129. Indigenous DNA

Episode 129

Quinn:
Welcome to Important, not Important. My name is Quinn Emmett, and this is science for people who give a shit. Folks, there's a lot going on out there. Our world's changing, being changed every single day. Seems like it's going faster every single day. There's good news though. You can take part in that change. You can affect that change. So I talk to the smartest, most impactful people on the planet to provide you with the inspiration and the tools you need to not only feel better, but to actively fight for a better future for everyone.

Quinn:
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Quinn:
In this week's conversation. What I wanted to do, and we're going to try to do is to better understand data privacy, data stewardship, and what it actually means for indigenous cultures in the future of biotech, questions like how do we design equity and equitable benefit into genetic research? And who gets to decide the parameters of the data collection and the research done on that data and whatever else comes from it? And why do we consistently find cooperation on these fronts so difficult? What does the future of precision medicine hold when we haven't done the hard work of tearing down the systemic barriers to wellness and more?

Quinn:
My guest is Krystal Tsosie. And I just want to say upfront here, how thankful I am for her time today. I learned so much, and I know that you will too. A reminder, you can send questions, feedback or guest recommendations to me on Twitter, @importantnotimp, or you can email me at questions@importantnotimportant.com.

Quinn:
My guest today is Krystal Tsosie, and together, we're going to explore a bunch of stuff, what biological data sovereignty means in context of the United States, in context of the hugely varied, I think, correct me if I'm wrong, which I hope you do the whole time, like 570-ish Native American tribes across the continental U.S. It is hopefully going to be a conversation about the future, which is coming fast and the past all at once. So low bar, we're already losing Krystal. This is perfect. Krystal, welcome.

Krystal Tsosie:
Hi, thank you so much. It's my pleasure to be here.

Quinn:
Well, we'll see how that goes. You can judge that at the end.

Krystal Tsosie:
My caffeination status hopefully will remain constant for the rest of the hour, but no promises.

Quinn:
What is your go-to? If you're like, "I got to be on for an hour.", what is your mechanism for getting ready?

Krystal Tsosie:
Oh, so French press coffee.

Quinn:
That will work.

Krystal Tsosie:
I'm not quite as busy as pour over, although I want to be. I just don't have a gooseneck kettle, and then I'll make a pot of that and then ice it. And then I actually do the thing where I'll freeze leftover coffee into an ice cube tray. That way, when the ice melts, it doesn't dilute your coffee and actually will contribute more caffeine as the day goes on.

Quinn:
You are nothing if not a scientist. That is amazing. A friend, one of my best friends, who we're going to actually possibly talk about his dad. It's a whole thing. He taught me, do you know what pesto is? It's like, sort of, it's an Italian sort of sauce. It's like a pine nuts and anyways.

Krystal Tsosie:
A lot of garlic.

Quinn:
Yes, yeah, lot of garlic and basil, his thing was you make it, you put in the ice cube trays, but so it doesn't go rancid, you put olive oil on the top and then same thing, you pop it out and you've got fresh pesto. It's amazing. But yours is for coffee. I got to teach that to my wife. Her heart does not start beating until I hand her coffee in the morning. So I know it's just-

Krystal Tsosie:
I mean, great her heart eventually gets going eventually.

Quinn:
Eventually, but what happens if I forget to bring it if the kids are gone? Who can know? She just doesn't wake up, amazing.

Krystal Tsosie:
Don't make this recording available to any law enforcement agencies or any insurance firms.

Quinn:
100%. We're just going to take all this out. Krystal, if you could real quick tell the people who you are and what it is that you do.

Krystal Tsosie:
Wow, okay. That's a lot. So yeah, everyone, [inaudible 00:05:14] I basically just told you [inaudible 00:05:19] in Navajo language, everyone, that I am related to all my ancestors on both sides of my family, and then of course introduced myself. And then in terms of who identify and how I identify, first of all, like first and foremost, I'm indigenous to the U.S. Southwestern region, particularly Navajo Nation. And then after that, I'm a geneticist and also a bioethicist. I have backgrounds in bioethics and also in genetic epidemiology and public health. And I'm finishing my Ph.D. at Vanderbilt University in genomics and health disparities. I'm actually transitioning to a faculty appointment as assistant professor at Arizona State University, where I'll be the first indigenous geneticist at that institution. And then also on top of all that, I'm co-founder and also ethics and policy director at the Native BioData Consortium, which is the first indigenous biological data repository for tribes in the U.S.

Quinn:
Krystal, I'm exhausted every day and I have a podcast. You've got like 40 impactful and important things you're doing every day. That's incredible.

Krystal Tsosie:
Thanks. When you're not, when there aren't that many indigenous peoples in the sciences though, you tend to wear a lot of hats, especially in genetics. There is just so much going on in the world and in science and technology related to genetics, genomics, the collectivization of data and data privacy and ethics. It's a fascinating time to be in, very scary, but fascinating.

Quinn:
100%, 100%. I mean, I think that's kind of the ethos of hopefully what our conversation is today, for sure, which is like, it is a heck of a moment for all of those things. Thank you for sharing that. I appreciate it. We usually start with one important question. Again, I'm not sure if you've listened to any other episodes or not. It's a pretty, I think you could use the word preposterous question for sure. It's both sincere, but also completely tongue in cheek. So answer however you would prefer or tell me to go away. And the question is Krystal, why are you vital to the survival of the species?

Krystal Tsosie:
Well, am I actually?

Quinn:
Great question.

Krystal Tsosie:
Oh, there's an underlying premise there that I am.

Quinn:
Not necessarily.

Krystal Tsosie:
Before I can answer why.

Quinn:
Most people just laugh at me, but please continue.

Krystal Tsosie:
Can I assume that you've seen the movie Idiocracy?

Quinn:
Oh, yeah, for sure.

Krystal Tsosie:
Okay. So if we want to assume that I at least provide societal benefit and now that I have survived past my adolescence years, I know that I don't make ridiculously dumb decisions related to my own welfare and wellbeing, that maybe I do have some beneficial traits that could serve for the continued propagation of species. However, I don't want that responsibility. No, I don't feel like being pregnant in perpetuity. But have someone else have that responsibility.

Quinn:
I love that answer. Thank you. That might be our first Idiocracy reference, which is actually kind of surprising. Boy, does that one hold true these days. Awesome. Thank you so much for sharing that. All right, so Krystal, like I said before, I just want to, for a brief moment, explain why I wanted to have this come conversation today. So my wife lovingly describes this as my climate change podcast, as she puts it onto people's phones. But that's only, it's a large part of what we do because it touches so many different things, especially these days. But we do talk about a lot of big systemic issues and questions here as we kind of call it the make or break stuff. And many of the big issues when you really drill down, which we try to do from air pollution to clean water or maternal health, or the lack of black doctors and nurses to climate investing or AI ethics, biotech, I've increasingly found, and this is obvious to people who've been doing this for a while, but it's increasingly more obvious and necessary to me to work on this level.

