How the First Indigenous-Led Biorepository Is Asserting Sovereignty and Channeling New Support

Among the recipients of the MacArthur Foundation’s latest $80 million in Equitable Recovery grants is an organization working in what its own board secretary calls a “very narrow niche”—the collection and study of biodata from Indigenous populations.

But this field, and the story of how this Indigenous-led organization attracted $2 million from MacArthur, offers important lessons for funders and other Indigenous-led nonprofit organizations.

The Native BioData Consortium (NBDC) is the first Indigenous-led biorepository, or “biobank,” and first 501(c)(3) nonprofit research institute led by Indigenous scientists and tribal members in the United States. It exists, in part, to better answer the long-ignored question: When Indigenous peoples participate in genetics-related medical studies, what are they getting out of it?

Prior to the NBDC’s founding just three years ago, the answer was little to nothing. Here are just two of many, many examples.

After researchers came and drew blood twice from the Karitiana people in Brazil in exchange for the promise of medicine, decades later, the Karitiana discovered that their DNA was being sold for $85 a sample. No medicine ever came.

And here in the U.S., according to the NBDC’s board secretary Krystal Tsosie, the O’odham people in Arizona (“Awtham,” whose colonialized, Anglicized name is “Pima”) participated in National Institutes of Health (NIH) research into diabetes for roughly 40 years, finally ending the relationship in the early 2000s. Despite their generosity in allowing the NIH to use them for studies for four decades, a March survey by the Arizona Department of Health’s Bureau of Women’s and Children’s Health found that the O’odham still struggle to access basic healthcare.

When the O’odham decided to end their partnership with the NIH, Tsosie said, “A huge question was, what are they getting out of [being research subjects]? And what are they getting out of this partnership that they can’t do themselves?”

This disillusionment coincided with a growing new reality for Native peoples who want to determine how, when and by whom their biological data is being used. For the first time in history, Tsosie said, there’s a sufficient critical mass of Indigenous scientists and academics available that Indigenous people can decide on and direct the work themselves. Tsosie, for example, holds master’s degrees in both bioethics and public health and is currently a Ph.D. candidate studying genomics and health disparities. The rest of the NBDC’s board is similarly successful by Western measures, with Ph.D.s, master’s degrees and professional experience ranging from entrepreneurship to research science.

That range of academic, scientific and other expertise is being put to use well beyond the creation and administration of the organization’s biobank. The NBDC is working with partners to conduct research into areas including rheumatoid arthritis, gene editing and soil wealth. Board members have contributed to the wider body of knowledge, with papers in relevant academic journals. In addition, they hold workshops for Indigenous science students, including a NASA STEAM Camp in Eagle Butte, South Dakota.

Concrete plans and “a grander vision”

It was the NBDC’s combination of a “very concrete plan to reduce the silos between research data and public health” and its commitment to improving health outcomes for Native peoples—along with what the MacArthur Foundation’s Managing Director of Programs Stephanie Platz called its “grander vision”—that made the organization an attractive candidate for MacArthur’s equitable recovery grants.

While recipients of MacArthur’s $80 million in Equitable Recovery grants were announced in July of this year, the foundation made the initial commitment in June of 2020—to move special, additional grants to nonprofit organizations through the dual traumas of the COVID pandemic and “the epidemic of social injustice.” The program is part of a $1.7 billion, three-year partnership between MacArthur and funders including the Ford, Kellogg and Andrew W. Mellon foundations. In addition to the NBDC, the latest round of Equitable Recovery grantees include organizations working on reparations for slavery, a racial equity reform agenda in Illinois and the Decolonizing Wealth Project.

The program kicked off last fall with $40 million for initiatives including protecting the 2020 election, addressing anti-Black racism, and supporting Native efforts to recover from the impact of COVID-19.

