1 00:00:03,971 --> 00:00:05,672 So here is my question. 2 00:00:05,672 --> 00:00:08,141 So we've been talking, certainly from 3 00:00:08,141 --> 00:00:10,711 your perspective from pharmacogenomics 4 00:00:10,711 --> 00:00:13,814 and genomics, more generally, and we've been talking about 5 00:00:13,814 --> 00:00:14,581 that all day. 6 00:00:14,882 --> 00:00:18,685 But I'm wondering if you mean, it seems to me that all of the 7 00:00:18,685 --> 00:00:19,353 principles 8 00:00:19,353 --> 00:00:22,522 and approaches and, 9 00:00:22,522 --> 00:00:25,525 that would apply to any researcher 10 00:00:25,525 --> 00:00:30,097 who is planning to engage an indigenous community 11 00:00:30,097 --> 00:00:33,100 in a research effort. 12 00:00:34,501 --> 00:00:35,802 Yes, that's right. 13 00:00:35,802 --> 00:00:38,038 And I think it's not only just indigenous 14 00:00:38,038 --> 00:00:38,739 communities. 15 00:00:38,739 --> 00:00:41,808 I think other other communities. 16 00:00:42,843 --> 00:00:45,846 And we can use these same principles. 17 00:00:46,413 --> 00:00:50,250 So other communities that might be underserved or I 18 00:00:50,250 --> 00:00:50,684 mean, 19 00:00:50,684 --> 00:00:54,054 I think I, I really like the way 20 00:00:54,054 --> 00:00:57,057 you talked about the importance of 21 00:00:57,357 --> 00:01:00,360 not thinking about these as separate realms. 22 00:01:00,360 --> 00:01:02,262 And you know that there's science 23 00:01:02,262 --> 00:01:03,230 on the one hand. 24 00:01:03,230 --> 00:01:06,566 And then there are cultural, cultural traditions on the 25 00:01:06,566 --> 00:01:07,000 other. 26 00:01:07,234 --> 00:01:10,203 And that seems like a universal lesson 27 00:01:10,203 --> 00:01:13,307 that there are, all sorts of ways 28 00:01:13,307 --> 00:01:14,975 that if you go in 29 00:01:14,975 --> 00:01:20,080 with one perspective and sort of dismiss the other, 30 00:01:21,148 --> 00:01:22,449 it wouldn't be surprising if 31 00:01:22,449 --> 00:01:25,452 you wouldn't be welcome into that community. 32 00:01:30,457 --> 00:01:33,393 So in thinking more about the 33 00:01:33,393 --> 00:01:37,965 the work that you're doing, are there particular 34 00:01:39,032 --> 00:01:42,035 topics that you find are, 35 00:01:43,070 --> 00:01:45,205 you know, more controversial 36 00:01:45,205 --> 00:01:48,241 than others when engaging indigenous 37 00:01:48,241 --> 00:01:51,745 communities, or is it a matter of sort of 38 00:01:51,745 --> 00:01:52,846 meeting them 39 00:01:52,846 --> 00:01:56,016 where they are and, you know, engaging them 40 00:01:56,016 --> 00:01:59,019 from that point? 41 00:02:01,021 --> 00:02:01,688 Yeah. 42 00:02:01,688 --> 00:02:05,225 I think that's initially one of the questions 43 00:02:05,225 --> 00:02:08,228 that I always get. And, 44 00:02:08,628 --> 00:02:11,298 from folks is about, 45 00:02:11,298 --> 00:02:16,169 tribal membership and tribal enrollment 46 00:02:16,169 --> 00:02:20,040 and how genetics could play a role. 47 00:02:20,807 --> 00:02:23,810 But I think it's, 48 00:02:24,211 --> 00:02:27,781 I don't think that genetics can help with that 49 00:02:27,781 --> 00:02:30,784 because a lot of tribal enrollment, 50 00:02:32,619 --> 00:02:35,656 rules are tribes specific, too. 51 00:02:35,656 --> 00:02:37,457 So it it always involves a 52 00:02:37,457 --> 00:02:38,658 conversation of, 53 00:02:39,393 --> 00:02:42,262 what can genetics actually do? 54 00:02:42,262 --> 00:02:45,032 We can't distinguish we can't distinguish 55 00:02:45,032 --> 00:02:47,300 between people at a tribal level. 