NIH Hosting Tribal Engagements

SPECIAL NEWS FOR INDIAN COUNTRY

NIH All of Us Research Program Hosting Tribal Engagement Sessions

The All of Us Research Program (run by the National Institutes of Health) aims to accelerate health research and medical breakthroughs to enable an era of precision medicine for all. All of Us is committed to ensuring the program reflects the diversity of the United States. All of Us recognizes that American Indian and Alaska Native (AI/AN) individuals are underrepresented in health research and often are not included in sufficient numbers to arrive at scientifically valid conclusions about the population in national research studies.

The program’s Tribal engagement is driven by meaningful discussion and feedback from Indigenous leaders through Tribal consultation and dialogues. The Tribal Engagement team at All of Us will be hosting information sessions for AI/AN Tribal leaders, Indigenous-led organizations, Indigenous researchers, and community members across Tribal land and urban Indigenous communities.

The sessions will be held each Tuesday in June from 1:00-3:00 p.m ET.

Session 1: All of Us Research Program Overview and Tribal Engagement

[nih.zoomgov.com]Tuesday, June 6, 2023, 1:00-3:00 p.m. ET

Session 2: How Researchers Access and Use All of Us Data

[nih.zoomgov.com]Tuesday, June 13, 2023, 1:00-3:00 p.m. ET

Session 3: Describing Self-Identified AI/AN Participants in All of Us Data

[nih.zoomgov.com]Tuesday, June 20, 2023, 1:00-3:00 p.m. ET

Session 4: Data and Partnerships in All of Us

[nih.zoomgov.com]Tuesday, June 27, 2023, 1:00-3:00 p.m. ET

These information sessions will help inform a Tribal consultation being held on September 28, 2023. To access the registration for the Information Sessions please visit the Tribal Engagement site at allofus.nih.gov/TribalEngagement [allofus.nih.gov]. All the presentations will be recorded, and recordings will be posted at allofus.nih.gov/TribalEngagement [allofus.nih.gov].

More information about All of Us and NIHB:

For several years, Tribal leaders have expressed concerns over the All of Us Research Program to ensure this data collection is conducted in a manner that is respectful of applicable Tribal customs, cultures, and laws. As a program that collects sensitive biomedical data, the All of Us Research Program has a responsibility to institute special protections regarding how AI/AN data is collected, managed, and shared. The National Indian Health Board has advocated for Tribal data sovereignty and better protection of AI/AN data through the Secretary’s Tribal Advisory Committee for the U.S. Department of Health and Human Services, as well as with the NIH Tribal Advisory Committee and other avenues. The upcoming information sessions and Tribal consultation are an opportunity for Tribal leaders to engage directly with NIH to learn about the most recent steps NIH may have taken to address some of these concerns, to raise any additional issues related to the program, and to advocate for data practices that respect Tribal data sovereignty and protect Tribal citizens.

Tribal nations have inherent sovereign rights to govern research regarding their citizens. This includes the right to determine how all research is conducted, especially involving its citizens. Too often, non-AI/AN researchers have caused preventable harm to Tribal communities. The National Institutes of Health (NIH) and other federal agencies must modify their policies and processes to respect the sovereignty of Tribal nations and work purposefully to minimize the risk of harm to Tribal communities.

National Indian Health Board | www.nihb.org | 202-507-4070

Visit the NIHB COVID-19 Tribal Resource Center at:

www.nihb.org/covid-19

For media inquiries, contact Ned Johnson at [email protected].

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