WEBVTT - When The Data Is Us (with Krystal Tsosie) 0:00:00.080 --> 0:00:04.520 Yeah. Welcome to How to Citizen with Baritune Day, a 0:00:04.600 --> 0:00:08.400 podcast that reimagine citizen as a verb, not a legal status. 0:00:09.240 --> 0:00:11.639 This season is all about tech and how it can 0:00:11.680 --> 0:00:15.960 bring us together instead of tearing us apart. We're bringing 0:00:16.000 --> 0:00:18.720 you the people using technology for so much more than 0:00:18.800 --> 0:00:29.760 revenue and user growth. They're using it to help us citizen. Today, 0:00:29.920 --> 0:00:34.440 we're continuing our conversation about data. Last time with Kasha, 0:00:34.760 --> 0:00:37.680 we looked at the way data scientists categorize and use 0:00:37.800 --> 0:00:41.440 data to make algorithms and other technologies. The hope is 0:00:42.040 --> 0:00:45.199 if the data set used is properly labeled and vetted, 0:00:45.560 --> 0:00:48.440 the better the tech eventually becomes, and we can make 0:00:48.440 --> 0:00:51.640 tools that are smarter and more importantly, more equitable. And 0:00:51.720 --> 0:00:54.240 the algorithm comes out the end, and there's a decision 0:00:54.240 --> 0:00:56.120 that's made you get the loan. You didn't get the loan. 0:00:56.560 --> 0:01:00.760 The algorithm recognizes your speech, doesn't recognize your speech, sees you, 0:01:00.880 --> 0:01:04.520 doesn't see you. People think, oh, just change the algorithm. 0:01:04.240 --> 0:01:06.360 Oh no, you have to go all the way back 0:01:06.400 --> 0:01:10.280 to the beginning. Cash is right. We can't just change 0:01:10.280 --> 0:01:13.560 the algorithm. We have to go further back and examine 0:01:13.600 --> 0:01:17.120 how data is collected in the first place. So consider 0:01:17.200 --> 0:01:25.440 this episode Data Justice Part two. Right now, it's possible 0:01:25.520 --> 0:01:28.920 that data is the most valuable resource on the planet. 0:01:29.840 --> 0:01:33.520 We use it to drive advertising, medical research, product development. 0:01:33.800 --> 0:01:37.920 Its applications are endless, and I'm not being hyperbolic. In 0:01:38.040 --> 0:01:42.440 terms of financial value, data currently beats out coal oil. 0:01:43.120 --> 0:01:47.200 It's a commodity. That race to collect and monetize data 0:01:47.400 --> 0:01:51.800 has transformed into a veritable gold rush, or I guess 0:01:51.800 --> 0:01:56.600 I should say data rush. Now. In its most basic form, 0:01:56.800 --> 0:02:01.480 data is information, but beyond that, it also helps define 0:02:01.680 --> 0:02:05.360 parts of who we are and the smallest part of us. 0:02:06.200 --> 0:02:09.600 There's a market for that too. Those tiny nuggets of 0:02:09.720 --> 0:02:14.600 data are precious and extremely personal. They live inside of us. 0:02:15.240 --> 0:02:20.080 I'm talking about genetic data. Are geno that O G code. 0:02:21.520 --> 0:02:25.520 The business around genetic data is huge, and I don't 0:02:25.639 --> 0:02:27.919 mean just the twenty three and me tests you gave 0:02:27.960 --> 0:02:31.200 your family member last holiday season. I'm talking about a 0:02:31.240 --> 0:02:37.200 global industry worth billions of dollars. Bio data companies initially 0:02:37.240 --> 0:02:40.160 set out to make genetic testing approachable and affordable for 0:02:40.200 --> 0:02:43.760 the general public, and at first, these little tubes they 0:02:43.760 --> 0:02:47.560 were intended to assess our risk for genetic diseases. But 0:02:47.720 --> 0:02:51.640 since then they've really grown in popularity by offering us 0:02:51.720 --> 0:02:57.119 a window into our past, our geographical ancestry. And when 0:02:57.160 --> 0:03:00.720 we spit in the tube and contribute to these data sets, Yo, 0:03:00.800 --> 0:03:05.560 it feels revelatory and super scientific. Like I found out 0:03:05.600 --> 0:03:09.760 I was exactly twenty five point three percent Nigerian WHOA. 0:03:11.240 --> 0:03:13.960 I even hosted a podcast partnered with twenty three in 0:03:14.040 --> 0:03:17.200 Me called spit you might have heard it, and I 0:03:17.240 --> 0:03:19.360 got to talk to all kinds of people about how 0:03:19.440 --> 0:03:22.600 DNA can give us a new perspective on our relationships 0:03:22.639 --> 0:03:25.639 with each other and with