Krystal Tsosie: Exploring Native American genetics
Krystal Tsosie, Image courtesy of Krystal Tsosie
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Sally: As we heard from Jennifer Raff, humans began to populate the Americas around 15-25,000 years ago and are the ancestors of modern day Native Americans. One strand of evidence that anthropologists have used to uncover this story is population genetics on these Native American descendants.
Sadly, as is often the case in the history of genetics, racism has left its mark on the field and its effects are still being felt in modern genetics research. Indigenous people who have been marginalised, oppressed and exploited by white European colonists for the past few centuries have seen a surge of interest from multinational pharmaceutical companies who want to use their genetic data. Understandably, many see genetic research as just yet another area where non-Native parties want to profit from Native communities with little thought for how their research will benefit those communities.
To learn more about how Indigenous people are involved in genetics research, I sat down with Krystal Tsosie, a Native American geneticist and ethicist at Vanderbilt University. She’s also a cofounder of the Native BioData Consortium, a Native American run genetic biobank promoting research that benefits Indigenous peoples.
To begin with, I asked Krystal to tell me a bit more about how Native American genomes have been used in the past, and why so many multinational corporations are so interested in Indigenous genetics…
Krystal: There's this open push in what we call the 'big data era' to just collect more and more genomic data across many diverse populations. It sounds good on paper, but we also have to realise that there have been earlier large scale diversity projects, like the Human Genome Diversity Project and 1000 Genomes, and also National Geographic had the Genographic Project. Their entire missions were to collect indigenous DNA and biomarkers - and this is language that the Human Genome Diversity Project used - before Indigenous peoples vanished. So not really caring about the colonial factors relating to the disempowerment and disenfranchisement and rights of our peoples, but more...
Sally: It's like, "We care more about protecting your genome than we do about protecting the people themselves and their culture"
Krystal: Yes, exactly. So this is a perfect example of 'science for whose interest' and whose benefit is it for the Indigenous peoples that are providing the DNA or is it for this global depiction of a global story that really benefits whom? Certainly not us.
Krystal: In terms of the health aspects, there's also this huge push for collecting genomes across diverse populations. And if we're not careful, it can evoke some of those same questions. Who are we collecting this data for and for whose benefit? And there's a lot of private interest in collecting genomes from diverse populations. And from my perspective, as an Indigenous person who has grown up in less than affluent conditions, my understanding is that human geneticists in particular tend to over-prioritise the contribution of DNA and genomic information towards health disparities. And I would like to see more attention given to structural factors related to health.
Krystal: So that's where my interest is in terms of starting and help co-founding an Indigenous biological data repository was not to just ensure that data collected from Indigenous peoples was going to benefit Indigenous peoples, but also that we're not just prioritising biological factors related to health, but also looking at colonial factors, cultural factors, associate economic factors contributing to health. These types of research questions are best interrogated by Indigenous peoples and scientists who came from these settings and these environments, because what I found working with non-Indigenous scientists who don't have this type of perspective, is they come in with their own biases and their own interests and their own research agendas. And it doesn't always service the Indigenous peoples.
Sally: It seems like everybody wants a piece of Native American DNA. It seems like it's the big, new thing that all of the big pharma companies and big genetics companies are like, "Oh, if only we could have some Native American genomes, we could make either such a lot of money or such a great deal of benefit to the world." What is it about Native American DNA that they think is so special that everybody wants?
Krystal: We are considered an "untapped, undiscovered resource". So here you have language of discovery tied with the disenfranchisement and usurpment of our information.
Krystal: So if you think about it, in terms of our knowledge of genetics and genetic factors contributing to disease, the lowest hanging fruit has already been picked. We have a wealth of knowledge of Mendelian factors contributing to disease and also now with over a decade of genome wide association studies technologies, we have some knowledge of common variants that relate to common diseases. The next big blockbuster drugs are going to be in smaller, untested populations like Indigenous peoples and peoples with rare variants.
