1 00:00:05,760 --> 00:00:07,080 >> WELCOME 2 00:00:07,080 --> 00:00:10,240 TO THE 2022 NIH TRIBAL ADVISORY 3 00:00:10,240 --> 00:00:10,640 COMMITTEE MEETING. 4 00:00:10,640 --> 00:00:11,800 MY NAME IS DR. DAVID WILSON AND 5 00:00:11,800 --> 00:00:14,680 I AM THEY DIRECTOR THE NIH 6 00:00:14,680 --> 00:00:15,320 TRIBAL HEALTH RESEARCH OFFICE 7 00:00:15,320 --> 00:00:17,640 AND I WOULD LIKE TO CALL THIS 8 00:00:17,640 --> 00:00:18,480 MEETING TO ORDER. 9 00:00:18,480 --> 00:00:22,120 OUR FIRST ORDER OF BUSINESS WILL 10 00:00:22,120 --> 00:00:24,640 BE THE ROLL CALL. 11 00:00:24,640 --> 00:00:24,880 KENDRA? 12 00:00:24,880 --> 00:00:26,800 >>THANK YOU DR. WILSON WE WILL 13 00:00:26,800 --> 00:00:28,840 DO OUR ROLE CALL STARTING WITH 14 00:00:28,840 --> 00:00:31,400 THE IHS AREAS AND MOVING INTO 15 00:00:31,400 --> 00:00:32,640 NATIONAL AT-LARGE MEMBERS SO IF 16 00:00:32,640 --> 00:00:33,720 YOU WILL JUST ACKNOWLEDGE FOR 17 00:00:33,720 --> 00:00:35,040 THOSE WHO ARE PRESENT FOR THE 18 00:00:35,040 --> 00:00:38,320 MEETING WE WILL START OUT WITH 19 00:00:38,320 --> 00:00:38,560 ALASKA. 20 00:00:38,560 --> 00:00:41,880 >>WELL, IT'S GOOD MORNING HERE 21 00:00:41,880 --> 00:00:43,960 IN ALASKA. 22 00:00:43,960 --> 00:00:44,520 DENISE DILLARD. 23 00:00:44,520 --> 00:00:55,000 >>THANK YOU DR. DILLARD. 24 00:00:56,120 --> 00:00:57,000 >>ALBUQUERQUE AREA. 25 00:00:57,000 --> 00:00:58,160 >>[INDISCERNIBLE]. 26 00:00:58,160 --> 00:01:08,040 BILLINGS AREA? 27 00:01:08,040 --> 00:01:09,520 GREAT PLAINS? 28 00:01:09,520 --> 00:01:13,280 LOOKS LIKE WOO HAVE DR. MOUSSO 29 00:01:13,280 --> 00:01:15,040 ON THE LINE. 30 00:01:15,040 --> 00:01:23,320 AND HER TECHNICAL ADVISOR. 31 00:01:23,320 --> 00:01:26,360 NASHVILLE AREA? 32 00:01:26,360 --> 00:01:29,160 >>THIS IS DR. JOCK NASHVILLE 33 00:01:29,160 --> 00:01:29,360 AREA. 34 00:01:29,360 --> 00:01:31,240 >>THANK YOU DR. JOCK. 35 00:01:31,240 --> 00:01:34,760 WE HAVE CHRISTIE'S TECHNICAL 36 00:01:34,760 --> 00:01:35,760 ADVISOR, NAVAHO? 37 00:01:35,760 --> 00:01:38,520 >>GOOD MORNING THIS IS 38 00:01:38,520 --> 00:01:40,840 DR. [INDISCERNIBLE] WITH NAVAHO 39 00:01:40,840 --> 00:01:41,840 NATION. 40 00:01:41,840 --> 00:01:42,840 >>THANK YOU DOCTOR. 41 00:01:42,840 --> 00:01:45,120 >>OKLAHOMA AREA. 42 00:01:45,120 --> 00:01:49,600 >>GOOD AFTERNOON BOBBY 43 00:01:49,600 --> 00:01:51,080 SAUNKEAH, OKLAHOMA DELEGATE. 44 00:01:51,080 --> 00:01:57,960 >>THANK YOU BOBBY. 45 00:01:57,960 --> 00:01:59,000 COURT LAND AREA? 46 00:01:59,000 --> 00:02:04,640 LOOKS LIKE WE HAVE TECHNICAL 47 00:02:04,640 --> 00:02:08,600 ADVISOR REPRESENTATION FROM 48 00:02:08,600 --> 00:02:12,200 CANDAS HERMINEZ. 49 00:02:12,200 --> 00:02:13,240 >>TUCSON AREA? 50 00:02:13,240 --> 00:02:15,760 >>GOOD MORNING [INDISCERNIBLE] 51 00:02:15,760 --> 00:02:16,000 PRESENT. 52 00:02:16,000 --> 00:02:20,280 >>THANK YOU COUNCIL WOMAN. 53 00:02:20,280 --> 00:02:22,040 >>DR. SOLOMON PRESENT. 54 00:02:22,040 --> 00:02:24,080 >>THANK YOU DR. SOLMAN. 55 00:02:24,080 --> 00:02:25,520 NATIONAL AT-LARGE DEBBIE 56 00:02:25,520 --> 00:02:25,920 DANFORTH. 57 00:02:25,920 --> 00:02:27,720 I DON'T THINK SHE'S BEEN ABLE TO 58 00:02:27,720 --> 00:02:32,920 JOIN US YET BUT WE DO HAVE OUR 59 00:02:32,920 --> 00:02:34,360 TECHNICAL ADVISOR JESSICA DEAN 60 00:02:34,360 --> 00:02:38,400 ON THE LINE AND AT-LARGE MEMBER 61 00:02:38,400 --> 00:02:39,960 DR. DONNA GILBREATH. 62 00:02:39,960 --> 00:02:42,240 I BELIEVE SHE IS AVAILABLE. 63 00:02:42,240 --> 00:02:44,280 WE DO HAVE HER TECHNICAL ADVISOR 64 00:02:44,280 --> 00:02:48,880 TIM THOMAS ON THE LINE. 65 00:02:48,880 --> 00:02:52,160 SO WE'LL GO WITH NIH 66 00:02:52,160 --> 00:02:52,480 INTRODUCTIONS. 67 00:02:52,480 --> 00:02:57,760 WE WANT TO START WITH 68 00:02:57,760 --> 00:02:58,520 DR. EISINGER. 69 00:02:58,520 --> 00:03:02,720 >>HI, THIS IS DR. EI SINGER. 70 00:03:02,720 --> 00:03:04,320 >>THIS IS DR. DAVID WITH THE 71 00:03:04,320 --> 00:03:06,720 RESEARCH OFFICE. 72 00:03:06,720 --> 00:03:07,800 >>JULIA DEBLOOM DEPUTY DIRECTOR 73 00:03:07,800 --> 00:03:10,720 OF THE NIH TRIBAL HEALTH OFFICE. 74 00:03:10,720 --> 00:03:11,240 >>SURE. 75 00:03:11,240 --> 00:03:14,000 >>GOOD AFTERNOON, SARAH HULL, 76 00:03:14,000 --> 00:03:17,520 SENIOR ADVISOR AND BIOETHICS 77 00:03:17,520 --> 00:03:26,880 TRIBAL ETHICS OFFICE ON DETAIL. 78 00:03:26,880 --> 00:03:27,160 >>MOES? 79 00:03:27,160 --> 00:03:28,680 >>MIGHT HAVE HAD ISSUES, SO 80 00:03:28,680 --> 00:03:30,520 THAT'S OUR TEAM RIGHT THERE, 81 00:03:30,520 --> 00:03:30,880 KENDRA. 82 00:03:30,880 --> 00:03:31,880 GREAT, THANK YOU. 83 00:03:31,880 --> 00:03:33,960 IT DOESN'T LOOK LIKE WE'VE HAD 84 00:03:33,960 --> 00:03:35,400 ANY AKIGZAL TECH MEMBERS JOIN US 85 00:03:35,400 --> 00:03:37,880 YET SO THIS MEETING CURRENTLY IS 86 00:03:37,880 --> 00:03:38,920 FOR INFORMATIONAL PURPOSES, WE 87 00:03:38,920 --> 00:03:41,760 ARE SHORT 1 MEMBER FOR A QUORUM 88 00:03:41,760 --> 00:03:43,960 AT THIS TIME SO AS WE JOIN OTHER 89 00:03:43,960 --> 00:03:45,760 SAYS ON, WE CAN MAKE AN 90 00:03:45,760 --> 00:03:47,920 ANNOUNCEMENT IF WE MAKE A 91 00:03:47,920 --> 00:03:48,160 QUORUM. 92 00:03:48,160 --> 00:03:48,440 >>GREAT. 93 00:03:48,440 --> 00:03:49,520 THANK YOU KENDRA, AT THIS TIME, 94 00:03:49,520 --> 00:03:53,160 I WOULD LIKE TO ACKNOWLEDGE 95 00:03:53,160 --> 00:03:54,320 DR. BOB EISINGER WHO'S THE 96 00:03:54,320 --> 00:03:57,680 ACTING DIRECTOR FOR THE DIVISION 97 00:03:57,680 --> 00:03:59,840 OF ACCORD NATION AND PLATINUM 98 00:03:59,840 --> 00:04:00,520 STRATEGIC INITTIAIVE ITS TO 99 00:04:00,520 --> 00:04:04,280 SHARE A FEW WORDS SO 100 00:04:04,280 --> 00:04:04,640 DR. EISINGER. 101 00:04:04,640 --> 00:04:06,480 >>THANK YOU AND GOOD AFTERNOON 102 00:04:06,480 --> 00:04:07,200 AND GOOD EVENING EVERYONE AND 103 00:04:07,200 --> 00:04:09,640 WELCOME TO THE FALL MEETING OF 104 00:04:09,640 --> 00:04:10,720 THE NIH TRIBAL ADVISORY 105 00:04:10,720 --> 00:04:11,000 COMMITTEE. 106 00:04:11,000 --> 00:04:13,320 IT'S MY PLEASURE TO PARTICIPATE 107 00:04:13,320 --> 00:04:14,000 IN TODAY'S PROCEEDINGS. 108 00:04:14,000 --> 00:04:16,640 AS MOST OF YOU KNOW, THE NIH'S 109 00:04:16,640 --> 00:04:18,400 MISSION IS TO SEEK FUNDMENTAL 110 00:04:18,400 --> 00:04:20,800 KNOWLEDGE ABOUT THE NATURE, AND 111 00:04:20,800 --> 00:04:23,000 BEHAVIOR OF LIVING SYSTEMS AND 112 00:04:23,000 --> 00:04:25,840 THE APPLICATION OF THAT 113 00:04:25,840 --> 00:04:28,800 KNOWLEDGE TO ENHANCE HEALTH, 114 00:04:28,800 --> 00:04:31,480 LENGTHEN LIFE AND REDUCE ILLNESS 115 00:04:31,480 --> 00:04:33,200 AND DISABILITY. 116 00:04:33,200 --> 00:04:35,840 NIH SUPPORTS BASIC CLINICAL AND 117 00:04:35,840 --> 00:04:39,040 TRANSLATIONAL BIOMEDICAL AND 118 00:04:39,040 --> 00:04:40,400 BEHAVIORIAL AND SOCIAL SCIENCE 119 00:04:40,400 --> 00:04:42,120 RESEARCH INCLUDING RESEARCH ON 120 00:04:42,120 --> 00:04:43,000 TRIBAL HEALTH. 121 00:04:43,000 --> 00:04:49,120 IN THE DIVISION OF PROGRAM 122 00:04:49,120 --> 00:04:50,320 COORDINATION PLANNING AND 123 00:04:50,320 --> 00:04:51,480 STRATEGIC INITIATIVES WHICH 124 00:04:51,480 --> 00:04:53,440 INCLUDES THE TRIBAL RESEARCH 125 00:04:53,440 --> 00:04:56,160 OFFICE OR THRO, WE PLAN AND 126 00:04:56,160 --> 00:04:58,440 COORDINATE THE TRANSNIH 127 00:04:58,440 --> 00:04:59,760 INITIATIVES AND RESEARCH. 128 00:04:59,760 --> 00:05:03,360 WE SUPPORT AGENCY WIDE PORTFOLIO 129 00:05:03,360 --> 00:05:06,440 ANALYSIS AND IDENTIFY EMERGING 130 00:05:06,440 --> 00:05:08,920 SCIENTIFIC OPPORTUNITIES AND 131 00:05:08,920 --> 00:05:09,880 RESEARCH PRIORITIES. 132 00:05:09,880 --> 00:05:14,120 AS AN ADVISORY COMMITTEE, THE 133 00:05:14,120 --> 00:05:16,360 TAC'S ROLE IS TO PROVIDE A FORUM 134 00:05:16,360 --> 00:05:18,320 FOR MEETINGS BETWEEN ELECTED 135 00:05:18,320 --> 00:05:20,280 TRIBAL OFFICIALS AND NIH 136 00:05:20,280 --> 00:05:21,680 OFFICIALS TO EXCHANGE 137 00:05:21,680 --> 00:05:24,360 INFORMATION ABOUT NIH RESEARCH 138 00:05:24,360 --> 00:05:26,760 AND TRAINING POLICIES, PROGRAMS, 139 00:05:26,760 --> 00:05:31,480 PRIORITIES, AND OTHER ACTIVITIES 140 00:05:31,480 --> 00:05:32,920 THAT AFFECT AI/AN POPULATIONS. 141 00:05:32,920 --> 00:05:35,120 AS WE COME TO THE END OF THIS 142 00:05:35,120 --> 00:05:37,320 CALENDAR YEAR ISSUES I WOULD 143 00:05:37,320 --> 00:05:39,920 LIKE TO THANK EACH OF YOU FOR 144 00:05:39,920 --> 00:05:40,600 YOUR PARTICIPATIONOT TAC. 145 00:05:40,600 --> 00:05:45,520 WE APPRECIATE THE TIME AND YOUR 146 00:05:45,520 --> 00:05:46,480 WILLINGNESS TO HELP NIH IMPROVE 147 00:05:46,480 --> 00:05:50,720 THE HEALTH OF TRIBAL COMMUNITIES 148 00:05:50,720 --> 00:05:51,360 THROUGH BIOMEDICAL RESEARCH. 149 00:05:51,360 --> 00:05:52,760 WE LOOK FORWARD TO ANOTHER 150 00:05:52,760 --> 00:05:56,640 PRODUCTIVE NEW YEAR AS WE START 151 00:05:56,640 --> 00:05:58,600 2023. 152 00:05:58,600 --> 00:05:59,600 THANK YOU. 153 00:05:59,600 --> 00:06:01,040 >>THANK YOU DR. EISINGER. 154 00:06:01,040 --> 00:06:02,360 I HAVE 1 MORE ITEM OF BUSINESS 155 00:06:02,360 --> 00:06:05,560 TO TAKE CARE OF BEFORE WE HAVE 156 00:06:05,560 --> 00:06:08,800 THE DISCUSSION WITH DR. TABAK. 157 00:06:08,800 --> 00:06:09,920 SO THE NIH TRIBAL ADVISORY 158 00:06:09,920 --> 00:06:12,000 COMMITTEE OPERATES IN,A CORDANCE 159 00:06:12,000 --> 00:06:14,280 WITH THE FEDERAL ADVISORY 160 00:06:14,280 --> 00:06:16,520 COMMITTEE ACT ALSO KNOWN AS FACA 161 00:06:16,520 --> 00:06:17,800 WHICH GOVERNS HOW FEDERAL 162 00:06:17,800 --> 00:06:20,840 AGENCIES MANAGE AND USE ADVISORY 163 00:06:20,840 --> 00:06:21,520 COMMITTEES TO OBTAIN PUBLIC 164 00:06:21,520 --> 00:06:25,160 INPUT AND UNDER THE STATUTORY 165 00:06:25,160 --> 00:06:28,960 EXEMPT TO FA CA FOUND IN THE 166 00:06:28,960 --> 00:06:31,080 UNMONITORIDATES REFORM ACT OF 167 00:06:31,080 --> 00:06:34,600 1985, THE NIH TAC IS OPERATES AS 168 00:06:34,600 --> 00:06:36,040 A NONFACA, AND THE EXEMPTION 169 00:06:36,040 --> 00:06:38,680 APPLIES TO THE TAC ONLY WHEN A 2 170 00:06:38,680 --> 00:06:39,640 PART TEST IS MET. 171 00:06:39,640 --> 00:06:42,480 THE FIRST PART OF THIS 2 PART 172 00:06:42,480 --> 00:06:45,240 TEST IS THAT MEETINGS ARE HELD 173 00:06:45,240 --> 00:06:46,760 EXCLUSIVELY BETWEEN FEDERAL 174 00:06:46,760 --> 00:06:48,760 OFFICIALS AND ELECTED OFFICERS 175 00:06:48,760 --> 00:06:49,960 OF TRIBAL GOVERNMENTS OR 176 00:06:49,960 --> 00:06:50,760 DESIGNATED EMPLOYEES WITH THE 177 00:06:50,760 --> 00:06:53,320 AUTHORITY TO ACT ON THEIR BEHALF 178 00:06:53,320 --> 00:06:55,440 WHILE ACTING IN THEIR OFFICIAL 179 00:06:55,440 --> 00:06:56,320 CAPACITIES AND SECOND SUCH 180 00:06:56,320 --> 00:06:57,840 MEETINGS ARE SOLELY FOR THE 181 00:06:57,840 --> 00:06:59,800 PURPOSE OF EXCHANGE OF 182 00:06:59,800 --> 00:07:01,440 INFORMATION OR ADVICE RELATING 183 00:07:01,440 --> 00:07:02,760 TO THE MANAGEMENT OR 184 00:07:02,760 --> 00:07:05,360 IMPLEMENTATION OF FEDERAL 185 00:07:05,360 --> 00:07:06,000 PROGRAMS, ESTABLISHED PURSUANT 186 00:07:06,000 --> 00:07:12,920 TO THE PUBLIC LAW THAT 187 00:07:12,920 --> 00:07:17,240 EXPLICITEY OR INHERENTLY SHARE 188 00:07:17,240 --> 00:07:17,480 LAWS. 189 00:07:17,480 --> 00:07:19,920 THE FACA IS AN ATTEMPT TO 190 00:07:19,920 --> 00:07:21,080 FACILITATE COMMUNICATION BETWEEN 191 00:07:21,080 --> 00:07:24,360 FEDERAL GOVERNMENTS AND TRIBAL 192 00:07:24,360 --> 00:07:25,240 GOVERNMENTS TO PROMOTE 193 00:07:25,240 --> 00:07:25,880 INTERGOVERNMENTAL CONSULTATION 194 00:07:25,880 --> 00:07:28,120 SO WITH THE FACT THAT NIH MUST 195 00:07:28,120 --> 00:07:33,400 ADHERE TO THE GUIDANCE BY THE 196 00:07:33,400 --> 00:07:35,360 OFFICE OF MANAGEMENT AND BUDGET, 197 00:07:35,360 --> 00:07:38,040 ALSO KNOWN AS OMB, AS WELL AS 198 00:07:38,040 --> 00:07:40,480 HOW THESE NACA COMMITTEES 199 00:07:40,480 --> 00:07:40,800 OPERATE. 200 00:07:40,800 --> 00:07:42,840 PLEASE NOTE THESE VOTES ARE 201 00:07:42,840 --> 00:07:45,760 FOLLOWING AND ATHAT THE NIH 202 00:07:45,760 --> 00:07:48,520 DELEGATES CAN SEEK TIME TO THEIR 203 00:07:48,520 --> 00:07:51,000 ALTERNATES TO SPEAK, THEY CAN'T 204 00:07:51,000 --> 00:07:52,520 SEEK TIME TO MEMBER ADVISORS OR 205 00:07:52,520 --> 00:07:56,560 MEMBERS OF THE PUBLIC. 206 00:07:56,560 --> 00:07:59,400 TECHNICAL ADVISORS ARE NOT PART 207 00:07:59,400 --> 00:08:04,120 OF THE GROUP, AND THEY ONLY 208 00:08:04,120 --> 00:08:07,760 SERVE AS THEM ON THE COUNCIL. 209 00:08:07,760 --> 00:08:08,760 THE FEDERAL EMPLOYEES MAY 210 00:08:08,760 --> 00:08:14,280 ATTEND, SPEAK AND PARTICIPATE IN 211 00:08:14,280 --> 00:08:16,280 UMR FACA MEETINGS AS NEEDED AND 212 00:08:16,280 --> 00:08:16,640 AS APPROPRIATE. 213 00:08:16,640 --> 00:08:18,680 AND MEMBERS OF THE PUBLIC MAY 214 00:08:18,680 --> 00:08:19,800 ATTEND THE MEETING BUT ARE ONLY 215 00:08:19,800 --> 00:08:22,640 ABLE TO OBSERVE AND MAY NOT 216 00:08:22,640 --> 00:08:23,600 PARTICIPATE IN ANY WAY. 217 00:08:23,600 --> 00:08:25,960 AND IF THE NIH FEDERAL OR TRIBAL 218 00:08:25,960 --> 00:08:28,600 ADVISORY COMMITTEE DOES NOT 219 00:08:28,600 --> 00:08:31,080 COMPLY WITH FACA, ALL COMMITTEE 220 00:08:31,080 --> 00:08:32,360 FINDINGS, CONCLUSIONS, 221 00:08:32,360 --> 00:08:33,920 RECOMMENDATIONS MAY BE 222 00:08:33,920 --> 00:08:35,640 INVALIDATED AND THE NIH MAY BE 223 00:08:35,640 --> 00:08:37,320 BAR FRIDAY USING ANY OF THE 224 00:08:37,320 --> 00:08:38,240 COMMITTEE RECOMMENDATIONS AND 225 00:08:38,240 --> 00:08:40,120 THAT COULD JEOP ARD ICE PAST AND 226 00:08:40,120 --> 00:08:42,080 FUTURE ACTIONS OF THE TAC. 227 00:08:42,080 --> 00:08:43,360 THUS WE RESPECTFULLY ASK YOU TO 228 00:08:43,360 --> 00:08:44,760 FOLLOW THE GUIDELINES AND 229 00:08:44,760 --> 00:08:46,360 MAINTAIN THE STATUS AND 230 00:08:46,360 --> 00:08:48,920 INTEGRITY OF THE NIH TRIBAL 231 00:08:48,920 --> 00:08:49,560 ADVISORY COMMITTEE AND THANK YOU 232 00:08:49,560 --> 00:08:51,120 VERY MUCH FOR THAT FINAL FORM OF 233 00:08:51,120 --> 00:08:53,080 BUSINESS AND NOW, I WOULD LIKE 234 00:08:53,080 --> 00:08:56,520 TO HAND IT OFF TO AND INTRODUCE 235 00:08:56,520 --> 00:09:01,320 OUR DIRECTOR OF THE NIH 236 00:09:01,320 --> 00:09:02,080 DR. LARRY TABA K. 237 00:09:02,080 --> 00:09:03,840 >>THANK YOU VERY MUCH, DAVE. 238 00:09:03,840 --> 00:09:07,800 I APPRECIATE THE OPPORTUNITY TO 239 00:09:07,800 --> 00:09:08,560 SEE EVERYBODY TODAY. 240 00:09:08,560 --> 00:09:10,680 THOSE OF YOU WHO I'VE NOT YET 241 00:09:10,680 --> 00:09:12,680 MET, I'M PRIVILEGED TO BE 242 00:09:12,680 --> 00:09:17,120 PERFORMING THE DUTIES OF THE 243 00:09:17,120 --> 00:09:18,920 DIRECTOR OF NIH. 244 00:09:18,920 --> 00:09:20,040 THIS ODD PHRASEOLOGY IS BECAUSE 245 00:09:20,040 --> 00:09:22,800 OF NOTHING CALLED THE VACANCIES 246 00:09:22,800 --> 00:09:25,880 ACT WHICH SAYS THAT WHEN YOU 247 00:09:25,880 --> 00:09:29,200 HAVE A POSITION THAT IS 248 00:09:29,200 --> 00:09:30,240 PRESIDENTIAL APPOINTEE THAT HAS 249 00:09:30,240 --> 00:09:31,960 TO BE CONFIRMED BY THE UNITED 250 00:09:31,960 --> 00:09:34,120 STATES SENATE, CAN YOU HAVE AN 251 00:09:34,120 --> 00:09:39,240 ACTING DIRECTOR ONLY FOR 220 252 00:09:39,240 --> 00:09:39,480 DAYS. 253 00:09:39,480 --> 00:09:41,080 WE BLEW BY THAT IN JULY. 254 00:09:41,080 --> 00:09:43,920 AND SO WHAT THEY DO IS THEY 255 00:09:43,920 --> 00:09:48,360 CHANGE YOUR TITLE TO PERFORMING 256 00:09:48,360 --> 00:09:50,720 THE DUTIES OF AND PRESUMABLY 257 00:09:50,720 --> 00:09:52,480 THEY ALSO CHANGE SOME OF MY 258 00:09:52,480 --> 00:09:54,120 DUTIES BUT I HAVEN'T FOUND ANY 259 00:09:54,120 --> 00:09:57,200 DIFFERENCE YET, SO HERE I AM AND 260 00:09:57,200 --> 00:10:02,160 NEXT WEEK WILL BE 1 YEAR SINCE I 261 00:10:02,160 --> 00:10:04,440 TOOK OVER IN THIS ROLE. 262 00:10:04,440 --> 00:10:06,360 BUT IT'S A ROLE THAT I AM TRULY 263 00:10:06,360 --> 00:10:13,200 PRIVILEGED TO BE SERVING. 264 00:10:13,200 --> 00:10:15,680 SO AS WE HAVE DONE MOST OF THE 265 00:10:15,680 --> 00:10:16,840 MEETINGS WE'VE CONDUCTED WITH 266 00:10:16,840 --> 00:10:17,840 THE TRIBAL ADVISORY EXITEE, MOST 267 00:10:17,840 --> 00:10:19,920 OF THE TIME WILL BE FOR OPEN 268 00:10:19,920 --> 00:10:22,400 DISCUSSION BUT I DID WANT TO 269 00:10:22,400 --> 00:10:25,160 FRAME A FEW THINGS, I DID WANT 270 00:10:25,160 --> 00:10:27,280 TO DEVOTE A LITTLE BIT OF THE 271 00:10:27,280 --> 00:10:29,000 TIME JUST TO GIVE YOU AN 272 00:10:29,000 --> 00:10:30,720 OVERVIEW OF SOME OF THE 273 00:10:30,720 --> 00:10:32,480 IMPORTANT WORK THAT WE HAVE BEEN 274 00:10:32,480 --> 00:10:35,440 INVOLVED WITH IN PARTNERSHIP 275 00:10:35,440 --> 00:10:38,240 WITH OUR TRIBAL PARTNERS, AND 276 00:10:38,240 --> 00:10:42,080 THIS INCLUDES TRIBAL 277 00:10:42,080 --> 00:10:44,840 CONSULTATIONS, DATA USE ISSUES, 278 00:10:44,840 --> 00:10:47,600 DATA SCIENCE ISSUES, AND THEN 279 00:10:47,600 --> 00:10:52,240 FINALLY, JUST OUTLINE SOME OF 280 00:10:52,240 --> 00:10:54,240 THE NEW RESOURCES THAT THE NIH 281 00:10:54,240 --> 00:10:57,280 TRIBAL HEALTH RESEARCH OFFICE 282 00:10:57,280 --> 00:10:58,760 HAS AVAILABLE. 283 00:10:58,760 --> 00:11:01,360 SO WITH REGARD TO THE FIRST 284 00:11:01,360 --> 00:11:03,200 ITEM, NIH TRIBAL CONSULTATIONS, 285 00:11:03,200 --> 00:11:06,560 WE HAVE TRIED TO MAKE RESPECT 286 00:11:06,560 --> 00:11:09,480 FOR TRIBAL SOVEREIGNTY 1 OF THE 287 00:11:09,480 --> 00:11:10,720 HIGHEST PRIORITIES AT NIH. 288 00:11:10,720 --> 00:11:15,760 WE HAVE MADE A COMMITMENT TO DO 289 00:11:15,760 --> 00:11:19,400 THIS IN A VARIETY OF WAYS BUT 290 00:11:19,400 --> 00:11:21,280 OBVIOUSLY AMONG THEM IS 291 00:11:21,280 --> 00:11:25,320 ADHERENCE THROUGH TRIBAL 292 00:11:25,320 --> 00:11:25,680 CONSULTATION. 293 00:11:25,680 --> 00:11:29,200 IN MARCH OF THIS YEAR, WE 294 00:11:29,200 --> 00:11:32,360 IMPLEMENTED OUR TRIBAL 295 00:11:32,360 --> 00:11:33,760 CONSULTATION POLICY WHICH WAS 296 00:11:33,760 --> 00:11:36,720 DESIGNED TO COMPLEMENT THE 297 00:11:36,720 --> 00:11:39,680 EXISTING TRIBAL CONSULTATION 298 00:11:39,680 --> 00:11:45,760 POLICY AT THE HHS. 299 00:11:45,760 --> 00:11:48,160 THIS IS A FOUNDATIONAL DOCUMENT. 300 00:11:48,160 --> 00:11:50,480 IT LAYS OUT WHAT WE HOPE ARE 301 00:11:50,480 --> 00:11:51,480 CLEAR AND CONSISTENT PROCESSES 302 00:11:51,480 --> 00:11:58,520 FOR ALL OF NIH TO PARTICIPATE IN 303 00:11:58,520 --> 00:12:00,560 MEANINGFUL TRIBAL CONSULTATION. 304 00:12:00,560 --> 00:12:04,760 IN 2021, WE HAD 4 TRIBAL 305 00:12:04,760 --> 00:12:05,080 CONSULTATIONS. 306 00:12:05,080 --> 00:12:07,080 ONE ON OUR NATIVE AMERICAN 307 00:12:07,080 --> 00:12:10,760 RESEARCH CENTERS FOR HELP, THE 308 00:12:10,760 --> 00:12:12,120 NARCH PROGRAM FOR EVALUATION. 309 00:12:12,120 --> 00:12:15,280 THE SECOND WAS ABOUT THE NIH 310 00:12:15,280 --> 00:12:16,000 TRIBAL CONSULTATION POLICY. 311 00:12:16,000 --> 00:12:20,320 THE THIRD WAS ABOUT THE RAPID 312 00:12:20,320 --> 00:12:23,600 ACCELERATION OF DIAGNOSTICS OR 313 00:12:23,600 --> 00:12:25,480 RAD X TRIBAL DATA REPOSITORY AND 314 00:12:25,480 --> 00:12:28,920 THE FOURTH WAS ABOUT THE 315 00:12:28,920 --> 00:12:30,040 NATIONAL COVID COHORT 316 00:12:30,040 --> 00:12:38,440 COLLABORATIVE OR N3 C. 317 00:12:38,440 --> 00:12:40,400 THIS YEAR IN 2022, WE HAVE HELD 318 00:12:40,400 --> 00:12:41,720 3 VERY IMPORTANT CONSULTATIONS 319 00:12:41,720 --> 00:12:44,120 ON THE FOLLOWING INITIATIVES. 320 00:12:44,120 --> 00:12:47,680 THE FIRST ON THE HELPING TO END 321 00:12:47,680 --> 00:12:49,440 ADDICTION LONG-TERM INITIATIVE, 322 00:12:49,440 --> 00:12:54,280 THE NIH HEAL INITIATIVE. 323 00:12:54,280 --> 00:12:57,400 THE SECOND IS THE NIH STRATEGIC 324 00:12:57,400 --> 00:12:58,880 PLAN FOR TRIBAL HEALTH RESEARCH 325 00:12:58,880 --> 00:13:02,440 WHICH IS DESIGNED TO LAY OUT 326 00:13:02,440 --> 00:13:07,040 PRIORITIES FROM THE YEARS 2024, 327 00:13:07,040 --> 00:13:08,640 THROUGH 2028. 328 00:13:08,640 --> 00:13:13,720 AND THEN FINALLY, THE NIH 329 00:13:13,720 --> 00:13:21,480 IMPROVE PROGRAM WHICH STANDS FOR 330 00:13:21,480 --> 00:13:22,680 INITIATIVE FOR MATERNAL HEALTH 331 00:13:22,680 --> 00:13:23,480 CENTERS OF EXCELLENCE. 332 00:13:23,480 --> 00:13:26,080 NOW ALL MATERIALS RELATED TO 333 00:13:26,080 --> 00:13:30,680 THESE CONSULTATIONS INCLUDING 334 00:13:30,680 --> 00:13:31,880 THE FINAL REPORTS CAN BE FOUND 335 00:13:31,880 --> 00:13:34,840 ON THE TRIBAL HEALTH RESEARCH 336 00:13:34,840 --> 00:13:39,040 OFFICE WEBSITE UNDER THE TRIBAL 337 00:13:39,040 --> 00:13:39,480 CONSULTATIONS TAB. 338 00:13:39,480 --> 00:13:42,760 FOR EACH OF THESE CONSULTATIONS, 339 00:13:42,760 --> 00:13:46,680 TRIBAL LEADER INPUT HAS BEEN 340 00:13:46,680 --> 00:13:46,960 CRITICAL. 341 00:13:46,960 --> 00:13:48,440 TREMENDOUSLY INSIGHTFUL AND 342 00:13:48,440 --> 00:13:53,800 VERY, VERY HELPFUL AS NIH 343 00:13:53,800 --> 00:13:55,920 DESIGNS CUTTING EDGE PROGRAM 344 00:13:55,920 --> 00:13:57,960 IMPROVEMENTS AND INNOVATIVE 345 00:13:57,960 --> 00:13:58,520 PILOT PROGRAMS. 346 00:13:58,520 --> 00:14:01,640 SO WE THANK YOU ALL AND HOPE 347 00:14:01,640 --> 00:14:04,840 THAT YOU WILL CONTINUE TO 348 00:14:04,840 --> 00:14:06,040 PARTICIPATE IN THIS PROCESS AS 349 00:14:06,040 --> 00:14:06,600 WE MOVE AHEAD. 350 00:14:06,600 --> 00:14:09,240 WE KNOW THAT THESE CONSULTATIONS 351 00:14:09,240 --> 00:14:12,320 ARE VERY TIME CONSUMING FOR 352 00:14:12,320 --> 00:14:16,120 VERY, VERY BUSY PEOPLE. 353 00:14:16,120 --> 00:14:18,440 BUT YET WITHOUT YOUR 354 00:14:18,440 --> 00:14:19,520 PARTICIPATION WE REALLY CAN'T 355 00:14:19,520 --> 00:14:21,160 ACHIEVE THE GOALS THAT WE ARE 356 00:14:21,160 --> 00:14:22,440 SETTING OUT TO DO. 357 00:14:22,440 --> 00:14:31,840 SO I REALLY DO THANK EACH OF 358 00:14:31,840 --> 00:14:32,000 YOU. 359 00:14:32,000 --> 00:14:33,040 THE SECOND PROGRAM I WOULD LIKE 360 00:14:33,040 --> 00:14:37,640 TO DRAW YOUR ATTENTION TO ARE A 361 00:14:37,640 --> 00:14:40,080 SERIES OF DATA SCIENCE, 362 00:14:40,080 --> 00:14:41,560 ARTIFICIAL INTELLIGENCE AND 363 00:14:41,560 --> 00:14:42,960 MACHINE LEARNING EFFORTS. 364 00:14:42,960 --> 00:14:45,840 WE CONTINUE TO HEAR FROM YOUR 365 00:14:45,840 --> 00:14:48,240 COMMUNITIES THAT IT IS IMPORTANT 366 00:14:48,240 --> 00:14:52,360 FOR YOU TO MAKE DATA DRIVEN 367 00:14:52,360 --> 00:14:54,040 DECISIONS REGARDING ANY NUMBER 368 00:14:54,040 --> 00:14:54,880 OF ASPECTS OF COMMUNITY HEALTH 369 00:14:54,880 --> 00:15:01,520 THAT YOU ARE FACING. 370 00:15:01,520 --> 00:15:03,240 AND SO TOWARD THAT END, THE 371 00:15:03,240 --> 00:15:04,040 TRIBAL HEALTH RESEARCH OFFICE 372 00:15:04,040 --> 00:15:06,640 AND THE OFFICE OF DATA SCIENCE 373 00:15:06,640 --> 00:15:08,360 STRATEGY ARE COLLABORATING WITH 374 00:15:08,360 --> 00:15:11,880 THE AMERICAN INDIAN HIRE 375 00:15:11,880 --> 00:15:14,320 EDUCATION CONSORTIUM TO PILOT A 376 00:15:14,320 --> 00:15:17,840 DATA SCIENCE CURRICULUM IN 377 00:15:17,840 --> 00:15:19,200 TRIBAL COLLEGES. 378 00:15:19,200 --> 00:15:21,480 THIS COLLABORATIVE GROUP IS 379 00:15:21,480 --> 00:15:25,640 EXPLORING INNOVATIVE WAYS TO 380 00:15:25,640 --> 00:15:27,720 EXPAND THIS EFFORT THROUGH OTHER 381 00:15:27,720 --> 00:15:30,160 UMBRELLA PROGRAMS WE HAVE AT NIH 382 00:15:30,160 --> 00:15:33,840 WITH TRIBAL NATIONS INCLUDING 383 00:15:33,840 --> 00:15:34,240 THE NARCH PROGRAM. 384 00:15:34,240 --> 00:15:35,640 AND LATER TODAY, YOU WILL BE 385 00:15:35,640 --> 00:15:38,560 HEARING ABOUT ANOTHER DATA 386 00:15:38,560 --> 00:15:43,360 SCIENCE EFFORT CALLED BRIDGE TO 387 00:15:43,360 --> 00:15:44,760 AI, IT REPRESENTS ANOTHER 388 00:15:44,760 --> 00:15:46,280 COLLABORATIVE EFFORT BETWEEN THE 389 00:15:46,280 --> 00:15:49,680 OFFICE OF DATA SCIENCE STRATEGY 390 00:15:49,680 --> 00:15:52,080 AND THE TRIBAL HEALTH RESEARCH 391 00:15:52,080 --> 00:15:54,840 OFFICE WITH THE TRIBAL HEALTH 392 00:15:54,840 --> 00:15:57,560 RESEARCH OFFICE PROVIDING THE 393 00:15:57,560 --> 00:15:59,360 NECESSARY GUIDANCE ON HOW BEST 394 00:15:59,360 --> 00:16:03,640 TO EFFECTIVELY INCLUDE TRIBAL 395 00:16:03,640 --> 00:16:04,960 COMMUNITIES TO THESE EFFORTS. 396 00:16:04,960 --> 00:16:06,360 WE HOPE YOU WILL ALL AGREE THAT 397 00:16:06,360 --> 00:16:07,880 THESE ARE EFFORTS THAT ARE WELL 398 00:16:07,880 --> 00:16:12,560 WORTH THE TIME AND ENERGY AS 399 00:16:12,560 --> 00:16:15,000 THIS REALLY REPRESENTS A VERY 400 00:16:15,000 --> 00:16:18,000 IMPORTANT FUTURE GROWTH AREA FOR 401 00:16:18,000 --> 00:16:19,280 ALL OF MEDICAL RESEARCH AND WE 402 00:16:19,280 --> 00:16:21,400 OF COURSE WANT YOU THERE AS OUR 403 00:16:21,400 --> 00:16:22,520 PARTNERS THERE, RIGHT IN THE 404 00:16:22,520 --> 00:16:23,720 MIDDLE OF THE MIX. 405 00:16:23,720 --> 00:16:27,360 NOW THE ADVANCED TRAINING AND 406 00:16:27,360 --> 00:16:32,600 ARTIFICIAL INTELLIGENCE FOR 407 00:16:32,600 --> 00:16:34,000 PRECISION NUTRITION SCIENCE 408 00:16:34,000 --> 00:16:35,840 RESEARCH, INSTITUTIONAL RESEARCH 409 00:16:35,840 --> 00:16:40,040 TRAINING PROGRAMS IS A NEW 410 00:16:40,040 --> 00:16:40,400 INITIATIVE. 411 00:16:40,400 --> 00:16:41,800 THERE WAS A FUNDING OPPORTUNITY 412 00:16:41,800 --> 00:16:44,240 AND ANNOUNCEMENT THAT WILL 413 00:16:44,240 --> 00:16:48,000 INVITE APPLICATIONS FOR NEW 414 00:16:48,000 --> 00:16:49,360 INSTITUTIONAL TRAINING PROGRAMS 415 00:16:49,360 --> 00:16:54,480 AT EITHER THE PREDOCTORAL AND/OR 416 00:16:54,480 --> 00:16:59,000 POST DOCTORAL LEVEL, FOCUSING ON 417 00:16:59,000 --> 00:17:00,080 INTEGRATING PRECISION NUTRITION, 418 00:17:00,080 --> 00:17:03,840 ARTIFICIAL INTELLIGENCE, MACHINE 419 00:17:03,840 --> 00:17:06,760 LEARNING, SYSTEMS BIOLOGY, 420 00:17:06,760 --> 00:17:10,040 SYSTEMS SCIENCE, BIG DATA AND 421 00:17:10,040 --> 00:17:12,960 COMPUTATIONAL ANALYTICS AND THE 422 00:17:12,960 --> 00:17:17,800 REASON THAT WE ARE MAKING THESE 423 00:17:17,800 --> 00:17:20,280 INVESTMENTS IN OUR TRAINEE 424 00:17:20,280 --> 00:17:23,280 POPULATION IS THAT WE WANT TO 425 00:17:23,280 --> 00:17:24,280 BUILD A WORKFORCE THAT IS GOING 426 00:17:24,280 --> 00:17:30,280 TO BE ABLE TO USE THE GROWING 427 00:17:30,280 --> 00:17:33,000 DATA RESOURCES TO ADDRESS VERY 428 00:17:33,000 --> 00:17:35,080 COMPLEX AREAS IN NUTRITION 429 00:17:35,080 --> 00:17:38,600 SCIENCE GOING FORWARD. 430 00:17:38,600 --> 00:17:41,680 AND AGAIN, IT'S REALLY OUR HOPE 431 00:17:41,680 --> 00:17:44,000 THAT SOME OF YOUR ORGANIZATIONS, 432 00:17:44,000 --> 00:17:47,160 SOME OF YOUR COMMUNITIES WILL 433 00:17:47,160 --> 00:17:48,520 WISH TO PARTICIPATE IN THESE. 434 00:17:48,520 --> 00:17:53,320 IT'S PART OF A LARGER ISSUE OF 435 00:17:53,320 --> 00:17:55,520 THE CURRENT ADMINISTRATION ON 436 00:17:55,520 --> 00:17:57,320 HUNGER, NUTRITION AND HEALTH AND 437 00:17:57,320 --> 00:18:01,200 OF THE LINK TO THE FUNDING 438 00:18:01,200 --> 00:18:02,760 OPPORTUNITY REQUEST FOR 439 00:18:02,760 --> 00:18:05,400 APPLICATIONS CAN BE FOUND ON THE 440 00:18:05,400 --> 00:18:13,400 TRIBAL HEALTH RESEARCH OFFICE 441 00:18:13,400 --> 00:18:13,640 WEBSITE. 442 00:18:13,640 --> 00:18:15,880 NEXT I WOULD LIKE TO TURN MY 443 00:18:15,880 --> 00:18:17,040 ATTENTION TO THE RESPONSIBLE 444 00:18:17,040 --> 00:18:18,120 MANAGEMENT AND SHARING OF 445 00:18:18,120 --> 00:18:21,120 AMERICAN INDIAN AND ALASKA 446 00:18:21,120 --> 00:18:21,640 NATIVE PARTICIPANT DATA. 447 00:18:21,640 --> 00:18:24,120 THIS IS A TOPIC THAT WE HAVE 448 00:18:24,120 --> 00:18:26,200 DISCUSSED ON A NUMBER OF 449 00:18:26,200 --> 00:18:28,760 OCCASIONS BECAUSE OF ITS 450 00:18:28,760 --> 00:18:29,520 IMPORTANCE. 451 00:18:29,520 --> 00:18:32,160 AND JUST TO REITERATE, WE 452 00:18:32,160 --> 00:18:33,480 APPRECIATE HOW VITALLY 453 00:18:33,480 --> 00:18:37,520 SIGNIFICANT IT IS FOR US TO 454 00:18:37,520 --> 00:18:38,800 RESPONSIBLY MANAGE IN HOW WE 455 00:18:38,800 --> 00:18:40,760 SHARE AND MANAGE DATA FROM 456 00:18:40,760 --> 00:18:45,320 AMERICAN INDIAN AND ALASKA 457 00:18:45,320 --> 00:18:46,360 NATIVE PARTICIPANTS. 458 00:18:46,360 --> 00:18:49,080 BACK IN 2020 IN OCTOBER NIH 459 00:18:49,080 --> 00:18:52,840 ISSUED THE NIH POLICY FOR DATA 460 00:18:52,840 --> 00:18:54,760 MANAGEMENT WHICH TAKES EFFECT 461 00:18:54,760 --> 00:19:00,520 THIS COMING JANUARY IN 2023, THE 462 00:19:00,520 --> 00:19:03,720 OFFICE OF SCIENCE POLICY HAS 463 00:19:03,720 --> 00:19:05,560 FINALIZED SUPPLEMENTAL 464 00:19:05,560 --> 00:19:06,280 INFORMATION RELATED TO 465 00:19:06,280 --> 00:19:07,560 RESPONSIBLE MANAGEMENT AND 466 00:19:07,560 --> 00:19:11,400 SHARING OF AMERICAN INDIAN AND 467 00:19:11,400 --> 00:19:13,480 ALASKA NATIVE PARTICIPANT DATA 468 00:19:13,480 --> 00:19:15,760 AND AS I'M SURE YOU REMEMBER, 469 00:19:15,760 --> 00:19:17,960 THIS DOCUMENT WAS CO DEVELOPED 470 00:19:17,960 --> 00:19:19,440 WITH THE TRAVEL ADVISORY 471 00:19:19,440 --> 00:19:23,240 COMMITTEE AND WAS DISTRIBUTED TO 472 00:19:23,240 --> 00:19:26,520 TRIBAL LEADERS FOR THEIR FINAL 473 00:19:26,520 --> 00:19:27,600 COMMENT IN EARLY 2022. 474 00:19:27,600 --> 00:19:31,120 THE OFFICE OF SCIENCE POLICY 475 00:19:31,120 --> 00:19:34,400 RELEASED THE FINAL PUBLICATION 476 00:19:34,400 --> 00:19:35,520 IN SEPTEMBER OF 2022. 477 00:19:35,520 --> 00:19:37,520 THEY HAVE SINCE RIGHT AFTERWARDS 478 00:19:37,520 --> 00:19:41,720 HELD A WEBINAR PUBLICLY TO HELP 479 00:19:41,720 --> 00:19:45,720 INFORM THE BROADER RESEARCH 480 00:19:45,720 --> 00:19:49,920 COMMUNITY ABOUT THESE 481 00:19:49,920 --> 00:19:50,760 RESPONSIBILITIES AND TO ANSWER 482 00:19:50,760 --> 00:19:56,840 QUESTIONS ABOUT THE NEW POLICY. 483 00:19:56,840 --> 00:19:58,320 THE DOCUMENT INCLUDES 484 00:19:58,320 --> 00:19:59,720 CONSIDERATIONS AND BEST 485 00:19:59,720 --> 00:20:02,040 PRACTICES FOR NIH SPONSORED 486 00:20:02,040 --> 00:20:04,320 RESEARCHERS WORKING WITH TRIBAL 487 00:20:04,320 --> 00:20:07,760 NATIONS AND BY WAY OF EXAMPLE, 488 00:20:07,760 --> 00:20:09,920 EMPHASIZING THE IMPORTANCE OF 489 00:20:09,920 --> 00:20:11,280 RESPECT FOR TRIBAL SOVEREIGNTY, 490 00:20:11,280 --> 00:20:15,720 THE NEED TO DO PROACTIVE 491 00:20:15,720 --> 00:20:18,360 ENGAGEMENT WITH TRIBAL NATIONS, 492 00:20:18,360 --> 00:20:20,760 THE VALUE AND NECESSITY OF 493 00:20:20,760 --> 00:20:23,240 ESTABLISHING MUTUAL GOALS FOR 494 00:20:23,240 --> 00:20:27,600 DATA MANAGE AM AND SHARING AND 495 00:20:27,600 --> 00:20:29,000 THEN FINALLY TO ADDRESS A DATA 496 00:20:29,000 --> 00:20:31,600 MANAGEMENT AND SHARING PLANS IN 497 00:20:31,600 --> 00:20:34,440 THE INFORMED CONSENT PROCESS. 498 00:20:34,440 --> 00:20:37,800 THE NOTICE OF ALL OF THIS AGAIN 499 00:20:37,800 --> 00:20:40,760 CAN BE FOUND ON THE TRIBAL 500 00:20:40,760 --> 00:20:51,320 HEALTH RESEARCH OFFICE WEBSITE. 501 00:20:52,480 --> 00:20:55,600 NOW I'D LIKE TO MENTION DATA 502 00:20:55,600 --> 00:20:56,960 COORDINATION AND WE'VE ALL DEALT 503 00:20:56,960 --> 00:20:58,880 WITH THIS EVERY SINGLE DAY, WE 504 00:20:58,880 --> 00:21:01,560 ARE FACED WITH A LARGER VOLUME 505 00:21:01,560 --> 00:21:03,800 OF DATA GROWING LARGER AND 506 00:21:03,800 --> 00:21:05,200 LARGER OVER TIME AND RESEARCHERS 507 00:21:05,200 --> 00:21:07,440 HAVE RESPONDED IN MANY INSTANCES 508 00:21:07,440 --> 00:21:12,840 BY ESTABLISHING DATA HUBS TO 509 00:21:12,840 --> 00:21:14,120 COLLECT AND SHARE DATA AND MORE 510 00:21:14,120 --> 00:21:16,080 AND MORE SO CALLED BIG DATA 511 00:21:16,080 --> 00:21:19,000 PROGRAMS ARE BEING DEVELOPED 512 00:21:19,000 --> 00:21:19,280 GLOBALLY. 513 00:21:19,280 --> 00:21:22,640 WHAT HAS BECOME ABSOLUTELY CLEAR 514 00:21:22,640 --> 00:21:24,360 IS THAT NIH AND TRIBAL NATIONS 515 00:21:24,360 --> 00:21:27,760 NEED TO WORK TOGETHER IN 516 00:21:27,760 --> 00:21:30,920 COLLABORATION TO DEVELOP 517 00:21:30,920 --> 00:21:32,560 STRATEGIES THAT GUIDE HOW SO 518 00:21:32,560 --> 00:21:34,920 CALLED BIG DATA PROGRAMS CAN 519 00:21:34,920 --> 00:21:38,920 BEST WORK WITH TRIBAL NATIONS. 520 00:21:38,920 --> 00:21:43,520 OUR LEADERSHIP HAS BEGUN 521 00:21:43,520 --> 00:21:45,480 DISCUSSIONS ABOUT DEVELOPING A 522 00:21:45,480 --> 00:21:46,560 BEST PRACTICES DOCUMENT, THE 523 00:21:46,560 --> 00:21:50,040 TRIBAL DAT AND NIH REPOSITORIES 524 00:21:50,040 --> 00:21:56,320 AND WE ARE HOPE EMPLOY THAT BY 525 00:21:56,320 --> 00:21:57,880 WORKING WITH BOTH THE TRIBAL 526 00:21:57,880 --> 00:21:58,960 ADVISORY COMMITTEE AND THE 527 00:21:58,960 --> 00:22:00,360 TRIBAL PROCESSES THAT WE WILL BE 528 00:22:00,360 --> 00:22:05,920 ABLE TO FINALIZE THIS GUIDANCE 529 00:22:05,920 --> 00:22:06,760 AND CALENDAR YEAR 2023. 530 00:22:06,760 --> 00:22:09,800 JUST A FEW OTHER ITEMS BEFORE WE 531 00:22:09,800 --> 00:22:14,440 OPEN IT UP FOR COMMENT AND 532 00:22:14,440 --> 00:22:14,720 DISCUSSION. 533 00:22:14,720 --> 00:22:18,160 WE HAVE JUST CONCLUDED THE 2022 534 00:22:18,160 --> 00:22:20,640 NATIONAL NATIVE AMERICAN 535 00:22:20,640 --> 00:22:21,400 HERITAGE MONTH. 536 00:22:21,400 --> 00:22:24,160 NIH LOOKS FORWARD EVERY YEAR TO 537 00:22:24,160 --> 00:22:25,280 CELEBRATING THE OCCASION REALLY 538 00:22:25,280 --> 00:22:27,480 AS A UNIQUE OPPORTUNITY TO 539 00:22:27,480 --> 00:22:30,920 HIGHLIGHT AMERICAN INDIAN AND 540 00:22:30,920 --> 00:22:32,280 ALASKA NATIVE CULTURE, INGENUITY 541 00:22:32,280 --> 00:22:35,120 AND MANY CONTRIBUTIONS TO 542 00:22:35,120 --> 00:22:37,960 BIOMEDICAL RESEARCH. 543 00:22:37,960 --> 00:22:40,160 THIS NOVEMBER WE COMMEMORATED 544 00:22:40,160 --> 00:22:42,040 NATIVE AMERICAN HERITAGE MONTH 545 00:22:42,040 --> 00:22:43,640 WITH AN ANNUAL GUEST LECTURE, IT 546 00:22:43,640 --> 00:22:46,120 WAS HELDOT 16 GHTS OF NOVEMBER, 547 00:22:46,120 --> 00:22:50,040 THAT FOCUSED ON COMMUNITY-DRIVEN 548 00:22:50,040 --> 00:22:51,000 ENVIRONMENT AT HEALTH RESEARCH 549 00:22:51,000 --> 00:22:52,760 THAT IS TAKING PLACE IN ALASKA. 550 00:22:52,760 --> 00:22:56,600 I HOPE YOU HAD A CHANCE TO VIEW 551 00:22:56,600 --> 00:23:01,920 THIS EVENT IN REALTIME BUT IF 552 00:23:01,920 --> 00:23:03,000 YOU'RE SCHEDULE DID NOT PERMIT 553 00:23:03,000 --> 00:23:05,560 THAT, CAN YOU VISIT THE TRIBAL 554 00:23:05,560 --> 00:23:07,400 HEALTH RESEARCH ON THIS WEBSITE. 555 00:23:07,400 --> 00:23:12,400 THE EVENT WAS RECORDED AND YOU 556 00:23:12,400 --> 00:23:15,920 CAN LOOK AT IT AT YOUR LEISURE. 557 00:23:15,920 --> 00:23:17,600 FINALLY, I JUST WANT TO 558 00:23:17,600 --> 00:23:19,480 HIGHLIGHT A FEW NEW RESOURCES 559 00:23:19,480 --> 00:23:22,440 FROM THE NIH'S TRIBAL HEALTH 560 00:23:22,440 --> 00:23:24,560 RESEARCH OFFICE. 561 00:23:24,560 --> 00:23:26,960 THE FIRST IS HONORING HEALTH 562 00:23:26,960 --> 00:23:30,040 NEWS LETTER, BOTH IN THE SUMMER 563 00:23:30,040 --> 00:23:33,280 AND FALL OF 2022, HONORING 564 00:23:33,280 --> 00:23:34,960 HEALTH ENEWS LETTERS, INCLUDED 565 00:23:34,960 --> 00:23:35,840 IMPORTANT INFORMATION FOR 566 00:23:35,840 --> 00:23:38,680 AMERICAN INDIANS AND ALASKA 567 00:23:38,680 --> 00:23:39,280 NATIVES. 568 00:23:39,280 --> 00:23:40,320 THIS NEWS LETTER'S BEEN AROUND 569 00:23:40,320 --> 00:23:43,400 FOR A WHILE BUT IT'S NOW CURATED 570 00:23:43,400 --> 00:23:44,520 BY THE TRIBAL HEALTH RESEARCH 571 00:23:44,520 --> 00:23:48,720 OFFICE AND IT WAS RECENTLY 572 00:23:48,720 --> 00:23:50,840 EXPANDED TO INCLUDE NIH HEALTH 573 00:23:50,840 --> 00:23:52,240 TOPICS, RESOURCES AND EVENTS AND 574 00:23:52,240 --> 00:23:53,800 TRAINING AND FUNDING 575 00:23:53,800 --> 00:23:54,160 OPPORTUNITIES. 576 00:23:54,160 --> 00:23:59,640 SO IT MAY BE A VERY 577 00:23:59,640 --> 00:24:00,360 CONVENIENT 578 00:24:00,360 --> 00:24:02,440 WAY FOR TRIBAL LEADERS OR STAFF 579 00:24:02,440 --> 00:24:04,400 MEMBERS TO BE UP TO DATE ON WHAT 580 00:24:04,400 --> 00:24:05,240 IS AVAILABLE. 581 00:24:05,240 --> 00:24:07,880 AND YOU CAN SUBSCRIBE TO THIS 582 00:24:07,880 --> 00:24:09,800 NEWS LETTER THROUGH THE TRIBAL 583 00:24:09,800 --> 00:24:14,440 HEALTH RESEARCH OFFICE WEBSITE. 584 00:24:14,440 --> 00:24:17,520 EARLY EARLY THIS YEAR, THE 585 00:24:17,520 --> 00:24:21,240 TRIBAL RESEARCH HEALTH OFFICE 586 00:24:21,240 --> 00:24:23,320 JOINED LINKEDin TO HELP 587 00:24:23,320 --> 00:24:24,720 ESTABLISH AN ONLINE COMMUNITY OF 588 00:24:24,720 --> 00:24:25,320 PROFESSIONALS AND STUDENTS 589 00:24:25,320 --> 00:24:29,720 WORKING ON OR INTERESTED IN 590 00:24:29,720 --> 00:24:30,760 TRIBAL HEALTH RESEARCH, DO MEAS 591 00:24:30,760 --> 00:24:31,920 TAKE THE OPPORTUNITY FOR THOSE 592 00:24:31,920 --> 00:24:34,440 OF WHO YOU PARTICIPATE IN 593 00:24:34,440 --> 00:24:38,320 LINKEDin TO LOOK UP THE TRIBAL 594 00:24:38,320 --> 00:24:40,400 HEALTH RESEARCH OFFICE ON THIS 595 00:24:40,400 --> 00:24:44,720 FORUM AND FOLLOW IT FOR 596 00:24:44,720 --> 00:24:45,920 INFORMATION ABOUT NIH, 597 00:24:45,920 --> 00:24:47,760 BIOMEDICAL RESEARCH, FUNDING, 598 00:24:47,760 --> 00:24:48,720 EMPLOYMENT AND INTERNSHIP, 599 00:24:48,720 --> 00:24:51,720 OPPORTUNITIES AND EVENTS AND 600 00:24:51,720 --> 00:24:54,680 OTHER ACTIVITIES. 601 00:24:54,680 --> 00:24:56,800 SO JUST TO CLOSE, WE ARE 602 00:24:56,800 --> 00:24:58,400 CONSTANTLY TRYING TO IMPROVE OUR 603 00:24:58,400 --> 00:25:03,360 COMMUNICATION AND COLLABORATION 604 00:25:03,360 --> 00:25:04,600 WITH TRIBAL NATIONS. 605 00:25:04,600 --> 00:25:06,160 YOU KNOW I APPRECIATE--IT'S A 606 00:25:06,160 --> 00:25:11,080 CONTINUED WORK IN PROGRESS. 607 00:25:11,080 --> 00:25:14,160 I'VE REALLY ONLY COVERED A SMALL 608 00:25:14,160 --> 00:25:15,320 SAMPLING OF THE OVERALL EFFORTS 609 00:25:15,320 --> 00:25:17,160 OF OUR AGENCY IN OUR ONGOING 610 00:25:17,160 --> 00:25:18,360 COMMITMENT TO WORKING ON 611 00:25:18,360 --> 00:25:18,840 RESEARCH AND TRAINING 612 00:25:18,840 --> 00:25:21,360 OPPORTUNITIES FOR TRIBAL 613 00:25:21,360 --> 00:25:21,560 NATIONS. 614 00:25:21,560 --> 00:25:23,760 OUR GOAL IS TO SUPPORT THE KIND 615 00:25:23,760 --> 00:25:25,840 OF BIOMEDICAL AND SOCIAL SCIENCE 616 00:25:25,840 --> 00:25:28,240 RESEARCH THAT FINDS SOLUTIONS 617 00:25:28,240 --> 00:25:31,440 THAT REDUCES THE HEALTH 618 00:25:31,440 --> 00:25:32,320 DISPARITIES AND INIQUITIES THAT 619 00:25:32,320 --> 00:25:34,400 EXIST AND THAT ULTIMATELY 620 00:25:34,400 --> 00:25:35,680 IMPROVES HEALTH WHICH OF COURSE 621 00:25:35,680 --> 00:25:37,000 GETS US BETTER PREPARED FOR 622 00:25:37,000 --> 00:25:39,720 ANYTHING THAT THE FUTURE HOLDS 623 00:25:39,720 --> 00:25:40,320 FOR US. 624 00:25:40,320 --> 00:25:43,600 SO I WANT TO THANK YOU ALL FOR 625 00:25:43,600 --> 00:25:46,360 THE OPPORTUNITY FOR ME TO SHARE 626 00:25:46,360 --> 00:25:46,680 THESE UPDATES. 627 00:25:46,680 --> 00:25:50,120 I LOOK FORWARD TO THE DISCUSSION 628 00:25:50,120 --> 00:25:52,440 THAT WILL FOLLOW AND LET ME TURN 629 00:25:52,440 --> 00:25:55,160 IT BACK TO THE CHAIR PERSON OF 630 00:25:55,160 --> 00:26:05,440 THE COMMITTEE. 631 00:26:09,320 --> 00:26:10,160 THANK YOU. 632 00:26:10,160 --> 00:26:11,320 >>GOOD MORNING AND GOOD 633 00:26:11,320 --> 00:26:13,280 AFTERNOON, EVERYONE. 634 00:26:13,280 --> 00:26:15,720 THANK YOU DR. TABAK, THIS IS 635 00:26:15,720 --> 00:26:17,560 [INDISCERNIBLE] WITH THE IT, AC, 636 00:26:17,560 --> 00:26:19,760 THANK YOU SO MUCH FOR JOINING US 637 00:26:19,760 --> 00:26:20,360 THIS MORNING. 638 00:26:20,360 --> 00:26:21,840 I KNOW YOUR TIME IS VALUABLE AND 639 00:26:21,840 --> 00:26:23,320 WE ALL APPRECIATE THAT YOU ARE 640 00:26:23,320 --> 00:26:26,320 ABLE TO SPEND THIS TIME WITH US. 641 00:26:26,320 --> 00:26:28,360 AND I REALLY DO APPRECIATE THE 642 00:26:28,360 --> 00:26:29,560 KEY POINTS THAT YOU BROUGHT UP 643 00:26:29,560 --> 00:26:32,120 BECAUSE THESE ARE REALLY THE KEY 644 00:26:32,120 --> 00:26:33,520 AREAS THAT WE WANTED TO TALK TO 645 00:26:33,520 --> 00:26:35,160 YOU ABOUT SO YOU'RE RIGHT ON 646 00:26:35,160 --> 00:26:35,360 POINT. 