1 00:00:05,640 --> 00:00:09,880 WELCOME TO THE ECHO NIH RETURN 2 00:00:09,880 --> 00:00:11,120 TO INDIVIDUAL RESEARCH RESULTS 3 00:00:11,120 --> 00:00:12,080 TO PARTICIPANTS WORKSHOP. 4 00:00:12,080 --> 00:00:13,600 MY NAME IS MATT GILLMAN, 5 00:00:13,600 --> 00:00:15,040 DIRECTOR OF THE ECHO PROGRAM. 6 00:00:15,040 --> 00:00:16,680 MY JOB IN THE NEXT 10 MINUTES OR 7 00:00:16,680 --> 00:00:19,400 SO IS TO SET THE STAGE FOR THESE 8 00:00:19,400 --> 00:00:23,040 TWO DAYS ALONG WITH CLAY MASH, 9 00:00:23,040 --> 00:00:33,280 OUR WONDERFUL CO-CHAIR. 10 00:00:33,280 --> 00:00:34,760 THIS WORKED BEFORE BUT IT'S NOT 11 00:00:34,760 --> 00:00:36,400 WORKING NOW. 12 00:00:36,400 --> 00:00:40,800 THERE WE GO. 13 00:00:40,800 --> 00:00:42,080 SO FIRST I'D LIKE TO GIVE A WARM 14 00:00:42,080 --> 00:00:44,280 WELCOME TO THOSE IN THE ROOM. 15 00:00:44,280 --> 00:00:46,240 SO WE'RE REALLY PLEASED AND 16 00:00:46,240 --> 00:00:48,200 HONORED TODAY TO HAVE FOUR ECHO 17 00:00:48,200 --> 00:00:49,400 PARTICIPANTS. 18 00:00:49,400 --> 00:00:50,240 WHO ARE SITTING NEAR THE FRONT 19 00:00:50,240 --> 00:00:52,000 OF THE TABLE ON BOTH SIDES. 20 00:00:52,000 --> 00:00:53,480 AND WHEN WE GO AROUND THE ROOM 21 00:00:53,480 --> 00:00:55,200 AND INTRODUCE, YOU'LL GET TO 22 00:00:55,200 --> 00:00:56,560 HEAR THEIR VOICES. 23 00:00:56,560 --> 00:00:58,280 AND IT'S REALLY A PRIVILEGE TO 24 00:00:58,280 --> 00:00:59,480 HAVE YOU HERE TODAY. 25 00:00:59,480 --> 00:01:02,360 WE ENCOURAGE YOU TO PARTICIPATE 26 00:01:02,360 --> 00:01:03,760 TO YOUR HEART'S CONTENT AS MUCH 27 00:01:03,760 --> 00:01:07,120 AS YOU FEEL COMFORTABLE. 28 00:01:07,120 --> 00:01:08,920 YOU'LL BE HEARING SCIENTISTS WHO 29 00:01:08,920 --> 00:01:11,960 SORT OF TALK TO THEMSELVES A 30 00:01:11,960 --> 00:01:13,120 LOT, SO WHEN YOU HEAR THINGS 31 00:01:13,120 --> 00:01:14,320 THAT DON'T MAKE SENSE, PLEASE 32 00:01:14,320 --> 00:01:17,120 LET US KNOW AND WE'RE LOOKING 33 00:01:17,120 --> 00:01:18,120 FORWARD TO YOUR CONTRIBUTIONS 34 00:01:18,120 --> 00:01:19,280 AND QUESTIONS. 35 00:01:19,280 --> 00:01:20,960 I'D ALSO LIKE TO THANK OUR 36 00:01:20,960 --> 00:01:23,320 SPEAKERS, OUR INVITED SPEAKERS, 37 00:01:23,320 --> 00:01:24,720 OF WHOM YOU'LL HEAR FROM OVER 38 00:01:24,720 --> 00:01:26,840 THE NEXT TWO DAYS, AND OUR 39 00:01:26,840 --> 00:01:29,920 DISCUSSANTS, WHO WILL, AT THE 40 00:01:29,920 --> 00:01:31,520 END OF THE TALKS AND MOST OF THE 41 00:01:31,520 --> 00:01:32,480 SESSIONS KICK OFF OUR DISCUSSION 42 00:01:32,480 --> 00:01:35,160 PERIOD. 43 00:01:35,160 --> 00:01:36,800 AND OF COURSE WE ALSO WELCOME 44 00:01:36,800 --> 00:01:39,720 THOSE ON ZOOM IN VIRTUAL LAND. 45 00:01:39,720 --> 00:01:41,400 THANK YOU VERY MUCH FOR JOINING 46 00:01:41,400 --> 00:01:42,840 US TODAY. 47 00:01:42,840 --> 00:01:43,760 AND DURING THE DISCUSSION 48 00:01:43,760 --> 00:01:45,520 PERIOD, YOU'LL BE ABLE TO 49 00:01:45,520 --> 00:01:47,520 ADDRESS QUESTIONS THROUGH THE Q 50 00:01:47,520 --> 00:01:48,960 & A FUNCTION ON ZOOM WHICH CLAY 51 00:01:48,960 --> 00:01:56,600 WILL TELL YOU A LITTLE BIT MORE 52 00:01:56,600 --> 00:01:57,320 ABOUT. 53 00:01:57,320 --> 00:01:58,760 SHOULD I SAY NEXT SLIDE? 54 00:01:58,760 --> 00:02:00,320 OKAY, THANK YOU. 55 00:02:00,320 --> 00:02:03,640 SO A SPECIAL THANKS TO OUR 56 00:02:03,640 --> 00:02:04,520 WORKSHOP PLANNING COMMITTEE. 57 00:02:04,520 --> 00:02:09,040 CLAY IS OUR WONDERFUL LEADER AND 58 00:02:09,040 --> 00:02:11,840 THIS SLIDE SHOWS THAT WE'VE HAD 59 00:02:11,840 --> 00:02:12,880 PLANNING COMMITTEE THAT CONSISTS 60 00:02:12,880 --> 00:02:14,120 OF PEOPLE FROM ECHO AS WELL AS 61 00:02:14,120 --> 00:02:18,720 OTHER PARTS OF NIH. 62 00:02:18,720 --> 00:02:20,280 MANY OF WHOM YOU'LL SEE AS 63 00:02:20,280 --> 00:02:23,760 SESSION MODERATORS OR ZOOM 64 00:02:23,760 --> 00:02:24,240 MONITORS. 65 00:02:24,240 --> 00:02:25,880 THE SESSION MODERATORS ARE IN 66 00:02:25,880 --> 00:02:27,160 YELLOW, THEY'RE SITTING AT THE 67 00:02:27,160 --> 00:02:28,600 TABLE TODAY, YOU'LL HEAR THEM 68 00:02:28,600 --> 00:02:29,880 INTRODUCE THEMSELVES AND WE'LL 69 00:02:29,880 --> 00:02:31,880 HAVE ZOOM MONITORS. 70 00:02:31,880 --> 00:02:33,040 UNFORTUNATELY ASHLEY VARGAS IS 71 00:02:33,040 --> 00:02:35,040 SICK TODAY SO CLAY WILL STEP IN 72 00:02:35,040 --> 00:02:41,680 FOR ASHLEY. 73 00:02:41,680 --> 00:02:42,720 SO WHY ARE WE HERE? 74 00:02:42,720 --> 00:02:43,920 I'M JUST GOING TO GIVE A FEW 75 00:02:43,920 --> 00:02:46,200 SLIDES OF BACKGROUND JUST TO 76 00:02:46,200 --> 00:02:47,200 WHET YOUR APPETITE BECAUSE 77 00:02:47,200 --> 00:02:48,280 YOU'LL BE HEARING A LOT MORE 78 00:02:48,280 --> 00:02:50,800 FROM OUR SPEAKERS. 79 00:02:50,800 --> 00:02:52,040 BUT TO SET THE STAGE A LITTLE 80 00:02:52,040 --> 00:02:55,840 BIT, RESEARCHERS HAVE 81 00:02:55,840 --> 00:02:56,520 HISTORICALLY -- TYPICALLY 82 00:02:56,520 --> 00:02:59,480 LIMITED TO THEM TO WHAT 83 00:02:59,480 --> 00:03:00,960 RESEARCHERS HAVE DEEMED 84 00:03:00,960 --> 00:03:07,200 CLINICALLY ACTIONABLE RESULTS. 85 00:03:07,200 --> 00:03:09,160 SO IN THIS DAY AND AGE, WE'RE 86 00:03:09,160 --> 00:03:11,880 ASKING WHY ONLY CLINICAL IF WE 87 00:03:11,880 --> 00:03:14,800 HAVE STUDIES LIKE ECHO WHICH ARE 88 00:03:14,800 --> 00:03:16,800 BASED ON GENERAL POPULATIONS OR 89 00:03:16,800 --> 00:03:18,360 PUBLIC HEALTH, SHOULD WE BE 90 00:03:18,360 --> 00:03:19,680 RETURNING RESULTS DIRECTLY TO 91 00:03:19,680 --> 00:03:21,880 PARTICIPANTS WITH SOME OTHER 92 00:03:21,880 --> 00:03:24,480 KIND OF SUPPORT OF CLINICAL? 93 00:03:24,480 --> 00:03:26,040 AND ALSO WHO GETS TO DECIDE WHAT 94 00:03:26,040 --> 00:03:27,200 IS ACTIONABLE? 95 00:03:27,200 --> 00:03:28,200 ACTIONABLE FOR ONE PERSON MIGHT 96 00:03:28,200 --> 00:03:31,160 BE NOT FOR ANOTHER PERSON. 97 00:03:31,160 --> 00:03:32,800 RESEARCH MIGHT BE DIFFERENT FROM 98 00:03:32,800 --> 00:03:33,880 A PARTICIPANT. 99 00:03:33,880 --> 00:03:36,400 AND ACTUALLY DOES IT MATTER IF 100 00:03:36,400 --> 00:03:38,040 WE TERM IT ACTIONABLE FROM THE 101 00:03:38,040 --> 00:03:39,480 CLINICIAN OR RESEARCHER POINT OF 102 00:03:39,480 --> 00:03:40,120 VIEW? 103 00:03:40,120 --> 00:03:42,440 MAYBE SOME OTHER ACTION LIKE 104 00:03:42,440 --> 00:03:46,680 JUST INFORMATION IS IMPORTANT. 105 00:03:46,680 --> 00:03:47,920 SO WITH THESE QUESTIONS IN MIND, 106 00:03:47,920 --> 00:03:49,560 THERE HAVE BEEN RECENT CHANGES 107 00:03:49,560 --> 00:03:51,200 IN ATTITUDES AND APPROACHES. 108 00:03:51,200 --> 00:03:52,600 YES, THERE'S BEEN MORE 109 00:03:52,600 --> 00:03:54,120 PARTICIPANT ENGAGEMENT WITH 110 00:03:54,120 --> 00:03:55,360 RESEARCH, AND ONE OF THE REASONS 111 00:03:55,360 --> 00:03:57,080 THAT WE'RE HAVING THIS WORKSHOP 112 00:03:57,080 --> 00:04:00,800 IS THAT WE SEE THAT REPORT BACK, 113 00:04:00,800 --> 00:04:02,080 RETURN OF INDIVIDUAL RESULTS, IS 114 00:04:02,080 --> 00:04:06,720 ONE ELEMENT OF ENGAGEMENT WITH 115 00:04:06,720 --> 00:04:07,360 PARTICIPANTS IN RESEARCH. 116 00:04:07,360 --> 00:04:09,000 I WOULD SAY WE'RE MOVING TOWARDS 117 00:04:09,000 --> 00:04:10,840 MORE TRANSPARENCY AND WHAT WE DO 118 00:04:10,840 --> 00:04:11,520 IN THE RESEARCH ENTERPRISE. 119 00:04:11,520 --> 00:04:13,600 THERE'S MORE EVIDENCE FOR BEST 120 00:04:13,600 --> 00:04:14,920 PRACTICES IN WHAT AND WHEN AND 121 00:04:14,920 --> 00:04:16,240 HOW TO RETURN RESULTS, AND, 122 00:04:16,240 --> 00:04:17,640 THEREFORE, WE'VE SEEN A MOVE 123 00:04:17,640 --> 00:04:19,280 TOWARDS MORE RETURN OF 124 00:04:19,280 --> 00:04:20,840 INDIVIDUAL RESULTS, AND I THINK 125 00:04:20,840 --> 00:04:23,880 A TURNING POINT IN THIS 126 00:04:23,880 --> 00:04:25,400 DISCUSSION WAS THE NATIONAL 127 00:04:25,400 --> 00:04:26,440 ACADEMIES REPORT, A LANDMARK 128 00:04:26,440 --> 00:04:27,720 REPORT THAT CAME OUT IN 2018, 129 00:04:27,720 --> 00:04:30,120 AND WE HAVE SOME PEOPLE HERE WHO 130 00:04:30,120 --> 00:04:33,200 HAVE BEEN ON THAT PANEL, AND 131 00:04:33,200 --> 00:04:34,760 IT'S REALLY SORT OF SET THE 132 00:04:34,760 --> 00:04:35,600 STAGE WITH SOME NEW PRINCIPLES 133 00:04:35,600 --> 00:04:40,360 AND ETHICAL APPROACHES. 134 00:04:40,360 --> 00:04:41,960 AT THE SAME TIME, THERE REMAIN 135 00:04:41,960 --> 00:04:44,120 CONCERNS ABOUT REPORT-BACK. 136 00:04:44,120 --> 00:04:45,800 WHAT IS RESEARCH? 137 00:04:45,800 --> 00:04:48,400 RESEARCH AIM IS TO INFORM. 138 00:04:48,400 --> 00:04:49,840 IT'S ABOUT GENERALIZED 139 00:04:49,840 --> 00:04:51,720 KNOWLEDGE. 140 00:04:51,720 --> 00:04:53,840 NOT PRIMARILY ABOUT INDIVIDUAL 141 00:04:53,840 --> 00:04:54,400 BENEFITS. 142 00:04:54,400 --> 00:04:56,040 AND WHEN WE TALK ABOUT 143 00:04:56,040 --> 00:04:56,600 INDIVIDUAL BENEFIT, IT'S 144 00:04:56,600 --> 00:04:58,000 DIFFERENT FROM THE MAIN AIM OF 145 00:04:58,000 --> 00:04:59,000 DOING RESEARCH. 146 00:04:59,000 --> 00:05:00,560 SO KEEP THAT IN MIND. 147 00:05:00,560 --> 00:05:02,280 THERE'S BEEN A CONCERN ABOUT 148 00:05:02,280 --> 00:05:05,440 POTENTIAL HARMS WITH 149 00:05:05,440 --> 00:05:06,440 PARTICIPANTS PERHAPS 150 00:05:06,440 --> 00:05:07,400 MISINTERPRETING RESULTS, AND I 151 00:05:07,400 --> 00:05:08,600 THINK WE'LL HEAR ABOUT HOW BIG A 152 00:05:08,600 --> 00:05:10,240 PROBLEM THAT IS OR HOW SMALL A 153 00:05:10,240 --> 00:05:11,240 PROBLEM IT IS. 154 00:05:11,240 --> 00:05:14,520 SOMETIMES THERE'S A CONFUSION 155 00:05:14,520 --> 00:05:15,760 BETWEEN RESEARCH RESULTS AND 156 00:05:15,760 --> 00:05:17,600 CLINICAL RESULTS. 157 00:05:17,600 --> 00:05:20,160 SO RESEARCHERS GET DATA WHICH 158 00:05:20,160 --> 00:05:23,280 MAY NOT BE CLINICALLY 159 00:05:23,280 --> 00:05:23,840 ACTIONABLE. 160 00:05:23,840 --> 00:05:24,680 I REFERENCED THAT ON A PREVIOUS 161 00:05:24,680 --> 00:05:25,240 SLIDE. 162 00:05:25,240 --> 00:05:27,640 AND THEN, OF COURSE, THERE'S THE 163 00:05:27,640 --> 00:05:29,520 HOW, WHICH, YOU KNOW, REQUIRES 164 00:05:29,520 --> 00:05:30,480 RESOURCES, IT REQUIRES STAFFING 165 00:05:30,480 --> 00:05:32,160 AND EXPERTISE AND TECHNOLOGY, 166 00:05:32,160 --> 00:05:38,720 AND HOW MUCH CAN WE DO FEASIBLY. 167 00:05:38,720 --> 00:05:39,920 AND THEN THERE'S STILL MANY 168 00:05:39,920 --> 00:05:40,200 GAPS. 169 00:05:40,200 --> 00:05:41,520 SO WHAT WE RECOGNIZE, AND ONE OF 170 00:05:41,520 --> 00:05:43,080 THE REASONS WE'RE HAVING THIS 171 00:05:43,080 --> 00:05:44,400 WORKSHOP IS THAT MOST RESEARCH 172 00:05:44,400 --> 00:05:48,200 AND PRACTICES TO DATE ARE ABOUT 173 00:05:48,200 --> 00:05:49,080 GENETICS, AND THAT'S -- YOU 174 00:05:49,080 --> 00:05:51,160 KNOW, THERE'S BEEN A LOT OF 175 00:05:51,160 --> 00:05:53,360 MOVEMENT, RESEARCH, AND NOW BEST 176 00:05:53,360 --> 00:05:56,440 PRACTICES IN RETURN OF GENETIC 177 00:05:56,440 --> 00:05:56,760 RESULTS. 178 00:05:56,760 --> 00:05:59,160 AND MOST OF IT HAS BEEN AMONG 179 00:05:59,160 --> 00:06:00,880 ADULT NON-PREGNANT PARTICIPANTS. 180 00:06:00,880 --> 00:06:02,240 BUT WHAT ABOUT PRINCIPLES AND 181 00:06:02,240 --> 00:06:04,200 BEST PRACTICES FOR NON-GENETIC, 182 00:06:04,200 --> 00:06:06,480 WHAT WE CALL ENVIRONMENTAL 183 00:06:06,480 --> 00:06:07,680 RESULTS, FOR PREGNANT 184 00:06:07,680 --> 00:06:09,760 PARTICIPANTS AND CHILDREN AND 185 00:06:09,760 --> 00:06:11,720 ADOLESCENTS, AND HOW DO WE SHARE 186 00:06:11,720 --> 00:06:13,120 EQUITY IN REPORT-BACK? 187 00:06:13,120 --> 00:06:15,040 SO THIS WORKSHOP AIMS TO FILL 188 00:06:15,040 --> 00:06:18,400 THESE GAPS. 189 00:06:18,400 --> 00:06:20,040 SO WHY IS ECHO INTERESTED IN 190 00:06:20,040 --> 00:06:22,120 THIS? 191 00:06:22,120 --> 00:06:23,600 WELL, WHAT'S ECHO? 192 00:06:23,600 --> 00:06:24,800 ENVIRONMENTAL INFLUENCES ON 193 00:06:24,800 --> 00:06:26,400 CHILD HEALTH OUTCOMES. 194 00:06:26,400 --> 00:06:27,680 ITS MISSION IS TO ENHANCE THE 195 00:06:27,680 --> 00:06:28,680 HEALTH OF CHILDREN FOR 196 00:06:28,680 --> 00:06:29,600 GENERATIONS TO COME. 197 00:06:29,600 --> 00:06:31,080 AND OUR GOAL IS TO UNDERSTAND 198 00:06:31,080 --> 00:06:33,160 THE EFFECTS OF A BROAD RANGE OF 199 00:06:33,160 --> 00:06:35,040 EARLY ENVIRONMENTAL EXPOSURES ON 200 00:06:35,040 --> 00:06:37,080 CHILD HEALTH AND DEVELOPMENT IN 201 00:06:37,080 --> 00:06:38,840 THE FIVE OUTCOME DOMAINS THAT 202 00:06:38,840 --> 00:06:42,280 YOU SEE AT THE BOTTOM, PRE, PERI 203 00:06:42,280 --> 00:06:44,880 AND POSTNATAL OUTCOMES, UPPER 204 00:06:44,880 --> 00:06:47,920 AIRWAY, OBESITY, AND MANY FACETS 205 00:06:47,920 --> 00:06:49,760 OF HEALTH AND WELL-BEING. 206 00:06:49,760 --> 00:06:50,920 AND WE DO THIS THROUGH 207 00:06:50,920 --> 00:06:51,960 OBSERVATION AND INTERVENTION 208 00:06:51,960 --> 00:06:53,400 RESEARCH. 209 00:06:53,400 --> 00:06:54,800 OBSERVATIONAL THROUGH OUR ECHO 210 00:06:54,800 --> 00:06:56,680 COHORTS AND INTERVENTION THROUGH 211 00:06:56,680 --> 00:06:58,240 THE IDEA STATES PEDIATRIC 212 00:06:58,240 --> 00:06:59,400 CLINICAL TRIALS NETWORK. 213 00:06:59,400 --> 00:07:02,600 OVERALL THESE ENCOMPASS 44 214 00:07:02,600 --> 00:07:07,840 STATES, D.C. AND PUERTO RICO. 215 00:07:07,840 --> 00:07:12,480 AND OUR OBSERVATIONAL RESEARCH, 216 00:07:12,480 --> 00:07:14,840 WE'RE WAITING TO GATHER DATA 217 00:07:14,840 --> 00:07:17,120 FROM 69 PRE-EXISTING AND ONGOING 218 00:07:17,120 --> 00:07:18,920 MATERNAL CHILD COHORT STUDIES. 219 00:07:18,920 --> 00:07:20,640 SO WE'VE AMASSED A DATA PLATFORM 220 00:07:20,640 --> 00:07:23,720 WHICH HAS LONGITUDINAL DATA FROM 221 00:07:23,720 --> 00:07:25,640 PRECONCEPTION TO AGE 21 YEARS. 222 00:07:25,640 --> 00:07:26,880 IT REPRESENTS A DIVERSE 223 00:07:26,880 --> 00:07:28,080 POPULATION OF OVER 50,000 224 00:07:28,080 --> 00:07:29,040 CHILDREN PLUS THEIR FAMILY 225 00:07:29,040 --> 00:07:30,080 MEMBERS. 226 00:07:30,080 --> 00:07:32,800 AND THIS IS A MULTIDISCIPLINARY 227 00:07:32,800 --> 00:07:34,880 CONSORTIUM WHICH INVOLVES OVER A 228 00:07:34,880 --> 00:07:36,440 THOUSAND INVESTIGATORS, WHICH 229 00:07:36,440 --> 00:07:39,640 HAS BEEN QUITE PRODUCTIVE SINCE 230 00:07:39,640 --> 00:07:41,880 2016, WITH 1,000 -- MORE THAN A 231 00:07:41,880 --> 00:07:43,400 THOUSAND PAPERS PUBLISHED. 232 00:07:43,400 --> 00:07:45,120 MOST OF THOSE WERE IN THE 233 00:07:45,120 --> 00:07:46,200 INDIVIDUAL COHORTS THAT CAME IN 234 00:07:46,200 --> 00:07:48,960 TO THE CONSORTIUM, BUT, OF 235 00:07:48,960 --> 00:07:54,760 COURSE, THE RESON DETRA -- THE 236 00:07:54,760 --> 00:07:56,360 PAPERS ARE INCREASING, THERE ARE 237 00:07:56,360 --> 00:07:58,560 MORE THAN 100 OF THEM, WE CALL 238 00:07:58,560 --> 00:08:00,520 THEM ECHO-WIDE COHORT PAPERS. 239 00:08:00,520 --> 00:08:02,040 THE GOALS OF THE NETWORK ARE 240 00:08:02,040 --> 00:08:03,440 TO PROVIDE ACCESS TO STATE OF 241 00:08:03,440 --> 00:08:05,800 THE ART MULTICENTER CLINICAL 242 00:08:05,800 --> 00:08:07,480 TRIALS AMONG CHILDREN FROM RURAL 243 00:08:07,480 --> 00:08:09,400 OR UNDERSERVED COMMUNITIES IN 244 00:08:09,400 --> 00:08:11,600 STATES WITH HISTORICALLY LOW 245 00:08:11,600 --> 00:08:13,680 RATES OF NIH FUNDING, AND TO 246 00:08:13,680 --> 00:08:14,520 BUILD NATIONAL PEDIATRIC 247 00:08:14,520 --> 00:08:17,320 RESEARCH CAPACITY TO CO CONDUCT 248 00:08:17,320 --> 00:08:17,720 SUCH TRIALS. 249 00:08:17,720 --> 00:08:19,680 TO DATE, THE NETWORK HAS SEEN 250 00:08:19,680 --> 00:08:22,000 OVER A DOZEN COMPLETED TRIALS OR 251 00:08:22,000 --> 00:08:23,800 IN THE FIELD OR IN DEVELOPMENT 252 00:08:23,800 --> 00:08:34,120 CLOSE TO BEING FIELDED. 253 00:08:34,120 --> 00:08:34,600 OKAY. 254 00:08:34,600 --> 00:08:36,320 AND WITHIN ECHO, OUR 255 00:08:36,320 --> 00:08:38,360 INVESTIGATORS HAVE CREATED A 256 00:08:38,360 --> 00:08:40,560 POLICY FOR RETURN OF INDIVIDUAL 257 00:08:40,560 --> 00:08:41,040 RESULTS. 258 00:08:41,040 --> 00:08:42,640 THE CURRENT POLICY WAS RATIFIED 259 00:08:42,640 --> 00:08:44,840 ABOUT THREE YEARS AGO. 260 00:08:44,840 --> 00:08:46,600 AND IT RECOGNIZED THE FEDERATED 261 00:08:46,600 --> 00:08:47,760 NATURE OF THE ECHO COHORT. 262 00:08:47,760 --> 00:08:49,640 SO WE HAD THESE 69 COHORTS COME 263 00:08:49,640 --> 00:08:50,320 TOGETHER. 264 00:08:50,320 --> 00:08:51,600 THEY HAD DIFFERENT CULTURES, 265 00:08:51,600 --> 00:08:54,360 DIFFERENT TRADITIONS, DIFFERENT 266 00:08:54,360 --> 00:08:56,880 DISCIPLINES, AND SO THIS POLICY 267 00:08:56,880 --> 00:08:58,400 RECOGNIZED THAT, AND SO IT WAS 268 00:08:58,400 --> 00:08:59,800 TYPICALLY ON THE CONSERVATIVE 269 00:08:59,800 --> 00:09:00,520 SIDE. 270 00:09:00,520 --> 00:09:02,560 SO RETURNING -- SUGGESTING 271 00:09:02,560 --> 00:09:03,600 RETURNING FEWER THAN MORE 272 00:09:03,600 --> 00:09:04,520 RESULTS. 273 00:09:04,520 --> 00:09:06,200 BUT AS WE GO INTO THE SECOND 274 00:09:06,200 --> 00:09:09,440 CYCLE OF THE ECHO COHORT, WHICH 275 00:09:09,440 --> 00:09:11,200 WILL BEGIN LATER THIS YEAR, I 276 00:09:11,200 --> 00:09:13,600 THINK WE HAVE AN OPPORTUNITY FOR 277 00:09:13,600 --> 00:09:14,680 REFINEMENT AND ENHANCEMENT. 278 00:09:14,680 --> 00:09:16,560 SO WE'RE MOVING MORE TOWARDS A 279 00:09:16,560 --> 00:09:19,080 SINGLE COHORT WITH STUDY SITES, 280 00:09:19,080 --> 00:09:21,480 RATHER THAN THE MULTIPLE COHORTS 281 00:09:21,480 --> 00:09:23,120 VIEW OF CYCLE 1, WHICH MEANS 282 00:09:23,120 --> 00:09:27,360 THERE WILL BE MORE SENTIZATION 283 00:09:27,360 --> 00:09:28,920 CENTRALIZATION AND 284 00:09:28,920 --> 00:09:30,000 STANDARDIZATION SO WE WANT TO 285 00:09:30,000 --> 00:09:31,080 MOVE TOWARDS BEST PRACTICES IN 286 00:09:31,080 --> 00:09:33,360 THIS NEW ERA OF ECHO BASED ON 287 00:09:33,360 --> 00:09:35,240 UPDATED PRINCIPLES. 288 00:09:35,240 --> 00:09:36,440 SO THE WORKSHOP PURPOSE, 289 00:09:36,440 --> 00:09:38,000 THEREFORE, IS TO IDENTIFY BEST 290 00:09:38,000 --> 00:09:39,320 PRACTICES FOR LARGE SAMPLE 291 00:09:39,320 --> 00:09:40,520 STUDIES OF PREGNANCY AND 292 00:09:40,520 --> 00:09:42,200 CHILDHOOD TO ETHICALLY AND 293 00:09:42,200 --> 00:09:43,280 FEASIBLY RETURN INDIVIDUAL 294 00:09:43,280 --> 00:09:44,840 RESULTS TO PARTICIPANTS. 295 00:09:44,840 --> 00:09:46,080 AND YOU'LL HEAR THIS PURPOSE 296 00:09:46,080 --> 00:09:48,360 FROM CLAY AS WELL IN JUST A FEW 297 00:09:48,360 --> 00:09:49,040 MINUTES. 298 00:09:49,040 --> 00:09:50,560 BUT IN ADDITION TO IDENTIFYING 299 00:09:50,560 --> 00:09:53,880 BEST PRACTICES, ON THE SORT OF 300 00:09:53,880 --> 00:09:55,280 SURROUND SIDE, WE WANT TO 301 00:09:55,280 --> 00:09:56,640 SPECIFY THE PRINCIPLES THAT LEAD 302 00:09:56,640 --> 00:09:59,520 TO THE BEST PRACTICES, AND TO 303 00:09:59,520 --> 00:10:02,920 IDENTIFY RESEARCH GAPS IN 304 00:10:02,920 --> 00:10:03,920 IMPLEMENTING BEST PRACTICES. 305 00:10:03,920 --> 00:10:05,360 SO WHEN WE IMPLEMENT THEM, HOW 306 00:10:05,360 --> 00:10:06,920 DO WE STUDY THEM, AND WHAT KIND 307 00:10:06,920 --> 00:10:09,800 OF EVIDENCE DO WE NEED BEFORE WE 308 00:10:09,800 --> 00:10:10,920 IMPLEMENT BEST PRACTICES? 309 00:10:10,920 --> 00:10:13,200 BECAUSE WE WISH TO INFORM THE 310 00:10:13,200 --> 00:10:15,640 ECHO PROGRAM ON BOTH SIDES, THE 311 00:10:15,640 --> 00:10:17,600 OBSERVATIONAL AND INTERVENTION 312 00:10:17,600 --> 00:10:19,240 SIDE, AS WELL AS OTHER LARGE 313 00:10:19,240 --> 00:10:20,320 LONGITUDINAL STUDIES OF 314 00:10:20,320 --> 00:10:23,720 PREGNANCY AND CHILDHOOD. 315 00:10:23,720 --> 00:10:26,120 SO LET ME STOP THERE AND BEFORE 316 00:10:26,120 --> 00:10:28,840 I INTRODUCE CLAY, I THOUGHT IT 317 00:10:28,840 --> 00:10:30,160 WOULD BE JUST A GOOD IDEA TO GO 318 00:10:30,160 --> 00:10:31,600 AROUND THE ROOM AND INTRODUCE 319 00:10:31,600 --> 00:10:35,000 OURSELVES AT THE TABLE. 320 00:10:35,000 --> 00:10:36,720 WE DIDN'T ACTUALLY RESERVE TIME 321 00:10:36,720 --> 00:10:38,160 FOR THIS SO I'M SORRY WE'RE 322 00:10:38,160 --> 00:10:41,320 GOING TO GO OVER FIVE MINUTES. 323 00:10:41,320 --> 00:10:42,760 ALREADY APOLOGIZING FOR TIME. 324 00:10:42,760 --> 00:10:43,800 BUT I THINK IT WOULD BE GREAT 325 00:10:43,800 --> 00:10:45,520 FOR EVERYONE TO KNOW WHO'S AT 326 00:10:45,520 --> 00:10:47,880 THE TABLE. 327 00:10:47,880 --> 00:10:49,520 SO I THINK WE'RE GOING TO START 328 00:10:49,520 --> 00:10:52,440 WITH YOU AND THEN GO AROUND THIS 329 00:10:52,440 --> 00:10:54,000 WAY AND END WITH OUR ECHO 330 00:10:54,000 --> 00:10:54,880 PARTICIPANTS. 331 00:10:54,880 --> 00:10:57,160 SO IF YOU COULD JUST SAY WHO YOU 332 00:10:57,160 --> 00:11:00,320 ARE AND WHERE YOU'RE FROM AND 333 00:11:00,320 --> 00:11:01,240 JUST ONE PHRASE ABOUT YOUR 334 00:11:01,240 --> 00:11:02,320 INTEREST IN THIS WORKSHOP, THAT 335 00:11:02,320 --> 00:11:05,160 WOULD BE GREAT. 336 00:11:05,160 --> 00:11:08,920 JYOTI, WHY DON'T YOU GO AHEAD. 337 00:11:08,920 --> 00:11:10,920 >>GOOD MORNING, MY NAME IS 338 00:11:10,920 --> 00:11:12,200 JYOTI ANGAL. 339 00:11:12,200 --> 00:11:13,920 I REPRESENT THE SOUTH DAKOTA 340 00:11:13,920 --> 00:11:17,120 COHORT IN ECHO. 341 00:11:17,120 --> 00:11:19,600 AND ONE INTEREST IN THIS 342 00:11:19,600 --> 00:11:21,160 WORKSHOP IS TO BE ABLE TO SHARE 343 00:11:21,160 --> 00:11:23,560 THE PLATFORM WITH THE ECHO 344 00:11:23,560 --> 00:11:24,760 PARTICIPANTS AND HOW OFTEN DO WE 345 00:11:24,760 --> 00:11:27,040 GET TO DO THAT, WHEN WE ARE 346 00:11:27,040 --> 00:11:28,280 TALKING OR IN THE SAME ROOM WITH 347 00:11:28,280 --> 00:11:28,840 PARTICIPANTS. 348 00:11:28,840 --> 00:11:30,880 >>THANK YOU, JYOTI. 349 00:11:30,880 --> 00:11:32,760 AND YOU'VE ALREADY DEMONSTRATED 350 00:11:32,760 --> 00:11:33,880 EXCELLENT USE OF THE MICROPHONE. 351 00:11:33,880 --> 00:11:36,800 BY TURNING IT ON WHEN YOU'RE 352 00:11:36,800 --> 00:11:37,880 SPEAKING AND ADRIANA, WHEN 353 00:11:37,880 --> 00:11:38,960 YOU'RE DONE, PLEASE TURN IT OFF. 354 00:11:38,960 --> 00:11:39,720 >>HELLO. 355 00:11:39,720 --> 00:11:43,400 MY NAME IS ADRIANA FROM THE 356 00:11:43,400 --> 00:11:44,800 UNIVERSITY OF SAN DIEGO, AND FOR 357 00:11:44,800 --> 00:11:46,840 THE LAST 10 YEARS OR SO, WE'VE 358 00:11:46,840 --> 00:11:49,040 BEEN DEVELOPING INFO GRAPHICS TO 359 00:11:49,040 --> 00:11:52,000 RETURN RESEARCH DATA AS WELL AS 360 00:11:52,000 --> 00:11:53,000 OTHER CLINICAL DATA SO YOU'LL 361 00:11:53,000 --> 00:11:54,280 GET TO SEE THOSE A LITTLE LATER 362 00:11:54,280 --> 00:11:58,680 TODAY. 363 00:11:58,680 --> 00:12:03,640 >>HI, I'M BEN BERKMAN, FACULTY 364 00:12:03,640 --> 00:12:05,600 MEMBER IN THE DEPARTMENT OF 365 00:12:05,600 --> 00:12:06,880 BIOETHICS, THE GENOME INSTITUTE, 366 00:12:06,880 --> 00:12:09,520 AND A LOT OF MY RESEARCH HAS 367 00:12:09,520 --> 00:12:10,840 BEEN ABOUT RETURN OF RESULTS 368 00:12:10,840 --> 00:12:13,680 OVER THE PAST DECADE AND A HALF, 369 00:12:13,680 --> 00:12:15,600 AND SO I'M REALLY INTERESTED TO 370 00:12:15,600 --> 00:12:18,560 HEAR THE DELIBERATION AND HOW WE 371 00:12:18,560 --> 00:12:21,120 CAN IMPLEMENT SOME OF THESE 372 00:12:21,120 --> 00:12:26,960 DEBATES AND IDEAS IN THE ECHO 373 00:12:26,960 --> 00:12:27,200 PROGRAM. 374 00:12:27,200 --> 00:12:29,920 >>GOOD MORNING, INGRID HOLM, 375 00:12:29,920 --> 00:12:31,640 PEDIATRIC GENETICIST AT BOSTON 376 00:12:31,640 --> 00:12:32,400 CHILDREN'S HOSPITAL, PROFESSOR 377 00:12:32,400 --> 00:12:34,040 OF PEDIATRICS AT HARVARD MEDICAL 378 00:12:34,040 --> 00:12:34,280 SCHOOL. 379 00:12:34,280 --> 00:12:39,120 I'VE BEEN DOING RESEARCH IN -- 380 00:12:39,120 --> 00:12:40,600 SOCIAL ISSUES IN GENOMICS FOR A 381 00:12:40,600 --> 00:12:41,480 NUMBER OF YEARS AND IN 382 00:12:41,480 --> 00:12:46,160 PARTICULAR, STUDIES ON MATERNAL 383 00:12:46,160 --> 00:12:46,920 RESULTS IN CHILDREN SO VERY 384 00:12:46,920 --> 00:12:48,720 HAPPY TO BE HERE. 385 00:12:48,720 --> 00:12:50,120 >>HI. 386 00:12:50,120 --> 00:12:52,040 I'M ADAM BERGER, DIRECTOR OF THE 387 00:12:52,040 --> 00:12:54,400 DIVISION OF CLINICAL RESEARCH 388 00:12:54,400 --> 00:12:56,160 AND HEALTH POLICY, PART OF THE 389 00:12:56,160 --> 00:12:56,920 OFFICE OF SCIENCE POLICY, PART 390 00:12:56,920 --> 00:12:58,000 OF THE DIRECTOR'S OFFICE. 391 00:12:58,000 --> 00:12:59,640 I'VE BEEN IN THE SPACE FOR 392 00:12:59,640 --> 00:13:01,240 RETURN OF RESEARCH RESULTS FOR A 393 00:13:01,240 --> 00:13:02,160 LONG TIME. 394 00:13:02,160 --> 00:13:03,680 I WAS ONE OF THE DRIVERS BEHIND 395 00:13:03,680 --> 00:13:04,840 THE NATIONAL ACADEMIES REPORT 396 00:13:04,840 --> 00:13:07,400 THAT MATT ACTUALLY MENTIONED IN 397 00:13:07,400 --> 00:13:08,280 HIS TALK, AND WE'RE THINKING 398 00:13:08,280 --> 00:13:11,360 ABOUT HOW WE CAN ACTUALLY 399 00:13:11,360 --> 00:13:12,680 FACILITATE A FRAMEWORK HERE AT 400 00:13:12,680 --> 00:13:14,640 NIH SO THAT WE CAN ENABLE 401 00:13:14,640 --> 00:13:17,760 GREATER RETURN. 402 00:13:17,760 --> 00:13:18,120 THANKS. 403 00:13:18,120 --> 00:13:21,040 >>I'M JULIA BRODY. 404 00:13:21,040 --> 00:13:23,440 WE STUDY ENVIRONMENTAL CHEMICALS 405 00:13:23,440 --> 00:13:27,360 IN BREAST CANCER IN A COMMUNITY 406 00:13:27,360 --> 00:13:28,200 ENGAGED CONTEXT. 407 00:13:28,200 --> 00:13:30,360 THAT LED US TO BEGIN REPORTING 408 00:13:30,360 --> 00:13:33,320 RESULTS FOR ENDOCRINE DISRUPTING 409 00:13:33,320 --> 00:13:34,440 COMPOUNDS ABOUT 25 YEARS AGO, 410 00:13:34,440 --> 00:13:36,160 AND TO KEEP WORKING ON IMPROVING 411 00:13:36,160 --> 00:13:38,600 OUR METHODS AND UNDERSTANDING 412 00:13:38,600 --> 00:13:42,680 PARTICIPANTS' EXPERIENCES. 413 00:13:42,680 --> 00:13:47,080 >>HI, I'M RACHEL FROM U.C. 414 00:13:47,080 --> 00:13:49,400 SCHOOL OF PUBLIC HEALTH, DO A 415 00:13:49,400 --> 00:13:52,160 LOT OF RESEARCH, COMMUNITY-BASED 416 00:13:52,160 --> 00:13:53,240 PARTICIPATORY RESEARCH IN MY 417 00:13:53,240 --> 00:13:56,040 WORK IN COLLABORATION WITH FOLKS 418 00:13:56,040 --> 00:13:57,480 AT SILENT SPRING INCLUDING JULIE 419 00:13:57,480 --> 00:13:59,280 HAVE DONE A LOT OF RESULTS 420 00:13:59,280 --> 00:14:01,920 RETURN AND REPORT-BACK FOR AMONG 421 00:14:01,920 --> 00:14:03,400 TIE VERSE COMMUNITIES AND ALSO 422 00:14:03,400 --> 00:14:05,680 HAD THE PLEASURE OF WORKING WITH 423 00:14:05,680 --> 00:14:08,760 JYOTI ON THE RESULTS RETURN TASK 424 00:14:08,760 --> 00:14:09,520 FORCE FOR ECHO. 425 00:14:09,520 --> 00:14:11,040 AND I REPRESENT THE CHEMICALS IN 426 00:14:11,040 --> 00:14:16,880 OUR BODIES COHORT OF ECHO. 427 00:14:16,880 --> 00:14:19,920 >>MY NAME IS CARMEN VAN DER 428 00:14:19,920 --> 00:14:29,120 SLOCARMEN VELEZ-VEGA,UNIVERSITY. 429 00:14:29,120 --> 00:14:30,120 I'M HERE BECAUSE WE'VE BEEN 430 00:14:30,120 --> 00:14:31,840 DOING REPORT-BACK FOR SEVERAL 431 00:14:31,840 --> 00:14:33,920 YEARS IN PARTNERSHIP WITH SILENT 432 00:14:33,920 --> 00:14:38,000 SPRING, AND RETURNING RESULTS OF 433 00:14:38,000 --> 00:14:39,600 ENVIRONMENTAL INFORMATION, AND 434 00:14:39,600 --> 00:14:41,440 IT HAS BEEN A WONDERFUL 435 00:14:41,440 --> 00:14:42,640 EXPERIENCE AND HOPEFULLY THIS IS 436 00:14:42,640 --> 00:14:43,640 SOMETHING THAT'S GOING TO CATCH 437 00:14:43,640 --> 00:14:46,400 ON TO ALL THAT'S DOING STUDIES 438 00:14:46,400 --> 00:14:49,000 IN THIS AREA. 439 00:14:49,000 --> 00:14:50,080 CONTRIBUTING TO WHAT I THINK IS 440 00:14:50,080 --> 00:14:52,960 A SOCIAL JUSTICE ISSUE. 441 00:14:52,960 --> 00:14:57,320 >>HI, MY NAME IS MONICA 442 00:14:57,320 --> 00:14:59,240 RAMIREZ, ASSOCIATE PROFESSOR OF 443 00:14:59,240 --> 00:15:00,520 PUBLIC HEALTH AT THE UNIVERSITY 444 00:15:00,520 --> 00:15:01,480 OF ARIZONA. 445 00:15:01,480 --> 00:15:02,800 I'M REPRESENTING TUCSON, ARIZONA 446 00:15:02,800 --> 00:15:04,960 RIGHT ALONG THE U.S./MEXICO 447 00:15:04,960 --> 00:15:06,280 BORDER REGION, AND SO I'VE BEEN 448 00:15:06,280 --> 00:15:07,800 DOING CO-CREATED COMMUNITY 449 00:15:07,800 --> 00:15:11,800 SCIENCE PROJECTS FOR ABOUT 10 450 00:15:11,800 --> 00:15:13,400 YEARS TO INCLUDE A LARGE 451 00:15:13,400 --> 00:15:14,000 REPORT-BACK COMPONENT AND I'VE 452 00:15:14,000 --> 00:15:16,360 BEEN WORKING WITH COMMUNITIES 453 00:15:16,360 --> 00:15:18,080 THAT ARE NEIGHBORING RESOURCE 454 00:15:18,080 --> 00:15:19,680 EXTRACTION AND E.J. COMMUNITIES 455 00:15:19,680 --> 00:15:21,080 IN URBAN AND RURAL SPACES. 456 00:15:21,080 --> 00:15:23,400 THANK YOU. 457 00:15:23,400 --> 00:15:26,080 >>GOOD MORNING, I'M KIM 458 00:15:26,080 --> 00:15:27,040 MCALLISTER, PROGRAM OFFICER AT 459 00:15:27,040 --> 00:15:28,040 THE NATIONAL INSTITUTE OF 460 00:15:28,040 --> 00:15:29,720 ENVIRONMENTAL HEALTH SCIENCES, 461 00:15:29,720 --> 00:15:32,960 AND I HAVE BEEN INVOLVED IN ECHO 462 00:15:32,960 --> 00:15:38,600 AND I MANAGE SOME ELSI GRANTS IN 463 00:15:38,600 --> 00:15:39,240 MY PORTFOLIO. 464 00:15:39,240 --> 00:15:41,200 >>GOOD MORNING. 465 00:15:41,200 --> 00:15:44,000 I'M JULIE HERBSTMAN FROM 466 00:15:44,000 --> 00:15:44,440 COLUMBIA UNIVERSITY. 467 00:15:44,440 --> 00:15:46,640 I AM AN ENVIRONMENTAL 468 00:15:46,640 --> 00:15:48,200 EPIDEMIOLOGIST AND ALSO AN ECHO 469 00:15:48,200 --> 00:15:49,040 COHORT P.I. 470 00:15:49,040 --> 00:15:50,680 WE'VE BEEN DOING SOME 471 00:15:50,680 --> 00:15:52,000 REPORT-BACK OF CHEMICAL 472 00:15:52,000 --> 00:15:53,960 ENVIRONMENTAL EXPOSURES THAT 473 00:15:53,960 --> 00:15:54,960 I'LL GET TO TALK ABOUT A LITTLE 474 00:15:54,960 --> 00:15:56,440 BIT LATER THIS MORNING AND HAVE 475 00:15:56,440 --> 00:15:59,120 ALSO WORKED ON THE POLICY THAT 476 00:15:59,120 --> 00:16:01,840 MATT MENTIONED A BIT EARLIER TO 477 00:16:01,840 --> 00:16:04,880 BRING THESE IDEAS TO THE ECHO 478 00:16:04,880 --> 00:16:06,640 CONSORTIUM. 479 00:16:06,640 --> 00:16:10,760 >>I'M JEFF BOTKIN, 480 00:16:10,760 --> 00:16:12,360 PEDIATRICIAN, PROFESSOR EMERITUS 481 00:16:12,360 --> 00:16:13,480 AT UNIVERSITY OF UTAH. 482 00:16:13,480 --> 00:16:14,800 MOST OF MY WORK OVER THE YEARS 483 00:16:14,800 --> 00:16:17,640 HAS BEEN ON ELSI ISSUES, AND I 484 00:16:17,640 --> 00:16:19,280 CHAIRED THE CONSENSUS STATEMENT 485 00:16:19,280 --> 00:16:22,120 FOR THE NATIONAL ACADEMIES ON 486 00:16:22,120 --> 00:16:24,440 RETURN OF RESULTS. 487 00:16:24,440 --> 00:16:28,960 >>GOOD MORNING, I'M GAYA 488 00:16:28,960 --> 00:16:30,120 DOWLING, ADOLESCENT BRAIN 489 00:16:30,120 --> 00:16:31,520 DEVELOPMENT STUDY HOUSED AT THE 490 00:16:31,520 --> 00:16:32,280 NATIONAL INSTITUTE ON DRUG 491 00:16:32,280 --> 00:16:32,640 ABUSE. 492 00:16:32,640 --> 00:16:33,880 WE ARE VERY MUCH INTERESTED IN 493 00:16:33,880 --> 00:16:36,040 BEST PRACTICES FOR HOW AND WHEN 494 00:16:36,040 --> 00:16:37,000 TO RETURN RESULTS TO 495 00:16:37,000 --> 00:16:39,800 PARTICIPANTS. 496 00:16:39,800 --> 00:16:42,920 >>I'M KYLE BROTHERS FROM NORTON 497 00:16:42,920 --> 00:16:44,120 CHILDREN'S RESEARCH INSTITUTE 498 00:16:44,120 --> 00:16:45,880 AND THE UNIVERSITY OF LOUISVILLE 499 00:16:45,880 --> 00:16:50,240 IN KENTUCKY. 500 00:16:50,240 --> 00:16:52,400 I'M A PEDIATRICIAN AND 501 00:16:52,400 --> 00:16:54,040 BIOETHICIST AND WORKED ON RETURN 502 00:16:54,040 --> 00:16:55,520 OF RESULTS IN THE GENETIC SPACE 503 00:16:55,520 --> 00:16:58,920 FOR A NUMBER OF YEARS. 504 00:16:58,920 --> 00:17:02,080 >>GOOD MORNING, MY NAME IS 505 00:17:02,080 --> 00:17:04,360 SUNDANIA WONNUM FROM THE 506 00:17:04,360 --> 00:17:05,280 NATIONAL INSTITUTE OF MINORITY 507 00:17:05,280 --> 00:17:07,160 HEALTH AND HEALTH DISPARITIES 508 00:17:07,160 --> 00:17:08,120 WHERE WE'RE CONCERNED ABOUT THE 509 00:17:08,120 --> 00:17:09,280 SOCIAL JUSTICE IMPACT OF 510 00:17:09,280 --> 00:17:10,600 RESEARCH WE DO PARTICULARLY 511 00:17:10,600 --> 00:17:11,920 AMONG VULNERABLE AND 512 00:17:11,920 --> 00:17:13,880 MARGINALIZED POPULATIONS. 513 00:17:13,880 --> 00:17:16,520 >>I'M JOHNNYE LEWIS, A 514 00:17:16,520 --> 00:17:17,600 TOXICOLOGIST AT THE UNIVERSITY 515 00:17:17,600 --> 00:17:22,080 OF NEW MEXICO, AND IN 1996, 516 00:17:22,080 --> 00:17:24,480 STARTED A COMMUNITY PARTNERED 517 00:17:24,480 --> 00:17:26,440 RESEARCH PROGRAM THERE, AND WHEN 518 00:17:26,440 --> 00:17:28,640 YOU WORK IN PARTNERSHIP, 519 00:17:28,640 --> 00:17:31,040 RETURNING RESULTS IS PRETTY 520 00:17:31,040 --> 00:17:34,080 CRITICAL, SO I'VE BEEN REALLY 521 00:17:34,080 --> 00:17:37,280 EXCITED ABOUT EXPANDING THAT 522 00:17:37,280 --> 00:17:41,280 NETWORK INSIDE OF ECHO. 523 00:17:41,280 --> 00:17:44,600 >>HI, EVERYONE. 524 00:17:44,600 --> 00:17:51,040 I AM FROM PUERTO RICO. 525 00:17:51,040 --> 00:17:53,280 I'M HERE BECAUSE I'M WORKING 526 00:17:53,280 --> 00:17:56,840 WITH REPORT-BACK AND I THINK 527 00:17:56,840 --> 00:18:02,440 IT'S AN ISSUE OF -- I THINK THE 528 00:18:02,440 --> 00:18:05,040 PARTICIPANTS NEED TO KNOW THE 529 00:18:05,040 --> 00:18:08,480 RESULTS IN THE RESEARCH. 530 00:18:08,480 --> 00:18:11,160 >>GOOD MORNING, ALL. 531 00:18:11,160 --> 00:18:13,600 I'M COMING FROM PUERTO RICO, 532 00:18:13,600 --> 00:18:19,160 ESPECIALLY FROM THE NORTH. 533 00:18:19,160 --> 00:18:23,520 I PARTICIPATE IN THE PROGRAM IN 534 00:18:23,520 --> 00:18:24,960 2016. 535 00:18:24,960 --> 00:18:29,000 I TRY TO -- HEALTHY AS MOST I 536 00:18:29,000 --> 00:18:30,640 CAN AND I REALLY CARE ABOUT THE 537 00:18:30,640 --> 00:18:35,280 ISSUES THAT AFFECT MY LIFE, MY 538 00:18:35,280 --> 00:18:36,440 ENVIRONMENT AND MY COMMUNITY, SO 539 00:18:36,440 --> 00:18:43,680 THAT'S WHY WE ARE HERE. 540 00:18:43,680 --> 00:18:46,080 >>HI, I'M JAYDEN BENJAMIN HERE 541 00:18:46,080 --> 00:18:49,480 ON BEHALF OF THE L GAIN COHORT 542 00:18:49,480 --> 00:18:49,840 STUDY. 543 00:18:49,840 --> 00:18:53,520 I'M INTERESTED IN LEARNING ABOUT 544 00:18:53,520 --> 00:18:55,160 HOW I CONTRIBUTED TO THE STUDY 545 00:18:55,160 --> 00:18:58,960 AND WHAT I CAN LEARN FROM THE 546 00:18:58,960 --> 00:18:59,960 THINGS I'VE GIVEN TO THE STUDY. 547 00:18:59,960 --> 00:19:04,680 THANK YOU. 548 00:19:04,680 --> 00:19:06,840 >>I'M CLAY MASH, PROGRAM 549 00:19:06,840 --> 00:19:08,280 OFFICER IN THE ECHO PROGRAM 550 00:19:08,280 --> 00:19:09,480 OFFICE, AND HAVE BEEN INTERESTED 551 00:19:09,480 --> 00:19:12,880 IN RETURN OF RESULTS FOR QUITE A 552 00:19:12,880 --> 00:19:14,280 WHILE NOW. 553 00:19:14,280 --> 00:19:15,480 HAPPILY INVOLVED IN HELPING TO 554 00:19:15,480 --> 00:19:16,880 COORDINATE THIS WORKSHOP. 555 00:19:16,880 --> 00:19:24,520 THANK YOU. 556 00:19:24,520 --> 00:19:25,760 >>GOOD MORNING. 557 00:19:25,760 --> 00:19:30,800 MY NAME IS PAMELA GUYE FROM 558 00:19:30,800 --> 00:19:33,400 ARIZONA, NAVAJO NATION. 559 00:19:33,400 --> 00:19:36,400 I AM A PART OF THE ECHO STUDY 560 00:19:36,400 --> 00:19:38,440 WITH MY 3-YEAR-OLD DAUGHTER. 561 00:19:38,440 --> 00:19:42,280 SO I'M A MOM IN ECHO, AND MY 562 00:19:42,280 --> 00:19:44,600 DAUGHTER PAISLEY IS THE 563 00:19:44,600 --> 00:19:45,880 PARTICIPANT, SO I'M GLAD TO BE 564 00:19:45,880 --> 00:19:46,560 HERE. 565 00:19:46,560 --> 00:19:48,200 I'M GLAD THAT WE COULD SHARE A 566 00:19:48,200 --> 00:19:52,880 LOT OF OUR INFORMATION THAT 567 00:19:52,880 --> 00:19:56,640 COMES FROM ACROSS THE COUNTRY. 568 00:19:56,640 --> 00:19:59,160 >>HI, I'M EMILY MONROE WITH THE 569 00:19:59,160 --> 00:20:00,000 NEW HAMPSHIRE BIRTH COHORT 570 00:20:00,000 --> 00:20:00,440 STUDY. 571 00:20:00,440 --> 00:20:02,080 I HAVE FOUR CHILDREN CURRENTLY 572 00:20:02,080 --> 00:20:03,520 ENROLLED AND A FIFTH ON THE WAY 573 00:20:03,520 --> 00:20:05,520 TO BEING ENROLLED. 574 00:20:05,520 --> 00:20:08,280 AND HAPPY TO SHARE EXPERIENCES 575 00:20:08,280 --> 00:20:09,440 IN REPORTING BACK. 576 00:20:09,440 --> 00:20:10,960 I AM AN ENGINEER AND I LOVE 577 00:20:10,960 --> 00:20:12,280 DATA, SO YOU WILL HEAR THAT IN 578 00:20:12,280 --> 00:20:14,920 MY RESPONSES. 579 00:20:14,920 --> 00:20:16,080 >>GOOD MORNING, EVERYONE. 580 00:20:16,080 --> 00:20:19,040 MY NAME IS JULIE SAPP, GENETIC 581 00:20:19,040 --> 00:20:20,680 COUNSELOR IN THE CENTER FOR 582 00:20:20,680 --> 00:20:22,440 PRECISION HEALTH RESEARCH IN 583 00:20:22,440 --> 00:20:23,720 NHGRI WHERE I STUDY THE 584 00:20:23,720 --> 00:20:25,400 IMPLEMENTATION OF GENOMIC 585 00:20:25,400 --> 00:20:26,480 MEDICINE AND ALSO HAVE A SPECIAL 586 00:20:26,480 --> 00:20:28,240 INTEREST IN HOW PEOPLE USE 587 00:20:28,240 --> 00:20:29,440 MEDICALLY ACTIONABLE RESULTS 588 00:20:29,440 --> 00:20:30,880 THAT ARE RETURNED BOTH IN THE 589 00:20:30,880 --> 00:20:32,080 CLINICAL AND RESEARCH CONTEXT. 590 00:20:32,080 --> 00:20:33,720 SO THANKS. 591 00:20:33,720 --> 00:20:35,040 >>THANKS, EVERYONE AROUND THE 592 00:20:35,040 --> 00:20:35,360 TABLE. 593 00:20:35,360 --> 00:20:36,560 WE ALSO HAVE SOME OBSERVERS IN 594 00:20:36,560 --> 00:20:40,360 THE BACK, THOSE OF YOU O ON THE 595 00:20:40,360 --> 00:20:41,440 ZOOM AUDIENCE MAY BE ABLE TO SEE 596 00:20:41,440 --> 00:20:42,680 THEM ON OCCASION. 597 00:20:42,680 --> 00:20:44,440 AT THIS POINT, I'D LIKE TO TURN 598 00:20:44,440 --> 00:20:46,200 THE PODIUM OVER TO CLAY. 599 00:20:46,200 --> 00:20:48,360 CLAY SORT OF UNDERSOLD HIMSELF 600 00:20:48,360 --> 00:20:49,560 WHEN HE SAID I'M JUST A 601 00:20:49,560 --> 00:20:51,320 CONTRIBUTOR TO THIS WORKSHOP. 602 00:20:51,320 --> 00:20:52,640 HE'S REALLY BEEN THE DRIVER 603 00:20:52,640 --> 00:20:55,160 BEHIND IT. 604 00:20:55,160 --> 00:20:56,440 AND THOSE WHO HAVE BEEN INVOLVED 605 00:20:56,440 --> 00:20:57,480 IN WORKSHOP PLANNING KNOW THAT 606 00:20:57,480 --> 00:20:58,960 AND A THOSE OF YOU WHO ARE HERE 607 00:20:58,960 --> 00:21:00,080 WILL RECOGNIZE THAT THROUGHOUT 608 00:21:00,080 --> 00:21:01,080 THE SESSIONS TODAY AND TOMORROW, 609 00:21:01,080 --> 00:21:07,400 SO CLAY, PLEASE. 610 00:21:07,400 --> 00:21:08,280 >>THANK YOU, MATT. 611 00:21:08,280 --> 00:21:10,000 I WANT TO REPEAT MATT'S WELCOME 612 00:21:10,000 --> 00:21:11,520 AND THANKS TO EVERYBODY WHO'S 613 00:21:11,520 --> 00:21:13,840 HERE TO SPEAK AND DISCUSS AND 614 00:21:13,840 --> 00:21:15,480 OUR PARTICIPANTS ESPECIALLY, AND 615 00:21:15,480 --> 00:21:17,440 THANKS TO THOSE WHO HAVE HELPED 616 00:21:17,440 --> 00:21:27,840 COORDINATE THE WORKSHOP. 617 00:21:41,240 --> 00:21:50,600 ONE MOMENT. 618 00:21:50,600 --> 00:21:55,640 NEXT SLIDE, PLEASE. 619 00:21:55,640 --> 00:21:56,960 SO AS MATT MENTIONED, THERE'S A 620 00:21:56,960 --> 00:21:58,040 LOT OF WORK, MOST OF YOU HAVE 621 00:21:58,040 --> 00:21:59,360 KNOW THERE'S A LOT OF INTEREST 622 00:21:59,360 --> 00:22:00,800 NOW IN RETURNING INDIVIDUAL 623 00:22:00,800 --> 00:22:01,880 RESULTS TO RESEARCH 624 00:22:01,880 --> 00:22:02,960 PARTICIPANTS, BUT THERE ARE SOME 625 00:22:02,960 --> 00:22:05,920 GAPS TO FILL. 626 00:22:05,920 --> 00:22:07,960 OUR PURPOSE FOR THIS WORKSHOP IS 627 00:22:07,960 --> 00:22:09,400 TO IDENTIFY BEST PRACTICES FOR 628 00:22:09,400 --> 00:22:11,120 LARGE SAMPLE STUDIES OF 629 00:22:11,120 --> 00:22:12,360 PREGNANCY AND CHILDHOOD TO 630 00:22:12,360 --> 00:22:13,920 ETHICALLY AND FEASIBLY RETURN 631 00:22:13,920 --> 00:22:14,960 INDIVIDUAL RESEARCH RESULTS TO 632 00:22:14,960 --> 00:22:15,400 PARTICIPANTS. 633 00:22:15,400 --> 00:22:18,920 AND OUR WORKSHOP HAS BEEN 634 00:22:18,920 --> 00:22:20,200 ORGANIZED AND THOUGHT ABOUT WITH 635 00:22:20,200 --> 00:22:22,200 SOME CROSS-CUTTING THEMES, SO 636 00:22:22,200 --> 00:22:23,640 HOW SHOULD RECOMMENDATIONS 637 00:22:23,640 --> 00:22:24,840 DIFFER FOR RETURNING INDIVIDUAL 638 00:22:24,840 --> 00:22:26,680 RESULTS TO PREGNANT PEOPLE AND 639 00:22:26,680 --> 00:22:28,120 CHILDREN VERSUS THOSE OF OTHER 640 00:22:28,120 --> 00:22:30,200 ADULTS? 641 00:22:30,200 --> 00:22:32,840 ALSO, MOST RESEARCH ON RETURNING 642 00:22:32,840 --> 00:22:36,440 RESULTS HAS FOCUSED ON GENETICS 643 00:22:36,440 --> 00:22:37,280 RESULTS, VERY IMPORTANT AND 644 00:22:37,280 --> 00:22:38,360 INTERESTING, BUT HOW CAN WE 645 00:22:38,360 --> 00:22:39,800 BROADEN TO INCLUDE ENVIRONMENTAL 646 00:22:39,800 --> 00:22:42,320 DATA FROM BIOASSAYS, PHYSICAL 647 00:22:42,320 --> 00:22:43,720 MEASURES, SELF-REPORTS AND OTHER 648 00:22:43,720 --> 00:22:45,680 KIND OF THINGS THAT RESEARCH 649 00:22:45,680 --> 00:22:48,360 PARTICIPANTS ARE INTERESTED IN 650 00:22:48,360 --> 00:22:49,680 HEARING ABOUT, AND THAT LARGE 651 00:22:49,680 --> 00:22:51,400 PROGRAMS LIKE ECHO HAVE TO 652 00:22:51,400 --> 00:22:52,960 OFFER. 653 00:22:52,960 --> 00:22:55,560 AND THEN ALSO HOW CAN WE 654 00:22:55,560 --> 00:22:57,200 FACILITATE EQUITY IN THE RETURN 655 00:22:57,200 --> 00:23:00,600 OF INDIVIDUAL RESULTS? 656 00:23:00,600 --> 00:23:02,640 SO JUST BY BROAD OVERVIEW, OUR 657 00:23:02,640 --> 00:23:04,760 WORKSHOP IS ORGANIZED INTO FIVE 658 00:23:04,760 --> 00:23:05,040 SESSIONS. 659 00:23:05,040 --> 00:23:06,480 TODAY WE'LL HAVE HISTORY AND 660 00:23:06,480 --> 00:23:07,640 PRINCIPLES FOR RETURNING 661 00:23:07,640 --> 00:23:11,080 INDIVIDUAL RESEARCH RESULTS. 662 00:23:11,080 --> 00:23:12,160 WE'LL HAVE A SECOND SESSION ON 663 00:23:12,160 --> 00:23:13,840 THE VALUE OF INDIVIDUAL RESULTS 664 00:23:13,840 --> 00:23:15,480 TO PARTICIPANTS FROM THEIR OWN 665 00:23:15,480 --> 00:23:16,200 PERSPECTIVE. 666 00:23:16,200 --> 00:23:17,920 AND FORTUNATELY AND LUCKILY 667 00:23:17,920 --> 00:23:19,200 WE'LL BE ABLE TO HEAR FROM SOME 668 00:23:19,200 --> 00:23:23,120 OF OUR ECHO PARTICIPANTS IN THAT 669 00:23:23,120 --> 00:23:23,560 SESSION. 670 00:23:23,560 --> 00:23:25,520 ALSO WE'LL HEAR ABOUT 671 00:23:25,520 --> 00:23:26,240 DETERMINING WHICH INDIVIDUAL 672 00:23:26,240 --> 00:23:27,600 RESULTS TO RETURN TO 673 00:23:27,600 --> 00:23:27,960 PARTICIPANTS. 674 00:23:27,960 --> 00:23:29,680 THAT'S A CHALLENGING ISSUE IN 675 00:23:29,680 --> 00:23:31,560 MANY RESPECTS AND WE'LL HEAR 676 00:23:31,560 --> 00:23:33,080 ABOUT HOW TO MAKE SOME OF THOSE 677 00:23:33,080 --> 00:23:35,040 DECISIONS. 678 00:23:35,040 --> 00:23:38,440 THEN ON TOMORROW, WE WILL HEAR 679 00:23:38,440 --> 00:23:41,480 ABOUT WHEN AND HOW TO RETURN 680 00:23:41,480 --> 00:23:42,920 INDIVIDUAL RESULTS IN SESSION 4, 681 00:23:42,920 --> 00:23:46,440 AND THEN WE'LL HAVE A FINAL 682 00:23:46,440 --> 00:23:48,080 WRAP-UP SESSION WHERE WE'LL 683 00:23:48,080 --> 00:23:50,160 REALLY TRY TO DERIVE SOME ACTUAL 684 00:23:50,160 --> 00:23:51,680 PRINCIPLES AND PRACTICES MOVING 685 00:23:51,680 --> 00:23:53,520 FORWARD FOR LARGE STUDIES OF 686 00:23:53,520 --> 00:23:58,560 PREGNANCY AND CHILDHOOD. 687 00:23:58,560 --> 00:24:01,440 SO JUST A QUICK GROUNDWORK FOR 688 00:24:01,440 --> 00:24:02,640 THE FORMAT OF THE SESSIONS. 689 00:24:02,640 --> 00:24:04,480 THE TALKS WILL BE 15 MINUTES, 690 00:24:04,480 --> 00:24:06,200 AND THEN THERE WILL BE FIVE 691 00:24:06,200 --> 00:24:08,720 MINUTES FOR QUESTIONS AFTER EACH 692 00:24:08,720 --> 00:24:09,400 TALK. 693 00:24:09,400 --> 00:24:12,560 FOR SESSIONS 1, 3 AND 4, THERE 694 00:24:12,560 --> 00:24:14,480 WILL BE A DISCUSSANT WITH FIVE 695 00:24:14,480 --> 00:24:16,720 MINUTES, AND THEN OPEN 696 00:24:16,720 --> 00:24:19,440 DISCUSSION FOR 50 MINUTES, OF 697 00:24:19,440 --> 00:24:20,880 WHICH EVERYONE IN THE ROOM AND 698 00:24:20,880 --> 00:24:23,920 FOLKS ONLINE CAN RAISE THEIR 699 00:24:23,920 --> 00:24:25,560 HAND, BE ACKNOWLEDGED BY THE 700 00:24:25,560 --> 00:24:27,440 MODERATOR, AND ASK A QUESTION. 701 00:24:27,440 --> 00:24:30,520 FOR PEOPLE ONLINE, THERE WILL BE 702 00:24:30,520 --> 00:24:33,760 A ZOOM MONITOR, WHO WILL BE 703 00:24:33,760 --> 00:24:36,000 LOOKING AT QUESTIONS, SO GO INTO 704 00:24:36,000 --> 00:24:37,400 THE CHAT AND ENTER A QUESTION. 705 00:24:37,400 --> 00:24:38,800 THERE WILL BE MORE DETAILS ABOUT 706 00:24:38,800 --> 00:24:40,560 THAT SOON. 707 00:24:40,560 --> 00:24:43,000 AND THEN SESSION 2, THERE WILL 708 00:24:43,000 --> 00:24:46,560 BE A PARTICIPANT PANEL THAT WILL 709 00:24:46,560 --> 00:24:48,000 BE FOR 50 MINUTES INSTEAD OF THE 710 00:24:48,000 --> 00:24:49,000 OPEN DISCUSSION, AND THAT'S 711 00:24:49,000 --> 00:24:51,080 WHERE WE'LL GET TO HEAR DIRECTLY 712 00:24:51,080 --> 00:24:57,720 FROM OUR PARTICIPANTS. 713 00:24:57,720 --> 00:25:00,280 SO FOR MORE DETAIL ON SPEAKER, 714 00:25:00,280 --> 00:25:01,680 DISCUSSANTS AND PANEL BUY YOES, 715 00:25:01,680 --> 00:25:03,080 WE ASK YOU TO REFERENCE THE 716 00:25:03,080 --> 00:25:04,400 PROGRAM BOOK TO SAVE TIME, WE'LL 717 00:25:04,400 --> 00:25:06,800 BE KIND OF BRIEF WITH SPEAKER 718 00:25:06,800 --> 00:25:08,040 INTRODUCTIONS AND DISCUSSANT 719 00:25:08,040 --> 00:25:09,280 INTRODUCTIONS BUT THEIR BIOS ARE 720 00:25:09,280 --> 00:25:10,760 ON THE PROGRAM BOOK WHICH IS 721 00:25:10,760 --> 00:25:12,600 ONLINE, WHICH YOU SHOULD HAVE 722 00:25:12,600 --> 00:25:18,240 RECEIVED INFORMATION ABOUT. 723 00:25:18,240 --> 00:25:19,480 SO FOR SOME HOUSEKEEPING FOR 724 00:25:19,480 --> 00:25:23,200 PEOPLE IN THE ROOM, PLEASE PAY 725 00:25:23,200 --> 00:25:24,640 ATTENTION IF YOU'RE A SPEAKER OR 726 00:25:24,640 --> 00:25:25,400 DISCUSSANT TO THE TIME. 727 00:25:25,400 --> 00:25:27,480 WE'RE GOING TO BE ON A STRICT 728 00:25:27,480 --> 00:25:32,160 TIME LIMIT AFTER I FINISH, AND 729 00:25:32,160 --> 00:25:34,720 FOR SPEAKERS IN THE 15-MINUTE 730 00:25:34,720 --> 00:25:36,480 SLOTS, THERE WILL BE A -- 731 00:25:36,480 --> 00:25:38,960 THERE'S A LIGHT UP HERE AND 732 00:25:38,960 --> 00:25:41,320 YOU'LL BE GREEN FOR THE FIRST 13 733 00:25:41,320 --> 00:25:41,720 MINUTES. 734 00:25:41,720 --> 00:25:43,040 WHEN YOU'RE DOWN TO TWO MINUTES, 735 00:25:43,040 --> 00:25:45,200 THE LIGHT WILL TURN YELLOW. 736 00:25:45,200 --> 00:25:46,520 THE YELLOW LIGHT INDICATES THAT 737 00:25:46,520 --> 00:25:48,040 YOU HAVE 2 MINUTES LEFT TO WRAP 738 00:25:48,040 --> 00:25:48,600 THINGS UP. 739 00:25:48,600 --> 00:25:50,040 AND THEN WHEN IT'S RED, IT'S 740 00:25:50,040 --> 00:25:52,840 TIME TO STOP SPEAKING. 741 00:25:52,840 --> 00:25:54,600 FOR THE DISCUSSANT PERIODS, THE 742 00:25:54,600 --> 00:25:58,080 YELLOW LIGHT WILL COME ON IN 743 00:25:58,080 --> 00:26:00,240 YOUR FIVE-MINUTE PRESENTATION AT 744 00:26:00,240 --> 00:26:03,400 THE ONE-MINUTE MARK. 745 00:26:03,400 --> 00:26:05,720 FOR PANELISTS AND MODERATORS, 746 00:26:05,720 --> 00:26:06,640 PLEASE BRING YOUR TENT CARDS 747 00:26:06,640 --> 00:26:07,720 WITH YOU WHEN YOU COME TO THE 748 00:26:07,720 --> 00:26:11,360 FRONT TABLE. 749 00:26:11,360 --> 00:26:12,760 AND FOR EVERYONE IN THE ROOM, 750 00:26:12,760 --> 00:26:14,880 LET'S TRY TO KEEP OUR COMPUTERS 751 00:26:14,880 --> 00:26:18,240 OFF AS MUCH AS WE CAN, BUT IF 752 00:26:18,240 --> 00:26:21,280 YOU HAVE TO TURN IT ON TO DO 753 00:26:21,280 --> 00:26:22,400 SOMETHING CRITICAL AND URGENT, 754 00:26:22,400 --> 00:26:23,480 JUST MAKE SURE TO MUTE YOUR 755 00:26:23,480 --> 00:26:26,440 SOUND. 756 00:26:26,440 --> 00:26:31,800 AND FOR PEOPLE TO SHARE INPUT 757 00:26:31,800 --> 00:26:32,880 DURING Q & A PERIODS, PLEASE 758 00:26:32,880 --> 00:26:36,240 RAISE YOUR HAND FOR THE 759 00:26:36,240 --> 00:26:37,600 MODERATOR TO ADDRESS YOU, AND 760 00:26:37,600 --> 00:26:39,040 THEN YOU NEED TO TURN ON YOUR 761 00:26:39,040 --> 00:26:40,200 MICROPHONE EVERY TIME YOU SPEAK. 762 00:26:40,200 --> 00:26:41,440 AND THEN WHEN YOU'RE DONE 763 00:26:41,440 --> 00:26:42,760 SPEAKING, TURN IT OFF SO THAT WE 764 00:26:42,760 --> 00:26:46,160 DON'T GET FEEDBACK IN THE ROOM. 765 00:26:46,160 --> 00:26:48,440 AND YOU ALL DID THAT VERY WELL 766 00:26:48,440 --> 00:26:49,080 DURING INTRODUCTIONS. 767 00:26:49,080 --> 00:26:51,040 SO FOR BATHROOMS AND WATER 768 00:26:51,040 --> 00:26:52,240 FOUNTAIN, JUST EXIT THE 769 00:26:52,240 --> 00:26:54,200 CONFERENCE AREA, TURN LEFT, GO 770 00:26:54,200 --> 00:26:55,520 TO THE END OF THE HALL AND MAKE 771 00:26:55,520 --> 00:26:57,480 ANOTHER LEFT AND THEN GO THROUGH 772 00:26:57,480 --> 00:26:58,400 THOSE DOORS. 773 00:26:58,400 --> 00:27:00,920 AND WE DO HAVE A COUPLE OF 774 00:27:00,920 --> 00:27:01,920 BREAKS DURING THE SESSIONS 775 00:27:01,920 --> 00:27:08,200 TODAY. 776 00:27:08,200 --> 00:27:10,800 SO VIRTUAL ATTENDEES, YOU'LL BE 777 00:27:10,800 --> 00:27:12,280 MUTED THROUGHOUT THE WORKSHOP, 778 00:27:12,280 --> 00:27:14,280 BUT TO SHARE A QUESTION DURING 779 00:27:14,280 --> 00:27:18,520 THE Q & A, THE 50-MINUTE Q & A 780 00:27:18,520 --> 00:27:22,880 PERIODS, YOU CAN TYPE IT INTO 781 00:27:22,880 --> 00:27:24,960 THE INTERFACE AS SHOWN ON THE 782 00:27:24,960 --> 00:27:25,200 RIGHT. 783 00:27:25,200 --> 00:27:30,440 PRESS THE Q & A BUTTON AND ENTER 784 00:27:30,440 --> 00:27:31,280 YOUR QUESTION. 785 00:27:31,280 --> 00:27:32,920 IF YOU PREFER TO REMAIN 786 00:27:32,920 --> 00:27:34,120 ANONYMOUS, PLEASE INDICATE THAT 787 00:27:34,120 --> 00:27:36,320 IN YOUR ZOOM Q & A COMMENT, AND 788 00:27:36,320 --> 00:27:37,640 WE WILL GET TO AS MANY QUESTIONS 789 00:27:37,640 --> 00:27:38,840 AS TIME ALLOWS. 790 00:27:38,840 --> 00:27:42,760 THETHEY WILL BE READ IN THE ROOF 791 00:27:42,760 --> 00:27:46,600 SELECTED BY THE ZOOM MONITOR, 792 00:27:46,600 --> 00:27:48,120 AND ACKNOWLEDGED BY THE 793 00:27:48,120 --> 00:27:51,400 MODERATOR OF THE SESSION. 794 00:27:51,400 --> 00:27:52,400 AND ONE LAST THING. 795 00:27:52,400 --> 00:27:53,960 OTHER ZOOM ATTENDEES WILL NOT BE 796 00:27:53,960 --> 00:27:55,200 ABLE TO SEE YOUR QUESTION, SO 797 00:27:55,200 --> 00:27:57,120 FEEL FREE TO ASK WHATEVER YOU 798 00:27:57,120 --> 00:27:57,440 WANT. 799 00:27:57,440 --> 00:27:59,320 AND IF YOU HAVE ANY ISSUES WITH 800 00:27:59,320 --> 00:28:03,480 TECH, PLEASE EMAIL AMANDA 801 00:28:03,480 --> 00:28:04,680 HENNESSEY AT THE EMAIL ADDRESS 802 00:28:04,680 --> 00:28:08,480 HERE. 803 00:28:08,480 --> 00:28:10,360 AND THEN SOME ADDITIONAL 804 00:28:10,360 --> 00:28:10,920 HOUSEKEEPING. 805 00:28:10,920 --> 00:28:12,440 IT'S A HYBRID MEETING SO AGAIN, 806 00:28:12,440 --> 00:28:13,640 USE YOUR MICS EVERY TIME YOU 807 00:28:13,640 --> 00:28:16,040 SPEAK. 808 00:28:16,040 --> 00:28:17,600 AND KEEP COMPUTERS OFF IF 809 00:28:17,600 --> 00:28:18,840 POSSIBLE. 810 00:28:18,840 --> 00:28:20,320 THE BREAK PERIODS ARE AT 11:15, 811 00:28:20,320 --> 00:28:22,760 WE'LL HAVE A 10-MINUTE BIOBREAK, 812 00:28:22,760 --> 00:28:24,680 AND THEN OUR LUNCH BREAK WILL BE 813 00:28:24,680 --> 00:28:26,560 AT 1:00, AFTER WE FINISH THE 814 00:28:26,560 --> 00:28:34,400 PARTICIPANT PANEL. 815 00:28:34,400 --> 00:28:36,200 IF YOU'RE A TRAVELING SPEAKER, 816 00:28:36,200 --> 00:28:37,480 YOU ORDERED YOUR LUNCH FOR 817 00:28:37,480 --> 00:28:41,320 DELIVERY AND IT WILL ARRIVE HEE 818 00:28:41,320 --> 00:28:42,880 AND THEN EVERYBODY ELSE IS FREE 819 00:28:42,880 --> 00:28:44,200 TO VISIT THE SMALL CAFE THAT'S 820 00:28:44,200 --> 00:28:45,560 ON THE OTHER SIDE OF THIS 821 00:28:45,560 --> 00:28:46,040 COMPLEX. 822 00:28:46,040 --> 00:28:47,280 IT WILL BE EASY TO FIND AND 823 00:28:47,280 --> 00:28:48,280 THERE WILL BE A GROUP GOING. 824 00:28:48,280 --> 00:28:49,920 AND I WANT TO ALSO ACKNOWLEDGE 825 00:28:49,920 --> 00:28:54,000 OUR WORKSHOP PARTNERS, CARLY AND 826 00:28:54,000 --> 00:28:55,560 AMANDA ARE AT THIS TABLE HERE IF 827 00:28:55,560 --> 00:28:56,760 YOU HAVE ANY TECHNICAL 828 00:28:56,760 --> 00:28:57,800 QUESTIONS, AND THEN MICHAEL HAS 829 00:28:57,800 --> 00:29:00,000 BEEN IN AND OUT OF THE ROOM, AND 830 00:29:00,000 --> 00:29:06,680 HE'S ALSO VERY HELPFUL. 831 00:29:06,680 --> 00:29:07,080 OKAY. 832 00:29:07,080 --> 00:29:09,640 NOW I WANT TO INTRODUCE KIM 833 00:29:09,640 --> 00:29:11,040 MCALLISTER, WHO WILL BE 834 00:29:11,040 --> 00:29:21,440 MODERATING SESSION 1. 835 00:29:25,560 --> 00:29:27,720 >>OKAY, THANKS, CLAY, AND GOOD 836 00:29:27,720 --> 00:29:29,520 MORNING, EVERYONE. 837 00:29:29,520 --> 00:29:31,720 I AM A PROGRAM OFFICER AT THE 838 00:29:31,720 --> 00:29:32,280 NATIONAL INSTITUTE OF 839 00:29:32,280 --> 00:29:33,920 ENVIRONMENTAL HEALTH SCIENCES. 840 00:29:33,920 --> 00:29:35,640 AND I AM GOING TO MODERATE THIS 841 00:29:35,640 --> 00:29:37,080 FIRST SESSION. 842 00:29:37,080 --> 00:29:40,040 WHICH IS ENTITLED "THE HISTORY 843 00:29:40,040 --> 00:29:43,440 AND PRINCIPLES FOR RETURNING 844 00:29:43,440 --> 00:29:44,680 INDIVIDUAL RESEARCH RESULTS." 845 00:29:44,680 --> 00:29:46,480 THIS SESSION IS GOING TO TRY TO 846 00:29:46,480 --> 00:29:47,600 INTRODUCE THE CONCEPT OF 847 00:29:47,600 --> 00:29:49,080 REPORT-BACK WITH A BRIEF HISTORY 848 00:29:49,080 --> 00:29:51,000 AND EXAMINATION OF SOME OF THE 849 00:29:51,000 --> 00:29:52,720 GUIDING PRINCIPLES. 850 00:29:52,720 --> 00:29:54,840 AS WAS ALREADY MENTIONED 851 00:29:54,840 --> 00:29:57,000 BRIEFLY, THE OBLIGATIONS TO 852 00:29:57,000 --> 00:29:58,680 REPORT BACK HAVE SUBSTANTIALLY 853 00:29:58,680 --> 00:30:00,840 EVOLVED OVER THE PAST COUPLE OF 854 00:30:00,840 --> 00:30:02,480 DECADES, SO THERE IS A BROADER 855 00:30:02,480 --> 00:30:04,560 UNDERSTANDING OF SEEING THE 856 00:30:04,560 --> 00:30:06,600 COMMUNITY AS A FULL PARTNER, AND 857 00:30:06,600 --> 00:30:09,680 PERHAPS EVEN A CO-OWNER OF DATA 858 00:30:09,680 --> 00:30:10,600 IN THE RESEARCH PROJECT. 859 00:30:10,600 --> 00:30:12,960 SO THERE'S A GENERAL EXPECTATION 860 00:30:12,960 --> 00:30:16,040 THAT RESULTS SHOULD BE RETURNED 861 00:30:16,040 --> 00:30:18,120 WHEN POSSIBLE, AS A MATTER OF 862 00:30:18,120 --> 00:30:19,880 RECIPROCITY, RESPECT, 863 00:30:19,880 --> 00:30:21,840 TRANSPARENCY, AND TRUST. 864 00:30:21,840 --> 00:30:26,880 BUT THIS IS A FAIR LEA NEW FAIRW 865 00:30:26,880 --> 00:30:28,080 RESEARCH PARADIGM FOR EVERYBODY 866 00:30:28,080 --> 00:30:29,480 AND THERE ARE A LOT OF 867 00:30:29,480 --> 00:30:30,720 COMPLEXITIES AND ETHICAL, LEGAL 868 00:30:30,720 --> 00:30:31,920 AND REGULATORY ISSUES TO 869 00:30:31,920 --> 00:30:33,640 CONSIDER WHEN DOING PLANNED 870 00:30:33,640 --> 00:30:35,960 DISCLOSURE OF RESEARCH FINDINGS. 871 00:30:35,960 --> 00:30:38,360 AND RELATED TO THE ECHO 872 00:30:38,360 --> 00:30:40,160 CONSORTIUM AND A LOT OF OTHER 873 00:30:40,160 --> 00:30:42,040 LARGE CONSORTIUM EFFORTS, AS 874 00:30:42,040 --> 00:30:43,400 MATT MENTIONED, WE ARE NOW 875 00:30:43,400 --> 00:30:45,360 MOVING FROM NOT JUST RETURNING 876 00:30:45,360 --> 00:30:47,360 GENOMICS RESULTS, BUT ALSO 877 00:30:47,360 --> 00:30:49,200 ENVIRONMENTAL RESULTS AND 878 00:30:49,200 --> 00:30:50,560 SOMETIMES EVEN GENE ENVIRONMENT 879 00:30:50,560 --> 00:30:52,400 INTERACTION RESULTS. 880 00:30:52,400 --> 00:30:53,440 SO THIS FIRST SESSION IS REALLY 881 00:30:53,440 --> 00:30:55,200 GOING TO TOUCH ON ALL OF THAT, 882 00:30:55,200 --> 00:30:57,160 AND REALLY TRY TO SET THE STAGE 883 00:30:57,160 --> 00:30:58,640 FOR ALL THE REMAINING SESSIONS 884 00:30:58,640 --> 00:31:01,320 IN THE WORKSHOP. 885 00:31:01,320 --> 00:31:03,200 AND I WANTED TO ACKNOWLEDGE 886 00:31:03,200 --> 00:31:04,520 DR. JEFF BOTKIN FROM UNIVERSITY 887 00:31:04,520 --> 00:31:05,920 OF UTAH AS THE CHAIR OF THIS 888 00:31:05,920 --> 00:31:07,320 SESSION. 889 00:31:07,320 --> 00:31:08,960 HE PUT A LOT OF TIME INTO 890 00:31:08,960 --> 00:31:11,040 HELPING TO ORGANIZE IT, AND HE 891 00:31:11,040 --> 00:31:13,720 IS THE FIRST SPEAKER. 892 00:31:13,720 --> 00:31:16,400 FOLLOWING HIM, WE WILL HAVE 893 00:31:16,400 --> 00:31:17,960 DR. KYLE BROTHERS FROM NORTON 894 00:31:17,960 --> 00:31:20,400 CHILDREN'S RESEARCH INSTITUTE AT 895 00:31:20,400 --> 00:31:21,280 UNIVERSITY OF LOUISVILLE, AND 896 00:31:21,280 --> 00:31:23,520 THEN WE WILL HAVE DR. ADAM 897 00:31:23,520 --> 00:31:24,840 BERGER FROM THE OFFICE OF 898 00:31:24,840 --> 00:31:27,440 SCIENCE POLICY AT NIH, AND THEN 899 00:31:27,440 --> 00:31:29,880 DISCUSSANT WILL BE DR. INGRID 900 00:31:29,880 --> 00:31:31,920 HOLM FROM THE BOSTON CHILDREN'S 901 00:31:31,920 --> 00:31:32,920 HOSPITAL AND HARVARD MEDICAL 902 00:31:32,920 --> 00:31:33,800 SCHOOL. 903 00:31:33,800 --> 00:31:35,240 AND AFTER THAT, THEN WE WILL 904 00:31:35,240 --> 00:31:37,960 HAVE AN OPEN DISCUSSION FOR THIS 905 00:31:37,960 --> 00:31:40,280 SESSION BEFORE IT ENDS. 906 00:31:40,280 --> 00:31:42,120 SO WITH THAT, I'D LIKE TO TURN 907 00:31:42,120 --> 00:31:52,520 THE PODIUM OVER TO JEFF. 908 00:31:58,840 --> 00:32:08,400 >>GOOD MORNING, EVERYBODY. 909 00:32:08,400 --> 00:32:09,040 WELL, THANK YOU. 910 00:32:09,040 --> 00:32:11,080 AND THANKS TO THE ORGANIZERS, 911 00:32:11,080 --> 00:32:13,080 MATT GILLMAN, CLAY MASH, FOR THE 912 00:32:13,080 --> 00:32:14,840 UPDATED WORK TOGETHER AND THE 913 00:32:14,840 --> 00:32:17,120 ABILITY TO CONTRIBUTE THIS VERY 914 00:32:17,120 --> 00:32:17,680 IMPORTANT ECHO PROJECT. 915 00:32:17,680 --> 00:32:19,640 I'M GOING TO TRY TO SET SOME OF 916 00:32:19,640 --> 00:32:20,760 THE CONTEXT FOR THIS DISCUSSION, 917 00:32:20,760 --> 00:32:22,280 AND WOULD START WITH A 918 00:32:22,280 --> 00:32:23,600 RECOGNITION THAT WE'RE TALKING 919 00:32:23,600 --> 00:32:25,680 ABOUT A POTENTIAL SPECTRUM OF 920 00:32:25,680 --> 00:32:27,080 RESULTS. 921 00:32:27,080 --> 00:32:29,160 PUBLIC RELEASE OF STUDY DATA, 922 00:32:29,160 --> 00:32:30,160 PUBLICATIONS, FOR EXAMPLE, 923 00:32:30,160 --> 00:32:31,880 PUBLICLY AVAILABLE DATABASES, 924 00:32:31,880 --> 00:32:33,320 THAT'S ONE FORM OF AVAILABLE 925 00:32:33,320 --> 00:32:35,720 RESULTS TO PARTICIPANTS. 926 00:32:35,720 --> 00:32:37,680 SECONDLY, THE RETURN OF GENERAL 927 00:32:37,680 --> 00:32:39,560 STUDY RESULTS TO PARTICIPANTS, 928 00:32:39,560 --> 00:32:41,720 WHAT DID THE RESEARCH FIND, WAS 929 00:32:41,720 --> 00:32:43,600 IT SUCCESSFUL, WHAT WERE THE 930 00:32:43,600 --> 00:32:44,360 CONCLUSIONS THAT WERE DRAWN BY 931 00:32:44,360 --> 00:32:45,680 THE STUDY? 932 00:32:45,680 --> 00:32:46,960 THIRD, WHAT WE'RE REALLY FOCUSED 933 00:32:46,960 --> 00:32:49,080 ON PRIMARILY WITH THIS WORKSHOP, 934 00:32:49,080 --> 00:32:50,280 WHICH IS A RETURN OF INDIVIDUAL 935 00:32:50,280 --> 00:32:51,680 STUDY RESULTS TO PARTICIPANTS, 936 00:32:51,680 --> 00:32:52,960 AND THEN THERE'S BEEN AN 937 00:32:52,960 --> 00:32:53,960 ENORMOUS AMOUNT OF DISCUSSION 938 00:32:53,960 --> 00:32:55,760 OVER THE YEARS, PARTICULARLY IN 939 00:32:55,760 --> 00:32:57,480 GENOMICS CONTEXT OF INCIDENTAL 940 00:32:57,480 --> 00:32:58,680 FINDINGS. 941 00:32:58,680 --> 00:33:00,440 AND I DON'T THINK WE'VE GOT TOO 942 00:33:00,440 --> 00:33:01,560 MUCH DISCUSSION OF THAT, BUT WE 943 00:33:01,560 --> 00:33:04,040 WANT TO KEEP THAT DOMAIN OF 944 00:33:04,040 --> 00:33:05,600 POTENTIAL FINDINGS IN MIND AS WE 945 00:33:05,600 --> 00:33:08,240 GO FORWARD. 946 00:33:08,240 --> 00:33:09,720 SO ONE THING I WANT TO EMPHASIZE 947 00:33:09,720 --> 00:33:10,880 HERE, AND AGAIN, THIS IS NOT 948 00:33:10,880 --> 00:33:13,560 REALLY THE FOCUS OF THIS 949 00:33:13,560 --> 00:33:15,440 WORKSHOP, BUT THE NOTION OF 950 00:33:15,440 --> 00:33:16,720 RETURNING GENERAL STUDY RESULTS 951 00:33:16,720 --> 00:33:19,520 TO PARTICIPANTS, TO ME, IS A 952 00:33:19,520 --> 00:33:21,560 MUCH UNDEREMPHASIZED DOMAIN. 953 00:33:21,560 --> 00:33:25,080 AND I THINK AS THE LITTLE 954 00:33:25,080 --> 00:33:26,360 CALLOUT AT THE TOP HERE SUGGESTS 955 00:33:26,360 --> 00:33:27,960 THAT WE REALLY MAY GET MANY OF 956 00:33:27,960 --> 00:33:30,640 THE ADVANTAGES AND LOSE SOME OF 957 00:33:30,640 --> 00:33:33,720 THE DISADVANTAGES AND RISK THAT 958 00:33:33,720 --> 00:33:34,800 GIVE FOLKS BACK WHAT HAPPENED 959 00:33:34,800 --> 00:33:35,600 WITH THE STUDY. 960 00:33:35,600 --> 00:33:38,480 IT'S A WAY OF HONORING THEIR 961 00:33:38,480 --> 00:33:39,040 PARTICIPANTS, HELPING THEM 962 00:33:39,040 --> 00:33:41,600 UNDERSTAND WHAT THEY CONTRIBUTED 963 00:33:41,600 --> 00:33:43,000 TO WITHOUT SOME OF THE 964 00:33:43,000 --> 00:33:43,680 COMPLEXITIES AROUND INDIVIDUAL 965 00:33:43,680 --> 00:33:45,400 OR PERSONAL RESULTS. 966 00:33:45,400 --> 00:33:47,080 SO WHEN I THINK THERE'S SOME 967 00:33:47,080 --> 00:33:50,120 DISCUSSION ABOUT CHALLENGES OR 968 00:33:50,120 --> 00:33:51,680 CIRCUMSTANCES IN WHICH IT'S NOT 969 00:33:51,680 --> 00:33:52,920 APPROPRIATE FOR INDIVIDUAL 970 00:33:52,920 --> 00:33:54,840 RESULTS, I THINK THIS FROM MY 971 00:33:54,840 --> 00:33:56,240 PERSPECTIVE OUGHT TO BE VIRTUAL 972 00:33:56,240 --> 00:33:58,640 BOILERPLATE FOR ALL RESEARCH 973 00:33:58,640 --> 00:34:00,360 WHERE YOU'RE MAINTAINING SOME 974 00:34:00,360 --> 00:34:01,360 CONTACT AND IDENTIFYING 975 00:34:01,360 --> 00:34:01,840 INFORMATION FOR THE 976 00:34:01,840 --> 00:34:09,200 PARTICIPANTS. 977 00:34:09,200 --> 00:34:11,880 LOOK LIKE WE'VE GOT ANOTHER 978 00:34:11,880 --> 00:34:15,920 FROZEN -- SO NEXT SLIDE, PLEASE. 979 00:34:15,920 --> 00:34:17,800 SO RETURN OF INDIVIDUAL RESULTS. 980 00:34:17,800 --> 00:34:19,080 THAT PARTICULAR SET OF ISSUES. 981 00:34:19,080 --> 00:34:20,720 I THINK THE OLD SCHOOL APPROACH, 982 00:34:20,720 --> 00:34:23,800 WHICH I WOULD SAY MAYBE AROUND 983 00:34:23,800 --> 00:34:26,000 PRE-2000 OR SO, IT WAS SIMPLY 984 00:34:26,000 --> 00:34:26,880 NOT DONE. 985 00:34:26,880 --> 00:34:28,960 AND I REMEMBER SO MANY TIMES AS 986 00:34:28,960 --> 00:34:31,160 AN I.R.B. MEMBER AND 987 00:34:31,160 --> 00:34:32,560 ADMINISTRATOR AT THE UNIVERSITY, 988 00:34:32,560 --> 00:34:34,160 CONSENT FORMS WOULD SIMPLY SAY, 989 00:34:34,160 --> 00:34:35,360 YOU'RE NOT GETTING ANY RESULTS 990 00:34:35,360 --> 00:34:35,600 BACK. 991 00:34:35,600 --> 00:34:38,240 AND THAT WAS SO EASY FOR 992 00:34:38,240 --> 00:34:39,880 INVESTIGATORS, FOR REALLY GOOD 993 00:34:39,880 --> 00:34:41,760 REASONS, I WOULD SAY. 994 00:34:41,760 --> 00:34:44,920 THE OBLIGATIONS WERE UNCERTAIN. 995 00:34:44,920 --> 00:34:48,120 THERE WAS CERTAIN NEED TO 996 00:34:48,120 --> 00:34:49,480 PROTECT PEOPLE FROM WHAT MIGHT 997 00:34:49,480 --> 00:34:50,880 PROVE TO BE INACCURATE OR 998 00:34:50,880 --> 00:34:51,480 MISLEADING INFORMATION. 999 00:34:51,480 --> 00:34:52,720 THERE'S A LACK OF TRADITION 1000 00:34:52,720 --> 00:34:54,240 THERE, PROTOCOLS, PEER REVIEW. 1001 00:34:54,240 --> 00:34:56,200 HOW DO WE DO THIS IN THE RIGHT 1002 00:34:56,200 --> 00:34:56,480 WAY? 1003 00:34:56,480 --> 00:34:57,560 PEOPLE REALLY HAD NOT THOUGHT 1004 00:34:57,560 --> 00:34:58,720 THAT THROUGH. 1005 00:34:58,720 --> 00:35:00,400 IT WAS A COMPLEX TASK TO DO IT 1006 00:35:00,400 --> 00:35:01,680 EFFECTIVELY. 1007 00:35:01,680 --> 00:35:03,560 THIS IS NOT EASY. 1008 00:35:03,560 --> 00:35:05,160 AND THEN LASTLY, YOU WOULD NEED 1009 00:35:05,160 --> 00:35:06,360 ADDITIONAL FUNDING AND 1010 00:35:06,360 --> 00:35:07,360 RESOURCES, AND YOU'D HAVE TO 1011 00:35:07,360 --> 00:35:08,760 PLAN THAT AT THE BEGINNING OF 1012 00:35:08,760 --> 00:35:10,000 YOUR RESEARCH PROTOCOL IN ORDER 1013 00:35:10,000 --> 00:35:11,160 TO HAVE THOSE RESOURCES 1014 00:35:11,160 --> 00:35:11,640 AVAILABLE. 1015 00:35:11,640 --> 00:35:13,080 SO FOR ALL OF THOSE KINDS OF 1016 00:35:13,080 --> 00:35:15,000 REASONS, FOLKS SIMPLY SAID, 1017 00:35:15,000 --> 00:35:16,000 YOU'RE NOT GETTING ANY RESULTS 1018 00:35:16,000 --> 00:35:16,320 BACK. 1019 00:35:16,320 --> 00:35:17,840 NOW, I WOULD SAY WE WANT TO MAKE 1020 00:35:17,840 --> 00:35:21,040 A DISTINCTION HERE BETWEEN SORT 1021 00:35:21,040 --> 00:35:22,560 OF RESEARCH RESULTS THAT ARE 1022 00:35:22,560 --> 00:35:24,080 BEING CONDUCTED OR PRODUCED OUT 1023 00:35:24,080 --> 00:35:25,960 OF, SAY, A CLIA CERTIFIED LAB. 1024 00:35:25,960 --> 00:35:27,920 A LOT OF DRUG STUDIES IN 1025 00:35:27,920 --> 00:35:28,640 PARTICULAR DO PREGNANCY TEST, 1026 00:35:28,640 --> 00:35:30,240 THEY MAY DO LIVER FUNCTION 1027 00:35:30,240 --> 00:35:31,520 TESTS, CBCs, THOSE SORTS OF 1028 00:35:31,520 --> 00:35:32,720 THINGS. 1029 00:35:32,720 --> 00:35:33,720 I DON'T THINK THERE'S BEEN MUCH 1030 00:35:33,720 --> 00:35:35,040 OF A PROBLEM OVER THE YEARS IN 1031 00:35:35,040 --> 00:35:35,920 RETURNING THOSE KINDS OF 1032 00:35:35,920 --> 00:35:36,960 RESULTS, AT LEAST WHEN THERE'S 1033 00:35:36,960 --> 00:35:38,880 SOME SORT OF RED FLAG RESULT. 1034 00:35:38,880 --> 00:35:40,480 YOU MAY NOT GET NORMAL RESULTS, 1035 00:35:40,480 --> 00:35:41,720 BUT IF THERE'S A PROBLEM THERE, 1036 00:35:41,720 --> 00:35:43,120 I THINK THE TRADITION HAS BEEN 1037 00:35:43,120 --> 00:35:44,800 PRETTY STRONG TO SAY PEOPLE ARE 1038 00:35:44,800 --> 00:35:46,520 GOING TO TELL YOU ABOUT THAT. 1039 00:35:46,520 --> 00:35:50,160 SO THAT'S REALLY NOT BEEN A 1040 00:35:50,160 --> 00:35:51,240 PROBLEMATIC AREA. 1041 00:35:51,240 --> 00:35:52,560 BUT ALSO, I THINK THE LITERATURE 1042 00:35:52,560 --> 00:35:54,720 IS PRETTY CLEAR, PEOPLE WANT AND 1043 00:35:54,720 --> 00:35:55,280 EXPECT RESULTS. 1044 00:35:55,280 --> 00:35:56,640 AND IT'S PRETTY CLEAR, TOO, THAT 1045 00:35:56,640 --> 00:35:58,280 EVEN WHEN YOU TELL FOLKS, YOU'RE 1046 00:35:58,280 --> 00:36:00,200 NOT GOING TO GET ANYTHING BACK, 1047 00:36:00,200 --> 00:36:01,960 STILL THEY'RE SAYING, WELL, 1048 00:36:01,960 --> 00:36:02,920 OKAY, WHERE'S MY RESULTS? 1049 00:36:02,920 --> 00:36:04,800 SO THERE'S A MISMATCH BETWEEN 1050 00:36:04,800 --> 00:36:06,120 WHAT THE CONSENT FORM MIGHT SAY 1051 00:36:06,120 --> 00:36:08,960 AND WHAT PEOPLE'S EXPECTATIONS 1052 00:36:08,960 --> 00:36:14,360 ARE. 1053 00:36:14,360 --> 00:36:16,640 SO WHAT'S THE CONTEXT HERE? 1054 00:36:16,640 --> 00:36:18,200 I THINK IMPORTANT TO RECOGNIZE 1055 00:36:18,200 --> 00:36:20,280 THAT WHEN RESULTS ARE NOT 1056 00:36:20,280 --> 00:36:23,120 RETURNED, THEN THE INFORMATIONAL 1057 00:36:23,120 --> 00:36:26,240 RISK OF THE RESEARCH IS CLOSE TO 1058 00:36:26,240 --> 00:36:26,440 ZERO. 1059 00:36:26,440 --> 00:36:29,040 I THINK WE HAVE, AS A RESEARCH 1060 00:36:29,040 --> 00:36:30,960 ENTERPRISE BROADLY, AN EXCELLENT 1061 00:36:30,960 --> 00:36:32,200 TRACK RECORD OF PROTECTING 1062 00:36:32,200 --> 00:36:33,520 PRIVACY AND CONFIDENTIALITY. 1063 00:36:33,520 --> 00:36:35,080 THESE ARE SORT OF PART OF THE 1064 00:36:35,080 --> 00:36:36,200 SO-CALLED INFORMATIONAL RISKS OF 1065 00:36:36,200 --> 00:36:37,480 THE RESEARCH ENTERPRISE. 1066 00:36:37,480 --> 00:36:39,200 BUT THE RISK OF HARM FROM 1067 00:36:39,200 --> 00:36:42,800 INFORMATION INCRO INCREASES WHEN 1068 00:36:42,800 --> 00:36:43,560 RESULTS ARE RETURNED. 1069 00:36:43,560 --> 00:36:45,680 SO THE ETHICAL CHALLENGE HERE IS 1070 00:36:45,680 --> 00:36:46,880 TO BALANCE THE BENEFITS OF 1071 00:36:46,880 --> 00:36:48,400 DISCLOSURE WITH THE RISKS OF 1072 00:36:48,400 --> 00:36:51,560 DISCLOSURE. 1073 00:36:51,560 --> 00:36:52,920 OUR CHALLENGE, OF COURSE, IS TO 1074 00:36:52,920 --> 00:36:54,000 HELP FIND WHAT THOSE MIGHT BE IN 1075 00:36:54,000 --> 00:36:55,000 A PARTICULAR CONTEXT. 1076 00:36:55,000 --> 00:36:56,680 BUT THIS IS ONE ELEMENT, THE 1077 00:36:56,680 --> 00:36:58,480 RETURN OF RESULTS IS ONE ELEMENT 1078 00:36:58,480 --> 00:37:00,440 OF A MUCH LARGER LANDSCAPE WHERE 1079 00:37:00,440 --> 00:37:01,880 THE RESEARCH COMMUNITY IS TRYING 1080 00:37:01,880 --> 00:37:04,080 TO DO A MUCH BETTER JOB IN BEING 1081 00:37:04,080 --> 00:37:06,040 TRUE PARTNERS WITH RESEARCH 1082 00:37:06,040 --> 00:37:07,080 PARTICIPANTS. 1083 00:37:07,080 --> 00:37:09,520 AND THE WHOLE NOTION OF SUBJECTS 1084 00:37:09,520 --> 00:37:12,840 AND INVESTIGATORS IS GOING AWAY, 1085 00:37:12,840 --> 00:37:14,600 EVEN WITH TERMINOLOGY CHANGED TO 1086 00:37:14,600 --> 00:37:16,240 SAY NOW WE'RE WORKING WITH 1087 00:37:16,240 --> 00:37:17,320 PARTICIPANTS AS OPPOSED TO 1088 00:37:17,320 --> 00:37:24,200 SUBJECTS. 1089 00:37:24,200 --> 00:37:26,120 SO WHAT ARE SOME OF THE CONCERNS 1090 00:37:26,120 --> 00:37:26,320 HERE? 1091 00:37:26,320 --> 00:37:27,800 WHAT ARE THE BROADER ISSUES? 1092 00:37:27,800 --> 00:37:29,240 WELL, RESEARCH RESULTS ARE OFTEN 1093 00:37:29,240 --> 00:37:31,200 UNCERTAIN IN TERMS OF VALIDITY 1094 00:37:31,200 --> 00:37:33,080 AND UTILITY. 1095 00:37:33,080 --> 00:37:35,640 IS THE ANALYSIS ACCURATE? 1096 00:37:35,640 --> 00:37:37,280 THE ANALYTIC VALIDITY OF THE 1097 00:37:37,280 --> 00:37:38,600 PIECE. 1098 00:37:38,600 --> 00:37:40,480 DO THE RESULTS TELL US SOMETHING 1099 00:37:40,480 --> 00:37:41,480 ABOUT THE CURRENT OR FUTURE 1100 00:37:41,480 --> 00:37:44,040 HEALTH OF THE PARTICIPANT? 1101 00:37:44,040 --> 00:37:46,440 SO CLINICAL VALIDITY. 1102 00:37:46,440 --> 00:37:47,760 ARE THE RESULTS USEFUL FOR 1103 00:37:47,760 --> 00:37:49,400 CLINICAL OR LIFE DECISIONS? 1104 00:37:49,400 --> 00:37:51,480 AND THESE ARE CLINICAL OR 1105 00:37:51,480 --> 00:37:52,560 PERSONAL UTILITY. 1106 00:37:52,560 --> 00:37:55,680 THESE ARE ALL CORE QUESTIONS. 1107 00:37:55,680 --> 00:37:58,200 AND ALSO, AND I THINK MATT HAD 1108 00:37:58,200 --> 00:37:59,480 HIGHLIGHTED THIS A BIT, AND I 1109 00:37:59,480 --> 00:38:01,560 DON'T THINK WE REALLY UNDERSTAND 1110 00:38:01,560 --> 00:38:03,200 THIS, THERE'S THIS WHOLE NOTION 1111 00:38:03,200 --> 00:38:04,640 OF THE THERAPEUTIC MISCONCEPTION 1112 00:38:04,640 --> 00:38:06,600 WHERE RESEARCH PARTICIPANTS MAY 1113 00:38:06,600 --> 00:38:08,360 BE UNCERTAIN OR A BIT CONFUSED 1114 00:38:08,360 --> 00:38:09,560 ABOUT WHAT THE RESEARCH 1115 00:38:09,560 --> 00:38:10,680 ENTERPRISE IS. 1116 00:38:10,680 --> 00:38:14,360 THE DIFFERENCE BETWEEN CLINICAL 1117 00:38:14,360 --> 00:38:17,120 CARE, WHERE THE PURPOSE VERSUS 1118 00:38:17,120 --> 00:38:19,400 BENEFIT TO YOU AS THE PATIENT OR 1119 00:38:19,400 --> 00:38:20,720 THE PURPOSE OF RESEARCH WHERE 1120 00:38:20,720 --> 00:38:21,800 THE PRIMARY PURPOSE IS TO ANSWER 1121 00:38:21,800 --> 00:38:22,360 A RESEARCH QUESTION. 1122 00:38:22,360 --> 00:38:24,240 THAT'S A BIT ABSTRACT FOR MANY 1123 00:38:24,240 --> 00:38:25,680 PARTICIPANTS, AND IF YOU GET 1124 00:38:25,680 --> 00:38:27,040 THOSE TWO CONFUSED, YOU MAY BE 1125 00:38:27,040 --> 00:38:27,760 PARTICIPATING IN RESEARCH 1126 00:38:27,760 --> 00:38:29,560 BECAUSE YOU THINK IT'S A 1127 00:38:29,560 --> 00:38:30,200 CLINICAL ENTERPRISE. 1128 00:38:30,200 --> 00:38:31,520 AND SO DOES THIS RETURN OF 1129 00:38:31,520 --> 00:38:33,600 RESULT HELP CLOUD THAT IMPORTANT 1130 00:38:33,600 --> 00:38:36,640 DISTINCTION? 1131 00:38:36,640 --> 00:38:41,560 I DON'T THINK WE KNOW THAT YET. 1132 00:38:41,560 --> 00:38:42,880 SO LET TALK A BIT ABOUT THE 1133 00:38:42,880 --> 00:38:43,320 RISKS HERE. 1134 00:38:43,320 --> 00:38:44,680 SO THE COMMUNICATION OF 1135 00:38:44,680 --> 00:38:45,880 INDIVIDUAL RESULTS MAY LEAD 1136 00:38:45,880 --> 00:38:48,920 INDIVIDUALS TO MAKE CRITICAL 1137 00:38:48,920 --> 00:38:49,960 HEALTHCARE OR LIFE DECISIONS 1138 00:38:49,960 --> 00:38:52,280 BASED ON FALSE, MISLEADING OR 1139 00:38:52,280 --> 00:38:52,880 MISINTERPRETED INFORMATION. 1140 00:38:52,880 --> 00:38:53,720 YOU MAY DO HARM. 1141 00:38:53,720 --> 00:38:56,680 THEY MAY DO HARM TO THEMSELVES 1142 00:38:56,680 --> 00:38:57,880 IF THEY HAVEN'T FULLY UNDERSTOOD 1143 00:38:57,880 --> 00:38:59,160 WHAT THE NATURE OF THE 1144 00:38:59,160 --> 00:39:00,480 INFORMATION IS. 1145 00:39:00,480 --> 00:39:02,560 IT MAY CREATE UNNECESSARY 1146 00:39:02,560 --> 00:39:04,440 CONFUSION AND ANXIETY IN 1147 00:39:04,440 --> 00:39:05,520 RESEARCH PARTICIPANTS, 1148 00:39:05,520 --> 00:39:06,600 PARTICULARLY IF THE RESULTS ARE 1149 00:39:06,600 --> 00:39:07,720 UNCERTAIN OR THEY DON'T HAVE A 1150 00:39:07,720 --> 00:39:09,000 CLEAR CHOICE BASED ON THE 1151 00:39:09,000 --> 00:39:10,680 INFORMATION YOU'RE GIVING THEM. 1152 00:39:10,680 --> 00:39:12,640 IT CERTAINLY MAY BURDEN THE 1153 00:39:12,640 --> 00:39:13,520 RESEARCH ENTERPRISE WITH NEW 1154 00:39:13,520 --> 00:39:14,840 COSTS AND COMPLEXITIES. 1155 00:39:14,840 --> 00:39:17,560 AND IT REDUCES THE VOLUME OF 1156 00:39:17,560 --> 00:39:18,800 RESEARCH CONDUCTED BECAUSE 1157 00:39:18,800 --> 00:39:20,080 RESOURCES ARE BEING USED FOR THE 1158 00:39:20,080 --> 00:39:21,880 COMMUNICATION OF RESULTS. 1159 00:39:21,880 --> 00:39:24,040 AND HERE I JUST REMEMBER SO WELL 1160 00:39:24,040 --> 00:39:26,440 WITH THE NATIONAL ACADEMIES 1161 00:39:26,440 --> 00:39:28,320 STUDY, WE HAD A MOTHER OF A 1162 00:39:28,320 --> 00:39:30,760 CHILD WITH MUSCULAR DYSTROPHY. 1163 00:39:30,760 --> 00:39:32,240 AND SHE WAS UPSET BECAUSE SHE 1164 00:39:32,240 --> 00:39:33,480 HAD NOT BEEN GIVEN A SET OF 1165 00:39:33,480 --> 00:39:35,120 RESULTS THAT MIGHT HAVE HELPED 1166 00:39:35,120 --> 00:39:36,520 HER INTERPRET THE CLINICAL 1167 00:39:36,520 --> 00:39:37,400 STATUS OF HER CHILD. 1168 00:39:37,400 --> 00:39:39,400 IT WAS A MUSCLE EVALUATION. 1169 00:39:39,400 --> 00:39:40,800 SO SHE WAS CONCERNED THAT THOSE 1170 00:39:40,800 --> 00:39:42,680 RESULTS HAD NOT BEEN RETURNED. 1171 00:39:42,680 --> 00:39:44,560 AT THE SAME TIME, SHE SAID, YOU 1172 00:39:44,560 --> 00:39:46,640 KNOW, MY MAIN GOAL IN 1173 00:39:46,640 --> 00:39:49,160 PARTICIPATING IN RESEARCH IS TO 1174 00:39:49,160 --> 00:39:51,880 CURE MY CHILD'S CONDITION. 1175 00:39:51,880 --> 00:39:53,080 THAT'S WHAT I CARE ABOUT, IS 1176 00:39:53,080 --> 00:39:54,520 CURING MUSCULAR DYSTROPHY. 1177 00:39:54,520 --> 00:39:55,720 AND IF YOU GUYS ARE SPENDING A 1178 00:39:55,720 --> 00:39:57,400 LOT OF TIME AND MONEY WITH THE 1179 00:39:57,400 --> 00:39:58,680 RETURN OF RESULTS AND THAT'S NOT 1180 00:39:58,680 --> 00:40:00,440 BEING USED TO HELP CURE MY BABY, 1181 00:40:00,440 --> 00:40:03,320 DON'T DO IT. 1182 00:40:03,320 --> 00:40:05,440 MY PRIORITY IS THE RESEARCH, AND 1183 00:40:05,440 --> 00:40:06,600 NOT SO MUCH THE RETURN OF 1184 00:40:06,600 --> 00:40:07,480 RESULTS. 1185 00:40:07,480 --> 00:40:14,120 SO THAT STUCK WITH ME. 1186 00:40:14,120 --> 00:40:16,160 SO WHAT ARE THE BENEFITS? 1187 00:40:16,160 --> 00:40:17,160 PARTICIPANTS MAY RECEIVE 1188 00:40:17,160 --> 00:40:18,360 INFORMATION VALUABLE TO THEIR 1189 00:40:18,360 --> 00:40:19,760 HEALTHCARE AND LIFE DECISIONS. 1190 00:40:19,760 --> 00:40:20,960 WELL, THAT'S PRETTY 1191 00:40:20,960 --> 00:40:22,440 STRAIGHTFORWARD AND IMPORTANT. 1192 00:40:22,440 --> 00:40:23,840 SECONDLY, PARTICIPANTS WILL FEEL 1193 00:40:23,840 --> 00:40:25,800 RESPECTED THROUGH A MORE ROBUST 1194 00:40:25,800 --> 00:40:27,600 PARTNERSHIP IN THE RESEARCH 1195 00:40:27,600 --> 00:40:28,800 INVOLVING RECIPROCITY AND 1196 00:40:28,800 --> 00:40:30,200 TRANSPARENCY. 1197 00:40:30,200 --> 00:40:31,240 THESE ARE A LITTLE HARDER TO 1198 00:40:31,240 --> 00:40:32,400 MEASURE. 1199 00:40:32,400 --> 00:40:33,800 MIGHT THERE BE PRACTICAL 1200 00:40:33,800 --> 00:40:34,920 IMPLICATIONS FOR THIS? 1201 00:40:34,920 --> 00:40:38,720 MIGHT WE SEE A ENHANCED 1202 00:40:38,720 --> 00:40:39,520 RECRUITMENT OR RETENTION IN 1203 00:40:39,520 --> 00:40:39,960 RESEARCH? 1204 00:40:39,960 --> 00:40:41,560 AND WE ALL KNOW THAT RECRUITMENT 1205 00:40:41,560 --> 00:40:45,080 AND RETENTION, I THINK BECOMING 1206 00:40:45,080 --> 00:40:46,640 INCREASINGLY CHALLENGING OVER 1207 00:40:46,640 --> 00:40:46,920 TIME. 1208 00:40:46,920 --> 00:40:48,920 MIGHT THIS HELP PEOPLE DECIDE TO 1209 00:40:48,920 --> 00:40:50,880 PARTICIPATE IN STUDIES? 1210 00:40:50,880 --> 00:40:54,280 AND, MIGHT IT HAVE A MORE 1211 00:40:54,280 --> 00:40:55,840 SIGNIFICANT BACKGROUND EFFECT IN 1212 00:40:55,840 --> 00:40:58,680 ENHANCING TRUST IN THE CLINICAL 1213 00:40:58,680 --> 00:41:00,000 RESEARCH ENTERPRISE? 1214 00:41:00,000 --> 00:41:02,480 EFFICACY FOR CLINICAL RESEARCH 1215 00:41:02,480 --> 00:41:04,040 HINGES CRITICALLY ON THE NOTION 1216 00:41:04,040 --> 00:41:04,600 OF TRUST. 1217 00:41:04,600 --> 00:41:07,240 SO CAN WE BUILD TRUST THROUGH 1218 00:41:07,240 --> 00:41:11,840 THIS PRACTICE. 1219 00:41:11,840 --> 00:41:14,360 SO HERE'S THE COVER OF THE 1220 00:41:14,360 --> 00:41:16,480 REPORT I PARTICIPATED IN IN 1221 00:41:16,480 --> 00:41:17,480 2018. 1222 00:41:17,480 --> 00:41:19,360 ONE OF THE MOST REWARDING 1223 00:41:19,360 --> 00:41:22,400 EXPERIENCES OF MY CAREER. 1224 00:41:22,400 --> 00:41:25,040 AND THIS IS THE GROUP OF FOLKS. 1225 00:41:25,040 --> 00:41:26,280 I WON'T GO THROUGH THIS TERRIFIC 1226 00:41:26,280 --> 00:41:28,240 GROUP OF PEOPLE, BUT JUST 1227 00:41:28,240 --> 00:41:30,320 FASCINATING DISCUSSIONS OVER A 1228 00:41:30,320 --> 00:41:31,120 ONE-YEAR PERIOD OF TIME TO COME 1229 00:41:31,120 --> 00:41:36,720 FORWARD WITH THIS REPORT. 1230 00:41:36,720 --> 00:41:37,800 SO I'M GOING TO HIGHLIGHT A 1231 00:41:37,800 --> 00:41:42,600 COUPLE OF OUTCOMES FROM THIS 1232 00:41:42,600 --> 00:41:44,800 CONSENSUS COMMITTEE. 1233 00:41:44,800 --> 00:41:46,360 SO WHAT'S THE BASIC PROPOSED 1234 00:41:46,360 --> 00:41:48,200 STANDARD THAT WE WERE TRYING TO 1235 00:41:48,200 --> 00:41:48,440 SUPPORT? 1236 00:41:48,440 --> 00:41:50,320 THAT INVESTIGATORS AND THE IRB 1237 00:41:50,320 --> 00:41:51,320 SHOULD CONSIDER AND PLAN WHETHER 1238 00:41:51,320 --> 00:41:53,920 AND HOW TO RETURN RESULTS, 1239 00:41:53,920 --> 00:41:55,440 PRIMARY RESULTS OR UNANTICIPATED 1240 00:41:55,440 --> 00:41:58,320 RESULTS, ON A 1241 00:41:58,320 --> 00:41:58,880 PROTOCOL-BY-PROTOCOL BASIS. 1242 00:41:58,880 --> 00:42:00,200 SO A NUMBER OF OTHER 1243 00:42:00,200 --> 00:42:01,080 INVESTIGATORS WHO HAVE WORKED IN 1244 00:42:01,080 --> 00:42:02,480 THIS AREA HAVE FOCUSED MORE ON 1245 00:42:02,480 --> 00:42:04,040 OKAY, WHAT ARE THE CRITERIA THAT 1246 00:42:04,040 --> 00:42:08,480 HELP US DECIDE WHETHER OR NOT TO 1247 00:42:08,480 --> 00:42:10,480 RETURN INDIVIDUAL RESULTS. 1248 00:42:10,480 --> 00:42:12,560 OURS WAS A LITTLE BIT MORE OF A 1249 00:42:12,560 --> 00:42:13,320 PROCESS-BASED SET OF 1250 00:42:13,320 --> 00:42:14,360 RECOMMENDATIONS. 1251 00:42:14,360 --> 00:42:15,960 NOT TO SAY WHAT OUGHT TO BE 1252 00:42:15,960 --> 00:42:17,480 RETURNED, BUT HOW YOU SHOULD 1253 00:42:17,480 --> 00:42:19,560 ESTABLISH A PROCESS BY WHICH 1254 00:42:19,560 --> 00:42:21,560 THOSE DECISIONS ARE MADE. 1255 00:42:21,560 --> 00:42:23,200 UNDERSTANDING THAT THE 1256 00:42:23,200 --> 00:42:25,040 COMPLEXITIES OF EACH STUDY NEED 1257 00:42:25,040 --> 00:42:26,600 TO BE CONSIDERED IN ORDER TO 1258 00:42:26,600 --> 00:42:29,880 MAKE A 1259 00:42:29,880 --> 00:42:30,440 PROTOCOL-BY-PROTOCOL-BASED 1260 00:42:30,440 --> 00:42:30,680 DECISION. 1261 00:42:30,680 --> 00:42:31,560 SO IT WAS MORE OF A PROCESS 1262 00:42:31,560 --> 00:42:32,120 APPROACH TO THIS. 1263 00:42:32,120 --> 00:42:35,160 SO I THINK THOSE TWO DOMAINS ARE 1264 00:42:35,160 --> 00:42:36,080 A NICE MARRIAGE OF 1265 00:42:36,080 --> 00:42:38,280 CONSIDERATIONS. 1266 00:42:38,280 --> 00:42:39,560 NOW, IF RESULTS WILL BE OFFERED 1267 00:42:39,560 --> 00:42:41,320 IN SOME OR ALL CIRCUMSTANCES, 1268 00:42:41,320 --> 00:42:42,000 CONSENT OF THE PARTICIPANTS 1269 00:42:42,000 --> 00:42:43,600 SHOULD BE OBTAINED. 1270 00:42:43,600 --> 00:42:44,920 AGAIN, PRETTY BOILERPLATE STUFF. 1271 00:42:44,920 --> 00:42:46,120 AND OBVIOUSLY THIS IS EXACTLY 1272 00:42:46,120 --> 00:42:49,880 WHAT WE'RE DOING WITH RESPECT TO 1273 00:42:49,880 --> 00:42:53,280 THE ECHO STUDY, IS THINKING ON A 1274 00:42:53,280 --> 00:42:54,240 PROTOCOL-BY-PROTOCOL BASIS OR 1275 00:42:54,240 --> 00:42:56,200 EVEN RESULT-BY-RESULT BASIS 1276 00:42:56,200 --> 00:43:02,240 ABOUT WHAT OUGHT TO BE RETURNED. 1277 00:43:02,240 --> 00:43:03,800 SO AGAIN A COUPLE OF BASIC 1278 00:43:03,800 --> 00:43:07,520 RECOMMENDATIONS THAT I THINK ARE 1279 00:43:07,520 --> 00:43:09,040 LARGELY UNASSAILABLE AND AGAIN 1280 00:43:09,040 --> 00:43:10,360 REFLECTED SO NICELY IN THE ECHO 1281 00:43:10,360 --> 00:43:12,280 PROCESS HERE. 1282 00:43:12,280 --> 00:43:14,240 YOU REALLY WANT PARTICIPANT AND 1283 00:43:14,240 --> 00:43:15,000 COMMUNITY ENGAGEMENT. 1284 00:43:15,000 --> 00:43:17,320 HAVING THE INVESTIGATORS OR 1285 00:43:17,320 --> 00:43:18,000 CLINICIANS' POINT OF VIEW ON 1286 00:43:18,000 --> 00:43:20,080 WHAT OUGHT TO BE RETURNED IS 1287 00:43:20,080 --> 00:43:20,400 INSUFFICIENT. 1288 00:43:20,400 --> 00:43:21,600 YOU REALLY NEED TO ENGAGE WITH 1289 00:43:21,600 --> 00:43:22,600 THE ACTUAL PEOPLE WHO ARE 1290 00:43:22,600 --> 00:43:23,800 PARTICIPATING IN YOUR STUDY TO 1291 00:43:23,800 --> 00:43:25,560 HELP GUIDE YOU ON WHAT SORTS OF 1292 00:43:25,560 --> 00:43:26,880 INFORMATION PEOPLE WANT, AND HOW 1293 00:43:26,880 --> 00:43:28,760 IT IS THAT YOU CAN BEST CONVEY 1294 00:43:28,760 --> 00:43:30,000 THAT INFORMATION IN A MEANINGFUL 1295 00:43:30,000 --> 00:43:32,800 AND EFFECTIVE WAY. 1296 00:43:32,800 --> 00:43:34,000 SO YOU SHOULD SEEK INFORMATION 1297 00:43:34,000 --> 00:43:36,320 ABOUT PARTICIPANT VALUES, 1298 00:43:36,320 --> 00:43:37,320 RESEARCH INSTITUTIONS, AND WE 1299 00:43:37,320 --> 00:43:38,840 TRIED WITH EACH OF THE 1300 00:43:38,840 --> 00:43:39,840 RECOMMENDATIONS TO SORT OF GO 1301 00:43:39,840 --> 00:43:41,240 THROUGH THE DIFFERENT INTEREST 1302 00:43:41,240 --> 00:43:44,120 GROUPS AND HELPING EACH OF THEM 1303 00:43:44,120 --> 00:43:45,480 DECIDE WHAT THEIR ROLE WOULD BE. 1304 00:43:45,480 --> 00:43:48,320 SO RESEARCH INSTITUTIONS AND 1305 00:43:48,320 --> 00:43:49,600 SPONSORS SHOULD FACILITATE 1306 00:43:49,600 --> 00:43:50,720 INVESTIGATOR ACCESS TO RELEVANT 1307 00:43:50,720 --> 00:43:51,720 COMMUNITY AND PARTICIPANT 1308 00:43:51,720 --> 00:43:52,160 GROUPS. 1309 00:43:52,160 --> 00:43:54,080 EACH INVESTIGATOR MAY NOT HAVE 1310 00:43:54,080 --> 00:43:55,320 THE KNOWLEDGE, BACKGROUND, 1311 00:43:55,320 --> 00:43:56,680 ABILITY TO SIMPLY ENGAGE WITH 1312 00:43:56,680 --> 00:43:57,160 THE COMMUNITY. 1313 00:43:57,160 --> 00:43:58,000 WHAT DOES THAT MEAN? 1314 00:43:58,000 --> 00:44:00,400 HOW DO YOU DO THAT IN THE RIGHT 1315 00:44:00,400 --> 00:44:00,960 WAY? 1316 00:44:00,960 --> 00:44:02,720 SO INSTITUTIONS OUGHT TO BE ABLE 1317 00:44:02,720 --> 00:44:04,600 TO FACILITATE THAT AND THEN 1318 00:44:04,600 --> 00:44:05,800 SPONSORS LIKE THE NIH SHOULD 1319 00:44:05,800 --> 00:44:07,320 ENGAGE COMMUNITY AND PARTICIPANT 1320 00:44:07,320 --> 00:44:07,880 REPRESENTATIVES IN THE 1321 00:44:07,880 --> 00:44:09,520 DEVELOPMENT OF POLICY AND 1322 00:44:09,520 --> 00:44:10,480 GUIDANCE IN THIS PARTICULAR 1323 00:44:10,480 --> 00:44:11,600 AREA. 1324 00:44:11,600 --> 00:44:16,800 AGAIN, EXACTLY AS YOU'RE DOING. 1325 00:44:16,800 --> 00:44:18,880 SO HERE'S OUR GENERAL FRAMEWORK. 1326 00:44:18,880 --> 00:44:20,080 I THINK FOLKS CAN SEE THAT 1327 00:44:20,080 --> 00:44:22,280 PRETTY WELL. 1328 00:44:22,280 --> 00:44:24,040 WITH THE NOTION THAT 1329 00:44:24,040 --> 00:44:25,320 JUSTIFICATION FOR RETURN BECOMES 1330 00:44:25,320 --> 00:44:26,640 STRONGER AS THE POTENTIAL VALUE 1331 00:44:26,640 --> 00:44:28,320 OF THE RESULTS TO PARTICIPANTS 1332 00:44:28,320 --> 00:44:30,840 AND THE FEASIBILITY OF RETURN 1333 00:44:30,840 --> 00:44:32,280 INCREASES. 1334 00:44:32,280 --> 00:44:34,120 SO IF YOU'VE GOT LOW FEASIBILITY 1335 00:44:34,120 --> 00:44:37,000 AND LOW VALUE, WEAK 1336 00:44:37,000 --> 00:44:38,120 JUSTIFICATION, HIGH FEASIBILITY, 1337 00:44:38,120 --> 00:44:39,520 STRONG VALUE, STRONG 1338 00:44:39,520 --> 00:44:40,600 JUSTIFICATION AND OF COURSE 1339 00:44:40,600 --> 00:44:41,800 CONTROVERSIAL AREAS ARE GOING TO 1340 00:44:41,800 --> 00:44:43,640 BE IN THOSE CORNERS WHERE YOU 1341 00:44:43,640 --> 00:44:45,240 HAVE LOW FEASIBILITY BUT HIGH 1342 00:44:45,240 --> 00:44:46,880 VALUE OR POTENTIALLY HIGH 1343 00:44:46,880 --> 00:44:48,080 FEASIBILITY BUT LOW VALUE. 1344 00:44:48,080 --> 00:44:50,440 AND THAT'S WHERE THE DEBATES ARE 1345 00:44:50,440 --> 00:44:54,680 GOING TO BE MORE DIFFICULT. 1346 00:44:54,680 --> 00:44:56,520 I'M GOING TO CRITIQUE THIS FAME 1347 00:44:56,520 --> 00:45:00,840 WORK HERE IN AFRAMEWORK FOR YOUD 1348 00:45:00,840 --> 00:45:01,040 HERE. 1349 00:45:01,040 --> 00:45:02,080 SO WHAT ARE SOME OF THE 1350 00:45:02,080 --> 00:45:03,040 CONTROVERSIES AND UNCERTAINTIES 1351 00:45:03,040 --> 00:45:04,800 FROM MY PERSPECTIVE? 1352 00:45:04,800 --> 00:45:07,360 FIRST IS THE NOTION OF 1353 00:45:07,360 --> 00:45:09,160 FEASIBILITY. 1354 00:45:09,160 --> 00:45:10,720 HOW MUCH BURDEN ON THE RESEARCH 1355 00:45:10,720 --> 00:45:11,760 ENTERPRISE IS ACCEPTABLE FOR 1356 00:45:11,760 --> 00:45:14,000 THIS GOAL? 1357 00:45:14,000 --> 00:45:16,640 AGAIN, UNDERSTANDING THAT THIS 1358 00:45:16,640 --> 00:45:20,680 IS HARD, REQUIRES A LOT OF MAN 1359 00:45:20,680 --> 00:45:24,680 WORK, RESOURCES, DEVELOP 1360 00:45:24,680 --> 00:45:30,560 COMMUNICATION STRATEGY, ARE THEY 1361 00:45:30,560 --> 00:45:32,000 EFFECTIVE OR NOT. 1362 00:45:32,000 --> 00:45:33,320 RETURN OF RESULT REQUIRES 1363 00:45:33,320 --> 00:45:34,880 MAINTAINING IDENTITIES AND 1364 00:45:34,880 --> 00:45:35,400 CONTACT INFORMATION. 1365 00:45:35,400 --> 00:45:37,600 A LOT OF THE RESEARCH IN 1366 00:45:37,600 --> 00:45:38,360 GENETICS, FOR EXAMPLE, HAS BEEN 1367 00:45:38,360 --> 00:45:40,240 DONE WITH BIOBANKS WHERE PEOPLE 1368 00:45:40,240 --> 00:45:42,120 HAVE BEEN EITHER DE-IDENTIFIED 1369 00:45:42,120 --> 00:45:44,400 OR ANONYMIZED, SO THAT'S A WAY 1370 00:45:44,400 --> 00:45:47,200 OF PROTECTING THEIR IDENTITIES 1371 00:45:47,200 --> 00:45:50,120 AND, THEREFORE, PROTECTING THEIR 1372 00:45:50,120 --> 00:45:52,200 PRIVACY IN THAT FASHION. 1373 00:45:52,200 --> 00:45:54,400 SO IS IT A RISK TO PRIVACY TO 1374 00:45:54,400 --> 00:45:55,440 MAINTAIN CONTACT INFORMATION FOR 1375 00:45:55,440 --> 00:45:56,880 THE PURPOSES OF RETURNING 1376 00:45:56,880 --> 00:45:59,200 RESULTS? 1377 00:45:59,200 --> 00:46:03,800 PROJECTS MAY END BEFORE THE 1378 00:46:03,800 --> 00:46:05,720 MEANING OF THE RESULTS ARE 1379 00:46:05,720 --> 00:46:06,160 CLEAR. 1380 00:46:06,160 --> 00:46:07,320 ONE OF THE THINGS IN OUR 1381 00:46:07,320 --> 00:46:08,680 CONSENSUS STATEMENT CONSISTENT 1382 00:46:08,680 --> 00:46:10,160 WITH MANY OTHER GROUPS IS THAT 1383 00:46:10,160 --> 00:46:10,880 YOUR OBLIGATION TO RETURN 1384 00:46:10,880 --> 00:46:12,480 RESULTS PROBABLY ENDS WITH THE 1385 00:46:12,480 --> 00:46:13,960 END OF YOUR PROJECT. 1386 00:46:13,960 --> 00:46:15,840 AND THEN IT'S NOT REASONABLE TO 1387 00:46:15,840 --> 00:46:17,600 TRY TO MAINTAIN SOME SORT OF 1388 00:46:17,600 --> 00:46:19,040 FUNDING AND LINE AND SET OF 1389 00:46:19,040 --> 00:46:20,360 ACTIVITIES TO RETURN RESULTS 1390 00:46:20,360 --> 00:46:22,240 ONCE THE PROJECT IS OVER. 1391 00:46:22,240 --> 00:46:23,680 WELL, PROJECT MAY WELL BE OVER 1392 00:46:23,680 --> 00:46:25,320 FROM A FUNDING STANDPOINT BEFORE 1393 00:46:25,320 --> 00:46:27,280 YOU REALLY UNDERSTAND WHAT THE 1394 00:46:27,280 --> 00:46:29,800 RESULTS ARE OR BEFORE THEY'VE 1395 00:46:29,800 --> 00:46:31,320 BEEN CONFIRMED BY SUBSEQUENT 1396 00:46:31,320 --> 00:46:37,160 RESEARCH. 1397 00:46:37,160 --> 00:46:39,560 AND HOW ABOUT THE VALUES TO 1398 00:46:39,560 --> 00:46:41,760 PARTICIPANTS, THAT OTHER AXIS? 1399 00:46:41,760 --> 00:46:43,200 THE DIAGRAM DOESN'T INCLUDE 1400 00:46:43,200 --> 00:46:44,280 DISVALUE OR HARM TO 1401 00:46:44,280 --> 00:46:44,600 PARTICIPANTS. 1402 00:46:44,600 --> 00:46:45,880 YOU NOTICE ON THE LEFT SIDE THAT 1403 00:46:45,880 --> 00:46:47,280 VALUE GOES FROM HIGH TO ZERO. 1404 00:46:47,280 --> 00:46:48,520 WELL, IT PROBABLY -- WE SHOULD 1405 00:46:48,520 --> 00:46:50,720 HAVE PROBABLY EXTENDED THAT AXIS 1406 00:46:50,720 --> 00:46:51,720 IN THE OTHER DIRECTION TO SAY 1407 00:46:51,720 --> 00:46:53,640 THERE MAY BE CIRCUMSTANCES WHERE 1408 00:46:53,640 --> 00:46:57,640 PEOPLE GET HARMED BY THIS. 1409 00:46:57,640 --> 00:46:59,720 AND SO HOW DO YOU THEN ASSESS 1410 00:46:59,720 --> 00:47:00,440 THAT? 1411 00:47:00,440 --> 00:47:04,720 I DON'T THINK WE KNOW YET. 1412 00:47:04,720 --> 00:47:06,080 EARLY IN THE L.C. FIELD, WE'RE 1413 00:47:06,080 --> 00:47:08,360 VERY CONCERNED ABOUT PREDICTIVE 1414 00:47:08,360 --> 00:47:09,360 GENETIC INFORMATION AND THE 1415 00:47:09,360 --> 00:47:10,120 NEGATIVE IMPACT ON PEOPLE. 1416 00:47:10,120 --> 00:47:12,120 I THINK WHAT THAT RESEARCH 1417 00:47:12,120 --> 00:47:14,320 SHOWED WAS THAT WE OVERESTIMATED 1418 00:47:14,320 --> 00:47:15,280 THE IMPACT OF CONCERNING 1419 00:47:15,280 --> 00:47:15,920 INFORMATION. 1420 00:47:15,920 --> 00:47:17,520 NOT THAT IT WASN'T IMPACTFUL FOR 1421 00:47:17,520 --> 00:47:19,280 PEOPLE, BUT FROM A PSYCHOLOGICAL 1422 00:47:19,280 --> 00:47:20,760 STANDPOINT, IT WASN'T HARMFUL. 1423 00:47:20,760 --> 00:47:22,120 AND IT'S UNCERTAIN INFORMATION 1424 00:47:22,120 --> 00:47:24,200 THAT'S PROBABLY MORE 1425 00:47:24,200 --> 00:47:25,520 PROBLEMATIC, WHEN PEOPLE CAN'T 1426 00:47:25,520 --> 00:47:26,400 GRAPPLE WITH INFORMATION THAT 1427 00:47:26,400 --> 00:47:30,240 THEY CAN'T REALLY UNDERSTAND. 1428 00:47:30,240 --> 00:47:32,120 SO IN THIS PARTICULAR CONTEXT, I 1429 00:47:32,120 --> 00:47:33,520 THINK ANTICIPATING INFORMATION 1430 00:47:33,520 --> 00:47:34,760 ABOUT UNCERTAIN ENVIRONMENTAL 1431 00:47:34,760 --> 00:47:36,080 HEALTH RISKS TO A FETUS OR CHILD 1432 00:47:36,080 --> 00:47:39,080 COULD BE HIGHLY IMPACTFUL FOR 1433 00:47:39,080 --> 00:47:42,960 PREGNANT WOMEN AND COUPLES. 1434 00:47:42,960 --> 00:47:44,880 CLINICAL UTILITY IS A STRONG 1435 00:47:44,880 --> 00:47:46,160 VALUE BUT SHOULD IT BE BASED ON 1436 00:47:46,160 --> 00:47:47,640 WHETHER PARTICIPANTS CAN USE 1437 00:47:47,640 --> 00:47:51,000 INFORMATION OR DO USE IT? 1438 00:47:51,000 --> 00:47:55,400 WE NEED -- AND LASTLY PERSONAL 1439 00:47:55,400 --> 00:47:56,240 UTILITY, HOW TO DETERMINE WHERE 1440 00:47:56,240 --> 00:47:58,160 THESE TYPES OF USES FALL ON THE 1441 00:47:58,160 --> 00:47:59,240 VALUE SPECTRUM. 1442 00:47:59,240 --> 00:48:00,680 PEOPLE MAY FIND, YEAH, I WANT TO 1443 00:48:00,680 --> 00:48:02,200 KNOW THAT INFORMATION, IT'S GOOD 1444 00:48:02,200 --> 00:48:03,560 FOR ME TO KNOW, BUT THEY'RE NOT 1445 00:48:03,560 --> 00:48:05,000 GOING TO USE IT FROM A CLINICAL 1446 00:48:05,000 --> 00:48:10,320 STANDPOINT. 1447 00:48:10,320 --> 00:48:11,000 ALL RIGHT. 1448 00:48:11,000 --> 00:48:11,440 ALMOST ON TIME. 1449 00:48:11,440 --> 00:48:12,080 SO THANK YOU. 1450 00:48:12,080 --> 00:48:19,920 AND I GUESS QUESTIONS NOW. 1451 00:48:19,920 --> 00:48:21,200 >>PLEASE RAISE YOUR HAND IF YOU 1452 00:48:21,200 --> 00:48:24,160 HAVE A QUESTION. 1453 00:48:24,160 --> 00:48:25,360 >>THANK YOU. 1454 00:48:25,360 --> 00:48:28,000 THAT WAS GREAT TO GET AN INSIGHT 1455 00:48:28,000 --> 00:48:30,560 INTO THAT PROCESS. 1456 00:48:30,560 --> 00:48:32,600 ONE OF THE THINGS THAT I THINK 1457 00:48:32,600 --> 00:48:37,200 WE OFTEN DO IS WE MAKE 1458 00:48:37,200 --> 00:48:37,960 PARTICIPANTS SEPARATE FROM WHO 1459 00:48:37,960 --> 00:48:41,040 WE ARE, AND WE DON'T HAVE THAT 1460 00:48:41,040 --> 00:48:42,240 SENSE THAT PARTICIPANTS COME 1461 00:48:42,240 --> 00:48:43,600 FROM COMMUNITIES AND REPRESENT 1462 00:48:43,600 --> 00:48:45,120 THE SAME VALUES THAT A LOT OF 1463 00:48:45,120 --> 00:48:48,440 THE RESEARCHERS HOLD AS WELL, 1464 00:48:48,440 --> 00:48:50,280 AND PART OF THAT WHOLE TRAINING 1465 00:48:50,280 --> 00:48:52,600 OF THE RESEARCH AND CLINICAL 1466 00:48:52,600 --> 00:48:54,920 ENTERPRISE IS ALSO THIS CONCEPT 1467 00:48:54,920 --> 00:48:57,320 THAT BECAUSE PARTICIPANTS ARE 1468 00:48:57,320 --> 00:48:58,760 DIFFERENT, THEY CAN'T POSSIBLY 1469 00:48:58,760 --> 00:49:00,600 DEAL WITH UNCERTAINTY. 1470 00:49:00,600 --> 00:49:02,560 AND THAT'S DRILLED IN ALL THE 1471 00:49:02,560 --> 00:49:04,400 WAY THROUGH, AND SO WHEN YOU GET 1472 00:49:04,400 --> 00:49:05,480 TO THE POINT WHERE THERE'S 1473 00:49:05,480 --> 00:49:06,480 UNCERTAINTY, THEN THAT BECOMES 1474 00:49:06,480 --> 00:49:08,800 THE WALL. 1475 00:49:08,800 --> 00:49:11,200 AND I THINK EXPERIENTIALLY, WHAT 1476 00:49:11,200 --> 00:49:12,640 I'VE SEEN, ANYWAY, IS THAT IF 1477 00:49:12,640 --> 00:49:14,000 YOU'RE OPEN ALL THE WAY THROUGH, 1478 00:49:14,000 --> 00:49:17,120 PEOPLE DO UNDERSTAND 1479 00:49:17,120 --> 00:49:18,000 UNCERTAINTY. 1480 00:49:18,000 --> 00:49:19,000 AND THEY KNOW THAT YOU DON'T 1481 00:49:19,000 --> 00:49:20,680 ALWAYS KNOW THE RESULTS, BUT AT 1482 00:49:20,680 --> 00:49:23,000 LEAST THEY KNOW TO KEEP WATCHING 1483 00:49:23,000 --> 00:49:24,800 IN THE FUTURE IF A STUDY ENDS. 1484 00:49:24,800 --> 00:49:27,320 SO I JUST WONDERED IF THAT 1485 00:49:27,320 --> 00:49:29,120 DISCUSSION HAPPENED IN THE 1486 00:49:29,120 --> 00:49:30,360 PROCESS AND IF YOU COULD COMMENT 1487 00:49:30,360 --> 00:49:31,080 ON THAT. 1488 00:49:31,080 --> 00:49:32,480 >>I THINK THAT'S AN EXCELLENT 1489 00:49:32,480 --> 00:49:32,680 POINT. 1490 00:49:32,680 --> 00:49:33,840 I WOULD DEFER TO OTHERS WHO 1491 00:49:33,840 --> 00:49:37,360 PROBABLY HAVE MORE EXPERIENCE 1492 00:49:37,360 --> 00:49:38,600 ABOUT THOSE KINDS OF DISCUSSIONS 1493 00:49:38,600 --> 00:49:40,240 BUT I THINK THAT'S AN EXCELLENT 1494 00:49:40,240 --> 00:49:40,640 POINT. 1495 00:49:40,640 --> 00:49:42,840 AND IF YOU MAKE IT A PROCESS TO 1496 00:49:42,840 --> 00:49:45,840 ENGAGE PEOPLE EARLY AND 1497 00:49:45,840 --> 00:49:46,920 HIGHLIGHT THE UNCERTAIN NATURE 1498 00:49:46,920 --> 00:49:48,640 OF THE RESEARCH ENTERPRISE AND 1499 00:49:48,640 --> 00:49:50,680 THE RESULTS, THEN THAT PROBABLY 1500 00:49:50,680 --> 00:49:54,600 HELPS SUPPORT PEOPLE TO HELP 1501 00:49:54,600 --> 00:49:56,120 THEM EFFECTIVELY UNDERSTAND AND 1502 00:49:56,120 --> 00:49:58,120 ENGAGE THROUGH THE WHOLE 1503 00:49:58,120 --> 00:49:58,480 PROCESS. 1504 00:49:58,480 --> 00:49:59,760 I'LL ALSO SAY FROM MY 1505 00:49:59,760 --> 00:50:00,520 PERSPECTIVE, PART OF THE 1506 00:50:00,520 --> 00:50:02,760 CHALLENGE, THIS IS PART OF OUR 1507 00:50:02,760 --> 00:50:04,640 EARLIER RESEARCH AROUND NEGATIVE 1508 00:50:04,640 --> 00:50:07,720 RESULTS FROM GENETIC -- 1509 00:50:07,720 --> 00:50:09,000 PREDICTIVE GENETIC TESTING 1510 00:50:09,000 --> 00:50:11,240 STUFF, I THINK WE FIND THAT FOR 1511 00:50:11,240 --> 00:50:12,880 MANY CIRCUMSTANCES, THE MAJORITY 1512 00:50:12,880 --> 00:50:14,840 OF PEOPLE DO JUST FINE. 1513 00:50:14,840 --> 00:50:16,440 BUT THEN THERE'S THIS SUBSET OF 1514 00:50:16,440 --> 00:50:17,880 FOLKS WHO ARE MORE SENSITIVE FOR 1515 00:50:17,880 --> 00:50:19,840 A VARIETY OF REASONS, MORE 1516 00:50:19,840 --> 00:50:21,240 SENSITIVE PSYCHOLOGICALLY, FROM 1517 00:50:21,240 --> 00:50:24,600 THEIR LIFE CIRCUMSTANCES, ET 1518 00:50:24,600 --> 00:50:25,680 CETERA, AND THAT THOSE MAY BE 1519 00:50:25,680 --> 00:50:29,280 THE PEOPLE WHO, SMALL IN NUMBER 1520 00:50:29,280 --> 00:50:30,400 BUT YET YOU'RE GOING TO HAVE 1521 00:50:30,400 --> 00:50:32,320 MUCH MORE IMPACT BECAUSE OF THE 1522 00:50:32,320 --> 00:50:34,120 NATURE -- IF YOU CAN PREDICT 1523 00:50:34,120 --> 00:50:35,680 THAT, THEN YOU CAN GO IN WITH 1524 00:50:35,680 --> 00:50:36,920 SOME HELP BUT YOU MAY NOT BE 1525 00:50:36,920 --> 00:50:38,160 ABLE TO PREDICT THAT, SO PART OF 1526 00:50:38,160 --> 00:50:39,760 THE ETHICAL CHALLENGE IN THIS 1527 00:50:39,760 --> 00:50:41,520 DOMAIN IS NOT NECESSARILY TO SAY 1528 00:50:41,520 --> 00:50:43,200 WHAT'S THE AVERAGE RESEARCH 1529 00:50:43,200 --> 00:50:45,320 PARTICIPANT WANT, BUT ARE THERE 1530 00:50:45,320 --> 00:50:46,520 SOME GROUPS THERE THAT FOR 1531 00:50:46,520 --> 00:50:47,280 WHATEVER REASON ARE MORE 1532 00:50:47,280 --> 00:50:48,600 SENSITIVE AND WE NEED TO FOCUS 1533 00:50:48,600 --> 00:50:52,080 OUR EFFORTS ON TO MAKE SURE THAT 1534 00:50:52,080 --> 00:50:55,120 THAT GROUP DOES WELL IN THE 1535 00:50:55,120 --> 00:51:03,320 PROCESS, IN ADDITION. 