In response to the May 2020 Tribal Consultation on COVID-19 Research, the National Institutes of Health (NIH) incorporated Tribal input into the design of the Rapid Acceleration of Diagnostics (RADx) Initiative which led to the development of the RADx Underserved Populations (RADx-UP) program. This program develops community-engaged projects across the U.S. to assess and expand implementation of COVID-19 testing with special emphasis on underserved populations. Although NIH created the RADx Data Hub to make RADx data available to the research community, it does not meet cultural, governance, and sovereignty needs, or expectations to support and share de-identified American Indian and Alaska Native (AI/AN) RADx research data.
As such, the Office of Data Science Strategy (ODSS) in collaboration with the National Institute on Minority Health and Health Disparities (NIMHD), both part of NIH, initiated a Tribal Consultation to seek input from Tribal leaders on key issues critical to the creation of the RADx Initiative’s Tribal Data Repository (RADx TDR), including how to shape its ability to hold and share Tribal data that recognizes Tribal sovereignty and appropriate governance. A pre-Consultation informational webinar was held July 20, 2021 and the virtual Tribal Consultation was held July 30, 2021. Written feedback was accepted through August 30, 2021.
The creation of the RADx Tribal Data Repository is responsive to the historic experiences and harms related to data oversight and data sharing of AI/AN research data and the devastating impacts of COVID-19 on underserved populations. The RADx TDR is the first NIH research data repository designed to implement sovereignty-based governance that will provide responsible data sharing and data access to researchers and their collaborators who are generating or interested in working with RADx AI/AN research data.
- NIH received support from Tribal leaders (and/or their designees) for the RADx TDR. They emphasized the importance of Tribal sovereignty and governance and sustained Tribal Consultations and contact with Tribal nations contributing data to the RADx TDR.
- Tribal serving organizations and researchers underscored the importance of Tribal data stewardship, sustainability, data transfer, ownership, and use agreements.
Read the Tribal Consultation Response Letter.