647 00:26:35,360 --> 00:26:39,240 SO WE'RE ALL ON THE SAME WAVE 648 00:26:39,240 --> 00:26:40,320 LENGTH HERE ESPECIALLY STARTING 649 00:26:40,320 --> 00:26:41,840 WITH THE TRIBAL CONSULTATION, WE 650 00:26:41,840 --> 00:26:43,840 WERE JUST TALKING ABOUT THAT 651 00:26:43,840 --> 00:26:45,920 TODAY, THIS MORNING AND ABOUT 652 00:26:45,920 --> 00:26:46,960 THE PRESIDENT'S TRIBAL SUMMIT 653 00:26:46,960 --> 00:26:48,480 THAT HE HAD LAST WEEK TO INSURE 654 00:26:48,480 --> 00:26:51,160 THAT YOU KNOW WE CONTINUE OUR 655 00:26:51,160 --> 00:26:53,680 TRIBAL CONSULTATION, BEING THAT 656 00:26:53,680 --> 00:26:55,240 NIH IS SO BIG, SO MANY CENTERS 657 00:26:55,240 --> 00:26:58,120 AND SO MANY INSTITUTIONS AND SO 658 00:26:58,120 --> 00:26:59,720 MUCH GOING ON THAT WE NEED TO 659 00:26:59,720 --> 00:27:03,480 CONTINUE TO HAVE THESE TRIBAL 660 00:27:03,480 --> 00:27:04,160 CONSULTATIONS AND INSURE THAT 661 00:27:04,160 --> 00:27:06,160 ALL OF THESE DIFFERENT AREAS OF 662 00:27:06,160 --> 00:27:07,360 RESEARCH THAT ARE HAPPENING AND 663 00:27:07,360 --> 00:27:10,080 THAT WE CONTINUE WITH OUR TRIBAL 664 00:27:10,080 --> 00:27:16,440 CONSULTATION AND HAVE THE TAC 665 00:27:16,440 --> 00:27:19,200 INVOLVED AND USE OUR ADVISORY 666 00:27:19,200 --> 00:27:20,400 CAPACITY AS BEST AS YOU CAN AND 667 00:27:20,400 --> 00:27:22,880 I THINK WITH THE NEXT 2 DAYS, 668 00:27:22,880 --> 00:27:24,000 THAT IS 1 OF THE THINGS THAT 669 00:27:24,000 --> 00:27:27,200 WE'RE GOING TO BE DOING IS 670 00:27:27,200 --> 00:27:29,560 WORKING OUT HOW WE CAN BEST USE 671 00:27:29,560 --> 00:27:32,600 OUR ROLE AS THE TAC TO BE ABLE 672 00:27:32,600 --> 00:27:35,000 TO HELP AND TO BE ABLE TO 673 00:27:35,000 --> 00:27:36,440 COMMUNICATE LIKE YOU TALKED 674 00:27:36,440 --> 00:27:37,240 ABOUT EARLIER. 675 00:27:37,240 --> 00:27:38,560 THERE'S A LOT HAPPENING AND WE 676 00:27:38,560 --> 00:27:41,360 ALSO WANT TO BE ABLE TO SHARE 677 00:27:41,360 --> 00:27:43,000 OUR INFORMATION WITH OUR 678 00:27:43,000 --> 00:27:44,920 COMMUNITIES, WITH OUR TRIBES, 679 00:27:44,920 --> 00:27:47,600 WITH EVERYONE WHO WE'RE WORKING 680 00:27:47,600 --> 00:27:49,720 WITH SO THAT THIS INFORMATION 681 00:27:49,720 --> 00:27:51,360 GETS OUT INCLUDING THE TRIBAL 682 00:27:51,360 --> 00:27:52,440 CONSULTATION, SO I APPRECIATE 683 00:27:52,440 --> 00:27:55,480 THAT YOU BROUGHT THAT UP WITH 684 00:27:55,480 --> 00:27:56,080 CONSULTATION BECAUSE IT'S VERY 685 00:27:56,080 --> 00:27:59,600 IMPORTANT TO ALL THE TRIBES 686 00:27:59,600 --> 00:28:06,200 WITHIN THE STATES AND WITHIN THE 687 00:28:06,200 --> 00:28:09,800 ALASKA REGION INDIAN COUNTRY. 688 00:28:09,800 --> 00:28:10,560 >>WELL, THANK YOU. 689 00:28:10,560 --> 00:28:13,000 YOU KNOW, WE HAVE LEARNED THAT 690 00:28:13,000 --> 00:28:15,120 THESE SESSIONS ARE BOTH 691 00:28:15,120 --> 00:28:22,240 ESSENTIAL BUT ALSO INVALUABLE 692 00:28:22,240 --> 00:28:24,160 BECAUSE THEY SERVE AS IMPORTANT 693 00:28:24,160 --> 00:28:25,680 GUIDES FOR US SO THAT WE MAKE 694 00:28:25,680 --> 00:28:27,760 SURE WE REMAIN IN ALIGNMENT. 695 00:28:27,760 --> 00:28:28,960 YOU ARE QUITE CORRECT. 696 00:28:28,960 --> 00:28:33,160 YOU KNOW NIH IS A LARGE 697 00:28:33,160 --> 00:28:33,840 ORGANIZATION AND ONLY THE 698 00:28:33,840 --> 00:28:34,880 CONGRESS OF THE UNITED STATES 699 00:28:34,880 --> 00:28:37,080 COULD DEVELOP SUCH AN 700 00:28:37,080 --> 00:28:37,400 ORGANIZATION. 701 00:28:37,400 --> 00:28:40,640 YOU KNOW WE'RE COMPLETELY 702 00:28:40,640 --> 00:28:44,680 DECENTRALIZED AND SO, SOMETIMES 703 00:28:44,680 --> 00:28:47,560 WE ARE NOT AS SYNCHRONIZED AS WE 704 00:28:47,560 --> 00:28:51,200 SHOULD BE AND THAT'S ON US. 705 00:28:51,200 --> 00:28:53,080 I MEAN, WE HAVE TO DO BETTER 706 00:28:53,080 --> 00:28:57,280 OBVIOUSLY, BUT I THINK WITH YOUR 707 00:28:57,280 --> 00:29:01,280 CONTINUED GUIDANCE AND INPUT, WE 708 00:29:01,280 --> 00:29:04,280 WILL CONTINUE TO IMPROVE HOW WE 709 00:29:04,280 --> 00:29:08,640 GO ABOUT THIS AND IN SO DOING, 710 00:29:08,640 --> 00:29:10,120 EVERYBODY WILL BENEFIT. 711 00:29:10,120 --> 00:29:12,920 SO WE CERTAINLY LOOK FORWARD TO 712 00:29:12,920 --> 00:29:14,640 CONTINUING TO WORK WITH THE 713 00:29:14,640 --> 00:29:16,680 TRIBAL ADVISORY COMMITTEE AS 714 00:29:16,680 --> 00:29:20,800 WELL AS THE INDIVIDUAL TRIBAL 715 00:29:20,800 --> 00:29:21,280 NATIONS OF COURSE. 716 00:29:21,280 --> 00:29:23,160 >>THANK YOU AND WE DO HAVE SOME 717 00:29:23,160 --> 00:29:29,840 QUESTIONS FROM OUR TAC 718 00:29:29,840 --> 00:29:30,120 MEMBERSHIP. 719 00:29:30,120 --> 00:29:37,480 I THINK DR. JOCK? 720 00:29:37,480 --> 00:29:39,920 >>THANKS FOR THIS INFO SESSION 721 00:29:39,920 --> 00:29:43,000 AND GIVING US--STARTING US OFF 722 00:29:43,000 --> 00:29:43,640 WITH THIS OVERVIEW. 723 00:29:43,640 --> 00:29:47,520 AND I WANT TO CONTINUE ON THIS 724 00:29:47,520 --> 00:29:50,360 LINE OF CONSULTATION AND I 725 00:29:50,360 --> 00:29:53,480 WANTED TO ASK, WHAT IS THE NIH 726 00:29:53,480 --> 00:29:55,080 DOING TO MAKE RESEARCH THAT IS 727 00:29:55,080 --> 00:29:59,760 FUNDED THROUGH THE NIH AND THE 728 00:29:59,760 --> 00:30:00,400 RESEARCHERS, THE RESEARCH TEAM, 729 00:30:00,400 --> 00:30:02,440 TEAMS THAT ARE FUNDED THROUGH 730 00:30:02,440 --> 00:30:03,640 THE NIH AWARE OF THE 731 00:30:03,640 --> 00:30:05,640 CONSULTATION REQUIREMENTS THAT 732 00:30:05,640 --> 00:30:09,560 ARE REALLY UNIQUE TO TRIBAL 733 00:30:09,560 --> 00:30:10,360 HEALTH RESEARCH. 734 00:30:10,360 --> 00:30:12,360 YEAH, SO WE APPROACH THIS IN 735 00:30:12,360 --> 00:30:14,280 MULTIPLE WAYS, PERHAPS THE MOST 736 00:30:14,280 --> 00:30:16,840 SIGNIFICANT IS THAT WE DISCUSS 737 00:30:16,840 --> 00:30:19,920 THIS AT OUR INSTITUTE AND CENTER 738 00:30:19,920 --> 00:30:20,680 DIRECTOR MEETINGS WHICH ARE 739 00:30:20,680 --> 00:30:24,280 ATTENDED BY THE INSTITUTES 740 00:30:24,280 --> 00:30:25,920 CENTER, DIRECTORS OF THE 27 741 00:30:25,920 --> 00:30:27,080 DIFFERENT ORGANIZATIONS THAT 742 00:30:27,080 --> 00:30:28,600 MAKE UP THE FEDERATED SYSTEM 743 00:30:28,600 --> 00:30:38,240 THAT WE KNOW IS NIH. 744 00:30:38,240 --> 00:30:39,800 AND SURPRISINGLY, DESPITE ALL OF 745 00:30:39,800 --> 00:30:41,320 THE EFFORTS, THIS COMES AS NEWS 746 00:30:41,320 --> 00:30:44,320 TO SOME OF OUR NEWER CENTER 747 00:30:44,320 --> 00:30:46,640 DIRECTORS, SO FORTUNATELY WE OUR 748 00:30:46,640 --> 00:30:47,600 TRIBAL HEALTH RESEARCH OFFICE 749 00:30:47,600 --> 00:30:50,120 HAS BEEN INSTRUMENTAL IN WORKING 750 00:30:50,120 --> 00:30:52,240 VERY CLOSELY WITH ALL OF OUR 751 00:30:52,240 --> 00:30:54,320 INSTITUTES AND CENTERS, BUT 752 00:30:54,320 --> 00:30:55,400 PARTICULARLY CARE TO THOSE WHO 753 00:30:55,400 --> 00:30:58,080 ARE NOW BEING LED BY NEWER 754 00:30:58,080 --> 00:31:03,080 MEMBERS OF OUR ORGANIZATION. 755 00:31:03,080 --> 00:31:04,440 WE'VE ALSO THROUGH THE TRIBAL 756 00:31:04,440 --> 00:31:08,480 HEALTH RESEARCH OFFICE WORK AT A 757 00:31:08,480 --> 00:31:10,440 STAFF LEVEL TO INSURE THAT THE 758 00:31:10,440 --> 00:31:12,440 PEOPLE WHO ARE IMPLEMENTING 759 00:31:12,440 --> 00:31:19,040 THINGS ON A DAY-TO-DAY BASIS ARE 760 00:31:19,040 --> 00:31:19,640 AWARE. 761 00:31:19,640 --> 00:31:23,360 AND OF COURSE, WE ALSO, NIH AS 762 00:31:23,360 --> 00:31:25,320 AN ORGANIZATION PARTICIPATES IN 763 00:31:25,320 --> 00:31:28,320 THE SECRETARY TRIBAL ADVISORY 764 00:31:28,320 --> 00:31:29,440 COUNCIL, MEETINGS AND PROCESS 765 00:31:29,440 --> 00:31:38,240 AND I'VE BEEN PRIVILEGED TO BE 766 00:31:38,240 --> 00:31:41,640 THE NIH LIAISON TO THIS TAC FOR 767 00:31:41,640 --> 00:31:43,360 MANY YEARS NOW SO I'M ABLE TO 768 00:31:43,360 --> 00:31:44,520 BRING BACK THAT INFORMATION AS 769 00:31:44,520 --> 00:31:47,600 WELL TO BOTH STAFF AND 770 00:31:47,600 --> 00:31:48,200 LEADERSHIP. 771 00:31:48,200 --> 00:31:50,280 BUT YOU KNOW DR. WILSON YOU MAY 772 00:31:50,280 --> 00:31:52,040 HAVE ADDITIONAL THINGS YOU MAY 773 00:31:52,040 --> 00:31:53,560 WANT TO POINT TO BEYOND WHAT I 774 00:31:53,560 --> 00:31:54,360 HAVE OUTLINED. 775 00:31:54,360 --> 00:31:56,000 >>YEAH, THANK YOU DR. TABAK. 776 00:31:56,000 --> 00:31:58,280 AND WE DO THIS, YOU COVERED IT 777 00:31:58,280 --> 00:31:59,200 VERY WELL. 778 00:31:59,200 --> 00:32:04,640 WE PARTICIPATE IN AS MANY 779 00:32:04,640 --> 00:32:06,600 COMMITTEES AND COORDINATING ROLE 780 00:32:06,600 --> 00:32:06,960 AS POSSIBLE. 781 00:32:06,960 --> 00:32:08,800 AND THIS IS IN THE DEVELOPMENT 782 00:32:08,800 --> 00:32:12,040 OF DIFFERENT NEW INITIATIVES AND 783 00:32:12,040 --> 00:32:13,560 WE HAVE LOTS OF INFORMATIONAL 784 00:32:13,560 --> 00:32:15,000 MEETINGS WITH VARIOUS PROGRAM 785 00:32:15,000 --> 00:32:17,040 COMMITTEES, ACROSS THE NIH, SO 786 00:32:17,040 --> 00:32:18,680 IT'S AN ONGOING PROCESS, AND 787 00:32:18,680 --> 00:32:20,520 IT'S SOMETHING THAT WE HAVE TO 788 00:32:20,520 --> 00:32:22,640 CONTINUE TO DO TO CONTINUE TO 789 00:32:22,640 --> 00:32:23,720 EDUCATE, YOU KNOW THOSE WHO ARE 790 00:32:23,720 --> 00:32:27,000 NEW TO THE NIH, AND THOSE WHO 791 00:32:27,000 --> 00:32:28,640 HAVEN'T HAD THE OPPORTUNITY TO 792 00:32:28,640 --> 00:32:29,920 ENGAGE WITH TRIBAL COMMUNITIES 793 00:32:29,920 --> 00:32:30,880 AS OF YET. 794 00:32:30,880 --> 00:32:31,600 SO THERE'S GROWING INTEREST AND 795 00:32:31,600 --> 00:32:34,480 YOU WILL HEAR MORE ABOUT THIS IN 796 00:32:34,480 --> 00:32:35,400 OUR PRESENTATIONS TOMORROW ABOUT 797 00:32:35,400 --> 00:32:37,720 WANTING TO SUPPORT TRIBAL HEALTH 798 00:32:37,720 --> 00:32:37,960 RESEARCH. 799 00:32:37,960 --> 00:32:39,880 OUR GOAL IS TO MAKE SURE IT'S 800 00:32:39,880 --> 00:32:42,200 ALL DONE PROPERTILY AND 801 00:32:42,200 --> 00:32:43,800 ETHICALLY AND WITH CONSULTATION 802 00:32:43,800 --> 00:32:45,080 AS THE BACK DROP OF EVERYTHING 803 00:32:45,080 --> 00:32:46,960 THAT WE DO MOVING FORWARD. 804 00:32:46,960 --> 00:32:49,240 THANKS. 805 00:32:49,240 --> 00:32:57,240 >>THANK YOU, DAVE. 806 00:32:57,240 --> 00:32:58,240 >>SORRY ABOUT THAT, DR. JOCK, 807 00:32:58,240 --> 00:33:00,880 DID YOU HAVE ANY FOLLOW UP TO 808 00:33:00,880 --> 00:33:01,080 THAT? 809 00:33:01,080 --> 00:33:04,000 DID 810 00:33:04,000 --> 00:33:04,280 --THANKS. 811 00:33:04,280 --> 00:33:09,800 ONE OF THE ISSUES CAN BE THAT 812 00:33:09,800 --> 00:33:11,200 WHEN RESEARCH IS SUBMITTED, THE 813 00:33:11,200 --> 00:33:13,040 INITIAL GRANT IS SUBMITTED THAT 814 00:33:13,040 --> 00:33:14,640 THERE ISN'T AS MUCH 815 00:33:14,640 --> 00:33:16,960 UNDERSTANDING EVEN AT THE GRANT 816 00:33:16,960 --> 00:33:18,440 IN THE INITIAL SUBMISSION STAGE, 817 00:33:18,440 --> 00:33:19,800 SO I WAS WONDERING IF YOU COULD 818 00:33:19,800 --> 00:33:21,840 TALK MORE ABOUT WHAT IS DONE AT 819 00:33:21,840 --> 00:33:23,920 THAT STAGE TO TRY TO PREVENT 820 00:33:23,920 --> 00:33:27,320 THIS LACK OF CONSULTATION WHICH 821 00:33:27,320 --> 00:33:30,160 CREATES MANY PROBLEMS AND IS 822 00:33:30,160 --> 00:33:31,800 ETHICAL CONCERN FOR TRIBAL 823 00:33:31,800 --> 00:33:36,760 COMMUNITIES TO NOT BE CONSULTED. 824 00:33:36,760 --> 00:33:38,040 I WAS WONDERING IF YOU COULD 825 00:33:38,040 --> 00:33:39,680 SPEAK MORE TO WHAT IS DONE AT 826 00:33:39,680 --> 00:33:40,280 THAT STAGE. 827 00:33:40,280 --> 00:33:41,960 >>YEAH, SO THIS IS STILL A WORK 828 00:33:41,960 --> 00:33:42,960 IN PROGRESS. 829 00:33:42,960 --> 00:33:49,040 I HAVE TO--YOU KNOW ADMIT THAT. 830 00:33:49,040 --> 00:33:50,360 WE DO DISCUSS THIS WITH THE 831 00:33:50,360 --> 00:33:51,520 FOLKS WHO ARE RESPONSIBLE FOR 832 00:33:51,520 --> 00:33:57,480 RUNNING THE CENTER FOR 833 00:33:57,480 --> 00:33:59,120 SCIENTIFIC REVIEW, CSR, WHICH 834 00:33:59,120 --> 00:34:01,080 REVIEWS ABOUT 70% OF ALL OUR 835 00:34:01,080 --> 00:34:01,440 APPLICATIONS. 836 00:34:01,440 --> 00:34:04,680 BUT AS YOU LIKELY KNOW, THE 837 00:34:04,680 --> 00:34:06,680 REMAINING 30% ARE REVIEWED BY 838 00:34:06,680 --> 00:34:11,640 THE INDIVIDUAL INSTITUTES AND 839 00:34:11,640 --> 00:34:15,520 CENTERS AND UNFORTUNATELY THERE 840 00:34:15,520 --> 00:34:18,080 IS SOMEONE--SOME HETEROGENERATED 841 00:34:18,080 --> 00:34:22,480 AITY IN THEIR UNDERSTANDING. 842 00:34:22,480 --> 00:34:24,600 BECAUSE FRANKLY WE SHOULD BE 843 00:34:24,600 --> 00:34:27,440 CATCHING AT THE VARIOUS EARLY 844 00:34:27,440 --> 00:34:29,440 INCEPTION, WHEN WE FIRST LOOK AT 845 00:34:29,440 --> 00:34:30,280 THE GRANT APPLICATION, YOU KNOW 846 00:34:30,280 --> 00:34:32,160 SORT OF LIKE AS A CHECK LIST, 847 00:34:32,160 --> 00:34:36,480 YOU KNOW IS THERE EVIDENCE OF 848 00:34:36,480 --> 00:34:38,200 BONA FIDE TRIBAL CONSULTATION OR 849 00:34:38,200 --> 00:34:38,360 NOT? 850 00:34:38,360 --> 00:34:40,360 AND THIS IS SOMETHING THAT WE 851 00:34:40,360 --> 00:34:43,120 NEED TO YOU KNOW CONTINUE TO 852 00:34:43,120 --> 00:34:46,320 WORK TOWARDS THAT FINAL GOAL. 853 00:34:46,320 --> 00:34:48,960 AGAIN, I THINK FOR OUR CENTER 854 00:34:48,960 --> 00:34:49,920 FOR SCIENTIFIC REVIEW, WHERE WE 855 00:34:49,920 --> 00:34:52,040 HAVE, YOU KNOW SORT OF A 856 00:34:52,040 --> 00:34:54,360 CONSOLIDATED APPROACH, WE DO A 857 00:34:54,360 --> 00:34:58,000 BETTER JOB BUT THE INDIVIDUAL 858 00:34:58,000 --> 00:35:01,000 INSTITUTES AND CENTERS, THERE IS 859 00:35:01,000 --> 00:35:01,840 SOME UNEVENNESS. 860 00:35:01,840 --> 00:35:04,240 AGAIN, IF I MAY ASK DR. WILSON, 861 00:35:04,240 --> 00:35:05,600 IF THERE ARE ANY APPROACHES THAT 862 00:35:05,600 --> 00:35:11,280 WE WOULD LIKE TO ADD TO WHAT 863 00:35:11,280 --> 00:35:13,000 I'VE OUTLINED? 864 00:35:13,000 --> 00:35:14,840 NYES, THANK YOU DR. TABAK. 865 00:35:14,840 --> 00:35:16,800 SO WE ARE DEVELOPING A SERIES OF 866 00:35:16,800 --> 00:35:19,000 RESOURCES THAT WE'RE HOPING 867 00:35:19,000 --> 00:35:19,840 ACADEMIC INSTITUTIONS WILL REPLY 868 00:35:19,840 --> 00:35:21,960 HEAVILY ON IN TERMS OF USING 869 00:35:21,960 --> 00:35:26,160 THOSE DOCUMENTS FOR EDUCATING 870 00:35:26,160 --> 00:35:26,600 THEIR INVESTIGATORS. 871 00:35:26,600 --> 00:35:28,760 THAT'S 1 OF THE CHALLENGES THAT 872 00:35:28,760 --> 00:35:30,680 IS THAT WE DON'T HAVE OVERSIGHT 873 00:35:30,680 --> 00:35:32,120 OVER THE INSTITUTION SO I SHOULD 874 00:35:32,120 --> 00:35:33,880 SAY AS MUCH OVERSIGHT AS WE 875 00:35:33,880 --> 00:35:35,880 WOULD LIKE IN TERMS OF HOW 876 00:35:35,880 --> 00:35:37,040 INVESTIGATORS, ENGAGE WITH 877 00:35:37,040 --> 00:35:38,400 TRIBAL COMMUNITIES, SO WE WANT 878 00:35:38,400 --> 00:35:39,440 TO USE THESE DOCUMENTS AS 879 00:35:39,440 --> 00:35:42,160 RESOURCES SO THAT THE 880 00:35:42,160 --> 00:35:43,240 INSTITUTIONS CAN EDUCATE THEIR 881 00:35:43,240 --> 00:35:44,160 INVESTIGATORS ON THE APPROPRIATE 882 00:35:44,160 --> 00:35:46,400 COURSES OF ACTION IN TERMS OF 883 00:35:46,400 --> 00:35:49,800 MEETING WITH TRIBES EARLY ON TO 884 00:35:49,800 --> 00:35:51,160 WORK THROUGH INTELLECTUAL 885 00:35:51,160 --> 00:35:52,000 PROPERTY AGREEMENTS THAT MIGHT 886 00:35:52,000 --> 00:35:54,320 COME ABOUT AS A RESULT OF THE 887 00:35:54,320 --> 00:35:55,640 RESEARCH THAT'S BEING CONDUCTED 888 00:35:55,640 --> 00:35:56,960 OR SUPPORTED BUT ALSO IN TERMS 889 00:35:56,960 --> 00:36:01,040 OF DATA SHARING AND DATA 890 00:36:01,040 --> 00:36:01,680 MANAGEMENT AGREEMENTS, THERE'S 891 00:36:01,680 --> 00:36:04,200 ALSO MAKING SURE THAT THE--THE 892 00:36:04,200 --> 00:36:05,400 RESEARCHERS GO THROUGH THE 893 00:36:05,400 --> 00:36:08,640 APPROPRIATE CHANNELS IN TERMS OF 894 00:36:08,640 --> 00:36:11,320 TRIBAL IRBs APPROVALS AND 895 00:36:11,320 --> 00:36:13,800 REVIEWS, YEARLY MEETINGS WITH 896 00:36:13,800 --> 00:36:14,920 IRBs AND UPDATES. 897 00:36:14,920 --> 00:36:16,880 WHATEVER THE AGREEMENTS OR 898 00:36:16,880 --> 00:36:17,720 STIPULATIONS FOR ARE THE TRIBES 899 00:36:17,720 --> 00:36:19,360 WE WANT THOSE TO BE RECOGNIZED 900 00:36:19,360 --> 00:36:21,280 SO WE HAVE THE BEST PRACTICES 901 00:36:21,280 --> 00:36:22,320 DOCUMENT THAT'S BEEN OUT, I 902 00:36:22,320 --> 00:36:23,280 THINK THAT I'VE MENTIONED THAT 903 00:36:23,280 --> 00:36:27,760 WE ARE IN THE FINAL STAGES AND 904 00:36:27,760 --> 00:36:28,800 IT'S--INTERNAL REVIEW, ABOUT 905 00:36:28,800 --> 00:36:32,680 BEST PRACTICES OF HOW DO WE 906 00:36:32,680 --> 00:36:34,480 INCLUDE URBAN INDIAN POPULATIONS 907 00:36:34,480 --> 00:36:35,000 IN BIOMEDICAL RESEARCH. 908 00:36:35,000 --> 00:36:36,360 THAT'S GOING TO BE A REALLY 909 00:36:36,360 --> 00:36:37,520 IMPORTANT DOCUMENT AS WELL 910 00:36:37,520 --> 00:36:38,600 BECAUSE THAT COVERS A LOT OF 911 00:36:38,600 --> 00:36:40,000 THINGS THAT HAVE BEEN MENTIONED 912 00:36:40,000 --> 00:36:41,400 HERE THAT AREN'T SO CLEARLY 913 00:36:41,400 --> 00:36:43,040 DEFINED WHEN WE WORK WITH TRIBAL 914 00:36:43,040 --> 00:36:45,160 COMMUNITIES THAT HAVE LAND BASED 915 00:36:45,160 --> 00:36:46,040 JURISDICTIONS SO WE'RE ARE 916 00:36:46,040 --> 00:36:46,960 DEVELOPING AND CONTINUING TO 917 00:36:46,960 --> 00:36:49,280 DEVELOP RESOURCES AND WE LOOK 918 00:36:49,280 --> 00:36:50,680 FORWARD TO PARTNERING WITH THE 919 00:36:50,680 --> 00:36:52,120 TAC IF THERE ARE ADDITIONAL 920 00:36:52,120 --> 00:36:53,080 RESOURCES THAT WE SHOULD BE 921 00:36:53,080 --> 00:36:56,360 THINKING ABOUT THAT WOULD HELP 922 00:36:56,360 --> 00:36:59,600 PRESERVE OR RECOGNIZE TRIBAL 923 00:36:59,600 --> 00:37:00,440 SOVEREIGNTY IN BIOMEDICAL 924 00:37:00,440 --> 00:37:00,720 RESEARCH. 925 00:37:00,720 --> 00:37:03,560 >>IF I MAY ADD 1 ADDITIONAL 926 00:37:03,560 --> 00:37:04,280 THING. 927 00:37:04,280 --> 00:37:06,480 THANK YOU, DAVE, A VERY GOOD 928 00:37:06,480 --> 00:37:07,160 REVIEW. 929 00:37:07,160 --> 00:37:08,400 ONE ADDITIONAL THING, 930 00:37:08,400 --> 00:37:10,960 PERIODICALLY WE ASK THAT TRIBAL 931 00:37:10,960 --> 00:37:14,040 ADVISORY COMMITTEE FOR THEIR 932 00:37:14,040 --> 00:37:17,600 NOMINEES FOR REVIEW PANELS, AND 933 00:37:17,600 --> 00:37:20,440 FORTUNATELY, I MEAN THE GOOD 934 00:37:20,440 --> 00:37:22,280 NEWS IS, THE SCIENTIFIC 935 00:37:22,280 --> 00:37:24,320 WORKFORCE IN INDIAN COUNTRY HAS 936 00:37:24,320 --> 00:37:25,720 CONTINUED TO GROW AND SO IT'S 937 00:37:25,720 --> 00:37:29,120 VERY PORL THAT THERE ARE NOW 938 00:37:29,120 --> 00:37:31,200 ADDITIONAL PERSONS WITHIN YOUR 939 00:37:31,200 --> 00:37:34,000 COMMUNITIES THAT WOULD BE 940 00:37:34,000 --> 00:37:37,960 INTERESTED IN SOME FORM OF 941 00:37:37,960 --> 00:37:39,040 REVIEW SERVICE AND SO IF YOU 942 00:37:39,040 --> 00:37:43,880 COULD LET US KNOW WHO THOSE 943 00:37:43,880 --> 00:37:44,920 INDIVIDUALS ARE BECAUSE THAT 944 00:37:44,920 --> 00:37:46,240 WOULD BE ANOTHER IMPORTANT 945 00:37:46,240 --> 00:37:48,320 APPROACH, IS IF WE HAVE 946 00:37:48,320 --> 00:37:52,160 INDIVIDUALS WHO ARE CULTURALLY 947 00:37:52,160 --> 00:37:56,240 AWARE AND SENSITIVE ON REVIEW 948 00:37:56,240 --> 00:37:57,040 PANELS. 949 00:37:57,040 --> 00:37:57,840 THEY COULD RAISE THEIR HAND AND 950 00:37:57,840 --> 00:38:00,480 SAY WAIT A MINUTE, THIS HAS NOT 951 00:38:00,480 --> 00:38:03,720 BEEN CONSIDERED APPROPRIATELY 952 00:38:03,720 --> 00:38:04,320 AND SO FORTH. 953 00:38:04,320 --> 00:38:05,600 SO IF WE COULD ADD THAT IN 954 00:38:05,600 --> 00:38:06,960 ADDITION TO THE THINGS THAT 955 00:38:06,960 --> 00:38:11,160 WE'RE DOING AT OUR END, THAT 956 00:38:11,160 --> 00:38:12,280 WOULD BE GREAT. 957 00:38:12,280 --> 00:38:13,160 THANK YOU. 958 00:38:13,160 --> 00:38:13,640 >>THANK YOU. 959 00:38:13,640 --> 00:38:17,680 WE HAVE ANOTHER QUESTION FROM 960 00:38:17,680 --> 00:38:20,280 OUR DELEGATE MR. SAUNKEAH. 961 00:38:20,280 --> 00:38:25,600 DID I SAY IT RIGHT. 962 00:38:25,600 --> 00:38:28,360 >>YOU WERE CLOSE. 963 00:38:28,360 --> 00:38:29,120 SAUNKEAH. 964 00:38:29,120 --> 00:38:30,200 >>THANK YOU COUNCIL WOMAN, 965 00:38:30,200 --> 00:38:32,960 APPRECIATE IT. 966 00:38:32,960 --> 00:38:34,560 DR. TABAK, THANK YOU FOR JOINING 967 00:38:34,560 --> 00:38:35,720 US AGAIN, APPRECIATE YOUR TIME. 968 00:38:35,720 --> 00:38:36,760 IN YOUR OPENING REMARKS YOU 969 00:38:36,760 --> 00:38:39,080 TALKED ABOUT HOW THE BIG DATA 970 00:38:39,080 --> 00:38:40,360 PROGRAMS ARE EXPANDING AND I 971 00:38:40,360 --> 00:38:43,760 THINK WE'RE CLEARLY ON THIS 972 00:38:43,760 --> 00:38:45,080 COMMITTEE AWARE OF THAT AND THE 973 00:38:45,080 --> 00:38:46,280 FACT THAT IT SEEMED TO ME AT 974 00:38:46,280 --> 00:38:50,600 LEAST TO BE ACCELERATING MORE 975 00:38:50,600 --> 00:38:53,240 QUICKLY THAN, YOU KNOW THE 976 00:38:53,240 --> 00:38:53,920 TRIBAL DATA SOVEREIGNTYY EFFORTS 977 00:38:53,920 --> 00:38:56,440 CAN KEEP UP WITH, RIGHT? 978 00:38:56,440 --> 00:38:57,600 BECAUSE EVERY MEETING IT SEEMS 979 00:38:57,600 --> 00:38:59,080 LIKE WE'RE INTRODUCED TO A NEW 980 00:38:59,080 --> 00:39:02,280 PROGRAM OF SOME SORT, A NEW 981 00:39:02,280 --> 00:39:04,080 REPOSITORY AND IT'S HARD TO KEEP 982 00:39:04,080 --> 00:39:05,520 UP WITH AND THEN YOU ALSO 983 00:39:05,520 --> 00:39:07,680 MENTIONED IN YOUR REMARKS ABOUT 984 00:39:07,680 --> 00:39:10,840 DATA HUBS, YOU KNOW THAT PEOPLE 985 00:39:10,840 --> 00:39:12,360 WERE ESTABLISHING DATA HUBS 986 00:39:12,360 --> 00:39:13,920 WHICH TO ME IS EVEN 987 00:39:13,920 --> 00:39:15,200 DECENTRALIZING AND MAKING IT 988 00:39:15,200 --> 00:39:18,960 MORE DIFFICULT RIGHT, FOR US TO 989 00:39:18,960 --> 00:39:20,320 MONITOR TRIBAL DATA SOVEREIGNTYY 990 00:39:20,320 --> 00:39:23,560 ISSUES AND SO, YOU REFERENCED A 991 00:39:23,560 --> 00:39:24,480 GUIDANCE DOCUMENTS, BEST 992 00:39:24,480 --> 00:39:25,880 PRACTICE GUIDANCE DOCUMENTS THAT 993 00:39:25,880 --> 00:39:29,480 WILL BE COMING OUT IN HOPEFULLY 994 00:39:29,480 --> 00:39:29,680 2024. 995 00:39:29,680 --> 00:39:31,440 COULD YOU ELABORATE MORE ON THAT 996 00:39:31,440 --> 00:39:33,760 AND LET US KNOW WHAT TYPE OF 997 00:39:33,760 --> 00:39:36,920 INPUT THE TAC WILL HAVE OR WHAT 998 00:39:36,920 --> 00:39:39,080 OPPORTUNITIES THERE WILL BE FOR 999 00:39:39,080 --> 00:39:41,600 TRIBES TO BE INVOLVED IN THAT 1000 00:39:41,600 --> 00:39:44,320 PROCESS. 1001 00:39:44,320 --> 00:39:45,120 >>NO, THANK YOU. 1002 00:39:45,120 --> 00:39:46,840 SO THE DOCUMENT WILL SPEAK TO 1003 00:39:46,840 --> 00:39:51,400 THE VARIOUS THINGS THAT YOU JUST 1004 00:39:51,400 --> 00:39:51,760 OUTLINED. 1005 00:39:51,760 --> 00:39:53,720 THE PROLIFERATION OF THE USE OF 1006 00:39:53,720 --> 00:39:55,560 BIG DATA AND YOU'RE RIGHT, I 1007 00:39:55,560 --> 00:39:57,160 MEAN YOUR OBSERVATION AND 1008 00:39:57,160 --> 00:39:58,880 COMPLETELY CORRECT. 1009 00:39:58,880 --> 00:40:00,600 IT'S JUST ACCELERATING AND IT'S 1010 00:40:00,600 --> 00:40:10,680 REALLY HARD TO KEEP UP WITH 1011 00:40:10,680 --> 00:40:13,280 EVERYTHING AND SO WE WOULD 1012 00:40:13,280 --> 00:40:15,040 ENVISION HAVING THE TRIBAL 1013 00:40:15,040 --> 00:40:16,200 GUIDANCE COMMITTEE THAT PROVIDES 1014 00:40:16,200 --> 00:40:18,960 GUIDANCE TO US AS WE FORMULATE 1015 00:40:18,960 --> 00:40:23,920 THIS AS WELL AS INDIVIDUAL 1016 00:40:23,920 --> 00:40:25,320 TRIBAL CONSULTATIONS. 1017 00:40:25,320 --> 00:40:30,000 YOU KNOW WE'RE AIMING FOR 24 BUT 1018 00:40:30,000 --> 00:40:31,960 IN BETWEEN THERE'S A LOT THAT'S 1019 00:40:31,960 --> 00:40:33,560 GOING TO BE GOING ON. 1020 00:40:33,560 --> 00:40:36,280 SO WE'RE IN EFFECT TRYING TO DO 1021 00:40:36,280 --> 00:40:40,840 THIS IN REALTIME IF YOU WILL, 1022 00:40:40,840 --> 00:40:41,640 IT'S CRITICALLY IMPORTANT 1023 00:40:41,640 --> 00:40:44,480 BECAUSE AND AGAIN, I DON'T MEAN 1024 00:40:44,480 --> 00:40:46,040 TO SOUND LIKE I'M LECTURING 1025 00:40:46,040 --> 00:40:48,200 BECAUSE YOU ALL KNOW THIS, ON 1026 00:40:48,200 --> 00:40:52,760 THE 1 HAND, WE VERY MUCH WANT 1027 00:40:52,760 --> 00:40:53,480 PARTICIPATION FROM AMERICAN 1028 00:40:53,480 --> 00:40:55,000 INDIAN AND ALASKA NATIVES 1029 00:40:55,000 --> 00:40:58,400 BECAUSE WE THINK THIS IS A WAY 1030 00:40:58,400 --> 00:40:58,840 OF IMPROVING HEALTH. 1031 00:40:58,840 --> 00:41:01,320 BUT ON THE OTHER HAND, WE DON'T 1032 00:41:01,320 --> 00:41:05,280 WANT TO COMPROMISE THE INTEGRITY 1033 00:41:05,280 --> 00:41:07,400 OF THE SOVEREIGNTY OF THE 1034 00:41:07,400 --> 00:41:08,080 INDIVIDUAL TRIBAL NATIONS. 1035 00:41:08,080 --> 00:41:11,840 SO WE HAVE TO FIND THAT RIGHT 1036 00:41:11,840 --> 00:41:13,840 BALANCE AND FRANKLY, YOU KNOW 1037 00:41:13,840 --> 00:41:17,480 THE TRIBAL ADVISORY COMMITTEE IS 1038 00:41:17,480 --> 00:41:20,720 1 OF OUR BEST HOPES OF 1039 00:41:20,720 --> 00:41:22,080 NAVIGATING THIS. 1040 00:41:22,080 --> 00:41:23,160 AGAIN, DAVE, IF THERE ARE MORE 1041 00:41:23,160 --> 00:41:24,120 SPECIFIC THINGS THAT YOU WOULD 1042 00:41:24,120 --> 00:41:25,720 LIKE TO DRAW TO THE ATTENTION OF 1043 00:41:25,720 --> 00:41:29,360 THE TAC AT THIS POINT IN TIME, 1044 00:41:29,360 --> 00:41:30,360 PLEASE DO SO. 1045 00:41:30,360 --> 00:41:31,600 >>WELL, I WOULD JUST LIKE TO 1046 00:41:31,600 --> 00:41:32,960 BRIEFLY SAY THAT THE 1047 00:41:32,960 --> 00:41:35,640 RECOMMENDATIONS WILL BE 1048 00:41:35,640 --> 00:41:37,720 DEVELOPED BY LEADERS BY 1049 00:41:37,720 --> 00:41:39,000 INSTITUTE DIRECTORS ACROSS THE 1050 00:41:39,000 --> 00:41:41,400 AGENCY, SO, THEY HAVE A VERY 1051 00:41:41,400 --> 00:41:43,880 GOOD VIEW OF HOW MANY OF THESE 1052 00:41:43,880 --> 00:41:45,120 BIG DATA REPOSITORIES ARE 1053 00:41:45,120 --> 00:41:46,240 DESIGNED AND THEY WILL DO THEM 1054 00:41:46,240 --> 00:41:48,040 IN A VERY GENERAL WAY SO THAT 1055 00:41:48,040 --> 00:41:50,520 THE TAC CAN HELP US IDENTIFY 1056 00:41:50,520 --> 00:41:51,280 WHERE OTHER CRITICAL POINTS WERE 1057 00:41:51,280 --> 00:41:53,840 THAT WE NEED TO BE FOCUSING ON 1058 00:41:53,840 --> 00:41:57,320 TO MAINTAIN DATA INTEGRITY, DATA 1059 00:41:57,320 --> 00:41:58,960 SECURITY, TO MAKE SURE THAT THE 1060 00:41:58,960 --> 00:41:59,920 TRIBES ACTUALLY HAVE ACCESS TO 1061 00:41:59,920 --> 00:42:03,920 THE DATA AND SO THEY HAVE MOST 1062 00:42:03,920 --> 00:42:05,120 BENEFIT FROM THE DATA IN THESE, 1063 00:42:05,120 --> 00:42:06,760 IN THE LARGE GROWING DATA 1064 00:42:06,760 --> 00:42:07,720 RESEARCH PROGRAMS. 1065 00:42:07,720 --> 00:42:09,920 BUT IT'S REALLY EXCITING AND 1066 00:42:09,920 --> 00:42:11,280 WE'RE LOOKING FORWARD. 1067 00:42:11,280 --> 00:42:12,800 IT HASN'T INITIALLY KICKED OFF 1068 00:42:12,800 --> 00:42:15,880 YET. THIS IS JUST SOMETHING 1069 00:42:15,880 --> 00:42:17,480 THAT'S BEGUN, WE'VE IDENTIFIED 1070 00:42:17,480 --> 00:42:18,360 THE ISSUE AND PROBLEM AND WE 1071 00:42:18,360 --> 00:42:19,560 WANT TO MAKE SURE TO RAISE THIS 1072 00:42:19,560 --> 00:42:20,520 TO YOUR ATTENTION TO KNOW THAT 1073 00:42:20,520 --> 00:42:25,520 THIS IS GOING TO BE ON THE WAY 1074 00:42:25,520 --> 00:42:25,880 SOON. 1075 00:42:25,880 --> 00:42:27,480 >>THANK YOU, DAVID. 1076 00:42:27,480 --> 00:42:34,320 THIS IS REALLY IMPORTANT BECAUSE 1077 00:42:34,320 --> 00:42:36,320 DATA SCIENCE HAS ALREADY BECOME 1078 00:42:36,320 --> 00:42:37,560 CENTRAL TO BIOMEDICAL RESEARCH 1079 00:42:37,560 --> 00:42:40,320 AND IT'S GOING TO BECOME EVEN 1080 00:42:40,320 --> 00:42:47,080 MORE SO INTO THE FUTURE AND I 1081 00:42:47,080 --> 00:42:51,040 THINK THIS IS A GROWTH AREA FOR 1082 00:42:51,040 --> 00:42:53,080 SCIENCE AND BIOMEDICAL RESEARCH 1083 00:42:53,080 --> 00:42:56,080 AND ELGT THAT YOU WANT TO GET 1084 00:42:56,080 --> 00:42:57,480 TRIBAL NATIONS TO THE EXTENT 1085 00:42:57,480 --> 00:42:59,680 POSSIBLE IN ON THIS SORT OF 1086 00:42:59,680 --> 00:43:00,600 GROUND FLOOR SO THAT THEY'RE 1087 00:43:00,600 --> 00:43:02,600 ABLE TO GROW WITH US BOTH IN 1088 00:43:02,600 --> 00:43:05,120 TERMS OF WORKFORCE AND 1089 00:43:05,120 --> 00:43:06,960 IMPLEMENTATION AND SO FORTH. 1090 00:43:06,960 --> 00:43:10,120 SO I'M VERY, YOU KNOW, EXCITED 1091 00:43:10,120 --> 00:43:11,560 BY THE VARIOUS INITIATIVES THAT 1092 00:43:11,560 --> 00:43:12,560 WE'VE ALREADY LAUNCHED AND 1093 00:43:12,560 --> 00:43:13,920 OBVIOUSLY LOOK FORWARD TO 1094 00:43:13,920 --> 00:43:24,400 WORKING WITH EVERYBODY GOING 1095 00:43:25,840 --> 00:43:26,400 FORWARD ON THIS. 1096 00:43:26,400 --> 00:43:26,760 >>THANK YOU. 1097 00:43:26,760 --> 00:43:28,440 I KNOW WE HAVE A FOLLOW UP 1098 00:43:28,440 --> 00:43:29,960 QUESTION FROM DR. JOCK RELATED 1099 00:43:29,960 --> 00:43:33,600 TO THIS SO DR. JOCK AND THEN I 1100 00:43:33,600 --> 00:43:35,440 BELIEVE DR. DILLARD HAS ANOTHER 1101 00:43:35,440 --> 00:43:36,000 QUESTION. 1102 00:43:36,000 --> 00:43:39,440 SO DR. JOCK? 1103 00:43:39,440 --> 00:43:40,200 DID EMPLOY. 1104 00:43:40,200 --> 00:43:43,680 >>THANKS AND JUST A REAL QUICK 1105 00:43:43,680 --> 00:43:45,360 QUESTION ABOUT YOUR--IF YOU 1106 00:43:45,360 --> 00:43:49,200 COULD EXPAND ON THE NIH'S POLICY 1107 00:43:49,200 --> 00:43:51,040 AND YOUR PERSPECTIVE ON THE ROLE 1108 00:43:51,040 --> 00:43:53,240 OF TRIBAL IRBs IN REVIEWING 1109 00:43:53,240 --> 00:43:55,440 RESEARCH AND SUPPORTING ETHICAL 1110 00:43:55,440 --> 00:43:59,720 AND RIGOROUS RESEARCH IN INDIAN 1111 00:43:59,720 --> 00:44:00,240 COUNTRY. 1112 00:44:00,240 --> 00:44:02,800 >>THE IRBs ARE ESSENTIAL. 1113 00:44:02,800 --> 00:44:10,600 WE WORK THROUGH THE IRBs. 1114 00:44:10,600 --> 00:44:12,920 YOU KNOW WE HAVE IN SOME 1115 00:44:12,920 --> 00:44:15,640 INSTANCES BEEN CULTURE CONFIRMED 1116 00:44:15,640 --> 00:44:17,480 ASSESSESFUL IN REACHING WHAT WE 1117 00:44:17,480 --> 00:44:23,360 THINK ARE MUTUALLY BENEFICIAL 1118 00:44:23,360 --> 00:44:26,800 APPROACHES TO DATA RELEASE. 1119 00:44:26,800 --> 00:44:29,440 IN OTHER INITANCES, WE'VE 1120 00:44:29,440 --> 00:44:31,360 CREATED I GUESS THE TERMINOLOGY 1121 00:44:31,360 --> 00:44:33,680 WOULD BE AN ENCLAVE TO ALLOW THE 1122 00:44:33,680 --> 00:44:37,680 DATA TO BE COMPUTED UPON ONLY BY 1123 00:44:37,680 --> 00:44:45,000 INDIVIDUALS THAT THE TRIBAL 1124 00:44:45,000 --> 00:44:48,160 NATION IS COMFORTABLE WITH DOING 1125 00:44:48,160 --> 00:44:50,960 THIS AND I THINK ALL DIFFERENT 1126 00:44:50,960 --> 00:44:55,680 TYPES OF MODELS WILL ULTIMATELY 1127 00:44:55,680 --> 00:45:00,400 BE REQUIRED BUT AGAIN, YOU KNOW 1128 00:45:00,400 --> 00:45:03,520 THE IRB HAS TO PLAY A ROLE 1129 00:45:03,520 --> 00:45:08,240 BECAUSE PRESUMABLY THAT'S WHERE 1130 00:45:08,240 --> 00:45:12,880 THE EXPERTISE IS FOR THE TRIBAL 1131 00:45:12,880 --> 00:45:13,320 NATION. 1132 00:45:13,320 --> 00:45:16,360 BUT IT DOES SOMETIMES TAKE 1133 00:45:16,360 --> 00:45:18,720 CONVERSATION AND DISCUSSION TO 1134 00:45:18,720 --> 00:45:20,360 MEET, YOU KNOW THE RIGHT 1135 00:45:20,360 --> 00:45:22,000 BALANCE, I SEE YOU'VE TURNED 1136 00:45:22,000 --> 00:45:25,240 YOUR CAMERA ON, SO, DR. WILSON, 1137 00:45:25,240 --> 00:45:29,360 PLEASE GO AHEAD. 1138 00:45:29,360 --> 00:45:31,520 >>THANK YOU DR. TABAK, WILL BE 1139 00:45:31,520 --> 00:45:33,000 HEARING MORE ABOUT THIS IN A 1140 00:45:33,000 --> 00:45:33,920 PRESENTATION BY THE OFFICE OF 1141 00:45:33,920 --> 00:45:35,920 SCIENCE POLICY BUT I WANTED TO 1142 00:45:35,920 --> 00:45:38,000 GIVE OUR BIOETHICIST A CHANCE TO 1143 00:45:38,000 --> 00:45:41,400 RESPOND AND SHE CAN SHARE HER 1144 00:45:41,400 --> 00:45:42,600 COMMENTS, THANKS. 1145 00:45:42,600 --> 00:45:43,000 >>THANK YOU. 1146 00:45:43,000 --> 00:45:45,600 YES, FIRST I WANTED TO SAY I 1147 00:45:45,600 --> 00:45:47,680 ENDORSE FULLY WHAT DR. TABAK 1148 00:45:47,680 --> 00:45:51,440 SAID, IT'S VERY IMPORTANT TO 1149 00:45:51,440 --> 00:45:54,080 DEFER TO TRIBAL IRBs AND OTHER 1150 00:45:54,080 --> 00:45:54,840 TRIBAL RESEARCH GOVERNANCE 1151 00:45:54,840 --> 00:45:57,640 STRUCTURES AND YOU WILL HEAR 1152 00:45:57,640 --> 00:46:00,160 MORE FROM ME LATER THIS 1153 00:46:00,160 --> 00:46:01,320 AFTERNOON ABOUT CONCRETE STEPS 1154 00:46:01,320 --> 00:46:03,200 WE'RE TAKING AND CHECK LISTS AND 1155 00:46:03,200 --> 00:46:05,600 MECHANISMS THAT WE'RE USING TO 1156 00:46:05,600 --> 00:46:08,160 MAKE SURE THAT FOR EXAMPLE WHEN 1157 00:46:08,160 --> 00:46:11,920 A NONNATIVE IRB S&P INITIALLY 1158 00:46:11,920 --> 00:46:14,080 DESIGNED TO REVIEW, THAT 1159 00:46:14,080 --> 00:46:14,840 INVOLVES TRIBAL RESEARCH, WE 1160 00:46:14,840 --> 00:46:16,040 PAUSE AND MAKE SURE ALL THE 1161 00:46:16,040 --> 00:46:17,440 NECESSARY REVIEWS HAVE TAKEN 1162 00:46:17,440 --> 00:46:21,080 PLACE BEFORE WE PROCEED WITH OUR 1163 00:46:21,080 --> 00:46:22,240 PARALLEL REVIEW, ALSO REALLY 1164 00:46:22,240 --> 00:46:24,760 TRYING TO GET OUT AHEAD OF THAT 1165 00:46:24,760 --> 00:46:25,920 AND EDUCATE THE RESEARCH 1166 00:46:25,920 --> 00:46:28,080 COMMUNITY ABOUT THE NEED TO 1167 00:46:28,080 --> 00:46:29,440 START THESE CONVERSATIONS 1168 00:46:29,440 --> 00:46:30,400 EARLIER AS HAS ALREADY BEEN 1169 00:46:30,400 --> 00:46:32,000 MENTIONED SO THAT WE'RE NOT 1170 00:46:32,000 --> 00:46:33,760 PLAYING CATCH UP AT THE POINT 1171 00:46:33,760 --> 00:46:34,560 THAT A RESEARCHER SUBMITS 1172 00:46:34,560 --> 00:46:37,160 SOMETHING TO THE IRB BUT THAT 1173 00:46:37,160 --> 00:46:39,560 WE'RE ACTUALLY INTERVENING MUCH 1174 00:46:39,560 --> 00:46:41,400 EARLIER ON TO INSURE THAT EENCH 1175 00:46:41,400 --> 00:46:42,120 THE RESEARCH QUESTIONS WE'RE 1176 00:46:42,120 --> 00:46:43,640 SELECTING IS SOMETHING THAT'S 1177 00:46:43,640 --> 00:46:45,040 DONE COLLABORATIVELY AND THAT 1178 00:46:45,040 --> 00:46:46,200 INPUT HAS ALREADY BEEN GIVEN 1179 00:46:46,200 --> 00:46:50,880 INTO THE DESIGN AND THE RESEARCH 1180 00:46:50,880 --> 00:46:52,280 AND CONSENT PROCESS BUT I WILL 1181 00:46:52,280 --> 00:46:54,160 ELABORATE ON THAT LATER THIS 1182 00:46:54,160 --> 00:46:54,920 AFTERNOON AND HOPEFULLY AND 1183 00:46:54,920 --> 00:46:56,920 HAPPY TO TAKE QUESTIONS, I GUESS 1184 00:46:56,920 --> 00:46:58,040 NOW OR THEN. 1185 00:46:58,040 --> 00:46:58,320 >>GREAT. 1186 00:46:58,320 --> 00:47:04,600 THANK YOU FOR THOSE 1187 00:47:04,600 --> 00:47:04,960 ELABORATIONS: 1188 00:47:04,960 --> 00:47:05,320 >>THANK YOU. 1189 00:47:05,320 --> 00:47:09,760 NEXT WE HAVE DR. DILLARD. 1190 00:47:09,760 --> 00:47:10,120 >>THANK YOU. 1191 00:47:10,120 --> 00:47:13,080 IT'S GOOD TO SEE YOU DR. TABAK, 1192 00:47:13,080 --> 00:47:16,760 FEELS LIKE IT'S BEEN A WHILE. 1193 00:47:16,760 --> 00:47:20,600 SO I HAVE A QUESTION OR A 1194 00:47:20,600 --> 00:47:24,120 COMMENT THAT'S SORT OF RELATED 1195 00:47:24,120 --> 00:47:29,520 TO DATA SOVEREIGNTY BUT IS MAYBE 1196 00:47:29,520 --> 00:47:30,960 NOT DIRECTLY RELATED TO DATA BUT 1197 00:47:30,960 --> 00:47:32,720 KIND OF A BIGGER PICTURE 1198 00:47:32,720 --> 00:47:36,360 QUESTION IS KIND OF WHAT ARE THE 1199 00:47:36,360 --> 00:47:39,000 EFFORTS UNDERWAY AT NIH TO 1200 00:47:39,000 --> 00:47:44,680 ADDRESS SOME OF THE 1201 00:47:44,680 --> 00:47:46,640 INSTITUTIONALIZED BIASES, RACISM 1202 00:47:46,640 --> 00:47:49,080 THAT OCCURS AT DIFFERENT LEVELS 1203 00:47:49,080 --> 00:47:52,960 IN KIND OF WHAT ARE THE EFFORTS 1204 00:47:52,960 --> 00:47:57,960 IN THAT REGARD? 1205 00:47:57,960 --> 00:48:02,840 >>YEAH, SO, YOU KNOW EARLIER 1206 00:48:02,840 --> 00:48:03,920 DR. COLLINS ISSUED A STATEMENT 1207 00:48:03,920 --> 00:48:06,840 TALKING ABOUT HOW STRUCTURAL 1208 00:48:06,840 --> 00:48:09,960 RACISM WITHIN THE NIH PROCESSES 1209 00:48:09,960 --> 00:48:15,440 HAVE REALLY SERVED AS A BARRIER 1210 00:48:15,440 --> 00:48:20,880 TO INSURING TRUE DIVERSITY, TRUE 1211 00:48:20,880 --> 00:48:26,800 EQUITY, TRUE INCLUSIVITY AND WE 1212 00:48:26,800 --> 00:48:28,200 ARE CONTINUING TO WORK THROUGH 1213 00:48:28,200 --> 00:48:30,280 THESE SORT OF HARD WIRED 1214 00:48:30,280 --> 00:48:36,960 BARRIERS THAT WE'VE DONE TO 1215 00:48:36,960 --> 00:48:39,800 OURSELVES AND OBVIOUSLY THIS 1216 00:48:39,800 --> 00:48:43,760 ALSO RELATES TO INVESTIGATORS 1217 00:48:43,760 --> 00:48:48,960 AND TRAINEES FROM INDIAN 1218 00:48:48,960 --> 00:48:49,200 COUNTRY. 1219 00:48:49,200 --> 00:48:54,920 WE CONTINUE TO STRIVE TO GET A 1220 00:48:54,920 --> 00:49:00,320 BETTER DIVERSIFIED REVIEW PANEL 1221 00:49:00,320 --> 00:49:01,680 WE CONTINUE TO ENCOURAGE 1222 00:49:01,680 --> 00:49:09,960 IONIZATIONSITUTE --INSTITUTE 1223 00:49:09,960 --> 00:49:11,080 CENTERS AND TO CONSIDER 1224 00:49:11,080 --> 00:49:13,400 DIVERSITY IN THOUGHT, IN THE 1225 00:49:13,400 --> 00:49:20,440 BROADEST TERMS, RACE, ETHNICITY, 1226 00:49:20,440 --> 00:49:21,520 GENDER, LOCATION. 1227 00:49:21,520 --> 00:49:24,920 WE REALLY DO WANT TO LEARN FROM 1228 00:49:24,920 --> 00:49:26,880 THE BEST MINDS EVERYWHERE, 1229 00:49:26,880 --> 00:49:34,160 REGARDLESS OF WHERE THEY ARE. 1230 00:49:34,160 --> 00:49:35,560 WE HAVE REFINED SOME OF OUR 1231 00:49:35,560 --> 00:49:39,680 REQUIREMENTS FOR SOME OF THE 1232 00:49:39,680 --> 00:49:41,160 FELLOWSHIP PROGRAMS WHICH 1233 00:49:41,160 --> 00:49:42,080 HERETOFORE REQUIRED STANDARDIZED 1234 00:49:42,080 --> 00:49:44,600 EXAMS AS PART OF THE APPLICATION 1235 00:49:44,600 --> 00:49:48,120 PROCESS AND YOU KNOW VOLUMES 1236 00:49:48,120 --> 00:49:53,360 HAVE BEEN WRITTEN ABOUT HOW 1237 00:49:53,360 --> 00:49:54,400 STANDARDIZED EXAMS BASICALLY, 1238 00:49:54,400 --> 00:49:57,480 YOU KNOW GIVE TREMENDOUS 1239 00:49:57,480 --> 00:50:01,560 ADVANTAGE TO THOSE WHO MORE 1240 00:50:01,560 --> 00:50:04,160 WEALTHY OR WHO, YOU KNOW, COME 1241 00:50:04,160 --> 00:50:08,440 FROM YOU KNOW ENVIRONMENTS WHERE 1242 00:50:08,440 --> 00:50:11,760 THEY'RE JUST MORE RESOURCES. 1243 00:50:11,760 --> 00:50:20,040 WE HAVE TRIED TO--TO REALLY 1244 00:50:20,040 --> 00:50:21,120 EDUCATE OUR STAFF IN THE 1245 00:50:21,120 --> 00:50:23,400 APPROPRIATE WAYS TO ENGAGE WITH 1246 00:50:23,400 --> 00:50:31,320 AND WORK WITH ALL MEMBERS OF THE 1247 00:50:31,320 --> 00:50:32,080 BIOMEDICAL RESEARCH COMMUNITY. 1248 00:50:32,080 --> 00:50:36,760 AND WE'RE TRYING VERY HARD 1249 00:50:36,760 --> 00:50:38,240 TO--RECRUIT A MORE DIVERSE 1250 00:50:38,240 --> 00:50:44,240 WORKFORCE HERE AT NIH BECAUSE 1251 00:50:44,240 --> 00:50:48,400 OBVIOUSLY I CAN LEARN ABOUT 1252 00:50:48,400 --> 00:50:49,360 ISSUES RELATED TO AMERICAN 1253 00:50:49,360 --> 00:50:50,560 INDIAN AND ALASKA NATIVES BUT 1254 00:50:50,560 --> 00:50:54,720 IT'S NOT A LIVED EXPERIENCE 1255 00:50:54,720 --> 00:50:55,800 WHEREAS IF YOU HAVE SOMEBODY 1256 00:50:55,800 --> 00:50:58,760 WITH THAT LIVED EXPERIENCE, 1257 00:50:58,760 --> 00:50:59,800 THEY'RE MUCH MORE CULTURALLY 1258 00:50:59,800 --> 00:51:02,600 COMPETENT THAN I AM AND SO, IT 1259 00:51:02,600 --> 00:51:04,680 BEHOOVES US TO HAVE PEOPLE WITH 1260 00:51:04,680 --> 00:51:05,520 THAT EXPERTISE AND THAT 1261 00:51:05,520 --> 00:51:09,240 EXPERIENCE AS MEMBERS OF OUR 1262 00:51:09,240 --> 00:51:11,320 TEAM TO INSURE THAT WE LOOK AT 1263 00:51:11,320 --> 00:51:17,280 THINGS IN A FAIRER MORE EVENT 1264 00:51:17,280 --> 00:51:17,520 MANNER. 1265 00:51:17,520 --> 00:51:19,120 THOSE ARE SOME OF THE THINGS 1266 00:51:19,120 --> 00:51:19,800 WE'RE DOING. 1267 00:51:19,800 --> 00:51:22,680 DAVE IS CUEING ME AS HE POPS UP, 1268 00:51:22,680 --> 00:51:26,040 SO PLEASE DAVE, PLEASE CONTINUE. 1269 00:51:26,040 --> 00:51:26,720 >>THANKS DR. TABAK, 1 OF THE 1270 00:51:26,720 --> 00:51:28,720 IMPORTANT THINGS THAT WE'VE ALSO 1271 00:51:28,720 --> 00:51:31,080 REALLY BEEN FOCUSING ON IS 1272 00:51:31,080 --> 00:51:32,240 ENCOURAGING OUR IC PARTNERS TO 1273 00:51:32,240 --> 00:51:34,600 INCLUDE MORE LANGUAGE THAT IS 1274 00:51:34,600 --> 00:51:36,200 RECEPTIVE TO INCLUDING CULTURAL 1275 00:51:36,200 --> 00:51:37,040 APPROACHES TO CREATING 1276 00:51:37,040 --> 00:51:39,480 INTERVENTIONS AND ALSO INCLUDING 1277 00:51:39,480 --> 00:51:40,640 TRIBAL COMMUNITIES TO WANT TO 1278 00:51:40,640 --> 00:51:42,240 PARTICIPATE IN SOME OF THE 1279 00:51:42,240 --> 00:51:44,520 STUDIES THAT WE'VE BEEN 1280 00:51:44,520 --> 00:51:44,880 SUPPORTING. 1281 00:51:44,880 --> 00:51:47,160 SO THAT'S--THAT COMPONENT OF IT 1282 00:51:47,160 --> 00:51:48,360 IS ALSO EQUALLY IMPORTANT SO 1283 00:51:48,360 --> 00:51:50,840 THAT THERE'S MORE AWARENESS 1284 00:51:50,840 --> 00:51:53,560 ACROSS THE SCIENTIFIC ENDEAVOR 1285 00:51:53,560 --> 00:51:54,720 OR COMMUNITY ABOUT THE 1286 00:51:54,720 --> 00:51:56,120 IMPORTANCE OF INCLUDING CULTURE 1287 00:51:56,120 --> 00:52:02,040 AND TRADITION INTO THE STUDY'S 1288 00:52:02,040 --> 00:52:04,120 DESIGN AND WITH THAT COMES 1289 00:52:04,120 --> 00:52:05,640 EVERYTHING ELSE ABOUT COMMUNITY 1290 00:52:05,640 --> 00:52:06,320 ENGAGEMENT, CO COLLABORATIONS 1291 00:52:06,320 --> 00:52:07,960 AND ALL OF THESE THINGS THAT 1292 00:52:07,960 --> 00:52:10,200 WE'RE ALSO ENCOURAGING OUR IC 1293 00:52:10,200 --> 00:52:15,240 PARTNERS TO SUPPORT MOVING 1294 00:52:15,240 --> 00:52:15,480 FORWARD. 1295 00:52:15,480 --> 00:52:18,440 >>AND IF I MAY, JUST 1 FINAL 1296 00:52:18,440 --> 00:52:22,920 POINT, WE HAVE BEEN INCREASINGLY 1297 00:52:22,920 --> 00:52:24,640 IDENTIFYING FUNDING 1298 00:52:24,640 --> 00:52:26,640 OPPORTUNITIES THAT ARE TAILORED 1299 00:52:26,640 --> 00:52:28,000 FOR INDIVIDUALS FROM TRIBAL 1300 00:52:28,000 --> 00:52:31,480 NATIONS AND I MENTIONED A COUPLE 1301 00:52:31,480 --> 00:52:32,120 OF THEM TODAY. 