1 00:00:04,922 --> 00:00:06,090 WELCOME, EVERYONE, TO SESSION 2 00:00:06,090 --> 00:00:10,995 FIVE OF ETHICAL AND REGULATORIES 3 00:00:10,995 --> 00:00:12,730 A ASPECTS OF CLINICAL RESEARCH. 4 00:00:12,730 --> 00:00:15,066 THANKS FOR JOINING US TODAY. IF 5 00:00:15,066 --> 00:00:16,934 QUESTIONS DURING ANY OF THE 6 00:00:16,934 --> 00:00:19,604 LECTURES PLEASE POST THEM IN THE 7 00:00:19,604 --> 00:00:22,106 DISCUSSION BOARD TODAY IS 8 00:00:22,106 --> 00:00:24,308 GENETICS DAY WE'RE GOING TO 9 00:00:24,308 --> 00:00:26,644 STANDARD WITH BEN BERKMAN WHO 10 00:00:26,644 --> 00:00:29,814 WILL GIVE US A GENERAL OVERVIEW. 11 00:00:29,814 --> 00:00:31,749 DR. JULIE SAP IS GOING TO COME 12 00:00:31,749 --> 00:00:33,618 TO THE MIC AFTER THAT TO TALK 13 00:00:33,618 --> 00:00:34,986 ABOUT OUTCOMES RELATED TO 14 00:00:34,986 --> 00:00:36,687 SECONDARY FINDINGS AND THEN WE 15 00:00:36,687 --> 00:00:40,725 WILL ZOOM IN A GUEST DR. KATRINA 16 00:00:40,725 --> 00:00:43,127 FROM UNIVERSITY OF COLORADO. SO 17 00:00:43,127 --> 00:00:45,696 FIRST, WE HAVE BEN BERKMAN, A 18 00:00:45,696 --> 00:00:48,065 FACULTY MEMBER IN THE NIH 19 00:00:48,065 --> 00:00:50,234 DEPARTMENT OF BIOETHICS WHERE 20 00:00:50,234 --> 00:00:53,271 HE'S ALSO JOINTLY AN APPOINTED 21 00:00:53,271 --> 00:00:55,039 IN THE NATIONAL HUMAN GENOME 22 00:00:55,039 --> 00:00:56,908 RESEARCH INSTITUTE SO HE HAS 23 00:00:56,908 --> 00:00:58,976 LOTS OF EXPERTISE TO SHARE WITH 24 00:00:58,976 --> 00:01:03,514 US TODAY. THANK YOU, BEN. 25 00:01:03,514 --> 00:01:05,917 >> BEN: THANKS FOR HAVING ME I'M 26 00:01:05,917 --> 00:01:07,251 EXCITED TO BE HERE. I AM GOING 27 00:01:07,251 --> 00:01:10,822 TO TALK ABOUT THE ETHICS OF 28 00:01:10,822 --> 00:01:11,722 RETURNING GENOMIC RESEARCH 29 00:01:11,722 --> 00:01:13,191 RESULTS THERE'S A LOT OF TOPICS 30 00:01:13,191 --> 00:01:15,593 I COULD TALK ABOUT IN THE AREA 31 00:01:15,593 --> 00:01:17,695 OF GENETICS AND RESEARCH ETHICS 32 00:01:17,695 --> 00:01:19,597 AND HUMAN SUBJECTS RESEARCH BUT 33 00:01:19,597 --> 00:01:22,967 THIS IS THE ONE THAT REALLY HAS 34 00:01:22,967 --> 00:01:25,036 BEEN TAKING THE MOST ATTENTION 35 00:01:25,036 --> 00:01:27,738 OVER THE PAST DECADE AND A HALF 36 00:01:27,738 --> 00:01:32,276 AND SO I THINK IT HAS PARTICULAR 37 00:01:32,276 --> 00:01:33,544 RELEVANCE. I DO SOMETIMES SAY 38 00:01:33,544 --> 00:01:35,379 CONTROVERSIAL THINGS AND WHEN I 39 00:01:35,379 --> 00:01:36,280 DO THEY ARE MY VIEWS AND MY 40 00:01:36,280 --> 00:01:39,183 VIEWS ALONE I DO NOT REPRESENT 41 00:01:39,183 --> 00:01:42,053 ANYONE OF AUTHORITY IN THE 42 00:01:42,053 --> 00:01:43,154 FEDERAL GOVERNMENT. SO LET ME 43 00:01:43,154 --> 00:01:44,655 GIVE YOU SOME HISTORY, SOME 44 00:01:44,655 --> 00:01:46,991 BACKGROUND, JUST SO YOU CAN SEE 45 00:01:46,991 --> 00:01:51,095 WHERE, HOW WE GOT HERE. IT WAS 46 00:01:51,095 --> 00:01:55,399 ABOUT 2008 THAT WE REALLY HAD A 47 00:01:55,399 --> 00:01:58,302 REVOLUTION IN HOW WE DID 48 00:01:58,302 --> 00:02:00,338 SEQUENCING, SEQUENCING 49 00:02:00,338 --> 00:02:01,806 TECHNOLOGY. SOMETIMES PEOPLE 50 00:02:01,806 --> 00:02:04,008 CALL IT NEXT GENERATION 51 00:02:04,008 --> 00:02:06,277 SEQUENCING. THE HUMAN GENOME 52 00:02:06,277 --> 00:02:07,645 PROJECT COST THREE BILLION 53 00:02:07,645 --> 00:02:09,447 DOLLARS AND TOOK A DECADE -- THE 54 00:02:09,447 --> 00:02:11,716 ABILITY TO SEQUENCE A WHOLE 55 00:02:11,716 --> 00:02:13,484 HUMAN GENOME PRETTY QUICKLY IN A 56 00:02:13,484 --> 00:02:16,988 FEW DAYS FOR AT THAT POINT IT 57 00:02:16,988 --> 00:02:19,991 WAS ABOUT $10,000 NOW IT'S 58 00:02:19,991 --> 00:02:21,893 ABOUT -- IT'S VERY, VERY CHEAP 59 00:02:21,893 --> 00:02:25,129 TO DO SEQUENCE DATA AND SO THIS 60 00:02:25,129 --> 00:02:27,698 WAS SORT OF A PARADIGMATIC SHIFT 61 00:02:27,698 --> 00:02:29,300 IN THE WAY WE DO THINGS AND I 62 00:02:29,300 --> 00:02:32,837 COME -- IT'S COMPARED HERE TO 63 00:02:32,837 --> 00:02:34,872 MOORS LAW WHICH IS THE RULE OF 64 00:02:34,872 --> 00:02:38,509 THUMB ABOUT COMPUTING 65 00:02:38,509 --> 00:02:40,978 TECHNOLOGY. THE SUPERCOMPUTERS 66 00:02:40,978 --> 00:02:43,514 WE CARRY AROUND IN OUR POCKETS. 67 00:02:43,514 --> 00:02:46,984 THOSE DOUBLE IN POWER EVERY 18 68 00:02:46,984 --> 00:02:50,354 MONTHS OR SO THINKING ABOUT HOW 69 00:02:50,354 --> 00:02:52,990 MUCH THESE HAVE ADVANCED 70 00:02:52,990 --> 00:02:53,791 SEQUENCING TECHNOLOGY HAS BEEN 71 00:02:53,791 --> 00:02:55,126 THAT MUCH MORE IMPRESSIVE. SO, 72 00:02:55,126 --> 00:02:57,862 IT'S A POWERFUL RESEARCH TOOL. 73 00:02:57,862 --> 00:03:00,164 GENERATES HUGE AMOUNTS OF DATA 74 00:03:00,164 --> 00:03:01,299 ABOUT AN INDIVIDUAL AND REALLY 75 00:03:01,299 --> 00:03:03,067 BEYOND THAT WHICH IS NECESSARY 76 00:03:03,067 --> 00:03:06,070 TO ANSWER MOST SCIENTIFIC 77 00:03:06,070 --> 00:03:07,305 QUESTIONS. AND WHEN YOU'RE 78 00:03:07,305 --> 00:03:09,740 GENERATING HUGE AMOUNTS OF DATA 79 00:03:09,740 --> 00:03:10,975 LIKE THAT, YOU CAN OBVIOUSLY 80 00:03:10,975 --> 00:03:14,011 FIND CLINICAL RELEVANT THINGS IN 81 00:03:14,011 --> 00:03:15,913 SOMEONE'S GENOME. AND SO THE 82 00:03:15,913 --> 00:03:17,315 ETHICAL QUESTION BROADLY STATED 83 00:03:17,315 --> 00:03:19,784 IS WHAT SORT OF ETHICAL 84 00:03:19,784 --> 00:03:22,653 OBLIGATIONS DO WE, AS 85 00:03:22,653 --> 00:03:24,388 RESEARCHERS HAVE WITH REGARDS TO 86 00:03:24,388 --> 00:03:26,157 THESE POTENTIALLY CLINICALLY 87 00:03:26,157 --> 00:03:28,426 RELEVANT FINDINGS. LET ME JUST 88 00:03:28,426 --> 00:03:33,397 GIVE YOU A FEW 2IR78 TERMS THAT 89 00:03:33,397 --> 00:03:36,901 GOING TO THROW AROUND. 90 00:03:36,901 --> 00:03:38,502 SOMETIMES PEOPLE TALK ABOUT 91 00:03:38,502 --> 00:03:42,106 GENOME WIDE ASSOCIATION STUDIES. 92 00:03:42,106 --> 00:03:43,574 GWAS, THAT'S WHEN YOU TAKE 93 00:03:43,574 --> 00:03:45,309 SLIVERS OF SOMETHING. THAT'S 94 00:03:45,309 --> 00:03:47,178 NOT WHAT WE'RE TALKING ABOUT 95 00:03:47,178 --> 00:03:49,146 TODAY. WE'RE TALKING ABOUT 96 00:03:49,146 --> 00:03:51,315 SPELLING OUT THE WHOLE GENOME, 97 00:03:51,315 --> 00:03:56,387 XOM IS JUST A PROTEIN CODING 98 00:03:56,387 --> 00:03:56,887 REGI 99 00:03:56,887 --> 00:03:59,690 REGIONS, THE WHOLE REGION IS THE 100 00:03:59,690 --> 00:04:02,994 WHOLE THING. I WILL TALK ABOUT 101 00:04:02,994 --> 00:04:07,598 INSI DEN TANL OF SECONDARY 102 00:04:07,598 --> 00:04:08,399 FINDINGS 103 00:04:08,399 --> 00:04:11,002 INCIDENTAL FINDINGS CONCERN AN 104 00:04:11,002 --> 00:04:11,869 INDIVIDUAL RESEARCH PARTICIPANT 105 00:04:11,869 --> 00:04:13,437 WITH POTENTIAL HEALTH OR 106 00:04:13,437 --> 00:04:14,171 REPRODUCTIVE IMPORTANCE 107 00:04:14,171 --> 00:04:15,206 DISCOVERED IN THE COURSE OF 108 00:04:15,206 --> 00:04:16,707 DOING THE RESEARCH BUT NOT 109 00:04:16,707 --> 00:04:19,310 RELATED TO THE AIMS OF THE 110 00:04:19,310 --> 00:04:20,945 STUDY. SO THEY'RE SORT OF 111 00:04:20,945 --> 00:04:23,147 THE -- WE STUMBLE UPON THEM KIND 112 00:04:23,147 --> 00:04:25,983 OF FINDING. SECONDARY FINDINGS 113 00:04:25,983 --> 00:04:28,719 ARE RELATED BUT RELATED IN THE 114 00:04:28,719 --> 00:04:29,720 SENSE THAT -- THEY HAVE THESE 115 00:04:29,720 --> 00:04:31,088 IMPORTANT HEALTH IMPLICATIONS 116 00:04:31,088 --> 00:04:34,925 AND NOT RELATED TO THE AIMS OF 117 00:04:34,925 --> 00:04:37,528 THE STUDY BUT WE INTENTIONALLY 118 00:04:37,528 --> 00:04:39,730 LOOK FOR THEM ACTIVELY ANALYZE 119 00:04:39,730 --> 00:04:42,967 THE GENOME LOOKING FOR THEM. I 120 00:04:42,967 --> 00:04:45,703 JUST EXPLAINED THIS PRIMARY 121 00:04:45,703 --> 00:04:46,904 RESULTS JUST FOR REFERENCE ARE 122 00:04:46,904 --> 00:04:49,273 THINGS THAT ARE RELATED TO THE 123 00:04:49,273 --> 00:04:51,642 CONDITION UNDER INVESTIGATION. 124 00:04:51,642 --> 00:04:53,911 SO, I'M GOING TO PRIMARILY BE 125 00:04:53,911 --> 00:04:56,180 TALKING ABOUT SECONDARY FINDINGS 126 00:04:56,180 --> 00:04:58,983 BECAUSE WE MOVED PAST INCIDENTAL 127 00:04:58,983 --> 00:05:00,785 FINDINGS, THINGS THAT ARE 128 00:05:00,785 --> 00:05:02,253 IMPORTANT THAT ARE UNRELATED TO 129 00:05:02,253 --> 00:05:04,955 THE RESEARCH THAT WE'RE DOING. 130 00:05:04,955 --> 00:05:08,926 SO LET ME GIVE YOU A WARMUP IN 131 00:05:08,926 --> 00:05:11,462 CASE, EXCUSE ME, THIS IS 132 00:05:11,462 --> 00:05:12,563 ACTUALLY A REAL CASE THAT I HAD 133 00:05:12,563 --> 00:05:15,232 THAT WAS ONE OF THE FIRST ETHICS 134 00:05:15,232 --> 00:05:18,402 CONSULTS THAT I RAN AS AN 135 00:05:18,402 --> 00:05:19,136 ATTENDING. SO IMAGINE A 136 00:05:19,136 --> 00:05:22,073 CLINICAL RESEARCHER STUDYING THE 137 00:05:22,073 --> 00:05:25,776 GENETIC IDEOLOGY OF BREAST 138 00:05:25,776 --> 00:05:27,711 CANCER IN PATIENTS, PATIENTS 139 00:05:27,711 --> 00:05:29,180 THAT ARE PRESENTING FOR 140 00:05:29,180 --> 00:05:31,816 TREATMENT AT AN ACADEMIC MEDICAL 141 00:05:31,816 --> 00:05:32,817 CENTER THEY'VE GIVEN THEIR 142 00:05:32,817 --> 00:05:34,985 CLINICAL CONCEPT, ALSO GET 143 00:05:34,985 --> 00:05:36,987 RESEARCH SPECIFIC INFORMED 144 00:05:36,987 --> 00:05:39,256 CONCEPT AND THE TEAM IS GOING TO 145 00:05:39,256 --> 00:05:42,359 THEN SEQUENCE THEIR GENETIC 146 00:05:42,359 --> 00:05:45,229 MATERIAL LOOKING FROM SURPLUS 147 00:05:45,229 --> 00:05:48,732 TUMOR TO LOOKING FOR NOVEL BRCA 148 00:05:48,732 --> 00:05:50,701 VARIANTS THAT MIGHT PREDICT 149 00:05:50,701 --> 00:05:51,735 DISEASE. I SHOULD SAY THIS IS 150 00:05:51,735 --> 00:05:53,971 AN UNDERSTUDY OF THE POPULATION, 151 00:05:53,971 --> 00:05:55,840 A MINORITY POPULATION SO THERE 152 00:05:55,840 --> 00:05:58,409 ARE LOTS OF BRCA VARIANTS THAT 153 00:05:58,409 --> 00:06:00,911 HAVE BEEN IDENTIFIED BUT NOT AS 154 00:06:00,911 --> 00:06:03,013 MANY IN THIS GROUP AT LEAST AT 155 00:06:03,013 --> 00:06:04,782 THAT TIME. THEY PROPOSE TO 156 00:06:04,782 --> 00:06:07,017 DE-IDENTIFY THE SEQUENCE DATA 157 00:06:07,017 --> 00:06:10,454 THEY DON'T PLAN TO RETURN ANY 158 00:06:10,454 --> 00:06:13,424 RESULTS. EVEN THOUGH THEY KNOW 159 00:06:13,424 --> 00:06:15,726 THEY'RE LOOKING FOR NOVEL 160 00:06:15,726 --> 00:06:17,328 DISEASE ASSOCIATED VARIANTS THEY 161 00:06:17,328 --> 00:06:18,529 KNOW THAT IN SOME PERCENTAGE OF 162 00:06:18,529 --> 00:06:21,999 THE POPULATION THEY'RE GOING TO 163 00:06:21,999 --> 00:06:23,534 DISCOVER ALREADY ESTABLISHED 164 00:06:23,534 --> 00:06:25,603 BRCA VARIANTS THAT COULD BE 165 00:06:25,603 --> 00:06:26,504 CLINICALLY RELEVANT PARTICULARLY 166 00:06:26,504 --> 00:06:28,372 FOR NEAR TREATMENT DECISIONS, 167 00:06:28,372 --> 00:06:30,107 THESE ARE WOMEN WITH BREAST 168 00:06:30,107 --> 00:06:31,575 CANCER PRESENTING FOR TREATMENT 169 00:06:31,575 --> 00:06:34,411 AND SO KNOWLEDGE ABOUT THEIR 170 00:06:34,411 --> 00:06:36,013 GENETIC VARIANTS CAN BE RELEVANT 171 00:06:36,013 --> 00:06:37,982 SO THE QUESTION IS SHOULD THESE 172 00:06:37,982 --> 00:06:39,617 RESEARCHERS BE ALLOWED TO DESIGN 173 00:06:39,617 --> 00:06:41,685 THE STUDY IN THIS WAY WHERE THEY 174 00:06:41,685 --> 00:06:43,387 FIND THINGS THAT ARE CLINICALLY 175 00:06:43,387 --> 00:06:45,289 IMPORTANT BUT NOT GIVE THEM BACK 176 00:06:45,289 --> 00:06:49,160 TO PATIENT TO THE PARTICIPANTS. 177 00:06:49,160 --> 00:06:50,327 DOES ANYONE IN THE ROOM HAVE ANY 178 00:06:50,327 --> 00:06:59,003 SORT OF INSTINCTS ABOUT THIS? 179 00:06:59,003 --> 00:07:04,208 YEAH. NO, YOU DO? 180 00:07:04,208 --> 00:07:04,842 >> AUDIENCE: I DON'T THINK THEY 181 00:07:04,842 --> 00:07:06,443 SHOULD BE ALLOWED TO DO IT 182 00:07:06,443 --> 00:07:07,745 BECAUSE THEY KNOW IN ADVANCE 183 00:07:07,745 --> 00:07:10,414 THEY MIGHT FIND SOME THINGS. 184 00:07:10,414 --> 00:07:15,753 >> RENU: SO THAT'S SORT OF THE 185 00:07:15,753 --> 00:07:18,055 PUZZLE HERE IS THERE'S SOMETHING 186 00:07:18,055 --> 00:07:19,757 BENEFICIAL THAT THE TEAM COULD 187 00:07:19,757 --> 00:07:20,791 PROVIDE TO THE PARTICIPANTS THAT 188 00:07:20,791 --> 00:07:22,660 COULD BE IMPORTANT FOR THEIR 189 00:07:22,660 --> 00:07:25,062 HEALTH. SO THERE'S THIS BENEVER 190 00:07:25,062 --> 00:07:26,130 SINCE ARGUMENT THAT YOU COULD 191 00:07:26,130 --> 00:07:26,330 MAKE. 192 00:07:26,330 --> 00:07:29,867 THE INVESTIGATOR HOWEVER, CAN 193 00:07:29,867 --> 00:07:31,168 AND IN FACT DID SAY, YOU KNOW, 194 00:07:31,168 --> 00:07:33,938 WE DON'T HAVE ANY GENETIC 195 00:07:33,938 --> 00:07:35,272 COUNSELORS ON STAFF, IT WOULD 196 00:07:35,272 --> 00:07:38,342 COST US A BUNCH OF MONEY TO HAVE 197 00:07:38,342 --> 00:07:39,843 TO VALIDATE THESE FINDINGS WHICH 198 00:07:39,843 --> 00:07:41,912 WE HAVE TO DO BY LAW BEFORE WE 199 00:07:41,912 --> 00:07:43,747 CAN RETURN THEM. IT WOULD SLOW 200 00:07:43,747 --> 00:07:47,051 US DOWN, ACTUALLY DELAY THE TIME 201 00:07:47,051 --> 00:07:48,552 US FINDING THESE NOVEL BRCA 202 00:07:48,552 --> 00:07:49,687 VARIANTS THAT COULD HELP 203 00:07:49,687 --> 00:07:50,588 THOUSANDS OF PEOPLE AND SO 204 00:07:50,588 --> 00:07:52,590 THERE'S THIS BURDEN ON THE 205 00:07:52,590 --> 00:07:55,326 RESEARCH ENTERPRISE KIND OF 206 00:07:55,326 --> 00:07:56,961 ARGUMENT THAT IS OFTEN MADE. 207 00:07:56,961 --> 00:07:58,996 ALSO, HE MADE THE ARGUMENT, YOU 208 00:07:58,996 --> 00:08:00,331 KNOW, OR COULD HAVE MADE THE 209 00:08:00,331 --> 00:08:01,932 ARGUMENT THIS ISN'T MY JOB, I'M 210 00:08:01,932 --> 00:08:03,734 A RESEARCHER, I'M NOT PROVIDING 211 00:08:03,734 --> 00:08:05,002 CLINICAL CARE IF THEY WANT TO 212 00:08:05,002 --> 00:08:06,704 GET TESTING, THEY CAN GO GET 213 00:08:06,704 --> 00:08:08,172 TESTING, WHY SHOULD I HAVE TO 214 00:08:08,172 --> 00:08:10,574 PROVIDE THIS SERVICE? BUT I 215 00:08:10,574 --> 00:08:13,777 THINK WE'VE MOVED TO A POINT 216 00:08:13,777 --> 00:08:15,679 WHERE THOSE KINDS OF ARGUMENTS 217 00:08:15,679 --> 00:08:17,014 THAT THE RESEARCHER WAS MAKING 218 00:08:17,014 --> 00:08:20,784 ARE NO LONGER BEING 219 00:08:20,784 --> 00:08:21,952 WELL-RECEIVED SO LET ME GIVE YOU 220 00:08:21,952 --> 00:08:23,754 SOME EARLY VIEWS. I TALKED 221 00:08:23,754 --> 00:08:26,090 ABOUT THE STUMBLE STRATEGY. 222 00:08:26,090 --> 00:08:27,224 EARLY ON WE WEREN'T ACTIVELY 223 00:08:27,224 --> 00:08:29,560 LOOK FOR THINGS, WE WERE 224 00:08:29,560 --> 00:08:31,762 STUMBLING ACROSS THEM AND DOING 225 00:08:31,762 --> 00:08:35,599 A CASE-BY-CASE ANALYSIS. WERE 226 00:08:35,599 --> 00:08:38,302 WE DOING CASE RESULTS? WE HAVE 227 00:08:38,302 --> 00:08:42,039 TO LOOK AT THE SITUATIONS. IRBS 228 00:08:42,039 --> 00:08:44,408 WERE RELUCTANT TO RETURN RESULTS 229 00:08:44,408 --> 00:08:46,543 BECAUSE THEY WERE WORRIED ABOUT 230 00:08:46,543 --> 00:08:48,279 PSYCHOSOCIAL RISKS BUT TODAY, 231 00:08:48,279 --> 00:08:50,047 AND THIS IS THE TYPE LINE THING 232 00:08:50,047 --> 00:08:52,850 I WANT TO STRESS, GENOMICS IS 233 00:08:52,850 --> 00:08:56,086 YOO CHEAP, IT'S UBIQUITOUS, IT'S 234 00:08:56,086 --> 00:08:58,622 ALL THROUGHOUT OUR RESEARCH 235 00:08:58,622 --> 00:08:58,922 ENTERPRISE. 236 00:08:58,922 --> 00:09:01,058 THERE'S A TON OF PROLIFERATION 237 00:09:01,058 --> 00:09:03,494 OF EXPERTISE AND GUIDANCE. 238 00:09:03,494 --> 00:09:04,762 WE'VE MOVED PAST THIS IDEA THAT 239 00:09:04,762 --> 00:09:09,400 IT'S REALLY DANGEROUS, THAT... 240 00:09:09,400 --> 00:09:11,902 TOWARDS THE IDEA THAT IT'S JUST 241 00:09:11,902 --> 00:09:13,404 MORE INFORMATION. AND TOWARDS 242 00:09:13,404 --> 00:09:15,539 THE IDEA THAT THESE PSYCHOSOCIAL 243 00:09:15,539 --> 00:09:17,474 RISKS THAT WE UNDERSTANDABLY 244 00:09:17,474 --> 00:09:19,410 WERE CONCERNED ABOUT REALLY ON 245 00:09:19,410 --> 00:09:21,045 REALLY ACTUALLY WE'VE DONE TONS 246 00:09:21,045 --> 00:09:23,747 OF RESEARCH AND THE RISKS SEEM 247 00:09:23,747 --> 00:09:25,916 TO BE PRETTY MINIMAL EXCEPT IN 248 00:09:25,916 --> 00:09:28,986 SOME ISOLATED AND VERY DISTINCT 249 00:09:28,986 --> 00:09:31,121 DISCREET CASES. AND SO WE NOW 250 00:09:31,121 --> 00:09:32,356 BROADLY HAVE THIS VIEW THAT 251 00:09:32,356 --> 00:09:35,159 THERE'S SOME OBLIGATION TO LOOK 252 00:09:35,159 --> 00:09:37,127 FOR AND RETURN A DEFINED SET OF 253 00:09:37,127 --> 00:09:41,398 SECONDARY FINDINGS. BUT THAT'S 254 00:09:41,398 --> 00:09:43,767 JUST SORT OF THE TOP LINE -- THE 255 00:09:43,767 --> 00:09:46,337 TOP LINE ARGUMENT, LIKE, WE NEED 256 00:09:46,337 --> 00:09:49,039 TO FLESH OUT THE CONTOURS OF 257 00:09:49,039 --> 00:09:50,974 WHAT THAT OBLIGATION MIGHT LOOK 258 00:09:50,974 --> 00:09:52,976 LIKE. AND ONE OF THE WAYS WE 259 00:09:52,976 --> 00:09:55,312 NEED TO DO THAT IS TO TALK ABOUT 260 00:09:55,312 --> 00:09:57,948 WHY THERE'S A DUTY TO LOOK FOR 261 00:09:57,948 --> 00:09:59,049 GENETIC RESEARCH RESULTS. SO 262 00:09:59,049 --> 00:10:01,051 I'VE ALREADY EXPLAINED IT'S 263 00:10:01,051 --> 00:10:03,053 LARGELY BENEFICENCE BASED 264 00:10:03,053 --> 00:10:06,123 ARGUMENT. TO GIVE PEOPLE BACK 265 00:10:06,123 --> 00:10:07,558 IMPORTANT CLINICAL INFORMATION. 266 00:10:07,558 --> 00:10:09,026 BUT RESEARCH ISN'T CLINICAL 267 00:10:09,026 --> 00:10:10,027 CARE. I THINK THAT'S PROBABLY 268 00:10:10,027 --> 00:10:11,962 SOMETHING YOU GUYS LEARNED IN 269 00:10:11,962 --> 00:10:15,766 THE FIRST SESSION OF THIS 270 00:10:15,766 --> 00:10:18,635 COURSE. THERE ARE POOR 271 00:10:18,635 --> 00:10:19,269 DISTINCTIONS BETWEEN RESEARCH 272 00:10:19,269 --> 00:10:20,304 AND CLINICAL CARE AND SO 273 00:10:20,304 --> 00:10:21,739 RESEARCHERS CAN'T BE ON THE HOOK 274 00:10:21,739 --> 00:10:24,675 TO GIVE THE SAME KINDS OF 275 00:10:24,675 --> 00:10:26,543 SERVICES AS A DOCTOR WOULD. A 276 00:10:26,543 --> 00:10:28,712 DOCTOR HAS TO DO WHAT'S BEST FOR 277 00:10:28,712 --> 00:10:30,614 THE PATIENT IN FRONT OF THEM. A 278 00:10:30,614 --> 00:10:32,416 RESEARCHER HAS OTHER OBLIGATIONS 279 00:10:32,416 --> 00:10:33,884 TO THE RESEARCH ENTERPRISE TO, 280 00:10:33,884 --> 00:10:36,520 THEIR DATA, TO WHATEVER 281 00:10:36,520 --> 00:10:38,956 GENERALIZABLE KNOWLEDGE THEY'RE 282 00:10:38,956 --> 00:10:40,924 TRYING TO PRODUCE. AND SO FROM 283 00:10:40,924 --> 00:10:42,559 MY PERSPECTIVE, THE BEST MODEL 284 00:10:42,559 --> 00:10:45,496 FOR THINKING ABOUT THIS AND FOR 285 00:10:45,496 --> 00:10:46,764 BALANCING THOSE CONSIDERATIONS 286 00:10:46,764 --> 00:10:50,667 IS A DUTY TO RESCUE OR ANCILLARY 287 00:10:50,667 --> 00:10:52,669 CARE KIND OF MODEL, ANCILLARY 288 00:10:52,669 --> 00:10:56,006 CARE FOR THOSE OF YOU WHO DON'T 289 00:10:56,006 --> 00:10:57,307 KNOW IS A ROLE SPECIFIC 290 00:10:57,307 --> 00:10:59,743 OBLIGATION DERIVED FROM THE DUTY 291 00:10:59,743 --> 00:11:01,745 TO RESCUE WHICH IS A GENERAL 292 00:11:01,745 --> 00:11:03,113 OBLIGATION. ANCILLARY CARE IS 293 00:11:03,113 --> 00:11:05,716 THE IDEA THAT RESEARCHERS 294 00:11:05,716 --> 00:11:06,383 SOMETIMES WILL HAVE 295 00:11:06,383 --> 00:11:08,252 PARTICIPANTS, GROUPS OF 296 00:11:08,252 --> 00:11:10,320 PARTICIPANTS IN FRONT OF THEM 297 00:11:10,320 --> 00:11:11,688 WITH KNOWN MEDICAL NEEDS 298 00:11:11,688 --> 00:11:13,924 UNRELATED TO THE RESEARCH 299 00:11:13,924 --> 00:11:15,626 THEY'RE DOING AND THE RESEARCHER 300 00:11:15,626 --> 00:11:17,394 COULD HELP THEM MEET THOSE NEEDS 301 00:11:17,394 --> 00:11:20,831 AT RELATIVELY LOW COST. A 302 00:11:20,831 --> 00:11:22,366 CLASSIC CASE IS IF YOU'RE GOING 303 00:11:22,366 --> 00:11:24,067 TO DO RESEARCH IN A REGION WHERE 304 00:11:24,067 --> 00:11:28,205 MALARIA IS ENDEMIC, MALARIA HAS 305 00:11:28,205 --> 00:11:30,274 NOTHING TO DO WITH THE RESEARCH 306 00:11:30,274 --> 00:11:31,508 YOUR DOING BUT YOU COULD BRING 307 00:11:31,508 --> 00:11:38,582 ALONG A BUNCH OF ANTIMALARIA 308 00:11:38,582 --> 00:11:42,085 MEDICATION AND PROVIDE A SERVICE 309 00:11:42,085 --> 00:11:45,289 TO THEM BUT IT'S UNRELATED TO 310 00:11:45,289 --> 00:11:46,824 RESEARCH. THAT'S THE BEST MODEL 311 00:11:46,824 --> 00:11:50,761 FOR RETURNING GENETIC RESEARCH 312 00:11:50,761 --> 00:11:52,429 RESULTS. AND REALLY THE REASON 313 00:11:52,429 --> 00:11:55,766 I THINK IT'S THE BEST MODEL IS 314 00:11:55,766 --> 00:11:59,002 BECAUSE IT SPECIFIES CONDITIONS 315 00:11:59,002 --> 00:12:01,205 WHEN RESULTS SHOULD BE RETURNED. 316 00:12:01,205 --> 00:12:03,240 I.E. HIGH BENEFICIAL CONDITIONS 317 00:12:03,240 --> 00:12:07,177 WHERE THERE'S LOW BURDEN TO THE 318 00:12:07,177 --> 00:12:08,412 RESEARCH TEAM AND WHERE THERE'S 319 00:12:08,412 --> 00:12:09,980 THE RESEARCH IS IN A SORT OF 320 00:12:09,980 --> 00:12:11,081 UNIQUE OPPORTUNITY TO PROVIDE 321 00:12:11,081 --> 00:12:12,382 THAT BENEFIT. IF SOMEONE ELSE 322 00:12:12,382 --> 00:12:14,251 WOULD BE ABLE TO PROVIDE THE MA 323 00:12:14,251 --> 00:12:15,752 LAIR Y'ALL DRUG LIKE THE 324 00:12:15,752 --> 00:12:17,054 RESEARCHER DOESN'T HAVE TO. 325 00:12:17,054 --> 00:12:19,056 BUT IF THE RESEARCHER IS THE 326 00:12:19,056 --> 00:12:21,091 ONLY ONE WHO COULD THAT HELPS 327 00:12:21,091 --> 00:12:23,727 LIMIT THE CASES IN WHICH 328 00:12:23,727 --> 00:12:27,764 ANCILLARY CARE OBLIGATIONS MIGHT 329 00:12:27,764 --> 00:12:30,200 BE PRODUCED. SO, IT SORT OF 330 00:12:30,200 --> 00:12:31,735 BALANCES THE BENEFIT TO THE 331 00:12:31,735 --> 00:12:32,836 PARTICIPANT AND THE BURDEN TO 332 00:12:32,836 --> 00:12:35,339 THE RESEARCH IN A WAY I FIND 333 00:12:35,339 --> 00:12:38,976 VERY ATTRACTIVE IN THIS CASE BUT 334 00:12:38,976 --> 00:12:40,744 IT'S NOT A PERFECT MODEL. FOR A 335 00:12:40,744 --> 00:12:42,379 NUMBER OF REASONS I COULD GO 336 00:12:42,379 --> 00:12:44,515 INTO BUT THE BIG ONE IS THAT IT 337 00:12:44,515 --> 00:12:45,782 MAKES RETURN OF RESULTS 338 00:12:45,782 --> 00:12:48,352 DEPENDENT ON RESEARCHER 339 00:12:48,352 --> 00:12:49,653 EXPERTISE AND PROTOCOL SPECIFIC 340 00:12:49,653 --> 00:12:51,989 RESOURCES, IF YOU'RE TALKING 341 00:12:51,989 --> 00:12:53,023 ABOUT BURDEN TO THE RESEARCH 342 00:12:53,023 --> 00:12:54,892 TEAM AS ONE OF THE PRIMARY 343 00:12:54,892 --> 00:12:56,260 CONSIDERATIONS, IF THE RESEARCH 344 00:12:56,260 --> 00:12:59,229 TEAM DOESN'T HAVE THE EXPERTISE, 345 00:12:59,229 --> 00:13:01,465 DOESN'T HAVE THE STAFF TO DO 346 00:13:01,465 --> 00:13:02,366 THIS, THEN THEY'D SAID THE 347 00:13:02,366 --> 00:13:06,470 BURDEN IS TOO HIGH, I HAVE NO 348 00:13:06,470 --> 00:13:07,738 OBLIGATION AND OBVIOUSLY IF 349 00:13:07,738 --> 00:13:09,773 WE'RE MAKING RETURN OF RESULTS 350 00:13:09,773 --> 00:13:11,508 DEPENDENT ON THOSE KINDS OF 351 00:13:11,508 --> 00:13:13,176 CONSIDERATIONS THAT CAN LEAD TO 352 00:13:13,176 --> 00:13:14,511 INEFFICIENCIES AND JUSTICE 353 00:13:14,511 --> 00:13:17,014 CONCERNS BECAUSE SIMILARLY 354 00:13:17,014 --> 00:13:19,816 SITUATED PARTICIPANTS WOULD GET 355 00:13:19,816 --> 00:13:26,557 DIFFERENT ACCESS TO INFORMATION 356 00:13:26,557 --> 00:13:27,424 BASED ON THE RESOURCES THE TEAM 357 00:13:27,424 --> 00:13:29,026 HAD WHICH IS NOT IDEAL AND HERE 358 00:13:29,026 --> 00:13:31,762 IS A PAPER WE WROTE ABOUT THIS 359 00:13:31,762 --> 00:13:36,900 IF PEOPLE ARE INTERESTED. SO, I 360 00:13:36,900 --> 00:13:39,770 AND OTHERS HAVE ARGUED THAT WE 361 00:13:39,770 --> 00:13:44,007 SHOULD START THINKING ABOUT AN 362 00:13:44,007 --> 00:13:45,742 INSTITUTIONAL DUTY OF RESCUE 363 00:13:45,742 --> 00:13:47,377 THAT THIS SHOULD FALL NOT TO THE 364 00:13:47,377 --> 00:13:48,946 INDIVIDUAL RESEARCH TEAM BUT TO 365 00:13:48,946 --> 00:13:51,281 THE INSTITUTION SUPPORTING THAT 366 00:13:51,281 --> 00:13:52,349 RESEARCH TEAM. AND THERE ARE A 367 00:13:52,349 --> 00:13:57,788 NUMBER OF REASONS WHY THIS IS 368 00:13:57,788 --> 00:14:01,425 ATTRACTIVE. THE MAIN ONES ARE 369 00:14:01,425 --> 00:14:03,760 THAT SINCE INDIVIDUAL 370 00:14:03,760 --> 00:14:05,228 RESEARCHERS LACK THE RIGHT 371 00:14:05,228 --> 00:14:06,163 EXPERTISE IF THE INSTITUTION IS 372 00:14:06,163 --> 00:14:07,531 PROVIDING THOSE IT CAN 373 00:14:07,531 --> 00:14:09,967 CENTRALIZE THE EXPERTISE IN 374 00:14:09,967 --> 00:14:13,537 THOSE RESOURCES AND DO IT MUCH 375 00:14:13,537 --> 00:14:16,540 MORE EFFICIENTLY AND EFFECTIVELY 376 00:14:16,540 --> 00:14:18,742 AND TAKE THIS OFF THE PLATE OF 377 00:14:18,742 --> 00:14:22,980 THE RESEARCHERS AND LET THEM 378 00:14:22,980 --> 00:14:25,248 FOCUS ON THEIR AIM. IT IS 379 00:14:25,248 --> 00:14:27,184 EFFICIENT AND SOLVES JUSTICE 380 00:14:27,184 --> 00:14:29,419 CONCERNS AND ALLOWS RESEARCHERS 381 00:14:29,419 --> 00:14:34,091 TO DO WHAT THEY'RE AIMING TO DO. 382 00:14:34,091 --> 00:14:37,961 SO, LET ME TRANSITION HERE. I 383 00:14:37,961 --> 00:14:40,897 MAINLY DO RESEARCH BUT SOMETIMES 384 00:14:40,897 --> 00:14:42,466 I HELP DO SOME POLICY THINGS TOO 385 00:14:42,466 --> 00:14:49,906 AND SO THE NIH INTRAMURAL IRB, 386 00:14:49,906 --> 00:14:52,576 ASKED ME AND MY COLLEAGUE SARA 387 00:14:52,576 --> 00:14:54,111 HULL TO CHAIR A WORKING GROUP TO 388 00:14:54,111 --> 00:14:59,383 COME UP WITH A GUIDANCE FOR HOW 389 00:14:59,383 --> 00:15:00,250 OUR INTRAMURAL PROGRAM SHOULD 390 00:15:00,250 --> 00:15:04,087 DEAL WITH THE GENETIC RESULTS 391 00:15:04,087 --> 00:15:05,322 PROGRAM. SO IT'S GOING TO BUILD 392 00:15:05,322 --> 00:15:07,324 ON SOME OF THE ARGUMENTS I JUST 393 00:15:07,324 --> 00:15:09,393 MADE. SO THIS IS OUR SORT OF, I 394 00:15:09,393 --> 00:15:10,894 CAN'T CALL IT A POLICY BECAUSE 395 00:15:10,894 --> 00:15:12,295 THAT'S NOT FAIR BUT THIS IS SORT 396 00:15:12,295 --> 00:15:15,298 OF OUR IRB'S RECOMMENDATIONS OR 397 00:15:15,298 --> 00:15:18,869 GUIDANCE TO EXPECTATIONS FOR 398 00:15:18,869 --> 00:15:21,905 RESEARCHERS. SO, THE FIRST 399 00:15:21,905 --> 00:15:24,541 ARGUMENT IS, IT'S TIME FOR 400 00:15:24,541 --> 00:15:25,609 SPECIFICITY, WE'VE EXISTED IN 401 00:15:25,609 --> 00:15:27,611 THIS SORT OF LIMBO FOR FIFTEEN 402 00:15:27,611 --> 00:15:29,179 YEARS WHERE WE SAID OH, THIS IS 403 00:15:29,179 --> 00:15:31,081 A HARD PROBLEM, HERE'S SOME 404 00:15:31,081 --> 00:15:32,916 INTERESTING IDEAS BUT NO ONE'S 405 00:15:32,916 --> 00:15:34,251 BEEN WILLING TO PUT PEN TO PAPER 406 00:15:34,251 --> 00:15:37,954 AND SAY WE NEED A FIRM 407 00:15:37,954 --> 00:15:39,589 WELL-DEFINED POLICY AND I THINK 408 00:15:39,589 --> 00:15:41,391 THAT'S WRONG. I THINK WE'RE FAR 409 00:15:41,391 --> 00:15:43,193 ENOUGH INTO THIS DEBATE THAT THE 410 00:15:43,193 --> 00:15:45,962 SORT OF WILD WEST LIKE EVERYONE 411 00:15:45,962 --> 00:15:47,030 DOING WHATEVER THEY WANT AND 412 00:15:47,030 --> 00:15:50,167 CASE-BY-CASE ANALYSIS, WE NEED 413 00:15:50,167 --> 00:15:51,735 TO MOVE PAST THAT. I THINK IT'S 414 00:15:51,735 --> 00:15:55,038 GREAT TO DEFER TO IRBS GENERALLY 415 00:15:55,038 --> 00:15:58,008 BUT IN THIS CASE, THE -- WE USED 416 00:15:58,008 --> 00:16:01,011 TO HAVE TWELVE IRBS INTRAMURALLY 417 00:16:01,011 --> 00:16:03,280 IN NIH AND THEY ALL HAD 418 00:16:03,280 --> 00:16:04,748 DIFFERENT WAYS OF DEALING WITH 419 00:16:04,748 --> 00:16:07,184 THIS PROBLEM. NOW WE HAVE A 420 00:16:07,184 --> 00:16:09,453 SINGLE IRB SO THAT'S BETTER BUT 421 00:16:09,453 --> 00:16:10,087 IT WOULD BE IDEAL FOR 422 00:16:10,087 --> 00:16:13,190 INSTITUTIONS OR EVEN THE WHOLE 423 00:16:13,190 --> 00:16:14,024 RESEARCH ENTERPRISE NATIONALLY 424 00:16:14,024 --> 00:16:15,792 OR INTERNATIONALLY TO TRY TO 425 00:16:15,792 --> 00:16:20,163 COME UP TO A CONSISTENT WAY OF 426 00:16:20,163 --> 00:16:26,203 DEALING WITH THIS. LIKE I SAID 427 00:16:26,203 --> 00:16:27,771 GUIDANCE IS VERY HIGH LEVEL AND 428 00:16:27,771 --> 00:16:29,406 SOMETIMES MAKING CONTROVERSIAL 429 00:16:29,406 --> 00:16:34,244 CLAIMS WHICH WE'RE AT THE POINT 430 00:16:34,244 --> 00:16:35,746 WHERE WE NEED TO MAKE THOSE 431 00:16:35,746 --> 00:16:36,747 CLAIMS. THE IRB ASKED US TO 432 00:16:36,747 --> 00:16:40,717 CREATE THIS POLICY. AND WE 433 00:16:40,717 --> 00:16:42,419 ARGUED THAT THERE IS A BROAD BUT 434 00:16:42,419 --> 00:16:44,354 SHALLOW OBLIGATION TO RETURN 435 00:16:44,354 --> 00:16:46,690 GENETIC RESULTS GENERATED IN 436 00:16:46,690 --> 00:16:47,624 RESEARCH, BROAD IN THE SENSE 437 00:16:47,624 --> 00:16:50,327 THAT IT APPLIES TO MOST RESEARCH 438 00:16:50,327 --> 00:16:51,394 PROTOCOLS. BUT SHALLOW IN THE 439 00:16:51,394 --> 00:16:53,697 SENSE THAT THERE'S A VERY HIGH 440 00:16:53,697 --> 00:16:55,932 BAR FOR THE KIND OF INFORMATION 441 00:16:55,932 --> 00:16:58,602 YOU HAVE TO RETURN. THE 442 00:16:58,602 --> 00:16:59,536 AMERICAN COLLEGE OF MEDICAL 443 00:16:59,536 --> 00:17:04,741 GENETICS AND GENOMICS ACMG 444 00:17:04,741 --> 00:17:06,777 CURATES A LIST THAT IT UPDATES 445 00:17:06,777 --> 00:17:11,481 EVERY YEAR OR SO AND RIGHT NOW 446 00:17:11,481 --> 00:17:14,050 HOW MANY? 83 THINGS ON THE LIST 447 00:17:14,050 --> 00:17:18,188 RIGHT NOW SO IT'S A VERY HIGH 448 00:17:18,188 --> 00:17:20,323 BAR FOR WHAT COUNTS AS THE KIND 449 00:17:20,323 --> 00:17:23,393 OF THING THAT NEEDS TO BE 450 00:17:23,393 --> 00:17:27,197 RETURNED. WHICH PROTOCOLS WE 451 00:17:27,197 --> 00:17:30,634 ARGUED THAT THE DEEPER THE 452 00:17:30,634 --> 00:17:31,935 CLINICAL RELATIONSHIP THE 453 00:17:31,935 --> 00:17:33,336 STRONGER THE PRESUMPTION IN 454 00:17:33,336 --> 00:17:38,542 FAVOR OF DISCLOSURE. SO IF YOU 455 00:17:38,542 --> 00:17:39,609 ARE JUST GOING SECONDARY 456 00:17:39,609 --> 00:17:41,945 RESEARCH WITH SAMPLES COLLECTED 457 00:17:41,945 --> 00:17:42,712 ELSEWHERE WHERE YOU HAVE NO 458 00:17:42,712 --> 00:17:43,680 RELATIONSHIP WITH THE 459 00:17:43,680 --> 00:17:44,447 PARTICIPANTS THAT'S NOT A CASE 460 00:17:44,447 --> 00:17:47,684 WHERE YOU NEED TO RETURN 461 00:17:47,684 --> 00:17:50,053 SECONDARY FINDINGS. IF YOU HAVE 462 00:17:50,053 --> 00:17:51,221 A MUCH MORE CLINICAL LIKE 463 00:17:51,221 --> 00:17:53,023 RELATIONSHIP WHERE YOU'RE SEEING 464 00:17:53,023 --> 00:17:55,759 SOMEONE EXTENSIVELY OVER TIME 465 00:17:55,759 --> 00:17:57,394 REPEAT WORKUPS MAYBE OR 466 00:17:57,394 --> 00:17:58,495 PROVIDING STANDARD OF CARE AS 467 00:17:58,495 --> 00:18:00,564 PART OF THE RESEARCH PROTOCOL, 468 00:18:00,564 --> 00:18:05,802 THAT'S THE KIND OF THING THAT 469 00:18:05,802 --> 00:18:07,938 PROBABLY WOULD INVOLVE SECONDARY 470 00:18:07,938 --> 00:18:09,940 FINDINGS. IT'S TRICKIER WHEN 471 00:18:09,940 --> 00:18:10,674 YOU TALK ABOUT MINIMAL 472 00:18:10,674 --> 00:18:12,542 INTERACTIONS LIKE ONE TIME 473 00:18:12,542 --> 00:18:14,978 INTERACTIONS. IT'S JUST A ONE 474 00:18:14,978 --> 00:18:16,446 TIME BLOOD DRAW MAYBE NOT BUT IF 475 00:18:16,446 --> 00:18:19,749 IT'S A ONE TIME OR TWO TIMEX 476 00:18:19,749 --> 00:18:30,293 TENSIVE WORKUP, MAYBE, WE'D LOVE 477 00:18:42,005 --> 00:18:43,940 TO, IT'D BE EASIER BUT AS 478 00:18:43,940 --> 00:18:46,409 FINDINGS EVOLVE IT CAN EXPAND. 479 00:18:46,409 --> 00:18:48,311 A FEW MORE THINGS ABOUT THE IRB 480 00:18:48,311 --> 00:18:50,213 EXPECTATIONS, THIS IS ONLY 481 00:18:50,213 --> 00:18:51,948 PERSPECTIVE, OLDER STUDIES, 482 00:18:51,948 --> 00:18:53,884 STUDIES THAT HAD ALREADY 483 00:18:53,884 --> 00:18:54,951 GENERATED SEQUENCE DATA DIDN'T 484 00:18:54,951 --> 00:18:56,453 NEED TO GO BACK AND ANALYZE AND 485 00:18:56,453 --> 00:18:58,255 RETURN SECONDARY FINDINGS. ONLY 486 00:18:58,255 --> 00:19:00,724 NEW STUDIES OR ONES THAT WERE 487 00:19:00,724 --> 00:19:02,859 BEING SUBSTANTIALLY REVISED. 488 00:19:02,859 --> 00:19:05,028 THIS IS IMPORTANT, THERE'S NO 489 00:19:05,028 --> 00:19:08,431 NEED TO GENERATE GENOMIC DATA 490 00:19:08,431 --> 00:19:09,900 BEYOND THAT NECESSARY TO ANSWER 491 00:19:09,900 --> 00:19:10,934 THE RESEARCH QUESTION SO IF 492 00:19:10,934 --> 00:19:12,569 YOU'RE ONLY INTERESTED IN A 493 00:19:12,569 --> 00:19:13,837 PARTICULAR REGION OF THE GENOME 494 00:19:13,837 --> 00:19:14,971 AND THAT'S ALL YOU NEED TO 495 00:19:14,971 --> 00:19:16,773 GENERATE TO ANSWER YOUR 496 00:19:16,773 --> 00:19:20,477 QUESTIONS, THERE IS NO 497 00:19:20,477 --> 00:19:21,745 OBLIGATION TO DO SECONDARY 498 00:19:21,745 --> 00:19:23,380 ANALYSIS. YOU DON'T HAVE TO GET 499 00:19:23,380 --> 00:19:26,116 A WHOLE GENOME SEQUENCE IF YOU 500 00:19:26,116 --> 00:19:28,952 DON'T NEED A WHOLE GENOME 501 00:19:28,952 --> 00:19:30,553 SEQUENCE AND I THINK A LOT OF 502 00:19:30,553 --> 00:19:32,455 INVESTIGATORS WERE WORRIED THAT 503 00:19:32,455 --> 00:19:33,890 THE IRB WAS GOING TO START 504 00:19:33,890 --> 00:19:35,425 REQUIRING THEM TO GENERATE ALL 505 00:19:35,425 --> 00:19:38,295 SORTS OF DATA THAT WASN'T EVEN 506 00:19:38,295 --> 00:19:39,329 CLOSE TO WHAT THEY NEED BUT 507 00:19:39,329 --> 00:19:42,232 THAT'S DECIDEDLY NOT THE CASE. 508 00:19:42,232 --> 00:19:43,667 AND AS I SAID, WE'RE 509 00:19:43,667 --> 00:19:44,567 DISTINGUISHING BETWEEN STUDIES 510 00:19:44,567 --> 00:19:48,305 BASED ON THE DEPTH OF THE 511 00:19:48,305 --> 00:19:50,073 CLINICAL RELATIONSHIP. SO, 512 00:19:50,073 --> 00:19:55,612 THAT'S SORT OF THE SKETCH OF THE 513 00:19:55,612 --> 00:19:58,014 POLICY. WHAT I WANT TO DO NOW 514 00:19:58,014 --> 00:20:01,551 IS TO RUN THROUGH RELATIVELY 515 00:20:01,551 --> 00:20:03,720 QUICKLY SOME RELATED ETHICAL AND 516 00:20:03,720 --> 00:20:06,690 POLICY ISSUES THAT COME UP. IF 517 00:20:06,690 --> 00:20:08,591 THAT'S THE 10,000 FOOT LEVEL 518 00:20:08,591 --> 00:20:11,027 THESE ARE SOME OF THE MORE 519 00:20:11,027 --> 00:20:11,895 INTERESTING SUBSTANTIVE 520 00:20:11,895 --> 00:20:13,930 PROBLEMS. SOME OF WHICH, WELL, 521 00:20:13,930 --> 00:20:15,932 I HAVE ANSWERS FOR ALL OF THEM. 522 00:20:15,932 --> 00:20:17,600 SOME OF WHICH PEOPLE AGREE WITH 523 00:20:17,600 --> 00:20:18,902 ME. SOME OF WHICH PEOPLE DON'T. 524 00:20:18,902 --> 00:20:21,604 BUT THESE ARE THE KINDS OF SORT 525 00:20:21,604 --> 00:20:23,506 OF STICKY PROBLEMS THAT WE ARE 526 00:20:23,506 --> 00:20:25,508 STILL WORKING THROUGH. OR NEED 527 00:20:25,508 --> 00:20:28,445 TO WORK THROUGH. SO, A FIRST 528 00:20:28,445 --> 00:20:30,480 ONE HAS TO DO WITH SEQUENCING 529 00:20:30,480 --> 00:20:32,983 DATA QUALITY. THIS IS A MORE 530 00:20:32,983 --> 00:20:35,018 TECHNICAL ONE. BUT AS I SAID, 531 00:20:35,018 --> 00:20:36,453 RESEARCHERS ARE ONLY REQUIRED TO 532 00:20:36,453 --> 00:20:37,654 GENERATE THE SEQUENCE DATA 533 00:20:37,654 --> 00:20:41,024 NECESSARY TO ANSWER THEIR 534 00:20:41,024 --> 00:20:43,760 QUESTION. BUT MORE THAN THAT, 535 00:20:43,760 --> 00:20:45,395 IF THE KIND OF QUALITY THEY 536 00:20:45,395 --> 00:20:46,830 NEED, THE SORT OF RESOLUTION OF 537 00:20:46,830 --> 00:20:51,368 THE DATA THAT THEY NEED, IF THE 538 00:20:51,368 --> 00:20:52,936 RESEARCH RESOLUTION IS LOWER 539 00:20:52,936 --> 00:20:54,337 THAN PERHAPS THE CLINICAL 540 00:20:54,337 --> 00:20:57,674 RESOLUTION IF YOU CAN'T USE THE 541 00:20:57,674 --> 00:21:00,577 DATA TO, IF IT'S NOT AMENABLE TO 542 00:21:00,577 --> 00:21:02,412 SECONDARY ANALYSIS, THEN THAT'S 543 00:21:02,412 --> 00:21:05,715 FINE. YOU DON'T HAVE TO PRODUCE 544 00:21:05,715 --> 00:21:09,486 DATA OF HIGHER QUALITY OR OF 545 00:21:09,486 --> 00:21:14,624 DIFFERENT TYPE. TO DO SECONDARY 546 00:21:14,624 --> 00:21:15,959 ANALYSIS. SECOND ISSUE IS 547 00:21:15,959 --> 00:21:17,627 EQUITY WITHIN A PROTOCOL THIS IS 548 00:21:17,627 --> 00:21:19,462 SOMETHING WE TALKED ABOUT A LOT 549 00:21:19,462 --> 00:21:21,798 IN OUR WORKING GROUP SO THERE'S 550 00:21:21,798 --> 00:21:26,569 A BASELINE EXPECTATION THAT'S 551 00:21:26,569 --> 00:21:27,137 SIMILARLY SITUATION, 552 00:21:27,137 --> 00:21:28,571 PARTICIPANTS WILL BE TREATED THE 553 00:21:28,571 --> 00:21:30,273 SAME BUT IT CAN BE ACCEPTABLE TO 554 00:21:30,273 --> 00:21:33,243 TREAT GROUPS WITHIN A PROTOCOL 555 00:21:33,243 --> 00:21:34,511 DIFFERENTLY SO LET'S IMAGINE YOU 556 00:21:34,511 --> 00:21:37,280 HAVE A PROTOCOL WHERE YOU'VE GOT 557 00:21:37,280 --> 00:21:39,082 ONE GROUP OF PEOPLE WHO HAVE AN 558 00:21:39,082 --> 00:21:40,917 ACTIVE DISEASE AND THEY'RE 559 00:21:40,917 --> 00:21:41,818 GETTING LOTS OF CLINICAL CARE 560 00:21:41,818 --> 00:21:43,820 AND BEING SEEN REPEATEDLY AND 561 00:21:43,820 --> 00:21:45,789 YOU HAVE ANOTHER GROUP OF PEOPLE 562 00:21:45,789 --> 00:21:48,792 WHO ARE MAYBE RELATIVES OF 563 00:21:48,792 --> 00:21:50,226 THAT -- OF THOSE PEOPLE WHO 564 00:21:50,226 --> 00:21:51,728 DON'T HAVE DISEASE BUT MAYBE 565 00:21:51,728 --> 00:21:54,464 HAVE SOME GENETIC MARKERS. AND 566 00:21:54,464 --> 00:21:56,399 ARE JUST BEING SEEN ONCE OR 567 00:21:56,399 --> 00:22:00,670 TWICE FOR A SORT OF CONTROL KIND 568 00:22:00,670 --> 00:22:02,539 OF PURPOSES. IT'S OKAY TO TREAT 569 00:22:02,539 --> 00:22:05,008 THOSE TWO GROUPS DIFFERENTLY. 