56 00:02:48,568 --> 00:02:51,571 And would we even want to. So, 57 00:02:52,672 --> 00:02:55,675 I think the other one of the ways is, 58 00:02:56,043 --> 00:02:58,712 genetics can be used in tribal enrollment 59 00:02:58,712 --> 00:03:00,480 as, like a paternity test. 60 00:03:01,014 --> 00:03:02,816 That's the only 61 00:03:02,816 --> 00:03:03,283 test. 62 00:03:03,283 --> 00:03:05,485 Genetic test I've seen is enrollment. 63 00:03:05,485 --> 00:03:08,822 But usually that's a, sort of a controversial or, 64 00:03:10,590 --> 00:03:13,593 could be a contentious topic that, 65 00:03:13,860 --> 00:03:17,464 I don't do any research in that area, so, 66 00:03:17,464 --> 00:03:19,299 I try to avoid that. 67 00:03:19,299 --> 00:03:22,302 Yeah. If possible. 68 00:03:22,803 --> 00:03:25,105 The other thing, 69 00:03:25,105 --> 00:03:27,941 and I think the other topics are really driven 70 00:03:27,941 --> 00:03:30,544 by the tribal communities themselves, 71 00:03:30,544 --> 00:03:31,878 and sometimes it's 72 00:03:31,878 --> 00:03:34,881 also that I have to take a step back and, 73 00:03:36,216 --> 00:03:37,884 say that, well, 74 00:03:37,884 --> 00:03:41,421 this technically isn't a genetics. 75 00:03:41,421 --> 00:03:44,458 Genetics research probably won't help 76 00:03:44,458 --> 00:03:47,461 this as much as, 77 00:03:47,794 --> 00:03:51,865 prevention research or having adequate health care. 78 00:03:51,865 --> 00:03:55,902 So, that's one of the things I think of when, like a lot of 79 00:03:55,902 --> 00:03:56,436 people, 80 00:03:57,270 --> 00:04:00,373 like, are interested in type two diabetes 81 00:04:00,373 --> 00:04:02,576 because it affects so many of their community 82 00:04:02,576 --> 00:04:03,009 members. 83 00:04:03,009 --> 00:04:05,278 But I don't know if a genetic approach 84 00:04:05,278 --> 00:04:06,613 would be appropriate. 85 00:04:06,613 --> 00:04:09,282 Like using a lot of funds to study type 86 00:04:09,282 --> 00:04:11,051 two diabetes and genetics 87 00:04:11,051 --> 00:04:15,755 and the genetics aspect, when I can see that there are 88 00:04:16,223 --> 00:04:20,393 people are living in health or food deserts, they don't have 89 00:04:20,393 --> 00:04:21,094 adequate, 90 00:04:22,462 --> 00:04:24,030 access to healthy foods. 91 00:04:24,030 --> 00:04:28,568 They don't have, a lot of these other resources that are not 92 00:04:28,568 --> 00:04:29,336 genetics, 93 00:04:29,336 --> 00:04:33,140 but other prevention mechanisms that are more appropriate for. 94 00:04:33,607 --> 00:04:35,342 And when you're thinking about this topic. 95 00:04:35,342 --> 00:04:38,145 So I think I'm, I'm always trying 96 00:04:38,145 --> 00:04:40,547 to see how genetics really, 97 00:04:41,581 --> 00:04:43,416 play a role. 98 00:04:43,416 --> 00:04:47,320 And just thinking about what would be best from my 99 00:04:47,320 --> 00:04:48,321 perspective. 100 00:04:48,321 --> 00:04:49,956 And so that's also why. 101 00:04:49,956 --> 00:04:52,692 And when I do these studies, I try to at 102 00:04:52,692 --> 00:04:55,428 least have other types of measurements, 103 00:04:55,896 --> 00:04:58,131 that can be useful in the future too, 104 00:04:58,131 --> 00:05:00,534 if we do do some type of genetic study. 