1 00:00:14,882 --> 00:00:15,949 Hi, everyone. 2 00:00:15,949 --> 00:00:18,018 Yeah. It's been, 3 00:00:18,018 --> 00:00:20,254 Thank you so much for inviting me. 4 00:00:20,254 --> 00:00:22,966 This is always a fun time of the year 5 00:00:22,966 --> 00:00:24,725 when I get to speak to, 6 00:00:26,093 --> 00:00:29,396 the NIH and, folks, taking this course. 7 00:00:30,764 --> 00:00:33,767 So I wanted to start off by, 8 00:00:35,269 --> 00:00:38,338 acknowledging the traditional homelands, 9 00:00:38,338 --> 00:00:40,612 where I do my research at the University 10 00:00:40,612 --> 00:00:42,943 of Washington or University of Colorado. 11 00:00:43,977 --> 00:00:45,746 And Sheetz medical campus. 12 00:00:45,746 --> 00:00:48,556 We also have a downtown campus shown here in the 13 00:00:48,556 --> 00:00:49,082 picture. 14 00:00:49,316 --> 00:00:51,698 But these are the traditional homelands 15 00:00:51,698 --> 00:00:52,552 of the Apache 16 00:00:52,853 --> 00:00:55,956 Ute, Cheyenne, Comanche, and Arapaho tribes. 17 00:00:56,223 --> 00:01:00,360 And it's also home to many other indigenous peoples today. 18 00:01:02,095 --> 00:01:04,298 So today, I hope to relay 19 00:01:04,298 --> 00:01:08,035 the importance of thinking about diversity, 20 00:01:08,035 --> 00:01:11,271 equity and equality and health care research and, 21 00:01:12,406 --> 00:01:15,652 health, research and why it's imperative 22 00:01:15,652 --> 00:01:18,979 to engage communities in their research. 23 00:01:20,847 --> 00:01:21,782 First off, I'll 24 00:01:21,782 --> 00:01:25,819 contextualize my experiences with some of that, 25 00:01:25,819 --> 00:01:28,224 my journey in academia and motivations 26 00:01:28,224 --> 00:01:30,123 for doing the work that I do. 27 00:01:30,991 --> 00:01:33,794 I'll talk a little bit about indigenous ways of knowing 28 00:01:33,794 --> 00:01:36,095 and then my research and precision 29 00:01:36,095 --> 00:01:38,598 pharmacogenomics, as well as how I'm 30 00:01:38,932 --> 00:01:42,035 moving towards community based research in my work. 31 00:01:44,604 --> 00:01:47,774 So to start off, I grew up on the Navajo Nation, 32 00:01:47,774 --> 00:01:51,278 which is shown here in the middle 33 00:01:51,278 --> 00:01:55,349 of the four corners, or, so the Navajo Nation 34 00:01:55,349 --> 00:01:59,119 spans across Arizona, New Mexico and Utah. 35 00:01:59,786 --> 00:02:02,222 We have almost 500,000 36 00:02:02,222 --> 00:02:05,225 enrolled members in the Navajo tribe. 37 00:02:06,026 --> 00:02:08,257 And it's the largest tribal tribe, 38 00:02:08,257 --> 00:02:09,963 tribal land base as well. 39 00:02:10,197 --> 00:02:13,266 So this, black blob here 40 00:02:13,266 --> 00:02:16,269 is about the size of West Virginia. 41 00:02:17,304 --> 00:02:20,307 So I grew up here and, 42 00:02:20,674 --> 00:02:22,696 went to high school here, and all of 43 00:02:22,696 --> 00:02:25,112 my family still live on the Navajo Nation. 44 00:02:26,246 --> 00:02:27,547 But I also did my 45 00:02:27,547 --> 00:02:31,485 postdoc and my PhD at the University of Washington. 46 00:02:31,485 --> 00:02:34,121 So I spent quite a few years there. 47 00:02:34,121 --> 00:02:37,232 And I got my PhD in genome sciences, 48 00:02:37,232 --> 00:02:39,393 and then I did a postdoc 49 00:02:39,393 --> 00:02:42,881 with the Northwest Alaska pharmacogenomics Research 50 00:02:42,881 --> 00:02:43,497 Network, 51 00:02:44,297 --> 00:02:46,566 in which I had advisors 52 00:02:46,566 --> 00:02:49,569 both in pharmaceutics and bioethics. 53 00:02:49,836 --> 00:02:53,273 But what was really great about the NWA, PGR 54 00:02:53,273 --> 00:02:56,476 and is that they had a really diverse team, 55 00:02:56,476 --> 00:02:59,420 but they worked with tribal communities 56 00:02:59,420 --> 00:03:01,081 and were at its core, 57 00:03:01,081 --> 00:03:03,575 they were trying to do community engaged 58 00:03:03,575 --> 00:03:05,819 research, as well as thinking about 59 00:03:05,819 --> 00:03:08,855 the ethical and social implications 60 00:03:08,855 --> 00:03:11,858 of that research in those communities. 61 00:03:12,325 --> 00:03:15,865 So in 2019, I moved back to my beloved 62 00:03:15,865 --> 00:03:16,797 southwest 63 00:03:16,797 --> 00:03:18,885 and started my own research program 64 00:03:18,885 --> 00:03:20,734 at the University of Colorado. 65 00:03:21,601 --> 00:03:23,546 So I, I've always wanted to work with 66 00:03:23,546 --> 00:03:25,806 my own tribe and other indigenous peoples. 67 00:03:25,806 --> 00:03:30,775 And it's it's also, an ideal for many native elders and 68 00:03:30,775 --> 00:03:31,678 families. 69 00:03:31,678 --> 00:03:32,746 They always tell you, 70 00:03:32,746 --> 00:03:36,030 go and get your education and then come back and help your 71 00:03:36,030 --> 00:03:36,483 people. 72 00:03:36,483 --> 00:03:39,553 So I hope that the work that I'm doing 73 00:03:39,553 --> 00:03:42,344 now is affecting some of the work 74 00:03:42,344 --> 00:03:43,190 that I do 75 00:03:43,190 --> 00:03:46,359 with my own community, as well as other tribal nations. 76 00:03:47,627 --> 00:03:49,996 But, growing 77 00:03:49,996 --> 00:03:53,133 up, I did not know what research was. 78 00:03:53,133 --> 00:03:55,716 And it wasn't until I conducted my own research in 79 00:03:55,716 --> 00:03:56,336 high school 80 00:03:56,703 --> 00:04:00,978 that I realized what it was and how far it could take me in 81 00:04:00,978 --> 00:04:01,775 my career. 82 00:04:02,809 --> 00:04:05,712 And then it wasn't until I was probably a late 83 00:04:05,712 --> 00:04:08,715 undergraduate when I realized this could be a career for me. 84 00:04:09,216 --> 00:04:12,786 But it was really because of the influential, attentive, 85 00:04:12,786 --> 00:04:16,289 and supportive mentors and community 86 00:04:16,289 --> 00:04:19,326 and family and many diversity programs 87 00:04:19,326 --> 00:04:22,896 that I was a part of is that's why I'm here today. 88 00:04:23,096 --> 00:04:25,406 And some of these mentors were scientists, 89 00:04:25,406 --> 00:04:27,000 but also others were members 90 00:04:27,000 --> 00:04:29,686 of my family who really saw my potential 91 00:04:29,686 --> 00:04:32,305 and guided and supported me on onward. 92 00:04:32,305 --> 00:04:36,557 So I wholeheartedly believe that science is not a solitary 93 00:04:36,557 --> 00:04:37,144 effort, 94 00:04:37,144 --> 00:04:40,514 but is one informed by your communities. 95 00:04:42,449 --> 00:04:44,551 As I wanted to, 96 00:04:44,551 --> 00:04:46,953 think more about genomic research 97 00:04:46,953 --> 00:04:50,123 and move my research beyond genetic findings. 98 00:04:51,224 --> 00:04:53,193 I found that, 99 00:04:53,193 --> 00:04:55,272 there was a disconnect between genomic 100 00:04:55,272 --> 00:04:57,297 research and indigenous communities. 101 00:04:57,631 --> 00:05:00,929 I think many people think that Native Americans are 102 00:05:00,929 --> 00:05:01,835 anti-science, 103 00:05:01,835 --> 00:05:04,073 but really, we just want research 104 00:05:04,073 --> 00:05:06,039 to be done on our own terms. 105 00:05:06,406 --> 00:05:08,742 We have our own words for DNA. 106 00:05:08,742 --> 00:05:11,711 So in Navajo, it's called not at all. 107 00:05:11,711 --> 00:05:14,694 And we have our own ways of keeping track of our 108 00:05:14,694 --> 00:05:15,315 genealogy 109 00:05:15,315 --> 00:05:18,718 and social relationships and histories and family traits. 110 00:05:19,786 --> 00:05:22,835 We have complex relationships with our environment and 111 00:05:22,835 --> 00:05:23,456 ecologies, 112 00:05:23,456 --> 00:05:25,559 and really, we just want our families 113 00:05:25,559 --> 00:05:27,661 and future generations to be healthy 114 00:05:27,661 --> 00:05:31,017 to something that many other communities also 115 00:05:31,017 --> 00:05:31,464 feel. 116 00:05:32,532 --> 00:05:34,958 But when the genomic revelation started 117 00:05:34,958 --> 00:05:37,571 or a revolution started gaining momentum, 118 00:05:37,804 --> 00:05:41,841 indigenous peoples were hesitant to participate because of past 119 00:05:41,841 --> 00:05:44,328 historical abuse, research misconduct, 120 00:05:44,328 --> 00:05:46,880 and concerns about helicopter science. 121 00:05:47,847 --> 00:05:48,682 So this is 122 00:05:48,682 --> 00:05:51,188 one example shown here of the Havasupai 123 00:05:51,188 --> 00:05:52,152 tribal members 124 00:05:52,419 --> 00:05:56,122 learning that their DNA samples that were intended for diabetes 125 00:05:56,122 --> 00:05:58,565 research were instead used for to study 126 00:05:58,565 --> 00:06:00,694 schizophrenia and human migration 127 00:06:00,694 --> 00:06:03,230 research, things that they had not agreed to 128 00:06:03,230 --> 00:06:03,863 initially. 