570 00:22:05,008 --> 00:22:07,744 IF WE'RE FOCUSING ON CLINICAL 571 00:22:07,744 --> 00:22:08,945 RELATIONSHIP, IF DIFFERENT 572 00:22:08,945 --> 00:22:10,647 GROUPS WITHIN A PROTOCOL HAVE 573 00:22:10,647 --> 00:22:11,614 DIFFERENT CLINICAL RELATIONSHIPS 574 00:22:11,614 --> 00:22:14,117 WITH THE TEAM, THEN IT'S OKAY TO 575 00:22:14,117 --> 00:22:15,752 GIVE SOME OF THEM SECONDARY 576 00:22:15,752 --> 00:22:20,723 FINDINGS AND OTHERS NOT. AND 577 00:22:20,723 --> 00:22:22,859 PARTICULARLY REMEMBER WE'VE GOT 578 00:22:22,859 --> 00:22:24,527 AN ANCILLARY CARE MODEL WHERE 579 00:22:24,527 --> 00:22:25,795 ONE OF THE CONSIDERATIONS IS 580 00:22:25,795 --> 00:22:28,865 WHETHER THE RESEARCHERS ARE IN A 581 00:22:28,865 --> 00:22:31,067 UNIQUE POSITION TO GIVE 582 00:22:31,067 --> 00:22:33,036 SECONDARY FINDINGS. IF 583 00:22:33,036 --> 00:22:34,037 PARTICIPANTS HAVE ALREADY HAD 584 00:22:34,037 --> 00:22:35,004 CLINICAL SEQUENCING AND ALREADY 585 00:22:35,004 --> 00:22:37,107 HAVE ACCESS TO THIS INFORMATION, 586 00:22:37,107 --> 00:22:38,508 THEN THE RESEARCHERS SHOULDN'T 587 00:22:38,508 --> 00:22:40,410 BE THE ONES TO PROVIDE IT. THEY 588 00:22:40,410 --> 00:22:41,811 ALREADY HAVE GOTTEN IT THROUGH 589 00:22:41,811 --> 00:22:45,348 THE NORMAL COURSE OF THEIR 590 00:22:45,348 --> 00:22:47,350 MEDICAL CARE. AND I'LL TALK 591 00:22:47,350 --> 00:22:48,852 ABOUT THIS AGAIN LATER. THERE'S 592 00:22:48,852 --> 00:22:52,689 SOME END-OF-LIFE SITUATIONS 593 00:22:52,689 --> 00:22:55,692 WHERE THE BENEFICENCE REASONS TO 594 00:22:55,692 --> 00:22:58,962 PROVIDE THIS INFORMATION TO 595 00:22:58,962 --> 00:23:02,332 PEOPLE BECOME LESS SALIENT IF 596 00:23:02,332 --> 00:23:02,832 SOMEONE'S GOING TO DIE 597 00:23:02,832 --> 00:23:04,367 IMMINENTLY THE FACT THAT THEY 598 00:23:04,367 --> 00:23:06,269 HAVE RISK OF SOME SORT OF CANCER 599 00:23:06,269 --> 00:23:08,505 THAT'S GOING TO DEVELOP FIFTEEN 600 00:23:08,505 --> 00:23:10,607 YEARS ISN'T RELEVANT TO THEM. 601 00:23:10,607 --> 00:23:14,410 IT'S OKAY PARTICULARLY IN THE 602 00:23:14,410 --> 00:23:15,645 CANCER GENETICS REALM TO TREAT 603 00:23:15,645 --> 00:23:18,047 PEOPLE DIFFERENTLY FOR THAT 604 00:23:18,047 --> 00:23:18,648 REASON. BUT WHATEVER YOU'RE 605 00:23:18,648 --> 00:23:19,849 GOING TO DO YOU HAVE TO CLEARLY 606 00:23:19,849 --> 00:23:21,518 SET EXPECTATIONS AND EXPLAIN IT 607 00:23:21,518 --> 00:23:27,056 TO PEOPLE IN THE PROT PROTOCOL 608 00:23:27,056 --> 00:23:28,892 AND CONSENT FORM. 609 00:23:28,892 --> 00:23:30,326 REANALYSIS THIS QUESTION COMES 610 00:23:30,326 --> 00:23:31,794 UP A LOT. YOU'VE GOT THE 611 00:23:31,794 --> 00:23:34,230 GENOME, YOU'VE SEQUENCED, YOU DO 612 00:23:34,230 --> 00:23:36,032 THE ANALYSIS, SECONDARY ANALYSIS 613 00:23:36,032 --> 00:23:38,334 YOU FIND OUT THEY DO OR DON'T 614 00:23:38,334 --> 00:23:39,002 HAVE SOMETHING BUT OUR KNOWLEDGE 615 00:23:39,002 --> 00:23:41,638 ABOUT GENETICS IS CONSTANTLY 616 00:23:41,638 --> 00:23:43,206 EVOLVING AND THE QUESTION IS 617 00:23:43,206 --> 00:23:44,174 WHETHER RESEARCHERS HAVE AN 618 00:23:44,174 --> 00:23:46,342 OBLIGATION TO GO BACK TO THE 619 00:23:46,342 --> 00:23:47,677 SEQUENCE DATA THEY'VE ALREADY 620 00:23:47,677 --> 00:23:50,847 OBTAINED AND REANALYZE IT 621 00:23:50,847 --> 00:23:52,815 PERIODICALLY AS THE STATE OF 622 00:23:52,815 --> 00:23:55,051 GENOMIC KNOWLEDGE ADVANCES AND 623 00:23:55,051 --> 00:23:58,821 OUR ARGUMENT WAS NO, IN THE 624 00:23:58,821 --> 00:23:59,756 RESEARCH CONTEXT IT'S NOT 625 00:23:59,756 --> 00:24:00,790 CLINICAL CARE SO ONE TIME 626 00:24:00,790 --> 00:24:02,292 SECONDARY ANALYSIS IS 627 00:24:02,292 --> 00:24:03,059 SUFFICIENT. YOU'RE WELCOME TO 628 00:24:03,059 --> 00:24:05,028 DO MORE IF YOU HAVE THE 629 00:24:05,028 --> 00:24:07,730 RESOURCES AND THE INCLINATION 630 00:24:07,730 --> 00:24:10,133 BUT ONE TIME IS ENOUGH, AGAIN, 631 00:24:10,133 --> 00:24:13,436 CLEARLY EXPLAIN THIS THIS THE 632 00:24:13,436 --> 00:24:15,772 PROTOCOL AND THE CONSENT AND LET 633 00:24:15,772 --> 00:24:20,276 PEOPLE KNOW THAT, SORRY, THAT IF 634 00:24:20,276 --> 00:24:22,378 THEY WANT MORE CLINICAL GENOMIC 635 00:24:22,378 --> 00:24:23,313 TESTING THAT'S AVAILABLE TO THEM 636 00:24:23,313 --> 00:24:27,717 BUT OURZ -- OUTSIDE OF THE 637 00:24:27,717 --> 00:24:29,018 RESEARCH CONTEXT. 638 00:24:29,018 --> 00:24:31,387 NEGATIVE FINDINGS, THE ASMG LIST 639 00:24:31,387 --> 00:24:33,590 IS THE ONE PEOPLE USE MOST OFTEN 640 00:24:33,590 --> 00:24:37,460 AND I DON'T KNOW THE ACT -- 641 00:24:37,460 --> 00:24:39,762 EXACT NUMBER RIGHT NOW BUT 642 00:24:39,762 --> 00:24:42,031 ESTIMATES ARE 3-4% OF PEOPLE 643 00:24:42,031 --> 00:24:47,036 WILL HAVE ONE OF THOSE FINDINGS. 644 00:24:47,036 --> 00:24:49,005 IT'S NOT A HUGE NUMBER BUT 645 00:24:49,005 --> 00:24:53,576 SUBSTANTIAL THAT MEANS THAT 646 00:24:53,576 --> 00:24:55,411 97-94% OF PEOPLE AREN'T GOING TO 647 00:24:55,411 --> 00:24:56,913 HAVE A POSITIVE FINDING. 648 00:24:56,913 --> 00:24:58,248 THE QUESTION IS HOW DO YOU 649 00:24:58,248 --> 00:24:59,015 CONVEY THAT NEGATIVE INFORMATION 650 00:24:59,015 --> 00:25:00,850 TO PEOPLE AND WE ARGUED IN OUR 651 00:25:00,850 --> 00:25:03,152 REPORT THAT YOU DON'T NEED TO 652 00:25:03,152 --> 00:25:05,822 GENERATE AND CONVEY A NEGATIVE 653 00:25:05,822 --> 00:25:06,389 FINDINGS REPORT. THIS IS 654 00:25:06,389 --> 00:25:07,523 SOMETHING YOU DO IN CLINICAL 655 00:25:07,523 --> 00:25:10,994 CARE IF YOU HAVE CLINICAL 656 00:25:10,994 --> 00:25:12,095 JEANEGENETIC TESTING AND NOTHINE 657 00:25:12,095 --> 00:25:14,230 BACK YOU'D GET A REPORT SAYING 658 00:25:14,230 --> 00:25:15,732 NOTHING CAME BACK. BUT WE SAID 659 00:25:15,732 --> 00:25:17,066 THAT'S TOO MUCH WORK FOR THE 660 00:25:17,066 --> 00:25:18,768 RESEARCH ENTERPRISE. LIKE WE 661 00:25:18,768 --> 00:25:21,471 DON'T -- WE NEED TO CLEARLY 662 00:25:21,471 --> 00:25:22,872 EXPLAIN TO PEOPLE THAT THEY'RE 663 00:25:22,872 --> 00:25:24,140 ONLY GOING TO BE CONTACTED IF 664 00:25:24,140 --> 00:25:25,408 THEY HAVE A POSITIVE FINDING AND 665 00:25:25,408 --> 00:25:28,311 NOT TO ASSUME THAT THEY'VE GOT A 666 00:25:28,311 --> 00:25:31,748 CLEAN BILL OF HEALTH BUT THAT 667 00:25:31,748 --> 00:25:39,689 THE GOING THROUGH THE EXTRA STEP 668 00:25:39,689 --> 00:25:43,092 OF A NEGATIVE REPORT IS USING 669 00:25:43,092 --> 00:25:44,694 TOO MANY RESOURCES. NOW WITH 670 00:25:44,694 --> 00:25:46,696 NORMATIVE QUESTIONS, WHAT DO YOU 671 00:25:46,696 --> 00:25:51,167 DO WHEN YOU'VE GOT A PROBAND WHO 672 00:25:51,167 --> 00:25:54,537 IS DECEASED BUT THE INFORMATION 673 00:25:54,537 --> 00:25:55,738 IN THE GENOME COULD BE RELEVANT 674 00:25:55,738 --> 00:26:01,644 TO THEIR RELATIVES? AND SO 675 00:26:01,644 --> 00:26:04,814 I'VE -- I HAVE THE PAPER HERE, 676 00:26:04,814 --> 00:26:07,317 YEAH, WE WROTE A PAPER, THE 677 00:26:07,317 --> 00:26:11,020 FORMER FELLOW IF ANY OF YOU 678 00:26:11,020 --> 00:26:12,455 WATCH JEOPARDY, BEN CHAN, HE HAD 679 00:26:12,455 --> 00:26:13,756 A RUN THERE FOR A WHILE THAT GOT 680 00:26:13,756 --> 00:26:17,026 A LOT OF ATTENTION, HE'S THE 681 00:26:17,026 --> 00:26:19,696 FIRST AUTHOR ON THIS PAPER SO WE 682 00:26:19,696 --> 00:26:22,598 ARGUED THAT WHILE OBLIGATIONS TO 683 00:26:22,598 --> 00:26:23,733 RELATIVES HAVE TO BE LESS THAN 684 00:26:23,733 --> 00:26:25,968 THE OBLIGATIONS YOU HAVE TO TO 685 00:26:25,968 --> 00:26:28,204 THE PROBANDS, THERE CAN BE CASE 686 00:26:28,204 --> 00:26:28,805 WHERE IS THE CLINICAL 687 00:26:28,805 --> 00:26:29,706 INFORMATION IS IMPORTANT ENOUGH 688 00:26:29,706 --> 00:26:31,240 THAT YOU'D WANT TO TRY TO GET IT 689 00:26:31,240 --> 00:26:32,275 TO THEM. 690 00:26:32,275 --> 00:26:36,212 AND SO, BUT WE ARGUE THAT THAT'S 691 00:26:36,212 --> 00:26:37,880 A VERY HIGH BAR AND YOU SHOULD 692 00:26:37,880 --> 00:26:40,483 ONLY BE RETURNING FINDINGS WHEN 693 00:26:40,483 --> 00:26:43,219 THE INFORMATION HAS POTENTIAL 694 00:26:43,219 --> 00:26:45,588 DIRECT AND REALLY SUBSTANTIAL 695 00:26:45,588 --> 00:26:46,689 IMPLICATIONS FOR THEIR HEALTH 696 00:26:46,689 --> 00:26:47,657 AND THE DEPTH OF THE 697 00:26:47,657 --> 00:26:48,658 RELATIONSHIP WITH THE PROBAND 698 00:26:48,658 --> 00:26:50,626 AND THEIR FAMILY IS RELEVANT 699 00:26:50,626 --> 00:26:52,729 HERE AS OUR PROTOCOL RESOURCES, 700 00:26:52,729 --> 00:26:55,598 THIS IS NOT AN EXPANSIVE 701 00:26:55,598 --> 00:26:57,266 OBLIGATION. AND REALLY A 702 00:26:57,266 --> 00:26:58,468 REASONABLE EFFORT STANDARD IS 703 00:26:58,468 --> 00:26:59,502 SUFFICIENT BUT YOU SHOULD, YOU 704 00:26:59,502 --> 00:27:01,170 KNOW, DOCUMENT WHAT YOU DID, 705 00:27:01,170 --> 00:27:02,538 THERE'S NO EXPECTATION HERE THAT 706 00:27:02,538 --> 00:27:07,243 YOU'VE GOT TO HIRE A PRIVATE 707 00:27:07,243 --> 00:27:10,213 INVESTIGATOR AND RETURN 708 00:27:10,213 --> 00:27:11,748 INFORMATION TO THEM BUT IF YOU 709 00:27:11,748 --> 00:27:14,317 COULD DO SO EASILY AND IT'S 710 00:27:14,317 --> 00:27:16,185 REALLY IMPORTANT IT'S A GOOD 711 00:27:16,185 --> 00:27:17,720 THING TO DO. ANOTHER BIG 712 00:27:17,720 --> 00:27:20,556 QUESTION THAT WE'VE BEEN 713 00:27:20,556 --> 00:27:23,025 STRUGGLING WITH IS HOW TO THINK 714 00:27:23,025 --> 00:27:23,860 ABOUT SETTINGS THAT HAVE 715 00:27:23,860 --> 00:27:26,262 DIFFERENT STANDARDS OF CARE OR 716 00:27:26,262 --> 00:27:28,464 DIFFERENT ACCESS TO HEALTH CARE 717 00:27:28,464 --> 00:27:30,199 RESOURCES. SO THE QUESTION IS, 718 00:27:30,199 --> 00:27:32,168 IS THERE A DUTY TO RETURN 719 00:27:32,168 --> 00:27:34,637 FINDINGS IN LOW RESOURCE 720 00:27:34,637 --> 00:27:36,739 SETTINGS WHERE BENEFIT WILL BE 721 00:27:36,739 --> 00:27:38,641 SUBSTANTIALLY LESS CERTAIN? SO, 722 00:27:38,641 --> 00:27:40,576 TO RETURN TO THE BREAST CANCER 723 00:27:40,576 --> 00:27:42,578 CASE, IF YOU FOUND OUT THAT 724 00:27:42,578 --> 00:27:48,117 SOMEONE HAD A BRCA VARIANT BUT 725 00:27:48,117 --> 00:27:49,952 LIVE IN A COUNTRY WHERE THERE 726 00:27:49,952 --> 00:27:54,557 ARE NO SURGICAL SUITES THAT CAN 727 00:27:54,557 --> 00:27:55,725 TREAT BREAST CANCER SHOULD YOU 728 00:27:55,725 --> 00:27:58,327 RETURN THIS INFORMATION IN THAT 729 00:27:58,327 --> 00:28:01,230 KIND OF SETTING? CALLED THE 730 00:28:01,230 --> 00:28:01,998 ACTIONABILITY PROBLEM. SO YOU 731 00:28:01,998 --> 00:28:03,766 ONLY WANT TO RETURN THINGS, ONE 732 00:28:03,766 --> 00:28:05,835 OF THE CORE REASONS WE'RE 733 00:28:05,835 --> 00:28:09,772 RETURNING THINGS WHERE WE HAVE 734 00:28:09,772 --> 00:28:14,811 THE FEEL, THIS OBLIGATION SO 735 00:28:14,811 --> 00:28:18,247 PEOPLE CAN IMPROVE THEIR HEALTH. 736 00:28:18,247 --> 00:28:19,282 BUT IF THEY CAN'T BECAUSE THEY 737 00:28:19,282 --> 00:28:20,550 CAN'T ACCESS RESOURCES WHAT DO 738 00:28:20,550 --> 00:28:21,818 YOU DO? 739 00:28:21,818 --> 00:28:26,956 SOME PEOPLE HAVE ARGUED THAT YOU 740 00:28:26,956 --> 00:28:27,890 SHOULD ONLY RETURN THINGS WHEN 741 00:28:27,890 --> 00:28:29,025 THEY'RE ACTIONABLE IN THE 742 00:28:29,025 --> 00:28:30,660 COMMUNITY WHERE THE PERSON 743 00:28:30,660 --> 00:28:34,997 LIVES. I DISAGREE. -- WE WROTE 744 00:28:34,997 --> 00:28:36,332 ANOTHER PAPER ABOUT THIS. 745 00:28:36,332 --> 00:28:39,769 BUT I THINK THE ARGUMENT IS WE 746 00:28:39,769 --> 00:28:42,872 SHOULD DEFAULT TO RETURNING 747 00:28:42,872 --> 00:28:46,008 RESEARCH RESULTS GENETIC 748 00:28:46,008 --> 00:28:46,909 RESEARCH RESULTS IN THESE 749 00:28:46,909 --> 00:28:47,810 SETTINGS FOR A NUMBER OF REASONS 750 00:28:47,810 --> 00:28:50,580 I'M HAPPY TO GET INTO IF PEOPLE 751 00:28:50,580 --> 00:28:51,247 ARE INTERESTED BUT THERE ARE A 752 00:28:51,247 --> 00:28:54,250 COUPLE OF CAVEATS, A COUPLE OF 753 00:28:54,250 --> 00:28:55,117 REASONS THAT THIS CASE IS 754 00:28:55,117 --> 00:28:59,021 DIFFERENT, FIRST BECAUSE, 755 00:28:59,021 --> 00:28:59,622 COMMUNITIES CULTURES, HAVE 756 00:28:59,622 --> 00:29:01,357 DIFFERENT RELATIONSHIPS WITH 757 00:29:01,357 --> 00:29:03,726 GENETIC INFORMATION. IT'S 758 00:29:03,726 --> 00:29:05,628 APPROPRIATE TO CONSULT WITH 759 00:29:05,628 --> 00:29:07,930 THOSE XHTSZ COMMUNITIES BEFORE 760 00:29:07,930 --> 00:29:09,832 YOU START RETURNING THE FINDINGS 761 00:29:09,832 --> 00:29:11,734 TO SEE IF THESE ARE ACTUALLY 762 00:29:11,734 --> 00:29:12,134 WANTED. 763 00:29:12,134 --> 00:29:13,836 AND TWO, I WILL TALK ABOUT THE 764 00:29:13,836 --> 00:29:17,039 RIGHT NOT TO KNOW IN A MINUTE 765 00:29:17,039 --> 00:29:19,909 BUT I WILL TIP MY HAND I'M A 766 00:29:19,909 --> 00:29:21,210 SKEPTIC. THIS IS ONE CASE WHERE 767 00:29:21,210 --> 00:29:23,980 I THINK IT'S IMPORTANT TO ASK 768 00:29:23,980 --> 00:29:26,415 PEOPLE, INDIVIDUALS, WHETHER 769 00:29:26,415 --> 00:29:27,350 THEY WANT TO KNOW THIS 770 00:29:27,350 --> 00:29:28,518 INFORMATION OR NOT BECAUSE IF 771 00:29:28,518 --> 00:29:30,086 YOU CAN'T DO ANYTHING ABOUT IT, 772 00:29:30,086 --> 00:29:32,388 THAT IS A CASE WHERE SOMEONE 773 00:29:32,388 --> 00:29:37,460 MIGHT OR MIGHT NOT WANT TO KNOW. 774 00:29:37,460 --> 00:29:41,931 ALL RIGHT. A FEW MORE. LEGACY 775 00:29:41,931 --> 00:29:43,132 SAMPLES. THIS IS WHAT I CALL 776 00:29:43,132 --> 00:29:45,334 THE FREEZER PROBLEM. SO A LOT 777 00:29:45,334 --> 00:29:47,770 OF PROTOCOLS HAVE THESE SAMPLES 778 00:29:47,770 --> 00:29:49,939 THAT WERE COLLECTED DECADES AGO 779 00:29:49,939 --> 00:29:52,508 WITH SORT OF MINIMAL INFORMED 780 00:29:52,508 --> 00:29:56,078 CONSENT BEFORE EVEN GENOMIC 781 00:29:56,078 --> 00:29:57,113 SEQUENCING WAS A POSSIBILITY AND 782 00:29:57,113 --> 00:29:58,314 THEN THEY WANT TO GO BACK TO 783 00:29:58,314 --> 00:30:00,616 THESE SAMPLES. SOMETIMES 784 00:30:00,616 --> 00:30:01,918 THEY'RE VERY VALUABLE 785 00:30:01,918 --> 00:30:03,152 COLLECTIONS AND SEQUENCE THEM 786 00:30:03,152 --> 00:30:04,387 NOW THAT THE TECHNOLOGY EXISTS 787 00:30:04,387 --> 00:30:06,255 AND THE QUESTION IS WHAT DO YOU 788 00:30:06,255 --> 00:30:08,791 DO ABOUT GENOMIC FINDINGS WHEN 789 00:30:08,791 --> 00:30:11,994 YOU SEQUENCE THEM? OFTENTIMES 790 00:30:11,994 --> 00:30:13,496 THEY HAVE GENERAL LANGUAGE IN 791 00:30:13,496 --> 00:30:14,764 THE CONSENT LIKE WE WANT TO DO 792 00:30:14,764 --> 00:30:18,000 GENETIC RESEARCH THAT DOESN'T 793 00:30:18,000 --> 00:30:18,834 MENTION ANYTHING ABOUT 794 00:30:18,834 --> 00:30:20,503 SEQUENCING OR SECONDARY FINDINGS 795 00:30:20,503 --> 00:30:23,039 OR ANYTHING. IS IT ETHICAL TO 796 00:30:23,039 --> 00:30:24,907 ALLOW RESEARCHERS TO 797 00:30:24,907 --> 00:30:26,475 RECONSEQUENCE THESE? I HAVE A 798 00:30:26,475 --> 00:30:30,880 LOT OF THOUGHTS ON THIS BUT 799 00:30:30,880 --> 00:30:33,182 GENERALLY MY VIEW IS THAT REALLY 800 00:30:33,182 --> 00:30:35,284 WE SHOULD ONLY BE THINKING 801 00:30:35,284 --> 00:30:36,819 PROSPECTIVELY THAT IT'S FINE FOR 802 00:30:36,819 --> 00:30:40,523 PEOPLE TO USE THESE SAMPLES AND 803 00:30:40,523 --> 00:30:42,892 SEQUENCE THEM BUT THAT WE 804 00:30:42,892 --> 00:30:44,327 SHOULDN'T BE RETURNING 805 00:30:44,327 --> 00:30:45,561 INCIDENTAL FINDINGS IN THESE 806 00:30:45,561 --> 00:30:50,132 CASES A LOT OF TIMES THESE 807 00:30:50,132 --> 00:30:50,933 PEOPLE ARE DECEASED OR 808 00:30:50,933 --> 00:30:53,035 IMPOSSIBLE TO FIND OR THEY'D BE 809 00:30:53,035 --> 00:30:54,604 SHOCKED TO LEARN THAT THESE 810 00:30:54,604 --> 00:30:56,639 THINGS WERE BEING DONE AND SO I 811 00:30:56,639 --> 00:30:58,808 THINK IT'S OKAY IF YOU'VE GOT 812 00:30:58,808 --> 00:30:59,976 CONSENT TO USE THESE SAMPLES 813 00:30:59,976 --> 00:31:02,278 IT'S FINE TO SEQUENCE THEM BUT 814 00:31:02,278 --> 00:31:03,746 THAT WE DON'T NEED TO BE 815 00:31:03,746 --> 00:31:07,750 RETURNING SECONDARY FINDINGS IN 816 00:31:07,750 --> 00:31:08,517 THESE KINDS OF CASES. THERE 817 00:31:08,517 --> 00:31:11,020 MIGHT BE SOME EXCEPTIONS TO THAT 818 00:31:11,020 --> 00:31:13,322 RULE WHERE IT'S A SORT OF VERY 819 00:31:13,322 --> 00:31:15,925 DEFINED SMALL SET OF SAMPLES AND 820 00:31:15,925 --> 00:31:17,793 WE COULD RECONTACT THEM BUT 821 00:31:17,793 --> 00:31:19,295 GENERALLY UNLESS THAT'S THE CASE 822 00:31:19,295 --> 00:31:22,999 I DON'T THINK WE HAVE TO RETURN 823 00:31:22,999 --> 00:31:24,967 FINDINGS. THIS IS ANOTHER 824 00:31:24,967 --> 00:31:26,669 TECHNICAL ONE THAT I ONLY 825 00:31:26,669 --> 00:31:27,803 INCLUDE BECAUSE I AM -- I'D GET 826 00:31:27,803 --> 00:31:31,340 A QUESTION ABOUT IT IF I DIDN'T. 827 00:31:31,340 --> 00:31:34,610 CLEA THE CLINICAL LABORATORY 828 00:31:34,610 --> 00:31:36,979 IMPROVEMENT ACT GOVERNS HOW THE 829 00:31:36,979 --> 00:31:40,149 SORT OF QUALITY CONTROL IN LABS. 830 00:31:40,149 --> 00:31:42,218 AND THERE'S THIS RULE UNDER CLEA 831 00:31:42,218 --> 00:31:43,719 THAT YOU CAN'T TURN INFORMATION 832 00:31:43,719 --> 00:31:47,023 THAT WILL BE USED FOR CLINICAL 833 00:31:47,023 --> 00:31:48,457 DECISION-MAKING WITHOUT HAVING 834 00:31:48,457 --> 00:31:51,827 VALIDATED IT IN A CLIA COMPLIANT 835 00:31:51,827 --> 00:31:56,899 MANNER AND SO RESEARCHERS WHO 836 00:31:56,899 --> 00:31:58,367 DON'T LIVE IN THE CLINICAL 837 00:31:58,367 --> 00:31:59,735 TESTING SPACE SAY DO I HAVE TO 838 00:31:59,735 --> 00:32:00,903 DO THAT? 839 00:32:00,903 --> 00:32:03,072 AND ANSWER IS YES, I HAVE TALKED 840 00:32:03,072 --> 00:32:05,808 TO VARIOUS LAWYERS IN OUR 841 00:32:05,808 --> 00:32:10,346 INSTITUTION, IN HHS, THAT'S 842 00:32:10,346 --> 00:32:12,448 ACTUALLY CMS, THAT GOVERNORS 843 00:32:12,448 --> 00:32:14,950 CLIA AND THE ANSWER IS, YES, THE 844 00:32:14,950 --> 00:32:17,753 LAW DOESN'T HAVE ANY WIGGLE ROOM 845 00:32:17,753 --> 00:32:20,656 FOR RESEARCHERS IF YOU GIVE THEM 846 00:32:20,656 --> 00:32:23,025 SOMETHING BACK THAT THEY COULD 847 00:32:23,025 --> 00:32:24,460 PLAUSIBLY USE TO MAKE DECISIONS 848 00:32:24,460 --> 00:32:25,327 YOU HAVE TO VALIDATE IT BUT THIS 849 00:32:25,327 --> 00:32:28,097 IS GETTING EASIER AND EASIER AND 850 00:32:28,097 --> 00:32:29,098 THIS SHOULDN'T BE A BARRIER, 851 00:32:29,098 --> 00:32:31,567 IT'S NOT THAT EXPENSIVE AND IF 852 00:32:31,567 --> 00:32:32,868 YOU PLAN AHEAD THE BIG THING IS 853 00:32:32,868 --> 00:32:37,573 YOU NEED A SECOND SAMPLE TO SAL 854 00:32:37,573 --> 00:32:39,141 VALIDATE SO IF YOU HAVE A SECOND 855 00:32:39,141 --> 00:32:41,043 SAMPLE YOU CAN HAVE IT IN YOUR 856 00:32:41,043 --> 00:32:42,178 BACK POCKET TO GO VALIDATE 857 00:32:42,178 --> 00:32:43,746 BEFORE YOU RETURN RESULTS TO 858 00:32:43,746 --> 00:32:48,884 PARTICIPANTS. PEDIATRIC 859 00:32:48,884 --> 00:32:51,187 FINDINGS, THERE'S A WHOLE I'VE 860 00:32:51,187 --> 00:32:52,755 WRITTEN A LOT ABOUT THIS. I 861 00:32:52,755 --> 00:32:53,823 DON'T MEAN TO TO GET INTO TOO 862 00:32:53,823 --> 00:32:54,957 MUCH DETAIL HERE BUT THERE'S 863 00:32:54,957 --> 00:32:56,892 SOME REALLY INTERESTING POINTS, 864 00:32:56,892 --> 00:32:57,960 THERE'S A DEBATE ABOUT THE RIGHT 865 00:32:57,960 --> 00:33:01,063 TO AN OPEN FUTURE IF YOU'RE 866 00:33:01,063 --> 00:33:04,100 DOING PEDIATRIC GENETIC 867 00:33:04,100 --> 00:33:05,701 RESEARCH. THE IDEA IS THE RIGHT 868 00:33:05,701 --> 00:33:07,570 TO AN OPEN FUTURE IS AN ARGUMENT 869 00:33:07,570 --> 00:33:10,773 THAT WE SHOULD TRY TO PRESERVE A 870 00:33:10,773 --> 00:33:13,976 CHILD'S ABILITY TO DECIDE FOR 871 00:33:13,976 --> 00:33:15,244 THEMSELVES WHEN THEY'RE AN ADULT 872 00:33:15,244 --> 00:33:16,345 AS MUCH AS POSSIBLE AND 873 00:33:16,345 --> 00:33:17,980 SHOULDN'T BE GIVING THEM GENETIC 874 00:33:17,980 --> 00:33:19,715 INFORMATION THAT WHEN THEY'RE 25 875 00:33:19,715 --> 00:33:23,719 THEY MIGHT NOT WANT TO KNOW. I 876 00:33:23,719 --> 00:33:27,189 THINK THERE'S SORT OF EVOLVING 877 00:33:27,189 --> 00:33:29,291 VIEWS ON THIS. PEOPLE ARE, FOR 878 00:33:29,291 --> 00:33:31,026 THE FIRST, I DON'T KNOW, FIFTEEN 879 00:33:31,026 --> 00:33:33,696 YEARS OF THE GENETIC RESEARCH 880 00:33:33,696 --> 00:33:39,769 ERA THIS WAS SORT OF DOGMA. BUT 881 00:33:39,769 --> 00:33:45,541 NOW THE SECOND ARTICLE IS A SORT 882 00:33:45,541 --> 00:33:46,642 OF PROFESSIONAL SOCIETY GUIDANCE 883 00:33:46,642 --> 00:33:48,511 DOCUMENT I WORKED ON WHERE WE 884 00:33:48,511 --> 00:33:50,846 STARTED WALKING AWAY FROM THE 885 00:33:50,846 --> 00:33:54,350 IDEA THAT THIS RIGHT TO AN OPEN 886 00:33:54,350 --> 00:33:59,188 FUTURE IS OF SUCH PARAMOUNT 887 00:33:59,188 --> 00:34:01,490 IMPORTANCE AND THAT THERE CAN BE 888 00:34:01,490 --> 00:34:03,125 CONDITIONS WHERE IT'S OKAY TO 889 00:34:03,125 --> 00:34:04,326 GIVE FAMILIES ACCESS TO 890 00:34:04,326 --> 00:34:06,629 INFORMATION ABOUT THEIR KID THAT 891 00:34:06,629 --> 00:34:08,764 WOULDN'T BE RELEVANT UNTIL THEIR 892 00:34:08,764 --> 00:34:10,900 ADULT YEARS. RE-CONSENT AT THE 893 00:34:10,900 --> 00:34:13,369 AGE OF MAJORITY IS ANOTHER BIG 894 00:34:13,369 --> 00:34:16,205 ONE YOU'VE SEQUENCED SOMEONE'S 895 00:34:16,205 --> 00:34:17,873 GENOME WHEN THEY'RE A KID, THEY 896 00:34:17,873 --> 00:34:20,142 TURN 18, NOW WHAT DO YOU DO? DO 897 00:34:20,142 --> 00:34:21,977 YOU HAVE TO GO BACK TO THEM TO 898 00:34:21,977 --> 00:34:23,813 GET RE-CONSENT TO CONTINUE USING 899 00:34:23,813 --> 00:34:26,482 THEIR SAMPLES? TO RETURN 900 00:34:26,482 --> 00:34:27,750 RESULTS? SOME COLLEAGUES AND I 901 00:34:27,750 --> 00:34:30,019 HAVE ARGUED THAT YOU DON'T HAVE 902 00:34:30,019 --> 00:34:32,154 TO DO THAT THIS IS ONE WHERE 903 00:34:32,154 --> 00:34:34,190 WE'RE VERY MUCH IN THE MINORITY. 904 00:34:34,190 --> 00:34:36,692 GENERALLY THE POLICY IS YOU GO 905 00:34:36,692 --> 00:34:39,061 TO IRB AND THEY ASK FOR -- YOU 906 00:34:39,061 --> 00:34:42,398 ASK THEM FOR AN EXCEPTION SO 907 00:34:42,398 --> 00:34:43,499 FUNCTIONALLY THAT THE CASE IS 908 00:34:43,499 --> 00:34:45,467 THAT YOU DON'T HAVE TO GET 909 00:34:45,467 --> 00:34:47,036 RE-CONSENT BUT WE DON'T FOR 910 00:34:47,036 --> 00:34:48,304 VARIOUS REASONS WE DON'T THINK 911 00:34:48,304 --> 00:34:50,573 YOU EVEN NEED TO TAKE THAT STEP. 912 00:34:50,573 --> 00:34:52,775 AND THIS ATTRIBUTED PARENT 913 00:34:52,775 --> 00:34:55,978 DAMAGE AND THIS COMES UP 914 00:34:55,978 --> 00:34:57,346 SURPRISINGLY FREQUENTLY. 915 00:34:57,346 --> 00:34:58,781 THIS IS ANOTHER EARLIER CASE I 916 00:34:58,781 --> 00:35:03,752 HAD IN MY ETHICS CONSULTATION 917 00:35:03,752 --> 00:35:05,020 CAREER AND YOU'RE DOING TESTING 918 00:35:05,020 --> 00:35:06,722 AND COMPARING GENOMES OF THE KID 919 00:35:06,722 --> 00:35:08,090 AND THEIR PARENTS AND IT'S 920 00:35:08,090 --> 00:35:10,092 OFTENTIMES YOU FIND THAT THE 921 00:35:10,092 --> 00:35:10,793 PARENTS AREN'T GENETICALLY 922 00:35:10,793 --> 00:35:12,094 RELATED TO THE KID OR THE FATHER 923 00:35:12,094 --> 00:35:15,197 ISN'T RELATED TO THE KID. AND 924 00:35:15,197 --> 00:35:19,468 WHAT DO YOU DO? DO YOU DISCLOSE 925 00:35:19,468 --> 00:35:20,236 THAT INFORMATION TO PEOPLE? 926 00:35:20,236 --> 00:35:22,805 I'VE ARGUED, NO, YOU DON'T. BUT 927 00:35:22,805 --> 00:35:26,308 THIS IS ONE WHERE I THINK 928 00:35:26,308 --> 00:35:27,676 REASONABLE PEOPLE COULD 929 00:35:27,676 --> 00:35:29,879 DISAGREE. I'VE GOT ABOUT TEN 930 00:35:29,879 --> 00:35:32,548 MINUTES, SO I AM GOING TO MOVE 931 00:35:32,548 --> 00:35:34,316 ONTO THE LAST BIG POINT THAT I'M 932 00:35:34,316 --> 00:35:36,585 GOING TO SET UP AND THEN LEAVE 933 00:35:36,585 --> 00:35:38,020 TIME FOR QUESTIONS IF PEOPLE 934 00:35:38,020 --> 00:35:39,655 WANT TO DISCUSS IT. THIS IS 935 00:35:39,655 --> 00:35:43,726 SOMETHING I'VE LOOKED AT QUITE A 936 00:35:43,726 --> 00:35:51,734 BIT AND REALLY A TOPIC THAT WAS 937 00:35:51,734 --> 00:35:55,738 VERY CONTROVERSIAL AND SORT 938 00:35:55,738 --> 00:35:59,041 OF -- THE VEHEMENCE THAT PEOPLE 939 00:35:59,041 --> 00:36:00,442 THOUGHT ABOUT THIS TOPIC IS 940 00:36:00,442 --> 00:36:02,311 SURPRISING TO ME WHICH IS WHY I 941 00:36:02,311 --> 00:36:03,746 HAVE CHOSEN TO DIVE INTO IT AND 942 00:36:03,746 --> 00:36:05,481 REALLY EXPLORE IT IN A LOT OF 943 00:36:05,481 --> 00:36:07,683 DEPTH. LET ME GIVE YOU A CASE 944 00:36:07,683 --> 00:36:10,586 TO SET THIS UP. SO IMAGINE P IS 945 00:36:10,586 --> 00:36:14,123 HAVING HER GENOME SEQUENCED. 946 00:36:14,123 --> 00:36:14,723 COULD BE RESEARCH, COULD BE 947 00:36:14,723 --> 00:36:17,393 CLINICAL CARE, THIS IS RESEARCH 948 00:36:17,393 --> 00:36:20,229 ETHICS CLASS SO FOR RESEARCH 949 00:36:20,229 --> 00:36:21,630 PURPOSES, AND DURING THE 950 00:36:21,630 --> 00:36:23,032 INFORMED CONSENT PROCESS THERE'S 951 00:36:23,032 --> 00:36:26,635 A CHECK BOX IT SAYS WE MIGHT 952 00:36:26,635 --> 00:36:29,038 FIND IMPORTANT MEDICAL 953 00:36:29,038 --> 00:36:30,239 INFORMATION ONCE SEQUENCING YOUR 954 00:36:30,239 --> 00:36:32,574 GENOME WOULD YOU WANT TO KNOW IT 955 00:36:32,574 --> 00:36:35,144 YES OR NO. SHE SAYS NO. BUT 956 00:36:35,144 --> 00:36:38,480 DURING THEIR ANALYSIS THE 957 00:36:38,480 --> 00:36:39,248 RESEARCHERS FIND EVIDENCE OF 958 00:36:39,248 --> 00:36:44,486 HIGH GENETIC RISK FOR NON POLYP 959 00:36:44,486 --> 00:36:46,889 FORMING COLON CANCER WHICH IS 960 00:36:46,889 --> 00:36:48,657 THE KIND OF THING IF YOU DON'T 961 00:36:48,657 --> 00:36:51,060 CATCH IT IT'S PRETTY UNIFORMLY 962 00:36:51,060 --> 00:36:52,728 FATAL BUT IF YOU DO KNOW YOU 963 00:36:52,728 --> 00:36:54,129 HAVE GENETIC RISK THERE ARE 964 00:36:54,129 --> 00:36:55,731 ENHANCED SCREENING TECHNIQUES 965 00:36:55,731 --> 00:36:57,232 THAT YOU CAN USE AND YOU CAN 966 00:36:57,232 --> 00:36:58,367 CATCH IT EARLY AND IT'S CURABLE 967 00:36:58,367 --> 00:37:01,670 AND SO LIKE KNOWING THAT YOU 968 00:37:01,670 --> 00:37:03,005 HAVE THIS GENETIC RISK IS REALLY 969 00:37:03,005 --> 00:37:03,639 IMPORTANT. IT'S LITERALLY A 970 00:37:03,639 --> 00:37:06,408 MATTER OF LIFE AND DEATH. AND 971 00:37:06,408 --> 00:37:07,743 SO THE QUESTION IS, SHE CHECKED 972 00:37:07,743 --> 00:37:09,979 THE NO BOX, SHE SAID SHE DIDN'T 973 00:37:09,979 --> 00:37:11,880 WANT THIS KIND OF SECONDARY 974 00:37:11,880 --> 00:37:13,482 INFORMATION. SHOULD THEY 975 00:37:13,482 --> 00:37:15,751 DISCLOSE THE FINDING? SHOULD 976 00:37:15,751 --> 00:37:18,120 THE RESEARCHERS DISCLOSE THE 977 00:37:18,120 --> 00:37:20,489 FINDING EVEN THOUGH SHE SAID NO? 978 00:37:20,489 --> 00:37:22,992 THIS IS THE CLASSIC CASE IN THE 979 00:37:22,992 --> 00:37:24,259 RIGHT NOT TO KNOW. LET ME GIVE 980 00:37:24,259 --> 00:37:26,929 A LITTLE BIT OF SETUP AND THEN 981 00:37:26,929 --> 00:37:30,165 GIVE YOUR THOUGHTS ON THAT KIND 982 00:37:30,165 --> 00:37:32,568 OF SITUATION EARLY ON IN THE 983 00:37:32,568 --> 00:37:35,471 GENOMIC FINDINGS RESEARCH 984 00:37:35,471 --> 00:37:36,338 DEBATE, THIS WAS ACTUALLY AN 985 00:37:36,338 --> 00:37:38,640 AREA WHERE WE THOUGHT WE HAD 986 00:37:38,640 --> 00:37:40,409 CONSENSUS, WE SHOULD ONLY -- THE 987 00:37:40,409 --> 00:37:42,011 IDEA IS WE SHOULD ONLY BE 988 00:37:42,011 --> 00:37:42,978 RETURNING FINDINGS WHEN THEY'RE 989 00:37:42,978 --> 00:37:45,080 DESIRED BY THE PARTICIPANT, 990 00:37:45,080 --> 00:37:47,349 THERE'S AN ONLY, SUCH -- TO THE 991 00:37:47,349 --> 00:37:48,784 EXTENT THERE'S AN OBLIGATION 992 00:37:48,784 --> 00:37:50,019 ONLY TO OFFER INDIVIDUAL 993 00:37:50,019 --> 00:37:52,454 FINDINGS TO RESEARCH SUBJECTS 994 00:37:52,454 --> 00:37:53,956 AND LET THEM KNOW THAT THEY CAN 995 00:37:53,956 --> 00:37:55,958 SAY NO, SOLICIT THEIR PREFERENCE 996 00:37:55,958 --> 00:37:58,027 AND ONLY GIVE IT TO THEM WHEN 997 00:37:58,027 --> 00:37:59,995 THERE'S SORT OF OPT IN WHEN 998 00:37:59,995 --> 00:38:01,330 SOMEONE HAS POSITIVELY INDICATED 999 00:38:01,330 --> 00:38:04,333 THAT THEY WANT THESE KINDS OF 1000 00:38:04,333 --> 00:38:06,735 FINDINGS. THEN THE ACMG 1001 00:38:06,735 --> 00:38:11,040 PRODUCED THESE RECOMMENDATIONS 1002 00:38:11,040 --> 00:38:11,640 ALTHOUGH CONTROVERSIAL WHERE 1003 00:38:11,640 --> 00:38:13,375 THEY PRODUCED THIS LIST AND I 1004 00:38:13,375 --> 00:38:15,210 SHOULD STRESS THE LIST THAT I 1005 00:38:15,210 --> 00:38:16,211 REFERENCED EARLIER, THESE ARE 1006 00:38:16,211 --> 00:38:19,782 ALL THINGS THAT ARE ASSOCIATED 1007 00:38:19,782 --> 00:38:21,917 WITH SERIOUS DISEASE WHERE 1008 00:38:21,917 --> 00:38:22,918 THERE'S SOMETHING YOU CAN DO 1009 00:38:22,918 --> 00:38:25,287 ABOUT IT AND WHERE THE EVIDENCE 1010 00:38:25,287 --> 00:38:28,223 BASE IS RELATIVELY STRONG. SO 1011 00:38:28,223 --> 00:38:31,226 NOT HUNTINGTON'S DISEASE, NOT 1012 00:38:31,226 --> 00:38:31,794 ALZHEIMER'S WHERE THERE'S 1013 00:38:31,794 --> 00:38:35,030 NOTHING YOU CAN DO ABOUT IT. 1014 00:38:35,030 --> 00:38:36,732 BUT IN THESE RECOMMENDATIONS 1015 00:38:36,732 --> 00:38:38,700 THEY CONTROVERSIALLY ARGUED THAT 1016 00:38:38,700 --> 00:38:40,269 THIS SHOULD JUST BE THE DEFAULT. 1017 00:38:40,269 --> 00:38:42,504 THAT WE SHOULD BE RETURNING 1018 00:38:42,504 --> 00:38:44,339 THESE THINGS TO PEOPLE AND NOT 1019 00:38:44,339 --> 00:38:46,208 BE ASKING ABOUT THEIR 1020 00:38:46,208 --> 00:38:48,911 PREFERENCES. THE WORLD 1021 00:38:48,911 --> 00:38:50,312 EXPLODED. IT WAS LIKE EVERY 1022 00:38:50,312 --> 00:38:51,914 MEETING I WENT TO, EVERY 1023 00:38:51,914 --> 00:38:54,416 CONFERENCE I WENT TO FOR THREE 1024 00:38:54,416 --> 00:38:57,219 YEARS PEOPLE DEVOLVED INTO 1025 00:38:57,219 --> 00:38:59,421 SHOUTING MATCHES AND TEARS, IT 1026 00:38:59,421 --> 00:39:02,291 WAS VERY DRAMATIC. EVENTUALLY 1027 00:39:02,291 --> 00:39:04,159 THE ACMG WALKED BACK THEIR 1028 00:39:04,159 --> 00:39:06,728 RECOMMENDATIONS, SORT OF WALKED 1029 00:39:06,728 --> 00:39:08,831 BACK THEIR RECOMMENDATIONS AND 1030 00:39:08,831 --> 00:39:10,299 SO THERE'S THIS DEBATE OF THE 1031 00:39:10,299 --> 00:39:14,870 RIGHT NOT TO KNOW PROPONENTS 1032 00:39:14,870 --> 00:39:18,340 ARGUE IF YOU RETURN INFORMATION 1033 00:39:18,340 --> 00:39:19,675 WITHOUT PEOPLE'S BUY IN, WITHOUT 1034 00:39:19,675 --> 00:39:22,044 THEIR PERMISSION IT'S A 1035 00:39:22,044 --> 00:39:23,712 VIOLATION OF THEIR AUTONOMY AND 1036 00:39:23,712 --> 00:39:24,980 THEY WOULD SAY TO THAT FIRST 1037 00:39:24,980 --> 00:39:27,716 CASE THAT I STARTED WITH THAT 1038 00:39:27,716 --> 00:39:31,120 AUTONOMY CONCERNS SHOULD TAKE 1039 00:39:31,120 --> 00:39:33,088 PRIORITY OVER BENEFICENCE. THAT 1040 00:39:33,088 --> 00:39:36,391 PERSON SAID NO, HER COLON CANCER 1041 00:39:36,391 --> 00:39:38,160 RISK WE SHOULDN'T RETURN THAT TO 1042 00:39:38,160 --> 00:39:45,367 HER. I'M A SKEPTIC I THINK I 1043 00:39:45,367 --> 00:39:48,570 SAID THAT ALREADY. I CAN READ 1044 00:39:48,570 --> 00:39:55,711 MY WHOLE ARGUMENT IF YOU WANT. 1045 00:39:55,711 --> 00:39:57,012 THE EARLY LITERATURE IS MUCH, 1046 00:39:57,012 --> 00:39:58,380 MUCH LESS STRIDENT ABOUT THE 1047 00:39:58,380 --> 00:40:00,849 STRENGTH OF SOMEONE'S RIGHT NOT 1048 00:40:00,849 --> 00:40:03,585 TO KNOW. PEOPLE MAKE ARGUMENTS 1049 00:40:03,585 --> 00:40:08,957 ABOUT THE RIGHT NO -- THE 1050 00:40:08,957 --> 00:40:10,492 CONSTITUTIONALLY PROTECTED RIGHT 1051 00:40:10,492 --> 00:40:13,028 TO REFUSE TREATMENT. TO REFUSE 1052 00:40:13,028 --> 00:40:14,096 INFORMATION. I THINK THAT'S 1053 00:40:14,096 --> 00:40:15,564 WRONG FOR BOTH LEGAL AND 1054 00:40:15,564 --> 00:40:19,034 CONCEPTUAL REASONS. I GOT SOME 1055 00:40:19,034 --> 00:40:20,769 EMPIRICAL DATA THAT SHOW HOW 1056 00:40:20,769 --> 00:40:23,939 EASY IT IS TO SHIFT PEOPLE'S 1057 00:40:23,939 --> 00:40:25,240 PREFERENCES ABOUT THIS. 1058 00:40:25,240 --> 00:40:26,408 DEPENDING ON HOW YOU WORD THINGS 1059 00:40:26,408 --> 00:40:29,011 I THINK THERE ARE CONCEPTS LIKE 1060 00:40:29,011 --> 00:40:31,380 MORAL DISTRESS AND GENETIC 1061 00:40:31,380 --> 00:40:32,848 EXCEPTIONALISM THAT WEIGH IN 1062 00:40:32,848 --> 00:40:34,583 FAVOR OF BEING SKEPTICAL ABOUT 1063 00:40:34,583 --> 00:40:35,684 THE RIGHT NOT TO KNOW AND FOR A 1064 00:40:35,684 --> 00:40:38,320 VARIETY OF REASONS I THINK IF WE 1065 00:40:38,320 --> 00:40:40,422 REALLY ENSHRINED AS A POLICY 1066 00:40:40,422 --> 00:40:42,591 THIS STRONG CONCEPTION OF THE 1067 00:40:42,591 --> 00:40:44,860 RIGHT NOT TO KNOW WE DO MORE 1068 00:40:44,860 --> 00:40:48,230 HARM THAN GOOD THE MAIN ARGUMENT 1069 00:40:48,230 --> 00:40:48,997 I WOULD MAKE IS FROM SOME 1070 00:40:48,997 --> 00:40:50,933 DIDN'T -- AN EMPIRICAL PROJECT 1071 00:40:50,933 --> 00:40:52,434 THEY DID A FEW YEARS AGO. 1072 00:40:52,434 --> 00:40:54,102 WHERE WE ASKED PEOPLE WHO SAID 1073 00:40:54,102 --> 00:40:57,406 NO WHO CHECKED THE NO BOX THAT 1074 00:40:57,406 --> 00:40:58,440 WE WENT BACK TO THEM JUST TO 1075 00:40:58,440 --> 00:41:00,275 GIVE THEM A LITTLE MORE 1076 00:41:00,275 --> 00:41:02,477 INFORMATION AND SAID PLEASE MAKE 1077 00:41:02,477 --> 00:41:04,213 ANOTHER DECISION AND ABOUT HALF 1078 00:41:04,213 --> 00:41:06,315 OF THEM SAID NO A SECOND TIME. 1079 00:41:06,315 --> 00:41:08,217 WE CALLED THEM STRONG REFUSERS. 1080 00:41:08,217 --> 00:41:11,186 BUT ABOUT HALF OF THEM SAID YES. 1081 00:41:11,186 --> 00:41:13,388 AND WE CALLED THEM WEAK REFUSERS 1082 00:41:13,388 --> 00:41:15,724 SO THEY SAID NO INITIALLY AND 1083 00:41:15,724 --> 00:41:20,729 THEN SAID YES LATER. AND THE 1084 00:41:20,729 --> 00:41:22,097 BIG THING IS THAT THOSE STRONG 1085 00:41:22,097 --> 00:41:24,766 REFUSERS REMEMBERED WHAT THEY 1086 00:41:24,766 --> 00:41:26,134 SAID BEFORE. THEY REMEMBERED 1087 00:41:26,134 --> 00:41:27,736 THAT THEY SAID NO AND THEY SAID 1088 00:41:27,736 --> 00:41:31,740 NO A SECOND TIME BUT THE WEAK 1089 00:41:31,740 --> 00:41:36,211 REFUSERS, 75% OF THEM 1090 00:41:36,211 --> 00:41:39,514 MISREMEMBERED. THEY CLEARLY 1091 00:41:39,514 --> 00:41:41,250 MADE A MISTAKE AND THOUGHT THEY 1092 00:41:41,250 --> 00:41:43,085 HAD AFREEWAYED TO RECEIVE 1093 00:41:43,085 --> 00:41:44,653 SECONDARY FINDINGS. 