Five South Dakota tribes are calling on the congressional delegation to help reinstate federal funding for a tribal data repository project led by the Native BioData Consortium, a genetics lab based in Eagle Butte on the Cheyenne River Reservation.
The project, known as the Data for Indigenous Implementations, Interventions, and Innovations Tribal Data Repository, lost its National Institutes of Health (NIH) funding in March due to broad cuts to COVID-19 research. Tribal leaders from the Oglala, Cheyenne River, Rosebud, Lower Brule, and Standing Rock Sioux tribes say the project’s goals extend beyond pandemic response, aiming to safeguard tribal health data and build trust between Indigenous communities and researchers.
The Eagle Butte lab received the largest share of the project’s $7 million grant but used only a third of its allocation before funding was revoked. The lab’s director, Joseph Yracheta, emphasized the need for a secure, Indigenous-led database that allows tribes to control how their genetic and health data is used.
Concerns over data misuse stem from past incidents, including a case where the Havasupai Tribe’s DNA was used for unauthorized research. Yracheta and his team have built infrastructure for the repository, including servers, contract templates, and educational materials, but say more work is needed to build relationships and fill the database.
Letters from tribal leaders and project officials were sent to Rep. Dusty Johnson, urging support for renewed funding. Johnson’s office confirmed it is in contact with NIH. Sen. Mike Rounds’ staff also reached out for more information, while Sen. John Thune’s office has not responded.
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