129 00:06:04,731 --> 00:06:08,401 So back in 2010, this was settled outside of 130 00:06:08,401 --> 00:06:08,902 court 131 00:06:08,902 --> 00:06:12,786 and the tribal members were able to receive their, 132 00:06:12,786 --> 00:06:13,874 samples back. 133 00:06:13,874 --> 00:06:17,077 But this has really affected that community. 134 00:06:17,077 --> 00:06:20,814 That community is still very, very distrustful of researchers 135 00:06:20,814 --> 00:06:23,880 coming into their community and taking samples and not 136 00:06:23,880 --> 00:06:24,618 coming back. 137 00:06:26,519 --> 00:06:29,522 So within my own tribal community, 138 00:06:31,458 --> 00:06:33,994 genetic research is actually not even allowed. 139 00:06:33,994 --> 00:06:37,269 So in back in 2002, right around the time 140 00:06:37,269 --> 00:06:39,266 I was starting, college, 141 00:06:39,633 --> 00:06:42,936 a moratorium or a ban on genetic research 142 00:06:42,936 --> 00:06:45,939 was put in place on the Navajo Nation. 143 00:06:46,172 --> 00:06:48,808 And this was because, 144 00:06:48,808 --> 00:06:51,711 at that time, there was a lot going on with, 145 00:06:53,113 --> 00:06:53,680 with different 146 00:06:53,680 --> 00:06:55,673 projects trying to obtain samples 147 00:06:55,673 --> 00:06:57,183 from indigenous peoples. 148 00:06:57,517 --> 00:07:01,020 But for the Navajo people, they consulted with their tribal 149 00:07:01,020 --> 00:07:01,554 leaders, 150 00:07:01,554 --> 00:07:03,797 their traditional healers, and also Navajo 151 00:07:03,797 --> 00:07:05,558 people with scientific training. 152 00:07:05,825 --> 00:07:07,494 They realized that the Navajo Nation 153 00:07:07,494 --> 00:07:10,497 lacked policies for genetic research protocols. 154 00:07:10,497 --> 00:07:13,267 And over 20 years later, this moratorium 155 00:07:13,267 --> 00:07:15,969 on genetic research is still in place. 156 00:07:16,403 --> 00:07:20,094 So I think that it's I think it's ironic, sometimes 157 00:07:20,094 --> 00:07:20,674 that my 158 00:07:20,674 --> 00:07:23,076 I received my PhD in genome sciences 159 00:07:23,076 --> 00:07:23,944 or genetics. 160 00:07:24,611 --> 00:07:26,896 But I'm not able to conduct any genetic 161 00:07:26,896 --> 00:07:29,182 research with my own tribal community. 162 00:07:29,516 --> 00:07:33,253 But I think it's precisely because of this lack of Navajo 163 00:07:33,520 --> 00:07:37,223 and other indigenous geneticist that I pursued this path. 164 00:07:38,091 --> 00:07:40,513 So in a recent article that my lab 165 00:07:40,513 --> 00:07:43,363 published, we looked at the literature. 166 00:07:43,363 --> 00:07:45,031 We did a literature review 167 00:07:45,031 --> 00:07:47,945 and we looked at studies that had been conducted in 168 00:07:47,945 --> 00:07:48,802 Navajo people. 169 00:07:49,502 --> 00:07:52,238 These are just a snapshot of some of the studies. 170 00:07:52,238 --> 00:07:55,903 And just from the titles, you know that there a little 171 00:07:55,903 --> 00:07:56,242 bit, 172 00:07:58,411 --> 00:07:59,813 might have some issues. 173 00:07:59,813 --> 00:08:02,224 So one of them was inbreeding coefficients 174 00:08:02,224 --> 00:08:03,717 in the Navajo population. 175 00:08:04,084 --> 00:08:06,135 Another was a study of blood groups 176 00:08:06,135 --> 00:08:08,421 among American Indians and the Navajo. 177 00:08:08,421 --> 00:08:10,800 But, for this study of the blood groups, 178 00:08:10,800 --> 00:08:13,059 a lot of those samples were collected 179 00:08:13,059 --> 00:08:15,380 from children who were in boarding schools 180 00:08:15,380 --> 00:08:16,596 on the Navajo Nation. 181 00:08:16,596 --> 00:08:20,633 So, and then this other study on colorectal cancer, 182 00:08:21,401 --> 00:08:23,887 the the study published very detailed 183 00:08:23,887 --> 00:08:26,373 pedigrees, and some of the community 184 00:08:26,373 --> 00:08:29,409 members had issues with those detailed pedigrees 185 00:08:29,676 --> 00:08:32,679 being published and made. 186 00:08:32,879 --> 00:08:35,348 And since these are isolated community 187 00:08:35,348 --> 00:08:38,518 is that had some issues. 188 00:08:38,518 --> 00:08:41,233 But we we reviewed over 79 publications 189 00:08:41,233 --> 00:08:42,555 with that involved 190 00:08:42,555 --> 00:08:45,358 Navajo people from the early 1900s 191 00:08:45,358 --> 00:08:46,760 and few studies. 192 00:08:46,760 --> 00:08:49,157 May mentioned obtaining tribal IRB 193 00:08:49,157 --> 00:08:49,863 approval. 194 00:08:49,863 --> 00:08:53,147 And then, while standards have changed, 195 00:08:53,147 --> 00:08:55,168 this reflects the trend 196 00:08:55,168 --> 00:08:57,681 of how few studies involved communities 197 00:08:57,681 --> 00:08:59,873 and respected tribal sovereignty. 198 00:09:01,608 --> 00:09:02,942 So, more 199 00:09:02,942 --> 00:09:06,546 broadly in American Indian Alaska Native communities. 200 00:09:06,780 --> 00:09:09,582 These are some concerns about participation. 201 00:09:09,582 --> 00:09:11,618 Participation and research. 202 00:09:11,618 --> 00:09:14,621 There are many cultural and ethical concerns. 203 00:09:14,821 --> 00:09:18,358 There's always, concerns about the lack of adequate 204 00:09:18,358 --> 00:09:21,361 community consultations. 205 00:09:21,361 --> 00:09:24,884 And specifically when we're in the genomic error, 206 00:09:24,884 --> 00:09:25,532 there's, 207 00:09:26,366 --> 00:09:28,802 concerns about long term data storage 208 00:09:28,802 --> 00:09:31,805 and biological samples stewardship. 209 00:09:33,473 --> 00:09:35,642 So as I continued my journey, 210 00:09:35,642 --> 00:09:39,312 I wanted to focus on questions that mattered to my community. 211 00:09:39,712 --> 00:09:42,376 Back when I started my postdoc, precision 212 00:09:42,376 --> 00:09:44,584 and precise medicine was really a 213 00:09:44,951 --> 00:09:49,189 a buzzword in the community, and I think it still, still is. 214 00:09:49,989 --> 00:09:52,169 I decided to focus on pharmacogenomics 215 00:09:52,169 --> 00:09:53,660 because I thought of that 216 00:09:53,660 --> 00:09:56,463 as sort of the foundation of precision medicine. 217 00:09:56,463 --> 00:09:59,159 And a lot of people thought that this was one of the low 218 00:09:59,159 --> 00:09:59,833 hanging fruit 219 00:09:59,833 --> 00:10:03,002 of how you could use genetics to inform 220 00:10:03,369 --> 00:10:06,673 drug, drug dosage and drug, 221 00:10:07,707 --> 00:10:10,510 which, prescriptions that you use. 222 00:10:10,510 --> 00:10:14,088 Also, I was I was drawn to this area because 223 00:10:14,088 --> 00:10:14,414 of, 224 00:10:15,815 --> 00:10:17,951 traditional medicines and herbal remedies 225 00:10:17,951 --> 00:10:20,487 that are still used in our communities 226 00:10:20,487 --> 00:10:20,954 today. 227 00:10:21,187 --> 00:10:24,779 And have informed a lot of the pharmaceutical 228 00:10:24,779 --> 00:10:25,258 drugs 229 00:10:25,258 --> 00:10:28,261 that has been created in modern times. 230 00:10:29,162 --> 00:10:32,132 But of course, as you go through, 231 00:10:32,332 --> 00:10:36,184 the Stem fields, there are definitely unequal, 232 00:10:36,184 --> 00:10:36,603 any, 233 00:10:37,203 --> 00:10:40,840 any quality inequalities that, you know, experience, 234 00:10:40,840 --> 00:10:43,254 especially coming from a tribal community 235 00:10:43,254 --> 00:10:43,843 and then, 236 00:10:44,611 --> 00:10:46,980 being in a large institution. 237 00:10:46,980 --> 00:10:50,340 Some of these included some sacrifices of being away 238 00:10:50,340 --> 00:10:51,050 from home, 239 00:10:51,251 --> 00:10:54,387 losing some of my language and not being able to, 240 00:10:54,654 --> 00:10:57,425 be a part of our traditional events 241 00:10:57,425 --> 00:10:58,691 and ceremonial, 242 00:11:00,059 --> 00:11:02,095 events that follow. 243 00:11:02,095 --> 00:11:04,284 There's a lot of self-doubt and imposter 244 00:11:04,284 --> 00:11:04,831 syndrome. 245 00:11:04,831 --> 00:11:07,934 Loneliness. And also, as I started getting, 246 00:11:08,968 --> 00:11:12,772 into my postdoctoral position and faculty positions, 247 00:11:12,772 --> 00:11:15,808 I realized there are not there are not equal networks. 248 00:11:16,376 --> 00:11:18,450 I did not have those established networks 249 00:11:18,450 --> 00:11:19,512 that a lot of those, 250 00:11:20,246 --> 00:11:22,682 have if you have family members 251 00:11:22,682 --> 00:11:25,652 who had gone through, 252 00:11:25,885 --> 00:11:28,421 higher education training before. 253 00:11:28,421 --> 00:11:32,814 So, a part of my motivations for my research program is really 254 00:11:32,814 --> 00:11:33,593 supporting 255 00:11:33,593 --> 00:11:36,811 equity and inclusion of diverse populations and genomic 256 00:11:36,811 --> 00:11:37,397 research. 