Tribal Self-Governance Virtual Conference: September 14 - 16, 2021

2019- TSGAC Letter: Comments on Tribal Engagement with the NIH All of Us Research Program

TSGAC outlined a number of concerns, including:

  • Lack of respect for Tribal data sovereignty. Data sovereignty involves a Tribe’s right to govern the collection, ownership, and application of their own data. Because the parameters of All of Us are broad and ambiguous, Tribes feel unsafe and unwilling to partake in the research.
  • Lack of cultural sensitivity training and failure to adhere to data ethics. Under the All of Us program rules, any researcher would have access to data that is shared by volunteers, on the condition that the researcher completes an ethics training, signs a data use agreement, and posts on the NIH website the parameters of their research project.
  • Lack of clarity in the consultation process. Tribes are concerned that NIH is conflating Tribal consultation sessions with listening sessions. Additionally, Tribes have reported that the agency has attempted to hold consultation sessions for three different initiatives at once: the All of Us program, the Draft Data Sharing and Management Policy, and the Intellectual Property Policy.
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File Type: pdf
Categories: Advisory Committee Correspondence
Tags: TSGAC

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