1536 00:51:03,320 --> 00:51:05,200 >>IS THERE A THRESHOLD TO THE 1537 00:51:05,200 --> 00:51:06,600 INFORMATION YOU'RE WILLING TO 1538 00:51:06,600 --> 00:51:07,680 DISCLOSE? 1539 00:51:07,680 --> 00:51:09,400 >>ANY THRESHOLD? 1540 00:51:09,400 --> 00:51:09,960 >>YES. 1541 00:51:09,960 --> 00:51:11,240 >>I THINK PROBABLY THE 1542 00:51:11,240 --> 00:51:12,680 THRESHOLD I WOULD POINT TO IS 1543 00:51:12,680 --> 00:51:15,520 JUST THE SORT OF THING THAT 1544 00:51:15,520 --> 00:51:17,800 COMES OUT OF THAT RUBRIC, WHICH 1545 00:51:17,800 --> 00:51:24,640 IS TO SAY INFORMATION THAT HAS 1546 00:51:24,640 --> 00:51:30,440 NO PERCEIVED VALUE FOR PEOPLE IS 1547 00:51:30,440 --> 00:51:31,600 PROBABLY A THRESHOLD. 1548 00:51:31,600 --> 00:51:33,760 NOW, MAYBE THAT'S ALL A SLIDING 1549 00:51:33,760 --> 00:51:36,400 SCALE AND THERE'S NO REAL BRIGHT 1550 00:51:36,400 --> 00:51:38,520 LINES THERE, BUT IF YOU REALLY 1551 00:51:38,520 --> 00:51:40,120 HAVE INFORMATION THAT NOBODY CAN 1552 00:51:40,120 --> 00:51:46,520 INTERPRET AND HAS NO MEANING TO 1553 00:51:46,520 --> 00:51:47,720 PEOPLE, THEN THAT'S PROBABLY 1554 00:51:47,720 --> 00:51:48,760 FALLING BELOW A THRESHOLD THAT I 1555 00:51:48,760 --> 00:51:51,680 WOULD SAY I WOULDN'T SPEND TIME, 1556 00:51:51,680 --> 00:51:54,520 RESOURCES AND EFFORT TO TRY TO 1557 00:51:54,520 --> 00:51:54,840 COMMUNICATE. 1558 00:51:54,840 --> 00:51:56,440 AND THERE MAY WELL BE THINGS IN 1559 00:51:56,440 --> 00:51:58,200 THE ENVIRONMENTAL HEALTH FIELD, 1560 00:51:58,200 --> 00:52:00,640 FOR EXAMPLE, THAT YOU'RE 1561 00:52:00,640 --> 00:52:01,240 COLLECTING DATA BECAUSE IT'S 1562 00:52:01,240 --> 00:52:03,400 GOING TO BE 1563 00:52:03,400 --> 00:52:04,880 HYPOTHESIS-GENERATING DOWN THE 1564 00:52:04,880 --> 00:52:06,960 LINE, AND WHAT'S THE MICROBIOME 1565 00:52:06,960 --> 00:52:07,960 OF THE GUT LOOK LIKE? 1566 00:52:07,960 --> 00:52:08,800 WELL, IS THAT SOMETHING THAT 1567 00:52:08,800 --> 00:52:09,960 PEOPLE CAN INTERPRET AND NEED TO 1568 00:52:09,960 --> 00:52:10,400 KNOW? 1569 00:52:10,400 --> 00:52:13,040 YOU KNOW, MAYBE NOT. 1570 00:52:13,040 --> 00:52:14,200 BUT MAYBE A SCIENTIST DOWN THE 1571 00:52:14,200 --> 00:52:15,720 ROAD FROM PULL FROM THAT DATA 1572 00:52:15,720 --> 00:52:17,240 AND DRAW SOME TENTATIVE 1573 00:52:17,240 --> 00:52:18,080 ASSOCIATION CONCLUSIONS THAT 1574 00:52:18,080 --> 00:52:23,360 WOULD BE USEFUL FROM A RYE A REH 1575 00:52:23,360 --> 00:52:24,120 STANDPOINT BUT HAVE NO MEANING 1576 00:52:24,120 --> 00:52:25,160 TO A PARTICULAR INVESTIGATOR. 1577 00:52:25,160 --> 00:52:26,400 SO JUST KIND OF PULLING OUT OF 1578 00:52:26,400 --> 00:52:27,720 MY HAT SOMETHING THAT I THINK 1579 00:52:27,720 --> 00:52:29,040 MIGHT FALL BELOW THAT SORT OF 1580 00:52:29,040 --> 00:52:29,800 THRESHOLD. 1581 00:52:29,800 --> 00:52:33,040 BUT IN GENERAL, I THINK ANYTHING 1582 00:52:33,040 --> 00:52:34,040 THAT'S CONSIDERED A RESULT OUGHT 1583 00:52:34,040 --> 00:52:37,480 TO BE CONSIDERED FOR RETURN, AND 1584 00:52:37,480 --> 00:52:39,680 THEN NO THRESHOLD IN THAT 1585 00:52:39,680 --> 00:52:42,280 REGARD. 1586 00:52:42,280 --> 00:52:45,120 >>ANOTHER QUELL? 1587 00:52:45,120 --> 00:52:45,360 QUESTION? 1588 00:52:45,360 --> 00:52:45,880 >>YES. 1589 00:52:45,880 --> 00:52:47,440 THERE'S A QUESTION FROM THE ZOOM 1590 00:52:47,440 --> 00:52:51,200 AUDIENCE. 1591 00:52:51,200 --> 00:52:52,400 UNDER WHAT CIRCUMSTANCES DO YOU 1592 00:52:52,400 --> 00:52:55,680 NOT RETURN RESULTS TO INDIVIDUAL 1593 00:52:55,680 --> 00:52:56,760 PARTICIPANTS? 1594 00:52:56,760 --> 00:52:58,880 SEEMS IDENTICAL TO FULL 1595 00:52:58,880 --> 00:52:59,880 DISCLOSURE, PARTICIPANTS VERY 1596 00:52:59,880 --> 00:53:01,800 INDIVIDUAL DATA, I DON'T THINK 1597 00:53:01,800 --> 00:53:02,600 THE RESEARCHERS SHOULD DECIDE 1598 00:53:02,600 --> 00:53:03,800 ABOUT THE VALUE OF THE RETURNED 1599 00:53:03,800 --> 00:53:04,280 DATA. 1600 00:53:04,280 --> 00:53:06,160 THEY SHOULD RETURN RESULTS, 1601 00:53:06,160 --> 00:53:07,480 OBSERVING CONFIDENTIALITY OF THE 1602 00:53:07,480 --> 00:53:10,680 PARTICIPANT. 1603 00:53:10,680 --> 00:53:12,240 >>I THINK THAT'S GOING TO BE 1604 00:53:12,240 --> 00:53:13,680 THE WHOLE DISCUSSION WE HAVE 1605 00:53:13,680 --> 00:53:14,960 OVER THE NEXT COUPLE DAYS AND 1606 00:53:14,960 --> 00:53:16,920 THAT THE COMMITTEE AND STUDY IS 1607 00:53:16,920 --> 00:53:20,240 GOING TO HAVE AN ONGOING BASIS. 1608 00:53:20,240 --> 00:53:22,520 I PROBABLY WOULDN'T CONCLUDE 1609 00:53:22,520 --> 00:53:23,880 A PRIORI THAT ALL RESULTS SHOULD 1610 00:53:23,880 --> 00:53:26,640 ON WILL BE RETURNED FROM MY 1611 00:53:26,640 --> 00:53:27,600 PERSPECTIVE, I THINK IT'S A 1612 00:53:27,600 --> 00:53:29,840 MATTER OF THINKING THROUGH EACH 1613 00:53:29,840 --> 00:53:31,160 RESULT IN A PARTICULAR CONTEXT 1614 00:53:31,160 --> 00:53:34,680 THAT YOU'RE WORKING WITH, IN 1615 00:53:34,680 --> 00:53:36,200 COLLABORATION WITH THE FAMILIES. 1616 00:53:36,200 --> 00:53:37,440 AND I THINK WHEN PEOPLE 1617 00:53:37,440 --> 00:53:39,440 UNDERSTAND, AND THAT'S BEEN MY 1618 00:53:39,440 --> 00:53:43,480 EXPERIENCE WITH DOING DOING REH 1619 00:53:43,480 --> 00:53:44,600 WITH PARTICIPANTS, WHEN YOU GIVE 1620 00:53:44,600 --> 00:53:46,080 THEM SORT OF A BROAD 1621 00:53:46,080 --> 00:53:47,080 UNDERSTANDING OF WHAT THE 1622 00:53:47,080 --> 00:53:48,440 LEGITIMATE TRADEOFFS ARE, FOLKS 1623 00:53:48,440 --> 00:53:50,560 WILL SAY OKAY, I GET IT, MAYBE 1624 00:53:50,560 --> 00:53:51,960 IT'S NOT RIGHT FOR ME TO JUST 1625 00:53:51,960 --> 00:53:53,840 SAY I WANT EVERYTHING, GIVE ME 1626 00:53:53,840 --> 00:53:54,240 EVERYTHING. 1627 00:53:54,240 --> 00:53:56,440 PEOPLE UNDERSTAND THERE ARE 1628 00:53:56,440 --> 00:53:57,520 LEGITIMATE TRADEOFFS THERE THAT 1629 00:53:57,520 --> 00:53:59,480 THEY SAY OKAY, LET'S THINK ABOUT 1630 00:53:59,480 --> 00:54:00,720 WHAT'S MOST MEANINGFUL FOR ME 1631 00:54:00,720 --> 00:54:02,680 AND MY FAMILY AND LET'S WORK 1632 00:54:02,680 --> 00:54:03,440 TOGETHER TO DO THIS IN THE RIGHT 1633 00:54:03,440 --> 00:54:05,000 WAY. 1634 00:54:05,000 --> 00:54:06,920 >>OKAY, THANKS, JEFF. 1635 00:54:06,920 --> 00:54:08,080 I THINK FOR THE PURPOSES OF 1636 00:54:08,080 --> 00:54:12,240 TIME, WE'LL MOVE ON TO THE NEXT 1637 00:54:12,240 --> 00:54:12,680 SPEAKER. 1638 00:54:12,680 --> 00:54:19,440 THAT WILL BE DR. KYLE BROTHERS. 1639 00:54:19,440 --> 00:54:19,840 >>GREAT. 1640 00:54:19,840 --> 00:54:21,000 THANK YOU SO MUCH FOR HAVING ME 1641 00:54:21,000 --> 00:54:22,240 THIS MORNING. 1642 00:54:22,240 --> 00:54:24,640 I'M GOING TO CONTINUE THE WORK 1643 00:54:24,640 --> 00:54:27,800 THAT JEFF STARTED, TALK ABOUT 1644 00:54:27,800 --> 00:54:28,520 ETHICAL PRINCIPLES THAT ARE 1645 00:54:28,520 --> 00:54:30,760 RELEVANT HERE. 1646 00:54:30,760 --> 00:54:32,320 AND THINK OF THIS AS SORT OF 1647 00:54:32,320 --> 00:54:33,400 PUTTING SOME LANGUAGE AND IDEAS 1648 00:54:33,400 --> 00:54:36,840 INTO THE ROOM. 1649 00:54:36,840 --> 00:54:37,920 I'M NOT GOING TO SOLVE ANY 1650 00:54:37,920 --> 00:54:39,000 PROBLEMS HERE BUT HOPEFULLY GIVE 1651 00:54:39,000 --> 00:54:41,880 US SORT OF A STARTING PLACE TO 1652 00:54:41,880 --> 00:54:43,400 THINK ABOUT THE LANGUAGE THAT WE 1653 00:54:43,400 --> 00:54:44,960 CAN USE IN TALKING THROUGH SOME 1654 00:54:44,960 --> 00:54:50,480 THIEVES ISSUES. 1655 00:54:50,480 --> 00:54:50,840 OKAY. 1656 00:54:50,840 --> 00:54:52,440 I WANT TO MAKE A DISTINCTION. 1657 00:54:52,440 --> 00:54:54,280 THIS IS SIMILAR TO THE 1658 00:54:54,280 --> 00:54:55,240 DISTINCTION JEFF MADE BUT I 1659 00:54:55,240 --> 00:54:56,520 THINK IT'S REALLY HELPFUL TO 1660 00:54:56,520 --> 00:54:57,880 THINK ABOUT TWO DIFFERENT 1661 00:54:57,880 --> 00:55:00,680 CONTEXTS WHERE WE MIGHT HAVE A 1662 00:55:00,680 --> 00:55:02,480 RESULT THAT INVESTIGATOR IS 1663 00:55:02,480 --> 00:55:03,960 THINKING ABOUT MAYBE THESE 1664 00:55:03,960 --> 00:55:05,000 SHOULD BE RETURNED TO 1665 00:55:05,000 --> 00:55:06,680 PARTICIPANTS. 1666 00:55:06,680 --> 00:55:10,400 THE FIRST IS, YOU KNOW, A STUDY 1667 00:55:10,400 --> 00:55:11,280 DESIGNED PROSPECTIVELY WITH A 1668 00:55:11,280 --> 00:55:12,480 PLAN TO RETURN CERTAIN RESULTS. 1669 00:55:12,480 --> 00:55:14,240 SO SOUNDS LIKE THIS NEXT STAGE 1670 00:55:14,240 --> 00:55:15,600 OF ECHO HOPEFULLY WILL BE THIS 1671 00:55:15,600 --> 00:55:18,040 KIND OF PROJECT. 1672 00:55:18,040 --> 00:55:19,120 SO THE MOTIVATION FOR THIS 1673 00:55:19,120 --> 00:55:20,640 REALLY HAS TWO ELEMENTS TO IT. 1674 00:55:20,640 --> 00:55:22,240 THERE IS AN INHERENT VALUE TO 1675 00:55:22,240 --> 00:55:24,760 THIS, RIGHT? 1676 00:55:24,760 --> 00:55:27,080 IT DEMONSTRATES TRANSPARENCY AND 1677 00:55:27,080 --> 00:55:30,080 RECIPROCITY. 1678 00:55:30,080 --> 00:55:31,520 THERE'S NO OUTRIGHT BENEFIT TO 1679 00:55:31,520 --> 00:55:32,800 THE INVESTIGATOR, TO THE 1680 00:55:32,800 --> 00:55:33,640 RESEARCH, BY DOING THIS. 1681 00:55:33,640 --> 00:55:37,240 OF IT'S JUST RIGHT THING TO DO, 1682 00:55:37,240 --> 00:55:37,880 RIGHT? 1683 00:55:37,880 --> 00:55:38,760 ETHICS IS REALLY INTERESTED IN 1684 00:55:38,760 --> 00:55:40,560 THE RIGHT THING TO DO. 1685 00:55:40,560 --> 00:55:43,560 THERE'S ALSO SEPARATE BUT NOT 1686 00:55:43,560 --> 00:55:45,480 CONFLICTING VALUE THAT IS 1687 00:55:45,480 --> 00:55:46,800 INSTRUMENTAL THAT HAS AN EFFECT 1688 00:55:46,800 --> 00:55:47,960 THAT'S BENEFICIAL, AND THAT 1689 00:55:47,960 --> 00:55:49,720 COULD BE SORT OF AN INCENTIVE TO 1690 00:55:49,720 --> 00:55:51,280 ENCOURAGE PARTICIPANTS TO REMAIN 1691 00:55:51,280 --> 00:55:53,040 ENGAGED WITH THE STUDY. 1692 00:55:53,040 --> 00:55:56,880 SORT OF AGREED TO PARTICIPATE, 1693 00:55:56,880 --> 00:55:58,240 CALL THEM IN THREE MONTHS AND 1694 00:55:58,240 --> 00:55:59,160 GET MORE INFORMATION OR MAYBE 1695 00:55:59,160 --> 00:56:02,200 HAVE THEM COME IN TO COLLECT 1696 00:56:02,200 --> 00:56:02,920 ANOTHER BIO SAMPLE. 1697 00:56:02,920 --> 00:56:04,560 WE WANT FOLKS TO FEEL THAT THIS 1698 00:56:04,560 --> 00:56:05,640 PARTNERSHIP IS VALUABLE TO THEM 1699 00:56:05,640 --> 00:56:07,560 AND THEY WANT TO CONTINUE TO 1700 00:56:07,560 --> 00:56:11,960 PARTICIPATE, SO THIS CLEARLY HAS 1701 00:56:11,960 --> 00:56:13,640 AN INSTRUMENTAL VALUE TO THE 1702 00:56:13,640 --> 00:56:14,960 RESEARCH THAT ALLOWS YOU TO 1703 00:56:14,960 --> 00:56:15,720 SUCCESSFULLY CARRY OUT THE 1704 00:56:15,720 --> 00:56:16,040 RESEARCH. 1705 00:56:16,040 --> 00:56:19,720 AND IN THIS KIND OF STUDY, THE 1706 00:56:19,720 --> 00:56:22,200 RESULT IS GENERATED FOR 1707 00:56:22,200 --> 00:56:23,200 PARTICIPANT AND MANAGED TO BE A 1708 00:56:23,200 --> 00:56:23,760 STUDY MOL SEE. 1709 00:56:23,760 --> 00:56:27,440 THIS IS HOW WE LAN D HANDLE IT. 1710 00:56:27,440 --> 00:56:28,400 WE CAN ALSO THINK ABOUT A 1711 00:56:28,400 --> 00:56:30,000 DIFFERENT KIND OF RESULT. 1712 00:56:30,000 --> 00:56:33,800 A FINDING THAT IS DISCOVERED AND 1713 00:56:33,800 --> 00:56:35,480 THOUGHT TO HAVE POTENTIAL 1714 00:56:35,480 --> 00:56:39,680 IMPLICATIONS FOR A RESEARCH 1715 00:56:39,680 --> 00:56:40,520 PARTICIPANT BUT ITS EXPERIENCE 1716 00:56:40,520 --> 00:56:44,040 IS A SURPRISING EVENT. 1717 00:56:44,040 --> 00:56:45,560 WE COLLECTED THESE SAMPLE WITH 1718 00:56:45,560 --> 00:56:46,560 NO SPECIFIC IDEA ABOUT WHAT KIND 1719 00:56:46,560 --> 00:56:50,400 OF RESEARCH WAS GOING TO BE DONE 1720 00:56:50,400 --> 00:56:52,600 AND THEN A YEAR, TWO, 10 YEARS 1721 00:56:52,600 --> 00:56:54,160 LATER, WE DISCOVER SOMETHING 1722 00:56:54,160 --> 00:56:55,600 ABOUT A BIOSAMPLE THAT WAS 1723 00:56:55,600 --> 00:56:57,040 COLLECTED OR ABOUT THE DATA THAT 1724 00:56:57,040 --> 00:56:58,440 WAS COLLECTED THAT ALL OF A 1725 00:56:58,440 --> 00:57:00,040 SUDDEN, WHOA, THIS SEEMS LIKE 1726 00:57:00,040 --> 00:57:01,040 IT'S GOING TO BE REALLY 1727 00:57:01,040 --> 00:57:05,120 IMPORTANT FOR A PERSON TO KNOW, 1728 00:57:05,120 --> 00:57:07,160 AND WE SORT OF EXPERIENCE THIS 1729 00:57:07,160 --> 00:57:08,080 AS A SURPRISE, THERE WAS NO PLAN 1730 00:57:08,080 --> 00:57:11,920 FOR THIS. 1731 00:57:11,920 --> 00:57:14,960 A KEY POINT I WANT TO MAKE IS 1732 00:57:14,960 --> 00:57:16,800 THAT SOME STUDIES WILL WANT TO 1733 00:57:16,800 --> 00:57:17,480 RETURN SURGEON RESULTS AND OF 1734 00:57:17,480 --> 00:57:18,760 COURSE THEY NEED A POLICY FOR 1735 00:57:18,760 --> 00:57:19,360 HOW TO DO THAT. 1736 00:57:19,360 --> 00:57:21,160 THAT'S WHAT WE'RE HERE FOR. 1737 00:57:21,160 --> 00:57:23,200 BUT ALL STUDIES SHOULD ALSO PLAN 1738 00:57:23,200 --> 00:57:25,200 A PROCESS FOR HOW THEY WILL 1739 00:57:25,200 --> 00:57:26,600 HANDLE UNEXPECTED RESULTS. 1740 00:57:26,600 --> 00:57:28,400 THAT IS INEVITABILITY OF MODERN 1741 00:57:28,400 --> 00:57:29,720 RESEARCH AND WE REALLY NEED TO 1742 00:57:29,720 --> 00:57:33,640 THINK ABOUT BOTH, BUT PROBABLY 1743 00:57:33,640 --> 00:57:34,560 EXISTS ON A SPECTRUM. 1744 00:57:34,560 --> 00:57:36,800 THERE ARE SOME THINGS THAT ARE 1745 00:57:36,800 --> 00:57:38,120 WELL PLANNED, SORT OF LIKE WE 1746 00:57:38,120 --> 00:57:39,280 KNEW BUT MAYBE WE DIDN'T PLAN 1747 00:57:39,280 --> 00:57:39,680 SPECIFICALLY. 1748 00:57:39,680 --> 00:57:40,960 AND THEN THERE ARE THINGS THAT 1749 00:57:40,960 --> 00:57:42,600 ARE REALLY PURE SURPRISE. 1750 00:57:42,600 --> 00:57:45,480 SO THIS IS A SPECTRUM AND WE 1751 00:57:45,480 --> 00:57:46,720 SORT OF NEED TO THINK ABOUT THAT 1752 00:57:46,720 --> 00:57:50,120 WHOLE RANGE. 1753 00:57:50,120 --> 00:57:51,160 OKAY. 1754 00:57:51,160 --> 00:57:51,960 FOR THE PURPOSES OF TALKING 1755 00:57:51,960 --> 00:57:53,240 ABOUT ETHICAL PRINCIPLES, I 1756 00:57:53,240 --> 00:57:55,120 THINK IT'S HELPFUL TO KIND OF 1757 00:57:55,120 --> 00:57:55,760 DICHOTOMIZE THESE AND THINK 1758 00:57:55,760 --> 00:57:56,840 ABOUT WHAT ARE THE PRINCIPLES 1759 00:57:56,840 --> 00:57:58,880 THAT GO ALONG WITH A PLANNED 1760 00:57:58,880 --> 00:58:02,400 RETURN OF RESULTS STRATEGY. 1761 00:58:02,400 --> 00:58:04,400 SO THE TWO KEY ISSUES YOU'VE 1762 00:58:04,400 --> 00:58:06,480 HEARD USED ALREADY A BIT THIS 1763 00:58:06,480 --> 00:58:07,920 MORNING, THE FIRST ONE IS 1764 00:58:07,920 --> 00:58:08,240 RECIPROCITY. 1765 00:58:08,240 --> 00:58:10,480 WHICH IS REALLY -- IT'S A 1766 00:58:10,480 --> 00:58:12,560 SITUATION IN WHICH TWO GROUPS 1767 00:58:12,560 --> 00:58:15,000 AGREE TO HELP EACH OTHER OUT BY 1768 00:58:15,000 --> 00:58:16,280 EXCHANGING ADVANTAGES AND 1769 00:58:16,280 --> 00:58:17,720 HOPEFULLY THOSE ADVANTAGES ARE 1770 00:58:17,720 --> 00:58:18,720 PROPORTIONAL. 1771 00:58:18,720 --> 00:58:20,640 IT'S NOT EXTRACTIVE IN SOME WAY 1772 00:58:20,640 --> 00:58:21,520 THAT I GET SOMETHING FROM YOU 1773 00:58:21,520 --> 00:58:22,800 BUT YOU DON'T GET ANYTHING FROM 1774 00:58:22,800 --> 00:58:23,320 ME. 1775 00:58:23,320 --> 00:58:26,880 BUT RATHER WE'RE EXCHANGING 1776 00:58:26,880 --> 00:58:28,120 PROPORTIONAL ADVANTAGES. 1777 00:58:28,120 --> 00:58:29,840 I BENEFIT, YOU BENEFIT, WE'RE 1778 00:58:29,840 --> 00:58:32,680 BOTH HAPPY WITH THAT EXCHANGE. 1779 00:58:32,680 --> 00:58:34,040 THE NEXT IS TRANSPARENCY, WHICH 1780 00:58:34,040 --> 00:58:35,280 IS SIMPLY A WAY OF DOING THINGS 1781 00:58:35,280 --> 00:58:37,840 IN AN OPEN WAY WITHOUT SECRETS. 1782 00:58:37,840 --> 00:58:39,200 THIS IS -- IT'S REALLY HELPFUL 1783 00:58:39,200 --> 00:58:41,440 TO THINK ABOUT THIS TERM ON ITS 1784 00:58:41,440 --> 00:58:42,840 OWN BECAUSE IT GETS THROWN 1785 00:58:42,840 --> 00:58:45,120 AROUND A LOT, AND WE MAYBE DON'T 1786 00:58:45,120 --> 00:58:46,320 HESITATE TO STOP AND JUST THINK 1787 00:58:46,320 --> 00:58:47,480 ABOUT WHAT DO WE REALLY MEAN 1788 00:58:47,480 --> 00:58:48,480 THERE. 1789 00:58:48,480 --> 00:58:50,120 BUT A KEY THING ABOUT 1790 00:58:50,120 --> 00:58:51,680 TRANSPARENCY IS THE UNDERLYING 1791 00:58:51,680 --> 00:58:52,920 ETHICAL PRINCIPLE OF TRUTH 1792 00:58:52,920 --> 00:58:54,440 TELLING, RIGHT? 1793 00:58:54,440 --> 00:58:55,680 KEEPING INFORMATION THAT I DON'T 1794 00:58:55,680 --> 00:58:58,080 TELL SOMEONE ELSE ABOUT THEM 1795 00:58:58,080 --> 00:59:00,160 COULD BE PERCEIVED AS A LIE, 1796 00:59:00,160 --> 00:59:00,360 RIGHT? 1797 00:59:00,360 --> 00:59:01,600 I DIDN'T TELL YOU THE TRUTH 1798 00:59:01,600 --> 00:59:03,600 ABOUT WHAT I KNOW ABOUT YOU, 1799 00:59:03,600 --> 00:59:06,280 YOUR HEALTH, YOUR ENVIRONMENTAL 1800 00:59:06,280 --> 00:59:11,520 EXPOSURES, ET CETERA. 1801 00:59:11,520 --> 00:59:12,800 SO CLASSIC ETHICS PRINCIPLES 1802 00:59:12,800 --> 00:59:14,920 THAT COME UP IN RESEARCH AND IN 1803 00:59:14,920 --> 00:59:15,960 CLINICAL PRACTICE ARE THESE 1804 00:59:15,960 --> 00:59:18,880 TERMS WHICH WE DON'T NEED TO USE 1805 00:59:18,880 --> 00:59:20,200 THESE TWO DAYS, BUT IT IS GOOD 1806 00:59:20,200 --> 00:59:21,640 TO THINK ABOUT THEM. 1807 00:59:21,640 --> 00:59:23,480 THE FIRST ONE IS BENEFICENCE, 1808 00:59:23,480 --> 00:59:26,400 WHICH IS SORT OF THE OPPORTUNITY 1809 00:59:26,400 --> 00:59:28,720 TO DO GOOD, PRODUCE GOOD FOR 1810 00:59:28,720 --> 00:59:29,360 PEOPLE. 1811 00:59:29,360 --> 00:59:33,080 AND THEN IT'S SORT OF FLIPSIDE, 1812 00:59:33,080 --> 00:59:36,400 IN ETHICS WE CALL IT 1813 00:59:36,400 --> 00:59:40,480 NONMALFEASANCE OR AVOIZ AVOIDIN. 1814 00:59:40,480 --> 00:59:42,960 WE WANT TO UNDUE THEM AND ALSO 1815 00:59:42,960 --> 00:59:47,440 PREVENT HARMS THAT COULD OCCUR. 1816 00:59:47,440 --> 00:59:49,040 SOMETHING I REALLY WANT TO 1817 00:59:49,040 --> 00:59:50,360 EMPHASIZE AND I HOPE WE CAN KEEP 1818 00:59:50,360 --> 00:59:51,440 THIS IN THE ROOM AS WE DISCUSS 1819 00:59:51,440 --> 00:59:53,280 THESE ISSUES, WE'RE OFTEN 1820 00:59:53,280 --> 00:59:53,880 ENTHUSIASTIC ABOUT THE POTENTIAL 1821 00:59:53,880 --> 00:59:55,440 OF OUR SCIENCE TO HELP PEOPLE. 1822 00:59:55,440 --> 00:59:57,960 THAT'S WHY WE DO IT, RIGHT? 1823 00:59:57,960 --> 00:59:59,280 SO SCIENTISTS REALLY BELIEVE THE 1824 00:59:59,280 --> 01:00:04,280 WORK THEY DO IS GOING TO HELP 1825 01:00:04,280 --> 01:00:05,560 PEOPLE, THAT'S WHAT DRIVES THEIR 1826 01:00:05,560 --> 01:00:06,440 DAY TO DAY WORK. 1827 01:00:06,440 --> 01:00:08,720 BUT BECAUSE OF THAT INVESTMENT, 1828 01:00:08,720 --> 01:00:10,240 IT SOMETIMES EASY TO SEE 1829 01:00:10,240 --> 01:00:12,200 POTENTIAL BENEFITS AND WE REALLY 1830 01:00:12,200 --> 01:00:15,120 STRUGGLE TO ANTICIPATE THE 1831 01:00:15,120 --> 01:00:15,760 HARMS. 1832 01:00:15,760 --> 01:00:16,960 BECAUSE WE ARE FOCUSED ON THE 1833 01:00:16,960 --> 01:00:17,360 BENEFITS. 1834 01:00:17,360 --> 01:00:18,440 THAT'S WHAT WE WANT TO GET OUT 1835 01:00:18,440 --> 01:00:19,360 OF THIS. 1836 01:00:19,360 --> 01:00:21,080 BUT SOMETIMES WE DON'T 1837 01:00:21,080 --> 01:00:23,280 ANTICIPATE THOSE HARMS. 1838 01:00:23,280 --> 01:00:24,360 SO ONE EXAMPLE COULD JUST BE 1839 01:00:24,360 --> 01:00:26,200 TRYING TO GET A LITTLE CONCRETE 1840 01:00:26,200 --> 01:00:29,680 HERE, LET'S SAY WE'RE MONITORING 1841 01:00:29,680 --> 01:00:31,440 INDOOR AIR QUALITY ACROSS A 1842 01:00:31,440 --> 01:00:34,920 COHORT OF PEOPLE, AND WE 1843 01:00:34,920 --> 01:00:35,520 DISCOVER CERTAIN PEOPLE HAVE 1844 01:00:35,520 --> 01:00:36,840 SOME KIND OF EXPOSURE IN THEIR 1845 01:00:36,840 --> 01:00:38,840 HOUSE AND WE THINK, OH, TELLING 1846 01:00:38,840 --> 01:00:41,880 THEM ABOUT THAT WOULD BE REALLY 1847 01:00:41,880 --> 01:00:42,360 IMPORTANT. 1848 01:00:42,360 --> 01:00:44,000 SO THEN THOSE FOLKS GO OUT AND 1849 01:00:44,000 --> 01:00:45,840 MAYBE GET AIR FILTERS OR OTHER 1850 01:00:45,840 --> 01:00:47,200 KINDS OF TECHNOLOGIES, AND YOU 1851 01:00:47,200 --> 01:00:48,720 COULD IMAGINE TWO KINDS OF HARMS 1852 01:00:48,720 --> 01:00:49,720 RESULTING FROM THAT. 1853 01:00:49,720 --> 01:00:56,120 ONE IS THAT THAT AIR FILTER 1854 01:00:56,120 --> 01:00:56,880 ACTUALLY DOESN'T SUCCEED IN 1855 01:00:56,880 --> 01:00:58,880 FILTERING OUT THE EXPOSURE, SO 1856 01:00:58,880 --> 01:01:00,920 WE'VE NOW EXPENDED A COST TO GET 1857 01:01:00,920 --> 01:01:02,360 THIS DEVICE, BUT IT ACTUALLY 1858 01:01:02,360 --> 01:01:04,920 DOESN'T CREATE ANY BENEFIT. 1859 01:01:04,920 --> 01:01:06,280 THE OTHER POSSIBILITY IS THAT 1860 01:01:06,280 --> 01:01:08,120 EXPOSURE, ALTHOUGH OUR SCIENCE 1861 01:01:08,120 --> 01:01:09,440 TOLD US IT MIGHT CAUSE HARM, 1862 01:01:09,440 --> 01:01:11,040 ACTUALLY DOESN'T CAUSE ANY HARM. 1863 01:01:11,040 --> 01:01:14,560 AND SO WE BELIEVED OVER A PERIOD 1864 01:01:14,560 --> 01:01:15,480 OF TIME THAT WE WERE TAKING 1865 01:01:15,480 --> 01:01:16,600 THESE STEPS TO PROTECT OURSELVES 1866 01:01:16,600 --> 01:01:18,120 AND WE NEVER NEEDED TO PROTECT 1867 01:01:18,120 --> 01:01:19,280 OURSELVES IN THE FIRST PLACE, 1868 01:01:19,280 --> 01:01:21,600 RIGHT? 1869 01:01:21,600 --> 01:01:23,000 SO I ACTUALLY DON'T THINK THAT 1870 01:01:23,000 --> 01:01:24,440 BIGGEST PROBLEM HERE IS THAT 1871 01:01:24,440 --> 01:01:25,960 PARTICIPANTS WILL BE CONFUSED OR 1872 01:01:25,960 --> 01:01:28,440 THEY WILL BE -- THEY'LL NOT 1873 01:01:28,440 --> 01:01:29,440 UNDERSTAND WHAT THEY'RE TOLD, 1874 01:01:29,440 --> 01:01:31,280 BUT RATHER THAT WE WILL RETURN 1875 01:01:31,280 --> 01:01:32,920 INFORMATION FOCUSED ON THE 1876 01:01:32,920 --> 01:01:34,640 POTENTIAL BENEFIT WITH 1877 01:01:34,640 --> 01:01:35,480 INSUFFICIENT ATTENTION TO WHAT 1878 01:01:35,480 --> 01:01:37,280 ARE THE UNEXPECTED HARMS THAT 1879 01:01:37,280 --> 01:01:37,800 COULD OCCUR. 1880 01:01:37,800 --> 01:01:44,360 OKAY. 1881 01:01:44,360 --> 01:01:45,760 I THINK SEVERAL SPEAKERS ARE 1882 01:01:45,760 --> 01:01:47,400 GOING TO GO INTO THIS IN MORE 1883 01:01:47,400 --> 01:01:48,800 DEPTH BUT I JUST WANTED TO MAKE 1884 01:01:48,800 --> 01:01:50,360 IT VERY CLEAR THAT INTEREST IN 1885 01:01:50,360 --> 01:01:51,520 RECEIVING RETURN OF RESULTS IS 1886 01:01:51,520 --> 01:01:52,160 TYPICALLY VERY HIGH. 1887 01:01:52,160 --> 01:01:53,160 SOME OF YOU HAVE ALREADY 1888 01:01:53,160 --> 01:01:55,640 COMMENTED ABOUT THAT, AND IT'S 1889 01:01:55,640 --> 01:01:57,240 REALLY CLEAR MOST PEOPLE, IF YOU 1890 01:01:57,240 --> 01:01:58,560 SAY DO YOU WANT INFORMATION THAT 1891 01:01:58,560 --> 01:02:00,200 COULD BE IMPORTANT TO YOUR 1892 01:02:00,200 --> 01:02:04,680 HEALTH AND WELLNESS, PEOPLE WILL 1893 01:02:04,680 --> 01:02:05,880 SAY, HELL, YEAH, I WANT THAT, 1894 01:02:05,880 --> 01:02:06,280 RIGHT? 1895 01:02:06,280 --> 01:02:07,280 THE WILLINGNESS TO PARTICIPATE 1896 01:02:07,280 --> 01:02:08,560 IN RESEARCH FROM THE VERY 1897 01:02:08,560 --> 01:02:09,920 BEGINNING CAN BE INFLUENCED BY 1898 01:02:09,920 --> 01:02:10,960 THE OFFER OF RETURN OF RESULTS. 1899 01:02:10,960 --> 01:02:13,280 SO IF WE LOOK AT WILLINGNESS TO 1900 01:02:13,280 --> 01:02:14,440 PARTICIPATE IN RESEARCH, DO YOU 1901 01:02:14,440 --> 01:02:15,840 WANT TO PARTICIPATE IN THE 1902 01:02:15,840 --> 01:02:16,720 STUDY, WE'RE NOT GOING TO GIVE 1903 01:02:16,720 --> 01:02:17,920 YOU ANYTHING, DO YOU WANT TO 1904 01:02:17,920 --> 01:02:18,920 PARTICIPATE IN THIS STUDY, WE'LL 1905 01:02:18,920 --> 01:02:21,640 GIVE YOU SOME STUFF, THE PEOPLE 1906 01:02:21,640 --> 01:02:24,520 WHO RECEIVE AN OFFER WITH RETURN 1907 01:02:24,520 --> 01:02:26,200 OF RESULTS ARE MUCH MORE LIKELY 1908 01:02:26,200 --> 01:02:29,040 TO AGREE TO PARTICIPATE. 1909 01:02:29,040 --> 01:02:31,760 BUT WHEN WE LOOK AT AFTER THE 1910 01:02:31,760 --> 01:02:34,280 FACT, THIS IS SPECIFIC TO 1911 01:02:34,280 --> 01:02:35,120 GENETICS, AND TALK TO FOLKS 1912 01:02:35,120 --> 01:02:36,280 ABOUT HOW DID YOU FEEL ABOUT THE 1913 01:02:36,280 --> 01:02:37,240 INFORMATION THAT YOU RECEIVED 1914 01:02:37,240 --> 01:02:40,000 FROM US, THEY WILL OFTEN EXPRESS 1915 01:02:40,000 --> 01:02:41,560 DISAPPOINTMENT ABOUT HOW LITTLE 1916 01:02:41,560 --> 01:02:43,600 INFORMATION THEY ACTUALLY 1917 01:02:43,600 --> 01:02:43,880 RECEIVED. 1918 01:02:43,880 --> 01:02:46,360 WHEN WE USE THE WORD WHOLE IN 1919 01:02:46,360 --> 01:02:48,000 WHOLE GENOME SEQUENCING, FOLKS 1920 01:02:48,000 --> 01:02:49,000 EXPECT TO GET A TON OF 1921 01:02:49,000 --> 01:02:50,240 INFORMATION. 1922 01:02:50,240 --> 01:02:52,000 HOWEVER, IF WE DON'T HAVE A 1923 01:02:52,000 --> 01:02:53,240 PROCESS WHERE WE'RE SORT OF 1924 01:02:53,240 --> 01:02:55,160 RETURNING ALL OF THE 1925 01:02:55,160 --> 01:02:56,120 INFORMATION, LIKE THE PERSON 1926 01:02:56,120 --> 01:03:00,200 ASKING THE QUESTION IN THE LAST 1927 01:03:00,200 --> 01:03:01,800 SPEECH, AND WE'RE SORT OF LIKE 1928 01:03:01,800 --> 01:03:03,800 FILTERING THAT AND TRYING TO 1929 01:03:03,800 --> 01:03:05,040 FIND THINGS THAT ARE BENEFICIAL, 1930 01:03:05,040 --> 01:03:06,360 PEOPLE WILL BE DISAPPOINTED AT 1931 01:03:06,360 --> 01:03:07,400 HOW MUCH INFORMATION THEY GET. 1932 01:03:07,400 --> 01:03:08,800 AND THE QUESTION COULD BE, DID 1933 01:03:08,800 --> 01:03:14,880 WE SET UNRULES UNREALISTIC EXPS 1934 01:03:14,880 --> 01:03:16,920 IN THE BEGINNING, ESPECIALLY 1935 01:03:16,920 --> 01:03:17,920 DURING THE ENROLLMENT PROCESS, 1936 01:03:17,920 --> 01:03:20,880 WE WANT TO KATION A FAVORABLE 1937 01:03:20,880 --> 01:03:22,880 LIGHT, DID WE GO OVERBOARD AND 1938 01:03:22,880 --> 01:03:24,960 SET UNREALISTIC EXPECTATIONS? 1939 01:03:24,960 --> 01:03:27,040 SO WE REALLY NEED TO TAKE CARE 1940 01:03:27,040 --> 01:03:28,160 WITH THAT KIND OF ISSUE. 1941 01:03:28,160 --> 01:03:30,400 AND WE'VE ALREADY SAID BOTH 1942 01:03:30,400 --> 01:03:31,600 INVESTIGATORS AND FOLKS WHO 1943 01:03:31,600 --> 01:03:32,520 RECEIVE INFORMATION MIGHT 1944 01:03:32,520 --> 01:03:35,560 STRUGGLE WL UNCERTAINTY, THEY 1945 01:03:35,560 --> 01:03:37,400 MIGHT OIFER INTERPRET TO HAVE 1946 01:03:37,400 --> 01:03:38,400 MEANING THAT REALLY DOESN'T 1947 01:03:38,400 --> 01:03:39,240 EXIST. 1948 01:03:39,240 --> 01:03:41,040 UNFORTUNATELY WHEN A SCIENTIST 1949 01:03:41,040 --> 01:03:42,960 OR ESPECIALLY A CLINICIAN TELLS 1950 01:03:42,960 --> 01:03:44,240 A PERSON A PIECE OF INFORMATION, 1951 01:03:44,240 --> 01:03:47,320 THEY ASSUME IT HAS A LEVEL OF EU 1952 01:03:47,320 --> 01:03:49,680 TILL AND VALIDITY THAT MAY BE 1953 01:03:49,680 --> 01:03:50,520 UNJUSTIFIED, RIGHT, ESPECIALLY 1954 01:03:50,520 --> 01:03:52,520 WHEN IT'S SORT OF A NEW KIND OF 1955 01:03:52,520 --> 01:03:55,440 SCIENTIFIC FINDING. 1956 01:03:55,440 --> 01:03:56,200 SO OVERINTERPRETATION ON BOTH 1957 01:03:56,200 --> 01:03:57,120 SIDES IS A POSSIBILITY AND OF 1958 01:03:57,120 --> 01:03:58,560 COURSE WE ALL STRUGGLE WITH 1959 01:03:58,560 --> 01:04:03,840 ACCOMMODATING NEW UNCERTAIN 1960 01:04:03,840 --> 01:04:04,720 INFORMATION. 1961 01:04:04,720 --> 01:04:06,360 SO PRINCIPLE 2 THAT I WANT TO 1962 01:04:06,360 --> 01:04:09,080 PUT INTO THE ROOM, ANY EFFORT TO 1963 01:04:09,080 --> 01:04:09,920 RETURN INDIVIDUAL RESEARCH 1964 01:04:09,920 --> 01:04:10,800 RESULTS SHOULD BE BASED ON 1965 01:04:10,800 --> 01:04:12,440 EVIDENCE ABOUT WHAT WILL PRODUCE 1966 01:04:12,440 --> 01:04:15,720 BENEFITS THAT OUTWEIGH HARMS. 1967 01:04:15,720 --> 01:04:21,800 I'M GOING TO GET INTO THIS NEXT. 1968 01:04:21,800 --> 01:04:23,560 FIRST AND FOREMOST, RESEARCHERS 1969 01:04:23,560 --> 01:04:24,920 MUST ACHIEVE THE AIMS OF THEIR 1970 01:04:24,920 --> 01:04:25,520 PROFESSION, RIGHT? 1971 01:04:25,520 --> 01:04:27,480 TO PROVIDE BENEFIT TO SOCIETY BY 1972 01:04:27,480 --> 01:04:28,120 GENERATING NEW KNOWLEDGE AND TO 1973 01:04:28,120 --> 01:04:29,320 JUSTIFY THE RISKS THAT WERE 1974 01:04:29,320 --> 01:04:30,600 TAKEN BY RESEARCH PARTICIPANTS 1975 01:04:30,600 --> 01:04:32,480 BY LETTING THEIR INFORMATION AND 1976 01:04:32,480 --> 01:04:35,000 BIOSAMPLES BE COLLECTED. 1977 01:04:35,000 --> 01:04:36,800 SO IF WE DON'T PROVIDE A BENEFIT 1978 01:04:36,800 --> 01:04:38,000 TO SOCIETY, THEN WE DIDN'T 1979 01:04:38,000 --> 01:04:40,120 JUSTIFY THE RISK THAT THE 1980 01:04:40,120 --> 01:04:41,600 PARTICIPANTS TOOK ON BY AGREAING 1981 01:04:41,600 --> 01:04:42,000 TO PARTICIPATE. 1982 01:04:42,000 --> 01:04:44,120 SO WE REALLY NEED TO MAKE SURE 1983 01:04:44,120 --> 01:04:47,040 THE SCIENCE LEADS TO THE VALUE 1984 01:04:47,040 --> 01:04:52,640 THAT WAS HOPED FOR. 1985 01:04:52,640 --> 01:04:56,560 SO AGAIN, RESEARCHERS MUST NOT 1986 01:04:56,560 --> 01:04:59,520 PURSUE RETURN OF RESULTS AT THE 1987 01:04:59,520 --> 01:05:02,880 COST OF SCIENTIFIC BENEFIT. 1988 01:05:02,880 --> 01:05:04,400 BUT RETURN OF RESULTS AND 1989 01:05:04,400 --> 01:05:05,840 ACHIEVING SCIENTIFIC BENEFIT CAN 1990 01:05:05,840 --> 01:05:07,440 ACTUALLY WORK TOGETHER TO 1991 01:05:07,440 --> 01:05:09,920 MAXIMIZE BENEFIT TO THE 1992 01:05:09,920 --> 01:05:11,160 PARTICIPANTS AND TO SOCIETY, BUT 1993 01:05:11,160 --> 01:05:12,600 WE JUST NEED TO ORGANIZE OUR 1994 01:05:12,600 --> 01:05:14,400 APPROACH SO THAT THOSE THINGS 1995 01:05:14,400 --> 01:05:16,480 ARE SYNERGISTIC, NOT IN CONFLICT 1996 01:05:16,480 --> 01:05:21,480 WITH ONE ANOTHER. 1997 01:05:21,480 --> 01:05:23,440 AND SO UNDERLYING THAT PRINCIPLE 1998 01:05:23,440 --> 01:05:25,640 IS REALLY THE IDEA THAT A 1999 01:05:25,640 --> 01:05:27,680 CENTRAL ELEMENT OF ANY RETURN OF 2000 01:05:27,680 --> 01:05:28,880 RESULTS PLAN MUST BE AN 2001 01:05:28,880 --> 01:05:31,400 ASSESSMENT OF OPPORTUNITY COSTS. 2002 01:05:31,400 --> 01:05:35,440 WE CAN DO THIS RETURN OF RESULTS 2003 01:05:35,440 --> 01:05:37,280 THING THAT WILL CARRY A COST TO 2004 01:05:37,280 --> 01:05:37,960 EVERYTHING ELSE THAT WE'RE DOING 2005 01:05:37,960 --> 01:05:39,440 AND WE NEED TO BALANCE THE PROS 2006 01:05:39,440 --> 01:05:44,040 AND CONS OF THAT. 2007 01:05:44,040 --> 01:05:45,120 OKAY. 2008 01:05:45,120 --> 01:05:46,800 SO ANOTHER IMPORTANT TOPIC TO 2009 01:05:46,800 --> 01:05:49,040 THINK ABOUT IS THE FUTURE 2010 01:05:49,040 --> 01:05:50,000 DIRECTION FOR RESEARCH IN THIS 2011 01:05:50,000 --> 01:05:51,560 AREA. 2012 01:05:51,560 --> 01:05:54,040 SO AS YOU CAN IMAGINE, BENEFIT 2013 01:05:54,040 --> 01:05:56,600 AND HARM FROM RETURNING RESULTS 2014 01:05:56,600 --> 01:05:58,880 CAN ITSELF BE A MEASURABLE KIND 2015 01:05:58,880 --> 01:06:01,120 OF THING, AND IN FACT, IT CAN BE 2016 01:06:01,120 --> 01:06:03,520 ITSELF A HIGHLY VALUABLE PART OF 2017 01:06:03,520 --> 01:06:05,720 OUR RESEARCH. 2018 01:06:05,720 --> 01:06:09,160 SO IF WE'RE LOOKING AT A 2019 01:06:09,160 --> 01:06:11,160 PARTICULAR EXPOSURE LIKE HEAVY 2020 01:06:11,160 --> 01:06:12,480 METALS IN OUR WATER SUPPLY OR 2021 01:06:12,480 --> 01:06:14,640 SOMETHING LIKE THAT, MAYBE WE'VE 2022 01:06:14,640 --> 01:06:17,520 NEVER HAD AN OPPORTUNITY TO 2023 01:06:17,520 --> 01:06:18,080 EVALUATE WHETHER INFORMATION 2024 01:06:18,080 --> 01:06:21,280 LIKE THAT IS USEFUL TO PEOPLE, 2025 01:06:21,280 --> 01:06:23,680 AND SO ACTUALLY STUDYING, WE 2026 01:06:23,680 --> 01:06:25,440 GAVE TO PEOPLE AND FOUND OUT 2027 01:06:25,440 --> 01:06:26,680 WHETHER IT IS HELPFUL TO THEM. 2028 01:06:26,680 --> 01:06:27,800 THAT IS A HIGHLY VALUABLE TYPE 2029 01:06:27,800 --> 01:06:30,640 OF RESEARCH, AND COULD AND 2030 01:06:30,640 --> 01:06:33,880 SHOULD, I THINK, BE INCORPORATED 2031 01:06:33,880 --> 01:06:38,320 INTO RETURN EVER RESULTS KINDS F 2032 01:06:38,320 --> 01:06:39,320 EFFORTS IN LARGE STUDIES LIKE 2033 01:06:39,320 --> 01:06:39,640 THIS. 2034 01:06:39,640 --> 01:06:40,920 YOU CAN THINK ABOUT 2035 01:06:40,920 --> 01:06:41,880 EVIDENCE-BASED MEDICINE WHICH IS 2036 01:06:41,880 --> 01:06:43,200 SORT OF IF WE DO AN INTERVENTION 2037 01:06:43,200 --> 01:06:48,000 IN A MEDICAL SETTING, DOES THAT 2038 01:06:48,000 --> 01:06:49,760 CARRY A BENEFIT THAT OUTWEIGHS 2039 01:06:49,760 --> 01:06:51,960 THE HARMS AND MAYBE DOES THAT 2040 01:06:51,960 --> 01:06:53,280 BENEFIT BEAT OUT THE BENEFITS OF 2041 01:06:53,280 --> 01:06:55,960 THE OTHER ALTERNATIVES THAT WE 2042 01:06:55,960 --> 01:06:56,240 HAD? 2043 01:06:56,240 --> 01:06:57,440 SO I THINK WE SHOULD REALLY 2044 01:06:57,440 --> 01:06:59,280 THINK ABOUT CAN WE BUILD A FIELD 2045 01:06:59,280 --> 01:07:04,800 OF RESEARCH FOCUSED ON 2046 01:07:04,800 --> 01:07:06,320 EVIDENCE-BASED ENVIRONMENTAL 2047 01:07:06,320 --> 01:07:08,360 REPORT-BACK THAT WE ARE DOING 2048 01:07:08,360 --> 01:07:09,920 THIS PRACTICE OF REPORTING 2049 01:07:09,920 --> 01:07:11,120 ENVIRONMENTAL INFORMATION TO 2050 01:07:11,120 --> 01:07:12,480 FOLKS, MAYBE OTHER KINDS OF 2051 01:07:12,480 --> 01:07:13,720 INFORMATION, AND WE WANT TO 2052 01:07:13,720 --> 01:07:15,040 BUILD AN EVIDENCE BASE ABOUT 2053 01:07:15,040 --> 01:07:16,000 WHAT'S BENEFICIAL AND WHAT'S 2054 01:07:16,000 --> 01:07:18,160 NOT. 2055 01:07:18,160 --> 01:07:20,280 AND THEN WE CAN ALSO DO RESEARCH 2056 01:07:20,280 --> 01:07:23,600 TO BETTER UNDERSTAND PARTICIPANT 2057 01:07:23,600 --> 01:07:24,560 PERSPECTIVES ON NON-CLINICAL 2058 01:07:24,560 --> 01:07:26,440 TYPES OF INFORMATION. 2059 01:07:26,440 --> 01:07:27,640 SO THERE'S BEEN A LOT OF 2060 01:07:27,640 --> 01:07:30,240 RESEARCH ON WHAT FOLKS THINK 2061 01:07:30,240 --> 01:07:32,360 ABOUT GENETICS TYPE OF RESULTS 2062 01:07:32,360 --> 01:07:33,840 IN THEIR RESEARCH PARTICIPATION. 2063 01:07:33,840 --> 01:07:36,360 SO WHAT ABOUT OTHER TYPES, WHAT 2064 01:07:36,360 --> 01:07:37,680 DO PEOPLE THINK ABOUT THAT KIND 2065 01:07:37,680 --> 01:07:40,160 OF INFORMATION? 2066 01:07:40,160 --> 01:07:40,520 OKAY. 2067 01:07:40,520 --> 01:07:41,720 I JUST QUICKLY WANT TO TALK 2068 01:07:41,720 --> 01:07:44,440 ABOUT THIS UNEXPECTED RETURN OF 2069 01:07:44,440 --> 01:07:45,760 RESULTS, THE SORT OF THING THAT 2070 01:07:45,760 --> 01:07:49,160 WE DISCOVERED LATER ON AND WERE 2071 01:07:49,160 --> 01:07:50,240 SURPRISED BY IT AND NOW WE'RE 2072 01:07:50,240 --> 01:07:51,160 ASKING THE QUESTION, SHOULD WE 2073 01:07:51,160 --> 01:07:52,280 GIVE IT BACK TO THE PARTICIPANTS 2074 01:07:52,280 --> 01:07:53,480 EVEN THOUGH WE DIDN'T TALK WITH 2075 01:07:53,480 --> 01:07:56,520 THEM ABOUT THAT POSSIBILITY? 2076 01:07:56,520 --> 01:07:58,240 AND THE KEY ETHICAL PRINCIPAL 2077 01:07:58,240 --> 01:08:03,240 HERE IS WHAT'S CALLED DUTY TO 2078 01:08:03,240 --> 01:08:03,920 RESCUE. 2079 01:08:03,920 --> 01:08:06,640 SO DUTY TO REESE REST QUEUE 2080 01:08:06,640 --> 01:08:09,240 TYPICALLY MEANS A PERSON IN A 2081 01:08:09,240 --> 01:08:11,320 PARTICULAR CONTEXT HAS A DUTY TO 2082 01:08:11,320 --> 01:08:12,960 TAKE AN ACTION TO PROTECT 2083 01:08:12,960 --> 01:08:15,240 ANOTHER PERSON FROM HARM. 2084 01:08:15,240 --> 01:08:17,320 AND THE CLASSIC EXAMPLE IN 2085 01:08:17,320 --> 01:08:18,960 ETHICS IS LIKE I'M WALKING BY A 2086 01:08:18,960 --> 01:08:20,480 POND AND A CHILD FALLS INTO THE 2087 01:08:20,480 --> 01:08:22,680 POND, DO I HAVE A DUTY AS A 2088 01:08:22,680 --> 01:08:24,000 STRANGER TO JUMP IN THE WATER 2089 01:08:24,000 --> 01:08:25,280 AND GO RESCUE THAT PERSON, 2090 01:08:25,280 --> 01:08:25,760 RIGHT? 2091 01:08:25,760 --> 01:08:28,960 SO THAT'S A CLASSIC EXAMPLE. 2092 01:08:28,960 --> 01:08:31,200 THE DUTY TO RESCUE EXISTS ON A 2093 01:08:31,200 --> 01:08:31,800 SPECTRUM. 2094 01:08:31,800 --> 01:08:33,360 IT'S NOT EITHER I HAD THE DUTY 2095 01:08:33,360 --> 01:08:34,640 OR I DON'T, BUT RATHER, THERE 2096 01:08:34,640 --> 01:08:36,360 ARE DUTIES THAT GET STRONGER AND 2097 01:08:36,360 --> 01:08:40,080 WEAKER DEPENDING ON THE CONTEXT. 2098 01:08:40,080 --> 01:08:43,880 SO THE PERSON AT RISK IS READILY 2099 01:08:43,880 --> 01:08:44,880 IDENTIFIABLE SORT OF I KNOW WHO 2100 01:08:44,880 --> 01:08:47,520 THIS IS, I CAN IDENTIFY THEM AND 2101 01:08:47,520 --> 01:08:48,120 GO FIND THEM. 2102 01:08:48,120 --> 01:08:52,160 THE HARM IS HIGHLY FORESEEABLE. 2103 01:08:52,160 --> 01:08:54,120 THIS IS A KEY ISSUE BECAUSE AT 2104 01:08:54,120 --> 01:08:55,440 TIMES WE HAVE A PIECE OF 2105 01:08:55,440 --> 01:08:56,320 INFORMATION, WE KNOW THAT IT CAN 2106 01:08:56,320 --> 01:08:58,680 BE A RISK, BUT MAYBE WHAT WE 2107 01:08:58,680 --> 01:09:00,120 CALL IN GENETICS THE PENETRANCE, 2108 01:09:00,120 --> 01:09:02,280 THE CHANCE OF THAT LEADING TO A 2109 01:09:02,280 --> 01:09:03,560 RISK ARE LOW SO MAYBE THE 2110 01:09:03,560 --> 01:09:05,240 OUTCOME THAT A THING WILL 2111 01:09:05,240 --> 01:09:07,000 ACTUALLY HAPPEN IS NOT HIGHLY 2112 01:09:07,000 --> 01:09:07,640 FORESEEABLE. 2113 01:09:07,640 --> 01:09:10,040 A DUTY ONLY EXISTS IF THERE'S NO 2114 01:09:10,040 --> 01:09:11,040 ALTERNATIVE METHOD FOR 2115 01:09:11,040 --> 01:09:15,280 PREVENTING THAT HARM. 2116 01:09:15,280 --> 01:09:16,920 AND TO BE REALLY CLEAR, THE HARM 2117 01:09:16,920 --> 01:09:18,040 HAS TO BE PREVENTABLE. 2118 01:09:18,040 --> 01:09:20,080 THERE'S NO DUTY TO JUMP INTO A 2119 01:09:20,080 --> 01:09:23,280 POND TO RESCUE A CHILD WHO HAS 2120 01:09:23,280 --> 01:09:24,000 UNFORTUNATELY ALREADY DIED, SO 2121 01:09:24,000 --> 01:09:25,760 YOU HAVE TO BE ABLE TO PREVENT 2122 01:09:25,760 --> 01:09:27,080 THE HARM IN ORDER FOR THERE TO 2123 01:09:27,080 --> 01:09:28,720 BE A DUTY. 2124 01:09:28,720 --> 01:09:29,920 I JUST WANTED TO MENTION THIS 2125 01:09:29,920 --> 01:09:33,560 BECAUSE IT'S A REALLY GOOD 2126 01:09:33,560 --> 01:09:35,360 EXAMPLE FROM THE HISTORY OF 2127 01:09:35,360 --> 01:09:39,000 ETHICS CALLED THE TARASOFF DUTY, 2128 01:09:39,000 --> 01:09:40,520 BASICALLY THE DUTY OF A 2129 01:09:40,520 --> 01:09:41,600 PSYCHOTHERAPIST WHO IS TOLD BY A 2130 01:09:41,600 --> 01:09:42,680 CLIENT THAT THEY ARE GOING TO 2131 01:09:42,680 --> 01:09:43,800 COMMIT VIOLENCE AGAINST ANOTHER 2132 01:09:43,800 --> 01:09:44,960 PERSON TO GO FIND THAT PERSON 2133 01:09:44,960 --> 01:09:46,880 AND TELL THEM ABOUT THAT RISK OF 2134 01:09:46,880 --> 01:09:47,880 VIOLENCE. 2135 01:09:47,880 --> 01:09:49,320 FORESEEABILITY IS HIGH, RISK IS 2136 01:09:49,320 --> 01:09:50,440 HIGH, PREVENTABILITY IS HIGH, 2137 01:09:50,440 --> 01:09:55,000 THERE'S A STRONG DUTY THERE. 2138 01:09:55,000 --> 01:09:56,200 I THINK I'M GOING TO STOP THERE, 2139 01:09:56,200 --> 01:09:58,120 BUT I DO JUST WANT TO ENCOURAGE 2140 01:09:58,120 --> 01:10:01,320 EVERYONE TO THINK ABOUT THIS 2141 01:10:01,320 --> 01:10:03,840 DUTY TO RESCUE. 2142 01:10:03,840 --> 01:10:05,640 WHAT A MEANS FOR A RESEARCHER 2143 01:10:05,640 --> 01:10:07,520 WHO IS A CLINICIAN VERSUS NOT A 2144 01:10:07,520 --> 01:10:12,000 CLINICIAN AND WHAT IT MEANS FOR 2145 01:10:12,000 --> 01:10:13,080 STRONG INFORMATION THAT'S 2146 01:10:13,080 --> 01:10:14,000 PREVENTABLE AND FOR INFORMATION 2147 01:10:14,000 --> 01:10:15,240 THAT WE DON'T HAVE EVIDENCE THAT 2148 01:10:15,240 --> 01:10:15,800 IT'S PREVENTABLE. 2149 01:10:15,800 --> 01:10:18,800 THANKS SO MUCH. 2150 01:10:18,800 --> 01:10:19,960 >>OKAY, THANKS. 2151 01:10:19,960 --> 01:10:28,680 QUESTIONS? 2152 01:10:28,680 --> 01:10:31,200 >>HI. 2153 01:10:31,200 --> 01:10:33,640 IT'S JAYDEN. 2154 01:10:33,640 --> 01:10:35,280 HOW WOULD YOU USE YOUR RESULTS 2155 01:10:35,280 --> 01:10:37,960 FROM THE FIRST STUDY TO ENHANCE 2156 01:10:37,960 --> 01:10:39,000 YOUR SECOND? 2157 01:10:39,000 --> 01:10:41,960 LIKE HOW WOULD YOU USE TO 2158 01:10:41,960 --> 01:10:44,080 IMPROVE IT, IMPROVE UPON IT OR, 2159 01:10:44,080 --> 01:10:46,760 YOU KNOW, HELP PARTICIPANTS IN A 2160 01:10:46,760 --> 01:10:47,840 BETTER WAY TO GET THEIR 2161 01:10:47,840 --> 01:10:51,480 INFORMATION? 2162 01:10:51,480 --> 01:10:53,560 >>SAY THAT AGAIN? 2163 01:10:53,560 --> 01:10:54,680 THE PLANNED RETURN OF RESULTS? 2164 01:10:54,680 --> 01:10:57,040 >>HOW WOULD YOU USE THE RESULT 2165 01:10:57,040 --> 01:11:00,440 THAT YOU PRODUCED IN THE FIRST 2166 01:11:00,440 --> 01:11:03,040 ROUND OF RESEARCH TO ENHANCE 2167 01:11:03,040 --> 01:11:04,040 YOUR SECOND ROUND? 2168 01:11:04,040 --> 01:11:07,840 >>YEAH, THAT'S ACTUALLY A GREAT 2169 01:11:07,840 --> 01:11:09,480 QUESTION, BECAUSE I THINK IF WE 2170 01:11:09,480 --> 01:11:11,160 ADOPT A RETURN OF RESULTS 2171 01:11:11,160 --> 01:11:14,600 APPROACH FOR A RESEARCH STUDY 2172 01:11:14,600 --> 01:11:16,360 THAT DOESN'T THEN EVALUATE THAT 2173 01:11:16,360 --> 01:11:18,200 THING AS ITS OWN RESEARCH STUDY, 2174 01:11:18,200 --> 01:11:19,520 LIKE WE GIVE THIS INFORMATION, 2175 01:11:19,520 --> 01:11:21,920 WHAT HAPPENS, THEN WE REALLY 2176 01:11:21,920 --> 01:11:23,400 MISS OUT ON AN OPPORTUNITY TO 2177 01:11:23,400 --> 01:11:24,640 INFORM THE NEXT TIME WE DO THIS 2178 01:11:24,640 --> 01:11:25,760 TYPE OF THING, RIGHT? 2179 01:11:25,760 --> 01:11:27,600 AND TO HELP THE WHOLE WORLD OF 2180 01:11:27,600 --> 01:11:28,600 RESEARCHERS, EVERYBODY WHO'S 2181 01:11:28,600 --> 01:11:30,600 WORKING IN THE SAME FIELD, TO 2182 01:11:30,600 --> 01:11:33,840 UNDERSTAND WHAT I DOES THIS 2183 01:11:33,840 --> 01:11:36,200 INFORMATION MEAN, WHAT ARE THE 2184 01:11:36,200 --> 01:11:36,800 OUTCOMES, WHAT HAPPENS IF WE 2185 01:11:36,800 --> 01:11:39,800 TELL A PERSON ABOUT THAT, AND DO 2186 01:11:39,800 --> 01:11:42,000 WE BRING ABOUT ANY BENEFIT OR 2187 01:11:42,000 --> 01:11:44,560 HARM BY GIVING THAT TO A PERSON, 2188 01:11:44,560 --> 01:11:45,920 AND THEN HOPEFULLY THE NEXT TIME 2189 01:11:45,920 --> 01:11:47,960 THAT WE DO A STUDY THAT INVOLVES 2190 01:11:47,960 --> 01:11:50,160 SIMILAR TYPES OF INFORMATION, WE 2191 01:11:50,160 --> 01:11:51,720 WILL KNOW QUITE CLEARLY WHAT WE 2192 01:11:51,720 --> 01:11:54,000 SHOULD BE DOING, RIGHT? 2193 01:11:54,000 --> 01:11:55,600 SO -- BUT IF WE NEVER STUDY 2194 01:11:55,600 --> 01:11:59,600 THAT, WE'LL OVERAND OVER AND OVD 2195 01:11:59,600 --> 01:12:01,440 OVER AGAIN DO RESEARCH IN WHICH 2196 01:12:01,440 --> 01:12:02,480 WE NEVER KNOW WHETHER THAT 2197 01:12:02,480 --> 01:12:03,600 INFORMATION IS HELPFUL OR NOT. 2198 01:12:03,600 --> 01:12:06,960 THANK YOU. 2199 01:12:06,960 --> 01:12:09,440 >>ANY OTHER QUESTIONS? 2200 01:12:09,440 --> 01:12:09,640 MATT? 2201 01:12:09,640 --> 01:12:10,760 >>THANKS A LOT, KYLE. 2202 01:12:10,760 --> 01:12:13,720 I'D LIKE TO BRING UP ONE OF OUR 2203 01:12:13,720 --> 01:12:14,200 CROSS-CUTTING THEMES. 2204 01:12:14,200 --> 01:12:15,840 SO THIS WILL BE A QUESTION FOR 2205 01:12:15,840 --> 01:12:18,360 YOU BUT FOR THE REST OF THE 2206 01:12:18,360 --> 01:12:18,760 WORKSHOP. 2207 01:12:18,760 --> 01:12:22,560 AND ONE OF THEM IS HOW DOES 2208 01:12:22,560 --> 01:12:24,800 RESULT RETURN TO PREGNANT 2209 01:12:24,800 --> 01:12:26,000 PARTICIPANTS AND CHILDREN AND 2210 01:12:26,000 --> 01:12:26,960 ADOLESCENTS DIFFER FROM OTHER 2211 01:12:26,960 --> 01:12:27,480 ADULTS? 2212 01:12:27,480 --> 01:12:29,280 AND I'M THINKING ABOUT YOUR 2213 01:12:29,280 --> 01:12:31,280 UNEXPECTED RESULT EXAMPLE. 2214 01:12:31,280 --> 01:12:33,600 AND OFTENTIMES WE COLLECT 2215 01:12:33,600 --> 01:12:34,680 BIOSAMPLES FROM PREGNANT 2216 01:12:34,680 --> 01:12:35,840 PARTICIPANTS AND THEN A YEAR 2217 01:12:35,840 --> 01:12:37,200 LATER OR TWO YEARS LATER OR FIVE 2218 01:12:37,200 --> 01:12:40,360 YEARS LATER, WE GET A RESULT. 2219 01:12:40,360 --> 01:12:43,680 AND MAYBE EVEN NOW WE HAVE SOME 2220 01:12:43,680 --> 01:12:45,400 INFORMATION THAT CHANGING THAT 2221 01:12:45,400 --> 01:12:48,120 EXPOSURE DURING PREGNANCY COULD 2222 01:12:48,120 --> 01:12:49,960 HELP THE PREGNANT WOMAN OR HER 2223 01:12:49,960 --> 01:12:50,800 OFFSPRING. 2224 01:12:50,800 --> 01:12:53,480 BUT NOW IT'S FIVE YEARS LATER. 2225 01:12:53,480 --> 01:12:56,400 AND SO THERE'S A TIME DEPENDENCY 2226 01:12:56,400 --> 01:12:57,760 ELEMENT WHEN WE'RE TALKING ABOUT 2227 01:12:57,760 --> 01:13:00,920 THESE EARLY LIFE COURSE PERIODS. 2228 01:13:00,920 --> 01:13:02,560 WE HAVE CRITICAL PERIODS IN 2229 01:13:02,560 --> 01:13:05,960 WHICH SOME EXPOSURE MAY HAVE A 2230 01:13:05,960 --> 01:13:07,400 LIFELONG IMPACT, IF IT DURING 2231 01:13:07,400 --> 01:13:08,320 THAT CRITICAL PERIOD BUT NOT 2232 01:13:08,320 --> 01:13:08,760 LATER. 2233 01:13:08,760 --> 01:13:10,320 SO HOW DO YOU THINK ABOUT THAT 2234 01:13:10,320 --> 01:13:13,560 KIND OF ISSUE? 2235 01:13:13,560 --> 01:13:15,160 AND APPLYING ETHICAL PRINCIPLES? 2236 01:13:15,160 --> 01:13:17,600 >>I THINK THIS IS A GREAT 2237 01:13:17,600 --> 01:13:19,040 QUESTION FOR THE ECHO 2238 01:13:19,040 --> 01:13:20,480 PARTICIPANTS TO GIVE US FEEDBACK 2239 01:13:20,480 --> 01:13:27,440 ON, BECAUSE I THINK THERE'S A 2240 01:13:27,440 --> 01:13:28,040 DIFFERENCE BETWEEN INFORMATION 2241 01:13:28,040 --> 01:13:28,880 THAT I'M RETURNING TO YOU 2242 01:13:28,880 --> 01:13:30,160 BECAUSE I THINK RIGHT NOW OR IN 2243 01:13:30,160 --> 01:13:31,480 THE NEAR FUTURE, YOU COULD TAKE 2244 01:13:31,480 --> 01:13:34,640 ACTION TO PREVENT AN OUTCOME, 2245 01:13:34,640 --> 01:13:36,640 AND THERE'S INFORMATION THAT 2246 01:13:36,640 --> 01:13:42,280 SOMETHING HAS ALREADY HAPPENED, 2247 01:13:42,280 --> 01:13:43,400 AND FOLKS ARE IN A POSITION OF 2248 01:13:43,400 --> 01:13:44,480 TRYING TO MAKE SENSE OF EVENTS 2249 01:13:44,480 --> 01:13:45,560 THAT HAPPENED TO THEM IN THEIR 2250 01:13:45,560 --> 01:13:46,680 LIVES THAT THEY WEREN'T ABLE TO 2251 01:13:46,680 --> 01:13:47,800 PREVENT, SO RECEIVING 2252 01:13:47,800 --> 01:13:51,720 INFORMATION AFTER THE FACT COULD 2253 01:13:51,720 --> 01:13:52,920 ACTUALLY PROVIDE A KIND OF 2254 01:13:52,920 --> 01:13:54,440 BENEFIT TO FOLKS SIMPLY BECAUSE 2255 01:13:54,440 --> 01:13:56,720 THEY DON'T KNOW WHY A THING 2256 01:13:56,720 --> 01:13:58,160 HAPPENED, AND THEY WOULD LOVE TO 2257 01:13:58,160 --> 01:13:59,560 HAVE SOME EXPLANATION, LIKE 2258 01:13:59,560 --> 01:14:00,360 THEY'RE TRYING TO MAKE MEANING 2259 01:14:00,360 --> 01:14:01,960 OF THAT IN THEIR LIVES. 2260 01:14:01,960 --> 01:14:04,800 AND MAYBE A GOOD EXAMPLE WOULD 2261 01:14:04,800 --> 01:14:06,160 BE FAMILIES WHO HAVE CHILDREN 2262 01:14:06,160 --> 01:14:06,800 WITH AUTISM. 2263 01:14:06,800 --> 01:14:08,120 FAMILIES WHO HAVE CHILDREN WITH 2264 01:14:08,120 --> 01:14:09,960 AUTISM EXPERIENCE GREAT JOY. 2265 01:14:09,960 --> 01:14:13,240 THEY ALSO EXPERIENCE QUESTIONS 2266 01:14:13,240 --> 01:14:15,760 ABOUT, YOU KNOW, WHY DID THIS 2267 01:14:15,760 --> 01:14:16,640 HAPPEN, HOW DID IT COME ABOUT, 2268 01:14:16,640 --> 01:14:18,400 COULD I HAVE DONE SOMETHING 2269 01:14:18,400 --> 01:14:20,680 DIFFERENTLY, AND OF COURSE WE 2270 01:14:20,680 --> 01:14:24,200 KNOW THAT MOTHERS WHO CARRY, YOU 2271 01:14:24,200 --> 01:14:25,920 KNOW, THAT HAVE PREGNANCY OFTEN 2272 01:14:25,920 --> 01:14:27,280 WONDER, DID I DO SOMETHING 2273 01:14:27,280 --> 01:14:28,920 DURING THIS TIME THAT BROUGHT 2274 01:14:28,920 --> 01:14:30,360 ABOUT AN OUTCOME? 2275 01:14:30,360 --> 01:14:31,560 AND SO I THINK PROVIDING 2276 01:14:31,560 --> 01:14:34,040 INFORMATION LATER COULD BE 2277 01:14:34,040 --> 01:14:35,360 HELPFUL, BUT IT WOULD BE REALLY 2278 01:14:35,360 --> 01:14:38,760 IMPORTANT TO KNOW EMPIRICALLY 2279 01:14:38,760 --> 01:14:41,400 WHAT DO FOLKS ACTUALLY THINK WHO 2280 01:14:41,400 --> 01:14:42,040 HAVE ALREADY EXPERIENCED THAT 2281 01:14:42,040 --> 01:14:43,440 KIND OF OUTCOME, WOULD THEY WANT 2282 01:14:43,440 --> 01:14:46,040 THAT KIND OF INFORMATION IN A 2283 01:14:46,040 --> 01:14:47,360 PARTICULAR CONTEXT, AND IF WE 2284 01:14:47,360 --> 01:14:51,320 DID RETURN TO THEM, DID THEY 2285 01:14:51,320 --> 01:14:52,480 FIND, IN FACT, THAT IT HELPED 2286 01:14:52,480 --> 01:14:54,160 THEM DEAL WITH THE GUILT OR 2287 01:14:54,160 --> 01:14:58,120 MAYBE SORT OF MISPLACED GUILT 2288 01:14:58,120 --> 01:14:58,960 ABOUT WHAT HAPPENED OR THE 2289 01:14:58,960 --> 01:15:00,120 PROCESS OF MAKING MEANING, DID 2290 01:15:00,120 --> 01:15:01,360 IT ACTUALLY BRING ABOUT A 2291 01:15:01,360 --> 01:15:04,120 BENEFIT FOR THEM. 2292 01:15:04,120 --> 01:15:06,160 I'M SORRY, I'LL ADD ONE LITTLE 2293 01:15:06,160 --> 01:15:06,640 ELEMENT HERE. 2294 01:15:06,640 --> 01:15:08,960 THE PEDIATRIC CONTEXT, I KNOW 2295 01:15:08,960 --> 01:15:10,280 MANY OF YOU WORK IN PEDIATRICS 2296 01:15:10,280 --> 01:15:11,880 AND THAT'S SORT OF YOUR BREAD 2297 01:15:11,880 --> 01:15:15,040 AND BUTTER, THERE'S ALWAYS THE 2298 01:15:15,040 --> 01:15:16,800 QUESTION ABOUT THERE'S A BALANCE 2299 01:15:16,800 --> 01:15:18,880 OF INTERESTS FOR CHILDREN. 2300 01:15:18,880 --> 01:15:22,560 CHILDREN ARE OFTEN NOT TAKING 2301 01:15:22,560 --> 01:15:24,440 ACTION FOR THEIR OWN BENEFIT BUT 2302 01:15:24,440 --> 01:15:25,880 THEY DEPEND ON OTHERS TO TAKE 2303 01:15:25,880 --> 01:15:27,120 ACTIONS TO HELP THEM. 2304 01:15:27,120 --> 01:15:30,280 SO THERE IS A QUESTION ABOUT -- 2305 01:15:30,280 --> 01:15:31,480 WITH THE TIMING OF INFORMATION, 2306 01:15:31,480 --> 01:15:32,720 IS THIS THE KIND OF THING THAT 2307 01:15:32,720 --> 01:15:36,600 SINCE IT'S NO LONGER 2308 01:15:36,600 --> 01:15:37,280 PREVENTABLE, THE EXPOSURE HAS 2309 01:15:37,280 --> 01:15:38,680 ALREADY OCCURRED, IS IT THE KIND 2310 01:15:38,680 --> 01:15:39,880 OF THING THAT WE WANT TO TELL 2311 01:15:39,880 --> 01:15:41,960 PARENTS SO THEY KNOW THAT ABOUT 2312 01:15:41,960 --> 01:15:43,160 THEIR CHILDREN, IS IT THE KIND 2313 01:15:43,160 --> 01:15:46,320 OF THING THAT A CHILD WOULD 2314 01:15:46,320 --> 01:15:48,200 RATHER LEARN A LITTLE BIT LATER 2315 01:15:48,200 --> 01:15:49,600 IN THEIR LIFE, AND HOW DO WE 2316 01:15:49,600 --> 01:15:50,920 WEIGH THAT KIND OF A PROCESS OF 2317 01:15:50,920 --> 01:15:52,480 A CHILD GROWING FROM A PERSON 2318 01:15:52,480 --> 01:15:54,840 WHO'S NOT ABLE TO PROCESS 2319 01:15:54,840 --> 01:15:57,040 INFORMATION TO AN ADULT WITH A 2320 01:15:57,040 --> 01:15:58,560 SPECTRUM IN BETWEEN, AND HOW DO 2321 01:15:58,560 --> 01:16:00,000 WE GO ABOUT DISCLOSING 2322 01:16:00,000 --> 01:16:00,680 INFORMATION LIKE THAT TO A 2323 01:16:00,680 --> 01:16:01,080 CHILD? 2324 01:16:01,080 --> 01:16:02,280 AND ALSO MAKING SURE THAT THE 2325 01:16:02,280 --> 01:16:04,680 INFORMATION IS RECEIVED IN A WAY 2326 01:16:04,680 --> 01:16:06,680 THAT THE LATER ON THE CHILD 2327 01:16:06,680 --> 01:16:09,720 WOULD HAVE APPRECIATED AND 2328 01:16:09,720 --> 01:16:14,440 APPROVED AN AS AN ADULT. 2329 01:16:14,440 --> 01:16:18,320 >>ANY OTHER QUESTIONS? 2330 01:16:18,320 --> 01:16:23,240 GO AHEAD. 2331 01:16:23,240 --> 01:16:27,360 >> 2332 01:16:27,360 --> 01:16:36,880 [SPEAKING SPANISH] 2333 01:16:36,880 --> 01:16:39,360 >>HOW WOULD WE BE MORE 2334 01:16:39,360 --> 01:16:40,800 INCLUSIVE OF PARTICIPANTS FROM 2335 01:16:40,800 --> 01:16:43,680 DIFFERENT GENERATIONS AND 2336 01:16:43,680 --> 01:16:49,000 CULTURE AND LANGUAGE OR SPEAK 2337 01:16:49,000 --> 01:16:53,200 OTHER IDIOMS? 2338 01:16:53,200 --> 01:16:54,480 >>COULD YOU JUST SAY THAT AGAIN 2339 01:16:54,480 --> 01:16:55,600 A LITTLE BIT LOUDER? 2340 01:16:55,600 --> 01:16:58,560 SORRY. 2341 01:16:58,560 --> 01:17:01,680 >>HOW CAN WE BE MORE INCLUSIVE 2342 01:17:01,680 --> 01:17:05,640 OF PARTICIPANTS FROM DIFFERENT 2343 01:17:05,640 --> 01:17:08,160 GENERATIONS, CULTURE, AND 2344 01:17:08,160 --> 01:17:10,560 LANGUAGE IN THE PROCESS OF 2345 01:17:10,560 --> 01:17:11,320 REPORT-BACK? 2346 01:17:11,320 --> 01:17:15,600 >>TRULY WONDERFUL QUESTION. 2347 01:17:15,600 --> 01:17:17,320 SO THERE'S A BIG ISSUE HERE FOR 2348 01:17:17,320 --> 01:17:19,120 DISPARITY AND EQUITY, RIGHT? 2349 01:17:19,120 --> 01:17:20,840 THAT'S ACTUALLY MY LAST SLIDE. 2350 01:17:20,840 --> 01:17:21,920 I DIDN'T GET A CHANCE TO GET 2351 01:17:21,920 --> 01:17:24,640 THERE. 2352 01:17:24,640 --> 01:17:26,000 BUT INFORMATION LIKE THIS CAN BE 2353 01:17:26,000 --> 01:17:29,040 ESPECIALLY HELPFUL TO PEOPLE WHO 2354 01:17:29,040 --> 01:17:33,080 DON'T HAVE ACCESS TO, YOU KNOW, 2355 01:17:33,080 --> 01:17:35,360 STANDARD THINGS, RIGHT? 2356 01:17:35,360 --> 01:17:38,320 SO IF I DON'T HAVE ACCESS TO 2357 01:17:38,320 --> 01:17:39,800 REGULARLY SEEING A PEDIATRICIAN, 2358 01:17:39,800 --> 01:17:40,960 FINDING OUT FROM A RESEARCH 2359 01:17:40,960 --> 01:17:42,520 STUDY THAT MY CHILD HAS HIGH 2360 01:17:42,520 --> 01:17:44,240 BLOOD PRESSURE, THAT COULD BE -- 2361 01:17:44,240 --> 01:17:45,840 THAT COULD CREATE AN OPPORTUNITY 2362 01:17:45,840 --> 01:17:51,560 THAT WASN'T THERE BEFORE, RIGHT? 2363 01:17:51,560 --> 01:17:54,320 BUT THAT OPPORTUNITY IS MISSED 2364 01:17:54,320 --> 01:17:55,800 IF THE PERSON WHO RECEIVES THE 2365 01:17:55,800 --> 01:17:56,720 INFORMATION DOESN'T HAVE THE 2366 01:17:56,720 --> 01:17:58,440 ABILITY TO TAKE ACTION TO 2367 01:17:58,440 --> 01:18:00,640 ACTUALLY TURN THAT INTO A 2368 01:18:00,640 --> 01:18:01,560 BENEFIT. 2369 01:18:01,560 --> 01:18:03,040 SO IF I FIND OUT THE AIR QUALITY 2370 01:18:03,040 --> 01:18:05,360 INSIDE MY RESIDENCE IS BAD, 2371 01:18:05,360 --> 01:18:08,840 THEN -- BUT I DON'T HAVE THE 2372 01:18:08,840 --> 01:18:10,480 RESOURCES TO BUY AN AIR FILTER 2373 01:18:10,480 --> 01:18:12,040 OR OTHER KIND OF MITIGATING 2374 01:18:12,040 --> 01:18:15,080 THING OR MOVE, THEN I'VE NOW 2375 01:18:15,080 --> 01:18:16,280 SORT OF EXPERIENCED A VERY 2376 01:18:16,280 --> 01:18:18,240 DIFFICULT SITUATION. 2377 01:18:18,240 --> 01:18:19,560 BECAUSE I GOT INFORMATION I 2378 01:18:19,560 --> 01:18:21,520 COULDN'T ACT ON. 2379 01:18:21,520 --> 01:18:25,360 AND I THINK IT'S PROBABLY 2380 01:18:25,360 --> 01:18:26,680 IMPORTANT TO SAY BUT MAYBE COULD 2381 01:18:26,680 --> 01:18:28,080 GO WITHOUT SAYING THAT, YOU 2382 01:18:28,080 --> 01:18:29,640 KNOW, THIS INFORMATION IS NOT 2383 01:18:29,640 --> 01:18:31,240 COMMUNICATED IN A LANGUAGE 2384 01:18:31,240 --> 01:18:32,800 THAT'S SUCCESSFUL BY THE PERSON 2385 01:18:32,800 --> 01:18:35,000 WHO'S RECEIVING IT, THAT'S NOT 2386 01:18:35,000 --> 01:18:36,200 THEIR PREFERRED LANGUAGE, AND IF 2387 01:18:36,200 --> 01:18:40,840 IT'S NOT RETURNED IN A WAY 2388 01:18:40,840 --> 01:18:42,480 THAT'S CULTURALLY -- NOT 2389 01:18:42,480 --> 01:18:43,720 CULTURALLY SENSITIVE BUT AT 2390 01:18:43,720 --> 01:18:45,160 LEAST, YOU KNOW, WITH THE 2391 01:18:45,160 --> 01:18:46,520 UNDERSTANDING OF WHAT THE 2392 01:18:46,520 --> 01:18:47,360 CULTURAL IMPACT OF THAT 2393 01:18:47,360 --> 01:18:49,880 INFORMATION MIGHT BE, THEN IT'S 2394 01:18:49,880 --> 01:18:51,600 NOT GOING TO BE HELPFUL, RIGHT? 2395 01:18:51,600 --> 01:18:55,320 IT REALLY -- THAT IS A 2396 01:18:55,320 --> 01:18:56,640 PRE-CONDITION FOR ANY BENEFIT 2397 01:18:56,640 --> 01:18:57,440 OCCURRING, IS FOR INFORMATION TO 2398 01:18:57,440 --> 01:19:01,360 BE RETURNED IN A WAY THAT CAN BE 2399 01:19:01,360 --> 01:19:02,200 UNDERSTOOD AND MEETS THE NEEDS 2400 01:19:02,200 --> 01:19:09,200 OF THE PERSON RECEIVING IT. 2401 01:19:09,200 --> 01:19:11,400 >>I THINK FOR THE PURPOSES OF 2402 01:19:11,400 --> 01:19:13,240 TIME WE'LL TRY TO GO AHEAD AND 2403 01:19:13,240 --> 01:19:13,640 MOVE ON. 2404 01:19:13,640 --> 01:19:14,440 SO THANK YOU, KYLE. 2405 01:19:14,440 --> 01:19:15,920 WE'LL GO AHEAD AND HEAR FROM 2406 01:19:15,920 --> 01:19:26,200 ADAM BERGER NOW. 2407 01:19:32,320 --> 01:19:33,960 >>I JUST WANT TO SAY THANKS TO 2408 01:19:33,960 --> 01:19:35,360 CLAY, MATT AND THE ENTIRETY OF 2409 01:19:35,360 --> 01:19:36,760 THE ORGANIZERS TO INVITING ME. 2410 01:19:36,760 --> 01:19:38,200 IT'S A REAL PLEASURE TO BE HERE 2411 01:19:38,200 --> 01:19:39,960 TODAY WITH ALL OF YOU. 2412 01:19:39,960 --> 01:19:41,400 THERE ARE A FEW THINGS I WAS 2413 01:19:41,400 --> 01:19:43,000 ASKED TO SPEAK ABOUT, AND THIS 2414 01:19:43,000 --> 01:19:44,400 IS REALLY THE LEGAL AND 2415 01:19:44,400 --> 01:19:46,880 REGULATORY ASPECTS OF RETURN OF 2416 01:19:46,880 --> 01:19:47,800 RESEARCH RESULTS AND I DO NEED 2417 01:19:47,800 --> 01:19:49,320 TO STATE THAT I'M NEITHER A 2418 01:19:49,320 --> 01:19:50,960 LAWYER NOR AM I A REGULATOR 2419 01:19:50,960 --> 01:19:51,440 ANYMORE. 2420 01:19:51,440 --> 01:19:52,720 SO JUST KEEP THAT IN MIND, I'M 2421 01:19:52,720 --> 01:19:58,520 NOT PROVIDING ANY OFFICIAL 2422 01:19:58,520 --> 01:19:58,960 ADVICE HERE. 2423 01:19:58,960 --> 01:20:00,600 THE OTHER THING I WANTED TO ALSO 2424 01:20:00,600 --> 01:20:02,720 MENTION IS I'M NOT GOING TO HAVE 2425 01:20:02,720 --> 01:20:04,520 AN OPPORTUNITY TO GO THROUGH IN 2426 01:20:04,520 --> 01:20:05,760 GREAT DETAIL, SO YOU'RE GOING TO 2427 01:20:05,760 --> 01:20:06,840 GET A PRETTY HIGH LEVEL 2428 01:20:06,840 --> 01:20:07,120 OVERVIEW. 2429 01:20:07,120 --> 01:20:08,800 I HAVE TRIED TO PUT THINGS 2430 01:20:08,800 --> 01:20:10,240 INSIDE THE DECK ITSELF SO YOU'LL 2431 01:20:10,240 --> 01:20:12,520 SEE LINKS BELOW IN DIFFERENT 2432 01:20:12,520 --> 01:20:12,720 SPOTS. 2433 01:20:12,720 --> 01:20:13,840 SO THAT IF YOU WANTED TO GO 2434 01:20:13,840 --> 01:20:15,160 BACK, YOU CAN LEARN MORE, READ 2435 01:20:15,160 --> 01:20:16,800 ABOUT DIFFERENT PARTS OF THIS. 2436 01:20:16,800 --> 01:20:17,920 SO COULD YOU GO TO THE NEXT 2437 01:20:17,920 --> 01:20:19,440 SLIDE, PLEASE? 2438 01:20:19,440 --> 01:20:20,600 GREAT. 2439 01:20:20,600 --> 01:20:21,840 SO THE OVERVIEW OF THE TALK IS 2440 01:20:21,840 --> 01:20:23,640 GOING TO FOLLOW ESSENTIALLY 2441 01:20:23,640 --> 01:20:26,880 WALKING THROUGH A NUMBER OF LAWS 2442 01:20:26,880 --> 01:20:27,880 AND REGULATIONS THAT ARE 2443 01:20:27,880 --> 01:20:29,680 RELEVANT HERE, ESPECIALLY AS IT 2444 01:20:29,680 --> 01:20:30,720 APPLIES TO RETURN OF INDIVIDUAL 2445 01:20:30,720 --> 01:20:31,720 LEVEL RESEARCH RESULTS. 2446 01:20:31,720 --> 01:20:34,520 THEN HOW WE'RE ACTUALLY MOVING 2447 01:20:34,520 --> 01:20:35,800 MORE TOWARDS A PARTICIPATORY 2448 01:20:35,800 --> 01:20:36,320 RESEARCH MODEL. 2449 01:20:36,320 --> 01:20:37,320 YOU'VE HEARD A LITTLE BIT ABOUT 2450 01:20:37,320 --> 01:20:38,680 THIS IN EACH OF THE PRECEDING 2451 01:20:38,680 --> 01:20:39,640 TALKS AS WELL AS SOME OF THE 2452 01:20:39,640 --> 01:20:40,280 INTRODUCTIONS THAT PEOPLE HAD 2453 01:20:40,280 --> 01:20:41,240 AROUND THE ROOM. 2454 01:20:41,240 --> 01:20:42,680 AND THEN OUR ROLE HERE AT NIH 2455 01:20:42,680 --> 01:20:43,960 AND WHAT WE'RE TRYING TO DO WITH 2456 01:20:43,960 --> 01:20:45,840 RETURN OF RESEARCH RESULTS 2457 01:20:45,840 --> 01:20:47,600 THEMSELVES, AND FINALLY, SOME 2458 01:20:47,600 --> 01:20:49,000 NEEDS AND OPPORTUNITIES THAT WE 2459 01:20:49,000 --> 01:20:49,600 THINK THERE ARE IN THE 2460 01:20:49,600 --> 01:20:50,360 COMMUNITY. 2461 01:20:50,360 --> 01:20:53,520 AT THE MOMENT. 2462 01:20:53,520 --> 01:20:54,080 ALL RIGHT. 2463 01:20:54,080 --> 01:20:55,600 SO SOME OF THE SELECT FEDERAL 2464 01:20:55,600 --> 01:20:57,120 LAWS AND REGULATIONS, AND I DO 2465 01:20:57,120 --> 01:20:58,240 SAY SELECT JUST BECAUSE THERE'S 2466 01:20:58,240 --> 01:20:59,960 A LOT OF OTHER LAWS AND 2467 01:20:59,960 --> 01:21:01,400 REGULATIONS THAT APPLY MORE 2468 01:21:01,400 --> 01:21:03,480 BROADLY, BUT JUST TO GIVE A HIGH 2469 01:21:03,480 --> 01:21:04,560 LEVEL CONCEPT OF SOME OF THE 2470 01:21:04,560 --> 01:21:06,120 ONES THAT I SEE AS REALLY 2471 01:21:06,120 --> 01:21:07,520 IMPORTANT, SO THE CLINICAL 2472 01:21:07,520 --> 01:21:08,480 LABORATORY IMPROVEMENT 2473 01:21:08,480 --> 01:21:10,120 AMENDMENTS OF 1988, ALSO KNOWN 2474 01:21:10,120 --> 01:21:11,520 AS CLIA, AND YOU'LL HEAR ME 2475 01:21:11,520 --> 01:21:13,520 REFER TO THAT AS SUCH FROM HERE 2476 01:21:13,520 --> 01:21:17,040 ON OUT, SEVERAL SELECT FDA 2477 01:21:17,040 --> 01:21:18,040 REGULATIONS, THE HEALTH 2478 01:21:18,040 --> 01:21:19,760 INSURANCE PORTABILITY AND 2479 01:21:19,760 --> 01:21:21,520 ACCOUNTABILITY ACT ALSO KNOWN AS 2480 01:21:21,520 --> 01:21:22,960 HIPAA, AND FINALLY THE COMMON 2481 01:21:22,960 --> 01:21:24,160 RULE ITSELF. 2482 01:21:24,160 --> 01:21:25,600 SO CAN YOU GO TO THE NEXT SLIDE, 2483 01:21:25,600 --> 01:21:26,880 PLEASE. 2484 01:21:26,880 --> 01:21:27,360 ALL RIGHT. 2485 01:21:27,360 --> 01:21:28,320 SO WE'RE GOING TO START OUT WITH 2486 01:21:28,320 --> 01:21:30,000 THE CLIA LAW ITSELF. 2487 01:21:30,000 --> 01:21:31,480 THE LAW WAS REALLY AN AMENDMENT 2488 01:21:31,480 --> 01:21:33,600 TO THE PUBLIC HEALTH SERVICES 2489 01:21:33,600 --> 01:21:35,280 ACT, AND -- WHICH WAS REALLY TO 2490 01:21:35,280 --> 01:21:36,320 REVISE TO INCLUDE A FEDERAL 2491 01:21:36,320 --> 01:21:38,080 PROGRAM FOR CERTIFICATION AND 2492 01:21:38,080 --> 01:21:40,360 OVERSIGHT OF CLINICAL LABORATORY 2493 01:21:40,360 --> 01:21:40,840 TESTING. 2494 01:21:40,840 --> 01:21:42,520 IN ADDITION TO THE LAW, YOU 2495 01:21:42,520 --> 01:21:43,920 ACTUALLY HAVE THE IMPLEMENTING 2496 01:21:43,920 --> 01:21:48,280 RELG REGULATIONS AND THOSE REALT 2497 01:21:48,280 --> 01:21:49,800 THE STANDARDS FOR ENSURE 2498 01:21:49,800 --> 01:21:51,000 RELIABILITY OF LAB TESTS 2499 01:21:51,000 --> 01:21:52,880 SPECIFIC TO HUMAN SPENCE MENS 2500 01:21:52,880 --> 01:21:54,600 FOR HEALTH ASSESSMENT OR TO 2501 01:21:54,600 --> 01:21:55,400 DIAGNOSE, PREVENT OR TREAT 2502 01:21:55,400 --> 01:21:55,920 DISEASE. 2503 01:21:55,920 --> 01:21:57,160 NOW THE THING THAT I WANT TO 2504 01:21:57,160 --> 01:21:58,440 REALLY MAKE CLEAR HERE, THOUGH, 2505 01:21:58,440 --> 01:22:00,840 IS THAT CLIA REALLY SETS A 2506 01:22:00,840 --> 01:22:04,280 MINIMUM BAR FOR RETURN OF 2507 01:22:04,280 --> 01:22:04,600 INFORMATION. 2508 01:22:04,600 --> 01:22:05,920 IT'S MEANT TO BE PROTECTIVE OF 2509 01:22:05,920 --> 01:22:07,320 PATIENTS SO THEY'RE GETTING 2510 01:22:07,320 --> 01:22:08,320 RELIABLE AND ACCURATE 2511 01:22:08,320 --> 01:22:08,880 INFORMATION. 2512 01:22:08,880 --> 01:22:10,520 CLIA ITSELF AND THE REGULATIONS 2513 01:22:10,520 --> 01:22:12,280 ACTUALLY SET OUT A LARGE NUMBER 2514 01:22:12,280 --> 01:22:13,800 OF REQUIREMENTS HERE FOR 2515 01:22:13,800 --> 01:22:16,440 PERSONNEL TRAINING, ESTABLISHING 2516 01:22:16,440 --> 01:22:18,520 OF TEST VALIDITY, SPECIMEN 2517 01:22:18,520 --> 01:22:20,560 TRACKING, TEST PERFORMANCE 2518 01:22:20,560 --> 01:22:22,480 ASSESSMENT, AND A BUNCH OF OTHER 2519 01:22:22,480 --> 01:22:23,000 REQUIREMENTS. 2520 01:22:23,000 --> 01:22:24,240 AND LIKE I SAID, IT'S ALL TO 2521 01:22:24,240 --> 01:22:26,720 MAKE SURE THAT YOU'RE GETTING 2522 01:22:26,720 --> 01:22:28,160 RELIABLE ANALYTICALLY VALID 2523 01:22:28,160 --> 01:22:28,800 RESULTS AND THAT THOSE RESULTS 2524 01:22:28,800 --> 01:22:33,640 ARE GOING TO THE RIGHT PERSON. 2525 01:22:33,640 --> 01:22:35,400 SO THERE'S A BIT OF A TRIFECTA 2526 01:22:35,400 --> 01:22:38,800 HERE IN HOW CLIA IS OVERSEEN, 2527 01:22:38,800 --> 01:22:42,200 IT'S ACTUALLY OVERSEEN BY CMS, 2528 01:22:42,200 --> 01:22:44,080 FDA AND CDC, EACH HAVE VARYING 2529 01:22:44,080 --> 01:22:46,120 ROLES AS IT COMES TO CLIA 2530 01:22:46,120 --> 01:22:46,800 ITSELF. 2531 01:22:46,800 --> 01:22:48,720 SO THESE ARE LARGELY LISTED 2532 01:22:48,720 --> 01:22:49,520 HERE. 2533 01:22:49,520 --> 01:22:51,800 I'M NOT GOING TO GO THROUGH ALL 2534 01:22:51,800 --> 01:22:52,920 THESE TO SAVE TIME BUT YOU CAN 2535 01:22:52,920 --> 01:22:56,760 READ THEM AT YOUR LEISURE. 2536 01:22:56,760 --> 01:23:01,680 CMS IS THE MAIN PLAYER, ISSUING 2537 01:23:01,680 --> 01:23:05,400 CERTIFICATES, MONITORING PR 2538 01:23:05,400 --> 01:23:06,960 PRACTICE, REALLY RESPONSIBLE FOR 2539 01:23:06,960 --> 01:23:08,040 RULES AND REGULATIONS THAT COME 2540 01:23:08,040 --> 01:23:08,560 INTO PLAY. 2541 01:23:08,560 --> 01:23:10,440 FDA IS THE ONE THAT SETS THE 2542 01:23:10,440 --> 01:23:12,280 COMPLEXITY TESTING, THEY 2543 01:23:12,280 --> 01:23:13,280 CATEGORIZE EACH TEST AND THAT 2544 01:23:13,280 --> 01:23:14,480 WILL COME INTO MORE CLARITY HERE 2545 01:23:14,480 --> 01:23:15,680 AS I CONTINUE. 2546 01:23:15,680 --> 01:23:18,000 AND CDC REALLY DOES A LOT OF 2547 01:23:18,000 --> 01:23:19,640 TECHNICAL STANDARD DEVELOPMENT, 2548 01:23:19,640 --> 01:23:24,120 LABORATORY PRACTICE GUIDELINES, 2549 01:23:24,120 --> 01:23:24,920 MONITORING, AS WELL AS 2550 01:23:24,920 --> 01:23:26,400 PLANNAGING SOME OF THE ADVISORY 2551 01:23:26,400 --> 01:23:27,040 COMMITTEES THAT ACTUALLY 2552 01:23:27,040 --> 01:23:29,160 FUNCTION IN THIS SPACE. 2553 01:23:29,160 --> 01:23:30,240 SO IMPORTANTLY FOR WHAT WE'RE 2554 01:23:30,240 --> 01:23:31,360 TALKING ABOUT, WE'RE REALLY 2555 01:23:31,360 --> 01:23:32,800 LOOKING AT RETURN OF RESEARCH 2556 01:23:32,800 --> 01:23:34,200 RESULTS, SO HOW DOES CLIA 2557 01:23:34,200 --> 01:23:34,960 ACTUALLY INTERSECT WITH 2558 01:23:34,960 --> 01:23:36,400 RESEARCH? 2559 01:23:36,400 --> 01:23:37,640 SO FIRST OF ALL, CLIA ACTUALLY 2560 01:23:37,640 --> 01:23:39,240 APPLIES TO ALL LABS THAT TEST 2561 01:23:39,240 --> 01:23:40,440 HUMAN SPECIMENS FOR THE PURPOSE 2562 01:23:40,440 --> 01:23:43,280 OF PROVIDING INFORMATION FOR THE 2563 01:23:43,280 --> 01:23:44,320 DIAGNOSIS, PREVENTION, OR 2564 01:23:44,320 --> 01:23:45,840 TREATMENT OF ANY DISEASE OR 2565 01:23:45,840 --> 01:23:47,320 IMPAIRMENT OF OR THE ASSESSMENT 2566 01:23:47,320 --> 01:23:49,680 OF THE HEALTH OF HUMAN BEINGS. 2567 01:23:49,680 --> 01:23:51,680 NOW THE WAY THE CLIA ACTUALLY 2568 01:23:51,680 --> 01:23:52,520 DEFINES A LABORATORY IS 2569 01:23:52,520 --> 01:23:54,280 IMPORTANT BECAUSE IT APPLIES -- 2570 01:23:54,280 --> 01:23:55,720 CLIA IS GOING TO AEMPLOY TO 2571 01:23:55,720 --> 01:23:56,040 LABORATORIES. 2572 01:23:56,040 --> 01:23:58,560 SO IF YOU ARE ACTUALLY TAKING 2573 01:23:58,560 --> 01:23:59,840 PATIENT-SPECIFIC RESULTS AND 2574 01:23:59,840 --> 01:24:00,640 THEY'RE REPORTED AND THE RESULTS 2575 01:24:00,640 --> 01:24:01,600 ARE BEING MADE FOR THE PURPOSE 2576 01:24:01,600 --> 01:24:03,040 OF DIAGNOSIS, PREVENTION OR 2577 01:24:03,040 --> 01:24:04,240 TREATMENT AND THE REST OF 2578 01:24:04,240 --> 01:24:05,800 EVERYTHING THAT'S QUOTED UP 2579 01:24:05,800 --> 01:24:07,560 ABOVE IN THE FIRST BULLET, 2580 01:24:07,560 --> 01:24:08,840 YOU'RE A LABORATORY UNDER CLIA. 2581 01:24:08,840 --> 01:24:10,400 SO CLIA REQUIREMENTS ARE GOING 2582 01:24:10,400 --> 01:24:11,080 TO APPLY. 2583 01:24:11,080 --> 01:24:12,200 NOW, THE OTHER THING THAT'S 2584 01:24:12,200 --> 01:24:14,040 IMPORTANT TO NOTE HERE IS THE 2585 01:24:14,040 --> 01:24:15,240 APPLICABILITY ISN'T ACTUALLY 2586 01:24:15,240 --> 01:24:16,160 DEPENDENT ON THE ACTUAL USE OF 2587 01:24:16,160 --> 01:24:17,040 THE RESULTS. 2588 01:24:17,040 --> 01:24:18,440 SO WHETHER YOU USE THOSE RESULTS 2589 01:24:18,440 --> 01:24:19,880 OR YOU DON'T ISN'T REALLY 2590 01:24:19,880 --> 01:24:20,200 IMPORTANT. 2591 01:24:20,200 --> 01:24:23,920 IT'S REALLY ABOUT THE PURPOSE OF 2592 01:24:23,920 --> 01:24:24,280 THE TEST. 2593 01:24:24,280 --> 01:24:26,040 SO IF THE RESULTS COULD BE USED 2594 01:24:26,040 --> 01:24:26,920 FOR DIAGNOSIS, AND I'M GOING TO 2595 01:24:26,920 --> 01:24:28,600 STRESS COULD, IT'S NOT WOULD, 2596 01:24:28,600 --> 01:24:30,200 IT'S COULD, BE USED FOR 2597 01:24:30,200 --> 01:24:31,240 DIAGNOSIS, PREVENTION, AND THE 2598 01:24:31,240 --> 01:24:34,000 REST OF THAT QUOTED TEXT AT THE 2599 01:24:34,000 --> 01:24:35,000 FRONT, THEN YOU'RE ACTUALLY 2600 01:24:35,000 --> 01:24:38,520 SUBJECT TO CLIA REQUIREMENTS. 2601 01:24:38,520 --> 01:24:40,280 AS I MENTIONED, FDA ACTUALLY 2602 01:24:40,280 --> 01:24:42,040 SETS THE CATEGORIES FOR ALL OF 2603 01:24:42,040 --> 01:24:43,440 THE TESTS THEMSELVES. 2604 01:24:43,440 --> 01:24:45,080 RESEARCH TESTS THAT ARE NOT 2605 01:24:45,080 --> 01:24:46,200 APPROVED OR CLEARED BY FDA ARE 2606 01:24:46,200 --> 01:24:47,400 GOING TO BE CONSIDERED BY 2607 01:24:47,400 --> 01:24:49,360 DEFAULT TO BE HIGH COMPLEXITY. 2608 01:24:49,360 --> 01:24:50,480 SO REPORT TO REMEMBER THIS. 2609 01:24:50,480 --> 01:24:53,360 I'LL COME BACK TO IT LATER ON. 2610 01:24:53,360 --> 01:24:54,520 BUT THE PURPOSE HERE IS REALLY 2611 01:24:54,520 --> 01:24:56,400 THAT WHEN YOU ACTUALLY HAVE THIS 2612 01:24:56,400 --> 01:24:58,280 TYPE OF RESEARCH TEST, IT'S 2613 01:24:58,280 --> 01:24:59,280 GOING TO SET THE REQUIREMENTS 2614 01:24:59,280 --> 01:25:01,120 THAT ARE GOING TO APPLY. 2615 01:25:01,120 --> 01:25:02,120 THE TYPE OF CERTIFICATE YOU'RE 2616 01:25:02,120 --> 01:25:06,280 GOING TO HAVE TO APPLY FOR AND 2617 01:25:06,280 --> 01:25:07,680 RECEIVE, THE PERSONNEL AND 2618 01:25:07,680 --> 01:25:08,320 DOCUMENTARY REQUIREMENTS THAT 2619 01:25:08,320 --> 01:25:09,520 ARE GOING TO COME INTO PLAY, AS 2620 01:25:09,520 --> 01:25:11,760 WELL AS THE REQUIREMENTS FOR 2621 01:25:11,760 --> 01:25:12,840 CONSTANT SURVEILLING OF THE 2622 01:25:12,840 --> 01:25:13,520 LABS. 2623 01:25:13,520 --> 01:25:16,440 I AND I DON'T MEAN CONSTANT BUT 2624 01:25:16,440 --> 01:25:17,560 THE ANNUAL STANDARDS THEY 2625 01:25:17,560 --> 01:25:18,640 ACTUALLY GO THROUGH WHEN THEY 2626 01:25:18,640 --> 01:25:19,960 COME OUT AND SURVEY. 2627 01:25:19,960 --> 01:25:21,840 SO THERE IS A RESEARCH EXCEPTION 2628 01:25:21,840 --> 01:25:24,520 BUILT IN TO CLIA THAT ONLY 2629 01:25:24,520 --> 01:25:25,960 APPLIES WHEN THE RESEARCH LABS 2630 01:25:25,960 --> 01:25:27,960 DO NOT REPORT PATIENT-SPECIFIC 2631 01:25:27,960 --> 01:25:28,840 RESULTS. 2632 01:25:28,840 --> 01:25:30,280 THE SECOND YOU REPORT 2633 01:25:30,280 --> 01:25:31,480 PATIENT-SPECIFIC RESULTS, YOU 2634 01:25:31,480 --> 01:25:32,920 HAVE NOW ADDED CLIA REQUIREMENTS 2635 01:25:32,920 --> 01:25:34,120 ON TOP OF YOURSELF. 2636 01:25:34,120 --> 01:25:35,960 SO IT IS A SELF-DETERMINATION IN 2637 01:25:35,960 --> 01:25:38,080 MANY WAYS. 2638 01:25:38,080 --> 01:25:39,520 AND I'D BE REMISS IF I DIDN'T 2639 01:25:39,520 --> 01:25:40,680 MENTION HERE THAT THERE IS AN 2640 01:25:40,680 --> 01:25:43,960 OPEN QUESTION AS TO WHETHER A 2641 01:25:43,960 --> 01:25:45,120 RESEARCH LAB CAN AND SHOULD 2642 01:25:45,120 --> 01:25:46,000 ACTUALLY HAVE TO MEET THESE 2643 01:25:46,000 --> 01:25:47,400 REQUIREMENTS TO BE ABLE TO 2644 01:25:47,400 --> 01:25:48,600 RETURN. 2645 01:25:48,600 --> 01:25:50,000 I WON'T WADE INTO THAT BUT IT IS 2646 01:25:50,000 --> 01:25:54,520 A STRONG DEBATE IN THE FIELD. 2647 01:25:54,520 --> 01:25:55,640 NOW, THE OTHER THING TO REMEMBER 2648 01:25:55,640 --> 01:25:57,480 ABOUT CLIA IS IT APPLIES TO 2649 01:25:57,480 --> 01:25:58,440 HUMAN SPECIMEN TESTING. 2650 01:25:58,440 --> 01:25:59,560 SO THAT MEANS THAT IF YOU'RE 2651 01:25:59,560 --> 01:26:01,440 GOING TO TEST FOR LIKE AIR 2652 01:26:01,440 --> 01:26:02,920 QUALITY OR WATER QUALITY OR 2653 01:26:02,920 --> 01:26:07,120 YOU'RE GOING TO LOOK AT 2654 01:26:07,120 --> 01:26:07,920 ENVIRONMENTAL -- LIKE VEGETATION 2655 01:26:07,920 --> 01:26:09,320 OR SOIL, WE'RE NOT GOING TO BE 2656 01:26:09,320 --> 01:26:10,760 TALKING ABOUT CLIA REGULATION 2657 01:26:10,760 --> 01:26:11,120 ANYMORE. 2658 01:26:11,120 --> 01:26:12,840 BUT THERE IS A FINE LINE HERE 2659 01:26:12,840 --> 01:26:14,360 BECAUSE IF YOU'RE TESTING, FOR 2660 01:26:14,360 --> 01:26:16,000 INSTANCE, SOIL, YOU'RE LOOKING 2661 01:26:16,000 --> 01:26:17,360 AT CHEMICALS IN IT, NOT CLIA. 2662 01:26:17,360 --> 01:26:19,080 IF YOU'RE LOOKING AT HUMAN 2663 01:26:19,080 --> 01:26:21,400 SPECIMENS AND YOU'RE TESTING FOR 2664 01:26:21,400 --> 01:26:22,400 PURPOSES YOU ARE LOOKING AT 2665 01:26:22,400 --> 01:26:22,960 CLIA. 2666 01:26:22,960 --> 01:26:26,120 SO THERE'S KN NUANCES TO ALL THE 2667 01:26:26,120 --> 01:26:26,360 THINGS. 2668 01:26:26,360 --> 01:26:28,200 WHAT I WANTED TO POINT OUT, CLIA 2669 01:26:28,200 --> 01:26:29,600 ALSO DOESN'T APPLY TO IMAGING. 2670 01:26:29,600 --> 01:26:31,360 SO IF YOU'RE TALKING ABOUT 2671 01:26:31,360 --> 01:26:33,120 MRIs OR CT SCANS OR OTHER 2672 01:26:33,120 --> 01:26:35,200 TYPES OF IMAGING, THAT'S NOT 2673 01:26:35,200 --> 01:26:40,560 GOING TO BE CLIA. 2674 01:26:40,560 --> 01:26:41,560 BUT, THAT DOESN'T NECESSARILY 2675 01:26:41,560 --> 01:26:43,640 MEAN THAT TESTING HUMAN 2676 01:26:43,640 --> 01:26:45,640 SPECIMENS INCLUDING UNDER 2677 01:26:45,640 --> 01:26:47,040 IMAGING ISN'T SUBJECT TO OTHER 2678 01:26:47,040 --> 01:26:48,680 REGULATIONS AND THE SAME THING 2679 01:26:48,680 --> 01:26:50,400 WITH NON-HUMAN SPECIMENS. 2680 01:26:50,400 --> 01:26:51,720 THERE ARE ALL SORTS OF OTHER 2681 01:26:51,720 --> 01:26:53,200 REGULATIONS THAT APPLY ACROSS 2682 01:26:53,200 --> 01:26:54,200 THE ENTIRETY OF THE U.S. 2683 01:26:54,200 --> 01:26:55,800 GOVERNMENT THAT HAVE BEEN 2684 01:26:55,800 --> 01:26:57,000 PROMULGATED SO YOU REALLY HAVE 2685 01:26:57,000 --> 01:27:01,080 TO KNOW HOW THOSE REGULATIONS 2686 01:27:01,080 --> 01:27:02,280 COME AND HOW THEY APPLY TO YOU. 2687 01:27:02,280 --> 01:27:03,720 SOME OF THOSE REGULATIONS 2688 01:27:03,720 --> 01:27:08,560 ACTUALLY ARE OVERSEEN BY FDA. 2689 01:27:08,560 --> 01:27:10,600 SO FDA ACTUALLY REGULATES BOTH 2690 01:27:10,600 --> 01:27:11,920 MANUFACTURERS OF MEDICAL 2691 01:27:11,920 --> 01:27:13,240 PRODUCTS, THAT INCLUDES 2692 01:27:13,240 --> 01:27:15,240 BIOLOGICS, THAT INCLUDES DRUGS, 2693 01:27:15,240 --> 01:27:16,640 INCLUDES DEVICES, AND ALL THIS 2694 01:27:16,640 --> 01:27:19,480 IS UNDER THE FEDERAL FOOD, FOOD, 2695 01:27:19,480 --> 01:27:19,960 DRUG AND COSMETIC ACT. 2696 01:27:19,960 --> 01:27:21,160 THE PURPOSE HERE IS TOE RAO I 2697 01:27:21,160 --> 01:27:22,680 ARE ENSURE -- I'M GOING TO FOCUS 2698 01:27:22,680 --> 01:27:27,960 ON DEVAS DEVICES ARE REASONABLYE 2699 01:27:27,960 --> 01:27:29,600 AND EFFECTIVE. 2700 01:27:29,600 --> 01:27:31,680 YOU'RE ACTUALLY ABLE TO DETECT 2701 01:27:31,680 --> 01:27:33,040 THE THING YOU CLAIM TO DETECT 2702 01:27:33,040 --> 01:27:34,280 AND THAT YOU ARE ACTUALLY -- 2703 01:27:34,280 --> 01:27:35,640 THAT THE THING YOU DETECT 2704 01:27:35,640 --> 01:27:38,400 ACTUALLY IS MEANINGFUL FOR 2705 01:27:38,400 --> 01:27:38,800 HEALTH. 2706 01:27:38,800 --> 01:27:39,680 OR THE CONDITION OR DISEASE 2707 01:27:39,680 --> 01:27:40,760 THAT'S ACTUALLY UNDER 2708 01:27:40,760 --> 01:27:41,080 INVESTIGATION. 2709 01:27:41,080 --> 01:27:42,640 NOW THAT DOES INCLUDE DEVICES 2710 01:27:42,640 --> 01:27:44,760 THAT ARE INTENDED FOR THE USE OF 2711 01:27:44,760 --> 01:27:46,840 DIAGNOSIS OF DISEASE AND OTHER 2712 01:27:46,840 --> 01:27:47,720 CONDITIONS AND FOR THE 2713 01:27:47,720 --> 01:27:48,600 MITIGATION, TREATMENT AND 2714 01:27:48,600 --> 01:27:49,120 PREVENTION OF DISEASE. 2715 01:27:49,120 --> 01:27:50,360 YOU CAN SEE THE CORRELATIONS 2716 01:27:50,360 --> 01:27:52,560 BACK TO HOW CLIA APPLIES. 2717 01:27:52,560 --> 01:27:53,920 SO FDA DOES REGULATE ALL OF 2718 01:27:53,920 --> 01:27:56,600 THOSE TYPES OF TESTS THEMSELVES. 2719 01:27:56,600 --> 01:27:57,960 THE PURPOSE HERE, YOU KNOW, AS I 2720 01:27:57,960 --> 01:27:59,840 SAID IS REALLY TO MAKE SURE THAT 2721 01:27:59,840 --> 01:28:02,120 WHAT YOU'RE ACTUALLY GETTING IS 2722 01:28:02,120 --> 01:28:03,560 ACCURATE INFORMATION. 2723 01:28:03,560 --> 01:28:05,520 I'M ONLY GOING TO FOCUS ON TWO 2724 01:28:05,520 --> 01:28:07,400 SPECIFIC ASPECTS OF FDA 2725 01:28:07,400 --> 01:28:08,440 REGULATION, THERE'S A LOT OF 2726 01:28:08,440 --> 01:28:10,640 OTHER PARTS OF THE FDA 2727 01:28:10,640 --> 01:28:11,880 REGULATORY SCHEME THAT DOES 2728 01:28:11,880 --> 01:28:13,360 APPLY TO TESTING AND DEVELOPMENT 2729 01:28:13,360 --> 01:28:15,400 OF RESEARCH. 2730 01:28:15,400 --> 01:28:16,840 BUT I'M GOING TO ONLY CHOOSE TWO 2731 01:28:16,840 --> 01:28:19,040 OF THESE JUST FOR TIME AND THOSE 2732 01:28:19,040 --> 01:28:20,440 ARE LABORATORY DEVELOPED TESTS 2733 01:28:20,440 --> 01:28:23,240 ALSO KNOWN AS LDTs, AND THE 2734 01:28:23,240 --> 01:28:24,320 INVESTIGATIONAL DEVICE 2735 01:28:24,320 --> 01:28:27,600 EXEMPTIONS ALSO KNOWN AS IDEs. 2736 01:28:27,600 --> 01:28:28,680 LDTs AS I MENTIONED EARLIER, 2737 01:28:28,680 --> 01:28:32,080 YOU KNOW, IF YOU HAVE NOT 2738 01:28:32,080 --> 01:28:33,440 ACTUALLY HAD YOUR TEST APPROVED 2739 01:28:33,440 --> 01:28:35,560 OR CLEARED BY FDA, YOU'RE LIKELY 2740 01:28:35,560 --> 01:28:37,240 GOING TO FALL WITHIN THE SCOPE 2741 01:28:37,240 --> 01:28:38,920 OF AN LDT. 2742 01:28:38,920 --> 01:28:40,480 THAT MEANS YOU'RE LOOKING AT AN 2743 01:28:40,480 --> 01:28:43,280 IN VITRO DIAGNOSTIC TEST WITHIN 2744 01:28:43,280 --> 01:28:45,240 A SINGLE LAB, THAT IS SUBJECT TO 2745 01:28:45,240 --> 01:28:46,120 REGULATORY OVERSIGHT BY FDA. 2746 01:28:46,120 --> 01:28:47,680 SO THINK ABOUT ALL THE MOLECULAR 2747 01:28:47,680 --> 01:28:49,080 TESTING WE'VE BEEN TALKING ABOUT 2748 01:28:49,080 --> 01:28:50,880 GENETICS AND GENOMICS A LOT SO 2749 01:28:50,880 --> 01:28:52,080 THAT'S KIND OF WHERE THIS IS 2750 01:28:52,080 --> 01:28:53,400 TAILORED TO, BUT ALL OF THOSE 2751 01:28:53,400 --> 01:28:55,320 TYPES OF IN VITRO DIAGNOSTIC 2752 01:28:55,320 --> 01:28:56,720 ASSAYS ARE GOING TO BE REGULATED 2753 01:28:56,720 --> 01:28:59,000 BY FDA, BUT THEY'RE CONSIDERED 2754 01:28:59,000 --> 01:29:00,040 LABORATORY DEVELOPED TESTS. 2755 01:29:00,040 --> 01:29:01,560 NOW THAT DOES HAVE IMPLICATIONS 2756 01:29:01,560 --> 01:29:07,600 BECAUSE THAT MEANS, AS I SAID 2757 01:29:07,600 --> 01:29:11,640 BEFORE, CONSIDERED HIGH 2758 01:29:11,640 --> 01:29:16,080 COMPLEXITY, HIGHEST STRINGENCY 2759 01:29:16,080 --> 01:29:17,560 OF REQUIREMENTS UNDER CLIA. 2760 01:29:17,560 --> 01:29:19,200 BECAUSE THEY'RE EXPERIMENTAL 2761 01:29:19,200 --> 01:29:22,920 TESTS, THEY DON'T REALLY 2762 01:29:22,920 --> 01:29:23,680 EXIST -- THEY'RE GOING TO LIKELY 2763 01:29:23,680 --> 01:29:25,240 FALL TO THE SCOPE OF AN LDT AND 2764 01:29:25,240 --> 01:29:26,640 YOU MIGHT HAVE THESE OTHER 2765 01:29:26,640 --> 01:29:28,320 CONSEQUENCES STEMMING FROM THAT. 2766 01:29:28,320 --> 01:29:30,720 SO IDEs, I'M GOING TO SWITCH 2767 01:29:30,720 --> 01:29:32,800 OVER TO A SECONDARY PIECE OF 2768 01:29:32,800 --> 01:29:34,800 THIS, APOLOGIES FOR THE BREVITY 2769 01:29:34,800 --> 01:29:36,200 AND HOW FAST I'M COVERING THESE, 2770 01:29:36,200 --> 01:29:39,640 JUST A LOT TO GET THROUGH. 2771 01:29:39,640 --> 01:29:42,600 IDEs DEPENDING ON THE STUDY 2772 01:29:42,600 --> 01:29:43,600 MAY BE APPLICABLE. 2773 01:29:43,600 --> 01:29:46,800 THIS IS BECAUSE THE WAY FDA HAS 2774 01:29:46,800 --> 01:29:49,080 ALWAYS LOOKED AT THIS IS IT'S A 2775 01:29:49,080 --> 01:29:49,640 RISK. 2776 01:29:49,640 --> 01:29:50,960 AND WE'VE ALREADY HEARD THIS IN 2777 01:29:50,960 --> 01:29:53,280 THE PRIOR TWO TALKS, BUT IT 2778 01:29:53,280 --> 01:29:54,680 COMES DOWN TO ASSESSING WHAT IS 2779 01:29:54,680 --> 01:29:55,880 THE RISK AND IMPACT FOR THE 2780 01:29:55,880 --> 01:29:57,760 RESEARCH PARTICIPANT THEMSELVES? 2781 01:29:57,760 --> 01:30:00,760 AN IDE BASICALLY ALLOWS FOR AN 2782 01:30:00,760 --> 01:30:01,640 INVESTIGATIONAL DEVICE TO BE 2783 01:30:01,640 --> 01:30:09,280 USED IN AN STUDY IN ORDER TO 2784 01:30:09,280 --> 01:30:10,640 COLLECT SAFETY AND EFFECTIVENESS 2785 01:30:10,640 --> 01:30:10,960 DATA. 2786 01:30:10,960 --> 01:30:12,720 YOU CAN BE LOOKING AT INTENDED 2787 01:30:12,720 --> 01:30:14,600 USE, THE TEST BEING USED, THE 2788 01:30:14,600 --> 01:30:15,480 INTENDED POPULATION, WHAT 2789 01:30:15,480 --> 01:30:16,520 INFORMATION IS BEING PROVIDED, 2790 01:30:16,520 --> 01:30:19,640 AND TO WHOM, AND IN THE CONTEXT, 2791 01:30:19,640 --> 01:30:21,000 MATT I'M GOING TO PULL YOUR 2792 01:30:21,000 --> 01:30:22,040 QUESTION IN BECAUSE YOU WERE 2793 01:30:22,040 --> 01:30:23,160 ASKING DR. BROTHERS AS WELL 2794 01:30:23,160 --> 01:30:24,440 ABOUT WHAT HAPPENS PHYSICALLY 2795 01:30:24,440 --> 01:30:26,880 FOR, LIKE, PEDIATRIC 2796 01:30:26,880 --> 01:30:29,080 POPULATIONS, FOR NEWBORNS, 2797 01:30:29,080 --> 01:30:30,200 FETUSES, PREGNANT WOMEN, THOSE 2798 01:30:30,200 --> 01:30:31,440 ARE ALL GOING TO BE FACTORED IN. 2799 01:30:31,440 --> 01:30:33,360 IF YOU CAN IMAGINE A TEST 2800 01:30:33,360 --> 01:30:35,280 SCENARIO WHERE YOU WERE ACTUALLY 2801 01:30:35,280 --> 01:30:36,600 DOING -- I'M GOING TO PULL IN 2802 01:30:36,600 --> 01:30:38,000 GENETIC TESTING BECAUSE IT'S AN 2803 01:30:38,000 --> 01:30:38,920 EASY ONE TO COME THROUGH, IF 2804 01:30:38,920 --> 01:30:40,760 YOU'RE DOING GENETIC TESTING AND 2805 01:30:40,760 --> 01:30:41,960 GLG TO BE RETURNING INFORMATION 2806 01:30:41,960 --> 01:30:46,440 TO AN OAR W OTHERWISE HEALTHY N, 2807 01:30:46,440 --> 01:30:49,360 THAT IS A POTENTIAL RISK 2808 01:30:49,360 --> 01:30:50,520 IMPLICATION TO BE CONSIDERED. 2809 01:30:50,520 --> 01:30:52,840 AS OPPOSED TO WHETHER THERE'S AN 2810 01:30:52,840 --> 01:30:53,920 APPARENT DISEASE PRESENT THAT 2811 01:30:53,920 --> 01:30:54,840 CHANGES THE RISK PARADIGM. 2812 01:30:54,840 --> 01:30:57,480 SO DEPENDING ON WHO YOU'RE 2813 01:30:57,480 --> 01:30:59,000 TURNING THAT INFORMATION TO, WHO 2814 01:30:59,000 --> 01:31:00,560 IT'S GOING TO BE USED BY AND 2815 01:31:00,560 --> 01:31:02,200 WHAT FOR ALL CAN FACTOR INTO 2816 01:31:02,200 --> 01:31:05,040 THIS. 2817 01:31:05,040 --> 01:31:07,560 SO I'M GOING TO SWITCH GEARS NOW 2818 01:31:07,560 --> 01:31:10,520 TO ANOTHER BE LEGAL CONSTRUCT 2819 01:31:10,520 --> 01:31:12,320 AND THAT'S HIPAA. 2820 01:31:12,320 --> 01:31:13,720 SO I JUST WANT TO POINT OUT, 2821 01:31:13,720 --> 01:31:15,720 HIPAA IS ACTUALLY OVERSEEN BY 2822 01:31:15,720 --> 01:31:16,600 THE OFFICE OF CIVIL RIGHTS AT 2823 01:31:16,600 --> 01:31:17,320 HHS. 2824 01:31:17,320 --> 01:31:18,680 THEY'RE RESPONSIBLE FOR ITS 2825 01:31:18,680 --> 01:31:19,760 IMPLEMENTATION AND ENFORCEMENT 2826 01:31:19,760 --> 01:31:20,440 HERE. 2827 01:31:20,440 --> 01:31:22,840 AND THE STANDARD HERE IS THAT 2828 01:31:22,840 --> 01:31:24,800 HIPAA REQUIRES COVERED ENTITIES 2829 01:31:24,800 --> 01:31:26,440 AND THEIR BUSINESS ASSOCIATES TO 2830 01:31:26,440 --> 01:31:27,440 GIVE INDIVIDUALS ACCESS TO A 2831 01:31:27,440 --> 01:31:29,360 COPY OF THEIR PROTECTED HEALTH 2832 01:31:29,360 --> 01:31:31,280 INFORMATION THAT'S HELD IN A 2833 01:31:31,280 --> 01:31:33,840 DESIGNATED RECORD SET. 2834 01:31:33,840 --> 01:31:35,120 THIS COLLOQUIALLY CALLED THE 2835 01:31:35,120 --> 01:31:35,920 RIGHT OF ACCESS. 2836 01:31:35,920 --> 01:31:37,800 YOU MIGHT BE ASKING YOURSELF 2837 01:31:37,800 --> 01:31:39,000 WHAT IS A COVERED ENTITY? 2838 01:31:39,000 --> 01:31:41,200 HEALTH PLANS, HEALTHCARE 2839 01:31:41,200 --> 01:31:41,720 CLEARINGHOUSES, HEALTHCARE 2840 01:31:41,720 --> 01:31:43,880 PROVIDERS WHO ELECTRONICALLY 2841 01:31:43,880 --> 01:31:44,720 TRANSMIT ANY HEALTH INFORMATION 2842 01:31:44,720 --> 01:31:47,040 IN CONNECTION WITH TRANSACTIONS 2843 01:31:47,040 --> 01:31:48,560 FOR WHICH HHS HAS ADOPTED 2844 01:31:48,560 --> 01:31:49,040 STANDARDS. 2845 01:31:49,040 --> 01:31:50,160 SO IMAGINE IF YOU ARE BILLING 2846 01:31:50,160 --> 01:31:51,240 FOR SERVICES, YOU'RE GOING TO BE 2847 01:31:51,240 --> 01:31:54,640 A COVERED EN ENTITY. 2848 01:31:54,640 --> 01:31:55,600 HOPEFULLY THAT GIVES A LITTLE 2849 01:31:55,600 --> 01:31:56,400 BIT OF A CONTEXT. 2850 01:31:56,400 --> 01:31:58,040 SO THE OTHER ADVICE YOU MIGHT BE 2851 01:31:58,040 --> 01:31:59,920 ASKING YOURSELF, WHAT IS A 2852 01:31:59,920 --> 01:32:01,160 DESIGNATED RECORD SET? 2853 01:32:01,160 --> 01:32:03,960 IF HIPAA APPLIES TO DESIGNATED 2854 01:32:03,960 --> 01:32:05,240 RECORD SETS AND THAT'S WHAT YOU 2855 01:32:05,240 --> 01:32:07,520 HAVE ACCESS TO, WHAT IS A 2856 01:32:07,520 --> 01:32:08,280 DESIGNATED RECORD SET? 2857 01:32:08,280 --> 01:32:10,400 THE DRS IS A GROUP OF RECORDS 2858 01:32:10,400 --> 01:32:12,040 MAINTAINED BY OR FOR A COVERED 2859 01:32:12,040 --> 01:32:13,720 ENTITY THAT COMPRISES THE 2860 01:32:13,720 --> 01:32:20,480 MEDICAL AND -- RECO BILL RECORDN 2861 01:32:20,480 --> 01:32:23,560 INDIVIDUAL, ENROLLMENT, PAYMENT, 2862 01:32:23,560 --> 01:32:25,120 CLAIMS ADJUDICATION, CASE OR 2863 01:32:25,120 --> 01:32:26,640 MEDICAL MANAGEMENT, RECORD 2864 01:32:26,640 --> 01:32:29,920 SYSTEMS MAINTAINED BY OR FOR A 2865 01:32:29,920 --> 01:32:32,280 HEALTH PLAN USED IN WHOLE OR IN 2866 01:32:32,280 --> 01:32:35,520 PART BY COVERED ENTITY TO MAKE 2867 01:32:35,520 --> 01:32:37,160 DECISIONS ABOUT INDIVIDUALS. 2868 01:32:37,160 --> 01:32:38,360 THE IMPORTANT THING TO THINK 2869 01:32:38,360 --> 01:32:39,680 ABOUT HERE IS THAT RESEARCH 2870 01:32:39,680 --> 01:32:40,800 RECORDS THAT ARE MAINTAINED AS 2871 01:32:40,800 --> 01:32:42,880 PART OF THE DESIGNATED RECORD 2872 01:32:42,880 --> 01:32:44,320 SET ARE INCLUDED UNLESS THEY'VE 2873 01:32:44,320 --> 01:32:45,200 BEEN ACCEPTED. 2874 01:32:45,200 --> 01:32:48,520 SO THERE ARE SPECIFIC EXCEPTIONS 2875 01:32:48,520 --> 01:32:50,320 HERE, BUT IF YOU HAVE YOUR 2876 01:32:50,320 --> 01:32:52,040 RESEARCH RECORD IN AS PART OF 2877 01:32:52,040 --> 01:32:53,680 THE DESIGNATED RECORD SET, THAT 2878 01:32:53,680 --> 01:32:54,880 MEANS YOU HAVEN'T SEGREGATED IT 2879 01:32:54,880 --> 01:32:56,720 AS PART OF YOUR EHR, THAT'S PART 2880 01:32:56,720 --> 01:32:58,520 OF THE DESIGNATED RECORD SET. 2881 01:32:58,520 --> 01:33:00,240 IF YOU SEGREGATED IT AWAY, IT'S 2882 01:33:00,240 --> 01:33:01,360 NOT PART OF THE RECORD SET AND 2883 01:33:01,360 --> 01:33:02,400 THERE ARE OTHER THINGS THAT ARE 2884 01:33:02,400 --> 01:33:03,800 GOING TO APPLY. 2885 01:33:03,800 --> 01:33:05,880 SO LET'S GO TO THE NEXT SLIDE, 2886 01:33:05,880 --> 01:33:07,640 BECAUSE WE'LL GET INTO THIS. 2887 01:33:07,640 --> 01:33:09,280 SO HIPAA, HOW IT APPLIES TO 2888 01:33:09,280 --> 01:33:09,560 RESEARCH. 2889 01:33:09,560 --> 01:33:10,840 SO THE COVERED ENTITY COULD BE 2890 01:33:10,840 --> 01:33:13,640 BOTH A CLINICAL AND -- HAVE BOTH 2891 01:33:13,640 --> 01:33:14,640 CLINICAL AND RESEARCH 2892 01:33:14,640 --> 01:33:15,120 COMPONENTS. 2893 01:33:15,120 --> 01:33:16,080 AND IT'S IMPORTANT TO NOTE THAT 2894 01:33:16,080 --> 01:33:17,480 IT'S THE INSTITUTION THEMSELVES 2895 01:33:17,480 --> 01:33:19,360 THAT ACTUALLY DETERMINE WHICH 2896 01:33:19,360 --> 01:33:20,600 COMPONENTS ARE COVERED UNDER 2897 01:33:20,600 --> 01:33:22,000 HIPAA AND WHICH ONES ARE NOT. 2898 01:33:22,000 --> 01:33:26,760 A AND SO YOU CAN EITHER CHOOSE E 2899 01:33:26,760 --> 01:33:30,520 WHOLLY COVERED UNDER HIPAA OR 2900 01:33:30,520 --> 01:33:32,400 YOU CAN BE A HYBRID ENTITY. 2901 01:33:32,400 --> 01:33:35,600 SO YOU CAN CHOOSE TO DESIGNATE 2902 01:33:35,600 --> 01:33:37,000 WHICH PARTS ARE HEALTHCARE 2903 01:33:37,000 --> 01:33:38,080 COMPONENTS, WHICH PARTS ARE NOT 2904 01:33:38,080 --> 01:33:39,080 HEALTHCARE COMPONENTS. 2905 01:33:39,080 --> 01:33:41,120 SO IF YOUR INSTITUTION 2906 01:33:41,120 --> 01:33:42,120 DESIGNATES A RESEARCH LAB AS 2907 01:33:42,120 --> 01:33:43,760 PART OF ITS HEALTHCARE 2908 01:33:43,760 --> 01:33:45,080 COMPONENT, IT IS GOING TO BE 2909 01:33:45,080 --> 01:33:46,280 CONSIDERED PART OF THE COVERED 2910 01:33:46,280 --> 01:33:47,440 ENTITY AND IT'S GOING TO BE 2911 01:33:47,440 --> 01:33:49,080 SUBJECT TO HIPAA REQUIREMENTS. 2912 01:33:49,080 --> 01:33:52,080 IF THE RESEARCH COMPONENTS ARE 2913 01:33:52,080 --> 01:33:53,360 NOT -- ARE SPECIFICALLY EXCLUDED 2914 01:33:53,360 --> 01:33:54,240 THEN THEY'RE NOT GOING TO BE 2915 01:33:54,240 --> 01:33:56,320 SUBJECT TO THE PRIVACY RULE. 2916 01:33:56,320 --> 01:33:58,760 NOW, THAT MEANS THAT DATA 2917 01:33:58,760 --> 01:33:59,760 COLLECTED FROM RESEARCH LABS 2918 01:33:59,760 --> 01:34:01,480 THAT ARE EXCLUDED ARE NOT GOING 2919 01:34:01,480 --> 01:34:03,080 TO HAVE TO -- ARE NOT SUBJECT TO 2920 01:34:03,080 --> 01:34:05,560 THE PRIVACY RULE, THEY'RE NOT 2921 01:34:05,560 --> 01:34:07,800 SUBJECT TO THE DESIGNATED RECORD 2922 01:34:07,800 --> 01:34:09,000 SET BECAUSE THEY'RE NOT PART OF 2923 01:34:09,000 --> 01:34:10,400 IT THEREFORE THERE IS NO RIGHT 2924 01:34:10,400 --> 01:34:11,400 TO ACCESS THAT INFORMATION. 2925 01:34:11,400 --> 01:34:13,320 SO YOU'VE GOT A DIFFERENCE -- A 2926 01:34:13,320 --> 01:34:14,760 LOT OF THIS WILL DEPEND GREATLY 2927 01:34:14,760 --> 01:34:16,000 ON THE INSTITUTIONAL DECISION 2928 01:34:16,000 --> 01:34:18,360 THAT'S MADE. 2929 01:34:18,360 --> 01:34:19,960 I'D BE REMISS IF I DIDN'T 2930 01:34:19,960 --> 01:34:21,240 MENTION THE FACT THERE'S BEEN 2931 01:34:21,240 --> 01:34:23,000 NUMEROUS PAPERS WRITTEN 2932 01:34:23,000 --> 01:34:24,840 CONCLUDED THAT THERE IS A 2933 01:34:24,840 --> 01:34:26,720 CONFLICT BETWEEN HIPAA AND CLIA 2934 01:34:26,720 --> 01:34:28,720 WHEN YOU'VE GOT PARTICIPANTS 2935 01:34:28,720 --> 01:34:30,360 DESIRING ACCESS TO TEST RESULTS 2936 01:34:30,360 --> 01:34:32,160 FOR NON-CLIA CERTIFIED RESEARCH 2937 01:34:32,160 --> 01:34:34,480 LABS THAT EXIST WITHIN A 2938 01:34:34,480 --> 01:34:35,120 HIPAA-COVERED ENTITY. 2939 01:34:35,120 --> 01:34:36,880 I'M NOT GOING TO WADE INTO THAT 2940 01:34:36,880 --> 01:34:38,120 DEBATE HERE, I JUST WANT TO MAKE 2941 01:34:38,120 --> 01:34:40,080 SURE THAT PEOPLE ARE AWARE THAT 2942 01:34:40,080 --> 01:34:41,080 THAT IS A DEBATE THAT HAS BEEN 2943 01:34:41,080 --> 01:34:42,800 MADE OR THAT IS AN ARGUMENT THAT 2944 01:34:42,800 --> 01:34:43,480 HAS BEEN MADE. 2945 01:34:43,480 --> 01:34:44,920 I WILL JUST GO BACK AND SAY A 2946 01:34:44,920 --> 01:34:46,040 LOT OF THAT IS GOING TO BE 2947 01:34:46,040 --> 01:34:47,600 DETERMINED BY THAT INSTITUTIONAL 2948 01:34:47,600 --> 01:34:51,320 DECISION. 2949 01:34:51,320 --> 01:34:52,280 SO I'M GOING TO TRY AND COVER 2950 01:34:52,280 --> 01:34:53,480 THESE THINGS REALLY QUICKLY. 2951 01:34:53,480 --> 01:34:54,600 COMMON RULE IS THE LAST 2952 01:34:54,600 --> 01:34:55,120 REGULATION I'LL MENTION. 2953 01:34:55,120 --> 01:34:56,880 THIS IS THE FEDERAL HHS 2954 01:34:56,880 --> 01:34:58,560 REGULATION FOR THE PROTECTION OF 2955 01:34:58,560 --> 01:34:59,920 HUMAN SUBJECTS. 2956 01:34:59,920 --> 01:35:00,440 IN RESEARCH. 2957 01:35:00,440 --> 01:35:02,240 WHY IS IT RELEVANT HERE? 2958 01:35:02,240 --> 01:35:03,720 IT'S BECAUSE COMMON RULE APPLIES 2959 01:35:03,720 --> 01:35:05,520 TO HEUL MAN SUBJECTS RESEARCH 2960 01:35:05,520 --> 01:35:05,960 ITSELF. 2961 01:35:05,960 --> 01:35:08,880 AND THE REQUIREMENTS ARE 2962 01:35:08,880 --> 01:35:09,960 APPLICABLE BASED ON THAT. 2963 01:35:09,960 --> 01:35:11,240 ONE THING I'LL POINT OUT, I'M 2964 01:35:11,240 --> 01:35:16,400 GOING TO SKIP THE FIRST TWO 2965 01:35:16,400 --> 01:35:17,280 BULLETS, ONE OF THE REQUIREMENTS 2966 01:35:17,280 --> 01:35:19,160 IN THE COMMON RULE AND WE HEARD 2967 01:35:19,160 --> 01:35:20,800 EARLIER FROM JEFF THAT INFORMED 2968 01:35:20,800 --> 01:35:22,640 CONSENTS WILL OFTEN LIST THIS, 2969 01:35:22,640 --> 01:35:23,560 WHETHER YOU'RE GOING TO HAVE 2970 01:35:23,560 --> 01:35:25,440 INFORMATION RETURNED OR NOT, 2971 01:35:25,440 --> 01:35:26,280 THIS IS A REQUIREMENT TO THE 2972 01:35:26,280 --> 01:35:27,920 COMMON RULE IF YOU WERE 2973 01:35:27,920 --> 01:35:28,800 CONDUCTING HUMAN SUBJECTS 2974 01:35:28,800 --> 01:35:30,360 RESEARCH SO YOU HAVE TO ACTUALLY 2975 01:35:30,360 --> 01:35:31,800 INDICATE -- YOU HAVE TO INCLUDE 2976 01:35:31,800 --> 01:35:34,040 A STATEMENT REGARDING WHETHER 2977 01:35:34,040 --> 01:35:34,720 CLINICALLY RELEVANT RESEARCH 2978 01:35:34,720 --> 01:35:36,320 RESULTS WILL BE RETURNED OR WILL 2979 01:35:36,320 --> 01:35:37,760 BE DISCLOSED TO RESEARCH 2980 01:35:37,760 --> 01:35:39,960 PARTICIPANTS. 2981 01:35:39,960 --> 01:35:41,320 BUT IT WAS ALSO PREVIOUSLY NOTED 2982 01:35:41,320 --> 01:35:42,960 JUST BECAUSE IT'S EEDZIER, YOU 2983 01:35:42,960 --> 01:35:44,240 KNOW, OFTEN, DOESN'T MEAN IT'S 2984 01:35:44,240 --> 01:35:48,120 THE RIGHT THING TO DO. 2985 01:35:48,120 --> 01:35:49,640 AND THERE REALLY IS A NEED FOR 2986 01:35:49,640 --> 01:35:49,880 BALANCE. 2987 01:35:49,880 --> 01:35:51,200 I THINK YOU HEARD A LOT OF THIS 2988 01:35:51,200 --> 01:35:52,760 COMING IN FROM THE INTROS WE D 2989 01:35:52,760 --> 01:35:54,400 WE REALLY ARE MOVING TOWARDS A 2990 01:35:54,400 --> 01:35:55,480 MORE PARTICIPATORY MODEL OF 2991 01:35:55,480 --> 01:35:57,840 RESEARCH ITSELF. 2992 01:35:57,840 --> 01:35:58,760 PARTICIPANTS EXPECT AND WANT TO 2993 01:35:58,760 --> 01:36:00,280 HAVE THE OPTION TO HAVE THEIR 2994 01:36:00,280 --> 01:36:01,480 PERSONAL RESULTS RETURNED. 2995 01:36:01,480 --> 01:36:02,600 RECEIVING RESULTS HAVE MANY 2996 01:36:02,600 --> 01:36:03,400 BENEFITS TO BOTH PARTIES HERE. 2997 01:36:03,400 --> 01:36:05,120 IT CAN BE A REAL INCENTIVE TO 2998 01:36:05,120 --> 01:36:06,840 PARTICIPATING IN RESEARCH 2999 01:36:06,840 --> 01:36:10,400 ITSELF. 3000 01:36:10,400 --> 01:36:12,480 SO WE VIEW RETURN OF RESULTS, 3001 01:36:12,480 --> 01:36:14,600 AND NIH HAS LONG SUPPORTED THIS 3002 01:36:14,600 --> 01:36:15,600 MOVEMENT, SPECIFICALLY IN THE 3003 01:36:15,600 --> 01:36:17,240 CONTEXT OF TREATING PARTICIPANTS 3004 01:36:17,240 --> 01:36:18,560 AS EQUAL PARTNERS IN THE 3005 01:36:18,560 --> 01:36:19,000 RESEARCH. 3006 01:36:19,000 --> 01:36:21,560 THAT MEANS EQUALITY IN INFORMING 3007 01:36:21,560 --> 01:36:24,200 RESEARCH PRIORITIES AND ADVISING 3008 01:36:24,200 --> 01:36:24,800 STUDY DESIGN. 3009 01:36:24,800 --> 01:36:25,920 IMPORTANTLY WE REALLY VIEW THE 3010 01:36:25,920 --> 01:36:28,600 RETURN OF RESEARCH RESULTS AS 3011 01:36:28,600 --> 01:36:30,040 BEING RESPECTFUL OF THE AUTONOMY 3012 01:36:30,040 --> 01:36:32,080 OF THE INDIVIDUALS AND ALSO 3013 01:36:32,080 --> 01:36:33,840 HELPING TO CONTRIBUTE TO THE 3014 01:36:33,840 --> 01:36:34,920 ADVANCEMENT OF SCIENCE. 3015 01:36:34,920 --> 01:36:36,320 IT'S VERY RESPECTFUL IN OUR 3016 01:36:36,320 --> 01:36:37,200 VIEW. 3017 01:36:37,200 --> 01:36:38,680 AND I KNOW I'M OVER TIME, I 3018 01:36:38,680 --> 01:36:39,200 APOLOGIZE. 3019 01:36:39,200 --> 01:36:40,840 I'M GOING TO SKIP REALLY QUICKLY 3020 01:36:40,840 --> 01:36:41,720 HERE TO THE END. 3021 01:36:41,720 --> 01:36:44,120 I'LL JUST SAY THERE'S ALREADY 3022 01:36:44,120 --> 01:36:45,760 RETURN OF RESULTS THAT ARE BEING 3023 01:36:45,760 --> 01:36:46,520 SUPPORTED HERE AT THE NIH IN 3024 01:36:46,520 --> 01:36:48,440 TERMS OF RESEARCH, IN TERMS OF 3025 01:36:48,440 --> 01:36:52,160 STUDIES THAT ARE DOING THIS. 3026 01:36:52,160 --> 01:36:52,960 I'VE LISTED A COUPLE HERE, I 3027 01:36:52,960 --> 01:36:54,240 WON'T GO THROUGH THIS BUT WILL 3028 01:36:54,240 --> 01:36:55,400 POINT OUT GENERALLY WHAT WE ARE 3029 01:36:55,400 --> 01:36:58,160 LOOKING AT TRYING TO ENCOURAGE 3030 01:36:58,160 --> 01:36:59,360 GREATER RETURN IN ACCORDANCE 3031 01:36:59,360 --> 01:37:00,560 WITH CURRENT REQUIREMENTS. 