Quinn:
But there are these common denominators. It's not really about the medical outcome or an algorithm, a particular algorithm or some mutual fund return, or a data set or water pipe or some deep sea minerals that we need for electric batteries. Just like it's not really about who you see or don't see up on the screen in a Disney movie. The underlying factors behind all of them, I guess it's one, but it's sort of twofold is who is in the room writing and building these things. Who governs them, and most specifically in the American case, who benefits from each of these things, from water pipes that deliver clean water or not, or a lack of representation in the medical field or air pollution, plastic factories, whatever.

Quinn:
And I want to be fully transparent that this recognition of this piece of the puzzle, if not the puzzle itself, I feel like I can tread in this water, because I'm a liberal arts major who loves to ask questions, but there's no question that the practical investigation of it and the exploration of it was delayed in both in my life, and I guess in this show because of a huge amount of privilege. I cannot really change where I'm from or what I look like, but it's all born from this colonialism obviously. I'm literally from colonial Williamsburg. But it has made me reevaluate who I talk to and how I listen to them and examining this moment and the work that we do and any analysis or action steps.

Quinn:
And so, as we barrel into like you were talking about this wildly sort of exciting, but uncertain future biotech and what we do in biology and who gets to do it and who gets the profit from it, same thing for AI. They really linger as these two sectors that could get out of hand real fast, unless we approach them in a way more inclusive and cooperative way. So when I learned about your work, which is again like 12 different things, it was very clear that it was necessary to have at least one conversation, because I feel like I still have just so much to learn about this space and from you. So again, I do want to thank you in advance for sharing your incredibly precious caffeinated time with me and the folks out there. Krystal, I actually wanted to start, if we could go back just a little bit and talk about preeclampsia.

Quinn:
So my mom, before she had me, there's 4.5 years between my older brother and me, they lost a baby pretty late in between us, which is why there's that gap because of preeclampsia and any sort of miscarriages is super rough. I'm just a man in my own family, and the few that my wife and I suffered through were just brutal and obviously so much worse for her. When that happened to my parents, it was math, carry one, 1980 or so. There's no internet, there's no real genetic testing, but still, their doctor, who's now my best friend's father, trudged through a snowstorm with his medical textbooks to their house to explain, "Hey, here's what happened. And it doesn't mean you're never going to have another kid as painful as it was."

Quinn:
But 40-ish years later, millions of people in America, however you identify, don't get anything remotely close to that kind of attention from the medical industry or from their own doctors. We're aware of that, much less women and women of color. And we talked about that with Rep. Underwood in episode 106 about black maternal health and Sarafina Nance and Dr. Elizabeth Ruzzo about birth control. Krystal, why did you choose for your dissertation to investigate the impact of PE, if we can call it that, on American Indian women? Why did you start there with everything else you've got going on?

Krystal Tsosie:
Well, actually I didn't start there. I started with an even more broad question as to why indigenous peoples generally don't participate in genetic studies. And it just so happened that one of the longest ongoing genetic studies in a U.S. indigenous community happens to be on preeclampsia. So actually, can we go back a little bit further in my story?

Quinn:
To be clear, you're in charge

Krystal Tsosie:
Cool, so I actually started, it's really horrible to start this question that is truly impactful with, unfortunately, a very egocentric question or self-centric question about my own career in genetics as an indigenous person. But if we go back even like a decade prior to when I actually started doing preeclampsia work, my intent and purpose was actually to become a cancer researcher. And I actually was pretty successful as an undergraduate post baccalaureate researcher in that I had a couple patents related to microbiology or micro, so you've heard of nanotech what I've done with micro scale solutions to our targeted chemotherapeutics.

Krystal Tsosie:
And I really wanted to go to cancer biology, even went to Hopkins University. I had my own pick of any institution in the world, and I hated it, because the field of cancer biology is not only oversaturated, but I was witness to scientists that were basically having an ego measuring contest as to how many drug patents they had in their wall. And when we think about cancer biology and what drives matters of research, it's money, and it is drug innovations that relate to the FDA. And I just had this sickening feeling that even if I were to be successful in developing a cancer therapeutic, that chances are it would probably benefit people that were already affluent, who had already had access to adequate healthcare resources.

Krystal Tsosie:
And it wouldn't be my own people, the native people that I grew up with, which were living in rural communities and relying on the Indian health services for their healthcare and not really getting access to the top tier drugs, unless they're paying for out of pocket at exorbitant rates. And I just had this sickening feeling of what am I doing as a native person in the field of cancer biology but not could be benefiting my own people. And that actually led me back to grad school for my first master's in ethics, in bioethics, because I actually wanted to switch to a career in law. And then this is where I started learning more about genetic controversies related to indigenous participation in genetic studies and all of these different lawsuits and controversies in which indigenous peoples felt like they were being exploited for the genomic data, for the "good, greater good of society and research", but the research wouldn't be beneficial to them.

Krystal Tsosie:
And then I could already see the writing on the wall even like 10 years ago that there's going to be this huge emergence in rush for the collectivization of genetic data across all data sets and indigenous peoples will still unfortunately continue to be disenfranchised unless we had more indigenous geneticists in the field advocating for the communities. So I actually came to the Vanderbilt University because it had like the perfect breeding ground for the skills that I wanted to gain, which was in epidemiology and data science and looking at genetic data sets for conditions that had broad skill, health diverse disparities. And I actually centered on a research lab that focused on uterine fibroids in African American women. And the uterine fibroids is a benign tumor that is increasingly prevalent in African American women.

Krystal Tsosie:
And there's a huge disparity and its prevalence is I think at least four to one. For every woman of European ancestry, four women of African ancestry will have a uterine fibroids at some point in her life. And it's something that's of huge medical concern because it's costly to treat, and it is related to all these different maternal and child outcomes when a woman is pregnant with uterine fibroids and is just something that really speaks to almost the erasure of an invisibility of women of color in terms of seeking general medical care for what has usually been unfortunately ignored. There's been a huge amount of criticism in that we have this wealth of understanding of conditions and understanding of disease related to men's health, but not women's health. So anyway, as I'm sitting in my computer, my desk at a computer terminal, looking across all these genomewide data sets with millions of SNPs or single nucleotype polymorphisms across the genome, across hundreds of thousands of women in different multiethnic cohorts, I just, as a native American, I was looking well, how many Native Americans are in the study? Time and time again, it was zero.

