Information for American Indians and Alaska Natives

Learn more about how All of Us is working with tribes across the U.S. and what that means for participants.

All of Us seeks to partner with many different groups across the country—especially those that have been left out of research in the past. As part of those efforts, we met with tribal leaders at formal meetings called “consultations.” These meetings helped us learn more about tribal leaders’ and community members’ views so we can support research in a way that best protects and benefits participants and AI/AN communities.

In March 2021, we put out a report about what we heard from those discussions. This input helped us make plans for the program.

People who identify as American Indian and Alaska Native (AI/AN) include:

  • Members of federally-recognized tribes
  • Members of state-recognized tribes
  • Members of a tribe not recognized by either federal or state governments
  • Central and South American Indians
  • First Nations peoples (Canada)
  • People with AI/AN ancestry but no tribal affiliation

People may identify as AI/AN alone, or in combination with other races, too.

Here are some key things to know:

Security

Here are some key things to know:

  • We have not started sharing data from AI/AN participants with researchers.
  • We have not started processing samples from AI/AN participants. For now, blood, urine, and saliva samples from self-identified AI/AN participants are set aside at our biobank. This might mean a delay in getting your DNA results if you choose to give samples.
  • We will not begin sharing or processing AI/AN data or samples until after September 30, 2021. We want AI/AN participants to have time to review our report and, if they choose, talk to their tribal leaders about the program first.
  • If AI/AN participants choose to leave the program before September 30, 2021, their data and samples will never be shared with researchers.
  • If they choose to stay involved, their data will be unlocked for research and we may begin processing their samples. After September 30, participants can still withdraw at any time, and we will not use their data or samples in any future studies.

Our hold on AI/AN data and samples is temporary. We know some AI/AN people have already thought through their participation and are ready to share data and get information back. We want to give all AI/AN people a chance to learn more about our tribal consultation so they can consider how the consultation process might affect their decisions about participation in the program.

Highlights From the Tribal Consultation Report

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AI/AN individuals and communities may face unique harms and benefits. For example, some tribal leaders are concerned about how conclusions made about AI/AN participants might hurt tribal communities as a whole, or that research practices may not follow tribal cultural practices. It's also possible that discoveries that benefit members of other tribal communities may also end up directly benefiting other AI/AN participants. All of Us will work with AI/AN experts, tribal leaders and traditional medicine practitioners who can review proposed research projects and identify potential harms to AI/AN communities. AI/AN participants from Tribal Nations are encouraged to talk with their tribal leaders about potential risks and benefits of their participation.
Before we share any data with researchers, we remove information that can directly identify individuals, including names, addresses, and more. But even so, when members of small populations participate in research, it may be easier for these people to be re-identified. That also means that it may be easier to connect an individual with a certain community. Researchers who want access to All of Us data must agree they won’t try to re-identify participants.
If an AI/AN participant decides to withdraw from the program or passes away, we won’t do anything with their samples right away. Instead, we will wait until we are notified about how that person wanted us to dispose of their samples. Then we will implement a plan that honors their wishes.
All of Us respects that tribes are sovereign nations, with their own governments and laws. We will encourage research on topics that are important to tribes. We will create materials to educate researchers about tribal views. We will work to partner with tribal organizations that want to be part of the program. And we will never share the tribal affiliations of AI/AN participants or recruit on tribal lands unless a tribe agrees.
Many AI/AN people don’t live on tribal lands. We will work with urban AI/AN leaders when doing AI/AN recruitment efforts outside of tribal communities.
All of Us is committed to including AI/AN people among those who make decisions about the program. We will invite AI/AN researchers to use All of Us data. And we will continue to ask tribal leaders, tribal organizations, and experts in AI/AN research to give us advice.

These are only a few of the topics from our tribal consultation report. If you identify as AI/AN and wish to join All of Us, we ask that you:

Report

These are only a few of the topics from our tribal consultation report. If you identify as AI/AN and wish to join All of Us, we ask that you:

  • Read the report summary or the full report.
  • Consider speaking with your tribal leaders about participating in All of Us if you are a tribal member.
  • Contact us with questions. You can reach us at help@JoinAllofUs.org or (844) 842-2855.

We know that people have many different views about taking part in research. You get to choose what’s right for you. Everyone must weigh the risks and benefits for themselves, their families, and their communities. We respect your decision and welcome feedback.

READ THE REPORT SUMMARY