105 00:05:01,067 --> 00:05:01,868 Great. Yeah. 106 00:05:01,868 --> 00:05:05,405 Just another reminder about context, right. 107 00:05:05,405 --> 00:05:06,740 In terms of. 108 00:05:06,740 --> 00:05:09,109 You know, the like the limitations 109 00:05:09,109 --> 00:05:11,044 of the genetic information. 110 00:05:11,778 --> 00:05:13,113 We have a question here. 111 00:05:13,113 --> 00:05:14,581 Brittany Scott one. Hi. 112 00:05:14,581 --> 00:05:17,350 I was wondering if you can say more about, 113 00:05:17,350 --> 00:05:19,386 the discussions within the Navajo Nation 114 00:05:19,386 --> 00:05:21,188 about the ban on genetics research 115 00:05:21,188 --> 00:05:23,290 and if it's just kind of the risks 116 00:05:23,290 --> 00:05:24,291 seem to be more 117 00:05:24,291 --> 00:05:27,427 than the benefits for people within the nation. 118 00:05:27,427 --> 00:05:29,462 And also that extends to clinical 119 00:05:29,462 --> 00:05:31,097 genetics or just research. 120 00:05:32,432 --> 00:05:34,801 Yeah, that's a great question. 121 00:05:34,801 --> 00:05:37,671 So the moratorium 122 00:05:37,671 --> 00:05:40,874 only extends to individuals. 123 00:05:41,274 --> 00:05:43,343 The jurisdiction of the Navajo Nation. 124 00:05:43,343 --> 00:05:45,912 So technically, if we were off the Navajo 125 00:05:45,912 --> 00:05:46,413 Nation, 126 00:05:46,413 --> 00:05:49,182 we could participate in a study. 127 00:05:49,182 --> 00:05:53,086 And it's only, on research, clinical, 128 00:05:54,120 --> 00:05:56,790 use of genetics for clinical testing, 129 00:05:56,790 --> 00:05:57,724 can be done. 130 00:05:57,724 --> 00:06:00,327 It's often not done on the Navajo Nation. 131 00:06:00,327 --> 00:06:02,963 Anyways, but they usually have to refer 132 00:06:02,963 --> 00:06:03,430 people 133 00:06:03,430 --> 00:06:07,400 outside of the reservation for, clinical genetic testing. 134 00:06:07,400 --> 00:06:09,803 So if it's being used for clinical care, 135 00:06:09,803 --> 00:06:12,038 I think that's completely allowable. 136 00:06:13,139 --> 00:06:15,675 So back when the moratorium was put in 137 00:06:15,675 --> 00:06:16,142 place, 138 00:06:16,409 --> 00:06:17,877 there's a really great video 139 00:06:17,877 --> 00:06:20,547 that came out around the time, called The Gift of 140 00:06:20,547 --> 00:06:20,880 Life. 141 00:06:21,648 --> 00:06:24,084 It's I don't know if it's available online, but 142 00:06:24,084 --> 00:06:24,651 it's there 143 00:06:24,651 --> 00:06:29,356 for video that contextualizes all of the concerns at the time. 144 00:06:31,524 --> 00:06:34,194 I think also those perceptions have 145 00:06:34,194 --> 00:06:34,894 changed. 146 00:06:34,894 --> 00:06:40,567 So we published a paper in 2019 where we did a survey 147 00:06:40,567 --> 00:06:44,771 in the Navajo community we surveyed over 700 Navajo 148 00:06:44,771 --> 00:06:45,438 people, 149 00:06:45,438 --> 00:06:48,074 and we asked them questions like, 150 00:06:48,074 --> 00:06:49,609 what did you know? 151 00:06:49,609 --> 00:06:53,280 The moratorium was, existed. 152 00:06:53,280 --> 00:06:55,882 And and then one of the last questions 153 00:06:55,882 --> 00:06:57,450 was, do you think that 154 00:06:57,450 --> 00:07:00,587 we should lift or remove the moratorium? 155 00:07:00,587 --> 00:07:02,656 And also we asked them about different 156 00:07:02,656 --> 00:07:04,858 concerns that they had in the community. 