Krystal Tsosie:
And I learned that Native Americans again, are not participating in genetic studies and their treatment is effectively out of form of erasure. They're either not included in studies and therefore were not getting this wealth of understanding of health outcomes related to Native Americans, or even sometimes what happens is geneticists who don't understand that Native Americans are not just this unique monolithic identity, just pull us all into the same data set, ignoring our unique genetic histories. And then they'll, just to get an adequate sample size to depth association and these inferences could be flawed. They're meaningless for us because they're not actually based off of meaningful measures of like who we are as people. And that's always hard to determine. And also there just felt something a little bit again, I felt this question that the pit of my stomach of what are we doing in data science when we're just thinking about collectivizing this increasingly larger aggregated data sets of, and just pushing out a paper. The pipeline, I'm saying this very lovingly but also sort in a critiqued fashion about the field of data sciences, that you almost, you remove the human element of the science and the work.

Krystal Tsosie:
And you just start treating people as anonymous numbers and you want to just increasingly collect more and more of data. And that's kind of like the big hunger machine of the big data era is that you need more data to feed into these logistical models in order to detect these associations. But what ends up happening is you get these statisticians who are just thinking in terms of numbers, in terms of their ability to run a statistical test of association. But then it's almost like that the health underlying health question doesn't even matter, like some statisticians might have their pet phenotype or condition of interest, but the pathway then between somebody using somebody's data and then how it actually translates to a direct health benefit is not clear. But instead, we get more and more funding agencies that are collecting more and more data and preempting the collectivization of data sets, but not asking the question of, well, if this is supposed to affect and benefit health outcomes for people, then why aren't we talking more about translating these direct benefits to communities that are providing the data.

Krystal Tsosie:
So that actually brought me to this study related to preeclampsia. There really aren't that many community engaged approaches related to genetics that are long ongoing in existence still in indigenous communities in the U.S. And it happens that the one that I really wanted to work with, which was based in a tribal community was related to preeclampsia. Yeah, that's kind of how I got to that part of the story.

Quinn:
No, I really appreciate that background. I mean, that's so interesting. I mean, I think like when you're growing up, you're like, "What am I going to do?" And you always, I don't know if it's some product of like the '50s or something, but it's easy to imagine that you're picking your job for the rest of your life, but in reality, that's just not how it works. Sometimes it's serendipitous, sometimes it's process of elimination. Sometimes, there's some sort of revelation or a moment that leads you in one direction or another and you go, "Oh, I'm going to do a nonprofit thing. I can do that. I'm really excited.", or whatever it might be or scientist. I mean, again, I went to a liberal arts university.

Quinn:
It was very privileged of course, to be able to go there. And a lot of the students who go there very similarly, but it was always funny. And this was not me, because I'm not that intelligent in this capacity. The kids that came up and were their whole life, like I'm going to be a doctor, I'm going to be a doctor. I'm going to be a doctor. And then they take some philosophy class or whatever it might be. And their mind is blown. And all of a sudden, they become a professor or whatever it might be. And you just never know what you're going to be exposed to and how that's going to influence your thing. And again, it could change even later. You could apply it in some different way. So anyways, I really appreciate you sharing that. It's interesting, the way that these things take us.

Krystal Tsosie:
Yeah, it really is. I remember in fourth, third grade or something like that, we had to draw a picture of ourselves in our intended career path. I drew myself with like a little suit and a briefcase and I thought it was very clear that I was going to be a lawyer and my teacher, who I mean, she's such a sweet person. She's like, "Oh, you want to be a teacher just like me."

Quinn:
Did you break it to her?

Krystal Tsosie:
Teachers are amazing. I didn't, I just, I went ahead and just nodded along because I didn't want to insult her and teachers are amazing. Oh my God, they are so amazing and overworked and underappreciated. But at that time, I didn't want to become one.

Quinn:
Yeah, no, I mean yeah, my mom was a kindergarten teacher. It's like pay them $1 million and they should be all treated incredibly. It's preposterous.

Krystal Tsosie:
I know. I mean, just as a brief offshoot, I mean when COVID happened, all of a sudden we had this huge appreciation that parents had for teachers that didn't exist beforehand. And now we are returning back to normal, whatever that means. And now we're not fixing all of the issues that caused this potential teachers to continue in the field or I don't know. We just removed the love of teaching, yeah.

Quinn:
It's frustrating. There's a writer for The Atlantic named Ed Yong, who I have just enormous respect for. And around the beginning of the pandemic, and to be clear, this is to caveat, this is not me comparing myself to Ed Yong, but we both sort of had these metaphors that we were writing about where I believe his was COVID was like a flood on a sidewalk, exposing all the cracks that were already there. And mine was like, oh, here's your pop quiz. You've made 400 years of decisions. Let's see how you do. And we failed all of them. It didn't go great. And it's everywhere from again, the medical establishment and the decisions we've made, and who's been marginalized too. Like you said, teachers where all of these parents immediately had to teach math for one hour and they were like, it's exhausting.

Quinn:
This is brutal. We should celebrate teachers and frontline workers and all this. And now we have not done those things, but I do believe that we can work on these things and that we can make progress. So I want to hear about the Native BioData Consortium. And again, I could not enjoy and appreciate more wherever you correct me, I'm wrong. So as far as I understand, many, I don't want to use the word most, many tribal groups so far have, I don't know if refused is the right word, but have abstained from using a lot out of these sort of popular genetic tests that are out there and further to add their DNA information to some of these broader public databases that have come along. Again, I'm just thinking about probably governance and profit. And I learned this word, biocommercialism from reading about your work. Tell me about the project. Tell me why and why now, and tell me why it had to be you. What does this solve for you to do this work?

Krystal Tsosie:
Sure. As everything goes with native people, everything starts with the story. So I'll give you a background a little bit about the field, which is surprising that not enough geneticists actually understand their own fields. So it starts actually in the '90s. There was a professor at Stanford University Cavalli-Sforza, and he wanted to sample as the populations around the world as possible, which sounds a lot like some of the large scale diversity projects that are ongoing today. But he had, if you look in publications, the way that he described indigenous peoples is a little insidious. It was like we have to sample indigenous populations before they vanish. So not even hearing like why indigenous people's were being disenfranchised from their lands and their cultures and the way of living.

Krystal Tsosie:
No, we don't care. We'll just ignore colonialism and not fight colonialism, except that it's going to exist and these people are going to become extinct, another word that was used, but we need their blood as quickly as possible because it's a race against time. And unsurprisingly, indigenous peoples around the world didn't like being characterized in such a way as being deemed as only valuable to science as a means to gain access to their blood as a resource for continuing research that won't benefit them.

Quinn:
It's not great.

Krystal Tsosie:
So, yeah, unsurprisingly, I think at this point in time, global indigenous populations around the world just started calling for the cessation of the human genome diversity project, HGDP. And then even the criticisms of the project continued into 2000s, and a huge concern then that's still sustained today is that what are you collecting this data for?