1094 00:41:44,653 --> 00:41:46,054 IF YOU ENSHRINE THIS IDEA THAT 1095 00:41:46,054 --> 00:41:48,390 WE HAVE TO ASK EVERYONE FOR 1096 00:41:48,390 --> 00:41:49,558 THEIR PREFERENCES ABOUT WHETHER 1097 00:41:49,558 --> 00:41:51,159 OR NOT THEY WANT TO KNOW 1098 00:41:51,159 --> 00:41:51,927 SECONDARY FINDINGS, SOME OF THEM 1099 00:41:51,927 --> 00:41:54,930 ARE GOING TO MAKE A MISTAKE AND 1100 00:41:54,930 --> 00:41:57,566 THIS RAISES FOR ME AT LEAST A 1101 00:41:57,566 --> 00:42:00,335 NORMATIVE QUESTION OF WHETHER WE 1102 00:42:00,335 --> 00:42:01,503 SHOULD CONSTRUCT RIGHT NOT TO 1103 00:42:01,503 --> 00:42:04,940 KNOW POLICY TO ACCOMMODATE THIS 1104 00:42:04,940 --> 00:42:07,376 TINY GROUP OF PEOPLE WHO ARE 1105 00:42:07,376 --> 00:42:08,810 REFUSERS AND DON'T WANT TO KNOW 1106 00:42:08,810 --> 00:42:10,979 GIVEN THE SIGNIFICANT HARMS TO 1107 00:42:10,979 --> 00:42:11,713 PATIENTS OR PARTICIPANTS THAT 1108 00:42:11,713 --> 00:42:13,348 MIGHT MAKE A MISTAKE AND 1109 00:42:13,348 --> 00:42:16,718 MISREPORT THEIR PREFERENCES ON A 1110 00:42:16,718 --> 00:42:20,522 CONSENT FORM OR WHOSE INTERESTS 1111 00:42:20,522 --> 00:42:21,223 ARE MORE IMPORTANT THE WEAK OR 1112 00:42:21,223 --> 00:42:23,725 THE STRONG REFUSERS, THE PEOPLE 1113 00:42:23,725 --> 00:42:26,128 WHO REALLY DON'T WANT TO KNOW, 1114 00:42:26,128 --> 00:42:27,529 IMPOSING INFORMATION ON THEM 1115 00:42:27,529 --> 00:42:28,830 THAT DON'T WANT TO KNOW OR THOSE 1116 00:42:28,830 --> 00:42:30,265 WHO DO WANT TO KNOW THIS 1117 00:42:30,265 --> 00:42:31,800 POTENTIALLY LIFE SAVING 1118 00:42:31,800 --> 00:42:33,268 INFORMATION BUT JUST HAVE 1119 00:42:33,268 --> 00:42:35,704 CHECKED THE WRONG BOX. I'D 1120 00:42:35,704 --> 00:42:36,672 ARGUE THAT WE SHOULD PROTECT THE 1121 00:42:36,672 --> 00:42:39,174 WEAK REFUSERS BUT AGAIN 1122 00:42:39,174 --> 00:42:42,644 REASONABLE PEOPLE CAN DISAGREE 1123 00:42:42,644 --> 00:42:46,114 AND THIS IS, SORRY, I HAVE BEEN 1124 00:42:46,114 --> 00:42:47,382 PLAGUE AROUND WITH THIS IDEA WE 1125 00:42:47,382 --> 00:42:48,884 WROTE A COUPLE FELLOWS AND I 1126 00:42:48,884 --> 00:42:53,255 WROTE A LAW REVIEW ARTICLE A 1127 00:42:53,255 --> 00:42:58,560 COUPLE YEARS AGO ABOUT CHOICE 1128 00:42:58,560 --> 00:43:00,429 MASKING NUDGES. PEOPLE CAN HAVE 1129 00:43:00,429 --> 00:43:01,730 A CHOICE BUT WE CAN HIDE THAT 1130 00:43:01,730 --> 00:43:03,065 CHOICE FROM THEM. SO THEY'D 1131 00:43:03,065 --> 00:43:06,935 HAVE TO RAISE THEIR HAND. THE 1132 00:43:06,935 --> 00:43:08,470 STRONG REFUSERS WOULD HAVE TO 1133 00:43:08,470 --> 00:43:09,938 SAY YOU KNOW, I DON'T WANT TO 1134 00:43:09,938 --> 00:43:10,972 KNOW THIS INFORMATION. THERE'D 1135 00:43:10,972 --> 00:43:12,140 BE NO QUESTION, THERE'D BE NO 1136 00:43:12,140 --> 00:43:14,543 INFORMATION IN THE CONSENT FORM 1137 00:43:14,543 --> 00:43:15,777 EXCEPT FOR INFORMATION ABOUT HOW 1138 00:43:15,777 --> 00:43:18,113 TO CONTACT PEOPLE WITH 1139 00:43:18,113 --> 00:43:19,114 QUESTIONS. THERE'D BE NO 1140 00:43:19,114 --> 00:43:22,517 PROMPTING. I AM ATTRACTED TO 1141 00:43:22,517 --> 00:43:24,886 THIS IDEA I ACKNOWLEDGE IN THE 1142 00:43:24,886 --> 00:43:26,988 RESEARCH ETHICS AND BIOETHICS 1143 00:43:26,988 --> 00:43:28,757 COMMUNITY THE IDEA OF CHOICE 1144 00:43:28,757 --> 00:43:31,560 MASKING NUDGES COULD BE 1145 00:43:31,560 --> 00:43:32,994 CONTROVERSIAL DEPENDING ON THE 1146 00:43:32,994 --> 00:43:35,130 CONTEXT BUT I THINK IT'S AN 1147 00:43:35,130 --> 00:43:37,399 INTERESTING CONCEPT TO PLAY 1148 00:43:37,399 --> 00:43:38,900 WITH. ALL RIGHT. I AM NEARLY 1149 00:43:38,900 --> 00:43:41,970 OUT OF TIME. LET ME JUST GIVE 1150 00:43:41,970 --> 00:43:46,808 YOU MY BOTTOM LINE, WELL, LET ME 1151 00:43:46,808 --> 00:43:49,678 GIVE YOU MY E-MAIL AND THEN 1152 00:43:49,678 --> 00:43:54,683 WE'LL, SORRY, I PUSHED THE WRONG 1153 00:43:54,683 --> 00:43:57,919 BUTTON. I THINK THAT WE 1154 00:43:57,919 --> 00:44:01,156 SHOULDN'T EXPLICITLY SOLICIT 1155 00:44:01,156 --> 00:44:02,591 PREFERENCES ABOUT CONSENT ABOUT 1156 00:44:02,591 --> 00:44:05,060 THE RIGHT NOT TO KNOW IF PEOPLE 1157 00:44:05,060 --> 00:44:07,229 RAISE THEIR HAND AND SAY I DON'T 1158 00:44:07,229 --> 00:44:08,397 WANT TO KNOW WE CAN HONOR THAT 1159 00:44:08,397 --> 00:44:09,998 AND THAT'S THE EXTENT OF WHAT WE 1160 00:44:09,998 --> 00:44:11,433 NEED TO SOLICIT WITH THE 1161 00:44:11,433 --> 00:44:12,401 EXCEPTION THAT WHEN THERE ARE 1162 00:44:12,401 --> 00:44:14,436 PEOPLE FOR WHOM THE GENETIC 1163 00:44:14,436 --> 00:44:17,038 FINDINGS MIGHT NOT BE CLINICALLY 1164 00:44:17,038 --> 00:44:19,574 ACTIONABLE, IT'S OKAY? THOSE 1165 00:44:19,574 --> 00:44:20,675 CASES TO SOLICIT PREFERENCES BUT 1166 00:44:20,675 --> 00:44:24,246 THAT'S AN EXCEPTION I THINK TO 1167 00:44:24,246 --> 00:44:25,814 MY GENERAL RULE. SO I THINK I'M 1168 00:44:25,814 --> 00:44:27,716 RIGHT ON TIME I THINK WE HAVE 1169 00:44:27,716 --> 00:44:28,750 TEN MINUTES AND I WOULD LOVE ALL 1170 00:44:28,750 --> 00:44:31,920 OF YOUR QUESTIONS. THANK YOU. 1171 00:44:31,920 --> 00:44:33,054 >> AUDIENCE: (APPLAUSE). 1172 00:44:33,054 --> 00:44:35,724 >> THANK YOU, BEN AND AS USUAL, 1173 00:44:35,724 --> 00:44:37,959 FOLKS CAN GO TO THE MICS AND 1174 00:44:37,959 --> 00:44:41,863 THOSE OF YOU WHO ARE WATCHING 1175 00:44:41,863 --> 00:44:42,697 ONLINE, FEEL FREE TO POST 1176 00:44:42,697 --> 00:44:44,399 QUESTIONS IN THE DISCUSSION 1177 00:44:44,399 --> 00:44:47,068 BOARD, LOOKS LIKE DANIEL IS 1178 00:44:47,068 --> 00:44:57,546 GETTING UP FOR A QUESTION. 1179 00:44:59,648 --> 00:45:01,917 >> HEY, BEN MY QUESTION IS THE 1180 00:45:01,917 --> 00:45:03,752 DUTY TO RES CUES. MAYBE IT'S 1181 00:45:03,752 --> 00:45:07,389 GONE STRONGER AS GENOMICS HAS 1182 00:45:07,389 --> 00:45:09,357 BECOME LESS DANGEROUS OR CHEAPER 1183 00:45:09,357 --> 00:45:13,094 OR MORE UBIQUITOUS THE BAR FOR 1184 00:45:13,094 --> 00:45:16,331 WHAT TO -- WHAT SECONDARY 1185 00:45:16,331 --> 00:45:19,334 RESULTS TO RETURN HAS GOTTEN 1186 00:45:19,334 --> 00:45:21,536 LOWER AS IT'S BECOME EASIER TO, 1187 00:45:21,536 --> 00:45:23,538 LIKE, DO ALL THIS GENOMICS. SO 1188 00:45:23,538 --> 00:45:29,277 I'M WONDERING, LIKE, IF SORT OF 1189 00:45:29,277 --> 00:45:31,713 TRENDS CONTINUE AND GENOMICS 1190 00:45:31,713 --> 00:45:33,882 BECOMES SO CHEAP AND UBIQUITOUS 1191 00:45:33,882 --> 00:45:35,684 THAT THE DUTY OF RESCUE BECOMES 1192 00:45:35,684 --> 00:45:39,588 SO STRONG THAT WE HAVE A DUTY TO 1193 00:45:39,588 --> 00:45:42,023 RETURN RESULTS THAT ARE LESS 1194 00:45:42,023 --> 00:45:45,694 CLINICALLY RELEVANT OR, LIKE THE 1195 00:45:45,694 --> 00:45:49,097 THREAT IS LESS DANGEROUS LIKE, 1196 00:45:49,097 --> 00:45:50,699 DISEASES THAT AREN'T QUITE AS 1197 00:45:50,699 --> 00:45:53,235 HARMFUL EVEN TO THE PINT THAT 1198 00:45:53,235 --> 00:45:55,737 FOR RESULTS THAT ARE NOT 1199 00:45:55,737 --> 00:45:58,273 CLINICALLY RELEVANT AT ALL FF 1200 00:45:58,273 --> 00:46:00,942 FUTURE BALDNESS OR RELATION TO 1201 00:46:00,942 --> 00:46:02,077 PARENTS, THAT SORT OF THING. 1202 00:46:02,077 --> 00:46:04,546 >> RIGHT, SO THAT'S A GOOD 1203 00:46:04,546 --> 00:46:06,848 QUESTION. AND I HAVE WRITTEN A 1204 00:46:06,848 --> 00:46:09,150 PAPER ABOUT THIS GENERALLY SO 1205 00:46:09,150 --> 00:46:11,720 ONE OF THE TRICKY THINGS IS THAT 1206 00:46:11,720 --> 00:46:13,955 WE'RE STILL SORT OF IN THE EARLY 1207 00:46:13,955 --> 00:46:17,926 PHASES OF THE GENOMIC ERA. AND 1208 00:46:17,926 --> 00:46:20,595 IT HASN'T FULLY BEEN INTEGRATED 1209 00:46:20,595 --> 00:46:21,596 INTO CLINICAL CARE YET. SO 1210 00:46:21,596 --> 00:46:24,766 EARLY IN THE GENOMIC ERA IT WAS 1211 00:46:24,766 --> 00:46:27,002 REALLY HARD TO GENERATE THESE 1212 00:46:27,002 --> 00:46:29,070 FINDINGS IT WAS HARD TO RETURN 1213 00:46:29,070 --> 00:46:31,640 THEM AND SO THE IMPOSING THE 1214 00:46:31,640 --> 00:46:34,009 DUTY TO RESCUE IN THOSE CASES 1215 00:46:34,009 --> 00:46:35,877 WAS A PRETTY BIG ASK WE'RE NOW 1216 00:46:35,877 --> 00:46:37,379 IN THIS MOMENT WHERE IT'S 1217 00:46:37,379 --> 00:46:39,648 GETTING EASIER AND EASIER. THE 1218 00:46:39,648 --> 00:46:41,883 VALUE OF THESE FINDINGS IS 1219 00:46:41,883 --> 00:46:43,718 INCREASING EVERYDAY. BUT YET 1220 00:46:43,718 --> 00:46:46,288 WE'RE NOT STILL FULLY 1221 00:46:46,288 --> 00:46:47,722 INCORPORATED INTO CLINICAL CARE 1222 00:46:47,722 --> 00:46:52,193 AND SO IN THIS MOMENT, I THINK 1223 00:46:52,193 --> 00:46:53,628 THE DUTY TO RESCUE IS GOING TO 1224 00:46:53,628 --> 00:46:54,729 BE HIGHEST BECAUSE RESEARCHERS 1225 00:46:54,729 --> 00:46:56,631 HAVE MORE OF A UNIQUE 1226 00:46:56,631 --> 00:46:59,067 OPPORTUNITY. PEOPLE AREN'T 1227 00:46:59,067 --> 00:46:59,701 GETTING THIS TESTING IN CLINICAL 1228 00:46:59,701 --> 00:47:01,202 CARE. BUT THEY SOMETIMES ARE 1229 00:47:01,202 --> 00:47:03,004 GETTING IT IN RESEARCH AND SO 1230 00:47:03,004 --> 00:47:03,972 THERE'S MORE OF A UNIQUE 1231 00:47:03,972 --> 00:47:05,907 OPPORTUNITY TO HELP PEOPLE. 1232 00:47:05,907 --> 00:47:07,709 IMAGINE A WORLD TEN, TWENTY 1233 00:47:07,709 --> 00:47:09,444 YEARS FROM NOW WHERE EVERYONE 1234 00:47:09,444 --> 00:47:10,879 GETS SEQUENCED AT BIRTH AND YOUR 1235 00:47:10,879 --> 00:47:13,715 SEQUENCE DATA IS JUST 1236 00:47:13,715 --> 00:47:15,216 INCORPORATED INTO YOUR MEDICAL 1237 00:47:15,216 --> 00:47:17,118 RECORD AND CONSTANTLY ANALYZED 1238 00:47:17,118 --> 00:47:19,154 BY YOUR DOCTORS OR AI OR 1239 00:47:19,154 --> 00:47:21,089 WHATEVER. I THINK IN THAT 1240 00:47:21,089 --> 00:47:22,023 MOMENT THE DUTY TO RESCUE IS 1241 00:47:22,023 --> 00:47:24,025 GOING TO GO AWAY BECAUSE 1242 00:47:24,025 --> 00:47:25,527 RESEARCHERS WON'T BE ANY SORT OF 1243 00:47:25,527 --> 00:47:28,997 UNIQUE POSITION TO HELP PEOPLE. 1244 00:47:28,997 --> 00:47:31,600 SO I THINK NOW OR SOON WE'RE 1245 00:47:31,600 --> 00:47:35,136 GOING TO BE IN THE HACKS 1246 00:47:35,136 --> 00:47:36,404 MAXIMAL DUTY TO RESCUE MOMENT. 1247 00:47:36,404 --> 00:47:38,139 BUT IT WILL HAVE A WAY AS IT 1248 00:47:38,139 --> 00:47:41,009 GETS MORE AND MORE INCORPORATED 1249 00:47:41,009 --> 00:47:41,443 INTO CLINICAL CARE. 1250 00:47:41,443 --> 00:47:46,414 >> AUDIENCE: THANKS. 1251 00:47:46,414 --> 00:47:47,515 >> ALEX. 1252 00:47:47,515 --> 00:47:48,650 >> AUDIENCE: HI, BEN, CAN YOU 1253 00:47:48,650 --> 00:47:53,121 ALL HEAR ME? OKAY. GREAT. SO 1254 00:47:53,121 --> 00:47:58,393 MY QUESTION IS, ONCE MAYBE 1255 00:47:58,393 --> 00:47:59,394 TECHNOLOGY GETS MORE ADVANCED 1256 00:47:59,394 --> 00:48:01,796 AND IT'S NOT AS MUCH OF A BURDEN 1257 00:48:01,796 --> 00:48:03,064 TO REPORT SECONDARY FINDINGS, 1258 00:48:03,064 --> 00:48:06,034 BECAUSE THAT SEEMS LIKE THE MAIN 1259 00:48:06,034 --> 00:48:07,502 IMPEDIMENT IS IT'S A HUGE BURDEN 1260 00:48:07,502 --> 00:48:10,672 TO TRACK THOSE PEOPLE DOWN BUT 1261 00:48:10,672 --> 00:48:11,373 IF THAT BECAME ALMOST SEAMLESS 1262 00:48:11,373 --> 00:48:13,608 IN THE FUTURE DO YOU THINK THERE 1263 00:48:13,608 --> 00:48:15,677 WOULD STILL BE A GOOD ARGUMENT 1264 00:48:15,677 --> 00:48:18,146 FOR SECONDARY FINDINGS NOT BEING 1265 00:48:18,146 --> 00:48:22,283 RETURNED IF IT, SAY IT WERE EASY 1266 00:48:22,283 --> 00:48:22,751 TO DO IT? 1267 00:48:22,751 --> 00:48:25,120 >> BEN: I THINK PEOPLE ADOPT OUR 1268 00:48:25,120 --> 00:48:27,288 ARGUMENT THAT THERE SHOULD BE AN 1269 00:48:27,288 --> 00:48:28,223 INSTITUTIONAL OBLIGATION I DON'T 1270 00:48:28,223 --> 00:48:29,791 THINK IT'S GOING TO BE THAT HARD 1271 00:48:29,791 --> 00:48:31,493 TO SET UP THESE PROGRAMS AND 1272 00:48:31,493 --> 00:48:32,827 JULIE'S GOING TO TALK ABOUT THIS 1273 00:48:32,827 --> 00:48:35,096 IN A MINUTE ABOUT THE NIH 1274 00:48:35,096 --> 00:48:36,765 PROGRAM. SO I THINK YOUR 1275 00:48:36,765 --> 00:48:40,368 INSTINCT IS RIGHT. AS IT GETS 1276 00:48:40,368 --> 00:48:42,804 EASIER AND EASIER TO RETURN 1277 00:48:42,804 --> 00:48:43,471 FINDINGS AND PARTICULARLY AS WE 1278 00:48:43,471 --> 00:48:45,540 GET BETTER AND BETTER AT SETTING 1279 00:48:45,540 --> 00:48:47,308 UP RESOURCES ON THE 1280 00:48:47,308 --> 00:48:48,677 INSTITUTIONAL LEVEL THAT ARE 1281 00:48:48,677 --> 00:48:49,911 REALLY GOOD AT THIS, THAT THE 1282 00:48:49,911 --> 00:48:51,112 ARGUMENTS THAT PEOPLE WANT TO 1283 00:48:51,112 --> 00:48:53,048 MAKE ABOUT HOW THIS IS HARD, 1284 00:48:53,048 --> 00:48:54,983 THIS IS TOO MUCH BURDEN, THIS 1285 00:48:54,983 --> 00:48:56,418 WILL SLOW MY RESEARCH DOWN THOSE 1286 00:48:56,418 --> 00:48:59,287 ARE GOING TO BE INCREASINGLY 1287 00:48:59,287 --> 00:49:02,724 UNTENABLE AND I'D ARGUE THEY 1288 00:49:02,724 --> 00:49:04,926 ALREADY SORT OF ARE. EXCEPT IN 1289 00:49:04,926 --> 00:49:05,860 PRETTY RARE CASES SO I THINK 1290 00:49:05,860 --> 00:49:07,362 YOU'RE RIGHT. WE SHOULD BE 1291 00:49:07,362 --> 00:49:09,564 PRETTY SKEPTICAL OF THOSE KINDS 1292 00:49:09,564 --> 00:49:11,132 OF ARGUMENTS. 1293 00:49:11,132 --> 00:49:12,600 >> AUDIENCE: M-HM. THANKS. 1294 00:49:12,600 --> 00:49:15,437 >> GO AHEAD, JULIE. 1295 00:49:15,437 --> 00:49:17,639 >> AUDIENCE: SO I'M GOING TO 1296 00:49:17,639 --> 00:49:19,240 REFERENCE THE FIRST QUESTION, I 1297 00:49:19,240 --> 00:49:20,408 REFLECT ON THIS A LOT BUT 1298 00:49:20,408 --> 00:49:22,077 HEARING HOW YOU LAY OUT HOW THE 1299 00:49:22,077 --> 00:49:24,279 THINKING HAS EVOLVED 2010 IS 1300 00:49:24,279 --> 00:49:26,548 KIND OF A BENCHMARK FOR ME TOO 1301 00:49:26,548 --> 00:49:27,482 I'M JUST CURIOUS ABOUT YOUR TAKE 1302 00:49:27,482 --> 00:49:31,720 ON THE EXTENT TO WHICH KIND OF 1303 00:49:31,720 --> 00:49:33,855 POSITIONS HAVE EVOLVED ON THIS 1304 00:49:33,855 --> 00:49:34,989 ISSUE AND HOW MUCH OF THAT HAS 1305 00:49:34,989 --> 00:49:37,625 BEEN INFORMED BY KIND OF 1306 00:49:37,625 --> 00:49:38,460 EMPIRICAL RESEARCH AND HOW MUCH 1307 00:49:38,460 --> 00:49:41,162 DO YOU THINK JUST THE FACT THAT 1308 00:49:41,162 --> 00:49:43,698 THE TECHNOLOGY HAS EVOLVED AT 1309 00:49:43,698 --> 00:49:46,401 JUST SUCH AN ENORMOUSLY RAPID 1310 00:49:46,401 --> 00:49:47,736 PACE CONTRIBUTES TO THAT. DO 1311 00:49:47,736 --> 00:49:49,804 YOU KIND OF UNDERSTAND WHAT I'M 1312 00:49:49,804 --> 00:49:50,171 SAYING? 1313 00:49:50,171 --> 00:49:52,674 >> BEN: I THINK IT'S BOTH. IT'S 1314 00:49:52,674 --> 00:49:55,677 CERTAINLY BOTH. BUT I THINK THE 1315 00:49:55,677 --> 00:49:57,512 BIGGEST BARRIER EARLY ON, AT 1316 00:49:57,512 --> 00:49:59,714 LEAST FROM THE CONVERSATIONS I 1317 00:49:59,714 --> 00:50:03,218 WAS SEEING, WAS THIS CONCERN 1318 00:50:03,218 --> 00:50:05,153 ABOUT THE PSYCHOSOCIAL HARMS, 1319 00:50:05,153 --> 00:50:07,756 THE IDEA THAT GENETIC -- 1320 00:50:07,756 --> 00:50:10,692 RETURNING UNPLEASANT UNFORTUNATE 1321 00:50:10,692 --> 00:50:12,694 GENETIC INFORMATION TO PEOPLE 1322 00:50:12,694 --> 00:50:14,896 WOULD CREATE TERRIBLE ANXIETY OR 1323 00:50:14,896 --> 00:50:16,898 DEPRESSION OR THEY'D BE 1324 00:50:16,898 --> 00:50:18,733 STIGMATIZED OR DISCRIMINATED 1325 00:50:18,733 --> 00:50:20,769 AGAINST ECONOMICALLY OR IN THEIR 1326 00:50:20,769 --> 00:50:24,372 JOB OR HEALTH CARE, INSURANCE, 1327 00:50:24,372 --> 00:50:27,041 AND I THINK THAT THOSE WORRIES 1328 00:50:27,041 --> 00:50:29,277 WERE VERY UNDERSTANDABLE BUT 1329 00:50:29,277 --> 00:50:31,346 THEY WERE THEORETICAL, THEY WERE 1330 00:50:31,346 --> 00:50:32,247 SPECULATIVE AND WE KNEW HAVE 1331 00:50:32,247 --> 00:50:35,650 FIFTEEN MORE YEARS OF EXPERIENCE 1332 00:50:35,650 --> 00:50:38,052 WHERE PEOPLE HAVE BEEN ACTIVELY 1333 00:50:38,052 --> 00:50:39,721 STUDYING THOSE. 1334 00:50:39,721 --> 00:50:42,624 AND WE JUST HAVEN'T FOUND 1335 00:50:42,624 --> 00:50:45,560 ACCEPTANCE EXCEPT IN DISCREET 1336 00:50:45,560 --> 00:50:49,264 CASES WHERE THOSE KINDS OF 1337 00:50:49,264 --> 00:50:49,964 PSYCHOSOCIAL AND ECONOMIC HARMS 1338 00:50:49,964 --> 00:50:51,866 ARE REALLY MANIFESTING. ONCE 1339 00:50:51,866 --> 00:50:54,169 THAT WENT AWAY AND AS IT GOT 1340 00:50:54,169 --> 00:50:56,237 EASIER AND TECHNOLOGY IMPROVED 1341 00:50:56,237 --> 00:50:58,139 AND THE VALUE OF THE FINDINGS 1342 00:50:58,139 --> 00:51:00,408 INCREASED AS WE KNEW MORE AND 1343 00:51:00,408 --> 00:51:04,179 MORE, BUT AS THAT COST BENEFIT 1344 00:51:04,179 --> 00:51:06,815 RATIO SHIFTED, I THINK IT JUST 1345 00:51:06,815 --> 00:51:07,715 BECAME MORE AND MORE SORT OF 1346 00:51:07,715 --> 00:51:10,852 LIKE A NO-BRAINER. WE SHOULD BE 1347 00:51:10,852 --> 00:51:12,787 RETURNING THESE THINGS TO 1348 00:51:12,787 --> 00:51:13,822 PEOPLE. THERE'S NOT THAT MUCH 1349 00:51:13,822 --> 00:51:20,829 RISK OF HARM. IT DO CAN DO A 1350 00:51:20,829 --> 00:51:22,931 LOT OF GOOD AND IT GOETZ EASIER 1351 00:51:22,931 --> 00:51:23,798 AND EASIER. 1352 00:51:23,798 --> 00:51:25,667 MY PAIN POINT IS THIS IS AN 1353 00:51:25,667 --> 00:51:26,501 IMPORTANT THING TO DO AND WE 1354 00:51:26,501 --> 00:51:28,570 SHOULD DO IT. BUT IT'S OKAY TO 1355 00:51:28,570 --> 00:51:30,238 DRAW CONTOURS AROUND. IT'S OKAY 1356 00:51:30,238 --> 00:51:33,208 TO LIMIT IT TO SOME DEGREE. 1357 00:51:33,208 --> 00:51:35,710 THOSE LIMITS MIGHT CHANGE AS THE 1358 00:51:35,710 --> 00:51:37,912 SITUATION AND TECHNOLOGY DEVOLVE 1359 00:51:37,912 --> 00:51:39,581 BUT IT'S OKAY TO SAY THIS IS 1360 00:51:39,581 --> 00:51:40,615 RESEARCH, IT'S NOT CLINICAL CARE 1361 00:51:40,615 --> 00:51:42,450 WE DON'T HAVE TO PROVIDE THE 1362 00:51:42,450 --> 00:51:43,585 SAME THINGS BUT WE SHOULD REALLY 1363 00:51:43,585 --> 00:51:46,054 BE TRAYING TO HELP PEOPLE WITH 1364 00:51:46,054 --> 00:51:48,590 THESE POTENTIALLY LIFE SAVING 1365 00:51:48,590 --> 00:51:49,624 FINDINGS WHEN WE CAN. 1366 00:51:49,624 --> 00:51:51,559 >> WE HAVE TWO QUESTIONS OUT 1367 00:51:51,559 --> 00:51:54,195 FROM OUT IN THE WORLD. ONE FROM 1368 00:51:54,195 --> 00:51:54,762 ANITA. 1369 00:51:54,762 --> 00:51:55,830 THANK YOU FOR THIS INTERESTING 1370 00:51:55,830 --> 00:51:57,332 DISCUSSION, IN TERMS OF THE 1371 00:51:57,332 --> 00:52:00,702 RIGHT NOT TO KNOW, AND IF 1372 00:52:00,702 --> 00:52:03,004 AUTONOMY IS GREATER THAN 1373 00:52:03,004 --> 00:52:04,305 BENEFICENCE HOW DOES THIS FIT 1374 00:52:04,305 --> 00:52:07,508 WITH THE CLINICIAN'S HIPPOCRATIC 1375 00:52:07,508 --> 00:52:10,511 OATH TO FIRST DO NO HARM I CAN'T 1376 00:52:10,511 --> 00:52:11,713 IMAGINE KNOWING A PERSON'S LIFE 1377 00:52:11,713 --> 00:52:13,047 COULD BE SAVED IF THEY HAD A 1378 00:52:13,047 --> 00:52:14,449 PARTICULAR TREATMENT AND NOT 1379 00:52:14,449 --> 00:52:17,185 TELLING THEM ABOUT IT TO MAKE 1380 00:52:17,185 --> 00:52:18,753 THE DECISION. 1381 00:52:18,753 --> 00:52:20,121 >> BEN. IT'S A GREAT QUESTION 1382 00:52:20,121 --> 00:52:22,590 AND INVOKING THE IDEA OF MORAL 1383 00:52:22,590 --> 00:52:22,857 DISTRESS. 1384 00:52:22,857 --> 00:52:24,392 THE IDEA THAT YOU KNOW THE RIGHT 1385 00:52:24,392 --> 00:52:26,294 THING AS A PROVIDER, YOU KNOW 1386 00:52:26,294 --> 00:52:30,098 THE RIGHT THING TO DO. BUT FOR 1387 00:52:30,098 --> 00:52:40,642 VARIOUS REASONS ARE CONSTRAINED. 1388 00:52:42,610 --> 00:52:44,279 YOU KNOW YOU CAN SAVE A PERSON'S 1389 00:52:44,279 --> 00:52:46,147 LIFE BUT BECAUSE THEY CHECKED A 1390 00:52:46,147 --> 00:52:47,682 BOX YOU'RE NOT ALLOWED TO AND 1391 00:52:47,682 --> 00:52:49,550 THAT'S ONE OF THE REASONS WHY I 1392 00:52:49,550 --> 00:52:51,619 THINK WE SHOULDN'T ASK THEM TO 1393 00:52:51,619 --> 00:52:53,221 CHECK BOX ON SOMETHING THIS 1394 00:52:53,221 --> 00:52:53,821 IMPORTANT BECAUSE THERE'S SO 1395 00:52:53,821 --> 00:52:55,757 MUCH LITERATURE ABOUT HOW PEOPLE 1396 00:52:55,757 --> 00:52:57,926 DON'T UNDERSTAND CONSENT FORMS 1397 00:52:57,926 --> 00:52:59,360 AND DON'T READ THEM AND MAKE 1398 00:52:59,360 --> 00:53:04,699 MISTAKES AND I THINK THAT 1399 00:53:04,699 --> 00:53:05,733 WORRYING ABOUT THAT PERSON WHOSE 1400 00:53:05,733 --> 00:53:07,769 LIFE CAN BE SAVED IS MORE 1401 00:53:07,769 --> 00:53:09,370 IMPORTANT THAN WORRYING ABOUT 1402 00:53:09,370 --> 00:53:10,638 THE PERSON WHO DOESN'T WANT TO 1403 00:53:10,638 --> 00:53:12,707 KNOW THIS INFORMATION AND MAYBE 1404 00:53:12,707 --> 00:53:13,775 HAS GOOD REASONS TO. 1405 00:53:13,775 --> 00:53:15,276 BUT PARTICULARLY AS I'VE ARGUED 1406 00:53:15,276 --> 00:53:17,612 IF THEY CAN RAISE THEIR HAND AND 1407 00:53:17,612 --> 00:53:18,279 SAY I DON'T WANT TO KNOW LET'S 1408 00:53:18,279 --> 00:53:20,548 PUT THE OBLIGATION ON THEM TO DO 1409 00:53:20,548 --> 00:53:22,450 THAT AND PROTECT THE PERSON WHO 1410 00:53:22,450 --> 00:53:23,818 MIGHT CHECK THE WRONG BOX AND 1411 00:53:23,818 --> 00:53:27,355 THE PROVIDER WHO MIGHT FEEL 1412 00:53:27,355 --> 00:53:28,957 REALLY TROUBLED ABOUT NOT SAVING 1413 00:53:28,957 --> 00:53:30,258 THAT PERSON'S LIFE. 1414 00:53:30,258 --> 00:53:33,695 >> EXACTLY. GREAT, WE HAVE ONE 1415 00:53:33,695 --> 00:53:36,331 MORE QUESTION. IT'LL BE QUICK 1416 00:53:36,331 --> 00:53:38,132 IF POSSIBLE ANSWER. IF, SO, 1417 00:53:38,132 --> 00:53:40,368 THIS IS FROM KIM. THANK YOU FOR 1418 00:53:40,368 --> 00:53:42,136 BRINGING THE CLARITY TO A 1419 00:53:42,136 --> 00:53:44,939 COMPLEX TOPIC. IF RESEARCHERS 1420 00:53:44,939 --> 00:53:47,108 ORG THAT RESULTS SHOULD NOT BE 1421 00:53:47,108 --> 00:53:49,277 RETURNED, IF THERE IS NO 1422 00:53:49,277 --> 00:53:51,212 ACTIONABLE OPTION, THEN ONE CAN 1423 00:53:51,212 --> 00:53:52,547 ARGUE THAT RESEARCH SHOULDN'T BE 1424 00:53:52,547 --> 00:53:55,149 DONE IN THAT GEOGRAPHIC LOCATION 1425 00:53:55,149 --> 00:53:57,986 AT ALL, HOW DO WE THINK ABOUT 1426 00:53:57,986 --> 00:53:59,220 THAT VIEW? 1427 00:53:59,220 --> 00:54:01,656 >> BEN: SO THAT'S INTERESTING. 1428 00:54:01,656 --> 00:54:04,826 AND PEOPLE -- TO BE CLEAR I'M 1429 00:54:04,826 --> 00:54:06,461 NOT ARGUING YOU SHOULDN'T RETURN 1430 00:54:06,461 --> 00:54:09,731 THAT BUT THE PEOPLE THAT MAKE 1431 00:54:09,731 --> 00:54:11,199 THAT KIND OF ARGUMENT, I MEAN, 1432 00:54:11,199 --> 00:54:12,166 THERE ARE GOOD REASONS WHY WE 1433 00:54:12,166 --> 00:54:13,868 HAVE TO DO RESEARCH IN A WIDE 1434 00:54:13,868 --> 00:54:17,205 VARIETY OF REGIONS. AND I WOULD 1435 00:54:17,205 --> 00:54:19,741 HATE IT, IF THE RESEARCH IS 1436 00:54:19,741 --> 00:54:22,143 DESIGNED TO PRODUCE 1437 00:54:22,143 --> 00:54:22,744 GENERALIZABLE KNOWLEDGE THAT 1438 00:54:22,744 --> 00:54:24,212 COULD REALLY HELP THAT REGION I 1439 00:54:24,212 --> 00:54:25,513 WOULD HATE TO SHUT DOWN RESEARCH 1440 00:54:25,513 --> 00:54:29,050 JUST BECAUSE OF THE SECONDARY 1441 00:54:29,050 --> 00:54:30,585 FINDINGS ARGUMENT BUT I THINK 1442 00:54:30,585 --> 00:54:33,154 THIS PERSON IS HIGHLIGHTING A 1443 00:54:33,154 --> 00:54:35,757 TENSION THAT MAKING AN ARGUMENT 1444 00:54:35,757 --> 00:54:36,391 THAT REALLY SUGGESTS WE 1445 00:54:36,391 --> 00:54:38,693 SHOULDN'T BE RETURNING THINGS 1446 00:54:38,693 --> 00:54:41,896 JUST BECAUSE IT'S NOT ACTIONABLE 1447 00:54:41,896 --> 00:54:44,332 IN THAT COMMUNITY, ON THAT DAY, 1448 00:54:44,332 --> 00:54:45,867 THINGS CHANGE, THINGS CAN 1449 00:54:45,867 --> 00:54:48,369 EVOLVE, PEOPLE HAVE MORE 1450 00:54:48,369 --> 00:54:52,607 RESOURCES AND MORE, IT'S FAIRLY 1451 00:54:52,607 --> 00:54:57,078 PATERNALISTIC AND MYOPIC TO 1452 00:54:57,078 --> 00:54:58,279 ASSUME THAT JUST BECAUSE THERE'S 1453 00:54:58,279 --> 00:55:00,982 NOT THE FACILITIES TO HELP 1454 00:55:00,982 --> 00:55:02,083 SOMEONE TREAT THAT CONDITION NOW 1455 00:55:02,083 --> 00:55:06,821 THAT THEY COULDN'T ACCESS IT 1456 00:55:06,821 --> 00:55:08,523 SOON OR IN THE MEDIUM OR 1457 00:55:08,523 --> 00:55:10,925 LONG-TERM SO I AGREE THAT IT'S 1458 00:55:10,925 --> 00:55:12,260 NOT A VERY STRONG ARGUMENT TO 1459 00:55:12,260 --> 00:55:14,162 MAKE TO SAY THAT WE SHOULDN'T BE 1460 00:55:14,162 --> 00:55:15,763 RETURNING JUST BECAUSE IT'S NOT 1461 00:55:15,763 --> 00:55:16,464 ACTIONABLE. 1462 00:55:16,464 --> 00:55:19,300 >> GREAT. THANK YOU, BEN. 1463 00:55:19,300 --> 00:55:20,968 >> BEN: THANK YOU SO MUCH. 1464 00:55:20,968 --> 00:55:23,137 >> RIGHT ON TIME, THANK YOU VERY 1465 00:55:23,137 --> 00:55:27,108 MUCH. SO, NEXT, IT'S MY GREAT 1466 00:55:27,108 --> 00:55:29,143 PLEASURE TO INTRODUCE DR. JULIE 1467 00:55:29,143 --> 00:55:30,778 SAP AND AS BEN SAID SHE'S GOING 1468 00:55:30,778 --> 00:55:33,014 TO REALLY TALK TO US A BIT ABOUT 1469 00:55:33,014 --> 00:55:35,183 THE PRACTICAL ASPECTS OF ALL OF 1470 00:55:35,183 --> 00:55:37,618 THIS. SHE IS A GENETIC 1471 00:55:37,618 --> 00:55:41,022 COUNSELOR AND AT THE CENTER FOR 1472 00:55:41,022 --> 00:55:43,591 PRECISION HEALTH RESEARCH AT 1473 00:55:43,591 --> 00:55:47,195 NHGRI AND HER RESEARCH FOCUS ON 1474 00:55:47,195 --> 00:55:49,063 EFFORTS INVESTIGATE THE CLINICAL 1475 00:55:49,063 --> 00:55:51,432 UTILITY OF GENOMIC TECHNOLOGIES 1476 00:55:51,432 --> 00:55:52,700 AND TO DEVELOP BEST PRACTICES 1477 00:55:52,700 --> 00:55:54,602 FOR RETURN OF RESULTS SO THE 1478 00:55:54,602 --> 00:55:56,404 PERFECT PERSON TO FOLLOW BEN. 1479 00:55:56,404 --> 00:56:06,581 THANK YOU, JULIE. SNUL. 1480 00:56:06,581 --> 00:56:07,215 >> THANK YOU SO MUCH FOR THAT 1481 00:56:07,215 --> 00:56:08,516 INTRODUCTION AND THANK YOU, 1482 00:56:08,516 --> 00:56:09,517 EVERYBODY, IT'S ALWAYS GREAT TO 1483 00:56:09,517 --> 00:56:13,688 FOLLOW BEN. I THINK THAT I -- 1484 00:56:13,688 --> 00:56:15,189 IT'S ALWAYS GREAT AGAIN TO HEAR 1485 00:56:15,189 --> 00:56:17,225 SOME OF THE ETHICAL ARGUMENTS. 1486 00:56:17,225 --> 00:56:19,060 YOU KNOW, ONE OF MY FIRST 1487 00:56:19,060 --> 00:56:21,229 DISCLAIMERS HERE IS OF COURSE 1488 00:56:21,229 --> 00:56:23,764 LIKE MOST PEOPLE I THINK THAT 1489 00:56:23,764 --> 00:56:25,133 ARE TALKING, AS A FEDERAL 1490 00:56:25,133 --> 00:56:26,100 GOVERNMENT EMPLOYEE THESE ARE MY 1491 00:56:26,100 --> 00:56:28,536 OWN WORDS AND MY OWN OPINIONS. 1492 00:56:28,536 --> 00:56:29,837 BUT YOU KNOW I THINK THE OTHER 1493 00:56:29,837 --> 00:56:33,875 THING I WOULD WANT TO SHARE WITH 1494 00:56:33,875 --> 00:56:36,410 YOU GUYS IS I'M A TRAINED AS A 1495 00:56:36,410 --> 00:56:37,778 COUNSELOR BUT MOST OF MY 1496 00:56:37,778 --> 00:56:39,447 RESEARCH IS IN THIS FIELD OF 1497 00:56:39,447 --> 00:56:40,848 IMPLEMENTATION SCIENCE WHERE I 1498 00:56:40,848 --> 00:56:43,751 AM REALLY VERY FOCUSED ON KIND 1499 00:56:43,751 --> 00:56:47,221 OF PRACTICAL, PRAGMATIC 1500 00:56:47,221 --> 00:56:47,955 OUTCOMES. AND KIND OF THE, YOU 1501 00:56:47,955 --> 00:56:49,657 KNOW, WHERE THE RUBBER MEETS THE 1502 00:56:49,657 --> 00:56:51,058 ROAD WHEN WE START TO THINK 1503 00:56:51,058 --> 00:56:54,662 ABOUT THESE IDEAS AND HOW WE 1504 00:56:54,662 --> 00:56:55,696 OPERATIONALIZE THEM FOR PATIENTS 1505 00:56:55,696 --> 00:56:57,398 AND IN OUR WORK. IN THIS, YOU 1506 00:56:57,398 --> 00:56:59,000 KNOW, KIND OF MESSY ENVIRONMENT 1507 00:56:59,000 --> 00:57:00,067 WHERE WE'RE DOING THIS CLINICAL 1508 00:57:00,067 --> 00:57:03,204 RESEARCH WITH PEOPLE. SO, I 1509 00:57:03,204 --> 00:57:05,039 THINK YOU SHOULD JUST KNOW THAT 1510 00:57:05,039 --> 00:57:08,109 AGAIN, I HAVE THIS REALLY 1511 00:57:08,109 --> 00:57:09,210 PRAGMATIC APPROACH AND I AM 1512 00:57:09,210 --> 00:57:13,314 SITUATED AS A CLINICIAN AND I 1513 00:57:13,314 --> 00:57:15,383 ALSO DON'T REALLY HOLD WITH THIS 1514 00:57:15,383 --> 00:57:18,152 VIEW THAT GENETIC DATA IN ALMOST 1515 00:57:18,152 --> 00:57:19,954 ALL CASES IS REALLY DIFFERENT 1516 00:57:19,954 --> 00:57:21,722 FROM OTHER KINDS OF HEALTH DATA 1517 00:57:21,722 --> 00:57:24,892 AND SO THAT'S THAT IDEA OF 1518 00:57:24,892 --> 00:57:26,694 GENETIC EXCEPTIONALISM THAT BEN 1519 00:57:26,694 --> 00:57:28,296 MENTIONED. I JUST DON'T THINK 1520 00:57:28,296 --> 00:57:30,231 THAT THAT'S SOMETHING THAT WE 1521 00:57:30,231 --> 00:57:31,732 NEED TO SPEND A TON OF TIME 1522 00:57:31,732 --> 00:57:34,068 THINKING ABOUT AND I DON'T 1523 00:57:34,068 --> 00:57:37,238 REALLY HOLD WITH THAT VIEW TOO 1524 00:57:37,238 --> 00:57:39,440 MUCH. SO IN TERMS OF AN OUTLINE 1525 00:57:39,440 --> 00:57:41,209 HERE THERE'S TWO MAJOR BUCKETS 1526 00:57:41,209 --> 00:57:42,743 OF THINGS THAT I WANT TO TALK 1527 00:57:42,743 --> 00:57:45,680 ABOUT WHICH IS HOW RESEARCH 1528 00:57:45,680 --> 00:57:47,215 PARTICIPANTS THINK ABOUT OR FEEL 1529 00:57:47,215 --> 00:57:49,784 ABOUT GETTING GENOMIC DATA AS A 1530 00:57:49,784 --> 00:57:50,651 RESULT OF RESEARCH PARTICIPATION 1531 00:57:50,651 --> 00:57:51,919 AND THEN OF COURSE WHAT ARE THE 1532 00:57:51,919 --> 00:57:53,487 OUTCOMES? WHAT HAPPENS TO 1533 00:57:53,487 --> 00:57:56,591 PEOPLE ONCE THEY LEARN THIS KIND 1534 00:57:56,591 --> 00:57:59,493 OF INFORMATION? I THINK WHAT I 1535 00:57:59,493 --> 00:58:01,662 WILL DO IS REFINE THIS A LITTLE 1536 00:58:01,662 --> 00:58:04,699 BIT. AND FOCUS IN ON HOW 1537 00:58:04,699 --> 00:58:06,367 PEOPLE, JUST GENERALLY THINK 1538 00:58:06,367 --> 00:58:09,637 ABOUT AND REACT TO OPTIONS FOR 1539 00:58:09,637 --> 00:58:11,539 LEARNING GENETIC DATA AND THE 1540 00:58:11,539 --> 00:58:13,374 REASON I THINK IT'S IMPORTANT TO 1541 00:58:13,374 --> 00:58:15,743 THINK BEYOND RESEARCH 1542 00:58:15,743 --> 00:58:20,214 PARTICIPANT WHEN IS -- 1543 00:58:20,214 --> 00:58:22,516 PARTICIPANTS WHEN WE THINK ABOUT 1544 00:58:22,516 --> 00:58:23,985 THIS ANY PERSON CAN ENTER A 1545 00:58:23,985 --> 00:58:25,886 RESEARCH STUDY AND WE KNOW THERE 1546 00:58:25,886 --> 00:58:27,722 ARE RESEARCH STUDIES THAT ARE 1547 00:58:27,722 --> 00:58:28,289 RECRUITING PEOPLE FROM THE 1548 00:58:28,289 --> 00:58:29,423 GENERAL POPULATION TO 1549 00:58:29,423 --> 00:58:30,658 PARTICIPATE IN GENOMIC RESEARCH. 1550 00:58:30,658 --> 00:58:32,560 SO WE NEED TO THINK ABOUT -- I 1551 00:58:32,560 --> 00:58:34,262 THINK THE VIEWS OF THE GENERAL 1552 00:58:34,262 --> 00:58:35,363 PUBLIC ARE IMPORTANT TO THINK 1553 00:58:35,363 --> 00:58:37,231 ABOUT HERE AND AS BEN MENTIONED 1554 00:58:37,231 --> 00:58:38,899 MOST OF WHAT I'M GOING TO BE 1555 00:58:38,899 --> 00:58:41,435 TALKING ABOUT IS OUR, YOU KNOW, 1556 00:58:41,435 --> 00:58:43,337 WHAT WE UNDERSTAND ABOUT WHAT 1557 00:58:43,337 --> 00:58:44,772 HAPPENS TO PEOPLE ONCE THEY 1558 00:58:44,772 --> 00:58:47,308 LEARN ABOUT ACTIONABLE GENOMIC 1559 00:58:47,308 --> 00:58:49,510 DATA? AND SO, YOU KNOW, WHEN WE 1560 00:58:49,510 --> 00:58:51,746 THINK ABOUT ATTITUDES TOWARDS 1561 00:58:51,746 --> 00:58:54,048 THE RETURN OF RESULTS THERE HAVE 1562 00:58:54,048 --> 00:58:55,750 BEEN MANY, MUCH INK HAS BEEN 1563 00:58:55,750 --> 00:58:58,552 SPILLED ON THIS TOPIC AND I WILL 1564 00:58:58,552 --> 00:59:00,354 CIRCLE BACK TO THAT IN A MINUTE 1565 00:59:00,354 --> 00:59:04,492 BUT AS GENOMIC INTERROGATION 1566 00:59:04,492 --> 00:59:04,992 TECHNIQUES BECAME MORE 1567 00:59:04,992 --> 00:59:07,728 UBIQUITOUS AND MUCH LESS 1568 00:59:07,728 --> 00:59:08,929 EXPENSIVE THERE'S BEEN JUST A 1569 00:59:08,929 --> 00:59:14,969 LOCK OF WO-- LOT OF WORK DONE O 1570 00:59:14,969 --> 00:59:18,406 TRYING TO SOLICIT PREFERENCES OF 1571 00:59:18,406 --> 00:59:19,173 PEOPLE. 1572 00:59:19,173 --> 00:59:20,374 OF DIFFERENT GROUPS OF PEOPLE 1573 00:59:20,374 --> 00:59:22,810 TOWARDS GENOMIC DATA AND SO, YOU 1574 00:59:22,810 --> 00:59:25,680 KNOW, THERE'S WORK THAT'S BEEN 1575 00:59:25,680 --> 00:59:26,380 DONE WITH ASKING RESEARCH 1576 00:59:26,380 --> 00:59:27,748 PARTICIPANTS, WHAT KIND OF DATA 1577 00:59:27,748 --> 00:59:29,583 THEY WILL LIKE, THE GENERAL 1578 00:59:29,583 --> 00:59:31,719 PUBLIC, AND THEN OF COURSE, YOU 1579 00:59:31,719 --> 00:59:35,289 KNOW, SPECIFIC GROUPS. LIKE 1580 00:59:35,289 --> 00:59:38,993 PARENTS OF PEDIATRIC, SICK 1581 00:59:38,993 --> 00:59:41,362 CHILDREN BASICALLY, PATIENTS WHO 1582 00:59:41,362 --> 00:59:43,130 ARE PRESENTING WITH PARTICULAR, 1583 00:59:43,130 --> 00:59:45,633 YOU KNOW, DISEASE WHERE GENOMIC 1584 00:59:45,633 --> 00:59:46,467 INTERROGATION MIGHT BE HELPFUL. 1585 00:59:46,467 --> 00:59:50,404 AND THEN, AGAIN, SOME SUB 1586 00:59:50,404 --> 00:59:52,907 STUDIES OF EVEN MORE FINE 1587 00:59:52,907 --> 00:59:54,642 GRAINED PARTICIPANT ATTRIBUTES. 1588 00:59:54,642 --> 00:59:57,378 AND WHEN WE LOOK AT THIS BODY OF 1589 00:59:57,378 --> 00:59:59,146 LITERATURE, THERE IS AN 1590 00:59:59,146 --> 01:00:00,247 OVERWHELMING PREFERENCE FOR 1591 01:00:00,247 --> 01:00:02,016 RETURN OF RESULTS AND SO, AGAIN, 1592 01:00:02,016 --> 01:00:05,419 I THINK SOME OF THIS IS JUST 1593 01:00:05,419 --> 01:00:07,021 FURTHER SUBSTANTIATING THIS 1594 01:00:07,021 --> 01:00:08,589 ARGUMENT THAT, YOU KNOW, IF YOU 1595 01:00:08,589 --> 01:00:10,891 ASK PEOPLE WHAT THEY WANT, MANY 1596 01:00:10,891 --> 01:00:15,363 PEOPLE, THE FIST FIRST THING 1597 01:00:15,363 --> 01:00:16,764 THAT WILL COME TO MIND IS I 1598 01:00:16,764 --> 01:00:18,065 DON'T ACTUALLY WANT TO KNOW THIS 1599 01:00:18,065 --> 01:00:19,533 INFORMATION. ACROSS ALL OF 1600 01:00:19,533 --> 01:00:21,902 THESE STUDIES, IN, YOU KNOW, UP 1601 01:00:21,902 --> 01:00:24,538 TO 100% OF PEOPLE WHO 1602 01:00:24,538 --> 01:00:26,307 PARTICIPATE IN THIS KIND OF 1603 01:00:26,307 --> 01:00:27,641 WORK, SAY THAT THEY WANT 1604 01:00:27,641 --> 01:00:31,746 EVERYTHING THAT YOU CAN TELL ME. 1605 01:00:31,746 --> 01:00:33,748 IN GENERAL, WITH INCREASE 1606 01:00:33,748 --> 01:00:35,750 ACTIONABILITY, THERE IS AN 1607 01:00:35,750 --> 01:00:37,485 INCREASING PREFERENCE FOR 1608 01:00:37,485 --> 01:00:38,886 RETURN. SO MORE PEOPLE, IF YOU 1609 01:00:38,886 --> 01:00:41,021 GIVE THEM AN ARRAY OF CHOICES, 1610 01:00:41,021 --> 01:00:43,657 WOULD YOU LIKE TO KNOW ABOUT 1611 01:00:43,657 --> 01:00:45,993 THINGS LIKE YOUR ANCESTRY OR THE 1612 01:00:45,993 --> 01:00:47,428 BALDNESS EXAMPLE THAT WAS A 1613 01:00:47,428 --> 01:00:50,097 REALLY GOOD ONE OR A NON 1614 01:00:50,097 --> 01:00:51,399 TREATABLE DISEASE, PEOPLE HAVE 1615 01:00:51,399 --> 01:00:52,933 LESS INTEREST IN LEARNING SOME 1616 01:00:52,933 --> 01:00:55,736 OF THAT STUFF AND MORE INTEREST 1617 01:00:55,736 --> 01:00:57,772 IN LEARNING ABOUT ACTUAL RESULTS 1618 01:00:57,772 --> 01:00:59,740 THAT MAY MAKE A DIFFERENCE IN 1619 01:00:59,740 --> 01:01:01,742 THEIR HEALTH. BUT, YOU KNOW, 1620 01:01:01,742 --> 01:01:03,644 THIS IS NOT THE ONLY BOUNDARY 1621 01:01:03,644 --> 01:01:08,048 THAT PEOPLE WILL SICITE MANY 1622 01:01:08,048 --> 01:01:09,417 PEOPLE WILL SAY I WANT YOU TO 1623 01:01:09,417 --> 01:01:11,085 TELL ME EVEN IF IT'S NORMAL. I 1624 01:01:11,085 --> 01:01:13,454 EVEN WANT A NEGATIVE FINDINGS. 1625 01:01:13,454 --> 01:01:15,523 AND THEN PEOPLE ALSO WILL DESIRE 1626 01:01:15,523 --> 01:01:18,626 THEIR RAW SEQUENCE DATA. FOR 1627 01:01:18,626 --> 01:01:21,662 RESEARCH STUDIES EVEN IF THEY 1628 01:01:21,662 --> 01:01:27,234 DON'T HAVE THE EXPERTISE TO 1629 01:01:27,234 --> 01:01:30,070 INTERPRET THIS DATA THEY WANT TO 1630 01:01:30,070 --> 01:01:31,439 HAVE, YOU KNOW, EVERYTHING THAT 1631 01:01:31,439 --> 01:01:34,408 YOU COULD POSSIBLY TELL ME IS 1632 01:01:34,408 --> 01:01:36,577 WHAT MANY PEOPLE SAY. PEOPLE 1633 01:01:36,577 --> 01:01:40,581 ARE ALSO VERY INTERESTED AND 1634 01:01:40,581 --> 01:01:41,515 ROET MOTIVATED TO LEARN ABOUT 1635 01:01:41,515 --> 01:01:43,384 RESEARCH RESULTS THAT 1636 01:01:43,384 --> 01:01:44,585 RESEARCHERS THINK ARE 1637 01:01:44,585 --> 01:01:45,019 INTERESTING. 