our health. At the time, 0:03:25.760 --> 0:03:28.360 I was thrilled to share these new ideas about an 0:03:28.400 --> 0:03:31.400 emerging science. It was a shiny and new way of 0:03:31.440 --> 0:03:34.960 looking at ourselves and our ancestors. But my guest today 0:03:35.200 --> 0:03:43.600 made me rethink everything. Who does data ultimately benefit? If 0:03:43.600 --> 0:03:47.360 the data is not benefiting the people, the individuals, the 0:03:47.400 --> 0:03:51.680 communities that provided that data, then who are we using 0:03:51.680 --> 0:03:54.520 it for? Who are we protecting and who are we 0:03:54.600 --> 0:03:59.120 uplifting at the cost of others? Justice. Crystal Socie is 0:03:59.160 --> 0:04:04.080 an Indigenous meticists and bioethicist at the Native Biodata Consortium. 0:04:04.120 --> 0:04:07.400 She used to work in precision medicine, developing targeted therapies 0:04:07.440 --> 0:04:10.560 and treatments focused on cancer. But that experience led her 0:04:10.600 --> 0:04:14.440 to co found the nonprofit Consortium with other Indigenous scientists, 0:04:14.680 --> 0:04:17.600 and they built a network for Native researchers to collaborate 0:04:17.960 --> 0:04:23.240 and protect their data heritage to already underserved and underrepresented 0:04:23.279 --> 0:04:26.560 people's data could be part of what gives these communities 0:04:26.600 --> 0:04:33.920 determination and agency over their own personhood and knowledge. Hello, Hello, 0:04:34.120 --> 0:04:36.240 welcome to how does Citizen. Thank you so much for 0:04:36.240 --> 0:04:39.200 the kind invite. You are so welcome. We're very excited 0:04:39.240 --> 0:04:41.640 to have you as a part of Crystal joined me 0:04:41.720 --> 0:04:44.919 from Phoenix, Arizona, which is the ancestral homeland of the 0:04:45.000 --> 0:04:49.400 authom Pepash and Hagm people's. I joined her from northeast 0:04:49.480 --> 0:04:52.200 Los Angeles, the homeland of the Tongua people's who are 0:04:52.240 --> 0:04:55.880 also known as the Keeach. I want to start with 0:04:55.920 --> 0:04:59.039 your ted talk called d n A is not our identity. 0:04:59.600 --> 0:05:03.440 I in here to Vanderbilt to pursue a PhD in genetics, 0:05:03.640 --> 0:05:06.000 and because of that, many people come up to me 0:05:06.200 --> 0:05:10.400 with this question in mind, who am I? Really? What 0:05:10.440 --> 0:05:13.920 they're asking is who am I? In context? It is 0:05:14.000 --> 0:05:17.040 direct to consumer genetic test kit. Now you probably have 0:05:17.080 --> 0:05:19.000 been made the concept. You spend a hundred to two 0:05:19.080 --> 0:05:23.080 hundred dollars, You spent a whole lot of saliva, more 0:05:23.080 --> 0:05:24.800 than you ever thought you can ever produce in your 0:05:24.920 --> 0:05:28.880 entire life, and you mail it out thirty days later 0:05:28.920 --> 0:05:31.919 you get a result, and that result is a percent 0:05:32.320 --> 0:05:36.760 estimation of ancestral background. First of all, nice work. And 0:05:37.160 --> 0:05:40.919 that question of who am I is actually mired in 0:05:41.080 --> 0:05:44.800 something else because according to ancestry d m A, the 0:05:44.920 --> 0:05:48.360 number one question is why isn't my Native American ancestry 0:05:48.360 --> 0:05:54.120 not showing up? Oh? Okay, I only have ten minutes, 0:05:54.120 --> 0:05:57.400 not ten years, to unpack the assertedness of that claim, 0:05:57.920 --> 0:06:01.480 or to tell you how dangerous it is to equate 0:06:01.520 --> 0:06:05.240 indigenousity in a false way. And I think a lot 0:06:05.279 --> 0:06:07.600 of us get the opposite message. You know, there's a 0:06:07.680 --> 0:06:11.120 lot of DNA testing. It's become like a party favor 0:06:11.240 --> 0:06:14.680 in some ways to define yourself by the data in 0:06:14.760 --> 0:06:19.159 your genetics and run these tests, so people think the opposite. Actually, 0:06:19.160 --> 0:06:22.520 my DNA is my identity. That's what all the messaging says. 0:06:22.880 --> 0:06:25.880 So tell me why you say our DNA is not 0:06:26.000 --> 0:06:30.200 that our genetics are only half of the story. And 0:06:30.240 --> 0:06:34.160 in fact, when we talk about health inequities and communities 0:06:34.240 --> 0:06:37.119 of color, we really have to talk about the other 0:06:37.520 --> 0:06:42.680 structural barriers that relate to health and disease. So, for instance, 0:06:42.760 --> 0:06:46.280 with the COVID pandemic, there was a lot of press 0:06:46.279 --> 0:06:50.279 about how these are rates for initially so much higher 0:06:50.440 --> 0:06:54.160 and tribal communities such as my own, but those are 0:06:54.200 --> 0:06:56.760 not due to biological differences. They were due to things 0:06:57.040 --> 0:07:00.960 like our water rights being usurped from us, that we 0:07:01.000 --> 0:07:04.000 didn't have water to wash our hands, which is a 0:07:04.080 --> 0:07:09.200 key preventative measure for curbing viral transmission. Also, the fact 0:07:09.360 --> 0:07:13.680 that we have to drive ours one way just to 0:07:13.720 --> 0:07:18.880 get to a preventative health clinic. Technology is limiting our 0:07:18.920 --> 0:07:24.640 ability to detect these genetic differences across the genome. We 0:07:24.680 --> 0:07:29.480 don't have that much information yet, and to reduce all 0:07:29.520 --> 0:07:33.960 of these differences to just biology is just ignoring the 0:07:34.040 --> 0:07:38.840 beautiful diversity that's within all of our cultures worldwide. And 0:07:39.040 --> 0:07:41.680 that's just talking about the health component. I haven't even 0:07:41.800 --> 0:07:46.760 gotten into the genetic ancestral components. We'll get into that. 0:07:46.880 --> 0:07:50.360 Because this idea that genetics that we interpret them in 0:07:50.400 --> 0:07:54.760 a reductive and deterministic way, i e. The genome tells 0:07:54.840 --> 0:07:59.120 us everything, that data set is us. You're rejecting that, 0:07:59.280 --> 0:08:02.400 and you're reject it in the health conversation. But you know, 0:08:02.440 --> 0:08:06.000 as a Native American in particular, why are you rejecting 0:08:06.040 --> 0:08:10.920 this idea of genetic determinism for ancestry. Well, let's think 0:08:11.040 --> 0:08:14.840 back just a few years ago. This is Elizabeth Warren. 0:08:15.040 --> 0:08:18.800 What are the facts you can absolutely have a Native 0:08:18.800 --> 0:08:21.960 American ancestry in your pedigree. Oh my gosh, it feels 0:08:21.960 --> 0:08:24.240 like actually forever ago. But a few years ago when 0:08:24.280 --> 0:08:29.360 Elizabeth Warren announced that she had a DNA test that 0:08:29.440 --> 0:08:36.680 showed her supposed Native American ancestry. And Okay, let's unpack 0:08:36.760 --> 0:08:39.200 this a little bit further. Okay, let's go there, let's 0:08:39.240 --> 0:08:43.280 get it. Let's go yes right now. Due to historical 0:08:43.400 --> 0:08:46.800 distrust and I'm not talking about centuries ago or decades ago, 0:08:46.840 --> 0:08:49.960 I'm talking about just in the past few years, Native 0:08:49.960 --> 0:08:54.800 Americans in the US have largely not contributed their genetic 0:08:54.840 --> 0:09:01.880 information to research or willingly to genetic ancestry tests. So 0:09:02.040 --> 0:09:05.760 because of that, there's not that much information that links 0:09:06.160 --> 0:09:10.440 specific genetic factors to a particularly US tribal nation. So 0:09:10.480 --> 0:09:13.360 where do they get that information from. They get it 0:09:13.559 --> 0:09:18.760 from openly available bio markers from large scale diversity projects 0:09:18.880 --> 0:09:23.040 about twenty years ago. We're here to celebrate the completion 0:09:23.080 --> 0:09:26.320 of the first survey of the entire human genome. Without 0:09:26.360 --> 0:09:29.480 a doubt, this is the most important, most wondrous map 0:09:30.080 --> 0:09:34.840 ever produced by humankind. Today's announcement represents more than particularly 0:09:34.840 --> 0:09:40.720 the Human Genome Diversity Project and also National Geographic Magazine 0:09:40.720 --> 0:09:44.640 did the Genographic Project. And these were two projects that 0:09:44.679 --> 0:09:49.480 were meant to sample worldwide populations, particularly indigenous peoples before 0:09:49.559 --> 0:09:54.000 we disappeared. And I'm doing the air quotes, so there's 0:09:54.040 --> 0:09:58.640 this huge rush to sort of sample as many indigenous 0:09:58.720 --> 0:10:00.959 peoples before we were wiped off the base of the 0:10:01.040 --> 0:10:05.160 planet due to colonial factors, no, not caring the fact 0:10:05.200 --> 0:10:07.400 that our ways of life were disappearing. Now, we wanted 0:10:07.400 --> 0:10:10.320 their genomes before we were dead and gone. And this 0:10:10.360 --> 0:10:14.040 is like the same rhetoric that colonists have been trying 0:10:14.080 --> 0:10:17.800 to cause our extinction for centuries, and this is just 0:10:17.840 --> 0:10:21.240 like the genetic version of that. So what ended up 0:10:21.240 --> 0:10:28.319 happening is researchers went into remote communities in central Amazon 0:10:28.480 --> 0:10:34.480 area in Mexico in Central America, and they collected bio 0:10:34.520 --> 0:10:37.440 markers from indigenous peoples, and they promised that they were 0:10:37.440 --> 0:10:41.640 going to bring them medicines and deliver cures for conditions 0:10:41.679 --> 0:10:46.959 that besieged them. They took their blood, and did they 0:10:47.120 --> 0:10:52.160 uphold their promises. No. So when you think about tests 0:10:52.720 --> 0:10:57.880 like twenty three and ancestry, they're using these openly sourced 0:10:57.880 --> 0:11:05.200 bio markers from disinphra chries, disempowered, exploited indigenous groups that 0:11:05.240 --> 0:11:09.199 are south of the US border, and they're using these 0:11:09.240 --> 0:11:13.480 markers and also Asian biomarkers, which is a totally different 0:11:13.480 --> 0:11:21.320 part of the world to infer statistically statements about US ancestry, 0:11:21.440 --> 0:11:26.400 forgetting the fact that every single indigenous group has their 0:11:26.440 --> 0:11:32.800 own distinct cultural and genetic histories. And those bio markers 0:11:32.880 --> 0:11:38.280 that supposedly realified a story by Lizeth Warren, those biomarkers 0:11:38.360 --> 0:11:40.679 don't really show anything except for the fact that she 0:11:40.960 --> 0:11:46.920 perhaps had a statistical relationship with one of maybe fifty 0:11:47.000 --> 0:11:51.840 people in the Mexico region of the globe. Has nothing 0:11:51.840 --> 0:11:55.920 to do with the answert she is trying to claim. 0:11:56.000 --> 0:12:01.080 And it's also horrible because Native American rights are tied 0:12:01.640 --> 0:12:07.319 to blood quantum rules and blood quantum rules are usually 0:12:07.720 --> 0:12:12.640 derived by a person's lineage, like can they prove that 0:12:12.720 --> 0:12:17.720 they have a direct grandmother or a parent or more 0:12:18.000 --> 0:12:21.079 even distant ancestor who was a member of that community. 0:12:22.920 --> 0:12:27.840 But these are kinship structures derived from genealogy, not by blood. 0:12:28.080 --> 0:12:30.920 It's just a misno more that they're called blood quantum rules. 0:12:31.480 --> 0:12:34.640 But let's remember the reason why blood quantum rules started. 0:12:34.920 --> 0:12:39.160 It was a means for deluding our rights and our 0:12:39.200 --> 0:12:44.640 claims to sovereign resources that are actually supposed to be 0:12:44.679 --> 0:12:47.880 given to us by treaty in exchange for our lands. 0:12:49.880 --> 0:12:54.160 And by using these unequated rules, were deluding our rights 0:12:54.200 --> 0:12:58.040 to those claims and then to reify it by these 0:12:58.120 --> 0:13:02.320 genetic ancestry tests. It's just horrible. So I want to 0:13:02.559 --> 0:13:06.840 pause and rewind for a few thoughts. The theft of 0:13:07.040 --> 0:13:15.120 blood is literally vampiric, right, and the idea of continuing 0:13:15.720 --> 0:13:19.520 to extract and exploit, which are fancy words for steel, 0:13:20.120 --> 0:13:24.440 is a continuation of colonial behavior. So it sounds to 0:13:24.440 --> 0:13:27.000 me like what you're describing as a as a vampiric 0:13:27.640 --> 0:13:32.040 genetic colonialism. It's interesting that you use that term vampiric 0:13:32.160 --> 0:13:36.840 because when these large scale diversity projects were announced, global 0:13:36.880 --> 0:13:40.120 Indigenous populations at least six hundred of them actually went 0:13:40.160 --> 0:13:44.120 to the United Nations and actually asked for the cessation 0:13:44.200 --> 0:13:48.920 of these studies, and particularly called the genographic project a 0:13:49.040 --> 0:13:54.200 vampire project because it was akin to vampire bats coming 0:13:54.240 --> 0:13:57.160 in the middle of the night, stealing their blood and 0:13:57.200 --> 0:14:00.360 then leaving when the morning came. And that's what felt like, 0:14:05.960 --> 0:14:09.720 what do Indigenous people lose out on if they don't 0:14:09.800 --> 0:14:12.240 have their data in their own hands, if they don't 0:14:12.280 --> 0:14:16.640 have that data sovereignty. Well, first of all, if they 0:14:16.640 --> 0:14:19.680 are not in charge of their data and they don't 0:14:19.720 --> 0:14:23.600 have the same saying data decisions, then how are they 0:14:23.640 --> 0:14:27.640 going to call for accountability to ensure that they're able 0:14:27.680 --> 0:14:31.760 to benefit from the collection of their information. But then 0:14:31.880 --> 0:14:35.200 also we have to worry about whether or not d 0:14:35.360 --> 0:14:40.280 NA claims to indigenousity will be undermined. So, for instance, 0:14:40.600 --> 0:14:45.440 there's a number of scholars that are tracking descendants of 0:14:45.640 --> 0:14:50.480 Mate populations and First Nations Canada people that claim to 0:14:50.600 --> 0:14:55.080 be members of tribal communities but really have no evidence, 0:14:55.720 --> 0:14:59.480 but are able to claim rights that should be only 0:14:59.680 --> 0:15:03.320 to Indigenous people's. And what that effectively does is that 0:15:03.560 --> 0:15:07.360 undermines the strength of communities because it's not like these 0:15:07.480 --> 0:15:12.400 rights to resources are unlimited. It's very finite. There's like 0:15:12.440 --> 0:15:14.880 a flip side version of this with the one drop 0:15:15.000 --> 0:15:19.160 rule in US history about who's black, and that was 0:15:19.320 --> 0:15:22.360 used as a weapon to kind of exclude people from 0:15:22.400 --> 0:15:25.880 the resource of the majority population. Well, you're not white, 0:15:26.160 --> 0:15:29.600 therefore you go to the back of everything, every list. 0:15:30.200 --> 0:15:32.800 And there's an irony in the modern times when we 0:15:32.800 --> 0:15:36.560 have so much language about inclusivity and equity and diversity, 0:15:36.600 --> 0:15:41.480 like the whole trifecta, that the resources of a colonial 0:15:41.600 --> 0:15:47.120 government will be used to determine membership in an indigenous community, 0:15:47.160 --> 0:15:50.440 and that at the very heart of sovereignty, probably more 0:15:50.480 --> 0:15:56.320 than water or land, is self definition, right, self determination. 0:15:56.600 --> 0:15:59.080 And so if this outside authority, which you've got mad 0:15:59.120 --> 0:16:02.760 reason not to trust sto already now usurps your own 0:16:02.920 --> 0:16:08.280 membership rules based on questionable and certainly in complete science, 0:16:09.920 --> 0:16:11.960 that's real, messed up. That's that's where I landed. That's 0:16:12.160 --> 0:16:14.680 all that built up to. That's just real. Know that 0:16:14.760 --> 0:16:19.240 the cruelest joke is that US indigenous groups have taken 0:16:19.280 --> 0:16:21.920 this system that was meant to delude us from our 0:16:22.040 --> 0:16:26.240 rights to resources, and now we have used that same 0:16:26.320 --> 0:16:30.800 system to define ourselves and even exclude others that should 0:16:30.840 --> 0:16:35.080 be a part of our community. That is just intrinsic 0:16:35.080 --> 0:16:41.960 colonialism reflected upon ourselves and the worst way possible. Wow Wow, 0:16:43.840 --> 0:16:52.920 We'll be right back. What does your denay and Navajo 0:16:52.960 --> 0:16:57.400 identity mean to you beyond your DNA? So if I 0:16:57.440 --> 0:17:02.040 were to give my full introduction, Dini bazade I would 0:17:02.040 --> 0:17:11.760 say can the Cheney, initially the Nain and then Crystal 0:17:11.840 --> 0:17:16.199 Sissy Hitia. So what I have provided to you in 0:17:16.240 --> 0:17:21.879 the first two three sentences as a description of my 0:17:22.000 --> 0:17:26.040 four clans, so everyone that my mother, my father, and 0:17:26.080 --> 0:17:30.000 my grandparents are related to. And then I introduced myself. 