Krystal Tsosie:
And it was even at that time, the huge push was to make this data available openly and publicly available to increase the rate and support of innovations in science. But indigenous peoples thought, "Well, who else is going to have access to this? It's going to be companies and people with a bio commercial interest in profiting off of access to indigenous genomes." And that is called bio piracy or bio exploitation. And sure enough, what happened in 2005 is that HGDP published their paper that had their supposedly successful recruitment of global populations worldwide. And if you look at the indigenous peoples and their geography mapped, all of the indigenous peoples that they've recruited were in countries outside of the U.S., in Central and South America. And that's because countries in the U.S., or sorry, tribal nations in the U.S., they actually have federally recognized sovereignty or a right to be able to self-govern as a peoples.

Krystal Tsosie:
So you actually have like now 574 plus sovereign nations that are within the boundaries of the colonial U.S., That all have their own tribal governances and their own ways of governing ways of life for their people. And there were a number of other controversies related to like in the early 2000s of non-indigenous researchers doing questionably ethical things with indigenous peoples' data. Like for instance, in early 2000s, the Havasupai nation sued the Arizona Board of Regents and Arizona State University because an Arizona State University researcher engaged in a promise to study type two diabetes in the Havasupai nation and then turned around and started study using those samples to study other things like schizophrenia and population migration theories that were culturally incongruent with their own origin narratives. And just using words like in breeding and also just some really stigmatizing language that the tribe just didn't feel like they actually consented to.

Krystal Tsosie:
And that lawsuit actually could have bankrupted the three state universities. I think they originally asked, the original suit was something like $80 million, but then it got settled. And the result of that is tribes, the Havasupai nation basically banished to any ASU employee from setting foot in the tribal lands for a period of time. And then this is already concurrently going on with a bunch of indigenous people's concerns related to genetic data. So by and large, in the 2000s, U.S. tribal nations exercised their means of sovereignty to not engage in new research, which meant that researchers, if they want to gain access to indigenous peoples, had to go further south in the global south to tribal nations, indigenous communities that weren't protected. So for instance, if you follow how Brazil treats its indigenous peoples, it's not great. Many governments in the Central and South Americas may fundamentally refuse to acknowledge the existence of their indigenous peoples.

Krystal Tsosie:
So you can imagine that researchers coming into the communities, if they didn't have to undergo, if they had very lenient government policies and that some potentially questionable ethics could occur. And from the viewpoint of indigenous peoples, they call these projects vampire projects or helicopter projects because to them and their perspectives, scientists would come in like vampire bats or vampires in the middle of the night and take their blood and then leave or come in helicopters one day and leave with all their blood and leave again. And this is really important because after the publication of their data in 2005, the HGDP made the indigenous biomarkers publicly available on a website. And then you sort of fast forward a couple years to like 2007 to 2012, when you had the emergence of companies like direct to consumer ancestry companies like 23andMe and AncestryDNA that started utilizing their access to this public available resource for their own product development.

Krystal Tsosie:
So AncestryDNA was just sold last year to venture capitalist firm Blackstone for $4.7 billion, and then every holiday quarter since 2017 has had like $1 billion in profit. So every holiday season, when people want to gift their beloveds-

Quinn:
Put it in their stocking-

Krystal Tsosie:
Yeah, right. Figure out who you are. It's like, it's really interesting because Ancestry admits on their own vlog that their number one question is why isn't my Native American ancestry showing up? So already tying the hubris of peoples and the fundamental misunderstanding of what indigeneity means to this scientific test that supposedly reifies those false narratives indigeneity, and making a buck out of it. I'm so cynical about these things, because I think people need to understand what they're giving up when they're contributing to the DNA, to these companies. They're willfully paying a $100 to $200 to become contributors to research studies that they have absolutely no idea like what is being used, like what they're being used for.

Krystal Tsosie:
And even for the continued profit bottom line of the companies, they're just going to use your data to continue adapting their own product algorithms that you're not going to benefit from. Anyway, so there's this huge interest in collectivizing indigenous biomarkers, not just for genetic ancestry companies, but also drug companies, because now drug companies are really interested in figuring out, well, what are the next novel genetic variants associated with disease? And all of the low hanging fruit has already been picked, like common variants related to common diseases have already been heavily studied. Variants that associate with Mendelian disorders or inheritable diseases and traits, those have been studied with earlier genetic tests for like the last few decades. What really people or companies and researchers are looking for are like, what's the next variant that is going to unlock our understanding of cancer and diabetes and where are we going to find it?

Krystal Tsosie:
It's going to be in small untested populations like indigenous populations. So these are the same people that have been exploited. It is really interesting by the way, when the Native BioData Consortium started, I'm kind of skipping ahead here in my own timeline of things. But it's really interesting because we officially incorporated in 2018 as a nonprofit company and as a nonprofit research organization. And when we started and became a little bit more known nationally, internationally, we had a number of some of the largest drug companies reach out to us and ask us what kind of data we had on indigenous peoples and whether they wanted to partner with us. And of course, what we wanted to ensure was that genetic variants that are specific to indigenous communities that were going to be for which are going to form the basis for intellectual property, that those intellectual property rights are retained by the tribe, not by the companies. And another thing that we wanted to, we were asking them is like, well, what phenotypes or conditions are you interested in setting? They were only interested in studying the things that affected the massive population, not the conditions that affected the indigenous peoples.

Quinn:
Sure, that's where the money is.

Krystal Tsosie:
Exactly. So this, you should tell you, if our goal of collectivizing indigenous DNA is to benefit the most, then we are still going to fundamentally ignore the individuals that also still suffer that are contributing the DNA to begin with. This is why I questioned the phrase, democratizing data or democratizing science, which democratization of science is like this popular buzz phrase that's been going on recently and people don't understand or critically question what it means. So first of all, democracy is not really something that we should be aiming for, especially when we consider the garbage fire of 2020 in the recent election.

Quinn:
Yeah, to be clear, it's not always great, this democracy. I mean, I don't remember what the Winston Churchill, to butcher it, it's essentially like it's the best of all the worst options, but also it's not going great. We could use a different word or idea.

Krystal Tsosie:
Yeah. Whoever equated democracy with something that means something to be fundamentally good hasn't paid attention to history. And also there are different forms of democracy, like the Athenian democracy and also the [inaudible 00:38:06] Confederacy, like indigenous peoples had their own form of democracy. But democracy is the benefit to the majority. And in this case, it's how can we extract the data from a very small portion of peoples that have suffered the worst in terms of colonial factors and let's continue extracting and exploiting these individuals as long as we're benefiting the most, but this is supposed to be considered a good thing. It's horrible. I think people need to stop equating diversity inclusivity with equity because it's not the same thing. We have all of these DEI or EDI efforts in terms of trying to ensure that we have more inclusion and participation of peoples of color in all levels of academia and different fields. But that means nothing if you're not also providing equity to that representation.

