Science Friday - Indigenous Nations Are Fighting To Take Back Their Data

Episode Date: June 5, 2024

You might’ve heard this phrase before: data equals power. Because when you have data, you can decide how they’re used and who gets to use them.The history of research on Indigenous communities in the United States is full of stories of exploitation, power imbalances, and stolen knowledge. Be it through the iodine experiments of the 1950s in Alaska, the racist and pseudoscientific conclusions drawn by American anthropologists in the 20th century, or through more recent examples in which genetic data from communities were used in studies without their consent— these practices have caused lasting mistrust and harm.The growing field of Indigenous data sovereignty demands that Native communities maintain the right to decide how data about their people are collected, owned, and used.Guest host Arielle Duhaime-Ross talks with two people at the forefront of this movement: Dr. Stephanie Carroll is the director of the Collaboratory for Indigenous Data Governance and an associate professor of public health at the University of Arizona in Tucson. She is also Ahtna and a citizen of the Native Village of Kluti-Kaah in Alaska. Dr. Krystal Tsosie is a co-founder of the Native BioData Consortium and an assistant professor and geneticist-bioethicist at Arizona State University in Tempe. She’s a member of Navajo Nation. They discuss how data on Indigenous Peoples has been used and abused, why data sovereignty is more important than ever, and what solutions look like.Transcripts for each segment will be available after the show airs on sciencefriday.com. Subscribe to this podcast. Plus, to stay updated on all things science, sign up for Science Friday's newsletters.

Data is a resource, and indigenous nations want theirs back. As we saw settler colonial movement across the country and taking of land and taking of people, today we're taking of data. This is the new quote-unquote frontier. It's Wednesday, June 5th, and you're listening to Science Friday. I'm SciFRI producer Rasha Aridi. You might have heard this phrase before, data equals power. Because when you have data, you can decide how they're used and who gets to use. use them. The growing field of indigenous data sovereignty is fighting for that power to go back

to the hands of indigenous nations and peoples. So today on the show, we'll dig into the history of data colonialism, instances of data misuse and abuse, and what the future of indigenous data sovereignty could look like. Here's guest host Ariel Doormoros. The history of research on indigenous communities in the U.S. is full of stories of exploitation, power imbalances, and stolen knowledge. Be it through the iodine experiments of the 1950s in LASCA, the racist and pseudoscientific conclusions drawn by American anthropologists in the 20th century, or through more recent examples in which genetic data from communities were used in studies without their consent, these practices have caused lasting mistrust and harm. The growing field of indigenous data

sovereignty demands that indigenous communities have the right to decide how data about their people are collected, owned, and used. Joining me now are two people on the forefront of this movement. Dr. Stephanie Carroll, director of the Collaboratory for Indigenous Data Governance, an associate professor of public health at the University of Arizona in Tucson. She is Otna and a citizen of the native village of Cluticaa in Alaska. Dr. Crystal Sosi, co-founder of the native biodata consortium and assistant professor and geneticist bioethicist at Arizona State University in Tempe.

She's a member of Navajo Nation. Welcome to Science Friday. Hello. Thank you. It's a pleasure being here. Thank you so much for coming on the show. So, Stephanie, many conversations around the movement of data sovereignty mentioned data colonialism. Can you tell me what that means and what's the history behind it?

The history behind it is really today how data are being used in the furthering for us here in the United States of the colonial project. And so as we saw settler colonial movement across the country and taking of land and taking of people, today we see taking of data. This is the new quote unquote frontier and the new area of theft as we see the digital environment and our data writ large expanding explosively. Crystal, you've had a personal experience with the dynamic we're talking about here. Was there a moment when you realize that research could be colonial in nature? So I've actually been a graduate student for a really long time. And one of my first degree programs was actually in cancer biology. And I had the distinct honor of interviewing some of the top-ranked institutions in the U.S.