The “grander vision” Platz alluded to crosses colonialist political boundaries. The NBDC’s board is composed almost entirely of Indigenous people and includes members from New Zealand (Maori), Canada (First Nations) and individuals within the U.S. whose cultural ties are with Mexican Indigenous peoples. The MacArthur grant, which is unrestricted, comes from an initial pool of 15 grants totaling $16 million that the funder earmarked for “self-determination of Indigenous peoples.”

A pitch that paid off

Despite MacArthur’s excitement about the NBDC’s work, the grant may never have happened if the NBDC hadn’t asked.

While the NBDC is now making a splash in the news—with coverage since last spring in science-focused publications and the New York Times—the organization is still both very new and relatively unknown. Originally, the consortium approached MacArthur, in partnership with a fundraising consultant, for a grant from a different pot of funds. Their pitch “was not a good fit” for those funds, Platz said, “but my interest was piqued because we were doing the Equitable Recovery grantmaking. So I invited a program officer to join me and we had a tremendously exciting conversation with them.”

Tsosie told me that unrestricted funds are particularly important for much of the NBDC’s work. While the organization has received funding from the NIH and the National Science Foundation, she said, “the problem with those mechanisms is they’re so project-oriented, and they’re very limited in time frame, and they’re very limited in what you can actually fund.” They also come with the assumption that the receiving organization already has staff and facilities in place, she said.

Restricted federal grants also can’t be used to pay the two teams of attorneys the NBDC employs to create data sharing agreements that assert Native people’s sovereignty over the work. “It’s also important for tribal nations to be able to have these agreements already in place before they even enter into a research relationship with a university or any other type of partner,” Tsosie said. And, she added, “those legal fees are not cheap.”

COVID-19 opened eyes, and some doors

The NBDC’s pitch to MacArthur also benefited from its timing. Before the pandemic, Tsosie said, her organization’s “very narrow niche”—a nonprofit, Indigenous-led, biorepository and research organization—was “kind of a hard niche to find funding for.”

The pandemic freed up some funding that would otherwise have been directed toward on-the-ground community work. Simultaneously, Tsosie said, “there was just a huge understanding that Indigenous communities needed sustained support that they could also self-direct. And, you know, non-Indigenous organizations realized that they have no idea what that looked like.” As a result, Tsosie said, “It felt like philanthropic organizations became more free with how they were able to disseminate funds.”

Lessons for funders and nonprofits

That newfound freedom with the purse strings will be essential for funders who are serious about making positive changes in global health outcomes. A week prior to our interview, Tsosie said, she was at a meeting sponsored by the First Nations Development Institute. A large part of the conversation there centered on ways to educate funders about “what it means to assert Indigenous data sovereignties and also be able to conduct Indigenous evaluation.”

The message: Funders need to be “less prescriptive, and also, we have to think less quantitatively and less narrowly in how we evaluate programs, and more holistically and globally in terms of time frame, in terms of scale, and in terms of impact.”

That’s because “health is not just one thing,” but the result of a complex interaction of systems that include genetics, environment, culture, economics and legal systems. It’s also essential, Tsosie said, to look into the ethical and social impacts of the work that’s being done and who benefits from that work.

Funders who continue to emphasize calls for proposals that isolate very narrow aspects of those interweaving systems, Tsosie said, “[are] not going to impact global health outcomes in the same way they think it will. The way to really have that global impact is to look more holistically at health.”

Tsosie also offered another caution to funders and the Indigenous-led nonprofits that may seek money from them. From the beginning, she said, the NBDC’s underlying ethic has been: “We did not want to work with partners that were simply looking to us as a means of collecting Indigenous and biological information for their own needs.” This ethic, she said, also means that the consortium has no interest in working with companies that have historically harmed Indigenous communities or entities with “a direct commercial interest in engaging or partnering with Indigenous communities.”

When it comes to engaging with Indigenous communities, she said, “Too often, I’ve seen outsiders use the word ‘engagement’ as a form of PR.”

“We don’t want the word ‘engagement’ to just be a bare minimum checklist of, oh, you had one conversation with the community. That’s not adequate for engagement. Engagement also entails equity.”

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