Tribal Engagement | All of Us

Overview

All of Us welcomes people from all communities, especially those that have been left out of research in the past, including American Indian and Alaska Native (AI/AN) people. When more communities take part in studies, researchers can close information gaps and find ways to improve health for all.

Recognizing that Tribes in the United States are sovereign nations, the All of Us Research Program has ongoing conversations with Tribal leaders and members across the country to better understand the views and concerns of Tribal communities and find ways to build a strong program together.

We also work with partner organizations to help further engage Tribal Nations, AI/AN populations, and Indigenous communities and to advance responsible and community-led participation in All of Us.

Tribal Commitments

Some Tribes have concerns about taking part in research studies. All of Us meets with Tribal leaders at formal meetings called "consultations" to learn more about their views. Following consultations in 2019 and 2023, the program prepared reports summarizing the feedback received and plans developed in response—including efforts to collaborate with Tribal Nations, protect data, engage AI/AN researchers, and more.

These reports establish the program's foundational commitments to Tribal Nations, including:

  • We will respect Tribal sovereignty by engaging Tribal Nations to ensure that research using the program's biospecimens and data from Tribal members is done in a way that is respectful of applicable Tribal customs, culture, and laws.
  • We will work to include as much diversity of AI/AN populations as possible in the program by partnering with Tribes and with organizations with urban Indian expertise that want to collaborate.
  • We will not recruit on Tribal lands without first obtaining approval from the Tribe.
  • We will not share information about participants' Tribal affiliation without first getting approval from the Tribe.
  • We will support the development of policies and educational materials for researchers and participants, work with AI/AN researchers in partnership with AI/AN communities, and promote community-based participatory research.
  • We will work to ensure representation of AI/AN populations throughout all aspects of program governance.

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Tribal Collaboration Working Group

The Tribal Collaboration Working Group (TCWG), a working group of the All of Us Research Program Advisory Panel, provides guidance on the inclusion of American Indian and Alaska Native (AI/AN) populations in the program. The TCWG identifies strategies for developing meaningful, culturally sensitive collaborations with AI/AN populations and offers input to the Advisory Panel describing collaboration opportunities and potential challenges.

Key Milestones

Tribal Consultations

The All of Us Research Program consults with Tribal leaders through formal government-to-government consultations, as part of the program's commitment to respecting Tribal sovereignty. These reports document the feedback received and the program's response.

2019 Tribal Consultation

From May to November 2019, All of Us hosted a series of Tribal consultations across the country—including listening sessions and a formal request for information—to hear input from Tribal leaders about engaging with Tribal Nations and the inclusion of AI/AN individuals.

- Announced the 2019 consultation series and listening sessions.

- Participant-facing communication sent to AI/AN participants during the consultation period, explaining the data hold and what it meant for them.

- Covers the 2019 consultation process across five themes: Tribal sovereignty, cultural sensitivity, data protection, governance, and sensitive data.

2020 COVID-19 Serology Study Consultation

In May 2020, All of Us held a rapid-response Tribal consultation to discuss whether to include existing AI/AN participant samples in the All of Us COVID-19 Serology Study. Tribal leaders raised concerns about potential stigmatization and misrepresentation based on results from a small number of participants. After careful consideration, the program decided not to include AI/AN samples in the study.

2023 Tribal Consultation

In June 2023, All of Us held four virtual informational sessions for Tribal communities covering program overview, researcher data access, AI/AN self-identification in data, and program partnerships. A formal Tribal consultation followed on September 28, 2023, on integrating data from self-identified AI/AN participants in the Researcher Workbench, Tribal engagement and outreach, and planned program activities including children's enrollment.

- Announced the 2023 informational sessions and September 2023 Tribal consultation.

- Follow-up notice of the September 28, 2023 consultation with registration details.

See Past Events for presentation slides and recordings for all four sessions.

- Covers the 2023 consultation on Tribal engagement, AI/AN data integration, and planned program activities.

- Post-consultation follow-up letter summarizing the six 2023 report themes, reporting expanded AI/AN governance, and announcing the planned AI/AN data release.

AI/AN Data for Research

Data contributed by self-identified American Indian and/or Alaska Native participants are now available in the All of Us Researcher Workbench. In 2025, the program integrated data from more than 30,000 participants who self-identify as AI/AN, following a Tribal consultation.

Expanded protections are in place for responsible use of these data, supplementing the program's existing privacy and security safeguards:

  • A new policy on research involving AI/AN data forbids researchers from attempting to re-identify AI/AN individuals, their regions, or their Tribal affiliations. Researchers must undergo updated training and agree to program policies before accessing participant data.
  • Additional guidance for researchers further reinforces our requirements and helps them understand and interpret All of Us' AI/AN data appropriately. Working with All of Us data shared by American Indian and Alaska Native participants .
  • The Resource Access Board (RAB) includes additional Indigenous voices and coordinates reviews of projects using AI/AN data.
  • Indigenous-led research demonstration teams reviewed the data and helped inform researcher guidance.

Important limitations: The dataset relies on self-reported data and cannot be used to draw conclusions about Indian Country overall or about specific Tribes. Self-identification does not indicate official enrollment or descendancy status within a Tribe. Tribal affiliation is not made available to researchers.

To learn more about the limitations of these data, read a 

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Partners and Contact

We work closely with the following groups:

All of Us awardees that have supported Tribal engagement include:

  • American Indian Science and Engineering Society (AISES)
  • All of Us Wisconsin
  • University of Arizona

Additional Resources:

Questions or feedback? We're listening. Contact us anytime at AoUTribal@nih.gov .

Past Events

2023 Informational Sessions

2019 Consultation and Listening Sessions

  • October 22, 2019 -- Oklahoma Listening Session, Oklahoma City, OK
  • September 18, 2019 -- HHS Regional Consultation (Region 3), Providence Forge, VA
  • August 22, 2019 -- NIH Tribal Advisory Committee Meeting, Fairbanks, AK
  • August 21, 2019 -- HHS Regional Consultation (Regions 6, 7, 8), Denver, CO
  • August 7, 2019 -- Alaska Native Health Board Mega Meeting, Anchorage, AK
  • July 11, 2019 -- HHS Regional Consultation (Region 10), Spokane, WA
  • June 24, 2019 -- National Congress of American Indians Consultation, Sparks, NV
  • June 20, 2019 -- HHS Regional Consultation (Region 9), Sacramento, CA
  • June 18, 2019 -- United South & Eastern Tribes Listening Session, Nashville, TN
  • June 3, 2019 -- National Congress of American Indians All of Us Webinar
  • May 2, 2019 -- California Rural Indian Health Board Listening Session, Washington, DC

All of Us Research Program