At one institution, I just saw two cancer biologists having an ego measuring contest as to who had more drug patents on their walls. And I realized that if I were to continue in the space of cancer biology, that I could spend most of my time potentially laboring for a project that may not even benefit my own people. My people are struggling to even get access to prevent health care. In some cases, you know, we're told not to, of course, but we're splitting antibiotics and hoarding medications because we don't have ready access to primary care positions. And now switched from cancer biology to genomics is this new frontier of data exploitation in which we are mining data and DNA from indigenous peoples and we are selling it to drug

companies in the hopes that we might find the next Blackbuster drug. But a question, of course, is whether or not these next innovations are going to help those who are already disenfranchised to buy broken health care system. Right. So along those lines, what does the Indigenous data sovereignty movement wish to see when it comes to genetic studies and the general gathering of genetic data? Fundamentally, I think we want to see that Indigenous peoples are among the first to best benefit from their own DNA and their own data. We've seen it time and time again where scientists and researchers come into remote indigenous communities and villages and they take blood samples and leave, promising that

their data is going to help benefit to bring therapies and therapeutics to the people. Some of these projects were called vampire projects or helicopter projects. And unfortunately, you know, in some cases, reporters have come back to these communities and have stated, well, now access to your information is being sold by cell repositories at a rate of $75 to $85 a vial. And, of course, indigenous peoples are dismayed. They're shocked because they're still waiting for those therapies that they were. were promised. In the last few years, there's been a huge wave of progress on the indigenous data sovereignty front. What spurred that on exactly? That progress occurred as a result of the confluence of a few events. So definitely the COVID pandemic provided an opportunity and also challenges.

We saw the desperate need for data and information across the globe. And for indigenous communities who were hit hard by the pandemic, but also had really, really, aggressive and also beautiful responses to the needs of their communities. Having information around what was going on was necessary. Also, climate change is a pressing need for information. And so being able to advance indigenous interests and protect indigenous communities during climate change demands that indigenous peoples both have access to data that they might not have access to like weather data or heat data, as well as be able to govern and control those data. And then the third piece is really this explosion of digital technologies and the advancement

of data in general. My space is in genuexogenomics. One of the first large-scale diversity projects, which launched really not too long ago in the mid-1990s, the Human Genome Diversity Project, expressed this urgency of sampling indigenous people's genomic data before indigenous peoples, quote, vanished. And that was actual wording that scientists used in publications. And it was this urgency of getting our information before indigenous peoples either disappeared from the face of the earth due to extinction, colonialism, assimilation. and it was just like treating indigenous bodies as fonts of discovery for for driving scientific discovery. It's a new form of colonialism. And that's why it is so important for indigenous peoples to assert their rights related to their data in all spaces.

I want to come back to the idea of COVID-19 having played a role in this. How easy was it for COVID-19 surveillance data to be misused? or abused in the early months of the pandemic. One of my least favorite stories of how COVID-19 data, specifically surveillance data, was misused, is that we had this notion and this desire early on in the pandemic for lots of information to try to figure out or even know what was going on because we as individuals and communities had so little information. And so the state of New Mexico, for instance, was really lauded as being at the

forefront of making open access to zip code level data available for COVID-19 incidents and so forth. Contrasting it to the state that I live in, Arizona, what we saw that was as the state put up data at zip code level, they masked data if it was within tribal jurisdictions until they had tribal permission to release those data publicly. That seems like a counterintuitive action, but what it actually resulted in on the Arizona side was more negotiation around how tribes accessed data and could use those data and could control the spread of that data. On the New Mexico side, what ended up happening was you had situations like journalists and corporate entities having easier access to the data about indigenous communities than indigenous

communities had themselves. And in one incident, Lovelace Hospital used those data to differentially treat. people who came into some of their departments, including labor and delivery, resulting in anyone who had a quote unquote Pueblo zip code being tested for COVID. And if their results did not come back before they gave birth, the child was separated from the mother, which we know is not a good way to start off life and is an effect an act of racial profiling because those data were being used in a way that was negatively impacting and not actually based in true science about what was happening and who needed to be protected. What's the relationship between indigenous nations

and federally funded research since the government regularly runs censuses and surveys? So part of the issue here is this question of who owns data versus who stewards data. There's an issue here that many tribal nation leaders are reticent to engage in federally funded research because that data that results from fully funded research gets deposited in databases that are outside of the jurisdiction or review processes of travel nations. There's always been this huge battle as to like how do travel nations also have some authority or oversight to ensure that what researchers are saying or narrating about their peoples are actually beneficial as opposed to reifying negative stereotypes. And because there really aren't

these equitable processes in place, then many tribal nations just feel like, well, it's better not to engage in fully funded research to begin with. That is very much a lose-lose situation, but it's a situation that protects indigenous peoples from potential harms down the line. Another way is that tribal nations can also exercise their sovereignty and create research structures in place so that they actually have more oversight as an approval over the types of research studies that are conducted with there's people's data. Right. And Crystal, you've done some of that work, right? You founded the Native Biodata Consortium. Can you tell me what that consortium does? I believe you store research data. Is that correct? Yeah, I am really honored to be in company with not only excellent indigenous scholars, but indigenous community leaders and members who all came forward with this beautiful idea of data for us, by us. So having indigenous peoples, I am in charge of thinking about research questions, which are going to be fundamentally more consistent with the, their lived experiences compared to like a non-indigenous outsider,