0:17:31.640 --> 0:17:37.240 So I have given you my entire lineage through the 0:17:37.600 --> 0:17:41.760 time since Navajo people have existed, everyone that I'm related to, 0:17:42.680 --> 0:17:48.240 And by listening to my introduction and introducing ourselves to 0:17:48.280 --> 0:17:53.080 each other, we get kinship ties like oh, this person 0:17:53.240 --> 0:17:56.800 is my same clan, we are brothers and sisters, or 0:17:56.920 --> 0:17:59.840 they are a related clan, this person is my cousin 0:18:00.359 --> 0:18:02.800 in a way, and so we don't have like the 0:18:02.880 --> 0:18:07.480 same nuclear family structures as we do in dominant cultures. 0:18:07.880 --> 0:18:13.560 We have expanded kinship structures, and that's just beautiful because 0:18:13.720 --> 0:18:18.480 it means that our family is just more as an 0:18:18.480 --> 0:18:23.280 expanded unit. It also strikes me that the way we 0:18:23.320 --> 0:18:27.000 introduce ourselves in dominant culture in the West is first person, 0:18:27.080 --> 0:18:31.680 singular and disconnected from others. It's like, I'm very Toonday, 0:18:31.800 --> 0:18:36.880 whatever next. And so your introduction and self definition was 0:18:36.960 --> 0:18:40.200 in relation to those who may not even still be here. 0:18:45.760 --> 0:18:47.240 I want to I want to get a little more 0:18:47.280 --> 0:18:50.480 context on you. Tell me about your home. What was 0:18:50.520 --> 0:18:53.480 it like growing up and where did you grow up? Okay, 0:18:53.520 --> 0:18:56.760 these are great questions, and I first want to tackle 0:18:56.840 --> 0:19:00.840 the assumption that all Indigenous peoples are based in their 0:19:00.880 --> 0:19:03.960 home communities, because we are not. We have been forcibly 0:19:04.040 --> 0:19:09.680 displaced economically and just geographically. And in this case, that 0:19:09.840 --> 0:19:14.240 is my family history. My mother comes from Chanta, Arizona, 0:19:14.400 --> 0:19:17.320 the northern region that's just pretty much closely Utah border. 0:19:17.520 --> 0:19:20.360 And then my father comes from the Loop area, which 0:19:20.359 --> 0:19:24.280 is in central Arizona. And he actually worked in the 0:19:24.359 --> 0:19:28.040 Phoenix Indian Medical Center, which is the largest Indian health 0:19:28.080 --> 0:19:31.760 service clinic in the entire US, but it's based in Phoenix. 0:19:32.240 --> 0:19:34.800 But he wasn't a doctor. Neither of my parents went 0:19:34.960 --> 0:19:39.200 to college, so I'm a first generation student. Even though 0:19:39.240 --> 0:19:43.600 I was more economically well situated than other members of 0:19:43.600 --> 0:19:46.880 my family. I lived in the ghetto of West Phoenix, 0:19:48.840 --> 0:19:51.639 and anyway, I was like the only Native kid in 0:19:51.920 --> 0:19:55.200 all my levels of school. It wasn't until I hit 0:19:55.840 --> 0:20:00.119 really high school and college that I started interacting with 0:20:00.240 --> 0:20:05.400 other Native American students, and the reception was cold. Like 0:20:05.480 --> 0:20:09.720 I was non rez I was non res Translate that 0:20:09.840 --> 0:20:13.000 for me, Oh, I was not born and raped. I 0:20:13.080 --> 0:20:16.040 was on a reservation. I didn't have to say little experience. 0:20:16.760 --> 0:20:20.600 I was not as hardcore as they were. I was 0:20:20.640 --> 0:20:23.280 an apple right on the outside, white on the inside. 0:20:23.640 --> 0:20:26.920 Oh you had apples, we had oreos. Black on the outside, 0:20:26.920 --> 0:20:29.320 white on the inside. It's why is it always food? 0:20:32.119 --> 0:20:36.000 I went to one of the top ranked biomedical research 0:20:36.080 --> 0:20:41.840 universities in the world, and God, it was blatantly obvious that, 0:20:42.000 --> 0:20:45.439 despite my accomplishments, that I was recruited because I was brown, 0:20:45.520 --> 0:20:49.120 and particularly because I was Native American. They weren't interested 0:20:49.160 --> 0:20:52.159 in my training or interested in the fact that I 0:20:52.240 --> 0:20:57.840 wanted to contribute something to my own people. You've heard 0:20:57.840 --> 0:21:02.119 the term quarter like crisis. Okay, it was about that age, 0:21:02.400 --> 0:21:05.520 and I was questioning a lot about my identity as 0:21:05.600 --> 0:21:10.480 an Indigenous person occupying a white dominated space of academia 0:21:10.640 --> 0:21:16.440 and science as a budding researcher, did I have the 0:21:17.200 --> 0:21:21.080 wherewithal to make it as a scientist. And then also 0:21:21.520 --> 0:21:24.199 just in terms of my own life land, if I 0:21:24.240 --> 0:21:28.440 were to start again from scratch as a graduate student, 0:21:29.040 --> 0:21:33.680 would I be successful or am I just delaying some 0:21:34.760 --> 0:21:40.160 inevitable truth that maybe I wasn't good enough. That type 0:21:40.160 --> 0:21:43.320 of reckoning is hard to do when in you're young 0:21:43.359 --> 0:21:46.280 and mid twenties, and that's something that I feel like 0:21:46.520 --> 0:21:49.560 scholars of color have at some point in their careers. 