Bioethicist is liaison in Indigenous research project

The National Institutes of Health (NIH) today announced a three-year award to fund development of a Tribal Data Repository, which is intended to become a hub of health data that solely represents, and is independently operated by, U.S. Indigenous peoples. 

Sue Trinidad is the project’s lone researcher from the University of Washington School of Medicine. A bioethicist, Trinidad will be a facilitator, aiming to identify common ground for research protocols and data management among the project’s Native and non-Native stakeholders.   

Trinidad spoke about her relevant experience and being a “bridge person” for this project. This Q&A has been edited for clarity and length.

Q: What’s your experience, or point of view, heading into this project?  Are you a member of a tribe? 

Trinidad: I am not. I'm a middle-aged white lady who has had the privilege of facilitating these kinds of conversations with tribal nations around the country. I think if we can make this work, it has the potential to change the way that the NIH engages with tribal nations. 

The repository is being seeded with COVID-specific research data that has already been collected as part of RADx-UP. We hope to start with 10 tribes. Of course, the hope is that more will join as we demonstrate that this is a trustworthy and valuable resource.

The challenge is that each of the 574 federally recognized tribes in the U.S. — and those that have not won recognition — has its own history, culture and sovereign government. They don’t share a single point of view about whether or how biomedical research should be done with their citizens. Some tribes have more money and political sway than others, so there's a need to ensure that these different interests are fairly represented. My hope is that, as an outsider who’s familiar with the issues and has no allegiance to any individual tribe, I can help open conversations. 

Q: What’s the intent of the repository? And why now?

Trinidad: The purpose is to create a mechanism and protocols for storing public health data that represents tribal citizens and to give tribes control of how that information is managed and shared. 

The majority of health research in the U.S. involves white [European-descended] people. That's not good; we think there are meaningful differences in how some diseases affect different populations, for a bunch of reasons. Indigenous peoples have been poorly represented in biomedical research for a long time — and not just in terms of who’s included in studies, but also in terms of having a voice in how to conduct research. Research has often failed to account for tribal priorities and values and has actively caused harm in some cases.

Another back story to this is All of Us, a separate NIH-funded database [founded in 2015] that aims to gather health data of 1 million people, oversampling for diversity and in support of precision medicine. In that project, disconnects have been recognized between how the NIH wanted to gather data and what tribal nations were expecting. 

This repository will have a much narrower slice of data than the All of Us database – and of course, the big difference is that it will be managed by Indigenous people in accord with the principles of Indigenous data sovereignty.

Q: Would the biomedical data in this repository be managed differently than it would be in a more general-population repository?

Trinidad: Yes, it may. In prior work, I’ve learned that some tribal communities do not abide the idea that bodily materials like a blood sample or hair or fingernail clippings could be treated as medical waste when a study is over. Bodily materials are “of the person.” When their research use is over, they must be returned to the person who gave the sample and special ceremony may be needed. 

To be clear, the repository won’t be collecting biospecimens, but you don’t need to keep physical samples on hand to know someone’s genetic makeup. It would be more challenging to create protocols that reflect the differing sensibilities toward how biospecimens are handled. 

It’s also worth mentioning that some tribal nations have expressed concerns about biopiracy and the ownership and patenting of DNA or of cell lines.

Q: Like the Henrietta Lacks case? [Lacks’ cancer cells were repeatedly reproduced in biomedical labs without consent or compensation, becoming one of the most important cell lines in medical research.]

Trinidad: Exactly. Another issue is that tribes have differing criteria for membership. Some tribes have adopted the view of blood quantum: That is, to be a citizen, you have to be at least ‘X’ fraction of Indian heritage. Not all tribes ascribe to that, but I’ve heard people express an existential fear about genetic research. There is concern that the government could analyze an individual’s blood sample and say their DNA doesn’t actually show Indian heritage, and that if that happens to enough tribal members, then the government could say the treaties don’t apply anymore because there are no Indians. Again, this repository is for public health data, not genetic information, but the issues are relevant to any kind of health research with Native American communities.

Q: So, whichever tribal nations choose to take part in this, will they have to support allowing the data in this biorepository to be shared with the NIH?

Trinidad: I think the exact parameters of sharing are to be negotiated. There is supposed to be a firewall between this repository and others. One big question to iron out is the extent to which tribes can set up different policies within the biorepository. If one nation says, “We're good with X, Y, Z policies,” and another says, “We're good with X only,” can both of those positions be accommodated? 

In principle, yes, absolutely, but mechanically, how do you do that? Because if you say you’ll respect each sovereign tribe’s demands about their citizens’ data, you have to be certain you can deliver on that. If that promise is made and then supposedly protected information is shared by mistake, it could be game-over. There’s also a risk that the repository ends up being mostly represented by the tribes that make the fewest demands. 

Q: What do you see as the initial steps to achieve toward the bigger-picture goals?

Trinidad: It’ll be a job of facilitating communication among groups and finding where we have areas of commonality and how we negotiate areas that are not shared. 

Initially, I think there will be a series of conversations to find out where each tribe stands on how to operationalize the repository and create structures and procedures for participatory governance. If we can figure out that and the mechanics of storing information differently, in a way that people are comfortable with, the next question is, how do you scale it? 

There are a few different issues to consider here. One is that, as the Urban Indian Health Institute has noted, health data on Indigenous groups are currently either under-reported or lumped together in ways that make it hard to see what’s really going on. Another is the numbers problem: There are certain kinds of research that require very large sample sizes – in some cases, greater than the number of the whole population you want to study. So another challenge is finding methods to work with smaller samples.

Related: News release from the Native BioData Consortium 

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