3032 01:37:00,560 --> 01:37:02,520 THERE IS A FUNDING OPPORTUNITY 3033 01:37:02,520 --> 01:37:03,760 THAT'S GOING TO BE GOING OUT 3034 01:37:03,760 --> 01:37:04,760 SOON THAT IS GOING TO BE 3035 01:37:04,760 --> 01:37:07,160 SPECIFICALLY LOOKING AT THE 3036 01:37:07,160 --> 01:37:08,400 RETURN IN ENVIRONMENTAL HEALTH 3037 01:37:08,400 --> 01:37:09,680 AND NON-GENOMIC RESEARCH 3038 01:37:09,680 --> 01:37:10,320 RESULTS. 3039 01:37:10,320 --> 01:37:13,160 LAST SLIDE QUICKLY. 3040 01:37:13,160 --> 01:37:15,120 SO THERE ARE A LOT OF RESEARCH 3041 01:37:15,120 --> 01:37:15,720 NEEDS AND OPPORTUNITIES. 3042 01:37:15,720 --> 01:37:17,080 I WILL ADD ONE THAT'S NOT ON 3043 01:37:17,080 --> 01:37:17,880 THIS LIST. 3044 01:37:17,880 --> 01:37:20,400 AND IT'S REALLY TO HELP DRIVE 3045 01:37:20,400 --> 01:37:22,000 GREATER UNDERSTANDING OF THE 3046 01:37:22,000 --> 01:37:22,720 REGULATORY IMPLICATIONS OF 3047 01:37:22,720 --> 01:37:23,040 RETURN. 3048 01:37:23,040 --> 01:37:24,560 SO WHEN A DECISION IS MADE TO 3049 01:37:24,560 --> 01:37:26,880 RETURN, THOSE REALLY DO -- THOSE 3050 01:37:26,880 --> 01:37:29,320 REALLY DO IMPART A DIFFERENT 3051 01:37:29,320 --> 01:37:29,960 REGULATORY SCHEMA THAT YOU NEED 3052 01:37:29,960 --> 01:37:31,320 TO BE COGNIZANT OF, SO REALLY 3053 01:37:31,320 --> 01:37:32,960 THINKING ABOUT OPPORTUNITIES TO 3054 01:37:32,960 --> 01:37:34,640 HELP ENSURE THAT THERE'S GREATER 3055 01:37:34,640 --> 01:37:35,280 UNDERSTANDING OF THIS. 3056 01:37:35,280 --> 01:37:36,720 AND ALL OF THESE ARE REALLY 3057 01:37:36,720 --> 01:37:37,240 IMPORTANT NEEDS. 3058 01:37:37,240 --> 01:37:38,960 YOU NEED TO KNOW WHAT TO RETURN, 3059 01:37:38,960 --> 01:37:40,280 WHEN TO RETURN, HOW TO RETURN 3060 01:37:40,280 --> 01:37:42,440 IT, HOW PEOPLE ARE GOING TO USE 3061 01:37:42,440 --> 01:37:43,160 IT DOWNSTREAM. 3062 01:37:43,160 --> 01:37:44,480 THERE ARE A WHOLE BUNCH OF 3063 01:37:44,480 --> 01:37:45,480 RESOURCES THAT ARE GOING TO 3064 01:37:45,480 --> 01:37:47,120 BENES NECESSARY TO THIS, 3065 01:37:47,120 --> 01:37:48,560 INFRASTRUCTURE SUPPORTS THAT ARE 3066 01:37:48,560 --> 01:37:49,680 NECESSARY, AND 3067 01:37:49,680 --> 01:37:50,320 ENVIRONMENTALLY-WISE, I THINK 3068 01:37:50,320 --> 01:37:51,680 ABOUT THIS FROM A GENETIC 3069 01:37:51,680 --> 01:37:52,760 STANDPOINT, WE HAVE GENETIC 3070 01:37:52,760 --> 01:37:55,520 TRANS LAY INVENTORIES WHO CAN 3071 01:37:55,520 --> 01:37:56,360 HELP TRANSLATE THAT INFORMATION 3072 01:37:56,360 --> 01:37:57,880 SO PEOPLE CAN UNDERSTAND WHAT IT 3073 01:37:57,880 --> 01:37:58,360 MEANS. 3074 01:37:58,360 --> 01:38:00,680 THERE REALLY ISN'T AN EQUIVALENT 3075 01:38:00,680 --> 01:38:04,000 HERE FOR ENVIRONMENTAL HEALTH. 3076 01:38:04,000 --> 01:38:05,040 BUT IT IS AN OPPORTUNITY FOR A 3077 01:38:05,040 --> 01:38:06,200 NEW FIELD TO BE THOUGHTFUL. 3078 01:38:06,200 --> 01:38:07,320 SO WITH THAT, I WILL CONCLUDE 3079 01:38:07,320 --> 01:38:08,760 AND JUST SAY THANK YOU THAO ALL. 3080 01:38:08,760 --> 01:38:10,200 IF YOU HAVE ANY QUESTIONS, HAPPY 3081 01:38:10,200 --> 01:38:10,960 TO ANSWER. 3082 01:38:10,960 --> 01:38:12,280 SORRY FOR THE SPEED. 3083 01:38:12,280 --> 01:38:13,600 I KNOW THAT WAS JUST A LOT TO 3084 01:38:13,600 --> 01:38:17,960 COVER. 3085 01:38:17,960 --> 01:38:24,760 >>CLAY. 3086 01:38:24,760 --> 01:38:28,360 >>THE INFAMOUS MICROPHONE. 3087 01:38:28,360 --> 01:38:32,640 YOU MENTIONED AB NIH EFFORT TO 3088 01:38:32,640 --> 01:38:35,600 INCLUDE RESEARCH PARTICIPANTS 3089 01:38:35,600 --> 01:38:36,640 AND STUDY DESIGN. 3090 01:38:36,640 --> 01:38:38,080 I'M WONDERING IF -- FIRST OF 3091 01:38:38,080 --> 01:38:39,040 ALL, ARE YOU SATISFIED WITH HOW 3092 01:38:39,040 --> 01:38:39,840 MUCH THAT'S HAPPENING? 3093 01:38:39,840 --> 01:38:42,040 ARE YOU AWARE OF SOME CONCRETE 3094 01:38:42,040 --> 01:38:42,520 EXAMPLES? 3095 01:38:42,520 --> 01:38:43,680 BUT THEN ALSO DO YOU TALK 3096 01:38:43,680 --> 01:38:45,040 ABOUT -- YOU KNOW, IF YOU'RE 3097 01:38:45,040 --> 01:38:47,680 AWARE OF SOME EXAMPLES, DO THEY 3098 01:38:47,680 --> 01:38:48,800 TALK ABOUT PREFERENCES FOR 3099 01:38:48,800 --> 01:38:55,280 RETURN OF RESULTS IN THOSE? 3100 01:38:55,280 --> 01:38:56,920 >>SO I'LL SAY THIS IS A NEWER 3101 01:38:56,920 --> 01:38:58,480 SPACE FOR NIH AND ONE WE'VE 3102 01:38:58,480 --> 01:38:59,400 REALLY BEEN PUSHING FORWARD A 3103 01:38:59,400 --> 01:39:00,000 LOT ON. 3104 01:39:00,000 --> 01:39:01,520 THERE ARE GOOD EXAMPLES COMING 3105 01:39:01,520 --> 01:39:02,920 OUT WHERE WE REALLY ARE TRYING 3106 01:39:02,920 --> 01:39:04,200 TO DO ENGAGEMENT, WE'VE HAD A 3107 01:39:04,200 --> 01:39:05,560 LOT OF COMMUNITY ENGAGEMENT 3108 01:39:05,560 --> 01:39:06,800 ACTIVITIES THAT HAVE GONE ON, 3109 01:39:06,800 --> 01:39:09,320 ESPECIALLY IN THE LAST FEW 3110 01:39:09,320 --> 01:39:09,840 YEARS. 3111 01:39:09,840 --> 01:39:11,560 BUT A LOT OF THIS HAS REALLY 3112 01:39:11,560 --> 01:39:13,280 TRIED TO MAKE SURE THAT WE ARE 3113 01:39:13,280 --> 01:39:14,400 LISTENING AND HEARING FROM 3114 01:39:14,400 --> 01:39:15,520 PARTICIPANTS, THAT THEY ARE 3115 01:39:15,520 --> 01:39:16,280 ACTUALLY AT THE TABLE AND 3116 01:39:16,280 --> 01:39:17,640 SPEAKING AS ONE OF THE OUTCOMES 3117 01:39:17,640 --> 01:39:18,840 THAT THEY WANT TO SEE AS PART OF 3118 01:39:18,840 --> 01:39:20,080 THE RESEARCH. 3119 01:39:20,080 --> 01:39:22,080 WE THINK ABOUT -- ESPECIALLY FOR 3120 01:39:22,080 --> 01:39:23,360 ME I THINK ABOUT THE CLINICAL 3121 01:39:23,360 --> 01:39:24,880 RESEARCH REALM, I'M THINKING 3122 01:39:24,880 --> 01:39:26,400 OFTEN ABOUT PRIMARY OUTCOME 3123 01:39:26,400 --> 01:39:28,800 MEASURES AND WHAT I'M TRYING TO 3124 01:39:28,800 --> 01:39:30,360 ACTUALLY ACHIEVE WITH WHATEVER 3125 01:39:30,360 --> 01:39:31,360 RESEARCH STUDY IS GOING ON. 3126 01:39:31,360 --> 01:39:32,760 WHAT ARE THE IMPORTANT OUTCOMES 3127 01:39:32,760 --> 01:39:34,200 THAT RESEARCH PARTICIPANTS WANT 3128 01:39:34,200 --> 01:39:35,800 TO KNOW ABOUT, AND CAN WE ALIGN 3129 01:39:35,800 --> 01:39:36,160 THOSE? 3130 01:39:36,160 --> 01:39:37,200 THAT'S REALLY WHERE WE'RE TRYING 3131 01:39:37,200 --> 01:39:37,640 TO GET TO. 3132 01:39:37,640 --> 01:39:39,480 WE WANT TO MAKE SURE THAT WE'RE 3133 01:39:39,480 --> 01:39:40,440 ACTUALLY CREATING MEANINGFUL 3134 01:39:40,440 --> 01:39:42,560 SCIENTIFIC RESEARCH RESULTS FOR 3135 01:39:42,560 --> 01:39:43,960 THE PUBLIC. 3136 01:39:43,960 --> 01:39:48,360 YOU KNOW, I WON'T SAY THAT WE'RE 3137 01:39:48,360 --> 01:39:49,040 SATISFIED BECAUSE THERE'S A LOT 3138 01:39:49,040 --> 01:39:50,160 OF WORK TO BE DONE. 3139 01:39:50,160 --> 01:39:52,320 I MEAN, I THINK WE ARE MAKING 3140 01:39:52,320 --> 01:39:53,720 GOOD PROGRESS AND WE'RE CONSTANT 3141 01:39:53,720 --> 01:39:54,720 I TRYING TO MOVE FORWARD. 3142 01:39:54,720 --> 01:39:55,720 BUT THERE'S ALWAYS GOING TO BE 3143 01:39:55,720 --> 01:39:56,520 MORE THAN WE CAN DO. 3144 01:39:56,520 --> 01:39:57,720 AND I THINK THAT'S THE ONLY 3145 01:39:57,720 --> 01:39:59,080 REASON I'M SAYING, OF COURSE 3146 01:39:59,080 --> 01:40:02,160 WE'RE NOT SATISFIED, WE WANT TO 3147 01:40:02,160 --> 01:40:03,440 MAKE SURE THIS IS REALLY 3148 01:40:03,440 --> 01:40:04,080 WIDESPREAD. 3149 01:40:04,080 --> 01:40:05,840 I'M NOT SURE WHO'S CALLING OUT 3150 01:40:05,840 --> 01:40:08,960 QUESTIONS, SO -- 3151 01:40:08,960 --> 01:40:10,440 >>JEFF, GO AHEAD. 3152 01:40:10,440 --> 01:40:12,000 >>ONE OF THE THINGS THE 3153 01:40:12,000 --> 01:40:13,360 NATIONAL ACADEMY STATEMENT 3154 01:40:13,360 --> 01:40:15,080 FOCUSED ON WAS LABORATORY 3155 01:40:15,080 --> 01:40:18,200 QUALITY ISSUES FOR NON-CLIA 3156 01:40:18,200 --> 01:40:19,840 CERTIFIED LABS, AND I THINK THE 3157 01:40:19,840 --> 01:40:21,440 NOTION WAS, YOU KNOW, I KNOW 3158 01:40:21,440 --> 01:40:24,520 MANY OF THESE LABS ARE SUPPORTED 3159 01:40:24,520 --> 01:40:25,960 THROUGH NIH RESEARCH ARE VERY 3160 01:40:25,960 --> 01:40:27,600 HIGH QUALITY AND WOULD MEET CLIA 3161 01:40:27,600 --> 01:40:29,520 STANDARDS, BUT WE ALSO KNOW 3162 01:40:29,520 --> 01:40:32,440 OTHER ONES AREN'T. 3163 01:40:32,440 --> 01:40:33,880 SO THERE WAS A NOTION OF SAYING 3164 01:40:33,880 --> 01:40:35,600 NIH OUGHT TO TRY TO ENCOURAGE 3165 01:40:35,600 --> 01:40:38,680 THE DEVELOPMENT OF LABORATORY 3166 01:40:38,680 --> 01:40:40,560 STANDARDS, QUALITY STANDARDS FOR 3167 01:40:40,560 --> 01:40:41,600 LABS THAT ARE NOT CLIA 3168 01:40:41,600 --> 01:40:41,920 CERTIFIED. 3169 01:40:41,920 --> 01:40:43,640 SO I'M WONDERING WHETHER THERE'S 3170 01:40:43,640 --> 01:40:45,520 BEEN ANY FURTHER DISCUSSION OR 3171 01:40:45,520 --> 01:40:46,680 PROGRESS ON THAT PARTICULAR 3172 01:40:46,680 --> 01:40:49,040 QUESTION. 3173 01:40:49,040 --> 01:40:50,080 >>THANKS, JOAF. 3174 01:40:50,080 --> 01:40:53,200 JEFF.I THINK YOU'RE REFERRING TE 3175 01:40:53,200 --> 01:40:54,920 QUALITY MANAGEMENT SYSTEM THAT 3176 01:40:54,920 --> 01:40:55,840 WAS RECOMMENDED AS PART OF THE 3177 01:40:55,840 --> 01:40:57,040 REPORT ITSELF. 3178 01:40:57,040 --> 01:40:59,160 IT'S AN INTERESTING QUESTION, 3179 01:40:59,160 --> 01:41:01,120 AND I HAVE TO SAY AS A FORMER 3180 01:41:01,120 --> 01:41:02,680 PERSON WHO USED TO BE AT THE 3181 01:41:02,680 --> 01:41:03,680 BENCH, I KNOW THAT THE STANDARDS 3182 01:41:03,680 --> 01:41:05,800 CAN VARY BETWEEN LABS. 3183 01:41:05,800 --> 01:41:06,880 THE QUESTION I THINK COMES DOWN 3184 01:41:06,880 --> 01:41:09,480 TO WHO'S THE RIGHT -- WHERE'S 3185 01:41:09,480 --> 01:41:10,240 THE RIGHT PLACE TO BE ABLE TO DO 3186 01:41:10,240 --> 01:41:10,680 THIS. 3187 01:41:10,680 --> 01:41:12,960 I'LL JUST REMIND YOU, NIH ISN'T 3188 01:41:12,960 --> 01:41:16,760 A REGULATORY AGENCY, AND SO 3189 01:41:16,760 --> 01:41:19,160 OTHER AGENCIES EXIST LIKE CMS TO 3190 01:41:19,160 --> 01:41:20,400 ACTUALLY REGULATE THAT TYPE OF 3191 01:41:20,400 --> 01:41:21,280 TESTING AND ENVIRONMENT. 3192 01:41:21,280 --> 01:41:22,720 SO I THINK THERE'S STILL A 3193 01:41:22,720 --> 01:41:24,040 QUESTION AS TO WHERE THAT 3194 01:41:24,040 --> 01:41:25,160 QUALITY SYSTEM SHOULD BE COMING 3195 01:41:25,160 --> 01:41:26,760 FROM AND WHERE IT CAN COME IN. 3196 01:41:26,760 --> 01:41:28,280 YOU KNOW, I DON'T HAVE AN ANSWER 3197 01:41:28,280 --> 01:41:31,120 FOR YOU ON THAT ONE TODAY, BUT I 3198 01:41:31,120 --> 01:41:33,360 THINK IT'S A RECOGNIZED ISSUE IS 3199 01:41:33,360 --> 01:41:34,480 HOW DO WE ASSURE QUALITY. 3200 01:41:34,480 --> 01:41:35,680 AT THE END OF THE DAY, WE WANT 3201 01:41:35,680 --> 01:41:36,720 TO MAKE SURE THAT IF WE ARE 3202 01:41:36,720 --> 01:41:39,680 ROMAN CATHRETURNING INFORMATIONS 3203 01:41:39,680 --> 01:41:41,680 BEING RETURNED TO THE RIGHT 3204 01:41:41,680 --> 01:41:44,320 PERSON, AND IT'S AT LEAST 3205 01:41:44,320 --> 01:41:48,280 ACCURATE. 3206 01:41:48,280 --> 01:41:49,560 >>HI. 3207 01:41:49,560 --> 01:41:51,760 SO WITH THE NAVAJO RESERVATION, 3208 01:41:51,760 --> 01:41:54,120 I KNOW WE'RE NOT CLIA CERTIFIED, 3209 01:41:54,120 --> 01:41:56,640 BEING UNDER THE IHS GOVERNMENT. 3210 01:41:56,640 --> 01:41:59,160 DOES THAT PUT US IN A POSITION 3211 01:41:59,160 --> 01:42:00,360 WHERE OUR PARTICIPANTS WON'T BE 3212 01:42:00,360 --> 01:42:02,600 ABLE TO GET THOSE RESULTS UNLESS 3213 01:42:02,600 --> 01:42:05,040 OTHERWISE HIPAA RELEASES THOSE 3214 01:42:05,040 --> 01:42:07,680 RESULTS? 3215 01:42:07,680 --> 01:42:11,960 AND THEN THAT PERTAINS TO, AS A 3216 01:42:11,960 --> 01:42:15,360 PARTICIPANT MYSELF, WITH THE 3217 01:42:15,360 --> 01:42:19,280 MULTIPLE DIAGNOSES FOR MYSELF AS 3218 01:42:19,280 --> 01:42:21,040 A PRENATAL PATIENT AND ALSO FOR 3219 01:42:21,040 --> 01:42:23,600 MY DAUGHTER BEING BORN WITH 3220 01:42:23,600 --> 01:42:28,440 MULTIPLE DISABILITIES, OR 3221 01:42:28,440 --> 01:42:29,520 DELAYS, THAT PUTS US IN A 3222 01:42:29,520 --> 01:42:31,400 POSITION TO NOT BE ABLE TO -- OR 3223 01:42:31,400 --> 01:42:33,240 HOW WOULD WE GO AROUND FINDING 3224 01:42:33,240 --> 01:42:36,240 OUT IF THAT EXPOSURE COULD 3225 01:42:36,240 --> 01:42:37,520 PERTAIN TO THE NEW DIAGNOSES 3226 01:42:37,520 --> 01:42:43,560 THAT WE DO HAVE? 3227 01:42:43,560 --> 01:42:44,800 AND THAT KIND OF PUTS US IN A 3228 01:42:44,800 --> 01:42:47,320 CLOUD AS PARTICIPANTS. 3229 01:42:47,320 --> 01:42:48,960 SO THAT WAS MY QUESTION, LIKE 3230 01:42:48,960 --> 01:42:51,560 HOW DO WE GO AROUND THAT, BEING 3231 01:42:51,560 --> 01:42:54,320 A NON-CLIA CERTIFIED UNDER IHS 3232 01:42:54,320 --> 01:42:56,600 GOVERNMENT? 3233 01:42:56,600 --> 01:42:59,520 >>SO YOU'RE PUTTING IN OTHER 3234 01:42:59,520 --> 01:43:00,200 COMPLICATIONS, YOU'RE TALKING 3235 01:43:00,200 --> 01:43:03,000 ABOUT OTHER AGENCIES THAT 3236 01:43:03,000 --> 01:43:04,640 OVERSEE DIFFERENT ASPECTS, BUT I 3237 01:43:04,640 --> 01:43:05,640 WILL REFER BACK TO SOME OF THE 3238 01:43:05,640 --> 01:43:06,600 OTHER PIECES. 3239 01:43:06,600 --> 01:43:08,320 INSTITUTIONS MAKE DECISIONS 3240 01:43:08,320 --> 01:43:09,440 ABOUT WHETHER A RESEARCH 3241 01:43:09,440 --> 01:43:12,440 COMPONENT IS PART OF THE COVERED 3242 01:43:12,440 --> 01:43:12,960 ENTITY OR NOT. 3243 01:43:12,960 --> 01:43:14,280 AND SO DEPENDING ON HOW THAT'S 3244 01:43:14,280 --> 01:43:18,000 ACTUALLY BEEN DECIDED WILL 3245 01:43:18,000 --> 01:43:19,480 DEPEND ON CLIA CERTIFICATION IS 3246 01:43:19,480 --> 01:43:20,280 REQUIRED TO RETURN. 3247 01:43:20,280 --> 01:43:22,320 NOW, IF IT'S A NON-CLIA 3248 01:43:22,320 --> 01:43:23,640 CERTIFIED LAB AND THEY'RE 3249 01:43:23,640 --> 01:43:25,520 RETURNING INFORMATION, THE ONLY 3250 01:43:25,520 --> 01:43:27,560 THING I CAN SAY IS TECHNICALLY 3251 01:43:27,560 --> 01:43:29,320 THE REQUIREMENTS MAY -- THEY MAY 3252 01:43:29,320 --> 01:43:31,040 APPLY IN THOSE CASES SO YOU HAVE 3253 01:43:31,040 --> 01:43:32,200 TO LOOK SPECIFICALLY AT THE 3254 01:43:32,200 --> 01:43:33,400 CONTEXT OF THE INFORMATION BEING 3255 01:43:33,400 --> 01:43:35,720 RETURNED, HOW IT'S BEING 3256 01:43:35,720 --> 01:43:37,000 RETURNED, TO WHOM AND WHAT THE 3257 01:43:37,000 --> 01:43:40,400 URPS PURPOSE OF THE TESTING IS. 3258 01:43:40,400 --> 01:43:41,200 UNFORTUNATELY IT'S NOT THE 3259 01:43:41,200 --> 01:43:42,600 ANSWER I LIKE TO GIVE BUT THE 3260 01:43:42,600 --> 01:43:43,960 BEST ANSWER I CAN GIVE IS IT'S 3261 01:43:43,960 --> 01:43:46,360 BEST TO SPEAK TO THE STUDY STAFF 3262 01:43:46,360 --> 01:43:48,560 ITSELF, AND TALK TO THEM ABOUT 3263 01:43:48,560 --> 01:43:50,360 WHAT PROCESSES THEY'VE PUT IN 3264 01:43:50,360 --> 01:43:52,680 PLACE TO ENABLE RETURN OF 3265 01:43:52,680 --> 01:43:53,240 INFORMATION, BECAUSE YOU'RE 3266 01:43:53,240 --> 01:43:55,080 GOING TO BE IN A SPECIFIC STUDY 3267 01:43:55,080 --> 01:43:56,400 ITSELF AND THEY'VE MADE 3268 01:43:56,400 --> 01:43:57,400 DIFFERENT ARRANGEMENTS FOR DOING 3269 01:43:57,400 --> 01:43:58,200 THAT. 3270 01:43:58,200 --> 01:44:00,600 THE CONTEXT REALLY MATTERS. 3271 01:44:00,600 --> 01:44:02,560 SO THE BEST I CAN DO IS TELL 3272 01:44:02,560 --> 01:44:03,880 YOU, GO MAKE SURE THAT THOSE 3273 01:44:03,880 --> 01:44:05,560 CONCERNS ARE RELATED TO YOUR 3274 01:44:05,560 --> 01:44:07,000 STUDY TEAM, AND MAKE SURE THAT 3275 01:44:07,000 --> 01:44:14,400 THEY HEAR THOSE. 3276 01:44:14,400 --> 01:44:16,080 >>HI. 3277 01:44:16,080 --> 01:44:19,600 DO YOU GUYS ENSURE THE PROPER 3278 01:44:19,600 --> 01:44:21,480 SECURITY OF OUR SPECIMENS AND 3279 01:44:21,480 --> 01:44:23,480 HOW THEY'RE TREATED AND DISPOSED 3280 01:44:23,480 --> 01:44:25,480 OF, AND ARE YOU GUYS REQUIRED TO 3281 01:44:25,480 --> 01:44:26,960 LET US KNOW WHEN THEY ARE BEING 3282 01:44:26,960 --> 01:44:28,360 DISPOSED AND HOW THEY'RE BEING 3283 01:44:28,360 --> 01:44:30,080 DISPOSED? 3284 01:44:30,080 --> 01:44:32,080 >>SO IT'S A GREAT QUESTION, AND 3285 01:44:32,080 --> 01:44:33,040 THE QUESTION HERE IS WHAT 3286 01:44:33,040 --> 01:44:35,560 HAPPENS WITH THE SPECIMENS 3287 01:44:35,560 --> 01:44:35,880 THEMSELVES. 3288 01:44:35,880 --> 01:44:36,960 ALL THAT SHOULD BE SPELLED OUT 3289 01:44:36,960 --> 01:44:38,080 IN THE INFORMED CONSENT. 3290 01:44:38,080 --> 01:44:39,160 THEY SHOULD MAKE YOU AWARE OF 3291 01:44:39,160 --> 01:44:40,440 THAT WHEN YOU'RE COMING INTO THE 3292 01:44:40,440 --> 01:44:42,200 STUDY, WHAT THE DISPOSITION OF 3293 01:44:42,200 --> 01:44:43,800 THOSE SAMPLES ARE GOING TO BE, 3294 01:44:43,800 --> 01:44:45,000 HOW THEY'RE GOING TO STORE THEM 3295 01:44:45,000 --> 01:44:45,760 AND PROTECT THEM. 3296 01:44:45,760 --> 01:44:48,240 HERE AT NIH, WE PUT A PREMIUM ON 3297 01:44:48,240 --> 01:44:49,040 ENSURING CONFIDENTIALITY AND 3298 01:44:49,040 --> 01:44:50,320 PRIVACY OF OUR RESEARCH 3299 01:44:50,320 --> 01:44:51,800 PARTICIPANTS, AND THAT INCLUDES 3300 01:44:51,800 --> 01:44:53,280 ANY SPECIMENS THAT MIGHT BE 3301 01:44:53,280 --> 01:44:55,000 COLLECTED IN THE PROCESS OF THE 3302 01:44:55,000 --> 01:44:56,080 RESEARCH, SO ALL THOSE THINGS 3303 01:44:56,080 --> 01:44:57,600 SHOULD BE SPELLED OUT. 3304 01:44:57,600 --> 01:44:58,880 THERE SHOULD BE PROTECTIONS PUT 3305 01:44:58,880 --> 01:45:00,120 IN PLACE, FOR INSTANCE, TO 3306 01:45:00,120 --> 01:45:03,120 ENSURE YOUR CONFIDENTIALITY. 3307 01:45:03,120 --> 01:45:04,800 THERE ARE OTHER REGULATIONS THAT 3308 01:45:04,800 --> 01:45:07,600 APPLY TO DISPOSITION OF HUMAN 3309 01:45:07,600 --> 01:45:09,680 SPECIMENS, AND I WON'T GET INTO 3310 01:45:09,680 --> 01:45:11,640 LIKE HOW MEDICAL WASTE IS 3311 01:45:11,640 --> 01:45:12,800 DISPOSED OF SPECIFICALLY, BUT 3312 01:45:12,800 --> 01:45:14,600 THERE ARE OTHER PROCESSES THAT 3313 01:45:14,600 --> 01:45:16,760 COME INTO PLAY THAT REGULATE 3314 01:45:16,760 --> 01:45:18,920 THAT. 3315 01:45:18,920 --> 01:45:20,680 THERE ARE ALSO DIFFERENT 3316 01:45:20,680 --> 01:45:21,680 CONSIDERATIONS, I KNOW THERE ARE 3317 01:45:21,680 --> 01:45:23,440 CULTURAL SENSITIVITIES FOR 3318 01:45:23,440 --> 01:45:25,160 DISPOSITION OF SAMPLES, 3319 01:45:25,160 --> 01:45:27,080 ESPECIALLY AMERICAN INDIAN AND 3320 01:45:27,080 --> 01:45:28,000 ALASKA NATIVE POPULATIONS IN 3321 01:45:28,000 --> 01:45:30,280 PARTICULAR SOG THERE ARE OTHER 3322 01:45:30,280 --> 01:45:31,640 CULTURAL CONSIDERATIONS THAT GO 3323 01:45:31,640 --> 01:45:32,640 INTO HOW SPECIMENS ARE 3324 01:45:32,640 --> 01:45:34,360 COLLECTED, STORED, USED AGAIN 3325 01:45:34,360 --> 01:45:39,600 FOR FUTURE OR DISPOSED. 3326 01:45:39,600 --> 01:45:40,360 >>OKAY. 3327 01:45:40,360 --> 01:45:42,120 I THINK IN THE INTEREST OF TIME, 3328 01:45:42,120 --> 01:45:43,360 WE'LL MOVE ON, SO THANK YOU, 3329 01:45:43,360 --> 01:45:43,800 ADAM. 3330 01:45:43,800 --> 01:45:45,720 AND WE'RE NOW GOING TO HEAR FROM 3331 01:45:45,720 --> 01:45:49,480 OUR DISCUSSANT, INGRID HOLM. 3332 01:45:49,480 --> 01:45:50,160 >>ALL RIGHT. 3333 01:45:50,160 --> 01:45:51,000 THANK YOU. 3334 01:45:51,000 --> 01:45:53,240 SO FIRST OF ALL, JUST TO SAY 3335 01:45:53,240 --> 01:45:55,280 THAT WAS A GREAT SESSION THIS 3336 01:45:55,280 --> 01:45:55,600 MORNING. 3337 01:45:55,600 --> 01:45:56,840 WE HAD SOME REALLY GREAT TALKS. 3338 01:45:56,840 --> 01:45:58,280 I THINK WHAT I'M GOING TO TRY TO 3339 01:45:58,280 --> 01:45:58,840 DO IS -- 3340 01:45:58,840 --> 01:45:59,760 >>INGRID? 3341 01:45:59,760 --> 01:46:01,200 >>CAN YOU NOT HEAR ME? 3342 01:46:01,200 --> 01:46:02,640 >>WOULD YOU LIKE TO COME UP TO 3343 01:46:02,640 --> 01:46:03,720 THE FRONT TABLE OR TO THE 3344 01:46:03,720 --> 01:46:04,640 PODIUM? 3345 01:46:04,640 --> 01:46:10,080 >>CAN I BRING MY COMPUTER? 3346 01:46:10,080 --> 01:46:11,200 I HAVE MY NOTE. 3347 01:46:11,200 --> 01:46:21,320 OKAY. 3348 01:46:35,160 --> 01:46:36,640 I THINK MY JOB AS A DISCUSSANT 3349 01:46:36,640 --> 01:46:39,080 IS TO SUMMARIZE WHAT'S KIND OF 3350 01:46:39,080 --> 01:46:40,200 BEEN DISCUSSED IN THESE 3351 01:46:40,200 --> 01:46:41,200 PRESENTATIONS THIS MORNING, AND 3352 01:46:41,200 --> 01:46:42,440 I WILL PROBABLY ADD IN A COUPLE 3353 01:46:42,440 --> 01:46:46,400 OF MY OWN KIND OF THOUGHTS ABOUT 3354 01:46:46,400 --> 01:46:46,760 IT. 3355 01:46:46,760 --> 01:46:48,960 SO I THINK -- SO FIRST OF ALL, I 3356 01:46:48,960 --> 01:46:49,960 THINK ONE OF THE FIRST POINTS 3357 01:46:49,960 --> 01:46:51,880 THAT JEFF MADE IS THIS IDEA OF 3358 01:46:51,880 --> 01:46:52,320 AGGREGATE RESULTS. 3359 01:46:52,320 --> 01:46:53,520 SO THAT'S KIND OF SOMETHING TO 3360 01:46:53,520 --> 01:46:55,480 REALLY THINK ABOUT IN DOING 3361 01:46:55,480 --> 01:46:57,240 STUDIES, IS KIND OF BRINGING IN 3362 01:46:57,240 --> 01:46:58,760 AND RETURNING RESULTS OF THE 3363 01:46:58,760 --> 01:47:01,280 STUDY TO PARTICIPANTS, AND 3364 01:47:01,280 --> 01:47:02,600 THAT'S CERTAINLY VERY IMPORTANT. 3365 01:47:02,600 --> 01:47:04,640 AND WHEN WE THINK ABOUT 3366 01:47:04,640 --> 01:47:05,520 INDIVIDUAL RESULTS THAT'S BEEN 3367 01:47:05,520 --> 01:47:08,240 DISCUSSED WHI QUITE A BIT, I THK 3368 01:47:08,240 --> 01:47:09,680 PEOPLE AT THIS TIME REALLY 3369 01:47:09,680 --> 01:47:10,920 EXPECT TO GET INDIVIDUAL RESULTS 3370 01:47:10,920 --> 01:47:12,480 BACK, AND I THINK AS IT WAS 3371 01:47:12,480 --> 01:47:14,120 MENTIONED 15, 20 YEARS AGO, THIS 3372 01:47:14,120 --> 01:47:15,760 WAS NOT WHERE WE ARE AND THERE'S 3373 01:47:15,760 --> 01:47:17,920 BEEN THIS WHOLE PROCESS, 3374 01:47:17,920 --> 01:47:19,120 PARTICULARLY IN THE AREA OF 3375 01:47:19,120 --> 01:47:20,200 GENOMICS, WHICH IS WHERE WE'VE 3376 01:47:20,200 --> 01:47:21,520 REALLY LEARNED A LOT ABOUT 3377 01:47:21,520 --> 01:47:22,720 RETURN OF RESULTS AND THE VALUE 3378 01:47:22,720 --> 01:47:23,800 OF RETURNING RESULTS TO 3379 01:47:23,800 --> 01:47:24,760 INDIVIDUAL PARTICIPANTS. 3380 01:47:24,760 --> 01:47:26,520 AND WE'VE ALSO TALKED A LOT 3381 01:47:26,520 --> 01:47:31,000 ABOUT PRE RECIPROCITY, TRANSPARY 3382 01:47:31,000 --> 01:47:31,720 AND COMMUNICATION. 3383 01:47:31,720 --> 01:47:33,720 I THINK THOSE ARE THREE OF THE 3384 01:47:33,720 --> 01:47:35,240 KIND OF FOUNDING PILLARS WHEN WE 3385 01:47:35,240 --> 01:47:36,320 THINK ABOUT RETURNING RESULTS 3386 01:47:36,320 --> 01:47:37,880 AND THE IMPORTANCE OF DOING 3387 01:47:37,880 --> 01:47:41,440 THAT. 3388 01:47:41,440 --> 01:47:42,520 WE'VE ALSO TALKED A LITTLE BIT 3389 01:47:42,520 --> 01:47:43,400 ABOUT DIFFERENT KINDS OF RESULTS 3390 01:47:43,400 --> 01:47:43,720 TO RETURN. 3391 01:47:43,720 --> 01:47:46,440 SO WE THINK ABOUT -- AGAIN, 3392 01:47:46,440 --> 01:47:47,440 WE'RE KIND OF DRAWING ON WHAT 3393 01:47:47,440 --> 01:47:48,840 WE'VE LEARNED IN THE AREA OF 3394 01:47:48,840 --> 01:47:49,720 GENETICS, WE THINK ABOUT 3395 01:47:49,720 --> 01:47:51,120 CLINICAL UTILITY, THINGS THAT 3396 01:47:51,120 --> 01:47:52,120 PEOPLE CAN DO, SOMETHING 3397 01:47:52,120 --> 01:47:55,040 ABOUT -- THAT I THINK IN 3398 01:47:55,040 --> 01:47:55,920 PARTICULAR ENVIRONMENTAL 3399 01:47:55,920 --> 01:47:57,200 STUDIES, THERE MAY BE A LOT OF 3400 01:47:57,200 --> 01:47:58,360 COMPONENTS OF KIND OF PERSONAL 3401 01:47:58,360 --> 01:47:58,840 UTILITY. 3402 01:47:58,840 --> 01:48:01,920 AND SO THE BENEFITS OF GETTING 3403 01:48:01,920 --> 01:48:05,720 RESULTS BACK AND EVEN THOUGH YOU 3404 01:48:05,720 --> 01:48:06,680 MAYBE CAN'T CHANGE SOMETHING, 3405 01:48:06,680 --> 01:48:07,880 THEY BRING SOME PERSONAL UTILITY 3406 01:48:07,880 --> 01:48:09,520 TO UNDERSTANDING -- KIND OF 3407 01:48:09,520 --> 01:48:11,680 UNDERSTANDING. 3408 01:48:11,680 --> 01:48:12,880 I THINK AN IMPORTANT ASPECT THAT 3409 01:48:12,880 --> 01:48:14,320 WAS BROUGHT UP WAS THIS IDEA 3410 01:48:14,320 --> 01:48:16,720 THAT KYLE DISCUSSED ABOUT 3411 01:48:16,720 --> 01:48:18,560 EXPECTED VERSUS UNEXPECTED 3412 01:48:18,560 --> 01:48:18,880 RESULTS. 3413 01:48:18,880 --> 01:48:21,240 AND WHEN WE THINK -- SO IN 3414 01:48:21,240 --> 01:48:23,280 GENETICS, WHEN YOU'RE LOOKING AT 3415 01:48:23,280 --> 01:48:24,680 AN ENTIRE -- THE WHOLE KIND OF 3416 01:48:24,680 --> 01:48:26,520 GENOME AND ALL THAT DATA, THERE 3417 01:48:26,520 --> 01:48:27,600 ARE GOING TO BE THINGS IN THERE 3418 01:48:27,600 --> 01:48:28,680 THAT YOU WEREN'T LOOKING FOR 3419 01:48:28,680 --> 01:48:31,560 THAT YOU ARE POTENTIALLY GOING 3420 01:48:31,560 --> 01:48:34,040 TO FIND, AND I THINK THAT MAY BE 3421 01:48:34,040 --> 01:48:35,600 THE SIMILAR KIND OF SITUATION IN 3422 01:48:35,600 --> 01:48:36,520 THE ENVIRONMENTAL REALM. 3423 01:48:36,520 --> 01:48:37,840 SO KYLE AND I HAD DINNER LAST 3424 01:48:37,840 --> 01:48:38,880 NIGHT AND WE WERE KIND OF 3425 01:48:38,880 --> 01:48:40,120 THINKING ABOUT WHAT KIND OF 3426 01:48:40,120 --> 01:48:41,440 UNEXPECTED RESULTS COULD ONE 3427 01:48:41,440 --> 01:48:44,240 HAVE, FOR EXAMPLE, IN 3428 01:48:44,240 --> 01:48:45,680 ENVIRONMENTAL EXPOSURES, AND YOU 3429 01:48:45,680 --> 01:48:48,280 MIGHT FIND AN EXPOSURE IS 3430 01:48:48,280 --> 01:48:50,800 SOMETHING THAT YOU WEREN'T 3431 01:48:50,800 --> 01:48:51,680 EXPECTING THAT SUGGESTS A 3432 01:48:51,680 --> 01:48:52,440 PROBLEM YOU HADN'T REALLY 3433 01:48:52,440 --> 01:48:53,080 THOUGHT ABOUT. 3434 01:48:53,080 --> 01:48:54,400 SO ONE OF THE THINGS THAT WE 3435 01:48:54,400 --> 01:48:56,800 KIND OF THOUGHT ABOUT IS IF, FOR 3436 01:48:56,800 --> 01:48:58,960 EXAMPLE, SUBSTANCE ABUSE, OR A 3437 01:48:58,960 --> 01:49:02,040 CHILD THAT HAD SOME KIND OF -- 3438 01:49:02,040 --> 01:49:04,840 SOMETHING IN THEIR EXPOSURE THAT 3439 01:49:04,840 --> 01:49:06,080 REALLY WAS SOMETHING THAT WAS 3440 01:49:06,080 --> 01:49:07,800 COMING FROM, FOR EXAMPLE, A 3441 01:49:07,800 --> 01:49:09,400 PARENT AND COULD SUGGEST CHILD 3442 01:49:09,400 --> 01:49:10,000 ABUSE. 3443 01:49:10,000 --> 01:49:10,960 THERE'S THESE KINDS OF THINGS 3444 01:49:10,960 --> 01:49:13,160 THAT I THINK IT'S IMPORTANT TO 3445 01:49:13,160 --> 01:49:15,560 THINK ABOUT IN THE ENVIRONMENTAL 3446 01:49:15,560 --> 01:49:16,960 SENSE THAT THERE ALSO MAY BE 3447 01:49:16,960 --> 01:49:19,040 THESE KIND OF UNANTICIPATED 3448 01:49:19,040 --> 01:49:20,480 FINDINGS THAT MAY BE IMPORTANT 3449 01:49:20,480 --> 01:49:24,480 FOR INDIVIDUALS TO KNOW ABOUT 3450 01:49:24,480 --> 01:49:25,080 AND POTENTIALLY HOW YOU WOULD 3451 01:49:25,080 --> 01:49:27,960 LAN DELL THOSE. 3452 01:49:27,960 --> 01:49:28,720 HANDLE THOSE. 3453 01:49:28,720 --> 01:49:30,400 AGAIN WE'RE JUST MAKING UP IDEAS 3454 01:49:30,400 --> 01:49:32,760 BUT WHEN WE'RE THINKING ABOUT 3455 01:49:32,760 --> 01:49:33,880 THE ENVIRONMENTAL -- AREA OF 3456 01:49:33,880 --> 01:49:35,560 ENVIRONMENTAL EXPOSURES. 3457 01:49:35,560 --> 01:49:36,920 SO THERE'S A LOT OF DISCUSSION 3458 01:49:36,920 --> 01:49:41,280 ABOUT BENEFITS AND HARMS, AND I 3459 01:49:41,280 --> 01:49:43,920 THINK CERTAINLY -- WE TALKED A 3460 01:49:43,920 --> 01:49:45,400 LOT ABOUT THAT BUT ONE OF THE 3461 01:49:45,400 --> 01:49:46,880 THINGS THAT KIND OF CAME UP TO 3462 01:49:46,880 --> 01:49:48,040 ME AS PART OF THE DISCUSSION WAS 3463 01:49:48,040 --> 01:49:49,480 THIS IDEA THAT POTENTIALLY YOU 3464 01:49:49,480 --> 01:49:50,720 CAN GET INFORMATION BACK THAT 3465 01:49:50,720 --> 01:49:52,040 YOU CAN'T ACT ON. 3466 01:49:52,040 --> 01:49:53,800 AND SO WE KEPT THINKING ABOUT 3467 01:49:53,800 --> 01:49:55,960 HARMS AND BENEFITS AND THE HARMS 3468 01:49:55,960 --> 01:49:57,080 POTENTIALLY OF GIVING PEOPLE 3469 01:49:57,080 --> 01:50:00,040 INFORMATION THAT'S IMPORTANT BUT 3470 01:50:00,040 --> 01:50:01,400 THEY DON'T HAVE THE RESOURCES, 3471 01:50:01,400 --> 01:50:02,520 FOR EXAMPLE, TO ACT ON IT. 3472 01:50:02,520 --> 01:50:04,520 SO IT'S JUST TO MAKE THE POINT 3473 01:50:04,520 --> 01:50:06,200 THAT BENEFITS AND HARMS IS QUITE 3474 01:50:06,200 --> 01:50:07,800 A BROAD AREA, AND IT'S IMPORTANT 3475 01:50:07,800 --> 01:50:10,760 TO REALLY THINK ABOUT WHAT 3476 01:50:10,760 --> 01:50:11,760 POTENTIAL HARMS THERE COULD BE 3477 01:50:11,760 --> 01:50:12,400 IN COMMUNITIES. 3478 01:50:12,400 --> 01:50:14,720 WHICH GETS BACK TO ALSO THE 3479 01:50:14,720 --> 01:50:15,680 DISCUSSION WE'VE HAD KIND OF OFF 3480 01:50:15,680 --> 01:50:17,080 AND ON HERE ABOUT COMMUNITY 3481 01:50:17,080 --> 01:50:18,520 ENGAGEMENT. 3482 01:50:18,520 --> 01:50:19,600 AND SO REALLY WORKING WITH 3483 01:50:19,600 --> 01:50:21,280 COMMUNITIES AND UNDERSTANDING, 3484 01:50:21,280 --> 01:50:23,680 BECAUSE WE MAY NOT APPRECIATE 3485 01:50:23,680 --> 01:50:25,040 WHAT SOME OF THE BENEFITS AND 3486 01:50:25,040 --> 01:50:27,000 HARMS MIGHT BE TO COMMUNITY 3487 01:50:27,000 --> 01:50:28,360 WITHOUT TALKING TO THEM ABOUT IT 3488 01:50:28,360 --> 01:50:31,840 AND FINDING OUT WHAT THOSE -- 3489 01:50:31,840 --> 01:50:34,760 KIND OF WHAT THOSE BE BENEFITS 3490 01:50:34,760 --> 01:50:38,040 MIGHT BE. 3491 01:50:38,040 --> 01:50:41,800 SO I WANTED TO JUST ADDRESS 3492 01:50:41,800 --> 01:50:43,360 MATT'S QUESTION ABOUT 3493 01:50:43,360 --> 01:50:44,560 PARTICULARLY IN THE AREAS OF 3494 01:50:44,560 --> 01:50:47,360 KIND OF PREGNANCY AND CHILDREN, 3495 01:50:47,360 --> 01:50:49,040 AND KYLE TALKED A LITTLE BIT 3496 01:50:49,040 --> 01:50:50,880 ABOUT THIS ALSO, WHAT ARE THE 3497 01:50:50,880 --> 01:50:51,840 THINGS TO THINK ABOUT. 3498 01:50:51,840 --> 01:50:56,040 AND I THINK THE TWO KIND OF 3499 01:50:56,040 --> 01:50:56,840 AREAS -- TWO AREAS. 3500 01:50:56,840 --> 01:50:59,600 ONE IS THIS IDEA OF GIVING 3501 01:50:59,600 --> 01:51:01,880 INFORMATION ABOUT A CHILD 3502 01:51:01,880 --> 01:51:02,560 WITHOUT -- BEFORE THEY HAVE THE 3503 01:51:02,560 --> 01:51:04,160 CHANCE TO DECIDE IF THEY WANT 3504 01:51:04,160 --> 01:51:04,840 THAT INFORMATION OR NOT. 3505 01:51:04,840 --> 01:51:07,040 SO IN GENETICS, WE TALK A LOT 3506 01:51:07,040 --> 01:51:08,960 ABOUT THAT, RETURNING 3507 01:51:08,960 --> 01:51:10,400 INFORMATION ABOUT CONDITIONS 3508 01:51:10,400 --> 01:51:12,200 THAT ARE ONLY ACTIONABLE IN 3509 01:51:12,200 --> 01:51:13,320 ADULTHOOD AND MAYBE WE SHOULD 3510 01:51:13,320 --> 01:51:14,880 WAIT UNTIL THE CHILD BECOMES AN 3511 01:51:14,880 --> 01:51:17,480 ADULT TO MAKE THOSE DECISIONS, 3512 01:51:17,480 --> 01:51:19,960 AND SO I THINK IN THE KIND OF 3513 01:51:19,960 --> 01:51:21,280 ENVIRONMENTAL EXPOSURES AND THE 3514 01:51:21,280 --> 01:51:23,600 THINGS THAT YOU ARE STUDYING IN 3515 01:51:23,600 --> 01:51:25,160 ECHO, JUST THINKING ABOUT ARE 3516 01:51:25,160 --> 01:51:26,960 THERE KIND OF RESULTS THAT COULD 3517 01:51:26,960 --> 01:51:28,680 BE POSSIBLE THAT YOU WOULD WANT 3518 01:51:28,680 --> 01:51:31,240 TO GIVE A CHILD AN OPPORTUNITY 3519 01:51:31,240 --> 01:51:32,520 TO REACH THE AGE OF MAJORITY 3520 01:51:32,520 --> 01:51:33,880 WHEN THEY CAN MAKE DECISIONS 3521 01:51:33,880 --> 01:51:35,560 ABOUT WHETHER THEY WANT TO KNOW 3522 01:51:35,560 --> 01:51:37,960 ABOUT, AND AGAIN, IT'S GOING TO 3523 01:51:37,960 --> 01:51:40,360 BE VERY DEPENDENT ON WHAT KIND 3524 01:51:40,360 --> 01:51:41,800 OF THINGS YOU'RE FINDING OR 3525 01:51:41,800 --> 01:51:43,880 LOOKING AT BUT SOMETHING TO 3526 01:51:43,880 --> 01:51:46,080 CONSIDER IN THE RETURN OF 3527 01:51:46,080 --> 01:51:47,480 RESULTS IN CHILDREN, WHAT'S KIND 3528 01:51:47,480 --> 01:51:50,800 OF ACTIONABLE FOR THE CHILD IN 3529 01:51:50,800 --> 01:51:53,480 THEIR LIFE. 3530 01:51:53,480 --> 01:51:54,600 THE OTHER WAS THE KIND OF 3531 01:51:54,600 --> 01:51:56,000 QUESTION ABOUT PREGNANCIES AND 3532 01:51:56,000 --> 01:51:59,600 THE BENEFITS, WHAT MATT ASKED OF 3533 01:51:59,600 --> 01:52:00,640 GETTING AFTER THE FACT 3534 01:52:00,640 --> 01:52:00,920 INFORMATION. 3535 01:52:00,920 --> 01:52:02,760 AS YOU WERE TALKING ABOUT THAT, 3536 01:52:02,760 --> 01:52:04,840 I WAS THINKING, I'M A CLINICAL 3537 01:52:04,840 --> 01:52:06,600 GENETICIST SO I RETURN 3538 01:52:06,600 --> 01:52:07,320 INFORMATION TO FAMILIES ALL THE 3539 01:52:07,320 --> 01:52:08,560 TIME ABOUT THEIR CHILD THAT'S 3540 01:52:08,560 --> 01:52:10,080 NOT ACTIONABLE, THE CHILD HAS A 3541 01:52:10,080 --> 01:52:11,080 CONDITION, WE CAN'T CHANGE IT, 3542 01:52:11,080 --> 01:52:13,320 IT IS WHAT IT IS, BUT IT DOES 3543 01:52:13,320 --> 01:52:16,920 INFORM THE KIND OF FUTURE 3544 01:52:16,920 --> 01:52:18,600 PREGNANCIES SO THERE'S ALSO THAT 3545 01:52:18,600 --> 01:52:19,800 KIND OF ASPECT TO THINK ABOUT, 3546 01:52:19,800 --> 01:52:21,120 IS THAT A PREGNANT PERSON, 3547 01:52:21,120 --> 01:52:22,400 THEY'VE BEEN PREGNANT, THEY'VE 3548 01:52:22,400 --> 01:52:23,360 HAD THEIR CHILD, YOU FIND 3549 01:52:23,360 --> 01:52:24,600 SOMETHING LATER, BUT IT MAY 3550 01:52:24,600 --> 01:52:26,560 INFORM THEM HOW THEY VIEW KIND 3551 01:52:26,560 --> 01:52:34,760 OF FUTURE PREGNANCIES. 3552 01:52:34,760 --> 01:52:37,120 ONE OF THE OTHER THINGS I WANTED 3553 01:52:37,120 --> 01:52:40,040 TO KIND OF HIGHLIGHT IS THIS 3554 01:52:40,040 --> 01:52:41,560 ISSUE OF -- THAT JEFF TALKED 3555 01:52:41,560 --> 01:52:42,960 ABOUT WHICH IS FEASIBILITY AND 3556 01:52:42,960 --> 01:52:43,160 VALUE. 3557 01:52:43,160 --> 01:52:45,600 SO THERE'S A LOT OF TALK IN KIND 3558 01:52:45,600 --> 01:52:47,520 OF RESEARCH ABOUT IS THERE AN 3559 01:52:47,520 --> 01:52:49,520 OBLIGATION TO RETURN RESEARCH 3560 01:52:49,520 --> 01:52:50,840 RESULTS WE DO MOST OF THE TIME, 3561 01:52:50,840 --> 01:52:52,280 BUT THERE MAY BE TIMES WHEN IT'S 3562 01:52:52,280 --> 01:52:53,640 JUST NOT FEASIBLE. 3563 01:52:53,640 --> 01:52:54,840 SO THINKING ABOUT THE 3564 01:52:54,840 --> 01:52:56,400 FEASIBILITY AND FEASIBILITY IS 3565 01:52:56,400 --> 01:53:00,360 WHAT DOES IT COST, HOW DO YOU 3566 01:53:00,360 --> 01:53:03,360 FIND PEOPLE, HOW DO YOU 3567 01:53:03,360 --> 01:53:04,000 RETURN -- IT'S REALLY IMPORTANT 3568 01:53:04,000 --> 01:53:04,880 TO KIND OF THINK ABOUT THIS 3569 01:53:04,880 --> 01:53:06,640 ISSUE OF FEASIBILITY WHEN YOU'RE 3570 01:53:06,640 --> 01:53:07,920 DESIGNING YOUR STUDY, AND THEN 3571 01:53:07,920 --> 01:53:09,000 THINKING ABOUT WHAT THE VALUE IS 3572 01:53:09,000 --> 01:53:10,680 TO THE PARTICIPANTS. 3573 01:53:10,680 --> 01:53:16,880 SO WE HAD KIND OF, I THINK, SOME 3574 01:53:16,880 --> 01:53:17,680 RECOMMENDATIONS THAT MAYBE KIND 3575 01:53:17,680 --> 01:53:19,520 OF COME OUT OF THIS, THIS 3576 01:53:19,520 --> 01:53:20,920 DISCUSSION, SO ONE OF THEM IS 3577 01:53:20,920 --> 01:53:23,000 BEFORE THE RESEARCH BEGINS 3578 01:53:23,000 --> 01:53:24,400 GETTING PARTICIPANT INPUT INTO 3579 01:53:24,400 --> 01:53:27,480 KIND OF ALL ASPECTS OF RETURN OF 3580 01:53:27,480 --> 01:53:28,800 RESULTS, WHAT DO THEY WANT, HOW 3581 01:53:28,800 --> 01:53:30,440 DO THEY WANT IT, WHAT ARE THEY 3582 01:53:30,440 --> 01:53:31,960 INTERESTED IN, WHAT'S THEIR 3583 01:53:31,960 --> 01:53:32,920 VALUES, WHAT ARE THE BENEFITS 3584 01:53:32,920 --> 01:53:34,240 AND HARMS TO THEM, AND THAT'S 3585 01:53:34,240 --> 01:53:37,200 PART OF THIS WHOLE COMMUNITY 3586 01:53:37,200 --> 01:53:38,480 ENGAGEMENT IS REALLY ENGAGING 3587 01:53:38,480 --> 01:53:40,000 THE COMMUNITY AHEAD OF TIME. 3588 01:53:40,000 --> 01:53:41,360 COMMUNITIES ARE GOING TO BE 3589 01:53:41,360 --> 01:53:42,120 DIFFERENT. 3590 01:53:42,120 --> 01:53:43,240 NOT EVERY COMMUNITY IS GOING TO 3591 01:53:43,240 --> 01:53:46,840 HAVE THE SAME CONCERNS. 3592 01:53:46,840 --> 01:53:49,000 SO THAT'S KIND OF GETTING 3593 01:53:49,000 --> 01:53:50,360 PARTICIPANT VIEWS AHEAD OF TIME, 3594 01:53:50,360 --> 01:53:52,880 AND THE OTHER IS TO JUST BE SURE 3595 01:53:52,880 --> 01:53:55,920 THAT YOU PROSPECTIVELY HAVE A 3596 01:53:55,920 --> 01:53:57,320 PLAN OF HOW TO RETURN RESULTS 3597 01:53:57,320 --> 01:53:58,520 ABOUT WHAT YOU'RE GOING TO -- 3598 01:53:58,520 --> 01:54:01,240 WHAT ARE THE RESULTS, WHAT ARE 3599 01:54:01,240 --> 01:54:02,160 UNEXPECTED RESULTS, HOW ARE YOU 3600 01:54:02,160 --> 01:54:03,760 GOING TO HANDLE KIND OF BOTH 3601 01:54:03,760 --> 01:54:06,840 CATEGORIES OF RESULTS BEFORE YOU 3602 01:54:06,840 --> 01:54:08,800 GO INTO A STUDY. 3603 01:54:08,800 --> 01:54:10,880 THE NEXT PIECE OF IT IS REALLY 3604 01:54:10,880 --> 01:54:12,160 STUDYING THE RETURN OF RESULTS 3605 01:54:12,160 --> 01:54:14,360 AS AN ENTERPRISE IN AND OF 3606 01:54:14,360 --> 01:54:14,600 ITSELF. 3607 01:54:14,600 --> 01:54:15,960 AND I THINK KYLE KIND OF 3608 01:54:15,960 --> 01:54:17,520 MENTIONED THIS, THE IDEA OF NOW 3609 01:54:17,520 --> 01:54:19,040 YOU'RE RETURNING RESULTS, LET'S 3610 01:54:19,040 --> 01:54:19,760 GET THE OUTCOMES. 3611 01:54:19,760 --> 01:54:22,200 A LOT OF US, I THINK, IN THE 3612 01:54:22,200 --> 01:54:24,280 ROOM WHO HAVE WORKED IN GENETICS 3613 01:54:24,280 --> 01:54:25,760 HAVE SPENT A LOT OF TIME DOING 3614 01:54:25,760 --> 01:54:27,320 SURVEYS AND INTERVIEWS AND 3615 01:54:27,320 --> 01:54:28,320 INTERACTING WITH PARTICIPANTS 3616 01:54:28,320 --> 01:54:29,600 AFTER THEY'VE ACTUALLY GOTTEN 3617 01:54:29,600 --> 01:54:31,680 RESULTS BACK OR HAVE BEEN IN A 3618 01:54:31,680 --> 01:54:33,040 STUDY AND HAVEN'T GOTTEN RESULTS 3619 01:54:33,040 --> 01:54:34,160 BACK TO REALLY LOOK AT WHAT THAT 3620 01:54:34,160 --> 01:54:36,040 LOOKS LIKE, WHAT ARE THE IMPACTS 3621 01:54:36,040 --> 01:54:37,240 ON PARTICIPANTS, ALSO WHAT ARE 3622 01:54:37,240 --> 01:54:39,200 THE IMPACTS ON CLINICIANS, ON 3623 01:54:39,200 --> 01:54:40,640 THE HEALTHCARE SYSTEM, THE 3624 01:54:40,640 --> 01:54:41,960 ECONOMIC IMPACTS, THE FAMILIES, 3625 01:54:41,960 --> 01:54:44,240 I MEAN, IT'S REALLY THE COMEUNT, 3626 01:54:44,240 --> 01:54:45,000 IT'S REALLY EVERYBODY. 3627 01:54:45,000 --> 01:54:47,520 SO THE IMPORTANCE OF DESIGNING 3628 01:54:47,520 --> 01:54:52,560 STUDIES TO LOOK AT WHAT THOSE 3629 01:54:52,560 --> 01:54:54,240 ARE. 3630 01:54:54,240 --> 01:54:55,080 FINALLY SOMETHING ABOUT THE 3631 01:54:55,080 --> 01:54:59,800 WHOLE REGULATORY PIECE OF IT, I 3632 01:54:59,800 --> 01:55:02,440 THINK A LOT OF WHAT ADAM TALKED 3633 01:55:02,440 --> 01:55:03,640 ABOUT, UNDERSTANDING, ONE THE 3634 01:55:03,640 --> 01:55:05,360 PARTICIPANTS MENTIONED THAT 3635 01:55:05,360 --> 01:55:06,560 REGULATIONS VARY AT DIFFERENT 3636 01:55:06,560 --> 01:55:08,880 INSTITUTIONS AND ALL THE ECHO 3637 01:55:08,880 --> 01:55:09,960 STUDIES, THERE MAY BE DIFFERENT 3638 01:55:09,960 --> 01:55:11,120 KIND OF ASPECTS OF THE 3639 01:55:11,120 --> 01:55:12,360 REGULATIONS AND JUST HOW DOES 3640 01:55:12,360 --> 01:55:14,360 THAT FIT INTO WHAT YOU'RE 3641 01:55:14,360 --> 01:55:14,600 RETURNING. 3642 01:55:14,600 --> 01:55:16,280 AND AGAIN, GENETICS IS A LITTLE 3643 01:55:16,280 --> 01:55:18,600 BIT PROBABLY OF A CONCRETE SPACE 3644 01:55:18,600 --> 01:55:22,080 AND SO WE HAVE THIS VERY CLEAR 3645 01:55:22,080 --> 01:55:27,120 LABORATORY TESTS, FDA, HAVE TO 3646 01:55:27,120 --> 01:55:27,720 CLIA-CONFIRM SOMETHING BEFORE 3647 01:55:27,720 --> 01:55:28,960 YOU RETURN IT, THAT TYPE OF 3648 01:55:28,960 --> 01:55:29,920 THING, AND JUST UNDERSTANDING 3649 01:55:29,920 --> 01:55:31,760 WHAT THE REGULATORY REQUIREMENTS 3650 01:55:31,760 --> 01:55:36,160 ARE GOING TO BE IN -- KIND OF IN 3651 01:55:36,160 --> 01:55:36,920 YOUR STUDIES. 3652 01:55:36,920 --> 01:55:38,880 SO THAT'S MY KIND OF TRYING TO 3653 01:55:38,880 --> 01:55:39,880 BRING EVERYTHING TOGETHER, AND 3654 01:55:39,880 --> 01:55:41,760 I'M HAPPY IF I DON'T KNOW IF 3655 01:55:41,760 --> 01:55:43,400 KYLE, JEFF OR ADAM, ANYTHING YOU 3656 01:55:43,400 --> 01:55:44,800 WANT TO SAY IN PARTICULAR, 3657 01:55:44,800 --> 01:55:46,320 TAKE-HOME MESSAGES OR TAKE ANY 3658 01:55:46,320 --> 01:55:50,960 QUESTIONS. 3659 01:55:50,960 --> 01:55:52,440 >>THANKS, INGRID. 3660 01:55:52,440 --> 01:55:53,360 I THINK WE'LL MOVE TO THE OPEN 3661 01:55:53,360 --> 01:55:56,200 DISCUSSION NOW. 3662 01:55:56,200 --> 01:55:57,600 >>HOW ABOUT INVITING OUR 3663 01:55:57,600 --> 01:55:58,920 SPEAKERS AND OUR DISCUSSANT TO 3664 01:55:58,920 --> 01:55:59,560 SIT AT THE HEAD TABLE? 3665 01:55:59,560 --> 01:56:04,800 >>YES, THAT WOULD BE GREAT. 3666 01:56:04,800 --> 01:56:06,880 >>KYLE, JEFF, ADAM? 3667 01:56:06,880 --> 01:56:08,160 ONE OF THE THINGS YOU MAY HAVE 3668 01:56:08,160 --> 01:56:10,720 NOTICED IN THE AGENDA IS WE'VE 3669 01:56:10,720 --> 01:56:12,520 CARVED OUT LOADS OF TIME FOR 3670 01:56:12,520 --> 01:56:13,720 DISCUSSION BECAUSE WE THINK 3671 01:56:13,720 --> 01:56:15,280 THAT, YOU KNOW, THE TALKS ARE 3672 01:56:15,280 --> 01:56:16,920 THINGS TO SORT OF GENERATE YOUR 3673 01:56:16,920 --> 01:56:18,040 IDEAS, AND THIS IS WHERE A LOT 3674 01:56:18,040 --> 01:56:20,360 OF THE MEAT OCCURS, AND WE 3675 01:56:20,360 --> 01:56:23,440 REALLY GET TO A LOT OF THESE 3676 01:56:23,440 --> 01:56:26,160 ISSUES THAT WILL HELP US DERIVE 3677 01:56:26,160 --> 01:56:27,040 OUR RECOMMENDATIONS GOING 3678 01:56:27,040 --> 01:56:28,040 FORWARD. 3679 01:56:28,040 --> 01:56:33,080 SO HOPING FOR REALLY LOTS OF 3680 01:56:33,080 --> 01:56:34,600 MEATY DISCUSSION DURING THESE 3681 01:56:34,600 --> 01:56:36,120 DISCUSSION PERIODS. 3682 01:56:36,120 --> 01:56:38,080 >>AND IF ANYBODY ONLINE HAS 3683 01:56:38,080 --> 01:56:39,480 QUESTIONS, GO AHEAD AND PUT THEM 3684 01:56:39,480 --> 01:56:40,640 IN THE Q & A. 3685 01:56:40,640 --> 01:56:42,120 SOUNDS LIKE THERE MIGHT ALREADY 3686 01:56:42,120 --> 01:56:42,960 BE SOME. 3687 01:56:42,960 --> 01:56:45,520 >>YES. 3688 01:56:45,520 --> 01:56:47,160 THE FIRST QUESTION IS A TWO-PART 3689 01:56:47,160 --> 01:56:47,760 QUESTION. 3690 01:56:47,760 --> 01:56:50,160 DOES REPORTING INCIDENTAL 3691 01:56:50,160 --> 01:56:53,400 FINDINGS TO A PARTICIPANT 3692 01:56:53,400 --> 01:56:55,800 QUALIFY AS REPORTING 3693 01:56:55,800 --> 01:56:56,400 PATIENT-SPECIFIC RESULTS SUCH 3694 01:56:56,400 --> 01:56:58,440 THAT A RESEARCH LAB NO LONGER 3695 01:56:58,440 --> 01:57:01,640 QUALIFIES FOR THE EXCEPTION? 3696 01:57:01,640 --> 01:57:03,840 SO IF YOU INTEND TO PROVIDE 3697 01:57:03,840 --> 01:57:05,680 INCIDENTAL FINDINGS, EVEN IF 3698 01:57:05,680 --> 01:57:07,880 NONE END UP OCCURRING, DO YOU 3699 01:57:07,880 --> 01:57:11,080 HAVE TO USE A CLIA-CERTIFIED LAB 3700 01:57:11,080 --> 01:57:16,200 OR ASSAYS? 3701 01:57:16,200 --> 01:57:18,040 >>SO I'LL BE THE FIRST TO CHIME 3702 01:57:18,040 --> 01:57:18,920 IN, I GUESS. 3703 01:57:18,920 --> 01:57:23,160 THE REGULATIONS DON'T ACTUALLY 3704 01:57:23,160 --> 01:57:24,400 DIFFERENTIATE BETWEEN WHETHER 3705 01:57:24,400 --> 01:57:25,520 THEY'RE INCIDENTAL OR PRIMARY 3706 01:57:25,520 --> 01:57:25,800 RESULTS. 3707 01:57:25,800 --> 01:57:27,120 SO IF YOU'RE RETURNING 3708 01:57:27,120 --> 01:57:28,320 INCIDENTAL FINDINGS, YOU'RE 3709 01:57:28,320 --> 01:57:29,520 RETURNING FINDINGS. 3710 01:57:29,520 --> 01:57:31,480 THE QUESTION IS WHETHER OR NOT 3711 01:57:31,480 --> 01:57:33,400 YOU'RE UNDER THE REQUIREMENT OR 3712 01:57:33,400 --> 01:57:37,400 NOT GG IS GOING TO DEPEND ON TE 3713 01:57:37,400 --> 01:57:38,840 CONTEXT ORIS BEING IF THEY'RE 3714 01:57:38,840 --> 01:57:39,560 GOING TO COME IN. 3715 01:57:39,560 --> 01:57:42,480 IF YOU'RE LOOKING UNDER -- YOU 3716 01:57:42,480 --> 01:57:43,360 HAVE TO CONSIDER CLIE YA 3717 01:57:43,360 --> 01:57:44,680 REQUIREMENTS, YOU'RE GOING TO 3718 01:57:44,680 --> 01:57:48,640 HAVE TO CONSIDER FDA FINDINGS AS 3719 01:57:48,640 --> 01:57:51,160 WELL SO FINDINGS ARE -- ALL KIND 3720 01:57:51,160 --> 01:57:52,120 OF WORK TOGETHER. 3721 01:57:52,120 --> 01:57:53,880 >>I JUST WANTED TO EMPHASIZE 3722 01:57:53,880 --> 01:57:56,480 SOMETHING INGRID HINTED AT, 3723 01:57:56,480 --> 01:57:59,880 WHICH IS THERE'S A PROCESS IN 3724 01:57:59,880 --> 01:58:04,480 GENOMICS FOR GENERATING SORT OF 3725 01:58:04,480 --> 01:58:05,800 AN INITIAL FINDING OFTEN IN SORT 3726 01:58:05,800 --> 01:58:08,000 OF A MORE KIND OF CUTTING EDGE 3727 01:58:08,000 --> 01:58:09,520 TECHNOLOGY THAT IT'S NOT CLIA 3728 01:58:09,520 --> 01:58:11,600 CERTIFIED, IT'S SORT OF NOWHERE 3729 01:58:11,600 --> 01:58:13,440 NEAR FDA EVALUATION, BUT IT'S A 3730 01:58:13,440 --> 01:58:17,200 RESEARCH TYPE OF THING, AND THEN 3731 01:58:17,200 --> 01:58:19,280 USING THAT INFORMATION TO THEN 3732 01:58:19,280 --> 01:58:21,320 TAKE TO A MORE STANDARD 3733 01:58:21,320 --> 01:58:23,320 TECHNOLOGY THAT HAS BEEN 3734 01:58:23,320 --> 01:58:25,040 FDA-VALIDATED THAT IS OPERATED 3735 01:58:25,040 --> 01:58:27,960 IN A CLIA SETTING, AND USING 3736 01:58:27,960 --> 01:58:29,840 THAT INFORMATION TO RETURN, AND 3737 01:58:29,840 --> 01:58:31,720 SO I THINK ONE QUESTION THAT WE 3738 01:58:31,720 --> 01:58:32,920 SHOULD KEEP OPEN AND THINKING 3739 01:58:32,920 --> 01:58:34,600 ABOUT THESE OTHER KINDS OF 3740 01:58:34,600 --> 01:58:35,760 RESULTS IS ARE THERE WAYS TO 3741 01:58:35,760 --> 01:58:39,920 SORT OF DO A TWO-STEP PROCESS, 3742 01:58:39,920 --> 01:58:42,040 AND I THINK -- ADAM, YOU SHOULD 3743 01:58:42,040 --> 01:58:43,520 REALLY WEIGH IN HERE, THE 3744 01:58:43,520 --> 01:58:44,640 INTERPRETATION IS OFTEN THAT AS 3745 01:58:44,640 --> 01:58:47,240 LONG AS I'M GENERATING THE 3746 01:58:47,240 --> 01:58:48,560 FINDINGS SORT OF NOT IN A CLIA 3747 01:58:48,560 --> 01:58:50,000 ENVIRONMENT BUT I HAVE A PROCESS 3748 01:58:50,000 --> 01:58:53,280 TO CLIA VERIFY IT BEFORE IT 3749 01:58:53,280 --> 01:58:54,720 ACTUALLY GOES TO A PATIENT OR 3750 01:58:54,720 --> 01:58:55,240 HEALTHCARE PROVIDER OR 3751 01:58:55,240 --> 01:58:57,760 SOMETHING, THAT THAT IS PROBABLY 3752 01:58:57,760 --> 01:58:58,120 OKAY. 3753 01:58:58,120 --> 01:58:59,560 BUT IF THAT PROCESS REQUIRES ME 3754 01:58:59,560 --> 01:59:00,880 TO TAKE THAT SORT OF UNCERTAIN 3755 01:59:00,880 --> 01:59:02,480 INFORMATION, RETURN TO A 3756 01:59:02,480 --> 01:59:03,360 PARTICIPANT, THEN THE 3757 01:59:03,360 --> 01:59:04,720 PARTICIPANT NEEDS TO GO TO A 3758 01:59:04,720 --> 01:59:07,320 HEALTHCARE PROVIDER TO GET IT 3759 01:59:07,320 --> 01:59:08,400 VERIFIED, THAT'S PROBABLY 3760 01:59:08,400 --> 01:59:09,800 PROBLEMATIC FROM A CLIA 3761 01:59:09,800 --> 01:59:14,560 PERSPECTIVE. 3762 01:59:14,560 --> 01:59:16,720 >>THE IDEA OF CONFIRMATORY 3763 01:59:16,720 --> 01:59:18,240 TESTING IS A BIG ONE, AND THAT'S 3764 01:59:18,240 --> 01:59:20,120 ACTUALLY BEEN USED IN THE 3765 01:59:20,120 --> 01:59:20,760 GENETICS SPACE FOR A LONG TIME, 3766 01:59:20,760 --> 01:59:25,120 WHICH IS THINKING ABOUT 3767 01:59:25,120 --> 01:59:26,680 CLINICALLY ACTIONABLE RESULTS TO 3768 01:59:26,680 --> 01:59:27,160 BE RETURNED. 3769 01:59:27,160 --> 01:59:28,520 I THINK THE ONLY PROBE THAT 3770 01:59:28,520 --> 01:59:29,880 COMES IN WITH IT IS MANY TYPES 3771 01:59:29,880 --> 01:59:32,800 OF TESTS MAY NOT BE ABLE TO BE 3772 01:59:32,800 --> 01:59:34,360 CONFIRMED IN A CLIA CERTIFIED 3773 01:59:34,360 --> 01:59:34,560 LAB. 3774 01:59:34,560 --> 01:59:36,840 SO WHAT DO YOU DO ABOUT THOSE? 3775 01:59:36,840 --> 01:59:38,800 AND I'M NOT SAYING I HAVE AN 3776 01:59:38,800 --> 01:59:40,000 ANSWER FOR THIS BUT THAT'S JUST 3777 01:59:40,000 --> 01:59:41,320 ONE OF THOSE CAVEATS THAT COMES 3778 01:59:41,320 --> 01:59:42,560 IN WITH WHAT YOU'RE TRYING TO 3779 01:59:42,560 --> 01:59:43,760 RETURN. 3780 01:59:43,760 --> 01:59:45,480 BUT I AGREE WITH THE REST OF 3781 01:59:45,480 --> 01:59:46,800 WHAT YOU STATED, IF YOU ARE 3782 01:59:46,800 --> 01:59:48,240 GOING TO CONFIRM IT BEFORE 3783 01:59:48,240 --> 01:59:49,840 RETURNING, IT'S ACTUALLY BEING 3784 01:59:49,840 --> 01:59:50,960 RETURNED OUT OF THE CLIA LAB, 3785 01:59:50,960 --> 01:59:52,160 THERE ARE NO PROBLEMS WITH DOING 3786 01:59:52,160 --> 01:59:54,800 THAT. 3787 01:59:54,800 --> 01:59:56,080 >>I GUESS I WOULD SAY THAT THIS 3788 01:59:56,080 --> 01:59:59,080 IS SUCH A HUGE AREA OF 3789 01:59:59,080 --> 02:00:00,720 COMPLEXITY AND DEBATE. 3790 02:00:00,720 --> 02:00:03,200 AND I WOULD MAKE SOME 3791 02:00:03,200 --> 02:00:04,400 DISTINCTION BETWEEN SO-CALLED 3792 02:00:04,400 --> 02:00:05,160 SECONDARY RESULTS THAT YOU KNOW 3793 02:00:05,160 --> 02:00:08,000 YOU'RE GOING TO GET, THEY'RE NOT 3794 02:00:08,000 --> 02:00:10,640 WHAT YOU'RE REALLY LOOKING TO 3795 02:00:10,640 --> 02:00:11,960 FOR, THE PURPOSE OF THE 3796 02:00:11,960 --> 02:00:14,360 RESEARCH, BUT THEY'RE 3797 02:00:14,360 --> 02:00:16,200 ANTICIPATABLE FINDINGS, THEN 3798 02:00:16,200 --> 02:00:18,600 THERE'S TRULY UNANTICIPATABLE 3799 02:00:18,600 --> 02:00:20,240 FINDINGS. 3800 02:00:20,240 --> 02:00:21,360 CMS HAS BEEN QUITE CLEAR ABOUT 3801 02:00:21,360 --> 02:00:23,480 THIS TO SAY ANY RESPONSE TO 3802 02:00:23,480 --> 02:00:24,240 RESEARCH RESULTS AND 3803 02:00:24,240 --> 02:00:26,280 COMMUNICATION OF ANY RESULTS TO 3804 02:00:26,280 --> 02:00:27,840 PARTICIPANTS IS PROHIBITED IN A 3805 02:00:27,840 --> 02:00:28,480 NON-CLIA LAB. 3806 02:00:28,480 --> 02:00:30,760 AND THAT MEANS SAYING WE FOUND 3807 02:00:30,760 --> 02:00:31,880 SOMETHING BUT WE NEED A NEW 3808 02:00:31,880 --> 02:00:34,480 SAMPLE TO BE CONFIRMED IN A CLIA 3809 02:00:34,480 --> 02:00:36,320 LAB BEFORE WE CAN GIVE YOU 3810 02:00:36,320 --> 02:00:37,000 SPECIFIC RESULTS. 3811 02:00:37,000 --> 02:00:38,120 I THINK THAT'S WHAT 3812 02:00:38,120 --> 02:00:38,880 INVESTIGATORS ARE COMMONLY 3813 02:00:38,880 --> 02:00:41,960 DOING. 3814 02:00:41,960 --> 02:00:45,560 I THINK SACHARP AND THE NATIONAL 3815 02:00:45,560 --> 02:00:46,520 ACADEMY SAID THAT'S ETHICALLY 3816 02:00:46,520 --> 02:00:47,360 APPROPRIATE. 3817 02:00:47,360 --> 02:00:49,600 I THINK IF YOU TIE THE 3818 02:00:49,600 --> 02:00:50,200 REGULATORS DOWN, THEY WILL SAY 3819 02:00:50,200 --> 02:00:52,000 THAT'S NOT CONSISTENT WITH THE 3820 02:00:52,000 --> 02:00:53,320 REGS, BUT AT THE SAME TIME, I'M 3821 02:00:53,320 --> 02:00:55,000 NOT AWARE THAT THEY'RE 3822 02:00:55,000 --> 02:00:56,240 SANCTIONING ANYBODY FOR WHAT IS 3823 02:00:56,240 --> 02:00:57,680 COMMONLY GOING ON OUT THERE. 3824 02:00:57,680 --> 02:01:02,280 SO I THINK IT'S STILL A AREA 3825 02:01:02,280 --> 02:01:03,200 THAT NEEDS TO BE THOUGHT THROUGH 3826 02:01:03,200 --> 02:01:04,920 IN THE CONTEXT OF EACH 3827 02:01:04,920 --> 02:01:07,440 LABORATORY ANALYSIS THAT YOU'RE 3828 02:01:07,440 --> 02:01:08,520 DOING AND WHETHER YOU'RE GOING 3829 02:01:08,520 --> 02:01:10,400 TO GET SECONDARY OR 3830 02:01:10,400 --> 02:01:11,160 UNANTICIPATED RESULTS AND HOW 3831 02:01:11,160 --> 02:01:18,920 YOU'RE GOING TO DEAL WITH THOSE. 3832 02:01:18,920 --> 02:01:20,320 >>TWO POINTS. 3833 02:01:20,320 --> 02:01:22,200 FOR THOSE OF US WHO ARE HEARING 3834 02:01:22,200 --> 02:01:23,520 IMPAIRED CAN I ASK PEOPLE TO 3835 02:01:23,520 --> 02:01:24,600 KEEP THE MICROPHONES CLOSE TO 3836 02:01:24,600 --> 02:01:25,000 THEIR MOUTHS? 3837 02:01:25,000 --> 02:01:26,240 IT'S REALLY HARD TO HEAR IN THE 3838 02:01:26,240 --> 02:01:28,000 ROOM. 3839 02:01:28,000 --> 02:01:29,760 BUT I ALSO WANTED TO KNOW FROM 3840 02:01:29,760 --> 02:01:33,760 THE LEGAL PERSPECTIVE, IF YOU'RE 3841 02:01:33,760 --> 02:01:35,680 TALKING ABOUT PARTNERED 3842 02:01:35,680 --> 02:01:38,360 RESEARCH, CAN IT BE WRITTEN INTO 3843 02:01:38,360 --> 02:01:41,240 A CONSENT FORM THAT IN SOME WAY 3844 02:01:41,240 --> 02:01:43,760 MAKES THAT MORE OF A CONTRACTUAL 3845 02:01:43,760 --> 02:01:46,280 OBLIGATION IF YOU'RE SEEN AS 3846 02:01:46,280 --> 02:01:47,560 PARTNERING WITH THE COMMUNITY 3847 02:01:47,560 --> 02:01:50,440 AND WITH THE PARTICIPANTS IN 3848 02:01:50,440 --> 02:01:52,080 GENERATING THOSE RESULTS AND THE 3849 02:01:52,080 --> 02:01:54,240 PARTICIPANTS ARE SIGNING OFF ON 3850 02:01:54,240 --> 02:01:56,560 SOMETHING THAT THEY EXPECT A 3851 02:01:56,560 --> 02:01:58,560 RESPONSE FROM THAT? 3852 02:01:58,560 --> 02:02:00,600 HOW WOULD THAT -- IS THAT ONE 3853 02:02:00,600 --> 02:02:04,440 STRATEGY TO MAYBE TRY AND -- I 3854 02:02:04,440 --> 02:02:06,040 MEAN, CHANGING REGULATIONS IS 50 3855 02:02:06,040 --> 02:02:09,480 YEARS DOWN THE ROAD. 3856 02:02:09,480 --> 02:02:11,880 SO WHAT I'M LOOKING FOR IS, IS 3857 02:02:11,880 --> 02:02:14,040 THERE A WAY WE COULD HAVE A 3858 02:02:14,040 --> 02:02:16,040 STOPGAP MEASURE THAT WOULD MEET 3859 02:02:16,040 --> 02:02:16,920 THE LEGAL REQUIREMENTS AND 3860 02:02:16,920 --> 02:02:18,520 RESPECT THE PARTICIPANTS AND THE 3861 02:02:18,520 --> 02:02:20,640 RESEARCHERS NEED TO RETURN 3862 02:02:20,640 --> 02:02:26,120 RESULTS? 3863 02:02:26,120 --> 02:02:28,280 >>I'M GOING TO ANSWER A 3864 02:02:28,280 --> 02:02:28,920 SLIGHTLY DIFFERENT QUESTION AND 3865 02:02:28,920 --> 02:02:30,320 IT MORE ABOUT THE PARTNERING, 3866 02:02:30,320 --> 02:02:31,600 BECAUSE I THINK THERE IS -- 3867 02:02:31,600 --> 02:02:34,520 THERE ARE PATHWAYS THAT CAN BE 3868 02:02:34,520 --> 02:02:34,760 TAKEN. 3869 02:02:34,760 --> 02:02:36,600 SO THE REGULATIONS APPLY TO THE 3870 02:02:36,600 --> 02:02:39,880 LAB AND THE PURPOSE OF THE 3871 02:02:39,880 --> 02:02:40,120 TESTING. 3872 02:02:40,120 --> 02:02:42,320 OTHER AGREEMENTS AREN'T 3873 02:02:42,320 --> 02:02:43,520 NECESSARILY GOING TO FACTOR INTO 3874 02:02:43,520 --> 02:02:44,600 THAT, BUT THERE ARE PATHWAYS 3875 02:02:44,600 --> 02:02:45,480 THAT CAN BE TAKEN. 3876 02:02:45,480 --> 02:02:47,720 AS A RESEARCH LAB, YOU CANNESE 3877 02:02:47,720 --> 02:02:49,240 LEGAL PARTNER WITH SOME OTHER 3878 02:02:49,240 --> 02:02:51,320 LABORATORY THAT IS CLIA 3879 02:02:51,320 --> 02:02:52,600 CERTIFIED TO HAVE THOSE TESTS 3880 02:02:52,600 --> 02:02:53,120 RUN THERE. 3881 02:02:53,120 --> 02:02:54,720 AND IT COULD BE A RESEARCH LAB 3882 02:02:54,720 --> 02:02:56,480 THAT'S CLIA CERTIFIED, IT COULD 3883 02:02:56,480 --> 02:02:58,240 BE A CLINICAL LAB THAT'S CLIA 3884 02:02:58,240 --> 02:02:58,800 CERTIFIED. 3885 02:02:58,800 --> 02:02:59,640 THOSE DIFFERENT PATHWAYS ARE 3886 02:02:59,640 --> 02:03:01,640 AVAILABLE FOR THE RESEARCH 3887 02:03:01,640 --> 02:03:03,680 ITSELF TO TAKE PLACE. 3888 02:03:03,680 --> 02:03:06,840 SO IF YOU'VE GOT -- I'M NOT SURE 3889 02:03:06,840 --> 02:03:09,920 WHO'S SITTING AROUND THE ROOM 3890 02:03:09,920 --> 02:03:11,440 THAT'S AT A CLIA LAB, BUT A 3891 02:03:11,440 --> 02:03:13,040 RESEARCHER THAT'S BEEN A 3892 02:03:13,040 --> 02:03:14,240 NON-CLIA CERTIFIED LAB THAT 3893 02:03:14,240 --> 02:03:15,600 WANTS TO DO TESTING COULD 3894 02:03:15,600 --> 02:03:16,320 PARTNER WITH SOMEBODY ELSE WHO 3895 02:03:16,320 --> 02:03:18,800 IS A CLIA CERTIFIED LAB AND HAVE 3896 02:03:18,800 --> 02:03:22,320 THOSE RESULTS CREATED THERE, AND 3897 02:03:22,320 --> 02:03:25,240 THEN RETURN FROM THAT 3898 02:03:25,240 --> 02:03:26,360 LABORATORY, THAT WOULD ACTUALLY 3899 02:03:26,360 --> 02:03:26,880 MEET THE REQUIREMENTS. 3900 02:03:26,880 --> 02:03:28,160 SO THERE ARE DIFFERENT PATHWAYS 3901 02:03:28,160 --> 02:03:29,440 THAT COULD BE TAKEN, EVEN IF 3902 02:03:29,440 --> 02:03:30,560 YOU'RE NOT CLIA CERTIFIED 3903 02:03:30,560 --> 02:03:32,960 YOURSELF. 3904 02:03:32,960 --> 02:03:37,600 >>BUT THE CLIA LABORATORY WAS 3905 02:03:37,600 --> 02:03:38,840 ONLY ONE PART OF THE REGULATIONS 3906 02:03:38,840 --> 02:03:40,440 THAT YOU WENT THROUGH THAT 3907 02:03:40,440 --> 02:03:42,640 PROHIBITED THAT RETURN. 3908 02:03:42,640 --> 02:03:44,200 SO WONDERED FOR THOSE OTHER, 3909 02:03:44,200 --> 02:03:49,080 LIKE SOME OF THE HIPAA AND THE 3910 02:03:49,080 --> 02:03:52,480 CMS, ARE THOSE -- WOULD THOSE 3911 02:03:52,480 --> 02:03:54,040 STILL QUALIFY IF YOU HAD A CLIA 3912 02:03:54,040 --> 02:03:54,760 CERTIFIED LAB? 3913 02:03:54,760 --> 02:03:55,560 BECAUSE SOME OF THE RESULTS 3914 02:03:55,560 --> 02:03:56,720 OBVIOUSLY ARE NOT GOING TO GO 3915 02:03:56,720 --> 02:03:58,880 THROUGH A LABORATORY. 3916 02:03:58,880 --> 02:04:00,720 AND IT SOUNDED LIKE THERE WERE 3917 02:04:00,720 --> 02:04:01,840 LIMITATIONS BEYOND THE LAB 3918 02:04:01,840 --> 02:04:02,600 RESULTS. 3919 02:04:02,600 --> 02:04:06,760 OR DID I MISUNDERSTAND THAT? 3920 02:04:06,760 --> 02:04:08,200 >>SO HIPAA IS GOING TO APPLY TO 3921 02:04:08,200 --> 02:04:09,600 A COVERED ENTITY, AND THOSE ARE 3922 02:04:09,600 --> 02:04:10,920 THOSE ENTITIES THAT I LISTED UP 3923 02:04:10,920 --> 02:04:14,320 THERE THAT ARE DOING SOME SORT 3924 02:04:14,320 --> 02:04:15,640 OF ELECTRONIC TRANSACTION THAT'S 3925 02:04:15,640 --> 02:04:16,640 ACTUALLY GOT A STANDARD THAT'S 3926 02:04:16,640 --> 02:04:18,880 BEEN SET. 3927 02:04:18,880 --> 02:04:20,320 SO TO BOIL THAT DOWN, LIKE I 3928 02:04:20,320 --> 02:04:22,520 SAID, THE EHR IS GENERALLY GOING 3929 02:04:22,520 --> 02:04:24,440 TO FALL WITHIN THE SCOPE OF THE 3930 02:04:24,440 --> 02:04:25,880 DESIGNATED RECORD SET, SO YOU 3931 02:04:25,880 --> 02:04:27,160 CAN HAVE ACCESS TO THAT. 3932 02:04:27,160 --> 02:04:29,320 THAT'S WHERE HIPAA COMES IN. 3933 02:04:29,320 --> 02:04:30,720 HIPAA IS NOT ACTUALLY REGULATING 3934 02:04:30,720 --> 02:04:32,480 THE TESTING ITSELF, SO THE 3935 02:04:32,480 --> 02:04:33,760 DEVELOPMENT OF THE TEST AND THE 3936 02:04:33,760 --> 02:04:35,120 RESULTS INDIVIDUALLY. 3937 02:04:35,120 --> 02:04:36,200 IT'S TALKING ABOUT WHATEVER IS 3938 02:04:36,200 --> 02:04:38,560 COLLECTED AS PART OF THE 3939 02:04:38,560 --> 02:04:39,400 DESIGNATED RECORD SET, THAT'S 3940 02:04:39,400 --> 02:04:40,840 WHERE HIPAA IS GOING TO COME IN. 3941 02:04:40,840 --> 02:04:44,000 I KNOW IT'S COMPLICATED AND 3942 02:04:44,000 --> 02:04:45,520 THERE ARE NUANCES BETWEEN WHERE 3943 02:04:45,520 --> 02:04:46,400 ALL THESE INTERSECT AND WHERE 3944 02:04:46,400 --> 02:04:47,840 THEY DON'T, EVEN WHERE YOU DON'T 3945 02:04:47,840 --> 02:04:49,600 HAVE CLIA COMING IN, IT COULD BE 3946 02:04:49,600 --> 02:04:50,600 THAT THERE'S REQUIREMENTS UNDER 3947 02:04:50,600 --> 02:04:53,440 FDA FOR THE ACTUAL TEST ITSELF, 3948 02:04:53,440 --> 02:04:55,840 SO IT JUST DEPENDS ON WHAT 3949 02:04:55,840 --> 02:04:58,840 ASPECT YOU'RE COMING IN AT WILL 3950 02:04:58,840 --> 02:05:00,000 DETERMINE WHERE AND WHAT 3951 02:05:00,000 --> 02:05:03,320 REGULATIONS ARE GOING TO APPLY. 3952 02:05:03,320 --> 02:05:05,560 >>I WAS JUST GOING TO VERIFY, 3953 02:05:05,560 --> 02:05:07,440 SO IF RESEARCH TESTING GETS 3954 02:05:07,440 --> 02:05:10,560 DEPOSITED INTO THE ELECTRONIC 3955 02:05:10,560 --> 02:05:11,760 HEALTH RECORD, THE PARTICIPANTS 3956 02:05:11,760 --> 02:05:13,000 ARE GOING TO BE ABLE TO ACCESS 3957 02:05:13,000 --> 02:05:14,640 THAT AS A PART OF THE ELECTRONIC 3958 02:05:14,640 --> 02:05:15,400 HEALTH RECORD. 3959 02:05:15,400 --> 02:05:17,400 THAT'S WHAT BASIC -- THAT'S WHAT 3960 02:05:17,400 --> 02:05:21,040 HIPAA REQUIRES. 3961 02:05:21,040 --> 02:05:22,400 SO THAT IS ACCESSIBLE AND 3962 02:05:22,400 --> 02:05:23,920 THERE'S NO SORT OF DEBATE ABOUT 3963 02:05:23,920 --> 02:05:26,840 WHETHER WE'RE GOING TO NOT LET 3964 02:05:26,840 --> 02:05:27,600 YOU HAVE IT. 3965 02:05:27,600 --> 02:05:29,600 IT'S YOUR ELECTRONIC MEDICAL 3966 02:05:29,600 --> 02:05:30,560 RECORD, HIPAA SAYS YOU CAN 3967 02:05:30,560 --> 02:05:31,320 ACCESS IT. 3968 02:05:31,320 --> 02:05:33,120 ON THE OTHER HAND, YOUR QUESTION 3969 02:05:33,120 --> 02:05:36,560 ABOUT CAN I GET CONSENT FROM A 3970 02:05:36,560 --> 02:05:37,560 PERSON TO GIVE THEM BACK 3971 02:05:37,560 --> 02:05:40,000 INFORMATION AND HIPAA NOT APPLY, 3972 02:05:40,000 --> 02:05:40,800 ABSOLUTELY, THAT HAPPENS ALL THE 3973 02:05:40,800 --> 02:05:41,080 TIME. 3974 02:05:41,080 --> 02:05:42,240 SO IT'S IN THE CONSENT, WE'RE 3975 02:05:42,240 --> 02:05:45,360 GOING TO GIVE YOU THIS 3976 02:05:45,360 --> 02:05:46,480 INFORMATION, EVEN IF THERE WAS 3977 02:05:46,480 --> 02:05:47,720 SOME KIND OF HIPAA BOUNDARY 3978 02:05:47,720 --> 02:05:49,160 AROUND IT, YOU NOW HAVE AN 3979 02:05:49,160 --> 02:05:50,760 AUTHORIZATION IF THAT PERSON IS 3980 02:05:50,760 --> 02:05:52,400 THE LEGALLY -- IS A LEGAL 3981 02:05:52,400 --> 02:05:54,240 REPRESENTATIVE TO GET PERMISSION 3982 02:05:54,240 --> 02:05:55,160 FOR THAT INFORMATION TO BE 3983 02:05:55,160 --> 02:05:56,640 RELEASED, THEN THEY CAN RECEIVE 3984 02:05:56,640 --> 02:05:57,800 IT. 3985 02:05:57,800 --> 02:06:05,320 BUT YEAH. 3986 02:06:05,320 --> 02:06:06,080 >>JULIA? 3987 02:06:06,080 --> 02:06:07,840 >>I THOUGHT ONE OF THE 3988 02:06:07,840 --> 02:06:09,720 STRENGTHS OF THE 2018 REPORT WAS 3989 02:06:09,720 --> 02:06:11,120 THAT IT ACKNOWLEDGED THAT 3990 02:06:11,120 --> 02:06:13,320 THERE'S A WHOLE WORLD OF 3991 02:06:13,320 --> 02:06:17,600 ENVIRONMENTAL RESEARCH GOING ON 3992 02:06:17,600 --> 02:06:19,320 THAT'S NOT CLINICALLY RELEVANT 3993 02:06:19,320 --> 02:06:22,800 AND CALLED UPON IRBs AND 3994 02:06:22,800 --> 02:06:24,000 INSTITUTIONS AND RESEARCHERS TO 3995 02:06:24,000 --> 02:06:33,840 TAKE RESPONSIBILITY FOR QUALITY 3996 02:06:33,840 --> 02:06:34,240 ISSUES. 3997 02:06:34,240 --> 02:06:35,680 I DON'T KNOW WHERE ALL THE ECHO 3998 02:06:35,680 --> 02:06:36,720 TESTING TAKES PLACE, BUT 3999 02:06:36,720 --> 02:06:37,560 CERTAINLY THE ENVIRONMENTAL 4000 02:06:37,560 --> 02:06:39,400 HEALTH FIELD IS USING MANY 4001 02:06:39,400 --> 02:06:40,400 ACADEMIC LIBRARIES OUTSIDE OF 4002 02:06:40,400 --> 02:06:45,360 THE CLIA REGULATORY SCHEME AND 4003 02:06:45,360 --> 02:06:46,680 PEOPLE WANT THOSE RESULTS, THE 4004 02:06:46,680 --> 02:06:48,360 ACTIONS ARE NOT CLINICAL IN 4005 02:06:48,360 --> 02:06:50,160 RESPONSE TO THOSE RESULTS. 4006 02:06:50,160 --> 02:06:51,880 AND I THOUGHT IT WAS A STRENGTH 4007 02:06:51,880 --> 02:06:54,120 OF THE 28 REPORT THAT IT 4008 02:06:54,120 --> 02:06:58,040 ACKNOWLEDGED THAT THAT NEEDS TO 4009 02:06:58,040 --> 02:07:03,080 BE ADDRESSED. 4010 02:07:03,080 --> 02:07:03,720 >>THANK YOU. 4011 02:07:03,720 --> 02:07:04,840 I DON'T THINK I WOULD HAVE TOO 4012 02:07:04,840 --> 02:07:06,280 MUCH MORE TO SAY THERE, AND I 4013 02:07:06,280 --> 02:07:08,840 SUSPECT THIS IS GOING TO BE A 4014 02:07:08,840 --> 02:07:11,520 LONG-TERM EVOLUTIONARY PROCESS. 4015 02:07:11,520 --> 02:07:13,200 FROM THE STANDPOINT OF ECHO. 4016 02:07:13,200 --> 02:07:15,560 I GUESS THE QUESTION WOULD BE 4017 02:07:15,560 --> 02:07:18,240 HOW DO YOU AS A CONSORTIUM 4018 02:07:18,240 --> 02:07:20,520 DECIDE WHETHER A PARTICULAR 4019 02:07:20,520 --> 02:07:21,600 LABORATORY HAS SUFFICIENT 4020 02:07:21,600 --> 02:07:28,320 QUALITY STANDARDS TO LIVE UP TO 4021 02:07:28,320 --> 02:07:29,600 THE RETURN OF RESULTS. 4022 02:07:29,600 --> 02:07:31,480 AND LIKE THIS QUESTION OF RETURN 4023 02:07:31,480 --> 02:07:32,920 OF RESULTS, PROB BLIP MAY WELL 4024 02:07:32,920 --> 02:07:34,560 BE A PROCESS IN PLACE WHERE 4025 02:07:34,560 --> 02:07:36,640 FOLKS ARE LOOKING AT THAT 4026 02:07:36,640 --> 02:07:38,360 QUESTION AND MAKING SELECTIONS 4027 02:07:38,360 --> 02:07:43,120 OF LABS ON A BASIS OF THE 4028 02:07:43,120 --> 02:07:45,640 QUALITY ISSUE. 4029 02:07:45,640 --> 02:07:47,040 I DON'T THINK THAT NECESSARILY 4030 02:07:47,040 --> 02:07:52,320 GETS YOU AROUND CLIA FOR THE 4031 02:07:52,320 --> 02:07:54,400 HUMAN SPECIMENS, BUT AS ADAM 4032 02:07:54,400 --> 02:07:57,360 SAYS, IT'S NOT -- CLIA IS NOT 4033 02:07:57,360 --> 02:07:58,440 DIRECTLY RELEVANT TO 4034 02:07:58,440 --> 02:07:59,560 ENVIRONMENTAL SAMPLES BUT 4035 02:07:59,560 --> 02:08:01,080 OBVIOUSLY FROM AN ETHICAL 4036 02:08:01,080 --> 02:08:02,720 STANDPOINT, THE SAME PRINCIPLES 4037 02:08:02,720 --> 02:08:05,000 EXIST THAT YOU NEED TO LOOK TO 4038 02:08:05,000 --> 02:08:07,880 LAB QUALITY TO MAKE SURE YOU'VE 4039 02:08:07,880 --> 02:08:09,000 GOT VALID ANSWERS TO YOUR 4040 02:08:09,000 --> 02:08:16,760 QUESTIONS. 4041 02:08:16,760 --> 02:08:19,200 >>CLIA APPLIES TO HUMAN 4042 02:08:19,200 --> 02:08:24,040 SPECIMENS, FOR THE PURPOSE OF 4043 02:08:24,040 --> 02:08:26,720 DIAGNOSIS, PREVENTION -- OF AB 4044 02:08:26,720 --> 02:08:27,080 ABNORMALITIES. 4045 02:08:27,080 --> 02:08:28,960 IT SETS THE MINIMUM BAR FOR THAT 4046 02:08:28,960 --> 02:08:29,520 TESTING. 4047 02:08:29,520 --> 02:08:30,400 IT'S SOMETHING TO THINK ABOUT 4048 02:08:30,400 --> 02:08:31,560 FOR ECHO AND ENVIRONMENTAL 4049 02:08:31,560 --> 02:08:33,480 HEALTH, IS THERE AN EQUIVALENCE 4050 02:08:33,480 --> 02:08:34,680 FROM AN ENVIRONMENTAL HEALTH 4051 02:08:34,680 --> 02:08:38,080 STANDARDS ASPECT, IS THERE AN 4052 02:08:38,080 --> 02:08:40,160 EQUIVALENT BAR THAT HAS BEEN 4053 02:08:40,160 --> 02:08:41,160 ESTABLISHED, STANDARDS THAT THE 4054 02:08:41,160 --> 02:08:41,680 FIELD ADHERES TO. 4055 02:08:41,680 --> 02:08:48,360 I MEAN, IT MAY NOT COME UNDER 4056 02:08:48,360 --> 02:08:49,520 CLIA, BUT AS THE REPORT ACTUALLY 4057 02:08:49,520 --> 02:08:50,800 PUT OUT, THERE'S A CONCEPT OF 4058 02:08:50,800 --> 02:08:52,120 QUALITY OF TESTING THAT STILL 4059 02:08:52,120 --> 02:08:53,760 NEEDS TO BE ASSURED EVEN FROM A 4060 02:08:53,760 --> 02:08:55,640 RESEARCH LAB TO BE ABLE TO 4061 02:08:55,640 --> 02:08:56,480 RETURN, NOW HE, IS THERE 4062 02:08:56,480 --> 02:09:00,600 SOYOU KNOW, IS THERESOMETHING AN 4063 02:09:00,600 --> 02:09:02,120 THE ENVIRONMENTAL HEALTH SPACE 4064 02:09:02,120 --> 02:09:04,000 OR IS IT ADHERED TO BY TESTING 4065 02:09:04,000 --> 02:09:08,240 GROUPS. 4066 02:09:08,240 --> 02:09:11,400 >>MATT, DID YOU HAVE A COMMENT 4067 02:09:11,400 --> 02:09:12,080 RELATED TO THAT? 4068 02:09:12,080 --> 02:09:13,120 >>YES, THERE WAS SOMEBODY 4069 02:09:13,120 --> 02:09:13,640 BEFORE ME. 4070 02:09:13,640 --> 02:09:15,400 >>YOU WANT TO GO? 4071 02:09:15,400 --> 02:09:16,240 OKAY. 4072 02:09:16,240 --> 02:09:19,040 >>SO THANK YOU FOR THESE TALKS. 4073 02:09:19,040 --> 02:09:20,520 LET ME PULL TOGETHER A FEW 4074 02:09:20,520 --> 02:09:21,520 THREADS THAT I HEARD THAT FEEL 4075 02:09:21,520 --> 02:09:22,640 LIKE THEY'RE A LITTLE BIT 4076 02:09:22,640 --> 02:09:24,160 INTENTION AND I WANT TO HEAR HOW 4077 02:09:24,160 --> 02:09:25,640 YOU WORK THIS THROUGH. 4078 02:09:25,640 --> 02:09:27,680 SO ON THE ONE HAND, THERE'S THIS 4079 02:09:27,680 --> 02:09:33,280 GENERAL LITERATURE THAT RESEARCH 4080 02:09:33,280 --> 02:09:33,960 PARTICIPANTS WANT FINDINGS, 4081 02:09:33,960 --> 02:09:35,560 PEOPLE IN GENERAL WANT FINDINGS. 4082 02:09:35,560 --> 02:09:37,360 THERE'S THIS EMERGING IDEA THAT 4083 02:09:37,360 --> 02:09:39,960 PARTICIPANTS ARE PARTNERS 4084 02:09:39,960 --> 02:09:41,720 ACTUALLY THAT YOU SEE IN ECHO, 4085 02:09:41,720 --> 02:09:42,880 IN THE ALL-OF-US PROGRAM, AND 4086 02:09:42,880 --> 02:09:44,320 THERE'S THIS PROBLEM OF FIGURING 4087 02:09:44,320 --> 02:09:45,840 OUT WHAT VALUE IS AND HOW DO YOU 4088 02:09:45,840 --> 02:09:47,080 FIGURE THAT OUT, WELL, ONE OF 4089 02:09:47,080 --> 02:09:48,280 THE WAYS TO DO THAT IS TO ASK 4090 02:09:48,280 --> 02:09:48,640 PEOPLE. 4091 02:09:48,640 --> 02:09:50,840 SO THERE'S A LOT MORE 4092 02:09:50,840 --> 02:09:51,480 ENGAGEMENT, THERE'S A LOT MORE 4093 02:09:51,480 --> 02:09:53,160 SORT OF TALKING TO THE 4094 02:09:53,160 --> 02:09:53,920 PARTICIPANTS, THE PARTNERS, 4095 02:09:53,920 --> 02:09:57,000 ABOUT WHAT THEY WANT. 4096 02:09:57,000 --> 02:09:58,360 ON THE OTHER HAND, RESEARCH HAS 4097 02:09:58,360 --> 02:09:59,200 LIMITED RESOURCES. 4098 02:09:59,200 --> 02:10:01,840 YOU CAN'T HAVE AN OPEN-ENDED 4099 02:10:01,840 --> 02:10:04,400 OFFER OF RETURNING EVERYTHING. 4100 02:10:04,400 --> 02:10:09,960 THERE HAS TO BE SOME LIMITS TO 4101 02:10:09,960 --> 02:10:10,400 THAT. 4102 02:10:10,400 --> 02:10:11,640 FIGURING OUT WHAT IS FEASIBLE, 4103 02:10:11,640 --> 02:10:13,360 WHAT IS VALUABLE, IF YOU OFFER 4104 02:10:13,360 --> 02:10:15,120 TOO MUCH, THERE ARE GOING TO BE 4105 02:10:15,120 --> 02:10:15,880 OPPORTUNITY COSTS. 4106 02:10:15,880 --> 02:10:17,520 I THINK, JEFF, YOU GAVE THE 4107 02:10:17,520 --> 02:10:18,680 EXAMPLE OF THE MOTHER WHO WAS 4108 02:10:18,680 --> 02:10:20,240 LIKE WELL, I WANT EVERYTHING BUT 4109 02:10:20,240 --> 02:10:21,920 NOT IF IT TAKES AWAY FROM YOUR 4110 02:10:21,920 --> 02:10:23,040 ABILITY TO FIGURE OUT WHAT'S 4111 02:10:23,040 --> 02:10:25,080 GOING ON WITH MY KID'S DISEASE. 4112 02:10:25,080 --> 02:10:27,000 SO HOW DO YOU SORT OF MARRY 4113 02:10:27,000 --> 02:10:29,640 THOSE TWO IDEAS THAT SEEM LIKE 4114 02:10:29,640 --> 02:10:30,600 THEY'RE IN TENSION? 4115 02:10:30,600 --> 02:10:31,920 YOU CAN ASK PEOPLE, YOU CAN 4116 02:10:31,920 --> 02:10:32,680 ENGAGE WITH PARTICIPANTS, YOU 4117 02:10:32,680 --> 02:10:35,640 CAN SORT OF OFFER THEM AN 4118 02:10:35,640 --> 02:10:37,840 OPEN-ENDED MENU OF CHOICES, BUT 4119 02:10:37,840 --> 02:10:38,960 THEN YOU CAN'T ACTUALLY DELIVER 4120 02:10:38,960 --> 02:10:40,040 ON THAT PROMISE BECAUSE YOU HAVE 4121 02:10:40,040 --> 02:10:43,320 TO DRAW SOME LINES AS A RESEARCH 4122 02:10:43,320 --> 02:10:47,520 PROGRAM. 4123 02:10:47,520 --> 02:10:48,240 SO HOW DO YOU HAVE THAT 4124 02:10:48,240 --> 02:10:48,920 CONVERSATION WHERE YOU WANT TO 4125 02:10:48,920 --> 02:10:50,720 GET THEIR INPUT BUT YOU'RE AT 4126 02:10:50,720 --> 02:10:51,760 THE SAME TIME SAYING WE CAN'T 4127 02:10:51,760 --> 02:10:57,440 GIVE YOU EVERYTHING? 4128 02:10:57,440 --> 02:10:58,720 >>GREAT QUESTION. 4129 02:10:58,720 --> 02:11:00,440 AND I WOULD GO BACK TO A COMMENT 4130 02:11:00,440 --> 02:11:01,480 I MADE AND SOME OF THE WORK 4131 02:11:01,480 --> 02:11:02,600 WE'VE DONE IN PAST YEARS WITH 4132 02:11:02,600 --> 02:11:05,920 TRYING TO DEVELOP A PROCESS 4133 02:11:05,920 --> 02:11:08,480 CALLED DELIVERTIVE FOCUS GROUPS. 4134 02:11:08,480 --> 02:11:10,840 THE NOTION IS, YOU DON'T ASK 4135 02:11:10,840 --> 02:11:13,200 SIMPLISTIC QUESTIONS AND NOT TO 4136 02:11:13,200 --> 02:11:15,280 CAST ANY ASPERSIONS ON SOCIAL 4137 02:11:15,280 --> 02:11:16,480 SCIENCE COLLEAGUES BECAUSE THEY 4138 02:11:16,480 --> 02:11:18,560 KNOW THE SOPHISTICATIONS HERE 4139 02:11:18,560 --> 02:11:19,760 BUT MAYBE THAT'S A SEPARATE 4140 02:11:19,760 --> 02:11:20,960 POINT, WHEN YOU DO THIS STUFF, 4141 02:11:20,960 --> 02:11:22,000 YOU WANT PEOPLE WHO KNOW WHAT 4142 02:11:22,000 --> 02:11:24,560 THEY'RE DOING WITH RESPECT TO 4143 02:11:24,560 --> 02:11:25,400 SOCIAL SCIENCE RESEARCH. 4144 02:11:25,400 --> 02:11:29,240 BUT YOU CAN'T ASK SIM POLICE TI 4145 02:11:29,240 --> 02:11:30,280 QUESTIONS LIKE WHAT RESEARCH 4146 02:11:30,280 --> 02:11:31,360 RESULTS DO YOU WANT OR DO YOU 4147 02:11:31,360 --> 02:11:33,000 WANT EVERYTHING, BECAUSE THE 4148 02:11:33,000 --> 02:11:34,040 ANSWER MAY WELL BE SURE, OF 4149 02:11:34,040 --> 02:11:35,000 COURSE I WANT EVERYTHING. 4150 02:11:35,000 --> 02:11:36,320 BUT THEN WHEN YOU SIT DOWN AND 4151 02:11:36,320 --> 02:11:37,840 SAY OKAY, HERE'S WHAT EVERYTHING 4152 02:11:37,840 --> 02:11:39,160 MEANS, HERE ARE THE IMPLICATIONS 4153 02:11:39,160 --> 02:11:42,320 OF TRYING TO TAKE THAT STANDARD, 4154 02:11:42,320 --> 02:11:43,440 HERE ARE THINGS THAT REALLY 4155 02:11:43,440 --> 02:11:45,120 MIGHT BE CRITICALLY USEFUL FOR 4156 02:11:45,120 --> 02:11:46,280 YOU, HERE ARE THINGS THAT MIGHT 4157 02:11:46,280 --> 02:11:47,200 BE LESS USEFUL. 4158 02:11:47,200 --> 02:11:49,040 HOW DO WE DRAW LINES AROUND WHAT 4159 02:11:49,040 --> 02:11:50,360 REALLY OUR RESPONSIBILITIES ARE 4160 02:11:50,360 --> 02:11:51,160 AS A RESEARCH TEAM. 4161 02:11:51,160 --> 02:11:52,800 AND I THINK YOU GET REASONABLE 4162 02:11:52,800 --> 02:11:53,360 ANSWERS OUT OF PEOPLE. 4163 02:11:53,360 --> 02:11:54,320 SO AS LONG AS YOU HAVE THAT PART 4164 02:11:54,320 --> 02:11:57,840 OF THE ENGAGEMENT TO SAY IT'S 4165 02:11:57,840 --> 02:11:59,080 NOT JUST AN OPEN FIELD THAT 4166 02:11:59,080 --> 02:12:00,080 YOU'RE GOING TO GET EVERYTHING 4167 02:12:00,080 --> 02:12:01,480 BECAUSE THAT IS TOO MUCH OF A 4168 02:12:01,480 --> 02:12:02,800 BURDEN ON THE RESEARCH 4169 02:12:02,800 --> 02:12:03,760 ENTERPRISE AND YOU'RE NOT GOING 4170 02:12:03,760 --> 02:12:06,840 TO GET MUCH RESEARCH DONE. 4171 02:12:06,840 --> 02:12:08,280 LET'S REALLY FOCUS ON WHAT'S 4172 02:12:08,280 --> 02:12:09,240 MOST IMPORTANT TO MEEM AND 4173 02:12:09,240 --> 02:12:13,360 PEPEOPLE ANDPEOPLE WILL UNDERST, 4174 02:12:13,360 --> 02:12:13,880 AND ACCEPT THAT. 4175 02:12:13,880 --> 02:12:16,000 >>I THINK -- IF YOU THINK ABOUT 4176 02:12:16,000 --> 02:12:17,520 THE SPECTRUM OF POLICIES YOU 4177 02:12:17,520 --> 02:12:18,640 MIGHT TAKE, YOU KNOW, YOU COULD 4178 02:12:18,640 --> 02:12:21,160 SAY WELL, WE'RE NOT GOING TO 4179 02:12:21,160 --> 02:12:21,840 RETURN ANYTHING. 4180 02:12:21,840 --> 02:12:23,360 AT THE OTHER END, YOU COULD SAY 4181 02:12:23,360 --> 02:12:25,000 WE'RE GOING TO JUST PUT -- LIKE 4182 02:12:25,000 --> 02:12:26,920 BUILD A BIG DATABASE, AND YOU 4183 02:12:26,920 --> 02:12:31,920 CAN JUST GO OP LI ONLINE AND LOT 4184 02:12:31,920 --> 02:12:33,720 YOUR DATABASE. 4185 02:12:33,720 --> 02:12:35,600 FORGIVE ME I'M A PEDIATRICIAN, 4186 02:12:35,600 --> 02:12:38,840 FROM THE MOVIE INYESTERDAYIBLES, 4187 02:12:38,840 --> 02:12:41,200 IF EVERYBODY IS SUPER, NOBODY 4188 02:12:41,200 --> 02:12:42,080 IS. 4189 02:12:42,080 --> 02:12:44,480 SO IF I GIVE INFORMATION TO A 4190 02:12:44,480 --> 02:12:47,120 PARTICIPANT OR A PATIENT AND 4191 02:12:47,120 --> 02:12:51,400 IT'S ALL JUK, NONE OF JUNK, NONS 4192 02:12:51,400 --> 02:12:52,760 HELPFUL. 4193 02:12:52,760 --> 02:12:54,960 DIRECT-TO-CONSUMER, GENETIC 4194 02:12:54,960 --> 02:12:56,480 TESTING AND THINGS, THOSE FOLKS 4195 02:12:56,480 --> 02:12:57,720 GET THAT INFORMATION AND THEY 4196 02:12:57,720 --> 02:12:59,360 TRY TO FIND A PROFESSIONAL TO 4197 02:12:59,360 --> 02:13:00,760 HELP THEM INTERPRET IT BECAUSE 4198 02:13:00,760 --> 02:13:02,000 THEY DON'T KNOW WHAT TO MAKE OF 4199 02:13:02,000 --> 02:13:02,320 IT. 4200 02:13:02,320 --> 02:13:03,880 SO THEN YOU THINK ABOUT, WELL, 4201 02:13:03,880 --> 02:13:05,320 MAYBE EVERYTHING IS -- WE COULD 4202 02:13:05,320 --> 02:13:06,240 MAKE IT POSSIBLE TO GET AT 4203 02:13:06,240 --> 02:13:08,040 EVERYTHING BUT THAT'S REALLY NOT 4204 02:13:08,040 --> 02:13:09,680 HELPING ANYBODY DIRECTLY, SO YOU 4205 02:13:09,680 --> 02:13:12,760 THINK ABOUT SORT OF HOW DO WE 4206 02:13:12,760 --> 02:13:15,720 BUILD A STRATEGY THAT SORT OF 4207 02:13:15,720 --> 02:13:17,480 GIVES FOLKS THE IDEA THAT 4208 02:13:17,480 --> 02:13:19,040 THEY'RE GETTING THINGS THAT ARE 4209 02:13:19,040 --> 02:13:20,280 HELPFUL TO THEM, BUT WE'RE 4210 02:13:20,280 --> 02:13:21,720 GIVING IT TO THEM IN A WAY THAT 4211 02:13:21,720 --> 02:13:24,200 HELPS THEM FOCUS ON WHAT'S MOST 4212 02:13:24,200 --> 02:13:25,600 IMPORTANT AND WHAT ARE THE 4213 02:13:25,600 --> 02:13:27,480 ACTIONS THAT THEY COULD TAKE, 4214 02:13:27,480 --> 02:13:30,280 AND THEN YOU'RE REALLY I THINK 4215 02:13:30,280 --> 02:13:31,320 GETTING BACK TO WHAT YOU WERE 4216 02:13:31,320 --> 02:13:32,520 POINTING OUT THAT THAT TAKES 4217 02:13:32,520 --> 02:13:35,800 RESOURCES. 4218 02:13:35,800 --> 02:13:37,400 >>JUST TO SUMMARIZE, IT SOUNDS 4219 02:13:37,400 --> 02:13:38,400 LIKE YOU NEED CURE RANGE OF 4220 02:13:38,400 --> 02:13:39,680 MOTION FROM BOTH ENDS. 4221 02:13:39,680 --> 02:13:41,000 YOU NEED THE INPUT OF THE 4222 02:13:41,000 --> 02:13:42,360 PARTICIPANTS TO EXPRESS WHAT 4223 02:13:42,360 --> 02:13:44,000 THEY WANT, BUT YOU ALSO NEED THE 4224 02:13:44,000 --> 02:13:48,280 RESEARCH TEAM TO SORT OF BE 4225 02:13:48,280 --> 02:13:50,000 GUIDING PEOPLE TOWARDS WHAT 4226 02:13:50,000 --> 02:13:53,080 INFORMATION WILL BE MOST 4227 02:13:53,080 --> 02:13:53,560 VALUABLE TOWARDS THEM. 4228 02:13:53,560 --> 02:13:59,600 IT HAS TO BE SORT OF A TWO-WAY 4229 02:13:59,600 --> 02:14:02,120 STREET. 4230 02:14:02,120 --> 02:14:02,960 >>MATT? 4231 02:14:02,960 --> 02:14:04,560 >>THIS IS A GREAT DISCUSSION. 4232 02:14:04,560 --> 02:14:05,720 THANKS. 4233 02:14:05,720 --> 02:14:07,080 FOR THE AUDIENCE AND FOR OUR 4234 02:14:07,080 --> 02:14:09,880 PANEL MEMBERS. 4235 02:14:09,880 --> 02:14:12,520 SO I'D LIKE TO SORT OF BROADEN 4236 02:14:12,520 --> 02:14:16,040 WHAT WE MEAN BY ENVIRONMENT, SO 4237 02:14:16,040 --> 02:14:17,560 IN ECHO, WHEN WE SAY 4238 02:14:17,560 --> 02:14:20,000 ENVIRONMENTAL INFLUENCES, WE 4239 02:14:20,000 --> 02:14:21,080 MEAN EVERYTHING FROM SOCIETY TO 4240 02:14:21,080 --> 02:14:22,200 BIOLOGY. 4241 02:14:22,200 --> 02:14:23,680 AND A LOT OF THE DISCUSSION HERE 4242 02:14:23,680 --> 02:14:28,480 HAS BEEN ON SPECIMENS, SO BODILY 4243 02:14:28,480 --> 02:14:30,840 FLUIDS AND OTHER THINGS WE TAKE 4244 02:14:30,840 --> 02:14:32,080 OUT OF PEOPLE, OR MAYBE EVEN 4245 02:14:32,080 --> 02:14:34,480 THINGS THAT WE MONITOR IN OUR 4246 02:14:34,480 --> 02:14:36,920 MACRO ENVIRONMENTS, THINKING 4247 02:14:36,920 --> 02:14:38,120 ABOUT TOXIC CHEMICALS. 4248 02:14:38,120 --> 02:14:40,760 BUT IN ECHO, WE ALSO THINK ABOUT 4249 02:14:40,760 --> 02:14:43,440 SELF REPORTS. 4250 02:14:43,440 --> 02:14:45,000 PERSON REPORTED OUTCOMES. 4251 02:14:45,000 --> 02:14:47,120 WE THINK ABOUT PHYSICAL EXAM 4252 02:14:47,120 --> 02:14:47,760 MEASUREMENTS, WE THINK ABOUT ALL 4253 02:14:47,760 --> 02:14:48,760 OF THESE THINGS AS PART OF THE 4254 02:14:48,760 --> 02:14:51,960 ENVIRONMENT. 4255 02:14:51,960 --> 02:14:54,880 SO DO THE ETHICAL PRINCIPLES 4256 02:14:54,880 --> 02:14:56,280 DIFFER, AND DO THE REGULATIONS 4257 02:14:56,280 --> 02:14:59,760 OR LAWS DIFFER WHEN YOU'RE 4258 02:14:59,760 --> 02:15:01,080 TALKING ABOUT SELF REPORTS AND 4259 02:15:01,080 --> 02:15:02,600 PHYSICAL MEASUREMENTS AS OPPOSED 4260 02:15:02,600 --> 02:15:11,280 TO LABORATORY RESULTS? 4261 02:15:11,280 --> 02:15:12,960 >>SO I'LL COMMENT, YOU'RE GOING 4262 02:15:12,960 --> 02:15:14,120 TO HEAR THE SAME MANTRA I'VE 4263 02:15:14,120 --> 02:15:16,200 LISTED BEFORE, WHICH IS CLIA 4264 02:15:16,200 --> 02:15:18,560 APPLIES TO HUMAN SPECIMENS, AND 4265 02:15:18,560 --> 02:15:19,520 SO OTHER SAMPLES THAT YOU'RE 4266 02:15:19,520 --> 02:15:21,160 GOING TO GET FROM THE 4267 02:15:21,160 --> 02:15:21,880 ENVIRONMENT, WHETHER YOU'RE 4268 02:15:21,880 --> 02:15:24,600 TALKING ABOUT AIR, SOIL, WATER, 4269 02:15:24,600 --> 02:15:26,440 NOT GOING TO BE REGULATED BY 4270 02:15:26,440 --> 02:15:26,840 CLIA. 4271 02:15:26,840 --> 02:15:28,400 THE OTHER THING YOU'RE TALKING 4272 02:15:28,400 --> 02:15:30,000 MORE ON THE SOCIAL CONTEXT, AND 4273 02:15:30,000 --> 02:15:30,880 IT'S AN INTERESTING QUESTION IN 4274 02:15:30,880 --> 02:15:32,480 TERMS OF WHAT IS THE -- WHAT ARE 4275 02:15:32,480 --> 02:15:33,840 THE REGULATORY ASPECTS THAT 4276 02:15:33,840 --> 02:15:36,080 APPLY THERE, I'M NOT AWARE OF 4277 02:15:36,080 --> 02:15:37,880 CLIA OR ANY FDA REGULATIONS 4278 02:15:37,880 --> 02:15:39,960 APPLYING TO THOSE. 4279 02:15:39,960 --> 02:15:40,920 THAT DOESN'T MEAN THAT THERE 4280 02:15:40,920 --> 02:15:42,880 MIGHT NOT BE SOME OTHER 4281 02:15:42,880 --> 02:15:43,600 REGULATORY BODY THAT WOULD APPLY 4282 02:15:43,600 --> 02:15:45,680 TO THAT, BUT IN GENERAL, IF YOU 4283 02:15:45,680 --> 02:15:47,400 AS THE PARTICIPANT ARE SUPPLYING 4284 02:15:47,400 --> 02:15:49,400 THE INFORMATION, YOU ALREADY 4285 02:15:49,400 --> 02:15:50,240 HAVE THAT. 4286 02:15:50,240 --> 02:15:51,880 SO YOU SHOULD BE ABLE TO RETAIN 4287 02:15:51,880 --> 02:15:53,200 ACCESS TO THAT INFORMATION 4288 02:15:53,200 --> 02:15:54,080 REGARDLESS OF WHERE YOU'RE 4289 02:15:54,080 --> 02:15:55,080 STORING IT. 4290 02:15:55,080 --> 02:15:56,600 I THINK IF YOU'RE ALSO TALKING 4291 02:15:56,600 --> 02:15:59,480 ABOUT OTHER TYPES OF BUILT 4292 02:15:59,480 --> 02:16:01,360 ENVIRONMENT ASPECTS OR WHATNOT, 4293 02:16:01,360 --> 02:16:02,880 ALL THAT'S PUBLIC DATA ALREADY, 4294 02:16:02,880 --> 02:16:04,680 SO IF IT'S PUBLIC, IT'S PUBLIC, 4295 02:16:04,680 --> 02:16:05,240 RIGHT? 4296 02:16:05,240 --> 02:16:09,280 SO IF YOU'RE TALKING ABOUT HOW 4297 02:16:09,280 --> 02:16:12,240 MANY SUPERMARKETS ARE IN A 4298 02:16:12,240 --> 02:16:12,920 NEIGHBORHOOD, THAT'S PUBLIC 4299 02:16:12,920 --> 02:16:13,480 DATA. 4300 02:16:13,480 --> 02:16:15,880 SO THERE ISN'T A REGULATORY 4301 02:16:15,880 --> 02:16:18,040 ASPECT THAT WOULD KEEP PUBLIC 4302 02:16:18,040 --> 02:16:18,600 INFORMATION -- INFORMATION 4303 02:16:18,600 --> 02:16:20,480 THAT'S ALREADY PUBLIC FROM STILL 4304 02:16:20,480 --> 02:16:21,760 BEING PUBLIC IN THAT REGARD. 4305 02:16:21,760 --> 02:16:23,200 I DON'T KNOW IF THAT'S GETTING 4306 02:16:23,200 --> 02:16:25,360 TOWARDS WHERE YOU WERE MEANING 4307 02:16:25,360 --> 02:16:27,200 FROM AN -- BROADENING THE 4308 02:16:27,200 --> 02:16:27,920 ENVIRONMENTAL SPOT, BUT THOSE 4309 02:16:27,920 --> 02:16:29,440 ARE JUST SOME CONSIDERATIONS TO 4310 02:16:29,440 --> 02:16:30,560 THINK ABOUT. 4311 02:16:30,560 --> 02:16:32,400 >>I MEAN, WE ALSO MEAN 4312 02:16:32,400 --> 02:16:32,880 BEHAVIORS. 4313 02:16:32,880 --> 02:16:34,920 WHAT'S YOUR DIET? 4314 02:16:34,920 --> 02:16:38,000 OR A SCALE OF DEVELOPMENT OR A 4315 02:16:38,000 --> 02:16:39,440 SCALE OF MENTAL HEALTH OR 4316 02:16:39,440 --> 02:16:42,400 SOMETHING LIKE THAT. 4317 02:16:42,400 --> 02:16:42,600 SO -- 4318 02:16:42,600 --> 02:16:45,360 >>ALSO IF YOU'RE MEASURING LIKE 4319 02:16:45,360 --> 02:16:46,680 CHEMICALS AND DUST, YOU KNOW, 4320 02:16:46,680 --> 02:16:47,760 SOMETHING LIKE THAT, THAT SEEMS 4321 02:16:47,760 --> 02:16:51,120 TO BE KIND OF -- NOBODY KNOWS. 4322 02:16:51,120 --> 02:16:52,640 >>SO BROADENING THIS, KIM, TO 4323 02:16:52,640 --> 02:16:55,880 SAY IT'S NOT ONLY CHEMICALS BUT 4324 02:16:55,880 --> 02:16:58,480 IT'S ALSO SOCIAL, SOCIETAL, 4325 02:16:58,480 --> 02:17:01,880 MEDICAL, BEHAVIORAL, IN DISEASE 4326 02:17:01,880 --> 02:17:02,520 AS WELL. 4327 02:17:02,520 --> 02:17:03,840 >>THAT'S JUST A FASCINATING 4328 02:17:03,840 --> 02:17:04,120 QUESTION. 4329 02:17:04,120 --> 02:17:05,960 I'M GOING TO GUESS, BUT -- YOU 4330 02:17:05,960 --> 02:17:07,840 KNOW, I DON'T KNOW THIS FIELD 4331 02:17:07,840 --> 02:17:09,000 VERY WELL, BUT A LOT OF THOSE 4332 02:17:09,000 --> 02:17:10,160 ASSESSMENTS ARE SORT OF 4333 02:17:10,160 --> 02:17:12,800 ANALOGOUS TO YOUR CLIA CERTIFIED 4334 02:17:12,800 --> 02:17:13,200 LABORATORY TESTS. 4335 02:17:13,200 --> 02:17:15,000 SO IF YOU'VE GOT A HEIGHT, A 4336 02:17:15,000 --> 02:17:17,720 WEIGHT, A HEAD CIRCUMFERENCE AND 4337 02:17:17,720 --> 02:17:18,600 DEVELOPMENTAL EVALUATION ALL 4338 02:17:18,600 --> 02:17:20,280 BEING CONDUCTED WITH STAND DIED 4339 02:17:20,280 --> 02:17:21,760 TESTS, SEEMS TO ME THOSE ARE 4340 02:17:21,760 --> 02:17:22,960 STRAIGHTFORWARD TO RETURN TO 4341 02:17:22,960 --> 02:17:24,080 PEOPLE. 4342 02:17:24,080 --> 02:17:25,760 PROBABLY EVEN THE ONES THAT FALL 4343 02:17:25,760 --> 02:17:27,200 WELL WITHIN THE NORMAL RANGE, 4344 02:17:27,200 --> 02:17:28,800 BECAUSE YOU'RE WEIGHING THE -- 4345 02:17:28,800 --> 02:17:30,640 YOU'RE DOING THESE 4346 02:17:30,640 --> 02:17:32,040 STRAIGHTFORWARD THINGS THAT A 4347 02:17:32,040 --> 02:17:32,720 PEDIATRICIAN WOULD DO, PEOPLE 4348 02:17:32,720 --> 02:17:34,240 ARE GOING TO WANT TO KNOW THAT 4349 02:17:34,240 --> 02:17:36,360 INFORMATION AND IT'S PROBABLY 4350 02:17:36,360 --> 02:17:37,120 RELATIVELY EASY TO SAY. 4351 02:17:37,120 --> 02:17:39,440 NOW MAYBE THOSE THINGS THAT ARE 4352 02:17:39,440 --> 02:17:41,160 MORE HYPOTHESIS-DRIVEN AT THIS 4353 02:17:41,160 --> 02:17:43,640 POINT, AND YOU'VE GOT A 4354 02:17:43,640 --> 02:17:44,480 CONSTELLATION OF SOCIAL FACTORS 4355 02:17:44,480 --> 02:17:46,040 WHERE YOU'RE GOING TO PREDICT 4356 02:17:46,040 --> 02:17:49,560 BEHAVIORAL OUTCOMES IN 4357 02:17:49,560 --> 02:17:50,320 ADOLESCENTS, BUT YOU HAVEN'T 4358 02:17:50,320 --> 02:17:51,680 VALIDATED THAT YET, I'D BE 4359 02:17:51,680 --> 02:17:53,080 CAUTIOUS ABOUT TRYING TO SAY, 4360 02:17:53,080 --> 02:17:54,240 WELL, I DON'T KNOW, YOU'RE 4361 02:17:54,240 --> 02:17:55,760 FALLING ON THIS SIDE OF THE 4362 02:17:55,760 --> 02:17:56,800 SCALE, WE DON'T KNOW WHAT THAT 4363 02:17:56,800 --> 02:17:58,160 MEANS YET, BUT IT COULD BE A 4364 02:17:58,160 --> 02:17:58,640 PROBLEM. 4365 02:17:58,640 --> 02:18:02,680 THAT'S WHERE I THINK YOU'RE 4366 02:18:02,680 --> 02:18:03,800 GETTING INTO THINNER ICE IN 4367 02:18:03,800 --> 02:18:05,760 TERMS OF RETURNING THAT KIND OF 4368 02:18:05,760 --> 02:18:07,560 RESULT WHEN THE OUTCOMES HAVEN'T 4369 02:18:07,560 --> 02:18:09,080 BEEN VALIDATED AS OF YET AND 4370 02:18:09,080 --> 02:18:10,160 THAT'S THE POINT OF THE 4371 02:18:10,160 --> 02:18:12,760 RESEARCH, TO DO THE VALIDATIONS. 4372 02:18:12,760 --> 02:18:14,360 >>I COMPLETELY AGREE. 4373 02:18:14,360 --> 02:18:16,400 JUST TO ADD TWO OTHER EXAMPLES, 4374 02:18:16,400 --> 02:18:17,960 ONE, YOU COULD USE SORT OF A 4375 02:18:17,960 --> 02:18:19,880 CLINICAL QUALITY MEASURE FOR 4376 02:18:19,880 --> 02:18:22,640 SUICIDALITY, RIGHT? 4377 02:18:22,640 --> 02:18:25,360 THE DUTY TO RESCUE CLEARLY COMES 4378 02:18:25,360 --> 02:18:26,200 INTO PLAY THERE. 4379 02:18:26,200 --> 02:18:28,520 THROUGH MY RESEARCH TESTING, I'M 4380 02:18:28,520 --> 02:18:29,360 IDENTIFYING SOMEONE THAT'S IN 4381 02:18:29,360 --> 02:18:30,960 IMMINENT HARM, I NEED TO ACT. 4382 02:18:30,960 --> 02:18:31,960 SO THE THINK THE ETHICAL 4383 02:18:31,960 --> 02:18:33,160 PRINCIPLES THAT I WAS DISCUSSING 4384 02:18:33,160 --> 02:18:34,120 CERTAINLY APPLY. 4385 02:18:34,120 --> 02:18:35,680 YOU RAISE ANOTHER EXAMPLE WHICH 4386 02:18:35,680 --> 02:18:40,080 I THINK IS GREAT ABOUT DIET, 4387 02:18:40,080 --> 02:18:42,280 HEALTH BEHAVIORS, ET CETERA. 4388 02:18:42,280 --> 02:18:43,840 CERTAINLY THERE ARE OTHER WAYS 4389 02:18:43,840 --> 02:18:45,640 PEOPLE ARE AWARE OF THAT. 4390 02:18:45,640 --> 02:18:47,320 SO YOU KNOW, YOU'RE DOING IT IN 4391 02:18:47,320 --> 02:18:49,400 A MORE STRUCTURED WAY THAN 4392 02:18:49,400 --> 02:18:50,360 PROBABLY MOST PEOPLE TRACK THEIR 4393 02:18:50,360 --> 02:18:51,680 DIET OR WHATEVER. 4394 02:18:51,680 --> 02:18:55,840 BUT WE ALSO KNOW THAT EVEN 4395 02:18:55,840 --> 02:18:57,840 THOUGH THERE IS A GREAT DESIRE 4396 02:18:57,840 --> 02:19:02,560 TO MAKE THAT KIND OF -- TO HAVE 4397 02:19:02,560 --> 02:19:04,280 INTERVENTION TO HELP FOLKS 4398 02:19:04,280 --> 02:19:07,600 CHANGE BEHAVIORS, INTERVENE WITH 4399 02:19:07,600 --> 02:19:09,400 DIET, EXERCISE, ET CETERA, BUT 4400 02:19:09,400 --> 02:19:10,920 THAT IS EXTRAORDINARILY 4401 02:19:10,920 --> 02:19:14,400 CHALLENGING, AND THIS IS AN AREA 4402 02:19:14,400 --> 02:19:17,080 WHERE THERE HAVE BEEN 4403 02:19:17,080 --> 02:19:17,840 INTERVENTIONS TRIED THAT TURN 4404 02:19:17,840 --> 02:19:19,440 OUT TO BE MORE HARM THAN GOOD, 4405 02:19:19,440 --> 02:19:28,520 TO DO MORE HARM THAN GOOD. 4406 02:19:28,520 --> 02:19:29,840 I THINK THAT'S A PERFECT EXAMPLE 4407 02:19:29,840 --> 02:19:32,120 OF WHERE THINKING ABOUT BENEFIT 4408 02:19:32,120 --> 02:19:33,880 VERSUS HARM AND OPPORTUNITY COST 4409 02:19:33,880 --> 02:19:34,680 COMES INTO PLAY. 4410 02:19:34,680 --> 02:19:35,760 >>SO LET ME GET A LITTLE MORE 4411 02:19:35,760 --> 02:19:37,680 DOWN AND DIRTY. 4412 02:19:37,680 --> 02:19:40,640 YOU KNOW, I PARTICIPATE IN YOUR 4413 02:19:40,640 --> 02:19:40,840 STUDY. 4414 02:19:40,840 --> 02:19:43,200 YOU TOLD ME THAT YOUR STUDY IS 4415 02:19:43,200 --> 02:19:47,440 ABOUT MATERNAL DA DIET, OFFSPRIG 4416 02:19:47,440 --> 02:19:49,040 OBESITY AND NEURAL DEVELOPMENT. 4417 02:19:49,040 --> 02:19:50,240 I KNOW THERE'S SOME RESEARCH OUT 4418 02:19:50,240 --> 02:19:51,320 THERE ON THIS ISSUE. 4419 02:19:51,320 --> 02:19:53,080 TELL ME WHAT I ATE DURING 4420 02:19:53,080 --> 02:19:54,880 PREGNANCY. 4421 02:19:54,880 --> 02:19:57,400 TELL ME WHAT MY INTAKE OF 4422 02:19:57,400 --> 02:19:58,280 SATURATED FAT WAS. 4423 02:19:58,280 --> 02:20:00,080 TELL ME WHAT MY INTAKE OF IODINE 4424 02:20:00,080 --> 02:20:03,040 WAS. 4425 02:20:03,040 --> 02:20:04,520 WHAT DO YOU SAY AS THE 4426 02:20:04,520 --> 02:20:06,520 RESEARCHER? 4427 02:20:06,520 --> 02:20:08,760 GIVEN WHAT YOU SAID, KYLE, THAT 4428 02:20:08,760 --> 02:20:10,760 WE DON'T KNOW EVERYTHING, WE 4429 02:20:10,760 --> 02:20:12,680 KNOW A FEW THINGS, THESE ARE ON 4430 02:20:12,680 --> 02:20:15,200 SCALES WHERE THERE'S -- YOU 4431 02:20:15,200 --> 02:20:17,200 KNOW, THERE'S SOME VALIDITY BUT 4432 02:20:17,200 --> 02:20:20,040 THE MEASUREMENTS AREN'T TOTALLY 4433 02:20:20,040 --> 02:20:23,360 VALID BECAUSE WE'RE DOING IT 4434 02:20:23,360 --> 02:20:25,040 FROM A FREQUENCY QUESTIONNAIRE 4435 02:20:25,040 --> 02:20:26,040 INSTEAD OF MULTIPLE FOOD DIARIES 4436 02:20:26,040 --> 02:20:26,880 OR SOMETHING LIKE THAT. 4437 02:20:26,880 --> 02:20:28,760 SO WHERE ARE WE IN THESE GREY 4438 02:20:28,760 --> 02:20:32,600 AREAS? 4439 02:20:32,600 --> 02:20:34,400 >>SOMETHING QUICK, I THINK THE 4440 02:20:34,400 --> 02:20:35,480 OTHER PRINCIPLE THAT I THINK IS 4441 02:20:35,480 --> 02:20:37,200 COMING OUT TO SOME EXTENT IS 4442 02:20:37,200 --> 02:20:38,400 THAT INVESTIGATORS NEED TO BE 4443 02:20:38,400 --> 02:20:39,360 CAUTIOUS ABOUT RETURNING RESULTS 4444 02:20:39,360 --> 02:20:41,200 THAT WILL NEGATIVELY IMPACT THE 4445 02:20:41,200 --> 02:20:43,320 CONDUCT OF THE STUDY. 4446 02:20:43,320 --> 02:20:45,160 SO THAT IF YOU'RE GOING TO SAY, 4447 02:20:45,160 --> 02:20:47,520 LET SAY, A HIGH CARBOHYDRATE 4448 02:20:47,520 --> 02:20:50,280 DIET IN INFANCY WE THINK MIGHT 4449 02:20:50,280 --> 02:20:51,720 BE ASSOCIATED WITH SOME ADVERSE 4450 02:20:51,720 --> 02:20:53,000 OUTCOME LATER ON, BUT WE DON'T 4451 02:20:53,000 --> 02:20:54,560 KNOW THAT, THAT'S WHAT WE'RE 4452 02:20:54,560 --> 02:20:58,760 LOOKING AT, BUT YOU CONSISTENTLY 4453 02:20:58,760 --> 02:21:01,520 TELL PARENTS ABOUT THE RELATIVE 4454 02:21:01,520 --> 02:21:03,040 CARBOHYDRATE INTAKE THAT THEY'RE 4455 02:21:03,040 --> 02:21:04,120 FEEDING THEIR KIDS AND PARENTS 4456 02:21:04,120 --> 02:21:06,000 THEN CHANGE THEIR BEHAVIOR ON 4457 02:21:06,000 --> 02:21:10,800 THAT BASIS, NOW MAYBE YOU'VE 4458 02:21:10,800 --> 02:21:13,120 UNDERMINED THE STUDY TO DRAW 4459 02:21:13,120 --> 02:21:13,680 VALID INFECTIONS DISEASE 4460 02:21:13,680 --> 02:21:14,920 CONCLUSIONS ABOUT THAT BECAUSE 4461 02:21:14,920 --> 02:21:15,920 YOU'VE INTERVENED IN A WAY 4462 02:21:15,920 --> 02:21:17,360 THAT'S CHANGING THE BEHAVIOR 4463 02:21:17,360 --> 02:21:18,720 THAT YOU'RE ACTUALLY STUDYING. 4464 02:21:18,720 --> 02:21:19,680 SO THAT'S SORT OF ONE PIECE OF 4465 02:21:19,680 --> 02:21:20,160 IT. 4466 02:21:20,160 --> 02:21:23,600 BUT TO THE EXTENT THAT YOU KNOW 4467 02:21:23,600 --> 02:21:25,160 ALREADY BASED ON PRIOR RESEARCH 4468 02:21:25,160 --> 02:21:27,520 THAT CERTAIN DIETARY PATTERNS 4469 02:21:27,520 --> 02:21:31,400 HAVE ADVERSE OUTCOMES, THEN I 4470 02:21:31,400 --> 02:21:33,040 DON'T SEE A PROBLEM WITH TELLING 4471 02:21:33,040 --> 02:21:35,000 PEOPLE AT LEAST THOSE WHO ASKED 4472 02:21:35,000 --> 02:21:36,440 TO SAY WELL, HERE'S WHERE YOU 4473 02:21:36,440 --> 02:21:38,120 FALL ON THAT SPECTRUM AND HEERTS 4474 02:21:38,120 --> 02:21:40,280 WHAT WE KNOW AT THIS POINT ABOUT 4475 02:21:40,280 --> 02:21:42,280 THE IMPACTS OF YOUR CURRENT 4476 02:21:42,280 --> 02:21:45,000 BEHAVIOR. 4477 02:21:45,000 --> 02:21:46,720 MAYBE THAT JUST RAISES ONE MORE 4478 02:21:46,720 --> 02:21:50,240 PIECE HERE, WHICH IS THAT THE 4479 02:21:50,240 --> 02:21:51,080 NATIONAL ACADEMY REPORT ALSO 4480 02:21:51,080 --> 02:21:52,200 WANTED TO THINK ABOUT RESULTS 4481 02:21:52,200 --> 02:21:54,400 THAT YOU ROUTINELY OFFER AND 4482 02:21:54,400 --> 02:21:55,600 THEN THOSE RESULTS THAT MIGHT BE 4483 02:21:55,600 --> 02:21:57,160 AVAILABLE UPON REQUEST. 4484 02:21:57,160 --> 02:21:59,360 AND SO THAT MIGHT BE A DIFFERENT 4485 02:21:59,360 --> 02:22:08,080 STANDARD TO THINK ABOUT AS WELL. 4486 02:22:08,080 --> 02:22:09,760 >>DO WE HAVE ANY QUESTIONS 4487 02:22:09,760 --> 02:22:10,000 ONLINE? 4488 02:22:10,000 --> 02:22:11,520 >>YES, WE DO. 4489 02:22:11,520 --> 02:22:12,680 JUST ONE, I GUESS, IN THE 4490 02:22:12,680 --> 02:22:14,960 INTEREST OF TIME. 4491 02:22:14,960 --> 02:22:17,920 AFTER CONVEYING AN INDIVIDUAL 4492 02:22:17,920 --> 02:22:18,840 PARTICIPANT'S RESULTS OBTAINED 4493 02:22:18,840 --> 02:22:20,280 AS PART OF A RESEARCH STUDY AND 4494 02:22:20,280 --> 02:22:22,160 THEN A FEW YEARS LATER, OTHER 4495 02:22:22,160 --> 02:22:24,960 RESEARCH COMES TO LIGHT WITH AN 4496 02:22:24,960 --> 02:22:25,840 OPPOSITE CONCLUSION ABOUT THE 4497 02:22:25,840 --> 02:22:27,000 MEANING OF THOSE RESULTS, WHAT 4498 02:22:27,000 --> 02:22:30,200 ARE THE ETHICAL OBLIGATIONS FOR 4499 02:22:30,200 --> 02:22:33,000 THE RESEARCHERS TO RE-CONTACT 4500 02:22:33,000 --> 02:22:35,240 THE PARTICIPANTS AND CONVEY THIS 4501 02:22:35,240 --> 02:22:36,240 NEW INTERPRETATION OF THE 4502 02:22:36,240 --> 02:22:39,680 PREVIOUS MESSAGE? 4503 02:22:39,680 --> 02:22:41,240 >>THIS IS A GREAT QUESTION, AND 4504 02:22:41,240 --> 02:22:44,960 YET ANOTHER EXAMPLE WHERE WE DO 4505 02:22:44,960 --> 02:22:46,920 HAVE SOME ANALOGS IN GENETICS 4506 02:22:46,920 --> 02:22:48,760 THAT MAY HELP US. 4507 02:22:48,760 --> 02:22:50,520 SO THERE'S A GUIDANCE FROM THE 4508 02:22:50,520 --> 02:22:53,880 AMERICAN SOCIETY OF HUMAN 4509 02:22:53,880 --> 02:22:55,960 GENETICS ON THIS EXACT QUESTION 4510 02:22:55,960 --> 02:22:56,880 WHEN THAT INFORMATION IS 4511 02:22:56,880 --> 02:22:57,360 GENETIC. 4512 02:22:57,360 --> 02:22:59,600 WE DID TESTING, WE TOLD YOU SOME 4513 02:22:59,600 --> 02:23:01,560 INFORMATION, MAYBE WE DECIDE 4514 02:23:01,560 --> 02:23:02,880 LATER THAT MORE COULD BE SAID 4515 02:23:02,880 --> 02:23:05,160 ABOUT THAT INFORMATION, OR MAYBE 4516 02:23:05,160 --> 02:23:08,480 EVEN WHAT WE TOLD YOU WAS WRONG, 4517 02:23:08,480 --> 02:23:09,760 THERE'S A CHANGE IN THE 4518 02:23:09,760 --> 02:23:10,320 INFORMATION. 4519 02:23:10,320 --> 02:23:12,640 AND IN GENERAL, THE GUIDANCE 4520 02:23:12,640 --> 02:23:13,840 FROM THE AMERICAN SOCIETY OF 4521 02:23:13,840 --> 02:23:14,960 HUMAN GENETICS IS THAT DURING 4522 02:23:14,960 --> 02:23:17,840 THE COURSE OF A RESEARCH STUDY, 4523 02:23:17,840 --> 02:23:20,040 WHERE SORT OF THE RESOURCES ARE 4524 02:23:20,040 --> 02:23:24,000 IN PLACE TO DO THIS WORK, THAT 4525 02:23:24,000 --> 02:23:24,640 THOSE RESOURCES SHOULD INCLUDE 4526 02:23:24,640 --> 02:23:26,440 THE ABILITY TO DO THAT. 4527 02:23:26,440 --> 02:23:28,960 BUT THAT BECAUSE PAST THE END OF 4528 02:23:28,960 --> 02:23:30,560 A STUDY, THE FEASIBILITY OF 4529 02:23:30,560 --> 02:23:32,480 DOING THAT PLUMMETS, THEN 4530 02:23:32,480 --> 02:23:36,000 THERE'S SORT OF A DROPOFF THERE 4531 02:23:36,000 --> 02:23:38,960 IN THE DUTY TO BE ABLE TO DO 4532 02:23:38,960 --> 02:23:39,640 THAT. 4533 02:23:39,640 --> 02:23:41,520 IF IT POSSIBLE TO CREATE SORT OF 4534 02:23:41,520 --> 02:23:43,840 INFRASTRUCTURE THAT CONTINUES 4535 02:23:43,840 --> 02:23:46,040 THE ABILITY TO DO THAT INTO THE 4536 02:23:46,040 --> 02:23:47,320 LONG TERM, THEN THAT WOULD 4537 02:23:47,320 --> 02:23:49,080 REALLY BE WONDERFUL BUT OF 4538 02:23:49,080 --> 02:23:56,680 COURSE THAT'S UNUSUAL. 