0:21:53.280 --> 0:21:58.000 But what spurred my change was the realization that if 0:21:58.000 --> 0:22:00.280 I were to complete my PhD in cancer by ology, 0:22:00.359 --> 0:22:05.080 and if I were to invent something that fundamentally changed 0:22:05.560 --> 0:22:10.960 cancer therapies, and whatever I invented went through all of 0:22:11.000 --> 0:22:14.600 the phases of clinical trialing and made it to market, 0:22:14.920 --> 0:22:19.160 there was like a heart wrenching feeling that it wouldn't 0:22:19.200 --> 0:22:25.360 benefit my own people, That it would benefit rich, effluent 0:22:25.480 --> 0:22:30.000 people first, long before it would benefit my own people. 0:22:31.720 --> 0:22:35.600 As a brown person, and the sciences like I need 0:22:35.640 --> 0:22:39.399 to do better, and I actually ended up switching my 0:22:39.520 --> 0:22:45.159 field to bioethics and genetics and definitely feel the direct 0:22:45.200 --> 0:22:52.600 impact of my research. Now, you so generously described me 0:22:52.800 --> 0:22:56.000 as a scientist and an activist in your introduction of me, 0:22:56.480 --> 0:23:00.560 and being called a scientists activists is actually some thing that, 0:23:00.800 --> 0:23:03.560 depending on who you're talking to, can either be a 0:23:03.600 --> 0:23:08.960 compliment or an insult, because supposedly people feel like science 0:23:08.960 --> 0:23:14.639 should be objective and that there is no room for 0:23:15.440 --> 0:23:21.640 conversations about racism and inequities in science, and to state 0:23:21.760 --> 0:23:25.959 anything otherwise is apparently anti science. I can't tell you 0:23:26.000 --> 0:23:29.760 how many times I've been called as a scientist anti 0:23:29.760 --> 0:23:35.119 science by people who had no idea anything about science 0:23:35.160 --> 0:23:41.679 as a field. We have to really question when we 0:23:41.720 --> 0:23:47.960 over it economize science versus anti science, or even science 0:23:48.760 --> 0:23:55.120 as being equated with objectivity, because when we take it apart, 0:23:55.840 --> 0:24:01.360 when we're talking about humans, humans are messy. Science itself 0:24:01.720 --> 0:24:07.600 is messy. It is not objective. It is completely dependent 0:24:07.800 --> 0:24:12.600 on biases. Decisions that are made at the federal level 0:24:12.840 --> 0:24:17.159 of what types of science are worthwhile for funding or 0:24:17.240 --> 0:24:22.040 in terms of what types of research is deemed worthwhile 0:24:22.119 --> 0:24:26.520 those are non objective decisions. Yeah, we all bring our 0:24:26.560 --> 0:24:29.240 perspective to that stuff and have the idea there's a 0:24:29.280 --> 0:24:32.760 neutral thing floating out in the demilitarized zones of all 0:24:32.800 --> 0:24:35.880 of our minds called science is a myth. So thank 0:24:35.920 --> 0:24:39.560 you for breaking that down. A lot of folks who 0:24:39.600 --> 0:24:43.000 look at the tech world they see algorithmic bias. They 0:24:43.080 --> 0:24:47.000 see hiring algorithms which don't have the right data leading 0:24:47.000 --> 0:24:50.359 to the exclusion of women. They see policing algorithms sending 0:24:50.400 --> 0:24:53.240 people back to prison who really are ready to come 0:24:53.400 --> 0:24:59.959 back home. There's medical research value to having diversity of data. 0:25:00.080 --> 0:25:03.400 Yet you've raised a lot of red flags around this 0:25:03.480 --> 0:25:08.479 call for data diversity. Why should we be concerned and 0:25:08.520 --> 0:25:11.840 what's your experience as an indigenous person taught you? So? 0:25:12.000 --> 0:25:16.000 Diversity and inclusion is not the same as equity. We 0:25:16.080 --> 0:25:20.199 have to make sure that those terms are disentangled and 0:25:20.240 --> 0:25:23.480 that we really pay close attention