Native BioData Consortium’s Eagle Butte lab led an NIH-funded effort to build a Tribal data repository to give Indigenous nations control over genetic and health data, but federal COVID-19 research funding was cut this spring. Five South Dakota tribes asked Rep. Dusty Johnson to press NIH to reinstate the grant; the Eagle Butte team had spent roughly one-third of its approximately $3 million allocation before funding was revoked. The project delivered servers, a user interface and 82 contract templates, but leaders say the critical next step is building trust with Tribal nations so data can be shared under sovereign terms.
Tribes Urge Congress to Restore NIH Funding for Eagle Butte Indigenous-Led Genetic Data Repository
Native BioData Consortium’s Eagle Butte lab led an NIH-funded effort to build a Tribal data repository to give Indigenous nations control over genetic and health data, but federal COVID-19 research funding was cut this spring. Five South Dakota tribes asked Rep. Dusty Johnson to press NIH to reinstate the grant; the Eagle Butte team had spent roughly one-third of its approximately $3 million allocation before funding was revoked. The project delivered servers, a user interface and 82 contract templates, but leaders say the critical next step is building trust with Tribal nations so data can be shared under sovereign terms.
05:38 AM, 11/10/2025Health
Five South Dakota tribes are pressing federal lawmakers to reinstate National Institutes of Health (NIH) funding for an Indigenous-led genetic and health data repository hosted at the Native BioData Consortium laboratory in Eagle Butte. Tribal leaders say the project — designed to give Tribal nations control over how their communities’ genetic and health data are stored and used — was cut amid a broader rollback of COVID-19 research funding this spring.
Project purpose and leadership
The Data for Indigenous Implementations, Interventions, and Innovations Tribal Data Repository is intended to be a secure, Tribe-governed database that allows Tribal nations to decide who can access their citizens’ data and under what terms. The Native BioData Consortium in Eagle Butte serves as the data host and one of the lead organizations. Project leadership also includes researchers from University of California–Santa Cruz, Arizona State University, the University of Wisconsin, the University of Washington and Ohio State University.
Funding, timeline and what was built
The project was publicly listed as receiving NIH support in December 2023. Sources describing the award have cited total project figures in the range of roughly $7–9 million; the Eagle Butte lab was reported to have an approximately $3 million share, of which it had spent about one-third before the funding was curtailed this spring. Work began in January 2024, but NIH later shortened the team’s timeline and subsequently reduced COVID-related research support.
Before funding ended, the team completed substantial technical and policy work: they built model servers in Eagle Butte and Wisconsin to keep data options off commercial cloud platforms, developed a user interface to link researchers with the appropriate tribal agreements, produced educational materials, and created 82 contract templates and related documents tribes can use when approached for genetic-data research.
Why tribes want a separate repository
Many Tribal nations are wary of open-data norms in biomedical research because of historical abuses and misuse of samples. Project co-founder Joseph Yracheta — executive director of the Native BioData Consortium and of P’urhépecha and Rarámurì descent with family ties to Cheyenne River Sioux Tribe — cited the Havasupai case as a key example: DNA given for a diabetes study in the 1990s was later used for other research without the tribe’s consent, leading to a lawsuit and a settlement.
“All we want to do is be a safe harbor,” Yracheta said, describing the repository as a way for tribes to share data for community benefit while protecting sovereignty, consent and privacy.
A research letter published by the project team in Nature argued that mainstream scientific practices assume genomic data should be freely shared and harmonized, a model that can clash with Tribal priorities about consent, privacy and governance. The repository framework aims to create a common access point while treating Tribal nations as sovereign decision-makers who must be consulted before data are reused.
Advocacy and next steps
Leaders from the Oglala, Cheyenne River, Rosebud, Lower Brule and Standing Rock Sioux tribes sent letters to U.S. Rep. Dusty Johnson asking him to press NIH to reinstate the funding, saying the project was “collateral damage in a blanket cut to all COVID-19 research” and that its value extends beyond pandemic response. Johnson’s office said it is looking into why the grant was canceled. Staff in Sen. Mike Rounds’s office have requested additional background from project leaders; Sen. John Thune’s office did not respond to requests for comment.
Project leaders emphasize that while technical infrastructure is largely in place, the most important remaining work is relationship-building — presenting the concept to Tribal nations, earning trust, and filling the repository with data under Tribal terms. Supporters argue the repository could improve responses to future public-health emergencies and advance Indigenous data sovereignty.
Editor’s note: This story was updated to correct a previous misstatement about the type of information to be collected under the federally funded project.