4539 02:23:56,680 --> 02:23:58,360 >>JUST ONE OTHER POINT? 4540 02:23:58,360 --> 02:24:00,400 THIS IS ACTUALLY NOT EVEN A 4541 02:24:00,400 --> 02:24:01,720 SPECIFIC ISSUE WITH RESEARCH. 4542 02:24:01,720 --> 02:24:05,240 THIS IS ALSO PRESENT IN MEDICAL 4543 02:24:05,240 --> 02:24:06,240 PRACTICE. 4544 02:24:06,240 --> 02:24:07,800 PEOPLE MOVE ALL THE TIME, THEY 4545 02:24:07,800 --> 02:24:10,000 CHANGE THEIR PRACTITIONERS, THEY 4546 02:24:10,000 --> 02:24:13,400 MOVE OUT OF STATE, THEY CHANGE 4547 02:24:13,400 --> 02:24:15,080 THEIR HEALTHCARE INSURANCE. 4548 02:24:15,080 --> 02:24:16,640 THIS REMAINS A GENERAL QUESTION 4549 02:24:16,640 --> 02:24:18,640 OF HOW DO YOU ACTUALLY RECONTACT 4550 02:24:18,640 --> 02:24:19,920 FOLKS WHEN YOU HAVE NEW 4551 02:24:19,920 --> 02:24:23,120 INFORMATION AND RELEVANT. 4552 02:24:23,120 --> 02:24:25,080 I THINK WHAT KYLE SAID IS RIGHT, 4553 02:24:25,080 --> 02:24:27,400 THE FEASIBILITY DROPS OVER TIME. 4554 02:24:27,400 --> 02:24:29,400 I JUST WANT TO RAISE THE IDEA 4555 02:24:29,400 --> 02:24:30,880 THAT THAT IS ACTUALLY BROADER 4556 02:24:30,880 --> 02:24:32,360 THAN JUST A RESEARCH AREA OR 4557 02:24:32,360 --> 02:24:37,200 ISSUE. 4558 02:24:37,200 --> 02:24:39,360 >>JUST ONE MORE Q & A? 4559 02:24:39,360 --> 02:24:43,520 >>YES. 4560 02:24:43,520 --> 02:24:45,800 THIS ONE IS, I THINK, MOST 4561 02:24:45,800 --> 02:24:46,240 DIRECT. 4562 02:24:46,240 --> 02:24:48,600 CAN YOU CLARIFY WHETHER HUMAN 4563 02:24:48,600 --> 02:24:49,880 BIOMONITORRING SAMPLES, EXAMPLE, 4564 02:24:49,880 --> 02:24:53,200 URINE, TESTED FOR EMERGING 4565 02:24:53,200 --> 02:24:54,160 CONTAMINANTS OF CONCERN ARE 4566 02:24:54,160 --> 02:24:55,720 COVERED UNDER CLIA? 4567 02:24:55,720 --> 02:24:56,880 SPECIFICALLY, IF THE EXPOSURE 4568 02:24:56,880 --> 02:24:59,040 HAS NO GUIDELINE LEVEL THAT 4569 02:24:59,040 --> 02:25:01,600 WOULD ENABLE TO BE USED FOR 4570 02:25:01,600 --> 02:25:02,560 DIAGNOSIS, PREVENTION OR 4571 02:25:02,560 --> 02:25:05,320 TREATMENT OF DISEASE, BUT SOME 4572 02:25:05,320 --> 02:25:08,120 INFORMATION IS KNOWN THAT THE 4573 02:25:08,120 --> 02:25:09,640 EXPOSURE GENERALLY COULD HAVE 4574 02:25:09,640 --> 02:25:13,160 POTENTIAL HARM TO HEALTH. 4575 02:25:13,160 --> 02:25:15,360 >>SO AGAIN, THERE ARE SOME 4576 02:25:15,360 --> 02:25:18,480 EXCEPTIONS IN CLIA FOR RETURN 4577 02:25:18,480 --> 02:25:20,000 AND HOW YOU CAN ACTUALLY CONDUCT 4578 02:25:20,000 --> 02:25:20,320 SURVEILLANCE. 4579 02:25:20,320 --> 02:25:21,960 BUT I THINK THE BROADER RUBRIC 4580 02:25:21,960 --> 02:25:24,520 THAT'S GOING TO COME INTO PLAY 4581 02:25:24,520 --> 02:25:28,240 IS IS IT INDIVIDUAL LEVEL DATA 4582 02:25:28,240 --> 02:25:29,560 RESULT BEING RETURNED TO THE 4583 02:25:29,560 --> 02:25:31,080 INDIVIDUAL THAT IT'S ACTUALLY 4584 02:25:31,080 --> 02:25:32,880 DERIVED FROM, AND WHETHER 4585 02:25:32,880 --> 02:25:34,840 IT'S -- IF YOU'RE TALKING ABOUT 4586 02:25:34,840 --> 02:25:36,520 JUST BIOMONITORRING SAMPLES, 4587 02:25:36,520 --> 02:25:38,840 WHETHER YOU'RE LOOKING AT 4588 02:25:38,840 --> 02:25:39,840 WASTEWATER, FOR INSTANCE, YOU 4589 02:25:39,840 --> 02:25:41,920 KNOW, TO BRING IT ABOARD INTO 4590 02:25:41,920 --> 02:25:42,760 ENVIRONMENTAL HEALTH, UNLESS 4591 02:25:42,760 --> 02:25:43,880 YOU'RE SOMEHOW ACTUALLY 4592 02:25:43,880 --> 02:25:45,960 RETURNING AN INDIVIDUAL'S 4593 02:25:45,960 --> 02:25:47,160 RESULTS TO THE INDIVIDUAL 4594 02:25:47,160 --> 02:25:48,440 DERIVED FROM, IT'S NOT GOING TO 4595 02:25:48,440 --> 02:25:49,600 BE UNDER CLIA. 4596 02:25:49,600 --> 02:25:52,680 SO I THINK THE QUESTION REALLY 4597 02:25:52,680 --> 02:25:54,040 DERIVES BACK ON TO THE 4598 02:25:54,040 --> 02:25:54,880 INFORMATION YOU'RE PROVIDING AND 4599 02:25:54,880 --> 02:25:55,640 TO WHOM. 4600 02:25:55,640 --> 02:25:57,560 >>IF I COULD JUST ADD OUT TO 4601 02:25:57,560 --> 02:25:58,640 THAT, ADAM, I THINK THIS 4602 02:25:58,640 --> 02:26:01,280 QUESTION IS ABOUT INDIVIDUAL 4603 02:26:01,280 --> 02:26:02,080 BIOSAMPLES. 4604 02:26:02,080 --> 02:26:03,240 SO IT'S ABOUT SOMEBODY WHO 4605 02:26:03,240 --> 02:26:05,920 PROVIDES A URINE SAMPLE, YOU GET 4606 02:26:05,920 --> 02:26:07,680 A RESULT, THERE'S SOME RESEARCH 4607 02:26:07,680 --> 02:26:10,800 THAT THAT RESULT IS RELATED TO 4608 02:26:10,800 --> 02:26:13,000 AN OUTCOME EPIDEMIOLOGICALLY, 4609 02:26:13,000 --> 02:26:15,320 BUT IT DOESN'T -- THERE'S NO 4610 02:26:15,320 --> 02:26:18,000 IMPLICATION FOR A DIAGNOSIS OR 4611 02:26:18,000 --> 02:26:20,720 TREATMENT OF A DISEASE. 4612 02:26:20,720 --> 02:26:22,480 SO WHERE DOES CLIA COME INTO 4613 02:26:22,480 --> 02:26:23,040 EFFECT THERE? 4614 02:26:23,040 --> 02:26:27,840 >>SO I'LL GO BACK, CLIA DOESN'T 4615 02:26:27,840 --> 02:26:29,000 ACTUALLY TAKE INTO ACCOUNT WHAT 4616 02:26:29,000 --> 02:26:30,840 THE APPLICABILITY IS. 4617 02:26:30,840 --> 02:26:33,120 IT ASKS WHAT THE PURPOSE OF THE 4618 02:26:33,120 --> 02:26:33,760 TESTING AND HOW THAT COULD BE 4619 02:26:33,760 --> 02:26:34,440 USED. 4620 02:26:34,440 --> 02:26:37,280 SO IF IT COULD BE USED FOR 4621 02:26:37,280 --> 02:26:38,600 EVENTUAL TREATMENT, AND THAT 4622 02:26:38,600 --> 02:26:39,640 COULD BE TODAY, IT COULD BE 20 4623 02:26:39,640 --> 02:26:41,960 YEARS FROM NOW, BECAUSE THIS IS 4624 02:26:41,960 --> 02:26:45,720 THE WAY THAT CLIA OR CMS HAS 4625 02:26:45,720 --> 02:26:48,520 TENDED TO INTERPRET THIS, IF IT 4626 02:26:48,520 --> 02:26:49,960 COULD BE USED AT ANY POINT IN 4627 02:26:49,960 --> 02:26:53,320 TIME TO MANAGE AN INDIVIDUAL'S 4628 02:26:53,320 --> 02:26:54,160 HEALTH AND THE CARE THEY 4629 02:26:54,160 --> 02:27:00,600 RECEIVE, IT FALLS UNDER CLIA. 4630 02:27:00,600 --> 02:27:04,800 >>CAN I JUST ASK ANOTHER -- AN 4631 02:27:04,800 --> 02:27:06,960 ADDITIONAL QUESTION ABOUT THAT. 4632 02:27:06,960 --> 02:27:09,040 SO I THINK IT APPLIES TO HIPAA 4633 02:27:09,040 --> 02:27:10,200 AS WELL AS CLIA. 4634 02:27:10,200 --> 02:27:12,600 SO WHAT IF THE PEOPLE THAT WE 4635 02:27:12,600 --> 02:27:14,120 ARE -- THAT WE HAVE AS 4636 02:27:14,120 --> 02:27:15,800 PARTICIPANTS IN OUR STUDIES ARE 4637 02:27:15,800 --> 02:27:16,680 NOT PATIENTS? 4638 02:27:16,680 --> 02:27:22,320 SO WE'RE DOING EPIDEMIOLOGY. 4639 02:27:22,320 --> 02:27:23,640 AND WITHIN ECHO, THERE MIGHT BE 4640 02:27:23,640 --> 02:27:25,520 SOME COVERED ENTITIES, THERE 4641 02:27:25,520 --> 02:27:29,000 MOIT MIGHT NOT BE, BUT LET'S SAY 4642 02:27:29,000 --> 02:27:31,800 THEY'RE NOT, THEY'RE NOT COVERED 4643 02:27:31,800 --> 02:27:32,760 ENTITIES AND THEY'RE NOT 4644 02:27:32,760 --> 02:27:33,960 PATIENTS, THEY'RE JUST COMMUNITY 4645 02:27:33,960 --> 02:27:34,400 MEMBERS. 4646 02:27:34,400 --> 02:27:40,920 HOW DO REGULATIONS APPLY THERE? 4647 02:27:40,920 --> 02:27:43,000 >>SO CLIA AGAIN APPLIES JUST 4648 02:27:43,000 --> 02:27:44,760 WHEN YOU'RE TALKING ABOUT RETURN 4649 02:27:44,760 --> 02:27:46,800 OF INDIVIDUAL RESULTS TO AN 4650 02:27:46,800 --> 02:27:47,520 INDIVIDUAL. 4651 02:27:47,520 --> 02:27:48,680 IF YOU'RE TALKING ABOUT 4652 02:27:48,680 --> 02:27:50,720 COLLECTING COMMUNITY LEVEL DATA 4653 02:27:50,720 --> 02:27:52,040 THAT ISN'T GENERALLY GOING TO 4654 02:27:52,040 --> 02:27:53,880 FALL WITHIN THE SCOPE OF WHAT 4655 02:27:53,880 --> 02:27:55,160 THEY'RE LOOKING AT. 4656 02:27:55,160 --> 02:27:56,360 SO IT'S ALWAYS GOING TO COME 4657 02:27:56,360 --> 02:27:58,360 BACK TO IF YOU'RE TESTING AN 4658 02:27:58,360 --> 02:27:59,960 INDIVIDUAL AND THE PURPOSE FOR 4659 02:27:59,960 --> 02:28:00,760 WHICH YOU'RE ACTUALLY TESTING 4660 02:28:00,760 --> 02:28:01,840 AND HOW THAT INFORMATION COULD 4661 02:28:01,840 --> 02:28:03,800 BE USED NOW OR SOMETIME IN THE 4662 02:28:03,800 --> 02:28:05,200 FUTURE. 4663 02:28:05,200 --> 02:28:06,800 IS SORT OF THE RUBRIC I TEND TO 4664 02:28:06,800 --> 02:28:07,880 APPLY IN MOST OF THESE 4665 02:28:07,880 --> 02:28:09,280 SITUATIONS. 4666 02:28:09,280 --> 02:28:10,520 BUT COMMUNITY LEVEL DATA, YOU 4667 02:28:10,520 --> 02:28:13,880 KNOW, IF YOU'RE LOOKING AT 4668 02:28:13,880 --> 02:28:15,040 WHAT'S THE AIR QUALITY IN THIS 4669 02:28:15,040 --> 02:28:19,840 ZIP CODE, WHICH IS 20817 -- I 4670 02:28:19,840 --> 02:28:22,120 MEAN, BUT AGAIN, IT'S ALL BASED 4671 02:28:22,120 --> 02:28:26,600 ON INDIVIDUAL LEVEL INFORMATION, 4672 02:28:26,600 --> 02:28:29,000 BUT IT ALSO WOULD DEPEND ON WHAT 4673 02:28:29,000 --> 02:28:29,960 IS THE DATA YOU'RE TALKING 4674 02:28:29,960 --> 02:28:32,160 ABOUT, DID IT DERIVE FROM HUMAN 4675 02:28:32,160 --> 02:28:33,360 SPECIMEN, THEN IT'S GOING TO 4676 02:28:33,360 --> 02:28:35,480 ACTUALLY -- YOU KNOW, CLIA COULD 4677 02:28:35,480 --> 02:28:37,000 POTENTIALLY APPLY IN THAT CASE. 4678 02:28:37,000 --> 02:28:39,640 HIPAA FROM A STANDARD OF 4679 02:28:39,640 --> 02:28:41,360 COMMUNITY LEVEL, HIPAA APPLIES 4680 02:28:41,360 --> 02:28:42,680 TO COVERED ENTITIES, IT'S GOING 4681 02:28:42,680 --> 02:28:44,280 TO ALLOW ACCESS TO YOUR 4682 02:28:44,280 --> 02:28:44,960 DESIGNATED RECORD SET. 4683 02:28:44,960 --> 02:28:45,880 IF THE INFORMATION YOU'RE 4684 02:28:45,880 --> 02:28:48,840 TALKING ABOUT HAS BEEN ENTERED 4685 02:28:48,840 --> 02:28:49,880 INTO THE ELECTRONIC HEALTH 4686 02:28:49,880 --> 02:28:50,280 RECORD. 4687 02:28:50,280 --> 02:28:52,040 THERE ARE SOME EXCEPTIONS FOR 4688 02:28:52,040 --> 02:28:54,120 EVEN EHRs BEING APPLICABLE 4689 02:28:54,120 --> 02:28:55,920 HERE, BUT IF IT'S ALREADY IN THE 4690 02:28:55,920 --> 02:28:57,440 ELECTRONIC HEALTH RECORD, YOUR 4691 02:28:57,440 --> 02:28:59,120 CLINICIAN ENTERED IT OR THE 4692 02:28:59,120 --> 02:29:01,040 RESEARCHER ENTERED IT AND WASN'T 4693 02:29:01,040 --> 02:29:03,520 A RESEARCH PARTITION OF YOUR EHR 4694 02:29:03,520 --> 02:29:05,640 SYSTEM, THAT'S GOING TO BE 4695 02:29:05,640 --> 02:29:10,960 ACCESSIBLE UNDER HIPAA. 4696 02:29:10,960 --> 02:29:11,920 >>JOHNNYE. 4697 02:29:11,920 --> 02:29:13,760 >>SO I GUESS I'M HAVING A 4698 02:29:13,760 --> 02:29:17,880 REALLY HARD TIME WITH THE 4699 02:29:17,880 --> 02:29:20,160 CONCEPT OF A SPOT URINE 4700 02:29:20,160 --> 02:29:25,280 BIOMONITORRING RESULT OF AN 4701 02:29:25,280 --> 02:29:26,480 EMERGING CHEMICAL AT SOME POINT 4702 02:29:26,480 --> 02:29:27,440 IN THE FUTURE POSSIBLY BEING 4703 02:29:27,440 --> 02:29:28,760 USED FOR DIAGNOSTICS OR 4704 02:29:28,760 --> 02:29:30,000 TREATMENT. 4705 02:29:30,000 --> 02:29:31,880 WHEN WE HAVE EMERGING CHEMICALS 4706 02:29:31,880 --> 02:29:33,320 THAT WE'RE TELLING PEOPLE IN THE 4707 02:29:33,320 --> 02:29:35,600 NEWS ALL THE TIME ARE NOT GOING 4708 02:29:35,600 --> 02:29:37,880 TO BE GOOD FOR THEIR HEALTH. 4709 02:29:37,880 --> 02:29:40,600 THEY'RE NOT NATURALLY OCCURRING, 4710 02:29:40,600 --> 02:29:41,560 THERE'S SOMETHING THAT'S 4711 02:29:41,560 --> 02:29:44,360 INTRODUCED FROM OUTSIDE, AND 4712 02:29:44,360 --> 02:29:45,760 THOSE SPOT URINE, IF ANYTHING, 4713 02:29:45,760 --> 02:29:48,760 WOULD JUST BE SAYING, IF WE LOOK 4714 02:29:48,760 --> 02:29:56,240 AT 100 PEOPLE, HERE'S WHERE YOU 4715 02:29:56,240 --> 02:29:57,480 FALL ON THAT THING THAT WE DON'T 4716 02:29:57,480 --> 02:29:58,480 KNOW WHAT IT DOES YET. 4717 02:29:58,480 --> 02:30:00,880 IT SEEMS TO ME WHAT YOU'RE DOING 4718 02:30:00,880 --> 02:30:03,680 DEFINITELY FALLS UNDER 4719 02:30:03,680 --> 02:30:04,240 BENEFICENCE AT THAT POINT 4720 02:30:04,240 --> 02:30:05,120 BECAUSE YOU'RE SHOWING PEOPLE 4721 02:30:05,120 --> 02:30:06,120 HOW THEY MIGHT GET AHEAD OF 4722 02:30:06,120 --> 02:30:06,520 THIS. 4723 02:30:06,520 --> 02:30:07,880 YOU'RE TRYING TO SHOW THEM THAT 4724 02:30:07,880 --> 02:30:09,320 WE DON'T KNOW WHAT IT MEANS BUT 4725 02:30:09,320 --> 02:30:11,600 IT IS A POSSIBLE RISK. 4726 02:30:11,600 --> 02:30:13,240 AND IT'S UP TO THEM TO MAKE A 4727 02:30:13,240 --> 02:30:14,600 DECISION ON IF THEY WANT TO KEEP 4728 02:30:14,600 --> 02:30:15,800 GOING DOWN THAT PATH OR CHANGE 4729 02:30:15,800 --> 02:30:16,800 THAT. 4730 02:30:16,800 --> 02:30:18,600 AND YOU WOULD HAVE TO LOOK AT 4731 02:30:18,600 --> 02:30:21,600 ANY OF THE BIOMONITORRING 4732 02:30:21,600 --> 02:30:22,960 RESULTS IN A SIMILAR PERSPECTIVE 4733 02:30:22,960 --> 02:30:24,640 BECAUSE AS WE START COMING UP 4734 02:30:24,640 --> 02:30:27,040 WITH WAYS TO LOOK AT HOW 4735 02:30:27,040 --> 02:30:28,200 INTERACTIONS OCCUR, BECAUSE WE 4736 02:30:28,200 --> 02:30:29,960 HAVE ENOUGH SAMPLES IN SOMETHING 4737 02:30:29,960 --> 02:30:33,640 LIKE ECHO TO START DOING THAT, 4738 02:30:33,640 --> 02:30:34,840 WE FIND OUT THAT WHAT WE THOUGHT 4739 02:30:34,840 --> 02:30:36,600 WAS TOXIC BEFORE MAYBE ISN'T 4740 02:30:36,600 --> 02:30:38,000 TOXIC IF YOU HAVE THESE OTHER 4741 02:30:38,000 --> 02:30:39,520 THREE METALS WITH IT. 4742 02:30:39,520 --> 02:30:41,840 SO IT'S AN EVOLVING SCIENCE, AND 4743 02:30:41,840 --> 02:30:43,360 IT KIND OF GETS BACK TO WHAT WE 4744 02:30:43,360 --> 02:30:45,400 WERE TALKING ABOUT BEFORE, THAT 4745 02:30:45,400 --> 02:30:46,840 IF AS SCIENTISTS WE WOULDN'T 4746 02:30:46,840 --> 02:30:49,680 HAVE PUT OURSELVES IN THIS TIGHT 4747 02:30:49,680 --> 02:30:51,400 LITTLE BOX THAT ASSUMES THAT 4748 02:30:51,400 --> 02:30:53,360 NOBODY CAN UNDERSTAND 4749 02:30:53,360 --> 02:30:57,640 UNCERTAINTY, WE WOULD BE IN A 4750 02:30:57,640 --> 02:30:58,720 MUCH BETTER PLACE. 4751 02:30:58,720 --> 02:31:00,040 SO IS THERE SOMEPLACE THAT YOU 4752 02:31:00,040 --> 02:31:01,760 CAN GET A DEFINITION OF WHAT 4753 02:31:01,760 --> 02:31:04,840 THIS POSSIBLE USE IN THE FUTURE 4754 02:31:04,840 --> 02:31:05,880 FOR DIAGNOSTICS WOULD BE? 4755 02:31:05,880 --> 02:31:08,920 BECAUSE IT REALLY LIMITS 4756 02:31:08,920 --> 02:31:09,920 PEOPLE'S RIGHTS, I THINK, TO 4757 02:31:09,920 --> 02:31:12,680 INFORMATION. 4758 02:31:12,680 --> 02:31:15,160 >>SO I'LL SAY, I THINK THIS IS 4759 02:31:15,160 --> 02:31:16,240 A PERFECT QUESTION TO ACTUALLY 4760 02:31:16,240 --> 02:31:17,640 POSE TO CMS AND I'M GOING TO 4761 02:31:17,640 --> 02:31:19,200 LOOK AT MATT AND THE ECHO 4762 02:31:19,200 --> 02:31:20,240 PROGRAM, THESE ARE QUESTIONS 4763 02:31:20,240 --> 02:31:22,120 THAT CAN BE RAISED TO CMS TO 4764 02:31:22,120 --> 02:31:26,960 ACTUALLY CLARIFY, YOU KNOW, THE 4765 02:31:26,960 --> 02:31:28,840 NOW OR SOMETIME IN THE FUTURE 4766 02:31:28,840 --> 02:31:30,280 HAS JUST BEEN THEIR 4767 02:31:30,280 --> 02:31:30,880 LONG-STANDING INTERPRETATION, 4768 02:31:30,880 --> 02:31:32,360 YOU KNOW, IT'S POSSIBLE THAT IF 4769 02:31:32,360 --> 02:31:38,360 YOU PRESENT THEM WITH THE 4770 02:31:38,360 --> 02:31:39,680 BIOMONITORRING EXAMPLE THAT YOU 4771 02:31:39,680 --> 02:31:42,000 JUST POSED, THEY MAY LOOK AT 4772 02:31:42,000 --> 02:31:43,520 THAT DIFFERENTLY BUT THAT'S FOR 4773 02:31:43,520 --> 02:31:46,120 CMS TO MAKE A JUDGMENT CALL ON. 4774 02:31:46,120 --> 02:31:47,320 I CAN JUST TELL YOU WHAT I'M 4775 02:31:47,320 --> 02:31:49,640 WEAR OF AS THEIR LONG-STANDING 4776 02:31:49,640 --> 02:31:50,280 INTERPRETATION, IT'S FLOT THAT 4777 02:31:50,280 --> 02:31:51,320 IT HAS TO BE USABLE TODAY, IT'S 4778 02:31:51,320 --> 02:31:52,800 THAT IT COULD BE POTENTIALLY 4779 02:31:52,800 --> 02:31:54,560 INFORMATIVE AT ANY POINT IN TIME 4780 02:31:54,560 --> 02:31:55,000 IN THE FUTURE. 4781 02:31:55,000 --> 02:31:57,440 HOW THAT APPLIES SPECIFICALLY TO 4782 02:31:57,440 --> 02:31:58,520 THIS -- TO THE CASE YOU'RE 4783 02:31:58,520 --> 02:32:00,520 LAYING OUT, I THINK YOU WOULD 4784 02:32:00,520 --> 02:32:02,200 HAVE TO GO TO CMS TO GET THAT 4785 02:32:02,200 --> 02:32:03,800 CLARITY. 4786 02:32:03,800 --> 02:32:07,560 >>AND I'D JUST PROPOSE A 4787 02:32:07,560 --> 02:32:09,840 SOLUTION THAT DOESN'T EVEN 4788 02:32:09,840 --> 02:32:10,920 REQUIRE CLARIFYING ALL OF THIS, 4789 02:32:10,920 --> 02:32:14,880 WHICH WOULD BE EITHER DEVELOP A 4790 02:32:14,880 --> 02:32:17,040 RESOURCE CENTRALLY CAPABLE OF 4791 02:32:17,040 --> 02:32:18,240 REPRODUCING SOME THINGS WITHIN A 4792 02:32:18,240 --> 02:32:23,280 CLIA ENVIRONMENT, SO SORT OF 4793 02:32:23,280 --> 02:32:25,360 DEVELOP A CLIA INFORMATION 4794 02:32:25,360 --> 02:32:29,360 PROCESS, AND THAT SEEMED 4795 02:32:29,360 --> 02:32:30,240 IMPOSSIBLE 10 YEARS AGO IN 4796 02:32:30,240 --> 02:32:32,800 GENETICS AND GENOMICS AND FOLKS 4797 02:32:32,800 --> 02:32:34,400 WERE SORT OF LIKE WELL IF WE 4798 02:32:34,400 --> 02:32:35,320 HAVE TO DO THAT, IT'S NEVER 4799 02:32:35,320 --> 02:32:37,640 GOING TO HAPPEN, BUT THEN WITHIN 4800 02:32:37,640 --> 02:32:38,720 SEVERAL YEARS IT ACTUALLY WAS 4801 02:32:38,720 --> 02:32:40,040 HAPPENING AND THAT CREATED WHOLE 4802 02:32:40,040 --> 02:32:41,120 NEW OPPORTUNITIES TO DO THINGS, 4803 02:32:41,120 --> 02:32:44,000 TO DO INTERVENTIONAL RESEARCH, 4804 02:32:44,000 --> 02:32:45,880 WHAT WE CALL NOW GENOMIC 4805 02:32:45,880 --> 02:32:47,080 MEDICINE BUT WE CAN HAVE 4806 02:32:47,080 --> 02:32:47,880 ENVIRONMENTAL PUBLIC HEALTH, 4807 02:32:47,880 --> 02:32:49,280 RIGHT, WHERE WE'RE ACTUALLY NOW 4808 02:32:49,280 --> 02:32:52,640 USING THE RESOURCES WE CREATED 4809 02:32:52,640 --> 02:32:55,360 TO GENERATE THIS INFORMATION FOR 4810 02:32:55,360 --> 02:32:57,080 POPULATION HEALTH THAT CREATES 4811 02:32:57,080 --> 02:32:57,480 AN OPPORTUNITY. 4812 02:32:57,480 --> 02:32:58,720 SO YOU CAN EITHER DO THAT 4813 02:32:58,720 --> 02:33:02,040 CENTRALLY AND SORT OF HAVE A 4814 02:33:02,040 --> 02:33:03,200 CONFIRMATION METHOD OR THOSE 4815 02:33:03,200 --> 02:33:04,320 INDIVIDUAL LABS CAN ACTUALLY GO 4816 02:33:04,320 --> 02:33:07,880 THROUGH THE PROCESS OF BUILDING 4817 02:33:07,880 --> 02:33:09,000 THE CASE THAT WE HAVE MET THE 4818 02:33:09,000 --> 02:33:13,440 REQUIREMENTS OF CLIA AND IT'S 4819 02:33:13,440 --> 02:33:14,600 NOT -- IT'S COMPLEX BUT IT'S 4820 02:33:14,600 --> 02:33:16,280 NOT, YOU KNOW, MAGIC, THERE'S 4821 02:33:16,280 --> 02:33:19,680 SORT OF LIKE HANDLING OF SAMPLES 4822 02:33:19,680 --> 02:33:21,080 TO MAKE SURE WE KNOW THIS SAMPLE 4823 02:33:21,080 --> 02:33:21,720 CAME FROM THIS PERSON. 4824 02:33:21,720 --> 02:33:26,000 SO IT IS DOABLE, I'M NOT AN 4825 02:33:26,000 --> 02:33:26,960 EXPERT IN THIS AREA BUT THERE 4826 02:33:26,960 --> 02:33:28,440 ARE CERTAINLY GROUPS THAT TOOK 4827 02:33:28,440 --> 02:33:32,200 THE PLUNGE AND SAID LET'S DO IT. 4828 02:33:32,200 --> 02:33:33,560 AND THAT'S OPENED UP REALLY 4829 02:33:33,560 --> 02:33:36,520 GREAT OPPORTUNITIES AFTERWARDS. 4830 02:33:36,520 --> 02:33:38,400 >>I THINK YOUR QUESTION RAISES 4831 02:33:38,400 --> 02:33:39,800 THE HARDEST SET OF QUESTIONS FOR 4832 02:33:39,800 --> 02:33:42,440 THIS WHOLE STUDY AND CONFERENCE 4833 02:33:42,440 --> 02:33:45,720 AND WHEN YOU'RE LOOKING AT 4834 02:33:45,720 --> 02:33:47,040 CHEMICAL EXPOSURES, LET'S SAY, 4835 02:33:47,040 --> 02:33:50,440 AND YOU HAVE NO IDEA WHAT THAT 4836 02:33:50,440 --> 02:33:51,080 MEANS. 4837 02:33:51,080 --> 02:33:53,000 YOU THINK THEORETICALLY THERE 4838 02:33:53,000 --> 02:33:54,200 MAY BE A PROBLEM THERE, I THINK 4839 02:33:54,200 --> 02:33:56,320 IT'S VERY PROBLEMATIC 4840 02:33:56,320 --> 02:33:57,320 COMMUNICATION WITH A MOTHER TO 4841 02:33:57,320 --> 02:33:58,600 SAY YOUR FETUS HAS BEEN EXPOSED 4842 02:33:58,600 --> 02:34:00,120 TO THIS THING AND WE DON'T HAVE 4843 02:34:00,120 --> 02:34:01,440 ANY IDEA WHAT THAT MEANS. 4844 02:34:01,440 --> 02:34:03,400 MAYBE WE'LL FIND OUT IN FIVE OR 4845 02:34:03,400 --> 02:34:03,680 10 YEARS. 4846 02:34:03,680 --> 02:34:07,000 THAT'S A PRETTY PROBLEMATIC 4847 02:34:07,000 --> 02:34:07,520 MESSAGE. 4848 02:34:07,520 --> 02:34:08,920 I WOULDN'T SPEAK PERSONALLY IN 4849 02:34:08,920 --> 02:34:10,480 TERMS OF PEOPLE'S RIGHTS TO 4850 02:34:10,480 --> 02:34:14,600 INFORMATION, I THINK IT'S THEM 4851 02:34:14,600 --> 02:34:15,440 GETTING -- RISE TO THAT LEVEL 4852 02:34:15,440 --> 02:34:16,880 FOR RESEARCH INFORMATION BUT I 4853 02:34:16,880 --> 02:34:18,000 THINK YOU HAVE TO DEAL WITH IT 4854 02:34:18,000 --> 02:34:19,160 ON A CASE-BY-CASE BASIS. 4855 02:34:19,160 --> 02:34:20,680 IF YOU HAVE VERY GOOD REASON TO 4856 02:34:20,680 --> 02:34:22,440 BELIEVE THERE'S TOXICITY AND 4857 02:34:22,440 --> 02:34:24,160 YOUR RESEARCH IS TO FIND WHAT 4858 02:34:24,160 --> 02:34:25,760 THE THRESHOLD VALUE IS OF 4859 02:34:25,760 --> 02:34:27,200 TOXICITY THEN IT SEEMS TO ME YOU 4860 02:34:27,200 --> 02:34:28,680 HAVE A MUCH STRONGER RATIONALE 4861 02:34:28,680 --> 02:34:29,800 FOR COMMUNICATING INDIVIDUAL 4862 02:34:29,800 --> 02:34:30,360 RESULTS. 4863 02:34:30,360 --> 02:34:32,960 BUT IN THOSE CONTEXTS, YOU'RE 4864 02:34:32,960 --> 02:34:34,160 JUST LOOKING AND YOU'RE 4865 02:34:34,160 --> 02:34:35,240 MEASURING A WHOLE BUNCH OF STUFF 4866 02:34:35,240 --> 02:34:36,240 AND YOU DON'T KNOW WHAT THAT 4867 02:34:36,240 --> 02:34:37,480 MEANS AND YOU'LL FIGURE IT OUT 4868 02:34:37,480 --> 02:34:38,720 LATER, I THINK THAT'S THE 4869 02:34:38,720 --> 02:34:42,800 HARDEST CASE TO TALK ABOUT 4870 02:34:42,800 --> 02:34:43,840 COMMUNICATING RESULTS IN A 4871 02:34:43,840 --> 02:34:45,720 MEANINGFUL WAY. 4872 02:34:45,720 --> 02:34:47,160 IT'S ALSO AN OPPORTUNITY TO SAY 4873 02:34:47,160 --> 02:34:48,200 IF YOU'RE GOING TO BE DOING THAT 4874 02:34:48,200 --> 02:34:50,400 IN TERMS OF PREPARING THOSE 4875 02:34:50,400 --> 02:34:52,600 KINDS OF RESULTS, THAT'S WHERE 4876 02:34:52,600 --> 02:34:53,760 THE OBLIGATION IS STRONGEST TO 4877 02:34:53,760 --> 02:34:55,280 DO A SUBSTUDY TO SAY ALL RIGHT, 4878 02:34:55,280 --> 02:34:56,840 HOW ARE PEOPLE DEALING WITH THIS 4879 02:34:56,840 --> 02:34:57,360 INFORMATION? 4880 02:34:57,360 --> 02:34:58,760 AND IF YOU'RE FREAKING A LOT OF 4881 02:34:58,760 --> 02:34:59,880 PEOPLE OUT AND THEY CAN'T DO 4882 02:34:59,880 --> 02:35:04,120 ANYTHING WITH THE INFORMATION, 4883 02:35:04,120 --> 02:35:09,800 THEN YOU NEED TO KNOW THAT. 4884 02:35:09,800 --> 02:35:11,160 >>FROM WHAT YOU WERE SAYING, IT 4885 02:35:11,160 --> 02:35:13,320 REMINDS ME OF THE EARLY DAYS OF 4886 02:35:13,320 --> 02:35:14,920 GENOMIC SEQUENCING WHERE THE 4887 02:35:14,920 --> 02:35:15,920 DEBATES WERE DO WE RETURN EVERY 4888 02:35:15,920 --> 02:35:17,560 STEP WE IDENTIFY OR DO WE NARROW 4889 02:35:17,560 --> 02:35:18,840 IT DOWN TO THINGS THAT WE KNOW 4890 02:35:18,840 --> 02:35:20,160 ABOUT, WHAT DO WE DO WITH THE 4891 02:35:20,160 --> 02:35:21,040 THINGS WE DON'T KNOW ANYTHING 4892 02:35:21,040 --> 02:35:21,440 ABOUT. 4893 02:35:21,440 --> 02:35:25,480 I THINK THE FIELD HAS COALESCED 4894 02:35:25,480 --> 02:35:26,760 AROUND RETURNING THOSE WE KNOW 4895 02:35:26,760 --> 02:35:28,080 ARE CLINICALLY ACTIONABLE AT 4896 02:35:28,080 --> 02:35:28,560 THIS POINT. 4897 02:35:28,560 --> 02:35:30,480 I THINK MANY WOULD STILL ARGUE 4898 02:35:30,480 --> 02:35:33,000 THAT EVEN THAT IS MATERNALISTIC 4899 02:35:33,000 --> 02:35:34,760 BECAUSE PEOPLE HAVE DIFFERING 4900 02:35:34,760 --> 02:35:36,520 VALUE SYSTEMS IN TERMS OF 4901 02:35:36,520 --> 02:35:37,480 PERSONAL UTILITY OF INFORMATION 4902 02:35:37,480 --> 02:35:38,960 EVEN IF IT'S NOT ACTIONABLE OR 4903 02:35:38,960 --> 02:35:39,960 IF IT'S JUST OTHER INFORMATION 4904 02:35:39,960 --> 02:35:41,920 THAT THEY'D LIKE TO HAVE ACCESS 4905 02:35:41,920 --> 02:35:42,480 TO. 4906 02:35:42,480 --> 02:35:44,440 I KNOW A LOT OF PEOPLE OUT THERE 4907 02:35:44,440 --> 02:35:45,040 THAT JUST WANT LITERALLY 4908 02:35:45,040 --> 02:35:45,360 EVERYTHING. 4909 02:35:45,360 --> 02:35:47,960 THEY WANT THE ENTIRE FILE, JUST 4910 02:35:47,960 --> 02:35:48,560 HAND THAT OVER. 4911 02:35:48,560 --> 02:35:50,120 BUT I THINK THERE MAY BE SOME 4912 02:35:50,120 --> 02:35:50,880 LESSONS THAT COULD BE LEARNED 4913 02:35:50,880 --> 02:35:53,400 FROM THE GENETICS AND GENOMICS 4914 02:35:53,400 --> 02:35:55,880 SPACE THAT COULD BE APPLICABLE 4915 02:35:55,880 --> 02:35:56,680 AS WELL AS YOU'RE THINKING 4916 02:35:56,680 --> 02:35:58,800 THROUGH THE EARLY DAYS OF WHAT 4917 02:35:58,800 --> 02:36:00,360 DOES A CHEMICAL EXPOSURE MEAN 4918 02:36:00,360 --> 02:36:02,200 TODAY AND HOW DO YOU HANDLE THAT 4919 02:36:02,200 --> 02:36:03,480 VERSUS SOMETHING A LITTLE BIT 4920 02:36:03,480 --> 02:36:06,080 MORE DEFINITIVE FIVE YEARS FROM 4921 02:36:06,080 --> 02:36:06,280 NOW. 4922 02:36:06,280 --> 02:36:07,520 >>MONICA, DID YOU HAVE A 4923 02:36:07,520 --> 02:36:07,800 QUESTION? 4924 02:36:07,800 --> 02:36:08,920 >>I DIDN'T HAVE A QUESTION PER 4925 02:36:08,920 --> 02:36:12,440 SE BUT I DO WANT TO JUST 4926 02:36:12,440 --> 02:36:14,360 ACKNOWLEDGE AND TO CAUTION US TO 4927 02:36:14,360 --> 02:36:16,000 REDUCE OUR OPERATION ON 4928 02:36:16,000 --> 02:36:18,200 TECHNICAL ELITISM, I DO FEEL 4929 02:36:18,200 --> 02:36:20,080 THAT SOME OF THE WAYS THAT THE 4930 02:36:20,080 --> 02:36:20,680 THOUGHT EXPERIMENTS ARE BEING 4931 02:36:20,680 --> 02:36:22,040 PLAYED OUT AND TALKED ABOUT ARE 4932 02:36:22,040 --> 02:36:24,320 ASSUMING AN INFORMATION DEFICIT 4933 02:36:24,320 --> 02:36:25,760 MODEL WITH THE RECIPIENT, WITH 4934 02:36:25,760 --> 02:36:26,960 THE PARTICIPANT, WITH THE 4935 02:36:26,960 --> 02:36:27,920 COLLABORATOR, WITH THE COMMUNITY 4936 02:36:27,920 --> 02:36:28,240 MEMBER. 4937 02:36:28,240 --> 02:36:31,400 AND I WOULD ACKNOWLEDGE THAT 4938 02:36:31,400 --> 02:36:34,040 THESE ARE MASSIVE OPPORTUNITIES 4939 02:36:34,040 --> 02:36:36,080 FOR LEARNING, AND FOR INFORMAL 4940 02:36:36,080 --> 02:36:37,080 SCIENCE EDUCATION. 4941 02:36:37,080 --> 02:36:38,960 AND SO -- AND ALSO -- SO I JUST 4942 02:36:38,960 --> 02:36:41,000 WANT TO ACKNOWLEDGE THAT YOU 4943 02:36:41,000 --> 02:36:42,280 CAN'T -- I KNOW WE DO THOUGHT 4944 02:36:42,280 --> 02:36:44,080 EXPERIMENTS, AND I KNOW THERE'S 4945 02:36:44,080 --> 02:36:45,560 ETHICISTS UP THERE WHO DO, I 4946 02:36:45,560 --> 02:36:46,800 MEAN, THAT'S WHAT A WHOLE CLASS 4947 02:36:46,800 --> 02:36:48,200 WOULD BE AND I THINK THAT'S SUCH 4948 02:36:48,200 --> 02:36:49,760 A GREAT TERM, RIGHT, THOUGHT 4949 02:36:49,760 --> 02:36:50,040 EXPERIMENT. 4950 02:36:50,040 --> 02:36:51,760 BUT THE IDEA HERE IS THAT LIKE 4951 02:36:51,760 --> 02:36:53,560 THIS OH, LIKE WE WOULD HAVE TO 4952 02:36:53,560 --> 02:36:54,960 TAKE AWAY RESOURCES FROM THE 4953 02:36:54,960 --> 02:36:56,600 RESEARCH AND IT'S LIKE, YEAH, 4954 02:36:56,600 --> 02:36:57,880 YOU TAKE AWAY RESEARCH, 4955 02:36:57,880 --> 02:36:59,720 RESEARCH, LIKE, YOU TAKE AWAY 4956 02:36:59,720 --> 02:37:02,120 SOME OF THOSE RESOURCES FOR 4957 02:37:02,120 --> 02:37:03,160 REPORT-BACK FROM THE RESEARCH 4958 02:37:03,160 --> 02:37:06,080 BECAUSE THE REPORT-BACK CAN LEAD 4959 02:37:06,080 --> 02:37:07,520 TO CHANGES THAT YOU CAN'T EVEN 4960 02:37:07,520 --> 02:37:08,320 IMAGINE RIGHT NOW BECAUSE OF THE 4961 02:37:08,320 --> 02:37:10,200 POWER OF INFORMAL SCIENCE 4962 02:37:10,200 --> 02:37:11,400 LEARNING, LIKE FREE CHOICE 4963 02:37:11,400 --> 02:37:13,280 LEARNING, WHAT PEOPLE DO WITH 4964 02:37:13,280 --> 02:37:14,520 THIS INFORMATION, AND SO I JUST 4965 02:37:14,520 --> 02:37:16,840 WANT TO -- I GUESS I'VE GOT A 4966 02:37:16,840 --> 02:37:18,720 LITTLE -- AND THE TYPES OF 4967 02:37:18,720 --> 02:37:19,560 INTERPRETATION AND KNOWLEDGE 4968 02:37:19,560 --> 02:37:20,520 CHANGES AND KNOWLEDGE GAPS THAT 4969 02:37:20,520 --> 02:37:22,320 THEY MIGHT BE ABLE TO FILL, AND 4970 02:37:22,320 --> 02:37:24,240 SO I GET A LITTLE BIT NERVOUS 4971 02:37:24,240 --> 02:37:25,280 WHEN THESE, LIKE, CONVERSATIONS 4972 02:37:25,280 --> 02:37:26,480 START TO HAPPEN WHERE I START TO 4973 02:37:26,480 --> 02:37:30,040 FEEL LIKE, THAT THERE'S AN 4974 02:37:30,040 --> 02:37:31,200 OPERATION UNDER COMPLETE DEFICIT 4975 02:37:31,200 --> 02:37:32,440 OF THE PARTICIPANT OR THE 4976 02:37:32,440 --> 02:37:34,640 RECIPIENT WHEN THEY ARE THIS 4977 02:37:34,640 --> 02:37:35,840 WEALTH OF KNOWLEDGE AND THEY'RE 4978 02:37:35,840 --> 02:37:37,000 NOT, QUOTE-UNQUOTE, JUST A 4979 02:37:37,000 --> 02:37:39,160 VESSEL THAT YOU'RE GOING TO FILL 4980 02:37:39,160 --> 02:37:40,280 UP WITH INFORMATION, THAT THEY 4981 02:37:40,280 --> 02:37:41,560 CONTAIN TONS OF INFORMATION, 4982 02:37:41,560 --> 02:37:43,400 TONS OF EXPERTISE AND KNOWLEDGE, 4983 02:37:43,400 --> 02:37:45,600 THAT NEEDS TO BE CONTEXTUALIZED 4984 02:37:45,600 --> 02:37:47,760 WITH -- LIKE WE NEED -- THESE 4985 02:37:47,760 --> 02:37:49,080 DATASETS NEED TO BE 4986 02:37:49,080 --> 02:37:49,880 CONTEXTUALIZED WITHIN THEIR 4987 02:37:49,880 --> 02:37:50,520 KNOWLEDGE BASES. 4988 02:37:50,520 --> 02:37:51,800 SO I'M JUST MAKING THAT -- I 4989 02:37:51,800 --> 02:37:53,240 MEAN, I UNDERSTAND THIS FIRST 4990 02:37:53,240 --> 02:37:54,520 SECTION WAS HISTORY AND 4991 02:37:54,520 --> 02:37:55,840 PRINCIPLES SO I STAYED QUIET 4992 02:37:55,840 --> 02:37:57,360 THROUGHOUT IT ALL TO UNDERSTAND 4993 02:37:57,360 --> 02:38:00,360 THAT THIS IS BACKGROUND SETUP 4994 02:38:00,360 --> 02:38:01,760 BUT I DO WANT TO ACKNOWLEDGE 4995 02:38:01,760 --> 02:38:02,600 THAT THESE INDIVIDUALS RECEIVING 4996 02:38:02,600 --> 02:38:03,800 THESE ARE NOT PASSIVE, AND 4997 02:38:03,800 --> 02:38:05,120 THEY'RE NOT VESSELS TO JUST BE 4998 02:38:05,120 --> 02:38:11,720 FILLED. 4999 02:38:11,720 --> 02:38:13,040 >>THANKS, MONICA. 5000 02:38:13,040 --> 02:38:14,760 I ALSO WANTED TO JUST ADD THAT 5001 02:38:14,760 --> 02:38:17,400 MANY OF THE HYPOTHETICALS THAT 5002 02:38:17,400 --> 02:38:18,880 ARE BEING RAISED ARE SITUATIONS 5003 02:38:18,880 --> 02:38:22,040 WHERE WE HAVE REAL WORLD 5004 02:38:22,040 --> 02:38:24,360 EXPERIENCE THAT PARALLELS THOSE 5005 02:38:24,360 --> 02:38:26,040 HYPOTHETICALS, AND I JUST WANTED 5006 02:38:26,040 --> 02:38:29,880 TO LIFT UP ONE EXAMPLE, THE 5007 02:38:29,880 --> 02:38:31,920 UNIVERSITY OF CINCINNATI PUBERTY 5008 02:38:31,920 --> 02:38:33,400 COHORT IN THE BREAST CANCER 5009 02:38:33,400 --> 02:38:36,040 ENVIRONMENT RESEARCH PROGRAM 5010 02:38:36,040 --> 02:38:37,320 INADVERTENTLY DISCOVERED HIGH 5011 02:38:37,320 --> 02:38:39,640 LEVELS OF PFAS IN SOME OF THE 5012 02:38:39,640 --> 02:38:39,840 GIRLS. 5013 02:38:39,840 --> 02:38:42,600 AT THE TIME, WE DIDN'T KNOW 5014 02:38:42,600 --> 02:38:43,600 WHERE IT WAS COMING FROM, WE 5015 02:38:43,600 --> 02:38:48,840 DIDN'T KNOW THE HEALTH 5016 02:38:48,840 --> 02:38:49,600 IMPLICATIONS, AND THERE WAS 5017 02:38:49,600 --> 02:38:50,920 DEBATE ABOUT REPORTING RESULTS 5018 02:38:50,920 --> 02:38:51,360 BACK. 5019 02:38:51,360 --> 02:38:54,280 THEY WERE REPORTED BACK, SUSAN 5020 02:38:54,280 --> 02:38:54,960 PINNEY LED THAT WORK. 5021 02:38:54,960 --> 02:38:56,600 THEY DID INTERVIEW THEIR 5022 02:38:56,600 --> 02:38:57,720 PARTICIPANTS AFTERWARDS. 5023 02:38:57,720 --> 02:38:59,720 THE FIRST AUTHOR OF THE PAPER IN 5024 02:38:59,720 --> 02:39:00,720 ENVIRONMENTAL HEALTH 5025 02:39:00,720 --> 02:39:02,960 PERSPECTIVES IS ANNE HERNICK, 5026 02:39:02,960 --> 02:39:06,080 AND THEY DID FIND THAT THEIR 5027 02:39:06,080 --> 02:39:07,560 PARTICIPANTS SAID, OUT LOUD, I 5028 02:39:07,560 --> 02:39:08,480 UNDERSTAND YOU DON'T KNOW WHERE 5029 02:39:08,480 --> 02:39:11,560 THIS IS COMING FROM, I 5030 02:39:11,560 --> 02:39:12,840 UNDERSTAND THAT YOU DON'T KNOW 5031 02:39:12,840 --> 02:39:13,400 THE HEALTH EFFECTS. 5032 02:39:13,400 --> 02:39:14,720 THANK YOU FOR TELLING US ABOUT 5033 02:39:14,720 --> 02:39:15,520 THIS. 5034 02:39:15,520 --> 02:39:17,840 AND YOU CAN SEE AS HISTORY HAS 5035 02:39:17,840 --> 02:39:21,840 PLAYED OUT THAT THAT INFORMATION 5036 02:39:21,840 --> 02:39:23,040 HAD POTENTIAL ACTION VALUE 5037 02:39:23,040 --> 02:39:24,240 BECAUSE IT WAS CLEAR THAT THERE 5038 02:39:24,240 --> 02:39:26,760 WAS SOME GEOGRAPHICALLY-BASED 5039 02:39:26,760 --> 02:39:29,720 EXPOSURE IN THIS COMMUNITY THAT 5040 02:39:29,720 --> 02:39:33,080 DID NEED TO BE IDENTIFIED, OR 5041 02:39:33,080 --> 02:39:38,400 PURSUED IN SOME WAY, AND THAT 5042 02:39:38,400 --> 02:39:39,560 THESE EXPOSURES WE NOW KNOW MAY 5043 02:39:39,560 --> 02:39:50,000 HAVE HEALTH IMPLICATIONS. 5044 02:39:50,640 --> 02:39:52,760 >>I JUST WANTED TO EMPHASIZE ON 5045 02:39:52,760 --> 02:39:53,280 WHAT MONICA SAID. 5046 02:39:53,280 --> 02:39:57,120 IT REALLY GOT ME EMOTIONAL. 5047 02:39:57,120 --> 02:39:59,400 BECAUSE I DEALT WITH SO MANY 5048 02:39:59,400 --> 02:40:01,360 HEALTH ISSUES THROUGHOUT ALL OF 5049 02:40:01,360 --> 02:40:03,680 MY PREGNANCIES. 5050 02:40:03,680 --> 02:40:09,320 I'VE HAD FIVE MISCARRIAGES, AND 5051 02:40:09,320 --> 02:40:11,160 IT WOULD BE NICE AS A 5052 02:40:11,160 --> 02:40:13,600 PARTICIPANT TO GET OUR REPORT 5053 02:40:13,600 --> 02:40:15,360 BACKS. 5054 02:40:15,360 --> 02:40:16,480 BECAUSE THEN THAT WAY, IT PUTS 5055 02:40:16,480 --> 02:40:20,200 ME IN A POSITION TO BETTER 5056 02:40:20,200 --> 02:40:21,480 UNDERSTAND WHAT MY EXPOSURES 5057 02:40:21,480 --> 02:40:27,040 ARE, WHAT MY TOXICITIES ARE, AND 5058 02:40:27,040 --> 02:40:29,360 HOW I CAN CHANGE THAT IN MY 5059 02:40:29,360 --> 02:40:31,640 FAMILY, WILL THIS AIIVET MY 5060 02:40:31,640 --> 02:40:35,800 DAUGHTER, WHO IS A PARTICIPANT, 5061 02:40:35,800 --> 02:40:37,960 WHO HAS DEVELOPMENTAL DELAYS AND 5062 02:40:37,960 --> 02:40:40,920 WHO HAS DISABILITIES, WHO WAS 5063 02:40:40,920 --> 02:40:42,320 BORN PREMATURE, ALL FOUR OF MY 5064 02:40:42,320 --> 02:40:44,400 CHILDREN, LIVING CHILDREN, WERE 5065 02:40:44,400 --> 02:40:47,760 BORN PREMATURE, AND THAT'S JUST 5066 02:40:47,760 --> 02:40:49,200 SOMETHING THAT I WOULD LIKE TO 5067 02:40:49,200 --> 02:40:50,320 KNOW AS A PARTICIPANT. 5068 02:40:50,320 --> 02:40:52,600 IT'S SOMETHING THAT I WOULD LIKE 5069 02:40:52,600 --> 02:40:54,560 TO EDUCATE MY COMMUNITY ABOUT 5070 02:40:54,560 --> 02:40:59,360 BEING A WOMAN'S HEALTHCARE 5071 02:40:59,360 --> 02:41:00,720 NURSE, I WOULD LIKE TO EDUCATE 5072 02:41:00,720 --> 02:41:01,240 MY PATIENTS ABOUT THAT. 5073 02:41:01,240 --> 02:41:02,640 I WOULD LIKE TO TEACH THE 5074 02:41:02,640 --> 02:41:09,680 YOUNGER GENERATIONS ABOUT THAT. 5075 02:41:09,680 --> 02:41:10,920 BECAUSE OF ECHO AND BECAUSE OF 5076 02:41:10,920 --> 02:41:12,680 ME BEING A PARTICIPANT AND 5077 02:41:12,680 --> 02:41:17,080 EDUCATING MY DAUGHTER WHO IS A 5078 02:41:17,080 --> 02:41:19,560 NEW MOTHER TO A 1-YEAR-OLD CHILD 5079 02:41:19,560 --> 02:41:21,000 WHO HAS AUTISM. 5080 02:41:21,000 --> 02:41:22,560 WE NEVER HAD AUTISM IN MY 5081 02:41:22,560 --> 02:41:23,520 FAMILY. 5082 02:41:23,520 --> 02:41:25,920 MY DAUGHTER IS ACUTE AUTISTIC. 5083 02:41:25,920 --> 02:41:28,440 AND SINCE THOSE THINGS HAD AROSE 5084 02:41:28,440 --> 02:41:31,840 IN OUR FAMILY, SHE WENT TO -- 5085 02:41:31,840 --> 02:41:33,040 SHE IS COMPLETING HER NURSING 5086 02:41:33,040 --> 02:41:35,640 AND RESEARCH NURSING. 5087 02:41:35,640 --> 02:41:39,800 SHE'S A BIOCHEMIST MAJOR IN 5088 02:41:39,800 --> 02:41:41,240 BIOLOGY, CHEMISTRY, AND SO WE 5089 02:41:41,240 --> 02:41:43,840 HAVE ALL OF THESE QUESTIONS AND 5090 02:41:43,840 --> 02:41:46,080 SHE WORKS WITH THE JOHN HOPKINS 5091 02:41:46,080 --> 02:41:48,680 PROGRAM AND THEY'RE ABLE TO GET 5092 02:41:48,680 --> 02:41:49,320 THEIR RESULTS BACK. 5093 02:41:49,320 --> 02:41:52,800 THEY'RE ABLE TO TELL THEIR 5094 02:41:52,800 --> 02:41:56,800 PARTICIPANTS, YOU KNOW, HOW -- 5095 02:41:56,800 --> 02:41:58,400 WELL, THEIR STUDY IS ON, YOU 5096 02:41:58,400 --> 02:42:00,560 KNOW, COVID AND THE 5097 02:42:00,560 --> 02:42:03,480 IMMUNIZATIONS IN OUR POPULATION 5098 02:42:03,480 --> 02:42:05,560 IN COMPARISON TO POPULATIONS ALL 5099 02:42:05,560 --> 02:42:08,280 OVER THE UNITED STATES, THAT 5100 02:42:08,280 --> 02:42:10,720 PUTS OUR GENERAL CULTURAL -- OUR 5101 02:42:10,720 --> 02:42:13,080 GENERAL -- THE NAVAJO NATION IN 5102 02:42:13,080 --> 02:42:16,480 A CERTAIN POPULATION AND A 5103 02:42:16,480 --> 02:42:17,680 CRITERIA TO WHERE WE CAN 5104 02:42:17,680 --> 02:42:19,440 UNDERSTAND HOW OUR HEALTH 5105 02:42:19,440 --> 02:42:20,120 DISABILITIES, LIKE DIABETES, 5106 02:42:20,120 --> 02:42:23,400 OBESITY AND WHATNOT PERTAINS TO 5107 02:42:23,400 --> 02:42:26,120 THE DIFFERENT EFFECTS OF COVID. 5108 02:42:26,120 --> 02:42:27,560 THOSE ARE THINGS -- AND THE SAME 5109 02:42:27,560 --> 02:42:29,960 GOES FOR ME BEING IN A WOMAN'S 5110 02:42:29,960 --> 02:42:33,240 HEALTH PRACTICE, YOU KNOW, I 5111 02:42:33,240 --> 02:42:35,800 KNOW YOU GUYS ARE NOT CDC, BUT 5112 02:42:35,800 --> 02:42:38,200 CDC CAN GET BACK TO US ON LIKE 5113 02:42:38,200 --> 02:42:39,880 OUR PAP SMEARS. 5114 02:42:39,880 --> 02:42:45,080 THEY CHANTHEY CHANGE THOSE GUIDS 5115 02:42:45,080 --> 02:42:47,120 LIKE EVERY 6 MONTHS ON HOW OFTEN 5116 02:42:47,120 --> 02:42:49,000 WE SHOULD BE DOING PAP SMEARS 5117 02:42:49,000 --> 02:42:51,080 BASED ON WHAT KINDS OF 5118 02:42:51,080 --> 02:42:52,040 ABNORMALITIES COME BACK FOR OUR 5119 02:42:52,040 --> 02:42:52,360 PATIENTS. 5120 02:42:52,360 --> 02:42:54,240 THERE'S GOT TO BE A WAY WE CAN 5121 02:42:54,240 --> 02:42:55,880 GET THESE REPORT-BACKS SOONER 5122 02:42:55,880 --> 02:42:57,120 THAN -- IT'S BEEN THREE YEARS 5123 02:42:57,120 --> 02:42:58,160 SINCE I'VE -- YOU KNOW, MY 5124 02:42:58,160 --> 02:42:59,800 DAUGHTER IS GOING TO BE 4 YEARS 5125 02:42:59,800 --> 02:43:02,360 OLD, SHE'S COMING UP ON HER 5126 02:43:02,360 --> 02:43:05,960 4-YEAR EVALUATION, AND I'M 5127 02:43:05,960 --> 02:43:07,320 THANKFUL FOR THE -- YOU KNOW, 5128 02:43:07,320 --> 02:43:08,800 THE REFERRALS THAT THE PROGRAM 5129 02:43:08,800 --> 02:43:11,760 HAS, BUT THEN THAT STILL DOESN'T 5130 02:43:11,760 --> 02:43:13,280 ANSWER MY QUESTION ON IS IT 5131 02:43:13,280 --> 02:43:15,560 BECAUSE OF SOMETHING I DID, IS 5132 02:43:15,560 --> 02:43:16,760 IT BECAUSE OF SOMETHING THAT I 5133 02:43:16,760 --> 02:43:18,520 HAD GENETICALLY OR IS IT BECAUSE 5134 02:43:18,520 --> 02:43:20,400 OF SOMETHING THAT WE WERE 5135 02:43:20,400 --> 02:43:28,600 EXPOSED TO? 5136 02:43:28,600 --> 02:43:32,960 >>THANK YOU FOR SHARING THAT. 5137 02:43:32,960 --> 02:43:33,960 I THINK IN THE INTEREST OF TIME, 5138 02:43:33,960 --> 02:43:34,600 WE'RE GOING TO CLOSE. 5139 02:43:34,600 --> 02:43:38,320 I NOI KNOW WE'RE BEHIND FOR THIS 5140 02:43:38,320 --> 02:43:38,560 SESSION. 5141 02:43:38,560 --> 02:43:41,080 SO I JUST WANTED TO THANK AGAIN 5142 02:43:41,080 --> 02:43:42,600 ALL THE SPEAKERS AND THE 5143 02:43:42,600 --> 02:43:47,320 DISCUSSANT AND I THINK THIS WAS 5144 02:43:47,320 --> 02:43:48,680 REALLY USEFUL TO KICK START THE 5145 02:43:48,680 --> 02:43:49,600 WORKSHOP. 5146 02:43:49,600 --> 02:43:52,520 >>THANKS, EVERYONE. 5147 02:43:52,520 --> 02:43:54,920 WE'RE ONLY A HALF-HOUR BEHIND. 5148 02:43:54,920 --> 02:43:58,320 SO HOW ABOUT WE BEGIN AGAIN AT 5149 02:43:58,320 --> 02:43:59,520 11:55, AND BECAUSE WE HAVE SOME 5150 02:43:59,520 --> 02:44:00,840 TIME AT THE END OF THE DAY, 5151 02:44:00,840 --> 02:44:02,720 RIGHT, CLAY, WE COULD STILL HAVE 5152 02:44:02,720 --> 02:44:03,920 A REASONABLE LUNCH HOUR EVEN IF 5153 02:44:03,920 --> 02:44:13,400 WE HAVE A FULL SESSION 2? 5154 02:44:13,400 --> 02:44:15,240 >>GOOD AFTERNOON, EVERYONE. 5155 02:44:15,240 --> 02:44:20,000 MY NAME IS SUNDANIA WONNUM. 5156 02:44:20,000 --> 02:44:21,320 I'M EXCITED TO PRESENT THE NEXT 5157 02:44:21,320 --> 02:44:23,360 SESSION WHICH IS ON THE VALUE OF 5158 02:44:23,360 --> 02:44:25,240 INDIVIDUAL RESULTS TO 5159 02:44:25,240 --> 02:44:27,960 PARTICIPANTS FROM THEIR OWN 5160 02:44:27,960 --> 02:44:28,520 PERSPECTIVE. 5161 02:44:28,520 --> 02:44:30,280 CHAIRING THIS SESSION IS 5162 02:44:30,280 --> 02:44:33,760 DR. JOHNNYE LEWIS, WHO IS THE 5163 02:44:33,760 --> 02:44:35,800 PROFESSOR -- A PROFESSOR OF 5164 02:44:35,800 --> 02:44:36,320 COLLEGE OF PHARMACY AT THE 5165 02:44:36,320 --> 02:44:38,880 UNIVERSITY OF NEW MEXICO, WHERE 5166 02:44:38,880 --> 02:44:41,040 HER FOCUS IS ON ADDRESSING MAJOR 5167 02:44:41,040 --> 02:44:42,240 ENVIRONMENTAL HEALTH DISPARITIES 5168 02:44:42,240 --> 02:44:44,240 THAT ADVERSELY IMPACT INDIGENOUS 5169 02:44:44,240 --> 02:44:46,240 PEOPLES FROM ACROSS THE U.S., 5170 02:44:46,240 --> 02:44:47,600 PARTICULARLY COMMUNITY MEMBERS 5171 02:44:47,600 --> 02:44:48,840 AND TRIBAL LEADERSHIP. 5172 02:44:48,840 --> 02:44:50,800 AND THERE SHE DIRECTS THE 5173 02:44:50,800 --> 02:44:52,000 COMMUNITY -- THE UNIVERSITY OF 5174 02:44:52,000 --> 02:44:54,960 MEXICO COMMUNITY ENVIRONMENTAL 5175 02:44:54,960 --> 02:44:56,320 HEALTH PROGRAM THREE CENTER 5176 02:44:56,320 --> 02:44:56,800 GRANTS. 5177 02:44:56,800 --> 02:44:59,960 BEFORE THAT, WE WILL HAVE TWO 5178 02:44:59,960 --> 02:45:00,240 SPEAKERS. 5179 02:45:00,240 --> 02:45:04,240 WE WILL HAVE JYOTI ANGAL FROM 5180 02:45:04,240 --> 02:45:06,320 AVERA RESEARCH INSTITUTE, AS 5181 02:45:06,320 --> 02:45:07,920 WELL AS JULIE HERBSTMAN FROM THE 5182 02:45:07,920 --> 02:45:18,280 COLUMBIA UNIVERSITY. 5183 02:45:29,360 --> 02:45:32,480 >>GOOD AFTERNOON, EVERYONE. 5184 02:45:32,480 --> 02:45:35,760 CAN YOU ALL HEAR ME OKAY? 5185 02:45:35,760 --> 02:45:38,000 I'M GLAD EVERYBODY CAN SEE ME. 5186 02:45:38,000 --> 02:45:38,360 , 5187 02:45:38,360 --> 02:45:39,200 TOO, WITH THE HEIGHT OF THE 5188 02:45:39,200 --> 02:45:41,200 PODIUM. 5189 02:45:41,200 --> 02:45:44,160 SO I'M REALLY EXCITED TO BE 5190 02:45:44,160 --> 02:45:45,920 HERE, AND BE A PART OF THIS 5191 02:45:45,920 --> 02:45:46,360 DISCUSSION. 5192 02:45:46,360 --> 02:45:49,520 I THINK WE'VE HAD AN EXCITING 5193 02:45:49,520 --> 02:45:51,440 FIRST SESSION WHERE YOU HEARD 5194 02:45:51,440 --> 02:45:52,920 SEVERAL DIFFERENT OPINIONS, BUT 5195 02:45:52,920 --> 02:45:55,800 SORT OF THE MAIN THEME WAS WE 5196 02:45:55,800 --> 02:45:57,640 NEED TO HEAR FROM PARTICIPANTS, 5197 02:45:57,640 --> 02:46:00,240 WE NEED TO KNOW WHAT THEY WANT. 5198 02:46:00,240 --> 02:46:06,920 IN ORDER TO DO A BETTER JOB OF 5199 02:46:06,920 --> 02:46:08,240 ALIGNING OUR RESOURCES IN 5200 02:46:08,240 --> 02:46:08,880 RETURNING RESULTS. 5201 02:46:08,880 --> 02:46:10,160 SO WITH THAT IN MIND, I'M GOING 5202 02:46:10,160 --> 02:46:13,360 TO SHARE SOME OF MY RECENT 5203 02:46:13,360 --> 02:46:16,600 DISSERTATION WORK ON THIS TOPIC, 5204 02:46:16,600 --> 02:46:20,360 AND I HAD THE PRIVILEGE OF 5205 02:46:20,360 --> 02:46:21,440 WORKING WITH OUR ECHO 5206 02:46:21,440 --> 02:46:22,080 PARTICIPANTS. 5207 02:46:22,080 --> 02:46:24,640 I REPRESENT THE SOUTH DAKOTA 5208 02:46:24,640 --> 02:46:26,040 ECHO COHORT, AND IN RESPONSE TO 5209 02:46:26,040 --> 02:46:27,520 THE GROWING CALL OF WE NEED TO 5210 02:46:27,520 --> 02:46:30,480 ASK THEM, THAT'S WHAT I DID, I 5211 02:46:30,480 --> 02:46:31,800 ASKED THEM WHAT THEY WANTED AND 5212 02:46:31,800 --> 02:46:36,520 HOW THEY WANTED. 5213 02:46:36,520 --> 02:46:38,600 SO WE TALKED ABOUT THIS EARLIER, 5214 02:46:38,600 --> 02:46:41,120 BUT JUST A QUICK REVIEW OF WHAT 5215 02:46:41,120 --> 02:46:43,720 DO WE KNOW ABOUT PARTICIPANT 5216 02:46:43,720 --> 02:46:44,480 PERSPECTIVE SO FAR. 5217 02:46:44,480 --> 02:46:46,480 SO WE KNOW THAT THEY'RE 5218 02:46:46,480 --> 02:46:47,200 ENTHUSIASTIC ABOUT RECEIVING 5219 02:46:47,200 --> 02:46:47,600 RESULTS. 5220 02:46:47,600 --> 02:46:49,200 WE KNOW THAT PARTICIPANT 5221 02:46:49,200 --> 02:46:49,760 OPINIONS DIFFER. 5222 02:46:49,760 --> 02:46:51,600 IF YOU ASK FOUR DIFFERENT 5223 02:46:51,600 --> 02:46:53,120 PEOPLE, YOU MIGHT GET DIFFERENT 5224 02:46:53,120 --> 02:46:54,800 RESPONSES. 5225 02:46:54,800 --> 02:46:56,440 OPINIONS AND PREFERENCES DIFFER, 5226 02:46:56,440 --> 02:46:58,840 AND WE ALSO KNOW THE RETURN OF 5227 02:46:58,840 --> 02:47:00,120 RESULTS IS ASSOCIATED WITH 5228 02:47:00,120 --> 02:47:02,480 INCREASED MOTIVATION TO 5229 02:47:02,480 --> 02:47:04,200 PARTICIPATE, AND IS SEEN AS AN 5230 02:47:04,200 --> 02:47:08,000 ACT OF RECIPROCITY. 5231 02:47:08,000 --> 02:47:09,520 WHAT DO WE NEED TO FIND OUT? 5232 02:47:09,520 --> 02:47:11,760 WE NEED TO FOCUS NOW ON RETURN 5233 02:47:11,760 --> 02:47:13,160 OF RESULTS BEYOND GENETIC 5234 02:47:13,160 --> 02:47:13,560 RESULTS. 5235 02:47:13,560 --> 02:47:16,960 AND WE'VE TALKED ABOUT THIS TOO, 5236 02:47:16,960 --> 02:47:17,840 LOOKING AT RESULTS THAT 5237 02:47:17,840 --> 02:47:19,280 TYPICALLY COME FROM COHORT 5238 02:47:19,280 --> 02:47:20,760 STUDIES LIKE ECHO. 5239 02:47:20,760 --> 02:47:22,800 PHYSICAL MEASURES, SELF-REPORTED 5240 02:47:22,800 --> 02:47:24,520 DATA, VARIABLE DATA. 5241 02:47:24,520 --> 02:47:26,480 WE NEED TO FOCUS ON RESULTS OF 5242 02:47:26,480 --> 02:47:31,960 NON-CLINICAL SIGNIFICANCE. 5243 02:47:31,960 --> 02:47:32,600 BECAUSE THAT'S TYPICALLY 5244 02:47:32,600 --> 02:47:33,880 RETURNED IN A NORMAL SETTING, 5245 02:47:33,880 --> 02:47:36,080 AND HOW DO WE DO A BETTER JOB OF 5246 02:47:36,080 --> 02:47:37,200 RETURNING RESULTS TO PREGNANT 5247 02:47:37,200 --> 02:47:40,080 PEOPLE AND CHILDREN. 5248 02:47:40,080 --> 02:47:42,160 SO AS MATT ALLUDED EARLIER, ECHO 5249 02:47:42,160 --> 02:47:43,320 COLLECTS A WEALTH OF DATA 5250 02:47:43,320 --> 02:47:45,320 LOOKING AT AN INDIVIDUAL GOING 5251 02:47:45,320 --> 02:47:48,280 FROM SOCIETY TO BIOLOGY, AND SO 5252 02:47:48,280 --> 02:47:52,640 WITH THAT IN MIND, THE ECHO TASK 5253 02:47:52,640 --> 02:47:53,960 FORCE ON RETURN OF RESULTS WAS 5254 02:47:53,960 --> 02:47:59,640 CHARGED WITH CREATING A POLICY 5255 02:47:59,640 --> 02:48:01,440 TO HELP RETURN THESE RESULTS. 5256 02:48:01,440 --> 02:48:03,040 OUR APPROACH LIKE MANY SORT OF 5257 02:48:03,040 --> 02:48:05,760 POLICY APPROACHES WAS SORT OF 5258 02:48:05,760 --> 02:48:07,840 RESEARCHER-DRIVEN WITH FOCUS ON 5259 02:48:07,840 --> 02:48:09,840 RESULTS THAT WERE CLINICALLY 5260 02:48:09,840 --> 02:48:11,480 SIGNIFICANT, AS WELL AS THOSE 5261 02:48:11,480 --> 02:48:12,960 THAT HAD RESULTS WITH 5262 02:48:12,960 --> 02:48:15,720 ESTABLISHED NORMATIVE STANDARDS. 5263 02:48:15,720 --> 02:48:19,120 GIVEN THE DIVERSITY IN THE ECHO 5264 02:48:19,120 --> 02:48:21,600 COHORT, IT SEEMED APPROPRIATE AT 5265 02:48:21,600 --> 02:48:23,280 THAT TIME TO PUT TOGETHER 5266 02:48:23,280 --> 02:48:26,200 POLICIES THAT FOCUSED ON RESULTS 5267 02:48:26,200 --> 02:48:27,520 THAT HAD ESTABLISHED VALID 5268 02:48:27,520 --> 02:48:28,600 STANDARDS. 5269 02:48:28,600 --> 02:48:30,240 AND ONE OF THE REASONS, AND I 5270 02:48:30,240 --> 02:48:31,440 REMEMBER RACHEL TO THIS DAY 5271 02:48:31,440 --> 02:48:33,280 SAYING THAT I WISH WE COULD ASK, 5272 02:48:33,280 --> 02:48:35,400 I WISH WE COULD ASK THEM WHAT 5273 02:48:35,400 --> 02:48:37,040 THEY WANTED THAT WOULD HELP US 5274 02:48:37,040 --> 02:48:40,960 CREATE A BETTER POLICY, WAS THAT 5275 02:48:40,960 --> 02:48:42,880 WE DID NOT HAVE PARTICIPANT 5276 02:48:42,880 --> 02:48:46,880 PERSPECTIVES FROM OUR COHORT. 5277 02:48:46,880 --> 02:48:49,480 SO WITH THAT IN MIND, I HAVE 5278 02:48:49,480 --> 02:48:51,520 THREE QUESTIONS THAT I ASK OF 5279 02:48:51,520 --> 02:48:51,920 PARTICIPANTS. 5280 02:48:51,920 --> 02:48:53,760 SO TO WHAT EXTENT DOES RESULT 5281 02:48:53,760 --> 02:48:55,600 TYPE, WHEN YOU LOOK AT DIFFERENT 5282 02:48:55,600 --> 02:48:57,760 RESULTS DATA THAT GENERATES 5283 02:48:57,760 --> 02:48:59,000 RESULTS IN ECHO. 5284 02:48:59,000 --> 02:49:02,520 TO WHAT EXTENT DOES RESULT TYPE 5285 02:49:02,520 --> 02:49:03,600 AND STANDARDIZATION STATUS, 5286 02:49:03,600 --> 02:49:04,800 WHICH IS WHETHER OR NOT THESE 5287 02:49:04,800 --> 02:49:06,360 RESULTS CAN BE PLACED IN 5288 02:49:06,360 --> 02:49:08,080 NORMATIVE CONTEXT, DOES IT 5289 02:49:08,080 --> 02:49:09,000 INFLUENCE PARTICIPANT 5290 02:49:09,000 --> 02:49:10,200 PERCEPTIONS OF VALUE OF 5291 02:49:10,200 --> 02:49:13,480 RECEIVING RESULTS? 5292 02:49:13,480 --> 02:49:15,240 ARE THERE RACIAL DIFFERENCES 5293 02:49:15,240 --> 02:49:16,320 BETWEEN WHITE AND AMERICAN 5294 02:49:16,320 --> 02:49:17,480 INDIAN PARTICIPANTS IN THE 5295 02:49:17,480 --> 02:49:19,920 ASSOCIATION OF RESULT TYPE? 5296 02:49:19,920 --> 02:49:21,680 I CHOSE AMERICAN INDIAN GIVEN 5297 02:49:21,680 --> 02:49:23,000 THAT THAT'S THE LARGEST MINORITY 5298 02:49:23,000 --> 02:49:24,680 IN OUR STATE IN SOUTH DAKOTA. 5299 02:49:24,680 --> 02:49:26,000 AND THEN THE THIRD QUESTION I 5300 02:49:26,000 --> 02:49:29,960 WANTED TO EXPLORE WAS HOW DO 5301 02:49:29,960 --> 02:49:30,720 PARTICIPANTS DECIDE PERSONAL 5302 02:49:30,720 --> 02:49:35,600 VALUE OF INDIVIDUAL RESULTS? 5303 02:49:35,600 --> 02:49:36,880 SO THERE WAS A MIXED METHODS 5304 02:49:36,880 --> 02:49:41,360 DESIGN AND IN THE FIRST PART, WE 5305 02:49:41,360 --> 02:49:42,800 COMPARED THE RESULT TYPE WHICH 5306 02:49:42,800 --> 02:49:45,320 HAD THREE LEVELS, LOOKING AT 5307 02:49:45,320 --> 02:49:45,960 SURVEY RESULTS, BIOSPECIMEN 5308 02:49:45,960 --> 02:49:49,160 RESULTS AND PHYSIOLOGY RESULTS 5309 02:49:49,160 --> 02:49:50,880 AND LOOKING AT TWO LEVELS OF 5310 02:49:50,880 --> 02:49:51,520 STANDARDIZATION, WHETHER OR NOT 5311 02:49:51,520 --> 02:49:52,320 THESE RESULTS COULD BE EXPLAINED 5312 02:49:52,320 --> 02:49:59,760 IN NORMATIVE CONTEXT. 5313 02:49:59,760 --> 02:50:01,440 EACH PARTICIPANT WAS PRESENTED 5314 02:50:01,440 --> 02:50:02,960 ONE OF SIX SCENARIOS, RANDOMIZE 5315 02:50:02,960 --> 02:50:03,920 DOLLARS INTO TWO DIFFERENT 5316 02:50:03,920 --> 02:50:04,920 GROUPS BASED ON THE DESIGN. 5317 02:50:04,920 --> 02:50:06,880 SO THIS IS AN EXAMPLE OF A 5318 02:50:06,880 --> 02:50:08,760 SCENARIO THAT A PARTICIPANT WAS 5319 02:50:08,760 --> 02:50:11,680 PRESENTED REGARDING A CHEMICAL 5320 02:50:11,680 --> 02:50:14,840 EXPOSURE RESULTS, AND IT GOES TO 5321 02:50:14,840 --> 02:50:15,960 WHAT JOHNNYE HAD BROUGHT UP 5322 02:50:15,960 --> 02:50:16,960 EARLIER IS THAT IN THIS 5323 02:50:16,960 --> 02:50:18,360 SCENARIO, THE PARTICIPANT WAS 5324 02:50:18,360 --> 02:50:20,280 TOLD THAT THE URINE SAMPLE HAD 5325 02:50:20,280 --> 02:50:21,680 TESTED POSITIVE FOR A CERTAIN 5326 02:50:21,680 --> 02:50:23,920 KIND OF PHTHALATE, AND THEN SHE 5327 02:50:23,920 --> 02:50:26,120 WAS ALSO TOLD WHETHER OR NOT HER 5328 02:50:26,120 --> 02:50:27,720 RESULTS WOULD BE CONSIDERED 5329 02:50:27,720 --> 02:50:31,720 ACCEPTABLE OR NOT ACCEPTABLE. 5330 02:50:31,720 --> 02:50:33,440 SO MEANING THAT SHE WAS TOLD 5331 02:50:33,440 --> 02:50:34,120 THAT WHETHER OR NOT THEY COULD 5332 02:50:34,120 --> 02:50:36,600 BE COMPARED TO OTHER WOMEN OF 5333 02:50:36,600 --> 02:50:39,680 HER AGE GROUP. 5334 02:50:39,680 --> 02:50:42,760 SO WHAT DID WE FIND WHEN WE 5335 02:50:42,760 --> 02:50:44,800 ADMINISTERED THESE SCENARIOS TO 5336 02:50:44,800 --> 02:50:47,040 PARTICIPANTS? 5337 02:50:47,040 --> 02:50:51,080 WE HAD A TOTAL OF 2700, 5338 02:50:51,080 --> 02:50:52,280 APPROXIMATELY, PARTICIPANTS THAT 5339 02:50:52,280 --> 02:50:53,480 WERE ELIGIBLE AND RECEIVED A 5340 02:50:53,480 --> 02:50:55,040 SURVEY, WITH THE FINAL DATASET 5341 02:50:55,040 --> 02:50:58,560 OF ABOUT 1587 PARTICIPANTS THAT 5342 02:50:58,560 --> 02:50:59,120 RESPONDED TO THESE SCENARIO 5343 02:50:59,120 --> 02:51:04,320 QUESTIONS. 5344 02:51:04,320 --> 02:51:06,120 I WANTED TO COMPARE -- THIS IS A 5345 02:51:06,120 --> 02:51:07,560 BUSY TABLE, SO DON'T FOCUS ON 5346 02:51:07,560 --> 02:51:08,520 THE NUMBERS, I'LL TALK YOU 5347 02:51:08,520 --> 02:51:09,360 THROUGH IT. 5348 02:51:09,360 --> 02:51:12,120 I WANTED TO COMPARE IF 5349 02:51:12,120 --> 02:51:13,440 PARTICIPANTS IN EACH OF THESE 5350 02:51:13,440 --> 02:51:15,320 SIX GROUPS WERE DIFFERENT OR 5351 02:51:15,320 --> 02:51:17,320 SAME WITH EACH OTHER, AND 5352 02:51:17,320 --> 02:51:19,920 LOOKING AT ACROSS MATERNAL AGE, 5353 02:51:19,920 --> 02:51:23,840 RACE, EDUCATION, WE DID NOT FIND 5354 02:51:23,840 --> 02:51:26,280 ANY DIFFERENCES BETWEEN EACH OF 5355 02:51:26,280 --> 02:51:28,480 THE SIX GROUPS MAKING US FEEL 5356 02:51:28,480 --> 02:51:29,840 FAIRLY GOOD ABOUT HOW THE 5357 02:51:29,840 --> 02:51:30,680 RANDOMIZATION WORKED IN THESE 5358 02:51:30,680 --> 02:51:32,720 GROUPS. 5359 02:51:32,720 --> 02:51:34,720 SO FOR THE FIRST QUESTION, TO 5360 02:51:34,720 --> 02:51:37,760 WHAT EXTENT DO RESULT TYPE AND 5361 02:51:37,760 --> 02:51:38,760 STANDARDIZATION INFLUENCE 5362 02:51:38,760 --> 02:51:40,080 PARTICIPANT PERSPECTIVES? 5363 02:51:40,080 --> 02:51:42,040 WE FOUND NO INTERACTION BETWEEN 5364 02:51:42,040 --> 02:51:45,160 RESULT TYPE AND STANDARDIZATION 5365 02:51:45,160 --> 02:51:46,920 STATUS. 5366 02:51:46,920 --> 02:51:48,560 BUT THE MAIN EFFECTS WERE 5367 02:51:48,560 --> 02:51:49,320 SIGNIFICANT. 5368 02:51:49,320 --> 02:51:50,360 WE FOUND STANDARDIZED RESULTS, 5369 02:51:50,360 --> 02:51:52,040 SO AGAIN, RESULTS THAT COULD BE 5370 02:51:52,040 --> 02:51:53,400 EXPLAINED WITHIN A NORMATIVE 5371 02:51:53,400 --> 02:51:55,040 CONTEXT, WERE ATTRIBUTED A 5372 02:51:55,040 --> 02:51:57,760 HIGHER VALUE THAN 5373 02:51:57,760 --> 02:51:58,760 NON-STANDARDIZED RESULTS. 5374 02:51:58,760 --> 02:52:00,680 AND THEN THE RESULT TYPE WAS 5375 02:52:00,680 --> 02:52:02,240 STRONGLY ASSOCIATED WITH 5376 02:52:02,240 --> 02:52:03,760 PERCEIVED VALUE OF INDIVIDUAL 5377 02:52:03,760 --> 02:52:05,400 RESULTS WHERE BIOSPECIMEN 5378 02:52:05,400 --> 02:52:06,880 RESULTS HAD A HIGHER PERCEIVED 5379 02:52:06,880 --> 02:52:09,240 VALUE THAN SURVEY RESULTS OR 5380 02:52:09,240 --> 02:52:17,560 PHYSIOLOGY RESULTS. 5381 02:52:17,560 --> 02:52:18,680 THIS GEOPLOT SORT OF DESCRIBES 5382 02:52:18,680 --> 02:52:19,800 THE RESULTS I JUST TALKED ABOUT. 5383 02:52:19,800 --> 02:52:22,280 IF YOU LOOK ACROSS THE FIGURE, 5384 02:52:22,280 --> 02:52:23,400 THE BLUE GROUP IS THOSE THAT 5385 02:52:23,400 --> 02:52:25,160 RECEIVED THE STANDARDIZED 5386 02:52:25,160 --> 02:52:26,880 SCENARIO, AND THEN THE ORANGE 5387 02:52:26,880 --> 02:52:28,880 ONE RECEIVED THE UNSTANDARDIZED 5388 02:52:28,880 --> 02:52:29,440 SCENARIO. 5389 02:52:29,440 --> 02:52:31,400 AND IF YOU LOOK AT IT, THE MEAN 5390 02:52:31,400 --> 02:52:34,120 IS THE BOLD BLACK LINE, SO THE 5391 02:52:34,120 --> 02:52:35,680 MEANS IN THOSE GROUPS WERE 5392 02:52:35,680 --> 02:52:37,280 CONSISTENTLY HIGHER FOR THE 5393 02:52:37,280 --> 02:52:39,440 STANDARDIZED THAN THE 5394 02:52:39,440 --> 02:52:43,640 UNSTANDARDIZED GROUPS. 5395 02:52:43,640 --> 02:52:46,720 SO FOR THE THIRD QUESTION ON HOW 5396 02:52:46,720 --> 02:52:48,600 TO PARTICIPANTS -- HOW DO THEY 5397 02:52:48,600 --> 02:52:49,760 PERCEIVE THE VALUE AND HOW DO 5398 02:52:49,760 --> 02:52:51,360 THEY MAKE DECISIONS ABOUT THE 5399 02:52:51,360 --> 02:52:53,120 VALUE, WE DID A QUALITATIVE 5400 02:52:53,120 --> 02:52:54,400 APPROACH. 5401 02:52:54,400 --> 02:52:56,520 AND INTERVIEWED A SUBGROUP OF 5402 02:52:56,520 --> 02:52:57,320 PARTICIPANTS WHO HAD 5403 02:52:57,320 --> 02:52:57,680 <<A>> 5404 02:52:57,680 --> 02:52:59,560 ED THE SURVEY QUESTIONS. 5405 02:52:59,560 --> 02:53:00,760 WE HAD 10 PARTICIPANTS FROM THAT 5406 02:53:00,760 --> 02:53:04,600 GROUP. 5407 02:53:04,600 --> 02:53:06,440 THEY WERE RANDOMLY SELECTED FROM 5408 02:53:06,440 --> 02:53:08,200 THOSE ELIGIBLE FOR THE 5409 02:53:08,200 --> 02:53:10,480 QUANTITATIVE STUDY AND 5410 02:53:10,480 --> 02:53:13,240 STRATIFIED BY RACE AND MATERNAL 5411 02:53:13,240 --> 02:53:13,920 EDUCATION. 5412 02:53:13,920 --> 02:53:17,960 WE OVERSAMPLED AMERICAN INDIAN 5413 02:53:17,960 --> 02:53:19,160 PARTICIPANTS FOR THAT TYPE OF 5414 02:53:19,160 --> 02:53:23,240 APPROACH. 5415 02:53:23,240 --> 02:53:25,400 SO THERE WERE SIX THEMES THAT 5416 02:53:25,400 --> 02:53:28,880 EMERGED FROM THIS QUALITATIVE 5417 02:53:28,880 --> 02:53:29,320 SURVEY. 5418 02:53:29,320 --> 02:53:30,400 I'M NOT GOING TO GO INTO EACH 5419 02:53:30,400 --> 02:53:31,600 ONE OF THEM BUT I WANT TO 5420 02:53:31,600 --> 02:53:33,080 HIGHLIGHT A FEW BECAUSE THEY'RE 5421 02:53:33,080 --> 02:53:33,920 VERY RELEVANT TO SOME OF OUR 5422 02:53:33,920 --> 02:53:39,600 DISCUSSION THAT HAPPENED TODAY. 5423 02:53:39,600 --> 02:53:41,600 THE FIRST IS ABOUT TIMING, WHEN 5424 02:53:41,600 --> 02:53:45,200 SHOULD WE RETURN THE RESULTS. 5425 02:53:45,200 --> 02:53:46,400 YOU BROUGHT UP PREGNANT WOMEN. 5426 02:53:46,400 --> 02:53:49,480 SO IN THIS GROUP, PREGNANT WOMEN 5427 02:53:49,480 --> 02:53:50,600 THAT ANSWERS THIS QUESTION ABOUT 5428 02:53:50,600 --> 02:53:51,760 TIMING, THEY SPECIFICALLY LEAN 5429 02:53:51,760 --> 02:53:52,880 TOWARDS -- IT WAS BASED UPON 5430 02:53:52,880 --> 02:53:54,400 RESULT TYPE AND FUTURE CHILD 5431 02:53:54,400 --> 02:53:55,760 BEARING DECISIONS. 5432 02:53:55,760 --> 02:53:56,960 SO WOMEN SAID IF I WAS GOING TO 5433 02:53:56,960 --> 02:53:58,480 HAVE MORE CHILDREN, I WOULD LIKE 5434 02:53:58,480 --> 02:54:00,640 TO KNOW THIS. 5435 02:54:00,640 --> 02:54:01,880 IRRESPECTIVE OF WHEN THIS WAS 5436 02:54:01,880 --> 02:54:02,200 RETURNED. 5437 02:54:02,200 --> 02:54:03,600 IF I WAS NOT HAVING MORE 5438 02:54:03,600 --> 02:54:04,800 CHILDREN, I PROBABLY WOULD NOT 5439 02:54:04,800 --> 02:54:09,800 CARE AS MUCH. 5440 02:54:09,800 --> 02:54:10,200 DETERMINING VALUE. 5441 02:54:10,200 --> 02:54:12,080 SO THIS WAS THE QUESTION WE 5442 02:54:12,080 --> 02:54:15,480 ASKED THEM, HOW DO YOU MAKE 5443 02:54:15,480 --> 02:54:17,120 DECISIONS ABOUT PERSONAL VALUE? 5444 02:54:17,120 --> 02:54:19,120 AND THIS WAS A VERY INTERESTING 5445 02:54:19,120 --> 02:54:19,760 INTERACTION. 5446 02:54:19,760 --> 02:54:23,920 A LOT OF THEM SPOKE ABOUT HOW 5447 02:54:23,920 --> 02:54:25,120 THEY WOULD GO TO THEIR FRIENDS 5448 02:54:25,120 --> 02:54:26,760 OR FAMILY TO DECIDE IF THEY HAD 5449 02:54:26,760 --> 02:54:29,960 A SIMILAR EXPERIENCE, SO THAT 5450 02:54:29,960 --> 02:54:31,600 THEY COULD MAYBE MAKE A CHOICE 5451 02:54:31,600 --> 02:54:32,480 BASED ON WHAT THEY LEARNED. 5452 02:54:32,480 --> 02:54:33,880 A FEW PARTICIPANTS ALSO POINTED 5453 02:54:33,880 --> 02:54:36,520 TO THE RESEARCHER AS BEING THE 5454 02:54:36,520 --> 02:54:37,400 EXPERT, AND SAID THEY WOULD LIKE 5455 02:54:37,400 --> 02:54:41,120 MORE DIALOGUE IN THAT -- AND 5456 02:54:41,120 --> 02:54:42,440 CONVERSATION IN THAT PROCESS, 5457 02:54:42,440 --> 02:54:43,440 BECAUSE THEY DON'T KNOW WHAT 5458 02:54:43,440 --> 02:54:46,640 THEY DON'T KNOW, AND WOULD 5459 02:54:46,640 --> 02:54:47,680 APPRECIATE A MORE OPEN DIALOGUE 5460 02:54:47,680 --> 02:54:49,120 SAYING THIS IS WHAT WE THINK, 5461 02:54:49,120 --> 02:54:50,360 WHAT DO YOU THINK. 5462 02:54:50,360 --> 02:54:51,680 SO I THINK -- AND AS OPPOSED TO 5463 02:54:51,680 --> 02:54:54,960 WHAT I WENT IN THINKING IS THAT 5464 02:54:54,960 --> 02:54:57,720 THEY WOULD WANT TO MAKE ALL THE 5465 02:54:57,720 --> 02:54:58,720 DECISIONS, I THINK IT WAS A 5466 02:54:58,720 --> 02:55:00,000 LITTLE DIFFERENT OUTCOME WHERE 5467 02:55:00,000 --> 02:55:01,680 THEY SAW MORE ENGAGEMENT FROM 5468 02:55:01,680 --> 02:55:03,520 THE RESEARCHER. 5469 02:55:03,520 --> 02:55:04,160 I THINK THAT'S SOMETHING FOR US 5470 02:55:04,160 --> 02:55:08,400 TO KEEP IN MIND AS WE THINK 5471 02:55:08,400 --> 02:55:10,240 ABOUT RESPONDING TO QUESTIONS 5472 02:55:10,240 --> 02:55:11,360 REGARDING UNCERTAINTY OF RESULT 5473 02:55:11,360 --> 02:55:13,080 OR THE PROCESS OF RETURNING THE 5474 02:55:13,080 --> 02:55:20,760 RESULTS TO THEM. 5475 02:55:20,760 --> 02:55:23,280 THEN THE THIRD ONE WAS 5476 02:55:23,280 --> 02:55:23,880 PARTICIPANT MOTIVATIONS. 5477 02:55:23,880 --> 02:55:25,080 I THINK JEFF BROUGHT THIS UP 5478 02:55:25,080 --> 02:55:25,760 EARLIER. 5479 02:55:25,760 --> 02:55:26,920 MANY PARTICIPANTS JUST 5480 02:55:26,920 --> 02:55:28,600 PARTICIPATED BECAUSE THEY WANTED 5481 02:55:28,600 --> 02:55:30,120 TO DO GREATER GOOD. 5482 02:55:30,120 --> 02:55:33,560 AND SO IT'S NO EXPECTATION OF 5483 02:55:33,560 --> 02:55:35,080 RECEIVING RESULTS, THEY EVEN 5484 02:55:35,080 --> 02:55:36,080 SAID, WELL, I DIDN'T KNOW THAT 5485 02:55:36,080 --> 02:55:36,960 WAS AN OPTION. 5486 02:55:36,960 --> 02:55:39,000 AND I REALLY DON'T THINK I WOULD 5487 02:55:39,000 --> 02:55:41,400 WANT IT. 5488 02:55:41,400 --> 02:55:42,960 SO WHILE MANY PEOPLE WANT IT, 5489 02:55:42,960 --> 02:55:46,160 SOME MAY NOT, AND SO IT GOES 5490 02:55:46,160 --> 02:55:47,000 BACK TO PROVIDING THEM THE 5491 02:55:47,000 --> 02:55:49,080 CHOICE IN THE INFORMED CONSENT 5492 02:55:49,080 --> 02:55:50,440 AND ASKING THEM HOW THEY WOULD 5493 02:55:50,440 --> 02:55:52,960 WANT IT DONE. 5494 02:55:52,960 --> 02:55:55,120 SO THE MAIN TAKEAWAYS FROM THE 5495 02:55:55,120 --> 02:55:57,320 WORK THAT WE DID, AND AGAIN 5496 02:55:57,320 --> 02:55:58,920 KEEPING IN MIND THAT IT 5497 02:55:58,920 --> 02:56:02,760 REPRESENTS ONE COHORT OF ECHO 5498 02:56:02,760 --> 02:56:04,760 AND IT SPEAKS TO SORT OF THE 5499 02:56:04,760 --> 02:56:05,880 OPINIONS OF A CERTAIN GEOGRAPHIC 5500 02:56:05,880 --> 02:56:06,760 GROUP, THAT THE PARTICIPANTS IN 5501 02:56:06,760 --> 02:56:10,160 THIS STUDY ATTRIBUTED HIGHER 5502 02:56:10,160 --> 02:56:11,360 VALUE TO RESULTS THAT ALLOWED 5503 02:56:11,360 --> 02:56:13,000 FOR MEANINGFUL COMPARISONS. 5504 02:56:13,000 --> 02:56:15,320 LOWER VALUE WAS ATTRIBUTED TO 5505 02:56:15,320 --> 02:56:16,480 RESULTS OF UNKNOWN CERTAINTY. 5506 02:56:16,480 --> 02:56:19,600 THE VALUE OF RESULTS WAS INS 5507 02:56:19,600 --> 02:56:20,880 INFLUENCED BY TIMING OF RETURN, 5508 02:56:20,880 --> 02:56:23,400 PARTICULARLY IN RELATION TO 5509 02:56:23,400 --> 02:56:24,040 PREGNANT PEOPLE, AND 5510 02:56:24,040 --> 02:56:25,480 PARTICIPANTS ASKED FOR MORE 5511 02:56:25,480 --> 02:56:26,840 RESEARCHER ENGAGEMENT TO HELP 5512 02:56:26,840 --> 02:56:28,040 MAKE DECISIONS REGARDING THE 5513 02:56:28,040 --> 02:56:30,280 VALUE OF INDIVIDUAL RESEARCH 5514 02:56:30,280 --> 02:56:30,760 RESULTS. 5515 02:56:30,760 --> 02:56:33,320 SO FUTURE DIRECTION. 5516 02:56:33,320 --> 02:56:37,040 YOU KNOW ANY GOOD RESEARCH WILL 5517 02:56:37,040 --> 02:56:38,320 LEAD TO NEW QUESTIONS OTHERWISE 5518 02:56:38,320 --> 02:56:40,520 YOU HAVEN'T DONE YOUR JOB. 5519 02:56:40,520 --> 02:56:41,600 SO THERE'S LOTS OF DIRECTIONS 5520 02:56:41,600 --> 02:56:42,040 THIS COULD GO. 5521 02:56:42,040 --> 02:56:44,360 ONE OF THE THINGS IS DEFINITELY 5522 02:56:44,360 --> 02:56:46,360 LOOKING AT EXPLORATION OF 5523 02:56:46,360 --> 02:56:47,760 PARTICIPANT PERSPECTIVES FROM 5524 02:56:47,760 --> 02:56:48,160 DIFFERENT GROUPS. 5525 02:56:48,160 --> 02:56:50,080 I THINK WE DON'T KNOW AS MUCH AS 5526 02:56:50,080 --> 02:56:52,160 WE SHOULD WITH VARIOUS GROUPS. 5527 02:56:52,160 --> 02:56:54,080 AND THEN THE OTHER GROUP, THE 5528 02:56:54,080 --> 02:56:55,440 MAJOR STAKEHOLDER IN THIS 5529 02:56:55,440 --> 02:56:57,080 PROCESS IS THE PROVIDERS. 5530 02:56:57,080 --> 02:57:01,160 HOW DO THEY FEEL ABOUT RECEIVING 5531 02:57:01,160 --> 02:57:01,840 PARTICIPANTS GETTING THESE BACK 5532 02:57:01,840 --> 02:57:02,720 BECAUSE ULTIMATELY THEY ARE 5533 02:57:02,720 --> 02:57:03,920 GOING TO BE THE ONES THAT MAY 5534 02:57:03,920 --> 02:57:06,120 HAVE TO ANSWER SOME OF THESE 5535 02:57:06,120 --> 02:57:06,560 QUESTIONS. 5536 02:57:06,560 --> 02:57:08,000 HOW DO THEY FEEL ABOUT THEIR 5537 02:57:08,000 --> 02:57:11,360 KNOWLEDGE AND COMFORT WITH 5538 02:57:11,360 --> 02:57:12,480 TOPICS SUCH AS ENVIRONMENTAL 5539 02:57:12,480 --> 02:57:13,960 CHEMICALS AND SO FORTH, AND WHAT 5540 02:57:13,960 --> 02:57:15,440 DO WE NEED TO DO TO HELP THEM 5541 02:57:15,440 --> 02:57:19,800 BRING ALONG IN THIS PROCESS? 5542 02:57:19,800 --> 02:57:21,800 NEXT SLIDE, AND THAT'S THE LAST 5543 02:57:21,800 --> 02:57:21,960 ONE. 5544 02:57:21,960 --> 02:57:31,240 THANKS TO ECHO FOR THE FUNDING. 5545 02:57:31,240 --> 02:57:33,880 ARE WE TAKING QUESTIONS NOW? 5546 02:57:33,880 --> 02:57:34,880 WE ARE? 5547 02:57:34,880 --> 02:57:36,120 OKAY. 5548 02:57:36,120 --> 02:57:39,160 >>WE CAN TAKE QUESTIONS THE 5549 02:57:39,160 --> 02:57:41,760 NEXT TIME. 5550 02:57:41,760 --> 02:57:43,440 YES. 5551 02:57:43,440 --> 02:57:46,160 >>THANKS, JYOTI, THAT WAS 5552 02:57:46,160 --> 02:57:46,360 GREAT. 5553 02:57:46,360 --> 02:57:49,000 I'M CURIOUS ABOUT IN TERMS OF 5554 02:57:49,000 --> 02:57:51,880 EXPLORING PERSPECTIVES ACROSS 5555 02:57:51,880 --> 02:57:52,400 GROUPS. 5556 02:57:52,400 --> 02:57:54,080 ON YOUR LAST SLIDE. 5557 02:57:54,080 --> 02:57:56,600 WHAT KINDS OF THINGS WOULD BE 5558 02:57:56,600 --> 02:57:57,800 ASK IN THE PROCESS OF DOING 5559 02:57:57,800 --> 02:57:58,240 THAT? 5560 02:57:58,240 --> 02:58:01,040 WHAT DO YOU NEED TO REALLY GET 5561 02:58:01,040 --> 02:58:02,800 TO THE BOTTOM OF WHEN YOU'RE 5562 02:58:02,800 --> 02:58:04,960 LOOKING INTO THAT SORT OF THING? 5563 02:58:04,960 --> 02:58:05,360 >>YES. 5564 02:58:05,360 --> 02:58:07,880 SO I WOULD -- I THINK ONE OF THE 5565 02:58:07,880 --> 02:58:11,720 THINGS WE ALLUDED TO EARLIER IS 5566 02:58:11,720 --> 02:58:13,520 HOW THEY WOULD WANT IT RETURNED, 5567 02:58:13,520 --> 02:58:16,480 BECAUSE THERE MIGHT BE 5568 02:58:16,480 --> 02:58:19,320 DIFFERENCES IN CULTURAL WAYS OR 5569 02:58:19,320 --> 02:58:20,800 OTHER THINGS ON HOW THEY WOULD 5570 02:58:20,800 --> 02:58:22,960 WANT TO BE RETURNED. 5571 02:58:22,960 --> 02:58:31,920 I THINK EVEN IN TERMS OF 5572 02:58:31,920 --> 02:58:32,560 DIFFERENCES LOOKING AT WHETHER 5573 02:58:32,560 --> 02:58:34,520 OR NOT THEY WOULD WANT MORE 5574 02:58:34,520 --> 02:58:36,240 IN-PERSON SORT OF RETURN VERSUS 5575 02:58:36,240 --> 02:58:37,640 TECHNOLOGY, AND THAT A LOT OF 5576 02:58:37,640 --> 02:58:39,600 TIMES DEPENDS ON THE 5577 02:58:39,600 --> 02:58:40,160 GEOGRAPHICAL LOCATIONS. 5578 02:58:40,160 --> 02:58:42,280 I KNOW THAT MANY PARTICIPANTS IN 5579 02:58:42,280 --> 02:58:45,520 THE GROUP RESPONDED ABOUT HOW 5580 02:58:45,520 --> 02:58:47,840 THEY WOULD BE FINE HAVING A 5581 02:58:47,840 --> 02:58:49,600 DATABASE AND GOING IN. 5582 02:58:49,600 --> 02:58:51,360 WHILE SOMEBODY ELSE SAYS I WOULD 5583 02:58:51,360 --> 02:58:52,240 REALLY LIKE A PHONE CALL. 5584 02:58:52,240 --> 02:58:55,440 SO I THINK THAT DIFFERS ACROSS 5585 02:58:55,440 --> 02:59:01,240 PARTICIPANTS' GROUPS TOO. 5586 02:59:01,240 --> 02:59:03,000 >>YES, MATT. 5587 02:59:03,000 --> 02:59:04,960 >>JYOTI, THANKS A LOT. 5588 02:59:04,960 --> 02:59:06,440 THAT'S GREAT WORK. 5589 02:59:06,440 --> 02:59:07,080 IT'S A LOT OF WORK AND 5590 02:59:07,080 --> 02:59:07,960 CONGRATULATIONS ON YOUR 5591 02:59:07,960 --> 02:59:08,720 DOCTORATE. 5592 02:59:08,720 --> 02:59:09,240 THAT'S FANTASTIC. 5593 02:59:09,240 --> 02:59:09,600 >>THANK YOU. 5594 02:59:09,600 --> 02:59:11,240 >>SO ONE OF YOUR AIMS YOU 5595 02:59:11,240 --> 02:59:13,880 STARTED OUT WAS TO COMPARE YOUR 5596 02:59:13,880 --> 02:59:15,520 WHITE PARTICIPANTS WITH YOUR 5597 02:59:15,520 --> 02:59:18,080 AMERICAN INDIAN PARTICIPANTS. 5598 02:59:18,080 --> 02:59:19,400 SO I'M WONDERING IN YOUR 5599 02:59:19,400 --> 02:59:21,120 QUANTITATIVE OR YOUR QUALITATIVE 5600 02:59:21,120 --> 02:59:22,480 WORK, DID YOU FIND DIFFERENCES, 5601 02:59:22,480 --> 02:59:23,640 AND IF SO, WHAT? 5602 02:59:23,640 --> 02:59:24,920 >>YES, GREAT QUESTION. 5603 02:59:24,920 --> 02:59:27,840 I WAS TRYING TO CONDENSE, LIKE, 5604 02:59:27,840 --> 02:59:29,160 FOUR YEARS OF WORK INTO 15 5605 02:59:29,160 --> 02:59:31,280 MINUTES, SO I DID NOT HAVE THAT 5606 02:59:31,280 --> 02:59:31,800 UP. 5607 02:59:31,800 --> 02:59:34,640 WE ACTUALLY IN THE QUANTITATIVE 5608 02:59:34,640 --> 02:59:36,600 SERVICE, WE DID NOT FIND 5609 02:59:36,600 --> 02:59:39,080 SIGNIFICANT DIFFERENCES. 5610 02:59:39,080 --> 02:59:42,800 BETWEEN AMERICAN INDIAN 5611 02:59:42,800 --> 02:59:43,640 PARTICIPANTS AND THE WHITE 5612 02:59:43,640 --> 02:59:44,000 PARTICIPANTS. 5613 02:59:44,000 --> 02:59:45,440 IN THE QUALITATIVE, 5614 02:59:45,440 --> 02:59:47,280 UNFORTUNATELY WE DID NOT HAVE 5615 02:59:47,280 --> 02:59:48,480 ENOUGH IN THE SAMPLE, AND SO I 5616 02:59:48,480 --> 02:59:49,600 THINK WE'LL HAVE TO CONTINUE TO 5617 02:59:49,600 --> 02:59:56,080 EXPLORE THAT. 5618 02:59:56,080 --> 02:59:57,000 WHICH IS VERY INTERESTING, 5619 02:59:57,000 --> 02:59:58,600 BECAUSE I ACTUALLY WENT IN WITH 5620 02:59:58,600 --> 03:00:02,400 THE HYPOTHESIS THAT AMERICAN 5621 03:00:02,400 --> 03:00:03,560 INDIAN PARTICIPANTS WOULD 5622 03:00:03,560 --> 03:00:05,520 PROBABLY HAVE A HIGHER PERCEIVED 5623 03:00:05,520 --> 03:00:08,040 VALUE FOR RESULTS IRRESPECTIVE 5624 03:00:08,040 --> 03:00:09,440 OF RESULT TYPE, GIVEN THE 5625 03:00:09,440 --> 03:00:11,120 NOTIONS OF RESPECT AND 5626 03:00:11,120 --> 03:00:15,400 RECIPROCITY IN THE CULTURE. 5627 03:00:15,400 --> 03:00:17,200 SO THAT WAS WHAT I WAS 5628 03:00:17,200 --> 03:00:18,040 HYPOTHESIZING SO IT WAS NOT THE 5629 03:00:18,040 --> 03:00:19,840 CASE. 5630 03:00:19,840 --> 03:00:23,480 >>JOHNNYE? 5631 03:00:23,480 --> 03:00:26,160 >>NICE WORK, JYOTI. 5632 03:00:26,160 --> 03:00:28,920 AND I ALSO LIKE THAT YOU ENDED 5633 03:00:28,920 --> 03:00:31,120 WITH THE QUESTION OF HOW TO 5634 03:00:31,120 --> 03:00:35,160 BRING PROVIDERS ALONG, BECAUSE 5635 03:00:35,160 --> 03:00:36,240 THAT IS A CONFLICT THAT WE'VE 5636 03:00:36,240 --> 03:00:37,360 SEEN A LOT WHERE OUR 5637 03:00:37,360 --> 03:00:38,680 PARTICIPANTS REALLY WANT RESULTS 5638 03:00:38,680 --> 03:00:40,240 TO GO INTO THEIR RECORD, SO IT 5639 03:00:40,240 --> 03:00:43,400 CAN BE CONSIDERED. 5640 03:00:43,400 --> 03:00:46,040 AND CLINICIANS, WHEN THEY DON'T 5641 03:00:46,040 --> 03:00:47,280 KNOW WHAT TO DO WITH SOMETHING, 5642 03:00:47,280 --> 03:00:48,120 THEY'RE VERY NERVOUS ABOUT IT 5643 03:00:48,120 --> 03:00:48,800 BEING IN THE RECORD. 5644 03:00:48,800 --> 03:00:51,000 SO WONDERED IF YOU HAD SOME 5645 03:00:51,000 --> 03:00:52,320 IDEAS ABOUT A STRATEGY TO 5646 03:00:52,320 --> 03:00:55,480 IMPLEMENT TO START MAKING THAT 5647 03:00:55,480 --> 03:00:57,480 CHANGE? 5648 03:00:57,480 --> 03:00:59,840 >>CAN I LEAVE THAT UP TO THE 5649 03:00:59,840 --> 03:01:07,360 DISCUSSION SECTION? 5650 03:01:07,360 --> 03:01:08,920 I DON'T KNOW AS OF NOW. 5651 03:01:08,920 --> 03:01:10,320 I'M GOING TO HAVE TO THINK ABOUT 5652 03:01:10,320 --> 03:01:10,880 THAT. 5653 03:01:10,880 --> 03:01:13,120 YEAH, WE CAN TALK. 5654 03:01:13,120 --> 03:01:15,840 >>I HAVE A QUESTION. 5655 03:01:15,840 --> 03:01:17,240 >>REALLY INTERESTING WORK. 5656 03:01:17,240 --> 03:01:19,040 I WAS WONDERING IF YOU ASKED 5657 03:01:19,040 --> 03:01:20,440 WHETHER THERE WAS A PREFERENCE 5658 03:01:20,440 --> 03:01:22,000 FOR OPTING IN TO GETTING 5659 03:01:22,000 --> 03:01:26,640 RESULTS, LIKE DURING THE CONCEPT 5660 03:01:26,640 --> 03:01:27,520 PROCESS, OR THAT BEING THE 5661 03:01:27,520 --> 03:01:28,920 DEFAULT AND PEOPLE WOULD OPT OUT 5662 03:01:28,920 --> 03:01:30,640 IF THEY DID NOT GET RESULTS? 5663 03:01:30,640 --> 03:01:32,600 >>I DID NOT ASK THAT QUESTION. 5664 03:01:32,600 --> 03:01:34,920 BUT DURING THE QUALITATIVE 5665 03:01:34,920 --> 03:01:38,440 INTERVIEW PROCESS, I THINK THAT 5666 03:01:38,440 --> 03:01:40,080 THAT CAME UP ONCE OR TWICE WHEN 5667 03:01:40,080 --> 03:01:41,080 PEOPLE SAID, OF COURSE I WOULD 5668 03:01:41,080 --> 03:01:44,360 HAVE A CHOICE, RIGHT? 5669 03:01:44,360 --> 03:01:47,000 SO IT WAS AN ASSUMED ASSUMPTION 5670 03:01:47,000 --> 03:01:47,640 ON THEIR PART. 5671 03:01:47,640 --> 03:01:49,160 THE OTHER THING THAT CAME UP IS 5672 03:01:49,160 --> 03:01:52,920 A LOT OF PEOPLE WERE INTERESTED 5673 03:01:52,920 --> 03:01:57,000 ABOUT LEARNING CHANGES TO RESULT 5674 03:01:57,000 --> 03:01:58,520 OR PROGRESS ALONG THE WAY, SO IF 5675 03:01:58,520 --> 03:01:59,600 I SAID YES TO SOMETHING, I WOULD 5676 03:01:59,600 --> 03:02:01,480 WANT TO KNOW IF YOU FOUND 5677 03:02:01,480 --> 03:02:02,440 SOMETHING DIFFERENTLY SINCE WHEN 5678 03:02:02,440 --> 03:02:05,080 I SAID YES, AND SO THAT WAS A 5679 03:02:05,080 --> 03:02:08,280 BIG PART ABOUT KEEP ME INFORMED 5680 03:02:08,280 --> 03:02:10,600 ABOUT HOW THINGS ARE GOING ALONG 5681 03:02:10,600 --> 03:02:12,280 THE WAY SO THAT I CAN MAKE A 5682 03:02:12,280 --> 03:02:13,240 BETTER DECISION WHEN IT COMES 5683 03:02:13,240 --> 03:02:15,240 TIME TO GET THE RESULT. 5684 03:02:15,240 --> 03:02:16,240 SO THAT WAS AN INTERESTING POINT 5685 03:02:16,240 --> 03:02:22,800 AS WELL. 5686 03:02:22,800 --> 03:02:28,640 >>ANY OTHER QUESTIONS? 5687 03:02:28,640 --> 03:02:30,960 THANK YOU SO MUCH FOR A 5688 03:02:30,960 --> 03:02:32,080 WONDERFUL PRESENTATION. 5689 03:02:32,080 --> 03:02:34,840 >>THANK YOU. 5690 03:02:34,840 --> 03:02:36,240 >>NEXT PRESENTING ON PARENT 5691 03:02:36,240 --> 03:02:39,520 VIEWS ON CHEMICAL EXPOSURE 5692 03:02:39,520 --> 03:02:41,840 RESULTS WILL BE JULIE HERBSTMAN 5693 03:02:41,840 --> 03:02:52,280 FROM COLUMBIA UNIVERSITY. 5694 03:03:06,240 --> 03:03:06,880 >>THANK YOU. 5695 03:03:06,880 --> 03:03:08,960 IT'S SO NICE TO FOLLOW JYOTI, 5696 03:03:08,960 --> 03:03:11,360 WHO I'VE HAD THE REAL PLEASURE 5697 03:03:11,360 --> 03:03:13,280 OF WORKING WITH IN THE ECHO 5698 03:03:13,280 --> 03:03:14,840 CONSORTIUM, AND ALSO AS PART OF 5699 03:03:14,840 --> 03:03:16,120 A SUPPLEMENT THAT I DIDN'T HAVE 5700 03:03:16,120 --> 03:03:19,560 A CHANCE TO MENTION EARLIER THAT 5701 03:03:19,560 --> 03:03:20,640 WE'VE GOTTEN TO LOOK AT. 5702 03:03:20,640 --> 03:03:25,400 IT'S CALLED NOT WHETHER BUT HOW, 5703 03:03:25,400 --> 03:03:27,000 LOOKING AT THE BIOETHICS OF 5704 03:03:27,000 --> 03:03:27,800 REPORT-BACK. 5705 03:03:27,800 --> 03:03:29,000 SO I'VE TAPPED A COUPLE OF YOU 5706 03:03:29,000 --> 03:03:29,320 IN THIS ROOM. 5707 03:03:29,320 --> 03:03:30,640 THANK YOU FOR TAKING THE TIME. 5708 03:03:30,640 --> 03:03:32,000 I APPRECIATE YOUR INPUT. 5709 03:03:32,000 --> 03:03:32,840 AND ONE OF THE THINGS WE'VE 5710 03:03:32,840 --> 03:03:34,920 LEARNED AS PART OF THAT PANEL IS 5711 03:03:34,920 --> 03:03:36,400 THAT IT'S KIND OF HARD TO TALK 5712 03:03:36,400 --> 03:03:40,120 ABOUT THESE THINGS IN THE 5713 03:03:40,120 --> 03:03:41,360 ABSTRACT, SO WHAT I'M HOPING TO 5714 03:03:41,360 --> 03:03:45,640 DO TODAY IS PROVIDE YOU WITH ONE 5715 03:03:45,640 --> 03:03:47,080 CASE STUDY BASICALLY FROM OUR 5716 03:03:47,080 --> 03:03:48,720 OWN WORK WHERE WE IMPLEMENTED A 5717 03:03:48,720 --> 03:03:50,520 REPORT-BACK IN THE COHORT THAT I 5718 03:03:50,520 --> 03:03:51,000 WORKED WITH. 5719 03:03:51,000 --> 03:03:51,920 SO I'LL TELL YOU A LITTLE BIT 5720 03:03:51,920 --> 03:03:53,760 ABOUT THAT, BUT THE TITLE OF MY 5721 03:03:53,760 --> 03:03:55,440 TALK IS "PARENT VIEWS ON 5722 03:03:55,440 --> 03:03:56,880 CHEMICAL EXPOSURE RESULTS," AND 5723 03:03:56,880 --> 03:03:59,040 I'M SO HONORED, AS OTHERS HAVE 5724 03:03:59,040 --> 03:04:00,840 SAID, TO BE IN THE ROOM WITH 5725 03:04:00,840 --> 03:04:02,480 REAL LIVE STUDY PARTICIPANTS WHO 5726 03:04:02,480 --> 03:04:03,680 CAN TELL YOU THEMSELVES WHAT 5727 03:04:03,680 --> 03:04:06,400 THEY THINK ABOUT THEIR VIEWS ON 5728 03:04:06,400 --> 03:04:07,880 CHEMICAL EXPOSURE RESULTS. 5729 03:04:07,880 --> 03:04:09,120 SO I'M GOING TO FLIP THIS A 5730 03:04:09,120 --> 03:04:13,280 LITTLE BIT AND TELL YOU IN THIS 5731 03:04:13,280 --> 03:04:14,320 VERY INTIMATE SETTING OF 30 5732 03:04:14,320 --> 03:04:16,680 PEOPLE IN THE ROOM AND 200 OR SO 5733 03:04:16,680 --> 03:04:18,600 ONLINE ABOUT MY OWN INSECURITIES 5734 03:04:18,600 --> 03:04:20,560 AS A RESEARCHER, TRYING TO 5735 03:04:20,560 --> 03:04:23,200 IMPLEMENT A REPORTBACK WITHOUT 5736 03:04:23,200 --> 03:04:24,960 REALLY HAVING BEEN TRAINED TO DO 5737 03:04:24,960 --> 03:04:26,080 THIS. 5738 03:04:26,080 --> 03:04:27,080 SO I'M HOPING TO SHARE THAT 5739 03:04:27,080 --> 03:04:30,960 PERSPECTIVE WITH YOU. 5740 03:04:30,960 --> 03:04:32,840 SO I WANT TO JUST GIVE YOU SOME 5741 03:04:32,840 --> 03:04:34,400 FRAMING A LITTLE BIT ABOUT THE 5742 03:04:34,400 --> 03:04:37,480 PLACE THAT I WORK, SO I HAVE 5743 03:04:37,480 --> 03:04:39,800 BEEN AT THE COLUMBIA CENTER FOR 5744 03:04:39,800 --> 03:04:40,800 CHILDREN'S ENVIRONMENTAL HEALTH 5745 03:04:40,800 --> 03:04:41,920 SINCE 2006, BEEN DIRECTING THE 5746 03:04:41,920 --> 03:04:43,320 CENTER FOR THE PAST FOUR YEARS 5747 03:04:43,320 --> 03:04:45,440 OR SO, AND THE CENTER HAS BEEN 5748 03:04:45,440 --> 03:04:46,960 AROUND FOR 25 YEARS, AND SO 5749 03:04:46,960 --> 03:04:48,480 SINCE 1998, WE'VE BEEN TRYING TO 5750 03:04:48,480 --> 03:04:50,280 UNDERSTAND HOW PRENATAL 5751 03:04:50,280 --> 03:04:51,400 ENVIRONMENTAL EXPOSURES IB 5752 03:04:51,400 --> 03:04:54,440 FLEINFLUENCE A VARIETY OF 5753 03:04:54,440 --> 03:04:55,560 CHILDREN'S HEALTH OUTCOMES. 5754 03:04:55,560 --> 03:04:57,440 AND SO I ALSO WANT TO ORIENT YOU 5755 03:04:57,440 --> 03:05:00,480 TO WHERE I'M WORKING. 5756 03:05:00,480 --> 03:05:03,840 SO WE'RE BASED IN NORTHERN 5757 03:05:03,840 --> 03:05:05,560 MANHATTAN, IN THE NORTHERN TIP 5758 03:05:05,560 --> 03:05:06,840 OF MANHATTAN ISLAND, NEW YORK 5759 03:05:06,840 --> 03:05:07,200 CITY. 5760 03:05:07,200 --> 03:05:10,280 IT'S A POPULATION BASED AROUND 5761 03:05:10,280 --> 03:05:10,840 THE HOSPITAL WHERE WE ARE. 5762 03:05:10,840 --> 03:05:12,480 I DON'T KNOW IF YOU CAN SEE MY 5763 03:05:12,480 --> 03:05:14,600 POINTER OR IF IT REALLY MATTERS, 5764 03:05:14,600 --> 03:05:15,600 BUT BASICALLY THE POPULATION 5765 03:05:15,600 --> 03:05:18,200 COMES FROM WASHINGTON HEIGHTS, 5766 03:05:18,200 --> 03:05:19,720 HARLEM AND THE SOUTH BRONX. 5767 03:05:19,720 --> 03:05:21,480 AND SO WE HAVE THREE 5768 03:05:21,480 --> 03:05:22,480 ADMINISTRATIVE COHORTS, BUT YOU 5769 03:05:22,480 --> 03:05:23,920 MIGHT THINK ABOUT THEM AS ONE 5770 03:05:23,920 --> 03:05:25,360 REALLY LONG CONTINUOUS COHORT 5771 03:05:25,360 --> 03:05:27,080 THAT'S BEEN GOING ON FOR 25 5772 03:05:27,080 --> 03:05:28,680 YEARS, AND SO THE OLDEST 5773 03:05:28,680 --> 03:05:30,320 PARTICIPANTS ARE 25, AND WE'RE 5774 03:05:30,320 --> 03:05:31,640 STILL RECRUITING PREGNANT PEOPLE 5775 03:05:31,640 --> 03:05:34,520 AS WELL. 5776 03:05:34,520 --> 03:05:36,080 THE COHORTS, THE DEMOGRAPHICS OF 5777 03:05:36,080 --> 03:05:39,120 THE COHORTS ARE PRIMARILY 5778 03:05:39,120 --> 03:05:41,880 SELF-IDENTIFIED AS BLACK AND 5779 03:05:41,880 --> 03:05:44,520 HISPANIC, MAINLY DOMINICAN. 5780 03:05:44,520 --> 03:05:46,240 AND ABOUT A THIRD OF OUR 5781 03:05:46,240 --> 03:05:47,040 PARTICIPANTS HAVEN'T COMPLETED A 5782 03:05:47,040 --> 03:05:48,240 HIGH SCHOOL EDUCATION. 5783 03:05:48,240 --> 03:05:49,240 AND THAT BECOMES REALLY 5784 03:05:49,240 --> 03:05:51,560 IMPORTANT WHEN WE START THINKING 5785 03:05:51,560 --> 03:05:52,600 ABOUT HOW WE COMMUNICATE 5786 03:05:52,600 --> 03:05:55,160 RESULTS. 5787 03:05:55,160 --> 03:05:56,960 SO THE CENTRAL FOCUS OF OUR WORK 5788 03:05:56,960 --> 03:05:58,720 FOR MANY, MANY YEARS HAS BEEN 5789 03:05:58,720 --> 03:06:00,240 TRYING TO UNDERSTAND HOW 5790 03:06:00,240 --> 03:06:02,680 PRENATAL EXPOSURE TO AIR 5791 03:06:02,680 --> 03:06:03,240 POLLUTION AFFECTS CHILDREN'S 5792 03:06:03,240 --> 03:06:04,760 HEALTH. 5793 03:06:04,760 --> 03:06:06,640 IN THE NEXT SLIDE, I WON'T GO 5794 03:06:06,640 --> 03:06:08,040 INTO ANY AMOUNT OF DETAIL BUT 5795 03:06:08,040 --> 03:06:09,600 THERE'S LOTS AND LOTS OF WAYS TO 5796 03:06:09,600 --> 03:06:12,560 ASSESS AIR POLLUTION GOING FROM 5797 03:06:12,560 --> 03:06:14,640 AREA MEASURES THAT TALK ABOUT 5798 03:06:14,640 --> 03:06:16,760 AIR POLLUTION HAZARDS, ALL THE 5799 03:06:16,760 --> 03:06:18,200 WAY TO SORT OF THE BIOLOGICALLY 5800 03:06:18,200 --> 03:06:19,280 EFFECTIVE DOSE OF WHAT'S GOING 5801 03:06:19,280 --> 03:06:20,480 ON IN SOMEONE'S BLOOD. 5802 03:06:20,480 --> 03:06:22,040 AND I THINK THIS HAS 5803 03:06:22,040 --> 03:06:22,760 IMPLICATIONS FOR THE 5804 03:06:22,760 --> 03:06:24,600 CONVERSATION WE HAD EARLIER 5805 03:06:24,600 --> 03:06:26,560 TODAY, WHICH REALLY, YOU KNOW, 5806 03:06:26,560 --> 03:06:27,920 THERE'S DIFFERENT RULES AND 5807 03:06:27,920 --> 03:06:29,600 REGULATIONS ABOUT HOW YOU NEED 5808 03:06:29,600 --> 03:06:31,200 TO DO THINGS, DEPENDING ON HOW 5809 03:06:31,200 --> 03:06:32,600 YOU'RE MEASURING EXPOSURE. 5810 03:06:32,600 --> 03:06:34,320 SO WHAT I'M GOING TO TALK TO YOU 5811 03:06:34,320 --> 03:06:35,600 ABOUT ACTUALLY IS EXPOSURE THAT 5812 03:06:35,600 --> 03:06:37,920 WE MEASURED USING THESE SILICONE 5813 03:06:37,920 --> 03:06:38,920 WRIST BAND SAMPLERS. 5814 03:06:38,920 --> 03:06:41,360 ON THE NEXT SLIDE, THIS IS A 5815 03:06:41,360 --> 03:06:42,560 COLLABORATION WITH RESEARCHERS 5816 03:06:42,560 --> 03:06:52,000 AT O OREGON STATE UNIVERSITY, TS 5817 03:06:52,000 --> 03:06:55,840 IS LIKE YOUR USUAL LIVESTRONG 5818 03:06:55,840 --> 03:06:57,720 BAND THEY PREPARE, BASICALLY 5819 03:06:57,720 --> 03:06:59,600 SEAL IT UP, AND AS SOON AS THEY 5820 03:06:59,600 --> 03:07:00,880 MAIL -- THEY MAIL TO US. 5821 03:07:00,880 --> 03:07:02,640 AS SOON AS WE TAKE IT OUT OF THE 5822 03:07:02,640 --> 03:07:13,160 BAG TO GIVE TO A PARTICIPANT, IT 5823 03:07:15,040 --> 03:07:19,560 STARTS -- THIS WAS DONE IN NIEHS 5824 03:07:19,560 --> 03:07:22,760 SPONSORED R21/R33 WORK. 5825 03:07:22,760 --> 03:07:23,640 IT'S IMPORTANT TO THINK ABOUT 5826 03:07:23,640 --> 03:07:24,960 THESE ISSUES OF REPORTBACK 5827 03:07:24,960 --> 03:07:25,840 BECAUSE WE BUILT IT IN. 5828 03:07:25,840 --> 03:07:27,240 AT THE VERY BEGINNING OF THE 5829 03:07:27,240 --> 03:07:28,280 STUDY, WE KNEW WE WERE GOING TO 5830 03:07:28,280 --> 03:07:30,480 DO IT, WE ALLOCATED RESOURCES TO 5831 03:07:30,480 --> 03:07:31,720 IT, BUDGETED TIME, HAD THE 5832 03:07:31,720 --> 03:07:32,000 EXPERTISE. 5833 03:07:32,000 --> 03:07:36,880 AND IN THIS STUDY, THE SILICONE 5834 03:07:36,880 --> 03:07:37,880 BANDS CAN MEASURE 1500 5835 03:07:37,880 --> 03:07:38,480 COMPOUNDS. 5836 03:07:38,480 --> 03:07:41,520 WE FOCUSED ON PAHs, COMBUSTION 5837 03:07:41,520 --> 03:07:44,840 RELATED AIR POLLUTANTS. 5838 03:07:44,840 --> 03:07:46,000 SO ONE OF THE BENEFITS OF 5839 03:07:46,000 --> 03:07:47,640 WORKING WITH THE OREGON STATE 5840 03:07:47,640 --> 03:07:51,600 GROUP IS THAT DIANA ROHLMAN, WHO 5841 03:07:51,600 --> 03:07:53,160 IS A RESEARCHER THERE, IS REALLY 5842 03:07:53,160 --> 03:07:54,240 AN EXPERT IN THIS SPACE. 5843 03:07:54,240 --> 03:07:56,040 AGAIN, I'M AN ENVIRONMENTAL 5844 03:07:56,040 --> 03:07:56,400 EPIDEMIOLOGIST. 5845 03:07:56,400 --> 03:07:57,560 I DIDN'T HAVE A LOT OF 5846 03:07:57,560 --> 03:07:58,680 CONFIDENCE THAT WE COULD DO THIS 5847 03:07:58,680 --> 03:07:59,120 REAL WELL. 5848 03:07:59,120 --> 03:08:01,240 AND SO I FEW WE WANTED TO DO IT, 5849 03:08:01,240 --> 03:08:03,280 I JUST DIDN'T -- I WASN'T SURE 5850 03:08:03,280 --> 03:08:05,640 WE -- I WASN'T SURE WE WOULD DO 5851 03:08:05,640 --> 03:08:08,160 A GOOD JOB AND ACTUALLY I WAS 5852 03:08:08,160 --> 03:08:12,120 REALLY WORE OWED TH WORRIED THAO 5853 03:08:12,120 --> 03:08:13,000 MORE HARM THAN GOOD. 5854 03:08:13,000 --> 03:08:14,120 YOU'VE HEARD THAT BALANCE OVER 5855 03:08:14,120 --> 03:08:15,160 AND OVER AGAIN THROUGH OTHER 5856 03:08:15,160 --> 03:08:15,720 SPEAKERS. 5857 03:08:15,720 --> 03:08:16,760 SO ONE OF THE THINGS WE WERE 5858 03:08:16,760 --> 03:08:17,640 ABLE TO DO IS REALLY LEVERAGE 5859 03:08:17,640 --> 03:08:18,840 WORK THAT DIANA HAD DONE IN 5860 03:08:18,840 --> 03:08:19,680 OTHER POPULATIONS. 5861 03:08:19,680 --> 03:08:24,120 SO SHE HAS WORKED WITH FOLKS IN 5862 03:08:24,120 --> 03:08:26,760 OREGON, FOLKS WHO WERE EXPOSED 5863 03:08:26,760 --> 03:08:28,600 TO WILDFIRES OUT ON THE PACIFIC 5864 03:08:28,600 --> 03:08:30,040 NORTH WEATHER, PEOPLE WHO WERE 5865 03:08:30,040 --> 03:08:31,240 EXPOSED TO HURRICANE -- ONE OF 5866 03:08:31,240 --> 03:08:34,000 THE HURRICANES IN TEXAS, 5867 03:08:34,000 --> 03:08:36,000 FRACKING IN OHIO, SO SHE HAD A 5868 03:08:36,000 --> 03:08:36,880 LOT OF EXPERIENCE DOING THIS 5869 03:08:36,880 --> 03:08:38,840 KIND OF WORK. 5870 03:08:38,840 --> 03:08:41,080 AND IN TERMS OF PAHs, WE WERE 5871 03:08:41,080 --> 03:08:43,920 ABLE TO TAKE A LOT OF THE 5872 03:08:43,920 --> 03:08:44,840 MATERIALS THAT THEY HAD 5873 03:08:44,840 --> 03:08:46,160 DEVELOPED AND ADAPT THEM, BORROW 5874 03:08:46,160 --> 03:08:47,880 SOME OF THEM AND ADAPT THEM, AND 5875 03:08:47,880 --> 03:08:49,920 THAT SHOWS SOME RT PORTABILITY 5876 03:08:49,920 --> 03:08:51,360 OF SOME -- YOU KNOW, OF THE IDEA 5877 03:08:51,360 --> 03:08:53,200 THAT THERE CAN BE CENTRALIZED 5878 03:08:53,200 --> 03:08:56,280 RESOURCES THAT ARE APPLICABLE 5879 03:08:56,280 --> 03:08:58,160 ACROSS MULTIPLE POPULATIONS. 5880 03:08:58,160 --> 03:08:59,160 ONE OF THE REALLY IMPORTANT 5881 03:08:59,160 --> 03:09:00,600 THINGS THAT WE HAD TO DO, 5882 03:09:00,600 --> 03:09:03,480 THOUGH, WAS TRANSLATE IT INTO 5883 03:09:03,480 --> 03:09:03,880 SPANISH. 5884 03:09:03,880 --> 03:09:05,760 WE HAVE A STUDY POPULATION WHERE 5885 03:09:05,760 --> 03:09:08,320 THE MAJORITY OF PEOPLE PREFER TO 5886 03:09:08,320 --> 03:09:09,200 SPEAK IN SPANISH. 5887 03:09:09,200 --> 03:09:11,160 NOT THAT THEY CAN'T SPEAK IN 5888 03:09:11,160 --> 03:09:12,960 ENGLISH, BUT THEY PREFER TO BE 5889 03:09:12,960 --> 03:09:14,880 COMMUNICATED TO IN SPANISH. 5890 03:09:14,880 --> 03:09:16,480 SO WE SPENT A LOT OF TIME 5891 03:09:16,480 --> 03:09:17,520 TRANSLATING THE MATERIALS, NOT 5892 03:09:17,520 --> 03:09:19,760 JUST INTO SPANISH, BUT INTO 5893 03:09:19,760 --> 03:09:21,440 CARIBBEAN SPANISH, WHICH IS 5894 03:09:21,440 --> 03:09:23,520 USING LANGUAGE AND CULTURE THAT 5895 03:09:23,520 --> 03:09:25,240 PEOPLE ARE FAMILIAR WITH AND 5896 03:09:25,240 --> 03:09:32,960 THAT THEY'RE GOING TO 5897 03:09:32,960 --> 03:09:33,840 UNDERSTAND. 5898 03:09:33,840 --> 03:09:35,160 SO OUR REPORTS HAVE BOTH 5899 03:09:35,160 --> 03:09:36,160 QUALITATIVE AND QUANTITATIVE 5900 03:09:36,160 --> 03:09:36,520 RESULTS. 5901 03:09:36,520 --> 03:09:37,760 THIS IS AN EXAMPLE OF THE 5902 03:09:37,760 --> 03:09:38,800 QUALITATIVE RESULTS WHERE WE 5903 03:09:38,800 --> 03:09:41,320 BASICALLY LISTED OUT OF THE 62 5904 03:09:41,320 --> 03:09:42,760 PAHs THAT WE TRIED TO MEASURE, 5905 03:09:42,760 --> 03:09:43,800 HERE'S WHAT WE FOUND IN YOUR 5906 03:09:43,800 --> 03:09:44,640 WRIST BAND. 5907 03:09:44,640 --> 03:09:50,120 AND ON THE NEXT SLIDE, THE 5908 03:09:50,120 --> 03:09:51,080 QUANTITATIVE RESULTS. 5909 03:09:51,080 --> 03:09:52,360 I HAVE TO SAY HERE, WE LEANED 5910 03:09:52,360 --> 03:09:55,320 VERY, VERY MUCH ON GUIDANCE THAT 5911 03:09:55,320 --> 03:09:58,640 WAS CREATED BY JULIA AND HER 5912 03:09:58,640 --> 03:09:59,840 TIME AT SILENT SPRING. 5913 03:09:59,840 --> 03:10:01,360 THEY PUT TOGETHER A REALLY 5914 03:10:01,360 --> 03:10:02,280 BEAUTIFUL HANDBOOK THAT TALKED 5915 03:10:02,280 --> 03:10:04,920 ABOUT HOW DO YOU CREATE A 5916 03:10:04,920 --> 03:10:06,800 TEMPLATE FOR PEOPLE TO 5917 03:10:06,800 --> 03:10:12,360 UNDERSTAND A GRAPH, FOR EXAMPLE. 5918 03:10:12,360 --> 03:10:14,000 AS THE SCIENTISTS IN THIS ROOM 5919 03:10:14,000 --> 03:10:15,880 WE'RE USED TO SEEING DATA THIS 5920 03:10:15,880 --> 03:10:17,240 WAY, BUT NORMAL PEOPLE -- MAYBE 5921 03:10:17,240 --> 03:10:20,960 THAT'S NOT THE RIGHT WORD, BUT 5922 03:10:20,960 --> 03:10:21,480 REGULAR PEOPLE ARE NOT. 5923 03:10:21,480 --> 03:10:22,640 SO WE LEANED ON THE RESOURCES 5924 03:10:22,640 --> 03:10:23,720 THEY HAD DEVELOPED TO TRY TO 5925 03:10:23,720 --> 03:10:25,720 FRAME THIS OUT TO SORT OF SAY, 5926 03:10:25,720 --> 03:10:27,560 OKAY, HERE'S HOW WE'RE GOING TO 5927 03:10:27,560 --> 03:10:28,920 PRESENT YOUR RESULTS, HERE'S THE 5928 03:10:28,920 --> 03:10:30,400 ICONS WE'RE GOING TO USE. 5929 03:10:30,400 --> 03:10:31,520 HOW DO YOU FIND YOUR RESULT IN 5930 03:10:31,520 --> 03:10:31,920 THIS STORY? 5931 03:10:31,920 --> 03:10:33,040 AND WHAT ARE ALL THESE OTHER 5932 03:10:33,040 --> 03:10:34,760 DOTS AND WHAT DO THEY MEAN AND 5933 03:10:34,760 --> 03:10:35,400 HOW DO YOU PUT THAT INTO 5934 03:10:35,400 --> 03:10:35,760 CONTEXT? 5935 03:10:35,760 --> 03:10:37,160 SO USING THOSE RESOURCES HELPED 5936 03:10:37,160 --> 03:10:39,600 US TO CREATE OUR REPORT 5937 03:10:39,600 --> 03:10:42,400 CERTAINLY. 5938 03:10:42,400 --> 03:10:43,480 THE OTHER THING WE DID WAS THAT 5939 03:10:43,480 --> 03:10:44,640 WE KNEW WE WEREN'T GOING TO BE 5940 03:10:44,640 --> 03:10:49,080 ABLE TO GIVE PEOPLE REPORTS ONE 5941 03:10:49,080 --> 03:10:50,960 BY ONE, SO WE DEVELOPED A 5942 03:10:50,960 --> 03:10:52,840 YOUTUBE VIDEO WHERE WE PUT 5943 03:10:52,840 --> 03:10:55,680 SPANISH SUBTITLES ON SO THAT 5944 03:10:55,680 --> 03:10:57,560 PEOPLE WOULD HAVE A RESOURCE. 5945 03:10:57,560 --> 03:10:59,200 IF THEY'RE AT HOME BY THEMSELVES 5946 03:10:59,200 --> 03:11:00,880 READING THIS RESULT, IF THEY GOT 5947 03:11:00,880 --> 03:11:02,280 LOST, IF THEY DIDN'T KNOW WHAT 5948 03:11:02,280 --> 03:11:04,200 TO DO, THEY COULD GO TO THE 5949 03:11:04,200 --> 03:11:05,160 VIDEO AND SORT OF TRACK THEIR 5950 03:11:05,160 --> 03:11:11,960 WAY THROUGH. 5951 03:11:11,960 --> 03:11:13,360 SO AS I SAID, WE WERE ABLE TO 5952 03:11:13,360 --> 03:11:14,440 BORROW SOME OF THE RESOURCES 5953 03:11:14,440 --> 03:11:16,080 THAT HAD BEEN DEVELOPED BY DIANA 5954 03:11:16,080 --> 03:11:18,760 AND HER CREW, SO HERE'S AN 5955 03:11:18,760 --> 03:11:19,320 EXAMPLE. 5956 03:11:19,320 --> 03:11:20,280 ONE OF THE THINGS WE LIKE TO BE 5957 03:11:20,280 --> 03:11:21,240 ABLE TO DO, AND THIS WAS 5958 03:11:21,240 --> 03:11:22,760 DISCUSSED A LITTLE BIT EARLIER 5959 03:11:22,760 --> 03:11:24,080 TOO, IS WE LIKE TO TELL PEOPLE 5960 03:11:24,080 --> 03:11:25,160 WHEN WE'RE GIVING THEM 5961 03:11:25,160 --> 03:11:26,040 INFORMATION, WHAT ARE THINGS YOU 5962 03:11:26,040 --> 03:11:28,920 CAN DO TO REDUCE YOUR EXPOSURE? 5963 03:11:28,920 --> 03:11:30,560 INDEPENDENT OF YOUR ACTUAL 5964 03:11:30,560 --> 03:11:32,200 EXPOSURE IN GENERAL, WHAT ARE 5965 03:11:32,200 --> 03:11:33,320 THINGS THAT YOU CAN DO? 5966 03:11:33,320 --> 03:11:37,840 AND SO ONE OF THE SOURCES OF PAH 5967 03:11:37,840 --> 03:11:39,360 EXPOSURE HAS BEEN CANDLE USE, SO 5968 03:11:39,360 --> 03:11:40,160 BURNING CANDLES. 5969 03:11:40,160 --> 03:11:43,840 AND THIS IS SOMETHING THAT WE 5970 03:11:43,840 --> 03:11:45,360 DIDN'T FEEL COMFORTABLE SAYING 5971 03:11:45,360 --> 03:11:46,560 DON'T BURN CANDLE, BUT THERE'S 5972 03:11:46,560 --> 03:11:48,160 WAYS THAT YOU CAN DO IT MORE 5973 03:11:48,160 --> 03:11:48,600 SAFELY. 5974 03:11:48,600 --> 03:11:50,440 SO THEY HAD DEVELOPED THIS 5975 03:11:50,440 --> 03:11:51,960 PARTICULAR RESOURCE FOR ANOTHER 5976 03:11:51,960 --> 03:11:53,560 COMMUNITY THAT WE WERE ABLE TO 5977 03:11:53,560 --> 03:11:54,760 TAKE AND SAY, HEY, IT'S RELEVANT 5978 03:11:54,760 --> 03:11:55,840 FOR US TOO. 5979 03:11:55,840 --> 03:12:01,880 AGAIN, ONCE WE TRANSLATED IT. 5980 03:12:01,880 --> 03:12:05,000 HOWEVER, THERE WERE SOME VERY 5981 03:12:05,000 --> 03:12:06,080 CONTEXTUALLY -- YOU KNOW, SOME 5982 03:12:06,080 --> 03:12:07,320 THINGS THAT REALLY DIDN'T 5983 03:12:07,320 --> 03:12:08,080 TRANSLATE VERY WELL. 5984 03:12:08,080 --> 03:12:10,200 SO THIS IS SOMETHING THAT WE 5985 03:12:10,200 --> 03:12:11,720 LEARNED IN OUR STUDY THAT A 5986 03:12:11,720 --> 03:12:15,880 MAJOR SOURCE OF PAH IS THE USE 5987 03:12:15,880 --> 03:12:25,400 OF ALCANFOR. 5988 03:12:25,400 --> 03:12:28,560 MANY PEOPLE IN OUR COMMUNITY USE 5989 03:12:28,560 --> 03:12:31,800 THESE ALCANFORS, CUBES, IN 5990 03:12:31,800 --> 03:12:33,000 DIFFERENT KINDS OF WAYS, AND WE 5991 03:12:33,000 --> 03:12:34,800 WANTED TO UNDERSTAND HOW. 5992 03:12:34,800 --> 03:12:36,080 AND ALSO BE CULTURALLY SENSITIVE 5993 03:12:36,080 --> 03:12:37,080 TO THE IDEA THAT THIS IS PART OF 5994 03:12:37,080 --> 03:12:38,320 A CULTURE AND WE SHOULDN'T COME 5995 03:12:38,320 --> 03:12:39,920 IN AND BE LIKE, NO, DON'T DO 5996 03:12:39,920 --> 03:12:40,320 THAT. 5997 03:12:40,320 --> 03:12:41,880 AND SO WE NEED TO UNDERSTAND 5998 03:12:41,880 --> 03:12:43,160 BETTER HOW PEOPLE ARE USING IT 5999 03:12:43,160 --> 03:12:47,760 SO WE CAN THINK THROUGH WITH THE 6000 03:12:47,760 --> 03:12:48,960 COMMUNITY ABOUT WHAT ARE THINGS 6001 03:12:48,960 --> 03:12:53,440 WE CAN AND SHOULD SAY. 6002 03:12:53,440 --> 03:12:54,960 SO NOW I WANT TO TELL YOU A 6003 03:12:54,960 --> 03:12:55,760 LITTLE BIT ABOUT SORT OF GOING 6004 03:12:55,760 --> 03:12:57,480 IN, ALL THE THINGS I WAS WORRIED 6005 03:12:57,480 --> 03:13:01,680 ABOUT, AND THEN WHAT REALLY 6006 03:13:01,680 --> 03:13:01,960 HAPPENED. 6007 03:13:01,960 --> 03:13:05,840 SO ON THE NEXT SLIDE, YOU'LL SEE 6008 03:13:05,840 --> 03:13:06,640 OUR EXPECTATION. 6009 03:13:06,640 --> 03:13:07,480 THESE ARE THINGS YOU'VE HEARD 6010 03:13:07,480 --> 03:13:09,880 OVER AND OVER AND OVER AGAIN IN 6011 03:13:09,880 --> 03:13:10,840 THE PREVIOUS SPEAKERS, LIKE WHAT 6012 03:13:10,840 --> 03:13:13,040 DO WE DO ABOUT THIS UNCERTAINTY? 6013 03:13:13,040 --> 03:13:14,640 WE'RE USED TO TALKING ABOUT 6014 03:13:14,640 --> 03:13:15,320 UNCERTAINTY, ARE WE GOING TO BE 6015 03:13:15,320 --> 03:13:16,600 ABLE TO COMMUNICATE IT AND IS IT 6016 03:13:16,600 --> 03:13:18,680 GOING TO BE TOO OFFPUTTING? 6017 03:13:18,680 --> 03:13:22,360 AND BASICALLY WHAT WE FOUND IS 6018 03:13:22,360 --> 03:13:24,520 THAT PEOPLE DIDN'T CARE. 6019 03:13:24,520 --> 03:13:25,760 THEY DIDN'T -- THEY WEREN'T -- I 6020 03:13:25,760 --> 03:13:28,560 WAS SO FIXATED ON HOW ARE WE 6021 03:13:28,560 --> 03:13:29,280 GOING TO DO THIS, HOW ARE WE 6022 03:13:29,280 --> 03:13:30,800 GOING TO CONTEXTUALIZE, AND 6023 03:13:30,800 --> 03:13:32,520 PEOPLE WERE LIKE, WE GET IT. 6024 03:13:32,520 --> 03:13:32,840 IT'S OKAY. 6025 03:13:32,840 --> 03:13:34,160 YOU KNOW -- WE KNOW THAT YOU 6026 03:13:34,160 --> 03:13:36,440 DON'T KNOW EXACTLY WHAT THIS 6027 03:13:36,440 --> 03:13:38,480 EXPOSURE MEANS FOR MY HEALTH, 6028 03:13:38,480 --> 03:13:39,680 BUT I APPRECIATE HAVING -- I 6029 03:13:39,680 --> 03:13:41,320 APPRECIATE KNOWING ABOUT IT, AND 6030 03:13:41,320 --> 03:13:42,720 KNOWING ABOUT IT IS GOING TO 6031 03:13:42,720 --> 03:13:45,040 ALLOW ME TO MAKE SOME DECISIONS 6032 03:13:45,040 --> 03:13:47,400 ABOUT WHETHER OR NOT I WANT TO 6033 03:13:47,400 --> 03:13:50,720 DO THINGS DIFFERENTLY. 6034 03:13:50,720 --> 03:13:52,320 SO AGAIN, WE WERE WORRIED ABOUT 6035 03:13:52,320 --> 03:13:53,760 THE LONG DELAY BETWEEN 6036 03:13:53,760 --> 03:13:54,920 MEASUREMENT AND REPORTBACK. 6037 03:13:54,920 --> 03:13:57,200 SO WE KNOW THAT LABS, DATA TAKE 6038 03:13:57,200 --> 03:13:58,840 A WHILE TO GENERATE, THEY HAVE 6039 03:13:58,840 --> 03:14:00,120 TO BE DONE IN BATCHES, IT TAKES 6040 03:14:00,120 --> 03:14:02,200 A LONG TIME FOR US TO DEVELOP 6041 03:14:02,200 --> 03:14:02,840 THE REPORTS. 