1 00:07:10,515 --> 00:07:13,885 MY BACKGROUND IS PUBLIC HEALTH. 2 00:07:13,885 --> 00:07:24,062 THANK YOU. 3 00:07:52,524 --> 00:08:02,634 [OFF-MIC] 4 00:08:35,700 --> 00:08:45,810 [OFF-MIC] 5 00:08:54,686 --> 00:08:58,089 >> WE'LL HAVE A COUPLE MORE NIH 6 00:08:58,089 --> 00:08:59,524 FOLKS JOIN AND WE'LL HAVE AN 7 00:08:59,524 --> 00:09:01,893 OPPORTUNITY TO HAVE THEM 8 00:09:01,893 --> 00:09:03,895 INTRODUCE THEMSELVES WHEN THEY 9 00:09:03,895 --> 00:09:04,129 JOIN. 10 00:09:04,129 --> 00:09:11,303 WE HAVE A QUICK WELCOME MESSAGE 11 00:09:11,303 --> 00:09:12,504 FROM DIRECTOR TARA SCHWETZ. 12 00:09:12,504 --> 00:09:17,475 >> HELLO AND WELCOME TO THE NIH 13 00:09:17,475 --> 00:09:21,446 CAMPUS AND THE INDIGENOUS DATA 14 00:09:21,446 --> 00:09:23,014 SOVEREIGNTY MEETING AND I'M THE 15 00:09:23,014 --> 00:09:24,115 DIRECTOR FOR PLANNING AND 16 00:09:24,115 --> 00:09:24,683 INITIATIVES. 17 00:09:24,683 --> 00:09:27,586 IN MY ROLE I SERVE AS THE 18 00:09:27,586 --> 00:09:29,321 DIRECTOR OF DPCPSI AND OVERSEE 19 00:09:29,321 --> 00:09:32,190 THE OFFICES INCLUDING THE TRIBAL 20 00:09:32,190 --> 00:09:32,958 HEALTH RESEARCH OFFICE. 21 00:09:32,958 --> 00:09:35,860 I ALSO LEAD THE COORDINATION OF 22 00:09:35,860 --> 00:09:39,364 NIH WIDE RESEARCH AND STRATEGIC 23 00:09:39,364 --> 00:09:39,664 INITIATIVES. 24 00:09:39,664 --> 00:09:41,032 NOW, I UNFORTUNATELY AM NOT ABLE 25 00:09:41,032 --> 00:09:44,336 TO BE WITH YOU IN PERSON TODAY 26 00:09:44,336 --> 00:09:45,904 CURRENTLY ON WORK TRAVEL IN NEW 27 00:09:45,904 --> 00:09:46,404 YORK CITY. 28 00:09:46,404 --> 00:09:51,343 I'M REALLY SORRY TO MISS THIS 29 00:09:51,343 --> 00:09:53,078 IMPORTANT MEETING BUT PLAN ON BE 30 00:09:53,078 --> 00:09:54,112 BRIEFED ON IT WHEN I RETURN. 31 00:09:54,112 --> 00:09:56,815 BEFORE YOU ALL BEGIN, I WANT TO 32 00:09:56,815 --> 00:09:58,350 THANK YOU FOR TRAVELLING TO 33 00:09:58,350 --> 00:10:01,019 BETHESDA FOR THIS IMPORTANT 34 00:10:01,019 --> 00:10:02,887 MEETING TO INFORM THE NIH 35 00:10:02,887 --> 00:10:05,357 INDIGENOUS DATA SOVEREIGNTY 36 00:10:05,357 --> 00:10:05,590 POLICY. 37 00:10:05,590 --> 00:10:07,025 NIH RECOGNIZES THE GREAT NEED 38 00:10:07,025 --> 00:10:10,528 FOR A POLICY TO HONOR TRIBAL 39 00:10:10,528 --> 00:10:11,796 SOVEREIGNTY IN RESEARCH AND ALSO 40 00:10:11,796 --> 00:10:14,265 TO COORDINATE THE NIH RESPONSE 41 00:10:14,265 --> 00:10:15,567 AND SUPPORT OF RESEARCH IN 42 00:10:15,567 --> 00:10:17,035 TRIBAL AND INDIGENOUS 43 00:10:17,035 --> 00:10:17,335 COMMUNITIES. 44 00:10:17,335 --> 00:10:21,506 WE GREATLY VALUE THE DIVERSE 45 00:10:21,506 --> 00:10:22,207 SCIENTIFIC AND CULTURAL 46 00:10:22,207 --> 00:10:24,409 EXPERTISE ALL OF YOU ARE 47 00:10:24,409 --> 00:10:26,044 BRINGING TO THIS CONVERSATION. 48 00:10:26,044 --> 00:10:29,514 NIH WAS INCREDIBLY LUCKY TO 49 00:10:29,514 --> 00:10:31,616 RECRUIT DR. KARINA WALTERS TO BE 50 00:10:31,616 --> 00:10:32,684 THE DIRECTOR OF THE TRIBAL 51 00:10:32,684 --> 00:10:35,487 HEALTH RESEARCH OFFICE ABOUT A 52 00:10:35,487 --> 00:10:36,855 YEAR AND A HALF AGO. 53 00:10:36,855 --> 00:10:40,258 I HAVE BEEN THRILLED WITH HER 54 00:10:40,258 --> 00:10:43,028 LEADERSHIP ON TRIBAL HEALTH AND 55 00:10:43,028 --> 00:10:45,063 RELATED NIH PROGRAMS AND POLICY. 56 00:10:45,063 --> 00:10:46,364 THE CONVERSATIONS YOU ALL WILL 57 00:10:46,364 --> 00:10:48,400 BE HAVING OVER THE NEXT TO DAYS 58 00:10:48,400 --> 00:10:50,769 WILL DIRECTLY INFORM THE 59 00:10:50,769 --> 00:10:54,472 DEVELOPMENT OF AN INDIGENOUS 60 00:10:54,472 --> 00:10:57,942 DATA SOVEREIGNTY APPLIED TO ALL 61 00:10:57,942 --> 00:11:01,880 NIH RESEARCH AND PROGRAMS. 62 00:11:01,880 --> 00:11:05,050 THE INDIGENOUS DATA WILL ADDRESS 63 00:11:05,050 --> 00:11:06,785 OWNERSHIP, STEWARDSHIP AND 64 00:11:06,785 --> 00:11:09,287 ACCESS AND TRANSFER AND USE AND 65 00:11:09,287 --> 00:11:10,689 RE-USE OF DATA. 66 00:11:10,689 --> 00:11:12,957 THUS FAR THE OFFICE HAS 67 00:11:12,957 --> 00:11:13,892 CONDUCTED NINE DIFFERENT 68 00:11:13,892 --> 00:11:16,494 LISTENING SESSIONS WITH TRIBAL 69 00:11:16,494 --> 00:11:19,698 LEADERS, A.I. AND RESEARCHERS 70 00:11:19,698 --> 00:11:20,865 AND THE NIH TRIBAL ADVISORY 71 00:11:20,865 --> 00:11:22,534 COMMITTEE AND THEIR TECHNICAL 72 00:11:22,534 --> 00:11:22,801 ADVISORS. 73 00:11:22,801 --> 00:11:25,904 THIS IS REALLY HELPED TO INFORM 74 00:11:25,904 --> 00:11:29,507 THE DEVELOPMENT OF THE 75 00:11:29,507 --> 00:11:33,178 INDIGENOUS DATA SOVEREIGNTY 76 00:11:33,178 --> 00:11:34,879 POLICY AND LEARNED A GREAT DEAL 77 00:11:34,879 --> 00:11:37,148 AND EXPECT THEY'LL LEARN MORE 78 00:11:37,148 --> 00:11:39,250 FROM THE CONVERSATION YOU ALL 79 00:11:39,250 --> 00:11:41,486 ARE HAVING TODAY AND TOMORROW. 80 00:11:41,486 --> 00:11:42,921 I LOOK FORWARD TO HEARING WHAT 81 00:11:42,921 --> 00:11:45,190 CAME FROM THE CONVERSATIONS AND 82 00:11:45,190 --> 00:11:45,890 READING THE FINAL REPORT. 83 00:11:45,890 --> 00:11:49,127 THANK YOU ALL AGAIN FOR A GREAT 84 00:11:49,127 --> 00:11:51,896 PARTICIPATE AND I HOPE YOU HAVE 85 00:11:51,896 --> 00:11:53,498 TWO REALLY GREAT AND FRUITFUL 86 00:11:53,498 --> 00:11:57,902 DAYS IN BETHESDA AND SAFE 87 00:11:57,902 --> 00:12:01,506 TRAVELS HOME. 88 00:12:01,506 --> 00:12:01,840 >> ALL RIGHT. 89 00:12:01,840 --> 00:12:04,509 A QUICK OVERVIEW OF OUR AGENDA 90 00:12:04,509 --> 00:12:07,512 TO SET UP THE DAY, ONCE WE GO 91 00:12:07,512 --> 00:12:09,881 THROUGH THE INTRODUCTIONS WE'RE 92 00:12:09,881 --> 00:12:11,349 ABOUT TO HAND IT TO ALL OF YOU 93 00:12:11,349 --> 00:12:12,450 AND YOU'LL INTRODUCE YOURSELVES. 94 00:12:12,450 --> 00:12:13,651 IT'S IMPORTANT TO UNDERSTAND WHO 95 00:12:13,651 --> 00:12:14,853 IS IN THE ROOM WITH US TODAY AND 96 00:12:14,853 --> 00:12:21,659 THE EXPERTISE WE BRING TO THE 97 00:12:21,659 --> 00:12:21,860 TABLE. 98 00:12:21,860 --> 00:12:23,628 WE'LL THEN KICK IT OVER WITH 99 00:12:23,628 --> 00:12:26,931 PANEL 1 AND TAKE A QUICK BREAK 100 00:12:26,931 --> 00:12:28,399 AT 11:35. 101 00:12:28,399 --> 00:12:33,471 YOU MAY HAVE NOTICED WE HAVE A 102 00:12:33,471 --> 00:12:35,507 FULL TABLE TODAY WE'RE GOING TO 103 00:12:35,507 --> 00:12:37,041 HAVE TO ASK OUR PANELISTS TO 104 00:12:37,041 --> 00:12:38,543 SWITCH IN BETWEEN PANELS AND 105 00:12:38,543 --> 00:12:41,079 FIND A NEW SEAT AND IF YOU KNOW 106 00:12:41,079 --> 00:12:44,249 YOU'RE ON PANEL 2, MOVE UP TO 107 00:12:44,249 --> 00:12:46,251 THE FRONT ROW AND WE HAVE LOVELY 108 00:12:46,251 --> 00:12:49,120 FOLKS AFTER THEY WRAP UP. 109 00:12:49,120 --> 00:12:55,059 AFTER PANEL 2, SORRY, PANEL 2 110 00:12:55,059 --> 00:12:59,197 WILL BE HAVE A MODERATOR JOINING 111 00:12:59,197 --> 00:13:02,901 US IN A LITTLE BIT AT THE BRAND 112 00:13:02,901 --> 00:13:03,735 NEW NATIVE HAWAIIAN POINT OF 113 00:13:03,735 --> 00:13:06,704 CARE ISLANDER OFFICE AT THE 114 00:13:06,704 --> 00:13:07,505 NATIONAL INSTITUTE AT MINORITY 115 00:13:07,505 --> 00:13:09,307 HEALTH DISPARITY. 116 00:13:09,307 --> 00:13:12,777 AFTER HER PANEL WE'LL HAVE A 117 00:13:12,777 --> 00:13:16,214 LUNCH BREAK, LOTS OF TIME TO 118 00:13:16,214 --> 00:13:20,018 CHAT INFORMALLY AND NETWORK AND 119 00:13:20,018 --> 00:13:23,588 FOLLOW-UP ONE PANEL 3 MODERATED 120 00:13:23,588 --> 00:13:27,559 BY DR. ETZ OF NATIVE AMERICAN 121 00:13:27,559 --> 00:13:32,163 PROGRAMS AND THE NATIONAL 122 00:13:32,163 --> 00:13:35,500 INSTITUTE OF DRUG ABUSE AFTER 123 00:13:35,500 --> 00:13:36,968 THAT I'LL MODERATE PANEL 4 AND 124 00:13:36,968 --> 00:13:40,138 HAVE A QUICK BREAK AND TALK 125 00:13:40,138 --> 00:13:43,775 ABOUT NEXT STEPS THINK HU TO 126 00:13:43,775 --> 00:13:44,609 PREPARE ABOUT OUR CONVERSATION 127 00:13:44,609 --> 00:13:46,311 TOMORROW AND LOAD THE SHUTTLE 128 00:13:46,311 --> 00:13:47,478 AND TAKE YOU BACK TO THE HOTEL 129 00:13:47,478 --> 00:13:50,615 AT THAT TIME. 130 00:13:50,615 --> 00:13:52,250 SO, WEDGE THAT WE'RE GOING TO 131 00:13:52,250 --> 00:13:54,185 TURN TO INTRODUCING ALL OF YOU. 132 00:13:54,185 --> 00:13:56,321 YOU'LL SEE IN FRONT OF YOU THE 133 00:13:56,321 --> 00:13:56,621 MICROPHONE. 134 00:13:56,621 --> 00:14:03,094 THERE'S A SILVER BUTTON THERE IN 135 00:14:03,094 --> 00:14:04,729 THE MIDDLE, IF THAT TURNS GREEN 136 00:14:04,729 --> 00:14:07,532 THAT TURNS IT ON AND WE'LL BE IN 137 00:14:07,532 --> 00:14:09,367 ALPHABETICAL ORDER SO YOU CAN 138 00:14:09,367 --> 00:14:10,668 GAUGE WHERE YOU'LL FALL BASED ON 139 00:14:10,668 --> 00:14:11,536 YOUR LAST NAMES AND KNOW TO BE 140 00:14:11,536 --> 00:14:17,041 PREPARED THERE. 141 00:14:17,041 --> 00:14:18,276 IF YOU NEED ANYTHING DON'T 142 00:14:18,276 --> 00:14:19,277 HESITATE TO GRAB ONE OF US AND 143 00:14:19,277 --> 00:14:25,083 WE'RE HAPPY TO HELP YOU. 144 00:14:25,083 --> 00:14:29,487 ALL RIGHT, WITH THAT, 145 00:14:29,487 --> 00:14:30,355 DR. ANDERSON YOU'RE UP. 146 00:14:30,355 --> 00:14:37,829 >> I FIGURED THAT WOULD HAPPEN. 147 00:14:37,829 --> 00:14:43,968 [SPEAKING NON-ENGLISH] 148 00:14:43,968 --> 00:14:45,637 HI, EVERYONE. 149 00:14:45,637 --> 00:14:48,606 I'M MATT ANDERSON I'M OVER AT 150 00:14:48,606 --> 00:14:51,609 THE UNIVERSITY OF WISCONSIN AS 151 00:14:51,609 --> 00:14:52,477 AN ASSOCIATE PROFESSOR IN THE 152 00:14:52,477 --> 00:14:54,545 LABORATORY OF GENETICS AND 153 00:14:54,545 --> 00:14:57,215 LABORATORY FOR GENOME SCIENCE 154 00:14:57,215 --> 00:14:57,582 AND INNOVATION. 155 00:14:57,582 --> 00:14:58,783 I RUN A RESEARCH GROUP. 156 00:14:58,783 --> 00:15:01,185 MOST MY LAB STUDIES FUNGAL 157 00:15:01,185 --> 00:15:02,787 PATHOGENS AND HOW IT CONTRIBUTES 158 00:15:02,787 --> 00:15:05,590 TO THE BALANCE BETWEEN HEALTH 159 00:15:05,590 --> 00:15:07,392 AND DISEASE AND ORGANISMS THAT 160 00:15:07,392 --> 00:15:08,526 LIVE ON AND WITH US. 161 00:15:08,526 --> 00:15:10,862 SOME OF OUR WORK HAS MOVED INTO 162 00:15:10,862 --> 00:15:12,730 THE MICROBIOME AND SPECIFICALLY 163 00:15:12,730 --> 00:15:14,866 WORKING IN TRIBAL COMMUNITIES 164 00:15:14,866 --> 00:15:17,502 AROUND HEALTH AND THE 165 00:15:17,502 --> 00:15:24,075 MICROBIOME. 166 00:15:24,075 --> 00:15:24,442 >> GOOD MORNING. 167 00:15:24,442 --> 00:15:27,679 IT'S AN HONOR TO BE HERE THIS 168 00:15:27,679 --> 00:15:28,012 MORNING. 169 00:15:28,012 --> 00:15:30,181 AND JUST A LITTLE BIT ABOUT 170 00:15:30,181 --> 00:15:31,950 MYSELF I KNOW I PUT A LOT ON 171 00:15:31,950 --> 00:15:32,283 THAT SLIDE. 172 00:15:32,283 --> 00:15:35,954 I'M A CITIZEN OF THE CHEROKEE 173 00:15:35,954 --> 00:15:37,889 NATION OF OKLAHOMA AND BORN IN 174 00:15:37,889 --> 00:15:40,825 MISSOURI BUT LIVED IN ALL PARTS 175 00:15:40,825 --> 00:15:42,360 OF THE MIDWEST INCLUDING KANSAS, 176 00:15:42,360 --> 00:15:43,361 ILLINOIS AND MISSOURI. 177 00:15:43,361 --> 00:15:46,798 I GOT MY BACHELOR'S IN BIOLOGY 178 00:15:46,798 --> 00:15:48,032 FROM THE UNIVERSITY OF COLORADO 179 00:15:48,032 --> 00:15:51,936 IN BOULDER AND WENT ON TO GET MY 180 00:15:51,936 --> 00:15:53,871 DOCTORATE AT JOHNS HOPKINS IN 181 00:15:53,871 --> 00:15:55,106 PUBLIC HEALTH. 182 00:15:55,106 --> 00:15:57,875 MY FIRST POSITION WAS IN 183 00:15:57,875 --> 00:15:59,477 NORTHERN ARIZONA HELPING TO 184 00:15:59,477 --> 00:16:06,951 DIRECT NIAAA STUDY ON SUBSTANCE 185 00:16:06,951 --> 00:16:08,019 ABUSE IN AMERICAN INDIANS THERE 186 00:16:08,019 --> 00:16:10,655 AND THEN GOT A JOB AT NORTHERN 187 00:16:10,655 --> 00:16:11,823 ARIZONA UNIVERSITY AND THEN 188 00:16:11,823 --> 00:16:13,124 MOVED TO UNIVERSITY OF SOUTH 189 00:16:13,124 --> 00:16:15,393 FLORIDA AND WAS THERE IN THE 190 00:16:15,393 --> 00:16:16,794 COLLEGE OF MENTAL HEALTH FOR 191 00:16:16,794 --> 00:16:18,629 ABOUT 11 YEARS AND THEN I HAD 192 00:16:18,629 --> 00:16:21,899 THE GREAT OPPORTUNITY TO RETURN 193 00:16:21,899 --> 00:16:27,271 BACK TO FLAGSTAFF AND NIU AND 194 00:16:27,271 --> 00:16:28,473 HELP ESTABLISH THE CENTER FOR 195 00:16:28,473 --> 00:16:33,578 HEALTH EQUITY RESEARCH THERE. 196 00:16:33,578 --> 00:16:34,979 LAST YEAR IN TERMS OF A 197 00:16:34,979 --> 00:16:37,348 PROFESSIONAL HONOR INDUCTED INTO 198 00:16:37,348 --> 00:16:40,618 THE NATIONAL ACADEMY OF MEDICINE 199 00:16:40,618 --> 00:16:42,153 AND NOW I HAVE THE OPPORTUNITY 200 00:16:42,153 --> 00:16:44,856 TO HELP BUILD A NEW COLLEGE OF 201 00:16:44,856 --> 00:16:46,524 MEDICINE AT MY INSTITUTION. 202 00:16:46,524 --> 00:16:47,959 I COULDN'T DO ALL THIS WITHOUT 203 00:16:47,959 --> 00:16:49,761 MY FAMILY AND SO I HAVE A 204 00:16:49,761 --> 00:16:52,296 PICTURE OF MY FAMILY THERE AND 205 00:16:52,296 --> 00:16:54,732 MY HUSBAND AND THREE CHILDREN 206 00:16:54,732 --> 00:16:56,834 AND MOTHER AND ENSO THE DOG NOT 207 00:16:56,834 --> 00:16:57,902 PICTURED. 208 00:16:57,902 --> 00:17:08,046 THANKS. 209 00:17:18,556 --> 00:17:20,525 >> I LIVE IN ANCHORAGE ALASKA 210 00:17:20,525 --> 00:17:23,227 WHERE I WORK AS A RESEARCHER FOR 211 00:17:23,227 --> 00:17:26,497 SOUTH CENTRAL FOUNDATION WHICH 212 00:17:26,497 --> 00:17:28,132 SAY TRIBAL HEALTH ORGANIZATION 213 00:17:28,132 --> 00:17:29,033 HEADQUARTERED IN ANCHORAGE. 214 00:17:29,033 --> 00:17:30,635 GREAT TO BE WITH YOU ALL THIS 215 00:17:30,635 --> 00:17:36,307 MORNING. 216 00:17:36,307 --> 00:17:46,784 >> MY INDIAN NAME IS OTTER 217 00:17:47,552 --> 00:17:48,686 WOMAN. 218 00:17:48,686 --> 00:17:57,795 I'M A MULTI-TRIBAL PERSON AND 219 00:17:57,795 --> 00:17:59,130 FULL TENURED PROFESSOR AT THE 220 00:17:59,130 --> 00:18:00,998 UNIVERSITY OF MONTANA AND ALSO 221 00:18:00,998 --> 00:18:02,867 THE CHAIR OF NATIVE AMERICAN 222 00:18:02,867 --> 00:18:05,002 STUDIES AT THE UNIVERSITY OF 223 00:18:05,002 --> 00:18:09,607 MONTHLY MON AND I'M THRILLED TO 224 00:18:09,607 --> 00:18:10,842 BE HERE TODAY. 225 00:18:10,842 --> 00:18:11,542 I'VE BEEN PART OF DISCUSSION 226 00:18:11,542 --> 00:18:13,211 GROUPS THAT MANY OF US HAVE BEEN 227 00:18:13,211 --> 00:18:17,014 PART OF WITH THE ROBERT WOOD 228 00:18:17,014 --> 00:18:17,849 JOHNSON FOUNDATION WHICH HAS 229 00:18:17,849 --> 00:18:21,886 BEEN HELPFUL TO TALK ABOUT THIS 230 00:18:21,886 --> 00:18:24,989 TOPIC AROUND DATA SOVEREIGNTY 231 00:18:24,989 --> 00:18:27,325 AND MANAGE RESEARCH AND HELP OUR 232 00:18:27,325 --> 00:18:29,727 COMMUNITIES BENEFIT FROM SCIENCE 233 00:18:29,727 --> 00:18:32,430 WHICH IS WHAT I'M PASSIONATE 234 00:18:32,430 --> 00:18:32,630 ABOUT. 235 00:18:32,630 --> 00:18:39,871 THE PHOTO IS FROM A MATRIARCHAL 236 00:18:39,871 --> 00:18:43,708 STORY TELLING AND WE BROULD IN 237 00:18:43,708 --> 00:18:46,811 ELD -- BROUGHT IN ELDERS FROM 238 00:18:46,811 --> 00:18:48,546 OUR CAMPUS AND HOLD PIPE 239 00:18:48,546 --> 00:18:49,714 CEREMONIES AND NAMING 240 00:18:49,714 --> 00:18:50,481 CEREMONIES. 241 00:18:50,481 --> 00:18:53,985 WE HAD LAST YEAR I AM PART OF 242 00:18:53,985 --> 00:18:58,422 OUR BUFFALO WOMEN'S SOCIETY 243 00:18:58,422 --> 00:19:00,825 WHICH IS A WARRIOR WOMEN'S 244 00:19:00,825 --> 00:19:02,160 SOCIETY WE BROUGHT BACK TO THE 245 00:19:02,160 --> 00:19:03,594 NATION FOR THE FIRST TIME IN 246 00:19:03,594 --> 00:19:05,062 OVER 100 YEARS. 247 00:19:05,062 --> 00:19:07,999 WE'RE ALL VERY PROUD ABOUT THE 248 00:19:07,999 --> 00:19:09,033 WORK WE'RE DOING IN MONTANA. 249 00:19:09,033 --> 00:19:13,304 IF YOU NEED TO LABEL IT 250 00:19:13,304 --> 00:19:16,407 DECOLONIZED IT'S CENTERED AROUND 251 00:19:16,407 --> 00:19:19,877 THE CONFEDERACY AND THE WORK 252 00:19:19,877 --> 00:19:21,812 WE'RE DOING AROUND CENTERING OUR 253 00:19:21,812 --> 00:19:23,481 CHILDREN, OUR ELDERS AND OUR 254 00:19:23,481 --> 00:19:31,422 PEOPLE WITHIN THE WORK WE DO AND 255 00:19:31,422 --> 00:19:33,391 HAPPY TO BE PART OF THAT IN SOME 256 00:19:33,391 --> 00:19:33,991 SMALL WAY. 257 00:19:33,991 --> 00:19:35,693 A LOT OF THE WORK HAS BEEN 258 00:19:35,693 --> 00:19:36,627 SHIFTING FROM NIH FUNDED 259 00:19:36,627 --> 00:19:39,030 RESEARCH WHICH I HAVE A LONG 260 00:19:39,030 --> 00:19:41,832 HISTORY OF BEING FUNDED WITH 261 00:19:41,832 --> 00:19:43,734 RO1s AND DIFFERENT THINGS BUT TO 262 00:19:43,734 --> 00:19:45,603 CENTER INDIGENOUS VOICES WITHIN 263 00:19:45,603 --> 00:19:48,439 THE WORK AND INDIGENOUS 264 00:19:48,439 --> 00:19:49,640 CEREMONIES INTO THE HEALING 265 00:19:49,640 --> 00:19:55,313 PROCESS AND HOW TO ELEVATE THAT 266 00:19:55,313 --> 00:19:57,648 PROFESSOR AND THE DISCOURSE ON 267 00:19:57,648 --> 00:19:58,316 OWNERSHIP AROUND OWNERSHIP INTO 268 00:19:58,316 --> 00:19:59,016 HEALING. 269 00:19:59,016 --> 00:20:03,654 THAT'S WHAT I'M INTERESTED IN. 270 00:20:03,654 --> 00:20:06,157 SO I'M WORDY TOO I TOOK THE FACT 271 00:20:06,157 --> 00:20:08,292 THAT WE HAD TWO SLIDES AND ADDED 272 00:20:08,292 --> 00:20:11,929 SOME QUESTIONS WHICH WERE MY OWN 273 00:20:11,929 --> 00:20:13,931 QUESTIONS I'M SORRY I'M GOING 274 00:20:13,931 --> 00:20:15,233 OFF AGENDA FIRST THING. 275 00:20:15,233 --> 00:20:20,705 SO REALLY WHAT ARE MY THOUGHTS 276 00:20:20,705 --> 00:20:23,507 COMING HERE AND MY OWN AGENDA 277 00:20:23,507 --> 00:20:25,343 GOALS AND WAYS TO PROVIDE MORE 278 00:20:25,343 --> 00:20:26,110 EFFICIENT APPLICATIONS OF 279 00:20:26,110 --> 00:20:31,415 SCIENCE AND SCHOLARSHIP ABOUT 280 00:20:31,415 --> 00:20:33,851 HEALTH AND HEALING TO BENEFIT 281 00:20:33,851 --> 00:20:34,385 NATIVE COMMUNITIES. 282 00:20:34,385 --> 00:20:37,421 IN MONTANA WE'RE TIRED OF SEEING 283 00:20:37,421 --> 00:20:39,056 OUR HEALTH STATISTICS BEING SO 284 00:20:39,056 --> 00:20:40,291 DIRE. 285 00:20:40,291 --> 00:20:41,492 WE HAVE ONE OF THE HIGHEST 286 00:20:41,492 --> 00:20:43,661 SUICIDE RATES IN THE COUNTRY. 287 00:20:43,661 --> 00:20:45,896 WE HAVE EXTRACTIVE RESEARCH 288 00:20:45,896 --> 00:20:47,598 HAPPENING ON EACH OF OUR 289 00:20:47,598 --> 00:20:47,932 RESERVATIONS. 290 00:20:47,932 --> 00:20:50,234 WE HAVE DYSFUNCTION THAT IS ALSO 291 00:20:50,234 --> 00:20:53,504 OCCURRING WITHIN OUR TRIBAL 292 00:20:53,504 --> 00:20:54,972 COMMUNITIES SO THAT IT'S VERY 293 00:20:54,972 --> 00:20:56,807 MUCH LIMITING THE WAYS SCIENCE 294 00:20:56,807 --> 00:20:58,376 CAN EFFECTIVELY BENEFIT OUR 295 00:20:58,376 --> 00:20:58,676 COMMUNITIES. 296 00:20:58,676 --> 00:20:59,477 AND A LOT OF US ARE VERY TIRED 297 00:20:59,477 --> 00:21:00,878 OF THAT. 298 00:21:00,878 --> 00:21:03,014 AND WE'RE TIRED OF SEEING OUR 299 00:21:03,014 --> 00:21:03,648 COMMUNITIES USED AS A SOCIAL 300 00:21:03,648 --> 00:21:09,620 EXPERIMENT AND SUFFERING. 301 00:21:09,620 --> 00:21:10,454 AND OTHER COMMUNITIES. 302 00:21:10,454 --> 00:21:12,757 HOW CAN WE STOP AND SLOW THE 303 00:21:12,757 --> 00:21:14,992 PREDATORY NATURE OF SOME OF THAT 304 00:21:14,992 --> 00:21:15,926 RESEARCH IS ARE SOME OF THE 305 00:21:15,926 --> 00:21:18,329 THINGS I'M INTERESTED IN. 306 00:21:18,329 --> 00:21:21,198 HOW CAN WE ADOPT THE EFFICACY 307 00:21:21,198 --> 00:21:21,966 AND INVEST IN HEALING IN 308 00:21:21,966 --> 00:21:22,900 APPROPRIATE WAYS. 309 00:21:22,900 --> 00:21:25,870 THAT'S A DIFFICULT TOPIC. 310 00:21:25,870 --> 00:21:28,839 THE BLACK FEED HAVE MORE 311 00:21:28,839 --> 00:21:29,874 TRANSPARENT ABOUT OUR COMMUNITY 312 00:21:29,874 --> 00:21:30,374 AND CULTURE. 313 00:21:30,374 --> 00:21:32,677 PART HAS TO DO WITH THE FACT WE 314 00:21:32,677 --> 00:21:35,012 HAVE OUR CREATION STORIES AND 315 00:21:35,012 --> 00:21:37,882 KNOWLEDGE EMBEDDED WITHIN OUR 316 00:21:37,882 --> 00:21:39,750 CEREMONIES AND THOSE ARE THINGS 317 00:21:39,750 --> 00:21:41,152 INTACT AND NOT ALL TRIBES HAVE 318 00:21:41,152 --> 00:21:41,352 THEM. 319 00:21:41,352 --> 00:21:42,753 THAT'S A SOURCE OF PRIVILEGE WE 320 00:21:42,753 --> 00:21:43,120 HAVE. 321 00:21:43,120 --> 00:21:45,222 WE WOULD LIKE TO SEE THAT 322 00:21:45,222 --> 00:21:46,824 CREATED WITHIN OTHER TRIBAL 323 00:21:46,824 --> 00:21:47,692 NATIONS IS TO INVEST IN WAYS 324 00:21:47,692 --> 00:21:52,363 THEY CAN HAVE THAT BACK. 325 00:21:52,363 --> 00:21:53,931 AND FINALLY HOW CAN INDIGENOUS 326 00:21:53,931 --> 00:21:56,200 SCHOLARS BE SUPPORTED IN THIS 327 00:21:56,200 --> 00:21:56,467 WORK. 328 00:21:56,467 --> 00:21:57,902 ONE OF THE THINGS AS SOMEBODY 329 00:21:57,902 --> 00:22:00,705 WHO HAS BECOME A CHAIR OF A 330 00:22:00,705 --> 00:22:01,872 DEPARTMENT AND A LONG TIME 331 00:22:01,872 --> 00:22:04,108 PERSON WHO'S HAD TENURE IS WE 332 00:22:04,108 --> 00:22:05,676 SEE A LOT OF BONE COLLECTING AND 333 00:22:05,676 --> 00:22:08,112 THAT'S A VERY CRASS WAY OF 334 00:22:08,112 --> 00:22:11,248 SAYING THE WAYS OUR NATIVE 335 00:22:11,248 --> 00:22:13,884 SCHOLARS ARE USED TO CREATE 336 00:22:13,884 --> 00:22:15,753 FUNDING SOURCES. 337 00:22:15,753 --> 00:22:17,488 THERE'S OFTEN TIMES BAIT AND 338 00:22:17,488 --> 00:22:19,156 SWITCHES THAT HAPPEN WHERE 339 00:22:19,156 --> 00:22:21,792 INDIAN PEOPLE ARE INCLUDED ON 340 00:22:21,792 --> 00:22:23,494 PROPOSALS AND TAKEN OFF WHEN 341 00:22:23,494 --> 00:22:24,662 IT'S FUNDED. 342 00:22:24,662 --> 00:22:27,465 THESE ARE PRACTICES THAT HAPPEN 343 00:22:27,465 --> 00:22:28,566 COMMONLY WITHIN THE MACHINE OF 344 00:22:28,566 --> 00:22:30,768 NIH FUNDING AND IT IS SOMETHING 345 00:22:30,768 --> 00:22:33,237 THAT REALLY WE HAVE TO FIND A 346 00:22:33,237 --> 00:22:37,875 WAY COLLECTIVELY TO STOP AND NO 347 00:22:37,875 --> 00:22:39,410 LONGER PUT SUCH STRAIN ON OUR 348 00:22:39,410 --> 00:22:42,246 NATIVE SCHOLARS SO THEY'RE 349 00:22:42,246 --> 00:22:43,381 FEELING BURNED OUT. 350 00:22:43,381 --> 00:22:47,017 I MENTOR NATIVE SCHOLARS AS WELL 351 00:22:47,017 --> 00:22:48,052 AND SOMETHING I'M ALWAYS 352 00:22:48,052 --> 00:22:49,587 CONCERNED ABOUT IS ESPECIALLY 353 00:22:49,587 --> 00:22:51,222 WHEN PEOPLE COME OUT OF GRADUATE 354 00:22:51,222 --> 00:22:52,790 SCHOOL ARE TAKEN IN BY PEOPLE 355 00:22:52,790 --> 00:22:54,925 WHO SOMETIMES DO NOT HAVE THEIR 356 00:22:54,925 --> 00:22:56,460 BEST INTEREST AT HEART AND ARE 357 00:22:56,460 --> 00:22:59,497 USING THEM SIMPLY TO CREATE 358 00:22:59,497 --> 00:23:01,999 MONEY BUILDING ENTITIES OFF THE 359 00:23:01,999 --> 00:23:03,768 SUFFERING OF MY COMMUNITY AND MY 360 00:23:03,768 --> 00:23:04,201 COMMUNITIES. 361 00:23:04,201 --> 00:23:05,903 SO THOSE ARE SOME THINGS THAT 362 00:23:05,903 --> 00:23:09,707 I'D LIKE FOR US TO SPEND SOME 363 00:23:09,707 --> 00:23:10,641 TIME AND INTENTIONALITY ON 364 00:23:10,641 --> 00:23:11,175 THINKING ABOUT. 365 00:23:11,175 --> 00:23:13,277 THANK YOU TO EVERYBODY FOR 366 00:23:13,277 --> 00:23:13,778 BRINGING US TOGETHER. 367 00:23:13,778 --> 00:23:21,886 I'M EXCITED TO BE HERE. 368 00:23:23,387 --> 00:23:24,088 >> GOOD MORNING. 369 00:23:24,088 --> 00:23:24,922 THANK YOU FOR HAVING ME. 370 00:23:24,922 --> 00:23:35,466 I'M A CITIZEN OF THE UNITED HOMA 371 00:23:36,667 --> 00:23:47,111 NATION AND I'M A U.S. VETERAN. 372 00:23:50,114 --> 00:23:53,617 THIS IS THE LOSS OUR COMMUNITIES 373 00:23:53,617 --> 00:23:53,918 EXPERIENCE. 374 00:23:53,918 --> 00:23:54,819 THAT'S THE ESSENCE OF MY 375 00:23:54,819 --> 00:23:58,789 RESEARCH LOOKING AT HOW THE 376 00:23:58,789 --> 00:24:01,659 ENVIRONMENTAL CHANGES COASTAL 377 00:24:01,659 --> 00:24:02,626 EROSION, PURPOSEFUL 378 00:24:02,626 --> 00:24:03,694 ENVIRONMENTAL DESTRUCTION 379 00:24:03,694 --> 00:24:05,496 IMPACTS, INDIGENOUS CULTURE AND 380 00:24:05,496 --> 00:24:15,639 HEALTH. 381 00:24:18,108 --> 00:24:21,879 I DON'T HAVE MY RESEARCH ON HERE 382 00:24:21,879 --> 00:24:26,984 JUST ACKNOWLEDGING THE PEOPLE 383 00:24:26,984 --> 00:24:27,284 MENTORED ME. 384 00:24:27,284 --> 00:24:29,653 SO THANK YOU. 385 00:24:29,653 --> 00:24:31,755 >> GOOD MORNING MY NAME IS 386 00:24:31,755 --> 00:24:33,757 JESSICA BLANCHARD AT THE 387 00:24:33,757 --> 00:24:39,630 UNIVERSITY OF OKLAHOMA IN 388 00:24:39,630 --> 00:24:39,864 NORMAN. 389 00:24:39,864 --> 00:24:44,034 I'M NON-NATIVE SO I APPRECIATE 390 00:24:44,034 --> 00:24:45,102 THE INVITATION TO BE HERE AND 391 00:24:45,102 --> 00:24:46,237 BEING PART OF THE CONVERSATION. 392 00:24:46,237 --> 00:24:49,473 MOST THE WORK I DO ON THIS 393 00:24:49,473 --> 00:24:52,042 PARTICULAR ISSUE HAS TO DO WITH 394 00:24:52,042 --> 00:24:53,511 THOSE THINGS LISTED THERE THE 395 00:24:53,511 --> 00:24:59,316 CENTER FOR THE ETHICS AND 396 00:24:59,316 --> 00:25:03,521 INDIGENOUS GENOMICS RESEARCH AND 397 00:25:03,521 --> 00:25:05,155 GET TO LEARN FROM EVERYONE HERE 398 00:25:05,155 --> 00:25:08,459 AND VALUE THE PARTNERSHIPS 399 00:25:08,459 --> 00:25:09,193 TREMENDOUSLY. 400 00:25:09,193 --> 00:25:13,831 MY PASSION IS THE GENOMICS AND 401 00:25:13,831 --> 00:25:16,967 ETHICS PROGRAM FOR STUDENTS A 402 00:25:16,967 --> 00:25:17,635 TRAINING PROGRAM FOR INDIGENOUS 403 00:25:17,635 --> 00:25:20,170 STUDENTS AT THE UNIVERSITY OF 404 00:25:20,170 --> 00:25:23,541 OKLAHOMA AND FINALLY ALSO 405 00:25:23,541 --> 00:25:24,575 WORKING WITH THE STUDENTS AND 406 00:25:24,575 --> 00:25:25,075 CANCER CENTER. 407 00:25:25,075 --> 00:25:26,944 THOSE ARE PROJECTS I HAVE GOING 408 00:25:26,944 --> 00:25:29,280 ON THAT HAVE TO DO WITH THE 409 00:25:29,280 --> 00:25:29,847 QUESTION OF INDIGENOUS DATA 410 00:25:29,847 --> 00:25:31,382 SOVEREIGNTY. 411 00:25:31,382 --> 00:25:35,286 I WON'T GO THROUGH ALL OF THEM 412 00:25:35,286 --> 00:25:41,725 AND MY BIGGEST WORK IS MY WORK 413 00:25:41,725 --> 00:25:43,827 AND I'M HAPPIEST WITH MY FAMILY 414 00:25:43,827 --> 00:25:47,131 OR CYCLING OR CAMPING OR SEWING 415 00:25:47,131 --> 00:25:48,699 OR ALL OF THE ABOVE. 416 00:25:48,699 --> 00:25:49,767 I'M ORIGINALLY FROM ALABAMA. 417 00:25:49,767 --> 00:25:51,168 MY HUSBAND IS FROM OKLAHOMA. 418 00:25:51,168 --> 00:25:53,404 WHEN I MOVED TO OKLAHOMA WE 419 00:25:53,404 --> 00:25:55,406 DECIDED TO STAY THERE AND RAISE 420 00:25:55,406 --> 00:25:59,109 OUR FAMILY SO THE GIRLS CAN BE 421 00:25:59,109 --> 00:25:59,977 IN THEIR TRIBAL COMMUNITY. 422 00:25:59,977 --> 00:26:07,017 THEY'RE IN CENTRAL OKLAHOMA 423 00:26:07,017 --> 00:26:09,920 ABSENTEE SHONI COMMUNITY. 424 00:26:09,920 --> 00:26:20,097 >> ALOHA. 425 00:26:30,040 --> 00:26:31,375 I AM A PROFESSOR AND ASSOCIATE 426 00:26:31,375 --> 00:26:33,811 CHAIR OF THE OFFICE OF PUBLIC 427 00:26:33,811 --> 00:26:36,213 HEALTH STUDIES AT UNIVERSITY OF 428 00:26:36,213 --> 00:26:37,014 HAWAI'I. 429 00:26:37,014 --> 00:26:40,117 I'M A SETTLER OF HAWAI'I. 430 00:26:40,117 --> 00:26:42,386 I'M FROM KOREA AND 1.5 431 00:26:42,386 --> 00:26:48,826 GENERATION BORN IN KOREA, MOVED 432 00:26:48,826 --> 00:26:51,095 TO AND YOU SEE THE MOUNTAINS 433 00:26:51,095 --> 00:26:57,468 THERE AND I AM ALSO A PART OF 434 00:26:57,468 --> 00:27:00,838 OUR BOARD MEMBER BY A NATIVE 435 00:27:00,838 --> 00:27:02,406 HAWAIIAN ORGANIZATIONS AND HERE 436 00:27:02,406 --> 00:27:05,542 WITH MY COMMUNITY PARTNER AND 437 00:27:05,542 --> 00:27:08,712 MENTOR AND TOGETHER WE WORK ON 438 00:27:08,712 --> 00:27:15,853 THE ISLAND OF OAHU WE DO 439 00:27:15,853 --> 00:27:17,321 SOVEREIGNTY PROGRAMS TOGETHER 440 00:27:17,321 --> 00:27:23,360 AND WE HAVE GROWN TOGETHER AND 441 00:27:23,360 --> 00:27:25,129 ENGAGE EVERYDAY COMMUNITY 442 00:27:25,129 --> 00:27:25,929 MEMBERS ON DOING RESEARCH AND 443 00:27:25,929 --> 00:27:27,965 INFORMING RESEARCH AND MAKING 444 00:27:27,965 --> 00:27:28,999 SURE EVERYTHING WE DO IS 445 00:27:28,999 --> 00:27:29,933 COMMUNITY DRIVEN AND CULTURALLY 446 00:27:29,933 --> 00:27:38,909 GROUNDED. 447 00:27:38,909 --> 00:27:43,480 AND THERE'S LAND-BASED 448 00:27:43,480 --> 00:27:45,916 ACTIVITIES RESTORING SEAWEED AND 449 00:27:45,916 --> 00:27:46,617 PERFORMING TRADITIONAL MEDICINE 450 00:27:46,617 --> 00:27:48,886 AND SO THIS IS A WAY FOR THE 451 00:27:48,886 --> 00:27:50,354 COMMUNITY FROM THE ACTUAL 452 00:27:50,354 --> 00:27:52,222 COMMUNITY TO HAVE A VOICE IN 453 00:27:52,222 --> 00:27:53,657 WHAT'S GOING ON IN THEIR 454 00:27:53,657 --> 00:27:54,091 COMMUNITY. 455 00:27:54,091 --> 00:27:57,928 I'M ALSO A MOTHER. 456 00:27:57,928 --> 00:28:00,464 MY FAMILY IS THERE. 457 00:28:00,464 --> 00:28:02,332 I ALSO LOVE TO BE IN THE OCEAN 458 00:28:02,332 --> 00:28:03,801 AND BEING WITH NATURE. 459 00:28:03,801 --> 00:28:04,902 THANK YOU SO MUCH FOR HAVING ME 460 00:28:04,902 --> 00:28:05,536 HERE. 461 00:28:05,536 --> 00:28:10,941 THANK YOU. 462 00:28:10,941 --> 00:28:17,514 >> 463 00:28:17,514 --> 00:28:18,115 [SPEAK 464 00:28:18,115 --> 00:28:27,424 [SPEAKING NON-ENGLISH] 465 00:28:27,424 --> 00:28:34,998 HELLO, I'M A CITIZEN OF 466 00:28:34,998 --> 00:28:35,999 MINNESOTA AND WENT TO THE 467 00:28:35,999 --> 00:28:42,773 UNIVERSITY OF MINNESOTA MORE IS. 468 00:28:42,773 --> 00:28:44,608 -- MORRIS. 469 00:28:44,608 --> 00:28:48,746 NOW I'M THE DIRECTOR OF THE 470 00:28:48,746 --> 00:28:49,913 NATIVE BIO CONSORTIUM AND MANAGE 471 00:28:49,913 --> 00:28:52,349 OUR DATA AND RESEARCH AND I 472 00:28:52,349 --> 00:28:54,551 MANAGE THE TRIBAL DATA 473 00:28:54,551 --> 00:28:58,288 REPOSITORY PROJECT AND I 474 00:28:58,288 --> 00:29:00,491 CURRENTLY CALL SALT LAKE CITY 475 00:29:00,491 --> 00:29:01,925 HOME. 476 00:29:01,925 --> 00:29:02,192 THAT'S IT. 477 00:29:02,192 --> 00:29:10,400 THANK YOU. 478 00:29:10,400 --> 00:29:10,734 479 00:29:10,734 --> 00:29:16,073 >> MY NAME IS CARRIE FREEMAN A 480 00:29:16,073 --> 00:29:18,475 TRIBAL MEMBER FROM ALASKA IN THE 481 00:29:18,475 --> 00:29:18,742 INTERIOR. 482 00:29:18,742 --> 00:29:23,814 I CURRENTLY SIT AS THE ALASKAN 483 00:29:23,814 --> 00:29:24,915 AREA REP FOR THE NIH TAC. 484 00:29:24,915 --> 00:29:28,485 AND MY BACKGROUND IS IN NURSING. 485 00:29:28,485 --> 00:29:30,988 I DID FRONTLINE NURSING FOR A 486 00:29:30,988 --> 00:29:33,090 LONG PERIOD OF TIME. 487 00:29:33,090 --> 00:29:37,728 SPECIFIC TO HOMELESS POPULATIONS 488 00:29:37,728 --> 00:29:43,534 WITHIN URBAN AREAS AND PEDIATRIC 489 00:29:43,534 --> 00:29:44,668 HOSPICE, WHICH WAS NOT MY 490 00:29:44,668 --> 00:29:46,537 FAVORITE JOB BUT IT WAS VERY 491 00:29:46,537 --> 00:29:49,273 REWARDING AND I WAS ELECTED AS A 492 00:29:49,273 --> 00:29:53,177 COUNCIL MEMBER FROM MY TRIBE. 493 00:29:53,177 --> 00:29:55,779 I'M EXCITED TO BE HERE AND A MOM 494 00:29:55,779 --> 00:29:58,515 AND GRANDMA AND ALL THESE THINGS 495 00:29:58,515 --> 00:30:00,884 THAT WE'RE GOING TO BE TALKING 496 00:30:00,884 --> 00:30:03,320 ABOUT WHILE WE'RE HERE IS VERY 497 00:30:03,320 --> 00:30:05,889 IMPORTANT TO MY CHILDREN AND MY 498 00:30:05,889 --> 00:30:06,890 GRANT CHILDREN AND GREAT 499 00:30:06,890 --> 00:30:07,758 GRANDCHILDREN WHEN THEY COME 500 00:30:07,758 --> 00:30:07,991 AROUND. 501 00:30:07,991 --> 00:30:10,828 I WANT TO MAKE SURE THAT THE 502 00:30:10,828 --> 00:30:13,096 POLICIES THAT ARE SET IN PLACE 503 00:30:13,096 --> 00:30:14,631 ARE PROTECTIVE OF OUR 504 00:30:14,631 --> 00:30:16,099 COMMUNITIES AND OUR FAMILY 505 00:30:16,099 --> 00:30:17,534 GENERATIONS DOWN THE WAY. 506 00:30:17,534 --> 00:30:26,877 THANK YOU. 507 00:30:26,877 --> 00:30:28,579 >> 508 00:30:28,579 --> 00:30:32,883 [SPEAKING NON-ENGLISH] 509 00:30:32,883 --> 00:30:36,486 I HAVE BEEN ON TRIBAL COUNCIL -- 510 00:30:36,486 --> 00:30:39,156 THIS IS MY THIRD CONSECUTIVE 511 00:30:39,156 --> 00:30:41,291 TERM AND IN FOUR WAS A TRIBAL 512 00:30:41,291 --> 00:30:44,027 CHAIR AND ALSO SIT ON THE TRIBAL 513 00:30:44,027 --> 00:30:45,229 ADVISORY COMMITTEE AS A CHAIR 514 00:30:45,229 --> 00:30:46,563 AND I JUST REALLY APPRECIATE 515 00:30:46,563 --> 00:30:47,531 BEING HERE TODAY. 516 00:30:47,531 --> 00:30:57,708 THANK YOU. 517 00:31:05,582 --> 00:31:15,692 [OFF-MIC] 518 00:31:21,698 --> 00:31:22,132 >> 519 00:31:22,132 --> 00:31:27,537 [SPEAKING NON-ENGLISH] 520 00:31:27,537 --> 00:31:30,374 I'M FROM THE TURTLE CLAN AND MY 521 00:31:30,374 --> 00:31:32,009 NAME IS WHITE BUFFALO WOMAN. 522 00:31:32,009 --> 00:31:33,343 IT'S HARD TO SEE HALF OF WHAT I 523 00:31:33,343 --> 00:31:35,279 PUT UP THERE AND I'LL TRY TO 524 00:31:35,279 --> 00:31:37,314 WING IT AND REMEMBER WHAT I 525 00:31:37,314 --> 00:31:37,581 SAID. 526 00:31:37,581 --> 00:31:39,716 SO I AM AN ALTERNATE FOR FROM 527 00:31:39,716 --> 00:31:40,584 THE BEMIDJI AREA. 528 00:31:40,584 --> 00:31:45,656 THIS IS THE FIRST TIME BEING AT 529 00:31:45,656 --> 00:31:47,824 ONE OF THE MEETINGS. 530 00:31:47,824 --> 00:31:55,532 I'M AN ENROLLED MEMBER OF THE 531 00:31:55,532 --> 00:32:01,905 SIOUX TRIBE OF CHIPPEWA INDIANS 532 00:32:01,905 --> 00:32:05,909 AND TRIBAL SECRETARY FOR THE 533 00:32:05,909 --> 00:32:08,078 COUNCIL AND IT'S BEEN FORMED TWO 534 00:32:08,078 --> 00:32:10,247 YEARS AGO NOW. 535 00:32:10,247 --> 00:32:11,515 ALSO I AM A LICENSED 536 00:32:11,515 --> 00:32:13,417 PSYCHOLOGIST IN THE STATE OF 537 00:32:13,417 --> 00:32:16,053 MICHIGAN AND CURRENTLY IN THE 538 00:32:16,053 --> 00:32:19,756 PROCESS OF -- WELL, DID OPEN MY 539 00:32:19,756 --> 00:32:21,358 OWN PRIORITY DOULA PRACTICE. 540 00:32:21,358 --> 00:32:23,193 I'M WORKING ON GETTING SOME OF 541 00:32:23,193 --> 00:32:25,929 OUR INDIGENOUS CULTURE INTO 542 00:32:25,929 --> 00:32:29,533 DOULAS AS WELL AS A WRAP AROUND 543 00:32:29,533 --> 00:32:31,268 WITH PSYCHOLOGY SERVICES AS 544 00:32:31,268 --> 00:32:31,468 WELL. 545 00:32:31,468 --> 00:32:34,805 THE PICTURE ON THE LEFT IS 546 00:32:34,805 --> 00:32:38,542 MYSELF AND MY FIVE CHILDREN. 547 00:32:38,542 --> 00:32:43,280 I DO HAVE FIVE CHILDREN FROM 11 548 00:32:43,280 --> 00:32:44,314 TO 21. 549 00:32:44,314 --> 00:32:48,352 I'M ALSO A GRANDMOTHER TO A 550 00:32:48,352 --> 00:32:49,920 9-MONTH-OLD GRANDSON. 551 00:32:49,920 --> 00:32:54,124 I ALSO HAVE FOUR CHIHUAHUAS 552 00:32:54,124 --> 00:32:55,659 WHICH MAKES EVERYBODY LIKE 553 00:32:55,659 --> 00:32:57,694 WHAT -- IT'S A WHOLE CHIHUAHUA 554 00:32:57,694 --> 00:32:59,563 FAMILY, MOM, DAD AND TWO BABIES. 555 00:32:59,563 --> 00:33:01,531 I DIDN'T HAVE THE HEART TO GIVE 556 00:33:01,531 --> 00:33:05,535 THE BABIES AWAY I HAVE TWO CATS 557 00:33:05,535 --> 00:33:08,005 AND FOUR CHICKENS AND YES I LIVE 558 00:33:08,005 --> 00:33:09,906 UP IN THE UPPER PENINSULA OF 559 00:33:09,906 --> 00:33:12,042 MICHIGAN. 560 00:33:12,042 --> 00:33:13,844 IT'S VERY RURAL AND I CAN HAVE 561 00:33:13,844 --> 00:33:15,512 MY CHICKENS IN THE BACK WITH ME 562 00:33:15,512 --> 00:33:16,880 IF I WANT. 563 00:33:16,880 --> 00:33:21,084 THE PICTURE ON MYSELF IS MY SON, 564 00:33:21,084 --> 00:33:23,353 GRANDSON AND FATHER AND MOTHER 565 00:33:23,353 --> 00:33:24,955 AND MY GRANDSON, WILLIAM, 566 00:33:24,955 --> 00:33:26,390 COMPLETED FIVE GENERATIONS. 567 00:33:26,390 --> 00:33:28,492 MY GRANDMOTHER IS ACTUALLY 568 00:33:28,492 --> 00:33:31,762 ALMOST 88 YEARS OLD. 569 00:33:31,762 --> 00:33:35,532 SO VERY RARE WE COULD GET A 570 00:33:35,532 --> 00:33:36,967 FIVE-GENERATION PICTURE. 571 00:33:36,967 --> 00:33:41,538 SO, YEAH, I'M HERE REPRESENTING 572 00:33:41,538 --> 00:33:43,306 SIOUX TRIBE AND OUR INDIAN 573 00:33:43,306 --> 00:33:44,808 COUNTRY IN THE UPPER PENINSULA 574 00:33:44,808 --> 00:33:47,511 AND EXCITED TO BE HERE AND 575 00:33:47,511 --> 00:33:48,578 BREAKING GLASS CEILINGS AND 576 00:33:48,578 --> 00:33:58,889 MOVING MOUNTAINS. 577 00:34:02,793 --> 00:34:05,996 >> SORRY. 578 00:34:05,996 --> 00:34:16,406 IT'S A LITTLE BIT LATE. 579 00:34:47,504 --> 00:34:49,606 >> I'VE WORKED ON THE COUNCIL OF 580 00:34:49,606 --> 00:34:52,142 BIO COLONIALISM AND LOOK AT THE 581 00:34:52,142 --> 00:34:54,878 INTERSECTION OF GENETIC RESEARCH 582 00:34:54,878 --> 00:34:57,948 AND PROPERTY RIGHTS AND TRASHL 583 00:34:57,948 --> 00:34:59,616 KNOWLEDGE AND SO ON. 584 00:34:59,616 --> 00:35:03,286 AT THE GLOBAL LEVEL WITH 585 00:35:03,286 --> 00:35:03,920 CONVERSATIONS OF INTELLECTUAL 586 00:35:03,920 --> 00:35:05,021 PROPERTY ORGANIZATION. 587 00:35:05,021 --> 00:35:07,190 THE U.N. CONVENTION ON 588 00:35:07,190 --> 00:35:09,593 BIOLOGICAL DIVERSITY AND IN THE 589 00:35:09,593 --> 00:35:12,429 WORK WITH THE NORTHERN AMERICAN 590 00:35:12,429 --> 00:35:14,097 INDIGENOUS PEOPLES CAUCASIAN AND 591 00:35:14,097 --> 00:35:16,500 THIS REMINDS ME A LITTLE BIT OF 592 00:35:16,500 --> 00:35:17,534 THE U.N. PUSHING BUTTONS TO 593 00:35:17,534 --> 00:35:21,438 SPEAK. 594 00:35:21,438 --> 00:35:24,174 THE CENTER OF MY WORLD IS REALLY 595 00:35:24,174 --> 00:35:31,548 MY 10-YEAR-OLD GRANDDAUGHTER. 596 00:35:31,548 --> 00:35:35,352 SHE IS A POW-WOW GIRL NORTHERN 597 00:35:35,352 --> 00:35:38,455 TRADITIONAL BUCK SKIN DANCER AND 598 00:35:38,455 --> 00:35:40,223 JINGLE DANCER AND WE SPEND OUR 599 00:35:40,223 --> 00:35:45,295 TIME ON THE ROAD A LOT AND I'M A 600 00:35:45,295 --> 00:35:48,732 REGALIA MAKER AND ROAD CREW AND 601 00:35:48,732 --> 00:35:50,667 PRIMARY TAKER FOR HER AND SHE'S 602 00:35:50,667 --> 00:35:53,537 10 YEARS OLD NOW. 603 00:35:53,537 --> 00:35:58,575 THANK YOU. 604 00:35:58,575 --> 00:36:05,549 >> GOOD MORNING. 605 00:36:05,549 --> 00:36:12,289 I'M VANESSA AND DENE AND I'M 606 00:36:12,289 --> 00:36:17,294 ENROLLED NAVAJO AND ON MY 607 00:36:17,294 --> 00:36:27,837 MOTHER'S SIDE I'M WINTU AND THE 608 00:36:28,271 --> 00:36:32,776 WIFE THERE AND WE WERE IN HOMER 609 00:36:32,776 --> 00:36:33,410 ALASKA. 610 00:36:33,410 --> 00:36:37,881 TOMMY IS FROM THE BRISTOL BAY 611 00:36:37,881 --> 00:36:39,316 AREA IN SOUTHWEST ALASKA. 612 00:36:39,316 --> 00:36:41,551 I'M BASED IN ANCHORAGE AS A 613 00:36:41,551 --> 00:36:43,987 SENIOR RESEARCHER AT SOUTH 614 00:36:43,987 --> 00:36:47,424 CENTRAL FOUNDATION AND I'VE 615 00:36:47,424 --> 00:36:49,626 WORKED FOR THE ALASKAN NATIVE 616 00:36:49,626 --> 00:36:52,429 PEOPLE IN THE REGIONAL AND 617 00:36:52,429 --> 00:36:54,664 STATEWIDE FOR THE PAST 25 YEARS. 618 00:36:54,664 --> 00:37:01,938 MY WORK IS IN MENTAL HEALTH 619 00:37:01,938 --> 00:37:02,939 DEVELOPMENT OF HEALTH PROGRAMS 620 00:37:02,939 --> 00:37:03,840 AND DISCUSSING WHAT WE'RE 621 00:37:03,840 --> 00:37:07,811 DISCUSSING TODAY, HOW DO WE 622 00:37:07,811 --> 00:37:10,780 UPHOLD THE SOVEREIGNTY OF OUR 623 00:37:10,780 --> 00:37:11,548 FEDERALLY RECOGNIZED TRIBES AND 624 00:37:11,548 --> 00:37:15,852 ALSO GIVEN THAT I'M FROM A 625 00:37:15,852 --> 00:37:17,821 TERMINATED TRIBE UP IN NORTHERN 626 00:37:17,821 --> 00:37:18,989 CALIFORNIA AND YOU CAN SEE SOME 627 00:37:18,989 --> 00:37:20,857 OF MY RELATIVES THERE IN THE 628 00:37:20,857 --> 00:37:23,560 BLACK AND WHITE PHOTO TAKEN IN 629 00:37:23,560 --> 00:37:24,227 SAN FRANCISCO. 630 00:37:24,227 --> 00:37:28,965 THIS IS FROM OUR WINTU PEOPLE 631 00:37:28,965 --> 00:37:29,633 AND SEVERAL OF MY GRANDPARENTS 632 00:37:29,633 --> 00:37:31,434 ARE THERE IN THE PHOTO IN THE 633 00:37:31,434 --> 00:37:31,668 CENTER. 634 00:37:31,668 --> 00:37:33,069 I'M ALSO HERE TO UPHOLD OUR 635 00:37:33,069 --> 00:37:35,005 RIGHTS OF THOSE OF US THAT DON'T 636 00:37:35,005 --> 00:37:37,073 HAVE THAT FEDERALLY RECOGNITION. 637 00:37:37,073 --> 00:37:40,410 I'M CURIOUS HERE IN THESE 638 00:37:40,410 --> 00:37:41,311 CONVERSATIONS HOW TO DISCUSS, 639 00:37:41,311 --> 00:37:47,550 HOW TO DESCRIBE AND HOW TO 640 00:37:47,550 --> 00:37:49,986 PROTECT THE RIGHTS OF OUR PEOPLE 641 00:37:49,986 --> 00:37:52,522 ENROLLED AS WELL AS UNENROLLED 642 00:37:52,522 --> 00:37:53,723 WHEN WE HAVE NO FEDERAL 643 00:37:53,723 --> 00:37:54,491 RECOGNITION STATUS BUT STILL 644 00:37:54,491 --> 00:37:58,228 THAT'S THE VALUE AND NEED TO 645 00:37:58,228 --> 00:38:03,933 HONOR AND RESPECT OUR DATA AND 646 00:38:03,933 --> 00:38:05,735 THE VARIOUS AND VARIED VALUES OF 647 00:38:05,735 --> 00:38:08,838 VARIOUS PEOPLES HERE. 648 00:38:08,838 --> 00:38:11,107 SO SO, THAT BRINGS ME TO THIS 649 00:38:11,107 --> 00:38:11,541 CONFERENCE HERE. 650 00:38:11,541 --> 00:38:13,443 I'M REALLY GRATEFUL TO BE HERE 651 00:38:13,443 --> 00:38:14,411 WITH YOU ALL. 652 00:38:14,411 --> 00:38:20,483 MANY HAVE BEEN MY LONG TIME 653 00:38:20,483 --> 00:38:23,553 FRIENDS, LONG TIME MENTORS IN 654 00:38:23,553 --> 00:38:25,422 THE WORK AND I'VE LOOKING 655 00:38:25,422 --> 00:38:27,190 FORWARD TO GETTING TO KNOW THOSE 656 00:38:27,190 --> 00:38:29,559 I HAVE NOT YET. 657 00:38:29,559 --> 00:38:36,866 THANK YOU FOR THE OPPORTUNITY. 658 00:38:36,866 --> 00:38:37,901 >> 659 00:38:37,901 --> 00:38:45,775 [SPEAKING NON-ENGLISH] 660 00:38:45,775 --> 00:38:50,146 I BRING THIS LEI. 661 00:38:50,146 --> 00:38:56,720 WE HAD A RESEARCH SUMMIT ON THE 662 00:38:56,720 --> 00:38:57,821 ISLAND AND I BRING HELLO TO ALL 663 00:38:57,821 --> 00:38:59,989 OF YOU AND LOOK FORWARD TO 664 00:38:59,989 --> 00:39:00,857 MEETING ALL OF YOU. 665 00:39:00,857 --> 00:39:03,093 I WANTED TO SPEAK ABOUT MY 666 00:39:03,093 --> 00:39:05,362 HUSBAND WHEN PASSED AWAY LAST 667 00:39:05,362 --> 00:39:10,333 YEAR IN JULY ON THE CANOE WITH 668 00:39:10,333 --> 00:39:15,905 ME AND THE PICTURE WITH ALL THE 669 00:39:15,905 --> 00:39:20,910 PEOPLE IS PART OF A GROUP 670 00:39:20,910 --> 00:39:23,546 REFURBISHING SEAWEED IN OUR 671 00:39:23,546 --> 00:39:33,723 COMMUNITY. 672 00:39:34,457 --> 00:39:35,091 >> 673 00:39:35,091 --> 00:39:35,558 [SPEAKING NON-ENGLISH] 674 00:39:35,558 --> 00:39:37,093 WHEN I WAS ASKED TO INTRODUCE 675 00:39:37,093 --> 00:39:38,995 MYSELF I FIGURED THE MOST 676 00:39:38,995 --> 00:39:41,564 IMPORTANT THING WOULD BE TO TALK 677 00:39:41,564 --> 00:39:51,841 WHERE I'M FROM. 678 00:39:57,213 --> 00:39:59,983 MY ANCESTORS CAME FROM THE BIG 679 00:39:59,983 --> 00:40:02,652 ISLAND AND OAHU AND BY SHOW OF 680 00:40:02,652 --> 00:40:03,586 HANDS HOW MANY PEOPLE HAVE BEEN 681 00:40:03,586 --> 00:40:10,527 TO HAWAI'I? 682 00:40:10,527 --> 00:40:11,161 I FIGURED. 683 00:40:11,161 --> 00:40:21,704 PART OF MY FAMILY IS FROM MAUI 684 00:40:21,905 --> 00:40:27,944 AND OHANA AND MY ANCESTORS WERE 685 00:40:27,944 --> 00:40:31,247 OCEAN VOYAGERS. 686 00:40:31,247 --> 00:40:33,483 WE'RE CANOE PEOPLE AND WE'RE 687 00:40:33,483 --> 00:40:34,117 OCEAN PEOPLE. 688 00:40:34,117 --> 00:40:36,252 SO WE'RE USED TO BEING IN THE 689 00:40:36,252 --> 00:40:37,387 WATER. 690 00:40:37,387 --> 00:40:40,924 IT'S FISH OUT OF WATER HERE, 691 00:40:40,924 --> 00:40:41,157 KARINA. 692 00:40:41,157 --> 00:40:45,161 I'M BORN AND RAISED IN OAHU. 693 00:40:45,161 --> 00:40:48,898 FROM A LARGE EXTENDED OHANA AND 694 00:40:48,898 --> 00:40:51,201 FIRST PHYSICIAN IN MY FAMILY. 695 00:40:51,201 --> 00:40:53,536 I'VE HAD THE PRIVILEGE OF BEING 696 00:40:53,536 --> 00:40:55,138 AROUND QUITE A LONG TIME AND 697 00:40:55,138 --> 00:40:56,706 KNOW MANY OF THE PEOPLE HERE. 698 00:40:56,706 --> 00:41:02,345 I'M THE FIRST CHAIR OF THE 699 00:41:02,345 --> 00:41:05,915 DEPARTMENT OF HAWAIIAN AND I 700 00:41:05,915 --> 00:41:08,751 LOVE DOING RESEARCH AND THAT'S 701 00:41:08,751 --> 00:41:11,554 ANY FIRST PASSION BUT I'M AN 702 00:41:11,554 --> 00:41:14,891 ENDOCRINOLOGIST AND DO CLINICAL 703 00:41:14,891 --> 00:41:16,392 EPIDEMIOLOGY WORK AND HEALTH 704 00:41:16,392 --> 00:41:18,428 DISPARITY RESEARCH AND HAPPY TO 705 00:41:18,428 --> 00:41:19,529 SEE SO MANY PEOPLE INDIGENOUS 706 00:41:19,529 --> 00:41:21,798 PEOPLE WORKING IN THIS FIELD. 707 00:41:21,798 --> 00:41:24,067 IT WAS KIND OF LONELY IN THE 708 00:41:24,067 --> 00:41:24,334 BEGINNING. 709 00:41:24,334 --> 00:41:26,569 I'M HAPPY TO BE AROUND SO MANY 710 00:41:26,569 --> 00:41:29,038 FRIENDS AND COLLEAGUES KNOWN AND 711 00:41:29,038 --> 00:41:31,407 UNKNOWN TO ME. 712 00:41:31,407 --> 00:41:33,343 I'M THE FIRST PROFESSOR OF 713 00:41:33,343 --> 00:41:39,716 NATIVE HAWAIIAN HEALTH AT THE 714 00:41:39,716 --> 00:41:42,585 SCHOOL OF MEDICINE AT THE 715 00:41:42,585 --> 00:41:44,721 UNIVERSITY OF HAWAI'I AND HAD 30 716 00:41:44,721 --> 00:41:46,456 YEARS OF FUNDING AT THE 717 00:41:46,456 --> 00:41:48,691 UNIVERSITY OF FUNDING FROM THE 718 00:41:48,691 --> 00:41:52,695 NIH AND MY GOAL REALLY MY 719 00:41:52,695 --> 00:41:55,365 PROFESSIONAL ROLE IS TO SUPPORT 720 00:41:55,365 --> 00:41:57,133 IS THE NEXT GENERATION OF BIO 721 00:41:57,133 --> 00:41:59,102 AND CLINICAL SCIENTISTS. 722 00:41:59,102 --> 00:42:02,705 I'M A NATIVE HAWAIIAN, THIRD 723 00:42:02,705 --> 00:42:04,307 GENERATION CHINESE AND A 724 00:42:04,307 --> 00:42:05,475 PHYSICIAN SCIENTIST AND OCEAN 725 00:42:05,475 --> 00:42:05,742 VOYAGER. 726 00:42:05,742 --> 00:42:07,877 SO WHEN I RETIRE, MY HOPE IS 727 00:42:07,877 --> 00:42:09,913 I'LL BE ON A CANOE GOING AROUND 728 00:42:09,913 --> 00:42:14,984 THE WORLD. 729 00:42:14,984 --> 00:42:24,761 SO MY I'M A MOM OF TWINS AND TWO 730 00:42:24,761 --> 00:42:30,800 OTHER BOYS MY PARTNER IS DR. TED 731 00:42:30,800 --> 00:42:35,538 MAW FROM ALASKA WHO COULDN'T BE 732 00:42:35,538 --> 00:42:41,544 HERE BECAUSE OF OUR TWINS AND I 733 00:42:41,544 --> 00:42:45,214 LIVE IN PAUOA PICTURED THERE 734 00:42:45,214 --> 00:42:47,550 BACK IN THE DAY WHEN IT WAS AN 735 00:42:47,550 --> 00:42:50,820 AGRICULTURAL VALLEY AND THAT'S 736 00:42:50,820 --> 00:42:52,121 OUR ILI. 737 00:42:52,121 --> 00:42:53,923 WE'RE HERE. 738 00:42:53,923 --> 00:42:59,562 I'M HERE REALLY TO WATCH AND 739 00:42:59,562 --> 00:43:01,664 LISTEN AND TAKE IN SOME OF THE 740 00:43:01,664 --> 00:43:03,132 WORK ALL OF YOU HAVE BEEN DOING 741 00:43:03,132 --> 00:43:08,438 OVER THE YEARS AND LEARNING FROM 742 00:43:08,438 --> 00:43:11,374 THAT AND THE ISSUE OF DATA 743 00:43:11,374 --> 00:43:12,742 SOVEREIGNTY IS OUR NEW NIH 744 00:43:12,742 --> 00:43:15,812 MOSAIC COHORT IN HAWAI'I. 745 00:43:15,812 --> 00:43:19,949 WE'RE JUST GETTING OFF THE 746 00:43:19,949 --> 00:43:21,117 GROUND AND WOULD LOVE TO LEARN 747 00:43:21,117 --> 00:43:22,118 FROM YOU AND THE PERSPECTIVES 748 00:43:22,118 --> 00:43:25,021 YOU BRING. 749 00:43:25,021 --> 00:43:30,460 OUR STUDY'S CALLED THE HEALTH 750 00:43:30,460 --> 00:43:30,893 LEGACY STUDY. 751 00:43:30,893 --> 00:43:33,896 WE NEED POLICIES URGENTLY AND 752 00:43:33,896 --> 00:43:37,333 HAVE A NEW NATIVE HAWAIIAN 753 00:43:37,333 --> 00:43:40,870 PACIFIC ISLANDER OFFICE AT NIMHD 754 00:43:40,870 --> 00:43:42,772 AND ARE SEARCH OR NIMHD IS 755 00:43:42,772 --> 00:43:47,543 SEARCHING FOR ITS FIRST DIRECTOR 756 00:43:47,543 --> 00:43:53,549 AND I THINK CAYLA IS PART OF 757 00:43:53,549 --> 00:44:03,993 THAT AND MAHALO FOR THAT. 758 00:44:04,193 --> 00:44:05,628 >> I GUESS I FAILED THE TEST. 759 00:44:05,628 --> 00:44:08,164 I TRIED TO PUT EVERYTHING ON ONE 760 00:44:08,164 --> 00:44:12,335 PAGE. 761 00:44:12,335 --> 00:44:14,103 YOU CAN'T SEE THAT. 762 00:44:14,103 --> 00:44:17,540 >> 763 00:44:17,540 --> 00:44:24,914 [SPEAKING NON-ENGLISH] 764 00:44:24,914 --> 00:44:28,918 I WAS BORN AND RAISED ON THE 765 00:44:28,918 --> 00:44:31,421 ISLAND ON THE WEST SIDE AND I'M 766 00:44:31,421 --> 00:44:41,431 A BIO MEDICAL RESEARCH AND 767 00:44:41,431 --> 00:44:43,966 EPIGENETICIST AND FOCUS ON 768 00:44:43,966 --> 00:44:44,767 UNDERSTANDING GENE ENVIRONMENT 769 00:44:44,767 --> 00:44:46,202 INTERACTIONS THAT UNDER LIE 770 00:44:46,202 --> 00:44:47,537 DISEASE AND DISPARITIES UNDER 771 00:44:47,537 --> 00:44:53,009 THE LENS OF OMICS AND GENETICS 772 00:44:53,009 --> 00:44:53,876 RESEARCH INCLUDING MICROBIOME 773 00:44:53,876 --> 00:44:55,311 RESEARCH AS WELL. 774 00:44:55,311 --> 00:44:59,549 I'M PROUD OF A DIVERSE, 775 00:44:59,549 --> 00:45:01,451 ETHNICALLY DIVERSE INCLUDING 776 00:45:01,451 --> 00:45:02,785 HAWAIIAN STUDENTS HOPEFULLY 777 00:45:02,785 --> 00:45:04,020 RAISING THE NEXT GENERATION AND 778 00:45:04,020 --> 00:45:06,022 RAISING ISSUES BY BRIDGING THE 779 00:45:06,022 --> 00:45:07,623 GAP BETWEEN BASIC SCIENCE AND 780 00:45:07,623 --> 00:45:09,692 CLINICAL RESEARCH AND 781 00:45:09,692 --> 00:45:10,760 TRANSLATIONAL RESEARCH. 782 00:45:10,760 --> 00:45:13,930 I'M REALLY VERY EMOTIONAL TODAY 783 00:45:13,930 --> 00:45:16,399 BEING HERE AMONGST ALL OF AND 784 00:45:16,399 --> 00:45:17,300 GRATEFUL FOR THE OPPORTUNITY. 785 00:45:17,300 --> 00:45:20,837 I STARTED MY WORK AT NIH AND 786 00:45:20,837 --> 00:45:22,638 PREDOCTORAL YEARS AND CONTINUED 787 00:45:22,638 --> 00:45:24,874 OVER MY POSTDOCTORAL YEARS SINCE 788 00:45:24,874 --> 00:45:27,443 1999 AND THE FIRST GATHERING 789 00:45:27,443 --> 00:45:28,611 WITH INDIGENOUS PEOPLES IN ONE 790 00:45:28,611 --> 00:45:29,612 PLACE ALL TOGETHER ON THE CAMPUS 791 00:45:29,612 --> 00:45:33,216 SO I'M HAPPY ABOUT THAT TO SEE 792 00:45:33,216 --> 00:45:36,385 THAT STARTING TO HAPPEN. 793 00:45:36,385 --> 00:45:37,487 I REMEMBER JOINING FILLING OUT 794 00:45:37,487 --> 00:45:39,122 THE HR PAPERWORK AND EVERYTHING 795 00:45:39,122 --> 00:45:41,758 AND YOU HAVE TO FILL OUT RACE 796 00:45:41,758 --> 00:45:43,493 AFFILIATION AND EVERYTHING. 797 00:45:43,493 --> 00:45:45,061 THERE WAS NO NATIVE HAWAIIAN ON 798 00:45:45,061 --> 00:45:47,230 THE LINE AT ALL. 799 00:45:47,230 --> 00:45:50,600 IT CLEARLY WAS WE WERE NOT KNOWN 800 00:45:50,600 --> 00:45:56,539 AND I'M STARTING TO SEE IMPROEFT 801 00:45:56,539 --> 00:45:58,341 IMPROVEMENTS THERE AND STILL 802 00:45:58,341 --> 00:46:01,277 HAVE WORK TO GO AND GRATEFUL TO 803 00:46:01,277 --> 00:46:02,712 GATHER AND HELPING ADDRESS THE 804 00:46:02,712 --> 00:46:04,280 ISSUES ON THE POLICY LEVEL AND 805 00:46:04,280 --> 00:46:07,250 ENABLE THE RESEARCH TO BE 806 00:46:07,250 --> 00:46:10,386 EFFECTIVE IN AND HOW THAT CAN 807 00:46:10,386 --> 00:46:12,021 INTEGRATE IN THE JUST BE 808 00:46:12,021 --> 00:46:13,923 SEPARATED FROM BUT INTERTWINED 809 00:46:13,923 --> 00:46:15,658 OUR CULTURAL PRACTICES AND 810 00:46:15,658 --> 00:46:17,927 COMMUNITY-BASED PRACTICES AND 811 00:46:17,927 --> 00:46:20,196 CULTURAL KNOWLEDGE. 812 00:46:20,196 --> 00:46:21,931 MY GREAT GRANDMOTHER ON THERE 813 00:46:21,931 --> 00:46:24,834 YOU CAN'T REALLY SEE WAS A 814 00:46:24,834 --> 00:46:29,939 LEADER IN HER COMMUNITY, 815 00:46:29,939 --> 00:46:32,308 RESPECTED ELDER AND HAWAIIAN 816 00:46:32,308 --> 00:46:33,810 MEDICINE HEALER AND TAUGHT ME 817 00:46:33,810 --> 00:46:35,211 EVERYTHING I KNEW ABOUT HAWAI'I 818 00:46:35,211 --> 00:46:39,549 AND ITS ROOTS AND HISTORY AND IN 819 00:46:39,549 --> 00:46:42,018 THAT PROCESS I WAS INSPIRED BY 820 00:46:42,018 --> 00:46:44,720 HER WORK BECAUSE I FELT STRONGLY 821 00:46:44,720 --> 00:46:45,788 THAT THIS RELATIONSHIP THAT WE 822 00:46:45,788 --> 00:46:53,162 HAVE AS A PEOPLE IS HEALING. 823 00:46:53,162 --> 00:46:56,666 THE DESCRIBED IT AS TAKING CARE 824 00:46:56,666 --> 00:46:58,501 OF LAND AND IT THE TAKE CARE OF 825 00:46:58,501 --> 00:47:00,636 YOU NOT ONLY AT THE TIME BUT FOR 826 00:47:00,636 --> 00:47:01,771 GENERATIONS TO COME. 827 00:47:01,771 --> 00:47:05,908 IT'S VERY RESOUNDING CONNECTIONS 828 00:47:05,908 --> 00:47:07,844 WITH ALL INDIGENOUS AND THAT 829 00:47:07,844 --> 00:47:09,579 BROUGHT HOME TO ME EVEN IN THE 830 00:47:09,579 --> 00:47:11,714 WORK I DO IN EPIGENETICS BECAUSE 831 00:47:11,714 --> 00:47:14,817 IT'S ANOTHER WAY OF LOOKING AT 832 00:47:14,817 --> 00:47:19,021 THE WORLD FROM THAT POINT OF 833 00:47:19,021 --> 00:47:21,424 VIEW AND THE INTERCONNECTIVITY 834 00:47:21,424 --> 00:47:23,025 FROM THAT VIEW CAN STRENGTHEN 835 00:47:23,025 --> 00:47:24,293 OUR PRACTICES BY INCLUDING 836 00:47:24,293 --> 00:47:25,061 COMMUNITY AND CULTURAL KNOWLEDGE 837 00:47:25,061 --> 00:47:28,197 IN THE PROCESS AND ELEVATES THE 838 00:47:28,197 --> 00:47:29,732 SCIENCE TO A POINT WE ALREADY 839 00:47:29,732 --> 00:47:33,502 KNEW AND WERE WONDERFUL LEADERS 840 00:47:33,502 --> 00:47:34,937 IN RESEARCH AND SCIENCE AND SO 841 00:47:34,937 --> 00:47:36,439 MY PERSONAL GOAL IS TO BRING 842 00:47:36,439 --> 00:47:38,875 THAT BACK TO OUR COMMUNITY AND 843 00:47:38,875 --> 00:47:40,376 BE ABLE TO RAISE THAT NEXT 844 00:47:40,376 --> 00:47:41,611 GENERATION WITH THAT PERSPECTIVE 845 00:47:41,611 --> 00:47:44,580 SO THE RESEARCHER IS DONE BY US, 846 00:47:44,580 --> 00:47:46,382 FOUR US AND OUR KNOWLEDGE NOT 847 00:47:46,382 --> 00:47:49,518 JUST IN A SEPARATE PROCESS. 848 00:47:49,518 --> 00:47:53,556 LOOKING FORWARD TO OUR 849 00:47:53,556 --> 00:48:03,933 DISCUSSION AND MAHALU. 850 00:48:08,337 --> 00:48:09,906 >> 851 00:48:09,906 --> 00:48:12,108 [SPEAKING NON-E 852 00:48:12,108 --> 00:48:12,575 [SPEAKING NON-ENGLISH] 853 00:48:12,575 --> 00:48:13,709 THAT'S MY HOMETOWN RIGHT THERE. 854 00:48:13,709 --> 00:48:20,716 I CAN SEE MY DAD'S HOUSE. 855 00:48:20,716 --> 00:48:22,251 THOSE ARE MY PARENTS. 856 00:48:22,251 --> 00:48:27,623 I FORGOT I PUT ANIMATION, HOT 857 00:48:27,623 --> 00:48:27,823 DANG. 858 00:48:27,823 --> 00:48:30,259 IN THE CORNER IS MY DAD'S DAD 859 00:48:30,259 --> 00:48:32,261 WITH HIS DOING SLED TEAM AND SON 860 00:48:32,261 --> 00:48:36,165 THE BOTTOM LEFT IS MY GRANDMA 861 00:48:36,165 --> 00:48:45,908 AND DAD AS A BABY THERE. 862 00:48:45,908 --> 00:48:50,079 MY FAMILY BUILDS SKIN BOATS AND 863 00:48:50,079 --> 00:48:52,648 THAT'S MY UNCLE AND WE DON'T 864 00:48:52,648 --> 00:48:54,951 HAVE DOING TEAMS ANYMORE AND 865 00:48:54,951 --> 00:48:57,853 WE'RE -- DOG TEAMS AND WE'RE 866 00:48:57,853 --> 00:48:58,821 TIGHTLY CONNECTED TO THE WATER 867 00:48:58,821 --> 00:49:02,291 AND LAND AND I PUT IN A TON 868 00:49:02,291 --> 00:49:04,393 ABOUT MY RESEARCH AND I FEEL WE 869 00:49:04,393 --> 00:49:05,928 DON'T HAVE TIME AND I'M A 870 00:49:05,928 --> 00:49:11,200 MICROBIOME RESEARCHER AND I 871 00:49:11,200 --> 00:49:12,935 DIDN'T WORK WITH INDIGENOUS 872 00:49:12,935 --> 00:49:15,838 BECAUSE OF THE DATA ISSUES AND I 873 00:49:15,838 --> 00:49:16,605 LOOK AT POPULATION VARIATION IN 874 00:49:16,605 --> 00:49:18,975 THE MICROBIOTA AND FIGURE OUT 875 00:49:18,975 --> 00:49:20,509 HOW THE MICROBES ARE AFFECTING 876 00:49:20,509 --> 00:49:21,410 DIFFERENT POPULATIONS OF FISH. 877 00:49:21,410 --> 00:49:23,546 I'M AT THE UNIVERSITY OF 878 00:49:23,546 --> 00:49:23,846 CONNECTICUT. 879 00:49:23,846 --> 00:49:25,848 AN ASSISTANT PROFESSOR AND MY 880 00:49:25,848 --> 00:49:26,849 HANDS ARE SWEATING. 881 00:49:26,849 --> 00:49:29,618 I'M GOING TO STOP TALKING NOW. 882 00:49:29,618 --> 00:49:37,093 THANK YOU. 883 00:49:37,093 --> 00:49:37,927 >> 884 00:49:37,927 --> 00:49:40,730 [SPEAKING NON-ENGLISH] 885 00:49:40,730 --> 00:49:41,597 THANK YOU SO MUCH FOR INVITING 886 00:49:41,597 --> 00:49:46,535 ME. 887 00:49:46,535 --> 00:49:51,207 MY FAMILY IS ON THE RIGHT. 888 00:49:51,207 --> 00:49:52,775 AS THE SAYING GOES YOU'RE ASKED 889 00:49:52,775 --> 00:49:59,515 WHO ARE YOU FROM, AND ON THE 890 00:49:59,515 --> 00:50:01,751 LEFT WHO YOU WALK WITH, I'LL 891 00:50:01,751 --> 00:50:03,686 TELL YOU WHO YOU ARE. 892 00:50:03,686 --> 00:50:08,791 I'VE WALKED MANY YEARS WITH A 893 00:50:08,791 --> 00:50:12,528 TRIBE AND BEING A PUBLIC HEALTH 894 00:50:12,528 --> 00:50:13,496 PRACTITIONER AND RESEARCHER AND 895 00:50:13,496 --> 00:50:17,533 BE IN SERVICE TO THE TRIBE OF 896 00:50:17,533 --> 00:50:18,601 NATIVE NATIONS IN THE U.S. AS 897 00:50:18,601 --> 00:50:20,336 WELL AS TRIBAL ORGANIZATIONS. 898 00:50:20,336 --> 00:50:25,808 I'M AN ASSOCIATE DIRECTOR WITH 899 00:50:25,808 --> 00:50:26,876 SEVEN DIRECTIONS. 900 00:50:26,876 --> 00:50:29,278 BUILDING OUT AN INDIGENOUS 901 00:50:29,278 --> 00:50:29,912 SYSTEMS ALIGNMENT PROGRAM 902 00:50:29,912 --> 00:50:31,380 INCLUDING DATA STEWARDSHIP AND 903 00:50:31,380 --> 00:50:35,618 ALSO A NEWLY APPOINTED ASSISTANT 904 00:50:35,618 --> 00:50:37,753 RESEARCHER, ASSISTANT PROFESSOR. 905 00:50:37,753 --> 00:50:39,155 I'VE ALWAYS FED INTO THE 906 00:50:39,155 --> 00:50:39,622 PRACTICE. 907 00:50:39,622 --> 00:50:43,726 I HAVE A DRPH. 908 00:50:43,726 --> 00:50:45,494 SO INDIGENOUS DATA SOVEREIGNTY 909 00:50:45,494 --> 00:50:47,263 HAS BEEN HEART OF THE WORK SINCE 910 00:50:47,263 --> 00:50:52,835 MY FIRST NIH RESEARCH WAS WITH 911 00:50:52,835 --> 00:50:55,037 THE ARCH NARCH DOING TRADITIONAL 912 00:50:55,037 --> 00:50:56,472 HEALING MANAGEMENT STUDY FOR 913 00:50:56,472 --> 00:50:56,739 DIABETES. 914 00:50:56,739 --> 00:50:59,575 SO I HAVE BEEN A MEMBER OF THE 915 00:50:59,575 --> 00:51:02,011 U.S. INDIGENOUS DATA SOVEREIGNTY 916 00:51:02,011 --> 00:51:03,813 NETWORK FOR MANY MANY YEARS 917 00:51:03,813 --> 00:51:05,681 REVIEWING THE CARE PRINCIPLES IN 918 00:51:05,681 --> 00:51:06,682 THE EARLY TIMES. 919 00:51:06,682 --> 00:51:10,352 THAT REALLY COMING FROM A NEED 920 00:51:10,352 --> 00:51:11,787 TO BE ABLE TO DO OUR PRACTICE 921 00:51:11,787 --> 00:51:15,257 AND TO HAVE MEANINGFUL DATA AND 922 00:51:15,257 --> 00:51:17,059 GROUNDED IN WHAT I WAS LEARNING 923 00:51:17,059 --> 00:51:21,230 NOT ONLY FROM MY OWN COMMUNITIES 924 00:51:21,230 --> 00:51:22,898 BUT AS A TRIBAL EMPLOYEE WITH 925 00:51:22,898 --> 00:51:24,533 THE TRADITIONAL HEALING PROGRAM 926 00:51:24,533 --> 00:51:26,469 AND THE PUBLIC HEALTH AT THE 927 00:51:26,469 --> 00:51:28,104 HEALTH CENTER AT THE DEPARTMENT 928 00:51:28,104 --> 00:51:32,408 TRYING TO FLUSH OUT TRIBAL DATA 929 00:51:32,408 --> 00:51:33,042 SYSTEMS INFRASTRUCTURE AS WELL. 930 00:51:33,042 --> 00:51:35,611 I'M KIND OF STARTING TO BUBBLE 931 00:51:35,611 --> 00:51:39,081 BUT HAVE A LONG HISTORY FOR THE 932 00:51:39,081 --> 00:51:40,483 WORK AND PASSION FOR IT AND 933 00:51:40,483 --> 00:51:44,820 JOINED THE NETWORK FOR THE 934 00:51:44,820 --> 00:51:45,821 COLLABORATORY FOR INDIGENOUS 935 00:51:45,821 --> 00:51:47,123 DATA GOVERNANCE AND MOVING INTO 936 00:51:47,123 --> 00:51:48,757 THE POLICY SPACE WITH THE 937 00:51:48,757 --> 00:51:50,493 ASPIRATION FOR DOING THE WORK IN 938 00:51:50,493 --> 00:51:54,530 RECOGNITION FOR ALL OF OUR 939 00:51:54,530 --> 00:51:55,564 INDIGENOUS PEOPLES. 940 00:51:55,564 --> 00:51:58,100 AND THAT'S ME. 941 00:51:58,100 --> 00:52:01,904 THANK YOU. 942 00:52:01,904 --> 00:52:03,405 >> GOOD MORNING. 943 00:52:03,405 --> 00:52:09,011 MY NAME IS MYRA PARKER. 944 00:52:09,011 --> 00:52:13,916 I'M FROM A RESERVATION IN NORTH 945 00:52:13,916 --> 00:52:14,950 DAKOTA AND FROM THE UNIVERSITY 946 00:52:14,950 --> 00:52:16,318 OF WASHINGTON SCHOOL OF MEDICINE 947 00:52:16,318 --> 00:52:18,821 AND THE DIRECTOR OF SEVEN 948 00:52:18,821 --> 00:52:20,823 DIRECTIONS WHICH IS A TRIBAL 949 00:52:20,823 --> 00:52:22,224 PUBLIC HEALTH INSTITUTE BASED AT 950 00:52:22,224 --> 00:52:22,391 U-W. 951 00:52:22,391 --> 00:52:23,592 IT'S A PRIVILEGE TO BE WITH YOU 952 00:52:23,592 --> 00:52:23,826 ALL. 953 00:52:23,826 --> 00:52:29,265 THANK YOU FOR THE INVITATION. 954 00:52:29,265 --> 00:52:32,268 WE'VE BEEN WORKING ON SORCHT 955 00:52:32,268 --> 00:52:37,907 ISSUES IN DATA OWNER -- 956 00:52:37,907 --> 00:52:38,974 SOVEREIGNTY ISSUES AND DATA 957 00:52:38,974 --> 00:52:41,277 OWNERSHIP AND I WAS PART TRIBAL 958 00:52:41,277 --> 00:52:44,246 COUNCIL OF ARIZONA NARCH, NATIVE 959 00:52:44,246 --> 00:52:45,781 AMERICAN RESEARCH CENTER FOR 960 00:52:45,781 --> 00:52:46,015 HEALTH. 961 00:52:46,015 --> 00:52:49,185 PART OF OUR FUNDING REQUIREMENT 962 00:52:49,185 --> 00:52:51,287 WAS WE HAVE CONTRACT WITH THE 963 00:52:51,287 --> 00:52:53,355 UNIVERSITY OF ARIZONA. 964 00:52:53,355 --> 00:52:55,691 THIS IS IN THE EARLY 2000s 965 00:52:55,691 --> 00:52:57,927 AROUND DATA OWNERSHIP. 966 00:52:57,927 --> 00:53:00,529 AND IT TOOK US 18 MONTHS TO 967 00:53:00,529 --> 00:53:01,697 NEGOTIATE THAT WITH THE 968 00:53:01,697 --> 00:53:03,432 UNIVERSITY OF ARIZONA. 969 00:53:03,432 --> 00:53:05,267 THEY WEREN'T REALLY THRILLED 970 00:53:05,267 --> 00:53:05,568 ABOUT THAT. 971 00:53:05,568 --> 00:53:11,473 IT'S EXCITING TO BE HERE TO TALK 972 00:53:11,473 --> 00:53:18,647 ABOUT POLICIES THAT CAN 973 00:53:18,647 --> 00:53:21,717 HOPEFULLY IDENTIFY THAT AND 974 00:53:21,717 --> 00:53:23,118 STREAMLINE THE PROCESS SO WE 975 00:53:23,118 --> 00:53:24,954 DON'T HAVE TO RECREATE THE WHEEL 976 00:53:24,954 --> 00:53:26,088 EVERY TIME WE WANT TO DO 977 00:53:26,088 --> 00:53:26,355 RESEARCH. 978 00:53:26,355 --> 00:53:32,328 THANK YOU. 979 00:53:32,328 --> 00:53:32,494 >> 980 00:53:32,494 --> 00:53:42,104 [SPEAKING NON-ENGLISH] 981 00:53:42,104 --> 00:53:44,473 >> I'M RETIRED HERE AT NIH FOR 982 00:53:44,473 --> 00:53:45,341 20 YEARS. 983 00:53:45,341 --> 00:53:49,878 I SPENT FIVE YEARS AT HHMI. 984 00:53:49,878 --> 00:53:52,848 I TEACH ONE CLASS AN ETHICS 985 00:53:52,848 --> 00:53:54,516 CLASS AT THE UNIVERSITY OF 986 00:53:54,516 --> 00:53:55,050 OREGON. 987 00:53:55,050 --> 00:53:58,754 ONE CONNECTION TO THIS WORK IS I 988 00:53:58,754 --> 00:54:01,991 SERVED ON THE NHGRI A NUMBER OF 989 00:54:01,991 --> 00:54:02,191 YEARS. 990 00:54:02,191 --> 00:54:08,264 THANK YOU. 991 00:54:08,264 --> 00:54:09,932 >> I'M THE ORIGINATOR OF THE 992 00:54:09,932 --> 00:54:16,472 NARCH PROGRAM. 993 00:54:24,980 --> 00:54:25,080 AS 994 00:54:25,080 --> 00:54:27,516 >> I'M A PROFESSOR AT THE 995 00:54:27,516 --> 00:54:30,219 UNIVERSITY OF COLORADO IN THE 996 00:54:30,219 --> 00:54:31,220 CENTERS FOR AMERICAN INDIAN 997 00:54:31,220 --> 00:54:32,288 ALASKA NATIVE HEALTH. 998 00:54:32,288 --> 00:54:33,355 I'VE BEEN THERE 27 YEARS. 999 00:54:33,355 --> 00:54:39,295 I STARTED AS A PREDOCTORAL 1000 00:54:39,295 --> 00:54:41,063 CLINICAL PSYCHOLOGY INTERN AND 1001 00:54:41,063 --> 00:54:42,097 WILL BE RETIRING FROM THERE AT 1002 00:54:42,097 --> 00:54:47,436 THE END OF NOVEMBER AND JOINING 1003 00:54:47,436 --> 00:54:51,807 THE INSTITUTE OF NEBRASKA IN 1004 00:54:51,807 --> 00:54:52,107 OMAHA. 1005 00:54:52,107 --> 00:54:56,278 I AM VERY EXCITED FOR EXPANDING 1006 00:54:56,278 --> 00:54:58,814 OUR RELATIONAL NET IN THE WORK 1007 00:54:58,814 --> 00:55:04,586 WE DO ON BEHALF OF TRIBAL 1008 00:55:04,586 --> 00:55:05,387 COMMUNITIES WITH RESPECT TO 1009 00:55:05,387 --> 00:55:10,259 CHILDREN'S EARLY DEVELOPMENT. 1010 00:55:10,259 --> 00:55:13,896 I'M A CITIZEN OF A TRIBE AND THE 1011 00:55:13,896 --> 00:55:16,932 PICTURE I CHOSE ON THE LEFT 1012 00:55:16,932 --> 00:55:19,335 THOUGH CAYLA ADVISED NOT TO 1013 00:55:19,335 --> 00:55:20,536 OVERTHINK THE SLIDE I THOUGHT 1014 00:55:20,536 --> 00:55:23,172 ABOUT WHAT PICTURES TO INCLUDE 1015 00:55:23,172 --> 00:55:29,144 AND THE PICTURE ON THE LEFT IS 1016 00:55:29,144 --> 00:55:32,548 PICTURE TAKEN AFTER LAST YEAR'S 1017 00:55:32,548 --> 00:55:33,582 NATIVE CHILDREN'S RESEARCH 1018 00:55:33,582 --> 00:55:34,149 EXCHANGE CONFERENCE. 1019 00:55:34,149 --> 00:55:39,788 IT'S A CONFERENCE WE HOST. 1020 00:55:39,788 --> 00:55:43,559 WE DIRECT THE NRRE PROGRAM AT 1021 00:55:43,559 --> 00:55:46,462 THE UNIVERSITY OF COLORADO 1022 00:55:46,462 --> 00:55:49,665 FUNDED BY NIDA FOR A LONG TIME. 1023 00:55:49,665 --> 00:55:51,867 THIS IS MY ACADEMIC FAMILY AND 1024 00:55:51,867 --> 00:55:54,503 MY ACADEMIC HOME AND A NUMBER OF 1025 00:55:54,503 --> 00:55:57,039 YOU AROUND THE TABLE ARE PART OF 1026 00:55:57,039 --> 00:55:58,741 THAT FAMILY. 1027 00:55:58,741 --> 00:56:01,443 AND OUR WORK WITH TRIBAL 1028 00:56:01,443 --> 00:56:02,411 COMMUNITIES HAPPENS IN 1029 00:56:02,411 --> 00:56:04,346 RELATIONSHIP AND THROUGH 1030 00:56:04,346 --> 00:56:06,782 RELATIONSHIP AND SO THESE 1031 00:56:06,782 --> 00:56:08,751 RELATIONSHIPS THAT I'VE 1032 00:56:08,751 --> 00:56:11,420 CULTIVATED WITH PRACTITIONERS, 1033 00:56:11,420 --> 00:56:13,722 RESEARCHERS EARLY CAREER 1034 00:56:13,722 --> 00:56:16,125 SCHOLARS, LATER CAREER SCHOLARS, 1035 00:56:16,125 --> 00:56:17,493 PEOPLE WHO STUDY EARLY 1036 00:56:17,493 --> 00:56:21,163 DEVELOPMENT, ADOLESCENT 1037 00:56:21,163 --> 00:56:22,898 DEVELOPMENT, THEY'RE THE 1038 00:56:22,898 --> 00:56:26,635 GREATEST BLESSING OF MY LIFE 1039 00:56:26,635 --> 00:56:28,904 REALLY AND I JUST, YEAH, I'M 1040 00:56:28,904 --> 00:56:32,241 HERE TO BE IN RELATIONSHIP WITH 1041 00:56:32,241 --> 00:56:33,909 ALL OF YOU AND THINK THROUGH 1042 00:56:33,909 --> 00:56:35,911 THESE IMPORTANT ISSUES WITH 1043 00:56:35,911 --> 00:56:37,946 RESPECT TO INDIGENOUS DATA 1044 00:56:37,946 --> 00:56:38,247 SOVEREIGNTY. 