1638 01:01:45,019 --> 01:01:46,854 THEY'LL SAY IF YOU THINK IT'S 1639 01:01:46,854 --> 01:01:47,354 INTERESTING YOU SHOULD 1640 01:01:47,354 --> 01:01:48,589 DEFINITELY SHARE IT WITH ME EVEN 1641 01:01:48,589 --> 01:01:51,759 IF IT MIGHT BE INTERESTING FOR 1642 01:01:51,759 --> 01:01:52,827 SOME VERY ESOTERIC REASON THAT 1643 01:01:52,827 --> 01:01:55,529 HAS TO DO WITH SOME BIOCHEMICAL 1644 01:01:55,529 --> 01:01:57,031 FUNCTION THAT A NORMAL PERSON 1645 01:01:57,031 --> 01:01:58,732 MIGHT NOT REALLY CARE ABOUT. 1646 01:01:58,732 --> 01:02:00,067 PEOPLE STILL REALLY WANT THAT 1647 01:02:00,067 --> 01:02:01,502 KIND OF INFORMATION. AND A 1648 01:02:01,502 --> 01:02:03,704 VERY, VERY SMALL MINORITY OF 1649 01:02:03,704 --> 01:02:05,473 PEOPLE WILL SAY THAT THEY WANT 1650 01:02:05,473 --> 01:02:08,075 NONE OF THEIR GENETIC DATA BACK 1651 01:02:08,075 --> 01:02:09,777 OR THAT THEY ONLY WANT PRIMARY 1652 01:02:09,777 --> 01:02:11,679 DATA BACK AND WHAT I MEAN BY 1653 01:02:11,679 --> 01:02:15,749 PRIMARY DATA ARE GENETIC RESULTS 1654 01:02:15,749 --> 01:02:17,451 THAT RELATES SPECIFICALLY TO THE 1655 01:02:17,451 --> 01:02:18,886 REASON WHY THE SEQUENCING WAS 1656 01:02:18,886 --> 01:02:20,354 DONE IN THE FIRST PLACE. SO I 1657 01:02:20,354 --> 01:02:22,323 JOINED A RESEARCH STUDY BECAUSE 1658 01:02:22,323 --> 01:02:24,391 MY CHILD HAS AUTISM I ONLY WANT 1659 01:02:24,391 --> 01:02:26,460 RESULTS RELATED TO AUTISM THAT'S 1660 01:02:26,460 --> 01:02:27,862 IT. DON'T TELL ME ANYTHING ELSE 1661 01:02:27,862 --> 01:02:31,265 AND WHEN YOU ASK PEOPLE WHY THEY 1662 01:02:31,265 --> 01:02:33,634 WANT THIS INFORMATION THE MOST 1663 01:02:33,634 --> 01:02:34,802 SALIENT REASON OR THE PRIMARY 1664 01:02:34,802 --> 01:02:37,538 REASON IS THAT PEOPLE FIND THIS 1665 01:02:37,538 --> 01:02:38,873 TO BE VERY EMPOWERING. YOU 1666 01:02:38,873 --> 01:02:40,508 KNOW, THIS IDEA, AGAIN, THAT 1667 01:02:40,508 --> 01:02:43,744 KNOWLEDGE IS POWER, THAT THERE'S 1668 01:02:43,744 --> 01:02:45,980 SOMETHING THAT THEY COULD DO 1669 01:02:45,980 --> 01:02:47,348 WITH THE INFORMATION. RELATED 1670 01:02:47,348 --> 01:02:49,183 TO THAT MANY PEOPLE WILL TALK 1671 01:02:49,183 --> 01:02:50,718 ABOUT HOW, WELL THERE'S A 1672 01:02:50,718 --> 01:02:52,286 POTENTIAL FOR ME TO PREVENT 1673 01:02:52,286 --> 01:02:54,555 DISEASE IN MYSELF OR IN MY 1674 01:02:54,555 --> 01:02:55,756 FAMILY MEMBERS. WHICH IS, 1675 01:02:55,756 --> 01:02:57,057 AGAIN, RELATED TO THIS IDEA 1676 01:02:57,057 --> 01:03:00,160 THAT, YOU KNOW, PERHAPS THIS 1677 01:03:00,160 --> 01:03:05,432 COULD BE BENEFICIAL TO ME AND MY 1678 01:03:05,432 --> 01:03:07,568 RELATIVES. AND ALSO PEOPLE ARE 1679 01:03:07,568 --> 01:03:09,003 CURIOUS WHICH IS NOT ROCKET 1680 01:03:09,003 --> 01:03:11,105 SCIENCE. WE HAVE 23ANDME AND 1681 01:03:11,105 --> 01:03:18,279 ALL OF THESE DIRECT TO CONSU 1682 01:03:18,279 --> 01:03:18,946 CONSUMERS. THEY FEEL THEY COULD 1683 01:03:18,946 --> 01:03:20,414 KNOW THEMSELVES BETTER IN SOME 1684 01:03:20,414 --> 01:03:23,684 WAYS BY HAVING ACCESS TO THEIR 1685 01:03:23,684 --> 01:03:26,153 DNA. AND AGAIN I THINK THAT 1686 01:03:26,153 --> 01:03:29,690 RELATES TO THIS OTHER IDEA THAT 1687 01:03:29,690 --> 01:03:31,625 PEOPLE FIND THIS A WAY TO BE 1688 01:03:31,625 --> 01:03:33,561 THAT THEY CAN KIND OF EXPLORE 1689 01:03:33,561 --> 01:03:36,430 ATTRIBUTES ABOUT THEMSELVES THAT 1690 01:03:36,430 --> 01:03:38,432 MAYBE A CLINICIAN WOULDN'T PUT 1691 01:03:38,432 --> 01:03:41,001 AS, THE MOST HIGH PRIORITY ITEM, 1692 01:03:41,001 --> 01:03:45,005 LIKE ANCESTRY BUT HAS A LOT OF 1693 01:03:45,005 --> 01:03:46,006 PERSONAL UTILITY TO A PERSON. 1694 01:03:46,006 --> 01:03:47,408 SO THESE ARE ALL REASONS WHY 1695 01:03:47,408 --> 01:03:50,511 PEOPLE SAY THAT THEY WANT THIS 1696 01:03:50,511 --> 01:03:52,179 INFORMATION. AND THEY SAY THAT 1697 01:03:52,179 --> 01:03:53,147 THEY WANT ALL OF THIS 1698 01:03:53,147 --> 01:03:55,082 INFORMATION OR THEY WANT THEIR 1699 01:03:55,082 --> 01:03:59,219 GENETIC RESULTS EVEN AS THEY 1700 01:03:59,219 --> 01:04:03,157 CITE SOME OF THESE CONCERNS. 1701 01:04:03,157 --> 01:04:05,025 LIKE WHO IS GOING TO MAINTAIN MY 1702 01:04:05,025 --> 01:04:06,727 GENOMIC DATA AND HOW MIGHT IT BE 1703 01:04:06,727 --> 01:04:09,330 USED IN THE FUTURE. IS THERE A 1704 01:04:09,330 --> 01:04:10,397 BURDEN TO WHAT I MIGHT -- WHAT'S 1705 01:04:10,397 --> 01:04:11,932 THE BURDEN ASSOCIATED WITH THE 1706 01:04:11,932 --> 01:04:14,001 KNOWLEDGE THAT YOU'RE GOING TO 1707 01:04:14,001 --> 01:04:15,502 IMPART UPON ME. IS IT GOING TO 1708 01:04:15,502 --> 01:04:17,905 RESULT IN SOME SORT OF POOR 1709 01:04:17,905 --> 01:04:20,240 OUTCOME FOR MYSELF? PEOPLE ARE 1710 01:04:20,240 --> 01:04:22,543 ABLE TO KIND OF WEIGH AND THINK 1711 01:04:22,543 --> 01:04:25,512 ABOUT THESE RISKS, BUT THEY 1712 01:04:25,512 --> 01:04:27,114 CERTAINLY DO NOT OVERRIDE THIS 1713 01:04:27,114 --> 01:04:29,249 PREFERENCE OR RETURN. SO, 1714 01:04:29,249 --> 01:04:31,151 AGAIN, I THINK PEOPLE CAN 1715 01:04:31,151 --> 01:04:32,686 MANIPULATE THESE CONCEPTS IN 1716 01:04:32,686 --> 01:04:34,755 THEIR MINDS AND YET STILL COME 1717 01:04:34,755 --> 01:04:36,190 DOWN ON THE SIDE OF, YOU KNOW, 1718 01:04:36,190 --> 01:04:37,057 THIS IS SOMETHING THAT I REALLY, 1719 01:04:37,057 --> 01:04:38,993 REALLY WANT AND, AGAIN, I THINK 1720 01:04:38,993 --> 01:04:42,496 THIS REALLY SPEAKS TO THIS IDEA 1721 01:04:42,496 --> 01:04:44,031 THAT PEOPLE BELIEVE THAT THEIR 1722 01:04:44,031 --> 01:04:47,234 GENOMIC DATA ARE THEIR DATA. 1723 01:04:47,234 --> 01:04:49,970 THEY WANT TO CONTROL IT THEY 1724 01:04:49,970 --> 01:04:53,574 WANT TO KNOW WHO IS LOOKING AT 1725 01:04:53,574 --> 01:04:55,442 IT. WHEN YOU TALK TO RESEARCH 1726 01:04:55,442 --> 01:04:56,777 PARTICIPANTS THEY WILL SAY 1727 01:04:56,777 --> 01:04:58,445 THINGS LIKE NO ONE CARES AS MUCH 1728 01:04:58,445 --> 01:05:00,247 ABOUT MY SEQUENCE DATA AS I DO. 1729 01:05:00,247 --> 01:05:03,283 YOU KNOW, YOU MIGHT BE LOOKING 1730 01:05:03,283 --> 01:05:05,252 AT IT FOR THIS ONE REASON. BUT 1731 01:05:05,252 --> 01:05:07,187 I AM -- IF YOU GIVE IT TO ME 1732 01:05:07,187 --> 01:05:09,523 THEN I CAN REVISIT IT AND THINK 1733 01:05:09,523 --> 01:05:11,692 ABOUT IT OVER TIME AND TALK WITH 1734 01:05:11,692 --> 01:05:14,995 MY DOCTORS MOVING FORWARD. AND 1735 01:05:14,995 --> 01:05:17,131 SO, YOU KNOW, I AM UNCOMFORTABLE 1736 01:05:17,131 --> 01:05:19,500 WITH THIS IDEA OF SOMEONE ELSE 1737 01:05:19,500 --> 01:05:21,535 DETERMINING YOU KNOW, WHAT'S IN 1738 01:05:21,535 --> 01:05:26,473 MY BEST INTEREST. IN TERMS OF 1739 01:05:26,473 --> 01:05:29,276 MAKING DECISIONS FOR ME ABOUT 1740 01:05:29,276 --> 01:05:30,444 WHAT KIND OF STUFF I SHOULD 1741 01:05:30,444 --> 01:05:34,181 LEARN FROM RESEARCH SEQUENCING. 1742 01:05:34,181 --> 01:05:38,152 AND THEN I THINK AGAIN THE 1743 01:05:38,152 --> 01:05:39,319 CONVERSE OF THE RIGHT NOT TO 1744 01:05:39,319 --> 01:05:40,354 KNOW IT'S THE RIGHT TO KNOW. 1745 01:05:40,354 --> 01:05:47,061 IT'S MY DATA, I SHOULD HAVE A 1746 01:05:47,061 --> 01:05:49,029 AUTONOMY AND CONTROL OVER IT AND 1747 01:05:49,029 --> 01:05:51,398 PEOPLE LOOK AT THE TYPES OF DATA 1748 01:05:51,398 --> 01:05:54,601 AS GIVEN TO PEOPLE IS VIEWED AS 1749 01:05:54,601 --> 01:05:55,736 PATERNALISTIC GENERALLY BY 1750 01:05:55,736 --> 01:05:58,405 PEOPLE WHO ARE ASKED TO THINK 1751 01:05:58,405 --> 01:06:00,507 ABOUT WHAT KIND OF GENETIC DATA 1752 01:06:00,507 --> 01:06:02,376 THEY MIGHT WANT TO GET FROM 1753 01:06:02,376 --> 01:06:04,011 RESEARCH. SO WHEN YOU ASK 1754 01:06:04,011 --> 01:06:06,413 PEOPLE, YOU KNOW, OKAY, WE'VE 1755 01:06:06,413 --> 01:06:07,581 ESTABLISHED THAT YOU WANT TO 1756 01:06:07,581 --> 01:06:08,982 KNOW THIS INFORMATION, WHAT ARE 1757 01:06:08,982 --> 01:06:12,753 YOUR PREFERENCES FOR RETURNING, 1758 01:06:12,753 --> 01:06:15,155 YOU KNOW, FOR LEARNING THIS 1759 01:06:15,155 --> 01:06:16,957 INFORMATION? AND SO PEOPLE WILL 1760 01:06:16,957 --> 01:06:18,358 SAY AFTER BROAD CONSENT, SO THEY 1761 01:06:18,358 --> 01:06:20,828 WANT TO BE INFORMED ABOUT WHAT 1762 01:06:20,828 --> 01:06:22,529 KIND OF GENOMIC DATA ARE GOING 1763 01:06:22,529 --> 01:06:24,798 TO BE GENERATED AND THEY ALSO 1764 01:06:24,798 --> 01:06:28,202 REALLY WANT TO UNDERSTAND WHAT'S 1765 01:06:28,202 --> 01:06:29,737 THE PLAN TO GET THIS BACK TO ME 1766 01:06:29,737 --> 01:06:32,206 ARE YOU GOING TO CALL ME? ARE 1767 01:06:32,206 --> 01:06:33,574 YOU GOING TO SEND ME A LETTER 1768 01:06:33,574 --> 01:06:35,743 AND I THINK MANY PEOPLE HAVE 1769 01:06:35,743 --> 01:06:37,911 ARGUED AND WE HAVE A LOT OF GOOD 1770 01:06:37,911 --> 01:06:39,513 DATA TO SUGGEST THAT WHEN YOU 1771 01:06:39,513 --> 01:06:42,049 STICK TO A PLAN TO RETURN 1772 01:06:42,049 --> 01:06:44,118 RESULTS IT IS A GREAT WAY TO 1773 01:06:44,118 --> 01:06:45,986 FOSTER ONGOING PARTICIPANT 1774 01:06:45,986 --> 01:06:48,155 ENGAGEMENT. AND YOU KNOW WE 1775 01:06:48,155 --> 01:06:50,257 KNOW THAT HAVING PARTICIPANTS 1776 01:06:50,257 --> 01:06:51,125 ACTIVELY ENGAGED IN RESEARCH IS 1777 01:06:51,125 --> 01:06:54,528 JUST A HUGE PART OF THE WHOLE 1778 01:06:54,528 --> 01:06:55,729 ENTERPRISE. AND THEN THERE'S 1779 01:06:55,729 --> 01:06:58,799 SOME, YOU KNOW, DATA TO SUGGEST 1780 01:06:58,799 --> 01:07:01,602 THAT PEOPLE PREFER THINGS LIKE 1781 01:07:01,602 --> 01:07:02,402 FACE-TO-FACE GENETIC COUNSELING 1782 01:07:02,402 --> 01:07:03,737 FOR RETURN OF RESULTS BUT I 1783 01:07:03,737 --> 01:07:07,307 THINK THERE'S A LOT OF ROOM FOR 1784 01:07:07,307 --> 01:07:08,709 INNOVATION HERE AS WELL. AND 1785 01:07:08,709 --> 01:07:11,278 I'M GOING TO COME BACK TO THE 1786 01:07:11,278 --> 01:07:13,781 IDEA OF CONSENT A LITTLE BIT -- 1787 01:07:13,781 --> 01:07:15,916 A LITTLE BIT LATER. I'M GOING 1788 01:07:15,916 --> 01:07:17,584 TO AGAIN CITE BEN'S WORK HERE. 1789 01:07:17,584 --> 01:07:20,788 BECAUSE WE CAN LOOK AT PEOPLE 1790 01:07:20,788 --> 01:07:23,090 WHO REFUSE TO GET GENETIC DATA 1791 01:07:23,090 --> 01:07:26,727 AND SO, AGAIN, I WILL JUST 1792 01:07:26,727 --> 01:07:28,262 EMPHASIZE THAT THESE PEOPLE ARE 1793 01:07:28,262 --> 01:07:30,397 IN THE MINORITY. AND I THINK 1794 01:07:30,397 --> 01:07:31,732 ANOTHER REALLY IMPORTANT THING 1795 01:07:31,732 --> 01:07:34,168 TO BE AWARE OF WHEN WE'RE 1796 01:07:34,168 --> 01:07:36,537 LOOKING AT THIS LITERATURE IS 1797 01:07:36,537 --> 01:07:39,206 THAT A LOT OF SIT HYPOTHETICAL 1798 01:07:39,206 --> 01:07:42,142 OR ANALOG SO YOU WOULD ASK A 1799 01:07:42,142 --> 01:07:43,744 GROUP OF RESEARCH PARTICIPANTS 1800 01:07:43,744 --> 01:07:45,913 IF WE WERE ABLE TO IMPLEMENT 1801 01:07:45,913 --> 01:07:47,080 GENOMIC SEQUENCING IN OUR STUDY 1802 01:07:47,080 --> 01:07:48,882 WHAT CHOICES WOULD YOU MAKE OR 1803 01:07:48,882 --> 01:07:50,884 IF YOU WERE OFFERED THESE 1804 01:07:50,884 --> 01:07:52,319 CHOICES WHICH SOUND BEST TO YOU? 1805 01:07:52,319 --> 01:07:54,521 THERE'S THE BODY OF LITERATURE 1806 01:07:54,521 --> 01:07:55,522 THAT'S FOCUSED ON PEOPLE WHO ARE 1807 01:07:55,522 --> 01:07:57,925 ACTUALLY MAKING THESE DECISIONS 1808 01:07:57,925 --> 01:07:59,960 IS MUCH SMALLER COMPARED TO THE 1809 01:07:59,960 --> 01:08:01,895 GROUP OF PEOPLE WHO ARE -- THE 1810 01:08:01,895 --> 01:08:02,830 LITERATURE THAT'S ON PEOPLE WHO 1811 01:08:02,830 --> 01:08:04,631 ARE ACTUALLY MAKING SOME OF 1812 01:08:04,631 --> 01:08:06,400 THESE CHOICES. AND AS BEN 1813 01:08:06,400 --> 01:08:09,469 POINTED OUT, THIS REFUSAL MAY 1814 01:08:09,469 --> 01:08:12,906 NOT BE DURABLE AND SO, AGAIN, 1815 01:08:12,906 --> 01:08:15,409 THERE'S SOME DATA TO SUGGEST 1816 01:08:15,409 --> 01:08:17,277 THAT PEOPLE CAN CHANGE THEIR 1817 01:08:17,277 --> 01:08:21,215 MINDS ON THIS OVER TIME AND BY 1818 01:08:21,215 --> 01:08:22,482 KIND OF HAPPENSTANCE I HAVE 1819 01:08:22,482 --> 01:08:25,085 TALKED TO SOME OF THESE PEOPLE, 1820 01:08:25,085 --> 01:08:27,454 THESE REFUSERS AND RETURNED 1821 01:08:27,454 --> 01:08:29,256 SECONDARY FINDINGS TO THEM. AND 1822 01:08:29,256 --> 01:08:31,358 THEY ARE FINE. IT'S ANECDOTAL 1823 01:08:31,358 --> 01:08:33,827 DATA BUT THEY WERE FINE. AND I 1824 01:08:33,827 --> 01:08:35,262 THINK ONE THING THAT IS AN 1825 01:08:35,262 --> 01:08:36,797 INTERESTING POINT THAT I WILL 1826 01:08:36,797 --> 01:08:37,564 MENTION HERE BECAUSE YOU MIGHT 1827 01:08:37,564 --> 01:08:39,766 BE ASKING YOURSELF, WELL, IF 1828 01:08:39,766 --> 01:08:42,002 THEY REFUSED, HOW DID YOU COME 1829 01:08:42,002 --> 01:08:50,010 TO TALK TO THEM? AND THIS IS 1830 01:08:50,010 --> 01:08:50,744 ANOTHER PRACTICAL ARGUMENT 1831 01:08:50,744 --> 01:08:53,013 AGAINST THINGS LIKE CHECK BOXES. 1832 01:08:53,013 --> 01:08:55,749 THERE'S A LOT OF POSSIBILITIES 1833 01:08:55,749 --> 01:08:58,085 FOR DATA INTEGRITY ISSUES TO 1834 01:08:58,085 --> 01:08:59,887 COME INTO PLAY. SO IF SOMEONE 1835 01:08:59,887 --> 01:09:02,556 CHECKS THE BOX NO, ON A PAPER 1836 01:09:02,556 --> 01:09:04,224 CONSENT FORM THEN THAT CHOICE 1837 01:09:04,224 --> 01:09:07,661 NEEDS TO BE CARRIED FORWARD WITH 1838 01:09:07,661 --> 01:09:09,763 FIDELITY INTO WHATEVER YOUR KIND 1839 01:09:09,763 --> 01:09:12,666 OF RESEARCH DATABASE IS AND SO I 1840 01:09:12,666 --> 01:09:15,569 JUST THINK IT INTRODUCES A LOT 1841 01:09:15,569 --> 01:09:16,970 OF POTENTIAL FOR KIND OF 1842 01:09:16,970 --> 01:09:18,171 BIDIRECTIONAL ERROR. WHERE YOU 1843 01:09:18,171 --> 01:09:20,007 DO FIND YOURSELF IN A POSITION 1844 01:09:20,007 --> 01:09:21,708 WHERE, YOU KNOW, MAYBE WE 1845 01:09:21,708 --> 01:09:23,277 WEREN'T REALLY SUPPOSED TO BE 1846 01:09:23,277 --> 01:09:25,512 ANALYZING THIS SEQUENCE DATA 1847 01:09:25,512 --> 01:09:27,047 THIS PERSON BECAUSE THEY CHECKED 1848 01:09:27,047 --> 01:09:28,582 THE BOX FOR NO BUT WE DID 1849 01:09:28,582 --> 01:09:30,183 ANALYZE THE DATA AND WE'RE 1850 01:09:30,183 --> 01:09:33,020 EXACTLY IN THE BOX OF THE SECOND 1851 01:09:33,020 --> 01:09:34,788 CASE THAT BEN MENTIONED WHERE WE 1852 01:09:34,788 --> 01:09:36,423 KNOW SOMETHING ABOUT SOMEBODY. 1853 01:09:36,423 --> 01:09:39,159 THEY SAID NO, HOW DO WE GO BACK 1854 01:09:39,159 --> 01:09:40,427 AND TALK TO THEM BECAUSE NOW WE 1855 01:09:40,427 --> 01:09:43,697 KNOW THIS INFORMATION. AND I 1856 01:09:43,697 --> 01:09:47,267 THINK IT'S A DIFFERENT SITUATION 1857 01:09:47,267 --> 01:09:52,773 WHERE YOU DON'T ACTUALLY SEEK IS 1858 01:09:52,773 --> 01:09:54,541 DATA FROM THE SEQUENCE DATA THAT 1859 01:09:54,541 --> 01:09:57,244 YOU GENERATE. YOU DON'T SEEK 1860 01:09:57,244 --> 01:09:59,646 THESE FINDINGS. IT'S A BIT OF A 1861 01:09:59,646 --> 01:10:03,750 TANGENT BUT THINKING ABOUT HOW 1862 01:10:03,750 --> 01:10:11,692 WE CAT SGEGORIZE PEOPLE'S CHOIC 1863 01:10:11,692 --> 01:10:12,626 IS ANOTHER OPPORTUNITY TO 1864 01:10:12,626 --> 01:10:15,128 INTRODUCE ERROR. SO I THINK 1865 01:10:15,128 --> 01:10:16,596 WHEN WE THINK ABOUT, YOU KNOW, 1866 01:10:16,596 --> 01:10:19,700 THIS WHOLE TOPIC, WE ARE STILL 1867 01:10:19,700 --> 01:10:23,003 IN A SITUATION WHERE WE KNOW 1868 01:10:23,003 --> 01:10:25,105 MUCH MORE ABOUT PEOPLE'S 1869 01:10:25,105 --> 01:10:27,541 ATTITUDES ABOUT GENOMIC DATA. 1870 01:10:27,541 --> 01:10:29,876 AND WHETHER OR NOT RESEARCH, HOW 1871 01:10:29,876 --> 01:10:31,044 RESEARCH PARTICIPANTS FEEL ABOUT 1872 01:10:31,044 --> 01:10:33,947 GETTING THESE KINDS OF DATA. 1873 01:10:33,947 --> 01:10:36,783 COMPARED TO WHAT THE OUTCOMES 1874 01:10:36,783 --> 01:10:38,485 ARE. AND SO I'M GOING TO KIND 1875 01:10:38,485 --> 01:10:40,420 OF TRANSITION A LITTLE BIT INTO 1876 01:10:40,420 --> 01:10:41,254 TALKING ABOUT OUTCOMES BECAUSE I 1877 01:10:41,254 --> 01:10:44,791 THINK WE NEED TO SHIFT THIS 1878 01:10:44,791 --> 01:10:47,127 RATIO, AGAIN, A LOT OF INK HAS 1879 01:10:47,127 --> 01:10:48,895 BEEN SPILLED OVER WHAT OUGHT WE 1880 01:10:48,895 --> 01:10:52,332 TO DO AND WHY OUGHT WE TO DO IT 1881 01:10:52,332 --> 01:10:54,434 AND LESS HAS BEEN ON THIS AREA 1882 01:10:54,434 --> 01:10:55,402 OF WELL, WHAT HAPPENS WHEN WE 1883 01:10:55,402 --> 01:10:58,071 MAKE DECISIONS. WHAT ARE THE 1884 01:10:58,071 --> 01:10:59,106 OUTCOMES ASSOCIATED WITH SOME OF 1885 01:10:59,106 --> 01:11:02,142 THOSE DECISIONS? AND I THINK 1886 01:11:02,142 --> 01:11:05,212 THIS IS A POINT TO REVISIT ONE 1887 01:11:05,212 --> 01:11:07,814 OF, YOU KNOW, REVISIT CONSENT IN 1888 01:11:07,814 --> 01:11:10,517 ONE WAY WHICH IS, YOU KNOW, OVER 1889 01:11:10,517 --> 01:11:12,619 THE YEARS I'VE TALKED -- I'VE 1890 01:11:12,619 --> 01:11:13,820 CONSENTED MANY PEOPLE FOR 1891 01:11:13,820 --> 01:11:15,689 GENOMIC SEQUENCING WITH RETURN 1892 01:11:15,689 --> 01:11:17,257 OF SECONDARY FINDINGS AND I 1893 01:11:17,257 --> 01:11:19,726 ALWAYS LIKE IT WHEN PEOPLE 1894 01:11:19,726 --> 01:11:21,862 DECLINE PARTICIPATION IN 1895 01:11:21,862 --> 01:11:24,164 RESEARCH STUDIES. YOU REALLY 1896 01:11:24,164 --> 01:11:27,234 SHOULDN'T IDEALLY HAVE 100% OF 1897 01:11:27,234 --> 01:11:29,269 YOUR PROSPECTIVE PARTICIPANTS 1898 01:11:29,269 --> 01:11:32,139 SIGNING THAT CONSENT FORM. 1899 01:11:32,139 --> 01:11:33,073 RIGHT? IT'S GREAT IF MOST 1900 01:11:33,073 --> 01:11:35,742 EVERYBODY DOES BUT I THINK IT'S 1901 01:11:35,742 --> 01:11:37,611 A REALLY GREAT, I DON'T KNOW, I 1902 01:11:37,611 --> 01:11:39,746 LIKE IT WHEN PEOPLE DECLINE 1903 01:11:39,746 --> 01:11:40,514 BECAUSE TO ME IT'S AN INTERNAL 1904 01:11:40,514 --> 01:11:43,483 CHECK THAT I'M DOING IT RIGHT. 1905 01:11:43,483 --> 01:11:46,620 BECAUSE NOT EVERYONE WHO I TALK 1906 01:11:46,620 --> 01:11:47,788 TO COULD POSSIBLY WANT TO BE IN 1907 01:11:47,788 --> 01:11:50,257 MY STUDY EVEN WITH THE SELECTED 1908 01:11:50,257 --> 01:11:51,024 POPULATION THAT COME THROUGH TO 1909 01:11:51,024 --> 01:11:53,193 HAVE THAT CONVERSATION WITH ME 1910 01:11:53,193 --> 01:11:55,729 AND I THINK THE CASES IN WHICH 1911 01:11:55,729 --> 01:11:57,264 I'VE TALKED TO PEOPLE AND THEY 1912 01:11:57,264 --> 01:11:58,765 ARE CONCERNED ABOUT RECEIVING 1913 01:11:58,765 --> 01:12:00,100 THESE FINDINGS KIND OF AGAIN GO 1914 01:12:00,100 --> 01:12:02,169 ALONG WITH WHAT SOME OF THE 1915 01:12:02,169 --> 01:12:04,337 THINGS THAT BEN WAS SAYING ABOUT 1916 01:12:04,337 --> 01:12:07,274 THESE, LIKE, SPECIFIC INSTANCES. 1917 01:12:07,274 --> 01:12:11,278 YOU KNOW, I'VE HAD A COUPLE OF 1918 01:12:11,278 --> 01:12:12,579 PEOPLE IN THE MILITARY AND HAVE 1919 01:12:12,579 --> 01:12:14,414 BEEN REALLY CONCERNED ABOUT 1920 01:12:14,414 --> 01:12:15,649 WHERE THEIR GENOMIC DATA ARE 1921 01:12:15,649 --> 01:12:19,319 GOING AND HOW THAT WILL AFFECT 1922 01:12:19,319 --> 01:12:23,757 THEIR POTENTIAL FITNESS AND 1923 01:12:23,757 --> 01:12:26,026 CONCERNS THAT THAT WILL 1924 01:12:26,026 --> 01:12:27,194 DISCHARGE THAT'S A REALLY 1925 01:12:27,194 --> 01:12:27,928 SPECIFIC AND IMPORTANT CASE THAT 1926 01:12:27,928 --> 01:12:30,430 IS IMPORTANT TO TALK ABOUT. IN 1927 01:12:30,430 --> 01:12:34,301 ANOTHER CASE I'VE WORKED WITH 1928 01:12:34,301 --> 01:12:37,437 SOME FAMILIES WHERE THERE ARE 1929 01:12:37,437 --> 01:12:38,638 SOME PROGRAMS WHERE THERE'S 1930 01:12:38,638 --> 01:12:41,274 CARRIER SCREENING FOR GENETIC 1931 01:12:41,274 --> 01:12:42,209 CONDITIONS THAT ARE REALLY MORE 1932 01:12:42,209 --> 01:12:44,778 COMMON IN A CERTAIN POPULATION. 1933 01:12:44,778 --> 01:12:47,280 AND SO THERE ARE KIND OF 1934 01:12:47,280 --> 01:12:48,548 COMMUNITY GENETIC SCREENING 1935 01:12:48,548 --> 01:12:50,650 INITIATIVES THAT ARE, AGAIN, 1936 01:12:50,650 --> 01:12:52,052 COMMUNITY LED, COMMUNITY 1937 01:12:52,052 --> 01:12:53,520 ORGANIZED, AND ONE OF THE 1938 01:12:53,520 --> 01:12:56,022 FEATURES OF SOME OF THOSE 1939 01:12:56,022 --> 01:12:59,292 PROGRAMS IS THAT PEOPLE WHO 1940 01:12:59,292 --> 01:13:00,594 PARTICIPATE IN THE PROGRAM DON'T 1941 01:13:00,594 --> 01:13:01,995 LEARN THEIR INDIVIDUAL RESULTS 1942 01:13:01,995 --> 01:13:04,030 BECAUSE THE PURPOSE OF THE 1943 01:13:04,030 --> 01:13:05,499 PROGRAM IS TO HELP MAKE SURE 1944 01:13:05,499 --> 01:13:09,136 THAT A POTENTIAL PARTNER DOESN'T 1945 01:13:09,136 --> 01:13:11,304 CARRY THE SAME PATHOGENIC 1946 01:13:11,304 --> 01:13:12,873 VARIANT FOR A SPECIFIC CONDITION 1947 01:13:12,873 --> 01:13:16,543 THAT THEY MIGHT SO IT REDUCES 1948 01:13:16,543 --> 01:13:17,944 THE PROBABILITY THAT THEY WOULD 1949 01:13:17,944 --> 01:13:19,746 HAVE AN AFFECTED CHILD THE 1950 01:13:19,746 --> 01:13:23,750 PARTNERSHIP IS ANALYZED AND THE 1951 01:13:23,750 --> 01:13:25,285 POTENTIAL FOR THE PERSPECTIVE 1952 01:13:25,285 --> 01:13:26,419 PARTNERSHIP TO HAVE AN INCREASED 1953 01:13:26,419 --> 01:13:28,421 RISK TO HAVE A CHILD WITH ONE OF 1954 01:13:28,421 --> 01:13:29,923 THESE CONDITIONS IS KIND OF 1955 01:13:29,923 --> 01:13:31,658 LOOKED AT ON A COMMUNITY LEVEL 1956 01:13:31,658 --> 01:13:34,594 BUT INDIVIDUAL RESULTS ARE NOT 1957 01:13:34,594 --> 01:13:37,264 RETURNED BECAUSE THAT WOULD BE 1958 01:13:37,264 --> 01:13:39,232 STIGMATIZING. THIS IS SUCH A 1959 01:13:39,232 --> 01:13:40,133 SPECIFIC SITUATION THAT IT'S 1960 01:13:40,133 --> 01:13:41,868 GREAT. THAT PEOPLE HAVE, AGAIN, 1961 01:13:41,868 --> 01:13:43,403 BROUGHT THIS UP AND I THINK 1962 01:13:43,403 --> 01:13:44,037 THAT'S SOMETHING THAT ABSOLUTELY 1963 01:13:44,037 --> 01:13:46,339 SHOULD BE ACCOMMODATED. AND 1964 01:13:46,339 --> 01:13:47,474 THEN, YOU KNOW, IN OTHER 1965 01:13:47,474 --> 01:13:48,775 INSTANCES I'VE HAD PEOPLE TALK 1966 01:13:48,775 --> 01:13:50,210 ABOUT HOW, YOU KNOW, THEY JUST 1967 01:13:50,210 --> 01:13:53,480 FEEL UNCOMFORTABLE WITH GENETIC 1968 01:13:53,480 --> 01:13:54,381 DATA. BECAUSE THEY THOUGHT 1969 01:13:54,381 --> 01:13:58,552 ABOUT WHAT DOES THAT MEAN FOR 1970 01:13:58,552 --> 01:13:59,319 CHOICES THAT PEOPLE MIGHT MAKE 1971 01:13:59,319 --> 01:14:00,887 IN A REPRODUCTIVE SETTING. 1972 01:14:00,887 --> 01:14:04,357 RIGHT? I THINK THESE ARE ALL 1973 01:14:04,357 --> 01:14:05,926 REALLY SPECIFIC EXAMPLES THAT 1974 01:14:05,926 --> 01:14:08,328 ARE WORTH EXPLORING BUT 1975 01:14:08,328 --> 01:14:09,462 HOPEFULLY YOU CAN KIND OF TELL 1976 01:14:09,462 --> 01:14:11,298 FROM WHAT I'M SAYING AND WHAT 1977 01:14:11,298 --> 01:14:13,867 BEN WAS SAYING IS THESE ARE 1978 01:14:13,867 --> 01:14:15,335 SUPER, SUPER SPECIFIC AND AGAIN 1979 01:14:15,335 --> 01:14:16,736 WE REALLY NEED TO THINK ABOUT 1980 01:14:16,736 --> 01:14:18,205 THIS IDEA THAT WE HAVE A HUGE 1981 01:14:18,205 --> 01:14:20,240 AMOUNT OF DATA TO SUGGEST THAT 1982 01:14:20,240 --> 01:14:22,976 BY AND LARGE PEOPLE WANT US TO 1983 01:14:22,976 --> 01:14:26,112 TELL THEM THESE KINDS OF THINGS. 1984 01:14:26,112 --> 01:14:27,747 SO I JUST WANT TO TAKE A STEP 1985 01:14:27,747 --> 01:14:29,115 BACK BEFORE WE START TALKING 1986 01:14:29,115 --> 01:14:32,052 ABOUT OUTCOMES AND, AGAIN, SOME 1987 01:14:32,052 --> 01:14:33,920 PRACTICAL CONSIDERATIONS. IN 1988 01:14:33,920 --> 01:14:37,157 RETURNING THESE KINDS OF 1989 01:14:37,157 --> 01:14:42,195 FINDINGS, TO JUST TAKE A MOMENT 1990 01:14:42,195 --> 01:14:44,030 TO FIND THEM. I HAVE THE COMIC 1991 01:14:44,030 --> 01:14:47,734 ALSO JUST LIKE BEN AND WHAT'S 1992 01:14:47,734 --> 01:14:50,904 INTERESTING ABOUT THIS AND THE 1993 01:14:50,904 --> 01:14:53,273 COMIC THAT BEN PUT UP ALSO IS 1994 01:14:53,273 --> 01:14:54,407 THAT, YOU KNOW, I THINK THAT 1995 01:14:54,407 --> 01:14:56,910 WHEN YOU TALK TO A PERSON IN THE 1996 01:14:56,910 --> 01:14:58,211 GENERAL PUBLIC ABOUT LIKE 1997 01:14:58,211 --> 01:15:02,048 GENETIC DATA, YOU KNOW, I THINK 1998 01:15:02,048 --> 01:15:05,151 THAT WHAT THEY ARE HOPING FOR 1999 01:15:05,151 --> 01:15:06,286 AND WHAT MIGHT HAPPEN IN THE 2000 01:15:06,286 --> 01:15:07,487 FUTURE IS THAT AT SOME POINT 2001 01:15:07,487 --> 01:15:12,259 WE'RE GOING TO GO TO THE DOCTOR, 2002 01:15:12,259 --> 01:15:15,095 THEY'LL DO A FINGER STICK AND 2003 01:15:15,095 --> 01:15:16,796 PUT A DROP OF BLOOD IN A MACHINE 2004 01:15:16,796 --> 01:15:19,299 IN THE BACK AND COME OUT WITH A 2005 01:15:19,299 --> 01:15:21,534 RESULTS REPORT AND PRESCRIBE TO 2006 01:15:21,534 --> 01:15:23,770 YOU WAYS TO CHANGE YOUR LIFE OR 2007 01:15:23,770 --> 01:15:25,805 CHANGE YOUR HEALTH CARE TO MAKE 2008 01:15:25,805 --> 01:15:26,740 YOU HEALTHIER. RIGHT? SO 2009 01:15:26,740 --> 01:15:28,408 THEY'RE GOING TO TALK TO YOU 2010 01:15:28,408 --> 01:15:31,745 ABOUT HOW YOU'RE MORE LIKELY TO 2011 01:15:31,745 --> 01:15:33,179 HAVE DIABETES OR PEOPLE 2012 01:15:33,179 --> 01:15:34,948 SHOULDN'T HAVE GLUTEN. I THINK 2013 01:15:34,948 --> 01:15:36,983 PEOPLE THINK ABOUT THAT WHEN 2014 01:15:36,983 --> 01:15:38,385 THINK THINK ABOUT THE UTILITY OF 2015 01:15:38,385 --> 01:15:42,722 GENETIC INFORMATION IN A HEALTH 2016 01:15:42,722 --> 01:15:43,223 SETT 2017 01:15:43,223 --> 01:15:43,490 SETTING. 2018 01:15:43,490 --> 01:15:44,824 AND I THINK THAT'S A CONTEXT 2019 01:15:44,824 --> 01:15:46,760 THAT I THINK ABOUT IN TALKING 2020 01:15:46,760 --> 01:15:49,095 WITH PEOPLE ABOUT EXACTLY WHAT 2021 01:15:49,095 --> 01:15:49,929 IT IS THAT WE FIND. BECAUSE 2022 01:15:49,929 --> 01:15:53,199 WE'RE STILL AT THE POINT WHERE 2023 01:15:53,199 --> 01:15:54,200 THE KINDS OF FINDINGS THAT WE 2024 01:15:54,200 --> 01:15:56,903 WOULD PROPOSE TO RETURN TO 2025 01:15:56,903 --> 01:16:00,206 PEOPLE THROUGH AN OPPORTUNISTIC 2026 01:16:00,206 --> 01:16:01,308 SCREENING PROGRAM ARE MUCH MORE 2027 01:16:01,308 --> 01:16:04,644 DELIMITED AND THEY TAKE A LOT 2028 01:16:04,644 --> 01:16:05,979 MORE EFFORT TO PRODUCE THAN 2029 01:16:05,979 --> 01:16:08,782 JUST, AGAIN, PUTTING A DROP OF 2030 01:16:08,782 --> 01:16:09,783 BLOOD IN THE MACHINE IN THE 2031 01:16:09,783 --> 01:16:12,052 BACK. RIGHT? AND SO, YOU KNOW, 2032 01:16:12,052 --> 01:16:14,220 I THINK IT'S IMPORTANT TO 2033 01:16:14,220 --> 01:16:17,324 DISCUSS THIS IDEA THAT WHEN WE 2034 01:16:17,324 --> 01:16:27,867 ARE RETURNING RESEARCH RESULTS 2035 01:16:29,602 --> 01:16:34,107 IT'S NOT A POPULATION SCREENING. 2036 01:16:34,107 --> 01:16:35,275 I DO THINK THAT THE GOAL THAT 2037 01:16:35,275 --> 01:16:37,944 WE'RE ALL TRYING TO GET TO AS 2038 01:16:37,944 --> 01:16:39,579 BEN MENTIONED IS TO INCORPORATE 2039 01:16:39,579 --> 01:16:41,881 GENOMIC DATA INTO OUR HEALTH 2040 01:16:41,881 --> 01:16:42,949 CARE MORE BROADLY BUT THERE ARE 2041 01:16:42,949 --> 01:16:47,320 A LOT OF THINGS WE CAN LEARN 2042 01:16:47,320 --> 01:16:48,888 FROM MOMENT IN TIME WHEN WE ARE 2043 01:16:48,888 --> 01:16:51,958 GIVING THIS INFORMATION BACK TO 2044 01:16:51,958 --> 01:16:53,693 PEOPLE WHO ARE IN A CERTAIN 2045 01:16:53,693 --> 01:16:56,396 PLACE AND TIME, RIGHT? IF YOU 2046 01:16:56,396 --> 01:16:58,398 HAVE THE -- IF YOU ARE JOINING A 2047 01:16:58,398 --> 01:17:00,200 RESEARCH STUDY WHERE GENOMIC 2048 01:17:00,200 --> 01:17:02,268 SEQUENCING IS PART OF IT YOU 2049 01:17:02,268 --> 01:17:03,403 MIGHT HAVE THE OPPORTUNITY TO 2050 01:17:03,403 --> 01:17:05,205 HAVE YOUR, YOU KNOW, SOME OF 2051 01:17:05,205 --> 01:17:06,706 THESE FINDINGS RETURNED TO YOU 2052 01:17:06,706 --> 01:17:08,041 AS OPPOSED TO, YOU KNOW, WHAT IF 2053 01:17:08,041 --> 01:17:10,844 WE WERE TO IMPLEMENT THIS ON THE 2054 01:17:10,844 --> 01:17:12,812 OVULATION LEVEL. AND, AGAIN, I 2055 01:17:12,812 --> 01:17:14,114 THINK IT'S ALSO IMPORTANT TO 2056 01:17:14,114 --> 01:17:15,548 THINK ABOUT THE FACT THAT WHAT 2057 01:17:15,548 --> 01:17:17,584 WE'RE REALLY DOING HERE IN MOST 2058 01:17:17,584 --> 01:17:19,719 INSTANCES IS REPURPOSING THIS 2059 01:17:19,719 --> 01:17:21,988 LIST OF VARIANTS THAT WAS 2060 01:17:21,988 --> 01:17:24,657 PUBLISHED NOT VARIANTS, GENES, 2061 01:17:24,657 --> 01:17:26,426 BUT SPECIFIC VARIANTS THAT HAVE 2062 01:17:26,426 --> 01:17:28,595 SPECIFIC ATTRIBUTES IN SPECIFIC 2063 01:17:28,595 --> 01:17:31,164 GENES BY THE AMERICAN COLLEGE OF 2064 01:17:31,164 --> 01:17:32,832 AMERICAN GENETICS AND GENOMICS 2065 01:17:32,832 --> 01:17:34,501 AND THIS LIST WAS DEVELOPED 2066 01:17:34,501 --> 01:17:37,337 BECAUSE -- IT WAS DEVELOPED FOR 2067 01:17:37,337 --> 01:17:37,971 CLINICAL LABORATORIES, RIGHT? 2068 01:17:37,971 --> 01:17:40,407 SO MANY, MANY MORE PEOPLE ARE 2069 01:17:40,407 --> 01:17:44,377 HAVING CLINICAL GENOME 2070 01:17:44,377 --> 01:17:45,445 SEQUENCING. AND THE -- THIS 2071 01:17:45,445 --> 01:17:47,614 LIST AND THIS POLICY WAS 2072 01:17:47,614 --> 01:17:51,384 DEVELOPED FOR, YOU KNOW, HOW 2073 01:17:51,384 --> 01:17:52,585 SHOULD CLINICAL LABORATORIES 2074 01:17:52,585 --> 01:17:53,353 ESSENTIALLY HANDLE THE PROBLEM 2075 01:17:53,353 --> 01:17:55,655 FROM BEN'S CASE, RIGHT? THEY 2076 01:17:55,655 --> 01:17:57,257 WERE ASKED TO ANALYZE GENOMIC 2077 01:17:57,257 --> 01:17:59,726 DATA TO TRY TO UNDERSTAND WHY 2078 01:17:59,726 --> 01:18:01,561 SOMEONE MIGHT HAVE, YOU KNOW, 2079 01:18:01,561 --> 01:18:03,730 AUTISM OR A SEIZURE DISORDER OR 2080 01:18:03,730 --> 01:18:04,697 SOMETHING LIKE THAT BUT THEY ARE 2081 01:18:04,697 --> 01:18:07,233 IN A POSITION TO KNOW MUCH MORE. 2082 01:18:07,233 --> 01:18:08,501 HOW SHOULD THEY HANDLE THAT AND 2083 01:18:08,501 --> 01:18:10,303 THE CONSENSUS WAS THAT WELL, 2084 01:18:10,303 --> 01:18:11,538 THEY SHOULD LOOK FOR THESE 2085 01:18:11,538 --> 01:18:13,940 THINGS AND THEY SHOULD RETURN 2086 01:18:13,940 --> 01:18:15,175 THEM TO PEOPLE WHEN PEOPLE 2087 01:18:15,175 --> 01:18:16,976 EXPRESS A PREFERENCE TO LEARN 2088 01:18:16,976 --> 01:18:18,645 THIS INFORMATION. AND SO I 2089 01:18:18,645 --> 01:18:20,780 THINK, YOU KNOW, THE KEY 2090 01:18:20,780 --> 01:18:21,815 ATTRIBUTE OF ALL OF THESE 2091 01:18:21,815 --> 01:18:23,249 SECONDARY FINDINGS THAT WE'RE 2092 01:18:23,249 --> 01:18:25,318 TALKING ABOUT IS THAT THEY ARE 2093 01:18:25,318 --> 01:18:26,419 ACTIONABLE AS BEN MENTIONED SO 2094 01:18:26,419 --> 01:18:29,222 IF YOU WERE TO KNOW ABOUT THIS, 2095 01:18:29,222 --> 01:18:30,223 THERE WAS -- THERE'S SOMETHING 2096 01:18:30,223 --> 01:18:32,225 YOU COULD DO ABOUT IT. AND I 2097 01:18:32,225 --> 01:18:33,393 THINK ANOTHER THING THAT'S 2098 01:18:33,393 --> 01:18:34,661 IMPORTANT TO KNOW IS THAT, YOU 2099 01:18:34,661 --> 01:18:35,895 KNOW, MOST OF THE FIND -- MOST 2100 01:18:35,895 --> 01:18:39,332 OF THE DISORDERS ON THE LIST 2101 01:18:39,332 --> 01:18:43,703 ARE -- HAVE AUTOSOMAL DOMINANT 2102 01:18:43,703 --> 01:18:45,371 INHERITANCE, THAT MEANS IF YOU 2103 01:18:45,371 --> 01:18:47,941 AS THE PATIENT ARE FOUND TO HAVE 2104 01:18:47,941 --> 01:18:50,543 ONE OF THESE VARIANTS ALL OF 2105 01:18:50,543 --> 01:18:52,679 YOUR FIRST DEGREE RELATIVES ARE 2106 01:18:52,679 --> 01:18:54,914 AT 50% RISK TO SHARE THAT WITH 2107 01:18:54,914 --> 01:18:57,250 YOU AND PRESUMABLY THAT RISK 2108 01:18:57,250 --> 01:18:58,751 STATUS AND THAT'S FOR A 2109 01:18:58,751 --> 01:19:01,788 TREATABLE OR PREVENTABLE DISEASE 2110 01:19:01,788 --> 01:19:04,357 FOR WHICH POTENTIALLY LIFE 2111 01:19:04,357 --> 01:19:05,325 SAVING TREATMENT IS AVAILABLE 2112 01:19:05,325 --> 01:19:08,628 AND AGAIN I THINK THIS IS AN 2113 01:19:08,628 --> 01:19:10,096 AREA WHERE WE REALLY NEED TO 2114 01:19:10,096 --> 01:19:14,100 THINK ABOUT IS THIS REALLY 2115 01:19:14,100 --> 01:19:15,735 SECONDARY? WHEN WE ARE IN -- 2116 01:19:15,735 --> 01:19:19,806 WHEN THE ACMG LIST AND THE ACMG 2117 01:19:19,806 --> 01:19:20,840 GUIDELINES WERE WRITTEN FOR 2118 01:19:20,840 --> 01:19:22,175 CLINICAL LABORATORIES WHEN 2119 01:19:22,175 --> 01:19:23,209 THERE'S SOMEONE ORDERING THE 2120 01:19:23,209 --> 01:19:24,978 TEST FOR A CLINICAL REASON AND 2121 01:19:24,978 --> 01:19:26,880 THERE'S AN INTERPRETING 2122 01:19:26,880 --> 01:19:28,948 LABORATORY WHOSE MAIN EXPERTISE 2123 01:19:28,948 --> 01:19:32,418 IS TRYING TO UNDERSTAND GENETIC 2124 01:19:32,418 --> 01:19:35,288 ETIOLOGIES OF SPECIFIC CLINICAL 2125 01:19:35,288 --> 01:19:36,689 ENTITIES IN RESEARCH. YOU KNOW, 2126 01:19:36,689 --> 01:19:38,925 THE ORDERING CLINICIAN IS MAYBE 2127 01:19:38,925 --> 01:19:41,394 NOT GOING TO BE A GENETICIST AND 2128 01:19:41,394 --> 01:19:44,564 THEY MAY NOT REALLY BE ORDERING, 2129 01:19:44,564 --> 01:19:47,734 YOU KNOW, A GENOME INTERROGATION 2130 01:19:47,734 --> 01:19:48,968 TEST FOR THE SAME REASONS THAT 2131 01:19:48,968 --> 01:19:50,169 SOMEONE IN THE CLINICAL WORLD 2132 01:19:50,169 --> 01:19:52,405 MIGHT BE. SO THIS IS JUST A 2133 01:19:52,405 --> 01:19:53,473 COUPLE OF CAVEATS TO KIND OF 2134 01:19:53,473 --> 01:19:55,742 THINK ABOUT AND KICK AROUND. 2135 01:19:55,742 --> 01:19:58,378 BUT, YOU KNOW, IF THINGS GO 2136 01:19:58,378 --> 01:20:00,380 ACCORDING TO PLAN, IDEALLY WHAT 2137 01:20:00,380 --> 01:20:03,683 WE WOULD SEE IS A SECONDARY 2138 01:20:03,683 --> 01:20:05,118 FINDINGS PARADIGM WHERE THIS 2139 01:20:05,118 --> 01:20:07,654 FINDING IS DISCLOSED AND 2140 01:20:07,654 --> 01:20:10,623 RECOMMENDATIONS ARE MADE TO THE 2141 01:20:10,623 --> 01:20:13,126 RECIPIENT. AND THERE ARE TWO 2142 01:20:13,126 --> 01:20:13,793 MAJOR RECOMMENDATIONS THAT OUGHT 2143 01:20:13,793 --> 01:20:16,963 TO BE MADE TO PEOPLE WHO ARE IN 2144 01:20:16,963 --> 01:20:18,164 THIS POSITION. THE POINTER 2145 01:20:18,164 --> 01:20:19,532 DOESN'T WORK. THAT'S RIGHT. I 2146 01:20:19,532 --> 01:20:22,268 WONDER IF -- BUT THIS DOES, 2147 01:20:22,268 --> 01:20:24,337 RIGHT? YOU GUYS CAN SEE THIS? 2148 01:20:24,337 --> 01:20:26,239 GREAT. SO THE FIRST THING IS 2149 01:20:26,239 --> 01:20:28,942 THAT THE PERSON SHOULD UNDERGO 2150 01:20:28,942 --> 01:20:31,544 SOME DISEASE SPECIFIC 2151 01:20:31,544 --> 01:20:32,178 EVALUATIONS. BECAUSE NOW THEY 2152 01:20:32,178 --> 01:20:34,647 KNOW THAT THEY HAVE A GENETIC 2153 01:20:34,647 --> 01:20:36,282 RISK FACTOR AND SO THEY SHOULD 2154 01:20:36,282 --> 01:20:40,353 MEET WITH AN EXPERT TO YOU KNOW, 2155 01:20:40,353 --> 01:20:41,955 BEGIN SURVEILLANCE OR, YOU KNOW, 2156 01:20:41,955 --> 01:20:44,157 SEE IF THEY ALREADY HAVE SIGNS 2157 01:20:44,157 --> 01:20:45,592 OF THIS DISEASE. BECAUSE THEY 2158 01:20:45,592 --> 01:20:48,294 HAVE THIS RISK FACTOR. AND OF 2159 01:20:48,294 --> 01:20:50,563 COURSE THE HOPE THERE WOULD BE 2160 01:20:50,563 --> 01:20:52,365 THAT IF THEY ARE FOUND TO HAVE 2161 01:20:52,365 --> 01:20:55,902 FEATURES, THEY, YOU KNOW, COULD 2162 01:20:55,902 --> 01:20:59,105 ENGAGE IN EARLIER DIAGNOSIS OR 2163 01:20:59,105 --> 01:21:00,540 PREVENTION OR TREATMENT BUT IF 2164 01:21:00,540 --> 01:21:01,774 THEY DON'T THEY COULD 2165 01:21:01,774 --> 01:21:03,743 PARTICIPATE THIS THE KIND OF 2166 01:21:03,743 --> 01:21:05,178 ONGOING SURVEILLANCE THAT WOULD 2167 01:21:05,178 --> 01:21:06,212 ALLOW INTERVENTION AT A TIME 2168 01:21:06,212 --> 01:21:08,581 WHEN IT IS MOST LIKELY TO HAVE 2169 01:21:08,581 --> 01:21:10,617 THE BEST OUTCOME. BUT THEN THIS 2170 01:21:10,617 --> 01:21:11,951 GETS TO THE SECOND 2171 01:21:11,951 --> 01:21:13,119 RECOMMENDATION. WHAT I 2172 01:21:13,119 --> 01:21:13,786 MENTIONED ABOUT THESE GENES THAT 2173 01:21:13,786 --> 01:21:15,488 ARE ON THIS LIST IS THAT THEY'RE 2174 01:21:15,488 --> 01:21:17,624 DOMINANT. SO, AGAIN, IF ANY 2175 01:21:17,624 --> 01:21:19,392 PERSON IS FOUND TO HAVE ONE OF 2176 01:21:19,392 --> 01:21:22,762 THESE FINDINGS, AN IMPORTANT 2177 01:21:22,762 --> 01:21:23,730 SECONDARY BENEFIT MIGHT BE TO 2178 01:21:23,730 --> 01:21:26,032 FAMILY MEMBERS. AND SO THE 2179 01:21:26,032 --> 01:21:27,533 SECOND GENERAL RECOMMENDATION 2180 01:21:27,533 --> 01:21:28,668 THAT PEOPLE ARE GIVEN IS TO TELL 2181 01:21:28,668 --> 01:21:32,939 PEOPLE IN YOUR FAMILY ABOUT THIS 2182 01:21:32,939 --> 01:21:34,941 VARIANT. NOT ONLY WOULD IT -- 2183 01:21:34,941 --> 01:21:36,743 COULD IT BE, KNEW IT'S NOT 2184 01:21:36,743 --> 01:21:39,012 MOVING, SIT MOVING NOW? MAYBE 2185 01:21:39,012 --> 01:21:41,214 IT DOESN'T MATTER. 