257 00:11:37,397 --> 00:11:40,400 Also addressing health and health care disparities, 258 00:11:40,633 --> 00:11:42,911 and then enhancing ethical research 259 00:11:42,911 --> 00:11:44,604 with indigenous and other 260 00:11:44,604 --> 00:11:46,806 historically underrepresented communities. 261 00:11:46,806 --> 00:11:49,221 And I like to show this figure here 262 00:11:49,221 --> 00:11:49,842 because, 263 00:11:50,276 --> 00:11:53,379 this is the one of the Gwas monitor, so. 264 00:11:53,379 --> 00:11:56,249 Daly. I think this was from two years ago. 265 00:11:56,249 --> 00:11:59,652 So I have to update this, but it's it hasn't really 266 00:11:59,652 --> 00:12:00,253 changed. 267 00:12:00,520 --> 00:12:02,906 So if you look at this de la diversity 268 00:12:02,906 --> 00:12:03,723 monitor.com, 269 00:12:04,023 --> 00:12:07,694 you will see real time how many studies are involving 270 00:12:09,062 --> 00:12:10,730 other populations by 271 00:12:10,730 --> 00:12:14,567 far about 95% are European descent populations 272 00:12:14,567 --> 00:12:17,216 who are involved in these large scale 273 00:12:17,216 --> 00:12:18,504 genome, projects. 274 00:12:18,504 --> 00:12:22,075 And then the rest of the five, 4 to 5% 275 00:12:22,075 --> 00:12:24,661 are all of the other world populations, 276 00:12:24,661 --> 00:12:27,313 and, indigenous peoples aren't on here, 277 00:12:27,313 --> 00:12:30,383 but they're about .04 278 00:12:30,383 --> 00:12:33,386 or 5.05% representation. 279 00:12:35,388 --> 00:12:37,323 So that's why I have my lab 280 00:12:37,323 --> 00:12:40,313 and it's specifically focused on working with indigenous 281 00:12:40,313 --> 00:12:40,793 peoples. 282 00:12:41,494 --> 00:12:45,264 So one part of my lab does pharmacy genomics research. 283 00:12:45,264 --> 00:12:48,434 So we study the cytochrome P450 enzymes. 284 00:12:48,434 --> 00:12:49,602 And then we also work 285 00:12:49,602 --> 00:12:51,487 with tribal partners to determine 286 00:12:51,487 --> 00:12:53,373 what what they're interested in. 287 00:12:53,373 --> 00:12:56,376 So one of the areas that became, 288 00:12:56,943 --> 00:12:59,936 interesting to tribal partners, we're looking at nicotine 289 00:12:59,936 --> 00:13:00,513 metabolism 290 00:13:00,513 --> 00:13:04,017 and how we can use that to create personalized, 291 00:13:04,717 --> 00:13:07,703 pharmacotherapy for, people who wanted to stop 292 00:13:07,703 --> 00:13:08,287 smoking. 293 00:13:08,988 --> 00:13:11,815 The other aspect of my wet lab where understanding, trying to 294 00:13:11,815 --> 00:13:12,325 understand 295 00:13:12,325 --> 00:13:15,618 what these variants do in cell cultures 296 00:13:15,618 --> 00:13:16,462 and then, 297 00:13:17,130 --> 00:13:19,666 a part of my background is in evolutionary genomics. 298 00:13:19,666 --> 00:13:21,334 So I'm really interested in seeing, 299 00:13:22,301 --> 00:13:24,003 how these, 300 00:13:24,003 --> 00:13:27,006 enzymes have changed over time. 301 00:13:27,440 --> 00:13:29,475 And then the other part of my work, 302 00:13:29,475 --> 00:13:32,945 sort of arose out of my efforts to do, 303 00:13:33,513 --> 00:13:36,482 community, engage research with communities. 304 00:13:36,716 --> 00:13:38,887 Sometimes communities were not ready 305 00:13:38,887 --> 00:13:41,421 to jump into a full blown research study. 306 00:13:41,421 --> 00:13:44,604 So, we stepped back and then we decided 307 00:13:44,604 --> 00:13:46,726 to look using qualitative 308 00:13:46,726 --> 00:13:49,806 and mixed methods of research, we decided to actually take a 309 00:13:49,806 --> 00:13:50,063 look 310 00:13:50,063 --> 00:13:52,899 at what's the landscape like in the communities. 311 00:13:52,899 --> 00:13:55,908 So this is one of the projects that I'm doing with the Navajo 312 00:13:55,908 --> 00:13:56,302 Nation, 313 00:13:56,969 --> 00:13:59,257 where we are actually serving people about 314 00:13:59,257 --> 00:14:00,673 what did they think about 315 00:14:00,873 --> 00:14:01,808 genetic research? 316 00:14:01,808 --> 00:14:03,910 What do they think about the moratorium? 317 00:14:03,910 --> 00:14:06,020 Are they what are some big concerns 318 00:14:06,020 --> 00:14:07,346 in their communities? 319 00:14:07,647 --> 00:14:10,683 So I do this research with various communities 320 00:14:10,683 --> 00:14:13,653 who really want to take a step back and, 321 00:14:13,886 --> 00:14:16,635 talk, talk before you jump into the actual 322 00:14:16,635 --> 00:14:17,290 research. 323 00:14:17,857 --> 00:14:20,655 The other part of my work is looking at ancient DNA 324 00:14:20,655 --> 00:14:21,094 ethics, 325 00:14:21,094 --> 00:14:24,497 and then also mentoring, indigenous trainees 326 00:14:24,497 --> 00:14:27,500 through the singing program as well as the prime program. 327 00:14:28,234 --> 00:14:31,204 So I'm extremely thankful to all of my Chinese 328 00:14:31,204 --> 00:14:33,039 collaborators and tribal partners 329 00:14:33,039 --> 00:14:35,208 who really move this research forward. 330 00:14:36,509 --> 00:14:36,843 The other 331 00:14:36,843 --> 00:14:40,309 big part of my laboratory is bringing my culture into the 332 00:14:40,309 --> 00:14:40,613 lab. 333 00:14:40,613 --> 00:14:43,506 So this is, actual picture of my lab 334 00:14:43,506 --> 00:14:44,550 back in 2020 335 00:14:44,550 --> 00:14:47,754 when I, was able to move into the space. 336 00:14:48,654 --> 00:14:51,891 But we had a, traditional ceremony 337 00:14:51,891 --> 00:14:55,171 to open up the lab, before any samples were brought 338 00:14:55,171 --> 00:14:55,428 in. 339 00:14:55,762 --> 00:14:58,506 I also have a lot of indigenous trainees 340 00:14:58,506 --> 00:15:00,633 who, work in my lab and often, 341 00:15:01,267 --> 00:15:04,303 contact me to for training opportunities. 342 00:15:06,305 --> 00:15:08,141 But, I wanted to switch gears 343 00:15:08,141 --> 00:15:11,310 into this idea about, 344 00:15:11,310 --> 00:15:13,212 indigenous science. 345 00:15:13,212 --> 00:15:16,135 So indigenous people have always been 346 00:15:16,135 --> 00:15:17,083 scientists, 347 00:15:18,184 --> 00:15:21,888 from burning practices in some indigenous communities. 348 00:15:22,455 --> 00:15:26,425 A lot of the, vegetables that we have today are, 349 00:15:26,993 --> 00:15:30,163 were originally domesticated by indigenous peoples. 350 00:15:30,163 --> 00:15:32,501 And even though there was not the 351 00:15:32,501 --> 00:15:35,334 understanding of genetics as we have it 352 00:15:35,535 --> 00:15:38,661 now, there was also there was definitely 353 00:15:38,661 --> 00:15:41,240 an understanding of heritability 354 00:15:41,240 --> 00:15:44,487 and how you were able to maintain balance 355 00:15:44,487 --> 00:15:47,814 with the environment, but also cultivate, 356 00:15:48,781 --> 00:15:51,526 domestic products or products that people could 357 00:15:51,526 --> 00:15:51,818 eat. 358 00:15:51,818 --> 00:15:53,486 And there's. 359 00:15:53,486 --> 00:15:56,619 So within indigenous science, there are multiple ways of 360 00:15:56,619 --> 00:15:57,123 knowing. 361 00:15:57,890 --> 00:16:00,259 Sometimes people call this traditional knowledge 362 00:16:00,259 --> 00:16:03,429 traditional ecological knowledge or indigenous knowledge. 363 00:16:03,663 --> 00:16:06,325 Often these are passed on through oral 364 00:16:06,325 --> 00:16:07,867 or written knowledge. 365 00:16:08,401 --> 00:16:11,370 A lot of times it's orally transmitted. 366 00:16:11,971 --> 00:16:15,174 Ceremonial practices and beliefs and also 367 00:16:15,174 --> 00:16:18,084 general knowledge that is passed on from our 368 00:16:18,084 --> 00:16:18,811 ancestors. 369 00:16:19,512 --> 00:16:21,881 So recently. Well, not so recently. 370 00:16:21,881 --> 00:16:24,550 It's five years ago, but we, colleague and I 371 00:16:24,550 --> 00:16:25,218 published, 372 00:16:25,618 --> 00:16:28,044 an indigenous science special issue in 373 00:16:28,044 --> 00:16:30,790 human biology, where we highlight multiple 374 00:16:30,790 --> 00:16:33,591 indigenous authors who are incorporating 375 00:16:33,591 --> 00:16:35,761 indigenous science into their, 376 00:16:37,630 --> 00:16:38,931 research protocols. 377 00:16:38,931 --> 00:16:40,132 So take a look. 378 00:16:40,132 --> 00:16:43,135 I think it's freely available if people are interested. 379 00:16:43,870 --> 00:16:46,639 But moving into the work that I do. 380 00:16:46,639 --> 00:16:49,742 So within the United States, there are over 381 00:16:49,742 --> 00:16:53,646 574 federally recognized tribes. 382 00:16:53,946 --> 00:16:57,216 About 70 to 80% of these tribal members 383 00:16:57,216 --> 00:17:01,087 actually don't live in the rural tribal communities. 384 00:17:01,087 --> 00:17:02,755 They actually live in cities. 