Krystal: And there's also this notion of biological purity that unfortunately underpins some of these searches. I'm a US Indigenous researcher so a lot of my research has focused on the US context. So if we look again in the US construct, there's a lot of genetic admixture or a lot of movement among populations, and particularly in the south-eastern and southern portion of the US, and a lot of more urban natives who have been able to intermix with other outside, so-to-speak ,groups. Those populations are not really of interest to scientists.
Krystal: But they're interested in our peoples in the southwest, like mine, my community, the Navajo nation, because we've been able to retain - just due to our geography and our histories - large tracks of our own homelands. And we've been able to retain our culture. So there's a lot of interest in us studying south-western US Indigenous peoples because we're "biologically pure".
Sally: That sounds so horrible. I worked on fruit flies and that sounds like the sort of thing I would say about a fruit fly line.
Krystal: Exactly. It gets into really dangerous notions of conflating genetics and race, and really gets into some of these dangerous connotations and connections. And there's a lot of interest again, with ancestral DNA because again, unfortunately, there's just these eugenic notions of genetic purity...
Sally: It's one of those things in genetics that we just can't get away from as a field. It's such a stubborn idea.
Krystal: Yes, exactly.
Sally: One thing I wanted to ask you about was just to kind of break down this link between rare genomes, a smaller population size and that being valuable. How is that link there? So sure, we know all about white European genomes. We kind of understand if certain genes are related to certain diseases. Hypothetically, what is it that these companies are thinking? Is it, "Oh, maybe these populations will have genetic traits that make them less likely to get some of these diseases?" What is it that they're looking for?
Krystal: To be honest, it's strange? Because a lot of drug companies, their bottom line is profit. And what they're looking for is not necessarily genetic variants that are found in Indigenous communities that are associated with diseases that affect Indigenous peoples because that wouldn't be really a good profit model for them, because why would they want to devote resources and money towards studying a condition that only affects Indigenous peoples who constitute between roughly - according to whatever estimate you use - 2-4% of the population?
Sally: And presumably they're not the richest 2-4% of the population either.
Krystal: Ah, yes, unfortunately, that's the other thing that goes unsaid. But when I had meetings with some pharmaceutical representatives, they're interested in looking at Indigenous peoples to find undiscovered, untapped variants in Indigenous peoples for conditions that also affect non-Indigenous peoples.
Krystal: For instance, there has been a large documented history of utilising Indigenous people's DNA, not to just study Type 2 diabetes, but also Type 1 diabetes, which doesn't even affect Indigenous peoples by and large. It largely affects people of European descent.
Sally: I was going to say that sounds great; everyone gets it. I didn't know that it wasn't an issue so much in those populations.
Krystal: Not so much, no. But there's still interest in looking at Indigenous genomes for just common conditions that affect not only Indigenous peoples, but also the dominant population as well. If we really want to tackle health disparities, we really should be studying conditions that predominantly affect Indigenous peoples. But that's not how these profit models are generated. It seems like there's interest in utilising Indigenous variants not just to study conditions that affect Native peoples, but also largely would be of interest to non-Indigenous peoples and that's extractive.
Sally: They're very focused on collecting a diversity of genomes, but then only applying it to a very non diverse group of diseases and group of people that it's benefitting.
Krystal: That is a very cynical view. And some of my conversations with drug pharma representatives have informed that decision. I mean, that's not all of research. A lot of researchers do have interest in actually studying health disparities in terms of conditions that disproportionately affect our peoples.
Sally: And history gives you reason to be concerned.
Krystal: Exactly. Ultimately, beyond all of this, really what we should be pushing for is intellectual property owned by the communities that provide the data.
Sally: Yeah, and that's part of what Native BioData, this consortium, wants to do. It seems to be both storing the data and promoting the research on it. So firstly, what does that look like? Is it a building? Is it a group of people?
Krystal: So we do have facilities that are located on tribal lands, and that is really important because that builds trust because local tribal communities can actually see a physical structure and know where the data is being held and it's within tribal jurisdictions.