Quinn:
Hey, it's Quinn. I'll make this quick. Sifting through the news is a slog. Finding the signal in the noise, it's damn near impossible. And if you do, what can you even do about it? I'll tell you what you can do. Literally, every week, I'll tell you the most impactful thing you can do. In just 10 minutes a week, you can get smarter, feel better and make radical change for yourself, your family, your investments, your company, and for the world. Join tens of thousands of other leaders and subscribe to our free weekly newsletter at newsletter.importantnotimportant.com. Get the most vital science news, exclusive analysis and action steps for free. That's newsletter.importantnotimportant.com or just click the link right in your show notes. Back to the show.

Quinn:
Well, and that's the point about who's in the room. It's not just like we have failed to do the input side, which is inclusivity is not just like hiring people or statistics in like your PR of your company. It is literally who's in the room, who gets to participate what is the hierarchy there. And not just what story is told, not just who gets to tell the story, but who gets to decide who gets to tell the story, but then you also, like you're saying the equity side, you have to consider the output, which is like okay, that's great. Imagine we had a pandemic that affected everybody on the planet, and the end was everyone. You still have to consider and this is what we're seeing. And this isn't specifically tied to any particular indigenous population or any population.

Quinn:
But this idea now we've got these two main drug companies that develop the mRNA vaccines, but develop them in participation with at least one federal government that threw billions of dollars and contributed their own scientific expertise. And now you've got, yes, it did help the most and everyone, but who is profiting from it is exclusively exactly who you'd expect it to be. And now they're refusing to both share those profits, but also the patents that are driving those profits. And so once again, the low income populations of the planet, the most marginalized 4 billion people are not receiving the output, which is where is the benefit and where is the equity in that? If those people aren't protected, if only certain capitalistic corporations are benefiting from it, then we're doing it all over again. And it seems like that's the same thing, if I'm understanding it correctly with this idea of no, we're not going to give you the DNA because you haven't proven that there's an equity for us on the other side of this.

Krystal Tsosie:
Exactly. We cannot equate your participation with equity of benefiting. And this is what we're really calling to push. If you're going to create technologies based off of our people's DNA, then we need to talk about a more direct path in which we benefit. What has happened is that scientists will enter indigenous communities and they'll over promise something that they can't deliver. They over promise on the delivery of genomic and precision medicine and health. It is not unlike, let's see, so a New York Times reporter went back to the Christiana, which is a Central Amazonian community in 2007. And he basically asked them what was it that scientists promised you in exchange for access to your genomic data? And the people stated, "Well, we were promised innovations and access to medicines that was going to treat the things that were killing us in our communities."

Krystal Tsosie:
And the reporter was like, "Well, did those medicines ever arrive?" No, but the reporter did state though that their access to the genomic information that was being sold by Coriell cell repositories for like $75 or $85 a vial, which is not dissimilar to the profit by which 23andMe, Ancestry and all these other companies have had based off of their people's DNA, because they're one of the HGDP indigenous populations. So yeah, one of the reasons why U.S. indigenous peoples have at least voiced to us at the beginning of the Native BioData Consortium, why they don't participate in federal funded research is that in the U.S., data that is collected from federal funded research has been to collect it into a repository, again with the underlying assumption that it will advance health and science and the rate of innovation.

Krystal Tsosie:
But what this does is it takes indigenous people's DNA if they participate, and it makes those data decisions related to access outside of tribal hands. Tribal leaders basically say, "We don't want to do that. We have a sovereign right to be able to have a say in what happens to the data that is collected from us. And we have a say in terms of, even to not have our DNA being involved in studies that have absolutely no interest for us, like for instance, ancient DNA studies, which are not really of interest to indigenous people." So they were just fundamentally not engaging in research. So what we thought was of a good alternative solution was to create a tribally managed biological data repository. So if tribes were interested in working, in partnering with researchers, then they would entrust that data through a tribally managed entity, and then researchers would have to come to us or that tribally managed entity in order to gain access to the research, which means that they have to undergo tribal research governances and processes for approval in order to gain access to that DNA.

Krystal Tsosie:
So at least then the tribes actually have a say in what types of data is being accessed, and also it's just in terms of also say like what people they actually trust. And we've been able to do this because at this point in time, we have the largest cohort of scientists who are indigenous, who come from communities. And we have been able to leverage that new talent and expertise, and those individuals primarily comprise our directors, our board advisors, and also the researchers that we work with. So we really, really rely on working and building these connections with researchers and communities that understand this goal.

Krystal Tsosie:
And we are really grateful that we've been so successful in the past couple years and how I get caught into it was more the fact that I just happened to be in the right place in the right time, in terms of foreseeing the needs to have indigenous scientists who also had this bioethical implications of data. And so I do wear a lot of hats and I use every single one of them in my work. And I do have more work than I have hours of the day, but I love it. It is ultimately fulfilling, but if you asked me five or so years ago, if I was going to be entering the space of becoming a scientist/entrepreneur, I would've thought you were pulling my tail or something.

Quinn:
And please feel free of course to say not interested in sharing or we can't share or whatever might be, or even as far as just speak in generalities. But now that the consortium exists and there is cooperation and there is governance and there are both philosophies and methodologies to how I imagine you are encouraging participation, garnering trust and thinking about if, and if so, how to use the data that has been collected with permission with that trust. Are there projects that are actively being worked on from that data? And how do you go about, I guess, identifying what both the priorities and also what is going to be most beneficial in every way to the tribes that gave, and the people within those tribes that participated in giving their data?

Krystal Tsosie:
Sure. That's a huge question. So just collecting and housing data, yeah. No, collecting and housing data is one challenge, right? But then what you do with that data is an entirely different question. So a biobank at its very minimum can just be a freezer holding samples. But if you want to do something useful for it, you have to have a lot of other ethical and legal frameworks are in place. And that's actually what we spent the last two years doing is working with tribal lawyers and tribal leaders and a non-tribal firm that is related to intellectual property, just so that we can build up legal protections and standard legal language in terms of ensuring that data sharing policies are actually equitable for tribes. Because what we noticed as we were starting to talk about partnerships, particularly with universities, is that universities obviously, they have institutional review boards that are supposed to ethically govern how they work with human participants in research.

Krystal Tsosie:
But those entities are very centered on protecting the university's right to access and their rights to claim intellectual property. So for instance, one of the major universities that we work with, they have a policy in which they will refuse to seed review to any other institutional review board, including other tribes' research, regulatory processes. So they're already stating it's our way that approves it or no nothing, or you can't basically use us as a partner in your research grant. And then there's something called the [inaudible 00:49:26] Act, in which basically it protects universities to claim intellectual property on technological innovations. So universities have this legal protection for IP, but not tribes. If a tribe doesn't have their own legal laws in place, then they're just left unprotected. So we're really starting from scratch in terms of ensuring that tribes retain ownership of intellectual property from their own people's DNA.

