Creation of the RADx Tribal Data Repository for Indigenous health data

The COVID pandemic drove rapid development of SARS-CoV-2 vaccines and innovative methods for COVID-19 testing, in part through the NIH-funded Rapid Acceleration of Diagnostics (RADx) program. The RADx Underserved Populations (RADx-UP) program extended efforts to include historically marginalized groups, such as Tribal Nations, in COVID-19 screening methods and vaccine testing.

But, while much of the data collected from federally-funded RADx efforts is available for researchers to access, data collected for members of Tribal Nations is not. The reason is that Tribal Nations have rights as sovereign entities in the United States and can establish their own governance without U.S. oversight.

Now, the NIH has selected a team of three Indigenous and one Latinx principal investigators to establish the RADx Tribal Data Repository (TDR). Among the team members is Dr. Matt Anderson, Associate Professor of Medical Genetics and a member of the Center for Genomic Science Innovation at UW-Madison.

“The RADx TDR seeks to empower Tribal communities in the decision-making process of what research looks like that is meant to benefit participating or partner groups. We hope that this demonstrates clearly that Tribal Nations are not anti-science but want to make sure that the science is done in a good way – one that demonstrates respect and provides benefit”

Dr. Matt Anderson

The TDR will house data from projects focused on Tribal citizens. The data will be managed separately from other data generated by the RADx program. The Repository will be specifically equipped to navigate the relationship between involved Tribal Nations and communities and scientific researchers.

Dr. Matt Anderson

Along with Dr. Anderson, the team includes Joseph Yracheta from the Native BioData Consortium on the Cheyenne River Reservation, the only Indigenous-owned and operated biorepository and research center in the world,  Dr. Krystal Tsosie at Arizona State University, and Dr. Soledad Fernandez at The Ohio State University. Together, the team envisions building the TDR to allow more direct involvement of participating Tribal communities in promoting research projects of interest brought forward by investigators.

One concern among historically underserved communities is having control over how their data will be used. The TDR will allow participating Tribal community members to opt in or out of specific research projects that use the data through more direct communication with researchers.

The project will also work with participating Tribal communities to understand considerations of participating in specific research projects and realize the motivations of researchers in accessing TDR data.

The University of Wisconsin–Madison will serve multiple roles to support both the fundamental data center infrastructure and the ethical engagement of the TDR and Tribes by researchers. The UW team led by Dr. Anderson will aid in the construction of the data access portal to increase data accessibility and ease of use by participating communities and researchers and provide second-site storage for the data.

The UW team will also convene a local community of Indigenous advisors to provide input on the steps taken by the RADx TDR team as they begin implementing conversations between Tribal communities and researchers. Dr. Anderson’s efforts will also provide ethics oversight specifically directed toward researchers.

This interdisciplinary project brings together expertise in data management and engagement of Tribal Nations in biomedical research that the University of Wisconsin–Madison is uniquely poised to lead into the future.