6042 03:14:02,840 --> 03:14:05,640 WE WERE WORRIED THAT WE MEASURED 6043 03:14:05,640 --> 03:14:08,360 EXPOSURE DURING PREGNANCY, WE'RE 6044 03:14:08,360 --> 03:14:09,360 GIVING PEOPLE INFORMATION BACK 6045 03:14:09,360 --> 03:14:10,720 TWO YEARS LATER, AS WAS 6046 03:14:10,720 --> 03:14:12,200 MENTIONED EARLIER, AND THAT'S -- 6047 03:14:12,200 --> 03:14:14,160 YOU KNOW, WE WISH WE COULD DO IT 6048 03:14:14,160 --> 03:14:20,760 FASTER, BUT THAT'S THE REALITY. 6049 03:14:20,760 --> 03:14:22,640 AND THEN WHAT WE GOT WAS, YES, 6050 03:14:22,640 --> 03:14:24,080 WE'D LIKE IT SOONER BUT WE'RE 6051 03:14:24,080 --> 03:14:25,320 HAPPY WE GOT IT. 6052 03:14:25,320 --> 03:14:26,840 AND SOME OF THAT IS TO MAKE 6053 03:14:26,840 --> 03:14:29,480 DECISIONS ABOUT FUTURE 6054 03:14:29,480 --> 03:14:31,440 PREGNANCIES OR WAYS TO, IF YOU 6055 03:14:31,440 --> 03:14:33,160 HAVE AN ASTHMATIC CHILD, FOR 6056 03:14:33,160 --> 03:14:34,680 EXAMPLE, REDUCING EXPOSURE 6057 03:14:34,680 --> 03:14:36,760 REALLY STILL IS VERY BENEFICIAL 6058 03:14:36,760 --> 03:14:38,160 AND THERE'S WAYS THAT IT CAN 6059 03:14:38,160 --> 03:14:42,560 IMPROVE HEALTH. 6060 03:14:42,560 --> 03:14:44,400 SO THE LAST WAS THE THING I 6061 03:14:44,400 --> 03:14:46,040 PROBABLY WORRIED THE MOST ABOUT, 6062 03:14:46,040 --> 03:14:47,320 WHAT ARE WE GOING TO DO ABOUT 6063 03:14:47,320 --> 03:14:48,720 THIS QUANTITATIVE DATA? 6064 03:14:48,720 --> 03:14:50,960 YOU KNOW, WE FOLLOWED THE 6065 03:14:50,960 --> 03:14:52,280 GUIDANCE, BUT I WAS QUITE 6066 03:14:52,280 --> 03:14:53,080 CONCERNED THAT WE WOULDN'T BE 6067 03:14:53,080 --> 03:14:54,360 ABLE TO COMMUNICATE THIS 6068 03:14:54,360 --> 03:14:58,000 EFFECTIVELY. 6069 03:14:58,000 --> 03:14:59,720 SO WE SPENT A LOT OF TIME AGAIN 6070 03:14:59,720 --> 03:15:00,880 PROVIDING EXTRA RESOURCES AND 6071 03:15:00,880 --> 03:15:02,080 EXTRA SUPPORT, AND I THINK THE 6072 03:15:02,080 --> 03:15:03,680 THINGS THAT WERE ACTUALLY THE 6073 03:15:03,680 --> 03:15:07,840 MOST HELPFUL WERE THE INFO 6074 03:15:07,840 --> 03:15:10,680 SESSIONS, THE Q & As, SO WE 6075 03:15:10,680 --> 03:15:13,200 HOSTED THREE Q & As ALL WITH 6076 03:15:13,200 --> 03:15:14,360 RESEARCHERS WHO ARE BILINGUAL, 6077 03:15:14,360 --> 03:15:15,520 WHO COULD ANSWER QUESTIONS. 6078 03:15:15,520 --> 03:15:16,880 AND I THINK ONE OF THE COOLEST 6079 03:15:16,880 --> 03:15:18,440 THINGS ACTUALLY WAS WHEN YOU 6080 03:15:18,440 --> 03:15:19,800 COULD GET A NUMBER OF 6081 03:15:19,800 --> 03:15:21,640 PARTICIPANTS IN A ROOM TOGETHER. 6082 03:15:21,640 --> 03:15:23,280 SO ONE PARTICIPANT MIGHT BE LIKE 6083 03:15:23,280 --> 03:15:24,600 I DON'T HAVE ANY QUESTIONS BUT 6084 03:15:24,600 --> 03:15:27,160 THEN SOMEBODY ELSE WILL ASK A 6085 03:15:27,160 --> 03:15:28,280 QUESTION, I DO HAVE THAT 6086 03:15:28,280 --> 03:15:29,440 QUESTION, THAT'S AN INTERESTING 6087 03:15:29,440 --> 03:15:29,720 QUESTION. 6088 03:15:29,720 --> 03:15:30,360 AND THEN THERE WAS A DISCUSSION 6089 03:15:30,360 --> 03:15:31,720 AND DIALOGUE WITHIN PARTICIPANTS 6090 03:15:31,720 --> 03:15:32,840 THAT WAS REALLY VALUABLE, I 6091 03:15:32,840 --> 03:15:35,320 THINK, TO IMPROVING THEIR 6092 03:15:35,320 --> 03:15:36,720 UNDERSTANDING AND HELPING US TO 6093 03:15:36,720 --> 03:15:37,800 UNDERSTAND HOW WE COULD CONVEY 6094 03:15:37,800 --> 03:15:42,200 INFORMATION BETTER. 6095 03:15:42,200 --> 03:15:43,360 SO I GAVE YOU ALL THESE 6096 03:15:43,360 --> 03:15:44,400 EXPECTATION AND REALITIES, LIKE 6097 03:15:44,400 --> 03:15:47,360 HOW DO WE KNOW ANY OF THIS? 6098 03:15:47,360 --> 03:15:47,880 WE ASKED. 6099 03:15:47,880 --> 03:15:51,640 SO AFTER OUR REPORTS, WE 6100 03:15:51,640 --> 03:15:55,320 DEVELOPED AN EVALUATION TOOL, 6101 03:15:55,320 --> 03:15:56,680 SURVEY, THAT PEOPLE COULD 6102 03:15:56,680 --> 03:15:57,560 RESPOND TO, AND THEN THROUGH THE 6103 03:15:57,560 --> 03:16:00,200 Q & A SESSIONS, THROUGH THE INFO 6104 03:16:00,200 --> 03:16:02,240 SESSIONS, WE LEARNED A LOT ABOUT 6105 03:16:02,240 --> 03:16:04,120 HOW PEOPLE RESPONDED TO WHAT WE 6106 03:16:04,120 --> 03:16:05,200 HAD DONE, WE LEARNED ABOUT 6107 03:16:05,200 --> 03:16:06,520 THINGS THAT WE COULD DO BETTER 6108 03:16:06,520 --> 03:16:11,840 AND LIRNE LEARNED, AGAIN, THAT F 6109 03:16:11,840 --> 03:16:14,320 MY INSECURITIES -- SOME OF THEM 6110 03:16:14,320 --> 03:16:15,200 MAY BE VALID BUT SOME OF THEM, 6111 03:16:15,200 --> 03:16:16,600 WE COULD BE MORE CONFIDENT GOING 6112 03:16:16,600 --> 03:16:18,480 IN, SO I THINK THE NEXT TIME WE 6113 03:16:18,480 --> 03:16:20,120 DO THIS, I FEEL BETTER THAT THAT 6114 03:16:20,120 --> 03:16:21,960 WILL BE EQUIPPED. 6115 03:16:21,960 --> 03:16:24,040 NEXT SLIDE, SO JUST TO 6116 03:16:24,040 --> 03:16:25,520 SUMMARIZE, WE'RE NOT REALLY 6117 03:16:25,520 --> 03:16:26,960 TALKING ABOUT WHETHER TO RETURN 6118 03:16:26,960 --> 03:16:28,160 RESULTS AT THIS POINT, WE'RE 6119 03:16:28,160 --> 03:16:29,080 JUST TALKING ABOUT HOW TO DO IT 6120 03:16:29,080 --> 03:16:31,000 IN THE MOST EFFECTIVE WAY. 6121 03:16:31,000 --> 03:16:32,400 AND THERE ARE SOME ASPECTS OF 6122 03:16:32,400 --> 03:16:34,040 THE RESULTS RETURN THAT ARE 6123 03:16:34,040 --> 03:16:37,520 GENERALIZABLE, AND SOME THAT ARE 6124 03:16:37,520 --> 03:16:38,720 CONTEXT-SPECIFIC. 6125 03:16:38,720 --> 03:16:40,680 AND SO -- AND SORT OF 6126 03:16:40,680 --> 03:16:41,880 RESEARCHERS, MY PERSPECTIVE ON 6127 03:16:41,880 --> 03:16:43,800 HOW THE RESULTS WILL BE RECEIVED 6128 03:16:43,800 --> 03:16:44,720 AREN'T ALWAYS MATCHING REALITY 6129 03:16:44,720 --> 03:16:46,160 OF HOW THE PARTICIPANTS RECEIVE 6130 03:16:46,160 --> 03:16:48,400 THEM. 6131 03:16:48,400 --> 03:16:50,080 WHICH IS WHY IT SO IMPORTANT TO 6132 03:16:50,080 --> 03:16:52,840 GET DIRECT FEEDBACK FROM 6133 03:16:52,840 --> 03:16:53,240 PARTICIPANTS. 6134 03:16:53,240 --> 03:16:56,920 IT'S MY LAST SLIDE. 6135 03:16:56,920 --> 03:16:58,080 SO JUST IN TERMS OF 6136 03:16:58,080 --> 03:16:59,240 RECOMMENDATIONS, I THINK HAVING 6137 03:16:59,240 --> 03:17:00,360 WORKSHOPS OR TRAINING SESSIONS 6138 03:17:00,360 --> 03:17:02,200 THAT BOOST CONFIDENCE FOR 6139 03:17:02,200 --> 03:17:04,120 RESEARCHERS SO THAT THERE ARE 6140 03:17:04,120 --> 03:17:06,000 RESOURCES AVAILABLE, AND WE CAN 6141 03:17:06,000 --> 03:17:07,960 TO A GOOD JOB OR A GOOD ENOUGH 6142 03:17:07,960 --> 03:17:08,400 JOB, RIGHT? 6143 03:17:08,400 --> 03:17:10,320 SO WE MIGHT NOT BE PERFECT, BUT 6144 03:17:10,320 --> 03:17:11,880 WE CAN'T LET PERFECT BE THE 6145 03:17:11,880 --> 03:17:14,800 ENEMY OF THE GOOD IN THIS CASE. 6146 03:17:14,800 --> 03:17:16,520 AND THE EVALUATIONS WERE 6147 03:17:16,520 --> 03:17:17,360 ABSOLUTELY CRITICAL SO THAT WE 6148 03:17:17,360 --> 03:17:18,800 COULD KNOW WHAT WE DID WELL AND 6149 03:17:18,800 --> 03:17:20,240 WHERE THERE'S SPACE TO IMPROVE. 6150 03:17:20,240 --> 03:17:21,680 AGAIN, SOME ASPECTS OF THE 6151 03:17:21,680 --> 03:17:24,640 REPORT WERE GENERALIZABLE, AND 6152 03:17:24,640 --> 03:17:30,680 SOME REALLY WERE NOT. 6153 03:17:30,680 --> 03:17:31,360 AND THEN 6154 03:17:31,360 --> 03:17:33,000 THE BIGGEST THING I COME BACK TO 6155 03:17:33,000 --> 03:17:35,280 OVER AND OVER AGAIN, TRAINING 6156 03:17:35,280 --> 03:17:37,880 FOR REPORTBACK REQUIRES TIME AND 6157 03:17:37,880 --> 03:17:38,200 RESOURCES. 6158 03:17:38,200 --> 03:17:40,320 IF WE HADN'T PLANNED TO DO IT 6159 03:17:40,320 --> 03:17:41,960 INITIALLY, I WOULD FEEL EVEN 6160 03:17:41,960 --> 03:17:43,840 LESS CONFIDENT THAN WHERE WE 6161 03:17:43,840 --> 03:17:44,280 STARTED. 6162 03:17:44,280 --> 03:17:46,520 THE NEXT SLIDE IS 6163 03:17:46,520 --> 03:17:46,960 ACKNOWLEDGMENTS. 6164 03:17:46,960 --> 03:17:49,480 THE BIGGEST ONE IS STUDY 6165 03:17:49,480 --> 03:17:50,560 PARTICIPANTS FOR THEIR TIME 6166 03:17:50,560 --> 03:17:51,920 CONTRIBUTING TO THE RESEARCH, 6167 03:17:51,920 --> 03:17:52,880 AND ALSO THE RESEARCH -- YOU 6168 03:17:52,880 --> 03:17:54,400 KNOW, THEIR TIME AND FEEDBACK OF 6169 03:17:54,400 --> 03:17:55,800 HOW WE DID IN TERMS OF REPORTING 6170 03:17:55,800 --> 03:17:57,720 BACK. 6171 03:17:57,720 --> 03:18:01,040 THAT'S ALL. 6172 03:18:01,040 --> 03:18:11,920 >>THANK YOU, JULIE, JE JULIA. 6173 03:18:14,800 --> 03:18:15,520 CARMEN. 6174 03:18:15,520 --> 03:18:16,320 >>QUESTION, ALSO ANOTHER 6175 03:18:16,320 --> 03:18:16,880 RECOMMENDATION. 6176 03:18:16,880 --> 03:18:18,760 SOMETHING THAT HELPED US TO MAKE 6177 03:18:18,760 --> 03:18:20,520 OUR REPORTBACK MORE RESPONSIVE 6178 03:18:20,520 --> 03:18:24,880 TO OUR PARTICIPANTS WAS TO HAVE 6179 03:18:24,880 --> 03:18:28,240 COMMUNITY ADVISORY TEAM THAT HAS 6180 03:18:28,240 --> 03:18:30,760 REPRESENTATION FROM THE 6181 03:18:30,760 --> 03:18:31,080 PARTICIPANTS. 6182 03:18:31,080 --> 03:18:32,200 AND THE PEOPLE THAT WORK IN THE 6183 03:18:32,200 --> 03:18:33,160 CLINICS WHERE WE DO OUR 6184 03:18:33,160 --> 03:18:34,320 RESEARCH. 6185 03:18:34,320 --> 03:18:39,440 THAT HAS HELPED US DEVELOP A 6186 03:18:39,440 --> 03:18:41,000 SOUNDING BOARD WHERE EVERY 6187 03:18:41,000 --> 03:18:42,040 MATERIAL THAT -- EVERY TIME WE 6188 03:18:42,040 --> 03:18:44,040 DO A REPORTBACK, EVEN IF IT'S A 6189 03:18:44,040 --> 03:18:45,560 GROUP OR INDIVIDUAL, WE BRING 6190 03:18:45,560 --> 03:18:47,320 THE MATERIALS, THEY HELP US 6191 03:18:47,320 --> 03:18:48,720 DEVELOP THE MATERIAL SO THAT 6192 03:18:48,720 --> 03:18:50,800 THEY ARE CULTURALLY COMPETENT, 6193 03:18:50,800 --> 03:18:53,200 SO THAT THEY HAVE THE 6194 03:18:53,200 --> 03:18:54,280 INFORMATION BECAUSE ONE THING 6195 03:18:54,280 --> 03:18:56,680 WE'VE BEEN DOING THIS SINCE 6196 03:18:56,680 --> 03:18:57,120 2015. 6197 03:18:57,120 --> 03:18:59,000 ONE THING THAT OUR PARTICIPANTS 6198 03:18:59,000 --> 03:19:01,400 WANT IS NOT JUST WHAT DO I HAVE 6199 03:19:01,400 --> 03:19:03,640 IN MY BODY, HOW MUCH OF IT OR IS 6200 03:19:03,640 --> 03:19:06,920 IT BAD OR GOOD, OR WHAT CAN BE 6201 03:19:06,920 --> 03:19:11,160 THE POSSIBLE CONSEQUENCES. 6202 03:19:11,160 --> 03:19:12,520 PEOPLE WANT TO KNOW WHAT TO DO. 6203 03:19:12,520 --> 03:19:13,880 PEOPLE WANT TO KNOW WHAT ARE THE 6204 03:19:13,880 --> 03:19:15,520 DIFFERENT OPTIONS THAT I HAVE? 6205 03:19:15,520 --> 03:19:17,920 AND HAVING THAT ADVISORY TEAM IS 6206 03:19:17,920 --> 03:19:20,960 REALLY IMPORTANT TO BE ABLE -- 6207 03:19:20,960 --> 03:19:22,280 IN OUR CASE, WE ARE ABLE TO 6208 03:19:22,280 --> 03:19:24,920 DEVELOP SHORT ANIMATED VIDEOS 6209 03:19:24,920 --> 03:19:28,760 EXPLAINING EACH ONE OF THE 6210 03:19:28,760 --> 03:19:29,720 SUBSTANCES AND INCLUDE 6211 03:19:29,720 --> 03:19:31,000 INFORMATION ON PREVENTION, 6212 03:19:31,000 --> 03:19:32,200 DEVELOPING INFO GRAPHS AND 6213 03:19:32,200 --> 03:19:33,320 PRINTED MATERIALS THAT CAN GO TO 6214 03:19:33,320 --> 03:19:37,600 THE CLINICS WHERE THE PEOPLE 6215 03:19:37,600 --> 03:19:40,760 THAT WE SERVE ATTEND SO THAT THE 6216 03:19:40,760 --> 03:19:42,000 CLINICIANS, OUR COLLABORATORS 6217 03:19:42,000 --> 03:19:43,520 ARE ALSO INFORMED AND CAN 6218 03:19:43,520 --> 03:19:47,000 PROVIDE INFORMATION. 6219 03:19:47,000 --> 03:19:47,480 FLOOB 6220 03:19:47,480 --> 03:19:50,360 >>THOSE ARE GREAT SUGGESTIONS. 6221 03:19:50,360 --> 03:19:59,440 >>YES, THANK YOU. 6222 03:19:59,440 --> 03:20:01,920 >>IN MY EXPERIENCE, 6223 03:20:01,920 --> 03:20:03,960 PARTICIPANTS OFTEN WANT TO BE IN 6224 03:20:03,960 --> 03:20:05,760 COMMUNITY, ARE INTERESTED IN 6225 03:20:05,760 --> 03:20:06,960 BEING IN COMMUNITY WITH EACH 6226 03:20:06,960 --> 03:20:08,120 OTHER SO HAVING A GROUP INFO 6227 03:20:08,120 --> 03:20:08,680 SESSION MAKES SENSE. 6228 03:20:08,680 --> 03:20:10,600 DID YOU HAVE INSTANCES WHERE 6229 03:20:10,600 --> 03:20:12,880 PEOPLE WERE NOT INTERESTED 6230 03:20:12,880 --> 03:20:14,320 BECAUSE OF CONFIDENTIALITY REAPS 6231 03:20:14,320 --> 03:20:15,760 AND IF SO, WHAT WOULD YOU DO 6232 03:20:15,760 --> 03:20:16,680 ABOUT THAT SITUATION? 6233 03:20:16,680 --> 03:20:18,800 >>SO I THINK IT'S A GOOD 6234 03:20:18,800 --> 03:20:19,120 QUESTION. 6235 03:20:19,120 --> 03:20:21,760 I THINK WE PRESENTED THE INFO 6236 03:20:21,760 --> 03:20:23,520 SESSION AND THE Q & A SESSION, 6237 03:20:23,520 --> 03:20:24,600 ACTUALLY WE HAD SOME OF THEM IN 6238 03:20:24,600 --> 03:20:27,760 PERSON AND SOME OF THEM ON I'D 6239 03:20:27,760 --> 03:20:30,120 SAY ZOOM BUT IT WASN'T REALLY 6240 03:20:30,120 --> 03:20:33,520 ZOOM, IT WAS MORE LIKE FACETIME 6241 03:20:33,520 --> 03:20:34,800 BECAUSE MOST PEOPLE WERE USING 6242 03:20:34,800 --> 03:20:35,160 SMARTPHONES. 6243 03:20:35,160 --> 03:20:36,560 SO I THINK WE PRESENTED IT, YOU 6244 03:20:36,560 --> 03:20:38,320 DON'T HAVE TO HAVE YOUR CAMERA 6245 03:20:38,320 --> 03:20:41,000 ON, IF THAT'S NOT AN ENVIRONMENT 6246 03:20:41,000 --> 03:20:42,200 YOU'RE COMFORTABLE IN, THAT'S 6247 03:20:42,200 --> 03:20:42,680 FINE. 6248 03:20:42,680 --> 03:20:44,040 THERE'S OTHER WAYS TO REACH OUR 6249 03:20:44,040 --> 03:20:45,480 STAFF AND TO ASK YOUR QUESTIONS. 6250 03:20:45,480 --> 03:20:47,880 AND SO WE SORT OF HAVE PROVIDED 6251 03:20:47,880 --> 03:20:50,440 SORT OF DIFFERENT WAYS TO MAKE 6252 03:20:50,440 --> 03:20:52,880 SURE THAT WE WERE ACCESSIBLE SO 6253 03:20:52,880 --> 03:20:53,960 THAT PEOPLE COULD HAVE THEIR 6254 03:20:53,960 --> 03:20:55,000 QUESTIONS ANSWERED ONE WAY OR 6255 03:20:55,000 --> 03:20:59,000 THE OTHER. 6256 03:20:59,000 --> 03:21:01,480 >>MATT? 6257 03:21:01,480 --> 03:21:03,480 >>JULIE, THAT'S GREAT. 6258 03:21:03,480 --> 03:21:04,880 IT'S SO GREAT TO HEAR FROM YOU 6259 03:21:04,880 --> 03:21:07,320 AND JYOTI TO HAVE SOME EMPIRICAL 6260 03:21:07,320 --> 03:21:08,440 DATA ON WHAT IT MEANS TO 6261 03:21:08,440 --> 03:21:10,160 ACTUALLY REPORT BACK IN 6262 03:21:10,160 --> 03:21:10,680 DIFFERENT SITUATIONS. 6263 03:21:10,680 --> 03:21:16,320 CAN I GET YOU TO COGITATE A 6264 03:21:16,320 --> 03:21:18,280 LITTLE BIT ABOUT THIS TAKING 6265 03:21:18,280 --> 03:21:19,200 CENTRALIZED RESOURCES AND 6266 03:21:19,200 --> 03:21:20,480 ADAPTING THEM FOR LOCAL CONTEXT, 6267 03:21:20,480 --> 03:21:21,960 AND THINK ABOUT A PROGRAM LIKE 6268 03:21:21,960 --> 03:21:24,400 ECHO, WHICH IS NATIONWIDE, AND 6269 03:21:24,400 --> 03:21:27,040 YOU KNOW, IF ECHO IS THINKING 6270 03:21:27,040 --> 03:21:30,800 ABOUT HAVING SOME POLICIES AND 6271 03:21:30,800 --> 03:21:33,640 PRACTICES RELATED TO REPORTBACK, 6272 03:21:33,640 --> 03:21:35,800 WHAT'S THE BALANCE BETWEEN 6273 03:21:35,800 --> 03:21:36,400 CENTRALIZED RESOURCE AND LOCAL 6274 03:21:36,400 --> 03:21:38,920 CONTEXT? 6275 03:21:38,920 --> 03:21:40,840 >>I THINK YOU HIT IT EXACTLY. 6276 03:21:40,840 --> 03:21:41,760 IT'S BALANCE, RIGHT? 6277 03:21:41,760 --> 03:21:45,320 I THINK ONE OF THE OTHER 6278 03:21:45,320 --> 03:21:48,400 CHALLENGES IS THAT BECAUSE OF 6279 03:21:48,400 --> 03:21:49,920 THE WAY ECHO IS ORGANIZED, 6280 03:21:49,920 --> 03:21:50,800 YOU'RE NOT GOING TO HAVE 6281 03:21:50,800 --> 03:21:51,240 EXPERTS. 6282 03:21:51,240 --> 03:21:52,600 IT REALLY IS -- I SHOULD STEP 6283 03:21:52,600 --> 03:21:54,600 BACK AND SAY, IT'S SUPER 6284 03:21:54,600 --> 03:21:57,000 IMPORTANT THAT THE COHORT IS THE 6285 03:21:57,000 --> 03:21:58,960 ONE COMMUNICATING THE RESULTS. 6286 03:21:58,960 --> 03:22:00,920 SO THE RESULTS CAN'T COME FROM 6287 03:22:00,920 --> 03:22:02,880 SOME CENTRAL PLACE WHERE THERE'S 6288 03:22:02,880 --> 03:22:03,800 NO CONNECTION. 6289 03:22:03,800 --> 03:22:08,240 I THINK THE CONNECTION IS REALLY 6290 03:22:08,240 --> 03:22:08,560 IMPORTANT. 6291 03:22:08,560 --> 03:22:13,280 THAT SAID, IT'S NOT LIKE EVERY 6292 03:22:13,280 --> 03:22:15,640 COHORT IS GOING TO HAVE A PER 6293 03:22:15,640 --> 03:22:16,760 FLUORINATED EXPERTS OR AN EXPERT 6294 03:22:16,760 --> 03:22:18,040 IN EVERY SINGLE ASPECT, SO I 6295 03:22:18,040 --> 03:22:19,920 THINK HAVING SOME SORT OF 6296 03:22:19,920 --> 03:22:21,280 CENTRALIZED RESOURCE BECOMES 6297 03:22:21,280 --> 03:22:23,800 REALLY IMPORTANT WHETHER IT TO 6298 03:22:23,800 --> 03:22:26,760 TRAIN THE FOLKS WHO ARE OUT, 6299 03:22:26,760 --> 03:22:28,640 GIVING THEM THE INFORMATION AND 6300 03:22:28,640 --> 03:22:30,360 THE CONFIDENCE TO BE ABLE TO GO 6301 03:22:30,360 --> 03:22:31,640 OUT AND COMMUNICATE THOSE 6302 03:22:31,640 --> 03:22:35,160 RESULTS. 6303 03:22:35,160 --> 03:22:36,880 AND THE SORT OF CENTRALIZED 6304 03:22:36,880 --> 03:22:37,920 RESOURCES BECAUSE IT DOESN'T 6305 03:22:37,920 --> 03:22:39,080 REALLY MAKE SENSE FOR 50 6306 03:22:39,080 --> 03:22:40,080 DIFFERENT GROUPS TO BE 6307 03:22:40,080 --> 03:22:41,760 DEVELOPING THE SAME INFOGRAPHIC 6308 03:22:41,760 --> 03:22:43,800 OR THE SAME STORY, RIGHT? 6309 03:22:43,800 --> 03:22:45,520 THERE'S EFFICIENCY IN THE THINGS 6310 03:22:45,520 --> 03:22:50,040 THAT WE CAN SHARE. 6311 03:22:50,040 --> 03:22:51,800 HOWEVER, THERE ARE THINGS THAT 6312 03:22:51,800 --> 03:22:53,640 ARE CONTEXT-SPECIFIC, SO HAVING 6313 03:22:53,640 --> 03:22:54,760 ENOUGH SPACES WHERE CAN YOU DO 6314 03:22:54,760 --> 03:22:55,800 THE ADAPTATIONS THAT ARE GOING 6315 03:22:55,800 --> 03:22:57,200 TO MAKE SENSE FOR THE LOCAL 6316 03:22:57,200 --> 03:22:58,840 CONTEXT BECOMES IMPORTANT, AND 6317 03:22:58,840 --> 03:23:00,600 I'VE BECOME AWARE THAT 6318 03:23:00,600 --> 03:23:02,960 ESPECIALLY IN TERMS OF SPANISH 6319 03:23:02,960 --> 03:23:04,240 TRANSLATION, SO WHEN I TALK TO 6320 03:23:04,240 --> 03:23:07,320 MY FRIENDS WHO HAVE COHORT ON 6321 03:23:07,320 --> 03:23:08,960 THE WEST COAST AND THINGS ARE 6322 03:23:08,960 --> 03:23:11,480 TRANSLATED INTO MEXICAN SPANISH, 6323 03:23:11,480 --> 03:23:13,200 THAT'S NOT ALWAYS UNDERSTANDABLE 6324 03:23:13,200 --> 03:23:14,720 TO THE PEOPLE WHO ARE ON THE 6325 03:23:14,720 --> 03:23:16,200 EAST COAST SPEAKING CARIBBEAN 6326 03:23:16,200 --> 03:23:17,680 SPANISH. 6327 03:23:17,680 --> 03:23:19,640 AND SO THESE SORTS OF SPACES TO 6328 03:23:19,640 --> 03:23:22,280 BE ABLE TO ADAPT TO THE CONTEXT 6329 03:23:22,280 --> 03:23:25,200 THAT THE COHORT IS GOING TO 6330 03:23:25,200 --> 03:23:26,400 UNDERSTAND, I THINK IS CRITICAL. 6331 03:23:26,400 --> 03:23:28,800 BUT THERE IS -- I THINK THERE IS 6332 03:23:28,800 --> 03:23:31,200 A BALANCE, AND IT'S NOT 6333 03:23:31,200 --> 03:23:32,120 EVERYONE'S GOT DO IT ON THEIR 6334 03:23:32,120 --> 03:23:33,040 OWN OR EVERYTHING IS 6335 03:23:33,040 --> 03:23:33,720 CENTRALIZED. 6336 03:23:33,720 --> 03:23:35,480 I THINK THERE'S SOME -- YOU 6337 03:23:35,480 --> 03:23:36,760 KNOW, THERE'S SOME SPACE IN 6338 03:23:36,760 --> 03:23:37,680 BETWEEN THAT AND TRYING TO 6339 03:23:37,680 --> 03:23:39,280 FIGURE OUT WHAT IT -- YOU KNOW, 6340 03:23:39,280 --> 03:23:44,680 WHERE THAT IS. 6341 03:23:44,680 --> 03:23:45,960 >>YES, MONICA. 6342 03:23:45,960 --> 03:23:49,760 >>THANK YOU FOR YOUR TALK. 6343 03:23:49,760 --> 03:23:53,960 I JUST WANT TO ACKNOWLEDGE THE 6344 03:23:53,960 --> 03:23:54,960 PARTNERSHIPS FOR PUBLIC 6345 03:23:54,960 --> 03:23:56,520 ENVIRONMENTAL HEALTH HAS LIKE A 6346 03:23:56,520 --> 03:23:58,160 REPOSITORY, LIKE THEY COLLECT 6347 03:23:58,160 --> 03:23:59,720 INFORMATION DONE ACROSS THE 6348 03:23:59,720 --> 03:24:01,080 PROGRAMS, AND SO IT COULD BE AN 6349 03:24:01,080 --> 03:24:03,720 INTERESTING MODEL TO LOOK AT. 6350 03:24:03,720 --> 03:24:05,200 >>THAT'S A REALLY GOOD POINT 6351 03:24:05,200 --> 03:24:06,840 AND I THINK ACTUALLY 6352 03:24:06,840 --> 03:24:07,960 SOMETHING -- IT REMINDED ME OF 6353 03:24:07,960 --> 03:24:08,840 SOMETHING THAT I WAS GOING TO 6354 03:24:08,840 --> 03:24:10,440 SAY EARLIER IS THAT WHEN WE'RE 6355 03:24:10,440 --> 03:24:12,280 TALKING ABOUT HOW TO GET 6356 03:24:12,280 --> 03:24:13,480 CLINICIANS ENGAGED, BECAUSE A 6357 03:24:13,480 --> 03:24:15,160 LOT OF THEM, I THINK ONE OF THE 6358 03:24:15,160 --> 03:24:17,200 THINGS WE LEARNED ON OUR PANEL 6359 03:24:17,200 --> 03:24:18,720 WAS THAT PEOPLE SAID, OH, IT'S 6360 03:24:18,720 --> 03:24:20,960 THE CLINICIANS, BRING YOUR 6361 03:24:20,960 --> 03:24:23,440 REPORT TO THE CLINICIANS AND THE 6362 03:24:23,440 --> 03:24:24,640 CLINICIANS ON THE CALL ARE LIKE 6363 03:24:24,640 --> 03:24:26,040 DON'T BRING TO ME, I DON'T KNOW 6364 03:24:26,040 --> 03:24:28,760 WHAT TO SAY, ABOUT THESE 6365 03:24:28,760 --> 03:24:31,160 EMERGING CHEMICALS AND THINGS. 6366 03:24:31,160 --> 03:24:32,360 BUT ONE RESOURCE THAT I THINK IS 6367 03:24:32,360 --> 03:24:35,200 REALLY VALUABLE FOR ECHO THAT I 6368 03:24:35,200 --> 03:24:38,720 DON'T RECALL BEING PART OF THE 6369 03:24:38,720 --> 03:24:42,840 ECHO LANDSCAPE SO FAR, ARE THE 6370 03:24:42,840 --> 03:24:45,040 PEDIATRIC ENVIRONMENTAL HEALTH 6371 03:24:45,040 --> 03:24:47,680 SPECIALTY UNIT, THE PEHSUs, 6372 03:24:47,680 --> 03:24:49,760 BUT THE NIEHS RESOURCE WHERE 6373 03:24:49,760 --> 03:24:51,120 PHYSICIANS ARE TRAINED 6374 03:24:51,120 --> 03:24:51,680 GEOGRAPHICALLY ACROSS THE 6375 03:24:51,680 --> 03:24:53,760 COUNTRY TO BE THOSE CENTRALIZED 6376 03:24:53,760 --> 03:24:54,280 RESOURCES. 6377 03:24:54,280 --> 03:24:56,040 AND IN TERMS OF ENVIRONMENTAL 6378 03:24:56,040 --> 03:24:58,920 EXPOSURES, THEY REALLY CAN HELP, 6379 03:24:58,920 --> 03:25:01,000 YOU KNOW, BE A SPACE WHERE A 6380 03:25:01,000 --> 03:25:01,960 LOCAL CLINICIAN COULD CALL IN 6381 03:25:01,960 --> 03:25:03,360 AND BE LIKE, HEY, I'VE GOT A 6382 03:25:03,360 --> 03:25:04,920 PATIENT WHO IS SHOWING ME THIS 6383 03:25:04,920 --> 03:25:06,840 STUFF I DON'T UNDERSTAND. 6384 03:25:06,840 --> 03:25:08,600 AND SO I THINK IF WE COULD TIE 6385 03:25:08,600 --> 03:25:11,880 THEM INTO THE PROCESS OF 6386 03:25:11,880 --> 03:25:15,480 DEVELOPING A REPORTBACK PROGRAM, 6387 03:25:15,480 --> 03:25:17,360 ESPECIALLY AS IT RELATES TO 6388 03:25:17,360 --> 03:25:18,440 ENVIRONMENTAL EXPOSURES. 6389 03:25:18,440 --> 03:25:19,840 I THINK THAT'S WHAT I'M TALKING 6390 03:25:19,840 --> 03:25:21,480 ABOUT, BUT I THINK REPORTBACK 6391 03:25:21,480 --> 03:25:22,880 OBVIOUSLY HAS A LOT MORE 6392 03:25:22,880 --> 03:25:23,760 IMPLICATIONS WHEN WE TALK ABOUT 6393 03:25:23,760 --> 03:25:29,360 ALL OF THESE OTHER THINGS: DIET 6394 03:25:29,360 --> 03:25:30,480 DIET, NEURODEVELOPMENT, OTHER 6395 03:25:30,480 --> 03:25:32,000 SPACES. 6396 03:25:32,000 --> 03:25:33,640 >>ANY OTHER QUESTIONS FROM THE 6397 03:25:33,640 --> 03:25:35,360 ROOM? 6398 03:25:35,360 --> 03:25:40,840 YES, JANE. 6399 03:25:40,840 --> 03:25:41,480 >>HI. 6400 03:25:41,480 --> 03:25:42,680 WHEN YOU SPEAK ABOUT GETTING 6401 03:25:42,680 --> 03:25:44,080 OTHER CLINICIANS INVOLVED, ARE 6402 03:25:44,080 --> 03:25:45,480 YOU WORRIED ABOUT THERE BEING 6403 03:25:45,480 --> 03:25:46,720 ANY INFLUENCE ON THE DATA THAT 6404 03:25:46,720 --> 03:25:49,360 YOU'VE ALREADY COLLECTED? 6405 03:25:49,360 --> 03:25:52,640 >>SO AM I WORRIED ABOUT THE -- 6406 03:25:52,640 --> 03:25:55,760 >>THEM GIVING THEIR INPUT ON 6407 03:25:55,760 --> 03:25:57,280 THE DATA THAT THEY RECEIVED FROM 6408 03:25:57,280 --> 03:25:58,360 THE PATIENT BASED OFF THEIR 6409 03:25:58,360 --> 03:25:59,560 REPORT THAT THE PATIENT 6410 03:25:59,560 --> 03:25:59,840 RECEIVED? 6411 03:25:59,840 --> 03:26:01,680 >>SO GETTING TO EARLIER YOU'RE 6412 03:26:01,680 --> 03:26:03,480 ASKING A LITTLE BIT ABOUT LIKE 6413 03:26:03,480 --> 03:26:07,000 WHAT HAPPENS IF YOU GET ADVICE 6414 03:26:07,000 --> 03:26:08,760 AND YOU CHANGE YOUR BEHAVIORS, 6415 03:26:08,760 --> 03:26:10,560 IS THAT GOING TO INFLUENCE MY 6416 03:26:10,560 --> 03:26:10,840 RESEARCH? 6417 03:26:10,840 --> 03:26:11,840 IS THAT WHAT YOU'RE ASKING 6418 03:26:11,840 --> 03:26:12,160 ABOUT? 6419 03:26:12,160 --> 03:26:13,760 I WANT TO MAKE SURE I 6420 03:26:13,760 --> 03:26:14,080 UNDERSTAND. 6421 03:26:14,080 --> 03:26:15,840 >>NO, FROM THE CLINICIANS, THEM 6422 03:26:15,840 --> 03:26:19,720 BEING ABLE TO ACCESS THE 6423 03:26:19,720 --> 03:26:20,600 INFORMATION, I KNOW THEY WON'T 6424 03:26:20,600 --> 03:26:21,960 HAVE COMPLETE CONTROL OVER THAT 6425 03:26:21,960 --> 03:26:23,200 INFORMATION, TO CHANGE ANYTHING 6426 03:26:23,200 --> 03:26:24,600 THAT'S INSIDE THAT REPORT 6427 03:26:24,600 --> 03:26:26,120 ALREADY, BUT IF THEY ADD A NOTE 6428 03:26:26,120 --> 03:26:29,280 OR, LIKE, IF THEY MAKE A 6429 03:26:29,280 --> 03:26:31,360 SUGGESTION TO THE PATIENT, CAN 6430 03:26:31,360 --> 03:26:34,960 THAT AFFECT YOUR INFORMATION 6431 03:26:34,960 --> 03:26:36,200 THAT YOU'VE BEEN ACCUMULATING 6432 03:26:36,200 --> 03:26:36,560 OVER THE YEARS? 6433 03:26:36,560 --> 03:26:40,520 >>YEAH, SO I THINK THAT WE 6434 03:26:40,520 --> 03:26:41,760 DON'T -- I THINK AT LEAST IN 6435 03:26:41,760 --> 03:26:43,160 NEW YORK, I DON'T KNOW HOW IT IS 6436 03:26:43,160 --> 03:26:44,560 ELSEWHERE, WE DON'T HAVE -- IT'S 6437 03:26:44,560 --> 03:26:46,000 NOT LIKE WE CAN PUT THE REPORT 6438 03:26:46,000 --> 03:26:47,200 INTO SOMEONE'S MEDICAL RECORD 6439 03:26:47,200 --> 03:26:50,400 AND THEN THE -- A DOCTOR COULD 6440 03:26:50,400 --> 03:26:50,920 ACCESS IT. 6441 03:26:50,920 --> 03:26:52,800 YOU KNOW, THE PARTICIPANT WOULD 6442 03:26:52,800 --> 03:26:53,760 REALLY NEED TO TAKE THE REPORT 6443 03:26:53,760 --> 03:26:55,040 AND BRING TO THEIR DOCTOR AND 6444 03:26:55,040 --> 03:26:56,880 SAY HEY, HERE IT IS, CAN YOU 6445 03:26:56,880 --> 03:26:58,240 HELP ME UNDERSTAND THIS? 6446 03:26:58,240 --> 03:27:01,080 AND THEN I THINK THE PEDIATRIC 6447 03:27:01,080 --> 03:27:03,800 HEALTH SPECIALTY UNIT HUBS 6448 03:27:03,800 --> 03:27:05,080 ESSENTIALLY CAN HELP IF YOU GO 6449 03:27:05,080 --> 03:27:06,840 TO A DOCTOR WHO DOESN'T HAVE 6450 03:27:06,840 --> 03:27:07,840 FAMILIARITY WITH THE SORTS OF 6451 03:27:07,840 --> 03:27:09,560 THINGS THAT ARE IN THE REPORT, 6452 03:27:09,560 --> 03:27:11,440 THEN THE PEDIATRIC HEALTH 6453 03:27:11,440 --> 03:27:12,320 SPECIALTY UNIT HUBS COULD BE THE 6454 03:27:12,320 --> 03:27:14,720 ONES WHO THEY GO TO ASK THE -- 6455 03:27:14,720 --> 03:27:17,120 TO SORT OF GET MORE CLARITY TO 6456 03:27:17,120 --> 03:27:18,760 GET MORE INFORMATION THAT 6457 03:27:18,760 --> 03:27:21,280 HOPEFULLY THEN GETS RELAYED BACK 6458 03:27:21,280 --> 03:27:22,480 TO THE PARTICIPANT. 6459 03:27:22,480 --> 03:27:25,840 YOU KNOW, I ALSO AM SORT OF THE 6460 03:27:25,840 --> 03:27:26,800 BELIEF THAT IT'S NOT JUST THE 6461 03:27:26,800 --> 03:27:30,440 CLINICIANS THAT ARE RESPONSIBLE 6462 03:27:30,440 --> 03:27:31,400 FOR MO PROVIDING INFORMATION 6463 03:27:31,400 --> 03:27:31,760 ABOUT THIS. 6464 03:27:31,760 --> 03:27:34,360 I THINK AS RESEARCHERS, AND 6465 03:27:34,360 --> 03:27:36,440 HEALTH WORKERS, RESEARCH STAFF, 6466 03:27:36,440 --> 03:27:38,080 WE CAN DO A LOT OF THAT BECAUSE 6467 03:27:38,080 --> 03:27:39,680 WE HAVE A LOT MORE INFORMATION 6468 03:27:39,680 --> 03:27:43,200 IN SOME CASES THAN THE CLINICAL 6469 03:27:43,200 --> 03:27:44,120 PROVIDERS WHO IN MEDICAL SCHOOL 6470 03:27:44,120 --> 03:27:45,880 UP TO THIS POINT AREN'T REALLY 6471 03:27:45,880 --> 03:27:50,160 TRAINED IN THE SAME KIND OF WAY. 6472 03:27:50,160 --> 03:27:51,520 SO WE CAN PREPARE OURSELVES A 6473 03:27:51,520 --> 03:27:53,480 LITTLE BIT BETTER TO SORT OF BE 6474 03:27:53,480 --> 03:27:55,240 A RESOURCE AS WELL, I THINK. 6475 03:27:55,240 --> 03:27:56,640 DID THAT ANSWER YOUR QUESTION? 6476 03:27:56,640 --> 03:27:58,040 OKAY, GOOD. 6477 03:27:58,040 --> 03:28:00,000 >>THAT QUESTION AND RESPONSE IS 6478 03:28:00,000 --> 03:28:02,040 A GREAT SEGUE TO OUR PARTICIPANT 6479 03:28:02,040 --> 03:28:04,640 PANEL CHAIRED BY JOHNNYE LEWIS. 6480 03:28:04,640 --> 03:28:06,400 SO WE'D LIKE TO BRING FORWARD 6481 03:28:06,400 --> 03:28:07,440 OUR ECHO PARTICIPANTS. 6482 03:28:07,440 --> 03:28:13,160 AS WELL. 6483 03:28:13,160 --> 03:28:17,560 EMILY, PAMELA, JADINE AND 6484 03:28:17,560 --> 03:28:18,360 VIVAINNETE. 6485 03:28:18,360 --> 03:28:20,320 WE'RE SO GRATEFUL TO HAVE YOU 6486 03:28:20,320 --> 03:28:21,560 SHARE IN OUR EXPERIENCE AND ADD 6487 03:28:21,560 --> 03:28:23,160 TO OUR LEARNING IN THE ECHO 6488 03:28:23,160 --> 03:28:31,120 PROGRAM. 6489 03:28:31,120 --> 03:28:32,680 >>I ARGUABLY HAVE THE MOST 6490 03:28:32,680 --> 03:28:34,200 FUN PART OF THIS AND HAVE HAD 6491 03:28:34,200 --> 03:28:36,800 SUCH A GREAT EXPERIENCE TALKING 6492 03:28:36,800 --> 03:28:38,560 WITH EVERYBODY ON THIS PANEL, 6493 03:28:38,560 --> 03:28:40,320 AND I THINK A LOT OF THE ISSUES 6494 03:28:40,320 --> 03:28:42,080 THAT CAME UP ARE THINGS THAT 6495 03:28:42,080 --> 03:28:47,120 HAVE COME UP ACROSS THE GROUP IN 6496 03:28:47,120 --> 03:28:48,600 OUR CHANCES TO TALK WITH EACH 6497 03:28:48,600 --> 03:28:49,680 OTHER BEFORE, SO I THINK A LOT 6498 03:28:49,680 --> 03:28:51,720 OF THE INTRODUCTION I WAS GOING 6499 03:28:51,720 --> 03:28:52,640 TO DO HAS ALREADY HAPPENED, BUT 6500 03:28:52,640 --> 03:28:56,640 WHAT I WOULD LIKE TO START WITH 6501 03:28:56,640 --> 03:28:59,720 IS HAVING EACH OF THE PANELISTS 6502 03:28:59,720 --> 03:29:02,320 DO JUST A COUPLE-MINUTE 6503 03:29:02,320 --> 03:29:03,720 INTRODUCTION OF THE COHORT THAT 6504 03:29:03,720 --> 03:29:04,720 THEY'RE WITH, HOW LONG THEY'VE 6505 03:29:04,720 --> 03:29:08,240 BEEN THERE, AND WHY THEY JOINED, 6506 03:29:08,240 --> 03:29:10,560 BECAUSE I THINK THAT WILL REALLY 6507 03:29:10,560 --> 03:29:11,960 HELP EVERYBODY UNDERSTAND THE 6508 03:29:11,960 --> 03:29:13,160 PERSPECTIVES THAT ARE SITTING 6509 03:29:13,160 --> 03:29:15,880 HERE AT THE TABLE AND THE REALLY 6510 03:29:15,880 --> 03:29:16,960 GREAT WEALTH OF KNOWLEDGE THAT'S 6511 03:29:16,960 --> 03:29:18,800 HERE. 6512 03:29:18,800 --> 03:29:25,560 PAMELA, DO YOU WANT TO START? 6513 03:29:25,560 --> 03:29:26,960 >>I'M GOING TO FORMALLY 6514 03:29:26,960 --> 03:29:33,720 INTRODUCE MYSELF. 6515 03:29:33,720 --> 03:29:37,680 [SPEAKING FOREIGN LANGUAGE] 6516 03:29:37,680 --> 03:29:42,040 JUST SAYING THAT I AM THE 6517 03:29:42,040 --> 03:29:43,920 MEXICAN PEOPLE -- FOR THE RED 6518 03:29:43,920 --> 03:29:45,320 BOTTOM PEOPLE. 6519 03:29:45,320 --> 03:29:47,600 MY PATERNAL GRANDPARENTS ARE THE 6520 03:29:47,600 --> 03:29:50,440 COYOTE PAS CLAN, MY MATERNAL 6521 03:29:50,440 --> 03:29:51,320 GRANDPARENTS ARE THE NEAR THE 6522 03:29:51,320 --> 03:29:52,200 WATER CLAN. 6523 03:29:52,200 --> 03:29:53,600 I AM 39 YEARS OLD. 6524 03:29:53,600 --> 03:29:56,040 I AM A MOTHER OF FOUR KIDS AND I 6525 03:29:56,040 --> 03:29:58,680 AM A PARTICIPANT OF THE NAVAJO 6526 03:29:58,680 --> 03:30:01,160 NATION BIRTH COHORT PROGRAM. 6527 03:30:01,160 --> 03:30:04,480 AS A PARTICIPANT, THE REASON WHY 6528 03:30:04,480 --> 03:30:11,760 I JOINED THE STUDY IS I AM A 6529 03:30:11,760 --> 03:30:13,720 CURRENT EMPLOYEE OF THE WOMEN'S 6530 03:30:13,720 --> 03:30:16,320 HEALTH CLINIC AT THE LOCAL IHS 6531 03:30:16,320 --> 03:30:19,400 IN CHIN LEE AND SINCE 2014, WHEN 6532 03:30:19,400 --> 03:30:25,520 ECHO CAME INTO OUR CLINICS, IT 6533 03:30:25,520 --> 03:30:27,600 REALLY -- I REALLY SHOWED A LOT 6534 03:30:27,600 --> 03:30:31,520 OF INTEREST BECAUSE I WOULD LOOK 6535 03:30:31,520 --> 03:30:32,960 AT THE PAMPHLETS AND THE 6536 03:30:32,960 --> 03:30:34,160 QUESTIONNAIRES AND THE CONSENTS 6537 03:30:34,160 --> 03:30:36,240 AND STUFF TO BE ABLE TO HELP THE 6538 03:30:36,240 --> 03:30:37,320 PROGRAM RECRUIT MORE AND MORE 6539 03:30:37,320 --> 03:30:39,160 PATIENTS. 6540 03:30:39,160 --> 03:30:40,680 IN THAT INSTANCE, I SHOWED A LOT 6541 03:30:40,680 --> 03:30:42,760 OF INTEREST IN IT. 6542 03:30:42,760 --> 03:30:46,360 BUT I WASN'T -- LIKE I HAD 6543 03:30:46,360 --> 03:30:48,280 SEVERAL MISCARRIAGES AS I HAD 6544 03:30:48,280 --> 03:30:49,520 MENTIONED BEFORE, AND THEN 6545 03:30:49,520 --> 03:30:51,760 FINALLY I HAD MY MIRACLE BABY, 6546 03:30:51,760 --> 03:30:54,880 MY RAINBOW BABY, WHICH IS 6547 03:30:54,880 --> 03:30:56,840 PAISLEY, WHO IS 3 YEARS OLD. 6548 03:30:56,840 --> 03:30:59,680 ALONG WITH THAT, I WAS DIAGNOSED 6549 03:30:59,680 --> 03:31:01,400 WITH -- DURING MY PREGNANCY AT 6550 03:31:01,400 --> 03:31:03,800 27 WEEKS, PRENATAL, I WAS 6551 03:31:03,800 --> 03:31:06,440 DIAGNOSED WITH STAGE IIIB 6552 03:31:06,440 --> 03:31:09,840 CERVICAL CANCER, AND A SPREAD TO 6553 03:31:09,840 --> 03:31:13,560 THE LYMPH NODES. 6554 03:31:13,560 --> 03:31:18,320 PAISLEY WAS BORN AT 31 WEEKS, 6555 03:31:18,320 --> 03:31:20,760 AND SHE DID SUFFER SOME 6556 03:31:20,760 --> 03:31:22,320 RESPIRATORY FAILURE AFTER SHE 6557 03:31:22,320 --> 03:31:24,360 WAS BORN. 6558 03:31:24,360 --> 03:31:27,200 SHE WAS IN THE NICU FOR FOUR 6559 03:31:27,200 --> 03:31:28,400 WEEKS AND SINCE I DID NOT WANT 6560 03:31:28,400 --> 03:31:29,960 TO LEAVE HER SIDE, SO I DIDN'T 6561 03:31:29,960 --> 03:31:38,600 START TREATMENTS UNTIL SHE WAS . 6562 03:31:38,600 --> 03:31:44,280 FOR ME, I WOULD REALLY LIKE TO 6563 03:31:44,280 --> 03:31:49,400 TAKE RAPPORT BACK TO MY 6564 03:31:49,400 --> 03:31:50,160 COMMUNITIES, BECAUSE OVER THE 6565 03:31:50,160 --> 03:31:51,360 PAST SIX MONTHS IN MY CLINICS, I 6566 03:31:51,360 --> 03:31:53,200 HAVE BEEN ACTUALLY SITTING IN AS 6567 03:31:53,200 --> 03:31:59,880 THE CLINICAL CASE MANAGER. 6568 03:31:59,880 --> 03:32:00,960 BEING IN THAT POSITION PUT ME IN 6569 03:32:00,960 --> 03:32:05,160 A POSITION TO OVERSEE WHAT OUR 6570 03:32:05,160 --> 03:32:06,760 PATIENTS DO GO THROUGH IN OUR 6571 03:32:06,760 --> 03:32:07,360 COMMUNITIES, WHETHER OR NOT 6572 03:32:07,360 --> 03:32:12,800 THEY'RE PRENATAL, BUT THE 6573 03:32:12,800 --> 03:32:14,080 EFFECTS THAT OUR PATIENTS DO GO 6574 03:32:14,080 --> 03:32:16,840 THROUGH IN OUR COMMUNITY AND, 6575 03:32:16,840 --> 03:32:20,080 YOU KNOW, I WASN'T AWARE OF ALL 6576 03:32:20,080 --> 03:32:21,720 OF THIS UNTIL I ACTUALLY SAT IN 6577 03:32:21,720 --> 03:32:27,520 THAT POSITION MYSELF. 6578 03:32:27,520 --> 03:32:28,920 SO THAT'S WHY I SHOWED INTEREST 6579 03:32:28,920 --> 03:32:30,360 IN THE PROGRAM AND I'M VERY 6580 03:32:30,360 --> 03:32:31,960 GRATEFUL FOR ALL THE REFERRALS 6581 03:32:31,960 --> 03:32:33,640 AND THE SUPPORT THAT WE DO 6582 03:32:33,640 --> 03:32:40,760 RECEIVE FROM OUR SPECIALISTS IN 6583 03:32:40,760 --> 03:32:41,400 CHIN LEE. 6584 03:32:41,400 --> 03:32:44,000 I'LL GO AHEAD AND LET JADINE GO. 6585 03:32:44,000 --> 03:32:45,120 >>HI. 6586 03:32:45,120 --> 03:32:47,320 MY NAME IS JADINE BENJAMIN. 6587 03:32:47,320 --> 03:32:49,960 I AM 20 YEARS OLD AND I ATTEND 6588 03:32:49,960 --> 03:32:50,600 NORTH CAROLINA CENTRAL 6589 03:32:50,600 --> 03:32:51,880 UNIVERSITY IN DURHAM, NORTH 6590 03:32:51,880 --> 03:32:52,680 CAROLINA. 6591 03:32:52,680 --> 03:32:54,200 GO EAGLES! 6592 03:32:54,200 --> 03:32:57,040 I AM ALSO A NAIL TECH ON THE 6593 03:32:57,040 --> 03:32:58,320 SIDE. 6594 03:32:58,320 --> 03:32:59,560 I DO MY NAILS. 6595 03:32:59,560 --> 03:33:01,520 I WAS ACTUALLY BORN INTO THE 6596 03:33:01,520 --> 03:33:04,280 ELGANS COHORT STUDY. 6597 03:33:04,280 --> 03:33:05,760 IT BEEN GOING ON, I BELIEVE 6598 03:33:05,760 --> 03:33:06,880 SINCE I WAS BORN, A LITTLE BIT 6599 03:33:06,880 --> 03:33:09,480 BEFORE. 6600 03:33:09,480 --> 03:33:13,320 MY INTEREST IN THIS IS TO KNOW 6601 03:33:13,320 --> 03:33:15,720 WHAT I'VE CONTRIBUTED TO THIS 6602 03:33:15,720 --> 03:33:19,760 STUDY AND HOW I CAN USE THIS 6603 03:33:19,760 --> 03:33:21,280 INFORMATION IN MAYBE MY OWN 6604 03:33:21,280 --> 03:33:22,280 CLINICAL TRIAL. 6605 03:33:22,280 --> 03:33:29,600 AND I THINK THAT I LIKE TO 6606 03:33:29,600 --> 03:33:32,680 DISCOVER HOW ELSE I CAN 6607 03:33:32,680 --> 03:33:35,360 CONTRIBUTE TO OTHER STUDIES IN 6608 03:33:35,360 --> 03:33:37,560 RESEARCH IN GENERAL. 6609 03:33:37,560 --> 03:33:40,960 THANK YOU. 6610 03:33:40,960 --> 03:33:43,280 >>HI, Y'ALL. 6611 03:33:43,280 --> 03:33:47,320 MY NAME IS VIVAINNETE PEREZ. 6612 03:33:47,320 --> 03:33:49,200 I'M FROM PUERTO RICO, I'M 33 6613 03:33:49,200 --> 03:33:52,640 YEARS OLD, AND I HAVE TWO KIDS. 6614 03:33:52,640 --> 03:33:56,080 THE ELDEST IS 14 AND MY LITTLE 6615 03:33:56,080 --> 03:33:57,800 ONE IS 6. 6616 03:33:57,800 --> 03:34:02,440 I PARTICIPATE IN THE PROGRAM IN 6617 03:34:02,440 --> 03:34:10,200 2016 BECAUSE I WAS CONCERNED 6618 03:34:10,200 --> 03:34:17,560 ABOUT THE -- PRETERM BIRTH -- IN 6619 03:34:17,560 --> 03:34:18,440 PUERTO RICO BECAUSE IT WAS ONE 6620 03:34:18,440 --> 03:34:26,240 OF THE MOST COUNTRY WITH THAT 6621 03:34:26,240 --> 03:34:29,240 ISSUE, SO -- 6622 03:34:29,240 --> 03:34:39,720 [SPEAKING FOREIGN LANGUAGE] 6623 03:34:49,720 --> 03:34:53,000 >>WHAT SHE'S SAYING IS THAT SHE 6624 03:34:53,000 --> 03:34:54,120 JOINED THE STUDY BECAUSE SHE WAS 6625 03:34:54,120 --> 03:34:56,000 INTERESTED IN KNOWING ABOUT 6626 03:34:56,000 --> 03:34:58,040 PRETERM BIRTH. 6627 03:34:58,040 --> 03:35:09,240 PORT RPORTICO PUERTO RICO HAD SD 6628 03:35:09,240 --> 03:35:12,160 IN PRETERM BIRTHS, SHE WANTED TO 6629 03:35:12,160 --> 03:35:14,360 KNOW THE CAUSE, ENVIRONMENTAL OR 6630 03:35:14,360 --> 03:35:15,760 SOMETHING ELSE, AND TO BE ABLE 6631 03:35:15,760 --> 03:35:16,560 TO CONTRIBUTE TO THIS AND TO 6632 03:35:16,560 --> 03:35:27,000 UNDERSTAND FOR THEMSELVES. 6633 03:35:28,320 --> 03:35:29,600 [SPEAKING FOREIGN LANGUAGE] 6634 03:35:29,600 --> 03:35:32,080 >>HER BIRTHS WERE NOT 6635 03:35:32,080 --> 03:35:33,840 PREMATURE, HER CHILDREN WERE NOT 6636 03:35:33,840 --> 03:35:34,720 PREMATURE, BUT THE INFORMATION, 6637 03:35:34,720 --> 03:35:36,640 THE REPORTBACK HELPED HER TO 6638 03:35:36,640 --> 03:35:40,080 MAKE DECISIONS IN THE FUTURE. 6639 03:35:40,080 --> 03:35:42,800 >>THANK YOU. 6640 03:35:42,800 --> 03:35:45,120 >>HI, I'M EMILY MONROE. 6641 03:35:45,120 --> 03:35:46,640 I'M IN THE NEW HAMPSHIRE BIRTH 6642 03:35:46,640 --> 03:35:47,400 COHORT STUDY. 6643 03:35:47,400 --> 03:35:49,720 I'VE BEEN IN SINCE 2017, WHEN MY 6644 03:35:49,720 --> 03:35:50,800 FIRST WAS BORN. 6645 03:35:50,800 --> 03:35:52,080 AND I HAVE FOUR KIDS THAT ARE 6646 03:35:52,080 --> 03:35:54,600 ACTIVELY ENROLLED AND ONE THAT 6647 03:35:54,600 --> 03:35:57,040 WE'RE GATHERING DATA TO 22 WEEKS 6648 03:35:57,040 --> 03:35:57,600 RIGHT NOW. 6649 03:35:57,600 --> 03:35:58,800 THE REASON I JOINED WAS THAT 6650 03:35:58,800 --> 03:36:01,760 THEY BASICALLY PROMISED WATER 6651 03:36:01,760 --> 03:36:04,240 QUALITY INFORMATION AND I GREW 6652 03:36:04,240 --> 03:36:05,680 UP -- I'M THE DAUGHTER OF A 6653 03:36:05,680 --> 03:36:07,080 CAREER MARINE SO I ACTUALLY DID 6654 03:36:07,080 --> 03:36:09,480 SOME TIME ACROSS THE RIVER IN 6655 03:36:09,480 --> 03:36:10,400 NORTHERN VIRGINIA, AND HAD NEVER 6656 03:36:10,400 --> 03:36:11,840 LIVED ON WELL WATER BEFORE I 6657 03:36:11,840 --> 03:36:13,280 MOVED TO NEW HAMPSHIRE, SO I 6658 03:36:13,280 --> 03:36:15,640 JUST WANTED TO KNOW, WHAT AM I 6659 03:36:15,640 --> 03:36:17,520 POTENTIALLY DOING TO MY FAMILY, 6660 03:36:17,520 --> 03:36:20,320 LIVING OUT IN RURAL 6661 03:36:20,320 --> 03:36:21,520 NEW HAMPSHIRE. 6662 03:36:21,520 --> 03:36:23,640 AND SO THE INFORMATION THAT I'VE 6663 03:36:23,640 --> 03:36:24,960 GOTTEN HAS JUST MADE ME FEEL A 6664 03:36:24,960 --> 03:36:26,480 LOT MORE CONFIDENT, RAISING MY 6665 03:36:26,480 --> 03:36:29,120 FAMILY IN THAT ENVIRONMENT, AND 6666 03:36:29,120 --> 03:36:31,200 WE'VE GOTTEN BACK WATER RESULTS, 6667 03:36:31,200 --> 03:36:32,720 AIR QUALITY RESULTS AND THINGS 6668 03:36:32,720 --> 03:36:35,480 THAT JUST GENERALLY MAKE ME FEEL 6669 03:36:35,480 --> 03:36:36,360 REALLY GREAT ABOUT WHERE I LIVE 6670 03:36:36,360 --> 03:36:37,440 AND THAT'S PART OF WHY I 6671 03:36:37,440 --> 03:36:38,320 CONTINUE TO PARTICIPATE. 6672 03:36:38,320 --> 03:36:40,400 I ASKED MY KIDS WHY DO YOU LIKE 6673 03:36:40,400 --> 03:36:41,320 TO PARTICIPATE BECAUSE THEY'VE 6674 03:36:41,320 --> 03:36:44,600 EACH DONE ONE OF THOSE, LIKE -- 6675 03:36:44,600 --> 03:36:47,000 THE VEST WITH THE AIR QUALITY 6676 03:36:47,000 --> 03:36:48,240 MONITOR THAT'S KIND OF 6677 03:36:48,240 --> 03:36:48,960 INTERESTING FOR THEM AND THEY 6678 03:36:48,960 --> 03:36:50,480 THANK YOU FOR THE SUPPLEMENTARY 6679 03:36:50,480 --> 03:36:53,040 GIFT CARDS BECAUSE THEY CAN BUY 6680 03:36:53,040 --> 03:36:53,240 TOYS. 6681 03:36:53,240 --> 03:36:54,080 SO THEY ARE MOTIVATED TO 6682 03:36:54,080 --> 03:37:00,760 CONTINUE TO PARTICIPATE. 6683 03:37:00,760 --> 03:37:01,960 >>SO I THINK A LOT OF THE 6684 03:37:01,960 --> 03:37:03,240 THINGS THAT WE'VE BEEN TALKING 6685 03:37:03,240 --> 03:37:04,160 ABOUT TODAY ARE PROBABLY GOING 6686 03:37:04,160 --> 03:37:06,880 TO COME OUT IN THE PANEL, AND 6687 03:37:06,880 --> 03:37:09,960 WHAT WE'RE GOING TO DO IS WE 6688 03:37:09,960 --> 03:37:11,640 HAVE FOUR EXAMPLES OF THINGS 6689 03:37:11,640 --> 03:37:13,040 THAT ARE HOPEFULLY COVERING A 6690 03:37:13,040 --> 03:37:16,320 LITTLE BIT OF THE BREADTH IN 6691 03:37:16,320 --> 03:37:18,680 ECHO, AND WE'LL ROTATE THROUGH A 6692 03:37:18,680 --> 03:37:19,880 SERIES OF QUESTIONS THAT HAVE 6693 03:37:19,880 --> 03:37:22,360 ACTUALLY COME FROM THE 6694 03:37:22,360 --> 03:37:24,560 ORGANIZERS AND FROM OUR 6695 03:37:24,560 --> 03:37:26,200 DISCUSSIONS, AND GIVE EVERYBODY 6696 03:37:26,200 --> 03:37:28,480 A CHANCE TO SORT OF LEAD OFF 6697 03:37:28,480 --> 03:37:31,800 THAT DISCUSSION AND ASK THEM ALL 6698 03:37:31,800 --> 03:37:32,880 ALSO TO CONTRIBUTE ANYTHING THEY 6699 03:37:32,880 --> 03:37:36,160 FEEL WAS LEFT OUT ALONG THE WAY, 6700 03:37:36,160 --> 03:37:37,600 AND THEN HOPEFULLY WE'LL HAVE 6701 03:37:37,600 --> 03:37:39,200 TIME FOR QUESTIONS AT THE END OF 6702 03:37:39,200 --> 03:37:41,320 THAT THEN. 6703 03:37:41,320 --> 03:37:43,000 AND SO THE FIRST ONE, AND THESE 6704 03:37:43,000 --> 03:37:46,160 ARE EXAMPLES OF CATEGORIES OF 6705 03:37:46,160 --> 03:37:46,600 RESULTS. 6706 03:37:46,600 --> 03:37:49,800 WE TALK A LOT ABOUT 6707 03:37:49,800 --> 03:37:50,520 BIOMONITORRING, BUT ECHO AS 6708 03:37:50,520 --> 03:37:52,400 YOU'VE SEEN IS SO BROAD, AND 6709 03:37:52,400 --> 03:37:54,480 THERE ARE SO MANY RESULTS. 6710 03:37:54,480 --> 03:37:56,880 I MEAN, I CAN'T FORESEE A TIME 6711 03:37:56,880 --> 03:37:59,320 THAT EVERYTHING WILL GO BACK OR 6712 03:37:59,320 --> 03:38:00,600 THAT ANYBODY WOULD WANT THAT. 6713 03:38:00,600 --> 03:38:02,920 BUT THIS IS TO TRY AND FOCUS OUR 6714 03:38:02,920 --> 03:38:04,120 THINKING AROUND JUST A FEW 6715 03:38:04,120 --> 03:38:05,760 DIFFERENT EXAMPLES OF CATEGORIES 6716 03:38:05,760 --> 03:38:08,400 THAT WE MIGHT HAVE. 6717 03:38:08,400 --> 03:38:13,200 SO THE FIRST ONE, YOU RECEIVE A 6718 03:38:13,200 --> 03:38:15,040 LETTER THAT THE CHEMICAL BPA 6719 03:38:15,040 --> 03:38:16,520 THAT WAS DETECTED IN YOUR URINE 6720 03:38:16,520 --> 03:38:18,360 WAS VERY HIGH. 6721 03:38:18,360 --> 03:38:20,760 THE LETTER ALSO INDICATES THAT 6722 03:38:20,760 --> 03:38:22,200 THIS IS A CHEMICAL THAT'S FOUND 6723 03:38:22,200 --> 03:38:25,120 IN THE LINING -- EITHER IN THE 6724 03:38:25,120 --> 03:38:27,600 LINING OR OF MANY FOOD AND 6725 03:38:27,600 --> 03:38:29,960 BEVERAGE CONTAINERS. 6726 03:38:29,960 --> 03:38:32,600 AND I WANT TO START THIS OFF 6727 03:38:32,600 --> 03:38:34,880 WITH VIVAINNETE, SAYING WHAT 6728 03:38:34,880 --> 03:38:35,680 WOULD YOUR PERSONAL REACTION BE 6729 03:38:35,680 --> 03:38:39,600 TO RECEIVING THESE RESULTS AND 6730 03:38:39,600 --> 03:38:41,440 FOR ALL THE PANELIST, WE CAN 6731 03:38:41,440 --> 03:38:46,080 THINK ABOUT THIS AS ANY CHEMICAL 6732 03:38:46,080 --> 03:38:47,400 CONTAMINANT AND I THINK A LOT OF 6733 03:38:47,400 --> 03:38:49,440 THE SAME RESPONSES WILL APPLY. 6734 03:38:49,440 --> 03:38:53,040 SO WHAT WOULD BE YOUR PERSONAL 6735 03:38:53,040 --> 03:38:54,480 REACTION, FEAR, WORRY, LITTLE OR 6736 03:38:54,480 --> 03:38:57,440 NO CONCERN, AND WHAT IMMEDIATE 6737 03:38:57,440 --> 03:39:01,400 QUESTIONS WOULD YOU WANT 6738 03:39:01,400 --> 03:39:02,080 ANSWERED IN THAT INFORMATION IN 6739 03:39:02,080 --> 03:39:04,560 ORDER TO UNDERSTAND AND PLAN HOW 6740 03:39:04,560 --> 03:39:05,920 TO ADDRESS THOSE RESULTS? 6741 03:39:05,920 --> 03:39:07,520 >>YES. 6742 03:39:07,520 --> 03:39:11,920 FIRST I FEEL CONCERN, AND THEN I 6743 03:39:11,920 --> 03:39:13,480 WILL ASK SO MANY QUESTIONS ABOUT 6744 03:39:13,480 --> 03:39:14,760 IT. 6745 03:39:14,760 --> 03:39:22,840 LIKE HOW CAN I GET EXPOSED IF 6746 03:39:22,840 --> 03:39:25,600 BPA OR SOME CONTAMINANT HAVE 6747 03:39:25,600 --> 03:39:27,040 SOME EFFECT ON ME OR MY FAMILY, 6748 03:39:27,040 --> 03:39:33,280 AND WHAT CAN I DO TO REDUCE IT. 6749 03:39:33,280 --> 03:39:36,400 THAT, MAYBE I WANT FEEDBACK TO 6750 03:39:36,400 --> 03:39:39,360 GET OPTIONS. 6751 03:39:39,360 --> 03:39:43,120 >>THANK YOU. 6752 03:39:43,120 --> 03:39:44,760 AND PAMELA, HOW WOULD YOU WANT 6753 03:39:44,760 --> 03:39:46,520 THOSE RESULTS TO BE COMPARED IN 6754 03:39:46,520 --> 03:39:50,920 ORDER TO BETTER UNDERSTAND THEM? 6755 03:39:50,920 --> 03:39:53,320 WOULD YOU LIKE THEM COMPARED 6756 03:39:53,320 --> 03:39:54,720 WITH YOUR COHORT, WITH THE WHOLE 6757 03:39:54,720 --> 03:40:00,200 ECHO COHORT, WITH SOME NATIONAL 6758 03:40:00,200 --> 03:40:00,640 DATASET? 6759 03:40:00,640 --> 03:40:01,960 WHAT WOULD BE THE MOST IMPORTANT 6760 03:40:01,960 --> 03:40:04,040 THING FOR YOU? 6761 03:40:04,040 --> 03:40:05,680 >>I THINK THE DATA THAT I WOULD 6762 03:40:05,680 --> 03:40:08,480 LIKE TO GET REPORTBACK ON WOULD 6763 03:40:08,480 --> 03:40:11,320 PROBABLY BE WITHIN MY COMMUNITY 6764 03:40:11,320 --> 03:40:14,280 AS A WHOLE, AND THEN WITHIN THE 6765 03:40:14,280 --> 03:40:18,440 PARTICIPANTS IN OUR STUDY OR NOT 6766 03:40:18,440 --> 03:40:20,400 EVEN JUST MY COMMUNITY BUT 6767 03:40:20,400 --> 03:40:21,400 NAVAJO NATIONWIDE, BECAUSE THAT 6768 03:40:21,400 --> 03:40:24,480 WILL SET US ON A LEVEL OF WHERE 6769 03:40:24,480 --> 03:40:27,080 I WON'T SAY NORM BUT A 6770 03:40:27,080 --> 03:40:30,920 STANDARDIZED EXPOSURE WOULD BE 6771 03:40:30,920 --> 03:40:34,640 MORE RELEVANT IN THAT MANNER. 6772 03:40:34,640 --> 03:40:38,840 AND THEN AS I HAD MENTIONED 6773 03:40:38,840 --> 03:40:40,520 BEFORE, IN OUR COMMUNITIES LIKE 6774 03:40:40,520 --> 03:40:43,480 ONE OF THE PRESENTERS HAD 6775 03:40:43,480 --> 03:40:45,720 MENTIONED THAT I COULD HONESTLY 6776 03:40:45,720 --> 03:40:47,480 SAY PROBABLY ABOUT 10% OF THE 6777 03:40:47,480 --> 03:40:49,920 NAVAJO NATION POPULATION DO NOT 6778 03:40:49,920 --> 03:40:53,840 HAVE A HIGH SCHOOL DIPLOMA OR 6779 03:40:53,840 --> 03:40:55,360 DIDN'T FINISH HIGH SCHOOL, IT 6780 03:40:55,360 --> 03:40:58,400 WOULD BE NICE, AND THEN TO HAVE 6781 03:40:58,400 --> 03:41:00,200 THEM LIKE IN A GRAPH FORM OR 6782 03:41:00,200 --> 03:41:02,480 EVEN THROUGH SOCIAL MEDIA, THE 6783 03:41:02,480 --> 03:41:07,080 YOUTUBE VIDEOS, I THINK ARE WHAT 6784 03:41:07,080 --> 03:41:08,080 REALLY ATTRACT A LOT OF THE 6785 03:41:08,080 --> 03:41:10,480 YOUNGER POPULATION NOW. 6786 03:41:10,480 --> 03:41:12,160 >>AND ONE OF THE THINGS I JUST 6787 03:41:12,160 --> 03:41:13,480 WANTED TO EMPHASIZE, AND THIS 6788 03:41:13,480 --> 03:41:17,080 CAME OUT IN SOME OF OUR PLANNING 6789 03:41:17,080 --> 03:41:18,120 MEETINGS, AND WAS ALSO BROUGHT 6790 03:41:18,120 --> 03:41:20,280 UP IN REFERENCE TO SOMETHING 6791 03:41:20,280 --> 03:41:23,000 ELSE WAS THAT ABILITY TO LOOK AT 6792 03:41:23,000 --> 03:41:25,960 THAT COMMUNITY RELATIVE TO A 6793 03:41:25,960 --> 03:41:28,040 NATIONAL DATASET SO THAT THERE 6794 03:41:28,040 --> 03:41:30,680 IS THAT OPPORTUNITY OF FINDING 6795 03:41:30,680 --> 03:41:32,200 SOMETHING THAT MAY BE UNUSUALLY 6796 03:41:32,200 --> 03:41:32,880 HIGH THERE. 6797 03:41:32,880 --> 03:41:34,560 AND THAT WAS BROUGHT UP BY 6798 03:41:34,560 --> 03:41:36,400 SEVERAL OF THE PARTICIPANTS IN 6799 03:41:36,400 --> 03:41:38,440 OUR PREVIOUS DISCUSSIONS, AND I 6800 03:41:38,440 --> 03:41:40,160 DON'T THINK WE THINK ABOUT THAT 6801 03:41:40,160 --> 03:41:42,240 A LOT OF TIMES, AND THAT'S VERY 6802 03:41:42,240 --> 03:41:44,240 IMPORTANT. 6803 03:41:44,240 --> 03:41:46,840 EMILY, WHAT WOULD YOU CHANGE IF 6804 03:41:46,840 --> 03:41:49,080 ANYTHING AS A RESULT OF GETTING 6805 03:41:49,080 --> 03:41:50,120 INFORMATION LIKE THIS? 6806 03:41:50,120 --> 03:41:51,520 AND WHAT ADDITIONAL INFORMATION 6807 03:41:51,520 --> 03:41:54,120 WOULD YOU WANT IN ORDER TO MAKE 6808 03:41:54,120 --> 03:41:55,760 THAT DECISION AN EFFECTIVE ONE? 6809 03:41:55,760 --> 03:41:59,080 AND WHAT BARRIERS MIGHT YOU SEE 6810 03:41:59,080 --> 03:41:59,720 TO BEING ABLE TO MAKE THE 6811 03:41:59,720 --> 03:42:02,240 CHANGES YOU WOULD LIKE TO? 6812 03:42:02,240 --> 03:42:05,440 >>SO I THINK IN THE CONTEXT OF 6813 03:42:05,440 --> 03:42:07,200 BPA, WE HAD SAID THIS WAS 6814 03:42:07,200 --> 03:42:08,840 PRESENTED IN ADDITION TO SAYING 6815 03:42:08,840 --> 03:42:10,680 A LOT OF BPA CAN COME FROM HOW 6816 03:42:10,680 --> 03:42:12,360 YOUR FOOD IS PACKAGED. 6817 03:42:12,360 --> 03:42:14,520 AND I WOULD WANT TO HAVE 6818 03:42:14,520 --> 03:42:18,120 SPECIFIC EXAMPLES OF AVOID THIS, 6819 03:42:18,120 --> 03:42:20,320 IF YOU HAVE BEEN BUYING FOOD IN 6820 03:42:20,320 --> 03:42:22,000 PLASTIC, AVOID THIS KIND OF 6821 03:42:22,000 --> 03:42:24,080 PLASTIC, OR YOU KNOW, IF YOU ARE 6822 03:42:24,080 --> 03:42:28,000 ABLE TO, ORGANIC FOOD IS 6823 03:42:28,000 --> 03:42:29,480 HELPFUL, OPT FOR THAT. 6824 03:42:29,480 --> 03:42:32,760 I THINK THE MOST HELPFUL THING 6825 03:42:32,760 --> 03:42:37,280 WOULD BE TO HAVE SOME AMOUNT OF 6826 03:42:37,280 --> 03:42:39,040 HELPFUL NEXT STEPS, AND EVEN IF 6827 03:42:39,040 --> 03:42:42,880 IT'S NOT COMING FROM LIKE A 6828 03:42:42,880 --> 03:42:44,280 WEBSITE THAT THE BIRTH COHORT 6829 03:42:44,280 --> 03:42:47,200 I'M FAMILIAR WITH, YOU KNOW, 6830 03:42:47,200 --> 03:42:48,520 SUPPORTS, IF IT'S SOMETHING THAT 6831 03:42:48,520 --> 03:42:49,840 IT'S COMING FROM MY BIRTH 6832 03:42:49,840 --> 03:42:52,240 COHORT, IT HAS AUTHORITY, IT 6833 03:42:52,240 --> 03:42:54,440 HAS -- LIKE THAT WORD OF MOUTH 6834 03:42:54,440 --> 03:42:55,640 RECOMMENDATION, AND I WOULD GO 6835 03:42:55,640 --> 03:42:58,160 TO THAT SOURCE FIRST. 6836 03:42:58,160 --> 03:42:59,400 TO SEE WHAT DO I DO, WHAT DO I 6837 03:42:59,400 --> 03:43:01,920 DO NEXT, HOW DO I HELP IT. 6838 03:43:01,920 --> 03:43:04,560 AND I THINK ALSO JUST 6839 03:43:04,560 --> 03:43:05,920 RECOGNIZING, I DON'T EXPECT 6840 03:43:05,920 --> 03:43:07,320 THIS -- I DON'T EXPECT THE 6841 03:43:07,320 --> 03:43:09,520 RESEARCHERS TO HAVE ALL THE 6842 03:43:09,520 --> 03:43:10,800 ANSWERS EITHER, I KNOW THAT'S 6843 03:43:10,800 --> 03:43:13,560 COME UP A FEW TIMES, BUT JUST 6844 03:43:13,560 --> 03:43:15,040 KNOWING THAT THERE IS AN 6845 03:43:15,040 --> 03:43:16,120 EXPOSURE RISK OR KNOWING WHAT 6846 03:43:16,120 --> 03:43:19,040 SOME OF THE MAIN SOURCES WERE, 6847 03:43:19,040 --> 03:43:19,920 IT'S JUST HELPFUL. 6848 03:43:19,920 --> 03:43:21,640 AND THEN I CAN MAKE MY OWN 6849 03:43:21,640 --> 03:43:23,240 DECISIONS OF WHAT CAN I AFFORD, 6850 03:43:23,240 --> 03:43:24,760 WHAT'S BEST FOR MY FAMILY, 6851 03:43:24,760 --> 03:43:26,600 WHAT'S EVEN ACHIEVABLE IN THE 6852 03:43:26,600 --> 03:43:28,040 PLACE WHERE I LIVE WHERE THERE'S 6853 03:43:28,040 --> 03:43:29,600 JUST ONE GROCERY STORE WITHIN 30 6854 03:43:29,600 --> 03:43:31,800 MINUTES. 6855 03:43:31,800 --> 03:43:36,600 >>DID ANYBODY ELSE WANT TO ADD 6856 03:43:36,600 --> 03:43:37,560 TO THAT POINT ABOUT THE 6857 03:43:37,560 --> 03:43:38,000 BARRIERS? 6858 03:43:38,000 --> 03:43:39,000 BECAUSE I KNOW THAT CAME UP A 6859 03:43:39,000 --> 03:43:43,720 LOT IN OUR CONVERSATIONS AS 6860 03:43:43,720 --> 03:43:44,280 WELL, THAT WE'RE LOOKING AT 6861 03:43:44,280 --> 03:43:46,040 RURAL POPULATIONS OFTEN WHERE 6862 03:43:46,040 --> 03:43:47,440 THERE'S SOMETIMES LIMITED ACCESS 6863 03:43:47,440 --> 03:43:50,480 TO FOOD SOURCES AND VIVAINNETE, 6864 03:43:50,480 --> 03:43:54,040 I THINK YOU HAD -- 6865 03:43:54,040 --> 03:43:57,520 >> 6866 03:43:57,520 --> 03:44:08,000 [SPEAKING FOREIGN LANGUAGE] 6867 03:44:14,680 --> 03:44:17,720 >>HAVING ACCESS TO A VARIETY OF 6868 03:44:17,720 --> 03:44:20,360 PRODUCTS THAT ARE BETTER AND 6869 03:44:20,360 --> 03:44:22,080 LIVING ON AN ISLAND IS MORE 6870 03:44:22,080 --> 03:44:22,440 DIFFICULT. 6871 03:44:22,440 --> 03:44:25,040 SO I WOULD LIKE TO KNOW IN TERMS 6872 03:44:25,040 --> 03:44:27,800 OF WHAT I CAN DO SPECIFICALLY, 6873 03:44:27,800 --> 03:44:29,880 WHAT I SHOULD AVOID, WHAT I CAN 6874 03:44:29,880 --> 03:44:34,440 SUBSTITUTE AND USE IN ORDER TO 6875 03:44:34,440 --> 03:44:40,840 REDUCE EXPOSURE. 6876 03:44:40,840 --> 03:44:42,680 >>JADINE, DO YOU WANT TO TALK A 6877 03:44:42,680 --> 03:44:44,560 LITTLE BIT ABOUT THE KIND OF -- 6878 03:44:44,560 --> 03:44:45,680 THE FORMAT THAT WOULD BE MOST 6879 03:44:45,680 --> 03:44:49,720 USEFUL FOR YOU IN UNDERSTANDING 6880 03:44:49,720 --> 03:44:52,000 THIS INFORMATION, AND JUST TAKE 6881 03:44:52,000 --> 03:44:54,280 IT FROM THERE. 6882 03:44:54,280 --> 03:44:55,560 >>YES. 6883 03:44:55,560 --> 03:44:58,200 I FEEL THAT FOR ME PERSONALLY, I 6884 03:44:58,200 --> 03:44:59,960 WOULD PREFER TO HAVE A WEBSITE, 6885 03:44:59,960 --> 03:45:02,800 SOMETHING THAT I CAN GO AND LOOK 6886 03:45:02,800 --> 03:45:08,400 AT AND HAVE A SELECTION OF 6887 03:45:08,400 --> 03:45:10,080 INFORMATION THAT I CAN HAVE 6888 03:45:10,080 --> 03:45:11,760 ACCESS TO, AND IT WOULD BE IN 6889 03:45:11,760 --> 03:45:13,000 DEPTH AND I CAN READ ARTICLES, 6890 03:45:13,000 --> 03:45:16,520 THINGS THAT CAN HELP ME TO 6891 03:45:16,520 --> 03:45:18,160 CONNECT INFORMATION THAT I'M 6892 03:45:18,160 --> 03:45:19,440 RECEIVING FROM YOU GUYS. 6893 03:45:19,440 --> 03:45:22,320 I ALSO THINK THAT HAVING A 6894 03:45:22,320 --> 03:45:24,360 PHYSICAL COPY OF THE WEBSITE, 6895 03:45:24,360 --> 03:45:26,240 LIKE A NEWSLETTER, A PACKET, 6896 03:45:26,240 --> 03:45:28,000 SOMETHING LIKE THAT WITH THE 6897 03:45:28,000 --> 03:45:29,560 GRAPHS INCLUDED, I THINK THAT 6898 03:45:29,560 --> 03:45:31,800 WILL HELP PEOPLE WHO ARE NOT 6899 03:45:31,800 --> 03:45:33,520 TECH-SAVVY. 6900 03:45:33,520 --> 03:45:34,920 AND GOING OFF OF WHAT PAMELA 6901 03:45:34,920 --> 03:45:37,240 SAID, I THINK THAT VIDEOS ALSO 6902 03:45:37,240 --> 03:45:38,960 HELP AS WELL, BECAUSE NOT 6903 03:45:38,960 --> 03:45:41,640 EVERYONE HAS ACCESS TO INTERNET 6904 03:45:41,640 --> 03:45:43,840 AND, YOU KNOW, MAIL SYSTEM IS 6905 03:45:43,840 --> 03:45:46,280 CRAZY THESE DAYS, SO I THINK 6906 03:45:46,280 --> 03:45:49,680 THAT HAVING A VIDEO OR SOMETHING 6907 03:45:49,680 --> 03:45:52,160 THAT, YOU KNOW, THEY CAN HAVE 6908 03:45:52,160 --> 03:45:54,400 MULTIPLE ROUTES OF ACCESS TO, 6909 03:45:54,400 --> 03:45:57,200 YOU KNOW, WOULD BE BENEFICIAL TO 6910 03:45:57,200 --> 03:45:58,200 DIFFERENT KINDS OF 6911 03:45:58,200 --> 03:45:59,000 PERSONALITIES. 6912 03:45:59,000 --> 03:46:00,760 BECAUSE WE'RE NOT JUST LOOKING 6913 03:46:00,760 --> 03:46:02,080 AT HOW PEOPLE ARE GOING TO GET 6914 03:46:02,080 --> 03:46:03,240 THE INFORMATION, WE'RE LOOKING 6915 03:46:03,240 --> 03:46:05,560 AT HOW THEY ARE GOING TO RECEIVE 6916 03:46:05,560 --> 03:46:06,240 IT. 6917 03:46:06,240 --> 03:46:08,240 AND NOT JUST IN THE PHYSICAL 6918 03:46:08,240 --> 03:46:14,800 FOMPLFORM, BUT MENTALLY, HOW CAU 6919 03:46:14,800 --> 03:46:16,120 HELP US UNDERSTAND. 6920 03:46:16,120 --> 03:46:17,720 THANK YOU. 6921 03:46:17,720 --> 03:46:20,080 >>PUN INTENDED, I WANT TO ECHO 6922 03:46:20,080 --> 03:46:21,600 WHAT JADINE IS SAYING. 6923 03:46:21,600 --> 03:46:23,680 I THINK IT'S COME UP A FEW 6924 03:46:23,680 --> 03:46:24,720 TIMES, IT WOULD BE REALLY NICE 6925 03:46:24,720 --> 03:46:30,280 TO HAVE JUST A WEBSITE THAT HAS 6926 03:46:30,280 --> 03:46:31,800 RESOURCES THAT WE CAN GO TO. 6927 03:46:31,800 --> 03:46:33,200 IF YOU'VE GOTTEN THESE RESULTS 6928 03:46:33,200 --> 03:46:33,880 BACK, GO HERE. 6929 03:46:33,880 --> 03:46:37,200 AND I THINK IT CAN FEEL 6930 03:46:37,200 --> 03:46:38,400 BURDENSOME, LIKE WE'RE ASKING 6931 03:46:38,400 --> 03:46:39,400 FOR A LOT OF INFORMATION, BUT I 6932 03:46:39,400 --> 03:46:42,440 THINK YOU COULD ALSO USE US 6933 03:46:42,440 --> 03:46:44,880 MORE, SO LIKE FILM THOSE INFO 6934 03:46:44,880 --> 03:46:46,440 SESSIONS, RIGHT, WHERE YOU'RE 6935 03:46:46,440 --> 03:46:47,840 SAYING THE AUTHORITY AND THEN 6936 03:46:47,840 --> 03:46:48,800 GETTING THE QUESTIONS, THE Q & 6937 03:46:48,800 --> 03:46:50,480 A, AND THAT BECOMES YOUR 6938 03:46:50,480 --> 03:46:51,720 FREQUENTLY ASKED QUESTIONS 6939 03:46:51,720 --> 03:46:52,240 RESOURCE, RIGHT? 6940 03:46:52,240 --> 03:46:53,680 AND THEN IT'S NO MORE EFFORT 6941 03:46:53,680 --> 03:46:55,240 THAN YOU'VE ALREADY DONE. 6942 03:46:55,240 --> 03:46:56,760 AND SO I JUST WANT TO SAY, I 6943 03:46:56,760 --> 03:47:00,560 WOULD LIKE TO GO BACK AND 6944 03:47:00,560 --> 03:47:02,600 REFERENCE MORE OF NOT JUST, OH, 6945 03:47:02,600 --> 03:47:04,000 I GOT THIS INDIVIDUAL RESULT AND 6946 03:47:04,000 --> 03:47:05,320 THEN TWO YEARS LATER WITH MY 6947 03:47:05,320 --> 03:47:06,640 NEXT BABY I GOT THIS INDIVIDUAL 6948 03:47:06,640 --> 03:47:07,080 RESULT. 6949 03:47:07,080 --> 03:47:08,960 I'D LOVE TO BE ABLE TO COMPARE 6950 03:47:08,960 --> 03:47:10,480 THEM AND I JUST DON'T KEEP ALL 6951 03:47:10,480 --> 03:47:13,440 THE PAPERS, BUT LIKE TO HAVE 6952 03:47:13,440 --> 03:47:15,400 SOMETHING THAT WAS AN ONLINE 6953 03:47:15,400 --> 03:47:16,320 RESOURCE THAT'S THERE, I WOULD 6954 03:47:16,320 --> 03:47:20,080 ABSOLUTELY USE THAT. 6955 03:47:20,080 --> 03:47:20,600 >>EXCELLENT. 6956 03:47:20,600 --> 03:47:22,680 I'M GOING TO MOVE ON TO THE NEXT 6957 03:47:22,680 --> 03:47:24,160 ONE AND THEN WE'LL COME BACK TO 6958 03:47:24,160 --> 03:47:27,240 A COUPLE OF POINTS AT THE END. 6959 03:47:27,240 --> 03:47:32,720 SO THE NEXT QUESTION HAS MORE TO 6960 03:47:32,720 --> 03:47:34,000 DO WITH SOMETHING MORE ON THE 6961 03:47:34,000 --> 03:47:37,280 LINE OF A CLINICAL RESULT. 6962 03:47:37,280 --> 03:47:39,040 SO YOU RECEIVE A LETTER TELLING 6963 03:47:39,040 --> 03:47:42,400 YOU THAT A SCREENING OF YOUR 6964 03:47:42,400 --> 03:47:44,640 VERY YOUNG CHILD HAS SHOWNED 6965 03:47:44,640 --> 03:47:47,880 SOME SPECIFIC DEVELOPMENTAL 6966 03:47:47,880 --> 03:47:50,280 CATEGORIES WHERE YOUR CHILD WAS 6967 03:47:50,280 --> 03:47:50,800 UNDERPERFORMING CERTAIN 6968 03:47:50,800 --> 03:47:52,240 BENCHMARKS. 6969 03:47:52,240 --> 03:47:54,520 LETTERS SUGGEST THAT THERE ARE 6970 03:47:54,520 --> 03:47:55,880 SOME EARLY INTERVENTION SERVICES 6971 03:47:55,880 --> 03:47:57,120 THAT MIGHT HELP SO THAT YOUR 6972 03:47:57,120 --> 03:47:59,600 CHILD CAN CATCH UP, AND GIVES 6973 03:47:59,600 --> 03:48:01,040 YOU A REFERRAL TO ONE OF THOSE 6974 03:48:01,040 --> 03:48:03,240 PROGRAMS. 6975 03:48:03,240 --> 03:48:04,320 SO PAMELA, IF WE CAN START WITH 6976 03:48:04,320 --> 03:48:06,840 YOU ON THIS ONE, WHAT WOULD BE 6977 03:48:06,840 --> 03:48:09,040 YOUR PERSONAL REACTION TO 6978 03:48:09,040 --> 03:48:10,720 RECEIVING THOSE RESULTS, AND 6979 03:48:10,720 --> 03:48:12,360 WHAT WOULD BE AGAIN YOUR 6980 03:48:12,360 --> 03:48:14,360 IMMEDIATE QUESTIONS? 6981 03:48:14,360 --> 03:48:15,600 >>OKAY. 6982 03:48:15,600 --> 03:48:17,760 WELL, FORTUNATELY FOR THIS 6983 03:48:17,760 --> 03:48:23,440 QUESTION, I DID GET -- I DID GET 6984 03:48:23,440 --> 03:48:28,160 A LETTER STATING THAT PAISLEY 6985 03:48:28,160 --> 03:48:32,320 WAS DEVELOPMENTALLY DELAYED, AND 6986 03:48:32,320 --> 03:48:34,640 AT THAT POINT, JUST A -- FROM 6987 03:48:34,640 --> 03:48:35,840 THE CULTURAL ASPECT, WE'RE LIKE 6988 03:48:35,840 --> 03:48:38,920 OH, NO, SHE'S JUST CATCHING UP 6989 03:48:38,920 --> 03:48:40,360 WITH EVERYBODY, SHE WAS 6990 03:48:40,360 --> 03:48:41,720 PREMATURE, BUT WE DID START TO 6991 03:48:41,720 --> 03:48:44,280 NOTICE SENSORY ISSUES, WHICH 6992 03:48:44,280 --> 03:48:47,120 PERTAINED TO ACUTE AUTISM, AND 6993 03:48:47,120 --> 03:48:50,840 THEN ALONG THE LINES OF HER NOT 6994 03:48:50,840 --> 03:48:52,480 WALKING AT THE SAME TIME AS HER 6995 03:48:52,480 --> 03:48:54,960 AGE GROUP, SHE WAS STILL 6996 03:48:54,960 --> 03:48:56,920 UNBALANCED AND SO WITH THAT 6997 03:48:56,920 --> 03:48:59,520 SAID, I HAD A LOT OF QUESTIONS 6998 03:48:59,520 --> 03:49:01,360 BECAUSE I WAS THINKING WAS IT 6999 03:49:01,360 --> 03:49:03,080 SOMETHING THAT I DID, OR WAS IT 7000 03:49:03,080 --> 03:49:05,920 JUST BECAUSE SHE WAS PREMATURE, 7001 03:49:05,920 --> 03:49:08,480 AND THEN IN THAT SENSE, I 7002 03:49:08,480 --> 03:49:09,680 THOUGHT THAT, OKAY, I GOT THIS 7003 03:49:09,680 --> 03:49:11,760 LETTER FROM, YOU KNOW, ECHO, 7004 03:49:11,760 --> 03:49:14,560 FROM OUR EVALUATION, IS THERE 7005 03:49:14,560 --> 03:49:17,400 ANYTHING THAT YOU GUYS CAN GIVE 7006 03:49:17,400 --> 03:49:20,240 ME AS FAR AS FEEDBACK OR RAPPORT 7007 03:49:20,240 --> 03:49:22,240 ON IF WE WERE EXPOSED TO 7008 03:49:22,240 --> 03:49:23,120 ANYTHING, FOR INSTANCE, LIKE I 7009 03:49:23,120 --> 03:49:26,120 SAID I'VE HAD MY MOTHER WHO 7010 03:49:26,120 --> 03:49:28,880 PASSED AWAY FROM CANCER, MY 7011 03:49:28,880 --> 03:49:31,920 GRANDPA WHO PASSED AWAY FROM 7012 03:49:31,920 --> 03:49:33,840 CANCER BUT WE WERE IN EVERY, 7013 03:49:33,840 --> 03:49:35,600 EVER SPECIFIED ON IF WE WERE 7014 03:49:35,600 --> 03:49:37,080 EXPOSED TO URANIUM BECAUSE WE 7015 03:49:37,080 --> 03:49:38,760 ALL STILL LIVE IN THE SAME AREA. 7016 03:49:38,760 --> 03:49:44,760 THERE ARE OTHER INSTANCES AS FAR 7017 03:49:44,760 --> 03:49:46,800 AS OUR HEALTH FOR MY DAUGHTER 7018 03:49:46,800 --> 03:49:48,960 AND MYSELF AND THIS IS ALL VERY, 7019 03:49:48,960 --> 03:49:50,960 VERY NEW, WITHIN THE LAST SIX 7020 03:49:50,960 --> 03:49:52,600 YEARS FOR US. 7021 03:49:52,600 --> 03:49:57,120 SO IN THAT SENSE, I WAS VERY 7022 03:49:57,120 --> 03:49:59,080 FORTUNATE THAT MY BIRTH COHORT 7023 03:49:59,080 --> 03:50:01,560 PROGRAM CAME BACK AND OFFERED A 7024 03:50:01,560 --> 03:50:05,160 REFERRAL TO EARLY CHILDHOOD 7025 03:50:05,160 --> 03:50:06,560 INTERVENTION. 7026 03:50:06,560 --> 03:50:09,960 PAISLEY DID GRADUATE FROM A 7027 03:50:09,960 --> 03:50:11,920 LOCAL FACE PROGRAM AND SHE IS 7028 03:50:11,920 --> 03:50:12,720 CURRENTLY IN PRESCHOOL AND IS 7029 03:50:12,720 --> 03:50:15,280 NOT YET AT HER CLASS BUT SHE'S 7030 03:50:15,280 --> 03:50:16,800 WALKING ALL ON HER OWN NOW, 7031 03:50:16,800 --> 03:50:18,040 SHE'S RIDING A BIKE, SHE EVEN 7032 03:50:18,040 --> 03:50:19,800 RIDES A LITTLE SCOOTER AROUND, 7033 03:50:19,800 --> 03:50:22,960 AND THEN SHE TALKS TOO MUCH NOW. 7034 03:50:22,960 --> 03:50:24,760 BEFORE SHE WAS NON-VERBAL. 7035 03:50:24,760 --> 03:50:28,400 BUT NOW SHE WANTS TO REPEAT 7036 03:50:28,400 --> 03:50:28,920 EVERYTHING EVERYBODY SAYS. 7037 03:50:28,920 --> 03:50:30,680 SO IN THAT SENSE, WE ARE VERY 7038 03:50:30,680 --> 03:50:31,880 FORTUNATE AND GRATEFUL THAT THE 7039 03:50:31,880 --> 03:50:33,840 BIRTH COHORT PROGRAM HAD GIVEN 7040 03:50:33,840 --> 03:50:35,280 US THOSE RESOURCES BECAUSE 7041 03:50:35,280 --> 03:50:37,240 OTHERWISE WE WOULD HAVE BEEN 7042 03:50:37,240 --> 03:50:38,840 REACHING OUT FOR THOSE SERVICES 7043 03:50:38,840 --> 03:50:40,360 ON OUR OWN AND THEN IT WOULD 7044 03:50:40,360 --> 03:50:44,560 HAVE BEEN OUT OF POCKET PAY. 7045 03:50:44,560 --> 03:50:47,200 BECAUSE WE WERE ALL THE WAY UP 7046 03:50:47,200 --> 03:50:49,480 TO PHILADELPHIA FOR -- AS FAR AS 7047 03:50:49,480 --> 03:50:50,800 HER AUTISM STUFF, WHICH IS 7048 03:50:50,800 --> 03:50:54,360 AMAZING. 7049 03:50:54,360 --> 03:50:57,080 >>VIVAINNETE, IF YOU HAD 7050 03:50:57,080 --> 03:50:59,520 RESULTS LIKE THAT, WHAT WOULD 7051 03:50:59,520 --> 03:51:03,200 YOU LIKE FOR HOW THEY'RE 7052 03:51:03,200 --> 03:51:04,400 COMPARED, SO SORT OF THE SAME 7053 03:51:04,400 --> 03:51:05,640 QUESTION WE HAD FOR THE CHEMICAL 7054 03:51:05,640 --> 03:51:09,840 RESULTS BUT NOW WITH A MEDICAL 7055 03:51:09,840 --> 03:51:19,960 CONTEXT? 7056 03:51:25,040 --> 03:51:25,960 >> 7057 03:51:25,960 --> 03:51:36,440 [SPEAKING FOREIGN LANGUAGE] 7058 03:51:50,320 --> 03:51:52,120 >>JUST A SECOND SO I CAN START. 7059 03:51:52,120 --> 03:51:53,800 NOW I'M GOING TO FORGET. 7060 03:51:53,800 --> 03:51:54,480 FIRST I WOULD LIKE TO KNOW WHAT 7061 03:51:54,480 --> 03:51:57,440 IS THE STANDARD FOR DEVELOPMENT 7062 03:51:57,440 --> 03:51:58,000 AT THAT MOMENT. 7063 03:51:58,000 --> 03:52:00,080 I WOULD ALSO LIKE TO RECEIVE THE 7064 03:52:00,080 --> 03:52:01,200 INFORMATION IN A FORMAT THAT I 7065 03:52:01,200 --> 03:52:02,400 COULD UNDERSTAND AND I CAN TAKE 7066 03:52:02,400 --> 03:52:03,720 TO A CLINICIAN. 7067 03:52:03,720 --> 03:52:09,560 TO GET MORE HELP. 7068 03:52:09,560 --> 03:52:11,000 AND WHAT RESOURCES ARE AVAILABLE 7069 03:52:11,000 --> 03:52:21,280 SO THAT I CAN HELP MY CHILD. 7070 03:52:21,280 --> 03:52:23,280 >>JADINE, IF YOU RECEIVED A 7071 03:52:23,280 --> 03:52:24,240 REFERRAL, AND I KNOW YOU DON'T 7072 03:52:24,240 --> 03:52:27,960 HAVE A CHILD YET, BUT IF THIS 7073 03:52:27,960 --> 03:52:29,600 CAME FOR YOU WITH A REFERRAL, 7074 03:52:29,600 --> 03:52:32,080 WOULD YOU TAKE ADVANTAGE OF THAT 7075 03:52:32,080 --> 03:52:33,280 REFERRAL AND CAN YOU THINK OF 7076 03:52:33,280 --> 03:52:34,800 SOME BARRIERS THAT MIGHT MAKE 7077 03:52:34,800 --> 03:52:38,800 YOU NOT WANT TO GO TO TAKE 7078 03:52:38,800 --> 03:52:40,080 ADVANTAGE OF THE CLINICAL 7079 03:52:40,080 --> 03:52:42,360 REFERRAL? 7080 03:52:42,360 --> 03:52:45,000 >>YES, AS YOU STATED, I DON'T 7081 03:52:45,000 --> 03:52:46,240 HAVE ANY KIDS. 7082 03:52:46,240 --> 03:52:49,040 THEY SEEM LIKE A LOT OF WORK. 7083 03:52:49,040 --> 03:52:51,560 SO IF I WERE TO BE A PARENT, I 7084 03:52:51,560 --> 03:52:53,920 WOULD WANT TO TAKE ADVANTAGE OF 7085 03:52:53,920 --> 03:52:58,280 THAT REFERRAL BECAUSE AT THAT 7086 03:52:58,280 --> 03:52:59,160 POINT, IT WOULD BE THE ONLY 7087 03:52:59,160 --> 03:53:00,720 SOURCE OF HELP THAT I HAVE 7088 03:53:00,720 --> 03:53:01,840 OUTSIDE OF THE STUDY. 7089 03:53:01,840 --> 03:53:04,000 SO I WOULD TAKE ADVANTAGE OF 7090 03:53:04,000 --> 03:53:07,560 THAT, BUT BARRIERS THAT I CAN 7091 03:53:07,560 --> 03:53:09,200 SEE IS, YOU KNOW, THE POTENTIAL 7092 03:53:09,200 --> 03:53:10,960 OF THAT NOT WORKING OUT AND 7093 03:53:10,960 --> 03:53:13,120 YOU'D COME BACK TO SQUARE ONE 7094 03:53:13,120 --> 03:53:15,480 WITH NEEDING ANOTHER REFERRAL OR 7095 03:53:15,480 --> 03:53:18,320 ANOTHER SOURCE OF INFORMATION TO 7096 03:53:18,320 --> 03:53:21,080 HELP, SO I WOULD SAY THE BARRIER 7097 03:53:21,080 --> 03:53:23,320 WOULD BE GETTING STUCK AT THE 7098 03:53:23,320 --> 03:53:25,480 SAME SPOT THAT YOU STARTED, SO I 7099 03:53:25,480 --> 03:53:27,000 WOULD SAY OR SUGGEST THAT, YOU 7100 03:53:27,000 --> 03:53:30,560 KNOW, HAVE MULTIPLE REFERRALS IF 7101 03:53:30,560 --> 03:53:33,160 YOU CAN, OR OBVIOUS ONES WOULD 7102 03:53:33,160 --> 03:53:35,680 BE LIKE TRANSPORTATION AND 7103 03:53:35,680 --> 03:53:37,000 FUNDING, WHETHER IT'S COMING OUT 7104 03:53:37,000 --> 03:53:39,360 OF THE POCKET PERSONALLY OR IF 7105 03:53:39,360 --> 03:53:44,160 IT'S, YOU KNOW, JUST A MATTER OF 7106 03:53:44,160 --> 03:53:46,800 HOW MUCH MONEY YOU NEED FOR THE 7107 03:53:46,800 --> 03:53:49,800 WHOLE THING TO, YOU KNOW, WORK 7108 03:53:49,800 --> 03:53:51,880 AND BE SMOOTH. 7109 03:53:51,880 --> 03:53:57,240 OUTSIDE OF THAT, I THINK IT'S A 7110 03:53:57,240 --> 03:53:58,880 GOOD THING TO REFER HELP FOR 7111 03:53:58,880 --> 03:54:00,160 PARENTS WHO FEEL HELPLESS. 7112 03:54:00,160 --> 03:54:04,080 THANK YOU CH 7113 03:54:04,080 --> 03:54:06,280 >>AND EMILY. 7114 03:54:06,280 --> 03:54:08,000 WHO WOULD YOU WANT TO -- THIS IS 7115 03:54:08,000 --> 03:54:11,880 SORT OF SENSITIVE INFORMATION, 7116 03:54:11,880 --> 03:54:15,840 AND WHO WOULD YOU WARRANT TO WAO 7117 03:54:15,840 --> 03:54:16,480 DELIVER THAT INFORMATION TO YOU 7118 03:54:16,480 --> 03:54:20,920 AND WHY? 7119 03:54:20,920 --> 03:54:22,560 >>I THINK THE THING I KEEP 7120 03:54:22,560 --> 03:54:24,760 COMING BAB TO IS THE PEOPLE THAT 7121 03:54:24,760 --> 03:54:25,840 RECRUITED ME INTO THIS STUDY, I 7122 03:54:25,840 --> 03:54:26,760 HAVE A FACE ASSOCIATED WITH 7123 03:54:26,760 --> 03:54:27,200 THEM. 7124 03:54:27,200 --> 03:54:32,680 IF I WOS GET I WAS GETTING DIFF, 7125 03:54:32,680 --> 03:54:34,320 I WOULD LOVE TO GET IT FROM 7126 03:54:34,320 --> 03:54:35,000 THEM. 7127 03:54:35,000 --> 03:54:36,480 WHICH IS NOT WHAT YOU SIGNED UP 7128 03:54:36,480 --> 03:54:38,960 FOR AS A RESEARCHER BUT IT IS 7129 03:54:38,960 --> 03:54:42,320 JUST SO MUCH MORE HELPFUL TO 7130 03:54:42,320 --> 03:54:43,320 CONTEXTUALIZE AND BE ABLE TO ASK 7131 03:54:43,320 --> 03:54:43,680 QUESTIONS. 7132 03:54:43,680 --> 03:54:47,400 YOU KNOW, WHEN YOU HA GET A LETR 7133 03:54:47,400 --> 03:54:48,600 IN THE MAIL THAT HAS BAD NEWS ON 7134 03:54:48,600 --> 03:54:49,880 IT IT'S JUST THAT SINKING 7135 03:54:49,880 --> 03:54:51,120 FEELING VERSUS IF YOU HAVE 7136 03:54:51,120 --> 03:54:52,440 SOMEONE WHO'S DELIVERING THAT 7137 03:54:52,440 --> 03:54:54,000 AND A SAYING HERE'S ALL THESE 7138 03:54:54,000 --> 03:54:55,440 OTHER THINGS THAT WE CAN DO, YOU 7139 03:54:55,440 --> 03:54:57,720 KNOW, WE HAVE THESE SAFETY NETS 7140 03:54:57,720 --> 03:55:02,240 HERE TO HELP, IT DOES MAKE IT A 7141 03:55:02,240 --> 03:55:05,000 LOT MORE BEARABLE TO GET THAT 7142 03:55:05,000 --> 03:55:06,080 NEWS, BUT ALSO YOU'VE TALKED 7143 03:55:06,080 --> 03:55:07,240 ABOUT RETENTION. 7144 03:55:07,240 --> 03:55:08,240 ABSOLUTELY, I WOULD CONTINUE 7145 03:55:08,240 --> 03:55:09,520 COMING BACK TO A STUDY THAT 7146 03:55:09,520 --> 03:55:11,680 TREATED ME LIKE A PERSON AND 7147 03:55:11,680 --> 03:55:14,080 THAT I KNOW YOU WANT TO HELP ME. 7148 03:55:14,080 --> 03:55:14,600 YEAH. 7149 03:55:14,600 --> 03:55:21,520 THAT WOULD HELP RETAIN ME FOR 7150 03:55:21,520 --> 03:55:21,760 SURE. 7151 03:55:21,760 --> 03:55:23,520 >>I LIKE THAT YOU ADDED TO THAT 7152 03:55:23,520 --> 03:55:25,160 THAT IT WOULD BE ALONG WITH 7153 03:55:25,160 --> 03:55:26,160 OTHER STEPS THAT YOU COULD TAKE 7154 03:55:26,160 --> 03:55:28,240 AND OTHER RESOURCES THAT WOULD 7155 03:55:28,240 --> 03:55:28,600 BE AVAILABLE. 7156 03:55:28,600 --> 03:55:30,920 AND WHEN WE HAD OUR EARLIER 7157 03:55:30,920 --> 03:55:31,600 DISCUSSIONS, THIS IS SOMETHING 7158 03:55:31,600 --> 03:55:35,400 THAT CAME OUT FROM EVERYBODY. 7159 03:55:35,400 --> 03:55:37,040 THE PARTY THAT IS MOST TRUSTED 7160 03:55:37,040 --> 03:55:40,080 AT THIS POINT IS THE ACTUAL ONE 7161 03:55:40,080 --> 03:55:42,000 ON ONE CONTACT THAT'S BEEN 7162 03:55:42,000 --> 03:55:44,680 COLLECTING DATA FOR UP TO 20 7163 03:55:44,680 --> 03:55:46,320 YEARS, AND LET PEOPLE KNOW, AND 7164 03:55:46,320 --> 03:55:52,120 THEY MAY NOT BE THE CLINICAL 7165 03:55:52,120 --> 03:55:54,400 EXPERT, BUT TO HAVE THAT 7166 03:55:54,400 --> 03:55:56,440 INTERFACE AND THAT PROCESS OF 7167 03:55:56,440 --> 03:55:57,600 CONNECTION WITH OTHER RESOURCES 7168 03:55:57,600 --> 03:56:03,600 WAS BROUGHT UP BY EVERYBODY IS 7169 03:56:03,600 --> 03:56:04,520 REALLY IMPORTANT. 7170 03:56:04,520 --> 03:56:06,200 DOES ANYONE WANT TO ADD TO THAT? 7171 03:56:06,200 --> 03:56:07,280 GO AHEAD, JADINE. 7172 03:56:07,280 --> 03:56:09,240 >>IN ADDITION, I THINK THAT 7173 03:56:09,240 --> 03:56:10,440 BEING -- GIVEN INFORMATION BY 7174 03:56:10,440 --> 03:56:13,840 SOMEONE WHO'S TRUSTED, I HAVE A 7175 03:56:13,840 --> 03:56:15,560 FACE TO A NAME AS WELL, AND I 7176 03:56:15,560 --> 03:56:19,280 APPRECIATE HER GREATLY. 7177 03:56:19,280 --> 03:56:22,000 I THINK THAT GETTING INFORMATION 7178 03:56:22,000 --> 03:56:22,960 BACK FROM SOMEONE THAT YOU 7179 03:56:22,960 --> 03:56:26,640 TRUST, IT HELPS BUILD A GREAT 7180 03:56:26,640 --> 03:56:27,760 RELATIONSHIP FIRST AND IT KEEPS 7181 03:56:27,760 --> 03:56:29,520 THE PARTICIPANT WANTING TO COME 7182 03:56:29,520 --> 03:56:30,640 BACK, AND I ALSO THINK THAT 7183 03:56:30,640 --> 03:56:32,280 HAVING SOMEONE GIVE YOU 7184 03:56:32,280 --> 03:56:34,160 INFORMATION EVERY TIME THAT YOU 7185 03:56:34,160 --> 03:56:36,240 HAVE INFORMATION TO, LIKE, YOU 7186 03:56:36,240 --> 03:56:37,240 KNOW, RECEIVE, WHETHER IT'S GOOD 7187 03:56:37,240 --> 03:56:39,640 OR BAD, I THINK THAT IT'S BEEN 7188 03:56:39,640 --> 03:56:40,880 FICIAL TO THE RELATIONSHIP AND 7189 03:56:40,880 --> 03:56:45,200 TO THE STUDY BECAUSE IT BUILDS A 7190 03:56:45,200 --> 03:56:46,400 STRONG FOUNDATION OF TRUST THAT 7191 03:56:46,400 --> 03:56:47,920 YOU KNOW YOU'RE GOING TO GET 7192 03:56:47,920 --> 03:56:49,880 YOUR INFORMATION BACK, 7193 03:56:49,880 --> 03:56:51,360 REGARDLESS OF -- IT MAY BE SCARY 7194 03:56:51,360 --> 03:56:53,480 TO HEAR OR YOU HAVE SOMEONE THAT 7195 03:56:53,480 --> 03:56:57,520 YOU TRUST TO LET THOSE OPINIONS 7196 03:56:57,520 --> 03:56:59,200 AND EMOTIONS OUT BASED ON WHAT 7197 03:56:59,200 --> 03:57:02,760 INFORMATION YOU'VE BEEN GIVEN. 7198 03:57:02,760 --> 03:57:03,360 >>IMPORTANT POINTS. 7199 03:57:03,360 --> 03:57:05,000 THANK YOU. 7200 03:57:05,000 --> 03:57:05,360 OKAY. 7201 03:57:05,360 --> 03:57:08,800 WE'RE MOVING ON TO NOW ONE THAT 7202 03:57:08,800 --> 03:57:11,600 IS MORE BEHAVIORAL, AND ON A 7203 03:57:11,600 --> 03:57:13,480 VERY INDIVIDUAL LEVEL. 7204 03:57:13,480 --> 03:57:14,880 SO YOU RECEIVE RESULTS FROM 7205 03:57:14,880 --> 03:57:16,400 SLEEP MONITORING THAT WAS DONE 7206 03:57:16,400 --> 03:57:22,080 ON YOUR CHILD OR YOURSELF AND 7207 03:57:22,080 --> 03:57:23,600 YOU FIND OUT THE AMOUNT OR 7208 03:57:23,600 --> 03:57:24,880 QUALITY OF SLEEP IS WELL BELOW 7209 03:57:24,880 --> 03:57:28,360 WHAT RESEARCHERS AND CLINICIANS 7210 03:57:28,360 --> 03:57:29,520 RECOMMEND IS NECESSARY. 7211 03:57:29,520 --> 03:57:30,680 YOU'RE ALSO GIVEN RESULTS FROM 7212 03:57:30,680 --> 03:57:32,400 AN ECHO-WIDE STUDY THAT SHOW 7213 03:57:32,400 --> 03:57:33,600 THAT BETTER SLEEP QUALITY IS 7214 03:57:33,600 --> 03:57:34,920 LINKED TO LOWER LEVELS OF STRESS 7215 03:57:34,920 --> 03:57:37,240 AND BETTER GENERAL HEALTH, AND 7216 03:57:37,240 --> 03:57:39,640 HIGHER LEVELS OF SATISFACTION. 7217 03:57:39,640 --> 03:57:41,800 SO IN THIS CASE, WHAT WOULD BE 7218 03:57:41,800 --> 03:57:45,560 YOUR PERSONAL REACTION? 7219 03:57:45,560 --> 03:57:48,440 AND THIS IS FOR JADINE. 7220 03:57:48,440 --> 03:57:50,160 AND WHAT WOULD BE YOUR IMMEDIATE 7221 03:57:50,160 --> 03:57:50,960 OTHER QUESTIONS THAT YOU WOULD 7222 03:57:50,960 --> 03:57:52,040 WANT TO MAKE SURE CAME ALONG 7223 03:57:52,040 --> 03:57:54,880 WITH THAT? 7224 03:57:54,880 --> 03:57:56,440 >>BEING A COLLEGE STUDENT AND A 7225 03:57:56,440 --> 03:57:58,120 FULL TIME WORKER, I AM PRETTY 7226 03:57:58,120 --> 03:58:00,120 SURE I MIGHT BE ON THAT 7227 03:58:00,120 --> 03:58:00,560 SPECTRUM. 7228 03:58:00,560 --> 03:58:02,360 [LAUGHTER] 7229 03:58:02,360 --> 03:58:03,560 BUT MY PERSONAL REACTION WOULD 7230 03:58:03,560 --> 03:58:06,080 BE, I WOULD BE CURIOUS AS TO 7231 03:58:06,080 --> 03:58:07,680 WHAT IS CONSIDERED TO BE NORMAL 7232 03:58:07,680 --> 03:58:10,160 IN THE EYES OF ECHO OR, YOU 7233 03:58:10,160 --> 03:58:13,320 KNOW, OTHER SURROUNDING COHORTS. 7234 03:58:13,320 --> 03:58:15,440 MY QUESTION WOULD BE, IS THIS 7235 03:58:15,440 --> 03:58:17,680 JUST BASED OFF OF MY LIFE 7236 03:58:17,680 --> 03:58:18,800 EXPERIENCE, LIKE, YOU KNOW, 7237 03:58:18,800 --> 03:58:20,440 THINGS THAT I'M ALREADY INVOLVED 7238 03:58:20,440 --> 03:58:23,840 IN, OR THIS IS SOMETHING THAT'S 7239 03:58:23,840 --> 03:58:26,520 GENETIC, LIKE, YOU KNOW, YOUR 7240 03:58:26,520 --> 03:58:28,400 FAMILY IS PREDISPOSED TO LACK OF 7241 03:58:28,400 --> 03:58:30,480 SLEEP BECAUSE OF CERTAIN 7242 03:58:30,480 --> 03:58:32,760 STRESSORS THAT YOU'VE BEEN 7243 03:58:32,760 --> 03:58:35,320 INTRODUCED TO, AND STRESS ORS 7244 03:58:35,320 --> 03:58:37,640 ARE GENERATIONAL, SO THINGS YOU 7245 03:58:37,640 --> 03:58:39,280 SEE CAN OFTEN BE ADOPTED, SO I 7246 03:58:39,280 --> 03:58:40,880 WOULD WANT TO KNOW HOW MUCH DOES 7247 03:58:40,880 --> 03:58:42,080 THE ENVIRONMENT HAVE AN EFFECT 7248 03:58:42,080 --> 03:58:44,160 ON MY SLEEPING. 7249 03:58:44,160 --> 03:58:45,000 YEAH. 7250 03:58:45,000 --> 03:58:46,600 I THINK -- DID I ANSWER THE 7251 03:58:46,600 --> 03:58:46,840 QUESTION? 7252 03:58:46,840 --> 03:58:48,280 OKAY. 7253 03:58:48,280 --> 03:58:53,960 >>THAT BROUGHT UP A COUPLE OF 7254 03:58:53,960 --> 03:58:55,400 OTHER POINTS IN TERMS OF THE 7255 03:58:55,400 --> 03:58:57,200 CONTEXT, AND THINKING ABOUT THAT 7256 03:58:57,200 --> 03:58:58,600 WHAT COMMUNITY THINGS GET 7257 03:58:58,600 --> 03:59:00,920 COMPARED TO, AND IS IT THE 7258 03:59:00,920 --> 03:59:03,480 PHYSICAL COMMUNITY, IS IT THE 7259 03:59:03,480 --> 03:59:06,120 LARGER CONTEXT OF SOME 7260 03:59:06,120 --> 03:59:08,320 PARTICULAR CATEGORY THAT YOU ARE 7261 03:59:08,320 --> 03:59:10,600 PART. 7262 03:59:10,600 --> 03:59:12,920 THAT'S GOOD. 7263 03:59:12,920 --> 03:59:14,960 EMILY, WHAT WOULD YOU THINK 7264 03:59:14,960 --> 03:59:15,800 ABOUT REFERENCE INFORMATION TO 7265 03:59:15,800 --> 03:59:17,560 HELP YOU UNDERSTAND THESE 7266 03:59:17,560 --> 03:59:19,880 RESULTS? 7267 03:59:19,880 --> 03:59:24,120 >>MY THOUGHT WHEN I READ THIS 7268 03:59:24,120 --> 03:59:25,280 QUESTION WAS I WOULD LOVE TO SEE 7269 03:59:25,280 --> 03:59:26,240 KIND OF WHERE I FALL IN THE 7270 03:59:26,240 --> 03:59:29,920 RANGE OF NORMAL, OR MY CHILD, 7271 03:59:29,920 --> 03:59:32,080 AND BASICALLY WHERE SHOULD I BE, 7272 03:59:32,080 --> 03:59:32,880 YOU KNOW? 7273 03:59:32,880 --> 03:59:34,520 I'M PICTURING THIS LINE GRAPH 7274 03:59:34,520 --> 03:59:35,840 WHERE IT'S LIKE YOU'RE HERE AND 7275 03:59:35,840 --> 03:59:37,560 YOU WANT TO GO HERE, AND THAT 7276 03:59:37,560 --> 03:59:38,720 WOULD HELP ME TO KIND OF SEE, 7277 03:59:38,720 --> 03:59:40,400 ALL RIGHT, I HAVE A GOAL OF WHAT 7278 03:59:40,400 --> 03:59:44,200 I NEED TO MOVE TOWARD, AND 7279 03:59:44,200 --> 03:59:44,920 AGAIN, IT WOULD BE GREAT TO GET 7280 03:59:44,920 --> 03:59:46,280 SOME RESOURCES TO HELP, LIKE, 7281 03:59:46,280 --> 03:59:48,680 HOW DO I GET MORE SLEEP OR HELP 7282 03:59:48,680 --> 03:59:51,000 MY CHILDREN GET MORE SLEEP, WHAT 7283 03:59:51,000 --> 03:59:52,600 ARE SOME -- BECAUSE I CAN BE 7284 03:59:52,600 --> 03:59:55,000 MOTIVATED, RIGHT, BUT BY THE 7285 03:59:55,000 --> 03:59:57,000 RESULTS BUT THE TACTICS OF HOW 7286 03:59:57,000 --> 03:59:59,320 DO I CHANGE IT WOULD BE REALLY 7287 03:59:59,320 --> 04:00:04,040 HELPFUL TO HAVE. 7288 04:00:04,040 --> 04:00:07,280 >>AN 7289 04:00:07,280 --> 04:00:09,120 >>AND PAMELA, WHAT WOULD YOU 7290 04:00:09,120 --> 04:00:10,200 ENVISION CHANGING IF YOU GOT 7291 04:00:10,200 --> 04:00:11,840 RESULTS LIKE THIS AND WHAT 7292 04:00:11,840 --> 04:00:12,720 ADDITIONAL INFORMATION WOULD YOU 7293 04:00:12,720 --> 04:00:14,520 NEED AND, AGAIN, WHAT BARRIERS 7294 04:00:14,520 --> 04:00:17,440 MIGHT YOU SEE? 7295 04:00:17,440 --> 04:00:19,320 >>I'LL JUST START OFF WITH MY 7296 04:00:19,320 --> 04:00:20,720 APPEARANCE TODAY HAS TO DO WITH 7297 04:00:20,720 --> 04:00:23,680 MY SLEEP STUDY. 7298 04:00:23,680 --> 04:00:28,360 BEING A MOM, AND I DO HAVE MY 7299 04:00:28,360 --> 04:00:30,520 OWN -- MY OWN SIDE -- MY OWN 7300 04:00:30,520 --> 04:00:33,400 LITTLE SIDE BUSINESS, I SLEEP 7301 04:00:33,400 --> 04:00:36,120 MAYBE TWO TO THREE HOURS A 7302 04:00:36,120 --> 04:00:38,400 NIGHT. 7303 04:00:38,400 --> 04:00:39,120 SOMETIMES. 7304 04:00:39,120 --> 04:00:40,000 AND THEN THAT CORRELATED ALSO 7305 04:00:40,000 --> 04:00:42,280 WITH MY DAUGHTER BEING -- I 7306 04:00:42,280 --> 04:00:43,840 DON'T KNOW WHAT IT IS BUT WE 7307 04:00:43,840 --> 04:00:46,440 HAVE THESE PHASES OF WHERE SHE 7308 04:00:46,440 --> 04:00:49,720 WANTS TO BE UP ALL DAY, SLEEP 7309 04:00:49,720 --> 04:00:52,120 FROM 5:00 TO 7:00 AND THEN BE UP 7310 04:00:52,120 --> 04:00:53,160 HALF THE NIGHT. 7311 04:00:53,160 --> 04:00:59,000 SO IN THAT SENSE, I SAID WHAT 7312 04:00:59,000 --> 04:01:00,960 ARE WE GOING TO DO ABOUT THIS 7313 04:01:00,960 --> 04:01:02,600 AND WHERE ARE WE GOING TO GO 7314 04:01:02,600 --> 04:01:03,760 ABOUT THIS AND MY HUSBAND 7315 04:01:03,760 --> 04:01:04,760 BROUGHT UP, ARE THEY GOING TO 7316 04:01:04,760 --> 04:01:05,600 GET US A NEW BED? 7317 04:01:05,600 --> 04:01:07,560 I WAS LIKE, NO. 7318 04:01:07,560 --> 04:01:09,840 BUT YOU KNOW, IN THAT SENSE, IT 7319 04:01:09,840 --> 04:01:11,720 DOES CORRELATE WITH ANOTHER ONE 7320 04:01:11,720 --> 04:01:14,440 OF MY DIAGNOSES, WHICH IS 7321 04:01:14,440 --> 04:01:14,760 FIBROMYALGIA. 7322 04:01:14,760 --> 04:01:17,120 I DON'T GET SLEEP, MY BODY WILL 7323 04:01:17,120 --> 04:01:20,320 BE INFLAMED FOR DAYS. 7324 04:01:20,320 --> 04:01:22,880 SO ONE THING THAT I HAD TO DO 7325 04:01:22,880 --> 04:01:27,800 WAS A RESOURCE THAT WAS ADDED TO 7326 04:01:27,800 --> 04:01:32,400 US IS TO -- WITH MY DAUGHTER'S 7327 04:01:32,400 --> 04:01:34,400 OCCUPATIONAL THERAPIST WAS FOR 7328 04:01:34,400 --> 04:01:37,400 US TO TRAIN OURSELVES, PUT 7329 04:01:37,400 --> 04:01:39,040 OURSELVES ON A TIME SCHEDULE AND 7330 04:01:39,040 --> 04:01:39,360 WHATNOT. 7331 04:01:39,360 --> 04:01:41,360 SO THAT WAS ONE OF THE RESOURCES 7332 04:01:41,360 --> 04:01:42,360 THAT WE WERE ACTUALLY OFFERED BY 7333 04:01:42,360 --> 04:01:45,200 THE BIRTH COHORT STUDY. 7334 04:01:45,200 --> 04:01:47,280 SO JUST LIKE JADINE SAID, I'D 7335 04:01:47,280 --> 04:01:49,440 LIKE TO SHOUT OUT TO OUR NAVAJO 7336 04:01:49,440 --> 04:01:50,400 NATION STUDY BECAUSE THOSE 7337 04:01:50,400 --> 04:01:51,720 LADIES ARE ON IT. 7338 04:01:51,720 --> 04:01:53,320 WE CAN DO THIS, WE CAN REFER YOU 7339 04:01:53,320 --> 04:01:55,880 TO THESE GUYS, SO THAT'S ONE 7340 04:01:55,880 --> 04:01:57,240 THING THAT WE'RE GRATEFUL FOR 7341 04:01:57,240 --> 04:02:02,760 FROM THE PROGRAM. 7342 04:02:02,760 --> 04:02:04,560 >>JUST FULL DISCLOSURE, I DID 7343 04:02:04,560 --> 04:02:06,960 NOT PUT HER UP TO THIS. 7344 04:02:06,960 --> 04:02:09,600 I DON'T THINK I EVER IDENTIFIED 7345 04:02:09,600 --> 04:02:10,840 BUT I'M THE P.I. OF THE -- I WAS 7346 04:02:10,840 --> 04:02:12,480 THE ORIGINAL P.I. OF THE BIRTH 7347 04:02:12,480 --> 04:02:16,200 COHORT STUDY. 7348 04:02:16,200 --> 04:02:20,520 SO TOTAL -- JUST -- WHATEVER. 7349 04:02:20,520 --> 04:02:22,160 VIVAINNETE, WHAT FORMAT WOULD BE 7350 04:02:22,160 --> 04:02:24,840 THE MOST USEFUL FOR YOU IN TERMS 7351 04:02:24,840 --> 04:02:25,840 OF UNDERSTANDING THIS KIND OF 7352 04:02:25,840 --> 04:02:30,640 INFORMATION? 7353 04:02:30,640 --> 04:02:31,280 ?REUSH 7354 04:02:31,280 --> 04:02:41,760 [SPEAKING FOREIGN LANGUAGE] 7355 04:02:43,680 --> 04:02:44,840 >>ALWAYS POSSIBLE, ALL KINDS OF 7356 04:02:44,840 --> 04:02:46,760 FORMATS WOULD BE WELCOME. 7357 04:02:46,760 --> 04:02:49,280 ESPECIALLY TO HAVE ACCESS TO A 7358 04:02:49,280 --> 04:02:51,000 WEBPAGE WHERE I CAN GET THE 7359 04:02:51,000 --> 04:03:01,200 INFORMATION. 7360 04:03:09,560 --> 04:03:11,560 >>MY EXPERIENCE OF GETTING MY 7361 04:03:11,560 --> 04:03:13,520 REPORT BACK IN A GROUP WITH 7362 04:03:13,520 --> 04:03:15,560 OTHER PARTICIPANTS IS VERY 7363 04:03:15,560 --> 04:03:18,280 HELPFUL BECAUSE WE CAN SHARE, WE 7364 04:03:18,280 --> 04:03:19,920 ARE IN THE SAME BOAT SO TO SPEAK 7365 04:03:19,920 --> 04:03:22,560 AND CAN LOOK FOR NEW SOLUTIONS 7366 04:03:22,560 --> 04:03:32,720 TOGETHER. 7367 04:03:33,520 --> 04:03:35,960 IN THE GROUP FORMAT, WE DON'T 7368 04:03:35,960 --> 04:03:37,720 DISCUSS MY RESULTS DIRECTLY OR, 7369 04:03:37,720 --> 04:03:40,520 YOU KNOW, PUBLICLY. 7370 04:03:40,520 --> 04:03:41,360 THE INFORMATION THAT'S 7371 04:03:41,360 --> 04:03:42,800 PRESENTED, I CAN APPLY TO THE 7372 04:03:42,800 --> 04:03:49,960 RESULTS THAT I GET. 7373 04:03:49,960 --> 04:03:52,040 >>LAST FORMAL SCENARIO, THEN 7374 04:03:52,040 --> 04:03:53,240 WE'LL GO TO A COUPLE OF OTHER 7375 04:03:53,240 --> 04:03:54,120 QUESTIONS. 7376 04:03:54,120 --> 04:03:56,720 SO YOU SENT RESULTS FROM A 7377 04:03:56,720 --> 04:03:57,600 NUTRITIONAL EVALUATION OF YOUR 7378 04:03:57,600 --> 04:03:59,680 DIET, AND YOU'RE TOLD THAT 7379 04:03:59,680 --> 04:04:02,080 SEVERAL MICRONUTRIENTS ARE BELOW 7380 04:04:02,080 --> 04:04:04,920 LEVELS THAT THE WORLD HEALTH 7381 04:04:04,920 --> 04:04:05,640 ORGANIZATION CONSIDERS 7382 04:04:05,640 --> 04:04:07,920 SUFFICIENT FOR NORMAL 7383 04:04:07,920 --> 04:04:09,560 DEVELOPMENT OF ORGANS IN THE 7384 04:04:09,560 --> 04:04:11,080 CENTRAL NERVOUS SYSTEM. 7385 04:04:11,080 --> 04:04:12,600 EMILY, WHAT WOULD BE YOUR 7386 04:04:12,600 --> 04:04:16,880 PERSONAL REACTION TO THESE 7387 04:04:16,880 --> 04:04:17,320 RESULTS? 7388 04:04:17,320 --> 04:04:19,000 THESE AGAIN, NOW WE'RE LOOKING 7389 04:04:19,000 --> 04:04:20,120 AT SOMETHING THAT'S AN 7390 04:04:20,120 --> 04:04:22,000 INDIVIDUAL BEHAVIOR, TYPE 7391 04:04:22,000 --> 04:04:23,440 RESULT, BUT ALSO SOMETHING THAT 7392 04:04:23,440 --> 04:04:24,480 WOULD AFFECT THE WHOLE FAMILY, 7393 04:04:24,480 --> 04:04:26,600 SO IT'S A LITTLE BIT DIFFERENT 7394 04:04:26,600 --> 04:04:27,640 CATEGORY. 7395 04:04:27,640 --> 04:04:30,360 SO IF YOU COULD LET US KNOW WHAT 7396 04:04:30,360 --> 04:04:32,440 YOUR REACTION MIGHT BE, AND THE 7397 04:04:32,440 --> 04:04:34,360 QUESTIONS THAT YOU WOULD WANT 7398 04:04:34,360 --> 04:04:37,000 ANSWERED IN THAT INFORMATION? 7399 04:04:37,000 --> 04:04:38,720 >>SO WHEN I FIRST READ THIS 7400 04:04:38,720 --> 04:04:40,120 QUESTION, MY INITIAL THOUGHT 7401 04:04:40,120 --> 04:04:41,760 WAS, AM I PREGNANT OR NOT? 7402 04:04:41,760 --> 04:04:44,600 WHEN I GET THESE RESULTS. 7403 04:04:44,600 --> 04:04:49,320 BECAUSE I DON'T -- YEAH, IF IT'S 7404 04:04:49,320 --> 04:04:51,120 JUST ME, I KIND OF LIVE WITH 7405 04:04:51,120 --> 04:04:52,640 THERE'S GOING TO BE A DEFICIT OF 7406 04:04:52,640 --> 04:04:53,800 SOMETHING, RIGHT, LIKE AS A 7407 04:04:53,800 --> 04:04:56,200 PARENT OF ALMOST FIVE KIDS WHO 7408 04:04:56,200 --> 04:04:57,080 WORKS FULL TIME. 7409 04:04:57,080 --> 04:04:59,440 BUT LIKE EITHER SLEEP OR FOOD OR 7410 04:04:59,440 --> 04:05:02,240 IRON OR -- YOU KNOW, I'LL BE 7411 04:05:02,240 --> 04:05:03,360 DEFICIT IN SOMETHING. 7412 04:05:03,360 --> 04:05:04,640 IT'S A TOTALLY DIFFERENT 7413 04:05:04,640 --> 04:05:06,080 SCENARIO IF I'M GETTING THIS 7414 04:05:06,080 --> 04:05:07,480 AND, LIKE, OH, YOU'RE THE ONLY 7415 04:05:07,480 --> 04:05:09,920 SOURCE OF NUTRITION FOR THIS 7416 04:05:09,920 --> 04:05:12,360 HUMAN BEING, OR, YOU KNOW, THIS 7417 04:05:12,360 --> 04:05:13,240 IS ONE OF THOSE RESULTS THAT 7418 04:05:13,240 --> 04:05:15,080 LIKE EVEN IF IT CAME THREE YEARS 7419 04:05:15,080 --> 04:05:18,120 LATER, I'D WANT TO KNOW, BECAUSE 7420 04:05:18,120 --> 04:05:20,960 IT IMPACTED THAT CHILD AND EVERY 7421 04:05:20,960 --> 04:05:25,440 SUBSEQUENT CHILD THAT I'VE HAD. 7422 04:05:25,440 --> 04:05:26,760 AND THE LEVEL OF ANXIETY WOULD 7423 04:05:26,760 --> 04:05:35,400 CHANGE BASED ON WHAT -- WHERE I 7424 04:05:35,400 --> 04:05:38,040 AM, BUT THINKING ABOUT -- AGAIN, 7425 04:05:38,040 --> 04:05:39,200 I'M A BROKEN RECORD HERE BUT I 7426 04:05:39,200 --> 04:05:41,840 WOULD LOVE TO HAVE SOME KIND OF 7427 04:05:41,840 --> 04:05:45,440 NEXT STEP PRESENTED ALONGSIDE 7428 04:05:45,440 --> 04:05:46,640 THE -- YOU KNOW, HERE'S SOME BAD 7429 04:05:46,640 --> 04:05:47,920 NEWS. 7430 04:05:47,920 --> 04:05:49,680 AND I APPRECIATE THE CONTEXT OF 7431 04:05:49,680 --> 04:05:51,840 LIKE HERE'S WHAT THE WORLD 7432 04:05:51,840 --> 04:05:52,440 HEALTH ORGANIZATION RECOMMENDS 7433 04:05:52,440 --> 04:05:54,560 OR HERE'S WHAT WOULD BE 7434 04:05:54,560 --> 04:05:56,080 COMPARABLE OR, LIKE, MANY PEOPLE 7435 04:05:56,080 --> 04:05:58,400 IN NEW HAMPSHIRE ARE DEFICIENT 7436 04:05:58,400 --> 04:06:00,120 IN VITAMIN D, LIKE WHATEVER THE 7437 04:06:00,120 --> 04:06:03,400 NUTRIENT WOULD BE, IF THERE WAS 7438 04:06:03,400 --> 04:06:04,800 SOME CONTEXT TO IT IN ADDITION 7439 04:06:04,800 --> 04:06:05,920 TO THOSE LIKE HERE'S SOMETHING 7440 04:06:05,920 --> 04:06:07,440 YOU COULD DO TO HELP AND IT 7441 04:06:07,440 --> 04:06:08,720 DOESN'T MATTER WHEN I GET THOSE 7442 04:06:08,720 --> 04:06:15,000 RESULTS, I WOULD WANT TO KNOW. 7443 04:06:15,000 --> 04:06:16,680 >>JADINE, DO YOU WANT TO ALSO 7444 04:06:16,680 --> 04:06:18,240 TALK A LITTLE BIT ABOUT THE 7445 04:06:18,240 --> 04:06:19,960 CONTEXT THAT YOU'D LIKE TO GET 7446 04:06:19,960 --> 04:06:21,960 THAT KIND OF NUTRITIONAL 7447 04:06:21,960 --> 04:06:24,000 INFORMATION IN? 7448 04:06:24,000 --> 04:06:24,880 >>YES. 7449 04:06:24,880 --> 04:06:27,560 SO I WOULD THINK THAT I WOULD 7450 04:06:27,560 --> 04:06:31,960 LIKE TO BE -- I WOULDN'T 7451 04:06:31,960 --> 04:06:34,640 NECESSARILY SAY TO LIKE MAIL ME 7452 04:06:34,640 --> 04:06:36,200 THE INFORMATION, BUT LIKE, I 7453 04:06:36,200 --> 04:06:41,120 THINK A PAPER OR, LIKE, MY 7454 04:06:41,120 --> 04:06:43,720 TRUSTED PERSON WITH THE STUDY, I 7455 04:06:43,720 --> 04:06:47,680 THINK SOME FORMAT OF GETTING THE 7456 04:06:47,680 --> 04:06:48,080 INFORMATION. 7457 04:06:48,080 --> 04:06:51,320 IT DOESN'T REALLY MATTER HOW FOR 7458 04:06:51,320 --> 04:06:53,600 THIS ONE IN THE INSTANCE BECAUSE 7459 04:06:53,600 --> 04:06:55,360 I THINK THAT ANY WAY IT'S 7460 04:06:55,360 --> 04:06:56,240 CONVENIENT, WHETHER IT'S THROUGH 7461 04:06:56,240 --> 04:06:58,080 A CHART OR A LETTER OR VIDEO, I 7462 04:06:58,080 --> 04:07:02,000 THINK THAT IT'S IMPORTANT TO GET 7463 04:07:02,000 --> 04:07:03,360 IT OUT THERE IN ANY WAY THAT YOU 7464 04:07:03,360 --> 04:07:05,440 SEE IS, LIKE, FIT. 7465 04:07:05,440 --> 04:07:11,120 I THINK THAT IN ANY WAY BEING A 7466 04:07:11,120 --> 04:07:12,120 20-YEAR-OLD, OR NOW THAT I'M 7467 04:07:12,120 --> 04:07:14,160 LIVING ON MY OWN, I THINK THAT 7468 04:07:14,160 --> 04:07:17,440 IT IMPORTANT FOR ME TO KNOW 7469 04:07:17,440 --> 04:07:19,520 BECAUSE I BUY MY OWN GROCERIES, 7470 04:07:19,520 --> 04:07:21,680 SO I NEED SOMETHING TO LET ME 7471 04:07:21,680 --> 04:07:23,000 KNOW WHETHER TO STAY AWAY TBR 7472 04:07:23,000 --> 04:07:25,280 THIS FOOD OR TO GET MORE OF THIS 7473 04:07:25,280 --> 04:07:28,960 FOOD FOR MYSELF SO I CAN BE, YOU 7474 04:07:28,960 --> 04:07:34,040 KNOW, GOOD ON NUTRIENTS. 7475 04:07:34,040 --> 04:07:37,600 >>AND VIVAINNETE, WHAT KINDS OF 7476 04:07:37,600 --> 04:07:40,120 CHANGES, GIVEN WHERE YOU LIVE 7477 04:07:40,120 --> 04:07:41,960 AND DIFFICULTIES IN ACCESS, WHAT 7478 04:07:41,960 --> 04:07:46,000 KINDS OF CHANGES MIGHT YOU WANT 7479 04:07:46,000 --> 04:07:48,320 TO MAKE AND WHAT WOULD THOSE 7480 04:07:48,320 --> 04:07:49,840 BARRIERS BE? 7481 04:07:49,840 --> 04:08:00,320 [SPEAKING FOREIGN LANGUAGE] 7482 04:08:04,800 --> 04:08:07,640 >>SO MORE THAN -- I WOULD LIKE 7483 04:08:07,640 --> 04:08:09,880 TO KNOW AFTER I MAKE THESE 7484 04:08:09,880 --> 04:08:11,760 CHANGES, I WOULD LIKE TO KNOW 7485 04:08:11,760 --> 04:08:14,200 WHAT IS THE RESULT OF THIS 7486 04:08:14,200 --> 04:08:16,600 CHANGE IN MY BODY, IF I HAVE 7487 04:08:16,600 --> 04:08:18,200 COME BETTER, THAT IS SOMETHING 7488 04:08:18,200 --> 04:08:28,520 THAT IS IMPORTANT. 7489 04:08:36,960 --> 04:08:38,320 [SPEAKING FOREIGN LANGUAGE] 7490 04:08:38,320 --> 04:08:43,120 >>I WOULD LIKE TO KNOW WHERE I 7491 04:08:43,120 --> 04:08:44,960 CAN GET FOOD THAT HAS NUTRIENTS 7492 04:08:44,960 --> 04:08:53,720 THAT I'M LACKING. 7493 04:08:53,720 --> 04:08:55,800 I WOULD ALSO LIKE TO KNOW IF 7494 04:08:55,800 --> 04:08:57,000 THERE'S A PROGRAM THAT WOULD 7495 04:08:57,000 --> 04:09:05,960 SUPPORT ME IN THIS. 7496 04:09:05,960 --> 04:09:07,920 >>ONE OF THE BARRIERS IS LIVING 7497 04:09:07,920 --> 04:09:09,880 ON AN ISLAND AND THE LACK OF 7498 04:09:09,880 --> 04:09:12,120 ACCESS TO ALL THE NUTRIENTS OR 7499 04:09:12,120 --> 04:09:21,440 ALL THE FOOD THAT WE WOULD NEED. 7500 04:09:21,440 --> 04:09:23,600 AND WE ALSO KNOW THAT TO EAT 7501 04:09:23,600 --> 04:09:25,440 HEALTHY COSTS MORE. 7502 04:09:25,440 --> 04:09:30,920 IT'S EXPENSIVE TO EAT HEALTHY. 7503 04:09:30,920 --> 04:09:31,600 >>GREAT POINTS. 7504 04:09:31,600 --> 04:09:33,640 THANK YOU. 7505 04:09:33,640 --> 04:09:36,040 AND PAMELA, HOW WOULD YOU SEE 7506 04:09:36,040 --> 04:09:38,000 THE FORMAT THAT WOULD BE MOST 7507 04:09:38,000 --> 04:09:39,520 USEFUL FOR YOU FOR THESE 7508 04:09:39,520 --> 04:09:42,120 RESULTS? 7509 04:09:42,120 --> 04:09:43,640 AND THE COMPARISONS THAT YOU'D 7510 04:09:43,640 --> 04:09:47,000 WANT TO SEE? 7511 04:09:47,000 --> 04:09:52,360 >>FOR THIS INSTANCE, I THINK WE 7512 04:09:52,360 --> 04:09:54,000 ARE -- THIS WOULD PROBABLY BE A 7513 04:09:54,000 --> 04:09:55,320 SUGGESTION. 7514 04:09:55,320 --> 04:09:56,960 WE'RE FORTUNATE IN THE WOMEN'S 7515 04:09:56,960 --> 04:09:59,160 HEALTH CLINIC THAT I WORK IN 7516 04:09:59,160 --> 04:10:02,840 THAT OUR COHORT HAS GOOD 7517 04:10:02,840 --> 04:10:03,880 RELATIONSHIPS WITH OUR 7518 04:10:03,880 --> 04:10:05,240 PROVIDERS. 7519 04:10:05,240 --> 04:10:06,120 FOR INSTANCE, YOU WERE SAYING 7520 04:10:06,120 --> 04:10:07,320 WHAT DO THE PROVIDERS DO WHEN 7521 04:10:07,320 --> 04:10:09,280 THEY GET THE REPORT, OR IF THEY 7522 04:10:09,280 --> 04:10:11,240 GET A RESULT BACK. 7523 04:10:11,240 --> 04:10:12,440 IT'S FUNNY BECAUSE THIS HAS 7524 04:10:12,440 --> 04:10:14,560 HAPPENED WITH ONE OF OUR 7525 04:10:14,560 --> 04:10:15,920 PROVIDERS, HE'S LIKE, HE'LL LOOK 7526 04:10:15,920 --> 04:10:18,080 AT SOMETHING AND HE'D BE LIKE, I 7527 04:10:18,080 --> 04:10:21,960 HAVE NO IDEA WHAT THIS IS, BUT I 7528 04:10:21,960 --> 04:10:23,520 CAN -- WE'LL FIND SOMEBODY WHO 7529 04:10:23,520 --> 04:10:26,880 KNOWS WHAT IT IS, AND WE'LL 7530 04:10:26,880 --> 04:10:27,960 FIGURE OUT WHAT WE'RE GOING TO 7531 04:10:27,960 --> 04:10:31,720 DO ABOUT IT. 7532 04:10:31,720 --> 04:10:34,000 THAT'S HIS ENTHUSIASM AS FAR 7533 04:10:34,000 --> 04:10:35,080 AS -- WE DO EVERY TUESDAY 7534 04:10:35,080 --> 04:10:36,440 MORNING A CLINIC CALL THE 7535 04:10:36,440 --> 04:10:39,040 SPECIAL CARE O.B., FOR OUR O.B. 7536 04:10:39,040 --> 04:10:39,800 PATIENTS. 7537 04:10:39,800 --> 04:10:41,520 IN OUR CLINIC, WE DO DAILY 7538 04:10:41,520 --> 04:10:43,560 WALK-INS SO HE IF WE HAVE A 7539 04:10:43,560 --> 04:10:45,000 POSTPARTUM MOM WHO COMES BACK 7540 04:10:45,000 --> 04:10:48,600 WITH A RESULT, OR IN THIS CASE, 7541 04:10:48,600 --> 04:10:52,640 WE CAN GET OUR COHORT THE LADIES 7542 04:10:52,640 --> 04:10:55,240 IN OUR PROGRAM WOULD USUALLY 7543 04:10:55,240 --> 04:10:56,560 APPROACH ONE OF THE PROVIDERS 7544 04:10:56,560 --> 04:10:59,040 AND ASK IF THEY COULD MEET WITH 7545 04:10:59,040 --> 04:11:00,240 THE PATIENT AND SEE IF THEY 7546 04:11:00,240 --> 04:11:02,760 COULD GET A REFERRAL TO OUR 7547 04:11:02,760 --> 04:11:07,040 NUTRITIONIST WITHIN THE 7548 04:11:07,040 --> 04:11:07,360 FACILITIES. 