The National Institutes of Health (NIH) Tribal Health Research Office (THRO) convened Tribal leaders, Indigenous scientists, and data sovereignty subject matter experts for their Indigenous Data Sovereignty meeting held on September 16-17, 2024. THRO’s leadership is guiding the development of an NIH Indigenous Data Sovereignty (IDS) Policy that will advance Indigenous data governance. We anticipate the release of a Dear Tribal Leader Letter (DTLL) soon to outline structural changes for 2025.
While there is much to be discussed in a soon to be announced Tribal Consultation, it is promising that Tribal and Indigenous leaders will have stronger autonomy and decision-making power on proposed studies by universities and agencies. Discussions during the IDS meeting included Indigenous consent in data collection and dissemination; defining and implementing best practices; data stewardship and data sharing; managing end-of-project data; ethical dissemination strategies; enhancing cultural preservation; and expanding Indigenous ownership and authority over data. Day one of the meeting can be watched here.
Following the IDS meeting, Tribal leaders met for the NIH Tribal Advisory Committee (TAC) meeting which can be watched here. The TAC meeting included a presentation from Dr. Jorgenson, NIH Associate Director for Science Policy, on the Disposition of Biospecimen Collected. NIH is in the process of identifying and returning biospecimens collected from Tribal and Indigenous communities and additional information will be forthcoming to Tribal leaders throughout this process. Tribal leaders then met with Dr. Schwetz, Deputy Director for Program Coordination, Planning and Strategic Initiatives on emerging Tribal priorities. Concluding the meeting, THRO will be supporting updates and revisions to the TAC strategic plan.
NIHB will keep Tribal leaders posted on the release of a DTLL and drafted IDS policy. We send our gratitude to Tribal leaders, scientists, and community members who have advocated for these structural changes and strongly encourage your continuing participation to provide high-quality and culturally appropriate feedback on the soon to be released IDS policy.
National Indian Health Board