2186 01:21:41,214 --> 01:21:42,915 SO NOT ONLY SHOULD YOU SHARE 2187 01:21:42,915 --> 01:21:43,983 THIS INFORMATION WITH YOUR 2188 01:21:43,983 --> 01:21:45,518 FAMILY SO THAT THEY CAN GET 2189 01:21:45,518 --> 01:21:48,554 TESTED, WE CALL THAT CASCADE 2190 01:21:48,554 --> 01:21:50,323 TESTING IS WHEN YOU HAVE GENETIC 2191 01:21:50,323 --> 01:21:52,925 TESTING TO SEE IF YOU HAVE A 2192 01:21:52,925 --> 01:21:55,428 KNOWN FAMILIAL VARIANT AND IF 2193 01:21:55,428 --> 01:21:56,729 YOU'RE POSITIVE YOU CAN ENTER 2194 01:21:56,729 --> 01:21:57,897 THIS VIRTUOUS CYCLE OF, YOU 2195 01:21:57,897 --> 01:21:59,732 KNOW, INCREASING YOUR 2196 01:21:59,732 --> 01:22:01,000 SURVEILLANCE THAT COULD 2197 01:22:01,000 --> 01:22:03,102 POTENTIALLY SAVE YOUR LIFE BUT 2198 01:22:03,102 --> 01:22:04,270 ALSO, OFTENTIMES, YOU KNOW, 2199 01:22:04,270 --> 01:22:08,374 THESE ARE FINDINGS THAT PEOPLE 2200 01:22:08,374 --> 01:22:10,176 ARE NOT NECESSARILY EXPECTING 2201 01:22:10,176 --> 01:22:11,944 AND YOU CAN BETTER INTERPRET THE 2202 01:22:11,944 --> 01:22:14,247 CLINICAL MEANING OF THE FINDING 2203 01:22:14,247 --> 01:22:16,582 IF YOU UNDERSTAND MORE ABOUT THE 2204 01:22:16,582 --> 01:22:18,985 FAMILY AS WELL. YOU KNOW, SO I 2205 01:22:18,985 --> 01:22:20,753 THINK IT'S IMPORTANT TO THINK 2206 01:22:20,753 --> 01:22:22,021 THAT, YOU KNOW, THIS IS KIND OF 2207 01:22:22,021 --> 01:22:26,092 HOW WE HOPE THINGS GO. AND WHAT 2208 01:22:26,092 --> 01:22:27,593 WE DID A COUPLE YEARS AGO WAS 2209 01:22:27,593 --> 01:22:29,328 TURN TO THE LITERATURE TO SEE 2210 01:22:29,328 --> 01:22:31,397 KIND OF WHAT IS THE EVIDENCE 2211 01:22:31,397 --> 01:22:33,533 BASE FOR ANY OF THE THINGS THAT 2212 01:22:33,533 --> 01:22:35,902 I JUST MENTIONED. AND SO WE DID 2213 01:22:35,902 --> 01:22:40,039 A SYSTEMATIC REVIEW WHERE WE 2214 01:22:40,039 --> 01:22:41,340 LOOKED IN THE LITERATURE WHERE 2215 01:22:41,340 --> 01:22:44,010 THE UNIT OF ANALYSIS WAS 2216 01:22:44,010 --> 01:22:46,345 INDIVIDUAL RECIPIENTS OF 2217 01:22:46,345 --> 01:22:48,848 SECONDARY FINDINGS ON THE ACMG 2218 01:22:48,848 --> 01:22:50,817 LIST. AND SO WE WERE ONLY ABLE 2219 01:22:50,817 --> 01:22:55,154 TO FIND ABOUT 700 REPORTS OF 2220 01:22:55,154 --> 01:22:56,756 THESE KINDS OF FINDINGS BEING 2221 01:22:56,756 --> 01:22:57,724 RETURNED TO PEOPLE AND THAT WAS 2222 01:22:57,724 --> 01:22:59,792 A BIT SURPRISING TO ME BECAUSE, 2223 01:22:59,792 --> 01:23:01,828 YOU KNOW, THE FIRST ITERATION OF 2224 01:23:01,828 --> 01:23:04,664 THIS LIST WAS PUBLISHED IN 2013. 2225 01:23:04,664 --> 01:23:09,302 AND SO LCALMOST TEN YEARS AFTER 2226 01:23:09,302 --> 01:23:10,636 THE LIST WAS PUBLISHED WE STILL 2227 01:23:10,636 --> 01:23:12,105 DIDN'T FIND A TON OF REPORTS 2228 01:23:12,105 --> 01:23:14,540 ABOUT THIS BUT WE LOOKED AT WHAT 2229 01:23:14,540 --> 01:23:16,175 IS KNOWN IN THE LITERATURE ABOUT 2230 01:23:16,175 --> 01:23:17,844 HOW THESE FINDINGS ARE RETURNED 2231 01:23:17,844 --> 01:23:21,547 AND WHAT OUTCOMES HAPPEN AFTER 2232 01:23:21,547 --> 01:23:23,716 RECEIPT. AND I THINK THE ONE 2233 01:23:23,716 --> 01:23:25,017 IMPORTANT FINDING THAT STOOD OUT 2234 01:23:25,017 --> 01:23:30,256 TO US IMMEDIATELY WAS THAT 97% 2235 01:23:30,256 --> 01:23:31,390 OF THESE REPORTS WERE 2236 01:23:31,390 --> 01:23:32,892 PARTICIPANTS IN RESEARCH STUDIES 2237 01:23:32,892 --> 01:23:34,861 SO REALLY A TINY FRACTION ARE 2238 01:23:34,861 --> 01:23:37,029 PEOPLE WHO ARE GETTING THESE 2239 01:23:37,029 --> 01:23:39,098 KINDS OF RESULTS IN A CLINICAL 2240 01:23:39,098 --> 01:23:41,501 WAY MEANING THE WAY THE LIST WAS 2241 01:23:41,501 --> 01:23:44,604 INTENDED TO BE OPERATIONALIZED. 2242 01:23:44,604 --> 01:23:46,305 THAT'S -- HAS INTERESTING 2243 01:23:46,305 --> 01:23:47,607 IMPLICATIONS WHEN WE THINK ABOUT 2244 01:23:47,607 --> 01:23:50,076 MAYBE LIKE POPULATION SCREENING. 2245 01:23:50,076 --> 01:23:51,310 AND KIND OF CLINICAL EFFORTS BUT 2246 01:23:51,310 --> 01:23:53,713 IT'S GOOD FOR US HERE BECAUSE 2247 01:23:53,713 --> 01:23:55,314 MOST OF THESE PEOPLE ARE 2248 01:23:55,314 --> 01:23:56,015 RESEARCH PARTICIPANTS AND THAT'S 2249 01:23:56,015 --> 01:23:57,884 WHAT WE'RE TALKING ABOUT IS 2250 01:23:57,884 --> 01:23:59,318 RETURNING THESE RESULT TO 2251 01:23:59,318 --> 01:24:02,455 RESEARCH PARTICIPANTS. THERE'S 2252 01:24:02,455 --> 01:24:04,724 BEEN A LOT OF HAND WAVING ABOUT 2253 01:24:04,724 --> 01:24:06,459 WHAT DO PEOPLE DO? WHAT ARE 2254 01:24:06,459 --> 01:24:10,062 ADVERSE PSYCHOLOGICAL OUTCOMES 2255 01:24:10,062 --> 01:24:10,730 WHEN PEOPLE LEARN THIS 2256 01:24:10,730 --> 01:24:15,168 INFORMATION AND WE FOUND AN 2257 01:24:15,168 --> 01:24:17,336 ARRAY IN STUDIES THAT EVALUATED 2258 01:24:17,336 --> 01:24:18,404 HOW PEOPLE APPROACH THESE 2259 01:24:18,404 --> 01:24:21,741 RESULTS FROM AN EMOTIONAL 2260 01:24:21,741 --> 01:24:23,309 PERSPECTIVE, PEOPLE WILL SAY 2261 01:24:23,309 --> 01:24:26,078 THINGS LIKE THEY WERE SURPRISE, 2262 01:24:26,078 --> 01:24:28,314 RELIEVED, SAD, BUT HARDLY ANYONE 2263 01:24:28,314 --> 01:24:30,583 SAYS THEY REGRET THEIR CHOICE TO 2264 01:24:30,583 --> 01:24:31,717 LEARN THIS INFORMATION. I THINK 2265 01:24:31,717 --> 01:24:34,220 THIS DOVETAILS WITH THE RIGHT 2266 01:24:34,220 --> 01:24:36,389 NOT TO KNOW. WHEN GIVEN THIS 2267 01:24:36,389 --> 01:24:38,391 OPTION, VERY, VERY FEW PEOPLE 2268 01:24:38,391 --> 01:24:40,626 WILL SAY THAT THEY REGRET 2269 01:24:40,626 --> 01:24:41,994 LEARNING THIS INFORMATION. WHEN 2270 01:24:41,994 --> 01:24:45,464 WE FOLLOW PEOPLE OVER TIME, 2271 01:24:45,464 --> 01:24:47,800 LEVELS OF DEPRESSION AND ANXIETY 2272 01:24:47,800 --> 01:24:49,869 FROM BEFORE TO RESULTS 2273 01:24:49,869 --> 01:24:53,039 DISCLOSURE TO AFTER RESULTS 2274 01:24:53,039 --> 01:24:54,106 DISCLOSURE REMAIN UNCHANGED 2275 01:24:54,106 --> 01:24:55,741 ALTHOUGH THERE'S NOT A TON OF 2276 01:24:55,741 --> 01:24:57,410 DATA ON THIS AND SOME PEOPLE 2277 01:24:57,410 --> 01:24:59,345 EVEN FORGET THAT THEY'VE -- THAT 2278 01:24:59,345 --> 01:25:01,848 THESE DATA HAVE BEEN SHARED WITH 2279 01:25:01,848 --> 01:25:03,716 THEM. AND I'VE EXPERIENCED THAT 2280 01:25:03,716 --> 01:25:07,386 PERSONALLY. HIGH NUMBERS OF 2281 01:25:07,386 --> 01:25:08,821 PEOPLE REPORT SHARING THEIR 2282 01:25:08,821 --> 01:25:11,290 RESULTS WITH THEIR FAMILY. 2283 01:25:11,290 --> 01:25:13,659 ESPECIALLY TO CLOSE RELATIVES 2284 01:25:13,659 --> 01:25:16,662 AND WE ALSO SAW THAT DISCLOSURE 2285 01:25:16,662 --> 01:25:21,133 TO PRIMARY CARE DOCTORS AND THEN 2286 01:25:21,133 --> 01:25:22,101 SPECIALISTS WAS COMMON BUT 2287 01:25:22,101 --> 01:25:23,736 CERTAINLY NOT UNIVERSAL. AND I 2288 01:25:23,736 --> 01:25:26,205 THINK THIS IS AN IMPORTANT POINT 2289 01:25:26,205 --> 01:25:27,974 WHEN WE THINK ABOUT, AGAIN, THAT 2290 01:25:27,974 --> 01:25:29,842 PARADIGM AND I WILL COME BACK TO 2291 01:25:29,842 --> 01:25:35,281 THAT IN A MINUTE. WE LOOKED FOR 2292 01:25:35,281 --> 01:25:37,183 PRECISION MEDICINE SURVEILLANCE 2293 01:25:37,183 --> 01:25:38,184 OUTCOMES AND WHAT I MEAN BY THAT 2294 01:25:38,184 --> 01:25:41,487 IS, YOU KNOW, MOST OF US WILL 2295 01:25:41,487 --> 01:25:44,190 UNDERGO SCREENING TESTS BASED ON 2296 01:25:44,190 --> 01:25:44,957 ATTRIBUTES THAT HAVE NOTHING TO 2297 01:25:44,957 --> 01:25:47,093 DO WITH OUR DNA, RIGHT? YOU'RE 2298 01:25:47,093 --> 01:25:49,929 A WOMAN OVER 40, YOU HAVE 2299 01:25:49,929 --> 01:25:51,330 MAMMOGRAMS, YOU'RE A MAN OVER 50 2300 01:25:51,330 --> 01:25:55,735 YOU GET YOUR PSA TESTED RIGHT? 2301 01:25:55,735 --> 01:25:58,537 A PRECISION MEDICINE APPROACH IS 2302 01:25:58,537 --> 01:26:02,842 YOU'RE A WOMAN OVER 40 AND YOU 2303 01:26:02,842 --> 01:26:04,777 HAVE A VARIANT IN YOUR GENE THAT 2304 01:26:04,777 --> 01:26:07,713 PUTS YOU AT A HIGHER RISK FOR 2305 01:26:07,713 --> 01:26:09,882 OVARIAN CANCER SO ADHERENCE 2306 01:26:09,882 --> 01:26:11,317 ACROSS THE RANGE OF STUDY WHERE 2307 01:26:11,317 --> 01:26:14,353 IS ADHERENCE WAS EXAMINED WAS 2308 01:26:14,353 --> 01:26:16,822 GENERALLY PRETTY GOOD. AND 2309 01:26:16,822 --> 01:26:18,524 PEOPLE DID REFER PEOPLE TO, YOU 2310 01:26:18,524 --> 01:26:20,359 KNOW, SPECIALISTS, MANY PEOPLE 2311 01:26:20,359 --> 01:26:21,427 WERE FOLLOWED BY SPECIALISTS 2312 01:26:21,427 --> 01:26:23,396 AFTER THEY RECEIVED THEIR 2313 01:26:23,396 --> 01:26:27,166 RESULTS. AND IN STUDIES WHERE 2314 01:26:27,166 --> 01:26:30,236 COST WAS EXAMINED, THE COSTS 2315 01:26:30,236 --> 01:26:31,404 WERE LOWER THAN EXPECTED, AND 2316 01:26:31,404 --> 01:26:33,039 AGAIN, IF YOU LOOK ACROSS THIS 2317 01:26:33,039 --> 01:26:34,607 BODY OF LITERATURE AND I WILL 2318 01:26:34,607 --> 01:26:37,009 PUT A FEW CASES IN IN A MINUTE 2319 01:26:37,009 --> 01:26:40,446 YOU CAN FIND REPORTS OF LIFE 2320 01:26:40,446 --> 01:26:41,113 SAVING TREATMENT AFTER PEOPLE 2321 01:26:41,113 --> 01:26:42,381 LEARN THIS KIND OF INFORMATION. 2322 01:26:42,381 --> 01:26:43,749 THIS COULD INCLUDE, YOU KNOW, 2323 01:26:43,749 --> 01:26:46,319 NOT TAKING MEDICINES THAT 2324 01:26:46,319 --> 01:26:49,388 AVOID -- THAT INCREASE YOUR QT 2325 01:26:49,388 --> 01:26:52,725 INTERVAL. IT HAS TO DO WITH 2326 01:26:52,725 --> 01:26:56,162 YOUR HEART RATE AND RHYTHM. 2327 01:26:56,162 --> 01:27:00,366 TARGETED THERAPY FOR HYPER KOE 2328 01:27:00,366 --> 01:27:03,869 LEST TEAR ROW LIAM YA. AND 2329 01:27:03,869 --> 01:27:06,172 PROPHYLACTIC SURGERIES WHICH WE 2330 01:27:06,172 --> 01:27:07,540 KNOW REDUCE CAN SIR RISK. 2331 01:27:07,540 --> 01:27:10,576 IF WE OVERLAY OUR FINDINGS TO 2332 01:27:10,576 --> 01:27:12,812 THIS IDEAL PARADIGM THE BLUE 2333 01:27:12,812 --> 01:27:14,747 CIRCLES HERE ARE PROPORTIONATE 2334 01:27:14,747 --> 01:27:17,350 TO THE NUMBER OF CASES WHERE 2335 01:27:17,350 --> 01:27:19,719 THERE'S DATA TO SUPPORT A 2336 01:27:19,719 --> 01:27:20,920 DIFFERENT -- DIFFERENT PARTS OF 2337 01:27:20,920 --> 01:27:22,455 THIS PROCESS AND I THINK WHAT 2338 01:27:22,455 --> 01:27:24,657 YOU WILL NOTICE IMMEDIATELY IS 2339 01:27:24,657 --> 01:27:26,058 THAT THE PROPORTION OF DATA THAT 2340 01:27:26,058 --> 01:27:28,060 ARE IN THE LITERATURE ABOUT HOW 2341 01:27:28,060 --> 01:27:31,097 WE DO THIS AND WHAT WE SHOULD 2342 01:27:31,097 --> 01:27:33,399 TELL PEOPLE IS QUITE -- IS VERY 2343 01:27:33,399 --> 01:27:34,934 LARGE COMPARED TO, AGAIN, 2344 01:27:34,934 --> 01:27:37,703 OUTCOME DATA. AND WHEN WE THINK 2345 01:27:37,703 --> 01:27:39,739 ABOUT OUTCOME DATA SPECIFICALLY 2346 01:27:39,739 --> 01:27:41,507 THERE STILL IS NOT A TON OF DATA 2347 01:27:41,507 --> 01:27:43,976 IN THE LITERATURE ABOUT WHAT ARE 2348 01:27:43,976 --> 01:27:45,711 THE SPECIFIC HEALTH OUTCOMES, 2349 01:27:45,711 --> 01:27:47,713 ARE WE REALLY MOVING THE NEEDLE 2350 01:27:47,713 --> 01:27:49,115 ON PEOPLE'S HEALTH? AND ANOTHER 2351 01:27:49,115 --> 01:27:51,650 WAY TO THINK ABOUT THIS IS WHAT 2352 01:27:51,650 --> 01:27:53,219 IS THE CLINICAL UTILITY OF 2353 01:27:53,219 --> 01:27:53,853 SHARING THIS KIND OF INFORMATION 2354 01:27:53,853 --> 01:27:55,721 WITH PEOPLE? SO, AGAIN, THERE 2355 01:27:55,721 --> 01:27:56,922 ARE REPORTS IN THE LITERATURE 2356 01:27:56,922 --> 01:27:58,090 I'M GOING TO GIVE SOME CASE 2357 01:27:58,090 --> 01:28:01,327 EXAMPLES BUT THIS IS REALLY AN 2358 01:28:01,327 --> 01:28:03,662 OPPORTUNITY WHERE WE CAN IMPROVE 2359 01:28:03,662 --> 01:28:05,264 THE KNOWLEDGE BASE ABOUT WHAT 2360 01:28:05,264 --> 01:28:07,166 HAPPENS TO PEOPLE AFTER THEY 2361 01:28:07,166 --> 01:28:08,401 LEARN THIS KIND OF INFORMATION. 2362 01:28:08,401 --> 01:28:10,403 AND SO I AM GOING TO WRAP UP BY 2363 01:28:10,403 --> 01:28:11,137 TALKING ABOUT A COUPLE OF 2364 01:28:11,137 --> 01:28:13,739 DIFFERENT THINGS THAT WE DO HERE 2365 01:28:13,739 --> 01:28:15,875 AT NIH. WHILE ALSO 2366 01:28:15,875 --> 01:28:16,709 ACKNOWLEDGING THAT THERE ARE 2367 01:28:16,709 --> 01:28:18,911 LOTS OF OTHER GROUPS WHO ARE 2368 01:28:18,911 --> 01:28:20,312 WORKING ON DEVELOPING THESE BEST 2369 01:28:20,312 --> 01:28:22,882 PRACTICES FOR RETURN OF RESULTS 2370 01:28:22,882 --> 01:28:24,517 AND OUTCOMES RESEARCH, EMERGE 2371 01:28:24,517 --> 01:28:27,887 AND ALL OF US AND THE GUY SINGER 2372 01:28:27,887 --> 01:28:30,189 MY CODE INITIATIVE ARE THINGS 2373 01:28:30,189 --> 01:28:30,856 THAT COME TO MIND. 2374 01:28:30,856 --> 01:28:32,958 AND WE'RE LEARNING MORE AND MORE 2375 01:28:32,958 --> 01:28:34,360 DATA ABOUT ADHERENCE AND WHETHER 2376 01:28:34,360 --> 01:28:36,762 OR NOT PEOPLE ARE SHARING THIS 2377 01:28:36,762 --> 01:28:39,231 INFORMATION AND WHAT ARE THE 2378 01:28:39,231 --> 01:28:40,032 MOST EFFICIENT WAY TO SHARE 2379 01:28:40,032 --> 01:28:41,333 INFORMATION ACROSS HEALTH CARE 2380 01:28:41,333 --> 01:28:42,435 SYSTEMS MIGHT BE. BUT I'M GOING 2381 01:28:42,435 --> 01:28:44,236 TO TALK A LITTLE BIT ABOUT TWO 2382 01:28:44,236 --> 01:28:45,771 DIFFERENT PROGRAMS ONE -- AND OF 2383 01:28:45,771 --> 01:28:46,806 COURSE IT'S THE FEDERAL 2384 01:28:46,806 --> 01:28:47,740 GOVERNMENT SO WE HAVE ACRONYMS 2385 01:28:47,740 --> 01:28:51,077 FOR BOTH OF THEM. GSRP IS THE 2386 01:28:51,077 --> 01:28:52,511 GENOMIC SERVICES RESEARCH 2387 01:28:52,511 --> 01:28:55,681 PROGRAM AND SGFS IS OUR 2388 01:28:55,681 --> 01:28:56,248 SECONDARY GENOMICS FINDING 2389 01:28:56,248 --> 01:28:58,684 SERVICE I WILL START WITH GSRP 2390 01:28:58,684 --> 01:29:00,586 AND THIS IS A STUDY THAT'S 2391 01:29:00,586 --> 01:29:01,854 CURRENTLY UNDERWAY SPECIFICALLY 2392 01:29:01,854 --> 01:29:03,122 FOR PEOPLE WHO HAVE RECEIVED 2393 01:29:03,122 --> 01:29:03,923 SECONDARY FINDINGS. 2394 01:29:03,923 --> 01:29:06,225 SO WE ARE, YOU KNOW, ACTIVELY 2395 01:29:06,225 --> 01:29:08,227 RECRUITING PEOPLE FOR THIS 2396 01:29:08,227 --> 01:29:09,495 STUDY. WE HAVE ABOUT 300 PEOPLE 2397 01:29:09,495 --> 01:29:11,897 ENROLLED SO FAR. AND SO WE ARE 2398 01:29:11,897 --> 01:29:15,301 BROADLY RECRUITING PEOPLE ACROSS 2399 01:29:15,301 --> 01:29:17,203 MANY DIFFERENT RECRUITMENT 2400 01:29:17,203 --> 01:29:19,138 MECHANISMS TO ASCERTAIN 2401 01:29:19,138 --> 01:29:19,939 SECONDARY FINDINGS RECIPIENTS 2402 01:29:19,939 --> 01:29:22,575 AND WE'RE EVALUATING ADHERENCE 2403 01:29:22,575 --> 01:29:27,713 TO MEDICAL RECOMMEND -- 2404 01:29:27,713 --> 01:29:29,115 RECOMMENDATIONS AND 2405 01:29:29,115 --> 01:29:29,648 COMMUNICATIONS OUTCOMES. 2406 01:29:29,648 --> 01:29:31,917 WE DO QUITE A BIT OF GENOTYPING 2407 01:29:31,917 --> 01:29:34,587 OF PEOPLE IN THE FAMILY. WE 2408 01:29:34,587 --> 01:29:36,755 WILL OFFER CASCADE TESTING TO 2409 01:29:36,755 --> 01:29:38,457 RELATIVES AND THAT IS BECAUSE WE 2410 01:29:38,457 --> 01:29:39,758 WANT TO REALLY UNDERSTAND THE 2411 01:29:39,758 --> 01:29:41,360 PREVALENCE OF THE PHENOTYPE 2412 01:29:41,360 --> 01:29:43,629 THAT'S ASSOCIATED WITH THE 2413 01:29:43,629 --> 01:29:45,097 VARIANT. ANOTHER WAY OF 2414 01:29:45,097 --> 01:29:47,333 THINKING ABOUT THAT IS YOUR 2415 01:29:47,333 --> 01:29:48,501 GENES SAY YOU SHOULD HAVE FILL 2416 01:29:48,501 --> 01:29:50,736 IN THE BLANK CONDITION. WHAT DO 2417 01:29:50,736 --> 01:29:52,438 YOU ACTUALLY HAVE? AND I THINK 2418 01:29:52,438 --> 01:29:54,773 THIS IS IMPORTANT FROM KIND OF A 2419 01:29:54,773 --> 01:29:56,575 POPULATION GENETICS PERSPECTIVE 2420 01:29:56,575 --> 01:29:58,644 BECAUSE ALTHOUGH THE RISKS THAT 2421 01:29:58,644 --> 01:30:00,312 WE QUOTE TO PEOPLE WHEN WE 2422 01:30:00,312 --> 01:30:01,647 RETURN THESE KINDS OF FINDINGS 2423 01:30:01,647 --> 01:30:03,949 TO THEM COME FROM A SELECTED 2424 01:30:03,949 --> 01:30:06,652 POPULATION. RIGHT? SO WE KNOW 2425 01:30:06,652 --> 01:30:08,521 THAT THE RISK TO DEVELOP OVARIAN 2426 01:30:08,521 --> 01:30:12,124 CANCER, IF YOU HAVE A BRCA 2 2427 01:30:12,124 --> 01:30:14,994 VARIANT IS 45% ACROSS THE 2428 01:30:14,994 --> 01:30:17,329 LIFETIME THAT DATA POINT COMES 2429 01:30:17,329 --> 01:30:19,732 FROM YEARS AND YEARS OF STUDY OF 2430 01:30:19,732 --> 01:30:21,901 PEOPLE WHO HAVE HEREDITARY 2431 01:30:21,901 --> 01:30:24,203 BREAST AND OVARIAN CANCER SO 2432 01:30:24,203 --> 01:30:25,204 THERE'S A SELECTION BIAS HERE 2433 01:30:25,204 --> 01:30:28,207 AND SO IT'S REALLY IMPORTANT TO 2434 01:30:28,207 --> 01:30:29,241 UNDERSTAND, YOU KNOW, WHAT MIGHT 2435 01:30:29,241 --> 01:30:31,710 BE THE ACTUAL, WHAT'S THE ACTUAL 2436 01:30:31,710 --> 01:30:33,045 PREVALENCE OF DISEASE IN PEOPLE 2437 01:30:33,045 --> 01:30:34,947 WHO GET THIS KIND OF 2438 01:30:34,947 --> 01:30:36,615 INFORMATION? SO I A COUPLE 2439 01:30:36,615 --> 01:30:37,516 CASES TO SHARE WITH YOU OF 2440 01:30:37,516 --> 01:30:39,919 PEOPLE THAT WE HAVE SEEN HERE AT 2441 01:30:39,919 --> 01:30:43,756 THE NIH THIS IS A PED AGREE, I 2442 01:30:43,756 --> 01:30:46,458 DON'T KNOW PEOPLE HAVE SEEN A 2443 01:30:46,458 --> 01:30:47,726 DIAGRAM LIKE THIS BUT SQUARES 2444 01:30:47,726 --> 01:30:49,929 ARE MEN AND CIRCLES ARE WOMEN 2445 01:30:49,929 --> 01:30:51,797 AND PROBAND, THAT'S THE WORD WE 2446 01:30:51,797 --> 01:30:53,532 USE IN GENETICS FOR THE FIRST 2447 01:30:53,532 --> 01:30:55,434 PERSON THAT COME TO CLINICAL 2448 01:30:55,434 --> 01:30:58,837 ATTENTION IS A 43-YEAR-OLD WOMAN 2449 01:30:58,837 --> 01:31:01,974 WHO LEARNED ABOUT A PATHOGENIC 2450 01:31:01,974 --> 01:31:07,980 VARIANT AND THIS VARIANT IS 2451 01:31:07,980 --> 01:31:10,516 ASSOCIATED WITH IF A FILIAL 2452 01:31:10,516 --> 01:31:11,350 HYPER CHOLESTEROL EEM YA AND SHE 2453 01:31:11,350 --> 01:31:13,686 FOUND OUT ABOUT THIS BECAUSE 2454 01:31:13,686 --> 01:31:16,455 SHED A ANCESTRY TESTING THAT SHE 2455 01:31:16,455 --> 01:31:16,889 BOUGHT. 2456 01:31:16,889 --> 01:31:18,757 MANY OF THESE COMPANIES WILL PUT 2457 01:31:18,757 --> 01:31:21,527 THEIR OFFERINGS ON SALE AROUND 2458 01:31:21,527 --> 01:31:22,127 THANKSGIVING AND THAT'S WHAT 2459 01:31:22,127 --> 01:31:23,662 HAPPENED TO HER SO YOU CAN 2460 01:31:23,662 --> 01:31:25,731 CHOOSE -- YOU CAN CHECK THE BOX 2461 01:31:25,731 --> 01:31:27,233 FOR DO I WANT TO RECEIVE HEALTH 2462 01:31:27,233 --> 01:31:29,068 DATA IN ADDITION TO KNOWING HOW 2463 01:31:29,068 --> 01:31:30,469 SCOTTISH OR IRISH I AM AND SHE 2464 01:31:30,469 --> 01:31:31,737 WAS LIKE, YEAH, IT'S ON 2465 01:31:31,737 --> 01:31:38,611 SALMONELLA SALE, I WILL ASK FOR 2466 01:31:38,611 --> 01:31:39,445 THAT AND HAVE AND I KNOW IT'S 2467 01:31:39,445 --> 01:31:41,146 REALLY HARD TO READ HERE AND 2468 01:31:41,146 --> 01:31:43,048 WE'LL SEE IF THE CURSOR 2469 01:31:43,048 --> 01:31:43,916 COOPERATES BUT YOU CAN SEE THAT, 2470 01:31:43,916 --> 01:31:45,551 YOU KNOW, I ACTUALLY DON'T THINK 2471 01:31:45,551 --> 01:31:48,153 SHE NEEDED A GENETIC TEST TO 2472 01:31:48,153 --> 01:31:50,256 TELL ME THIS BECAUSE SHE HAS A 2473 01:31:50,256 --> 01:31:52,124 BROTHER WHO HAD HIGH CHOLESTEROL 2474 01:31:52,124 --> 01:31:54,660 AT AGE SEVEN. MANY PATERNAL 2475 01:31:54,660 --> 01:31:57,896 RELATIVES WHO HAVE HAD HEART 2476 01:31:57,896 --> 01:31:59,331 ATTACKS AND BYPASS SURGERY IN 2477 01:31:59,331 --> 01:32:05,070 THEIR 40S AND 5ED 0S AND FOUR 2478 01:32:05,070 --> 01:32:08,107 OF HER SIX CHILDREN WERE ALSO 2479 01:32:08,107 --> 01:32:09,742 REPORTED TO HAVING HIGH 2480 01:32:09,742 --> 01:32:12,378 CHOLESTEROL SO THIS SCREAMS 2481 01:32:12,378 --> 01:32:13,379 HYPER COALESCE ROLL EEM YA TO 2482 01:32:13,379 --> 01:32:13,912 ME. 2483 01:32:13,912 --> 01:32:24,423 BUT WHEN SHE ENROLLED SHE -- 2484 01:32:25,958 --> 01:32:27,459 THIS HAD NOT BEEN ASCERTAINED 2485 01:32:27,459 --> 01:32:28,794 AND WE BROUGHT HERE HER TO THE 2486 01:32:28,794 --> 01:32:30,729 NIH AND THIS IS A GREAT EXAMPLE 2487 01:32:30,729 --> 01:32:32,598 OF HOW SHARING THIS INFORMATION 2488 01:32:32,598 --> 01:32:34,533 WITH PEOPLE AND, AGAIN, WE DID A 2489 01:32:34,533 --> 01:32:36,335 LOT FOR THIS PERSON. BECAUSE ON 2490 01:32:36,335 --> 01:32:37,569 OUR PROTOCOL WE HAVE THE ABILITY 2491 01:32:37,569 --> 01:32:40,839 TO BRING THEM TO NIH FOR 2492 01:32:40,839 --> 01:32:41,874 PHENOTYPING BUT A HOME CLINICIAN 2493 01:32:41,874 --> 01:32:43,709 COULD HAVE DONE THIS TOO. 2494 01:32:43,709 --> 01:32:45,778 GENOMIC ASCERTAINMENT CAN 2495 01:32:45,778 --> 01:32:46,979 OVERCOME BARRIER TO CLINICAL 2496 01:32:46,979 --> 01:32:49,348 CARE AND SO THIS IS A CT SCANNER 2497 01:32:49,348 --> 01:32:51,517 FOR HEART AND SHE HAD THE 2498 01:32:51,517 --> 01:32:53,285 CORONARY ARTERIES OF A WOMAN IN 2499 01:32:53,285 --> 01:32:54,753 HER UPPER 70S. 2500 01:32:54,753 --> 01:32:58,290 SO SHE HAD SOME EVIDENCE OF 2501 01:32:58,290 --> 01:32:59,725 CORONARY ARTERY CALCIFICATION 2502 01:32:59,725 --> 01:33:02,895 ALREADY AND WE STARTED TWO OF 2503 01:33:02,895 --> 01:33:03,862 HER FOUR CHILDREN ON TREATMENT 2504 01:33:03,862 --> 01:33:05,397 FOR HIGH CHOLESTEROL AND 2505 01:33:05,397 --> 01:33:07,599 HOPEFULLY THAT WILL LOWER THEIR 2506 01:33:07,599 --> 01:33:09,201 RISKS OF CORONARY ARTERY 2507 01:33:09,201 --> 01:33:10,703 DISEASE. SO, AGAIN, I THINK 2508 01:33:10,703 --> 01:33:12,838 THIS IS JUST A CONCRETE EXAMPLE 2509 01:33:12,838 --> 01:33:16,875 OF HOW THIS CAN MOVE THE NEEDLE 2510 01:33:16,875 --> 01:33:18,177 FOR PEOPLE BECAUSE EVEN THOUGH I 2511 01:33:18,177 --> 01:33:19,878 WOULD ARGUE THAT YOU DIDN'T NEED 2512 01:33:19,878 --> 01:33:22,748 A GENETIC TEST RESULT TO 2513 01:33:22,748 --> 01:33:23,716 RECOGNIZE THIS CLINICAL ENTITY 2514 01:33:23,716 --> 01:33:25,617 IN THIS PARTICULAR FAMILY, IT 2515 01:33:25,617 --> 01:33:28,220 TOOK HAVING THOSE GENOMIC DATA 2516 01:33:28,220 --> 01:33:30,556 TO MAKE THAT RECOGNITION. 2517 01:33:30,556 --> 01:33:31,256 HERE'S ANOTHER PATIENT WHO WE 2518 01:33:31,256 --> 01:33:33,892 HAVE ENROLLED. THIS IS A 2519 01:33:33,892 --> 01:33:35,728 36-YEAR-OLD, WHEN THIS WOMAN, WE 2520 01:33:35,728 --> 01:33:37,529 MET HER WHEN SHE WAS 40 BUT WHEN 2521 01:33:37,529 --> 01:33:39,465 SHE WAS 46 SHE JOINED KIND OF A 2522 01:33:39,465 --> 01:33:42,401 BIOBANK STUDY THAT WAS RUN OUT 2523 01:33:42,401 --> 01:33:46,238 OF A HISTORICALLY BLACK COLLEGE 2524 01:33:46,238 --> 01:33:47,406 AND UNIVERSITY AND SHE WAS 2525 01:33:47,406 --> 01:33:49,441 MOTIVATED BY CURIOSITY BUT ALSO 2526 01:33:49,441 --> 01:33:50,743 DIDN'T KNOW MUCH ABOUT HER DAD'S 2527 01:33:50,743 --> 01:33:53,212 SIDE OF THE FAMILY AND THOUGHT 2528 01:33:53,212 --> 01:33:54,380 IT WAS IMPORTANT FOR MINORITIES 2529 01:33:54,380 --> 01:33:56,048 TO BE REPRESENTED IN GENETIC 2530 01:33:56,048 --> 01:33:56,849 RESEARCH AND THROUGH THAT 2531 01:33:56,849 --> 01:33:59,385 PARTICIPATION IN THAT STUDY SHE 2532 01:33:59,385 --> 01:34:03,355 LEARNED ABOUT A BRCA 2 2533 01:34:03,355 --> 01:34:05,157 PATHOGENIC VARIANT. THIS 2534 01:34:05,157 --> 01:34:07,826 INCREASES YOUR RISK OF BREAST 2535 01:34:07,826 --> 01:34:11,397 AND OVARIAN CANCER. SHE MET 2536 01:34:11,397 --> 01:34:13,632 WITH A COUNSELOR AND DID 2537 01:34:13,632 --> 01:34:14,533 SCREENINGS AND ALSO HER PRIMARY 2538 01:34:14,533 --> 01:34:16,735 CARE PROVIDER RECOGNIZED THIS 2539 01:34:16,735 --> 01:34:18,137 AND URGED HER TO HAVE MAMMOGRAMS 2540 01:34:18,137 --> 01:34:19,772 AND SHE ACTUALLY WAS DIAGNOSED 2541 01:34:19,772 --> 01:34:22,841 WITH BREAST CANCER AT AGE 39 ON 2542 01:34:22,841 --> 01:34:25,544 HER VERY, VERY FIRST MAMMOGRAM. 2543 01:34:25,544 --> 01:34:27,713 BUT HAVING THIS FINDING ALLOWED 2544 01:34:27,713 --> 01:34:30,282 HER TO REALLY MOTIVATED HER TO 2545 01:34:30,282 --> 01:34:31,483 FIND OUT MUCH MORE ABOUT HER 2546 01:34:31,483 --> 01:34:34,386 DAD'S SIDE OF THE FAMILY AND SO 2547 01:34:34,386 --> 01:34:35,521 THROUGH THIS SHE WAS ABLE TO 2548 01:34:35,521 --> 01:34:36,688 RECONNECT WITH FOLKS ON HER 2549 01:34:36,688 --> 01:34:38,390 DAD'S SIDE OF THE FAMILY AND 2550 01:34:38,390 --> 01:34:39,792 LEARNED ABOUT THIS REALLY 2551 01:34:39,792 --> 01:34:41,627 STRIKING HISTORY OF BREAST 2552 01:34:41,627 --> 01:34:43,662 CANCER AND PANCREATIC CANCER 2553 01:34:43,662 --> 01:34:45,864 WHICH IS ALSO ASSOCIATED WITH 2554 01:34:45,864 --> 01:34:47,099 THIS VARIANT ON HER PATERNAL 2555 01:34:47,099 --> 01:34:50,502 SIDE OF THE FAMILY. SO, AGAIN, 2556 01:34:50,502 --> 01:34:52,871 ANOTHER EXAMPLE OF, YOU KNOW, 2557 01:34:52,871 --> 01:34:55,574 SOME OUTCOMES THAT CAN COME FROM 2558 01:34:55,574 --> 01:34:56,508 SHARING THIS INFORMATION WITH 2559 01:34:56,508 --> 01:34:58,310 PEOPLE. BOTH OF THESE FAMILIES 2560 01:34:58,310 --> 01:34:59,845 HAVE BEEN ON DIFFERENT EPISODES 2561 01:34:59,845 --> 01:35:02,281 OF THE PODCAST DNA TODAY SO IF 2562 01:35:02,281 --> 01:35:04,917 YOU'RE INTERESTED YOU CAN FIND 2563 01:35:04,917 --> 01:35:06,084 THEM THERE. AND THEN I'M GOING 2564 01:35:06,084 --> 01:35:09,388 TO WRAP UP JUST BY TALKING ABOUT 2565 01:35:09,388 --> 01:35:11,457 SGFS. WHICH IS AGAIN, THE 2566 01:35:11,457 --> 01:35:12,825 CLINICAL SERVICE THAT BEN ELUDED 2567 01:35:12,825 --> 01:35:18,096 TO THAT REONE -- WE RUN TO HELP 2568 01:35:18,096 --> 01:35:19,698 RETURN THESE FINDINGS TO 2569 01:35:19,698 --> 01:35:20,899 RESEARCH PARTICIPANTS. 2570 01:35:20,899 --> 01:35:24,369 IN 2010 WAS THE FIRST TIME OUR 2571 01:35:24,369 --> 01:35:27,339 GROUP STARTED USING EXOME AND 2572 01:35:27,339 --> 01:35:28,006 GENOME SEQUENCING TO UNDERSTAND 2573 01:35:28,006 --> 01:35:30,042 THE CAUSES OF SOME RARE 2574 01:35:30,042 --> 01:35:31,710 PEDIATRIC ONSET CONDITIONS AND I 2575 01:35:31,710 --> 01:35:33,345 REALLY REMEMBER AT THE TIME 2576 01:35:33,345 --> 01:35:37,649 WRITING THE CONSENT FORM. FOR 2577 01:35:37,649 --> 01:35:40,919 THAT STUDY. AND REALLY THINKING 2578 01:35:40,919 --> 01:35:42,721 ABOUT -- MY POSITION HAS 2579 01:35:42,721 --> 01:35:43,355 OBVIOUSLY REALLY CHANGED BECAUSE 2580 01:35:43,355 --> 01:35:45,591 I THOUGHT, WELL, WE CAN'T 2581 01:35:45,591 --> 01:35:46,825 POSSIBLY TELL THESE PEOPLE 2582 01:35:46,825 --> 01:35:48,760 ANYTHING OTHER THAN THE CAUSE 2583 01:35:48,760 --> 01:35:49,962 FOR THEIR KID'S CONDITION. 2584 01:35:49,962 --> 01:35:53,232 BECAUSE THAT JUST SEEMS SO -- 2585 01:35:53,232 --> 01:35:55,167 SEEMS LIKE SO MUCH TO BURDEN 2586 01:35:55,167 --> 01:35:56,802 THEM WITH. RIGHT? BUT, AGAIN, 2587 01:35:56,802 --> 01:35:59,171 MY THINKING HAS REALLY, REALLY 2588 01:35:59,171 --> 01:36:00,239 CHANGED HERE. AND I THINK WHAT 2589 01:36:00,239 --> 01:36:02,241 I WILL SAY IS THAT, YOU KNOW, 2590 01:36:02,241 --> 01:36:03,842 THROUGH THINGS LIKE SGFS WHAT 2591 01:36:03,842 --> 01:36:06,678 WE'RE REALLY DOING HERE IS 2592 01:36:06,678 --> 01:36:07,379 OPERATIONALIZING THIS 2593 01:36:07,379 --> 01:36:10,048 INSTITUTIONAL DUTY HERE AT THE 2594 01:36:10,048 --> 01:36:10,916 NIH TO RETURN THESE KINDS OF 2595 01:36:10,916 --> 01:36:13,218 RESULTS AND SO THIS IS A 2596 01:36:13,218 --> 01:36:14,152 CLINICAL SERVICE THAT'S 2597 01:36:14,152 --> 01:36:15,954 AVAILABLE TO INTRAMURAL 2598 01:36:15,954 --> 01:36:17,389 INVESTIGATORS WHERE WE SCREEN 2599 01:36:17,389 --> 01:36:18,624 SEQUENCE DATA THAT'S BEEN 2600 01:36:18,624 --> 01:36:20,726 GENERATED THROUGH A RESEARCH 2601 01:36:20,726 --> 01:36:21,860 PROTOCOL SO WE DON'T SEQUENCE 2602 01:36:21,860 --> 01:36:23,695 THE PEOPLE. THEY SEND US THEIR 2603 01:36:23,695 --> 01:36:26,331 SEQUENCE DATA AND WE LOOK FOR 2604 01:36:26,331 --> 01:36:27,699 THESE FINDINGS AND THEN WE HELP 2605 01:36:27,699 --> 01:36:30,569 RESEARCH TEAMS TO CLINICALLY 2606 01:36:30,569 --> 01:36:31,737 VALIDATE AND RETURN THESE 2607 01:36:31,737 --> 01:36:34,206 FINDINGS TO PEOPLE AND SO I DO 2608 01:36:34,206 --> 01:36:36,074 THIS. SO I PROVIDE GENETIC 2609 01:36:36,074 --> 01:36:37,242 COUNSELING FOR THESE PEOPLE AND 2610 01:36:37,242 --> 01:36:38,944 WE GET A FAMILY AND PERSONAL 2611 01:36:38,944 --> 01:36:42,180 HISTORY AND THEN MAKE A LOCAL 2612 01:36:42,180 --> 01:36:46,084 REFERRAL. AND I THINK AGAIN, 2613 01:36:46,084 --> 01:36:48,186 THE MAJOR QUESTION I GET WHEN 2614 01:36:48,186 --> 01:36:51,723 PEOPLE ARE APPLYING TO USE THIS 2615 01:36:51,723 --> 01:36:54,660 SERVICE IS, WELL, AGAIN, BECAUSE 2616 01:36:54,660 --> 01:36:56,662 THE RECOMMENDATION IS TO DO THIS 2617 01:36:56,662 --> 01:36:57,696 PROSPECTIVELY, HOW SHOULD I 2618 01:36:57,696 --> 01:36:59,164 WRITE THIS CONSENT FORM AND CAN 2619 01:36:59,164 --> 01:37:02,467 YOU GIVE OUR TEAM TRAINING ON 2620 01:37:02,467 --> 01:37:06,038 CONSENT AND CONCEPT -- 2621 01:37:06,038 --> 01:37:07,506 CONSENTING PEOPLE TO THIS IS 2622 01:37:07,506 --> 01:37:08,006 REALLY NOT HARD. 2623 01:37:08,006 --> 01:37:09,374 AGAIN, THINKING ABOUT THE BUILD 2624 01:37:09,374 --> 01:37:10,976 UP TO THIS POINT, MOST PEOPLE 2625 01:37:10,976 --> 01:37:13,645 REALLY WANT THIS INFORMATION, 2626 01:37:13,645 --> 01:37:15,247 MOST PEOPLE THINK THAT GENOMIC 2627 01:37:15,247 --> 01:37:17,049 DATA ARE IMPORTANT. AND I DON'T 2628 01:37:17,049 --> 01:37:18,584 KNOW THAT WE NECESSARILY NEED TO 2629 01:37:18,584 --> 01:37:22,287 THINK ABOUT CONSENTING FOR 2630 01:37:22,287 --> 01:37:24,990 RECEIPT OF GENETIC TEST RESULTS 2631 01:37:24,990 --> 01:37:26,658 THAT ARE DIFFERENT FROM HEALTH 2632 01:37:26,658 --> 01:37:27,726 DATA JUST THINK TO YOURSELF IF 2633 01:37:27,726 --> 01:37:29,361 YOU HAVE EVER HAD A DOCTOR ORDER 2634 01:37:29,361 --> 01:37:32,097 LIKE A LIPID PANEL OR HEPATIC 2635 01:37:32,097 --> 01:37:32,864 PANEL, HAVE THEY EVER SPENT A 2636 01:37:32,864 --> 01:37:34,733 LONG TIME TALKING WITH YOU 2637 01:37:34,733 --> 01:37:35,434 ABOUT, LIKE, SO HERE'S WHAT 2638 01:37:35,434 --> 01:37:37,102 WE'RE GOING FIND AND WE MIGHT 2639 01:37:37,102 --> 01:37:38,737 FIND THIS ALSO. I THINK IT'S 2640 01:37:38,737 --> 01:37:39,972 JUST KIND OF IMPLIED, RIGHT? 2641 01:37:39,972 --> 01:37:42,674 AND SO, TO WRAP UP WHAT I WILL 2642 01:37:42,674 --> 01:37:45,844 SAY HERE IS THAT YOU KNOW THIS 2643 01:37:45,844 --> 01:37:49,615 HAS BEEN, THERE HAVE BEEN SOME 2644 01:37:49,615 --> 01:37:50,382 IMPLEMENTATION CHALLENGES HERE 2645 01:37:50,382 --> 01:37:51,617 AND I THINK THESE ARE IMPORTANT 2646 01:37:51,617 --> 01:37:52,684 THINGS TO THINK ABOUT. THERE 2647 01:37:52,684 --> 01:37:55,354 ARE SOME INDIVIDUAL ATTRIBUTES 2648 01:37:55,354 --> 01:37:56,521 ABOUT PARTICIPANTS THAT CAN MAKE 2649 01:37:56,521 --> 01:37:58,957 THIS PROCESS OF RETURNING 2650 01:37:58,957 --> 01:38:01,627 RESEARCH GENETIC RESULTS 2651 01:38:01,627 --> 01:38:03,128 CHALLENGING. THINGS LIKE THEIR 2652 01:38:03,128 --> 01:38:04,997 AGE OR THEIR WELLNESS THAT THESE 2653 01:38:04,997 --> 01:38:07,499 PEOPLE COME FROM A FRAIL 2654 01:38:07,499 --> 01:38:10,168 POPULATION AND BEN MENTIONED 2655 01:38:10,168 --> 01:38:12,938 THIS EARLIER AND THEN FINDING 2656 01:38:12,938 --> 01:38:15,140 LOCAL REFERRALS FOR RESEARCH 2657 01:38:15,140 --> 01:38:15,807 PARTICIPANTS EVEN IN THE U.S. IS 2658 01:38:15,807 --> 01:38:18,644 NOT EASY. THERE'S NOT A 2659 01:38:18,644 --> 01:38:19,911 CARDIOVASCULAR GENETICIST WITHIN 2660 01:38:19,911 --> 01:38:21,546 A 200 MILE RADIUS OF PEOPLE 2661 01:38:21,546 --> 01:38:24,983 LIVING IN PLACES LIKE IDAHO AND 2662 01:38:24,983 --> 01:38:26,852 NORTH DAKOTA BUT I THINK THE 2663 01:38:26,852 --> 01:38:28,420 MAJOR CONCERN HERE IS RECON 2664 01:38:28,420 --> 01:38:29,454 CONTACTING PEOPLE AND SO, YOU 2665 01:38:29,454 --> 01:38:32,057 KNOW, I THINK THE BIGGEST LESSON 2666 01:38:32,057 --> 01:38:33,859 LEARNED HERE MIGHT BE TO JUST, 2667 01:38:33,859 --> 01:38:35,460 THE WAY YOU CAN MAKE THIS 2668 01:38:35,460 --> 01:38:37,462 MOVE -- GO SMOOTHLY IS TO 2669 01:38:37,462 --> 01:38:38,563 MAINTAIN CONTACT WITH YOUR 2670 01:38:38,563 --> 01:38:39,498 RESEARCH PARTICIPANTS SO YOU'RE 2671 01:38:39,498 --> 01:38:43,101 ABLE TO GET TO THEM LATER IN 2672 01:38:43,101 --> 01:38:45,637 TIME. SO JUST SOME VERY BRIEF 2673 01:38:45,637 --> 01:38:46,938 ANECDOTAL DATA OF WHAT WE FOUND 2674 01:38:46,938 --> 01:38:49,975 IN SGFS, CLINICAL GENETIC 2675 01:38:49,975 --> 01:38:53,845 TESTING I THINK IS UNCOMMON. SO 2676 01:38:53,845 --> 01:38:55,113 ANOTHER BENEFIT OF DOING THIS 2677 01:38:55,113 --> 01:38:58,016 WHOLE THING IS THAT MANY PEOPLE 2678 01:38:58,016 --> 01:39:03,555 LIKE THE FAMILY WITH FAMILIAL 2679 01:39:03,555 --> 01:39:05,624 HYPER COLEST EEM YA HAVE SIGNS 2680 01:39:05,624 --> 01:39:07,993 OF WHAT'S GOING ON AND NOT 2681 01:39:07,993 --> 01:39:10,429 GETTING DIAGNOSTIC TESTING. IF 2682 01:39:10,429 --> 01:39:13,699 WE LOOK ACROSS THE PEOPLE AT 2683 01:39:13,699 --> 01:39:16,468 SGFS, ABOUT 25% REPORT A 2684 01:39:16,468 --> 01:39:17,769 DIAGNOSIS BUT NO GENETIC 2685 01:39:17,769 --> 01:39:19,705 TESTING. IF THEY'VE GOT A 2686 01:39:19,705 --> 01:39:20,605 CLINICAL DIAGNOSIS, MAYBE, YOU 2687 01:39:20,605 --> 01:39:21,940 KNOW, I THINK -- IT'S IMPORTANT 2688 01:39:21,940 --> 01:39:23,675 TO KIND OF HAVE THE MOLECULAR 2689 01:39:23,675 --> 01:39:25,577 BACKGROUND FOR THAT. AND ABOUT 2690 01:39:25,577 --> 01:39:27,746 50% OF PEOPLE WHO WE TALK TO 2691 01:39:27,746 --> 01:39:29,247 REPORT A CONSISTENT PERSONAL OR 2692 01:39:29,247 --> 01:39:30,916 FAMILY HISTORY THAT'S CONSISTENT 2693 01:39:30,916 --> 01:39:32,818 WITH THE VARIANT WITHOUT A 2694 01:39:32,818 --> 01:39:34,653 CLINICAL DIAGNOSIS OR GENETIC 2695 01:39:34,653 --> 01:39:36,388 TESTING SO IN CONCLUSION I THINK 2696 01:39:36,388 --> 01:39:38,523 I'VE -- I HOPE I CONVINCED YOU 2697 01:39:38,523 --> 01:39:41,293 THAT MOST PEOPLE WANT THIS 2698 01:39:41,293 --> 01:39:41,993 INFORMATION. AND THAT 2699 01:39:41,993 --> 01:39:43,095 THERE'S -- THE POTENTIAL FOR 2700 01:39:43,095 --> 01:39:45,497 SOME REALLY GOOD OUTCOMES THAT 2701 01:39:45,497 --> 01:39:46,732 RESULT WHEN WE DO THIS, BUT WE 2702 01:39:46,732 --> 01:39:49,768 NEED TO STUDY THIS MORE. AND, 2703 01:39:49,768 --> 01:39:51,636 AGAIN, I THINK WE DO HAVE THE 2704 01:39:51,636 --> 01:39:53,305 POTENTIAL TO IMPROVE OUTCOMES 2705 01:39:53,305 --> 01:39:55,073 FOR PARTICIPANTS BUT THE 2706 01:39:55,073 --> 01:39:55,741 BIGGEST, AGAIN, LESSON LEARNED 2707 01:39:55,741 --> 01:39:57,743 FOR ME IS THIS REQUIRES ONGOING 2708 01:39:57,743 --> 01:39:59,978 INVESTMENT ON THE PART OF 2709 01:39:59,978 --> 01:40:01,980 INSTITUTIONS. WHO, YOU KNOW R 2710 01:40:01,980 --> 01:40:03,281 THINKING ABOUT THIS 2711 01:40:03,281 --> 01:40:05,016 INSTITUTIONAL DUTY TO DO THIS 2712 01:40:05,016 --> 01:40:06,284 BUT ALSO, YOU KNOW, 2713 01:40:06,284 --> 01:40:08,186 PARTICIPANTS, WE DO PUT A BURDEN 2714 01:40:08,186 --> 01:40:10,222 ON THEM TO FOLLOW UP WITH THE, 2715 01:40:10,222 --> 01:40:13,158 YOU KNOW, RECOMMENDATIONS THAT 2716 01:40:13,158 --> 01:40:14,926 WE MAKE. BUT ALSO ON INDIVIDUAL 2717 01:40:14,926 --> 01:40:16,094 RESEARCHERS TO MAINTAIN CONTACT 2718 01:40:16,094 --> 01:40:17,395 WITH THEIR PARTICIPANTS TO 2719 01:40:17,395 --> 01:40:19,197 FACILITATE THIS BUT, AGAIN, I 2720 01:40:19,197 --> 01:40:21,900 THINK THIS HAS THE POTENTIAL TO 2721 01:40:21,900 --> 01:40:23,468 CLOSE GAPS IN CLINICAL CARE AND 2722 01:40:23,468 --> 01:40:26,238 I THINK WE'RE HIGHLIGHTING SOME 2723 01:40:26,238 --> 01:40:28,607 REAL SYSTEMIC CHALLENGES AND 2724 01:40:28,607 --> 01:40:29,341 ALLEVIATING SOME OF THOSE. A 2725 01:40:29,341 --> 01:40:30,408 LOT OF PEOPLE HAVE CONTRIBUTED 2726 01:40:30,408 --> 01:40:32,144 TO THE WORK I PRESENTED TODAY 2727 01:40:32,144 --> 01:40:33,845 AND I AM VERY GRATEFUL TO THEM 2728 01:40:33,845 --> 01:40:35,447 AND YOU CAN FIND ALL MY 2729 01:40:35,447 --> 01:40:38,016 REFERENCES HERE AND I AM IN THE 2730 01:40:38,016 --> 01:40:38,683 GLOBAL I DON'T HAVE A SLIDE WITH 2731 01:40:38,683 --> 01:40:46,324 MY E-MAIL. GREAT. 