157 00:07:05,725 --> 00:07:08,862 So, one of the most resounding results 158 00:07:08,862 --> 00:07:12,632 was that over about 75% of people 159 00:07:12,866 --> 00:07:16,903 did not know that the moratorium was in place 160 00:07:17,437 --> 00:07:20,340 back in 20 2018, 2019, 161 00:07:20,340 --> 00:07:23,543 when we conducted the survey, but about, 162 00:07:24,344 --> 00:07:28,315 and about 50 to 60%, we're not sure what to do. 163 00:07:28,315 --> 00:07:30,517 They weren't they felt like they weren't 164 00:07:30,517 --> 00:07:32,252 informed enough to know whether 165 00:07:32,485 --> 00:07:35,755 they should support lifting the moratorium or or 166 00:07:35,755 --> 00:07:36,089 not. 167 00:07:37,457 --> 00:07:39,292 And one of the big things that came out of 168 00:07:39,292 --> 00:07:39,893 that was that 169 00:07:39,893 --> 00:07:42,629 people said, we want more information on 170 00:07:42,629 --> 00:07:43,263 genetics 171 00:07:43,263 --> 00:07:46,266 and how it could affect the Navajo community. 172 00:07:46,833 --> 00:07:51,571 We want if this was to genetic research was to go forward, 173 00:07:51,571 --> 00:07:53,907 we want it to prioritize some of the 174 00:07:53,907 --> 00:07:56,009 health issues in our community. 175 00:07:56,376 --> 00:07:59,646 And then, we want to be involved. 176 00:07:59,646 --> 00:08:03,316 And so that that survey led to my colleagues 177 00:08:03,316 --> 00:08:05,518 and I creating another or submitting 178 00:08:05,518 --> 00:08:06,453 another grant. 179 00:08:06,453 --> 00:08:08,254 It's a large pilot grants. 180 00:08:08,254 --> 00:08:11,624 And as a part of that grant, we proposed to develop 181 00:08:11,624 --> 00:08:14,260 all of these genetic literacy projects 182 00:08:14,260 --> 00:08:15,862 for the Navajo Nation. 183 00:08:15,862 --> 00:08:18,098 So, we're excited that next year, 184 00:08:18,098 --> 00:08:19,566 we as a part of that, 185 00:08:19,566 --> 00:08:23,503 we're also we, proposed to, to host a big conference. 186 00:08:23,770 --> 00:08:26,806 So next year we will be hosting the Navajo 187 00:08:26,806 --> 00:08:27,440 Genetics 188 00:08:27,440 --> 00:08:31,811 Conference in May of 2025, where we will, 189 00:08:32,979 --> 00:08:33,513 share 190 00:08:33,513 --> 00:08:36,549 all of the educational products that we've created. 191 00:08:36,549 --> 00:08:40,987 One is a Navajo genetics glossary of over 250 192 00:08:41,221 --> 00:08:43,890 genetics terms translated into the Navajo 193 00:08:43,890 --> 00:08:44,557 language. 194 00:08:44,557 --> 00:08:47,360 And that'll be a booklet we publish. 195 00:08:47,360 --> 00:08:50,697 Another is five, digital stories 196 00:08:50,697 --> 00:08:54,167 that we will share, hopefully before then. 197 00:08:54,601 --> 00:08:57,237 And then we're also creating, cultural framework 198 00:08:57,237 --> 00:08:59,239 for thinking about genetic research 199 00:08:59,239 --> 00:09:00,840 with, the Navajo community. 200 00:09:01,141 --> 00:09:03,710 So we're really excited about this conference next year. 201 00:09:03,710 --> 00:09:05,311 If you're if anyone's interested, 202 00:09:05,311 --> 00:09:06,279 please let me know. 203 00:09:06,279 --> 00:09:08,047 We should have, 204 00:09:08,047 --> 00:09:10,617 website up, in a couple of months 205 00:09:10,617 --> 00:09:11,718 or this year. 206 00:09:12,051 --> 00:09:13,486 Great. 207 00:09:13,486 --> 00:09:14,788 Well, thank you for that question. 208 00:09:14,788 --> 00:09:16,189 Yeah. Thank you again.