Krystal Tsosie:
And that's actually where we have spent the last one to two years is our own legal education. And then we've also been able, because of COVID, we're also extending into this public health sphere. We are in wanting to ensure that samples collected from community members are related to COVID, that those samples are held locally and tested locally. What used to happen, what still happens unfortunately, is that well, when the pandemic started, many tribes, most tribes didn't have their own local testing facilities. And they would have to either send out their samples to a public health resource, or even to companies that were creating these COVID detection assays. And that actually put genetic data in proprietary hands, that they had no sovereignty over and no protections over and that's their genetic data. So now we don't know how many companies have had access to genomic information from indigenous peoples.

Krystal Tsosie:
And that was just part of the pandemic. So what we created was a tribal public health surveillance program in which we are ensuring that that data is housed locally, tested locally, and also ensures that we don't have this huge lag period in which somebody has to wait two weeks for the test results to come back. And meanwhile, maybe unfortunately, infecting other people. Now you can turn around those results a lot quicker because the sample is just down the street as opposed to several states away. And then you can perhaps mitigate the spread and transmission of the virus. So that's one thing that we're working on. We're also working with a number of tribal communities that want to set their own biobanks. It doesn't have to be human samples. It could be things like creating their own seed biobanks. There's actually a lot of interest in that. Like for instance, museums have had archives of indigenous samples of plants and because big agriculture has created these huge monolithic cultures, monocultures, there's a huge threat to genetic diversity. So for instance, the banana plant that we have is actually under risk of perhaps being totally obliterated, because I think it's the cavendish species of banana plant is really open to susceptibility.

Quinn:
I remember reading something about that, which is basically like, I don't think people realize bananas are going bye bye.

Krystal Tsosie:
Yeah. And so now, agriculture's looking to these museum archived samples of indigenous plants to sort of reintegrate back into their species, but that's a form of exploitation of indigenous knowledges. There's a battle, so there's this huge interest in indigenous-

Quinn:
Same thing as California doing, now going, "Oh, wait, it turns out we should have been listening to indigenous people and how they manage forests for thousands of years because-"

Krystal Tsosie:
Yeah, yeah, yeah. Indigenous science is always considered like this fringe thing or this alternative hypothesis, but when it services supposedly Western science, then we're deemed useful, which is another form of destruction and exploitation of our knowledges. So it's all integrated, like for us as indigenous peoples, we don't have these weird arbitrary definitions of what constitute human versus nonhuman. We steward all types of data, which is awesome. And it also speaks to the fact that as a geneticist, I am so annoyed with the prioritization and preemptation of genomic data as being like the means of studying health disparities, because only up to 50% of diseases are heritable. A lot of it has to do with non-genetic factors that relate to disease like structural barriers related to disease, environmental factors, yeah, yeah, yeah. And we're not studying these things.

Quinn:
No, of course not. There are systems that we have designed that are so inescapable, like even the idea of them as inescapable for so many marginalized peoples in the U.S. and elsewhere that to not consider them is just gross negligence. You can't just look at the DNA. I mean, I think of, again, this is a totally different version, but the research, oh gosh, I'm totally forgetting the gentleman's name, who does the blue zones research. Have you heard about this? He's worked with National Geographic forever and basically has identified the places around the world and the unifying sort of, I don't remember what it is, seven or eight sort of building blocks where the people live the longest, but also the healthiest essentially and how they can be in totally different places. But these are the things, and one of his initial identifications was the things like you were just saying, but almost the inverse. What makes these folks live the longest healthiest is only something like 20% genetic and 80% of it is all of these other factors that in the west, we are both happy to ignore or invert and just totally ruin, from junk food to sitting to isolating people, et cetera, et cetera.

Krystal Tsosie:
Yeah, no, that's actually accurate. I go into conferences all the time. Like for instance, I just presented at a Society for Clinical Pharmacology conference and I basically told them we are over promising on things that we can't deliver. We are over prioritizing genetic information and their contributions toward disease. And really, we should be thinking of structural factors. The statistics I cited to them was like in 2018, so right before the pandemic, the Indian health services spent 2.4 times less per patient than the national per capita spending for healthcare. So I'm all like, yeah, when COVID hit, the communities that were hit the hardest were black communities and also tribal communities and tribal communities, just to seek preventative healthcare, some of them have to drive three, four hours in one way, just be able to see a clinic. So I'm like maybe we should be thinking more along the structural access to disparities in health than just claiming everything to be genetic and that is my critique as a geneticist.

Quinn:
Sure. But I mean I'm so inclined, and part of this is having young children who do this to me all day, but it's this methodology of just going, why, why, why, why, why until you get to the bottom of things where you think wider or more nuanced and layered context, but like you're saying, over promising and underdelivering, I mean we've been talking about, and it's been on the cover of personalized medicine for how long now, and maybe it's time to take a step back and go, maybe the reason it's not working isn't because of these hyperexpensive of personalized medicines and it's these enormous structural barriers and food deserts and all of these different things and the air pollution in the water that just nullify anything you're going to do with medicine, if it works in the first place.

Krystal Tsosie:
Personalized medicine is such a misnomer anyway. We're writing a paper on just this. We just had a conversation on this before this. So personalized medicine makes sense from a clinician's point of view and that clinicians, their point of care is each individual. So they're considered with one individual's personal care and their data, fine. To everyone else in the world though, that accesses health data like it's a misnomer. So personalized medicine became precision medicine and precision medicine, especially related to the genomic medicine is basically defining biological groups by at risk categories, like who is at risk for this disease versus who's at risk for this other disease. And then when those strata, when those groups are defined by racial and ethnic categories, and then you get into racial medicine, which is opening up a whole floodgate of issues because one indigenous person's not the same genetically as another indigenous person, one white person's not the same as another white person. A Latino person could be genetically diverse from another Latino person. These are just like really broad social categories that are dangerous when you over biologicize them.

Quinn:
Well, I mean, our conversation with Lauren Underwood, Rep. Underwood about the black people who identify as women, as birthing persons, I'm trying to use the correct language here, are nationally two to four times more likely to die in the year after childbirth, but in her home state, it's six times as likely. And that's not a biological thing. That is a societal construct that we have built and is probably working to plan. It's not something that's broken. That's designed this way. And by trying to, like you're saying, trying to get into the racial medicine side is not that way. Otherwise, when Serena Williams and Beyonce published their stories about their miscarriages and Serena Williams almost bleeding out in her delivery room after she had her baby, if there was a biological answer, a medicinal answer, she could have afforded it and it would have been available, but that's not what that was. It was doctors who don't listen to her and a whole system that's failed her for generations. And we just keep repeating that.