1045 00:56:38,247 --> 00:56:45,687 THANK YOU. 1046 00:56:45,687 --> 00:56:47,389 >> GOOD MORNING, AGAIN. 1047 00:56:47,389 --> 00:56:55,831 BOB WASACKE AND I'M OKLAHOMA. 1048 00:56:55,831 --> 00:56:57,866 THERE ARE 39 TRIBES THAT HAVE 1049 00:56:57,866 --> 00:56:59,268 THEIR HEADQUARTERS IN OKLAHOMA. 1050 00:56:59,268 --> 00:57:03,272 I THINK MAYBE ONLY A COUPLE OF 1051 00:57:03,272 --> 00:57:04,973 WHICH ARE ACTUALLY ORIGINAL AND 1052 00:57:04,973 --> 00:57:07,176 BEEN RELOCATED FROM OTHER PARTS 1053 00:57:07,176 --> 00:57:08,377 OF THE COUNTRY. 1054 00:57:08,377 --> 00:57:13,015 OKLAHOMA IS UNIQUE IN THE WAY 1055 00:57:13,015 --> 00:57:14,917 WE'RE CONFIGURED AS FAR AS OUR 1056 00:57:14,917 --> 00:57:16,351 TRIBES GO. 1057 00:57:16,351 --> 00:57:21,089 MANY TRIBES WE'RE NOT 1058 00:57:21,089 --> 00:57:26,995 HOMOGENEOUS AT ALL AND I WORK 1059 00:57:26,995 --> 00:57:33,402 WITH THE CHICKASAW NATION IN 1060 00:57:33,402 --> 00:57:34,770 OKLAHOMA BUT MY HOMELAND IS FROM 1061 00:57:34,770 --> 00:57:37,706 THE YELLOW PART THERE IN 1062 00:57:37,706 --> 00:57:38,807 SOUTHWESTERN OKLAHOMA. 1063 00:57:38,807 --> 00:57:43,779 I WANTED TO SHARE A FEW PICTURES 1064 00:57:43,779 --> 00:57:44,813 AND MY DAD IS IN THE LOWER 1065 00:57:44,813 --> 00:57:45,080 CORNER. 1066 00:57:45,080 --> 00:57:49,918 THE ONE NEXT TO HIM ARE MY GREAT 1067 00:57:49,918 --> 00:57:50,619 GRANDPARENTS. 1068 00:57:50,619 --> 00:57:56,124 THIS IS PADLOCK WAS CHANGED SOME 1069 00:57:56,124 --> 00:57:59,595 MAY KNOW THE NAME PULAH WAS A 1070 00:57:59,595 --> 00:58:04,099 WELL KNOWN PHOTOGRAPHER AND HAD 1071 00:58:04,099 --> 00:58:11,607 SKWHIBTS -- EXHIBITS HERE AT 1072 00:58:11,607 --> 00:58:15,344 THE SMITHSONIAN AND THERE'S MY 1073 00:58:15,344 --> 00:58:17,312 GREAT GRANDMOTHER AND MARRIED 1074 00:58:17,312 --> 00:58:18,780 SISTERS AND HAD ANOTHER WIFE AND 1075 00:58:18,780 --> 00:58:20,349 THERE'S NOT MANY PICTURES OF 1076 00:58:20,349 --> 00:58:24,486 THEM TOGETHER THEY PROBABLY HAVE 1077 00:58:24,486 --> 00:58:25,220 THEM SEPARATE. 1078 00:58:25,220 --> 00:58:28,790 AND WE SPENT TIME AT MY 1079 00:58:28,790 --> 00:58:31,593 GRANDPARENTS HOUSE AND THEY 1080 00:58:31,593 --> 00:58:32,828 CALLED HER GRANDMA AND SHE LIVED 1081 00:58:32,828 --> 00:58:35,063 IN THAT HOME AND SHE WAS SCARY 1082 00:58:35,063 --> 00:58:42,337 WHEN I WAS 5 OAR -- OR 6 YEARS 1083 00:58:42,337 --> 00:58:45,140 OLD AND THEY'RE MOTHER WAS A 1084 00:58:45,140 --> 00:58:50,379 CAPTAIN FROM MEXICO. 1085 00:58:50,379 --> 00:58:55,250 THEY WERE SPANISH DESCENT BUT 1086 00:58:55,250 --> 00:59:00,255 WERE BLOND HAIRED AND BLUE EYED 1087 00:59:00,255 --> 00:59:03,725 AND THAT'S MY GRANDFATHER HAD 1088 00:59:03,725 --> 00:59:06,094 TWO WIVES AND I'M GLAD THAT 1089 00:59:06,094 --> 00:59:06,695 TRADITION STOPS. 1090 00:59:06,695 --> 00:59:14,770 THAT'S MY DAD'S FATHER AND MY 1091 00:59:14,770 --> 00:59:15,737 GRANDMOTHER AND THAT'S ALSO MY 1092 00:59:15,737 --> 00:59:16,838 GRANDFATHER ON THE FAR LEFT. 1093 00:59:16,838 --> 00:59:19,942 HE WAS A U.S. DEPUTY MARSHAL FOR 1094 00:59:19,942 --> 00:59:23,712 MANY MANY YEARS IN CENTRAL AND 1095 00:59:23,712 --> 00:59:29,251 WESTERN OKLAHOMA. 1096 00:59:29,251 --> 00:59:31,386 SO, WHAT I'M DOING NOW IS THE 1097 00:59:31,386 --> 00:59:32,521 DIRECTOR OF RESEARCH OF PUBLIC 1098 00:59:32,521 --> 00:59:34,790 HEALTH FOR THE CHICKASAW NATION 1099 00:59:34,790 --> 00:59:37,626 AND VERY ACTIVE IN IRB WORK. 1100 00:59:37,626 --> 00:59:47,469 I'M A REGISTERED NURSE AND BIO 1101 00:59:47,469 --> 00:59:50,272 ETHICIST AND I'M AT THIS MODERN 1102 00:59:50,272 --> 00:59:51,406 FACILITY AND IT'S VERY LARGE AND 1103 00:59:51,406 --> 00:59:53,308 WE'RE GETTING TO BUILD A NEW ONE 1104 00:59:53,308 --> 00:59:56,178 OUTSIDE OF OKLAHOMA CITY ON 1105 00:59:56,178 --> 00:59:57,913 CHICKASAW LAND WILL BE TRIPLE 1106 00:59:57,913 --> 00:59:59,815 THE SIZE OF THIS ONE AND WILL BE 1107 00:59:59,815 --> 01:00:00,849 A HUGE MEDICAL CENTER. 1108 01:00:00,849 --> 01:00:02,918 THIS IS MY FAMILY. 1109 01:00:02,918 --> 01:00:08,890 MY WIFE, PEGGY, AND DAUGHTER 1110 01:00:08,890 --> 01:00:09,091 LILY. 1111 01:00:09,091 --> 01:00:10,592 MY DAUGHTER WAS 16 WHEN I LEFT 1112 01:00:10,592 --> 01:00:13,729 SO I'M NOT LOOKING FORWARD TO 1113 01:00:13,729 --> 01:00:15,497 GOING BACK ANYTIME LEFT AND 1114 01:00:15,497 --> 01:00:16,632 HOPING THEY'RE NOT KILLING EACH 1115 01:00:16,632 --> 01:00:17,733 OTHER WHILE I'M GONE. 1116 01:00:17,733 --> 01:00:18,767 WE'LL SEE. 1117 01:00:18,767 --> 01:00:20,135 ANYWAY, IT'S GREAT TO BE HERE. 1118 01:00:20,135 --> 01:00:22,671 I WORK WITH A LOT OF MY 1119 01:00:22,671 --> 01:00:23,405 COLLEAGUES HERE THAT WE'VE 1120 01:00:23,405 --> 01:00:26,808 WORKED IN THE CENTER FOR ETHICAL 1121 01:00:26,808 --> 01:00:28,377 INDIGENOUS RESEARCH AND IT'S 1122 01:00:28,377 --> 01:00:32,247 ALWAYS GREAT TO BE PART OF A 1123 01:00:32,247 --> 01:00:36,318 DISCUSSION WHEN WE'RE LOOKING AT 1124 01:00:36,318 --> 01:00:37,919 SOVEREIGNTY AND RESEARCH 1125 01:00:37,919 --> 01:00:40,355 PRINCIPLES WITHIN THE CONTEXT OF 1126 01:00:40,355 --> 01:00:40,656 SOVEREIGNTY. 1127 01:00:40,656 --> 01:00:41,623 THANK YOU. 1128 01:00:41,623 --> 01:00:46,094 IT'S GOOD TO BE HERE. 1129 01:00:46,094 --> 01:00:47,896 >> I'M SOMEONE WHO SHOWS UP TO 1130 01:00:47,896 --> 01:00:50,332 THE MOVIE EARLY FOR THE TRAILERS 1131 01:00:50,332 --> 01:00:53,001 AND THESE SLIDES ARE AWESOME. 1132 01:00:53,001 --> 01:00:56,605 I FEEL LIKE I'M SEEING A BUNCH 1133 01:00:56,605 --> 01:00:57,906 OF MOVIE TRAILERS. 1134 01:00:57,906 --> 01:01:06,181 I'M KATIE, I GREW UP IN CORDOVA, 1135 01:01:06,181 --> 01:01:11,253 ALASKA AND MY MOM MET A GUY WHO 1136 01:01:11,253 --> 01:01:14,322 LIVED ALASKAN AND LATER HAD A 1137 01:01:14,322 --> 01:01:15,657 6-MONTH-OLD AND ST. BERNARD AND 1138 01:01:15,657 --> 01:01:18,427 TWO STEP KIDS AND DRIVING UP. 1139 01:01:18,427 --> 01:01:20,095 I'M FROM PRIMARILY A FISHING 1140 01:01:20,095 --> 01:01:20,362 COMMUNITY. 1141 01:01:20,362 --> 01:01:22,364 I LIKE TO SAY WE HAVE THE 1142 01:01:22,364 --> 01:01:24,232 TRIFECTA OF WEIRD AND I MEAN 1143 01:01:24,232 --> 01:01:26,902 THAT IN THE BEST POSSIBLE WAY. 1144 01:01:26,902 --> 01:01:29,638 WE'RE A SMALL RURAL COMMUNITY 1145 01:01:29,638 --> 01:01:31,740 AND IN ALASKA AND HAVE NO ROADS 1146 01:01:31,740 --> 01:01:34,276 AND KEEP THE RIFFRAFF OUT. 1147 01:01:34,276 --> 01:01:36,311 I ALSO SPENT 20 YEARS IN 1148 01:01:36,311 --> 01:01:36,945 WASHINGTON STATE. 1149 01:01:36,945 --> 01:01:40,348 I FEEL LIKE IT'S APPROPRIATE TO 1150 01:01:40,348 --> 01:01:44,419 SAY THAT MY FIRST YEAR IN 1151 01:01:44,419 --> 01:01:47,923 SEATTLE WAS ALSO DR. WALTER'S 1152 01:01:47,923 --> 01:01:51,593 FIRST YEAR AND I WAS IN MY 1153 01:01:51,593 --> 01:01:57,599 SECOND QUARTER IN MY MASTER'S 1154 01:01:57,599 --> 01:01:59,968 AND SURVIVED A QUARTER OF PEOPLE 1155 01:01:59,968 --> 01:02:01,803 DESCRIBING FEELINGS AND 1156 01:02:01,803 --> 01:02:02,437 DISCLOSED PERSONAL STUFF AND 1157 01:02:02,437 --> 01:02:04,372 WASN'T SURE I SIGNED UP FOR THE 1158 01:02:04,372 --> 01:02:07,843 RIGHT THING AND I WENT TO ALASKA 1159 01:02:07,843 --> 01:02:09,911 FOR THE WINTER BREAK AND 1160 01:02:09,911 --> 01:02:11,513 DR. WALTERS WAS MY RESEARCH 1161 01:02:11,513 --> 01:02:13,048 METHODS PROFESSOR AND ONE METHOD 1162 01:02:13,048 --> 01:02:14,282 WAS ASKING PEOPLE TO WRITE DOWN 1163 01:02:14,282 --> 01:02:16,151 WHAT THEY WERE LOOKING FORWARD 1164 01:02:16,151 --> 01:02:17,919 TO IN THE CLASS AND I REMEMBER 1165 01:02:17,919 --> 01:02:19,821 SOMEONE SAYING I'M LOOKING 1166 01:02:19,821 --> 01:02:22,824 FORWARD TO A CLASS THAT'S NOT 1167 01:02:22,824 --> 01:02:24,359 ABOUT POLITICS. 1168 01:02:24,359 --> 01:02:27,529 AND DR. WALTERS SAID IF YOU 1169 01:02:27,529 --> 01:02:28,497 THINK RESEARCH ISN'T ABOUT 1170 01:02:28,497 --> 01:02:29,898 POLITICS YOU'RE IN THE WRONG 1171 01:02:29,898 --> 01:02:30,932 PLACE. 1172 01:02:30,932 --> 01:02:33,101 I THOUGHT THIS MIGHT BE 1173 01:02:33,101 --> 01:02:33,902 INTERESTING. 1174 01:02:33,902 --> 01:02:38,673 SO DEPENDING ON THE DAY OR HOUR 1175 01:02:38,673 --> 01:02:41,309 I MIGHT THANK YOU OR CURSE YOU, 1176 01:02:41,309 --> 01:02:43,612 KARINA, BUT THAT'S WHAT LANDED 1177 01:02:43,612 --> 01:02:47,616 ME IN THIS PLACE WE'RE IN NOW. 1178 01:02:47,616 --> 01:02:53,021 I AM A CITIZEN OF THE CHOCTAW 1179 01:02:53,021 --> 01:02:57,859 NATION OF OKLAHOMA ON MY MOM'S 1180 01:02:57,859 --> 01:03:01,930 SIDE AND AN ASSISTANT PROFESSOR 1181 01:03:01,930 --> 01:03:04,032 AT THE UNIVERSITY OF MICHIGAN. 1182 01:03:04,032 --> 01:03:06,434 AND ON THE NEXT SLIDE ARE THINGS 1183 01:03:06,434 --> 01:03:07,536 TAKING UP BRAIN SPACE THESE 1184 01:03:07,536 --> 01:03:07,836 DAYS. 1185 01:03:07,836 --> 01:03:10,705 I WORK IN FAIR BANKS WITH NATIVE 1186 01:03:10,705 --> 01:03:12,474 FOLKS WHO HAVE CRIMINAL LEGAL 1187 01:03:12,474 --> 01:03:13,642 SYSTEMS INVOLVEMENT. 1188 01:03:13,642 --> 01:03:14,643 WE'RE INTERESTED IN 1189 01:03:14,643 --> 01:03:17,612 UNDERSTANDING SOME FACTORS THAT 1190 01:03:17,612 --> 01:03:22,651 LEAD TO INVOLVEMENT AND ALSO HOW 1191 01:03:22,651 --> 01:03:25,086 TO ADAPT PROGRAMS FOR CONTEXT TO 1192 01:03:25,086 --> 01:03:27,522 REDUCE RECIDIVISM. 1193 01:03:27,522 --> 01:03:30,358 WE'RE TRYING TO DOCUMENT WHAT 1194 01:03:30,358 --> 01:03:31,893 GETS FOLKS INTO SYSTEMS AND HELP 1195 01:03:31,893 --> 01:03:33,929 EXITING THE SYSTEMS. 1196 01:03:33,929 --> 01:03:37,899 I WORK WITH A COLLEAGUE DR 1197 01:03:37,899 --> 01:03:41,903 DR. IVANIC AT THE UNIVERSITY OF 1198 01:03:41,903 --> 01:03:45,307 COLORADO PART OF AN INDIAN 1199 01:03:45,307 --> 01:03:49,277 COMMUNITY AND USE SOCIAL NETWORK 1200 01:03:49,277 --> 01:03:50,612 ANALYSES TO UNDERSTAND 1201 01:03:50,612 --> 01:03:55,483 PROTECTION TO SUICIDE AND 1202 01:03:55,483 --> 01:03:58,053 SUBSTANCE MISUSE AND WE'RE 1203 01:03:58,053 --> 01:04:01,156 STARTING AN RO1 THAT WILL BE A 1204 01:04:01,156 --> 01:04:04,192 LONGITUDINAL STUDY TO LOOK AT 1205 01:04:04,192 --> 01:04:07,562 OPPORTUNITIES FOR PREVENTION AND 1206 01:04:07,562 --> 01:04:10,899 ALSO WORK IN FAIRBANKS IN A 1207 01:04:10,899 --> 01:04:12,634 NATIVE CHARTER SCHOOL DOING 1208 01:04:12,634 --> 01:04:16,204 SIMILAR WORK AROUND SOCIAL 1209 01:04:16,204 --> 01:04:18,406 NETWORKS WITH ALASKAN NATIVE 1210 01:04:18,406 --> 01:04:20,408 STUDENTS AND I'M WORKING IN 1211 01:04:20,408 --> 01:04:23,578 MICHIGAN WITH UNITING THREE 1212 01:04:23,578 --> 01:04:27,849 FIRES AGAINST VIOLENCE A 1213 01:04:27,849 --> 01:04:29,618 STATEWIDE TRIBAL COALITION 1214 01:04:29,618 --> 01:04:30,585 HONORING SERVICES AMONG TRIBAL 1215 01:04:30,585 --> 01:04:32,587 VICTIM ADVOCACY PROGRAMS. 1216 01:04:32,587 --> 01:04:33,822 EXCITED TO HEAR THE REST OF THE 1217 01:04:33,822 --> 01:04:34,489 TRAILERS AND LOOK FORWARD TO THE 1218 01:04:34,489 --> 01:04:40,896 CONVERSATION. 1219 01:04:40,896 --> 01:04:41,129 >> 1220 01:04:41,129 --> 01:04:51,506 [SPEAKING NON-ENGLISH] 1221 01:04:53,375 --> 01:04:55,710 >> I FORGOT TO PUT MY NAME ON 1222 01:04:55,710 --> 01:04:56,544 THE SLIDE. 1223 01:04:56,544 --> 01:04:58,980 I'M FROM THE NAVAJO NATION. 1224 01:04:58,980 --> 01:05:03,551 MAY FAMILY'S FROM ARIZONA AND 1225 01:05:03,551 --> 01:05:06,421 INCLUDED THEM ON THE UPPER LEFT, 1226 01:05:06,421 --> 01:05:09,891 DAD, BROTHER AND MOM. 1227 01:05:09,891 --> 01:05:13,895 MY MOM IS BLIND FROM A DISEASE 1228 01:05:13,895 --> 01:05:17,232 AND MY GRANDMA DID SOMETHING 1229 01:05:17,232 --> 01:05:21,736 TABOO AND IT WAS A DIFFERENT WAY 1230 01:05:21,736 --> 01:05:26,141 OF KNOWING AND INSPIRED ME TO 1231 01:05:26,141 --> 01:05:28,677 THINK ABOUT WESTERN SCIENCE AND 1232 01:05:28,677 --> 01:05:30,278 GENETICS AND NAVAJO UPBRINGINGS 1233 01:05:30,278 --> 01:05:35,216 AND THAT'S A PICTURE. 1234 01:05:35,216 --> 01:05:38,453 I WENT TO COLORADO COLLEGE AND 1235 01:05:38,453 --> 01:05:40,989 MET MY FIANCEE THERE WHO ALSO 1236 01:05:40,989 --> 01:05:43,959 WORKS IN THE WET LAB SPACE AND 1237 01:05:43,959 --> 01:05:45,327 STUDIED MICROBIOLOGY AND 1238 01:05:45,327 --> 01:05:47,162 ANTHROPOLOGY AND NOW A 1239 01:05:47,162 --> 01:05:51,333 FOURTH-YEAR PD CANDIDATE IN THE 1240 01:05:51,333 --> 01:05:57,072 HUMAN CHEMICAL AND GENETICS 1241 01:05:57,072 --> 01:05:59,407 PROGRAM AND THE CLAW INDIGENOUS 1242 01:05:59,407 --> 01:06:05,380 GENOMICS AND ETHICS LABORATORY. 1243 01:06:05,380 --> 01:06:06,214 KATRINA WAS ASKED TO BE HERE AND 1244 01:06:06,214 --> 01:06:09,117 COULDN'T MAKE IT SO I WAS ASKED 1245 01:06:09,117 --> 01:06:11,486 AND I'M HONORED TO MEET OUR 1246 01:06:11,486 --> 01:06:12,220 COLLABORATORS IN PERSON AND TO 1247 01:06:12,220 --> 01:06:13,922 BE PART OF THE CONVERSATIONS. 1248 01:06:13,922 --> 01:06:19,027 AND KATRINA HAS AN ANNUAL LAB 1249 01:06:19,027 --> 01:06:20,562 CAMPING TRIP WHICH I DIDN'T GROW 1250 01:06:20,562 --> 01:06:22,197 UP CAMPING SO IT'S A GREAT 1251 01:06:22,197 --> 01:06:24,132 OPPORTUNITY TO BE OUTDOORS AND 1252 01:06:24,132 --> 01:06:25,834 GET TO KNOW EACH OTHER BETTER. 1253 01:06:25,834 --> 01:06:28,136 RESEARCH SIDE OF THINGS, I 1254 01:06:28,136 --> 01:06:30,805 STUDIED GENETIC VARIATION OF 1255 01:06:30,805 --> 01:06:31,973 NICOTINE METABOLISM AND WORKING 1256 01:06:31,973 --> 01:06:33,375 WITH THE STRONG HEART STUDY AND 1257 01:06:33,375 --> 01:06:35,310 HAVE SEVERAL PROJECTS WITH THE 1258 01:06:35,310 --> 01:06:37,112 NAVAJO NATION AS WELL LOOKING TO 1259 01:06:37,112 --> 01:06:37,979 GATHER PERSPECTIVES FROM 1260 01:06:37,979 --> 01:06:41,649 DIFFERENT INTEREST HOLDERS ON 1261 01:06:41,649 --> 01:06:45,286 THEIR VIEWS ON GENETIC RESEARCH. 1262 01:06:45,286 --> 01:06:47,655 IT'S GREAT TO WORK WITH TRIBAL 1263 01:06:47,655 --> 01:06:48,957 NATIONS INCLUDING MY OWN AND 1264 01:06:48,957 --> 01:06:49,591 GRATEFUL TO BE HERE AND HEAR 1265 01:06:49,591 --> 01:06:49,924 FROM YOU ALL. 1266 01:06:49,924 --> 01:06:57,132 THANK YOU. 1267 01:06:57,132 --> 01:06:57,932 >> 1268 01:06:57,932 --> 01:07:04,639 [SPEAKING NON-ENGLISH] 1269 01:07:04,639 --> 01:07:07,208 I'M EVAN WHITE SHONNI FROM 1270 01:07:07,208 --> 01:07:10,211 OKLAHOMA AND WORK AT THE BRAIN 1271 01:07:10,211 --> 01:07:12,280 INSTITUTE WORKING TO TAKE THE 1272 01:07:12,280 --> 01:07:13,381 TOOLS OF TRANSLATIONAL AND 1273 01:07:13,381 --> 01:07:15,784 NEUROSCIENCE AND MAKE THEM 1274 01:07:15,784 --> 01:07:17,218 ACCESSIBLE TO OUR NATIVE 1275 01:07:17,218 --> 01:07:20,288 COMMUNITIES IN AND AROUND 1276 01:07:20,288 --> 01:07:20,555 OKLAHOMA. 1277 01:07:20,555 --> 01:07:24,759 RIGHT NOW I WORK PRIMARILY WITH 1278 01:07:24,759 --> 01:07:26,728 THE SHONI TRIEP. 1279 01:07:26,728 --> 01:07:28,930 THERE'S THREE DIFFERENT ONES IN 1280 01:07:28,930 --> 01:07:29,197 OKLAHOMA. 1281 01:07:29,197 --> 01:07:39,474 AND THEY USED TO BE CALLED THE 1282 01:07:39,474 --> 01:07:50,285 SHAWNEE AND I'M DES CRCENDED FR 1283 01:07:57,125 --> 01:08:07,368 THE TRIBE AND DEF 1284 01:08:11,139 --> 01:08:13,908 MY BACKGROUND IS A CLINICAL 1285 01:08:13,908 --> 01:08:16,511 PSYCHOLOGIST AND HOLD A LICENSE 1286 01:08:16,511 --> 01:08:17,812 IN OKLAHOMA AS WELL AND I'M 1287 01:08:17,812 --> 01:08:20,381 HONORED TO BE HERE AMONG ALL OF 1288 01:08:20,381 --> 01:08:20,748 YOU. 1289 01:08:20,748 --> 01:08:23,451 MANY OF MY HEROES I ONLY MET 1290 01:08:23,451 --> 01:08:27,055 THROUGH YOU'RE WRITINGS ARE IN 1291 01:08:27,055 --> 01:08:27,522 THE ROOM. 1292 01:08:27,522 --> 01:08:29,257 SO HAPPY TO BE PART OF THE 1293 01:08:29,257 --> 01:08:29,891 CONVERSATION AND HOPEFULLY HAVE 1294 01:08:29,891 --> 01:08:40,235 SOMETHING TO OFFER. 1295 01:08:45,440 --> 01:08:53,114 >> I'M SUFFERING POWER POINT 1296 01:08:53,114 --> 01:08:53,781 FATIGUE AND 1297 01:08:53,781 --> 01:09:00,221 [SPEAKING NON-ENGLISH] 1298 01:09:00,221 --> 01:09:01,723 CURRENTLY I'M ASSISTANT 1299 01:09:01,723 --> 01:09:03,024 PROFESSOR AT ARIZONA STATE 1300 01:09:03,024 --> 01:09:04,292 UNIVERSITY IN THE SCHOOL OF 1301 01:09:04,292 --> 01:09:05,827 HEALTH SCIENCES. 1302 01:09:05,827 --> 01:09:09,531 I'M TRAINED AS A HUMAN GENETIC 1303 01:09:09,531 --> 01:09:11,666 EPIDEMIOLOGIST WITH A MASTER'S 1304 01:09:11,666 --> 01:09:18,473 IN PUBLIC HEALTH AND BIOETHICS. 1305 01:09:18,473 --> 01:09:26,981 ORIGINALLY DID MY Ph.D. AT 1306 01:09:26,981 --> 01:09:29,817 VANDERBILT AT THE SAME TIME 1307 01:09:29,817 --> 01:09:32,387 WHICH I DON'T RECOMMEND IT BUT 1308 01:09:32,387 --> 01:09:33,922 THERE'S NO STATE OR FEDERALLY 1309 01:09:33,922 --> 01:09:35,823 RECOGNIZED TRIBE SO MY LIFE LONG 1310 01:09:35,823 --> 01:09:36,958 DREAM WAS AFTER TRANSITIONING 1311 01:09:36,958 --> 01:09:38,326 FROM A CAREER AT THE BENCH WHERE 1312 01:09:38,326 --> 01:09:40,528 I PATENTED SEVERAL THINGS AND 1313 01:09:40,528 --> 01:09:47,368 DID CANCER BIOLOGY, ETCETERA AND 1314 01:09:47,368 --> 01:09:49,871 FOR A BRIEF MOMENT I LEFT 1315 01:09:49,871 --> 01:09:52,407 HOPKINS TO GO BACK TO ASU TO 1316 01:09:52,407 --> 01:09:54,576 PURSUE A DEGREE AS A LAWYER 1317 01:09:54,576 --> 01:09:56,744 BECAUSE IF YOU'RE DENE AND GO TO 1318 01:09:56,744 --> 01:09:58,513 SCHOOL YOU BECOME A DOCTOR OR 1319 01:09:58,513 --> 01:10:01,482 LAWYER OR ENGINEER OR TEACHER 1320 01:10:01,482 --> 01:10:02,750 NOT A SCIENTIST. 1321 01:10:02,750 --> 01:10:06,721 SO I WAS PURSUING MY MASTER'S IN 1322 01:10:06,721 --> 01:10:11,426 BIOETHICS AND IT WAS UPSETTING 1323 01:10:11,426 --> 01:10:14,829 TO REALIZE HOW COLONIAL GENOMICS 1324 01:10:14,829 --> 01:10:16,264 WAS. 1325 01:10:16,264 --> 01:10:17,699 BEING IN THE SMACK DAB OF THE 1326 01:10:17,699 --> 01:10:22,036 BIG DATA ERA THINKING ABOUT THE 1327 01:10:22,036 --> 01:10:24,939 INJUSTICES AND COLLECTIVIZING 1328 01:10:24,939 --> 01:10:27,108 OUR GENOMIC DATA FELT LIKE A 1329 01:10:27,108 --> 01:10:28,843 WORSE SCALE THAN THE BENCH WITH 1330 01:10:28,843 --> 01:10:33,081 CELL LINES AND THAT MADE ME 1331 01:10:33,081 --> 01:10:35,416 BECOME ENRAGED AND WANTED TO 1332 01:10:35,416 --> 01:10:37,385 PURSUE A DEGREE WHICH IS NOT A 1333 01:10:37,385 --> 01:10:39,487 GOOD REASON TO BEGIN BUT A LONG 1334 01:10:39,487 --> 01:10:42,090 TERM CAREER ENDEAVOR BUT I'M 1335 01:10:42,090 --> 01:10:44,092 GRATEFUL BECAUSE IT EVENTUALLY 1336 01:10:44,092 --> 01:10:46,427 BROUGHT ME TO THE NORTH DAKOTA 1337 01:10:46,427 --> 01:10:48,696 AND SOUTH DAKOTA WORKING WITH A 1338 01:10:48,696 --> 01:10:50,198 COUPLE TRIBAL COMMUNITIES THERE 1339 01:10:50,198 --> 01:10:51,966 WHERE I'M NOW A COMMUNITY WITH 1340 01:10:51,966 --> 01:10:55,436 MANY OF MY FRIENDS, COLLEAGUES 1341 01:10:55,436 --> 01:10:58,539 AND INDIGENOUS GENOMICISTS SOME 1342 01:10:58,539 --> 01:11:00,908 HERE AND CO-FOUNDED THE DATA 1343 01:11:00,908 --> 01:11:02,977 CONSORTIUM AND JOE WHO IS NEXT 1344 01:11:02,977 --> 01:11:04,479 I'LL LET HIM EXPAND MORE ON 1345 01:11:04,479 --> 01:11:04,712 THAT. 1346 01:11:04,712 --> 01:11:06,180 ALSO I THINK ONE OF THE THINGS 1347 01:11:06,180 --> 01:11:09,417 THAT I'D LIKE TO TALK ABOUT MORE 1348 01:11:09,417 --> 01:11:13,921 IS NOT JUST COLLECTIVIZING 1349 01:11:13,921 --> 01:11:20,428 INDIGENOUS DATA SOVEREIGNTY BUT 1350 01:11:20,428 --> 01:11:21,629 MOVING TOWARDS SOVEREIGNTY AND 1351 01:11:21,629 --> 01:11:24,132 THERE'S A BOOK COMING OUT FROM 1352 01:11:24,132 --> 01:11:25,967 THE AMERICAN INDIAN POLICY WE'RE 1353 01:11:25,967 --> 01:11:29,904 AT A POINT WHERE INDIGENOUS 1354 01:11:29,904 --> 01:11:31,205 COMMUNITIES MEMBERS ARE BUILDING 1355 01:11:31,205 --> 01:11:32,674 DIGITAL DATA INFRASTRUCTURES AND 1356 01:11:32,674 --> 01:11:35,877 WE'RE DOING THE RESEARCH FOR 1357 01:11:35,877 --> 01:11:39,280 OURSELVES BY OURSELVES AND WHEN 1358 01:11:39,280 --> 01:11:41,516 WE THINK ABOUT DATA AS THE 1359 01:11:41,516 --> 01:11:43,184 RESOURCE THAT IT IS WE ARE 1360 01:11:43,184 --> 01:11:44,952 BUILDING SOMETHING THAT IS 1361 01:11:44,952 --> 01:11:49,090 SUSTAINING FOR COMMUNITIES FOR 1362 01:11:49,090 --> 01:11:49,924 RESEARCH CAPACITY AND TRAINING 1363 01:11:49,924 --> 01:11:53,895 AND REDUCING OUR RELIANCE ON 1364 01:11:53,895 --> 01:11:57,732 FEDERALLY SPONSORED -- SORRY, 1365 01:11:57,732 --> 01:12:00,968 NIH AND OTHER COLONIALLY 1366 01:12:00,968 --> 01:12:02,370 MEDIATED DATA BACKBONES. 1367 01:12:02,370 --> 01:12:03,504 THAT'S THE FUTURE I'M HOPING OUR 1368 01:12:03,504 --> 01:12:04,672 NEXT GENERATION WILL CONTINUE TO 1369 01:12:04,672 --> 01:12:07,508 MOVE FORWARD AND I THINK THAT IS 1370 01:12:07,508 --> 01:12:10,311 WHERE WE GET LONG SUSTAINING 1371 01:12:10,311 --> 01:12:10,712 CHANGES IN HEALTH. 1372 01:12:10,712 --> 01:12:17,285 [SPEAKING NON-ENGLISH] 1373 01:12:17,285 --> 01:12:17,885 >> 1374 01:12:17,885 --> 01:12:28,262 [SPEAKING NON-ENGLISH] 1375 01:12:38,172 --> 01:12:40,007 I'M FROM MEXICO. 1376 01:12:40,007 --> 01:12:41,409 MY FAMILY CAME TO THE UNITED 1377 01:12:41,409 --> 01:12:42,543 STATES IN 1910. 1378 01:12:42,543 --> 01:12:45,313 THE SAME TIME THERE WAS A CIVIL 1379 01:12:45,313 --> 01:12:48,449 WAR IN MEXICO IN THE MIDWEST 1380 01:12:48,449 --> 01:12:51,052 CHICAGO LAKE MICHIGAN REGION. 1381 01:12:51,052 --> 01:12:52,954 THEY WERE BUSTING UP UNIONS. 1382 01:12:52,954 --> 01:12:56,491 THEY BROUGHT A BUNCH OF 1383 01:12:56,491 --> 01:12:58,993 INDIGENOUS PEOPLE FROM THE ALTA 1384 01:12:58,993 --> 01:13:00,628 PLANO OF MEXICO TO BREAK THOSE 1385 01:13:00,628 --> 01:13:02,130 STRIKES AND THAT'S HOW MY FAMILY 1386 01:13:02,130 --> 01:13:03,765 CAME TO THE UNITED STATES. 1387 01:13:03,765 --> 01:13:09,904 FROM THE STATE OF MICHOCAN AND 1388 01:13:09,904 --> 01:13:17,278 COPPER CANYON FROM CHIHUAHUA, 1389 01:13:17,278 --> 01:13:20,581 MEXICO SOUTH. 1390 01:13:20,581 --> 01:13:22,316 I'M A LONG-TERM STUDENT. 1391 01:13:22,316 --> 01:13:25,887 I GRADUATE FROM LOYOLA-CHICAGO 1392 01:13:25,887 --> 01:13:28,189 AT THE UW MADISON FOR A LONG 1393 01:13:28,189 --> 01:13:30,458 TIME AT THE VETERINARY SCHOOL 1394 01:13:30,458 --> 01:13:32,794 AND TRANSITIONED TO THE 1395 01:13:32,794 --> 01:13:34,695 DEPARTMENT OF SURGERY IN MEDICAL 1396 01:13:34,695 --> 01:13:41,836 SCHOOL AND DID WORK IN 1397 01:13:41,836 --> 01:13:43,738 TRANSPLANTING AND STILL AT 1398 01:13:43,738 --> 01:13:46,407 HOPKINS AND EXECUTIVE DIRECTOR 1399 01:13:46,407 --> 01:13:51,779 AND VICE PRESIDENT OF THE BIO 1400 01:13:51,779 --> 01:13:52,246 DATA CONSORTIUM. 1401 01:13:52,246 --> 01:14:02,790 I'M WITH PEOPLE USHERING IN THE 1402 01:14:07,228 --> 01:14:11,098 DATA CONSORTIUM FOR THE RADX 1403 01:14:11,098 --> 01:14:16,370 PROJECT IN URBAN AND RESERVATION 1404 01:14:16,370 --> 01:14:18,539 COMMUNITIES. 1405 01:14:18,539 --> 01:14:23,511 WE'RE ALSO PART OF THE CELLULAR 1406 01:14:23,511 --> 01:14:28,516 PROCESS AND HUMAN PANGENOME 1407 01:14:28,516 --> 01:14:30,685 REFERENCE WITH STEPHANIE CARROLL 1408 01:14:30,685 --> 01:14:32,954 AND OTHERS AND PART OF BRIDGE TO 1409 01:14:32,954 --> 01:14:35,890 A.I. AND DIFFERENT ASPECTS 1410 01:14:35,890 --> 01:14:40,394 INCLUDING ETHICS AND TOOLS 1411 01:14:40,394 --> 01:14:46,567 BUILDING AND ALSO MATT AND I I 1412 01:14:46,567 --> 01:14:49,904 EXECUTING A NARCH GRANT FOR 1413 01:14:49,904 --> 01:14:51,372 WASTE WATER COVID SURVEILLANCE. 1414 01:14:51,372 --> 01:14:53,508 WE'RE NOT ONLY JUST BUILDING THE 1415 01:14:53,508 --> 01:14:55,309 DIGITAL INFRASTRUCTURE BUT 1416 01:14:55,309 --> 01:14:57,912 BUILDING THE TECHNICAL CAPACITY. 1417 01:14:57,912 --> 01:15:02,383 WE BUILT A CLIA LAB WITH HELP 1418 01:15:02,383 --> 01:15:04,151 AND GOT OUR CERTIFICATION WHICH 1419 01:15:04,151 --> 01:15:09,223 IS NO EASY TASK AND WE'RE TRYING 1420 01:15:09,223 --> 01:15:11,993 TO BUILD STUFF LOCALLY SO TRIBES 1421 01:15:11,993 --> 01:15:13,928 CAN HAVE MORE CONTROL OF THEIR 1422 01:15:13,928 --> 01:15:14,128 DATA. 1423 01:15:14,128 --> 01:15:16,764 THANK YOU. 1424 01:15:16,764 --> 01:15:17,565 >> ALL RIGHT. 1425 01:15:17,565 --> 01:15:20,134 THAT BRINGS US TO AN END OF OUR 1426 01:15:20,134 --> 01:15:21,736 INTRODUCTIONS FOR OUR INVITED 1427 01:15:21,736 --> 01:15:22,003 ATTENDEES. 1428 01:15:22,003 --> 01:15:23,271 I WANT TO THANK YOU ALL AGAIN 1429 01:15:23,271 --> 01:15:24,639 FOR SHARING THE INTRODUCTIONS. 1430 01:15:24,639 --> 01:15:31,312 IT WAS FANTASTIC TO HEAR ABOUT 1431 01:15:31,312 --> 01:15:31,479 YOU. 1432 01:15:31,479 --> 01:15:33,381 WE'LL TAKE A MOMENT TO 1433 01:15:33,381 --> 01:15:34,348 INTRODUCE THE REST OF THE NIH 1434 01:15:34,348 --> 01:15:35,917 FOLKS WHO WALKED IN THE ROOM SO 1435 01:15:35,917 --> 01:15:37,919 YOU KNOW WHOSE LISTENING TO YOU 1436 01:15:37,919 --> 01:15:40,588 TODAY AND THEN TAKE A BRIEF 1437 01:15:40,588 --> 01:15:44,258 BREAK BEFORE WE LET DR. WALTERS 1438 01:15:44,258 --> 01:15:45,626 GIVE A QUICK PRESENTATION AND 1439 01:15:45,626 --> 01:15:47,762 THEN WE'LL JUMP INTO OUR PANELS. 1440 01:15:47,762 --> 01:15:48,863 YOU'LL HAVE AN OPPORTUNITY TO 1441 01:15:48,863 --> 01:15:50,698 REFILL YOUR COFFEE AND GET A 1442 01:15:50,698 --> 01:15:53,267 SNACK AND USE THE RESTROOM 1443 01:15:53,267 --> 01:15:54,201 BEFORE WE REALLY LOCK IN FOR THE 1444 01:15:54,201 --> 01:15:54,969 REST OF DAY. 1445 01:15:54,969 --> 01:16:00,708 WITH THAT I'LL TURN IT OVER TO 1446 01:16:00,708 --> 01:16:00,975 KAYLA. 1447 01:16:00,975 --> 01:16:02,109 WOULD YOU LIKE TO INTRODUCE 1448 01:16:02,109 --> 01:16:07,248 YOURSELF. 1449 01:16:07,248 --> 01:16:14,388 [OFF-MIC] 1450 01:16:14,388 --> 01:16:17,124 >> UI'M EXCITED TO BE HERE AND 1451 01:16:17,124 --> 01:16:20,661 PART OF THE NATIVE PACIFIC 1452 01:16:20,661 --> 01:16:21,862 ISLANDER HEALTH RESEARCH OFFICE 1453 01:16:21,862 --> 01:16:23,898 AND HONORED TO BE HERE WITH YOU 1454 01:16:23,898 --> 01:16:28,235 ALL. 1455 01:16:28,235 --> 01:16:35,509 >> GOOD MORNING I'M KATHY PART 1456 01:16:35,509 --> 01:16:38,846 OF THE RESEARCH EFFORT AND 1457 01:16:38,846 --> 01:16:40,581 ENROLLMENT AT THE NATIONAL 1458 01:16:40,581 --> 01:16:43,818 INSTITUTE OF DRUG ABUSE. 1459 01:16:43,818 --> 01:16:48,222 WONDERFUL TO BE HERE AND EXCITED 1460 01:16:48,222 --> 01:16:52,793 FOR THE CONVERSATION AND EXCITED 1461 01:16:52,793 --> 01:16:58,566 TO BE UNDER DR. WALTERS' 1462 01:16:58,566 --> 01:16:59,934 LEADERSHIP AND 1463 01:16:59,934 --> 01:17:10,111 [OFF-MIC] 1464 01:18:29,957 --> 01:18:30,791 >> WE'RE A LITTLE BIT AHEAD OF 1465 01:18:30,791 --> 01:18:34,028 TIME SO WE'RE GOING TO TAKE A 1466 01:18:34,028 --> 01:18:45,413 QUICK BREAK. 1467 01:18:45,413 --> 01:18:46,347 THANK YOU SO MUCH FOR THOSE 1468 01:18:46,347 --> 01:18:47,682 INCREDIBLE INTRODUCTIONS THIS 1469 01:18:47,682 --> 01:18:48,016 MORNING. 1470 01:18:48,016 --> 01:18:51,619 I WANTED TO JUST GIVE A MOMENT 1471 01:18:51,619 --> 01:18:53,655 TO ALLOW OUR NEW GUESTS WHO HAVE 1472 01:18:53,655 --> 01:18:54,155 ARRIVED. 1473 01:18:54,155 --> 01:18:55,857 DO YOU WANT TO INTRODUCE 1474 01:18:55,857 --> 01:19:05,934 YOURSELF? 1475 01:19:05,934 --> 01:19:16,110 [OFF-MIC] 1476 01:19:39,567 --> 01:19:40,868 WE'RE ACTUALLY ON SCHEDULE. 1477 01:19:40,868 --> 01:19:45,373 I WANT TO JUST SAY WOW. 1478 01:19:45,373 --> 01:19:50,945 WE ALSO STARTED HALF HOUR EARLY. 1479 01:19:50,945 --> 01:19:53,715 SO, I'M GOING TO SHARE A LITTLE 1480 01:19:53,715 --> 01:19:55,783 BIT ABOUT WHAT WE'VE BEEN DOING 1481 01:19:55,783 --> 01:20:03,858 TO THIS POINT AT THE THRO OFFICE 1482 01:20:03,858 --> 01:20:05,860 AND THINGS WE'VE BEEN THINKING 1483 01:20:05,860 --> 01:20:08,062 ABOUT AND WITH OUR INTRODUCTIONS 1484 01:20:08,062 --> 01:20:09,931 TODAY I DON'T WANT PEOPLE TO 1485 01:20:09,931 --> 01:20:12,500 FEEL SHY OR EXPRESS YOURSELVES. 1486 01:20:12,500 --> 01:20:14,035 DON'T WORRY ABOUT NIH AND SAY 1487 01:20:14,035 --> 01:20:15,169 WHAT YOU NEED TO SAY. 1488 01:20:15,169 --> 01:20:16,437 THAT'S WHY WE'RE HERE AND I WANT 1489 01:20:16,437 --> 01:20:18,973 TO HEAR WHAT YOU HAVE TO SAY AND 1490 01:20:18,973 --> 01:20:20,174 WHAT YOU BRING TO THE 1491 01:20:20,174 --> 01:20:21,542 TABLE.THAT'S WHY YOU'VE BEEN 1492 01:20:21,542 --> 01:20:21,809 INVITED. 1493 01:20:21,809 --> 01:20:26,147 IT'S IMPORTANT WE HAVE 1494 01:20:26,147 --> 01:20:26,881 TRANSPARENT COMMUNICATION. 1495 01:20:26,881 --> 01:20:28,349 LET'S JUST DO IT RESPECTFULLY 1496 01:20:28,349 --> 01:20:30,318 BUT WE'RE COOL, PLEASE SAY WHAT 1497 01:20:30,318 --> 01:20:31,853 NEEDS TO BE SAID. 1498 01:20:31,853 --> 01:20:34,055 IT'S IMPORTANT. 1499 01:20:34,055 --> 01:20:36,157 OUR COMMUNITIES DEPEND ON THAT. 1500 01:20:36,157 --> 01:20:39,861 THAT'S CRITICAL AND WHY WE'RE 1501 01:20:39,861 --> 01:20:41,562 HERE. 1502 01:20:41,562 --> 01:20:43,998 A LITTLE BIT JUST TO 1503 01:20:43,998 --> 01:20:45,366 CONTEXTUALIZE AND EVEN WHEN I 1504 01:20:45,366 --> 01:20:49,537 TOOK THE POSITION I DIDN'T KNOW 1505 01:20:49,537 --> 01:20:50,705 HOW GIGANTIC NIH REALLY WAS AND 1506 01:20:50,705 --> 01:20:57,145 TO GIVE AN IDEA WE'RE ONE OF 16 1507 01:20:57,145 --> 01:20:58,279 OFFICES IN THE OFFICE OF THE 1508 01:20:58,279 --> 01:21:00,148 DIRECTOR AND YOU SAW DR. TARA 1509 01:21:00,148 --> 01:21:08,956 SCHWETZ IS OUR BOSS THE DIRECTOR 1510 01:21:08,956 --> 01:21:11,926 FOR STRATEGIC PLANNING AND 1511 01:21:11,926 --> 01:21:12,360 INITIATIVES. 1512 01:21:12,360 --> 01:21:13,161 I'VE BEEN HERE YEAR AND A HALF 1513 01:21:13,161 --> 01:21:14,262 AND IT'S TAKEN THAT LONG TO SAY 1514 01:21:14,262 --> 01:21:19,400 THAT. 1515 01:21:19,400 --> 01:21:22,637 WE WORK AND COORDINATE AND DO 1516 01:21:22,637 --> 01:21:23,838 COLLABORATION WITH THE 27 1517 01:21:23,838 --> 01:21:27,842 INSTITUTES AND CENTERS OF THE 1518 01:21:27,842 --> 01:21:30,311 NATIONAL INSTITUTES OF HEALTH. 1519 01:21:30,311 --> 01:21:32,246 YOU KNOW HOW BIG THEY ARE AND 1520 01:21:32,246 --> 01:21:36,150 THE NCI AND THE NATIONAL CANCER 1521 01:21:36,150 --> 01:21:37,285 START FOR THE INSTITUTE OF 1522 01:21:37,285 --> 01:21:39,520 MENTAL HEALTH OR DRUG ABUSE. 1523 01:21:39,520 --> 01:21:41,956 THESE ARE ALL MASSIVE 1524 01:21:41,956 --> 01:21:43,858 ORGANIZATIONS EVEN WITHIN THE 1525 01:21:43,858 --> 01:21:48,863 NIH. 1526 01:21:48,863 --> 01:21:53,034 NIH HAS A BUDGET OF $48 BILLION. 1527 01:21:53,034 --> 01:21:58,739 THE LARGEST PUBLIC HEALTH 1528 01:21:58,739 --> 01:22:04,345 RESEARCH PLACE IN THE WORLD AND 1529 01:22:04,345 --> 01:22:07,215 WE ARE FUNDED THROUGH INTRAMURAL 1530 01:22:07,215 --> 01:22:08,483 RESEARCH AND GIVE IT TO 1531 01:22:08,483 --> 01:22:17,125 COMMUNITIES OR OUTSIDE ENTITIES. 1532 01:22:17,125 --> 01:22:18,493 TO A COMPETITIVE GRANT RESEARCH 1533 01:22:18,493 --> 01:22:22,964 AT MORE THAN 2500 UNIVERSITIES, 1534 01:22:22,964 --> 01:22:23,865 MEDICAL SCHOOLS AND TRIBES AND 1535 01:22:23,865 --> 01:22:25,233 OTHER INSTITUTIONS. 1536 01:22:25,233 --> 01:22:29,003 ABOUT 10% OF THE NIH BUDGET 1537 01:22:29,003 --> 01:22:29,937 SUPPORTS WHAT'S CALL INTRAMURAL 1538 01:22:29,937 --> 01:22:32,507 RESEARCH CONDUCTED BY ABOUT 1539 01:22:32,507 --> 01:22:35,877 6,000 SCIENTISTS IN LABORATORIES 1540 01:22:35,877 --> 01:22:37,311 HER ON THIS CAMPUS AS WELL AS 1541 01:22:37,311 --> 01:22:40,982 OTHER CAMPUSES IN NORTH CAROLINA 1542 01:22:40,982 --> 01:22:45,553 AND MONTANA AND ROCKY MOUNTAIN 1543 01:22:45,553 --> 01:22:48,990 LAB, FOR EXAMPLE AND 1544 01:22:48,990 --> 01:22:49,524 ADMINISTRATIVE FACILITY 1545 01:22:49,524 --> 01:22:50,825 CONSTRUCTION, ADMINISTRATION AND 1546 01:22:50,825 --> 01:22:51,893 OPERATIONAL COSTS. 1547 01:22:51,893 --> 01:22:53,561 THAT'S A LOT OF RESEARCH GOING 1548 01:22:53,561 --> 01:22:57,498 ON AND A LOT OF POTENTIAL IMPACT 1549 01:22:57,498 --> 01:23:01,669 FOR AMERICAN INDIANS AND ALASKA 1550 01:23:01,669 --> 01:23:02,336 NATIVES. 1551 01:23:02,336 --> 01:23:04,972 WE'RE IN THE 16 OFFICES. 1552 01:23:04,972 --> 01:23:07,608 WE'RE LITERALLY THE SYNERGISTIC 1553 01:23:07,608 --> 01:23:09,944 HUB FOR ACTIVITIES AND RESEARCH 1554 01:23:09,944 --> 01:23:11,546 WORKFORCE DEVELOPMENT AT THE 1555 01:23:11,546 --> 01:23:11,712 NIH. 1556 01:23:11,712 --> 01:23:14,248 ANYTHING NATIVE USUALLY HITS OUR 1557 01:23:14,248 --> 01:23:15,550 OFFICE FIRST AND THAT INCLUDES 1558 01:23:15,550 --> 01:23:15,917 PROBLEMS. 1559 01:23:15,917 --> 01:23:18,686 PROBLEMS IN THE COMMUNITY. 1560 01:23:18,686 --> 01:23:20,488 WE GET THE CALL. 1561 01:23:20,488 --> 01:23:22,757 WE STRATEGICALLY CONSULT AND 1562 01:23:22,757 --> 01:23:23,491 COORDINATE AND COLLABORATE WITH 1563 01:23:23,491 --> 01:23:27,595 THE NIH CENTERS AND INSTITUTES 1564 01:23:27,595 --> 01:23:29,530 AND ALSO VERY MUCH AN OUTWARDLY 1565 01:23:29,530 --> 01:23:31,299 FACING OFFICE IN MANY WAYS MORE 1566 01:23:31,299 --> 01:23:32,400 SO BECAUSE OF THE TRUST 1567 01:23:32,400 --> 01:23:36,304 RESPONSIBILITY AND RELATIONSHIP 1568 01:23:36,304 --> 01:23:41,976 THAT WE ARE MANDATED TO UPHOLD 1569 01:23:41,976 --> 01:23:45,112 AND TO DO THIS THROUGH A 1570 01:23:45,112 --> 01:23:48,482 CULTURALLY CREDIBLE AND 1571 01:23:48,482 --> 01:23:49,417 MEANINGFUL INDIGENOUS DRIVEN 1572 01:23:49,417 --> 01:23:51,152 SCIENCE AND THIS IS ABOUT 1573 01:23:51,152 --> 01:23:52,553 INDIGENOUS DRIVEN SCIENCE. 1574 01:23:52,553 --> 01:23:53,955 NOT JUST INDIGENOUS. 1575 01:23:53,955 --> 01:23:55,856 IT'S NOT ENOUGH TO BE DONE BY 1576 01:23:55,856 --> 01:23:57,892 NATIVE PEOPLE BUT CENTERING OUR 1577 01:23:57,892 --> 01:24:02,997 INDIGENOUS LEADERS AND CULTURAL 1578 01:24:02,997 --> 01:24:03,831 KNOWLEDGES AND ALL BEING AT THE 1579 01:24:03,831 --> 01:24:06,000 CENTER OF THE WORK. 1580 01:24:06,000 --> 01:24:08,636 AND THAT'S THE REASON THE FIRST 1581 01:24:08,636 --> 01:24:10,504 YEAR WE HAVE INDIGENOUS 1582 01:24:10,504 --> 01:24:11,138 KNOWLEDGE EMPOWERING SCIENCE IS 1583 01:24:11,138 --> 01:24:19,680 ONE OF OUR THEMES. 1584 01:24:19,680 --> 01:24:23,718 IT'S ABOUT HARNESSING OUR POWER 1585 01:24:23,718 --> 01:24:26,020 THROUGH NIH AND DOING THAT 1586 01:24:26,020 --> 01:24:27,788 THROUGH FOUR MAIN ACTIVITIES. 1587 01:24:27,788 --> 01:24:31,025 ONE IS ADVANCING INDIGENOUS 1588 01:24:31,025 --> 01:24:32,593 RESEARCH WANTING TO SUPPORT MORE 1589 01:24:32,593 --> 01:24:35,529 RESEARCH NOT ONLY FOR OUR 1590 01:24:35,529 --> 01:24:36,931 COMMUNITIES BUT ONE THAT CENTERS 1591 01:24:36,931 --> 01:24:39,300 INDIGENOUS METHODOLOGIES AND 1592 01:24:39,300 --> 01:24:41,168 KNOWLEDGES AND SO FORTH. 1593 01:24:41,168 --> 01:24:43,838 THE OTHER ELEMENT WE DO IS TO 1594 01:24:43,838 --> 01:24:44,705 CULTIVATE CAPACITY. 1595 01:24:44,705 --> 01:24:47,275 THAT MEANS INTERNALLY AT THE NIH 1596 01:24:47,275 --> 01:24:49,310 WE DO A LOT OF EDUCATION AND 1597 01:24:49,310 --> 01:24:51,846 TRAINING AT THE NIH AND 1598 01:24:51,846 --> 01:24:53,347 CONSULTATION WITH OUR COLLEAGUES 1599 01:24:53,347 --> 01:24:59,854 TO HELP BRING THEM UP TO SPEED 1600 01:24:59,854 --> 01:25:05,126 ABOUT AMERICAN INDIAN PROCESSES 1601 01:25:05,126 --> 01:25:07,428 AND DEVELOPING A RESEARCH 1602 01:25:07,428 --> 01:25:08,195 WORKFORCE. 1603 01:25:08,195 --> 01:25:12,099 WE HAVE 1,000 Ph.D.'S IN THE 1604 01:25:12,099 --> 01:25:16,637 ROOM THREE WOULD BE AMERICAN 1605 01:25:16,637 --> 01:25:18,739 INDIAN OR ALASKAN NATIVE AND GO 1606 01:25:18,739 --> 01:25:26,347 INTO PRIMARILY SERVICE ORIENTED 1607 01:25:26,347 --> 01:25:27,715 OR SOME KIND OF SERVICE 1608 01:25:27,715 --> 01:25:31,852 EXPERIENCE AND FEW IN THE 1609 01:25:31,852 --> 01:25:35,022 RESEARCH TRACK AND NEED PEOPLE 1610 01:25:35,022 --> 01:25:36,490 IN THIS AND WORKFORCE IS OUR 1611 01:25:36,490 --> 01:25:41,362 THIRD AGENDA AND OUR OFFICE IS 1612 01:25:41,362 --> 01:25:42,530 RESPONSIBLE FOR HOLDING TRIBAL 1613 01:25:42,530 --> 01:25:43,731 CONSULTATION A GOVERNMENT TO 1614 01:25:43,731 --> 01:25:47,168 GOVERNMENT RELATIONSHIP WITH THE 1615 01:25:47,168 --> 01:25:49,770 TRIBES AND FEDERAL AGENCIES 1616 01:25:49,770 --> 01:25:51,839 FEDERALLY AGENCIES ARE MANDATED 1617 01:25:51,839 --> 01:25:55,142 TO WORK WITH TRIBES. 1618 01:25:55,142 --> 01:25:57,278 WE CAN'T HAVE TRIBAL COMMUNITIES 1619 01:25:57,278 --> 01:26:01,549 WITHOUT ACTUAL CONSULTATION 1620 01:26:01,549 --> 01:26:02,149 TAKING PLACE. 1621 01:26:02,149 --> 01:26:04,018 THAT'S FAIRLY RECENTLY PUT INTO 1622 01:26:04,018 --> 01:26:04,452 PLACE. 1623 01:26:04,452 --> 01:26:07,555 OUR OFFICE IS IN CHARGE OF THAT. 1624 01:26:07,555 --> 01:26:11,158 AND THEN THE PART I GET EXCITED 1625 01:26:11,158 --> 01:26:12,960 ABOUT IS BLAZING NEW PATHS FOR 1626 01:26:12,960 --> 01:26:13,427 STRATEGIC INITIATIVE. 1627 01:26:13,427 --> 01:26:15,663 WE'RE IN ALIGNMENT WITH THE 1628 01:26:15,663 --> 01:26:17,431 OTHER I.C.s THAT MAY BE ISSUES 1629 01:26:17,431 --> 01:26:20,334 THAT COME FROM TRIBAL LISTENING 1630 01:26:20,334 --> 01:26:20,601 SESSIONS. 1631 01:26:20,601 --> 01:26:21,802 WE HOLD LOTS OF LISTENING 1632 01:26:21,802 --> 01:26:22,770 SESSIONS TO HEAR WHAT THEIR 1633 01:26:22,770 --> 01:26:24,972 NEEDS ARE AND WHAT THEY WANT US 1634 01:26:24,972 --> 01:26:26,874 TO PRIORITIZE, WHAT ARE SOME OF 1635 01:26:26,874 --> 01:26:27,842 THE HEALTH ISSUES THAT THEY'RE 1636 01:26:27,842 --> 01:26:29,243 MOST CONCERNED ABOUT AND WE WORK 1637 01:26:29,243 --> 01:26:31,879 WITH THE I.C.s TO BEGIN TO 1638 01:26:31,879 --> 01:26:34,281 DEVELOP INITIATIVES AND GRANTS 1639 01:26:34,281 --> 01:26:35,916 AND MECHANISMS TO BE ABLE TO 1640 01:26:35,916 --> 01:26:37,551 FUND NEW INITIATIVES. 1641 01:26:37,551 --> 01:26:40,087 ONE FOR EXAMPLE THAT'S COMING UP 1642 01:26:40,087 --> 01:26:42,556 WE'RE HAVING A SUMMIT DECEMBER 1643 01:26:42,556 --> 01:26:45,893 18 TO 20th ON THE BIRDIE SCHOOL 1644 01:26:45,893 --> 01:26:49,563 HEALING INITIATIVE TO THINK HOW 1645 01:26:49,563 --> 01:26:51,699 DO WE DEVELOP A HEALTHY RESPONSE 1646 01:26:51,699 --> 01:26:53,167 TO WORK COLLABORATIVELY WITH OUR 1647 01:26:53,167 --> 01:26:55,102 COMMUNITIES TO HELP SUPPORT THEM 1648 01:26:55,102 --> 01:26:56,570 DEVELOPING INTERVENTIONS THAT 1649 01:26:56,570 --> 01:26:58,773 ARE GOING TO BE MEANINGFUL AND 1650 01:26:58,773 --> 01:26:59,573 IMPORTANT FOR THEIR HEALTH AND 1651 01:26:59,573 --> 01:27:03,844 WELL BEING NOT JUST TO ADDRESS 1652 01:27:03,844 --> 01:27:07,081 THE TRAUMA ELEMENTS BUT THINGS 1653 01:27:07,081 --> 01:27:09,550 STOLEN FROM US, LANGUAGE, THOSE 1654 01:27:09,550 --> 01:27:11,852 PARTS OF ELEMENTS AS PART OF OUR 1655 01:27:11,852 --> 01:27:14,021 HEALTH AND WELL BEING. 1656 01:27:14,021 --> 01:27:15,723 IF YOU'RE INTERESTED IN THAT SEE 1657 01:27:15,723 --> 01:27:17,291 ME AT BREAK. 1658 01:27:17,291 --> 01:27:24,532 HAPPY TO TALK ABOUT THAT. 1659 01:27:24,532 --> 01:27:24,799 WHY NOW? 1660 01:27:24,799 --> 01:27:30,604 WE HAVE NEW STAFF AND WE HAD 1661 01:27:30,604 --> 01:27:33,340 LOTS OF CALLS FOR COLLEAGUES 1662 01:27:33,340 --> 01:27:35,009 WAITING FOR A SHIFT IN OUR 1663 01:27:35,009 --> 01:27:35,876 OFFICE. 1664 01:27:35,876 --> 01:27:39,814 WE HAVE LOTS OF QUESTIONS ABOUT 1665 01:27:39,814 --> 01:27:43,551 INTERNATIONAL BIO SPECIMENS AND 1666 01:27:43,551 --> 01:27:44,351 REPOSITORIES, QUESTIONS HOW DO 1667 01:27:44,351 --> 01:27:46,387 WE RETURN DATA TO TRIBES. 1668 01:27:46,387 --> 01:27:51,926 WHAT DO WE DO ABOUT GENOMIC OR 1669 01:27:51,926 --> 01:27:56,730 GENE SEQUENCE DATA. 1670 01:27:56,730 --> 01:28:02,503 THAT'S HOW THE NIH IS. 1671 01:28:02,503 --> 01:28:06,006 OCTOPI HAVE BRAINS IN EACH THEIR 1672 01:28:06,006 --> 01:28:06,507 ARMS. 1673 01:28:06,507 --> 01:28:07,374 THAT'S WHAT NIH IS LIKE. 1674 01:28:07,374 --> 01:28:12,580 THEY'RE DOING THEIR OWN THING 1675 01:28:12,580 --> 01:28:15,850 AND PART OF THE ISSUE IS TRYING 1676 01:28:15,850 --> 01:28:23,858 TO MAKE SURE THE DATA PRACTICES 1677 01:28:23,858 --> 01:28:27,862 ALIGN WITH THE TRIBAL ORDINANCES 1678 01:28:27,862 --> 01:28:35,703 AND LAWS. 1679 01:28:35,703 --> 01:28:41,208 WE HAD TO GET EVERYBODY ON THE 1680 01:28:41,208 --> 01:28:51,752 SAME PAGE FOR SAFETY AND THIS IS 1681 01:28:54,455 --> 01:28:56,123 TIMELY BECAUSE PRESIDENT BIDEN 1682 01:28:56,123 --> 01:28:58,259 AND THE WHITE HOUSE RECENTLY 1683 01:28:58,259 --> 01:29:02,329 ISSUED EXECUTIVE ORDER 14112 1684 01:29:02,329 --> 01:29:03,397 FEDERAL FUNDING TO BETTER 1685 01:29:03,397 --> 01:29:05,833 EMBRACE OUR TRUST 1686 01:29:05,833 --> 01:29:08,936 RESPONSIBILITIES FOR THE TRIBAL 1687 01:29:08,936 --> 01:29:09,737 SELF-DETERMINATION. 1688 01:29:09,737 --> 01:29:12,106 THEY SAY IN THERE DATA 1689 01:29:12,106 --> 01:29:12,673 SOVEREIGNTY IS PART OF THE 1690 01:29:12,673 --> 01:29:22,049 CONVERSATION. 1691 01:29:22,049 --> 01:29:25,953 I WANT TO ACKNOWLEDGE THE DATA 1692 01:29:25,953 --> 01:29:27,655 SOVEREIGNTY WORKING GROUP AND 23 1693 01:29:27,655 --> 01:29:30,024 MEMBERS WITH INSTITUTES 1694 01:29:30,024 --> 01:29:34,428 REPRESENTS ON THAT WORK GROUP. 1695 01:29:34,428 --> 01:29:39,033 PART OF CARVING OUT THE POLICY. 1696 01:29:39,033 --> 01:29:42,002 WE HAVE NINE LISTENING SESSIONS 1697 01:29:42,002 --> 01:29:48,475 ACROSS THE COUNTRY WITH TRIBES 1698 01:29:48,475 --> 01:29:50,811 AND GET INPUT ON WHERE WE NEED 1699 01:29:50,811 --> 01:29:53,948 TO GO WITH RESPECT TO INDIGENOUS 1700 01:29:53,948 --> 01:29:54,915 DATA SOVEREIGNTY. 1701 01:29:54,915 --> 01:29:56,750 AND TO MAKE SURE WE'RE ALL ON 1702 01:29:56,750 --> 01:29:58,452 THE SAME PAGE ABOUT WHAT WE'RE 1703 01:29:58,452 --> 01:29:59,687 TALKING ABOUT HERE. 1704 01:29:59,687 --> 01:30:01,555 WE'RE TALKING ABOUT THE RIGHT OF 1705 01:30:01,555 --> 01:30:05,526 TRIBAL NATIONS AND INDIGENOUS 1706 01:30:05,526 --> 01:30:08,195 COMMUNITIES TO EXERCISE 1707 01:30:08,195 --> 01:30:10,598 SOVEREIGN OWNERSHIP AND SHARING, 1708 01:30:10,598 --> 01:30:15,836 TRANSFER, RE-USE, DISPOSITION 1709 01:30:15,836 --> 01:30:18,839 AND DISPOSAL OF INFORMATION 1710 01:30:18,839 --> 01:30:20,841 ABOUT AND FROM INDIGENOUS 1711 01:30:20,841 --> 01:30:22,409 POPULATIONS WHERE DATA HAS THE 1712 01:30:22,409 --> 01:30:25,145 POTENTIAL TO AFFECT THE WELFARE 1713 01:30:25,145 --> 01:30:26,847 OF TRIBAL NATIONS AND INDIGENOUS 1714 01:30:26,847 --> 01:30:27,815 COMMUNITIES AND VILLAGES. 1715 01:30:27,815 --> 01:30:32,653 WE RECOGNIZE THE CARE PRINCIPLES 1716 01:30:32,653 --> 01:30:34,421 DEVELOPED FROM A GROUP AROUND 1717 01:30:34,421 --> 01:30:35,522 THE COLLECTIVE BENEFIT AUTHORITY 1718 01:30:35,522 --> 01:30:38,959 TO CONTROL RESPONSIBILITY AND 1719 01:30:38,959 --> 01:30:39,193 ETHICS. 1720 01:30:39,193 --> 01:30:41,261 AND NIH AND I WANT TO PUT THIS 1721 01:30:41,261 --> 01:30:42,696 OUT HERE WE'RE READY BEFORE WE 1722 01:30:42,696 --> 01:30:45,933 START THE PROCESS FOR A DATA 1723 01:30:45,933 --> 01:30:47,167 SHARING GUIDANCE LED BY 1724 01:30:47,167 --> 01:30:51,238 COLLEAGUES IN THE ROOM HERE THAT 1725 01:30:51,238 --> 01:30:52,840 ACTUALLY ARE ALREADY PUT INTO 1726 01:30:52,840 --> 01:30:54,308 PLACE NOT ONLY HONORING 1727 01:30:54,308 --> 01:30:57,911 RESPONSIBILITY BUT WE HONOR THE 1728 01:30:57,911 --> 01:30:59,680 TRIBAL SORT OF AND FEDERAL TRUST 1729 01:30:59,680 --> 01:31:01,248 RELATIONSHIP IN THE ABSENCE OF 1730 01:31:01,248 --> 01:31:03,384 ORDINANCES AND LAWS TRIBES MAY 1731 01:31:03,384 --> 01:31:03,617 HAVE. 1732 01:31:03,617 --> 01:31:05,819 WE DON'T PENALIZE TRIBES BECAUSE 1733 01:31:05,819 --> 01:31:07,688 THEY HAVEN'T BEEN ABLE TO 1734 01:31:07,688 --> 01:31:08,489 DEVELOP THEIR INFRASTRUCTURE TO 1735 01:31:08,489 --> 01:31:09,623 HAVE LAWS AND ORDINANCES. 1736 01:31:09,623 --> 01:31:11,859 WE WILL FOLLOW THE MANDATES OF 1737 01:31:11,859 --> 01:31:15,863 WHAT THAT COMMUNITY SAYS IS IN 1738 01:31:15,863 --> 01:31:19,566 THE BEST INTEREST. 1739 01:31:19,566 --> 01:31:20,968 A COUPLE THINGS THAT MAKE THIS 1740 01:31:20,968 --> 01:31:23,771 DIFFERENT I WANT TO CALL THIS 1741 01:31:23,771 --> 01:31:24,872 OUT A LITTLE BIT. 1742 01:31:24,872 --> 01:31:26,607 GENERALLY IN RESEARCH WE ARE 1743 01:31:26,607 --> 01:31:28,609 EXPECTED TO FOLLOW WHAT'S CALLED 1744 01:31:28,609 --> 01:31:34,682 THE COMMON RULE FOR TRIBES. 1745 01:31:34,682 --> 01:31:36,517 AND BASICALLY IT SAYS TRIBAL 1746 01:31:36,517 --> 01:31:39,053 RESEARCH LAWS AND ORDINANCES 1747 01:31:39,053 --> 01:31:40,587 TAKE PRECEDENT AND FEDERAL 1748 01:31:40,587 --> 01:31:44,158 AGENCIES MUST FOLLOW THESE LAWS 1749 01:31:44,158 --> 01:31:45,192 IF TRIBAL LAWS AND ORDINANCES 1750 01:31:45,192 --> 01:31:46,593 ARE MORE RESTRICTIVE THAN THE 1751 01:31:46,593 --> 01:31:47,361 COMMON RULE. 1752 01:31:47,361 --> 01:31:53,033 I CAN TELL YOU AFTER REVIEWING A 1753 01:31:53,033 --> 01:31:55,302 LOT OF TRIBAL LAWS AND 1754 01:31:55,302 --> 01:31:56,503 ORDINANCES WE ARE MORE 1755 01:31:56,503 --> 01:31:57,805 RESTRICTIVE. 1756 01:31:57,805 --> 01:32:02,276 WE HONOR THAT IN THE ABSENCE OF 1757 01:32:02,276 --> 01:32:03,310 TRIBAL LAWS WE HONOR THE 1758 01:32:03,310 --> 01:32:04,745 SOVEREIGNTY OF THE COMMUNITIES. 1759 01:32:04,745 --> 01:32:07,848 ONE THING WE DO BUTT UP AGAINST 1760 01:32:07,848 --> 01:32:10,784 AT THE NIH I'LL PUT OUT FOR 1761 01:32:10,784 --> 01:32:12,086 DISCUSSION OVER THE NEXT DAY AND 1762 01:32:12,086 --> 01:32:14,188 A HALF IS BIO SPECIMENS ARE NOT 1763 01:32:14,188 --> 01:32:15,522 CONSIDERED HUMAN SUBJECTS UNDER 1764 01:32:15,522 --> 01:32:17,291 THE COMMON RULE BUT WE KNOW MOST 1765 01:32:17,291 --> 01:32:20,527 TRIBAL LAWS AND ORDINANCES 1766 01:32:20,527 --> 01:32:22,796 EXTEND HUMAN SUBJECTS PROTECTION 1767 01:32:22,796 --> 01:32:27,267 TO DE-IDENTIFIED BIO SPECIMENS 1768 01:32:27,267 --> 01:32:31,672 THAT MEANS FEDERAL AGENCIES ARE 1769 01:32:31,672 --> 01:32:34,174 EXPECTED TO ACEDE TO TRIBAL 1770 01:32:34,174 --> 01:32:34,575 LAWS. 1771 01:32:34,575 --> 01:32:36,176 IF YOU KNOW TRIBES THAT DON'T 1772 01:32:36,176 --> 01:32:46,286 HAVE THE LAWS IN PLACE, FOR 1773 01:32:46,286 --> 01:32:46,954 COMMUNITY PROTECTIONS BASICALLY 1774 01:32:46,954 --> 01:32:56,497 THINK ABOUT PRIORITIZING THAT. 1775 01:32:56,497 --> 01:32:59,500 WHAT TIES TO BIO SPECIMENS THIS 1776 01:32:59,500 --> 01:33:01,301 WAS A HUGE THEME ACROSS THE 1777 01:33:01,301 --> 01:33:02,803 BOARD AND WITH OUR COMMUNITIES, 1778 01:33:02,803 --> 01:33:07,107 I CAN SUMMARIZE IT IN THREE 1779 01:33:07,107 --> 01:33:08,108 ELEMENTS SAMPLES LIVING IN 1780 01:33:08,108 --> 01:33:10,210 NON-LIVING ARE RELATIONSHIPS. 1781 01:33:10,210 --> 01:33:11,845 THIS WAS A HUGE THEME THAT CAME 1782 01:33:11,845 --> 01:33:13,647 OUT IN OUR COMMUNITIES. 1783 01:33:13,647 --> 01:33:17,518 THAT ALSO EXTENDED NOT JUST TO 1784 01:33:17,518 --> 01:33:20,587 HUMAN ELEMENTS BUT ALSO PLANT, 1785 01:33:20,587 --> 01:33:25,392 WATER, LAND PROTEINS, DNA, OTHER 1786 01:33:25,392 --> 01:33:27,361 BIOLOGICAL DERIVATIVES. 1787 01:33:27,361 --> 01:33:29,363 AS SCIENCE DATA ENCOMPASSES ALL 1788 01:33:29,363 --> 01:33:31,098 THOSE THINGS NOT ONLY HUMANS. 1789 01:33:31,098 --> 01:33:36,670 WE ALSO HAVE TO THINK ABOUT WHEN 1790 01:33:36,670 --> 01:33:41,875 PEOPLE COMMUNITIES HONOR NATIVE 1791 01:33:41,875 --> 01:33:43,844 PEOPLE PARTICIPATING IN STUDIES 1792 01:33:43,844 --> 01:33:47,347 ESPECIALLY IN THE CLINICAL 1793 01:33:47,347 --> 01:33:49,750 TRIALS BECAUSE WE UNDERSTAND 1794 01:33:49,750 --> 01:33:51,418 PEOPLE ARE OFFERING THEIR 1795 01:33:51,418 --> 01:33:55,322 INFORMATION OR SAMPLES AND IT'S 1796 01:33:55,322 --> 01:33:57,057 A SACRED OFFERING TO HELP AND 1797 01:33:57,057 --> 01:33:58,258 BENEFIT COMMUNITIES OF WELL 1798 01:33:58,258 --> 01:34:01,395 BEING AND HE IS A SUNDANCE 1799 01:34:01,395 --> 01:34:01,662 LEADER. 1800 01:34:01,662 --> 01:34:08,936 HE DREW THE PARALLEL TO AN 1801 01:34:08,936 --> 01:34:10,671 OFFERING THAT IS SACRED TO HELP 1802 01:34:10,671 --> 01:34:13,040 PEOPLE SO IT CAN LIVE SO WE NEED 1803 01:34:13,040 --> 01:34:16,510 TO BE MINDFUL AND THOUGHTFUL 1804 01:34:16,510 --> 01:34:17,678 ABOUT TRIBAL SORT OF BUT ALSO 1805 01:34:17,678 --> 01:34:19,213 HONORING PEOPLE'S DECISION 1806 01:34:19,213 --> 01:34:22,316 MAKING IN THAT PROCESS AS SACRED 1807 01:34:22,316 --> 01:34:22,583 OFFERING. 1808 01:34:22,583 --> 01:34:23,851 THAT POINT CAME UP. 1809 01:34:23,851 --> 01:34:27,154 THE OTHER IS SACRED KNOWLEDGE. 1810 01:34:27,154 --> 01:34:32,059 THE IMPORTANCE OF KNOWLEDGES AND 1811 01:34:32,059 --> 01:34:36,897 PROTOCOL THAT REQUIRE 1812 01:34:36,897 --> 01:34:37,264 RESPONSIBILITY. 1813 01:34:37,264 --> 01:34:38,298 IT'S NOT UP TO ONE INDIVIDUAL TO 1814 01:34:38,298 --> 01:34:40,801 SAY I CAN GIVE THE INFORMATION 1815 01:34:40,801 --> 01:34:42,336 WAY BUT SOME KNOWLEDGE IS HELD 1816 01:34:42,336 --> 01:34:43,136 SACRED AND BY THE COMMUNITY AND 1817 01:34:43,136 --> 01:34:46,506 NEED TO THINK ABOUT THAT IN 1818 01:34:46,506 --> 01:34:47,774 TERMS OF DATA SOVEREIGNTY. 1819 01:34:47,774 --> 01:34:50,177 THESE ELEMENTS CAME UP AROUND 1820 01:34:50,177 --> 01:34:51,311 CULTURAL FACTORS AND I'M SURE 1821 01:34:51,311 --> 01:34:52,079 WE'LL EXPLORE MORE IN THE NEXT 1822 01:34:52,079 --> 01:35:01,655 DAY AND A HALF. 1823 01:35:01,655 --> 01:35:05,425 AND WHEN I'M ASKED ABOUT DATA, 1824 01:35:05,425 --> 01:35:08,028 ALL DATA. 1825 01:35:08,028 --> 01:35:08,829 BIOLOGICALLY DATA AND SEQUENCE 1826 01:35:08,829 --> 01:35:11,565 TISSUE AND PRODUCTS AND 1827 01:35:11,565 --> 01:35:14,568 SENSITIVE DATA LIKE UMBILICAL 1828 01:35:14,568 --> 01:35:15,002 CORDS, PLACENTA. 1829 01:35:15,002 --> 01:35:16,103 THESE ARE OFTEN USED IN 1830 01:35:16,103 --> 01:35:22,309 RESEARCH. 1831 01:35:22,309 --> 01:35:24,378 CLINICAL DATA INCLUDING 1832 01:35:24,378 --> 01:35:26,680 INFORMATION ABOUT PEOPLE'S 1833 01:35:26,680 --> 01:35:29,049 HEALTH STATUS AND QUANTITATIVE 1834 01:35:29,049 --> 01:35:31,018 DATA AND CLINICAL TRIALS AND 1835 01:35:31,018 --> 01:35:33,520 QUALITATIVE DATA AND ANY 1836 01:35:33,520 --> 01:35:35,222 NON-NUMERICAL DATA AND CAN 1837 01:35:35,222 --> 01:35:36,323 INCLUDE STORIES AND SONGS SHARED 1838 01:35:36,323 --> 01:35:38,258 PART OF RESEARCH PROJECTS AND 1839 01:35:38,258 --> 01:35:39,026 THICK LIKE THAT. 1840 01:35:39,026 --> 01:35:42,062 DIFFERENT DATA MODALITIES 1841 01:35:42,062 --> 01:35:47,834 IMAGING, GENOMIC SURVEY AND 1842 01:35:47,834 --> 01:35:51,371 DIFFERENT AGGREGATION AND LARGE 1843 01:35:51,371 --> 01:35:53,140 DATA SETS BUT ANYTHING THAT FROM 1844 01:35:53,140 --> 01:35:59,846 WHICH WILL BE PRESERVED AND 1845 01:35:59,846 --> 01:36:02,582 SHARED AND ALL THE TRIBE LAWS 1846 01:36:02,582 --> 01:36:05,552 AND ETHICS TIED TO THAT AND THE 1847 01:36:05,552 --> 01:36:09,222 ISSUE OF METADATA AND OTHER 1848 01:36:09,222 --> 01:36:09,556 DOCUMENTATION. 1849 01:36:09,556 --> 01:36:11,758 ESPECIALLY AROUND COMING OUT OF 1850 01:36:11,758 --> 01:36:12,626 BEHAVIORAL HEALTH RESEARCH WHERE 1851 01:36:12,626 --> 01:36:15,862 THERE MIGHT BE STUDY PROTOCOLS 1852 01:36:15,862 --> 01:36:17,531 AND DATA COLLECTION INSTRUMENTS 1853 01:36:17,531 --> 01:36:19,366 TIED TO A PARTICULAR COMMUNITY 1854 01:36:19,366 --> 01:36:21,168 BUT MAY THEY MOT WANT TO HEAR 1855 01:36:21,168 --> 01:36:21,368 THAT. 1856 01:36:21,368 --> 01:36:26,006 -- NOT WANT TO HEAR THAT AND 1857 01:36:26,006 --> 01:36:27,975 THINGS THAT ARE TALKED ABOUT AND 1858 01:36:27,975 --> 01:36:32,012 FINAL THEMES THAT HAVE BEEN 1859 01:36:32,012 --> 01:36:32,245 COMING. 1860 01:36:32,245 --> 01:36:35,582 BOTTOM LINE FROM MANAGEMENT TO 1861 01:36:35,582 --> 01:36:36,616 DISPOSAL AND COLLECTION TO 1862 01:36:36,616 --> 01:36:39,853 DISPOSAL MUST BE TRIBALLY 1863 01:36:39,853 --> 01:36:42,055 APPROVED PRIOR TO DATA 1864 01:36:42,055 --> 01:36:42,356 COLLECTION. 1865 01:36:42,356 --> 01:36:45,292 THAT'S THE BOTTOM LINE COMING 1866 01:36:45,292 --> 01:36:46,560 OUT. 1867 01:36:46,560 --> 01:36:48,795 A CAVEAT THERE, I DOESN'T MEAN 1868 01:36:48,795 --> 01:36:53,467 IN THE GRANT PROCESS WE EXPECT 1869 01:36:53,467 --> 01:36:55,836 PEOPLE HAVE TRIBALLY SUPPORTIVE 1870 01:36:55,836 --> 01:36:57,037 LETTER SAYING WE'RE IN SUPPORT 1871 01:36:57,037 --> 01:36:58,405 OF MOVING FORWARD WITH THE 1872 01:36:58,405 --> 01:37:00,040 RESEARCH IF IT GETS FUNDED. 1873 01:37:00,040 --> 01:37:04,378 WE WILL CONTINUE TO WORK OUT THE 1874 01:37:04,378 --> 01:37:10,283 DETAILS AT THAT TIME. 1875 01:37:10,283 --> 01:37:12,052 WE DIDN'T WANT IT PUT THE BURDEN 1876 01:37:12,052 --> 01:37:13,820 ON THE TRIBE TO VET THAT STUFF. 1877 01:37:13,820 --> 01:37:15,122 IT'S COSTLY AND A LOT OF WORK 1878 01:37:15,122 --> 01:37:17,257 AND THEY DON'T GET FUNDED. 1879 01:37:17,257 --> 01:37:18,258 FEW PROJECTS GET FUNDED IN THE 1880 01:37:18,258 --> 01:37:19,092 FIRST ROUND. 1881 01:37:19,092 --> 01:37:23,030 WE WANT TO SAY IS THE INITIAL 1882 01:37:23,030 --> 01:37:26,199 DATA SHARING PLAN, INITIALLY 1883 01:37:26,199 --> 01:37:30,003 SUPPORT THE PROJECT AND MOVE 1884 01:37:30,003 --> 01:37:31,671 FORWARD TO THE NEXT PHASE AND 1885 01:37:31,671 --> 01:37:33,206 THE EXPECTATION IS BEFORE WE 1886 01:37:33,206 --> 01:37:35,709 COLLECT THE DATA YOU HAVE 1887 01:37:35,709 --> 01:37:36,209 EVERYTHING IN PLACE. 1888 01:37:36,209 --> 01:37:37,844 SO THE COLLECTIVE CONCEPT 1889 01:37:37,844 --> 01:37:38,912 PROCESS AND THE INDIVIDUAL 1890 01:37:38,912 --> 01:37:40,380 CONSENT PROCESS SHOULD BE 1891 01:37:40,380 --> 01:37:40,647 CLARIFIED. 1892 01:37:40,647 --> 01:37:43,850 SO INDIVIDUAL COLLECTIVE AND 1893 01:37:43,850 --> 01:37:47,888 SHARED BENEFITS SHOULD ALWAYS BE 1894 01:37:47,888 --> 01:37:48,288 DEFINED. 1895 01:37:48,288 --> 01:37:50,857 WE EXPECT FREE AND INFORMED 1896 01:37:50,857 --> 01:37:54,094 PRIOR CONSENT FOR INDIVIDUALS IN 1897 01:37:54,094 --> 01:37:56,596 PLAIN, CLEAR LANGUAGE TO ENSURE 1898 01:37:56,596 --> 01:37:57,064 MUTUAL UNDERSTANDING. 1899 01:37:57,064 --> 01:37:59,132 SOMETIMES WE HAVE TO HAVE MOUs 1900 01:37:59,132 --> 01:38:02,402 IN PLACE EVEN IT START THE 1901 01:38:02,402 --> 01:38:04,404 PROJECT MEMORANDUMS OF 1902 01:38:04,404 --> 01:38:06,106 UNDERSTANDING OR 1903 01:38:06,106 --> 01:38:08,742 INTERGOVERNMENTAL AGREEMENTS. 1904 01:38:08,742 --> 01:38:11,812 AND TRIBES SAID WE HAVE THE 1905 01:38:11,812 --> 01:38:12,779 RIGHT TO DESIGNATE IRB OF RECORD 1906 01:38:12,779 --> 01:38:14,514 OR REVIEW BODY. 1907 01:38:14,514 --> 01:38:16,450 A TRIBE MIGHT SAY WE DON'T HAVE 1908 01:38:16,450 --> 01:38:18,085 A RESEARCH REVIEW COMMITTEE SO 1909 01:38:18,085 --> 01:38:20,821 WE'RE GOING TO DESIGNATE THE 1910 01:38:20,821 --> 01:38:22,689 UNIVERSITY OR DESIGNATE ANOTHER 1911 01:38:22,689 --> 01:38:23,857 TRIBAL AUTHORITY TO BE REVIEW 1912 01:38:23,857 --> 01:38:24,057 BODY. 1913 01:38:24,057 --> 01:38:26,059 WE NEED TO HONOR THAT AND TRIBES 1914 01:38:26,059 --> 01:38:28,361 MAY EVEN SAY WE STILL EXPECT 1915 01:38:28,361 --> 01:38:30,697 WE'RE GOING TO CREATE A SMALL 1916 01:38:30,697 --> 01:38:32,632 REVIEW COMMITTEE THAT WILL 1917 01:38:32,632 --> 01:38:35,902 REVIEW THINGS TOO NOTHING COULD 1918 01:38:35,902 --> 01:38:37,204 BE DOWN WITHOUT THE SUPPORT OF 1919 01:38:37,204 --> 01:38:39,206 THE INTERNAL REVIEW COMMITTEE WE 1920 01:38:39,206 --> 01:38:39,573 DEVELOPED. 1921 01:38:39,573 --> 01:38:40,207 WE'RE SAYING YES WE SHOULD HONOR 1922 01:38:40,207 --> 01:38:41,541 THAT. 1923 01:38:41,541 --> 01:38:42,642 TRIBES HAVE THE RIGHT TO 1924 01:38:42,642 --> 01:38:44,778 DETERMINE IF THEY WANT SINGLE OR 1925 01:38:44,778 --> 01:38:46,813 MULTIPLE IRBs IN THE APPROVAL 1926 01:38:46,813 --> 01:38:50,817 PROCESSES I TALKED ABOUT AND AN 1927 01:38:50,817 --> 01:38:52,786 INDIVIDUAL RIGHT OF DATA 1928 01:38:52,786 --> 01:38:53,053 DISPOSAL. 1929 01:38:53,053 --> 01:38:54,221 THIS IS IMPORTANT. 1930 01:38:54,221 --> 01:38:57,724 IF NATIVE PEOPLE HAVE CONSENTED 1931 01:38:57,724 --> 01:38:59,159 TO HAVING THE DATA DESTROYED AT 1932 01:38:59,159 --> 01:39:01,528 THE END OF THE STUDY, WHATEVER 1933 01:39:01,528 --> 01:39:02,329 THAT IS BECAUSE THAT'S WHERE 1934 01:39:02,329 --> 01:39:04,097 THEY HAVE CONSENTED TO AND WHAT 1935 01:39:04,097 --> 01:39:08,502 THEY WANT, IN THIS CASE TRIBAL 1936 01:39:08,502 --> 01:39:10,203 SOVEREIGNTY CAN'T TRUMP THAT AND 1937 01:39:10,203 --> 01:39:12,272 SAY WE'LL HOLD ON TO THAT AND 1938 01:39:12,272 --> 01:39:14,708 USE IT WHERE WE WANT TO. 1939 01:39:14,708 --> 01:39:15,842 TRIBES HAVE TO ABIDE BY 1940 01:39:15,842 --> 01:39:17,110 INDIVIDUAL CONSENT. 1941 01:39:17,110 --> 01:39:19,112 THIS IS THE REASON WHY THE 1942 01:39:19,112 --> 01:39:21,481 CONSENT PROCESS UP FRONT IS 1943 01:39:21,481 --> 01:39:21,748 CRITICAL. 1944 01:39:21,748 --> 01:39:26,219 AND THEN LEGACY PLANS NEED TO BE 1945 01:39:26,219 --> 01:39:27,354 TRIBALLY APPROVED. 1946 01:39:27,354 --> 01:39:29,089 ISSUES AROUND DISPOSITION, 1947 01:39:29,089 --> 01:39:31,858 TRANSFER AND DISPOSAL PLANS FOR 1948 01:39:31,858 --> 01:39:34,561 DATA ASSOCIATED WITH DECEASED 1949 01:39:34,561 --> 01:39:35,629 INDIVIDUALS NEEDS TO BE PART OF 1950 01:39:35,629 --> 01:39:37,831 THE DATA COLLECTION ESPECIALLY 1951 01:39:37,831 --> 01:39:38,598 FOR LONGITUDINAL STUDIES. 1952 01:39:38,598 --> 01:39:42,302 IF YOU'RE GOING TO HOLD DATA 1953 01:39:42,302 --> 01:39:45,839 FROM GENETIC RESEARCH FOR 1954 01:39:45,839 --> 01:39:47,374 EXAMPLE AND BIOLOGICAL RESEARCH 1955 01:39:47,374 --> 01:39:48,542 YOU CAN GO BACK AND ANSWER 1956 01:39:48,542 --> 01:39:51,178 QUESTIONS YOU CAN'T ANSWER NOW. 1957 01:39:51,178 --> 01:39:52,746 AND PEOPLE WANT TO HOLD ON TO 1958 01:39:52,746 --> 01:39:53,547 DATA FOR THAT PERIOD. 1959 01:39:53,547 --> 01:39:56,349 WE DON'T WANT YOU TO JUST HOLD 1960 01:39:56,349 --> 01:39:58,985 ON TO THAT FOREVER WE WANT 1961 01:39:58,985 --> 01:40:00,086 RE-CONSENT PROCESS TO ENSURE 1962 01:40:00,086 --> 01:40:05,625 WE'RE KEEPING AN EYE ON THINGS 1963 01:40:05,625 --> 01:40:16,169 AND WE'RE AND TRIBES SHOULD MAKE 1964 01:40:18,805 --> 01:40:20,373 THE DECISION IN THE CASE OF 1965 01:40:20,373 --> 01:40:21,675 SOMEONE DECEASED. 1966 01:40:21,675 --> 01:40:29,249 IT'S LIKE PEELING BACK LAYERS OF 1967 01:40:29,249 --> 01:40:29,516 AN ONION. 1968 01:40:29,516 --> 01:40:32,886 WE HAVE A LEVEL OF DETAILS WHAT 1969 01:40:32,886 --> 01:40:36,089 WE'LL BE NARROWING DOWN TO. 1970 01:40:36,089 --> 01:40:37,958 TRIBES HAVE A RIGHT TO 1971 01:40:37,958 --> 01:40:39,292 PREFERENCES HOW BIOLOGICAL 1972 01:40:39,292 --> 01:40:41,261 SAMPLES WILL BE COLLECTED, 1973 01:40:41,261 --> 01:40:42,829 STEWARDED, STORED AND WHERE 1974 01:40:42,829 --> 01:40:44,698 STORED AND HOW THEY'LL BE 1975 01:40:44,698 --> 01:40:45,465 DISPOSED OF. 1976 01:40:45,465 --> 01:40:47,801 THAT'S COME UP AS AN INTERSTATE 1977 01:40:47,801 --> 01:40:48,868 THEME. 1978 01:40:48,868 --> 01:40:51,538 TRIBES HAVE THE RIGHT TO 1979 01:40:51,538 --> 01:40:52,772 TRADITIONAL GUARDIANSHIP AND 1980 01:40:52,772 --> 01:40:55,842 CULTURAL LANGUAGE AND THE WORK 1981 01:40:55,842 --> 01:40:59,279 HAS BEEN INSTRUMENTAL AS WELL AS 1982 01:40:59,279 --> 01:41:09,623 BIO SPECIMENS AND DNA, RNA AND 1983 01:41:09,623 --> 01:41:12,692 ANY GENETICS DERIVED. 1984 01:41:12,692 --> 01:41:14,394 AND TRIBAL CONSENT OR RECONSENT 1985 01:41:14,394 --> 01:41:21,468 NEEDS TO BE ASCERTAINED IF THEY 1986 01:41:21,468 --> 01:41:22,102 IMPACT THE TRIEP. 1987 01:41:22,102 --> 01:41:27,540 FOR EXAMPLE, YOU MAY HAVE DONE A 1988 01:41:27,540 --> 01:41:30,076 GIANT SURVEY RESEARCH STUDY 1989 01:41:30,076 --> 01:41:31,544 DIDN'T INITIALLY YOU HAD TRIBAL 1990 01:41:31,544 --> 01:41:33,546 INFORMATION BUT PROMISED NOT TO 1991 01:41:33,546 --> 01:41:35,815 REPORT BY TRIBE BUT NOW YOU'VE 1992 01:41:35,815 --> 01:41:37,751 GONE IN THE DATA AND ARE LIKE 1993 01:41:37,751 --> 01:41:40,287 OH, BOY, THERE'S A BUNCH OF 1994 01:41:40,287 --> 01:41:42,088 NAVAJO IN MY SAMPLE AND WOULD 1995 01:41:42,088 --> 01:41:45,258 LIKE TO BE ABLE TO LOOK AT THIS, 1996 01:41:45,258 --> 01:41:47,294 GUESS WHAT, YOU DON'T GET TO 1997 01:41:47,294 --> 01:41:49,062 UNLESS YOU TALK TO NAVAJO NATION 1998 01:41:49,062 --> 01:41:50,597 AND GET APPROVAL. 1999 01:41:50,597 --> 01:41:52,666 SECONDLY USE AND RECONSENT NEEDS 2000 01:41:52,666 --> 01:41:56,736 TO BE TAKEN CARE OF FOR ANYTHING 2001 01:41:56,736 --> 01:42:01,908 THAT COULD BE DERIVED FROM A 2002 01:42:01,908 --> 01:42:03,843 TRIBE AND TRIBES HAVE ASKED TO 2003 01:42:03,843 --> 01:42:06,112 US CONSIDER STOPPING THAT AGAIN 2004 01:42:06,112 --> 01:42:08,381 PUTTING IN RE-CONSENT PROCESS UP 2005 01:42:08,381 --> 01:42:11,951 FRONT AT THE BEGINNING OF THE 2006 01:42:11,951 --> 01:42:19,326 CONSENT PERIOD. 2007 01:42:19,326 --> 01:42:23,496 IDEAS AND POLICIES SHOULD HONOR 2008 01:42:23,496 --> 01:42:25,532 TRIBAL SOVEREIGNTY AND 2009 01:42:25,532 --> 01:42:27,600 GOVERNANCE AND IF DATA OR 2010 01:42:27,600 --> 01:42:29,302 ATTRIBUTIONS IF THE TRIBE MEMBER 2011 01:42:29,302 --> 01:42:31,705 MADE AND OWNERSHIP OF AUTHORITY 2012 01:42:31,705 --> 01:42:33,840 OVER DATA RESTS WITH THE TRIBE 2013 01:42:33,840 --> 01:42:36,810 AND MUST CLARIFY WITH THE TRIBE 2014 01:42:36,810 --> 01:42:38,545 WHO CO-OWNS THE DATA AND HOW THE 2015 01:42:38,545 --> 01:42:46,386 DATA WILL BE STEWARDED AND ON 2016 01:42:46,386 --> 01:42:47,787 LOAN AND PROTECTIONS THAT NEED 2017 01:42:47,787 --> 01:42:48,688 TO BE IN PLACE. 2018 01:42:48,688 --> 01:42:49,923 NOTICE I'M SAYING TRIBES HERE. 2019 01:42:49,923 --> 01:42:55,862 WE HAVE OTHER RELATIVES HERE 2020 01:42:55,862 --> 01:42:59,566 FROM HAWAI'I AND WE'VE INVITED 2021 01:42:59,566 --> 01:43:00,800 THEM AND THEY SAID THEY WANT TO 2022 01:43:00,800 --> 01:43:01,968 THINK ABOUT THIS AS WELL TO MAKE 2023 01:43:01,968 --> 01:43:03,837 SURE WE'RE DOING THIS IN A GOOD 2024 01:43:03,837 --> 01:43:07,841 WAY FOR OUR COMMUNITIES AND 2025 01:43:07,841 --> 01:43:10,143 WE'LL LOOK FORWARD TO HEARING 2026 01:43:10,143 --> 01:43:10,844 FROM THEM HOW THEY'RE ORGANIZING 2027 01:43:10,844 --> 01:43:12,612 AND THINKING ABOUT THAT. 2028 01:43:12,612 --> 01:43:16,116 WE CAN LEARN FROM THAT AS WELL. 2029 01:43:16,116 --> 01:43:18,685 URBAN INDIAN ISSUES IS AN ISSUE. 2030 01:43:18,685 --> 01:43:19,686 WE'LL TALK ABOUT THAT. 2031 01:43:19,686 --> 01:43:21,988 IF THE STUDY'S NOT MAKING WHAT 2032 01:43:21,988 --> 01:43:24,591 TO DO IF YOU HAVE A SAMPLE. 2033 01:43:24,591 --> 01:43:25,892 BASICALLY WHERE WE'RE LANDING ON 2034 01:43:25,892 --> 01:43:27,394 THIS RIGHT NOW IS IF THE STUDY 2035 01:43:27,394 --> 01:43:32,365 IS NOT MAKING INFERENCES TO A 2036 01:43:32,365 --> 01:43:34,234 TRIBAL COMMUNITY IF IT'S NOT 2037 01:43:34,234 --> 01:43:35,835 COLLECTED ON TRIBAL LAND AND I 2038 01:43:35,835 --> 01:43:38,772 KNOW IT'S ALL TRIBAL LAND. 2039 01:43:38,772 --> 01:43:43,610 WE KNOW. 2040 01:43:43,610 --> 01:43:46,913 THE LEGAL IMPLICATIONS OF THAT 2041 01:43:46,913 --> 01:43:48,681 IF THE RESPONDENT LIVE ON THE 2042 01:43:48,681 --> 01:43:50,917 TRIBAL LAND AND DATA IS NOT 2043 01:43:50,917 --> 01:43:55,455 COLLECTED AT AN URBAN FACILITY, 2044 01:43:55,455 --> 01:43:59,559 THAT'S A LOT OF IFs IT'S LIKE A 2045 01:43:59,559 --> 01:44:01,494 BAD SAS STATEMENT. 2046 01:44:01,494 --> 01:44:02,962 THEN WE CAN PROCEED WITH TRIBAL 2047 01:44:02,962 --> 01:44:04,297 APPROVAL NO INFERENCES AND 2048 01:44:04,297 --> 01:44:05,732 NOTHING THAT CAN BE MADE TO 2049 01:44:05,732 --> 01:44:07,834 ATTRIBUTIONS TO A TRIBAL 2050 01:44:07,834 --> 01:44:08,101 COMMUNITY. 2051 01:44:08,101 --> 01:44:09,569 THIS IS IMPORTANT BECAUSE WE DO 2052 01:44:09,569 --> 01:44:12,539 NATIONAL STUDIES AND DO STUDIES 2053 01:44:12,539 --> 01:44:14,541 WHERE WE WANT TO MAKE GENERAL 2054 01:44:14,541 --> 01:44:15,475 IDEAS WHAT'S THE STATE OF NATIVE 2055 01:44:15,475 --> 01:44:19,412 HEALTH AND THINGS LIKE THAT. 2056 01:44:19,412 --> 01:44:22,048 YOU DON'T MAKE INFERENCES AND 2057 01:44:22,048 --> 01:44:23,416 HURT TRIBAL COMMUNITIES. 