formulating those research questions for them. And also thinking about consent in new ways, rather than going back to these broad consent models and making open data everything, which is the default model that has already caused so many problems. Like it's all about thinking about data as the resource that it is. A lot of our natural resources, like our lands and our waters have been stripped from us, But, you know, data is something that we can return back to the people and use to restore our own ways of living and our ways of continuing the future.

That's beautiful. Can you tell me about one of the projects the consortium is working on? One project that we're working on is to create a tribal data repository to house specifically data that has resulted from National Institutes of Health funded research. creating this resource in which tribes that they consent to, which is a very safe repository that is governed and stewarded by indigenous community representatives, and may also create an analytical workspace for community members to be able to train other indigenous students and up-and-coming data leaders in using the data. And hopefully, enabling people to study questions that actually directly impact them. Stephanie, you direct the Collaboratory for Indigenous Data Governance. What's a specific project that you're excited about?

I'm very excited to be involved in projects that work to set guidelines for different institutions and user types. And so right now, funded by the Luce Foundation, we're working to create a set of indicators for implementation of the care principles for Indigenous data governance. So the care principles are very high level and set out minimum expectations for researchers and institutions to engage with indigenous pupils data, kind of pointing them back home to the indigenous communities to see how those communities want and have expectations for the care of their knowledge. And so one of the fascinating pieces about this that links back to what you were speaking about earlier and what Crystal was talking about is that we think about, for instance, the federal government or foundations who are funding. funding indigenous research in indigenous communities, but also outside of indigenous communities. And there are so many flaws in the system right now, from bias in the review process to who gets funded, to bias in how those dollars are distributed. So whether or not they can go to, for instance,

a big university versus a tribal community. And then the giant bias we see here in the U.S. is that there is a bias against indigenous science. And so we're always having to prove that our ways of knowing and doing within the scientific environment are valid. Stephanie, you also just organized the first ever Indigenous Data Sovereignty Summit. It happened last month. What did that mean to you? That was a long time coming. And it was extremely satisfying and made me very, very excited to see how much was.

going on in the United States around Indigenous data sovereignty and Indigenous data governance. We saw relationships being formed between tribal leaders and indigenous scholars. We saw concrete actions that tribal communities are taking around Indigenous data sovereignty, but also actions that federal government agencies are trying to engage tribal communities in towards indigenous data sovereignty. I have to say, as a Black person, it's impossible for me to listen to you, talk about this, without seeing the parallels with the experience of black Americans in the U.S., specifically around scientific exploitation.

There's a long history there as well. Can the idea of data sovereignty be applied to other groups or to everyone? You know, who is this for? Indigenous data sovereignty was created out of indigenous design and indigenous aspirations. And I'm going to be honest with you, when we released the care principles for indigenous data governance, the first email I got was from somebody in the EU Parliament who was interested in the care principles because of the ideas around collectives and collective rights and collective benefits. And so our response for a number of years have been, if you really like Indigenous

State of sovereignty and the movement we're making in terms of changes to policies, changes to infrastructure, changes to practices, then let us continue to design. But at the same time, we are creating that space for participation and the upholding of other people's rights. And so if you think of anything from metadata infrastructure where you might create a space for the recording of the provenance of indigenous people's data, that same space can be used for the provenance of any community's data, furthering the connection that we have to our information as it travels through the digital environment. Very good point. Thank you both so much for joining me. Thank you. Thank you. Dr. Stephanie Carroll is the director of the Collaboratory for Indigenous Data Governance and Associate Professor of Public Health at the University of Arizona in Tucson.

Dr. Crystal Sosi is the co-founder of the Native Biodata Consortium and an assistant professor and geneticist bioethicist at the Arizona State University in Tempe. Special thanks to Rhonda Chronic for consulting on this segment. That wraps up today's show. Lots of folks help make this show happen, including Kathleen Davis, Diana Plasker, Jordan Smudjick, Charles Bergquist. On tomorrow's episode, unlocking the mysteries of the bird's vocal organ, the syrinx, and how the calls of one avian pop star have infiltrated the music industry. Catch you then. I'm SciFry producer, Rasha Eri.