1302 00:52:32,120 --> 00:52:36,560 IF YOU WANT TO BUILD A STRONGER 1303 00:52:36,560 --> 00:52:38,960 RESEARCH INFRASTRUCTURE IN 1304 00:52:38,960 --> 00:52:40,760 INDIAN COUNTRY, BECAUSE THE 1305 00:52:40,760 --> 00:52:44,640 ULTIMATE GOAL IS TO DEVELOP A 1306 00:52:44,640 --> 00:52:50,920 CADRE, A STRONG CADRE OF 1307 00:52:50,920 --> 00:52:52,880 SCIENTIFIC INVESTIGATORS FROM 1308 00:52:52,880 --> 00:52:55,000 YOUR RESPECTIVE NATIONS WHO WILL 1309 00:52:55,000 --> 00:52:56,600 BE IN THE BEST POSSIBLE POSITION 1310 00:52:56,600 --> 00:52:59,000 TO APPLY FOR FUTURE FUNDING, WHO 1311 00:52:59,000 --> 00:53:01,080 WILL BE IN THE BEST POSSIBLE 1312 00:53:01,080 --> 00:53:02,840 POSITION TO ANALYZE DATA THISSA 1313 00:53:02,840 --> 00:53:04,560 IS COLLECTED FROM YOUR 1314 00:53:04,560 --> 00:53:07,320 COMMUNITIES AND THE BEST 1315 00:53:07,320 --> 00:53:10,240 POSSIBLE POSITION TO USE THOSE 1316 00:53:10,240 --> 00:53:12,960 DATA IN PRODUCTIVE WAYS TO 1317 00:53:12,960 --> 00:53:14,160 BENEFIT THE HEALTH. 1318 00:53:14,160 --> 00:53:16,360 YOUR RESPECTIVE NATIONS, SO ALL 1319 00:53:16,360 --> 00:53:17,960 OF THESE THINGS, YOU KNOW ARE 1320 00:53:17,960 --> 00:53:24,240 PART OF WHAT WE ARE TRYING TO DO 1321 00:53:24,240 --> 00:53:24,840 AT NIH. 1322 00:53:24,840 --> 00:53:29,200 >>IF I MAY ADD, ALSO, 1323 00:53:29,200 --> 00:53:30,160 DR. TABAK, I THINK ALSO MANY OF 1324 00:53:30,160 --> 00:53:34,160 THE TRAINING PROGRAMS WE ARE 1325 00:53:34,160 --> 00:53:35,680 INITIATING AT THE--AT ALL LEVELS 1326 00:53:35,680 --> 00:53:37,320 WHETHER IT'S IN GRAD SCHOOL, 1327 00:53:37,320 --> 00:53:38,360 UNDERGRAD OR EVEN IN HIGH SCHOOL 1328 00:53:38,360 --> 00:53:43,160 IS TO TRY AND BUILD THIS CADRE 1329 00:53:43,160 --> 00:53:47,480 THAT DR. TABAK HAS MENTIONED OF 1330 00:53:47,480 --> 00:53:48,880 FUTURE RESEARCHERS FROM TRIBAL 1331 00:53:48,880 --> 00:53:52,200 NATIONS, SO THAT THEY ARE AN 1332 00:53:52,200 --> 00:53:53,400 INTEGRAL PART OF THE PROGRAMS 1333 00:53:53,400 --> 00:53:55,720 THAT WE'LL BE LAUNCHING IN THE 1334 00:53:55,720 --> 00:53:56,120 FUTURE. 1335 00:53:56,120 --> 00:53:56,400 >>SURE. 1336 00:53:56,400 --> 00:53:58,640 AND I THINK, YOU KNOW THIS ISSUE 1337 00:53:58,640 --> 00:54:01,000 STRUCTURAL RACISM IS A REALLY 1338 00:54:01,000 --> 00:54:01,560 TOUGH 1, RIGHT? 1339 00:54:01,560 --> 00:54:06,960 BECAUSE, YOU KNOW FOLKS LIKE 1340 00:54:06,960 --> 00:54:07,880 YOURSELF, DR. TABAK, 1341 00:54:07,880 --> 00:54:08,840 DR. EISINGER PART OF HOW YOU GOT 1342 00:54:08,840 --> 00:54:11,040 TO YOUR POSITION WAS BEING 1343 00:54:11,040 --> 00:54:12,960 SUCCESSFUL IN THESE DIFFERENT 1344 00:54:12,960 --> 00:54:16,080 STRUCTURES, YOU KNOW, ACADEMIA 1345 00:54:16,080 --> 00:54:18,280 WITHIN NIH AND PROGRAM OFFICERS, 1346 00:54:18,280 --> 00:54:20,680 ALSO ARE, YOU KNOW SUCCESSFUL 1347 00:54:20,680 --> 00:54:21,680 RESEARCHERS, YOU KNOW AND WE'VE 1348 00:54:21,680 --> 00:54:24,200 TALKED A LOT ABOUT CSR. 1349 00:54:24,200 --> 00:54:28,720 ONE OF THE SUGGESTIONS THAT I 1350 00:54:28,720 --> 00:54:34,160 HAD AND IT'S ALSO RELATED TO A 1351 00:54:34,160 --> 00:54:38,240 QUESTION IS SO I THINK THAT 1352 00:54:38,240 --> 00:54:39,280 THERE ARE EXAMPLES OF IN 1353 00:54:39,280 --> 00:54:44,200 HEALTHCARE OF HOW TRIBES WHICH 1354 00:54:44,200 --> 00:54:45,840 CARE WAS PREVIOUSLY PROVIDED BY 1355 00:54:45,840 --> 00:54:48,120 INDIAN HEALTH SERVICE, YOU KNOW 1356 00:54:48,120 --> 00:54:52,200 HOW TRIBES HAVE REALLY COMPACTED 1357 00:54:52,200 --> 00:54:54,920 THAT RESPONSIBILITY AND STARTED 1358 00:54:54,920 --> 00:55:00,000 TO PROVIDE THOSE SERVICES TO 1359 00:55:00,000 --> 00:55:03,960 THEIR OWN TRIBAL MEMBERS AND THE 1360 00:55:03,960 --> 00:55:06,040 ALASKA TRIBAL SYSTEM HAS, YOU 1361 00:55:06,040 --> 00:55:08,320 KNOW DRAMATICALLY CHANGED THE 1362 00:55:08,320 --> 00:55:09,680 HEALTHCARE SYSTEM AND HAS BEEN 1363 00:55:09,680 --> 00:55:11,920 ABLE TO YOU KNOW REALLY REBUILD 1364 00:55:11,920 --> 00:55:15,280 IT, I THINK FROM THE GROUND UP. 1365 00:55:15,280 --> 00:55:16,760 NOT THROWING OUT EVERYTHING, 1366 00:55:16,760 --> 00:55:17,120 RIGHT? 1367 00:55:17,120 --> 00:55:21,680 THERE WERE MANY SUCCESSFUL PARTS 1368 00:55:21,680 --> 00:55:22,280 OF INDIAN HEALTH SERVICE. 1369 00:55:22,280 --> 00:55:23,960 BUT YOU KNOW I GUESS THE 1370 00:55:23,960 --> 00:55:27,280 QUESTION THAT I HAVE IS, YOU 1371 00:55:27,280 --> 00:55:30,120 KNOW COULD NIH LEARN FROM SOME, 1372 00:55:30,120 --> 00:55:35,160 YOU KNOW, LEARN FROM THE 1373 00:55:35,160 --> 00:55:37,000 HEALTHCARE EXAMPLE OF HOW THAT 1374 00:55:37,000 --> 00:55:41,200 HAS BECOME A BETTER SYSTEM FOR 1375 00:55:41,200 --> 00:55:44,160 NATIVE PEOPLES, BUT YOU KNOW I 1376 00:55:44,160 --> 00:55:45,760 ALSO--WE'VE TALKED AT DIFFERENT 1377 00:55:45,760 --> 00:55:47,600 TIMES ON THE TAC OF TRIBAL SET 1378 00:55:47,600 --> 00:55:49,920 ASIDES BUT I AM WONDERING ABOUT 1379 00:55:49,920 --> 00:55:55,320 THIS CONCEPT OF COMPACTING WHICH 1380 00:55:55,320 --> 00:55:57,560 WOULD ENABLE, YOU KNOW, FUNDS, 1381 00:55:57,560 --> 00:56:00,200 TO GO DIRECTLY TO TRIBES OR 1382 00:56:00,200 --> 00:56:01,960 TRIBAL ENTITIES WHO CAN THEN 1383 00:56:01,960 --> 00:56:02,880 BUILD THE INFRASTRUCTURE IN A 1384 00:56:02,880 --> 00:56:06,760 WAY THAT REALLY WORKS INSTEAD OF 1385 00:56:06,760 --> 00:56:10,600 HAVING TO GO THROUGH THESE 1386 00:56:10,600 --> 00:56:12,400 DIFFERENT STRUCTURES WHICH 1387 00:56:12,400 --> 00:56:14,040 REALLY DON'T SHARE SOME OF 1388 00:56:14,040 --> 00:56:15,480 THE--MAYBE SOME OF THE SAME 1389 00:56:15,480 --> 00:56:17,200 VALUES, SOME OF THE SAME WAYS OF 1390 00:56:17,200 --> 00:56:22,960 LOOKING AT THE WORLD, AND YOU 1391 00:56:22,960 --> 00:56:27,200 KNOW ONCE AGAIN, I GUESS IT'S A 1392 00:56:27,200 --> 00:56:29,240 QUESTION I HAVE, OF WHY COULDN'T 1393 00:56:29,240 --> 00:56:30,000 THAT BE POSSIBLE? 1394 00:56:30,000 --> 00:56:34,600 >>YEAH, SO I GUESS THE SHORT 1395 00:56:34,600 --> 00:56:39,320 ANSWER IS IT IS POSSIBLE, WE ARE 1396 00:56:39,320 --> 00:56:49,520 BEGINNING TO EXPLORE APPROACHES 1397 00:56:49,520 --> 00:56:50,920 LIKE THIS. 1398 00:56:50,920 --> 00:56:52,440 I THINK AND ACTUALLY THIS WOULD 1399 00:56:52,440 --> 00:56:54,080 BE A GOOD CONVERSATION TO HAVE 1400 00:56:54,080 --> 00:57:01,520 WITH TAC IN THE FUTURE BECAUSE 1401 00:57:01,520 --> 00:57:03,200 THE VERY NATURE OF SCIENCE, 1402 00:57:03,200 --> 00:57:07,560 SCIENTIFIC INQUIRY IS SORT OF 1403 00:57:07,560 --> 00:57:10,120 UNIVERSAL ENGAGEMENT SHARING 1404 00:57:10,120 --> 00:57:11,400 INTERACTION AND SO FORTH AND SO, 1405 00:57:11,400 --> 00:57:14,560 YOU WOULD WANT TO DO THIS IN A 1406 00:57:14,560 --> 00:57:19,000 WAY--SO UNLIKE A HEALTHCARE 1407 00:57:19,000 --> 00:57:20,600 SYSTEM WHICH CAN BE--ISOLATED IS 1408 00:57:20,600 --> 00:57:21,800 NOT THE RIGHT WORD BUT I CAN'T 1409 00:57:21,800 --> 00:57:26,240 THINK OF A BETTER WORD AT THE 1410 00:57:26,240 --> 00:57:26,800 MOMENT. 1411 00:57:26,800 --> 00:57:28,200 UNLIKE A HEALTHCARE SYSTEM WHICH 1412 00:57:28,200 --> 00:57:30,440 CAN BE SET OFF ON THE SIDE AND 1413 00:57:30,440 --> 00:57:35,240 FUNCTION REALLY, REALLY WELL AND 1414 00:57:35,240 --> 00:57:36,320 DELIVER GREAT CARE, FOR SCIENCE 1415 00:57:36,320 --> 00:57:39,400 TO HAVE THE MAXIMUM IMPACT, IT 1416 00:57:39,400 --> 00:57:40,840 HAS TO BE COMPLETELY ENGAGING 1417 00:57:40,840 --> 00:57:42,240 WITH THE REST OF THE SCIENTIFIC 1418 00:57:42,240 --> 00:57:42,520 COMMUNITY. 1419 00:57:42,520 --> 00:57:44,800 SO WE HAVE TO STRIKE A BALANCE 1420 00:57:44,800 --> 00:57:48,160 BUT NO, I TAKE YOUR POINT AND WE 1421 00:57:48,160 --> 00:57:49,800 ARE--WE HAVE BEGUN THROUGH THE 1422 00:57:49,800 --> 00:57:51,440 NATIONAL INSTITUTE OF MINOR 1423 00:57:51,440 --> 00:57:52,880 HEALTH AND HEALTH DISPARITIES TO 1424 00:57:52,880 --> 00:57:59,800 PROVIDE SOME RESOURCES THAT ARE 1425 00:57:59,800 --> 00:58:01,320 NOT SUBSCRIBED TO PRECISELY WHAT 1426 00:58:01,320 --> 00:58:06,160 1 NEEDS TO DO WITH THEM AND THEY 1427 00:58:06,160 --> 00:58:07,400 >>IT IT CAN BE USED FOR 1428 00:58:07,400 --> 00:58:07,760 INFRASTRUCTURE. 1429 00:58:07,760 --> 00:58:11,600 I TAKE YOUR POINT THAT WE SHOULD 1430 00:58:11,600 --> 00:58:13,120 FIGURE OUT HOW TO DO MORE OF 1431 00:58:13,120 --> 00:58:17,680 THAT GOING FORWARD. 1432 00:58:17,680 --> 00:58:18,240 YEAH. 1433 00:58:18,240 --> 00:58:20,120 LET ME LEAVE AT IT AT THAT. 1434 00:58:20,120 --> 00:58:22,280 I DO TAKE YOUR POINT. 1435 00:58:22,280 --> 00:58:24,720 >>I APPRECIATE THAT, THANK YOU. 1436 00:58:24,720 --> 00:58:28,320 >>THANK YOU. 1437 00:58:28,320 --> 00:58:31,640 WE HAVE ANOTHER QUESTION. 1438 00:58:31,640 --> 00:58:32,440 >>GOOD AFTERNOON. 1439 00:58:32,440 --> 00:58:35,680 I REALLY APPRECIATE THE 1440 00:58:35,680 --> 00:58:36,320 OPPORTUNITY TO ASK QUESTIONS 1441 00:58:36,320 --> 00:58:37,880 THIS MORNING AND MY APOLOGIES 1442 00:58:37,880 --> 00:58:38,880 FOR JOINING LATE. 1443 00:58:38,880 --> 00:58:40,680 I WAS IN ANOTHER TRIBAL ADVISORY 1444 00:58:40,680 --> 00:58:42,920 GROUP MEETING THAT NEEDED MY 1445 00:58:42,920 --> 00:58:43,600 ATTENTION. 1446 00:58:43,600 --> 00:58:46,360 MY QUESTION FOR DR. TABAK AND I 1447 00:58:46,360 --> 00:58:49,160 APOLOGIZE IF THIS WAS ALREADY 1448 00:58:49,160 --> 00:58:49,560 DISCUSSED. 1449 00:58:49,560 --> 00:58:52,280 SO, I WAS JUST WONDERING, WHAT 1450 00:58:52,280 --> 00:58:53,800 IS REQUIRED OF INDIVIDUAL 1451 00:58:53,800 --> 00:58:56,280 RESEARCHERS AND P.I.s TO 1452 00:58:56,280 --> 00:58:59,000 DEMONSTRATE TRIBAL SUPPORT BUT 1453 00:58:59,000 --> 00:59:01,120 ALSO CONSIDERING SUPPORT THAT 1454 00:59:01,120 --> 00:59:04,080 INVOLVES AMERICAN INDIAN, ALASKA 1455 00:59:04,080 --> 00:59:05,360 NATIVES, WITH DATA THAT IS 1456 00:59:05,360 --> 00:59:07,240 SELECTED OFF THE RESERVATION. 1457 00:59:07,240 --> 00:59:09,240 AND I WAS WONDERING, DOES THE 1458 00:59:09,240 --> 00:59:10,640 GUIDANCE DOCUMENT INCLUDE 1459 00:59:10,640 --> 00:59:13,120 LANGUAGE THAT TALKS ABOUT THIS 1460 00:59:13,120 --> 00:59:15,160 SPECIFIC TYPE OF, THIS UNIQUE 1461 00:59:15,160 --> 00:59:16,040 SITUATION, BECAUSE PROTECTION 1462 00:59:16,040 --> 00:59:21,120 SHOULD BE IN PLACE AS WELL. 1463 00:59:21,120 --> 00:59:23,360 >>LET ME TURN TO DAVE WHO WILL 1464 00:59:23,360 --> 00:59:26,640 ARTICULATE THIS MORE CLEARLY 1465 00:59:26,640 --> 00:59:27,320 THAN I WILL. 1466 00:59:27,320 --> 00:59:30,080 >>YES, THANK YOU DR. TABAK. 1467 00:59:30,080 --> 00:59:32,240 THE DOCUMENT WILL ADDRESS ALL OF 1468 00:59:32,240 --> 00:59:39,000 THOSE POINTS AND ITEMS. 1469 00:59:39,000 --> 00:59:42,840 THE -- THOSE WHO WE BROUGHT 1470 00:59:42,840 --> 00:59:44,880 TOGETHER, WHO PROVIDED CRITICAL 1471 00:59:44,880 --> 00:59:46,880 INPUT ABOUT THE CONSIDERATIONS 1472 00:59:46,880 --> 00:59:49,000 THAT NEED TODAY LOOKED AT AND 1473 00:59:49,000 --> 00:59:49,960 ADDRESSED BEFORE REECE SEARCH 1474 00:59:49,960 --> 00:59:51,240 CAN MOVE FORWARD. 1475 00:59:51,240 --> 00:59:52,600 THOSE ARE DEFINITELY INCLUDED IN 1476 00:59:52,600 --> 00:59:55,280 THAT DOCUMENT. 1477 00:59:55,280 --> 00:59:56,200 PLEASE STAY TUNED WE'RE 1478 00:59:56,200 --> 00:59:59,040 ANTICIPATING THE RELEASE OF THIS 1479 00:59:59,040 --> 01:00:02,240 DOCUMENT TO BE AN INSTRUMENTAL 1480 01:00:02,240 --> 01:00:03,880 PART OF HOW WE INCLUDE SOME OF 1481 01:00:03,880 --> 01:00:06,520 THE MOVE VULNERABLE, I WOULD 1482 01:00:06,520 --> 01:00:12,400 SAY, OR THOSE THAT ARE HIGH 1483 01:00:12,400 --> 01:00:13,440 SUSCEPTIBLE TO MAKE THEM TAKE 1484 01:00:13,440 --> 01:00:15,000 ADVANTAGE OF THE IMPORTANT 1485 01:00:15,000 --> 01:00:16,040 BIOMEDICAL RESEARCH FINDINGS 1486 01:00:16,040 --> 01:00:18,320 THAT HAPPENED AT NIH. 1487 01:00:18,320 --> 01:00:19,120 SO, YEAH. 1488 01:00:19,120 --> 01:00:23,520 I'LL LEAVE IT AT THAT. 1489 01:00:23,520 --> 01:00:25,760 >>CURRENTLY, WHAT REQUIRED OF 1490 01:00:25,760 --> 01:00:27,040 RESEARCHERS TO DEMONSTRATE 1491 01:00:27,040 --> 01:00:30,400 TRIBAL SUPPORT BECAUSE I KNOW, 1492 01:00:30,400 --> 01:00:31,920 TRIBAL RESOLUTIONS IS WHAT SEEMS 1493 01:00:31,920 --> 01:00:32,520 TO HAPPEN. 1494 01:00:32,520 --> 01:00:36,760 WHAT I WITNESS IS THAT A TRIBAL 1495 01:00:36,760 --> 01:00:39,640 RESOLUTION WILL BE OBTAINED FROM 1496 01:00:39,640 --> 01:00:40,560 A TRIBAL CONSORTIUM, BUT NOT 1497 01:00:40,560 --> 01:00:43,160 WITH THE INDIVIDUAL TRIBAL 1498 01:00:43,160 --> 01:00:52,920 NATIONS AND SO THAT CIRCUMVENTS 1499 01:00:52,920 --> 01:00:54,600 AND IT IF THEY WANT TO SUPPORT A 1500 01:00:54,600 --> 01:00:57,360 PARTICULAR STUDY SO I'M JUST 1501 01:00:57,360 --> 01:00:58,640 WONDERING, YOU KNOW -- I JUST 1502 01:00:58,640 --> 01:01:00,160 WANTED TO RAISE THAT AS AN ISSUE 1503 01:01:00,160 --> 01:01:01,360 BECAUSE IT'S A CONCERN IN OUR 1504 01:01:01,360 --> 01:01:05,200 AREA WITH RESEARCH THAT IS 1505 01:01:05,200 --> 01:01:05,440 HAPPENING. 1506 01:01:05,440 --> 01:01:07,320 >>IF I MAY, Dr. ADAM BERGER 1507 01:01:07,320 --> 01:01:08,520 FROM THE OFFICE OF SCIENCE 1508 01:01:08,520 --> 01:01:09,680 POLICY AND Dr. HALL WILL BE 1509 01:01:09,680 --> 01:01:12,320 GOING INTO THIS IN DETAIL IN A 1510 01:01:12,320 --> 01:01:15,720 PRESENTATION AT 4:25 TODAY. 1511 01:01:15,720 --> 01:01:16,400 >>THANK YOU. 1512 01:01:16,400 --> 01:01:22,920 >>SURE. 1513 01:01:22,920 --> 01:01:26,120 >>THANK YOU. 1514 01:01:26,120 --> 01:01:29,640 WE'LL GO TO Dr. JIM. 1515 01:01:29,640 --> 01:01:32,160 >>HI, THANK YOU. 1516 01:01:32,160 --> 01:01:34,960 THIS IS WITH NAVAHO NATION AND 1517 01:01:34,960 --> 01:01:37,240 I'M TRAVELING RIGHT NOW SO I 1518 01:01:37,240 --> 01:01:39,040 DON'T HAVE MY VIDEO. 1519 01:01:39,040 --> 01:01:40,800 I WANT TO ADDRESS ONE ISSUE THAT 1520 01:01:40,800 --> 01:01:44,240 CAME UP, I THINK IT'S A GOOD, I 1521 01:01:44,240 --> 01:01:46,720 GUESS, COMPLIMENT TO THE 1522 01:01:46,720 --> 01:01:50,200 QUESTION ABOUT THE 1523 01:01:50,200 --> 01:01:52,280 ACKNOWLEDGMENT OF THE TRIBAL 1524 01:01:52,280 --> 01:01:54,360 IRBs AND WE RECENTLY HAD AN 1525 01:01:54,360 --> 01:01:56,840 INCIDENT HERE ON NAVAJO WHERE 1526 01:01:56,840 --> 01:02:01,640 THE, I THINK IT'S THE -- I'M NOT 1527 01:02:01,640 --> 01:02:05,160 SURE WHICH COMPANY, IT WAS THE 1528 01:02:05,160 --> 01:02:09,280 NATIONAL COMPANY THAT CAME OUT 1529 01:02:09,280 --> 01:02:12,520 AND CONDUCTED -- THEY WERE 1530 01:02:12,520 --> 01:02:14,400 ENROLLING NAVAJO NATION 1531 01:02:14,400 --> 01:02:16,680 ADVOCATES THAT CAN DETECT BLOOD 1532 01:02:16,680 --> 01:02:18,920 AND WHAT NOT IS AT OUR FLEA 1533 01:02:18,920 --> 01:02:20,560 MARKET AND WE BROUGHT IN MOBILE 1534 01:02:20,560 --> 01:02:22,680 UNITS THAT ELI LILLY AND COMPANY 1535 01:02:22,680 --> 01:02:25,360 I THINK THAT'S WHAT IT IS CALLED 1536 01:02:25,360 --> 01:02:27,760 AND WE FOUND OUT THEY WEREN'T 1537 01:02:27,760 --> 01:02:30,120 AWARE THEY'RE NATIVE TO THE 1538 01:02:30,120 --> 01:02:31,800 NAVAJO NATION IRB APPROVAL AND 1539 01:02:31,800 --> 01:02:34,600 OUR HUMAN RESEARCH STAFF WENT 1540 01:02:34,600 --> 01:02:36,520 DOWN THERE AND ASKED, I GUESS, 1541 01:02:36,520 --> 01:02:41,000 HE MISSED THE WHOLE VAN INCIDENT 1542 01:02:41,000 --> 01:02:43,520 WHERE THEY COLLECTED SAMPLES AND 1543 01:02:43,520 --> 01:02:44,400 RECRUITED SOME INDIVIDUALS BUT 1544 01:02:44,400 --> 01:02:46,120 THEY WERE NOT AWARE THERE WAS A 1545 01:02:46,120 --> 01:02:52,560 TRIBAL IRB THEY NEED TODAY GO 1546 01:02:52,560 --> 01:02:52,800 THROUGH. 1547 01:02:52,800 --> 01:02:53,680 WE'RE STILL IN COMMUNICATION 1548 01:02:53,680 --> 01:02:55,240 WITH THE COMPANY AND I THINK 1549 01:02:55,240 --> 01:02:56,680 IT'S A SITUATION OR ISSUE THAT I 1550 01:02:56,680 --> 01:02:58,280 HOPE THAT IS IS ON YOUR LIST 1551 01:02:58,280 --> 01:03:00,280 WHEN YOU GUYS ARE LOOKING AT 1552 01:03:00,280 --> 01:03:03,400 GRANT APPLICATIONS THAT THERE IS 1553 01:03:03,400 --> 01:03:06,280 AN ACKNOWLEDGMENT OF THE TRIBAL 1554 01:03:06,280 --> 01:03:09,200 IRB AND FOR EXAMPLE, FOR THE 1555 01:03:09,200 --> 01:03:11,080 NAVAJO NATION WE HAVE AN IRB BUT 1556 01:03:11,080 --> 01:03:13,360 FOR SOME REASON THIS COMPANY, I 1557 01:03:13,360 --> 01:03:15,440 ASSUME, IS THE NATIONAL COMPANY, 1558 01:03:15,440 --> 01:03:17,200 WAS NOT AWARE THEY NEED OF TODAY 1559 01:03:17,200 --> 01:03:18,640 A TRIBAL IRB NUMBER AND THEY 1560 01:03:18,640 --> 01:03:22,920 WERE COLLECTING SAMPLES FROM 1561 01:03:22,920 --> 01:03:26,000 VICTIINDIVIDUALS SO WE'LL FURTHR 1562 01:03:26,000 --> 01:03:27,920 FIGURE OUT WHAT WAS TALLLY 1563 01:03:27,920 --> 01:03:30,520 HAPPENING BUT I WANT TODAY SHARE 1564 01:03:30,520 --> 01:03:30,720 THAT. 1565 01:03:30,720 --> 01:03:31,040 THANK YOU. 1566 01:03:31,040 --> 01:03:39,040 >>SO, I DON'T KNOW ABOUT THIS 1567 01:03:39,040 --> 01:03:43,360 SPECIFIC CIRCUMSTANCES ELI LILLY 1568 01:03:43,360 --> 01:03:45,840 IS IS A INTERNATIONAL COMPANY, A 1569 01:03:45,840 --> 01:03:46,880 MEGA COMPANY. 1570 01:03:46,880 --> 01:03:51,000 AGAIN, I HAD NEVER SAY NEVER BUT 1571 01:03:51,000 --> 01:03:53,000 IT'S HIGHLY UNLIKELY THEY HAVE 1572 01:03:53,000 --> 01:03:55,240 NIH FUNDING BECAUSE THE REALLY 1573 01:03:55,240 --> 01:03:57,280 LARGE PHARMACEUTICAL COMPANIES 1574 01:03:57,280 --> 01:04:00,440 DON'T GET NIH FUNDING. 1575 01:04:00,440 --> 01:04:02,720 AGAIN, I DON'T KNOW THE 1576 01:04:02,720 --> 01:04:03,200 SPECIFICS. 1577 01:04:03,200 --> 01:04:06,600 IF YOU DO FIND THAT NIH IN HOW 1578 01:04:06,600 --> 01:04:08,280 INVOLVED, PLEASE IMMEDIATELY LET 1579 01:04:08,280 --> 01:04:11,160 US KNOW BECAUSE AS YOU WELL 1580 01:04:11,160 --> 01:04:12,480 KNOW, WHAT YOU JUST OUTLINED IS 1581 01:04:12,480 --> 01:04:15,000 IS NOT APPROPRIATE BEHAVIOR AND 1582 01:04:15,000 --> 01:04:16,520 WE WOULD WANT TO DO WHAT WE CAN 1583 01:04:16,520 --> 01:04:19,160 TO ENSURE IT NEVER HAPPENS 1584 01:04:19,160 --> 01:04:21,400 AGAIN. 1585 01:04:21,400 --> 01:04:25,800 AGAIN, ELI LILLY IS IS APP AN 1586 01:04:25,800 --> 01:04:26,560 INTERNATIONAL COMPANY. 1587 01:04:26,560 --> 01:04:27,960 I DON'T THINK THEY WOULD HAVE 1588 01:04:27,960 --> 01:04:29,040 NIH FUNDING. 1589 01:04:29,040 --> 01:04:33,600 I NEVER, I HAVE LEARNED NEVER TO 1590 01:04:33,600 --> 01:04:38,000 SAY NEVER. 1591 01:04:38,000 --> 01:04:42,400 >>HOW ARE WE WITH THE TIME? 1592 01:04:42,400 --> 01:04:45,440 >>I'M AT TIME BUT IF THERE WAS 1593 01:04:45,440 --> 01:04:48,320 ONE ADDITIONAL QUESTION. 1594 01:04:48,320 --> 01:04:52,840 >>OK, WE HAVE ONE MORE QUESTION 1595 01:04:52,840 --> 01:05:01,480 FOR OUR DELEGATE. 1596 01:05:01,480 --> 01:05:03,680 >>GOOD AFTER I'M VICE PRESIDENT 1597 01:05:03,680 --> 01:05:07,480 FOR THE TRIBE AND I WANTED TO 1598 01:05:07,480 --> 01:05:08,840 ABOUT AFTER Dr. GYM'S COMMENT 1599 01:05:08,840 --> 01:05:11,000 MAYBE WE SHOULD GET A LIST OF 1600 01:05:11,000 --> 01:05:13,680 THE TRIBAL IRBs OR RRBs TO 1601 01:05:13,680 --> 01:05:16,240 NIH SO THEY'RE AWARE OF THOSE. 1602 01:05:16,240 --> 01:05:18,280 AND THEN, BECAUSE THOSE WOULD BE 1603 01:05:18,280 --> 01:05:20,760 THE PLACES WHERE INDIVIDUAL 1604 01:05:20,760 --> 01:05:22,400 TRIBES WOULD GET THEIR APPROVAL, 1605 01:05:22,400 --> 01:05:22,600 RIGHT. 1606 01:05:22,600 --> 01:05:24,880 THEY WOULD GO THROUGH THE TRIBAL 1607 01:05:24,880 --> 01:05:27,160 IRB OR RRB TO GET INDIVIDUAL 1608 01:05:27,160 --> 01:05:30,800 TRIBAL APPROVALS SO GOING BACK 1609 01:05:30,800 --> 01:05:34,000 TO THE QUESTION OF COMPACTING, I 1610 01:05:34,000 --> 01:05:35,200 DON'T KNOW OF ANY DIRECT FUNDING 1611 01:05:35,200 --> 01:05:37,680 THAT IS GIVEN TO TRIBES FROM NIH 1612 01:05:37,680 --> 01:05:39,920 THAT WE COULD 638 CONTRACT. 1613 01:05:39,920 --> 01:05:44,200 JUST USE APP EXAMPLE OF THE 1614 01:05:44,200 --> 01:05:45,640 ALASKA HEALTH CENTER BECAUSE 1615 01:05:45,640 --> 01:05:47,800 THAT WAS 638 CONTRACT SOD IF 1616 01:05:47,800 --> 01:05:49,400 APPROXIMATE A TRIBE CONTRACTS A 1617 01:05:49,400 --> 01:05:52,800 SERVICE THAT'S BEING PROVIDED BY 1618 01:05:52,800 --> 01:05:54,480 IHS OR ANOTHER GOVERNMENTAL 1619 01:05:54,480 --> 01:05:56,480 ENTITIES, WE'LL GET THOSE MONEY 1620 01:05:56,480 --> 01:05:58,880 DIRECT TO CONTINUE THAT WORK AND 1621 01:05:58,880 --> 01:05:59,960 HOWEVER WE DETERMINE 1622 01:05:59,960 --> 01:06:00,680 SELF-DETERMINATION, RIGHT. 1623 01:06:00,680 --> 01:06:03,760 SO I'M NOT SURE OF ANY NIH 1624 01:06:03,760 --> 01:06:06,640 FUNDING THAT GOES DIRECTLY TO 1625 01:06:06,640 --> 01:06:09,800 TRIBES THAT WE CAN 638 CONTRACT 1626 01:06:09,800 --> 01:06:12,040 AND MAYBE THE IRBs AND RRBs 1627 01:06:12,040 --> 01:06:13,640 COULD BE ONE OF THOSE THINGS WE 1628 01:06:13,640 --> 01:06:14,920 THINK ABOUT AS SNAG COULD 1629 01:06:14,920 --> 01:06:16,480 CONTRACT WHICH WOULD ENCOURAGE 1630 01:06:16,480 --> 01:06:18,120 DESCRIBES TO GET THEIR OWN IRB 1631 01:06:18,120 --> 01:06:20,720 AND RRB AND THEN THEY WOULD GET 1632 01:06:20,720 --> 01:06:22,480 INDIVIDUAL CONCEPT FROM -- AND 1633 01:06:22,480 --> 01:06:23,920 GO THROUGH THE PROCESS OF 1634 01:06:23,920 --> 01:06:26,920 ENSURING SAFETY AND THE RISK OF 1635 01:06:26,920 --> 01:06:28,960 BENEFITS ARE APPROVED AND ALL 1636 01:06:28,960 --> 01:06:30,960 THOSE PIECES ARE RESEARCH ARE 1637 01:06:30,960 --> 01:06:32,160 APPROVED BY THE DESCRIBES 1638 01:06:32,160 --> 01:06:33,560 INDIVIDUALLY SO I JUST WANTED TO 1639 01:06:33,560 --> 01:06:35,120 THROW THAT THOUGHT OUT THERE AND 1640 01:06:35,120 --> 01:06:39,240 RELATION TO THE COMPACTING 1641 01:06:39,240 --> 01:06:39,920 COMMENT AS WELL AS BRINGING UP 1642 01:06:39,920 --> 01:06:41,800 THE IRB AND RRBs. 1643 01:06:41,800 --> 01:06:42,240 THANK YOU. 1644 01:06:42,240 --> 01:06:43,640 >>THANK YOU. 1645 01:06:43,640 --> 01:06:54,080 YOU ARE WAY AHEAD OF ME MY 1646 01:06:57,480 --> 01:06:59,880 UNDERSTANDING IS THAT, AND Dr. 1647 01:06:59,880 --> 01:07:03,840 WILSON MAY BE ABLE TO ELABORATE. 1648 01:07:03,840 --> 01:07:07,480 WE HAVE AT LEAST ONE VEHICLE 1649 01:07:07,480 --> 01:07:12,360 THAT NIMHD CURRENTLY EMPLOYING 1650 01:07:12,360 --> 01:07:13,600 THAT A LOUSE LATITUDE TO THE 1651 01:07:13,600 --> 01:07:14,800 CRIME NATIONS FOR WHAT THE 1652 01:07:14,800 --> 01:07:19,120 RESOURCES THAT ARE PROVIDED IS 1653 01:07:19,120 --> 01:07:20,040 USED FOR BUT I DON'T KNOW IF 1654 01:07:20,040 --> 01:07:22,160 IT'S RELATED TO WHAT YOU JUST 1655 01:07:22,160 --> 01:07:22,880 REFERRED TO. 1656 01:07:22,880 --> 01:07:24,560 DO YOU HAVE ANY? 1657 01:07:24,560 --> 01:07:27,360 >>YEAH, THANK YOU Dr. TABAK. 1658 01:07:27,360 --> 01:07:29,840 IT'S NOT IN RELATION TO THE 1659 01:07:29,840 --> 01:07:32,080 NIMHD INITIATIVE BUT IT IS, I 1660 01:07:32,080 --> 01:07:33,360 THINK IT IS SOMETHING THAT YOU 1661 01:07:33,360 --> 01:07:35,080 HAD MENTIONED EARLIER THAT WE 1662 01:07:35,080 --> 01:07:36,560 SHOULD TABLE AND SAY FOR A 1663 01:07:36,560 --> 01:07:38,000 FUTURE DISCUSSION BECAUSE 1664 01:07:38,000 --> 01:07:44,040 THERE'S A LOT OF I INTRICACIES 1665 01:07:44,040 --> 01:07:45,000 THAT WE HAD WHEN WE HAD THIS 1666 01:07:45,000 --> 01:07:45,360 CONVERSATION. 1667 01:07:45,360 --> 01:07:46,680 >>BUT I THINK IT'S ONE THAT WE 1668 01:07:46,680 --> 01:07:47,920 SHOULD RETURN TO IN THE FUTURE? 1669 01:07:47,920 --> 01:07:51,800 >>YES. 1670 01:07:51,800 --> 01:07:52,640 >>OK. 1671 01:07:52,640 --> 01:07:55,840 I THINK WE HAVE LAST COMMENT. 1672 01:07:55,840 --> 01:07:59,520 >>I JUST HAVE ONE COMMENT. 1673 01:07:59,520 --> 01:08:01,800 RELATED TO VICE PRESIDENT 1674 01:08:01,800 --> 01:08:03,240 MUSSO'S QUESTION ABOUT THE LIST 1675 01:08:03,240 --> 01:08:06,560 OF IRBs AND THE INDIAN HOUSE 1676 01:08:06,560 --> 01:08:10,440 SERVICE NATIONAL IRB USED TO 1677 01:08:10,440 --> 01:08:14,640 MAINTAIN A LIST OF ALL INDIAN 1678 01:08:14,640 --> 01:08:18,000 HEALTH SERVICE IRBs AND MANY 1679 01:08:18,000 --> 01:08:20,000 OF THE TRIBAL IRBs AND I DON'T 1680 01:08:20,000 --> 01:08:21,400 KNOW IF THEY STILL DO THAT OR 1681 01:08:21,400 --> 01:08:22,600 STILL MAINTAINED BUT YOU CAN GO 1682 01:08:22,600 --> 01:08:26,640 TO THE IHS WEBSITE AND GET A LOT 1683 01:08:26,640 --> 01:08:29,200 OF THE INFORMATION ABOUT THE 1684 01:08:29,200 --> 01:08:30,160 IRBs THAT EXIST AND MANY OF 1685 01:08:30,160 --> 01:08:32,480 THE TRIBAL IRBs. 1686 01:08:32,480 --> 01:08:32,800 THANK YOU. 1687 01:08:32,800 --> 01:08:35,480 >>THANK YOU, WE'LL LOOK INTO 1688 01:08:35,480 --> 01:08:35,680 THAT. 1689 01:08:35,680 --> 01:08:36,280 THANK YOU. 1690 01:08:36,280 --> 01:08:39,440 >>THANK YOU DR. TABAK FOR 1691 01:08:39,440 --> 01:08:40,080 MEETING WITH US. 1692 01:08:40,080 --> 01:08:42,560 I KNOW WE COULD USE MORE TIME, 1693 01:08:42,560 --> 01:08:43,880 BUT WE DO APPRECIATE THE TIME 1694 01:08:43,880 --> 01:08:46,160 THAT YOU DID SHARE WITH US AND 1695 01:08:46,160 --> 01:08:49,400 WE DO LOOK FORWARD TO HAVING 1696 01:08:49,400 --> 01:08:51,120 ANOTHER DAY TOMORROW AND SO I 1697 01:08:51,120 --> 01:08:52,800 HOPE THAT WHEN WE GATHER ALL 1698 01:08:52,800 --> 01:08:55,240 THIS INFORMATION, YOU CAN TAKE A 1699 01:08:55,240 --> 01:08:57,280 LOOK AT WHAT WE ACCOMPLISHED IN 1700 01:08:57,280 --> 01:08:59,560 THE NEXT, WITHIN THESE MEETINGS 1701 01:08:59,560 --> 01:09:01,080 AND WE LOOK FORWARD TO 1702 01:09:01,080 --> 01:09:03,560 CONTINUING TO WORK WITH YOU AND 1703 01:09:03,560 --> 01:09:05,000 WITH THIS ACCOMPLISHING GOOD 1704 01:09:05,000 --> 01:09:07,960 THINGS FOR ALL OF US. 1705 01:09:07,960 --> 01:09:08,280 THANK YOU. 1706 01:09:08,280 --> 01:09:09,200 >>THANK YOU SO MUCH. 1707 01:09:09,200 --> 01:09:10,600 I LOOK FORWARD TO THAT AS WELL. 1708 01:09:10,600 --> 01:09:12,000 THANK YOU, EVERYBODY. 1709 01:09:12,000 --> 01:09:15,120 >>BYE-BYE. 1710 01:09:15,120 --> 01:09:17,160 >>ALL RIGHT, DAVE, Dr. WILL 1711 01:09:17,160 --> 01:09:18,680 SOP, WE'RE GOING ON BREAK NOW. 1712 01:09:18,680 --> 01:09:19,320 >>WE ARE. 1713 01:09:19,320 --> 01:09:21,320 THANK YOU SO MUCH FOR REMINDING 1714 01:09:21,320 --> 01:09:22,440 US AND I'M SURE THAT EVERYBODY 1715 01:09:22,440 --> 01:09:24,000 IS READY FOR A QUICK BREAK. 1716 01:09:24,000 --> 01:09:28,280 IF WE CAN RECONVENE AT 3:25 SO 1717 01:09:28,280 --> 01:09:30,880 THAT WOULD BE IN ABOUT 19 1718 01:09:30,880 --> 01:09:32,240 MINUTES FROM NOW. 1719 01:09:32,240 --> 01:09:34,200 SO THAT WE CAN HEAR OUR 1720 01:09:34,200 --> 01:09:36,080 PRESENTATIONS FROM Dr. PER 1721 01:09:36,080 --> 01:09:41,480 HE'S STABLPEREZ-STABLE. 1722 01:09:41,480 --> 01:09:42,880 THE NATIONAL INSTITUTE ON 1723 01:09:42,880 --> 01:09:44,680 MINORITY HEALTH AND HEALTHCARE 1724 01:09:44,680 --> 01:09:44,920 PARTIES. 1725 01:09:44,920 --> 01:09:47,320 THANK YOU FOR A ROBUST 1726 01:09:47,320 --> 01:09:50,760 CONVERSATION WITH Dr. TABAK, I 1727 01:09:50,760 --> 01:09:52,520 APPRECIATE THAT. 1728 01:09:52,520 --> 01:09:54,200 >>WELCOME BACK, I WANT TO SAY A 1729 01:09:54,200 --> 01:09:55,440 FEW THINGS BEFORE I INTRODUCE 1730 01:09:55,440 --> 01:09:56,160 OUR NEXT SPEAKER. 1731 01:09:56,160 --> 01:10:00,240 WE WANTED TO GET INTO OUR 1732 01:10:00,240 --> 01:10:02,560 DISCUSSION WITH Dr. TABAK AND 1733 01:10:02,560 --> 01:10:06,200 WE HAD A WONDERFUL CONVERSATION 1734 01:10:06,200 --> 01:10:08,360 WITH HIM. 1735 01:10:08,360 --> 01:10:10,000 AS YOU KNOW WE HAVE A PACKED 1736 01:10:10,000 --> 01:10:12,320 AGENDA AND NEXT IS GOING TO BE 1737 01:10:12,320 --> 01:10:14,000 Dr. PEREZ-STABLE WHO IS THE 1738 01:10:14,000 --> 01:10:15,440 DIRECTOR OF THE NATIONAL 1739 01:10:15,440 --> 01:10:19,440 INSTITUTE OF MINORITY HEATH AND 1740 01:10:19,440 --> 01:10:20,280 HEALTH DISPARITIES. 1741 01:10:20,280 --> 01:10:22,240 HE TALK ABOUT THE TRIBAL DATA 1742 01:10:22,240 --> 01:10:24,320 REPOSITORY AND FUNDING FUNDS FOR 1743 01:10:24,320 --> 01:10:26,400 THE TRIBAL EPIDEMIOLOGY CENTERS 1744 01:10:26,400 --> 01:10:27,920 AND FOLLOWED BY THAT 1745 01:10:27,920 --> 01:10:29,200 PRESENTATION, WE'RE GOING TO 1746 01:10:29,200 --> 01:10:31,240 HAVE A PRESENTATION ON 1747 01:10:31,240 --> 01:10:35,800 ARTIFICIAL INTELLIGENCE AND THEN 1748 01:10:35,800 --> 01:10:38,040 FOLLOWING THAT, THE 1749 01:10:38,040 --> 01:10:39,040 MUCH-ANTICIPATED CONVERSATION 1750 01:10:39,040 --> 01:10:39,800 AROUND THE NIH POLICY 1751 01:10:39,800 --> 01:10:41,600 PROTECTIONS AND IMPLICATIONS FOR 1752 01:10:41,600 --> 01:10:43,480 ETHICAL CONDUCT OF RESEARCH WITH 1753 01:10:43,480 --> 01:10:44,160 TRIBAL COMMUNITIES. 1754 01:10:44,160 --> 01:10:46,440 THIS INCLUDING GENETIC RESEARCH. 1755 01:10:46,440 --> 01:10:54,240 SO WE HAVE A WONDERFUL AGENDA 1756 01:10:54,240 --> 01:10:56,240 AND WE ARE POSTING THE 1757 01:10:56,240 --> 01:10:57,640 REPRESENTATIONS INTO THE NIH BOX 1758 01:10:57,640 --> 01:10:59,080 SYSTEM AND YOU ALL HAVE ACCESS 1759 01:10:59,080 --> 01:10:59,320 TO. 1760 01:10:59,320 --> 01:11:01,320 SO, PLEASE, IF YOU HAVE THE 1761 01:11:01,320 --> 01:11:07,440 OPPORTUNITY, GO IN AND REVIEW 1762 01:11:07,440 --> 01:11:08,960 THE PRESENTATIONS FOR TOMORROW. 1763 01:11:08,960 --> 01:11:11,000 WITH THAT I WANT TO SAY, LET'S 1764 01:11:11,000 --> 01:11:13,960 INTRODUCE WELCOME OUR NEXT 1765 01:11:13,960 --> 01:11:14,640 SPEAKER. 1766 01:11:14,640 --> 01:11:18,160 Dr. PEREZ-STABLE WHO IS GOING 1767 01:11:18,160 --> 01:11:20,840 TO TALK ABOUT THE TRIBE DATA 1768 01:11:20,840 --> 01:11:24,960 REPOSITORY AND EPICENTRE FUNDING 1769 01:11:24,960 --> 01:11:30,000 INITIATIVES AT NIMHD. 1770 01:11:30,000 --> 01:11:32,920 >>EVERYONE HEAR ME OK? 1771 01:11:32,920 --> 01:11:39,920 THANK YOU, VERY MUCH, DAVE AND 1772 01:11:39,920 --> 01:11:45,480 IT'S AN HONOR TO BE WITH YOU. 1773 01:11:45,480 --> 01:11:47,920 CONSIDER FRIENDS AT NIMHD 1774 01:11:47,920 --> 01:11:49,360 ADDRESSING MINORITY HEALTH AND 1775 01:11:49,360 --> 01:11:50,880 HEALTH DISPARITIES IS VERY MUCH 1776 01:11:50,880 --> 01:11:53,160 ALIGNED WITH THE NEEDS OF TRIBAL 1777 01:11:53,160 --> 01:11:53,440 COMMUNITIES. 1778 01:11:53,440 --> 01:11:57,600 I'M GOING TO SHARE MY SCREEN TO 1779 01:11:57,600 --> 01:12:03,320 SHOW YOU THE SLIDES I PREPARED 1780 01:12:03,320 --> 01:12:13,840 FOR TODAY AND I'VE BEEN AT NIH 1781 01:12:15,080 --> 01:12:15,600 FOR SEVEN AND A HALF YEARS AND 1782 01:12:15,600 --> 01:12:17,480 THERE'S NEVER A DAY THAT I DON'T 1783 01:12:17,480 --> 01:12:17,960 LEARN SOMETHING. 1784 01:12:17,960 --> 01:12:21,920 I WANT TO START WITH A BIT OF 1785 01:12:21,920 --> 01:12:23,640 APP UP BEAT NOTE ABOUT THE 1786 01:12:23,640 --> 01:12:24,200 EXPERIENCE OF THE PANDEMIC. 1787 01:12:24,200 --> 01:12:25,480 THESE ARE DATA THAT ARE A YEAR 1788 01:12:25,480 --> 01:12:28,640 OLD BUT IT'S THE LAST THING THAT 1789 01:12:28,640 --> 01:12:30,400 MMWR PUBLISHED ON IMMUNIZATIONS. 1790 01:12:30,400 --> 01:12:32,880 YOU CAN SEE HERE, WHERE WE WERE 1791 01:12:32,880 --> 01:12:35,680 IN APRIL OF 2021, FIVE MONTHS 1792 01:12:35,680 --> 01:12:38,360 AFTER THE VACCINE, IT WAS 1793 01:12:38,360 --> 01:12:40,120 AVAILABLE AND WHERE WE ARE AND 1794 01:12:40,120 --> 01:12:42,880 WERE IN NOVEMBER 2021 SO MARKED 1795 01:12:42,880 --> 01:12:47,520 INCREASES THAT DIDN'T ELIMINATE 1796 01:12:47,520 --> 01:12:49,160 BUT DIMINISHED AK IS CEASE AND 1797 01:12:49,160 --> 01:12:52,440 AMERICAN AND ALASKA NATIVES YOU 1798 01:12:52,440 --> 01:12:53,600 FURTHER HYPED BUT THEY WORKED TO 1799 01:12:53,600 --> 01:12:56,080 BEGIN WITH AND I THINK THAT THIS 1800 01:12:56,080 --> 01:12:57,840 IS SOMETHING THAT ALL OF YOU, 1801 01:12:57,840 --> 01:13:01,840 ALL OF US, REALLY WORKED HARD TO 1802 01:13:01,840 --> 01:13:03,160 ADDRESS AND THIS IS CREDIT THAT 1803 01:13:03,160 --> 01:13:05,920 GOES TO THEM. 1804 01:13:05,920 --> 01:13:07,560 MORE IMPORTANTLY, THESE ARE DATA 1805 01:13:07,560 --> 01:13:08,760 THAT WERE ACTUALLY PUT TOGETHER 1806 01:13:08,760 --> 01:13:12,600 BY THE "NEW YORK TIMES" AND FROM 1807 01:13:12,600 --> 01:13:16,360 THE CKC AND THESE ARE NOT 1808 01:13:16,360 --> 01:13:19,640 ADJUSTED FOR AGE BUT THE 1809 01:13:19,640 --> 01:13:20,800 IMPORTANT THING AS OF THE SUMMER 1810 01:13:20,800 --> 01:13:24,320 OF THIS YEAR, THESE LINES WERE 1811 01:13:24,320 --> 01:13:26,440 NOT SEPARATE AND WITH A LIT OF 1812 01:13:26,440 --> 01:13:27,640 DIFFERENCE HERE, SLIGHTLY HIGHER 1813 01:13:27,640 --> 01:13:29,280 FOR ONE GROUP AND LOWER FOR 1814 01:13:29,280 --> 01:13:31,400 ANOTHER GROUP AND THE DEATH 1815 01:13:31,400 --> 01:13:36,160 RATES ACROSS THE COUNTRY, WHICH 1816 01:13:36,160 --> 01:13:37,480 WERE DIFFERENT FROM THE 1817 01:13:37,480 --> 01:13:39,000 BEGINNING OF THE PANDEMIC AND 1818 01:13:39,000 --> 01:13:44,680 WITH DIFFERENT SURGES AND WE SEE 1819 01:13:44,680 --> 01:13:45,680 AMERICAN INDIAN AND ALASKA 1820 01:13:45,680 --> 01:13:47,440 NATIVE SURGE AND LATINO 1821 01:13:47,440 --> 01:13:50,320 HISPANICS WERE UP ALL THE TIME 1822 01:13:50,320 --> 01:13:53,120 AND IN THESE ARE REALLY GONE 1823 01:13:53,120 --> 01:13:53,960 MOSTLY AWAY FOR NOW. 1824 01:13:53,960 --> 01:13:55,120 LET'S SEE WHAT HAPPENS THIS 1825 01:13:55,120 --> 01:13:55,560 WINTER. 1826 01:13:55,560 --> 01:13:57,920 AND THIS IS AGAIN CREDIT TO OUR 1827 01:13:57,920 --> 01:13:59,800 COMMUNITIES AND CREDIT TO THE 1828 01:13:59,800 --> 01:14:00,480 PROFESSIONALS, IN OUR 1829 01:14:00,480 --> 01:14:01,640 COMMUNITIES AND IT IT REALLY 1830 01:14:01,640 --> 01:14:03,920 WENT OUT OF THEIR WAY TO PROMOTE 1831 01:14:03,920 --> 01:14:08,000 THE VACCINES AND THIS ALL IN 1832 01:14:08,000 --> 01:14:11,200 EFFECT OF ACCEPTING AND GETTING 1833 01:14:11,200 --> 01:14:12,080 VACCINATED. 1834 01:14:12,080 --> 01:14:15,800 SO SWITCHING TO RADX UP, THESE 1835 01:14:15,800 --> 01:14:19,800 ARE THE PROJECTS THAT ARE FUNDED 1836 01:14:19,800 --> 01:14:21,920 THAT INCLUDE SIGNIFICANT NOT 1837 01:14:21,920 --> 01:14:26,160 NUMBERS OF AMERICAN INDIAN AND 1838 01:14:26,160 --> 01:14:34,600 ALASKA NATIVES, AND IT'S ALL THE 1839 01:14:34,600 --> 01:14:38,040 WAY OUT TO GUAM. 1840 01:14:38,040 --> 01:14:40,640 HAD ARE PRIMARY PROJECTS FUNDED 1841 01:14:40,640 --> 01:14:45,280 TO FOCUS ON NATIVE POPULATIONS 1842 01:14:45,280 --> 01:14:46,360 AND THEY ARE LISTED HERE. 1843 01:14:46,360 --> 01:14:49,880 I THINK IN THIS AUDIENCE, I 1844 01:14:49,880 --> 01:14:51,080 PREVIOUSLY WENT THROUGH THE 1845 01:14:51,080 --> 01:14:53,360 PROJECTS AND THE IPSOS-REID 1846 01:14:53,360 --> 01:14:54,240 TUESDAY OF THE TRIBAL DATA 1847 01:14:54,240 --> 01:14:55,920 REPOSITORY CONSULTATION AND 1848 01:14:55,920 --> 01:14:57,960 THESE ARE THE PRINCIPLE 1849 01:14:57,960 --> 01:14:59,800 INVESTIGATORS AND WITH BRIEF 1850 01:14:59,800 --> 01:15:05,200 SUMMARY AT THE BEGINNING AND THE 1851 01:15:05,200 --> 01:15:08,040 LOCATE OF WHERE THEY'RE WORKING 1852 01:15:08,040 --> 01:15:10,880 AND YOU WILL HAVE ACCESS TO 1853 01:15:10,880 --> 01:15:11,480 THOSE SLIDES. 1854 01:15:11,480 --> 01:15:12,640 IT'S WELL-KNOWN INVESTIGATORS 1855 01:15:12,640 --> 01:15:16,400 AND NEW INVESTIGATORS AND NOT 1856 01:15:16,400 --> 01:15:20,480 ALL OF NARRATIVE NAR NATIVE AND. 1857 01:15:20,480 --> 01:15:23,760 THEY'RE ALL ACADEMIC AWARDEES 1858 01:15:23,760 --> 01:15:25,400 WITH THE CHAR KEY NATION BEING 1859 01:15:25,400 --> 01:15:27,520 THE EXCEPTION. 1860 01:15:27,520 --> 01:15:30,080 SO RADX UP NOW INTO ITS 1861 01:15:30,080 --> 01:15:34,160 APPROACHING ITS THIRD YEAR OF 1862 01:15:34,160 --> 01:15:37,800 APPROPRIATIONS, HAS BEEN A 1863 01:15:37,800 --> 01:15:38,760 REMARKABLE EXPERIENCE FOR US AT 1864 01:15:38,760 --> 01:15:39,000 NIH. 1865 01:15:39,000 --> 01:15:43,880 IT'S IN MANY WAYS THE SINGLE 1866 01:15:43,880 --> 01:15:44,720 LARGEST INVESTMENTS APPROXIMATE 1867 01:15:44,720 --> 01:15:46,680 ADDRESSING HEALTH DISPARITIES AT 1868 01:15:46,680 --> 01:15:48,600 THE NIH EVER CUP AND OF COURSE 1869 01:15:48,600 --> 01:15:49,640 IT WAS IN RESPONSE TO THE 1870 01:15:49,640 --> 01:15:52,480 PANDEMIC SO WE UNDERSTAND THAT 1871 01:15:52,480 --> 01:15:54,280 BUT IT STILL IS DAUNTING O 1872 01:15:54,280 --> 01:15:56,280 REFLECT ON WHAT HAS BEEN 1873 01:15:56,280 --> 01:15:59,200 ACCOMPLISHED AND WE HAVE FUNDED 1874 01:15:59,200 --> 01:16:09,720 137 UNIQUE PROJECTS AND AND IT 1875 01:16:13,760 --> 01:16:16,080 WILL BE CRITICAL FOR THE TRIBAL 1876 01:16:16,080 --> 01:16:17,240 REPOSITORY. 1877 01:16:17,240 --> 01:16:19,960 OVER 350,000 UNIQUE PARTICIPANTS 1878 01:16:19,960 --> 01:16:21,160 HAVE BEEN EP ROLLED AND THEIR 1879 01:16:21,160 --> 01:16:23,240 DATA HAVE BEEN SHARED, EXCLUDING 1880 01:16:23,240 --> 01:16:30,240 THE NATIVE POP LAY TIVE THAT HAS 1881 01:16:30,240 --> 01:16:31,520 NOT BEEN SHARED BECAUSE OF 1882 01:16:31,520 --> 01:16:32,920 OBVIOUS TRIBAL GOVERNANCE BUT 1883 01:16:32,920 --> 01:16:35,200 THIS IS JUST AN AMAZING WEALTH 1884 01:16:35,200 --> 01:16:39,960 OF INFORMATION THAT IS AVAILABLE 1885 01:16:39,960 --> 01:16:41,000 FOR NOT ONLY FOR MAIN TAPING IT 1886 01:16:41,000 --> 01:16:43,040 IT BUT FOR ANALYSIS. 1887 01:16:43,040 --> 01:16:46,200 MANY TESTS HAVE BEEN DONE AND 1888 01:16:46,200 --> 01:16:47,400 ABSTRACTIONS FROM ELECTRIC 1889 01:16:47,400 --> 01:16:48,600 TROPIC HEALTH RECORDS, ET 1890 01:16:48,600 --> 01:16:49,080 CETERA. 1891 01:16:49,080 --> 01:16:54,000 AND ON NOVEMBER 29th AMERICAN 1892 01:16:54,000 --> 01:17:00,640 JO JOURNALOF HEALTH SPECIAL SUPS 1893 01:17:00,640 --> 01:17:00,880 PUBLISHED. 1894 01:17:00,880 --> 01:17:05,960 SO THE IDEA OF THE TRIBAL DATA 1895 01:17:05,960 --> 01:17:06,920 REPOSITORY WAS CAME OUT OF THE 1896 01:17:06,920 --> 01:17:10,760 OFFICE OF DATA SCIENCE 1897 01:17:10,760 --> 01:17:15,120 STRATEGIES IN DISCUSSIONS WITH 1898 01:17:15,120 --> 01:17:17,160 THE LEADERSHIP OF RADX, THE 1899 01:17:17,160 --> 01:17:20,480 WHOLE RADX INITIATIVE AND 1900 01:17:20,480 --> 01:17:23,400 RADX-UP AND IT UNDERWENT INPUT 1901 01:17:23,400 --> 01:17:27,320 FROM A FORMAL TRIBAL 1902 01:17:27,320 --> 01:17:29,160 CONSULTATION LAST YEAR. 1903 01:17:29,160 --> 01:17:32,160 THE FUNDING COMES FROM THIS RADX 1904 01:17:32,160 --> 01:17:34,280 APPROPRIATIONS AND NIMHD AGREED 1905 01:17:34,280 --> 01:17:36,080 TO MANAGE THE GRANTS AND SO IT 1906 01:17:36,080 --> 01:17:37,600 WILL BE HOUSED IN OUR IPSOS-REID 1907 01:17:37,600 --> 01:17:42,600 TO UINSTITUTESSO OUR STAFF WILL. 1908 01:17:42,600 --> 01:17:44,960 IT'S REALLY TO FACILITATE AND 1909 01:17:44,960 --> 01:17:46,560 PROCESS WHAT DATA ARE PRODUCED 1910 01:17:46,560 --> 01:17:51,040 FROM THESE 10 PROJECTS TO 1911 01:17:51,040 --> 01:17:53,200 DECIDED WHAT TO DO WITH THE 1912 01:17:53,200 --> 01:17:55,400 UNAFFILIATED AMERICAN INDIAN AND 1913 01:17:55,400 --> 01:18:04,640 ALASKA NATIVE PARTICIPANTS THEY 1914 01:18:04,640 --> 01:18:07,320 WERE SCAREDDERED THERE AND MAKE 1915 01:18:07,320 --> 01:18:08,800 SENSE AND CONTRIBUTE TO THE 1916 01:18:08,800 --> 01:18:11,920 KNOWLEDGE OF COVID-19 AND MAKING 1917 01:18:11,920 --> 01:18:13,160 DECISIONS FOR THEIR COMMUNITIES 1918 01:18:13,160 --> 01:18:15,440 COMMUNITIES NOT ONLY FOR NOW AND 1919 01:18:15,440 --> 01:18:16,960 UNDERSTANDING WHAT HAPPENS NOW 1920 01:18:16,960 --> 01:18:21,120 BUT ALSO PREPARATION FOR FUTURE. 1921 01:18:21,120 --> 01:18:23,480 SO DEVELOPING THIS INDEPENDENT 1922 01:18:23,480 --> 01:18:25,360 RESEARCH DATA REPOSITORY GOVERN 1923 01:18:25,360 --> 01:18:26,920 UNDER PRINCIPLES AND PRACTICES 1924 01:18:26,920 --> 01:18:29,000 OF TRIBAL SOVEREIGNTY FOR DATA 1925 01:18:29,000 --> 01:18:31,240 SHARING, IS REALLY THE PRIMARY 1926 01:18:31,240 --> 01:18:37,640 REASON THAT THIS WAS DONE. 1927 01:18:37,640 --> 01:18:39,200 AND PROVIDE ACCESS TO 1928 01:18:39,200 --> 01:18:40,480 RESEARCHERS AND THEIR 1929 01:18:40,480 --> 01:18:42,120 COLLABORATIVES WHO ARE GENERAL 1930 01:18:42,120 --> 01:18:43,800 RATING AND INTERESTED WORKING 1931 01:18:43,800 --> 01:18:46,880 WITH RADX, AI EX AN DATA. 1932 01:18:46,880 --> 01:18:49,200 SO THE RECIPIENT OF THE AWARD 1933 01:18:49,200 --> 01:18:51,360 WILL WORK WITH AT LEAST WITH 1934 01:18:51,360 --> 01:18:55,600 THOSE 10 PROJECTS AND WHOEVER 1935 01:18:55,600 --> 01:19:00,040 ELSE IS INTERESTED IN WANTS TO 1936 01:19:00,040 --> 01:19:01,720 COLLABORATE ON THIS WILL AND THE 1937 01:19:01,720 --> 01:19:03,440 TRAVEL DATA REPOSITORY WILL BE 1938 01:19:03,440 --> 01:19:08,520 NIH SUPPORTED BUT GOVERNED BY 1939 01:19:08,520 --> 01:19:10,880 THE TRIBAL GOV YOUR WORSHIPPANCE 1940 01:19:10,880 --> 01:19:13,320 AND NOT BY NIH. 1941 01:19:13,320 --> 01:19:15,000 WE DO HAVE THE COR DEPOSITATION 1942 01:19:15,000 --> 01:19:17,840 AND DATA COLLECTION CENTER WHICH 1943 01:19:17,840 --> 01:19:21,920 IS BEEN OUTSTANDING AND THEY ARE 1944 01:19:21,920 --> 01:19:23,320 AWARE OF HAD AND THEY'RE 1945 01:19:23,320 --> 01:19:24,280 KNOWLEDGEABLE ABOUT THIS AND 1946 01:19:24,280 --> 01:19:26,160 THEY'RE STANDING BY WHEN WE MAKE 1947 01:19:26,160 --> 01:19:30,600 THE AWARD TO REALLY SUPPORT AND 1948 01:19:30,600 --> 01:19:32,520 HELP GETTING ESPECIALLY ON THE 1949 01:19:32,520 --> 01:19:33,680 TECHNICAL SIDE, OF COURSE, THEY 1950 01:19:33,680 --> 01:19:36,120 HAVE BEEN COMMUNICATING WITH THE 1951 01:19:36,120 --> 01:19:43,480 10 RADX-UP PROJECTS SO THEY'RE 1952 01:19:43,480 --> 01:19:44,200 AWARE OF THE DIFFERENT 1953 01:19:44,200 --> 01:19:45,360 INDIVIDUAL PROJECTS SO THIS IS A 1954 01:19:45,360 --> 01:19:46,920 WAY TO COORDINATE THAT. 1955 01:19:46,920 --> 01:19:49,200 THE IDEA ALSO TO SUPPORT OTHER 1956 01:19:49,200 --> 01:19:53,720 NATIVE RESEARCHERS AND OTHER 1957 01:19:53,720 --> 01:19:55,240 SCIENTISTS WORKING IN THESE 1958 01:19:55,240 --> 01:19:57,680 COMMUNITIES WILL HAVE FOURTH 1959 01:19:57,680 --> 01:19:59,120 FROM THAT AND WE HOPE WE WILL 1960 01:19:59,120 --> 01:20:01,960 LEARN FROM THIS TO HELP US 1961 01:20:01,960 --> 01:20:03,360 UNDERSTAND MORE ABOUT HOW TO 1962 01:20:03,360 --> 01:20:06,520 RESPOND AND MANAGE ISSUES WITH 1963 01:20:06,520 --> 01:20:07,360 THE PANDEMIC. 