Krystal: The consortium part of it is the fact that we do partner with other Indigenous communities who are interested in also starting their own biological and data repositories, or would like to partner with our facilities and also researchers. It's really more about building a trust network of allies that we know will be pursuing research in a way that's equitable and beneficial to tribes.
Sally: And what is the interesting research that's going on at the moment that you're like, "Yes, this is the kind of research we need more of"
Krystal: Right now, we have started a tribal public health surveillance programme so that we can do local COVID testing. We also have a long-term study that has been ongoing within the communities that we're continuing to expand upon. And we're also starting to branch off into some forensic spaces. So providing an alternative to some missing and murdered Indigenous peoples in terms of aiding in their return to communities. I think that's about all I can publicly disclose at the moment.
Sally: I mean, it just goes to show what a breadth of work that your consortium is focusing on, and that it's not just the pure genetic side of things either. It's more about the overall health rather than just genetics.
Krystal: Exactly. We also do have a huge environmental component. So Indigenous peoples are stewards of over 70% of the world's biodiversity. And there's a lot of interest from agronomists for reintroducing genetic diversity into monocultures and utilising Indigenous knowledge and indigenous curated species for re-introducing that genetic diversity as well. So there's a lot of environmental stewardship and protection and those questions as well.
Sally: It's such an interesting aspect that I completely hadn't thought of, which is not just the human diversity that you've got, but the diversity of crops and animals.
Krystal: And then it becomes a little bit more intricately linked because there's a lot of interest in microbiome diversity as well. There was an article that came out recently about 'the disappearing microbiome' and how certain scientists are looking to Indigenous populations as being "pre-industrial" or "pre-modern". So already having this antiquated notion of Indigenous peoples as not being modern or even...
Sally: You've never had a loaf of white bread and a diet Coke ever in your life.
Krystal: Again, Indigenous peoples are considered this fountain of microbiome diversity. Just as there was interest in using Indigenous peoples as like sources of ancestral, so to speak, microbiome data, now you also see this in parallel to looking at our ancestors' genomic information as perhaps unlocking some sort of information that relates to chronic and common illnesses in today's contemporary population. So a lot of ancient DNA research is actually looking to our ancestors for insight into human health conditions that affect peoples today.
Sally: That blows my mind. I mean, it still blows my mind that we can get enough DNA from such old bones that we can construct a genome and just be like, "Yeah, this person was here. They and their family moved here." But then to be looking at genetic data on such a fine level you can look at diseases.
Krystal: There's this distinction that's arbitrary about what constitutes human versus non-human subjects' DNA. And it's interesting that our ancestors are considered non-human subjects. They are literally human, yet they are...
Sally: Wait, when you say they're considered non-human, who consider them that?
Krystal: Institutional review boards consider only living human participants as being able to consent to research. And those are the research types of studies that have to undergo ethical review. Research on non living persons is considered non-human subject research, and therefore doesn't have to undergo ethical review.
Krystal: So this is actually considered a blind spot in terms of human palaeogenomic research. This is a way of looking at human genomic information without having to go through consent processes. There's a lot of push for Indigenous researchers to seek consent from descendant communities, but people move and also the colonial and geographic boundaries of what constitutes non-Indigenous land versus Indigenous land is recent compared to the lifespan of our ancestors.
Krystal: It's just arbitrary. That is the word that I keep circling around.
Krystal: And these are larger ethical considerations that are still relatively nascent and still being explored in ancient DNA. And that also contributes to some of the huge interest in collectivising our ancestors and keeping them under curated, private collections, as opposed to within the domain of Indigenous communities so that this research progress, so to speak, goes unimpeded. So we have to really think about that in terms of arbitrary, ethical, legal guidelines versus are we actually doing our due diligence to providing care to our ancestors and really thinking about the implications of the research for Indigenous peoples that are living today?
Thanks to Krystal Tsosie from Vanderbilt University.
