All of Us Research Program
The NIH All of Us Research Program seeks to accelerate health research and medical breakthroughs by partnering with one million or more participants across the United States to build one of the most diverse databases in history. In 2019, the All of Us Research Program initiated Tribal Consultation to respectfully engage Tribal Nations about the inclusion of American Indian and Alaska Native (AI/AN) populations in this research program. To learn more, visit https://allofus.nih.gov/tribalengagement.
Key Outcomes
- After a nearly two-year consultation process, All of Us released its Tribal Consultation report in March 2021, summarizing the input received from tribal leaders and the program’s plans made in response. The report also outlines several commitments made to Tribal Nations.
- All of Us reiterated that it would never allow recruitment on tribal lands or release tribal affiliation to researchers without a tribe’s express agreement.
- The program also highlighted plans to create a training for researchers on the responsible use of AI/AN data, and to explore hosting workshops with AI/AN researchers and community members to learn more about tribal communities’ research priorities.
- The program also expanded representation of AI/AN members within its governance.
- The program created plain-language information about the Consultation for new and current AI/AN participants including a summary of the Consultation report for participants.
- The program will not begin sharing or processing AI/AN data or samples for an additional six months after Consultation so AI/AN participants will have time to review the report and, if they choose, talk to their tribal leaders about the program first. If AI/AN participants choose to leave the program before September 30, 2021, their data and samples will never be shared with researchers.
Read full Tribal Consultation Report.