2058 01:44:23,416 --> 01:44:24,984 BUT HERE'S ONE OF THE 2059 01:44:24,984 --> 01:44:26,219 COMPOUNDING ISSUES IS A NUMBER 2060 01:44:26,219 --> 01:44:28,822 OF OUR URBAN AREAS AND THINK OF 2061 01:44:28,822 --> 01:44:33,860 OKLAHOMA RECENTLY WITH THE 2062 01:44:33,860 --> 01:44:36,095 McGURK DECISION TRIBAL LANDS SIT 2063 01:44:36,095 --> 01:44:38,865 LITERALLY IN URBAN SETTINGS. 2064 01:44:38,865 --> 01:44:41,234 TULSA IS NOW THREE TRIBES AND IN 2065 01:44:41,234 --> 01:44:45,371 THE PAST YOU DO A STUDY IN TULSA 2066 01:44:45,371 --> 01:44:46,940 WOULD HAVE BEEN AN URBAN SITE. 2067 01:44:46,940 --> 01:44:47,841 NOT ANYMORE. 2068 01:44:47,841 --> 01:44:49,342 IN THAT CASE I WOULD SAY YOU 2069 01:44:49,342 --> 01:44:51,544 HAVE TO GO TO THREE TRIBES. 2070 01:44:51,544 --> 01:44:55,081 SO IF IT'S AN URBAN SAMPLE 2071 01:44:55,081 --> 01:44:57,984 YOU'RE NOT IN THE TRIBAL LANDS 2072 01:44:57,984 --> 01:44:59,219 ARE CLOSE LIKE PHOENIX, 2073 01:44:59,219 --> 01:45:00,987 ALBUQUERQUE IS WHERE IT GETS 2074 01:45:00,987 --> 01:45:01,788 TRICKY. 2075 01:45:01,788 --> 01:45:03,556 SOME PEOPLE WILL GO TO THOSE 2076 01:45:03,556 --> 01:45:05,825 AREAS TO PARTICIPATE IN THE 2077 01:45:05,825 --> 01:45:08,561 STUDY BUT LIVE LITERALLY HALF 2078 01:45:08,561 --> 01:45:12,232 HOUR AWAY AND ON TRIBAL LANDS. 2079 01:45:12,232 --> 01:45:13,867 WE EXPECT WE SHOULD MEET THE 2080 01:45:13,867 --> 01:45:15,835 SAME CRITERIA AS ABOVE AND IF 2081 01:45:15,835 --> 01:45:18,071 YOU'RE NOT PLANNING ON DOING ANY 2082 01:45:18,071 --> 01:45:21,207 KIND OF TRIBAL ATTRIBUTIONS WORK 2083 01:45:21,207 --> 01:45:24,744 WITH THE TRIBES LOCALLY AND 2084 01:45:24,744 --> 01:45:26,045 REGIONALLY AND BE TRANSPARENT IF 2085 01:45:26,045 --> 01:45:28,381 YOU ARE GOING TO DO AN MOU 2086 01:45:28,381 --> 01:45:30,083 SAYING WE'RE NOT ATTRIBUTING TO 2087 01:45:30,083 --> 01:45:32,352 THEIR TRIBE WE MAKE THAT PROMISE 2088 01:45:32,352 --> 01:45:33,853 TO YOU THEN THAT MIGHT BE A WAY 2089 01:45:33,853 --> 01:45:35,855 TO GO BUT WE'RE LOOKING FORWARD 2090 01:45:35,855 --> 01:45:40,393 TOO -- TO WHAT YOU HAVE TO SAY 2091 01:45:40,393 --> 01:45:41,427 ABOUT THAT. 2092 01:45:41,427 --> 01:45:42,962 THIS IS NOT WRITTEN IN STONE. 2093 01:45:42,962 --> 01:45:48,034 AND WE CAN CREATE A POLICY HERE 2094 01:45:48,034 --> 01:45:51,838 AND IT'S IMPORTANT WE DO THAT 2095 01:45:51,838 --> 01:45:54,641 BUT IT'S ONLY GOING TO BE AS 2096 01:45:54,641 --> 01:45:57,577 GOOD AS THE INFRASTRUCTURE 2097 01:45:57,577 --> 01:45:58,811 TRIBES SIT AND BE PART OF THE 2098 01:45:58,811 --> 01:45:59,045 PROCESS. 2099 01:45:59,045 --> 01:46:00,680 WE WANT TO MAKE SURE WE'RE 2100 01:46:00,680 --> 01:46:06,553 MAKING A COMMITMENT TO DATA 2101 01:46:06,553 --> 01:46:11,724 GOVERNANCE AND TRIBES DO THIS 2102 01:46:11,724 --> 01:46:13,526 FOR THEMSELVES HAVE THEIR OWN 2103 01:46:13,526 --> 01:46:14,561 RESEARCHERS AND INFRASTRUCTURE 2104 01:46:14,561 --> 01:46:19,866 AND NIH HAS BEEN MOVING IN THAT 2105 01:46:19,866 --> 01:46:22,969 DIRECTION AND WE WANT TO GIVE 2106 01:46:22,969 --> 01:46:25,171 RESOURCE TO TRIBES AND HAVE THE 2107 01:46:25,171 --> 01:46:26,272 OWNERSHIP AND COMMUNITY. 2108 01:46:26,272 --> 01:46:27,840 AND SO DATA GOVERNANCE IS 2109 01:46:27,840 --> 01:46:29,809 CRITICAL FOR US TO THINK ABOUT 2110 01:46:29,809 --> 01:46:30,243 AT NIH. 2111 01:46:30,243 --> 01:46:31,844 THIS IS MORE FORWARD THINKING 2112 01:46:31,844 --> 01:46:36,349 BEYOND THE CONVERSATIONS TODAY 2113 01:46:36,349 --> 01:46:38,918 AND HOW DO WE BUILD GOVERNANCE 2114 01:46:38,918 --> 01:46:40,119 STRUCTURES, ESTABLISHING AND 2115 01:46:40,119 --> 01:46:43,423 HENNHEN 2116 01:46:43,423 --> 01:46:46,993 ING -- BUILDING REPOSITORIES 2117 01:46:46,993 --> 01:46:47,827 AND SO FORTH. 2118 01:46:47,827 --> 01:46:52,565 DATA SOVEREIGNTY PROTOCOLS AND 2119 01:46:52,565 --> 01:46:54,133 THE OTHER IS CAPACITY HOW DO WE 2120 01:46:54,133 --> 01:46:56,502 HELP SUPPORT COMMUNITIES IN 2121 01:46:56,502 --> 01:46:59,839 BUILDING THAT CAPACITY AND 2122 01:46:59,839 --> 01:47:02,642 CULTURAL PRESERVATION AND 2123 01:47:02,642 --> 01:47:03,576 HONORING INTEGRATING SYSTEMS 2124 01:47:03,576 --> 01:47:06,713 ONLY AS APPROPRIATE. 2125 01:47:06,713 --> 01:47:08,881 THE TRIBES SHOULD DETERMINE 2126 01:47:08,881 --> 01:47:12,118 WHAT'S APPROPRIATE AND LOOK AT 2127 01:47:12,118 --> 01:47:13,019 TRADITIONAL RIGHTS AND WAYS OF 2128 01:47:13,019 --> 01:47:13,286 KNOWING. 2129 01:47:13,286 --> 01:47:13,853 THESE ARE THINGS I'VE BEEN 2130 01:47:13,853 --> 01:47:18,324 THINKING ABOUT. 2131 01:47:18,324 --> 01:47:19,792 2132 01:47:20,994 --> 01:47:22,295 THAT'S A QUICK OVERVIEW TO THIS 2133 01:47:22,295 --> 01:47:24,831 MOMENT TO GET US READY FOR THE 2134 01:47:24,831 --> 01:47:25,965 CONVERSATION TODAY. 2135 01:47:25,965 --> 01:47:27,133 ANY QUESTIONS BEFORE I WE MOVE 2136 01:47:27,133 --> 01:47:37,276 FORWARD? 2137 01:47:41,014 --> 01:47:43,016 I KNOW THERE'S A LOT OF 2138 01:47:43,016 --> 01:47:43,316 INFORMATION. 2139 01:47:43,316 --> 01:47:43,883 I'VE BEEN WELL CAFFEINATED 2140 01:47:43,883 --> 01:47:53,993 TODAY. 2141 01:47:55,895 --> 01:47:59,999 >> I'LL TELL YOU TOMORROW. 2142 01:47:59,999 --> 01:48:02,301 >> ONE WAS AT THE INDIGENOUS 2143 01:48:02,301 --> 01:48:03,836 DATA SOVEREIGNTY CONFERENCE IN 2144 01:48:03,836 --> 01:48:07,373 ARIZONA. 2145 01:48:07,373 --> 01:48:08,174 HAWAI'I WAS ANOTHER ONE. 2146 01:48:08,174 --> 01:48:17,483 OKLAHOMA WAS ANOTHER ONE. 2147 01:48:17,483 --> 01:48:20,153 WE DID ONE WITH PROGRAM 2148 01:48:20,153 --> 01:48:20,486 INVESTIGATORS. 2149 01:48:20,486 --> 01:48:24,757 WE DID ONE IN OKLAHOMA. 2150 01:48:24,757 --> 01:48:27,060 THE REGIONAL TRIBAL MEETING. 2151 01:48:27,060 --> 01:48:30,930 WE DID THE EYE RENA PROGRAM 2152 01:48:30,930 --> 01:48:33,599 P.I.s AND HAD ONE AT THE JOHNS 2153 01:48:33,599 --> 01:48:34,367 HOPKINS CENTER FOR INDIGENOUS 2154 01:48:34,367 --> 01:48:39,639 HEALTH WITH INVESTIGATORS THERE. 2155 01:48:39,639 --> 01:48:43,543 WE HAD ONE WITH THE MEETING. 2156 01:48:43,543 --> 01:48:50,783 WE HAD ONE WITH THE GROUP ONLINE 2157 01:48:50,783 --> 01:49:00,960 AS WELL AS 2158 01:49:00,960 --> 01:49:03,629 >> NATIVE INVESTIGATORS HAVE 2159 01:49:03,629 --> 01:49:05,965 UNIQUE NEEDS AND NATIVE, 2160 01:49:05,965 --> 01:49:06,833 NON-NATIVE AND NATIVE 2161 01:49:06,833 --> 01:49:07,834 INVESTIGATORS IN THEIR OWN 2162 01:49:07,834 --> 01:49:08,935 COMMUNITIES HAVE UNIQUE NEEDS 2163 01:49:08,935 --> 01:49:12,772 THAT MAY COME UP AND WE WANTED 2164 01:49:12,772 --> 01:49:16,342 TO HEAR WHAT THEY WERE THINKING. 2165 01:49:16,342 --> 01:49:17,410 AND WE'RE NOT DONE. 2166 01:49:17,410 --> 01:49:20,947 WE'RE HAVING LISTENING SESSIONS 2167 01:49:20,947 --> 01:49:23,649 AND WILL HAVE TWO TRIBAL 2168 01:49:23,649 --> 01:49:25,551 CONSULTATIONS AND ONE WILL BE 2169 01:49:25,551 --> 01:49:27,086 JUST TO GATHER SIMILAR FEEDBACK 2170 01:49:27,086 --> 01:49:29,522 FROM TRIBES AND THE OTHER ONE'S 2171 01:49:29,522 --> 01:49:31,858 GOING TO BE TO VET THE POLICY 2172 01:49:31,858 --> 01:49:33,259 ONCE WE WRITE IT UP AND GET OUT 2173 01:49:33,259 --> 01:49:33,559 THERE. 2174 01:49:33,559 --> 01:49:35,228 WE'LL HAVE PLENTY OF OPPORTUNITY 2175 01:49:35,228 --> 01:49:36,062 FOR PEOPLE TO RESPOND AND GIVE 2176 01:49:36,062 --> 01:49:41,634 PUBLIC COMMENT. 2177 01:49:41,634 --> 01:49:44,137 >> A QUICK QUESTION AS WELL. 2178 01:49:44,137 --> 01:49:46,005 >> WE'LL PROBABLY TALK ABOUT 2179 01:49:46,005 --> 01:49:48,107 THIS LATER IN OUR DISCUSSIONS 2180 01:49:48,107 --> 01:49:50,777 BUT ONE OF THE I THINK 2181 01:49:50,777 --> 01:49:52,478 CHALLENGING THINGS IS WHILE 2182 01:49:52,478 --> 01:49:53,646 WE'RE WORKING ON MORE FORMAL 2183 01:49:53,646 --> 01:49:55,181 POLICY OF RESEARCH THAT WOULD GO 2184 01:49:55,181 --> 01:49:55,982 FORWARD THERE'S A LOT OF 2185 01:49:55,982 --> 01:49:57,450 EXISTING DATA THAT EXISTS WITHIN 2186 01:49:57,450 --> 01:49:59,852 THE PUBLIC DOMAIN AND THEN 2187 01:49:59,852 --> 01:50:01,888 THERE'S ALSO -- WELL, WE HAVE TO 2188 01:50:01,888 --> 01:50:06,092 FIGURE OUT WHAT HAPPENS THERE 2189 01:50:06,092 --> 01:50:09,328 AND THE OTHER THING IS THERE'S 2190 01:50:09,328 --> 01:50:11,731 CURRENT POLICY AT THE NIH LEVEL 2191 01:50:11,731 --> 01:50:12,465 SPECIFIC GUIDELINES AND POLICY 2192 01:50:12,465 --> 01:50:15,201 PROJECTS WITH HAVE TO ABIDE BY 2193 01:50:15,201 --> 01:50:19,138 TO DEPOSIT THIS INFORMATION TO 2194 01:50:19,138 --> 01:50:20,139 PUBLIC DATABASES AND 2195 01:50:20,139 --> 01:50:21,841 REPOSITORIES AND ONCE IT GOES 2196 01:50:21,841 --> 01:50:24,110 THERE IT'S UNDER THEIR PURVIEW. 2197 01:50:24,110 --> 01:50:26,779 IS THERE ANY DISCUSSION -- 2198 01:50:26,779 --> 01:50:28,214 >> WE'RE HAVING A LOT OF 2199 01:50:28,214 --> 01:50:30,116 INTERNAL DISCUSSION AND WORKING 2200 01:50:30,116 --> 01:50:32,151 WITH THE OFFICE OF SCIENCE 2201 01:50:32,151 --> 01:50:33,619 POLICY OFFICE AND WORKING 2202 01:50:33,619 --> 01:50:35,855 CLOSELY WITH THE OFFICE OF 2203 01:50:35,855 --> 01:50:37,123 GENERAL COUNCIL I'M SURE. 2204 01:50:37,123 --> 01:50:42,094 BUT WE'VE BEEN WORKING CLOSELY 2205 01:50:42,094 --> 01:50:43,462 WITH VARIOUS INSTITUTES AROUND 2206 01:50:43,462 --> 01:50:45,698 THIS AND SOME GENOMICS POLICY IN 2207 01:50:45,698 --> 01:50:45,998 PARTICULAR. 2208 01:50:45,998 --> 01:50:47,667 WE HAVE LARGE DATA SETS. 2209 01:50:47,667 --> 01:50:49,802 WE'RE DOING A REVIEW RIGHT NOW 2210 01:50:49,802 --> 01:50:53,940 OF ALL OF OUR REPOSITORIES. 2211 01:50:53,940 --> 01:50:58,411 WE'RE LOOKING INTO THAT WHERE 2212 01:50:58,411 --> 01:50:59,846 ARE OUR AMERICAN INDIAN AND 2213 01:50:59,846 --> 01:51:00,947 NATIVE HAWAIIAN SAMPLES AND 2214 01:51:00,947 --> 01:51:03,382 GETTING A GOOD IDEA WHERE 2215 01:51:03,382 --> 01:51:03,749 EVERYTHING SITS. 2216 01:51:03,749 --> 01:51:05,117 WE'RE WORKING CLOSELY WITH THE 2217 01:51:05,117 --> 01:51:11,858 ISSUES OF RESTRICTED ACCESS WITH 2218 01:51:11,858 --> 01:51:14,293 MAKING SURE DATA RETURN AS WELL. 2219 01:51:14,293 --> 01:51:17,730 WE'VE BEEN WORKING CLOSELY WITH 2220 01:51:17,730 --> 01:51:18,097 FOLKS. 2221 01:51:18,097 --> 01:51:19,599 ONE THING I CAN ANNOUNCE THAT'S 2222 01:51:19,599 --> 01:51:20,499 NOT OFFICIAL YET BECAUSE WE HAVE 2223 01:51:20,499 --> 01:51:22,268 TO GO THROUGH A PROCESS 2224 01:51:22,268 --> 01:51:24,103 INTERNALLY BUT SAFE IT SAY WE 2225 01:51:24,103 --> 01:51:30,076 HAVE THE COMMITMENT FROM OUR 2226 01:51:30,076 --> 01:51:34,547 INTRAMURAL IRB TO DEVELOP AN 2227 01:51:34,547 --> 01:51:36,115 AMERICAN INDIAN ALASKAN NATIVE, 2228 01:51:36,115 --> 01:51:39,118 HAWAIIAN IRB AT THE NIH. 2229 01:51:39,118 --> 01:51:49,428 THAT WILL BE NEW. 2230 01:52:08,814 --> 01:52:11,717 >> THERE'S AN ACF FUNDED GRANT 2231 01:52:11,717 --> 01:52:13,653 AND WHAT ARE PROTECTIONS 2232 01:52:13,653 --> 01:52:16,622 PROCESSES OF OTHER AGENCIES? 2233 01:52:16,622 --> 01:52:19,859 >> WE HAVE A WEEKLY MEETING WITH 2234 01:52:19,859 --> 01:52:23,496 THE OPERATING DIVISIONS OF HHS. 2235 01:52:23,496 --> 01:52:27,266 WE'RE ALL IN COMMUNICATION AND 2236 01:52:27,266 --> 01:52:29,268 WE'RE TALKING ABOUT HOW TO DO 2237 01:52:29,268 --> 01:52:29,468 THIS. 2238 01:52:29,468 --> 01:52:31,070 NSF IS ONE OF THE FIRST TO GET 2239 01:52:31,070 --> 01:52:33,773 AHEAD OF US ON DEVELOPING THEIR 2240 01:52:33,773 --> 01:52:34,006 POLICY. 2241 01:52:34,006 --> 01:52:35,708 I THINK OURS IS GOING TO BE THE 2242 01:52:35,708 --> 01:52:38,644 MOST RIGOROUS AND DETAILED. 2243 01:52:38,644 --> 01:52:42,114 THAT'S FAIR TO SAY RIGHT NOW. 2244 01:52:42,114 --> 01:52:42,982 AND IT'S A LITTLE DIFFERENT 2245 01:52:42,982 --> 01:52:45,051 BECAUSE WE DO RESEARCH. 2246 01:52:45,051 --> 01:52:46,285 OUR PRODUCTS ARE KNOWLEDGE. 2247 01:52:46,285 --> 01:52:48,788 OTHER FOLKS ARE WORKING IN 2248 01:52:48,788 --> 01:52:50,589 PROGRAMS AND SERVICES AND SO 2249 01:52:50,589 --> 01:52:51,991 THEY'RE DEALING WITH HIPAA 2250 01:52:51,991 --> 01:52:53,826 REGULATIONS AND OTHER ISSUES 2251 01:52:53,826 --> 01:52:55,061 RELATED TO CLINICAL DATA THAT WE 2252 01:52:55,061 --> 01:52:57,330 DON'T HAVE THE SAME KIND OF 2253 01:52:57,330 --> 01:52:58,197 THING. 2254 01:52:58,197 --> 01:53:03,602 THERE'S GOING TO BE SOME 2255 01:53:03,602 --> 01:53:03,903 DIFFERENCES. 2256 01:53:03,903 --> 01:53:07,840 BUT THERE IS TRIBAL EPICENTER 2257 01:53:07,840 --> 01:53:09,542 DATA SHARING CONSULTATION PIECE 2258 01:53:09,542 --> 01:53:12,111 POLICY PIECE THAT'S OUT RIGHT 2259 01:53:12,111 --> 01:53:17,583 NOW FOR PUBLIC COMMENT. 2260 01:53:17,583 --> 01:53:21,087 EACH HAVE SLIGHTLY DIFFERENT 2261 01:53:21,087 --> 01:53:24,090 MANDATES IN TERMS OF WHAT'S THAT 2262 01:53:24,090 --> 01:53:24,657 LOOK LIKE. 2263 01:53:24,657 --> 01:53:27,793 THE PEC ISSUES BECAUSE IT HAS TO 2264 01:53:27,793 --> 01:53:29,428 DO WITH INDIAN HEALTH SERVICE 2265 01:53:29,428 --> 01:53:31,230 DATA AND HIPAA AND OTHER ISSUES 2266 01:53:31,230 --> 01:53:33,299 WE DON'T RUN INTO THE SAME KIND 2267 01:53:33,299 --> 01:53:39,672 OF ISSUES AT THE NIH. 2268 01:53:39,672 --> 01:53:41,640 >> I WANT TO ACKNOWLEDGE ALL THE 2269 01:53:41,640 --> 01:53:45,311 WORK YOU'VE BEEN DOING, KARINA, 2270 01:53:45,311 --> 01:53:52,785 IT TAKES MY BREATH AWAY. 2271 01:53:52,785 --> 01:53:55,488 THERE'S MORE WORK TO BE DONE AND 2272 01:53:55,488 --> 01:53:56,389 DIFFICULT CONVERSATIONS. 2273 01:53:56,389 --> 01:54:01,627 I'M WONDERING IF YOU HAVE A TIME 2274 01:54:01,627 --> 01:54:05,564 LINE BECAUSE I FEEL LIKE WE 2275 01:54:05,564 --> 01:54:10,336 NEEDED THIS MANY YESTERDAYS AGO. 2276 01:54:10,336 --> 01:54:12,038 THE LONGER WE TAKE TO CREATE A 2277 01:54:12,038 --> 01:54:17,143 POLICY AND HOLDING SPACE TO 2278 01:54:17,143 --> 01:54:19,612 CREATE THESE POLICIES AND 2279 01:54:19,612 --> 01:54:23,849 EVERYONE WANTS TO MAKE THE NEXT 2280 01:54:23,849 --> 01:54:26,552 GRANT CYCLE AND LA, LA, LA, LA. 2281 01:54:26,552 --> 01:54:31,857 DO WE HAVE, THE COLLECTIVE WE 2282 01:54:31,857 --> 01:54:41,033 BECAUSE THINGS ARE HAPPENING AND 2283 01:54:41,033 --> 01:54:42,101 BECAUSE DATA IS ALREADY 2284 01:54:42,101 --> 01:54:43,235 COLLECTED ON US SO TIME LINE 2285 01:54:43,235 --> 01:54:45,004 WOULD BE NICE. 2286 01:54:45,004 --> 01:54:51,343 >> WITH THAT WE HAVE TIME LINE 2287 01:54:51,343 --> 01:54:54,747 FOR POLICY AND GUIDANCE PAUSE 2288 01:54:54,747 --> 01:54:56,649 THERE'S A LOT TO DO. 2289 01:54:56,649 --> 01:55:00,820 OUR GOAL IS BY OCTOBER TO HAVE 2290 01:55:00,820 --> 01:55:02,555 OUR FIRST TRIBAL CONSULTATION 2291 01:55:02,555 --> 01:55:04,523 AND SO CERTAINLY WE HAVE A DRAFT 2292 01:55:04,523 --> 01:55:10,563 POLICY BY THE FIRST OF THE YEAR. 2293 01:55:10,563 --> 01:55:14,100 WE'RE TRYING TO GET THIS IN 2294 01:55:14,100 --> 01:55:15,034 BEFORE POTENTIAL CHANGE IN 2295 01:55:15,034 --> 01:55:16,335 ADMINISTRATION AND WE'RE MOVING 2296 01:55:16,335 --> 01:55:18,370 FORWARD AND HOPE TO HAVE 2297 01:55:18,370 --> 01:55:19,839 EVERYTHING IN PLACE BY SPRING OF 2298 01:55:19,839 --> 01:55:27,780 NEXT YEAR. 2299 01:55:27,780 --> 01:55:28,414 >> I'M CONCERNED ABOUT THIS AS 2300 01:55:28,414 --> 01:55:31,650 WELL. 2301 01:55:31,650 --> 01:55:34,320 IT SEEMS LIKE THE FOLKS FROM 2302 01:55:34,320 --> 01:55:35,855 THAT PROJECT IS TRYING TO RACE 2303 01:55:35,855 --> 01:55:37,823 BEFORE ANY OF THE POLICY CHANGES 2304 01:55:37,823 --> 01:55:41,093 COME IN AND TRYING TO HURRY UP 2305 01:55:41,093 --> 01:55:43,829 AND GET THEIR DATA COLLECTIVE 2306 01:55:43,829 --> 01:55:45,197 AND SEQUENCING STARTED BEFORE 2307 01:55:45,197 --> 01:55:46,465 THESE THINGS HAPPEN BECAUSE IT'S 2308 01:55:46,465 --> 01:55:51,504 BEEN A GRAY AREA. 2309 01:55:51,504 --> 01:55:52,805 WE'RE TRYING TO HOLD THEM OFF 2310 01:55:52,805 --> 01:55:54,206 BEST WE CAN THE LAST YEAR AND A 2311 01:55:54,206 --> 01:55:55,241 HALF OR SO. 2312 01:55:55,241 --> 01:55:58,310 THERE'S DEFINITELY PEOPLE AWARE 2313 01:55:58,310 --> 01:55:59,845 THESE CHANGES MAY BE COMING AND 2314 01:55:59,845 --> 01:56:01,647 THEY'RE TRYING TO RUSH THEIR 2315 01:56:01,647 --> 01:56:02,481 PROJECTS ALONG. 2316 01:56:02,481 --> 01:56:06,652 THE OTHER THING IS I WAS IN 2317 01:56:06,652 --> 01:56:09,555 BISMARCK LAST WEEK FOR THE 2318 01:56:09,555 --> 01:56:10,990 TRIBAL COLLEGES LEADERSHIP 2319 01:56:10,990 --> 01:56:11,290 SUMMIT. 2320 01:56:11,290 --> 01:56:15,961 THEY HAD A DINNER MEETING WITH 2321 01:56:15,961 --> 01:56:18,097 THE GREAT PLAINS TRIBAL 2322 01:56:18,097 --> 01:56:19,365 EPIDEMIOLOGY EPIDEMIOLOGY CENTER 2323 01:56:19,365 --> 01:56:20,699 AND DIRECTORS AND THEY'RE MAD 2324 01:56:20,699 --> 01:56:23,569 BECAUSE THE STATES IN THAT AREA 2325 01:56:23,569 --> 01:56:25,538 ARE CREATING LAWS TO NOT 2326 01:56:25,538 --> 01:56:26,972 RECOGNIZE TRIBES AS PUBLIC 2327 01:56:26,972 --> 01:56:28,707 HEALTH ENTITIES. 2328 01:56:28,707 --> 01:56:30,109 THAT'S ANOTHER BIG CHANGE 2329 01:56:30,109 --> 01:56:32,077 HAPPENING VERY QUICKLY SINCE 2330 01:56:32,077 --> 01:56:35,481 COVID TRIBES HAVE STOOD UP THEIR 2331 01:56:35,481 --> 01:56:37,283 OWN EPIDEMIOLOGY CENTERS AND THE 2332 01:56:37,283 --> 01:56:39,084 FEDS HAVE RECOGNIZED THEM AS 2333 01:56:39,084 --> 01:56:40,786 PUBLIC HEALTH ENTITIES AND THE 2334 01:56:40,786 --> 01:56:43,689 STATES DO NOT WANT TO AND THEY 2335 01:56:43,689 --> 01:56:46,058 WANT TO CREATE LAWS TO PREVENT 2336 01:56:46,058 --> 01:56:47,826 SHARING DATA WITH TRIBES. 2337 01:56:47,826 --> 01:56:58,204 >> THANK YOU FOR THAT. 2338 01:56:58,470 --> 01:57:03,042 >> IT'S GOING TO MAKE MONTHS TO 2339 01:57:03,042 --> 01:57:04,310 GETS THROUGH THIS AND WORKING 2340 01:57:04,310 --> 01:57:06,078 BACKWARDS TO SAY MAKE SURE WE 2341 01:57:06,078 --> 01:57:07,379 HAVE TRIBAL LAWS. 2342 01:57:07,379 --> 01:57:09,515 FIRST AND FOREMOST AND MAKING 2343 01:57:09,515 --> 01:57:11,250 SURE OUR INSTITUTES ARE ALIGNED 2344 01:57:11,250 --> 01:57:14,119 WITH LAWS AND ORDINANCES BOTTOM 2345 01:57:14,119 --> 01:57:16,188 LINE AND DOING THAT ON A CASE BY 2346 01:57:16,188 --> 01:57:18,123 CASE BASIS. 2347 01:57:18,123 --> 01:57:23,395 WE'RE IMPLEMENTING THAT. 2348 01:57:23,395 --> 01:57:25,297 WE'RE WORKING TRANSPARENTLY AND 2349 01:57:25,297 --> 01:57:26,832 WORKING WITH TRIBES WHERE PEOPLE 2350 01:57:26,832 --> 01:57:28,167 HAVE NOT BEEN ALIGNED AND WE'RE 2351 01:57:28,167 --> 01:57:29,969 GOING TO THE TRIBES AND SAYING 2352 01:57:29,969 --> 01:57:31,837 WE'RE NOT ALIGNED. 2353 01:57:31,837 --> 01:57:33,005 WE NEED TO CORRECT THIS AND 2354 01:57:33,005 --> 01:57:35,374 LET'S MOVE FORWARD. 2355 01:57:35,374 --> 01:57:39,545 HOW DO WE DO THAT. 2356 01:57:39,545 --> 01:57:40,379 THERE ARE THINGS TO BRING 2357 01:57:40,379 --> 01:57:41,947 BACKWARDS TO LOOK AT HOW TO MOVE 2358 01:57:41,947 --> 01:57:43,215 FORWARD AND SAYING THIS IS HOW 2359 01:57:43,215 --> 01:57:44,583 YOU CAN GET FUNDED AND THE ONLY 2360 01:57:44,583 --> 01:57:46,785 WAY YOU'RE GOING TO GET FUNDED 2361 01:57:46,785 --> 01:57:48,821 AND THERE'S GOING TO TO BE 2362 01:57:48,821 --> 01:57:50,155 REPERCUSSIONS IF YOU DON'T 2363 01:57:50,155 --> 01:57:50,522 FOLLOW THROUGH. 2364 01:57:50,522 --> 01:57:54,260 ONE THING WE WERE TALKING ABOUT 2365 01:57:54,260 --> 01:57:57,096 FUNDING NOT HAPPENING IS FUNDING 2366 01:57:57,096 --> 01:57:58,631 WITHDRAWN AFTER TWO YEARS PRIOR 2367 01:57:58,631 --> 01:58:00,065 TO DATA COLLECTION DON'T HAVE 2368 01:58:00,065 --> 01:58:00,799 SOMETHING IN PLACE WITH THAT 2369 01:58:00,799 --> 01:58:01,800 TRIBE. 2370 01:58:01,800 --> 01:58:04,136 WE'RE LOOKING AT ALL KINDS OF 2371 01:58:04,136 --> 01:58:07,072 DIFFERENT THINGS BUT BASICALLY 2372 01:58:07,072 --> 01:58:08,607 WHERE WE HAVE THE GREATEST POWER 2373 01:58:08,607 --> 01:58:10,109 IS SAYING THESE ARE THE RULES TO 2374 01:58:10,109 --> 01:58:13,512 ABIDE BY TO GET FUNDED. 2375 01:58:13,512 --> 01:58:15,114 SO IT'S GOING TO TAKE TIME. 2376 01:58:15,114 --> 01:58:17,182 THAT'S WHY A LOT OF IT IS GOING 2377 01:58:17,182 --> 01:58:18,450 TO BE SUPPLEMENTAL GUIDANCE. 2378 01:58:18,450 --> 01:58:20,219 THE GENERAL POLICY ISN'T GOING 2379 01:58:20,219 --> 01:58:25,024 TO BE SUPER PRESCRIPTIVE BUT BIG 2380 01:58:25,024 --> 01:58:27,026 ENOUGH FOR THE BIG PICTURE AND 2381 01:58:27,026 --> 01:58:27,559 CREATE GUIDES FROM DATA 2382 01:58:27,559 --> 01:58:35,301 COLLECTION THROUGH DISPOSAL. 2383 01:58:35,301 --> 01:58:37,436 WAS THERE A QUESTION OVER HERE? 2384 01:58:37,436 --> 01:58:39,605 >> SO THANK YOU SO MUCH FOR ALL 2385 01:58:39,605 --> 01:58:43,075 OF YOUR WORK AND I ALSO WANT TO 2386 01:58:43,075 --> 01:58:44,476 THANK YOU TOO FOR THE LAST 2387 01:58:44,476 --> 01:58:47,346 PIECES YOU REALLY HIGHLIGHTED AS 2388 01:58:47,346 --> 01:58:50,649 THE DIFFERENCE FOR NATIVE 2389 01:58:50,649 --> 01:58:51,517 SCHOLARS. 2390 01:58:51,517 --> 01:58:54,553 BECAUSE LATERAL VIOLENCE IS SUCH 2391 01:58:54,553 --> 01:58:56,522 A REALITY WITHIN THE 2392 01:58:56,522 --> 01:58:56,889 COMMUNITIES. 2393 01:58:56,889 --> 01:58:59,058 WE'VE HAD MANY OF OUR NATIVE 2394 01:58:59,058 --> 01:59:01,460 RESEARCHERS ARE STARTING TO GET 2395 01:59:01,460 --> 01:59:02,661 BURNED THROUGH THAT PROCESS. 2396 01:59:02,661 --> 01:59:06,131 AND HAVING OUR OWN TRIBAL 2397 01:59:06,131 --> 01:59:09,368 MEMBERS COME AFTER US AND IN 2398 01:59:09,368 --> 01:59:10,536 DIFFERENT WAYS IN OUR 2399 01:59:10,536 --> 01:59:11,804 COMMUNITIES AND THEY'RE NOT ONLY 2400 01:59:11,804 --> 01:59:16,408 QUITE DYSFUNCTIONAL, THEY'RE 2401 01:59:16,408 --> 01:59:18,544 QUITE DAMAGING TO THE CAREERS OF 2402 01:59:18,544 --> 01:59:19,845 NATIVE SCHOLARS AND THOSE SORTS 2403 01:59:19,845 --> 01:59:22,681 OF THINGS. 2404 01:59:22,681 --> 01:59:24,149 I DO HOPE THERE ARE SOME PLANS 2405 01:59:24,149 --> 01:59:27,886 IN ESSENCE FOR THOSE FOLKS WHO 2406 01:59:27,886 --> 01:59:30,823 ARE ENDANGERED AND NOT ONLY IN 2407 01:59:30,823 --> 01:59:31,457 THEIR INSTITUTIONS BUT 2408 01:59:31,457 --> 01:59:33,559 FREQUENTLY WITHIN THEIR OWN 2409 01:59:33,559 --> 01:59:35,527 COMMUNITIES BECAUSE WHEN YOU 2410 01:59:35,527 --> 01:59:37,730 SUCCESS IN ANY KIND OF WAY 2411 01:59:37,730 --> 01:59:38,964 WITHIN OUR COMMUNITIES YOU ARE 2412 01:59:38,964 --> 01:59:41,400 SUBJECT TO A LOT OF SCRUTINY AND 2413 01:59:41,400 --> 01:59:44,236 ALSO SUBJECT TO A LOT OF 2414 01:59:44,236 --> 01:59:49,675 NEGATIVE ACTIONS THAT CAN IMPACT 2415 01:59:49,675 --> 01:59:54,780 YOUR FAMILY THAT'S DIFFICULT FOR 2416 01:59:54,780 --> 01:59:55,714 US. 2417 01:59:55,714 --> 01:59:59,785 MANY HAVE BEEN THREATENED TO BE 2418 01:59:59,785 --> 02:00:01,253 SUED FOR SPEAKING ABOUT THINGS 2419 02:00:01,253 --> 02:00:03,622 THAT HAPPENED WITHIN THE TRIBES 2420 02:00:03,622 --> 02:00:07,292 THAT WILL DYSFUNCTIONAL BEA 2421 02:00:07,292 --> 02:00:10,596 HAIRS AND I WOULD SAY -- 2422 02:00:10,596 --> 02:00:12,498 BEHAVIORS AND I WOULD SAY MANY 2423 02:00:12,498 --> 02:00:18,137 TRIBAL LEADERSHIPS ARE VERY 2424 02:00:18,137 --> 02:00:18,370 CORRUPT. 2425 02:00:18,370 --> 02:00:23,842 WE HAD ONE FAMILY DEALING DRUGS 2426 02:00:23,842 --> 02:00:27,446 FROM THEIR HOME AND WE HELPED 2427 02:00:27,446 --> 02:00:29,148 CREATE THE DIFFERENT MECHANISMS 2428 02:00:29,148 --> 02:00:30,749 AND PROCESSES AND POLICIES BUT 2429 02:00:30,749 --> 02:00:33,318 NOW IT'S GETTING TO THE POINT 2430 02:00:33,318 --> 02:00:35,587 WHERE I'M LIKE WHAT ARE WE 2431 02:00:35,587 --> 02:00:35,788 DOING? 2432 02:00:35,788 --> 02:00:38,190 IT'S A DIFFICULT THING WHEN 2433 02:00:38,190 --> 02:00:40,259 YOU'RE SEEING THOSE SAME TOOLS 2434 02:00:40,259 --> 02:00:41,160 USED AGAINST PEOPLE WHO IT'S 2435 02:00:41,160 --> 02:00:43,629 MEANT TO BE PROTECTING IN A WAY. 2436 02:00:43,629 --> 02:00:46,565 SO I KNOW IT'S A BIG TOPIC BUT 2437 02:00:46,565 --> 02:00:49,568 IT IS SOMETHING I'M GRATEFUL 2438 02:00:49,568 --> 02:00:51,036 YOU'RE THINKING ABOUT AND I 2439 02:00:51,036 --> 02:00:52,171 APPRECIATE THE ABILITY WE'LL 2440 02:00:52,171 --> 02:00:53,405 HAVE TO DISCUSS THAT MORE. 2441 02:00:53,405 --> 02:00:53,739 IT'S HELPFUL. 2442 02:00:53,739 --> 02:00:55,541 THANK YOU. 2443 02:00:55,541 --> 02:00:57,342 >> THAT'S A GOOD EXAMPLE OF SOME 2444 02:00:57,342 --> 02:01:00,112 OF THE COMPLEXITIES OF BEING A 2445 02:01:00,112 --> 02:01:02,714 NATIVE RESEARCHER IN YOUR OWN 2446 02:01:02,714 --> 02:01:03,615 COMMUNITY SOMETIMES IN THE LOCAL 2447 02:01:03,615 --> 02:01:04,950 POLITICS AND ISSUES THAT ARE 2448 02:01:04,950 --> 02:01:05,517 THERE AS WELL. 2449 02:01:05,517 --> 02:01:09,388 SO THAT HAS COME UP IN A NUMBER 2450 02:01:09,388 --> 02:01:10,956 OF SITUATIONS. 2451 02:01:10,956 --> 02:01:13,158 WE WANT TO BE COGNIZANT OF THAT 2452 02:01:13,158 --> 02:01:15,394 AND SUPPORTIVE OF OUR UP AND 2453 02:01:15,394 --> 02:01:16,695 COMING NATIVE SCIENTISTS MAKING 2454 02:01:16,695 --> 02:01:18,130 THEIR WAY AND MOVE FORWARD IN A 2455 02:01:18,130 --> 02:01:22,267 HEALTHY WAY. 2456 02:01:22,267 --> 02:01:25,304 IT'S COMPLICATED WHEN WE SAY WE 2457 02:01:25,304 --> 02:01:26,171 HONOR TRIBAL SOVEREIGNTY AND 2458 02:01:26,171 --> 02:01:29,374 WORK WITH GOVERNMENTS PEOPLE MAY 2459 02:01:29,374 --> 02:01:31,076 NOT BE SUPPORTIVE OF. 2460 02:01:31,076 --> 02:01:31,944 THERE'S COMPLEXITY. 2461 02:01:31,944 --> 02:01:39,084 WHEN WE TALK ABOUT TRADITIONAL 2462 02:01:39,084 --> 02:01:40,385 GUARDIANSHIP, MAYBE YOU HAVE TO 2463 02:01:40,385 --> 02:01:42,120 WORK WITH TRIBAL LEADERS AND 2464 02:01:42,120 --> 02:01:43,422 WITH THE CULTURAL KNOWLEDGE HERE 2465 02:01:43,422 --> 02:01:45,591 AND NOT THERE. 2466 02:01:45,591 --> 02:01:47,826 SO THERE'S COMPLEXITY HERE. 2467 02:01:47,826 --> 02:01:50,229 WE DON'T WANT THE FEDERAL 2468 02:01:50,229 --> 02:01:51,763 GOVERNMENT'S HAND DOWN THERE 2469 02:01:51,763 --> 02:01:53,799 EITHER SO WHAT WE WANT TO DO IS 2470 02:01:53,799 --> 02:01:56,435 MUTUALLY HAVE A PLACE TO SAY WE 2471 02:01:56,435 --> 02:01:57,135 RECOGNIZE THESE THINGS AND HOW 2472 02:01:57,135 --> 02:02:01,206 DO WE MOVE FORWARD IN A HEALTHY 2473 02:02:01,206 --> 02:02:01,673 WAY. 2474 02:02:01,673 --> 02:02:02,474 THE BOTTOM LINE IS OUR PEOPLE 2475 02:02:02,474 --> 02:02:03,876 ARE SUFFERING AND WE WANT TO DO 2476 02:02:03,876 --> 02:02:05,744 SOMETHING ABOUT THAT TO BE ABLE 2477 02:02:05,744 --> 02:02:07,412 TO HELP PEOPLE BE HEALTHY AND 2478 02:02:07,412 --> 02:02:10,082 WELL AND HOW DO WE ENSURE OUR 2479 02:02:10,082 --> 02:02:11,850 PROCESS IS HEALTHY AND WELL IN 2480 02:02:11,850 --> 02:02:14,419 DOING THAT. 2481 02:02:14,419 --> 02:02:16,154 I THINK IT WILL BE -- WE MAY 2482 02:02:16,154 --> 02:02:17,856 HAVE MORE QUESTIONS THAN ANSWERS 2483 02:02:17,856 --> 02:02:22,327 BUT THAT'S IMPORTANT TO DO TOO. 2484 02:02:22,327 --> 02:02:22,594 MICHELLE. 2485 02:02:22,594 --> 02:02:29,234 >> I WAS GOING TO ASK OR OFFER 2486 02:02:29,234 --> 02:02:31,403 FOR REFLECTION OR CONSIDERATION 2487 02:02:31,403 --> 02:02:34,873 IN DEVELOPING THE POLICY THAT'S 2488 02:02:34,873 --> 02:02:36,408 IMPORTANT AND A MAJOR STEP 2489 02:02:36,408 --> 02:02:38,443 FORWARD BUT PRESERVING SPACE FOR 2490 02:02:38,443 --> 02:02:42,047 NUANCE AND IT NOT BECOME RIGID, 2491 02:02:42,047 --> 02:02:47,452 FIXED, PRESCRIPTIVE AND BECAUSE 2492 02:02:47,452 --> 02:02:49,855 THE COMPLEXITY AND THERE'S LOTS 2493 02:02:49,855 --> 02:02:50,522 OF DIFFERENCE BETWEEN 2494 02:02:50,522 --> 02:02:52,925 COMMUNITIES AND SETTINGS AND 2495 02:02:52,925 --> 02:02:55,360 CONTEXT. 2496 02:02:55,360 --> 02:02:59,097 ANYWAY, BEING MINDFUL OF AGAIN 2497 02:02:59,097 --> 02:03:02,301 BUILDING IN TO THIS POLICY SPACE 2498 02:03:02,301 --> 02:03:06,672 FOR NUANCE AND CONSIDERATION OF 2499 02:03:06,672 --> 02:03:08,707 DIFFERENCES, I GUESS YOU'D SAY. 2500 02:03:08,707 --> 02:03:10,008 >> YEAH. 2501 02:03:10,008 --> 02:03:11,577 WE DIDN'T WANT FOR EXAMPLE WITH 2502 02:03:11,577 --> 02:03:13,145 THE URBAN SITUATION WE DIDN'T 2503 02:03:13,145 --> 02:03:15,847 WANT TO DISCOURAGE PEOPLE FROM 2504 02:03:15,847 --> 02:03:19,851 COLLECTING URBAN DATA FROM 2505 02:03:19,851 --> 02:03:22,120 PEOPLE IN URBAN AREAS AND THAT'S 2506 02:03:22,120 --> 02:03:23,388 WHERE SOME POTENTIAL 2507 02:03:23,388 --> 02:03:24,022 CONVERSATIONS COULD HEAD. 2508 02:03:24,022 --> 02:03:25,524 LIKE I JUST WANT TO COLLECT DATA 2509 02:03:25,524 --> 02:03:26,992 OR ASK THE QUESTION. 2510 02:03:26,992 --> 02:03:29,227 I WANT TO ASK IF THEY'RE INDIAN. 2511 02:03:29,227 --> 02:03:34,199 THEY'RE LIKE OKAY. 2512 02:03:34,199 --> 02:03:35,434 THESE ARE THE THINGS WE'RE 2513 02:03:35,434 --> 02:03:40,772 HAVING TO KEEP AN EYE ON. 2514 02:03:40,772 --> 02:03:42,908 >> ALSO THINKING EVOLVES OVER 2515 02:03:42,908 --> 02:03:44,710 TIME. 2516 02:03:44,710 --> 02:03:48,513 THIS IS PERHAPS SOMEWHAT OF A 2517 02:03:48,513 --> 02:03:52,017 LIVING DOCUMENT. 2518 02:03:52,017 --> 02:03:55,120 >> THANK YOU. 2519 02:03:55,120 --> 02:03:57,155 >> I KNOW THERE'S BEEN ACTION 2520 02:03:57,155 --> 02:03:58,890 TAKEN BY SOME DIFFERENT 2521 02:03:58,890 --> 02:03:59,858 INSTITUTIONS AS PART OF THE NIH 2522 02:03:59,858 --> 02:04:03,695 TO BEGIN BUILDING OUT POLICIES 2523 02:04:03,695 --> 02:04:06,164 AND NATIONAL INSTITUTE ON AGING 2524 02:04:06,164 --> 02:04:08,166 STARTED SOMETHING. 2525 02:04:08,166 --> 02:04:09,468 HOW DO YOU SEE THIS POLICY 2526 02:04:09,468 --> 02:04:11,670 PLAYING WITH OTHER DOCUMENTS 2527 02:04:11,670 --> 02:04:12,838 THAT HAVE ALREADY BEEN STARTED? 2528 02:04:12,838 --> 02:04:13,472 >> OURS IS THE BIG ONE. 2529 02:04:13,472 --> 02:04:22,114 >> OKAY. 2530 02:04:22,114 --> 02:04:23,415 WE'RE GOING TO WORK WITH I.C.s 2531 02:04:23,415 --> 02:04:25,183 TO SEE HOW THEY'RE THINKING 2532 02:04:25,183 --> 02:04:27,019 ABOUT AND APPLYING IT AND HOW IT 2533 02:04:27,019 --> 02:04:28,520 ALIGNS OR DOESN'T ALIGN WITH THE 2534 02:04:28,520 --> 02:04:29,755 CURRENT VISION AND WORKING ONE 2535 02:04:29,755 --> 02:04:32,658 THEM TO MAKE SURE WE ALL ALIGN. 2536 02:04:32,658 --> 02:04:37,229 THIS IS FOR ALL OF THE NIH. 2537 02:04:37,229 --> 02:04:41,133 >> THERE'S CERTAIN SEGMENTS OF 2538 02:04:41,133 --> 02:04:42,968 OTHER POLICIES FROM OTHER I.C.s 2539 02:04:42,968 --> 02:04:44,569 THAT MAYBE DON'T EXIST UNDER 2540 02:04:44,569 --> 02:04:46,104 THIS BIG ONE. 2541 02:04:46,104 --> 02:04:47,873 WILL THOSE BE ADD ONES WITHIN 2542 02:04:47,873 --> 02:04:48,940 THE CONTEXT? 2543 02:04:48,940 --> 02:04:51,777 >> IT'S GOING TO HAVE TO ALIGN 2544 02:04:51,777 --> 02:04:54,046 WITH THE FINAL POLICY WRIT 2545 02:04:54,046 --> 02:04:57,249 LARGE. 2546 02:04:57,249 --> 02:04:59,851 SO WHATEVER THE POLICY BECOMES 2547 02:04:59,851 --> 02:05:01,353 OUR EXPECTATIONS IS MAKING SURE 2548 02:05:01,353 --> 02:05:03,655 THE POLICIES ARE ALIGNED WITH 2549 02:05:03,655 --> 02:05:04,122 THAT. 2550 02:05:04,122 --> 02:05:07,092 THIS WILL BE VETTED THROUGH OGC 2551 02:05:07,092 --> 02:05:08,160 TIED TO HHS. 2552 02:05:08,160 --> 02:05:09,594 THIS GOES UP THE CHAIN SO WHY IT 2553 02:05:09,594 --> 02:05:11,063 TAKES LONGER. 2554 02:05:11,063 --> 02:05:14,866 AND SOME ISSUES INVOLVED IN THE 2555 02:05:14,866 --> 02:05:16,668 WORK THE DATA SHARING GUIDANCE 2556 02:05:16,668 --> 02:05:20,305 AND HOW MUCH IT TAKES TO GET 2557 02:05:20,305 --> 02:05:21,073 THROUGH THE PROCESS. 2558 02:05:21,073 --> 02:05:23,175 THE GOAL WAS TO GET US ALL 2559 02:05:23,175 --> 02:05:24,710 ALIGNED AND GET ALL THE ARMS OF 2560 02:05:24,710 --> 02:05:29,214 THE OCTOPUS FUNCTIONING TOGETHER 2561 02:05:29,214 --> 02:05:39,758 AND SO THE IDEA IS WE DON'T GET 2562 02:05:48,834 --> 02:05:53,405 THE CALL AND IT SUPERSEDES AND 2563 02:05:53,405 --> 02:05:55,107 WHERE HE NEED TO GET ALIGNED AND 2564 02:05:55,107 --> 02:05:55,841 WE HAVE THE SUPPORT OF THE 2565 02:05:55,841 --> 02:06:03,849 DIRECTOR TO DO THIS. 2566 02:06:03,849 --> 02:06:04,883 >> WE'VE ALREADY FALLEN 2567 02:06:04,883 --> 02:06:09,254 BEHIND -- YAY. 2568 02:06:09,254 --> 02:06:10,422 IT'S AN INDIGENOUS MEETING BUT 2569 02:06:10,422 --> 02:06:11,890 WE HAVE TO THINK ABOUT OUR 2570 02:06:11,890 --> 02:06:12,090 PANEL. 2571 02:06:12,090 --> 02:06:17,896 SORRY. 2572 02:06:17,896 --> 02:06:22,367 TURNING TO OUR PANEL IT'S TIME 2573 02:06:22,367 --> 02:06:23,835 FOR MUSICAL CHAIRS -- THEY STAY. 2574 02:06:23,835 --> 02:06:24,169 THEY'RE FIRST. 2575 02:06:24,169 --> 02:06:31,309 WE PLANNED AHEAD. 2576 02:06:31,309 --> 02:06:33,612 A COUPLE MEANT ABOUT THE PANEL. 2577 02:06:33,612 --> 02:06:36,181 DR. WALTERS WILL START US OFF 2578 02:06:36,181 --> 02:06:39,918 AND CONFUSE YOU WITH OUR 2579 02:06:39,918 --> 02:06:40,252 MODERATORS. 2580 02:06:40,252 --> 02:06:43,555 WE HAVE KARINA, KATHY AND KAYLA. 2581 02:06:43,555 --> 02:06:45,524 WE'LL HAVE DR. WALTERS START OF 2582 02:06:45,524 --> 02:06:47,859 AND ASK TARGETED QUESTIONS TO 2583 02:06:47,859 --> 02:06:49,427 OUR PANELISTS AND PROVIDE THEM 2584 02:06:49,427 --> 02:06:52,764 AN OPPORTUNITY TO WEIGH IN. 2585 02:06:52,764 --> 02:06:54,933 HOWEVER, EACH PANELIST WILL HAVE 2586 02:06:54,933 --> 02:06:56,802 AN OPPORTUNITY TO COMMENT ON 2587 02:06:56,802 --> 02:06:57,536 EVERY QUESTION. 2588 02:06:57,536 --> 02:06:59,971 WE ASK YOU KEEP REMARKS BRIEF 2589 02:06:59,971 --> 02:07:01,573 OR IF YOU FEEL YOUR COMMENT HAS 2590 02:07:01,573 --> 02:07:02,641 ALREADY BEEN MADE OR DON'T FEEL 2591 02:07:02,641 --> 02:07:04,242 YOU WOULD LIKE TO MAKE A 2592 02:07:04,242 --> 02:07:05,544 COMMENT, PERFECTLY FINE TO SAY I 2593 02:07:05,544 --> 02:07:06,611 DON'T HAVE AN OPINION OR WOULD 2594 02:07:06,611 --> 02:07:11,650 LIKE TO THINK ABOUT THAT MORE. 2595 02:07:11,650 --> 02:07:13,718 THE NICE PART IS WE HAVE DAY TWO 2596 02:07:13,718 --> 02:07:15,854 TO GET OUR THOUGHTS TOGETHER. 2597 02:07:15,854 --> 02:07:17,522 WE'LL HEAR EVERYBODY'S COMMENTS 2598 02:07:17,522 --> 02:07:20,692 TODAY AND CAN GO BACK AND HAVE 2599 02:07:20,692 --> 02:07:23,195 DINNER TOGETHER WE CAN TALK AND 2600 02:07:23,195 --> 02:07:27,065 THINK ABOUT IT. 2601 02:07:27,065 --> 02:07:30,735 TOMORROW WE'LL BE IN GROUPS 2602 02:07:30,735 --> 02:07:32,804 ABOUT SIX PEOPLES AND TALK ABOUT 2603 02:07:32,804 --> 02:07:34,840 POLICY PIECES AND CHARGE YOU 2604 02:07:34,840 --> 02:07:37,209 WITH SPENDING AN HOUR TOGETHER 2605 02:07:37,209 --> 02:07:39,544 REALLY THINKING ABOUT WHAT ARE 2606 02:07:39,544 --> 02:07:40,645 THE WRITTEN KEY RECOMMENDATIONS 2607 02:07:40,645 --> 02:07:43,748 YOU WANT RECORDED AND GIVEN BACK 2608 02:07:43,748 --> 02:07:44,115 TO THE NIH. 2609 02:07:44,115 --> 02:07:47,853 ON TOP OF THAT I WOULD LIKE TO 2610 02:07:47,853 --> 02:07:49,821 OFFER WE HAVE A LOT OF QUESTIONS 2611 02:07:49,821 --> 02:07:53,358 HERE TODAY AND WE DON'T HAVE 2612 02:07:53,358 --> 02:07:54,092 CLEAR ANSWERS. 2613 02:07:54,092 --> 02:07:56,728 WE HAVE BRILLIANT SCIENTISTS IN 2614 02:07:56,728 --> 02:07:57,729 THE ROOM WITH FANTASTIC LIVED 2615 02:07:57,729 --> 02:07:59,631 EXPERIENCE TO DRAW ON. 2616 02:07:59,631 --> 02:08:02,033 WE WOULD LOVE TO HEAR YOUR INPUT 2617 02:08:02,033 --> 02:08:03,702 ON AS MANY QUESTIONS AS YOU'D 2618 02:08:03,702 --> 02:08:05,136 LIKE TO PROVIDE IT ON EVEN IF 2619 02:08:05,136 --> 02:08:06,171 IT'S NOT DIRECTED FOR YOUR 2620 02:08:06,171 --> 02:08:09,207 PANEL. 2621 02:08:09,207 --> 02:08:10,208 SO THERE WILL BE OPPORTUNITY IF 2622 02:08:10,208 --> 02:08:12,177 ANYBODY WOULD LIKE TO FOLLOW UP 2623 02:08:12,177 --> 02:08:15,847 AFTER THE MEETING WE'RE HAPPY TO 2624 02:08:15,847 --> 02:08:18,116 SET UP ADDITIONAL MEETINGS TO 2625 02:08:18,116 --> 02:08:19,718 CHAT THROUGH TOPICS AND CHAT 2626 02:08:19,718 --> 02:08:20,886 THROUGH YOUR TRIBAL COUNCIL OR 2627 02:08:20,886 --> 02:08:22,854 RESEARCH WORK OR COMMUNITY ABOUT 2628 02:08:22,854 --> 02:08:23,655 THESE QUESTIONS. 2629 02:08:23,655 --> 02:08:26,591 AND WE'RE ALSO VERY HAPPY TO 2630 02:08:26,591 --> 02:08:27,692 TAKE WRITTEN ANSWERS IF ANYBODY 2631 02:08:27,692 --> 02:08:29,928 WANTS TO REFLECT ON THIS AND PUT 2632 02:08:29,928 --> 02:08:32,697 IT DOWN IN WRITING AND SEND BACK 2633 02:08:32,697 --> 02:08:34,499 OUR WAY WE WELCOME YOU TO DO 2634 02:08:34,499 --> 02:08:36,668 THAT AND WOULD LIKE TO INVITE 2635 02:08:36,668 --> 02:08:38,803 YOU TO DO THAT. 2636 02:08:38,803 --> 02:08:41,806 THERE WILL BE A FORMAL WRITTEN 2637 02:08:41,806 --> 02:08:42,574 REPORT AFTER TO THE MEETING TO 2638 02:08:42,574 --> 02:08:44,409 COLLECT THE RESPONSES WE GET. 2639 02:08:44,409 --> 02:08:47,379 THAT'S A WAY FOR YOU TO HOLD THE 2640 02:08:47,379 --> 02:08:48,813 NIH ACCOUNTABLE ON INPUT YOU'RE 2641 02:08:48,813 --> 02:08:50,248 GIVING TO US. 2642 02:08:50,248 --> 02:08:51,650 WE'LL HAVE A WRITTEN REPORT AND 2643 02:08:51,650 --> 02:08:53,485 GOING TO PUBLISH IT AND MAKE IT 2644 02:08:53,485 --> 02:08:56,187 CLEAR TO THE COMMUNITY WHAT WE 2645 02:08:56,187 --> 02:08:58,523 HAVE BEEN TOLD FROM THE EXPERTS 2646 02:08:58,523 --> 02:09:00,325 IN THIS ROOM AS WELL AS THE 2647 02:09:00,325 --> 02:09:02,961 INPUT WE'VE GOTTEN FROM THOSE 2648 02:09:02,961 --> 02:09:05,864 LISTENING SESSIONS HELD THUS FAR 2649 02:09:05,864 --> 02:09:07,532 AND THE FORMER TRIBAL 2650 02:09:07,532 --> 02:09:08,767 CONSULTATIONS WE'LL BE HOLDING. 2651 02:09:08,767 --> 02:09:13,571 I WANT TO ACKNOWLEDGE WE'VE 2652 02:09:13,571 --> 02:09:15,173 GIVEN YOU FEW MINUTES TO ADDRESS 2653 02:09:15,173 --> 02:09:17,909 SUCH A COMPLICATED TOPIC AND 2654 02:09:17,909 --> 02:09:19,110 EXPECT AND HOPE TO BE CONTINUING 2655 02:09:19,110 --> 02:09:19,978 THE CONVERSATION WITH YOU ON THE 2656 02:09:19,978 --> 02:09:22,614 TOPIC. 2657 02:09:22,614 --> 02:09:24,582 WITH THAT, I'LL HAND IT OVER TO 2658 02:09:24,582 --> 02:09:27,552 DR. WALTERS TO GET STARTED ON 2659 02:09:27,552 --> 02:09:27,886 OUR QUESTIONS. 2660 02:09:27,886 --> 02:09:29,554 >> ALL RIGHT. 2661 02:09:29,554 --> 02:09:29,921 GREAT. 2662 02:09:29,921 --> 02:09:35,727 PANEL 1, NEW FOR BEING HERE. 2663 02:09:35,727 --> 02:09:39,864 WE'VE GOT JESSICA BLANCHARD AND 2664 02:09:39,864 --> 02:09:50,408 KIMBERLY HAMPTON AND OUR ALIKA 2665 02:09:52,110 --> 02:09:57,749 MAUNAKEA AND CLIFF POODRY AND WE 2666 02:09:57,749 --> 02:09:58,817 WERE GOING TO HAVE ATTORNEYS 2667 02:09:58,817 --> 02:09:59,084 PRESENT. 2668 02:09:59,084 --> 02:10:07,692 WE DON'T BECAUSE THEY GOT COVID, 2669 02:10:07,692 --> 02:10:09,027 UNFORTUNATELY. 2670 02:10:09,027 --> 02:10:09,694 I'LL SHIFT THE CONVERSATION A 2671 02:10:09,694 --> 02:10:10,028 LITTLE BIT. 2672 02:10:10,028 --> 02:10:12,497 I WANT TO START WITH A MORE 2673 02:10:12,497 --> 02:10:14,966 BASIC QUESTION AND A WARM UP 2674 02:10:14,966 --> 02:10:17,435 QUESTION A LITTLE BIT. 2675 02:10:17,435 --> 02:10:21,339 THE QUESTION IS WHAT DOES 2676 02:10:21,339 --> 02:10:23,608 INDIGENOUS DATA SOVEREIGNTY MEAN 2677 02:10:23,608 --> 02:10:24,909 TO YOU AND WHAT DO YOU THINK IS 2678 02:10:24,909 --> 02:10:26,711 CRITICAL THAT NEEDS TO BE ON THE 2679 02:10:26,711 --> 02:10:37,122 FLOOR FOR US TO DISCUSS? 2680 02:10:37,655 --> 02:10:40,925 >> SO I HAVE LOTS OF NOTES AND 2681 02:10:40,925 --> 02:10:41,126 STUFF. 2682 02:10:41,126 --> 02:10:43,595 THE PERSPECTIVE I COME FROM IS 2683 02:10:43,595 --> 02:10:46,898 IN TRIBAL GOVERNMENT AS A TRIBAL 2684 02:10:46,898 --> 02:10:50,835 LEADER AND AS A FAIRLY NEW 2685 02:10:50,835 --> 02:10:51,136 RESEARCHER. 2686 02:10:51,136 --> 02:10:51,836 INDIGENOUS DATA SOVEREIGNTY TO 2687 02:10:51,836 --> 02:10:54,706 ME IS THE RIGHT OF EACH NATIVE 2688 02:10:54,706 --> 02:10:59,844 NATION TO GOVERN THE COLLECTION 2689 02:10:59,844 --> 02:11:03,014 AND OWNERSHIP OF THE DATA AND 2690 02:11:03,014 --> 02:11:05,116 WANT TO GIVE AUTHORITY BACK TO 2691 02:11:05,116 --> 02:11:05,784 THE INDIGENOUS TRIBES. 2692 02:11:05,784 --> 02:11:08,319 HOWEVER, AT THE SAME TIME WE DO 2693 02:11:08,319 --> 02:11:10,088 RECOGNIZE THERE'S SIGNIFICANT 2694 02:11:10,088 --> 02:11:14,426 OBSTACLES TO REBUILDING 2695 02:11:14,426 --> 02:11:15,326 EFFECTIVE SOVEREIGNTY SYSTEMS 2696 02:11:15,326 --> 02:11:18,163 AND THE RESOURCES, TIME AND 2697 02:11:18,163 --> 02:11:20,598 PARTNERSHIPS WITH OTHER NATIVE 2698 02:11:20,598 --> 02:11:23,835 NATIONS, OTHER GOVERNMENTS AND 2699 02:11:23,835 --> 02:11:25,470 ADDITIONAL DATA AGENTS. 2700 02:11:25,470 --> 02:11:29,174 WE UNDERSTAND WE NEED TO 2701 02:11:29,174 --> 02:11:30,842 PRACTICE PATIENCE AS LONG AS 2702 02:11:30,842 --> 02:11:35,780 THINGS CONTINUE TO MOVE FORWARD. 2703 02:11:35,780 --> 02:11:36,748 >> THANK YOU. 2704 02:11:36,748 --> 02:11:37,582 WE'LL GO DOWN THE LINE. 2705 02:11:37,582 --> 02:11:39,284 >> WHAT SHE SAID. 2706 02:11:39,284 --> 02:11:49,694 I WANT TO PASS COMMENT. 2707 02:11:49,961 --> 02:11:51,663 >> I'M NOT SURE I CAN ANSWER 2708 02:11:51,663 --> 02:11:54,632 THAT DIRECTLY BUT AS MOST ARE 2709 02:11:54,632 --> 02:12:01,673 PROBABLY AWARE NATIVE HAWAIIANS 2710 02:12:01,673 --> 02:12:02,340 ARE NOT RECOGNIZED AS FEDERAL 2711 02:12:02,340 --> 02:12:07,445 ENTITIES. 2712 02:12:07,445 --> 02:12:09,681 WE CALL FOR MORE COMMUNITIES 2713 02:12:09,681 --> 02:12:10,748 WITH SOVEREIGNTY IN GENERAL AND 2714 02:12:10,748 --> 02:12:14,419 WHAT THAT MEANS TO US. 2715 02:12:14,419 --> 02:12:17,255 MANY AREN'T AWARE THE HISTORICAL 2716 02:12:17,255 --> 02:12:22,127 CHANGES THAT HAPPENED DURING A 2717 02:12:22,127 --> 02:12:24,195 TUMULTUOUS PERIOD OF TIME AND 2718 02:12:24,195 --> 02:12:26,698 WHEN I THINK OF DATA SOVEREIGNTY 2719 02:12:26,698 --> 02:12:29,234 WILL BE AKIN TO THE BROADER 2720 02:12:29,234 --> 02:12:31,369 CONTEXT OF INDIVIDUAL'S RIGHTS 2721 02:12:31,369 --> 02:12:32,370 AS WELL COMMUNITY RIGHTS TO 2722 02:12:32,370 --> 02:12:34,706 THEIR OWN SELF-DETERMINATION AND 2723 02:12:34,706 --> 02:12:35,840 UNDERSTANDING THEIR OWN VIEWS 2724 02:12:35,840 --> 02:12:37,942 AND RESPECTING THAT PART OF THE 2725 02:12:37,942 --> 02:12:39,844 PROCESS FOR US WHAT IT LOOKS 2726 02:12:39,844 --> 02:12:43,148 LIKE IN TERMS OF THE RESEARCH IS 2727 02:12:43,148 --> 02:12:45,950 CULTURAL AND ANCESTRAL AND 2728 02:12:45,950 --> 02:12:46,918 COMMUNITY-BASED ORGANIZATIONS 2729 02:12:46,918 --> 02:12:49,521 SUCH AS OTHER ORGANIZATIONS LIKE 2730 02:12:49,521 --> 02:12:51,489 HAWAIIAN HOMELANDS WITH 2731 02:12:51,489 --> 02:12:54,192 COMMUNITY LEADERS AND CULTURAL 2732 02:12:54,192 --> 02:12:57,328 PRACTITIONERS CAN BE RECOGNIZED 2733 02:12:57,328 --> 02:12:58,363 IN A DATA SOVEREIGNTY FRAMEWORK 2734 02:12:58,363 --> 02:13:01,166 AND HAVE BEEN WORKING ALONGSIDE 2735 02:13:01,166 --> 02:13:04,135 PARTNERS AND NATIVE HAWAIIANS TO 2736 02:13:04,135 --> 02:13:05,937 UNDERSTAND HOW INFORMATION WE 2737 02:13:05,937 --> 02:13:07,839 COLLECT DATA WE COLLECT AND 2738 02:13:07,839 --> 02:13:09,140 SAMPLES WE COLLECT ARE SHARED IN 2739 02:13:09,140 --> 02:13:11,876 A RECIPROCAL WAY AS WELL AS 2740 02:13:11,876 --> 02:13:12,610 UNDERSTANDING HOW TO WORK 2741 02:13:12,610 --> 02:13:15,547 TOGETHER WITH INTEGRATING 2742 02:13:15,547 --> 02:13:18,883 CULTURAL KNOWLEDGE AND TO 2743 02:13:18,883 --> 02:13:20,251 AMPLIFY THE RESEARCH IN ITSELF 2744 02:13:20,251 --> 02:13:23,121 AND TO CREATE A BROADER IMPACT 2745 02:13:23,121 --> 02:13:25,323 TO THE COMMUNITY. 2746 02:13:25,323 --> 02:13:29,561 IN CASES WHERE THAT SOVEREIGNTY 2747 02:13:29,561 --> 02:13:32,564 IS UNCLEAR COMMON STRATEGY IS 2748 02:13:32,564 --> 02:13:35,233 WHAT WE DO RECOGNIZE NATIVE 2749 02:13:35,233 --> 02:13:35,833 HAWAIIAN ORGANIZATIONS AND 2750 02:13:35,833 --> 02:13:37,702 COMMUNITY MEMBERS AND WE CONSULT 2751 02:13:37,702 --> 02:13:39,837 WITH THEM TO ENSURE DECISIONS 2752 02:13:39,837 --> 02:13:41,072 ARE GUIDED BY COLLECTIVE 2753 02:13:41,072 --> 02:13:42,073 COMMUNITY VALUES. 2754 02:13:42,073 --> 02:13:44,175 WE USE ETHICAL APPROACHES THAT 2755 02:13:44,175 --> 02:13:46,444 INCLUDE THE SYSTEM IN OUR 2756 02:13:46,444 --> 02:13:47,845 COMMUNITY WHICH EMPHASIZES 2757 02:13:47,845 --> 02:13:50,348 RESPECT FOR GENOLOGICAL TIES, 2758 02:13:50,348 --> 02:13:53,985 RELATIONSHIPS WITH THE LAND AND 2759 02:13:53,985 --> 02:13:54,919 RELATIONSHIP OF TRIBAL KNOWLEDGE 2760 02:13:54,919 --> 02:13:56,154 AS A COMMUNAL ASPECT. 2761 02:13:56,154 --> 02:13:58,456 THAT'S PARTS OF OUR PROCESS IN 2762 02:13:58,456 --> 02:13:59,824 ENGAGING COMMUNITIES AND WORKING 2763 02:13:59,824 --> 02:14:05,396 WITH DATA AND SPECIMENS FROM 2764 02:14:05,396 --> 02:14:06,598 THOSE COMMUNITIES THAT THE 2765 02:14:06,598 --> 02:14:07,832 INFORMATION SHOULD SERVE. 2766 02:14:07,832 --> 02:14:14,439 PASS IT ALONG. 2767 02:14:14,439 --> 02:14:15,840 >> IN MY -- I SERVE A LOT OF 2768 02:14:15,840 --> 02:14:18,209 DIFFERENT ROLES AND IN MY ROLE 2769 02:14:18,209 --> 02:14:21,312 AS A TRIBAL LEADER IN WORKING 2770 02:14:21,312 --> 02:14:25,984 WITH OUR COMMUNITY, I THINK 2771 02:14:25,984 --> 02:14:28,486 ABOUT WHAT INDIGENOUS DATA 2772 02:14:28,486 --> 02:14:32,423 SOVEREIGNTY MEANS AND AS WE 2773 02:14:32,423 --> 02:14:35,827 ADVOCATE FOR PROTECTION OF OUR 2774 02:14:35,827 --> 02:14:38,429 RIGHTS AND TRIBE AND SOVEREIGNTY 2775 02:14:38,429 --> 02:14:39,864 AND LAND AND WATER, WE THINK 2776 02:14:39,864 --> 02:14:43,835 ABOUT WHAT WE NEED TO DO BUT WE 2777 02:14:43,835 --> 02:14:48,139 HAVEN'T BEEN THINKING ABOUT 2778 02:14:48,139 --> 02:14:49,307 ENOUGH ABOUT DATA SOVEREIGNTY. 2779 02:14:49,307 --> 02:14:52,143 WHAT DOES THAT REALLY MEAN? 2780 02:14:52,143 --> 02:14:57,649 IT'S IMPORTANT THAT TRIBAL 2781 02:14:57,649 --> 02:14:58,816 LEADERS UNDERSTAND WHAT THAT 2782 02:14:58,816 --> 02:15:00,551 DATA SOVEREIGNTY REALLY MEANS. 2783 02:15:00,551 --> 02:15:02,920 IT MEANS IT'S OUR STORIES. 2784 02:15:02,920 --> 02:15:04,722 IT'S ABOUT US. 2785 02:15:04,722 --> 02:15:07,825 IT'S ABOUT WHO WE ARE. 2786 02:15:07,825 --> 02:15:08,993 AND WE SHOULD PROTECT THAT JUST 2787 02:15:08,993 --> 02:15:17,302 LIKE WE PROTECT EVERYTHING ELSE. 2788 02:15:17,302 --> 02:15:20,038 WHEN I SAY THIS IS DATA 2789 02:15:20,038 --> 02:15:22,073 SOVEREIGNTY AND WHAT'S THIS 2790 02:15:22,073 --> 02:15:22,373 MEAN? 2791 02:15:22,373 --> 02:15:24,475 IT'S ABOUT US. 2792 02:15:24,475 --> 02:15:26,311 AS WE HAVE THIS CONVERSATION 2793 02:15:26,311 --> 02:15:32,350 JUST THIS MORNING I THINK ABOUT 2794 02:15:32,350 --> 02:15:34,052 RESEARCHERS COMING TO US I SIT 2795 02:15:34,052 --> 02:15:38,022 ON THE TAC AND I ADVOCATE FOR 2796 02:15:38,022 --> 02:15:39,857 THAT CAPACITY BUILDING SO WE'RE 2797 02:15:39,857 --> 02:15:43,528 TELLING THE STORY. 2798 02:15:43,528 --> 02:15:46,831 THE TRIBE, THE NATION -- IT'S 2799 02:15:46,831 --> 02:15:47,365 ABOUT US. 2800 02:15:47,365 --> 02:15:48,433 THERE SHOULDN'T BE ANYBODY ELSE 2801 02:15:48,433 --> 02:15:51,936 TELLING THE STORY. 2802 02:15:51,936 --> 02:15:53,671 IT SHOULD BE US. 2803 02:15:53,671 --> 02:15:55,840 THAT'S WHY I ADVOCATE FOR THE 2804 02:15:55,840 --> 02:16:00,211 CAPACITY BUILDING BECAUSE WE 2805 02:16:00,211 --> 02:16:06,217 KNOW THERE ARE PEOPLE LIKE US TO 2806 02:16:06,217 --> 02:16:09,721 HELP GATHER AN PROTECT THE DATA 2807 02:16:09,721 --> 02:16:14,425 TO START ADDRESSING SOME OF 2808 02:16:14,425 --> 02:16:15,360 THESE ISSUES THAT HAVE CREATED A 2809 02:16:15,360 --> 02:16:19,097 LOT OF PROBLEMS IN OUR 2810 02:16:19,097 --> 02:16:19,464 COMMUNITY. 2811 02:16:19,464 --> 02:16:21,599 SO IT'S BEEN INTERESTING 2812 02:16:21,599 --> 02:16:23,401 SIGNATURE HERE THIS MORNING AND 2813 02:16:23,401 --> 02:16:24,736 LISTEN TO EVERYBODY TALK ABOUT 2814 02:16:24,736 --> 02:16:27,839 COMMUNITY AND TALK ABOUT THE 2815 02:16:27,839 --> 02:16:31,843 RESEARCH BUT IT'S ABOUT THE 2816 02:16:31,843 --> 02:16:42,353 INDIGENOUS SOF -- SOVEREIGNTY 2817 02:16:45,723 --> 02:16:47,825 AND WHAT ALIGNS WITH THE 2818 02:16:47,825 --> 02:16:48,693 PURPOSEFUL RESEARCH BECAUSE 2819 02:16:48,693 --> 02:16:51,829 ANYBODY CAN DO THIS. 2820 02:16:51,829 --> 02:16:57,568 WE'VE SEEN IT. 2821 02:16:57,568 --> 02:16:58,669 WE'VE SEEN THE EXPLOITATION AND 2822 02:16:58,669 --> 02:16:59,837 IT'S IMPORTANT TO HAVE THE 2823 02:16:59,837 --> 02:17:06,210 CONNECTION WITH THE TRIBE AND TO 2824 02:17:06,210 --> 02:17:10,615 UNDERSTAND WHAT DOES DATA 2825 02:17:10,615 --> 02:17:15,887 SOVEREIGNTY MEAN THE NATION AND 2826 02:17:15,887 --> 02:17:23,828 UNDERSTAND RELATIONSHIPS AND 2827 02:17:23,828 --> 02:17:29,767 TRUST AND STORIES HAVE SHARED BY 2828 02:17:29,767 --> 02:17:30,201 US. 2829 02:17:30,201 --> 02:17:39,844 THANK YOU. 2830 02:17:39,844 --> 02:17:42,513 I'M HERE BECAUSE KARINA SAID TO 2831 02:17:42,513 --> 02:17:43,681 COME AND SHE'S ONE OF THOSE 2832 02:17:43,681 --> 02:17:46,284 PEOPLE WHO SAID TO COME YOU SHOW 2833 02:17:46,284 --> 02:17:47,852 UP AND I DIDN'T EXPECT TO BE ON 2834 02:17:47,852 --> 02:17:50,521 A PANEL BECAUSE I'M NOT NATIVE. 2835 02:17:50,521 --> 02:17:53,591 I DON'T WANT TO SPEAK FOR THE 2836 02:17:53,591 --> 02:17:58,196 NATIVE COMMUNITY. 2837 02:17:58,196 --> 02:18:04,769 I DEFINITELY SEE MYSELF AS AN 2838 02:18:04,769 --> 02:18:06,804 ALLY BUT THERE'S CONTENTION WITH 2839 02:18:06,804 --> 02:18:09,607 THAT TERM AND THAT'S SOMETHING I 2840 02:18:09,607 --> 02:18:12,643 CONTINUALLY NAVIGATE AND FEEL 2841 02:18:12,643 --> 02:18:19,350 PRIVILEGED I CAN BE IN THE SPACE 2842 02:18:19,350 --> 02:18:20,251 WITH YOU ALL AND YOUR 2843 02:18:20,251 --> 02:18:20,685 BRILLIANCE. 2844 02:18:20,685 --> 02:18:22,053 I THINK I CAN JUST SHARE WHAT 2845 02:18:22,053 --> 02:18:23,821 I'VE LEARNED FROM THE COMMUNITY 2846 02:18:23,821 --> 02:18:29,393 OVER THE YEARS. 2847 02:18:29,393 --> 02:18:35,833 TWO THINGS THINKING ABOUT DATA 2848 02:18:35,833 --> 02:18:37,502 SOVEREIGNTY CENTERED ON 2849 02:18:37,502 --> 02:18:39,003 RELATIONSHIP AND WHEN I SEE 2850 02:18:39,003 --> 02:18:40,404 RESEARCH BEING DOWN AND WHAT THE 2851 02:18:40,404 --> 02:18:42,440 COMMUNITY EMBRACES IT'S WHEN 2852 02:18:42,440 --> 02:18:45,776 PEOPLE HAVE PILINA WITH EACH 2853 02:18:45,776 --> 02:18:46,143 OTHER. 2854 02:18:46,143 --> 02:18:47,845 LONG LASTING COMMITMENT BEYOND 2855 02:18:47,845 --> 02:18:54,819 THE GRANT AND RESEARCH PROJECT. 2856 02:18:54,819 --> 02:18:57,088 I THINK THE THINGS WE TALKED 2857 02:18:57,088 --> 02:18:58,523 ABOUT AND FOUND IN THE 2858 02:18:58,523 --> 02:19:03,194 COMMITMENT AND DEDICATION, 2859 02:19:03,194 --> 02:19:10,768 THAT'S BEYOND CAREERS AND JOBS 2860 02:19:10,768 --> 02:19:18,643 AND CVs AND FIGURING OUT 2861 02:19:18,643 --> 02:19:18,943 COMMUNITIES. 2862 02:19:18,943 --> 02:19:22,346 I SEE WHEN THE UNIVERSITY TALKS 2863 02:19:22,346 --> 02:19:24,048 ABOUT WHAT COMMUNITY THEY'RE 2864 02:19:24,048 --> 02:19:26,017 ENGAGING WITH IT'S TYPICALLY 2865 02:19:26,017 --> 02:19:27,051 INSTITUTIONS. 2866 02:19:27,051 --> 02:19:28,352 IT'S TYPICALLY AGENCIES. 2867 02:19:28,352 --> 02:19:30,488 AND A LOT OF THE TIMES THE 2868 02:19:30,488 --> 02:19:31,822 AGENCIES AND INSTITUTIONS ARE 2869 02:19:31,822 --> 02:19:34,759 REPRESENTED BY PEOPLE WHO AREN'T 2870 02:19:34,759 --> 02:19:35,826 FROM THE COMMUNITY. 2871 02:19:35,826 --> 02:19:39,130 SO WHAT WE'VE BEEN DOING IS 2872 02:19:39,130 --> 02:19:44,001 ENGAGING THE EVERYDAY COMMUNITY 2873 02:19:44,001 --> 02:19:51,842 MEMBERS AND SAY IT'S FOR THE 2874 02:19:51,842 --> 02:19:55,846 COMMUNITY WITH THE COMMUNITY. 2875 02:19:55,846 --> 02:19:57,648 PEOPLE EXPERIENCING THE IMPACT 2876 02:19:57,648 --> 02:19:59,283 OF THE RESEARCH AND IN THE 2877 02:19:59,283 --> 02:20:00,184 NECESSARILY PEOPLE WITH TITLES 2878 02:20:00,184 --> 02:20:03,854 WHO GET TO SAY WHAT THEY THINK 2879 02:20:03,854 --> 02:20:08,893 IS BEST FOR THE COMMUNITY. 2880 02:20:08,893 --> 02:20:09,327 THANK YOU. 2881 02:20:09,327 --> 02:20:14,365 >> I DON'T FLOW -- KNOW WHAT I 2882 02:20:14,365 --> 02:20:15,566 CAN REALLY ADD. 2883 02:20:15,566 --> 02:20:16,968 ALL OF THIS IS RIGHT ON. 2884 02:20:16,968 --> 02:20:21,105 MY COMMUNITY IS REALLY SMALL. 2885 02:20:21,105 --> 02:20:23,608 WE HAVE LESS THAN 200 TRIBAL 2886 02:20:23,608 --> 02:20:24,675 MEMBERS SPREAD OVER THE STATE 2887 02:20:24,675 --> 02:20:25,476 AND DOWN SOUTH. 2888 02:20:25,476 --> 02:20:31,749 I DON'T REALLY KNOW WHAT I CAN 2889 02:20:31,749 --> 02:20:39,857 ADD EXCEPT MAYBE A PART CAN BE 2890 02:20:39,857 --> 02:20:42,493 AROUND LONG-TERM CONSISTENT 2891 02:20:42,493 --> 02:20:43,594 CHECK-INS WITH THE TRIBES AND 2892 02:20:43,594 --> 02:20:45,029 TRIBAL COUNCILS AN GOVERNMENTS 2893 02:20:45,029 --> 02:20:46,597 CHANGE AND THE FOCUS CHANGES 2894 02:20:46,597 --> 02:20:51,669 WITHIN THE TRIBAL GOVERNMENTS. 2895 02:20:51,669 --> 02:20:52,670 MAYBE FREQUENT CONSISTENT 2896 02:20:52,670 --> 02:20:53,704 CHECK-INS TO MAKE SURE THE 2897 02:20:53,704 --> 02:20:54,205 PRIORITIES ARE STILL IN 2898 02:20:54,205 --> 02:21:03,547 ALIGNMENT. 2899 02:21:03,547 --> 02:21:06,517 >> I'LL CONCUR WITH A NON-NATIVE 2900 02:21:06,517 --> 02:21:07,251 RESEARCHER I FEEL LIKE MY 2901 02:21:07,251 --> 02:21:07,918 COMMENTS SHOULD BE MINIMAL IN 2902 02:21:07,918 --> 02:21:15,693 THE SPACE. 2903 02:21:15,693 --> 02:21:17,061 I'M NOT GOING TO SAY ANYTHING 2904 02:21:17,061 --> 02:21:20,531 BUT IS WHAT MY HUSBAND WOULD SAY 2905 02:21:20,531 --> 02:21:22,667 BUT -- AS A NON-NATIVE 2906 02:21:22,667 --> 02:21:25,069 RESEARCHER I THINK THERE'S A 2907 02:21:25,069 --> 02:21:35,513 PLACE IN THIS PRACTICE TO 2908 02:21:35,913 --> 02:21:46,390 PROMOTE ACCOUNTABILITY TO SPEAK 2909 02:21:47,925 --> 02:21:51,829 UP FOR DATA SOVEREIGNTY AT OUR 2910 02:21:51,829 --> 02:21:54,065 INSTITUTIONS AND IT'S MESSY. 2911 02:21:54,065 --> 02:21:55,332 THERE'S A LOT NUANCE TO 2912 02:21:55,332 --> 02:21:55,800 MICHELLE'S POINT. 2913 02:21:55,800 --> 02:21:59,837 I'M A NON-NATIVE RESEARCHER BUT 2914 02:21:59,837 --> 02:22:01,072 MY FAMILY IS NATIVE BY MARRIAGE. 2915 02:22:01,072 --> 02:22:08,546 ALL MY FAMILY'S NATIVE. 2916 02:22:08,546 --> 02:22:10,781 I PRETTY MUCH ONLY INTERACT WITH 2917 02:22:10,781 --> 02:22:15,386 INDIGENOUS PEOPLE AND SPACES. 2918 02:22:15,386 --> 02:22:19,323 I ALSO THINK ABOUT HOPEFULNESS 2919 02:22:19,323 --> 02:22:22,993 IN INDIGENOUS SOVEREIGNTY AND 2920 02:22:22,993 --> 02:22:23,894 ALSO THINK ABOUT INDIGENOUS DATA 2921 02:22:23,894 --> 02:22:24,929 SOVEREIGNTY AND THE BEAUTIFUL 2922 02:22:24,929 --> 02:22:31,001 WAY IT'S BEEN ARTICULATED THUS 2923 02:22:31,001 --> 02:22:37,875 FAR IS SO FAR ANDTHE POLICY 2924 02:22:37,875 --> 02:22:38,642 LEGALISTIC FRAMEWORK THEY ALIGN 2925 02:22:38,642 --> 02:22:40,411 WITH THAT THEY DON'T ALIGN. 2926 02:22:40,411 --> 02:22:42,179 HOW DID A POLICY INCORPORATE 2927 02:22:42,179 --> 02:22:46,417 THESE BEAUTIFUL STORIES OF 2928 02:22:46,417 --> 02:22:48,719 RELATIONSHIPS AND LAND AND 2929 02:22:48,719 --> 02:22:51,021 STORIES AND KIN AND BEING IN 2930 02:22:51,021 --> 02:22:52,089 COMMUNITY WITH ONE ANOTHER. 2931 02:22:52,089 --> 02:22:56,260 I THINK FOR ME AND MY PLACE IN 2932 02:22:56,260 --> 02:22:57,862 THIS WORK AND CONVERSATION AND 2933 02:22:57,862 --> 02:23:03,067 MY FAMILY IS THINKING ABOUT HOW 2934 02:23:03,067 --> 02:23:06,103 TO WORK WITHIN A FRAM WORK IN A 2935 02:23:06,103 --> 02:23:07,638 WAY THAT'S DYNAMIC AND BEAUTIFUL 2936 02:23:07,638 --> 02:23:09,540 AND MEANINGFUL AS THE THINGS 2937 02:23:09,540 --> 02:23:10,274 THAT HAVE ALREADY BEEN SAID 2938 02:23:10,274 --> 02:23:11,842 TODAY. 2939 02:23:11,842 --> 02:23:15,846 THANK YOU. 2940 02:23:15,846 --> 02:23:16,013 >> 2941 02:23:16,013 --> 02:23:18,949 >> THANK YOU. 2942 02:23:18,949 --> 02:23:21,018 WE'RE GOING TO ONLY ASK A COUPLE 2943 02:23:21,018 --> 02:23:22,887 MORE QUESTIONS AND IF THERE'S 2944 02:23:22,887 --> 02:23:26,423 SOMETHING YOU WANT TO EXPRESS OR 2945 02:23:26,423 --> 02:23:28,025 SHARE I AM NOT ASKING PLEASE GO 2946 02:23:28,025 --> 02:23:29,493 AHEAD AS WELL. 2947 02:23:29,493 --> 02:23:31,262 PROBABLY THE NEXT QUESTION AND 2948 02:23:31,262 --> 02:23:32,930 THEN WE'LL OPEN IT UP FOR 2949 02:23:32,930 --> 02:23:34,698 DISCUSSION FOR EVERYBODY TO 2950 02:23:34,698 --> 02:23:37,034 REFLECT ON WHAT YOU'VE SHARED. 2951 02:23:37,034 --> 02:23:41,238 I WANT TO KNOW A LITTLE BIT MORE 2952 02:23:41,238 --> 02:23:43,707 ABOUT EXAMPLES OF STRATEGIES OR 2953 02:23:43,707 --> 02:23:45,342 ACCOUNTABILITY YOU JUST RAISED. 2954 02:23:45,342 --> 02:23:47,011 I THINK THAT'S AN INTERESTING 2955 02:23:47,011 --> 02:23:49,480 QUESTION AND ALSO IF ANYONE 2956 02:23:49,480 --> 02:23:51,849 WANTS TO ADDRESS THE QUESTION 2957 02:23:51,849 --> 02:23:56,253 AROUND TRIBAL OR INDIGENOUS 2958 02:23:56,253 --> 02:23:59,824 JURISDICTION AND WHO DOES THAT 2959 02:23:59,824 --> 02:24:00,457 APPLY TO. 2960 02:24:00,457 --> 02:24:02,293 WHERE ARE THERE LIMITS OF THAT 2961 02:24:02,293 --> 02:24:05,362 AUTHORITY OR NOT AND TALK ABOUT 2962 02:24:05,362 --> 02:24:06,630 THAT BECAUSE THAT'S SOMETHING 2963 02:24:06,630 --> 02:24:08,933 WARE GRAPPLING WITH ON OUR END 2964 02:24:08,933 --> 02:24:09,633 ESPECIALLY WHEN WE START GOING 2965 02:24:09,633 --> 02:24:15,606 INTO URBAN SPACINGS AND OTHER 2966 02:24:15,606 --> 02:24:24,181 KINDS OF AND IT'S GOOD TO HAVE 2967 02:24:24,181 --> 02:24:26,317 THE CONVERSATION. 2968 02:24:26,317 --> 02:24:28,252 IF YOU HAVE COMMENTS ON KEY 2969 02:24:28,252 --> 02:24:28,919 ETHICAL CONSIDERATIONS WE SHOULD 2970 02:24:28,919 --> 02:24:30,621 BE THINKING ABOUT. 2971 02:24:30,621 --> 02:24:33,123 THOSE THREE ELEMENTS. 2972 02:24:33,123 --> 02:24:35,826 PICK WHICH ONE YOU WANT, 2973 02:24:35,826 --> 02:24:37,127 ACCOUNTABILITY, CULTURAL 2974 02:24:37,127 --> 02:24:38,329 CONSIDERATION OR THE 2975 02:24:38,329 --> 02:24:41,265 JURISDICTION AREA WHERE THE 2976 02:24:41,265 --> 02:24:42,199 BOUNDARIES AND HOW THEY SIT SO 2977 02:24:42,199 --> 02:24:50,274 YEAH. 2978 02:24:50,274 --> 02:24:52,076 >> SO DO YOU WANT ME TO ANSWER 2979 02:24:52,076 --> 02:24:57,081 EVERYTHING? 2980 02:24:57,081 --> 02:24:59,116 >> YOU CAN START AND WE CAN 2981 02:24:59,116 --> 02:24:59,850 ROTATE BACK. 2982 02:24:59,850 --> 02:25:04,088 >> I WILL FIRST ADDRESS THE ONE 2983 02:25:04,088 --> 02:25:09,360 QUESTION ABOUT TRIBAL OR 2984 02:25:09,360 --> 02:25:10,794 INDIGENOUS JURISDICTIONS, WHAT 2985 02:25:10,794 --> 02:25:11,328 SHOULD BE RECOGNIZED AND 2986 02:25:11,328 --> 02:25:16,100 EXAMPLES. 2987 02:25:16,100 --> 02:25:18,202 I FEEL TRIBAL GOVERNMENT THE 2988 02:25:18,202 --> 02:25:22,539 MOST CAPABLE OF ONGOING DIALOGUE 2989 02:25:22,539 --> 02:25:24,675 REGARDING NIH'S DATA SOVEREIGNTY 2990 02:25:24,675 --> 02:25:24,942 POLICIES. 2991 02:25:24,942 --> 02:25:29,914 I HEARD SOMEONE ELSE SAY THEY 2992 02:25:29,914 --> 02:25:34,385 HAVE A SMALL COMMUNITY AND FROM 2993 02:25:34,385 --> 02:25:44,895 EYE TRIBE OF CHIPPEWA INDIANS 2994 02:25:45,429 --> 02:25:46,697 WITH 56,000 REGISTERED 2995 02:25:46,697 --> 02:25:50,367 THROUGHOUT U.S. AND SOME IN 2996 02:25:50,367 --> 02:25:50,668 CANADA. 2997 02:25:50,668 --> 02:25:55,039 FOR ME I THINK WITH OUR SIZE WE 2998 02:25:55,039 --> 02:26:03,847 CAN BE GUARANTEED WE HAVE 2999 02:26:03,847 --> 02:26:13,157 ENROLLED THEY'LL ASK WHAT IS 3000 02:26:13,157 --> 02:26:14,692 YOUR ETHNICITY AND OF COURSE 3001 02:26:14,692 --> 02:26:19,563 THEY'LL CHECK NATIVE AMERICAN. 3002 02:26:19,563 --> 02:26:21,265 FOR US IT'S IMPORTANT TO ADD 3003 02:26:21,265 --> 02:26:30,474 WHAT TRIBAL AFFILIATION. 3004 02:26:30,474 --> 02:26:33,577 I'M PRETTY POSITIVE THEY CHECK 3005 02:26:33,577 --> 02:26:36,413 THE NATIVE AMERICAN BOX. 3006 02:26:36,413 --> 02:26:39,183 WE'RE NEVER NOTIFIED THEY'RE NOT 3007 02:26:39,183 --> 02:26:40,651 INVOLVED AND THERE'S NATIVE DATA 3008 02:26:40,651 --> 02:26:41,952 OUT THERE BELONGING TO OUR 3009 02:26:41,952 --> 02:26:45,990 MEMBERS AND WE HAVE NO IDEA. 3010 02:26:45,990 --> 02:26:48,192 THAT WOULD BE HELPFUL IS TO ADD 3011 02:26:48,192 --> 02:26:53,664 A TRIBAL AFFILIATION. 3012 02:26:53,664 --> 02:26:55,833 AN EXAMPLE GIVEN BY OUR OTHER 3013 02:26:55,833 --> 02:26:56,967 BOARD MEMBERS IS THE NAVAJO 3014 02:26:56,967 --> 02:26:58,502 NATION. 3015 02:26:58,502 --> 02:26:59,837 THEY HAVE A HUMAN RESEARCH 3016 02:26:59,837 --> 02:27:04,241 REVIEW BOARD. 3017 02:27:04,241 --> 02:27:07,778 AND CONTROL RESEARCH SINCE 1996 3018 02:27:07,778 --> 02:27:11,849 WIN A 12-STEP PROCESS INCLUDING 3019 02:27:11,849 --> 02:27:13,484 COMMUNITY PARTNERS. 3020 02:27:13,484 --> 02:27:15,519 AND ALL DATA IS RETURNED TO THE 3021 02:27:15,519 --> 02:27:17,421 NAVAJO NATION AT THE END. 3022 02:27:17,421 --> 02:27:19,723 THAT'S IMPORTANT TO NOT JUST LET 3023 02:27:19,723 --> 02:27:22,693 OUR TRIBES KNOW WE HAVE TRIBAL 3024 02:27:22,693 --> 02:27:24,194 MEMBERS INVOLVED IN THE RESEARCH 3025 02:27:24,194 --> 02:27:28,799 BUT THE RESEARCH WILL BE 3026 02:27:28,799 --> 02:27:30,334 RETURNED OR GIVEN TO THE TRIBE 3027 02:27:30,334 --> 02:27:37,174 AT THE END. 3028 02:27:37,174 --> 02:27:39,843 >> I THINK ACCOUNTABILITY IS 3029 02:27:39,843 --> 02:27:47,818 VERY IMPORTANT. 3030 02:27:47,818 --> 02:27:58,328 IN THE PAST THERE HASN'T BEEN 3031 02:28:01,965 --> 02:28:07,538 SOME ARE HARD TO DRAW A SPECIFIC 3032 02:28:07,538 --> 02:28:09,173 GENERALIZATION OTHER THAN A 3033 02:28:09,173 --> 02:28:10,374 TRIBAL GOVERNMENT AND HONOR WHAT 3034 02:28:10,374 --> 02:28:11,842 WE SAY. 3035 02:28:11,842 --> 02:28:15,279 IT'S FRUSTRATING SOMETIMES WHEN 3036 02:28:15,279 --> 02:28:17,147 A COUNCIL APPROVES A RESEARCH 3037 02:28:17,147 --> 02:28:18,048 PROGRAM AND THEN TWO YEARS LATER 3038 02:28:18,048 --> 02:28:25,089 THERE'LL BE A CHANGE AND THEY'LL 3039 02:28:25,089 --> 02:28:31,328 PULL IT. 3040 02:28:31,328 --> 02:28:32,796 BUT THAT'S THE PREROGATIVE OF 3041 02:28:32,796 --> 02:28:33,931 THE PEOPLE AND MAY BE 3042 02:28:33,931 --> 02:28:35,532 CHALLENGING BUT IT IS THEIR 3043 02:28:35,532 --> 02:28:36,166 RIGHT AND WE NEED TO UNDERSTAND 3044 02:28:36,166 --> 02:28:43,140 THAT. 3045 02:28:43,140 --> 02:28:44,875 MUCH OF THE WORK WE'RE CONCERNED 3046 02:28:44,875 --> 02:28:55,385 WITH HAS TO DO WITH BEHAVIORS. 3047 02:28:55,619 --> 02:28:56,386 WE SHOULD ADVOCATE FOR BETTER 3048 02:28:56,386 --> 02:28:59,356 TRAINING AND DEVELOPING THE NEXT 3049 02:28:59,356 --> 02:29:00,023 GENERATION OF TALENT AMONG 3050 02:29:00,023 --> 02:29:06,096 NATIVE SCHOLARS IS A BIG 3051 02:29:06,096 --> 02:29:15,772 CHALLENGE IN ITSELF. 3052 02:29:15,772 --> 02:29:20,878 ATRAINING IN ETHICS AND RULES 3053 02:29:20,878 --> 02:29:31,321 AND REGULATIONS AND AS AU 3054 02:29:31,722 --> 02:29:34,458 HEADLINE 3055 02:29:34,458 --> 02:29:44,868 >> I'LL TRY TO CAPTURE WHAT THEY 3056 02:29:44,868 --> 02:29:48,672 SAID. 3057 02:29:48,672 --> 02:29:54,244 AND RESEARCH AND WHAT COULD BE 3058 02:29:54,244 --> 02:29:56,713 MADE APPLIED BROADLY AND 3059 02:29:56,713 --> 02:29:59,850 INVOLVES TO THE POPULATION 3060 02:29:59,850 --> 02:30:03,854 PLANNED. 3061 02:30:03,854 --> 02:30:14,531 THERE ARE MORE NATIVE HAWAIIAS 3062 02:30:15,065 --> 02:30:25,542 AND AND NATIVE HAWAIIANS AGAIN 3063 02:30:28,779 --> 02:30:31,848 THIS THOUGH MANY OF US LIVE 3064 02:30:31,848 --> 02:30:33,784 OUTSIDE HAWAI'I WE'RE 3065 02:30:33,784 --> 02:30:35,852 INTERTWINED WITH CULTURAL 3066 02:30:35,852 --> 02:30:40,591 IDENTITY WITH ENVIRONMENT, LAND, 3067 02:30:40,591 --> 02:30:46,129 RESOURCES AND HOLISTIC 3068 02:30:46,129 --> 02:30:47,064 PERSPECTIVE IN OUR UNDERSTANDING 3069 02:30:47,064 --> 02:30:50,367 OF THE WORLD AND DATA CAN HAVE 3070 02:30:50,367 --> 02:30:50,968 PROFOUND IMPLICATIONS FOR 3071 02:30:50,968 --> 02:30:52,836 OPPORTUNITIES AND WELL BEING IN 3072 02:30:52,836 --> 02:30:53,070 GENERAL. 