2732 01:40:46,324 --> 01:40:47,759 >> HI, EVERYONE, QUESTION TO THE 2733 01:40:47,759 --> 01:40:54,766 MIC PLEASE, I HAVE A QUESTION DO 2734 01:40:54,766 --> 01:40:56,668 YOU HAVE PEOPLE RUNNING TO YOUR 2735 01:40:56,668 --> 01:40:59,704 SERVICE? IT SEEMS THIS IS A 2736 01:40:59,704 --> 01:41:01,773 REAL, YOU KNOW, OPPORTUNITY IF 2737 01:41:01,773 --> 01:41:04,943 I'M AN INVESTIGATOR IN THE 2738 01:41:04,943 --> 01:41:08,780 CLINICAL CENTER AND NOT A 2739 01:41:08,780 --> 01:41:10,348 GENETICIST AND CONNECTING 2740 01:41:10,348 --> 01:41:11,449 INFORMATION IT SEEMS I WOULD 2741 01:41:11,449 --> 01:41:14,386 SEND ALL MY PATIENT TO YOU. 2742 01:41:14,386 --> 01:41:15,353 >> JULIE. THAT'S A GREAT 2743 01:41:15,353 --> 01:41:17,022 QUESTION AND WE'RE NOT THE ONLY 2744 01:41:17,022 --> 01:41:17,856 SERVICE THAT CAN DO SOME OF 2745 01:41:17,856 --> 01:41:21,293 THIS. SO THE NIAD, THE -- THEY 2746 01:41:21,293 --> 01:41:22,794 HAVE A CENTRALIZED SEQUENCING 2747 01:41:22,794 --> 01:41:24,062 CORE AND WILL DO ALL OF THESE 2748 01:41:24,062 --> 01:41:25,864 THINGS IF YOU SEND ALL THE 2749 01:41:25,864 --> 01:41:27,165 THINGS I TALKED ABOUT THEY ARE 2750 01:41:27,165 --> 01:41:28,400 THE ONES WHO SEQUENCE YOUR 2751 01:41:28,400 --> 01:41:31,369 PATIENTS. BUT, YOU KNOW, I 2752 01:41:31,369 --> 01:41:34,172 THINK IT IS NOT AS HEAVILY 2753 01:41:34,172 --> 01:41:36,374 UTILIZED AS I COULD HAVE 2754 01:41:36,374 --> 01:41:38,610 ANTICIPATED. AND I THINK THAT'S 2755 01:41:38,610 --> 01:41:39,778 BECAUSE MANY PEOPLE JUST REALLY 2756 01:41:39,778 --> 01:41:42,848 WISH THIS WASN'T A PROBLEM. I 2757 01:41:42,848 --> 01:41:44,716 JUST -- MANY PEOPLE JUST REALLY 2758 01:41:44,716 --> 01:41:46,318 ARE TRYING TO STRUCTURE 2759 01:41:46,318 --> 01:41:47,752 PROTOCOLS IN SUCH A WAY THAT 2760 01:41:47,752 --> 01:41:50,422 THEY CAN MAKE AN ARGUMENT WHERE 2761 01:41:50,422 --> 01:41:54,492 THEY DON'T HAVE TO DO IT. AND I 2762 01:41:54,492 --> 01:41:58,363 HAVE SOME HYPOTHESES ABOUT THAT 2763 01:41:58,363 --> 01:42:01,233 BUT I THINK -- I MEAN, IT'S 2764 01:42:01,233 --> 01:42:04,536 INCONVENIENT THAT THESE FINDINGS 2765 01:42:04,536 --> 01:42:07,439 EXIST BUT IT CAN BE REALLY 2766 01:42:07,439 --> 01:42:07,906 BENEFICIAL TO PEOPLE. 2767 01:42:07,906 --> 01:42:09,941 >> BUT I WOULD SAY BACK TO THAT 2768 01:42:09,941 --> 01:42:12,344 THAT YOU, RIGHT, YOUR TEAM HAS 2769 01:42:12,344 --> 01:42:13,478 THE INFRASTRUCTURE TO TAKE CARE 2770 01:42:13,478 --> 01:42:16,381 OF IT, RIGHT? SO IF I WAS AN 2771 01:42:16,381 --> 01:42:19,751 INVESTIGATOR AND I DIDN'T HAVE 2772 01:42:19,751 --> 01:42:22,888 THAT RESOURCE I COULD UNDERSTAND 2773 01:42:22,888 --> 01:42:24,723 WHY I WOULD WANT TO AVOID IT. 2774 01:42:24,723 --> 01:42:26,391 >> JULIE: I THINK INFRASTRUCTURE 2775 01:42:26,391 --> 01:42:29,361 IS A HUGE THING. IT IS 2776 01:42:29,361 --> 01:42:29,995 COMPLETELY UNREALISTIC. I MADE 2777 01:42:29,995 --> 01:42:31,730 THE ARGUMENT THAT YOU DO NOT 2778 01:42:31,730 --> 01:42:33,798 NEED ANY SPECIAL EXPERTISE TO 2779 01:42:33,798 --> 01:42:35,333 CONSENT PEOPLE TO THIS IDEA. I 2780 01:42:35,333 --> 01:42:37,535 REALLY THINK A CHATBOT CAN DO 2781 01:42:37,535 --> 01:42:38,670 THIS AND I'M VERY EXCITED BY 2782 01:42:38,670 --> 01:42:41,006 RESEARCH THAT'S EMERGING FOR HOW 2783 01:42:41,006 --> 01:42:45,243 WE CAN MEET THE CONSENT NEEDS 2784 01:42:45,243 --> 01:42:46,778 AND MY MAIN THOUGHT WITH BEN'S 2785 01:42:46,778 --> 01:42:50,582 CASE THAT HE PRESENTED WAS, YOU 2786 01:42:50,582 --> 01:42:52,684 KNOW, HOW CONFIDENT IS THE TEAM 2787 01:42:52,684 --> 01:42:56,087 IN THE ROBUSTNESS OF THE CONSENT 2788 01:42:56,087 --> 01:42:59,224 PROCESS THAT THEY WERE CONFIDENT 2789 01:42:59,224 --> 01:43:00,058 THAT THAT PERSON'S CHOICE WOULD 2790 01:43:00,058 --> 01:43:01,326 BE DURABLE. THAT'S KIND OF A 2791 01:43:01,326 --> 01:43:09,701 BIT OF A TAN JEPT -- TANGENT BUT 2792 01:43:09,701 --> 01:43:11,836 EXPERTISE IS HELPFUL. 2793 01:43:11,836 --> 01:43:16,908 >> I WANT TO FOLLOW UP ON OTHER 2794 01:43:16,908 --> 01:43:17,842 THINGS. I DON'T HAVE QUESTIONS 2795 01:43:17,842 --> 01:43:20,211 YET BUT COME UP TO THE MIC. I 2796 01:43:20,211 --> 01:43:23,915 REALLY LIKED YOUR COMMENT ABOUT 2797 01:43:23,915 --> 01:43:29,387 TICKING THE BOX. -- THERE'S A 2798 01:43:29,387 --> 01:43:34,259 CONTENT FORM. SOMEONE PUT FILLS 2799 01:43:34,259 --> 01:43:35,493 OUT A CONSENT FORM. 2800 01:43:35,493 --> 01:43:39,230 AND YOU HAVE SOME DATA. AND SO 2801 01:43:39,230 --> 01:43:42,367 THIS IS MY GENERAL PITCH TO 2802 01:43:42,367 --> 01:43:44,669 EVERYONE. DON'T USE CONSENT 2803 01:43:44,669 --> 01:43:46,271 FORMS TO COLLECT IMPORTANT 2804 01:43:46,271 --> 01:43:47,739 INFORMATION RELATED TO THE 2805 01:43:47,739 --> 01:43:50,475 IMPLEMENTATION OF YOUR PROTOCOL. 2806 01:43:50,475 --> 01:43:51,543 RIGHT? BECAUSE YOU'RE GOING TO 2807 01:43:51,543 --> 01:43:54,179 END UP IN SITUATIONS WHICH JUST 2808 01:43:54,179 --> 01:43:55,447 SOUNDS LIKE YOU HAD AT LEAST 2809 01:43:55,447 --> 01:43:57,449 ONCE WHERE SOMEONE TICKED THE 2810 01:43:57,449 --> 01:44:00,652 BOX, NO, I DON'T WANT IT AND THE 2811 01:44:00,652 --> 01:44:02,487 DATA GOT TO YOU AND YOU HAVE THE 2812 01:44:02,487 --> 01:44:03,588 PARTICIPANT IN FRONT OF YOU, NOW 2813 01:44:03,588 --> 01:44:07,359 WHAT DO I DO? SO JUST A PITCH, 2814 01:44:07,359 --> 01:44:08,927 YOU KNOW, I KNOW THAT'S CONTRARY 2815 01:44:08,927 --> 01:44:11,730 TO OUR CURRENT BOILERPLATE BUT, 2816 01:44:11,730 --> 01:44:13,064 OR MAKE SURE YOU'RE COLLECTING 2817 01:44:13,064 --> 01:44:16,434 IT ELSEWHERE. NOT JUST ON -- 2818 01:44:16,434 --> 01:44:18,136 >> JULIE: AND THE COROLLARY TO 2819 01:44:18,136 --> 01:44:21,139 THAT IS PLEASE LET US KNOW IF 2820 01:44:21,139 --> 01:44:25,110 YOU MOVE. MROOET PLEASE KEEP US 2821 01:44:25,110 --> 01:44:26,611 POSTED ABOUT YOUR HEALTH CARE. 2822 01:44:26,611 --> 01:44:28,380 IF YOU REALLY WANT TO KNOW 2823 01:44:28,380 --> 01:44:30,148 YOU'VE GOT TO TALK TO PEOPLE 2824 01:44:30,148 --> 01:44:31,249 ONCE A YEAR. AT LEAST. SEND 2825 01:44:31,249 --> 01:44:33,785 THEM A HOLIDAY CARD. THERE'S 2826 01:44:33,785 --> 01:44:34,886 LOTS OF WAYS TO DO THIS. 2827 01:44:34,886 --> 01:44:35,787 >> GREAT. ONE QUICK QUESTION 2828 01:44:35,787 --> 01:44:38,556 AND I WILL GET TO BRITTANY JUST 2829 01:44:38,556 --> 01:44:46,097 TO CLARIFY FOR ALL OF -- SO THE 2830 01:44:46,097 --> 01:44:47,532 QUESTION FROM SARA IS FOR 2831 01:44:47,532 --> 01:44:49,067 CLINICAL TESTING IS CONSENT 2832 01:44:49,067 --> 01:44:50,435 REQUIRED PRIOR TO TESTING BEING 2833 01:44:50,435 --> 01:44:51,736 DONE. WE'VE BEEN TALKING ABOUT 2834 01:44:51,736 --> 01:44:53,538 IT IN THE RESEARCH SETTING IN 2835 01:44:53,538 --> 01:44:55,940 THE CLINICAL SETTING -- 2836 01:44:55,940 --> 01:44:59,577 >> JULIE: ABSOLUTELY. EVERY 2837 01:44:59,577 --> 01:45:01,980 LABORATORY IS GOING TO HAVE A 2838 01:45:01,980 --> 01:45:04,649 CONSENT FORM IN THEIR CONSENT 2839 01:45:04,649 --> 01:45:06,484 FORM THEY'RE GOING TO REQUIRE 2840 01:45:06,484 --> 01:45:09,087 THE CLINICAL PERSON TO CHECK THE 2841 01:45:09,087 --> 01:45:10,255 BOX ABOUT WHETHER OR NOT THEY 2842 01:45:10,255 --> 01:45:16,227 WANT SECONDARY FINDINGS AND IT 2843 01:45:16,227 --> 01:45:18,763 GETS TRANSMITTED ALONG WITH THE 2844 01:45:18,763 --> 01:45:19,597 SAMPLE. 2845 01:45:19,597 --> 01:45:20,465 >> AUDIENCE: I WAS WONDERING IF 2846 01:45:20,465 --> 01:45:22,700 PEOPLE MIGHT NOT WANT SECONDARY 2847 01:45:22,700 --> 01:45:23,835 FINDINGS BECAUSE IT'S JUST TOO 2848 01:45:23,835 --> 01:45:26,438 ABSTRACT AT THAT TIME. SO IF I 2849 01:45:26,438 --> 01:45:28,573 WAS ASKED LIKE DO YOU WANT SOME 2850 01:45:28,573 --> 01:45:29,541 GENETIC INFORMATION THAT WE 2851 01:45:29,541 --> 01:45:31,209 MIGHT FIND I'D PROBABLY BE LIKE 2852 01:45:31,209 --> 01:45:32,710 I DON'T THINK SO BUT THEN IF IT 2853 01:45:32,710 --> 01:45:35,980 WAS THE CASE OF SOMEBODY WHO HAS 2854 01:45:35,980 --> 01:45:39,017 THAT, WHAT WAS IT COLORECTAL 2855 01:45:39,017 --> 01:45:40,085 CANCER INDICATOR AND IT'S LIKE 2856 01:45:40,085 --> 01:45:41,586 THIS IS SOMETHING THAT COULD 2857 01:45:41,586 --> 01:45:43,755 KILL YOU UNLESS YOU KNOW THIS, 2858 01:45:43,755 --> 01:45:47,158 WOULD THERE BE A WAY TO REACH 2859 01:45:47,158 --> 01:45:49,661 OUT TO THEM AND SAY WE FOUND 2860 01:45:49,661 --> 01:45:50,762 SOMETHING AND WE KNOW YOU DIDN'T 2861 01:45:50,762 --> 01:45:52,263 WANT INFORMATION BUT THIS MIGHT 2862 01:45:52,263 --> 01:45:53,231 SAVE YOUR LIFE. 2863 01:45:53,231 --> 01:45:55,100 >> JULIE: I THINK THAT'S THE 2864 01:45:55,100 --> 01:45:56,034 LYNCHPIN OF THE CONSENT PROCESS 2865 01:45:56,034 --> 01:45:58,736 WHERE, AGAIN, I KNOW I USED THE 2866 01:45:58,736 --> 01:46:02,273 EXAMPLE OF HAS YOUR DOCTOR SAT 2867 01:46:02,273 --> 01:46:03,608 DOWN AND SAID ON YOUR LIPID 2868 01:46:03,608 --> 01:46:07,145 PANEL I SEE YOUR HDL AND HERE IS 2869 01:46:07,145 --> 01:46:11,549 WHAT I MIND FIND. NO. WHEN WE 2870 01:46:11,549 --> 01:46:14,018 CONSENT FOR THIS IT DOES NOT 2871 01:46:14,018 --> 01:46:17,188 MEAN COMPLICATED. WE SAY WE 2872 01:46:17,188 --> 01:46:20,024 WILL DO SOME SEQUENCING AND 2873 01:46:20,024 --> 01:46:21,126 SOMETIMES WE FIND OUT A 2874 01:46:21,126 --> 01:46:22,894 PREDECISION POSITION TO A 2875 01:46:22,894 --> 01:46:23,995 TREATABLE DISZ DISEASE WHEN WE 2876 01:46:23,995 --> 01:46:28,766 FIND SOMETHING LIKE THAT IT 2877 01:46:28,766 --> 01:46:30,168 MAKES US UNCOMFORTABLE TO KNOW 2878 01:46:30,168 --> 01:46:31,136 THAT ABOUT YOU AND NOT SHARE IT 2879 01:46:31,136 --> 01:46:32,537 WITH YOU. 2880 01:46:32,537 --> 01:46:33,972 IF WE FIND SOMETHING THAT YOU'RE 2881 01:46:33,972 --> 01:46:35,373 AT AN INCREASED RISK FOR 2882 01:46:35,373 --> 01:46:37,108 SOMETHING TREATABLE OR 2883 01:46:37,108 --> 01:46:38,143 PREVENTABLE WE WILL SHARE THAT 2884 01:46:38,143 --> 01:46:40,411 WITH YOU, WHAT DO YOU THINK? 2885 01:46:40,411 --> 01:46:41,980 RIGHT? SO I THINK IT HAS TO BE 2886 01:46:41,980 --> 01:46:43,281 CONCRETE AND EXAMPLES AND I 2887 01:46:43,281 --> 01:46:46,751 THINK, AGAIN, I OFTEN GIVE 2888 01:46:46,751 --> 01:46:49,320 EXAMPLES OF HYPER KOE LEST RAL 2889 01:46:49,320 --> 01:46:51,656 EEM YA OR HEART DISEASE OR 2890 01:46:51,656 --> 01:46:53,024 CANCER AS OPPOSED TO ALZHEIMER'S 2891 01:46:53,024 --> 01:46:55,426 DISEASE, PARKINSON'S DISEASE. I 2892 01:46:55,426 --> 01:46:57,962 THINK YOU'RE RIGHT, I, YEAH, 2893 01:46:57,962 --> 01:46:59,297 THERE'S CERTAINLY CONTEXTUAL 2894 01:46:59,297 --> 01:47:01,099 ELEMENT TO THIS FOR SURE. 2895 01:47:01,099 --> 01:47:02,800 >> AND I THINK IT KIND OF BRINGS 2896 01:47:02,800 --> 01:47:05,170 US BACK TO DANIEL'S COMMENT 2897 01:47:05,170 --> 01:47:08,640 EARLIER ABOUT, YOU KNOW, THE 2898 01:47:08,640 --> 01:47:15,747 SORT OF ONE DAY WE MIGHT ALL 2899 01:47:15,747 --> 01:47:18,716 WANT OF THIS INFORMATION 2900 01:47:18,716 --> 01:47:20,285 REGARDLESS IF IT'S A 2901 01:47:20,285 --> 01:47:23,321 PREDISPOSITION OR AN AUTOSOMAL 2902 01:47:23,321 --> 01:47:23,888 DOMINANT OR NO TREATMENT 2903 01:47:23,888 --> 01:47:27,759 AVAILABLE. WE CHANGED OUR MINDS 2904 01:47:27,759 --> 01:47:29,427 BEFORE AND WE MIGHT CHANGE OUR 2905 01:47:29,427 --> 01:47:31,329 MINDS, YOU KNOW, AGAIN. 2906 01:47:31,329 --> 01:47:32,964 >> JULIE: ABSOLUTELY WHICH IS 2907 01:47:32,964 --> 01:47:34,399 WHERE I THINK OUTCOME RESEARCH 2908 01:47:34,399 --> 01:47:35,733 IS SO IMPORTANT BECAUSE WE FIND 2909 01:47:35,733 --> 01:47:36,901 THAT JUST BECAUSE YOU TELL 2910 01:47:36,901 --> 01:47:39,170 PEOPLE THIS AND I DIDN'T REALLY 2911 01:47:39,170 --> 01:47:40,772 GET INTO IT THAT MUCH BUT JUST 2912 01:47:40,772 --> 01:47:43,308 BECAUSE YOU TELL THEM DOESN'T 2913 01:47:43,308 --> 01:47:45,410 MEAN THEY ACTUALLY -- IT SAVES 2914 01:47:45,410 --> 01:47:47,745 THEIR LIVES THERE'S SO MANY 2915 01:47:47,745 --> 01:47:48,012 BARRIERS. 2916 01:47:48,012 --> 01:47:50,982 >> RIGHT. AND, EXACTLY. 2917 01:47:50,982 --> 01:47:53,017 >> JULIE: BUT THAT'S LIKE OTHER 2918 01:47:53,017 --> 01:47:55,320 HEALTH CARE DATA. EVERY SMOKER 2919 01:47:55,320 --> 01:47:58,623 HAS BEEN TOLD BY EVERY DOCTOR TO 2920 01:47:58,623 --> 01:47:59,490 QUIT SMOKING. SO -- 2921 01:47:59,490 --> 01:48:02,827 >> SO THIS IS A REALLY IMPORTANT 2922 01:48:02,827 --> 01:48:08,366 QUESTION. WHAT IS ACMG FINDINGS 2923 01:48:08,366 --> 01:48:08,800 MEAN? 2924 01:48:08,800 --> 01:48:14,439 >> JULIE. I AM SO GLAD THEY 2925 01:48:14,439 --> 01:48:16,541 ASKED -- IT IS SUCH A WORD SALAD 2926 01:48:16,541 --> 01:48:20,511 WHAT ON EARTH ARE WE TALKING 2927 01:48:20,511 --> 01:48:22,513 ABOUT. THE AMERICAN COLLEGE OF 2928 01:48:22,513 --> 01:48:23,815 AMERICAN GENETICS AND GENOMICS 2929 01:48:23,815 --> 01:48:27,118 IT'S THE ACCREDITING BODY FOR 2930 01:48:27,118 --> 01:48:29,153 GENOMIC PROFESSIONALS IN THE 2931 01:48:29,153 --> 01:48:31,089 U.S. 2932 01:48:31,089 --> 01:48:38,162 AND THE LIST IS A SET OF GENE 2933 01:48:38,162 --> 01:48:39,897 WHERE IS THIS BODY HAS SAID IF 2934 01:48:39,897 --> 01:48:42,033 YOU FIND A PATHOGENIC AND THAT 2935 01:48:42,033 --> 01:48:43,868 MEANS DISEASE CAUSING VARIANT, 2936 01:48:43,868 --> 01:48:46,537 IN ONE OF THESE GENES, YOU 2937 01:48:46,537 --> 01:48:49,107 SHOULD TELL SOMEONE ABOUT THAT. 2938 01:48:49,107 --> 01:48:50,275 BECAUSE IT HAS THESE ATTRIBUTES 2939 01:48:50,275 --> 01:48:51,709 THAT WE'VE BEEN TALKING ABOUT. 2940 01:48:51,709 --> 01:48:55,747 THAT IT'S TREATABLE, IT'S 2941 01:48:55,747 --> 01:48:56,447 PREVENTABLE. THE DISEASE, AND 2942 01:48:56,447 --> 01:48:57,949 IMPORTANTLY, WE KNOW A LOT ABOUT 2943 01:48:57,949 --> 01:49:01,919 THE GENETICS OF THAT CONDITION. 2944 01:49:01,919 --> 01:49:03,755 RIGHT? SO THESE AREN'T 2945 01:49:03,755 --> 01:49:04,522 HYPOTHETICAL, YOU KNOW, MAYBE 2946 01:49:04,522 --> 01:49:06,858 THERE'S AN ASSOCIATION BETWEEN 2947 01:49:06,858 --> 01:49:08,893 THIS VARIANT AND, YOU KNOW, 2948 01:49:08,893 --> 01:49:10,461 GLUTEN INSENSITIVITY. YOU KNOW, 2949 01:49:10,461 --> 01:49:12,897 THERE'S REALLY ROCK SOLID 2950 01:49:12,897 --> 01:49:15,600 EVIDENCE TO SUGGEST THAT IF YOU 2951 01:49:15,600 --> 01:49:18,636 HAVE THIS VARIANT, YOU COULD, IT 2952 01:49:18,636 --> 01:49:21,639 COULD SAVE YOUR LIFE TO DO 2953 01:49:21,639 --> 01:49:24,509 SOMETHING ABOUT IT, BASICALLY. 2954 01:49:24,509 --> 01:49:26,477 >> I WILL POST A LINK TO THE 2955 01:49:26,477 --> 01:49:29,213 ACMG AND THE MOST RECENT 2956 01:49:29,213 --> 01:49:32,383 PUBLICATION SO FOLKS WHO WANT TO 2957 01:49:32,383 --> 01:49:35,353 LEARN MORE CAN DO SO. THANK 2958 01:49:35,353 --> 01:49:37,322 YOU, NICE TO HAVE YOU AND SHARE 2959 01:49:37,322 --> 01:49:41,059 YOUR KNOWLEDGE. WE EVER AT -- 2960 01:49:41,059 --> 01:49:42,627 WE ARE AT THE TIME OF OUR BREAK 2961 01:49:42,627 --> 01:49:46,230 SO PLEASE RETURN AT 10:35 WHERE 2962 01:49:46,230 --> 01:49:49,834 AS I MENTIONED WE WILL BE JOINED 2963 01:49:49,834 --> 01:49:52,303 BY KATRINA WHO WILL TALK ABOUT 2964 01:49:52,303 --> 01:49:53,571 CONDUCTING RESEARCH WITH 2965 01:49:53,571 --> 01:49:55,273 INDIGENOUS COMMUNITIES. SO SEE 2966 01:49:55,273 --> 01:50:05,717 YOU BACK SOON. (BREAK). 2967 01:50:14,133 --> 01:50:17,236 FOCUSES ON PERSONALIZING 2968 01:50:17,236 --> 01:50:21,707 MEDICINE, PHARMCO YESACOGENOMIC 2969 01:50:21,707 --> 01:50:25,444 THE ETHICAL IMBRING OCCASION OF 2970 01:50:25,444 --> 01:50:27,112 GENOMIC RESEARCH OF THE 2971 01:50:27,112 --> 01:50:27,680 INDIGENOUS DMIENS. 2972 01:50:27,680 --> 01:50:29,548 SO WITH THAT, I'M GOING TO HAND 2973 01:50:29,548 --> 01:50:38,324 IT OTHER TO YOU DR. CLAW. IT'S 2974 01:50:38,324 --> 01:50:40,993 ALL YOURS. 2975 01:50:40,993 --> 01:50:42,328 >> HI, THERE, THANK YOU VERY 2976 01:50:42,328 --> 01:50:44,697 MUCH, CAN EVERYONE HEAR ME OKAY? 2977 01:50:44,697 --> 01:50:47,633 >> WE CAN, WE CAN'T SEE THE 2978 01:50:47,633 --> 01:50:49,468 SLIDES. CAN YOU SHARE THEM. 2979 01:50:49,468 --> 01:50:53,005 >> I WILL. ON MY END I HEARD A 2980 01:50:53,005 --> 01:50:54,373 LITTLE BIT OF BREAKING UP SO IF 2981 01:50:54,373 --> 01:50:57,743 I BREAK UP JUST SEND ME A CHAT 2982 01:50:57,743 --> 01:51:00,279 AND I WILL TRY TO PAUSE. BUT 2983 01:51:00,279 --> 01:51:01,447 GREAT, DOES EVERYONE SEE MY 2984 01:51:01,447 --> 01:51:01,680 SLIDES? 2985 01:51:01,680 --> 01:51:02,481 >> WE DO. 2986 01:51:02,481 --> 01:51:04,984 >> OKAY, GREAT. WELL THANK YOU 2987 01:51:04,984 --> 01:51:07,653 SO MUCH FOR THAT INTRODUCTION, 2988 01:51:07,653 --> 01:51:12,691 HOLLY. AND HI, EVERYONE. (IN 2989 01:51:12,691 --> 01:51:14,093 DIALECT). THANK YOU SO MUCH FOR 2990 01:51:14,093 --> 01:51:17,262 INVITING ME, THIS IS ALWAYS A 2991 01:51:17,262 --> 01:51:20,232 FUN TIME OF THE YEAR WHEN I GET 2992 01:51:20,232 --> 01:51:23,369 TO THE NIH AND FOLKS TAKING THIS 2993 01:51:23,369 --> 01:51:27,106 COURSE. SO I WANTED TO START 2994 01:51:27,106 --> 01:51:30,275 OFF BY ACKNOWLEDGING THE 2995 01:51:30,275 --> 01:51:31,443 TRADITIONAL HOMELANDS OF WHERE I 2996 01:51:31,443 --> 01:51:35,014 DO MY RESEARCH AT THE UNIVERSITY 2997 01:51:35,014 --> 01:51:38,951 OF -- OR, UNIVERSITY OF 2998 01:51:38,951 --> 01:51:40,853 COLORADO. WE ALSO HAVE A 2999 01:51:40,853 --> 01:51:43,656 DOWNTOWN CAMPUS SHOWN HERE BUT 3000 01:51:43,656 --> 01:51:46,425 THESE ARE THE TRADITIONAL 3001 01:51:46,425 --> 01:51:50,729 HOMELANDS OF THE APACHE, 3002 01:51:50,729 --> 01:51:53,699 COMANCHE AND ALSO HOME TO MANY 3003 01:51:53,699 --> 01:51:55,834 OTHER INDIGENOUS PEOPLES TODAY. 3004 01:51:55,834 --> 01:51:59,071 SO TODAY I HOPE TO RELAY THE 3005 01:51:59,071 --> 01:52:01,674 IMPORTANCE OF THINKING ABOUT 3006 01:52:01,674 --> 01:52:04,910 DIVERSITY, EQUITY AND EQUALITY 3007 01:52:04,910 --> 01:52:07,146 AND HEALTH CARE RESEARCH AND 3008 01:52:07,146 --> 01:52:09,248 HEALTH RESEARCH AND WHY IT'S 3009 01:52:09,248 --> 01:52:12,885 IMPERATIVE TO ENGAGE COMMUNITIES 3010 01:52:12,885 --> 01:52:14,553 IN YOUR RESEARCH. FIRST OFF, I 3011 01:52:14,553 --> 01:52:17,790 WILL CONTEXTUALIZE MY 3012 01:52:17,790 --> 01:52:19,191 EXPERIENCES WITH SOME OF THE -- 3013 01:52:19,191 --> 01:52:23,762 MY JOURNEY IN ACADEMIA AND 3014 01:52:23,762 --> 01:52:27,132 MOTIVATIONS FOR DOING THE WORK 3015 01:52:27,132 --> 01:52:33,038 THAT I DO, AS WELL HOW I'M 3016 01:52:33,038 --> 01:52:36,575 MOVING TOWARDS COMMUNITY BASED 3017 01:52:36,575 --> 01:52:38,577 RESEARCH IN MY WORK. SO TO 3018 01:52:38,577 --> 01:52:42,548 START OFF, I GREW UP ON THE 3019 01:52:42,548 --> 01:52:43,682 NAVAJO NATION WHICH IS SHOWN 3020 01:52:43,682 --> 01:52:47,086 HERE IN THE MIDDLE OF THE FOUR 3021 01:52:47,086 --> 01:52:49,655 CORNERS OF -- SO THE NAVAJO 3022 01:52:49,655 --> 01:52:53,392 NATION SPANS ACROSS ARIZONA, NEW 3023 01:52:53,392 --> 01:52:55,627 MEXICO AND UTAH WE HAVE ALMOST 3024 01:52:55,627 --> 01:52:58,597 500,000 ENROLLED MEMBERS IN THE 3025 01:52:58,597 --> 01:53:00,866 NAVAJO TRIBE AND IT'S THE 3026 01:53:00,866 --> 01:53:02,468 LARGEST TRIBAL LAND BASE AS 3027 01:53:02,468 --> 01:53:06,905 WELL. SO THIS BLACK BLOB HERE 3028 01:53:06,905 --> 01:53:09,775 IS ABOUT THE SIZE OF WEST 3029 01:53:09,775 --> 01:53:14,079 VIRGINIA. SO I GREW UP HERE AND 3030 01:53:14,079 --> 01:53:15,614 WENT TO HIGH SCHOOL HERE AND ALL 3031 01:53:15,614 --> 01:53:19,218 OF MY FAMILY STILL LIVE ON THE 3032 01:53:19,218 --> 01:53:20,986 NAVAJO NATION. BUT I ALSO DID 3033 01:53:20,986 --> 01:53:23,589 MY POSTDOC AND MY PH.D. AT 3034 01:53:23,589 --> 01:53:25,457 UNIVERSITY OF WASHINGTON. SO I 3035 01:53:25,457 --> 01:53:28,527 SPENT QUITE A FEW YEARS THERE AS 3036 01:53:28,527 --> 01:53:30,095 I GOT MY PH.D. IN GENOME 3037 01:53:30,095 --> 01:53:33,298 SCIENCES AND THEN I DID A 3038 01:53:33,298 --> 01:53:36,201 POSTDOC WITH THE NORTHWEST 3039 01:53:36,201 --> 01:53:38,370 ALASKA PHARMACOGENOMICS RESEARCH 3040 01:53:38,370 --> 01:53:41,740 NETWORK IN WHICH I HAD ADVISORS 3041 01:53:41,740 --> 01:53:43,242 BOTH IN PHARMACEUTICS AND 3042 01:53:43,242 --> 01:53:45,511 BIOETHICS BUT WHAT WAS REALLY 3043 01:53:45,511 --> 01:53:48,480 GREAT ABOUT THE NWAPGRN IS THEY 3044 01:53:48,480 --> 01:53:50,682 HAD A REALLY DIVERSE TEAM BUT 3045 01:53:50,682 --> 01:53:53,418 THEY WORKED WITH TRIBAL 3046 01:53:53,418 --> 01:53:56,088 COMMUNITIES AND WERE AT ITS CORE 3047 01:53:56,088 --> 01:53:57,222 THEY WERE TRYING TO DO COMMUNITY 3048 01:53:57,222 --> 01:53:58,223 ENGAGED RESEARCH AS WELL AS 3049 01:53:58,223 --> 01:54:01,293 THINKING ABOUT THE ETHICAL AND 3050 01:54:01,293 --> 01:54:02,261 SOCIAL IMPLICATIONS OF THAT 3051 01:54:02,261 --> 01:54:05,631 RESEARCH IN THOSE COMMUNITIES. 3052 01:54:05,631 --> 01:54:08,834 SO IN 2019, I MOVED BACK TO MY 3053 01:54:08,834 --> 01:54:10,636 BELOVED SOUTHWEST AND STARTED MY 3054 01:54:10,636 --> 01:54:13,105 OWN RESEARCH PROGRAM AT THE 3055 01:54:13,105 --> 01:54:15,107 UNIVERSITY OF COLORADO. SO I 3056 01:54:15,107 --> 01:54:16,408 HAVE ALWAYS WANTED TO WORK WITH 3057 01:54:16,408 --> 01:54:18,744 MY OWN TRIBE AND OTHER 3058 01:54:18,744 --> 01:54:21,780 INDIGENOUS PEOPLES AND IT'S ALSO 3059 01:54:21,780 --> 01:54:23,916 AN IDEAL FOR MANY NATIVE ELDERS 3060 01:54:23,916 --> 01:54:25,684 AND FAMILIES. THEY ALWAYS TELL 3061 01:54:25,684 --> 01:54:27,586 YOU GO AND GET YOUR EDUCATION 3062 01:54:27,586 --> 01:54:30,222 AND THEN COME BACK AND HELP YOUR 3063 01:54:30,222 --> 01:54:32,791 PEOPLE. SO I HOPE THAT THE WORK 3064 01:54:32,791 --> 01:54:35,360 THAT I'M DOING NOW IS AFFECTING 3065 01:54:35,360 --> 01:54:37,196 SOME OF THE WORK THAT I DO WITH 3066 01:54:37,196 --> 01:54:39,731 MY OWN COMMUNITY AS WELL AS 3067 01:54:39,731 --> 01:54:42,968 OTHER TRIBAL NATIONS. BUT, 3068 01:54:42,968 --> 01:54:46,238 GROWING UP I DID NOT KNOW WHAT 3069 01:54:46,238 --> 01:54:47,306 RESEARCH WAS. AND IT WASN'T 3070 01:54:47,306 --> 01:54:48,640 UNTIL I CONDUCTED MY OWN 3071 01:54:48,640 --> 01:54:50,409 RESEARCH IN HIGH SCHOOL THAT I 3072 01:54:50,409 --> 01:54:52,544 REALIZED WHAT IT WAS AND HOW FAR 3073 01:54:52,544 --> 01:54:57,249 IT COULD TAKE ME IN MY CAREER. 3074 01:54:57,249 --> 01:54:58,550 AND IT WASN'T UNTIL I WAS 3075 01:54:58,550 --> 01:54:59,751 PROBABLY A LATE UNDERGRADUATE 3076 01:54:59,751 --> 01:55:01,320 WHEN I REALIZED THIS COULD BE A 3077 01:55:01,320 --> 01:55:04,389 CAREER FOR ME. BUT IT WAS 3078 01:55:04,389 --> 01:55:06,291 REALLY BECAUSE OF THE 3079 01:55:06,291 --> 01:55:07,693 INFLUENTIAL ATTENTIVE AND 3080 01:55:07,693 --> 01:55:10,295 SUPPORTIVE MENTORS AND COMMUNITY 3081 01:55:10,295 --> 01:55:12,364 AND FAMILY AND MANY DIVERSITY 3082 01:55:12,364 --> 01:55:14,066 PROGRAMS THAT I WAS A PART OF IS 3083 01:55:14,066 --> 01:55:17,769 THAT IS WHY I'M HERE TODAY AND 3084 01:55:17,769 --> 01:55:19,638 SOME OF THESE MENTORS WERE 3085 01:55:19,638 --> 01:55:23,742 SCIENTISTS BUT ALSO OTHERS WERE 3086 01:55:23,742 --> 01:55:25,410 MEMBERS OF MY FAMILY AND SAW MY 3087 01:55:25,410 --> 01:55:27,679 POTENTIAL AND GUIDED ME AND SAW 3088 01:55:27,679 --> 01:55:30,682 ME ONWARD I WHOLEHEARTEDLY THAT 3089 01:55:30,682 --> 01:55:32,384 SCIENCE IS NOT A SOLITARY EFFORT 3090 01:55:32,384 --> 01:55:33,051 BUT ONE INFORMED BY YOUR 3091 01:55:33,051 --> 01:55:38,290 COMMUNITIES. AS I WANTED TO 3092 01:55:38,290 --> 01:55:39,825 THINK MORE ABOUT GENOMIC 3093 01:55:39,825 --> 01:55:41,360 RESEARCH AND MOVE MY RESEARCH 3094 01:55:41,360 --> 01:55:45,931 BEYOND GENETIC FINDINGS, I FOUND 3095 01:55:45,931 --> 01:55:47,766 THAT THERE WAS A DISCONNECT 3096 01:55:47,766 --> 01:55:49,735 BETWEEN GENOMIC RESEARCH AND 3097 01:55:49,735 --> 01:55:51,737 INDIGENOUS COMMUNITIES. I THINK 3098 01:55:51,737 --> 01:55:54,106 MANY PEOPLE THINK THAT NATIVE 3099 01:55:54,106 --> 01:55:57,276 AMERICANS ARE ANTISCIENCE. BUT 3100 01:55:57,276 --> 01:55:58,577 REALLY WE JUST WANT RESEARCH TO 3101 01:55:58,577 --> 01:56:00,879 BE DONE ON OUR OWN TERMS WE HAVE 3102 01:56:00,879 --> 01:56:05,384 OUR OWN WORDS FOR DNA SO IN 3103 01:56:05,384 --> 01:56:07,085 NAVAJO WE HAVE OUR OWN WAYS OF 3104 01:56:07,085 --> 01:56:09,054 KEEP TRACKING OF OUR GENEALOGY 3105 01:56:09,054 --> 01:56:11,757 AND SOCIAL RELATIONSHIPS AND 3106 01:56:11,757 --> 01:56:13,292 HISTORIES AND FAMILY TRAITS. WE 3107 01:56:13,292 --> 01:56:14,626 HAVE COMPLEX RELATIONSHIPS WITH 3108 01:56:14,626 --> 01:56:17,396 OUR ENVIRONMENT AND ECOLOGIES 3109 01:56:17,396 --> 01:56:18,997 AND REALLY WE JUST WANT OUR 3110 01:56:18,997 --> 01:56:20,632 FAMILIES AND FUTURE GENERATIONS 3111 01:56:20,632 --> 01:56:22,234 TO BE HEALTHY TOO. SOMETHING 3112 01:56:22,234 --> 01:56:26,238 THAT MANY OTHER COMMUNITIES ALSO 3113 01:56:26,238 --> 01:56:28,740 FEEL. BUT WHEN THE GENOMIC 3114 01:56:28,740 --> 01:56:31,109 REVELATION -- REVOLUTION STARTED 3115 01:56:31,109 --> 01:56:33,278 GAINING MOMENTUM, INDIGENOUS 3116 01:56:33,278 --> 01:56:37,082 PEOPLES WERE HESITANT TO 3117 01:56:37,082 --> 01:56:39,751 PARTICIPATE BECAUSE OF PAST 3118 01:56:39,751 --> 01:56:42,421 ABUSE, RESEARCH MISCONDUCT AND 3119 01:56:42,421 --> 01:56:44,156 HELICOPTER SCIENCE. THIS IS ONE 3120 01:56:44,156 --> 01:56:47,726 EXAMPLE OF THE HAVASUPAI TRIBAL 3121 01:56:47,726 --> 01:56:50,595 MEMBERS LEARNING THAT THEIR DNA 3122 01:56:50,595 --> 01:56:53,665 SAMPLES WERE USED FOR -- TO 3123 01:56:53,665 --> 01:56:54,299 STUDY SCHIZOPHRENIA AND HUMAN 3124 01:56:54,299 --> 01:56:56,368 MIGRATION RESEARCH, THINGS THAT 3125 01:56:56,368 --> 01:56:58,170 THEY HAD NOT AGREED TO INITIALLY 3126 01:56:58,170 --> 01:57:02,874 SO BACK IN 2010 THIS WAS SETTLED 3127 01:57:02,874 --> 01:57:05,110 OUTSIDE OF COURT AND THE TRIBAL 3128 01:57:05,110 --> 01:57:06,478 MEMBERS WERE ABLE TO RECEIVE 3129 01:57:06,478 --> 01:57:08,313 THEIR SAMPLES BACK BUT THIS HAS 3130 01:57:08,313 --> 01:57:09,948 REALLY AFFECTED THAT COMMUNITY. 3131 01:57:09,948 --> 01:57:11,783 THAT COMMUNITY IS STILL VERY, 3132 01:57:11,783 --> 01:57:14,152 VERY DISTRUSTFUL OF RESEARCHERS 3133 01:57:14,152 --> 01:57:15,754 COMING INTO THEIR COMMUNITY AND 3134 01:57:15,754 --> 01:57:19,458 TAKING SAMPLES AND NOT COMING 3135 01:57:19,458 --> 01:57:23,895 BACK.SO WITHIN MY OWN TRIBAL 3136 01:57:23,895 --> 01:57:25,597 COMMUNITY, GENETIC RESEARCH IS 3137 01:57:25,597 --> 01:57:27,232 ACTUALLY NOT EVEN ALLOWED. 3138 01:57:27,232 --> 01:57:29,534 SO IN -- BACK IN 2002 RIGHT 3139 01:57:29,534 --> 01:57:32,804 AROUND THE TIME I WAS STARTING 3140 01:57:32,804 --> 01:57:34,272 COLLEGE, A MORATORIUM OR A BAN 3141 01:57:34,272 --> 01:57:37,342 ON GENETIC RESEARCH WAS PUT IN 3142 01:57:37,342 --> 01:57:41,480 PLACE ON THE NAVAJO NATION. AND 3143 01:57:41,480 --> 01:57:43,215 THIS WAS BECAUSE AT THAT TIME 3144 01:57:43,215 --> 01:57:45,817 THERE WAS A LOT GOING ON WITH 3145 01:57:45,817 --> 01:57:48,854 THE -- WITH DIFFERENT PROJECTS 3146 01:57:48,854 --> 01:57:51,757 TRYING TO OBTAIN SAMPLES FROM 3147 01:57:51,757 --> 01:57:53,692 INDIGENOUS PEOPLES BUT FOR THE 3148 01:57:53,692 --> 01:57:55,260 NAVAJO PEOPLE THEY CONSULTED 3149 01:57:55,260 --> 01:57:58,630 WITH THEIR TRIBAL LEADERS, AND 3150 01:57:58,630 --> 01:57:59,431 ALSO NAVAJO PEOPLE WITH TRAINING 3151 01:57:59,431 --> 01:58:01,767 AND THEY REALIZED THAT THE 3152 01:58:01,767 --> 01:58:03,735 NAVAJO NATION LACKED POLICIES 3153 01:58:03,735 --> 01:58:05,570 FOR GENETIC RESEARCH PROTOCOLS 3154 01:58:05,570 --> 01:58:08,240 AND OVER 20 YEARS LATER THIS 3155 01:58:08,240 --> 01:58:09,641 MORATORIUM IS STILL IN PLACE. 3156 01:58:09,641 --> 01:58:11,443 SO I THINK THAT IT'S -- I THINK 3157 01:58:11,443 --> 01:58:14,780 IT'S IRONIC, SOMETIMES THAT 3158 01:58:14,780 --> 01:58:18,450 MY -- I RECEIVED MY PH.D. IN 3159 01:58:18,450 --> 01:58:21,053 GENETICS BUT I'M NOT ABLE TO 3160 01:58:21,053 --> 01:58:22,120 CONDUCT ANY GENETIC RESEARCH 3161 01:58:22,120 --> 01:58:23,722 WITH MY OWN TRIBAL COMMUNITY BUT 3162 01:58:23,722 --> 01:58:26,091 I THINK IT'S PRECISELY BECAUSE 3163 01:58:26,091 --> 01:58:30,262 OF THIS LACK OF NAVAJO AND OTHER 3164 01:58:30,262 --> 01:58:31,963 INDIGENOUS GENETICISTS THAT I 3165 01:58:31,963 --> 01:58:36,268 PURSUED THIS PATH. WE LOOKED AT 3166 01:58:36,268 --> 01:58:37,669 THE LITERATURE, WE DID A 3167 01:58:37,669 --> 01:58:39,738 LITERATURE REVIEW AND WE LOOKED 3168 01:58:39,738 --> 01:58:41,540 AT STUDIES THAT HAD BEEN 3169 01:58:41,540 --> 01:58:43,275 CONDUCTED IN NAVAJO PEOPLE. 3170 01:58:43,275 --> 01:58:44,776 THESE ARE JUST A SNAPSHOT OF 3171 01:58:44,776 --> 01:58:47,512 SOME OF THE STUDIES AND JUST 3172 01:58:47,512 --> 01:58:51,416 FROM THE TITLES YOU KNOW THEY'RE 3173 01:58:51,416 --> 01:58:52,651 A LITTLE BIT, MIGHT HAVE SOME 3174 01:58:52,651 --> 01:58:54,386 ISSUES SO ONE OF THEM WAS 3175 01:58:54,386 --> 01:58:56,855 INBREEDING COEFFICIENTS IN THE 3176 01:58:56,855 --> 01:58:58,557 NAVAJO POPULATION. ANOTHER WAS 3177 01:58:58,557 --> 01:59:01,426 A STUDY OF BLOOD GROUPS AMONG 3178 01:59:01,426 --> 01:59:01,893 AMERICAN INDIANS IN 3179 01:59:01,893 --> 01:59:03,295 THE-AND-A-HALF ROW BUT FOR THIS 3180 01:59:03,295 --> 01:59:05,597 STUDY OF THE BLOOD GROUPS A LOT 3181 01:59:05,597 --> 01:59:09,668 OF THOSE SAMPLES WERE COLLECTED 3182 01:59:09,668 --> 01:59:10,635 FROM CHILDREN IN BOARDING 3183 01:59:10,635 --> 01:59:11,703 SCHOOLS IN THE NAVAJO NATION. 3184 01:59:11,703 --> 01:59:15,006 AND THEN THIS OTHER STUDY ON 3185 01:59:15,006 --> 01:59:16,508 COLORECTAL CANCER THE STUDY 3186 01:59:16,508 --> 01:59:24,916 PUBLISHED VERY DETAIL DETAILE 3187 01:59:24,916 --> 01:59:27,752 PEDIGREES AND SINCE THESE ARE 3188 01:59:27,752 --> 01:59:35,260 ICE -- ISOLATED COMMUNITIES 3189 01:59:35,260 --> 01:59:35,861 THERE WERE ISSUES. 3190 01:59:35,861 --> 01:59:37,629 AND WE RECEIVED PUBLICATIONS 3191 01:59:37,629 --> 01:59:40,899 FROM THE EARLY 1900S AND FEW 3192 01:59:40,899 --> 01:59:44,169 STUDIES MADE MENTION OBTAINING 3193 01:59:44,169 --> 01:59:45,871 TRIBAL IRB APPROVAL AND WHILE 3194 01:59:45,871 --> 01:59:48,073 STANDARDS HAVE CHANGED THIS 3195 01:59:48,073 --> 01:59:50,275 REFLECTS THE TREND OF HOW FEW 3196 01:59:50,275 --> 01:59:52,210 STUDIES INVOLVED COMMUNITIES AND 3197 01:59:52,210 --> 01:59:59,751 RESPECTED TRIBAL SOVEREIGNTY. 3198 01:59:59,751 --> 02:00:02,087 SO MORE BROADLY IN NATIVE 3199 02:00:02,087 --> 02:00:03,221 AMERICAN COMMUNITIES THESE ARE 3200 02:00:03,221 --> 02:00:04,823 THE CONCERNS OF PARTICIPATION 3201 02:00:04,823 --> 02:00:06,491 AND RESEARCH. THERE ARE MANY 3202 02:00:06,491 --> 02:00:09,327 CULTURAL AND ETHICAL CONCERNS. 3203 02:00:09,327 --> 02:00:10,595 THERE'S ALWAYS CONCERNS ABOUT 3204 02:00:10,595 --> 02:00:15,333 THE LACK OF ADEQUATE COMMUNITY 3205 02:00:15,333 --> 02:00:16,334 CONSULTATIONS. AND SPECIFICALLY 3206 02:00:16,334 --> 02:00:20,572 WHEN WE'RE IN THE GENOMIC ERA 3207 02:00:20,572 --> 02:00:22,274 THERE'S CONCERNS ABOUT LONG-TERM 3208 02:00:22,274 --> 02:00:30,415 DATA STORAGE AND BUY LOW C-- BI 3209 02:00:30,415 --> 02:00:31,516 SAMPLE STEWARDSHIP. 3210 02:00:31,516 --> 02:00:34,653 I WANTED TO FOCUS ON QUESTIONS 3211 02:00:34,653 --> 02:00:37,322 OF MY COMMUNITY BACK WHEN I 3212 02:00:37,322 --> 02:00:38,924 STARTED MY POSTDOC PERSONALIZED 3213 02:00:38,924 --> 02:00:41,860 MEDICINE WAS A BUZZWORD IN THE 3214 02:00:41,860 --> 02:00:43,595 COMMUNITY AND I THINK STILL IS I 3215 02:00:43,595 --> 02:00:45,430 DECIDED TO FOCUS ON 3216 02:00:45,430 --> 02:00:46,198 PHARMACOGENOMICS BECAUSE I 3217 02:00:46,198 --> 02:00:49,568 THOUGHT OF THAT AS SORT OF THE 3218 02:00:49,568 --> 02:00:50,335 FOUNDATION OF PRECISION MEDICINE 3219 02:00:50,335 --> 02:00:51,937 AND A LOT OF PEOPLE THOUGHT THIS 3220 02:00:51,937 --> 02:00:53,672 WAS ONE OF THE LOW-HANGING 3221 02:00:53,672 --> 02:00:55,941 FRUITS OF HOW YOU COULD USE 3222 02:00:55,941 --> 02:01:01,079 GENETICS INFORM DRUG DOSAGE AND 3223 02:01:01,079 --> 02:01:03,748 DRUG, WHAT PRESCRIPTIONS THAT 3224 02:01:03,748 --> 02:01:07,719 YOU USE. ALSO I WAS DRAWN TO 3225 02:01:07,719 --> 02:01:14,359 THIS AREA BECAUSE OF TRADITIONAL 3226 02:01:14,359 --> 02:01:15,360 MEDICINES USED IN OUR COMMUNITY 3227 02:01:15,360 --> 02:01:17,195 TODAY AND HAVE INFORMED A LOT OF 3228 02:01:17,195 --> 02:01:19,698 THE PHARMACEUTICAL DRUGS THAT 3229 02:01:19,698 --> 02:01:22,400 HAVE BEEN CREATED IN MODERN 3230 02:01:22,400 --> 02:01:25,570 TIMES. BUT OF COURSE AS YOU GO 3231 02:01:25,570 --> 02:01:28,273 THROUGH THE STEM FIELDS THERE 3232 02:01:28,273 --> 02:01:33,144 ARE DEFINITELY UNEQUAL -- 3233 02:01:33,144 --> 02:01:34,079 INEQUALITIES THAT YOU EXPERIENCE 3234 02:01:34,079 --> 02:01:37,282 ESPECIALLY COMING FROM A TRIBAL 3235 02:01:37,282 --> 02:01:40,352 COMMUNITY AND THEN BEING IN A 3236 02:01:40,352 --> 02:01:41,753 LARGER INSTITUTION SOME OF THESE 3237 02:01:41,753 --> 02:01:43,154 INCLUDED SOME SACRIFICES OF 3238 02:01:43,154 --> 02:01:45,290 BEING AWAY FROM HOME. LOSING 3239 02:01:45,290 --> 02:01:46,825 SOME OF MY LANGUAGE AND NOT 3240 02:01:46,825 --> 02:01:51,730 BEING ABLE TO BE A PART OF OUR 3241 02:01:51,730 --> 02:01:53,932 TRADITIONAL EVENTS AND 3242 02:01:53,932 --> 02:01:54,633 CEREMONIAL EVENTS BACK HOME. 3243 02:01:54,633 --> 02:01:58,003 THERE'S A LOT OF SELF-DOUBT AND 3244 02:01:58,003 --> 02:01:59,237 IMPOSTER SYNDROME, LONELINESS 3245 02:01:59,237 --> 02:02:02,841 AND ALSO AS I STARTED GETTING 3246 02:02:02,841 --> 02:02:05,110 INTO MY POST-DOCTORAL POSITION 3247 02:02:05,110 --> 02:02:08,013 AND FACULTY POSITIONS I REALIZED 3248 02:02:08,013 --> 02:02:10,048 THERE WERE NOT EQUAL NETWORKS. 3249 02:02:10,048 --> 02:02:11,149 I DID NOT HAVE THOSE ESTABLISHED 3250 02:02:11,149 --> 02:02:14,786 NETWORKS THAT A LOT OF FOLKS 3251 02:02:14,786 --> 02:02:17,822 HAVE. IF YOU HAVE FAMILY MIGHT 3252 02:02:17,822 --> 02:02:19,691 BE WHO IS HAD GONE THROUGH 3253 02:02:19,691 --> 02:02:21,359 HIGHER EDUCATION TRAINING 3254 02:02:21,359 --> 02:02:23,495 BEFORE. SO A PART OF MY 3255 02:02:23,495 --> 02:02:25,697 MOTIVATIONS FOR MY RESEARCH 3256 02:02:25,697 --> 02:02:27,332 PROGRAM IS REALLY SUPPORTING 3257 02:02:27,332 --> 02:02:30,168 EQUITY AND INCLUSION OF DIVERSE 3258 02:02:30,168 --> 02:02:31,569 POPULATIONS IN GENOMIC RESEARCH. 