to what we mean 0:25:23.520 --> 0:25:27.040 by equity. But then the question is to what end 0:25:28.400 --> 0:25:34.840 and who actually benefits? And in the scenarios that I described, 0:25:35.800 --> 0:25:39.800 twenty plus years after data has been extracted from Indigenous peoples, 0:25:40.680 --> 0:25:43.960 the people who have largely benefited are not the community 0:25:43.960 --> 0:25:48.280 members that provided the blood. It's for profit companies like 0:25:48.359 --> 0:25:55.440 ancestry and three and me. Ancestry since seventeen they posted 0:25:56.000 --> 0:26:01.520 every holiday quarter profits over a billion dollars, So this 0:26:01.600 --> 0:26:06.080 is reflected of people wanting to gift direct to consumer 0:26:06.080 --> 0:26:12.080 genetic ancestry tests as Christmas gifts, literally paying to give 0:26:12.200 --> 0:26:16.399 up your data to feed the algorithms that these companies 0:26:16.440 --> 0:26:20.600 are trying to develop. And then recently Ancestry was acquired 0:26:20.720 --> 0:26:25.800 by a venture capitalist firm for six billion dollars. Now 0:26:26.000 --> 0:26:30.400 twenty and three and Me also has interest in collecting 0:26:30.680 --> 0:26:35.960 Bible markers for Native American people's. These companies and other 0:26:36.160 --> 0:26:42.320 genetic ancestry companies have expressed interest in creating Native American 0:26:42.520 --> 0:26:49.359 specific platforms so that they can more accurately assess what 0:26:49.560 --> 0:26:55.639 percentage membership you are by blood. If we think about 0:26:56.640 --> 0:26:59.840 what we know about genetic variants contribute to disease, the 0:27:00.080 --> 0:27:03.560 lois hanging fruit has already been picked. We already know 0:27:03.640 --> 0:27:10.280 the common variants contributing to things like gastric cancers and diabetes. 0:27:11.119 --> 0:27:15.359 The next sort of innovation is going to be in 0:27:15.520 --> 0:27:19.240 rare variants or in variants that haven't been yet discovered 0:27:19.520 --> 0:27:23.560 in populations like our own and that's also like stay 0:27:23.640 --> 0:27:28.119 tuned to the term like discovery, right, because these terms 0:27:28.119 --> 0:27:34.879 are very intricately aligned with colonial language of discovery and 0:27:35.080 --> 0:27:39.159 of our people's Hello Columbus. Yeah, exactly. We have to 0:27:39.359 --> 0:27:42.480 really think about these direct parallels when we talk about 0:27:43.240 --> 0:27:49.920 vanishing populations and we talk about discovering variation. So it's 0:27:49.960 --> 0:27:54.280 interesting a lot of these drives for collecting data from 0:27:54.920 --> 0:27:59.760 diverse groups is tied with these long term aims and 0:28:00.640 --> 0:28:04.760 some today down the road, precision and genomic medicine is 0:28:04.840 --> 0:28:09.440 going to improve health for all, but it's the pathway 0:28:09.520 --> 0:28:12.800 is not clear. I want to give a really old 0:28:12.840 --> 0:28:16.200 reference to a South Park episode? Can I do that? Yes? 0:28:16.359 --> 0:28:19.400 You just you opened up my heart? I love South Park. 0:28:19.520 --> 0:28:23.520 Let's go okay, So keep in mind I haven't watched 0:28:23.520 --> 0:28:26.320 the South Park in years, but there's a classic episode 0:28:26.320 --> 0:28:29.680 with the underpants gnomes co lactant kind of pants. Just phose? When? 0:28:30.320 --> 0:28:35.480 So what's phase two? H what's phase two? Well? The 0:28:35.840 --> 0:28:41.320 thrill of profit? I don't get it. Yes, yes, phase 0:28:41.400 --> 0:28:49.400 one collect underpants, phase two question mark phase three profits. Yes, yeah, 0:28:49.520 --> 0:28:56.320 it's the same thing with precision genomics. It's like step 0:28:56.400 --> 0:29:01.880 one collect bio markers. From underrepresented people Step two question 0:29:01.920 --> 0:29:04.680 marks Scept three. They're supposed to be some benefits to 0:29:04.760 --> 0:29:08.720 prove to the individuals both no clear pathway and in actuality, 0:29:09.000 --> 0:29:12.280 the real direct benefit is to drug companies because they 0:29:12.320 --> 0:29:16.320 have a vested commercial interest in profiting from They're the 0:29:16.440 --> 0:29:23.200 underpants gnomes of genetics. Oh my gosh, you gotta keep 0:29:23.280 --> 0:29:27.800