7549 04:11:07,360 --> 04:11:09,640 AND THEN THEY WOULD LTION REFER 7550 04:11:09,640 --> 04:11:11,880 THEM BACK TO A PRIMARY CARE 7551 04:11:11,880 --> 04:11:13,240 PROVIDER WHO COULD MANAGE, LIKE 7552 04:11:13,240 --> 04:11:14,960 IF THEY NEED VITAMIN D, THEY CAN 7553 04:11:14,960 --> 04:11:16,920 PRESCRIBE THEM THE VITAMIN D, 7554 04:11:16,920 --> 04:11:18,080 AND THEN THEY WILL ALSO FOLLOW 7555 04:11:18,080 --> 04:11:24,240 UP BIWEEKLY WITH OUR 7556 04:11:24,240 --> 04:11:26,160 NUTRITIONISTS IN OUR CLINICS. 7557 04:11:26,160 --> 04:11:28,600 FOR ME, IT WOULD BE THE CELIAC 7558 04:11:28,600 --> 04:11:30,560 DISEASE IS WHAT I WAS RECENTLY 7559 04:11:30,560 --> 04:11:32,920 DIAGNOSED WITH, THAT PERTAINS TO 7560 04:11:32,920 --> 04:11:35,800 MY FIBROMYALGIA AS WELL, AND IT 7561 04:11:35,800 --> 04:11:38,960 IS HARD AND EXPENSIVE TO KEEP ON 7562 04:11:38,960 --> 04:11:40,440 THIS DIET. 7563 04:11:40,440 --> 04:11:42,440 LIKE, EVERYTHING GLUTEN-FREE, I 7564 04:11:42,440 --> 04:11:47,880 CAN'T EAT WHEAT, RYE, AND THE 7565 04:11:47,880 --> 04:11:49,520 SAME GOES FOR MY DAUGHTER. 7566 04:11:49,520 --> 04:11:53,240 SHE IS ALLERGIC, ALLERGIC TO 7567 04:11:53,240 --> 04:11:54,120 DAIRY. 7568 04:11:54,120 --> 04:11:57,160 SHE CAN'T -- SO WE HAVE TO DO 7569 04:11:57,160 --> 04:12:00,880 THINGS, COOK MEALS DIFFERENTLY, 7570 04:12:00,880 --> 04:12:03,160 AND I WAS JUST SAYING THIS 7571 04:12:03,160 --> 04:12:03,600 MORNING, ONE. 7572 04:12:03,600 --> 04:12:05,000 LADIES ASKED, ARE YOU KIDS OKAY 7573 04:12:05,000 --> 04:12:05,880 WITHOUT YOU? 7574 04:12:05,880 --> 04:12:06,960 ONE OF OUR PROVIDERS, HER NAME 7575 04:12:06,960 --> 04:12:11,320 IS DR. DELAVLEY, SHE WAS LIKE 7576 04:12:11,320 --> 04:12:12,400 WHERE DO YOU FIND THESE KIDS AT? 7577 04:12:12,400 --> 04:12:13,640 BUT THEY'RE FINE. 7578 04:12:13,640 --> 04:12:15,480 WE MAKE CROCK POT MEALS AND WE 7579 04:12:15,480 --> 04:12:18,400 HAD TO GO BUY THAT SPECIFIC DIET 7580 04:12:18,400 --> 04:12:20,080 BUT IT DOES GET PRICEY. 7581 04:12:20,080 --> 04:12:22,120 LIKE I SAID, WE ARE VERY 7582 04:12:22,120 --> 04:12:24,280 FORTUNATE THAT WE DO HAVE THE 7583 04:12:24,280 --> 04:12:25,480 SUPPORT THAT WE DO HAVE FROM THE 7584 04:12:25,480 --> 04:12:27,680 COHORT PROGRAMS, AND THEM 7585 04:12:27,680 --> 04:12:31,240 REACHING OUT TO OTHER PROGRAMS 7586 04:12:31,240 --> 04:12:32,160 LIKE OUR FRUIT AND VEGETABLE 7587 04:12:32,160 --> 04:12:33,880 PROGRAM IS ALSO UNDER THE 7588 04:12:33,880 --> 04:12:36,600 WOMEN'S HEALTH PROGRAM IN CHIN 7589 04:12:36,600 --> 04:12:39,880 LEE WHERE THEY GIVE OUR MOMS UP 7590 04:12:39,880 --> 04:12:41,720 TO $100 IN FRUIT AND VEGETABLE 7591 04:12:41,720 --> 04:12:45,800 VOUCHERS TO HELP WITH INSTANCES 7592 04:12:45,800 --> 04:12:47,440 LIKE THIS, THEY WOULD JUST NEED 7593 04:12:47,440 --> 04:12:52,520 A REFERRAL FROM OUR PROVIDERS. 7594 04:12:52,520 --> 04:12:54,120 >>I WANT TO CLOSE WITH JUST A 7595 04:12:54,120 --> 04:12:56,600 FEW GENERAL QUESTIONS AND 7596 04:12:56,600 --> 04:12:58,720 WHOEVER HAS A THOUGHT ON THEM 7597 04:12:58,720 --> 04:13:02,200 CAN JUST ANSWER THEM. 7598 04:13:02,200 --> 04:13:04,160 IS THERE ANYTHING IN THE RESULTS 7599 04:13:04,160 --> 04:13:08,360 THAT YOU'VE GONE THROUGH SO FAR 7600 04:13:08,360 --> 04:13:10,520 THAT YOU REALLY DON'T WHAT TO 7601 04:13:10,520 --> 04:13:11,160 HAVE BACK? 7602 04:13:11,160 --> 04:13:15,640 THERE ARE A TON OF RESULTS HERE, 7603 04:13:15,640 --> 04:13:17,560 SO LOOKING AT SORT OF WAYS TO 7604 04:13:17,560 --> 04:13:18,160 PRIORITIZE, WHAT WOULD YOU PUT 7605 04:13:18,160 --> 04:13:25,280 THE LOWEST PRIORITY ON? 7606 04:13:25,280 --> 04:13:27,720 >>JUST FROM A TECHNICAL 7607 04:13:27,720 --> 04:13:29,080 PERSPECTIVE, IF THE RESULTS ARE 7608 04:13:29,080 --> 04:13:30,880 NORMAL, IF THERE'S A WAY TO LIKE 7609 04:13:30,880 --> 04:13:32,680 SUMMARIZE THOSE IN A LOW EFFORT 7610 04:13:32,680 --> 04:13:34,520 MANNER AND SEND THOSE OUT IN A 7611 04:13:34,520 --> 04:13:37,720 DIGEST, YOU KNOW, SOMETHING LESS 7612 04:13:37,720 --> 04:13:39,120 FREQUENT, THAT'S FINE. 7613 04:13:39,120 --> 04:13:40,640 LIKE THAT'S KIND OF THE LOWEST 7614 04:13:40,640 --> 04:13:42,360 PRIORITY OF COMMUNICATION, IF 7615 04:13:42,360 --> 04:13:45,000 THERE'S NOTHING STRANGE, THE 7616 04:13:45,000 --> 04:13:46,320 EXPECTED RESULTS, YEAH. 7617 04:13:46,320 --> 04:13:47,320 >>ANYBODY ELSE HAVE A THOUGHT 7618 04:13:47,320 --> 04:13:53,520 ON THAT? 7619 04:13:53,520 --> 04:13:54,840 >>I THINK IT WOULD JUST BE THE 7620 04:13:54,840 --> 04:13:55,880 SAME THING LIKE WHETHER IT'S 7621 04:13:55,880 --> 04:13:58,760 WITHIN THE STANDARDIZED OR 7622 04:13:58,760 --> 04:14:00,200 WITHIN OUR COMMUNITY AND OUR 7623 04:14:00,200 --> 04:14:00,800 POPULATION IN OUR COMMUNITIES 7624 04:14:00,800 --> 04:14:02,320 ARE WITHIN THAT RANGE, IT WOULD 7625 04:14:02,320 --> 04:14:05,160 BE SOMETHING THAT WOULDN'T BE -- 7626 04:14:05,160 --> 04:14:09,440 FOR ME, LIKE, I WORRY ABOUT 7627 04:14:09,440 --> 04:14:09,720 EVERYTHING. 7628 04:14:09,720 --> 04:14:10,560 BUT I THINK -- 7629 04:14:10,560 --> 04:14:11,640 >>WITH GOOD REASON. 7630 04:14:11,640 --> 04:14:14,560 >>I THINK IT WOULD BE LIKE IF 7631 04:14:14,560 --> 04:14:19,560 IT'S AT A STANDARDIZED RANGE TO 7632 04:14:19,560 --> 04:14:21,120 WHERE IT'S -- WITHIN OUR 7633 04:14:21,120 --> 04:14:22,400 COMMUNITY IS IN THAT SAME RANGE, 7634 04:14:22,400 --> 04:14:23,240 IT WOULDN'T BE SO -- 7635 04:14:23,240 --> 04:14:25,440 >>SO WE ALSO TALKED BEFORE, 7636 04:14:25,440 --> 04:14:29,240 THOUGH, ABOUT IF -- BECAUSE SOME 7637 04:14:29,240 --> 04:14:30,680 COHORTS HAD A PRACTICE THAT IF 7638 04:14:30,680 --> 04:14:32,240 YOU WERE WITHIN A NORMAL RANGE, 7639 04:14:32,240 --> 04:14:33,640 THEY JUST WOULDN'T COMMUNICATE 7640 04:14:33,640 --> 04:14:34,400 THAT BACK. 7641 04:14:34,400 --> 04:14:36,480 SO YOU KNEW AHEAD OF TIME THAT 7642 04:14:36,480 --> 04:14:37,800 YOU WOULD ONLY BE GETTING 7643 04:14:37,800 --> 04:14:39,960 RESULTS IF THEY WERE OUTSIDE OF 7644 04:14:39,960 --> 04:14:43,680 THAT NORMAL RANGE. 7645 04:14:43,680 --> 04:14:46,160 AND WE HAD SOME OPINIONS ON THAT 7646 04:14:46,160 --> 04:14:47,480 AND WHETHER THAT WAS ACCEPTABLE 7647 04:14:47,480 --> 04:14:51,760 OR NOT, AND WOULD SOME OF YOU 7648 04:14:51,760 --> 04:14:52,800 LIKE TO WEIGH IN ON THAT? 7649 04:14:52,800 --> 04:14:59,520 >>I THINK THAT WHETHER OUR 7650 04:14:59,520 --> 04:15:00,880 RESULTS WERE NEGATIVE OR NORMAL, 7651 04:15:00,880 --> 04:15:03,800 I THINK THAT YOU SHOULD BE GIVEN 7652 04:15:03,800 --> 04:15:06,440 THAT INFORMATION. 7653 04:15:06,440 --> 04:15:07,920 I THINK PRIORITY SHOULD 7654 04:15:07,920 --> 04:15:11,200 DEFINITELY GO TO INFORMATION 7655 04:15:11,200 --> 04:15:12,840 THAT IS DIRE FOR US TO KNOW, BUT 7656 04:15:12,840 --> 04:15:17,000 I THINK THAT IF A NORMAL RESULT, 7657 04:15:17,000 --> 04:15:18,520 THAT WE CAN GET IT IN THE -- 7658 04:15:18,520 --> 04:15:20,520 LIKE A LETTER OR, LIKE, 7659 04:15:20,520 --> 04:15:22,240 SOMETHING THAT, YOU KNOW, 7660 04:15:22,240 --> 04:15:26,720 DOESN'T SCARE A PARTICIPANT THAT 7661 04:15:26,720 --> 04:15:29,800 YOU KNOW. 7662 04:15:29,800 --> 04:15:31,200 KNOW SOMETHING THAT IS EASY 7663 04:15:31,200 --> 04:15:33,600 FOR EVERYONE TO RECEIVE AND, YOU 7664 04:15:33,600 --> 04:15:36,960 KNOW, STILL SLEEP PEACEFULLY 7665 04:15:36,960 --> 04:15:38,960 THAT WE HAVE NORMAL RESULTS -- 7666 04:15:38,960 --> 04:15:41,280 PENDING RESULTS AS WELL. 7667 04:15:41,280 --> 04:15:46,040 >>ANYBODY ELSE WANT TO -- 7668 04:15:46,040 --> 04:15:47,720 >> 7669 04:15:47,720 --> 04:15:52,600 [SPEAKING FOREIGN LANGUAGE] 7670 04:15:52,600 --> 04:15:54,160 >>I BELIEVE THAT WE SHOULD GET 7671 04:15:54,160 --> 04:15:55,560 THE RESULTS NO MATTER WHAT IT 7672 04:15:55,560 --> 04:16:05,640 IS. 7673 04:16:16,480 --> 04:16:18,080 WE GIVE OUR TIME TO THESE 7674 04:16:18,080 --> 04:16:19,920 STUDIES AND THIS CREATES A 7675 04:16:19,920 --> 04:16:22,440 RELATIONSHIP OF TRUST THAT WE 7676 04:16:22,440 --> 04:16:24,080 CAN IMPROVE CONDITIONS FOR 7677 04:16:24,080 --> 04:16:30,760 OURSELVES AND OUR FAMILIES. 7678 04:16:30,760 --> 04:16:32,480 >>JUST ONE PARTING THOUGHT IS 7679 04:16:32,480 --> 04:16:34,800 THAT WHEN WE WERE TALKING THIS 7680 04:16:34,800 --> 04:16:36,440 MORNING ABOUT YOU DON'T WANT TO 7681 04:16:36,440 --> 04:16:41,000 DO HARM, I FEEL LIKE WE'RE AT A 7682 04:16:41,000 --> 04:16:41,640 STAGE WHERE WE'RE USED TO 7683 04:16:41,640 --> 04:16:42,760 INFORMATION, IT'S HARD TO DO 7684 04:16:42,760 --> 04:16:43,840 HARM JUST BY GIVING US 7685 04:16:43,840 --> 04:16:44,680 INFORMATION. 7686 04:16:44,680 --> 04:16:49,400 GRANTED I'M NOT A LAWYER, BUT 7687 04:16:49,400 --> 04:16:50,480 THINKING ABOUT THE PUZZLES THAT 7688 04:16:50,480 --> 04:16:52,040 I WILL HAVE TO SOLVE ABOUT MY 7689 04:16:52,040 --> 04:16:54,200 HEALTH AND MY CHILDREN'S HEALTH, 7690 04:16:54,200 --> 04:16:55,600 YOU AS RESEARCHERS JUST WON'T 7691 04:16:55,600 --> 04:16:57,040 HAVE WINDOWS INTO ALL THOSE 7692 04:16:57,040 --> 04:16:58,520 COMPLEXITIES, BUT I WOULD LOVE 7693 04:16:58,520 --> 04:16:59,440 TO HAVE YOUR HELP IN PUTTING 7694 04:16:59,440 --> 04:17:00,960 TOGETHER THE PUTZ PUZ EL IF 7695 04:17:00,960 --> 04:17:02,280 THERE IS SOMETHING ABOUT WATER 7696 04:17:02,280 --> 04:17:03,760 QUALITY THAT WOULD IMPACT THINGS 7697 04:17:03,760 --> 04:17:06,120 DOWN THE ROAD, I WOULD LOVE TO 7698 04:17:06,120 --> 04:17:07,800 HAVE THE DATA THAT I HAD NORMAL 7699 04:17:07,800 --> 04:17:10,680 WATER BACK IN 2017. 7700 04:17:10,680 --> 04:17:12,200 THAT'S THE KIND OF THING THAT 7701 04:17:12,200 --> 04:17:15,440 JUST HELPS BUILD -- IS SOMETHING 7702 04:17:15,440 --> 04:17:17,120 FOR ME TO ADVOCATE FOR MYSELF IN 7703 04:17:17,120 --> 04:17:20,640 THE LONG RUN AND YOU JUST WON'T 7704 04:17:20,640 --> 04:17:21,840 HAVE THAT PERSPECTIVE BUT YOU 7705 04:17:21,840 --> 04:17:27,680 CAN BE PART OF MY TEAM. 7706 04:17:27,680 --> 04:17:29,320 >>I THINK GETTING BACK THE 7707 04:17:29,320 --> 04:17:32,760 RESULTS FOR ME WOULD BE, I WOULD 7708 04:17:32,760 --> 04:17:34,400 LIKE TO GET RESULTS BACK WHETHER 7709 04:17:34,400 --> 04:17:36,440 OR NOT THEY'RE NORMAL OR 7710 04:17:36,440 --> 04:17:39,840 ABNORMAL, EVEN IF IT'S LIKE IN A 7711 04:17:39,840 --> 04:17:41,600 QUARTERLY REPORT OR A QUARTERLY 7712 04:17:41,600 --> 04:17:46,840 LETTER, EMAIL OR WHATEVER. 7713 04:17:46,840 --> 04:17:49,240 AND THEN JUST BECAUSE THAT WAY 7714 04:17:49,240 --> 04:17:51,880 IF FOR FUTURE REFERENCES LIKE IF 7715 04:17:51,880 --> 04:17:54,920 MY DAUGHTER PAISLEY, WHO IS 7716 04:17:54,920 --> 04:17:57,240 VERY -- WHO'S USING THE PROGRAM 7717 04:17:57,240 --> 04:18:00,840 RESOURCES VERY EFFICIENTLY AND 7718 04:18:00,840 --> 04:18:06,080 VERY OFTEN, THAT, YOU KNOW, WE 7719 04:18:06,080 --> 04:18:09,560 CAN DO A COMPARISON TO LATER ON 7720 04:18:09,560 --> 04:18:16,560 IN LIFE, IF SHE EVER HAS HER OWN 7721 04:18:16,560 --> 04:18:17,200 CHILDREN, AS FAR AS NOT JUST 7722 04:18:17,200 --> 04:18:18,800 THAT, I DO HAVE A GRANDSON WHO 7723 04:18:18,800 --> 04:18:19,600 IS A PART OF THE PROGRAM AS 7724 04:18:19,600 --> 04:18:20,040 WELL. 7725 04:18:20,040 --> 04:18:21,240 JUST THINGS LIKE THAT, WE WOULD 7726 04:18:21,240 --> 04:18:26,640 LIKE TO HAVE THOSE REFERENCES 7727 04:18:26,640 --> 04:18:30,440 FOR FUTURE, FOR OUR NEXT 7728 04:18:30,440 --> 04:18:31,320 GENERATIONS, AS I THINK THAT'S 7729 04:18:31,320 --> 04:18:39,120 VERY IMPORTANT. 7730 04:18:39,120 --> 04:18:40,520 >> 7731 04:18:40,520 --> 04:18:45,000 [SPEAKING FOREIGN LANGUAGE] 7732 04:18:45,000 --> 04:18:46,800 GLS NOW I HAVE A QUESTION. 7733 04:18:46,800 --> 04:18:48,920 UP TO WHAT POINT IT IS MY RIGHT 7734 04:18:48,920 --> 04:18:52,840 TO HAVE ACCESS TO THIS 7735 04:18:52,840 --> 04:18:56,600 INFORMATION? 7736 04:18:56,600 --> 04:18:58,280 >>AND I WOULD LIKE TO HAVE 7737 04:18:58,280 --> 04:18:59,640 SOMEONE WITH LEGAL BACKGROUND 7738 04:18:59,640 --> 04:19:05,520 ANSWER THAT. 7739 04:19:05,520 --> 04:19:07,080 I CERTAINLY HAVE AN OPINION, 7740 04:19:07,080 --> 04:19:08,360 BUT -- DO WE HAVE ANYONE THAT 7741 04:19:08,360 --> 04:19:14,560 WANT TO JUMP IN THERE? 7742 04:19:14,560 --> 04:19:17,640 SO I HAVE A SUSPICION THAT WHAT 7743 04:19:17,640 --> 04:19:20,720 THE ANSWER WOULD BE WOULD BE THE 7744 04:19:20,720 --> 04:19:25,600 CONSENT FORM THAT'S SIGNED, AND 7745 04:19:25,600 --> 04:19:26,200 THAT'S WHERE IT'S GOING TO BE 7746 04:19:26,200 --> 04:19:27,240 LAID OUT, WHAT INFORMATION AND 7747 04:19:27,240 --> 04:19:30,320 WHAT THE INTENT IS, AND I WOULD 7748 04:19:30,320 --> 04:19:34,360 SEE THAT AS SOME LEVEL OF A 7749 04:19:34,360 --> 04:19:34,960 CONTRACTUAL AGREEMENT BETWEEN 7750 04:19:34,960 --> 04:19:36,960 YOU AND THE STUDY. 7751 04:19:36,960 --> 04:19:38,400 OTHER THOUGHTS? 7752 04:19:38,400 --> 04:19:41,040 >>I KNOW COMING FROM THE 7753 04:19:41,040 --> 04:19:43,600 CLINICAL SETTING, HIPAA DOES 7754 04:19:43,600 --> 04:19:46,240 COME IN PART WITH THAT, BUT IF 7755 04:19:46,240 --> 04:19:49,400 THERE'S A CONSENT SIGNED AND 7756 04:19:49,400 --> 04:19:52,560 IT'S AT THE PARTICIPANT'S 7757 04:19:52,560 --> 04:19:56,520 REQUESREQUESTEE, YOU CAN HAVE YR 7758 04:19:56,520 --> 04:19:57,200 RECORDS. 7759 04:19:57,200 --> 04:20:04,280 THEY'RE YOUR RECORDS. 7760 04:20:04,280 --> 04:20:05,160 >> 7761 04:20:05,160 --> 04:20:07,680 [SPEAKING FOREIGN LANGUAGE] 7762 04:20:07,680 --> 04:20:10,080 >>ONE OF MY PRIORITIES IN 7763 04:20:10,080 --> 04:20:11,480 PARTICIPATING IN THE STUDY IS 7764 04:20:11,480 --> 04:20:12,880 PRECISELY THAT, THAT I WILL GET 7765 04:20:12,880 --> 04:20:21,360 BACK MY RESULTS. 7766 04:20:21,360 --> 04:20:23,400 >>I'M GOING TO MOVE ON TO ONE 7767 04:20:23,400 --> 04:20:25,160 LAST QUESTION AND THEN OPEN IT 7768 04:20:25,160 --> 04:20:28,640 UP FOR QUESTIONS FROM AUDIENCE. 7769 04:20:28,640 --> 04:20:30,480 AND IT GOES BACK TO THE QUESTION 7770 04:20:30,480 --> 04:20:32,000 THAT CAME UP BEFORE ABOUT THE 7771 04:20:32,000 --> 04:20:34,840 TIMING OF RESULTS. 7772 04:20:34,840 --> 04:20:36,720 AND IT'S NOT UNCOMMON AS YOU'VE 7773 04:20:36,720 --> 04:20:41,160 HEARD OVER AND OVER TODAY THAT 7774 04:20:41,160 --> 04:20:41,960 SOME OF THESE LABORATORY 7775 04:20:41,960 --> 04:20:43,280 ANALYSES CAN TAKE UP TO TWO 7776 04:20:43,280 --> 04:20:44,880 YEARS TO GET BACK FOR VARIOUS 7777 04:20:44,880 --> 04:20:47,000 REASONS. 7778 04:20:47,000 --> 04:20:49,280 AND ARE THERE ANY INCIDENCES 7779 04:20:49,280 --> 04:20:51,120 WHERE YOU WOULD STILL WANT THOSE 7780 04:20:51,120 --> 04:20:53,640 DATA OR YOU WOULD NOT WANT THOSE 7781 04:20:53,640 --> 04:20:54,960 DATA, AND IF YOU CAN JUST KIND 7782 04:20:54,960 --> 04:20:57,000 OF DISCUSS THAT TIMING ISSUE, 7783 04:20:57,000 --> 04:21:03,040 THAT WOULD BE HELPFUL. 7784 04:21:03,040 --> 04:21:05,000 >>ME PERSONALLY WITH THE 7785 04:21:05,000 --> 04:21:06,840 TIMING, I THINK NO MATTER HOW 7786 04:21:06,840 --> 04:21:08,840 LONG IT TAKES TO GET THE RESULT, 7787 04:21:08,840 --> 04:21:11,320 I THINK IF THERE'S AN INITIAL 7788 04:21:11,320 --> 04:21:13,280 ONE FOR THAT INFORMATION, 7789 04:21:13,280 --> 04:21:14,400 REGARDLESS HOW LONG IT TAKES, I 7790 04:21:14,400 --> 04:21:15,840 THINK WE SHOULD GET THAT 7791 04:21:15,840 --> 04:21:16,400 INFORMATION. 7792 04:21:16,400 --> 04:21:19,040 EVEN IF SOMETHING HAPPENED THAT 7793 04:21:19,040 --> 04:21:20,160 IS NOT NECESSARILY PREVENTABLE, 7794 04:21:20,160 --> 04:21:21,600 BUT I THINK THAT IT CAN BE 7795 04:21:21,600 --> 04:21:24,440 PROACTIVE FOR THE NEXT CHILD OR 7796 04:21:24,440 --> 04:21:27,280 MYSELF IN THE FUTURE TO AVOID 7797 04:21:27,280 --> 04:21:30,360 SOMETHING OR TO, YOU KNOW, GET 7798 04:21:30,360 --> 04:21:32,840 MORE OF A CERTAIN KIND OF 7799 04:21:32,840 --> 04:21:33,600 NUTRIENTS. 7800 04:21:33,600 --> 04:21:38,280 YOU KNOW, I THINK THAT IT'S -- 7801 04:21:38,280 --> 04:21:39,040 IT'S IMPORTANT EITHER WAY 7802 04:21:39,040 --> 04:21:40,040 BECAUSE YOU HAD A FEELING THAT 7803 04:21:40,040 --> 04:21:42,120 YOU WANTED IT, AND I THINK THAT 7804 04:21:42,120 --> 04:21:43,880 WE SHOULD GET IT. 7805 04:21:43,880 --> 04:21:45,440 >>ANYBODY HAVE A DIFFERENT 7806 04:21:45,440 --> 04:21:50,000 OPINION? 7807 04:21:50,000 --> 04:21:56,880 OKAY. 7808 04:21:56,880 --> 04:22:07,240 CAN WE TAKE QUESTIONS? 7809 04:22:11,800 --> 04:22:12,760 WE HAVE ONE BACK THERE. 7810 04:22:12,760 --> 04:22:14,600 >>THANKS SO MUCH FOR THIS 7811 04:22:14,600 --> 04:22:14,840 PANEL. 7812 04:22:14,840 --> 04:22:16,520 IT JUST A LOT OF FASCINATING 7813 04:22:16,520 --> 04:22:16,840 PERSPECTIVES. 7814 04:22:16,840 --> 04:22:18,640 I WANTED TO FOLLOW UP ON SORT OF 7815 04:22:18,640 --> 04:22:19,960 THAT FIRST EXAMPLE, WHERE YOU 7816 04:22:19,960 --> 04:22:21,680 HAVE A CHEMICAL EXPOSURE WHERE 7817 04:22:21,680 --> 04:22:23,880 THERE'S REASON FOR CONCERN BUT 7818 04:22:23,880 --> 04:22:25,840 NOT SORT OF DEFINITIVE 7819 04:22:25,840 --> 04:22:28,720 INFORMATION ABOUT HOW -- WHAT 7820 04:22:28,720 --> 04:22:29,920 THE IMPLICATIONS ARE FOR HEALTH. 7821 04:22:29,920 --> 04:22:31,320 SO YOU PEOPLE TALK ABOUT HOW 7822 04:22:31,320 --> 04:22:32,600 THEY WANT INFORMATION ABOUT SO 7823 04:22:32,600 --> 04:22:34,920 WHAT CAN I DO TO REDUCE MY 7824 04:22:34,920 --> 04:22:36,000 EXPOSURE. 7825 04:22:36,000 --> 04:22:37,400 SO TWO QUESTIONS, REALLY. 7826 04:22:37,400 --> 04:22:39,600 ONE WOULD BE WOULD YOU HOPE OR 7827 04:22:39,600 --> 04:22:42,680 EXPECT THE STUDY TO DO FOLLOW-UP 7828 04:22:42,680 --> 04:22:45,280 TESTING TO SEE WHETHER YOUR 7829 04:22:45,280 --> 04:22:47,960 ACTIONS HAVE BEEN HELPFUL OR NOT 7830 04:22:47,960 --> 04:22:49,560 TO REDUCE YOUR EXPOSURE? 7831 04:22:49,560 --> 04:22:51,120 AND THEN SECONDLY, SORT OF 7832 04:22:51,120 --> 04:22:55,600 PICKING UP ON A VERY RECENT 7833 04:22:55,600 --> 04:22:56,920 COMMENT, IF THE HEALTH COMMUNITY 7834 04:22:56,920 --> 04:23:00,320 WERE TO FIGURE OUT IN FIVE OR 10 7835 04:23:00,320 --> 04:23:02,520 YEARS WHAT THE HEALTH 7836 04:23:02,520 --> 04:23:03,800 IMPLICATIONS WERE FOR THIS 7837 04:23:03,800 --> 04:23:05,520 CHEMICAL, AND EITHER YES, IT'S A 7838 04:23:05,520 --> 04:23:07,520 SERIOUS PROBLEM, OR NO, IT'S NOT 7839 04:23:07,520 --> 04:23:09,560 A PROBLEM AT ALL, 10 YEARS FROM 7840 04:23:09,560 --> 04:23:11,440 NOW, WOULD YOU EXPECT THE STUDY 7841 04:23:11,440 --> 04:23:14,080 TO -- HOPE OR EXPECT THE STUDY 7842 04:23:14,080 --> 04:23:14,960 TO RECONTACT YOU TO GIVE YOU 7843 04:23:14,960 --> 04:23:20,320 THAT INFORMATION? 7844 04:23:20,320 --> 04:23:22,200 >>I WOULD SAY YES TO BOTH OF 7845 04:23:22,200 --> 04:23:25,360 THOSE QUESTIONS. 7846 04:23:25,360 --> 04:23:28,640 BECAUSE FIRST I THINK THAT -- 7847 04:23:28,640 --> 04:23:31,440 I'M SORRY 7848 04:23:31,440 --> 04:23:32,800 >>WHAT WAS THAT FIRST QUESTION? 7849 04:23:32,800 --> 04:23:33,960 >>SECOND QUESTION WAS ABOUT 7850 04:23:33,960 --> 04:23:36,120 FINDING OUT MORE CONCRETE 7851 04:23:36,120 --> 04:23:37,600 INFORMATION IN FIVE OR 10 YEARS 7852 04:23:37,600 --> 04:23:39,040 ABOUT WHAT THIS EXPOSURE MEANS 7853 04:23:39,040 --> 04:23:41,760 FOR YOU OR YOUR BABY. 7854 04:23:41,760 --> 04:23:44,480 >>SO I WOULD DEFINITELY STILL 7855 04:23:44,480 --> 04:23:48,960 WANT THE INFORMATION AND I THINK 7856 04:23:48,960 --> 04:23:50,720 LIKE I SAID, NO MATTER HOW LONG 7857 04:23:50,720 --> 04:23:52,400 IT TAKES, WE DESERVE THE 7858 04:23:52,400 --> 04:23:53,000 INFORMATION TO BE GIVEN TO US 7859 04:23:53,000 --> 04:23:56,480 AND I THINK THAT IF IT WERE TO 7860 04:23:56,480 --> 04:23:57,600 BE 10 YEARS DOWN THE LINE, I 7861 04:23:57,600 --> 04:23:58,920 WOULD HOPE THAT YOU GUYS STILL 7862 04:23:58,920 --> 04:24:02,240 HAD THAT SAME DEDICATION TO 7863 04:24:02,240 --> 04:24:02,960 COLLECT THE INFORMATION, THAT 7864 04:24:02,960 --> 04:24:04,280 YOU HAD THAT SAME DEDICATION TO 7865 04:24:04,280 --> 04:24:05,800 GIVE US OUR RESULTS BACK NO 7866 04:24:05,800 --> 04:24:10,320 MATTER HOW LONG IT TAKES AND TO 7867 04:24:10,320 --> 04:24:11,840 FIND -- NOT THAT YOU GUYS ARE 7868 04:24:11,840 --> 04:24:16,680 DETECTIVES OR ANYTHING, BUT I 7869 04:24:16,680 --> 04:24:18,160 THINK THAT IF YOU WANT TO FIND 7870 04:24:18,160 --> 04:24:20,400 OUT INFORMATION BAD ENOUGH, THAT 7871 04:24:20,400 --> 04:24:22,440 YOU WILL GIVE YOUR BEST EFFORTS 7872 04:24:22,440 --> 04:24:24,360 TO GIVE THAT INFORMATION BACK TO 7873 04:24:24,360 --> 04:24:25,600 YOUR PARTICIPANTS, BECAUSE WE 7874 04:24:25,600 --> 04:24:27,680 GIVE YOU SO MUCH TOO. 7875 04:24:27,680 --> 04:24:30,640 IT GIVE AND TAKE. 7876 04:24:30,640 --> 04:24:33,320 >>THAT WAS A GREAT CULMINATING 7877 04:24:33,320 --> 04:24:34,040 QUESTION AND RESPONSE, AND I 7878 04:24:34,040 --> 04:24:35,360 THINK IT'S ABOUT TIME THAT WE 7879 04:24:35,360 --> 04:24:39,480 SAY THANK YOU TO ALL OF OUR 7880 04:24:39,480 --> 04:24:39,840 PARTICIPANTS. 7881 04:24:39,840 --> 04:24:42,120 >>CAN I JUST ADD MY LEVEL OF 7882 04:24:42,120 --> 04:24:42,360 THANKS. 7883 04:24:42,360 --> 04:24:44,720 I REALLY, REALLY APPRECIATE ALL 7884 04:24:44,720 --> 04:24:47,600 OF YOU GIVING SUCH THOUGHTFUL 7885 04:24:47,600 --> 04:24:48,240 CONTRIBUTIONS, AND TRAVELING 7886 04:24:48,240 --> 04:24:51,200 HERE TO BE IN PERSON. 7887 04:24:51,200 --> 04:24:52,760 I KNOW IT'S NOT SORT OF ON YOUR 7888 04:24:52,760 --> 04:24:54,240 REGULAR SCHEDULE TO DO THOSE 7889 04:24:54,240 --> 04:24:55,480 KIND OF THINGS, AND IT'S REALLY, 7890 04:24:55,480 --> 04:24:56,800 REALLY HELPFUL TO HAVE YOU HERE. 7891 04:24:56,800 --> 04:25:02,160 SO THANK YOU SO MUCH. 7892 04:25:02,160 --> 04:25:04,000 >>I WANT TO SECOND THE THANKS. 7893 04:25:04,000 --> 04:25:05,080 REALLY APPRECIATE IT VERY MUCH. 7894 04:25:05,080 --> 04:25:07,600 WE'RE NOW AT OUR LUNCH BREAK, SO 7895 04:25:07,600 --> 04:25:09,200 OUR FOOD DELIVERY FOR PEOPLE WHO 7896 04:25:09,200 --> 04:25:12,000 ORDERED A DELIVERY IS OUT THERE, 7897 04:25:12,000 --> 04:25:13,640 AND CATHERINE FROM OUR PROGRAM 7898 04:25:13,640 --> 04:25:16,600 OFFICE IS HELPING TO GET THAT 7899 04:25:16,600 --> 04:25:16,880 ORGANIZED. 7900 04:25:16,880 --> 04:25:18,800 I THINK THEY MAY HAVE FAILED TO 7901 04:25:18,800 --> 04:25:22,760 LABEL EACH INDIVIDUAL ORDER, SO 7902 04:25:22,760 --> 04:25:24,040 NATURALLY ENOUGH, SO TRY TO 7903 04:25:24,040 --> 04:25:26,880 REMEMBER WHAT YOU ORDERED AND 7904 04:25:26,880 --> 04:25:29,480 THEN IF YOU'RE LOCAL STAFF, AS I 7905 04:25:29,480 --> 04:25:31,600 MENTIONED EARLIER, THERE'S A 7906 04:25:31,600 --> 04:25:33,480 CAFE JUST AROUND THE SIDEWALK, 7907 04:25:33,480 --> 04:25:34,760 AND YOU'RE FREE TO WALK THERE. 7908 04:25:34,760 --> 04:25:36,400 AND I DON'T KNOW, MAYBE WE 7909 04:25:36,400 --> 04:25:39,640 SHOULD MEET BACK AT 2:30, DO YOU 7910 04:25:39,640 --> 04:25:40,200 THINK? 7911 04:25:40,200 --> 04:25:41,200 YEAH. 7912 04:25:41,200 --> 04:25:42,840 LET'S -- WE HAD AN HOUR BUT 7913 04:25:42,840 --> 04:25:45,280 WE'RE STILL RUNNING BEHIND SO 7914 04:25:45,280 --> 04:25:46,600 LET'S RECONVENE AT 2:30. 7915 04:25:46,600 --> 04:25:51,400 THANK YOU. 7916 04:25:51,400 --> 04:25:52,160 >>WE'RE GOING TO GO AHEAD AND 7917 04:25:52,160 --> 04:25:52,760 GET STARTED AGAIN. 7918 04:25:52,760 --> 04:25:54,760 I'M TAKING THE PLACE OF ASHLEY 7919 04:25:54,760 --> 04:25:57,080 VARGAS, WHO'S ILL TODAY. 7920 04:25:57,080 --> 04:25:58,600 I'LL BE INTRODUCING SESSION 7921 04:25:58,600 --> 04:26:01,200 3 AND SERVING AS MODERATOR. 7922 04:26:01,200 --> 04:26:05,440 SO WE HEARD A LOT IN THE FIRST 7923 04:26:05,440 --> 04:26:10,880 HALF OF THE DAY ABOUT RESEARCH 7924 04:26:10,880 --> 04:26:15,160 RESULTS BEING RETURNED IN LARGE 7925 04:26:15,160 --> 04:26:16,800 VOLUME, AND A WIDE VARIETY OF 7926 04:26:16,800 --> 04:26:19,320 RESEARCH RESULTS THAT THE ECHO 7927 04:26:19,320 --> 04:26:21,040 PROGRAM IS GENERATING AND 7928 04:26:21,040 --> 04:26:23,520 PLANNING TO RETURN, BUT THAT 7929 04:26:23,520 --> 04:26:27,200 RAISES THE QUESTION OF HOW TO 7930 04:26:27,200 --> 04:26:27,960 DECIDE WHICH INDIVIDUAL RESULTS 7931 04:26:27,960 --> 04:26:31,040 TO RETURN TO PARTICIPANTS. 7932 04:26:31,040 --> 04:26:33,720 THAT'S THE TOPIC OF SESSION 3. 7933 04:26:33,720 --> 04:26:37,760 OUR CHAIR IS BENJAMIN BERKMAN OF 7934 04:26:37,760 --> 04:26:41,080 THE NIH. 7935 04:26:41,080 --> 04:26:43,680 THEN WE WILL ALSO HEAR, AFTER HE 7936 04:26:43,680 --> 04:26:45,560 SPEAKS FIRST, FROM ADRIANA ARCIA 7937 04:26:45,560 --> 04:26:47,560 OF THE UNIVERSITY OF SAN DIEGO, 7938 04:26:47,560 --> 04:26:50,600 THEN JULIE SAPP, ALSO FROM THE 7939 04:26:50,600 --> 04:26:52,720 NIH, AND THEN RACHEL 7940 04:26:52,720 --> 04:26:54,040 MORELLO-FROSCH FROM THE 7941 04:26:54,040 --> 04:26:54,760 UNIVERSITY OF CALIFORNIA, 7942 04:26:54,760 --> 04:26:55,440 BERKELEY. 7943 04:26:55,440 --> 04:26:56,840 AND OUR DISCUSSANT FOR THIS 7944 04:26:56,840 --> 04:27:01,960 SESSION IS CARMEN VELEZ VEGA 7945 04:27:01,960 --> 04:27:03,480 FROM UNIVERSITY OF PUERTO RICO 7946 04:27:03,480 --> 04:27:04,800 AND ALSO AN ECHO P.I. 7947 04:27:04,800 --> 04:27:07,080 SO WITH THAT, I'LL INVITE BEN 7948 04:27:07,080 --> 04:27:17,160 UP. 7949 04:27:23,600 --> 04:27:24,960 >>SO THANK YOU FOR HAVING ME. 7950 04:27:24,960 --> 04:27:28,640 I AM EXCITED TO BE HERE. 7951 04:27:28,640 --> 04:27:31,760 SO MY JOB IS TO INTRODUCE SH 7952 04:27:31,760 --> 04:27:33,200 SESSION ABOUT WHAT KINDS OF 7953 04:27:33,200 --> 04:27:37,120 RESULTS WE SHOULD THINK ABOUT 7954 04:27:37,120 --> 04:27:38,520 RETURNING, AND INTRODUCE SOME 7955 04:27:38,520 --> 04:27:39,960 ISSUES AND QUESTIONS ABOUT 7956 04:27:39,960 --> 04:27:41,680 FEASIBILITY FOR RETURN. 7957 04:27:41,680 --> 04:27:43,560 I SHOULD SAY I'M A FEDERAL 7958 04:27:43,560 --> 04:27:45,120 EMPLOYEE, SOMETIMES I SAY 7959 04:27:45,120 --> 04:27:45,680 CONTROVERSIAL THINGS AND SO 7960 04:27:45,680 --> 04:27:47,520 NOTHING THAT I SAY HERE 7961 04:27:47,520 --> 04:27:50,560 REPRESENTS THE VIEWS OF THE 7962 04:27:50,560 --> 04:27:51,160 FEDERAL GOVERNMENT OR ANYONE 7963 04:27:51,160 --> 04:27:52,360 THAT GETS TO MAKE ACTUAL 7964 04:27:52,360 --> 04:27:55,200 DECISIONS IN THE WORLD. 7965 04:27:55,200 --> 04:28:05,720 DO I HAVE TO DO SOMETHING TO -- 7966 04:28:16,800 --> 04:28:17,160 GOOD. 7967 04:28:17,160 --> 04:28:18,040 SORRY. 7968 04:28:18,040 --> 04:28:19,680 OKAY. 7969 04:28:19,680 --> 04:28:20,200 SO OVERVIEW. 7970 04:28:20,200 --> 04:28:22,000 LET ME JUST GIVE YOU A SENSE OF 7971 04:28:22,000 --> 04:28:22,960 WHAT I WANT TO TALK ABOUT. 7972 04:28:22,960 --> 04:28:24,720 I'M GOING TO GIVE YOU SOME BROAD 7973 04:28:24,720 --> 04:28:25,800 IDEAS ABOUT CATEGORIES OF 7974 04:28:25,800 --> 04:28:26,120 RESULTS. 7975 04:28:26,120 --> 04:28:29,320 SOME OF WHICH WILL ECHO THINGS 7976 04:28:29,320 --> 04:28:31,040 THAT JEFF AND KYLE SAID EARLIER. 7977 04:28:31,040 --> 04:28:32,160 I'M GOING TO GIVE YOU A 7978 04:28:32,160 --> 04:28:33,440 FRAMEWORK FOR THINKING ABOUT 7979 04:28:33,440 --> 04:28:38,720 RETURNING RESEARCH RESULTS. 7980 04:28:38,720 --> 04:28:42,440 I WANT TO TALK ABOUT THE ISSUE 7981 04:28:42,440 --> 04:28:43,440 ABOUT WHETHER -- WHEN THEY HAVE 7982 04:28:43,440 --> 04:28:45,720 A DUTY TO LOOK FOR SPECIFIC 7983 04:28:45,720 --> 04:28:47,560 RESEARCH RESULTS OR WHEN IT'S 7984 04:28:47,560 --> 04:28:48,560 SUFFICIENT TO STUMBLE UPON 7985 04:28:48,560 --> 04:28:48,880 THINGS. 7986 04:28:48,880 --> 04:28:51,000 I WANT TO TALK ABOUT THIS BIG 7987 04:28:51,000 --> 04:28:51,720 QUESTION AT LEAST I'VE THOUGHT A 7988 04:28:51,720 --> 04:28:53,800 LOT ABOUT, WHEN DO YOU DRAW 7989 04:28:53,800 --> 04:28:54,400 DISTINCTIONS BETWEEN DIFFERENT 7990 04:28:54,400 --> 04:28:56,000 KINDS OF STUDIES, ARE THERE SOME 7991 04:28:56,000 --> 04:28:57,080 STUDIES THAT HAVE TO RETURN 7992 04:28:57,080 --> 04:28:58,720 RESULTS, SOME THAT SHOULD RETURN 7993 04:28:58,720 --> 04:29:01,320 RESULTS BUT HAVE MORE OF AN 7994 04:29:01,320 --> 04:29:01,920 OPTION, OR ARE THERE KINDS OF 7995 04:29:01,920 --> 04:29:03,320 STUDIES WHERE, GIVEN THE NATURE 7996 04:29:03,320 --> 04:29:04,520 OF THE STUDY AND THE 7997 04:29:04,520 --> 04:29:06,160 RELATIONSHIP THEY HAVE WITH 7998 04:29:06,160 --> 04:29:06,920 PARTICIPANTS, MAYBE THEY DON'T 7999 04:29:06,920 --> 04:29:09,880 HAVE TO RETURN RESULTS AT ALL. 8000 04:29:09,880 --> 04:29:11,720 AND THEN ANOTHER VERY 8001 04:29:11,720 --> 04:29:14,040 CONTROVERSIAL TOPIC ABOUT 8002 04:29:14,040 --> 04:29:15,120 SOLICITING PARTICIPANT 8003 04:29:15,120 --> 04:29:15,880 PREFERENCES. 8004 04:29:15,880 --> 04:29:16,760 WHEN DO YOU HAVE TO ASK, WHEN 8005 04:29:16,760 --> 04:29:18,960 CAN YOU SORT OF HAVE A DEFAULT 8006 04:29:18,960 --> 04:29:19,480 AND TELL PEOPLE WHAT YOUR 8007 04:29:19,480 --> 04:29:22,480 GENERAL PLAN IS. 8008 04:29:22,480 --> 04:29:23,680 AND THEN I'LL TALK ABOUT ANOTHER 8009 04:29:23,680 --> 04:29:25,320 COUPLE OF POLICY ISSUES QUICKLY. 8010 04:29:25,320 --> 04:29:26,640 SO FIRST I JUST WANT TO TALK 8011 04:29:26,640 --> 04:29:29,240 ABOUT SOME TERMINOLOGY, SO MAYBE 8012 04:29:29,240 --> 04:29:30,440 THIS CAN HELP US IN OUR 8013 04:29:30,440 --> 04:29:31,240 DISCUSSION. 8014 04:29:31,240 --> 04:29:32,960 THERE ARE REALLY THREE KINDS OF 8015 04:29:32,960 --> 04:29:35,280 RESULTS THAT I THINK ABOUT. 8016 04:29:35,280 --> 04:29:36,080 THEY'RE PRIMARY RESEARCH 8017 04:29:36,080 --> 04:29:36,600 RESULTS. 8018 04:29:36,600 --> 04:29:39,360 THESE ARE THINGS RELATED TO THE 8019 04:29:39,360 --> 04:29:41,560 CONDITION OR QUESTION UNDER 8020 04:29:41,560 --> 04:29:42,360 INVESTIGATION. 8021 04:29:42,360 --> 04:29:43,640 SO IF YOU'RE DOING RESEARCH ON 8022 04:29:43,640 --> 04:29:46,760 HEART DISEASE OR ENVIRONMENTAL 8023 04:29:46,760 --> 04:29:47,560 EXPOSURE, THESE ARE THINGS 8024 04:29:47,560 --> 04:29:48,400 RELATED TO THAT SPECIFIC 8025 04:29:48,400 --> 04:29:49,400 RESEARCH QUESTION. 8026 04:29:49,400 --> 04:29:51,680 THEN THERE ARE INCIDENTAL 8027 04:29:51,680 --> 04:29:52,320 QUESTIONS, THINGS THAT COME UP 8028 04:29:52,320 --> 04:29:53,440 IN THE COURSE OF DOING THE 8029 04:29:53,440 --> 04:29:55,200 RESEARCH BUT AREN'T QUITE 8030 04:29:55,200 --> 04:29:57,720 RELATED TO THE RESEARCH. 8031 04:29:57,720 --> 04:30:03,400 AND THEN THERE'S SECONDARY ANAL 8032 04:30:03,400 --> 04:30:05,040 CLINICAL RESULTS UNRELATED TO 8033 04:30:05,040 --> 04:30:06,000 THE QUESTIONS YOU'RE ASKING BUT 8034 04:30:06,000 --> 04:30:07,160 YOU'RE ACTIVELY GOING TO LOOK 8035 04:30:07,160 --> 04:30:08,000 FOR THEM. 8036 04:30:08,000 --> 04:30:09,840 SO IN GENETICS, WHICH IS THE 8037 04:30:09,840 --> 04:30:10,520 AREA I KNOW THE BEST, IF YOU'RE 8038 04:30:10,520 --> 04:30:13,040 DOING SEQUENCING, TO ASK A 8039 04:30:13,040 --> 04:30:14,000 SPECIFIC QUESTION ABOUT, SAY, 8040 04:30:14,000 --> 04:30:16,320 HEART DISEASE BUT THEN YOU 8041 04:30:16,320 --> 04:30:17,080 INTENTIONALLY GO LOOK FOR ALL 8042 04:30:17,080 --> 04:30:18,640 SORTS OF THINGS ABOUT CANCER AND 8043 04:30:18,640 --> 04:30:20,120 OTHER GENETIC CONDITIONS, THAT 8044 04:30:20,120 --> 04:30:22,080 WOULD BE A SECONDARY ANALYSIS. 8045 04:30:22,080 --> 04:30:24,040 I THINK IN THE ECHO PROGRAM, 8046 04:30:24,040 --> 04:30:25,480 GIVEN WHAT I UNDERSTAND ABOUT 8047 04:30:25,480 --> 04:30:26,600 IT, WE'RE PRIMARILY TALKING 8048 04:30:26,600 --> 04:30:27,680 ABOUT PRIMARY RESEARCH RESULTS, 8049 04:30:27,680 --> 04:30:29,640 BECAUSE THESE ARE ALL THINGS 8050 04:30:29,640 --> 04:30:30,640 THAT ARE BEING COLLECTED FOR A 8051 04:30:30,640 --> 04:30:33,160 PARTICULAR QUESTION THAT AREN'T 8052 04:30:33,160 --> 04:30:35,320 GOING TO BE TONS OF CASES OF 8053 04:30:35,320 --> 04:30:36,880 INCIDENTAL OR SECONDARY RESULTS 8054 04:30:36,880 --> 04:30:38,600 BUT THERE COULD BE. 8055 04:30:38,600 --> 04:30:39,840 SO A FRAMEWORK FOR THINKING 8056 04:30:39,840 --> 04:30:41,680 ABOUT THIS, AND I SHOULD PAUSE 8057 04:30:41,680 --> 04:30:44,000 AND SAY, YOU KNOW, RESEARCH 8058 04:30:44,000 --> 04:30:45,880 STUDIES CAN GIVE BACK ANY 8059 04:30:45,880 --> 04:30:47,200 RESULTS THAT THEY WANT AS LONG 8060 04:30:47,200 --> 04:30:51,360 AS THEY'RE DOING MORE GOOD THAN 8061 04:30:51,360 --> 04:30:52,240 HARM. 8062 04:30:52,240 --> 04:30:53,440 THE QUESTION I THINK ABOUT IS, 8063 04:30:53,440 --> 04:30:54,960 WHAT'S SORT OF THE LOWEST BAR? 8064 04:30:54,960 --> 04:30:58,040 WHERE'S THE THRESHOLD WHERE THEY 8065 04:30:58,040 --> 04:30:59,480 HAVE TO -- WHERE RESEARCH 8066 04:30:59,480 --> 04:31:00,400 PROGRAMS HAVE TO GIVE BACK A 8067 04:31:00,400 --> 04:31:01,840 CERTAIN AMOUNT OF RESULTS? 8068 04:31:01,840 --> 04:31:03,520 THEY'RE ALWAYS ALLOWED TO GIVE 8069 04:31:03,520 --> 04:31:06,080 BACK MORE THAN WH WHATEVER THATW 8070 04:31:06,080 --> 04:31:07,920 THRESHOLD IS, BUT WHEN THINKING 8071 04:31:07,920 --> 04:31:12,560 ABOUT HOW TO DEFINE THAT 8072 04:31:12,560 --> 04:31:14,120 THRESHOLD, PEOPLE THINK ABOUT -- 8073 04:31:14,120 --> 04:31:17,160 AT LEAST IN EARLY GENETIC -- 8074 04:31:17,160 --> 04:31:19,000 THOUGHT ABOUT CLINICAL 8075 04:31:19,000 --> 04:31:19,880 RELEVANCE, CLINICAL 8076 04:31:19,880 --> 04:31:21,240 SIGNIFICANCE, CLINICAL UTILITY 8077 04:31:21,240 --> 04:31:22,000 AND WE'VE SORT OF DISTILLED THIS 8078 04:31:22,000 --> 04:31:23,040 DOWN INTO THREE MAIN IDEAS. 8079 04:31:23,040 --> 04:31:25,160 YOU WANT TO RETURN RESULTS THAT 8080 04:31:25,160 --> 04:31:26,440 ARE VALID, THAT ACTUALLY MEAN 8081 04:31:26,440 --> 04:31:28,640 WHAT YOU THINK THEY MEAN, THAT 8082 04:31:28,640 --> 04:31:30,960 HAVE VALUE TO PARTICIPANTS, AND 8083 04:31:30,960 --> 04:31:33,280 WHERE THERE'S VOLITION, WHERE 8084 04:31:33,280 --> 04:31:35,240 THEY WANT THEM, WHERE THERE'S 8085 04:31:35,240 --> 04:31:37,320 SOMETHING -- WHERE THEY'VE 8086 04:31:37,320 --> 04:31:38,320 INDICATED THAT YOU HAVE CONSENT 8087 04:31:38,320 --> 04:31:42,240 TO GET IT. 8088 04:31:42,240 --> 04:31:44,640 I'M GOING TO FLY THROUGH THESE 8089 04:31:44,640 --> 04:31:46,200 BUT I PUT CITATIONS TO A WORK 8090 04:31:46,200 --> 04:31:47,560 THAT I AND OTHERS HAVE DONE SO 8091 04:31:47,560 --> 04:31:49,800 IF YOU HAVE ACCESS TO THE 8092 04:31:49,800 --> 04:31:52,320 SLIDES, YOU CAN SEE AND READ OUR 8093 04:31:52,320 --> 04:31:53,280 PAPERS IN MORE DETAIL. 8094 04:31:53,280 --> 04:31:55,080 JEFF TALKED ABOUT THIS EARLIER, 8095 04:31:55,080 --> 04:31:56,120 BUT THE WAY I THINK ABOUT VALUE 8096 04:31:56,120 --> 04:31:58,840 IS IN TERMS OF A FEW DIFFERENT 8097 04:31:58,840 --> 04:31:59,520 DIMENSIONS. 8098 04:31:59,520 --> 04:32:01,480 THERE'S SORT OF THE 8099 04:32:01,480 --> 04:32:03,040 DIRECT/INDIRECT DIMENSION. 8100 04:32:03,040 --> 04:32:05,000 SOMETIMES VALUE CAN DIRECTLY 8101 04:32:05,000 --> 04:32:06,440 INDICATE TO A PARTICIPANT 8102 04:32:06,440 --> 04:32:09,920 SOMETHING THAT THEY CAN DO, 8103 04:32:09,920 --> 04:32:10,520 EITHER PREVENTIVE SCREENING OR 8104 04:32:10,520 --> 04:32:13,360 EARLY TREATMENT OR LIFESTYLE 8105 04:32:13,360 --> 04:32:18,240 CHANGE OR CHANGING/AVOIDING 8106 04:32:18,240 --> 04:32:18,760 ENVIRONMENTAL EXPOSURE. 8107 04:32:18,760 --> 04:32:19,640 AND THEN THERE ARE THINGS THAT 8108 04:32:19,640 --> 04:32:21,200 ARE MORE INDIRECT, WHERE THERE'S 8109 04:32:21,200 --> 04:32:23,400 SOME SORT OF INTERVENING STEP, 8110 04:32:23,400 --> 04:32:24,920 SO LEARNING SOMETHING THAT 8111 04:32:24,920 --> 04:32:25,880 MIGHT, 10 YEARS FROM NOW, TELL 8112 04:32:25,880 --> 04:32:28,080 YOU SOMETHING ABOUT REPRODUCTIVE 8113 04:32:28,080 --> 04:32:30,960 DECISION THAT YOU HAVE TO MAKE. 8114 04:32:30,960 --> 04:32:33,680 OR SHORTENING A DIAGNOSTIC 8115 04:32:33,680 --> 04:32:34,040 ODYSSEY. 8116 04:32:34,040 --> 04:32:36,120 SO THERE'S THIS DIRECT/INDIRECT 8117 04:32:36,120 --> 04:32:37,520 DISTINCTION AND THEN THERE'S 8118 04:32:37,520 --> 04:32:38,480 THIS DISTENTION BETWEEN CLINICAL 8119 04:32:38,480 --> 04:32:39,600 AND PERSONAL UTILITY. 8120 04:32:39,600 --> 04:32:41,560 SO CLINICAL UTILITY IS 8121 04:32:41,560 --> 04:32:43,320 SOMETHING -- TREATMENT YOU CAN 8122 04:32:43,320 --> 04:32:43,920 TAKE, PREVENTIVE STEP YOU CAN 8123 04:32:43,920 --> 04:32:45,160 TAKE, VERSUS PERSONAL UTILITY, 8124 04:32:45,160 --> 04:32:47,120 WHICH IS JUST SORT OF KNOWLEDGE 8125 04:32:47,120 --> 04:32:49,880 THAT HELPS YOU LIVE YOUR LIFE 8126 04:32:49,880 --> 04:32:50,160 DIFFERENTLY. 8127 04:32:50,160 --> 04:32:53,560 AND I'M NOT SAYING THERE'S 8128 04:32:53,560 --> 04:32:54,800 BETTER OR WORSE BUT SOMETIMES 8129 04:32:54,800 --> 04:32:56,000 PEOPLE DRAW DISTINCTIONS BETWEEN 8130 04:32:56,000 --> 04:32:57,520 THESE WHEN THINKING ABOUT WHERE 8131 04:32:57,520 --> 04:33:02,000 TO DRAW THAT THRESHOLD. 8132 04:33:02,000 --> 04:33:03,680 AND KEY IN SOME OF THESE 8133 04:33:03,680 --> 04:33:05,160 DISTINCTIONS IS THE CONCEPT OF 8134 04:33:05,160 --> 04:33:07,040 ACTION ABILITY, THE IDEA THAT 8135 04:33:07,040 --> 04:33:08,400 YOU CAN DO SOMETHING WITH THE 8136 04:33:08,400 --> 04:33:08,680 INFORMATION. 8137 04:33:08,680 --> 04:33:10,000 IF YOU CAN DO SOMETHING WITH THE 8138 04:33:10,000 --> 04:33:11,240 INFORMATION THAT HEIGHTENS THE 8139 04:33:11,240 --> 04:33:12,680 ARGUMENTS THAT YOU CAN MAKE THAT 8140 04:33:12,680 --> 04:33:15,600 THIS IS SOMETHING THAT YOU 8141 04:33:15,600 --> 04:33:16,040 SHOULD RETURN. 8142 04:33:16,040 --> 04:33:17,720 IF THERE'S NOTHING TO DO WITH 8143 04:33:17,720 --> 04:33:18,320 THE INFORMATION, IT MIGHT STILL 8144 04:33:18,320 --> 04:33:19,440 BE VALUABLE, STILL MIGHT BE 8145 04:33:19,440 --> 04:33:20,440 SOMETHING YOU WANT TO RETURN BUT 8146 04:33:20,440 --> 04:33:22,160 THE ARGUMENTS FOR RETURNING IT 8147 04:33:22,160 --> 04:33:25,240 ARE A LITTLE BIT WEAKER. 8148 04:33:25,240 --> 04:33:26,200 SO TO THIS QUESTION ABOUT 8149 04:33:26,200 --> 04:33:27,960 WHETHER OR NOT THERE'S A DUTY TO 8150 04:33:27,960 --> 04:33:32,040 LOOK, OR WHETHER RESEARCH 8151 04:33:32,040 --> 04:33:33,160 PROGRAMS SHOULD JUST SORT OF 8152 04:33:33,160 --> 04:33:34,400 STUMBLE UPON THINGS, THE MAIN 8153 04:33:34,400 --> 04:33:37,000 REASON WE THINK ABOUT IMPOSING A 8154 04:33:37,000 --> 04:33:39,120 DUTY TO LOOK ON A RESEARCH 8155 04:33:39,120 --> 04:33:41,040 PROGRAM IS THE IDEA OF 8156 04:33:41,040 --> 04:33:42,240 BENEFICENCE, THE IDEA THAT SOME 8157 04:33:42,240 --> 04:33:44,680 GENETIC OR OTHER KINDS OF 8158 04:33:44,680 --> 04:33:45,280 INFORMATION COULD BE IMPORTANT 8159 04:33:45,280 --> 04:33:46,440 TO THEM, CLINICALLY IMPORTANT TO 8160 04:33:46,440 --> 04:33:50,400 THEM. 8161 04:33:50,400 --> 04:33:51,680 BUT HERE'S THE TENSION, AND 8162 04:33:51,680 --> 04:33:53,040 WE'VE BEEN TALKING ABOUT THIS A 8163 04:33:53,040 --> 04:33:53,760 LITTLE BIT THROUGHOUT THE DAY. 8164 04:33:53,760 --> 04:33:55,320 RESEARCH IS NOT THE SAME THING 8165 04:33:55,320 --> 04:33:56,960 AS CLINICAL CARE. 8166 04:33:56,960 --> 04:33:57,680 RESEARCHERS DON'T HAVE THE SAME 8167 04:33:57,680 --> 04:34:00,680 SORT OF RELATIONSHIP WITH A 8168 04:34:00,680 --> 04:34:02,000 PARTICIPANT AS A DOCTOR DOES 8169 04:34:02,000 --> 04:34:05,520 WITH THE PATIENT, AND SO YOU 8170 04:34:05,520 --> 04:34:07,480 GENERALLY DON'T EXPECT 8171 04:34:07,480 --> 04:34:09,000 RESEARCHERS TO BE PROVIDING 8172 04:34:09,000 --> 04:34:11,120 PARTICIPANTS WITH THE FULL RANGE 8173 04:34:11,120 --> 04:34:12,320 OF CLINICAL NEEDS THAT THEY 8174 04:34:12,320 --> 04:34:15,920 HAVE. 8175 04:34:15,920 --> 04:34:16,680 SOMETIMES THEY HAVE TO PROVIDE 8176 04:34:16,680 --> 04:34:17,680 SOME OF THEM BUT NOT ALL OF 8177 04:34:17,680 --> 04:34:18,080 THEM. 8178 04:34:18,080 --> 04:34:23,640 SO HOW DO YOU TEASE OUT THAT 8179 04:34:23,640 --> 04:34:25,040 DISTINCTION? 8180 04:34:25,040 --> 04:34:26,560 SO I THINK KYLE REFERRED TO THIS 8181 04:34:26,560 --> 04:34:27,360 EARLIER, THERE'S THIS IDEA OF 8182 04:34:27,360 --> 04:34:29,160 THE DUTY TO RESCUE OR ANCILLARY 8183 04:34:29,160 --> 04:34:35,560 CARE IS THE RULE SPECIFIC DUTY 8184 04:34:35,560 --> 04:34:36,640 RESEARCHERS TALK ABOUT WHERE I 8185 04:34:36,640 --> 04:34:38,360 THINK KYLE ALREADY PUT THESE UP, 8186 04:34:38,360 --> 04:34:40,520 SO GENERALLY WHEN THERE'S THE 8187 04:34:40,520 --> 04:34:42,400 INFORMATION HAS A LOT OF BENEFIT 8188 04:34:42,400 --> 04:34:44,440 TO PEOPLE, IT'S NOT THAT HARD TO 8189 04:34:44,440 --> 04:34:48,000 GIVE TO THEM, AND YOU HAVE A 8190 04:34:48,000 --> 04:34:48,880 UNIQUE OPPORTUNITY, THE 8191 04:34:48,880 --> 04:34:49,880 RESEARCHER HAS A UNIQUE 8192 04:34:49,880 --> 04:34:51,080 OPPORTUNITY TO HELP THEM, THOSE 8193 04:34:51,080 --> 04:34:53,080 ARE GENERALLY THE TIMES WHEN WE 8194 04:34:53,080 --> 04:34:55,360 THINK IT MIGHT BE MORE PLAUSIBLE 8195 04:34:55,360 --> 04:34:57,440 THAT THERE'S A DUTY TO LOOK, 8196 04:34:57,440 --> 04:34:58,760 THAT THERE'S MORE OF AN 8197 04:34:58,760 --> 04:35:00,280 OBLIGATION TO ACTIVELY FIND AND 8198 04:35:00,280 --> 04:35:01,280 THEN RETURN CERTAIN KINDS OF 8199 04:35:01,280 --> 04:35:04,720 INFORMATION. 8200 04:35:04,720 --> 04:35:06,440 THE REASON I LIKE THIS FRAMEWORK 8201 04:35:06,440 --> 04:35:08,480 IS BECAUSE IT BALANCES THE 8202 04:35:08,480 --> 04:35:09,440 BENEFIT TO THE PARTICIPANT WITH 8203 04:35:09,440 --> 04:35:12,080 THE BURDEN TO THE RESEARCH 8204 04:35:12,080 --> 04:35:12,400 ENTERPRISE. 8205 04:35:12,400 --> 04:35:13,200 IT TAKES BOTH INTO 8206 04:35:13,200 --> 04:35:14,200 CONSIDERATION, AND GIVES YOU 8207 04:35:14,200 --> 04:35:15,720 FRAMEWORK FOR THINKING ABOUT HOW 8208 04:35:15,720 --> 04:35:18,200 TO BALANCE THOSE TWO COMPETING 8209 04:35:18,200 --> 04:35:22,880 INTERESTS. 8210 04:35:22,880 --> 04:35:24,120 BUT THEN WE GET TO THIS HARD 8211 04:35:24,120 --> 04:35:25,480 QUESTION ABOUT HOW TO DRAW A 8212 04:35:25,480 --> 04:35:26,280 DISTINCTION BETWEEN RESEARCH 8213 04:35:26,280 --> 04:35:28,520 PROGRAMS THAT SHOULD DEFINITELY 8214 04:35:28,520 --> 04:35:30,080 RETURN FINDINGS AND OTHER ONES 8215 04:35:30,080 --> 04:35:32,920 THAT MIGHT NOT HAVE TO. 8216 04:35:32,920 --> 04:35:36,480 SO FOR EXAMPLE, IN THE NHGRI AND 8217 04:35:36,480 --> 04:35:37,720 IN THE NIH INTRAMURAL PROGRAM, 8218 04:35:37,720 --> 04:35:40,560 WE HAD COLLEAGUES AT NIEHS 8219 04:35:40,560 --> 04:35:43,120 SIMILAR TO THE ECHO STUDY, THIS 8220 04:35:43,120 --> 04:35:44,360 BIG, BIG ENVIRONMENTAL HEALTH 8221 04:35:44,360 --> 04:35:47,200 STUDY, AND THEY'RE DOING GENETIC 8222 04:35:47,200 --> 04:35:47,800 SEQUENCING, AND THE QUESTION 8223 04:35:47,800 --> 04:35:52,120 WAS, ARE THEY SIMILAR ENOUGH TO 8224 04:35:52,120 --> 04:35:53,440 THE MORE DIRECTLY CLINICAL KINDS 8225 04:35:53,440 --> 04:35:55,120 OF PROTOCOLS THAT THEY SHOULD 8226 04:35:55,120 --> 04:35:56,520 HAVE THE SAME KINDS OF 8227 04:35:56,520 --> 04:35:57,640 EXPECTATIONS THAT THEY'RE GOING 8228 04:35:57,640 --> 04:35:59,280 TO RETURN GENETIC INCIDENTAL 8229 04:35:59,280 --> 04:35:59,600 FINDINGS? 8230 04:35:59,600 --> 04:36:02,240 AND IT WAS AN OPEN QUESTION, AND 8231 04:36:02,240 --> 04:36:03,240 PEOPLE WENT BACK AND FORTH. 8232 04:36:03,240 --> 04:36:05,200 BUT THE IDEA IS, MAYBE THERE ARE 8233 04:36:05,200 --> 04:36:06,920 DIFFERENCES BETWEEN RESEARCH 8234 04:36:06,920 --> 04:36:10,600 PROGRAMS THAT WOULD HELP US SORT 8235 04:36:10,600 --> 04:36:11,920 WHICH ONES SHOULD OR SHOULDN'T 8236 04:36:11,920 --> 04:36:16,080 HAVE TO RETURN INFORMATION TO 8237 04:36:16,080 --> 04:36:16,960 PARTICIPANTS. 8238 04:36:16,960 --> 04:36:19,360 SO THE ARGUMENT I'VE MADE BEFORE 8239 04:36:19,360 --> 04:36:20,960 IS THE STRONGER THE 8240 04:36:20,960 --> 04:36:21,840 RELATIONSHIP, IGNORE THE 8241 04:36:21,840 --> 04:36:23,800 CLINICAL RELATIONSHIP, CLINICAL 8242 04:36:23,800 --> 04:36:25,200 RELATIONSHIP IS UP HERE, BUT YOU 8243 04:36:25,200 --> 04:36:26,080 CAN STILL HAVE STRONG 8244 04:36:26,080 --> 04:36:27,000 RELATIONSHIPS THAT ARE 8245 04:36:27,000 --> 04:36:27,320 NON-CLINICAL. 8246 04:36:27,320 --> 04:36:29,160 THE STRONGER THE RELATIONSHIP 8247 04:36:29,160 --> 04:36:32,920 BETWEEN THE STUDY AND THE 8248 04:36:32,920 --> 04:36:34,680 PARTICIPANT, THE MORE WE SHOULD 8249 04:36:34,680 --> 04:36:36,520 PRESUME IN FAVOR OF DISCLOSURE. 8250 04:36:36,520 --> 04:36:42,560 SO THESE ECHO COHORTS THAT HAVE 8251 04:36:42,560 --> 04:36:44,320 20-YEAR RELATIONSHIPS WITH THEIR 8252 04:36:44,320 --> 04:36:44,880 PARTICIPANTS, THOSE ARE THE 8253 04:36:44,880 --> 04:36:46,200 KINDS OF STRONG RELATIONSHIPS 8254 04:36:46,200 --> 04:36:47,520 THAT ARGUE IN FAVOR OF A MORE 8255 04:36:47,520 --> 04:36:49,160 EXPANSIVE KIND OF DISCLOSURE. 8256 04:36:49,160 --> 04:36:51,480 IF IT'S A STUDY WHERE YOU HAVE A 8257 04:36:51,480 --> 04:36:52,680 ONE-TIME BLOOD DRAW AND THAT'S 8258 04:36:52,680 --> 04:36:54,080 THE ENTIRE EXTENT OF YOUR 8259 04:36:54,080 --> 04:36:55,800 INTERACTION WITH THE RESEARCH 8260 04:36:55,800 --> 04:36:57,160 TEAM, MAYBE THERE'S LESS OF AN 8261 04:36:57,160 --> 04:37:00,600 OBLIGATION IN THOSE KINDS OF 8262 04:37:00,600 --> 04:37:01,000 SITUATIONS. 8263 04:37:01,000 --> 04:37:04,640 SO JUST TO GIVE YOU SOME 8264 04:37:04,640 --> 04:37:05,280 EXAMPLES, IF YOU HAVE SECONDARY 8265 04:37:05,280 --> 04:37:07,560 RESEARCH WHERE THE SAMPLES ARE 8266 04:37:07,560 --> 04:37:08,960 COLLECTED ELSEWHERE, THE 8267 04:37:08,960 --> 04:37:09,720 RESEARCHERS ARE JUST TAKING 8268 04:37:09,720 --> 04:37:11,760 THESE OTHER SAMPLES, MAYBE 8269 04:37:11,760 --> 04:37:13,200 THEY'RE DE-IDENTIFIED, I THINK 8270 04:37:13,200 --> 04:37:14,520 IN THOSE KINDS OF CASES, 8271 04:37:14,520 --> 04:37:20,560 GENERALLY YOU DON'T HAVE TO BE 8272 04:37:20,560 --> 04:37:22,600 RETURNING RESULTS TO PEOPLE. 8273 04:37:22,600 --> 04:37:23,800 NOW YOU COULD. 8274 04:37:23,800 --> 04:37:24,600 IT MAY BE HARD BECAUSE YOU MIGHT 8275 04:37:24,600 --> 04:37:26,160 NOT HAVE A RELATIONSHIP WITH 8276 04:37:26,160 --> 04:37:27,360 THOSE PEOPLE BUT YOU COULD, BUT 8277 04:37:27,360 --> 04:37:28,880 YOU WOULDN'T NECESSARILY HAVE 8278 04:37:28,880 --> 04:37:29,040 TO. 8279 04:37:29,040 --> 04:37:32,080 STUDIES THAT INVOLVE EXTENSIVE 8280 04:37:32,080 --> 04:37:34,280 REPEAT INTERACTIONS LIKE ECHO, I 8281 04:37:34,280 --> 04:37:34,840 THINK THOSE ARE ONES THAT 8282 04:37:34,840 --> 04:37:36,600 PROBABLY SHOULD BE RETURNING 8283 04:37:36,600 --> 04:37:40,240 FINDINGS TO PEOPLE. 8284 04:37:40,240 --> 04:37:42,280 THEN THE ONE-TIME INTERACTION, I 8285 04:37:42,280 --> 04:37:43,400 USE THE EXAMPLE OF ONE WHERE YOU 8286 04:37:43,400 --> 04:37:44,600 MIGHT NOT HAVE TO RETURN RESULTS 8287 04:37:44,600 --> 04:37:47,040 BUT THAT'S NOT NECESSARILY TRUE. 8288 04:37:47,040 --> 04:37:48,320 THERE MIGHT BE CASES, WE WERE 8289 04:37:48,320 --> 04:37:49,440 TALKING EARLIER ABOUT THE IDEA 8290 04:37:49,440 --> 04:37:53,720 OF A CENTRALLY CREATED RESOURCE 8291 04:37:53,720 --> 04:37:54,280 THAT HELPS RETURN RESULTS TO 8292 04:37:54,280 --> 04:37:54,520 PEOPLE. 8293 04:37:54,520 --> 04:37:56,120 WELL, IF IT GOT REALLY EASY, IF 8294 04:37:56,120 --> 04:37:58,240 WE HAD THAT KIND OF -- IF ECHO 8295 04:37:58,240 --> 04:38:01,520 HAD A CENTRAL OFFICE THAT SORT 8296 04:38:01,520 --> 04:38:02,840 OF PREPARED AND WAS REALLY GOOD 8297 04:38:02,840 --> 04:38:05,040 AT RETURNING RESULTS TO PEOPLE, 8298 04:38:05,040 --> 04:38:06,040 WELL, THEN MAYBE EVEN IF PEOPLE 8299 04:38:06,040 --> 04:38:07,520 DIDN'T HAVE A TON OF INTERACTION 8300 04:38:07,520 --> 04:38:08,720 WITH THE RESEARCH TEAM, WE MIGHT 8301 04:38:08,720 --> 04:38:13,160 WANT TO EXPAND THE OBLIGATION TO 8302 04:38:13,160 --> 04:38:15,000 THOSE LOWER INTERACTION KINDS OF 8303 04:38:15,000 --> 04:38:15,480 STUDIES. 8304 04:38:15,480 --> 04:38:19,200 BUT THAT'S MORE DEBATABLE. 8305 04:38:19,200 --> 04:38:20,520 THAT'S AN OPEN QUESTION. 8306 04:38:20,520 --> 04:38:22,200 SO ONE MORE BIG ONE BEFORE I RUN 8307 04:38:22,200 --> 04:38:23,480 OUT OF TIME. 8308 04:38:23,480 --> 04:38:25,240 THERE'S BEEN A LOT OF DEBATE IN 8309 04:38:25,240 --> 04:38:30,040 THE GENETICS WORLD ABOUT 8310 04:38:30,040 --> 04:38:30,800 SOLICITING PREFERENCES. 8311 04:38:30,800 --> 04:38:32,480 WHEN PEOPLE ARE GOING TO BE 8312 04:38:32,480 --> 04:38:33,040 GETTING RESULTS BACK, DO YOU 8313 04:38:33,040 --> 04:38:34,880 HAVE TO ASK THEM EXPLICITLY FOR 8314 04:38:34,880 --> 04:38:36,240 THEIR PERMISSION OR CAN YOU JUST 8315 04:38:36,240 --> 04:38:37,640 SAY, HERE'S WHAT WE'RE GOING TO 8316 04:38:37,640 --> 04:38:39,960 RETURN TO YOU IF YOU HAVE A 8317 04:38:39,960 --> 04:38:42,360 QUESTION, YOU CAN ASK US ABOUT 8318 04:38:42,360 --> 04:38:45,240 IT, AND IN THE CONSENT FORMS, DO 8319 04:38:45,240 --> 04:38:46,360 YOU NEED A CHECK BOX, YOU NEED 8320 04:38:46,360 --> 04:38:47,960 TO SAY YES, I WANT THIS KIND OF 8321 04:38:47,960 --> 04:38:49,560 INFORMATION OR NO, I DON'T WANT 8322 04:38:49,560 --> 04:38:50,520 THIS KIND OF INFORMATION, OR CAN 8323 04:38:50,520 --> 04:38:53,520 YOU JUST HAVE A DEFAULT AND TELL 8324 04:38:53,520 --> 04:38:55,080 THEM WHAT YOU'RE GOING TO DO? 8325 04:38:55,080 --> 04:38:57,480 THE EARLY VIEW, 10, 15 YEARS 8326 04:38:57,480 --> 04:38:58,800 AGO, WAS THAT, YOU KNOW, YOU 8327 04:38:58,800 --> 04:39:00,960 SHOULD ONLY RETURN THINGS WHEN 8328 04:39:00,960 --> 04:39:01,880 YOU ACTIVELY GET THEM TO CHECK 8329 04:39:01,880 --> 04:39:07,360 THE BOX THAT SAYS YES, AND YOU 8330 04:39:07,360 --> 04:39:08,640 HAVE TO EXPLAIN THAT THEY HAVE A 8331 04:39:08,640 --> 04:39:10,000 RIGHT NOT TO KNOW AND YOU HAVE 8332 04:39:10,000 --> 04:39:14,040 TO GET THEM TO ACTIVELY SAY YES. 8333 04:39:14,040 --> 04:39:15,480 ABOUT 10 YEARS AGO, THERE WAS 8334 04:39:15,480 --> 04:39:17,680 THIS BIG BROUHAHA WHEN THE 8335 04:39:17,680 --> 04:39:18,680 AMERICAN COLLEGE OF MEDICAL 8336 04:39:18,680 --> 04:39:21,960 GENETICS AND GENOMICS BASICALLY 8337 04:39:21,960 --> 04:39:24,640 SAID NO, YOU DON'T HAVE TO ASK 8338 04:39:24,640 --> 04:39:26,400 PEOPLE, IT'S FINE IF YOU JUST 8339 04:39:26,400 --> 04:39:27,920 TELL THEM THE DEFAULT IS TO 8340 04:39:27,920 --> 04:39:29,600 RETURN THESE FINDINGS. 8341 04:39:29,600 --> 04:39:30,800 NOW I SHOULD BE CLEAR HERE, 8342 04:39:30,800 --> 04:39:32,560 THESE ARE FINDINGS THAT ARE 8343 04:39:32,560 --> 04:39:33,560 DIFFERENT THAN THE ONES WE'VE 8344 04:39:33,560 --> 04:39:35,000 BEEN TALKING ABOUT TODAY. 8345 04:39:35,000 --> 04:39:35,680 THESE ARE POTENTIALLY LIFE HIGH 8346 04:39:35,680 --> 04:39:36,880 PRESSURE SAVING KINDS OF 8347 04:39:36,880 --> 04:39:40,080 FINDINGS. 8348 04:39:40,080 --> 04:39:40,960 LIFE-SAVING KINDS OF FINDINGS, 8349 04:39:40,960 --> 04:39:42,680 THAT TELL YOU ABOUT A KIND OF 8350 04:39:42,680 --> 04:39:44,040 CANCER YOU NEED TO SCREEN FOR OR 8351 04:39:44,040 --> 04:39:45,480 IF YOU DON'T CATCH IT EARLY, 8352 04:39:45,480 --> 04:39:46,360 YOU'RE GOING TO DIE. 8353 04:39:46,360 --> 04:39:49,960 SO IT'S NOT EXACTLY LIKE THE -- 8354 04:39:49,960 --> 04:39:52,320 YOUR WATER HAS A SLIGHTLY 8355 04:39:52,320 --> 04:39:54,920 ELEVATED KIND OF CONTAMINANT OR 8356 04:39:54,920 --> 04:39:56,120 SOMETHING LIKE THAT, WHICH IS 8357 04:39:56,120 --> 04:39:57,560 ALSO STILL VERY IMPORTANT BUT 8358 04:39:57,560 --> 04:39:58,880 NOT SORT OF THAT IMMEDIATELY 8359 04:39:58,880 --> 04:40:00,040 POTENTIALLY LIFE-SAVING KIND OF 8360 04:40:00,040 --> 04:40:01,320 INFORMATION. 8361 04:40:01,320 --> 04:40:03,800 SO THERE WAS A HUGE UPROAR WHEN 8362 04:40:03,800 --> 04:40:06,800 ACMG MADE THIS CLAIM AND THEY 8363 04:40:06,800 --> 04:40:10,560 EVENTUALLY WALKED IT BACK, IT'S 8364 04:40:10,560 --> 04:40:13,680 STILL AN OPEN QUESTION, HOW MUCH 8365 04:40:13,680 --> 04:40:14,960 PERMISSION YOU ACTIVELY NEED TO 8366 04:40:14,960 --> 04:40:16,680 SEEK FROM PARTICIPANTS. 8367 04:40:16,680 --> 04:40:19,960 GENERALLY GETTING CONSENT IS 8368 04:40:19,960 --> 04:40:22,960 OBVIOUSLY A GOOD THING, BUT THE 8369 04:40:22,960 --> 04:40:23,960 PROBLEM IS THAT SOMETIMES PEOPLE 8370 04:40:23,960 --> 04:40:25,440 ARE GOING TO MAKE A MISTAKE, 8371 04:40:25,440 --> 04:40:26,560 THEY'RE GOING TO NOT REALIZE 8372 04:40:26,560 --> 04:40:28,480 WHAT THEY'RE SAYING NO TO, AND 8373 04:40:28,480 --> 04:40:30,120 SO IF YOU ASK THE QUESTION, 8374 04:40:30,120 --> 04:40:31,600 THERE'S GOING TO BE SOME NUMBER 8375 04:40:31,600 --> 04:40:33,880 OF PEOPLE WHO MAKE A MISTAKE AND 8376 04:40:33,880 --> 04:40:34,800 SAY NO WHEN THEY REALLY MEANT 8377 04:40:34,800 --> 04:40:36,760 YES AND I'VE GOT SOME DATA THAT 8378 04:40:36,760 --> 04:40:37,920 BACK THIS UP, BUT ON THE OTHER 8379 04:40:37,920 --> 04:40:40,160 HAND, ASKING PEOPLE IS GENERALLY 8380 04:40:40,160 --> 04:40:42,280 A GOOD THING AND IT ENHANCES 8381 04:40:42,280 --> 04:40:43,920 THEIR AUTONOMY AND GIVES THEM AN 8382 04:40:43,920 --> 04:40:51,440 OPPORTUNITY TO MAKE A CHOICE. 8383 04:40:51,440 --> 04:40:54,480 AND SO -- I'M A SKEPTIC, I'M 8384 04:40:54,480 --> 04:40:56,040 HAPPY TO TALK ABOUT THAT IN THE 8385 04:40:56,040 --> 04:40:57,480 DISCUSSION, BUT FROM MY DATA, 8386 04:40:57,480 --> 04:40:59,040 WHAT I'VE SEEN IS THAT IF PEOPLE 8387 04:40:59,040 --> 04:41:02,280 SAY NO, SOME OF THEM REALLY MEAN 8388 04:41:02,280 --> 04:41:02,520 IT. 8389 04:41:02,520 --> 04:41:05,280 SOME OF THEM ARE LIKE, THEY'LL 8390 04:41:05,280 --> 04:41:06,720 SAY NO MULTIPLE TIMES, THEY'LL 8391 04:41:06,720 --> 04:41:07,480 COMPLETELY UNDERSTAND WHAT 8392 04:41:07,480 --> 04:41:08,320 THEY'RE SAYING NO TO. 8393 04:41:08,320 --> 04:41:10,840 BUT THE OTHER HALF OF THEM 8394 04:41:10,840 --> 04:41:11,880 CHANGE THEIR MIND REALLY EASILY. 8395 04:41:11,880 --> 04:41:12,960 YOU JUST GIVE THEM A LITTLE BIT 8396 04:41:12,960 --> 04:41:14,240 MORE INFORMATION, THEY 8397 04:41:14,240 --> 04:41:15,640 ACTUALLY -- WHEN YOU ASK THEM 8398 04:41:15,640 --> 04:41:16,600 WHAT THEY THOUGHT THEIR ORIGINAL 8399 04:41:16,600 --> 04:41:18,440 ANSWER WAS, THEY GET IT WRONG 8400 04:41:18,440 --> 04:41:19,560 75% OF THE TIME, SO SOME PEOPLE 8401 04:41:19,560 --> 04:41:21,320 ARE MAKING A MISTAKE WHEN YOU 8402 04:41:21,320 --> 04:41:23,720 ASK THE QUESTION ABOUT THE RIGHT 8403 04:41:23,720 --> 04:41:28,000 NOT TO KNOW. 8404 04:41:28,000 --> 04:41:30,760 AND SO THE REAL ISSUE IS A 8405 04:41:30,760 --> 04:41:32,160 NORMATIVE ONE, SHOULD WE ASK THE 8406 04:41:32,160 --> 04:41:36,200 QUESTION IF YOU DO, YOU ARE 8407 04:41:36,200 --> 04:41:37,400 EITHER -- YOU'RE GOING TO MAKE A 8408 04:41:37,400 --> 04:41:39,080 MISTAKE IN ONE DIRECTION OR THE 8409 04:41:39,080 --> 04:41:39,280 OTHER. 8410 04:41:39,280 --> 04:41:40,080 YOU'RE EITHER GOING TO ASK THE 8411 04:41:40,080 --> 04:41:41,520 QUESTION AND GET SOME GROUP OF 8412 04:41:41,520 --> 04:41:44,880 PEOPLE WHO SAY NO ACCIDENTALLY 8413 04:41:44,880 --> 04:41:46,160 AND THEN THEY'RE NOT GOING TO BE 8414 04:41:46,160 --> 04:41:47,040 ABLE TO GET THE INFORMATION THAT 8415 04:41:47,040 --> 04:41:48,440 THEY MIGHT OTHERWISE WOULD HAVE 8416 04:41:48,440 --> 04:41:50,320 WANTED, ARE OH YOU'RE GOING TO 8417 04:41:50,320 --> 04:41:52,080 BE PERHAPS IMPOSING INFORMATION 8418 04:41:52,080 --> 04:41:54,920 ON SOME GROUP OF PEOPLE WHO 8419 04:41:54,920 --> 04:41:56,000 WOULD HAVE PREFERRED NOT TO KNOW 8420 04:41:56,000 --> 04:41:56,360 IT. 8421 04:41:56,360 --> 04:41:57,760 SO IT'S A NORMATIVE QUESTION, 8422 04:41:57,760 --> 04:41:58,680 THERE'S NO RIGHT AND WRONG HERE, 8423 04:41:58,680 --> 04:41:59,880 BUT YOU HAVE TO UNDERSTAND WHAT 8424 04:41:59,880 --> 04:42:04,520 THE TENSION IS WHEN THINKING 8425 04:42:04,520 --> 04:42:05,200 ABOUT HOW TO CONSTRUCT THE 8426 04:42:05,200 --> 04:42:06,680 CONSENT FORM FOR PROGRAMS LIKE 8427 04:42:06,680 --> 04:42:12,320 THE ECHO CONSORTIUM AND DECIDE 8428 04:42:12,320 --> 04:42:13,960 WHETHER OR NOT THEY SHOULD 8429 04:42:13,960 --> 04:42:15,160 ACTIVELY ASK FOR CONSENT TO 8430 04:42:15,160 --> 04:42:16,040 RECEIVE PARTICULAR KINDS OF 8431 04:42:16,040 --> 04:42:20,760 FINDINGS. 8432 04:42:20,760 --> 04:42:22,440 SO JUST SOME OTHER POLICY 8433 04:42:22,440 --> 04:42:22,680 ISSUES. 8434 04:42:22,680 --> 04:42:23,640 WE'VE ALREADY TALKED A LITTLE 8435 04:42:23,640 --> 04:42:24,800 ABOUT RE-ANALYSIS, WHAT HAPPENS 8436 04:42:24,800 --> 04:42:26,520 IF THE SCIENCE CHANGES, DO YOU 8437 04:42:26,520 --> 04:42:28,000 HAVE TO GO BACK AND RE-ANALYZE, 8438 04:42:28,000 --> 04:42:32,440 OOR RE-CONTACT PEOPLE. 8439 04:42:32,440 --> 04:42:33,320 SOMETIMES WE HAVE SAMPLES THAT 8440 04:42:33,320 --> 04:42:34,960 ARE COLLECTED A LONG TIME AGO, I 8441 04:42:34,960 --> 04:42:36,320 DON'T THINK THIS IS AS RELEVANT 8442 04:42:36,320 --> 04:42:39,000 TO THE ECHO, AND ADAM TALKED 8443 04:42:39,000 --> 04:42:40,560 ABOUT CLIA, WHICH I WON'T GET 8444 04:42:40,560 --> 04:42:42,320 INTO BECAUSE I TRY TO -- I'M A 8445 04:42:42,320 --> 04:42:43,760 LAWYER BY TRAINING BUT I TRY TO 8446 04:42:43,760 --> 04:42:45,520 AVOID GETTING INTO CLIA AND 8447 04:42:45,520 --> 04:42:47,120 HIPAA AND ALL THE OTHER ACRONYMS 8448 04:42:47,120 --> 04:42:49,040 THAT HE TALKED ABOUT EARLIER. 8449 04:42:49,040 --> 04:42:50,800 SO WITH THAT, THANK YOU. 8450 04:42:50,800 --> 04:42:52,480 I'M REALLY LOOKING FORWARD TO 8451 04:42:52,480 --> 04:42:56,600 THE QUESTIONS AND THE DISCUSSION 8452 04:42:56,600 --> 04:43:00,160 LATER. 8453 04:43:00,160 --> 04:43:00,800 >>GREAT. 8454 04:43:00,800 --> 04:43:01,840 THANK YOU, BENJAMIN. 8455 04:43:01,840 --> 04:43:04,280 DO WE HAVE QUESTIONS? 8456 04:43:04,280 --> 04:43:05,320 JADINE? 8457 04:43:05,320 --> 04:43:08,800 >>DO YOU THINK THAT BASED OFF 8458 04:43:08,800 --> 04:43:10,760 ONE -- LIKE A ONE-TIME 8459 04:43:10,760 --> 04:43:13,160 CONTRIBUTION OR MULTIPLE 8460 04:43:13,160 --> 04:43:18,680 CONTRIBUS TO ASTUDY, DO YOU THIR 8461 04:43:18,680 --> 04:43:20,840 DECISION TO RELEASE THAT 8462 04:43:20,840 --> 04:43:22,240 INFORMATION, LIKE, BECAUSE YOU 8463 04:43:22,240 --> 04:43:23,560 SAID THE ONE TIME YOU PROBABLY 8464 04:43:23,560 --> 04:43:25,280 DON'T FEEL THE NEED TO DISCLOSE 8465 04:43:25,280 --> 04:43:25,800 THE INFORMATION. 8466 04:43:25,800 --> 04:43:27,960 DO YOU THINK THAT AFFECTS THE 8467 04:43:27,960 --> 04:43:29,920 INTEGRITY OF YOUR RESEARCH? 8468 04:43:29,920 --> 04:43:35,480 >>SO ANY TIME YOU'RE MAKING A 8469 04:43:35,480 --> 04:43:36,880 DECISION ABOUT THINGS THAT WILL 8470 04:43:36,880 --> 04:43:38,320 IMPACT WHETHER PEOPLE WILL WANT 8471 04:43:38,320 --> 04:43:39,120 TO SIGN UP, WHETHER YOU CAN 8472 04:43:39,120 --> 04:43:40,240 RETAIN THEM, I MEAN, YOU ALWAYS 8473 04:43:40,240 --> 04:43:42,240 HAVE TO THINK ABOUT THE 8474 04:43:42,240 --> 04:43:46,520 INTEGRITY OF THE RESEARCH. 8475 04:43:46,520 --> 04:43:47,640 WHAT I LIKE TO THINK ABOUT IN 8476 04:43:47,640 --> 04:43:49,160 TERMS OF ETHICAL OBLIGATIONS AND 8477 04:43:49,160 --> 04:43:51,800 THEN SORT OF WHAT'S PERMITTED. 8478 04:43:51,800 --> 04:43:53,480 I THINK RESEARCH SHOULD BE 8479 04:43:53,480 --> 04:43:55,640 RETURNING AS MUCH INFORMATION TO 8480 04:43:55,640 --> 04:43:58,760 PEOPLE AS THEY FE FEASIBLY CAN, 8481 04:43:58,760 --> 04:43:59,400 THAT PEOPLE WANT, THAT WILL 8482 04:43:59,400 --> 04:44:00,080 BENEFIT PEOPLE. 8483 04:44:00,080 --> 04:44:01,360 BUT NOT ALL RESEARCHERS THINK 8484 04:44:01,360 --> 04:44:03,000 THAT AND SO IT'S ALSO USEFUL TO 8485 04:44:03,000 --> 04:44:04,720 THINK ABOUT LIKE WHAT'S THE 8486 04:44:04,720 --> 04:44:05,680 FLOOR, WHAT'S THE MINIMUM THAT 8487 04:44:05,680 --> 04:44:07,560 THEY HAVE TO DO, AND SO THE 8488 04:44:07,560 --> 04:44:11,640 ARGUMENT THERE WAS FOR ONE-TIME 8489 04:44:11,640 --> 04:44:12,760 BLOOD DRAW KINDS OF STUDIES, THE 8490 04:44:12,760 --> 04:44:14,600 FLOOR IS GOING TO BE PRETTY LOW. 8491 04:44:14,600 --> 04:44:15,640 MAYBE THEY DON'T HAVE TO RETURN 8492 04:44:15,640 --> 04:44:17,280 INFORMATION. 8493 04:44:17,280 --> 04:44:19,360 THEY SHOULD, BUT YOU'RE RIGHT, 8494 04:44:19,360 --> 04:44:20,480 THEY SHOULD DEFINITELY THINK 8495 04:44:20,480 --> 04:44:21,840 CAREFULLY ABOUT HOW IT WILL 8496 04:44:21,840 --> 04:44:22,840 IMPACT THE RELATIONSHIP THEY'RE 8497 04:44:22,840 --> 04:44:24,320 BUILDING WITH THE COMMUNITY THAT 8498 04:44:24,320 --> 04:44:27,400 THEY'RE RECRUITING FROM, BECAUSE 8499 04:44:27,400 --> 04:44:29,080 THAT COULD IMPACT THE INTEGRITY 8500 04:44:29,080 --> 04:44:35,760 OF THEIR STUDY. 8501 04:44:35,760 --> 04:44:37,160 ANY OTHER QUESTIONS? 8502 04:44:37,160 --> 04:44:41,480 >>I'M JUST CURIOUS ABOUT IN THE 8503 04:44:41,480 --> 04:44:42,080 REFUSERS THAT YOU RUN ACROSS, 8504 04:44:42,080 --> 04:44:45,080 HAVE YOU DONE FOLLOW-UP? 8505 04:44:45,080 --> 04:44:45,840 >>WE'RE IN THE PROCESS OF 8506 04:44:45,840 --> 04:44:47,040 PLANNING THAT STUDY. 8507 04:44:47,040 --> 04:44:47,880 SO THAT'S RIGHT, SO YOU CAN ONLY 8508 04:44:47,880 --> 04:44:51,600 LEARN SO MUCH WITH A SURVEY. 8509 04:44:51,600 --> 04:44:54,080 WE'RE GOING TO DO AN IN-DEPTH 8510 04:44:54,080 --> 04:44:54,840 QUALITATIVE STUDY WITH THOSE 8511 04:44:54,840 --> 04:44:57,760 PARTICIPANTS TO LEARN MORE ABOUT 8512 04:44:57,760 --> 04:44:59,520 WHY THEY CHANGED THEIR MIND, WHY 8513 04:44:59,520 --> 04:45:00,960 THEY DIDN'T CHANGE THEIR MIND, 8514 04:45:00,960 --> 04:45:01,880 WHAT SORT OF REASONING THEY WERE 8515 04:45:01,880 --> 04:45:03,080 ENGAGING IN, BECAUSE, YEAH, YOU 8516 04:45:03,080 --> 04:45:06,160 CAN ONLY TELL SO MUCH THE STORY 8517 04:45:06,160 --> 04:45:09,640 WITH JUST THE NUMBERS. 8518 04:45:09,640 --> 04:45:11,280 >>HOW MUCH INFORMATION DO YOU 8519 04:45:11,280 --> 04:45:14,240 GIVE THEM AT THE TIME OF CONSENT 8520 04:45:14,240 --> 04:45:15,360 ABOUT THE RESULTS THAT THEY MAY 8521 04:45:15,360 --> 04:45:16,640 OR MAY NOT BE GETTING? 8522 04:45:16,640 --> 04:45:18,200 >>SO THAT'S A GREAT QUESTION, 8523 04:45:18,200 --> 04:45:19,560 AND THAT'S, I THINK, AN 8524 04:45:19,560 --> 04:45:20,200 IMPORTANT ONE FOR US TO THINK 8525 04:45:20,200 --> 04:45:24,360 THROUGH. 8526 04:45:24,360 --> 04:45:26,080 ON THE ONE HAND, I'VE SEEN 8527 04:45:26,080 --> 04:45:28,160 CONSENT FORMS WITH MULTIPLE 8528 04:45:28,160 --> 04:45:31,320 PAGES ABOUT JUST GENETIC RESULTS 8529 04:45:31,320 --> 04:45:32,840 OR JUST SPECIFIC KINDS OF 8530 04:45:32,840 --> 04:45:33,520 RESULTS. 8531 04:45:33,520 --> 04:45:35,040 CONSENT FORM ARE WAY TOO LONG AS 8532 04:45:35,040 --> 04:45:37,240 IT IS SO YOU REALLY DON'T WANT 8533 04:45:37,240 --> 04:45:38,680 TO OVERBURDEN PEOPLE, AND I 8534 04:45:38,680 --> 04:45:42,120 QUESTION THE ABILITY OF PEOPLE 8535 04:45:42,120 --> 04:45:43,400 WHO ARE SOMETIMES IN STRESSFUL 8536 04:45:43,400 --> 04:45:44,600 SITUATIONS, MAKING LOTS OF CHECK 8537 04:45:44,600 --> 04:45:46,000 BOX CHOICES THROUGH -- LIKE 8538 04:45:46,000 --> 04:45:47,160 THAT'S REALLY HARD. 8539 04:45:47,160 --> 04:45:51,240 THAT'S COGNITIVELY DIFFICULT. 8540 04:45:51,240 --> 04:45:51,840 BUT ON THE OTHER HAND, YOU DON'T 8541 04:45:51,840 --> 04:45:53,040 WANT TO JUST GIVE THEM ONE 8542 04:45:53,040 --> 04:45:54,240 SENTENCE THAT SAYS, WOULD YOU 8543 04:45:54,240 --> 04:45:57,080 LIKE MORE INFORMATION ABOUT 8544 04:45:57,080 --> 04:45:57,360 YOURSELF? 8545 04:45:57,360 --> 04:45:58,240 LIKE, THAT'S NOT ENOUGH. 8546 04:45:58,240 --> 04:46:00,120 AND SO IT IS A CHALLENGE TO FIND 8547 04:46:00,120 --> 04:46:01,440 A SWEET SPOT. 8548 04:46:01,440 --> 04:46:02,960 THE WAY I LIKE TO THINK ABOUT IT 8549 04:46:02,960 --> 04:46:04,760 IS SORT OF IN A PHASED OR 8550 04:46:04,760 --> 04:46:06,720 MODULAR WAY, LIKE, YOU GIVE THEM 8551 04:46:06,720 --> 04:46:08,480 ONE SHORT PARAGRAPH IN THE 8552 04:46:08,480 --> 04:46:11,920 CONSENT FORM, AND THEN YOU POINT 8553 04:46:11,920 --> 04:46:13,120 THEM TO MORE INFORMATION. 8554 04:46:13,120 --> 04:46:14,560 SO PEOPLE THAT WANT MORE 8555 04:46:14,560 --> 04:46:16,440 INFORMATION MAYBE WANT TO MAKE 8556 04:46:16,440 --> 04:46:17,400 MORE GRANULAR DECISIONS, THERE'S 8557 04:46:17,400 --> 04:46:18,960 A WAY SORT OF SEPARATE FROM THE 8558 04:46:18,960 --> 04:46:21,400 CONSENT FORM FOR THEM TO DO 8559 04:46:21,400 --> 04:46:22,520 THAT, BUT THE CONSENT FORM JUST 8560 04:46:22,520 --> 04:46:23,960 CONTAINS THE ONE PARAGRAPH THAT 8561 04:46:23,960 --> 04:46:26,240 PEOPLE NEED TO KNOW WITHOUT 8562 04:46:26,240 --> 04:46:28,440 GOING INTO A TON OF DETAIL. 8563 04:46:28,440 --> 04:46:29,800 BUT REASONABLE PEOPLE MIGHT 8564 04:46:29,800 --> 04:46:30,760 DISAGREE, SO I WOULD LOVE TO 8565 04:46:30,760 --> 04:46:32,520 HEAR OTHER PEOPLE'S VIEWS WHEN 8566 04:46:32,520 --> 04:46:34,640 WE GET INTO THE DISCUSSION. 8567 04:46:34,640 --> 04:46:39,680 INGRID. 8568 04:46:39,680 --> 04:46:43,480 >>WHEN YOU -- AS A RESEARCHER 8569 04:46:43,480 --> 04:46:44,800 WHO HAS INFORMATION ABOUT 8570 04:46:44,800 --> 04:46:45,400 SOMEBODY THAT THEY FEEL IS 8571 04:46:45,400 --> 04:46:46,360 IMPORTANT TO THEIR HEALTH AND 8572 04:46:46,360 --> 04:46:47,560 THEN NOT BEING ABLE TO GIVE IT 8573 04:46:47,560 --> 04:46:48,760 BACK TO THEM? 8574 04:46:48,760 --> 04:46:51,440 >>SO SOMETIMES I CALL THAT THE 8575 04:46:51,440 --> 04:46:52,680 "I CAN'T SLEEP AT NIGHT" 8576 04:46:52,680 --> 04:46:53,400 PROBLEM. 8577 04:46:53,400 --> 04:46:54,280 I'VE DEFINITELY HAD CONSULTS 8578 04:46:54,280 --> 04:46:56,640 WITH INVESTIGATORS WHO HAVE 8579 04:46:56,640 --> 04:46:56,920 INFORMATION. 8580 04:46:56,920 --> 04:46:57,960 THAT'S THE PROBLEM WITH A BARE 8581 04:46:57,960 --> 04:47:01,040 BONES CHECK BOX, BECAUSE SOMEONE 8582 04:47:01,040 --> 04:47:03,320 CHECKS NO AND YOU CAN'T -- YOU 8583 04:47:03,320 --> 04:47:05,240 CAN'T CALL THEM UP AND SAY, HEY, 8584 04:47:05,240 --> 04:47:07,000 WE FOUND OUT SOMETHING ABOUT UM, 8585 04:47:07,000 --> 04:47:08,080 WOULD YOU -- YOU SAID YOU DIDN'T 8586 04:47:08,080 --> 04:47:09,880 WANT TO KNOW, IS THAT TRUE? 8587 04:47:09,880 --> 04:47:10,920 AND THEY'LL SAY, WELL, WHAT KIND 8588 04:47:10,920 --> 04:47:11,760 OF THING IS IT? 8589 04:47:11,760 --> 04:47:13,400 YOU JUST CAN'T HAVE THAT 8590 04:47:13,400 --> 04:47:14,720 CONVERSATION WITHOUT REVEALING 8591 04:47:14,720 --> 04:47:15,840 MOST OF WHAT THEY DIDN'T WANT TO 8592 04:47:15,840 --> 04:47:17,160 KNOW IF THEY REALLY DIDN'T WANT 8593 04:47:17,160 --> 04:47:22,240 TO KNOW FLEURCHLT AND SO IT IS 8594 04:47:22,240 --> 04:47:23,440 HARD, IT CAN LEAD TO MORAL 8595 04:47:23,440 --> 04:47:23,880 DISTRESS. 8596 04:47:23,880 --> 04:47:25,320 I'VE ARGUED BEFORE THAT IT'S NOT 8597 04:47:25,320 --> 04:47:27,760 A MAJOR REASON TO BE SKEPTICAL 8598 04:47:27,760 --> 04:47:28,360 OF THEIR RIGHT NOT TO KNOW BUT 8599 04:47:28,360 --> 04:47:30,400 IT IS A REASON. 8600 04:47:30,400 --> 04:47:32,560 IT'S WHY I'M IN FAVOR OF MORE 8601 04:47:32,560 --> 04:47:34,920 LIKE DEFAULT, TELLING PEOPLE, 8602 04:47:34,920 --> 04:47:35,920 HERE'S THE KIND OF INFORMATION 8603 04:47:35,920 --> 04:47:37,240 WE'RE GOING TO RETURN TO YOU. 8604 04:47:37,240 --> 04:47:38,880 TALK TO US IF YOU DON'T WANT 8605 04:47:38,880 --> 04:47:41,440 THAT, AND LETTING PEOPLE SORT OF 8606 04:47:41,440 --> 04:47:43,640 OPT OUT, SOFT-OPT OUT SO THAT 8607 04:47:43,640 --> 04:47:44,800 YOU MINIMIZE THE CHANCE OF 8608 04:47:44,800 --> 04:47:47,920 SOMEONE CHECKING THE WRONG BOX, 8609 04:47:47,920 --> 04:47:48,560 AND MISSING OUT ON INFORMATION 8610 04:47:48,560 --> 04:47:50,560 THAT THEY REALLY WANTED AND 8611 04:47:50,560 --> 04:47:55,040 COULD HAVE USED, AND THEN HAVING 8612 04:47:55,040 --> 04:47:56,640 THE EYE CAN'T SLEEP AT NIGHT 8613 04:47:56,640 --> 04:47:57,320 PROBLEM BECAUSE THE INVESTIGATOR 8614 04:47:57,320 --> 04:47:58,160 HAS INFORMATION THEY THINK IS 8615 04:47:58,160 --> 04:48:01,840 IMPORTANT BUT HAS THIS CHECK BOX 8616 04:48:01,840 --> 04:48:07,960 THAT SAYS THEY SHOULDN'T GIVE IT 8617 04:48:07,960 --> 04:48:08,160 BACK. 8618 04:48:08,160 --> 04:48:09,080 >>THANK YOU, BENJAMIN. 8619 04:48:09,080 --> 04:48:13,480 >>THANKS. 8620 04:48:13,480 --> 04:48:24,000 >>NEXT WE'LL HEAR FROM ADRIANA. 8621 04:48:34,160 --> 04:48:35,480 >>GOOD AFTERNOON, EVERYONE. 8622 04:48:35,480 --> 04:48:37,120 MY NAME IS ADRIANA ARCIA, AND I 8623 04:48:37,120 --> 04:48:38,720 AM A PROFESSOR OF NURSING AT THE 8624 04:48:38,720 --> 04:48:39,920 UNIVERSITY OF SAN DIEGO. 8625 04:48:39,920 --> 04:48:41,320 RECENTLY MOVED OVER FROM 8626 04:48:41,320 --> 04:48:43,080 COLUMBIA UNIVERSITY. 8627 04:48:43,080 --> 04:48:44,440 SO IN THIS SESSION ABOUT 8628 04:48:44,440 --> 04:48:45,120 DETERMINING WHICH RESULTS TO 8629 04:48:45,120 --> 04:48:46,080 RETURN TO PARTICIPANTS, I'M 8630 04:48:46,080 --> 04:48:48,720 GOING TO FOCUS ON SELF-REPORTED 8631 04:48:48,720 --> 04:48:48,960 RESULTS. 8632 04:48:48,960 --> 04:48:50,000 AND THIS IS A LITTLE BIT 8633 04:48:50,000 --> 04:48:50,680 DIFFERENT BECAUSE WHEN PEOPLE 8634 04:48:50,680 --> 04:48:52,400 ARE GIVING YOU SELF-REPORTED 8635 04:48:52,400 --> 04:48:54,200 RESULTS, THEY KNOW WHAT THEY 8636 04:48:54,200 --> 04:48:54,560 TOLD YOU, RIGHT? 8637 04:48:54,560 --> 04:48:55,960 SO IT'S NOT LIKE THE MYSTERIES 8638 04:48:55,960 --> 04:48:57,960 OF THE GENOME. 8639 04:48:57,960 --> 04:49:00,000 THE BULK OF MY EXPERTISE IS IN 8640 04:49:00,000 --> 04:49:00,640 ACTUALLY HOW TO RETURN RESULTS 8641 04:49:00,640 --> 04:49:01,960 BUT IN THIS TALK, I'M GOING TO 8642 04:49:01,960 --> 04:49:03,600 APPLY WHAT I'VE LEARNED ABOUT 8643 04:49:03,600 --> 04:49:04,800 THAT TO INFORM WHICH RESULTS 8644 04:49:04,800 --> 04:49:06,920 WE'RE GOING TO CHOOSE TO RETURN. 8645 04:49:06,920 --> 04:49:08,440 AND AS A BIT OF BACKGROUND, MY 8646 04:49:08,440 --> 04:49:09,840 RESEARCH HAS BEEN FOCUSED ON 8647 04:49:09,840 --> 04:49:11,720 USING PARTICIPATORY DESIGN 8648 04:49:11,720 --> 04:49:13,800 METHODS TO DEVELOP TAILORED INFO 8649 04:49:13,800 --> 04:49:15,840 GRAPHICS TO HELP PEOPLE 8650 04:49:15,840 --> 04:49:16,600 COMPREHEND THEIR PERSONAL HEALTH 8651 04:49:16,600 --> 04:49:17,560 INFORMATION, ESPECIALLY IF THEY 8652 04:49:17,560 --> 04:49:19,760 HAVE LOW HEALTH LITERACY OR 8653 04:49:19,760 --> 04:49:21,280 LIMITED ENGLISH PROFICIENCY. 8654 04:49:21,280 --> 04:49:23,160 SO EVERYTHING WE DO IS ALWAYS IN 8655 04:49:23,160 --> 04:49:25,120 ENGLISH AND SPANISH BASED ON THE 8656 04:49:25,120 --> 04:49:26,120 COMMUNITIES I WORK IN. 8657 04:49:26,120 --> 04:49:27,280 NOW WE'RE GOING TO BE WORKING IN 8658 04:49:27,280 --> 04:49:31,840 CHINESE AND BANGLA SO THAT'S 8659 04:49:31,840 --> 04:49:32,880 GOING TO BE A NEW CHALLENGE 8660 04:49:32,880 --> 04:49:34,560 SINCE I DON'T SPEAK THOSE LANGE 8661 04:49:34,560 --> 04:49:38,160 WANLS BUT FOR EXAMPLE, WE TELL 8662 04:49:38,160 --> 04:49:38,720 SOMEBODY HERE IS YOUR BLOOD 8663 04:49:38,720 --> 04:49:39,480 PRESSURE, WHAT IS THAT NUMBER 8664 04:49:39,480 --> 04:49:41,120 AND WHY SHOULD YOU CARE? 8665 04:49:41,120 --> 04:49:42,840 SO ALTHOUGH SOME OF OUR WORK IS 8666 04:49:42,840 --> 04:49:46,440 INTENDED FOR CLINICAL USE OUR 8667 04:49:46,440 --> 04:49:47,640 ORIGINAL USE WAS TO RETURN 8668 04:49:47,640 --> 04:49:48,960 RESULTS TO PARTICIPANTS SO I'LL 8669 04:49:48,960 --> 04:49:50,360 BE ILLUSTRATING WITH A FUEL OF 8670 04:49:50,360 --> 04:49:51,320 THOSE EXAMPLES. 8671 04:49:51,320 --> 04:49:52,440 WE DEFINITELY -- WHEN WE STARTED 8672 04:49:52,440 --> 04:49:54,400 TO DO THIS, WE REALIZED, THERE 8673 04:49:54,400 --> 04:49:55,080 IS NOT LITERATURE OUT THERE TO 8674 04:49:55,080 --> 04:49:56,640 TELL US HOW TO SHOW SOMEONE 8675 04:49:56,640 --> 04:49:57,640 THEIR BLOOD PRESSURE, AND THAT'S 8676 04:49:57,640 --> 04:49:59,320 REALLY HOW WE GOT STARTED ON 8677 04:49:59,320 --> 04:50:09,680 THIS RESEARCH JOURNEY. 8678 04:50:14,960 --> 04:50:16,400 SO THE FIRST THING IS, I'M GOING 8679 04:50:16,400 --> 04:50:21,040 TO MAKE THREE KEY POINTS. 8680 04:50:21,040 --> 04:50:28,080 NOW IT'S NOT WORKING. 8681 04:50:28,080 --> 04:50:29,360 THE FIRST ONE IS KIND OF 8682 04:50:29,360 --> 04:50:30,920 OBVIOUS, BUT YOU WANT TO MAKE 8683 04:50:30,920 --> 04:50:32,600 SURE THAT YOU HAVE A CLEAR AND 8684 04:50:32,600 --> 04:50:33,720 ONGOING RELEVANCE TO HEALTH. 8685 04:50:33,720 --> 04:50:35,440 SO YOU MIGHT HAVE INSTANCES IN 8686 04:50:35,440 --> 04:50:38,440 WHICH IT'S NOT OBVIOUS TO THE 8687 04:50:38,440 --> 04:50:39,440 PARTICIPANT WHAT THE RELEVANCE 8688 04:50:39,440 --> 04:50:39,960 IS TO HEALTH. 8689 04:50:39,960 --> 04:50:41,280 FOR INSTANCE, THEIR PROXIMITY TO 8690 04:50:41,280 --> 04:50:43,640 A TRUCKING ROUTE AND THEIR 8691 04:50:43,640 --> 04:50:45,640 ASTHMA, THEY'RE GOING TO SAY WHY 8692 04:50:45,640 --> 04:50:46,720 ARE THOSE THINGS RELATED? 8693 04:50:46,720 --> 04:50:47,720 THEREFORE YOU WANT TO SELECT 8694 04:50:47,720 --> 04:50:49,360 VARIABLES FOR WHICH YOU CAN GIVE 8695 04:50:49,360 --> 04:50:50,640 CLEAR EXPLANATIONS FOR THEIR 8696 04:50:50,640 --> 04:50:51,400 RELATIONSHIP TO HEALTH. 8697 04:50:51,400 --> 04:50:53,960 NOW THERE'S GOING TO BE SOME 8698 04:50:53,960 --> 04:50:54,520 SELF-REPORTED DATA WHERE THE 8699 04:50:54,520 --> 04:50:55,400 RELEVANCE TO HEALTH MIGHT BE 8700 04:50:55,400 --> 04:50:57,360 CLEAR, BUT IT'S NOT ONGOING. 8701 04:50:57,360 --> 04:51:00,040 SO UNSTABLE CHARACTERISTICS LIKE 8702 04:51:00,040 --> 04:51:01,000 YOUR CURRENT MOOD OR HOW HUNGRY 8703 04:51:01,000 --> 04:51:02,200 YOU ARE RIGHT THIS MINUTE, THOSE 8704 04:51:02,200 --> 04:51:04,640 THINGS ARE VERY HIGHLY VARIABLE, 8705 04:51:04,640 --> 04:51:06,360 AND THEY HAVE -- OR LIKE THE 8706 04:51:06,360 --> 04:51:07,400 TIMING OF YOUR LAST CIGARETTE OR 8707 04:51:07,400 --> 04:51:09,280 THE CUP OF COFFEE, THEY HAVE A 8708 04:51:09,280 --> 04:51:11,120 VERY SHORT SHELF LIFE. 8709 04:51:11,120 --> 04:51:11,640 SO UNLESS YOU CAN RETURN 8710 04:51:11,640 --> 04:51:12,880 SOMETHING ALMOST IMMEDIATELY, 8711 04:51:12,880 --> 04:51:14,000 IT'S LIKELY GOING TO BE 8712 04:51:14,000 --> 04:51:17,560 UNSUITABLE. 8713 04:51:17,560 --> 04:51:18,200 THE SECOND KEY POINT IS THAT WE 8714 04:51:18,200 --> 04:51:19,400 WANT TO BE ABLE TO CONTEXTUALIZE 8715 04:51:19,400 --> 04:51:21,040 THE RESULTS WE GIVE PARTICIPANTS 8716 04:51:21,040 --> 04:51:22,840 BECAUSE THEY'RE SELF-REPORTED SO 8717 04:51:22,840 --> 04:51:23,520 THEY ALREADY KNOW WHAT THEY TOLD 8718 04:51:23,520 --> 04:51:25,280 US, SO WE'RE ONLY REALLY ADDING 8719 04:51:25,280 --> 04:51:28,760 VALUE IF WE'RE CONTEXTUALIZING. 8720 04:51:28,760 --> 04:51:30,640 SO ON THE RIGHT IS AN EXAMPLE OF 8721 04:51:30,640 --> 04:51:32,920 AN INFOGRAPHIC FOR A CDC 30-DAY 8722 04:51:32,920 --> 04:51:34,360 MEASURE, WHICH IS -- THE 8723 04:51:34,360 --> 04:51:35,480 QUESTION IS OVER THE LAST 30 8724 04:51:35,480 --> 04:51:37,080 DAYS, HOW MANY DAYS WERE YOU 8725 04:51:37,080 --> 04:51:38,040 WORRIED, TENSE OR ANXIOUS? 8726 04:51:38,040 --> 04:51:40,600 AND WE'RE SHOWING THE INDIVIDUAL 8727 04:51:40,600 --> 04:51:41,400 PARTICIPANT THEIR RESULT ON THE 8728 04:51:41,400 --> 04:51:43,560 LEFT COMPARED TO THE COHORT MEAN 8729 04:51:43,560 --> 04:51:44,840 ON THE RIGHT. 8730 04:51:44,840 --> 04:51:46,040 AND THE COMPARISON DOES PROVIDE 8731 04:51:46,040 --> 04:51:46,960 SOME CONTEXT. 8732 04:51:46,960 --> 04:51:48,120 IT'S OBVIOUS THAT SEVEN DAYS IS 8733 04:51:48,120 --> 04:51:49,200 WORSE THAN FIVE. 8734 04:51:49,200 --> 04:51:51,680 BUT IS THERE A MEANINGFUL 8735 04:51:51,680 --> 04:51:53,240 DIFFERENCE BETWEEN -- OH, SORRY. 8736 04:51:53,240 --> 04:51:54,800 IS THERE A MEANINGFUL DIFFERENCE 8737 04:51:54,800 --> 04:51:56,840 BETWEEN THOSE TWO? 8738 04:51:56,840 --> 04:51:58,000 IS FIVE OKAY? 8739 04:51:58,000 --> 04:51:59,240 HOW MANY DAYS IS TOO MANY? 8740 04:51:59,240 --> 04:52:00,560 WITHOUT THAT CONTEXTUAL 8741 04:52:00,560 --> 04:52:01,520 INFORMATION, IT'S REALLY HARD TO 8742 04:52:01,520 --> 04:52:03,240 KNOW HOW TO FEEL ABOUT THIS. 8743 04:52:03,240 --> 04:52:04,680 SO THEREFORE, WHENEVER POSSIBLE, 8744 04:52:04,680 --> 04:52:06,200 WE WANT TO CHOOSE RESULTS FOR 8745 04:52:06,200 --> 04:52:07,720 WHICH THAT KIND OF CONTEXTUAL 8746 04:52:07,720 --> 04:52:09,640 INFORMATION IS AVAILABLE. 8747 04:52:09,640 --> 04:52:11,400 LIKE VALUE JUDGMENTS, IS THIS 8748 04:52:11,400 --> 04:52:14,080 VALUE GOOD OR BAD? 8749 04:52:14,080 --> 04:52:14,680 RECOMMENDATIONS, REFERENCE 8750 04:52:14,680 --> 04:52:16,320 RANGES, YOU KNOW, IF IT'S LOW, 8751 04:52:16,320 --> 04:52:18,000 MEDIUM OR HIGH, THRESHOLDS, 8752 04:52:18,000 --> 04:52:19,880 COHORT MEANS, POPULATION MEANS, 8753 04:52:19,880 --> 04:52:21,800 ALL OF THOSE CAN BE VERY HELPFUL 8754 04:52:21,800 --> 04:52:22,440 IN THIS REGARD. 8755 04:52:22,440 --> 04:52:25,160 SO IF YOU'RE STILL DECIDING 8756 04:52:25,160 --> 04:52:26,120 WHICH SELF-REPORTED MEASURES 8757 04:52:26,120 --> 04:52:27,600 YOU'RE GOING TO COLLECT, ONE 8758 04:52:27,600 --> 04:52:29,640 THAT YOU CAN LOOK AT, THERE'S A 8759 04:52:29,640 --> 04:52:33,120 DATA BANK OF MEASURES CALLED THE 8760 04:52:33,120 --> 04:52:34,440 PROMIS MEASURES, THE 8761 04:52:34,440 --> 04:52:35,760 PATIENT-REPORTED OUTCOMES 8762 04:52:35,760 --> 04:52:36,640 MEASUREMENT INFORMATION SYSTEM, 8763 04:52:36,640 --> 04:52:38,560 AND THESE ALL USE A POPULATION 8764 04:52:38,560 --> 04:52:41,360 MEAN OF 50, THE T SCORE. 8765 04:52:41,360 --> 04:52:45,680 POPULATION MEAN OF 50 AND T 8766 04:52:45,680 --> 04:52:48,320 SCORE OF 10. 8767 04:52:48,320 --> 04:52:50,440 THE PHENX TOOLKIT DOESN'T HAVE 8768 04:52:50,440 --> 04:52:51,800 THE SAME KIND OF STANDARDIZATION 8769 04:52:51,800 --> 04:52:54,480 BUT THERE ARE STILL A LOT OF 8770 04:52:54,480 --> 04:52:56,000 HIGH QUALITY MEASURES IN THERE. 8771 04:52:56,000 --> 04:52:56,840 AND PEOPLE ARE LIKELY TO ASSUME 8772 04:52:56,840 --> 04:52:57,800 THAT THE INFORMATION YOU RETURN 8773 04:52:57,800 --> 04:52:59,640 TO THEM IS IMPORTANT AND 8774 04:52:59,640 --> 04:52:59,960 ACTIONABLE. 8775 04:52:59,960 --> 04:53:00,600 YOU'RE NOT GOING TO TELL THEM 8776 04:53:00,600 --> 04:53:01,600 SOMETHING THAT IS IRRELEVANT TO 8777 04:53:01,600 --> 04:53:04,160 THEM. 8778 04:53:04,160 --> 04:53:05,120 SO WHENEVER POSSIBLE, YOU CAN 8779 04:53:05,120 --> 04:53:06,480 SELECT RESULTS THAT CAN BE 8780 04:53:06,480 --> 04:53:07,400 PAIRED WITH HEALTH PROMOTING 8781 04:53:07,400 --> 04:53:07,840 NEXT STEPS. 8782 04:53:07,840 --> 04:53:09,360 WE HEARD THAT LOUD AND CLEAR 8783 04:53:09,360 --> 04:53:11,480 FROM OUR PANEL THIS AFTERNOON, 8784 04:53:11,480 --> 04:53:14,080 THAT WE WANT TO NOAF WHAT SHOULD 8785 04:53:14,080 --> 04:53:16,080 I DO ABOUT THIS NEXT. 8786 04:53:16,080 --> 04:53:18,040 SO IN THIS EXAMPLE WEE GIVING 8787 04:53:18,040 --> 04:53:19,880 PEOPLE THEIR RESULT FOR THEIR 8788 04:53:19,880 --> 04:53:22,400 MINUTES OF MODERATE PHYSICAL 8789 04:53:22,400 --> 04:53:24,760 ACTIVITY FOR THE WEEK ALONG WITH 8790 04:53:24,760 --> 04:53:27,400 THE COHORT AND THE CDC 8791 04:53:27,400 --> 04:53:27,920 RECOMMENDATION FOR THAT 8792 04:53:27,920 --> 04:53:28,360 PARTICULAR MEASURE. 8793 04:53:28,360 --> 04:53:29,440 WE'RE GOING TO TALK ABOUT FUTURE 8794 04:53:29,440 --> 04:53:30,880 RESEARCH AND NEXT STEPS, THREE 8795 04:53:30,880 --> 04:53:33,600 DIFFERENT POINTS ABOUT THAT. 8796 04:53:33,600 --> 04:53:35,000 THERE MAY BE INSTANCES WHEN THE 8797 04:53:35,000 --> 04:53:36,080 RESULTS PRESENTED TO THE 8798 04:53:36,080 --> 04:53:37,040 RESEARCH PARTICIPANT CONFLICT 8799 04:53:37,040 --> 04:53:38,760 WITH THEIR SELF-IMAGE. 8800 04:53:38,760 --> 04:53:39,960 FOR INSTANCE, IF WE SAY YOUR BMI 8801 04:53:39,960 --> 04:53:41,400 IS CLASSIFIED AS OVERWEIGHT 8802 04:53:41,400 --> 04:53:43,320 INSTEAD OF HEALTHY OR SOMEONE 8803 04:53:43,320 --> 04:53:45,080 FEELS THAT THEIR ASTHMA IS UNDER 8804 04:53:45,080 --> 04:53:46,080 CONTROL AND WE'RE TELLING THEM 8805 04:53:46,080 --> 04:53:47,080 THAT IT'S NOT. 8806 04:53:47,080 --> 04:53:48,880 IN MY RESEARCH, I STARTED TO 8807 04:53:48,880 --> 04:53:50,320 WONDER, WHAT HAPPENS IN THESE 8808 04:53:50,320 --> 04:53:52,720 SITUATIONS? 8809 04:53:52,720 --> 04:53:55,680 IF THERE'S SUFFICIENT COGNITIVE 8810 04:53:55,680 --> 04:53:57,480 DISSIDENCE, DOES IT AFFECT 8811 04:53:57,480 --> 04:53:58,800 COMPREHENSION? 8812 04:53:58,800 --> 04:53:59,920 LIKE THIS DOESN'T PAN OUT, THIS 8813 04:53:59,920 --> 04:54:00,880 DOESN'T TRACK, I DON'T 8814 04:54:00,880 --> 04:54:02,960 UNDERSTAND IT, OR THEY BLOCK IT 8815 04:54:02,960 --> 04:54:03,800 OUT, DOES THAT AFFECT THE 8816 04:54:03,800 --> 04:54:04,880 CREDIBILITY OF THE MESSAGE? 8817 04:54:04,880 --> 04:54:06,760 AND SUBSEQUENTLY THE 8818 04:54:06,760 --> 04:54:07,600 PARTICIPANT'S TRUST IN THE TEAM 8819 04:54:07,600 --> 04:54:09,200 OR THE RESEARCH? 8820 04:54:09,200 --> 04:54:11,320 WHAT EFFECT MIGHT IT HAVE OR NOT 8821 04:54:11,320 --> 04:54:13,720 HAVE ON PEOPLE'S SELF MANAGEMENT 8822 04:54:13,720 --> 04:54:14,160 ACTIONS? 8823 04:54:14,160 --> 04:54:15,880 THESE ARE ALL UNANSWERED 8824 04:54:15,880 --> 04:54:17,440 QUESTIONS THAT I'VE NOT HAD THE 8825 04:54:17,440 --> 04:54:18,640 OPPORTUNITY YET TO PURSUE, SO I 8826 04:54:18,640 --> 04:54:20,560 DON'T THINK WE HAVE A CLEAR 8827 04:54:20,560 --> 04:54:21,040 ANSWER YET. 8828 04:54:21,040 --> 04:54:23,120 IN LIGHT OF THAT, IF WE'RE 8829 04:54:23,120 --> 04:54:24,840 SPOILED FOR CHOICE, AND WE 8830 04:54:24,840 --> 04:54:27,880 REALLY HAVE LOTS OF RESULTS TO 8831 04:54:27,880 --> 04:54:29,600 RETURN TO CHOOSE FROM, THEN WE 8832 04:54:29,600 --> 04:54:32,920 MIGHT REALLY THINK ABOUT WHICH 8833 04:54:32,920 --> 04:54:35,440 ONES MIGHT BRING UP THIS ISSUE. 8834 04:54:35,440 --> 04:54:39,280 AND MAYBE WE STEER CLEAR OF 8835 04:54:39,280 --> 04:54:40,720 THOSE UNTIL WE HAVE A BETTER 8836 04:54:40,720 --> 04:54:41,920 IDEA OF WHAT EFFECT THAT COULD 8837 04:54:41,920 --> 04:54:43,800 ACTUALLY HAVE ON PEOPLE. 8838 04:54:43,800 --> 04:54:44,440 ANOTHER UNANSWERED QUESTION FOR 8839 04:54:44,440 --> 04:54:46,160 ME IS WHEN AND WHY DO PEOPLE 8840 04:54:46,160 --> 04:54:47,800 READ TITLES AND WHEN DON'T THEY? 8841 04:54:47,800 --> 04:54:49,920 SO THERE'S SOME RESEARCH TO 8842 04:54:49,920 --> 04:54:52,120 SUGGEST THAT VIEWERS OF 8843 04:54:52,120 --> 04:54:53,680 VISUALIZATION SUCH AS CHARTS OR 8844 04:54:53,680 --> 04:54:55,000 INFO GRAPHICS RELY VERY HEAVILY 8845 04:54:55,000 --> 04:54:56,040 ON TITLES. 8846 04:54:56,040 --> 04:54:57,680 HOWEVER, IN OUR RESEARCH, WE 8847 04:54:57,680 --> 04:54:59,960 REPEATEDLY OBSERVED PARTICIPANTS 8848 04:54:59,960 --> 04:55:01,720 SYSTEMATICALLY SKIPPING TITLES. 8849 04:55:01,720 --> 04:55:02,320 IT HAPPENED SO MUCH THAT WE 8850 04:55:02,320 --> 04:55:03,560 STARTED CALLING IT TITLE 8851 04:55:03,560 --> 04:55:03,880 NEGLECT. 8852 04:55:03,880 --> 04:55:05,560 NOW, I HAVE SOME HYPOTHESES 8853 04:55:05,560 --> 04:55:07,520 ABOUT WHY THAT MIGHT BE. 8854 04:55:07,520 --> 04:55:10,520 SO THIS ASTHMA INFOGRAPHIC IS 8855 04:55:10,520 --> 04:55:12,080 PROBABLY INTERPRETABLE WITHOUT 8856 04:55:12,080 --> 04:55:13,080 THE TITLE. 8857 04:55:13,080 --> 04:55:13,640 IF YOU COVERED UP THE TITLE 8858 04:55:13,640 --> 04:55:14,560 YOU'D STILL GET THE GIST OF THE 8859 04:55:14,560 --> 04:55:15,080 MESSAGE. 8860 04:55:15,080 --> 04:55:16,640 BUT IF YOU HAVE SOMETHING LIKE A 8861 04:55:16,640 --> 04:55:17,960 STANDARD LINE CHART OR BAR 8862 04:55:17,960 --> 04:55:19,200 CHART, YOU HAVE TO READ THE 8863 04:55:19,200 --> 04:55:20,160 TITLE OR ELSE YOU DON'T KNOW 8864 04:55:20,160 --> 04:55:21,360 WHAT THE TOPIC IS. 8865 04:55:21,360 --> 04:55:22,000 SO I THINK THERE MIGHT BE MORE 8866 04:55:22,000 --> 04:55:24,720 TO THE STORY THAN PEOPLE RELY ON 8867 04:55:24,720 --> 04:55:26,120 THEM OR THEY DON'T. 8868 04:55:26,120 --> 04:55:27,080 SO I'M GOING TO SHOW YOU AN 8869 04:55:27,080 --> 04:55:32,120 EXTREME EXAMPLE. 8870 04:55:32,120 --> 04:55:33,320 THIS IS THE ACTUAL PAGE I 8871 04:55:33,320 --> 04:55:36,360 SHOWED, I ASKED HER IF HER BMI 8872 04:55:36,360 --> 04:55:38,320 WAS OVERWEIGHT, UNDER WEIGHT OR 8873 04:55:38,320 --> 04:55:39,760 OBESE AND SHE COULD NOT TELL ME. 8874 04:55:39,760 --> 04:55:41,240 SHE THOUGHT IT WAS NORMAL 8875 04:55:41,240 --> 04:55:41,920 BECAUSE SHE DIDN'T THINK SHE WAS 8876 04:55:41,920 --> 04:55:43,000 OVERWEIGHT BUT SHE COULDN'T 8877 04:55:43,000 --> 04:55:44,400 ACTUALLY FIND HER BMI. 8878 04:55:44,400 --> 04:55:46,120 I ASKED HER TO READ ME THE TOP 8879 04:55:46,120 --> 04:55:47,880 LINE OF THE PAGE AND SHE READ, 8880 04:55:47,880 --> 04:55:49,320 BODY MASS INDEX USES YOUR HEAT 8881 04:55:49,320 --> 04:55:49,760 AND WEIGHT. 8882 04:55:49,760 --> 04:55:52,760 SHE COULDN'T SEE THAT HER BMI 8883 04:55:52,760 --> 04:55:54,840 WAS 23.9 BECAUSE SHE'D BEEN 8884 04:55:54,840 --> 04:55:56,200 SYSTEMATICALLY SKIPPING THE 8885 04:55:56,200 --> 04:55:58,320 FIRST LINE, ASSUMING IT WAS 8886 04:55:58,320 --> 04:55:58,920 UNIMPORTANT, I SUPPOSE. 8887 04:55:58,920 --> 04:56:00,240 SO EVEN THOUGH IT'S NOT 8888 04:56:00,240 --> 04:56:01,080 FORMATTED DIFFERENTLY FROM THE 8889 04:56:01,080 --> 04:56:03,040 REST OF THE TEXT, I THINK IT'S A 8890 04:56:03,040 --> 04:56:03,600 FASCINATING PHENOMENON. 8891 04:56:03,600 --> 04:56:05,160 I WANT TO KNOW, DID ANYBODY ELSE 8892 04:56:05,160 --> 04:56:05,680 SKIP IT? 8893 04:56:05,680 --> 04:56:07,520 YEAH. 8894 04:56:07,520 --> 04:56:07,720 YEAH. 8895 04:56:07,720 --> 04:56:11,160 AND SO WE DON'T KNOW, IS THIS -- 8896 04:56:11,160 --> 04:56:12,000 SORRY, LET ME GO TO THE NEXT 8897 04:56:12,000 --> 04:56:12,360 SLIDE. 8898 04:56:12,360 --> 04:56:14,280 SO UNTIL WE DO EYE TRACKING 8899 04:56:14,280 --> 04:56:16,160 STUDIES, WE REALLY WON'T KNOW IF 8900 04:56:16,160 --> 04:56:19,600 TITLE N NEGLECT -- IS IT ABOUT 8901 04:56:19,600 --> 04:56:20,600 DESIGN FEATURES, FORMATTING. 8902 04:56:20,600 --> 04:56:22,440 IF IT'S ABOUT FORMATTING, WHAT 8903 04:56:22,440 --> 04:56:23,760 ASPECTS OF IT? 8904 04:56:23,760 --> 04:56:25,440 IS IT ABOUT THE VIEWER'S 8905 04:56:25,440 --> 04:56:26,440 PERSONALITY OR HOW THEY'VE BEEN 8906 04:56:26,440 --> 04:56:26,880 EDUCATED? 8907 04:56:26,880 --> 04:56:28,000 WE DON'T KNOW ANY OF THESE 8908 04:56:28,000 --> 04:56:28,520 QUESTIONS. 8909 04:56:28,520 --> 04:56:31,000 SO IN THE MEANTIME, WHEN WE'RE 8910 04:56:31,000 --> 04:56:32,000 THINKING ABOUT WHICH RESULTS TO 8911 04:56:32,000 --> 04:56:32,960 RETURN, WE MIGHT CONSIDER WHAT 8912 04:56:32,960 --> 04:56:35,760 KINDS OF CONCLUSIONS PEOPLE MY 8913 04:56:35,760 --> 04:56:37,520 MITE JUMP TO IF THEY INDEED SKIP 8914 04:56:37,520 --> 04:56:37,960 THE TITLE. 8915 04:56:37,960 --> 04:56:38,960 AND IS THAT GOING TO BE A 8916 04:56:38,960 --> 04:56:40,840 THREAT, A REAL THREAT TO 8917 04:56:40,840 --> 04:56:41,200 INTERPRETATION. 8918 04:56:41,200 --> 04:56:45,360 SO THAT'S SOMETHING TO KEEP IN 8919 04:56:45,360 --> 04:56:45,680 MIND. 8920 04:56:45,680 --> 04:56:46,960 THEN MY LAST NEXT STEP IS A 8921 04:56:46,960 --> 04:56:47,320 PLEA. 8922 04:56:47,320 --> 04:56:49,600 WE REALLY NEED CENTRALIZED 8923 04:56:49,600 --> 04:56:50,480 REPOSITORIES TO BE ABLE TO SHARE 8924 04:56:50,480 --> 04:56:51,800 OUR MATERIALS WITH EACH OTHER SO 8925 04:56:51,800 --> 04:56:53,640 THAT WE'RE NOT REINVENTING THE 8926 04:56:53,640 --> 04:56:53,840 WHEEL. 8927 04:56:53,840 --> 04:56:54,640 EVERYTHING THAT I'VE SHOWN YOU 8928 04:56:54,640 --> 04:56:56,880 REMEMBER WAS INCREDIBLY 8929 04:56:56,880 --> 04:56:58,440 RESOURCE-INTENSIVE TO CREATE 8930 04:56:58,440 --> 04:57:06,720 TONKREE ANDDO DESIGN, DEVELOP A. 8931 04:57:06,720 --> 04:57:08,880 MY TEAM IS WORKING ON AN ONLINE 8932 04:57:08,880 --> 04:57:14,440 TOOLBOX THAT WILL BE CALLED THE 8933 04:57:14,440 --> 04:57:15,080 TAYLORIS -- LIKE THE ONES I'VE 8934 04:57:15,080 --> 04:57:16,480 BEEN SHOWING YOU, BUT IT STILL 8935 04:57:16,480 --> 04:57:17,680 UNDER DEVELOPMENT. 8936 04:57:17,680 --> 04:57:19,960 AND IN ANY CASE, WHEN SUCH A 8937 04:57:19,960 --> 04:57:22,280 REPOSITORY DOES COME ABOUT, IF 8938 04:57:22,280 --> 04:57:23,520 YOU'RE ALREADY AWARE OF HIGH 8939 04:57:23,520 --> 04:57:25,160 QUALITY RESOURCES, CONSIDER 8940 04:57:25,160 --> 04:57:26,480 CHOOSING VARIABLES THAT MATCH 8941 04:57:26,480 --> 04:57:29,680 THOSE EXISTING MATERIALS RATHER 8942 04:57:29,680 --> 04:57:31,480 THAN TAKING SOMETHING THAT'S 8943 04:57:31,480 --> 04:57:32,800 SIMILAR BUT NOT QUITE THE SAME 8944 04:57:32,800 --> 04:57:34,000 THAT DOESN'T QUITE MATCH WITH 8945 04:57:34,000 --> 04:57:34,440 WHAT'S AVAILABLE. 8946 04:57:34,440 --> 04:57:36,040 SO YOU'RE TAKING ADVANTAGE OF 8947 04:57:36,040 --> 04:57:36,560 THE WORK THAT PEOPLE HAVE 8948 04:57:36,560 --> 04:57:38,440 ALREADY DONE. 8949 04:57:38,440 --> 04:57:41,920 I HAVE TWO PRACTICAL 8950 04:57:41,920 --> 04:57:42,720 RECOMMENDATIONS. 8951 04:57:42,720 --> 04:57:44,400 THE FIRST IS CONSISTENT SCALING. 8952 04:57:44,400 --> 04:57:45,320 IF YOU PLAN ON SHOWING MORE THAN 8953 04:57:45,320 --> 04:57:46,920 ONE MEASURE, IT'S VERY, VERY 8954 04:57:46,920 --> 04:57:48,400 HELPFUL IF THE SCALING IS 8955 04:57:48,400 --> 04:57:48,720 CONSISTENT. 8956 04:57:48,720 --> 04:57:50,640 WHAT DO I MEAN BY THAT? 8957 04:57:50,640 --> 04:57:52,680 SO IN THIS EXAMPLE, HIGHER IS 8958 04:57:52,680 --> 04:57:52,920 BETTER. 8959 04:57:52,920 --> 04:57:54,120 ZERO IS THE WORST AT 100 IS THE 8960 04:57:54,120 --> 04:57:54,360 BEST. 8961 04:57:54,360 --> 04:57:56,520 BUT IN THIS EXAMPLE, HIGHER 8962 04:57:56,520 --> 04:57:58,040 NUMBERS INDICATE WORSE 8963 04:57:58,040 --> 04:57:58,600 PSYCHOLOGICAL DISTRESS. 8964 04:57:58,600 --> 04:57:59,960 AND THIS CAN BE VERY CONFUSING 8965 04:57:59,960 --> 04:58:02,000 FOR VIEWERS BECAUSE YOU HAVE TO 8966 04:58:02,000 --> 04:58:03,600 CHANGE GEARS IN THE MIDDLE OF 8967 04:58:03,600 --> 04:58:03,760 IT. 8968 04:58:03,760 --> 04:58:06,040 AND SO THERE ARE TIMES WHEN IT'S 8969 04:58:06,040 --> 04:58:07,080 UNAVOIDABLE, THAT YOU HAVE TO 8970 04:58:07,080 --> 04:58:08,720 PRESENT VARIABLES WITH OPPOSITE 8971 04:58:08,720 --> 04:58:09,160 SCALING. 8972 04:58:09,160 --> 04:58:11,080 A GOOD EXAMPLE IS VIRAL LOAD AND 8973 04:58:11,080 --> 04:58:11,680 CD4 COUNT. 8974 04:58:11,680 --> 04:58:13,840 YOU WANT VIRAL LOAD TO BE LOW 8975 04:58:13,840 --> 04:58:15,240 AND CD4 COUNT TO BE HIGH. 8976 04:58:15,240 --> 04:58:16,560 BUT IF YOU HAVE TO DO IT, THEN 8977 04:58:16,560 --> 04:58:18,720 YOU NEED TO CLEARLY SIGNAL TO 8978 04:58:18,720 --> 04:58:19,400 THE VIEWER THAT YOU'RE CHANGING 8979 04:58:19,400 --> 04:58:20,640 GEARS AND THAT YOU'RE SWITCHING 8980 04:58:20,640 --> 04:58:21,680 THE SCALING. 8981 04:58:21,680 --> 04:58:24,720 IF YOU HAVE THE LUXURY OF CLOIS, 8982 04:58:24,720 --> 04:58:25,560 THEN CONSIDER SELECTING RESULTS 8983 04:58:25,560 --> 04:58:27,120 THAT ARE ALL SCALED IN THE SAME 8984 04:58:27,120 --> 04:58:29,720 DIRECTION. 8985 04:58:29,720 --> 04:58:31,800 SO DON'T DO THIS. 8986 04:58:31,800 --> 04:58:33,400 MY LAST PRACTICAL RECOMMENDATION 8987 04:58:33,400 --> 04:58:36,120 IS TO SELECT FOR A COHESIVE 8988 04:58:36,120 --> 04:58:36,320 STORY. 8989 04:58:36,320 --> 04:58:37,560 WHAT DO I MEAN BY THAT? 8990 04:58:37,560 --> 04:58:39,080 I'M GOING TO SHOW YOU SOME 8991 04:58:39,080 --> 04:58:40,720 EXAMPLES FROM OUR VERY FIRST 8992 04:58:40,720 --> 04:58:43,120 PARTICIPATORY DESIGN STUDY OF 8993 04:58:43,120 --> 04:58:45,680 TAILORED INFO GRAPHICS. 8994 04:58:45,680 --> 04:58:46,320 INCIDENTALLY THESE ARE NOT GOOD, 8995 04:58:46,320 --> 04:58:47,520 YOU SHOULD NOT USE THEM. 8996 04:58:47,520 --> 04:58:50,080 SO FIRST WE SHOWED MARIA'S FRUIT 8997 04:58:50,080 --> 04:58:51,640 SERVINGS PER WEEK ALONG AL QAEDA 8998 04:58:51,640 --> 04:58:52,800 SIDE THE COHORT MEAN AND THE 8999 04:58:52,800 --> 04:58:53,440 RECOMMENDATION. 9000 04:58:53,440 --> 04:58:55,080 THIS WAS SIMULATED DATA. 9001 04:58:55,080 --> 04:58:56,920 SO EVERYONE IN OUR DESIGN 9002 04:58:56,920 --> 04:58:57,760 SESSIONS WAS LOOKING AT THE SAME 9003 04:58:57,760 --> 04:58:58,320 THING. 9004 04:58:58,320 --> 04:59:01,160 THEN WE SHOWED MARIA'S DAYS OF 9005 04:59:01,160 --> 04:59:01,560 EXERCISE PER WEEK. 9006 04:59:01,560 --> 04:59:01,920 SO FAR SO GOOD. 9007 04:59:01,920 --> 04:59:04,680 BUT WHEN WE GOT TO HERE, PEOPLE 9008 04:59:04,680 --> 04:59:06,320 COULD JUST NOT -- THEY COULD NOT 9009 04:59:06,320 --> 04:59:07,240 DEAL. 9010 04:59:07,240 --> 04:59:09,120 THEY COULD NOT ACCEPT THAT MARIA 9011 04:59:09,120 --> 04:59:10,120 WAS OVERWEIGHT BECAUSE THEY 9012 04:59:10,120 --> 04:59:11,760 ALREADY KNEW THAT SHE ATE FRUITS 9013 04:59:11,760 --> 04:59:13,880 AND VEGETABLES AND EXERCISED AND 9014 04:59:13,880 --> 04:59:15,240 CLEARLY THESE THINGS COULD NOT 9015 04:59:15,240 --> 04:59:17,040 ALL COEXIST, AND BE TRUE AT THE 9016 04:59:17,040 --> 04:59:17,400 SAME TIME. 9017 04:59:17,400 --> 04:59:20,120 SO OUR PARTICIPANTS HAD BUILT AN 9018 04:59:20,120 --> 04:59:21,680 ENTIRE NARRATIVE AROUND MARIA. 9019 04:59:21,680 --> 04:59:23,640 THEY TOLD ME SHE WAS AN 9020 04:59:23,640 --> 04:59:25,120 EDUCATOR, SHE DID GOOD THINGS 9021 04:59:25,120 --> 04:59:26,040 FOR HER COMMUNITY, THEY BUILT 9022 04:59:26,040 --> 04:59:27,680 THIS WHOLE STORY ABOUT MARIA AND 9023 04:59:27,680 --> 04:59:28,760 THAT WASN'T OUR INTENT. 9024 04:59:28,760 --> 04:59:30,080 WE WEREN'T WANTING FOR PEOPLE 9025 04:59:30,080 --> 04:59:31,160 TO, LIKE, LINK THESE THINGS 9026 04:59:31,160 --> 04:59:31,400 TOGETHER. 9027 04:59:31,400 --> 04:59:32,800 WE ENDED UP HAVING TO PUT 9028 04:59:32,800 --> 04:59:35,400 DIFFERENT NAMES ON EACH GRAPHIC. 9029 04:59:35,400 --> 04:59:37,480 BUT HUMANS ARE SO GEARED TOWARDS 9030 04:59:37,480 --> 04:59:38,800 PATTERN RECOGNITION AND 9031 04:59:38,800 --> 04:59:41,520 CONNECTING THE DOTS THAT IN 9032 04:59:41,520 --> 04:59:42,480 RETROSPECT, WE SHOULD HAVE 9033 04:59:42,480 --> 04:59:45,760 ANTICIPATED THIS WOULD HAPPEN. 9034 04:59:45,760 --> 04:59:48,680 SO WHEN YOU CAN -- SORRY, LET ME 9035 04:59:48,680 --> 04:59:51,320 FIND -- THERE WE GO. 9036 04:59:51,320 --> 04:59:52,880 WE DON'T WANT THE SITUATION WHEN 9037 04:59:52,880 --> 04:59:54,280 THAT'S NOT THE CASE, WHEN THINGS 9038 04:59:54,280 --> 04:59:56,160 DON'T GO TOGETHER, BUT YOU CAN 9039 04:59:56,160 --> 04:59:56,960 LEVERAGE THIS TENDENCY TO YOUR 9040 04:59:56,960 --> 04:59:58,520 OWN ENDS IF YOU'RE THOUGHTFUL 9041 04:59:58,520 --> 04:59:59,840 ABOUT SELECTING RESULTS THAT DO 9042 04:59:59,840 --> 05:00:04,080 PLAY WELL TOGETHER AND MAKE A 9043 05:00:04,080 --> 05:00:05,040 COHESIVE HEALTH PROMOTION STORY. 9044 05:00:05,040 --> 05:00:06,160 SO WITH THAT, I'LL TAKE 9045 05:00:06,160 --> 05:00:16,320 QUESTIONS. 