3259 02:02:31,569 --> 02:02:33,338 ALSO ADDRESSING HEALTH AND 3260 02:02:33,338 --> 02:02:35,907 HEALTH CARE DISPARITIES AND THEN 3261 02:02:35,907 --> 02:02:39,010 ENHANCING ETHICAL RESEARCH WITH 3262 02:02:39,010 --> 02:02:40,545 INDIGENOUS AND OTHER 3263 02:02:40,545 --> 02:02:41,279 UNDERREPRESENTED COMMUNITIES AND 3264 02:02:41,279 --> 02:02:43,548 I LIKE TO SHOW THIS FIGURE HERE 3265 02:02:43,548 --> 02:02:46,551 BECAUSE THIS IS THE -- ONE OF 3266 02:02:46,551 --> 02:02:48,887 THE GWAS MONITORS. DAILY I 3267 02:02:48,887 --> 02:02:50,555 THINK THIS WAS FROM TO YEARS AGO 3268 02:02:50,555 --> 02:02:53,658 SO I HAVE TO UPDATE THIS BUT IT 3269 02:02:53,658 --> 02:02:54,426 HASN'T REALLY CHANGED. 3270 02:02:54,426 --> 02:02:58,029 SO IF YOU LOOK AT THIS GWAS 3271 02:02:58,029 --> 02:02:59,864 DIVERSITY MONITOR YOU WILL SEE 3272 02:02:59,864 --> 02:03:01,700 REALTIME HOW MANY STUDIES ARE 3273 02:03:01,700 --> 02:03:03,868 INVOLVING OTHER POPULATIONS. BY 3274 02:03:03,868 --> 02:03:08,340 FAR ABOUT 95% ARE EUROPEAN 3275 02:03:08,340 --> 02:03:10,008 DISSENT POPULATION WHO IS ARE 3276 02:03:10,008 --> 02:03:11,743 INVOLVED IN THESE LARGE-SCALE 3277 02:03:11,743 --> 02:03:12,377 GENOME PROJECTS. 3278 02:03:12,377 --> 02:03:17,582 AND THE REST OF THE 4-5% ARE ALL 3279 02:03:17,582 --> 02:03:20,352 OF THE OTHER WORLD POPULATION. 3280 02:03:20,352 --> 02:03:22,287 INDIGENOUS PEOPLES AREN'T ON 3281 02:03:22,287 --> 02:03:27,659 HERE BUT THEY'RE ABOUT .04% 3282 02:03:27,659 --> 02:03:30,895 REPRESENTATION. SO THAT'S WHY I 3283 02:03:30,895 --> 02:03:32,764 HAVE MY LAB. AND IT'S 3284 02:03:32,764 --> 02:03:34,466 SPECIFICALLY FOCUSED ON WORKING 3285 02:03:34,466 --> 02:03:36,101 WITH INDIGENOUS PEOPLES. ONE 3286 02:03:36,101 --> 02:03:38,636 PART OF MY LAB DOES 3287 02:03:38,636 --> 02:03:41,873 PHARMACOGENOMICS RESEARCH SO WE 3288 02:03:41,873 --> 02:03:43,875 STUDY THE CYTOCHROME ENZYMES AND 3289 02:03:43,875 --> 02:03:46,578 WORK WITH TRIBAL PARTNER TO 3290 02:03:46,578 --> 02:03:47,512 DETERMINE WHAT THEY'RE 3291 02:03:47,512 --> 02:03:47,879 INTERESTED IN. 3292 02:03:47,879 --> 02:03:50,582 SO ONE OF THE AREAS THAT BECAME 3293 02:03:50,582 --> 02:03:51,750 INTERESTING TO TRIBAL PARTNERS 3294 02:03:51,750 --> 02:03:54,419 WERE LOOKING AT NICOTINE 3295 02:03:54,419 --> 02:03:55,387 METABOLISM AND HOW WE CAN USE 3296 02:03:55,387 --> 02:03:59,190 THAT TO CREATE PERSONALIZED 3297 02:03:59,190 --> 02:04:01,259 PHARMACOTHERAPY FOR PEOPLE WHO 3298 02:04:01,259 --> 02:04:04,062 WANTED TO STOP SMOKING THE OTHER 3299 02:04:04,062 --> 02:04:05,230 ASPECT OF MY WET LAB WE'RE 3300 02:04:05,230 --> 02:04:08,266 TRYING TO UNDERSTAND WHAT THESE 3301 02:04:08,266 --> 02:04:09,434 VARIANTS DO IN CELL CULTURES AND 3302 02:04:09,434 --> 02:04:12,337 THEN A PART OF MY BACKGROUND IS 3303 02:04:12,337 --> 02:04:14,439 IN EVOLUTIONARY GENOMICS SO I'M 3304 02:04:14,439 --> 02:04:17,609 REALLY INTERESTED IN SEEING HOW 3305 02:04:17,609 --> 02:04:20,412 THESE ENZYMES HAVE CHANGED OVER 3306 02:04:20,412 --> 02:04:21,679 TIME. AND THEN THE OTHER PART 3307 02:04:21,679 --> 02:04:26,618 OF MY WORK SORT OF AROSE OUT OF 3308 02:04:26,618 --> 02:04:27,752 MY EFFORTS TO DO COMMUNITY 3309 02:04:27,752 --> 02:04:29,454 ENGAGED RESEARCH WITH 3310 02:04:29,454 --> 02:04:31,423 COMMUNITIES. SOMETIMES 3311 02:04:31,423 --> 02:04:32,957 COMMUNITIES WERE NOT READY TO 3312 02:04:32,957 --> 02:04:35,126 JUMP INTO A FULL BLOWN RESEARCH 3313 02:04:35,126 --> 02:04:37,695 STUDY. SO WE STEPPED BACK AND 3314 02:04:37,695 --> 02:04:39,664 THEN WE DECIDED TO DO LOOK USING 3315 02:04:39,664 --> 02:04:41,433 QUALITATIVE AND MIXED METHODS 3316 02:04:41,433 --> 02:04:42,600 RESEARCH WE DECIDED TO ACTUALLY 3317 02:04:42,600 --> 02:04:44,135 TAKE A LOOK AT WHAT'S THE 3318 02:04:44,135 --> 02:04:45,804 LANDSCAPE LIKE IN THE 3319 02:04:45,804 --> 02:04:46,471 COMMUNITIES? SO THIS IS ONE OF 3320 02:04:46,471 --> 02:04:49,340 THE PROJECTS THAT I'M DOING WITH 3321 02:04:49,340 --> 02:04:51,910 THE NAVAJO NATION. WHERE WE ARE 3322 02:04:51,910 --> 02:04:53,278 ACTUALLY SERVING PEOPLE ABOUT 3323 02:04:53,278 --> 02:04:56,781 WHAT DO THEY THINK ABOUT GENETIC 3324 02:04:56,781 --> 02:04:57,982 RESEARCH, WHAT DO THEY THINK 3325 02:04:57,982 --> 02:04:59,984 ABOUT THE MORATORIUM, WHAT ARE 3326 02:04:59,984 --> 02:05:01,352 BIG CONCERNS IN THEIR 3327 02:05:01,352 --> 02:05:03,721 COMMUNITIES, DO SO I DO THIS 3328 02:05:03,721 --> 02:05:04,656 RESEARCH WITH VARIOUS 3329 02:05:04,656 --> 02:05:04,989 COMMUNITIES. 3330 02:05:04,989 --> 02:05:07,692 WHO REALLY WANT TO TAKE A STEP 3331 02:05:07,692 --> 02:05:09,394 BACK AND TALK BEFORE YOU JUMP 3332 02:05:09,394 --> 02:05:11,362 INTO THE ACTUAL RESEARCH. THE 3333 02:05:11,362 --> 02:05:12,931 OTHER PART OF MY WORK IS LOOKING 3334 02:05:12,931 --> 02:05:15,800 AT ANCIENT DNA ETHICS AND THEN 3335 02:05:15,800 --> 02:05:18,002 ALSO MENTORING INDIGENOUS 3336 02:05:18,002 --> 02:05:19,971 TRAINEES THROUGH THE SING 3337 02:05:19,971 --> 02:05:22,407 PROGRAM AS WELL AS THE PRIME 3338 02:05:22,407 --> 02:05:23,741 PROGRAM SO I'M EXTREMELY 3339 02:05:23,741 --> 02:05:26,878 THANKFUL TO ALL OF MY TRAINEES, 3340 02:05:26,878 --> 02:05:27,745 COLLABORATORS AND TRIBAL PARTNER 3341 02:05:27,745 --> 02:05:28,413 WHO IS REALLY MOVED THIS 3342 02:05:28,413 --> 02:05:30,215 RESEARCH FORWARD. THE OTHER BIG 3343 02:05:30,215 --> 02:05:31,850 PART OF MY LABORATORY IS 3344 02:05:31,850 --> 02:05:33,785 BRINGING MY CULTURE INTO THE 3345 02:05:33,785 --> 02:05:35,620 LAB. SO THIS IS AN ACTUAL 3346 02:05:35,620 --> 02:05:38,223 PICTURE OF MY LAB BACK IN 2020 3347 02:05:38,223 --> 02:05:42,594 WHEN I WAS ABLE TO MOVE INTO THE 3348 02:05:42,594 --> 02:05:47,732 SPACE BUT WE HAD A TRADITIONAL 3349 02:05:47,732 --> 02:05:49,667 CEREMONY TO OPEN UP THE LAB 3350 02:05:49,667 --> 02:05:52,103 BEFORE ANY SAMPLES WERE BROUGHT 3351 02:05:52,103 --> 02:05:54,072 IN I ALSO HAVE INDIGENOUS 3352 02:05:54,072 --> 02:05:56,207 TRAINEES WHO WORK IN MY LAB AND 3353 02:05:56,207 --> 02:05:59,744 OFTEN CONTACT ME FOR TRAINING 3354 02:05:59,744 --> 02:06:01,079 OPPORTUNITIES. BUT I WANTED TO 3355 02:06:01,079 --> 02:06:04,249 SWITCH GEARS INTO THIS IDEA 3356 02:06:04,249 --> 02:06:08,753 ABOUT INDIGENOUS SCIENCE. SO, 3357 02:06:08,753 --> 02:06:11,256 INDIGENOUS PEOPLE HAVE ALWAYS 3358 02:06:11,256 --> 02:06:12,824 BEEN SCIENTISTS. FROM BUNCH 3359 02:06:12,824 --> 02:06:15,927 PRACTICES IN SOME INDIGENOUS 3360 02:06:15,927 --> 02:06:17,862 COMMUNITIES, A LOT OF THE 3361 02:06:17,862 --> 02:06:20,598 VEGETABLES THAT WE HAVE TODAY 3362 02:06:20,598 --> 02:06:23,334 ARE -- WERE OR RELIGIONALLY 3363 02:06:23,334 --> 02:06:25,270 DOMESTICATED BY INDIGENOUS 3364 02:06:25,270 --> 02:06:25,870 PEOPLES AND EVEN THOUGH THERE 3365 02:06:25,870 --> 02:06:27,739 WAS NOT THE UNDERSTANDING OF 3366 02:06:27,739 --> 02:06:30,575 GENETICS AS WE HAVE IT, NOW 3367 02:06:30,575 --> 02:06:33,211 THERE IS -- THERE WAS DEFINITELY 3368 02:06:33,211 --> 02:06:37,382 AN UNDERSTANDING OF HOW YOU WERE 3369 02:06:37,382 --> 02:06:39,751 ABLE TO MAINTAIN BALANCE WITH 3370 02:06:39,751 --> 02:06:41,920 THE ENVIRONMENT BUT ALSO 3371 02:06:41,920 --> 02:06:43,721 CULTIVATE DOMESTIC PRODUCTS OR 3372 02:06:43,721 --> 02:06:46,624 PRODUCTS THAT PEOPLE COULD EAT 3373 02:06:46,624 --> 02:06:48,259 AND USE. SO WITHIN INDIGENOUS 3374 02:06:48,259 --> 02:06:50,528 SCIENCE THERE ARE MULTIPLE WAYS 3375 02:06:50,528 --> 02:06:51,930 OF KNOWING. SOMETIMES PEOPLE 3376 02:06:51,930 --> 02:06:56,868 CALL THIS TRADITION AL KNOWLEDG, 3377 02:06:56,868 --> 02:06:58,202 OR INDIGENOUS KNOWLEDGE, OFTEN 3378 02:06:58,202 --> 02:07:00,672 THESE ARE PASSED ON THROUGH ORAL 3379 02:07:00,672 --> 02:07:02,006 OR WRITTEN KNOWLEDGE A LOT OF 3380 02:07:02,006 --> 02:07:07,712 TYPES IT'S ORALLY TRANSMITTED. 3381 02:07:07,712 --> 02:07:09,280 CEREMONIAL PRACTICES AND BELIEFS 3382 02:07:09,280 --> 02:07:10,782 AND ALSO A GENERAL KNOWLEDGE 3383 02:07:10,782 --> 02:07:13,117 PASSED ON FROM OUR ANCESTORS SO 3384 02:07:13,117 --> 02:07:15,086 RECENTLY, WELL, NOT SO RECENTLY, 3385 02:07:15,086 --> 02:07:17,755 IT'S FIVE YEARS AGO BUT WE, A 3386 02:07:17,755 --> 02:07:20,925 COLLEAGUE AND I PUBLISHED AN 3387 02:07:20,925 --> 02:07:21,993 INDIGENOUS SCIENCE SPECIAL ISSUE 3388 02:07:21,993 --> 02:07:24,429 IN HUMAN BIOLOGY WHERE WE 3389 02:07:24,429 --> 02:07:25,263 HIGHLIGHT MULTIPLE INDIGENOUS 3390 02:07:25,263 --> 02:07:29,367 AUTHOR WHO IS ARE INCORPORATING 3391 02:07:29,367 --> 02:07:30,702 INDIGENOUS SCIENCE. 3392 02:07:30,702 --> 02:07:31,903 INTO THEIR RESEARCH PROTOCOLS. 3393 02:07:31,903 --> 02:07:34,072 SO TAKE A LOOK, I THINK IT'S 3394 02:07:34,072 --> 02:07:36,874 FREELY AVAILABLE IF PEOPLE ARE 3395 02:07:36,874 --> 02:07:39,077 INTERESTED. BUT MOVING INTO THE 3396 02:07:39,077 --> 02:07:42,547 WORK THAT I DO, SO WITHIN THE 3397 02:07:42,547 --> 02:07:46,451 UNITED STATES, THERE ARE OVER 3398 02:07:46,451 --> 02:07:49,687 574 FEDERALLY RECOGNIZED TRIBES 3399 02:07:49,687 --> 02:07:54,359 ABOUT 70-80% OF THE TRIBAL 3400 02:07:54,359 --> 02:07:55,727 MEMBERS LIVE IN CITIES AND NOT 3401 02:07:55,727 --> 02:07:59,530 THE COMMUNITIES. SO A LOT OF 3402 02:07:59,530 --> 02:08:01,566 MAJOR CITIES, WASHINGTON DC, 3403 02:08:01,566 --> 02:08:03,735 DENVER, PHOENIX, A LOT OF THESE 3404 02:08:03,735 --> 02:08:05,536 PEOPLE HAVE NATIVE SCHEMES JUST 3405 02:08:05,536 --> 02:08:08,539 TO GO BACK TO SOME OF THE 3406 02:08:08,539 --> 02:08:09,273 ETHICAL. 3407 02:08:09,273 --> 02:08:10,341 REGULATIONS IN PLACE SO I'M SURE 3408 02:08:10,341 --> 02:08:11,776 MANY OF YOU HAVE HEARD OF THE 3409 02:08:11,776 --> 02:08:14,812 COMMON RULE. SO THE COMMON RULE 3410 02:08:14,812 --> 02:08:16,047 UPHOLDS TRIBAL SOVEREIGNTY SO 3411 02:08:16,047 --> 02:08:19,317 WHAT DOES THAT MEAN? THAT MEANS 3412 02:08:19,317 --> 02:08:22,754 THAT THE TRIBAL SOVEREIGNTY IS 3413 02:08:22,754 --> 02:08:25,723 EXTENDS TO RECOGNIZE AMERICAN 3414 02:08:25,723 --> 02:08:27,525 INDIAN ALASKAN NATIVE TRIBES BUT 3415 02:08:27,525 --> 02:08:29,193 THE COMMON RULE UPHOLDS THE 3416 02:08:29,193 --> 02:08:31,663 RIGHT OF AUTHORITY OF U.S. TRIBE 3417 02:08:31,663 --> 02:08:32,930 TO APPROVE OR DISAPPROVE OF 3418 02:08:32,930 --> 02:08:36,234 RESEARCH IN THEIR COMMUNITY. SO 3419 02:08:36,234 --> 02:08:39,203 IT IS A LEGAL THING WHERE YOU DO 3420 02:08:39,203 --> 02:08:40,805 HAVE TO CONSULT WITH TRIBAL 3421 02:08:40,805 --> 02:08:42,340 COMMUNITIES IF YOU'RE PLANNING 3422 02:08:42,340 --> 02:08:43,975 TO DO RESEARCH WITH THEM. SO 3423 02:08:43,975 --> 02:08:46,477 WITHIN MY FIELD, PERSONALIZED 3424 02:08:46,477 --> 02:08:48,246 AND PRECISION MEDICINE THIS IS A 3425 02:08:48,246 --> 02:08:51,783 FIELD THAT TRIES TO USE GENETIC 3426 02:08:51,783 --> 02:08:53,918 INFORMATION, ENVIRONMENT AND 3427 02:08:53,918 --> 02:08:56,087 LIFESTYLE TO AID IN THE 3428 02:08:56,087 --> 02:08:57,422 DIAGNOSIS, PREVENTION AND 3429 02:08:57,422 --> 02:08:58,056 TREATMENT OF DISEASES AND I AM 3430 02:08:58,056 --> 02:08:59,791 SURE MANY OF YOU HAVE HEARD OF, 3431 02:08:59,791 --> 02:09:05,363 OOPS. OF SOME OF THESE EFFORTS, 3432 02:09:05,363 --> 02:09:07,665 THE ALL OF US IS ONE OF THE MOST 3433 02:09:07,665 --> 02:09:10,168 WELL-KNOWN EFFORTS, THE 3434 02:09:10,168 --> 02:09:12,503 PRECISION INITIATIVE WHICH WAS 3435 02:09:12,503 --> 02:09:14,305 ANNOUNCED BY -- PRESIDENT BARACK 3436 02:09:14,305 --> 02:09:16,908 OBAMA A COUPLE YEARS AGO AND NOW 3437 02:09:16,908 --> 02:09:18,943 THERE ARE OTHER BIOBANKS THAT 3438 02:09:18,943 --> 02:09:20,678 ARE TRYING TO DO SOMETHING 3439 02:09:20,678 --> 02:09:23,815 SIMILAR WHERE THEY'RE COLLECTING 3440 02:09:23,815 --> 02:09:24,982 SAMPLES AND HOPING TO USE THIS 3441 02:09:24,982 --> 02:09:27,752 INFORMATION COUPLED WITH 3442 02:09:27,752 --> 02:09:28,486 ELECTRONIC HEALTH MEDICAL 3443 02:09:28,486 --> 02:09:31,756 RECORDS AND VERY DETAILED 3444 02:09:31,756 --> 02:09:32,890 SURVEYS TO MAKE THIS INFORMATION 3445 02:09:32,890 --> 02:09:35,760 AVAILABLE TO RESEARCHERS WHO 3446 02:09:35,760 --> 02:09:38,262 WANT TO STUDY DIFFERENT DISEASES 3447 02:09:38,262 --> 02:09:42,700 AND HEALTH CONDITIONS. SO 3448 02:09:42,700 --> 02:09:43,801 WITHIN PHARMACOGENOMICS, THIS 3449 02:09:43,801 --> 02:09:45,937 FIELD AIMS TO ESTABLISH HOW 3450 02:09:45,937 --> 02:09:47,638 GENES AFFECT A PERSON'S RESPONSE 3451 02:09:47,638 --> 02:09:51,776 TO DRUGS. AND PHARMACOGENOMICS 3452 02:09:51,776 --> 02:09:53,277 GUIDES THE SELECTION OF THE BEST 3453 02:09:53,277 --> 02:09:55,313 DRUG AND DOSE OF AN INDIVIDUAL 3454 02:09:55,313 --> 02:09:56,881 AND IT'S PREDICTED TO REDUCE THE 3455 02:09:56,881 --> 02:09:58,816 COST OF ADVERSE DRUG REACTIONS 3456 02:09:58,816 --> 02:10:01,719 WHICH IS ACTUALLY QUITE 3457 02:10:01,719 --> 02:10:05,256 EXPENSIVE IN THE RIGHT NOW IN 3458 02:10:05,256 --> 02:10:07,325 HEALTH CARE. SO IF I GO TO THIS 3459 02:10:07,325 --> 02:10:10,061 CARTOON AND TAKE A DIVERSE 3460 02:10:10,061 --> 02:10:11,195 POPULATION HERE, SOMETIMES IF 3461 02:10:11,195 --> 02:10:14,265 YOU TREAT A CERTAIN POPULATION 3462 02:10:14,265 --> 02:10:15,767 WITH A PARTICULAR MEDICATION THE 3463 02:10:15,767 --> 02:10:18,202 VAST MAJORITY WILL HAVE A 3464 02:10:18,202 --> 02:10:19,370 FAVORABLE RESPONSE SO YOU'RE 3465 02:10:19,370 --> 02:10:20,605 ABLE TO TREAT THESE PEOPLE IN 3466 02:10:20,605 --> 02:10:23,074 BLUE WITH A CONVENTIONAL DRUG OR 3467 02:10:23,074 --> 02:10:24,575 DOSE. BUT THERE ARE OTHER 3468 02:10:24,575 --> 02:10:26,077 PEOPLE WHO, BECAUSE OF THEIR 3469 02:10:26,077 --> 02:10:28,379 GENETIC PROFILE, MIGHT NOT 3470 02:10:28,379 --> 02:10:30,615 RESPOND OR THEY MIGHT HAVE AN 3471 02:10:30,615 --> 02:10:32,016 ADVERSE EFFECT AND WITH THESE 3472 02:10:32,016 --> 02:10:33,751 PEOPLE WHO ARE IN RED AND 3473 02:10:33,751 --> 02:10:35,753 PURPLE, YOU WILL WANT TO TREAT 3474 02:10:35,753 --> 02:10:38,656 WITH AN ALTERNATIVE DRUG OR DOSE 3475 02:10:38,656 --> 02:10:41,192 BUT GETTING TO THIS POPULATION 3476 02:10:41,192 --> 02:10:43,294 IN THE PINK AND RED IS ACTUALLY 3477 02:10:43,294 --> 02:10:44,595 A REALLY HARD PROCESS BECAUSE 3478 02:10:44,595 --> 02:10:45,897 YOU HAVE TO HAVE GENETIC 3479 02:10:45,897 --> 02:10:47,765 INFORMATION AVAILABLE. YOU HAVE 3480 02:10:47,765 --> 02:10:50,001 TO HAVE EVIDENCE BEHIND THE DRUG 3481 02:10:50,001 --> 02:10:51,469 GENE PAIRS AND THEN YOU HAVE TO 3482 02:10:51,469 --> 02:10:53,437 HAVE A WAY TO IMPLEMENT THIS IN 3483 02:10:53,437 --> 02:10:54,906 THE COMMUNITY. SO THAT'S 3484 02:10:54,906 --> 02:10:56,541 ACTUALLY ONE OF THE HARDEST 3485 02:10:56,541 --> 02:10:58,743 THINGS THAT WE'RE -- FOLKS ARE 3486 02:10:58,743 --> 02:11:00,278 TRAINED TO DO IN PRECISION 3487 02:11:00,278 --> 02:11:01,579 HEALTH SO ONE OF THE ENZYMES 3488 02:11:01,579 --> 02:11:03,714 THAT I -- A FAMILY OF ENZYMES 3489 02:11:03,714 --> 02:11:07,652 THAT I STUDY ARE THE CYTOCHROME 3490 02:11:07,652 --> 02:11:13,291 Q450 ANN EN -- ENZYMES. 3491 02:11:13,291 --> 02:11:14,325 THERE ARE 57 ENZYMES IN THE 3492 02:11:14,325 --> 02:11:16,627 HUMAN BODY THAT ARE INVOLVED IN 3493 02:11:16,627 --> 02:11:23,134 SOME TYPE OF DRUG METABOLISM 3494 02:11:23,134 --> 02:11:28,339 ABOUT 75% OF THE DRUGS THAT 3495 02:11:28,339 --> 02:11:33,344 PEOPLE TAKE TODAY ARE ME TABIZED 3496 02:11:33,344 --> 02:11:35,079 IN THIS GENE FAMILY. 3497 02:11:35,079 --> 02:11:35,713 AND INSERTIONS AND DELETIONS ARE 3498 02:11:35,713 --> 02:11:38,950 A BIG PART OF WHY WE SEE SOME 3499 02:11:38,950 --> 02:11:40,751 GENETIC VARIANCE IN HOW PEOPLE 3500 02:11:40,751 --> 02:11:43,788 RESPOND TO MEDICATIONS AND THEN 3501 02:11:43,788 --> 02:11:45,089 INTERESTINGLY THERE ARE ALSO 3502 02:11:45,089 --> 02:11:46,290 COPY NUMBER OF VARIATIONS. 3503 02:11:46,290 --> 02:11:50,494 SO WITH ONE OF THE MORE COMMON 3504 02:11:50,494 --> 02:11:54,532 ENZYMES WE SEE A LOT OF NOON 3505 02:11:54,532 --> 02:11:56,033 ALLELE I DIDN'T CARE HOMOLOGOUS 3506 02:11:56,033 --> 02:11:57,702 RECOMBINATION OCCURRING WHERE 3507 02:11:57,702 --> 02:12:00,571 YOU MIGHT GET HYBRIDS. SO 3508 02:12:00,571 --> 02:12:01,706 THEY'RE A REALLY INTERESTING 3509 02:12:01,706 --> 02:12:04,809 FAMILY TO STUDY SO IN TERMS OF 3510 02:12:04,809 --> 02:12:07,612 THE ACTUAL GENES SO THIS IS JUST 3511 02:12:07,612 --> 02:12:10,848 AN EXAMPLE OF 2D 6 I AM NOT 3512 02:12:10,848 --> 02:12:12,416 GOING TO GO TOO IN DEPTH BUT 3513 02:12:12,416 --> 02:12:13,918 IT'S A GENE CARTOON AND WITH 3514 02:12:13,918 --> 02:12:17,388 EACH, OR DIFFERENT ENZYMES, WITH 3515 02:12:17,388 --> 02:12:20,625 DIFFERENT VARIANTS, THESE NUKE 3516 02:12:20,625 --> 02:12:25,062 LOW TIDE CHANGES WILL CAUSE AN 3517 02:12:25,062 --> 02:12:26,831 IMMUNO ACID CHANGE AND A CHANGE 3518 02:12:26,831 --> 02:12:27,865 IN ENZYME ACTIVITY. 3519 02:12:27,865 --> 02:12:28,833 THIS ONE DOESN'T REALLY CHANGE 3520 02:12:28,833 --> 02:12:30,902 IT BUT IF WE GO BACK TO THIS 3521 02:12:30,902 --> 02:12:33,671 STAR TEN VARIANT IT DECREASES 3522 02:12:33,671 --> 02:12:34,438 ENZYME FUNCTION WHICH HAS 3523 02:12:34,438 --> 02:12:36,741 IMPLICATIONS FOR THE DOSAGE OF 3524 02:12:36,741 --> 02:12:38,142 THE MEDICATIONS,S OR THE 3525 02:12:38,142 --> 02:12:40,177 MEDICINES THAT ARE METABOLIZED 3526 02:12:40,177 --> 02:12:41,145 BY THIS ENZYME. 3527 02:12:41,145 --> 02:12:45,082 SO JUST A BIG PICTURE. AND THEN 3528 02:12:45,082 --> 02:12:47,084 WHEN WE THINK ABOUT THE 3529 02:12:47,084 --> 02:12:49,053 APPLICABILITY OF PHARMACOGENETIC 3530 02:12:49,053 --> 02:12:51,422 INFORMATION I WANTED TO GO TO 3531 02:12:51,422 --> 02:12:52,657 THIS STUDY THAT WAS PUBLISHED A 3532 02:12:52,657 --> 02:12:55,526 COUPLE YEARS AGO WHERE THEY DID 3533 02:12:55,526 --> 02:12:57,828 USE THE PHARMACOGENETIC 3534 02:12:57,828 --> 02:13:02,233 ALGORITHM BASED ON TWO GENES. D 3535 02:13:02,233 --> 02:13:06,170 4C 1 AND CYP 2C 9 AND THEY 3536 02:13:06,170 --> 02:13:10,174 LOOKED AT THE GENE IS THAT THE 3537 02:13:10,174 --> 02:13:13,411 US THE AND COMPARED TO IT TO 3538 02:13:13,411 --> 02:13:14,145 CLINICAL CARE. 3539 02:13:14,145 --> 02:13:15,479 FOR ONE OF THE GROUPS THEY FOUND 3540 02:13:15,479 --> 02:13:19,250 THAT THERE WAS A BENEFIT FOR 3541 02:13:19,250 --> 02:13:21,786 GENOTYPE GUIDE WARFARIN DOSING 3542 02:13:21,786 --> 02:13:24,956 AND WARFARIN IS A BLOOD THINNER 3543 02:13:24,956 --> 02:13:25,623 COMMONLY PRESCRIBED, ALSO KNOWN 3544 02:13:25,623 --> 02:13:28,626 AS COUMADIN. THEY FOUND THIS 3545 02:13:28,626 --> 02:13:31,228 PHENOTYPE WAS BENEFICIAL FOR 3546 02:13:31,228 --> 02:13:35,800 PEOPLE. AND THEN FOR COAG THAT 3547 02:13:35,800 --> 02:13:36,801 FOUND NO DIFFERENCE. 3548 02:13:36,801 --> 02:13:39,603 WHY DO YOU THINK WE HAVE THESE 3549 02:13:39,603 --> 02:13:40,271 CONFLICTING RESULTS? WELL, WHEN 3550 02:13:40,271 --> 02:13:43,074 YOU LOOK AT THE COMPOSITION OF 3551 02:13:43,074 --> 02:13:47,278 THE COHORTS, THE EU PAC WAS 3552 02:13:47,278 --> 02:13:54,185 PRIMARILY EUROPEAN DECENT COAGO 3553 02:13:54,185 --> 02:13:56,320 HAD REPRESENTATION. AND IN THIS 3554 02:13:56,320 --> 02:13:59,724 GENE, AFRICAN AMERICANS HAVE 3555 02:13:59,724 --> 02:14:00,124 LOW 3556 02:14:00,124 --> 02:14:02,526 LOWER FREQUENCY OF THE TWO 3557 02:14:02,526 --> 02:14:04,128 VARIETIES PUT IN THIS ALGORITHM. 3558 02:14:04,128 --> 02:14:08,699 AND NONE OF THE OTHER CYP 2C 9 3559 02:14:08,699 --> 02:14:09,900 WERE CONSIDERED IN THIS 3560 02:14:09,900 --> 02:14:10,901 ALGORITHM. 3561 02:14:10,901 --> 02:14:13,070 IT WAS EXCLUDING POTENTIALLY 3562 02:14:13,070 --> 02:14:15,039 IMPORTANT VARIANTS FOR A 3563 02:14:15,039 --> 02:14:16,607 SPECIFIC SUB GROUP AND SO THIS 3564 02:14:16,607 --> 02:14:19,276 IS A PART OF THE REASON WHY IT'S 3565 02:14:19,276 --> 02:14:24,648 SO IMPORTANT THAT WE LOOK AT 3566 02:14:24,648 --> 02:14:25,383 CHARACTERIZE VARIATION IN 3567 02:14:25,383 --> 02:14:27,385 DIFFERENT POPULATIONS. 3568 02:14:27,385 --> 02:14:29,720 POTENTIALLY, CLINICALLY THERE'S 3569 02:14:29,720 --> 02:14:32,390 THE POTENTIAL FOR PHENOTYPIC 3570 02:14:32,390 --> 02:14:34,759 CLASSIFICATION, THIS WILL END UP 3571 02:14:34,759 --> 02:14:36,494 CONTRIBUTING TO DISPARITIES AND 3572 02:14:36,494 --> 02:14:38,029 THEN THERE'S MISSED 3573 02:14:38,029 --> 02:14:41,065 OPPORTUNITIES FOR OPTIMIZING 3574 02:14:41,065 --> 02:14:43,768 CARE FOR PEOPLE. AND THE OTHER 3575 02:14:43,768 --> 02:14:49,306 PART MARK FOR IDENTIF OF MY WOR. 3576 02:14:49,306 --> 02:14:50,941 IT'S INTERESTING TO LOOK AT WHY 3577 02:14:50,941 --> 02:14:52,076 WE HAVE THE VARIATION THAT WE 3578 02:14:52,076 --> 02:14:54,712 DO. THIS IS LOOKING AT 3579 02:14:54,712 --> 02:14:55,913 POPULATIONS IN OCEANIA SO 3580 02:14:55,913 --> 02:14:59,350 LOOKING AT POLL NEESHA, MICRO 3581 02:14:59,350 --> 02:15:01,552 NEESHA IN DIFFERENT GEOGRAPHIC 3582 02:15:01,552 --> 02:15:04,088 REGIONS AND ETHNIC GROUPS. 3583 02:15:04,088 --> 02:15:07,591 BUT IT'S ANY -- THESE -- FOR 3584 02:15:07,591 --> 02:15:12,430 THIS CYP 2C 19 FOR METABOLIZER 3585 02:15:12,430 --> 02:15:15,800 STATUS IT VARIES FROM 71% IN 3586 02:15:15,800 --> 02:15:18,169 CERTAIN GROUPS TO 8 OR 7% IN 3587 02:15:18,169 --> 02:15:19,603 OTHER GROUPS. 3588 02:15:19,603 --> 02:15:21,739 AND A LOT OF THIS IS DRIVEN BY 3589 02:15:21,739 --> 02:15:25,776 THE FOUNDER EFFECT SO SMALL 3590 02:15:25,776 --> 02:15:29,680 POPULATIONS KEEPING -- OR -- IN 3591 02:15:29,680 --> 02:15:30,314 SMALL POPULATIONS SOME OF THE 3592 02:15:30,314 --> 02:15:32,516 VARIANTS -- THERE'LL BE A LOSS 3593 02:15:32,516 --> 02:15:34,351 OF GENETIC VARIANT THAT OCCURS 3594 02:15:34,351 --> 02:15:35,553 FROM A NEW POPULATION BEING 3595 02:15:35,553 --> 02:15:37,054 ESTABLISHED FROM A SMALLER 3596 02:15:37,054 --> 02:15:38,756 NUMBER OF PEOPLE OR SELECTIVE 3597 02:15:38,756 --> 02:15:39,690 PRESSURES. THERE MIGHT BE 3598 02:15:39,690 --> 02:15:40,724 THINGS IN THE ENVIRONMENT THAT 3599 02:15:40,724 --> 02:15:45,296 ARE BEING SELECTED POOR. THERE 3600 02:15:45,296 --> 02:15:47,264 MIGHT BE GEOGRAPHIC BARRIERS AS 3601 02:15:47,264 --> 02:15:49,900 WELL AND GENETIC DRIFT IS WHEN 3602 02:15:49,900 --> 02:15:52,503 NON-RANDOM DRIFT OCCURS DUE TO 3603 02:15:52,503 --> 02:15:53,838 SMALL POPULATION SIZE I THINK WE 3604 02:15:53,838 --> 02:15:56,407 SEE THIS ALL OVER THE WORLD WITH 3605 02:15:56,407 --> 02:15:58,676 THESE SUBSET OF ENZYMES AND IT'S 3606 02:15:58,676 --> 02:16:00,177 REALLY INTERESTING FROM MY 3607 02:16:00,177 --> 02:16:02,847 PERSPECTIVE TO LOOK AT WHY WE 3608 02:16:02,847 --> 02:16:07,785 SEE THESE CHANGES. IS THERE A 3609 02:16:07,785 --> 02:16:10,421 SELECTIVE ADVANTAGE OR IS THERE 3610 02:16:10,421 --> 02:16:11,489 ARCHAIC GENOMES THAT ARE 3611 02:16:11,489 --> 02:16:12,223 INVOLVED SO ONE OF THE -- 3612 02:16:12,223 --> 02:16:13,457 ANOTHER PAPER THAT I'M NOT GOING 3613 02:16:13,457 --> 02:16:16,427 TO TALK ABOUT TODAY, WE LOOKED 3614 02:16:16,427 --> 02:16:19,530 AT THESE VARIANTS IN NEANDERTHAL 3615 02:16:19,530 --> 02:16:21,398 INDIVIDUALS AND WE WERE ABLE TO 3616 02:16:21,398 --> 02:16:22,299 SEE THAT SOME OF THAT VARIATION 3617 02:16:22,299 --> 02:16:25,669 IS SHARED FROM A LONG TIME AGO. 3618 02:16:25,669 --> 02:16:28,205 WHY IS THIS VARIATION STAYING IN 3619 02:16:28,205 --> 02:16:31,075 THE POPULATION? SO THIS IS JUST 3620 02:16:31,075 --> 02:16:32,810 AN EXAMPLE. BUT IN ALL, I THINK 3621 02:16:32,810 --> 02:16:36,514 THAT A LOT OF THE WORK THAT I 3622 02:16:36,514 --> 02:16:38,549 HAVE DONE AND HAVE BEEN DOING 3623 02:16:38,549 --> 02:16:39,783 WITH COMMUNITIES IS -- WAS 3624 02:16:39,783 --> 02:16:41,819 REALLY A CALL TO ACTION TO ME. 3625 02:16:41,819 --> 02:16:46,223 THERE IS A DEFINITE BIAS IN WHO 3626 02:16:46,223 --> 02:16:47,992 WAS REPRESENTED IN GENOMIC AND 3627 02:16:47,992 --> 02:16:49,793 PHARMACOGENOMIC RESEARCH. THERE 3628 02:16:49,793 --> 02:16:53,164 IS A SHOCKING LACK OF INDIGENOUS 3629 02:16:53,164 --> 02:16:55,366 PH.D.S OR PRINCIPLE 3630 02:16:55,366 --> 02:16:57,201 INVESTIGATORS IN THE BIOMEDICAL 3631 02:16:57,201 --> 02:16:59,870 SCIENCES. CURRENTLY, THERE ARE 3632 02:16:59,870 --> 02:17:02,106 VERY FEW PRINCIPLE INVESTIGATORS 3633 02:17:02,106 --> 02:17:04,508 WHO HAVE RESEARCH LABS, MUCH 3634 02:17:04,508 --> 02:17:07,077 LESS WET LABS AND ARE ABLE TO DO 3635 02:17:07,077 --> 02:17:10,247 SOME OF THIS WORK WITH TRIBAL 3636 02:17:10,247 --> 02:17:13,150 COMMUNITIES. SO IT REALLY 3637 02:17:13,150 --> 02:17:14,885 BECAME A CALL OR A REALIZATION 3638 02:17:14,885 --> 02:17:16,820 THAT WE -- I HAVE TO TRY TO 3639 02:17:16,820 --> 02:17:18,322 INCREASE THE NUMBER OF 3640 02:17:18,322 --> 02:17:21,926 INDIGENOUS CALLERS IN THE 3641 02:17:21,926 --> 02:17:22,593 GENOMIC WORKFORCE AND THEN ONE 3642 02:17:22,593 --> 02:17:23,827 WAY TO DO THIS IS WORING WITH 3643 02:17:23,827 --> 02:17:26,096 COMMUNITIES AS PARTNERS BUT ALSO 3644 02:17:26,096 --> 02:17:28,732 INVOLVING MORE OF THE 3645 02:17:28,732 --> 02:17:32,903 COMMUNITIES IN RESEARCH IN THE 3646 02:17:32,903 --> 02:17:36,373 ACTUAL -- START OR DOING THE 3647 02:17:36,373 --> 02:17:38,108 RESEARCH. SO NOW I'M GOING 3648 02:17:38,108 --> 02:17:39,510 SWITCH GEARS INTO SOME OF THE 3649 02:17:39,510 --> 02:17:41,245 ETHICAL RESEARCH APPROACHES THAT 3650 02:17:41,245 --> 02:17:43,747 I THINK OF AS I DO MY RESEARCH 3651 02:17:43,747 --> 02:17:45,149 AND I DO THIS -- I GO THROUGH 3652 02:17:45,149 --> 02:17:46,884 THIS PROCESS WITH EVERY PROJECT 3653 02:17:46,884 --> 02:17:48,819 THAT I DO AND THROUGHOUT THE 3654 02:17:48,819 --> 02:17:51,188 RESEARCH PROJECT I ALSO CHECK 3655 02:17:51,188 --> 02:17:52,256 MYSELF AND THINK ABOUT THESE 3656 02:17:52,256 --> 02:17:53,691 QUESTIONS. AM I DOING THIS? 3657 02:17:53,691 --> 02:17:55,759 SHOULD I HAVE DONE THIS? HOW 3658 02:17:55,759 --> 02:17:58,028 CAN I DO IT BETTER? SO I THINK 3659 02:17:58,028 --> 02:17:59,863 WHEN WE THINK ABOUT WHAT MEANS 3660 02:17:59,863 --> 02:18:03,267 TO BE AN ETHICAL RESEARCHER, 3661 02:18:03,267 --> 02:18:05,803 WHAT SITUATES OUR ETHICAL NORMS 3662 02:18:05,803 --> 02:18:06,470 AND BELIEFS? 3663 02:18:06,470 --> 02:18:09,306 I THINK THE NOTIONS OF GOOD AND 3664 02:18:09,306 --> 02:18:11,942 BAD VARY ACROSS COMMUNITIES. 3665 02:18:11,942 --> 02:18:13,644 BIOETHICS IS A STUDY OF ETHICS 3666 02:18:13,644 --> 02:18:16,146 IN MEDICINE AND RESEARCH AND 3667 02:18:16,146 --> 02:18:18,849 OFTEN GUIDELINES AND BEST 3668 02:18:18,849 --> 02:18:20,150 PRACTICES ARE NEED TO ENSURE 3669 02:18:20,150 --> 02:18:23,020 THAT MINIMUM STANDARDS ARE 3670 02:18:23,020 --> 02:18:25,122 IMPLEMENTED. SO I WON'T TALK A 3671 02:18:25,122 --> 02:18:27,224 LOT ABOUT THIS WORK. SO I DO 3672 02:18:27,224 --> 02:18:28,592 RESEARCH WITH CONTEMPORARY 3673 02:18:28,592 --> 02:18:29,893 INDIGENOUS PEOPLES. I ALSO DO 3674 02:18:29,893 --> 02:18:33,197 RESEARCH INVOLVING ANCESTORS. 3675 02:18:33,197 --> 02:18:36,333 SOME OF THE PAPER THAT I SHARED 3676 02:18:36,333 --> 02:18:39,837 WILL GIVE YOU MORE IDEAS ABOUT 3677 02:18:39,837 --> 02:18:42,873 WHAT IT MEANS BUT EITHER -- 3678 02:18:42,873 --> 02:18:44,041 WHETHER I'M WORKING WITH 3679 02:18:44,041 --> 02:18:46,176 CONTEMPORARY INDIGENOUS PEOPLES 3680 02:18:46,176 --> 02:18:48,178 OR ANCESTORS A LOT OF THE 3681 02:18:48,178 --> 02:18:49,613 QUESTIONS THAT I THINK OF -- AND 3682 02:18:49,613 --> 02:18:50,914 HOW I APPROACH MY RESEARCH ARE 3683 02:18:50,914 --> 02:18:54,952 THE SAME. SO I REALLY LOVE THIS 3684 02:18:54,952 --> 02:18:56,520 QUOTE BY DR. KIM. IF YOU'RE 3685 02:18:56,520 --> 02:18:59,590 GOING TO WORK WITH INDIGENOUS 3686 02:18:59,590 --> 02:19:00,691 COMMUNITIES, YOU HAVE -- ON 3687 02:19:00,691 --> 02:19:01,859 GENETICS YOU HAVE TO BE WILLING 3688 02:19:01,859 --> 02:19:08,299 TO MAKE LIFELONG RELATIONSHIPS 3689 02:19:08,299 --> 02:19:13,170 SO CBPR IS COMMUNITY BASED 3690 02:19:13,170 --> 02:19:14,271 PARTICIPATORY RESEARCH. IT'S A 3691 02:19:14,271 --> 02:19:17,574 COLLABORATIVE APPROACH TO 3692 02:19:17,574 --> 02:19:19,076 RESEARCH THAT INVOLVES ALL 3693 02:19:19,076 --> 02:19:19,777 COMMUNITY PARTNERS IN THE 3694 02:19:19,777 --> 02:19:22,646 RESEARCH PROCESS. AND IT 3695 02:19:22,646 --> 02:19:25,416 RECOGNIZES THE STRENGTHS THAT 3696 02:19:25,416 --> 02:19:28,886 EACH BRINGS. SO COMMUNITY 3697 02:19:28,886 --> 02:19:29,920 RESEARCH BEGINS WITH A RESEARCH 3698 02:19:29,920 --> 02:19:31,989 TOPIC OF IMPORTANCE TO THE 3699 02:19:31,989 --> 02:19:34,758 COMMUNITY. WITH THE AIM OF 3700 02:19:34,758 --> 02:19:35,426 COMBINING KNOWLEDGE AND ACTION 3701 02:19:35,426 --> 02:19:37,728 FOR SOCIAL CHANGE TO IMPROVE 3702 02:19:37,728 --> 02:19:39,763 COMMUNITY HEALTH AND ELIMINATE 3703 02:19:39,763 --> 02:19:41,732 HEALTH DISPARITIES. SORRY, I 3704 02:19:41,732 --> 02:19:44,735 KEEP PRESSING THE WRONG BUTTON. 3705 02:19:44,735 --> 02:19:46,870 SO I THINK ONE THING THAT I 3706 02:19:46,870 --> 02:19:49,440 WOULD LOVE EVERYONE TO THINK 3707 02:19:49,440 --> 02:19:50,841 ABOUT IS WHAT WOULD YOUR STUDY 3708 02:19:50,841 --> 02:19:54,311 LOOK LIKE? WHEN COMMUNITY'S 3709 02:19:54,311 --> 02:19:56,347 INVOLVED OR WHAT DOES YOUR STUDY 3710 02:19:56,347 --> 02:19:57,247 LOOK LIKE AND THIS CAN BE 3711 02:19:57,247 --> 02:19:58,849 WHATEVER YOU'RE STUDYING IF IT'S 3712 02:19:58,849 --> 02:20:02,152 PUBLIC HEALTH, IF IT'S 3713 02:20:02,152 --> 02:20:05,155 QUALITATIVE OR IF YOU'RE DOING 3714 02:20:05,155 --> 02:20:06,056 GENETIC RESEARCH HOW DO YOU 3715 02:20:06,056 --> 02:20:08,292 INVOLVE YOUR COMMUNITY MEMBERS? 3716 02:20:08,292 --> 02:20:11,762 SO RECENTLY, THERE HAVE BEEN 3717 02:20:11,762 --> 02:20:14,164 MANY COMMUNITIES, THAT AFFECT 3718 02:20:14,164 --> 02:20:15,466 RESEARCH GUIDELINES THAT HAVE 3719 02:20:15,466 --> 02:20:17,000 COME OUT. THESE -- THIS IS A 3720 02:20:17,000 --> 02:20:18,769 LITTLE BIT OLDER BUT THESE ARE A 3721 02:20:18,769 --> 02:20:24,375 COUPLE THAT I LIKE TO HIGHLIGHT 3722 02:20:24,375 --> 02:20:29,646 AFTERNOON R H 3 AFRICA HAS A 3723 02:20:29,646 --> 02:20:30,414 FRAMEWORK. WE HAVE A GOOD 3724 02:20:30,414 --> 02:20:32,383 EXAMPLE OF GUIDELINES THAT WERE 3725 02:20:32,383 --> 02:20:37,488 PRODUCED, CREATED AND MADE BY 3726 02:20:37,488 --> 02:20:39,156 MARY INDIVIDUALS SO IT BRINGS 3727 02:20:39,156 --> 02:20:41,458 DOWN WHAT GENOMIC RESEARCH LOOKS 3728 02:20:41,458 --> 02:20:43,460 LIKE FROM THE MAY OR RI 3729 02:20:43,460 --> 02:20:43,794 PERSPECTIVE. 3730 02:20:43,794 --> 02:20:45,996 AND THEN THIS OTHER PUBLICATION 3731 02:20:45,996 --> 02:20:48,198 MY COLLEAGUES AND I PUBLISHED 3732 02:20:48,198 --> 02:20:56,707 BACK IN 2018. IN THIS FRAMEWORK 3733 02:20:56,707 --> 02:20:58,842 WE LAY OUT ETHICAL PRINCIPLES, 3734 02:20:58,842 --> 02:21:00,043 SIX PRINCIPLES THAT ANYONE CAN 3735 02:21:00,043 --> 02:21:03,280 USE IN THEIR RESEARCH. AND I 3736 02:21:03,280 --> 02:21:05,082 WILL GO THROUGH THIS A LITTLE 3737 02:21:05,082 --> 02:21:07,551 BIT MORE AFTER I HIGHLIGHT SOME 3738 02:21:07,551 --> 02:21:09,420 OF THE OTHER UPCOMING STUDIES 3739 02:21:09,420 --> 02:21:12,656 AND THEN RECENTLY THERE'S BEEN A 3740 02:21:12,656 --> 02:21:19,763 LOT OF WORK DONE PARTICULARLY IN 3741 02:21:19,763 --> 02:21:22,533 GENOMIC RESEARCH AND PRECISION 3742 02:21:22,533 --> 02:21:23,534 MEDICINE. ONE OF THE PRINCIPLES 3743 02:21:23,534 --> 02:21:27,404 THAT CAME OUT WHERE THE CARE 3744 02:21:27,404 --> 02:21:29,006 PRINCIPLES SO THIS IS SELECTION, 3745 02:21:29,006 --> 02:21:29,706 OWNERSHIP, AND APPLICATION OF 3746 02:21:29,706 --> 02:21:32,443 DATA AND SPECIMENS. SO THE CARE 3747 02:21:32,443 --> 02:21:34,778 PRINCIPLES FOR INDIGENOUS DATA 3748 02:21:34,778 --> 02:21:35,546 GOVERNANCE, THAT'S A REALLY 3749 02:21:35,546 --> 02:21:38,682 GREAT PAPER TO READ AND THERE IS 3750 02:21:38,682 --> 02:21:40,684 A -- I'M NOT SURE IF FOLKS HAVE 3751 02:21:40,684 --> 02:21:43,153 HEARD OF THE FAIR PRINCIPLES 3752 02:21:43,153 --> 02:21:44,521 ABOUT DATA STEWARDSHIP BUT 3753 02:21:44,521 --> 02:21:47,558 THERE'S A PAPER THAT LINKS THE 3754 02:21:47,558 --> 02:21:48,492 CARE AND FAIR PRINCIPLES 3755 02:21:48,492 --> 02:21:49,827 TOGETHER WHICH I FIND REALLY 3756 02:21:49,827 --> 02:21:51,762 GREAT AND THERE'S OTHER STUDIES 3757 02:21:51,762 --> 02:21:55,766 THAT THINK OF DNA ON LOAN. OR 3758 02:21:55,766 --> 02:21:59,436 IN RELATION TO DATA STEWARDSHIP 3759 02:21:59,436 --> 02:22:02,339 THERE LAURA ARBOR'S GROUP IN 3760 02:22:02,339 --> 02:22:04,541 CANADA BUT I ALSO WANTED TO 3761 02:22:04,541 --> 02:22:06,743 HIGHLIGHT THE PAPER THAT MY 3762 02:22:06,743 --> 02:22:10,581 COLLEAGUES AND I WERE ABLE TO 3763 02:22:10,581 --> 02:22:11,014 PUT TOGETHER. 3764 02:22:11,014 --> 02:22:12,149 WITH THIS PAPER WE LIKE TO START 3765 02:22:12,149 --> 02:22:15,152 FROM THE MIDDLE. SO 3766 02:22:15,152 --> 02:22:16,453 UNDERSTANDING TRIBAL SOVEREIGNTY 3767 02:22:16,453 --> 02:22:17,588 AND RESEARCH REGULATIONS WITH 3768 02:22:17,588 --> 02:22:19,256 THE COMMUNITIES THAT YOU'RE 3769 02:22:19,256 --> 02:22:21,091 WORKING WITH BEFORE STARTING AND 3770 02:22:21,091 --> 02:22:23,660 THEN GOING OUTWARDS TO ENGAGING 3771 02:22:23,660 --> 02:22:25,796 THE COMMUNITY. AND THEN MAKING 3772 02:22:25,796 --> 02:22:27,498 SURE THAT YOU'RE CULTURALLY 3773 02:22:27,498 --> 02:22:31,935 COMPETENT AND THEN IMPROVING 3774 02:22:31,935 --> 02:22:35,439 TRANSPARENCY IN EVERYTHING THAT 3775 02:22:35,439 --> 02:22:37,808 YOU'RE DOING. NOT JUST IN THE 3776 02:22:37,808 --> 02:22:40,410 STARTING STUDY BUT IN INFORMED 3777 02:22:40,410 --> 02:22:41,345 CONSENT. SO INVOLVING MEMBERS 3778 02:22:41,345 --> 02:22:44,515 OF THE COMMUNITY AND THEN 3779 02:22:44,515 --> 02:22:45,382 DISTRIBUTING KNOWLEDGE IN 3780 02:22:45,382 --> 02:22:46,817 DIFFERENT WAYS. AND THEN 3781 02:22:46,817 --> 02:22:48,151 THROUGHOUT WE HAVE THESE 3782 02:22:48,151 --> 02:22:52,856 PRINCIPLES OF RESPECT, EQUITY, 3783 02:22:52,856 --> 02:22:54,658 BENEFICENCE AND RECIPROCITY. SO 3784 02:22:54,658 --> 02:22:56,260 WITH THIS, I'M JUST GOING TO 3785 02:22:56,260 --> 02:22:58,228 START FROM THE BEGINNING AND 3786 02:22:58,228 --> 02:22:59,463 TELL PEOPLE HOW I APPROACH THIS 3787 02:22:59,463 --> 02:23:01,265 RESEARCH. SO IN ACKNOWLEDGES 3788 02:23:01,265 --> 02:23:06,236 SOVEREIGNTY AND RESEARCH 3789 02:23:06,236 --> 02:23:07,170 RELATIONS, WE'RE ASKING THAT 3790 02:23:07,170 --> 02:23:10,574 BOTH TRIBAL GROUPS AND 3791 02:23:10,574 --> 02:23:13,610 INDIVIDUALS CONSENT ALSO IF 3792 02:23:13,610 --> 02:23:14,278 YOU'RE WORKING WITH URBAN 3793 02:23:14,278 --> 02:23:15,913 POPULATIONS IT BECOMES A LITTLE 3794 02:23:15,913 --> 02:23:18,382 HARDER BECAUSE OFTEN THERE'S NOT 3795 02:23:18,382 --> 02:23:20,851 A SINGLE ENTITY THAT CAN APPROVE 3796 02:23:20,851 --> 02:23:24,888 OR DISAPPROVE OF A STUDY. FOR 3797 02:23:24,888 --> 02:23:26,990 EXAMPLE I'M GOING TO HIGHLIGHT 3798 02:23:26,990 --> 02:23:30,360 THE PHARMACOGENOMICS RESEARCH 3799 02:23:30,360 --> 02:23:31,762 NETWORK. SO WITHIN THIS 3800 02:23:31,762 --> 02:23:33,297 PARTNERSHIP THEY HAVE THREE 3801 02:23:33,297 --> 02:23:35,599 TRIBAL PARTNERS LISTED HERE AND 3802 02:23:35,599 --> 02:23:37,267 THEN WITH THE OVERSIGHT APPROVAL 3803 02:23:37,267 --> 02:23:39,536 PROCESS FOR EVERY STUDY THAT WAS 3804 02:23:39,536 --> 02:23:41,972 DONE AS A PART OF THIS LARGER 3805 02:23:41,972 --> 02:23:44,441 GRANT THEY WENT THROUGH THE 3806 02:23:44,441 --> 02:23:46,276 ALASKA AREA IRB AND THEN THE 3807 02:23:46,276 --> 02:23:49,780 OVERSIGHT COMMITTEE OF THE 3808 02:23:49,780 --> 02:23:53,884 FOUNDATION AND THEN FOR THE YK 3809 02:23:53,884 --> 02:23:54,518 HEALTH CORPORATION THEY WENT 3810 02:23:54,518 --> 02:23:55,652 THROUGH MULTIPLE LEVELS OF 3811 02:23:55,652 --> 02:23:57,487 REVIEW AND THIS IS FOR THE STUDY 3812 02:23:57,487 --> 02:23:58,956 BUT ALSO FOR ANY PUBLICATIONS 3813 02:23:58,956 --> 02:24:02,259 AND PRESENTATIONS THAT HAPPENED. 