385 00:17:02,755 --> 00:17:06,392 So a lot of major cities Washington DC, Denver, 386 00:17:06,659 --> 00:17:08,743 Phoenix, a lot of these cities have 387 00:17:08,743 --> 00:17:09,695 native peoples. 388 00:17:10,563 --> 00:17:13,766 And just to go back to some of the ethical, 389 00:17:15,568 --> 00:17:17,069 regulations in place. 390 00:17:17,069 --> 00:17:19,234 So I'm sure many of you have heard of the common 391 00:17:19,234 --> 00:17:19,505 rule. 392 00:17:19,505 --> 00:17:21,779 So the common rule upholds tribal 393 00:17:21,779 --> 00:17:22,675 sovereignty. 394 00:17:22,675 --> 00:17:24,176 So what does that mean? 395 00:17:24,176 --> 00:17:28,080 That means that the, tribal sovereignty 396 00:17:28,080 --> 00:17:30,534 is extended to recognize American Indian 397 00:17:30,534 --> 00:17:32,251 Alaskan Native tribes. But, 398 00:17:33,252 --> 00:17:37,223 this the common rule upholds the right of authority of U.S. 399 00:17:37,223 --> 00:17:40,252 tribes to approve or disapprove of research in their 400 00:17:40,252 --> 00:17:40,893 community. 401 00:17:41,193 --> 00:17:44,263 So it is, legal, 402 00:17:44,263 --> 00:17:45,848 thing where you do have to consult 403 00:17:45,848 --> 00:17:46,966 with tribal communities 404 00:17:46,966 --> 00:17:49,343 if you're planning to do research 405 00:17:49,343 --> 00:17:50,136 with them. 406 00:17:50,136 --> 00:17:54,340 So within my field, for science and precision medicine, this is 407 00:17:54,340 --> 00:17:54,874 a field 408 00:17:54,874 --> 00:17:58,010 that tries to use genetic information, environment 409 00:17:58,010 --> 00:18:01,047 and lifestyle to, 410 00:18:01,047 --> 00:18:04,050 aid in the diagnosis, prevention and treatment of diseases. 411 00:18:04,984 --> 00:18:07,987 And I'm sure many of you have heard of, 412 00:18:09,388 --> 00:18:12,248 some of these efforts, the all of us is one of the 413 00:18:12,248 --> 00:18:12,591 most, 414 00:18:12,858 --> 00:18:14,819 well known efforts, the Precision 415 00:18:14,819 --> 00:18:17,196 Medicine Initiative, which was started, 416 00:18:17,563 --> 00:18:20,342 or announced by, President Barack Obama 417 00:18:20,342 --> 00:18:21,767 a couple years ago. 418 00:18:21,767 --> 00:18:24,173 And then now there are other, biobanks 419 00:18:24,173 --> 00:18:26,706 that are trying to do something similar 420 00:18:26,706 --> 00:18:29,099 where they're collecting, samples 421 00:18:29,099 --> 00:18:31,711 and hoping to use this information, 422 00:18:31,711 --> 00:18:34,534 coupled with electronic health medical 423 00:18:34,534 --> 00:18:37,283 records and very detailed surveys to 424 00:18:38,250 --> 00:18:39,218 make this, 425 00:18:39,218 --> 00:18:41,424 information available to researchers 426 00:18:41,424 --> 00:18:42,588 who want to study, 427 00:18:43,322 --> 00:18:46,325 different diseases and health conditions. 428 00:18:46,592 --> 00:18:50,763 So within pharmacogenomics, their this field 429 00:18:50,763 --> 00:18:52,943 aims to establish how genes affect 430 00:18:52,943 --> 00:18:54,867 a person's response to drugs. 431 00:18:55,167 --> 00:18:56,969 And pharmacogenomics guides 432 00:18:56,969 --> 00:19:00,740 the selection of the best drug and dose for an individual. 433 00:19:00,740 --> 00:19:04,010 And it's predicted to reduce the cost of adverse 434 00:19:04,010 --> 00:19:06,612 drug reactions, which is actually quite 435 00:19:06,612 --> 00:19:07,813 expensive in the, 436 00:19:08,914 --> 00:19:12,084 right now in health care. 437 00:19:12,084 --> 00:19:14,253 So if I go to this cartoon 438 00:19:14,253 --> 00:19:17,223 and take a diverse population here, 439 00:19:17,456 --> 00:19:19,421 sometimes if you treat a certain 440 00:19:19,421 --> 00:19:20,526 population with a 441 00:19:20,960 --> 00:19:23,314 particular medication, the vast majority 442 00:19:23,314 --> 00:19:25,197 will have a favorable response. 443 00:19:25,197 --> 00:19:27,461 So you're able to treat these people 444 00:19:27,461 --> 00:19:30,102 in blue with a conventional drug or dose. 445 00:19:30,369 --> 00:19:33,388 But there are other people who, because of their genetic 446 00:19:33,388 --> 00:19:33,873 profile, 447 00:19:34,173 --> 00:19:37,309 might not respond or they might have an adverse 448 00:19:37,309 --> 00:19:37,843 effect. 449 00:19:37,843 --> 00:19:40,079 And with these people who are in red 450 00:19:40,079 --> 00:19:42,031 and purple, you will want to treat 451 00:19:42,031 --> 00:19:43,983 with an alternative drug or dose. 452 00:19:44,383 --> 00:19:48,421 But getting to this, population in the pink 453 00:19:48,421 --> 00:19:50,532 and red is actually a really hard process, 454 00:19:50,532 --> 00:19:52,191 because you have to have genetic 455 00:19:52,191 --> 00:19:54,776 information available, you have to have 456 00:19:54,776 --> 00:19:57,229 evidence behind the drug gene pairs, 457 00:19:57,229 --> 00:20:00,353 and then you have to have a way to implement this in the 458 00:20:00,353 --> 00:20:00,966 community. 459 00:20:00,966 --> 00:20:02,401 So that's actually one of the 460 00:20:02,401 --> 00:20:04,390 hardest things that was substrate 461 00:20:04,390 --> 00:20:06,439 trying to do in precision health. 462 00:20:07,440 --> 00:20:09,141 So one of the enzymes that I said 463 00:20:09,141 --> 00:20:11,195 are a family of enzymes that I study 464 00:20:11,195 --> 00:20:13,079 are the cytochrome P450 enzymes. 465 00:20:13,479 --> 00:20:16,582 These enzymes are involved in drug metabolism. 466 00:20:16,582 --> 00:20:20,853 There are 57, enzymes in the human body 467 00:20:20,853 --> 00:20:23,889 that are all involved in some type of drug metabolism. 468 00:20:23,889 --> 00:20:28,761 So, about, 75% of the drugs 469 00:20:28,761 --> 00:20:32,013 that people take today are metabolized by this 470 00:20:32,013 --> 00:20:32,932 gene family. 471 00:20:33,999 --> 00:20:36,402 And then in terms of human genetic variation, 472 00:20:36,402 --> 00:20:39,405 we look at single nucleotide variants. 473 00:20:39,705 --> 00:20:43,087 Insertions and deletions are a big part of 474 00:20:43,087 --> 00:20:43,409 why 475 00:20:43,409 --> 00:20:45,656 we see some genetic variants or variants 476 00:20:45,656 --> 00:20:47,847 and how people respond to medications. 477 00:20:48,047 --> 00:20:49,548 And then interestingly, 478 00:20:49,548 --> 00:20:51,362 there are also copy number variations 479 00:20:51,362 --> 00:20:52,685 and structural variations. 480 00:20:52,685 --> 00:20:55,688 So with one of the more common 481 00:20:56,055 --> 00:20:58,545 enzyme Cyp2D6, we see a lot of non 482 00:20:58,545 --> 00:21:01,694 allelic homologous recombination occurring 483 00:21:01,694 --> 00:21:04,036 where you might get full gene deletions 484 00:21:04,036 --> 00:21:05,598 or you might get hybrids. 485 00:21:05,598 --> 00:21:08,167 And so the really interesting family to study. 486 00:21:09,535 --> 00:21:12,671 So in terms of the actual gene. 487 00:21:12,671 --> 00:21:15,207 So this is just an example of Cyp2D6. 488 00:21:15,207 --> 00:21:18,077 I'm not going to go in depth, but it's a gene cartoon. 489 00:21:18,077 --> 00:21:20,511 But with each and with different enzymes 490 00:21:20,511 --> 00:21:22,214 or with different variants. 491 00:21:22,214 --> 00:21:23,816 So this is called Cyp2D6. 492 00:21:23,816 --> 00:21:26,669 Start to these nucleotide changes 493 00:21:26,669 --> 00:21:29,522 will cause an amino acid change. 494 00:21:29,522 --> 00:21:32,758 And these they might cause a change in enzyme activity. 495 00:21:32,758 --> 00:21:34,827 So this one doesn't really change it. 496 00:21:34,827 --> 00:21:38,597 But if we go back to this star ten variant, it decreased this 497 00:21:38,597 --> 00:21:41,432 enzyme function, which has implications 498 00:21:41,432 --> 00:21:43,903 for the dosage of the medications 499 00:21:43,903 --> 00:21:46,415 or medicines that are metabolized by this 500 00:21:46,415 --> 00:21:46,906 enzyme. 501 00:21:48,174 --> 00:21:50,409 So just a big picture. 502 00:21:50,409 --> 00:21:53,879 And then when we think about the applicability 503 00:21:53,879 --> 00:21:58,117 of pharmacokinetic information, I wanted to go to this study 504 00:21:58,117 --> 00:22:01,682 that was published, a couple years ago where they 505 00:22:01,682 --> 00:22:02,555 did use it. 506 00:22:02,555 --> 00:22:06,125 Pharmacokinetic algorithm based on two genes, 507 00:22:06,826 --> 00:22:09,895 frequency one and 6 to 9. 508 00:22:09,895 --> 00:22:12,364 And then they looked at people's genotype status, 509 00:22:12,364 --> 00:22:15,534 and then they compared that to standard clinical care. 510 00:22:15,835 --> 00:22:18,555 They did this in two cohorts that you pack 511 00:22:18,555 --> 00:22:20,239 and their current cohorts 512 00:22:20,839 --> 00:22:23,275 for one of the groups, they found that there was 513 00:22:23,275 --> 00:22:26,312 a benefit for genotype guided warfarin dosing. 