3073 02:30:53,070 --> 02:31:02,312 I THINK THE JURISDICTIONS CAN 3074 02:31:02,312 --> 02:31:04,881 LOOK AT INDIGENOUS GROUPS AND 3075 02:31:04,881 --> 02:31:11,455 APPROVAL SHOULD BE SOUGHT FROM 3076 02:31:11,455 --> 02:31:13,257 HAWAIIAN SERVING ORGANIZATIONS 3077 02:31:13,257 --> 02:31:15,826 OR SERVING THOSE COMMUNITIES AND 3078 02:31:15,826 --> 02:31:17,828 THOSE ON MAIN LAND THERE'S A LOT 3079 02:31:17,828 --> 02:31:19,830 OF HAWAIIAN ORGANIZATIONS ARE 3080 02:31:19,830 --> 02:31:22,599 CONNECTED TO AND DEFINITELY NOT 3081 02:31:22,599 --> 02:31:25,435 TIED TO HAWAI'I. 3082 02:31:25,435 --> 02:31:26,770 HAWAIIAN COMMUNITY MEMBERS IN 3083 02:31:26,770 --> 02:31:28,572 THE URBAN CLUSTERS TYPICALLY 3084 02:31:28,572 --> 02:31:29,873 MAINTAIN THE STRONG CULTURAL 3085 02:31:29,873 --> 02:31:36,847 TIES AND THEIR DATA SHOULD BE 3086 02:31:36,847 --> 02:31:41,184 ENFORCED LOCALLY AND NATIONALLY. 3087 02:31:41,184 --> 02:31:43,120 I'LL TALK A LITTLE BIT ABOUT THE 3088 02:31:43,120 --> 02:31:44,221 HEALTH CENTER SERVING INDIGENOUS 3089 02:31:44,221 --> 02:31:46,390 POPULATIONS THAT ADOPT A MORE 3090 02:31:46,390 --> 02:31:47,791 FLEXIBLE APPROACH RECOGNIZING 3091 02:31:47,791 --> 02:31:53,297 THE STRUCTURE OF DIFFERENT 3092 02:31:53,297 --> 02:31:55,832 INDIGENOUS PEOPLES INCLUDING 3093 02:31:55,832 --> 02:32:03,840 NATIVE HAWAIIANS AND WHAT 3094 02:32:03,840 --> 02:32:11,214 CULTURAL CONSIDERATIONS AND 3095 02:32:11,214 --> 02:32:13,650 SHOULD INCLUDE THE CONCEPT OF 3096 02:32:13,650 --> 02:32:15,619 RESPONSIBILITY AND RESPECT AND 3097 02:32:15,619 --> 02:32:18,221 LOVE FOR THE LAND TO GUIDES HOW 3098 02:32:18,221 --> 02:32:24,227 THE DATA IS TREATED, SHARED AND 3099 02:32:24,227 --> 02:32:24,528 USED. 3100 02:32:24,528 --> 02:32:27,831 DATA IS PART OF OUR STORY AND 3101 02:32:27,831 --> 02:32:31,601 CRITICAL TO UNDERSTAND IT TIES 3102 02:32:31,601 --> 02:32:32,969 BACK TO MEANINGFUL INFORMATION 3103 02:32:32,969 --> 02:32:36,506 THAT'S PART OF OUR STORY. 3104 02:32:36,506 --> 02:32:37,641 TRADITIONAL ECOLOGICAL KNOWLEDGE 3105 02:32:37,641 --> 02:32:39,843 AND TIES TO THE LAND AND PEOPLE 3106 02:32:39,843 --> 02:32:44,948 AND THE ROLE OF CULTURAL 3107 02:32:44,948 --> 02:32:46,550 PRACTITIONERS SHOULD BE PART OF 3108 02:32:46,550 --> 02:32:48,785 THE GUARDIANSHIP INCLUDING DATA. 3109 02:32:48,785 --> 02:32:51,121 CENTRAL TO INCLUDE COMMUNITY 3110 02:32:51,121 --> 02:32:52,255 PARTICIPATION IN DECISION MAKING 3111 02:32:52,255 --> 02:32:55,826 PROCESSES REGARDING HOW DATA IS 3112 02:32:55,826 --> 02:32:59,830 COLLECTED, USED AND STORED AND 3113 02:32:59,830 --> 02:33:01,798 ALSO INVOLVES BIO SPECIMENS. 3114 02:33:01,798 --> 02:33:03,333 THERE'S DIFFERENT MODALITIES 3115 02:33:03,333 --> 02:33:06,236 RESEARCHERS CAN INCORPORATE IN 3116 02:33:06,236 --> 02:33:09,639 THEIR PROTOCOLS SUCH AS ONE 3117 02:33:09,639 --> 02:33:15,846 APPROACH WE USE IN HAWAI'I FOR 3118 02:33:15,846 --> 02:33:18,248 RECONCILIATION OF RESEARCH AND 3119 02:33:18,248 --> 02:33:19,616 PRIORITIES. 3120 02:33:19,616 --> 02:33:21,485 IN ADDITION TO THAT THE 3121 02:33:21,485 --> 02:33:22,786 FUNDAMENTAL GOALS OF 3122 02:33:22,786 --> 02:33:24,221 INCORPORATING THE CULTURAL 3123 02:33:24,221 --> 02:33:26,423 CONSIDERATIONS SHOULD BE TO AIM 3124 02:33:26,423 --> 02:33:28,358 TO ENHANCE RATHER THAN EXPLOIT 3125 02:33:28,358 --> 02:33:31,828 THE CULTURAL HEALTH AND SOCIAL 3126 02:33:31,828 --> 02:33:33,730 WELL BEING OF COMMUNITIES. 3127 02:33:33,730 --> 02:33:35,198 IN THAT RESPECT THERE ARE WAYS 3128 02:33:35,198 --> 02:33:38,135 WHERE NOT ONLY WORKING ALONGSIDE 3129 02:33:38,135 --> 02:33:39,069 COMMUNITIES AND HAVING THE 3130 02:33:39,069 --> 02:33:41,171 MEANINGFUL ENGAGEMENT AND 3131 02:33:41,171 --> 02:33:43,840 RELATIONSHIP BUT AS A NATIVE 3132 02:33:43,840 --> 02:33:47,844 HAWAIIAN RESEARCHER MYSELF IT'S 3133 02:33:47,844 --> 02:33:52,182 DEDICATING OUR ENTIRE CAREER TO 3134 02:33:52,182 --> 02:33:53,784 ENGAGE IN COMMUNITY-BASED 3135 02:33:53,784 --> 02:33:55,819 RESEARCH THAT THEN PROMOTES THE 3136 02:33:55,819 --> 02:33:59,089 HEALTH AND WELL BEING OF THOSE 3137 02:33:59,089 --> 02:34:01,892 INVOLVED IN THE STUDIES AND SO 3138 02:34:01,892 --> 02:34:04,194 IT'S A VERY DIFFERENT 3139 02:34:04,194 --> 02:34:06,530 PERSPECTIVE THAN THE TYPICAL 3140 02:34:06,530 --> 02:34:08,865 SITUATIONS WHERE YOU'RE TRYING 3141 02:34:08,865 --> 02:34:11,568 TO RECRUIT PARTICIPANTS IN THE 3142 02:34:11,568 --> 02:34:13,904 RESEARCH STUDY AND NEVER GO BACK 3143 02:34:13,904 --> 02:34:15,305 TO THEM AND THE INFORMATION IS 3144 02:34:15,305 --> 02:34:18,041 SEEN AS EXTRACTIVE BUT IT'S AN 3145 02:34:18,041 --> 02:34:18,909 ITERATIVE PROCESS WITH OUR 3146 02:34:18,909 --> 02:34:20,610 COMMUNITY THAT NEEDS TO HAPPEN. 3147 02:34:20,610 --> 02:34:23,380 OF COURSE THAT ENTAILS A LOT OF 3148 02:34:23,380 --> 02:34:25,682 MORE NUANCE AND DETAILED 3149 02:34:25,682 --> 02:34:26,383 LOGISTICAL CONCERNS AND POLICY 3150 02:34:26,383 --> 02:34:27,851 ISSUES BUT WE'LL HAVE TIME TO 3151 02:34:27,851 --> 02:34:33,757 DISCUSS THAT LATER I'M SURE. 3152 02:34:33,757 --> 02:34:39,429 >> I'M THINKING ABOUT THE 3153 02:34:39,429 --> 02:34:40,030 JURISDICTION QUESTION AND I 3154 02:34:40,030 --> 02:34:43,567 THINK IT'S IMPORTANT FOR 3155 02:34:43,567 --> 02:34:44,601 RESEARCHERS TO GET TO UNDERSTAND 3156 02:34:44,601 --> 02:34:47,270 THE TRIBAL NATION THEY'RE 3157 02:34:47,270 --> 02:34:49,639 WORKING WITH AND WHAT THEY 3158 02:34:49,639 --> 02:34:51,041 IDENTIFY AS THEIR JURISDICTION 3159 02:34:51,041 --> 02:34:53,710 BOTH LEGALLY AND IN THE 3160 02:34:53,710 --> 02:34:57,347 FRAMEWORK OF THEIR STORY. 3161 02:34:57,347 --> 02:34:59,516 SO I COULD SHARE OUR RESERVATION 3162 02:34:59,516 --> 02:35:05,922 IS A PIECE OF LAND THAT IS IN 3163 02:35:05,922 --> 02:35:07,390 TRUST AND THOSE ARE OUR 3164 02:35:07,390 --> 02:35:11,862 RESERVATIONS BUT OUR TRADITIONAL 3165 02:35:11,862 --> 02:35:12,429 COMMUNITIES ARE THROUGHOUT 3166 02:35:12,429 --> 02:35:13,763 ARIZONA. 3167 02:35:13,763 --> 02:35:17,033 OUR ENROLLMENT CRITERIA IS 3168 02:35:17,033 --> 02:35:22,672 ENROLLMENT CRITERIA THAT'S BEEN 3169 02:35:22,672 --> 02:35:23,840 CREATED AND NOT NECESSARILY 3170 02:35:23,840 --> 02:35:25,742 REFLECTING WHO WE ARE AS WOMEN. 3171 02:35:25,742 --> 02:35:27,043 PEOPLE NOT ENROLLED ARE INVOLVED 3172 02:35:27,043 --> 02:35:29,479 IN CEREMONY OR LIVING IN THE 3173 02:35:29,479 --> 02:35:30,013 COMMUNITY. 3174 02:35:30,013 --> 02:35:35,852 THEY JUST DON'T MEET THE SILLY 3175 02:35:35,852 --> 02:35:38,388 CRITERIA CREATED. 3176 02:35:38,388 --> 02:35:46,196 SO IT'S FOR RESEARCHERS TO 3177 02:35:46,196 --> 02:35:47,697 UNDERSTAND WHO ARE WE WORKING 3178 02:35:47,697 --> 02:35:48,965 WITH AND BUILDING THE 3179 02:35:48,965 --> 02:35:50,567 RELATIONSHIP OF WHO ARE WE 3180 02:35:50,567 --> 02:35:55,338 WORKING WITH AND HOW IS THAT 3181 02:35:55,338 --> 02:35:59,442 PROTECTING DATA SOVEREIGNTY. 3182 02:35:59,442 --> 02:36:01,545 UNDERSTANDING WHO IS THIS 3183 02:36:01,545 --> 02:36:01,778 NATION. 3184 02:36:01,778 --> 02:36:03,246 WHO ARE THE PEOPLE? 3185 02:36:03,246 --> 02:36:06,917 HOW ARE THEY IDENTIFIED AS IN 3186 02:36:06,917 --> 02:36:13,323 OUR CASE AND WHAT YOU CAN PUT 3187 02:36:13,323 --> 02:36:23,867 ANY TRIBE INTO THIS AND I THINK 3188 02:36:30,941 --> 02:36:33,577 IT'S CORE TO UNDERSTAND HOW IS 3189 02:36:33,577 --> 02:36:35,879 THUS NATION -- HOW DO THEY 3190 02:36:35,879 --> 02:36:40,750 DEFINE THEMSELVES. 3191 02:36:40,750 --> 02:36:42,986 IT'S GOING TO TAKE A LOT OF WORK 3192 02:36:42,986 --> 02:36:44,988 FROM NIH TO FIGURE OUT IT'S 3193 02:36:44,988 --> 02:36:47,657 PROBABLY NOT MAYBE IT'S JUST AN 3194 02:36:47,657 --> 02:36:49,292 UMBRELLA POLICY THAT IS 3195 02:36:49,292 --> 02:36:49,659 INCLUSIVE. 3196 02:36:49,659 --> 02:36:55,165 BECAUSE THIS IS AN ISSUE THAT 3197 02:36:55,165 --> 02:36:57,100 TRIBES DEAL WITH OUR OWN 3198 02:36:57,100 --> 02:36:59,369 CITIZENS THAT SAY I WANT TO BE 3199 02:36:59,369 --> 02:37:01,471 PART OF THAT NATION LEGALLY 3200 02:37:01,471 --> 02:37:03,540 BECAUSE I IDENTIFY AS THIS 3201 02:37:03,540 --> 02:37:08,111 PERSON BUT YET WE CREATE OUR OWN 3202 02:37:08,111 --> 02:37:11,848 RESTRICTIONS OF WHO CAN 3203 02:37:11,848 --> 02:37:17,053 IDENTIFY. 3204 02:37:17,053 --> 02:37:19,089 IT'S NOT A SIMPLE FIT BUT AN 3205 02:37:19,089 --> 02:37:24,227 IMPORTANT AREA TO PAY ATTENTION 3206 02:37:24,227 --> 02:37:26,997 TO BECAUSE IT IS SOMETHING THAT 3207 02:37:26,997 --> 02:37:28,665 WILL COME UP AND REFLECTIVE OF 3208 02:37:28,665 --> 02:37:34,070 THE PEOPLE YOU'RE WORKING WITH 3209 02:37:34,070 --> 02:37:38,208 AND WHERE YOU'RE TRYING TO AND 3210 02:37:38,208 --> 02:37:42,245 CAN BACK FIRE BUT WHEN YOU BUILD 3211 02:37:42,245 --> 02:37:43,813 RELATIONSHIPS AND WHO IDENTIFY 3212 02:37:43,813 --> 02:37:46,116 WHO WE'RE WORKING WITH WHEN WE 3213 02:37:46,116 --> 02:37:48,251 WANT TO GET OUR RESEARCH PROJECT 3214 02:37:48,251 --> 02:37:51,855 DONE THAT'S REALLY IMPORTANT. 3215 02:37:51,855 --> 02:38:02,065 THAT'S ALL. 3216 02:38:08,304 --> 02:38:09,706 >> WE SEE RESEARCHERS COME TO 3217 02:38:09,706 --> 02:38:13,743 APE COMMUNITY WITH A GRANT THEY 3218 02:38:13,743 --> 02:38:15,211 GOT AND THEY EXPECT THE 3219 02:38:15,211 --> 02:38:16,446 COMMUNITY TO BE GRATEFUL AND 3220 02:38:16,446 --> 02:38:17,313 WORK WITH THEM AND HAPPENS TO US 3221 02:38:17,313 --> 02:38:27,557 ALL THE TIME. 3222 02:38:27,891 --> 02:38:30,026 WHEN WE TALK ABOUT 3223 02:38:30,026 --> 02:38:30,794 ACCOUNTABILITY WE SEE GREAT 3224 02:38:30,794 --> 02:38:35,865 GRANT WRITERS WHO KNOW THE NIH 3225 02:38:35,865 --> 02:38:41,838 GAME AND KNOW HOW TO WRITE TO 3226 02:38:41,838 --> 02:38:43,440 THE AUDIENCE AND CAN PAINT THE 3227 02:38:43,440 --> 02:38:44,174 PICTURE THAT THEY'RE WORKING 3228 02:38:44,174 --> 02:38:45,809 WITH IN THIS COMMUNITY WHEN 3229 02:38:45,809 --> 02:38:46,776 THEY'RE REALLY NOT. 3230 02:38:46,776 --> 02:38:47,844 WHEN WE TALK ABOUT 3231 02:38:47,844 --> 02:38:50,346 ACCOUNTABILITY HOW CAN WE BUILD 3232 02:38:50,346 --> 02:38:54,718 IN POLICIES INTO OUR RFPs OR 3233 02:38:54,718 --> 02:38:56,319 WHATEVER IT IS TO MAKE SURE THAT 3234 02:38:56,319 --> 02:39:01,224 DOESN'T HAPPEN? 3235 02:39:01,224 --> 02:39:06,296 I CAN SEE VERY SEASONED 3236 02:39:06,296 --> 02:39:11,835 RESEARCHERS LOOKING LIKE THEY'RE 3237 02:39:11,835 --> 02:39:15,839 FOLLOWING POLICIES BUT THEY'RE 3238 02:39:15,839 --> 02:39:24,848 NOT AND NEEDS TO BE TRAINING SO 3239 02:39:24,848 --> 02:39:26,282 COMMUNITY MEMBERS KNOW WHAT TO 3240 02:39:26,282 --> 02:39:26,850 ASK AND ABOUT WHAT THEY CAN 3241 02:39:26,850 --> 02:39:32,989 DEMAND. 3242 02:39:32,989 --> 02:39:34,758 WHAT THEY CAN ASK FOR AND WHAT 3243 02:39:34,758 --> 02:39:36,159 WRITES THEY HAVE. 3244 02:39:36,159 --> 02:39:37,427 WHEN WE TALK ABOUT CAPACITY 3245 02:39:37,427 --> 02:39:40,663 BUILDING, THAT NEEDS TO HAPPEN 3246 02:39:40,663 --> 02:39:43,500 IN THE COMMUNITY SO COMMUNITY 3247 02:39:43,500 --> 02:39:45,101 MEMBERS AND EVERYDAY COMMUNITY 3248 02:39:45,101 --> 02:39:47,137 MEMBERS AND PARTICIPANTS WHO GET 3249 02:39:47,137 --> 02:39:48,738 APPROACHED TO DO RESEARCH NEED 3250 02:39:48,738 --> 02:39:49,939 TO BE ABLE TO ASK THE QUESTIONS 3251 02:39:49,939 --> 02:39:51,274 AND KNOW THE TERMINOLOGY. 3252 02:39:51,274 --> 02:39:53,076 WE'VE BEEN DOING THOSE THINGS. 3253 02:39:53,076 --> 02:39:55,678 WHAT IS A P.I.? 3254 02:39:55,678 --> 02:40:01,951 PEOPLE ARE LIKE IS THAT A 3255 02:40:01,951 --> 02:40:03,653 PRIVATE INVESTIGATOR? 3256 02:40:03,653 --> 02:40:04,821 THERE'S SO MUCH TRAINING AND WE 3257 02:40:04,821 --> 02:40:06,256 FOUND COMMUNITIES ARE YEARNING 3258 02:40:06,256 --> 02:40:07,290 FOR IT. 3259 02:40:07,290 --> 02:40:10,026 WE HELD THE RESEARCH SUMMIT THAT 3260 02:40:10,026 --> 02:40:14,164 WAS TALKED ABOUT AND ALL THESE 3261 02:40:14,164 --> 02:40:15,965 FEMALE POWERFUL HAWAIIAN LEADERS 3262 02:40:15,965 --> 02:40:17,267 DOING WONDERFUL THINGS IN THE 3263 02:40:17,267 --> 02:40:18,434 COMMUNITY SAY THEY WANT TO DO 3264 02:40:18,434 --> 02:40:19,836 THIS BUT THERE NEEDS TO BE 3265 02:40:19,836 --> 02:40:22,739 TRAINING TO ENGAGE IN RESEARCH 3266 02:40:22,739 --> 02:40:23,740 IN MEANINGFUL WAYS. 3267 02:40:23,740 --> 02:40:30,246 ON THE FLIP SIDE, RESEARCHERS 3268 02:40:30,246 --> 02:40:31,614 NEED TO BE TRAINED TO WRITE THE 3269 02:40:31,614 --> 02:40:33,049 GRANT AND MAYBE GET A LETTER OF 3270 02:40:33,049 --> 02:40:36,219 SUPPORT AND GET THE GRANT AND 3271 02:40:36,219 --> 02:40:38,388 COME TO THE COMMUNITY AND NOT 3272 02:40:38,388 --> 02:40:39,155 LEAVE ANGRY BECAUSE THEY THINK 3273 02:40:39,155 --> 02:40:40,390 NATIVE COMMUNITIES DON'T WANT TO 3274 02:40:40,390 --> 02:40:41,057 DO RESEARCH. 3275 02:40:41,057 --> 02:40:42,992 THEY DON'T WANT TO DO SCIENCE. 3276 02:40:42,992 --> 02:40:46,496 SO WE SEE THAT TIME AND TIME 3277 02:40:46,496 --> 02:40:54,237 AGAIN AND IT'S REALLY SOUL 3278 02:40:54,237 --> 02:40:54,671 SUCKING. 3279 02:40:54,671 --> 02:40:57,040 EACH L I'M THINKING WHAT NEEDS 3280 02:40:57,040 --> 02:40:59,843 TO HAPPEN SO THE POLICIES CAN BE 3281 02:40:59,843 --> 02:41:02,111 ACTUALIZED IN A MEANINGFUL WAY 3282 02:41:02,111 --> 02:41:03,079 THAT'S POSITIVE. 3283 02:41:03,079 --> 02:41:07,851 I STE IF WE JUST IMPLEMENT THE 3284 02:41:07,851 --> 02:41:13,289 POLICY WITHOUT THE WIDER 3285 02:41:13,289 --> 02:41:15,825 STRUCTURE OF GRANT ENTERPRISE 3286 02:41:15,825 --> 02:41:21,397 THERE WILL BE PEOPLE WHO FIND 3287 02:41:21,397 --> 02:41:24,601 LOOPHOLES AND AND PERPETUATE 3288 02:41:24,601 --> 02:41:29,505 EXPLOITIVE RESEARCH. 3289 02:41:29,505 --> 02:41:35,845 >> I THINK I WANT TO PIGGYBACK 3290 02:41:35,845 --> 02:41:38,514 OFF WHAT WAS SAID. 3291 02:41:38,514 --> 02:41:45,788 HAVING FLEXIBILITY WITHIN THE 3292 02:41:45,788 --> 02:41:49,325 RESEARCH REALM. 3293 02:41:49,325 --> 02:41:51,561 I'M FROM ALASKA BUT WIN THING I 3294 02:41:51,561 --> 02:41:57,600 WANT TO BRING ATTENTION TO IS 3295 02:41:57,600 --> 02:42:07,677 MANY TRIBES HAVE LOST MEMBERS. 3296 02:42:07,677 --> 02:42:09,178 THEY ADOPTED THE CULTURAL NORMS 3297 02:42:09,178 --> 02:42:14,417 AS THEY'RE OWN SO YOU CAN'T GO 3298 02:42:14,417 --> 02:42:19,422 IN AND SAY THEY BELONG TO THE 3299 02:42:19,422 --> 02:42:20,957 TRIBE BUT MAYBE THEY WERE 3300 02:42:20,957 --> 02:42:22,325 ADOPTED INTO THE NAVAJO TRIBE 3301 02:42:22,325 --> 02:42:28,064 AND THAT'S THEIR CULTURAL NORM. 3302 02:42:28,064 --> 02:42:32,268 THAT'S THEIR NEW WORLD VIEW AND 3303 02:42:32,268 --> 02:42:33,870 I WOULD HATE FOR SOME FOLKS TO 3304 02:42:33,870 --> 02:42:36,940 GET PIGEON HOLED INTO SOMETHING 3305 02:42:36,940 --> 02:42:38,641 SPECIFIC. 3306 02:42:38,641 --> 02:42:41,144 HAVING SOME FLEXIBILITY, HAVING 3307 02:42:41,144 --> 02:42:41,744 SOME ACCOUNTABILITY. 3308 02:42:41,744 --> 02:42:42,946 MAYBE SOME PEOPLE WERE ADOPTED 3309 02:42:42,946 --> 02:42:44,614 OUTSIDE THE TRIBE AND HAVE NO 3310 02:42:44,614 --> 02:42:47,850 IDEA THEY EVEN BELONG TO A 3311 02:42:47,850 --> 02:42:48,051 TRIBE. 3312 02:42:48,051 --> 02:42:51,521 MAYBE THAT'S THEIR REALITY. 3313 02:42:51,521 --> 02:42:54,457 AND HAVE FLEXIBILITY WITHIN THE 3314 02:42:54,457 --> 02:42:58,628 POLICY AS WELL. 3315 02:42:58,628 --> 02:43:00,063 AND GIVING THEM THE SPACE IT 3316 02:43:00,063 --> 02:43:04,701 EXPLORE WHERE THEY CAME FROM AND 3317 02:43:04,701 --> 02:43:06,035 MAYBE RESEARCH CAN HELP THEM 3318 02:43:06,035 --> 02:43:07,837 MAKE THAT CONNECTION BACK TO 3319 02:43:07,837 --> 02:43:18,047 THEIR PLACE. 3320 02:43:18,314 --> 02:43:21,484 >> I'LL SPEAK ABOUT THE 3321 02:43:21,484 --> 02:43:22,452 JURISDICTION QUESTION. 3322 02:43:22,452 --> 02:43:23,486 IN THINKING OF COMPILING 3323 02:43:23,486 --> 02:43:27,790 THOUGHTS AHEAD OF TIME ON THE 3324 02:43:27,790 --> 02:43:29,792 PANEL TOPIC, BY THE WAY, I'M NOT 3325 02:43:29,792 --> 02:43:31,260 MARRIED TO ANY OF THESE. 3326 02:43:31,260 --> 02:43:33,363 THESE ARE ACTIVELY GOING THROUGH 3327 02:43:33,363 --> 02:43:37,600 MY HEAD I'LL THINK ONE THING AND 3328 02:43:37,600 --> 02:43:45,208 THEN ARGUE WITH MYSELF BUT THE 3329 02:43:45,208 --> 02:43:54,250 CONCEPT OF JURISDICTION IS A 3330 02:43:54,250 --> 02:43:58,821 LIMITING ONE AND A MANDATE TO 3331 02:43:58,821 --> 02:44:02,291 CONSULT WITH DIFFERENT 3332 02:44:02,291 --> 02:44:03,926 ORGANIZATIONS, IN THINKING ABOUT 3333 02:44:03,926 --> 02:44:05,762 GOVERNMENT TO GOVERNMENT 3334 02:44:05,762 --> 02:44:06,963 RELATIONSHIPS, JURISDICTION IS A 3335 02:44:06,963 --> 02:44:17,340 VERY LEGALISTIC TERM. 3336 02:44:22,979 --> 02:44:25,715 THERE'S NOT MUCH DAYLIGHT AND BY 3337 02:44:25,715 --> 02:44:31,354 DEFINITION IT HAS TO FIND THE 3338 02:44:31,354 --> 02:44:32,088 DAYLIGHT. 3339 02:44:32,088 --> 02:44:34,690 JURISDICTION FROM A LEGALISTIC 3340 02:44:34,690 --> 02:44:35,858 STANDPOINT OR SERVICE AREA, 3341 02:44:35,858 --> 02:44:38,061 HOWEVER YOU'RE DEFINING THIS, 3342 02:44:38,061 --> 02:44:39,562 DOES NOT ENCOMPASS THESE THINGS 3343 02:44:39,562 --> 02:44:41,664 THAT WE'RE TALKING ABOUT THAT 3344 02:44:41,664 --> 02:44:43,032 OUGHT TO BE PRESENT IN THIS 3345 02:44:43,032 --> 02:44:46,269 POLICY AND SO I DON'T KNOW WHAT 3346 02:44:46,269 --> 02:44:46,569 THAT MEANS. 3347 02:44:46,569 --> 02:44:48,137 GOOD LUCK FOR YOU GUYS AS YOU 3348 02:44:48,137 --> 02:44:49,539 DRAFT THIS. 3349 02:44:49,539 --> 02:44:52,608 I'M NOT SURE JURISDICTION 3350 02:44:52,608 --> 02:44:58,848 CAPTURES OR MAYBE IT JUST 3351 02:44:58,848 --> 02:45:03,753 WARRANTS A CERTAIN KIND OF 3352 02:45:03,753 --> 02:45:04,554 CLARIFICATION BECAUSE BY THE 3353 02:45:04,554 --> 02:45:06,289 PERSPECTIVES IN THE ROOM IT'S 3354 02:45:06,289 --> 02:45:08,591 BIGGER THAN THAT JURISDICTION 3355 02:45:08,591 --> 02:45:12,895 TERM AND THE FEDERAL GOVERNMENT 3356 02:45:12,895 --> 02:45:14,397 TO GOVERNMENT OBLIGATION TO 3357 02:45:14,397 --> 02:45:16,466 TRIBES BECAUSE THAT DOESN'T 3358 02:45:16,466 --> 02:45:17,533 ENCOMPASS THE THINGS THAT WE'VE 3359 02:45:17,533 --> 02:45:18,067 ALREADY HEARD. 3360 02:45:18,067 --> 02:45:21,971 SO I DON'T KNOW WHAT THAT MEANS 3361 02:45:21,971 --> 02:45:25,141 FOR YOU GUYS BUT IT STRIKES ME 3362 02:45:25,141 --> 02:45:26,309 AS SOMETHING MAYBE JURISDICTION 3363 02:45:26,309 --> 02:45:27,844 NEEDS TO FLUSH OUT A LITTLE BIT 3364 02:45:27,844 --> 02:45:37,353 MORE. 3365 02:45:37,353 --> 02:45:39,655 WHILE I HAVE THE MIKE I WANT TO 3366 02:45:39,655 --> 02:45:42,291 BRING UP BECAUSE IN THINKING 3367 02:45:42,291 --> 02:45:44,760 ABOUT JURISDICTION AND THE URBAN 3368 02:45:44,760 --> 02:45:46,963 ISSUE, THE URBAN QUESTION, THIS 3369 02:45:46,963 --> 02:45:48,331 IS SOMETHING I KNOW A LOT OF 3370 02:45:48,331 --> 02:45:49,565 PEOPLE HAVE BEEN TRYING TO 3371 02:45:49,565 --> 02:45:52,301 TACKLE AND SARA, I DON'T MEAN TO 3372 02:45:52,301 --> 02:45:53,769 CALL YOU OFF GUARD OR ANYTHING 3373 02:45:53,769 --> 02:45:56,205 LIKE THAT BUT WHEN YOU WALKED IN 3374 02:45:56,205 --> 02:45:59,742 THE ROOM IT DID REMIND ME THAT 3375 02:45:59,742 --> 02:46:01,444 THERE HAVE BEEN EFFORTS OVER THE 3376 02:46:01,444 --> 02:46:03,379 PAST FEW YEARS TO DRAFT SOME 3377 02:46:03,379 --> 02:46:05,581 GUIDANCE ON THE ISSUE OF TRIBAL 3378 02:46:05,581 --> 02:46:07,049 DATA IN URBAN AREAS. 3379 02:46:07,049 --> 02:46:09,519 I DON'T KNOW WHERE THAT STANDS. 3380 02:46:09,519 --> 02:46:15,424 I KNOW MATT'S QUESTIONS ABOUT 3381 02:46:15,424 --> 02:46:17,326 URBAN POLICIES, THIS ONE ABOVE 3382 02:46:17,326 --> 02:46:19,829 THAT I DON'T KNOW WHERE THAT 3383 02:46:19,829 --> 02:46:21,998 EFFORT STANDS IN RELATION TO 3384 02:46:21,998 --> 02:46:23,065 THIS ONE. 3385 02:46:23,065 --> 02:46:25,801 IT WOULD BE GREAT TO GET AN 3386 02:46:25,801 --> 02:46:28,237 UPDATE ON AND LET PEOPLE KNOW 3387 02:46:28,237 --> 02:46:29,772 WHERE THE PROCESS WAS AND WHERE 3388 02:46:29,772 --> 02:46:30,740 IT STANDS NOW OR MAYBE SOME TIME 3389 02:46:30,740 --> 02:46:31,007 TOMORROW. 3390 02:46:31,007 --> 02:46:41,184 THANK YOU. 3391 02:46:42,351 --> 02:46:44,987 WE'RE EXPECTING TO POST THE DATA 3392 02:46:44,987 --> 02:46:45,288 SOVEREIGNTY. 3393 02:46:45,288 --> 02:46:53,162 WE WANT TO GET ID IDENTIFIED 3394 02:46:53,162 --> 02:46:56,532 FIRST AND THEN ALIGNED. 3395 02:46:56,532 --> 02:47:07,043 IT'S STILL A WORKING DOCUMENT. 3396 02:47:21,924 --> 02:47:22,124 [OFF-MIC] 3397 02:47:22,124 --> 02:47:22,491 . 3398 02:47:22,491 --> 02:47:24,894 >> I WANTED TO OPEN IT UP FOR 3399 02:47:24,894 --> 02:47:26,329 THEIR GROUP OR ANY CONVERSATION 3400 02:47:26,329 --> 02:47:27,830 ABOUT THINGS SHARED SO FAR OR 3401 02:47:27,830 --> 02:47:29,832 THINGS PEOPLE WANT TO ADD OR ASK 3402 02:47:29,832 --> 02:47:34,103 THE PANELISTS THEMSELVES. 3403 02:47:34,103 --> 02:47:35,838 JUST OPEN IT UP FOR THE NEXT FEW 3404 02:47:35,838 --> 02:47:46,082 MINUTES HERE. 3405 02:47:46,849 --> 02:47:49,952 >> I THINK PART OF THE CHALLENGE 3406 02:47:49,952 --> 02:47:52,922 OR BASIS OF THE CHALLENGE HAS 3407 02:47:52,922 --> 02:47:55,157 BEEN THE HALLMARK OF RESEARCH 3408 02:47:55,157 --> 02:47:58,394 SUCCESS AT LEAST IN THIS COUNTRY 3409 02:47:58,394 --> 02:48:00,796 OVER THE PAST 150 YEARS AND 3410 02:48:00,796 --> 02:48:01,430 THAT'S INVESTIGATOR ORIGINATED 3411 02:48:01,430 --> 02:48:05,334 RESEARCH. 3412 02:48:05,334 --> 02:48:07,436 OF COURSE WHAT ARE THE MOTIVES 3413 02:48:07,436 --> 02:48:08,571 AND MOTIVATIONS OF INVESTIGATORS 3414 02:48:08,571 --> 02:48:09,438 TO DO THAT. 3415 02:48:09,438 --> 02:48:13,909 WE HAVEN'T REALLY BEEN ABLE TO 3416 02:48:13,909 --> 02:48:14,176 PRESCRIBE. 3417 02:48:14,176 --> 02:48:15,678 AND THERE'S CERTAINLY BEEN A LOT 3418 02:48:15,678 --> 02:48:19,448 OF MISUSE OF THAT. 3419 02:48:19,448 --> 02:48:25,621 THAT'S BEEN THE STRONGEST ACTOR 3420 02:48:25,621 --> 02:48:36,165 OF RESEARCH AND WE HAVE TO THINK 3421 02:48:38,467 --> 02:48:41,137 WHETHER IT'S USEFUL OR 3422 02:48:41,137 --> 02:48:42,571 SUFFICIENT OR PROPER FOR THIS 3423 02:48:42,571 --> 02:48:43,673 KIND OF RESEARCH. 3424 02:48:43,673 --> 02:48:47,276 I HADN'T THOUGHT ABOUT IT ENOUGH 3425 02:48:47,276 --> 02:48:50,713 TO OFFER ANY RECOMMENDATION 3426 02:48:50,713 --> 02:48:58,087 EXCEPT I SEE THE TENSION BETWEEN 3427 02:48:58,087 --> 02:49:01,157 INVESTIGATOR-ORIGINATED RESEARCH 3428 02:49:01,157 --> 02:49:03,793 AND LESS THAN HALF INVESTIGATORS 3429 02:49:03,793 --> 02:49:04,627 BEING NATIVE. 3430 02:49:04,627 --> 02:49:06,629 THE NUMBER OF 3431 02:49:06,629 --> 02:49:07,630 INVESTIGATOR-ORIGINATED RESEARCH 3432 02:49:07,630 --> 02:49:13,302 IN THIS AREA IS GOING TO BE 3433 02:49:13,302 --> 02:49:13,569 MINUSCULE. 3434 02:49:13,569 --> 02:49:16,672 SO WE WANT HEALTH RESEARCH TO 3435 02:49:16,672 --> 02:49:19,875 PROCEED, I THINK WE NEED TO 3436 02:49:19,875 --> 02:49:22,645 THINK AND RETHINK THE MODEL. 3437 02:49:22,645 --> 02:49:27,850 WE CAN THINK WHAT'S WRONG WITH 3438 02:49:27,850 --> 02:49:30,052 ALTERNATIVE MODELS. 3439 02:49:30,052 --> 02:49:32,555 I THINK THEREIN LIES PART OF THE 3440 02:49:32,555 --> 02:49:33,856 PROBLEM IS WHAT OUR BASIC 3441 02:49:33,856 --> 02:49:36,292 STRUCTURE HAS BEEN. 3442 02:49:36,292 --> 02:49:42,732 WE CAN TRY TRAINING FOR THE NEXT 3443 02:49:42,732 --> 02:49:45,801 GENERATION AND TRY TO HIGHLIGHT 3444 02:49:45,801 --> 02:49:48,371 THE TRIBES' RESPONSIBILITY. 3445 02:49:48,371 --> 02:49:49,772 THAT'S ALTERNATIVE WAYS OF 3446 02:49:49,772 --> 02:49:51,307 THINKING OF SOLVING THE PROBLEM 3447 02:49:51,307 --> 02:49:53,142 BUT THERE'S RELATIVELY SMALL 3448 02:49:53,142 --> 02:49:55,811 APPROACHES ON THE BIG SCALE TO 3449 02:49:55,811 --> 02:50:00,950 THE OVER ALL BUT I DO THINK IT'S 3450 02:50:00,950 --> 02:50:06,422 IMPORTANT TO SOMETIMES PAUSE AND 3451 02:50:06,422 --> 02:50:10,459 REFLECT ON OUR MODEL OF RESEARCH 3452 02:50:10,459 --> 02:50:15,831 AND THE MOTIVATORS INVOLVE. 3453 02:50:15,831 --> 02:50:26,041 -- INVOLVED. 3454 02:50:27,209 --> 02:50:32,748 >> THANK YOU FOR YOUR RESPONSES 3455 02:50:32,748 --> 02:50:43,292 WHICH IS AND OVERALL IN SCIENCE 3456 02:50:53,936 --> 02:50:55,538 THERE'S A CENTRALIZATION OF 3457 02:50:55,538 --> 02:50:58,107 POWER AND THOSE WHO CAN VOTE. 3458 02:50:58,107 --> 02:51:01,177 WE'RE NOT ACTUALLY SERVING THOSE 3459 02:51:01,177 --> 02:51:02,511 WHO CANNOT AND NOT ACTUALLY 3460 02:51:02,511 --> 02:51:03,345 LISTENING TO THOSE WHO DON'T 3461 02:51:03,345 --> 02:51:05,147 HAVE A VOICE. 3462 02:51:05,147 --> 02:51:06,282 HOW CAN WE THINK ABOUT 3463 02:51:06,282 --> 02:51:10,419 JURISDICTION IN A MORE EXPENSIVE 3464 02:51:10,419 --> 02:51:12,455 WAY THAT IS LOOKING AT THOSE 3465 02:51:12,455 --> 02:51:18,294 IMPACTED BY THE HEALTH TOPICS 3466 02:51:18,294 --> 02:51:20,162 WE'RE RESEARCHING AND I KNOW 3467 02:51:20,162 --> 02:51:22,965 THIS IS UNFAIR BUT SOMETHING I 3468 02:51:22,965 --> 02:51:27,803 STRUGGLE WITH HOW DO WE NOT 3469 02:51:27,803 --> 02:51:30,306 REPLICATE SYSTEMS OF 3470 02:51:30,306 --> 02:51:31,807 COLONIZATION INDOCTRINATED TO 3471 02:51:31,807 --> 02:51:33,776 REBUILD FOR OTHER ENTITIES. 3472 02:51:33,776 --> 02:51:35,845 I DON'T KNOW EXACTLY HOW TO DO 3473 02:51:35,845 --> 02:51:37,246 THAT MYSELF BUT YOU THINK IT'S 3474 02:51:37,246 --> 02:51:37,947 AN IMPORTANT QUESTION AND 3475 02:51:37,947 --> 02:51:41,550 QUESTIONING THE FOUNDATIONS OF 3476 02:51:41,550 --> 02:51:43,486 THIS QUESTION LIKE WHEN WE THINK 3477 02:51:43,486 --> 02:51:45,721 ABOUT THE WAYS THE LEGAL SYSTEM 3478 02:51:45,721 --> 02:51:46,455 HAS HARMED OUR PEOPLE. 3479 02:51:46,455 --> 02:51:52,428 JUST A GENERAL QUESTION. 3480 02:51:52,428 --> 02:51:53,662 SO MANY GREAT QUESTIONS AND 3481 02:51:53,662 --> 02:51:54,096 CONSIDERATIONS. 3482 02:51:54,096 --> 02:51:55,464 I WANT TO ADD TO WHAT CLIFF 3483 02:51:55,464 --> 02:51:56,265 SAID. 3484 02:51:56,265 --> 02:51:57,633 THANK YOU FOR BRINGING THEM UP 3485 02:51:57,633 --> 02:51:58,834 BECAUSE I THINK IT'S SUPER 3486 02:51:58,834 --> 02:51:59,802 IMPORTANT IN OUR CONVERSATION 3487 02:51:59,802 --> 02:52:10,346 LIKE THE ORIGINS OF HOW WE SEE 3488 02:52:18,354 --> 02:52:23,359 AND I FELT THIS WAS A MODALITY 3489 02:52:23,359 --> 02:52:24,827 TO GIVE BACK IT MY COMMUNITY AND 3490 02:52:24,827 --> 02:52:26,262 ADDRESS THE ISSUES WE SEE IN 3491 02:52:26,262 --> 02:52:26,762 HEALTH DISPARITIES. 3492 02:52:26,762 --> 02:52:30,332 FOR ME, HAVING A Ph.D. WASN'T AN 3493 02:52:30,332 --> 02:52:31,734 INDIVIDUALISTIC DECISION IT WAS 3494 02:52:31,734 --> 02:52:32,568 A COMMUNAL DECISION. 3495 02:52:32,568 --> 02:52:35,671 I THINK HOW WE TREAT OUR DATA 3496 02:52:35,671 --> 02:52:39,842 TOO IT'S NOT THAT INDIVIDUALS 3497 02:52:39,842 --> 02:52:41,944 WHO PARTICIPATE IN RESEARCH 3498 02:52:41,944 --> 02:52:44,146 STUDIES AND DATA GOES INTO THIS 3499 02:52:44,146 --> 02:52:45,180 SPACE. 3500 02:52:45,180 --> 02:52:47,316 I THINK OUR COMMUNITY VIEWS 3501 02:52:47,316 --> 02:52:49,752 ESPECIALLY IF IT'S A NATIVE 3502 02:52:49,752 --> 02:52:50,886 HAWAIIAN DATA POINT THAT'S ALSO 3503 02:52:50,886 --> 02:52:53,556 PART OF THEIR STORY BECAUSE 3504 02:52:53,556 --> 02:52:54,790 WE'RE CONNECTED. 3505 02:52:54,790 --> 02:52:57,059 SO IT'S REALLY DIFFICULT BECAUSE 3506 02:52:57,059 --> 02:52:58,794 THE STRUCTURE HAS BEEN SET UP 3507 02:52:58,794 --> 02:53:00,396 FROM THE VERY BEGINNING ACADEMIC 3508 02:53:00,396 --> 02:53:04,767 SORT OF ASPECT IS VERY 3509 02:53:04,767 --> 02:53:05,467 INDIVIDUALISTIC AS WELL AS THE 3510 02:53:05,467 --> 02:53:07,570 OTHER SIDE FOR THE RESEARCH 3511 02:53:07,570 --> 02:53:08,971 ITSELF FOR THE IRB THAT'S 3512 02:53:08,971 --> 02:53:13,008 STRUCTURED TO PROTECT INDIVIDUAL 3513 02:53:13,008 --> 02:53:14,343 RIGHTS AND INFORMATION AND THE 3514 02:53:14,343 --> 02:53:15,544 LOGISTICAL THINGS ABOUT THAT 3515 02:53:15,544 --> 02:53:15,945 TOO. 3516 02:53:15,945 --> 02:53:19,081 IT'S NOT NECESSARILY COMMUNITY 3517 02:53:19,081 --> 02:53:21,550 CENTERED OR COMES FROM A 3518 02:53:21,550 --> 02:53:23,285 FRAMEWORK OF POPULATIONS THAT 3519 02:53:23,285 --> 02:53:30,459 ARE MORE ORIENTED TOWARDS THE 3520 02:53:30,459 --> 02:53:31,827 HOLISTIC RATHER THAN 3521 02:53:31,827 --> 02:53:33,329 INDIVIDUALISTIC AND CAN CREATE 3522 02:53:33,329 --> 02:53:35,831 TENSIONS IN POLICIES AND HOW 3523 02:53:35,831 --> 02:53:41,904 THAT LOOKS IN THE COMMUNITY. 3524 02:53:41,904 --> 02:53:44,573 I'LL TRY TO END A LITTLE BIT ON 3525 02:53:44,573 --> 02:53:45,307 YOUR QUESTION. 3526 02:53:45,307 --> 02:53:50,279 WE ARE NOT RECOGNIZED AS A 3527 02:53:50,279 --> 02:53:51,680 FEDERALLY INDEPENDENT NATION BUT 3528 02:53:51,680 --> 02:53:55,851 NATIVE HAWAIIANS CONSIDER 3529 02:53:55,851 --> 02:53:59,221 THEMSELVES AS NATIVE HAWAIIAN 3530 02:53:59,221 --> 02:54:02,391 ORIGIN STUDIES CONNECTED TO OUR 3531 02:54:02,391 --> 02:54:02,658 COMMUNITY. 3532 02:54:02,658 --> 02:54:08,564 THE WAY I'VE APPROACHED IT IN MY 3533 02:54:08,564 --> 02:54:10,666 WORLD IS WE COLLECT INFORMATION 3534 02:54:10,666 --> 02:54:12,301 FROM INDIVIDUALS AND ENGAGED 3535 02:54:12,301 --> 02:54:14,903 THEM IN THE PROCESS AND THE 3536 02:54:14,903 --> 02:54:16,505 ENTIRE FRAMEWORK OF THE STUDY IS 3537 02:54:16,505 --> 02:54:17,606 AN INDIGENOUS PERSPECTIVE TOO. 3538 02:54:17,606 --> 02:54:21,577 I THINK ABOUT THE INTERACTIONS 3539 02:54:21,577 --> 02:54:22,645 AND THEIR UNDERLYING 3540 02:54:22,645 --> 02:54:23,879 CONTRIBUTING MECHANISMS FOR 3541 02:54:23,879 --> 02:54:26,148 DISEASE FOR EXAMPLE AND THAT 3542 02:54:26,148 --> 02:54:27,316 COMES FROM A VERY INDIGENOUS 3543 02:54:27,316 --> 02:54:27,883 PERSPECTIVE WHERE A LOT OF 3544 02:54:27,883 --> 02:54:36,291 THINGS ARE CONNECTED. 3545 02:54:36,291 --> 02:54:39,194 OUR HAWAIIAN WORLD OF HEALTH 3546 02:54:39,194 --> 02:54:41,430 ENCAPSULATES THE DEVELOPMENT AND 3547 02:54:41,430 --> 02:54:44,099 HOW THAT RELATES TO GENERATIONAL 3548 02:54:44,099 --> 02:54:46,835 AND INTERGENERATIONAL HEALTH 3549 02:54:46,835 --> 02:54:47,403 DEVELOPMENTS THROUGH LIFE. 3550 02:54:47,403 --> 02:54:49,004 THAT'S THE STARTING POINT FOR US 3551 02:54:49,004 --> 02:54:50,439 TO ADDRESS SOME QUESTIONS FOR 3552 02:54:50,439 --> 02:54:52,207 OURSELVES WHAT ARE THE ORIGINS 3553 02:54:52,207 --> 02:54:54,309 OF THE DISEASES WE SEE THAT ARE 3554 02:54:54,309 --> 02:54:57,179 HIGHLY PREVALENT IN POPULATIONS 3555 02:54:57,179 --> 02:54:58,380 AND HOW COMMUNITIES USE 3556 02:54:58,380 --> 02:54:59,415 INDIGENOUS KNOWLEDGE AND 3557 02:54:59,415 --> 02:55:00,649 CULTURAL PRACTICES TO REVERSE 3558 02:55:00,649 --> 02:55:03,652 THE PRACTICE AND THE HIGH RATES 3559 02:55:03,652 --> 02:55:06,355 OF CHRONIC CONDITIONS AND REDUCE 3560 02:55:06,355 --> 02:55:09,091 THE RISK FOR MORTALITY TOOLS AND 3561 02:55:09,091 --> 02:55:10,359 CONDITIONS AND OTHER QUESTIONS 3562 02:55:10,359 --> 02:55:13,662 THAT WE ASK BUT IT COMES FROM 3563 02:55:13,662 --> 02:55:17,666 THAT BASIS WHERE WE CAN USE OUR 3564 02:55:17,666 --> 02:55:18,600 OWN FRAMEWORK TO UNDERSTAND THAT 3565 02:55:18,600 --> 02:55:21,870 MORE DEEPLY BUT USING RESEARCH 3566 02:55:21,870 --> 02:55:22,404 AS TOOLS. 3567 02:55:22,404 --> 02:55:25,107 USING METHODOLOGIES AND 3568 02:55:25,107 --> 02:55:26,775 STRATEGIES THE TECHNOLOGY AS 3569 02:55:26,775 --> 02:55:28,444 TOOLS TO INVESTIGATE THAT ALONG 3570 02:55:28,444 --> 02:55:29,745 SIDE OUR COMMUNITY WITH THAT 3571 02:55:29,745 --> 02:55:31,213 CULTURAL KNOWLEDGE INCORPORATED 3572 02:55:31,213 --> 02:55:32,481 AS PART OF THE PROCESS OF 3573 02:55:32,481 --> 02:55:32,948 RESEARCH. 3574 02:55:32,948 --> 02:55:35,551 THAT'S ONE THING I THINK 3575 02:55:35,551 --> 02:55:38,554 HIGHLIGHTS THE INNOVATION IN OUR 3576 02:55:38,554 --> 02:55:40,589 COMMUNITY AND DRAWING THAT OUT 3577 02:55:40,589 --> 02:55:46,195 AND AT THE INDIVIDUAL LEVEL 3578 02:55:46,195 --> 02:55:49,798 WHERE WE COLLECT ANY QUESTIONS, 3579 02:55:49,798 --> 02:55:54,269 SURVEYS OR BIO SPECIMENS OR DO 3580 02:55:54,269 --> 02:55:58,073 GENETIC OR MICROBIOME OR OMICS 3581 02:55:58,073 --> 02:55:59,041 RESEARCH WE PROVIDE INFORMATION 3582 02:55:59,041 --> 02:56:00,976 BACK TO EACH PARTICIPANT AS PART 3583 02:56:00,976 --> 02:56:03,011 OF THE STUDY BEFORE PROCESSING 3584 02:56:03,011 --> 02:56:04,246 THE WORK AND CREATED SUPPORT TO 3585 02:56:04,246 --> 02:56:07,349 HELP MANAGE THE DATA AND WHERE 3586 02:56:07,349 --> 02:56:09,852 IT GOES AND HOW IT LIVES. 3587 02:56:09,852 --> 02:56:12,321 SOME ANONYMIZED AGGREGATED DATA 3588 02:56:12,321 --> 02:56:14,123 IS INDIVIDUAL TO INDIVIDUALS AND 3589 02:56:14,123 --> 02:56:15,824 COMMUNITY MEMBERS WHERE THE DATA 3590 02:56:15,824 --> 02:56:18,527 COMES FROM AND LIVES IN A 3591 02:56:18,527 --> 02:56:19,895 SPACE -- WE'LL TALK ABOUT THIS 3592 02:56:19,895 --> 02:56:22,531 IN THE NEXT PANELS ABOUT DATA 3593 02:56:22,531 --> 02:56:27,936 OWNERSHIP AND HOW THIS MIGHT BE 3594 02:56:27,936 --> 02:56:28,337 UTILIZED. 3595 02:56:28,337 --> 02:56:35,644 I THINK OUR COMMUNITY INTEGRATES 3596 02:56:35,644 --> 02:56:37,246 THAT WITH THEIR STORY AND THE 3597 02:56:37,246 --> 02:56:38,514 WORK THEY DO. 3598 02:56:38,514 --> 02:56:42,284 I WORK WITH A LOT OF COMMUNITY 3599 02:56:42,284 --> 02:56:45,554 ORGANIZATIONS AND PRACTICES 3600 02:56:45,554 --> 02:56:46,588 DEVELOPING INDIGENOUS CULTURAL 3601 02:56:46,588 --> 02:56:57,099 PRACTICES SELF-SUSTAINING AND 3602 02:56:59,902 --> 02:57:09,945 ECOLOGICAL PROGRAMS AND HOW THEY 3603 02:57:09,945 --> 02:57:11,847 CONNECT TO QUESTIONS IMMEDIATE 3604 02:57:11,847 --> 02:57:14,116 OF THEIR RESEARCHERS QUESTIONS. 3605 02:57:14,116 --> 02:57:15,851 THEY UNDERSTAND THAT'S A GREAT 3606 02:57:15,851 --> 02:57:18,287 RESOURCE FOR THEM TO UTILIZE TO 3607 02:57:18,287 --> 02:57:19,688 HELP WITH ADDRESSING A LOT OF 3608 02:57:19,688 --> 02:57:21,957 THE SOCIAL ISSUES AND OTHER 3609 02:57:21,957 --> 02:57:22,825 ONGOING CONCERNS, ENVIRONMENTAL 3610 02:57:22,825 --> 02:57:24,927 ISSUES THEY MAY BE CONCERNED 3611 02:57:24,927 --> 02:57:26,695 ABOUT IN ADDITION TO THE HEALTH 3612 02:57:26,695 --> 02:57:28,463 INFORMATION WE'RE COLLECTING. 3613 02:57:28,463 --> 02:57:30,766 IN THAT SENSE THERE'S 3614 02:57:30,766 --> 02:57:32,267 RECIPROCITY AROUND HOW WE ENGAGE 3615 02:57:32,267 --> 02:57:34,770 THE COMMUNITY IN OUR RESEARCH 3616 02:57:34,770 --> 02:57:35,838 AND INVOLVE NOT JUST THE 3617 02:57:35,838 --> 02:57:37,973 INFORMATION WE'RE COLLECTING BUT 3618 02:57:37,973 --> 02:57:40,175 ALSO SHARING BACK AND HOW IT'S 3619 02:57:40,175 --> 02:57:42,077 FRAMED IN THIS HOLISTIC 3620 02:57:42,077 --> 02:57:42,344 APPROACH. 3621 02:57:42,344 --> 02:57:45,013 SO I THINK IT CAN BE DONE. 3622 02:57:45,013 --> 02:57:46,315 THERE ARE EXAMPLES HOW THAT CAN 3623 02:57:46,315 --> 02:57:50,018 BE DONE IN A WAY THAT RECOGNIZES 3624 02:57:50,018 --> 02:57:51,787 EVEN IF WE'RE NOT FEDERALLY 3625 02:57:51,787 --> 02:58:02,331 RECOGNIZED AS A SOVEREIGN ENTITY 3626 02:58:09,538 --> 02:58:19,815 TO THE NEXT LEVEL. 3627 02:58:19,815 --> 02:58:20,949 AND RESEARCHERS IN DIFFERENT 3628 02:58:20,949 --> 02:58:23,819 FIELD BUT CAN SEE THE VALUE OF 3629 02:58:23,819 --> 02:58:26,288 THAT KIND OF ENGAGEMENT. 3630 02:58:26,288 --> 02:58:29,791 EVEN IF THEY'RE GOING TO 3631 02:58:29,791 --> 02:58:31,293 DIFFERENT DISCIPLINARY AREA IT 3632 02:58:31,293 --> 02:58:32,761 MAY NOT LOOK LIKE AN EXISTING 3633 02:58:32,761 --> 02:58:38,533 MODEL OF AN INDIGENOUS FORM OF 3634 02:58:38,533 --> 02:58:41,603 THAT DISCIPLINARY AREA AND LOU 3635 02:58:41,603 --> 02:58:44,573 THEY ADOPT THAT TO THE COMMUNITY 3636 02:58:44,573 --> 02:58:47,042 THERE'S A ROLE THERE AND CAN SEE 3637 02:58:47,042 --> 02:58:49,711 HOW IT CAN PLAY OUT IN GENERAL 3638 02:58:49,711 --> 02:58:52,614 DATA SOVEREIGNTY AND HOW THAT 3639 02:58:52,614 --> 02:58:54,416 WORKS IN ADDRESSING THESE ISSUES 3640 02:58:54,416 --> 02:58:55,717 IN THEIR COMMUNITY. 3641 02:58:55,717 --> 02:58:57,953 >> WELL, THANK YOU GUYS. 3642 02:58:57,953 --> 02:59:00,355 I WANTED TO EXPRESS MY GRATITUDE 3643 02:59:00,355 --> 02:59:01,623 FOR EVERYTHING YOU'VE SHARED BUT 3644 02:59:01,623 --> 02:59:02,891 I KNOW THERE'LL BE MORE THINGS 3645 02:59:02,891 --> 02:59:04,493 AND OPPORTUNITIES TO SHARE AS WE 3646 02:59:04,493 --> 02:59:06,194 GO ON THROUGH THE DAY. 3647 02:59:06,194 --> 02:59:07,963 AND SO WANT IT GIVE YOU GUYS A 3648 02:59:07,963 --> 02:59:12,901 BIG THANK YOU. 3649 02:59:12,901 --> 02:59:17,105 WE'LL TAKE A SEVEN-MINUTE BREAK 3650 02:59:17,105 --> 02:59:21,543 WE'RE NOT THAT FAR BEHIND, YEA. 3651 02:59:21,543 --> 02:59:23,512 ANOTHER BACK ROOM BREAK AND GRAB 3652 02:59:23,512 --> 02:59:25,847 A SNACK AND IN AN HOUR WE'LL BE 3653 02:59:25,847 --> 02:59:27,849 CONCLUDING AND TAKING A FORMAL 3654 02:59:27,849 --> 02:59:31,586 BREAK FOR LUNCH. 3655 02:59:31,586 --> 02:59:33,855 THE NEXT PANEL YOU GUYS GET 3656 02:59:33,855 --> 02:59:35,691 READY, PANEL 2. 3657 02:59:35,691 --> 02:59:42,297 WE MIGHT HAVE TO DO DOSY DO ON THE SEATING. 3658 02:59:42,297 --> 03:01:30,397 3659 03:01:30,397 --> 03:01:33,233 ALL RIGHT. 3660 03:01:33,233 --> 03:01:35,869 MY COLLEAGUE IS GOING TO TAKE 3661 03:01:35,869 --> 03:01:36,069 OVER. 3662 03:01:36,069 --> 03:01:36,803 GO FOR IT. 3663 03:01:36,803 --> 03:01:38,872 >> HELLO, EVERYONE. 3664 03:01:38,872 --> 03:01:40,340 LUCKILY I DON'T HAVE TO SWAP 3665 03:01:40,340 --> 03:01:41,742 NAME PLATES. 3666 03:01:41,742 --> 03:01:45,012 WE CAN KEEP GOING BACK AND FORM. 3667 03:01:45,012 --> 03:01:50,017 SO GIVEN THIS PANEL IS ON 3668 03:01:50,017 --> 03:01:50,584 DEFINING CONSENT AND DATA 3669 03:01:50,584 --> 03:01:52,652 COLLECTION AND RESEARCH, I 3670 03:01:52,652 --> 03:01:53,720 WANTED TO KICK OFF WITH A BIT OF 3671 03:01:53,720 --> 03:01:54,721 A BROAD QUESTION FOR EVERYONE 3672 03:01:54,721 --> 03:01:57,024 AND WE CAN GO DOWN THE LINE LIKE 3673 03:01:57,024 --> 03:01:58,258 THE LAST PANEL DID. 3674 03:01:58,258 --> 03:02:01,828 SO THE FIRST QUESTION IS WHAT 3675 03:02:01,828 --> 03:02:03,630 DOES INDIGENOUS FREE PRIOR AND 3676 03:02:03,630 --> 03:02:06,333 INFORMED CONSENT INVOLVE AND 3677 03:02:06,333 --> 03:02:07,501 WHAT CULTURAL FACTORS SHOULD 3678 03:02:07,501 --> 03:02:08,068 GUIDE THE DEVELOPMENT THIS 3679 03:02:08,068 --> 03:02:17,110 POLICY? 3680 03:02:17,110 --> 03:02:18,678 >> WE TALKED A LOT ABOUT THEIR 3681 03:02:18,678 --> 03:02:20,414 BEING SO MANY DIFFERENT TRIBES. 3682 03:02:20,414 --> 03:02:22,449 I KNOW DR. WALTERS TALKED ABOUT 3683 03:02:22,449 --> 03:02:24,484 HAVING TO REVIEW SO MANY 3684 03:02:24,484 --> 03:02:26,420 POLICIES AND LAWS AND PROCEDURES 3685 03:02:26,420 --> 03:02:27,854 AND THINGS LIKE THAT FOR HOW 3686 03:02:27,854 --> 03:02:31,958 EACH TRIBE CONDUCTS RESEARCH A 3687 03:02:31,958 --> 03:02:33,527 LITTLE BIT DIFFERENTLY. 3688 03:02:33,527 --> 03:02:36,229 SO I THINK THAT'S A BIG ISSUE. 3689 03:02:36,229 --> 03:02:41,168 HOW DO YOU ENGAGE SO MANY TRIBES 3690 03:02:41,168 --> 03:02:42,302 WITH THE CONCEPT PROCESS BECAUSE 3691 03:02:42,302 --> 03:02:44,438 IT'S DIFFERENT IN EACH OF THEIR 3692 03:02:44,438 --> 03:02:45,939 CULTURAL PRACTICES ARE DIFFERENT 3693 03:02:45,939 --> 03:02:47,908 AND PERSPECTIVES ARE DIFFERENT. 3694 03:02:47,908 --> 03:02:50,677 I CAN ONLY SPEAK FOR MY 3695 03:02:50,677 --> 03:02:52,345 EXPERIENCE IN THE CHICKASAW 3696 03:02:52,345 --> 03:02:55,682 NATION WHO I REPRESENT. 3697 03:02:55,682 --> 03:02:58,051 TO US WE TAKE BASICALLY WE VIEW 3698 03:02:58,051 --> 03:03:00,687 THE CONSENT PROCESS VERY SIMILAR 3699 03:03:00,687 --> 03:03:07,994 TO INDIVIDUAL CONSENT. 3700 03:03:07,994 --> 03:03:10,864 AND WE TAKE THE BELMONT 3701 03:03:10,864 --> 03:03:14,401 PRINCIPLES OF RESPECT AND 3702 03:03:14,401 --> 03:03:17,771 BENEFICENCE TO RESEARCH 3703 03:03:17,771 --> 03:03:20,407 PARTICIPANTS WE LOOK AT THE 3704 03:03:20,407 --> 03:03:23,110 CHICKASAW NATION IS A RESEARCH 3705 03:03:23,110 --> 03:03:23,610 PARTICIPANT AS A WHOLE. 3706 03:03:23,610 --> 03:03:26,379 WE APPLY THE SAME PRINCIPLES TO 3707 03:03:26,379 --> 03:03:27,948 THOSE SAME RESEARCH PRINCIPLES 3708 03:03:27,948 --> 03:03:31,051 TO THE TRIBE. 3709 03:03:31,051 --> 03:03:36,156 TRIBAL CONSENT, TRIBAL RISK-HARM 3710 03:03:36,156 --> 03:03:36,656 RATIO. 3711 03:03:36,656 --> 03:03:42,462 TO US THAT'S BEEN AN EASY WAY TO 3712 03:03:42,462 --> 03:03:43,897 LOOK AT IT AS A RESEARCH 3713 03:03:43,897 --> 03:03:46,199 PARTICIPANT AND APPLYING THE 3714 03:03:46,199 --> 03:03:46,600 SAME PRINCIPLES. 3715 03:03:46,600 --> 03:03:50,437 THAT'S THE WAY WE APPROACH IT IN 3716 03:03:50,437 --> 03:04:00,747 CHICKASAW NATION. 3717 03:04:07,754 --> 03:04:11,191 I'M GLAD I'M PART OF THE PANEL. 3718 03:04:11,191 --> 03:04:14,461 AS A STUDENT I'VE HAD THE 3719 03:04:14,461 --> 03:04:16,596 OPPORTUNITY TO CONDUCT INFORMED 3720 03:04:16,596 --> 03:04:18,698 CONSENT AND DONE WRITTEN 3721 03:04:18,698 --> 03:04:19,633 CONSENTS THROUGH SURVEYS BUT 3722 03:04:19,633 --> 03:04:22,536 IT'S BEEN GREAT TO LEARN ABOUT 3723 03:04:22,536 --> 03:04:23,803 THE PROCESS AND APPROPRIATELY 3724 03:04:23,803 --> 03:04:25,705 CARRY IT THROUGH. 3725 03:04:25,705 --> 03:04:31,945 I DON'T HAVE TOO MUCH TO ADD TO 3726 03:04:31,945 --> 03:04:34,347 THIS SPECIFIC QUESTION. 3727 03:04:34,347 --> 03:04:37,450 >> MY CAPACITY AS A RESEARCHER 3728 03:04:37,450 --> 03:04:42,622 AND ALSO AS A TRIBAL CITIZEN AS 3729 03:04:42,622 --> 03:04:43,957 PARTICIPATED IN RESEARCH AND 3730 03:04:43,957 --> 03:04:46,092 THEN HOW WE'RE GOING ABOUT THIS 3731 03:04:46,092 --> 03:04:50,397 IN PRACTICE. 3732 03:04:50,397 --> 03:04:52,666 SO AT THE LEVEL OF INDIGENOUS 3733 03:04:52,666 --> 03:04:55,969 CONSENT I SHOULD SAY I DON'T 3734 03:04:55,969 --> 03:04:58,305 KNOW I FEEL THAT I HAVE A 3735 03:04:58,305 --> 03:05:02,409 POSITION OR AUTHORITY TO EVEN 3736 03:05:02,409 --> 03:05:05,178 TALK ABOUT WHAT A SHAWNEE 3737 03:05:05,178 --> 03:05:06,980 CONSENT WOULD LOOK LIKE LET 3738 03:05:06,980 --> 03:05:07,981 ALONE SPEAKING FOR OTHER 3739 03:05:07,981 --> 03:05:08,548 INDIGENOUS COMMUNITIES AND 3740 03:05:08,548 --> 03:05:14,421 TRIBES AND NATIONS. 3741 03:05:14,421 --> 03:05:16,556 SO THE WAY WE'VE APPLIED IT HAS 3742 03:05:16,556 --> 03:05:19,392 BEEN TO WORK DIRECTLY WITH THE 3743 03:05:19,392 --> 03:05:20,427 AUTHORITIES OF THE ORGANIZED 3744 03:05:20,427 --> 03:05:22,829 TRIBAL GOVERNMENTS WE PARTNER 3745 03:05:22,829 --> 03:05:25,999 WITH AND THAT'S LOOKED LIKE 3746 03:05:25,999 --> 03:05:27,267 ENGAGING WITH INSTITUTIONAL 3747 03:05:27,267 --> 03:05:28,635 REVIEW BOARDS AND/OR BUSINESS 3748 03:05:28,635 --> 03:05:31,104 COUNCILS WHICH I'M SURE IS NOT 3749 03:05:31,104 --> 03:05:31,938 UNCOMMON AMONG FOLKS IN THE 3750 03:05:31,938 --> 03:05:34,708 ROOM. 3751 03:05:34,708 --> 03:05:39,446 AND THAT I WOULD SAY HAS NEVER 3752 03:05:39,446 --> 03:05:43,883 BEEN DISCUSSED DIRECTLY AS 3753 03:05:43,883 --> 03:05:45,685 COMMUNITY CONSENT. 3754 03:05:45,685 --> 03:05:46,786 HOWEVER, THE CLOSEST PROCESS 3755 03:05:46,786 --> 03:05:49,856 WE'VE ENGAGED WITH TO THAT 3756 03:05:49,856 --> 03:05:52,058 DEGREE OTHER THAN ENGAGING WITH 3757 03:05:52,058 --> 03:05:53,560 COMMUNITY ADVISORY BOARDS, 3758 03:05:53,560 --> 03:05:55,462 DISSEMINATION TO COMMUNITY 3759 03:05:55,462 --> 03:05:57,731 MEMBERS WHICH POINTS TO THE 3760 03:05:57,731 --> 03:06:01,001 DYNAMIC THE LAST PANEL BROUGHT 3761 03:06:01,001 --> 03:06:03,970 UP WHICH IS IMPORTANT TO 3762 03:06:03,970 --> 03:06:05,272 RECOGNIZE IS THERE'S A 3763 03:06:05,272 --> 03:06:08,642 DISTINCTION BETWEEN THE AGENCY'S 3764 03:06:08,642 --> 03:06:10,644 GOVERNMENTS AND SYSTEMS THAT 3765 03:06:10,644 --> 03:06:14,014 SERVE TRIBES AND EVEN THE TRIBES 3766 03:06:14,014 --> 03:06:15,949 DEVELOP AND THE COMMUNITIES OF 3767 03:06:15,949 --> 03:06:17,550 THE PEOPLE. 3768 03:06:17,550 --> 03:06:21,488 AND THEN FOR INDIVIDUAL 3769 03:06:21,488 --> 03:06:26,393 PARTICIPANTS WE FOLLOW THE 3770 03:06:26,393 --> 03:06:27,060 INFORMED CONSENT PROCESS AS LAID 3771 03:06:27,060 --> 03:06:37,137 O 3772 03:06:42,542 --> 03:06:42,642 OUT. 3773 03:06:42,642 --> 03:06:49,549 >> I'M TRYING TO TALK A LITTLE 3774 03:06:49,549 --> 03:06:50,450 BIT ABOUT IT DIFFERENTLY. 3775 03:06:50,450 --> 03:06:54,654 I WANT TO TALK ABOUT THE CONTEXT 3776 03:06:54,654 --> 03:06:55,922 FOR FPIC. 3777 03:06:55,922 --> 03:06:58,992 I LIKE TO THINK ABOUT IT IN THE 3778 03:06:58,992 --> 03:07:02,162 FRAMEWORK OF DE-COLONIAL 3779 03:07:02,162 --> 03:07:03,963 RESEARCH GOING BACK TO THE 3780 03:07:03,963 --> 03:07:06,833 BIGGER QUESTIONS OF LIKE WHO WAS 3781 03:07:06,833 --> 03:07:08,401 THE COMMUNITY INVOLVED IN 3782 03:07:08,401 --> 03:07:10,136 DEFINING THE NEED AND THE 3783 03:07:10,136 --> 03:07:11,004 RESEARCH QUESTION. 3784 03:07:11,004 --> 03:07:16,076 SO LIKE BASICALLY FLIPPING THE 3785 03:07:16,076 --> 03:07:19,546 TYPICAL RESEARCH PARADIGM ON ITS 3786 03:07:19,546 --> 03:07:21,481 HEAD AND DOES THE COMMUNITY 3787 03:07:21,481 --> 03:07:23,683 DEFINE THE RESEARCH QUESTION AND 3788 03:07:23,683 --> 03:07:26,419 DID THEY -- HOW ARE THEY GOING 3789 03:07:26,419 --> 03:07:27,287 TO GOVERN THE RESEARCH. 3790 03:07:27,287 --> 03:07:32,592 HOW WILL THEY APPROVE THE 3791 03:07:32,592 --> 03:07:32,859 RESEARCH? 3792 03:07:32,859 --> 03:07:36,496 AND HOW WILL THEY FOLLOW THROUGH 3793 03:07:36,496 --> 03:07:38,031 WITH THE RESEARCH AND ADDRESS 3794 03:07:38,031 --> 03:07:39,599 THE LEGACY QUESTIONS AND ADDRESS 3795 03:07:39,599 --> 03:07:41,634 ALL THOSE OTHER KINDS OF 3796 03:07:41,634 --> 03:07:42,068 QUESTIONS. 3797 03:07:42,068 --> 03:07:47,040 AND SO IN THAT SENSE THEN 3798 03:07:47,040 --> 03:07:48,141 CONSENT BECOMES A PROCESS RATHER 3799 03:07:48,141 --> 03:07:49,776 THAN AN EVENT. 3800 03:07:49,776 --> 03:07:53,413 AND SO THE COMMUNITY IS ENGAGED 3801 03:07:53,413 --> 03:07:56,850 THROUGHOUT EVERY ASPECT OF THE 3802 03:07:56,850 --> 03:08:02,422 RESEARCH PROPOSAL AND PROCESS. 3803 03:08:02,422 --> 03:08:07,927 AND IN CONTROL RATHER THAN BEING 3804 03:08:07,927 --> 03:08:18,338 THE SUBJECT OF RESEARCH. 3805 03:08:19,105 --> 03:08:26,579 AND RELATIONSHIP MAINTENANCE AND 3806 03:08:26,579 --> 03:08:28,481 DR. SMITH ASKED CAN YOU COME 3807 03:08:28,481 --> 03:08:29,983 BACK AND HAVE COFFEE WITH THE 3808 03:08:29,983 --> 03:08:34,554 COMMUNITY THE NEXT WEEK OR YEAR. 3809 03:08:34,554 --> 03:08:35,789 HAS THE RELATIONSHIP BEEN THAT 3810 03:08:35,789 --> 03:08:38,425 GOOD THAT YOU'RE COMING BACK TO 3811 03:08:38,425 --> 03:08:41,795 THE COFFEE TABLE BECAUSE YOU 3812 03:08:41,795 --> 03:08:43,296 FINISHED ONE AND MAYBE NOW 3813 03:08:43,296 --> 03:08:44,798 RESEARCH QUESTIONS HAVE EMERGED 3814 03:08:44,798 --> 03:08:48,034 BUT IT'S COMMUNITY CONTROLS. 3815 03:08:48,034 --> 03:08:58,044 SO I'LL LEAVE IT THERE. 3816 03:08:58,044 --> 03:09:01,147 I GUESS THE REASON I ASKED ABOUT 3817 03:09:01,147 --> 03:09:04,784 NUANCE IN THE EMERGING NIH 3818 03:09:04,784 --> 03:09:08,455 INDIGENOUS DATA SOVEREIGNTY 3819 03:09:08,455 --> 03:09:11,958 POLICY IS BECAUSE ONCE THINGS 3820 03:09:11,958 --> 03:09:14,427 BECOME POLICY THEY BECOME FIXED 3821 03:09:14,427 --> 03:09:19,966 AND RIGID AND INAPPLICABLE 3822 03:09:19,966 --> 03:09:22,735 DESPITE GOOD INTENTIONS THAT MAY 3823 03:09:22,735 --> 03:09:23,970 HAVE INFORMED THEIR CREATION IN 3824 03:09:23,970 --> 03:09:29,909 THE FIRST PLACE. 3825 03:09:29,909 --> 03:09:33,346 I RUN INTO THIS MANY TIMES IN 3826 03:09:33,346 --> 03:09:36,516 TRYING TO FUNNEL, IF YOU WILL, 3827 03:09:36,516 --> 03:09:41,421 OUR WORK WITH TRIBAL COMMUNITIES 3828 03:09:41,421 --> 03:09:47,460 THAT IS OPEN, EXPANSIVE, 3829 03:09:47,460 --> 03:09:56,469 EVOLVING, GROUNDED IN CULTURAL 3830 03:09:56,469 --> 03:09:57,804 CONTEXTS AND RIGID SYSTEMS AND 3831 03:09:57,804 --> 03:09:59,873 STRUCTURES WITHIN OUR ACADEMIC 3832 03:09:59,873 --> 03:10:03,943 INSTITUTIONS, IN MY CASE. 3833 03:10:03,943 --> 03:10:05,879 AS WE KNOW THINGS DON'T FIT WHEN 3834 03:10:05,879 --> 03:10:07,981 THE RUBBER HITS THE ROAD AT THAT 3835 03:10:07,981 --> 03:10:13,353 LEVEL. 3836 03:10:13,353 --> 03:10:16,389 WHEN WE TALK ABOUT FREE AND 3837 03:10:16,389 --> 03:10:17,991 INFORMED CONSENT I'M THINKING 3838 03:10:17,991 --> 03:10:23,062 CONCRETELY HERE ABOUT CONSENT 3839 03:10:23,062 --> 03:10:30,003 FORMS AND YOU HAVE TO INCLUDE 3840 03:10:30,003 --> 03:10:35,675 THE LANGUAGE EXACTLY AS WRITTEN 3841 03:10:35,675 --> 03:10:40,213 AND AGAIN I'M SURE IT CAME FROM 3842 03:10:40,213 --> 03:10:42,615 A GOOD PLACE WITH GOOD 3843 03:10:42,615 --> 03:10:43,516 INTENTIONS BUT ONCE IT BECOMES 3844 03:10:43,516 --> 03:10:47,954 FIXED AND RIGID TO ME IT'S 3845 03:10:47,954 --> 03:10:52,926 ALMOST NO LONGER INFORMED 3846 03:10:52,926 --> 03:11:03,436 CONSENT I THINK AND I'VE DONE 3847 03:11:05,672 --> 03:11:11,945 WORK AND ONE OF THE MOST 3848 03:11:11,945 --> 03:11:13,012 INSTRUCTIVE THINGS AT THE 3849 03:11:13,012 --> 03:11:15,648 COMMUNITY LEVEL WAS A LARGE 3850 03:11:15,648 --> 03:11:16,749 NATIONALLY REPRESENTATIVE STUDY 3851 03:11:16,749 --> 03:11:17,684 OF TRIBALLY RUN HEAD START 3852 03:11:17,684 --> 03:11:17,984 PROGRAMS. 3853 03:11:17,984 --> 03:11:25,258 WE RECRUITED AT RANDOM 20 TRIBAL 3854 03:11:25,258 --> 03:11:26,759 HEAD START PROGRAMS AND HAD TO 3855 03:11:26,759 --> 03:11:28,628 GO THROUGH THE REVIEW PROCESSES 3856 03:11:28,628 --> 03:11:39,038 IN THOSE 20 COMMUNITIES. 3857 03:12:00,026 --> 03:12:01,594 AND MAKING IT IN PLAIN HUMAN 3858 03:12:01,594 --> 03:12:02,295 LANGUAGE UNDERSTAND WHAT YOU'RE 3859 03:12:02,295 --> 03:12:04,664 DOING AND AS A RESEARCHER YOU 3860 03:12:04,664 --> 03:12:06,432 HAVE TO VERY MUCH UNDERSTAND THE 3861 03:12:06,432 --> 03:12:07,600 NATURE OF THE RESEARCH YOU'RE 3862 03:12:07,600 --> 03:12:08,234 DOING. 3863 03:12:08,234 --> 03:12:10,770 IT'S LIMITATIONS, IT'S 3864 03:12:10,770 --> 03:12:12,105 POSSIBILITIES, WHAT IT IS, WHAT 3865 03:12:12,105 --> 03:12:14,073 IT ISN'T, IMPLICATIONS FOR THE 3866 03:12:14,073 --> 03:12:15,508 LONG-TERM THAT A TRIBE MIGHT 3867 03:12:15,508 --> 03:12:19,445 WANT TO CONSIDER AND SAYING YES 3868 03:12:19,445 --> 03:12:25,818 OR NO AND YOU JUST -- YOU HAVE 3869 03:12:25,818 --> 03:12:35,595 TO NOT USE THAT IRB-ESE YOU'RE 3870 03:12:35,595 --> 03:12:36,295 GIVEN. 3871 03:12:36,295 --> 03:12:41,034 WITHIN THE INDIGENOUS DATA 3872 03:12:41,034 --> 03:12:42,301 SOVEREIGNTY POLICY I THINK 3873 03:12:42,301 --> 03:12:47,974 GIVING PERMISSION AND THE COMMON 3874 03:12:47,974 --> 03:12:51,644 THREAD OR THE HEARTBEAT OF THE 3875 03:12:51,644 --> 03:12:53,413 POLICY IS THERE'S SPACE AND THE 3876 03:12:53,413 --> 03:12:58,885 ASSOCIATED SPACE AND TIME AND 3877 03:12:58,885 --> 03:13:00,153 RESOURCES TO TAKE THAT TIME TO 3878 03:13:00,153 --> 03:13:03,156 MEET COMMUNITIES AND PEOPLE 3879 03:13:03,156 --> 03:13:05,758 WHERE THEY ARE AND NOT FORCED 3880 03:13:05,758 --> 03:13:11,631 INTO FIXED LANGUAGE FOR 3881 03:13:11,631 --> 03:13:12,832 STRUCTURES AND AGAIN WE'RE 3882 03:13:12,832 --> 03:13:13,966 SPEAKING OF CONSENT BUT I THINK 3883 03:13:13,966 --> 03:13:23,743 IT APPLIES MORE BROADLY. 3884 03:13:23,743 --> 03:13:26,379 DEF SEF 3885 03:13:26,979 --> 03:13:30,183 >> MY NOTES RESOLVE AROUND WHAT 3886 03:13:30,183 --> 03:13:40,727 DR. HARRY HAS SAID AND WHAT WAS 3887 03:13:51,204 --> 03:13:57,443 DEVELOPED BY DR. CARROLL'S 3888 03:13:57,443 --> 03:13:59,946 OFFICE AND WHAT YOU'RE SAYING 3889 03:13:59,946 --> 03:14:05,752 THE PRINCIPLES DEVELOPED AND 3890 03:14:05,752 --> 03:14:07,954 PEOPLE STOP THINKING WHAT DOES 3891 03:14:07,954 --> 03:14:18,264 THE ACRONYM MEAN. 3892 03:14:19,499 --> 03:14:21,934 WHO SHOULD BE PROVIDED AND 3893 03:14:21,934 --> 03:14:24,070 REVIEW FINAL APPROVAL AND THAT'S 3894 03:14:24,070 --> 03:14:25,037 DEPENDENT ON HOW THIS TRIBAL 3895 03:14:25,037 --> 03:14:29,008 GOVERNMENT IS SET UP. 3896 03:14:29,008 --> 03:14:32,445 IF THAT TRIBAL GOVERNMENT HAS 3897 03:14:32,445 --> 03:14:36,816 FEDERAL RECOGNITION AND IS EVEN 3898 03:14:36,816 --> 03:14:38,217 CONSIDERED AS A TRIBE. 3899 03:14:38,217 --> 03:14:40,520 SO THAT PART I DON'T ENVY YOU IN 3900 03:14:40,520 --> 03:14:43,956 TRYING TO DEVELOP A 3901 03:14:43,956 --> 03:14:46,626 COMPREHENSIVE POLICY BUT ONE 3902 03:14:46,626 --> 03:14:49,862 THING THAT I FEEL STRONGLY ABOUT 3903 03:14:49,862 --> 03:14:53,499 IS THAT THE PEOPLE WHO ARE WITH 3904 03:14:53,499 --> 03:14:56,169 THE TRIBES IF IT'S DONE IN A 3905 03:14:56,169 --> 03:14:57,270 COMMUNITY-ENGAGED WAY, THE 3906 03:14:57,270 --> 03:15:01,240 PEOPLE DOING THE ACTUAL CONSENT 3907 03:15:01,240 --> 03:15:06,612 PROCESS WHO ARE INVOLVED IN THE 3908 03:15:06,612 --> 03:15:13,586 DATA COLLECTION AND THE ONES ON 3909 03:15:13,586 --> 03:15:14,554 THE GROUND DOING IT BECAUSE 3910 03:15:14,554 --> 03:15:25,097 SOMETIMES AN IRB AS A DESIGNEE 3911 03:15:25,965 --> 03:15:26,599 OR HIERARCHICAL GOVERNMENT MAYBE 3912 03:15:26,599 --> 03:15:32,004 FORGOT WHAT IT WAS LIKE TO DO 3913 03:15:32,004 --> 03:15:41,280 THE CONSENT PROCESS. 3914 03:15:41,280 --> 03:15:47,286 >> THERE'S ABOUT 500,000 PLUS OF 3915 03:15:47,286 --> 03:15:57,830 US AND THEY'RE ALL DIFFERENT AND 3916 03:16:01,300 --> 03:16:04,070 I'M NOT GOING TO TAKE ADVICE 3917 03:16:04,070 --> 03:16:04,470 FROM HER. 3918 03:16:04,470 --> 03:16:06,372 SHE'S NOT GOING TO TAKE ADVICE 3919 03:16:06,372 --> 03:16:07,640 PERFECT ME AND WE'RE GOING TO 3920 03:16:07,640 --> 03:16:09,108 COLLABORATE AND FIGURE OUT WHAT 3921 03:16:09,108 --> 03:16:11,944 WORKS. 3922 03:16:11,944 --> 03:16:14,447 GUARANTEED NOT ALWAYS GOING TO 3923 03:16:14,447 --> 03:16:24,957 WORK AND I CAN'T TALK FOR MY 3924 03:16:42,174 --> 03:16:43,943 NEIGHBORS BECAUSE THEY'RE IDEA 3925 03:16:43,943 --> 03:16:45,578 OF RESEARCH AND THEY MAY NOT 3926 03:16:45,578 --> 03:16:47,346 EVEN UNDERSTAND WHAT OUR 3927 03:16:47,346 --> 03:16:47,880 RESEARCH IS. 3928 03:16:47,880 --> 03:16:49,448 SO JUST EDUCATION ON WHAT 3929 03:16:49,448 --> 03:16:54,520 RESEARCH IS WAS THE GAME CHANGER 3930 03:16:54,520 --> 03:16:56,222 FOR MY COMMUNITY AND WE BROUGHT 3931 03:16:56,222 --> 03:17:01,661 THE POINT OF RESEARCH TO THE 3932 03:17:01,661 --> 03:17:12,204 TABLE IN 2017 AND EVERYBODY WAS 3933 03:17:27,186 --> 03:17:27,353 PRESENT. 3934 03:17:27,353 --> 03:17:30,823 WE DECIDED WE ARE GOING TO FARM 3935 03:17:30,823 --> 03:17:36,095 A FRAMEWORK TO START THE PROCESS 3936 03:17:36,095 --> 03:17:39,966 OF RESEARCH. 3937 03:17:39,966 --> 03:17:43,235 AND IT'S GOING TO FIT THOSE 3938 03:17:43,235 --> 03:17:43,769 PRESENT AT THE TABLE. 3939 03:17:43,769 --> 03:17:48,874 THAT'S STEP ONE BECAUSE WE DON'T 3940 03:17:48,874 --> 03:17:49,608 HAVE THAT RECOGNITION. 3941 03:17:49,608 --> 03:17:50,743 I'M NOT LOOKING FOR IT. 3942 03:17:50,743 --> 03:17:54,280 I SAW IT IN MYSELF AND THE SORT 3943 03:17:54,280 --> 03:18:00,519 OF THAT I EXUDE IS THE SAME 3944 03:18:00,519 --> 03:18:01,821 STYLE OF RESEARCH, BIAS OR 3945 03:18:01,821 --> 03:18:03,990 WHATEVER YOU WANT TO CALL IT I 3946 03:18:03,990 --> 03:18:14,266 PROMOTE IN MY OWN COMMUNITY. 3947 03:18:14,266 --> 03:18:17,970 >> I WANT TO TALK HOW IT'S AN 3948 03:18:17,970 --> 03:18:18,904 EVOLVING PROCESS AND SOMETHING 3949 03:18:18,904 --> 03:18:21,173 THAT POLICIES CAN BE RIGID AND 3950 03:18:21,173 --> 03:18:23,943 CAN CAUSE US TO BE SILOED AND 3951 03:18:23,943 --> 03:18:26,679 FIXATED ON SPECIFIC THING BUT 3952 03:18:26,679 --> 03:18:28,848 HAVING TO BALANCE THAT WITH THE 3953 03:18:28,848 --> 03:18:29,815 EVER EVOLVING CONSENTED PROCESS 3954 03:18:29,815 --> 03:18:31,584 BASED ON THE RESEARCH QUESTIONS 3955 03:18:31,584 --> 03:18:32,451 WE'RE ASKING. 3956 03:18:32,451 --> 03:18:34,353 HOW DO WE BALANCE THOSE TWO AND 3957 03:18:34,353 --> 03:18:36,989 HOW CAN RESEARCHERS AND THE NIH 3958 03:18:36,989 --> 03:18:38,624 ENSURE TRIBAL INDIGENOUS CONSENT 3959 03:18:38,624 --> 03:18:40,459 IS ONGOING THROUGHOUT THE COURSE 3960 03:18:40,459 --> 03:18:43,963 OF THE RESEARCH PROJECT AS IT 3961 03:18:43,963 --> 03:18:44,463 EVOLVES AND CHANGES. 3962 03:18:44,463 --> 03:18:47,967 THAT CAN BE OPEN TO ANYONE WHO 3963 03:18:47,967 --> 03:18:58,244 WANTS TO START. 3964 03:19:05,851 --> 03:19:07,987 >> OUR WORK IS GROUNDED IN 3965 03:19:07,987 --> 03:19:10,389 RELATIONSHIP AND THOSE HAVE A 3966 03:19:10,389 --> 03:19:18,864 HISTORY, A PRESENT AND A FUTURE. 3967 03:19:18,864 --> 03:19:22,768 I THINK THAT THAT'S JUST 3968 03:19:22,768 --> 03:19:23,102 FOUNDATIONAL. 3969 03:19:23,102 --> 03:19:28,040 IT'S HARD SOMETIMES TO MAINTAIN 3970 03:19:28,040 --> 03:19:29,708 RELATIONSHIPS LIKE WITHIN A CON 3971 03:19:29,708 --> 03:19:31,811 OF A RESEARCH PROJECT WHEN THOSE 3972 03:19:31,811 --> 03:19:35,214 PROJECTS ARE ONLY FUNDED FOR A 3973 03:19:35,214 --> 03:19:36,916 FINITE PERIOD OF TIME. 3974 03:19:36,916 --> 03:19:39,385 I DON'T REALLY KNOW HOW TO GET 3975 03:19:39,385 --> 03:19:43,956 AROUND THAT. 3976 03:19:43,956 --> 03:19:53,165 BUT I CAN SAY THAT FOR MYSELF AS 3977 03:19:53,165 --> 03:19:55,067 AN INDIVIDUAL FOR COMMUNITIES 3978 03:19:55,067 --> 03:19:57,937 HAVE ENDURED BEYOND THE COMINGS 3979 03:19:57,937 --> 03:20:01,774 AND GOINGS OF VARIOUS GRANTS. 3980 03:20:01,774 --> 03:20:03,676 I WOULD SAY I DON'T NECESSARILY 3981 03:20:03,676 --> 03:20:06,212 HAVE A SOLUTION FOR HOW THOSE 3982 03:20:06,212 --> 03:20:08,447 RELATIONSHIPS CAN BE 3983 03:20:08,447 --> 03:20:10,549 MEANINGFULLY SUSTAINED BECAUSE 3984 03:20:10,549 --> 03:20:13,085 IT DOES TAKE TIME AND RESOURCES 3985 03:20:13,085 --> 03:20:15,955 AND FUNDING TO KEEP 3986 03:20:15,955 --> 03:20:20,926 RELATIONSHIPS GOING BUT THE 3987 03:20:20,926 --> 03:20:22,561 EXTENT TO WHICH IT CAN BE ARE 3988 03:20:22,561 --> 03:20:23,863 UNDER SCORED THE COVERINGS 3989 03:20:23,863 --> 03:20:29,201 HAPPEN IN THE CONTEXT OF 3990 03:20:29,201 --> 03:20:39,745 RELATIONSHIPS ONE INDIVIDUAL S 3991 03:20:44,116 --> 03:20:46,152 TO COMMUNITY PARTNERSHIPS AND 3992 03:20:46,152 --> 03:20:49,188 THE RELATIONSHIP AS AN 3993 03:20:49,188 --> 03:20:50,189 ENTERPRISE OVER TIME. 3994 03:20:50,189 --> 03:20:52,324 I GUESS RELATIONSHIPS. 3995 03:20:52,324 --> 03:20:54,360 >> THAT'S INTERESTING YOU SAY 3996 03:20:54,360 --> 03:20:56,428 THAT IF I CAN GO NEXT BECAUSE 3997 03:20:56,428 --> 03:20:59,965 YOU'RE THINKING OF THE RESEARCH 3998 03:20:59,965 --> 03:21:01,467 AND ONGOINGNESS OF RELATIONSHIP 3999 03:21:01,467 --> 03:21:03,936 AND I'M THINKING ON A TECHNICAL 4000 03:21:03,936 --> 03:21:07,606 LEVEL WHAT CAN BE DONE. 4001 03:21:07,606 --> 03:21:10,843 SO I NOW REALIZE THIS MIGHT 4002 03:21:10,843 --> 03:21:13,546 BECOME LIKE VERY CONCRETE AND 4003 03:21:13,546 --> 03:21:15,714 OPEN TO INTERPRETATION. 4004 03:21:15,714 --> 03:21:21,153 BUT ONE OF THE THINGS I THOUGHT 4005 03:21:21,153 --> 03:21:25,424 ABOUT AS A COMPONENT REQUIRED 4006 03:21:25,424 --> 03:21:29,595 FOR THE RESEARCH CONSENT IS THAT 4007 03:21:29,595 --> 03:21:33,399 WITHIN THE LERT OR RESOLUTION OR 4008 03:21:33,399 --> 03:21:38,304 WHATEVER IS GIVEN TOO NIH THE 4009 03:21:38,304 --> 03:21:39,972 IRB IS THE ONGOING PREVENTION IS 4010 03:21:39,972 --> 03:21:49,348 SPELLED OUT. 4011 03:21:49,348 --> 03:21:50,449 THE TRIBES HAS A RIGHT TO ASK 4012 03:21:50,449 --> 03:21:52,751 FOR A NEW CONSENT AT FUNDING. 4013 03:21:52,751 --> 03:21:57,957 TRIBE AS A RIGHT TO ASK FOR NEW 4014 03:21:57,957 --> 03:21:59,391 CONSENT AT DISSEMINATION OR 4015 03:21:59,391 --> 03:21:59,992 WHATEVER THE APPROVAL STAGES 4016 03:21:59,992 --> 03:22:10,069 ARE. 4017 03:22:18,477 --> 03:22:19,945 THE SOONER THEY CAN START THE 4018 03:22:19,945 --> 03:22:25,718 BETTER EVEN BEFORE THE RESEARCH 4019 03:22:25,718 --> 03:22:27,753 PROJECT. 4020 03:22:27,753 --> 03:22:32,324 AND TRIBES YOU HAVE INTERESTING 4021 03:22:32,324 --> 03:22:33,692 IN WORK WITH YOU GET TO KNOW THE 4022 03:22:33,692 --> 03:22:35,227 COMMUNITY AND FOLKS THERE AND 4023 03:22:35,227 --> 03:22:38,430 WHAT THE HEALTH PRIORITIES IN 4024 03:22:38,430 --> 03:22:40,266 THIS PARTICULAR CASE IS FOR NIH. 4025 03:22:40,266 --> 03:22:42,468 I THINK THE RELATIONSHIPS NEED 4026 03:22:42,468 --> 03:22:46,639 TO START EARLY, EARLY, EARLY. 4027 03:22:46,639 --> 03:22:47,339 UNFORTUNATELY THE GRANT 4028 03:22:47,339 --> 03:22:49,141 MECHANISMS AREN'T SET UP FOR THE 4029 03:22:49,141 --> 03:22:52,044 DEVELOPING THOSE RELATIONSHIPS 4030 03:22:52,044 --> 03:22:54,246 BECAUSE THE FINDINGS AND YOU 4031 03:22:54,246 --> 03:22:59,952 HAVE SIX WEEKS TO GET IT DONE 4032 03:22:59,952 --> 03:23:05,124 AND IT'S LIKE OKAY YOU DON'T 4033 03:23:05,124 --> 03:23:07,960 WANT TO SHOW UP WITH IT FUNDED 4034 03:23:07,960 --> 03:23:10,996 AND ARE YOU WILLING TO DO THAT. 4035 03:23:10,996 --> 03:23:12,665 I THINK THAT'S AN IMPORTANT 4036 03:23:12,665 --> 03:23:13,899 PIECE THAT NEEDS TO BE ADDRESSED 4037 03:23:13,899 --> 03:23:17,069 AND RIGHT NOW I'M ON A TRIBAL 4038 03:23:17,069 --> 03:23:18,470 NATIONS ADVISORY COMMITTEE FOR 4039 03:23:18,470 --> 03:23:21,273 THE NIH PROJECT CALLED THE 4040 03:23:21,273 --> 03:23:22,441 DISCOVERY PROJECT AND I BELIEVE 4041 03:23:22,441 --> 03:23:25,277 IT'S NIDDK. 4042 03:23:25,277 --> 03:23:26,845 AND IT WAS FUNDED AND I'M HAVING 4043 03:23:26,845 --> 03:23:28,647 A HARD TIME WRAPPING MY HEAD 4044 03:23:28,647 --> 03:23:30,783 AROUND THIS AND IT WAS FUNDED 4045 03:23:30,783 --> 03:23:31,950 AND IN THE FIRST YEAR IT'S 4046 03:23:31,950 --> 03:23:34,253 SETTING UP RELATIONSHIPS. 4047 03:23:34,253 --> 03:23:35,688 IT'S LIKE WOW THE PLANNING IS 4048 03:23:35,688 --> 03:23:37,556 GOING ON IN THE FIRST YEAR. 4049 03:23:37,556 --> 03:23:41,627 NOTHING IS SET IN STONE. 4050 03:23:41,627 --> 03:23:43,095 THERE'S THREE -- IT'S A NATIONAL 4051 03:23:43,095 --> 03:23:43,362 STUDY. 4052 03:23:43,362 --> 03:23:47,966 THREE OF THE SITES ARE WORKING 4053 03:23:47,966 --> 03:23:50,436 WITH A LOT OF FIRST AMERICAN 4054 03:23:50,436 --> 03:23:53,138 PEOPLE AND THIS IS GIVEN IN TIME 4055 03:23:53,138 --> 03:23:55,607 TO REACH OUT TO THE CHEROKEE AND 4056 03:23:55,607 --> 03:24:01,113 SAY WHAT KIND OF ISSUES DO YOU 4057 03:24:01,113 --> 03:24:03,949 HAVE WITH THIS AND WE'RE HAVING 4058 03:24:03,949 --> 03:24:10,255 THE CONVERSATIONS BEFORE. 4059 03:24:10,255 --> 03:24:10,856 AS WE'RE DIFFERENT INTEREST 4060 03:24:10,856 --> 03:24:11,790 TRIBE TO TRIBE AND ECHOING GOOD 4061 03:24:11,790 --> 03:24:22,067 LUCK WITH THIS. 4062 03:24:26,171 --> 03:24:29,208 I LOVE THE MECHANISM WHERE 4063 03:24:29,208 --> 03:24:30,075 THERE'S RELATIONSHIP WITH TRIBES 4064 03:24:30,075 --> 03:24:32,444 INTERESTED IN PARTICIPATING 4065 03:24:32,444 --> 03:24:33,712 WORKING OUT THESE THINGS IN 4066 03:24:33,712 --> 03:24:38,751 ADVANCE LISTENING TO EACH TRIBE 4067 03:24:38,751 --> 03:24:41,420 AND SAYING OKAY, WE CAN WORK 4068 03:24:41,420 --> 03:24:41,854 WITH THAT. 4069 03:24:41,854 --> 03:24:43,522 I HOPE IT'S A MECHANISM BECAUSE 4070 03:24:43,522 --> 03:24:48,761 IT SETS A FOUNDATION FOR A 4071 03:24:48,761 --> 03:24:50,429 SUCCESSFUL PROJECT. 4072 03:24:50,429 --> 03:24:57,369 IT'S BENEFICIAL SO THANK YOU. 4073 03:24:57,369 --> 03:24:59,171 >> I'LL MY AGREEMENT TO WHAT'S 4074 03:24:59,171 --> 03:25:01,907 BEEN SAID SO FAR TO THE PLANNING 4075 03:25:01,907 --> 03:25:05,544 STAGES AND THE LUCK INVOLVED. 4076 03:25:05,544 --> 03:25:10,082 I ALSO HAD -- MY MIND WENT TO A 4077 03:25:10,082 --> 03:25:11,950 CONCRETE PROCEDURAL SUGGESTION 4078 03:25:11,950 --> 03:25:15,421 THAT COULD BE INCLUDED AS WELL 4079 03:25:15,421 --> 03:25:16,588 AND YOU THINK WITH CAREFUL 4080 03:25:16,588 --> 03:25:23,328 CONSIDERATION YOU CAN BUILD IN 4081 03:25:23,328 --> 03:25:24,029 FLEXIBI 4082 03:25:24,029 --> 03:25:25,931 FLEXIBILITY AND THE ON THE 4083 03:25:25,931 --> 03:25:28,667 GROUND REALITY AND THE 4084 03:25:28,667 --> 03:25:31,203 MECHANISMS WE ALREADY HAVE FOR 4085 03:25:31,203 --> 03:25:36,642 ONGOING REVIEW FOR LIKE AN RPGR 4086 03:25:36,642 --> 03:25:39,878 FOR AGREEMENTS WITH TRIBES I 4087 03:25:39,878 --> 03:25:40,512 COULD SEE A SITUATION WHICH 4088 03:25:40,512 --> 03:25:42,214 YOU'RE IN A RELATIONSHIP IN 4089 03:25:42,214 --> 03:25:44,283 RESEARCH IN A COMMUNITY AND YOU 4090 03:25:44,283 --> 03:25:48,320 HAVE THE DUTY TO PROVIDE THAT 4091 03:25:48,320 --> 03:25:51,957 SAME LEVEL OF INFORMATION 4092 03:25:51,957 --> 03:25:53,859 ANNUALLY TO YOUR COMMUNITY 4093 03:25:53,859 --> 03:25:56,195 PARTNERS AND I THINK THAT MIGHT 4094 03:25:56,195 --> 03:26:01,700 BE A MECHANISM OF KEEPING THAT 4095 03:26:01,700 --> 03:26:03,969 RELATIONSHIP PERMEATING THROUGH 4096 03:26:03,969 --> 03:26:11,276 THE PROCESS. 