3814 02:24:02,259 --> 02:24:04,895 AND THEN SAME WITH THE TRIBE IN 3815 02:24:04,895 --> 02:24:08,398 MONTANA THERE WERE MULTIPLE 3816 02:24:08,398 --> 02:24:09,433 LEVELS OF REVIEW FROM THE 3817 02:24:09,433 --> 02:24:10,634 COMMUNITY BEFORE THIS GOT 3818 02:24:10,634 --> 02:24:14,137 APPROVED OR STARTED AND THEN FOR 3819 02:24:14,137 --> 02:24:15,739 COMMUNITY ENGAGEMENT THIS IS 3820 02:24:15,739 --> 02:24:17,641 REALLY TALKING ABOUT BUILDING 3821 02:24:17,641 --> 02:24:19,543 LONG-TERM RELATIONSHIPS. AND 3822 02:24:19,543 --> 02:24:22,512 HAVING SOME TYPE OF ENGAGEMENT 3823 02:24:22,512 --> 02:24:24,314 PLANNED. ONE REALLY GOOD WAY TO 3824 02:24:24,314 --> 02:24:26,750 DO THIS IS TO HAVE COMMUNITY 3825 02:24:26,750 --> 02:24:29,152 ADVISORY GROUPS. SO, AND ALL -- 3826 02:24:29,152 --> 02:24:30,854 MOST OF THE STUDIES THAT I DO, I 3827 02:24:30,854 --> 02:24:33,724 HAVE A COMMUNITY ADVISORY GROUP. 3828 02:24:33,724 --> 02:24:36,293 THIS CAN BE ANYWHERE FROM FIVE 3829 02:24:36,293 --> 02:24:39,663 PEOPLE TO ONE OF MY GROUPS. WE 3830 02:24:39,663 --> 02:24:41,398 HAVE 30 COMMUNITY MEMBERS IN THE 3831 02:24:41,398 --> 02:24:45,002 ADVISORY GROUP. SO I THINK IT 3832 02:24:45,002 --> 02:24:48,372 JUST DEPENDS ON WHAT LEVEL OF 3833 02:24:48,372 --> 02:24:53,910 INTEREST AND IF YOU'RE ABLE TO 3834 02:24:53,910 --> 02:24:55,145 ORGANIZE FOLKS BUT OFTEN THE 3835 02:24:55,145 --> 02:24:56,880 COMMUNITY ADVISORY GROUP 3836 02:24:56,880 --> 02:24:58,915 MEETINGS ARE THE BEST PART OF MY 3837 02:24:58,915 --> 02:25:00,317 JOB. BECAUSE I GET TO CONNECT 3838 02:25:00,317 --> 02:25:02,853 WITH COMMUNITIES, LEARN, AND 3839 02:25:02,853 --> 02:25:09,092 TALK ABOUT RESEARCH TOGETHER. 3840 02:25:09,092 --> 02:25:10,861 SO THE OTHER CULTURAL 3841 02:25:10,861 --> 02:25:12,362 COMPETENCY, SO INTEGRATING 3842 02:25:12,362 --> 02:25:13,864 CULTURAL AND TRADITIONAL 3843 02:25:13,864 --> 02:25:16,099 KNOWLEDGE. TAKING THE VIEWS AND 3844 02:25:16,099 --> 02:25:17,634 PERSPECTIVES OF TRIBAL MEMBERS 3845 02:25:17,634 --> 02:25:18,735 INTO CONSIDERATION. AND THEN 3846 02:25:18,735 --> 02:25:21,505 ALSO HAVING REVIEWED BY THE IRB 3847 02:25:21,505 --> 02:25:24,107 AND COMMUNITY RESEARCHERS. SO 3848 02:25:24,107 --> 02:25:25,742 WITH ONE OF THE PROJECTS THAT I 3849 02:25:25,742 --> 02:25:29,780 WAS LUCKY ENOUGH TO BE A PART OF 3850 02:25:29,780 --> 02:25:31,615 WAS WITH THE SOUTH CENTRAL 3851 02:25:31,615 --> 02:25:34,918 FOUNDATION BEFORE WE -- WE MOVED 3852 02:25:34,918 --> 02:25:38,121 FORWARD WITH DOING AN IN-DEPTH 3853 02:25:38,121 --> 02:25:41,158 ANALYSIS OF THE CYP GENE ONE OF 3854 02:25:41,158 --> 02:25:43,260 THE THINGS WE DID FIRST WAS 3855 02:25:43,260 --> 02:25:46,530 EXPLORING THE PERCEPTIONS BEFORE 3856 02:25:46,530 --> 02:25:48,198 EMBARKING ON THIS PROJECT SO WE 3857 02:25:48,198 --> 02:25:50,367 DID A QUALITATIVE STUDY ON 3858 02:25:50,367 --> 02:25:55,539 PATIENTS, PROVIDERS AND LEADERS 3859 02:25:55,539 --> 02:25:58,675 REGARDING FARM COY -- 3860 02:25:58,675 --> 02:26:00,444 PHARMACOGENETICS USED IN TOBACCO 3861 02:26:00,444 --> 02:26:02,846 CESSATION RESEARCH. A LOT OF 3862 02:26:02,846 --> 02:26:04,347 THOSE WANTED COLLABORATION WITH 3863 02:26:04,347 --> 02:26:06,349 EXISTING TRIBAL PROGRAMS AND 3864 02:26:06,349 --> 02:26:07,551 WANTED THEIR RESULTS BACK. 3865 02:26:07,551 --> 02:26:11,521 SO THIS IS ONE WAY WE CAN DO 3866 02:26:11,521 --> 02:26:12,889 THIS BEFORE EMBARKING ON A 3867 02:26:12,889 --> 02:26:14,925 PROJECT. TRANSPARENCY, JUST 3868 02:26:14,925 --> 02:26:16,493 MAKING SURE THAT THE CONSENT AND 3869 02:26:16,493 --> 02:26:25,702 THE PROCESS ARE SHARED AND 3870 02:26:25,702 --> 02:26:27,137 DETAILED MAKING SURE STORAGE OF 3871 02:26:27,137 --> 02:26:28,572 DATA IS ADDRESSED AND MADE CLEAR 3872 02:26:28,572 --> 02:26:30,540 TO THE COMMUNITY AND ALSO FUTURE 3873 02:26:30,540 --> 02:26:34,377 USE OF DATA AND SAMPLES SO THIS 3874 02:26:34,377 --> 02:26:36,146 WAS AN EXAMPLE OF SOME OF THE 3875 02:26:36,146 --> 02:26:38,348 LANGUAGE USED IN AN INFORMED 3876 02:26:38,348 --> 02:26:41,752 CONSENT THAT WAS ACTUALLY USED. 3877 02:26:41,752 --> 02:26:47,457 IT'S ANONYMISED HERE BUT IT SAYS 3878 02:26:47,457 --> 02:26:49,659 CLEARLY THAT YOUR SAMPLES BELONG 3879 02:26:49,659 --> 02:26:53,663 TO YOU AND WILL BE STORED. 3880 02:26:53,663 --> 02:26:58,001 SAMPLES WILL BE SENT TO THIS 3881 02:26:58,001 --> 02:27:00,337 PLACE FOR ANALYSIS. IT'S VERY 3882 02:27:00,337 --> 02:27:05,242 CLEAR WHAT HAPPENS TO THE AMPLE 3883 02:27:05,242 --> 02:27:07,644 -- SAMPLE AND IT TELLS THEM HOW 3884 02:27:07,644 --> 02:27:10,447 LONG YOU KEEP THE SAMPLES. AND 3885 02:27:10,447 --> 02:27:13,416 WHAT WILL HAPPEN AFTER. AND 3886 02:27:13,416 --> 02:27:14,217 CAPACITY BUILDING, MAKING SURE 3887 02:27:14,217 --> 02:27:16,286 THAT YOU'RE TRYING TO INCLUDE 3888 02:27:16,286 --> 02:27:18,421 OTHERS AND DIVERSIFYING THE 3889 02:27:18,421 --> 02:27:19,756 WORKFORCE, DOING COLLABORATIVE 3890 02:27:19,756 --> 02:27:22,125 ANALYSIS AND THEN ALSO SHARING 3891 02:27:22,125 --> 02:27:25,796 COAUTHORSHIP WITH COMMUNITY 3892 02:27:25,796 --> 02:27:27,664 MEMBERS AS WELL AS RESEARCHERS. 3893 02:27:27,664 --> 02:27:30,100 ONE WAY I LIKE TO DO THIS AND I 3894 02:27:30,100 --> 02:27:32,369 AM A LONG TIME FACULTY MEMBER 3895 02:27:32,369 --> 02:27:33,804 WITH THE SUMMER INTERNSHIP FOR 3896 02:27:33,804 --> 02:27:37,340 INDIGENOUS PEOPLES IN GENOMICS 3897 02:27:37,340 --> 02:27:38,875 AT THAT WORKSHOP WE'RE ABLE TO 3898 02:27:38,875 --> 02:27:42,479 DO HANDS-ON TRAINING IN 3899 02:27:42,479 --> 02:27:44,347 GENOMICS. WE TALK ABOUT 3900 02:27:44,347 --> 02:27:47,517 DIFFERENT ELSI ISSUES. WE TALK 3901 02:27:47,517 --> 02:27:49,519 ABOUT DIFFERENT KNOWLEDGE IN 3902 02:27:49,519 --> 02:27:51,321 DECOLONIZING SCIENCE AND THIS 3903 02:27:51,321 --> 02:27:53,523 WORKSHOP HAS BEEN AROUND SINCE 3904 02:27:53,523 --> 02:27:55,759 2011 AND MANY OF MY TRIBAL 3905 02:27:55,759 --> 02:27:58,895 RESEARCH PARTNERS HAVE ATTENDED 3906 02:27:58,895 --> 02:27:59,863 SING BECAUSE IT WAS A GREAT WAY 3907 02:27:59,863 --> 02:28:02,499 TO HAVE THEM LEARN MORE ABOUT 3908 02:28:02,499 --> 02:28:04,467 GENOMICS BUT ALSO ENGAGE IN 3909 02:28:04,467 --> 02:28:05,836 DISCUSSION WITH OTHER TRIBAL 3910 02:28:05,836 --> 02:28:09,272 COMMUNITY MEMBERS. SO OFTEN WE 3911 02:28:09,272 --> 02:28:13,677 HAVE ABOUT 20 PEOPLE WHO ATTEND 3912 02:28:13,677 --> 02:28:15,679 EVERY YEAR AND THESE INDIVIDUALS 3913 02:28:15,679 --> 02:28:17,747 ARE ALL HAVE DIFFERENT TRIBAL 3914 02:28:17,747 --> 02:28:18,815 INDIGENOUS COMMUNITIES AROUND 3915 02:28:18,815 --> 02:28:19,883 THE U.S. AND AROUND THE WORLD SO 3916 02:28:19,883 --> 02:28:23,153 IT'S A REALLY GREAT WAY TO 3917 02:28:23,153 --> 02:28:24,654 SUPPORT CAPACITY BUILDING AND 3918 02:28:24,654 --> 02:28:27,490 THEN ALSO INFORM PEOPLE OF WHAT 3919 02:28:27,490 --> 02:28:31,328 WE'RE DOING. AND SING HAS 3920 02:28:31,328 --> 02:28:32,162 ACTUALLY CROSSED INTERNATIONAL 3921 02:28:32,162 --> 02:28:36,600 WATERS NOW SO THERE'S AN SING IN 3922 02:28:36,600 --> 02:28:41,071 NEW ZEALAND, THERE'S AN SING 3923 02:28:41,071 --> 02:28:44,241 AUSTRALIA CANADA. THOUGH I 3924 02:28:44,241 --> 02:28:47,344 THINK IT GOES UNDER A DIFFERENT 3925 02:28:47,344 --> 02:28:47,544 NAME. 3926 02:28:47,544 --> 02:28:50,046 FROM THE ORIGINAL SING IN THE U 3927 02:28:50,046 --> 02:28:52,682 SA ALL THOSE OTHER GROUPS HAVE 3928 02:28:52,682 --> 02:28:55,652 USED SING IN THEIR OWN WAY AND 3929 02:28:55,652 --> 02:28:56,419 CREATED THEIR OWN SHOPS FOR 3930 02:28:56,419 --> 02:29:00,123 CAPACITY BUILDING. AND THEN 3931 02:29:00,123 --> 02:29:01,725 THINKING ABOUT KNOWLEDGE AND 3932 02:29:01,725 --> 02:29:03,493 DISTRIBUTING KNOWLEDGE. ONLY 3933 02:29:03,493 --> 02:29:06,863 VERY FEW PEOPLE I FOUND FROM THE 3934 02:29:06,863 --> 02:29:12,736 COMMUNITY ACTUALLY READ YOUR -- 3935 02:29:12,736 --> 02:29:16,206 THE ACADEMIC PUBLICATION SO IT'S 3936 02:29:16,206 --> 02:29:17,107 IMPORTANT TO MAKE IT AVAILABLE 3937 02:29:17,107 --> 02:29:18,808 IN DIFFERENT AREA. AS PART OF 3938 02:29:18,808 --> 02:29:22,279 MY RESEARCH, OUR RESEARCH TEAM 3939 02:29:22,279 --> 02:29:24,848 HAS PRESENTED AT TRIBAL 3940 02:29:24,848 --> 02:29:27,550 COMMUNITY MEETINGS. WE HAVE 3941 02:29:27,550 --> 02:29:30,787 DONE FORMS ON THE LOCAL NAVAJO 3942 02:29:30,787 --> 02:29:32,622 RADIO STATION. AND ALSO I KNOW 3943 02:29:32,622 --> 02:29:36,026 OTHER COLLEAGUES HAVE CREATED 3944 02:29:36,026 --> 02:29:36,459 PAMPHLETS. 3945 02:29:36,459 --> 02:29:37,794 AND PUT THINGS ON SOCIAL MEDIA 3946 02:29:37,794 --> 02:29:42,732 TO MAKE IT MORE EASILY D 3947 02:29:42,732 --> 02:29:44,834 DIGESTIBLE. THESE ARE SOME 3948 02:29:44,834 --> 02:29:49,139 IDEAS ON HOW PEOPLE CAN WORK 3949 02:29:49,139 --> 02:29:50,607 WITH COMMUNITIES SO THAT THE 3950 02:29:50,607 --> 02:29:51,741 KNOWLEDGE IS SHARED AND PEOPLE 3951 02:29:51,741 --> 02:29:53,310 ARE EXCITED ABOUT THE RESEARCH 3952 02:29:53,310 --> 02:29:54,244 AND DON'T FEEL LIKE THEY'RE JUST 3953 02:29:54,244 --> 02:29:56,846 BEING USED AS A PART OF THE 3954 02:29:56,846 --> 02:30:00,450 RESEARCH PROCESS. SO IN 3955 02:30:00,450 --> 02:30:01,217 PHARMACOGENOMICS SPECIFICALLY I 3956 02:30:01,217 --> 02:30:07,357 THINK SPECIFICALLY THAT THE 3957 02:30:07,357 --> 02:30:08,058 FUTURE OF PHARMACOGENOMICS IS 3958 02:30:08,058 --> 02:30:09,359 BROUGHT. WE HAVE A LOT OF 3959 02:30:09,359 --> 02:30:10,460 DIFFERENT INITIATIVES HAPPENING. 3960 02:30:10,460 --> 02:30:15,765 ONE OF WHICH I'M SUPER PRUDE 3961 02:30:15,765 --> 02:30:18,501 PROUD OF HERE IS THE CONSORTIUM. 3962 02:30:18,501 --> 02:30:22,872 THE FIRST INSTITUTE LED BY 3963 02:30:22,872 --> 02:30:23,506 INDIGENOUS SCIENTISTS AND THEY 3964 02:30:23,506 --> 02:30:32,983 ARE ABLE TO STORE DATA, STORE 3965 02:30:32,983 --> 02:30:34,217 BIOSPECIMENS ON TRIBAL LANDS. 3966 02:30:34,217 --> 02:30:36,453 SO IF YOU'RE INTERESTED HERE IS 3967 02:30:36,453 --> 02:30:37,787 THE DIRECTOR. THE OTHER 3968 02:30:37,787 --> 02:30:39,189 INITIATIVE THAT I HAVE BEEN 3969 02:30:39,189 --> 02:30:41,758 WORKING WITH IS DR. ERICA AT THE 3970 02:30:41,758 --> 02:30:44,861 UNIVERSITY OF MONTANA. SHE HAS 3971 02:30:44,861 --> 02:30:45,729 THE PRECISION MEDICINE PROJECT 3972 02:30:45,729 --> 02:30:47,263 WHERE THEY ARE TARGETING RURAL 3973 02:30:47,263 --> 02:30:48,765 AND INDIGENOUS COMMUNITIES AND 3974 02:30:48,765 --> 02:30:50,934 TRYING TO IMPLEMENT PRECISION 3975 02:30:50,934 --> 02:30:54,637 MEDICINE IN THOSE COMMUNITIES. 3976 02:30:54,637 --> 02:31:01,578 AND ALSO I WORK WITH IN 3977 02:31:01,578 --> 02:31:03,279 COMMUNITIES. I WORK WITH 3978 02:31:03,279 --> 02:31:05,281 COMMUNITIES IN BRITISH COLUMBIA, 3979 02:31:05,281 --> 02:31:08,918 IN ARIZONA, ACROSS THE UNITED 3980 02:31:08,918 --> 02:31:15,759 STATES. SO I AM REALLY EXCITED 3981 02:31:15,759 --> 02:31:18,161 TO CONTINUE THIS WORK. I WANTED 3982 02:31:18,161 --> 02:31:23,033 TO END WITH THE NEXT STEPS IN 3983 02:31:23,033 --> 02:31:23,733 PRECISION PHARMACOGENETICS. SO 3984 02:31:23,733 --> 02:31:29,439 MY COLLEAGUES AND I WROTE THIS 3985 02:31:29,439 --> 02:31:31,574 ARTICLE IN HOW TO IMPLEMENT 3986 02:31:31,574 --> 02:31:35,211 PHARMCO YES THEMMICS IN THE 3987 02:31:35,211 --> 02:31:35,745 INDIGENOUS COMMUNITIES. 3988 02:31:35,745 --> 02:31:38,048 SO THIS IS ONE OF OUR FIGURES WE 3989 02:31:38,048 --> 02:31:39,749 THOUGHT THAT THIS WAS A GOOD WAY 3990 02:31:39,749 --> 02:31:43,053 OF THINKING ABOUT ALL OF THE 3991 02:31:43,053 --> 02:31:44,320 DIFFERENT COMPONENTS TO TAKING A 3992 02:31:44,320 --> 02:31:47,991 HOLISTIC HEALING APPROACH. SO 3993 02:31:47,991 --> 02:31:51,161 IN THE MIDDLE WE SHARE ALL OF 3994 02:31:51,161 --> 02:31:53,797 THE KEY PEOPLE AND STAKEHOLDERS 3995 02:31:53,797 --> 02:31:57,734 WHO ARE INVOLVED. NOT ONLY IN 3996 02:31:57,734 --> 02:32:00,103 COMMUNITIES BUT RESEARCHERS, 3997 02:32:00,103 --> 02:32:01,638 FUNDERS, TRIBAL HEALTH, 3998 02:32:01,638 --> 02:32:05,075 TRADITIONAL HEALERS AND RESEARCH 3999 02:32:05,075 --> 02:32:05,942 PARTICIPANTS. AND THEN WE 4000 02:32:05,942 --> 02:32:11,481 THOUGHT THAT INCREASING 4001 02:32:11,481 --> 02:32:13,383 KNOWLEDGE, PHARMACOGENETIC 4002 02:32:13,383 --> 02:32:15,752 KNOWLEDGE OF USING AMERICAN 4003 02:32:15,752 --> 02:32:17,554 INDIAN ALASKAN NATIVE VARIATION 4004 02:32:17,554 --> 02:32:19,022 WAS SUPER IMPORTANT BECAUSE 4005 02:32:19,022 --> 02:32:20,390 UNTIL WE KNOW THIS VARIATION, 4006 02:32:20,390 --> 02:32:23,126 WE'RE NOT ABLE TO IMPLEMENT IT 4007 02:32:23,126 --> 02:32:24,761 CLINICALLY AND THAT WAS THE 4008 02:32:24,761 --> 02:32:26,429 OTHER AREA THAT WE THOUGHT WAS 4009 02:32:26,429 --> 02:32:28,064 REALLY IMPORTANT IN THINKING 4010 02:32:28,064 --> 02:32:30,066 ABOUT CLINICAL IMPLEMENTATION 4011 02:32:30,066 --> 02:32:32,435 WHICH IS RELATED TO CLINICAL 4012 02:32:32,435 --> 02:32:35,138 DECISION SUPPORT SYSTEMS. 4013 02:32:35,138 --> 02:32:36,406 PHARMACOGENETIC TESTING AND ALSO 4014 02:32:36,406 --> 02:32:38,875 EDUCATION AND RESOURCES FOR 4015 02:32:38,875 --> 02:32:40,777 PHYSICIANS WHO ARE WORKING WITH 4016 02:32:40,777 --> 02:32:44,881 NATIVE PARTICIPANTS OR NATIVE 4017 02:32:44,881 --> 02:32:46,683 PATIENTS. AND THEN LASTLY 4018 02:32:46,683 --> 02:32:49,052 TRADITIONAL KNOWLEDGE AND 4019 02:32:49,052 --> 02:32:51,621 PRACTICES. SO THIS WAS BACK A 4020 02:32:51,621 --> 02:32:55,758 COUPLE YEARS AGO THE TRIBAL 4021 02:32:55,758 --> 02:32:57,227 HEALTH RESEARCH OFFICE PUT 4022 02:32:57,227 --> 02:32:59,963 TOGETHER A SUMMIT. AND IT WAS 4023 02:32:59,963 --> 02:33:02,866 HELD AT UNIVERSITY OF COLORADO 4024 02:33:02,866 --> 02:33:04,067 BUT THIS REPORT IS AVAILABLE 4025 02:33:04,067 --> 02:33:05,735 ONLINE BUT ONE OF THE QUOTES 4026 02:33:05,735 --> 02:33:07,537 THAT I LIKED IS THAT IT IS 4027 02:33:07,537 --> 02:33:10,273 IMPORTANT FOR RESEARCHERS TO 4028 02:33:10,273 --> 02:33:11,374 UNDERSTAND THAT THERE IS AN 4029 02:33:11,374 --> 02:33:13,343 INTERSECTION BETWEEN HEALTH, 4030 02:33:13,343 --> 02:33:14,677 RESEARCH AND SPIRITUALITY IN 4031 02:33:14,677 --> 02:33:19,048 AMERICAN INDIAN ALASKAN NATIVE 4032 02:33:19,048 --> 02:33:20,350 HEALTH AND SO THIS GOES BACK TO 4033 02:33:20,350 --> 02:33:21,885 WHAT I SAID INITIALLY THAT A LOT 4034 02:33:21,885 --> 02:33:23,586 OF OUR COMMUNITY MEMBERS ARE 4035 02:33:23,586 --> 02:33:25,788 STILL USING TRADITIONAL HERBS 4036 02:33:25,788 --> 02:33:28,992 AND TRADITIONAL CEREMONIES 4037 02:33:28,992 --> 02:33:30,560 WHENEVER SOMETHING BAD HAPPENS 4038 02:33:30,560 --> 02:33:32,829 SO IF THERE'S A DIAGNOSIS FOR A 4039 02:33:32,829 --> 02:33:34,764 DISEASE, THEY OFTEN GO TO THE 4040 02:33:34,764 --> 02:33:37,800 TRADITIONAL PEOPLE FIRST. AND 4041 02:33:37,800 --> 02:33:40,803 THEN THEY GO TO THE WESTERN 4042 02:33:40,803 --> 02:33:41,971 TREATMENT OPTION. SO, AND 4043 02:33:41,971 --> 02:33:44,007 IT'S -- THERE'S A SEPARATION 4044 02:33:44,007 --> 02:33:46,709 THAT DOESN'T NEED TO BE A 4045 02:33:46,709 --> 02:33:49,712 SEPARATION BUT WE CAN DO IT 4046 02:33:49,712 --> 02:33:50,580 TOGETHER AND ONE OF THE THINGS 4047 02:33:50,580 --> 02:33:54,551 IN PHARMACOGENETICS WE HAVE ALL 4048 02:33:54,551 --> 02:34:02,325 OF THESE GUIDELINES THAT WE HAVE 4049 02:34:02,325 --> 02:34:04,194 TO ESTABLISH A PERSON'S DOSE TO 4050 02:34:04,194 --> 02:34:06,529 TREATMENT A PERSON'S DEPRESSION. 4051 02:34:06,529 --> 02:34:09,165 THAT'S JUST TREATING ONE SYMPTOM 4052 02:34:09,165 --> 02:34:10,066 WHEREAS IN ORDER TO TREAT THE 4053 02:34:10,066 --> 02:34:13,703 WHOLE PERSON WE NEED TO TAKE IN 4054 02:34:13,703 --> 02:34:14,537 THE WHOLE COMMUNITY ENVIRONMENT 4055 02:34:14,537 --> 02:34:19,642 THAT THE PERSON LIVES IN. SO, 4056 02:34:19,642 --> 02:34:30,186 WITH THAT, I WILL LEAVE YOU WITH 4057 02:34:35,491 --> 02:34:38,228 A COUPLE THOUGHTS. WE NEED TO 4058 02:34:38,228 --> 02:34:42,632 SHIFT TO COMMUNITY BASED 4059 02:34:42,632 --> 02:34:44,000 RESEARCH AND HOLISTIC HEALING TO 4060 02:34:44,000 --> 02:34:46,402 ENSURE THAT PEOPLE ARE HEALTHY 4061 02:34:46,402 --> 02:34:47,770 TO THE BEST THAT THEY CAN BE. 4062 02:34:47,770 --> 02:34:50,440 AND THEN WE HAVE TO ENSURE THAT 4063 02:34:50,440 --> 02:34:53,910 INDIGENOUS COMMUNITIES GOVERN 4064 02:34:53,910 --> 02:34:55,378 AND BENEFIT FROM RESEARCH AND 4065 02:34:55,378 --> 02:34:58,314 WITH THAT, I WILL THANK YOU. I 4066 02:34:58,314 --> 02:35:00,516 WANT TO THANK MY LAB MEMBERS, 4067 02:35:00,516 --> 02:35:02,585 CURRENT AND PAST. AND ALSO I 4068 02:35:02,585 --> 02:35:05,355 WANT TO THANK MY TRIBAL PARTNERS 4069 02:35:05,355 --> 02:35:07,223 WHO HAVE BEEN AMAZING AND 4070 02:35:07,223 --> 02:35:11,294 SUPPORTIVE ALL OF THIS WOULD NOT 4071 02:35:11,294 --> 02:35:12,996 BE DONE WITHOUT THEIR INPUT AND 4072 02:35:12,996 --> 02:35:18,301 THEN ALSO MY MANY COLLABORATORS 4073 02:35:18,301 --> 02:35:19,736 ACROSS THE WORLD AND THE U.S. 4074 02:35:19,736 --> 02:35:23,072 BUT THANK YOU, EVERYONE AND I'M 4075 02:35:23,072 --> 02:35:24,707 HAPPY TO TAKE QUESTIONS. 4076 02:35:24,707 --> 02:35:29,245 >> THANK YOU SO MUCH, KATRINA. 4077 02:35:29,245 --> 02:35:30,813 ALWAYS GREAT TO HAVE YOU AND 4078 02:35:30,813 --> 02:35:32,382 YOUR PERSPECTIVE AND HAVE YOU 4079 02:35:32,382 --> 02:35:33,549 SHARE YOUR DEPTH OF KNOWLEDGE 4080 02:35:33,549 --> 02:35:35,585 WITH US. LET ME SEE, SO WE HAVE 4081 02:35:35,585 --> 02:35:38,621 BOTH A COUPLE OF PEOPLE, WELL, 4082 02:35:38,621 --> 02:35:39,722 MORE THAN A COUPLE BUT SOME 4083 02:35:39,722 --> 02:35:41,858 PEOPLE HERE IN THE AUDIENCE THAT 4084 02:35:41,858 --> 02:35:43,760 ARE GOING TO GO TO THE MICS IF 4085 02:35:43,760 --> 02:35:47,297 THEY HAVE ANY QUESTIONS. AND 4086 02:35:47,297 --> 02:35:53,002 THEN I HAVE FOLKS WHO ARE COMING 4087 02:35:53,002 --> 02:35:55,738 IN FROM VIDEO AND I'M CHECKING 4088 02:35:55,738 --> 02:35:57,106 TO SEE IF THEY HAVE ANY 4089 02:35:57,106 --> 02:35:58,174 QUESTIONS FOR YOU. 4090 02:35:58,174 --> 02:35:59,842 >> SORRY, I'M NOT ABLE TO HEAR 4091 02:35:59,842 --> 02:36:00,176 ANYTHING. 4092 02:36:00,176 --> 02:36:02,278 >> OH, YOU CAN'T HEAR ANYTHING, 4093 02:36:02,278 --> 02:36:05,715 IS THAT SOMETHING ON YOUR END UP 4094 02:36:05,715 --> 02:36:10,787 THERE? CAN YOU NOT HERE US AT 4095 02:36:10,787 --> 02:36:14,991 ALL, KATRINA? HM, THAT'S -- 4096 02:36:14,991 --> 02:36:20,830 WEIRD BECAUSE WE DIDN'T DO 4097 02:36:20,830 --> 02:36:22,699 ANYTHING OTHER THAN TURN THE 4098 02:36:22,699 --> 02:36:33,242 SLIDES OFF. MAYBE ONCE ALEX IS 4099 02:37:12,448 --> 02:37:14,050 IN I CAN TRANSLATE TO YOU TO ASK 4100 02:37:14,050 --> 02:37:18,454 THE QUESTION? SO IF YOU COULD 4101 02:37:18,454 --> 02:37:21,524 ASK KATRINA ABOUT, SO, WE'VE 4102 02:37:21,524 --> 02:37:28,398 BEEN TALKING TODAY -- WE'VE BEEN 4103 02:37:28,398 --> 02:37:30,333 TALKING TODAY ABOUT GENOMICS AND 4104 02:37:30,333 --> 02:37:33,669 I'M WONDERING IF IN HER WORK SHE 4105 02:37:33,669 --> 02:37:36,839 HAS FOUND WHETHER, I'M ASSUMING 4106 02:37:36,839 --> 02:37:39,742 THESE PRINCIPLES WOULD APPLY TO 4107 02:37:39,742 --> 02:37:41,144 ANY RESEARCH THAT'S BEING 4108 02:37:41,144 --> 02:37:43,746 CONDUCTED IN INDIGENOUS 4109 02:37:43,746 --> 02:37:44,947 COMMUNITIES OR WHETHER THERE'S 4110 02:37:44,947 --> 02:37:46,516 ANY ADDITIONAL FEEDBACK SHE 4111 02:37:46,516 --> 02:37:57,059 WOULD HAVE ON THAT. HERE IS MY 4112 02:38:02,265 --> 02:38:04,100 QUESTION. WE'VE BEEN TALKING 4113 02:38:04,100 --> 02:38:06,569 CERTAINLY FROM YOUR PERSPECTIVE 4114 02:38:06,569 --> 02:38:07,170 FROM PHARMACOGENOMICS MORE 4115 02:38:07,170 --> 02:38:08,538 GENERALLY AND WE'VE BEEN TALKING 4116 02:38:08,538 --> 02:38:10,339 ABOUT THAT ALL DAY. BUT I'M 4117 02:38:10,339 --> 02:38:12,308 WONDERING IF, I MEAN, IT SEEMS 4118 02:38:12,308 --> 02:38:15,978 TO ME THAT ALL OF THE PRINCIPLES 4119 02:38:15,978 --> 02:38:18,614 AND APPROACHES AND THE -- WOULD 4120 02:38:18,614 --> 02:38:25,388 APPLY TO ANY RESEARCHER WHO THE 4121 02:38:25,388 --> 02:38:26,189 IS PLANNING TO ENGAGE IN A 4122 02:38:26,189 --> 02:38:32,261 RESEARCH EFFORT. 4123 02:38:32,261 --> 02:38:33,696 >> THAT'S RIGHT THINK IT IS NOT 4124 02:38:33,696 --> 02:38:37,467 ONLY INDIGENOUS COMMUNITIES I 4125 02:38:37,467 --> 02:38:40,269 THINK OTHER COMMUNITIES, WE CAN 4126 02:38:40,269 --> 02:38:42,371 USE THESE SAME PRINCIPLES. 4127 02:38:42,371 --> 02:38:43,806 >> SO OTHER COMMUNITIES THAT 4128 02:38:43,806 --> 02:38:47,477 MIGHT BE UNDERSERVED OR, I 4129 02:38:47,477 --> 02:38:55,585 THINK, I REALLY LIKE THE OF NOT 4130 02:38:55,585 --> 02:39:00,056 THINKING OF THESE AS SEPARATE 4131 02:39:00,056 --> 02:39:01,624 REALMS. 4132 02:39:01,624 --> 02:39:02,391 THERE IS SCIENCE AND CULTURAL 4133 02:39:02,391 --> 02:39:03,826 CONDITIONS ON THE OTHER AND THAT 4134 02:39:03,826 --> 02:39:06,295 SEEMS LIKE A UNIVERSAL LESSON 4135 02:39:06,295 --> 02:39:08,965 THAT THERE ARE ALL SORTS OF WAYS 4136 02:39:08,965 --> 02:39:13,269 THAT IF YOU GO IN WITH ONE 4137 02:39:13,269 --> 02:39:15,404 PERSPECTIVE AND SORT OF DISMISS 4138 02:39:15,404 --> 02:39:17,807 THE OTHER, IT WOULDN'T BE 4139 02:39:17,807 --> 02:39:18,808 SURPRISING IF YOU WOULDN'T BE 4140 02:39:18,808 --> 02:39:21,177 WELCOME INTO THAT COMMUNITY. 4141 02:39:21,177 --> 02:39:27,617 >> M-HM. 4142 02:39:27,617 --> 02:39:29,652 >> IN THINKING MORE ABOUT THE 4143 02:39:29,652 --> 02:39:33,689 WORK THAT YOU'RE DOING, ARE 4144 02:39:33,689 --> 02:39:37,827 THERE PARTICULAR TOPICS THAT YOU 4145 02:39:37,827 --> 02:39:41,531 FIND ARE, YOU KNOW, MORE 4146 02:39:41,531 --> 02:39:44,867 CONTROVERSIAL THAN OTHERS WHEN 4147 02:39:44,867 --> 02:39:45,368 ENGAGING IN INDIGENOUS 4148 02:39:45,368 --> 02:39:46,903 COMMUNITIES OR IS IT A MATTER OF 4149 02:39:46,903 --> 02:39:50,072 SORT OF MEETING THEM WHERE THEY 4150 02:39:50,072 --> 02:39:54,644 ARE AND ENGAGING THEM FROM THAT 4151 02:39:54,644 --> 02:39:56,812 POIN 4152 02:39:56,812 --> 02:39:57,013 POINT? 4153 02:39:57,013 --> 02:39:58,180 >> YEAH, I THINK THAT'S 4154 02:39:58,180 --> 02:40:01,851 INITIALLY ONE OF THE QUESTIONS 4155 02:40:01,851 --> 02:40:06,522 THAT I ALWAYS GET. AND FROM 4156 02:40:06,522 --> 02:40:09,425 FOLKS IS ABOUT TRIBAL MEMBERSHIP 4157 02:40:09,425 --> 02:40:15,064 AND TRIBAL ENROLLMENT IN HOW 4158 02:40:15,064 --> 02:40:18,968 GENETICS COULD PLAY A ROLE BUT I 4159 02:40:18,968 --> 02:40:21,370 THINK IT'S -- I DON'T THINK THAT 4160 02:40:21,370 --> 02:40:24,507 GENETICS CAN HELP WITH THAT 4161 02:40:24,507 --> 02:40:27,510 BECAUSE A LOT OF TRIBAL 4162 02:40:27,510 --> 02:40:29,912 ENROLLMENT RULES ARE 4163 02:40:29,912 --> 02:40:32,014 TRIBE-SPECIFIC TOO. SO IT 4164 02:40:32,014 --> 02:40:34,984 ALWAYS INVOLVES A CONVERSATION 4165 02:40:34,984 --> 02:40:38,688 OF WHAT CAN GENETICS ACTUALLY 4166 02:40:38,688 --> 02:40:40,222 DO. WE CAN'T DISTINGUISH 4167 02:40:40,222 --> 02:40:44,327 BETWEEN PEOPLE AT A TRIBAL LEVEL 4168 02:40:44,327 --> 02:40:48,297 AND WOULD WE EVEN WANT TO ALSO. 4169 02:40:48,297 --> 02:40:50,933 I THINK THE OTHER, ONE OF THE 4170 02:40:50,933 --> 02:40:52,768 WAYS IT'S -- GENETICS CAN BE 4171 02:40:52,768 --> 02:40:55,338 USED IN TRIBAL ENROLLMENT IS 4172 02:40:55,338 --> 02:40:58,407 LIKE A PATERNITY TEST THAT IS 4173 02:40:58,407 --> 02:41:01,744 THE ONLY -- GENETIC TEST I'VE 4174 02:41:01,744 --> 02:41:03,579 USE SEEN BEING USED BUT THAT'S A 4175 02:41:03,579 --> 02:41:08,184 SORT OF CONTROVERSIAL -- BE A 4176 02:41:08,184 --> 02:41:09,185 CONTENTIOUS TOPIC THAT I DON'T 4177 02:41:09,185 --> 02:41:10,219 DO ANY RESEARCH IN THAT AREA. 4178 02:41:10,219 --> 02:41:14,523 SO I TRY TO AVOID THAT IF 4179 02:41:14,523 --> 02:41:20,529 POSSIBLE. THE OTHER THING, I 4180 02:41:20,529 --> 02:41:24,400 THINK THE OTHER TOPICS ARE 4181 02:41:24,400 --> 02:41:26,068 REALLY DRIVEN BY THE TRIBAL 4182 02:41:26,068 --> 02:41:27,169 COMMUNITIES INVOLVED. SOMETIMES 4183 02:41:27,169 --> 02:41:30,640 IT'S ALSO THAT I HAVE TO TAKE A 4184 02:41:30,640 --> 02:41:34,176 STEP BACK AND SAY THAT, WELL, 4185 02:41:34,176 --> 02:41:36,379 THIS TECHNICALLY ISN'T A 4186 02:41:36,379 --> 02:41:39,749 GENETICS -- GENETICS RESEARCH 4187 02:41:39,749 --> 02:41:40,383 PROBABLY WON'T HELP THIS AS MUCH 4188 02:41:40,383 --> 02:41:47,690 AS PREVENTION RESEARCH OR HAVE 4189 02:41:47,690 --> 02:41:48,290 ADEQUATE HEALTH CARE. THAT'S 4190 02:41:48,290 --> 02:41:49,892 ONE OF THE THINGS I THINK OF 4191 02:41:49,892 --> 02:41:54,397 WHEN LIKE A LOT OF PEOPLE, ARE 4192 02:41:54,397 --> 02:41:55,731 INTERESTED IN TYPE TWO DIABETES 4193 02:41:55,731 --> 02:41:56,966 BECAUSE IT AFFECTS SO MANY OF 4194 02:41:56,966 --> 02:41:58,701 THEIR COMMUNITY MEMBERS BUT I 4195 02:41:58,701 --> 02:42:00,569 DON'T KNOW IF A GENETIC APPROACH 4196 02:42:00,569 --> 02:42:02,405 WOULD BE APPROPRIATE, LIKE, 4197 02:42:02,405 --> 02:42:04,473 USING A LOT OF FUNDS TO STUDY 4198 02:42:04,473 --> 02:42:06,842 TYPE TWO DIABETES IN GENETIC -- 4199 02:42:06,842 --> 02:42:10,846 IN THE GENETICS ASPECT WHEN I 4200 02:42:10,846 --> 02:42:12,882 CAN SEE THAT THERE ARE -- PEOPLE 4201 02:42:12,882 --> 02:42:16,285 ARE LIVING IN FOOD DESERTS, THEY 4202 02:42:16,285 --> 02:42:20,723 DON'T HAVE ADEQUATE ACCESS TO 4203 02:42:20,723 --> 02:42:21,991 HEALTHY FOODS, THEY DON'T HAVE A 4204 02:42:21,991 --> 02:42:23,659 LOT OF OTHER RESOURCES THAT ARE 4205 02:42:23,659 --> 02:42:25,628 NOT GENETICS BUT OTHER 4206 02:42:25,628 --> 02:42:28,531 PREVENTION MECHANISMS. THAT ARE 4207 02:42:28,531 --> 02:42:29,398 MORE APPROPRIATE FOR WHEN YOU'RE 4208 02:42:29,398 --> 02:42:31,167 THINKING ABOUT THOSE TOPICS SO I 4209 02:42:31,167 --> 02:42:34,937 THINK I'M ALWAYS TRYING TO SEE 4210 02:42:34,937 --> 02:42:38,841 HOW, WOULD GENETICS REALLY PLAY 4211 02:42:38,841 --> 02:42:41,911 A ROLE? AND JUST THINKING ABOUT 4212 02:42:41,911 --> 02:42:44,080 WHAT WOULD BE BEST FROM MY 4213 02:42:44,080 --> 02:42:45,981 PERSPECTIVE, THAT'S ALWAYS WHY 4214 02:42:45,981 --> 02:42:49,285 AND WHEN I DO THESE STUDIES TRY 4215 02:42:49,285 --> 02:42:51,220 TO AT LEAST HAVE OTHER TYPES OF 4216 02:42:51,220 --> 02:42:53,055 MEASUREMENTS THAT CAN BE USEFUL 4217 02:42:53,055 --> 02:42:55,291 IN THE FUTURE TOO IF WE DO DO 4218 02:42:55,291 --> 02:42:57,126 SOME TYPE OF GENETICS. 4219 02:42:57,126 --> 02:42:59,328 >> YEAH, JUST ANOTHER REMINDER 4220 02:42:59,328 --> 02:43:03,599 ABOUT CONTEXT. RIGHT? IN TERMS 4221 02:43:03,599 --> 02:43:07,069 OF, YOU KNOW, THE -- THE 4222 02:43:07,069 --> 02:43:09,772 LIMITATIONS OF THE GENETIC 4223 02:43:09,772 --> 02:43:10,773 INFORMATION. WE HAVE A QUESTION 4224 02:43:10,773 --> 02:43:10,973 HERE. 4225 02:43:10,973 --> 02:43:12,441 >> I WAS WONDERING IF YOU CAN 4226 02:43:12,441 --> 02:43:13,642 SAY MORE ABOUT THE DISCUSSIONS 4227 02:43:13,642 --> 02:43:14,777 WITHIN THE NAVAJO NATION ABOUT 4228 02:43:14,777 --> 02:43:16,679 THE BAN ON GENETICS RESEARCH AND 4229 02:43:16,679 --> 02:43:19,482 IF IT'S JUST KIND OF THE RISKS 4230 02:43:19,482 --> 02:43:20,116 SEEM TO BE MORE THAN THE 4231 02:43:20,116 --> 02:43:21,617 BENEFITS FOR PEOPLE WITHIN THE 4232 02:43:21,617 --> 02:43:23,285 NATION. AND ALSO IF THAT 4233 02:43:23,285 --> 02:43:26,088 EXTENDS TO CLINICAL GENETICS OR 4234 02:43:26,088 --> 02:43:27,156 JUST RESEARCH. 4235 02:43:27,156 --> 02:43:31,761 >> YEAH. THAT'S A GREAT 4236 02:43:31,761 --> 02:43:33,929 QUESTION. SO THE MORATORIUM 4237 02:43:33,929 --> 02:43:37,032 ONLY EXTENDS TO INDIVIDUALS ON 4238 02:43:37,032 --> 02:43:39,335 THE JURISDICTION OF THE NAVAJO 4239 02:43:39,335 --> 02:43:40,736 NATION SO TECHNICALLY IF YOU 4240 02:43:40,736 --> 02:43:43,205 WERE OFF THE NAVAJO NATION YOU 4241 02:43:43,205 --> 02:43:45,074 COULD PARTICIPATE IN A STUDY. 4242 02:43:45,074 --> 02:43:48,677 AND IT'S ONLY ON RESEARCH. 4243 02:43:48,677 --> 02:43:51,747 CLINICAL USE OF GENETICS FOR 4244 02:43:51,747 --> 02:43:52,748 CLINICAL TESTING CAN BE DONE. 4245 02:43:52,748 --> 02:43:55,751 IT'S OFTEN NOT DONE ON THE 4246 02:43:55,751 --> 02:43:58,821 NAVAJO NATION ANYWAYS BUT THEY 4247 02:43:58,821 --> 02:44:01,357 USUALLY HAVE TO REFER PEOPLE 4248 02:44:01,357 --> 02:44:03,392 OUTSIDE THE RESERVATION FOR 4249 02:44:03,392 --> 02:44:04,293 CLINICAL TESTING IF IT'S BEING 4250 02:44:04,293 --> 02:44:05,861 USED FOR CLINICAL CARE I THINK 4251 02:44:05,861 --> 02:44:08,531 THAT'S COMPLETELY ALLOWABLE. 4252 02:44:08,531 --> 02:44:09,899 AND SO BACK WHEN THE MORATORIUM 4253 02:44:09,899 --> 02:44:12,401 WAS PUT IN PLACE, THERE'S A 4254 02:44:12,401 --> 02:44:13,669 REALLY GREAT VIDEO THAT CAME OUT 4255 02:44:13,669 --> 02:44:15,638 AROUND THE TIME CALLED THE GIFT 4256 02:44:15,638 --> 02:44:18,307 OF LIFE. IT'S, I DON'T KNOW IF 4257 02:44:18,307 --> 02:44:19,375 IT'S AVAILABLE ONLINE BUT -- 4258 02:44:19,375 --> 02:44:20,442 >> WE'LL LOOK FOR IT. 4259 02:44:20,442 --> 02:44:21,944 >> IT'S A REALLY GREAT VIDEO 4260 02:44:21,944 --> 02:44:25,147 THAT CONTEXTUALIZES ALL OF THE 4261 02:44:25,147 --> 02:44:28,050 CONCERNS AT THE TIME. I THINK 4262 02:44:28,050 --> 02:44:30,152 ALSO THESE PERCEPTIONS HAVE 4263 02:44:30,152 --> 02:44:33,856 CHANGED SO WE PUBLISHED A PAPER 4264 02:44:33,856 --> 02:44:36,859 IN 2019 WHERE WE DID A SURVEY IN 4265 02:44:36,859 --> 02:44:39,461 THE NAVAJO COMMUNITY. WE 4266 02:44:39,461 --> 02:44:41,697 SURVEYED OVER 700 NAVAJO PEOPLE 4267 02:44:41,697 --> 02:44:44,166 AND WE ASKED THEM QUESTIONS LIKE 4268 02:44:44,166 --> 02:44:47,736 WHAT -- DID YOU KNOW MORATORIUM 4269 02:44:47,736 --> 02:44:50,940 WAS -- EXISTED? AND THEN ONE OF 4270 02:44:50,940 --> 02:44:52,241 THE LAST QUESTIONS WAS DO YOU 4271 02:44:52,241 --> 02:44:54,610 THINK THAT WE SHOULD LIFT OR 4272 02:44:54,610 --> 02:44:56,545 REMOVE THE MORATORIUM AND ALSO 4273 02:44:56,545 --> 02:44:57,713 WE ASKED THEM ABOUT DIFFERENT 4274 02:44:57,713 --> 02:45:01,183 CONCERNS THAT THEY HAD IN THE 4275 02:45:01,183 --> 02:45:07,523 COMMUNITY. SO, ONE OF THEM , 4276 02:45:07,523 --> 02:45:10,793 THE RESOUNDING RESULTS WAS OVER 4277 02:45:10,793 --> 02:45:14,763 75% OF PEOPLE DID NOT KNOW THE 4278 02:45:14,763 --> 02:45:18,167 MORATORIUM WAS IN PLACE BACK IN 4279 02:45:18,167 --> 02:45:19,435 2019 WHEN WE CONDUCTED THE 4280 02:45:19,435 --> 02:45:22,938 SURVEY. AND ABOUT 50-60% WERE 4281 02:45:22,938 --> 02:45:25,007 NOT SURE WHAT TO DO. THEY FELT 4282 02:45:25,007 --> 02:45:27,710 LIKE THEY WEREN'T INFORMED 4283 02:45:27,710 --> 02:45:29,178 ENOUGH TO KNOW WHETHER THEY 4284 02:45:29,178 --> 02:45:31,714 SHOULD SUPPORT LIFTING THE 4285 02:45:31,714 --> 02:45:32,982 MORATORIUM OR NOT. AND ONE OF 4286 02:45:32,982 --> 02:45:34,283 THE BIG THINGS THAT CAME OUT OF 4287 02:45:34,283 --> 02:45:36,318 THAT WAS THAT PEOPLE SAID WE 4288 02:45:36,318 --> 02:45:37,853 WANT MORE INFORMATION ON 4289 02:45:37,853 --> 02:45:39,755 GENETICS AND HOW IT COULD AFFECT 4290 02:45:39,755 --> 02:45:43,926 THE NAVAJO COMMUNITY. WE WANT, 4291 02:45:43,926 --> 02:45:46,128 IF THIS WAS -- GENETIC RESEARCH 4292 02:45:46,128 --> 02:45:48,197 WAS TO GO FORWARD WE WANT IT TO 4293 02:45:48,197 --> 02:45:49,431 PRIORITIZE SOME OF THE HEALTH 4294 02:45:49,431 --> 02:45:53,702 ISSUES IN OUR COMMUNITY. AND 4295 02:45:53,702 --> 02:45:56,572 THEN WE WANT TO BE INVOLVED AND 4296 02:45:56,572 --> 02:45:58,674 SO THAT SURVEY LED TO MY 4297 02:45:58,674 --> 02:45:59,875 COLLEAGUES AND I CREATING 4298 02:45:59,875 --> 02:46:02,411 ANOTHER, OR SUBMITTING ANOTHER 4299 02:46:02,411 --> 02:46:04,480 GRANT. IT'S A PILOT GRANT AND 4300 02:46:04,480 --> 02:46:06,215 AS A PART OF THAT GRANT WE 4301 02:46:06,215 --> 02:46:08,684 PROPOSE TO DEVELOP ALL OF THESE 4302 02:46:08,684 --> 02:46:11,053 GENETIC LITERACY PROJECTS FOR 4303 02:46:11,053 --> 02:46:12,488 THE NAVAJO NATION SO WE'RE 4304 02:46:12,488 --> 02:46:14,189 EXCITED THAT NEXT YEAR WE, AS A 4305 02:46:14,189 --> 02:46:16,358 PART OF THAT WE'RE ALSO -- 4306 02:46:16,358 --> 02:46:18,761 PROPOSED A -- TO HOST A BIG 4307 02:46:18,761 --> 02:46:20,729 CONFERENCE SO NEXT YEAR WE WILL 4308 02:46:20,729 --> 02:46:23,332 BE HOSTING THE NAVAJO GENETICS 4309 02:46:23,332 --> 02:46:27,636 CONFERENCE IN MAY OF 2025. 4310 02:46:27,636 --> 02:46:29,805 WHERE WE WILL SHARE ALL OF THE 4311 02:46:29,805 --> 02:46:31,040 EDUCATIONAL PRODUCTS THAT WE 4312 02:46:31,040 --> 02:46:34,109 HAVE CREATED. ONE IS A NAVAJO 4313 02:46:34,109 --> 02:46:36,845 GENETICS GLOSSARY OF OVER 250 4314 02:46:36,845 --> 02:46:38,714 GENETICS TERMS, TRANSLATED INTO 4315 02:46:38,714 --> 02:46:41,083 THE NAVAJO LANGUAGE. THAT WILL 4316 02:46:41,083 --> 02:46:43,686 BE A BOOK THAT WE PUBLISH. 4317 02:46:43,686 --> 02:46:46,889 ANOTHER IS FIVE DIGITAL STORIES 4318 02:46:46,889 --> 02:46:49,525 THAT WE WILL SHARE HOPEFULLY 4319 02:46:49,525 --> 02:46:50,893 BEFORE THEN. AND THEN WE'RE 4320 02:46:50,893 --> 02:46:53,362 ALSO CREATING A CULTURAL 4321 02:46:53,362 --> 02:46:55,531 FRAMEWORK FOR THINKING ABOUT 4322 02:46:55,531 --> 02:46:56,532 GENETIC RESEARCH WITHIN THE 4323 02:46:56,532 --> 02:46:58,467 NAVAJO COMMUNITY. WE'RE REALLY 4324 02:46:58,467 --> 02:46:59,535 EXCITED ABOUT THIS CONFERENCE 4325 02:46:59,535 --> 02:47:01,003 NEXT YEAR IF ANYONE'S INTERESTED 4326 02:47:01,003 --> 02:47:03,405 PLEASE LET ME KNOW WE SHOULD 4327 02:47:03,405 --> 02:47:06,308 HAVE A WEBSITE UP IN A COUPLE 4328 02:47:06,308 --> 02:47:08,344 MONTHS. OR THIS YEAR. BUT -- 4329 02:47:08,344 --> 02:47:09,812 THANK YOU FOR THAT QUESTION. 4330 02:47:09,812 --> 02:47:11,080 >> WELL, YEAH, AND THANK YOU, 4331 02:47:11,080 --> 02:47:13,515 AGAIN, KATRINA, IT'S ALWAYS A 4332 02:47:13,515 --> 02:47:14,383 PLEASURE TO HAVE YOU AND ENJOY 4333 02:47:14,383 --> 02:47:17,019 THE REST OF YOUR DAY. 4334 02:47:17,019 --> 02:47:19,355 >> THANK YOU. BYE, EVERYONE. 4335 02:47:19,355 --> 02:47:21,423 >> THANK YOU. AND WE WILL 4336 02:47:21,423 --> 02:47:24,059 RECONVENE NEXT WEEK WHERE WE 4337 02:47:24,059 --> 02:47:25,828 WILL HAVE JILL FISHER WHO WILL 4338 02:47:25,828 --> 02:47:27,730 BE JOINING US FROM THE 4339 02:47:27,730 --> 02:47:28,897 UNIVERSITY OF NORTH CAROLINA AND 4340 02:47:28,897 --> 02:47:30,733 I'M VERY EXCITED. WE'RE GOING 4341 02:47:30,733 --> 02:47:34,336 TO HAVE A PANEL OF PARTICIPANTS 4342 02:47:34,336 --> 02:47:35,738 WHO PREVIOUSLY ENROLLED IN 4343 02:47:35,738 --> 02:47:37,439 RESEARCH PROJECTS HERE AT THE 4344 02:47:37,439 --> 02:47:39,742 CLINICAL CENTER TO SHARE THEIR 4345 02:47:39,742 --> 02:47:49,742 STORIES.