NIH To Enhance Tribal Engagement Efforts
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NIH will expand and strengthen commitments to respectfully engage American Indian and Alaska Native (AI/AN) people and support their inclusion in the All of Us Research Program, a landmark health research effort that aims to find more precise ways to prevent and treat disease.
In response to tribal leader input gathered from an extensive consultation process, All of Us will initiate specialized education efforts for researchers, take steps to ensure the perspectives and needs of AI/AN communities are integrated into the program and support ongoing engagement activities with Tribal Nations to pave the way for expanded collaborations.
All of Us, which seeks to build a 1-million participant cohort nationwide, aims to engage communities that have been left out of past research.
“We have a real opportunity to help address underrepresentation in research and uncover factors that contribute to health disparities,” said All of Us chief operations officer Dr. Stephanie Devaney.
There are 574 federally recognized tribes within the U.S., each with their own governments and laws. All of Us leaders reaffirmed baseline commitments to Tribal Nations, including rules to never recruit on tribal lands or disclose participants’ tribal affiliations without a tribe’s consent. Further, the program committed to continue holding back the data and samples of self-identified AI/AN participants to allow for tribal consultations and the option to withdraw before any AI/AN information is ever shared for research.
“We’re committed to a robust consent process and encouraging all members of tribal communities to speak with tribal leaders,” said Michael Hahn, All of Us tribal engagement lead. “We hope this consultation is a signal to tribal leaders that we’re listening.”