1964 01:20:07,360 --> 01:20:09,720 SOMEHOW I DIDN'T GET THE RIGHT 1965 01:20:09,720 --> 01:20:13,240 SET OF SLIDES SO I APOLOGIZE. 1966 01:20:13,240 --> 01:20:14,840 THE TRIBAL DATA REPOSITORY WILL 1967 01:20:14,840 --> 01:20:17,120 BE A NIH SUPPORTED TRIBAL COULD 1968 01:20:17,120 --> 01:20:20,560 HAVE ERNIE POS TORI AND I AM 1969 01:20:20,560 --> 01:20:22,280 CORPORATES AND SUSTAINED TRIBAL 1970 01:20:22,280 --> 01:20:23,920 SOVEREIGNTY PROVIDES RESEARCH 1971 01:20:23,920 --> 01:20:26,080 ACROSS THE PROJECTS AND BETTER 1972 01:20:26,080 --> 01:20:28,400 UNDERSTANDING OF THE IMPACT OF 1973 01:20:28,400 --> 01:20:29,680 COVID-19 AND DATA THAT THE 1974 01:20:29,680 --> 01:20:32,360 TRIBAL HEALTH BOARDS. 1975 01:20:32,360 --> 01:20:42,880 LET ME JUST CHECK THIS IS THE 1976 01:20:57,520 --> 01:21:00,040 RIGHT ONE AND I DON'T KNOW WHAT 1977 01:21:00,040 --> 01:21:00,320 HAPPENED. 1978 01:21:00,320 --> 01:21:00,520 OK. 1979 01:21:00,520 --> 01:21:02,520 LET ME TRY AGAIN. 1980 01:21:02,520 --> 01:21:04,560 MOST OF THOSE FIRST ONES WERE 1981 01:21:04,560 --> 01:21:06,760 NOT DIFFERENT. 1982 01:21:06,760 --> 01:21:17,200 SO -- TAKE MY WORD FOR IT. 1983 01:21:32,200 --> 01:21:34,120 WE HAVE MADE A SELECTION FOR THE 1984 01:21:34,120 --> 01:21:36,200 AWARDEE BUT THE AWARD HASN'T 1985 01:21:36,200 --> 01:21:37,040 BEEN MADE. 1986 01:21:37,040 --> 01:21:40,360 SO, I CAN'T TELL YOU WHO THE 1987 01:21:40,360 --> 01:21:41,400 RECIPIENT IS. 1988 01:21:41,400 --> 01:21:42,960 NOT YET. 1989 01:21:42,960 --> 01:21:45,640 WE HOPE TO BE ABLE TO ANNOUNCE E 1990 01:21:45,640 --> 01:21:47,400 THE AWARD LATER THIS MONTH, AT 1991 01:21:47,400 --> 01:21:49,400 THE LATEST THE BEGINNING OF 1992 01:21:49,400 --> 01:21:49,800 2023. 1993 01:21:49,800 --> 01:21:51,320 THIS ARE ALL THESE DETAILS WITH 1994 01:21:51,320 --> 01:21:52,360 GRANTS MANAGEMENT THAT NEED TO 1995 01:21:52,360 --> 01:21:58,040 BE DISCUSSED. 1996 01:21:58,040 --> 01:22:02,680 WE'RE LOOKING AT THIS A NEW 1997 01:22:02,680 --> 01:22:05,480 PROCESS AND NEW IT'S NEW FOR NIH 1998 01:22:05,480 --> 01:22:07,520 AND TO APPROACH THIS CHALLENGE 1999 01:22:07,520 --> 01:22:09,280 THIS WAY AND IN THE PAST I THINK 2000 01:22:09,280 --> 01:22:12,560 MOSTLY IT HAS BEEN EITHER DONE 2001 01:22:12,560 --> 01:22:15,640 INCORRECTLY OR IGNORED AND OR 2002 01:22:15,640 --> 01:22:19,000 SORT OF SAYING LET'S LET SOME 2003 01:22:19,000 --> 01:22:20,360 ELSE WORRY ABOUT IT KIND OF 2004 01:22:20,360 --> 01:22:22,600 THING AND IT'S A $2 MILLION 2005 01:22:22,600 --> 01:22:26,960 TOTAL COST PER YEAR FOR FOUR 2006 01:22:26,960 --> 01:22:33,800 YEARS AND IT'S MONEY TOLL RADX 2007 01:22:33,800 --> 01:22:37,440 AND ALL THE STAFF TIME INVOLVED 2008 01:22:37,440 --> 01:22:40,160 OF MENTIONED STEP-BY-STEP ADVICE 2009 01:22:40,160 --> 01:22:42,960 AND PARTNERSHIP WITH DAVE WILSON 2010 01:22:42,960 --> 01:22:46,560 AND THE TRIBAL HEALTH RESEARCHEL 2011 01:22:46,560 --> 01:22:48,760 OFFER AND AS WELL AS THE OFFICE 2012 01:22:48,760 --> 01:22:51,560 OF DATA SCIENCE STRATEGIES SO I 2013 01:22:51,560 --> 01:22:52,720 THINK THAT NOT NOTHING WITHOUT 2014 01:22:52,720 --> 01:22:55,000 RISK BUT OF WE'RE VERY EXCITED 2015 01:22:55,000 --> 01:22:57,640 AND NOT BEAT ABOUT WHAT HAD 2016 01:22:57,640 --> 01:22:59,560 REPRESENTS AND WE WILL WORK I AM 2017 01:22:59,560 --> 01:23:03,720 IT TENSELY TO MAKE THIS A 2018 01:23:03,720 --> 01:23:06,040 SUCCESSFUL PROJECT. 2019 01:23:06,040 --> 01:23:08,280 SO LET ME WITCH GEARS AND TALK 2020 01:23:08,280 --> 01:23:09,920 APPROXIMATE THE PRESCRIBE 2021 01:23:09,920 --> 01:23:10,720 EPIDEMIOLOGY CENTERS AND I'LL 2022 01:23:10,720 --> 01:23:12,920 START WITH A FRAMING WITH 2023 01:23:12,920 --> 01:23:14,720 INFORMATION YOU ARE AWARE OF AND 2024 01:23:14,720 --> 01:23:17,560 WHICH IT'S THE CENSUS IN 2020 2025 01:23:17,560 --> 01:23:19,440 COUNTED ALMOST 0 MILLION 2026 01:23:19,440 --> 01:23:20,760 INDIVIDUALS WHO SELF-IDENTIFIED 2027 01:23:20,760 --> 01:23:22,120 AS AMERICAN INDIAN AND ALASKA 2028 01:23:22,120 --> 01:23:25,240 NATIVE EITHER PRIMARILY OR 2029 01:23:25,240 --> 01:23:29,800 EXCLUSIVELY OR IN THE GROUP OF 2030 01:23:29,800 --> 01:23:30,840 MORE THAN ONE RACE AND IT IT 2031 01:23:30,840 --> 01:23:32,360 THERED THE WAY THEY DID THE 2032 01:23:32,360 --> 01:23:34,240 ALGORITHM OF COUNTING PEOPLE WHO 2033 01:23:34,240 --> 01:23:35,440 IDENTIFIED AS MORE THAN ONE RACE 2034 01:23:35,440 --> 01:23:37,160 AND THIS IS IS MOSTLY EFFECTED 2035 01:23:37,160 --> 01:23:41,040 THE LATINO HISPANIC POPULATION 2036 01:23:41,040 --> 01:23:41,960 AND AMERICAN INDIAN ALASKA 2037 01:23:41,960 --> 01:23:43,360 NATIVE AND SO IT'S ALMOST 3% OF 2038 01:23:43,360 --> 01:23:46,200 THE U.S. POPULATION. 2039 01:23:46,200 --> 01:23:48,440 AND THE TRIBAL EPIDEMIOLOGY 2040 01:23:48,440 --> 01:23:49,960 CENTERS ARE ESTABLISHED IN 1996 2041 01:23:49,960 --> 01:23:51,520 AND UNDER THE RE AUTHORIZATION 2042 01:23:51,520 --> 01:23:53,400 OF THE HEALTHCARE IMPROVEMENT 2043 01:23:53,400 --> 01:23:56,560 ACT AND FUNDED BY THE INDIAN 2044 01:23:56,560 --> 01:24:07,040 HEALTH SERVICE AT THE TIME. 2045 01:24:13,200 --> 01:24:14,040 AND MOBILIZATION OF EMERGENCY 2046 01:24:14,040 --> 01:24:16,360 RESPONSE TO PUBLIC-HEALTH 2047 01:24:16,360 --> 01:24:16,600 CRISIS. 2048 01:24:16,600 --> 01:24:19,440 AND HISTORICALLY, MOST OF THE 2049 01:24:19,440 --> 01:24:22,080 SUPPORT HAS BEEN FROM THE INDIAN 2050 01:24:22,080 --> 01:24:23,320 HEALTH SERVICE AND CENTER FOR 2051 01:24:23,320 --> 01:24:24,480 DISEASE CONTROL AND PREVENTION 2052 01:24:24,480 --> 01:24:27,720 AND WITH MUCH OF IT REALLY ON 2053 01:24:27,720 --> 01:24:31,280 THIS CAPACITY BUILDING FROM THE 2054 01:24:31,280 --> 01:24:31,440 CDC. 2055 01:24:31,440 --> 01:24:33,600 THE NATIONAL INSTITUTE OF 2056 01:24:33,600 --> 01:24:34,680 MINORITY HEALTH HEALTH 2057 01:24:34,680 --> 01:24:35,880 DISPARITIES BEGAN PROVIDING 2058 01:24:35,880 --> 01:24:39,000 SUPPORT FROM THE TAX ABOUT 18 2059 01:24:39,000 --> 01:24:41,640 YEARS AGO OR O AND SOMETHING 2060 01:24:41,640 --> 01:24:48,080 AROUND 2004 AND 2005 UNDER THE 2061 01:24:48,080 --> 01:24:51,200 DIRECTOR JOHN RUFFIN AT THE 2062 01:24:51,200 --> 01:24:51,400 TIME. 2063 01:24:51,400 --> 01:24:56,360 THIS IS A MAP AND IT THEY MATCH 2064 01:24:56,360 --> 01:24:58,040 AND THERE ARE 12 TEXT WITHIN 2065 01:24:58,040 --> 01:24:59,120 EACH OF THE ADMINISTRATIVE 2066 01:24:59,120 --> 01:25:03,200 REGIONS WITH THE URBAN HEALTH, 2067 01:25:03,200 --> 01:25:06,040 URBAN INSTITUTE REPRESENTING 2068 01:25:06,040 --> 01:25:08,560 URBAN INDIANS AND SO THE GOALS 2069 01:25:08,560 --> 01:25:11,680 OF THIS TECH RESOURCE CENTER AND 2070 01:25:11,680 --> 01:25:16,880 IT WAS TO PROVIDE A MECHANISM 2071 01:25:16,880 --> 01:25:19,280 WHICH NIMHD WOULD MANAGE AND 2072 01:25:19,280 --> 01:25:21,520 CONTROL THE TRANSFER OF FUNDS. 2073 01:25:21,520 --> 01:25:23,160 ALL OF OUR EVERY YEAR WE'VE BEEN 2074 01:25:23,160 --> 01:25:24,720 DOING THIS WE'VE BEEN 2075 01:25:24,720 --> 01:25:26,000 TRANSFERRING FUNDS TO THE INDIAN 2076 01:25:26,000 --> 01:25:36,520 HEALTH SERVICE AND THAT WAS -- 2077 01:25:49,120 --> 01:25:51,640 TO CONTINUE THE ACTIVITIES AND 2078 01:25:51,640 --> 01:25:54,920 THAT THEY HAVE BEEN SUPPORTED 2079 01:25:54,920 --> 01:25:57,280 FOR THE ADDITIONAL COMPONENTS 2080 01:25:57,280 --> 01:26:00,920 THAT WERE ADDED TO THE U24 WERE 2081 01:26:00,920 --> 01:26:05,520 OPTIONAL TO PROVIDE TECHNICAL 2082 01:26:05,520 --> 01:26:08,200 ASSISTANCE FOR CONSULTATIONS, 2083 01:26:08,200 --> 01:26:09,960 WEBINARS AND WORKSHOPS FOCUSED 2084 01:26:09,960 --> 01:26:14,000 ON BUILDING CAPACITY FOR 2085 01:26:14,000 --> 01:26:17,080 RESEARCH AND DEVELOP, WHETHER 2086 01:26:17,080 --> 01:26:19,440 IT'S MONITORING, SPECIFIC 2087 01:26:19,440 --> 01:26:20,240 CONSULTATIONS AND PARTICULARLY 2088 01:26:20,240 --> 01:26:24,720 WE WANTED TO FOCUS ON EARLY 2089 01:26:24,720 --> 01:26:28,240 STAGE INVESTIGATORS BASED IN THE 2090 01:26:28,240 --> 01:26:31,840 TAX OR ASSOCIAT ASSOCIATE LOOSEH 2091 01:26:31,840 --> 01:26:32,480 THE TAX. 2092 01:26:32,480 --> 01:26:33,760 WHEN WE FIRST DISCUSSED THIS 2093 01:26:33,760 --> 01:26:35,640 WITH THE INDIAN HEALTH SERVICE 2094 01:26:35,640 --> 01:26:39,360 LEADERSHIP THEY RECOMMENDED THAT 2095 01:26:39,360 --> 01:26:43,360 THEY INCLUDE ALL THE TRIBAL 2096 01:26:43,360 --> 01:26:45,200 ORGANIZATION AND WE'LL DEVELOP A 2097 01:26:45,200 --> 01:26:49,280 PROCESSES BY WHICH THAT CAN BE 2098 01:26:49,280 --> 01:26:50,760 DONE AND I KNOW I'VE HAD SOME 2099 01:26:50,760 --> 01:26:53,800 DISCUSSION AND WE'LL IMPLEMENT 2100 01:26:53,800 --> 01:26:57,040 ONE OF THESE AND WE CAN ACT AS A 2101 01:26:57,040 --> 01:27:00,480 FUNNEL FOR INFORMATION ABOUT NIH 2102 01:27:00,480 --> 01:27:03,080 CONDUCT TO OTHER NIH INITIATIVES 2103 01:27:03,080 --> 01:27:10,400 AND PROVIDE AN OPPORTUNITY FOR 2104 01:27:10,400 --> 01:27:11,840 ENOUGH TO SUPPORT WORK AND THE 2105 01:27:11,840 --> 01:27:15,480 TEXT AND OTHER TRIBAL 2106 01:27:15,480 --> 01:27:15,800 ORGANIZATIONS. 2107 01:27:15,800 --> 01:27:17,240 THE AWARD WAS MADE TO THE 2108 01:27:17,240 --> 01:27:19,600 UNIVERSITY OF COLORADO UNDER THE 2109 01:27:19,600 --> 01:27:21,000 PRINCIPLE INVESTIGATORS MANSON 2110 01:27:21,000 --> 01:27:23,440 AND JOAN OWE CON HE WILL AND 2111 01:27:23,440 --> 01:27:25,360 IT'S THE COLORADO RESEARCH 2112 01:27:25,360 --> 01:27:27,120 CENTER FOR EPIDEMIOLOGY CENTERS 2113 01:27:27,120 --> 01:27:31,080 AND THE TOTAL FUNDING IS 2114 01:27:31,080 --> 01:27:31,840 2.286 MILLION IT'S ABOUT ONE AND 2115 01:27:31,840 --> 01:27:35,800 A HALF MILLION NOT QUITE IN 2116 01:27:35,800 --> 01:27:37,800 DIRECT COST AND PER YEAR FOR 2117 01:27:37,800 --> 01:27:38,760 FIVE YEARS. 2118 01:27:38,760 --> 01:27:42,080 AND SO WE'LL HELP FACILITATE THE 2119 01:27:42,080 --> 01:27:45,120 SUPPORT FOR EACH AND CREATION OF 2120 01:27:45,120 --> 01:27:46,880 THIS HUB FOR TECHNICAL 2121 01:27:46,880 --> 01:27:49,160 ASSISTANCE AS WELL AS ALL THIS 2122 01:27:49,160 --> 01:27:52,400 INSTRUCTIONAL MATERIAL OR COURSE 2123 01:27:52,400 --> 01:27:57,400 AND I SEE THIS AS A FIRST STEP 2124 01:27:57,400 --> 01:28:00,640 TO REALLY CREATE A NETWORK AND 2125 01:28:00,640 --> 01:28:03,640 DATA SIGNS AND THE OFFICE OF 2126 01:28:03,640 --> 01:28:04,560 DATA SCIENCE HEARD WE WERE DOING 2127 01:28:04,560 --> 01:28:06,560 THIS AND SAID WE'LL PROVIDE SOME 2128 01:28:06,560 --> 01:28:08,480 EXTRA SUPPORT SO THERE'S NOWHERE 2129 01:28:08,480 --> 01:28:14,200 DATA SCIENCE CAPACITY BUILDING. 2130 01:28:14,200 --> 01:28:15,640 FUL BUT THERE ARE OTHER OPTIONS 2131 01:28:15,640 --> 01:28:17,520 FOR INSTITUTES THAT MAY WANT TO 2132 01:28:17,520 --> 01:28:21,560 DO A PARTICULAR TOPIC FOCUSED ON 2133 01:28:21,560 --> 01:28:22,920 AMERICAN INDIAN AND ALASKA 2134 01:28:22,920 --> 01:28:24,800 NATIVE POPULATION AND THIS COULD 2135 01:28:24,800 --> 01:28:26,480 PROVIDE NOT MONEY TO THE 2136 01:28:26,480 --> 01:28:33,040 RESEARCH CENTER BUT SAY WE HAVE 2137 01:28:33,040 --> 01:28:35,920 RESEARCH ON CARDIOVASCULAR OR 2138 01:28:35,920 --> 01:28:38,480 CANCER OR SUBSTANCE USE AND THEN 2139 01:28:38,480 --> 01:28:40,760 HELP USE THE RESOURCE CENTER AS 2140 01:28:40,760 --> 01:28:43,840 A WAY MAKE THAT HAPPEN AND USE 2141 01:28:43,840 --> 01:28:46,320 THE TAXES AS A CONDUIT OF 2142 01:28:46,320 --> 01:28:47,600 RECIPIENT OR APPLYING FOR GRANTS 2143 01:28:47,600 --> 01:28:51,560 OR COMMUNICATING WITH POTENTIAL 2144 01:28:51,560 --> 01:28:54,040 INVESTIGATORS WITHIN THEIR AREA. 2145 01:28:54,040 --> 01:28:56,360 AND THE NETWORK OF TRIBAL BASED 2146 01:28:56,360 --> 01:28:59,120 ORGANIZATIONS TO CONDUCT 2147 01:28:59,120 --> 01:29:03,080 RESEARCH AND BY NATIVE 2148 01:29:03,080 --> 01:29:04,960 INVESTIGATORS AND IT'S THE 2149 01:29:04,960 --> 01:29:07,120 ULTIMATE VISION OF THIS GROW TO 2150 01:29:07,120 --> 01:29:10,440 AND USE THE LEVERAGE AND THE 2151 01:29:10,440 --> 01:29:11,880 INFRASTRUCTURE THE 25 YEARS 2152 01:29:11,880 --> 01:29:14,000 HISTORY TO BUILD ON THAT AND 2153 01:29:14,000 --> 01:29:17,320 FIND WAYS FOR NIH TO HELP 2154 01:29:17,320 --> 01:29:17,920 SUPPORT IT. 2155 01:29:17,920 --> 01:29:22,360 AS I MENTIONED THIS RESEARCH 2156 01:29:22,360 --> 01:29:23,520 GRANTS THAT COULD COME IN 2157 01:29:23,520 --> 01:29:30,400 SEPARATE AND THEY COULD RESPONSE 2158 01:29:30,400 --> 01:29:32,600 TO URGENT ISSUES AS RESPONSE 2159 01:29:32,600 --> 01:29:33,880 WITH COVID OR CAPACITY BUILDING 2160 01:29:33,880 --> 01:29:36,680 IN ONE OR ANOTHER PARTICULAR 2161 01:29:36,680 --> 01:29:38,440 AREA AND WE HAVE THE EXPERIENCE 2162 01:29:38,440 --> 01:29:39,600 OF WORKING WITH A RESEARCH 2163 01:29:39,600 --> 01:29:42,920 CENTERS FOR MINORITY 2164 01:29:42,920 --> 01:29:43,760 INSTITUTIONS AND THEY FUNCTION 2165 01:29:43,760 --> 01:29:47,000 IN THIS WAY AND OVER THE LAST 2166 01:29:47,000 --> 01:29:48,440 SEVEN OR EIGHT YEARS OF 2167 01:29:48,440 --> 01:29:54,960 TRANSITION TO BECOME MORE LIKE 2168 01:29:54,960 --> 01:30:05,160 THAT SO I THINK SOMETHING THAT 2169 01:30:05,160 --> 01:30:12,160 WILL REFLECT POSSIBILITIES. 2170 01:30:12,160 --> 01:30:13,560 I THINK THAT'S IT FOR MY 2171 01:30:13,560 --> 01:30:13,880 PRESENTATION. 2172 01:30:13,880 --> 01:30:21,080 JUST A REMINDER OF THE VISION ON 2173 01:30:21,080 --> 01:30:22,080 RESEARCH FRAMEWORK OF INDIVIDUAL 2174 01:30:22,080 --> 01:30:23,480 AND INCOMPETENTER PERSONAL 2175 01:30:23,480 --> 01:30:25,120 RESEARCH AND ALSO COMMUNITY AND 2176 01:30:25,120 --> 01:30:27,200 SOCIETAL ON THE DIFFERENT 2177 01:30:27,200 --> 01:30:30,960 DOMAINS IS LISTED INCLUDING 2178 01:30:30,960 --> 01:30:32,360 HEALTH-CARE SYSTEM AS WELL AS 2179 01:30:32,360 --> 01:30:33,640 BIOLOGY, BEHAVIOR AND THE 2180 01:30:33,640 --> 01:30:34,120 ENVIRONMENT. 2181 01:30:34,120 --> 01:30:36,800 SO, I'LL END THERE AND LET ME 2182 01:30:36,800 --> 01:30:38,920 SEE I CAN MAKE THE EXIT'S YEAR 2183 01:30:38,920 --> 01:30:43,600 THAN THE ENTER TRANCE. 2184 01:30:43,600 --> 01:30:53,920 AND STOP SHARING. 2185 01:31:07,240 --> 01:31:09,600 THERE'S BOBBIE SAKI. 2186 01:31:09,600 --> 01:31:11,400 >>MY HAND WILL ALWAYS POP UP AT 2187 01:31:11,400 --> 01:31:21,800 SOME POINT OR ANOTHER. 2188 01:31:25,080 --> 01:31:26,360 I HAD A QUESTION ABOUT THE DATA 2189 01:31:26,360 --> 01:31:26,640 CONCERNS. 2190 01:31:26,640 --> 01:31:28,360 A COUPLE OF MY COLLEAGUES HERE 2191 01:31:28,360 --> 01:31:30,640 IN OKLAHOMA AND OUTSIDE OF 2192 01:31:30,640 --> 01:31:34,600 OKLAHOMA WERE PART OF A AMERICAN 2193 01:31:34,600 --> 01:31:37,840 INDIAN ALASKA SUBCOMMITTEE ON 2194 01:31:37,840 --> 01:31:41,120 RADX-UP PROJECTS AND FOR THE 2195 01:31:41,120 --> 01:31:42,280 DATA THERE WERE QUITE A FEW 2196 01:31:42,280 --> 01:31:44,040 CONCERNS THEY LISTED EARLIER 2197 01:31:44,040 --> 01:31:46,640 THIS YEAR ABOUT THE REPOSITORY 2198 01:31:46,640 --> 01:31:48,280 AND KIND OF THE GOVERNANCE OF IT 2199 01:31:48,280 --> 01:31:49,480 AND THINGS LIKE THAT AND SO I 2200 01:31:49,480 --> 01:31:52,640 WAS WONDERING IF YOU COULD SPEAK 2201 01:31:52,640 --> 01:31:54,440 TO SOME OF THOSE OR IF YOU ARE 2202 01:31:54,440 --> 01:31:57,480 FAMILIAR WITH THOSE CONCERNS 2203 01:31:57,480 --> 01:31:59,080 THAT THEY HAD, AND HOW THOSE 2204 01:31:59,080 --> 01:32:00,440 CONCERNS WERE ADDRESSED BECAUSE 2205 01:32:00,440 --> 01:32:02,880 FROM WHAT I UNDERSTAND THERE WAS 2206 01:32:02,880 --> 01:32:05,080 QUITE A FEW CONCERNS FROM THE 2207 01:32:05,080 --> 01:32:06,800 SUBCOMMITTEE ABOUT HOW THIS DATA 2208 01:32:06,800 --> 01:32:08,320 WAS GOING TO BE GOVERNED AND 2209 01:32:08,320 --> 01:32:12,920 EXCESS AND ET CETERA AND ET 2210 01:32:12,920 --> 01:32:13,160 CETERA. 2211 01:32:13,160 --> 01:32:14,200 THANK YOU. 2212 01:32:14,200 --> 01:32:18,640 >>WELL, I CAN'T SAY THAT I KNOW 2213 01:32:18,640 --> 01:32:20,080 THE DETAILS OF WHAT YOU ARE 2214 01:32:20,080 --> 01:32:21,360 REFERRING TO BECAUSE SO MUCH 2215 01:32:21,360 --> 01:32:27,560 COMES THROUGH THAT I HEAR ABOUT. 2216 01:32:27,560 --> 01:32:29,080 WE KNOW THAT GOING IN THE 2217 01:32:29,080 --> 01:32:30,200 PROJECTS THAT WE WERE FUNDING 2218 01:32:30,200 --> 01:32:36,920 THAT WERE COLLECTING DATA AND 2219 01:32:36,920 --> 01:32:38,120 WORKING IN WOULD NOT SHARE THEIR 2220 01:32:38,120 --> 01:32:39,520 DATA BECAUSE OF TRIBAL 2221 01:32:39,520 --> 01:32:41,080 GOVERNANCE AND WE KNEW THAT SO 2222 01:32:41,080 --> 01:32:44,600 MOST, I THINK MOST IF NOT ALL OF 2223 01:32:44,600 --> 01:32:48,760 THEM, DECLINED TO SHARE THEIR 2224 01:32:48,760 --> 01:32:51,840 DATA AND THERE WERE A LOT OF 2225 01:32:51,840 --> 01:32:53,280 ISSUES RAISED BY DIFFERENT 2226 01:32:53,280 --> 01:32:53,920 RESEARCHERS AND COMMUNITIES 2227 01:32:53,920 --> 01:32:56,200 ABOUT THE USE OF THE COMMON DATA 2228 01:32:56,200 --> 01:32:59,480 ELEMENTS THAT WE ASKED EVERY 2229 01:32:59,480 --> 01:33:00,560 PROJECT TO USE AND IT WAS 2230 01:33:00,560 --> 01:33:03,080 SOMETHING THAT CAME FROM NIH 2231 01:33:03,080 --> 01:33:06,680 LEADERSHIP AND I PARTICIPATED IN 2232 01:33:06,680 --> 01:33:13,520 THAT AND THERE WERE QUESTIONS 2233 01:33:13,520 --> 01:33:15,520 ABOUT OTHER RELATED CONDITIONS 2234 01:33:15,520 --> 01:33:17,960 AS WELL AS COVID-19 SYMPTOMS, 2235 01:33:17,960 --> 01:33:19,600 DID YOU GET TESTED, HAVE YOU 2236 01:33:19,600 --> 01:33:21,760 BEEN DIAGNOSED THAT KIND OF 2237 01:33:21,760 --> 01:33:21,960 THING. 2238 01:33:21,960 --> 01:33:25,760 I THINK THAT'S TO BE EXPECTED. 2239 01:33:25,760 --> 01:33:27,400 I DON'T RECALL THERE WAS A 2240 01:33:27,400 --> 01:33:31,640 SPECIAL ISSUE WITH THE AMERICAN 2241 01:33:31,640 --> 01:33:33,120 INDIAN PROJECTS YES THERE WERE 2242 01:33:33,120 --> 01:33:34,320 CONCERNS FROM THE UP WITH OF THE 2243 01:33:34,320 --> 01:33:36,080 PROJECTS IN OKLAHOMA, ACTUALLY 2244 01:33:36,080 --> 01:33:40,720 AND THAT HAD TO DO, WE MET WITH 2245 01:33:40,720 --> 01:33:41,480 INVESTIGATORS AND THERE WERE 2246 01:33:41,480 --> 01:33:51,200 ISSUES WITH THE POPULATION AND 2247 01:33:51,200 --> 01:33:52,240 SOME PEOPLE SAID WE WOULDN'T DO 2248 01:33:52,240 --> 01:33:54,000 THIS AND YOU CAN'T MAKE US BUT 2249 01:33:54,000 --> 01:33:58,360 IT WASN'T UNIQUE TO THE NATIVE 2250 01:33:58,360 --> 01:33:58,680 INVESTIGATORS. 2251 01:33:58,680 --> 01:34:01,520 AS FAR AS THE DATA REPOS TO BE 2252 01:34:01,520 --> 01:34:04,600 SEE CONCERNED, FARCE I'M 2253 01:34:04,600 --> 01:34:06,560 CONCERNED, AS FAR AS THE FUNDING 2254 01:34:06,560 --> 01:34:07,840 OPPORTUNITY ANNOUNCEMENT 2255 01:34:07,840 --> 01:34:14,720 DESIGNED THIS IS GOVERNED BY THE 2256 01:34:14,720 --> 01:34:15,560 TRIBES, NOT BY NIH. 2257 01:34:15,560 --> 01:34:17,000 WE'RE NOT DEFINING THE DATA AND 2258 01:34:17,000 --> 01:34:17,760 HOW TO DO IT. 2259 01:34:17,760 --> 01:34:21,920 WE'LL BE THERE TO WORK WITH THEM 2260 01:34:21,920 --> 01:34:24,520 AND SUPPORT THEM, ON ALL THE 2261 01:34:24,520 --> 01:34:26,120 DECK CAL THINGS BUT IT IS VERY 2262 01:34:26,120 --> 01:34:30,480 CLEAR AND I THINK THAT'S UP WITH 2263 01:34:30,480 --> 01:34:32,120 OF THE, I WANT TO SAY THE 2264 01:34:32,120 --> 01:34:34,000 INNOVATIVE THINGS OR NEW THINGS 2265 01:34:34,000 --> 01:34:35,560 THAT CORRECT GOOD THINGS ABOUT 2266 01:34:35,560 --> 01:34:40,240 THIS IS IT IS SOMETHING THAT IS 2267 01:34:40,240 --> 01:34:42,040 EXPLICITLY SPELLED OUT TO BE NIH 2268 01:34:42,040 --> 01:34:45,240 SUPPORTED AND TRIBALLY GOVERNED 2269 01:34:45,240 --> 01:34:46,280 REPOSITORY BUT THE PROOF IS IN 2270 01:34:46,280 --> 01:34:49,760 THE PUDDING. 2271 01:34:49,760 --> 01:35:00,280 WE'LL SEE HOWS MAYBE IF A YEAR 2272 01:35:00,720 --> 01:35:02,440 WE'LL CALL ON YOU FOR HELP IF IT 2273 01:35:02,440 --> 01:35:04,400 LOOKS LIKE WE NEED SOME HELP. 2274 01:35:04,400 --> 01:35:05,760 >>THANK YOU FOR THAT. 2275 01:35:05,760 --> 01:35:06,400 AND I KNOW THAT YOU CAN'T 2276 01:35:06,400 --> 01:35:12,080 ANNOUNCE THE AWARDEE BECAUSE IT 2277 01:35:12,080 --> 01:35:13,440 HASN'T BEEN ANNOUNCED YET. 2278 01:35:13,440 --> 01:35:15,080 BUT ARE YOU ABLE TO SAY IF THIS 2279 01:35:15,080 --> 01:35:20,040 AWARD WENT TO A TRIBE OR AN 2280 01:35:20,040 --> 01:35:23,880 ACADEMIC INTEREST OR TRIBAL OR 2281 01:35:23,880 --> 01:35:25,040 ORGANIZATION? 2282 01:35:25,040 --> 01:35:31,520 I. NOT TRYING TO GUESS WHO IT 2283 01:35:31,520 --> 01:35:38,040 IS. 2284 01:35:38,040 --> 01:35:39,360 >>THANK YOU, VERY GOOD 2285 01:35:39,360 --> 01:35:39,600 QUESTIONS. 2286 01:35:39,600 --> 01:35:44,640 >>SO YOU MENTIONED THAT THE 2287 01:35:44,640 --> 01:35:48,000 REPOSITORY SUPPORTS TRIBAL 2288 01:35:48,000 --> 01:35:50,880 SOVEREIGNTY. 2289 01:35:50,880 --> 01:35:51,840 FOLLOWING THIS QUESTION AND THIS 2290 01:35:51,840 --> 01:35:56,320 IS JUST STARTING BUT HOW ARE YOU 2291 01:35:56,320 --> 01:35:59,320 THINKING ABOUT TRIBAL APPROVALS 2292 01:35:59,320 --> 01:36:01,640 AND BEFORE DATA IS ACCESSED AND 2293 01:36:01,640 --> 01:36:01,840 USED? 2294 01:36:01,840 --> 01:36:05,600 AND HOW ARE YOU WORKING THAT 2295 01:36:05,600 --> 01:36:08,120 INTO THE PROCESSES FOR USING THE 2296 01:36:08,120 --> 01:36:11,360 DATA AND SECOND, I'M CURIOUS 2297 01:36:11,360 --> 01:36:13,920 THAT YOU MENTIONED, RADX AND 2298 01:36:13,920 --> 01:36:17,280 THEN THE TEXT BUT HOW IS RADX 2299 01:36:17,280 --> 01:36:21,240 WORKING WITH THE TEXT BECAUSE 2300 01:36:21,240 --> 01:36:29,080 THAT IS A HOW ARE THE TWO 2301 01:36:29,080 --> 01:36:29,480 WORKING TOGETHER? 2302 01:36:29,480 --> 01:36:34,200 >>RIGHT,. 2303 01:36:34,200 --> 01:36:36,080 >>WHO IS GOING TO GET ACCESS TO 2304 01:36:36,080 --> 01:36:37,720 THE DATA AND HOW WILL IT BE 2305 01:36:37,720 --> 01:36:39,000 APPROVED IT'S ALL TO BE DECIDED 2306 01:36:39,000 --> 01:36:43,560 BUT WE'RE NOT GOING TO TELL THE 2307 01:36:43,560 --> 01:36:44,400 TEAM THAT RECEIVES THIS AWARD 2308 01:36:44,400 --> 01:36:54,280 HOW TO DO IT AND YOU CAN SAY 2309 01:36:54,280 --> 01:36:56,160 THEY'RE EXPERIENCED WORK WITH 2310 01:36:56,160 --> 01:37:00,240 TRIBAL ORGANIZATIONS AND THEY 2311 01:37:00,240 --> 01:37:01,760 WILL FOLLOW PROCESSES AND IT'S 2312 01:37:01,760 --> 01:37:04,040 ONE OF THE BETTER, THE GREATER 2313 01:37:04,040 --> 01:37:09,160 STRENGTHS OF THE INVESTIGATION . 2314 01:37:09,160 --> 01:37:09,960 INVESTIGATIVE TEAM. 2315 01:37:09,960 --> 01:37:11,240 WE'LL LEARN FROM THEM AS MUCH AS 2316 01:37:11,240 --> 01:37:12,960 THEY GET ASSISTANCE AND SUPPORT 2317 01:37:12,960 --> 01:37:14,360 FROM US AS WHAT IS NEEDED IN 2318 01:37:14,360 --> 01:37:15,720 TERMS OF STAYING WITHIN THE 2319 01:37:15,720 --> 01:37:16,800 FEDERAL GUIDELINES OR WHATEVER 2320 01:37:16,800 --> 01:37:27,240 IT IS WE NEED TO FOLLOW. 2321 01:37:30,600 --> 01:37:34,280 YOU IF ISSUE THE ON-LINE 2322 01:37:34,280 --> 01:37:37,360 APPLICATION AND THERE'S A GROUP 2323 01:37:37,360 --> 01:37:38,760 THAT DECIDES ONE WAY OR THE 2324 01:37:38,760 --> 01:37:38,960 OTHER. 2325 01:37:38,960 --> 01:37:41,160 YOU HAVE TO BUILD THE TECHNICAL 2326 01:37:41,160 --> 01:37:42,480 THING AND POSITIVE DATA. 2327 01:37:42,480 --> 01:37:52,680 THE SECOND ONE WOULD BE THAT SO 2328 01:37:52,680 --> 01:37:56,280 THE THIRD THING IT WILL TAKE AT 2329 01:37:56,280 --> 01:38:00,160 LEAST A YEAR AND TO GET TO THE 2330 01:38:00,160 --> 01:38:00,360 SPACE. 2331 01:38:00,360 --> 01:38:01,800 OK WE'VE GOT IT IT SET UP AND WE 2332 01:38:01,800 --> 01:38:12,320 CAN START ACCEPTING WE HAVE TO 2333 01:38:20,280 --> 01:38:22,600 BUILD IN AND IT'S 10 PROJECTS 2334 01:38:22,600 --> 01:38:29,160 NOT 100 AND WE HAVE THE TEAM AT 2335 01:38:29,160 --> 01:38:30,680 UC DUKE TO PROVIDE ADVICE AND 2336 01:38:30,680 --> 01:38:32,760 THEY'RE WAITING TO WORK WITH 2337 01:38:32,760 --> 01:38:40,560 WHOEVER THE AWARDEE IS AND SO WE 2338 01:38:40,560 --> 01:38:47,160 WILL LEARN FROM THIS AT NIH. 2339 01:38:47,160 --> 01:38:47,360 MUCH. 2340 01:38:47,360 --> 01:38:49,360 >>AS A FOLLOW-UP, I ASKED WAYS 2341 01:38:49,360 --> 01:38:50,720 WE AVOID ISSUES FROM HAPPENING 2342 01:38:50,720 --> 01:38:54,920 AT GRANTS STAGE AND THE 2343 01:38:54,920 --> 01:38:55,800 SUBMISSION PROCESS STAGE AND SO, 2344 01:38:55,800 --> 01:39:06,320 I WAS WONDERING AND REVIEWING 2345 01:39:11,640 --> 01:39:13,680 THE THE PROPOSAL FOR TRIBAL 2346 01:39:13,680 --> 01:39:13,920 NATIONS. 2347 01:39:13,920 --> 01:39:15,800 >>RIGHT. 2348 01:39:15,800 --> 01:39:17,800 SO, NIH HAS IT'S PROCESSES AND I 2349 01:39:17,800 --> 01:39:23,760 THINK THAT THERE'S ONLY SO MUCH 2350 01:39:23,760 --> 01:39:25,760 YOU CAN DEVIATE FROM THAT AND AS 2351 01:39:25,760 --> 01:39:28,000 WELL AS A WEBINAR SESSION OF 2352 01:39:28,000 --> 01:39:29,560 OPEN WEBINAR WHERE PEOPLE COME 2353 01:39:29,560 --> 01:39:32,520 AND ASK QUESTIONS AND THE THE 2354 01:39:32,520 --> 01:39:34,800 REVIEW IS DONE BY THE CENTER FOR 2355 01:39:34,800 --> 01:39:36,920 SCIENTIFIC REVIEW SO WE WERE NOT 2356 01:39:36,920 --> 01:39:47,480 INVOLVED WITH THAT AND CRITICAL 2357 01:39:47,480 --> 01:39:48,560 REVIEWS AND THEY WERE IN A 2358 01:39:48,560 --> 01:39:49,960 DECISION TO MAKE A FUNDING 2359 01:39:49,960 --> 01:39:50,360 SELECTION. 2360 01:39:50,360 --> 01:39:58,360 I THINK THAT'S AS MUCH AS, NOW, 2361 01:39:58,360 --> 01:40:00,120 IT WAS WRITTEN INTO THE PUBLIC 2362 01:40:00,120 --> 01:40:01,760 DOCUMENT AND YOU SHOULD HAVE 2363 01:40:01,760 --> 01:40:02,360 ACCESS TO. 2364 01:40:02,360 --> 01:40:05,760 THESE WERE ESSENTIAL CRITERIA 2365 01:40:05,760 --> 01:40:08,200 AND IN ORDER TO BE RESPONSIVE 2366 01:40:08,200 --> 01:40:15,040 AND COMPETITIVE FOR THIS 2367 01:40:15,040 --> 01:40:19,400 APPLICATION. 2368 01:40:19,400 --> 01:40:20,880 I WILL SAY, I DIDN'T WANT TO 2369 01:40:20,880 --> 01:40:22,400 MAKE SURE NOT TO IGNORE YOUR 2370 01:40:22,400 --> 01:40:32,920 SECOND QUESTION ON THE TEXT, I 2371 01:40:35,240 --> 01:40:36,680 DON'T KNOW IF THEY'RE PART OF 2372 01:40:36,680 --> 01:40:39,600 THE RADX-UP RECIPIENTS AWARD AND 2373 01:40:39,600 --> 01:40:41,200 IF THEY ARE, THEY'RE NOT PRIMARY 2374 01:40:41,200 --> 01:40:47,640 AND THERE MAY BE -- THEY'RE 2375 01:40:47,640 --> 01:40:48,560 COMPLETELY THEY'RE NOT 2376 01:40:48,560 --> 01:40:51,680 OVERLAPPING IN THAT REGARD SO 2377 01:40:51,680 --> 01:40:53,840 THESE ARE COMPLIMENTARY PROGRAMS 2378 01:40:53,840 --> 01:40:56,080 AND SHOULD NOT BE UP WITH 2379 01:40:56,080 --> 01:41:03,560 EXCLUDING THE OTHER. 2380 01:41:03,560 --> 01:41:05,320 THEY'RE BEEN AROUND AND 2381 01:41:05,320 --> 01:41:06,160 SUPPORTED. 2382 01:41:06,160 --> 01:41:07,480 RADX-UP WITH LIMITED TIME. 2383 01:41:07,480 --> 01:41:14,560 IT'S A FOUR-YEAR APPROPRIATIONS 2384 01:41:14,560 --> 01:41:18,640 AND AND COVID HAS EVOLVED. 2385 01:41:18,640 --> 01:41:19,960 NO ONE THINKS IT'S GOING TO GO 2386 01:41:19,960 --> 01:41:21,640 AWAY, IT WILL ENTER A 2387 01:41:21,640 --> 01:41:25,560 DIFFERENT -- IT'S IN A DIFFERENT 2388 01:41:25,560 --> 01:41:31,680 PHASE ALREADY. 2389 01:41:31,680 --> 01:41:33,200 I DON'T KNOW IF THAT HELPS OR 2390 01:41:33,200 --> 01:41:33,360 NOT. 2391 01:41:33,360 --> 01:41:34,720 I CAN FOLLOW-UP ABOUT THE 2392 01:41:34,720 --> 01:41:37,000 LINKAGE AND I'LL MAKE SURE STAFF 2393 01:41:37,000 --> 01:41:46,240 LET ME KNOW IF THERE IS IN AND 2394 01:41:46,240 --> 01:41:47,920 EVIDENCE WE CAN LET YOU KNOW, MY 2395 01:41:47,920 --> 01:41:52,760 NAME IS ALICIA MUZZO I'M THE 2396 01:41:52,760 --> 01:41:53,440 GREAT PLAINS DELEGATE. 2397 01:41:53,440 --> 01:41:57,120 YOU MAY HAVE MENTIONED IT, SO I 2398 01:41:57,120 --> 01:42:00,240 APOLOGIZE IF YOU DID, WHEN WILL 2399 01:42:00,240 --> 01:42:01,640 THE UNIVERSITY OF COLORADO GET 2400 01:42:01,640 --> 01:42:04,080 FUNDING AND STARTING TO ROLLOUT. 2401 01:42:04,080 --> 01:42:05,600 IT'S SUPER INTERESTING TO ME SO 2402 01:42:05,600 --> 01:42:07,600 I WANT TO BE ON TOP OF IT AND, 2403 01:42:07,600 --> 01:42:14,000 , READY WHEN THEY ARE READY. 2404 01:42:14,000 --> 01:42:16,280 >>LET ME MAKE SURE I 2405 01:42:16,280 --> 01:42:17,640 CLARIFY. 2406 01:42:17,640 --> 01:42:19,200 UNIVERSITY OF TORONTO GOT THE 2407 01:42:19,200 --> 01:42:23,200 TRIBAL EPIDEMIOLOGY RESOURCE 2408 01:42:23,200 --> 01:42:26,600 CENTER GRANT AND NOT THE TRIBAL 2409 01:42:26,600 --> 01:42:28,040 DATA REPOSITORY. 2410 01:42:28,040 --> 01:42:29,040 >>YES, THAT'S CORRECT. 2411 01:42:29,040 --> 01:42:30,440 I WONDERED WHEN THEY GOT THE 2412 01:42:30,440 --> 01:42:33,600 FUNDING FOR THE E EPIDEMIOLOGY. 2413 01:42:33,600 --> 01:42:35,680 >>IT STARTED IN JULY, I WANT TO 2414 01:42:35,680 --> 01:42:35,840 SAY. 2415 01:42:35,840 --> 01:42:37,280 I REMEMBER IT WAS THE MIDDLE OF 2416 01:42:37,280 --> 01:42:39,080 SUMMER WHEN THE AWARD LETTER 2417 01:42:39,080 --> 01:42:40,840 WENT OUT AND SO -- 2418 01:42:40,840 --> 01:42:50,800 >>THANK YOU. 2419 01:42:50,800 --> 01:42:52,360 >>THAT WAS AN EASY ONE. 2420 01:42:52,360 --> 01:42:53,800 ANY FINAL COMMENTS? 2421 01:42:53,800 --> 01:42:56,480 >>AT LEAST I CANNOT SAY JULY. 2422 01:42:56,480 --> 01:43:04,840 SO YOU DO NOT MISS HEAR ME. 2423 01:43:04,840 --> 01:43:06,800 >>ANY FINAL COMMENTS BEFORE WE 2424 01:43:06,800 --> 01:43:13,320 LET Dr. PEREZ-STABLE OFF THE 2425 01:43:13,320 --> 01:43:15,640 HOOK HERE? 2426 01:43:15,640 --> 01:43:17,920 >>THANK YOU SO MUCH FOR JOINING 2427 01:43:17,920 --> 01:43:18,200 US. 2428 01:43:18,200 --> 01:43:20,160 I KNOW YOU'VE BEEN WAITING TO 2429 01:43:20,160 --> 01:43:21,720 SPEAK WITH US AND WE APPRECIATE 2430 01:43:21,720 --> 01:43:28,440 YOU TAKING TIME OUT OF YOUR DAY 2431 01:43:28,440 --> 01:43:31,800 AND WE KEEP THEM UPDATED ON THE 2432 01:43:31,800 --> 01:43:33,680 PROGRESS OF THIS INNOVATIVE. 2433 01:43:33,680 --> 01:43:35,240 CREDIT TABAK MENTIONED WE'RE 2434 01:43:35,240 --> 01:43:37,160 ACROSS THE AGENCY CONTINUALLY 2435 01:43:37,160 --> 01:43:38,440 DEVELOPING AND PUSHING THE 2436 01:43:38,440 --> 01:43:40,360 LIMITS OF INNOVATIVE IDEAS THAT 2437 01:43:40,360 --> 01:43:44,360 HAVE NEVER BEEN THOUGHT OF OR 2438 01:43:44,360 --> 01:43:46,720 EXECUTED BEFORE AND WE'RE DOING 2439 01:43:46,720 --> 01:43:47,000 THAT. 2440 01:43:47,000 --> 01:43:48,880 NOT ALL OF THESE WILL BE 100% 2441 01:43:48,880 --> 01:43:50,320 SUCCESSFUL EX WE WON'T DO IT IT 2442 01:43:50,320 --> 01:43:51,120 RIGHT THE FIRST TIME. 2443 01:43:51,120 --> 01:43:52,320 IT'S A LEARNING PROCESS AND IT'S 2444 01:43:52,320 --> 01:43:55,800 SOMETHING THAT WE SHOULD ALL 2445 01:43:55,800 --> 01:43:56,760 EMBRACE TOGETHER BECAUSE IT'S 2446 01:43:56,760 --> 01:43:58,800 IMPORTANT FOR US TO BUILD THAT 2447 01:43:58,800 --> 01:44:01,000 CRITICAL INFRASTRUCTURE CAPACITY 2448 01:44:01,000 --> 01:44:02,080 FOR TRIBES TO BE ABLE TO NOT 2449 01:44:02,080 --> 01:44:03,640 ONLY CONDUCT AND SUPPORT 2450 01:44:03,640 --> 01:44:05,160 BIOMEDICAL RESEARCH IN THEIR OWN 2451 01:44:05,160 --> 01:44:07,160 COMMUNITIES BUT TO ALSO THINK 2452 01:44:07,160 --> 01:44:08,520 ABOUT THEIR OWN AND CREATE THEIR 2453 01:44:08,520 --> 01:44:13,800 OWN PROJECTS AND IDEAS. 2454 01:44:13,800 --> 01:44:15,120 THANK YOU FOR JOINING US TODAY 2455 01:44:15,120 --> 01:44:15,760 AND WE APPRECIATE IT. 2456 01:44:15,760 --> 01:44:20,040 >>DAVE, I JUST WANT TO MAKE 2457 01:44:20,040 --> 01:44:22,920 SURE THE GROUP REALLY HEARS THAT 2458 01:44:22,920 --> 01:44:24,160 TRIBAL HEALTH RESEARCH OFFICE 2459 01:44:24,160 --> 01:44:26,640 AND SEPARATE AND IN OD BUT THIS 2460 01:44:26,640 --> 01:44:29,600 IS THE NIMHD, ONE OF THE 2461 01:44:29,600 --> 01:44:35,440 PRIORITIES AND OUR COMMITMENT 2462 01:44:35,440 --> 01:44:36,000 ADDRESSING THE HEALTH OF THE 2463 01:44:36,000 --> 01:44:37,000 AMERICAN INDIAN AND ALASKA 2464 01:44:37,000 --> 01:44:38,280 NATIVES TO INTERVENES TO 2465 01:44:38,280 --> 01:44:40,520 DECREASE AND HOPEFULLY ELIMINATE 2466 01:44:40,520 --> 01:44:42,200 SOME OF THE -- MANY OF THE 2467 01:44:42,200 --> 01:44:43,840 DISPARITIES WE OBSERVED, IS 2468 01:44:43,840 --> 01:44:45,840 REALLY A PRIORITY FOR US. 2469 01:44:45,840 --> 01:44:48,880 WE ARE NOT A PHYSIOLOGICAL 2470 01:44:48,880 --> 01:44:52,760 SYSTEM INSTITUTE AND WE COVER 2471 01:44:52,760 --> 01:44:54,720 ALL MINORITIES AND DISPARITIES 2472 01:44:54,720 --> 01:44:58,560 FOR THOSE GROUPS THAT WE HAVE 2473 01:44:58,560 --> 01:45:02,560 IDENTIFIED AND I THINK THIS IS 2474 01:45:02,560 --> 01:45:07,400 NOT SOMETHING THAT WE TAKE AS 2475 01:45:07,400 --> 01:45:08,720 SERIOUS AND IMPORTANT. 2476 01:45:08,720 --> 01:45:12,120 WE'RE HERE TO SUPPORT IT. 2477 01:45:12,120 --> 01:45:12,640 SO THANK YOU. 2478 01:45:12,640 --> 01:45:16,240 >>THANK YOU SO MUCH. 2479 01:45:16,240 --> 01:45:22,480 ALL RIGHT, WE'LL TURN IT BACK 2480 01:45:22,480 --> 01:45:24,280 OVER TO COUNCILMEMBER FRIAS. 2481 01:45:24,280 --> 01:45:25,280 >>OK. 2482 01:45:25,280 --> 01:45:27,320 THANK YOU SO MUCH FOR YOUR 2483 01:45:27,320 --> 01:45:29,000 PRESENTATION AND I DO APPRECIATE 2484 01:45:29,000 --> 01:45:30,960 IT IT. 2485 01:45:30,960 --> 01:45:32,880 NEXT WE HAVE -- I DIDN'T KNOW IT 2486 01:45:32,880 --> 01:45:35,560 WAS COMING OVER TO ME. 2487 01:45:35,560 --> 01:45:40,280 SO, NEXT WE HAVE PRESENTATION BY 2488 01:45:40,280 --> 01:45:43,840 Dr. BURGER AND -- AM I RIGHT? 2489 01:45:43,840 --> 01:45:44,000 NO. 2490 01:45:44,000 --> 01:45:46,640 SO Dr. MUDD. 2491 01:45:46,640 --> 01:45:50,200 >>YES, SHE'S WITH US. 2492 01:45:50,200 --> 01:45:51,640 I'M GOING TO TURN IT OVER TO 2493 01:45:51,640 --> 01:45:52,680 Dr. MUDD. 2494 01:45:52,680 --> 01:45:54,000 >>YES, HELLO. 2495 01:45:54,000 --> 01:45:54,480 THANK YOU. 2496 01:45:54,480 --> 01:46:01,440 GIVE ME A MOMENT TO SHARE MY 2497 01:46:01,440 --> 01:46:06,160 SCREEN. 2498 01:46:06,160 --> 01:46:09,880 CAN YOU SEE MY SLIDES? 2499 01:46:09,880 --> 01:46:11,480 >>YES. 2500 01:46:11,480 --> 01:46:12,600 >>GREAT. 2501 01:46:12,600 --> 01:46:13,400 >>WONDERFUL. 2502 01:46:13,400 --> 01:46:15,040 WELL THANK YOU SO MUCH, GOOD 2503 01:46:15,040 --> 01:46:16,480 AFTERNOON, EVERYONE. 2504 01:46:16,480 --> 01:46:18,080 AND THANK YOU TO THE TRIBAL 2505 01:46:18,080 --> 01:46:22,160 HEALTH RESEARCH OFFICE FOR IN 2506 01:46:22,160 --> 01:46:24,720 INVITING ME TO PRESENT TO YOU 2507 01:46:24,720 --> 01:46:26,760 TODAY ON THE LAUNCH NIH COM ON 2508 01:46:26,760 --> 01:46:28,400 FUND BRIDGE TO ARTIFICIAL 2509 01:46:28,400 --> 01:46:32,400 INTELLIGENCE OR BRIDGE TO AI 2510 01:46:32,400 --> 01:46:32,640 PROGRAM. 2511 01:46:32,640 --> 01:46:34,200 ON BEHALF OF MY PROGRAM 2512 01:46:34,200 --> 01:46:35,520 MANAGEMENT COLLEAGUE I'M HAPPY 2513 01:46:35,520 --> 01:46:40,280 TO PROVIDE AN OVERVIEW OF OUR 2514 01:46:40,280 --> 01:46:44,880 PROGRAM TODAY AND JUST TO SET 2515 01:46:44,880 --> 01:46:46,640 THE STAGE FOR THE BRIDGE TO ADD 2516 01:46:46,640 --> 01:46:47,960 PROGRAM WE ARE IN THE MIDST OF 2517 01:46:47,960 --> 01:46:51,000 AN ARTIFICIAL INTELLIGENCE OR AI 2518 01:46:51,000 --> 01:46:52,680 REVOLUTION AND WHERE AI IS 2519 01:46:52,680 --> 01:46:54,440 HOPEFULLY IMPROVING MANY ASPECTS 2520 01:46:54,440 --> 01:46:55,440 OF DAILY LIVES. 2521 01:46:55,440 --> 01:46:58,000 BUT WHAT ARE THE PROMISE OF AI 2522 01:46:58,000 --> 01:46:59,200 FOR BIO MEDICINE? 2523 01:46:59,200 --> 01:47:01,480 WELL SOME OF THE EARLY HINTS 2524 01:47:01,480 --> 01:47:02,960 INCLUDE NOT IMPROVED PROTEIN 2525 01:47:02,960 --> 01:47:05,280 PREDICTION AND THE BIOLOGY 2526 01:47:05,280 --> 01:47:05,480 REALM. 2527 01:47:05,480 --> 01:47:09,320 AS WELL AS MORE EFFICIENT 2528 01:47:09,320 --> 01:47:10,440 DIAGNOSIS OF DIFFERENT DISORDERS 2529 01:47:10,440 --> 01:47:12,560 AND BRIDGE TO AI IS SEEK TO GO 2530 01:47:12,560 --> 01:47:14,360 BUILD ON THESE SUCCESSES AND 2531 01:47:14,360 --> 01:47:16,720 ENHANCE THE ROLE OF THE 2532 01:47:16,720 --> 01:47:18,120 ARTIFICIAL I AM TELL AGAINST AT 2533 01:47:18,120 --> 01:47:20,000 AN INCLUSIVE, ETHICAL AND TRUST 2534 01:47:20,000 --> 01:47:21,920 WORTHY MANNER. 2535 01:47:21,920 --> 01:47:23,440 SO, JUST TO BRIEFLY MENTION HOW 2536 01:47:23,440 --> 01:47:25,640 WE GOT TO THIS POINT, A FEW 2537 01:47:25,640 --> 01:47:27,320 YEARS AGO, BASED ON THE 2538 01:47:27,320 --> 01:47:28,400 RECOMMENDATIONS OF AN EASTERLY 2539 01:47:28,400 --> 01:47:30,760 YEAR WORKSHOP, THE NIH MANY 2540 01:47:30,760 --> 01:47:32,000 DIRECTOR FORMED A WORKING GROUP 2541 01:47:32,000 --> 01:47:33,800 OF THE ADVISORY COMMITTEES TO 2542 01:47:33,800 --> 01:47:35,880 THE DIRECTOR TO LOOK INTO 2543 01:47:35,880 --> 01:47:37,280 ARTIFICIAL INTELLIGENCE AND 2544 01:47:37,280 --> 01:47:39,160 RELATED COMPUTATIONAL METHODS. 2545 01:47:39,160 --> 01:47:41,160 SOME OF THE RECOMMENDATIONS ARE 2546 01:47:41,160 --> 01:47:43,040 LISTED HERE. 2547 01:47:43,040 --> 01:47:47,560 FIRST, THE NERVES RE NIH HAS A F 2548 01:47:47,560 --> 01:47:49,120 DATASETS AND THEY WILL WORK WELL 2549 01:47:49,120 --> 01:47:52,320 FOR ARTIFICIAL INTELLIGENCE 2550 01:47:52,320 --> 01:47:54,200 ALGORITHMS AND GENERATING FLAB 2551 01:47:54,200 --> 01:47:55,800 SHIP DATASETS READY FOR 2552 01:47:55,800 --> 01:47:59,520 ARTIFICIAL INTELLIGENCE AND 2553 01:47:59,520 --> 01:48:00,960 A.I./ML TECHNIQUES. 2554 01:48:00,960 --> 01:48:02,720 SECONDLY NIH NEEDS TO INCREASE 2555 01:48:02,720 --> 01:48:04,840 EFFORTS TO ESTABLISH CRITERIA 2556 01:48:04,840 --> 01:48:07,480 FOR WHAT MAKES DATASETS AND 2557 01:48:07,480 --> 01:48:08,680 AI/ML READY. 2558 01:48:08,680 --> 01:48:10,800 THIRD, THAT THE USE OF AI NEEDS 2559 01:48:10,800 --> 01:48:13,160 TO BE GUIDED BY ETHICAL 2560 01:48:13,160 --> 01:48:14,720 PRINCIPLES WHEN APPLIED TO 2561 01:48:14,720 --> 01:48:16,000 BUYOLOGY AND MEDICINE AND THAT 2562 01:48:16,000 --> 01:48:26,560 NIH NEEDS TO PROVIDE LEADERSHIP 2563 01:48:27,200 --> 01:48:30,200 AND TO ATTRACT THOSE UNDERSTAND 2564 01:48:30,200 --> 01:48:32,000 AI, DATA SCIENCE AND BIO 2565 01:48:32,000 --> 01:48:35,800 MEDICINE AND NIH SHOULD CONVENE 2566 01:48:35,800 --> 01:48:36,840 CROSS DISCIPLINARY. 2567 01:48:36,840 --> 01:48:39,280 HOW CAN WE FACILITATE THESE AI 2568 01:48:39,280 --> 01:48:41,440 EXPERTS WORKING PRODUCTIVELY 2569 01:48:41,440 --> 01:48:43,680 WITH EYOLOGISTS AND CLINICIANS 2570 01:48:43,680 --> 01:48:48,840 AND SO THE BRIDGE O TO AI COMMN 2571 01:48:48,840 --> 01:48:50,000 FUND WAS INITIATE TODAY ADDRESS 2572 01:48:50,000 --> 01:48:52,000 THESE RECOMMENDATIONS, WE 2573 01:48:52,000 --> 01:48:54,120 ANNOUNCED FUNDING OPPORTUNITIES 2574 01:48:54,120 --> 01:48:56,000 LAST YEAR AND WE MADE AWARDS 2575 01:48:56,000 --> 01:48:57,760 THIS FALL AND ARE JUST NOW 2576 01:48:57,760 --> 01:49:01,800 KICKING OFF OUR CONSORTIUM. 2577 01:49:01,800 --> 01:49:08,800 THAT BRIDGE TO AI IS ONE OF THE 2578 01:49:08,800 --> 01:49:10,440 WORKING GROUPS AND WITH YOU I 2579 01:49:10,440 --> 01:49:15,240 MAY HAVE ALREADY BE TOGETHER 2580 01:49:15,240 --> 01:49:25,760 WORKING WITH THESE AI AT NIH. 2581 01:49:28,000 --> 01:49:29,040 S WE ARE LED BY INSTITUTES AND 2582 01:49:29,040 --> 01:49:31,960 CENTERS LISTED ON THIS SLIDE. 2583 01:49:31,960 --> 01:49:34,000 WE ARE COORDINATED BY THE COMMON 2584 01:49:34,000 --> 01:49:34,200 FUND. 2585 01:49:34,200 --> 01:49:36,240 WE ALSO HAVE THE PARTICIPATION 2586 01:49:36,240 --> 01:49:38,880 OF A LARGE WORKING GROUP. 