514 00:22:26,312 --> 00:22:29,782 And warfarin is a blood thinner that is commonly prescribed, 515 00:22:30,182 --> 00:22:33,052 also known as treatment in So they found that 516 00:22:33,052 --> 00:22:36,473 this genotype guided care was actually beneficial for 517 00:22:36,473 --> 00:22:36,989 people. 518 00:22:37,323 --> 00:22:39,304 And then for Co-Lab, they actually found 519 00:22:39,304 --> 00:22:40,593 no significant difference 520 00:22:40,593 --> 00:22:41,560 between the groups. 521 00:22:41,560 --> 00:22:45,231 And why do you think we have these conflicting results? 522 00:22:46,599 --> 00:22:48,133 Well, when you look at the 523 00:22:48,133 --> 00:22:50,720 composition of the cohorts, that you pack 524 00:22:50,720 --> 00:22:52,738 was primarily European descent. 525 00:22:53,072 --> 00:22:56,936 Koragg actually had 27% African-American, 526 00:22:56,936 --> 00:22:58,444 representation. 527 00:22:59,378 --> 00:23:01,480 And it is well known that in this 528 00:23:01,480 --> 00:23:04,683 ship, 29 gene, African-Americans 529 00:23:04,683 --> 00:23:06,859 have lower frequency of the two variants 530 00:23:06,859 --> 00:23:08,654 that were put in this algorithm. 531 00:23:09,288 --> 00:23:11,657 And, none of the other 532 00:23:11,657 --> 00:23:14,455 29 alleles were considered in this 533 00:23:14,455 --> 00:23:15,361 algorithm. 534 00:23:15,361 --> 00:23:19,031 So it was excluding potentially important 535 00:23:19,031 --> 00:23:22,201 variants, for a specific subgroup. 536 00:23:22,801 --> 00:23:25,168 And so this is a part of the reason 537 00:23:25,168 --> 00:23:27,873 why it's so important that we, look at, 538 00:23:28,607 --> 00:23:31,610 characterize variation in different populations, 539 00:23:32,878 --> 00:23:36,023 potentially clinically, there's the, potential for 540 00:23:36,023 --> 00:23:36,715 phenotypic 541 00:23:36,715 --> 00:23:38,851 mis classification. 542 00:23:38,851 --> 00:23:42,888 This will end up contributing to, disparities. 543 00:23:42,888 --> 00:23:45,035 And then there's missed opportunities 544 00:23:45,035 --> 00:23:46,892 for optimizing care for people. 545 00:23:47,726 --> 00:23:51,930 And the other part of my work is just interested. 546 00:23:52,164 --> 00:23:56,101 It's interesting to look at, why we have the variation we do. 547 00:23:56,468 --> 00:23:58,370 So this is just looking at, 548 00:23:59,471 --> 00:24:01,573 populations and Oceana. 549 00:24:01,573 --> 00:24:03,900 So looking at Polynesia, Melanesian, 550 00:24:03,900 --> 00:24:05,644 Micronesia, and different, 551 00:24:06,312 --> 00:24:09,181 geographic regions and ethnic ethnic groups, 552 00:24:09,181 --> 00:24:12,818 but it's any, these for this, 553 00:24:13,252 --> 00:24:16,255 2019 for metabolized status. 554 00:24:16,889 --> 00:24:21,827 It varies really dramatically from like 71% in certain groups 555 00:24:21,827 --> 00:24:25,998 to 8 or 7% in other groups. 556 00:24:25,998 --> 00:24:28,941 And a lot of this is driven by the founder 557 00:24:28,941 --> 00:24:29,501 effect. 558 00:24:29,501 --> 00:24:32,504 So small populations, 559 00:24:32,938 --> 00:24:34,807 keeping or 560 00:24:34,807 --> 00:24:37,142 in small populations, some of the variance. 561 00:24:37,142 --> 00:24:39,257 Well, there will be a loss of genetic 562 00:24:39,257 --> 00:24:41,714 variants that occurs from a new population 563 00:24:41,714 --> 00:24:43,841 being established from a smaller number 564 00:24:43,841 --> 00:24:45,751 of people, or selective pressures. 565 00:24:45,751 --> 00:24:47,763 There might be things in the environment 566 00:24:47,763 --> 00:24:49,221 that are being selected for, 567 00:24:49,855 --> 00:24:52,291 there might be geographic barriers as well. 568 00:24:52,291 --> 00:24:54,660 And then genetic drift is just, 569 00:24:54,660 --> 00:24:58,664 when nonrandom drift occurs due to small population size. 570 00:24:58,664 --> 00:25:01,303 So I think that we see this all over 571 00:25:01,303 --> 00:25:04,236 the world with these of set of enzymes. 572 00:25:04,236 --> 00:25:06,438 And it's really interesting, 573 00:25:06,438 --> 00:25:08,883 from my perspective, to look at why we see these 574 00:25:08,883 --> 00:25:09,341 changes. 575 00:25:09,341 --> 00:25:12,219 Are they cause is there a selective advantage 576 00:25:12,219 --> 00:25:12,411 or 577 00:25:13,712 --> 00:25:16,815 is there, our care, 578 00:25:16,815 --> 00:25:18,150 genomes that are involved. 579 00:25:18,150 --> 00:25:21,113 So one of the, another paper that I'm not going to talk about 580 00:25:21,113 --> 00:25:21,453 today, 581 00:25:21,453 --> 00:25:24,204 we looked at these variance in Neanderthal 582 00:25:24,204 --> 00:25:26,759 individuals and Denisovan individuals. 583 00:25:26,759 --> 00:25:28,967 And we were able to see that some of that 584 00:25:28,967 --> 00:25:31,230 variation is shared from a long time ago. 585 00:25:31,230 --> 00:25:34,333 Why why is this variation staying in the population? 586 00:25:35,467 --> 00:25:37,736 But so this is just an example. 587 00:25:37,736 --> 00:25:40,172 But and I think 588 00:25:40,172 --> 00:25:43,238 that a lot of the work that I have done 589 00:25:43,238 --> 00:25:44,810 and have been doing 590 00:25:44,810 --> 00:25:47,627 with communities is was really a call to action 591 00:25:47,627 --> 00:25:48,046 to me. 592 00:25:48,614 --> 00:25:51,683 There is a definite bias in who is represented 593 00:25:51,683 --> 00:25:54,686 in genomic and pharmacodynamic research. 594 00:25:55,354 --> 00:25:59,591 There is a shocking lack of indigenous PhD 595 00:26:00,426 --> 00:26:03,662 or principal investigators in the biomedical sciences. 596 00:26:04,329 --> 00:26:07,032 Currently, there are very few 597 00:26:07,032 --> 00:26:10,801 principal investigators who have research labs, much 598 00:26:10,801 --> 00:26:11,236 less, 599 00:26:11,603 --> 00:26:14,629 wet labs, and are able to do some of this work with tribal 600 00:26:14,629 --> 00:26:15,307 communities. 601 00:26:16,141 --> 00:26:17,342 So it really became, 602 00:26:19,878 --> 00:26:20,879 a call or 603 00:26:20,879 --> 00:26:23,882 a realization that we, I have to try to increase 604 00:26:23,882 --> 00:26:25,749 the number of indigenous scholars 605 00:26:25,749 --> 00:26:27,219 in the genomic workforce. 606 00:26:27,219 --> 00:26:30,756 And then, one way to do this is working with communities 607 00:26:30,756 --> 00:26:33,826 as partners, but also involving more 608 00:26:33,826 --> 00:26:36,695 of the communities in research. 609 00:26:36,695 --> 00:26:39,698 In the actual can, 610 00:26:39,998 --> 00:26:42,901 start or doing the research. 611 00:26:42,901 --> 00:26:45,504 So, now I'm going to switch gears 612 00:26:45,504 --> 00:26:47,382 into some of the ethical research 613 00:26:47,382 --> 00:26:49,374 approaches that I think of as I do 614 00:26:49,374 --> 00:26:52,344 my research and I do this, I go through this process 615 00:26:52,344 --> 00:26:55,247 with every project that I do and throughout the research 616 00:26:55,247 --> 00:26:55,714 projects 617 00:26:55,714 --> 00:26:59,384 I project, I also check myself and think about these questions. 618 00:26:59,384 --> 00:27:00,919 Am I doing this? 619 00:27:00,919 --> 00:27:02,054 Should I have done this? 620 00:27:02,054 --> 00:27:03,789 How can I do it better? 621 00:27:03,789 --> 00:27:07,915 So I think when we think about what it means to be an ethical 622 00:27:07,915 --> 00:27:08,727 researcher, 623 00:27:09,127 --> 00:27:12,264 what situates our ethical norms and beliefs? 624 00:27:13,432 --> 00:27:14,800 I think the notions of 625 00:27:14,800 --> 00:27:18,136 good and bad vary across communities. 626 00:27:18,470 --> 00:27:20,783 Bioethics is a study of ethics and 627 00:27:20,783 --> 00:27:23,709 medicine and research and often guidelines 628 00:27:23,709 --> 00:27:26,979 and best practices are needed to ensure that 629 00:27:26,979 --> 00:27:29,982 minimum standards are implemented. 630 00:27:30,182 --> 00:27:33,151 So I won't talk a lot about this work. 631 00:27:33,151 --> 00:27:35,105 So I do research with contemporary 632 00:27:35,105 --> 00:27:36,255 indigenous peoples. 633 00:27:36,255 --> 00:27:39,258 I also do research involving ancestors. 634 00:27:39,925 --> 00:27:42,728 Some of the papers that I shared, will 635 00:27:42,728 --> 00:27:46,689 give you more, ideas about what that means, what it 636 00:27:46,689 --> 00:27:47,232 means. 