NIH chats with tribes on health data control at big convention
Published Date: 10/1/2026
Notice
Summary
The NIH is inviting Tribal leaders and members to join two important meetings and a listening session during the National Congress of American Indians Annual Convention in October 2026. They’ll talk about new health research projects, renewing support for Tribal health centers, and shaping a new Tribal Data Sovereignty Policy. Tribes can also send their thoughts by November 20, 2026, helping shape future health programs and policies.
Analyzed Economic Effects
4 provisions identified: 3 benefits, 0 costs, 1 mixed.
All of Us: external access to AI/AN biospecimens
If you are a Tribal leader or representative, NIH will hold a Tribal consultation on Monday, October 19, 2026, from 12:00 p.m. to 2:00 p.m. PT about two All of Us initiatives. One initiative would expand the program's data access model to include an added level of sensitive participant data requiring Institutional Review Board review, and the other would allow external researchers to apply for access to participants' biospecimens (such as blood, saliva, or urine), including samples from self-identified American Indian/Alaska Native participants.
Tribal Data Sovereignty policy input
If you are a Tribal Leader or designee, NIH will host a listening session on Tuesday, October 20, 2026, from 8:00 a.m. to 9:00 a.m. PT to gather guidance on the NIH Tribal Data Sovereignty Policy under development. NIH says it will consider input on how funding announcements, grant mechanisms, and research activities should recognize and uphold Tribal Nations' inherent sovereignty over data generated by, about, and within their communities.
RC-TEC renewal: Tribal epidemiology center input
If you represent a Tribal Epidemiology Center (TEC) or Tribe, NIH will hold a Tribal consultation on Tuesday, October 20, 2026, from 4:30 p.m. to 6:00 p.m. PT about proposed revisions to renew the NIMHD Resource Center for Tribal Epidemiology Centers (RC-TEC). NIH will provide an overview of proposed changes and seek Tribal input on potential implications for TECs and the Tribes they serve, including public health capacity, surveillance, and data systems.
How Tribes can submit input and participate
Tribes and Tribal organizations can attend the sessions at the Palm Springs Convention Center (277 N Avenida Caballeros) during the NCAI Annual Convention or may be able to join virtually if NIH makes a virtual option available; NIH gave the contact to request virtual participation. Written Tribal testimony for any consultation must be emailed and received by end of day on November 20, 2026, and should be on Tribal letterhead or clearly identify the submitting Tribe or Tribal organization.
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