2587 01:49:38,880 --> 01:49:44,360 WITH CONTRIBUTI COULDN'T OF MANR 2588 01:49:44,360 --> 01:49:45,640 FEDERAL ACTION THAT'S CONTRIBUTE 2589 01:49:45,640 --> 01:49:47,920 TO OUR PROGRAMS. 2590 01:49:47,920 --> 01:49:50,280 SO THIS THE GOAL OF BRIDGE TO 2591 01:49:50,280 --> 01:49:50,480 AI. 2592 01:49:50,480 --> 01:49:53,280 WE ARE LOOKING TO PROPEL BY OWE 2593 01:49:53,280 --> 01:49:55,160 MEDICAL RESEARCH FORWARD BY 2594 01:49:55,160 --> 01:49:57,440 SETTING THE STAGE FOR WIDESPREAD 2595 01:49:57,440 --> 01:49:58,720 ADOPTION OF ARTIFICIAL 2596 01:49:58,720 --> 01:50:00,800 INTELLIGENCE THAT CAN CACKLE 2597 01:50:00,800 --> 01:50:02,960 COMPLEX BIOMEDICAL CHALLENGES 2598 01:50:02,960 --> 01:50:08,200 THAT BEYOND HUMAN I HUMAN INNU . 2599 01:50:08,200 --> 01:50:10,920 IT IT WILL PREPARE AI READY 2600 01:50:10,920 --> 01:50:11,400 DATA. 2601 01:50:11,400 --> 01:50:14,960 THIS INCLU INCLUDES COMPLETE 2602 01:50:14,960 --> 01:50:16,240 BIOMEDICAL AND BEHAVIORAL 2603 01:50:16,240 --> 01:50:17,440 DATASETS THAT ARE FIND ABLE OF 2604 01:50:17,440 --> 01:50:19,680 COURSE ACCESSIBLE AND REUSABLE 2605 01:50:19,680 --> 01:50:20,400 OR FAIR. 2606 01:50:20,400 --> 01:50:22,520 AND CREATING SOFTWARE AND 2607 01:50:22,520 --> 01:50:24,960 STANDARDS TO UNIFY DATA ELEMENTS 2608 01:50:24,960 --> 01:50:26,360 ACROSS DIFFERENT DATA SOURCES 2609 01:50:26,360 --> 01:50:27,800 AND DATA TYPES AND SO THAT THEY 2610 01:50:27,800 --> 01:50:31,920 CAN BE BE EASILY USED BY AI 2611 01:50:31,920 --> 01:50:32,160 SYSTEMS. 2612 01:50:32,160 --> 01:50:33,840 WE ARE ALSO WORKING TO ENSURE 2613 01:50:33,840 --> 01:50:36,720 THAT THE DATA ARE ETHICALLY 2614 01:50:36,720 --> 01:50:37,520 SOURCED. 2615 01:50:37,520 --> 01:50:38,360 MEANING THEY'RE COLLECTED AND 2616 01:50:38,360 --> 01:50:40,160 USED IN AN ETHICAL MANNER AND 2617 01:50:40,160 --> 01:50:42,320 THE DATA ARE ACCURATE, RELIABLE 2618 01:50:42,320 --> 01:50:43,520 AND TRUST WORTHY. 2619 01:50:43,520 --> 01:50:46,400 AND FINALLY WE ARE FOCUSED ON 2620 01:50:46,400 --> 01:50:54,400 PROMOTING DIVERSE TEAMS TO 2621 01:50:54,400 --> 01:50:56,480 REALIZE THE POTENTIAL OF IA. 2622 01:50:56,480 --> 01:50:58,640 TEAM MEMBERS FROM SOCIAL, 2623 01:50:58,640 --> 01:51:00,600 ACADEMIC, INDUSTRY AND TECHNICAL 2624 01:51:00,600 --> 01:51:02,520 OR NON TECHNICAL BACK GROUNDS, 2625 01:51:02,520 --> 01:51:03,920 WILL COLLECT AND WORK WITH DATA 2626 01:51:03,920 --> 01:51:06,000 FOR RESEARCH PARTICIPANTS THAT 2627 01:51:06,000 --> 01:51:08,080 REFLECT THE DIVERSITY OF THE 2628 01:51:08,080 --> 01:51:08,640 UNITED STATES. 2629 01:51:08,640 --> 01:51:10,320 WE ARE ALSO WORKING TO CREATE 2630 01:51:10,320 --> 01:51:12,120 NEW TRAINING MATERIALS AND 2631 01:51:12,120 --> 01:51:14,000 ACTIVITIES TO SUPPORT WORKFORCE 2632 01:51:14,000 --> 01:51:16,000 DEVELOPMENT ACROSS DIFFERENT 2633 01:51:16,000 --> 01:51:16,920 RESEARCH COMMUNITIES. 2634 01:51:16,920 --> 01:51:19,040 SO OVER ALL, WE'RE REALLY HOPING 2635 01:51:19,040 --> 01:51:21,440 TO CREATE A SUSTAINABLE CULTURE 2636 01:51:21,440 --> 01:51:23,840 CHANGE THAT WILL FACILITATE 2637 01:51:23,840 --> 01:51:25,000 ARTIFICIAL INTELLIGENCE FOR 2638 01:51:25,000 --> 01:51:30,400 HEALTH RESEARCH AND DISCOVERY. 2639 01:51:30,400 --> 01:51:31,920 THESE ARE THE THREE PILLARS OF 2640 01:51:31,920 --> 01:51:36,200 OUR PROGRAM, DATA AND PEOPLE AND 2641 01:51:36,200 --> 01:51:46,760 ETH I GUESS WE WANT TO MAKE SURE 2642 01:51:46,760 --> 01:51:49,120 WE'RE ENGAGING A DIVERSE GROUP 2643 01:51:49,120 --> 01:51:54,240 OF PEOPLE NOT ONLY IN THE DATA 2644 01:51:54,240 --> 01:51:55,480 AND THE TEAMS COLLECTING THAT 2645 01:51:55,480 --> 01:52:00,360 DATA AND ETHICS AND WE WANT 2646 01:52:00,360 --> 01:52:01,320 ETHICS IN THERE OF OUR PROGRAM 2647 01:52:01,320 --> 01:52:03,440 TO MAKE SURE THAT WE ARE 2648 01:52:03,440 --> 01:52:04,480 REALLYEL CONSIDERING ALL THE 2649 01:52:04,480 --> 01:52:08,640 ETHICAL CHALLENGES OF THE USE OF 2650 01:52:08,640 --> 01:52:10,600 AI-ML TECHNIQUE FOR BIOMEDICAL 2651 01:52:10,600 --> 01:52:12,200 DISCOVERY AND INCORPORATING 2652 01:52:12,200 --> 01:52:15,840 NECESSARY PROTECTIONS AND SAFE 2653 01:52:15,840 --> 01:52:16,440 GUARDS. 2654 01:52:16,440 --> 01:52:19,440 SO IN THE COP TEXT OF SCIENTIFIC 2655 01:52:19,440 --> 01:52:21,320 DISCOVERY BRIDGE TO AI FOCUSED 2656 01:52:21,320 --> 01:52:24,600 ON THE DATA GENERATION AND 2657 01:52:24,600 --> 01:52:26,600 PREPARATION STAGE AND WE ARE 2658 01:52:26,600 --> 01:52:27,520 SUPPORTING SEVERAL DIFFERENT 2659 01:52:27,520 --> 01:52:30,720 DATA GENERATION PROJECTS EACH 2660 01:52:30,720 --> 01:52:32,040 STIMULATED BY DIFFERENT GRAND 2661 01:52:32,040 --> 01:52:34,280 CHALLENGE AND EACH OF THESE 2662 01:52:34,280 --> 01:52:36,800 PROJECTS INCLUDE THE SIX 2663 01:52:36,800 --> 01:52:39,160 MODULES, THAT YOU SEE ON THIS 2664 01:52:39,160 --> 01:52:40,280 SLIDE, THAT WILL WORK TOGETHER 2665 01:52:40,280 --> 01:52:44,080 TO GENERATE NEW AI/ML READY 2666 01:52:44,080 --> 01:52:44,440 DATASETS. 2667 01:52:44,440 --> 01:52:47,960 THESE DATASETS WILL BE MADE 2668 01:52:47,960 --> 01:52:49,960 PUBLICLY AVAILABLE AND THEY WILL 2669 01:52:49,960 --> 01:52:52,360 HOLD REGULAR DATA JAMBOREE AND 2670 01:52:52,360 --> 01:52:53,520 INVITE STAKEHOLDER COMMUNITIES 2671 01:52:53,520 --> 01:52:55,440 TO COME TOGETHER TO USE THE DATA 2672 01:52:55,440 --> 01:52:58,400 AND TAKE THE NEXT STEPS OF MODEL 2673 01:52:58,400 --> 01:53:00,280 DEVELOPMENT AND TESTING TO 2674 01:53:00,280 --> 01:53:02,440 ENABLE BIOMEDICAL AND BEHAVIORAL 2675 01:53:02,440 --> 01:53:03,320 SCIENCE DISCOVERY. 2676 01:53:03,320 --> 01:53:05,280 I WANT TO FOCUS ON THIS CENTER 2677 01:53:05,280 --> 01:53:07,680 BOX FOR JUST A MOMENT TO TALK 2678 01:53:07,680 --> 01:53:09,520 ABOUT THE SIX DIFFERENT MODULES 2679 01:53:09,520 --> 01:53:11,320 THAT WE REQUIRED FOR EACH OF OUR 2680 01:53:11,320 --> 01:53:21,800 DATA GENERATIONS PROJECTS. 2681 01:53:21,800 --> 01:53:23,640 WE HAVE ENGAGE EXPERTS FOR THEIR 2682 01:53:23,640 --> 01:53:24,840 DATA GENERATION PROJECTS. 2683 01:53:24,840 --> 01:53:35,400 SO FIRST IS THE TEAMING MODULE. 2684 01:53:37,800 --> 01:53:40,680 SECONDLY, THE ETHICAL INQUIRY 2685 01:53:40,680 --> 01:53:43,160 RATHER THAN JUST COMPLIANCE AND 2686 01:53:43,160 --> 01:53:45,240 NEXT THE STANDARDS MODULE AND IT 2687 01:53:45,240 --> 01:53:49,600 IT WILL BE WORKING TO UNIFY DATA 2688 01:53:49,600 --> 01:53:50,800 ATTRIBUTES ACROSS DATA SOURCES 2689 01:53:50,800 --> 01:53:52,760 AND TYPES AND THE TOOLS MODULE 2690 01:53:52,760 --> 01:53:54,880 THAT WILL BUILD AND PROVIDE NOT 2691 01:53:54,880 --> 01:53:57,960 SOFTWARE HARDWARE AND FIRM WARE 2692 01:53:57,960 --> 01:53:59,880 TOOLS AND THEM THE DATA 2693 01:53:59,880 --> 01:54:04,920 ACQUISITION MODULE THAT WOULD 2694 01:54:04,920 --> 01:54:06,240 ACTUALLYEL COLLECT DATA IF 2695 01:54:06,240 --> 01:54:07,640 GENERATE DATASETS BY 2696 01:54:07,640 --> 01:54:08,640 INCORPORATING THE TOOLS 2697 01:54:08,640 --> 01:54:10,480 STANDARDS AND ETHICAL AND TRUST 2698 01:54:10,480 --> 01:54:11,800 WORTHY PRINCIPLES DEVELOPED BY 2699 01:54:11,800 --> 01:54:14,640 THESE OTHER MODULES AND THE 2700 01:54:14,640 --> 01:54:16,520 SKILLS AND WORKFORCE DEVELOPMENT 2701 01:54:16,520 --> 01:54:17,920 MODULE WHICH WILL ENHANCE 2702 01:54:17,920 --> 01:54:20,040 SKILLED DEVELOPMENT AND ATTRACT 2703 01:54:20,040 --> 01:54:22,760 AND DEVELOP A NEW KIND OF INTER 2704 01:54:22,760 --> 01:54:26,480 DISCIPLINE AR HE'S AI AND ML AND 2705 01:54:26,480 --> 01:54:27,600 BEHAVIORAL RESEARCH WORKFORCE. 2706 01:54:27,600 --> 01:54:31,320 I WANT TO HIGHLIGHT THE ETHICS 2707 01:54:31,320 --> 01:54:32,720 COMPONENTS OF BRIDGE TO AI SINCE 2708 01:54:32,720 --> 01:54:34,360 THIS IS A IMPORTANT ASPECT AND 2709 01:54:34,360 --> 01:54:36,160 ONE OF OUR THREE PILLARS. 2710 01:54:36,160 --> 01:54:39,280 AS I SAID, THIS MODULE IS REALLY 2711 01:54:39,280 --> 01:54:40,440 FOCUSED ON INSTILLING A CULTURE 2712 01:54:40,440 --> 01:54:42,640 OF ETHICAL INQUIRY. 2713 01:54:42,640 --> 01:54:44,920 AND THIS IS IMPORTANT BECAUSE WE 2714 01:54:44,920 --> 01:54:47,560 RECOGNIZE THERE ARE POTENTIAL 2715 01:54:47,560 --> 01:54:50,000 HARMS OF ARTIFICIAL INTELLIGENCE 2716 01:54:50,000 --> 01:54:52,000 AND IT RAISES SOCIETAL CONCERNS 2717 01:54:52,000 --> 01:54:53,480 SUCH AS CONSENT TO THE 2718 01:54:53,480 --> 01:54:55,080 COLLECTION AND REUSE OF PERSONAL 2719 01:54:55,080 --> 01:54:56,760 DATA AND THE PROSPECTS THAT 2720 01:54:56,760 --> 01:54:58,520 HUMANS WILL HAVE LESS CONTROL 2721 01:54:58,520 --> 01:55:00,360 OVER HOW THESE TECHNOLOGIES ARE 2722 01:55:00,360 --> 01:55:02,480 DEVELOPED AND IMPLEMENTED. 2723 01:55:02,480 --> 01:55:04,120 SO, WITHOUT AN ETHICALLY ROBUST 2724 01:55:04,120 --> 01:55:06,760 SET OF PRINCIPLES AND PRACTICES, 2725 01:55:06,760 --> 01:55:09,680 THAT ARE GENERALIZABLE AND 2726 01:55:09,680 --> 01:55:12,040 REUSABLE, AI COULD REALLY 2727 01:55:12,040 --> 01:55:13,440 INFRINGE UPON PERSONAL RIGHTS 2728 01:55:13,440 --> 01:55:18,680 AND PERHAPS WIDEN GAPS AND 2729 01:55:18,680 --> 01:55:23,200 FAIRNESS EQUITIES. 2730 01:55:23,200 --> 01:55:25,720 TO IDENTIFY, ASSESS AND ADDRESS 2731 01:55:25,720 --> 01:55:29,320 ETHICAL ISSUES IN CREATING AND 2732 01:55:29,320 --> 01:55:33,120 DISSEMINATING A AYE/ML DATASETS 2733 01:55:33,120 --> 01:55:34,440 AND PROMOTE RESEARCH WITHIN 2734 01:55:34,440 --> 01:55:35,560 THESE COMMUNITIES SO EVERY 2735 01:55:35,560 --> 01:55:37,240 COMPONENT OF BRIDGE TO AI IS 2736 01:55:37,240 --> 01:55:41,400 REQUIRED TO HAVE THIS ETHICS 2737 01:55:41,400 --> 01:55:41,680 COMPONENT. 2738 01:55:41,680 --> 01:55:43,280 EACH PROJECTS WILL IDENTIFY AND 2739 01:55:43,280 --> 01:55:44,920 ADDRESS ETHIC CHALLENGES UNIQUE 2740 01:55:44,920 --> 01:55:46,440 TO THEIR PROJECTS AND WE'LL WORK 2741 01:55:46,440 --> 01:55:48,960 TO IDENTIFY SOME OF THESE CROSS 2742 01:55:48,960 --> 01:55:50,400 CUTTING ISSUES AND DEVELOP BEST 2743 01:55:50,400 --> 01:55:52,160 PRACTICES NOT FOR ADDRESSING 2744 01:55:52,160 --> 01:55:52,520 THEM. 2745 01:55:52,520 --> 01:55:54,960 THIS WILL BE AN ITERATIVE 2746 01:55:54,960 --> 01:55:56,720 PROCESS AS WE BUILD A LEARNING 2747 01:55:56,720 --> 01:55:58,280 COMMUNITY OF ETHICAL AND TRUST 2748 01:55:58,280 --> 01:56:00,400 WORTHY A.I. 2749 01:56:00,400 --> 01:56:07,240 ALL RIGHT, O THIS IS JUST AN SON 2750 01:56:07,240 --> 01:56:07,520 OVERVIEW. 2751 01:56:07,520 --> 01:56:09,000 WE HAVE FOUR DATA GENERATION 2752 01:56:09,000 --> 01:56:09,440 PROJECTS. 2753 01:56:09,440 --> 01:56:11,000 EACH FOCUSED ON A DIFFERENT 2754 01:56:11,000 --> 01:56:12,200 GRAND CHALLENGE PROJECT THAT 2755 01:56:12,200 --> 01:56:14,320 I'LL TALK ABOUT MORE IN A MOMENT 2756 01:56:14,320 --> 01:56:16,240 AND EACH INCLUDING ALL SIX OF 2757 01:56:16,240 --> 01:56:20,240 THOSE MODULES THAT I JUST TALKED 2758 01:56:20,240 --> 01:56:21,000 ABOUT. 2759 01:56:21,000 --> 01:56:22,040 OVERLAYING THESE INDIVIDUAL 2760 01:56:22,040 --> 01:56:23,920 PROJECTS WE HAVE ALREADY FUNDED 2761 01:56:23,920 --> 01:56:26,480 A BRIDGE CENTER WHICH WORKING 2762 01:56:26,480 --> 01:56:28,160 ACROSS THE DIFFERENT PROJECTS TO 2763 01:56:28,160 --> 01:56:29,920 COORDINATE THE ACTIVITIES OF THE 2764 01:56:29,920 --> 01:56:31,880 DIFFERENT MODULES AND MAKE THIS 2765 01:56:31,880 --> 01:56:36,680 INTO A TRUE CONSORTIUM WHERE 2766 01:56:36,680 --> 01:56:42,160 THEY CAN CONTRIBUTE TO BEST 2767 01:56:42,160 --> 01:56:42,440 PRACTICES. 2768 01:56:42,440 --> 01:56:43,240 THOSE WILL WORK ACROSS THE 2769 01:56:43,240 --> 01:56:45,760 PROJECTS TO FACILITATE INTER 2770 01:56:45,760 --> 01:56:47,040 DISCIPLINARY TEAM SCIENCE AND 2771 01:56:47,040 --> 01:56:48,840 INTEGRATE THE ACTIVITIES, 2772 01:56:48,840 --> 01:56:50,200 KNOWLEDGE, AND PRACTICES FROM 2773 01:56:50,200 --> 01:56:51,480 ACROSS THE DIFFERENT DATA 2774 01:56:51,480 --> 01:56:53,160 GENERATION PROJECTS AND 2775 01:56:53,160 --> 01:56:54,440 DISSEMINATE THOSE PRODUCTS AS 2776 01:56:54,440 --> 01:56:57,840 RESOURCES TO THE CONSORTIUM AND 2777 01:56:57,840 --> 01:56:59,040 STAKEHOLDER COMMUNITIES. 2778 01:56:59,040 --> 01:57:00,080 THEY WILL ALSO EVALUATE THE 2779 01:57:00,080 --> 01:57:02,480 BRIDGE TO AI PROGRAM AND THE 2780 01:57:02,480 --> 01:57:03,520 DEVELOPED PRODUCTS WITH INPUT 2781 01:57:03,520 --> 01:57:05,160 FROM EXTERNAL STAKEHOLDERS ON A 2782 01:57:05,160 --> 01:57:06,320 REGULAR BASIS. 2783 01:57:06,320 --> 01:57:09,160 AND OUR OVER ALL PURPOSE, IS TO 2784 01:57:09,160 --> 01:57:10,360 DEVELOP CROSS-CUTTING BEST 2785 01:57:10,360 --> 01:57:13,160 PRACTICES TO ENHANCE THE USE OF 2786 01:57:13,160 --> 01:57:14,960 AI/ML METHODS TO ADDRESS 2787 01:57:14,960 --> 01:57:16,720 BIOMEDICAL AND BEHAVIORAL 2788 01:57:16,720 --> 01:57:18,960 RESEARCH GRANT CHALLENGES. 2789 01:57:18,960 --> 01:57:20,920 SO, AS YOU CAN TELL FROM OUR 2790 01:57:20,920 --> 01:57:22,680 OVER ALL THE STRUCTURE, THIS 2791 01:57:22,680 --> 01:57:25,160 PROGRAM REALLY REQUIRES A BROAD 2792 01:57:25,160 --> 01:57:28,440 ARRAY OF SCIENTIFIC EXPERT TEASE 2793 01:57:28,440 --> 01:57:29,760 AS WELL AS INDIVIDUALS FROM 2794 01:57:29,760 --> 01:57:31,920 DIVERSE BACK GROUNDS TO COME 2795 01:57:31,920 --> 01:57:32,200 TOGETHER. 2796 01:57:32,200 --> 01:57:34,720 AND IN FACT, WE REQUIRED THAT 2797 01:57:34,720 --> 01:57:37,480 EVERY COMPONENT OF BRIDGE TO AI 2798 01:57:37,480 --> 01:57:39,160 INCLUDESSED A PLAN FOR ENHANCING 2799 01:57:39,160 --> 01:57:44,320 DIVERSE PERSPECTIVES. 2800 01:57:44,320 --> 01:57:45,520 SO INDIVIDUALS WITH DIVERSE 2801 01:57:45,520 --> 01:57:46,760 BACKGROUNDS AND LIFE EXPERIENCES 2802 01:57:46,760 --> 01:57:48,080 AND TRAINING IN DIFFERENT 2803 01:57:48,080 --> 01:57:48,680 DISCIPLINES, WILL BRING 2804 01:57:48,680 --> 01:57:50,120 DIFFERENT PERSPECTIVES AND 2805 01:57:50,120 --> 01:57:53,720 CREATIVITY TO ADDRESS THE 2806 01:57:53,720 --> 01:57:55,040 DIFFERENT SCIENTIFIC PROBLEMS WE 2807 01:57:55,040 --> 01:57:56,480 ENCOUNTER IN BRIDGE TO AI AND 2808 01:57:56,480 --> 01:57:59,000 THIS DIVERSITY WILL INCREASE THE 2809 01:57:59,000 --> 01:58:01,120 LIKELIHOOD THAT WE WILL SURFACE 2810 01:58:01,120 --> 01:58:02,320 CRITICAL, ETHICAL CONSIDERATIONS 2811 01:58:02,320 --> 01:58:04,920 THAT NEED TO BE ADDRESSED ACROSS 2812 01:58:04,920 --> 01:58:08,800 ALL ASPECTS OF THE PROGRAMMING. 2813 01:58:08,800 --> 01:58:11,520 SO, EVERY WARRANT HAS THIS PLAN 2814 01:58:11,520 --> 01:58:12,680 FOR ENHANCING DIVERSE 2815 01:58:12,680 --> 01:58:14,240 PERSPECTIVES THAT PROVIDES A 2816 01:58:14,240 --> 01:58:17,720 HOLISTIC VIEW OF HOW EP IT'S VID 2817 01:58:17,720 --> 01:58:19,600 AND SUPPORTED THROUGHOUT THE 2818 01:58:19,600 --> 01:58:21,560 PROJECT AND THIS IS JUST SOME OF 2819 01:58:21,560 --> 01:58:24,720 THE EXAMPLES ELEMENTS THAT EACH 2820 01:58:24,720 --> 01:58:26,600 OF THESE INCLUDE. 2821 01:58:26,600 --> 01:58:29,000 BY REQUIRING THE PLAN FOR 2822 01:58:29,000 --> 01:58:30,440 ENHANCING DIVERSE PERSPECTIVES 2823 01:58:30,440 --> 01:58:35,040 AND WE HOPE TO INSTILL A CULTURE 2824 01:58:35,040 --> 01:58:37,040 CHANGE WITHIN BRIDGE TO AI AND 2825 01:58:37,040 --> 01:58:38,720 ENHANCE DIVERSE PERSPECTIVE OF A 2826 01:58:38,720 --> 01:58:41,880 PART OF THE RESEARCH AND RIGHT 2827 01:58:41,880 --> 01:58:43,720 SEARCH TEAM. 2828 01:58:43,720 --> 01:58:45,720 SO THAT WE CAN PROVIDE 2829 01:58:45,720 --> 01:58:47,640 IDENTIFYING SOLUTIONS AND 2830 01:58:47,640 --> 01:58:50,920 COMBATING AGAINST BIASES AND 2831 01:58:50,920 --> 01:58:52,200 SUCH THAT WE'LL BE MORE 2832 01:58:52,200 --> 01:58:54,560 EFFECTIVE WITH OUR OVER ALL 2833 01:58:54,560 --> 01:58:58,400 OUTCOMES OF THE CONSORTIUM. 2834 01:58:58,400 --> 01:59:00,000 SO, NOW A FEW DETAILS ABOUT THE 2835 01:59:00,000 --> 01:59:01,640 AWARDS THAT WE'VE MADE AND WE 2836 01:59:01,640 --> 01:59:04,600 HAVE FUNDED THE BRIDGE CENTER 2837 01:59:04,600 --> 01:59:05,880 OUT OF THREE DIFFERENT 2838 01:59:05,880 --> 01:59:09,080 APPLICATIONS AND EACH INCLUDING 2839 01:59:09,080 --> 01:59:10,720 TWO DISTINCT COURSE, ADMIN AND 2840 01:59:10,720 --> 01:59:12,040 ETHICS, STANDARDS AND TEAMING 2841 01:59:12,040 --> 01:59:13,600 AND SCHOOLS AND TILLS AND 2842 01:59:13,600 --> 01:59:15,000 WORKFORCE DEVELOPMENT AND AS I 2843 01:59:15,000 --> 01:59:17,920 SAID WE FUNDED FOUR CAN I DATA 2844 01:59:17,920 --> 01:59:19,480 GENERATION PROJECTS AND OVER THE 2845 01:59:19,480 --> 01:59:21,360 NEXT FOUR SLIDES I WILL GIVE A 2846 01:59:21,360 --> 01:59:25,080 SNAPSHOT OF EACH OF THESE. 2847 01:59:25,080 --> 01:59:27,960 THE FIRST IS EXPANDING AI/ML IN 2848 01:59:27,960 --> 01:59:28,640 CLINICAL CARE. 2849 01:59:28,640 --> 01:59:30,880 THIS PROJECTS SEEKS TO CREATE A 2850 01:59:30,880 --> 01:59:34,680 DATASET OF 100,000 PATIENTS FROM 2851 01:59:34,680 --> 01:59:36,480 14 DIFFERENT INTENSIVE CARE UNIT 2852 01:59:36,480 --> 01:59:38,280 SITES ACROSS THE UNITED STATES. 2853 01:59:38,280 --> 01:59:40,120 SO IN THE ICU, PATIENTS ARE 2854 01:59:40,120 --> 01:59:41,840 HOOKED UP TO MULTIPLE MONITORS 2855 01:59:41,840 --> 01:59:44,600 THAT PROVIDES MUCH CONSTANT DATA 2856 01:59:44,600 --> 01:59:46,880 STREAMS ABOUT HEART RATE, 2857 01:59:46,880 --> 01:59:47,840 RESPIRATORY RATE, BLOOD PRESSURE 2858 01:59:47,840 --> 01:59:50,080 AND ET CETERA AND EXCEEDING 2859 01:59:50,080 --> 01:59:56,520 LEVELS OF ANY OF THESE MONITORS 2860 01:59:56,520 --> 02:00:07,160 WILL SET O OF THIS PROJECT IS 2861 02:00:21,640 --> 02:00:23,080 WORKING TOWARDS THAT END. 2862 02:00:23,080 --> 02:00:25,760 OUR NEXT PROJECT IS MORE 2863 02:00:25,760 --> 02:00:27,160 BIOLOGICAL AND RELATES TO 2864 02:00:27,160 --> 02:00:28,120 FUNCTIONAL GENOMICS. 2865 02:00:28,120 --> 02:00:32,160 AND THIS WILL MAP THE SPATIO 2866 02:00:32,160 --> 02:00:33,680 TEMPORAL ARCHITECTURE OF HUMAN 2867 02:00:33,680 --> 02:00:35,120 CELLS AND USE THE MAPS TO 2868 02:00:35,120 --> 02:00:36,040 UNDERSTAND THE CONNECTIONS 2869 02:00:36,040 --> 02:00:38,880 BETWEEN GENOTYPES AND 2870 02:00:38,880 --> 02:00:39,280 PHENOTYPES. 2871 02:00:39,280 --> 02:00:41,400 WHILE IN BIOLOGY, GENOTYPE 2872 02:00:41,400 --> 02:00:43,800 TRANSLATES TO PHENOTYPE. 2873 02:00:43,800 --> 02:00:45,680 WE DON'T KNOW MUCH BEEN THAT 2874 02:00:45,680 --> 02:00:45,920 PROCESS. 2875 02:00:45,920 --> 02:00:47,920 WE SEE DO KNOW IN BIOLOGY THAT 2876 02:00:47,920 --> 02:00:49,440 STRUCTURE TERMS FUNCTION SO IF 2877 02:00:49,440 --> 02:00:53,680 WE CAN USE THE STRUCTURALLAL 2878 02:00:53,680 --> 02:00:55,840 INFORMATION OF THE SELL WE CAN 2879 02:00:55,840 --> 02:00:57,040 ILLUMINATE THE CONNECTION THIS 2880 02:00:57,040 --> 02:01:02,400 TEAM WILL PROVIDE THREE MAPPING 2881 02:01:02,400 --> 02:01:04,080 APPROACHES AND THEY'LL CREATE A 2882 02:01:04,080 --> 02:01:05,720 LIBRARY OF LARGE-SCALE MAPS OF 2883 02:01:05,720 --> 02:01:07,520 CELLULAR STRUCTURE AND FUNCTION 2884 02:01:07,520 --> 02:01:11,640 WITHIN VARIOUS DISEASE CONTEXTS. 2885 02:01:11,640 --> 02:01:17,720 OUR NEXT PROJECT IS ON THE TOPIC 2886 02:01:17,720 --> 02:01:19,200 OF -- IF PATHOGENESIS IS IS 2887 02:01:19,200 --> 02:01:21,960 TRYING TO UNDERSTAND HOW DISEASE 2888 02:01:21,960 --> 02:01:23,920 AGAINST AND PROGRESSES THEN THIS 2889 02:01:23,920 --> 02:01:25,040 IS THE REVERSE. 2890 02:01:25,040 --> 02:01:26,440 TRYING TO UNDERSTAND HOW TO 2891 02:01:26,440 --> 02:01:30,720 REGAIN A HEALTHIER STATE OF AND 2892 02:01:30,720 --> 02:01:35,000 SO THIS TEAM HAS A TEMPORAL 2893 02:01:35,000 --> 02:01:39,120 ATLAS OF SALUTEOGENESIS AND 2894 02:01:39,120 --> 02:01:40,680 TYPE-2 DIABETES AS THEIR MODEL 2895 02:01:40,680 --> 02:01:41,240 DISEASE. 2896 02:01:41,240 --> 02:01:42,800 TYPE II DIABETES HAS SEVERAL 2897 02:01:42,800 --> 02:01:44,560 DIFFERENT LEVELS OF PROGRESSION 2898 02:01:44,560 --> 02:01:47,600 WITH A PRE DIABETIC STATE. 2899 02:01:47,600 --> 02:01:49,360 PERHAPS WE CAN USE DATA FROM 2900 02:01:49,360 --> 02:01:51,440 THIS PROJECT TO UNDERSTAND AMONG 2901 02:01:51,440 --> 02:01:53,920 PEOPLE WHO ARE PRE DIABETIC, CAN 2902 02:01:53,920 --> 02:01:56,080 WE PREDICT WHO IS GOING TO GO ON 2903 02:01:56,080 --> 02:01:58,360 TO DEVELOP FULL-BLOWN DIABETES 2904 02:01:58,360 --> 02:01:58,920 OR NOT. 2905 02:01:58,920 --> 02:02:00,280 OR FOR THOSE WHO ARE LATER 2906 02:02:00,280 --> 02:02:02,800 STAGES OF THE DISEASE, CAN WE 2907 02:02:02,800 --> 02:02:04,520 PREDICT THOSE WHO MAY BE ABLE TO 2908 02:02:04,520 --> 02:02:07,160 RETURN TO HEALTH AND RETURN TO 2909 02:02:07,160 --> 02:02:09,840 BEING PRE DIABETIC. 2910 02:02:09,840 --> 02:02:12,280 ONE UNIQUE ASPECT OF THIS 2911 02:02:12,280 --> 02:02:17,600 PROJECT IS THE TEAM MEMBERS 2912 02:02:17,600 --> 02:02:19,400 INCLUDE INDIVIDUALS FROM THE 2913 02:02:19,400 --> 02:02:21,200 DATA BANK CONSORTIUM AND WE'RE 2914 02:02:21,200 --> 02:02:22,840 WORKING WITH THEM ON WORKING ON 2915 02:02:22,840 --> 02:02:24,440 A NATIVE AMERICAN PARTNERSHIP 2916 02:02:24,440 --> 02:02:26,520 THROUGH TRIBAL CONSULTATION AND 2917 02:02:26,520 --> 02:02:29,440 WE'RE HOPEFUL TO GET STARTED ON 2918 02:02:29,440 --> 02:02:32,120 THAT PROCESS IN THE NEW YEAR. 2919 02:02:32,120 --> 02:02:37,960 AND THEN, FINALLY OUR FOURTH 2920 02:02:37,960 --> 02:02:39,520 PROJECT IT'S USING VOICE AS A 2921 02:02:39,520 --> 02:02:41,640 BIOMEDICAL MARKER FOR 2922 02:02:41,640 --> 02:02:43,160 RESPIRATORY DISORDERS, SLEEP 2923 02:02:43,160 --> 02:02:44,840 APNEA, MENTAL HEALTH AND 2924 02:02:44,840 --> 02:02:45,680 NEUROLOGICAL DISORDERS. 2925 02:02:45,680 --> 02:02:51,360 THEY'LL CREATING AND ANELLIZING 2926 02:02:51,360 --> 02:02:53,640 THOSE HOPE TO IDENTIFY BIOMARKER 2927 02:02:53,640 --> 02:02:55,000 SIGNATURES FROM THE SOUND WAVES 2928 02:02:55,000 --> 02:02:56,960 AND SO WE'RE ALL FAMILIAR WITH 2929 02:02:56,960 --> 02:02:58,160 THE SITUATION WHERE YOU TALKED 2930 02:02:58,160 --> 02:02:59,760 TO SOMEONE AND THEIR VOICE IS IN 2931 02:02:59,760 --> 02:03:01,640 THE BASEMENT AND YOU SAY OH, YOU 2932 02:03:01,640 --> 02:03:03,920 MUST HAVE A COLD, WELL, PERHAPS 2933 02:03:03,920 --> 02:03:06,200 THE VOICE HOLDS OTHER INDICATORS 2934 02:03:06,200 --> 02:03:07,680 OF HEALTH STATUS AS WELL AND 2935 02:03:07,680 --> 02:03:10,360 THIS PROJECT CERTAINLY HAS A LOT 2936 02:03:10,360 --> 02:03:12,040 OF TECHNICAL CHALLENGES AND 2937 02:03:12,040 --> 02:03:16,600 ETHICAL DILEMMAS INCLUDING VOICE 2938 02:03:16,600 --> 02:03:16,840 HACKING. 2939 02:03:16,840 --> 02:03:18,600 SO EACH OF THESE PROJECTS HAS 2940 02:03:18,600 --> 02:03:24,160 UNIQUE POPULATIONS AND DATA AND 2941 02:03:24,160 --> 02:03:26,400 AND WE'RE WORKING TO SEE HOW 2942 02:03:26,400 --> 02:03:28,200 THEY CAN COLLABORATE TOGETHER TO 2943 02:03:28,200 --> 02:03:29,880 FULFILL THE GOALS TO BRIDGE TO 2944 02:03:29,880 --> 02:03:31,880 AI AND SELECT FLAGSHIP DATA THAT 2945 02:03:31,880 --> 02:03:34,040 IS ETHICALLY SOURCED AND READY 2946 02:03:34,040 --> 02:03:36,440 FOR AI/ML ANALYSIS AND 2947 02:03:36,440 --> 02:03:38,320 DEVELOPING BEST PRACTICES FOR 2948 02:03:38,320 --> 02:03:48,880 DOING THIS WORK ETHICALLY WE'RE 2949 02:04:01,000 --> 02:04:02,920 WORKING TONE ABLE COLLABORATIONS 2950 02:04:02,920 --> 02:04:04,440 AND CONNECTIONS WITH AIM AHEAD 2951 02:04:04,440 --> 02:04:05,720 AND OTHER EFFORTS ACROSS NIH AS 2952 02:04:05,720 --> 02:04:08,240 WELL SO FOR EXAMPLE, TRYING TO 2953 02:04:08,240 --> 02:04:09,560 CROSS POLLENATE SKILLS AND 2954 02:04:09,560 --> 02:04:13,640 WORKFORCE DEVELOPMENT ACTIVITIES 2955 02:04:13,640 --> 02:04:24,160 AND PROMOTE I APPRECIATE YOUR 2956 02:04:24,480 --> 02:04:26,160 THOUGHTS AND HOW WE CAN ENGAGE 2957 02:04:26,160 --> 02:04:29,680 TRIBAL PARTNERS WITHIN BRIDGE TO 2958 02:04:29,680 --> 02:04:30,040 AI. 2959 02:04:30,040 --> 02:04:32,480 SO IN ORDER TO LEARN MORE, YOU 2960 02:04:32,480 --> 02:04:34,840 CAN GO TO OUR WEBSITE AND YOU 2961 02:04:34,840 --> 02:04:37,000 CAN SIGN UP FOR OUR LIST SERVE 2962 02:04:37,000 --> 02:04:39,680 AND ALSO E-MAIL US AND I THINK 2963 02:04:39,680 --> 02:04:41,680 I'LL STOP THERE AND STOP SHARING 2964 02:04:41,680 --> 02:04:46,400 MY SCREEN SO WE CAN ENTER INTO 2965 02:04:46,400 --> 02:04:46,760 DISCUSSION. 2966 02:04:46,760 --> 02:04:48,440 THERE IT IS. 2967 02:04:48,440 --> 02:04:48,600 OK. 2968 02:04:48,600 --> 02:04:51,520 THANK YOU VERY MUCH. 2969 02:04:51,520 --> 02:04:55,560 >>THANK YOU, Dr. MUDD FOR 2970 02:04:55,560 --> 02:04:56,720 YOUR PRESENTATION AND ALLOWING 2971 02:04:56,720 --> 02:04:58,680 TIME FOR SOME DISCUSSION AND 2972 02:04:58,680 --> 02:04:59,040 QUESTIONS. 2973 02:04:59,040 --> 02:05:05,200 SO, I'LL TURN IT OVER TO SEE IF 2974 02:05:05,200 --> 02:05:07,880 WE HAVE ANY QUESTIONS. 2975 02:05:07,880 --> 02:05:09,600 LET ME CHANGE MY GALLERY SO I 2976 02:05:09,600 --> 02:05:20,120 CAN SEE IF WE HAVE HANDS RAISED. 2977 02:05:34,520 --> 02:05:37,560 >>THANK YOU COUNCILWOMAN. 2978 02:05:37,560 --> 02:05:38,320 AT THIS FOR THAT PRESENTATION. 2979 02:05:38,320 --> 02:05:40,000 MY HEAD IS KIND OF SPINNING. 2980 02:05:40,000 --> 02:05:43,240 YOU KNOW, BECAUSE THIS IS, YOU 2981 02:05:43,240 --> 02:05:46,080 KNOW, WAY OVER MY HEAD AT THIS 2982 02:05:46,080 --> 02:05:47,640 POINT AND I'M STILL STRUGGLING 2983 02:05:47,640 --> 02:05:49,920 WITH SOME OF THE LARGE DATASETS 2984 02:05:49,920 --> 02:05:51,480 THAT NIH IS DEVELOPING AND 2985 02:05:51,480 --> 02:05:55,320 THINGS LIKE THIS AND TO THROW AI 2986 02:05:55,320 --> 02:05:56,760 AND MACHINE LEARNING INTO IT 2987 02:05:56,760 --> 02:05:57,600 COMPLICATES THINGS FOR ME 2988 02:05:57,600 --> 02:06:01,520 BECAUSE I'M NOT REALLY VERY WELL 2989 02:06:01,520 --> 02:06:04,120 EDUCATED AND AND I APOLOGIZE AND 2990 02:06:04,120 --> 02:06:08,000 QUESTIONS AND DON'T MAKE MUCH 2991 02:06:08,000 --> 02:06:10,480 SENSE AND REGARDING TRIBAL 2992 02:06:10,480 --> 02:06:11,760 CONSULTATION AND I KNOW YOU ARE 2993 02:06:11,760 --> 02:06:13,520 ENTERING INTO THAT RIGHT NOW AND 2994 02:06:13,520 --> 02:06:16,000 I THINK THERE'S GOING TO BE A 2995 02:06:16,000 --> 02:06:17,320 HUGE EDUCATION PIECE THAT WILL 2996 02:06:17,320 --> 02:06:19,880 HAVE TO GO TO BEFORE YOU CAN DO 2997 02:06:19,880 --> 02:06:21,280 TRIBAL CONSULTATION BECAUSE YOU 2998 02:06:21,280 --> 02:06:22,960 KNOW, I JUST DON'T KNOWS THAT 2999 02:06:22,960 --> 02:06:25,440 THAT KNOWLEDGE IS COMMONLY THERE 3000 02:06:25,440 --> 02:06:28,760 AND EVEN AMONG TECHNICAL 3001 02:06:28,760 --> 02:06:30,880 ADVISERS AND CERTAINLY NOT 3002 02:06:30,880 --> 02:06:32,560 AMONGST ALL TRIBAL LEADERS AND 3003 02:06:32,560 --> 02:06:34,840 SO, I DON'T KNOW HOW THAT IS 3004 02:06:34,840 --> 02:06:37,880 GOING TO HAPPEN AND I THINK THAT 3005 02:06:37,880 --> 02:06:39,640 PROCESS, YOU KNOW, IS GOING TO 3006 02:06:39,640 --> 02:06:41,160 REALLY TAKE SOME TIME. 3007 02:06:41,160 --> 02:06:45,040 I THINK TO MAKE SURE THAT PEOPLE 3008 02:06:45,040 --> 02:06:47,200 REALLY UNDERSTAND WHAT THIS 3009 02:06:47,200 --> 02:06:47,480 MEANS. 3010 02:06:47,480 --> 02:06:49,360 I GRASPED A LITTLE BIT OF IT. 3011 02:06:49,360 --> 02:06:53,360 I'M AN OLD ICU NURSE SO SOME YU 3012 02:06:53,360 --> 02:06:54,760 TALKED ABOUT WITH THE MONITORS 3013 02:06:54,760 --> 02:06:55,920 AND THAT MADE SENSE TO ME 3014 02:06:55,920 --> 02:06:56,880 BECAUSE YOU HAVE DATA IN THERE 3015 02:06:56,880 --> 02:07:00,280 AND I CAN SEE THAT CAN BE 3016 02:07:00,280 --> 02:07:02,600 GATHERED AND COLLECTED AND 3017 02:07:02,600 --> 02:07:04,800 UTILIZED AND SOME OF THESE OTHER 3018 02:07:04,800 --> 02:07:11,280 THINGS, MOSTLY HONESTLY I DON'TW 3019 02:07:11,280 --> 02:07:14,760 IT WORKS. 3020 02:07:14,760 --> 02:07:16,760 THE COP SENT AND ETHICAL ISSUES 3021 02:07:16,760 --> 02:07:21,600 AND THOSE TYPES OF THINGS AND -- 3022 02:07:21,600 --> 02:07:22,840 AGAIN, I DON'T KNOW. 3023 02:07:22,840 --> 02:07:24,800 LIKE ANY KIND OF REPOSITORY 3024 02:07:24,800 --> 02:07:27,160 THOSE ARE ISSUES AND ACCESS TO 3025 02:07:27,160 --> 02:07:30,720 THIS DATA AND WHO CAN GET IT IT 3026 02:07:30,720 --> 02:07:32,160 AND WHAT IS IT USED FOR? 3027 02:07:32,160 --> 02:07:33,920 ALL OF THESE THINGS ARE JUST 3028 02:07:33,920 --> 02:07:36,720 CONSIDERATIONS THAT HAVE TO BE 3029 02:07:36,720 --> 02:07:38,440 MADE AND IT IT JUST TO ME ADDS A 3030 02:07:38,440 --> 02:07:41,120 WHOLE NEW DIMENSION. 3031 02:07:41,120 --> 02:07:43,320 JUST WHEN I THOUGHT I WAS 3032 02:07:43,320 --> 02:07:53,880 GETTING A GRASP I HAD ONE OF MY 3033 02:07:59,560 --> 02:08:02,280 COLLEAGUES THAT ASKED ME IF KNEW 3034 02:08:02,280 --> 02:08:03,840 I WAS ON THIS AND WANTED TO KNOW 3035 02:08:03,840 --> 02:08:05,480 IF I WAS AWARE OF THIS BRIDGE 3036 02:08:05,480 --> 02:08:09,480 TOP AI PROJECT AND OBVIOUSLY I 3037 02:08:09,480 --> 02:08:11,360 WASN'T AND I DON'T KNOW IF THE 3038 02:08:11,360 --> 02:08:13,240 TAC MEMBERS WERE EITHER. 3039 02:08:13,240 --> 02:08:16,960 THIS PERSON AND THIS INDIVIDUAL 3040 02:08:16,960 --> 02:08:19,360 SPECIFICALLY MENTIONED AS FAR AS 3041 02:08:19,360 --> 02:08:25,440 AMERICAN INDIAN AND DATA GOES 3042 02:08:25,440 --> 02:08:35,920 THERE IT STARTED IN THE 80s 3043 02:08:38,480 --> 02:08:40,280 AND 90s AND INCORPORATED THAT 3044 02:08:40,280 --> 02:08:41,480 DATA INTO THIS SO AGAIN, I DON'T 3045 02:08:41,480 --> 02:08:42,680 KNOW IF IF YOU HAVE ANY 3046 02:08:42,680 --> 02:08:46,400 KNOWLEDGE OF THAT AND OR JUST -- 3047 02:08:46,400 --> 02:08:49,000 I THINK IT WILL TAKE EDUCATION 3048 02:08:49,000 --> 02:08:54,200 FOR TO FIGURE OUT HOW TO GRASP 3049 02:08:54,200 --> 02:08:55,400 ETHICAL CONSIDERATIONS FOR THIS 3050 02:08:55,400 --> 02:08:57,560 TYPE OF WORK AND PARTICULARLY 3051 02:08:57,560 --> 02:08:59,560 WITH AMERICAN INDIAN AND ALASKA 3052 02:08:59,560 --> 02:09:01,840 NATIVE DATA WHICH WE'RE STILL 3053 02:09:01,840 --> 02:09:03,280 GRAPPLING WITH ALL OF US AND 3054 02:09:03,280 --> 02:09:05,360 THINGS LIKE THAT. 3055 02:09:05,360 --> 02:09:08,000 THANK YOU FOR YOUR TIME AND 3056 02:09:08,000 --> 02:09:08,520 APPRECIATE IT. 3057 02:09:08,520 --> 02:09:09,320 >>ABSOLUTELY. 3058 02:09:09,320 --> 02:09:11,000 I REALLY APPRECIATE ALL OF THOSE 3059 02:09:11,000 --> 02:09:12,400 COMMENTS AND I GUESS, ONE THING 3060 02:09:12,400 --> 02:09:14,400 I'LL JUST SAY IS I AM NOT AN 3061 02:09:14,400 --> 02:09:16,800 ARTIFICIAL INTELLIGENCE EXPERT 3062 02:09:16,800 --> 02:09:18,240 EITHER AND THIS WAS THE 3063 02:09:18,240 --> 02:09:19,320 COMPLETELY NEW FIELD FOR ME WHEN 3064 02:09:19,320 --> 02:09:22,560 I JOINED THE PROJECT A COUPLE 3065 02:09:22,560 --> 02:09:23,720 YEARS AGO AND I HAVE JUST 3066 02:09:23,720 --> 02:09:24,920 LEARNED A LOT ABOUT THE 3067 02:09:24,920 --> 02:09:26,720 POTENTIAL PROMISE OF THESE 3068 02:09:26,720 --> 02:09:31,840 TECHNIQUES FOR REALLY ADVANCING 3069 02:09:31,840 --> 02:09:32,800 OUR UNDERSTANDING OF DISEASE ASK 3070 02:09:32,800 --> 02:09:38,560 HOW TO TREAT DISEASE AND IMPROVE 3071 02:09:38,560 --> 02:09:40,080 INDIVIDUAL'S HELP SO I HOPE THIS 3072 02:09:40,080 --> 02:09:44,760 ENDEAVOR CAN REALLY MAKE HUGE 3073 02:09:44,760 --> 02:09:46,040 IMPROVEMENTS AND I THINK OF THAT 3074 02:09:46,040 --> 02:09:47,480 YOU HIT THE NAIL ON THE HEAD IN 3075 02:09:47,480 --> 02:09:49,960 TERMS OF THE NEED FOR EDUCATION 3076 02:09:49,960 --> 02:09:51,120 AND AND CAPACITY BUILDING AND 3077 02:09:51,120 --> 02:09:52,680 IT'S A HUGE PART OF WHAT WE'RE 3078 02:09:52,680 --> 02:09:54,440 TRYING TO DO WITH THE SKILLS AND 3079 02:09:54,440 --> 02:09:56,320 WORKFORCE DEVELOPMENT ASPECTS 3080 02:09:56,320 --> 02:09:58,240 AND THAT WERE REQUIRING ACROSS 3081 02:09:58,240 --> 02:10:00,960 ALL THE PROJECTS AND WELCOME 3082 02:10:00,960 --> 02:10:02,200 BACK THE CONSORTIUM AS A WHOLE 3083 02:10:02,200 --> 02:10:03,600 AND THAT'S ONE THING THAT WE'RE 3084 02:10:03,600 --> 02:10:06,680 REALLY WORKING TOGETHER WITH AIM 3085 02:10:06,680 --> 02:10:10,960 AHEAD AS WELL TO MAKE SURE THAT 3086 02:10:10,960 --> 02:10:12,400 THOSE OPPORTUNITIES ARE 3087 02:10:12,400 --> 02:10:18,440 EXPLICITLY ADVERTISED AND 3088 02:10:18,440 --> 02:10:20,000 RECRUIT SO THAT WE CAN BRING 3089 02:10:20,000 --> 02:10:24,840 THOSE ASPECT AND THAT CAPACITY 3090 02:10:24,840 --> 02:10:26,920 BUILDING TO EVERYONE. 3091 02:10:26,920 --> 02:10:28,080 I ALSO APPRECIATE YOUR COMMENTS 3092 02:10:28,080 --> 02:10:30,080 ABOUT THE NEED FOR EDUCATION TO 3093 02:10:30,080 --> 02:10:34,160 EVEN UNDERSTAND THE ETHICAL 3094 02:10:34,160 --> 02:10:39,960 CONSIDERATIONS AND WE'RE WORKING 3095 02:10:39,960 --> 02:10:46,240 TOWARDS DOING THAT AS WELL. 3096 02:10:46,240 --> 02:10:54,800 I'M AND SO HOPEFULLY THE 3097 02:10:54,800 --> 02:10:56,920 DATASETS WILL INTERFACE IN THE 3098 02:10:56,920 --> 02:10:58,440 FUTURE BUT ALL FOR ALL THOSE 3099 02:10:58,440 --> 02:10:59,480 COMMENTS I APPRECIATE IT IT. 3100 02:10:59,480 --> 02:11:01,000 >>AND JUST THINK FOR THAT AND 3101 02:11:01,000 --> 02:11:02,680 ONE FINAL AND I KNOW WHEN I WAS 3102 02:11:02,680 --> 02:11:04,800 LOOKING AT YOUR PRESENTATION AND 3103 02:11:04,800 --> 02:11:08,480 THE GROUP LIKE THIS FOR ME, I 3104 02:11:08,480 --> 02:11:09,880 THINK OF AMERICAN INDIAN WHEN I 3105 02:11:09,880 --> 02:11:10,520 SEE AI. 3106 02:11:10,520 --> 02:11:11,800 >>I WAS TRYING TO SAY 3107 02:11:11,800 --> 02:11:22,320 ARTIFICIAL INTELLIGENCE AND UP 3108 02:11:37,320 --> 02:11:38,880 WITH OF THE THINGS ABOUT AN 3109 02:11:38,880 --> 02:11:39,560 EDUCATION PIECE WE'VE BEEN 3110 02:11:39,560 --> 02:11:41,360 WORKING CLOSELY WITH THE HIGHER 3111 02:11:41,360 --> 02:11:42,760 EDUCATION CONSORTIUM AND 3112 02:11:42,760 --> 02:11:44,560 PROVIDING PRESENTATIONS MULTIPLE 3113 02:11:44,560 --> 02:11:46,560 REPRESENTATIONS TO THE TCU 3114 02:11:46,560 --> 02:11:50,400 PRESIDENTS SO THAT THEY CAN BE 3115 02:11:50,400 --> 02:11:54,160 MORE FAMILIAR WITH AND WHAT THE 3116 02:11:54,160 --> 02:11:55,800 POWER COULD BE AND THE 3117 02:11:55,800 --> 02:11:57,240 POSSIBILITIES, IT'S IMPORTANT TO 3118 02:11:57,240 --> 02:11:59,200 THINK ABOUT THIS AS HE 3119 02:11:59,200 --> 02:12:00,120 PREDICTIVE INSTRUMENT AND 3120 02:12:00,120 --> 02:12:01,440 SOMETHING WHERE WE MIGHT TO 3121 02:12:01,440 --> 02:12:03,680 IDENTIFY RARE DISEASES IN OUR 3122 02:12:03,680 --> 02:12:07,320 COMMUNITY AND WITH USING LARGE 3123 02:12:07,320 --> 02:12:08,880 DATASETS SO THAT'S ANOTHER 3124 02:12:08,880 --> 02:12:10,400 POWERFUL POINT OR PART OF AI 3125 02:12:10,400 --> 02:12:11,200 THAT WE SHOULD BE CONSIDERING SO 3126 02:12:11,200 --> 02:12:12,320 THE EDUCATION PART IS SOMETHING 3127 02:12:12,320 --> 02:12:15,840 THAT WE'RE HOPING TO COLLABORATE 3128 02:12:15,840 --> 02:12:18,720 WITH AM AND BRIDGES TO AI EX IN 3129 02:12:18,720 --> 02:12:19,960 THE FUTURE. 3130 02:12:19,960 --> 02:12:20,280 THANK YOU. 3131 02:12:20,280 --> 02:12:23,960 >>THANK YOU. 3132 02:12:23,960 --> 02:12:24,960 WE HAVE ANOTHER QUESTION. 3133 02:12:24,960 --> 02:12:26,800 >>YES, THANK YOU FOR YOUR 3134 02:12:26,800 --> 02:12:30,120 PRESENTATION, Dr. MUDD I'M THE 3135 02:12:30,120 --> 02:12:31,680 ALBUQUERQUE AREA DELEGATE AND I 3136 02:12:31,680 --> 02:12:33,240 JUST WANTED TO COMMENT WHEN IT 3137 02:12:33,240 --> 02:12:35,920 CAME TO YOU HAD MENTIONED THE 3138 02:12:35,920 --> 02:12:38,200 FAIR PRINCIPLES WHEN IT COMES TO 3139 02:12:38,200 --> 02:12:39,640 MAKING DATA FINDABLE AND 3140 02:12:39,640 --> 02:12:41,920 ACCESSIBLE AND INTEROPERABLE AND 3141 02:12:41,920 --> 02:12:44,520 REUSABLE AND I WAS JUST 3142 02:12:44,520 --> 02:12:45,360 WONDERING IF YOU HAD AN 3143 02:12:45,360 --> 02:12:49,880 OPPORTUNITY TO LOOK AT THE CARE 3144 02:12:49,880 --> 02:12:52,440 PRINCIPLES BECAUSE IT'S APP 3145 02:12:52,440 --> 02:12:53,880 IMPORTANT, ESPECIALLY WHEN YOU 3146 02:12:53,880 --> 02:12:56,000 ARE GOING TO BE DOING THE PIECE 3147 02:12:56,000 --> 02:12:57,760 WHEN IT COMES TO CAPACITY 3148 02:12:57,760 --> 02:12:59,200 BUILDING AND WHEN IT IT COMES TO 3149 02:12:59,200 --> 02:13:01,440 TRIBAL CONSULTATIONS AND I THINK 3150 02:13:01,440 --> 02:13:06,160 THAT WOULD BE IMPORTANT AND TO 3151 02:13:06,160 --> 02:13:07,240 DEMONSTRATE HOW YOU ARE LOOKING 3152 02:13:07,240 --> 02:13:08,880 AT INCORPORATING THE CARE 3153 02:13:08,880 --> 02:13:10,560 PRINCIPLES AND AGAIN, FOR THOSE 3154 02:13:10,560 --> 02:13:11,840 WHO ARE NOT AS FAMILIAR WITH THE 3155 02:13:11,840 --> 02:13:15,480 CARE PRINCIPLES IT'S REALLY I AM 3156 02:13:15,480 --> 02:13:16,200 TIGE GOV YOUR WORSHIPPANCE 3157 02:13:16,200 --> 02:13:17,240 PRINCIPLES THAT WERE DEVELOPED 3158 02:13:17,240 --> 02:13:19,600 BY THE INDATA SOVEREIGNTY 3159 02:13:19,600 --> 02:13:20,920 SPECIAL INTEREST GROUP AT RIGHT 3160 02:13:20,920 --> 02:13:23,360 SEARCH DATA ALLIANCE WHO 3161 02:13:23,360 --> 02:13:25,520 DEVELOPED THE PAIR PRINCIPLES 3162 02:13:25,520 --> 02:13:28,320 AND SO THE INDIGENOUS GROUP CAME 3163 02:13:28,320 --> 02:13:31,680 UP WITH THE PRINCIPLES TO 3164 02:13:31,680 --> 02:13:32,760 COMPLIMENT TO RIGHTS AND CENTERS 3165 02:13:32,760 --> 02:13:34,240 AND DATA ARE ALSO RECOGNIZED 3166 02:13:34,240 --> 02:13:44,680 IT'S COLLECTIVE BENEFIT AND 3167 02:13:45,120 --> 02:13:46,760 CENTS TO IMPORTANT THAT WE 3168 02:13:46,760 --> 02:13:51,200 REALLY LOOK AT OUR OWN ETHICAL 3169 02:13:51,200 --> 02:13:52,680 FRAMEWORK BASED ON WHERE WE COME 3170 02:13:52,680 --> 02:13:59,160 FROM AND SOMETIMES MY 3171 02:13:59,160 --> 02:14:01,880 UNDERSTANDING MAY DIFFER BECAUSE 3172 02:14:01,880 --> 02:14:03,200 I'M A PUEBLO INDIAN WOMAN AND IT 3173 02:14:03,200 --> 02:14:04,360 DOESN'T ALIGN WITH A WESTERN 3174 02:14:04,360 --> 02:14:06,000 VALUE SYSTEM SO IT'S A IMPORTANT 3175 02:14:06,000 --> 02:14:08,920 PART OF THE CONVERSATION BECAUSE 3176 02:14:08,920 --> 02:14:10,960 I THINK THAT THE TERM ETHICS 3177 02:14:10,960 --> 02:14:11,920 MEANS DIFFERENT THINGS TO 3178 02:14:11,920 --> 02:14:12,720 DIFFERENT PEOPLE SO THANK YOU 3179 02:14:12,720 --> 02:14:15,520 AGAIN FOR YOUR PRESENTATION. 3180 02:14:15,520 --> 02:14:17,520 >>YES AND THANK YOU FOR THOSE 3181 02:14:17,520 --> 02:14:18,600 COMMENTS AND FOR BRINGING THAT 3182 02:14:18,600 --> 02:14:20,680 UP AND I REALLY AM SORRY I 3183 02:14:20,680 --> 02:14:25,160 DIDN'T I AM CONCLUDE THAT IN THE 3184 02:14:25,160 --> 02:14:26,240 PRESENTATION AND OUR ETHICS IN 3185 02:14:26,240 --> 02:14:27,120 THE BRIDGE CENTER THAT IS GOING 3186 02:14:27,120 --> 02:14:37,600 TO BE WORKING TOWARDS REALLY 3187 02:14:39,040 --> 02:14:41,400 IT'S BE FAIR EX CARE AND THEY'RE 3188 02:14:41,400 --> 02:14:42,680 INCORPORATING BOTH THE FAIR AND 3189 02:14:42,680 --> 02:14:49,320 CARE PRINCIPLES AND WORKING 3190 02:14:49,320 --> 02:14:55,440 THROUGH AND WHAT IT MEANS IN 3191 02:14:55,440 --> 02:14:57,840 THIS SPACE SO IT'S A CRITICALLY 3192 02:14:57,840 --> 02:14:59,200 IMPORTANT ELEMENT AND I 3193 02:14:59,200 --> 02:15:00,400 APOLOGIZE FOR NOT INCLUDING IT 3194 02:15:00,400 --> 02:15:01,120 IN MY SLIDES. 3195 02:15:01,120 --> 02:15:08,200 THANK YOU FOR BRINGING IT UP. 3196 02:15:08,200 --> 02:15:08,880 >>Governor Inslee: DO WE HAVE 3197 02:15:08,880 --> 02:15:16,880 ANY OTHER QUESTIONS? 3198 02:15:16,880 --> 02:15:19,840 >>I JUST HAVE ONE FURTHER 3199 02:15:19,840 --> 02:15:20,040 COMMENT. 3200 02:15:20,040 --> 02:15:20,560 YOU KNOW. 3201 02:15:20,560 --> 02:15:22,360 FOR SEVERAL YEARS NOW WE'VE BEEN 3202 02:15:22,360 --> 02:15:23,520 WORKING WITH A LOT OF THESE BIG 3203 02:15:23,520 --> 02:15:26,280 DATA PROJECTS AND PARTICULARLY 3204 02:15:26,280 --> 02:15:29,320 I'M THINKING OF IN MIND A 3205 02:15:29,320 --> 02:15:30,880 PRECISION MEDICINE AND RESEARCH 3206 02:15:30,880 --> 02:15:39,920 AND REALLY TARGETED MEDICINE AND 3207 02:15:39,920 --> 02:15:45,000 AND TO MY KNOWLEDGE THAT HASN'T 3208 02:15:45,000 --> 02:15:46,080 REALLY BLOSSOMED TO WHERE WE 3209 02:15:46,080 --> 02:15:47,160 THOUGHT IT IT WOULD BE SEVERAL 3210 02:15:47,160 --> 02:15:51,240 YEARS AGO SO I JUST MADE IT A 3211 02:15:51,240 --> 02:15:52,640 CAUTIONARY NOTE THAT THE 3212 02:15:52,640 --> 02:15:53,680 PROJECTS LIKE THIS THAT 3213 02:15:53,680 --> 02:16:04,240 HOPEFULLY ARE PROMISING AND THIS 3214 02:16:14,160 --> 02:16:15,400 IS THE WAVE OF THE FUTURE AND 3215 02:16:15,400 --> 02:16:16,920 THESE ARE THE THINGS THAT WILL 3216 02:16:16,920 --> 02:16:18,120 TRANSFORM HEALTHCARE AND 3217 02:16:18,120 --> 02:16:21,440 MEDICINE AND IT HASN'T REALLY 3218 02:16:21,440 --> 02:16:21,680 HAPPENED. 3219 02:16:21,680 --> 02:16:23,040 O, JUST I TAKE THOSE OF US WHO 3220 02:16:23,040 --> 02:16:24,200 HAVE BEEN AROUND A WHILE ARE 3221 02:16:24,200 --> 02:16:34,200 KIND OF MINDFUL OF SOME OF THOSE 3222 02:16:34,200 --> 02:16:35,000 PAT EXPERIENCES. 