637 00:27:47,232 --> 00:27:49,501 But, either 638 00:27:49,501 --> 00:27:51,265 whether I'm working with contemporary 639 00:27:51,265 --> 00:27:52,170 indigenous peoples 640 00:27:52,170 --> 00:27:54,688 or ancestors, a lot of the questions that I 641 00:27:54,688 --> 00:27:55,274 think of, 642 00:27:56,041 --> 00:27:58,050 kind of how I approach my research 643 00:27:58,050 --> 00:27:58,877 are the same. 644 00:27:58,877 --> 00:28:01,397 So I really love this quote by Doctor 645 00:28:01,397 --> 00:28:02,214 Kim Tolman. 646 00:28:03,348 --> 00:28:05,608 If you're going to work with indigenous 647 00:28:05,608 --> 00:28:07,519 communities, you have, genetics. 648 00:28:07,519 --> 00:28:10,589 You have to be willing to make lifelong relationships. 649 00:28:12,858 --> 00:28:13,959 So CBR, 650 00:28:13,959 --> 00:28:18,096 CBR is community based participatory research. 651 00:28:18,096 --> 00:28:21,133 It's a collaborative, collaborative approach 652 00:28:21,133 --> 00:28:24,136 to research that involves 653 00:28:25,571 --> 00:28:27,873 community partners in the research process, 654 00:28:27,873 --> 00:28:31,610 and it recognizes the strengths that each brings. 655 00:28:33,378 --> 00:28:35,314 So community research 656 00:28:35,314 --> 00:28:37,719 begins with a research topic of importance 657 00:28:37,719 --> 00:28:38,750 to the community, 658 00:28:38,951 --> 00:28:41,122 with the aim of combining knowledge 659 00:28:41,122 --> 00:28:42,921 and action for social change 660 00:28:42,921 --> 00:28:45,363 to improve community health and eliminate health 661 00:28:45,363 --> 00:28:46,024 disparities. 662 00:28:48,393 --> 00:28:51,229 Sorry, I keep pressing the wrong button. 663 00:28:51,229 --> 00:28:53,865 So I think one thing that I love 664 00:28:53,865 --> 00:28:58,036 everyone to think about is what would your study look 665 00:28:58,036 --> 00:29:01,682 like when community is involved, or what does your study look 666 00:29:01,682 --> 00:29:02,040 like? 667 00:29:02,374 --> 00:29:04,416 And this can be whatever you're setting, 668 00:29:04,416 --> 00:29:06,612 if it's public health, if it's qualitative 669 00:29:06,612 --> 00:29:08,422 or if you're doing genetic research, 670 00:29:08,422 --> 00:29:10,082 how would it look if you involve 671 00:29:10,482 --> 00:29:12,084 community members? 672 00:29:14,453 --> 00:29:16,622 So recently, 673 00:29:16,622 --> 00:29:19,708 there have been many community specific research ethics 674 00:29:19,708 --> 00:29:20,325 guidelines 675 00:29:20,325 --> 00:29:24,696 that have come out, these this is a little bit older, 676 00:29:24,696 --> 00:29:26,823 but these are a couple that I like 677 00:29:26,823 --> 00:29:27,699 to highlight. 678 00:29:28,200 --> 00:29:31,016 Actually Africa has a ethics and governance 679 00:29:31,016 --> 00:29:31,737 framework. 680 00:29:32,871 --> 00:29:35,075 You know, is a really great example 681 00:29:35,075 --> 00:29:37,342 of a guidelines that were produced, 682 00:29:37,609 --> 00:29:42,414 created and made by Maori, individuals. 683 00:29:42,748 --> 00:29:46,318 So it really breaks down what genomic research 684 00:29:46,318 --> 00:29:49,321 looks like from the Maori perspective. 685 00:29:49,521 --> 00:29:52,190 And then this other publication, my colleagues 686 00:29:52,190 --> 00:29:55,961 and I published back in 2018, it's still highly cited. 687 00:29:55,961 --> 00:29:58,093 So I'm still going to talk about this 688 00:29:58,093 --> 00:29:58,497 today. 689 00:29:58,497 --> 00:30:02,267 But, in this framework, we, lay out, 690 00:30:03,135 --> 00:30:05,437 a couple of principles, six principles 691 00:30:05,437 --> 00:30:08,640 that, anyone can use in their research. 692 00:30:08,907 --> 00:30:11,810 And I'll go through this a little bit more, after 693 00:30:11,810 --> 00:30:14,508 I highlight some of the other upcoming 694 00:30:14,508 --> 00:30:15,147 studies. 695 00:30:15,781 --> 00:30:17,616 And then recently there's been a lot of, 696 00:30:19,051 --> 00:30:19,851 work done 697 00:30:19,851 --> 00:30:23,188 about indigenous data sovereignty and governance, 698 00:30:23,889 --> 00:30:26,892 particularly in genomic research and precision medicine. 699 00:30:28,260 --> 00:30:30,576 One of the principles that came out 700 00:30:30,576 --> 00:30:32,297 were the care principles. 701 00:30:32,297 --> 00:30:37,119 So this is collection, ownership and application of data and 702 00:30:37,119 --> 00:30:38,003 specimens. 703 00:30:38,270 --> 00:30:40,167 So the care principles for indigenous 704 00:30:40,167 --> 00:30:41,039 data governance, 705 00:30:41,039 --> 00:30:43,141 that's a really great paper to read. 706 00:30:43,141 --> 00:30:46,889 And there is I'm not sure if folks have heard of the fair 707 00:30:46,889 --> 00:30:47,612 principles 708 00:30:47,612 --> 00:30:49,662 which are about data stewardship, 709 00:30:49,662 --> 00:30:52,084 but there's a paper that links to care 710 00:30:52,084 --> 00:30:55,053 and fair principles together, which I find really great. 711 00:30:55,287 --> 00:30:57,886 And then there's also other studies 712 00:30:57,886 --> 00:30:59,891 that think of DNA, online, 713 00:31:00,826 --> 00:31:03,662 for in relation to data stewardship. 714 00:31:03,662 --> 00:31:08,266 So the, from Laura Harper's group, and Canada. 715 00:31:09,201 --> 00:31:12,104 But I also wanted to highlight, the paper 716 00:31:12,104 --> 00:31:15,841 that my and my colleagues and I were able to put together. 717 00:31:16,208 --> 00:31:19,267 So with this paper, we like to start from the 718 00:31:19,267 --> 00:31:19,811 middle, 719 00:31:20,378 --> 00:31:22,599 so understanding tribal sovereignty 720 00:31:22,599 --> 00:31:24,249 and research regulations. 721 00:31:24,249 --> 00:31:26,802 But the communities that you're working with before 722 00:31:26,802 --> 00:31:27,252 starting 723 00:31:27,452 --> 00:31:30,789 and then going outwards, to engaging the community 724 00:31:31,256 --> 00:31:34,292 and then making sure that you're culturally competent 725 00:31:34,292 --> 00:31:38,530 and then improving transparency in everything that you're doing. 726 00:31:38,530 --> 00:31:40,537 Not only that starting the study, 727 00:31:40,537 --> 00:31:42,300 but in your informed consent 728 00:31:42,300 --> 00:31:44,582 and study documents and then supporting 729 00:31:44,582 --> 00:31:47,038 capacity building within the communities, 730 00:31:47,038 --> 00:31:49,257 so involving members of the community 731 00:31:49,257 --> 00:31:51,176 and then distributing knowledge 732 00:31:51,176 --> 00:31:52,811 in different ways. 733 00:31:52,811 --> 00:31:54,579 And then throughout we have these 734 00:31:54,579 --> 00:31:56,348 principles of respect to equity, 735 00:31:57,449 --> 00:32:00,452 beneficence and reciprocity. 736 00:32:00,986 --> 00:32:02,740 So with this, I'm just going to start from the 737 00:32:02,740 --> 00:32:03,121 beginning 738 00:32:03,121 --> 00:32:06,291 and tell people how I approach some of these research. 739 00:32:06,291 --> 00:32:09,761 So in acknowledging sovereignty and research relations, 740 00:32:11,263 --> 00:32:13,665 we're we're asking that 741 00:32:13,665 --> 00:32:16,303 both tribal groups and individuals 742 00:32:16,303 --> 00:32:17,002 consent. 743 00:32:18,203 --> 00:32:19,796 Also, if you're working with urban 744 00:32:19,796 --> 00:32:20,405 populations, 745 00:32:20,405 --> 00:32:22,976 it becomes a little more, a little harder 746 00:32:22,976 --> 00:32:25,610 because often there's not a single entity 747 00:32:25,610 --> 00:32:29,414 that, can approve or disapprove of a study. 748 00:32:30,115 --> 00:32:32,517 For for example, I'm going to highlight 749 00:32:32,517 --> 00:32:35,520 the Pharmacogenomics Research Network. 750 00:32:35,887 --> 00:32:38,323 So within this, partnership, 751 00:32:38,323 --> 00:32:41,326 they had three tribal partners, listed here. 752 00:32:41,326 --> 00:32:45,100 And then with the oversight of approval process for every 753 00:32:45,100 --> 00:32:45,497 study 754 00:32:45,497 --> 00:32:48,049 that was done as a part of this larger 755 00:32:48,049 --> 00:32:50,802 grant, they went through the Alaska area 756 00:32:50,802 --> 00:32:53,082 IRB and then the oversight committee 757 00:32:53,082 --> 00:32:54,539 at Central Foundation, 758 00:32:54,840 --> 00:32:58,076 and then for the Wiki Health Corporation. 759 00:32:58,343 --> 00:33:00,761 They went through multiple levels of 760 00:33:00,761 --> 00:33:03,648 review before, and this was for the study, 761 00:33:03,648 --> 00:33:07,085 but also for any publications or presentations that happened. 762 00:33:07,419 --> 00:33:09,638 And then same with the Salish and Kiwi 763 00:33:09,638 --> 00:33:10,689 tribe in Montana. 764 00:33:11,089 --> 00:33:13,025 There were multiple levels of review 765 00:33:13,025 --> 00:33:14,693 from the community before this 766 00:33:14,893 --> 00:33:16,728 ever got approved or started. 767 00:33:18,163 --> 00:33:21,166 And then for, community engagement. 