Krystal Tsosie:
Yeah, exactly. I'm not going to say that genetic ancestry is not useful for some things. It's just not useful for everything. And especially building like scientifically reifying these social categories of basically human diseases without also considering the social underlying causes, it's just irresponsible and is illogical. We really just should be thinking about these societal factors related to disease. So another one, I'll give you another one, like Native Americans, a common negative stereotype about us is that we are supposedly genetically predisposed to alcoholism. So the NIH has funded, has published over 200 papers over the last several decades about looking at genetic variants associated with alcoholism in Native American communities. So they're searching already with this, circling towards this preempted story that they want to create about us. But turns out if you look epidemiologically just on data, most in tribal nations in the U.S. actually don't have higher rates of alcoholism compared to other populations. In fact, in some cases, their rates of alcoholism is even less, but the stereotype continues to be perpetuated against us and it's so demoralizing and demeaning.

Quinn:
And it's so difficult to escape. Again, just like the practical systems themselves are difficult to escape. I mean, a huge sort of canary in the coal mine for me and how I try to understand and think about things and listen and process was the incredible book, The New Jim Crow. You just go, "Oh, this is how this is designed.", and any of these biological stuff again. And not that it's not important. And not that it can't be an inclination to other things, but it's almost the last piece of the puzzle, because if you don't undo these other things, it doesn't matter. It's like, when you say like, "Oh, black kids are twice as likely to have asthma." It's like, "Okay, well, why?" It's because they live next to coal plants, and that's because we made housing unaffordable and we redlined everywhere. And you can just keep doing this. It's not that difficult, but apparently it is. And so it's understandable when 574 tribes say, "We're not giving you our DNA, man. There's no equity here. There's no benefit."

Krystal Tsosie:
It's really important that everybody has knowledge of these issues and the underlying ethics behind all this because it effectively, well ultimately affects everybody. So these issues related to data privacy and consent affect not just indigenous peoples, not just peoples of color, but all people. So there have been a number of studies that have shown that for people that don't understand all the intricacies of research consent forms, that there can be a confusion between research and also clinical care, especially like for instance, if a patient is going to go into a university hospital or a clinical setting, and they're asked to be recruited into a medical study, sometimes there's a confusion about there's actually a huge amount of confusion. Sometimes I bet that their clinical care is tied to their participation in research. That is a huge problem. That's also considered clinical genetic tests. When your provider recommends that somebody takes a clinical genetic test, what they're doing is they're providing access to a third party, the makers of that clinical test to provide access to one's individual genome or everyone that they're biologically related to. But that's a commercial entity. And it's really fascinating because there are really very few clinical genetic testing companies have opt out policies, data sharing opt out policies.

Quinn:
I'm just thinking of, and without sharing too much, I'm thinking, my wife and I had an impossible time making our children. We had to do a lot of IVF. And there was a phenomenal amount of testing involved and we never actually discovered why we had such a hard time. We were very lucky to eventually be able to make some babies. But I can't imagine the forms that I eventually was just like, yeah, fine, whatever gets us to the answer. I cannot even imagine what I've signed away at this point.

Krystal Tsosie:
Yeah. I had that same issue and I know how valuable companies find supposedly Native American DNA. I was at the American Society of Human Genetics meeting a few years ago, which is like the largest worldwide conference of geneticists in the world. If it's not the largest, it's like the second largest. And I had a question related to 23andMe and university partnered research. So I went downstairs to their booth. And I got ahold of the technical advisor and he basically looked at me and was like, "Oh, you're Native American? Can I give you a free test? And to everyone, all your friends and family." I'm like, oh my God.

Quinn:
Do it live. They're not even being subtle.

Krystal Tsosie:
We need to reduce the supposed scientific colleague to the color of my skin and utility for the company and exactly, exactly at the fricking genetics conference. Yeah, and this happens all the time where 23andMe and Ancestry and other genetics studies will just set up booths at tribal fairs. And in some cases, they'll prey on like missing and murdered indigenous women, like, "Hey, you want to find your missing relative? Provide us your DNA. And we'll deposit into a database, a data set. And so that it could help you find a solution better."

Quinn:
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Quinn:
I could have this conversation all day, but your time is just so valuable to so many other people. I want to just talk about one thing that's a little less, what do they call it these days? Hard science, before we get into really specific action steps that our community can take, whether they identify and are part of a tribe anywhere in the world, or they're someone who looks a little bit more like me, and the answer might be like, leave us alone or do this, but we're game for whatever you say. But before that, because we are also in this moment of there are some battles going on, both I think internally within a lot of people, but also obviously in the courts about governance and identity over our own persons, over our own bodies.

Quinn:
Because like you were saying, who we are isn't just our genetic makeup. It is our culture. It is, but forever we framed it ridiculously. So simplistically, it's nature versus nurture, but it ignores all of the different inputs and variance of those and how they combine, and it ignores this idea of like, it's how we feel in our bodies. It's how we live. It's who we live with. It's how we were raised, the languages we may have spoken, we were growing up or speak now. It's who we choose to surround ourselves with. So I know you've written a little bit about this idea of uncoupling DNA and identity, and what they mean to us and how we are judged by others and accepted. What does that mean for you now in this crazy period where the news seems to change every day, and you've got fights over can trans kids go in the bathroom or not? And how does that apply to your work? And I know this is kind of a different pivot, but I felt bereft not engaging in this because it does obviously matter to so many people.

Krystal Tsosie:
Yeah. So this is-

Quinn:
I know, I think it could be an entirely different discussion. We can do that, and I'm happy to do that. But I know it really does matter.

Krystal Tsosie:
I mean, for one thing, we're not just one thing. We belong to multiple communities and we should be embracing those identities to the extent that it embraces us back. A huge part of people wanting to claim genetically creating indigenous claims is a sense of wanting to belong somewhere. That's kind of what we're talking about is this human want to connect to something somewhere, and this is possibly why you get a lot of fetishization of indigenous cultures from people of European descents, because there have been papers that have substantiated this. It's not just my own anecdotal experience, although that also adds to it like Europeans, they don't feel, they feel like, they don't feel like a concrete tie to their ancestors. It's too diffused in terms of the number of heritages from which they came.

Krystal Tsosie:
So they feel like mutts in a way, and that's their wording, not mine. And I don't know, there's something intriguing about being tied to the exotic or something that's really tangible geographically like indigenous cultures. And so there's a lot of instances in areas in the U.S. of people wanting to falsely claim indigeneity, like for instance in the Southeast, which has a huge complex racial history related to all the different identities. So just using that as a microcosm for people just wanting to belong somewhere, many people look to genetics as an easy fix. And I say that as an easy fix, because I used to volunteer for the Native American Indian Association of Tennessee. It's a nonprofit there. And people would call in daily say, "Oh, I took this genetic test and I'm 10% native. Can I get a tribal enrollment card so that I can get a free house?"