4097 03:26:11,276 --> 03:26:13,979 AND STRONG EYES ABOUT THE 4098 03:26:13,979 --> 03:26:24,423 REPORTING RPIs YET AGAIN. 4099 03:26:33,699 --> 03:26:44,009 >> THERE'S MANY FORMS 4100 03:26:45,677 --> 03:26:45,711 >> 4101 03:26:49,615 --> 03:26:55,254 I FEEL LIKE OKAY WE NEED TO MAKE 4102 03:26:55,254 --> 03:27:03,862 SURE AND NAVAJO NATION HUMAN 4103 03:27:03,862 --> 03:27:14,072 RESEARC 4104 03:27:16,108 --> 03:27:16,341 RESEARCHER. 4105 03:27:16,341 --> 03:27:17,175 AS A NAVAJO NATION WE HAVE AN 4106 03:27:17,175 --> 03:27:27,686 IRB AND THINKING ABOUT IT AND 4107 03:27:27,886 --> 03:27:30,856 MAKING SURE THEY'RE UP TO DATE 4108 03:27:30,856 --> 03:27:32,124 ON WHAT THEY'RE PARTICIPATING 4109 03:27:32,124 --> 03:27:33,759 AND MAY MENTIONED COMMUNITY 4110 03:27:33,759 --> 03:27:38,463 TRAINING AND UNDERSTANDING THE 4111 03:27:38,463 --> 03:27:47,072 WHOLE PROCESS MY MOM RECENTLY 4112 03:27:47,072 --> 03:27:47,973 PARTICIPATED AND DOESN'T 4113 03:27:47,973 --> 03:27:50,475 UNDERSTAND AND THE PARTICIPANTS 4114 03:27:50,475 --> 03:27:53,812 A WHOLE VIEW OF THE PROCESS AND 4115 03:27:53,812 --> 03:27:59,985 FOR ME I WAS A STUDENT AND IT'S 4116 03:27:59,985 --> 03:28:05,424 AN INFORMED CONSENT PROCESS AND 4117 03:28:05,424 --> 03:28:09,094 MAKING SURE THEY UNDERSTAND THE 4118 03:28:09,094 --> 03:28:11,163 ACTION GOES IS HELPFUL. 4119 03:28:11,163 --> 03:28:16,802 >> I AGREE WITH EVERYTHING SAID. 4120 03:28:16,802 --> 03:28:20,372 THIS AN OVERSIGHT QUESTION. 4121 03:28:20,372 --> 03:28:23,108 IT'S RELATED TO CAPACITY 4122 03:28:23,108 --> 03:28:23,375 BUILDING. 4123 03:28:23,375 --> 03:28:27,946 I WANT TO FOCUS ON THE CONCEPT 4124 03:28:27,946 --> 03:28:31,183 OF BEING FULLY INFORMED BECAUSE 4125 03:28:31,183 --> 03:28:35,253 THAT TO ME IS THE CHALLENGE. 4126 03:28:35,253 --> 03:28:39,958 A COMMUNITY HAS THE TIME TO 4127 03:28:39,958 --> 03:28:42,995 FULLY ENGAGE IN ALL OF THE RISK 4128 03:28:42,995 --> 03:28:43,729 AND BENEFITS OF POTENTIAL 4129 03:28:43,729 --> 03:28:46,331 RESEARCH AND ARE ABLE TO MAKE 4130 03:28:46,331 --> 03:28:48,467 FULLY INFORMED DECISIONS ABOUT 4131 03:28:48,467 --> 03:28:49,067 THAT. 4132 03:28:49,067 --> 03:28:51,470 THAT REQUIRES SOME ABILITY TO 4133 03:28:51,470 --> 03:28:55,741 HAVE OVERSIGHT OVER THE RESEARCH 4134 03:28:55,741 --> 03:28:58,577 AND NOT EVERYBODY IS LIKE THE 4135 03:28:58,577 --> 03:29:00,045 NAVAJO NATION WITH FULLY FORMED 4136 03:29:00,045 --> 03:29:02,481 IRBs AND CODIFIED LAW. 4137 03:29:02,481 --> 03:29:05,250 THAT KIND OF THING. 4138 03:29:05,250 --> 03:29:06,818 SOME COMMUNITIES ARE VULNERABLE. 4139 03:29:06,818 --> 03:29:08,086 HOW DO YOU MAKE SURE THEY ALSO 4140 03:29:08,086 --> 03:29:13,592 HAVE THE SAME LEVEL OF 4141 03:29:13,592 --> 03:29:23,168 PROTECTION AND OVERSIGHT AND 4142 03:29:23,168 --> 03:29:28,407 MAYBE IT REQUIRES ADDITIONAL 4143 03:29:28,407 --> 03:29:28,740 TRAINING. 4144 03:29:28,740 --> 03:29:31,743 MAYBE IT REQUIRES PARTNERSHIPS 4145 03:29:31,743 --> 03:29:33,178 WITH FULLY FORMED COMMITTEES OR 4146 03:29:33,178 --> 03:29:34,780 REVIEW BOARDS AND THAT KIND OF 4147 03:29:34,780 --> 03:29:35,347 THING. 4148 03:29:35,347 --> 03:29:37,282 FINALLY SOME PEOPLE HAVE TALKED 4149 03:29:37,282 --> 03:29:39,818 ABOUT RESEARCH AGREEMENTS AND I 4150 03:29:39,818 --> 03:29:42,654 FULLY SUPPORT THE USE OF 4151 03:29:42,654 --> 03:29:45,457 RESEARCH AGREEMENTS BUT ALSO 4152 03:29:45,457 --> 03:29:47,959 GOING BEYOND THAT TO 4153 03:29:47,959 --> 03:29:51,863 ESTABLISHING CODIFIED LAW AT THE 4154 03:29:51,863 --> 03:29:52,397 TRIBAL LEVEL. 4155 03:29:52,397 --> 03:29:54,966 >> SO LIKE WE DON'T HAVE AN 4156 03:29:54,966 --> 03:29:57,836 ESTABLISHED IRB BUT DO HAVE OUR 4157 03:29:57,836 --> 03:29:59,237 RESEARCH MODEL AND THE SHARK 4158 03:29:59,237 --> 03:30:02,207 TANK SO IF THERE'S SOMEONE THAT 4159 03:30:02,207 --> 03:30:05,177 WANTS TO DO SOME KIND OF 4160 03:30:05,177 --> 03:30:07,646 RESEARCH PROJECT YOU HAVE TO 4161 03:30:07,646 --> 03:30:09,648 PARTICIPATE IN OUR MEETINGS 4162 03:30:09,648 --> 03:30:10,382 THREE MONTHS BEFORE THE SHARK 4163 03:30:10,382 --> 03:30:12,384 TANK SO IT FORCES YOU TO BE IN 4164 03:30:12,384 --> 03:30:13,752 RELATIONSHIP WITH THE COMMUNITY. 4165 03:30:13,752 --> 03:30:20,459 OUR COMMUNITY IS MADE UP OF AGE 4166 03:30:20,459 --> 03:30:20,726 GROUPS. 4167 03:30:20,726 --> 03:30:27,966 I LIVE ON THE STREET ON THE PATH 4168 03:30:27,966 --> 03:30:29,434 OF THE WARRIOR AND THEY DIDN'T 4169 03:30:29,434 --> 03:30:31,503 KNOW WHAT RESEARCH WAS BEFORE 4170 03:30:31,503 --> 03:30:33,105 BUT AFTER SEVEN YEARS OF 4171 03:30:33,105 --> 03:30:34,940 LEARNING THEY'RE VERY AWARE OF 4172 03:30:34,940 --> 03:30:36,208 WHAT THUR RIGHTS ARE AND THE 4173 03:30:36,208 --> 03:30:37,576 ONLY ONES THAT CAN VOTE. 4174 03:30:37,576 --> 03:30:39,377 ONLY THE PEOPLE FROM OUR 4175 03:30:39,377 --> 03:30:39,644 COMMUNITY. 4176 03:30:39,644 --> 03:30:41,713 THERE'S PEOPLE WHO SHOW UP THAT 4177 03:30:41,713 --> 03:30:43,115 HAVE THE GRANT AND THINK THEY'RE 4178 03:30:43,115 --> 03:30:48,754 DOING US A FAVOR. 4179 03:30:48,754 --> 03:30:52,891 WELL, PARDON ME YOU'RE [BLEEP] 4180 03:30:52,891 --> 03:30:53,859 OUT OF LUCK. 4181 03:30:53,859 --> 03:30:55,293 >> I WANTED TO COMMENT ON 4182 03:30:55,293 --> 03:30:59,965 DR. HARRY'S FULLY INFORMED 4183 03:30:59,965 --> 03:31:01,533 CONSENT STATEMENTS BECAUSE IT'S 4184 03:31:01,533 --> 03:31:05,771 SO TRUE IT'S HARD TO GET FULL 4185 03:31:05,771 --> 03:31:07,472 GETTING FULL CONSENT. 4186 03:31:07,472 --> 03:31:10,408 WE HAVE AN IRB AND WE'VE HAD IT 4187 03:31:10,408 --> 03:31:12,477 SINCE 1998 AND I'M THE CHAIR. 4188 03:31:12,477 --> 03:31:15,013 BUT IT'S LIKE A PART-TIME GIG. 4189 03:31:15,013 --> 03:31:17,115 I DO THAT ON THE SIDE BECAUSE I 4190 03:31:17,115 --> 03:31:18,617 LOVE THAT WORK. 4191 03:31:18,617 --> 03:31:19,951 AND I'M REALLY INVESTED IN THAT 4192 03:31:19,951 --> 03:31:25,590 WORK AND WHAT I LIKE TO DO. 4193 03:31:25,590 --> 03:31:29,561 I DO IT HALF ASS SOMETIMES AND 4194 03:31:29,561 --> 03:31:32,898 SHOULD DO A BETTER JOB BUT WE 4195 03:31:32,898 --> 03:31:35,200 NEED STAFF AND THERE'S AN NIH 4196 03:31:35,200 --> 03:31:37,235 MECHANISM TO ESTABLISH OR EXPAND 4197 03:31:37,235 --> 03:31:39,771 IRBs IN TRIBES AND SO THAT'S A 4198 03:31:39,771 --> 03:31:41,473 GREAT STEP RIGHT THERE BECAUSE I 4199 03:31:41,473 --> 03:31:43,508 WOULD LOVE TO HAVE DEDICATED 4200 03:31:43,508 --> 03:31:44,509 STAFF TO DO THIS WORK. 4201 03:31:44,509 --> 03:31:49,481 THE OTHER ISSUE I HAVE WITH 4202 03:31:49,481 --> 03:31:54,986 FULLY INFORMED CONSENT IS DATA 4203 03:31:54,986 --> 03:31:57,289 REPOSITORIES, BIG DATA SETS THE 4204 03:31:57,289 --> 03:31:58,623 BIGGER THEY GET AND SECONDARY 4205 03:31:58,623 --> 03:32:00,525 USE OF DATA. 4206 03:32:00,525 --> 03:32:02,260 THE FOURTH YOU GET FROM FULLY 4207 03:32:02,260 --> 03:32:02,828 INFORMED CONSENT. 4208 03:32:02,828 --> 03:32:04,763 I DON'T KNOW HOW YOU CAN HAVE 4209 03:32:04,763 --> 03:32:07,966 FULLY INFORMED CONSENT IN A 4210 03:32:07,966 --> 03:32:09,835 REPOSITORY. 4211 03:32:09,835 --> 03:32:12,404 YOU MAY AGREE TO PUT YOUR 4212 03:32:12,404 --> 03:32:17,042 SPECIMENS IN A DATA REPOSITORIES 4213 03:32:17,042 --> 03:32:18,109 BUT I DON'T KNOW HOW IT WILL BE 4214 03:32:18,109 --> 03:32:18,410 USED. 4215 03:32:18,410 --> 03:32:24,616 WE THESE TO LOOK AT THAT BECAUSE 4216 03:32:24,616 --> 03:32:26,484 YOU CAN'T HAVE FULLY INFORMED 4217 03:32:26,484 --> 03:32:27,819 CONSENT IF YOU ARE NOT PUTTING 4218 03:32:27,819 --> 03:32:29,654 YOUR INFORMATION IN A REPOSITORY 4219 03:32:29,654 --> 03:32:32,123 AND THE BIGGER THAT GETS THE 4220 03:32:32,123 --> 03:32:35,260 FURTHER YOU GET FROM TRIBAL DATA 4221 03:32:35,260 --> 03:32:35,961 SOVEREIGNTY. 4222 03:32:35,961 --> 03:32:46,137 THANK YOU. 4223 03:32:55,981 --> 03:33:00,685 AND I'LL ASK ABOUT THE MAIN 4224 03:33:00,685 --> 03:33:05,824 STRENGTHS AND BARRIERS AND HOW 4225 03:33:05,824 --> 03:33:11,963 CAN THEY ADDRESS AND LOOK AT 4226 03:33:11,963 --> 03:33:17,936 WHAT OFTEN FACED. 4227 03:33:17,936 --> 03:33:28,480 >> RELATIONSHIPS TAKE TIME AND 4228 03:33:33,852 --> 03:33:35,754 THERE'S TIME AND SPACE TO THE 4229 03:33:35,754 --> 03:33:39,090 PROJECT AND RESOURCES CAN BE 4230 03:33:39,090 --> 03:33:41,426 DEDICATED TO HAVING THE TIME AND 4231 03:33:41,426 --> 03:33:45,997 THE SPACE TO ENGAGE IN AUTHENTIC 4232 03:33:45,997 --> 03:33:47,933 CONVERSATION GROUNDED IN 4233 03:33:47,933 --> 03:33:51,870 RELATIONSHIP THAT INVOLVES 4234 03:33:51,870 --> 03:33:54,339 DIALOGUE AND BACK AND FORTH. 4235 03:33:54,339 --> 03:33:57,242 I KNOW I'VE CONSULTED WITH BOBBY 4236 03:33:57,242 --> 03:34:02,247 ON SOME THINGS. 4237 03:34:02,247 --> 03:34:10,588 I'VE APPRECIATED THE ABILITY TO 4238 03:34:10,588 --> 03:34:11,756 SHARE PERSPECTIVES AND TURN 4239 03:34:11,756 --> 03:34:13,024 IDEAS AROUND AND LOOK AT THEM 4240 03:34:13,024 --> 03:34:19,965 FROM DIFFERENT ANGLES AND COME 4241 03:34:19,965 --> 03:34:22,000 TO CONSENSUS OPINION HOW 4242 03:34:22,000 --> 03:34:29,874 SOMETHING SHOULD PROCEED. 4243 03:34:29,874 --> 03:34:31,843 AND WHAT WE ARE LOOKING AND YOU 4244 03:34:31,843 --> 03:34:32,510 TALKED ABOUT THIS IS THE TIME 4245 03:34:32,510 --> 03:34:35,180 AND SPACE TO DO THIS WORK IN THE 4246 03:34:35,180 --> 03:34:38,516 WAY THAT IT NEEDS TO BE DONE AND 4247 03:34:38,516 --> 03:34:42,187 THAT'S GROUNDED IN RELATIONSHIP 4248 03:34:42,187 --> 03:34:43,822 AND HAVING DIALOGUE AND TO THE 4249 03:34:43,822 --> 03:34:46,358 CHANCE TO ARRIVE AT SOME SHARED 4250 03:34:46,358 --> 03:34:47,993 UNDERSTANDING THAT YOU 4251 03:34:47,993 --> 03:34:58,370 CO-CONSTRUCT TOGETHER. 4252 03:34:59,838 --> 03:35:05,343 >> IT COMES DOWN TO TRUTH TO 4253 03:35:05,343 --> 03:35:08,113 SPEAK THE TRUTH. 4254 03:35:08,113 --> 03:35:11,082 >> SO TWO THINGS THAT CAME TO 4255 03:35:11,082 --> 03:35:17,589 MIND THAT HAVE BEEN MENTIONED. 4256 03:35:17,589 --> 03:35:22,060 IT WAS MENTIONED THE WAYS 4257 03:35:22,060 --> 03:35:23,828 INDIGENOUS SCHOLARS CAN BE 4258 03:35:23,828 --> 03:35:26,197 IMPACTED BY DOING WITH THEIR 4259 03:35:26,197 --> 03:35:26,531 COMMUNITIES. 4260 03:35:26,531 --> 03:35:29,267 I'VE SEEN WITH MY OWN TRIBE 4261 03:35:29,267 --> 03:35:30,535 INDIGENOUS SCHOLARS GOING 4262 03:35:30,535 --> 03:35:33,371 THROUGH THE PROCESS, MAINTAINING 4263 03:35:33,371 --> 03:35:35,273 RELATIONSHIPS AND IN 4264 03:35:35,273 --> 03:35:36,374 NON-INDIGENOUS SCHOLARS GETTING 4265 03:35:36,374 --> 03:35:37,776 A GRANT AND SAYING THEY'RE GOING 4266 03:35:37,776 --> 03:35:39,878 TO WORK WITH THE TRIBE AND THEN 4267 03:35:39,878 --> 03:35:41,513 THEY COME IN AND BECAUSE THEY 4268 03:35:41,513 --> 03:35:44,516 HAVE MONEY THE TRIBE IS KIND OF 4269 03:35:44,516 --> 03:35:47,285 ALMOST FORCED TO TAKE ON THESE 4270 03:35:47,285 --> 03:35:47,685 RESPONSIBILITIES. 4271 03:35:47,685 --> 03:35:50,522 THAT LEADS TO THE SECOND POINT 4272 03:35:50,522 --> 03:35:55,960 IS CAPACITY BUILDING IS THAT 4273 03:35:55,960 --> 03:36:01,900 TRIBES WET -- HAVE GOTTEN FORCED 4274 03:36:01,900 --> 03:36:07,372 TO TAKING ON GRANTS WITHOUT THE 4275 03:36:07,372 --> 03:36:11,276 CAPACITY TO EXECUTE THEM. 4276 03:36:11,276 --> 03:36:16,214 SOME SCHOLARS WHO MAY NOT BE 4277 03:36:16,214 --> 03:36:19,951 TRAINED IN THE RELATIONSHIP 4278 03:36:19,951 --> 03:36:25,123 INDIGENOUS OR NOT LOOK AT THE 4279 03:36:25,123 --> 03:36:27,225 CO-DEVELOPMENT OR EXECUTION WITH 4280 03:36:27,225 --> 03:36:29,027 THE SIZE OF THE BUDGET AND IF 4281 03:36:29,027 --> 03:36:32,530 THE TRIBE HAS A LARGE BUDGET 4282 03:36:32,530 --> 03:36:35,333 THEN THEY CAN HAVE EQUAL 4283 03:36:35,333 --> 03:36:36,935 DECISION MAKING WHERE THEY DON'T 4284 03:36:36,935 --> 03:36:39,637 HAVE THE CAPACITY TO DO THOSE 4285 03:36:39,637 --> 03:36:43,308 THINGS WHERE THE TRIBES SHOULD 4286 03:36:43,308 --> 03:36:44,542 HAVE EQUAL DECISION MAKING 4287 03:36:44,542 --> 03:36:45,643 REGARDLESS OF THE SIZE OF THE 4288 03:36:45,643 --> 03:36:46,678 BUDGET AND THEY'RE DOING THE 4289 03:36:46,678 --> 03:36:57,088 EXECUTION ITSELF OR NOT. 4290 03:36:57,722 --> 03:36:58,523 >> OKAY. 4291 03:36:58,523 --> 03:37:00,024 WE WANTED TO OPEN IT UP FOR 4292 03:37:00,024 --> 03:37:01,459 COMMENTS FROM THE PANEL. 4293 03:37:01,459 --> 03:37:02,894 I APPRECIATE YOUR RESPONSES SO 4294 03:37:02,894 --> 03:37:03,895 FAR AND STARTED A GREAT 4295 03:37:03,895 --> 03:37:04,963 CONVERSATION ON WHAT CONSENT 4296 03:37:04,963 --> 03:37:06,564 LOOKS LIKE AND WHAT THESE 4297 03:37:06,564 --> 03:37:07,832 POLICIES COULD LOOK LIKE AND 4298 03:37:07,832 --> 03:37:09,400 SOME BEST PRACTICES BUT BEFORE 4299 03:37:09,400 --> 03:37:11,936 WE OPEN IT UP FOR ANY QUESTIONS 4300 03:37:11,936 --> 03:37:14,539 FROM THE REST OF THE GROUP, DO 4301 03:37:14,539 --> 03:37:15,974 YOU HAVE STATEMENTS OR FINAL 4302 03:37:15,974 --> 03:37:26,151 THOUGHTS? 4303 03:37:27,919 --> 03:37:27,986 4304 03:37:27,986 --> 03:37:29,420 >> I HAVE A THOUGHT. 4305 03:37:29,420 --> 03:37:30,822 IT'S HALF FORMED SO HOPEFULLY IT 4306 03:37:30,822 --> 03:37:31,956 CAN GENERATE MORE THOUGHT AND 4307 03:37:31,956 --> 03:37:33,391 DISCUSSION. 4308 03:37:33,391 --> 03:37:38,429 IN PARTICULAR THINKING ABOUT THE 4309 03:37:38,429 --> 03:37:40,965 DIFFICULTIES AROUND WHOLE 4310 03:37:40,965 --> 03:37:42,066 INFORMED CONSENT THAT GO BEYOND 4311 03:37:42,066 --> 03:37:44,502 INDIGENOUS UNT XHOOS. 4312 03:37:44,502 --> 03:37:50,808 AS -- COMMUNITIES AND SOMETIMES 4313 03:37:50,808 --> 03:37:52,544 IT TAKES A LONG TIME TO GET TO 4314 03:37:52,544 --> 03:37:55,947 INFORMED CONSENT FOR THOSE WHO 4315 03:37:55,947 --> 03:37:57,882 DISAPPOINT UNDERSTAND NEURO 4316 03:37:57,882 --> 03:37:59,284 IMAGING AND HOW DATA WILL GET 4317 03:37:59,284 --> 03:38:01,119 STORED AND THOSE CONVERSATIONS 4318 03:38:01,119 --> 03:38:05,823 TAKE A LONG TIME IN ADDITION TO 4319 03:38:05,823 --> 03:38:07,559 THE IDEA OF STORING DATA 4320 03:38:07,559 --> 03:38:10,862 LONG-TERM IN THE LARGE DATA 4321 03:38:10,862 --> 03:38:14,532 REPOSITORIES AND HOW SOMEHOW WE 4322 03:38:14,532 --> 03:38:16,467 DEFINED SOMETIMES BIO SPECIMENS 4323 03:38:16,467 --> 03:38:19,571 AS NON-HUMAN SUBJECTS DATA 4324 03:38:19,571 --> 03:38:20,939 DOESN'T COMPUTE IN MY MIND. 4325 03:38:20,939 --> 03:38:23,441 THIS IS NOT IDENTIFIABLE DATA 4326 03:38:23,441 --> 03:38:29,147 THOUGH IT'S POSSIBLY THE MOST 4327 03:38:29,147 --> 03:38:33,084 IDENTIFIABLE DATA. 4328 03:38:33,084 --> 03:38:41,759 THOSE ISSUES ARE LARGER THAN 4329 03:38:41,759 --> 03:38:43,228 DATA FOR PEOPLE IN RESEARCH AND 4330 03:38:43,228 --> 03:38:45,830 THERE'S A DYNAMIC WHERE THE 4331 03:38:45,830 --> 03:38:47,265 ATTENTION WE'RE PAYING TO THIS 4332 03:38:47,265 --> 03:38:48,433 MAY GIVE LARGER CONSIDERATIONS 4333 03:38:48,433 --> 03:38:51,970 TO SOME OF THESE DYNAMICS WHERE 4334 03:38:51,970 --> 03:38:55,306 PERHAPS WE AS INDIGENOUS PEOPLE 4335 03:38:55,306 --> 03:38:56,541 OR PEOPLE WORKING IN INDIGENOUS 4336 03:38:56,541 --> 03:38:58,576 COMMUNITIES MAY HAVE DIFFERENT 4337 03:38:58,576 --> 03:39:03,948 IDEALS THAT GO BEYOND WHAT 4338 03:39:03,948 --> 03:39:09,053 TRADITIONAL OR CONVENTIONAL NIH 4339 03:39:09,053 --> 03:39:10,755 WISDOM MAY BE AROUND INFORMED 4340 03:39:10,755 --> 03:39:13,925 CONSENT AND IF IT'S MORE FAR 4341 03:39:13,925 --> 03:39:14,559 REACHING IT SHOULD BE CONSIDERED 4342 03:39:14,559 --> 03:39:24,702 AS WELL. 4343 03:39:30,275 --> 03:39:32,243 >> I THINK WE CAN THINK OF IT AS 4344 03:39:32,243 --> 03:39:33,444 A FUNDAMENTAL RIGHT OF 4345 03:39:33,444 --> 03:39:43,988 INDIGENOUS PEOPLES AND NATIONS. 4346 03:39:44,889 --> 03:39:48,960 PEOPLE USE THE TERM SOVEREIGNTY 4347 03:39:48,960 --> 03:39:52,463 I USE SELF-DETERMINATION AS AN 4348 03:39:52,463 --> 03:39:53,631 INTERNATIONAL RIGHT COVERING ALL 4349 03:39:53,631 --> 03:39:58,770 PEOPLES AND NATIONS. 4350 03:39:58,770 --> 03:40:03,675 THE ISSUE AROUND FPIC I BELIEVE 4351 03:40:03,675 --> 03:40:05,510 IS WE GET A LIST OF QUESTIONS 4352 03:40:05,510 --> 03:40:07,979 YOU TALKED ABOUT NON-HUMAN 4353 03:40:07,979 --> 03:40:13,484 MATERIALS AND THOSE KINDS OF 4354 03:40:13,484 --> 03:40:13,718 THINGS. 4355 03:40:13,718 --> 03:40:21,559 AT THE INTERNATIONAL LEVEL 4356 03:40:21,559 --> 03:40:22,593 STATES INCLUDING THE UNITED 4357 03:40:22,593 --> 03:40:25,997 STATES DON'T CONSIDER INDIGENOUS 4358 03:40:25,997 --> 03:40:27,198 PEOPLES AS HAVING THE 4359 03:40:27,198 --> 03:40:29,334 SELF-DETERMINATION AND IF YOU 4360 03:40:29,334 --> 03:40:32,537 READ THE DEPARTMENT OF STATE'S 4361 03:40:32,537 --> 03:40:37,342 10 PAGE MEMO ON 4362 03:40:37,342 --> 03:40:41,879 SELF-DETERMINATION AND WHEN THEY 4363 03:40:41,879 --> 03:40:43,748 SUPPORT THE RIGHTS OF U.N. 4364 03:40:43,748 --> 03:40:44,749 PRINCIPLES PEOPLE HAVE A 4365 03:40:44,749 --> 03:40:46,984 DIFFERENT TYPE OF 4366 03:40:46,984 --> 03:40:48,753 SELF-DETERMINATION BUT NOT THE 4367 03:40:48,753 --> 03:40:49,821 INTERNATIONALLY KNOWN STANDARD 4368 03:40:49,821 --> 03:40:50,588 AS SELF-DETERMINATION. 4369 03:40:50,588 --> 03:40:53,958 TO ME I THINK WE HAVE A 4370 03:40:53,958 --> 03:40:57,862 CHALLENGE BECAUSE WHAT WE'RE 4371 03:40:57,862 --> 03:41:00,531 TALKING ABOUT IS WHEN AN 4372 03:41:00,531 --> 03:41:02,400 INDIGENOUS PEOPLE ASSERT THEIR 4373 03:41:02,400 --> 03:41:07,972 FULL RIGHT OF SELF-DETERMINATION 4374 03:41:07,972 --> 03:41:18,316 OVER RESEARCH AND WHEN IT COMES 4375 03:41:18,316 --> 03:41:18,983 PUSH TO SHOVE. 4376 03:41:18,983 --> 03:41:21,886 SO IF YOU'RE NOT PROTECTING YOUR 4377 03:41:21,886 --> 03:41:26,491 RIGHT OR KNOWLEDGE OR BIOLOGICAL 4378 03:41:26,491 --> 03:41:28,426 MATERIAL USING WESTERN 4379 03:41:28,426 --> 03:41:28,993 INTELLECTUAL PROPERTY LAW, 4380 03:41:28,993 --> 03:41:30,495 WHAT'S YOUR BACK UP? 4381 03:41:30,495 --> 03:41:33,898 IF YOU'RE TRYING TO PROTECT YOUR 4382 03:41:33,898 --> 03:41:37,034 RIGHTS UNDER THE UMBRELLA OF 4383 03:41:37,034 --> 03:41:38,469 SELF-DETERMINATION SOVEREIGNTY 4384 03:41:38,469 --> 03:41:40,705 WILL IT PASS THE TEST? 4385 03:41:40,705 --> 03:41:43,574 WILL IT PASS THE JURISDICTIONAL 4386 03:41:43,574 --> 03:41:43,875 LEGAL TEST? 4387 03:41:43,875 --> 03:41:48,212 I DON'T HAVE THE ANSWER TO THAT 4388 03:41:48,212 --> 03:41:51,783 JUDGING BY THE POSITION OF 4389 03:41:51,783 --> 03:41:53,718 SELF-DETERMINATION I THINK WE 4390 03:41:53,718 --> 03:41:55,486 MIGHT LOSE ON THAT ARGUMENT. 4391 03:41:55,486 --> 03:41:57,955 ON THE OTHER HAND, I THINK IT'S 4392 03:41:57,955 --> 03:41:59,791 OUR ONLY POPULATION AS 4393 03:41:59,791 --> 03:42:01,259 INDIGENOUS PEOPLES IS TO STAND 4394 03:42:01,259 --> 03:42:02,560 FIRM ON THE RIGHT OF 4395 03:42:02,560 --> 03:42:03,961 SELF-DETERMINE NATION AND TO 4396 03:42:03,961 --> 03:42:06,030 PROTECT EVERYTHING THAT'S OURS 4397 03:42:06,030 --> 03:42:10,668 UNDER OUR OWN RULES AND LAWS AND 4398 03:42:10,668 --> 03:42:12,570 SO ON. 4399 03:42:12,570 --> 03:42:15,940 SO I JUST THINK THAT THAT'S 4400 03:42:15,940 --> 03:42:20,545 REALLY REALLY IMPORTANT AND THE 4401 03:42:20,545 --> 03:42:23,414 PUSH IS ALWAYS GOING TO BE TO 4402 03:42:23,414 --> 03:42:26,617 FORCE TRIBES TO USE WESTERN 4403 03:42:26,617 --> 03:42:29,086 INTELLECTUAL PROPERTY, TO USE 4404 03:42:29,086 --> 03:42:33,224 PATENTS AND COPYRIGHT AND SO ON. 4405 03:42:33,224 --> 03:42:40,665 BUT THOSE THINGS COME WITH AN 4406 03:42:40,665 --> 03:42:42,700 EXPIRATION RATE AND WHAT HAPPENS 4407 03:42:42,700 --> 03:42:43,835 WHEN THE PROTECTIONS EXPIRE GOES 4408 03:42:43,835 --> 03:42:46,871 INTO PUBLIC DOMAIN AND NO LONGER 4409 03:42:46,871 --> 03:42:48,639 BELONGS TO ANYBODY SO IT'S 4410 03:42:48,639 --> 03:42:49,740 AVAILABLE AS FREE AND OPEN USE. 4411 03:42:49,740 --> 03:42:51,342 THAT'S A DOUBLE-EDGED SWORD. 4412 03:42:51,342 --> 03:42:55,947 I DON'T KNOW IF WE WANT IT USE 4413 03:42:55,947 --> 03:43:06,057 THAT. 4414 03:43:11,863 --> 03:43:18,135 I DON'T KNOW HOW WE USE THE DATA 4415 03:43:18,135 --> 03:43:28,379 DOWN THE LINE. 4416 03:43:28,946 --> 03:43:31,115 >> DOES ANYONE HAVE QUESTIONS 4417 03:43:31,115 --> 03:43:32,316 FOR THE PANELISTS? 4418 03:43:32,316 --> 03:43:34,085 >> I LIKE WHAT THEY'RE TRYING TO 4419 03:43:34,085 --> 03:43:36,053 DO AT CHICKASAW AND THE PROBLEM 4420 03:43:36,053 --> 03:43:39,357 OF HAVING DEDICATED STAFF TO 4421 03:43:39,357 --> 03:43:42,760 THESE KINDS OF ISSUES. 4422 03:43:42,760 --> 03:43:44,762 AS DATA GETS BIGGER OR RESEARCH 4423 03:43:44,762 --> 03:43:47,398 QUESTIONS GET MORE EXPANSIVE AND 4424 03:43:47,398 --> 03:43:50,234 YOUR DATA SET GETS INTO THIS 4425 03:43:50,234 --> 03:43:51,936 DATA SET OR IS USED FOR QUALITY 4426 03:43:51,936 --> 03:43:55,306 CONTROL OR LAWSUIT OR WHATEVER 4427 03:43:55,306 --> 03:43:58,142 YOU CAN'T LOGISTICALLY IN AN 4428 03:43:58,142 --> 03:44:01,445 EFFICIENT MANNER TELL AN 4429 03:44:01,445 --> 03:44:05,416 INDIVIDUAL HOW THEIR DATA IS 4430 03:44:05,416 --> 03:44:09,287 BEING USED AND OUR PRESIDENT OF 4431 03:44:09,287 --> 03:44:12,924 DATA SAYS THERE ISN'T INDIGENOUS 4432 03:44:12,924 --> 03:44:18,729 DATA SOVEREIGNTY OR JUST 4433 03:44:18,729 --> 03:44:22,099 SOVEREIGNTY AND 4434 03:44:22,099 --> 03:44:23,501 SELF-DETERMINATION AND THE 4435 03:44:23,501 --> 03:44:24,769 ABILITY TO DO THOSE THINGS. 4436 03:44:24,769 --> 03:44:30,808 I APPRECIATE DEBORAH HARRY'S 4437 03:44:30,808 --> 03:44:32,543 COMMENTS WHETHER TRIBES ARE 4438 03:44:32,543 --> 03:44:34,412 TRULY SOVEREIGN BECAUSE I HEAR 4439 03:44:34,412 --> 03:44:39,517 DIFFERENT ASPECTS WHICH IS 4440 03:44:39,517 --> 03:44:42,286 YOU'RE NOT REALLY SOVEREIGN 4441 03:44:42,286 --> 03:44:52,630 WHICH IS AN INSULT. 4442 03:45:04,008 --> 03:45:07,244 THE IDEA THERE'S AN ALTRUISTIC 4443 03:45:07,244 --> 03:45:09,447 REASON TO COLLECT THIS DATA IS 4444 03:45:09,447 --> 03:45:11,515 DIFFICULT TO DEMONSTRATE AND 4445 03:45:11,515 --> 03:45:14,752 THEY DIDN'T CARE BEFORE A 4446 03:45:14,752 --> 03:45:17,822 CERTAIN TIME AND NOW THEY WANT 4447 03:45:17,822 --> 03:45:20,424 THE DATA AND IT CAN BE USED BY 4448 03:45:20,424 --> 03:45:21,993 SURVEILLANCE OR 23 AND ME OR 4449 03:45:21,993 --> 03:45:22,259 WHATEVER. 4450 03:45:22,259 --> 03:45:24,161 AND IN THAT CONTEXT BY 4451 03:45:24,161 --> 03:45:24,862 PRIORITIZING INDIVIDUAL CONCEPT 4452 03:45:24,862 --> 03:45:27,665 OVER TRIBAL CONSENT YOU PUT THE 4453 03:45:27,665 --> 03:45:31,736 TRIBE CITIZENS IN OPPOSITION TO 4454 03:45:31,736 --> 03:45:32,203 THEIR OWN GOVERNMENT. 4455 03:45:32,203 --> 03:45:33,804 IF YOU'RE LIVING IN A TRIBAL 4456 03:45:33,804 --> 03:45:42,780 COMMUNITY THAT'S WRONG. 4457 03:45:42,780 --> 03:45:48,052 WROOUR -- YOU'RE SAYING IN THIS 4458 03:45:48,052 --> 03:45:48,819 PARTICULAR PROJECT BECAUSE THE 4459 03:45:48,819 --> 03:45:50,488 TRIBE IS NOT LOOKING OUT FOR 4460 03:45:50,488 --> 03:45:51,555 YOU. 4461 03:45:51,555 --> 03:45:59,363 I'VE HAD PEOPLE TELL ME HOW DARE 4462 03:45:59,363 --> 03:46:01,465 THEY AND BY PRIORITIZING THE 4463 03:46:01,465 --> 03:46:02,933 ETHICS BECAUSE I HEARD THIS TOO, 4464 03:46:02,933 --> 03:46:05,836 THE DATA'S ALREADY COLLECTED. 4465 03:46:05,836 --> 03:46:07,038 BY NOT PUTTING INTO PRACTICE OR 4466 03:46:07,038 --> 03:46:09,173 SHARING OR UTILIZING THE DATA 4467 03:46:09,173 --> 03:46:10,408 YOU'RE ETHICALLY HURTING YOUR 4468 03:46:10,408 --> 03:46:11,475 OWN TRIBE. 4469 03:46:11,475 --> 03:46:16,981 THEY FRAME THESE THINGS IN VERY 4470 03:46:16,981 --> 03:46:21,318 CONTENTIOUS AND OPPOSITIONAL WAY 4471 03:46:21,318 --> 03:46:24,655 TO SELF-DETERMINATION AND HAVE 4472 03:46:24,655 --> 03:46:26,524 TO KEEP THEM IN 4473 03:46:26,524 --> 03:46:27,958 SELF-DETERMINATION IN TALKING 4474 03:46:27,958 --> 03:46:30,461 ABOUT PRE AND PRIOR INFORMED 4475 03:46:30,461 --> 03:46:31,962 CONSENT LIKE BOBBY SAID YOU HAVE 4476 03:46:31,962 --> 03:46:33,464 TO WEIGH THAT AGAINST THE 4477 03:46:33,464 --> 03:46:36,200 WELFARE OF THE WHOLE GROUP. 4478 03:46:36,200 --> 03:46:46,377 THANK YOU. 4479 03:46:50,281 --> 03:46:50,881 >> INFORMED CONSENT FORMS 4480 03:46:50,881 --> 03:46:53,150 SWITCHED FROM THINKING ABOUT THE 4481 03:46:53,150 --> 03:46:55,119 WELFARE OF PARTICIPANTS AND 4482 03:46:55,119 --> 03:46:57,888 SWITCHED TO A LEGAL CONTRACTUAL 4483 03:46:57,888 --> 03:46:59,857 DOCUMENT. 4484 03:46:59,857 --> 03:47:01,959 I WANT TO SHARE OUR BRIEF 4485 03:47:01,959 --> 03:47:03,527 SCENARIO BECAUSE IT HIGHLIGHTS 4486 03:47:03,527 --> 03:47:04,528 SOME CHALLENGES THAT HAVE BEEN 4487 03:47:04,528 --> 03:47:08,299 RAISED FROM A SINGLE IRB MANDATE 4488 03:47:08,299 --> 03:47:11,702 AND THE LACK OF RECOGNITION OF 4489 03:47:11,702 --> 03:47:12,603 AUTHORITIES AND THEIR OWN 4490 03:47:12,603 --> 03:47:13,204 INFORMED CONSENT LANGUAGE. 4491 03:47:13,204 --> 03:47:17,108 A NUMBER OF YEARS AGO NOT TOO 4492 03:47:17,108 --> 03:47:20,778 LONG AGO I CREATED A STUDY WITH 4493 03:47:20,778 --> 03:47:21,812 INTERVIEW AND APPROACHES. 4494 03:47:21,812 --> 03:47:25,483 BECAUSE WE HAD TO PARTNER WITH A 4495 03:47:25,483 --> 03:47:33,557 MEDICAL SCHOOL OUR SIMPLE 1-2 4496 03:47:33,557 --> 03:47:35,593 PAGE INFORMED CONSENT BALLOONED 4497 03:47:35,593 --> 03:47:40,865 TO 10 PAGES AND HAD CLINICAL 4498 03:47:40,865 --> 03:47:45,970 JARGON AND THE IRB REFUSED TO 4499 03:47:45,970 --> 03:47:47,938 CEDE AUTHORITY TO TRIBAL IRBs 4500 03:47:47,938 --> 03:47:49,974 STEAMROLLED THE TRIBAL RESEARCH 4501 03:47:49,974 --> 03:47:53,344 REVIEW PROCESSES AND WE ALSO 4502 03:47:53,344 --> 03:47:55,780 HAVE ACKNOWLEDGED NOT ALL 4503 03:47:55,780 --> 03:47:57,882 PROCESSES ARE IDENTICAL. 4504 03:47:57,882 --> 03:47:59,617 THERE'S HETEROGENEITY AND IF 4505 03:47:59,617 --> 03:48:02,987 IT'S NOT A FORMAL IRB WITH 4506 03:48:02,987 --> 03:48:05,489 FEDERAL ASSURANCE TIED TO IT IT 4507 03:48:05,489 --> 03:48:06,724 GIVES AUTHORITY TO UNIVERSITIES 4508 03:48:06,724 --> 03:48:11,729 TO NOT ACKNOWLEDGE IT. 4509 03:48:11,729 --> 03:48:20,304 SO THIS IS WHERE NIH CAN 4510 03:48:20,304 --> 03:48:22,540 RE-EDUCATE BECAUSE WE HAD TO 4511 03:48:22,540 --> 03:48:25,743 FIGHT WITH LAWYERS TO UPHOLD 4512 03:48:25,743 --> 03:48:26,544 TRIBAL SOVEREIGNTY. 4513 03:48:26,544 --> 03:48:33,751 I TEACH A PAPER TO A CLASS THAT 4514 03:48:33,751 --> 03:48:35,953 RESEARCH PARTICIPANTS WERE 4515 03:48:35,953 --> 03:48:37,655 UNAWARE OF ADDITIONAL RISK WHEN 4516 03:48:37,655 --> 03:48:38,522 PARTICIPATING AND 70% DIDN'T 4517 03:48:38,522 --> 03:48:39,957 UNDERSTAND THE FULL CONTEXT OF 4518 03:48:39,957 --> 03:48:41,492 THE LANGUAGE. 4519 03:48:41,492 --> 03:48:43,160 NOW, WE'RE TALKING ABOUT 4520 03:48:43,160 --> 03:48:44,929 INDIGENOUS COMMUNITIES FOR WHOM 4521 03:48:44,929 --> 03:48:46,397 ENGLISH IS NOT THE FIRST 4522 03:48:46,397 --> 03:48:49,934 LANGUAGE AND THIS IS ALSO 4523 03:48:49,934 --> 03:48:53,637 DOCUMENTED THAT MINORITIZED 4524 03:48:53,637 --> 03:48:54,805 COMMUNITY MEMBERS WILL TRUST 4525 03:48:54,805 --> 03:48:56,540 SOMEONE IN A WHITE COAT AND 4526 03:48:56,540 --> 03:48:59,443 CAN'T DIFFERENTIATE RISKS FOR 4527 03:48:59,443 --> 03:49:00,177 BEING A RESEARCH STUDY 4528 03:49:00,177 --> 03:49:03,347 PARTICIPANT VERSUS CONCEPT TO 4529 03:49:03,347 --> 03:49:03,814 CARE. 4530 03:49:03,814 --> 03:49:07,051 THESE ARE POWER IMBALANCES 4531 03:49:07,051 --> 03:49:09,019 ENTRENCHED IF YOU'LL PERMIT ME 4532 03:49:09,019 --> 03:49:11,088 ONE MORE IN RESPONSE TO JOE'S 4533 03:49:11,088 --> 03:49:11,322 COMMENT. 4534 03:49:11,322 --> 03:49:15,059 THERE IS AN ISSUE WHEN WE START 4535 03:49:15,059 --> 03:49:15,726 TREATING INFORMED CONSENT FORMS 4536 03:49:15,726 --> 03:49:18,629 AS CONTRACTUAL DOCUMENTS AND 4537 03:49:18,629 --> 03:49:21,131 FORGETTING THERE'S HARMS 4538 03:49:21,131 --> 03:49:23,934 GENERATED AT THE COMMUNITY LEVEL 4539 03:49:23,934 --> 03:49:24,335 TOO. 4540 03:49:24,335 --> 03:49:26,537 LANGUAGE MAY STATE SOMETHING 4541 03:49:26,537 --> 03:49:28,839 LIKE BENEFITS MAY BE DIRECTLY TO 4542 03:49:28,839 --> 03:49:30,140 THE INDIVIDUAL AND GENERAL 4543 03:49:30,140 --> 03:49:31,942 ADVANCES THAT MAY BENEFIT I 4544 03:49:31,942 --> 03:49:34,411 DON'T KNOW THE GREATER GOOD, ALL 4545 03:49:34,411 --> 03:49:38,482 OF HUMAN KIND, WORLD PEACE BUT 4546 03:49:38,482 --> 03:49:40,618 THERE MAY BE A SMALL CHANCE TO 4547 03:49:40,618 --> 03:49:42,353 YOUR PERSPECTIVE COMMUNITIES AND 4548 03:49:42,353 --> 03:49:45,189 SOMETIMES A COLONIAL IRB MAY BE 4549 03:49:45,189 --> 03:49:47,791 OVERLY EMPOWERED TO USE THAT 4550 03:49:47,791 --> 03:49:53,163 LANGUAGE TO PUSH FOR THE 4551 03:49:53,163 --> 03:50:00,237 APPROVAL OF RESEARCH THAT MAY BE 4552 03:50:00,237 --> 03:50:02,273 STIGMATIZING WITHOUT THE 4553 03:50:02,273 --> 03:50:03,574 CONSULTATION OF COMMUNITY AND 4554 03:50:03,574 --> 03:50:06,076 THAT'S A PERVERSION BY WHICH 4555 03:50:06,076 --> 03:50:08,579 IRBs ARE CREATED AND IT HAS 4556 03:50:08,579 --> 03:50:11,482 SHIFTED TO THIS LEGAL PROTECTION 4557 03:50:11,482 --> 03:50:13,284 FOR FEDERALLY SPONSORED 4558 03:50:13,284 --> 03:50:13,817 RESEARCH. 4559 03:50:13,817 --> 03:50:17,588 ONE QUESTION THOUGH, WE KEEP 4560 03:50:17,588 --> 03:50:18,622 TALKING ABOUT BROAD INFORMED 4561 03:50:18,622 --> 03:50:22,393 CONSENT AND WE HAVE SEEN 4562 03:50:22,393 --> 03:50:24,361 ESPECIALLY WITH UNIVERSITY 4563 03:50:24,361 --> 03:50:25,729 PROJECTS AND THE INSTITUTION AT 4564 03:50:25,729 --> 03:50:26,764 ARIZONA STATE UNIVERSITY AND THE 4565 03:50:26,764 --> 03:50:29,867 ARIZONA BOARD OF REGENTS WHICH 4566 03:50:29,867 --> 03:50:32,569 WAS SUED BY THE TRIBE THAT WE 4567 03:50:32,569 --> 03:50:35,806 MOVED FROM BROAD CONSENT TO 4568 03:50:35,806 --> 03:50:37,074 THINKING ABOUT MORE TAILORED 4569 03:50:37,074 --> 03:50:39,944 FORM OF CONSENTS AND WHEN WE 4570 03:50:39,944 --> 03:50:41,578 START COLLECTING DATA WENT BACK 4571 03:50:41,578 --> 03:50:42,579 TO BROAD CONCEPT. 4572 03:50:42,579 --> 03:50:43,981 I LOOKED AT OUR LESSONS IN THE 4573 03:50:43,981 --> 03:50:46,417 PAST AND WE KIND OF FORGOT. 4574 03:50:46,417 --> 03:50:48,319 THE OTHER THING I THINK IS 4575 03:50:48,319 --> 03:50:50,554 INTERESTING IS I WORK WITH 4576 03:50:50,554 --> 03:50:53,357 RESEARCHERS ALL THE TIME WHO 4577 03:50:53,357 --> 03:50:55,960 KEEP CONSTANTLY STATING WE NEED 4578 03:50:55,960 --> 03:51:02,866 BROAD CONSENT WE NEED TO 4579 03:51:02,866 --> 03:51:05,903 CONSIDER DEIDENTIFIED DATA AND 4580 03:51:05,903 --> 03:51:07,571 ALL THE RESEARCHERS NEED TO BE 4581 03:51:07,571 --> 03:51:11,408 ABLE TO PULL IT FOR ANALYSES. 4582 03:51:11,408 --> 03:51:12,643 WE LIVE IN A MACHINE LEARNING 4583 03:51:12,643 --> 03:51:12,910 ERA. 4584 03:51:12,910 --> 03:51:15,245 WE HAVE TECHNOLOGY TO PREVENT 4585 03:51:15,245 --> 03:51:15,946 EVERYONE HAVING ACCESS TO 4586 03:51:15,946 --> 03:51:18,882 EVERYTHING IN A PUBLIC DOMAIN. 4587 03:51:18,882 --> 03:51:21,051 WHY AREN'T WE PUSHING FOR A MORE 4588 03:51:21,051 --> 03:51:22,786 ADAPTIVE FORM OF CONSENT OR 4589 03:51:22,786 --> 03:51:24,722 PUSHING MORE FOR DYNAMIC CONCEPT 4590 03:51:24,722 --> 03:51:29,293 OR BLOCK CHAINING OR FEDERATED 4591 03:51:29,293 --> 03:51:30,194 APPROACHES TO GIVE LOCAL 4592 03:51:30,194 --> 03:51:34,665 GOVERNANCE TO UNT COMMUNITIES TO 4593 03:51:34,665 --> 03:51:35,966 TAILOR THESE APPROACHES AND 4594 03:51:35,966 --> 03:51:38,469 THAT'S THE REALITY I'D LIKE TO 4595 03:51:38,469 --> 03:51:39,903 SEE AND SEE INDIGENOUS PEOPLE 4596 03:51:39,903 --> 03:51:41,405 AND COMMUNITIES SELF-DETERMINE 4597 03:51:41,405 --> 03:51:44,008 THAT USE OF THE TECHNOLOGIES IN 4598 03:51:44,008 --> 03:51:46,043 THAT WAY. 4599 03:51:46,043 --> 03:51:52,216 >> THANK YOU, ANNIE. 4600 03:51:52,216 --> 03:52:00,824 >> BUILDING OFF KRYSTAL'S 4601 03:52:00,824 --> 03:52:02,459 COMMENT AND NOT DOING HARM AND 4602 03:52:02,459 --> 03:52:03,894 WE'VE SEEN PRESENTING LEGAL 4603 03:52:03,894 --> 03:52:08,799 DOCUMENTS TEND TO BE A DR 4604 03:52:08,799 --> 03:52:11,935 TRIGGERING ACT AND TRAUMATIC TO 4605 03:52:11,935 --> 03:52:13,637 COMMUNITIES WHO HAVE VERY MUCH 4606 03:52:13,637 --> 03:52:16,073 HISTORICAL CONSEQUENCES THAT 4607 03:52:16,073 --> 03:52:16,974 HAVE BEEN SUFFERED. 4608 03:52:16,974 --> 03:52:19,910 AND SO IT REALLY DOES REQUIRE A 4609 03:52:19,910 --> 03:52:21,311 LOT OF TALKING THROUGH THE 4610 03:52:21,311 --> 03:52:22,346 PROCESS AND WHAT YOU ARE 4611 03:52:22,346 --> 03:52:24,314 AGREEING TO OR NOT AGREEING TO 4612 03:52:24,314 --> 03:52:26,150 OR SIGNING AWAY AND THAT IS 4613 03:52:26,150 --> 03:52:30,587 SOMETHING THAT IS AT THE 4614 03:52:30,587 --> 03:52:32,623 INDIVIDUAL LEVEL AND FALLS ON 4615 03:52:32,623 --> 03:52:34,525 THE RESEARCHER AND ALIGNED WITH 4616 03:52:34,525 --> 03:52:35,726 THE BIGGER ISSUE OF WHAT WE'RE 4617 03:52:35,726 --> 03:52:40,764 DOING WHEN WE PUT CONTRACTS IN 4618 03:52:40,764 --> 03:52:42,566 FRONT OF PEOPLE WHO ARE ALL 4619 03:52:42,566 --> 03:52:43,801 RIGHT HAVING A LOT OF STRESSORS 4620 03:52:43,801 --> 03:52:45,069 AND SUFFERING AND NOT DOING OUR 4621 03:52:45,069 --> 03:52:47,938 DUE DILIGENCE AS INSTITUTIONS TO 4622 03:52:47,938 --> 03:52:51,942 VET PROPERLY SOME OF THE 4623 03:52:51,942 --> 03:52:54,278 PROCESSES SO WE'RE NOT I MEAN 4624 03:52:54,278 --> 03:52:57,681 THIS IS A BIGGER PICTURE ISSUE 4625 03:52:57,681 --> 03:52:59,283 AND PUTTING STRAIN ON 4626 03:52:59,283 --> 03:53:00,684 COMMUNITIES THAT FRANKLY CANNOT 4627 03:53:00,684 --> 03:53:02,553 SUPPORT THE DEMANDS AND 4628 03:53:02,553 --> 03:53:03,387 REQUIREMENTS WE'RE ASKING OF 4629 03:53:03,387 --> 03:53:06,690 THEM JUST TO HAVE ACCESS TO 4630 03:53:06,690 --> 03:53:06,924 SCIENCE. 4631 03:53:06,924 --> 03:53:09,793 THAT'S FUNDAMENTALLY A PROBLEM 4632 03:53:09,793 --> 03:53:11,395 AND IT'S AGAIN COMES TO THE 4633 03:53:11,395 --> 03:53:13,163 CONCENTRATION OF POWER WITHIN 4634 03:53:13,163 --> 03:53:15,365 PLACES THAT DON'T ALWAYS HAVE 4635 03:53:15,365 --> 03:53:19,770 THE CONNECTIVITY TO KNOW THIS IS 4636 03:53:19,770 --> 03:53:21,505 PERPETUATING A PROCESS ENACTED 4637 03:53:21,505 --> 03:53:23,640 WHEN PEOPLE CAME HERE AND 4638 03:53:23,640 --> 03:53:24,541 STARTED TO KILL US. 4639 03:53:24,541 --> 03:53:26,210 NOW WE'RE IN THE SPACE AND THIS 4640 03:53:26,210 --> 03:53:29,079 IS ONE OF OUR ELDERS WHO SAID 4641 03:53:29,079 --> 03:53:29,279 THIS. 4642 03:53:29,279 --> 03:53:30,314 WE'RE FEELING LIKE WE'RE HAVING 4643 03:53:30,314 --> 03:53:32,449 TO PROTECT OURSELVES TO DEATH. 4644 03:53:32,449 --> 03:53:34,685 AND WE'RE PROTECTING OUR CULTURE 4645 03:53:34,685 --> 03:53:36,520 TO DEATH NOW. 4646 03:53:36,520 --> 03:53:38,455 THAT'S COMING FROM AN ELDER 4647 03:53:38,455 --> 03:53:39,957 TALKING ABOUT THE FACT THAT 4648 03:53:39,957 --> 03:53:41,959 WE'RE UNABLE TO ACCESS OUR 4649 03:53:41,959 --> 03:53:43,927 CULTURAL WAYS BECAUSE WE'RE SO 4650 03:53:43,927 --> 03:53:44,761 BUSY PROTECTING THAT INFORMATION 4651 03:53:44,761 --> 03:53:47,631 FROM OUTSIDE ENTITIES WHO HAVE 4652 03:53:47,631 --> 03:53:50,200 HISTORICALLY USED THAT AGAINST 4653 03:53:50,200 --> 03:53:50,367 US. 4654 03:53:50,367 --> 03:53:51,068 AND USED OUR INDIGENOUS 4655 03:53:51,068 --> 03:53:53,337 KNOWLEDGE IN MANY CAPACITIES TO 4656 03:53:53,337 --> 03:53:53,670 PROFIT FROM. 4657 03:53:53,670 --> 03:53:56,540 THERE'S SO MANY EXAMPLES OF THAT 4658 03:53:56,540 --> 03:54:03,046 ASPIRIN AND ALL THESE 4659 03:54:03,046 --> 03:54:04,815 MEDICATIONS. 4660 03:54:04,815 --> 03:54:07,985 PART OF WHY I STARTED TO WORK 4661 03:54:07,985 --> 03:54:10,754 WITH MY COMMUNITY BECAUSE IT'S 4662 03:54:10,754 --> 03:54:13,056 SO ONEROUS FOR NATIVE PEOPLE TO 4663 03:54:13,056 --> 03:54:18,028 TRY TO NAVIGATE THIS REGARDLESS 4664 03:54:18,028 --> 03:54:19,563 OF THEIR PERSPECTIVALITY AND THE 4665 03:54:19,563 --> 03:54:21,832 POWER DIFFERENTIAL BECAUSE OUR 4666 03:54:21,832 --> 03:54:23,133 UNIVERSITIES HAVE CAPITALIZED ON 4667 03:54:23,133 --> 03:54:27,938 THIS AND HIRE ATTORNEYS. 4668 03:54:27,938 --> 03:54:31,275 THEY LAWYER UP TO RECHARGE THEIR 4669 03:54:31,275 --> 03:54:32,943 FINANCIAL BATTERIES THROUGH OUR 4670 03:54:32,943 --> 03:54:33,210 SUFFERING. 4671 03:54:33,210 --> 03:54:35,379 I DON'T KNOW HOW MANY WAYS I 4672 03:54:35,379 --> 03:54:37,915 NEED TO SAY THAT BUT IS 4673 03:54:37,915 --> 03:54:39,483 FUNDAMENTALLY AN UNETHICAL 4674 03:54:39,483 --> 03:54:40,884 PROCESS WHEN WE HAVE PEOPLE NOT 4675 03:54:40,884 --> 03:54:43,954 BENEFITING FROM THE WORK WE'RE 4676 03:54:43,954 --> 03:54:54,064 DOING. 4677 03:55:07,177 --> 03:55:07,945 AND THAT'S SOMETHING WE SHOULD 4678 03:55:07,945 --> 03:55:10,080 ASK QUESTIONS ABOUT AND AS 4679 03:55:10,080 --> 03:55:11,181 NATIVE RESEARCHERS IT'S 4680 03:55:11,181 --> 03:55:11,982 DIFFERENT BECAUSE TYPICALLY WE 4681 03:55:11,982 --> 03:55:14,117 AREN'T THE ONES COMING IN WITH 4682 03:55:14,117 --> 03:55:15,552 THE FUNDED PROJECT TELLING 4683 03:55:15,552 --> 03:55:18,789 PEOPLE AFTER THE FACT IN A 4684 03:55:18,789 --> 03:55:19,723 COERCIVE FRANKLY WAY THEY HAVE 4685 03:55:19,723 --> 03:55:21,525 TO SIGN ON OR THEY DON'T GET 4686 03:55:21,525 --> 03:55:23,260 ACCESS TO THE MONEY WHICH IS 4687 03:55:23,260 --> 03:55:25,162 TYPICALLY WHAT'S HAPPENING. 4688 03:55:25,162 --> 03:55:26,897 NOT PEOPLE IN THE ROOM BUT AT 4689 03:55:26,897 --> 03:55:30,267 OUR INSTITUTION WE HAVE $83 4690 03:55:30,267 --> 03:55:30,834 MILLION COMING THROUGH OUR 4691 03:55:30,834 --> 03:55:33,237 CAMPUS AND A FRACTION OF THAT I 4692 03:55:33,237 --> 03:55:35,105 GUARANTEE YOU IS GOING TO OUR 4693 03:55:35,105 --> 03:55:35,772 COMMUNITIES. 4694 03:55:35,772 --> 03:55:36,940 IT'S CERTAINLY NOT GOING THROUGH 4695 03:55:36,940 --> 03:55:39,610 ME BECAUSE IT'S GOING THROUGH 4696 03:55:39,610 --> 03:55:42,346 PEOPLE WHO ARE WORKING THROUGH 4697 03:55:42,346 --> 03:55:43,947 PEOPLE TO HELP THE 4698 03:55:43,947 --> 03:55:48,752 NATIVE-AMERICAN WE'VE BEEN TOLD 4699 03:55:48,752 --> 03:55:50,187 TIME AND TIME BEEN AND HAS 4700 03:55:50,187 --> 03:55:52,556 DIMINISHED AND DEMEANED OUR 4701 03:55:52,556 --> 03:55:53,190 COMMUNITIES. 4702 03:55:53,190 --> 03:55:54,891 TO BE A PERPETUATION OF THAT 4703 03:55:54,891 --> 03:55:57,928 SAYING THIS IS THE PROCESS BY 4704 03:55:57,928 --> 03:55:59,963 WHICH YOU'RE GOING TO SIGN AWAY 4705 03:55:59,963 --> 03:56:02,566 YOUR RIGHTS IN PERPETUITY TO 4706 03:56:02,566 --> 03:56:04,835 YOUR DATA OR IS IT PROBLEMATIC? 4707 03:56:04,835 --> 03:56:06,970 IT COMES BACK TO THE FUNDAMENTAL 4708 03:56:06,970 --> 03:56:08,405 QUESTION I HAVE ANSWERED FOR 4709 03:56:08,405 --> 03:56:18,915 MYSELF BY LIKE NOT DOING THIS. 4710 03:56:23,747 --> 03:56:25,115 I KNOW YOU'VE TRIED TO DO THE 4711 03:56:25,115 --> 03:56:26,283 WORK IN A GOOD WAY AND THAT'S 4712 03:56:26,283 --> 03:56:27,751 DIFFICULT AND YOU GO HOME AT 4713 03:56:27,751 --> 03:56:28,853 NIGHT WORRYING ABOUT PEOPLE AND 4714 03:56:28,853 --> 03:56:31,021 YOU HAVE PEOPLE WHO CANNOT READ. 4715 03:56:31,021 --> 03:56:33,891 EVERY TIME I'VE DONE A STUDY 4716 03:56:33,891 --> 03:56:35,426 I'VE WORKED WITH PEOPLE WHO 4717 03:56:35,426 --> 03:56:38,629 CANNOT READ AND HAVE TO SIT WITH 4718 03:56:38,629 --> 03:56:39,463 THEM AND TALK THROUGH THE 4719 03:56:39,463 --> 03:56:41,031 INFORMED CONSENT. 4720 03:56:41,031 --> 03:56:42,299 THAT'S THE LEVEL SOMETIMES 4721 03:56:42,299 --> 03:56:43,767 THAT'S A DISCONNECT TO ME 4722 03:56:43,767 --> 03:56:45,469 BECAUSE WE HAVE THESE BIGGER 4723 03:56:45,469 --> 03:56:46,337 PRACTICES WHERE WE'RE TALKING 4724 03:56:46,337 --> 03:56:51,842 ABOUT THE NUANCE AND WE'RE 4725 03:56:51,842 --> 03:56:58,182 DEALING WITH COMMUNITY AND ILLIT 4726 03:56:58,182 --> 03:57:01,852 RASE IS AT A -- ILLITERACY AND 4727 03:57:01,852 --> 03:57:02,920 IT'S FRUSTRATING AND THE PEOPLE 4728 03:57:02,920 --> 03:57:04,021 WHO HAVE POWER IN OUR 4729 03:57:04,021 --> 03:57:05,823 COMMUNITIES HAVE TYPICALLY NOT 4730 03:57:05,823 --> 03:57:06,757 THE ONES HELPING. 4731 03:57:06,757 --> 03:57:08,759 SOMETIMES IT HAPPENS BUT IT 4732 03:57:08,759 --> 03:57:11,195 DOESN'T ALWAYS HAPPEN THAT WAY. 4733 03:57:11,195 --> 03:57:14,265 I THINK WE NEED TO THINK ABOUT 4734 03:57:14,265 --> 03:57:21,171 THAT CAREFULLY. 4735 03:57:21,171 --> 03:57:26,877 >> TWO IN REASON TO YOUR 4736 03:57:26,877 --> 03:57:35,085 COMMENTS YOU KNOW TO ACHIEVE 4737 03:57:35,085 --> 03:57:39,857 INFORMED CONSENT IF YOU HAVE 4738 03:57:39,857 --> 03:57:41,926 ILLITE 4739 03:57:41,926 --> 03:57:43,827 ILLITERAL RAT LANGUAGE YOU 4740 03:57:43,827 --> 03:57:48,566 HAVE -- ILLITERATE LANGUAGE YOU 4741 03:57:48,566 --> 03:57:50,701 HAVE TO PICK INFORMED CONSENT 4742 03:57:50,701 --> 03:57:52,303 AND ONE OF THE PROBLEMS WITH 4743 03:57:52,303 --> 03:57:56,907 FPIC OR CONCEPT IS THAT IT'S 4744 03:57:56,907 --> 03:57:59,510 JUST CONSIDERED AN ETHIC. 4745 03:57:59,510 --> 03:58:03,180 IF YOU VIOLATE AN ETHICAL 4746 03:58:03,180 --> 03:58:10,187 STANDARD THERE'S NOT NECESSARILY 4747 03:58:10,187 --> 03:58:13,524 A LEGAL REMEDY YET AND HOW DO 4748 03:58:13,524 --> 03:58:15,559 YOU CREATE YOUR LEGAL REMEDY TO 4749 03:58:15,559 --> 03:58:16,427 UPHOLD THE STANDARD? 4750 03:58:16,427 --> 03:58:21,599 >> TO SPEAK TO THAT I WOULD NOT 4751 03:58:21,599 --> 03:58:23,634 FEEL OKAY TURNING SOMEONE AWAY 4752 03:58:23,634 --> 03:58:25,002 FOR THE FACT THEY HAVEN'T HAD 4753 03:58:25,002 --> 03:58:26,270 THE OPPORTUNITY TO LEARN TO 4754 03:58:26,270 --> 03:58:26,470 READ. 4755 03:58:26,470 --> 03:58:30,808 WE HAVE TAKEN THE TIME AND WE 4756 03:58:30,808 --> 03:58:32,910 HAVE GONE THROUGH THE PROCESS. 4757 03:58:32,910 --> 03:58:34,511 SAME THING FOR THOSE NOT 4758 03:58:34,511 --> 03:58:35,713 ENROLLED IN THE TRIBE. 4759 03:58:35,713 --> 03:58:36,780 IT'S THE SAME ISSUE. 4760 03:58:36,780 --> 03:58:38,282 PEOPLE COME TO US AND WANT THEIR 4761 03:58:38,282 --> 03:58:40,384 VOICE TO BE HEARD AND IT'S OUR 4762 03:58:40,384 --> 03:58:41,785 RESPONSIBILITY TO HELP TRANSLATE 4763 03:58:41,785 --> 03:58:44,888 A SYSTEM THAT IS NOT BUILT FOR 4764 03:58:44,888 --> 03:58:45,089 THEM. 4765 03:58:45,089 --> 03:58:49,526 IT'S UNJUST AND SEEKING FAIR 4766 03:58:49,526 --> 03:58:50,394 CONTINUED SERVITUDE TO THE 4767 03:58:50,394 --> 03:59:00,638 LARGER SYSTEM. 4768 03:59:02,473 --> 03:59:06,276 AND PROFITING AS HUMAN BEINGS 4769 03:59:06,276 --> 03:59:08,912 NOT AS NATIVE PEOPLE. 4770 03:59:08,912 --> 03:59:10,781 WHEN WE'RE STUDYING THAT WE HAVE 4771 03:59:10,781 --> 03:59:12,916 TO MAKE PEACE WITH THAT AND AS 4772 03:59:12,916 --> 03:59:14,485 CLINICIANS WE DON'T FEEL OKAY 4773 03:59:14,485 --> 03:59:20,024 WITH THAT. 4774 03:59:20,024 --> 03:59:21,558 WE KNOW WHAT WILL NOT TRANSLATE 4775 03:59:21,558 --> 03:59:24,862 AND HAVE TO START LOOKING AT 4776 03:59:24,862 --> 03:59:26,697 SMALLER SAMPLE SIZES AND 4777 03:59:26,697 --> 03:59:27,765 COMMUNITIES THAT HELP HEALING. 4778 03:59:27,765 --> 03:59:29,400 THAT'S MY OWN SOAPBOX. 4779 03:59:29,400 --> 03:59:31,568 IN TERMS OF GRANULARITY, WE HAVE 4780 03:59:31,568 --> 03:59:35,172 TO STRUGGLE TO PAY OUR ELDERS TO 4781 03:59:35,172 --> 03:59:37,541 COME IN TO DO PRAYERS AND 4782 03:59:37,541 --> 03:59:38,242 THINGS. 4783 03:59:38,242 --> 03:59:40,611 WE HAVE TO GO THROUGH YOU WILL 4784 03:59:40,611 --> 03:59:41,545 THESE DIFFERENT. 4785 03:59:41,545 --> 03:59:42,846 AND AT OUR INSTITUTION THEY'VE 4786 03:59:42,846 --> 03:59:46,684 TAKEN MONEY FROM THE CHECKS AND 4787 03:59:46,684 --> 03:59:50,921 THEY'RE SMALL HONORARIUMS NOT 4788 03:59:50,921 --> 03:59:52,289 COMMENSURATE WITH THEIR TRAINING 4789 03:59:52,289 --> 03:59:53,757 AND OUR MEDICINE PEOPLE AND 4790 03:59:53,757 --> 03:59:55,259 THEY'RE GETTING THEM SIX MONTHS 4791 03:59:55,259 --> 03:59:57,061 LATER AND IF THEY WORK FOR THE 4792 03:59:57,061 --> 03:59:59,530 STATE THEY TAKE TAXES OUT AND 4793 03:59:59,530 --> 04:00:01,665 CONSIDER THEM A PART-TIME 4794 04:00:01,665 --> 04:00:03,200 EMPLOYEE AND THESE ARE 4795 04:00:03,200 --> 04:00:04,501 FUNDAMENTALLY UNETHICAL AND 4796 04:00:04,501 --> 04:00:08,906 NOBODY IS POLICING THAT. 4797 04:00:08,906 --> 04:00:19,383 IT'S A LITTLE DIFFICULT AND 4798 04:00:20,584 --> 04:00:23,287 PEOPLE GIVE UP AND IT'S NOT AN 4799 04:00:23,287 --> 04:00:24,421 UNREASONABLE REACTION FROM WHAT 4800 04:00:24,421 --> 04:00:26,123 I'VE SEEN AND THAT'S MY OWN TWO 4801 04:00:26,123 --> 04:00:26,323 CENTS. 4802 04:00:26,323 --> 04:00:36,300 WE WORK WITH PEOPLE FOR SURE. 4803 04:00:36,300 --> 04:00:38,001 NOW THERE ARE LEADING THE 4804 04:00:38,001 --> 04:00:38,769 IMPORTANT DISCUSSIONS I'VE 4805 04:00:38,769 --> 04:00:41,805 LEARNED IN THE SESSION AND I 4806 04:00:41,805 --> 04:00:44,174 APPRECIATE ALL THE INSIGHT AND 4807 04:00:44,174 --> 04:00:45,309 WISDOM AT THE TABLE. 4808 04:00:45,309 --> 04:00:49,113 I'LL PASS IT TO KARINA. 4809 04:00:49,113 --> 04:00:49,513 >> THAT WAS GOOD. 4810 04:00:49,513 --> 04:00:51,648 WE'RE JUST GETTING GOING. 4811 04:00:51,648 --> 04:00:55,753 BUT I ALSO WANT TO MAKE SURE I'M 4812 04:00:55,753 --> 04:00:56,186 FEEDING PEOPLE. 4813 04:00:56,186 --> 04:01:02,893 SO WE ARE GOING TO TAKE A LITTLE 4814 04:01:02,893 --> 04:01:03,527 BREAK. 4815 04:01:03,527 --> 04:01:04,928 IF YOU ORDERED FOOD IT'S OUTSIDE 4816 04:01:04,928 --> 04:01:05,763 THE DOOR. 4817 04:01:05,763 --> 04:01:08,899 WE'LL HAVE AT LEAST A 35, 40 4818 04:01:08,899 --> 04:01:11,635 MINUTE BREAK IF YOU WANT TO WALK 4819 04:01:11,635 --> 04:01:13,203 AROUND, STRETCH, EAT IN HERE IF 4820 04:01:13,203 --> 04:01:18,876 YOU WANT TO GO OUTSIDE THERE'S 4821 04:01:18,876 --> 04:01:20,878 TABLES OUT SIDE OF NIH BUILDING 4822 04:01:20,878 --> 04:01:21,545 1. 4823 04:01:21,545 --> 04:01:24,314 FOR THOSE WHO DIDN'T ORDER FOOD 4824 04:01:24,314 --> 04:01:26,884 AND WANT TO GO TO THE CAFETERIA 4825 04:01:26,884 --> 04:01:30,954 YOU CAN GO WITH DR. CALDWELL. 4826 04:01:30,954 --> 04:01:32,589 THIS IS A RICH DISCUSSION AND I 4827 04:01:32,589 --> 04:01:36,293 KNOW WE'RE LAYERS UPON LAYERS 4828 04:01:36,293 --> 04:01:37,161 UPON LAYERS. 4829 04:01:37,161 --> 04:01:41,331 IT'S ALL IMPORTANT AND WE'RE NOT 4830 04:01:41,331 --> 04:01:43,867 ALWAYS GOING TO -- WE DON'T ALL 4831 04:01:43,867 --> 04:01:45,702 HAVE TO BE OF ONE MIND BUT HAVE 4832 04:01:45,702 --> 04:01:47,671 TO BE ABLE TO FIELD IT'S A GOOD 4833 04:01:47,671 --> 04:01:50,140 PLACE TO PUT OUR THOUGHTS OUT 4834 04:01:50,140 --> 04:01:51,708 THERE TO SHARE WITH EACH OTHER 4835 04:01:51,708 --> 04:01:52,042 AND GROW. 4836 04:01:52,042 --> 04:01:54,812 I'M HOPING WE CONTINUE TO HAVE A 4837 04:01:54,812 --> 04:01:55,979 GREAT CONVERSATION THIS 4838 04:01:55,979 --> 04:01:57,181 AFTERNOON BECAUSE I THINK WE'RE 4839 04:01:57,181 --> 04:02:05,334 JUST GETTING REVVED UP NOW. 4840 04:02:05,334 --> 04:02:06,635 THAT'S GOOD. 4841 04:02:06,635 --> 04:02:06,969 ALL RIGHT. 4842 04:02:06,969 --> 04:02:10,639 SEE YOU GUYS AT WHAT TIME? 4843 04:02:10,639 --> 04:02:16,459 1:40. 4844 04:02:16,459 --> 04:02:22,031 THANK YOU, EVERYBODY. 4845 04:02:22,031 --> 04:02:32,241 HERE WE GO. 4846 04:02:38,314 --> 04:02:40,983 WE ARE READY FOR OUR PANEL 3. 4847 04:02:40,983 --> 04:02:42,585 THANK YOU, EVERYBODY. 4848 04:02:42,585 --> 04:02:44,987 I HOPE YOU GOT A CHANCE GET 4849 04:02:44,987 --> 04:02:45,821 OUTSIDE A LITTLE BIT AND GET 4850 04:02:45,821 --> 04:02:52,461 OUTSUED -- OUTSIDE OF A 4851 04:02:52,461 --> 04:02:53,863 BUILDING. 4852 04:02:53,863 --> 04:02:55,097 HOPEFULLY YOU GOT DOWN TO THE 4853 04:02:55,097 --> 04:03:00,102 STREAM AND SEE THE STREAM. 4854 04:03:00,102 --> 04:03:02,672 I MADE IT MY MISSION TO FIND IT 4855 04:03:02,672 --> 04:03:03,406 AND IT DOES EXIST. 4856 04:03:03,406 --> 04:03:04,440 THERE'S A STREAM ON CAMPUS. 4857 04:03:04,440 --> 04:03:13,382 WE'RE ON TO OUR THIRD PANEL. 4858 04:03:13,382 --> 04:03:24,026 DR. CATHY ETS WILL BE LEADING 4859 04:03:28,297 --> 04:03:29,999 THAT AND ADDRESSING DATA SHARING 4860 04:03:29,999 --> 04:03:31,767 AND PRINCIPLES AND PRACTICES AND 4861 04:03:31,767 --> 04:03:32,068 CHALLENGES. 4862 04:03:32,068 --> 04:03:34,937 SO WHAT WE'RE GOING TO FOCUS ON 4863 04:03:34,937 --> 04:03:37,139 DISCUSSING NOW IS HOW DATA CAN 4864 04:03:37,139 --> 04:03:39,608 BE STEWARD AND MANAGED 4865 04:03:39,608 --> 04:03:41,477 RESPONSIBLY AND ETHICALLY AND 4866 04:03:41,477 --> 04:03:44,046 ALIGNING WITH COMMUNITY 4867 04:03:44,046 --> 04:03:47,283 GUIDELINES AN SOVEREIGNTY 4868 04:03:47,283 --> 04:03:47,984 PRINCIPLES. 4869 04:03:47,984 --> 04:03:50,419 WE WANT TO THINK OF THIS FOR 4870 04:03:50,419 --> 04:03:51,887 PRIMARY DATA CLICK AND FOR 4871 04:03:51,887 --> 04:03:53,589 SECONDARY USE OR RE-USE OF DATA 4872 04:03:53,589 --> 04:04:00,463 AND HOPING TO IDENTIFY SOME OF 4873 04:04:00,463 --> 04:04:07,136 THE CHALLENGES FACED AND ALSO 4874 04:04:07,136 --> 04:04:09,238 PROPOSING SOLUTIONS FOR TRUST 4875 04:04:09,238 --> 04:04:10,139 AND DATA SHARING AGREEMENTS. 4876 04:04:10,139 --> 04:04:16,212 I'M GOING TO TAKE THE QUESTIONS 4877 04:04:16,212 --> 04:04:19,148 A LITTLE BIT OUT OF ORDER AND 4878 04:04:19,148 --> 04:04:20,750 AND I'LL POSE ONE OF THE 4879 04:04:20,750 --> 04:04:23,219 QUESTIONS YOU ALL HAVE 4880 04:04:23,219 --> 04:04:25,121 CONSIDERED ALREADY AND ASK FOR 4881 04:04:25,121 --> 04:04:26,355 WHOM EVER WANTS TO ANSWER IT AND 4882 04:04:26,355 --> 04:04:28,624 IF PEOPLE WANT TO ADD QUESTIONS 4883 04:04:28,624 --> 04:04:30,059 IF THAT WORKS FOR EVERYBODY. 4884 04:04:30,059 --> 04:04:33,162 SO THE FIRST QUESTION THAT I 4885 04:04:33,162 --> 04:04:34,330 WOULD POSE FOR CONSIDERATION IS 4886 04:04:34,330 --> 04:04:36,932 WHAT ARE BEST PRACTICES FOR 4887 04:04:36,932 --> 04:04:39,668 ETHICAL DATA SHARING 4888 04:04:39,668 --> 04:04:42,238 REPOSITORIES AND SECONDARY DATA 4889 04:04:42,238 --> 04:04:42,505 USE? 4890 04:04:42,505 --> 04:04:48,210 SO JUST WHAT ARE SOME OF THE 4891 04:04:48,210 --> 04:04:59,055 BEST PRACT PRACTICES. 4892 04:05:08,898 --> 04:05:13,035 >> I KNOW THERE'S SOME ANSWERS. 4893 04:05:13,035 --> 04:05:15,371 >> I HAVE A QUESTION THOUGH. 4894 04:05:15,371 --> 04:05:17,573 BEST PRACTICE FOR WHO? 4895 04:05:17,573 --> 04:05:20,009 I JUST WANT TO -- YOU KNOW, SOME 4896 04:05:20,009 --> 04:05:24,480 PEOPLE SAY LIKE THE BEST 4897 04:05:24,480 --> 04:05:26,682 PRACTICE IS ALREADY BEING 4898 04:05:26,682 --> 04:05:26,949 PRACTICED. 4899 04:05:26,949 --> 04:05:29,218 I GUESS MY PERSONAL RESPONSE TO 4900 04:05:29,218 --> 04:05:30,653 THAT QUESTION AND I'LL OPEN THAT 4901 04:05:30,653 --> 04:05:33,722 UP TO THE PANEL IS BEST 4902 04:05:33,722 --> 04:05:34,957 PRACTICES FOR COMMUNITY BUT I 4903 04:05:34,957 --> 04:05:37,159 THINK WE DO HAVE TO THINK ABOUT 4904 04:05:37,159 --> 04:05:40,696 THE AUDIENCE AND BRIDGING GAPS 4905 04:05:40,696 --> 04:05:42,865 BUT YEAH I WOULD POSE THAT 4906 04:05:42,865 --> 04:05:43,499 QUESTION TO THE PANEL AND NOT TO 4907 04:05:43,499 --> 04:05:53,576 ME. 4908 04:05:56,545 --> 04:06:00,716 >> I'M LIKE THE RESIDENT RADICAL 4909 04:06:00,716 --> 04:06:02,051 TODAY BUT I LOVE YOUR QUESTION. 4910 04:06:02,051 --> 04:06:03,486 >> I THINK YOU ARE. 4911 04:06:03,486 --> 04:06:04,019 >> OKAY. 4912 04:06:04,019 --> 04:06:07,890 I MEAN, I DO THINK THE 4913 04:06:07,890 --> 04:06:09,558 POSITIONALITY IS REALLY A 4914 04:06:09,558 --> 04:06:10,392 CRITICAL COMPONENT OF THAT. 4915 04:06:10,392 --> 04:06:12,361 I THINK FOR FUNDING AGENCIES OF 4916 04:06:12,361 --> 04:06:15,331 COURSE WANT TO SEE THEIR MONEY 4917 04:06:15,331 --> 04:06:18,367 IS USED AND MANAGED IN 4918 04:06:18,367 --> 04:06:19,034 FINANCIALLY RESPONSIBLE WAYS AND 4919 04:06:19,034 --> 04:06:21,403 THOSE SORTS OF THINGS ARE 4920 04:06:21,403 --> 04:06:24,173 IMPORTANT AS FAR AS DATA USE AND 4921 04:06:24,173 --> 04:06:28,210 SHARING BUT I THINK OF EQUAL 4922 04:06:28,210 --> 04:06:28,911 IMPORTANCE IS HOW THIS 4923 04:06:28,911 --> 04:06:32,081 INFORMATION CAN BE SHARED WITH 4924 04:06:32,081 --> 04:06:33,349 THE COMMUNITY MEMBERS WHO NEED 4925 04:06:33,349 --> 04:06:34,683 THE INFORMATION AND THAT COULD 4926 04:06:34,683 --> 04:06:38,287 BE FOR STATE OR LOCAL OR LIKE 4927 04:06:38,287 --> 04:06:43,692 PRIVATE FOUNDATION, 4928 04:06:43,692 --> 04:06:44,126 PHILANTHROPIC USES. 4929 04:06:44,126 --> 04:06:47,129 I'LL BE HONEST IN MY OWN 4930 04:06:47,129 --> 04:06:50,166 COMMUNITY RESEARCH IS FRANKLY 4931 04:06:50,166 --> 04:06:52,268 FROWNED UPON BECAUSE IT'S HAD 4932 04:06:52,268 --> 04:06:54,103 THIS EXTRACTIVE HISTORY I'VE 4933 04:06:54,103 --> 04:06:56,038 TALKED ABOUT TODAY BUT I ALSO 4934 04:06:56,038 --> 04:06:59,308 THINK WE ALL SEE THE NECESSITY 4935 04:06:59,308 --> 04:07:02,077 FOR FRAMING OUR HEALTH 4936 04:07:02,077 --> 04:07:04,914 CONDITIONS AND PROBLEMS IN THE 4937 04:07:04,914 --> 04:07:06,315 LANGUAGE THE FEDERAL GOVERNMENT 4938 04:07:06,315 --> 04:07:07,383 SEEMS TO VALUE. 4939 04:07:07,383 --> 04:07:08,517 I DON'T THINK IT'S SOMETHING 4940 04:07:08,517 --> 04:07:11,687 THAT IS SUSTAINABLE AND BECAUSE 4941 04:07:11,687 --> 04:07:12,621 A LOT OF THE TRIBES HAVE 4942 04:07:12,621 --> 04:07:15,824 ACTUALLY BEGUN TO LOOK ELSEWHERE 4943 04:07:15,824 --> 04:07:19,962 FOR HELP FOR INSIGHT AND THE 4944 04:07:19,962 --> 04:07:22,865 REALITY IS OUR INDIGENOUS WAYS 4945 04:07:22,865 --> 04:07:26,168 OF KNOWING ARE INCREDIBLY 4946 04:07:26,168 --> 04:07:26,435 POWERFUL. 4947 04:07:26,435 --> 04:07:29,338 WHEN WE TALK ABOUT THE PROBLEMS 4948 04:07:29,338 --> 04:07:30,539 WITH SUICIDE WE KNOW A LOT OF 4949 04:07:30,539 --> 04:07:31,640 THAT TIES TO OUR IDENTITY AND 4950 04:07:31,640 --> 04:07:34,043 HOW WE VIEW OURSELVES. 4951 04:07:34,043 --> 04:07:36,845 IF YOU HAVE DATA THAT REPLICATES 4952 04:07:36,845 --> 04:07:39,481 A STORY THAT'S BASED ON 4953 04:07:39,481 --> 04:07:42,318 PATHOLOGY, THAT IS WHAT 4954 04:07:42,318 --> 04:07:43,152 PERPETUATES WITHIN THE 4955 04:07:43,152 --> 04:07:43,852 COMMUNITY. 4956 04:07:43,852 --> 04:07:46,488 AND SO I DON'T THINK A 4957 04:07:46,488 --> 04:07:47,289 RESPONSIBLE USE AND SHARING OF 4958 04:07:47,289 --> 04:07:51,093 DATA ESPECIALLY IF IT'S SERIOUS 4959 04:07:51,093 --> 04:07:54,930 SIGNIFICANT TOPIC LIKE MENTAL 4960 04:07:54,930 --> 04:07:58,000 HEALTH OR STIGMATIZED CONDITION 4961 04:07:58,000 --> 04:08:00,569 IS SHARED WELL WITHIN OUR 4962 04:08:00,569 --> 04:08:00,869 COMMUNITIES. 4963 04:08:00,869 --> 04:08:03,072 FREQUENTLY I'VE HAD FRIENDS WHO 4964 04:08:03,072 --> 04:08:04,673 ARE TEACHERS WHO HAVE OVERHEARD 4965 04:08:04,673 --> 04:08:06,242 CONVERSATION BY CHILDREN WITHIN 4966 04:08:06,242 --> 04:08:08,477 OUR COMMUNITIES WHO SAY DON'T 4967 04:08:08,477 --> 04:08:10,679 YOU KNOW X, Y OR Z NEGATIVE 4968 04:08:10,679 --> 04:08:14,516 THING ARE PART OF OUR CULTURE. 4969 04:08:14,516 --> 04:08:17,152 WE HAVEN'T HAD ACCESS TO OUR 4970 04:08:17,152 --> 04:08:18,887 CULTURE AND COMMUNITY. 4971 04:08:18,887 --> 04:08:20,456 WE HAVE UNIVERSITIES THAT SORT 4972 04:08:20,456 --> 04:08:23,892 OF PREY UPON FOR BETTER OR FOR 4973 04:08:23,892 --> 04:08:25,327 WORSE, USUALLY WELL INTENTIONED, 4974 04:08:25,327 --> 04:08:29,431 BUT OUR LACK OF ACCESS AND MANY 4975 04:08:29,431 --> 04:08:33,669 OF US INTEREST TRYING TO CHANGE 4976 04:08:33,669 --> 04:08:35,738 THAT BUT IT'S AN INCREMENTAL 4977 04:08:35,738 --> 04:08:37,740 CHANGE I GREW UP ON THE 4978 04:08:37,740 --> 04:08:39,341 RESERVATION AND WAS NOT ALLOWED 4979 04:08:39,341 --> 04:08:40,943 TO SPEAK OUR LANGUAGE OR LEARN 4980 04:08:40,943 --> 04:08:44,179 IN THE WAY WE TRADITIONALLY 4981 04:08:44,179 --> 04:08:44,380 LEARN. 4982 04:08:44,380 --> 04:08:46,615 WE ARE ONLY NOW MANY OF US ABLE 4983 04:08:46,615 --> 04:08:47,716 IT DO THESE THINGS. 4984 04:08:47,716 --> 04:08:51,820 IT'S BECAUSE WE'VE TAKEN IT UPON 4985 04:08:51,820 --> 04:08:53,922 OURSELVES AND BROUGHT OUR 4986 04:08:53,922 --> 04:08:57,159 CEREMONIES BACK AND REPATRIATED 4987 04:08:57,159 --> 04:08:59,828 OUR WAYS AND A LOT OF THAT HAS 4988 04:08:59,828 --> 04:09:00,462 BEEN DONE WITHOUT FEDERAL 4989 04:09:00,462 --> 04:09:01,130 FUNDING. 4990 04:09:01,130 --> 04:09:02,931 SOME OF THE WORK THAT MATTERS 4991 04:09:02,931 --> 04:09:04,099 THE MOST IN OUR COMMUNITY 4992 04:09:04,099 --> 04:09:04,466 FRANKLY. 4993 04:09:04,466 --> 04:09:05,968 I DON'T THINK PEOPLE ARE LOOKING 4994 04:09:05,968 --> 04:09:08,604 TO CLINICAL TRIALS TO TELL THEM 4995 04:09:08,604 --> 04:09:10,372 HOW TO LOVE EACH OTHER BETTER 4996 04:09:10,372 --> 04:09:15,711 AND HOW TO BE BETTER COMMUNITY 4997 04:09:15,711 --> 04:09:16,178 MEMBERS. 4998 04:09:16,178 --> 04:09:17,513 I THINK THERE'S A LOT OF DANGER 4999 04:09:17,513 --> 04:09:18,080 IN THAT. 5000 04:09:18,080 --> 04:09:20,916 WHEN WE DO INCORPORATE CULTURE 5001 04:09:20,916 --> 04:09:22,451 IN MEANINGFUL WAYS THOSE WHO ARE 5002 04:09:22,451 --> 04:09:24,253 NATIVE SCHOLARS ONE OF THE 5003 04:09:24,253 --> 04:09:29,358 DANGERS IS IF IT DOESN'T WORK 5004 04:09:29,358 --> 04:09:37,266 THE SAME ERROR WITHIN OUR 5005 04:09:37,266 --> 04:09:37,499 METHODS. 5006 04:09:37,499 --> 04:09:44,940 I DON'T PRETEND TO HAVE THE 5007 04:09:44,940 --> 04:09:54,083 ANSWER BUT THINK WE KCAN MAKE TE 5008 04:09:54,083 --> 04:09:55,884 FINDINGS MATTER AND WHEN WE TALK 5009 04:09:55,884 --> 04:09:57,586 ABOUT USING DATA UNWAYS THAT 5010 04:09:57,586 --> 04:09:59,521 ULTIMATELY BENEFITS THE 5011 04:09:59,521 --> 04:10:00,422 COMMUNITY WE INCLUDE THAT. 5012 04:10:00,422 --> 04:10:03,792 I'VE BEEN A MEMBER OF OUR TRIBAL 5013 04:10:03,792 --> 04:10:08,997 IRB AT THE BLACK FEET NATION AND 5014 04:10:08,997 --> 04:10:16,472 WYOMING TRIBAL LEADERS IN THE 5015 04:10:16,472 --> 04:10:18,774 PAST AND LOOK WHETHER IT 5016 04:10:18,774 --> 04:10:20,309 BENEFITS THE COMMUNITY AND 5017 04:10:20,309 --> 04:10:21,443 FRANKLY IT DOESN'T. 5018 04:10:21,443 --> 04:10:29,451 IT'S KIND OF HEDGED IN WAYS 5019 04:10:29,451 --> 04:10:34,156 WHERE IT CAN BENEFIT LIFE IN 5020 04:10:34,156 --> 04:10:37,860 GENERAL ON THE PLANET BUT WE TO 5021 04:10:37,860 --> 04:10:39,395 THE THINGS THAT DO WORK AND 5022 04:10:39,395 --> 04:10:41,196 WE'RE A STORY TELLING CULTURE 5023 04:10:41,196 --> 04:10:42,498 AND THAT'S WHAT WE SHOULD INVEST 5024 04:10:42,498 --> 04:10:44,099 IN IS TELLING STORIES THROUGH 5025 04:10:44,099 --> 04:10:45,834 DATA AND SCIENCE AND DO SO IN 5026 04:10:45,834 --> 04:10:48,003 WAYS THAT ENGAGE IN AND HEAL 5027 04:10:48,003 --> 04:10:48,670 COMMUNITIES IF THIS IS WHAT THE 5028 04:10:48,670 --> 04:10:51,974 GOAL IS. 5029 04:10:51,974 --> 04:11:02,518 ONE OF OUR ELDERS TALKED TO I 5030 04:11:03,152 --> 04:11:07,156 -- A STUDENT IN CANADA AND HAD 5031 04:11:07,156 --> 04:11:09,024 BEEN REMOVED FROM A HOME AND AS 5032 04:11:09,024 --> 04:11:11,326 PART OFF THE INTERVENTION THEY 5033 04:11:11,326 --> 04:11:11,894 PROVIDED CULTURAL HEALING 5034 04:11:11,894 --> 04:11:13,262 THROUGH THE PROCESS. 5035 04:11:13,262 --> 04:11:16,899 YOU HAVE TO VET YOUR ELDERS SO 5036 04:11:16,899 --> 04:11:18,000 NOT PREDATORY IN DIFFERENT WAYS 5037 04:11:18,000 --> 04:11:23,071 AND THAT'S IMPORTANT BUT THIS 5038 04:11:23,071 --> 04:11:28,010 ELDER WORKS WITHIN CHILE 5039 04:11:28,010 --> 04:11:29,244 PROTECTIVE SERVICES AND THE -- 5040 04:11:29,244 --> 04:11:31,313 CHILD PROTECTIVE SERVICES AND 5041 04:11:31,313 --> 04:11:33,949 THE CHILD SAID I FINALLY FEEL 5042 04:11:33,949 --> 04:11:34,716 LIKE I'M HOME. 5043 04:11:34,716 --> 04:11:38,120 THAT IS PLACE-BASED KNOWLEDGE. 5044 04:11:38,120 --> 04:11:40,589 IT'S PLACE-BASED COMPASSION AND 5045 04:11:40,589 --> 04:11:42,357 LOVE WITHIN OUR COMMUNITIES AND 5046 04:11:42,357 --> 04:11:43,959 WAYS AND THOSE ARE THINGS SHARED 5047 04:11:43,959 --> 04:11:45,360 WITHIN OUR CREATION STORIES AND 5048 04:11:45,360 --> 04:11:49,331 WITHIN OUR CEREMONIES THAT ARE 5049 04:11:49,331 --> 04:11:51,333 ACTIVE AND OUR LANGUAGES ARE 5050 04:11:51,333 --> 04:11:57,906 ACTIVE AND VERB BASED NOT NOUN 5051 04:11:57,906 --> 04:11:58,574 BASED BECAUSE THAT'S WHAT WE 5052 04:11:58,574 --> 04:12:04,480 HEAL OUR COMMUNITIES WITH. 5053 04:12:04,480 --> 04:12:07,816 WE ASK ABOUT DATA AND 5054 04:12:07,816 --> 04:12:09,418 DISSEMINATIONAL STEWARDSHIP 5055 04:12:09,418 --> 04:12:14,857 RELIES ON HUMAN SYSTEMS AND WHEN 5056 04:12:14,857 --> 04:12:18,093 THEY'RE SUBJECT TO MANY THINGS 5057 04:12:18,093 --> 04:12:19,761 WE'RE SUBJECT TO, GREED, 5058 04:12:19,761 --> 04:12:21,430 CORRUPTION, HUNGER FOR POWER, 5059 04:12:21,430 --> 04:12:25,367 THOSE THINGS CAN BECOME 5060 04:12:25,367 --> 04:12:26,401 CORRUPTED AND WE SEE SYSTEM 5061 04:12:26,401 --> 04:12:29,204 FAILURES WHEN THAT HAPPENS. 5062 04:12:29,204 --> 04:12:31,139 WE SEE THOSE MOST VULNERABLE 5063 04:12:31,139 --> 04:12:35,644 HURTING MORE. 5064 04:12:35,644 --> 04:12:39,481 WHEN WE HAVE REINFORCED SYSTEMS 5065 04:12:39,481 --> 04:12:40,482 WORSHIPPING DATA WE'VE BEEN 5066 04:12:40,482 --> 04:12:43,886 DESCRIBING TODAY, WE HAVE TO 5067 04:12:43,886 --> 04:12:46,154 THINK ABOUT WHAT OUR ANCESTORS 5068 04:12:46,154 --> 04:12:47,523 WOULD HAVE DONE IN THESE 5069 04:12:47,523 --> 04:12:49,057 SITUATIONS AND HOW THEY WOULD 5070 04:12:49,057 --> 04:12:49,858 HAVE FIXED THESE CONDITIONS AND 5071 04:12:49,858 --> 04:12:52,461 PROBLEMS AND IT'S PROBABLY NOT 5072 04:12:52,461 --> 04:12:54,863 TO BRING IN A TEAM OF LAWYERS TO 5073 04:12:54,863 --> 04:12:55,497 HAVE BETTER FORMS FOR THEM TO 5074 04:12:55,497 --> 04:13:00,836 COMPLETE. 5075 04:13:00,836 --> 04:13:04,907 IT WOULD BE TO HELP OUR CHILDREN 5076 04:13:04,907 --> 04:13:08,477 SEE THEMSELVES AS WAYS THAT ARE 5077 04:13:08,477 --> 04:13:09,912 COMPASSIONATE AND KIND. 5078 04:13:09,912 --> 04:13:12,748 WHEN WE HAVE CEREMONIES THOSE 5079 04:13:12,748 --> 04:13:13,782 ARE THINGS WE TEACH. 5080 04:13:13,782 --> 04:13:16,451 YOU DON'T SLAP AROUND YOUR 5081 04:13:16,451 --> 04:13:17,553 BUNDLE OR SOMETHING LIKE THAT. 5082 04:13:17,553 --> 04:13:20,889 YOU KISS THE ITEMS IN YOUR 5083 04:13:20,889 --> 04:13:21,423 BUNDLE. 5084 04:13:21,423 --> 04:13:23,525 YOU TALK TO THE THINGS IN YOUR 5085 04:13:23,525 --> 04:13:24,726 LIFE AND SHARE WITH THEM YOU 5086 04:13:24,726 --> 04:13:26,361 LOVE THEM. 5087 04:13:26,361 --> 04:13:28,463 YOU WERE TALKING ABOUT INANIMATE 5088 04:13:28,463 --> 04:13:31,166 LIKE OUR MOUNTAINS ARE PEOPLE. 5089 04:13:31,166 --> 04:13:35,170 WE PREY TO OUR MON MOUNTAINS. 5090 04:13:35,170 --> 04:13:37,306 THESE ARE DIFFERENT FUNDAMENTAL 5091 04:13:37,306 --> 04:13:40,242 WAY OF VIEWING OUR SOCIETIES AND 5092 04:13:40,242 --> 04:13:41,843 WORLDS THAT ARE RELATIONAL. 5093 04:13:41,843 --> 04:13:47,783 THOSE ARE THINGS I'VE SEEN AS A 5094 04:13:47,783 --> 04:13:49,751 PERSON TO BE VERY HELPFUL TOO. 5095 04:13:49,751 --> 04:13:54,289 YOU WANT TO LOOK AT READABILITY 5096 04:13:54,289 --> 04:13:55,123 AND COMMUNICATING. 5097 04:13:55,123 --> 04:13:56,325 EVERYONE'S ON FACEBOOK NOW AND 5098 04:13:56,325 --> 04:13:58,193 THROUGH MEDIA AND THINGS LIKE 5099 04:13:58,193 --> 04:13:58,393 THAT. 5100 04:13:58,393 --> 04:14:00,329 I HAVE CHILDREN WHO ARE IN 5101 04:14:00,329 --> 04:14:02,598 TELEVISION AND FILM AND THAT'S 5102 04:14:02,598 --> 04:14:03,999 BEEN HELPFUL. 5103 04:14:03,999 --> 04:14:06,301 PEOPLE LIKE LILLY GLADSTONE AND 5104 04:14:06,301 --> 04:14:09,771 LAST NIGHT THE EMMYS WE SAW MORE 5105 04:14:09,771 --> 04:14:10,973 NATIVE PEOPLE BEING REPRESENTED. 