768 00:33:21,466 --> 00:33:23,606 This is really, talking about building 769 00:33:23,606 --> 00:33:24,169 long term 770 00:33:24,169 --> 00:33:26,821 relationships and having some type of 771 00:33:26,821 --> 00:33:28,039 engagement plan. 772 00:33:28,340 --> 00:33:31,792 One really good way to do this is to have, 773 00:33:31,792 --> 00:33:34,012 community advisory groups. 774 00:33:34,012 --> 00:33:36,919 So, and all of most of the studies that I 775 00:33:36,919 --> 00:33:39,684 do, I have a community advisory group. 776 00:33:39,684 --> 00:33:43,464 This can be anywhere from five people to, 777 00:33:43,464 --> 00:33:45,123 one of my groups. 778 00:33:45,123 --> 00:33:48,627 We have 30 community members in that advisory group. 779 00:33:48,627 --> 00:33:52,318 So, I think it just depends on what, 780 00:33:52,318 --> 00:33:54,266 level of interest. 781 00:33:54,266 --> 00:33:57,269 And, if you're able to, 782 00:33:58,670 --> 00:34:01,206 organize folks, but often 783 00:34:01,206 --> 00:34:03,622 the community advisory group meetings 784 00:34:03,622 --> 00:34:05,777 are the, the best part of my job 785 00:34:05,777 --> 00:34:09,214 because I get to connect with communities, learn 786 00:34:09,214 --> 00:34:12,217 and talk about research together, and, 787 00:34:15,120 --> 00:34:17,455 so the other cultural competency. 788 00:34:17,455 --> 00:34:20,692 So, integrating cultural and traditional knowledge, 789 00:34:20,992 --> 00:34:22,729 taking the views and perspectives 790 00:34:22,729 --> 00:34:24,729 of tribal members into consideration, 791 00:34:25,263 --> 00:34:27,713 and then also having reviewed by the IRB 792 00:34:27,713 --> 00:34:29,367 and community researchers. 793 00:34:29,801 --> 00:34:34,250 So, was one of the projects, I was lucky enough to be a part 794 00:34:34,250 --> 00:34:34,472 of 795 00:34:34,472 --> 00:34:37,770 was with the South Central Foundation 796 00:34:37,770 --> 00:34:40,712 before we this, we moved forward 797 00:34:40,712 --> 00:34:45,717 with doing a in-depth analysis of the CIP 2016. 798 00:34:46,518 --> 00:34:49,788 One of the things we did first was exploring stakeholder 799 00:34:49,788 --> 00:34:52,243 perceptions before embarking on this 800 00:34:52,243 --> 00:34:52,857 project. 801 00:34:52,857 --> 00:34:55,318 So we did a qualitative study of patients, 802 00:34:55,318 --> 00:34:57,662 providers and healthcare system leaders 803 00:34:58,163 --> 00:35:01,417 regarding pharmacogenetics use in tobacco decision 804 00:35:01,417 --> 00:35:02,133 treatment. 805 00:35:02,400 --> 00:35:04,816 So in the end, a lot of the folks 806 00:35:04,816 --> 00:35:07,305 we who were interviewed supported 807 00:35:07,305 --> 00:35:09,692 tobacco research, wanted collaboration 808 00:35:09,692 --> 00:35:11,576 with existing tribal programs 809 00:35:11,576 --> 00:35:13,378 and then wanted their results back. 810 00:35:13,378 --> 00:35:16,281 So so this is one way you can do this. 811 00:35:16,281 --> 00:35:18,216 Before embarking on a project 812 00:35:19,551 --> 00:35:21,419 transparency. 813 00:35:21,419 --> 00:35:23,264 Just making sure that the consent 814 00:35:23,264 --> 00:35:25,557 and the process are shared and detailed, 815 00:35:26,591 --> 00:35:29,094 making sure that storage of data 816 00:35:29,094 --> 00:35:33,698 and samples is addressed and, the informed consent 817 00:35:33,698 --> 00:35:36,001 and also made very clear to the community 818 00:35:36,001 --> 00:35:38,303 and also future use of data and samples. 819 00:35:39,004 --> 00:35:43,174 So this was an example of some of the language used 820 00:35:43,174 --> 00:35:46,745 and then informed consent that was actually used. 821 00:35:47,112 --> 00:35:49,848 It's anonymized here, but very clearly 822 00:35:49,848 --> 00:35:52,302 it says your DNA and blood samples 823 00:35:52,302 --> 00:35:53,385 belong to you. 824 00:35:53,718 --> 00:35:56,906 Samples will be stored for the duration of study at this 825 00:35:56,906 --> 00:35:57,589 university. 826 00:35:57,889 --> 00:36:01,459 Samples will be sent to this place 827 00:36:01,459 --> 00:36:03,813 for analysis without any identifying 828 00:36:03,813 --> 00:36:04,663 information. 829 00:36:05,397 --> 00:36:09,300 So it's very clear what happens to the sample, and it tells them 830 00:36:09,300 --> 00:36:11,344 how long they will keep the samples 831 00:36:11,344 --> 00:36:13,271 and what will happen afterwards. 832 00:36:13,271 --> 00:36:15,907 So just being very clear in that process 833 00:36:17,342 --> 00:36:19,577 and then capacity building, 834 00:36:19,577 --> 00:36:21,813 making sure that you're trying 835 00:36:21,813 --> 00:36:24,883 to include others and diversifying the workforce 836 00:36:24,883 --> 00:36:26,939 and doing a collaborative analysis, 837 00:36:26,939 --> 00:36:29,054 and then also sharing co-authorship 838 00:36:29,054 --> 00:36:32,490 with community members as well as researchers. 839 00:36:32,490 --> 00:36:35,493 So one way that I like to do this is, 840 00:36:35,960 --> 00:36:39,798 I'm, a long time faculty member with the summer internship 841 00:36:39,798 --> 00:36:43,134 for indigenous peoples in Genomics or housing. 842 00:36:43,134 --> 00:36:45,872 And at this workshop, we're able to do 843 00:36:45,872 --> 00:36:48,106 hands on training in genomics. 844 00:36:48,106 --> 00:36:50,442 We talk about different Elsi issues. 845 00:36:50,442 --> 00:36:52,408 We talk about indigenous knowledge 846 00:36:52,408 --> 00:36:53,912 and decolonizing science. 847 00:36:53,912 --> 00:36:57,044 And, this workshop has been around 848 00:36:57,044 --> 00:36:58,149 since 2011, 849 00:36:58,149 --> 00:37:02,795 and many of my tribal research partners have attended 850 00:37:02,795 --> 00:37:03,321 same, 851 00:37:03,555 --> 00:37:07,539 just because it was a great way to have them learn more about 852 00:37:07,539 --> 00:37:08,193 genomics, 853 00:37:08,193 --> 00:37:11,881 but also engage in discussion with other tribal community 854 00:37:11,881 --> 00:37:12,464 members. 855 00:37:12,464 --> 00:37:14,532 And so often we have 856 00:37:15,800 --> 00:37:19,137 about 20 people who attend every year. 857 00:37:19,137 --> 00:37:21,964 And these individuals are all from different tribal 858 00:37:21,964 --> 00:37:22,574 indigenous 859 00:37:22,574 --> 00:37:25,257 communities around around the US and around 860 00:37:25,257 --> 00:37:25,944 the world. 861 00:37:26,311 --> 00:37:30,248 So it's a really great way to, support capacity building. 862 00:37:30,248 --> 00:37:33,451 And then, also inform people of what you're doing 863 00:37:34,486 --> 00:37:38,523 and think has actually crossed international waters now. 864 00:37:38,523 --> 00:37:41,493 So there's a saying Australia and New Zealand, 865 00:37:41,759 --> 00:37:44,929 there's a shame Australia, there's a saying, 866 00:37:47,132 --> 00:37:48,867 Canada. 867 00:37:48,867 --> 00:37:51,503 So I think it goes under a different name now. 868 00:37:51,503 --> 00:37:53,524 But all of from the original thing 869 00:37:53,524 --> 00:37:54,772 that was in the USA, 870 00:37:55,039 --> 00:37:59,611 all of these other groups have used sing in their own way 871 00:37:59,611 --> 00:38:02,237 and created that we have for capacity, 872 00:38:02,237 --> 00:38:03,481 capacity building 873 00:38:05,016 --> 00:38:07,092 and then thinking about knowledge 874 00:38:07,092 --> 00:38:08,853 and distributing knowledge. 875 00:38:08,853 --> 00:38:11,801 Only very few people I found from the 876 00:38:11,801 --> 00:38:14,192 community actually read your, 877 00:38:15,960 --> 00:38:17,462 the academic publications. 878 00:38:17,462 --> 00:38:20,039 So it's important to make the information 879 00:38:20,039 --> 00:38:21,799 available through different 880 00:38:22,100 --> 00:38:23,535 than for different areas. 881 00:38:23,535 --> 00:38:26,159 So as a part of some of my research, 882 00:38:26,159 --> 00:38:27,472 our research team 883 00:38:27,472 --> 00:38:30,340 has presented at tribal community 884 00:38:30,340 --> 00:38:31,209 meetings. 885 00:38:32,143 --> 00:38:35,728 We've done forums on the local Navajo 886 00:38:35,728 --> 00:38:37,182 radio station. 887 00:38:37,982 --> 00:38:40,696 And also, I know other colleagues have created 888 00:38:40,696 --> 00:38:41,286 pamphlets 889 00:38:41,286 --> 00:38:44,904 and put things on social media to make it more easily 890 00:38:44,904 --> 00:38:45,723 digestible. 891 00:38:46,925 --> 00:38:49,567 So I think these are just some ideas 892 00:38:49,567 --> 00:38:50,962 on how people can, 893 00:38:51,963 --> 00:38:54,232 work with communities. 894 00:38:54,232 --> 00:38:58,737 So that the knowledge is shared and people are excited about the 895 00:38:58,737 --> 00:38:59,370 research 896 00:38:59,370 --> 00:39:01,549 and don't feel like they're just being 897 00:39:01,549 --> 00:39:03,841 used as a part of the research process. 