Indigenous Nations Are Fighting To Take Back Their Data

ARIELLE DUHAIME-ROSS: This is Science Friday. I’m Arielle Duhaime-Ross.

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 them. The history of research on Indigenous communities in the US 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 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 and associate professor of public health at the University of Arizona in Tucson. She is Ahtna and a citizen of the native village of Kluti-Kaah in Alaska. Dr. Krystal Tsosie, 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.

STEPHANIE CARROLL: Hello.

KRYSTAL TSOSIE: Thank you. It’s a pleasure being here.

ARIELLE DUHAIME-ROSS: 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?

STEPHANIE CARROLL: 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.

ARIELLE DUHAIME-ROSS: Krystal, you’ve had a personal experience with the dynamic we’re talking about here. Was there a moment when you realized that research could be colonial in nature?

KRYSTAL TSOSIE: 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 at some of the top-ranked institutions in the US. 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 preventative health care. In some cases– 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 physicians, 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 blockbuster drug. But a question, of course, is whether or not these next innovations are going to help those who are already disenfranchised by broken health care system.

ARIELLE DUHAIME-ROSS: 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?

KRYSTAL TSOSIE: Fundamentally, I think we want to see that Indigenous peoples are among the first to 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, 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 promised.

ARIELLE DUHAIME-ROSS: In the last few years, there’s been a huge wave of progress on the Indigenous data sovereignty front. What spurred that on exactly?

STEPHANIE CARROLL: 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 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.

KRYSTAL TSOSIE: My space is in genetics and genomics. 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 peoples 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 treating Indigenous bodies as fonts of discovery 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.

ARIELLE DUHAIME-ROSS: 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?

STEPHANIE CARROLL: 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 access 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 in 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.

ARIELLE DUHAIME-ROSS: What’s the relationship between Indigenous nations and federally-funded research since the government regularly runs censuses and surveys?

KRYSTAL TSOSIE: 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 tribal nations. There’s always been this huge battle as to how do tribal 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.

ARIELLE DUHAIME-ROSS: And, Krystal, you’ve done some of that work. You founded the Native BioData Consortium. Can you tell me what that consortium does? I believe you store research data. Is that correct?

KRYSTAL TSOSIE: 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 in charge of thinking about research questions, which are going to be fundamentally more consistent with their lived experiences compared to 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.

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 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.

ARIELLE DUHAIME-ROSS: That’s beautiful. Can you tell me about one of the projects the consortium is working on?

KRYSTAL TSOSIE: One project that we’re working on is to create a tribal data repository to house specifically data that has resulted from a National Institutes of Health-funded research, creating this resource in which tribes, if they consent to, 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 research questions that actually directly impact them.

ARIELLE DUHAIME-ROSS: Stephanie, you direct the collaboratory for Indigenous Data Governance. What’s a specific project that you’re excited about?

STEPHANIE CARROLL: 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 peoples’ 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 Krystal was talking about is that we think about, for instance, the federal government or foundations who are 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 US 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.

ARIELLE DUHAIME-ROSS: Stephanie, you also just organized the first ever Indigenous data sovereignty summit. It happened last month. What did that mean to you?

STEPHANIE CARROLL: 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.

ARIELLE DUHAIME-ROSS: 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 US, 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? Who is this for?

STEPHANIE CARROLL: Indigenous data sovereignty was created out of Indigenous design and Indigenous aspirations, and I’m going to be honest with you. When we release 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 data 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 peoples’ 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.

ARIELLE DUHAIME-ROSS: Very good point. Thank you both so much for joining me.

STEPHANIE CARROLL: Thank you.

KRYSTAL TSOSIE: Thank you.

ARIELLE DUHAIME-ROSS: 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. Krystal Tsosie 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 Kronyk for consulting on this segment.

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