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.

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.
To accomplish this, PROMISE will identify a group of patients with specific inherited genetic factors (i.e. inherited homologous recombination deficiency pathogenic variants) using a mouth swab DNA test. PROMISE will access each patient’s medical information via their physician every six months. PROMISE will also survey participating patients every six months about their treatment experience. This collective information will provide new insights that will help physicians and patients better understand germline genetic testing results. It will also create a new mechanism to communicate with a key group of prostate cancer patients on an ongoing basis to help connect them with new trials and treatments as germline genetic biomarker driven clinical trials are opened and approved for prostate cancer.
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