3223 02:16:35,000 --> 02:16:35,320 THANK YOU. 3224 02:16:35,320 --> 02:16:37,400 >>THANK YOU FOR THAT COMMENT 3225 02:16:37,400 --> 02:16:38,800 AND WE APPROACH BRIDGE TO AI 3226 02:16:38,800 --> 02:16:40,520 ITSELF AS AN EXPERIMENT AND THE 3227 02:16:40,520 --> 02:16:43,320 WAY THAT WE'RE COMBINING THESE 3228 02:16:43,320 --> 02:16:45,560 DIFFERENT AREAS OF EXPERTISES AS 3229 02:16:45,560 --> 02:16:46,600 AN EXPERIMENT AND WE HOPE TO 3230 02:16:46,600 --> 02:16:48,160 LEARN A LOT FROM THE PROCESS AS 3231 02:16:48,160 --> 02:16:53,400 WELL AS THE OUTCOMES. 3232 02:16:53,400 --> 02:16:53,600 YES. 3233 02:16:53,600 --> 02:16:59,040 >>THANK YOU I APPRECIATE THAT. 3234 02:16:59,040 --> 02:17:00,440 AND THANK YOU FOR YOUR 3235 02:17:00,440 --> 02:17:00,840 PRESENTATION. 3236 02:17:00,840 --> 02:17:03,960 THE INFORMATION YOU PROVIDED E. 3237 02:17:03,960 --> 02:17:04,920 IT WAS VERY DENSE AND YOU WEPT 3238 02:17:04,920 --> 02:17:07,560 THROUGH IT IT VERY QUICKLIES. 3239 02:17:07,560 --> 02:17:11,120 I DID LOOK FOR IT ON OUR DROP 3240 02:17:11,120 --> 02:17:13,440 BOX BUT WHEN WE GET A CHANCE TOP 3241 02:17:13,440 --> 02:17:16,120 REALLY LOOK AT IT THERE THERE'S 3242 02:17:16,120 --> 02:17:18,200 ANOTHER OPPORTUNITY TO ABOUT 3243 02:17:18,200 --> 02:17:18,880 OVER THIS AGAIN BECAUSE I THINK 3244 02:17:18,880 --> 02:17:21,720 IT IS REALLY IMPORTANT FOR US O 3245 02:17:21,720 --> 02:17:23,160 TAKE A LITTLE BIT MORE TIME TO 3246 02:17:23,160 --> 02:17:24,400 HAVE A LITTLE BIT MORE 3247 02:17:24,400 --> 02:17:25,680 DISCUSSION AND AFTER WE HAVE 3248 02:17:25,680 --> 02:17:36,400 TIME TO REVIEW IT AND MOVE ON. 3249 02:17:36,400 --> 02:17:38,280 >>I'M SHARE MY SLIDES. 3250 02:17:38,280 --> 02:17:40,920 >>THANK YOU, VERY MUCH. 3251 02:17:40,920 --> 02:17:46,320 >>THANK YOU. 3252 02:17:50,880 --> 02:17:55,160 WE'LL MOVE ON TO OUR NEXT 3253 02:17:55,160 --> 02:17:56,200 PRESENTERS. 3254 02:17:56,200 --> 02:18:00,560 AND WE HAVE Dr. BERGER AND 3255 02:18:00,560 --> 02:18:01,480 Dr. HULL WHO HAD PRESENT ON 3256 02:18:01,480 --> 02:18:04,200 NIH POLICIES, PROTECTIONS AND 3257 02:18:04,200 --> 02:18:05,840 IMPLICATIONS AND FOR THE ETHICAL 3258 02:18:05,840 --> 02:18:07,640 CONDUCT OF RESEARCH WITH TRIBAL 3259 02:18:07,640 --> 02:18:09,880 COMMUNITIES INCLUDING GENETIC 3260 02:18:09,880 --> 02:18:10,480 RESEARCH. 3261 02:18:10,480 --> 02:18:12,880 SO, IT THANK YOU Dr. HULL EX 3262 02:18:12,880 --> 02:18:13,840 Dr. BERGER FOR BEING HERE 3263 02:18:13,840 --> 02:18:15,640 TODAY AND I APPRECIATE, WE ALL 3264 02:18:15,640 --> 02:18:16,840 APPRECIATE IT AND THANK YOU 3265 02:18:16,840 --> 02:18:18,280 ESPECIALLY Dr. HULL FOR 3266 02:18:18,280 --> 02:18:19,920 JOINING US IN OUR MEETINGS AND 3267 02:18:19,920 --> 02:18:25,360 REALLY LISTENING TO THE TOPICS 3268 02:18:25,360 --> 02:18:26,600 AND BEING ABLE TO WORK WITH US 3269 02:18:26,600 --> 02:18:28,760 IN OUR AGENDA TO HIGHLIGHT THE 3270 02:18:28,760 --> 02:18:31,200 AREAS THAT ARE IMPORTANT TO TACK 3271 02:18:31,200 --> 02:18:32,720 AND WHAT IS HAPPENING IN 3272 02:18:32,720 --> 02:18:34,640 RESEARCH IN INDIAN COUNTRIES AND 3273 02:18:34,640 --> 02:18:35,360 ALASKA SO WHICH REALLY 3274 02:18:35,360 --> 02:18:36,880 APPRECIATE IT IT AND WE ARE 3275 02:18:36,880 --> 02:18:39,440 LOOKING FORWARD TO YOUR 3276 02:18:39,440 --> 02:18:39,800 PRESENTATION. 3277 02:18:39,800 --> 02:18:40,400 >>THANK YOU. 3278 02:18:40,400 --> 02:18:44,360 WE'LL GO AHEAD AND SHARE MY 3279 02:18:44,360 --> 02:18:45,080 SLIDES HERE. 3280 02:18:45,080 --> 02:18:48,120 THE SLIDE SHOW I HAVE UP. 3281 02:18:48,120 --> 02:18:58,600 BEAR WITH ME FOR ONE SECOND. 3282 02:19:04,600 --> 02:19:06,600 >>MY NAME IS ADAM BERGER AND 3283 02:19:06,600 --> 02:19:08,840 I'LL KICK US OFF BEFORE I TURN 3284 02:19:08,840 --> 02:19:10,240 IT OVER TO Dr. HULL AND WE'RE 3285 02:19:10,240 --> 02:19:12,040 GOING TO GO BACK AND FOURTH IN 3286 02:19:12,040 --> 02:19:12,960 THIS TALK AS WELL SO YOU WILL 3287 02:19:12,960 --> 02:19:14,640 HEAR FROM BOTH OF US IN VARIOUS 3288 02:19:14,640 --> 02:19:16,080 POINTS AND I DO WANT TO START 3289 02:19:16,080 --> 02:19:17,920 OUT AND SAY MY NAME IS IS ADAM 3290 02:19:17,920 --> 02:19:19,240 BURGER AND I'M THE DIRECTOR OF 3291 02:19:19,240 --> 02:19:20,440 CRITICAL AND HEALTHCARE RESEARCH 3292 02:19:20,440 --> 02:19:22,080 IN THE OFFICE OF SCIENCE POLICY 3293 02:19:22,080 --> 02:19:23,920 AND I WOULD LIKE TO GIVE A BIG 3294 02:19:23,920 --> 02:19:25,920 THANKS TO Dr. WILSON AND ALL 3295 02:19:25,920 --> 02:19:27,480 THE TAC MEMBERS FOR THE INVITE 3296 02:19:27,480 --> 02:19:31,360 AND THE OPPORTUNITY TO SPEAK TO 3297 02:19:31,360 --> 02:19:39,360 YOU TODAY. 3298 02:19:39,360 --> 02:19:41,520 OUR TALK IS GOING TO BE 3299 02:19:41,520 --> 02:19:43,960 HISTORICAL REVIEW FOR POLICIES 3300 02:19:43,960 --> 02:19:45,760 AND LEADING INTO SOME 3301 02:19:45,760 --> 02:19:47,760 CONTEMPORARY RESEARCH AND 3302 02:19:47,760 --> 02:19:49,480 PRACTICES THAT WE HAVE ON GOING 3303 02:19:49,480 --> 02:19:51,080 AND WE'LL SHIFT OVER TO CONCEPT 3304 02:19:51,080 --> 02:19:52,800 AND GENOMIC DATA SHARING AS WELL 3305 02:19:52,800 --> 02:19:54,400 AS DEALING WITH SOME OF THE DATA 3306 02:19:54,400 --> 02:19:55,520 MANAGEMENT AND SHARING POLICIES 3307 02:19:55,520 --> 02:19:57,280 AND ACTIVITIES THAT WE'VE HAD 3308 02:19:57,280 --> 02:19:59,280 GOING ON RECENTLY THAT YOU HEARD 3309 02:19:59,280 --> 02:20:00,960 FROM DR. TABAK AND THEN ENDING 3310 02:20:00,960 --> 02:20:11,480 ON THE IMPORTANCE OF INCLUSION. 3311 02:20:17,640 --> 02:20:20,160 >>AND OVERSEEING PRESIDENT 3312 02:20:20,160 --> 02:20:22,160 OMICRON AND CROSS ALL OF HHS BUT 3313 02:20:22,160 --> 02:20:26,640 YOU KNOW, I WILL SAY IT'S REALLY 3314 02:20:26,640 --> 02:20:28,720 THE STORY OF THAT SPEAKS TO MY 3315 02:20:28,720 --> 02:20:30,600 INTEREST IN INSURING PROTECTIONS 3316 02:20:30,600 --> 02:20:31,680 FOR BOTH RESEARCH PARTICIPANTS 3317 02:20:31,680 --> 02:20:33,600 AND PATIENTS AND I'M NOT GOING 3318 02:20:33,600 --> 02:20:36,200 TO GO INTO IT TODAY, BUT JUST 3319 02:20:36,200 --> 02:20:37,280 BECAUSE WE HAVE A LOT TO COVER 3320 02:20:37,280 --> 02:20:40,400 BUT IT'S A TALE WITH 3321 02:20:40,400 --> 02:20:41,600 UNFORTUNATELILY DEADLY 3322 02:20:41,600 --> 02:20:42,280 CONSEQUENCES BECAUSE THERE 3323 02:20:42,280 --> 02:20:44,040 WEREN'T ADEQUATE PROTECTIONS IN 3324 02:20:44,040 --> 02:20:44,240 PLACE. 3325 02:20:44,240 --> 02:20:46,200 IT DID LEAD TO CHANGE FOR THE 3326 02:20:46,200 --> 02:20:46,520 BETTER. 3327 02:20:46,520 --> 02:20:47,600 IT'S ONE OF THE THINGS WE NEED 3328 02:20:47,600 --> 02:20:48,520 TO REMEMBER ABOUT WHAT WE CAN 3329 02:20:48,520 --> 02:20:49,800 LEARN FROM THE PAST AND IT'S 3330 02:20:49,800 --> 02:20:52,200 THIS CONCEPT OF NEVER FOR 3331 02:20:52,200 --> 02:20:53,400 GETTING OUR PAST THAT WE CAN 3332 02:20:53,400 --> 02:20:54,720 ALWAYS DO BETTER IN THE PRESENT 3333 02:20:54,720 --> 02:20:57,240 AND IT SPEAKS TO ME AND I THINK 3334 02:20:57,240 --> 02:20:59,840 THIS QUOTE FROM GEORGE CAPTURED 3335 02:20:59,840 --> 02:21:00,640 THAT PERFECTLY. 3336 02:21:00,640 --> 02:21:02,000 IF YOU DON'T REMEMBER THE PAST 3337 02:21:02,000 --> 02:21:03,720 YOU ARE GOING TO BE CONDEMNED TO 3338 02:21:03,720 --> 02:21:04,400 REPEAT IT IT. 3339 02:21:04,400 --> 02:21:05,920 AS I NOTED, WE'RE GOING TO GIVE 3340 02:21:05,920 --> 02:21:08,160 SORT OF A HISTORICAL WALK 3341 02:21:08,160 --> 02:21:09,680 THROUGH ON RESEARCH PROTECTIONS 3342 02:21:09,680 --> 02:21:12,280 AND SOME OF THE PAST EVENTS THAT 3343 02:21:12,280 --> 02:21:13,480 WE'LL QUICKLY COVER. 3344 02:21:13,480 --> 02:21:14,800 AND HOW THEY SHAPE THE 3345 02:21:14,800 --> 02:21:20,680 PROTECTIONS THAT WE HAVE TODAY. 3346 02:21:20,680 --> 02:21:21,840 WE'LL STARRED IN 946 THIS IS THE 3347 02:21:21,840 --> 02:21:26,280 END OF WORLD WAR II. 3348 02:21:26,280 --> 02:21:26,640 AND -- 1946. 3349 02:21:26,640 --> 02:21:29,840 ON TRIAL ARE 23 PHYSICISTS AND 3350 02:21:29,840 --> 02:21:31,360 PHYSICIANS TRIED FOR WAR CRIMES 3351 02:21:31,360 --> 02:21:32,680 AND CRIMES AGAINST HUMANITY AND 3352 02:21:32,680 --> 02:21:34,320 I CAN'T THINK OF A BETTER WAY TO 3353 02:21:34,320 --> 02:21:36,480 DESCRIBE WHAT WE'RE TALKING THAN 3354 02:21:36,480 --> 02:21:37,880 JUST TO QUOTE THE CHARGES 3355 02:21:37,880 --> 02:21:39,160 DIRECTLY AND THE CHARGES IN THIS 3356 02:21:39,160 --> 02:21:43,480 CASE WERE COMMITTING MEDICAL 3357 02:21:43,480 --> 02:21:47,520 EXPERIMENTS WITHOUT CONSENT AND 3358 02:21:47,520 --> 02:21:50,320 THOSE COMMITTED MURDERS, 3359 02:21:50,320 --> 02:21:54,280 BRUTALITY, CRUELTY AND OTHER 3360 02:21:54,280 --> 02:21:55,120 INHUMAN ACTS. 3361 02:21:55,120 --> 02:21:57,120 MANY VICTIMS SUFFERED AGONY, 3362 02:21:57,120 --> 02:21:59,120 PERMANENT DISABILITY, 3363 02:21:59,120 --> 02:22:00,040 EXPERIMENTS CAUSED PAIN AND 3364 02:22:00,040 --> 02:22:01,520 SUFFERING AND RESULTED IN 3365 02:22:01,520 --> 02:22:02,920 SERIOUS BODILY INJURIES TO THE 3366 02:22:02,920 --> 02:22:03,160 VICTIMS. 3367 02:22:03,160 --> 02:22:06,240 AND THE CHARGES GO ON. 3368 02:22:06,240 --> 02:22:09,360 THEY DID LEAD TO THE DEVELOPMENT 3369 02:22:09,360 --> 02:22:10,000 OF THE NEWERREN BERG CODE WHICH 3370 02:22:10,000 --> 02:22:12,400 IS THE FIRST INTERNATIONAL CODE 3371 02:22:12,400 --> 02:22:14,680 OF RESEARCH ETHICS AND 3372 02:22:14,680 --> 02:22:16,360 PARTICIPATION AND THIS IS IS OUR 3373 02:22:16,360 --> 02:22:20,400 DEVELOPED IN 1948 AND WHAT IT 3374 02:22:20,400 --> 02:22:22,400 REALLY GOES DOWN AND YOU HAVE TO 3375 02:22:22,400 --> 02:22:24,680 GET COP SENT AND OF IT MUST BE 3376 02:22:24,680 --> 02:22:26,320 VOLUNTARILY PROVIDED AND YOU 3377 02:22:26,320 --> 02:22:31,080 HAVE TO JUSTIFY THE 3378 02:22:31,080 --> 02:22:41,640 SUPERVISORMENTS AND AND WE'RE 14 3379 02:23:10,920 --> 02:23:12,680 YEARS INTO THE U.S. 3380 02:23:12,680 --> 02:23:14,560 PUBLIC-HEALTH SERVICE CONDUCTING 3381 02:23:14,560 --> 02:23:18,120 THE EXPERIMENT AND THIS WENT ON 3382 02:23:18,120 --> 02:23:21,760 TO BE A 40-YEAR EXPERIMENT. 3383 02:23:21,760 --> 02:23:26,320 400 BLACK MEN INFECTED WITH SEV 3384 02:23:26,320 --> 02:23:28,160 LUS WERE NEVER TOLD THEY HAD THE 3385 02:23:28,160 --> 02:23:29,440 DISEASE AND WHAT IT CAN DO TO 3386 02:23:29,440 --> 02:23:30,600 THEM NOR WERE THEY GIVEN 3387 02:23:30,600 --> 02:23:33,160 TREATMENTS WHEN IT WAS 3388 02:23:33,160 --> 02:23:33,400 AVAILABLE. 3389 02:23:33,400 --> 02:23:35,040 THE MEN BELIEVE THEY WERE IN A 3390 02:23:35,040 --> 02:23:38,440 GOVERNMENT STUDY AND THE STORY 3391 02:23:38,440 --> 02:23:40,920 AT THE END OF THE DAY IS ONE OF 3392 02:23:40,920 --> 02:23:42,560 EXPLOITATIONS AND DECEPTION AND 3393 02:23:42,560 --> 02:23:43,360 WITHHOLDING OF TREATMENT AND 3394 02:23:43,360 --> 02:23:44,520 LACK OF INFORMED CONCEPT AND ALL 3395 02:23:44,520 --> 02:23:46,880 IN THE NAME OF SCIENCE. 3396 02:23:46,880 --> 02:23:48,920 AND 100 OF THOSE GENTLEMAN DIED. 3397 02:23:48,920 --> 02:23:52,120 AND THIS REALLY IS A DISTRUST OF 3398 02:23:52,120 --> 02:23:53,720 THE BIOMEDICAL RESEARCH PRIZE 3399 02:23:53,720 --> 02:24:00,480 THAT LINGERS TO THIS DAY, 3400 02:24:00,480 --> 02:24:01,040 STATEMENT THE NEWERRENBERG 3401 02:24:01,040 --> 02:24:03,080 TRIALS ARE GOING ON WE HAVE THE 3402 02:24:03,080 --> 02:24:05,680 GUATEMALA STUDIES AND IT'S 1946 3403 02:24:05,680 --> 02:24:07,680 TO 1948 AND THE STUDY OF BIO 3404 02:24:07,680 --> 02:24:09,000 ETHICAL ISSUES WROTE A REPORT ON 3405 02:24:09,000 --> 02:24:10,840 THIS AND SO I WON'T GO DEEPLY 3406 02:24:10,840 --> 02:24:16,080 INTO DETAILS AND THE U.S. AND IN 3407 02:24:16,080 --> 02:24:17,320 THIS CASE, THEY WERE 3408 02:24:17,320 --> 02:24:21,120 INTENTIONALLY EXPOSING AND THE 3409 02:24:21,120 --> 02:24:22,520 STD WITHOUT AND IN THIS CASE, 3410 02:24:22,520 --> 02:24:25,000 THESE WERE SOME OF THE MOST 3411 02:24:25,000 --> 02:24:27,000 VULNERABLE AND PRISONERS AND 3412 02:24:27,000 --> 02:24:27,960 MILITARY AND THEY WERE 3413 02:24:27,960 --> 02:24:33,520 PSYCHIATRIC PATIENTS AND OTHERS. 3414 02:24:33,520 --> 02:24:35,200 IT INCLUDED IT BECAUSE IT HAS A 3415 02:24:35,200 --> 02:24:38,240 DIRECT CORRELATION AND WHERE 3416 02:24:38,240 --> 02:24:39,640 INFO CONSENT COMES INTO PLAY IN 3417 02:24:39,640 --> 02:24:42,800 THE UNITED STATES. 3418 02:24:42,800 --> 02:24:44,840 AND THIS IS IMPORTANT TO NOTE 3419 02:24:44,840 --> 02:24:46,760 THAT IT WAS CREATED AND MARKETED 3420 02:24:46,760 --> 02:24:48,440 IN EUROPE FOR MORNING SICKNESS 3421 02:24:48,440 --> 02:24:50,200 AND IT ENDED UP CAUSING SEVERE 3422 02:24:50,200 --> 02:24:51,680 BIRTH DEFECTS AND DEATHS IN 3423 02:24:51,680 --> 02:24:53,120 BABIES BUT IT WAS NEVER ACTUALLY 3424 02:24:53,120 --> 02:24:54,480 MARKETED HERE IN THE U.S. AND IT 3425 02:24:54,480 --> 02:24:56,080 WAS NEVER APPROVED FOR USE HERE 3426 02:24:56,080 --> 02:24:57,400 IN THE STATES. 3427 02:24:57,400 --> 02:24:58,800 BUT, SAMPLES WERE ACTUALLY SENT 3428 02:24:58,800 --> 02:25:02,600 TO U.S. DO DOCTOR OF PATIENTS AD 3429 02:25:02,600 --> 02:25:04,640 THEY WERE NEVER TOLD IT WAS 3430 02:25:04,640 --> 02:25:05,920 EXPERIMENTAL SO AT THE END OF 3431 02:25:05,920 --> 02:25:08,760 THIS, WHILE IT WASN'T AS MANY 3432 02:25:08,760 --> 02:25:10,520 PATIENTS AS YOU FOUND IN YOUR UP 3433 02:25:10,520 --> 02:25:13,720 AYOUR WORSHIP UP AND ELSEWHERE 3434 02:25:13,720 --> 02:25:15,240 BABIES WERE BORN IN THE U.S. 3435 02:25:15,240 --> 02:25:17,640 BECAUSE OF THIS APPROVED 3436 02:25:17,640 --> 02:25:18,560 EXPERIMENTATION AND WHAT IT 3437 02:25:18,560 --> 02:25:19,880 LEADS TO AND AGAIN COMING BACK 3438 02:25:19,880 --> 02:25:24,200 TO CONCEPT OF TRYING TO LEARN 3439 02:25:24,200 --> 02:25:25,840 WHERE DOES IT BRING US TODAY, IT 3440 02:25:25,840 --> 02:25:28,520 LED TO THE 1962 AMENDMENTS THAT 3441 02:25:28,520 --> 02:25:31,280 THE FEDERAL FOOD AND DRUG 3442 02:25:31,280 --> 02:25:34,760 COSMETIC ACT AND IT REALLY 3443 02:25:34,760 --> 02:25:35,560 CODIFIED NOW IT WAS A 3444 02:25:35,560 --> 02:25:38,600 REQUIREMENT IN THE U.S. FOR DRUG 3445 02:25:38,600 --> 02:25:39,600 TRIALS AND THE NEWERRENBERG CODE 3446 02:25:39,600 --> 02:25:41,280 WAS THE FIRST CODE TO ADVOCATE 3447 02:25:41,280 --> 02:25:42,400 FOR INFORMED CONSENT BUT HERE IN 3448 02:25:42,400 --> 02:25:44,600 THE U.S. IT'S A AMENDMENTS THAT 3449 02:25:44,600 --> 02:25:53,600 WERE THE FIRST LAW TO REQUIRE 3450 02:25:53,600 --> 02:25:53,960 IT. 3451 02:25:53,960 --> 02:25:56,040 GOING FORWARD, YOU GO TO 1964 3452 02:25:56,040 --> 02:25:57,880 AND HEALTH SAY TEE AND IT LAYS 3453 02:25:57,880 --> 02:25:59,280 OUT THE BASIC PRINCIPLES FOR 3454 02:25:59,280 --> 02:26:00,600 PHYSICIAN INVOLVEMENT OR 3455 02:26:00,600 --> 02:26:02,040 RESEARCH AND YOU NEED TO 3456 02:26:02,040 --> 02:26:05,000 ACTUALLY HAVE EXPERIMENTATION ON 3457 02:26:05,000 --> 02:26:06,560 ANIMALS OF YOU MOVE INTO HUMANS 3458 02:26:06,560 --> 02:26:08,240 AND THE RESEARCH HAS TO BE 3459 02:26:08,240 --> 02:26:10,520 REVIEWED BY AN INDEPENDENT BODY 3460 02:26:10,520 --> 02:26:11,560 BEFORE IT'S CONDUCTED ASK 3461 02:26:11,560 --> 02:26:12,680 QUALIFIED INDIVIDUALS THAT ARE 3462 02:26:12,680 --> 02:26:19,400 CONDUCTCONDUCT THE EXPECTMENT AH 3463 02:26:19,400 --> 02:26:20,680 THE BENEFIT AND RISK OF THE 3464 02:26:20,680 --> 02:26:22,120 ACTUAL EXPERIMENT ITSELF AND YOU 3465 02:26:22,120 --> 02:26:24,840 HAVE TO RESPECT PARTISAN PRIVACY 3466 02:26:24,840 --> 02:26:26,720 AS WELL AS THE VOLUNTARY AND USE 3467 02:26:26,720 --> 02:26:32,200 OCONSENT. 3468 02:26:32,200 --> 02:26:34,480 THE INTERESTING THING AND THE 3469 02:26:34,480 --> 02:26:36,160 MINORS AND ABLE TO GIVE IN 3470 02:26:36,160 --> 02:26:38,360 ADDITION TO THE LEGAL GUARDIAN 3471 02:26:38,360 --> 02:26:39,880 AND ANIMAL WELFARE AS WELL SO 3472 02:26:39,880 --> 02:26:42,480 YOU ARE SEEING A MUCH MORE 3473 02:26:42,480 --> 02:26:43,760 ROBUST OVERSIGHT FRAMEWORK HOW 3474 02:26:43,760 --> 02:26:45,200 YOU CONDUCT RESEARCH IN THE U.S. 3475 02:26:45,200 --> 02:26:49,720 AND TAKE PLACE. 3476 02:26:49,720 --> 02:26:51,520 AND THERE WERE OTHER 3477 02:26:51,520 --> 02:26:57,800 DEVELOPMENTS, 1966, SURGEON 3478 02:26:57,800 --> 02:27:08,320 GENERAL EVEN BEFORE 966 BEFORE 3479 02:27:37,200 --> 02:27:45,120 ANY OF THESE THEY HAVE A METH 3480 02:27:45,120 --> 02:27:47,360 CAL RESPONSIBILITY TO RESEARCH 3481 02:27:47,360 --> 02:27:50,760 MEDICAL CARE AND IN 1963, 1966 3482 02:27:50,760 --> 02:27:52,720 WHERE YOU GET FDA REGULATIONS 3483 02:27:52,720 --> 02:27:53,880 COMING INTO PLAY AND SO YOU 3484 02:27:53,880 --> 02:28:04,440 KNOW, ALL OF THIS TAKES IN PLACE 3485 02:28:31,400 --> 02:28:32,520 AND THEIR CHANGED TO IDENTIFY 3486 02:28:32,520 --> 02:28:34,280 THE BASIC ETHICAL PRINCIPLES 3487 02:28:34,280 --> 02:28:35,840 THAT SHOULD UNDERLINE THE 3488 02:28:35,840 --> 02:28:37,600 CONDUCT OF THE BEHAVIOR AND 3489 02:28:37,600 --> 02:28:38,840 BIOMEDICAL RESEARCH WITH HUMAN 3490 02:28:38,840 --> 02:28:40,080 BEINGS AND THE OTHER THING THAT 3491 02:28:40,080 --> 02:28:41,160 THEY WERE CHARGED WITH WAS 3492 02:28:41,160 --> 02:28:41,960 DEVELOPING GUIDELINES THAT 3493 02:28:41,960 --> 02:28:42,920 SHOULD BE FOLLOWED TO ASSURE 3494 02:28:42,920 --> 02:28:44,760 THAT THE RESEARCH ITSELF IS 3495 02:28:44,760 --> 02:28:47,480 CONDUCTED IN ACCORDANCE WITH SET 3496 02:28:47,480 --> 02:28:48,760 PRINCIPLES AND THAT COMMISSION 3497 02:28:48,760 --> 02:28:51,080 IS WHAT IS IS THE ONE THAT 3498 02:28:51,080 --> 02:28:53,520 ACTUALLY ISSUED WHAT IS KNOWN AS 3499 02:28:53,520 --> 02:28:54,720 THE BELMONT REPORT. 3500 02:28:54,720 --> 02:28:59,400 THE BELMONT REPORT COMES OUT IN 3501 02:28:59,400 --> 02:29:01,160 1979 PROVIDING A FRAMEWORK THAT 3502 02:29:01,160 --> 02:29:03,000 WOULD GUIDE THE RESOLUTION TO 3503 02:29:03,000 --> 02:29:04,000 ETHICAL PROBLEMS FROM RESEARCH 3504 02:29:04,000 --> 02:29:06,040 AND IT CAME OUT WITH THREE BASIC 3505 02:29:06,040 --> 02:29:07,120 PRINCIPLES FOR THE ETHICAL 3506 02:29:07,120 --> 02:29:10,160 CONDUCT OF RESEARCH. 3507 02:29:10,160 --> 02:29:11,920 THESE PRINCIPLES ARE RESPECT FOR 3508 02:29:11,920 --> 02:29:13,840 AMERICANS AND BENEFITS AND 3509 02:29:13,840 --> 02:29:14,640 JUSTICE AND THEIR APPLICATION 3510 02:29:14,640 --> 02:29:16,280 COMES OUT OF THE CONCEPTS OF 3511 02:29:16,280 --> 02:29:18,280 INFORMED CONSENT AND RISK AND 3512 02:29:18,280 --> 02:29:22,760 BENEFITS BEING SYSTEMATICALLY 3513 02:29:22,760 --> 02:29:25,800 ASSESSED AND THE OTHER THING 3514 02:29:25,800 --> 02:29:27,320 THAT THE BELMONT REPORT DID IS 3515 02:29:27,320 --> 02:29:32,120 HIGHLIGHTS THE NEED FOR 3516 02:29:32,120 --> 02:29:33,520 INJUSTICE AND DISPARITIES AND 3517 02:29:33,520 --> 02:29:35,160 IT'S REALLY IMPORTANT FOUNDATION 3518 02:29:35,160 --> 02:29:36,920 APPROACH FOR US AS A SOCIETY TO 3519 02:29:36,920 --> 02:29:38,560 MOVE TOWARDS RESEARCH 3520 02:29:38,560 --> 02:29:39,000 PROTECTIONS. 3521 02:29:39,000 --> 02:29:41,120 SO, THAT LED DIRECTLY INTO THE 3522 02:29:41,120 --> 02:29:44,200 COMMON RULE SO THIS IS WERE IN 3523 02:29:44,200 --> 02:29:45,720 1981, THE DEPARTMENT OF HEALTH 3524 02:29:45,720 --> 02:29:47,520 EDUCATION OF WELFARE AND THE 3525 02:29:47,520 --> 02:29:50,000 F.D.A. REVISED OUR HUMAN 3526 02:29:50,000 --> 02:29:51,920 SUBJECTS REGULATIONS TAKING INTO 3527 02:29:51,920 --> 02:29:53,560 ACCOUNT THAT FOUNDATION AND THE 3528 02:29:53,560 --> 02:29:54,400 PRESIDENT COMMISSION CALLED FOR 3529 02:29:54,400 --> 02:29:57,320 THE ADOPTION OF THESE 3530 02:29:57,320 --> 02:29:58,800 REGULATIONS BY ALL FEDERAL 3531 02:29:58,800 --> 02:30:00,120 AGENCIES AND CONDUCTING 3532 02:30:00,120 --> 02:30:00,520 RESEARCH. 3533 02:30:00,520 --> 02:30:04,800 SO IN 1991, WHICH IS ONE OF THE 3534 02:30:04,800 --> 02:30:06,480 COMMON RULES IS ADOPTED AND THEY 3535 02:30:06,480 --> 02:30:08,400 ADOPT THE COMMON RULE AND TODAY 3536 02:30:08,400 --> 02:30:09,800 THAT NUMBER IS 20 DEPARTMENTS IN 3537 02:30:09,800 --> 02:30:13,240 THE AGENCIES AND THE COMMONER 3538 02:30:13,240 --> 02:30:15,400 OUTLINES BASIC PROVISIONS FOR 3539 02:30:15,400 --> 02:30:17,200 IRBs AND INFORM CONSENT AND 3540 02:30:17,200 --> 02:30:21,280 ASSURANCE OF COMPLIANCE. 3541 02:30:21,280 --> 02:30:22,880 NOW, A COUPLE OF POINTS AND I 3542 02:30:22,880 --> 02:30:24,840 WANT TO START THIS OUT AND AT 3543 02:30:24,840 --> 02:30:26,280 NIH WE DON'T HAVE THE COMMON 3544 02:30:26,280 --> 02:30:28,280 RULE THAT IS OVER SEEN BY THE 3545 02:30:28,280 --> 02:30:29,800 HHS OFFICE FOR HUMAN PROTECTION 3546 02:30:29,800 --> 02:30:31,720 AND SO I'M JUST QUOTING IS 3547 02:30:31,720 --> 02:30:42,200 DIRECTLY IN THE TAX ITSELF AND 3548 02:30:47,840 --> 02:30:49,240 WHAT DOES THIS POLICY APPLY TO 3549 02:30:49,240 --> 02:30:50,680 AND I'LL GIVE YOU MY TAKE ON 3550 02:30:50,680 --> 02:30:57,880 THIS REALLY IS THAT, YOU KNOW, 3551 02:30:57,880 --> 02:31:03,080 IT'S AND IF YOU HAVE A TRIBAL 3552 02:31:03,080 --> 02:31:06,120 LAW PASSED BY THE BODY AND 3553 02:31:06,120 --> 02:31:08,160 AMERICAN AND ALASKA NATIVE 3554 02:31:08,160 --> 02:31:09,560 CHILDREN AND THERE'S NO GO ABOVE 3555 02:31:09,560 --> 02:31:13,160 AND BEYOND AND IT'S A MINIMUM. 3556 02:31:13,160 --> 02:31:23,640 ONE OF THE OTHER PIECES IS A 3557 02:32:05,800 --> 02:32:07,640 THERE HA HAS BEEN REQUIREMENT TO 3558 02:32:07,640 --> 02:32:09,760 HARMONIZATION AND BETWEEN THE 3559 02:32:09,760 --> 02:32:12,840 FDA REQUIREMENTS AND THE 3560 02:32:12,840 --> 02:32:14,280 COMMONWEALTH AND SO THE EXTENT 3561 02:32:14,280 --> 02:32:15,200 PRACTICE TICK ABLE AND THAT 3562 02:32:15,200 --> 02:32:18,800 COMES OUT OF THE THE 21 CENTS 3563 02:32:18,800 --> 02:32:19,560 RECURES ACT AND REQUIRING THIS 3564 02:32:19,560 --> 02:32:21,200 AND JUST RAISING TO NOTE THAT 3565 02:32:21,200 --> 02:32:25,160 FDA RECENTLY PUT OUT TO WE DON'T 3566 02:32:25,160 --> 02:32:28,040 OVERSEE THIS HERE AT NIH AND 3567 02:32:28,040 --> 02:32:29,040 WHERE THESE DIFFERENT 3568 02:32:29,040 --> 02:32:30,200 PROTECTIONS ARE AND I JUST 3569 02:32:30,200 --> 02:32:31,480 WANTED TO RAISE IT TO ALL OF YOU 3570 02:32:31,480 --> 02:32:34,040 TO MAKE YOU AWARE THAT THESE ARE 3571 02:32:34,040 --> 02:32:35,880 OUT THERE AND THEY'RE ALL-OUT 3572 02:32:35,880 --> 02:32:39,280 FOR PUBLIC COMMENT. 3573 02:32:39,280 --> 02:32:41,640 THERE'S A QUESTION THAT FDA 3574 02:32:41,640 --> 02:32:42,560 OPPOSED WHERE THEY'RE ASKING 3575 02:32:42,560 --> 02:32:44,680 WHETHER IT'S APPROPRIATE TO 3576 02:32:44,680 --> 02:32:46,560 RESEARCH FOR WHICH USE OF A 3577 02:32:46,560 --> 02:32:49,960 SINGLE IRB TO MEET THE NEEDS OF 3578 02:32:49,960 --> 02:32:51,040 THE SPECIFIC POPULATIONS. 3579 02:32:51,040 --> 02:32:52,800 THAT'S THE STATE OF THE CURRENT 3580 02:32:52,800 --> 02:32:56,000 RULE ITSELF AND I DID -- I DID 3581 02:32:56,000 --> 02:32:57,720 WANT TO SPEAK A LITTLE BIT MORE 3582 02:32:57,720 --> 02:32:58,760 SPECIFICALLY ABOUT THINGS THAT 3583 02:32:58,760 --> 02:33:01,000 WE HAVE GOING ON AT NIH AND IN 3584 02:33:01,000 --> 02:33:02,320 THIS CASE I WANT TO SHIFT OVER 3585 02:33:02,320 --> 02:33:05,040 TO SINGLE IRB HERE AS WE 3586 02:33:05,040 --> 02:33:06,680 IMPLEMENTED IT AND THE BENEFITS 3587 02:33:06,680 --> 02:33:09,880 THAT WE WERE LOOKING AT FOR THE 3588 02:33:09,880 --> 02:33:12,000 SINGLE IRB FOR RESEARCH IS 3589 02:33:12,000 --> 02:33:13,880 SINGLE IRB TO ENHANCE AND 3590 02:33:13,880 --> 02:33:17,280 STREAMLINE THE REVIEW PROCESS 3591 02:33:17,280 --> 02:33:19,120 AND NECESSARILY IRB REVIEW AND 3592 02:33:19,120 --> 02:33:22,760 IT COULD REDUCE ADMINISTRATIVE 3593 02:33:22,760 --> 02:33:24,680 BURDENS AND SYSTEMIC 3594 02:33:24,680 --> 02:33:25,960 INEFFICIENCIES IN THE PROCESS. 3595 02:33:25,960 --> 02:33:28,080 SO WE ACTUALLY DEVELOPED OUR 3596 02:33:28,080 --> 02:33:30,000 SINGLE IRB POLICY AND PUT IT OUT 3597 02:33:30,000 --> 02:33:33,200 IN DECEMBER OF 2014 AND THERE 3598 02:33:33,200 --> 02:33:34,400 WERE 167 COMMENTS RECEIVED ON 3599 02:33:34,400 --> 02:33:36,240 THIS AND FROM A WIDE RANGE OF 3600 02:33:36,240 --> 02:33:38,320 STAKEHOLDERS INCLUDING TRIBAL 3601 02:33:38,320 --> 02:33:39,920 NATION REPRESENTATIVES AND 3602 02:33:39,920 --> 02:33:42,080 TRIBAL NATION COMMENTERS AND 3603 02:33:42,080 --> 02:33:43,720 POINTED AND IMPORTANCE OF 3604 02:33:43,720 --> 02:33:45,720 FIRSTHAND KNOWLEDGE AND LOCAL 3605 02:33:45,720 --> 02:33:47,280 TRIBAL SYSTEMS AND CULTURAL 3606 02:33:47,280 --> 02:33:51,800 VALUES AND TRIBAL SENSITIVITIES 3607 02:33:51,800 --> 02:34:02,360 AND ALSO AND TO SEE THAT AS WELL 3608 02:34:30,080 --> 02:34:32,040 SO, WITH THAT I'M GOING TO TURN 3609 02:34:32,040 --> 02:34:34,520 THE TALK OVER TO Dr. HULL WHO 3610 02:34:34,520 --> 02:34:36,400 WILL TAKE US THROUGH MORE OF THE 3611 02:34:36,400 --> 02:34:38,120 CONTEMPORARY RESEARCH PROTECTION 3612 02:34:38,120 --> 02:34:39,200 AND AGAIN LIKE I SAID WE'LL BE 3613 02:34:39,200 --> 02:34:43,200 THROWING THIS BACK AND FOURTH TO 3614 02:34:43,200 --> 02:34:44,680 EACH OTHER. 3615 02:34:44,680 --> 02:34:45,840 ED THANK YOU FOR THIS DISCUSSION 3616 02:34:45,840 --> 02:34:47,320 AND IT'S REALLY JUST BEEN SUCH A 3617 02:34:47,320 --> 02:34:48,360 PLEASURE WORKING TOGETHER WITH 3618 02:34:48,360 --> 02:34:50,360 YOU AND YOUR TEAM AND THE NIH 3619 02:34:50,360 --> 02:34:52,040 OFFICE OF SCIENCE POLICY AND A 3620 02:34:52,040 --> 02:34:53,040 SUSTAINED WAY ON THE NUMBER OF 3621 02:34:53,040 --> 02:34:54,720 THE TOPICS THAT WE'RE TALKING 3622 02:34:54,720 --> 02:34:56,840 ABOUT TODAY. 3623 02:34:56,840 --> 02:34:58,000 AND THANK YOU ALL TO THE TECH 3624 02:34:58,000 --> 02:35:00,160 FOR THIS GENEROUS TIME SLOT ON 3625 02:35:00,160 --> 02:35:01,960 YOUR VERY FULL AGENDA. 3626 02:35:01,960 --> 02:35:03,000 NEXT SLIDE, PLEASE. 3627 02:35:03,000 --> 02:35:07,200 I WOULD LIKE TO START WITH A BIT 3628 02:35:07,200 --> 02:35:08,560 OF BACKGROUND FROM MY PART OF 3629 02:35:08,560 --> 02:35:10,600 THE PRESENTATION. 3630 02:35:10,600 --> 02:35:12,160 REALLY MY ENTIRE CAREER AT THE 3631 02:35:12,160 --> 02:35:16,840 NIH WAS INFLUENCED BY A VERY 3632 02:35:16,840 --> 02:35:22,560 UNIQUE EXPERIENCE. 3633 02:35:22,560 --> 02:35:24,200 FOR PRESIDENT CLINTON ADVISORY 3634 02:35:24,200 --> 02:35:26,280 COMMITTEE ON HUMAN RADIATION 3635 02:35:26,280 --> 02:35:26,840 EXPERIMENTS. 3636 02:35:26,840 --> 02:35:30,880 WHICH WAS CHARGED WITH TELLING 3637 02:35:30,880 --> 02:35:37,160 THE TRUTH ABOUT ALSO FOR 3638 02:35:37,160 --> 02:35:38,080 INSURING OUR CURRENT DAY 3639 02:35:38,080 --> 02:35:40,440 RESEARCH POLICIES AND PRACTICES 3640 02:35:40,440 --> 02:35:44,640 ARE ADEQUATE TO ENSURE WE DON'T 3641 02:35:44,640 --> 02:35:45,600 REPEAT THOSE MISTAKES OF THE 3642 02:35:45,600 --> 02:35:47,600 PAST AND THIS PHOTO, WHICH 3643 02:35:47,600 --> 02:35:48,560 UNFORTUNATELY, I GUESS WAS TAKEN 3644 02:35:48,560 --> 02:35:50,240 BEFORE SELFIE STICKS WERE 3645 02:35:50,240 --> 02:35:52,160 INCONVENIENTED, BUT IT SHOWS AT 3646 02:35:52,160 --> 02:35:53,320 LEAST HOW CHOSE I WAS SITTING TO 3647 02:35:53,320 --> 02:35:54,720 THE STAGE AT THE CEREMONY WHERE 3648 02:35:54,720 --> 02:35:56,360 THE FINAL REPORT WAS PRESENTED 3649 02:35:56,360 --> 02:35:58,600 TO PRESIDENT CLINTON AS WELL AS 3650 02:35:58,600 --> 02:36:05,480 TO ATTORNEY GENERAL JANET RENO 3651 02:36:05,480 --> 02:36:08,760 AND THEY WERE COMPREHENSIVE IN 3652 02:36:08,760 --> 02:36:11,080 THEIR DOCK TAKE OF RESEARCH THAT 3653 02:36:11,080 --> 02:36:13,800 HAD BEEN CONDUCTED INCLUDING 3654 02:36:13,800 --> 02:36:15,840 OBSERVATIONAL STUDIES MANY OF 3655 02:36:15,840 --> 02:36:18,640 WHOM WERE NAVAJO AS WELL AS 3656 02:36:18,640 --> 02:36:20,720 RADIOACTIVE IODINE AND ALASKA 3657 02:36:20,720 --> 02:36:21,400 NATIVE PEOPLE. 3658 02:36:21,400 --> 02:36:23,320 MY OWN PERSONAL ROLE WAS FOCUSED 3659 02:36:23,320 --> 02:36:25,000 ON THE PREP DAY CONTEXT OF 3660 02:36:25,000 --> 02:36:27,000 RESEARCH REGULATIONS AND OF 3661 02:36:27,000 --> 02:36:28,080 RESEARCH PARTICIPANTS 3662 02:36:28,080 --> 02:36:30,240 EXPERIENCES BUT I THINK THAT THE 3663 02:36:30,240 --> 02:36:32,680 MOST STRIKING THING ABOUT THAT 3664 02:36:32,680 --> 02:36:34,240 DAY AND THAT PROBABLY 3665 02:36:34,240 --> 02:36:36,160 CHARACTERIZES MY ENTIRE 3666 02:36:36,160 --> 02:36:39,080 EXPERIENCE, NEXT SLIDE, PLEASE, 3667 02:36:39,080 --> 02:36:41,640 WAS HEARING PRESIDENT CLINTON 3668 02:36:41,640 --> 02:36:43,160 APOLOGIZE AND TAKE 3669 02:36:43,160 --> 02:36:47,360 RESPONSIBILITY ON BEHALF OF THE 3670 02:36:47,360 --> 02:36:56,440 FEDERAL GOVERNMENT AND A FUTURE 3671 02:36:56,440 --> 02:36:57,960 OF THE GOVERNMENT AND NEXT 3672 02:36:57,960 --> 02:36:59,000 SLIDE, THIS PROVIDED A BLUE 3673 02:36:59,000 --> 02:37:00,920 PRINT FOR THE APOLOGY HE OFFERED 3674 02:37:00,920 --> 02:37:02,000 A FEW YEARS LATER TO THE BLACK 3675 02:37:02,000 --> 02:37:03,520 MEN WOULD WERE THE VICTIMS OF 3676 02:37:03,520 --> 02:37:05,440 THE U.S. PUBLIC-HEALTH SERVICE 3677 02:37:05,440 --> 02:37:08,080 STUDY OF SYPHILIS COMMONLY 3678 02:37:08,080 --> 02:37:16,480 REFERRED TO AS THE TUSEXPERIMENT 3679 02:37:16,480 --> 02:37:18,960 AND IT WAS EARLY IN MY CAREER 3680 02:37:18,960 --> 02:37:20,760 THIS IDEA OF HOLDING THE 3681 02:37:20,760 --> 02:37:22,200 GOVERNMENT ACCOUNTABLE FOR WHAT 3682 02:37:22,200 --> 02:37:23,840 IT HOLDS THE PEOPLE FOR WHAT IT 3683 02:37:23,840 --> 02:37:26,200 IT SERVES AND THIS IS WHAT I'VE 3684 02:37:26,200 --> 02:37:27,000 CARRIED AT THE NIH. 3685 02:37:27,000 --> 02:37:30,560 I STARTED WORKING HERE AROUND 3686 02:37:30,560 --> 02:37:34,680 991999 AND ALTHOUGH MY 3687 02:37:34,680 --> 02:37:35,760 APPOINTMENTS HAVE SHIFTED AROUND 3688 02:37:35,760 --> 02:37:39,800 A BIT OVER THE YEARS, I'VE HAD A 3689 02:37:39,800 --> 02:37:42,480 JOINT ARRANGEMENT IN PARALLEL 3690 02:37:42,480 --> 02:37:46,720 WITH IRB RELATED SERVICE AND 3691 02:37:46,720 --> 02:37:48,320 TRAINING AS WELL AS BIOETHICS 3692 02:37:48,320 --> 02:37:50,120 RESEARCH THAT MOSTLY HAS FOCUSED 3693 02:37:50,120 --> 02:37:52,840 ON ETHICAL ISSUES IN GENETICS 3694 02:37:52,840 --> 02:37:56,600 RESEARCH AT LEAST IN THE 3695 02:37:56,600 --> 02:37:56,880 BEGINNING. 3696 02:37:56,880 --> 02:37:59,000 AND THE TRAINING AND CAPACITY 3697 02:37:59,000 --> 02:38:01,800 BUILDING WORK IN RESEARCH ETHICS 3698 02:38:01,800 --> 02:38:03,360 BEGAN MORE WITH THE FOCUS ON 3699 02:38:03,360 --> 02:38:05,040 SUPPORTING LOW AND MIDDLE INCOME 3700 02:38:05,040 --> 02:38:09,680 COUNTRY AND IT SHIFTED TO 3701 02:38:09,680 --> 02:38:10,360 INCLUDE COMMUNITIES IN THE 3702 02:38:10,360 --> 02:38:11,800 UNITED STATES AND AS I LEARNED 3703 02:38:11,800 --> 02:38:13,120 ABOUT TRIBAL SOVEREIGNTY AND 3704 02:38:13,120 --> 02:38:15,480 TRIBAL IRBs AND THE PERSIST 3705 02:38:15,480 --> 02:38:17,120 APARTMENT HISTORY OF UNETHICAL 3706 02:38:17,120 --> 02:38:18,400 RESEARCH WITH NATIVE COMMUNITIES 3707 02:38:18,400 --> 02:38:23,560 AND MY WORK GRADUALLY SHIFTED TO 3708 02:38:23,560 --> 02:38:26,360 FOCUS ON THAT CONTEXT. 3709 02:38:26,360 --> 02:38:29,200 AND TO THIS AMAZING TEAM THAT 3710 02:38:29,200 --> 02:38:29,920 I'VE BEEN ABLE TO JOIN THE 3711 02:38:29,920 --> 02:38:30,840 TRIBAL HEALTH RESEARCH OFFICE 3712 02:38:30,840 --> 02:38:33,720 OVER THE PAST YEAR-AND-A-HALF ON 3713 02:38:33,720 --> 02:38:36,520 DETAIL TO MAKE INNS INTENSE GOOD 3714 02:38:36,520 --> 02:38:37,440 PROGRESS ON INITIATIVES THAT 3715 02:38:37,440 --> 02:38:40,040 WE'VE BEEN WORKING COLLABORATIVE 3716 02:38:40,040 --> 02:38:42,080 TOGETHER ON FOR SOME TIME. 3717 02:38:42,080 --> 02:38:44,520 SO THAT BRINGS ME TO 2016, NEXT 3718 02:38:44,520 --> 02:38:45,120 SLIDE, PLEASE. 3719 02:38:45,120 --> 02:38:47,000 AND THE FIRST TIME I WAS INVITED 3720 02:38:47,000 --> 02:38:48,440 TO PRESENT TO THE TRIBAL 3721 02:38:48,440 --> 02:38:50,320 ADVISORY COMMITTEE, TO GET YOUR 3722 02:38:50,320 --> 02:38:54,920 INPUT ON SOME NEW AND EMERGING 3723 02:38:54,920 --> 02:38:56,600 TRAINING OPPORTUNITIES THAT I 3724 02:38:56,600 --> 02:38:58,480 AND OTHERS WERE COLLABORATING ON 3725 02:38:58,480 --> 02:39:01,320 AND YOU CAN SEE MY WONDERFUL 3726 02:39:01,320 --> 02:39:02,840 COLLEAGUE, WHO WAS AT IHS AT THE 3727 02:39:02,840 --> 02:39:04,720 TIME WAS ALSO AT THE TABLE. 3728 02:39:04,720 --> 02:39:07,880 AND NEXT SLIDE, WE TOOK THE TEXT 3729 02:39:07,880 --> 02:39:09,800 FEEDBACK AND ENCOURAGEMENT SER 3730 02:39:09,800 --> 02:39:12,240 OBVIOUSLY AND MOVED NUMBER WITH 3731 02:39:12,240 --> 02:39:13,800 COLLABORATIVE INITIATIVES AND WE 3732 02:39:13,800 --> 02:39:15,560 HELD THIS VERY SUCCESSFUL FULL 3733 02:39:15,560 --> 02:39:17,080 DAY BIG CONFERENCE WORKSHOP AT 3734 02:39:17,080 --> 02:39:20,120 THE NATIVE WORKSHOP MEETING IN 3735 02:39:20,120 --> 02:39:21,880 CHEROKEE NORTH CAROLINA AND IT 3736 02:39:21,880 --> 02:39:23,760 WAS IN-DEPTH INTO THE ROLES AND 3737 02:39:23,760 --> 02:39:25,320 FUNCTIONS OF DIFFERENT MODEL OF 3738 02:39:25,320 --> 02:39:27,080 TRIBAL IRBs AND RESEARCH 3739 02:39:27,080 --> 02:39:30,680 OVERSIGHT MECHANISMS AND TOOL 3740 02:39:30,680 --> 02:39:33,240 KITS, VARIOUS ETHICAL 3741 02:39:33,240 --> 02:39:34,320 FRAMEWORKS, PEACE STUDIES AND IT 3742 02:39:34,320 --> 02:39:35,760 WAS ORGANIZED BY A TEAM OF 3743 02:39:35,760 --> 02:39:39,560 PEOPLE FROM THE NIH AND THE 3744 02:39:39,560 --> 02:39:43,120 PERKA PROGRAM, NCAI. 3745 02:39:43,120 --> 02:39:44,760 THE MAJORITY WERE AMERICAN 3746 02:39:44,760 --> 02:39:46,200 INDIAN AND ALASKA NATIVE 3747 02:39:46,200 --> 02:39:47,680 RESEARCHERS AND IT DEMONSTRATED 3748 02:39:47,680 --> 02:39:49,880 THAT THERE REALLY WAS A STRONG 3749 02:39:49,880 --> 02:39:51,080 INTEREST IN AND NEED FOR THIS 3750 02:39:51,080 --> 02:39:54,000 KIND OF CONTENT AND THAT 3751 02:39:54,000 --> 02:39:55,080 LAUNCHED A NEXT SLIDE. 3752 02:39:55,080 --> 02:39:58,840 THAT WAS AN ONGOING AND OF A 3753 02:39:58,840 --> 02:40:00,480 PROFESSIONAL ORGANIZATION THAT 3754 02:40:00,480 --> 02:40:02,760 STANDS FOR PROFESSIONAL 3755 02:40:02,760 --> 02:40:03,920 RESPONSIBILITY IN MEDICINE AND 3756 02:40:03,920 --> 02:40:05,080 RESEARCH AND I WOULD 3757 02:40:05,080 --> 02:40:06,760 CHARACTERIZE THEM AS ONE OF THE 3758 02:40:06,760 --> 02:40:08,000 LEADING PROFESSIONAL 3759 02:40:08,000 --> 02:40:10,680 ORGANIZATIONS FOR ALL ASPECTS OF 3760 02:40:10,680 --> 02:40:12,000 IRB RELATED WORK. 3761 02:40:12,000 --> 02:40:13,920 SO THIS COLLABORATION HAS 3762 02:40:13,920 --> 02:40:17,560 ALLOWED US TO DEVELOP CONTENT 3763 02:40:17,560 --> 02:40:18,720 THAT THEY HAVE BEEN WILLING TO 3764 02:40:18,720 --> 02:40:20,480 MAKE FREELY AVAILABLE TO THE 3765 02:40:20,480 --> 02:40:22,120 RESEARCH COMMUNITIES TO ADDRESS 3766 02:40:22,120 --> 02:40:24,400 TIMELY AND EMERGING POLICY 3767 02:40:24,400 --> 02:40:26,680 ISSUES OF RELEVANCE TO THE 3768 02:40:26,680 --> 02:40:28,200 TRIBAL COMMUNITIES SUCH AS, THE 3769 02:40:28,200 --> 02:40:31,720 EMERGING SINGLE IRB POLICY RIGHT 3770 02:40:31,720 --> 02:40:34,080 AROUND THE TIME, I THINK IT WAS 3771 02:40:34,080 --> 02:40:35,960 IN ADVANCE OF THE 2018 COMMON 3772 02:40:35,960 --> 02:40:37,480 RULE REVISIONS THAT Dr. BERGER 3773 02:40:37,480 --> 02:40:39,240 WAS REFERRING TO. 3774 02:40:39,240 --> 02:40:40,920 AND WHERE WE HAVE AN UPCOMING 3775 02:40:40,920 --> 02:40:41,960 WEBINAR THAT WE'RE NOT IN THE 3776 02:40:41,960 --> 02:40:45,760 WEEKENDS OF PLANNING ON THE NIH 3777 02:40:45,760 --> 02:40:48,720 DATA SHARING POLICY AND TABLE 3778 02:40:48,720 --> 02:40:51,680 AND WE HEARD FROM Dr. BERGER 3779 02:40:51,680 --> 02:40:53,840 WILL SAY MORE IN A MOMENT ABOUT 3780 02:40:53,840 --> 02:40:54,040 THAT. 3781 02:40:54,040 --> 02:40:54,880 NEXT SLIDE. 3782 02:40:54,880 --> 02:40:57,560 IT WAS ALSO, I THINK, VERY 3783 02:40:57,560 --> 02:40:59,880 EXCITING AT THE 2017, I THINK IT 3784 02:40:59,880 --> 02:41:02,160 WAS, ANNUAL MEETING TO HAVE A 3785 02:41:02,160 --> 02:41:03,520 PLENARY SESSION ON THE ROLE OF 3786 02:41:03,520 --> 02:41:05,840 TRIBAL SOVEREIGNTY AND RESEARCH 3787 02:41:05,840 --> 02:41:07,640 AND SO THIS PHOTOGRAPH OF PAP 3788 02:41:07,640 --> 02:41:12,760 EAPANELISTS AND PARTICIPANTS ISA 3789 02:41:12,760 --> 02:41:13,880 SNAPSHOT OF THE REPRESENTATIVES 3790 02:41:13,880 --> 02:41:16,400 OF THE DIFFERENT MODEL OF TRIBAL 3791 02:41:16,400 --> 02:41:18,720 IRBs, TRIBAL COLLEGES, TRIBAL 3792 02:41:18,720 --> 02:41:19,800 GOVERNMENTS AND THIS WAS 3793 02:41:19,800 --> 02:41:22,840 ADDRESSING A VERY DIFFERENT AND 3794 02:41:22,840 --> 02:41:24,360 MUCH BROADER NATIVE AUDIENCE 3795 02:41:24,360 --> 02:41:26,400 COMPARED TO THE NRN WORKSHOP 3796 02:41:26,400 --> 02:41:32,480 THAT I MENTIONED. 3797 02:41:32,480 --> 02:41:34,040 IN ADDITION TO BRINGING THIS 3798 02:41:34,040 --> 02:41:35,280 MESSAGE, THESE MESSAGES TO A 3799 02:41:35,280 --> 02:41:37,920 BROADER RANGE OF AUDIENCES, 3800 02:41:37,920 --> 02:41:39,920 WE'VE ALSO BEEN WORKING ON 3801 02:41:39,920 --> 02:41:40,720 REFINING THE MESSAGE ITSELF AND 3802 02:41:40,720 --> 02:41:51,160 THESE ARE SCREEN SHOTS. 3803 02:41:55,440 --> 02:41:56,720 AND SOME OVER SIMPLIFICATIONS 3804 02:41:56,720 --> 02:41:57,880 WE'VE SEEN IN THE USE OF 3805 02:41:57,880 --> 02:42:00,920 FAMILIAR CASES, FOR EXAMPLE, I 3806 02:42:00,920 --> 02:42:03,400 TAKE SERIOUSLY FEEDBACK I'VE 3807 02:42:03,400 --> 02:42:04,280 RECEIVED FROM TRIBAL LEADERS, 3808 02:42:04,280 --> 02:42:05,520 THAT WHEN WE'RE TALKING ABOUT 3809 02:42:05,520 --> 02:42:06,840 ETHICS CASES WE REALLY NEED TO 3810 02:42:06,840 --> 02:42:08,760 BE CAREFUL ABOUT HOW WE REFER TO 3811 02:42:08,760 --> 02:42:11,280 THEM AND HOW WE NAME THEM. 3812 02:42:11,280 --> 02:42:12,680 SO THAT WE SEE DON'T PERPETUATE 3813 02:42:12,680 --> 02:42:14,320 THE SIGNA ATTACHED TO THEM SO 3814 02:42:14,320 --> 02:42:15,640 YOU MIGHT HAVE NOTICED THAT I 3815 02:42:15,640 --> 02:42:17,400 MADE A POINT OF REFERRING O THE 3816 02:42:17,400 --> 02:42:19,560 U.S. PUBLIC-HEALTH SERVICE STUDY 3817 02:42:19,560 --> 02:42:20,880 EARLIER AND I ALSO MAKE A POINT 3818 02:42:20,880 --> 02:42:27,600 OF REFERRING TO THE ARIZONA 3819 02:42:27,600 --> 02:42:28,640 STATE UNIVERSITY CASE. 3820 02:42:28,640 --> 02:42:39,160 AND THAT HELPS TO REFRAME THE 3821 02:42:48,040 --> 02:42:49,160 THE MISUNDERSTANDING OF ROLE OF 3822 02:42:49,160 --> 02:42:51,160 CONSENT AND ADEQUACY OF BROAD 3823 02:42:51,160 --> 02:42:53,440 CONSENT FOR RESEARCH ON SAMPLES 3824 02:42:53,440 --> 02:42:55,800 COLLECTED FROM THE TRIBAL 3825 02:42:55,800 --> 02:42:57,320 MEMBERS THAT THEY HAD 3826 02:42:57,320 --> 02:42:58,600 SPECIFICALLY REQUESTED TO USE 3827 02:42:58,600 --> 02:43:00,160 FOR TYPE-2 DIABETES AND WENT ON 3828 02:43:00,160 --> 02:43:03,080 TO BE USED FOR MANY OTHER 3829 02:43:03,080 --> 02:43:06,360 RESEARCH TOPICS AND THAT WERE 3830 02:43:06,360 --> 02:43:08,480 HARMFUL TO THEIR INTERESTS. 3831 02:43:08,480 --> 02:43:10,720 BUT THESE CASES ALSO RAISE VERY 3832 02:43:10,720 --> 02:43:12,280 IMPORTANT QUESTIONS AND BROADER 3833 02:43:12,280 --> 02:43:14,680 QUESTIONS OF EQUITY AND JUSTICE 3834 02:43:14,680 --> 02:43:15,720 CONSIDERATIONS AND HOW DO WE 3835 02:43:15,720 --> 02:43:18,720 THINK ABOUT THOSE. 3836 02:43:18,720 --> 02:43:23,320 WE WERE ALSO MINDFUL OF FLIPPING 3837 02:43:23,320 --> 02:43:24,720 THE SCRIPT FOR SUCCESSFUL 3838 02:43:24,720 --> 02:43:26,600 COLLABORATION AND TRUST BUILDING 3839 02:43:26,600 --> 02:43:28,840 LOOKS LIKE WHICH THEY DID A 3840 02:43:28,840 --> 02:43:31,920 BRILLIANT JOB OF. 3841 02:43:31,920 --> 02:43:32,440 NEXT SLIDE. 3842 02:43:32,440 --> 02:43:33,960 I JUST WANT TO QUICKLY MAKE SURE 3843 02:43:33,960 --> 02:43:36,200 YOU ARE AWARE OF SOME ADDITIONAL 3844 02:43:36,200 --> 02:43:37,480 SOURCES OF NIH SUPPORT FOR 3845 02:43:37,480 --> 02:43:41,400 TRIBAL IRWs AND I BELIEVE THE 3846 02:43:41,400 --> 02:43:43,720 TAC HAS HEARD ABOUT THE 3847 02:43:43,720 --> 02:43:46,480 EVALUATION OF THE NARCH PROGRAM 3848 02:43:46,480 --> 02:43:46,760 UNDERTAKEN. 3849 02:43:46,760 --> 02:43:48,360 I KNOW DR. TABAK MENTIONED IT IN 3850 02:43:48,360 --> 02:43:50,240 HIS COMMENTS EARLIER TODAY. 