5106 04:14:10,973 --> 04:14:14,576 THOSE THINGS ARE IMPACTFUL AS 5107 04:14:14,576 --> 04:14:15,544 FAR AS PUBLIC HEALTH 5108 04:14:15,544 --> 04:14:16,645 INTERVENTION AND GOOD TO SUPPORT 5109 04:14:16,645 --> 04:14:18,246 PEOPLE WHO ARE TELLING OUR 5110 04:14:18,246 --> 04:14:19,948 STORIES IN COMPELLING WAYS THAT 5111 04:14:19,948 --> 04:14:24,486 MAY OR MAY NOT ALLOW FOR OTHER 5112 04:14:24,486 --> 04:14:27,055 PEOPLE TO CARE ABOUT OUR LIVES. 5113 04:14:27,055 --> 04:14:28,790 HISTORICALLY IT'S NOT BEEN THE 5114 04:14:28,790 --> 04:14:29,024 CASE. 5115 04:14:29,024 --> 04:14:30,792 PEOPLE HAVE NOT CARED ABOUT OUR 5116 04:14:30,792 --> 04:14:32,361 LIVES OR WANTED TO DOCUMENT OR 5117 04:14:32,361 --> 04:14:34,296 DEDICATE RESOURCE TO THE 5118 04:14:34,296 --> 04:14:34,963 PRESERVATION OR PROMOTION OF OUR 5119 04:14:34,963 --> 04:14:40,669 LIVES OR CULTURE. 5120 04:14:40,669 --> 04:14:43,171 IT DOES MATTER WHO IS ASKING THE 5121 04:14:43,171 --> 04:14:53,348 QUESTION. 5122 04:15:11,099 --> 04:15:11,733 >> STORIES ARE TOWARDS 5123 04:15:11,733 --> 04:15:13,001 IMPLEMENTATION OR DEDICATION AND 5124 04:15:13,001 --> 04:15:17,439 THAT'S THE PART THAT'S HARD. 5125 04:15:17,439 --> 04:15:19,908 AT NATIVE BIO, THERE'S 5126 04:15:19,908 --> 04:15:22,210 PRINCIPLES AND ONE OF THE 5127 04:15:22,210 --> 04:15:25,747 VERSIONS OF CARE IS OCAP. 5128 04:15:25,747 --> 04:15:28,483 WE USE IT LIKE CANADA THE 5129 04:15:28,483 --> 04:15:30,419 OWNERSHIP CONTROL ACCESS AND 5130 04:15:30,419 --> 04:15:30,719 POSSESSION. 5131 04:15:30,719 --> 04:15:34,056 IT'S THE POSSESSION THAT IS THE 5132 04:15:34,056 --> 04:15:39,061 BASIS FOR DATA SHARING 5133 04:15:39,061 --> 04:15:41,897 AGREEMENTS AND FOR BEST 5134 04:15:41,897 --> 04:15:43,465 PRACTICES BECAUSE IN THE FEDERAL 5135 04:15:43,465 --> 04:15:48,870 WORLD YOU HAVE FDA AND HIPAA AND 5136 04:15:48,870 --> 04:15:49,905 THE COMMON RULE PUBLIC HEALTH 5137 04:15:49,905 --> 04:15:51,640 LAW AND SOME ARE LAWS AND SOME 5138 04:15:51,640 --> 04:15:55,911 ARE POLICIES. 5139 04:15:55,911 --> 04:16:00,482 YOU HAVE DIFFERENT THINGS AND 5140 04:16:00,482 --> 04:16:02,951 WE'VE BEEN IN A STEP WISE MANNER 5141 04:16:02,951 --> 04:16:08,457 TRYING TO GET THE TRIBES WE WORK 5142 04:16:08,457 --> 04:16:19,000 FOR OR AT AND WE TALKED TO THEM 5143 04:16:24,806 --> 04:16:26,808 AND THEY TOOK THE IRB AS THE 5144 04:16:26,808 --> 04:16:29,311 FLOOR NOT THE CEILING. 5145 04:16:29,311 --> 04:16:31,179 THEY STARTED WITH HUMAN SUBJECT 5146 04:16:31,179 --> 04:16:33,982 AND ADDED FOSTER CARE AND RICE 5147 04:16:33,982 --> 04:16:35,751 BEDS AND CULTURAL STORIES AND A 5148 04:16:35,751 --> 04:16:39,287 BUNCH OF THINGS. 5149 04:16:39,287 --> 04:16:41,256 THEY'RE WAY AHEAD OF WHERE WE 5150 04:16:41,256 --> 04:16:42,190 ARE AND BECAUSE OF LOTS OF 5151 04:16:42,190 --> 04:16:44,025 TRIBES ARE IN DIFFERENT PLACES 5152 04:16:44,025 --> 04:16:47,829 WITH THE UNDERSTANDINGS AND 5153 04:16:47,829 --> 04:16:49,731 WHETHER OR NOT THEY'RE GOING TO 5154 04:16:49,731 --> 04:16:51,299 GET IN TROUBLE WITH THE FEDS BY 5155 04:16:51,299 --> 04:16:53,168 DOING THINGS WE'VE BEEN 5156 04:16:53,168 --> 04:16:58,306 GRADUALLY WORKING ON THE ISSUES 5157 04:16:58,306 --> 04:16:59,341 SOMETIMES IN CONSULTATION WITH 5158 04:16:59,341 --> 04:17:06,081 THE TRIBES, SOMETIMES OUR OWN. 5159 04:17:06,081 --> 04:17:09,351 WE HAD THE HELP OF BIG FIRE LAW. 5160 04:17:09,351 --> 04:17:12,454 IT WAS ONE OF THE FIRST 5161 04:17:12,454 --> 04:17:14,122 ALL-FEMALE LED LEGAL FIRMS IN 5162 04:17:14,122 --> 04:17:15,791 THE COUNTRY ALL NATIVE ALL LEGAL 5163 04:17:15,791 --> 04:17:18,894 WITH THE SUPPORT AND BACKING OF 5164 04:17:18,894 --> 04:17:21,496 LANCE MORGAN FROM A NATION OF 5165 04:17:21,496 --> 04:17:24,599 NEBRASKA AND THEY HELPED 5166 04:17:24,599 --> 04:17:28,870 TREMENDOUSLY. 5167 04:17:28,870 --> 04:17:30,105 THERE'S LAWS IN THE AMERICAN 5168 04:17:30,105 --> 04:17:35,644 COMPETE ACT AND OTHER LAWS THAT 5169 04:17:35,644 --> 04:17:39,748 COMPEL DATA SHARING AND GIVE THE 5170 04:17:39,748 --> 04:17:42,417 THIRD OF INTELLECTUAL PROPERTY 5171 04:17:42,417 --> 04:17:44,853 HOLDINGS OVER DATA TO 5172 04:17:44,853 --> 04:17:46,087 UNIVERSITIES AND THEY DO THAT 5173 04:17:46,087 --> 04:17:46,955 WITHOUT EXCEPTION OR CHALLENGE 5174 04:17:46,955 --> 04:17:49,157 AND WE'VE HAD TO CHALLENGE THEM 5175 04:17:49,157 --> 04:17:50,125 ESPECIALLY IF YOU'RE A 5176 04:17:50,125 --> 04:17:55,163 UNIVERSITY OR RESEARCHER OR LIKE 5177 04:17:55,163 --> 04:17:56,798 US A NONPROFIT ON THE 5178 04:17:56,798 --> 04:18:00,468 RESERVATION WE CAN'T SIGN ANY 5179 04:18:00,468 --> 04:18:02,571 CONTRACT. 5180 04:18:02,571 --> 04:18:04,306 THAT BELONGS TO THE TRIBE AND 5181 04:18:04,306 --> 04:18:05,240 SOME UNIVERSITIES SAY YOU HAVE 5182 04:18:05,240 --> 04:18:09,511 TO. 5183 04:18:09,511 --> 04:18:13,915 LIKE THE STORY ABOUT CDC SAYING 5184 04:18:13,915 --> 04:18:15,917 WE CAN'T COMPEL STATES ABOUT THE 5185 04:18:15,917 --> 04:18:17,452 DATA THEN TRIBES ARE SAYING WHY 5186 04:18:17,452 --> 04:18:18,320 YOU CAN'T COMPEL US. 5187 04:18:18,320 --> 04:18:20,455 IF YOU CAN'T COMPEL A STATE WHY 5188 04:18:20,455 --> 04:18:22,324 CAN YOU COMPEL A TRIBE? 5189 04:18:22,324 --> 04:18:32,834 THE SAME THING LAND WITH THE 5190 04:18:37,239 --> 04:18:38,807 FIELDS AND THEY SAID WE'RE THE 5191 04:18:38,807 --> 04:18:39,107 NIH. 5192 04:18:39,107 --> 04:18:41,376 THEY SAID IT'S BETWEEN THE TRIBE 5193 04:18:41,376 --> 04:18:43,478 AND UNIVERSITY TO NEGOTIATE. 5194 04:18:43,478 --> 04:18:50,285 THE TRIBE ISN'T HERE AND THEY 5195 04:18:50,285 --> 04:18:52,254 SAID YOU HAVE TO SIGN BECAUSE 5196 04:18:52,254 --> 04:18:54,723 YOU'RE RECEIVING THE FUNDING AND 5197 04:18:54,723 --> 04:18:55,624 THERE'S THE PROBLEM. 5198 04:18:55,624 --> 04:18:58,326 WE'RE RECEIVING THE FUNDING AND 5199 04:18:58,326 --> 04:19:00,462 CARRYING OUT THE WORK AND WANT 5200 04:19:00,462 --> 04:19:03,064 US TO SIGN OVER TRIBAL DATA AND 5201 04:19:03,064 --> 04:19:04,633 THE NIH SAID WE CAN'T HELP YOU. 5202 04:19:04,633 --> 04:19:06,368 WE HAD TO GO TO A LAW FIRM TO 5203 04:19:06,368 --> 04:19:08,069 HELP US AND GOT SOME OF WHAT WE 5204 04:19:08,069 --> 04:19:12,040 WANT AND THE REST WE'RE RELYING 5205 04:19:12,040 --> 04:19:16,478 ON CROSSED FINGERS AND TRIBAL 5206 04:19:16,478 --> 04:19:16,778 SOVEREIGNTY. 5207 04:19:16,778 --> 04:19:21,082 THE SHORT ANSWER ABOUT BEST 5208 04:19:21,082 --> 04:19:22,817 PRACTICES THEY DON'T EXIST YET 5209 04:19:22,817 --> 04:19:23,551 BECAUSE OF THE COMPLICATION 5210 04:19:23,551 --> 04:19:25,654 BETWEEN HOW THINGS ARE FUNDED 5211 04:19:25,654 --> 04:19:26,855 AND WHAT FEDERAL LAWS AND 5212 04:19:26,855 --> 04:19:28,456 POLICIES ARE AND WHAT TRIBES 5213 04:19:28,456 --> 04:19:29,858 KNOW AND DON'T KNOW AND WHAT 5214 04:19:29,858 --> 04:19:33,295 TRIBES HAVE IN TERMS OF 5215 04:19:33,295 --> 04:19:43,171 INFRASTRUCTURE OR THE WHERE 5216 04:19:43,171 --> 04:19:44,472 WITH ALL TO TAKE THEM TO COURT. 5217 04:19:44,472 --> 04:19:52,013 >> I RANDOMLY HAVE A LAW DEGREE. 5218 04:19:52,013 --> 04:19:55,951 NEVER PRACTICED LAW. 5219 04:19:55,951 --> 04:19:58,053 I'M NOT LICENSED TO PRACTICE LAW 5220 04:19:58,053 --> 04:20:01,690 BUT HAVE TRAINING IN LAW AND 5221 04:20:01,690 --> 04:20:05,093 TALKED ABOUT BEING A NARCH 5222 04:20:05,093 --> 04:20:09,397 COORDINATOR AT THE TRIBAL 5223 04:20:09,397 --> 04:20:10,098 COUNCIL OF ARIZONA. 5224 04:20:10,098 --> 04:20:11,733 EVERYBODY WANTED TO DO THE 5225 04:20:11,733 --> 04:20:14,836 RESEARCH AT THE SAME TIME WAS 5226 04:20:14,836 --> 04:20:16,071 ENLIGHTENING FOR ME AS SOMEBODY 5227 04:20:16,071 --> 04:20:17,372 WHO HAD JUST COME OUT OF LAW 5228 04:20:17,372 --> 04:20:18,139 SCHOOL. 5229 04:20:18,139 --> 04:20:18,907 IN NEGOTIATING THAT AGREEMENT 5230 04:20:18,907 --> 04:20:21,343 WITH THE UNIVERSITY OF ARIZONA 5231 04:20:21,343 --> 04:20:27,682 THERE WERE KIND OF TWO STICKING 5232 04:20:27,682 --> 04:20:27,916 POINTS. 5233 04:20:27,916 --> 04:20:29,417 ONE WAS WITH THE OWNERSHIP OF 5234 04:20:29,417 --> 04:20:30,752 THE DATA, WHERE WOULD THE DATA 5235 04:20:30,752 --> 04:20:36,191 GO AT THE END OF THE PROJECT AND 5236 04:20:36,191 --> 04:20:40,462 THE OTHER WAS THE INTELLECTUAL 5237 04:20:40,462 --> 04:20:47,369 PROPERTY AND ACADEMIC 5238 04:20:47,369 --> 04:20:56,378 RESEARCHERS PART OF THE NARCH. 5239 04:20:56,378 --> 04:21:00,081 AND THEY WERE TOLD YOU CAN SIGN 5240 04:21:00,081 --> 04:21:01,416 AWAY YOUR RIGHT TO PUBLISH AND 5241 04:21:01,416 --> 04:21:04,452 THEY WORKED WITH TRIBAL PARTNERS 5242 04:21:04,452 --> 04:21:07,088 IN COMMUNITY FOR MANY MANY YEARS 5243 04:21:07,088 --> 04:21:10,725 AND THEY ALREADY HAD AN EXISTING 5244 04:21:10,725 --> 04:21:14,763 TRUSTING RELATIONSHIP WITH THOSE 5245 04:21:14,763 --> 04:21:16,898 PARTNERS AND ALREADY KNEW HOW 5246 04:21:16,898 --> 04:21:20,301 IT'D PLAY OUT AND SO IT WORKED 5247 04:21:20,301 --> 04:21:22,470 OUT REALLY WELL. 5248 04:21:22,470 --> 04:21:24,639 FOR ME AS A NATIVE RESEARCHER 5249 04:21:24,639 --> 04:21:28,476 THAT WAS FOUNDATIONAL MOVING 5250 04:21:28,476 --> 04:21:30,178 FORWARD BECAUSE I KNEW WHAT TO 5251 04:21:30,178 --> 04:21:32,714 SAY TO THE UNIVERSITY'S 5252 04:21:32,714 --> 04:21:33,882 ATTORNEYS OFFICE SAYING WAIT A 5253 04:21:33,882 --> 04:21:35,316 MINUTE THE TRIBE CAN'T OWN THE 5254 04:21:35,316 --> 04:21:35,683 DATA. 5255 04:21:35,683 --> 04:21:37,185 THE TRIBE DOES OWN THE DATA. 5256 04:21:37,185 --> 04:21:40,455 THAT'S WHERE THE DATA COMES 5257 04:21:40,455 --> 04:21:43,725 FROM. 5258 04:21:43,725 --> 04:21:46,961 AUTHOR SHARING IT WITH ME, I'M 5259 04:21:46,961 --> 04:21:48,463 NOT SHARING IT WITH THEM. 5260 04:21:48,463 --> 04:21:51,032 WE HAD A TOTALLY DIFFERENT 5261 04:21:51,032 --> 04:21:54,102 CONVERSATION AND FLIP THINGS 180 5262 04:21:54,102 --> 04:21:55,170 DEGREES BECAUSE OF THAT 5263 04:21:55,170 --> 04:22:02,844 EXPERIENCE. 5264 04:22:02,844 --> 04:22:04,446 I DO THINK THE POLICIES ARE 5265 04:22:04,446 --> 04:22:09,584 HELPFUL BECAUSE EVERY TIME 5266 04:22:09,584 --> 04:22:12,053 THERE'S A NEW PROJECT YOU HAVE 5267 04:22:12,053 --> 04:22:13,721 NEGOTIATE A BRAND NEW DATA 5268 04:22:13,721 --> 04:22:14,489 OWNERSHIP AGREEMENT. 5269 04:22:14,489 --> 04:22:15,490 THERE ARE SOME PARTICULARS WITH 5270 04:22:15,490 --> 04:22:18,426 CERTAIN PROJECTS THAT YOU NEED 5271 04:22:18,426 --> 04:22:22,130 TO CERTAINLY TEASE OUT NUANCES 5272 04:22:22,130 --> 04:22:22,997 AND DETAILS AROUND. 5273 04:22:22,997 --> 04:22:27,902 I CAN'T PRETEND TO KNOW ANYTHING 5274 04:22:27,902 --> 04:22:29,938 ABOUT BIO SAMPLES AND SPECIMENS. 5275 04:22:29,938 --> 04:22:35,743 I DO SOCIAL BEHAVIORAL RESEARCH 5276 04:22:35,743 --> 04:22:37,245 BUT I DO GET COMMONALITIES 5277 04:22:37,245 --> 04:22:39,347 ACROSS THE BOARD THAT CAN BE 5278 04:22:39,347 --> 04:22:41,116 ESTABLISHED THROUGH POLICY THAT 5279 04:22:41,116 --> 04:22:43,985 CAN HELP TO SORT OF BE 5280 04:22:43,985 --> 04:22:46,588 GUARDRAILS FOR RESEARCHERS WHO 5281 04:22:46,588 --> 04:22:49,057 DON'T HAVE A DRAW DEGREE WHO ARE 5282 04:22:49,057 --> 04:22:51,659 NOT FAMILIAR WITH TRIBAL 5283 04:22:51,659 --> 04:22:53,728 SOVEREIGNTY. 5284 04:22:53,728 --> 04:22:58,766 I WAS TRAINED AT THE UNIVERSITY 5285 04:22:58,766 --> 04:23:06,174 OF ARIZONA BY TWO LAWYERS AND I 5286 04:23:06,174 --> 04:23:07,342 SEE TRIBAL SOVEREIGNTY AS A HUGE 5287 04:23:07,342 --> 04:23:08,409 BENEFIT FOR TRIBES. 5288 04:23:08,409 --> 04:23:10,145 IT'S AN OPPORTUNITY FOR TRIBES 5289 04:23:10,145 --> 04:23:12,447 TO SAY EXACTLY WHAT THEY WANT TO 5290 04:23:12,447 --> 04:23:19,154 DO AROUND THEIR DATA AND 5291 04:23:19,154 --> 04:23:21,689 ESTABLISH SPECIFIC BOUNDARIES 5292 04:23:21,689 --> 04:23:23,625 AND REQUIREMENTS AND RULES AND 5293 04:23:23,625 --> 04:23:24,459 REGULATIONS THAT UNIVERSITIES 5294 04:23:24,459 --> 04:23:26,294 ARE OBLIGATED TO FOLLOW IF THEY 5295 04:23:26,294 --> 04:23:28,696 WANT TO DO RESEARCH WITHIN THAT 5296 04:23:28,696 --> 04:23:29,597 PARTICULAR COMMUNITY. 5297 04:23:29,597 --> 04:23:34,402 THERE ARE LEGAL SCHOLARS OUT 5298 04:23:34,402 --> 04:23:42,477 THERE LIKE REBECCA SOSSI WHO 5299 04:23:42,477 --> 04:23:49,150 ARGUED IN DOING RESEARCH WITH 5300 04:23:49,150 --> 04:23:50,785 TRIBAL INDIAN COMMUNITIES. 5301 04:23:50,785 --> 04:23:53,521 IF THEY'RE TAKING DNA FROM 5302 04:23:53,521 --> 04:23:54,989 TRIBAL MEMBERS THEN THEY SHOULD 5303 04:23:54,989 --> 04:23:57,158 BE REQUIRED TO GO TO THOSE 5304 04:23:57,158 --> 04:23:59,060 TRIBES AND BE ABLE TO OR SHOULD 5305 04:23:59,060 --> 04:24:00,461 HAVE TO SEEK PERMISSION IN ORDER 5306 04:24:00,461 --> 04:24:02,096 TO DO THAT. 5307 04:24:02,096 --> 04:24:04,699 SO THERE ARE I THINK DISCUSSIONS 5308 04:24:04,699 --> 04:24:08,203 OUT THERE THAT ARE CONTEMN 5309 04:24:08,203 --> 04:24:11,005 POLITICALING FROM A TRIBAL 5310 04:24:11,005 --> 04:24:14,042 SOVEREIGNTY PERSPECTIVE -- 5311 04:24:14,042 --> 04:24:14,776 CONTEMPLATING FROM TRIBAL 5312 04:24:14,776 --> 04:24:15,310 SOVEREIGNTY PERSPECTIVE 5313 04:24:15,310 --> 04:24:16,411 PROTECTING THE DATA. 5314 04:24:16,411 --> 04:24:19,747 THOSE ARE PROBABLY IN EFFECT 5315 04:24:19,747 --> 04:24:24,485 SOMEWHERE AND TRIBES DOING 5316 04:24:24,485 --> 04:24:28,323 GENETIC RESEARCH ACROSS THE 5317 04:24:28,323 --> 04:24:34,229 U.S. IN THEIR OWN JURISDICTIONS. 5318 04:24:34,229 --> 04:24:37,165 I THINK IT WOULD BE AN 5319 04:24:37,165 --> 04:24:39,367 INTERESTING INVESTIGATION AND AN 5320 04:24:39,367 --> 04:24:41,369 OPPORTUNITY FOR THE REST OF US 5321 04:24:41,369 --> 04:24:45,907 TO LEARN THE PARAMETERS FOR 5322 04:24:45,907 --> 04:24:46,941 DOING THAT RESEARCH AND 5323 04:24:46,941 --> 04:24:48,910 POSSIBILITY OF SETTING 5324 04:24:48,910 --> 04:24:50,011 PROTECTIONS AND PUTTING THOSE IN 5325 04:24:50,011 --> 04:24:59,854 PLACE AT THE SAME TIME LEARNING 5326 04:24:59,854 --> 04:25:00,989 WHAT THE RESEARCH CAN DO FOR 5327 04:25:00,989 --> 04:25:01,289 COMMUNITIES. 5328 04:25:01,289 --> 04:25:04,459 I'M CURRENTLY WORKING WITH 5329 04:25:04,459 --> 04:25:06,995 TRIBAL COLLEGES ALONG WITH 5330 04:25:06,995 --> 04:25:07,662 COLLEAGUES AT THE AMERICANS FOR 5331 04:25:07,662 --> 04:25:09,831 INDIAN OPPORTUNITY. 5332 04:25:09,831 --> 04:25:11,699 THEY HAVE AN INDIGENOUS 5333 04:25:11,699 --> 04:25:13,701 COLLECTIVE AND WE'RE FUNDED BY 5334 04:25:13,701 --> 04:25:17,005 THE FDA AND WE'RE ACTUALLY DOING 5335 04:25:17,005 --> 04:25:20,008 QUALITATIVE DATA RESEARCH WITH 5336 04:25:20,008 --> 04:25:23,144 TRIBAL COMMUNITIES AND COLLEGE 5337 04:25:23,144 --> 04:25:25,747 COMMUNITIES AROUND WHAT ARE SOME 5338 04:25:25,747 --> 04:25:30,918 OF THE EXPECTATIONS OF COMMUNITY 5339 04:25:30,918 --> 04:25:37,825 MEMBERS AROUND BIOMEDICAL 5340 04:25:37,825 --> 04:25:38,793 RESEARCH AND EXPECTATIONS. 5341 04:25:38,793 --> 04:25:40,028 THERE'S BEEN FEAR AND HARM AND 5342 04:25:40,028 --> 04:25:42,430 PEOPLE ARE WORRIED ABOUT THAT 5343 04:25:42,430 --> 04:25:47,635 AND AT THE SAME TIME PEOPLE WANT 5344 04:25:47,635 --> 04:25:49,070 TO HAVE THE CONVERSATION. 5345 04:25:49,070 --> 04:25:50,938 FROM A POLICY PERSPECTIVE HOW DO 5346 04:25:50,938 --> 04:25:53,274 WE HOLD THE SPACE TO HAVE THAT 5347 04:25:53,274 --> 04:25:53,641 CONVERSATION? 5348 04:25:53,641 --> 04:25:59,647 WHERE'S THE FUNDING TO DO THAT? 5349 04:25:59,647 --> 04:26:00,915 IT'S CHALLENGING TO BRING THAT 5350 04:26:00,915 --> 04:26:01,949 TOGETHER AND PEOPLE HAVE 5351 04:26:01,949 --> 04:26:02,417 COMMITMENTS. 5352 04:26:02,417 --> 04:26:06,721 HOW DO WE ENSURE WE HAVE ALL THE 5353 04:26:06,721 --> 04:26:08,156 RESOURCES WE NEED TO HEAR FROM 5354 04:26:08,156 --> 04:26:09,691 COMMUNITY AND UNDERSTAND HOW TO 5355 04:26:09,691 --> 04:26:10,525 GET THIS RIGHT? 5356 04:26:10,525 --> 04:26:12,060 WHAT ARE SOME THINGS PEOPLE NEED 5357 04:26:12,060 --> 04:26:17,498 TO HAVE IN PLACE IN ORDER FOR 5358 04:26:17,498 --> 04:26:23,905 THEM TO RESEARCH AS A VIABLE 5359 04:26:23,905 --> 04:26:25,340 OPPORTUNITY AND SOMETHING TO 5360 04:26:25,340 --> 04:26:26,207 ENGAGE WITH? 5361 04:26:26,207 --> 04:26:32,013 I THINK THERE ARE WAYS TO DO IT. 5362 04:26:32,013 --> 04:26:35,516 THE CHALLENGE IS IN SOME DETAILS 5363 04:26:35,516 --> 04:26:37,185 AND CHARACTERISTIC OF THE 5364 04:26:37,185 --> 04:26:40,455 RESEARCH AND WHAT EXPECTATIONS 5365 04:26:40,455 --> 04:26:44,459 ARE OF THE COMMUNITY. 5366 04:26:44,459 --> 04:26:48,429 IT'S EXCITING FOR ME TO 5367 04:26:48,429 --> 04:26:49,030 DR. POODRY'S POINT EARLIER 5368 04:26:49,030 --> 04:26:51,399 THERE'S CERTAINLY A NEED TO 5369 04:26:51,399 --> 04:26:53,368 PROVIDE MORE TRAINING BECAUSE 5370 04:26:53,368 --> 04:26:55,169 WE'RE ALWAYS HAVING THIS 5371 04:26:55,169 --> 04:26:55,570 CONVERSATION. 5372 04:26:55,570 --> 04:26:57,038 I'VE BEEN DOING THIS 20 YEARS 5373 04:26:57,038 --> 04:26:57,338 NOW. 5374 04:26:57,338 --> 04:26:59,540 I CAN'T BELIEVE I JUST SAID 5375 04:26:59,540 --> 04:26:59,774 THAT. 5376 04:26:59,774 --> 04:27:10,284 SEEMS LIKE A BLINK OF AN EYE. 5377 04:27:13,087 --> 04:27:16,290 THIS CONVERSATION HAS COME UP SO 5378 04:27:16,290 --> 04:27:19,160 MANY TIMES AND IF WE'RE ABLE TO 5379 04:27:19,160 --> 04:27:22,897 DEVELOP TOOL KITS AND MANY HAVE 5380 04:27:22,897 --> 04:27:23,731 BEEN CREATED IN THE PAST THOSE 5381 04:27:23,731 --> 04:27:25,233 ARE TO BE REVISITED AND EXPANDED 5382 04:27:25,233 --> 04:27:29,804 AND HAVE MORE DETAILS BECAUSE 5383 04:27:29,804 --> 04:27:34,942 THE NATURE OF DATA IS CHANGING. 5384 04:27:34,942 --> 04:27:36,477 PEOPLE ARE TALKED ABOUT BIG DATA 5385 04:27:36,477 --> 04:27:38,646 SETS AND WHAT ABOUT DATA IN THE 5386 04:27:38,646 --> 04:27:38,980 CLOUD. 5387 04:27:38,980 --> 04:27:40,882 AS LONG AS YOU LOG INTO AN APP 5388 04:27:40,882 --> 04:27:43,684 YOU'RE SIGNING AWAY YOUR DATA. 5389 04:27:43,684 --> 04:27:48,456 IF YOU'RE TRACKING HEALTH 5390 04:27:48,456 --> 04:27:50,291 INFORMATION LIKE BLOOD PRESSURE 5391 04:27:50,291 --> 04:27:58,299 ON YOUR PHONE YOUR INFORMATION 5392 04:27:58,299 --> 04:28:00,468 IS GOING SOMEWHERE AND SOME 5393 04:28:00,468 --> 04:28:02,370 TRIBES ARE LOOKING AT THE RISK 5394 04:28:02,370 --> 04:28:03,871 OF OVERDOSE USING PHONE DATA AND 5395 04:28:03,871 --> 04:28:05,506 THAT COULD BE SUPER HELPFUL. 5396 04:28:05,506 --> 04:28:12,447 HOW DO WE PROTECT THE 5397 04:28:12,447 --> 04:28:16,117 INDIVIDUALS WHOSE INFORMATION 5398 04:28:16,117 --> 04:28:17,351 WE'RE USING TO PROJECT DATA FOR 5399 04:28:17,351 --> 04:28:18,619 RISK YEAR COMMUNITIES. 5400 04:28:18,619 --> 04:28:24,492 I DON'T KNOW I HAVE ANSWERS BUT 5401 04:28:24,492 --> 04:28:26,461 THERE'S POSSIBILITIES AND SHOULD 5402 04:28:26,461 --> 04:28:28,496 EXPLORE THEM IN MORE DETAIL AND 5403 04:28:28,496 --> 04:28:30,298 PASS THEM TO THE NEXT GENERATION 5404 04:28:30,298 --> 04:28:31,165 OF RESEARCHERS TO CONTINUE TO 5405 04:28:31,165 --> 04:28:37,839 BUILD ON THAT. 5406 04:28:37,839 --> 04:28:39,874 >> ARE YOU MOVING ON TO THE NEXT 5407 04:28:39,874 --> 04:28:41,342 QUESTION OR CAN I SAY SOMETHING? 5408 04:28:41,342 --> 04:28:46,180 WHEN I SAW THE QUESTION I WAS 5409 04:28:46,180 --> 04:28:47,782 THINKING AND I APPRECIATE THE 5410 04:28:47,782 --> 04:28:51,552 INPUT FROM OTHER PEOPLE LIKE WE 5411 04:28:51,552 --> 04:28:52,453 SHOULD HAVE AN ATTORNEY. 5412 04:28:52,453 --> 04:28:54,322 ANYWAY, I WAS THINKING ABOUT IT 5413 04:28:54,322 --> 04:28:56,357 IN TERMS OF SOME OF THE THINGS 5414 04:28:56,357 --> 04:28:58,726 WE'RE DOING AND I THINK 5415 04:28:58,726 --> 04:28:59,827 DEFINITELY A POLICY WOULD BE 5416 04:28:59,827 --> 04:29:01,796 HELPFUL SO EACH OF THESE GROUPS 5417 04:29:01,796 --> 04:29:07,168 DON'T HAVE TO DO AN INDIVIDUAL 5418 04:29:07,168 --> 04:29:12,473 NEGOTIATION WITH WHOEVER. 5419 04:29:12,473 --> 04:29:13,207 TALKING ABOUT A DATA SHARING 5420 04:29:13,207 --> 04:29:15,243 POLICY YOU HAVE TO AGREE TO WHEN 5421 04:29:15,243 --> 04:29:17,078 YOU SUBMIT YOUR GRANT AND ITS IT 5422 04:29:17,078 --> 04:29:17,445 GETS AWARDED. 5423 04:29:17,445 --> 04:29:19,146 I WAS THINKING IN THE CONTEXT OF 5424 04:29:19,146 --> 04:29:29,257 THAT. 5425 04:29:32,527 --> 04:29:34,395 WHEN YOU HAVE A PROPOSAL JUST 5426 04:29:34,395 --> 04:29:37,164 BECAUSE IT HASN'T BEEN DONE IN 5427 04:29:37,164 --> 04:29:39,534 YOUR TRIBE OR NATIVE HAWAIIANS 5428 04:29:39,534 --> 04:29:40,401 IS NOT JUSTIFICATION ENOUGH. 5429 04:29:40,401 --> 04:29:45,373 YOU HAVE TO DO BETTER THAN THAT 5430 04:29:45,373 --> 04:29:47,508 IF YOU WANT TO GET OUR DATA AND 5431 04:29:47,508 --> 04:29:49,443 BEFORE WE RELEASE IT AND THAT 5432 04:29:49,443 --> 04:29:58,185 WOULD BE EXPECTED OF EVERYBODY. 5433 04:29:58,185 --> 04:30:00,054 YOU THINK THE INVESTIGATOR HAS 5434 04:30:00,054 --> 04:30:05,393 TO EXPLAIN WHAT THEY PLANT TO DO 5435 04:30:05,393 --> 04:30:08,796 WITH THE DATA YOU'RE SHARING BY 5436 04:30:08,796 --> 04:30:10,464 NIH POLICY IN THE CONTEXT OF 5437 04:30:10,464 --> 04:30:10,932 INDIGENOUS COMMUNITY. 5438 04:30:10,932 --> 04:30:13,067 HOW WILL IT HELP THE TRIBE AND 5439 04:30:13,067 --> 04:30:15,369 COMMUNITY, WHAT HAVE YOU AND 5440 04:30:15,369 --> 04:30:16,671 EXPLAINS THE INTENT AND 5441 04:30:16,671 --> 04:30:18,773 EXPECTATION OF WHAT THEY MAY 5442 04:30:18,773 --> 04:30:19,006 FIND. 5443 04:30:19,006 --> 04:30:20,808 THAT WOULD BE CONSISTENT WITH 5444 04:30:20,808 --> 04:30:25,046 WHAT PEOPLE SHOULD BE DOING 5445 04:30:25,046 --> 04:30:25,379 ANYWAY. 5446 04:30:25,379 --> 04:30:28,349 SO THAT SHOULD BE DONE PRIOR TO 5447 04:30:28,349 --> 04:30:30,651 GEKT ACCESS TO THE DATA, PRIOR 5448 04:30:30,651 --> 04:30:35,990 TO THE PAPER BEING SUBMITTED AND 5449 04:30:35,990 --> 04:30:38,693 ALSO HAVE A PLAN FOR HOW THIS 5450 04:30:38,693 --> 04:30:40,928 DATA WILL BE SHARED WITH THE 5451 04:30:40,928 --> 04:30:41,195 COMMUNITY. 5452 04:30:41,195 --> 04:30:45,600 SO IF YOU'RE ASKING TO ANALYZE A 5453 04:30:45,600 --> 04:30:47,201 SUBSET OF THEIR DATA YOU HAVE TO 5454 04:30:47,201 --> 04:30:48,336 EXPLAIN HOW IT WILL BE SHARED 5455 04:30:48,336 --> 04:30:49,670 WITH THE COMMUNITY IDEALLY 5456 04:30:49,670 --> 04:30:53,841 BEFORE IT GETS SUBMITTED AS A 5457 04:30:53,841 --> 04:30:54,041 PAPER. 5458 04:30:54,041 --> 04:30:55,943 AND ALL OF THAT SOUNDS SIMPLE 5459 04:30:55,943 --> 04:30:59,146 ENOUGH BUT DOES TAKE TIME AND SO 5460 04:30:59,146 --> 04:31:02,883 THE REGULATOR NEEDS TO THINK 5461 04:31:02,883 --> 04:31:03,651 ABOUT PLANNING AHEAD BECAUSE 5462 04:31:03,651 --> 04:31:06,087 WE'RE NOT GOING TO RUSH IT 5463 04:31:06,087 --> 04:31:07,021 THROUGH JUST BECAUSE THE GRANT 5464 04:31:07,021 --> 04:31:13,794 CYCLE'S COMING UP OR WHATEVER. 5465 04:31:13,794 --> 04:31:15,896 THE SAME QUESTION WAS GETTING 5466 04:31:15,896 --> 04:31:21,002 SECONDARY APPROVAL AND RECONSENT 5467 04:31:21,002 --> 04:31:21,936 ALWAYS REQUIRED. 5468 04:31:21,936 --> 04:31:28,476 I THINK KARINA YOU SAID YES. 5469 04:31:28,476 --> 04:31:33,714 OKAY, DONE. 5470 04:31:33,714 --> 04:31:38,953 >> GOING BACK TO BEST PRACTICES 5471 04:31:38,953 --> 04:31:41,422 DEPENDS ON WHOSE ETHICS AND THE 5472 04:31:41,422 --> 04:31:44,458 BELMONT REPORT AND IT'S OUTDATED 5473 04:31:44,458 --> 04:31:47,094 BECAUSE IT WAS MEANT FOR A 5474 04:31:47,094 --> 04:31:52,166 TISSUE TYPE AND A LITTLE BIT ON 5475 04:31:52,166 --> 04:31:54,702 DATA WITH THE DOCUMENT NOW WE 5476 04:31:54,702 --> 04:32:00,174 CAN REIDENTIFY A NUMBER OF US 5477 04:32:00,174 --> 04:32:03,044 AND TALK ABOUT FAIRNESS AND 5478 04:32:03,044 --> 04:32:06,681 ETHICS TO DATA WAS NOT 5479 04:32:06,681 --> 04:32:07,815 REFLECTIVE OF INDIGENOUS ETHICS 5480 04:32:07,815 --> 04:32:08,983 THE MINUTE IT WAS EXTRACTED. 5481 04:32:08,983 --> 04:32:12,353 IN TERMS OF COMMUNITIES WHO 5482 04:32:12,353 --> 04:32:14,855 PROVIDE THE DATA RESPONSIBLE FOR 5483 04:32:14,855 --> 04:32:16,457 BRINGING INNOVATION OF RESEARCH 5484 04:32:16,457 --> 04:32:22,063 WE AS NATIVE PEOPLES ARE SHUT 5485 04:32:22,063 --> 04:32:26,267 OUT AND IT FIELD LIKE NIH 5486 04:32:26,267 --> 04:32:28,869 RESEARCHERS SEEM TO ONLY RESPECT 5487 04:32:28,869 --> 04:32:33,074 DATA SOVEREIGNTY WHEN CODIFIED 5488 04:32:33,074 --> 04:32:39,346 BY LAW AND WE DON'T HAVE ENOUGH 5489 04:32:39,346 --> 04:32:42,983 LAWYERS AND EXPERTISE OF BIO 5490 04:32:42,983 --> 04:32:44,018 MEDICAL SCIENTISTS BUT SEEMS 5491 04:32:44,018 --> 04:32:46,187 WE'RE CONSTANTLY BRINGING IN THE 5492 04:32:46,187 --> 04:32:48,055 TRIBAL BIG LEAGUES EVERY TIME WE 5493 04:32:48,055 --> 04:32:55,529 NEED TO HAVE A STOP GAP MEASURE 5494 04:32:55,529 --> 04:32:58,299 WHEN WE FIND A LOOPHOLE THAT 5495 04:32:58,299 --> 04:32:59,533 NEED TO BE CLOSED. 5496 04:32:59,533 --> 04:33:01,902 GOING BACK TO STEWARDSHIP AND 5497 04:33:01,902 --> 04:33:05,773 RELATIONALITY, THE CONCEPTS MAKE 5498 04:33:05,773 --> 04:33:10,644 MORE SENSE WHEN YOU SEE HOW 5499 04:33:10,644 --> 04:33:18,919 RELATIONAL THE DATA IS AND I 5500 04:33:18,919 --> 04:33:20,554 HAVE 60 FIRST COUSINS ALONE. 5501 04:33:20,554 --> 04:33:23,958 I'M SCARED EVERY TIME I THINK 5502 04:33:23,958 --> 04:33:25,893 ONE WILL CONTRIBUTE TO DATA WITH 5503 04:33:25,893 --> 04:33:27,461 ANCESTRY. 5504 04:33:27,461 --> 04:33:31,165 WHEN I THIS UP AS SOMETHING WE 5505 04:33:31,165 --> 04:33:34,969 NEEDED TO ACKNOWLEDGE THE 5506 04:33:34,969 --> 04:33:36,737 FEEDBACK I GOT WAS PEOPLE DIDN'T 5507 04:33:36,737 --> 04:33:37,838 ACKNOWLEDGE RISK WAS A THING IN 5508 04:33:37,838 --> 04:33:40,474 THE ROOM AT THE ALL OF US 5509 04:33:40,474 --> 04:33:42,376 PROGRAM. 5510 04:33:42,376 --> 04:33:45,146 AND WE NEED AN ACKNOWLEDGEMENT 5511 04:33:45,146 --> 04:33:50,084 THAT EXISTS ACROSS THE NIH 5512 04:33:50,084 --> 04:33:52,453 RECOGNIZED AND RELATIONALITY 5513 04:33:52,453 --> 04:33:55,156 MAKE SENSE ACROSS DATA TYPES AND 5514 04:33:55,156 --> 04:33:56,690 STEWARDSHIP ON THE FRONTIER OF 5515 04:33:56,690 --> 04:34:05,866 A.I. 5516 04:34:05,866 --> 04:34:12,039 WE TALKED ABOUT ORGANIZATIONS 5517 04:34:12,039 --> 04:34:13,941 UPENDING NOTIONS OF OWNERSHIP 5518 04:34:13,941 --> 04:34:19,180 FOR TWO DECADES AND LOOKING TO 5519 04:34:19,180 --> 04:34:19,647 MODELS OF INDIGENOUS 5520 04:34:19,647 --> 04:34:29,857 STEWARDSHIP. 5521 04:34:36,997 --> 04:34:38,165 I THINK IT'S LOW ON BATTERY. 5522 04:34:38,165 --> 04:34:48,542 >> CAN YOU START OVER? 5523 04:34:53,247 --> 04:34:54,748 >> SOMETHING, SOMETHING, 5524 04:34:54,748 --> 04:34:55,950 SOMETHING, ALL OF US. 5525 04:34:55,950 --> 04:34:58,986 WHEN THE DATA CONSORTIUM STARTED 5526 04:34:58,986 --> 04:35:01,155 AS A NONPROFIT ONE THING WE HAD 5527 04:35:01,155 --> 04:35:05,292 TO STATE WAS A CLAUSE OF 5528 04:35:05,292 --> 04:35:05,593 DISSOLUTION. 5529 04:35:05,593 --> 04:35:13,901 WHAT HAPPENS TO OUR ASSETS WHEN 5530 04:35:13,901 --> 04:35:15,903 THE NON-PROFIT ENDS. 5531 04:35:15,903 --> 04:35:19,306 WE CITED WE'D ACT AS STEWARDS OF 5532 04:35:19,306 --> 04:35:22,109 THE DATA BECAUSE WE DIDN'T WANT 5533 04:35:22,109 --> 04:35:23,811 AUTHORITY OVER DNA AS AN ASSET 5534 04:35:23,811 --> 04:35:26,280 SINCE THEY CAN HAVE A COMMERCIAL 5535 04:35:26,280 --> 04:35:29,049 VALUE AND THAT'S UP TO TRIBES TO 5536 04:35:29,049 --> 04:35:31,151 RECONCILE FOR THEMSELVES BUT 5537 04:35:31,151 --> 04:35:36,023 THERE'S ALSO A DANGEROUS 5538 04:35:36,023 --> 04:35:42,463 QUESTION HERE ON ATTACHING A 5539 04:35:42,463 --> 04:35:46,333 DOLLAR VALUE ON SOMETHING 5540 04:35:46,333 --> 04:35:47,835 ETHICALLY HUMAN AND THEY DIDN'T 5541 04:35:47,835 --> 04:35:48,636 WANT TO TOUCH BUT COMMERCIAL 5542 04:35:48,636 --> 04:35:52,740 COMPANIES DO IT ALL THE TIME. 5543 04:35:52,740 --> 04:35:56,410 AND WHEN WE LOOK AT DATA 5544 04:35:56,410 --> 04:35:58,078 REPOSITORIES RESEARCHERS ARE 5545 04:35:58,078 --> 04:36:00,214 FINDING IT PROBLEMATIC 5546 04:36:00,214 --> 04:36:00,948 INDIGENOUS PEOPLE ARE TAKING 5547 04:36:00,948 --> 04:36:02,182 STEWARDSHIP OF THE DATA. 5548 04:36:02,182 --> 04:36:03,550 THEY SAID TIME AND TIME AGAIN IT 5549 04:36:03,550 --> 04:36:09,823 REMOVES OUR ACCESS TO DATA THEY 5550 04:36:09,823 --> 04:36:13,961 SAY NOT ACKNOWLEDGING THEIR OWN 5551 04:36:13,961 --> 04:36:24,538 HIP -- HYPOCRISY AND I 5552 04:36:24,538 --> 04:36:28,976 MENTIONED EARLIER THE DYNAMIC 5553 04:36:28,976 --> 04:36:31,478 CONSENT SHOULD BE THE NORM LOOK 5554 04:36:31,478 --> 04:36:34,348 AT METHODS ROOTED IN SMART 5555 04:36:34,348 --> 04:36:38,385 CONTRACTS WHICH ARE DIGITAL 5556 04:36:38,385 --> 04:36:40,654 CONTRACTS EXECUTED WHEN SOME PRE 5557 04:36:40,654 --> 04:36:42,489 DETERMINED AGREED UPON TERMS AND 5558 04:36:42,489 --> 04:36:44,458 CONDITIONS ARE MET AND PLACE 5559 04:36:44,458 --> 04:36:49,964 WHEN WE HAVE INDIGENOUS PEOPLES 5560 04:36:49,964 --> 04:36:52,900 CREATING SERVERS THAT WORK UNDER 5561 04:36:52,900 --> 04:36:57,304 TRIBAL JURISDICTIONS AND PLACE 5562 04:36:57,304 --> 04:37:02,309 COMMUNITY MEMBERS WITH ACCESS TO 5563 04:37:02,309 --> 04:37:07,147 THE DATA AND EVERY YEAR MORE AND 5564 04:37:07,147 --> 04:37:17,691 MORE TRIBAL NATIONS ARE BECOMING 5565 04:37:32,539 --> 04:37:35,242 LET IGGOUS AND WE NEED TO THINK 5566 04:37:35,242 --> 04:37:39,713 AT DATA TRANSFER, OWNERSHIP USE 5567 04:37:39,713 --> 04:37:40,481 AND ACCESS AGREEMENT IN WHICH 5568 04:37:40,481 --> 04:37:42,616 TRIBAL NATIONS ARE THE AGENT OF 5569 04:37:42,616 --> 04:37:45,753 AUTHORITY BY DEFAULT OPPOSED TO 5570 04:37:45,753 --> 04:37:50,758 HAVING TO CONSTANTLY REDRAFT THE 5571 04:37:50,758 --> 04:37:55,195 CONTRACT TERMS SO WE'RE 5572 04:37:55,195 --> 04:37:58,732 WRESTLING AWAY THE AUTHORITY FOR 5573 04:37:58,732 --> 04:38:00,100 UNIVERSITIES WHO PROBABLY 5574 04:38:00,100 --> 04:38:01,568 COLLECT DATA IN AN UNCONSENTED 5575 04:38:01,568 --> 04:38:06,306 FASHION TO BEGIN WITH. 5576 04:38:06,306 --> 04:38:08,208 WE HAVE TO RECOGNIZE GENOMIC 5577 04:38:08,208 --> 04:38:18,719 DATA IS VIABLE ESPECIALLY FOR 5578 04:38:21,488 --> 04:38:22,489 AND INDIVIDUALS ARE NOT 5579 04:38:22,489 --> 04:38:24,458 CONTRIBUTING TO CELL LINES, THE 5580 04:38:24,458 --> 04:38:28,562 LEGACY BIO ELECTIONS ARE EVEN 5581 04:38:28,562 --> 04:38:36,003 MORE VALUABLE. 5582 04:38:36,003 --> 04:38:37,905 THEY'RE BEING BOUGHT AND SOLD 5583 04:38:37,905 --> 04:38:39,073 LIKE BASEBALL CARDS. 5584 04:38:39,073 --> 04:38:39,673 THERE'S A SHADOW INDUSTRY OF 5585 04:38:39,673 --> 04:38:49,950 THIS OCCURRING. 5586 04:38:57,591 --> 04:39:00,461 IT FEELS LIKE I'M TRYING TO 5587 04:39:00,461 --> 04:39:02,663 ENCOURAGE THEM TO DO THE RIGHT 5588 04:39:02,663 --> 04:39:05,199 THING AND IT JUST GETS SHARED TO 5589 04:39:05,199 --> 04:39:06,133 A CORPORATION. 5590 04:39:06,133 --> 04:39:07,167 ANYWAY, HOPEFULLY WE CAN STOP 5591 04:39:07,167 --> 04:39:17,277 THAT. 5592 04:39:29,056 --> 04:39:31,658 >> I WANTED TO TALK ABOUT KEY 5593 04:39:31,658 --> 04:39:36,463 INGREDIENTS AND SEEMS LIKE 5594 04:39:36,463 --> 04:39:40,200 THERE'S SO MANY COMPONENTS AND 5595 04:39:40,200 --> 04:39:41,068 I'M APPRECIATE OF THE 5596 04:39:41,068 --> 04:39:41,969 OPPORTUNITY TO THINK OF BEST 5597 04:39:41,969 --> 04:39:43,170 PRACTICES AND HOW TO DESCRIBE 5598 04:39:43,170 --> 04:39:46,206 THAT AND MAKE THAT AVAILABLE FOR 5599 04:39:46,206 --> 04:39:46,473 EVERYONE. 5600 04:39:46,473 --> 04:39:54,848 AGAIN, I THINK SO MANY TIMES 5601 04:39:54,848 --> 04:39:56,450 WE'RE STARTING NEW AND HAVING 5602 04:39:56,450 --> 04:40:04,458 GUIDELINES IS HELPFUL. 5603 04:40:04,458 --> 04:40:12,799 THERE'S DATA INTERPRITAT PRPRPR 5604 04:40:12,799 --> 04:40:14,001 IT'S IMPORTANT TO HAVE MEMBERS 5605 04:40:14,001 --> 04:40:16,036 AT THE TABLE HAVING DISCUSSIONS 5606 04:40:16,036 --> 04:40:17,671 ABOUT FIRST WHAT KIND OF DATA DO 5607 04:40:17,671 --> 04:40:20,140 WE WANT TO COLLECT AND THEN HOW 5608 04:40:20,140 --> 04:40:23,076 DO WE GO ABOUT DOING THAT IN A 5609 04:40:23,076 --> 04:40:24,478 CULTURALLY RESPECTFUL WAY AND 5610 04:40:24,478 --> 04:40:34,288 HOW DO WE INTERPRET IT THAT IS 5611 04:40:34,288 --> 04:40:43,197 STRENGTH BASED RATHER THAN AND 5612 04:40:43,197 --> 04:40:47,401 SOME REQUIRE A DISSEMINATION 5613 04:40:47,401 --> 04:40:50,637 PLAN AS PART OF THEIR 5614 04:40:50,637 --> 04:40:50,938 APPLICATION. 5615 04:40:50,938 --> 04:40:51,672 THAT'S IMPORTANT TO THINK ABOUT 5616 04:40:51,672 --> 04:40:52,940 FROM THE BEGINNING. 5617 04:40:52,940 --> 04:40:57,511 HOW IS THIS INFORMATION GOING TO 5618 04:40:57,511 --> 04:41:01,081 BE DISSEMINATED BACK TO THE 5619 04:41:01,081 --> 04:41:03,784 COMMUNITY AND WIDELY AND 5620 04:41:03,784 --> 04:41:05,552 ENSURING COMMUNITY MEMBERS ARE 5621 04:41:05,552 --> 04:41:07,487 APART OF THAT PROCESS AND RIGHT, 5622 04:41:07,487 --> 04:41:08,555 FRONT AND CENTER MAKING 5623 04:41:08,555 --> 04:41:12,459 DISSEMINATION OF THAT 5624 04:41:12,459 --> 04:41:16,964 INFORMATION TOO. 5625 04:41:16,964 --> 04:41:20,100 >> I'M NOT GOING TO SAY THIS AS 5626 04:41:20,100 --> 04:41:21,768 ARTICULATE AS THE PEOPLE WHO 5627 04:41:21,768 --> 04:41:22,536 ALREADY SAID THIS BECAUSE YOU 5628 04:41:22,536 --> 04:41:24,471 TRAINED ME AND I READ YOUR 5629 04:41:24,471 --> 04:41:24,705 PAPERS. 5630 04:41:24,705 --> 04:41:30,010 I FEEL EXCITED TON A PART OF THE 5631 04:41:30,010 --> 04:41:32,679 PANEL. 5632 04:41:32,679 --> 04:41:36,083 I DON'T WORK WITH NATIVE TISSUES 5633 04:41:36,083 --> 04:41:38,585 BECAUSE I'M NOT PROPERLY TRAINED 5634 04:41:38,585 --> 04:41:40,954 TO WORK WITH PROPERLY TISSUES. 5635 04:41:40,954 --> 04:41:42,789 I DON'T WANT TO MISUSE OUR 5636 04:41:42,789 --> 04:41:43,724 SAMPLES OR WANT SOMEBODY ELSE TO 5637 04:41:43,724 --> 04:41:46,660 COME UP TO ME AND SAY HEY, CAN I 5638 04:41:46,660 --> 04:41:48,128 USE YOUR TISSUE SAMPLES TO 5639 04:41:48,128 --> 04:41:53,200 ANSWER THIS GREAT QUESTION I 5640 04:41:53,200 --> 04:42:00,240 HAVE. 5641 04:42:00,240 --> 04:42:01,208 OPEN SCIENCE AND DATA IS GREAT 5642 04:42:01,208 --> 04:42:02,776 FOR OTHER SYSTEMS. 5643 04:42:02,776 --> 04:42:11,184 IT'S NOT GREAT FOR NATIVE TISSUE 5644 04:42:11,184 --> 04:42:12,085 SAMPLES OR DATA. 5645 04:42:12,085 --> 04:42:13,987 WE CAN'T TRAIN PEOPLE ENOUGH TO 5646 04:42:13,987 --> 04:42:17,424 USE THE DATA RESPECTFULLY AND 5647 04:42:17,424 --> 04:42:21,995 WITH CULTURALLY APPROPRIATE 5648 04:42:21,995 --> 04:42:25,198 QUESTIONS AND WAYS TO TO HANDLE 5649 04:42:25,198 --> 04:42:25,399 DATA. 5650 04:42:25,399 --> 04:42:28,902 EVERY TRIBE HAS A DIFFERENT 5651 04:42:28,902 --> 04:42:36,176 LEVEL AND WE HAVE A DIFFERENT 5652 04:42:36,176 --> 04:42:41,415 RELATIONSHIP TO THE OTHER 5653 04:42:41,415 --> 04:42:41,648 TRIBES. 5654 04:42:41,648 --> 04:42:44,084 I DON'T THINK OR KNOW I CAN 5655 04:42:44,084 --> 04:42:45,619 TRAIN THE NEXT GENERATION. 5656 04:42:45,619 --> 04:42:51,191 IN MY MIND IF YOU'RE GOING TO 5657 04:42:51,191 --> 04:42:58,165 TAKE SAMPLES FROM TRIBES AND 5658 04:42:58,165 --> 04:42:59,299 SHOULD HAVE SAY WHETHER THE DATA 5659 04:42:59,299 --> 04:43:01,001 WILL BE USED IN ANOTHER WAY OR 5660 04:43:01,001 --> 04:43:02,703 WHETHER THE SAMPLES WILL BE USED 5661 04:43:02,703 --> 04:43:04,037 FOR A SPECIFIC QUESTIONS. 5662 04:43:04,037 --> 04:43:05,439 EVERYTHING SHOULD BE RAN THROUGH 5663 04:43:05,439 --> 04:43:10,911 THE TRIBES BECAUSE ME AS AN 5664 04:43:10,911 --> 04:43:12,446 OUTSIDER RESEARCHER IS NOT GOING 5665 04:43:12,446 --> 04:43:14,614 TO KNOW EXACTLY HOW CO WORK WITH 5666 04:43:14,614 --> 04:43:14,815 THEM. 5667 04:43:14,815 --> 04:43:19,219 I SAY UNTRAINED. 5668 04:43:19,219 --> 04:43:20,153 I'M LITERALLY TRAINED. 5669 04:43:20,153 --> 04:43:24,458 KRYSTAL TAUGHT ME ABOUT ETHICS 5670 04:43:24,458 --> 04:43:26,560 AND CONSENT. 5671 04:43:26,560 --> 04:43:27,694 NOT EVERYBODY IS TRAINED IN THAT 5672 04:43:27,694 --> 04:43:29,196 WAY AND I THINK OF THE PEOPLE 5673 04:43:29,196 --> 04:43:30,731 WHO SAY I GOT NIH FUNDING SO I 5674 04:43:30,731 --> 04:43:32,199 SHOULD BE ABLE TO ASK THE 5675 04:43:32,199 --> 04:43:32,632 QUESTION. 5676 04:43:32,632 --> 04:43:37,337 PEOPLE NOT TRAINED IN THE 5677 04:43:37,337 --> 04:43:39,806 HISTORY AND LAW AND DON'T KNOW 5678 04:43:39,806 --> 04:43:41,475 ABOUT THE WAYS OUR TISSUES HAVE 5679 04:43:41,475 --> 04:43:43,210 BEEN MISUSED OR NO BUT DON'T 5680 04:43:43,210 --> 04:43:45,345 UNDERSTAND HOW IT IMPACTS OUR 5681 04:43:45,345 --> 04:43:47,781 COMMUNITIES WILL MISUSE SAMPLES 5682 04:43:47,781 --> 04:43:49,649 AND MAY NOT DO IT MALICIOUSLY 5683 04:43:49,649 --> 04:43:55,455 BUT WILL MISUSE THEM AND IT'S 5684 04:43:55,455 --> 04:44:01,595 GOING TO HURT OUR TRIBES. 5685 04:44:01,595 --> 04:44:04,030 I DON'T SEE ALLOWING THAT TO 5686 04:44:04,030 --> 04:44:04,297 HAPPEN. 5687 04:44:04,297 --> 04:44:05,932 SEE, NOT ARTICULATE. 5688 04:44:05,932 --> 04:44:14,641 >> THAT WAS VERY ARTICULATE. 5689 04:44:14,641 --> 04:44:15,809 A LOT OF CAME FROM AND THAT AND 5690 04:44:15,809 --> 04:44:18,345 HEARD ABOUT TRAINING PROTECTIONS 5691 04:44:18,345 --> 04:44:24,317 AND WANTED TO FOLLOW-UP WITH ONE 5692 04:44:24,317 --> 04:44:26,887 QUESTION WHICH IS THERE ANYTHING 5693 04:44:26,887 --> 04:44:30,557 UNIQUE OR IN ADDITION FOR 5694 04:44:30,557 --> 04:44:31,892 REPOSITORIES AND ARE WE EVEN 5695 04:44:31,892 --> 04:44:33,360 THERE TO THINK ABOUT HOW ARE WE 5696 04:44:33,360 --> 04:44:34,594 THINKING ABOUT REPOSITORIES 5697 04:44:34,594 --> 04:44:36,430 BECAUSE THERE'S SO MUCH THAT 5698 04:44:36,430 --> 04:44:37,464 NEEDS TO BE DONE IN TERMS OF 5699 04:44:37,464 --> 04:44:40,000 TRAINING AND ALL OF THESE OTHER 5700 04:44:40,000 --> 04:44:40,233 THINGS? 5701 04:44:40,233 --> 04:44:42,636 JUST TRYING TO UNDERSTAND IF 5702 04:44:42,636 --> 04:44:45,772 THERE'S ANYTHING IN ADDITION TO 5703 04:44:45,772 --> 04:44:48,475 WHAT'S BEEN SHARED THAT RELATES 5704 04:44:48,475 --> 04:44:51,845 TO REPOSITORIES. 5705 04:44:51,845 --> 04:44:54,047 I KNOW EVERYTHING SAID RELATES 5706 04:44:54,047 --> 04:44:54,815 TO REPOSITORIES BUT TRYING TO 5707 04:44:54,815 --> 04:44:55,949 PULL ANYTHING IN IN ADDITION. 5708 04:44:55,949 --> 04:44:59,786 >> ONE OF THE THINGS IN TERMS OF 5709 04:44:59,786 --> 04:45:02,656 THE SOLUTIONS WOULD BE AND WE 5710 04:45:02,656 --> 04:45:06,193 TRIED THIS AT OUR UNIVERSITY 5711 04:45:06,193 --> 04:45:12,399 WHERE WHEN PEOPLE WRITING 5712 04:45:12,399 --> 04:45:14,835 PROPOSALS IF THEY'RE REQUIRED TO 5713 04:45:14,835 --> 04:45:19,539 EDUCATE WHETHER OR NOT THEY 5714 04:45:19,539 --> 04:45:20,440 INCLUDE AMERICAN ALASKAN PEOPLE 5715 04:45:20,440 --> 04:45:26,146 TO CHECK A BOX AND THAT REQUIRES 5716 04:45:26,146 --> 04:45:30,016 AT LEAST SOME TRAINING BULL THE 5717 04:45:30,016 --> 04:45:31,184 REASON PARTLY IS IT HASN'T TIED 5718 04:45:31,184 --> 04:45:33,920 TO RESOURCES. 5719 04:45:33,920 --> 04:45:38,191 AND SO ONE OF THE THINGS A LOT 5720 04:45:38,191 --> 04:45:45,765 OF US ADVOCATED FOR IS IF THE 5721 04:45:45,765 --> 04:45:54,407 PROPEOSAL OR DOESN'T SEEM TO HEP 5722 04:45:54,407 --> 04:45:56,443 RESEARCH TO GO THINGS THAT HAVE 5723 04:45:56,443 --> 04:46:02,849 DATA REPOSITORY QUESTIONS AND 5724 04:46:02,849 --> 04:46:04,818 RESOURCES TO BUILD RESOURCES 5725 04:46:04,818 --> 04:46:06,887 WITHIN OUR LOCAL TRIBES. 5726 04:46:06,887 --> 04:46:08,955 ONE THING WE HAVEN'T SPOKEN TOO 5727 04:46:08,955 --> 04:46:12,058 A LOT IS VERY MUCH A REALITY FOR 5728 04:46:12,058 --> 04:46:14,661 TRIBAL COMMUNITIES IS USUALLY 5729 04:46:14,661 --> 04:46:15,362 RESEARCH THE ONUS OF THE WORK 5730 04:46:15,362 --> 04:46:24,237 GOES ON THE TRIBAL COMMUNITY. 5731 04:46:24,237 --> 04:46:26,406 THAT'S NOT A PRACTICAL OR 5732 04:46:26,406 --> 04:46:27,774 SUSTAINABLE PRACTICE. 5733 04:46:27,774 --> 04:46:31,177 WE NEED CLEAR DELINEATED WAYS OF 5734 04:46:31,177 --> 04:46:31,978 FUNDING MONEY AND PEOPLE AND 5735 04:46:31,978 --> 04:46:33,914 SOCIAL CAPITAL GOES TO HELP OUR 5736 04:46:33,914 --> 04:46:36,449 TRIBAL COMMUNITIES HAVE THE 5737 04:46:36,449 --> 04:46:37,884 CAPACITY TO DO THESE THINGS. 5738 04:46:37,884 --> 04:46:40,220 HAVE THE TRIBAL ATTORNEYS TO BE 5739 04:46:40,220 --> 04:46:42,322 ABLE TO VET THESE DIFFERENT 5740 04:46:42,322 --> 04:46:45,725 DOCUMENTS AND ALSO TO HAVE THE 5741 04:46:45,725 --> 04:46:46,760 SCIENTIFIC INFRASTRUCTURE TO 5742 04:46:46,760 --> 04:46:49,296 HOUSE REPOSITORIES IF THEY SO 5743 04:46:49,296 --> 04:46:49,896 CHOOSE TO DO SO. 5744 04:46:49,896 --> 04:46:55,936 THE SAME IS TRUE FOR SOCIAL 5745 04:46:55,936 --> 04:46:56,469 SCIENCE RESEARCH. 5746 04:46:56,469 --> 04:46:59,406 HAVING AND WE HAVEN'T BEEN ABLE 5747 04:46:59,406 --> 04:47:04,878 TO PUT TEETH INTO IT AND WE HAVE 5748 04:47:04,878 --> 04:47:06,613 AN OFFICE OF RESEARCH THAT A LOT 5749 04:47:06,613 --> 04:47:07,647 OF FUNDS GO INTO AND DON'T COME 5750 04:47:07,647 --> 04:47:16,456 BACK OUT. 5751 04:47:16,456 --> 04:47:18,992 OR IT'S SEIZED AND IT HAPPENED 5752 04:47:18,992 --> 04:47:20,393 DURING THE PANDEMIC AND FUNDING 5753 04:47:20,393 --> 04:47:21,828 AND THAT WAS DIFFICULT FOR ME 5754 04:47:21,828 --> 04:47:24,097 WAS TO SEE THE MONEY THAT'S 5755 04:47:24,097 --> 04:47:25,966 SUPPOSED TO GO TOWARDS A 5756 04:47:25,966 --> 04:47:27,133 PARTICULAR COMMUNITY REALLY BE 5757 04:47:27,133 --> 04:47:30,170 TAKEN UP BY THE MACHINE OF OUR 5758 04:47:30,170 --> 04:47:30,470 UNIVERSITY. 5759 04:47:30,470 --> 04:47:33,006 AND IT'S NOT UNIQUE FOR OUR 5760 04:47:33,006 --> 04:47:34,841 INSTITUTION BUT IF WE COULD FIND 5761 04:47:34,841 --> 04:47:37,077 A WAY TO CONNECT THE TWO THERE'S 5762 04:47:37,077 --> 04:47:38,712 A DISCONNECT BETWEEN THE 5763 04:47:38,712 --> 04:47:41,948 RESOURCES AND HOW THE RESOURCES 5764 04:47:41,948 --> 04:47:44,417 ARE DISTRIBUTED AND THE NEEDS. 5765 04:47:44,417 --> 04:47:46,353 AND THAT'S TRUE AT A SCIENTIFIC 5766 04:47:46,353 --> 04:47:48,455 LEVEL AS WELL AS SOME WAYS THAT 5767 04:47:48,455 --> 04:47:52,459 WARE -- WAYS WE'RE TALKING 5768 04:47:52,459 --> 04:47:57,030 ABOUT HEALTH AND PART OF THE 5769 04:47:57,030 --> 04:47:57,931 POTENTIAL SOLUTION. 5770 04:47:57,931 --> 04:47:59,499 >> SO I APPRECIATE WHAT YOU'RE 5771 04:47:59,499 --> 04:48:00,533 SAYING AND ACADEMIC INSTITUTIONS 5772 04:48:00,533 --> 04:48:01,334 ARE NOT PERFECT. 5773 04:48:01,334 --> 04:48:04,337 FAR FROM IT. 5774 04:48:04,337 --> 04:48:06,706 I THINK WITH THE DEVELOPMENT OF 5775 04:48:06,706 --> 04:48:17,250 OUR NEW COHORT OF 10,000 WE HAVE 5776 04:48:23,523 --> 04:48:24,724 NEGOTIATED AND IN SOME WAYS 5777 04:48:24,724 --> 04:48:30,130 DEMANDED BUT PRETTY FIRM ON THE 5778 04:48:30,130 --> 04:48:32,999 IDEA THAT WE NEED TO BE ABLE TO 5779 04:48:32,999 --> 04:48:40,473 HAVE A DECISION MAKING 5780 04:48:40,473 --> 04:48:42,909 CHECKPOINT FOR THE STORAGE AND 5781 04:48:42,909 --> 04:48:45,111 USE AND ACCESS AND SO ON AND SO 5782 04:48:45,111 --> 04:48:46,246 FORTH. 5783 04:48:46,246 --> 04:48:48,481 THIS IS LIKE WE JUST TALKED 5784 04:48:48,481 --> 04:48:58,858 ABOUT IT ON THURSDAY. 5785 04:49:07,400 --> 04:49:08,468 WE'VE BEEN STRATEGIC IN 5786 04:49:08,468 --> 04:49:10,537 PROVIDING A JUSTIFICATION FOR 5787 04:49:10,537 --> 04:49:11,638 WHY IT'S NEEDED. 5788 04:49:11,638 --> 04:49:13,339 I THINK NIH KNOWS ABOUT ALL THE 5789 04:49:13,339 --> 04:49:20,447 BAD THINGS THAT HAVE HAPPENED TO 5790 04:49:20,447 --> 04:49:24,484 A LOT OF INDIGENOUS POPULATIOS 5791 04:49:24,484 --> 04:49:25,985 ACROSS THE WORLD AND THEY'RE 5792 04:49:25,985 --> 04:49:27,420 LIKE WELL, WHAT DO YOU WANT TO 5793 04:49:27,420 --> 04:49:29,155 DO IT AND HOW MUCH WILL THE 5794 04:49:29,155 --> 04:49:32,459 COST, HOW MUCH TIME DO YOU NEED? 5795 04:49:32,459 --> 04:49:38,231 THAT'S A DIFFERENT CONVERSATION. 5796 04:49:38,231 --> 04:49:41,267 MANY THANKS TO ALIK AND OTHERS 5797 04:49:41,267 --> 04:49:43,870 ON THE TEAM WHO HAVE EXPERIENCE 5798 04:49:43,870 --> 04:49:49,342 WORKING WITH NATIVE HAWAIIAN 5799 04:49:49,342 --> 04:49:53,646 SAMPLE AND HAVE SEEN THINGS WE 5800 04:49:53,646 --> 04:49:55,248 LEARNED AND TRYING TO CORRECT 5801 04:49:55,248 --> 04:50:02,355 THEM QUICKLY. 5802 04:50:02,355 --> 04:50:09,362 WE'RE ASKING FOR DUPLICATE 5803 04:50:09,362 --> 04:50:11,898 SAMPLE TO BE STORED IN HAWAI'I 5804 04:50:11,898 --> 04:50:13,333 AND THERE'S A COORDINATING 5805 04:50:13,333 --> 04:50:17,670 CENTER SAMPLE AND OUR SAMPLE. 5806 04:50:17,670 --> 04:50:20,473 WE'D LOVE 50/50 BREAKDOWN. 5807 04:50:20,473 --> 04:50:23,076 WE'LL HAVE A CHECK BOX TO HAVE A 5808 04:50:23,076 --> 04:50:25,478 COMMUNITY REVIEW BOARD THAT 5809 04:50:25,478 --> 04:50:28,448 EVERYTHING TO DO WITH NATIVE 5810 04:50:28,448 --> 04:50:29,816 HAWAIIAN PACIFIC ISLANDER DATA 5811 04:50:29,816 --> 04:50:31,885 WILL HAVE TO BE REVIEWED AND US 5812 04:50:31,885 --> 04:50:34,988 AS NPIs IS AN EXTRA WORK WE'LL 5813 04:50:34,988 --> 04:50:40,193 HAVE TO DO TO TRIAGE AND SEE IF 5814 04:50:40,193 --> 04:50:41,394 THE WHOLE COMMUNITY REVIEW BOARD 5815 04:50:41,394 --> 04:50:43,029 NEEDS TO LOOK AT THIS AND DECIDE 5816 04:50:43,029 --> 04:50:45,965 IF IT'S APPROVED, NOT APPROVED, 5817 04:50:45,965 --> 04:50:50,403 REVISED AND RESUBMIT IF YOU 5818 04:50:50,403 --> 04:50:50,904 WANT. 5819 04:50:50,904 --> 04:50:52,238 IT HAS TO HAVE STRONG 5820 04:50:52,238 --> 04:50:53,106 JUSTIFICATION AND OTHER 5821 04:50:53,106 --> 04:50:56,009 PARAMETERS AND GUARDRAILS MANY 5822 04:50:56,009 --> 04:50:57,677 HAVE TALKED ABOUT ALREADY. 5823 04:50:57,677 --> 04:51:08,221 WE HAVE EXPLAINED IT THAT IT'S 5824 04:51:08,922 --> 04:51:11,090 VERY IMPORTANT FOR THEM TO KNOW 5825 04:51:11,090 --> 04:51:12,458 WHERE THEIR SAMPLES ARE GOING 5826 04:51:12,458 --> 04:51:14,861 AND ASK A GROUP DO YOU WANT TO 5827 04:51:14,861 --> 04:51:17,597 BRING YOUR GROUP TO THE BIO 5828 04:51:17,597 --> 04:51:19,065 REPOSITORY STORAGE UNIT IN 5829 04:51:19,065 --> 04:51:22,735 MINNESOTA AND THEY'RE OPEN TO US 5830 04:51:22,735 --> 04:51:24,804 BRINGING A GROUP AND SEEING 5831 04:51:24,804 --> 04:51:25,371 WHERE THEIR KINSHIP WILL BE 5832 04:51:25,371 --> 04:51:35,515 STORED. 5833 04:51:36,850 --> 04:51:44,457 I CAN SEE IN THE FUTURE 5834 04:51:44,457 --> 04:51:46,492 INVESTIGATORS WHO ARE HAWAIIAN 5835 04:51:46,492 --> 04:51:48,461 OR IN OUR COMMUNITY FOR A LONG 5836 04:51:48,461 --> 04:51:49,562 TIME TO START ASKING QUESTIONS 5837 04:51:49,562 --> 04:51:51,231 RELEVANT FROM THE GROUND. 5838 04:51:51,231 --> 04:51:53,099 WE CAN START ASKING OUR 5839 04:51:53,099 --> 04:51:55,335 QUESTIONS. 5840 04:51:55,335 --> 04:51:58,071 THAT'S REALLY IMPORTANT. 5841 04:51:58,071 --> 04:52:01,174 A LIKA HAS DONE A LOT WITH THE 5842 04:52:01,174 --> 04:52:03,676 EXPERTISE AND WHAT WE BRING TO 5843 04:52:03,676 --> 04:52:05,612 THIS COHORT THEY'RE BEGINNING TO 5844 04:52:05,612 --> 04:52:06,379 SEE WE KNOW WHAT WE'RE TALKING 5845 04:52:06,379 --> 04:52:14,053 ABOUT. 5846 04:52:14,053 --> 04:52:17,891 I THINK THAT'S WHY WE'RE MAKING 5847 04:52:17,891 --> 04:52:19,759 HEADWAY. 5848 04:52:19,759 --> 04:52:21,761 DO YOU KNOW THE CULTURAL 5849 04:52:21,761 --> 04:52:23,863 PROTOCOL FOR THE SAMPLES IF 5850 04:52:23,863 --> 04:52:25,331 SOMEONE DECIDES THEY DON'T WANT 5851 04:52:25,331 --> 04:52:27,166 THEIR SAMPLES TO BE THERE 5852 04:52:27,166 --> 04:52:32,739 FOREVER AND THEIR LIKE, NO. 5853 04:52:32,739 --> 04:52:35,041 WE NEED TO FIND A WHY TO SEND IT 5854 04:52:35,041 --> 04:52:43,349 BACK TO US TO DO THE KWUL TURL 5855 04:52:43,349 --> 04:52:45,218 PROTE -- CULTURAL PROTOCOL AND 5856 04:52:45,218 --> 04:52:46,986 THESE ARE QUESTIONS TO ASK 5857 04:52:46,986 --> 04:52:47,854 COLLEAGUES NATIVE AND 5858 04:52:47,854 --> 04:52:48,655 NON-NATIVE. 5859 04:52:48,655 --> 04:52:50,723 I'VE BEEN IN NON-NATIVE COHORTS 5860 04:52:50,723 --> 04:52:51,057 BEFORE. 5861 04:52:51,057 --> 04:52:55,328 WE NEVER ASK THE QUESTIONS 5862 04:52:55,328 --> 04:53:02,168 BECAUSE WE DIDN'T HAVE ENOUGH 5863 04:53:02,168 --> 04:53:03,136 INVESTIGATORS WHO WERE NATIVE 5864 04:53:03,136 --> 04:53:04,470 HAD IT TIED TO THE CULTURE AND 5865 04:53:04,470 --> 04:53:06,806 COMMUNITY. 5866 04:53:06,806 --> 04:53:07,774 I THINK WITH THE POLICY THE 5867 04:53:07,774 --> 04:53:13,346 OFFICE IS GOING TO CREATE IT 5868 04:53:13,346 --> 04:53:15,348 GIVES US AN OPPORTUNITY TO 5869 04:53:15,348 --> 04:53:16,449 WHEREVER YOU ARE IN THE PROCESS 5870 04:53:16,449 --> 04:53:19,919 OF BEING EMPOWERED TO STEWARD 5871 04:53:19,919 --> 04:53:21,788 THESE SAMPLES AS YOUR KINSHIP. 5872 04:53:21,788 --> 04:53:24,190 YOU CAN START TO DO IT BUT I 5873 04:53:24,190 --> 04:53:27,093 HAVE TO SAY I'VE BEEN AT THIS 5874 04:53:27,093 --> 04:53:31,331 FOR A LONG TIME THAT IT TOOK A 5875 04:53:31,331 --> 04:53:33,299 WHILE FOR THIS TO HAPPEN BUT IT 5876 04:53:33,299 --> 04:53:36,803 CAN HAPPEN AND LAST WEEK I WAS 5877 04:53:36,803 --> 04:53:38,171 SO PLEASED TO HEAR WE GOT IT. 5878 04:53:38,171 --> 04:53:40,073 WE UNDERSTAND THE WHY. 5879 04:53:40,073 --> 04:53:42,742 WE JUST WANT TO KNOW THE HOW. 5880 04:53:42,742 --> 04:53:44,677 SO WE HAD ALREADY ANTICIPATED 5881 04:53:44,677 --> 04:53:49,048 THAT AND WE HAD ALREADY COME UP 5882 04:53:49,048 --> 04:53:55,188 WITH A BUDGET AND TIME LINE AND 5883 04:53:55,188 --> 04:54:01,227 THE ACCEPTANCE FOR THE 5884 04:54:01,227 --> 04:54:02,395 PARAMETERS AND EVERYBODY KNOW 5885 04:54:02,395 --> 04:54:04,297 NOW AND IT'S NOT JUST THE NATIVE 5886 04:54:04,297 --> 04:54:06,399 HAWAIIAN STUDY BUT WITH OTHER 5887 04:54:06,399 --> 04:54:11,671 ASIAN AMERICANS WHICH I KNOW WE 5888 04:54:11,671 --> 04:54:14,407 HAVE AN AGGREGATION ISSUE. 5889 04:54:14,407 --> 04:54:15,441 IT'S FAR FROM PERFECT. 5890 04:54:15,441 --> 04:54:17,477 IT CAN BE BETTER BUT AT LATEST 5891 04:54:17,477 --> 04:54:22,148 SOMETHING IF YOU WANT TO 5892 04:54:22,148 --> 04:54:27,687 UNDERSTAND BEST PRACTICES AND I 5893 04:54:27,687 --> 04:54:29,589 DON'T KNOW IF ANYBODY'S FROM 5894 04:54:29,589 --> 04:54:31,691 STRONG HEART BUT THEY VISITED 5895 04:54:31,691 --> 04:54:33,393 WHERE THEIR BIO SPECIMENS WOULD 5896 04:54:33,393 --> 04:54:34,293 BE STORED. 5897 04:54:34,293 --> 04:54:35,828 THEY WALKED THROUGH THE LAB, 5898 04:54:35,828 --> 04:54:38,131 THEY SAW THIS BACK UP GENERATORS 5899 04:54:38,131 --> 04:54:39,866 AND HOW IT WAS GOING TO TO BE 5900 04:54:39,866 --> 04:54:42,335 HANDLED AND SO ON AND SO FORTH 5901 04:54:42,335 --> 04:54:43,336 AND FOR A LOT OF PEOPLE JUST 5902 04:54:43,336 --> 04:54:49,208 BEING IN A LABORATORY SPACE OF 5903 04:54:49,208 --> 04:54:50,576 AN INDUSTRIAL SIZED UNIT IT WAS 5904 04:54:50,576 --> 04:55:00,953 EYE OPENING FOR THEM. 5905 04:55:08,394 --> 04:55:10,329 >> THE REMARK ABOUT THE BELMONT 5906 04:55:10,329 --> 04:55:15,201 REPORT AND THERE WAS A PAPER 5907 04:55:15,201 --> 04:55:16,869 ABOUT AN INDIGENOUS BELMONT 5908 04:55:16,869 --> 04:55:18,538 REPORT BECAUSE WHEN MOST PEOPLE 5909 04:55:18,538 --> 04:55:20,473 THINK ABOUT DATA THEY THINK 5910 04:55:20,473 --> 04:55:22,041 ABOUT IT AS GOLD OR A SYSTEM 5911 04:55:22,041 --> 04:55:24,911 WHERE EVERYBODY GETS TO DRAW OUT 5912 04:55:24,911 --> 04:55:27,280 WATER FOR IRRIGATION BUT THEY 5913 04:55:27,280 --> 04:55:28,314 NEVER PUT ALL THREE THINGS 5914 04:55:28,314 --> 04:55:30,483 TOGETHER LIKE NATIVES DO. 5915 04:55:30,483 --> 04:55:31,984 IT IS GOLD. 5916 04:55:31,984 --> 04:55:33,519 IT IS AN OPEN RESOURCE LIKE 5917 04:55:33,519 --> 04:55:37,123 WATER BUT ALSO A RELATIVE. 5918 04:55:37,123 --> 04:55:39,258 IT'S LIKE A FOSTER CHILD. 5919 04:55:39,258 --> 04:55:41,594 YOU'RE NOT GOING TO GIVE YOUR 5920 04:55:41,594 --> 04:55:44,397 FOSTER CHILD A WAY TO THE SYSTEM 5921 04:55:44,397 --> 04:55:47,667 YOU DON'T KNOW WHAT WILL HAPPEN 5922 04:55:47,667 --> 04:55:48,334 IN THE FUTURE. 5923 04:55:48,334 --> 04:55:49,836 YOU WON'T GIVE THEM AWAY BUT 5924 04:55:49,836 --> 04:55:50,436 THAT'S WHAT THEY'RE ASKING 5925 04:55:50,436 --> 04:55:56,676 INDIGENOUS PEOPLE TO DO IS JUST 5926 04:55:56,676 --> 04:55:57,176 TO TRUST IN THE PROCESS. 5927 04:55:57,176 --> 04:55:59,078 I'M SORRY FOR GOING AWAY FROM 5928 04:55:59,078 --> 04:56:00,746 NIH POLICY BUT RIGHT NOW THESE 5929 04:56:00,746 --> 04:56:05,651 ARE THE ARENAS THESE ARE TALKED 5930 04:56:05,651 --> 04:56:06,686 ABOUT. 5931 04:56:06,686 --> 04:56:08,454 YOU DON'T HEAR HOW GOOGLE IS 5932 04:56:08,454 --> 04:56:12,458 PROTECTING THEIR DATA OR 5933 04:56:12,458 --> 04:56:14,427 REGENERON IS PROTECTING THEIR 5934 04:56:14,427 --> 04:56:17,730 DATA OR HOMELAND SECURITY BUT 5935 04:56:17,730 --> 04:56:18,331 IT'S RELEVANT TO THE 5936 04:56:18,331 --> 04:56:19,799 CONVERSATION BECAUSE THE 5937 04:56:19,799 --> 04:56:21,033 INDIGENOUS GROUPS ARE LIKE THOSE 5938 04:56:21,033 --> 04:56:21,300 ENTITIES. 5939 04:56:21,300 --> 04:56:22,869 THEY HAVE A RIGHT TO PROTECT 5940 04:56:22,869 --> 04:56:23,169 THEIR DATA. 5941 04:56:23,169 --> 04:56:24,470 THEY DON'T HAVE TO PUT IT INTO 5942 04:56:24,470 --> 04:56:34,714 THE COMMENTS. 5943 04:56:35,982 --> 04:56:37,917 SOMEHOW NATIVE PEOPLE BECAME BIO 5944 04:56:37,917 --> 04:56:38,484 PROPERTY. 5945 04:56:38,484 --> 04:56:40,920 LIKE WITH THE IDEA ABOUT PUBLIC 5946 04:56:40,920 --> 04:56:43,055 HEALTH DATA BEING MANDATED BY 5947 04:56:43,055 --> 04:56:47,160 LAW TO SHARE BUT THE STATES 5948 04:56:47,160 --> 04:56:48,561 WON'T COMPLY IS A LENS AND 5949 04:56:48,561 --> 04:56:50,763 CRYSTAL AND I WERE TALKING ABOUT 5950 04:56:50,763 --> 04:56:52,498 THIS, WHAT THEY PRESENT IS 5951 04:56:52,498 --> 04:56:55,334 ETHICAL FROM A CERTAIN LENS BUT 5952 04:56:55,334 --> 04:57:05,745 NOT FROM A NATIVE LENS. 5953 04:57:07,413 --> 04:57:13,019 NAY SAID IF -- THEY SAID IF YOU 5954 04:57:13,019 --> 04:57:14,487 DATA FOR SYPHILIS YOU HAVE TO 5955 04:57:14,487 --> 04:57:16,889 GIVE YOUR ENTIRE ENROLLMENT LIST 5956 04:57:16,889 --> 04:57:20,059 AND THEY DON'T WANT TO TO GET 5957 04:57:20,059 --> 04:57:22,528 BACK THEIR DATA AND DOESN'T 5958 04:57:22,528 --> 04:57:23,629 SCIENTIFICALLY MAKE SENSE 5959 04:57:23,629 --> 04:57:28,467 BECAUSE NON-NATIVES COME TO THE 5960 04:57:28,467 --> 04:57:32,805 RESERVATION AND IT'S A LENS 5961 04:57:32,805 --> 04:57:37,910 NON-NATIVES PUT ON DATA IN TERMS 5962 04:57:37,910 --> 04:57:40,246 OF THEIR OWNERSHIP OR CONTROL OR 5963 04:57:40,246 --> 04:57:40,880 RIGHTS COMPARED TO WHAT TRIBES 5964 04:57:40,880 --> 04:57:42,982 DO. 5965 04:57:42,982 --> 04:57:47,687 AS CRYSTAL ALLUDED TO WITH ML 5966 04:57:47,687 --> 04:57:52,858 AND AI OTHER TYPES OF DATA LIKE 5967 04:57:52,858 --> 04:57:56,329 THE MICROBIOME, LIKE PUBLIC 5968 04:57:56,329 --> 04:57:58,898 HEALTH DATA AND ENVIRONMENTAL 5969 04:57:58,898 --> 04:58:01,334 DATA AND A.I. WILL BREAD CRUMB 5970 04:58:01,334 --> 04:58:05,838 TO A HUMAN RESOURCE. 5971 04:58:05,838 --> 04:58:08,407 IF YOU DON'T BELIEVE ME CRYSTAL, 5972 04:58:08,407 --> 04:58:10,142 MATT AND KAYLA WERE IN A PAPER 5973 04:58:10,142 --> 04:58:12,245 LAST WEEK TALKING ABOUT AND 5974 04:58:12,245 --> 04:58:13,346 CREATING AN INDIGENOUS ETHICS 5975 04:58:13,346 --> 04:58:18,784 FOR MICROBIOME BECAUSE THAT'S 5976 04:58:18,784 --> 04:58:21,921 HOW IMPORTANT MICROBIOME IS TO 5977 04:58:21,921 --> 04:58:26,792 INTERROGATING THE PRIVACY OF 5978 04:58:26,792 --> 04:58:27,193 INDIGENOUS PEOPLE. 5979 04:58:27,193 --> 04:58:32,465 AND THERE'S A THING WHERE IF 5980 04:58:32,465 --> 04:58:35,067 THEY CAN'T GET IT FROM HAWAI'I 5981 04:58:35,067 --> 04:58:38,204 OR NEW ZEALAND THEY'LL GO TO 5982 04:58:38,204 --> 04:58:40,873 SAMOA OR IF THEY CANT GET IT 5983 04:58:40,873 --> 04:58:42,008 FROM OTHER GROUPS THEY'LL GET IT 5984 04:58:42,008 --> 04:58:45,111 FROM MEXICANS. 5985 04:58:45,111 --> 04:58:50,249 THIS SHELL GAME TO TRY TO GET 5986 04:58:50,249 --> 04:58:50,549 THE DATA. 5987 04:58:50,549 --> 04:58:51,917 THERE'S ALL KINDS OF PEOPLE 5988 04:58:51,917 --> 04:58:52,585 TRYING TO GET THIS DATA ALL THE 5989 04:58:52,585 --> 04:59:02,161 TIME. 5990 04:59:02,161 --> 04:59:09,869 AND GOOD LOOK BECAUSE PEOPLE ARE 5991 04:59:09,869 --> 04:59:13,606 TRYING TO CIRCUMVENT AND KRYSTAL 5992 04:59:13,606 --> 04:59:16,475 AND I HAVE BEEN VICTIMS OF 5993 04:59:16,475 --> 04:59:19,478 PEOPLE SAYING WE GOT IT BEFORE. 5994 04:59:19,478 --> 04:59:25,351 WE HAVE LEGACY SAMPLES BEFORE 5995 04:59:25,351 --> 04:59:28,254 THEY WERE PROTECTED. 5996 04:59:28,254 --> 04:59:28,921 IT'S AN UNKNOWN LOCATION BUT WE 5997 04:59:28,921 --> 04:59:37,430 HAVE THEM. 5998 04:59:37,430 --> 04:59:40,232 THAT'S THE SATE OF PLAY WE'RE IN 5999 04:59:40,232 --> 04:59:40,533 TODAY. 6000 04:59:40,533 --> 04:59:41,801 >> ALL RIGHT. 6001 04:59:41,801 --> 04:59:45,204 THIS ON THEME TALKING ABOUT 6002 04:59:45,204 --> 04:59:46,172 DISSOLUTION OF THE SECTION AND I 6003 04:59:46,172 --> 04:59:47,506 WANT TO CONTINUE THE THEME. 6004 04:59:47,506 --> 04:59:50,176 WHEN WE TALK ABOUT WHAT HAPPENS 6005 04:59:50,176 --> 04:59:52,478 TO CORPORATE ENTITIES WHEN THEY 6006 04:59:52,478 --> 04:59:57,249 END AND THE INFORMED CONSENT 6007 04:59:57,249 --> 05:00:00,453 FORMS AND TREATMENTS PEOPLE WHO 6008 05:00:00,453 --> 05:00:04,623 CONTRIBUTED DATA AND DNA WHAT 6009 05:00:04,623 --> 05:00:06,158 HAPPENS? 6010 05:00:06,158 --> 05:00:16,669 THIRD PARTY PLATFORM PROMISED 6011 05:00:21,907 --> 05:00:27,947 THINGS AND IT WAS SOLD RECENTLY 6012 05:00:27,947 --> 05:00:29,215 IT WAS QUIET NEWS. 6013 05:00:29,215 --> 05:00:29,615 NOBODY ASKED. 6014 05:00:29,615 --> 05:00:31,617 RIGHT NOW WE HAVE A TOPIC OF THE 6015 05:00:31,617 --> 05:00:36,322 STRONG HEART STUDY IN WHICH HAS 6016 05:00:36,322 --> 05:00:38,524 BEEN A LONG TERM STUDY ON A 6017 05:00:38,524 --> 05:00:40,393 GRANT BASIS AND DUE TO CONCERNS 6018 05:00:40,393 --> 05:00:45,164 AND LIMITED ENGAGEMENT IS ON A 6019 05:00:45,164 --> 05:00:47,800 CONTRACT BASIS AND SOME HAVE 6020 05:00:47,800 --> 05:00:48,467 PREEMPTIVELY REMOVED THEMSELVES 6021 05:00:48,467 --> 05:00:49,201 FROM THE PROGRAM. 6022 05:00:49,201 --> 05:00:57,510 WHAT'S GOING TO HAPPEN IF THIS 6023 05:00:57,510 --> 05:00:58,210 PROJECT ENDS? 6024 05:00:58,210 --> 05:00:59,412 WHERE WILL THE DATA GO? 6025 05:00:59,412 --> 05:01:00,479 IT'S A CONCERN TRIBAL NATION 6026 05:01:00,479 --> 05:01:02,081 HAVE AND IF THEY DON'T HAVE, 6027 05:01:02,081 --> 05:01:04,750 SHOULD HAVE. 6028 05:01:04,750 --> 05:01:06,819 RECENTLY THERE'S BEEN A NUMBER 6029 05:01:06,819 --> 05:01:10,055 OF AWARDS TO CREATE BIO 6030 05:01:10,055 --> 05:01:10,723 REPOSITORIES FOR A.I. AND POINT 6031 05:01:10,723 --> 05:01:11,791 OF CARE ISLANDERS. 6032 05:01:11,791 --> 05:01:15,961 WHERE WILL THE SUPPORT BE IN THE 6033 05:01:15,961 --> 05:01:20,166 FUTURE IF AND WHEN THEY CUT 6034 05:01:20,166 --> 05:01:23,102 SUPPORT FOR THE ENTITIES THEY 6035 05:01:23,102 --> 05:01:23,369 CREATED? 6036 05:01:23,369 --> 05:01:24,837 IS IT GOING TO BE DISSOLVE? 6037 05:01:24,837 --> 05:01:27,072 WILL IT BE ABSORBED INTO 6038 05:01:27,072 --> 05:01:27,907 EXISTING OTHER PROGRAMS THAT 6039 05:01:27,907 --> 05:01:28,541 TRIBAL NATIONS DON'T HAVE TRUST 6040 05:01:28,541 --> 05:01:38,617 IN? 6041 05:01:39,952 --> 05:01:41,353 IF WE TALK ABOUT THE DATA CYCLE 6042 05:01:41,353 --> 05:01:43,055 MOST THE DATA SITS FOR LONG 6043 05:01:43,055 --> 05:01:43,656 PERIOD OF TIME IN THE STORAGE 6044 05:01:43,656 --> 05:01:46,192 AND REUSE PART. 6045 05:01:46,192 --> 05:01:49,862 WE NEED TO START THINKING ABOUT 6046 05:01:49,862 --> 05:01:51,630 THE LONG TERM AND SEVEN 6047 05:01:51,630 --> 05:01:52,431 GENERATIONS FORWARD. 6048 05:01:52,431 --> 05:01:53,065 >> THANK YOU. 6049 05:01:53,065 --> 05:01:54,800 I THINK WE WILL GO AHEAD AND 6050 05:01:54,800 --> 05:02:00,506 WRAP UP BUT I WANT TO THANK THE 6051 05:02:00,506 --> 05:02:03,676 PANEL FOR THE COMMENTS AND I 6052 05:02:03,676 --> 05:02:05,611 THINK WE'RE IN THE RIGHT ROOM 6053 05:02:05,611 --> 05:02:08,447 BECAUSE THESE ARE THE DIFFICULT 6054 05:02:08,447 --> 05:02:09,582 QUESTIONS DR. WALTERS' OFFICE IS 6055 05:02:09,582 --> 05:02:13,319 GOING TO HAVE TO TAKE ON. 6056 05:02:13,319 --> 05:02:14,687 KRYSTAL, I THINK YOU PERFECTLY 6057 05:02:14,687 --> 05:02:16,388 SUMMED UP THE NEXT PANEL WHICH 6058 05:02:16,388 --> 05:02:18,924 WILL CONSIDER SOME QUESTIONS 6059 05:02:18,924 --> 05:02:21,794 ABOUT WHAT HAPPENS TO SAMPLES IN 6060 05:02:21,794 --> 05:02:24,463 THE LONG-TERM TERM. 6061 05:02:24,463 --> 05:02:27,166 THANKS SO MUCH TO EVERYBODY. 6062 05:02:27,166 --> 05:02:29,068 >> WE'LL TAKE JUST THREE OR FOUR 6063 05:02:29,068 --> 05:02:30,703 MINUTES FOR FOLKS TO STRETCH 6064 05:02:30,703 --> 05:02:34,006 THEIR LEGS AND REFRESH THEIR 6065 05:02:34,006 --> 05:02:35,574 COFFEES PLAY MUSICAL CHAIRS 6066 05:02:35,574 --> 05:02:38,644 AGAIN AND GO INTO OUR LAST PANEL 6067 05:02:38,644 --> 05:02:39,311 BECAUSE WE'RE A LITTLE SHORT ON 6068 05:02:39,311 --> 05:02:44,450 TIME WE'RE GOING TO TRY TO 6069 05:02:44,450 --> 05:02:45,584 BREEZE THROUGH THE LAST PANEL 6070 05:02:45,584 --> 05:02:48,053 AND DO OUR ENDING REMARKS BUT 6071 05:02:48,053 --> 05:02:48,687 PLEASE EXCUSE YOURSELF IF YOU 6072 05:02:48,687 --> 05:02:58,831 NEED TO. 6073 05:08:38,203 --> 05:08:42,074 >> SO YOU GUYS KNOW BEFORE WE 6074 05:08:42,074 --> 05:08:47,713 SCATTERED THIS AFTERNOON, TWO 6075 05:08:47,713 --> 05:08:52,517 QUICK ANNOUNCEMENTS WE WANTED TO 6076 05:08:52,517 --> 05:08:58,156 MAKE THE DINNER OPTIONAL BECAUSE 6077 05:08:58,156 --> 05:09:00,459 WE KNOW PEOPLE HAVE DIFFERENT 6078 05:09:00,459 --> 05:09:02,628 LEVELS OF TRAVEL FATIGUE. 6079 05:09:02,628 --> 05:09:08,567 BETWEEN 6:30 AND 6:45 PEOPLE ARE 6080 05:09:08,567 --> 05:09:12,471 GOING TO MEET AT TRUE FOOD 6081 05:09:12,471 --> 05:09:19,745 WITHIN WALKING DISTANCE PEOPLE 6082 05:09:19,745 --> 05:09:20,946 WILL BE THERE. 6083 05:09:20,946 --> 05:09:22,748 THERE'S NO RESERVATIONS. 6084 05:09:22,748 --> 05:09:25,450 SOME WILL MEET AT THE HOTEL 6085 05:09:25,450 --> 05:09:27,152 LOBBY SOME MAY LEAVE -- IF YOU 6086 05:09:27,152 --> 05:09:29,121 WANT TO MEET AT 6:30 AT THE 6087 05:09:29,121 --> 05:09:30,422 LOBBY TO WALK OVER AT THE LATEST 6088 05:09:30,422 --> 05:09:32,457 IF YOU'RE INTERESTED IN GOING. 6089 05:09:32,457 --> 05:09:36,094 TRUE FOOD. 6090 05:09:36,094 --> 05:09:37,996 THE OTHER IS DON'T SCATTERED 6091 05:09:37,996 --> 05:09:40,999 AFTER WE'RE DONE BECAUSE WE WANT 6092 05:09:40,999 --> 05:09:44,002 A PICTURE WITH EVERYBODY ON THE 6093 05:09:44,002 --> 05:09:44,770 FRONT STEPS OF BUILDING 1. 6094 05:09:44,770 --> 05:09:45,037 THAT'S IT. 6095 05:09:45,037 --> 05:09:55,080 CARRY ON. 6096 05:09:55,080 --> 05:09:59,151 [OFF-MIC] 6097 05:09:59,151 --> 05:09:59,985 STRATEGIES AND INDIGENOUS 6098 05:09:59,985 --> 05:10:08,260 RESEARCH AND OUR PANELIST ARE 6099 05:10:08,260 --> 05:10:13,799 DR. BEANS, DR. HIRATSUKA AND 6100 05:10:13,799 --> 05:10:15,767 DR. SCHULTZ AND ANDERSON FOR OUR 6101 05:10:15,767 --> 05:10:21,340 FIRST QUESTION AND SOMEWHAT 6102 05:10:21,340 --> 05:10:23,108 SELFISH FOR US WE'VE BEEN 6103 05:10:23,108 --> 05:10:25,243 TALKING ABOUT THE POLICY. 6104 05:10:25,243 --> 05:10:26,545 ON THE NIH SIDE WE RECOGNIZE OUR 6105 05:10:26,545 --> 05:10:31,083 WORK AND DR. WALTERS MENTIONED 6106 05:10:31,083 --> 05:10:32,451 IT WILL BE TEACHING OUR NIH 6107 05:10:32,451 --> 05:10:37,389 COLLEAGUES AND HOW TO IMPLEMENT 6108 05:10:37,389 --> 05:10:44,429 THIS POLICY WHAT SHOULD NIH 6109 05:10:44,429 --> 05:10:48,033 PROGRAM OFFICERS UNDERSTAND 6110 05:10:48,033 --> 05:10:49,267 ABOUT DATA SHARING AND POLICY 6111 05:10:49,267 --> 05:10:51,570 SHOULD UNDERSTAND WHEN WORKING 6112 05:10:51,570 --> 05:10:52,471 WITH INDIGENOUS POPULATIONS AND 6113 05:10:52,471 --> 05:11:01,880 TRIBES? 6114 05:11:01,880 --> 05:11:04,449 IT'S OKAY TO SAY WHAT YOU NEED 6115 05:11:04,449 --> 05:11:08,153 TO SAY. 6116 05:11:08,153 --> 05:11:09,621 >> THAT'S A GOOD START. 