9046 05:00:27,480 --> 05:00:35,040 >> 9047 05:00:35,040 --> 05:00:38,200 >>SO YOUR RESEARCH IS MAINLY 9048 05:00:38,200 --> 05:00:39,600 BASED AROUND SELF-REPORTED DATA? 9049 05:00:39,600 --> 05:00:40,040 >>YES. 9050 05:00:40,040 --> 05:00:41,680 >>SO HOW MUCH OF THAT DATA CAN 9051 05:00:41,680 --> 05:00:43,200 YOU VALIDATE? 9052 05:00:43,200 --> 05:00:44,800 OR CAN YOU VALIDATE ANY OF IT? 9053 05:00:44,800 --> 05:00:46,360 >>RIGHT. 9054 05:00:46,360 --> 05:00:47,440 SO IF PEOPLE ARE TELLING US, YOU 9055 05:00:47,440 --> 05:00:50,640 KNOW, HOW MANY FRUIT SERVINGS 9056 05:00:50,640 --> 05:00:52,560 PER WEEK, WE CAN'T BASICALLY. 9057 05:00:52,560 --> 05:00:55,520 A LOT OF THESE THINGS ARE 9058 05:00:55,520 --> 05:00:56,720 COMMUNITY SURVEYS, FOR INSTANCE, 9059 05:00:56,720 --> 05:00:58,360 THAT FIRST STUDY WAS A LARGE 9060 05:00:58,360 --> 05:00:59,680 COMMUNITY SURVEY, ALMOST 6,000 9061 05:00:59,680 --> 05:01:00,840 PEOPLE, WE CAN'T VALIDATE THAT. 9062 05:01:00,840 --> 05:01:02,160 SO WE'RE JUST TAKING PEOPLE'S 9063 05:01:02,160 --> 05:01:02,680 WORD FOR IT. 9064 05:01:02,680 --> 05:01:04,200 YOU KNOW, WHEN WE GO THROUGH AND 9065 05:01:04,200 --> 05:01:05,720 CLEAN THE DATA, WE LOOK AND SEE, 9066 05:01:05,720 --> 05:01:07,040 IS SOMEBODY GIVING US SOMETHING 9067 05:01:07,040 --> 05:01:10,600 THAT IS CLEARLY WRONG, YOU KNOW, 9068 05:01:10,600 --> 05:01:11,960 THEY'RE TELLING US THEY'RE 9069 05:01:11,960 --> 05:01:13,000 10 FEET TALL, ALTHOUGH THE 9070 05:01:13,000 --> 05:01:14,520 HEIGHT WE MEASURED OURSELVES. 9071 05:01:14,520 --> 05:01:16,040 BUT, YOU KNOW, YOU DO HAVE TO 9072 05:01:16,040 --> 05:01:18,200 KIND OF TAKE THAT INTO ACCOUNT. 9073 05:01:18,200 --> 05:01:19,400 BUT ULTIMATELY, IN RESEARCH 9074 05:01:19,400 --> 05:01:22,000 SELF-REPORTED DATA ARE ONLY AS 9075 05:01:22,000 --> 05:01:23,240 GOOD HOW FAITHFUL THE 9076 05:01:23,240 --> 05:01:24,480 PARTICIPANT IS BEING TO THEIR 9077 05:01:24,480 --> 05:01:27,240 OWN MEMORY AND TO THEIR OWN 9078 05:01:27,240 --> 05:01:27,520 EXPERIENCE. 9079 05:01:27,520 --> 05:01:32,280 THANKS. 9080 05:01:32,280 --> 05:01:34,600 >>THIS ISN'T AS MUCH A QUESTION 9081 05:01:34,600 --> 05:01:36,560 AS IT IS A COMMENT, BUT I FIND 9082 05:01:36,560 --> 05:01:38,160 THE TITLE NEGLECT TO BE SUPER 9083 05:01:38,160 --> 05:01:39,080 INTERESTING BECAUSE I THINK IT 9084 05:01:39,080 --> 05:01:41,120 SPEAKS TO SO MANY WAYS OF HOW WE 9085 05:01:41,120 --> 05:01:42,120 COMMUNICATE WITH PEOPLE. 9086 05:01:42,120 --> 05:01:44,400 DO YOU HAVE EYE TRACKING STUDIES 9087 05:01:44,400 --> 05:01:45,560 PLANNED? 9088 05:01:45,560 --> 05:01:46,160 I THINK THAT'S SUCH A GREAT WAY 9089 05:01:46,160 --> 05:01:47,120 TO TACKLE THAT. 9090 05:01:47,120 --> 05:01:50,160 >>YEAH, I MEAN, I WOULD NEED A 9091 05:01:50,160 --> 05:01:51,000 COLLABORATOR. 9092 05:01:51,000 --> 05:01:53,640 SO IF SOMEONE OUT THERE HAS EYE 9093 05:01:53,640 --> 05:01:54,720 TRACKING EXPERTISE, BECAUSE EYE 9094 05:01:54,720 --> 05:01:56,920 TRACKING IS PRETTY COMPLICATED, 9095 05:01:56,920 --> 05:01:58,600 CONTACT ME, WE'LL DO SOMETHING 9096 05:01:58,600 --> 05:02:05,600 GREAT. 9097 05:02:05,600 --> 05:02:07,280 >>I FIND MYSELF DOING THE 9098 05:02:07,280 --> 05:02:08,800 OPPOSITE, I DON'T READ THE LAST 9099 05:02:08,800 --> 05:02:11,000 TWO LINES OF AN ARTICLE OR A 9100 05:02:11,000 --> 05:02:12,520 PAPER OR SOMETHING, I JUST 9101 05:02:12,520 --> 05:02:14,600 FIGURE -- I FIGURED IT OUT BY 9102 05:02:14,600 --> 05:02:15,120 THIS POINTMENT BUT THAT'S 9103 05:02:15,120 --> 05:02:15,680 NEITHER HERE NOR THERE. 9104 05:02:15,680 --> 05:02:17,120 I WANTED TO ASK ABOUT THE SELF 9105 05:02:17,120 --> 05:02:20,760 IMAGE AND THIS IDEA THAT WHEN 9106 05:02:20,760 --> 05:02:21,440 YOU GIVE SOMEONE INFORMATION 9107 05:02:21,440 --> 05:02:22,240 THAT DOESN'T COMPORT WITH THEIR 9108 05:02:22,240 --> 05:02:26,160 VIEW OF THEMSELVES, WHAT DOES IT 9109 05:02:26,160 --> 05:02:28,200 LOOK LIKE WHEN THEY REJECT IT? 9110 05:02:28,200 --> 05:02:30,400 DO THEY REJECT THE VALIDITY OF 9111 05:02:30,400 --> 05:02:32,560 THE INFORMATION, DO THEY START 9112 05:02:32,560 --> 05:02:33,880 QUESTIONING THEIR SELF-IMAGE, DO 9113 05:02:33,880 --> 05:02:35,000 WE NOT KNOW? 9114 05:02:35,000 --> 05:02:35,360 >>I DON'T KNOW. 9115 05:02:35,360 --> 05:02:36,000 >>OKAY. 9116 05:02:36,000 --> 05:02:37,080 >>I DON'T KNOW. 9117 05:02:37,080 --> 05:02:39,280 IF SOMEONE HAS DONE THAT 9118 05:02:39,280 --> 05:02:39,880 RESEARCH, I HAVEN'T HAD THE 9119 05:02:39,880 --> 05:02:40,920 CHANCE TO STUMBLE UPON IT, BUT 9120 05:02:40,920 --> 05:02:43,920 IT IS SOMETHING THAT I DID A 9121 05:02:43,920 --> 05:02:45,720 STUDY SHOWING PEOPLE THEIR LEVEL 9122 05:02:45,720 --> 05:02:49,840 OF HAAS MA CON ASTHMA CONTROL AT 9123 05:02:49,840 --> 05:02:52,280 THERE'S A POSSIBILITY, MY ASTHMA 9124 05:02:52,280 --> 05:02:53,520 IS UNDER CONTROL, WHY ARE YOU 9125 05:02:53,520 --> 05:02:54,520 TELLING ME IT'S NOT? 9126 05:02:54,520 --> 05:02:56,880 BUT IT WAS A VERY SMALL STUDY, 9127 05:02:56,880 --> 05:02:59,720 WE ONLY HAD 10 PARTICIPANTS, OH, 9128 05:02:59,720 --> 05:03:02,400 YEAH, IT TRACKS, MY HUSBAND'S 9129 05:03:02,400 --> 05:03:04,880 ASTHMA ISN'T UNDER CONTROL. 9130 05:03:04,880 --> 05:03:06,520 ALSO A CHARACTERISTIC THAT 9131 05:03:06,520 --> 05:03:07,160 SOMEONE CAN CONSIDER 9132 05:03:07,160 --> 05:03:07,840 UNFLATTERING, THERE IS A 9133 05:03:07,840 --> 05:03:09,240 POSSIBILITY THAT PEOPLE GO THIS 9134 05:03:09,240 --> 05:03:09,800 IS JUST WRONG. 9135 05:03:09,800 --> 05:03:11,080 YOU CAN SEE WHAT HAPPENED WITH 9136 05:03:11,080 --> 05:03:11,440 MARIA. 9137 05:03:11,440 --> 05:03:12,720 THEY COULD NOT ACCEPT THAT SHE 9138 05:03:12,720 --> 05:03:16,000 WAS OVERWEIGHT. 9139 05:03:16,000 --> 05:03:17,000 THAT'S WHAT ACTUALLY STARTED 9140 05:03:17,000 --> 05:03:18,360 THIS WHOLE LINE OF INQUIRY, THIS 9141 05:03:18,360 --> 05:03:18,680 WHOLE IDEA. 9142 05:03:18,680 --> 05:03:19,920 SO THAT'S ANOTHER STUDY I 9143 05:03:19,920 --> 05:03:22,320 HAVEN'T DONE YET. 9144 05:03:22,320 --> 05:03:24,240 >>WE HAVE A ZOOM QUESTION. 9145 05:03:24,240 --> 05:03:25,600 >>SO THIS IS FROM ONE OF THE 9146 05:03:25,600 --> 05:03:26,480 PARTICIPANTS ON ZOOM. 9147 05:03:26,480 --> 05:03:29,200 SO THANK YOU FOR A GREAT TALK. 9148 05:03:29,200 --> 05:03:30,760 WHEN COMPARATORS ARE SHOWN LIKE 9149 05:03:30,760 --> 05:03:31,520 HOW YOU COMPARE TO OTHERS IN 9150 05:03:31,520 --> 05:03:32,920 YOUR AGE GROUP, IS THERE ANY 9151 05:03:32,920 --> 05:03:35,200 ANXIETY OR DISTRUST AMONG 9152 05:03:35,200 --> 05:03:36,680 PARTICIPANTS WHEN THE RESULT IS 9153 05:03:36,680 --> 05:03:41,320 PERCEIVED AS BEING LESS IN SOME 9154 05:03:41,320 --> 05:03:41,480 WAY? 9155 05:03:41,480 --> 05:03:42,720 >>YOU KNOW, I CAN'T SPEAK TO 9156 05:03:42,720 --> 05:03:47,520 THAT SPECIFICALLY. 9157 05:03:47,520 --> 05:03:48,120 BECAUSE WE -- MY RESEARCH HAS 9158 05:03:48,120 --> 05:03:50,280 BEEN PRIMARILY ABOUT DESIGNING 9159 05:03:50,280 --> 05:03:51,360 THE STUFF RATHER THAN ACTUALLY 9160 05:03:51,360 --> 05:03:52,920 GIVING IT TO PEOPLE. 9161 05:03:52,920 --> 05:03:54,520 WE DID DO SOME COMMUNITY 9162 05:03:54,520 --> 05:03:55,720 SESSIONS WHERE WE GAVE PEOPLE 9163 05:03:55,720 --> 05:03:57,560 THEIR PACKETS AND WE HAD 9164 05:03:57,560 --> 05:03:58,760 RESEARCH STAFF AVAILABLE TO 9165 05:03:58,760 --> 05:03:59,280 ANSWER QUESTIONS ABOUT IT. 9166 05:03:59,280 --> 05:04:01,600 BUT AGAIN, WITH SELF-REPORTED 9167 05:04:01,600 --> 05:04:04,800 RESULTS, PEOPLE -- THEY HAVE 9168 05:04:04,800 --> 05:04:06,440 SOME IDEA ABOUT THEMSELVES AND 9169 05:04:06,440 --> 05:04:07,000 HOW THEY COMPARE TO OTHERS. 9170 05:04:07,000 --> 05:04:09,000 WE HAD PEOPLE WHO -- WE TRIED TO 9171 05:04:09,000 --> 05:04:11,440 DO A COMPREHENSION STUDY. 9172 05:04:11,440 --> 05:04:14,680 YOU SAW THAT TEXT SLIDE, AND 9173 05:04:14,680 --> 05:04:16,040 TRIED TO ASK PEOPLE 9174 05:04:16,040 --> 05:04:16,640 COMPREHENSION QUESTIONS ABOUT 9175 05:04:16,640 --> 05:04:18,320 THESE THINGS AND A LOT OF TIMES 9176 05:04:18,320 --> 05:04:19,560 PEOPLE WOULDN'T LOOK AT THE 9177 05:04:19,560 --> 05:04:19,920 INFOGRAPHIC. 9178 05:04:19,920 --> 05:04:21,680 THEY WOULD JUST SAY I THINK I'M 9179 05:04:21,680 --> 05:04:23,240 MORE DEPRESSED THAN OTHER WOMEN 9180 05:04:23,240 --> 05:04:25,400 MY AGE AND THEY'D JUST GIVE US 9181 05:04:25,400 --> 05:04:27,680 THEIR OPINION BUT THEN WE'D SAY 9182 05:04:27,680 --> 05:04:30,640 OKAY BUT WHAT DOES THE 9183 05:04:30,640 --> 05:04:31,800 INFOGRAPHIC SAY? 9184 05:04:31,800 --> 05:04:33,360 AND WE HAD A HARD TIME GETTING 9185 05:04:33,360 --> 05:04:34,240 THEM TO ANSWER QUESTIONS LIKE 9186 05:04:34,240 --> 05:04:39,040 THAT. 9187 05:04:39,040 --> 05:04:41,560 >>CLAY? 9188 05:04:41,560 --> 05:04:42,520 ANOTHER QUESTION FROM THE 9189 05:04:42,520 --> 05:04:43,000 AUDIENCE. 9190 05:04:43,000 --> 05:04:44,400 SOMEWHAT SIMILAR. 9191 05:04:44,400 --> 05:04:47,880 FOR COHESIVE STORIES WITH 9192 05:04:47,880 --> 05:04:55,760 RESULTS HOW DO YOU AVOID 9193 05:04:55,760 --> 05:04:56,560 REINFORCING -- THE DATA -- 9194 05:04:56,560 --> 05:04:59,080 >>WE SAW INSTANCES IN WHICH 9195 05:04:59,080 --> 05:05:00,520 PEOPLE -- WE WOULD SHOW LIKE A 9196 05:05:00,520 --> 05:05:02,440 FRUIT OR VEGETABLE 9197 05:05:02,440 --> 05:05:03,520 RECOMMENDATION OR EXERCISE 9198 05:05:03,520 --> 05:05:04,560 RECOMMENDATION AND THEY WOULD 9199 05:05:04,560 --> 05:05:06,560 SAY, YEAH, BUT DOES THIS APPLY 9200 05:05:06,560 --> 05:05:07,560 TO OLDER PEOPLE? 9201 05:05:07,560 --> 05:05:08,760 OR, YOU KNOW, I DON'T KNOW IF 9202 05:05:08,760 --> 05:05:14,320 THIS APPLIES TO ME. 9203 05:05:14,320 --> 05:05:15,640 AND SO PART OF IT WAS THE 9204 05:05:15,640 --> 05:05:18,840 SOURCE, DOES THE SOURCE HAVE 9205 05:05:18,840 --> 05:05:19,720 CREDIBILITY. 9206 05:05:19,720 --> 05:05:21,040 IF IT'S COMING FROM THEIR OWN 9207 05:05:21,040 --> 05:05:22,440 DOCTOR, IF IT SAYS CDC 9208 05:05:22,440 --> 05:05:23,360 RECOMMENDATION, OR IF IT'S LIKE, 9209 05:05:23,360 --> 05:05:24,400 THIS IS THE RECOMMENDATION FOR 9210 05:05:24,400 --> 05:05:25,320 WOMEN YOUR AGE. 9211 05:05:25,320 --> 05:05:29,200 AND THEN PEOPLE GO, OH, OKAY, 9212 05:05:29,200 --> 05:05:31,080 BUT WE HEARD LOTS OF WIDELY 9213 05:05:31,080 --> 05:05:32,560 VARIED OPINIONS ABOUT HOW MUCH 9214 05:05:32,560 --> 05:05:34,520 FRUIT AND VEGETABLES PEOPLE 9215 05:05:34,520 --> 05:05:34,840 SHOULD EAT. 9216 05:05:34,840 --> 05:05:36,400 REALLY WIDELY VARIED. 9217 05:05:36,400 --> 05:05:37,840 PEOPLE HAD VERY, VERY STRONG 9218 05:05:37,840 --> 05:05:40,120 OPINIONS ABOUT THOSE THINGS. 9219 05:05:40,120 --> 05:05:41,760 SO I THINK SOMETIMES THAT'S 9220 05:05:41,760 --> 05:05:43,080 GOING TO BE AN UPHILL BATTLE. 9221 05:05:43,080 --> 05:05:44,400 IF PEOPLE REALLY HAVE A FIRM 9222 05:05:44,400 --> 05:05:45,960 IDEA OF THIS IS THE WAY IT 9223 05:05:45,960 --> 05:05:47,000 SHOULD BE, PUSHING AGAINST THAT 9224 05:05:47,000 --> 05:05:49,000 IN ANY WAY MIGHT NOT BE -- MIGHT 9225 05:05:49,000 --> 05:05:54,800 BE A NON-STARTER. 9226 05:05:54,800 --> 05:05:56,080 >>I THINK WE SHOULD MOVE ON TO 9227 05:05:56,080 --> 05:05:56,920 THE NEXT ONE. 9228 05:05:56,920 --> 05:06:00,800 THANK YOU SO MUCH, ADRIANA. 9229 05:06:00,800 --> 05:06:01,120 >>THANK YOU. 9230 05:06:01,120 --> 05:06:01,880 >>NEXT WE'LL HEAR FROM JULIE 9231 05:06:01,880 --> 05:06:11,960 SAPP. 9232 05:06:28,640 --> 05:06:30,120 >>HI, GOOD AFTERNOON. 9233 05:06:30,120 --> 05:06:34,160 IS THE GREEN LIGHT WORKING? 9234 05:06:34,160 --> 05:06:34,360 SUPER. 9235 05:06:34,360 --> 05:06:34,920 THANK YOU. 9236 05:06:34,920 --> 05:06:35,680 THANKS SO MUCH FOR THE 9237 05:06:35,680 --> 05:06:36,560 OPPORTUNITY TO SPEAK WITH YOU 9238 05:06:36,560 --> 05:06:38,240 TODAY. 9239 05:06:38,240 --> 05:06:43,040 LIKE BEN, I -- LIKE EVERYBODY, 9240 05:06:43,040 --> 05:06:44,360 I'M TRYING TO FIGURE OUT HOW TO 9241 05:06:44,360 --> 05:06:54,640 ADVANCE THE SLIDE. 9242 05:07:04,960 --> 05:07:07,480 I'M ALSO A FEDERAL GOVERNMENT 9243 05:07:07,480 --> 05:07:08,080 EMPLOYEE AND I HAVE NO OTHER 9244 05:07:08,080 --> 05:07:08,560 CONFLICTS TO DECLARE. 9245 05:07:08,560 --> 05:07:09,680 BUT I THINK THE OTHER IMPORTANT 9246 05:07:09,680 --> 05:07:11,640 PIECE TO MENTION HERE IS I'M 9247 05:07:11,640 --> 05:07:13,320 COMING AT THIS FROM THE 9248 05:07:13,320 --> 05:07:15,160 PERSPECTIVE OF BOTH BEING A 9249 05:07:15,160 --> 05:07:18,640 CLINICIAN, SO I RETURN LOTS OF 9250 05:07:18,640 --> 05:07:21,560 INDIVIDUAL RESEARCH RESULTS TO 9251 05:07:21,560 --> 05:07:22,800 PEOPLE IN THE NIEHS STUDY THAT 9252 05:07:22,800 --> 05:07:24,200 BEN MENTIONED BUT ALSO STUDY 9253 05:07:24,200 --> 05:07:28,920 THIS PROCESS. 9254 05:07:28,920 --> 05:07:30,440 SO I'M ALSO GOING TO START OFF 9255 05:07:30,440 --> 05:07:32,080 MY TALK BY FOCUSING ON A 9256 05:07:32,080 --> 05:07:33,640 SPECIFIC SET OF GENOMIC VARIANTS 9257 05:07:33,640 --> 05:07:35,880 THAT WE CALL SECONDARY VARIANTS, 9258 05:07:35,880 --> 05:07:37,240 AND BEN AND OTHERS HAVE 9259 05:07:37,240 --> 05:07:37,880 MENTIONED THESE AS WELL. 9260 05:07:37,880 --> 05:07:40,520 I THINK A MAJOR POINT I WANT TO 9261 05:07:40,520 --> 05:07:42,680 MAKE ON THIS SLIDE IS, EVEN 9262 05:07:42,680 --> 05:07:44,120 THOUGH A LOT OF MY TALK IS 9263 05:07:44,120 --> 05:07:47,080 FOCUSED EXCLUSIVELY ON GENOMIC 9264 05:07:47,080 --> 05:07:48,160 VARIANTS, I THINK THERE'S A 9265 05:07:48,160 --> 05:07:49,360 REALLY GOOD CASE TO KIND OF 9266 05:07:49,360 --> 05:07:51,880 REJECT AN ARGUMENT OF GENETIC 9267 05:07:51,880 --> 05:07:52,240 EXCEPTIONALISM. 9268 05:07:52,240 --> 05:07:52,960 I THINK THERE'S ACTUALLY LOTS OF 9269 05:07:52,960 --> 05:07:53,960 THINGS THAT WE CAN LEARN FROM 9270 05:07:53,960 --> 05:07:56,560 WHAT WE UNDERSTAND OUTCOMES TO 9271 05:07:56,560 --> 05:07:58,240 BE IN A POPULATION OF PEOPLE 9272 05:07:58,240 --> 05:08:00,400 WHO'VE LEARNED RESULTS THAT ARE 9273 05:08:00,400 --> 05:08:02,800 MAYBE NOT GENETIC BUT HAVE SOME 9274 05:08:02,800 --> 05:08:04,280 IMPORTANT SIMILARITIES BETWEEN 9275 05:08:04,280 --> 05:08:05,440 SOME OF THESE TYPES OF FINDINGS. 9276 05:08:05,440 --> 05:08:07,960 SO I'M GOING FOCUS ON THIS SET 9277 05:08:07,960 --> 05:08:10,160 OF HIGHLY MEDICALLY ACTIONABLE 9278 05:08:10,160 --> 05:08:11,880 FINDINGS. 9279 05:08:11,880 --> 05:08:12,800 THE AMERICAN COLLEGE OF GENETICS 9280 05:08:12,800 --> 05:08:16,680 AND GENOMICS DELINEATING THESE 9281 05:08:16,680 --> 05:08:18,320 FINDINGS AND I THINK ANOTHER 9282 05:08:18,320 --> 05:08:19,120 IMPORTANT CONSIDERATION HERE IS 9283 05:08:19,120 --> 05:08:20,080 THESE ARE WORTH THINKING ABOUT 9284 05:08:20,080 --> 05:08:23,760 POPOTENTIALLY FOR ECHO BECAUSE F 9285 05:08:23,760 --> 05:08:24,560 THE 39 DISORDERS THAT ARE 9286 05:08:24,560 --> 05:08:26,080 CURRENTLY ON THE LIST TO BE 9287 05:08:26,080 --> 05:08:29,040 RECOMMENDED FOR RETURN TO 9288 05:08:29,040 --> 05:08:29,800 INDIVIDUALS, 35 OF THOSE MAY 9289 05:08:29,800 --> 05:08:31,160 HAVE SOME SORT OF CHILDHOOD 9290 05:08:31,160 --> 05:08:31,560 ONSET. 9291 05:08:31,560 --> 05:08:33,520 SO WE'RE NOT JUST TALKING ABOUT 9292 05:08:33,520 --> 05:08:34,960 ADULT ONSET CONDITIONS HERE, BUT 9293 05:08:34,960 --> 05:08:36,360 AGAIN, THESE ARE THE TYPES OF 9294 05:08:36,360 --> 05:08:37,440 FINDINGS THAT IF YOU KNEW ABOUT 9295 05:08:37,440 --> 05:08:39,360 THEM, YOU COULD TAKE ACTION THAT 9296 05:08:39,360 --> 05:08:40,000 WOULD, YOU KNOW, HOPEFULLY SAVE 9297 05:08:40,000 --> 05:08:43,120 YOUR LIFE. 9298 05:08:43,120 --> 05:08:44,040 THAT'S ACTUALLY WHAT'S SHOWN 9299 05:08:44,040 --> 05:08:44,880 HERE. 9300 05:08:44,880 --> 05:08:46,280 SO IDEALLY WHAT WE WERE 9301 05:08:46,280 --> 05:08:48,480 OPERATING WHEN WE RETURN THESE 9302 05:08:48,480 --> 05:08:49,520 TYPES OF FINDINGS TO PEOPLE IS 9303 05:08:49,520 --> 05:08:54,280 THAT WE'RE GIVING THEM 9304 05:08:54,280 --> 05:08:54,880 OPPORTUNITIES TO CHANGE THEIR 9305 05:08:54,880 --> 05:08:55,720 HEALTHCARE SO THEY GET MORE 9306 05:08:55,720 --> 05:08:57,240 PERSONALIZED CARE THAT WE HOPE, 9307 05:08:57,240 --> 05:08:58,560 AGAIN, IMPROVES THEIR HEALTH 9308 05:08:58,560 --> 05:09:00,760 OUTCOMES, BUT WE ALSO THINK IT 9309 05:09:00,760 --> 05:09:01,960 WOULD BE GREAT IF THIS BENEFIT 9310 05:09:01,960 --> 05:09:03,800 COULD EX-TEND TO THEIR FAMILY 9311 05:09:03,800 --> 05:09:05,360 BECAUSE THESE ARE GENETIC 9312 05:09:05,360 --> 05:09:06,960 FINDINGS, THEY'RE MOSTLY 9313 05:09:06,960 --> 05:09:09,600 DOMINANT FINDINGS WHICH MEANS 9314 05:09:09,600 --> 05:09:11,000 THAT FIRST DEGREE RELATIVES ARE 9315 05:09:11,000 --> 05:09:12,760 AT A 50% CHANCE TO SHARE THAT 9316 05:09:12,760 --> 05:09:13,400 PARTICULAR VARIANT WITH THE 9317 05:09:13,400 --> 05:09:14,440 FIRST PERSON WHO GOT THE 9318 05:09:14,440 --> 05:09:15,840 VARIANT, SO THEIR FAMILY MEMBERS 9319 05:09:15,840 --> 05:09:17,200 MIGHT ALSO EXPERIENCE SOME 9320 05:09:17,200 --> 05:09:18,160 BENEFIT IF THEY INFORM THEIR 9321 05:09:18,160 --> 05:09:23,440 FAMILY MEMBERS. 9322 05:09:23,440 --> 05:09:25,920 I DON'T WANT TO BELABOR THE NEXT 9323 05:09:25,920 --> 05:09:27,320 SLIDES TOO MUCH, BUT I THINK 9324 05:09:27,320 --> 05:09:30,200 THAT WHEN WE THINK ABOUT THE 9325 05:09:30,200 --> 05:09:32,960 OUTCOMES THAT WE CAN EXPECT ONCE 9326 05:09:32,960 --> 05:09:34,640 PEOPLE RECEIVE THESE KINDS OF 9327 05:09:34,640 --> 05:09:36,560 FINDINGS, I WILL SAY THAT THE 9328 05:09:36,560 --> 05:09:40,720 RATIO OF DATA IN THE EMPIRICAL 9329 05:09:40,720 --> 05:09:41,680 LITERATURE ABOUT HOW PEOPLE 9330 05:09:41,680 --> 05:09:43,040 FEEL, WHAT THEIR ATTITUDES MIGHT 9331 05:09:43,040 --> 05:09:44,360 BE TOWARDS RECEIVING THESE 9332 05:09:44,360 --> 05:09:45,840 RESULTS, FAR OUTWEIGHS ANY OF 9333 05:09:45,840 --> 05:09:47,440 OUR OUTCOME DATA. 9334 05:09:47,440 --> 05:09:48,440 SO I THINK THAT'S AN IMPORTANT 9335 05:09:48,440 --> 05:09:49,960 CAVEAT, AND PROBABLY A MAJOR 9336 05:09:49,960 --> 05:09:50,920 POINT HERE, IS TO THINK THAT WE 9337 05:09:50,920 --> 05:09:52,680 NEED TO -- YOU KNOW, THAT'S A 9338 05:09:52,680 --> 05:09:55,760 RESEARCH GAP THAT WE'D REALLY 9339 05:09:55,760 --> 05:09:56,720 BENEFIT FROM IMPROVING. 9340 05:09:56,720 --> 05:09:58,280 AGAIN, I'M GOING TO SKIP OVER 9341 05:09:58,280 --> 05:09:59,360 THIS BECAUSE PRETTY MUCH EVERY 9342 05:09:59,360 --> 05:10:00,360 SINGLE PERSON HAS MENTIONED THIS 9343 05:10:00,360 --> 05:10:03,960 IDEA THAT WHEN WE QUERY PEOPLE 9344 05:10:03,960 --> 05:10:05,280 ABOUT WHETHER OR NOT THEY WANT 9345 05:10:05,280 --> 05:10:06,160 THESE KINDS OF FINDINGS, PEOPLE 9346 05:10:06,160 --> 05:10:07,560 TELL US THERE'S AN OVERWHELMING 9347 05:10:07,560 --> 05:10:08,760 PREFERENCE TO RECEIVE THIS KIND 9348 05:10:08,760 --> 05:10:10,320 OF INFORMATION, PEOPLE WILL SAY 9349 05:10:10,320 --> 05:10:12,800 THEY WANT EVERYTHING, PEOPLE 9350 05:10:12,800 --> 05:10:14,000 WILL SAY THAT THEY WANT THEIR 9351 05:10:14,000 --> 05:10:16,200 NORMAL DATA AND ALSO THEIR RAW 9352 05:10:16,200 --> 05:10:17,400 DATA. 9353 05:10:17,400 --> 05:10:19,760 A VERY SMALL MINORITY OF PEOPLE 9354 05:10:19,760 --> 05:10:21,280 WANT NO INFORMATION OR 9355 05:10:21,280 --> 05:10:23,280 INFORMATION THAT'S ONLY RELATED 9356 05:10:23,280 --> 05:10:26,360 TO THE PRIMARY REASON WHY THE 9357 05:10:26,360 --> 05:10:29,480 TESTING WAS DONE. 9358 05:10:29,480 --> 05:10:31,040 WHEN WE ASK PEOPLE WHY, 9359 05:10:31,040 --> 05:10:33,280 ESPECIALLY AS IT PERTAINS TO 9360 05:10:33,280 --> 05:10:34,440 GENOMIC DATA, THEY WILL SAY, 9361 05:10:34,440 --> 05:10:36,120 IT'S EMPOWERING, BECAUSE IT 9362 05:10:36,120 --> 05:10:37,840 COULD DO SOMETHING THAT COULD 9363 05:10:37,840 --> 05:10:39,840 HELP ME PREVENT DISEASE BECAUSE 9364 05:10:39,840 --> 05:10:41,360 IT COULD BE OF BENEFIT TO MYSELF 9365 05:10:41,360 --> 05:10:44,000 OR TO MY FAMILY, BUT PEOPLE ALSO 9366 05:10:44,000 --> 05:10:46,120 CITE THESE CONCEPTS THAT ARE 9367 05:10:46,120 --> 05:10:46,920 MAYBE MORE IN THE PERSONAL 9368 05:10:46,920 --> 05:10:49,400 UTILITY REALM SUCH AS I'M JUST 9369 05:10:49,400 --> 05:10:50,720 CURIOUS, I JUST WANT KNOW, OR 9370 05:10:50,720 --> 05:10:52,240 BECAUSE IT WILL ALLOW ME TO 9371 05:10:52,240 --> 05:10:53,800 ENGAGE IN SOME SORT OF SELF 9372 05:10:53,800 --> 05:10:54,920 EXPLORATION LIKE UNDERSTANDING 9373 05:10:54,920 --> 05:10:58,320 MY ANCESTRY OR SOMETHING LIKE 9374 05:10:58,320 --> 05:10:59,160 THAT. 9375 05:10:59,160 --> 05:11:00,280 WHEN YOU ASK PEOPLE AGAIN TO 9376 05:11:00,280 --> 05:11:02,520 KIND OF DELVE INTO THESE THINGS, 9377 05:11:02,520 --> 05:11:04,720 THEY WILL CITE CONCERNS SUCH AS 9378 05:11:04,720 --> 05:11:06,080 PRIVACY OR BURDEN OF KNOWLEDGE 9379 05:11:06,080 --> 05:11:07,280 THAT MIGHT ADVERSELY AFFECT 9380 05:11:07,280 --> 05:11:08,760 THEIR LIFE IN SOME WAY. 9381 05:11:08,760 --> 05:11:10,320 THESE ATTITUDES OR CONCERNS ARE 9382 05:11:10,320 --> 05:11:11,280 FACTORED IN BUT THEY DON'T 9383 05:11:11,280 --> 05:11:13,520 OVERRIDE THIS REALLY CLEAR 9384 05:11:13,520 --> 05:11:14,760 EXPRESSED PREFERENCE FOR 9385 05:11:14,760 --> 05:11:17,800 LEARNING THESE KINDS OF RESULTS 9386 05:11:17,800 --> 05:11:19,880 FROM BEING IN RESEARCH STUDIES. 9387 05:11:19,880 --> 05:11:21,840 SO I THINK WHEN WE COME BACK TO 9388 05:11:21,840 --> 05:11:25,240 OUR IDEAL PARADIGM OF WHAT 9389 05:11:25,240 --> 05:11:25,840 HAPPENS AFTER WE SHARE THIS 9390 05:11:25,840 --> 05:11:26,560 INFORMATION WITH PEOPLE, WE CAN 9391 05:11:26,560 --> 05:11:31,280 LOOK TO THE LITERATURE TO SEE TO 9392 05:11:31,280 --> 05:11:33,680 WHAT EXTENT DO THESE OUTCOMES OF 9393 05:11:33,680 --> 05:11:35,400 INTEREST TO US ACTUALLY HAPPEN. 9394 05:11:35,400 --> 05:11:36,960 AND OUR GROUP PUBLISHED A REVIEW 9395 05:11:36,960 --> 05:11:38,520 JUST ABOUT TWO YEARS AGO NOW, 9396 05:11:38,520 --> 05:11:41,720 WHERE WE LOOKED FOR EVIDENCE OF 9397 05:11:41,720 --> 05:11:43,480 ALL OF THESE DIFFERENT OUTCOMES 9398 05:11:43,480 --> 05:11:45,520 IN THE RESEARCH LITERATURE OVER 9399 05:11:45,520 --> 05:11:46,560 THE LAST 15 YEARS AND THE 9400 05:11:46,560 --> 05:11:48,880 CIRCLES THAT ARE SHOWN THERE ARE 9401 05:11:48,880 --> 05:11:51,280 PROPORTIONAL TO THE INDIVIDUAL 9402 05:11:51,280 --> 05:11:53,120 REPORTS THAT WE FOUND IN THE 9403 05:11:53,120 --> 05:11:54,640 LITERATURE AND SO YOU CAN JUST 9404 05:11:54,640 --> 05:11:58,040 SEE BY THE SIZE OF THE CIRCLE 9405 05:11:58,040 --> 05:12:00,040 THERE THAT WE KNOW MUCH MORE 9406 05:12:00,040 --> 05:12:01,760 ABOUT HOW THESE KINDS OF GENOMIC 9407 05:12:01,760 --> 05:12:05,280 FINDINGS ARE DISCLOSED TO PEOPLE 9408 05:12:05,280 --> 05:12:06,040 AND WHAT KINDS OF 9409 05:12:06,040 --> 05:12:06,600 RECOMMENDATIONS ARE MADE 9410 05:12:06,600 --> 05:12:09,440 COMPARED TO THE DEGREE TO WHICH 9411 05:12:09,440 --> 05:12:10,320 THESE ARE INDIVIDUALS THAT ARE 9412 05:12:10,320 --> 05:12:12,520 ACTUALLY ENGAGING IN 9413 05:12:12,520 --> 05:12:13,520 DISEASE-SPECIFIC EVALUATIONS 9414 05:12:13,520 --> 05:12:19,080 THAT RESULT IN THE KINDS OF LIFE 9415 05:12:19,080 --> 05:12:19,760 PRESERVERRING HEALTHCARE ACTIONS 9416 05:12:19,760 --> 05:12:21,040 THAT WE WOULD WANT THEM TO TAKE. 9417 05:12:21,040 --> 05:12:23,240 SO I THINK, AGAIN, THIS REALLY 9418 05:12:23,240 --> 05:12:26,040 SPEAKS TO JEFF'S POINT OF THE 9419 05:12:26,040 --> 05:12:27,200 TWO SIDES OF THE CLINICAL 9420 05:12:27,200 --> 05:12:28,600 UTILITY COIN, JUST BECAUSE 9421 05:12:28,600 --> 05:12:29,600 SOMETHING MAYBE HAS THE 9422 05:12:29,600 --> 05:12:32,240 POTENTIAL TO IMPROVE SOMEONE'S 9423 05:12:32,240 --> 05:12:33,760 HEALTH, DO THEY ACTUALLY TAKE 9424 05:12:33,760 --> 05:12:35,280 THE ACTIONS OR ARE THEY ABLE TO 9425 05:12:35,280 --> 05:12:36,960 TAKE THE ACTIONS THAT ACTUALLY 9426 05:12:36,960 --> 05:12:40,760 CAN RESULT IN THAT AS WELL 9427 05:12:40,760 --> 05:12:46,120 FLEURCHLT BUT WBUTWHEN WE LOOK F 9428 05:12:46,120 --> 05:12:47,200 INDIVIDUALS, I THINK THERE ARE A 9429 05:12:47,200 --> 05:12:51,240 COUPLE DATA POINT THAT WE CAN 9430 05:12:51,240 --> 05:12:51,480 LEARN. 9431 05:12:51,480 --> 05:12:55,000 A LOT OF INK HAS BEEN SPILLED 9432 05:12:55,000 --> 05:12:56,320 ABOUT THE POTENTIAL FOR 9433 05:12:56,320 --> 05:12:59,600 PSYCHOLOGICAL HARM WHEN YOU 9434 05:12:59,600 --> 05:13:00,920 SHARE GENOMIC DATA WITH 9435 05:13:00,920 --> 05:13:02,320 INDIVIDUALS, BUT I THINK THAT 9436 05:13:02,320 --> 05:13:04,000 WHEN YOU LOOK IN THE LITERATURE, 9437 05:13:04,000 --> 05:13:06,720 THERE'S JUST NOT A TON OF 9438 05:13:06,720 --> 05:13:07,400 EVIDENCE FOR THAT. 9439 05:13:07,400 --> 05:13:09,000 WHEN YOU ASK PEOPLE IN AN 9440 05:13:09,000 --> 05:13:10,080 OPEN-ENDED WAY WHAT KINDS OF 9441 05:13:10,080 --> 05:13:11,280 EMOTIONS DID YOU EXPERIENCE 9442 05:13:11,280 --> 05:13:13,800 AFTER YOU RECEIVED YOUR 9443 05:13:13,800 --> 05:13:15,240 FINDINGS, PEOPLE WILL 9444 05:13:15,240 --> 05:13:16,080 VOLUNTARILY, YOU KNOW, REPORT A 9445 05:13:16,080 --> 05:13:19,600 HUGE RANGE OF EMOTIONS, FROM 9446 05:13:19,600 --> 05:13:21,760 SURPRISE TO RELIEF, SADNESS IF 9447 05:13:21,760 --> 05:13:24,080 IT'S, AGAIN, SOMETHING THAT 9448 05:13:24,080 --> 05:13:25,160 CONFERS INCREASED RISK FOR A 9449 05:13:25,160 --> 05:13:26,480 HEALTH CONDITION. 9450 05:13:26,480 --> 05:13:27,560 BUT WHEN YOU EXPLICITLY ASK 9451 05:13:27,560 --> 05:13:30,560 PEOPLE, DID YOU -- DO YOU REA 9452 05:13:30,560 --> 05:13:31,640 GRET CHECKING THAT BOX THAT 9453 05:13:31,640 --> 05:13:33,120 ALLOWED YOU TO RECEIVE THESE 9454 05:13:33,120 --> 05:13:36,000 KINDS OF RESULTS OR SAYING YES 9455 05:13:36,000 --> 05:13:37,000 WHEN SOMEONE ASKED YOU WHETHER 9456 05:13:37,000 --> 05:13:38,760 OR NOT YOU MIGHT WANT TO, THIS 9457 05:13:38,760 --> 05:13:41,480 IS A FINDING THAT IS REPORTED IN 9458 05:13:41,480 --> 05:13:44,560 REALLY A VERY SMALL MINORITY OF 9459 05:13:44,560 --> 05:13:45,440 PARTICIPANTS. 9460 05:13:45,440 --> 05:13:47,280 SIMILARLY, WHEN WE DO 9461 05:13:47,280 --> 05:13:48,080 LONGITUDINAL MEASUREMENTS, AND 9462 05:13:48,080 --> 05:13:49,200 AGAIN, THERE'S NOT A TON OF DATA 9463 05:13:49,200 --> 05:13:50,640 ON THIS, BUT WHEN YOU LOOK AT 9464 05:13:50,640 --> 05:13:52,720 THINGS LIKE DEPRESSION AND 9465 05:13:52,720 --> 05:13:54,240 ANXIETY, THEY'RE KIND OF REALLY 9466 05:13:54,240 --> 05:13:55,240 UNCHANGED WHEN YOU LOOK AT THEM 9467 05:13:55,240 --> 05:13:57,640 IN A KIND OF PRE/POST WAY. 9468 05:13:57,640 --> 05:13:58,800 AND INDEED, SOME PEOPLE EVEN 9469 05:13:58,800 --> 05:14:00,440 FORGET THAT THESE HIGHLY 9470 05:14:00,440 --> 05:14:01,360 MEDICALLY ACTIONABLE FINDINGS 9471 05:14:01,360 --> 05:14:02,680 HAVE BEEN SHARED WITH THEM. 9472 05:14:02,680 --> 05:14:03,320 THERE ARE A COUPLE REPORTS IN 9473 05:14:03,320 --> 05:14:06,240 THE LITERATURE OF PEOPLE 9474 05:14:06,240 --> 05:14:07,120 APPROACHING INDIVIDUALS WHO'VE 9475 05:14:07,120 --> 05:14:09,520 RECEIVED THESE KINDS OF GENOMIC 9476 05:14:09,520 --> 05:14:10,280 FINDINGS FROM BEING IN A 9477 05:14:10,280 --> 05:14:11,480 RESEARCH STUDY AND THE 9478 05:14:11,480 --> 05:14:13,240 PARTICIPANT WILL SAY, YOU KNOW, 9479 05:14:13,240 --> 05:14:14,720 THANK YOU FOR REMINDING ME OF 9480 05:14:14,720 --> 05:14:16,440 THAT, I HAD TOTALLY FORGOTTEN 9481 05:14:16,440 --> 05:14:17,440 THAT SOMEONE HAD SHARED THAT 9482 05:14:17,440 --> 05:14:17,880 WITH ME. 9483 05:14:17,880 --> 05:14:22,840 SO I THINK, AGAIN, THE EVIDENCE 9484 05:14:22,840 --> 05:14:24,240 HERE IS LEANING TOWARDS THE LINE 9485 05:14:24,240 --> 05:14:28,080 OF THIS IS NOT SOMETHING THAT WE 9486 05:14:28,080 --> 05:14:29,520 SHOULD SIGNIFICANT RISK OF 9487 05:14:29,520 --> 05:14:30,680 ADVERSE PSYCHOLOGICAL OUTCOMES 9488 05:14:30,680 --> 05:14:31,600 IS REALLY NOT SOMETHING THAT 9489 05:14:31,600 --> 05:14:34,920 SEEMS TO BE BROADLY REPORTED. 9490 05:14:34,920 --> 05:14:36,400 SO ANOTHER DESIRED OUTCOME THAT 9491 05:14:36,400 --> 05:14:39,160 WE MIGHT WANT TO SEE FROM 9492 05:14:39,160 --> 05:14:40,040 INDIVIDUALS AFTER THEY RECEIVE 9493 05:14:40,040 --> 05:14:42,000 THESE KINDS OF FINDINGS IS THAT 9494 05:14:42,000 --> 05:14:42,760 THEY SHARE THEM WITH THEIR 9495 05:14:42,760 --> 05:14:44,440 FAMILY MEMBERS, AS I MENTIONED 9496 05:14:44,440 --> 05:14:46,480 EARLIER, AND WITH THEIR 9497 05:14:46,480 --> 05:14:47,280 PROVIDERS, SO THAT THEY CAN 9498 05:14:47,280 --> 05:14:48,440 TAYLOR THEIR HEALTHCARE. 9499 05:14:48,440 --> 05:14:49,760 AND WHEN THIS HAS BEEN MEASURED, 9500 05:14:49,760 --> 05:14:52,200 WE FOUND THAT HIGH NUMBERS OF 9501 05:14:52,200 --> 05:14:54,680 PEOPLE DO REPORT SHARING THESE 9502 05:14:54,680 --> 05:14:56,000 RESULTS WITH THEIR FAMILY, 9503 05:14:56,000 --> 05:14:58,120 ESPECIALLY CLOSE RELATIVES. 9504 05:14:58,120 --> 05:15:03,120 SOMETIMES PEOPLE DON'T SEEM TO 9505 05:15:03,120 --> 05:15:04,680 HAVE -- THERE'S NOT A LOT OF 9506 05:15:04,680 --> 05:15:05,960 EVIDENCE FOR STRATEGIC SHARING 9507 05:15:05,960 --> 05:15:08,560 IN TERMS OF DEGREE OF FAMILIAL 9508 05:15:08,560 --> 05:15:09,480 RELATIONSHIP, SO A LOT OF TIMES 9509 05:15:09,480 --> 05:15:10,680 PEOPLE WILL SAY, I SHARED THIS 9510 05:15:10,680 --> 05:15:13,960 INFORMATION WITH MY COUSIN. 9511 05:15:13,960 --> 05:15:16,160 WHY DID YOU SHARE IT WITH YOUR 9512 05:15:16,160 --> 05:15:18,240 COUSIN INSTEAD OF MAYBE YOUR 9513 05:15:18,240 --> 05:15:18,760 BROTHER OR SISTER? 9514 05:15:18,760 --> 05:15:21,040 BECAUSE I'M CLOSER WITH MY 9515 05:15:21,040 --> 05:15:21,880 COUSIN. 9516 05:15:21,880 --> 05:15:22,480 SO PEOPLE ARE NOT NECESSARILY 9517 05:15:22,480 --> 05:15:23,640 CONNECTING THAT THE HIGHEST 9518 05:15:23,640 --> 05:15:25,280 PRIORITY TO SHARE GENETIC 9519 05:15:25,280 --> 05:15:27,080 RESULTS WITH ARE THOSE YOU 9520 05:15:27,080 --> 05:15:27,680 PROBABLY SHARE THE GREATEST 9521 05:15:27,680 --> 05:15:28,880 NUMBER OF GENES WITH, LIKE YOUR 9522 05:15:28,880 --> 05:15:29,760 FIRST DEGREE RELATIVES. 9523 05:15:29,760 --> 05:15:31,520 THERE ARE MANY REPORTS OF PEOPLE 9524 05:15:31,520 --> 05:15:32,520 SHARING THIS INFORMATION WITH 9525 05:15:32,520 --> 05:15:35,280 PROVIDERS, LIKE THEIR PRIMARY 9526 05:15:35,280 --> 05:15:37,440 CARE PROVIDERS AND SPECIALISTS, 9527 05:15:37,440 --> 05:15:38,960 SO THIS IS COMMON, BUT NOT 9528 05:15:38,960 --> 05:15:39,760 UNIVERSAL. 9529 05:15:39,760 --> 05:15:41,720 SO IN THE STUDIES THAT HAVE 9530 05:15:41,720 --> 05:15:42,360 EXAMINED THIS PARTICULAR 9531 05:15:42,360 --> 05:15:43,480 OUTCOME, THE RATES OF DISCLOSURE 9532 05:15:43,480 --> 05:15:45,640 TO HEALTHCARE PROFESSIONALS 9533 05:15:45,640 --> 05:15:48,520 HOVER RIGHT AROUND 65 TO 70%. 9534 05:15:48,520 --> 05:15:49,680 SO THERE'S STILL A SIGNIFICANT 9535 05:15:49,680 --> 05:15:50,680 NUMBER OF PEOPLE WHO ARE NOT 9536 05:15:50,680 --> 05:15:52,640 SHARING THEIR FINDINGS WITH 9537 05:15:52,640 --> 05:15:53,360 THEIR -- WITH A HEALTHCARE 9538 05:15:53,360 --> 05:15:56,640 PROVIDER EVEN AFTER THEY LEARN 9539 05:15:56,640 --> 05:15:56,920 THEM. 9540 05:15:56,920 --> 05:15:59,800 AND THEN THIS LAST POINT THAT I 9541 05:15:59,800 --> 05:16:03,120 WANT TO EMPHASIZE, THIS IDEA 9542 05:16:03,120 --> 05:16:04,360 THAT THE ULTIMATE GOAL OF 9543 05:16:04,360 --> 05:16:05,720 SHARING THIS INFORMATION WITH 9544 05:16:05,720 --> 05:16:08,000 PEOPLE IS SO THAT THEY CAN 9545 05:16:08,000 --> 05:16:09,840 EXPERIENCE THE CLINICAL UTILITY 9546 05:16:09,840 --> 05:16:11,960 OF HAVING THIS INFORMATION. 9547 05:16:11,960 --> 05:16:13,360 YOU KNOW, AGAIN, I THINK THERE'S 9548 05:16:13,360 --> 05:16:15,760 SOME EVIDENCE TO SUGGEST THAT 9549 05:16:15,760 --> 05:16:18,240 PEOPLE ARE FOLLOWING 9550 05:16:18,240 --> 05:16:21,360 RECOMMENDATIONS THAT THEY GET, 9551 05:16:21,360 --> 05:16:22,640 BUT THERE'S A HUGE RANGE HERE. 9552 05:16:22,640 --> 05:16:24,880 SO IN SOME STUDIES, IT WILL BE 9553 05:16:24,880 --> 05:16:26,000 JUST OVER HALF OF PEOPLE HAVE 9554 05:16:26,000 --> 05:16:27,600 FOLLOWED UP WITH A SPECIALIST 9555 05:16:27,600 --> 05:16:28,600 THEY WERE RECOMMENDED TO SEE, 9556 05:16:28,600 --> 05:16:30,720 AND THEN OTHER STUDIES, IT'S 9557 05:16:30,720 --> 05:16:31,040 MUCH HIGHER. 9558 05:16:31,040 --> 05:16:31,720 SO I THINK THAT'S SOMETHING 9559 05:16:31,720 --> 05:16:32,760 THAT'S REALLY WORTH 9560 05:16:32,760 --> 05:16:36,200 UNDERSTANDING A LITTLE BIT MORE. 9561 05:16:36,200 --> 05:16:37,160 THERE ARE LOTS OF REPORTS OF 9562 05:16:37,160 --> 05:16:38,600 PEOPLE SEEKING GENETIC 9563 05:16:38,600 --> 05:16:39,800 COUNSELING AND SPECIALIST 9564 05:16:39,800 --> 05:16:40,560 REFERRALS. 9565 05:16:40,560 --> 05:16:44,120 AND IN THE VERY FEW STUDIES THAT 9566 05:16:44,120 --> 05:16:45,280 HAVE LOOKED AT COSTS OF HOW MUCH 9567 05:16:45,280 --> 05:16:48,760 DOES IT COST THE HEALTHCARE 9568 05:16:48,760 --> 05:16:50,200 SYSTEM TO RETURN THIS HIGHLY 9569 05:16:50,200 --> 05:16:51,000 MEDICALLY RELEVANT INFORMATION 9570 05:16:51,000 --> 05:16:52,960 TO PEOPLE, THE COSTS HAVE BEEN 9571 05:16:52,960 --> 05:16:54,720 EQUIVALENT OR LOWER THAN 9572 05:16:54,720 --> 05:16:58,560 EXPECTED. 9573 05:16:58,560 --> 05:16:59,880 I THINK WHEN I LOOK AT THESE 9574 05:16:59,880 --> 05:17:01,080 DATA, I THINK THERE IS TRENDING 9575 05:17:01,080 --> 05:17:03,960 IN A POSITIVE DIRECTION, BUT 9576 05:17:03,960 --> 05:17:06,480 AGAIN, WE WERE ONLY ABLE TO FIND 9577 05:17:06,480 --> 05:17:08,640 EVIDENCE OF THESE PRECISION 9578 05:17:08,640 --> 05:17:11,120 MEDICINE OUTCOMES LIKE SOMEONE'S 9579 05:17:11,120 --> 05:17:14,000 LIFE BEING SAVED, OR THEM 9580 05:17:14,000 --> 05:17:15,640 ALTERING THEIR HEALTHCARE IN A 9581 05:17:15,640 --> 05:17:17,120 REALLY IMPACTFUL WAY IN ABOUT 3% 9582 05:17:17,120 --> 05:17:18,560 OF THE REPORTS IN THE 9583 05:17:18,560 --> 05:17:18,840 LITERATURE. 9584 05:17:18,840 --> 05:17:20,160 SO WE STILL HAVE A WAYS TO GO 9585 05:17:20,160 --> 05:17:21,800 THERE. 9586 05:17:21,800 --> 05:17:22,560 NEVERTHELESS, IN THE LITERATURE 9587 05:17:22,560 --> 05:17:26,600 YOU WILL SEE REPORTS LIKE PEOPLE 9588 05:17:26,600 --> 05:17:28,680 TAKING MEDICINE TO -- OR 9589 05:17:28,680 --> 05:17:29,800 ALTERING SOME OF THEIR 9590 05:17:29,800 --> 05:17:32,520 MEDICATION PREFERENCES TO AVOID 9591 05:17:32,520 --> 05:17:33,960 A MALIGNANT ARRHYTHMIA, PEOPLE 9592 05:17:33,960 --> 05:17:35,640 RECEIVING TARGETED THERAPY TO 9593 05:17:35,640 --> 05:17:39,000 ADDRESS GENETIC CAUSES OF HIGH 9594 05:17:39,000 --> 05:17:39,440 CHOLESTEROL, EARLY 9595 05:17:39,440 --> 05:17:41,280 IDENTIFICATION OF CANCER RISK 9596 05:17:41,280 --> 05:17:42,920 LESIONS, AND THEN PROPHYLACTIC 9597 05:17:42,920 --> 05:17:45,240 SURGERIES TO PREVENT -- OR TO 9598 05:17:45,240 --> 05:17:46,240 DRAMATICALLY REDUCE CANCER RISK. 9599 05:17:46,240 --> 05:17:47,720 SO AGAIN, THESE REPORTS DO EXIST 9600 05:17:47,720 --> 05:17:50,440 IN THE LITERATURE. 9601 05:17:50,440 --> 05:17:51,560 SO I'LL CONCLUDE BY TALKING 9602 05:17:51,560 --> 05:17:53,160 ABOUT WHAT WE CAN UNDERSTAND 9603 05:17:53,160 --> 05:17:54,960 ABOUT DATA FROM HEALTHY 9604 05:17:54,960 --> 05:17:56,720 FAMILIES, SO THESE ARE PEOPLE 9605 05:17:56,720 --> 05:17:58,800 WHO ARE MAYBE MOST ANALOGOUS TO 9606 05:17:58,800 --> 05:18:01,200 ECHO PARTICIPANTS. 9607 05:18:01,200 --> 05:18:02,720 AND AGAIN, I THINK THEY'RE 9608 05:18:02,720 --> 05:18:04,640 REALLY VERY LIMITED DATA OUT 9609 05:18:04,640 --> 05:18:06,000 THERE AND THEY'RE LARGELY 9610 05:18:06,000 --> 05:18:08,520 THEORETICAL, SO WHEN YOU SURVEY 9611 05:18:08,520 --> 05:18:09,840 PEOPLE, YOU'LL SAY WHAT KINDS OF 9612 05:18:09,840 --> 05:18:11,400 RESULTS WOULD YOU LIKE TO 9613 05:18:11,400 --> 05:18:12,080 RECEIVE? 9614 05:18:12,080 --> 05:18:13,240 AND THEN AGAIN, I THINK THIS IS 9615 05:18:13,240 --> 05:18:14,120 DIFFERENT FROM ACTUALLY 9616 05:18:14,120 --> 05:18:15,880 FOLLOWING PEOPLE WHO HAVE 9617 05:18:15,880 --> 05:18:17,520 RECEIVED THESE KINDS OF RESULTS. 9618 05:18:17,520 --> 05:18:19,600 AND THEN I THINK ANOTHER CONCERN 9619 05:18:19,600 --> 05:18:21,800 WITH SOME OF THIS LITERATURE IS 9620 05:18:21,800 --> 05:18:25,560 THAT DISTINGUISHING FINDINGS 9621 05:18:25,560 --> 05:18:26,400 THAT MIGHT BE RELATED TO THE 9622 05:18:26,400 --> 05:18:28,160 PRIMARY RESEARCH OR THAT MIGHT 9623 05:18:28,160 --> 05:18:31,200 BE DIAGNOSTIC FROM SECONDARY 9624 05:18:31,200 --> 05:18:32,720 FINDINGS IS REALLY CHALLENGING 9625 05:18:32,720 --> 05:18:33,640 IN SOME OF THIS HYPOTHETICAL 9626 05:18:33,640 --> 05:18:34,600 WORK AND FROM SOME OF THE WORK 9627 05:18:34,600 --> 05:18:37,160 THAT'S BEEN DONE. 9628 05:18:37,160 --> 05:18:39,160 SO THERE'S ONE STUDY THAT 9629 05:18:39,160 --> 05:18:41,760 INVESTIGATED IN ADOLESCENTS WHO 9630 05:18:41,760 --> 05:18:44,040 HAD THE OPPORTUNITY TO RECEIVE 9631 05:18:44,040 --> 05:18:45,880 SECONDARY GENOMIC FINDINGS FROM 9632 05:18:45,880 --> 05:18:48,680 BEING IN A RESEARCH STUDY. 9633 05:18:48,680 --> 05:18:51,600 AND MANY OF THESE RESULTS WERE 9634 05:18:51,600 --> 05:18:54,920 PHARMACOGENOMIC, SO MAYBE LESS 9635 05:18:54,920 --> 05:18:55,480 CLINICAL UTILITY THAN WHAT I 9636 05:18:55,480 --> 05:18:59,320 JUST MENTIONED, HIGHLY IMPACTFUL 9637 05:18:59,320 --> 05:18:59,840 STUDIES. 9638 05:18:59,840 --> 05:19:01,960 BUT THE ADOLESCENTS THEMSELVES 9639 05:19:01,960 --> 05:19:03,560 REPORTED SOME DEGREE OF INITIAL 9640 05:19:03,560 --> 05:19:05,200 OVERWHELM, MOSTLY DUE TO THE 9641 05:19:05,200 --> 05:19:06,800 UNFAMILIARITY THEY EXPRESSED 9642 05:19:06,800 --> 05:19:07,520 ABOUT THESE TYPES OF FINDINGS, 9643 05:19:07,520 --> 05:19:10,160 BUT LATER ON, AFTER SOME TIME 9644 05:19:10,160 --> 05:19:12,120 HAD PASSED, THEY EXPRESSED 9645 05:19:12,120 --> 05:19:15,000 THINGS LIKE GRATITUDE BECAUSE IT 9646 05:19:15,000 --> 05:19:16,280 WOULD ALLOW THEM TO THINK ABOUT 9647 05:19:16,280 --> 05:19:17,840 HOW THEY WOULD MOVE FORWARD WITH 9648 05:19:17,840 --> 05:19:19,240 SOME OF THESE FINDINGS FOR 9649 05:19:19,240 --> 05:19:20,640 FAMILY PLANNING OR WHEN I GROW 9650 05:19:20,640 --> 05:19:22,000 UP, I KNOW NOW I NEED TO HAVE 9651 05:19:22,000 --> 05:19:23,080 SCREENING FOR THIS. 9652 05:19:23,080 --> 05:19:25,640 AND ALL OF THESE ADOLESCENTS 9653 05:19:25,640 --> 05:19:27,600 REPORTED THAT WHAT WE CALL 9654 05:19:27,600 --> 05:19:29,000 ADAPTATION, SO AGAIN, AFTER THIS 9655 05:19:29,000 --> 05:19:30,720 INITIAL PERIOD OF WOW, THAT WAS 9656 05:19:30,720 --> 05:19:32,040 A LOT OF INFORMATION, WHEN YOU 9657 05:19:32,040 --> 05:19:33,520 APPROACH THEM A COUPLE MONTHS 9658 05:19:33,520 --> 05:19:35,360 LATER, THEY SAY, WELL, THIS IS 9659 05:19:35,360 --> 05:19:36,880 REALLY FINE, AND IMPORTANTLY, 9660 05:19:36,880 --> 05:19:37,720 I'M SATISFIED. 9661 05:19:37,720 --> 05:19:39,800 I DON'T HAVE DECISIONAL REGRET, 9662 05:19:39,800 --> 05:19:41,600 I'M GLAD THAT I SIGNED UP TO 9663 05:19:41,600 --> 05:19:47,120 RECEIVE THOSE KINDS OF FINDINGS. 9664 05:19:47,120 --> 05:19:50,880 CHEN WTHEN WHEN YOU ASK PARENTS, 9665 05:19:50,880 --> 05:19:52,120 PARENTS MAKING DECISIONS ABOUT 9666 05:19:52,120 --> 05:19:52,680 WHETHER OR NOT THEY SHOULD 9667 05:19:52,680 --> 05:19:53,800 RECEIVE RESULTS ON BEHALF OF 9668 05:19:53,800 --> 05:19:55,840 THEIR CHILDREN, I THINK THE KEY 9669 05:19:55,840 --> 05:20:00,120 HERE IS THAT MANY TIMES WHEN YOU 9670 05:20:00,120 --> 05:20:00,920 ASK PARENTS ABOUT GETTING 9671 05:20:00,920 --> 05:20:02,240 INFORMATION ABOUT THEIR 9672 05:20:02,240 --> 05:20:05,080 CHILDREN, THIS WHOLE DISTINCTION 9673 05:20:05,080 --> 05:20:07,080 BETWEEN WHAT'S SECONDARY AND 9674 05:20:07,080 --> 05:20:07,840 WHAT'S RELATED TO THE RESEARCH 9675 05:20:07,840 --> 05:20:09,600 AND WHAT'S CLINICALLY USEFUL AND 9676 05:20:09,600 --> 05:20:11,000 WHAT'S A PERSONAL UTILITY, JUST 9677 05:20:11,000 --> 05:20:15,200 KIND OF EE VAN WAITS BECAUSE EVY 9678 05:20:15,200 --> 05:20:16,480 JUST WANT TO KNOW MORE ABOUT 9679 05:20:16,480 --> 05:20:16,920 THEIR KIDS. 9680 05:20:16,920 --> 05:20:19,440 SOME OF THESE DISTINCTIONS WE 9681 05:20:19,440 --> 05:20:20,640 MIGHT MAKE AGAIN ARE NOT AS 9682 05:20:20,640 --> 05:20:21,440 RELEVANT TO PARENTS. 9683 05:20:21,440 --> 05:20:22,960 THEY ESSENTIALLY SAY IF IT'S 9684 05:20:22,960 --> 05:20:23,560 SOMETHING THAT COULD HELP MY 9685 05:20:23,560 --> 05:20:25,080 CHILD, PLEASE TELL ME, I'M VERY 9686 05:20:25,080 --> 05:20:25,720 INTERESTED IN LEARNING ABOUT 9687 05:20:25,720 --> 05:20:27,480 THIS, AND THIS IS, AGAIN, WHERE 9688 05:20:27,480 --> 05:20:30,560 I THINK SOME OF THE GENETIC 9689 05:20:30,560 --> 05:20:31,160 EXCEPTIONALISM EVAPORATE. 9690 05:20:31,160 --> 05:20:33,120 THEY DON'T CARE THAT IT'S 9691 05:20:33,120 --> 05:20:34,520 GENETIC, THEY JUST CARE, CAN IT 9692 05:20:34,520 --> 05:20:35,520 HELP MY CHILD. 9693 05:20:35,520 --> 05:20:40,480 AND THENL THE OUT THEN THE OUTCT 9694 05:20:40,480 --> 05:20:41,680 PARENTS EXPERIENCE AFTER 9695 05:20:41,680 --> 05:20:43,880 LEARNING THESE KINDS OF FINDINGS 9696 05:20:43,880 --> 05:20:45,440 ARE I THINK CLOSELY LINKED TO 9697 05:20:45,440 --> 05:20:46,320 THEIR LIFE EXPERIENCES, 9698 05:20:46,320 --> 05:20:47,720 DEPENDING ON KIND OF THEIR 9699 05:20:47,720 --> 05:20:49,600 PREVIOUS EXPERIENCES THEY'VE HAD 9700 05:20:49,600 --> 05:20:50,800 WITH CARING FOR A CHILD WITH 9701 05:20:50,800 --> 05:20:53,760 SPECIAL NEEDS, FOR EXAMPLE, THEY 9702 05:20:53,760 --> 05:20:55,640 JUST ARE -- THEY CITE THEIR OWN 9703 05:20:55,640 --> 05:20:57,240 LIFE EXPERIENCE AND THEY THINK 9704 05:20:57,240 --> 05:20:58,160 ABOUT WHY THEY MIGHT WANT TO 9705 05:20:58,160 --> 05:21:01,880 LEARN MORE INFORMATION. 9706 05:21:01,880 --> 05:21:03,960 THEN THIS ONE STUDY DID LOOK AT 9707 05:21:03,960 --> 05:21:05,960 RECESSIVE AND CARRIER RESULTS IN 9708 05:21:05,960 --> 05:21:07,600 A LARGE POPULATION OF HEALTHY 9709 05:21:07,600 --> 05:21:09,240 PEOPLE. 9710 05:21:09,240 --> 05:21:11,160 AND I THINK THE KEY FINDING TO 9711 05:21:11,160 --> 05:21:14,400 POINT OUT HERE IS THAT OVERALL, 9712 05:21:14,400 --> 05:21:15,280 PEOPLE WERE VERY SATISFIED THAT 9713 05:21:15,280 --> 05:21:17,120 THEY OPTED IN TO LEARN THESE 9714 05:21:17,120 --> 05:21:19,640 RECESSIVE RESULTS. 9715 05:21:19,640 --> 05:21:21,240 BUT THE PEOPLE WHO EXPERIENCED 9716 05:21:21,240 --> 05:21:22,960 SOME LEVEL OF DISCOMFORT IN THIS 9717 05:21:22,960 --> 05:21:24,600 STUDY TENDED TO BE THE ONES WHO 9718 05:21:24,600 --> 05:21:27,440 WERE GRANDPARENTS BECAUSE THEY 9719 05:21:27,440 --> 05:21:28,160 WERE CONCERNED ABOUT THEIR 9720 05:21:28,160 --> 05:21:28,760 GRANDCHILDREN BEING AFFECTED 9721 05:21:28,760 --> 05:21:33,360 WITH A PARTICULAR GENETIC 9722 05:21:33,360 --> 05:21:33,680 DISEASE. 9723 05:21:33,680 --> 05:21:38,840 SO IN CONCLUSION, I THINK 9724 05:21:38,840 --> 05:21:40,800 GENOMIC INTERROGATION IS 9725 05:21:40,800 --> 05:21:41,800 CERTAINLY BECOMING MORE COMMON 9726 05:21:41,800 --> 05:21:45,240 IN RESEARCH STUDIES OF ALL KINDS 9727 05:21:45,240 --> 05:21:47,080 AND AS MANY HAVE MENTIONED HERE, 9728 05:21:47,080 --> 05:21:47,960 ROBUST CONSENT PROCEDURES ARE 9729 05:21:47,960 --> 05:21:49,960 REALLY NEEDED TO SPELL OUT WHAT 9730 05:21:49,960 --> 05:21:50,840 THE ARRAY OF CHOICES -- OR WHAT 9731 05:21:50,840 --> 05:21:52,800 THE ARRAY OF RESULTS ARE THAT 9732 05:21:52,800 --> 05:21:54,880 MAY BE IN THE BALLPARK TO BE 9733 05:21:54,880 --> 05:21:57,040 RETURNED TO PEOPLE TO 9734 05:21:57,040 --> 05:21:58,640 PARTICIPANTS AND THE TIMELINE 9735 05:21:58,640 --> 05:22:02,680 UNDER WHICH YOU WOULD DO THAT. 9736 05:22:02,680 --> 05:22:03,800 CERTAINLY AS OTHERS HAVE 9737 05:22:03,800 --> 05:22:05,160 MENTIONED, PLANNING AHEAD TO 9738 05:22:05,160 --> 05:22:06,080 THINK ABOUT HOW YOU CAN 9739 05:22:06,080 --> 05:22:06,880 PROSPECTIVELY BUILD IN 9740 05:22:06,880 --> 05:22:08,400 PROCEDURES KIND OF LIKE, AGAIN, 9741 05:22:08,400 --> 05:22:10,080 WHAT BEN MENTIONED, A 9742 05:22:10,080 --> 05:22:12,360 CENTRALIZED RESOURCE TO RETURN 9743 05:22:12,360 --> 05:22:13,920 THESE KINDS OF FINDINGS TO 9744 05:22:13,920 --> 05:22:14,320 PEOPLE. 9745 05:22:14,320 --> 05:22:17,240 I'M PART OF A CENTRALIZED 9746 05:22:17,240 --> 05:22:18,320 RESOURCE LIKE THAT. 9747 05:22:18,320 --> 05:22:20,160 I THINK IS LIKELY TO BE 9748 05:22:20,160 --> 05:22:21,160 BENEFICIAL WHEN DESIGNING THESE 9749 05:22:21,160 --> 05:22:23,960 KINDS OF STUDIES. 9750 05:22:23,960 --> 05:22:26,200 SO I HAVE MY ACKNOWLEDGMENTS 9751 05:22:26,200 --> 05:22:27,160 HERE AND IMPORTANTLY I CITED A 9752 05:22:27,160 --> 05:22:28,760 LOT OF LITERATURE AND THERE'S 9753 05:22:28,760 --> 05:22:30,520 THE LINK TO THE LIBRARY FOR 9754 05:22:30,520 --> 05:22:36,240 THAT. 9755 05:22:36,240 --> 05:22:37,400 SO THANK YOU. 9756 05:22:37,400 --> 05:22:38,520 >>THANK YOU, JULIE. 9757 05:22:38,520 --> 05:22:44,560 QUESTIONS? 9758 05:22:44,560 --> 05:22:44,840 JEFF. 9759 05:22:44,840 --> 05:22:47,000 >>THANKS SO MUCH FOR THIS. 9760 05:22:47,000 --> 05:22:50,600 WONDERING WHAT YOU MAKE OF A 9761 05:22:50,600 --> 05:22:52,280 SLIGHTLY DIFFERENT CONTEXT WHERE 9762 05:22:52,280 --> 05:22:54,000 THE OUTCOMES, I THINK MAY BE 9763 05:22:54,000 --> 05:22:54,440 MARKEDLY DIFFERENT. 9764 05:22:54,440 --> 05:22:56,040 SO YOU'RE DEALING WITH THINGS 9765 05:22:56,040 --> 05:22:58,960 LIKE SAY BRCA1, SIGNIFICANTLY 9766 05:22:58,960 --> 05:23:00,960 IMPACT CONDITIONS WITH AND 9767 05:23:00,960 --> 05:23:02,120 FINDING THE HIGH PERCENTAGE OF 9768 05:23:02,120 --> 05:23:04,720 PEOPLE WHO ACTUALLY WANT THAT 9769 05:23:04,720 --> 05:23:05,120 INFORMATION BACK. 9770 05:23:05,120 --> 05:23:06,320 BUT IF YOU LOOK AT FAMILIES IN 9771 05:23:06,320 --> 05:23:09,640 WHICH THERE'S A KNOWN BRCA1 9772 05:23:09,640 --> 05:23:11,920 MUTATION, AND PEOPLE ARE AT 50% 9773 05:23:11,920 --> 05:23:13,880 RISK, MY KNOWLEDGE OF THE 9774 05:23:13,880 --> 05:23:15,760 NUMBERS IS LARGE PROPORTIONS OF 9775 05:23:15,760 --> 05:23:17,360 THOSE PEOPLE DON'T WANT TESTING. 9776 05:23:17,360 --> 05:23:17,960 LIKE 50%. 9777 05:23:17,960 --> 05:23:20,040 AND I THINK IT'S ALSO TRUE FOR 9778 05:23:20,040 --> 05:23:22,800 THINGS LIKE HUNTINGTON'S, WHERE 9779 05:23:22,800 --> 05:23:24,760 80% OF PEOPLE DON'T WANT TO KNOW 9780 05:23:24,760 --> 05:23:25,880 THAT INFORMATION. 9781 05:23:25,880 --> 05:23:27,600 I WONDER WHAT YOU MAKE OF THAT 9782 05:23:27,600 --> 05:23:30,200 CONTRAST AND THOSE TWO SCENARIOS 9783 05:23:30,200 --> 05:23:32,800 OF TESTING KIND OF FOR THE SAME 9784 05:23:32,800 --> 05:23:34,000 THING BUT A LITTLE DIFFERENT 9785 05:23:34,000 --> 05:23:34,280 BACKGROUND. 9786 05:23:34,280 --> 05:23:37,600 >>SO I THINK THE DATA ON UPTAKE 9787 05:23:37,600 --> 05:23:40,120 OF DIAGNOSTIC TESTING AND AT 9788 05:23:40,120 --> 05:23:42,840 RISK FAMILIES, LIKE YOU SAID, IT 9789 05:23:42,840 --> 05:23:43,680 CAN BE ALL OVER THE PLACE AND I 9790 05:23:43,680 --> 05:23:45,680 THINK IT'S HIGHLY 9791 05:23:45,680 --> 05:23:47,480 POPULATION-DEPENDENT AS WELL AND 9792 05:23:47,480 --> 05:23:48,920 DISEASE-DEPENDENT AS WELL, SO I 9793 05:23:48,920 --> 05:23:50,840 THINK THAT THERE ARE -- IF YOU 9794 05:23:50,840 --> 05:23:52,280 LOOK AT RATES OF CASCADE TESTING 9795 05:23:52,280 --> 05:23:57,320 IN RELATIVES, YOU CAN FIND 9796 05:23:57,320 --> 05:23:58,520 STUDIES IN POPULATIONS WHERE 9797 05:23:58,520 --> 05:24:02,200 THERE'S AN 80, 90% UPTAKE RATE 9798 05:24:02,200 --> 05:24:07,200 OF CASCADE TESTING AMONG 9799 05:24:07,200 --> 05:24:08,720 RELATIVES, IN BRCA1 AND 2 WE 9800 05:24:08,720 --> 05:24:10,440 HAVE MUCH HIGHER UPTAKE AMONG 9801 05:24:10,440 --> 05:24:16,080 WOMEN, EVEN THOUGH ME -- MALE OF 9802 05:24:16,080 --> 05:24:17,200 CARRIERS ARE AT THE SAME RISK AS 9803 05:24:17,200 --> 05:24:18,280 WELL. 9804 05:24:18,280 --> 05:24:21,760 I THINK THAT ANOTHER KEY POINT 9805 05:24:21,760 --> 05:24:23,080 HERE IS THAT PEOPLE WHO ARE 9806 05:24:23,080 --> 05:24:26,600 MAKING DECISIONS TO UNDERGO 9807 05:24:26,600 --> 05:24:27,560 PREDICTIVE GENETIC TESTING IN 9808 05:24:27,560 --> 05:24:29,200 THE CONTEXT OF A KNOWN CONDITION 9809 05:24:29,200 --> 05:24:32,800 IN A FAMILY HAVE A VERY 9810 05:24:32,800 --> 05:24:34,920 DIFFERENT LIVED EXPERIENCE FROM 9811 05:24:34,920 --> 05:24:36,880 PEOPLE WHO MIGHT BE ASKED TO GET 9812 05:24:36,880 --> 05:24:39,520 KIND OF A HEADS UP ABOUT A 9813 05:24:39,520 --> 05:24:41,000 PREVENTABLE HEALTH RISK WITH 9814 05:24:41,000 --> 05:24:42,320 WHICH THEY HAVE NO PERSONAL 9815 05:24:42,320 --> 05:24:44,920 LIVED EXPERIENCE. 9816 05:24:44,920 --> 05:24:46,680 SO I THINK ON THE ONE HAND, IT'S 9817 05:24:46,680 --> 05:24:49,440 A FAR MORE NEBULOUS CHOICE TO 9818 05:24:49,440 --> 05:24:53,160 ASK PEOPLE, YOU KNOW, AS BEN WAS 9819 05:24:53,160 --> 05:24:54,280 MENTIONING WHEN YOU THINK ABOUT 9820 05:24:54,280 --> 05:24:55,920 CONSENTING PEOPLE, YOU CAN GO 9821 05:24:55,920 --> 05:24:58,440 INTO ALL THIS DETAIL ABOUT 9822 05:24:58,440 --> 05:25:01,640 HERE'S THE MENU OF RESULTS WHICH 9823 05:25:01,640 --> 05:25:06,560 YOU MIGHT RECEIVE, BUT I THINK 9824 05:25:06,560 --> 05:25:08,200 PEOPLE STILL ANCHOR THAT SO MUCH 9825 05:25:08,200 --> 05:25:08,880 IN THEIR PERSONAL EXPERIENCE AND 9826 05:25:08,880 --> 05:25:10,280 IF THEY DON'T HAVE PERSONAL 9827 05:25:10,280 --> 05:25:12,040 EXPERIENCE WITH THAT SPECIFIC 9828 05:25:12,040 --> 05:25:15,320 CONDITION OR THEY'RE NOT LINKING 9829 05:25:15,320 --> 05:25:17,000 TO THIS IDEA OF HEREDITY WHICH I 9830 05:25:17,000 --> 05:25:18,120 HEAR FROM PEOPLE ALL THE TIME, I 9831 05:25:18,120 --> 05:25:21,440 HEAR THIS ALL THE TIME, I KNEW 9832 05:25:21,440 --> 05:25:22,080 THAT -- I KNOW EVERYONE IN MY 9833 05:25:22,080 --> 05:25:23,720 FAMILY HAS HEART ATTACKS AND HAS 9834 05:25:23,720 --> 05:25:25,080 HIGH CHOLESTEROL, BUT I HAD NO 9835 05:25:25,080 --> 05:25:26,760 IDEA THERE WAS A GENE FOR THAT, 9836 05:25:26,760 --> 05:25:28,600 OR I HAD NO IDEA THAT WAS 9837 05:25:28,600 --> 05:25:29,560 GENETIC. 9838 05:25:29,560 --> 05:25:32,200 AND I THINK THERE'S A -- I THINK 9839 05:25:32,200 --> 05:25:35,560 PEOPLE STILL KIND OF HARKEN BACK 9840 05:25:35,560 --> 05:25:36,520 TO THEIR PERSONAL EXPERIENCE AND 9841 05:25:36,520 --> 05:25:40,920 THAT IS SOMETHING THAT IS 9842 05:25:40,920 --> 05:25:42,600 UNAVOIDABLE IN MANY, MANY WAYS. 9843 05:25:42,600 --> 05:25:46,480 AND IF YOU ASK PEOPLE, WOULD YOU 9844 05:25:46,480 --> 05:25:47,960 LIKE THE HEADS UP -- WHEN I WORK 9845 05:25:47,960 --> 05:25:49,600 WITH RESEARCH PARTICIPANTS, I 9846 05:25:49,600 --> 05:25:50,520 TYPICALLY PITCH THIS AS, YOU 9847 05:25:50,520 --> 05:25:51,960 KNOW, I MIGHT FIND OUT SOMETHING 9848 05:25:51,960 --> 05:25:54,360 ABOUT YOU THAT COULD -- THAT 9849 05:25:54,360 --> 05:25:55,840 WOULD MAKE ME GIVE YOU SOME 9850 05:25:55,840 --> 05:25:56,840 RECOMMENDATIONS FOR HOW TO 9851 05:25:56,840 --> 05:25:59,520 CHANGE YOUR HEALTHCARE TO, YOU 9852 05:25:59,520 --> 05:26:01,360 KNOW, OPTIMIZE YOUR OUTCOMES. 9853 05:26:01,360 --> 05:26:02,000 I WOULD LIKE TO SHARE THAT WITH 9854 05:26:02,000 --> 05:26:03,480 YOU BECAUSE IT MAKES ME VERY 9855 05:26:03,480 --> 05:26:04,200 UNCOMFORTABLE TO KNOW SOMETHING 9856 05:26:04,200 --> 05:26:06,080 LIKE THAT ABOUT YOU WITHOUT 9857 05:26:06,080 --> 05:26:07,200 SHARING IT WITH YOU, AND PEOPLE 9858 05:26:07,200 --> 05:26:10,720 ARE VERY QUICK TO ENDORSE THAT 9859 05:26:10,720 --> 05:26:11,040 STATEMENT. 9860 05:26:11,040 --> 05:26:12,680 BUT THEY'RE PROBABLY THINKING 9861 05:26:12,680 --> 05:26:13,320 ABOUT THINGS THAT THEY PERCEIVE 9862 05:26:13,320 --> 05:26:14,760 OF AS BEING GENETIC THAT MIGHT 9863 05:26:14,760 --> 05:26:16,200 BE TOTALLY DIFFERENT FROM WHAT'S 9864 05:26:16,200 --> 05:26:24,200 ON THE TABLE HERE. 9865 05:26:24,200 --> 05:26:26,440 >>QUICK QUESTION. 9866 05:26:26,440 --> 05:26:27,640 I'M FROM -- THE ECHO PROGRAM, 9867 05:26:27,640 --> 05:26:31,800 THANK YOU FOR A NICE TALK. 9868 05:26:31,800 --> 05:26:32,560 THERE ARE SOME CULTURAL 9869 05:26:32,560 --> 05:26:33,680 DIFFERENCES, ESPECIALLY I KNOW 9870 05:26:33,680 --> 05:26:36,680 BEING FROM INDIA, EVEN A VERY 9871 05:26:36,680 --> 05:26:39,440 SERIOUS DISEASE OF A PATIENT, 9872 05:26:39,440 --> 05:26:40,560 FAMILY MEMBERS DON'T WANT TO 9873 05:26:40,560 --> 05:26:42,000 EVEN TELL THEM WHEN THE 9874 05:26:42,000 --> 05:26:46,360 DIAGNOSIS COMES FROM THE DOCTOR, 9875 05:26:46,360 --> 05:26:47,800 ABOUT A LETHAL DISEASE, HE MAY 9876 05:26:47,800 --> 05:26:49,240 HAVE ONLY A MONTH MORE, WHY 9877 05:26:49,240 --> 05:26:50,640 SHOULD WE SPOIL HIS REMAINING 9878 05:26:50,640 --> 05:26:53,400 DAYS IN THIS WORLD? 9879 05:26:53,400 --> 05:26:54,400 ARE THERE ANY ETHNIC DIFFERENCES 9880 05:26:54,400 --> 05:26:58,240 IN THE WAY THAT THEY DON'T WANT 9881 05:26:58,240 --> 05:27:00,080 TO ACCEPT THESE GENETIC 9882 05:27:00,080 --> 05:27:01,600 FINDINGS, AND THEN ARE THERE 9883 05:27:01,600 --> 05:27:03,840 DIFFERENCES IN THE AGE OF THE 9884 05:27:03,840 --> 05:27:06,480 RECIPIENT, YOU KNOW, YOUNGER 9885 05:27:06,480 --> 05:27:08,360 VERSUS OLDER PEOPLE? 9886 05:27:08,360 --> 05:27:10,680 >>UNDOUBTEDLY THOSE KINDS OF 9887 05:27:10,680 --> 05:27:12,680 EFFECTS ARE REALLY IMPORTANT. 9888 05:27:12,680 --> 05:27:16,040 I THINK WITH RESPECT TO 9889 05:27:16,040 --> 05:27:17,680 SPECIFICALLY THIS QUESTION ABOUT 9890 05:27:17,680 --> 05:27:18,280 SECRET KEEPING AND PEOPLE NOT 9891 05:27:18,280 --> 05:27:21,520 HAVING A LOT OF POTENTIALLY 9892 05:27:21,520 --> 05:27:22,680 GREAT OR ACCURATE HEALTH 9893 05:27:22,680 --> 05:27:27,160 INFORMATION ABOUT THEIR 9894 05:27:27,160 --> 05:27:28,160 RELATIVES, POTENTIALLY DUE TO 9895 05:27:28,160 --> 05:27:29,640 CULTURAL OR DISTANCE 9896 05:27:29,640 --> 05:27:30,800 CONSIDERATIONS OR LANGUAGE 9897 05:27:30,800 --> 05:27:31,520 CONSIDERATIONS LIKE THAT, I 9898 05:27:31,520 --> 05:27:33,640 THINK THAT'S OFTEN USED AS A 9899 05:27:33,640 --> 05:27:34,520 POTENTIAL JUST TI FIGURES OR 9900 05:27:34,520 --> 05:27:36,040 BENEFIT OF SHARING THIS KIND OF 9901 05:27:36,040 --> 05:27:36,920 INFORMATION WITH PEOPLE BECAUSE 9902 05:27:36,920 --> 05:27:39,360 WE CAN'T NECESSARILY MAKE THE 9903 05:27:39,360 --> 05:27:40,280 ASSUMPTION THAT YOU KNOW 9904 05:27:40,280 --> 05:27:41,240 EVERYTHING ABOUT YOUR FAMILY'S 9905 05:27:41,240 --> 05:27:43,600 HEALTH HISTORY AND THAT THE 9906 05:27:43,600 --> 05:27:44,240 HEALTH HISTORY THAT YOU REPORT 9907 05:27:44,240 --> 05:27:47,800 MAYBE TO YOUR PRI PRIMARY CARE 9908 05:27:47,800 --> 05:27:49,680 PHYSICIAN MAY NOT BE ACCURATE IN 9909 05:27:49,680 --> 05:27:50,240 INNUMERABLE WAYS. 9910 05:27:50,240 --> 05:27:52,880 BUT I THINK CULTURAL AND 9911 05:27:52,880 --> 05:27:55,360 ATTITUDE -- I THINK THERE'S SO 9912 05:27:55,360 --> 05:27:56,760 MANY -- HUMANS ARE VERY, VERY 9913 05:27:56,760 --> 05:27:59,400 COMPLEX AND WE ABSOLUTELY KNOW 9914 05:27:59,400 --> 05:28:01,480 ABOUT LOTS AND LOTS OF FACTORS 9915 05:28:01,480 --> 05:28:02,000 THAT INFLUENCE HOW PEOPLE 9916 05:28:02,000 --> 05:28:02,520 APPROACH THIS KIND OF 9917 05:28:02,520 --> 05:28:03,480 INFORMATION AND HOW THEY VIEW 9918 05:28:03,480 --> 05:28:05,880 IT, HOW THEY CENTER IT IN 9919 05:28:05,880 --> 05:28:07,480 RELATIONSHIP WITH THEMSELVES AS 9920 05:28:07,480 --> 05:28:08,440 AN INDIVIDUAL BUT WITH 9921 05:28:08,440 --> 05:28:11,120 THEMSELVES AS PART OF, YOU KNOW, 9922 05:28:11,120 --> 05:28:12,040 DIFFERENT -- A COMMUNITY AS WELL 9923 05:28:12,040 --> 05:28:13,040 FOR SURE. 9924 05:28:13,040 --> 05:28:21,120 >>THANK YOU. 9925 05:28:21,120 --> 05:28:23,320 >>I'M JUST WONDERING, ADAM USED 9926 05:28:23,320 --> 05:28:26,320 THE TERM TODAY "ENVIRONMENTAL 9927 05:28:26,320 --> 05:28:27,760 COUNSELOR," AND I'M WONDERING AS 9928 05:28:27,760 --> 05:28:28,560 A GENETIC COUNSELOR WHAT YOU 9929 05:28:28,560 --> 05:28:30,600 THINK OF THIS TERM AND IDEA. 9930 05:28:30,600 --> 05:28:32,560 >>YOU KNOW, I WROTE THAT DOWN, 9931 05:28:32,560 --> 05:28:34,000 AND I PUT QUESTION MARK AFTER IT 9932 05:28:34,000 --> 05:28:36,320 BECAUSE I THINK IT'S A REALLY 9933 05:28:36,320 --> 05:28:38,840 INTERESTING AND PROVOCATIVE 9934 05:28:38,840 --> 05:28:39,280 IDEA. 9935 05:28:39,280 --> 05:28:41,120 I ADMIT TO BE COMPLETELY 9936 05:28:41,120 --> 05:28:42,440 TRANSPARENT, MY FIRST THOUGHT 9937 05:28:42,440 --> 05:28:44,240 HERE WAS, WELL, COULDN'T THE 9938 05:28:44,240 --> 05:28:46,520 PRIMARY CARE PROVIDER DO SOME OF 9939 05:28:46,520 --> 05:28:46,880 THAT? 9940 05:28:46,880 --> 05:28:48,640 AND THEN I RECOGNIZED HOW ABSURD 9941 05:28:48,640 --> 05:28:50,440 THAT IS, BECAUSE MY WHOLE 9942 05:28:50,440 --> 05:28:52,840 PROFESSION, I THINK EXISTS 9943 05:28:52,840 --> 05:28:55,880 LARGELY BECAUSE THE PRIMARY CARE 9944 05:28:55,880 --> 05:28:57,080 PROVIDER CAN'T, DOESN'T, DOESN'T 9945 05:28:57,080 --> 05:28:59,320 HAVE THE TIME, THERE'S SO MANY 9946 05:28:59,320 --> 05:29:00,640 INDIVIDUAL AND SYSTEMIC BARRIERS 9947 05:29:00,640 --> 05:29:01,040 TO THAT. 9948 05:29:01,040 --> 05:29:03,200 SO I MEAN, I THINK THAT'S REALLY 9949 05:29:03,200 --> 05:29:04,560 INTERESTING, AND I WONDER ABOUT 9950 05:29:04,560 --> 05:29:05,600 THE DEGREE TO WHICH SOMEONE WITH 9951 05:29:05,600 --> 05:29:10,160 THAT KIND OF EXPERTISE MIGHT 9952 05:29:10,160 --> 05:29:12,000 BECOME EVEN MORE IMPORTANT IN 9953 05:29:12,000 --> 05:29:14,040 THIS AGE OF WHERE WE ARE 9954 05:29:14,040 --> 05:29:15,240 MEASURING SO MANY THINGS ABOUT 9955 05:29:15,240 --> 05:29:16,440 OURSELVES AND DRAWING LOTS OF 9956 05:29:16,440 --> 05:29:19,240 CONCLUSIONS ABOUT OURSELVES, 9957 05:29:19,240 --> 05:29:20,320 BECAUSE PEOPLE ARE BEING 9958 05:29:20,320 --> 05:29:22,400 MARKETED TO, TO LEARN ABOUT ALL 9959 05:29:22,400 --> 05:29:23,280 OF THESE THINGS, RIGHT? 9960 05:29:23,280 --> 05:29:26,400 SO YOU CAN COMPILE THESE HOME 9961 05:29:26,400 --> 05:29:27,800 TESTS NOT JUST OF YOUR GENES 9962 05:29:27,800 --> 05:29:30,720 BUT, YOU KNOW, OF YOUR -- TO 9963 05:29:30,720 --> 05:29:32,320 MEASURE YOUR AIR QUALITY AND 9964 05:29:32,320 --> 05:29:32,720 THINGS LIKE THAT. 9965 05:29:32,720 --> 05:29:34,200 SO I THINK THAT MAYBE WHAT WE'RE 9966 05:29:34,200 --> 05:29:37,960 REALLY TALKING ABOUT HERE IS 9967 05:29:37,960 --> 05:29:41,320 THAT THERE'S JUST SOME EXPERTISE 9968 05:29:41,320 --> 05:29:42,240 AND NAVIGATION THAT'S JUST 9969 05:29:42,240 --> 05:29:44,320 LACKING FOR PEOPLE TO MAKE SENSE 9970 05:29:44,320 --> 05:29:46,840 OF HEALTH INFORMATION GENERAL 9971 05:29:46,840 --> 05:29:53,520 LITTLE. 9972 05:29:53,520 --> 05:29:55,280 >>THANK YOU, JULIE. 9973 05:29:55,280 --> 05:30:01,240 NEXT WE'LL HEAR FROM RACHEL. 9974 05:30:01,240 --> 05:30:02,240 >>HELLO, EVERYBODY. 9975 05:30:02,240 --> 05:30:03,400 THANK YOU FOR STICKING WITH IT. 9976 05:30:03,400 --> 05:30:04,640 TODAY I WANT TO TALK TO YOU A 9977 05:30:04,640 --> 05:30:08,840 LITTLE BIT ABOUT OUR EXPERIENCE 9978 05:30:08,840 --> 05:30:09,840 WITHIN ECHO IN TERMS OF TRYING 9979 05:30:09,840 --> 05:30:13,760 TO DEVELOP A POLICY FOR RESULTS 9980 05:30:13,760 --> 05:30:14,760 RETURN, AND THEN SOME OF THE 9981 05:30:14,760 --> 05:30:16,520 LESSONS LEARNED FROM THAT GOING 9982 05:30:16,520 --> 05:30:18,840 FORWARD AS ECHO THINKS ABOUT 9983 05:30:18,840 --> 05:30:19,480 DEVELOPING AND BUILDING UPON 9984 05:30:19,480 --> 05:30:21,920 THIS EARLY WORK OF OURS. 9985 05:30:21,920 --> 05:30:24,400 SO AS WE'VE TALKED ABOUT, 9986 05:30:24,400 --> 05:30:26,560 THERE'S A LOT OF MOTIVATION FOR 9987 05:30:26,560 --> 05:30:27,640 RESULTS RETURN ON THE PART OF 9988 05:30:27,640 --> 05:30:28,960 RESEARCHERS TO BETTER ENGAGE 9989 05:30:28,960 --> 05:30:30,360 STUDY PARTICIPANTS IN WAYS THAT 9990 05:30:30,360 --> 05:30:34,040 CAN DO THINGS LIKE IMPROVE 9991 05:30:34,040 --> 05:30:34,840 RETENTION, STRENGTHEN RESEARCH 9992 05:30:34,840 --> 05:30:35,800 ETHICS AND THEN THERE'S 9993 05:30:35,800 --> 05:30:37,240 OBVIOUSLY PARTICIPANT DESIRE TO 9994 05:30:37,240 --> 05:30:38,800 GET THEIR RESULTS AND I THINK WE 9995 05:30:38,800 --> 05:30:40,760 MADE CLEAR THAT DESPITE THOSE 9996 05:30:40,760 --> 05:30:41,720 UNCERTAINTIES, PEOPLE ARE 9997 05:30:41,720 --> 05:30:42,720 INTERESTED IN THE INFORMATION 9998 05:30:42,720 --> 05:30:45,880 FOR VARIOUS REASONS. 9999 05:30:45,880 --> 05:30:46,880 AND THERE'S MOUNTING CONSENSUS 10000 05:30:46,880 --> 05:30:48,680 AMONG RESEARCHERS, AND I WOULD 10001 05:30:48,680 --> 05:30:50,840 ARGUE ALSO MANY IRBs ABOUT THE 10002 05:30:50,840 --> 05:30:52,360 BENEFITS OF SHARING SCIENTIFIC 10003 05:30:52,360 --> 05:30:54,640 INFORMATION TO IMPROVE PUBLIC 10004 05:30:54,640 --> 05:30:57,400 HEALTH AND ENVIRONMENTAL HEALTH 10005 05:30:57,400 --> 05:31:00,240 LITERACY AMONG PARTICIPANTS. 10006 05:31:00,240 --> 05:31:01,920 SO THIS WAS DISCUSSED EARLIER 10007 05:31:01,920 --> 05:31:03,040 BUT I THINK A LOT OF US HAVE 10008 05:31:03,040 --> 05:31:05,120 BEEN TAKING OUR LEADS FROM THE 10009 05:31:05,120 --> 05:31:07,640 NATIONAL ACADEMY'S REPORT IN 10010 05:31:07,640 --> 05:31:10,920 THAT RETURNING RESULTS CAN 10011 05:31:10,920 --> 05:31:12,600 DEMONSTRATE RESPECT FOR 10012 05:31:12,600 --> 05:31:13,280 PARTICIPANTS, IMPROVE 10013 05:31:13,280 --> 05:31:14,480 TRANSPARENCY ABOUT THE RESEARCH 10014 05:31:14,480 --> 05:31:16,600 ENTERPRISE AND TRUST, BENEFITS 10015 05:31:16,600 --> 05:31:19,760 PARTICIPANTS AND ALSO I WOULD 10016 05:31:19,760 --> 05:31:20,760 ARGUE AND THE REPORT STATES THAT 10017 05:31:20,760 --> 05:31:24,560 ALSO BENEFIT INVESTIGATORS. 10018 05:31:24,560 --> 05:31:26,640 SO ECHO RETURN OF RESULTS TASK 10019 05:31:26,640 --> 05:31:29,880 FORCE DEVELOPED IN PART BECAUSE 10020 05:31:29,880 --> 05:31:31,320 THERE WAS -- THERE ARE COHORT 10021 05:31:31,320 --> 05:31:32,920 WITHIN ECHO THAT HAVE BEEN DOING 10022 05:31:32,920 --> 05:31:34,680 REPORTBACK AND MANY OF THEM ARE 10023 05:31:34,680 --> 05:31:35,840 IN THIS ROOM AND UNDERGOING -- 10024 05:31:35,840 --> 05:31:38,360 HAVE PRESENTED OR WILL PRESENT, 10025 05:31:38,360 --> 05:31:41,640 WHO HAVE DONE REPORTBACK A LOT 10026 05:31:41,640 --> 05:31:43,080 FOR ENVIRONMENTAL HEALTH 10027 05:31:43,080 --> 05:31:45,520 EXPOSURES IN BIOMONITORRING AND 10028 05:31:45,520 --> 05:31:48,120 OTHER MEDIA. 10029 05:31:48,120 --> 05:31:50,440 AND SO THERE WAS MOUNT 10030 05:31:50,440 --> 05:31:52,680 INTERESTING IN WHAT WOULD IT 10031 05:31:52,680 --> 05:31:53,480 TAKE AND WHAT SHOULD ECHO'S 10032 05:31:53,480 --> 05:31:56,800 POLICY BE ABOUT REPORTBACK OR 10033 05:31:56,800 --> 05:31:58,280 RESULTS RETURN, AND WHAT 10034 05:31:58,280 --> 05:32:00,320 ELEMENTS OF WHAT THE DIFFERENT 10035 05:32:00,320 --> 05:32:01,280 PROTOCOLS AND DATA BEING 10036 05:32:01,280 --> 05:32:04,480 COLLECTED WITHIN ECHO SHOULD 10037 05:32:04,480 --> 05:32:05,800 POTENTIALLY BE CONSIDERED FOR 10038 05:32:05,800 --> 05:32:07,040 REPORTBACK. 10039 05:32:07,040 --> 05:32:07,680 SO OUR CHARGE WAS BASICALLY TO 10040 05:32:07,680 --> 05:32:10,120 DEVELOP POLICIES AND PROCESSES 10041 05:32:10,120 --> 05:32:12,160 FOR RETURNING ECHO RESULTS TO 10042 05:32:12,160 --> 05:32:12,800 INDIVIDUAL PARTICIPANTS. 10043 05:32:12,800 --> 05:32:13,840 VERY STRAIGHTFORWARD SENTENCE. 10044 05:32:13,840 --> 05:32:16,400 A LITTLE MORE COMPLICATED TO 10045 05:32:16,400 --> 05:32:18,680 IMPLEMENT. 10046 05:32:18,680 --> 05:32:22,440 SO WE EMERGED WITH SORT OF 10047 05:32:22,440 --> 05:32:23,320 GUIDING PRINCIPLES FOR HOW WE 10048 05:32:23,320 --> 05:32:24,440 WERE GOING TO ENGAGE 10049 05:32:24,440 --> 05:32:26,720 PARTICIPANTS OR FAMILIES, 10050 05:32:26,720 --> 05:32:28,320 COMMUNITIES IN THE PROCESS OF 10051 05:32:28,320 --> 05:32:29,280 RESULTS RETURN, AND THESE WERE 10052 05:32:29,280 --> 05:32:30,560 KIND OF THE BASIC PRINCIPLES 10053 05:32:30,560 --> 05:32:33,920 THAT DPIGUIDED OUR THINKING. 10054 05:32:33,920 --> 05:32:37,120 SO RECOGNITION OF PARTICIPANTS' 10055 05:32:37,120 --> 05:32:38,720 CONTRIBUTIONS TO RESEARCH 10056 05:32:38,720 --> 05:32:39,880 DESIGN, CONDUCT, OVERSIGHT AND 10057 05:32:39,880 --> 05:32:40,720 DISSEMINATION AND THAT WE WANT 10058 05:32:40,720 --> 05:32:42,880 TO DO THAT ENGAGEMENT AS MUCH AS 10059 05:32:42,880 --> 05:32:43,520 POSSIBLE. 10060 05:32:43,520 --> 05:32:44,360 PARTICIPANTS, WE ARE NOT JUST 10061 05:32:44,360 --> 05:32:47,640 SORT OF INDIVIDUAL ATOMS HERE 10062 05:32:47,640 --> 05:32:50,080 AND INFORMATION RECEPTACLES, AS 10063 05:32:50,080 --> 05:32:52,000 MONICA STATED, BUT ARE EMBEDDED 10064 05:32:52,000 --> 05:32:53,160 IN FAMILIES AND COMMUNITIES, SO 10065 05:32:53,160 --> 05:32:55,080 WE NEED TO BE THINKING ABOUT 10066 05:32:55,080 --> 05:32:57,560 THAT WHEN WE'RE ENGAGING THEM. 10067 05:32:57,560 --> 05:32:59,200 AND THERE SHOULD BE SUPPORT FOR 10068 05:32:59,200 --> 05:33:00,680 INVESTIGATORS IN BUILDING 10069 05:33:00,680 --> 05:33:02,560 INTERNAL AND COMMUNITY CAPACITY 10070 05:33:02,560 --> 05:33:04,560 TO ENHANCE THEIR ENGAGEMENT WITH 10071 05:33:04,560 --> 05:33:06,600 STUDY PARTICIPANTS. 10072 05:33:06,600 --> 05:33:08,480 AND THAT ECHO IN GENERAL SHOULD 10073 05:33:08,480 --> 05:33:10,960 BE TRANSPARENT AND TRUSTWORTHY, 10074 05:33:10,960 --> 05:33:12,640 SHARE RESULTS IN FORMATS AND 10075 05:33:12,640 --> 05:33:14,080 LANGUAGE THAT PEOPLE CAN 10076 05:33:14,080 --> 05:33:16,400 UNDERSTAND, AND THAT IS USEFUL, 10077 05:33:16,400 --> 05:33:18,960 AND ENGAGE IN DIALOGUE WITH 10078 05:33:18,960 --> 05:33:19,840 PARTICIPANT COMMUNITIES WHERE 10079 05:33:19,840 --> 05:33:29,120 RESEARCH IS BEING CONDUCTED. 10080 05:33:29,120 --> 05:33:29,880 SO OUR PROCESS WAS TO DEVELOP 10081 05:33:29,880 --> 05:33:30,960 THESE BASIC ELEMENTS. 10082 05:33:30,960 --> 05:33:34,720 ONE WAS AN INDIVIDUAL RETURN OF 10083 05:33:34,720 --> 05:33:36,280 RESEARCH RESULTS POLICY. 10084 05:33:36,280 --> 05:33:38,000 AND THE OTHER ONE WAS A RETURN 10085 05:33:38,000 --> 05:33:41,200 OF INDIVIDUAL RESULTS PROCESS. 10086 05:33:41,200 --> 05:33:43,280 AND WE DEVELOPED INDIVIDUAL 10087 05:33:43,280 --> 05:33:45,840 RETURN OF RESULTS CATEGORIZATION 10088 05:33:45,840 --> 05:33:47,160 TABLES, BOTH FOR THE PARENT 10089 05:33:47,160 --> 05:33:49,840 REPORT AND CHILD REPORT. 10090 05:33:49,840 --> 05:33:55,680 AND THEN ALSO WE COLLECTED THE 10091 05:33:55,680 --> 05:33:57,480 RESOURCES FROM COHORTS THAT WERE 10092 05:33:57,480 --> 05:34:00,240 ALREADY DOING REPORT BACK TO 10093 05:34:00,240 --> 05:34:01,440 SHARE WITH OTHER INTERESTED 10094 05:34:01,440 --> 05:34:02,440 COHORTS THAT WANTED TO DO THAT 10095 05:34:02,440 --> 05:34:02,840 WORK. 10096 05:34:02,840 --> 05:34:05,120 WE ALSO DEVELOPED A RETURN OF 10097 05:34:05,120 --> 05:34:05,960 AGGREGATE RESULTS POLICY, WHICH 10098 05:34:05,960 --> 05:34:07,080 I WILL NOT HAVE TIME TO TALK 10099 05:34:07,080 --> 05:34:13,840 ABOUT TODAY. 10100 05:34:13,840 --> 05:34:16,400 SO THE POLICY BASICALLY APPLIES 10101 05:34:16,400 --> 05:34:17,400 TO INDIVIDUAL RESULTS, IT'S KIND 10102 05:34:17,400 --> 05:34:20,840 OF AN OVERARCHING POLICY THAT 10103 05:34:20,840 --> 05:34:21,480 BASICALLY SAYS FINDINGS THAT 10104 05:34:21,480 --> 05:34:22,600 PRESENT IMMEDIATE RISK TO THE 10105 05:34:22,600 --> 05:34:23,440 PARTICIPANTS SHOULD BE HANDLED 10106 05:34:23,440 --> 05:34:25,240 ACCORDING TO THE GUIDELINES OF 10107 05:34:25,240 --> 05:34:27,280 ECHO'S MANUAL OF PROCEDURES. 10108 05:34:27,280 --> 05:34:29,240 SO -- AND THE OTHER SORT OF 10109 05:34:29,240 --> 05:34:34,520 PAWRL LEL WITHPARALLEL, IF THERT 10110 05:34:34,520 --> 05:34:35,600 RISK TO PARTICIPANTS OR OTHERS 10111 05:34:35,600 --> 05:34:37,880 WILL BE HANDLED PER COHORT 10112 05:34:37,880 --> 05:34:38,840 SPECIFIC PROCEDURES AND 10113 05:34:38,840 --> 05:34:39,840 REQUIREMENTS OF FEDERAL, STATE 10114 05:34:39,840 --> 05:34:40,920 AND LOCAL LAWS. 10115 05:34:40,920 --> 05:34:42,440 SO FOR EXAMPLE, IN CALIFORNIA, 10116 05:34:42,440 --> 05:34:43,600 IF WE WERE TO FIND A VERY HIGH 10117 05:34:43,600 --> 05:34:45,160 BLOOD LEAD LEVEL, WE WOULD HAVE 10118 05:34:45,160 --> 05:34:47,000 AN OBLIGATION UNDER THE 10119 05:34:47,000 --> 05:34:47,600 DEPARTMENT OF PUBLIC HEALTH 10120 05:34:47,600 --> 05:34:48,280 RULES TO RETURN THOSE RESULTS TO 10121 05:34:48,280 --> 05:34:50,680 THAT STUDY PARTICIPANT AND WORK 10122 05:34:50,680 --> 05:34:54,360 WITH THE HEALTH DEPARTMENT TO 10123 05:34:54,360 --> 05:34:55,400 INVESTIGATE THE SOURCE. 10124 05:34:55,400 --> 05:34:57,680 AND THEN PARTICIPANTS SHOULD 10125 05:34:57,680 --> 05:34:59,840 RETAIN THE RYAN RITE TO REFUSE 10126 05:34:59,840 --> 05:35:01,280 THE RETURN OF ANY SPECIFIC 10127 05:35:01,280 --> 05:35:03,320 INDIVIDUAL RESULTS OR ALL RETURN 10128 05:35:03,320 --> 05:35:07,920 OF INDIVIDUAL RESULTS. 10129 05:35:07,920 --> 05:35:09,120 SO OUR STANDARDS FOR RESULTS 10130 05:35:09,120 --> 05:35:11,560 RETURN THAT WE WERE ABLE TO GAIN 10131 05:35:11,560 --> 05:35:12,160 CONSENSUS ON WERE THAT RESULTS 10132 05:35:12,160 --> 05:35:16,160 SHOULD BE FRAMED BY THEIR 10133 05:35:16,160 --> 05:35:17,160 CONTEXT, AND SO AGAIN, THIS HAS 10134 05:35:17,160 --> 05:35:18,640 BEEN DISCUSSED EARLIER. 10135 05:35:18,640 --> 05:35:19,520 WHEREVER WE CAN PROVIDE 10136 05:35:19,520 --> 05:35:20,480 PUBLISHED EVIDENCE TO PROVIDE 10137 05:35:20,480 --> 05:35:22,800 CONTEXT TO THE NUMBERS OR ARE 10138 05:35:22,800 --> 05:35:24,120 COMPARING PARTICIPANTS WITH 10139 05:35:24,120 --> 05:35:24,800 OTHER PARTICIPANTS EITHER WITHIN 10140 05:35:24,800 --> 05:35:28,000 THEIR COHORT OR ECHO-WIDE, 10141 05:35:28,000 --> 05:35:29,520 COMPARING WITH BENCHMARKS IF 10142 05:35:29,520 --> 05:35:31,320 THEY'RE AVAILABLE IN THE CASE OF 10143 05:35:31,320 --> 05:35:31,920 ENVIRONMENTAL HEALTH DATA IF 10144 05:35:31,920 --> 05:35:33,240 THERE ARE REGULATORY BENCHMARKS 10145 05:35:33,240 --> 05:35:38,800 TO WHICH CAN BE COMPARED. 10146 05:35:38,800 --> 05:35:39,800 IRB OBVIOUSLY HAS TO APPROVE THE 10147 05:35:39,800 --> 05:35:41,800 PROTOCOL FOR RETURNING -- 10148 05:35:41,800 --> 05:35:42,520 RESULTS RETURN AND WE NEED TO 10149 05:35:42,520 --> 05:35:44,400 HAVE A PROCESS IN PLACE ABOUT 10150 05:35:44,400 --> 05:35:45,320 HOW WE'RE GOING TO HANDLE 10151 05:35:45,320 --> 05:35:47,640 PARTICIPANT QUERIES. 10152 05:35:47,640 --> 05:35:48,840 THERE SHOULD BE A LIST OF 10153 05:35:48,840 --> 05:35:50,600 REFERRAL RESOURCES AVAILABLE FOR 10154 05:35:50,600 --> 05:35:51,240 CLINICALLY RELEVANT RESULTS OR 10155 05:35:51,240 --> 05:35:53,800 THAT MIGHT REQUIRE FOLLOW-UP. 10156 05:35:53,800 --> 05:35:55,360 RESULTS THAT ARE AVAILABLE 10157 05:35:55,360 --> 05:35:57,760 IMMEDIATELY AND THAT CAN BE 10158 05:35:57,760 --> 05:36:00,920 RETURNED IN SOME AVAILABLE 10159 05:36:00,920 --> 05:36:03,840 CONTEXTUAL WAY WHERE THE TEST 10160 05:36:03,840 --> 05:36:05,160 SHOULD BE RETURNED IMMEDIATELY. 10161 05:36:05,160 --> 05:36:06,720 THERE'S OTHER RESULTS OBVIOUSLY 10162 05:36:06,720 --> 05:36:07,400 THAT WE TALKED ABOUT THAT 10163 05:36:07,400 --> 05:36:09,280 REQUIRE A LOT OF TIME, LAB TESTS 10164 05:36:09,280 --> 05:36:12,280 FOR ENVIRONMENTAL CHEMICALS, FOR 10165 05:36:12,280 --> 05:36:13,400 EXAMPLE. 10166 05:36:13,400 --> 05:36:14,720 THESE CAN BE RETURNED 10167 05:36:14,720 --> 05:36:15,360 PERIODICALLY VIA DIFFERENT 10168 05:36:15,360 --> 05:36:16,560 METHODS THAT WERE DISCUSSED BY 10169 05:36:16,560 --> 05:36:19,560 OUR PARTICIPANTS. 10170 05:36:19,560 --> 05:36:20,360 LANGUAGE SHOULD BE APPROPRIATE 10171 05:36:20,360 --> 05:36:21,640 AND THAT RESULTS FOR A CHILD 10172 05:36:21,640 --> 05:36:22,480 PARTICIPANT SHOULD BE RETURNED 10173 05:36:22,480 --> 05:36:24,160 TO THE PARENT AND RESULTS FOR 10174 05:36:24,160 --> 05:36:25,600 PARTICIPANTS OVER 18 SHOULD BE 10175 05:36:25,600 --> 05:36:30,240 RETURNED DIRECTLY TO THEM. 10176 05:36:30,240 --> 05:36:32,480 SO THIS WAS THE HARD PART. 10177 05:36:32,480 --> 05:36:33,880 WE DEVELOPED BASICALLY AFTER A 10178 05:36:33,880 --> 05:36:38,040 LOT OF DELIBERATION AND I WOULD 10179 05:36:38,040 --> 05:36:39,400 ARGUE CONSTERNATION A TIERED 10180 05:36:39,400 --> 05:36:41,400 APPROACH FOR RETURNING RESULTS. 10181 05:36:41,400 --> 05:36:43,600 AND WE DEVELOPED THREE TIERS FOR 10182 05:36:43,600 --> 05:36:45,080 RESULTS RETURN BY THE DIFFERENT 10183 05:36:45,080 --> 05:36:49,680 DATA DOMAINS WITHIN ECHO, AND 10184 05:36:49,680 --> 05:36:50,880 THESE THREE TIERS WERE THINGS 10185 05:36:50,880 --> 05:36:52,600 THAT WERE REQUIRED TO BE 10186 05:36:52,600 --> 05:36:54,560 REPORTED BACK TO PARTICIPANTS, 10187 05:36:54,560 --> 05:36:55,200 THINGS THAT ARE RECOMMENDED TO 10188 05:36:55,200 --> 05:36:56,440 BE REPORTED BACK, AND THEN 10189 05:36:56,440 --> 05:36:59,160 THINGS THAT SHOULD NOT BE 10190 05:36:59,160 --> 05:36:59,520 RETURNED. 10191 05:36:59,520 --> 05:37:01,200 SO YOU CAN SEE THAT BASICALLY AT 10192 05:37:01,200 --> 05:37:03,400 THE END, THE CONSENSUS WAS THAT 10193 05:37:03,400 --> 05:37:07,200 NOTHING SHOULD BE REQUIRED. 10194 05:37:07,200 --> 05:37:09,320 13 DATA ELEMENTS WERE CONSIDERED 10195 05:37:09,320 --> 05:37:13,640 TO BE RECOMMENDED. 10196 05:37:13,640 --> 05:37:15,160 AND THEN OVERWHELMING LIMOS OF 10197 05:37:15,160 --> 05:37:18,200 THE DATA ELEMENTS WERE NOT -- 10198 05:37:18,200 --> 05:37:21,880 RECOMMENDED TO NOT BE RETURNED. 10199 05:37:21,880 --> 05:37:23,520 AND THIS WAS A VERY DELIBERATIVE 10200 05:37:23,520 --> 05:37:25,600 PROCESS WITH A BUNCH OF HEALTH 10201 05:37:25,600 --> 05:37:27,960 OUT COME WORK GROUPS THAT 10202 05:37:27,960 --> 05:37:29,800 PROVIDED INPUT AS PART OF THIS 10203 05:37:29,800 --> 05:37:30,800 TIERED CATEGORIZATION PROCESS 10204 05:37:30,800 --> 05:37:35,280 FOR ESSENTIAL DATA ELEMENTS. 10205 05:37:35,280 --> 05:37:37,920 SO THE LESSONS LEARNED FROM THIS 10206 05:37:37,920 --> 05:37:39,840 PROCESS, ONE, WAS THAT WE 10207 05:37:39,840 --> 05:37:41,160 DERIVED AT LEAST A STARTING 10208 05:37:41,160 --> 05:37:47,240 POINT, I WOULD ARGUE A FLOOR OFR 10209 05:37:47,240 --> 05:37:48,000 CONSENSUS -- THAT WE CAN START 10210 05:37:48,000 --> 05:37:48,640 TO BUILD UPON. 10211 05:37:48,640 --> 05:37:50,320 WE DID SHARE EXISTING TEMPLATES 10212 05:37:50,320 --> 05:37:52,080 AND EXPERIENCES FROM THOSE 10213 05:37:52,080 --> 05:37:53,840 COHORTS THAT HAVE UNDERTAKEN 10214 05:37:53,840 --> 05:37:54,720 REPORTBACK SUCCESSFULLY FOR 10215 05:37:54,720 --> 05:37:56,240 THOSE PIs THAT ARE INTERESTED 10216 05:37:56,240 --> 05:38:00,360 IN UNDERTAKING REPORT BACK. 10217 05:38:00,360 --> 05:38:03,000 WE WERE FORTUNATE IN THAT WE 10218 05:38:03,000 --> 05:38:05,320 RECEIVED FUNDING FROM ECHO 10219 05:38:05,320 --> 05:38:06,800 THROUGH THE OPPORTUNITIES 10220 05:38:06,800 --> 05:38:09,080 INFRASTRUCTURE FUND, OIF, THAT 10221 05:38:09,080 --> 05:38:12,120 HAS SUPPORTED THE APPLICATION OF 10222 05:38:12,120 --> 05:38:14,320 THE JUDICIAL REPORTBACK 10223 05:38:14,320 --> 05:38:16,720 INTERFACE DERBI PLATFORM WHICH 10224 05:38:16,720 --> 05:38:18,800 WAS DEVELOPED BY JULIA BRODY AND 10225 05:38:18,800 --> 05:38:19,760 COLLEAGUES AT SILENT SPRING AND 10226 05:38:19,760 --> 05:38:24,480 WE USED THAT IN OUR COHORTS AND 10227 05:38:24,480 --> 05:38:25,720 CHEMICALS IN OUR BODIES IN 10228 05:38:25,720 --> 05:38:28,040 SAN FRANCISCO AND I-KIDS IN 10229 05:38:28,040 --> 05:38:29,000 URBANA AND THAT'S GOING TO BE 10230 05:38:29,000 --> 05:38:30,440 DISCUSSED TOMORROW SO THAT'S A 10231 05:38:30,440 --> 05:38:32,720 LITTLE PLUG FOR TOMORROW'S TALKS 10232 05:38:32,720 --> 05:38:36,160 BY ANNIE PADULA AND JULIA BRODY. 10233 05:38:36,160 --> 05:38:37,160 AND THE OTHER LESSON IS THAT 10234 05:38:37,160 --> 05:38:39,160 THERE'S A PAUCITY OF RESOURCES 10235 05:38:39,160 --> 05:38:40,560 AND CAPACITY BUILDING RIGHT NOW 10236 05:38:40,560 --> 05:38:44,240 FOR COHORT P.I.s TO TAKE AND 10237 05:38:44,240 --> 05:38:45,880 UNDERTAKE RESULTS RETURN WITHIN 10238 05:38:45,880 --> 05:38:47,520 ECHO, AND I THINK THAT'S WHY WE 10239 05:38:47,520 --> 05:38:48,720 HAD ZERO REQUIRED. 10240 05:38:48,720 --> 05:38:52,400 AND RELATIVELY FEW RECOMMENDED. 10241 05:38:52,400 --> 05:39:00,720 SO WHAT ARE THE LESSONS LEARNED. 10242 05:39:00,720 --> 05:39:03,120 I THINK WHILE RESEARCH AND 10243 05:39:03,120 --> 05:39:06,520 SCIENTIFIC DISKF DISCOVERY IS S, 10244 05:39:06,520 --> 05:39:07,080 PARTICIPANTS AND COMMUNITIES 10245 05:39:07,080 --> 05:39:08,560 WANT INFORMATION NOW AS IT 10246 05:39:08,560 --> 05:39:11,080 BECOMES AVAILABLE. 10247 05:39:11,080 --> 05:39:12,520 SO MANY OF US WHO HAVE WORKED ON 10248 05:39:12,520 --> 05:39:15,200 THIS AND EVALUATED OUR 10249 05:39:15,200 --> 05:39:17,240 PARTICIPANTS' REACTION TO 10250 05:39:17,240 --> 05:39:18,880 RESULTS RETURN, WE'D ARGUE THAT 10251 05:39:18,880 --> 05:39:20,840 RESULTS RETURN CAN ADVANCE KIND 10252 05:39:20,840 --> 05:39:23,440 OF WHAT I LIKE TO CALL THE THREE 10253 05:39:23,440 --> 05:39:24,840 Rs. 10254 05:39:24,840 --> 05:39:26,040 RIGOR, RELEVANCE AND REACH. 10255 05:39:26,040 --> 05:39:27,800 RIGOR MEANING THAT IT IMPROVES 10256 05:39:27,800 --> 05:39:29,480 PARTICIPANT ENGAGEMENT AND 10257 05:39:29,480 --> 05:39:29,920 RETENTION IN RESEARCH. 10258 05:39:29,920 --> 05:39:33,360 I THINK IT ALSO MAKES OUR 10259 05:39:33,360 --> 05:39:35,960 SCIENCE BETTER, AND I'M HAPPY TO 10260 05:39:35,960 --> 05:39:37,520 TALK ABOUT THAT IN THE Q & A. 10261 05:39:37,520 --> 05:39:38,680 RELEVANCE IN TERMS OF IT 10262 05:39:38,680 --> 05:39:40,440 ENCOURAGES US TO PROMOTE 10263 05:39:40,440 --> 05:39:42,560 ENVIRONMENTAL AND PUBLIC HEALTH 10264 05:39:42,560 --> 05:39:43,160 LITERACY FOR PARTICIPANTS AND I 10265 05:39:43,160 --> 05:39:44,000 THINK THAT'S A POINT THAT MONICA 10266 05:39:44,000 --> 05:39:47,200 MADE THIS MORNING. 10267 05:39:47,200 --> 05:39:49,000 THESE ARE HUGE SCIENTIFIC 10268 05:39:49,000 --> 05:39:50,200 LITERACY OPPORTUNITIES. 10269 05:39:50,200 --> 05:39:51,120 IF WE REALLY WANT TO PUT OUR 10270 05:39:51,120 --> 05:39:52,840 MONEY WHERE OUR MOUTH IS IN 10271 05:39:52,840 --> 05:39:55,280 TERMS OF DEMOCRATIZING THE 10272 05:39:55,280 --> 05:39:56,040 SCIENTIFIC ENTERPRISE, THIS IS A 10273 05:39:56,040 --> 05:39:58,480 HUGE PATHWAY TO GET THERE. 10274 05:39:58,480 --> 05:39:59,480 AND THEN REACH. 10275 05:39:59,480 --> 05:40:05,040 HOW CAN WE USE REPORTBACK TO 10276 05:40:05,040 --> 05:40:06,000 LEVERAGE SCIENTIFIC EVIDENCE TO 10277 05:40:06,000 --> 05:40:07,400 FACILITATE TIMELY INTERVENTIONS. 10278 05:40:07,400 --> 05:40:08,080 WHETHER THAT'S INDIVIDUAL 10279 05:40:08,080 --> 05:40:10,120 ACTIONS THAT PEOPLE CAN TAKE OR 10280 05:40:10,120 --> 05:40:10,840 LETTING PEOPLE KNOW ABOUT 10281 05:40:10,840 --> 05:40:11,920 COLLECTIVE ACTIONS. 10282 05:40:11,920 --> 05:40:13,280 AND ALSO LETTING PEOPLE KNOW 10283 05:40:13,280 --> 05:40:15,280 ABOUT, FOR EXAMPLE, IN THE CASE 10284 05:40:15,280 --> 05:40:17,560 OF ENVIRONMENTAL CHEMICAL 10285 05:40:17,560 --> 05:40:18,360 EXPOSURES, THERE'S SOME RESULTS 10286 05:40:18,360 --> 05:40:19,440 THAT YOU CAN'T DO ANYTHING 10287 05:40:19,440 --> 05:40:21,520 ABOUT, OKAY, AND I WOULD LIKE TO 10288 05:40:21,520 --> 05:40:22,080 TALK ABOUT THIS A LITTLE BIT 10289 05:40:22,080 --> 05:40:26,320 MORE IN THE Q & A AS WELL. 10290 05:40:26,320 --> 05:40:28,040 THEN THE ABILITY TO PROMOTE MORE 10291 05:40:28,040 --> 05:40:29,560 ENGAGEMENT WITH CLINICIANS AND 10292 05:40:29,560 --> 05:40:30,240 HEALTHCARE PROVIDERS, FOR 10293 05:40:30,240 --> 05:40:33,400 EXAMPLE, WITH SUPPORT FROM 10294 05:40:33,400 --> 05:40:36,240 ORGANIZATIONS LIKE THE PAHSHUS 10295 05:40:36,240 --> 05:40:36,960 THAT WAS MENTIONED THIS MORNING. 10296 05:40:36,960 --> 05:40:38,400 SO WHEN WE THINK ABOUT THIS 10297 05:40:38,400 --> 05:40:40,760 CHALLENGING TOPIC ABOUT WHAT 10298 05:40:40,760 --> 05:40:41,360 STUDY PARTICIPANTS CAN DO, AND 10299 05:40:41,360 --> 05:40:42,520 I'M TALKING ABOUT THIS FROM THE 10300 05:40:42,520 --> 05:40:43,800 CONTEXT OF ENVIRONMENTAL 10301 05:40:43,800 --> 05:40:48,520 CHEMICAL EXPOSURES, THIS IS A 10302 05:40:48,520 --> 05:40:48,800 HARD ONE. 10303 05:40:48,800 --> 05:40:49,720 IT'S NOT NECESSARILY 10304 05:40:49,720 --> 05:40:50,160 STRAIGHTFORWARD. 10305 05:40:50,160 --> 05:40:51,080 BECAUSE WE KNOW THAT CHEMICALS 10306 05:40:51,080 --> 05:40:52,560 COME FROM A LOT OF DIFFERENT 10307 05:40:52,560 --> 05:40:53,360 SOURCES, THEY DON'T NECESSARILY 10308 05:40:53,360 --> 05:40:54,480 LEAVE A CALLING CARD FROM WHERE 10309 05:40:54,480 --> 05:40:57,560 THEY CAME. 10310 05:40:57,560 --> 05:40:59,600 AND SOME OF THOSE CHEMICAL 10311 05:40:59,600 --> 05:41:00,560 EXPOSURES HAVE DIFFERENT 10312 05:41:00,560 --> 05:41:01,760 CHALLENGES IN TERMS OF HOW WE 10313 05:41:01,760 --> 05:41:04,480 CAN AVOID THEM AS INDIVIDUALS. 10314 05:41:04,480 --> 05:41:06,520 SO I TRIED TO PROVIDE THIS 10315 05:41:06,520 --> 05:41:07,920 SCHEMATIC, FOR EXAMPLE, OUTDOOR 10316 05:41:07,920 --> 05:41:09,160 SOURCES OF ENVIRONMENTAL 10317 05:41:09,160 --> 05:41:11,080 CHEMICAL EXPOSURES CAN BE VERY 10318 05:41:11,080 --> 05:41:11,440 HARD TO AVOID. 10319 05:41:11,440 --> 05:41:13,920 YOU CAN'T JUST UP AND MOVE. 10320 05:41:13,920 --> 05:41:16,120 SOME CONSUMER PRODUCTS AND 10321 05:41:16,120 --> 05:41:17,520 DRINKING WATER CONTAMINATION 10322 05:41:17,520 --> 05:41:18,720 SOURCES ARE VERY HARD TO AVOID. 10323 05:41:18,720 --> 05:41:21,760 FOR EXAMPLE, FLAME RETARDANTS 10324 05:41:21,760 --> 05:41:22,360 AND PFAS. 10325 05:41:22,360 --> 05:41:24,000 AND THEN THERE'S OTHER CONSUMER 10326 05:41:24,000 --> 05:41:25,120 PRODUCT EXPOSURES THAT MIGHT BE 10327 05:41:25,120 --> 05:41:26,880 EASIER TO AVOID. 10328 05:41:26,880 --> 05:41:29,120 IE, USE OF INDOOR PESTICIDES. 10329 05:41:29,120 --> 05:41:33,040 AND SO I THINK IN OUR REPORTBACK 10330 05:41:33,040 --> 05:41:34,840 PROTOCOLS, WE WANT TO SORT OF 10331 05:41:34,840 --> 05:41:35,760 EXPAND OUR IMAGINATION A LITTLE 10332 05:41:35,760 --> 05:41:37,400 BIT AND HELP PARTICIPANTS 10333 05:41:37,400 --> 05:41:38,240 DISTINGUISH BETWEEN THOSE THINGS 10334 05:41:38,240 --> 05:41:41,520 OVER WHICH WE MIGHT HAVE 10335 05:41:41,520 --> 05:41:43,240 INDIVIDUAL CONTROL AND THOSE 10336 05:41:43,240 --> 05:41:43,800 THINGS OVER WHICH WE MAY NOT 10337 05:41:43,800 --> 05:41:45,000 HAVE INDIVIDUAL CONTROL AND THAT 10338 05:41:45,000 --> 05:41:47,320 REQUIRE COLLECTIVE AND/OR POLICY 10339 05:41:47,320 --> 05:41:48,800 CHANGE, AND THEN THAT CAN BE 10340 05:41:48,800 --> 05:41:49,240 LIBERATING TOO. 10341 05:41:49,240 --> 05:41:50,760 WHEN YOU TELL SOMEBODY THAT I 10342 05:41:50,760 --> 05:41:53,160 FOUND A CHEMICAL IN YOU AND THIS 10343 05:41:53,160 --> 05:41:55,120 IS SOMETHING THAT IS FOUND IN 10344 05:41:55,120 --> 05:41:56,440 NEARLY 100% OF THE U.S. 10345 05:41:56,440 --> 05:41:57,520 POPULATION, THIS IS REALLY NOT 10346 05:41:57,520 --> 05:42:00,560 ABOUT YOU, THIS IS A SYSTEMIC 10347 05:42:00,560 --> 05:42:02,280 PROBLEM, THAT, IN FACT, CAN BE 10348 05:42:02,280 --> 05:42:03,400 KIND OF LIBERATING. 10349 05:42:03,400 --> 05:42:05,400 YOU DON'T HAVE TO FEEL HAD, YOU 10350 05:42:05,400 --> 05:42:05,960 DIDN'T DO ANYTHING WRONG. 10351 05:42:05,960 --> 05:42:07,240 THIS IS AN ISSUE THAT REQUIRES 10352 05:42:07,240 --> 05:42:11,240 COLLECTIVE ACTION. 10353 05:42:11,240 --> 05:42:14,200 SO FOR EXAMPLE, IN OUR DERBY 10354 05:42:14,200 --> 05:42:14,960 INTERFACE WHICH AGAIN WILL BE 10355 05:42:14,960 --> 05:42:16,040 TALKED ABOUT MORE TOMORROW, WE 10356 05:42:16,040 --> 05:42:17,480 PROVIDE KIND OF A DUAL 10357 05:42:17,480 --> 05:42:21,320 RECOMMENDATION APPROACH WHERE WE 10358 05:42:21,320 --> 05:42:21,760 PROVIDE INFORMATION ON 10359 05:42:21,760 --> 05:42:22,400 INDIVIDUAL ACTION THAT PEOPLE 10360 05:42:22,400 --> 05:42:23,360 CAN TAKE, BUT ALSO LETTING 10361 05:42:23,360 --> 05:42:24,760 PEOPLE KNOW WHERE THERE'S BEEN 10362 05:42:24,760 --> 05:42:26,320 SOME POLICY CHANGE THAT HAVE 10363 05:42:26,320 --> 05:42:27,400 RESULTED IN DECREASED EXPOSURES 10364 05:42:27,400 --> 05:42:30,760 IN THE POPULATION TO HELP 10365 05:42:30,760 --> 05:42:33,200 ENHANCE ENVIRONMENTAL HEALTH 10366 05:42:33,200 --> 05:42:34,440 LITERACY ABOUT DIFFERENT SOURCES 10367 05:42:34,440 --> 05:42:36,080 AND WHICH ONES ARE MORE AMENABLE 10368 05:42:36,080 --> 05:42:39,840 TO INDIVIDUAL CONTROL. 10369 05:42:39,840 --> 05:42:42,040 SO I WANT TO CLOSE WITH THINKING 10370 05:42:42,040 --> 05:42:42,640 ABOUT FRAME WORKS FOR HOW WE 10371 05:42:42,640 --> 05:42:43,360 THINK ABOUT PARTICIPANT 10372 05:42:43,360 --> 05:42:46,520 ENGAGEMENT IN RESULTS RETURN. 10373 05:42:46,520 --> 05:42:48,480 AND IF YOU LOOK AT THIS 10374 05:42:48,480 --> 05:42:49,280 SCHEMATIC ON THE LEFT, THIS HAS 10375 05:42:49,280 --> 05:42:54,160 BEEN SORT OF THE OLD WAY, AND 10376 05:42:54,160 --> 05:42:56,920 WE'RE SLOWLY STARTING TO MOVE 10377 05:42:56,920 --> 05:42:59,280 TOWARDS THE RIGHT. 10378 05:42:59,280 --> 05:43:00,920 YOUR RIGHT TOO. 10379 05:43:00,920 --> 05:43:02,240 AND AT THE VERY END, WE DIDN'T 10380 05:43:02,240 --> 05:43:03,200 REALLY THINK ABOUT TALKING TO 10381 05:43:03,200 --> 05:43:06,120 OUR PARTICIPANTS. 10382 05:43:06,120 --> 05:43:06,640 WE DIDN'T EVEN THINK ABOUT 10383 05:43:06,640 --> 05:43:07,080 RETURNING RESULTS. 10384 05:43:07,080 --> 05:43:09,120 AND NOW, WE'RE REALLY STARTING 10385 05:43:09,120 --> 05:43:11,640 TO THINK ABOUT HOW DO WE ENGAGE 10386 05:43:11,640 --> 05:43:12,240 OUR PARTICIPANTS AND GET THEIR 10387 05:43:12,240 --> 05:43:15,600 FEEDBACK IN TERMS OF HOW THEY 10388 05:43:15,600 --> 05:43:16,920 WANT THEIR RESULTS BACK, IN WHAT 10389 05:43:16,920 --> 05:43:18,840 WAY, WHAT ARE SOME MESSAGES THAT 10390 05:43:18,840 --> 05:43:20,800 ARE HELPFUL, AND THEN ON THE FAR 10391 05:43:20,800 --> 05:43:23,080 END, HOW DO WE THEN COME BACK TO 10392 05:43:23,080 --> 05:43:24,800 THEM WHEN WE'VE RETURNED RESULTS 10393 05:43:24,800 --> 05:43:25,680 TO EVALUATE HOW THEY ACTED UPON 10394 05:43:25,680 --> 05:43:28,120 IT, HOW THEY FELT, AND HOW WE 10395 05:43:28,120 --> 05:43:29,880 CAN MAKE RESULTS RETURN BETTER 10396 05:43:29,880 --> 05:43:32,720 GOING FORWARD. 10397 05:43:32,720 --> 05:43:35,240 THIS IS AN ITERATIVE PROCESS, 10398 05:43:35,240 --> 05:43:35,640 OKAY? 10399 05:43:35,640 --> 05:43:39,400 WE THINK ABOUT SOFTWARE PROGRAMS 10400 05:43:39,400 --> 05:43:41,000 THAT ARE IN BETA VERSION. 10401 05:43:41,000 --> 05:43:42,200 IF WE THINK ABOUT RESULTS RETURN 10402 05:43:42,200 --> 05:43:44,040 AS SOMETHING THAT'S CONTINUALLY 10403 05:43:44,040 --> 05:43:45,160 IN BETA VERSION, THAT WE'RE 10404 05:43:45,160 --> 05:43:48,200 ALWAYS TRYING TO IMPROVE UPON, I 10405 05:43:48,200 --> 05:43:51,080 THINK WE AS SCIENTISTS WILL FEEL 10406 05:43:51,080 --> 05:43:52,080 BETTER, PARTICULARLY WHEN WE'RE 10407 05:43:52,080 --> 05:43:53,640 CONSTANTLY GOING BACK TO OUR 10408 05:43:53,640 --> 05:43:54,080 PARTICIPANTS. 10409 05:43:54,080 --> 05:43:55,360 IT WILL DEPEND ON THE TOPIC, IT 10410 05:43:55,360 --> 05:43:57,480 WILL DEPEND ON THE CONTEXT, IT 10411 05:43:57,480 --> 05:43:57,960 WILL DEPEND ON THE STUDY 10412 05:43:57,960 --> 05:43:59,920 COMMUNITY THAT WE'RE ENGAGING 10413 05:43:59,920 --> 05:44:00,360 WITH. 10414 05:44:00,360 --> 05:44:02,920 BUT HERE'S ONE EXAMPLE OF HOW WE 10415 05:44:02,920 --> 05:44:04,440 MIGHT THINK ABOUT THIS ITERATIVE 10416 05:44:04,440 --> 05:44:05,120 PROCESS FOR RESULTS RETURNED 10417 05:44:05,120 --> 05:44:06,520 WHERE WE ENGAGE IN FOCUS GROUPS 10418 05:44:06,520 --> 05:44:08,560 OR INTERVIEWS OF PARTICIPANTS TO 10419 05:44:08,560 --> 05:44:09,160 GET A SENSE ABOUT WHAT MOTIVATES 10420 05:44:09,160 --> 05:44:10,400 THEM TO GET INTO RESEARCH IN THE 10421 05:44:10,400 --> 05:44:15,120 FIRST PLACE, WHAT THEY WANT, 10422 05:44:15,120 --> 05:44:16,600 THAT CAN INFLUENCE PROTOTYPE 10423 05:44:16,600 --> 05:44:19,000 DESIGN, WE CAN CONDUCT USABILITY 10424 05:44:19,000 --> 05:44:22,200 TESTING OF PROTOTYPES, THEN WE 10425 05:44:22,200 --> 05:44:23,280 ADAPT, THEN WE FINALIZE, THEN WE 10426 05:44:23,280 --> 05:44:24,840 TAKE REPORTBACK, WE EVALUATE HOW 10427 05:44:24,840 --> 05:44:27,120 IT WENT, WE ADAPT THE PROTOCOL 10428 05:44:27,120 --> 05:44:31,040 FOR THE NEXT ROUND, REPEAT. 10429 05:44:31,040 --> 05:44:32,680 SO IN TERMS OF FUTURE RESEARCH 10430 05:44:32,680 --> 05:44:36,480 AND RECOMMENDATIONS, I THINK 10431 05:44:36,480 --> 05:44:39,000 GOING FORWARD, WE WANT TO DO A 10432 05:44:39,000 --> 05:44:40,680 GOOD JOB ABOUT HOW DO WE 10433 05:44:40,680 --> 05:44:42,280 CHARACTERIZE PARTICIPANTS' 10434 05:44:42,280 --> 05:44:43,960 DIVERSE PERSPECTIVES AND THEIR 10435 05:44:43,960 --> 05:44:44,760 MOTIVATIONS FOR PARTICIPATING IN 10436 05:44:44,760 --> 05:44:45,640 RESEARCH IN THE FIRST PLACE. 10437 05:44:45,640 --> 05:44:48,360 WHAT ARE THEIR EXPECTATIONS FOR 10438 05:44:48,360 --> 05:44:48,720 RESULTS RETURN? 10439 05:44:48,720 --> 05:44:49,360 AND THERE'S LOTS OF WAYS TO DO 10440 05:44:49,360 --> 05:44:49,560 THAT. 10441 05:44:49,560 --> 05:44:50,760 MANY OF US HAVE DONE IT, WE 10442 05:44:50,760 --> 05:44:52,680 DON'T HAVE TO REINVENT THE 10443 05:44:52,680 --> 05:44:52,880 WHEEL. 10444 05:44:52,880 --> 05:44:55,560 HOW DO WE ASSESS HOW RESULTS 10445 05:44:55,560 --> 05:44:56,840 RETURN AFFECTS PARTICIPANTS' 10446 05:44:56,840 --> 05:44:58,520 RETENTION AND ENGAGEMENT WITHIN 10447 05:44:58,520 --> 05:45:03,440 THE RESEARCH ENTERPRISE? 10448 05:45:03,440 --> 05:45:04,040 AGAIN, THERE'S BEEN A LOT OF 10449 05:45:04,040 --> 05:45:06,000 LITERATURE PUBLISHED ON THIS. 10450 05:45:06,000 --> 05:45:07,440 AND WE CAN RETOOL THE 10451 05:45:07,440 --> 05:45:08,640 INSTRUMENTS THAT HAVE BEEN USED 10452 05:45:08,640 --> 05:45:09,800 ALREADY FOR EVALUATION FOR OTHER 10453 05:45:09,800 --> 05:45:12,560 COULDCONTEXTS. 10454 05:45:12,560 --> 05:45:14,760 THENLESS TEST, ADAPT, ENHANCE, 10455 05:45:14,760 --> 05:45:16,600 SCALE UP AND EVALUATE 10456 05:45:16,600 --> 05:45:21,920 FIELD-TESTS TOTESTED TOOLS WE KK 10457 05:45:21,920 --> 05:45:29,240 LIKE DERBI, AND PROVIDE 10458 05:45:29,240 --> 05:45:31,080 RESOURCES TO INCENTIVIZE MORE, 10459 05:45:31,080 --> 05:45:32,440 LET'S TRY TO DO THAT FOR THE 10460 05:45:32,440 --> 05:45:33,360 NEXT ROUND OF REPORTBACK. 10461 05:45:33,360 --> 05:45:34,080 THANK YOU. 10462 05:45:34,080 --> 05:45:36,120 >>THANKS, RACHEL. 10463 05:45:36,120 --> 05:45:42,920 QUESTIONS? 10464 05:45:42,920 --> 05:45:44,240 WE HAVE A ZOOM QUESTION? 10465 05:45:44,240 --> 05:45:45,400 >>YES. 10466 05:45:45,400 --> 05:45:46,800 SO GREAT TALK. 10467 05:45:46,800 --> 05:45:48,680 WHEN YOU SAY RESULTS FOR 10468 05:45:48,680 --> 05:45:50,120 PARTICIPANTS BELOW 18 WILL BE 10469 05:45:50,120 --> 05:45:51,560 RETURNED TO PARENTS, DID YOU 10470 05:45:51,560 --> 05:45:53,240 MEAN PARENTS ONLY, OR WILL 10471 05:45:53,240 --> 05:45:54,760 CHILDREN ALSO BE INVOLVED? 10472 05:45:54,760 --> 05:45:58,160 WILL THEY GET -- WILL THEY NEED 10473 05:45:58,160 --> 05:46:00,800 TO GIVE ASCENT? 10474 05:46:00,800 --> 05:46:02,440 >>I DIDN'T HEAR THE LAST PART. 10475 05:46:02,440 --> 05:46:05,960 >>WILL THEY NEED TO GIVE 10476 05:46:05,960 --> 05:46:06,200 ASSENT? 10477 05:46:06,200 --> 05:46:07,480 >>THAT'S GOING TO DEPEND ON THE 10478 05:46:07,480 --> 05:46:09,000 CONTEXT, THE AGE OF THE CHILD. 10479 05:46:09,000 --> 05:46:11,320 THERE HAVE BEEN STUDIES THAT 10480 05:46:11,320 --> 05:46:14,400 HAVE CO-REPORTED WITH CHILDREN 10481 05:46:14,400 --> 05:46:15,640 AND THEIR PARENTS. 10482 05:46:15,640 --> 05:46:16,720 I THINK IT IS VERY 10483 05:46:16,720 --> 05:46:17,040 AGE-DEPENDENT. 10484 05:46:17,040 --> 05:46:19,920 SO I DON'T THINK THERE'S A ONE 10485 05:46:19,920 --> 05:46:21,760 SIZE FITS ALL FOR THAT, BUT I DO 10486 05:46:21,760 --> 05:46:22,440 THINK THAT THAT IS AN IMPORTANT 10487 05:46:22,440 --> 05:46:24,360 THING TO THINK ABOUT WHEN YOU'RE 10488 05:46:24,360 --> 05:46:28,240 LOOKING AT REPORTING BACK 10489 05:46:28,240 --> 05:46:30,000 RESULTS BASED ON KIDS AND THEIR 10490 05:46:30,000 --> 05:46:30,960 PARENTS OR GUARDIANS, AS THE 10491 05:46:30,960 --> 05:46:41,160 CASE MAY BE. 10492 05:46:53,200 --> 05:47:01,080 >>ANOTHER QUESTION? 10493 05:47:01,080 --> 05:47:01,520 BEN? 10494 05:47:01,520 --> 05:47:04,200 >>CAN YOU JUST -- I DON'T THINK 10495 05:47:04,200 --> 05:47:04,800 I MISSED THIS. 10496 05:47:04,800 --> 05:47:08,000 WHAT ARE THE 13 DATA POINTS THAT 10497 05:47:08,000 --> 05:47:09,040 ARE RECOMMENDED TO BE RETURNED? 10498 05:47:09,040 --> 05:47:10,880 OR GIVE US SOME EXAMPLES OF 10499 05:47:10,880 --> 05:47:11,080 THEM? 10500 05:47:11,080 --> 05:47:13,360 >>SOME OF THE EXAMPLES THAT 10501 05:47:13,360 --> 05:47:15,040 WERE AGREED UPON AS RECOMMENDED 10502 05:47:15,040 --> 05:47:17,880 WERE THINGS LIKE THE PROMIS 10503 05:47:17,880 --> 05:47:21,120 GLOBAL HEALTH DATA POINTS, 10504 05:47:21,120 --> 05:47:26,480 SLEEP-RELATED QUESTIONS, AND 10505 05:47:26,480 --> 05:47:30,080 CHILD PHYSICAL ACTIVITY, CHILD 10506 05:47:30,080 --> 05:47:32,920 SLEEP HEALTH, AND THOSE WERE 10507 05:47:32,920 --> 05:47:34,960 KIND OF THE BASIC ONES. 10508 05:47:34,960 --> 05:47:37,760 ALL THE OTHER ONES, PEOPLE 10509 05:47:37,760 --> 05:47:39,720 THOUGHT THAT AT LEAST WITHIN THE 10510 05:47:39,720 --> 05:47:41,120 WORK GROUPS THAT IT WOULD NOT BE 10511 05:47:41,120 --> 05:47:42,760 VALUABLE TO PARTICIPANTS. 10512 05:47:42,760 --> 05:47:45,920 AND AGAIN, I WANT TO EMPHASIZE 10513 05:47:45,920 --> 05:47:47,320 THAT I THINK PART OF THE 10514 05:47:47,320 --> 05:47:48,000 DECISION-MAKING AND 10515 05:47:48,000 --> 05:47:49,440 RECOMMENDATIONS BY THE DIFFERENT 10516 05:47:49,440 --> 05:47:50,280 WORK GROUPS WERE DRIVEN BY THE 10517 05:47:50,280 --> 05:47:51,360 FACT THAT PEOPLE WERE THINKING 10518 05:47:51,360 --> 05:47:52,680 HOW THE HECK DO WE DO THIS 10519 05:47:52,680 --> 05:47:54,160 WITHOUT ANY RESOURCES? 10520 05:47:54,160 --> 05:47:57,680 AND SO THAT'S -- YOU KNOW, I 10521 05:47:57,680 --> 05:47:58,760 THINK PART OF THE PROBLEM WAS 10522 05:47:58,760 --> 05:48:01,400 THAT PEOPLE STARTED -- WE 10523 05:48:01,400 --> 05:48:02,520 STARTED REALLY BIG, AND WHAT I 10524 05:48:02,520 --> 05:48:06,240 WOULD SUGGEST IS THERE'S A LOT 10525 05:48:06,240 --> 05:48:07,320 OF REALLY GOOD EXPERIENCE IN 10526 05:48:07,320 --> 05:48:09,280 THIS ROOM AND BEYOND WITH 10527 05:48:09,280 --> 05:48:09,600 REPORTBACK. 10528 05:48:09,600 --> 05:48:10,280 AND SO IF WE'RE REALLY GOING TO 10529 05:48:10,280 --> 05:48:12,240 THINK ABOUT HOW TO DO REPORTBACK 10530 05:48:12,240 --> 05:48:14,160 IN ECHO, MAYBE WE DON'T HAVE TO 10531 05:48:14,160 --> 05:48:15,200 CHEW THE WHOLE PACK OF GUM AT 10532 05:48:15,200 --> 05:48:16,120 THE SAME TIME. 10533 05:48:16,120 --> 05:48:18,840 WE CAN TAKE LITTLE PIECES THAT 10534 05:48:18,840 --> 05:48:22,760 WE KNOW WORK AND BUILD UPON 10535 05:48:22,760 --> 05:48:22,960 THOSE. 