3851 02:43:50,240 --> 02:43:52,600 ONE OF THE IMPORTANT MESSAGES 3852 02:43:52,600 --> 02:43:55,160 RECEIVED WAS ABOUT PROVIDING 3853 02:43:55,160 --> 02:43:57,880 TANGIBLE SUPPORT FOR -- 3854 02:43:57,880 --> 02:44:00,960 FINANCIAL SUPPORT TO TRIBAL 3855 02:44:00,960 --> 02:44:02,400 IRBs FOR INFRASTRUCTURE AND 3856 02:44:02,400 --> 02:44:05,120 JUST LAST MONTH, I WAS ABLE TO 3857 02:44:05,120 --> 02:44:06,760 SIT INTO WATCH TO OBSERVE A 3858 02:44:06,760 --> 02:44:09,240 PUBLIC MEETING OF THE NIGMS 3859 02:44:09,240 --> 02:44:11,200 COUNCIL THAT WAS REQUESTING 3860 02:44:11,200 --> 02:44:12,840 CONCEPT CLEARANCE FOR SOME 3861 02:44:12,840 --> 02:44:13,680 FOURTH COMING FUNDING 3862 02:44:13,680 --> 02:44:14,640 OPPORTUNITIES THAT WE CAN BE ON 3863 02:44:14,640 --> 02:44:15,920 THE LOOK OUT FOR. 3864 02:44:15,920 --> 02:44:20,480 AND THERE ARE ALSO OTHER BOLDER 3865 02:44:20,480 --> 02:44:22,480 MATERIALS CHECKLISTS AND COOL 3866 02:44:22,480 --> 02:44:24,320 KITS SUCH AS THE ONE HERE THAT 3867 02:44:24,320 --> 02:44:27,960 FOLKS MIGHT HAVE FOUND HELPFUL. 3868 02:44:27,960 --> 02:44:30,200 AND I DO THINK IT'S IMPORTANT TO 3869 02:44:30,200 --> 02:44:32,800 VIEW ETHICS TRAINING AND 3870 02:44:32,800 --> 02:44:34,360 CAPACITY BUILDING BOTH OUTWARD 3871 02:44:34,360 --> 02:44:37,600 PHASING ACTIVITIES BUT ALSO, IN 3872 02:44:37,600 --> 02:44:39,200 WARD FACING CAPACITY BUILDING 3873 02:44:39,200 --> 02:44:40,720 ACTIVITIES AND WE NEED TO TURN 3874 02:44:40,720 --> 02:44:42,360 THE MIRROR IT'S THE MICROSCOPE 3875 02:44:42,360 --> 02:44:44,200 AS SOME OF MY SCIENCE COLLEAGUES 3876 02:44:44,200 --> 02:44:47,600 LIKE TO SAY ON OURSELVES. 3877 02:44:47,600 --> 02:44:50,880 THIS HAVE BEEN A LOT OF EFFORTS 3878 02:44:50,880 --> 02:44:52,640 WITHIN OUR INTRAMURAL RESEARCH 3879 02:44:52,640 --> 02:44:54,440 PROGRAM AND THIS IS THE RESEARCH 3880 02:44:54,440 --> 02:44:56,200 THAT TAKES PLACE ON CAMPUS IN 3881 02:44:56,200 --> 02:44:58,440 OUR RESEARCH AND HOSPITAL WITH 3882 02:44:58,440 --> 02:45:01,720 OUR OWN RESEARCH BASED ON STAFF 3883 02:45:01,720 --> 02:45:03,720 TO AUGMENT THE STANDARD CITY AND 3884 02:45:03,720 --> 02:45:05,800 OTHER ON-LINE RESEARCH ETHICS 3885 02:45:05,800 --> 02:45:07,360 TRAINING MODULES THAT EACH AND 3886 02:45:07,360 --> 02:45:09,000 EVERY INVESTIGATOR, WHO 3887 02:45:09,000 --> 02:45:12,200 CONDUCTED HUMAN SUBJECTS REHAS 3888 02:45:12,200 --> 02:45:14,320 TO COMPLETE. 3889 02:45:14,320 --> 02:45:16,520 SO FOR EXAMPLE, THIS THE THIRD 3890 02:45:16,520 --> 02:45:17,720 YEAR THAT WE'VE BEEN VERY 3891 02:45:17,720 --> 02:45:19,640 FORTUNATE TO HAVE Dr. KATRINA 3892 02:45:19,640 --> 02:45:23,840 CLAW, A NATIVE BIO ETH SIS 3893 02:45:23,840 --> 02:45:24,920 COLLEAGUE PARTICIPATE IN THE 3894 02:45:24,920 --> 02:45:26,480 GUEST LECTURE ON THE TOPIC OF 3895 02:45:26,480 --> 02:45:27,880 INCLUSION OF NATIVE POPULATIONS 3896 02:45:27,880 --> 02:45:29,360 IN RESEARCH AND OF COURSE THAT'S 3897 02:45:29,360 --> 02:45:31,120 OFFERED ANNUALLY BY OUR CLINICAL 3898 02:45:31,120 --> 02:45:34,000 CENTERS DEPARTMENT OF BIOETHICS 3899 02:45:34,000 --> 02:45:37,280 AND Dr. WILSON AND I WERE I AM 3900 02:45:37,280 --> 02:45:44,000 INVITED LASTINVITED BY THE NIH , 3901 02:45:44,000 --> 02:45:46,520 OHSRP, NOT TO BE CONFUSED WITH 3902 02:45:46,520 --> 02:45:48,600 OHRP TO GIVE A PRESENTATION TO 3903 02:45:48,600 --> 02:45:50,360 THE ENTIRE NIH COMMUNITY THAT 3904 02:45:50,360 --> 02:45:52,040 WAS FRAMED FOR OUR INTRAMURAL 3905 02:45:52,040 --> 02:45:53,640 COLLEAGUES BUT WE HAD MANY WHO 3906 02:45:53,640 --> 02:45:55,120 WERE EXTRAMURAL STAFF AS WELL 3907 02:45:55,120 --> 02:45:58,480 AND THIS WAS REALLY TO MAKE SURE 3908 02:45:58,480 --> 02:45:59,920 OUR COLLEAGUES UNDERSTAND WHAT 3909 02:45:59,920 --> 02:46:02,160 TRIBAL SOVEREIGNTY AND THE 3910 02:46:02,160 --> 02:46:03,960 HISTORICAL CONTEXT AND WHAT OUR 3911 02:46:03,960 --> 02:46:05,240 PARTICULAR OBLIGATIONS IS A 3912 02:46:05,240 --> 02:46:06,400 FEDERAL AGENCY ARE AND HOW THAT 3913 02:46:06,400 --> 02:46:07,920 RELATES TO THE ETHICAL OVERSIGHT 3914 02:46:07,920 --> 02:46:10,160 OF THE TRIBAL RESEARCH THAT WE 3915 02:46:10,160 --> 02:46:14,040 CONDUCT IN THE INTRAMURAL 3916 02:46:14,040 --> 02:46:15,040 RESEARCH PROGRAM. 3917 02:46:15,040 --> 02:46:17,120 I ALSO I ALLUDED TO THIS 3918 02:46:17,120 --> 02:46:19,600 EARLIER, WE'VE RECENTLY ADDED A 3919 02:46:19,600 --> 02:46:21,760 CHECKLIST TO OUR INTRAMURAL IRB 3920 02:46:21,760 --> 02:46:24,000 APPLICATION FORM TO MAKE SURE 3921 02:46:24,000 --> 02:46:26,480 THAT OUR INTRAMURAL IRB OF WHICH 3922 02:46:26,480 --> 02:46:29,120 I SERVE AS ONE OF THE CHAIRS, TA 3923 02:46:29,120 --> 02:46:31,240 WE KNOW THAT OUR WHOLE GROUP, 3924 02:46:31,240 --> 02:46:32,680 OUR WHOLE TEAM KNOWS WHEN ONE OF 3925 02:46:32,680 --> 02:46:34,720 OUR OWN RESEARCHERS IS PROPOSING 3926 02:46:34,720 --> 02:46:37,200 TO DO TRIBAL RESEARCH SO WE CAN 3927 02:46:37,200 --> 02:46:38,680 PAUSE TO ENSURE THE APPROPRIATE 3928 02:46:38,680 --> 02:46:41,560 LEVEL OF TRIBAL REVIEW, HAS 3929 02:46:41,560 --> 02:46:43,000 TAKEN PLACE. 3930 02:46:43,000 --> 02:46:45,560 AND YOU KNOW, I DO WANT TO MAKE 3931 02:46:45,560 --> 02:46:47,320 CLEAR THIS IS LIMITED. 3932 02:46:47,320 --> 02:46:49,400 THIS PERTAINS TO THE INTRAMURAL 3933 02:46:49,400 --> 02:46:50,600 RESEARCH PROGRAM BUT I'M ALWAYS 3934 02:46:50,600 --> 02:46:52,240 THINKING ABOUT HOW WE COMPARE 3935 02:46:52,240 --> 02:46:53,680 NOTES WITH OUR EXTRAMURAL 3936 02:46:53,680 --> 02:46:56,480 COLLEAGUES AND THIS IS WHERE OUR 3937 02:46:56,480 --> 02:46:58,040 PARTNERSHIP WITH OTHERS WILL 3938 02:46:58,040 --> 02:46:59,600 ALLOW US TO SHARE BEST PRACTICES 3939 02:46:59,600 --> 02:47:02,240 AND RESOURCES THAT ARE WORKING 3940 02:47:02,240 --> 02:47:06,080 WITHIN THE BROADER RESEARCH NOT 3941 02:47:06,080 --> 02:47:07,280 COMMUNITY. 3942 02:47:07,280 --> 02:47:08,840 LET ME NOW HAND THE MIC BACK TO 3943 02:47:08,840 --> 02:47:11,640 Dr. BERGER FOR THE NEXT 3944 02:47:11,640 --> 02:47:11,880 SECTION. 3945 02:47:11,880 --> 02:47:14,480 >>THANK YOU, Dr. HULL. 3946 02:47:14,480 --> 02:47:17,960 I WANT TO TO, HARK INBACK FROM E 3947 02:47:17,960 --> 02:47:19,560 HISTORICAL REVIEW WHICH IS THAT 3948 02:47:19,560 --> 02:47:20,920 CONCEPT OF INFORMED CONSENT SO 3949 02:47:20,920 --> 02:47:21,960 THAT'S WHERE WE'RE GOING TO HEAD 3950 02:47:21,960 --> 02:47:22,920 THE DIRECTION NOW. 3951 02:47:22,920 --> 02:47:24,600 IT'S GETTING HOW CONSENT IS 3952 02:47:24,600 --> 02:47:25,880 DEVELOPED AND WHAT ARE THE 3953 02:47:25,880 --> 02:47:26,840 REQUIREMENTS AND YOU KNOW, 3954 02:47:26,840 --> 02:47:28,720 AGAIN, JUST A REMINDER, WE DON'T 3955 02:47:28,720 --> 02:47:30,720 OVERSEE THE COMMON RULE HERE AT 3956 02:47:30,720 --> 02:47:33,200 NIH AND THAT'S OVER SEEN BY HHS, 3957 02:47:33,200 --> 02:47:34,840 SO I'M JUST LISTENING WHERE 3958 02:47:34,840 --> 02:47:36,080 THOSE REQUIREMENT RIGHT SIDE AND 3959 02:47:36,080 --> 02:47:41,760 THE COMMODITIES ITSELF IS UNDER 3960 02:47:41,760 --> 02:47:42,800 116 WITH SIX GENERAL 3961 02:47:42,800 --> 02:47:44,360 REQUIREMENTS AND NINE ELEMENTS 3962 02:47:44,360 --> 02:47:45,720 OF THE INFORMED CONSENT AND I'M 3963 02:47:45,720 --> 02:47:47,320 NOT GOING TO GO OVER THEM 3964 02:47:47,320 --> 02:47:48,480 SPECIFICALLY BUT WE'LL JUST NOTE 3965 02:47:48,480 --> 02:47:50,280 THE PURPOSE IS REALLY TO ENSURE 3966 02:47:50,280 --> 02:47:52,160 THAT A PRO RESPECT OF RESEARCH 3967 02:47:52,160 --> 02:47:53,400 PARTICIPANTS HAS THE INFORMATION 3968 02:47:53,400 --> 02:47:54,840 THAT A REASONABLE PERSON WOULD 3969 02:47:54,840 --> 02:47:56,240 WANT TO HAVE TO MAKE A DECISION 3970 02:47:56,240 --> 02:47:58,400 ON WHETHER THEY WANT TO 3971 02:47:58,400 --> 02:48:01,000 PARTICIPATE IN A STUDY OR NOT. 3972 02:48:01,000 --> 02:48:02,840 IN ADDITION TO INFORMED CONSENT 3973 02:48:02,840 --> 02:48:04,440 THERE'S ALSO AN ALTERNATIVE 3974 02:48:04,440 --> 02:48:05,920 CONSENT PROCESS WHICH IS A FRAUD 3975 02:48:05,920 --> 02:48:07,440 CONTENT AND NOW THE THING TO BE 3976 02:48:07,440 --> 02:48:08,760 AWARE OF HERE, THIS IS ALL LAID 3977 02:48:08,760 --> 02:48:11,480 OUT IN THE COMMON RULE AGAIN, 3978 02:48:11,480 --> 02:48:13,120 IT'S THE BROAD CONSENT ATTAINING 3979 02:48:13,120 --> 02:48:15,720 MOVING FORWARD CONSENT BUT ONLY 3980 02:48:15,720 --> 02:48:17,280 FOR STORES AND SECONDARY 3981 02:48:17,280 --> 02:48:19,600 RESEARCH USES OF IDENTIFIABLE 3982 02:48:19,600 --> 02:48:22,160 DATA AND BIOSPECIMENS. 3983 02:48:22,160 --> 02:48:24,280 SO, THIS IS WHERE THE BROAD 3984 02:48:24,280 --> 02:48:28,200 FRAMING AROUND CONSENT COMES 3985 02:48:28,200 --> 02:48:37,200 FROM AND AND IT'S WHY I'M 3986 02:48:37,200 --> 02:48:39,200 WINNING THE AND CONTEMPLATED AS 3987 02:48:39,200 --> 02:48:43,320 PART OF THE GDS POLICY AND THE 3988 02:48:43,320 --> 02:48:45,480 GDS POLICY IS RESEARCH 3989 02:48:45,480 --> 02:48:49,440 GENERATING LARGE-SCALE HUMAN OR 3990 02:48:49,440 --> 02:48:50,320 NON HUMAN GENOMIC DATA USING 3991 02:48:50,320 --> 02:48:52,320 THESE DATA AND THE IDEAS IT 3992 02:48:52,320 --> 02:48:53,440 ENSURES BROAD RESPONSIBLE AND 3993 02:48:53,440 --> 02:48:54,720 TIMELY SHARING GENOMIC DATA AND 3994 02:48:54,720 --> 02:48:55,800 IT WAS DEVELOPED THROUGH 3995 02:48:55,800 --> 02:48:56,760 EXTENSIVE STAKEHOLDER 3996 02:48:56,760 --> 02:49:04,560 INCOMPETEINCOMSTAKE HOLDINTERAC. 3997 02:49:04,560 --> 02:49:08,480 THIS IS AN EXPECTATION THAT IRB 3998 02:49:08,480 --> 02:49:09,640 REVIEW AND IT DETERMINES WHETHER 3999 02:49:09,640 --> 02:49:10,840 IT'S APPROPRIATE FOR DATA IS 4000 02:49:10,840 --> 02:49:14,640 SHARED OR SECONDARY RESEARCH IS 4001 02:49:14,640 --> 02:49:25,160 GOING TO BE ACCOMPLISHED AND AND 4002 02:49:26,120 --> 02:49:29,920 I ALSO EXPECT AND GENOMIC AND 4003 02:49:29,920 --> 02:49:31,800 FUTURE RESEARCH PURPOSES AND 4004 02:49:31,800 --> 02:49:35,680 THAT IS TRUE EVEN IF CELL LINES 4005 02:49:35,680 --> 02:49:38,960 DEIDENTIFIED AND THIS IS THE 4006 02:49:38,960 --> 02:49:41,160 COMMON AND CELL LINE IS SUBJECT 4007 02:49:41,160 --> 02:49:43,880 TO RESEARCH AND WE ARE UNDER THE 4008 02:49:43,880 --> 02:49:48,320 POLICY REQUIRE HAVE THAT 4009 02:49:48,320 --> 02:49:50,680 EXPECTATION. 4010 02:49:50,680 --> 02:49:53,280 WE HAVE A COUPLE OF ADDITIONAL 4011 02:49:53,280 --> 02:49:57,280 RESOURCES AND AWARENESS FOR 4012 02:49:57,280 --> 02:50:07,800 CONSENT AND TOGETHER AND POLICY 4013 02:50:10,280 --> 02:50:16,280 AND THE SECOND ONE AND IS A NEW 4014 02:50:16,280 --> 02:50:26,040 RESEARCH AND AND I JUST WANT TO 4015 02:50:26,040 --> 02:50:27,560 STRESS AND IT'S VOLUNTARY USE 4016 02:50:27,560 --> 02:50:29,680 WITH NO REQUIREMENTS FOR 4017 02:50:29,680 --> 02:50:31,080 EXPECTATIONS AND FOR NIH AND THE 4018 02:50:31,080 --> 02:50:33,560 SAMPLE LANGUAGE CONTAINED WILL 4019 02:50:33,560 --> 02:50:35,360 BE USED FOR CONSENT FORM ANY 4020 02:50:35,360 --> 02:50:36,440 STUDY THAT WE'RE SUPPORT 4021 02:50:36,440 --> 02:50:37,880 ORGANIZE CONDUCTING ITSELF. 4022 02:50:37,880 --> 02:50:38,960 IT WAS DEVELOPED TO BE IN 4023 02:50:38,960 --> 02:50:40,360 RESPONSE AT THE STAKEHOLDER 4024 02:50:40,360 --> 02:50:41,920 INTEREST AND EXPRESS NEEDS FOR 4025 02:50:41,920 --> 02:50:43,320 SAMPLE LANGUAGE SO WE WERE 4026 02:50:43,320 --> 02:50:44,600 TRYING TO BE HELPFUL FOR THE 4027 02:50:44,600 --> 02:50:45,200 COMMUNITY HERE. 4028 02:50:45,200 --> 02:50:50,280 AND I WANT TO NOTE WE CALL OUT 4029 02:50:50,280 --> 02:50:51,680 THE ENCOURAGEMENT FOR THOSE 4030 02:50:51,680 --> 02:50:54,640 DEVELOPING AND REVIEWING TO SEE 4031 02:50:54,640 --> 02:50:55,440 CONSULTATION ON TRIBAL 4032 02:50:55,440 --> 02:50:58,320 REQUIREMENTS AND CULTURAL PREF 4033 02:50:58,320 --> 02:50:59,400 REFERENCES PRIOR TO STORAGE AND 4034 02:50:59,400 --> 02:51:01,680 SHARING OF DATA AND 4035 02:51:01,680 --> 02:51:02,040 BIOSPECIMENS. 4036 02:51:02,040 --> 02:51:05,080 WITH THAT I'M GOING TO SEND IT 4037 02:51:05,080 --> 02:51:06,920 BACK TO Dr. HULL TO 4038 02:51:06,920 --> 02:51:07,760 CONTEXTUALIZE THESE CONSENT 4039 02:51:07,760 --> 02:51:09,880 PIECES AND HOW THEY APPLY HERE 4040 02:51:09,880 --> 02:51:12,520 FOR A MORE TRIBAL CONCEPT. 4041 02:51:12,520 --> 02:51:14,960 >>THANK YOU. 4042 02:51:14,960 --> 02:51:17,200 SO PRETTY EARLY ON IN MY CAREER, 4043 02:51:17,200 --> 02:51:19,080 MY MENTORS AND THE CLINICAL 4044 02:51:19,080 --> 02:51:23,800 CENTERS DEPARTMENT OF BIOETHICS, 4045 02:51:23,800 --> 02:51:25,200 TAUGHT ME THAT ALTHOUGH CONSENT 4046 02:51:25,200 --> 02:51:28,040 IS IMPORTANT, IT'S NEVER THE 4047 02:51:28,040 --> 02:51:29,040 FILLS ITEM ON THE LIST OF WHAT 4048 02:51:29,040 --> 02:51:32,480 WE NEED TO DO TO ENSURE THAT 4049 02:51:32,480 --> 02:51:33,680 RESEARCH IS ETHICAL. 4050 02:51:33,680 --> 02:51:42,520 EVEN THOUGH WE SEE FUTURE AND -U 4051 02:51:42,520 --> 02:51:46,960 SEE IN THIS LIST OF BENCHMARKS, 4052 02:51:46,960 --> 02:51:50,200 NEXT SLIDE, CONSENT IS THE 4053 02:51:50,200 --> 02:51:52,800 SEVENTH ITEM ON HAD LIST OF 4054 02:51:52,800 --> 02:51:53,600 BENCHMARKS AFTER WE HAVE A LOT 4055 02:51:53,600 --> 02:51:56,360 OF OTHER STUFF THAT STARTS 4056 02:51:56,360 --> 02:51:58,360 WITHEN GAMING THE COMMUNITY AND 4057 02:51:58,360 --> 02:51:59,920 A COLLABORATIVE PARTNERSHIP. 4058 02:51:59,920 --> 02:52:09,520 AND IT IT -- BETWEEN GROUP 4059 02:52:09,520 --> 02:52:11,160 BUY-IN AND INPUT IN ENDORSEMENT 4060 02:52:11,160 --> 02:52:14,840 OF A PROJECT LEADERSHIP ENFORCE 4061 02:52:14,840 --> 02:52:16,000 DOERSMENT OF A PROJECT AND 4062 02:52:16,000 --> 02:52:21,560 INDIVIDUAL CONSENT. 4063 02:52:21,560 --> 02:52:24,000 AND THE INDIVIDUAL CONSENT IS A 4064 02:52:24,000 --> 02:52:27,360 PROCESS THAT CAN AND SHOULD BE 4065 02:52:27,360 --> 02:52:29,360 DEVELOPED INPUT FROM THE 4066 02:52:29,360 --> 02:52:31,360 COMMUNITY AND THE LAST SLIDE 4067 02:52:31,360 --> 02:52:32,560 Dr. BERGER HAD SHARED. 4068 02:52:32,560 --> 02:52:33,960 I ALSO WOULD POINT OUT ALTHOUGH 4069 02:52:33,960 --> 02:52:35,240 MY MENTORS WERE TALKING ABOUT 4070 02:52:35,240 --> 02:52:36,440 THE INTERNATIONAL RESEARCH 4071 02:52:36,440 --> 02:52:38,640 CONTEXT HERE, I WOULD ARGUE THAT 4072 02:52:38,640 --> 02:52:41,080 THIS IS ACTUALLY MUCH MORE 4073 02:52:41,080 --> 02:52:42,240 ANALOGOUS AND RELEVANT TO THE 4074 02:52:42,240 --> 02:52:45,320 TRIBAL RESEARCH AND IT'S REALLY 4075 02:52:45,320 --> 02:52:46,960 INTERESTING TO SEE HOW THIS MAPS 4076 02:52:46,960 --> 02:52:50,480 ON TO OTHER PRESENTATIONS OF 4077 02:52:50,480 --> 02:52:51,760 COMMUNITY-BASED PARTICIPATORY 4078 02:52:51,760 --> 02:52:55,040 AND TRIBALLY ENGAGE RESEARCH. 4079 02:52:55,040 --> 02:52:55,840 NEXT SLIDE. 4080 02:52:55,840 --> 02:52:58,600 I CAN ALSO SAY THAT THROW AND 4081 02:52:58,600 --> 02:53:01,720 ESPECIALLY IN THE CONTEXT OF MY 4082 02:53:01,720 --> 02:53:03,160 DETAIL, AS A LIAISON BETWEEN 4083 02:53:03,160 --> 02:53:05,120 FLOW AND THE IRB WE'VE BEEN 4084 02:53:05,120 --> 02:53:06,520 WORKING CLOSELY WITH THE 4085 02:53:06,520 --> 02:53:08,520 INTRAMURAL IRB ON A FAIRLY 4086 02:53:08,520 --> 02:53:10,640 REGULAR BASIS AND THIS HAS 4087 02:53:10,640 --> 02:53:13,360 INCLUDED WORKING TOGETHER TO 4088 02:53:13,360 --> 02:53:14,520 TAILOR CONSENT FOR FOREIGN 4089 02:53:14,520 --> 02:53:16,800 LANGUAGE ON A CASE-BY-CASE BASS 4090 02:53:16,800 --> 02:53:19,520 FOR DIFFERENT TRIBAL RESEARCH 4091 02:53:19,520 --> 02:53:19,920 PROTOCOLS. 4092 02:53:19,920 --> 02:53:21,400 AND FOR EXAMPLE, SO HERE, THIS 4093 02:53:21,400 --> 02:53:23,360 IS SOME SAMPLE LANGUAGE THAT 4094 02:53:23,360 --> 02:53:25,560 TEASES OUT, YOU CAN SEE IN RED, 4095 02:53:25,560 --> 02:53:31,200 THIS IS LANGUAGE THAT IS NOVEL 4096 02:53:31,200 --> 02:53:34,440 THAT DEVIATES FROM OUR LANGUAGE 4097 02:53:34,440 --> 02:53:36,400 AND IT DISCUSSES PARTICIPANTS, 4098 02:53:36,400 --> 02:53:38,440 TRIBAL PARTICIPANTS IN RESEARCH 4099 02:53:38,440 --> 02:53:40,800 AND INTEREST IN KNOWING HOW 4100 02:53:40,800 --> 02:53:42,240 THEY'RE PARTICIPATION MAY HARM 4101 02:53:42,240 --> 02:53:47,320 OR BENEFIT GROUPS TO WHICH THEY 4102 02:53:47,320 --> 02:53:49,080 BELONG IN THE NEXT SLIDE THERE'S 4103 02:53:49,080 --> 02:53:49,440 AN ANIMATION. 4104 02:53:49,440 --> 02:53:51,120 THIS IS BORN OUT BY AWE NUMBER 4105 02:53:51,120 --> 02:53:53,600 OF ATTITUDE NAL SURVEYS AND ALSO 4106 02:53:53,600 --> 02:53:55,720 JUST DISCUSSIONS WITH 4107 02:53:55,720 --> 02:53:56,480 INDIVIDUALS GROUPS AS WELL AS 4108 02:53:56,480 --> 02:53:58,320 INPUT FROM GENETIC COUNCILORS 4109 02:53:58,320 --> 02:53:58,880 AND OTHERS. 4110 02:53:58,880 --> 02:54:00,960 SO THIS IS JUST A GLIMPSE OF HOW 4111 02:54:00,960 --> 02:54:03,360 WE'VE BEEN TALKING ABOUT 4112 02:54:03,360 --> 02:54:05,840 TAILORING SOME OF OUR CONSENT 4113 02:54:05,840 --> 02:54:07,960 FORM PROCESSES ALONG THESE 4114 02:54:07,960 --> 02:54:08,160 LINES. 4115 02:54:08,160 --> 02:54:11,720 BACK TO YOU, Dr. BERGER. 4116 02:54:11,720 --> 02:54:14,320 >>SO, YOU KNOW, WE'VE GONE FROM 4117 02:54:14,320 --> 02:54:16,760 CONSENT TO MAKE SURE THAT PEOPLE 4118 02:54:16,760 --> 02:54:17,920 ARE VOLUNTARILY WILLING TO 4119 02:54:17,920 --> 02:54:19,280 PARTICIPATE IN STUDIES TO NOW 4120 02:54:19,280 --> 02:54:20,880 MOVING TOWARDS WHAT HAPPENS WITH 4121 02:54:20,880 --> 02:54:22,960 THE DATA THAT IS GOING TO BE 4122 02:54:22,960 --> 02:54:23,400 GENERATE INTERESTED 4123 02:54:23,400 --> 02:54:24,560 PARTICIPATION IN THAT STUDY 4124 02:54:24,560 --> 02:54:25,720 ITSELF AND YOU KNOW, AS YOU 4125 02:54:25,720 --> 02:54:27,400 HEARD THIS MORNING, SO I'M NOT 4126 02:54:27,400 --> 02:54:29,160 GOING TO SPEND A LOT OF TIMES ON 4127 02:54:29,160 --> 02:54:31,320 THESE MUCH BECAUSE DR. TABAK 4128 02:54:31,320 --> 02:54:34,080 DESCRIBED THESE SO WELL, NIH HAS 4129 02:54:34,080 --> 02:54:35,440 RELEASED A DATA MANAGEMENT 4130 02:54:35,440 --> 02:54:37,400 SHARING POLICY AND I REALLY 4131 02:54:37,400 --> 02:54:43,800 WANTED TO BIG A PUT AND THEY ARE 4132 02:54:43,800 --> 02:54:47,440 IN THE DRIVERS AND WILLING TO 4133 02:54:47,440 --> 02:54:49,440 SHARE SLIDES AND WITH MEZZANINE 4134 02:54:49,440 --> 02:54:50,520 AND WELCOME BACK THIS TALK SO 4135 02:54:50,520 --> 02:54:53,480 WHY DOES NIH WANT DATA TO BE 4136 02:54:53,480 --> 02:54:55,120 SHARED. 4137 02:54:55,120 --> 02:54:56,280 BASICALLY, IT'S TO REPRODUCE 4138 02:54:56,280 --> 02:54:57,960 MORE RESEARCH AND PROMOTING 4139 02:54:57,960 --> 02:55:00,080 TRUST AND RESEARCH ITSELF. 4140 02:55:00,080 --> 02:55:02,680 SO THE POLICY REQUIRES 4141 02:55:02,680 --> 02:55:05,600 SUBMISSION OF A PLAN FOR ALL 4142 02:55:05,600 --> 02:55:06,640 NIH-FUNDED RESEARCH AND WHEN 4143 02:55:06,640 --> 02:55:08,200 IT'S APPROVED, THE EXPECTATION 4144 02:55:08,200 --> 02:55:09,840 IS THE RESEARCH ACTUALLY 4145 02:55:09,840 --> 02:55:11,760 COMPLIES WITH IT AND THAT'S THE 4146 02:55:11,760 --> 02:55:14,480 BEST WAY I CAN BOIL IT DOWN. 4147 02:55:14,480 --> 02:55:16,040 NOW, THIS SCOPE HERE IS IT 4148 02:55:16,040 --> 02:55:18,200 APPLIES TO ALL NIH SUPPORTER 4149 02:55:18,200 --> 02:55:19,840 RESEARCH GENERATING SCIENTIFIC 4150 02:55:19,840 --> 02:55:21,800 DATA AND WE HAVE THINGS THAT ARE 4151 02:55:21,800 --> 02:55:24,280 RELATED TO FACTUAL MATERIAL AND 4152 02:55:24,280 --> 02:55:25,560 VALIDATING AND REPLICATING 4153 02:55:25,560 --> 02:55:26,480 RESEARCH FINDINGS. 4154 02:55:26,480 --> 02:55:28,520 THE EXPECTATION HERE IS THE DATA 4155 02:55:28,520 --> 02:55:31,120 SHARING SHOULD BE MAXIMIZED, 4156 02:55:31,120 --> 02:55:32,920 RESPONSIBLY IMPLEMENTED AND 4157 02:55:32,920 --> 02:55:34,080 PERSPECTIVELY PLANNED FOR AT ALL 4158 02:55:34,080 --> 02:55:37,760 STAGES OF THE RESEARCH PROCESS. 4159 02:55:37,760 --> 02:55:40,120 SO NOW, THE PURPOSE IS TO 4160 02:55:40,120 --> 02:55:42,040 MAXIMIZE APPROPRIATE SHARING BUT 4161 02:55:42,040 --> 02:55:45,760 AS DR. TABAK STRESSED, AND SORRY 4162 02:55:45,760 --> 02:55:46,760 I WAS FLIPPING THIS BASED ON HOW 4163 02:55:46,760 --> 02:55:50,440 HE DESCRIBED THINGS THIS 4164 02:55:50,440 --> 02:55:50,840 MORNING. 4165 02:55:50,840 --> 02:55:52,240 NIH HAS A HUGE RESPECT FOR 4166 02:55:52,240 --> 02:55:55,160 TRIBAL SOVEREIGNTY AND IT'S 4167 02:55:55,160 --> 02:55:56,320 RESPONSIBLE MANAGEMENT EX 4168 02:55:56,320 --> 02:55:58,880 SHARING OF AMERICAN INDIAN AND 4169 02:55:58,880 --> 02:56:00,640 ALASKA NATIVE DATA AND 4170 02:56:00,640 --> 02:56:02,640 EXPLICITLY, NOTED HERE IS THAT 4171 02:56:02,640 --> 02:56:04,200 TRIBAL LAWS REGULATIONS ARE 4172 02:56:04,200 --> 02:56:05,920 POLICIES THAT PROHIBIT 4173 02:56:05,920 --> 02:56:09,880 DISCLOSURE AND CONSTITUTE ADJUST 4174 02:56:09,880 --> 02:56:10,720 FIE FIE ABLE LIMIT. 4175 02:56:10,720 --> 02:56:12,760 WE MADE SURE IT WAS BUILT INTO 4176 02:56:12,760 --> 02:56:16,280 THE ACTUAL POLICY ITSELF. 4177 02:56:16,280 --> 02:56:18,000 DR. TABAK DESCRIBED THE 4178 02:56:18,000 --> 02:56:19,000 SUPPLEMENTS SO I WON'T GO INTO 4179 02:56:19,000 --> 02:56:20,560 IT IT VERY MUCH. 4180 02:56:20,560 --> 02:56:21,960 JUST QUICKLY NOTE IT'S REALLY 4181 02:56:21,960 --> 02:56:23,760 MEANT TO ASSIST INVESTIGATORS 4182 02:56:23,760 --> 02:56:27,720 AND IN DEVELOPING PLANS AND 4183 02:56:27,720 --> 02:56:28,880 EMPHASIZES THE RESPECT FOR 4184 02:56:28,880 --> 02:56:30,560 TRIBAL SOVEREIGNTY AND 4185 02:56:30,560 --> 02:56:31,880 PARTNERSHIPS IN MUTUAL 4186 02:56:31,880 --> 02:56:33,280 AGREEMENTS AND BUILDING TRUST. 4187 02:56:33,280 --> 02:56:34,840 AND YOU KNOW, DR. TABAK ALSO 4188 02:56:34,840 --> 02:56:36,280 WENT THROUGH THIS SO I WON'T GO 4189 02:56:36,280 --> 02:56:37,920 THROUGH THIS AGAIN, BUT AGAIN 4190 02:56:37,920 --> 02:56:39,560 IT'S THIS CONCEPT OF BEST 4191 02:56:39,560 --> 02:56:41,480 PRACTICES FOR HOW WE ENGAGE AND 4192 02:56:41,480 --> 02:56:42,920 IN RESPONSIBLE MANAGEMENT AND 4193 02:56:42,920 --> 02:56:44,920 SHARING AND NOT IT'S 4194 02:56:44,920 --> 02:56:46,560 UNDERSTANDING ITS ENGAGEMENT AND 4195 02:56:46,560 --> 02:56:47,360 ESTABLISHMENT AND YOU ARE SEEING 4196 02:56:47,360 --> 02:56:50,080 A LITTLETATIONS THAT WE HAVE 4197 02:56:50,080 --> 02:56:52,560 A LITTLETATIONS FOR THE ABILITY 4198 02:56:52,560 --> 02:56:53,680 OF THE LIGHTS TO STAY ON SO I'M 4199 02:56:53,680 --> 02:56:55,080 GOING TO STAND IN DARKNESS FOR 4200 02:56:55,080 --> 02:56:56,840 THE REST OF THIS TALK APPARENTLY 4201 02:56:56,840 --> 02:56:58,240 BUT YOU KNOW, AGREEMENTS AND WHO 4202 02:56:58,240 --> 02:57:00,000 WILL MANAGE THE DATA AND 4203 02:57:00,000 --> 02:57:03,160 CONSIDERATION OF ADDITIONAL 4204 02:57:03,160 --> 02:57:03,760 PROTECTIONS AS WELL. 4205 02:57:03,760 --> 02:57:06,000 BACK TO Dr. HULL AND I'M GOING 4206 02:57:06,000 --> 02:57:11,080 TO SEE IF I CAN GET THE LIGHTS 4207 02:57:11,080 --> 02:57:11,560 TURNED ON. 4208 02:57:11,560 --> 02:57:13,360 >>AN NIH INSTITUTE DIRECTOR IS 4209 02:57:13,360 --> 02:57:14,960 TALKING ABOUT INDIGENOUS DATA 4210 02:57:14,960 --> 02:57:16,240 SOVEREIGNTY AND THE CARE 4211 02:57:16,240 --> 02:57:16,560 PRINCIPLES. 4212 02:57:16,560 --> 02:57:18,520 THIS IS A SNIPPET FROM A 4213 02:57:18,520 --> 02:57:19,720 NEWSLETTER THAT Dr. GREEN, WHO 4214 02:57:19,720 --> 02:57:23,160 IS THE DIRECTOR OF THE GENOME 4215 02:57:23,160 --> 02:57:23,960 INSTITUTE THAT EMPLOYS ME SENT 4216 02:57:23,960 --> 02:57:26,080 OUT PERIODICALLY I FORGET IN ITS 4217 02:57:26,080 --> 02:57:27,720 MONTHLY OR QUARTERLY BUT IT'S 4218 02:57:27,720 --> 02:57:29,960 ADDRESSED TO THE BROADER GEEZ 4219 02:57:29,960 --> 02:57:30,600 NOAM I CAN RESEARCH COMMUNITIES 4220 02:57:30,600 --> 02:57:32,760 AND SO FROM WHERE I SIT, THIS IS 4221 02:57:32,760 --> 02:57:34,840 AN IMPORTANT AND ALSO FAIRLY 4222 02:57:34,840 --> 02:57:36,760 RESENT CULTURAL WITHIN THE 4223 02:57:36,760 --> 02:57:41,080 INSTITUTE AND WITH THE NIH OVER 4224 02:57:41,080 --> 02:57:45,520 ALL, Dr. BERGEN IS BACK. 4225 02:57:45,520 --> 02:57:47,720 AND JUST GOING BACK ONLY A FEW 4226 02:57:47,720 --> 02:57:51,640 YEARS AGO, THIS WAS IN 2017, 4227 02:57:51,640 --> 02:57:54,560 THERE WERE A HANDFUL OF US AT 4228 02:57:54,560 --> 02:57:56,120 NIH WHO WE WERE VERY FORTUNATE 4229 02:57:56,120 --> 02:57:58,800 TO BE INVITED TO PARTICIPATE IN 4230 02:57:58,800 --> 02:58:01,200 LARGELY INACTIVE LISTENING MODE 4231 02:58:01,200 --> 02:58:03,240 TO A DATA SHARING WORKSHOP THAT 4232 02:58:03,240 --> 02:58:07,040 WAS RUN BY THE NAVAJO NATION AND 4233 02:58:07,040 --> 02:58:09,160 IT WAS HELD IN NEW MEXICO TO 4234 02:58:09,160 --> 02:58:10,320 TAKE A LOOK AT BETTER INTERNET 4235 02:58:10,320 --> 02:58:12,920 AND FACILITIES AND THE AGENDA 4236 02:58:12,920 --> 02:58:14,360 INCLUDED, IT WAS REALLY FUN, WAS 4237 02:58:14,360 --> 02:58:15,880 PRE CONFERENCE WORKSHOP FOR THE 4238 02:58:15,880 --> 02:58:17,400 COMMUNITY ON THE SCIENCE OF 4239 02:58:17,400 --> 02:58:18,800 GENETICS AND THINGS LIKE 4240 02:58:18,800 --> 02:58:21,520 EXTRACTING DNA FROM A STRAWBERRY 4241 02:58:21,520 --> 02:58:23,320 THAT GENERATED A LOT OF 4242 02:58:23,320 --> 02:58:23,760 ENGAGEMENT. 4243 02:58:23,760 --> 02:58:25,800 BUT THE MAIN WORKSHOP FOCUSED ON 4244 02:58:25,800 --> 02:58:27,480 THE HISTORY AND CONTEXT OF THE 4245 02:58:27,480 --> 02:58:29,120 AND A HALF A HAD HE NATIONS 4246 02:58:29,120 --> 02:58:30,800 MORATORIUM AND ON GENETIC 4247 02:58:30,800 --> 02:58:32,800 RESEARCH AND IT WAS A REALLY 4248 02:58:32,800 --> 02:58:34,320 IMPORTANT LEARNING CURVE FOR ME 4249 02:58:34,320 --> 02:58:37,280 AND MY COLLEAGUES TO ENGAGE IN 4250 02:58:37,280 --> 02:58:39,200 AND CULTURAL PERSPECTIVES ON THE 4251 02:58:39,200 --> 02:58:40,720 IMPORTANCE OF RESEARCH AND 4252 02:58:40,720 --> 02:58:43,320 RESEARCH THAT TAKES PLACE WITHIN 4253 02:58:43,320 --> 02:58:45,880 THE COMMUNITY, INDIGENOUS 4254 02:58:45,880 --> 02:58:48,600 KNOWLEDGE METHODS, DIFFERENT 4255 02:58:48,600 --> 02:58:49,800 METHODOLOGIES AND STARTING TO 4256 02:58:49,800 --> 02:58:51,560 ENGAGE WITH ALTERNATIVES AND 4257 02:58:51,560 --> 02:58:53,000 SOLUTIONS THAT MIGHT LEAD TO 4258 02:58:53,000 --> 02:58:55,000 REPLACING THE MORATORIUM WITHIN 4259 02:58:55,000 --> 02:58:57,240 AN EFFECTIVE POLICY THAT WOULD 4260 02:58:57,240 --> 02:58:58,920 ALLOW GENETIC RESEARCH TO 4261 02:58:58,920 --> 02:59:01,320 PROCEED WHILE ENSURE ADEQUATE 4262 02:59:01,320 --> 02:59:02,120 PROTECTIONS OF THE RIGHTS AND 4263 02:59:02,120 --> 02:59:04,000 INTERESTS OF CITIZENS OF THE 4264 02:59:04,000 --> 02:59:04,720 NAVAJO NATION. 4265 02:59:04,720 --> 02:59:07,400 IT WAS REALLY REMARKABLE FOR ME 4266 02:59:07,400 --> 02:59:08,840 TO MEET AND HEAR THE PRESIDENT 4267 02:59:08,840 --> 02:59:10,520 OF AND NAVAJO NATIONS. 4268 02:59:10,520 --> 02:59:13,640 THE FORMER PRESIDENT, THE 4269 02:59:13,640 --> 02:59:15,160 HONORABLE PRESIDENT RUSSELL 4270 02:59:15,160 --> 02:59:16,800 BAGAY, TALKING ABOUT BIOMEDICAL 4271 02:59:16,800 --> 02:59:18,320 ETHICS AND EVEN TO MEET HIM 4272 02:59:18,320 --> 02:59:19,400 IN-PERSON, IF YOU FLIP TO THE 4273 02:59:19,400 --> 02:59:21,280 NEXT SLIDE, YOU WILL SEE THAT I 4274 02:59:21,280 --> 02:59:23,680 FINALLY MADE IT INTO THE 4275 02:59:23,680 --> 02:59:26,120 PHOTOGRAPH WITH THE LEADER -- 4276 02:59:26,120 --> 02:59:26,360 WHOOPS. 4277 02:59:26,360 --> 02:59:31,360 WITH THE LEADER OF A GREAT 4278 02:59:31,360 --> 02:59:31,600 NATION. 4279 02:59:31,600 --> 02:59:32,200 IT'S OK. 4280 02:59:32,200 --> 02:59:35,160 IT GENERATED A FAIR AMOUNT, A 4281 02:59:35,160 --> 02:59:36,960 LITTLE BIT OF NEWS COVERAGE AS 4282 02:59:36,960 --> 02:59:37,880 WELL WHICH WAS INTERESTING. 4283 02:59:37,880 --> 02:59:39,520 SO THE NEXT ONE IS THE ONE WITH 4284 02:59:39,520 --> 02:59:41,920 THE GREAT PHOTO THAT I LOVE AND 4285 02:59:41,920 --> 02:59:44,000 YOU WILL SEE I LOVE IT SO MUCH 4286 02:59:44,000 --> 02:59:48,400 THAT IN THE NEXT SLIDE, WHEN I 4287 02:59:48,400 --> 02:59:51,680 CAME BACK, INVITE TODAY PRESENT 4288 02:59:51,680 --> 02:59:53,680 AND YOU CAN SEE THIS ALSO 4289 02:59:53,680 --> 02:59:55,960 INCLUDED IN THE PHOTO SOME 4290 02:59:55,960 --> 02:59:58,560 MEMBERS OF THE NAVAJO NATION IRB 4291 02:59:58,560 --> 03:00:02,760 THE THEN IRB CHAIR WAS AT THE 4292 03:00:02,760 --> 03:00:05,960 TABLE AND I CAME BACK AND WE 4293 03:00:05,960 --> 03:00:08,000 WERE TALKING ABOUT THE TOPIC OF 4294 03:00:08,000 --> 03:00:09,760 SOME OF THE OLDER NIH DATA 4295 03:00:09,760 --> 03:00:11,200 SHARING POLICIES AND I WAS ABLE 4296 03:00:11,200 --> 03:00:15,360 TO SHARE MY IMPRESSIONS AND 4297 03:00:15,360 --> 03:00:18,360 LESSON LEARNED FROM THE WORKSHOP 4298 03:00:18,360 --> 03:00:20,880 IN ALBUQUERQUE. 4299 03:00:20,880 --> 03:00:22,000 NEXT SLIDE. 4300 03:00:22,000 --> 03:00:23,920 THE REALLY MOST IMPORTANT 4301 03:00:23,920 --> 03:00:26,440 MESSAGE I THINK THAT I BROUGHT 4302 03:00:26,440 --> 03:00:28,440 BACK TO THE NIH AND REPEATED TO 4303 03:00:28,440 --> 03:00:32,800 ANYBODY WHO WOULD LISTEN, WAS 4304 03:00:32,800 --> 03:00:34,320 SHARED AND EMBEDDED IN A 4305 03:00:34,320 --> 03:00:37,560 DOCUMENT RELATED TO THE NATIONAL 4306 03:00:37,560 --> 03:00:39,040 TRIBAL BEHAVIORAL HEALTH AGENDA 4307 03:00:39,040 --> 03:00:41,280 BUT IT WAS SHARED BY A GROUP OF 4308 03:00:41,280 --> 03:00:43,600 TRIBAL LEADERS AND IN A SET OF 4309 03:00:43,600 --> 03:00:45,320 RECOMMENDATIONS TO FEDERAL 4310 03:00:45,320 --> 03:00:46,880 AGENCIES AND OTHERS WHO WERE IN 4311 03:00:46,880 --> 03:00:50,520 A POSITION TO FUND OR SUPPORT 4312 03:00:50,520 --> 03:00:53,080 THE BEHAVIORAL HEALTH AGENDA FOR 4313 03:00:53,080 --> 03:00:55,400 TRIBES AND THE ADVICE WAS MODIFY 4314 03:00:55,400 --> 03:00:58,240 YOUR REQUIREMENTS TO FIT THE 4315 03:00:58,240 --> 03:01:01,680 RELEVANT TRADITIONAL TRIBAL 4316 03:01:01,680 --> 03:01:03,160 PARADIGM OR ALLOW ROOM FOR 4317 03:01:03,160 --> 03:01:04,600 FLEXIBILITY WHEN EVALUATING 4318 03:01:04,600 --> 03:01:06,120 PROPOSALS SUBMITTED BY AMERICAN 4319 03:01:06,120 --> 03:01:08,280 INDIAN AND ALASKA NATIVE TRIBAL 4320 03:01:08,280 --> 03:01:08,520 NATIONS. 4321 03:01:08,520 --> 03:01:12,160 AND SO WHEN I TALK ABOUT A 4322 03:01:12,160 --> 03:01:15,000 CULTURAL SHIFT, I AM NOW SEEING 4323 03:01:15,000 --> 03:01:16,440 EVIDENCES OF THIS FLEXIBILITY 4324 03:01:16,440 --> 03:01:18,440 NOT AS A RARE EXCEPTION, BUT 4325 03:01:18,440 --> 03:01:21,200 REALLY AS A CHARACTERISTICS OF 4326 03:01:21,200 --> 03:01:23,440 THE EMERGING DATA SHARING 4327 03:01:23,440 --> 03:01:25,320 POLICIES THAT WE'VE BEEN TALKING 4328 03:01:25,320 --> 03:01:26,440 ABOUT. 4329 03:01:26,440 --> 03:01:27,840 FLEXIBILITY, THAT IS APPROPRIATE 4330 03:01:27,840 --> 03:01:32,480 TO UTILIZE, TO ALLOW 4331 03:01:32,480 --> 03:01:43,040 COLLABORATION AND ALLOW PRO PRO 4332 03:01:44,960 --> 03:01:45,600 AT RESEARCH. 4333 03:01:45,600 --> 03:01:46,840 I WANT TO MENTION ANOTHER 4334 03:01:46,840 --> 03:01:48,760 RESEARCH THE NEXT YEAR, THE NEXT 4335 03:01:48,760 --> 03:01:49,720 SLIDE, WHERE WE PARTICIPATED 4336 03:01:49,720 --> 03:01:52,040 MORE ACTIVELY IN A WORKSHOP THAT 4337 03:01:52,040 --> 03:01:53,800 WAS GRACIOUSLY HOSTED BY THE 4338 03:01:53,800 --> 03:01:56,040 SOUTH CENTRAL FOUNDATION AND 4339 03:01:56,040 --> 03:01:58,200 ANCHORAGE, ALASKA. 4340 03:01:58,200 --> 03:02:00,200 AND I WAS INVITED TO BE PART OF 4341 03:02:00,200 --> 03:02:04,840 A NO PANEL FOCUSING ON KEY 4342 03:02:04,840 --> 03:02:06,080 QUESTIONS RELATED TO DATA 4343 03:02:06,080 --> 03:02:06,320 SHARING. 4344 03:02:06,320 --> 03:02:07,880 THE RESULTS OF THIS WORKSHOP AND 4345 03:02:07,880 --> 03:02:10,240 YOU CAN SEE HOW VERY WELL 4346 03:02:10,240 --> 03:02:11,920 ATTENDED IT WAS, IT WAS REALLY 4347 03:02:11,920 --> 03:02:13,080 INTENSIVE OVER SEVERAL DAYS AND 4348 03:02:13,080 --> 03:02:15,120 IT RESULTED IN THIS 4349 03:02:15,120 --> 03:02:17,160 PUBLIC-PATIENT THAT I'M HAPPY TO 4350 03:02:17,160 --> 03:02:18,320 SHARE. 4351 03:02:18,320 --> 03:02:19,560 WE REALLY DRILLED DOWN INTO SOME 4352 03:02:19,560 --> 03:02:21,560 VERY IMPORTANT QUESTIONS ABOUT 4353 03:02:21,560 --> 03:02:23,120 WHAT GUIDELINES SHOULD GOVERN 4354 03:02:23,120 --> 03:02:25,000 DATA SHARING FOR ALASKA NATIVE 4355 03:02:25,000 --> 03:02:28,640 PEOPLE, WHAT ARE SOME OF 4356 03:02:28,640 --> 03:02:33,240 CONCERNS OR I AM TENSIONS OR INE 4357 03:02:33,240 --> 03:02:35,200 DATA SHARING MODEL AND HOW 4358 03:02:35,200 --> 03:02:37,920 SHOULD WE PR PREPPED MOTTLE ANDE 4359 03:02:37,920 --> 03:02:39,600 NEXT SLIDE, REALLY IMPORTANT 4360 03:02:39,600 --> 03:02:41,760 MESSAGES THAT WE HEARD. 4361 03:02:41,760 --> 03:02:44,000 ALASKA NATIVE LEADERS WERE NOT 4362 03:02:44,000 --> 03:02:45,920 OPPOSED TO DATA SHARING AS AS I 4363 03:02:45,920 --> 03:02:47,440 CONCEPT AND THEY WERE JUST 4364 03:02:47,440 --> 03:02:50,840 CONCERNED ABOUT THE SPECIFICS 4365 03:02:50,840 --> 03:02:55,560 AND THE PRINCIPLES THAT 4366 03:02:55,560 --> 03:02:56,480 FLEXIBILITY AND I WAS TALKING 4367 03:02:56,480 --> 03:03:02,800 ABOUT A MOMENT AGO AND JUST 4368 03:03:02,800 --> 03:03:03,520 INCREASED COMMUNICATION ABOUT 4369 03:03:03,520 --> 03:03:04,440 THE DETAILS. 4370 03:03:04,440 --> 03:03:09,440 THE NEXT SLIDE. 4371 03:03:09,440 --> 03:03:10,080 THAT'S YOU. 4372 03:03:10,080 --> 03:03:12,280 >>THANK YOU Dr. HULL. 4373 03:03:12,280 --> 03:03:13,680 JUST TO KIND OF NAVIGATE WHERE 4374 03:03:13,680 --> 03:03:14,760 WE'VE GONE TODAY. 4375 03:03:14,760 --> 03:03:16,400 WE'VE TALKED ABOUT THE LEAD UP 4376 03:03:16,400 --> 03:03:18,440 TO ACTUALLY ESTABLISHING THE 4377 03:03:18,440 --> 03:03:19,600 PROTECTIONS THAT WE HAVE IN 4378 03:03:19,600 --> 03:03:21,400 PLACE AND TO THINKING ABOUT WHAT 4379 03:03:21,400 --> 03:03:22,840 HAD OF THOSE PRETEXTS ARE IN 4380 03:03:22,840 --> 03:03:24,480 TERMS OF CONSENT AND OTHER 4381 03:03:24,480 --> 03:03:25,760 REQUIREMENTS AND SO THAT GETS 4382 03:03:25,760 --> 03:03:27,560 YOU INTO ACTUALLY HAVING 4383 03:03:27,560 --> 03:03:28,480 RESEARCH PARTICIPANTS TAKING 4384 03:03:28,480 --> 03:03:38,800 PART AND STUDIES. 4385 03:04:17,920 --> 03:04:19,120 >>AND THE FIRST IS THE 4386 03:04:19,120 --> 03:04:23,160 INCLUSION OF WOMEN AND 4387 03:04:23,160 --> 03:04:33,400 MINORITIES AND WOMEN AND 4388 03:04:33,400 --> 03:04:35,040 MINORITY GROUPS MUST BE IN ALL 4389 03:04:35,040 --> 03:04:37,120 NIH CLINICAL FUNDED STUDIES AND 4390 03:04:37,120 --> 03:04:40,640 ANY EX CLUE EXCLUSIONS HAVE BEED 4391 03:04:40,640 --> 03:04:42,560 ON A RATIONALE AND THE SECOND 4392 03:04:42,560 --> 03:04:51,120 POLICY WORTH DISCUSSING HERE IS 4393 03:04:51,120 --> 03:04:52,680 WHEN IT'S EFFECTIVE DAY HAS BEEN 4394 03:04:52,680 --> 03:04:54,560 BUT THE PURPOSES THAT TO MAKE 4395 03:04:54,560 --> 03:04:58,720 SURE INDIVIDUALS OF ALL AGES ARE 4396 03:04:58,720 --> 03:05:00,120 INCLUDED IN NIH HUMAN SUBJECTS 4397 03:05:00,120 --> 03:05:01,520 RESEARCH AND IN THIS CASE 4398 03:05:01,520 --> 03:05:02,720 SIMILAR TO WHAT I MENTIONED FOR 4399 03:05:02,720 --> 03:05:04,160 THE MINORITIES AND INCLUSION 4400 03:05:04,160 --> 03:05:06,520 POLICY AND EXCLUSIONS HERE HAVE 4401 03:05:06,520 --> 03:05:07,960 BEEN BASED ON SCIENTIFIC OR 4402 03:05:07,960 --> 03:05:10,120 ETHICAL REASONS AND SO THAT'S 4403 03:05:10,120 --> 03:05:11,280 THE -- THESE FORM THE CRUX OF 4404 03:05:11,280 --> 03:05:13,160 OUR INCLUSION POLICIES AND 4405 03:05:13,160 --> 03:05:14,360 OBVIOUSLY WE HAVE A LOT MORE 4406 03:05:14,360 --> 03:05:16,240 ACTIVITIES THAT ARE GOING ON AND 4407 03:05:16,240 --> 03:05:17,640 WHETHER THEY'RE UNITE 4408 03:05:17,640 --> 03:05:19,680 INITIATIVES OR OTHER TYPES OF 4409 03:05:19,680 --> 03:05:21,040 EFFORTS AROUND HEALTH EQUITY AND 4410 03:05:21,040 --> 03:05:22,560 INVOLVED ENGAGEMENTS AND ACTIONS 4411 03:05:22,560 --> 03:05:25,160 AND I'M GOING TO TURN IT OVER TO 4412 03:05:25,160 --> 03:05:25,800 Dr. HULL AT THIS POINT TO WALK 4413 03:05:25,800 --> 03:05:27,400 US THROUGH THE REST OF THIS AND 4414 03:05:27,400 --> 03:05:30,320 HOW APPLIES MORE IN THE TRIBAL 4415 03:05:30,320 --> 03:05:30,560 CONTEXT. 4416 03:05:30,560 --> 03:05:31,880 >>WELL, WHEN WE COLLECT DATA 4417 03:05:31,880 --> 03:05:33,640 ABOUT WHO WAS INCLUDED IN 4418 03:05:33,640 --> 03:05:35,320 RESEARCH, WE LEARNED A LOT ABOUT 4419 03:05:35,320 --> 03:05:37,720 WHO IS NOT INCLUDED AND YOU 4420 03:05:37,720 --> 03:05:40,560 MAKING FAMILIAR WITH THIS VERY 4421 03:05:40,560 --> 03:05:42,480 IMPORTANT PIE CHART PUBLISHED IN 4422 03:05:42,480 --> 03:05:43,640 FULLERTON THAT ILLUSTRATES JUST 4423 03:05:43,640 --> 03:05:47,560 HOW LIMITED REPRESENTATION OF 4424 03:05:47,560 --> 03:05:51,240 ANCESTRY GROUPS OTHER THAN 4425 03:05:51,240 --> 03:05:53,960 EUROPEAN ANCESTRY GROUPS ARE IN 4426 03:05:53,960 --> 03:05:55,600 OUR REPOSITORIES WITH ONLY 4427 03:05:55,600 --> 03:05:59,080 SUBTLE IMPROVEMENTS OVER TIME. 4428 03:05:59,080 --> 03:06:00,480 BUT, THAN THIS HAS ANIMATED SOME 4429 03:06:00,480 --> 03:06:03,520 VERY IMPORTANT DISCUSSIONS ABOUT 4430 03:06:03,520 --> 03:06:05,800 DIVERSITY AND DIVERSIFICATION OF 4431 03:06:05,800 --> 03:06:12,920 OUR RESEARCH RESOURCES. 4432 03:06:12,920 --> 03:06:14,320 WE NEED TO MAKE SURE IT ISN'T 4433 03:06:14,320 --> 03:06:15,480 JUST RECRUIT HARDER, THAT'S 4434 03:06:15,480 --> 03:06:16,920 WHERE WE RUN INTO TROUBLE. 4435 03:06:16,920 --> 03:06:19,200 I LIKE HOW Dr. CLAW TALKED 4436 03:06:19,200 --> 03:06:20,560 ABOUT THIS IN HER PRESENTATION 4437 03:06:20,560 --> 03:06:22,200 TO THE NIH RESEARCH ETHICS 4438 03:06:22,200 --> 03:06:23,280 COURSE LAST MONTH. 4439 03:06:23,280 --> 03:06:24,760 NEXT SLIDE. 4440 03:06:24,760 --> 03:06:28,200 SHE CA I'M USING THIS SCREEN SHT 4441 03:06:28,200 --> 03:06:29,240 WITH HER PERMISSION. 4442 03:06:29,240 --> 03:06:31,280 THERE'S A RISK OF PERPETUATING A 4443 03:06:31,280 --> 03:06:33,200 CYCLE OF VICTIM-BLAMING AND 4444 03:06:33,200 --> 03:06:35,240 COERCION WHEN WE TELL TRIBAL 4445 03:06:35,240 --> 03:06:36,400 COMMUNITIES THAT THEY'LL MISS 4446 03:06:36,400 --> 03:06:40,840 OUT OPT ON THE BENEFITS TO 4447 03:06:40,840 --> 03:06:42,720 ENROLL IN STUDIES, INSTEAD OF 4448 03:06:42,720 --> 03:06:44,280 DISRUPTING THE CYCLE BY 4449 03:06:44,280 --> 03:06:45,680 ADDRESSING THE ROOT CAUSES AND 4450 03:06:45,680 --> 03:06:47,720 LOOKING AT A BROADER VIEW OF THE 4451 03:06:47,720 --> 03:06:48,880 SYSTEMS WITHIN WHICH THESE 4452 03:06:48,880 --> 03:06:50,640 STUDIES ARE BEING CONDUCTED. 4453 03:06:50,640 --> 03:06:51,480 NEXT SLIDE. 4454 03:06:51,480 --> 03:06:53,520 SO, THE AMERICANS SOCIETY OF 4455 03:06:53,520 --> 03:06:55,920 HUMAN GENETICS RELEASED THE 4456 03:06:55,920 --> 03:07:03,880 RESURESULTS OF A GENOMIC WORKFOE 4457 03:07:03,880 --> 03:07:05,120 SURVEY AND THERE WERE 4458 03:07:05,120 --> 03:07:07,840 PROFESSIONALS SOCIETIES WHO WERE 4459 03:07:07,840 --> 03:07:11,400 SURVEYED, LIKE GWAS DID, NOT 4460 03:07:11,400 --> 03:07:13,920 EXACTLY BECAUSE HEAR THEY'RE 4461 03:07:13,920 --> 03:07:16,720 FRAMED IN RACE AND ETHNICITY BUT 4462 03:07:16,720 --> 03:07:18,760 WE SEE A LACK OF DIVERSE 4463 03:07:18,760 --> 03:07:20,520 REPRESENTATION AND IT MIGHT 4464 03:07:20,520 --> 03:07:23,120 PROVIDE US A CLUE ABOUT WHY THE 4465 03:07:23,120 --> 03:07:24,200 REASONS FOR UNDERSTAND INCLUSION 4466 03:07:24,200 --> 03:07:26,520 OF DIVERSE RESEARCH PARTICIPANTS 4467 03:07:26,520 --> 03:07:28,280 AND THIS CONNECTS WITH THE 4468 03:07:28,280 --> 03:07:31,120 IMPOTENCE FOR SOME RECENT AND 4469 03:07:31,120 --> 03:07:33,080 EMERGING DEVELOPMENTS AND WE 4470 03:07:33,080 --> 03:07:35,320 HAVE APP ACTION PLAN, NEXT 4471 03:07:35,320 --> 03:07:35,920 SLIDE. 4472 03:07:35,920 --> 03:07:39,440 THAT ASSERTS THE PROMISE OF 4473 03:07:39,440 --> 03:07:40,720 GENOMICS, CAN'T BE FULLY 4474 03:07:40,720 --> 03:07:42,040 ACHIEVED WITHOUT ATTRACTING, 4475 03:07:42,040 --> 03:07:44,760 DEVELOPING AND RETAINING A 4476 03:07:44,760 --> 03:07:46,760 DIVERSE WORKFORCE THAT INCLUDES 4477 03:07:46,760 --> 03:07:47,840 PEOPLE FROM GROUPS UNDER 4478 03:07:47,840 --> 03:07:50,840 REPRESENTED IN THE GENOMIC 4479 03:07:50,840 --> 03:07:52,560 ENTERPRISE AND I'VE BEEN GETTING 4480 03:07:52,560 --> 03:07:53,760 MORE INVOLVED WITH EFFORTS, FOR 4481 03:07:53,760 --> 03:07:56,000 EXAMPLE, TO DEVELOP A RACIAL AND 4482 03:07:56,000 --> 03:07:57,680 ETHNIC EQUITY PLAN FOR OUR 4483 03:07:57,680 --> 03:07:58,480 INTRAMURAL WORKFORCE AND THE 4484 03:07:58,480 --> 03:08:01,000 GENOME INSTITUTE AND I'M LOOKING 4485 03:08:01,000 --> 03:08:02,800 FORWARD TO CONTRIBUTING TO THESE 4486 03:08:02,800 --> 03:08:06,040 EFFORTS WHEN MY DETAIL WRAPS UP 4487 03:08:06,040 --> 03:08:08,200 TO ALSO IT'S BEEN GREAT TO WORK 4488 03:08:08,200 --> 03:08:09,680 WITH TRAINEES DURING MY THROW. 