6117 05:11:09,621 --> 05:11:20,165 WE HAVE BEEN CIRCLING AUTO THAT 6118 05:11:20,532 --> 05:11:22,267 WE'RE TALKING ABOUT A PROCESS OF 6119 05:11:22,267 --> 05:11:25,337 CONSENTING AND ESTABLISHING 6120 05:11:25,337 --> 05:11:27,906 RESEARCH QUESTIONS FROM OUR OWN 6121 05:11:27,906 --> 05:11:32,477 COMMUNITIES OR IN LONG STANDING 6122 05:11:32,477 --> 05:11:33,745 PARTNERSHIPS AND COMMITMENTS 6123 05:11:33,745 --> 05:11:34,246 THAT CONTINUES THROUGH 6124 05:11:34,246 --> 05:11:42,487 PUBLISHING. 6125 05:11:42,487 --> 05:11:44,022 IN GENERAL THE PRACTICE AND 6126 05:11:44,022 --> 05:11:49,261 BEING IN THE GOOD RELATIONSHIP 6127 05:11:49,261 --> 05:11:53,865 WE'RE TALKING ABOUT PUBLISHING 6128 05:11:53,865 --> 05:11:58,170 WOULD NOT BE THE END GOAL AND I 6129 05:11:58,170 --> 05:11:59,838 DON'T LIKE THE TERM 6130 05:11:59,838 --> 05:12:05,043 DISSEMINATION BUT AT THAT POINT 6131 05:12:05,043 --> 05:12:06,478 YOU'RE REALLY SHARING AND GIVING 6132 05:12:06,478 --> 05:12:06,678 BACK. 6133 05:12:06,678 --> 05:12:08,513 WHAT YOU'RE SETTING UP ARE THE 6134 05:12:08,513 --> 05:12:12,651 STRATEGIES AND WAYS YOU'LL BE 6135 05:12:12,651 --> 05:12:12,951 DOING THAT. 6136 05:12:12,951 --> 05:12:18,757 THAT'S WHAT I'D SHARE FOR OVER. 6137 05:12:18,757 --> 05:12:19,357 I'LL GO FROM THERE. 6138 05:12:19,357 --> 05:12:28,233 THANK YOU. 6139 05:12:28,233 --> 05:12:31,336 >> A COUPLE THINGS. 6140 05:12:31,336 --> 05:12:36,274 THIS IS WRONG. 6141 05:12:36,274 --> 05:12:37,442 THIS IS UNCOMFORTABLE. 6142 05:12:37,442 --> 05:12:44,316 >> WE'RE AT THAT POINT. 6143 05:12:44,316 --> 05:12:47,119 WHEN YOU TALK ABOUT HOW LONG THE 6144 05:12:47,119 --> 05:12:50,055 PROJECTS TAKE AND THE ITERATIVE 6145 05:12:50,055 --> 05:12:52,090 POINT THE EXPECTATION OF 6146 05:12:52,090 --> 05:12:54,459 CONTINUANCE OF PROJECT AND GOING 6147 05:12:54,459 --> 05:12:56,461 BACK TO P.O.s AND STUDY SECTION 6148 05:12:56,461 --> 05:12:57,662 TO GET RENEWAL. 6149 05:12:57,662 --> 05:12:59,931 IF WE LOOK AT THE WAY RENEWALS 6150 05:12:59,931 --> 05:13:03,335 ARE JUDGED BEING ON A PERMANENT 6151 05:13:03,335 --> 05:13:07,239 STUDY SECTION IT'S ALL BASED ON 6152 05:13:07,239 --> 05:13:10,675 PRODUCTIVITY. 6153 05:13:10,675 --> 05:13:12,944 BASED ON PAPERS AND POSTERS. 6154 05:13:12,944 --> 05:13:16,181 IF THERE'S QUOTE, UNQUOTE 6155 05:13:16,181 --> 05:13:21,386 TANGIBLE OUTCOMES OF THE 6156 05:13:21,386 --> 05:13:24,923 PROJECTS ARE NOT GOING TO BE AND 6157 05:13:24,923 --> 05:13:25,624 CLEAR TO EVERYBODY ON THE STUDY 6158 05:13:25,624 --> 05:13:35,767 SECTION. 6159 05:13:39,871 --> 05:13:41,640 AND THERE'S JUDGMENT. 6160 05:13:41,640 --> 05:13:43,675 THERE NEEDS TO BE TRAINING FOR 6161 05:13:43,675 --> 05:13:45,443 ANYBODY SITTING ON THE STUDY 6162 05:13:45,443 --> 05:13:46,778 SECTION SO THEY UNDERSTAND WHAT 6163 05:13:46,778 --> 05:13:47,879 THE PROCESSES LOOK LIKE TO JUDGE 6164 05:13:47,879 --> 05:13:51,116 THEM IN A WAY THAT'S FAIR 6165 05:13:51,116 --> 05:13:55,754 OTHERWISE ANY WORK DOING IT IN A 6166 05:13:55,754 --> 05:13:57,856 WAY THAT IS USING BETTER AND 6167 05:13:57,856 --> 05:14:00,458 LESS EXPLOITIVE PROCESSES IS 6168 05:14:00,458 --> 05:14:04,062 GOING TO BE AT AN INHERENT 6169 05:14:04,062 --> 05:14:04,729 DISADVANTAGE WHICH MEANS THE 6170 05:14:04,729 --> 05:14:12,304 WORK WILL GET CULLED. 6171 05:14:12,304 --> 05:14:18,109 >> I WANTED TO ADD THAT THERE 6172 05:14:18,109 --> 05:14:23,181 NEEDS TO BE A LOT OF FLEXIBILITY 6173 05:14:23,181 --> 05:14:29,421 TO ALLOW FLEXIBILITY FOR TRIBES 6174 05:14:29,421 --> 05:14:30,488 TO DECIDE HOW THINGS CHANGE OVER 6175 05:14:30,488 --> 05:14:31,957 TIME AND FIND OUT AS MORE 6176 05:14:31,957 --> 05:14:37,128 INFORMATION IS REVEALED OVER 6177 05:14:37,128 --> 05:14:39,898 TIME WE SHOULDN'T BE GIVING 6178 05:14:39,898 --> 05:14:41,466 POINTS AGAINST A TRIBAL NATION 6179 05:14:41,466 --> 05:14:47,138 FOR CHANGING THEIR MIND 6180 05:14:47,138 --> 05:14:53,111 ESPECIALLY WHEN TRIBAL LEADERS 6181 05:14:53,111 --> 05:14:53,345 CHANGE. 6182 05:14:53,345 --> 05:14:56,548 YOU NEED TO ALLOW FOR THE 6183 05:14:56,548 --> 05:15:01,786 FLEXIBILITY TO HAPPEN. 6184 05:15:01,786 --> 05:15:11,997 >> RELATED LY THAT POINTS TO DAA 6185 05:15:11,997 --> 05:15:14,766 SOVEREIGNTY AND WHAT I HEARD IS 6186 05:15:14,766 --> 05:15:17,969 FUNCTIONING IN THESE TRIBES AND 6187 05:15:17,969 --> 05:15:19,337 THE FEDS AND THERE'S A THIRD 6188 05:15:19,337 --> 05:15:21,906 SPACE A LOT OF US LIVE IN WHICH 6189 05:15:21,906 --> 05:15:26,344 ARE ACADEMIC INSTITUTIONS OR 6190 05:15:26,344 --> 05:15:30,615 RESEARCH INSTITUTIONS. 6191 05:15:30,615 --> 05:15:33,018 ISSUES AROUND DISSEMINATION AND 6192 05:15:33,018 --> 05:15:33,952 IT TALKS ABOUT DATA OWNERSHIP 6193 05:15:33,952 --> 05:15:40,458 AND HOW WE USE IT AND TO YOUR 6194 05:15:40,458 --> 05:15:44,296 POINT REALLY EMPHASIZES 6195 05:15:44,296 --> 05:15:44,629 PUBLICATIONS. 6196 05:15:44,629 --> 05:15:48,466 YOU'RE TALKING TO AN UNTENURED 6197 05:15:48,466 --> 05:15:50,568 FACULTY MEMBER WHOSE PACKET IS 6198 05:15:50,568 --> 05:15:53,838 IN AND FOR THOSE WHO KNOW THAT, 6199 05:15:53,838 --> 05:15:57,275 PUBLICATIONS ARE CURRENCY AND 6200 05:15:57,275 --> 05:15:59,411 HOW DO WE NAVIGATE THAT AND 6201 05:15:59,411 --> 05:16:00,478 THERE ARE THINGS ABOUT BEING 6202 05:16:00,478 --> 05:16:01,579 TRANSPARENT WITH TRIBAL PARTNERS 6203 05:16:01,579 --> 05:16:02,881 ABOUT WHAT HAPPENS AT THE END. 6204 05:16:02,881 --> 05:16:09,220 WHAT I NEED TO DO TO KEEP MY JOB 6205 05:16:09,220 --> 05:16:10,922 KIND OF THING. 6206 05:16:10,922 --> 05:16:13,358 AS SOMEONE WHO IS THERE WITH 6207 05:16:13,358 --> 05:16:18,129 PROJECTS THINKING ABOUT CAPACITY 6208 05:16:18,129 --> 05:16:22,067 BUILDING EVEN WITH TRIBAL AND 6209 05:16:22,067 --> 05:16:23,034 COMMUNITY PARTNERS AND FOR A 6210 05:16:23,034 --> 05:16:28,473 LONG TIME WE TALKED ABOUT 6211 05:16:28,473 --> 05:16:32,010 COMMUNITY ENGAGEMENT AND HAVE 6212 05:16:32,010 --> 05:16:32,877 MOVED TOWARDS RECOGNIZING THE 6213 05:16:32,877 --> 05:16:36,448 FIRST PART TO BOBBY'S POINT 6214 05:16:36,448 --> 05:16:38,249 FUNDING TIME TO DEVELOP 6215 05:16:38,249 --> 05:16:39,384 RELATIONSHIPS OR TO GIVE SPACE 6216 05:16:39,384 --> 05:16:48,293 TO PRIORITIZING HOW THINGS WILL 6217 05:16:48,293 --> 05:16:49,794 I HAVEN'T SEEN US HAVE THE 6218 05:16:49,794 --> 05:16:51,696 CONVERSATION AROUND THE LATER 6219 05:16:51,696 --> 05:16:53,298 PART AND FUNCTIONALLY CREATE 6220 05:16:53,298 --> 05:16:54,999 SPACES TO ALLOW FOR TIME TO WORK 6221 05:16:54,999 --> 05:16:57,402 WITH PARTNERS ABOUT WHAT TO DO 6222 05:16:57,402 --> 05:16:57,802 WITH DATA. 6223 05:16:57,802 --> 05:17:03,108 AS SOMEONE TRYING TO FIGURE THAT 6224 05:17:03,108 --> 05:17:13,618 OUT AND PROJECTS ARE OVER AND 6225 05:17:14,619 --> 05:17:16,354 THINKING ABOUT PUBLISHING YOU 6226 05:17:16,354 --> 05:17:18,623 FEEL LIKE THE ETHICAL PACE THAT 6227 05:17:18,623 --> 05:17:19,290 DOESN'T ALWAYS GET ADDRESSED IS 6228 05:17:19,290 --> 05:17:23,728 ASKING PARTNERS TO DO THE WORK 6229 05:17:23,728 --> 05:17:25,263 TOO THAT IT DOESN'T HAVE AN 6230 05:17:25,263 --> 05:17:26,131 IMMEDIATE BENEFIT FOR THEM AND 6231 05:17:26,131 --> 05:17:29,200 HOW DO WE THINK OF BRINGING 6232 05:17:29,200 --> 05:17:32,103 PARTNERS ON AS AUTHORS OR 6233 05:17:32,103 --> 05:17:33,238 DEVELOPING USABLE PRODUCTS 6234 05:17:33,238 --> 05:17:35,340 OUTSIDE OF ACADEMIC PUBLISHING. 6235 05:17:35,340 --> 05:17:38,943 IT TAKES TIME AND WORK AND 6236 05:17:38,943 --> 05:17:41,312 CAPACITY BUILDING EVEN WITHIN 6237 05:17:41,312 --> 05:17:41,613 COMMUNITIES. 6238 05:17:41,613 --> 05:17:45,750 FOR THOSE WHO DO THIS KIND OF 6239 05:17:45,750 --> 05:17:49,354 WORK YOU HAVE TO TALK TO THAT 6240 05:17:49,354 --> 05:17:50,889 ONE PERSON IN COMMUNITY AND THAT 6241 05:17:50,889 --> 05:17:55,693 ONE PERSON IS ASKED 20 MILLION 6242 05:17:55,693 --> 05:17:56,628 THINGS AND ASKING SOMEONE TO 6243 05:17:56,628 --> 05:17:59,697 COME ON AND HELP FIGURE OUT HOW 6244 05:17:59,697 --> 05:18:02,867 TO USE THE FINDINGS OR GET THEM 6245 05:18:02,867 --> 05:18:03,835 OUT IS SOMETHING I STRUGGLE WITH 6246 05:18:03,835 --> 05:18:05,303 IN TERMS OF THAT. 6247 05:18:05,303 --> 05:18:07,372 I WOULD HOPE WE CAN THINK A 6248 05:18:07,372 --> 05:18:09,774 LITTLE BIT AND IF THE QUESTION 6249 05:18:09,774 --> 05:18:12,010 IS TO NIH IT'S NOT IMMEDIATELY 6250 05:18:12,010 --> 05:18:17,115 CLEAR TO ME IF THIS IS A TRIBAL 6251 05:18:17,115 --> 05:18:19,184 CAPACITY PROBLEM, IF THIS IS AN 6252 05:18:19,184 --> 05:18:20,452 NIH CAPACITY PROBLEM OR A 6253 05:18:20,452 --> 05:18:26,691 RESEARCHER CAPACITY PROBLEM. 6254 05:18:26,691 --> 05:18:29,160 WHAT IS NIH'S RESPONSIBILITY TO 6255 05:18:29,160 --> 05:18:30,895 TRIBES TO BUILD CAPACITY IN 6256 05:18:30,895 --> 05:18:32,197 DOING THIS WORK ARE SOME OF THE 6257 05:18:32,197 --> 05:18:39,304 THINGS I'VE BEEN THINKING ABOUT. 6258 05:18:39,304 --> 05:18:44,909 >> I'VE BEEN SPENDING THE DAY 6259 05:18:44,909 --> 05:18:49,647 THINKING THROUGH VARIOUS 6260 05:18:49,647 --> 05:18:52,217 RESPONSES AND SAW THE QUESTIONS 6261 05:18:52,217 --> 05:18:56,221 PUT BEFORE US AND THOUGHT 6262 05:18:56,221 --> 05:18:58,389 CLEARLY LEASE A ONE BOOK IF NOT 6263 05:18:58,389 --> 05:19:01,292 ANTHOLOGY OF THE DIFFERENT 6264 05:19:01,292 --> 05:19:06,498 QUESTIONS EACH PANEL HAS BEFORE 6265 05:19:06,498 --> 05:19:10,568 US. 6266 05:19:10,568 --> 05:19:15,807 A COUPLE THOUGHTS. 6267 05:19:15,807 --> 05:19:17,809 ONE IS WHAT SHOULD A PROJECT 6268 05:19:17,809 --> 05:19:20,345 OFFICER KNOW MADE ME ASK THE 6269 05:19:20,345 --> 05:19:22,947 QUESTION OF WHAT TO PROJECT 6270 05:19:22,947 --> 05:19:24,482 OFFICERS KNOW CURRENTLY? 6271 05:19:24,482 --> 05:19:25,884 WHO ARE THE PROJECT OFFICERS? 6272 05:19:25,884 --> 05:19:31,356 WHAT ARE THEIR ROLES AND 6273 05:19:31,356 --> 05:19:34,225 RESPONSIBILITIES CURRENTLY? 6274 05:19:34,225 --> 05:19:36,461 I'VE BEEN TO RECEIVING AWARD 6275 05:19:36,461 --> 05:19:41,032 TYPES AS A P.I. 6276 05:19:41,032 --> 05:19:42,767 AND EACH PROJECT OFFICER HAS 6277 05:19:42,767 --> 05:19:44,536 ENGAGED WITH ME IN DIFFERENT 6278 05:19:44,536 --> 05:19:44,769 MANNERS. 6279 05:19:44,769 --> 05:19:47,505 SOME HAVE NOT ENGAGED AT ALL 6280 05:19:47,505 --> 05:19:48,907 THROUGHOUT THE FIVE YEARS OF THE 6281 05:19:48,907 --> 05:19:50,608 FUNDING OR EIGHT YEARS OF THE 6282 05:19:50,608 --> 05:19:50,842 FUNDING. 6283 05:19:50,842 --> 05:19:56,447 SOMETIMES THE ENGAGEMENT HAS 6284 05:19:56,447 --> 05:19:58,716 BEEN CASUAL. 6285 05:19:58,716 --> 05:20:05,990 WE CHECK IN WITH ONE OTHER AS 6286 05:20:05,990 --> 05:20:07,492 PEOPLE BUT NOT ON THE SCIENCE. 6287 05:20:07,492 --> 05:20:10,161 WE DON'T TALK ABOUT MY RPPRs 6288 05:20:10,161 --> 05:20:10,828 I'VE SUBMITTED. 6289 05:20:10,828 --> 05:20:12,797 WE DON'T NECESSARILY SPEAK ON 6290 05:20:12,797 --> 05:20:14,032 WHERE ARE WE AT IN THE PROJECT 6291 05:20:14,032 --> 05:20:15,366 AND WHAT DO THE FINDINGS MEAN TO 6292 05:20:15,366 --> 05:20:21,005 OUR COMMUNITIES? 6293 05:20:21,005 --> 05:20:22,674 THEY HAVEN'T BEEN THOSE TYPES OF 6294 05:20:22,674 --> 05:20:25,376 CONVERSATIONS SO WHEN I SAW WHAT 6295 05:20:25,376 --> 05:20:26,644 SHOULD PROJECT OFFICERS KNOW I 6296 05:20:26,644 --> 05:20:28,479 THOUGHT, DAMN, I SHOULD KNOW 6297 05:20:28,479 --> 05:20:30,014 WHAT PROJECT OFFICERS DO AS WELL 6298 05:20:30,014 --> 05:20:35,420 BECAUSE I FEEL UNINFORMED AS A 6299 05:20:35,420 --> 05:20:37,655 CENTER INVESTIGATOR, AN RO1 6300 05:20:37,655 --> 05:20:39,624 INVESTIGATOR AS TO WHAT I SHOULD 6301 05:20:39,624 --> 05:20:43,361 BE EXPECTING OF THE INDIVIDUAL 6302 05:20:43,361 --> 05:20:44,429 THAT'S IN THAT POSITION. 6303 05:20:44,429 --> 05:20:46,998 AND THAT'S ON ME FOR NOT KNOWING 6304 05:20:46,998 --> 05:20:47,365 THAT. 6305 05:20:47,365 --> 05:20:50,802 I HAVE ATTEMPTED TO ENGAGE AND 6306 05:20:50,802 --> 05:20:52,704 IT'S BEEN ONCE SIDE OF 6307 05:20:52,704 --> 05:20:56,140 COMMUNICATION IN SOME RESPECTS 6308 05:20:56,140 --> 05:20:57,542 AND IT'S BEEN DANDY BUT I DID 6309 05:20:57,542 --> 05:20:58,843 THINK AS I SAW THE QUESTION AT 6310 05:20:58,843 --> 05:21:01,245 LEAST THE FIRST PORTION OF THAT 6311 05:21:01,245 --> 05:21:04,449 QUESTION IT MADE ME GO, HMM, 6312 05:21:04,449 --> 05:21:05,583 THERE'S AGAIN HIGH VARIABILITY 6313 05:21:05,583 --> 05:21:07,719 AS FOR ANY OF US AT ANY JOB 6314 05:21:07,719 --> 05:21:08,186 TYPE. 6315 05:21:08,186 --> 05:21:11,990 SO, ARE THERE MINIMUMS IN RULES 6316 05:21:11,990 --> 05:21:19,330 AND RESPONSIBILITIES AT ALL FOR 6317 05:21:19,330 --> 05:21:22,266 ALL OF THE TYPES OF WORK BY THE 6318 05:21:22,266 --> 05:21:23,768 PROJECT OFFICERS AND IF THAT'S 6319 05:21:23,768 --> 05:21:26,437 NOT MET HOW DO WE TACK ON THE 6320 05:21:26,437 --> 05:21:27,505 ADDITIONAL COMPONENT FOR 6321 05:21:27,505 --> 05:21:32,844 POPULATIONS THAT WE'RE SPEAKING 6322 05:21:32,844 --> 05:21:33,378 TO? 6323 05:21:33,378 --> 05:21:36,648 TO ME I WOULD WANT TO SEE BOTH 6324 05:21:36,648 --> 05:21:37,215 DONE. 6325 05:21:37,215 --> 05:21:40,418 IF THE MINIMUM OF COMMUNICATION 6326 05:21:40,418 --> 05:21:41,486 CURRENTLY IS OCCURRING BROADLY 6327 05:21:41,486 --> 05:21:44,455 THEN I JUST DON'T SEE IT 6328 05:21:44,455 --> 05:21:50,895 HAPPENING DISCREETLY. 6329 05:21:50,895 --> 05:21:51,095 OKAY. 6330 05:21:51,095 --> 05:21:54,332 THAT'S THE FIRST THING I WANTED 6331 05:21:54,332 --> 05:21:56,167 TO GET OFF MY CHEST. 6332 05:21:56,167 --> 05:21:57,902 THE SECOND THING I WHAT I SPEAK 6333 05:21:57,902 --> 05:21:59,470 ABOUT MY TEAMS FREQUENTLY IS 6334 05:21:59,470 --> 05:22:00,471 THINKING ABOUT THE LIFE CYCLE OF 6335 05:22:00,471 --> 05:22:01,339 A PROJECT AND BEING PREPARED TO 6336 05:22:01,339 --> 05:22:08,646 RESPOND. 6337 05:22:08,646 --> 05:22:10,348 PEOPLE THAT WORK WITH ME WILL 6338 05:22:10,348 --> 05:22:12,684 PROBABLY BE IRRITATED WITH THE 6339 05:22:12,684 --> 05:22:13,351 TERM TO RESPOND. 6340 05:22:13,351 --> 05:22:15,887 IT'S KEY IN THE TITLE OF THIS 6341 05:22:15,887 --> 05:22:19,290 PANEL MANAGING THE END OF 6342 05:22:19,290 --> 05:22:23,394 PROJECT DATA. 6343 05:22:23,394 --> 05:22:24,762 HOW SAD. 6344 05:22:24,762 --> 05:22:27,565 YOU BETTER HAVE A PLAN TO MANAGE 6345 05:22:27,565 --> 05:22:29,801 THE END OF IS JUST AS FOR 6346 05:22:29,801 --> 05:22:30,401 ENGAGEMENT AND CONVERSATION. 6347 05:22:30,401 --> 05:22:34,138 IF YOU'RE IN A PLACE WHERE 6348 05:22:34,138 --> 05:22:36,474 YOU'RE BLESSED TO TALK TO 6349 05:22:36,474 --> 05:22:38,142 SOMEBODY INDIVIDUALLY ABOUT NFK 6350 05:22:38,142 --> 05:22:40,645 YOU MUST HAVE TOLD THEM ON AN 6351 05:22:40,645 --> 05:22:42,780 INDIVIDUAL LEVEL WHAT YOUR PLAN 6352 05:22:42,780 --> 05:22:43,915 WAS FOR THAT INFORMATION WHILE 6353 05:22:43,915 --> 05:22:48,453 YOU WERE COLLECTING IT AND WHAT 6354 05:22:48,453 --> 05:22:55,226 DOING NEXT. 6355 05:22:55,226 --> 05:22:59,797 IF YOU DIDN'T THAT'S PROBLE 6356 05:22:59,797 --> 05:23:00,098 PROBLEMATIC. 6357 05:23:00,098 --> 05:23:02,567 I ALWAYS TALKS TO MY TEAMS IN 6358 05:23:02,567 --> 05:23:03,601 THINKING WHERE SHOULD THIS PAPER 6359 05:23:03,601 --> 05:23:14,145 GO AND WHERE SHOULD THE TOPIC BE 6360 05:23:15,747 --> 05:23:24,489 LOOK BACK AT YOUR PROPOSAL AND 6361 05:23:24,489 --> 05:23:28,126 EVERYBODY HAS A VOICE OF HOW 6362 05:23:28,126 --> 05:23:29,293 YOU'RE DOING THIS AND HOW DO YOU 6363 05:23:29,293 --> 05:23:32,430 HAVE PROMISES FOR AND THE WE, I 6364 05:23:32,430 --> 05:23:34,499 TALK ABOUT LOCKING DOWN 6365 05:23:34,499 --> 05:23:34,899 PRONOUNS. 6366 05:23:34,899 --> 05:23:36,434 WHO IS THE WE IN THE STATEMENT 6367 05:23:36,434 --> 05:23:38,202 AND IN THE CONVERSATIONS TODAY 6368 05:23:38,202 --> 05:23:39,470 WE'VE HAD MANY ECOLOGICAL LEVELS 6369 05:23:39,470 --> 05:23:49,881 WE'VE BEEN SPEAKING TO. 6370 05:23:51,549 --> 05:23:53,551 THERE'S A TEAM MEMBER OR 6371 05:23:53,551 --> 05:23:54,685 PARTICIPANT OR DOING INFORMED 6372 05:23:54,685 --> 05:23:57,155 CONSENT VIA A SURVEY. 6373 05:23:57,155 --> 05:24:04,095 SOMETIMES YOU HAVE THE BLESSING 6374 05:24:04,095 --> 05:24:05,363 AND SOMETIMES YOU HAVE A TEAM 6375 05:24:05,363 --> 05:24:06,364 SCIENCE THAT'S HAPPENING. 6376 05:24:06,364 --> 05:24:09,100 THEY'RE ALL INVESTIGATORS. 6377 05:24:09,100 --> 05:24:10,434 THERE'S DIFFERENT LEVELS BETWEEN 6378 05:24:10,434 --> 05:24:12,637 AGENCIES OR NATION TO NATION. 6379 05:24:12,637 --> 05:24:15,006 WE'VE BEEN USING ALL THESE 6380 05:24:15,006 --> 05:24:16,474 DIFFERENT WES TODAY AND OTHER 6381 05:24:16,474 --> 05:24:19,911 DAYS. 6382 05:24:19,911 --> 05:24:21,512 I FEEL LIKE SOMETIMES WE'RE 6383 05:24:21,512 --> 05:24:22,947 PASSING EACH OTHER IN THESE 6384 05:24:22,947 --> 05:24:23,614 CONVERSATIONS BECAUSE WE HAVEN'T 6385 05:24:23,614 --> 05:24:25,349 LOCKED DOWN THE PRONOUN OF WHAT 6386 05:24:25,349 --> 05:24:28,452 WE MEAN BY THE WES. 6387 05:24:28,452 --> 05:24:31,989 AS I'VE BEEN MAKING CHRISTMAS 6388 05:24:31,989 --> 05:24:33,491 ORNAMENTS I WANT TO ASK THE 6389 05:24:33,491 --> 05:24:34,358 FOLLOW-UP QUESTION AS AN 6390 05:24:34,358 --> 05:24:38,563 INDIVIDUAL SPEAKER ON THE PANELS 6391 05:24:38,563 --> 05:24:40,464 OR SOMEBODY IN OUR ROOM ASKED A 6392 05:24:40,464 --> 05:24:44,268 QUESTION OR MADE A STATEMENT, 6393 05:24:44,268 --> 05:24:46,204 WHAT LEVEL ARE YOU SPEAKING TO 6394 05:24:46,204 --> 05:24:48,005 OR MULTIPLE LEVELS ARE YOU BEING 6395 05:24:48,005 --> 05:24:48,539 SPOKEN AT? 6396 05:24:48,539 --> 05:24:50,141 WHICH PORTION OR ALL THE 6397 05:24:50,141 --> 05:24:51,442 PORTIONS WITHIN THE LIFE CYCLE 6398 05:24:51,442 --> 05:24:52,977 OF THE RESEARCH PROJECT ARE WE 6399 05:24:52,977 --> 05:24:55,346 SPEAKING? 6400 05:24:55,346 --> 05:24:57,548 ARE WE TALKING ABOUT SECONDARY 6401 05:24:57,548 --> 05:25:00,518 DATA OR WHAT'S CONSIDERED HUMAN 6402 05:25:00,518 --> 05:25:06,324 SUBJECTS ACCORDING TO NATIONAL 6403 05:25:06,324 --> 05:25:09,193 LAW VERSUS WHAT A REASONABLE 6404 05:25:09,193 --> 05:25:10,361 PERSON WOULD CONSIDER HUMAN 6405 05:25:10,361 --> 05:25:12,463 SUBJECTS MEANING INFORMATION 6406 05:25:12,463 --> 05:25:17,335 THAT CAME FROM A HUMAN BEING. 6407 05:25:17,335 --> 05:25:22,807 AND FOR MYSELF I DON'T CONSIDER 6408 05:25:22,807 --> 05:25:26,377 HUMAN BEINGS TO BE ALL, END ALL 6409 05:25:26,377 --> 05:25:28,312 AND INFORMATION FROM A MICRO 6410 05:25:28,312 --> 05:25:30,581 ORGANISM WITHIN MY GUT HAS VALUE 6411 05:25:30,581 --> 05:25:31,816 AND SHOULD BE CONSIDERED TOO NOT 6412 05:25:31,816 --> 05:25:33,985 JUST IF IT CAME FROM A HUMAN 6413 05:25:33,985 --> 05:25:38,489 BEING. 6414 05:25:38,489 --> 05:25:46,464 AGAIN, ALL THESE THINGS AND 6415 05:25:46,464 --> 05:25:51,769 CLEAR IN OUR NUMBERS AND DATA 6416 05:25:51,769 --> 05:25:52,937 AND WORDS AND I'VE BEEN LEFT 6417 05:25:52,937 --> 05:25:55,306 BEHIND I SUPPOSED BECAUSE I'M 6418 05:25:55,306 --> 05:25:59,343 NOT SURE WHAT PARTICULARS WE'RE 6419 05:25:59,343 --> 05:26:00,311 SPEAKING TO AND WHEN WE TALK 6420 05:26:00,311 --> 05:26:04,448 ABOUT THIS DATA POLICIES WE'RE 6421 05:26:04,448 --> 05:26:06,884 SPEAKING OF ALL DATA TO ALL 6422 05:26:06,884 --> 05:26:07,184 TYPES. 6423 05:26:07,184 --> 05:26:09,921 WHEN WE SPEAK OF INDIGENOUS WITH 6424 05:26:09,921 --> 05:26:11,489 NOT JUST FEDERALLY RECOGNIZED 6425 05:26:11,489 --> 05:26:14,392 PEOPLE MOST BROADLY BUT WITHOUT 6426 05:26:14,392 --> 05:26:15,326 A DEFINITION OF TERMS I'M A 6427 05:26:15,326 --> 05:26:16,460 LITTLE LOST AS TO HOW TO 6428 05:26:16,460 --> 05:26:26,604 RESPOND. 6429 05:26:27,138 --> 05:26:37,548 >> I'M JULIE BEANS MPH NOT 6430 05:26:42,520 --> 05:26:44,455 Ph.D. AND HAVE BEEN LISTENING TO 6431 05:26:44,455 --> 05:26:48,059 THE CONVERSATIONS AN HEARING THE 6432 05:26:48,059 --> 05:26:50,428 QUESTION WHAT SHOULD P.O.s KNOW 6433 05:26:50,428 --> 05:26:55,967 IN THE CONTEXT OF THIS WORK. 6434 05:26:55,967 --> 05:26:57,935 SOMETHING THAT'S DIFFICULT AND 6435 05:26:57,935 --> 05:27:00,705 CHALLENGING FOR ME TO GRASP IS 6436 05:27:00,705 --> 05:27:05,743 THE CONVERSATION SEEMS TO BE 6437 05:27:05,743 --> 05:27:15,753 AROUND TRIBES AND FEDS AND HOW'S 6438 05:27:15,753 --> 05:27:17,555 IT TRANSLATE AND IT'S IMPORTANT 6439 05:27:17,555 --> 05:27:20,691 FOR P.O.s AND IN MY EXPERIENCE A 6440 05:27:20,691 --> 05:27:25,296 LOT OF THEM DO AND ARE OPEN TO 6441 05:27:25,296 --> 05:27:30,568 HEARING MORE ABOUT IT OF WHAT 6442 05:27:30,568 --> 05:27:41,078 OUR EXPERIENCES HAVE BEEN AND 6443 05:27:43,180 --> 05:27:46,384 IT'S BEEN CHALLENGING TO 6444 05:27:46,384 --> 05:27:47,785 UNDERSTAND WHEN YOU SAY 6445 05:27:47,785 --> 05:27:51,088 COMMUNITY, WHO IS THE COMMUNITY? 6446 05:27:51,088 --> 05:27:54,492 A TRIBAL COMMUNITY WITHIN A 6447 05:27:54,492 --> 05:27:56,460 PARTICULAR BOUNDS IS VERY 6448 05:27:56,460 --> 05:27:57,728 DIFFERENT THAN A COMMUNITY 6449 05:27:57,728 --> 05:28:00,765 WITHIN AN URBAN CONTEXT THAT'S 6450 05:28:00,765 --> 05:28:06,070 FROM MANY BACKGROUNDS. 6451 05:28:06,070 --> 05:28:11,509 THAT CAN BE MAYBE A LITTLE MORE 6452 05:28:11,509 --> 05:28:11,776 FLUIDS. 6453 05:28:11,776 --> 05:28:16,947 THAT'S IMPORTANT TO BE AWARE OF. 6454 05:28:16,947 --> 05:28:27,291 TO REMIND OURSELVES. 6455 05:28:33,030 --> 05:28:34,732 >> I APPRECIATE THE COMMENT ON 6456 05:28:34,732 --> 05:28:37,334 TRYING TO BE SPECIFIC AND I'LL 6457 05:28:37,334 --> 05:28:38,702 TRY TO DO THAT ESPECIALLY WITH 6458 05:28:38,702 --> 05:28:39,804 THE NEXT POINT. 6459 05:28:39,804 --> 05:28:41,205 ONE THING THAT'S IMPORTANT THAT 6460 05:28:41,205 --> 05:28:46,077 WAS DISCUSSED IN THE LAST 6461 05:28:46,077 --> 05:28:53,250 SESSION BUT WORTH REALLY GEARED 6462 05:28:53,250 --> 05:29:02,760 TOWARD IS AND LOOK AT PROPOSAS 6463 05:29:02,760 --> 05:29:04,462 THERE'S A MANAGEMENT PLAN THAT 6464 05:29:04,462 --> 05:29:08,199 INDICATES A PUBLIC AVAILABLE 6465 05:29:08,199 --> 05:29:10,601 ACCESS AND THIS IS SOMETHING WE 6466 05:29:10,601 --> 05:29:12,470 OFTEN DON'T GET TOLD AND IS 6467 05:29:12,470 --> 05:29:15,039 EXPLICITLY LEFT OUT. 6468 05:29:15,039 --> 05:29:18,275 I WOULD ARGUE EVERY INVESTIGATOR 6469 05:29:18,275 --> 05:29:19,543 WORKING WITH EVERY COMMUNITY 6470 05:29:19,543 --> 05:29:22,980 WITH IDEAS AROUND DATA 6471 05:29:22,980 --> 05:29:28,319 SOVEREIGNTY CAN BE DEMONSTRATED 6472 05:29:28,319 --> 05:29:29,420 CLEARLY. 6473 05:29:29,420 --> 05:29:31,355 IT CAN BE URBAN COMMUNITIES AS 6474 05:29:31,355 --> 05:29:33,524 WELL. 6475 05:29:33,524 --> 05:29:35,459 YOU CAN HAVE THE REQUIREMENT 6476 05:29:35,459 --> 05:29:38,796 DOCUMENT AND IT WILL GO THROUGH 6477 05:29:38,796 --> 05:29:41,699 P.O.s DECISION BECAUSE IT'S A 6478 05:29:41,699 --> 05:29:42,766 NOT-DISCUSSED ITEM. 6479 05:29:42,766 --> 05:29:43,501 P.O.s NEED TO UNDERSTAND THAT UP 6480 05:29:43,501 --> 05:29:53,611 FRONT. 6481 05:29:57,681 --> 05:30:00,551 IT'S IMPORTANT TO KNOW THE ROLE 6482 05:30:00,551 --> 05:30:01,352 OF THE NATIONAL INSTITUTES OF 6483 05:30:01,352 --> 05:30:04,321 HEALTH IN THE BEGIN. 6484 05:30:04,321 --> 05:30:06,524 AS RESEARCHERS I STOPPED MYSELF 6485 05:30:06,524 --> 05:30:07,424 WITH THE PRONOUN. 6486 05:30:07,424 --> 05:30:09,193 AS RESEARCHERS WE'RE OFTEN 6487 05:30:09,193 --> 05:30:13,330 PUTTING IN GRANTS FOR FEDERAL 6488 05:30:13,330 --> 05:30:13,764 FUNDING. 6489 05:30:13,764 --> 05:30:16,100 IF THE GOAL OF THE NIH IS TO 6490 05:30:16,100 --> 05:30:20,037 PROVIDE PUBLIC EN BENEFIT IN 6491 05:30:20,037 --> 05:30:23,807 HEALTH AND THE METRIC FOR WHO 6492 05:30:23,807 --> 05:30:25,376 GETS THE MARK IS OFF THE MARK A 6493 05:30:25,376 --> 05:30:31,348 LOT OF TIMES. 6494 05:30:31,348 --> 05:30:35,219 >> OUR NEXT QUESTION IS CAN YOU 6495 05:30:35,219 --> 05:30:39,123 SHARE EXAMPLES OF SUCCESSFUL 6496 05:30:39,123 --> 05:30:43,360 DATA DESTRUCTION RE-CONSENT OR 6497 05:30:43,360 --> 05:30:47,097 RETURN THAT RESPECTS INDIGENOUS 6498 05:30:47,097 --> 05:30:52,469 DATA SOVEREIGNTY WHAT CULTURAL 6499 05:30:52,469 --> 05:30:55,472 FACTORS SHOULD GUIDE END OF 6500 05:30:55,472 --> 05:31:00,878 PROJECT RETURN OR DESTRUCTION 6501 05:31:00,878 --> 05:31:03,214 AND FEEL FREE TO SPEAK TO DIRECT 6502 05:31:03,214 --> 05:31:13,691 EXPERIENCE OR HYPOTHETICAL. 6503 05:31:17,561 --> 05:31:24,435 >> I HAVE A LITTLE EXPERIENCE 6504 05:31:24,435 --> 05:31:26,470 STORING THE DATA WITHIN THE 6505 05:31:26,470 --> 05:31:27,638 TRIBE AND IT STAYED THERE. 6506 05:31:27,638 --> 05:31:35,212 THERE IS SOME TENSION NOW WITH 6507 05:31:35,212 --> 05:31:36,146 CURRENT STUDIES WITH WHAT YOUR 6508 05:31:36,146 --> 05:31:37,147 UNIVERSITY OR STATE REQUIRES AND 6509 05:31:37,147 --> 05:31:40,451 WHAT YOU GO INTO TREATMENT WITH 6510 05:31:40,451 --> 05:31:45,856 TRIBAL PARTNERS. 6511 05:31:45,856 --> 05:31:47,091 OR REQUIRING WHOLE DATA FOR A 6512 05:31:47,091 --> 05:31:47,992 PERIOD OF TIME. 6513 05:31:47,992 --> 05:31:49,360 WE HAVEN'T BEEN IN THIS 6514 05:31:49,360 --> 05:31:54,632 SITUATION WHERE WE'VE BEEN ASKED 6515 05:31:54,632 --> 05:31:56,133 TO DESTROY IT BUT HAD THE 6516 05:31:56,133 --> 05:32:00,471 CONVERSATIONS ABOUT BALANCING 6517 05:32:00,471 --> 05:32:11,015 THAT REQUIREMENT WITH THE STATE. 6518 05:32:15,653 --> 05:32:16,720 >> DATA DESTRUCTION. 6519 05:32:16,720 --> 05:32:23,294 SO I'VE HAD THE BLESSING OF 6520 05:32:23,294 --> 05:32:27,097 BEING A WORKER FOR VARIOUS 6521 05:32:27,097 --> 05:32:28,699 TRIBAL HEALTH ASSOCIATIONS OVER 6522 05:32:28,699 --> 05:32:30,267 THE YEARS AND ONE TIME WE HAD 6523 05:32:30,267 --> 05:32:34,271 DATA RETURNED TO OUR TRIBAL 6524 05:32:34,271 --> 05:32:35,306 HEALTH ORGANIZATION AS THE 6525 05:32:35,306 --> 05:32:40,311 TRIBAL AUTHORITY FOR THAT 6526 05:32:40,311 --> 05:32:42,479 PARTICULAR RESEARCH AND IT WAS 6527 05:32:42,479 --> 05:32:46,517 DATA RETURNED. 6528 05:32:46,517 --> 05:32:57,061 WE CHECKED IN WITH WE BROKE THE 6529 05:33:09,106 --> 05:33:15,512 CV INTO PIECES AND THAT WAS THE 6530 05:33:15,512 --> 05:33:16,013 DATA DESTRUCTION. 6531 05:33:16,013 --> 05:33:16,847 WE DIDN'T HAVE A PLAN. 6532 05:33:16,847 --> 05:33:20,784 WE LOOKED AT THE THING AND WENT 6533 05:33:20,784 --> 05:33:21,185 HMM. 6534 05:33:21,185 --> 05:33:24,588 THIS IS ALL OF IT AND THEY SAID 6535 05:33:24,588 --> 05:33:24,888 YES. 6536 05:33:24,888 --> 05:33:28,092 THE PAPERS IN THE FILE FOLDER AS 6537 05:33:28,092 --> 05:33:34,531 WELL AS THE CD THAT WAS SOCIAL 6538 05:33:34,531 --> 05:33:35,499 BEHAVIORAL RESEARCH. 6539 05:33:35,499 --> 05:33:37,334 I'LL PUT THREES IN THE SHEDDER 6540 05:33:37,334 --> 05:33:38,936 AND ROY IN THE ME TO DESTROY 6541 05:33:38,936 --> 05:33:39,837 THIS? 6542 05:33:39,837 --> 05:33:40,137 YES. 6543 05:33:40,137 --> 05:33:43,340 WE BEGAN THE PROCESS RIGHT THERE 6544 05:33:43,340 --> 05:33:45,909 IN THE MEETING. 6545 05:33:45,909 --> 05:33:51,448 THAT BEING SAID HOW DIFFICULT IT 6546 05:33:51,448 --> 05:33:55,052 CAN BE TO DO DATA DESTRUCTION 6547 05:33:55,052 --> 05:33:57,354 AND THREE YEARS AFTER THE DATE 6548 05:33:57,354 --> 05:33:58,722 OF LAST PUBLICATION AND THE 6549 05:33:58,722 --> 05:34:04,194 PROTOCOL APPROVED I HAD IT ON MY 6550 05:34:04,194 --> 05:34:14,338 CLFR -- 6551 05:34:20,344 --> 05:34:22,045 AND MY SIMPLE STATEMENT DIDN'T 6552 05:34:22,045 --> 05:34:23,814 INCLUDE ALL THE DIFFERENT 6553 05:34:23,814 --> 05:34:24,481 THINGS. 6554 05:34:24,481 --> 05:34:28,452 SO WE NEEDED TO THEN SUS OUT 6555 05:34:28,452 --> 05:34:34,024 WHAT WOULD BE THE PROCESS. 6556 05:34:34,024 --> 05:34:35,692 THERE'S POLICY AND PROCEDURE AND 6557 05:34:35,692 --> 05:34:36,960 TO ME THEY'RE LINKED ANIMAL BUT 6558 05:34:36,960 --> 05:34:42,966 SEPARATE. 6559 05:34:42,966 --> 05:34:47,438 NEED TO BE IN PLACE. 6560 05:34:47,438 --> 05:34:49,339 IT'S SOMETHING WE KEEP OUR EYE 6561 05:34:49,339 --> 05:34:53,043 ON AS INVESTIGATORS AND THE ONUS 6562 05:34:53,043 --> 05:34:55,813 WAS ON ME AS THE INVESTIGATOR. 6563 05:34:55,813 --> 05:34:58,315 IF I DIDN'T PUT THE MESSAGE IN 6564 05:34:58,315 --> 05:35:00,451 MY OUTLOOK CALENDAR AFTER THE 6565 05:35:00,451 --> 05:35:02,686 STUDY WAS COMPLETED AFTER THE 6566 05:35:02,686 --> 05:35:04,888 LAST DATE OF PUBLICATION, NO ONE 6567 05:35:04,888 --> 05:35:07,357 WAS WATCHING ME OR HOLDING ME 6568 05:35:07,357 --> 05:35:10,694 ACCOUNTABLE AND HOLDING MYSELF 6569 05:35:10,694 --> 05:35:11,395 ACCOUNT 6570 05:35:11,395 --> 05:35:11,695 ACCOUNTABLE. 6571 05:35:11,695 --> 05:35:12,463 CAN YOU TRAIN ACCOUNTABILITY? 6572 05:35:12,463 --> 05:35:18,769 I DON'T KNOW. 6573 05:35:18,769 --> 05:35:20,304 I HAVEN'T SEEN THAT FREQUENTLY 6574 05:35:20,304 --> 05:35:21,405 WITH THE PEOPLE I'VE TRAINED TO 6575 05:35:21,405 --> 05:35:24,475 SEE THAT KIND OF ACCOUNTABILITY 6576 05:35:24,475 --> 05:35:29,680 IN ACTION. 6577 05:35:29,680 --> 05:35:32,349 MAYBE I'M NOT THE BEST MENTOR 6578 05:35:32,349 --> 05:35:32,950 BUT I THINK ABOUT POLICY AND 6579 05:35:32,950 --> 05:35:40,157 PROCEDURE. 6580 05:35:40,157 --> 05:35:42,459 WE HAVE PROCEDURE AND HOW IT 6581 05:35:42,459 --> 05:35:44,127 FOLLOWED UP ON? 6582 05:35:44,127 --> 05:35:45,729 AFTER STUDIES ARE COMPLETE THERE 6583 05:35:45,729 --> 05:35:47,097 NEEDS TO BE PERSONAL DEVELOPMENT 6584 05:35:47,097 --> 05:35:48,332 FROM THE INVESTIGATOR AND 6585 05:35:48,332 --> 05:35:49,500 ORGANIZATIONS TO SEE IT THROUGH 6586 05:35:49,500 --> 05:35:51,201 TO THE END. 6587 05:35:51,201 --> 05:35:55,339 AND THE END IS WHAT WAS THE 6588 05:35:55,339 --> 05:35:57,574 INTENTION OF THOSE THAT HAD BEEN 6589 05:35:57,574 --> 05:35:58,275 PARTICIPATING AND WHEN I SAY 6590 05:35:58,275 --> 05:35:59,176 THOSE AGAIN, WHO DO WE CONSIDER 6591 05:35:59,176 --> 05:36:03,380 THOSE? 6592 05:36:03,380 --> 05:36:04,748 BOTH THE INDIVIDUAL PARTICIPANTS 6593 05:36:04,748 --> 05:36:07,351 AS WELL AS THE AGENCIES, 6594 05:36:07,351 --> 05:36:08,819 ORGANIZATIONS PARTICIPATING. 6595 05:36:08,819 --> 05:36:12,589 AND ONLY WAY TO KNOW IS 6596 05:36:12,589 --> 05:36:12,856 INQUIRING. 6597 05:36:12,856 --> 05:36:17,327 SO THAT WAS PART OF THE THING. 6598 05:36:17,327 --> 05:36:20,297 WE ASKED FOR OTHER PROJECTS 6599 05:36:20,297 --> 05:36:25,869 APPROPRIATE FOR BIOLOGICAL 6600 05:36:25,869 --> 05:36:29,306 SPECIMENS. 6601 05:36:29,306 --> 05:36:33,277 AND AGAIN THIS IS A BE PREPARED 6602 05:36:33,277 --> 05:36:36,446 TO RESPOND AND WHAT'S THE LEVEL 6603 05:36:36,446 --> 05:36:38,815 OF INQUIRY IN PREPARATION OF THE 6604 05:36:38,815 --> 05:36:40,684 DATA THAT MIGHT BE HAPPENING 6605 05:36:40,684 --> 05:36:42,019 THREE DAYS AFTER THE LAST 6606 05:36:42,019 --> 05:36:43,720 PUBLICATION OR THREE YEARS AFTER 6607 05:36:43,720 --> 05:36:48,525 THE LAST PUBLICATION AND BEING 6608 05:36:48,525 --> 05:36:49,459 PREPARED AND DILIGENT IN 6609 05:36:49,459 --> 05:36:50,027 FOLLOWING THROUGH. 6610 05:36:50,027 --> 05:36:55,699 AS WE'RE TALKING ABOUT THE 6611 05:36:55,699 --> 05:37:01,338 MANAGING THE DATA I FEEL IT'S 6612 05:37:01,338 --> 05:37:02,906 HOLDING ONE SELF ACCOUNTABLE AND 6613 05:37:02,906 --> 05:37:04,007 OTHERS AS WELL TO FIGURING OUT 6614 05:37:04,007 --> 05:37:05,842 WHAT THAT WOULD BE AND THEN 6615 05:37:05,842 --> 05:37:06,977 FIGURING OUT HOW TO GET THERE 6616 05:37:06,977 --> 05:37:17,321 AND STICKING TO IT. 6617 05:37:25,128 --> 05:37:25,195 6618 05:37:25,195 --> 05:37:28,498 >> IT'S HARD FOR ANY INDIVIDUAL 6619 05:37:28,498 --> 05:37:30,500 TO ENFORCE UPON THEMSELVES. 6620 05:37:30,500 --> 05:37:36,173 SOMETHING WE'RE ENACTING I THINK 6621 05:37:36,173 --> 05:37:40,444 HELPS AND NOT WAITING UNTIL THE 6622 05:37:40,444 --> 05:37:42,346 STATUTE OF DATA AVAILABILITY 6623 05:37:42,346 --> 05:37:43,313 EXPIRES. 6624 05:37:43,313 --> 05:37:46,249 WE USE RESOURCES LIKE NATIVE BIO 6625 05:37:46,249 --> 05:37:47,985 TO STORE ALL OF OUR DATA. 6626 05:37:47,985 --> 05:37:53,690 ONCE WE'RE COMPLETED WITH THE 6627 05:37:53,690 --> 05:37:55,592 ANALYSIS WE'VE TALKED ABOUT WHAT 6628 05:37:55,592 --> 05:37:58,962 SOME OF THE RESULTS ARE, 6629 05:37:58,962 --> 05:38:00,464 PUBLICATION IF THERE IS ONE AND 6630 05:38:00,464 --> 05:38:03,867 IF THE DATA LEAVES ALL OF OUR 6631 05:38:03,867 --> 05:38:05,235 SERVERS AND GOES DOWN AND IF WE 6632 05:38:05,235 --> 05:38:07,337 WANT TO BE ABLE TO DO ANYTHING 6633 05:38:07,337 --> 05:38:08,438 AGAIN WITH ANY INFORMATION THAT 6634 05:38:08,438 --> 05:38:09,773 WAS PART OF THE STUDY WE HAVE TO 6635 05:38:09,773 --> 05:38:11,375 GO BACK OUT AND ASK FOR 6636 05:38:11,375 --> 05:38:13,343 PERMISSION TO BE ABLE TO USE 6637 05:38:13,343 --> 05:38:19,416 THAT DATA EVEN THOUGH IT EXISTS 6638 05:38:19,416 --> 05:38:22,719 WITHIN THE FRAMEWORK OF WHAT WAS 6639 05:38:22,719 --> 05:38:24,488 ALLOWED AND REMOVES THE ABILITY 6640 05:38:24,488 --> 05:38:26,890 TO ENGAGE WITH THE DATA IN A WAY 6641 05:38:26,890 --> 05:38:29,459 THAT MAYBE DOESN'T LOOK EXACTLY 6642 05:38:29,459 --> 05:38:32,062 WHAT WAS INTENDED UNUSUALLY AND 6643 05:38:32,062 --> 05:38:33,797 THAT WAY HOLDS US ACCOUNTABLE TO 6644 05:38:33,797 --> 05:38:34,531 SOMEBODY ELSE. 6645 05:38:34,531 --> 05:38:36,466 THAT'S SOMETHING THAT MADE OUR 6646 05:38:36,466 --> 05:38:46,977 LIVES EASIER IN THIS PROCESS. 6647 05:38:54,518 --> 05:38:56,853 >> IN THE ORIGINAL CONTEXT YOU 6648 05:38:56,853 --> 05:38:57,921 PROPOSED WITH RESEARCHERS IT'S 6649 05:38:57,921 --> 05:39:01,892 ALWAYS EASY TO THINK OF THAT 6650 05:39:01,892 --> 05:39:04,461 NEXT QUESTION RELATED TO YOUR 6651 05:39:04,461 --> 05:39:05,162 HYPOTHESIS. 6652 05:39:05,162 --> 05:39:07,330 I'M CURIOUS IF YOU COULD SPEAK 6653 05:39:07,330 --> 05:39:09,533 MORE TO HAVE THE CONVERSATION 6654 05:39:09,533 --> 05:39:11,668 WITH COMMUNITY AND WHERE YOU 6655 05:39:11,668 --> 05:39:15,739 DRAW THE LINE IN THE PERSONAL 6656 05:39:15,739 --> 05:39:17,307 WORK ON WE HAVEN'T EXPLICITLY 6657 05:39:17,307 --> 05:39:19,009 TALKED ABOUT ANALYZING THE DATA 6658 05:39:19,009 --> 05:39:23,080 IN THIS WAY THOUGH WE'VE SEEN 6659 05:39:23,080 --> 05:39:24,014 THE TREND. 6660 05:39:24,014 --> 05:39:28,318 IF YOU COULD SPEAK MORE TO 6661 05:39:28,318 --> 05:39:28,952 EXAMPLES OF HOW YOU'VE HANDLED 6662 05:39:28,952 --> 05:39:39,062 THAT. 6663 05:39:39,996 --> 05:39:42,599 >> PEOPLE WERE OUT WITH OUR 6664 05:39:42,599 --> 05:39:43,333 COMMUNITY PARTNERS TALKING ABOUT 6665 05:39:43,333 --> 05:39:53,710 DIFFERENT S GOING ON. 6666 05:39:54,010 --> 05:39:55,579 WE'RE ABLE TO TALK ABOUT WHAT 6667 05:39:55,579 --> 05:39:58,215 EXACTLY WE HAD DONE AND WHAT THE 6668 05:39:58,215 --> 05:40:03,653 NEXT QUESTION TO US LOOK LIKE 6669 05:40:03,653 --> 05:40:12,462 WITH THE HOPE THAT THEY'LL BE 6670 05:40:12,462 --> 05:40:14,631 ABLE TO COME BACK TO US SAYING, 6671 05:40:14,631 --> 05:40:16,466 YES, GO AND WE'LL BE ABLE TO 6672 05:40:16,466 --> 05:40:18,335 RECOVER THE DATA WITH OUR OWN 6673 05:40:18,335 --> 05:40:20,103 SERVER TO RE-ANALYZE IT AND LOOK 6674 05:40:20,103 --> 05:40:24,474 AT THE QUESTION, ANSWER THE 6675 05:40:24,474 --> 05:40:30,580 QUESTION AND REPEAT THE PROCESS 6676 05:40:30,580 --> 05:40:33,216 ONCE WE'VE BEEN ABLE TO OBTAIN 6677 05:40:33,216 --> 05:40:34,184 INFORMATION AND IF WE'RE GOING 6678 05:40:34,184 --> 05:40:34,951 TO ANSWER ANOTHER QUESTION IT 6679 05:40:34,951 --> 05:40:36,052 WILL BE THE SAME THING. 6680 05:40:36,052 --> 05:40:38,355 GOING BACK OUT TO THE COMMUNITY 6681 05:40:38,355 --> 05:40:40,457 AND TALK TO COMMUNITY 6682 05:40:40,457 --> 05:40:41,491 REPRESENTATIVES TO GET 6683 05:40:41,491 --> 05:40:42,092 AUTHORIZATION AT THE TRIBAL 6684 05:40:42,092 --> 05:40:44,494 LEVEL AND RECOVER THE DATA AND 6685 05:40:44,494 --> 05:40:44,761 REANALYZE. 6686 05:40:44,761 --> 05:40:46,897 IT TAKES MORE TIME PUT THEN WE 6687 05:40:46,897 --> 05:40:48,465 KNOW EVER TIME WE'RE ANSWERING A 6688 05:40:48,465 --> 05:40:50,700 QUESTION THE QUESTION IS VALUE 6689 05:40:50,700 --> 05:40:56,006 TO THE COMMUNITY WHICH IS THE 6690 05:40:56,006 --> 05:41:03,513 MOST IMPORTANT PIECE. 6691 05:41:03,513 --> 05:41:08,385 IN A SIMILAR EXPERIENCE AND ONE 6692 05:41:08,385 --> 05:41:12,656 EXAMPLE WE HAD AND AS 6693 05:41:12,656 --> 05:41:14,024 RESEARCHERS WE THOUGHT THAT WAS 6694 05:41:14,024 --> 05:41:15,192 RELATED TO THE RESEARCH QUESTION 6695 05:41:15,192 --> 05:41:18,662 AND POSE THAT BACK TO OUR TRIBAL 6696 05:41:18,662 --> 05:41:19,329 PARTNERS. 6697 05:41:19,329 --> 05:41:24,935 THEY SAID, YEAH WE COULD SEE 6698 05:41:24,935 --> 05:41:27,470 THAT BUT STILL WANT TO PUT THE 6699 05:41:27,470 --> 05:41:30,340 QUESTION TO THE FULL BOARD. 6700 05:41:30,340 --> 05:41:32,108 WE HAD TO WRITE AN AMENDMENT AND 6701 05:41:32,108 --> 05:41:33,977 PUT IT THROUGH TO THE BOARD AND 6702 05:41:33,977 --> 05:41:36,046 COMPLETELY FINE BUT WE HAD TO 6703 05:41:36,046 --> 05:41:36,613 ASK. 6704 05:41:36,613 --> 05:41:39,950 A LOT OF IT IS LEARNING THROUGH 6705 05:41:39,950 --> 05:41:42,018 CONVERSATION AND NOT HAVING THIS 6706 05:41:42,018 --> 05:41:48,658 BLANKET STATEMENT BUT IT 6707 05:41:48,658 --> 05:41:49,993 DEPENDS. 6708 05:41:49,993 --> 05:41:50,560 HAVING THE CONVERSATIONS IS 6709 05:41:50,560 --> 05:41:59,102 HELPFUL. 6710 05:41:59,102 --> 05:42:01,671 >> WHERE DO TRAINEES FALL INTO 6711 05:42:01,671 --> 05:42:04,307 THE DIFFERENT PARTS AND HOW DO 6712 05:42:04,307 --> 05:42:05,609 YOU SUPPORT THEM? 6713 05:42:05,609 --> 05:42:07,544 UNRECONNECTING WITH COMMUNITIES 6714 05:42:07,544 --> 05:42:16,253 OR SHARING DATA OR PUBLICATIOS 6715 05:42:16,253 --> 05:42:17,487 AND AS A TRAINEE HOW DO YOU 6716 05:42:17,487 --> 05:42:27,731 SUPPORT THEM? 6717 05:42:32,969 --> 05:42:35,005 >> FULL TIME EMPLOYEE WITH 6718 05:42:35,005 --> 05:42:40,043 BENEFITS MEMBER OF MY TEAM, 6719 05:42:40,043 --> 05:42:40,744 DON'T REQUIRE AS MUCH AS I CAN 6720 05:42:40,744 --> 05:42:43,246 WHEN I HAVE THE AUTHORITY AND MY 6721 05:42:43,246 --> 05:42:48,218 AGENCY DOESN'T I WOULD PUT THEM 6722 05:42:48,218 --> 05:42:51,154 AT THE HIGHEST LEVEL OF 6723 05:42:51,154 --> 05:42:54,124 EXPERTISE AND PROVIDING 6724 05:42:54,124 --> 05:42:55,525 COMMUNITY EXPERTISE OTHER TYPES 6725 05:42:55,525 --> 05:42:56,826 OF TRAINING AND EDUCATION. 6726 05:42:56,826 --> 05:43:05,468 AND SO THINKING ABOUT THAT AS 6727 05:43:05,468 --> 05:43:07,904 THE TEAM SCIENCE WE TEND TO DO 6728 05:43:07,904 --> 05:43:10,340 IN MY AGENCY LITERALLY AT THE 6729 05:43:10,340 --> 05:43:12,709 SAME TABLE IN DISCUSSION ON 6730 05:43:12,709 --> 05:43:18,248 THESE THINGS. 6731 05:43:18,248 --> 05:43:19,349 WE'RE HAVING DISCUSSION BUT THE 6732 05:43:19,349 --> 05:43:27,357 WAY WE LEAD OUR PROJECTS IS MORE 6733 05:43:27,357 --> 05:43:28,058 DISCUSSION BASED AND NOT JUST 6734 05:43:28,058 --> 05:43:29,559 JUST WHAT WE'RE DOING. 6735 05:43:29,559 --> 05:43:31,494 HERE'S THE PROTOCOL. 6736 05:43:31,494 --> 05:43:33,763 DID YOU READ THE ANNUAL 6737 05:43:33,763 --> 05:43:34,064 OPERATIONS. 6738 05:43:34,064 --> 05:43:36,266 IT'S ON THE SHARE DRIVE. 6739 05:43:36,266 --> 05:43:39,102 LOOK AT SLACK, WOULD YOU? 6740 05:43:39,102 --> 05:43:41,805 NO, INSTEAD IT'S DISCUSSION 6741 05:43:41,805 --> 05:43:43,073 BASED BUT ALSO HOW I TALK AROUND 6742 05:43:43,073 --> 05:43:46,042 MY DINNER TABLE AND HOW THINGS 6743 05:43:46,042 --> 05:43:49,846 WORK IN GENERAL FOR ME. 6744 05:43:49,846 --> 05:43:51,982 I WOULD SAY EVERY INVESTIGATOR 6745 05:43:51,982 --> 05:43:54,050 HAS THEIR OWN WAY OF DOING THESE 6746 05:43:54,050 --> 05:43:54,417 THINGS. 6747 05:43:54,417 --> 05:43:56,219 CHRIS YOU'VE WORKED WITH ME, YOU 6748 05:43:56,219 --> 05:43:58,922 KNOW HOW WE CHAT ABOUT S AND 6749 05:43:58,922 --> 05:44:01,091 WHAT WAS -- LET'S GO BACK TO 6750 05:44:01,091 --> 05:44:02,258 WHAT THE RESEARCH QUESTION WAS 6751 05:44:02,258 --> 05:44:03,994 AND LOOK AT THE INSTRUMENT AND 6752 05:44:03,994 --> 05:44:08,431 LOOK AT THE INFORMED CONSENT AND 6753 05:44:08,431 --> 05:44:11,434 MAKE SURE WE'RE DOTTING Is AND 6754 05:44:11,434 --> 05:44:15,872 CROSSING Ts, IN THE WEB WE'RE 6755 05:44:15,872 --> 05:44:20,043 WEAVING DID WE PULL IT ALL THE 6756 05:44:20,043 --> 05:44:21,478 WAY THROUGH IF NOT, HOW DO WE 6757 05:44:21,478 --> 05:44:22,012 TIE IT UP. 6758 05:44:22,012 --> 05:44:23,880 THOSE ARE QUESTIONS YOU GET TO 6759 05:44:23,880 --> 05:44:25,749 THE SPACE WHERE YOU CAN ASK. 6760 05:44:25,749 --> 05:44:28,184 EVERYBODY CAN ASK THE QUESTION 6761 05:44:28,184 --> 05:44:30,353 AND EVERYBODY'S DIALOGUING. 6762 05:44:30,353 --> 05:44:31,988 NO MATTER WHO ASKED THE QUESTION 6763 05:44:31,988 --> 05:44:36,459 WHEN IT WAS ASKED IN THE PROCESS 6764 05:44:36,459 --> 05:44:37,260 IT'S NEVER TOO LATE. 6765 05:44:37,260 --> 05:44:38,495 YOU CAN MOVE FORWARD AND HAVE 6766 05:44:38,495 --> 05:44:41,331 THOSE DISCUSSIONS. 6767 05:44:41,331 --> 05:44:46,569 WE CAN CHECK IT OUT. 6768 05:44:46,569 --> 05:44:51,574 AND ALL OF US IS PEOPLE THAT 6769 05:44:51,574 --> 05:44:56,646 WANT TO USE THE RESTROOM, HEY, 6770 05:44:56,646 --> 05:45:00,450 LET ME GET BACK TO YOU ON IT AND 6771 05:45:00,450 --> 05:45:03,920 THEN DO IT. 6772 05:45:03,920 --> 05:45:10,827 IN TRAINING IT'S SHADOWING, ROLE 6773 05:45:10,827 --> 05:45:12,295 MODELLING, WALKING ALONG SIDE 6774 05:45:12,295 --> 05:45:14,264 AND YOU COME WITH ME WITH 6775 05:45:14,264 --> 05:45:15,365 WHATEVER WE'RE DOING AND THE 6776 05:45:15,365 --> 05:45:18,635 NEXT DAY OR WHATEVER MEETING. 6777 05:45:18,635 --> 05:45:18,902 WHATEVER. 6778 05:45:18,902 --> 05:45:20,236 THAT'S THE MODEL WE TEND TO USE 6779 05:45:20,236 --> 05:45:21,738 WITHIN OUR ORGANIZATION AND WE 6780 05:45:21,738 --> 05:45:25,542 ALSO DON'T SAY WITH VERY A LAG. 6781 05:45:25,542 --> 05:45:31,848 THERE'S NEVER BEEN A LAB. 6782 05:45:31,848 --> 05:45:33,950 IT'S JUST NOT THAT WAY IN THE 6783 05:45:33,950 --> 05:45:35,852 WAY MY GROUP TENDS TO WORK. 6784 05:45:35,852 --> 05:45:39,322 SO THERE'S NOT THAT HIERARCHY, I 6785 05:45:39,322 --> 05:45:39,522 GUESS. 6786 05:45:39,522 --> 05:45:43,193 I'M SURE ALL OF US AS DIFFERENT 6787 05:45:43,193 --> 05:45:44,461 ADVOCATORS FOLLOW DIFFERENT 6788 05:45:44,461 --> 05:45:54,871 FORMS AND WAYS OF BEING. 6789 05:45:57,774 --> 05:45:59,776 AS AN INVESTIGATOR I'M ALWAYS 6790 05:45:59,776 --> 05:46:02,312 CURIOUS WHAT ARE YOUR NEEDS AND 6791 05:46:02,312 --> 05:46:03,813 HOW DO YOU GO ABOUT MAKING YOUR 6792 05:46:03,813 --> 05:46:08,918 DECISIONS AND WHAT'S THAT LOOK 6793 05:46:08,918 --> 05:46:09,285 LIKE? 6794 05:46:09,285 --> 05:46:19,829 IT DOESN'T STOP HAVING SOMETHING 6795 05:46:23,199 --> 05:46:24,934 TO LEARN AND TO GIVE. 6796 05:46:24,934 --> 05:46:26,936 >> I CAN JUMP IN WITH ANOTHER 6797 05:46:26,936 --> 05:46:28,771 DATA SHARING AND DISSEMINATION 6798 05:46:28,771 --> 05:46:30,573 QUESTION. 6799 05:46:30,573 --> 05:46:32,008 THINKING VERY PRACTICALLY AS FAR 6800 05:46:32,008 --> 05:46:35,712 AS IF YOU'RE AN INVESTIGATOR 6801 05:46:35,712 --> 05:46:43,353 APPLYING FOR ANYONE -- NIH FU 6802 05:46:43,353 --> 05:46:46,556 FUNDING WHAT SHOULD BE AGREED 6803 05:46:46,556 --> 05:46:51,227 UPON BEFORE ACOLLECTING DATA AND 6804 05:46:51,227 --> 05:46:52,462 THINKING ABOUT AN INDIGENOUS 6805 05:46:52,462 --> 05:46:53,997 DATA SOVEREIGNTY POLICY, WHAT 6806 05:46:53,997 --> 05:46:59,736 SHOULD NIH BE LOOKING FOR IN 6807 05:46:59,736 --> 05:47:03,106 WRITING BETWEEN AN INVESTIGATOR 6808 05:47:03,106 --> 05:47:04,440 AROUND TRIBE AND INDIGENOUS 6809 05:47:04,440 --> 05:47:06,042 COMMUNITY ABOUT PUBLICATION AND 6810 05:47:06,042 --> 05:47:15,018 DISSEMINATION? 6811 05:47:15,018 --> 05:47:16,219 >> SOMETHING I SHOULD HAVE 6812 05:47:16,219 --> 05:47:17,520 TAGGED ON TO THE LAST PART. 6813 05:47:17,520 --> 05:47:19,989 THE WAY WE THINK ABOUT 6814 05:47:19,989 --> 05:47:24,194 DISSEMINATION IS VERY LIKE 6815 05:47:24,194 --> 05:47:25,328 PUBLICATIONS OR LIKE FINDINGS 6816 05:47:25,328 --> 05:47:26,129 FROM THE STUDY. 6817 05:47:26,129 --> 05:47:31,034 SOMETHING THAT STRUCK ME IN THE 6818 05:47:31,034 --> 05:47:32,769 LAST YEAR IS WE COMPLETED A 6819 05:47:32,769 --> 05:47:35,104 STUDY AND WE WERE LOOKING AT THE 6820 05:47:35,104 --> 05:47:45,582 DATA SET AND WANTED TO USE 6821 05:47:46,783 --> 05:47:48,184 PRELIM DATA FOR THE NEXT SECTION 6822 05:47:48,184 --> 05:47:48,384 GRANT. 6823 05:47:48,384 --> 05:47:50,653 WE WENT TO PARTNERS AND SAID 6824 05:47:50,653 --> 05:47:52,488 WE'RE THINKING ABOUT THE NEXT 6825 05:47:52,488 --> 05:47:54,390 PROJECT. 6826 05:47:54,390 --> 05:47:57,327 IS IT OKAY TO USE THE DATA TO 6827 05:47:57,327 --> 05:47:58,328 WRITE THE SECTION. 6828 05:47:58,328 --> 05:48:00,129 IT'S NOT GOING UP TO THE PUBLIC 6829 05:48:00,129 --> 05:48:02,131 BUT FOR THE GRANT APPLICATION. 6830 05:48:02,131 --> 05:48:08,204 THIS WAS A TRIBAL PRART NER WHO 6831 05:48:08,204 --> 05:48:12,442 HAS WORKED WITH INVESTIGATORS 6832 05:48:12,442 --> 05:48:14,444 FOR DECADES AND THEY SAID NOBODY 6833 05:48:14,444 --> 05:48:15,578 EVER ASKED US THAT BEFORE. 6834 05:48:15,578 --> 05:48:19,349 THAT WAS STRIKING TO ME AND 6835 05:48:19,349 --> 05:48:24,954 THOSE MOMENTS HELP MAKE ME PAUSE 6836 05:48:24,954 --> 05:48:28,157 SO HAVING THE BROADER VIEW OF 6837 05:48:28,157 --> 05:48:31,194 WHAT IS SHARING FINDINGS MEAN 6838 05:48:31,194 --> 05:48:39,369 AND MAY BE IT'S NOT BROADLY BUT 6839 05:48:39,369 --> 05:48:42,839 ASKING THE QUESTION. 6840 05:48:42,839 --> 05:48:45,041 AND TRYING TO KEEP ASSUMPTION 6841 05:48:45,041 --> 05:48:49,078 TO A MINIMUM. 6842 05:48:49,078 --> 05:48:51,281 AND YOU CONTEXT FROM THERE OR 6843 05:48:51,281 --> 05:48:54,117 NOT AND POSING THE QUESTIONS AND 6844 05:48:54,117 --> 05:48:59,455 MAKE SURE NOT JUST THE WE IS. 6845 05:48:59,455 --> 05:49:01,190 I -- IS PINNED DOWN BUT WHAT 6846 05:49:01,190 --> 05:49:01,824 DOES SHARING AND DISSEMINATION 6847 05:49:01,824 --> 05:49:05,361 MEAN. 6848 05:49:05,361 --> 05:49:08,831 >> I'M GOING TO JUMP ON BOARD 6849 05:49:08,831 --> 05:49:14,337 AND KAYLA, SORRY, NOT ANSWER 6850 05:49:14,337 --> 05:49:24,847 YOUR QUESTION BUT I THINK OF 6851 05:49:32,522 --> 05:49:35,591 DATA REPOSITORIES AND WORK WITH 6852 05:49:35,591 --> 05:49:37,126 SPECIFIC TRIBES ON SPECIFIC 6853 05:49:37,126 --> 05:49:38,061 QUESTIONS ON CULTURAL AND 6854 05:49:38,061 --> 05:49:42,365 COMMUNITY CONTEXT AND 6855 05:49:42,365 --> 05:49:43,700 QUALITATIVE DATA AND AT BEST I 6856 05:49:43,700 --> 05:49:48,738 WORK WITH A TRIBE AND THEY TAKE 6857 05:49:48,738 --> 05:49:51,574 THE DATA BACK AND I DON'T KNOW 6858 05:49:51,574 --> 05:49:53,443 THEY KNOW WHAT TO DO WITH IT 6859 05:49:53,443 --> 05:49:53,743 EITHER. 6860 05:49:53,743 --> 05:49:57,714 DO I WORK IN ALASKA OR URBAN 6861 05:49:57,714 --> 05:49:59,015 COMMUNITIES THAT DON'T HAVE A 6862 05:49:59,015 --> 05:50:07,357 BODY THAT WOULD STORE THAT DATA 6863 05:50:07,357 --> 05:50:09,125 A 6864 05:50:09,125 --> 05:50:10,326 AND WHETHER WHAT OPPORTUNITIES 6865 05:50:10,326 --> 05:50:12,161 ARE OUT THERE AND WHETHER 6866 05:50:12,161 --> 05:50:14,731 THERE'S A RULE AND HOW DO WE 6867 05:50:14,731 --> 05:50:16,466 COLLABORATE ON THINKING WHAT DO 6868 05:50:16,466 --> 05:50:18,368 WE DO WITH THE SMALLER DATA SETS 6869 05:50:18,368 --> 05:50:21,637 THAT CAN SOMETIMES GO TO THE 6870 05:50:21,637 --> 05:50:24,440 SIDE AND WHEN YOU THINK ABOUT 6871 05:50:24,440 --> 05:50:26,809 TRAINEES OR THINK ABOUT 6872 05:50:26,809 --> 05:50:27,677 SECONDARY DATA ANALYSIS, 6873 05:50:27,677 --> 05:50:29,779 DOCTORAL STUDENTS COMING IN AND 6874 05:50:29,779 --> 05:50:32,448 WANTING DATA SETS AND HOW COULD 6875 05:50:32,448 --> 05:50:35,151 WE MAKE THOSE -- THOSE ARE 6876 05:50:35,151 --> 05:50:37,353 IMPORTANT AND THEN I START TO 6877 05:50:37,353 --> 05:50:42,725 THINK ABOUT HOW DO WE UNDERSTAND 6878 05:50:42,725 --> 05:50:44,961 ACROSS THE BOARD WHAT THE 6879 05:50:44,961 --> 05:50:46,529 CULTURALLY SPECIFIC MEASURES 6880 05:50:46,529 --> 05:50:51,167 AND/OR INVENTIONS LOOK LIKE. 6881 05:50:51,167 --> 05:50:55,872 WHEN WE THINK OF MOVING SCIENCE 6882 05:50:55,872 --> 05:50:56,739 FORWARD WHERE ARE OPPORTUNITIES 6883 05:50:56,739 --> 05:50:58,007 TO SAY WHERE DID IT WORK AND 6884 05:50:58,007 --> 05:50:59,642 WHERE DID IT NOT. 6885 05:50:59,642 --> 05:51:03,312 THAT'S THE HARD THING TO TALK 6886 05:51:03,312 --> 05:51:04,447 ABOUT AND HARD THING TO TALK 6887 05:51:04,447 --> 05:51:09,752 ABOUT WITH TRIBES. 6888 05:51:09,752 --> 05:51:16,159 AN CONSTRUCTS OF COMPLEX LIVED 6889 05:51:16,159 --> 05:51:22,999 EXPERIEN 6890 05:51:22,999 --> 05:51:25,968 EXPERIENCES AND HOW THAT POPS IN 6891 05:51:25,968 --> 05:51:27,236 A MODEL AND WHERE ARE THERE 6892 05:51:27,236 --> 05:51:31,240 OPPORTUNITIES TO HAVE SOME 6893 05:51:31,240 --> 05:51:33,543 REPOSITORIES OR CHANCES TO SHARE 6894 05:51:33,543 --> 05:51:38,481 WITH SOME SMALLER PROJECTS OR 6895 05:51:38,481 --> 05:51:40,416 DATA SETS WE COULD THINK 6896 05:51:40,416 --> 05:51:42,385 COLLECTIVELY HOW WE'RE MOVING 6897 05:51:42,385 --> 05:51:42,985 SOME QUESTIONS AND SCIENCE 6898 05:51:42,985 --> 05:51:47,957 FORWARD OF MEASURING OR 6899 05:51:47,957 --> 05:51:48,524 UNDERSTANDING AND UTILIZING 6900 05:51:48,524 --> 05:51:57,333 THESE THINGS. 6901 05:51:57,333 --> 05:51:59,402 >> I'VE BEEN THINKING ABOUT THAT 6902 05:51:59,402 --> 05:52:01,337 AS A BEHAVIORAL SCIENTIST AND 6903 05:52:01,337 --> 05:52:04,440 THE USE OF METALABELS AND MOU TO 6904 05:52:04,440 --> 05:52:07,710 DO REPOSITORIES OF SMALLER 6905 05:52:07,710 --> 05:52:09,545 SAMPLES AND HOW IMPORTANT IT CAN 6906 05:52:09,545 --> 05:52:11,881 BE AND THE WORK FROM LOCAL 6907 05:52:11,881 --> 05:52:13,149 CONTEXT MAY BE ABLE TO SUPPORT 6908 05:52:13,149 --> 05:52:18,120 AND HAVE CONVERSATIONS AND BUILD 6909 05:52:18,120 --> 05:52:23,392 THAT INTO OUR PROCESSES AND IT'S 6910 05:52:23,392 --> 05:52:25,194 FOR THE ROOM TO DISCUSS BECAUSE 6911 05:52:25,194 --> 05:52:26,295 IT'S A COMMUNITY PROCESS YOU 6912 05:52:26,295 --> 05:52:27,930 CREATE THOSE ONE WILL THE 6913 05:52:27,930 --> 05:52:28,197 COMMUNITY. 6914 05:52:28,197 --> 05:52:33,469 IT'S A WAY OF HAVING THAT LEGACY 6915 05:52:33,469 --> 05:52:36,205 CONTINUE AND IT CAN BE BUILT 6916 05:52:36,205 --> 05:52:36,639 UPON. 6917 05:52:36,639 --> 05:52:38,774 I THINK IT'S AN INTERESTING 6918 05:52:38,774 --> 05:52:39,242 HOPEFULLY BENEFICIAL 6919 05:52:39,242 --> 05:52:49,485 CONVERSATION. 6920 05:52:51,721 --> 05:52:53,689 >> I'LL ADD TO MY THEME OF BEING 6921 05:52:53,689 --> 05:52:55,358 FLEXIBLE IS MAKING SURE THE 6922 05:52:55,358 --> 05:52:56,559 CONVERSATIONS ARE CONTINUOUS. 6923 05:52:56,559 --> 05:53:00,730 THE FINDINGS FROM THE DATA CAN 6924 05:53:00,730 --> 05:53:02,431 CHANGE BY THE QUESTION WE'RE 6925 05:53:02,431 --> 05:53:05,501 ASKING AND THE COMMUNITY MAY 6926 05:53:05,501 --> 05:53:07,370 HAVE THE QUESTION MAYBE EVOLVING 6927 05:53:07,370 --> 05:53:07,904 OVER TIME AS THE DATA IS 6928 05:53:07,904 --> 05:53:16,178 COLLECTED. 6929 05:53:16,178 --> 05:53:18,915 WHEN A FINDING IS FOUND MAYBE 6930 05:53:18,915 --> 05:53:20,449 THE QUESTION MAYBE THE QUESTION 6931 05:53:20,449 --> 05:53:21,517 BECOMES SOMETHING DIFFERENT 6932 05:53:21,517 --> 05:53:25,254 AFTER THAT TYPE OF FINDING. 6933 05:53:25,254 --> 05:53:30,393 HAVE THAT CONTINUOUS 6934 05:53:30,393 --> 05:53:35,531 CONVERSATION AND REANALYZING, 6935 05:53:35,531 --> 05:53:36,465 ASKING DIFFERENT QUESTIONS 6936 05:53:36,465 --> 05:53:38,968 ALLOWS FOR THE COMMUNITY AND 6937 05:53:38,968 --> 05:53:40,469 RESEARCH PARTICIPANTS TO DECIDE 6938 05:53:40,469 --> 05:53:43,339 WHAT THEIR DATA IS ACTUALLY 6939 05:53:43,339 --> 05:53:43,773 CONTRIBUTING TO. 6940 05:53:43,773 --> 05:53:48,578 I THINK MAKING SURE THE 6941 05:53:48,578 --> 05:53:51,514 CONVERSATIONS DON'T END AFTER 6942 05:53:51,514 --> 05:53:52,481 THE MAIN QUESTION IS ANSWERED 6943 05:53:52,481 --> 05:53:53,883 BECAUSE I THINK THE QUESTIONS 6944 05:53:53,883 --> 05:54:02,458 ARE ALWAYS EVOLVING. 6945 05:54:02,458 --> 05:54:05,294 >> FOR THE PANELISTS IF ANYONE 6946 05:54:05,294 --> 05:54:07,830 WANTS TO GIVE A LAST WORD ON THE 6947 05:54:07,830 --> 05:54:11,867 TOPIC WE'LL HOLD SPACE TO DO 6948 05:54:11,867 --> 05:54:13,202 THAT AND IF NOT WE'LL GIVE FOLKS 6949 05:54:13,202 --> 05:54:16,906 A CHANCE TO WEIGH IN ON THE 6950 05:54:16,906 --> 05:54:17,206 SUBJECT. 6951 05:54:17,206 --> 05:54:19,809 BEYOND THAT WHILE HAVE A GENERAL 6952 05:54:19,809 --> 05:54:24,480 DISCUSSION ON KEY TAKEAWAYS OR 6953 05:54:24,480 --> 05:54:25,848 NEW THOUGHTS THAT FORMED AND 6954 05:54:25,848 --> 05:54:27,183 BRING TO THE TABLE AS WE DIGEST 6955 05:54:27,183 --> 05:54:28,451 THE INFORMATION AND 6956 05:54:28,451 --> 05:54:38,694 CONVERSATION. 6957 05:54:41,464 --> 05:54:44,100 >> THERE'S ONE THING I WANTED TO 6958 05:54:44,100 --> 05:54:44,400 REITERATE. 6959 05:54:44,400 --> 05:54:46,268 JOE MENTIONED IN THE LAST 6960 05:54:46,268 --> 05:54:49,372 SESSION THE IDEA THAT WE'VE 6961 05:54:49,372 --> 05:54:51,841 BECOME VERY FIXATED ON HUMAN 6962 05:54:51,841 --> 05:54:57,113 ASSOCIATED MATERIALS AS BEING A 6963 05:54:57,113 --> 05:55:01,417 POINT OF IDENTIFICATION. 6964 05:55:01,417 --> 05:55:04,920 THEY'RE FUNDING A LARGE FORCE OF 6965 05:55:04,920 --> 05:55:07,823 FUNDAMENTAL BIOLOGY THAT NIGHT 6966 05:55:07,823 --> 05:55:10,026 TO BE PART OF THE CONVERSATION. 6967 05:55:10,026 --> 05:55:12,928 THE MICROBIOME IS AN EASILY 6968 05:55:12,928 --> 05:55:14,964 IDENTIFIABLE MARKER FOR CERTAIN 6969 05:55:14,964 --> 05:55:17,833 POPULATIONS AND THAT'S TRUE 6970 05:55:17,833 --> 05:55:18,701 WITHIN NATIVE NATIONS IN THE 6971 05:55:18,701 --> 05:55:20,202 U.S. BASED ON THE STUDY WE'RE 6972 05:55:20,202 --> 05:55:30,579 JUST WRAPPING UP NOW. 6973 05:55:31,914 --> 05:55:34,417 ISOLATED AND THE PROXY DATA CAN 6974 05:55:34,417 --> 05:55:35,885 INFORM HUMAN SUBJECTS. 6975 05:55:35,885 --> 05:55:41,023 AND SO THINKING ABOUT 6976 05:55:41,023 --> 05:55:44,860 APPLICATION OF THESE IDEAS 6977 05:55:44,860 --> 05:55:45,928 BROADLY INCLUDING GMS WHERE IT'S 6978 05:55:45,928 --> 05:55:51,400 LIKE, IT DOESN'T APPLY TO ME 6979 05:55:51,400 --> 05:55:55,371 BECAUSE I'M DOING X, THAT IDEA 6980 05:55:55,371 --> 05:56:05,915 NEED TO BE PUSHED BACK AGAINST. 6981 05:56:06,649 --> 05:56:07,349 ALL RIGHT. 6982 05:56:07,349 --> 05:56:10,152 WE'LL OPEN UP TO FOLKS GENERALLY 6983 05:56:10,152 --> 05:56:11,887 WHO WANT TO WEIGH IN ON THE 6984 05:56:11,887 --> 05:56:15,958 TOPIC OF ETHICAL DISSEMINATION 6985 05:56:15,958 --> 05:56:19,161 STRATEGIES FOR PUBLICATION. 6986 05:56:19,161 --> 05:56:20,496 >> ONE QUICK THING. 6987 05:56:20,496 --> 05:56:22,231 IN MONTANA IT'S DIFFERENT. 6988 05:56:22,231 --> 05:56:28,270 MOST NATIVE PEOPLE STILL LIVE ON 6989 05:56:28,270 --> 05:56:28,604 RESERVATIONS. 6990 05:56:28,604 --> 05:56:33,242 IT'S VERY IMPORTANT FOR PEOPLE 6991 05:56:33,242 --> 05:56:34,944 TO WORK WITH THE TRIBAL 6992 05:56:34,944 --> 05:56:38,347 PRESERVATION OFFICES ESPECIALLY 6993 05:56:38,347 --> 05:56:41,150 BECAUSE IT'S WITH IN THE 6994 05:56:41,150 --> 05:56:43,385 CATEGORY OF NECRA AND HUMAN 6995 05:56:43,385 --> 05:56:52,461 REMAINS FOR SOME TRIBES. 6996 05:56:52,461 --> 05:56:55,030 ALSO AS A MEMBER OF CERTAIN 6997 05:56:55,030 --> 05:56:56,365 CULTURAL SOCIETIES YOU AN 6998 05:56:56,365 --> 05:57:06,909 INTERACTS WITH OBJECTS OR ITEMS 6999 05:57:12,515 --> 05:57:22,424 INCLUDING DECEASED PEOPLE AND I 7000 05:57:22,424 --> 05:57:24,493 UNDERSTAND THE LEVEL OF 7001 05:57:24,493 --> 05:57:28,464 SPECIFICITY SAYING WE BUT DON'T 7002 05:57:28,464 --> 05:57:32,368 THINK AN ISSUE OF SOCIAL 7003 05:57:32,368 --> 05:57:33,035 SCIENTISTS IS WE HAVE BECOME 7004 05:57:33,035 --> 05:57:35,137 TRAINED TO BE AFRAID IN SPEAKING 7005 05:57:35,137 --> 05:57:36,472 WE MICROMANAGE WHAT WE'RE 7006 05:57:36,472 --> 05:57:37,306 TALKING ABOUT. 7007 05:57:37,306 --> 05:57:42,678 I THINK WE'RE ALL COMING TO A 7008 05:57:42,678 --> 05:57:44,180 SPACE RECOGNIZING WE COME FROM 7009 05:57:44,180 --> 05:57:44,747 POSITIONALITIES WITHIN OUR 7010 05:57:44,747 --> 05:57:48,984 IDENTITIES. 7011 05:57:48,984 --> 05:57:55,457 I THINK WE CAN TALK ABOUT WHAT 7012 05:57:55,457 --> 05:57:58,160 IS COMMON. 7013 05:57:58,160 --> 05:58:00,462 AND GO TO ISSUES THAT HAVE 7014 05:58:00,462 --> 05:58:05,534 STRONG STANCES TAKEN BY SOME 7015 05:58:05,534 --> 05:58:11,907 TRIBES AND THERE'S ISSUES AND 7016 05:58:11,907 --> 05:58:20,449 REASONS FOR THAT BEYOND MY 7017 05:58:20,449 --> 05:58:21,150 UNDERSTANDING. 7018 05:58:21,150 --> 05:58:31,560 AND I HAVE TO SAY THAT. 7019 05:58:33,162 --> 05:58:36,165 WHAT DO WE DO WHEN SOMEBODY 7020 05:58:36,165 --> 05:58:37,900 MISUSES TISSUES AND SAMPLE. 7021 05:58:37,900 --> 05:58:43,439 IS THERE A WAY TO ENSURE WHO 7022 05:58:43,439 --> 05:58:46,208 MISUSES ENVIRONMENTAL OR HUMAN 7023 05:58:46,208 --> 05:58:48,344 SAMPLE IS THERE A WAY TO ENSURE 7024 05:58:48,344 --> 05:58:52,047 THAT NIH NO LONGER FUNDS THEM OR 7025 05:58:52,047 --> 05:58:54,016 HAS THEM GO THROUGH A PROCESS 7026 05:58:54,016 --> 05:58:55,918 BEFORE THEY CAN BE FUNDED BEFORE 7027 05:58:55,918 --> 05:59:01,123 IT'S TRAINING OR TRIBAL 7028 05:59:01,123 --> 05:59:11,634 CONSULTATION OR SOMETHING WE 7029 05:59:18,540 --> 05:59:18,841 COULD DO. 7030 05:59:18,841 --> 05:59:21,210 >> FIRST AND FOREMOST IS TO BE 7031 05:59:21,210 --> 05:59:22,912 TRANSPARENT AND WORK WITH THE 7032 05:59:22,912 --> 05:59:24,980 TRIBES TO LET THEM KNOW WHEN 7033 05:59:24,980 --> 05:59:25,915 IT'S HAPPENED. 7034 05:59:25,915 --> 05:59:27,016 APOLOGIES IT'S NOT OKAY. 7035 05:59:27,016 --> 05:59:32,955 ACTION HAS TO BE FOLLOWED BY AN 7036 05:59:32,955 --> 05:59:33,489 ACTION. 7037 05:59:33,489 --> 05:59:36,458 USUALLY THERE'S DEPENDING ON 7038 05:59:36,458 --> 05:59:40,996 TRIBAL INPUT USUALLY IT'S MIG 7039 05:59:40,996 --> 05:59:46,135 FROM FURTHER TRAINING OR 7040 05:59:46,135 --> 05:59:55,945 DEVELOPMENT OR FURTHER SPEAK 7041 05:59:55,945 --> 06:00:00,082 WITH THE TRIBES AND LETTING THEM 7042 06:00:00,082 --> 06:00:03,652 KNOW TOE MAKE DECISIONS IF THE 7043 06:00:03,652 --> 06:00:07,256 TRIBES WANT THEIR SAMPLES BACK. 7044 06:00:07,256 --> 06:00:10,526 WE'VE TAKEN A DIRECT APPROACH 7045 06:00:10,526 --> 06:00:12,628 WITH THE SUPPORT OF THE NIH 7046 06:00:12,628 --> 06:00:23,172 DIRECTOR IN CERTAIN SITUATIONS. 7047 06:00:26,442 --> 06:00:28,344 >> GOING BACK TO THE HISTORY OF 7048 06:00:28,344 --> 06:00:28,978 PUBLICATIONS WE TALKED A LITTLE 7049 06:00:28,978 --> 06:00:30,612 BIT ABOUT. 7050 06:00:30,612 --> 06:00:34,083 I KNOW THAT IN MY EXPERIENCE 7051 06:00:34,083 --> 06:00:36,919 THAT HARMS THAT ARE INFLICTED 7052 06:00:36,919 --> 06:00:39,922 UPON TRIBAL COMMUNITIES IS AT 7053 06:00:39,922 --> 06:00:40,389 THE PUBLICATION STAGE. 7054 06:00:40,389 --> 06:00:42,658 SO THAT'S WHEN THE DATA IS 7055 06:00:42,658 --> 06:00:45,561 PRESENTED, PUBLISHED IS WHEN THE 7056 06:00:45,561 --> 06:00:47,062 HARM OCCURS. 7057 06:00:47,062 --> 06:00:49,465 AND BECOME AWARE. 7058 06:00:49,465 --> 06:00:52,301 AT CHICKASAW NATION WE HAVE A 7059 06:00:52,301 --> 06:00:57,139 POLICY TO REVIEW AND APPROVAL OF 7060 06:00:57,139 --> 06:00:57,973 THE PUBLICATION OF PRESENTATION 7061 06:00:57,973 --> 06:00:59,041 BEFORE IT'S MADE PUBLIC. 7062 06:00:59,041 --> 06:01:05,214 I KNOW OTHER TRIBES HAVE THAT 7063 06:01:05,214 --> 06:01:08,717 IRB REVIEW OF WHAT THE MECHANISM 7064 06:01:08,717 --> 06:01:09,651 MIGHT BE. 7065 06:01:09,651 --> 06:01:14,089 I THINK IF I'M NOT MISTAKEN 7066 06:01:14,089 --> 06:01:18,060 THERE'S AN NIH SUPPLEMENT THAT 7067 06:01:18,060 --> 06:01:19,361 THERE'S MENTION ABOUT 7068 06:01:19,361 --> 06:01:20,996 RESEARCHERS NEED TO BE AWARE AND 7069 06:01:20,996 --> 06:01:22,564 SOMETHING THEY MAY NEED TO DEAL 7070 06:01:22,564 --> 06:01:24,466 WITH BEFORE THE RESEARCH STARTS 7071 06:01:24,466 --> 06:01:27,369 BUT I'M NOT SURE THAT'S ENOUGH. 7072 06:01:27,369 --> 06:01:29,204 JUST TO BE AWARE. 7073 06:01:29,204 --> 06:01:31,774 PERHAPS IT NEEDS TO BE A 7074 06:01:31,774 --> 06:01:32,174 REQUIREMENT. 7075 06:01:32,174 --> 06:01:34,810 BEFORE YOU IN TER INTO THIS 7076 06:01:34,810 --> 06:01:37,413 PROJECT WITH THE TRIBE THAT 7077 06:01:37,413 --> 06:01:41,050 THOSE MANUSCRIPTS, PRESENTATIONS 7078 06:01:41,050 --> 06:01:43,552 WILL BE REVIEWED AND WE GET 7079 06:01:43,552 --> 06:01:44,420 EDITING RIGHTS AS WELL. 7080 06:01:44,420 --> 06:01:51,360 IT'S NOT ENOUGH TO REVIEW IT BUT 7081 06:01:51,360 --> 06:01:51,960 MAKE CHANGES IF THERE'S 7082 06:01:51,960 --> 06:01:53,862 SOMETHING YOU DISAGREE WITH IN 7083 06:01:53,862 --> 06:01:55,164 OUR MANAGEMENT POLICIES. 7084 06:01:55,164 --> 06:02:00,436 THAT'S A DEAL BREAK SOMETIMES. 7085 06:02:00,436 --> 06:02:03,806 AND TO ME HAVING THAT AS A 7086 06:02:03,806 --> 06:02:05,574 POSSIBILITY OR NEED ABBE AWARE 7087 06:02:05,574 --> 06:02:10,446 IS PERHAPS NOT STRONG ENOUGH AND 7088 06:02:10,446 --> 06:02:11,780 SOMETHING THAT NEED TO BE MADE 7089 06:02:11,780 --> 06:02:13,148 MORE OFFICIAL IN THE NIH 7090 06:02:13,148 --> 06:02:13,415 GUIDANCE. 7091 06:02:13,415 --> 06:02:18,587 >> THAT'S HELPFUL. 7092 06:02:18,587 --> 06:02:23,192 WE AGREE WE HAVE IT'S NOT ENOUGH 7093 06:02:23,192 --> 06:02:25,727 TO GO TO DISPOSAL BUT 7094 06:02:25,727 --> 06:02:27,229 DISSEMINATION IS WHERE THE HARMS 7095 06:02:27,229 --> 06:02:27,863 COME TO LIGHT. 7096 06:02:27,863 --> 06:02:31,400 IT WOULD BE CRITICAL TO HAVE 7097 06:02:31,400 --> 06:02:32,000 MORE TEETH IN THAT POLICY FOR 7098 06:02:32,000 --> 06:02:36,438 SURE. 7099 06:02:36,438 --> 06:02:43,412 >> I WANTED TO SHARE AN EXAMPLE 7100 06:02:43,412 --> 06:02:47,850 OF THE DATA DESTRUCTION PROCESS. 7101 06:02:47,850 --> 06:02:50,452 I WAS AN INVESTIGATOR WITH 7102 06:02:50,452 --> 06:02:52,354 BONNIE DURAN ON A NATIONAL 7103 06:02:52,354 --> 06:02:52,588 PROJECT. 7104 06:02:52,588 --> 06:02:54,957 IN THE DATA SHARING AND 7105 06:02:54,957 --> 06:02:57,059 OWNERSHIP AGREEMENT WE HAD 7106 06:02:57,059 --> 06:03:00,395 PROVISIONS THAT INCLUDED THE 7107 06:03:00,395 --> 06:03:01,930 PROCESS FOR DESTRUCTION OF THE 7108 06:03:01,930 --> 06:03:02,164 DATA. 7109 06:03:02,164 --> 06:03:03,465 IN WINDSHIELD WE HAVE TO RETAIN 7110 06:03:03,465 --> 06:03:05,000 THE DATA FOR SEVEN YEARS AFTER 7111 06:03:05,000 --> 06:03:08,137 THE END OF THE PROJECT PERIOD. 7112 06:03:08,137 --> 06:03:11,573 SO WE DE-IDENTIFIED IT AT THE 7113 06:03:11,573 --> 06:03:14,143 INDIVIDUAL AND TRIBAL COLLEGE 7114 06:03:14,143 --> 06:03:15,410 LEVEL AND ALSO THE TRIBAL LEVEL. 7115 06:03:15,410 --> 06:03:19,014 WE MAINTAINED IT FOR THE SEVEN 7116 06:03:19,014 --> 06:03:21,283 YEARS AND ABOUT EIGHT MONTHS 7117 06:03:21,283 --> 06:03:24,119 BEFORE THE END OF THAT 7118 06:03:24,119 --> 06:03:26,121 SEVEN-YEAR PERIOD ANOTHER 7119 06:03:26,121 --> 06:03:28,290 CO-INVESTIGATOR IN THE PROJECT 7120 06:03:28,290 --> 06:03:31,193 STARTED THE PROCESS OF GOING 7121 06:03:31,193 --> 06:03:34,296 BACK TO A CATALOG OF THE DATA WE 7122 06:03:34,296 --> 06:03:44,740 HAD AND SYSTEMATICALLY IN 7123 06:03:46,141 --> 06:03:48,010 POSSESSION WE LOOKED ATE THIS 7124 06:03:48,010 --> 06:03:52,781 DATA AND TURNED IT BACK TO THE 7125 06:03:52,781 --> 06:03:54,650 TRIBAL COLLEGES. 7126 06:03:54,650 --> 06:03:58,020 WE AND WE START DELETING THE 7127 06:03:58,020 --> 06:04:00,155 FILES WE HAD AND DESTROYING ALL 7128 06:04:00,155 --> 06:04:03,258 THE HARD COPY PAPER FILES WE HAD 7129 06:04:03,258 --> 06:04:04,126 AS WELL. 7130 06:04:04,126 --> 06:04:05,794 SO THE POINT IS THE AGREEMENT 7131 06:04:05,794 --> 06:04:08,730 THAT WE HAD IN PLACE IS REALLY 7132 06:04:08,730 --> 06:04:10,098 HELPFUL BECAUSE IT SET FORWARD 7133 06:04:10,098 --> 06:04:12,467 THE PROCESS OF HOW WE'D GO ABOUT 7134 06:04:12,467 --> 06:04:22,578 THAT. 7135 06:04:24,479 --> 06:04:26,648 THANK YOU FOR THAT EXAMPLE. 