All of Us Tribal Engagement

The All of Us Research Program is committed to building a participant cohort that reflects the broad diversity of the United States so that everyone can benefit from the discoveries the program enables. As part of this commitment, All of Us is collaborating with American Indian and Alaska Native (AI/AN) communities to create a program that is welcoming, responsible, and culturally sensitive.

Recognizing that tribes in the U.S. are sovereign nations, the program is having 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.

What AI/AN Participants Need to Know
Tribal Engagement
Resources
For More Information

What AI/AN Participants Need to Know


Some tribes have concerns about taking part in research studies. All of Us has been meeting with tribal leaders at formal meetings called consultations. These meetings help us learn more about tribal leaders’ views so we can find ways to partner in the future. The program will incorporate that input into its plans.

For now, All of Us has decided to wait to share data from participants who self-identify as American Indian or Alaska Native. We’ve taken this approach out of respect for tribal communities and our participants, many of whom want more information about our recruitment strategies, policies, and efforts to reduce the risk of research that may be harmful to their communities. 

That means that their information is not currently included in the Data Browser or the upcoming Researcher Workbench. Further, the program will never share information about participants' tribal affiliation without first getting approval from the tribe.

We have also decided to wait to do genetic analyses on samples donated by American Indian and Alaska Native participants. This means that there may be a delay in returning DNA information to these participants.

We respect tribal sovereignty. If you are a member of an American Indian or Alaska Native tribe, we encourage you to talk to your tribal leaders about All of Us.

Learn More

Tribal Engagement


What We've Done So Far

All of Us has worked to develop a thoughtful approach to engagement, with input from individuals and groups who know tribal communities best. In 2017, All of Us established a Tribal Collaboration Working Group, consisting of tribal leaders, researchers, institutional review board members, and community members. The group’s report outlined best practices and considerations for research partnerships with tribal communities.

Since then, the program has undertaken additional activities to better understand tribal communities’ perspectives and concerns about participation, working in close coordination with NIH’s Tribal Health Research Office. These activities have included a formal tribal consultation process, a series of listening sessions around the country, conversations at meetings and conferences, a literature review, and a public request for information (RFI).

Our consultations with tribal leaders had several goals: to better understand the views and concerns of tribal communities, to respect tribal sovereignty, and to find ways to work together. We visited with tribal leaders and organizations across the country. We also got emails with many different questions, suggestions, and requests. Our recent period of tribal consultation concluded on November 30, 2019.

All of Us has pledged to not actively engage AI/AN communities until after finalizing a set of rules around engagement of these populations, based on plans developed through consultation. The program will also not recruit or allow its awardees to recruit on tribal lands without first obtaining approval from the tribe.

In response to the COVID-19 pandemic, NIH and the All of Us Research Program initiated a rapid-response consultation on May 21, 2020 to seek tribal leaders’ input on whether to include AI/AN participants in a study to identify antibodies to the novel coronavirus. After listening to feedback received during the consultation, All of Us made the decision to not include AI/AN participants and their samples in the serology study at this time. You can read more in our decision brief. All of Us will continue its main consultation activities, including tribal leaders' review of its summary consultation report.

What’s Next

All of Us has prepared a draft report based on input from the main consultation process. The report summarizes the comments and questions we received during consultation and shares plans for addressing the issues raised by tribal leaders. The draft report was reviewed by the NIH and the NIH Tribal Advisory Committee. A letter pdf | 58.12 KB with a link to the report was sent to tribal leaders in August with a request to provide feedback by Friday, October 16th.  

We are now carefully reviewing tribal leaders’ input and then will publicly post an updated report on this website in early 2021. As program activities progress, All of Us will continue to engage tribal leaders and explore opportunities to collaborate.

Resources


All of Us Research Program Protocol
Frequently Asked Questions about All of Us
NIH Consultation and Listening Sessions on the All of Us Research Program (2019)
All of Us Fact Sheet for Tribal Consultations (2019) pdf | 186.9 KB
All of Us COVID-19 Serology Study Consultation (2020)  All of Us Tribal Consultation Report Draft for Tribal Leader Input (2020) pdf | 453.06 KB

For More Information


To learn more about the All of Us Research Program’s tribal engagement activities, please join our listserv or contact us at AoUTribal@nih.gov.

California Rural Indian Health Board Listening Session

  • Location: Washington, DC
  • Date & Time: May 2, 2019, 1:00-2:00 pm ET

National Congress of American Indians All of Us Research Program Overview Webinar

United South & Eastern Tribes Listening Session

  • Location: Nashville, TN
  • Date & Time: June 18, 2019, 10:00 am CT
  • Event Details: Agenda pdf | 229.49 KB

HHS Regional Consultation (Region 9)

  • Location: Sacramento, CA
  • Date & Time: June 20, 2019, 1:30-2:30 pm PT
  • Event Details: Agenda

National Congress of American Indians Consultation

HHS Regional Consultation (Region 10)

  • Location: Spokane, WA
  • Date & Time: July 11, 2019, 1:30-2:30 pm PT
  • Event Details: Agenda

Alaska Native Health Board Mega Meeting Listening Session

  • Location: Anchorage, AK
  • Date & Time: August 7, 2019
  • Event Details: Agenda pdf | 230.74 KB

HHS Regional Consultation (Regions 6, 7 and 8)

  • Location: Denver, CO
  • Date & Time: August 21, 2019, 2:30-5:00 pm MT
  • Event Details: Agenda pdf | 81.8 KB

NIH Tribal Advisory Committee (TAC) In-Person Meeting

  • Location: Fairbanks, AK
  • Date & Time: August 22, 2019, 1:00-2:00 pm AT

HHS Regional Consultation (Region 3)

  • Location: Providence Forge, VA
  • Date & Time: September 18, 2019
  • Event Details: Agenda pdf | 221.82 KB

Oklahoma Listening Session

  • Location: CHK Central Boathouse, 732 Riversport Drive, Oklahoma City, OK 73129
  • Date & Time: October 22, 2019, 1:00-4:00 pm CT
  • Event Details: Agenda pdf | 76.76 KB