10536 05:48:22,960 --> 05:48:25,520 AND THEN START TO BUILD FROM 10537 05:48:25,520 --> 05:48:25,880 THERE. 10538 05:48:25,880 --> 05:48:27,600 SO I THINK THAT IN THAT 10539 05:48:27,600 --> 05:48:30,440 SITUATION, YOU MIGHT HAVE MORE 10540 05:48:30,440 --> 05:48:32,520 RECEPTIVITY, AND PARTICULARLY 10541 05:48:32,520 --> 05:48:34,160 WHEN THERE'S TOOLS THAT CAN BE 10542 05:48:34,160 --> 05:48:35,240 ADAPTED, PEOPLE AREN'T 10543 05:48:35,240 --> 05:48:36,720 REINVENTING THE WHEEL, AND 10544 05:48:36,720 --> 05:48:38,480 AGAIN, SOME OF THESE STRATEGIES 10545 05:48:38,480 --> 05:48:42,440 WILL BE DISCUSSED TOMORROW. 10546 05:48:42,440 --> 05:48:43,560 >>MATT? 10547 05:48:43,560 --> 05:48:45,720 >>GREAT TALK, RACHEL. 10548 05:48:45,720 --> 05:48:47,680 I WANTED TO GET YOU TO REFLECT A 10549 05:48:47,680 --> 05:48:51,640 LITTLE BIT MORE ON WHY THE ECHO 10550 05:48:51,640 --> 05:48:53,840 RETURN OF RESULTS POLICY IS ON 10551 05:48:53,840 --> 05:48:56,800 THE CONSERVATIVE SIDE. 10552 05:48:56,800 --> 05:49:00,920 AND YOU MENTIONED FEASIBILITY. 10553 05:49:00,920 --> 05:49:03,720 DO YOU THINK THAT IN YOUR 10554 05:49:03,720 --> 05:49:05,120 DELIBERATIONS, YOU HAD THE SORT 10555 05:49:05,120 --> 05:49:06,840 OF TWO-DIMENSIONAL GRAPH THAT 10556 05:49:06,840 --> 05:49:09,240 JEFF SHOWED WHICH IS SORT OF 10557 05:49:09,240 --> 05:49:12,360 VALUE ON ONE AXIS AND 10558 05:49:12,360 --> 05:49:13,280 FEASIBILITY ON THE OTHER, SO 10559 05:49:13,280 --> 05:49:14,160 THAT'S ONE QUESTION, OR WERE 10560 05:49:14,160 --> 05:49:16,080 THEY REALLY SORT OF INTERTWINED 10561 05:49:16,080 --> 05:49:16,760 IN A WAY YOU COULDN'T SEPARATE 10562 05:49:16,760 --> 05:49:17,520 THEM? 10563 05:49:17,520 --> 05:49:19,400 AND THE SECOND IS, HOW MUCH DO 10564 05:49:19,400 --> 05:49:22,200 YOU THINK IT'S BECAUSE ECHO HAS 10565 05:49:22,200 --> 05:49:25,680 BEEN REALLY A FEDERATION OF 10566 05:49:25,680 --> 05:49:26,600 COHORTS WITH DIFFERENT HISTORIES 10567 05:49:26,600 --> 05:49:27,480 AND CULTURES? 10568 05:49:27,480 --> 05:49:29,120 >>THAT'S A GREAT QUESTION. 10569 05:49:29,120 --> 05:49:36,080 I'LL TAKE THE FEDERATION 10570 05:49:36,080 --> 05:49:36,600 QUESTION FIRST. 10571 05:49:36,600 --> 05:49:39,240 I THINK PART OF IT MAY BE THE 10572 05:49:39,240 --> 05:49:40,880 FACT THAT THERE ARE A LOT OF 10573 05:49:40,880 --> 05:49:44,160 COHORTS WITHIN ECHO THAT WHEN 10574 05:49:44,160 --> 05:49:45,760 THEY BEGAN HADN'T REALLY DONE 10575 05:49:45,760 --> 05:49:47,200 THAT BEFORE, AND SO IT JUST 10576 05:49:47,200 --> 05:49:51,120 SEEMED LIKE A VERY TALL MOUNTAIN 10577 05:49:51,120 --> 05:49:53,200 TO CLIMB, ESPECIALLY IN A 10578 05:49:53,200 --> 05:49:54,080 SCENARIO WHERE PUTTING TOGETHER 10579 05:49:54,080 --> 05:49:56,600 A FEDERATION OF COHORTS AND 10580 05:49:56,600 --> 05:49:57,840 STARTING TO MERGE WHAT WE DO AT 10581 05:49:57,840 --> 05:49:59,640 THE SAME TIME, IT JUST SEEMED A 10582 05:49:59,640 --> 05:50:03,040 LITTLE OVERWHELMING. 10583 05:50:03,040 --> 05:50:05,720 SO -- AND I THINK IN THIS NEXT 10584 05:50:05,720 --> 05:50:06,840 PHASE, THERE WILL BE 10585 05:50:06,840 --> 05:50:10,000 OPPORTUNITIES, I THINK, TO KIND 10586 05:50:10,000 --> 05:50:13,120 OF TRANSCEND THAT CHALLENGE. 10587 05:50:13,120 --> 05:50:13,760 AND THE SECOND THING IS, I THINK 10588 05:50:13,760 --> 05:50:15,720 IT IS VERY HARD TO DISENTANGLE 10589 05:50:15,720 --> 05:50:19,960 THE VALUE AND FEASIBILITY THING 10590 05:50:19,960 --> 05:50:20,600 WHEN THERE'S ABSOLUTELY NO 10591 05:50:20,600 --> 05:50:21,440 ADDITIONAL RESOURCES TO DO 10592 05:50:21,440 --> 05:50:21,880 ANYTHING. 10593 05:50:21,880 --> 05:50:26,400 IT'S JUST REALLY HARD. 10594 05:50:26,400 --> 05:50:28,160 ESPECIALLY WHEN PEOPLE DON'T 10595 05:50:28,160 --> 05:50:29,120 FEEL LIKE THEY HAVE THE 10596 05:50:29,120 --> 05:50:30,360 EXPERTISE AND THEY'LL HAVE TO 10597 05:50:30,360 --> 05:50:32,520 SEEK IT ELSEWHERE, THEY'RE JUST 10598 05:50:32,520 --> 05:50:34,040 LIKE, IT'S NOT VALUABLE TO THE 10599 05:50:34,040 --> 05:50:34,640 PARTICIPANT BECAUSE WE CAN'T 10600 05:50:34,640 --> 05:50:41,480 MAKE IT VALUABLE. 10601 05:50:41,480 --> 05:50:44,640 >>KIND OF ALONG THOSE LINES, 10602 05:50:44,640 --> 05:50:48,200 RACHEL, WAS THERE ANY SORT OF 10603 05:50:48,200 --> 05:50:49,840 ASSESSMENT OF OR GUEST ESTIMATES 10604 05:50:49,840 --> 05:50:53,480 OF WHAT COSTS MIGHT BE FOR A 10605 05:50:53,480 --> 05:50:57,040 PARTICULAR ECHO STUDY RETURNING 10606 05:50:57,040 --> 05:50:58,160 A LOT OF DIFFERENT ENVIRONMENTAL 10607 05:50:58,160 --> 05:51:00,600 DATA OR KIND OF BREAKDOWN OF 10608 05:51:00,600 --> 05:51:02,680 WHAT SORTS OF ADDITIONAL 10609 05:51:02,680 --> 05:51:06,320 RESOURCES WOULD BE NEEDED, JUST 10610 05:51:06,320 --> 05:51:07,200 KIND OF THINKING ABOUT THE 10611 05:51:07,200 --> 05:51:10,480 FUTURE OF ECHO GOING FORWARD. 10612 05:51:10,480 --> 05:51:16,520 >>I WANT TO STEAL JULIE'S 10613 05:51:16,520 --> 05:51:18,240 THUNDER, BUT -- BECAUSE OF THE 10614 05:51:18,240 --> 05:51:24,200 OIF AND ALSO DERBI HAS -- SILENT 10615 05:51:24,200 --> 05:51:26,320 SPRING HAS REALLY WORKED TO MAKE 10616 05:51:26,320 --> 05:51:28,600 DERBI VERY ACCESSIBLE TO OTHER 10617 05:51:28,600 --> 05:51:29,440 PARTICIPANTS, AND I WOULD ALSO 10618 05:51:29,440 --> 05:51:33,040 ADD NIMBLE THE COSTS AT 10619 05:51:33,040 --> 05:51:34,960 LEAST FOR ENVIRONMENTAL HEALTH 10620 05:51:34,960 --> 05:51:37,000 DATA AND UTILIZING DERBY ARE 10621 05:51:37,000 --> 05:51:37,560 RELATIVELY LOW. 10622 05:51:37,560 --> 05:51:38,720 SO JULIE, DO YOU WANT TO SAY 10623 05:51:38,720 --> 05:51:39,640 SOMETHING ABOUT THAT? 10624 05:51:39,640 --> 05:51:46,720 >>YEAH, RIGHT NOW WE HAVE 10625 05:51:46,720 --> 05:51:48,440 CONTEXTUAL INFORMATION FOR ABOUT 10626 05:51:48,440 --> 05:51:53,240 150 CHEMICALS, MOSTLY ENDOCRINE 10627 05:51:53,240 --> 05:51:56,120 DISRUPTORS AN AND SOME METALS. 10628 05:51:56,120 --> 05:51:58,960 RIGHT NOW FOR A NEW STUDY THAT 10629 05:51:58,960 --> 05:52:02,760 DOESN'T -- THAT'S USING OUR 10630 05:52:02,760 --> 05:52:03,840 PLATFORM, YOU GET YOUR OWN 10631 05:52:03,840 --> 05:52:09,440 PRIVATE WORK SPACE FOR $5,000, 10632 05:52:09,440 --> 05:52:13,560 AND I'LL SHOW TOMORROW THE 10633 05:52:13,560 --> 05:52:14,480 RESEARCHER INTERFACE WHERE YOU 10634 05:52:14,480 --> 05:52:18,720 CAN UPLOAD YOUR DATA, YOU CAN 10635 05:52:18,720 --> 05:52:21,160 MATCH TO OUR LIBRARY, YOU CAN 10636 05:52:21,160 --> 05:52:22,960 CHOOSE OR MODIFY ALL THE CONTENT 10637 05:52:22,960 --> 05:52:25,920 SO YOU PICK YOUR OWN PHOTOS, YOU 10638 05:52:25,920 --> 05:52:28,960 CAN CHANGE THE TEXT IF YOU THINK 10639 05:52:28,960 --> 05:52:29,720 OUR PUERTO RICAN SPANISH IS NOT 10640 05:52:29,720 --> 05:52:34,000 WHAT YOU WANT, YOU CAN SWITCH TO 10641 05:52:34,000 --> 05:52:39,000 YOUR OWN VERSION. 10642 05:52:39,000 --> 05:52:41,120 AND YOU KNOW, WE'RE HAPPY TO 10643 05:52:41,120 --> 05:52:42,720 TALK TO ANY TEAMS WHO WANT TO 10644 05:52:42,720 --> 05:52:44,280 TRY IT. 10645 05:52:44,280 --> 05:52:45,640 AND THERE ARE SOME OTHER TEAMS 10646 05:52:45,640 --> 05:52:51,800 WHO ARE TRYING IT RIGHT NOW. 10647 05:52:51,800 --> 05:52:56,000 IS THAT HELPFUL? 10648 05:52:56,000 --> 05:52:57,160 >>SORRY, DID YOU HAVE A 10649 05:52:57,160 --> 05:52:57,600 QUESTION? 10650 05:52:57,600 --> 05:52:58,800 JOHNNYE? 10651 05:52:58,800 --> 05:53:01,760 >>THAT WAS A GREAT TALK AND 10652 05:53:01,760 --> 05:53:03,600 CHALLENGING TO BE THIS LATE 10653 05:53:03,600 --> 05:53:06,440 AFTER LUNCH, SO -- BUT I ALSO 10654 05:53:06,440 --> 05:53:08,960 WANTED TO KNOW IF YOU SAW 10655 05:53:08,960 --> 05:53:10,480 ANYTHING IN SOME OF THE IDEAS 10656 05:53:10,480 --> 05:53:13,440 THAT WERE DISCUSSED TODAY THAT 10657 05:53:13,440 --> 05:53:14,640 MIGHT ADDRESS SOME OF THAT 10658 05:53:14,640 --> 05:53:16,840 FEASIBILITY AND I'M THINKING 10659 05:53:16,840 --> 05:53:17,640 SOME OF THE THINGS THAT CAME UP 10660 05:53:17,640 --> 05:53:21,200 FROM THE PARTICIPANTS ABOUT 10661 05:53:21,200 --> 05:53:23,360 COMBINING OR BUILDING ON OTHER 10662 05:53:23,360 --> 05:53:26,720 PEOPLE'S WORK AND THINGS THAT 10663 05:53:26,720 --> 05:53:28,160 WERE INDIVIDUAL BUT NOT 10664 05:53:28,160 --> 05:53:29,280 NECESSARILY HAVING SOMEBODY GO 10665 05:53:29,280 --> 05:53:34,520 OUT TO EVERY DOOR. 10666 05:53:34,520 --> 05:53:36,120 BUT NOT NECESSARILY HAVING 10667 05:53:36,120 --> 05:53:36,720 SOMEBODY FROM THE TEAM GO TO 10668 05:53:36,720 --> 05:53:37,000 EVERY DOOR. 10669 05:53:37,000 --> 05:53:39,080 >>YEAH, I MEAN, I THINK THERE'S 10670 05:53:39,080 --> 05:53:39,320 SOME -- 10671 05:53:39,320 --> 05:53:40,920 >>TRANSITION. 10672 05:53:40,920 --> 05:53:41,520 >>SO AS PART OF OUR PROJECT 10673 05:53:41,520 --> 05:53:44,120 RIGHT NOW WITH THE TWO COHORTS, 10674 05:53:44,120 --> 05:53:46,400 ANOTHER PIECE OF IT IS WE HAVE 10675 05:53:46,400 --> 05:53:48,360 BEEN TRYING TO DO WORKSHOPS WITH 10676 05:53:48,360 --> 05:53:49,440 PARTICIPANTS WHO MIGHT BE 10677 05:53:49,440 --> 05:53:52,080 INTERESTED IN UTILIZING DERBY, 10678 05:53:52,080 --> 05:53:54,520 AND SO WE KIND OF PUT THAT ON 10679 05:53:54,520 --> 05:53:56,280 HIATUS WHILE PEOPLE WERE 10680 05:53:56,280 --> 05:53:59,880 FRANTICALLY REAPPLYING FOR ECHO 10681 05:53:59,880 --> 05:54:01,720 SO BASICALLY ENABLE PEOPLE TO 10682 05:54:01,720 --> 05:54:04,760 SEE HOW IT CAN BE USED WITH 10683 05:54:04,760 --> 05:54:07,840 THEIR OWN DATA. 10684 05:54:07,840 --> 05:54:12,920 SO I THINK THAT PRESENTS A WAY 10685 05:54:12,920 --> 05:54:13,760 TO DO THAT, AT LEAST FOR 10686 05:54:13,760 --> 05:54:14,600 ENVIRONMENTAL DATA, AND ADDRESS 10687 05:54:14,600 --> 05:54:15,600 SOME OF THE INTERESTING THINGS 10688 05:54:15,600 --> 05:54:17,680 THAT OUR PARTICIPANTS TALKED 10689 05:54:17,680 --> 05:54:24,880 ABOUT IN THE PANEL BEFORE LUNCH. 10690 05:54:24,880 --> 05:54:26,120 I GUESS THE OTHER PARTING THING 10691 05:54:26,120 --> 05:54:29,280 I WANT TO LEAVE YOU WITH AS YOU 10692 05:54:29,280 --> 05:54:29,880 THINK ABOUT TOMORROW IS I THINK 10693 05:54:29,880 --> 05:54:32,880 WE OFTEN FOCUS VERY MUCH ON THIS 10694 05:54:32,880 --> 05:54:33,760 TRANSACTIONAL RELATIONSHIP 10695 05:54:33,760 --> 05:54:35,120 BETWEEN PARTICIPANTS AND 10696 05:54:35,120 --> 05:54:36,440 SCIENTISTS, WHAT'S IN IT FOR THE 10697 05:54:36,440 --> 05:54:37,280 PARTICIPANTS, ARE THEY GOING TO 10698 05:54:37,280 --> 05:54:38,920 BE ABLE TO DO ANYTHING, ARE THEY 10699 05:54:38,920 --> 05:54:43,400 ABLE TO GET ANYTHING OUT IT? 10700 05:54:43,400 --> 05:54:47,800 PARTICIPANT ENGAGEMENT AND 10701 05:54:47,800 --> 05:54:49,520 REPORTBACK ENCOURAGES YOU TO 10702 05:54:49,520 --> 05:54:51,760 LOOK AT YOUR DATA IN WAYS YOU 10703 05:54:51,760 --> 05:54:52,680 OTHERWISE MIGHT NOT DO BECAUSE 10704 05:54:52,680 --> 05:54:54,520 YOU'RE DOING THOSE INDIVIDUAL 10705 05:54:54,520 --> 05:54:56,440 REPORTS, IT HELPS YOU SEE YOU 10706 05:54:56,440 --> 05:54:57,080 MIGHT NOT OTHERWISE SEE IN YOUR 10707 05:54:57,080 --> 05:54:57,360 DATA. 10708 05:54:57,360 --> 05:54:58,840 SO A GREAT EXAMPLE IS, YOU KNOW, 10709 05:54:58,840 --> 05:55:01,440 IN THE HOUSEHOLD EXPOSURE STUDY 10710 05:55:01,440 --> 05:55:02,280 IN CAPE COD, THERE WERE 10711 05:55:02,280 --> 05:55:06,000 PARTICIPANTS THAT HAD HIGH 10712 05:55:06,000 --> 05:55:08,960 LEVELS OF PCBs AND WE WERE 10713 05:55:08,960 --> 05:55:09,840 SCRATCHING OUR HEADS, WE WERE 10714 05:55:09,840 --> 05:55:11,080 TRYING TO FIGURE OUT WHERE IS 10715 05:55:11,080 --> 05:55:12,760 THIS STUFF COMING FROM? 10716 05:55:12,760 --> 05:55:13,480 IT WAS VERY NOTICEABLE. 10717 05:55:13,480 --> 05:55:14,640 WE WENT TO TALK TO THE 10718 05:55:14,640 --> 05:55:16,160 PARTICIPANTS. 10719 05:55:16,160 --> 05:55:18,200 AND IT LED TO THE DISCOVERY THAT 10720 05:55:18,200 --> 05:55:21,360 PCBs ARE EMBEDDED IN FLOOR 10721 05:55:21,360 --> 05:55:22,160 POLISH OF WOOD FLOORS, AND SO 10722 05:55:22,160 --> 05:55:24,800 WHEN PEOPLE SAND THEIR FLOORS, 10723 05:55:24,800 --> 05:55:26,200 PEOPLE GOT EXPOSED. 10724 05:55:26,200 --> 05:55:27,560 IT'S IN THE DUST IN THE AIR. 10725 05:55:27,560 --> 05:55:28,920 THAT'S SOMETHING THAT WOULD NOT 10726 05:55:28,920 --> 05:55:31,440 HAVE BEEN DISCOVERED WITHOUT 10727 05:55:31,440 --> 05:55:34,040 THAT MUTUAL EXCHANGE WITH 10728 05:55:34,040 --> 05:55:34,400 PARTICIPANTS. 10729 05:55:34,400 --> 05:55:36,680 IN FACT, DIALOGUE WITH YOUR 10730 05:55:36,680 --> 05:55:37,960 PARTICIPANTS THAT HELPS LEAD TO 10731 05:55:37,960 --> 05:55:39,160 DISCOVERIES IN YOUR DATA THAT 10732 05:55:39,160 --> 05:55:41,240 YOU MIGHT NOT OTHERWISE HAVE. 10733 05:55:41,240 --> 05:55:43,520 SO IT IS GOOD FOR THE SCIENTIFIC 10734 05:55:43,520 --> 05:55:44,320 ENTERPRISE, NOT JUST GREAT. 10735 05:55:44,320 --> 05:55:46,840 AND SO NOT THINKING OF IT AS A 10736 05:55:46,840 --> 05:55:50,160 ZERO SUM GAME RESOURCES FOR 10737 05:55:50,160 --> 05:55:50,920 REPORTBACK TAKE AWAY RESOURCES 10738 05:55:50,920 --> 05:55:52,360 FROM THE SCIENCE BUT THINKING 10739 05:55:52,360 --> 05:55:54,560 ABOUT IT MORE HOLISTICALLY. 10740 05:55:54,560 --> 05:55:56,400 GOOD FOR PARTICIPANTS, GOOD FOR 10741 05:55:56,400 --> 05:56:02,360 THE SCIENTIFIC ENTERPRISE. 10742 05:56:02,360 --> 05:56:03,840 >>THINKING ABOUT THE SIZE OF 10743 05:56:03,840 --> 05:56:05,160 ECHO AND THE NUMBER OF PEOPLE 10744 05:56:05,160 --> 05:56:07,120 INVOLVED, WAS THERE ANY 10745 05:56:07,120 --> 05:56:10,200 DISCUSSION ABOUT A SORT OF 10746 05:56:10,200 --> 05:56:12,480 TRANSITIONAL PLAN AT THIS POINT 10747 05:56:12,480 --> 05:56:15,560 WHERE THINGS START MAYBE NOT 10748 05:56:15,560 --> 05:56:16,640 QUITE WHERE THE PARTICIPANTS 10749 05:56:16,640 --> 05:56:20,120 WOULD LIKE TO SEE IT STARTING 10750 05:56:20,120 --> 05:56:21,800 BUT START MOVING AND YOU CAN 10751 05:56:21,800 --> 05:56:22,440 WORK TOWARDS THE -- 10752 05:56:22,440 --> 05:56:24,400 >>I'M A BIG FAN OF ITERATIVE 10753 05:56:24,400 --> 05:56:27,160 BABY STEP APPROACH, AND STARTING 10754 05:56:27,160 --> 05:56:29,080 WITH WHAT YOU KNOW WORKS, AND 10755 05:56:29,080 --> 05:56:31,600 THEN BUILDING ON THAT. 10756 05:56:31,600 --> 05:56:34,280 SO -- AND I WORRY A LITTLE BIT 10757 05:56:34,280 --> 05:56:36,440 ABOUT CENTRALIZATION AND 10758 05:56:36,440 --> 05:56:37,200 STANDARDIZATION IN REPORTBACK. 10759 05:56:37,200 --> 05:56:38,480 I THINK THAT'S REALLY PORCH WHEN 10760 05:56:38,480 --> 05:56:41,480 YOU'RE COLLECTING SAMPLES AND 10761 05:56:41,480 --> 05:56:43,320 ADMINISTERING QUESTIONNAIRE, BUT 10762 05:56:43,320 --> 05:56:44,520 WITH REPORTBACK, NOT SO MUCHMENT 10763 05:56:44,520 --> 05:56:45,840 I THINK YOU NEED SOMETHING -- 10764 05:56:45,840 --> 05:56:48,640 YOU NEED TOOLS THAT ARE NIMBLE 10765 05:56:48,640 --> 05:56:51,200 ENOUGH TO BE ADAPTED TO 10766 05:56:51,200 --> 05:56:52,920 DIFFERENT CONTEXTS, COMMUNITIES, 10767 05:56:52,920 --> 05:56:55,120 AS HAS BEEN REALLY ELOQUENTLY 10768 05:56:55,120 --> 05:56:57,400 DESCRIBED BY OTHERS MUCH MORE SO 10769 05:56:57,400 --> 05:56:59,360 THAN ME, AND SO I THINK IF WE 10770 05:56:59,360 --> 05:57:02,200 CAN START WITH AN ELEMENT, A 10771 05:57:02,200 --> 05:57:04,720 DATA ELEMENT FOR WHICH WE HAD 10772 05:57:04,720 --> 05:57:05,520 REALLY GOOD EVIDENCE THAT IT 10773 05:57:05,520 --> 05:57:06,800 WORKS AND IT DOESN'T NECESSARILY 10774 05:57:06,800 --> 05:57:09,120 HAVE TO BE AN ESSENTIAL DATA 10775 05:57:09,120 --> 05:57:11,200 ELEMENT IN ECHO, IT COULD BE ONE 10776 05:57:11,200 --> 05:57:12,280 THAT A LOT OF COHORTS ARE 10777 05:57:12,280 --> 05:57:13,600 ALREADY DOING FOR WHICH WE 10778 05:57:13,600 --> 05:57:14,320 ALREADY HAVE A LOT OF GOOD STUFF 10779 05:57:14,320 --> 05:57:16,680 AND I WOULD MAKE A PLUG FOR 10780 05:57:16,680 --> 05:57:18,080 ENVIRONMENTAL CHEMICAL 10781 05:57:18,080 --> 05:57:20,720 BIOMONITORRING AS A START. 10782 05:57:20,720 --> 05:57:22,040 AND THEN FIGURE OUT 10783 05:57:22,040 --> 05:57:23,160 STRATEGICALLY FOR THOSE COHORTS 10784 05:57:23,160 --> 05:57:26,920 THAT ARE COLLECTING THAT 10785 05:57:26,920 --> 05:57:27,520 INFORMATION, HOW DO WE SHARE A 10786 05:57:27,520 --> 05:57:29,280 TOOL THAT CAN BE ADAPTED TO THAT 10787 05:57:29,280 --> 05:57:29,800 CONTEXT? 10788 05:57:29,800 --> 05:57:35,240 AND THEN WE GO FROM THERE. 10789 05:57:35,240 --> 05:57:36,840 >>GREAT, THANK YOU, RACHEL. 10790 05:57:36,840 --> 05:57:39,240 SO NOW WE'LL TRANSITION TO OUR 10791 05:57:39,240 --> 05:57:49,600 DISCUSSANT, CARMEN. 10792 05:58:02,400 --> 05:58:02,920 >>GREETINGS TO ALL WHO ARE 10793 05:58:02,920 --> 05:58:05,200 HERE. 10794 05:58:05,200 --> 05:58:06,800 SHARING THIS KNOWLEDGE AND 10795 05:58:06,800 --> 05:58:07,760 EXPERIENCE ON THIS IMPORTANT 10796 05:58:07,760 --> 05:58:09,600 ASPECT OF RESEARCH SUCH AS 10797 05:58:09,600 --> 05:58:11,760 RETURNING RESULTS TO 10798 05:58:11,760 --> 05:58:12,520 PARTICIPANTS AS A RESPONSE TO 10799 05:58:12,520 --> 05:58:14,600 THE RIGHT TO KNOW. 10800 05:58:14,600 --> 05:58:16,520 GREETINGS TO ALL THAT ARE 10801 05:58:16,520 --> 05:58:17,280 CONNECTED TO THIS MEETING AND 10802 05:58:17,280 --> 05:58:18,720 THANK YOU FOR YOUR INTEREST. 10803 05:58:18,720 --> 05:58:20,040 WE HAVE JUST HAD THE PRIVILEGE 10804 05:58:20,040 --> 05:58:22,000 OF LISTENING TO FOUR VERY 10805 05:58:22,000 --> 05:58:23,080 RELEVANT AND IMPORTANT 10806 05:58:23,080 --> 05:58:24,280 PRESENTATIONS THAT ARE INTENDED 10807 05:58:24,280 --> 05:58:26,880 NOT TO QUESTION TO RETURN OR NOT 10808 05:58:26,880 --> 05:58:28,480 TO RETURN, BUT RATHER WHICH TYPE 10809 05:58:28,480 --> 05:58:30,440 OF RESEARCH RESULTS SHOULD BE 10810 05:58:30,440 --> 05:58:32,920 RETURNED AND WHY. 10811 05:58:32,920 --> 05:58:34,360 I UNDERSTAND THERE ARE SEVERAL 10812 05:58:34,360 --> 05:58:36,000 VERY IMPORTANT POINTS THAT HAVE 10813 05:58:36,000 --> 05:58:37,040 BEEN MADE IN THESE PRESENTATIONS 10814 05:58:37,040 --> 05:58:39,560 THAT REQUIRE FURTHER DIALOGUE 10815 05:58:39,560 --> 05:58:43,360 AND ESPECIALLY WORK TO ACTION. 10816 05:58:43,360 --> 05:58:44,160 FIRST IT IS NOT A MATTER OF 10817 05:58:44,160 --> 05:58:45,320 RETURNING OR NOT RETURNING. 10818 05:58:45,320 --> 05:58:47,400 OR IF IT CAN BE HELPFUL TO BOTH 10819 05:58:47,400 --> 05:58:49,680 THE PARTICIPANT AND THE RESEARCH 10820 05:58:49,680 --> 05:58:49,880 TEAM. 10821 05:58:49,880 --> 05:58:51,000 BUT RATHER WHICH ARE THE BEST 10822 05:58:51,000 --> 05:58:52,960 TYPES OF RESULTS TO RETURN THAT 10823 05:58:52,960 --> 05:58:55,480 RUND STANDABLE, USEFUL, AND 10824 05:58:55,480 --> 05:58:56,880 ACTIONABLE TO PARTICIPANTS 10825 05:58:56,880 --> 05:58:58,720 WITHOUT ADDING UNNECESSARY 10826 05:58:58,720 --> 05:59:02,320 STRESS OR BURDEN. 10827 05:59:02,320 --> 05:59:03,240 IN DR. BERKMAN'S PRESENTATION WE 10828 05:59:03,240 --> 05:59:04,520 HEARD NOT ALL RESEARCH STUDIES 10829 05:59:04,520 --> 05:59:05,440 HAVE TO RETURN RESEARCH 10830 05:59:05,440 --> 05:59:07,080 FINDINGS. 10831 05:59:07,080 --> 05:59:08,040 HERE THE DEPTH OF THE 10832 05:59:08,040 --> 05:59:09,040 RELATIONSHIP BETWEEN THE 10833 05:59:09,040 --> 05:59:12,720 RESEARCHER AND PARTICIPANTS IS 10834 05:59:12,720 --> 05:59:13,240 KEY. 10835 05:59:13,240 --> 05:59:15,000 IN HIS PRESENTATION, HE TALKS 10836 05:59:15,000 --> 05:59:18,400 ABOUT THE DIFFERENT VALUES THAT 10837 05:59:18,400 --> 05:59:19,760 ARE DIRECT OR INDIRECT AS 10838 05:59:19,760 --> 05:59:20,720 CONSIDERATION FOR REPORTBACK AND 10839 05:59:20,720 --> 05:59:22,360 THIS IS VERY IMPORTANT. 10840 05:59:22,360 --> 05:59:23,560 IN OUR EXPERIENCE IN OUR PROTECT 10841 05:59:23,560 --> 05:59:26,000 ECHO COHORT, PARTICIPANTS WANT 10842 05:59:26,000 --> 05:59:26,400 TO KNOW. 10843 05:59:26,400 --> 05:59:27,640 THEY WANT TO KNOW IF SOMETHING 10844 05:59:27,640 --> 05:59:29,920 IS NOT QUITE RIGHT, AND WHAT TO 10845 05:59:29,920 --> 05:59:32,240 DO, AS WELL AS WHEN RESULTS ARE 10846 05:59:32,240 --> 05:59:32,840 POSITIVE. 10847 05:59:32,840 --> 05:59:36,200 AS FOR EXAMPLE, IF MY CHILD IS 10848 05:59:36,200 --> 05:59:36,800 DEVELOPING WITHIN THE EXPECTED 10849 05:59:36,800 --> 05:59:38,720 PARAMETERS. 10850 05:59:38,720 --> 05:59:39,920 PEOPLE LIKE TO LISTEN TO GOOD 10851 05:59:39,920 --> 05:59:42,080 NEWS TOO. 10852 05:59:42,080 --> 05:59:43,640 IN THIS SENSE, THE VALUE OF 10853 05:59:43,640 --> 05:59:44,840 THE -- FOR THE PARTICIPANT CAN 10854 05:59:44,840 --> 05:59:47,240 BE FOR BOTH TYPES OF RESULTS. 10855 05:59:47,240 --> 05:59:50,160 WE HAVE HEARD RESULTS RETURNED 10856 05:59:50,160 --> 05:59:50,800 TO PARTICIPANTS WHO HAVE A CLEAR 10857 05:59:50,800 --> 05:59:52,400 AND ONGOING RELEVANCE TO HEALTH. 10858 05:59:52,400 --> 05:59:55,440 THIS IN MY OPINION IS VERY 10859 05:59:55,440 --> 05:59:56,040 IMPORTANT, IS A VERY IMPORTANT 10860 05:59:56,040 --> 05:59:56,840 POINT, BUT I BELIEVE THE 10861 05:59:56,840 --> 05:59:57,960 REPORTING BACK RESULTS THAT ARE 10862 05:59:57,960 --> 06:00:01,680 BEING INVESTIGATED AND HAVE 10863 06:00:01,680 --> 06:00:03,400 RESULTS THAT POINT TO POSSIBLE 10864 06:00:03,400 --> 06:00:04,400 BUT UNCERTAIN EEIVETLE ON HEALTH 10865 06:00:04,400 --> 06:00:06,320 ARE VALUABLE AS WELL. 10866 06:00:06,320 --> 06:00:07,680 PARTICIPANTS UNDERSTAND WHEN WE 10867 06:00:07,680 --> 06:00:09,240 EXPLAIN THERE IS NOT ENOUGH 10868 06:00:09,240 --> 06:00:13,400 RESEARCH TO SAY CATEGORICALLY 10869 06:00:13,400 --> 06:00:14,840 THE EFFECT -- OR THE EXACT 10870 06:00:14,840 --> 06:00:16,480 EFFECTS ON HEALTH, YET SEE THE 10871 06:00:16,480 --> 06:00:17,960 VALUE OF ALERTING THEM TO THE 10872 06:00:17,960 --> 06:00:19,200 POSSIBILITY. 10873 06:00:19,200 --> 06:00:21,040 I DO BELIEVE WE SOMETIMES 10874 06:00:21,040 --> 06:00:22,160 UNDERESTIMATE THE CAPACITY OF 10875 06:00:22,160 --> 06:00:24,800 PARTICIPANTS TO UNDERSTAND THESE 10876 06:00:24,800 --> 06:00:26,840 RESULTS, AND ESPECIALLY WHEN 10877 06:00:26,840 --> 06:00:28,720 THERE ARE UNCERTAIN EFFECTS. 10878 06:00:28,720 --> 06:00:30,840 AS JOHNNYE LEWIS SAID EARLIER, 10879 06:00:30,840 --> 06:00:32,000 PEOPLE DEAL WITH UNCERTAINTY BY 10880 06:00:32,000 --> 06:00:34,720 BEING VIGILANT. 10881 06:00:34,720 --> 06:00:37,320 THIS IS APPRECIATED BY THEM. 10882 06:00:37,320 --> 06:00:38,960 ANOTHER POINT IS THAT REPORTBACK 10883 06:00:38,960 --> 06:00:40,080 NEEDS TO BE ACCOMPANIED WITH 10884 06:00:40,080 --> 06:00:42,720 INFORMATION ON HOW TO UNDERSTAND 10885 06:00:42,720 --> 06:00:45,640 RESULTS, AND WHAT TO DO TO 10886 06:00:45,640 --> 06:00:46,720 REDUCE EXPOSURES OR TO MAKE 10887 06:00:46,720 --> 06:00:48,160 BEHAVIORAL CHANGE TO SUPPORT 10888 06:00:48,160 --> 06:00:50,640 HEALTH DEVELOPMENT -- HEALTHY 10889 06:00:50,640 --> 06:00:51,240 DEVELOPMENT. 10890 06:00:51,240 --> 06:00:52,760 THE CONTEXT OF THESE RESULTS IS 10891 06:00:52,760 --> 06:00:54,600 VITAL TO EFFECTIVE AND USEFUL 10892 06:00:54,600 --> 06:00:55,720 REPORTBACK. 10893 06:00:55,720 --> 06:00:57,320 IT IS ALSO OF GREAT IMPORTANCE 10894 06:00:57,320 --> 06:00:59,000 TO INVESTIGATE THE IMPACT OF 10895 06:00:59,000 --> 06:01:00,520 REPORT BACK ON THE PARTICIPANTS. 10896 06:01:00,520 --> 06:01:02,480 AND WHAT ARE THEIR EXPECTATIONS, 10897 06:01:02,480 --> 06:01:05,040 PREFERENCES AND INTERESTS IN 10898 06:01:05,040 --> 06:01:06,880 TERMS OF HOW, WHAT, WHEN, AND 10899 06:01:06,880 --> 06:01:07,760 WHO SHOULD PROVIDE THE 10900 06:01:07,760 --> 06:01:08,240 REPORTBACK. 10901 06:01:08,240 --> 06:01:11,280 IN OUR EXPERIENCE WITH OUR 10902 06:01:11,280 --> 06:01:13,800 PROTECT ECHO COHORT, WE BEGAN 10903 06:01:13,800 --> 06:01:14,880 WITH OUR COMMUNITY ENGAGEMENT 10904 06:01:14,880 --> 06:01:16,960 AND WE WERE LUCKY ENOUGH BECAUSE 10905 06:01:16,960 --> 06:01:20,040 OUR ORIGINAL COHORT IS THE SUPER 10906 06:01:20,040 --> 06:01:21,720 FUND RESEARCH PROGRAM AND THESE 10907 06:01:21,720 --> 06:01:23,760 PROGRAMS HAVE ENGAGEMENT CORE 10908 06:01:23,760 --> 06:01:24,960 AND RESEARCH TRANSLATION CORE, 10909 06:01:24,960 --> 06:01:26,520 SO THAT GAVE US A LOT OF THE 10910 06:01:26,520 --> 06:01:27,360 INFRASTRUCTURE THAT RACHEL WAS 10911 06:01:27,360 --> 06:01:28,400 TALKING ABOUT. 10912 06:01:28,400 --> 06:01:29,800 WE ALREADY HAD THE BASIS. 10913 06:01:29,800 --> 06:01:31,640 AND THAT'S REALLY IMPORTANT 10914 06:01:31,640 --> 06:01:32,240 BECAUSE IT'S EASY FOR ME TO 10915 06:01:32,240 --> 06:01:33,560 STAND HERE AND SAY OH, YOU 10916 06:01:33,560 --> 06:01:35,080 SHOULD DO THIS, BUT WITHOUT 10917 06:01:35,080 --> 06:01:37,400 HAVING THE ADVANTAGES THAT WE 10918 06:01:37,400 --> 06:01:38,360 HAVE WITH OUR COHORT. 10919 06:01:38,360 --> 06:01:43,600 SO I THINK THAT IS IMPORTANT TO 10920 06:01:43,600 --> 06:01:44,000 SAY. 10921 06:01:44,000 --> 06:01:46,280 SO WE DID THIS STUDY VERY EARLY 10922 06:01:46,280 --> 06:01:46,880 ON AND WE WERE ABLE TO FIGURE 10923 06:01:46,880 --> 06:01:47,680 OUT WAYS TO DO THIS. 10924 06:01:47,680 --> 06:01:50,320 WE ALSO TALKED ABOUT THE FORMATS 10925 06:01:50,320 --> 06:01:50,920 OF SUCH REPORTBACK. 10926 06:01:50,920 --> 06:01:52,520 AND WITH THE HELP OF SILENT 10927 06:01:52,520 --> 06:01:54,080 SPRING INSTITUTE, WE IMPLEMENTED 10928 06:01:54,080 --> 06:01:56,360 THE FIRST REPORTBACK APP ON A 10929 06:01:56,360 --> 06:01:58,880 MOBILE PHONE. 10930 06:01:58,880 --> 06:02:00,360 AND A MOBILE PHONE BECAUSE OUR 10931 06:02:00,360 --> 06:02:02,280 PARTICIPANT SAID WE DON'T HAVE 10932 06:02:02,280 --> 06:02:03,760 COMPUTER, WE NEED OUR RESULTS TO 10933 06:02:03,760 --> 06:02:06,600 BE AVAILABLE ON THE PHONE. 10934 06:02:06,600 --> 06:02:10,560 AND THIS WAS PART OF THE -- OF 10935 06:02:10,560 --> 06:02:11,720 THIS RELATIONSHIP. 10936 06:02:11,720 --> 06:02:14,280 THIS PROCESS IS CONTINUOUS, AND 10937 06:02:14,280 --> 06:02:15,480 WITH THE HELP OF OUR COMMUNITY 10938 06:02:15,480 --> 06:02:19,400 ADVISORY TEAM WHERE PARTICIPANTS 10939 06:02:19,400 --> 06:02:20,240 ARE REPRESENTED AS WELL AS 10940 06:02:20,240 --> 06:02:21,680 COMMUNITY COLLABORATORS, WE HAVE 10941 06:02:21,680 --> 06:02:23,120 BEEN ABLE TO CREATE A TOOL THAT 10942 06:02:23,120 --> 06:02:25,840 IS RESPONSIVE AND CULTURALLY 10943 06:02:25,840 --> 06:02:26,240 COMPETENT. 10944 06:02:26,240 --> 06:02:27,800 TO OUR PARTICIPANTS, IT'S ALWAYS 10945 06:02:27,800 --> 06:02:29,000 BEEN IMPORTANT TO RECEIVE THE 10946 06:02:29,000 --> 06:02:31,640 RESULTS AND TO HAVE A SAY ON HOW 10947 06:02:31,640 --> 06:02:32,640 THIS IS DONE. 10948 06:02:32,640 --> 06:02:34,400 THEY HAVE TOLD US EXPLICITLY NOT 10949 06:02:34,400 --> 06:02:37,600 ONLY THAT THEY WANT TO KNOW, BUT 10950 06:02:37,600 --> 06:02:38,880 HOW THEY WANT THIS INFORMATION 10951 06:02:38,880 --> 06:02:40,200 DELIVERED AND COMBINED WITH 10952 06:02:40,200 --> 06:02:41,640 SUGGESTIONS AS TO HOW TO CREATE 10953 06:02:41,640 --> 06:02:42,960 ACTION. 10954 06:02:42,960 --> 06:02:45,240 REPORTBACK IS A PROCESS, AND IN 10955 06:02:45,240 --> 06:02:46,640 MY OPINION CAN BENEFIT WITH 10956 06:02:46,640 --> 06:02:47,800 BEGINNING TO PROVIDE INFORMATION 10957 06:02:47,800 --> 06:02:50,800 TO PARTICIPANTS IN THE BEGINNING 10958 06:02:50,800 --> 06:02:52,960 OF THEIR PARTICIPATION. 10959 06:02:52,960 --> 06:02:54,080 ON WHAT THE SCIENTIFIC 10960 06:02:54,080 --> 06:02:55,440 LITERATURE IS SAYING, WHAT IS 10961 06:02:55,440 --> 06:02:58,760 THE EVIDENCE IN TERMS OF WHAT IS 10962 06:02:58,760 --> 06:02:59,680 BEING STUDIED, AS WELL AS 10963 06:02:59,680 --> 06:03:00,920 OFFERING INFORMATION ON 10964 06:03:00,920 --> 06:03:04,040 AGGREGATE RESULTS FROM PREVIOUS, 10965 06:03:04,040 --> 06:03:05,760 FROM RESULTS THAT ARE PREVIOUS 10966 06:03:05,760 --> 06:03:06,400 TO THE PARTICIPANTS ENTERING THE 10967 06:03:06,400 --> 06:03:07,360 PROGRAM. 10968 06:03:07,360 --> 06:03:08,920 IN ORDER TO INFORM ON WHAT IS 10969 06:03:08,920 --> 06:03:13,520 BEING STUDIED. 10970 06:03:13,520 --> 06:03:15,640 WHAT WE KNOW, AND WHAT CAN HELP 10971 06:03:15,640 --> 06:03:17,800 THEM EVEN BEFORE WE GIVE THEM 10972 06:03:17,800 --> 06:03:19,320 INDIVIDUAL REPORTBACK. 10973 06:03:19,320 --> 06:03:21,400 THAT, TO US, IS IMPORTANT. 10974 06:03:21,400 --> 06:03:22,480 WE CAN'T JUST SIT THERE AND NOT 10975 06:03:22,480 --> 06:03:23,640 SAY ANYTHING WHEN WE KNOW THERE 10976 06:03:23,640 --> 06:03:25,560 ARE THINGS -- WE ALREADY KNOW 10977 06:03:25,560 --> 06:03:26,680 THINGS. 10978 06:03:26,680 --> 06:03:27,360 SO IF WE KNOW THESE THINGS, THIS 10979 06:03:27,360 --> 06:03:28,440 IS SOMETHING THAT WE SHOULD BE 10980 06:03:28,440 --> 06:03:29,640 SHARING WITH OUR PARTICIPANTS AS 10981 06:03:29,640 --> 06:03:31,080 BEST WE CAN. 10982 06:03:31,080 --> 06:03:32,720 WE HAVE HEARD ABOUT THE EFFORT 10983 06:03:32,720 --> 06:03:34,000 THAT HAS BEEN IN PROGRESS WITH 10984 06:03:34,000 --> 06:03:35,120 THE ECHO RETURN OF RESULTS 10985 06:03:35,120 --> 06:03:37,120 WORKING GROUP, AND I APPLAUD 10986 06:03:37,120 --> 06:03:37,680 THIS INITIATIVE, AND BELIEVE 10987 06:03:37,680 --> 06:03:40,720 THIS WORK COULD BE HELPED 10988 06:03:40,720 --> 06:03:42,160 PERHAPS WITH THE REPRESENTATION 10989 06:03:42,160 --> 06:03:44,200 OF FIELD STAFF AND PARTICIPANTS 10990 06:03:44,200 --> 06:03:45,320 AS WELL AS COMMUNITY PARTNERS 10991 06:03:45,320 --> 06:03:46,320 INCLUDING PARTICIPANTS. 10992 06:03:46,320 --> 06:03:48,360 AND I KNOW THIS IS PART OF THE 10993 06:03:48,360 --> 06:03:50,560 FINDINGS OF THIS WORK GROUP. 10994 06:03:50,560 --> 06:03:52,120 THE FINDINGS AND RECOMMENDATIONS 10995 06:03:52,120 --> 06:03:55,600 OF THIS WORK GROUP SEEM TO ME 10996 06:03:55,600 --> 06:03:58,040 THE FOUNDATION OF A POLICY FOR 10997 06:03:58,040 --> 06:04:00,000 REPORTBACK FOR ECHO. 10998 06:04:00,000 --> 06:04:02,520 I ALSO HEARD AND AGREE WITH THE 10999 06:04:02,520 --> 06:04:03,520 RESULTS WITH RETURN OF RESULTS 11000 06:04:03,520 --> 06:04:05,280 WORK GROUP THAT RESEARCH 11001 06:04:05,280 --> 06:04:05,920 PROGRAMS NEED RESOURCES TO 11002 06:04:05,920 --> 06:04:06,800 DEVELOP INFRASTRUCTURE AND 11003 06:04:06,800 --> 06:04:09,520 CAPACITY TO OFFER REPORTBACK AND 11004 06:04:09,520 --> 06:04:09,760 FOLLOW-UP. 11005 06:04:09,760 --> 06:04:11,800 IN ORDER TO PROVIDE ADEQUATE 11006 06:04:11,800 --> 06:04:12,520 ATTENTION TO REPORTBACK, WE NEED 11007 06:04:12,520 --> 06:04:14,360 TO MAKE THIS AN INTEGRAL PART OF 11008 06:04:14,360 --> 06:04:16,800 THE PROGRAM WITH A SET OF POLICY 11009 06:04:16,800 --> 06:04:17,480 AND PRACTICES AS WELL AS A 11010 06:04:17,480 --> 06:04:18,760 DEDICATED TIME AND EFFORT OF 11011 06:04:18,760 --> 06:04:21,960 STAFF TO DO SO. 11012 06:04:21,960 --> 06:04:23,240 A VERY IMPORTANT FINDING AND 11013 06:04:23,240 --> 06:04:24,600 RECOMMENDATION POINTS TO THE 11014 06:04:24,600 --> 06:04:25,440 NEED TO BUILD CAPACITY FOR 11015 06:04:25,440 --> 06:04:26,680 RESEARCHERS AND RESEARCH STAFF 11016 06:04:26,680 --> 06:04:29,400 TO BE ABLE TO ENGAGE 11017 06:04:29,400 --> 06:04:30,680 PARTICIPANTS WITH REPORTBACK, 11018 06:04:30,680 --> 06:04:32,040 WHERE THE PROGRAM STAFF HAVE 11019 06:04:32,040 --> 06:04:33,760 RESOURCES TO REFER TO 11020 06:04:33,760 --> 06:04:34,680 APPROPRIATE FOLLOW-UP ON 11021 06:04:34,680 --> 06:04:37,520 FINDINGS. 11022 06:04:37,520 --> 06:04:38,400 AS YOU CANNOT JUST GO THERE AND 11023 06:04:38,400 --> 06:04:39,600 GIVE THEM BAD NEWS IF YOU DON'T 11024 06:04:39,600 --> 06:04:42,920 HAVE ALTERNATIVES TO THEM, TELL 11025 06:04:42,920 --> 06:04:44,200 THEM YOUR CHILD IS DELAYED IF 11026 06:04:44,200 --> 06:04:45,560 YOU DON'T HAVE INFORMATION IN 11027 06:04:45,560 --> 06:04:47,600 TERMS OF WHAT THEY CAN DO TO 11028 06:04:47,600 --> 06:04:49,200 IMPROVE OR WHERE THEY CAN GO TO 11029 06:04:49,200 --> 06:04:50,600 GET HELP. 11030 06:04:50,600 --> 06:04:52,440 THERE IS AN AMAZING POTENTIAL TO 11031 06:04:52,440 --> 06:04:53,840 DO SIGNIFICANT RELEVANT WORK TO 11032 06:04:53,840 --> 06:04:56,400 DEMONSTRATE THE IMPORTANCE AND 11033 06:04:56,400 --> 06:04:57,360 VALUE OF REPORTBACK IN ECHO. 11034 06:04:57,360 --> 06:04:58,440 I THINK THIS IS JUST THE 11035 06:04:58,440 --> 06:05:01,120 BEGINNING AND WE HAVE A WAY TO 11036 06:05:01,120 --> 06:05:01,560 GO. 11037 06:05:01,560 --> 06:05:03,640 FOR THIS WORK -- FOR THIS, WE 11038 06:05:03,640 --> 06:05:04,640 MUST WORK ON. 11039 06:05:04,640 --> 06:05:13,040 SO THANK YOU VERY MUCH. 11040 06:05:13,040 --> 06:05:14,120 >>THANK YOU, CARMEN. 11041 06:05:14,120 --> 06:05:15,720 IF WE COULD HAVE THE SESSION 11042 06:05:15,720 --> 06:05:17,240 3 SPEAKERS JOIN US UP HERE AT 11043 06:05:17,240 --> 06:05:21,960 THE PANEL TABLE. 11044 06:05:21,960 --> 06:05:23,040 CARMEN? 11045 06:05:23,040 --> 06:05:23,640 YOU CAN STAY UP HERE WITH THE 11046 06:05:23,640 --> 06:05:33,840 SPEAKERS. 11047 06:05:52,080 --> 06:05:52,560 ALL RIGHT. 11048 06:05:52,560 --> 06:05:54,240 WE WILL NOW OPEN IT UP FOR OPEN 11049 06:05:54,240 --> 06:06:00,360 DISCUSSION. 11050 06:06:00,360 --> 06:06:00,560 MATT? 11051 06:06:00,560 --> 06:06:07,200 >>LET ME OPEN THIS UP WITH I'M 11052 06:06:07,200 --> 06:06:10,720 A FORMER PRIMARY CARE DOC. 11053 06:06:10,720 --> 06:06:11,480 BUT WHY ALL THIS TALK ABOUT 11054 06:06:11,480 --> 06:06:13,600 CLINICAL UTILITY AND GETTING 11055 06:06:13,600 --> 06:06:16,120 CLINICIANS INVOLVED, WHEN WE'RE 11056 06:06:16,120 --> 06:06:17,160 TALKING ABOUT PUBLIC HEALTH 11057 06:06:17,160 --> 06:06:20,040 INFORMATION? 11058 06:06:20,040 --> 06:06:22,480 AND WHAT ABOUT THIS IDEA OF THE 11059 06:06:22,480 --> 06:06:27,960 ENVIRONMENTAL COUNSELOR AS THE 11060 06:06:27,960 --> 06:06:28,560 ANALOGY TO THE GENETIC 11061 06:06:28,560 --> 06:06:30,600 COUNSELOR? 11062 06:06:30,600 --> 06:06:32,120 SO ARE WE BARKING UP THE WRONG 11063 06:06:32,120 --> 06:06:33,880 TREE WHEN WE'RE TRYING TO HAVE 11064 06:06:33,880 --> 06:06:38,120 THE CLINICIAN BE THE TRANS A 11065 06:06:38,120 --> 06:06:42,960 LITRANSLATORCOMMUNICATOR AND SHE 11066 06:06:42,960 --> 06:06:46,640 THINKING ABOUT SO SOME OTHER AVE 11067 06:06:46,640 --> 06:06:48,080 FOR EPIDEMIOLOGIC STUDIES THAT 11068 06:06:48,080 --> 06:06:49,840 ARE IN GENERAL POPULATIONS WHERE 11069 06:06:49,840 --> 06:06:51,080 THE THINGS THAT WE DISCOVER ARE 11070 06:06:51,080 --> 06:06:53,680 NOT REALLY MEDICAL. 11071 06:06:53,680 --> 06:06:55,000 SOME OF THEM MIGHT BE MEDICAL 11072 06:06:55,000 --> 06:06:56,360 BUT MOST OF THEM AREN'T. 11073 06:06:56,360 --> 06:06:59,200 AND THIS IS A QUESTION THAT WE 11074 06:06:59,200 --> 06:07:02,680 MIGHT ASK TOMORROW TOO, BUT 11075 06:07:02,680 --> 06:07:09,800 BEGIN THE DISCUSSION HERE. 11076 06:07:09,800 --> 06:07:10,920 >>WELL, I THINK PART OF WHY WE 11077 06:07:10,920 --> 06:07:12,040 KEEP SAYING CLINICAL UTILITY IS 11078 06:07:12,040 --> 06:07:14,840 THAT A LOT OF THIS DEBATE HAS 11079 06:07:14,840 --> 06:07:16,040 COME OUT OF THE GENETIC RETURN 11080 06:07:16,040 --> 06:07:19,000 OF RESULTS LITERATURE WHERE THAT 11081 06:07:19,000 --> 06:07:20,760 HAS BEEN ONE OF THE KEY ISSUES 11082 06:07:20,760 --> 06:07:22,520 AND DEFINITIONS AND WAYS TO 11083 06:07:22,520 --> 06:07:23,160 DISTINGUISH THE KINDS OF THINGS 11084 06:07:23,160 --> 06:07:24,160 WE SHOULD AND SHOULDN'T RETURN. 11085 06:07:24,160 --> 06:07:27,080 SO PART OF IT IS JUST A VESTIGE 11086 06:07:27,080 --> 06:07:29,920 OF THE EARLIER VERSIONS OF THIS 11087 06:07:29,920 --> 06:07:31,920 DEBATE BUT AS NEW METHODOLOGIES, 11088 06:07:31,920 --> 06:07:33,760 NEW KINDS OF RESEARCH TAKE ON 11089 06:07:33,760 --> 06:07:34,400 THIS RETURN OF RESULTS QUESTION, 11090 06:07:34,400 --> 06:07:35,760 YOU'RE RIGHT THAT THEY HAVE TO 11091 06:07:35,760 --> 06:07:37,800 REINVENT THE QUESTIONS IN THE 11092 06:07:37,800 --> 06:07:40,800 DEBATE, YOU CAN'T JUST PORT OVER 11093 06:07:40,800 --> 06:07:42,880 THE ORIGINAL WAYS OF THINKING. 11094 06:07:42,880 --> 06:07:44,960 BUT I DO THINK THERE'S SOME 11095 06:07:44,960 --> 06:07:46,840 UTILITY, AND SO AT LEAST FROM 11096 06:07:46,840 --> 06:07:50,280 MY -- I CAN'T SPEAK FOR EVERYONE 11097 06:07:50,280 --> 06:07:52,280 ELSE, BUT WHEN I SAY CLINICAL 11098 06:07:52,280 --> 06:07:52,920 UTILITY, I REALLY MEAN VALUE. 11099 06:07:52,920 --> 06:07:55,520 I REALLY MEAN WOULD BE USEFUL IN 11100 06:07:55,520 --> 06:07:58,880 SOME WAY TO THE PARTICIPANT. 11101 06:07:58,880 --> 06:07:59,880 SO SOMETIMES THAT'S GOING TO BE 11102 06:07:59,880 --> 06:08:00,880 CLINICAL VALUE, SOMETIMES THAT'S 11103 06:08:00,880 --> 06:08:05,000 GOING TO BE MORE OF A PREVENTIVE 11104 06:08:05,000 --> 06:08:05,560 VALUE, SOMETIMES IT WILL BE 11105 06:08:05,560 --> 06:08:06,360 ENVIRONMENTAL, A WAY TO AVOID 11106 06:08:06,360 --> 06:08:09,000 CERTAIN KINDS OF EXPOSURES. 11107 06:08:09,000 --> 06:08:11,960 THERE ARE LOTS OF WAYS -- I LUMP 11108 06:08:11,960 --> 06:08:13,480 THAT MAYBE WE NEED TO HAVE 11109 06:08:13,480 --> 06:08:14,920 DIFFERENT LANGUAGE AND BE MORE 11110 06:08:14,920 --> 06:08:17,040 PRECISE, BUT I LUMP ALL OF THAT 11111 06:08:17,040 --> 06:08:18,160 UNDER CLINICAL UTILITY IN THE 11112 06:08:18,160 --> 06:08:20,640 SENSE THAT IT CAN ALL POSITIVELY 11113 06:08:20,640 --> 06:08:24,320 IMPACT THE HEALTH OF THE 11114 06:08:24,320 --> 06:08:26,400 PARTICIPANTS, AND SO THAT'S THE 11115 06:08:26,400 --> 06:08:28,560 WAY I WAS USING THE TERM AND 11116 06:08:28,560 --> 06:08:29,520 JUST TO SPELL IT OUT A LITTLE 11117 06:08:29,520 --> 06:08:31,160 FURTHER, WHEN WE'RE TRYING TO 11118 06:08:31,160 --> 06:08:32,920 FIGURE OUT WHAT TO RETURN AND 11119 06:08:32,920 --> 06:08:35,640 WHAT NOT TO RETURN, THE MORE 11120 06:08:35,640 --> 06:08:37,680 DIRECT HELPFUL VALUE IT CAN 11121 06:08:37,680 --> 06:08:39,080 PROVIDE TO PARTICIPANTS, THE 11122 06:08:39,080 --> 06:08:41,360 STRONGER REASON THERE IS TO 11123 06:08:41,360 --> 06:08:49,680 RETURN IT. 11124 06:08:49,680 --> 06:08:52,120 >>ANYBODY ELSE WANT TO TACKLE 11125 06:08:52,120 --> 06:08:52,320 THAT? 11126 06:08:52,320 --> 06:08:53,240 I MEANT TO BE KIND OF 11127 06:08:53,240 --> 06:08:53,920 CONTROVERSIAL. 11128 06:08:53,920 --> 06:08:58,680 >>I MEAN, I THINK -- I MEAN, I 11129 06:08:58,680 --> 06:09:01,520 THINK IT'S A -- I THINK IT'S A 11130 06:09:01,520 --> 06:09:02,120 PROVOCATIVE IDEA. 11131 06:09:02,120 --> 06:09:04,760 I WONDER ABOUT, YOU KNOW, WHEN 11132 06:09:04,760 --> 06:09:06,280 WE'RE -- AND MAYBE WE COULD 11133 06:09:06,280 --> 06:09:07,120 CENTER IT AROUND AN EXAMPLE, BUT 11134 06:09:07,120 --> 06:09:09,560 I THINK THAT THE SYSTEM THROUGH 11135 06:09:09,560 --> 06:09:13,800 WHICH THE PARTICIPANT OR THE 11136 06:09:13,800 --> 06:09:17,160 INDIVIDUAL ACCESSES CHANGE OR 11137 06:09:17,160 --> 06:09:21,200 CONSIDERS HOW THEY MIGHT ALTER 11138 06:09:21,200 --> 06:09:22,680 WHATEVER THE ANTECEDENT IS 11139 06:09:22,680 --> 06:09:27,080 THAT'S CAUSING TO HAVE USE IS 11140 06:09:27,080 --> 06:09:29,000 FREQUENTLY THOUGHT OF IN MEDICAL 11141 06:09:29,000 --> 06:09:33,360 TERMINOLOGY. 11142 06:09:33,360 --> 06:09:35,320 SO I THINK IT EVEN REQUIRES JUST 11143 06:09:35,320 --> 06:09:37,280 A, PERHAPS, CREATION, AND I 11144 06:09:37,280 --> 06:09:39,880 THINK THIS IS MAYBE WHAT YOU'RE 11145 06:09:39,880 --> 06:09:42,040 PROPOSING, OF AN ENTIRELY NEW 11146 06:09:42,040 --> 06:09:44,160 FRAMEWORK, A DIFFERENT SYSTEM, 11147 06:09:44,160 --> 06:09:45,040 BECAUSE WE'RE SO USED TO 11148 06:09:45,040 --> 06:09:46,240 THINKING ABOUT CLINICAL AND 11149 06:09:46,240 --> 06:09:48,640 HEALTH OUTCOMES AS BEING IN THE 11150 06:09:48,640 --> 06:09:54,120 DOMAIN OF THE HEALTHCARE AND THE 11151 06:09:54,120 --> 06:09:54,720 MEDICAL SYSTEM. 11152 06:09:54,720 --> 06:09:58,040 >>NOTICE WE CALL IT HEALTHCARE 11153 06:09:58,040 --> 06:10:00,840 WHEN IT'S ACTUALLY MEDICAL CARE. 11154 06:10:00,840 --> 06:10:02,640 AND HEALTH IS -- MUCH OF HEALTH 11155 06:10:02,640 --> 06:10:03,720 IS OUTSIDE OF MEDICINE. 11156 06:10:03,720 --> 06:10:05,240 AND AGAIN, I CAN SAY THIS 11157 06:10:05,240 --> 06:10:11,480 BECAUSE I'M A DOC. 11158 06:10:11,480 --> 06:10:14,000 >>I MEAN, I THINK -- I COULDN'T 11159 06:10:14,000 --> 06:10:15,600 AGREE WITH WHAT YOU JUST SAID 11160 06:10:15,600 --> 06:10:16,000 MORE. 11161 06:10:16,000 --> 06:10:19,360 I MEAN, I THINK THAT AT LEAST IN 11162 06:10:19,360 --> 06:10:24,400 THE ENVIRONMENTAL HEALTH REALM, 11163 06:10:24,400 --> 06:10:25,680 MOST OF THE RESULTS WE RETURN 11164 06:10:25,680 --> 06:10:27,880 ARE NOT CLINICALLY RELEVANT. 11165 06:10:27,880 --> 06:10:28,680 WE DON'T KNOW WHAT THEIR 11166 06:10:28,680 --> 06:10:29,640 CLINICAL RELEVANCE IS, UNLESS 11167 06:10:29,640 --> 06:10:33,040 YOU'RE DEALING WITH SOMETHING 11168 06:10:33,040 --> 06:10:36,360 LIKE LEARD MA LEAD MAYBE OR THIR 11169 06:10:36,360 --> 06:10:37,320 WHICH WE HAVE A LOT OF EVIDENCE, 11170 06:10:37,320 --> 06:10:44,000 WE HAVE THINGS THAT WE COULD DO. 11171 06:10:44,000 --> 06:10:46,040 AND I THINK IF WE THINK MORE AS 11172 06:10:46,040 --> 06:10:49,200 PUBLIC HEALTH RESEARCHERS, THEN 11173 06:10:49,200 --> 06:10:53,760 I THINK THAT FREES UP OUR 11174 06:10:53,760 --> 06:10:55,560 IMAGINATION ABOUT THE ETHICS OF 11175 06:10:55,560 --> 06:10:56,160 REPORTBACK AND WHAT IS ETHICAL 11176 06:10:56,160 --> 06:11:01,400 TO PROVIDE TO PARTICIPANTS, AND 11177 06:11:01,400 --> 06:11:02,280 THE FACT THAT WHEN WE THINK 11178 06:11:02,280 --> 06:11:04,040 ABOUT POPULATION HEALTH, WE'RE 11179 06:11:04,040 --> 06:11:05,000 ALSO WILLING TO ACCEPT THE FACT 11180 06:11:05,000 --> 06:11:06,720 AND CONVEY TO PARTICIPANTS THAT 11181 06:11:06,720 --> 06:11:08,480 THERE ARE CERTAIN KINDS OF 11182 06:11:08,480 --> 06:11:09,920 EXPOSURES THAT THEY CAN'T DO 11183 06:11:09,920 --> 06:11:11,920 ANYTHING ABOUT AS INDIVIDUALS. 11184 06:11:11,920 --> 06:11:13,720 BULL -- AND THAT'S AN IMPORTANT 11185 06:11:13,720 --> 06:11:14,560 PUBLIC HEALTH ISSUE. 11186 06:11:14,560 --> 06:11:16,880 THAT'S WHAT PICK HEALTH IS ALL 11187 06:11:16,880 --> 06:11:17,080 ABOUT. 11188 06:11:17,080 --> 06:11:18,720 IT'S ABOUT STRUCTURAL CHANGE, 11189 06:11:18,720 --> 06:11:20,120 IT'S ABOUT ELEVATING 11190 06:11:20,120 --> 06:11:22,240 ENVIRONMENTAL HEALTH LITERACY SO 11191 06:11:22,240 --> 06:11:26,000 THAT PEOPLE COULD UNDERSTAND HOW 11192 06:11:26,000 --> 06:11:29,400 EXPOSURE REDUCTION CAN'T ALWAYS 11193 06:11:29,400 --> 06:11:30,800 JUST BE YOUR PERSONAL RISK 11194 06:11:30,800 --> 06:11:32,480 ASSESSMENT EVERY TIME YOU GO TO 11195 06:11:32,480 --> 06:11:33,720 THE GROCERY STORE OR THE 11196 06:11:33,720 --> 06:11:34,800 DRUGSTORE. 11197 06:11:34,800 --> 06:11:37,280 THAT IT IS ABOUT SOCIAL 11198 06:11:37,280 --> 06:11:42,120 DECISIONS AND THAT'S THAT'S 11199 06:11:42,120 --> 06:11:43,880 VALUABLE, AND THINK AN IMPORTANT 11200 06:11:43,880 --> 06:11:45,120 ETHICAL THING THAT WE NEED TO 11201 06:11:45,120 --> 06:11:46,760 CONSIDER WHEN WE DO REPORTBACK, 11202 06:11:46,760 --> 06:11:47,720 OPPORTUNITIES FOR INDIVIDUAL AND 11203 06:11:47,720 --> 06:11:48,200 COLLECTIVE ACTION. 11204 06:11:48,200 --> 06:11:51,680 >>AND I THINK IN YOUR -- YOU 11205 06:11:51,680 --> 06:11:53,720 HAVE A NICE GRAPHIC, RACHEL, 11206 06:11:53,720 --> 06:11:54,720 WHERE YOU'RE TALKING ABOUT 11207 06:11:54,720 --> 06:11:56,560 COMMUNITY ACTION FOR SOME KINDS 11208 06:11:56,560 --> 06:11:59,200 OF ENVIRONMENTAL INFLUENCES AND 11209 06:11:59,200 --> 06:12:00,640 INDIVIDUAL ACTION FOR OTHERS. 11210 06:12:00,640 --> 06:12:02,960 AND EVEN THE INDIVIDUAL ACTION 11211 06:12:02,960 --> 06:12:05,840 WAS NOT NECESSARILY MEDIATED 11212 06:12:05,840 --> 06:12:09,320 THROUGH A MEDICAL SYSTEM, RIGHT? 11213 06:12:09,320 --> 06:12:11,320 SO IT CAN BE INDIVIDUAL ACTION, 11214 06:12:11,320 --> 06:12:11,720 COMMUNITY ACTION. 11215 06:12:11,720 --> 06:12:13,520 SO, YOU KNOW, THE WAY I THINK 11216 06:12:13,520 --> 06:12:15,760 ABOUT IT IS, OKAY, BLOOD 11217 06:12:15,760 --> 06:12:17,080 PRESSURE, YEAH, WE HAVE SOME 11218 06:12:17,080 --> 06:12:17,960 CLINICAL NORMS IN BLOOD 11219 06:12:17,960 --> 06:12:20,880 PRESSURE, WE KNOW WHAT TO DO. 11220 06:12:20,880 --> 06:12:22,920 BMI, OKAY, WELL, WE HAVE SOME 11221 06:12:22,920 --> 06:12:24,120 CLINICAL RECOMMENDATIONS FOR 11222 06:12:24,120 --> 06:12:24,400 BMI. 11223 06:12:24,400 --> 06:12:30,920 WE'RE NOT THAT GREAT AT IT. 11224 06:12:30,920 --> 06:12:31,880 DEPRESSION AND ANXIETY, OKAY, 11225 06:12:31,880 --> 06:12:32,320 MAYBE. 11226 06:12:32,320 --> 06:12:33,640 BUT THEN WE GET TO SOME OF THE 11227 06:12:33,640 --> 06:12:34,600 THINGS THAT YOU'RE TALKING 11228 06:12:34,600 --> 06:12:38,040 ABOUT, WHETHER THEY BE TOXIC 11229 06:12:38,040 --> 06:12:39,280 ENVIRONMENT OR OTHER SCALES THAT 11230 06:12:39,280 --> 06:12:43,040 WE MEASURE, SO I JUST -- 11231 06:12:43,040 --> 06:12:44,480 ENCOURAGING US ALL TO THINK 11232 06:12:44,480 --> 06:12:46,960 ABOUT WHERE IS THE EFFECTOR ARM. 11233 06:12:46,960 --> 06:12:49,480 AND YOU'RE ALL POINTING OUT THAT 11234 06:12:49,480 --> 06:12:52,240 THERE NEEDS TO BE A REAL 11235 06:12:52,240 --> 06:12:53,640 CONSIDERATION OF FEASIBILITY AND 11236 06:12:53,640 --> 06:12:55,400 PART OF THAT FEASIBILITY IS THE 11237 06:12:55,400 --> 06:13:01,880 EFFECTOR. 11238 06:13:01,880 --> 06:13:04,960 >>JOHNNYE? 11239 06:13:04,960 --> 06:13:07,160 >>I GUESS I WOULD REALLY LIKE 11240 06:13:07,160 --> 06:13:08,240 TO SEE THE WHOLE DISCUSSION 11241 06:13:08,240 --> 06:13:16,280 FRAMED MUCH MOR MORE HOE L HOLI. 11242 06:13:16,280 --> 06:13:18,280 IF WE LOOK AT THE LARGEST GAPS 11243 06:13:18,280 --> 06:13:21,240 OF MEDICAL TRAINING IN THE 11244 06:13:21,240 --> 06:13:21,880 COUNTRY, FOR PROBABLY THE LAST 11245 06:13:21,880 --> 06:13:23,480 70 YEARS, THE MAIN GAP HAS BEEN 11246 06:13:23,480 --> 06:13:25,720 THERE IS NEVER ANYTHING INCLUDED 11247 06:13:25,720 --> 06:13:28,000 IN MEDICAL CURRICULA ON 11248 06:13:28,000 --> 06:13:29,200 ENVIRONMENTAL OR OCCUPATIONAL 11249 06:13:29,200 --> 06:13:30,320 EXPOSURES. 11250 06:13:30,320 --> 06:13:33,560 AND YET THOSE ACCOUNT FOR A LOT 11251 06:13:33,560 --> 06:13:36,160 OF AT LEAST COFACTORS OR 11252 06:13:36,160 --> 06:13:37,480 INTERACTIVE EFFECTS. 11253 06:13:37,480 --> 06:13:39,840 OR SENSITIVITY TO A LOT OF THE 11254 06:13:39,840 --> 06:13:43,880 OUTCOMES WE'RE TALKING ABOUT IN 11255 06:13:43,880 --> 06:13:44,720 THE GENOMICS ANALYSIS. 11256 06:13:44,720 --> 06:13:47,200 AND WE KEEP SEPARATING THOSE AND 11257 06:13:47,200 --> 06:13:49,160 WE KEEP -- I MEAN, THERE ARE 11258 06:13:49,160 --> 06:13:50,040 PEOPLE IN THIS ROOM WHO HAVE 11259 06:13:50,040 --> 06:13:52,440 BEEN PUBLISHING RETURN OF 11260 06:13:52,440 --> 06:13:57,680 RESULTS FOR ALMOST 30 YEARS AND 11261 06:13:57,680 --> 06:13:59,400 YET ALL WE'RE HEARING IS THAT 11262 06:13:59,400 --> 06:14:00,440 THE FIELD STARTED WITH GENOMICS. 11263 06:14:00,440 --> 06:14:02,160 I DON'T THINK THAT DOES ANYBODY 11264 06:14:02,160 --> 06:14:02,640 ANY BENEFIT. 11265 06:14:02,640 --> 06:14:05,960 I MEAN, I THINK WE HAVE TO LOOK 11266 06:14:05,960 --> 06:14:07,920 AT THIS MUCH MORE HOLISTICALLY 11267 06:14:07,920 --> 06:14:09,960 THAT THESE ARE INTERACTIONS AND 11268 06:14:09,960 --> 06:14:10,560 WHEN WE SAY THAT ENVIRONMENTAL 11269 06:14:10,560 --> 06:14:11,720 RESULTS ARE NOT ACTIONABLE, I 11270 06:14:11,720 --> 06:14:12,960 THINK THAT'S REALLY SELLING IT 11271 06:14:12,960 --> 06:14:14,120 SHORT. 11272 06:14:14,120 --> 06:14:17,200 IF WE'RE LOOKING AT -- EVEN WITH 11273 06:14:17,200 --> 06:14:18,800 CANCER, THE LIKELIHOOD THAT THIS 11274 06:14:18,800 --> 06:14:21,400 IS NOT A PURELY GENETIC 11275 06:14:21,400 --> 06:14:22,400 PHENOMENON BUT IT IS AN 11276 06:14:22,400 --> 06:14:22,680 INTERACTION. 11277 06:14:22,680 --> 06:14:23,840 SO YOU HAVE TO SEE BROTH SIDES 11278 06:14:23,840 --> 06:14:29,000 SEE BOTH SIDES OFTHAT EQUATION. 11279 06:14:29,000 --> 06:14:31,520 IT SEEMS TO ME TO REALLY MAKE 11280 06:14:31,520 --> 06:14:32,760 PROGRESS AND FLF PARTICIPANTS 11281 06:14:32,760 --> 06:14:34,960 ABOUT RISK IN A REALISTIC MANNER 11282 06:14:34,960 --> 06:14:36,040 THAT'S GOING TO BE UNDERSTOOD, 11283 06:14:36,040 --> 06:14:38,200 SO I'D BE WILLING TO BET THAT 11284 06:14:38,200 --> 06:14:39,560 OUR PARTICIPANTS HAVE A MUCH 11285 06:14:39,560 --> 06:14:41,200 MORE REALISTIC VIEW OF HEALTH 11286 06:14:41,200 --> 06:14:42,440 THAN A LOT OF THE RESEARCHERS 11287 06:14:42,440 --> 06:14:47,520 DO. 11288 06:14:47,520 --> 06:14:49,240 SO JUST THROWING THAT OUT THERE. 11289 06:14:49,240 --> 06:14:50,720 >>WE CAN TAKE THE EXAMPLE OF 11290 06:14:50,720 --> 06:14:52,560 SMOKING, RIGHT? 11291 06:14:52,560 --> 06:14:55,560 I MEAN, PEOPLE WHO SMOKE, 11292 06:14:55,560 --> 06:14:57,400 DOCTORS TELL THEM TO STOP 11293 06:14:57,400 --> 06:14:58,480 SMOKING, BUT WE KNOW THAT 11294 06:14:58,480 --> 06:15:00,640 SMOKING RATES DIDN'T GO DOWN 11295 06:15:00,640 --> 06:15:01,320 BECAUSE GAZILLIONS OF DOCTORS 11296 06:15:01,320 --> 06:15:02,480 WERE TELLING THEIR PATIENTS TO 11297 06:15:02,480 --> 06:15:05,960 STOP SMOKING, RIGHT? 11298 06:15:05,960 --> 06:15:07,720 SMOKING RATES WENT DOWN BECAUSE 11299 06:15:07,720 --> 06:15:10,160 OF STRUCTURAL COLLECTIVE POLICY 11300 06:15:10,160 --> 06:15:11,520 CHANGE AND ALL THESE THINGS THAT 11301 06:15:11,520 --> 06:15:15,920 WE DID TO SHIFT -- MAKE IT EASY 11302 06:15:15,920 --> 06:15:18,040 FOR PEOPLE TO CHANGE THEIR 11303 06:15:18,040 --> 06:15:21,360 BEHAVIORS. 11304 06:15:21,360 --> 06:15:23,240 >>I ALSO THINK THAT THE ACTION, 11305 06:15:23,240 --> 06:15:26,080 YOU KNOW, THE WHOLE PROCESS OF 11306 06:15:26,080 --> 06:15:27,280 REPORTBACK BUILDS ON THE TRUST 11307 06:15:27,280 --> 06:15:29,600 THAT PEOPLE HAVE IN RESEARCH. 11308 06:15:29,600 --> 06:15:31,840 I COME FROM A PLACE WHERE MANY 11309 06:15:31,840 --> 06:15:33,200 COMMUNITIES DO NOT TRUST 11310 06:15:33,200 --> 06:15:33,480 RESEARCHERS. 11311 06:15:33,480 --> 06:15:36,440 WE HAVE HAD RESEARCH COME IN AND 11312 06:15:36,440 --> 06:15:37,440 TEST AGENT ORANGE WITHOUT 11313 06:15:37,440 --> 06:15:39,040 TELLING US. 11314 06:15:39,040 --> 06:15:41,080 WE HAD MOST OF OUR WOMEN 11315 06:15:41,080 --> 06:15:42,280 STERILIZED AT ONE POINT IN TIME 11316 06:15:42,280 --> 06:15:44,480 WITHOUT THEM KNOWING, AND 11317 06:15:44,480 --> 06:15:46,840 WITHOUT HAVING INFORMED CONSENT. 11318 06:15:46,840 --> 06:15:49,120 SO THERE ARE SO MANY COMMUNITIES 11319 06:15:49,120 --> 06:15:53,080 IN OUR SPACES THAT HAVE NO TRUST 11320 06:15:53,080 --> 06:15:54,360 AND FOR GOOD REASON IN RESEARCH. 11321 06:15:54,360 --> 06:15:56,120 SO THIS IS AN OPPORTUNITY TO 11322 06:15:56,120 --> 06:15:58,040 BUILD ON THAT. 11323 06:15:58,040 --> 06:15:59,600 AND NOT ONLY BUILD ON THAT BUT 11324 06:15:59,600 --> 06:16:01,000 ALSO BUILD CAPACITY, AND I 11325 06:16:01,000 --> 06:16:05,640 WANTED TO TALK TO THAT BECAUSE 11326 06:16:05,640 --> 06:16:07,160 WE NEED TO BUILD CAPACITY TO BE 11327 06:16:07,160 --> 06:16:09,480 ABLE TO DO THIS BUT ALSO DOING 11328 06:16:09,480 --> 06:16:11,240 IT, WE BUILD CAPACITY. 11329 06:16:11,240 --> 06:16:12,440 ONE THING WE DO WITH NURSES IN 11330 06:16:12,440 --> 06:16:13,600 OUR PROJECT, IN OUR PROGRAM IS 11331 06:16:13,600 --> 06:16:15,720 THAT THEY ARE BEGINNING TO DO 11332 06:16:15,720 --> 06:16:17,760 REPORTBACK, AND THAT HAS DONE A 11333 06:16:17,760 --> 06:16:19,120 TREMENDOUS -- HAS HAD A 11334 06:16:19,120 --> 06:16:20,000 TREMENDOUS EFFECT NOT JUST ON 11335 06:16:20,000 --> 06:16:22,320 THE PARTICIPANT BUT ON OUR 11336 06:16:22,320 --> 06:16:23,880 STAFF, BECAUSE THEY FEEL MORE 11337 06:16:23,880 --> 06:16:24,720 EMPOWERED, THEY FEEL THAT 11338 06:16:24,720 --> 06:16:26,560 THEY'RE NOT JUST THERE TO ASK 11339 06:16:26,560 --> 06:16:28,560 ALL THESE GAZILLION QUESTIONS 11340 06:16:28,560 --> 06:16:29,440 AND TAKE ALL THESE SAMPLES FROM 11341 06:16:29,440 --> 06:16:32,080 PEOPLE, BUT THAT THEY KNOW 11342 06:16:32,080 --> 06:16:34,200 WHAT'S BEHIND THIS AND THEY CAN 11343 06:16:34,200 --> 06:16:34,800 TELL THEM THIS IS WHAT WE'RE 11344 06:16:34,800 --> 06:16:35,080 LOOKING AT. 11345 06:16:35,080 --> 06:16:36,640 AND WE MIGHT NOT KNOW RIGHT NOW, 11346 06:16:36,640 --> 06:16:39,560 BUT MAYBE SOMEDAY WE WILL. 11347 06:16:39,560 --> 06:16:41,160 AND THAT IN ITSELF AND THE 11348 06:16:41,160 --> 06:16:43,760 DEVELOPMENT OF MATERIALS TO 11349 06:16:43,760 --> 06:16:46,480 REDUCE EXPOSURES, TO PROMOTE 11350 06:16:46,480 --> 06:16:50,080 DEVELOPMENT, PUT US INTO A 11351 06:16:50,080 --> 06:16:50,960 HEALTH PROMOTION MODE AND I 11352 06:16:50,960 --> 06:16:52,280 THINK THAT THAT IS ONE OF THE 11353 06:16:52,280 --> 06:17:01,160 BIG VANGS OF THIS. 11354 06:17:01,160 --> 06:17:02,800 >>THIS HAS BEEN A GREAT 11355 06:17:02,800 --> 06:17:03,040 MORNING. 11356 06:17:03,040 --> 06:17:06,440 IN THE CONTEXT OF A CONTROLLED 11357 06:17:06,440 --> 06:17:08,520 CLINICAL TRIAL, DOUBLE BLIND 11358 06:17:08,520 --> 06:17:11,640 CLINICAL TRIAL, IN THE MIDDLE OF 11359 06:17:11,640 --> 06:17:15,040 THE TRIAL YOU FIND AN INDIVIDUAL 11360 06:17:15,040 --> 06:17:17,960 REPORT HAS TO BE CONVEYED TO A 11361 06:17:17,960 --> 06:17:19,080 PARTICIPANT, AND IF THAT 11362 06:17:19,080 --> 06:17:22,120 PARTICIPANT WANTS TO KNOW WHAT 11363 06:17:22,120 --> 06:17:23,720 HE OR SHE RECEIVED, WHICH GROUP 11364 06:17:23,720 --> 06:17:27,800 THAT HE OR SHE BELONGED TO, WHAT 11365 06:17:27,800 --> 06:17:29,920 ARE THE PARTICULAR APPLICATIONS 11366 06:17:29,920 --> 06:17:30,840 OF SUBJECTS TO REVIEW THAT TO 11367 06:17:30,840 --> 06:17:33,760 THE PARTICIPANT, AND WHAT ARE 11368 06:17:33,760 --> 06:17:36,800 THE RESEARCH RISKS OF DOING 11369 06:17:36,800 --> 06:17:38,280 THAT, BECAUSE IT'S SUPPOSED TO 11370 06:17:38,280 --> 06:17:39,200 BE UNTIL THE STUDY IS DONE, THE 11371 06:17:39,200 --> 06:17:42,880 BLINDING HAS TO BE MAINTAINED, 11372 06:17:42,880 --> 06:17:44,640 SO THERE'S THAT CONCERN THAT YOU 11373 06:17:44,640 --> 06:17:46,440 WOULD HAVE TO HANDLE THAT. 11374 06:17:46,440 --> 06:17:49,040 SO I WANTED TO KNOW WHAT ARE 11375 06:17:49,040 --> 06:17:49,400 YOUR THOUGHTS. 11376 06:17:49,400 --> 06:17:53,520 THANK YOU. 11377 06:17:53,520 --> 06:17:54,520 >>I MEAN, I THINK IT WOULD BE 11378 06:17:54,520 --> 06:17:55,840 VERY CONTEXT-DEPENDENT BUT THE 11379 06:17:55,840 --> 06:17:58,040 GENERAL RULE, AT LEAST TO MY 11380 06:17:58,040 --> 06:18:00,720 MIND, WOULD BE IF KNOWLEDGE 11381 06:18:00,720 --> 06:18:01,880 ABOUT WHETHER OR NOT THEY WERE 11382 06:18:01,880 --> 06:18:04,840 IN THE ACTIVE OR PLACEBO ARM WAS 11383 06:18:04,840 --> 06:18:07,160 DIRECTLY RELEVANT TO WHATEVER 11384 06:18:07,160 --> 06:18:08,520 HEALTH INFORMATION HAD BEEN 11385 06:18:08,520 --> 06:18:10,800 REVEALED OR SITUATION, THEN THEY 11386 06:18:10,800 --> 06:18:13,400 SHOULD CERTAINLY -- IF IT WAS A 11387 06:18:13,400 --> 06:18:14,960 QUESTION OF PATIENT SAFETY, YOU 11388 06:18:14,960 --> 06:18:16,920 ALWAYS BREAK THE BLIND. 11389 06:18:16,920 --> 06:18:18,400 BUT IF IT WAS JUST SOMETHING 11390 06:18:18,400 --> 06:18:20,040 THAT THEY WANTED TO KNOW, UNLESS 11391 06:18:20,040 --> 06:18:24,480 THERE WAS A STRONG CLINICAL 11392 06:18:24,480 --> 06:18:26,440 REASON, YOU GENERALLY DON'T 11393 06:18:26,440 --> 06:18:27,320 BREAK THE -- THEY ALWAYS HAVE 11394 06:18:27,320 --> 06:18:34,280 THE RIGHT TO WITHDRAW, AND 11395 06:18:34,280 --> 06:18:34,880 WITHDRAWING MAYBE INFORMATION 11396 06:18:34,880 --> 06:18:35,520 COULD BE REVEALED TO THEM, BUT 11397 06:18:35,520 --> 06:18:36,640 YOU KEEP ASKING ABOUT INTEGRITY 11398 06:18:36,640 --> 06:18:39,440 OF THE RESEARCH. 11399 06:18:39,440 --> 06:18:40,880 YOU CAN'T -- IF THERE'S AN 11400 06:18:40,880 --> 06:18:41,960 IMPORTANT REASON TO MAINTAIN A 11401 06:18:41,960 --> 06:18:44,200 BLIND, YOU CAN'T JUST BREAK IT 11402 06:18:44,200 --> 06:18:45,160 BECAUSE PEOPLE WANT IT, IF 11403 06:18:45,160 --> 06:18:55,560 THAT'S HOW THE STUDY IS 11404 06:18:56,440 --> 06:18:57,800 DESIGNED. 11405 06:18:57,800 --> 06:18:58,800 >>JEFF? 11406 06:18:58,800 --> 06:19:02,160 >>SO I WANTED TO FOLLOW UP ON 11407 06:19:02,160 --> 06:19:05,640 CARMEN'S IDEA ABOUT BUILDING 11408 06:19:05,640 --> 06:19:07,320 CAPACITY IN STAFF AND MAKING 11409 06:19:07,320 --> 06:19:08,520 THEM FEEL THEY'RE PART OF 11410 06:19:08,520 --> 06:19:10,760 SOMETHING BIGGER THAN JUST 11411 06:19:10,760 --> 06:19:11,160 COLLECTING DATA. 11412 06:19:11,160 --> 06:19:11,920 BECAUSE ONE OF THE CONCERNS WITH 11413 06:19:11,920 --> 06:19:15,920 RESOURCES IS THE -- RETURNING 11414 06:19:15,920 --> 06:19:18,040 CERTAIN TYPES OF RESULTS, YOU 11415 06:19:18,040 --> 06:19:19,720 NEED INDIVIDUAL SPECIAL SKILLS 11416 06:19:19,720 --> 06:19:20,200 TO BE ABLE TO DO THAT. 11417 06:19:20,200 --> 06:19:21,680 SO LIKE GENETIC COUNSELORS OR, 11418 06:19:21,680 --> 06:19:24,560 YOU KNOW, REPORTING BACK ON 11419 06:19:24,560 --> 06:19:26,240 MENTAL HEALTH OR, LIKE, CHILD 11420 06:19:26,240 --> 06:19:27,320 DEVELOPMENT CONDITIONS, BECAUSE 11421 06:19:27,320 --> 06:19:28,720 YOU WANT THEM TO BE ABLE TO 11422 06:19:28,720 --> 06:19:33,440 RESPOND TO QUESTIONS WHEN THERE 11423 06:19:33,440 --> 06:19:33,880 ARE FROM PARTICIPANTS. 11424 06:19:33,880 --> 06:19:35,680 IS THIS SOMETHING WE SHOULD BE 11425 06:19:35,680 --> 06:19:36,160 THINKING ABOUT, IS THIS 11426 06:19:36,160 --> 06:19:37,920 SOMETHING THAT CAN BE TRAINED, 11427 06:19:37,920 --> 06:19:38,480 CAN RESEARCH PERSONNEL BE 11428 06:19:38,480 --> 06:19:41,000 TRAINED IN A WAY TO DO SOME OF 11429 06:19:41,000 --> 06:19:43,120 THIS, TO ALLEVIATE SOME OF THE 11430 06:19:43,120 --> 06:19:44,440 RESOURCE NEEDS THAT WE'VE BEEN 11431 06:19:44,440 --> 06:19:45,120 TALKING ABOUT? 11432 06:19:45,120 --> 06:19:46,760 IS THAT SOMETHING THAT SHOULD BE 11433 06:19:46,760 --> 06:19:55,320 CONSIDERED? 11434 06:19:55,320 --> 06:19:57,760 >>I MEAN, I CAN TAKE A STAB AT 11435 06:19:57,760 --> 06:19:58,080 THAT. 11436 06:19:58,080 --> 06:20:00,280 IT'S AN AREA OF DEBATE IN THE 11437 06:20:00,280 --> 06:20:01,360 GENOMICS WORLD FOR SURE BECAUSE 11438 06:20:01,360 --> 06:20:03,960 THERE'S A HUGE SHORTAGE AND 11439 06:20:03,960 --> 06:20:05,040 THERE'S PROJECTED TO BE A 11440 06:20:05,040 --> 06:20:07,320 SHORTAGE OF GENOMICS 11441 06:20:07,320 --> 06:20:10,920 PROFESSIONALS FOR THE NEXT 11442 06:20:10,920 --> 06:20:11,280 COUPLE DECADES. 11443 06:20:11,280 --> 06:20:16,360 SO I THINK THAT YOU CAN'T -- I 11444 06:20:16,360 --> 06:20:17,680 THINK YOU CAN SIT IN A PLACE 11445 06:20:17,680 --> 06:20:19,680 WHERE YOU'RE WORRIED ABOUT 11446 06:20:19,680 --> 06:20:21,120 HAVING CAPACITY FOR A VERY, VERY 11447 06:20:21,120 --> 06:20:22,680 LONG TIME, OR YOU CAN TRY 11448 06:20:22,680 --> 06:20:27,360 DIFFERENT STRATEGIES TO RETURN 11449 06:20:27,360 --> 06:20:30,080 FINDINGS TO PEOPLE AND SEE HOW 11450 06:20:30,080 --> 06:20:34,240 THEY WORK, AND THE STUDIES I 11451 06:20:34,240 --> 06:20:36,360 SIGHTED WAS A RANDOMIZED STUDY 11452 06:20:36,360 --> 06:20:38,080 THAT A SET OF GENOMIC RESULTS 11453 06:20:38,080 --> 06:20:38,800 WERE RETURNED TO PEOPLE THROUGH 11454 06:20:38,800 --> 06:20:40,680 A WEB INTERFACE OR A GENETIC 11455 06:20:40,680 --> 06:20:45,080 COUNSELOR AND THOSE WERE NOT 11456 06:20:45,080 --> 06:20:45,320 INFERIOR. 11457 06:20:45,320 --> 06:20:48,280 SO THIS WAS EQUALLY -- THESE 11458 06:20:48,280 --> 06:20:49,560 WERE EQUALLY APPROPRIATE WAYS OF 11459 06:20:49,560 --> 06:20:54,920 RETURNING SOME OF THOSE RESULTS. 11460 06:20:54,920 --> 06:20:55,560 AND I THINK THAT'S THE KIND OF 11461 06:20:55,560 --> 06:21:01,680 DATA THAT ARE NEEDED PRECISELY 11462 06:21:01,680 --> 06:21:02,440 TO ANSWER THAT QUESTION. 11463 06:21:02,440 --> 06:21:05,760 SO YOU CAN HYPOTHESIZE THAT 11464 06:21:05,760 --> 06:21:06,560 COULD BE A WAY. 11465 06:21:06,560 --> 06:21:07,960 FROM MY PERSPECTIVE, TO MAKE 11466 06:21:07,960 --> 06:21:09,760 SURE YOU'RE EVALUATING OR 11467 06:21:09,760 --> 06:21:12,520 TESTING THAT HYPOTHESIS, AND 11468 06:21:12,520 --> 06:21:13,720 SEEING WHERE OR WHAT TYPES OF 11469 06:21:13,720 --> 06:21:14,720 PERSONNEL NEEDED IN ORDER TO 11470 06:21:14,720 --> 06:21:18,080 HAVE WHICH TYPES OF 11471 06:21:18,080 --> 06:21:19,120 COMMUNICATIONS WITH RESEARCH 11472 06:21:19,120 --> 06:21:24,200 PARTICIPANTS AND PATIENTS ALSO. 11473 06:21:24,200 --> 06:21:25,600 >>WHAT WE HAVE DONE, BECAUSE 11474 06:21:25,600 --> 06:21:27,440 AGAIN, I DON'T THINK THAT YOU 11475 06:21:27,440 --> 06:21:29,400 CAN IMPOSE ON PEOPLE THAT IS NOT 11476 06:21:29,400 --> 06:21:30,600 THEIR PREPARATION TO DO THIS, 11477 06:21:30,600 --> 06:21:33,720 BUT YOU CAN KNOW ENOUGH TO GIVE 11478 06:21:33,720 --> 06:21:34,720 THE BASIC INFORMATION AND HAVE 11479 06:21:34,720 --> 06:21:36,120 ON CALL PEOPLE THAT WILL ANSWER 11480 06:21:36,120 --> 06:21:37,440 THE DEEP QUESTIONS. 11481 06:21:37,440 --> 06:21:38,520 AND DO THE REFERRALS. 11482 06:21:38,520 --> 06:21:41,440 WE DON'T HAVE ENOUGH RESOURCES 11483 06:21:41,440 --> 06:21:42,920 TO HAVE A PEDIATRICIAN SITTING 11484 06:21:42,920 --> 06:21:44,680 THERE ALL DAY OR HAVE A 11485 06:21:44,680 --> 06:21:46,040 SPECIALIST, BUT WE DO HAVE 11486 06:21:46,040 --> 06:21:48,040 PEOPLE THAT ARE ON CALL. 11487 06:21:48,040 --> 06:21:50,880 AND AT ONE TIME WE EVEN HAD A 11488 06:21:50,880 --> 06:21:52,920 CHILD NEUROLOGIST JUST BECAUSE 11489 06:21:52,920 --> 06:21:53,920 IN PUERTO RICO THERE WERE HARDLY 11490 06:21:53,920 --> 06:21:55,520 ANY, AND BY THE TIME A PARENT 11491 06:21:55,520 --> 06:21:57,360 WOULD GET A CONSULT, IT WOULD BE 11492 06:21:57,360 --> 06:21:58,880 SIX MONTH DOWN THE ROAD. 11493 06:21:58,880 --> 06:22:02,440 AND THAT, YOU KNOW, IT'S NOT 11494 06:22:02,440 --> 06:22:03,040 OPTIMAL. 11495 06:22:03,040 --> 06:22:06,800 SO THAT'S SORT OF A WAY THAT WE 11496 06:22:06,800 --> 06:22:08,000 HAVE DONE THIS. 11497 06:22:08,000 --> 06:22:11,080 WE ARE BASED IN A SCHOOL OF 11498 06:22:11,080 --> 06:22:13,880 HEALTH SCIENCES WHERE THERE IS 11499 06:22:13,880 --> 06:22:16,040 PUBLIC HEALTH, THERE IS 11500 06:22:16,040 --> 06:22:17,920 MEDICINE, THERE IS PHARMACY, AND 11501 06:22:17,920 --> 06:22:19,680 WHETHER WE MAKE USE OF THOSE 11502 06:22:19,680 --> 06:22:22,080 RESOURCES, TO DO THIS, A 11503 06:22:22,080 --> 06:22:24,320 CLINICAL PSYCHOLOGIST, NOT 11504 06:22:24,320 --> 06:22:27,040 SITTING THERE, YOU KNOW, NOT ON 11505 06:22:27,040 --> 06:22:30,840 A FULL-TIME BASIS BUT ON A 11506 06:22:30,840 --> 06:22:31,520 CONSULTANT BASIS BECAUSE IT'S 11507 06:22:31,520 --> 06:22:32,480 NOT EVERYONE THAT'S GOING TO 11508 06:22:32,480 --> 06:22:33,800 NEED THIS. 11509 06:22:33,800 --> 06:22:36,640 PEOPLE THAT HAVE THESE RESULTS 11510 06:22:36,640 --> 06:22:42,240 THAT ARE OUT OF THE NORM. 11511 06:22:42,240 --> 06:22:43,400 I'M JUST TALKING ABOUT OUR 11512 06:22:43,400 --> 06:22:44,240 EXPERIENCE, A WAY WE'VE BEEN 11513 06:22:44,240 --> 06:22:45,240 ABLE TO PROVIDE THIS WITHOUT 11514 06:22:45,240 --> 06:22:49,600 HAVING ALL THE RESOURCES THAT IT 11515 06:22:49,600 --> 06:22:50,240 WOULD TAKE. 11516 06:22:50,240 --> 06:22:51,680 >>I JUST WANT TO MAKE A PLUG 11517 06:22:51,680 --> 06:22:55,680 FOR WHAT JULIE WAS TALKING ABOUT 11518 06:22:55,680 --> 06:22:57,240 AT THE INFO SESSIONS. 11519 06:22:57,240 --> 06:23:00,360 THOSE CAN WORK REALLY NICELY, 11520 06:23:00,360 --> 06:23:04,640 BECAUSE VERY OFTEN IT'S NICE FOR 11521 06:23:04,640 --> 06:23:06,360 PARTICIPANTS, PARTICIPANTS 11522 06:23:06,360 --> 06:23:06,920 ACTUALLY WANT TO LEARN ABOUT 11523 06:23:06,920 --> 06:23:07,640 EACH OTHER AND COME TOGETHER FOR 11524 06:23:07,640 --> 06:23:10,200 THOSE PARTICIPANTS THAT ARE 11525 06:23:10,200 --> 06:23:10,720 MOTIVATED TO DO THAT. 11526 06:23:10,720 --> 06:23:13,840 THAT'S AN INCREDIBLE 11527 06:23:13,840 --> 06:23:14,200 OPPORTUNITY. 11528 06:23:14,200 --> 06:23:15,600 YOU CAN TALK ABOUT THE AGGREGATE 11529 06:23:15,600 --> 06:23:18,560 RESULTS SO ONE THING THAT WE DID 11530 06:23:18,560 --> 06:23:22,720 AND WORKED WITH THE STUDY TO DO 11531 06:23:22,720 --> 06:23:23,880 IS THEY HAVE REGULAR COMMUNITY 11532 06:23:23,880 --> 06:23:25,080 MEETINGS WITH THEIR PARTICIPANTS 11533 06:23:25,080 --> 06:23:28,240 AND SO IN THIS ONE, THE 11534 06:23:28,240 --> 06:23:29,720 COMMUNITY MEETING WAS TO 11535 06:23:29,720 --> 06:23:30,720 REPORTING A GAT RESULTS AND 11536 06:23:30,720 --> 06:23:34,480 ANSWER QUESTIONS ABOUT AGGREGATE 11537 06:23:34,480 --> 06:23:37,360 RESULTS AND THEN MANY OF US MADE 11538 06:23:37,360 --> 06:23:41,360 OURSELVES AVAILABLE AFTER THE 11539 06:23:41,360 --> 06:23:43,040 LARGE SESSION TO HAVE INDIVIDUAL 11540 06:23:43,040 --> 06:23:43,800 CONSULTATION WITH PARTICIPANTS 11541 06:23:43,800 --> 06:23:44,680 ABOUT THEIR INDIVIDUAL RESULTS 11542 06:23:44,680 --> 06:23:48,920 RIGHT THERE ON THE SPOT. 11543 06:23:48,920 --> 06:23:49,640 SO PEOPLE CAME, THERE WAS FOOD, 11544 06:23:49,640 --> 06:23:50,320 THERE WAS CHILD CARE, AND WE 11545 06:23:50,320 --> 06:23:51,720 WERE ABLE TO JUST KIND OF DO IT 11546 06:23:51,720 --> 06:23:53,680 IN A LARGE GROUP AND IT WORKED 11547 06:23:53,680 --> 06:24:01,320 QUITE WELL. 11548 06:24:01,320 --> 06:24:03,960 GLL JEFF, DID YO 11549 06:24:03,960 --> 06:24:05,880 >>JEFF, DID YOU HAVE A QUESTION 11550 06:24:05,880 --> 06:24:06,120 EARLIER? 11551 06:24:06,120 --> 06:24:09,600 >>I THINK FOLKS HAVE TOUCHED ON 11552 06:24:09,600 --> 06:24:12,360 IT BUT ONE WAS FOR CARMEN, YOU 11553 06:24:12,360 --> 06:24:14,280 USED THE TERM REPORTBACK PRETTY 11554 06:24:14,280 --> 06:24:15,280 CONSISTENTLY AS OPPOSED TO 11555 06:24:15,280 --> 06:24:16,400 RETURN OF RESULTS. 11556 06:24:16,400 --> 06:24:17,920 I WONDER IF THERE'S A DIFFERENCE 11557 06:24:17,920 --> 06:24:18,120 THERE. 11558 06:24:18,120 --> 06:24:19,960 IS REPORTBACK -- DOES THAT 11559 06:24:19,960 --> 06:24:24,760 INCLUDE A BROADER SET OF REPORTS 11560 06:24:24,760 --> 06:24:25,280 THAN INDIVIDUAL RESULTS? 11561 06:24:25,280 --> 06:24:26,680 >>NOT REALLY. 11562 06:24:26,680 --> 06:24:30,200 THAT'S THE WAY I WAS TAUGHT BY 11563 06:24:30,200 --> 06:24:32,080 DR. PHIL BROWN AND JULIE BRODY. 11564 06:24:32,080 --> 06:24:33,880 I WAS TAUGHT TO CALL IT THAT 11565 06:24:33,880 --> 06:24:35,280 WAY, AND I CALLED IT THAT WAY 11566 06:24:35,280 --> 06:24:38,240 EVER SINCE. 11567 06:24:38,240 --> 06:24:40,120 AND PEOPLE KIND OF RELATE TO IT 11568 06:24:40,120 --> 06:24:41,360 BETTER, RETURN OF RESULTS SOUNDS 11569 06:24:41,360 --> 06:24:42,320 MORE SERIOUS. 11570 06:24:42,320 --> 06:24:45,720 >>WELL, REPORTBACK SOUNDS MORE 11571 06:24:45,720 --> 06:24:46,360 COLLABORATIVE ACTUALLY SO I KIND 11572 06:24:46,360 --> 06:24:47,560 OF LIKE THAT. 11573 06:24:47,560 --> 06:24:50,400 ANOTHER QUESTION THAT SORT OF 11574 06:24:50,400 --> 06:24:52,480 RELATES, IF YOU WERE TO DESIGN A 11575 06:24:52,480 --> 06:24:55,000 RESEARCH PROTOCOL IN WHICH YOU 11576 06:24:55,000 --> 06:24:56,640 SAID YOU WERE GOING TO EFFECTIVE 11577 06:24:56,640 --> 06:24:57,520 ENGAGE THE COMMUNITY AND YOU 11578 06:24:57,520 --> 06:24:59,720 WERE GOING TO RETURN RESULTS IN 11579 06:24:59,720 --> 06:25:02,240 AN EFFECTIVE MANNER WITH 11580 06:25:02,240 --> 06:25:05,760 SOPHISTICATED COMMUNICATION 11581 06:25:05,760 --> 06:25:06,680 TECHNIQUES, WHAT WOULD THAT TEAM 11582 06:25:06,680 --> 06:25:07,640 LOOK LIKE? 11583 06:25:07,640 --> 06:25:09,400 WHO OUGHT TO BE ON THAT RESEARCH 11584 06:25:09,400 --> 06:25:13,840 TEAM IN ORDER TO BE ABLE TO 11585 06:25:13,840 --> 06:25:16,400 SERVE THOSE FUNCTIONS? 11586 06:25:16,400 --> 06:25:18,880 >>I'M A BIG PROPONENT OF MAKING 11587 06:25:18,880 --> 06:25:19,600 SURE THAT YOU HAVE PROFESSIONAL 11588 06:25:19,600 --> 06:25:21,360 EXPERTISE IN ALL THE AREAS THAT 11589 06:25:21,360 --> 06:25:22,520 MATTER. 11590 06:25:22,520 --> 06:25:24,000 AND IN MY CASE, IT'S GET A 11591 06:25:24,000 --> 06:25:25,000 GRAPHIC DESIGNER OR GET AN 11592 06:25:25,000 --> 06:25:27,080 INFORMATION DESIGNER OR BOTH. 11593 06:25:27,080 --> 06:25:31,840 TOO OFTEN YOU SEE SCIENTISTS 11594 06:25:31,840 --> 06:25:32,920 TRYING TO DEVELOP GRAPHICS THAT 11595 06:25:32,920 --> 06:25:34,400 ARE KIND OF HOME GROWN AND MAYBE 11596 06:25:34,400 --> 06:25:36,760 THEY'RE NOT SO EFFECTIVE, AND WE 11597 06:25:36,760 --> 06:25:38,280 DO A DISSERVICE WHEN WE DON'T 11598 06:25:38,280 --> 06:25:39,840 INVEST IN THOSE PROFESSIONALS. 11599 06:25:39,840 --> 06:25:42,080 I HAVE SOME MODEST SKILLS OF MY 11600 06:25:42,080 --> 06:25:43,280 OWN BUT I ALWAYS WORK WITH 11601 06:25:43,280 --> 06:25:47,880 PROFESSIONAL DESIGNERS. 11602 06:25:47,880 --> 06:25:50,440 >>WE USE A LOT OF STUDENTS TOO. 11603 06:25:50,440 --> 06:25:52,360 WE HAVE STUDENTS DO PRACTICUMS 11604 06:25:52,360 --> 06:25:53,520 IN THE AREA OF COMMUNICATION. 11605 06:25:53,520 --> 06:25:57,920 WE HAVE SOMEONE THAT KNOWS ABOUT 11606 06:25:57,920 --> 06:25:58,520 HEALTH COMMUNICATION, HEALTH 11607 06:25:58,520 --> 06:26:00,360 EDUCATORS ARE REALLY IMPORTANT. 11608 06:26:00,360 --> 06:26:01,960 WE'RE IN A SCHOOL OF PUBLIC 11609 06:26:01,960 --> 06:26:06,000 HEALTH, SO OUT OF OUR STAFF IS 11610 06:26:06,000 --> 06:26:07,080 HEALTH EDUCATORS. 11611 06:26:07,080 --> 06:26:10,280 AND PEOPLE -- IN THE CASE OF 11612 06:26:10,280 --> 06:26:12,640 ECHO, WE NEED SOMEONE THAT KNOWS 11613 06:26:12,640 --> 06:26:13,400 ABOUT CHILD DEVELOPMENT, LIKE 11614 06:26:13,400 --> 06:26:14,600 CLINICAL PSYCHOLOGISTS, IN OUR 11615 06:26:14,600 --> 06:26:16,560 CASE, WE HAVE SOMEONE THAT'S A 11616 06:26:16,560 --> 06:26:18,440 PROFESSOR FROM UNIVERSITY AND 11617 06:26:18,440 --> 06:26:19,720 SHE COMES WITH OUR STUDENTS. 11618 06:26:19,720 --> 06:26:24,880 SO WE GET MORE FOR -- WE GET 11619 06:26:24,880 --> 06:26:25,360 MORE HELP. 11620 06:26:25,360 --> 06:26:27,520 THEY'RE ABLE NOT ONLY TO EXPLAIN 11621 06:26:27,520 --> 06:26:28,160 TO OUR PARTICIPANTS BUT ALSO TO 11622 06:26:28,160 --> 06:26:32,040 OUR STAFF WHAT THEY'RE DOING, 11623 06:26:32,040 --> 06:26:36,320 AND ON OUR TEAM, WE ALSO HAVE 11624 06:26:36,320 --> 06:26:36,680 PEDIATRICIANS. 11625 06:26:36,680 --> 06:26:37,560 I'M A SOCIAL WORKER, SO WE HAVE 11626 06:26:37,560 --> 06:26:38,240 SOCIAL WORKERS. 11627 06:26:38,240 --> 06:26:40,480 WE EVEN HAVE ENGINEERS THAT HELP 11628 06:26:40,480 --> 06:26:44,480 US. 11629 06:26:44,480 --> 06:26:45,560 AND PARTICULARLY SPECIALISTS IN 11630 06:26:45,560 --> 06:26:46,240 ENVIRONMENTAL HEALTH. 11631 06:26:46,240 --> 06:26:49,360 IT IMPORTANT TO BE ABLE TO 11632 06:26:49,360 --> 06:26:50,000 EXPLAIN THE PARTICULAR 11633 06:26:50,000 --> 06:26:52,280 INFORMATION THAT HAS TO DO WITH 11634 06:26:52,280 --> 06:26:58,400 THIS TYPE OF RESULTS. 11635 06:26:58,400 --> 06:27:00,720 >>I WOULD SAY FROM MY OWN 11636 06:27:00,720 --> 06:27:02,560 PERSPECTIVE, I'M IN THE SCHOOL 11637 06:27:02,560 --> 06:27:03,720 OF MEDICINE, BUT WE'VE RECENTLY 11638 06:27:03,720 --> 06:27:04,480 DISCOVERED THERE'S WHOLE 11639 06:27:04,480 --> 06:27:07,400 DEPARTMENTS OF COMMUNICATION ON 11640 06:27:07,400 --> 06:27:10,360 CAMPUS AND SOCIOLOGY AND HEALTH 11641 06:27:10,360 --> 06:27:10,920 POLICY, AND THESE PEOPLE ARE 11642 06:27:10,920 --> 06:27:12,320 ACTUALLY VERY EAGER TO WORK WITH 11643 06:27:12,320 --> 06:27:14,000 YOU, BECAUSE IT'S REALLY HARD 11644 06:27:14,000 --> 06:27:15,680 AND INTERESTING PROBLEMS FOR 11645 06:27:15,680 --> 06:27:16,240 THEM, YOU KNOW, THAT THEY 11646 06:27:16,240 --> 06:27:17,680 HAVEN'T HAD THE INVITATION TO 11647 06:27:17,680 --> 06:27:18,440 WORK ON. 11648 06:27:18,440 --> 06:27:20,680 SO I THINK THERE'S A REAL 11649 06:27:20,680 --> 06:27:21,680 OPPORTUNITY FOR MUCH MORE 11650 06:27:21,680 --> 06:27:24,000 DIVERSE COLLABORATION AMONG 11651 06:27:24,000 --> 06:27:24,680 INVESTIGATORS HERE THAN HAS BEEN 11652 06:27:24,680 --> 06:27:28,360 THE TRADITION. 11653 06:27:28,360 --> 06:27:30,600 >>I THINK I JUST WANT TO MAKE A 11654 06:27:30,600 --> 06:27:31,800 PITCH -- SORRY, I JUST PUSHED 11655 06:27:31,800 --> 06:27:33,880 THIS WEIRD BUTTON -- I ALSO WANT 11656 06:27:33,880 --> 06:27:35,440 TO MAKE A PITCH THAT IT'S GREAT 11657 06:27:35,440 --> 06:27:37,800 TO HAVE A SOCIAL SCIENTIST OR A 11658 06:27:37,800 --> 06:27:38,880 COMMUNITY PSYCHOLOGIST ON YOUR 11659 06:27:38,880 --> 06:27:42,840 TEAM THAT CAN REALLY HELP YOU 11660 06:27:42,840 --> 06:27:44,760 ALSO WITH EVALUATION AND 11661 06:27:44,760 --> 06:27:45,960 DEVELOPING INSTRUMENTS DO THAT. 11662 06:27:45,960 --> 06:27:51,040 ALSO THINKING ABOUT HOW PEOPLE 11663 06:27:51,040 --> 06:27:54,840 ARE HELPING YOU ASSESS TO WHICH 11664 06:27:54,840 --> 06:27:55,680 PEOPLE ARE UNDERSTANDING OR 11665 06:27:55,680 --> 06:27:56,440 INTERPRESENTING WHAT YOU'RE 11666 06:27:56,440 --> 06:28:00,800 TRYING TO CONVEY AND DEVELOP 11667 06:28:00,800 --> 06:28:02,520 GOOD PROTOCOLS TO ASSESS THE 11668 06:28:02,520 --> 06:28:03,560 DESIGN OF YOUR PRODUCT AND 11669 06:28:03,560 --> 06:28:08,320 WHETHER OR NOT IT'S WORKING. 11670 06:28:08,320 --> 06:28:09,640 SO I THINK THAT'S VERY 11671 06:28:09,640 --> 06:28:10,120 BENEFICIAL. 11672 06:28:10,120 --> 06:28:12,360 AND PEOPLE WHO SPECIALIZE IN 11673 06:28:12,360 --> 06:28:13,000 DATA VISUALIZATION CAN COME FROM 11674 06:28:13,000 --> 06:28:13,840 A VARIETY OF FIELDS. 11675 06:28:13,840 --> 06:28:16,840 WE THINK ABOUT THE RISE OF DATA 11676 06:28:16,840 --> 06:28:17,440 JOURNALISM THAT PEOPLE WHO ARE 11677 06:28:17,440 --> 06:28:18,560 TRYING TO LEVERAGE DATA TO 11678 06:28:18,560 --> 06:28:20,400 COMMUNICATE TO PEOPLE AND THE 11679 06:28:20,400 --> 06:28:22,840 PUBLIC AND UNDERSTAND DATA, SO I 11680 06:28:22,840 --> 06:28:24,240 THINK THERE'S A LOT OF EXPERTISE 11681 06:28:24,240 --> 06:28:28,240 OUT THERE THAT CAN BE HELPFUL 11682 06:28:28,240 --> 06:28:30,720 DEPENDING ON WHAT KIND OF 11683 06:28:30,720 --> 06:28:31,320 REPORTBACK YOU'RE STRIVING TO 11684 06:28:31,320 --> 06:28:39,720 DO. 11685 06:28:39,720 --> 06:28:42,160 >>I HAVE A QUESTION, ADRIANA, 11686 06:28:42,160 --> 06:28:45,160 IN YOUR PRESENTATION, YOU MADE A 11687 06:28:45,160 --> 06:28:49,280 DISTINCTION IN TERMS OF SORT OF 11688 06:28:49,280 --> 06:28:49,840 HIGHLIGHTING PRIEL OR 11689 06:28:49,840 --> 06:28:50,960 ADVERTISING KINDS OF RESULTS TO 11690 06:28:50,960 --> 06:28:54,840 RETURN ON THE BASIS OF THERE 11691 06:28:54,840 --> 06:28:55,720 BEING LIKE A POPULATION TO 11692 06:28:55,720 --> 06:29:01,080 COMPARE TO, AND I'M WONDERING -- 11693 06:29:01,080 --> 06:29:03,400 SO YOU -- AS ONE EXAMPLE, THE 11694 06:29:03,400 --> 06:29:04,120 PROMIS MEASURE, WITH HE ACTUALLY 11695 06:29:04,120 --> 06:29:09,440 WE ACTUALLY USETHOSE IN THE ECHD 11696 06:29:09,440 --> 06:29:10,520 YOU HAD ANOTHER EXAMPLE TOO. 11697 06:29:10,520 --> 06:29:11,960 I'M WONDERING, IS THERE SOME 11698 06:29:11,960 --> 06:29:14,000 SORT OF MINIMALLY ACCEPTABLE 11699 06:29:14,000 --> 06:29:15,560 NUMBER OF OTHER POINTS THAT YOU 11700 06:29:15,560 --> 06:29:18,680 WOULD WANT TO HAVE IN ORDER TO 11701 06:29:18,680 --> 06:29:22,280 COMPARE TO, IN ORDER TO USE IT, 11702 06:29:22,280 --> 06:29:24,120 YOU KNOW, EFFECTIVELY AND FOR TO 11703 06:29:24,120 --> 06:29:25,360 BE SOMETHING THAT YOU WOULD 11704 06:29:25,360 --> 06:29:28,080 PRIORITIZE ON THAT BASIS? 11705 06:29:28,080 --> 06:29:31,880 >>I DON'T THINK THERE'SNESS 11706 06:29:31,880 --> 06:29:35,040 SAIRLY ANY MINIMUM BECAUSE 11707 06:29:35,040 --> 06:29:36,480 THERE'S TIMES YOU CAN'T GIVE A 11708 06:29:36,480 --> 06:29:38,280 BENCHMARK, IT'S A NEW AREA, THIS 11709 06:29:38,280 --> 06:29:38,920 IS WHAT YOU HAVE AND PEOPLE CAN 11710 06:29:38,920 --> 06:29:42,240 DEAL WITH THE UNCERTAINTY. 11711 06:29:42,240 --> 06:29:45,360 BUT OFTENTIMES WE ARE LOOKING AT 11712 06:29:45,360 --> 06:29:45,920 SOMETHING LIKE DEPRESSION 11713 06:29:45,920 --> 06:29:46,240 SYMPTOMS. 11714 06:29:46,240 --> 06:29:48,560 THERE ARE NUMEROUS MEASURES TO 11715 06:29:48,560 --> 06:29:51,720 CHOOSE FROM, AND SO IF YOU ARE 11716 06:29:51,720 --> 06:29:55,040 TAKING IN REPORTBACK, RETURN OF 11717 06:29:55,040 --> 06:29:55,720 RESULTS, INTO ACCOUNT FROM THE 11718 06:29:55,720 --> 06:29:57,240 VERY BEGINNING, THEN THAT CAN 11719 06:29:57,240 --> 06:29:59,080 HELP YOUR DECISION-MAKING. 11720 06:29:59,080 --> 06:30:00,080 YOU KNOW WHAT, WE'RE GOING TO GO 11721 06:30:00,080 --> 06:30:02,040 WITH THIS PROMIS MEASURE BECAUSE 11722 06:30:02,040 --> 06:30:03,920 IT GIVES US SOMETHING THAT WE 11723 06:30:03,920 --> 06:30:04,880 CAN COMPARE OUR STUDY TO OTHERS 11724 06:30:04,880 --> 06:30:07,040 AND WE CAN GIVE PEOPLE SOME 11725 06:30:07,040 --> 06:30:17,440 CONTEXT FOR THAT RESULT. 11726 06:30:19,760 --> 06:30:21,160 >>MONICA. 11727 06:30:21,160 --> 06:30:21,960 >>I HAVE A QUESTION FOR THE 11728 06:30:21,960 --> 06:30:24,760 PANEL REGARDING -- SO RIGHT NOW, 11729 06:30:24,760 --> 06:30:28,600 YOU WERE TALKING TO REPORTBACK 11730 06:30:28,600 --> 06:30:29,160 TO PARTICIPANTS OF STUDIES, 11731 06:30:29,160 --> 06:30:30,200 WE'VE GONE THROUGH THE ACTION, 11732 06:30:30,200 --> 06:30:31,240 INDIVIDUAL AND COLLECTIVE 11733 06:30:31,240 --> 06:30:33,000 ACTION, AND SO I'M WONDERING 11734 06:30:33,000 --> 06:30:36,040 WHAT THE PANEL THINKS ABOUT 11735 06:30:36,040 --> 06:30:37,280 REPORTING BACK TO OTHER 11736 06:30:37,280 --> 06:30:38,760 STAKEHOLDERS WHO MIGHT HAVE -- 11737 06:30:38,760 --> 06:30:39,520 BECAUSE IN A WAY, IF YOU'RE 11738 06:30:39,520 --> 06:30:41,280 REPORTING BACK TO INDIVIDUAL, 11739 06:30:41,280 --> 06:30:43,920 THE BURDEN OF PROOF IS PLACED ON 11740 06:30:43,920 --> 06:30:44,520 THE GENERAL PUBLIC BECAUSE WE 11741 06:30:44,520 --> 06:30:45,920 DON'T NECESSARILY OPERATE UNDER 11742 06:30:45,920 --> 06:30:47,120 THE PRECAUTIONARY PRINCIPLE SO 11743 06:30:47,120 --> 06:30:48,880 THEN YOU'RE PUTTING THAT -- SO 11744 06:30:48,880 --> 06:30:50,160 I'M WONDERING IN JUST ASKING THE 11745 06:30:50,160 --> 06:30:51,160 PANEL, WHO ELSE SHOULD BE 11746 06:30:51,160 --> 06:30:54,120 RECEIVING THIS TYPE OF DATA AND 11747 06:30:54,120 --> 06:30:54,960 HOW SHOULD IT BE COMMUNICATED 11748 06:30:54,960 --> 06:30:58,600 BACK AND WHAT MIGHT THAT LOOK 11749 06:30:58,600 --> 06:31:00,600 LIKE IF WE'RE TRYING TO ACHIEVE 11750 06:31:00,600 --> 06:31:01,120 STRUCTURAL CHANGE WITH THE 11751 06:31:01,120 --> 06:31:03,040 FINDINGS OF THESE PROJECTS? 11752 06:31:03,040 --> 06:31:04,440 >>I WANT TO SAY IN OUR 11753 06:31:04,440 --> 06:31:06,240 EXPERIENCE, WE DO AT LEAST ONCE 11754 06:31:06,240 --> 06:31:08,560 A YEAR SOMETIMES TWICE A YEAR, 11755 06:31:08,560 --> 06:31:11,040 WE MEET WITH THE PEDIATRICIAN PS 11756 06:31:11,040 --> 06:31:12,480 OF THE STUDY AREA. 11757 06:31:12,480 --> 06:31:13,080 WE HAVE THE COOPERATION OF ONE 11758 06:31:13,080 --> 06:31:16,760 OF THE HOSPITALS, THEY LOAN US 11759 06:31:16,760 --> 06:31:21,320 THEIR BIG MEETING SPACE, AND WE 11760 06:31:21,320 --> 06:31:21,960 DO LIKE AGGREGATE REPORTBACK TO 11761 06:31:21,960 --> 06:31:22,560 THEM. 11762 06:31:22,560 --> 06:31:24,200 WE LET THEM KNOW WHAT WE HAVE 11763 06:31:24,200 --> 06:31:27,000 FOUND, AND YOU KNOW, WHAT ARE 11764 06:31:27,000 --> 06:31:27,360 OUR SUGGESTIONS. 11765 06:31:27,360 --> 06:31:28,000 WE LISTEN TO THEM IN TERMS OF 11766 06:31:28,000 --> 06:31:31,200 HOW THEY THINK WE CAN IMPROVE 11767 06:31:31,200 --> 06:31:33,000 RECRUITMENT OR WHAT WE'RE DOING. 11768 06:31:33,000 --> 06:31:35,160 WE ALSO DO A TOUR TO ALL THE 11769 06:31:35,160 --> 06:31:35,840 COMMUNITY HEALTH CENTERS. 11770 06:31:35,840 --> 06:31:38,720 WE WORK WITH FEDERALLY QUALIFIED 11771 06:31:38,720 --> 06:31:39,640 COMMUNITY HEALTH CENTERS. 11772 06:31:39,640 --> 06:31:41,040 THIS IS WHERE WE DO OUR 11773 06:31:41,040 --> 06:31:43,120 RECRUITMENT AND A LOT OF OUR 11774 06:31:43,120 --> 06:31:43,400 FOLLOW-UP. 11775 06:31:43,400 --> 06:31:44,560 SO WE GO TO EACH ONE OF THOSE 11776 06:31:44,560 --> 06:31:45,680 CLINICS AND WE TELL THEM, THIS 11777 06:31:45,680 --> 06:31:48,160 IS WHAT WE'VE BEEN FINDING. 11778 06:31:48,160 --> 06:31:49,800 AND OFFER OUR SERVICES IN TERMS 11779 06:31:49,800 --> 06:31:51,560 OF PROVIDING INFORMATION TO 11780 06:31:51,560 --> 06:31:52,880 THEIR STAFF, HELPING THEM WHEN 11781 06:31:52,880 --> 06:31:55,520 THEY HAVE HEALTH FAIRS, SO WE 11782 06:31:55,520 --> 06:31:56,160 DEVELOP MATERIALS SO WE CAN GO 11783 06:31:56,160 --> 06:31:57,760 WITH THEM TO DIFFERENT 11784 06:31:57,760 --> 06:31:58,120 COMMUNITIES. 11785 06:31:58,120 --> 06:31:59,600 WE HAVE BEEN ABLE TO SUPPORT 11786 06:31:59,600 --> 06:32:01,680 THEM, FOR EXAMPLE, WHEN WE'VE 11787 06:32:01,680 --> 06:32:03,320 HAD ONE OF THE MANY HURRICANES 11788 06:32:03,320 --> 06:32:04,520 AND CRISES THAT WE'VE HAD. 11789 06:32:04,520 --> 06:32:05,960 WE HELP THEM GO TO THE COMMUNITY 11790 06:32:05,960 --> 06:32:08,440 AND ESPECIALLY WHEN THERE ARE 11791 06:32:08,440 --> 06:32:10,200 THINGS RELATED TO CLEAN WATER OR 11792 06:32:10,200 --> 06:32:12,280 SAFE WATER AND THINGS LIKE THAT. 11793 06:32:12,280 --> 06:32:18,360 SO IT'S SORT OF LIKE A MUTUAL 11794 06:32:18,360 --> 06:32:19,480 RELATIONSHIP BUT THEY REALLY 11795 06:32:19,480 --> 06:32:20,440 APPRECIATE A LOT THE FACT THAT 11796 06:32:20,440 --> 06:32:22,240 WE COME BACK WITH THE RESULTS, 11797 06:32:22,240 --> 06:32:22,880 THAT THEY CAN DO SOMETHING WITH 11798 06:32:22,880 --> 06:32:23,040 IT. 11799 06:32:23,040 --> 06:32:28,120 THEY CAN EDUCATE THEIR STAFF AND 11800 06:32:28,120 --> 06:32:29,160 AT THE SAME TIME THEIR STAFF CAN 11801 06:32:29,160 --> 06:32:32,440 EDUCATE THE PATIENTS. 11802 06:32:32,440 --> 06:32:33,960 >>CAN I JUST ADD, I THINK 11803 06:32:33,960 --> 06:32:37,000 THAT'S A GREAT QUESTION AND IF I 11804 06:32:37,000 --> 06:32:39,400 WAS A RESEARCH -- I WOULD THINK 11805 06:32:39,400 --> 06:32:41,160 CREATIVELY AND EXPANSIVELY ABOUT 11806 06:32:41,160 --> 06:32:42,600 EVERY STAKEHOLDER I COULD TALK 11807 06:32:42,600 --> 06:32:44,080 TO. 11808 06:32:44,080 --> 06:32:46,080 THINK ABOUT IT NOT JUST IN TERMS 11809 06:32:46,080 --> 06:32:46,880 OF TALKING TO PARTICIPANTS AND 11810 06:32:46,880 --> 06:32:51,640 THE RESEARCH ACTING ALONE BUT 11811 06:32:51,640 --> 06:32:53,960 ACTUALLY IN CONCERT, BECAUSE I 11812 06:32:53,960 --> 06:32:54,800 THINK THAT'S GOING TO BE THE 11813 06:32:54,800 --> 06:32:57,240 MOST POWERFUL COMBINATION FOR 11814 06:32:57,240 --> 06:32:59,920 CHANGE, SO SOME CONTAMINATED 11815 06:32:59,920 --> 06:33:01,120 WATER SUPPLY, YOU FIND ALL THE 11816 06:33:01,120 --> 06:33:02,120 RELEVANT GOVERNMENT OFFICIALS 11817 06:33:02,120 --> 06:33:06,160 AND STAKEHOLDERS AND MEDIA, THE 11818 06:33:06,160 --> 06:33:06,760 RESEARCH TEAM SHOULD BE TALKING 11819 06:33:06,760 --> 06:33:08,960 TO ALL OF THEM AND THEN THEY 11820 06:33:08,960 --> 06:33:10,120 SHOULD TALK TO THE PARTICIPANTS 11821 06:33:10,120 --> 06:33:11,920 ABOUT ALSO TALKING TO THEM SORT 11822 06:33:11,920 --> 06:33:18,400 OF AS A COMBINED COORDINATED 11823 06:33:18,400 --> 06:33:19,040 PRESSURE CAMPAIGN AND I THINK 11824 06:33:19,040 --> 06:33:20,040 THAT'S GOING TO BE THE MOST 11825 06:33:20,040 --> 06:33:25,280 LIKELY TO ACTUALLY MAKE CHANGE. 11826 06:33:25,280 --> 06:33:27,680 >>MONICA, JUST AS A RESPONSE, I 11827 06:33:27,680 --> 06:33:32,120 LIKE WHAT BEN SAID, AS A 11828 06:33:32,120 --> 06:33:34,320 PROGRAM, ECHO PRIORITIZES 11829 06:33:34,320 --> 06:33:38,000 SOLUTION ORIENTED FRAMEWORKS, 11830 06:33:38,000 --> 06:33:42,680 AND WE HAVE OUR SYSTEMS AND 11831 06:33:42,680 --> 06:33:44,560 PROCESSES FOR STAKEHOLDER 11832 06:33:44,560 --> 06:33:45,600 ENGAGEMENT ON THE FRONT END TO 11833 06:33:45,600 --> 06:33:46,840 FIGURE OUT WHAT ARE THE SALIENT 11834 06:33:46,840 --> 06:33:48,720 RESEARCH QUESTIONS THAT COULD 11835 06:33:48,720 --> 06:33:49,600 LEAD TO ACTION, AND ON THE BACK 11836 06:33:49,600 --> 06:33:53,440 ENDS, ON DISSEMINATION OF 11837 06:33:53,440 --> 06:33:56,800 RESEARCH FINDINGS TO 11838 06:33:56,800 --> 06:33:57,560 STAKEHOLDERS. 11839 06:33:57,560 --> 06:33:58,640 AND WE DO THAT AT A NATIONAL 11840 06:33:58,640 --> 06:33:59,720 LEVEL THROUGH STAKEHOLDER 11841 06:33:59,720 --> 06:34:01,080 ORGANIZATIONS AND THEN AS CARMEN 11842 06:34:01,080 --> 06:34:04,560 IS SAYING, COHORTS HAVE DONE IT 11843 06:34:04,560 --> 06:34:08,280 ON LOCAL LEVELS TOO. 11844 06:34:08,280 --> 06:34:09,680 BUT I DON'T THINK WE'VE TACKLED 11845 06:34:09,680 --> 06:34:12,000 THE HOW DO YOU INTEGRATE 11846 06:34:12,000 --> 06:34:12,600 REPORTBACK TO PARTICIPANTS FOR 11847 06:34:12,600 --> 06:34:14,920 THEIR INDIVIDUAL RESULTS WITH 11848 06:34:14,920 --> 06:34:16,360 REPORTING TO STAKEHOLDERS FOR 11849 06:34:16,360 --> 06:34:18,720 AGGREGATE RESULTS. 11850 06:34:18,720 --> 06:34:19,240 WHICH IS MAYBE WHERE YOUR 11851 06:34:19,240 --> 06:34:26,200 QUESTION IS GOING. 11852 06:34:26,200 --> 06:34:29,320 >>WELL, THERE ARE SOME EXAMPLES 11853 06:34:29,320 --> 06:34:30,440 OF THAT. 11854 06:34:30,440 --> 06:34:32,120 -- HAS PUBLISHED ABOUT 11855 06:34:32,120 --> 06:34:35,040 REPORTING BACK TO WATER 11856 06:34:35,040 --> 06:34:38,080 SUPPLIERS AND TO INDIVIDUALS. 11857 06:34:38,080 --> 06:34:39,600 ONE THING I THINK IS SO EXCITING 11858 06:34:39,600 --> 06:34:41,760 IS TO SEE OUR PARTICIPANTS TAKE 11859 06:34:41,760 --> 06:34:51,400 THEIR RESULTS TO THEIR ELECTED 11860 06:34:51,400 --> 06:34:52,000 OFFICIALS. 11861 06:34:52,000 --> 06:34:52,920 I THINK THIS CONVERSATION ABOUT 11862 06:34:52,920 --> 06:34:55,040 WHETHER WE SHOULD HAVE 11863 06:34:55,040 --> 06:34:55,600 ENVIRONMENTAL COUNSELORS IS 11864 06:34:55,600 --> 06:34:58,720 MAKING ME THINK ABOUT PUBLIC 11865 06:34:58,720 --> 06:34:59,560 HEALTH INFRASTRUCTURE, WHICH WE 11866 06:34:59,560 --> 06:35:02,720 ALL KNOW IS NOT THE STRENGTH OF 11867 06:35:02,720 --> 06:35:08,640 THE UNITED STATES, BUT MANY OF 11868 06:35:08,640 --> 06:35:10,520 THESE RESULTS WOULD BE 11869 06:35:10,520 --> 06:35:12,320 ACTIONABLE BY LOCAL HEALTH 11870 06:35:12,320 --> 06:35:13,320 DEPARTMENTS OR STATE HEALTH 11871 06:35:13,320 --> 06:35:23,360 DEPARTMENTS. 11872 06:35:23,360 --> 06:35:23,960 >>AN ADDITIONAL THING IS VERY 11873 06:35:23,960 --> 06:35:24,880 OFTEN WE DEVELOP MASSIVE 11874 06:35:24,880 --> 06:35:28,400 DATASETS RELATED TO EXPOSURE 11875 06:35:28,400 --> 06:35:30,960 THAT'S OFTEN SPATIAL, FOR 11876 06:35:30,960 --> 06:35:34,120 EXAMPLE. 11877 06:35:34,120 --> 06:35:36,000 AND WE CAN, I THINK, LEVERAGE 11878 06:35:36,000 --> 06:35:40,120 THOSE DATA AND INTEGRATE THEM IN 11879 06:35:40,120 --> 06:35:43,520 WAYS THAT -- TO ALSO DEVELOP 11880 06:35:43,520 --> 06:35:44,920 ONLINE TOOLS FOR DIVERSE END 11881 06:35:44,920 --> 06:35:45,480 USERS. 11882 06:35:45,480 --> 06:35:49,640 SO AN EXAMPLE IS, WE HAVE A 11883 06:35:49,640 --> 06:35:51,960 COMMUNITY ENGAGEMENT CORE AT 11884 06:35:51,960 --> 06:35:56,400 BERKELEY'S SUPERFUND SITE, AND 11885 06:35:56,400 --> 06:35:58,040 WE WERE TRYING TO REALLY 11886 06:35:58,040 --> 06:35:59,480 UNDERSTAND VARIABILITY IN 11887 06:35:59,480 --> 06:36:00,560 DRINKING WATER QUALITY, BOTH IN 11888 06:36:00,560 --> 06:36:01,760 COMMUNITY WATER SYSTEMS ACROSS 11889 06:36:01,760 --> 06:36:05,240 THE STATE AND AMONG DOMESTIC 11890 06:36:05,240 --> 06:36:06,880 WELL HOUSEHOLDS ACROSS THE 11891 06:36:06,880 --> 06:36:07,080 STATE. 11892 06:36:07,080 --> 06:36:08,880 SPENT A LOT OF TIME GENERATING 11893 06:36:08,880 --> 06:36:11,800 THAT DATA TO DO SOME EPI WORK 11894 06:36:11,800 --> 06:36:12,440 BUT WE ALSO DEVELOPED SOMETHING 11895 06:36:12,440 --> 06:36:13,560 CALLED THE DRINKING WATER TOOL, 11896 06:36:13,560 --> 06:36:15,240 WHICH PUTS THAT ONLINE FOR 11897 06:36:15,240 --> 06:36:17,080 DIVERSE END USERS, THE WATER 11898 06:36:17,080 --> 06:36:18,120 BOARD HAS BEEN SUPER INTERESTED 11899 06:36:18,120 --> 06:36:21,320 IN OUR METHOD ABOUT HOW WE 11900 06:36:21,320 --> 06:36:23,360 DEVELOPED IT, AND SO I THINK 11901 06:36:23,360 --> 06:36:24,040 IT'S BEEN -- IT'S NOT INDIVIDUAL 11902 06:36:24,040 --> 06:36:25,240 LEVEL REPORTBACK, BUT IT IS A 11903 06:36:25,240 --> 06:36:28,360 REPORTBACK IN A WAY TO DIVERSE 11904 06:36:28,360 --> 06:36:29,280 STAKEHOLDERS, BOTH IN TERMS OF 11905 06:36:29,280 --> 06:36:30,800 AGENCY STAKEHOLDERS BUT ALSO 11906 06:36:30,800 --> 06:36:31,800 COMMUNITIES THAT ARE INTERESTED 11907 06:36:31,800 --> 06:36:35,480 IN DRIPPING WATER QUALITY, AND 11908 06:36:35,480 --> 06:36:36,160 IN THIS CASE WE'RE ALSO LOOKING 11909 06:36:36,160 --> 06:36:40,960 AT THREATS TO ACCESS DUE TO 11910 06:36:40,960 --> 06:36:41,280 DROUGHT. 11911 06:36:41,280 --> 06:36:43,680 SO I THINK WE CAN THINK BROADLY 11912 06:36:43,680 --> 06:36:44,400 ABOUT HOW WE CAN LEVERAGE A LOT 11913 06:36:44,400 --> 06:36:46,200 OF THIS AMAZING DATA THAT WE'VE 11914 06:36:46,200 --> 06:36:47,960 GENERATED THAT CAN BE POSTED 11915 06:36:47,960 --> 06:36:49,480 ONLINE NOT JUST INDIVIDUAL LEVEL 11916 06:36:49,480 --> 06:36:51,200 THAT COULD BE OF USE TO DIVERSE 11917 06:36:51,200 --> 06:36:58,720 END USERS AND STAKEHOLDERS. 11918 06:36:58,720 --> 06:37:00,800 >>KIM? 11919 06:37:00,800 --> 06:37:04,880 >>YEAH, I WAS JUST THINKING 11920 06:37:04,880 --> 06:37:07,280 AGAIN ABOUT THE ENVIRONMENTAL 11921 06:37:07,280 --> 06:37:08,560 COUNSELORS. 11922 06:37:08,560 --> 06:37:09,200 I THINK THAT'S A GREAT IDEA, BUT 11923 06:37:09,200 --> 06:37:12,200 I KIND OF ALWAYS GOT STUCK ON 11924 06:37:12,200 --> 06:37:13,280 WHO WOULD BE HIRING THEM. 11925 06:37:13,280 --> 06:37:14,960 LIKE IF WE STARTED SOME 11926 06:37:14,960 --> 06:37:15,680 ENVIRONMENTAL COUNSELING 11927 06:37:15,680 --> 06:37:17,680 PROGRAMS AND, YOU KNOW, IT TAKES 11928 06:37:17,680 --> 06:37:20,040 THEM A FEW YEARS TO GET THROUGH 11929 06:37:20,040 --> 06:37:21,360 THAT, THEY WANT A JOB, AND THE 11930 06:37:21,360 --> 06:37:22,800 PROBLEM IS, YOU KNOW, THE 11931 06:37:22,800 --> 06:37:27,120 GENETIC COUNSELORS AT ALL MAJOR 11932 06:37:27,120 --> 06:37:27,800 COUNSELORS HAVE A GENETIC 11933 06:37:27,800 --> 06:37:29,320 COUNSELOR AND IT VERY EMBEDDED 11934 06:37:29,320 --> 06:37:33,240 LIKE WITH BRCA1 AND PRENATAL 11935 06:37:33,240 --> 06:37:35,240 DIAGNOSIS AND ALL HOSPITALS OF A 11936 06:37:35,240 --> 06:37:36,080 CERTAIN SIZE FEEL LIKE THEY NEED 11937 06:37:36,080 --> 06:37:38,760 TO HAVE A GENETIC COUNSELOR, BUT 11938 06:37:38,760 --> 06:37:39,800 YOU KNOW, IF THIS IS SORT OF 11939 06:37:39,800 --> 06:37:43,840 OUTSIDE THAT REALM, I DON'T KNOW 11940 06:37:43,840 --> 06:37:45,720 IF STATE DEPARTMENTS WOULD BE 11941 06:37:45,720 --> 06:37:49,080 HIRING THE ENVIRONMENTAL 11942 06:37:49,080 --> 06:37:51,280 COUNSELORS OR THAT IS WHERE I 11943 06:37:51,280 --> 06:37:52,600 ALWAYS KIND OF GET STUCK. 11944 06:37:52,600 --> 06:38:00,920 ANYWAY. 11945 06:38:00,920 --> 06:38:02,760 >>COULD I BEGIN TO ANSWER THAT 11946 06:38:02,760 --> 06:38:03,040 QUESTION? 11947 06:38:03,040 --> 06:38:04,360 I DON'T HAVE AN ACTUAL ANSWER 11948 06:38:04,360 --> 06:38:06,880 FOR YOU BUT TO REMIND EVERYONE, 11949 06:38:06,880 --> 06:38:08,680 GENETIC COUNSELORS WEREN'T EVEN 11950 06:38:08,680 --> 06:38:09,360 RECOGNIZED HEALTHCARE PROVIDERS 11951 06:38:09,360 --> 06:38:11,640 IN EVERY STATE FOR A LONG TIME. 11952 06:38:11,640 --> 06:38:12,320 THAT'S TAKEN A LOT OF EFFORT ON 11953 06:38:12,320 --> 06:38:13,720 BEHALF OF NATIONAL ORGANIZATIONS 11954 06:38:13,720 --> 06:38:15,240 LIKE NSGC AND OTHERS TO TURN 11955 06:38:15,240 --> 06:38:17,440 THAT INTO A REALITY. 11956 06:38:17,440 --> 06:38:20,000 SO IT TOOK DECADES TO GET TO THE 11957 06:38:20,000 --> 06:38:21,360 POINT WHERE YOU'RE TALKING ABOUT 11958 06:38:21,360 --> 06:38:23,120 GENETIC COUNSELORS AS IF THEY 11959 06:38:23,120 --> 06:38:24,680 WERE LIKE NOW, YOU KNOW, 11960 06:38:24,680 --> 06:38:27,080 STANDARD OPERATING PROCEDURES IN 11961 06:38:27,080 --> 06:38:28,640 HOSPITALS, IT JUST WASN'T THAT 11962 06:38:28,640 --> 06:38:31,120 WAY AT ALL TIMES. 11963 06:38:31,120 --> 06:38:32,440 I'D SAY THIS IS MORE RELEVANT 11964 06:38:32,440 --> 06:38:33,400 FOR GOING BACK TO THE EARLY 11965 06:38:33,400 --> 06:38:35,120 STAGES OF HAVING GENETIC 11966 06:38:35,120 --> 06:38:35,720 COUNSELORS AND MAYBE THERE'S 11967 06:38:35,720 --> 06:38:36,680 SOME LESSONS THAT CAN BE LEARNED 11968 06:38:36,680 --> 06:38:41,920 THERE THAT CAN BE APPLIED TO 11969 06:38:41,920 --> 06:38:43,080 THIS NEW CAREER OR NEW FIELD OF 11970 06:38:43,080 --> 06:38:52,200 ENVIRONMENTAL COUNSELING. 11971 06:38:52,200 --> 06:38:53,840 >>KIM, IT SEEMS LIKE YOU HAVE A 11972 06:38:53,840 --> 06:38:55,440 REALLY GOOD POSITION TO PUSH FOR 11973 06:38:55,440 --> 06:38:56,800 SOMETHING LIKE THAT AND START 11974 06:38:56,800 --> 06:38:59,720 ORGANIZING THAT. 11975 06:38:59,720 --> 06:39:02,440 OF IF YOU CAN HAVE A GENETIC 11976 06:39:02,440 --> 06:39:03,000 COUNSELOR AND YOU KNOW THAT 11977 06:39:03,000 --> 06:39:04,200 ENVIRONMENT IS COUNTING FOR AT 11978 06:39:04,200 --> 06:39:06,600 LEAST PART OF THE OUTCOME OF 11979 06:39:06,600 --> 06:39:09,520 THAT GENETIC FINDING, IT SEEMS 11980 06:39:09,520 --> 06:39:10,760 LIKE THE HOSPITALS SHOULD BE THE 11981 06:39:10,760 --> 06:39:16,120 PLACE WHERE THE COUNSELORS WOULD 11982 06:39:16,120 --> 06:39:17,960 BE. 11983 06:39:17,960 --> 06:39:19,600 ESPECIALLY GIVEN THE LACK OF ANY 11984 06:39:19,600 --> 06:39:20,440 TRAINING IN ENVIRONMENTAL 11985 06:39:20,440 --> 06:39:30,560 HEALTH. 11986 06:39:30,560 --> 06:39:41,080 >>WE HAVE ONE MORE QUESTION. 11987 06:39:41,440 --> 06:39:41,560 OKAY. 11988 06:39:41,560 --> 06:39:47,120 WELL, I THINK WE CAN WRAP UP DAY 11989 06:39:47,120 --> 06:39:48,760 ONE OF OUR WORKSHOP. 11990 06:39:48,760 --> 06:39:49,440 I WANT TO THANK EVERYBODY AGAIN. 11991 06:39:49,440 --> 06:39:52,800 WE REALLY APPRECIATE THE TIME 11992 06:39:52,800 --> 06:39:54,000 AND ENERGY AND EFFORT YOU PUT 11993 06:39:54,000 --> 06:39:55,880 INTO ATTENDING, PRESENTING AND 11994 06:39:55,880 --> 06:39:57,840 TO ORGANIZING TODAY. 11995 06:39:57,840 --> 06:40:01,440 SO ONE PARTING THOUGHT, WE WILL 11996 06:40:01,440 --> 06:40:02,840 RECONVENE TOMORROW AT THE SAME 11997 06:40:02,840 --> 06:40:06,120 TIME, AT 9:00, FOR THE SECOND 11998 06:40:06,120 --> 06:40:06,920 PART OF THE WORKSHOP. 11999 06:40:06,920 --> 06:40:08,120 SO THANK YOU AGAIN, EVERYBODY. 12000 06:40:08,120 --> 06:40:11,280 WE REALLY APPRECIATE IT. 12001 06:40:11,280 --> 06:40:12,920 >>THANKS FOR YOUR CONTINUED 12002 06:40:12,920 --> 06:40:13,800 ENERGY THROUGHOUT THE DAY. 12003 06:40:13,800 --> 06:40:14,000 >>YEAH, REMARKABLE. 12004 06:40:14,000 --> 00:00:00,000 >>HAVE A GOOD EVENING, EVERYBODY.