7136 06:04:26,648 --> 06:04:30,485 >> TO ADD TO BOBBY'S COMMENT, 7137 06:04:30,485 --> 06:04:32,087 I'M NOT THAT CONFIDENT UP IRBs 7138 06:04:32,087 --> 06:04:34,289 BUT PERHAPS AN IRB COULD BE A 7139 06:04:34,289 --> 06:04:37,326 THIRD-PARTY REVIEWER OF THAT 7140 06:04:37,326 --> 06:04:40,462 PARTICULAR POLICY BECAUSE IN 7141 06:04:40,462 --> 06:04:43,432 CHICKASAW THEY DO THEIR OWN 7142 06:04:43,432 --> 06:04:44,900 DOCUMENT REPRESENTATION REVIEW 7143 06:04:44,900 --> 06:04:47,803 BUT NOT ALL TRIBES HAVE THAT BUT 7144 06:04:47,803 --> 06:04:51,406 ONE STUDY THEY SNUCK INTO THE 7145 06:04:51,406 --> 06:04:52,808 FINE PRINT IS THE TRIBE DOESN'T 7146 06:04:52,808 --> 06:04:55,577 RESPOND IN 60 OR 90 DAYS THEY GO 7147 06:04:55,577 --> 06:04:58,880 AHEAD AND PUBLISH ANYWAY AND TO 7148 06:04:58,880 --> 06:05:01,283 ME THAT'S AN ETHICAL VIOLATION. 7149 06:05:01,283 --> 06:05:03,385 IF THE TRIBE'S IN THE PAYING 7150 06:05:03,385 --> 06:05:04,886 ATTENTION, SOMEBODY SHOULD. 7151 06:05:04,886 --> 06:05:07,623 >> NO OPT-OUT PROCESS. 7152 06:05:07,623 --> 06:05:18,033 >> NO PASSIVE APPROVAL. 7153 06:05:21,937 --> 06:05:32,414 MAYBE WHAT HAPPENS WITH MISUSE. 7154 06:05:40,622 --> 06:05:46,895 AND WE LOOK AT EQUITY HERE AND 7155 06:05:46,895 --> 06:05:48,830 ANYTHING THAT COMES FORWARD WITH 7156 06:05:48,830 --> 06:05:54,403 RESPECT TO MISCONDUCT OR THERE'S 7157 06:05:54,403 --> 06:05:55,904 A REVIEW PROCESS HERE FOR THEM 7158 06:05:55,904 --> 06:06:02,010 BUT MOST PEOPLE AREN'T AWARE OF 7159 06:06:02,010 --> 06:06:12,120 THAT. 7160 06:06:24,800 --> 06:06:25,133 [OFF-MIC] 7161 06:06:25,133 --> 06:06:27,936 >> WE GET IT. 7162 06:06:27,936 --> 06:06:38,213 BASICALLY, YEAH. 7163 06:07:01,136 --> 06:07:03,105 >> I DIDN'T KNOW AS A 7164 06:07:03,105 --> 06:07:07,008 RESEARCHER -- I MEAN I KIND OF 7165 06:07:07,008 --> 06:07:10,579 HEARD BUT I DIDN'T KNOW AT THE 7166 06:07:10,579 --> 06:07:12,214 INSTITUTES THIS WAS SUCH A 7167 06:07:12,214 --> 06:07:14,216 MASSIVE PLACE, HONESTLY BUT 7168 06:07:14,216 --> 06:07:16,818 THERE ARE FORMAL LEGALISTIC 7169 06:07:16,818 --> 06:07:17,786 THINGS IN PLACE. 7170 06:07:17,786 --> 06:07:20,455 SOME WILL NOT ADDRESS SOME 7171 06:07:20,455 --> 06:07:22,224 THINGS YOU'RE WANTING TO ADDRESS 7172 06:07:22,224 --> 06:07:28,463 THAT'S WHY A POLICY IS SO 7173 06:07:28,463 --> 06:07:32,667 IMPORTANT AND A BASELINE OF WHAT 7174 06:07:32,667 --> 06:07:34,703 SHOULD BE HAPPENING. 7175 06:07:34,703 --> 06:07:45,247 AND LOOK AT THE CONSEQUENCES AND 7176 06:07:47,382 --> 06:07:50,085 AND JUST KNOW THAT RIGHT NOW 7177 06:07:50,085 --> 06:07:55,190 WHEN WE GET CALLED INTO A 7178 06:07:55,190 --> 06:08:00,462 SITUATION ASKED TO WEIGH IN WE 7179 06:08:00,462 --> 06:08:03,532 LET THE TRIBAL ADVISORY 7180 06:08:03,532 --> 06:08:04,733 COMMITTEE KNOW THERE'S AN 7181 06:08:04,733 --> 06:08:07,402 INVESTIGATION IS ONGOING AND 7182 06:08:07,402 --> 06:08:13,442 GIVE A BRIEFING AND GIVE A STACK 7183 06:08:13,442 --> 06:08:18,780 OF DEBRIEFING AND UP THE COMMAND 7184 06:08:18,780 --> 06:08:22,017 AND A CONSULTATION WITH THE 7185 06:08:22,017 --> 06:08:24,252 DIRECTOR OF INTEGRITY AND UP THE 7186 06:08:24,252 --> 06:08:26,321 CHAIN IN SOME SITUATIONS. 7187 06:08:26,321 --> 06:08:28,290 IT DEPENDS ON THE SITUATION AND 7188 06:08:28,290 --> 06:08:30,792 SOME ASPECTS OF LEGALITY. 7189 06:08:30,792 --> 06:08:33,595 IN ALL CASES IF IT'S INVOLVING 7190 06:08:33,595 --> 06:08:35,464 TRIBES ONE OF MY FIRST GO TO IS 7191 06:08:35,464 --> 06:08:38,967 WE LET THE TRIBES KNOW AND TALK 7192 06:08:38,967 --> 06:08:42,204 TO THE TRIBES DIRECTLY. 7193 06:08:42,204 --> 06:08:45,674 I WANT FULL TRANSPARENCY THAT'S 7194 06:08:45,674 --> 06:08:48,443 THE ONLY WAY TO BUILD SOME TRUST 7195 06:08:48,443 --> 06:08:51,179 INTO THE PROCESS. 7196 06:08:51,179 --> 06:08:54,616 >> KARINA, I WONDER IF YOU'RE 7197 06:08:54,616 --> 06:09:00,121 ALSO THINKING ABOUT BECAUSE 7198 06:09:00,121 --> 06:09:02,657 JOURNALS ALSO AND THERE'S A MORE 7199 06:09:02,657 --> 06:09:05,227 ACTIVE ROLE THAT JOURNALS ARE 7200 06:09:05,227 --> 06:09:10,232 PLAYING IN TERMS OF FALSE 7201 06:09:10,232 --> 06:09:20,775 FICTION OF DATA BUT ALSO IT'S A 7202 06:09:21,743 --> 06:09:25,146 REAL BLACK MARK ON THE AUTHORS 7203 06:09:25,146 --> 06:09:27,516 OF THE PAPER FOR MISINTERPRETING 7204 06:09:27,516 --> 06:09:31,586 DATA AND I THINK IT'S A NEW 7205 06:09:31,586 --> 06:09:31,887 FIELD. 7206 06:09:31,887 --> 06:09:34,956 I'M NOT AWARE OF IT BUT IN MY 7207 06:09:34,956 --> 06:09:38,493 FIELD I'VE BEEN IN LIKE PEOPLE 7208 06:09:38,493 --> 06:09:41,696 MAKE UP DATA OR GRAPHS AND 7209 06:09:41,696 --> 06:09:44,466 THINGS LIKE THAT AND IT'S A 7210 06:09:44,466 --> 06:09:49,404 PROBLEM AND IF YOU USE NIH DATA 7211 06:09:49,404 --> 06:09:50,539 YOU'RE POSTED. 7212 06:09:50,539 --> 06:09:52,073 IT WOULD BE A COOL THING TO HAVE 7213 06:09:52,073 --> 06:09:55,043 A POLICY IN PLACE THAT WOULD 7214 06:09:55,043 --> 06:09:57,178 CALL OUT THAT THERE WAS AN 7215 06:09:57,178 --> 06:10:01,216 AGREEMENT WITH A TRIBE OR 7216 06:10:01,216 --> 06:10:03,552 COMMUNITY OF INDIGENOUS ANCESTRY 7217 06:10:03,552 --> 06:10:09,591 AND THESE INDIVIDUALS FAILED TO 7218 06:10:09,591 --> 06:10:12,460 MEET THAT EXPECTATION. 7219 06:10:12,460 --> 06:10:14,529 AND NOWADAYS YOU CAN GET 7220 06:10:14,529 --> 06:10:17,065 ANYTHING OUT AND FOR VAURS 7221 06:10:17,065 --> 06:10:19,334 PEOPLE TO KNOW SO IN A WAY -- 7222 06:10:19,334 --> 06:10:22,704 VARIOUS PEOPLE KNOW THERE'S THE 7223 06:10:22,704 --> 06:10:26,942 THING WE CAN DO GOOD AND BAD 7224 06:10:26,942 --> 06:10:28,343 SOCIAL MEDIA CAN BE BAD AS WELL 7225 06:10:28,343 --> 06:10:31,313 BUT YOU DON'T NECESSARILY NEED 7226 06:10:31,313 --> 06:10:33,081 TO HAVE -- AND IT WOULD TELL 7227 06:10:33,081 --> 06:10:35,650 OTHER PEOPLE THINKING OF WORKING 7228 06:10:35,650 --> 06:10:41,489 WITH THIS GROUP OR WHATEVER T 7229 06:10:41,489 --> 06:10:44,459 THAT, YEAH. 7230 06:10:44,459 --> 06:10:48,597 >> AND THAT'S WHAT I HAD IN MIND 7231 06:10:48,597 --> 06:10:50,332 NOT SO MUCH SOCIAL MEDIA OR 7232 06:10:50,332 --> 06:10:51,967 ANYTHING BUT SOME ACCESSIBLE 7233 06:10:51,967 --> 06:10:54,369 MECHANISM SO COMMUNITY MEMBERS 7234 06:10:54,369 --> 06:10:56,104 CAN SAY I THINK OF IT LIKE WHEN 7235 06:10:56,104 --> 06:10:58,006 YOU DO A PHONE CALL TO CUSTOMER 7236 06:10:58,006 --> 06:11:00,342 SERVICE AND THEY SAY IN THIS 7237 06:11:00,342 --> 06:11:02,344 CALL WE'LL GIVE YOU A SURVEY AND 7238 06:11:02,344 --> 06:11:03,945 LET ME KNOW HOW WELL I'VE SERVED 7239 06:11:03,945 --> 06:11:07,415 YOU SO COMMUNITY MEMBERS CAN SAY 7240 06:11:07,415 --> 06:11:10,285 THIS PERSON CAME AND PROMISED X, 7241 06:11:10,285 --> 06:11:16,157 Y AND Z AND DIDN'T DELIVER OR 7242 06:11:16,157 --> 06:11:16,524 WHATEVER. 7243 06:11:16,524 --> 06:11:18,827 AND I FEEL LIKE THAT LEVEL OF 7244 06:11:18,827 --> 06:11:21,496 ACCOUNTABILITY IS IMPORTANT TOO. 7245 06:11:21,496 --> 06:11:23,732 I DON'T KNOW THE CHECKS ON THAT. 7246 06:11:23,732 --> 06:11:26,034 >> I SUPPOSE WHERE I WISH TO GO 7247 06:11:26,034 --> 06:11:30,071 WITH THAT IS TO MENTION WITHIN 7248 06:11:30,071 --> 06:11:33,274 OUR FEDERAL GRANT PROCESSES ANY 7249 06:11:33,274 --> 06:11:34,643 TYPE OF PROCUREMENT GOES THROUGH 7250 06:11:34,643 --> 06:11:36,444 OUR SYSTEM FOR AWARD MANAGEMENT. 7251 06:11:36,444 --> 06:11:40,448 TO ME IT'S AMAZING THAT IF I 7252 06:11:40,448 --> 06:11:42,717 HAVE A VENDOR I'M TRYING TO USE 7253 06:11:42,717 --> 06:11:45,654 TO PURCHASE PIPETTES OR PENCILS 7254 06:11:45,654 --> 06:11:48,390 I NEED TO HAVE MY PROCUREMENT 7255 06:11:48,390 --> 06:11:50,458 OFFICE CHECK WITH SAM TO SEE IF 7256 06:11:50,458 --> 06:11:54,529 THEY'RE AN APPROPRIATE VENDOR 7257 06:11:54,529 --> 06:11:56,364 BUT THERE ISN'T SOMETHING 7258 06:11:56,364 --> 06:11:57,465 SIMILAR TO SEE IF AN 7259 06:11:57,465 --> 06:11:58,500 INVESTIGATOR IS APPROPRIATE FOR 7260 06:11:58,500 --> 06:12:00,335 DOING THE WORK INSTEAD THEY'RE 7261 06:12:00,335 --> 06:12:03,104 VETTED OR WITH AN AGENCY. 7262 06:12:03,104 --> 06:12:07,409 MY SUGGESTION IS IF WE HAVE SAM 7263 06:12:07,409 --> 06:12:12,047 FOR PROCUREMENT OF ITEMS WOULD 7264 06:12:12,047 --> 06:12:13,381 WE HAVE A CONSIDERATION FOR 7265 06:12:13,381 --> 06:12:17,686 INVESTIGATORS NOT JUST IN TRIBAL 7266 06:12:17,686 --> 06:12:19,421 COMMUNITIES FOR ALL HUMAN 7267 06:12:19,421 --> 06:12:23,425 SUBJECTS WORK AND THOSE THINGS 7268 06:12:23,425 --> 06:12:25,260 ARE TECHNICALLY NOT HUMAN 7269 06:12:25,260 --> 06:12:28,463 SUBJECTS BUT COMING FROM HUMANS 7270 06:12:28,463 --> 06:12:31,566 AND LOOK AT AREAS FOR DEBARMENT 7271 06:12:31,566 --> 06:12:34,335 AND SUSPENSION AND CONSIDERED ON 7272 06:12:34,335 --> 06:12:36,438 AN ANNUAL BASIS AND IF WE CAN DO 7273 06:12:36,438 --> 06:12:40,341 IT AROUND PENCILS AND SIGNS AND 7274 06:12:40,341 --> 06:12:43,945 WHO GETS TO SELL NAME BADGES IT 7275 06:12:43,945 --> 06:12:45,714 SEEMS WE SHOULD BE ABLE TO DO 7276 06:12:45,714 --> 06:12:48,450 THIS FOR SOMETHING OF MORE 7277 06:12:48,450 --> 06:12:54,689 MEANING. 7278 06:12:54,689 --> 06:12:57,992 >> I DON'T KNOW IF THIS WILL BE 7279 06:12:57,992 --> 06:13:05,300 EARTH SHATTERING AND MORE ABOUT 7280 06:13:05,300 --> 06:13:05,533 SAMPLES. 7281 06:13:05,533 --> 06:13:08,837 ONE OF THE SITES FOR THE ABCD 7282 06:13:08,837 --> 06:13:11,539 PROJECT AND THERE'S AN EXTENSION 7283 06:13:11,539 --> 06:13:17,412 IN RESPONSE TO COLLECTING 7284 06:13:17,412 --> 06:13:21,249 ADDITIONAL BLOOD SAMPLES VIA A 7285 06:13:21,249 --> 06:13:23,318 CLIP AND THE CHEROKEE NATION AND 7286 06:13:23,318 --> 06:13:27,055 IRB AND WORKED TO DEVELOP A 7287 06:13:27,055 --> 06:13:29,724 PROCESS FOR HOW DO WE RE-CONSENT 7288 06:13:29,724 --> 06:13:32,927 PEOPLE TO GATHER THIS DATA AND 7289 06:13:32,927 --> 06:13:35,063 DO WITH THE SAMPLES WHEN WE'RE 7290 06:13:35,063 --> 06:13:37,432 DONE AND A LOT OF BACK AND FORTH 7291 06:13:37,432 --> 06:13:38,399 AND THEY IDENTIFIED SPECIFIC 7292 06:13:38,399 --> 06:13:41,436 COMMUNITY MEMBERS TO HELP INFORM 7293 06:13:41,436 --> 06:13:44,405 THAT PROCESS AND EVENTUALLY 7294 06:13:44,405 --> 06:13:46,074 LANDED ON WITHIN THE PLAIN 7295 06:13:46,074 --> 06:13:49,310 LANGUAGE OF THE CONSENT OFFERING 7296 06:13:49,310 --> 06:13:50,779 A SPECIFIC AGREEMENT TO EVERY 7297 06:13:50,779 --> 06:13:51,846 PARTICIPANT THAT AGREED SAYING 7298 06:13:51,846 --> 06:13:54,015 THERE WAS NOT AN OPT-OUT 7299 06:13:54,015 --> 06:13:54,282 DECISION. 7300 06:13:54,282 --> 06:13:55,550 THEY HAD TO DECIDE DO YOU WANT 7301 06:13:55,550 --> 06:13:58,753 US TO DESTROY THIS SAMPLE AS WE 7302 06:13:58,753 --> 06:14:01,289 WOULD WITH TYPICAL BIO SAMPLES 7303 06:14:01,289 --> 06:14:04,559 FROM JUST OUR LAB-BASED 7304 06:14:04,559 --> 06:14:04,926 PROTOCOL? 7305 06:14:04,926 --> 06:14:06,461 DO YOU WANT US TO SEND THIS BACK 7306 06:14:06,461 --> 06:14:08,363 FOR CHEROKEE NATION FOR THEIR 7307 06:14:08,363 --> 06:14:10,532 IDENTIFIED CULTURAL PROTOCOL FOR 7308 06:14:10,532 --> 06:14:13,434 DISRUPTION OR RETURN THE SAMPLE 7309 06:14:13,434 --> 06:14:15,370 DIRECTLY TO YOU? 7310 06:14:15,370 --> 06:14:16,838 SO EVERY PARTICIPANT SIGNED THAT 7311 06:14:16,838 --> 06:14:20,441 AND WE AS AN INSTITUTE PUCKED UP 7312 06:14:20,441 --> 06:14:26,581 THE -- PICKED UP THE FUNDING FOR 7313 06:14:26,581 --> 06:14:28,249 THE MEETINGS AND PROCESS TO HAVE 7314 06:14:28,249 --> 06:14:28,983 THE FLEXIBILITY. 7315 06:14:28,983 --> 06:14:32,353 IN ADDITION TO ALL THESE PANELS 7316 06:14:32,353 --> 06:14:34,823 EACH DECISION POINT IS WE NEED 7317 06:14:34,823 --> 06:14:36,157 MORE TIME AND MONEY. 7318 06:14:36,157 --> 06:14:37,959 JUST TO BE DIRECT ABOUT SOME OF 7319 06:14:37,959 --> 06:14:43,231 THE RESOURCES THAT MIGHT NEED TO 7320 06:14:43,231 --> 06:14:44,098 BE AVAILABLE BUT THAT ALSO 7321 06:14:44,098 --> 06:14:45,800 BRINGS UP A QUESTION FOR WHEN 7322 06:14:45,800 --> 06:14:47,836 THE POLICY IS IMPLEMENTED, HOW 7323 06:14:47,836 --> 06:14:52,440 WILL THIS AFFECT SOME ONGOING 7324 06:14:52,440 --> 06:14:54,275 LARGER STUDIES THAT INVOLVE 7325 06:14:54,275 --> 06:14:56,444 NATIVE COMMUNITIES AND THEIR 7326 06:14:56,444 --> 06:14:57,879 SAMPLES BECAUSE I KNOW EARLIER 7327 06:14:57,879 --> 06:15:01,749 IN THE OPENING YOU DESCRIBED 7328 06:15:01,749 --> 06:15:03,918 VARIOUS DEFINITIONS VERSUS RULE 7329 06:15:03,918 --> 06:15:05,620 AND NON-RESERVATION. 7330 06:15:05,620 --> 06:15:07,222 SOME LARGER STUDIES ONGOING 7331 06:15:07,222 --> 06:15:11,593 WHETHER ALL OF US, ABCD, HBD AND 7332 06:15:11,593 --> 06:15:14,996 SO ON, HAD A MIXTURE AND I'M 7333 06:15:14,996 --> 06:15:19,000 CURIOUS WILL THE POLICIES BE 7334 06:15:19,000 --> 06:15:20,468 RETROACTIVE OR CLINICAL TRIALS 7335 06:15:20,468 --> 06:15:21,336 EXPECTED TO UPLOAD DATA TO 7336 06:15:21,336 --> 06:15:31,713 THINGS OF THAT NATURE. 7337 06:15:32,146 --> 06:15:32,814 >> SORRY. 7338 06:15:32,814 --> 06:15:35,516 >> I JUST WANTED TO JUMP BACK 7339 06:15:35,516 --> 06:15:40,788 FOR A SECOND ON THE QUESTION ON 7340 06:15:40,788 --> 06:15:42,857 THE RESEARCH THERE ARE THREE 7341 06:15:42,857 --> 06:15:45,693 TYPES THAT NIH PRIMARILY FOCUSES 7342 06:15:45,693 --> 06:15:47,462 ON THOUGH I THINK THERE'S OTHER 7343 06:15:47,462 --> 06:15:51,900 KINDS OF THINGS IN THE BALLPARK 7344 06:15:51,900 --> 06:15:52,734 BUT DIFFERENT. 7345 06:15:52,734 --> 06:15:55,570 THERE'S FABRICATING, FALSIFYING 7346 06:15:55,570 --> 06:16:00,909 OR PLAGIARIZING IN PERFORMING OR 7347 06:16:00,909 --> 06:16:02,243 REPORTING RESEARCH RESULTS IS 7348 06:16:02,243 --> 06:16:04,078 THE OFFICE OF ORI. 7349 06:16:04,078 --> 06:16:06,948 IT DOESN'T ADDRESS FABRICATION 7350 06:16:06,948 --> 06:16:11,753 OF PERSONAL IDENTITY OR DEAL 7351 06:16:11,753 --> 06:16:13,521 WITH -- I'M TRYING TO THINK OF 7352 06:16:13,521 --> 06:16:15,957 AN EXAMPLE NOT GIVING DATA BACK 7353 06:16:15,957 --> 06:16:20,962 WHEN DATA NOT PROPERLY 7354 06:16:20,962 --> 06:16:21,229 DISPOSING. 7355 06:16:21,229 --> 06:16:21,896 THAT MAY FALL UNDER SOMETHING 7356 06:16:21,896 --> 06:16:23,031 ELSE BUT YOU RAISED AN IMPORTANT 7357 06:16:23,031 --> 06:16:24,666 POINT TO THINK WHAT IS IN PLACE 7358 06:16:24,666 --> 06:16:29,504 RIGHT NOW AND HOW DOES THIS IDS 7359 06:16:29,504 --> 06:16:33,308 POLICY CONNECT OR NOT DISCONNECT 7360 06:16:33,308 --> 06:16:34,609 WITH POTENTIAL CONSEQUENCES AND 7361 06:16:34,609 --> 06:16:36,878 ACTIONS AND WHAT'S THAT LOOK 7362 06:16:36,878 --> 06:16:37,145 LIKE? 7363 06:16:37,145 --> 06:16:40,949 THAT'S SOMETHING WE'LL FOLLOW UP 7364 06:16:40,949 --> 06:16:41,416 ON. 7365 06:16:41,416 --> 06:16:45,987 LOOK AT NIH OR ORI IF 7366 06:16:45,987 --> 06:16:47,155 INTERESTED. 7367 06:16:47,155 --> 06:16:50,058 >> TO EVAN'S POINT IN THINKING 7368 06:16:50,058 --> 06:16:51,993 ABOUT THE POLICY WOULD PRIMARILY 7369 06:16:51,993 --> 06:16:58,933 APPLY TO NEW RESEARCH PROPOSALS 7370 06:16:58,933 --> 06:17:01,469 OR RESEARCH INFERENCE TO AN 7371 06:17:01,469 --> 06:17:02,270 INDIGENOUS POPULATION OR TRIBE 7372 06:17:02,270 --> 06:17:04,772 OR DIRECTLY WORKING WITH THEM. 7373 06:17:04,772 --> 06:17:07,442 THAT SAID, THERE ARE MANY OTHER 7374 06:17:07,442 --> 06:17:12,447 THINGS GOING ON AT NIH AND HHS 7375 06:17:12,447 --> 06:17:13,581 LOOKING RETROSPECTIVELY. 7376 06:17:13,581 --> 06:17:19,220 SO WE'VE BEEN HAVING 7377 06:17:19,220 --> 06:17:20,855 CONVERSATIONS WITH OUR TRIBAL 7378 06:17:20,855 --> 06:17:21,756 COMMITTEE ON BIO SPECIMEN RETURN 7379 06:17:21,756 --> 06:17:24,459 AND WHAT THAT LOOKS LIKE AND 7380 06:17:24,459 --> 06:17:26,294 WE'RE STARTING THAT CONVERSATION 7381 06:17:26,294 --> 06:17:28,896 ON THAT FIRST WHETHER IT GOES 7382 06:17:28,896 --> 06:17:29,330 ANYWHERE ELSE. 7383 06:17:29,330 --> 06:17:31,432 THERE'S ALSO ONGOING 7384 06:17:31,432 --> 06:17:34,602 CONVERSATIONS AND UPCOMING 7385 06:17:34,602 --> 06:17:36,337 TRIBAL CONSULTATION ON OCTOBER 1 7386 06:17:36,337 --> 06:17:38,873 WHERE HHS IS PROPOSING TRIBAL 7387 06:17:38,873 --> 06:17:41,409 DATA SHARING POLICY THAT WOULD 7388 06:17:41,409 --> 06:17:46,381 APPLY TO ALL AGENCIES UNDER HHS 7389 06:17:46,381 --> 06:17:48,449 THAT HOLD AGENCIES ACCOUNTABLE 7390 06:17:48,449 --> 06:17:51,853 TO PROVIDING THE SAME LEVEL OF 7391 06:17:51,853 --> 06:17:56,924 ACCESS TO DATA TO TRIBES THAT 7392 06:17:56,924 --> 06:17:58,760 THEY WOULD A STATE FOR EXAMPLE. 7393 06:17:58,760 --> 06:18:01,462 THAT'S ONE WAY THAT WILL 7394 06:18:01,462 --> 06:18:04,265 DRAMATICALLY SHAKE UP SOME OF 7395 06:18:04,265 --> 06:18:07,735 THIS ACCOUNTABILITY ON DATA 7396 06:18:07,735 --> 06:18:08,436 RETROSPECTIVELY AND FRANKLY 7397 06:18:08,436 --> 06:18:10,838 THERE'S WORK TO DO ON THE NIH 7398 06:18:10,838 --> 06:18:11,239 SIDE. 7399 06:18:11,239 --> 06:18:13,841 WE ALLUDED TO UNDERSTANDING 7400 06:18:13,841 --> 06:18:16,444 WHERE THE DATA SITS IN BIO 7401 06:18:16,444 --> 06:18:18,713 REPOSITORIES FUNDED BY NIH RIGHT 7402 06:18:18,713 --> 06:18:19,747 NOW. 7403 06:18:19,747 --> 06:18:22,150 WE DON'T HAVE A GRASP ON THAT 7404 06:18:22,150 --> 06:18:23,184 AND WILL HAVE A CHALLENGE IN 7405 06:18:23,184 --> 06:18:24,986 UNDERSTANDING WHERE THE DATA IS 7406 06:18:24,986 --> 06:18:26,454 AND TO BE ACCOUNTABLE SO IF 7407 06:18:26,454 --> 06:18:29,690 ANYONE IS CONTACTED BY A TRIBE 7408 06:18:29,690 --> 06:18:31,125 WE CAN HELP GUIDE THEM TO THE 7409 06:18:31,125 --> 06:18:31,759 RIGHT PLACE. 7410 06:18:31,759 --> 06:18:33,928 RIGHT NOW THE WAY THAT'S BEING 7411 06:18:33,928 --> 06:18:37,065 THOUGHT THROUGH AND THIS IS ALL 7412 06:18:37,065 --> 06:18:38,766 PRELIMINARY IS THAT WE WOULD AT 7413 06:18:38,766 --> 06:18:41,135 LEAST DIRECT TRIBES TO THE SAME 7414 06:18:41,135 --> 06:18:44,439 LEVEL OF ACCESS IN THE PUBLIC 7415 06:18:44,439 --> 06:18:45,807 DATA REPOSITORIES ANY 7416 06:18:45,807 --> 06:18:48,109 INVESTIGATOR STATE WOULD HAVE 7417 06:18:48,109 --> 06:18:48,376 ACCESS TO. 7418 06:18:48,376 --> 06:18:51,245 SO IF A TRIBE COMES AND WANT TO 7419 06:18:51,245 --> 06:18:54,015 APPLY FOR ACCESS TO DATA 7420 06:18:54,015 --> 06:18:55,249 REPOSITORY MAYBE IT'S THE ALL OF 7421 06:18:55,249 --> 06:18:58,052 US RESEARCHER WORK BENCH, MAYBE 7422 06:18:58,052 --> 06:19:02,824 ANOTHER BIO REPOSITORY HELD BY 7423 06:19:02,824 --> 06:19:04,425 NIH WE'D DIRECT THE TRIBE TO 7424 06:19:04,425 --> 06:19:06,561 APPLY TO ANYBODY ELSE AND THEY'D 7425 06:19:06,561 --> 06:19:08,096 HAVE ACCESS TO THE DATA. 7426 06:19:08,096 --> 06:19:10,631 THAT'S ONE WAY WE'RE THINKING 7427 06:19:10,631 --> 06:19:12,467 ABOUT THAT BUT THAT'S GOING 7428 06:19:12,467 --> 06:19:15,269 THROUGH TRIBAL CONSULTATION. 7429 06:19:15,269 --> 06:19:19,140 I IMAGINE IT WILL BE A LIVELY 7430 06:19:19,140 --> 06:19:20,308 DISCUSSION WITH HHS AND TRIBAL 7431 06:19:20,308 --> 06:19:24,479 LEADERS WHO HAVE COME TO THAT 7432 06:19:24,479 --> 06:19:27,181 CONVERSATION. 7433 06:19:27,181 --> 06:19:31,085 >> WE'VE SAID MYSELF AND OTHER 7434 06:19:31,085 --> 06:19:32,153 COLLEAGUES, TRIBES ARE GOING TO 7435 06:19:32,153 --> 06:19:33,488 CRUSH YOU ON THIS. 7436 06:19:33,488 --> 06:19:34,388 THERE'S A REAL PROBLEM HERE. 7437 06:19:34,388 --> 06:19:36,457 THERE'S SOME THINGS THAT NEED TO 7438 06:19:36,457 --> 06:19:39,360 BE REWORKED. 7439 06:19:39,360 --> 06:19:41,929 JUST TO SAY THE CONVERSATION IS 7440 06:19:41,929 --> 06:19:45,099 HAPPENING AND INTENDED TO SET UP 7441 06:19:45,099 --> 06:19:49,437 ALL AGENCIES ON BE RESPONSIVE TO 7442 06:19:49,437 --> 06:19:51,105 SHARING DATA WITH TRIBES. 7443 06:19:51,105 --> 06:19:54,742 I HIGHLY RECOMMEND FOLKS LISTEN 7444 06:19:54,742 --> 06:19:57,078 INTO THE TRIBAL CONSULTATIONS 7445 06:19:57,078 --> 06:19:58,045 ARE PUBLIC NIH AND HHS AND 7446 06:19:58,045 --> 06:19:59,447 YOU'RE ABLE TO LISTEN IN. 7447 06:19:59,447 --> 06:20:04,285 >> I WANTED TO ACKNOWLEDGE WE DO 7448 06:20:04,285 --> 06:20:07,088 HAVE TRIBAL DATA THAT I KNOW HAS 7449 06:20:07,088 --> 06:20:08,389 RESTRICTED ACCESS. 7450 06:20:08,389 --> 06:20:09,157 THAT'S ALREADY COORDINATED WITH 7451 06:20:09,157 --> 06:20:10,224 THE TRIBES IN TERMS OF 7452 06:20:10,224 --> 06:20:11,526 RESTRICTED ACCESS. 7453 06:20:11,526 --> 06:20:16,430 WE HAVE PROCESSES IN PLACE WHERE 7454 06:20:16,430 --> 06:20:18,199 THERE'S RESTRICTED ACCESS AND 7455 06:20:18,199 --> 06:20:19,534 WE'RE IN THE PROCESS OF TALKING 7456 06:20:19,534 --> 06:20:22,770 WITH OUR POLICY PEOPLE ON THE 7457 06:20:22,770 --> 06:20:25,039 GENOME SIDE AS WELL TO MAKE SURE 7458 06:20:25,039 --> 06:20:26,374 EVERYTHING'S ALIGNED WITH THE 7459 06:20:26,374 --> 06:20:36,751 POLICY WE HOPE TO SET. 7460 06:20:39,020 --> 06:20:41,389 >> MINE IS THREE INTERRELATED 7461 06:20:41,389 --> 06:20:41,656 QUESTIONS. 7462 06:20:41,656 --> 06:20:42,990 I KNOW IN THE PAST SOME RESEARCH 7463 06:20:42,990 --> 06:20:48,462 DATA HAS BEEN USED AGAINST 7464 06:20:48,462 --> 06:20:53,100 TRIBES THROUGH A FOYA REQUEST 7465 06:20:53,100 --> 06:20:56,070 ESPECIALLY IF THEY KNOW THE DATA 7466 06:20:56,070 --> 06:20:59,507 IS GOING TO BE DESTROYED SOON. 7467 06:20:59,507 --> 06:21:03,711 CERTIFICATES OF CONFIDENTIALITY 7468 06:21:03,711 --> 06:21:06,147 FROM WHAT I CAN GATHER IS 7469 06:21:06,147 --> 06:21:07,982 UNTESTED IF SOMEBODY IS 7470 06:21:07,982 --> 06:21:10,384 QUESTIONED BY THE CIA OR FBI OR 7471 06:21:10,384 --> 06:21:11,485 HOMELAND SECURITY. 7472 06:21:11,485 --> 06:21:16,457 IF THE DATA IS DESTROYED, DOES 7473 06:21:16,457 --> 06:21:19,427 NIH HAVE A POLICY OF HOW LONG 7474 06:21:19,427 --> 06:21:21,229 THE CERTIFICATES OF 7475 06:21:21,229 --> 06:21:23,998 CONFIDENTIALITY HANG AROUND? 7476 06:21:23,998 --> 06:21:25,433 SOMETIMES PEOPLE PUT A FLASH 7477 06:21:25,433 --> 06:21:28,469 DRIVE IN THEIR POCKET OR GETS 7478 06:21:28,469 --> 06:21:29,770 LOST IN THE DESK DRAWER AND THE 7479 06:21:29,770 --> 06:21:32,173 DATA SHOWS UP SOMEWHERE. 7480 06:21:32,173 --> 06:21:34,008 IF IT GETS RELEASED -- 7481 06:21:34,008 --> 06:21:34,842 >> THAT'S A VIOLATION. 7482 06:21:34,842 --> 06:21:36,711 IF THAT HAPPENS THAT PERSON WILL 7483 06:21:36,711 --> 06:21:39,513 BE IN BIG TROUBLE. 7484 06:21:39,513 --> 06:21:41,315 >> SOMETIMES IT'S AN ACCIDENT 7485 06:21:41,315 --> 06:21:43,985 IT'S A GRADUATE STUDENT OR 7486 06:21:43,985 --> 06:21:44,252 SOMETHING. 7487 06:21:44,252 --> 06:21:48,422 WHAT IS NECESSARY IS THE 7488 06:21:48,422 --> 06:21:49,690 CERTIFICATE NEEDS TO BE THERE. 7489 06:21:49,690 --> 06:21:52,026 >> IT'S AUTOMATIC NOW. 7490 06:21:52,026 --> 06:21:59,233 YOU USED TO HAVE TO APPLY FOR 7491 06:21:59,233 --> 06:22:00,701 CERTIFICATES OF CONFIDENTIALITY 7492 06:22:00,701 --> 06:22:03,104 AND ISSUED FOR ANY NIH FUNDED 7493 06:22:03,104 --> 06:22:05,206 RESEARCH AND USES IDENTIFIABLE 7494 06:22:05,206 --> 06:22:06,073 SENSITIVE INFORMATION. 7495 06:22:06,073 --> 06:22:08,109 THAT'S BEEN IN PLACE A LITTLE 7496 06:22:08,109 --> 06:22:08,409 BIT. 7497 06:22:08,409 --> 06:22:10,478 IT'S NOT A PHYSICAL CERTIFICATE. 7498 06:22:10,478 --> 06:22:12,013 I THINK PEOPLE THINK THAT'S 7499 06:22:12,013 --> 06:22:13,481 WHAT'S GOING TO HAPPEN. 7500 06:22:13,481 --> 06:22:17,318 YOU DON'T NEED TO REQUEST IT. 7501 06:22:17,318 --> 06:22:18,452 HOW LONG THAT'S IN PLACE I DON'T 7502 06:22:18,452 --> 06:22:22,189 KNOW AND WE CAN LOOK INTO THAT. 7503 06:22:22,189 --> 06:22:28,462 >> MY LAST ONE IS WE'VE BEEN 7504 06:22:28,462 --> 06:22:32,667 GETTING INCREASINGLY NON 7505 06:22:32,667 --> 06:22:34,735 DESCRIPT REASONS FOR NOT GETTING 7506 06:22:34,735 --> 06:22:35,903 TRIBAL DATA BACK. 7507 06:22:35,903 --> 06:22:37,571 THEY'LL GIVE IT BACK AND THEN 7508 06:22:37,571 --> 06:22:39,507 SAY HERE'S YOUR COPY BUT IT'S 7509 06:22:39,507 --> 06:22:40,441 STILL ON OUR DATABASE. 7510 06:22:40,441 --> 06:22:46,847 WE CONSEQUENT REMOVE IT FOR 7511 06:22:46,847 --> 06:22:49,483 TECHNICAL REASONS BUT NO LONGER 7512 06:22:49,483 --> 06:22:54,622 PUBLICALLY FACING. 7513 06:22:54,622 --> 06:22:57,091 >> WE'D EXPECT IT TO BE 7514 06:22:57,091 --> 06:23:02,463 DESTROYED AND IF IT'S AN HIP -- 7515 06:23:02,463 --> 06:23:05,366 NIH STUDY WE GET A CALL AND WE 7516 06:23:05,366 --> 06:23:05,666 FOLLOW-UP. 7517 06:23:05,666 --> 06:23:06,934 IT'S IMPORTANT TO MAKE SURE THIS 7518 06:23:06,934 --> 06:23:09,403 IS ALL IN TO NOT HAVE TO BACK 7519 06:23:09,403 --> 06:23:12,440 TRACK AND DEAL WITH THAT BUT 7520 06:23:12,440 --> 06:23:13,941 THAT'S AN ISSUE TOO. 7521 06:23:13,941 --> 06:23:19,447 >> THE FOYA REQUEST. 7522 06:23:19,447 --> 06:23:27,021 >> WHAT WAS YOUR QUESTION? 7523 06:23:27,021 --> 06:23:30,991 >> I LOOKED AT THE 1975 7524 06:23:30,991 --> 06:23:33,427 SELF-DETERMINATION ACT SAYS NO 7525 06:23:33,427 --> 06:23:34,895 DATA FROM THE TRIBE CAN BE 7526 06:23:34,895 --> 06:23:45,039 FOIBLE. 7527 06:23:54,849 --> 06:23:57,952 >> I KNOW THIS IS A TOPIC OF 7528 06:23:57,952 --> 06:24:02,957 CONVERSATION AT THE WHITE HOUSE 7529 06:24:02,957 --> 06:24:07,361 COMMITTEE ON INDIGENOUS FROTH 7530 06:24:07,361 --> 06:24:10,464 AND SUBCOMMITTEE WE SIT ON AND 7531 06:24:10,464 --> 06:24:11,599 RECOGNIZED ACROSS THE FEDERAL 7532 06:24:11,599 --> 06:24:16,437 GOVERNMENT FOYA IS A BARRIER TO 7533 06:24:16,437 --> 06:24:18,038 BEING ABLE TO PROTECT INDIGENOUS 7534 06:24:18,038 --> 06:24:21,709 KNOWLEDGE AND I THINK NIH 7535 06:24:21,709 --> 06:24:23,043 THERE'S A LIST OF CONDITIONS 7536 06:24:23,043 --> 06:24:33,587 UNDER WHICH A FEDERAL AGENCY CAN 7537 06:24:34,488 --> 06:24:42,930 DECLINE TO RESPOND TO THE DATA. 7538 06:24:42,930 --> 06:24:45,566 THERE ARE THINGS I KNOW FOLKS IN 7539 06:24:45,566 --> 06:24:47,735 OSP AND I'VE TALKED TO OTHERS 7540 06:24:47,735 --> 06:24:49,036 ABOUT THIS. 7541 06:24:49,036 --> 06:24:50,471 THIS IS AN AREA OF FOCUS. 7542 06:24:50,471 --> 06:24:52,807 I DON'T HAVE A GOOD ANSWER 7543 06:24:52,807 --> 06:24:55,209 EXACTLY HOW IT'S BEEN PLAYED OUT 7544 06:24:55,209 --> 06:24:56,811 IN PRACTICE. 7545 06:24:56,811 --> 06:24:58,979 I DON'T NO THERE'S BEEN PRESS IN 7546 06:24:58,979 --> 06:25:00,448 THE FOYA. 7547 06:25:00,448 --> 06:25:03,584 IT'S ON THE RADAR NOW. 7548 06:25:03,584 --> 06:25:04,452 IT'S BEING TALKED ABOUT MULTIPLE 7549 06:25:04,452 --> 06:25:06,854 AGENCIES. 7550 06:25:06,854 --> 06:25:08,456 >> SO THERE'S SOMETHING ABOUT 7551 06:25:08,456 --> 06:25:13,461 WHETHER IF THE TRIBE RETAINS THE 7552 06:25:13,461 --> 06:25:23,871 RECORD IT'S NOT FOYABLE. 7553 06:25:59,006 --> 06:26:00,441 >> BOBBY. 7554 06:26:00,441 --> 06:26:04,445 >> I HAD A QUICK QUESTION 7555 06:26:04,445 --> 06:26:06,180 PERHAPS CONSIDER FOR TOMORROW OR 7556 06:26:06,180 --> 06:26:11,252 WHEN EVER I KNOW THERE'S 7557 06:26:11,252 --> 06:26:13,387 INSTANCES WHERE NIH PARTNERS 7558 06:26:13,387 --> 06:26:15,356 WITH INDUSTRY FOR RESEARCH S AND 7559 06:26:15,356 --> 06:26:18,158 I THINK OF NCI OR WHATEVER, HOW 7560 06:26:18,158 --> 06:26:24,198 ARE YOU GOING TO ENSURE INDUSTRY 7561 06:26:24,198 --> 06:26:26,200 COMPLIES WITH THE NIH POLICY 7562 06:26:26,200 --> 06:26:27,368 BECAUSE THEY'RE A WHOLE 7563 06:26:27,368 --> 06:26:27,768 DIFFERENT ANIMAL. 7564 06:26:27,768 --> 06:26:29,470 THEY'RE ON THEIR OWN AND DO 7565 06:26:29,470 --> 06:26:30,504 THEIR OWN THING. 7566 06:26:30,504 --> 06:26:33,541 HOW ARE WE GOING TO ENSURE THEY 7567 06:26:33,541 --> 06:26:35,276 ABIDE BY DATA OWNERSHIP AND 7568 06:26:35,276 --> 06:26:36,443 ACCESS AND ALL THOSE THINGS 7569 06:26:36,443 --> 06:26:37,478 WE'RE TALKING ABOUT IN THE 7570 06:26:37,478 --> 06:26:37,711 POLICY? 7571 06:26:37,711 --> 06:26:41,215 THANK YOU. 7572 06:26:41,215 --> 06:26:43,017 >> GREAT QUESTION. 7573 06:26:43,017 --> 06:26:46,620 I THINK THAT'S THE FOURTH LEG OF 7574 06:26:46,620 --> 06:26:48,455 THE STOOL TALKING ABOUT 7575 06:26:48,455 --> 06:26:51,258 UNIVERSITY AND INDUSTRY'S THE 7576 06:26:51,258 --> 06:26:52,026 OTHER ONE AND ANOTHER AREA WE 7577 06:26:52,026 --> 06:26:55,462 NEED TO THINK ABOUT IN TERMS OF 7578 06:26:55,462 --> 06:26:58,098 AN NIH-FUNDED PROJECT. 7579 06:26:58,098 --> 06:27:00,467 WE'D HAVE EXPECTATIONS FOR THAT 7580 06:27:00,467 --> 06:27:01,769 CONSENT PROCESS AND COLLECTIVE 7581 06:27:01,769 --> 06:27:09,810 CONSENT TO BE ALREADY IN PLACE. 7582 06:27:09,810 --> 06:27:11,745 IF THE TRIBE WANTS TO PARTNER 7583 06:27:11,745 --> 06:27:15,416 THAT'S THE TRIBAL'S SOVEREIGN 7584 06:27:15,416 --> 06:27:15,883 DECISION. 7585 06:27:15,883 --> 06:27:17,818 WE DON'T EXPECT SOMEONE TO 7586 06:27:17,818 --> 06:27:21,622 TRANSFER IT TO INDUSTRY AND HAVE 7587 06:27:21,622 --> 06:27:24,124 THE RECORDS. 7588 06:27:24,124 --> 06:27:24,725 NOTHING CAN BE DONE WITHOUT 7589 06:27:24,725 --> 06:27:35,002 TRIBAL APPROVAL. 7590 06:27:37,538 --> 06:27:38,372 >> THAT'S COMPLEX. 7591 06:27:38,372 --> 06:27:41,375 >> THERE'S DATA THAT LIVES IN 7592 06:27:41,375 --> 06:27:42,776 THE REPOSITORIES PUBLICALLY 7593 06:27:42,776 --> 06:27:43,010 FACING. 7594 06:27:43,010 --> 06:27:45,446 THE POLICY IF I'M UNDERSTANDING 7595 06:27:45,446 --> 06:27:46,847 DIRECTLY FROM THE NIH'S 7596 06:27:46,847 --> 06:27:48,816 PERSPECTIVE IS ANY FEDERAL HI 7597 06:27:48,816 --> 06:27:51,452 FUNDED, NIH FUNDED RESEARCH THAT 7598 06:27:51,452 --> 06:27:53,988 HANDLES OR COLLECT DATA ON HUMAN 7599 06:27:53,988 --> 06:27:55,456 SUBJECTS THAT INFORMATION 7600 06:27:55,456 --> 06:27:57,257 ESPECIALLY GENOMIC AND OTHER 7601 06:27:57,257 --> 06:28:01,462 OMICS DATA HAS TO BE PUBLICALLY 7602 06:28:01,462 --> 06:28:05,799 DEPOSITED INTO A PUBLICALLY 7603 06:28:05,799 --> 06:28:08,235 FACING DATA REPOSITORY AND FOR 7604 06:28:08,235 --> 06:28:08,869 THE SCIENTIFIC COMMUNITY IS THE 7605 06:28:08,869 --> 06:28:14,842 INTENT. 7606 06:28:14,842 --> 06:28:16,577 ONCE IT GETS TO THAT POINT AND 7607 06:28:16,577 --> 06:28:19,580 LIVES IN THE PUBLIC DOMAIN OR 7608 06:28:19,580 --> 06:28:21,582 VOICES ARE LOST COMPLETELY. 7609 06:28:21,582 --> 06:28:25,352 OUR OWNERSHIP OVER OR 7610 06:28:25,352 --> 06:28:27,054 PERSPECTIVES ON THAT INFORMATION 7611 06:28:27,054 --> 06:28:32,459 IN THE PUBLIC DOMAIN IS 7612 06:28:32,459 --> 06:28:34,862 BASICALLY WE'RE NOT' AT THE 7613 06:28:34,862 --> 06:28:35,062 TABLE. 7614 06:28:35,062 --> 06:28:37,164 TO ACHIEVE SOME DEGREE OF 7615 06:28:37,164 --> 06:28:38,666 PROTECTIONS HOW THAT INFORMATION 7616 06:28:38,666 --> 06:28:43,704 OF THE DATA USED IN THE ACCESS 7617 06:28:43,704 --> 06:28:45,472 THERE'S SOME LIMITED PROTECTIONS 7618 06:28:45,472 --> 06:28:48,442 AND THERE'S A FEW EXAMPLES FOR 7619 06:28:48,442 --> 06:28:52,446 BEST PRACTICES. 7620 06:28:52,446 --> 06:28:56,517 AT THE LARGEST COHORT TO INCLUDE 7621 06:28:56,517 --> 06:28:59,019 THE LARGEST HAWAIIAN INDIVIDUALS 7622 06:28:59,019 --> 06:29:04,258 IN DATA SETS AND BIO SPECIMENS 7623 06:29:04,258 --> 06:29:07,461 AND INDIVIDUAL AND GENOMIC DATA 7624 06:29:07,461 --> 06:29:17,871 IS DEPOSITED TO DB GAP. 7625 06:29:18,372 --> 06:29:20,841 WE'RE CREATING A PROCESS WITHIN 7626 06:29:20,841 --> 06:29:26,346 DB GAP AMENABLE TO RECOGNIZE 7627 06:29:26,346 --> 06:29:27,381 THAT ANY INVESTIGATOR OR 7628 06:29:27,381 --> 06:29:31,018 INDIVIDUAL THAT'S SEEKING ACCESS 7629 06:29:31,018 --> 06:29:33,387 TO THAT INFORMATION THE DATA, 7630 06:29:33,387 --> 06:29:35,789 METADATA, GENOMIC DATA FOR 7631 06:29:35,789 --> 06:29:38,225 HAWAIIAN INDIVIDUALS BE VETTED 7632 06:29:38,225 --> 06:29:39,660 FIRST THROUGH OUR NATIVE 7633 06:29:39,660 --> 06:29:40,694 HAWAIIAN BOARD AT THE UNIVERSITY 7634 06:29:40,694 --> 06:29:42,496 OF HAWAI'I. 7635 06:29:42,496 --> 06:29:44,465 THAT REQUEST INCLUDES NOT JUST 7636 06:29:44,465 --> 06:29:47,901 AN OVERSIGHT OF THE 7637 06:29:47,901 --> 06:29:49,036 JUSTIFICATION FOR SCIENTIFIC 7638 06:29:49,036 --> 06:29:53,574 RIGOR ABOUT WHAT THE INFORMATION 7639 06:29:53,574 --> 06:29:58,545 IS GOING TO PROVIDE BUT NUANCED 7640 06:29:58,545 --> 06:29:59,680 COMMUNITY CONTACT AND 7641 06:29:59,680 --> 06:30:03,016 PERSPECTIVES FROM INDIVIDUALS 7642 06:30:03,016 --> 06:30:04,451 AND OTHER COMMUNITY MEMBERS 7643 06:30:04,451 --> 06:30:06,954 SITTING ON IN THE BOARD. 7644 06:30:06,954 --> 06:30:09,590 THAT AT LEAST GIVES A SECOND 7645 06:30:09,590 --> 06:30:13,460 PROCESS BY WHICH THE REQUEST IS 7646 06:30:13,460 --> 06:30:14,795 VETTED THROUGH AND THE REVIEWERS 7647 06:30:14,795 --> 06:30:16,463 ARE LOOKING FOR SPECIFIC THINGS 7648 06:30:16,463 --> 06:30:18,265 IN THE PROCESS. 7649 06:30:18,265 --> 06:30:18,866 SOME WE'VE ALREADY DISCUSSED 7650 06:30:18,866 --> 06:30:20,134 TODAY. 7651 06:30:20,134 --> 06:30:25,072 IT GOES BACK TO THE INVESTIGATOR 7652 06:30:25,072 --> 06:30:27,741 FOR REVISED RESUBMISSION IF 7653 06:30:27,741 --> 06:30:29,843 THERE'S ISSUES BUT THAT INCLUDES 7654 06:30:29,843 --> 06:30:32,446 RIGOROUS DISSEMINATION PLAN AS 7655 06:30:32,446 --> 06:30:33,514 WELL AS HOW THE INFORMATION WILL 7656 06:30:33,514 --> 06:30:34,481 BE RELEASED TO THE COMMUNITY AND 7657 06:30:34,481 --> 06:30:36,183 WHERE THE DATA LIVES AND THE 7658 06:30:36,183 --> 06:30:37,584 CHECK POINTS ARE IN PLACE. 7659 06:30:37,584 --> 06:30:39,386 THERE'S SOME GUIDANCE FOR DATA 7660 06:30:39,386 --> 06:30:44,758 LIVING IN THAT PUBLICALLY FACING 7661 06:30:44,758 --> 06:30:47,161 DOMAIN AND SOME DIALOGUE AND 7662 06:30:47,161 --> 06:30:48,462 COMMUNITY REPRESENTATION ON THE 7663 06:30:48,462 --> 06:30:52,466 TABLE FOR THOSE NOT FEDERALLY 7664 06:30:52,466 --> 06:30:54,568 RECOGNIZED ENTITIES. 7665 06:30:54,568 --> 06:30:56,236 THERE ARE STRATEGIES WE CAN PUT 7666 06:30:56,236 --> 06:30:57,838 IN PLACE FOR DATA IN THAT SPACE 7667 06:30:57,838 --> 06:31:00,674 AND ONCOMING DATA COLLECTED FROM 7668 06:31:00,674 --> 06:31:02,609 RESEARCHERS IN THE PROCESS. 7669 06:31:02,609 --> 06:31:07,281 AND THE SECOND THING I WANTED TO 7670 06:31:07,281 --> 06:31:09,917 ADD WAS ABOUT THE SAMPLES IN THE 7671 06:31:09,917 --> 06:31:13,921 BIO REPOSITORIES AND SIMILAR 7672 06:31:13,921 --> 06:31:17,057 PROCESS IN PLACE FOR WHEN WE'RE 7673 06:31:17,057 --> 06:31:19,426 EXPECTING THE USE OF ACCESS TO 7674 06:31:19,426 --> 06:31:20,794 SAMPLES NOT JUST THE DATA SETS 7675 06:31:20,794 --> 06:31:22,529 BUT THE SAMPLES THAT CAN BE USED 7676 06:31:22,529 --> 06:31:30,204 FOR SECONDARY ANALYSES OR OTHER 7677 06:31:30,204 --> 06:31:34,141 EXPERIMENTS REQUEST S IN THE 7678 06:31:34,141 --> 06:31:39,746 ADVISORY GROUP AND ALLOW SOME 7679 06:31:39,746 --> 06:31:40,147 DIALOGUE. 7680 06:31:40,147 --> 06:31:46,987 >> WE'RE GOING TO WORK WITH 7681 06:31:46,987 --> 06:31:49,756 FOLKS IN DB GAP AND GENOMICS AND 7682 06:31:49,756 --> 06:31:54,494 THERE'S CONTROLLED ACCESS FOR 7683 06:31:54,494 --> 06:31:56,430 DATA SHARING FOR TRIBAL DATA IN 7684 06:31:56,430 --> 06:31:58,298 PLACE BUT IT WOULD BE BETTER TO 7685 06:31:58,298 --> 06:31:59,733 HAVE A MORE CLEAR POLICY IN 7686 06:31:59,733 --> 06:32:01,168 PLACE AND ANOTHER REASON TO HAVE 7687 06:32:01,168 --> 06:32:03,403 A POTENTIAL INVESTIGATE 7688 06:32:03,403 --> 06:32:04,671 OPPORTUNITY TO WHERE HOW THE 7689 06:32:04,671 --> 06:32:09,877 NATIVE IRB MAY BE PART OF THAT 7690 06:32:09,877 --> 06:32:10,744 OR NOT. 7691 06:32:10,744 --> 06:32:12,646 IF ANYONE HAS AN INTERESTING TO 7692 06:32:12,646 --> 06:32:15,048 DEVELOP IT BECAUSE WITH NEED AN 7693 06:32:15,048 --> 06:32:15,415 EXTENSIVE LIST. 7694 06:32:15,415 --> 06:32:17,985 IT'S NOT GOING TO BE A SHORT 7695 06:32:17,985 --> 06:32:20,053 LIST LIKE A GROUP OF EXPERTS 7696 06:32:20,053 --> 06:32:21,154 CALLED FOR PANEL SITUATIONS THAT 7697 06:32:21,154 --> 06:32:26,360 MAY COME UP. 7698 06:32:26,360 --> 06:32:29,029 WE'LL LOOK TO EXAMPLES WHERE 7699 06:32:29,029 --> 06:32:30,964 IT'S BEEN SUCCESSFUL. 7700 06:32:30,964 --> 06:32:31,598 LET US KNOW BECAUSE WE'LL LOOK 7701 06:32:31,598 --> 06:32:41,708 AT THAT HERE. 7702 06:32:41,708 --> 06:32:43,577 >> TOTALLY CHANGING THE SUBJECT. 7703 06:32:43,577 --> 06:32:45,612 ON TRAINING, I MENTIONED 7704 06:32:45,612 --> 06:32:46,079 TRAINING EARLIER. 7705 06:32:46,079 --> 06:32:51,485 IT'S HARD TO TRAIN PEOPLE IN HOW 7706 06:32:51,485 --> 06:32:56,323 TO WORK WITH INDIGENOUS SAMPLES 7707 06:32:56,323 --> 06:33:03,764 AND WE NEED TO DO RESEARCH ON 7708 06:33:03,764 --> 06:33:08,769 INDIGENOUS SAMPLES. 7709 06:33:08,769 --> 06:33:13,273 WHAT TRAINING ARE PEOPLE WHO 7710 06:33:13,273 --> 06:33:14,441 WORK WITH INDIGENOUS SAMPLES 7711 06:33:14,441 --> 06:33:16,543 WHAT DO THEY HAVE TO GO THROUGH? 7712 06:33:16,543 --> 06:33:24,017 WE HAVE AN NIH ETHICAL TRAINING 7713 06:33:24,017 --> 06:33:25,152 AND WHAT'S THE PLAN TO TRAIN 7714 06:33:25,152 --> 06:33:27,821 INDIGENOUS SCIENTISTS TO HAVE 7715 06:33:27,821 --> 06:33:29,623 MORE PEOPLE TO SPEAK ON THESE? 7716 06:33:29,623 --> 06:33:40,033 >> BOTH GOOD QUESTIONS. 7717 06:33:45,105 --> 06:33:49,209 >> I DON'T HAVE AN ANSWER. 7718 06:33:49,209 --> 06:33:55,949 >> PROTOCOL GOES TO ANY HUMAN 7719 06:33:55,949 --> 06:33:56,483 SUBJECTS RESEARCH WE'RE 7720 06:33:56,483 --> 06:34:01,588 REQUIRING INVESTIGATORS TO TAKE 7721 06:34:01,588 --> 06:34:05,592 COMMUNITY-BASED COURSE TO LEARN 7722 06:34:05,592 --> 06:34:06,626 ABOUT OUR COMMUNITY AND PROVIDE 7723 06:34:06,626 --> 06:34:08,362 EXPERIENCES FOR INVESTIGATORS TO 7724 06:34:08,362 --> 06:34:11,198 LEARN FROM OUR COMMUNITY 7725 06:34:11,198 --> 06:34:11,465 PARTNERS. 7726 06:34:11,465 --> 06:34:13,467 SO WE EMBED THAT IN THE PROCESS 7727 06:34:13,467 --> 06:34:17,571 OF ENGAGING OUR COMMUNITY 7728 06:34:17,571 --> 06:34:18,238 PARTNERS. 7729 06:34:18,238 --> 06:34:22,109 BECAUSE INVESTIGATORS BRING 7730 06:34:22,109 --> 06:34:24,478 VALUABLE EXPERTISE AND KNOWLEDGE 7731 06:34:24,478 --> 06:34:25,479 TO OUR INVESTIGATORS. 7732 06:34:25,479 --> 06:34:32,686 IT'S A MAJOR WE TRY TO MATCH 7733 06:34:32,686 --> 06:34:33,487 MAKE AND PROVIDE GUIDANCE 7734 06:34:33,487 --> 06:34:35,222 LEARNING THE CONTEXT AND HISTORY 7735 06:34:35,222 --> 06:34:40,460 AND CULTURE AND ALL THAT IS 7736 06:34:40,460 --> 06:34:44,331 IMPORTANT AND WE HAVE A 7737 06:34:44,331 --> 06:34:46,099 STRATEGIC PROTOCOL IN PLACE FOR 7738 06:34:46,099 --> 06:34:50,537 THAT TO HAPPEN AND THAT'S GOING 7739 06:34:50,537 --> 06:34:51,872 EXTRA BEYOND THE SCOPE OF WHAT 7740 06:34:51,872 --> 06:34:55,842 IS REQUIRED BY US FROM THE NIH'S 7741 06:34:55,842 --> 06:34:56,376 PERSPECTIVE. 7742 06:34:56,376 --> 06:34:59,012 AND I THINK IN SOME SENSE THAT 7743 06:34:59,012 --> 06:35:01,481 CAN BE BAKED INTO THE PROCESS 7744 06:35:01,481 --> 06:35:02,149 AND POLICY THERE'S AN 7745 06:35:02,149 --> 06:35:04,484 EXPECTATION OF INVESTIGATORS TO 7746 06:35:04,484 --> 06:35:05,752 UNDERSTAND THAT CONTEXT AND 7747 06:35:05,752 --> 06:35:09,723 INFORMATION AND HOW TO WORK WITH 7748 06:35:09,723 --> 06:35:12,826 THE COMMUNITY PARTNERS. 7749 06:35:12,826 --> 06:35:17,764 >> INITIATIVES LIKE AN IRB. 7750 06:35:17,764 --> 06:35:19,866 >> I ALMOST WISH WE HAD 7751 06:35:19,866 --> 06:35:27,007 SOMETHING SIMILAR FOR REVIEWERS. 7752 06:35:27,007 --> 06:35:34,081 OFTEN TIMES IT'S MISSED. 7753 06:35:34,081 --> 06:35:36,116 WE ARE REQUIRED TO HAVE TRAINING 7754 06:35:36,116 --> 06:35:45,559 FOR IMPLICIT BIAS. 7755 06:35:45,559 --> 06:35:53,467 WHEN WE DISSEMINATE OUR DATA 7756 06:35:53,467 --> 06:35:55,469 SHARING POLICY IT'S ENOUGH TO 7757 06:35:55,469 --> 06:35:56,937 COMPLY WITH CURRENT NIH POLICY. 7758 06:35:56,937 --> 06:35:59,272 WE KNOW WHEN WE WORK WITH OUR 7759 06:35:59,272 --> 06:36:02,209 COMMUNITY THAT EXTRA NEEDED AND 7760 06:36:02,209 --> 06:36:04,311 PROVIDE A STRUCTURED APPROACH 7761 06:36:04,311 --> 06:36:05,946 HOW TO DISSEMINATE AND ENGAGE 7762 06:36:05,946 --> 06:36:10,884 OUR COMMUNITY PARTNERS IN THIS 7763 06:36:10,884 --> 06:36:11,151 DIALOGUE. 7764 06:36:11,151 --> 06:36:12,452 IT REQUIRES A LOT OF OUR BUDGET 7765 06:36:12,452 --> 06:36:14,621 AND BUDGET ACCORDINGLY ON OUR 7766 06:36:14,621 --> 06:36:14,888 GRANT. 7767 06:36:14,888 --> 06:36:17,791 THERE'S EXAMPLES WHERE MORE THAN 7768 06:36:17,791 --> 06:36:19,493 60% OF THE BUDGET IS 7769 06:36:19,493 --> 06:36:21,928 DISSEMINATED DIRECTLY BACK TO 7770 06:36:21,928 --> 06:36:22,596 COMMUNITY INVESTING IN COMMUNITY 7771 06:36:22,596 --> 06:36:25,465 AND IT'S TO HELP WITH THE 7772 06:36:25,465 --> 06:36:27,467 RESEARCH AND BUILD CAPACITY IN 7773 06:36:27,467 --> 06:36:29,202 THE RESEARCH FOR THE ENGAGEMENT 7774 06:36:29,202 --> 06:36:30,370 AND EDUCATION AND THINGS THAT 7775 06:36:30,370 --> 06:36:34,808 KNEAD TO HAPPEN AS PART OF THAT 7776 06:36:34,808 --> 06:36:35,175 PROCESS. 7777 06:36:35,175 --> 06:36:37,377 I DON'T THINK THAT'S WELL 7778 06:36:37,377 --> 06:36:39,279 RECOGNIZED IN THE RFA IN THE 7779 06:36:39,279 --> 06:36:39,913 INITIAL LANGUAGE AND THE REVIEW 7780 06:36:39,913 --> 06:36:45,252 PROCESS. 7781 06:36:45,252 --> 06:36:48,088 WE NEED A BIT MORE STRUCTURED 7782 06:36:48,088 --> 06:36:49,489 APPROACH FOR THE TYPICAL 7783 06:36:49,489 --> 06:36:50,991 PRACTICES WITH EXPECT TO SEE 7784 06:36:50,991 --> 06:36:53,527 FROM THE INVESTIGATORS THAT ARE 7785 06:36:53,527 --> 06:36:54,761 ENGAGING IN OUR INDIGENOUS 7786 06:36:54,761 --> 06:36:57,063 COMMUNITIES AND PROVIDE THAT 7787 06:36:57,063 --> 06:36:57,964 SPACE AND BUDGET THAT'S REQUIRED 7788 06:36:57,964 --> 06:37:04,271 IN THE PROCESS TO HAPPEN. 7789 06:37:04,271 --> 06:37:11,144 >> WE HAVE THINGS MOVING IN THE 7790 06:37:11,144 --> 06:37:12,712 CORRECT DIRECTION AND FUNDING 7791 06:37:12,712 --> 06:37:13,780 SOME OPPORTUNITIES AND THERE'S A 7792 06:37:13,780 --> 06:37:18,952 HUGE AMOUNT OF TIME FOR 7793 06:37:18,952 --> 06:37:24,257 INFRASTRUCTURE DEVELOPMENT SO 7794 06:37:24,257 --> 06:37:25,492 PEOPLE ARE STARTING TO GET WITH 7795 06:37:25,492 --> 06:37:30,030 THAT IN A GOOD WAY IN NIH AND ON 7796 06:37:30,030 --> 06:37:31,198 THE REVIEWERS SIDE MAKING 7797 06:37:31,198 --> 06:37:32,432 POLICIES IN PLACE BUT WE NEED TO 7798 06:37:32,432 --> 06:37:34,668 MAKE SURE EVERYBODY'S ON THE 7799 06:37:34,668 --> 06:37:36,369 SAME PAGE AND TIDYING UP SOME 7800 06:37:36,369 --> 06:37:36,670 THINGS. 7801 06:37:36,670 --> 06:37:41,808 WE'LL HAVE GUIDANCE DOCUMENTS 7802 06:37:41,808 --> 06:37:45,545 AND SUPPLEMENTAL THINGS WITH 7803 06:37:45,545 --> 06:37:48,648 POLICY DEVELOPED IN THE FIRST OF 7804 06:37:48,648 --> 06:37:49,649 THE YEAR. 7805 06:37:49,649 --> 06:37:52,052 >> I WANTED TO ANSWER THE 7806 06:37:52,052 --> 06:37:55,488 QUESTION, KAYLA I DON'T KNOW IF 7807 06:37:55,488 --> 06:37:59,259 YOU GOT AN ANSWER ABOUT PROGRAM 7808 06:37:59,259 --> 06:37:59,526 OFFICERS. 7809 06:37:59,526 --> 06:38:07,467 IN OUR NEW COHORT IN UNDER 7810 06:38:07,467 --> 06:38:08,435 REPRESENTED POPULATIONS THEY 7811 06:38:08,435 --> 06:38:12,439 FELT THE PROGRAM OFFICERS WERE 7812 06:38:12,439 --> 06:38:17,777 ILL EQUIPPED TO UNDERSTAND THE 7813 06:38:17,777 --> 06:38:18,878 CULTURAL PROCESS FOR THE 7814 06:38:18,878 --> 06:38:20,447 POPULATIONS THEY'RE OVERSEEING 7815 06:38:20,447 --> 06:38:22,048 AND WAS GOING TO ASK PEOPLE 7816 06:38:22,048 --> 06:38:24,117 AROUND THE ROOM WHETHER THEY 7817 06:38:24,117 --> 06:38:28,355 HAVE A CULTURAL HUMILITY PROGRAM 7818 06:38:28,355 --> 06:38:33,760 FOR THE TRIBES AND COMMUNITIES 7819 06:38:33,760 --> 06:38:44,271 YOU'RE WORKING WITH CULTURAL 7820 06:39:25,045 --> 06:39:25,245 HUMILITY. 7821 06:39:25,245 --> 06:39:27,147 >> HAS THERE BEEN TRAINING 7822 06:39:27,147 --> 06:39:29,182 ONLINE OR WEB BASED OR SOMETHING 7823 06:39:29,182 --> 06:39:30,283 LIKE THAT? 7824 06:39:30,283 --> 06:39:33,620 >> WE HAVE CULTURAL TRAININGS ON 7825 06:39:33,620 --> 06:39:35,755 OUR CAMPUS AN ONE BASED OFF A 7826 06:39:35,755 --> 06:39:41,127 COUPLE UNIVERSITIES AND TRIBAL 7827 06:39:41,127 --> 06:39:45,865 NATIONS ON IRB REGULATORY BUT 7828 06:39:45,865 --> 06:39:46,666 HAVEN'T BEEN SUCCESSFUL IN 7829 06:39:46,666 --> 06:39:48,301 PEOPLE COMPLETING THE TRAINING 7830 06:39:48,301 --> 06:39:49,135 BECAUSE IT'S NOT TIED TO A 7831 06:39:49,135 --> 06:39:53,273 REQUIREMENT BY THE UNIVERSITY. 7832 06:39:53,273 --> 06:39:57,110 >> IN OUR INDIVIDUAL PROGRAMS WE 7833 06:39:57,110 --> 06:39:59,346 REQUIRE MULTI-CULTURAL EDUCATION 7834 06:39:59,346 --> 06:40:00,780 AND THAT'S USUALLY WITH ISSUES 7835 06:40:00,780 --> 06:40:02,449 INVOLVED IN IT BUT I THINK IT'S 7836 06:40:02,449 --> 06:40:06,953 SOMETHING WE WOULD NEED TO 7837 06:40:06,953 --> 06:40:10,323 PROVIDE RESOURCES TO SCALE UP OR 7838 06:40:10,323 --> 06:40:12,125 CROSS-WISE ANY EDUCATIONAL 7839 06:40:12,125 --> 06:40:14,994 CURRICULA BECAUSE IT IS THE ONE 7840 06:40:14,994 --> 06:40:16,896 THING WE ASKED AS NATIVE PEOPLE 7841 06:40:16,896 --> 06:40:19,499 RESEARCHERS OR SCHOLARS ALL THE 7842 06:40:19,499 --> 06:40:19,699 TIME. 7843 06:40:19,699 --> 06:40:23,937 IT'S ON TOP OF EVERYTHING ELSE 7844 06:40:23,937 --> 06:40:26,740 WE'RE THEY'RE ASKING US TO 7845 06:40:26,740 --> 06:40:28,274 EDUCATE THE ENTIRE EDUCATION. 7846 06:40:28,274 --> 06:40:30,276 THAT HAS TO BE COMPENSATED. 7847 06:40:30,276 --> 06:40:31,678 THAT THE BEEN MY THING IS THERE 7848 06:40:31,678 --> 06:40:32,379 HAS TO BE EQUITY. 7849 06:40:32,379 --> 06:40:35,081 THIS IS GOING TO BE MY COMMENT 7850 06:40:35,081 --> 06:40:36,416 ABOUT THE IRB. 7851 06:40:36,416 --> 06:40:37,484 HAVING BEEN ON TWO DIFFERENT 7852 06:40:37,484 --> 06:40:40,587 IRBs IT'S A REALLY IMPORTANT 7853 06:40:40,587 --> 06:40:40,920 ISSUE. 7854 06:40:40,920 --> 06:40:45,759 IT'S A LARGER TOPIC BUT WITH 7855 06:40:45,759 --> 06:40:48,328 INDIGENOUS SOVEREIGNTY WE LOOK 7856 06:40:48,328 --> 06:40:50,597 TO THE TRIBES TO SEE WHO SITS ON 7857 06:40:50,597 --> 06:40:54,334 THE IRB BOARDS BUT PRONE TO 7858 06:40:54,334 --> 06:40:54,901 CORRUPTION. 7859 06:40:54,901 --> 06:40:57,670 WHAT YOU SEE IS THAT PARTICULAR 7860 06:40:57,670 --> 06:40:59,105 UNIVERSITIES UNDERSTAND THAT AND 7861 06:40:59,105 --> 06:41:04,444 GO AND GROOM WHEREVER THAT IRB 7862 06:41:04,444 --> 06:41:12,051 IS IT'S NOT A NICE TERM BUT 7863 06:41:12,051 --> 06:41:13,186 THERE'S BEEN CORRUPT THINGS THAT 7864 06:41:13,186 --> 06:41:19,325 HAVE HAPPENED AND GOTTEN RID OF 7865 06:41:19,325 --> 06:41:25,365 PEOPLE ESTABLISHED REVIEW EERS D 7866 06:41:25,365 --> 06:41:26,900 PEOPLE GETTING THE PRIMARY 7867 06:41:26,900 --> 06:41:28,868 FUNDING AND THOSE ARE THE ONLY 7868 06:41:28,868 --> 06:41:30,470 PROPOSALS THAT GET REVIEWED UP A 7869 06:41:30,470 --> 06:41:32,772 TIMELY MANNER. 7870 06:41:32,772 --> 06:41:35,909 THERE'S HOLES IN THESE SYSTEMS 7871 06:41:35,909 --> 06:41:38,244 VERY MUCH -- IT'S DIFFICULT AND 7872 06:41:38,244 --> 06:41:40,947 COMPLEX BECAUSE THESE ARE TRIBAL 7873 06:41:40,947 --> 06:41:43,583 ENTITIES THAT ARE GOVERNMENTAL 7874 06:41:43,583 --> 06:41:44,083 ORGANIZATIONS. 7875 06:41:44,083 --> 06:41:45,885 IT DOES GO TO THE QUESTION OF 7876 06:41:45,885 --> 06:41:46,152 TRAINING. 7877 06:41:46,152 --> 06:41:49,222 I DO THINK IT'S A VERY SPECIFIC 7878 06:41:49,222 --> 06:41:50,089 NEED THROUGHOUT. 7879 06:41:50,089 --> 06:41:54,794 >> THIS IS FOR NIH PROGRAM 7880 06:41:54,794 --> 06:41:55,061 OFFICERS. 7881 06:41:55,061 --> 06:41:56,629 >> WE DON'T HAVE ANYTHING FOR 7882 06:41:56,629 --> 06:41:57,197 PROGRAM OFFICERS. 7883 06:41:57,197 --> 06:41:59,732 WE'RE TRYING TO START WITH OUR 7884 06:41:59,732 --> 06:42:00,166 RESEARCHERS. 7885 06:42:00,166 --> 06:42:02,001 THIS IS THROUGH OUR RESEARCH 7886 06:42:02,001 --> 06:42:03,803 OFFICE BUT I AGREE WITH YOU 7887 06:42:03,803 --> 06:42:04,137 COMPLETELY. 7888 06:42:04,137 --> 06:42:06,105 I THINK IT WOULD BE SOMETHING 7889 06:42:06,105 --> 06:42:11,878 THAT ALL OF US COULD SCALE TO BE 7890 06:42:11,878 --> 06:42:15,281 HELPFUL FOR THAT BECAUSE EVERY 7891 06:42:15,281 --> 06:42:20,453 INDIGENOUS COMMUNITY AND TRIBE 7892 06:42:20,453 --> 06:42:28,962 OR VILLAGE HAS THEIR OWN STORY 7893 06:42:28,962 --> 06:42:39,572 AND NATIVE P.I. THEY THINK IT'S 7894 06:42:40,507 --> 06:42:50,517 MO 7895 06:42:53,553 --> 06:42:53,820 MO 7896 06:42:53,820 --> 06:42:54,153 MO 7897 06:42:54,153 --> 06:42:54,487 MO 7898 06:42:54,487 --> 06:42:55,488 MO 7899 06:42:55,488 --> 06:43:05,698 MONOLITHIC. 7900 06:43:06,299 --> 06:43:08,434 >> THIS IS IS IMPORTANT FOR THE 7901 06:43:08,434 --> 06:43:11,905 WORKFORCE DEVELOPMENT PIECE ON 7902 06:43:11,905 --> 06:43:12,438 OUR END. 7903 06:43:12,438 --> 06:43:14,407 MATT AND JULIE AND BE THE WE 7904 06:43:14,407 --> 06:43:16,442 HAVE TO WRAP UP TO CATCH THE 7905 06:43:16,442 --> 06:43:21,147 BUS. 7906 06:43:21,147 --> 06:43:25,485 IN TALKING ABOUT DATA REUSE, DB 7907 06:43:25,485 --> 06:43:27,020 GAP WAS A PLACE TO THINK OF 7908 06:43:27,020 --> 06:43:29,289 SETTING EXPECTATIONS. 7909 06:43:29,289 --> 06:43:30,790 I WOULD STRONGLY URGE AN 7910 06:43:30,790 --> 06:43:33,092 EXPANSION TO THE ENTIRE SRA 7911 06:43:33,092 --> 06:43:33,560 COLLECTION. 7912 06:43:33,560 --> 06:43:39,065 REASON I SAY THAT IS EVEN WITH 7913 06:43:39,065 --> 06:43:43,937 NIEHS SAMPLES TAKEN FROM 7914 06:43:43,937 --> 06:43:44,671 DEPOSITS THERE'S HUMAN MATERIAL 7915 06:43:44,671 --> 06:43:45,638 IN THERE. 7916 06:43:45,638 --> 06:43:49,475 YOU CAN SCRAPE 1% OF THE DNA AS 7917 06:43:49,475 --> 06:43:52,679 HUMAN AND IF YOU PICK CERTAIN 7918 06:43:52,679 --> 06:43:54,447 SITES YOU GET CERTAIN PEOPLE. 7919 06:43:54,447 --> 06:43:56,416 >> GOOD POINT. 7920 06:43:56,416 --> 06:43:57,283 >> THERE'S AN EASY TECHNICAL 7921 06:43:57,283 --> 06:43:58,351 TRICK TO DO IT. 7922 06:43:58,351 --> 06:43:58,818 >> THANK YOU. 7923 06:43:58,818 --> 06:44:01,187 THAT'S WHY WE HAVE YOU GUYS HERE 7924 06:44:01,187 --> 06:44:04,457 AS EXPERTS IN THE AREA. 7925 06:44:04,457 --> 06:44:05,792 THAT'S VERY HELPFUL. 7926 06:44:05,792 --> 06:44:12,031 >> ON THE NIH SIDE OF THESE 7927 06:44:12,031 --> 06:44:14,734 RESTRICTED DATA SETS AND DB GAP, 7928 06:44:14,734 --> 06:44:17,503 WHO OR HOW ARE TRIBES ENSURED 7929 06:44:17,503 --> 06:44:22,008 IT'S FOLLOWED ON THAT SIDE? 7930 06:44:22,008 --> 06:44:25,578 IT'S GREAT TO HAVE POLICIES BUT 7931 06:44:25,578 --> 06:44:29,349 HOW DO WE KNOW THEY'RE BEING 7932 06:44:29,349 --> 06:44:30,049 ENFORCED OR WHO IS 7933 06:44:30,049 --> 06:44:34,921 RESPONSIBILITY DOES THAT LIE 7934 06:44:34,921 --> 06:44:35,455 WITH? 7935 06:44:35,455 --> 06:44:39,626 >> THERE'S ISSUES AND DATA 7936 06:44:39,626 --> 06:44:41,961 HOUSED HERE AND EXTRAMURAL 7937 06:44:41,961 --> 06:44:43,496 RESEARCHERS DOING THEIR OWN 7938 06:44:43,496 --> 06:44:44,931 THING ACCORDING TO THE 7939 06:44:44,931 --> 06:44:45,765 UNIVERSITY AND MAY HAVE SHARED 7940 06:44:45,765 --> 06:44:47,333 THEIR DATA AND WE DON'T KNOW AND 7941 06:44:47,333 --> 06:44:49,535 THAT'S A MAJOR ISSUE. 7942 06:44:49,535 --> 06:44:52,405 WE CAN LOOK MORE CLOSELY -- WE 7943 06:44:52,405 --> 06:44:56,843 HAVEN'T TURNED OUR FOCUS YET TO 7944 06:44:56,843 --> 06:45:00,980 FOR EXAMPLE DB GAP AND WE TO THE 7945 06:45:00,980 --> 06:45:06,319 GENERALLY WHEN WE HAVE A POLICY 7946 06:45:06,319 --> 06:45:09,656 IN PLACE SOMETHING CAN'T BE 7947 06:45:09,656 --> 06:45:10,757 RELEASED WITHOUT PERMISSION FOR 7948 06:45:10,757 --> 06:45:15,561 ANYTHING CONTROLLED OR 7949 06:45:15,561 --> 06:45:21,134 RESTRICTED ACCESS. 7950 06:45:21,134 --> 06:45:22,669 >> DO YOU HAVE INFORMATION ON 7951 06:45:22,669 --> 06:45:24,470 DAB GAP IN TERMS OF CONTROLLED 7952 06:45:24,470 --> 06:45:28,875 ACCESS? 7953 06:45:28,875 --> 06:45:31,511 >> I CAN SHARE MY PERSPECTIVE 7954 06:45:31,511 --> 06:45:32,912 FROM THE NATIONAL HUMAN GENOME 7955 06:45:32,912 --> 06:45:37,517 INSTITUTE WHICH IS NOT THE ONLY 7956 06:45:37,517 --> 06:45:41,120 INSTITUTE THAT FUNDS OR 7957 06:45:41,120 --> 06:45:43,356 GENERATES OR STORES GENOMIC 7958 06:45:43,356 --> 06:45:43,556 DATA. 7959 06:45:43,556 --> 06:45:45,792 A LOT OF OTHER INSTITUTES DO AS 7960 06:45:45,792 --> 06:45:49,462 WELL BUT I SIT ON OUR INSTITUTE 7961 06:45:49,462 --> 06:45:55,201 HAS A GOVERNANCE COMMITTEE THAT 7962 06:45:55,201 --> 06:46:01,507 MEETS MONTHLY TO DISCUSS 7963 06:46:01,507 --> 06:46:03,209 IMPORTANT DEVELOPMENTS OUTSIDE 7964 06:46:03,209 --> 06:46:04,877 OUR USUAL DAY TO DAY STUFF 7965 06:46:04,877 --> 06:46:07,513 RELATED TO EXCEPTIONS TO DATA 7966 06:46:07,513 --> 06:46:09,315 SHARING, COMPLICATED REQUESTS. 7967 06:46:09,315 --> 06:46:12,452 THERE'S A DATA ACCESS COMMITTEE 7968 06:46:12,452 --> 06:46:17,256 THAT'S APPOINTED SPECIFICALLY TO 7969 06:46:17,256 --> 06:46:19,926 APPROVE ACCESS TO DATA AND 7970 06:46:19,926 --> 06:46:22,729 ENFORCE DATA USE LIMITATIONS 7971 06:46:22,729 --> 06:46:24,497 ASSIGNED PARTICULAR DATA SETS 7972 06:46:24,497 --> 06:46:27,667 INCLUDING RESTRICTIONS ON ACCESS 7973 06:46:27,667 --> 06:46:30,937 TO TRIBAL DATA IF THEY'RE 7974 06:46:30,937 --> 06:46:31,204 DEPOSITED. 7975 06:46:31,204 --> 06:46:39,512 I DON'T KNOW THAT WE HAVE IN 7976 06:46:39,512 --> 06:46:42,815 NHGRI A LOT OF DATA THROUGH THE 7977 06:46:42,815 --> 06:46:43,916 STUDIES THAT INCLUDE TRIBAL DATA 7978 06:46:43,916 --> 06:46:45,985 ACTUALLY BUT TO GIVE YOU AN OVER 7979 06:46:45,985 --> 06:46:49,489 ALL PICTURE HOW IT'S HANDLED 7980 06:46:49,489 --> 06:46:53,159 THERE'S A DATA ACCESS COMMITTEE 7981 06:46:53,159 --> 06:46:56,062 A DATA GOVERNANCE STRUCTURE AND 7982 06:46:56,062 --> 06:46:57,830 OPERATIONS COMMITTEE THAT EVERY 7983 06:46:57,830 --> 06:47:01,367 SEES THE DAY IT DAY FUNCTIONING 7984 06:47:01,367 --> 06:47:03,503 OF THESE THINGS FOR ONE 7985 06:47:03,503 --> 06:47:03,803 INSTITUTE. 7986 06:47:03,803 --> 06:47:07,006 THERE'S MULTIPLE STRUCTURES 7987 06:47:07,006 --> 06:47:08,341 ACROSS THE INSTITUTES WHICH 7988 06:47:08,341 --> 06:47:10,877 DRIVES HOME THE POINT OF SILOS 7989 06:47:10,877 --> 06:47:15,014 AND SEPARATE WAYS OF DOING 7990 06:47:15,014 --> 06:47:18,017 BUSINESS BUT RECENTLY THERE'S A 7991 06:47:18,017 --> 06:47:19,852 LOT OF MORE XAURG NOTES AND 7992 06:47:19,852 --> 06:47:24,891 EXPERIENCES ACROSS THE DIFFERENT 7993 06:47:24,891 --> 06:47:32,498 INSTITUTES SO THERE'S A GROUP 7994 06:47:32,498 --> 06:47:39,872 THAT MEETS MONTHLY TO ENSURE 7995 06:47:39,872 --> 06:47:43,776 BEST PRACTICES. 7996 06:47:43,776 --> 06:47:46,145 I KNOW WE HAVE A REPRESENTATIVE 7997 06:47:46,145 --> 06:47:47,713 FROM OUR INSTITUTE. 7998 06:47:47,713 --> 06:47:52,451 IT'S A COMPLICATED BUREAUCRACY. 7999 06:47:52,451 --> 06:47:54,987 >> WE'RE HEARING WE NEED CLEAR 8000 06:47:54,987 --> 06:47:58,057 PROCESSES IN PLACE SO THINGS 8001 06:47:58,057 --> 06:47:59,458 DON'T FALL THROUGH THE CRACKS IN 8002 06:47:59,458 --> 06:48:00,860 A BUREAUCRATIC STRUCTURE. 8003 06:48:00,860 --> 06:48:03,429 WE NEED NOT ONLY A POLICY BUT 8004 06:48:03,429 --> 06:48:05,364 CLEAR GUIDANCE AND STEPS IN 8005 06:48:05,364 --> 06:48:08,434 PLACE SO THINGS DON'T GET LOST 8006 06:48:08,434 --> 06:48:09,836 OR PEOPLE DON'T SIDE STEP THE 8007 06:48:09,836 --> 06:48:11,704 PROCESSES AND THAT'S GOING TO BE 8008 06:48:11,704 --> 06:48:11,971 CRITICAL. 8009 06:48:11,971 --> 06:48:13,239 >> THAT WOULD HAVE BEEN A 8010 06:48:13,239 --> 06:48:15,808 QUICKER WAY TO ANSWER THE 8011 06:48:15,808 --> 06:48:16,442 QUESTION. 8012 06:48:16,442 --> 06:48:23,182 >> BACK TO THE OCTOPUS. 8013 06:48:23,182 --> 06:48:24,984 >> THANK YOU IT LEADS TO WHAT 8014 06:48:24,984 --> 06:48:31,490 QUESTIONS WE NEED TOFIDE IN OUR 8015 06:48:31,490 --> 06:48:32,124 SOVEREIGNTY DEVELOPMENT AND I'M 8016 06:48:32,124 --> 06:48:39,432 APPRECIATIVE. 8017 06:48:39,432 --> 06:48:45,638 [OFF-MIC] 8018 06:48:45,638 --> 06:48:47,273 >> IN TERMS OF IF THE TRIBE 8019 06:48:47,273 --> 06:48:50,910 DOESN'T RETAIN THE RECORD AND 8020 06:48:50,910 --> 06:48:51,844 IT'S SOMETHING THAT THE 8021 06:48:51,844 --> 06:49:02,388 GOVERNMENT NOW HAS THAT CAN BE 8022 06:49:05,758 --> 06:49:06,025 FOYAED. 8023 06:49:06,025 --> 06:49:11,163 IF THERE ARE LAWS THAT PROHIBIT 8024 06:49:11,163 --> 06:49:12,231 PROTECTIONS THERE'S REASONS IT'S 8025 06:49:12,231 --> 06:49:13,966 EXEMPT FROM FOYA. 8026 06:49:13,966 --> 06:49:19,505 THERE'S ALSO WORTH NOTING STATE 8027 06:49:19,505 --> 06:49:21,407 LAWS ANALOGOUS AND THOSE OPERATE 8028 06:49:21,407 --> 06:49:21,707 DIFFERENTLY. 8029 06:49:21,707 --> 06:49:29,048 THOSE ARE THINGS TO NOTE. 8030 06:49:29,048 --> 06:49:30,983 ALSO IN THE 21st CENTURIES CURES 8031 06:49:30,983 --> 06:49:40,459 ACT THERE'S A PROVISION IN 8032 06:49:40,459 --> 06:49:47,800 SECTION ABOUT THE EXEMPTION OF 8033 06:49:47,800 --> 06:49:49,035 HUME ANPROTECTION AND DATA. 8034 06:49:49,035 --> 06:49:52,972 >> WHILE GO OVER BRIEFLY THE 8035 06:49:52,972 --> 06:49:54,840 SCHEDULE FOR TOMORROW. 8036 06:49:54,840 --> 06:49:56,142 IT'S BEEN A VERY FRUITFUL DAY 8037 06:49:56,142 --> 06:50:01,080 FOR US. 8038 06:50:01,080 --> 06:50:04,450 I HOPE YOU GET A GREAT NIGHT 8039 06:50:04,450 --> 06:50:09,388 REST AND NOT THINK DATA 8040 06:50:09,388 --> 06:50:11,958 SOVEREIGNTY BUT IF YOU HAVE 8041 06:50:11,958 --> 06:50:13,793 INSPIRED PLEASE TELL US. 8042 06:50:13,793 --> 06:50:16,062 WE NEED YOUR VOICE AND NEED TO 8043 06:50:16,062 --> 06:50:17,363 HEAR YOUR THOUGHTS AND QUESTIONS 8044 06:50:17,363 --> 06:50:19,031 LIKE I SAID ARE JUST AS 8045 06:50:19,031 --> 06:50:21,367 IMPORTANT EVEN IF WE DON'T KNOW 8046 06:50:21,367 --> 06:50:22,268 THE IMMEDIATE ANSWER BECAUSE 8047 06:50:22,268 --> 06:50:23,302 THAT GUIDES US TO WHAT WE SHOULD 8048 06:50:23,302 --> 06:50:25,571 BE DOING NEXT AND IF YOU HAVE A 8049 06:50:25,571 --> 06:50:27,540 PARTICULAR AREA OF EXPERTISE WE 8050 06:50:27,540 --> 06:50:28,741 HAVE A RANGE OF DIFFERENT TYPES 8051 06:50:28,741 --> 06:50:31,277 OF EXPERTISE AT THE TABLE. 8052 06:50:31,277 --> 06:50:33,980 WE'VE GOT OUR TRIBAL LEADERS AND 8053 06:50:33,980 --> 06:50:40,486 ELDERS AND BIOLOGISTS AND FOLKS 8054 06:50:40,486 --> 06:50:42,455 WHO DO BEHAVIORAL HEALTH AND THE 8055 06:50:42,455 --> 06:50:43,522 BIG RANGE. 8056 06:50:43,522 --> 06:50:45,925 WE LOOK FORWARD FOR YOUR 8057 06:50:45,925 --> 06:50:47,126 EXPERTISE TO GUIDE US AS WE 8058 06:50:47,126 --> 06:50:50,329 CONTINUE TO HAVE THIS UNFOLD. 8059 06:50:50,329 --> 06:50:53,933 ANY LAST THINGS YOU WANT TO SAY? 8060 06:50:53,933 --> 06:50:56,969 >> JUST A COUPLE OF REMARKS 8061 06:50:56,969 --> 06:51:00,439 ABOUT TOMORROW AND WHAT WE'LL BE 8062 06:51:00,439 --> 06:51:03,075 GETTING INTO. 8063 06:51:03,075 --> 06:51:04,844 TOMORROW WE'LL START WITH THE 8064 06:51:04,844 --> 06:51:08,414 BUS PICKING YOU UP AT 7:30 AND 8065 06:51:08,414 --> 06:51:11,650 PLAN TO START AT 9:00 OR A 8066 06:51:11,650 --> 06:51:13,185 LITTLE BIT EARLIER AND GIVE 8067 06:51:13,185 --> 06:51:14,153 OPENING REMARKS AND INSTRUCTIONS 8068 06:51:14,153 --> 06:51:21,694 AND TALK MORE IN DEPTH ABOUT THE 8069 06:51:21,694 --> 06:51:25,931 EXACT POLICY FRAMEWORK FOR AN 8070 06:51:25,931 --> 06:51:26,565 INDIGENOUS SOVEREIGNTY POLICY 8071 06:51:26,565 --> 06:51:29,668 AND HEARD COMMENTS TODAY AND WE 8072 06:51:29,668 --> 06:51:31,404 HAVE TO WRITE SOMETHING DOWN FOR 8073 06:51:31,404 --> 06:51:33,105 RESEARCHERS TO ABIDE BY AND 8074 06:51:33,105 --> 06:51:35,608 WOULD LOVE TO HAVE YOUR INPUT 8075 06:51:35,608 --> 06:51:41,047 AND EXPERTISE ON THAT. 8076 06:51:41,047 --> 06:51:43,349 THERE'S A LOT OF WIGGLE ROOM AND 8077 06:51:43,349 --> 06:51:45,184 NUANCE BUT WE NEED TO HAVE A 8078 06:51:45,184 --> 06:51:47,486 DOCUMENT. 8079 06:51:47,486 --> 06:51:49,188 NOT TO SAY THERE'S NOT WRIGGLE 8080 06:51:49,188 --> 06:51:51,390 ROOM OR OPTION TO ATTEND AND 8081 06:51:51,390 --> 06:51:53,025 CHANGE DOWN THE ROAD, THERE ARE, 8082 06:51:53,025 --> 06:51:56,195 BUT WANT TO DRAW ON ALL OF YOUR 8083 06:51:56,195 --> 06:51:56,462 EXPERTISE. 8084 06:51:56,462 --> 06:51:58,964 TOMORROW WE'LL BE FOCUSSED ON 8085 06:51:58,964 --> 06:51:59,999 DIRECT INPUT FROM THE POLICY 8086 06:51:59,999 --> 06:52:02,368 DRAWING ON THE CONFERENCES THAT 8087 06:52:02,368 --> 06:52:03,002 WE'VE HAD TODAY. 8088 06:52:03,002 --> 06:52:07,506 WE'RE GOING TO BREAK EVERYONE UP 8089 06:52:07,506 --> 06:52:09,742 INTO GROUPS AFTER THE INITIAL 8090 06:52:09,742 --> 06:52:10,910 DISCUSSION AND CHARGE YOU WITH 8091 06:52:10,910 --> 06:52:12,445 WORKING TOGETHER FOR ABOUT AN 8092 06:52:12,445 --> 06:52:14,080 HOUR WITH WRITING DOWN KEY 8093 06:52:14,080 --> 06:52:16,182 RECOMMENDATIONS YOU WOULD LIKE 8094 06:52:16,182 --> 06:52:17,716 TO GIVE TO THE NIH. 8095 06:52:17,716 --> 06:52:20,319 SO THINK ABOUT THOSE TONIGHT. 8096 06:52:20,319 --> 06:52:21,887 WE'LL SHOW YOU WHO YOUR GROUPS 8097 06:52:21,887 --> 06:52:23,289 ARE TO START TO KIND OF THINK 8098 06:52:23,289 --> 06:52:25,458 ABOUT WHO YOU WANT TO MAYBE 8099 06:52:25,458 --> 06:52:29,995 PARTNER UP WITH OR SIT WITH AT 8100 06:52:29,995 --> 06:52:30,229 DINNER. 8101 06:52:30,229 --> 06:52:33,466 AND WE LOOK FORWARD TO HEARING 8102 06:52:33,466 --> 06:52:34,200 FROM YOU TOMORROW. 8103 06:52:34,200 --> 06:52:35,201 WE'LL PROVIDE AN OPPORTUNITY FOR 8104 06:52:35,201 --> 06:52:37,369 EVERYONE TO REPORT OUT THEIR KEY 8105 06:52:37,369 --> 06:52:39,405 RECOMMENDATION. 8106 06:52:39,405 --> 06:52:41,707 WE HAVE A WRITER AND HAVE A 8107 06:52:41,707 --> 06:52:43,242 FINAL REPORT TO DISSEMINATE TO 8108 06:52:43,242 --> 06:52:44,610 EVERYONE, THE RECORDING OF 8109 06:52:44,610 --> 06:52:46,011 TODAY'S CONVERSATION WILL BE 8110 06:52:46,011 --> 06:52:46,645 ARCHIVED ON LINE. 8111 06:52:46,645 --> 06:52:51,183 IT TAKES ABOUT A WEAK TO GET THE 8112 06:52:51,183 --> 06:52:52,885 CLOSED CAPTIONING DONE BUT 8113 06:52:52,885 --> 06:52:54,086 ONLINE FOR LATER VIEWING IF 8114 06:52:54,086 --> 06:52:55,588 ANYBODY WANTS TO COME BACK OR 8115 06:52:55,588 --> 06:52:56,822 SHARE IT OUTSIDE, PLEASE DO. 8116 06:52:56,822 --> 06:53:00,726 IT'S AVAILABLE TO THE PUBLIC. 8117 06:53:00,726 --> 06:53:02,928 I ALSO WANT TO REMIND EVERYONE A 8118 06:53:02,928 --> 06:53:04,396 COMMENT MADE EARLIER TODAY THAT 8119 06:53:04,396 --> 06:53:06,699 WE HAVE COMPLICATED QUESTIONS. 8120 06:53:06,699 --> 06:53:09,802 WE ASKED ALL OF YOU TODAY. 8121 06:53:09,802 --> 06:53:12,438 IF YOU'RE THINKING ABOUT IT OR 8122 06:53:12,438 --> 06:53:13,906 SOMETHING YOU WISHED YOU'D SAID 8123 06:53:13,906 --> 06:53:16,308 OR COMMUNICATE FEEL FREE TO 8124 06:53:16,308 --> 06:53:17,877 E-MAIL ME YOUR ANSWERS. 8125 06:53:17,877 --> 06:53:20,412 WE'RE HAPPY TO TAKE THOSE IN 8126 06:53:20,412 --> 06:53:21,447 WRITING AS THE QUESTION COMES TO 8127 06:53:21,447 --> 06:53:23,716 MIND YOU WANT TO FURTHER 8128 06:53:23,716 --> 06:53:24,049 DISCUSS. 8129 06:53:24,049 --> 06:53:25,050 PLEASE REACH OUT TO US. 8130 06:53:25,050 --> 06:53:27,486 WE WANT TO CONTINUE THE 8131 06:53:27,486 --> 06:53:28,454 CONVERSATION. 8132 06:53:28,454 --> 06:53:33,626 WE'RE OPEN TO HOLDING ADDITIONAL 8133 06:53:33,626 --> 06:53:35,194 VIRTUAL MEETINGS WITH FOLKS WHO 8134 06:53:35,194 --> 06:53:36,028 WANT TO CONTINUE THE 8135 06:53:36,028 --> 06:53:36,996 CONVERSATION AS WE CONTINUE TO 8136 06:53:36,996 --> 06:53:38,664 WORK THROUGH THIS AS WELL. 8137 06:53:38,664 --> 06:53:40,966 OPEN TO YOUR INPUT HOW TO 8138 06:53:40,966 --> 06:53:41,200 PROCEED. 8139 06:53:41,200 --> 06:53:42,902 HERE'S YOUR GROUPS FOR TOMORROW. 8140 06:53:42,902 --> 06:53:48,407 TAKE A QUICK LOOK. 8141 06:53:48,407 --> 06:53:52,645 >> SCREEN SHOT. 8142 06:53:52,645 --> 06:53:54,713 >> I CAN ALSO SEND THIS OUT 8143 06:53:54,713 --> 06:54:04,857 TONIGHT. 8144 06:54:24,743 --> 06:54:25,511 ALL RIGHT. 8145 06:54:25,511 --> 06:54:30,149 >> GATHER ON THE STEPS TO GET A 8146 06:54:30,149 --> 06:54:35,321 QUICK PICTURE OR WAIT UNTIL 8147 06:54:35,321 --> 06:54:44,096 TOMORROW? 8148 06:54:44,096 --> 06:54:44,163 8149 06:54:45,464 --> 06:54:55,507 OKAY. 8150 06:54:59,178 --> 06:55:01,780 >> FEEL FREE TO LEAVE YOUR TENT 8151 06:55:01,780 --> 06:55:01,981 CARDS. 8152 06:55:01,981 --> 06:55:12,491 WE'LL USE THEM AGAIN TOMORROW.