4489 03:08:09,680 --> 03:08:11,680 SOME OF YOU GOT TO MEET OUR 4490 03:08:11,680 --> 03:08:13,240 SUMMER INTERN FROM LAST YEAR WHO 4491 03:08:13,240 --> 03:08:14,760 IS NOW OFF JUST DOING ABSOLUTELY 4492 03:08:14,760 --> 03:08:16,320 GREAT RESEARCH AND Dr. CLAUSE 4493 03:08:16,320 --> 03:08:19,760 LAB AND HEADING TOWARDS A VERY 4494 03:08:19,760 --> 03:08:22,200 FRUITFUL CAREER IN BIO ETHICS. 4495 03:08:22,200 --> 03:08:23,640 THIS IS THE LAST SLIDE. 4496 03:08:23,640 --> 03:08:27,960 WE WERE GOING TO ORIGINALLY END 4497 03:08:27,960 --> 03:08:32,560 WITH SOME GENETIC RESEARCH 4498 03:08:32,560 --> 03:08:35,160 FUTURE FORECAST. 4499 03:08:35,160 --> 03:08:36,520 I HAD MET WITH MY COLLEAGUES 4500 03:08:36,520 --> 03:08:39,240 LAST WEEK TO BE BRIEFED ON ALL 4501 03:08:39,240 --> 03:08:42,600 THE BIGGY MER BIG EMERGING ISSU. 4502 03:08:42,600 --> 03:08:43,520 THERE'S A LOT HAPPENING AND I 4503 03:08:43,520 --> 03:08:45,640 MEAN THAT BRIDGE TO AI 4504 03:08:45,640 --> 03:08:46,880 PRESENTATION, I LEARNED A LOT 4505 03:08:46,880 --> 03:08:48,760 FROM THAT MYSELF BUT I'M NOT THE 4506 03:08:48,760 --> 03:08:49,840 BEST SPOKESPERSON FOR THIS 4507 03:08:49,840 --> 03:08:51,880 SCIENCE AND I REALIZED SO 4508 03:08:51,880 --> 03:08:53,720 INSTEAD, I THINK THIS ETHICAL 4509 03:08:53,720 --> 03:08:54,760 FRAMEWORK THAT WAS DEVELOPED BY 4510 03:08:54,760 --> 03:08:56,240 A GROUP OF INDIGENOUS SCHOLARS 4511 03:08:56,240 --> 03:08:58,240 IS A MORE FITTING NOTE FOR ME TO 4512 03:08:58,240 --> 03:09:00,120 END ON AND IT REALLY ANCHORS 4513 03:09:00,120 --> 03:09:01,840 SOME OF THE IMPORTANT LESSONS 4514 03:09:01,840 --> 03:09:07,000 THAT ARE NOT UNIQUE OR 4515 03:09:07,000 --> 03:09:08,440 EXCEPTIONAL BUT HOW WE APPROACH 4516 03:09:08,440 --> 03:09:11,320 RESEARCH FROM A MORE HOLISTIC 4517 03:09:11,320 --> 03:09:13,080 PERSPECTIVE SO IT'S WHAT A 4518 03:09:13,080 --> 03:09:14,840 COMMUNITY-CENTERED APPROACH THAT 4519 03:09:14,840 --> 03:09:23,920 IS GROUNDED IN PARTNERSHIP AND 4520 03:09:23,920 --> 03:09:26,280 RESEARCH TOPIC AND MOVING 4521 03:09:26,280 --> 03:09:28,880 OUTWARD TO CULTURAL CAPACITY AND 4522 03:09:28,880 --> 03:09:29,600 CAPACITY BUILDING BEFORE WE 4523 03:09:29,600 --> 03:09:31,720 BRANCH OUT TO SOME OF THE MORE 4524 03:09:31,720 --> 03:09:33,480 FAMILIAR RESEARCH ETHICS 4525 03:09:33,480 --> 03:09:35,120 PRINCIPLES AND KEEPING EQUITY IN 4526 03:09:35,120 --> 03:09:35,640 SIGHT. 4527 03:09:35,640 --> 03:09:37,320 SO I HOPE THIS NOT PRESENTATION 4528 03:09:37,320 --> 03:09:38,760 WAS RESPONSIVE TO THE REQUEST 4529 03:09:38,760 --> 03:09:40,320 FROM THE TRIBAL ADVISORY 4530 03:09:40,320 --> 03:09:41,720 COMMITTEE AND I ALSO HOPE SOME 4531 03:09:41,720 --> 03:09:46,520 OF MY COLLEAGUES FROM WITHIN NIH 4532 03:09:46,520 --> 03:09:48,640 ARE LISTENING AND I DID INVITE A 4533 03:09:48,640 --> 03:09:49,960 NUMBER OF THEM BECAUSE IT'S 4534 03:09:49,960 --> 03:09:51,720 REALLY ON US TO INTERNALIZE THIS 4535 03:09:51,720 --> 03:09:53,040 FRAMEWORK AND TO ENSURE THAT WE 4536 03:09:53,040 --> 03:09:54,320 ARE LEARNING THE LESSONS OFFS 4537 03:09:54,320 --> 03:09:57,520 HISTORY AND UPHOLDING OUR MORAL 4538 03:09:57,520 --> 03:09:58,920 OBLIGATIONS EX DUTIES TO THE 4539 03:09:58,920 --> 03:10:00,120 COMMUNITIES THAT WE SEARCH. 4540 03:10:00,120 --> 03:10:02,280 SO ON THAT NOTE, WE REALLY LOOK 4541 03:10:02,280 --> 03:10:03,160 FORWARD TO DISCUSSION AND 4542 03:10:03,160 --> 03:10:03,440 QUESTIONS. 4543 03:10:03,440 --> 03:10:09,320 THANK YOU, VERY MUCH. 4544 03:10:09,320 --> 03:10:12,120 >>THANK YOU, Dr. BERGER AND 4545 03:10:12,120 --> 03:10:12,800 Dr. HULL FOR YOUR 4546 03:10:12,800 --> 03:10:15,040 PRESENTATION, I APPRECIATE THAT. 4547 03:10:15,040 --> 03:10:22,200 APPRECIATE ALL OF WHY YOUR WORE 4548 03:10:22,200 --> 03:10:23,240 HAVE QUESTIONS AND DISCUSSION 4549 03:10:23,240 --> 03:10:25,040 ITEMS SO I'LL OPEN IT UP TO THE 4550 03:10:25,040 --> 03:10:35,320 REST OF THE TAC. 4551 03:10:45,040 --> 03:10:47,840 >>THANK YOU FOR THIS 4552 03:10:47,840 --> 03:10:48,200 PRESENTATION. 4553 03:10:48,200 --> 03:10:51,640 I GUESS IN OF MY OF -- I WAS 4554 03:10:51,640 --> 03:10:54,080 REALLY GLAD TO HEAR A LITTLE BIT 4555 03:10:54,080 --> 03:10:57,160 MORE FROM Dr. HULL IN TERMS OF 4556 03:10:57,160 --> 03:10:58,360 YOUR BACKGROUND AND EXPERIENCE 4557 03:10:58,360 --> 03:10:59,520 AND MOTIVATION FOR THE WORK THAT 4558 03:10:59,520 --> 03:11:00,120 YOU ARE DOING. 4559 03:11:00,120 --> 03:11:02,400 IT REALLY HELPED PROVIDE CONTEXT 4560 03:11:02,400 --> 03:11:04,720 AND WE TALKED ABOUT SOME OF THE 4561 03:11:04,720 --> 03:11:06,040 EFFORTS THAT ARE TAKING PLACE 4562 03:11:06,040 --> 03:11:08,760 WHEN IT COMES TO ETHICS. 4563 03:11:08,760 --> 03:11:10,960 ONE THING I DID WANT TO ASK 4564 03:11:10,960 --> 03:11:13,920 ABOUT, BECAUSE I KNOW THE 4565 03:11:13,920 --> 03:11:18,040 TERMINOLOGY OR THE RESPECT FOR 4566 03:11:18,040 --> 03:11:18,680 SOVEREIGNTY, IS USED FREQUENTLY 4567 03:11:18,680 --> 03:11:20,560 AND WITHOUT ANY KIND OF MEAT OR 4568 03:11:20,560 --> 03:11:22,320 ACTION BEHIND IT AND I KIND OF 4569 03:11:22,320 --> 03:11:25,640 FELT LIKE IN THE PRESENTATION, I 4570 03:11:25,640 --> 03:11:28,120 WANTED AND HOPED TO SEE BECAUSE 4571 03:11:28,120 --> 03:11:30,240 THIS IS THE ONE I REQUEST WAS 4572 03:11:30,240 --> 03:11:31,120 MORE ACTIONABLE. 4573 03:11:31,120 --> 03:11:34,600 WHAT ARE THE PIECES THAT ARE 4574 03:11:34,600 --> 03:11:35,760 REALLY BEING, I GUESS PASSED 4575 03:11:35,760 --> 03:11:37,800 ONTO THE RESEARCHER AND YOU 4576 03:11:37,800 --> 03:11:40,400 KNOW, BECAUSE I THINK WHEN WE 4577 03:11:40,400 --> 03:11:42,760 LOOK AT BEST PRACTICES, WHEN 4578 03:11:42,760 --> 03:11:44,440 COMES FOR RESPONSIBLE DATA 4579 03:11:44,440 --> 03:11:45,880 MANAGEMENT AND SHARING, IT 4580 03:11:45,880 --> 03:11:48,760 REALLY IS LEFT UP TO THE 4581 03:11:48,760 --> 03:11:50,520 INTERPRETATION OF A RESEARCHER 4582 03:11:50,520 --> 03:11:52,000 FOR EXAMPLE AND SO FOR ME IT'S 4583 03:11:52,000 --> 03:11:53,360 ALWAYS HELPFUL TO SEE SOMETHING 4584 03:11:53,360 --> 03:11:58,400 A LIT MORE CONCRETE AND TANGIBLE 4585 03:11:58,400 --> 03:12:08,880 AND TO DID YOU HAVE ANOTHER 4586 03:12:17,000 --> 03:12:19,160 SLIDE WHAT RESPECT FOR TRIBAL 4587 03:12:19,160 --> 03:12:20,440 SOVEREIGNTY REMAINS IN RESEARCH. 4588 03:12:20,440 --> 03:12:22,400 >>THANK YOU FOR THAT QUESTION 4589 03:12:22,400 --> 03:12:24,600 AND I HAVEN'T DEVELOPED A -- 4590 03:12:24,600 --> 03:12:26,640 THANK YOU FOR ALL THAT LOVELY, 4591 03:12:26,640 --> 03:12:28,000 POSITIVE FEEDBACK AS WELL. 4592 03:12:28,000 --> 03:12:29,840 AND YOUR QUESTION IS AN 4593 03:12:29,840 --> 03:12:30,640 EXCELLENT ONE. 4594 03:12:30,640 --> 03:12:32,480 MY ANSWER IS THAT AT THE MOMENT, 4595 03:12:32,480 --> 03:12:35,160 WE'VE REALLY BEEN HANDLING THAT 4596 03:12:35,160 --> 03:12:36,920 ON A CASE-BY-CASE BASIS IN VERY 4597 03:12:36,920 --> 03:12:38,360 CLOSE CONVERSATIONS WITH MY 4598 03:12:38,360 --> 03:12:39,760 COLLEAGUES AND THE TRIBAL HEALTH 4599 03:12:39,760 --> 03:12:41,440 RESEARCH OFFICE. 4600 03:12:41,440 --> 03:12:51,960 SO THERE'S A LOT OF DIFFERENT 4601 03:13:05,200 --> 03:13:06,920 WHAT FORMAL TRIBAL CONSULTATION 4602 03:13:06,920 --> 03:13:09,840 PROCESSES LIKE LIKE AND THAT HAS 4603 03:13:09,840 --> 03:13:12,120 BEEN A WHOLE CONVERSATION AND 4604 03:13:12,120 --> 03:13:15,200 THAT WE'VE BEEN HAVING AND THAT 4605 03:13:15,200 --> 03:13:15,840 ARE ACTUAL WILL HE BEEN INFORMED 4606 03:13:15,840 --> 03:13:17,200 BY CONSULTATION BUT THAT'S 4607 03:13:17,200 --> 03:13:18,400 CONSULTATION WITH A CAPITOL C 4608 03:13:18,400 --> 03:13:20,280 AND IT'S A VERY FORMAL PROCESS 4609 03:13:20,280 --> 03:13:24,520 AND INITIATED BY THE NIH TO 4610 03:13:24,520 --> 03:13:25,840 EXPLORE NEW EMERGING PROGRAMS 4611 03:13:25,840 --> 03:13:27,640 AND ISSUES THAT HAVE COME UP. 4612 03:13:27,640 --> 03:13:29,160 THEN THERE ARE VERY SPECIFIC 4613 03:13:29,160 --> 03:13:30,720 QUESTIONS ABOUT WHAT TO DO IN IT 4614 03:13:30,720 --> 03:13:32,280 PARTICULAR STUDIES AND THAT 4615 03:13:32,280 --> 03:13:34,480 REALLY DEPENDS ON WHO IS 4616 03:13:34,480 --> 03:13:35,800 CONDUCTING THE RESEARCH, WHERE 4617 03:13:35,800 --> 03:13:38,360 IT IS TAKING PLACE, AND WHAT THE 4618 03:13:38,360 --> 03:13:44,840 RESEARCH QUESTIONS ARE, SO WE'RE 4619 03:13:44,840 --> 03:13:46,000 SITTING DOWN WITH INVESTIGATORS 4620 03:13:46,000 --> 03:13:47,680 AND FIRST AND FINDING OUT MORE 4621 03:13:47,680 --> 03:13:48,960 OF WHAT THEIR PLANS ARE AND 4622 03:13:48,960 --> 03:13:51,440 HELPING THEM MAKE THE 4623 03:13:51,440 --> 03:13:52,880 CONNECTIONS TO MEET COMMUNITY 4624 03:13:52,880 --> 03:13:55,600 ORGANIZATIONS AND NOT TRIBAL 4625 03:13:55,600 --> 03:13:57,240 LEADERSHIP AND TO DETERMINING 4626 03:13:57,240 --> 03:13:59,280 WHEN MORE FORMAL CONSULTATIONS 4627 03:13:59,280 --> 03:14:00,480 MIGHT BE NEEDED BEFORE 4628 03:14:00,480 --> 03:14:01,920 PROCEEDING AND JUST WORKING ON 4629 03:14:01,920 --> 03:14:04,400 IT IT ON A CASE-BY-CASE BASIS. 4630 03:14:04,400 --> 03:14:06,080 IT'S HARD TO DEVELOP A SLIDE 4631 03:14:06,080 --> 03:14:07,760 THAT CAPTURES ALL OF THAT AND IN 4632 03:14:07,760 --> 03:14:12,080 SOME CASES, WE WANT TO MAKE SURE 4633 03:14:12,080 --> 03:14:16,080 IF AN IHS FACILITY IS ENGAGE THE 4634 03:14:16,080 --> 03:14:18,280 APPROPRIATE IRB FACILITY OR 4635 03:14:18,280 --> 03:14:21,160 PERSONAL OWE RESOURCES AND THE 4636 03:14:21,160 --> 03:14:22,040 IHSIRB WOULD BE INVOLVED AND IT 4637 03:14:22,040 --> 03:14:23,680 IT'S A COMMUNITIES THAT HAS ITS 4638 03:14:23,680 --> 03:14:27,320 OWN TRIBAL IRB OR SOME OTHER 4639 03:14:27,320 --> 03:14:31,160 RESEARCH PROCESS, YOU KNOW, WE 4640 03:14:31,160 --> 03:14:35,040 WOULD GO TO ENSURE THAT THE IRB 4641 03:14:35,040 --> 03:14:36,720 THERE HAD REVIEWED IT AND THAT 4642 03:14:36,720 --> 03:14:39,960 LETTER OF APPROVAL WAS IN PLACE 4643 03:14:39,960 --> 03:14:42,440 BEFORE WE DO A DUEL REVIEW OR 4644 03:14:42,440 --> 03:14:45,520 SEE TO THAT IRB IF APPROXIMATE 4645 03:14:45,520 --> 03:14:46,560 APPROPRIATE. 4646 03:14:46,560 --> 03:14:47,880 SO WE'RE STILL, AS OTHERS HAVE 4647 03:14:47,880 --> 03:14:49,200 SAID, IT'S A LEARNING PROCESS 4648 03:14:49,200 --> 03:14:53,160 FOR US AND WE'RE ACCUMULATING 4649 03:14:53,160 --> 03:14:54,280 THESE EXPERIENCES AND BECOMING 4650 03:14:54,280 --> 03:14:58,920 BETTER CONSULTANTS IN THE 4651 03:14:58,920 --> 03:14:59,120 PROCESS. 4652 03:14:59,120 --> 03:15:04,280 >>I HAVE A FOLLOW UP TO THAT 4653 03:15:04,280 --> 03:15:06,200 AND I KNOW THAT IT'S GRAY AREA 4654 03:15:06,200 --> 03:15:07,360 WHERE DATA IS NOT BEING 4655 03:15:07,360 --> 03:15:08,960 COLLECTED ON A RESERVATION, FOR 4656 03:15:08,960 --> 03:15:12,880 EXAMPLE, AND IT SEEMS LIKE THAT 4657 03:15:12,880 --> 03:15:23,360 SORT OF AN AREA FOR RESEARCH 4658 03:15:25,720 --> 03:15:26,520 GOING THROUGH A REVIEW PROCESS 4659 03:15:26,520 --> 03:15:28,520 BUT THERE'S A GREATER NEED TO 4660 03:15:28,520 --> 03:15:29,360 ESTABLISH SOMETHING A LITTLE BIT 4661 03:15:29,360 --> 03:15:31,640 MORE FORMAL WHEN IT COMES TO 4662 03:15:31,640 --> 03:15:36,320 RESEARCH WITH AI/AM POPULATIONS 4663 03:15:36,320 --> 03:15:36,960 IN GENERAL BECAUSE I KNOW WITH 4664 03:15:36,960 --> 03:15:40,800 CERTAIN STUDIES IF A INDIVIDUAL 4665 03:15:40,800 --> 03:15:42,120 IS GOING TO HOSPITAL FOR EXAMPLE 4666 03:15:42,120 --> 03:15:44,480 AND THEY ARE PART OF A STUDY BUT 4667 03:15:44,480 --> 03:15:45,800 THEY'RE STILL TRIBAL MEMBERS SO 4668 03:15:45,800 --> 03:15:47,720 THEY STILL GO HOME AND RESIDE ON 4669 03:15:47,720 --> 03:15:50,440 A RESERVATION AND IT IS STILL 4670 03:15:50,440 --> 03:15:52,840 MAYBE STUDY IS TARGETING 4671 03:15:52,840 --> 03:15:56,040 AMERICAN INDIANS, ALASKA NATIVE 4672 03:15:56,040 --> 03:15:56,680 SPECIFICALLY BUT THERE'S -- I 4673 03:15:56,680 --> 03:15:57,200 DON'T KNOW. 4674 03:15:57,200 --> 03:15:58,480 I JUST WOULD LIKE TO SEE 4675 03:15:58,480 --> 03:15:59,800 SOMETHING AND MAYBE YOU HAVE 4676 03:15:59,800 --> 03:16:01,320 SOMETHING A LITTLE BIT MORE 4677 03:16:01,320 --> 03:16:02,440 CONCRETE THAT ADDRESSES THIS 4678 03:16:02,440 --> 03:16:04,320 KIND OF A SCENARIO WHEN IT COMES 4679 03:16:04,320 --> 03:16:05,640 TO RESEARCH THAT IS NOT 4680 03:16:05,640 --> 03:16:11,080 HAPPENING ON RESERVATIONS. 4681 03:16:11,080 --> 03:16:13,000 >>THAT IS -- I WAS LISTENING 4682 03:16:13,000 --> 03:16:13,880 VERY CAREFULLY. 4683 03:16:13,880 --> 03:16:16,040 IT'S REALLY IMPORTANT BACKGROUND 4684 03:16:16,040 --> 03:16:19,200 AND WE ARE WORKING ON DEVELOPING 4685 03:16:19,200 --> 03:16:20,400 RESOURCES, CRITICAL 4686 03:16:20,400 --> 03:16:21,320 CONSIDERATIONS DOCUMENT AND THIS 4687 03:16:21,320 --> 03:16:24,000 IS THE DOCUMENT TO WHICH Dr. 4688 03:16:24,000 --> 03:16:26,040 WILSON HAD REFERRED EARLIER THAT 4689 03:16:26,040 --> 03:16:29,360 IS UNDERGOING INTERNAL REVIEW 4690 03:16:29,360 --> 03:16:31,640 AND I'M REALLY EAGER TO SEE HOW 4691 03:16:31,640 --> 03:16:32,680 THAT CONVERSATION GOES AND I 4692 03:16:32,680 --> 03:16:35,080 THINK IT WILL BE AT A FUTURE TAC 4693 03:16:35,080 --> 03:16:36,800 MEETING BUT I THINK WE HAVE BEEN 4694 03:16:36,800 --> 03:16:38,280 TALKING ABOUT THOSE EXACT TOPICS 4695 03:16:38,280 --> 03:16:39,920 AND THERE'S BEEN A SUBGROUP OF 4696 03:16:39,920 --> 03:16:42,240 THE TAC THAT HAS BEEN WORKING ON 4697 03:16:42,240 --> 03:16:44,440 THAN AND I THINK THAT IS REALLY 4698 03:16:44,440 --> 03:16:47,040 IMPORTANT EMERGING AREAS THAT 4699 03:16:47,040 --> 03:16:53,040 WE'LL CONTINUE TO TALK TO YOU 4700 03:16:53,040 --> 03:16:53,240 ABOUT. 4701 03:16:53,240 --> 03:16:54,320 >>THANK YOU. 4702 03:16:54,320 --> 03:16:56,240 >>JUST A QUICK ADD FROM A 4703 03:16:56,240 --> 03:16:57,200 POLICY PERSPECTIVE. 4704 03:16:57,200 --> 03:16:58,720 I WANT TO NOTE, PART OF WHAT WE 4705 03:16:58,720 --> 03:17:00,120 DO WITH OUR POLICIES AND BUILD 4706 03:17:00,120 --> 03:17:02,040 IN THAT FLEXIBILITY FOR 4707 03:17:02,040 --> 03:17:03,320 RESPECTING TRIBAL SOVEREIGNTY. 4708 03:17:03,320 --> 03:17:05,440 AND IF YOU LOOK AT THE DATA 4709 03:17:05,440 --> 03:17:06,880 MANAGEMENT AND SHARING POLICY 4710 03:17:06,880 --> 03:17:08,680 FOR INSTANCE, THE SUPPLEMENTAL 4711 03:17:08,680 --> 03:17:09,960 INFORMATION ON IT IT ACTUALLY 4712 03:17:09,960 --> 03:17:12,120 SPECIFICALLY INCLUDES THE RIGHT 4713 03:17:12,120 --> 03:17:13,120 FOR TRIBES TO ESTABLISH 4714 03:17:13,120 --> 03:17:14,240 EXPECTATIONS FOR HOW THEIR DATA 4715 03:17:14,240 --> 03:17:15,760 ARE MANAGED AND SHARED. 4716 03:17:15,760 --> 03:17:17,640 AND THAT THOSE EXPECTATIONS ARE 4717 03:17:17,640 --> 03:17:19,360 ACTUALLY TO BE RESPECTED BY 4718 03:17:19,360 --> 03:17:20,840 RESEARCHERS AND SO WE TRY TO 4719 03:17:20,840 --> 03:17:22,760 BUILD THESE INTO OUR POLICIES 4720 03:17:22,760 --> 03:17:24,160 AND THE FRAMEWORK AND I 4721 03:17:24,160 --> 03:17:25,120 UNDERSTAND THERE'S OBVIOUSLY 4722 03:17:25,120 --> 03:17:26,480 GOING TO BE LIMITATIONS AND HOW 4723 03:17:26,480 --> 03:17:28,280 THESE COME OUT AND SINGLE IRB 4724 03:17:28,280 --> 03:17:30,040 POLICIES ARE THE SAME WAY AND 4725 03:17:30,040 --> 03:17:31,600 TRYING TO RECOGNIZE TRIBAL 4726 03:17:31,600 --> 03:17:33,360 SOVEREIGNTY AND DETERMINING HOW 4727 03:17:33,360 --> 03:17:38,240 IRB OVERSIGHT OCCURS AND -- THE 4728 03:17:38,240 --> 03:17:38,480 LIGHTS. 4729 03:17:38,480 --> 03:17:40,160 I'M JUST GOING TO GO WITH HER 4730 03:17:40,160 --> 03:17:40,360 HERE. 4731 03:17:40,360 --> 03:17:42,520 I'M GOING HAVE TO TA TALK TO WHO 4732 03:17:42,520 --> 03:17:43,840 PLAYS THE ELECTRIC BILLS AND GET 4733 03:17:43,840 --> 03:17:45,880 THEM TO DO A BETTER JOB. 4734 03:17:45,880 --> 03:17:47,040 WE'VE TRIED TO BUILD THAT INTO 4735 03:17:47,040 --> 03:17:49,280 OUR POLICIES AND IRB POLICY FOR 4736 03:17:49,280 --> 03:17:50,680 INSTANCE, WE ALLOW FOR AN 4737 03:17:50,680 --> 03:17:52,360 EXCEPTION IF IT'S A TRIBAL LAW 4738 03:17:52,360 --> 03:17:54,240 AND A REGULATION OR POLICY AND 4739 03:17:54,240 --> 03:17:55,920 IT'S BEEN PUT IN PLACE SO ALL OF 4740 03:17:55,920 --> 03:17:57,360 THOSE WERE MEANT TO TRY AND PUT 4741 03:17:57,360 --> 03:17:59,440 IN THE FLEXIBILITY AND ALLOW THE 4742 03:17:59,440 --> 03:18:01,200 TRIBES TO DICTATE HOW THIS GOES 4743 03:18:01,200 --> 03:18:01,440 FORWARD. 4744 03:18:01,440 --> 03:18:07,960 THERE ARE OTHER QUESTIONS AS 4745 03:18:07,960 --> 03:18:08,160 WELL. 4746 03:18:08,160 --> 03:18:12,560 >>WE HAVE A QUESTION. 4747 03:18:12,560 --> 03:18:16,800 >>I MISSED THE DIPPI BEGINNINGE 4748 03:18:16,800 --> 03:18:17,720 PRESENTATION SO MAYBE IT WAS 4749 03:18:17,720 --> 03:18:17,960 COVERED. 4750 03:18:17,960 --> 03:18:19,640 ONE OF THE THINGS I REALLY 4751 03:18:19,640 --> 03:18:23,360 APPRECIATED THAT SLIDE YOU 4752 03:18:23,360 --> 03:18:26,560 SHARED AND WITH THE CHECKLIST 4753 03:18:26,560 --> 03:18:37,040 AND HIGHLIGHTING INFORMED COP 4754 03:19:44,840 --> 03:19:47,320 >>IT WASN'T INTENDED TO BE A 4755 03:19:47,320 --> 03:19:48,560 COMPREHENSIVE OVERVIEW OF THE 4756 03:19:48,560 --> 03:19:50,680 CONSENT PROCESS AND IT WAS A 4757 03:19:50,680 --> 03:19:59,960 SNIPPET OF ONE EXAMPLE AND I 4758 03:19:59,960 --> 03:20:02,800 THINK EVIDENCE OF TRIBAL 4759 03:20:02,800 --> 03:20:03,960 CONSULTATION, AND THE DIRECT 4760 03:20:03,960 --> 03:20:05,880 FEEDBACK THROUGH THAT MORE 4761 03:20:05,880 --> 03:20:08,960 FORMAL PROCESS THROUGH LI LISTEG 4762 03:20:08,960 --> 03:20:12,720 SESSIONS THROUGH EXISTING 4763 03:20:12,720 --> 03:20:13,520 RELATIONSHIPS BETWEEN 4764 03:20:13,520 --> 03:20:14,440 RESEARCHERS AND THE COMMUNITY 4765 03:20:14,440 --> 03:20:15,480 AND THE CREATION OF THE 4766 03:20:15,480 --> 03:20:16,560 COMMUNITY ADVISORY BOARDS I'VE 4767 03:20:16,560 --> 03:20:19,280 SEEN A NUMBER OF WAYS THAT THIS 4768 03:20:19,280 --> 03:20:21,040 HAS TAKEN PLACE. 4769 03:20:21,040 --> 03:20:23,800 I COULDN'T SAY THAT WE HAVE A 4770 03:20:23,800 --> 03:20:25,560 FORMAL NIH POLICY EXPECTATION 4771 03:20:25,560 --> 03:20:27,560 THAT'S CLEARLY DEFINED BUT WE DO 4772 03:20:27,560 --> 03:20:29,920 WANT TO SEE THAT EVIDENCE AND WE 4773 03:20:29,920 --> 03:20:33,280 WANT TO HEAR ABOUT THE WAYS THAT 4774 03:20:33,280 --> 03:20:35,440 THE TEAM HAS SPENT TIME IN THE 4775 03:20:35,440 --> 03:20:39,360 COMMUNITY AND HAS TALKED THROUGH 4776 03:20:39,360 --> 03:20:41,560 AUTHORITIES AND GROUPS THAT HAVE 4777 03:20:41,560 --> 03:20:43,920 BEEN DEFUND FOR THE COMMUNITY 4778 03:20:43,920 --> 03:20:46,400 AND AND THAT DOCUMENTATION HAS 4779 03:20:46,400 --> 03:20:48,800 LOOKED DIFFERENT SOMETIMES IT'S 4780 03:20:48,800 --> 03:20:50,600 A TRIBAL RESOLUTION AND 4781 03:20:50,600 --> 03:20:52,560 SOMETIMES IT'S AN IRB LETTER OF 4782 03:20:52,560 --> 03:20:58,880 APPROVAL AND THERE'S DIFFERENT 4783 03:20:58,880 --> 03:21:09,400 FORMS I DON'T KNOW IF THERE'S A 4784 03:21:12,160 --> 03:21:13,400 MORE FORMAL WAY TO DESCRIBE WHAT 4785 03:21:13,400 --> 03:21:15,040 I'M SAYING BUT THE WAY I'VE BEEN 4786 03:21:15,040 --> 03:21:16,600 APPROACHING IT IT, IT WAS A 4787 03:21:16,600 --> 03:21:18,240 FAIRLY INTENSIVE DEEP DIVE INTO 4788 03:21:18,240 --> 03:21:19,480 EACH INDIVIDUAL STUDY AND 4789 03:21:19,480 --> 03:21:21,400 LOOKING AT THE COP TEXT. 4790 03:21:21,400 --> 03:21:25,760 AND THAT ITEN INCLUDES 4791 03:21:25,760 --> 03:21:32,520 DESCRIBING THAT PROCESS 4792 03:21:32,520 --> 03:21:33,880 REPRESENTATIVES FROM THEIR OWN 4793 03:21:33,880 --> 03:21:40,120 COMMUNITY IF THEY HAVE QUESTIONS 4794 03:21:40,120 --> 03:21:47,440 AND THE NATURE OF THE GROUP LIST 4795 03:21:47,440 --> 03:21:48,600 HIGH LOOK LIKE AND CONTRIBUTE TO 4796 03:21:48,600 --> 03:21:49,800 GO THE RESEARCH BASED ON THAT. 4797 03:21:49,800 --> 03:21:56,640 >>SO IT THERE THINKS ANY REQUII 4798 03:21:56,640 --> 03:21:57,440 GUESS ABOUT COMMUNITY SHOWING 4799 03:21:57,440 --> 03:21:59,240 SOME KIND OF DOCUMENTATION FOR 4800 03:21:59,240 --> 03:22:03,680 COMMUNITY CONSENT AND INCLUSION 4801 03:22:03,680 --> 03:22:06,480 OF CONSENT FORMS, FOR EXAMPLE. 4802 03:22:06,480 --> 03:22:09,600 >>SO, I MEAN, THERE WOULD BE -- 4803 03:22:09,600 --> 03:22:11,720 THERE ARE DIFFERENT FORMS OF 4804 03:22:11,720 --> 03:22:12,640 DOCUMENTATION AND CAN YOU GIVE 4805 03:22:12,640 --> 03:22:14,920 ME AN EXAMPLE OF WHAT YOU WOULD 4806 03:22:14,920 --> 03:22:17,120 CONSIDER ADEQUATE DOCUMENTATION, 4807 03:22:17,120 --> 03:22:20,560 I DON'T WANT TO MISS STATE. 4808 03:22:20,560 --> 03:22:24,800 >>I JUST WONDER LIKE WITH NIH 4809 03:22:24,800 --> 03:22:30,520 FUNDED RESEARCH, YOU KNOW, IS 4810 03:22:30,520 --> 03:22:32,000 THERE RESEARCH WITH TRIBAL 4811 03:22:32,000 --> 03:22:33,640 NATIONS IS THERE A REQUIREMENT 4812 03:22:33,640 --> 03:22:35,800 THROUGH THE NIH OF GETTING 4813 03:22:35,800 --> 03:22:45,920 COMMUNITY CONSENT. 4814 03:22:45,920 --> 03:22:47,680 AND GET THE SIGN OFF OF THE 4815 03:22:47,680 --> 03:22:53,960 COMMUNITY AND WE CAN CALL THAT 4816 03:22:53,960 --> 03:23:04,320 COMMUNITY AND AND WHEN 4817 03:23:06,640 --> 03:23:09,040 RESEARCHERS AND IN THAT CONTEXT 4818 03:23:09,040 --> 03:23:11,400 EVIDENCE OF THE SIGN OF AS 4819 03:23:11,400 --> 03:23:13,080 DEFINED FOR THAT COMMUNITY AND 4820 03:23:13,080 --> 03:23:13,880 THAT LEADERSHIP. 4821 03:23:13,880 --> 03:23:17,200 DAVE, DO YOU WANT TO JUMP IN 4822 03:23:17,200 --> 03:23:17,400 HERE. 4823 03:23:17,400 --> 03:23:19,880 >>I WANT TO SAY THAT AS Dr. 4824 03:23:19,880 --> 03:23:22,160 HULL HAD MENTIONED THAT THERE IS 4825 03:23:22,160 --> 03:23:25,920 A GROWING TREND OF MORE EX MORE 4826 03:23:25,920 --> 03:23:26,840 INSTITUTE CENTERS AND OFFICES 4827 03:23:26,840 --> 03:23:28,160 BUILDING IN THAT TYPE OF 4828 03:23:28,160 --> 03:23:30,760 LANGUAGE AS THEY BECOME MORE 4829 03:23:30,760 --> 03:23:32,520 INFORMED AND EDUCATED ABOUT 4830 03:23:32,520 --> 03:23:34,040 TRIBAL SOVEREIGNTY AND TRIBAL 4831 03:23:34,040 --> 03:23:35,400 COMMUNITY ENGAGEMENT SO WE ARE 4832 03:23:35,400 --> 03:23:38,200 SEEING MORE AND MORE AND THEY'RE 4833 03:23:38,200 --> 03:23:40,560 AT VARIOUS LEVELS DEPENDING ON 4834 03:23:40,560 --> 03:23:42,360 EACH OF THE DIFFERENT SPECIFIC 4835 03:23:42,360 --> 03:23:43,280 RESEARCH OPPORTUNITIES. 4836 03:23:43,280 --> 03:23:44,440 SOME WILL REQUIRE LETTERS OF 4837 03:23:44,440 --> 03:23:45,880 SUPPORT FROM THE TRIBAL 4838 03:23:45,880 --> 03:23:47,360 LEADERSHIP AND SO THAT IS ONE OF 4839 03:23:47,360 --> 03:23:50,280 THE THINGS, THAT'S WHAT WE 4840 03:23:50,280 --> 03:23:54,240 IDENTIFIED AS COMMUNITY SUPPORT 4841 03:23:54,240 --> 03:23:55,760 AND LETTERS FROM TRIBAL 4842 03:23:55,760 --> 03:23:57,320 LEADERSHIP BECAUSE OF THE 4843 03:23:57,320 --> 03:23:57,840 GOVERNMENT-TO-GOVERNMENT 4844 03:23:57,840 --> 03:24:00,760 RELATIONSHIP AND SOME OF THOSE 4845 03:24:00,760 --> 03:24:02,840 COME FROM ELECTED TRIBAL LEADERS 4846 03:24:02,840 --> 03:24:05,280 AND EPICENTRES ENDORSED BY 4847 03:24:05,280 --> 03:24:06,800 TRIBAL LEADERS BUT IT DEPENDS ON 4848 03:24:06,800 --> 03:24:09,160 THE DIFFERENT RESEARCH 4849 03:24:09,160 --> 03:24:10,960 INITIATIVES OF WHAT THE LEVEL OR 4850 03:24:10,960 --> 03:24:12,360 HOW MANY DIFFERENT LETTERS ARE 4851 03:24:12,360 --> 03:24:14,360 REQUIRED OR REQUESTED IN TERMS 4852 03:24:14,360 --> 03:24:17,280 OF THAT SUPPORT. 4853 03:24:17,280 --> 03:24:25,520 IT'S GROWING AND I IT'S 4854 03:24:25,520 --> 03:24:26,840 IMPORTANT AS AN AGENCY TO 4855 03:24:26,840 --> 03:24:28,600 SUPPORT EACH OTHER AND WHEN WE 4856 03:24:28,600 --> 03:24:29,440 HAVE QUESTIONS ABOUT PROGRAMS 4857 03:24:29,440 --> 03:24:30,640 THAT ARE BEING DEVELOPED NOT AND 4858 03:24:30,640 --> 03:24:32,080 THIS IS SOMETHING THAT Dr. 4859 03:24:32,080 --> 03:24:34,560 HULL ALSO MENTIONED, THAT WE ARE 4860 03:24:34,560 --> 03:24:37,120 CONTACTED BY PROGRAMS USED TO BE 4861 03:24:37,120 --> 03:24:38,000 WHEN ISSUES AROSE, RIGHT, WHEN 4862 03:24:38,000 --> 03:24:39,200 THERE WAS A PROBLEM, SOMETHING 4863 03:24:39,200 --> 03:24:40,600 HAD HAPPENED AND WE NEEDED TO 4864 03:24:40,600 --> 03:24:42,040 GET THIS RESOLVED AND WE DID 4865 03:24:42,040 --> 03:24:43,440 SOMETHING AND WE NEED TO FIX IT 4866 03:24:43,440 --> 03:24:44,840 BUT NOW IT'S MORE ABOUT WE WANT 4867 03:24:44,840 --> 03:24:46,840 TO CREATE A PROGRAM THAT IS 4868 03:24:46,840 --> 03:24:48,400 INCLUSIVE OF TRIBAL COMMUNITIES 4869 03:24:48,400 --> 03:24:49,600 AND WHAT ARE THE STEPS THAT WE 4870 03:24:49,600 --> 03:24:51,880 NEED TO TAKE TO BE MORE 4871 03:24:51,880 --> 03:24:53,680 INCLUSIVE AND WHAT DO WE NEED TO 4872 03:24:53,680 --> 03:24:57,560 THINK ABOUT AND THIS A 4873 03:24:57,560 --> 03:25:00,720 STEP-BY-STEP, CASE-BY-CASE 4874 03:25:00,720 --> 03:25:01,920 PROCESS AND THE INCLUSION IS 4875 03:25:01,920 --> 03:25:03,320 DIFFERENT AND WE HAVE TO THINK 4876 03:25:03,320 --> 03:25:05,040 ABOUT DIFFERENT SENSITIVITIES. 4877 03:25:05,040 --> 03:25:06,840 WHEN WE THINK ABOUT MATERNAL 4878 03:25:06,840 --> 03:25:07,960 HEALTH ISSUES AND INCLUDING 4879 03:25:07,960 --> 03:25:09,600 CHILDREN IN STUDIES, THOSE ARE 4880 03:25:09,600 --> 03:25:11,000 ALL VERY DIFFERENT LEVELS OF 4881 03:25:11,000 --> 03:25:11,880 SENSITIVITY THAT WE HAVE TO 4882 03:25:11,880 --> 03:25:12,920 THINK ABOUT SO IT'S DEFINITELY 4883 03:25:12,920 --> 03:25:15,800 NOT A ONE-SIZE-FITS ALL WHERE WE 4884 03:25:15,800 --> 03:25:17,280 CAN MIX MASS COMMUNICATION TO 4885 03:25:17,280 --> 03:25:18,560 THE AGENCY TO INFORM EVERYBODY 4886 03:25:18,560 --> 03:25:21,560 ABOUT HOW TO DO TRIBAL WORK AND 4887 03:25:21,560 --> 03:25:22,720 TRIBAL ENGAGEMENT SO WE'RE 4888 03:25:22,720 --> 03:25:27,520 TRYING TO DO THIS AND WORKING 4889 03:25:27,520 --> 03:25:29,720 WITH THE INSTITUTES AND TALKING 4890 03:25:29,720 --> 03:25:31,640 ABOUT WHAT ARE THE SUPER 4891 03:25:31,640 --> 03:25:32,920 SENSITIVITIES BUT WHAT HAPPENED 4892 03:25:32,920 --> 03:25:35,280 TO OUR CHILDREN IN THE PAST AND 4893 03:25:35,280 --> 03:25:36,320 MAKING SURE THAT THEY'RE 4894 03:25:36,320 --> 03:25:37,520 THINKING ABOUT IT IT WHEN 4895 03:25:37,520 --> 03:25:39,040 THEY'RE ENGAGING TO OUR 4896 03:25:39,040 --> 03:25:40,520 COMMUNITIES MOVING FORWARD. 4897 03:25:40,520 --> 03:25:42,160 SO, THOSE ARE SOME OF THE THINGS 4898 03:25:42,160 --> 03:25:43,760 THAT WE'VE BEEN DOING AND 4899 03:25:43,760 --> 03:25:45,280 THERE'S A LOT MORE INVOLVED AND 4900 03:25:45,280 --> 03:25:48,360 LIKE I WANTED TO JUST QUICKLY 4901 03:25:48,360 --> 03:25:49,400 HIGHLIGHT THAT IT IS DEFINITELY 4902 03:25:49,400 --> 03:25:51,800 BY A CASE-BY-CASE BASIS. 4903 03:25:51,800 --> 03:25:53,920 WITH THAT I WILL STOP AND HAND 4904 03:25:53,920 --> 03:25:58,520 IT BACK TO COUNCILWOMAN FRIAS. 4905 03:25:58,520 --> 03:25:59,640 >>OK. 4906 03:25:59,640 --> 03:26:00,080 THANK YOU. 4907 03:26:00,080 --> 03:26:07,160 WE HAVE ANOTHER QUESTION. 4908 03:26:07,160 --> 03:26:07,880 >>THANK YOU. 4909 03:26:07,880 --> 03:26:12,960 JUST A COUPLE OF COMMENTS 4910 03:26:12,960 --> 03:26:13,520 COMMENTS. 4911 03:26:13,520 --> 03:26:14,760 FIRST OF ALL THANK YOU BOTH FOR 4912 03:26:14,760 --> 03:26:16,640 THE PRESENTATION AND IT'S VERY 4913 03:26:16,640 --> 03:26:19,160 HELPFUL AND WE HAVE A LOT OF NEW 4914 03:26:19,160 --> 03:26:23,600 MEMBERS AND SOME ARE MORE OR 4915 03:26:23,600 --> 03:26:24,920 LESS FAMILIAR WITH RESEARCH 4916 03:26:24,920 --> 03:26:26,800 PROTECTION THIS IS GENERAL AND I 4917 03:26:26,800 --> 03:26:28,840 APPRECIATE THE HISTORY OF THE 4918 03:26:28,840 --> 03:26:30,720 IRB DEVELOPMENT EX ALL THOSE 4919 03:26:30,720 --> 03:26:33,080 THINGS AND TRIBAL PIECES AS WELL 4920 03:26:33,080 --> 03:26:34,920 AND. 4921 03:26:34,920 --> 03:26:37,480 I APPRECIATE YOU BRINGING UP THE 4922 03:26:37,480 --> 03:26:38,960 PRINCIPLE OF JUSTICE IF RESEARCH 4923 03:26:38,960 --> 03:26:40,240 WHICH HAS BEEN OVERLOOKED FOR 4924 03:26:40,240 --> 03:26:42,040 FAR TOO LONG I THINK BECAUSE AS 4925 03:26:42,040 --> 03:26:45,560 YOU MENTIONED THE PRE I AM 4926 03:26:45,560 --> 03:26:51,000 INRESPECT FORPERSONS NOT DIMINIT 4927 03:26:51,000 --> 03:26:52,680 ALL BUT A LOT OF THE OTHER 4928 03:26:52,680 --> 03:26:54,560 THINGS YOU TALKED ABOUT ON THAT 4929 03:26:54,560 --> 03:26:57,120 LISTED, THE INTERNATIONAL 4930 03:26:57,120 --> 03:26:58,200 CONSIDERATIONS WHICH YOU WERE 4931 03:26:58,200 --> 03:27:00,080 RIGHT IS VERY APPLICABLE TO 4932 03:27:00,080 --> 03:27:01,440 TRIBAL RESEARCH AND MOST OF 4933 03:27:01,440 --> 03:27:03,200 THOSE HAD TO DO WITH JUSTICE 4934 03:27:03,200 --> 03:27:04,720 ISSUES AND NOT NECESSARILY 4935 03:27:04,720 --> 03:27:06,640 RESPECT AND SO, I THINK THAT'S 4936 03:27:06,640 --> 03:27:08,880 REALLY IMPORTANT TO BRING UP. 4937 03:27:08,880 --> 03:27:12,480 THE OTHER THING I THINK THAT 4938 03:27:12,480 --> 03:27:14,360 WITH -- LIKE Dr. WILSON 4939 03:27:14,360 --> 03:27:15,920 MENTIONED OR BOTH OF YOU 4940 03:27:15,920 --> 03:27:18,040 MENTIONED THAT ONE SIZE CAN'T 4941 03:27:18,040 --> 03:27:22,360 FIT ALL BECAUSE IT'S O MANY SO Y 4942 03:27:22,360 --> 03:27:23,880 DIFFERENT PLACE THIS IS RESEARCH 4943 03:27:23,880 --> 03:27:24,960 CAPACITY SO I KNOW WE'VE TRIED 4944 03:27:24,960 --> 03:27:27,600 FOR A LONG TIME TO BE VERY 4945 03:27:27,600 --> 03:27:29,600 PROACTIVE WITH EDUCATING OUR 4946 03:27:29,600 --> 03:27:31,400 PARTNERS AND ACADEMIC PARTNERS 4947 03:27:31,400 --> 03:27:33,040 AND ACADEMIC MEDICAL PARTNERS 4948 03:27:33,040 --> 03:27:34,360 WHO ARE MOST LIKELY TO ENGAGE 4949 03:27:34,360 --> 03:27:36,160 WITH THE RESEARCH WITH SO THE 4950 03:27:36,160 --> 03:27:38,760 UNIVERSITY OF OKLAHOMA, AND THE 4951 03:27:38,760 --> 03:27:40,880 HEALTH SCIENCES CENTERS AND WE 4952 03:27:40,880 --> 03:27:42,200 EDUCATE THEM ON THE FACT WE HAVE 4953 03:27:42,200 --> 03:27:44,440 AN IRB AND THESE ARE OUR 4954 03:27:44,440 --> 03:27:45,760 POLICIES AND THESE ARE THE 4955 03:27:45,760 --> 03:27:47,080 PROCESSES YOU GO THROUGH SO THAT 4956 03:27:47,080 --> 03:27:48,840 WHEN A PROJECT DOES COME UP, 4957 03:27:48,840 --> 03:27:50,720 THEN THEY KNOWS THAT WE ARE 4958 03:27:50,720 --> 03:27:52,640 HERE'S AND WE DON'T HAVE TO RELY 4959 03:27:52,640 --> 03:27:55,360 ON NIH AND TO SAY OK, YOU GUYS, 4960 03:27:55,360 --> 03:27:57,480 YOU KNOW, IF YOU ARE GOING TO 4961 03:27:57,480 --> 03:27:58,240 WORK IN TRIBES YOU NEED TO 4962 03:27:58,240 --> 03:28:00,040 CONTACT SOMEONE, WHO IT MIGHT 4963 03:28:00,040 --> 03:28:00,280 BE. 4964 03:28:00,280 --> 03:28:01,920 WE WANT TO BE PROACTIVE WITH 4965 03:28:01,920 --> 03:28:04,520 THAT SO WE REACH OUT TO THOSE 4966 03:28:04,520 --> 03:28:07,360 ACADEMIC INSTITUTIONS AND 4967 03:28:07,360 --> 03:28:10,760 RESEARCH INSTITUTIONS AND WE 4968 03:28:10,760 --> 03:28:12,480 HAVE RELATIONSHIPS WITH THE 4969 03:28:12,480 --> 03:28:14,360 ACADEMIC ERBs SO THEY KNOW IF 4970 03:28:14,360 --> 03:28:16,280 A PROJECT COMES THROUGH TO THEM, 4971 03:28:16,280 --> 03:28:20,360 THAT IS ENGAGING PRIMARILY 4972 03:28:20,360 --> 03:28:21,880 TRIBAL PEOPLE, THEY KNOW TO 4973 03:28:21,880 --> 03:28:23,560 CONTACT US AND OFTEN WE ARE THE 4974 03:28:23,560 --> 03:28:25,240 IRB OF RECORD FOR THOSE AND SO I 4975 03:28:25,240 --> 03:28:29,720 THINK THAT ALSO, SO IF YOU KNOW 4976 03:28:29,720 --> 03:28:30,880 WHO THOSE PARTNERS ARE, YOU CAN 4977 03:28:30,880 --> 03:28:33,200 REACH OUT TO THEM AND MAKE SURE 4978 03:28:33,200 --> 03:28:34,480 SELVES, MAKE THOSE PROCESSES 4979 03:28:34,480 --> 03:28:36,000 KNOWN AND MAKE THEM AWARE OF IT 4980 03:28:36,000 --> 03:28:38,640 AND NOT JUST HAVE TO RELY ON NIH 4981 03:28:38,640 --> 03:28:41,080 OR SOMEONE ELSE TO SAY HEY, YOU 4982 03:28:41,080 --> 03:28:43,560 KNOW, YOU NEED TO GO THROUGH 4983 03:28:43,560 --> 03:28:45,320 THOSE PROCESSES SO IT'S 4984 03:28:45,320 --> 03:28:48,480 INCUMBENT UPON US, YOU KNOW, I 4985 03:28:48,480 --> 03:28:49,760 KNOW THIS IS DIFFERENT CAPACITY 4986 03:28:49,760 --> 03:28:56,880 BUT AT LEAST HERE IT'S I INCUMT 4987 03:28:56,880 --> 03:28:58,120 TO LET KNOW THERE ARE PROCESSES 4988 03:28:58,120 --> 03:28:59,520 IN PLACE AND NOT JUST WAIT FOR 4989 03:28:59,520 --> 03:29:01,200 SOMEONE TO A, OH, BY THE WAY, 4990 03:29:01,200 --> 03:29:02,800 WE'RE GOING TO DO RESEARCH WITH 4991 03:29:02,800 --> 03:29:03,960 TRIBES AND YOU NEED TO MAYBE 4992 03:29:03,960 --> 03:29:05,000 TAKE A LOOK AT THIS. 4993 03:29:05,000 --> 03:29:07,400 THANK YOU AGAIN FOR THE 4994 03:29:07,400 --> 03:29:07,720 PRESENTATION. 4995 03:29:07,720 --> 03:29:09,400 >>THANK YOU SO MUCH. 4996 03:29:09,400 --> 03:29:11,600 I THINK ONE OF THE THINGS THAT I 4997 03:29:11,600 --> 03:29:12,640 WANT ODD SHARE WITH THE 4998 03:29:12,640 --> 03:29:14,160 COMMITTEE IS IT'S IMPORTANT IF 4999 03:29:14,160 --> 03:29:15,360 YOU HAVE ANY QUESTIONS OR 5000 03:29:15,360 --> 03:29:16,440 CONCERNS ABOUT THE 5001 03:29:16,440 --> 03:29:18,680 INTERPRETATIONS OF THE RESEARCH 5002 03:29:18,680 --> 03:29:20,280 POLICIES, YOU KNOW, TO FEEL FREE 5003 03:29:20,280 --> 03:29:21,840 TO REACH OUT TO Dr. BERGER AND 5004 03:29:21,840 --> 03:29:23,480 HE WOULD BE HAPPY TO SHARE WHAT 5005 03:29:23,480 --> 03:29:26,120 IS THE INTENT OF THE POLICY 5006 03:29:26,120 --> 03:29:28,320 BECAUSE SOMETIMES WE ALSO COME 5007 03:29:28,320 --> 03:29:30,040 TO TERMS OR IN CONFLICT WITH 5008 03:29:30,040 --> 03:29:31,960 THAT THAT PEOPLE HAVE DIFFERENT 5009 03:29:31,960 --> 03:29:32,920 INTERPRETATIONS OF THE POLICIES 5010 03:29:32,920 --> 03:29:35,200 AND WE WANT TO MAKE SURE IT'S 5011 03:29:35,200 --> 03:29:36,520 CONSISTENT ACROSS THE AGENCY, 5012 03:29:36,520 --> 03:29:40,440 ACROSS THE SCIENTIFIC ENDEAVOR 5013 03:29:40,440 --> 03:29:42,920 AS A WHOLE AND WE'RE 5014 03:29:42,920 --> 03:29:43,640 INTERPRETING THE POLICIES AS 5015 03:29:43,640 --> 03:29:46,200 THEY WERE INTENDED TO BE WRITTEN 5016 03:29:46,200 --> 03:29:47,920 AND ENFORCED. 5017 03:29:47,920 --> 03:29:49,280 >>IF I CAN'T ANSWER IT IT I 5018 03:29:49,280 --> 03:29:49,880 WILL APPROXIMATE PUT YOU IN 5019 03:29:49,880 --> 03:29:51,280 TOUCH WITH THE PEOPLE WHO CAN. 5020 03:29:51,280 --> 03:29:56,320 WE'LL GET YOU ANSWERED. 5021 03:29:56,320 --> 03:29:59,800 >>THANK YOU AND THANK YOU FOR 5022 03:29:59,800 --> 03:30:00,440 YOUR COMMENTS. 5023 03:30:00,440 --> 03:30:01,480 YOU HAVE MY BRAIN THINKING ABOUT 5024 03:30:01,480 --> 03:30:02,520 SOME OF THE THINGS THAT WE CAN 5025 03:30:02,520 --> 03:30:04,160 BE PROACTIVE ON OUR PART. 5026 03:30:04,160 --> 03:30:06,480 I APPRECIATE THAT. 5027 03:30:06,480 --> 03:30:12,520 ANY OTHER QUESTIONS? 5028 03:30:12,520 --> 03:30:13,960 OK, I'LL IT TURNOVER TO YOU, 5029 03:30:13,960 --> 03:30:15,480 Dr. WILSON. 5030 03:30:15,480 --> 03:30:17,600 >>THANK YOU COUNCILWOMAN AND WE 5031 03:30:17,600 --> 03:30:19,240 WANT TO AGAIN THANK Dr. HULL 5032 03:30:19,240 --> 03:30:20,280 AND Dr. BERGER FOR THEIR 5033 03:30:20,280 --> 03:30:21,720 WONDERFUL PRESENTATIONS. 5034 03:30:21,720 --> 03:30:23,640 A LOT OF REALLY IMPORTANT 5035 03:30:23,640 --> 03:30:24,720 QUESTIONS THAT HAVE EX 5036 03:30:24,720 --> 03:30:25,400 APPROXIMATE FROM THIS THAT WE 5037 03:30:25,400 --> 03:30:27,080 CAN ALL BE THINKING ABOUT AND 5038 03:30:27,080 --> 03:30:27,960 HOPEFULLY NOT TOO MUCH 5039 03:30:27,960 --> 03:30:29,480 APPROXIMATE WE NEED TO GET A LOT 5040 03:30:29,480 --> 03:30:31,800 REST BECAUSE WE HAVE A FULL DAY 5041 03:30:31,800 --> 03:30:33,200 AHEAD TOMORROW AND THE 5042 03:30:33,200 --> 03:30:36,520 PRESENTATIONS AS WE BET T GET TE 5043 03:30:36,520 --> 03:30:37,920 LOADED INTO THE BOX PLATFORM SO 5044 03:30:37,920 --> 03:30:40,400 IF YOU HAVE TIME, YOU CAN GO AND 5045 03:30:40,400 --> 03:30:42,400 CHECK THOSE OUT AND IF YOU HAVE 5046 03:30:42,400 --> 03:30:43,360 ANY FOLLOW-UP QUESTIONS, PLEASE 5047 03:30:43,360 --> 03:30:45,600 FEEL FREEZE TO REACH OUT BACK TO 5048 03:30:45,600 --> 03:30:47,400 THE THROW TEAM AND WE WILL GET 5049 03:30:47,400 --> 03:30:48,680 RESPONSES TO ANY QUESTIONS AND 5050 03:30:48,680 --> 03:30:52,320 YOU MIGHT HAVE ON ANY OF THE 5051 03:30:52,320 --> 03:30:53,360 PRESENTATIONS THAT WHERE OUR 5052 03:30:53,360 --> 03:30:54,600 INFORMATION WAS PRESENTED TODAY. 5053 03:30:54,600 --> 03:30:57,440 SO WITH THAT, IN THE INTEREST OF 5054 03:30:57,440 --> 03:31:00,080 TIME WE'VE HAD A WONDERFUL 5055 03:31:00,080 --> 03:31:02,000 DISCUSSION, AND IF COUNCILWOMAN 5056 03:31:02,000 --> 03:31:03,760 FRIAS IF YOU CAN CLOSE US OUT 5057 03:31:03,760 --> 03:31:05,400 WITH A BLESSING THAT WOULD BE 5058 03:31:05,400 --> 03:31:05,600 GREAT. 5059 03:31:05,600 --> 03:31:06,680 >>OK. 5060 03:31:06,680 --> 03:31:07,280 THANK YOU. 5061 03:31:07,280 --> 03:31:08,960 THANK YOU EVERYONE FOR ALLOWING 5062 03:31:08,960 --> 03:31:12,360 ME TO DO THE CLOSING BLESSING. 5063 03:31:12,360 --> 03:31:15,160 AND I JUST WANT TO SHARE JUST A 5064 03:31:15,160 --> 03:31:19,040 LITTLE BIT WITH EVERYONE THAT I 5065 03:31:19,040 --> 03:31:20,000 AM UP WITH OF THE TRIBAL COUNCIL 5066 03:31:20,000 --> 03:31:23,600 MEMBERS HERE FOR PASS KA KNACK' 5067 03:31:23,600 --> 03:31:25,760 TRIBE AND IN OUR TRIBAL 5068 03:31:25,760 --> 03:31:26,840 COMMUNITIES, WE HAVE A LOT OF 5069 03:31:26,840 --> 03:31:27,840 POSITIVE THINGS THAT HAPPEN IN 5070 03:31:27,840 --> 03:31:29,440 OUR COMMUNITIES BUT ALSO, WE 5071 03:31:29,440 --> 03:31:31,280 ALSO HAVE A LOT OF THINGS THAT 5072 03:31:31,280 --> 03:31:35,160 ARE NOT SO POSITIVE AND ONE OF 5073 03:31:35,160 --> 03:31:37,040 THE THINGS THAT WHEN I CAME ON 5074 03:31:37,040 --> 03:31:40,320 COUNCIL THAT I DIDN'T EXPECT WAS 5075 03:31:40,320 --> 03:31:41,600 THE NUMBER OF FUNERALS THAT I 5076 03:31:41,600 --> 03:31:47,000 WOULD BE ATTENDING. 5077 03:31:47,000 --> 03:31:48,480 IT'S PART OF OUR TRIBAL 5078 03:31:48,480 --> 03:31:54,680 LEADERSHIP, I THINK, THAT WE -- 5079 03:31:54,680 --> 03:31:59,080 COMES WITH BEING A TRIBAL LEA 5080 03:31:59,080 --> 03:31:59,360 LEADER. 5081 03:31:59,360 --> 03:32:04,240 JUST RECENTLY WE'VE LOST A 5082 03:32:04,240 --> 03:32:14,920 1-YEAR-OLD AND -- WE'VE LOST 5083 03:32:14,920 --> 03:32:17,600 PEOPLE TO A CAR ACCIDENT AND 5084 03:32:17,600 --> 03:32:22,960 WE'VE LOST PEOPLE TO SO MANY, 5085 03:32:22,960 --> 03:32:24,160 YOU KNOW, JUST IN THE PAST WEEK 5086 03:32:24,160 --> 03:32:26,160 AND SO THESE ARE, I BRING THIS 5087 03:32:26,160 --> 03:32:27,120 UP BECAUSE THIS IS ONE OF THE 5088 03:32:27,120 --> 03:32:29,600 REASONS THAT I SERVED ON THIS 5089 03:32:29,600 --> 03:32:35,280 NIH BECAUSE THERE ARE SO MANY 5090 03:32:35,280 --> 03:32:36,600 QUESTIONS WHY OUR COMMUNITY 5091 03:32:36,600 --> 03:32:39,120 MEMBERS DIE SO EARLY AND SO 5092 03:32:39,120 --> 03:32:41,000 YOUNG AND BECAUSE SOME OF THESE 5093 03:32:41,000 --> 03:32:44,040 CAN BE PREVENTED AND SOME OF 5094 03:32:44,040 --> 03:32:46,720 THESE FATALITIES CAN BE 5095 03:32:46,720 --> 03:32:57,160 PREVENTED SO WE'RE ALWAYS 5096 03:33:07,280 --> 03:33:07,440 PRAYING 5097 03:33:07,440 --> 03:33:10,560 CAN BE PREVENTED AND SOME O 5098 03:33:10,560 --> 03:33:12,440 >>THANK YOU DEAR GOD FOR 5099 03:33:12,440 --> 03:33:13,480 EVERYTHING THAT YOU HAVE BROUGHT 5100 03:33:13,480 --> 03:33:15,160 US AND I'M GRATEFUL FOR EVERY 5101 03:33:15,160 --> 03:33:17,880 SINGLE DAY AND EVERY SINGLE 5102 03:33:17,880 --> 03:33:20,000 THREAD AND FOR BRINGING US HERE 5103 03:33:20,000 --> 03:33:21,680 TODAY, VIRTUALLY AND IN-PERSON 5104 03:33:21,680 --> 03:33:27,520 AND FOR US TO AND AS TO THINK 5105 03:33:27,520 --> 03:33:29,760 ABOUT HOW THINK ABOUT AND 5106 03:33:29,760 --> 03:33:33,440 COMMUNITIES AND TO BLESS OUR 5107 03:33:33,440 --> 03:33:35,840 COMMUNITIES AND WITH SOLUTIONS, 5108 03:33:35,840 --> 03:33:37,200 THANK YOU DEAR GOD BLESS OUR 5109 03:33:37,200 --> 03:33:39,240 FAMILIES AT HOME AND BLESS OUR 5110 03:33:39,240 --> 03:33:41,120 COMMUNITIES AND BLESS EACH OTHER 5111 03:33:41,120 --> 03:33:43,040 AND EVERYONE WHO WE WORK WITH SO 5112 03:33:43,040 --> 03:33:47,880 WE CAN ALL WORK TOGETHER AND IN 5113 03:33:47,880 --> 03:33:49,520 JESUS NAME I PRAY, AMEN. 5114 03:33:49,520 --> 03:33:54,080 THANK YOU, EVERYONE. 5115 03:33:54,080 --> 03:33:55,800 >>THANK YOU SO MUCH. 5116 03:33:55,800 --> 03:33:58,960 AT THIS FOR A VERY ENGAGING DAY 5117 03:33:58,960 --> 03:34:01,640 ONE OF THE 2022 NIH TRIBAL 5118 03:34:01,640 --> 03:34:03,000 ADVISORY COMMITTEE MEETING AND 5119 03:34:03,000 --> 03:34:05,880 WE WILL SEE EVERYBODY TOMORROW. 5120 03:34:05,880 --> 03:34:16,280 >>THANK YOU, EVERYONE.