Krystal Tsosie:
So there's some insidious wants to claim indigeneity because there's this perceived gain there. But then also there are just individuals that don't want to do the work of genetic genealogy, because some people will ask like, "Well, what is the legitimate way to claim indigeneity?" It's like, well, family history, family records, going through census roles and oh, it's too much work, which is also horrible for me to hear as a native person like, "Oh, great. You want to be one of us so badly, but it's so much work for you. If you actually were a Native American, you'd find it really difficult to exist as a native person. I'll just tell you that considering how much backlash we get just merely existing. So maybe you should rethink that."

Krystal Tsosie:
But going back to the larger question of belonging, I think sometimes people look at genetics as too easy of a solution to create this sense of belongingness. But really they should just be thinking about the communities that they already exist in and really thinking about embracing those because there's numerous layers to our identities. And when you think of it that way, then over biologicizing it removes the beauty of the diversity of all those experiences. So I don't know, I'm just hoping that people really think about creating community and connections in places that are legitimate and more proximal to them rather than trying to falsely create these claims.

Quinn:
I love that. Thank you for that. That's a very thoughtful answer to a ridiculously complex question. I thought of something and this is a little off beat. One second, there's a book/cookbook that's available. I think it's a couple years old now called The Cooking Gene. And it's by a gentleman named Michael Twitty, who is an African American gentleman, but also identifies like you were saying, no one's a monolith, and no one wants to be identified that way. And he talks about basically, how did food come from all these different countries and cultures and peoples in Africa and make its way to the American south, but also what does it mean for him and his history in all his different places, but also the ways he identifies as an African American man, as a gay gentleman, as a Jewish man.

Quinn:
And it's one of the most beautiful books I've ever read and I recommend it to anyone. And it just talks about delicious food the entire time. So there's just that as well. But I thought you would appreciate that because the biological biomarkers are there, but his point is like yeah, but what else does it mean? And what else makes me mean? And what else makes food important to people and how we nourish people through stories and things like that. So anyways, I can't recommend that one more. All right.

Krystal Tsosie:
There's a point to be made here in that even these categories, these social categories of a peoples is arbitrary, because it's based off of definition based on one point in time, a cross sectional point of history. And peoples move all the time. Just to give you, for instance, the Navajo nation, as it's defined now, is kind of a recent colonial definition based off of when we were recognized by the federal government. And that's just been perpetuated since then, because before then, as a peoples, we recognized that we were a construct of many peoples. So we used to have over 400 clans, unfortunately due to genocidal factors, it's more like a 100 to 200, but we have, we acknowledge like for instance, one of my four clans is Mexican peoples clans, there's Zuni clan. There is a Yu clan, and these are part of the umbrella of what constitutes Navajo peoples, but it recognizes that we came from other places and we have incorporated all these different identities of other peoples in our spaces. And it's the same thing for food to use your analogies. What constitutes Southern culture is just an amalgam of a much different identities in tons of spaces. And it's just that we happen from this point or an arbitrary point in time to just over categorize it.

Quinn:
I love that. Thanks. Okay, listen, we're going to get you out of here in a second, but one of our, sort of our bread and butter is these action steps as we put them. So I'm going to sort of leave this to you. How can our community again, which is a widely varied community of professionals and students, and all these different folks from so many different places comprises so many different things, but they're unified in the sense that they give a shit and they like to take action and support good things and good people. And that is definitively you Krystal. So how can they best support your efforts and your work and the projects you are working on? Give us, I mean, I'm talking like, what is the URL? What are we doing here?

Krystal Tsosie:
One, you can donate money to the Native BioData Consortium. We're a nonprofit. We would be happy to receive your tax deductible donation, but also just learn and read things that you are signing. These issues related to like genomic privacy bleed into data privacy, and algorithms lead into like data, social and informational justice. How many people read the EULA, the end user license agreement for Facebook and similarly, you should be paying attention to the informed consent forms that you're signing when you're at the doctor's office and somebody asks you to sign on for research and also understand that your DNA is not just your own right to privacy, but also everyone you're biologically related to. So we really need to think in terms of not just steward data ownership, but also data stewardship, and also just understanding that we are connected to other peoples besides our own spheres.

Quinn:
I love that. Thank you. I couldn't put together a more thoughtful sentence if I tried. That is so helpful. What is literally the place that people would go to donate to the consortium?

Krystal Tsosie:
Oh, go to www.nativebio.org, and then you'll find a link at the bottom.

Quinn:
Awesome. Well, we'll put that in the show notes too. Last question for you before I get you out of here, Krystal. What is a book, to preface, we have a whole list on bookshop, which supports independent bookstores or guest recommendations. That's a specific question. What is a book you've read this year that's opened your mind to a topic or an idea or a question you hadn't considered before, or that has actually changed your thinking in some way.

Krystal Tsosie:
So first, I had a book in mind before you had the caveat of this year. First book, I mean-

Quinn:
I don't care. You say all the books you want.

Krystal Tsosie:
Native American DNA by Kim TallBear. If you're interested in genetics and indigeneity, that's the book to go to. This year, I picked up Data Feminism by Catherine D'Ignazio and Lauren Klein. I love this. We've heard of big dick energy, right?

Quinn:
Oh, 1,000%, yeah.

Krystal Tsosie:
And they draw characterizations between the masculinity for collectivizing this data as like just this big push, a big data era, big dick energy. I don't know, just calling into the humanity and justice of relating to these data science decisions. And I love it.

Quinn:
I love it. That is awesome. I'm definitely going to dig into that. We'll put them in the show notes and we'll put them on our list so everyone can find them. Last one, where can our listeners follow you and your work online, Krystal?

Krystal Tsosie:
Most of my, I'm a private person, but I do have a Twitter profile. So if you just do Twitter @kstsosie, KS Tsosie, you'll find me.

Quinn:
So it's not sushi, are you sure?

Krystal Tsosie:
Not, you can pronounce it sushi all you want because I won't get to hear it.

Quinn:
Perfect. Krystal, I know that your time is immensely valuable and you have given so much to us here. I do hope and I believe we've done 129 of these that our community can pay back the time you've given us today through, like you said, learning and listening, a greater understanding of the landscape, but also hopefully this proclivity that we tend to show towards supporting good people's work. So let's do that folks. So thank you so much for your time, and I sincerely appreciate it.

Quinn:
Thanks to our incredible guest today. And thanks to all of you for tuning in. We hope this episode has made your commute or awesome workout or dishwashing or fucking dog walking late at night, that much more pleasant. As a reminder, please subscribe to our free email newsletter at importantnotimportant.com. It is all the news most vital to our survival as a species.

Brian:
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Quinn:
Thanks to the very awesome Tim Blane for our jam and music, to all of you for listening. And finally, most importantly, to our moms for making us. Have a great day.

Brian:
Thanks guys.