898 00:39:04,776 --> 00:39:07,227 So in pharmacogenomics specifically, 899 00:39:07,227 --> 00:39:08,112 I think that 900 00:39:08,112 --> 00:39:11,115 the future of pharmacogenomics is right. 901 00:39:11,549 --> 00:39:13,480 I think that we have a lot of different 902 00:39:13,480 --> 00:39:14,619 initiatives happening. 903 00:39:15,553 --> 00:39:18,453 One of which I'm super proud of these folks 904 00:39:18,453 --> 00:39:18,790 here 905 00:39:18,790 --> 00:39:21,826 who have started for the Native Bio Data Consortium. 906 00:39:22,093 --> 00:39:24,877 So this is the first nonprofit research 907 00:39:24,877 --> 00:39:27,732 institute led by indigenous scientists. 908 00:39:27,732 --> 00:39:30,034 And they are able to store, 909 00:39:31,069 --> 00:39:31,603 data. 910 00:39:31,603 --> 00:39:35,008 They're able to store bio specimens on tribal 911 00:39:35,008 --> 00:39:35,840 lands. So, 912 00:39:37,542 --> 00:39:39,944 if you're interested, Joe, your chat, here 913 00:39:39,944 --> 00:39:42,947 and Marianne is the director, 914 00:39:43,681 --> 00:39:46,351 the other initiative that I have been working with 915 00:39:46,351 --> 00:39:49,354 is Doctor Erica Woodall at the University of Montana. 916 00:39:49,921 --> 00:39:52,089 She has the Precision Medicine Project 917 00:39:52,089 --> 00:39:53,858 where they are targeting rural 918 00:39:53,858 --> 00:39:56,416 and indigenous communities and trying to implement 919 00:39:56,416 --> 00:39:56,928 precision 920 00:39:56,928 --> 00:40:00,031 medicine in those communities. 921 00:40:00,031 --> 00:40:02,380 And also, I, I also work with many tribal 922 00:40:02,380 --> 00:40:03,067 communities 923 00:40:03,067 --> 00:40:06,237 trying to do precision, pharmacogenomics. 924 00:40:06,237 --> 00:40:10,275 So, I work with, communities in British 925 00:40:10,275 --> 00:40:13,362 Columbia and Arizona across the United 926 00:40:13,362 --> 00:40:14,012 States. 927 00:40:14,012 --> 00:40:18,316 So, I'm really excited to continue this work. 928 00:40:19,684 --> 00:40:22,687 So I wanted to end with, 929 00:40:22,920 --> 00:40:25,657 the next steps in precision pharmacogenetics. 930 00:40:25,657 --> 00:40:27,845 So my colleagues and I and leading doctor 931 00:40:27,845 --> 00:40:28,593 Erica Woodall 932 00:40:28,593 --> 00:40:31,562 from University of Montana, 933 00:40:31,562 --> 00:40:34,165 wrote this article earlier this year 934 00:40:34,165 --> 00:40:37,268 about how to implement community engagement antigen. 935 00:40:37,268 --> 00:40:41,472 And it's in indigenous research, and indigenous communities. 936 00:40:41,973 --> 00:40:44,409 So, this is one of our figures. 937 00:40:44,409 --> 00:40:46,794 We thought that this was a good way 938 00:40:46,794 --> 00:40:47,612 of thinking 939 00:40:47,612 --> 00:40:50,715 about all of the different components to, 940 00:40:50,715 --> 00:40:53,651 taking a holistic healing approach. 941 00:40:53,651 --> 00:40:57,689 So in the middle of these, share all of the key 942 00:40:57,689 --> 00:41:01,089 people and stakeholders who are involved, 943 00:41:01,089 --> 00:41:03,328 not only communities, but, 944 00:41:05,296 --> 00:41:07,131 researchers, funders, 945 00:41:07,131 --> 00:41:09,066 tribal health, traditional healers 946 00:41:09,066 --> 00:41:10,601 and research participants. 947 00:41:11,169 --> 00:41:14,005 And then we thought that increasing 948 00:41:14,005 --> 00:41:17,008 knowledge and 949 00:41:17,208 --> 00:41:19,577 pharmacokinetic knowledge, 950 00:41:19,577 --> 00:41:23,163 using American Indian Alaska Native variation was super 951 00:41:23,163 --> 00:41:23,815 important 952 00:41:23,815 --> 00:41:27,085 because until we know this variation, 953 00:41:27,085 --> 00:41:30,188 we're not able to implement it clinically. 954 00:41:30,188 --> 00:41:32,256 And that was the other, 955 00:41:32,256 --> 00:41:34,344 area that we thought was really important 956 00:41:34,344 --> 00:41:36,227 in thinking about 24 implementation, 957 00:41:36,227 --> 00:41:38,878 which is related to technical decision 958 00:41:38,878 --> 00:41:40,064 support systems, 959 00:41:40,264 --> 00:41:43,193 pharmacogenetics testing, and then also education and 960 00:41:43,193 --> 00:41:43,801 resources, 961 00:41:44,335 --> 00:41:47,572 for physicians who are working with native 962 00:41:47,572 --> 00:41:50,575 participants or native, 963 00:41:51,275 --> 00:41:52,276 patients. 964 00:41:52,276 --> 00:41:54,762 And then lastly, traditional knowledge and 965 00:41:54,762 --> 00:41:55,413 practices. 966 00:41:55,413 --> 00:41:58,028 So this was and back a couple of years 967 00:41:58,028 --> 00:41:58,716 ago, the, 968 00:42:00,451 --> 00:42:02,020 Tribal Health Research Office 969 00:42:02,020 --> 00:42:06,650 put together a summit, and it was held at University of 970 00:42:06,650 --> 00:42:07,492 Colorado. 971 00:42:07,492 --> 00:42:11,396 But this, report is available online. 972 00:42:11,396 --> 00:42:13,312 But one of the quotes that I liked 973 00:42:13,312 --> 00:42:15,566 is that it is important for researchers 974 00:42:15,566 --> 00:42:18,530 to understand that there is an intersection between 975 00:42:18,530 --> 00:42:18,936 health 976 00:42:19,303 --> 00:42:22,822 research and spirituality in American Indian Alaska Native 977 00:42:22,822 --> 00:42:23,307 health. 978 00:42:23,307 --> 00:42:24,776 And so, 979 00:42:24,776 --> 00:42:27,322 this goes back to what I said initially, 980 00:42:27,322 --> 00:42:29,614 that a lot of our community members 981 00:42:29,881 --> 00:42:31,918 are still using traditional herbs 982 00:42:31,918 --> 00:42:33,584 and traditional ceremonies 983 00:42:33,584 --> 00:42:36,187 when whenever something bad happens. 984 00:42:36,187 --> 00:42:39,432 So if there's a diagnosis for a disease, 985 00:42:39,432 --> 00:42:40,324 they often 986 00:42:40,324 --> 00:42:42,712 go to the traditional people first 987 00:42:42,712 --> 00:42:45,029 and then they go to the western, 988 00:42:45,963 --> 00:42:47,632 western treatment option. 989 00:42:47,632 --> 00:42:50,432 So, and it's there's a separation 990 00:42:50,432 --> 00:42:51,536 that doesn't 991 00:42:51,536 --> 00:42:54,639 need to be a separation, but we can, 992 00:42:54,639 --> 00:42:55,606 do it together. 993 00:42:55,606 --> 00:42:58,269 And one of the things in pharmacogenetics, 994 00:42:58,269 --> 00:43:00,678 we have all of these guidelines that, 995 00:43:01,712 --> 00:43:04,082 where we can establish a person's 996 00:43:04,082 --> 00:43:07,084 dose and the medication to treat, 997 00:43:07,351 --> 00:43:09,720 let's say depression, but then that's 998 00:43:09,720 --> 00:43:12,723 just treating one aspect, one symptom. 999 00:43:12,990 --> 00:43:15,666 Whereas, in order to treat the whole 1000 00:43:15,666 --> 00:43:16,260 person, 1001 00:43:16,260 --> 00:43:17,662 we need to take into account 1002 00:43:17,662 --> 00:43:19,726 the whole community, that environment 1003 00:43:19,726 --> 00:43:21,232 that the person mentioned. 1004 00:43:22,166 --> 00:43:26,070 So, with that, I will, 1005 00:43:27,605 --> 00:43:29,474 leave you with a couple points. 1006 00:43:29,474 --> 00:43:32,730 I think that knowledge, different knowledge processes 1007 00:43:32,730 --> 00:43:33,344 and some, 1008 00:43:33,344 --> 00:43:36,647 some systems can come in many different forms. 1009 00:43:37,081 --> 00:43:39,401 I think inclusion of the indigenous 1010 00:43:39,401 --> 00:43:41,919 perspective is important in research. 1011 00:43:43,020 --> 00:43:45,066 And we need to shift towards community 1012 00:43:45,066 --> 00:43:45,389 based 1013 00:43:45,389 --> 00:43:48,426 genomic research and holistic healing to, 1014 00:43:49,560 --> 00:43:51,229 ensure that people 1015 00:43:51,229 --> 00:43:54,332 are healthy, to the best that they can be. 1016 00:43:54,832 --> 00:43:57,935 And then we have to ensure that indigenous communities 1017 00:43:57,935 --> 00:44:00,938 govern and benefit from research. 1018 00:44:00,938 --> 00:44:04,008 And so that I will thank you. 1019 00:44:04,008 --> 00:44:08,446 I want to thank my lab members, current and past. 1020 00:44:08,846 --> 00:44:10,996 And also, I want to thank my tribal 1021 00:44:10,996 --> 00:44:11,549 partners 1022 00:44:11,549 --> 00:44:14,585 who have been amazing and supportive. 1023 00:44:14,585 --> 00:44:17,588 All of this would not be done without, 1024 00:44:18,356 --> 00:44:19,257 their input. 1025 00:44:19,257 --> 00:44:21,972 And then also my many collaborators 1026 00:44:21,972 --> 00:44:22,593 across, 1027 00:44:24,295 --> 00:44:26,430 across the world in the US. 1028 00:44:26,430 --> 00:44:27,698 But thank you everyone.