American Indian/Alaska Native (AI/AN) communities have been, and continue to be, under-represented in biomedical research. We also recognize that there are sensitivities and concerns about transparency in how NIH manages, shares, and uses information collected from AI/AN individuals and communities. In acknowledgement of Tribal sovereignty, NIH recently engaged in a Tribal Consultation to inform the Agency’s proposal for a NIH-wide policy for data management and sharing. The purpose of the consultation was to better understand the concerns of Tribal Nations and to develop strategies to best address those concerns. This Consultation, initiated in April 2019, was conducted in accordance with the HHS Tribal Consultation Policy and the NIH Guidance on the Implementation of the HHS Tribal Consultation Policy and included a series of in-person Consultations with Tribal Leaders. .
Today, NIH is releasing a report containing the findings from its Tribal Consultation and our proposed implementation actions. NIH supports the recommendations we have received from Tribal leaders and, as such, we intend to emphasize the role of Tribal sovereignty in any future data management and sharing policy. To supplement the policy, NIH also intends to develop and disseminate guidance that promotes research partnerships between researchers, Tribal Nations, and urban AI/AN communities and helps researchers respectfully manage and share data.
We want to make it very clear that this Tribal Consultation does not represent an end to the journey of engagement with Tribal communities, but rather a point along the way. We expect that there will be a considerable time (~2 years) between release of a final Data Management and Sharing Policy and the date it becomes effective. NIH plans to use this time to continue to engage with Tribal Nations for continued conversations and development of resources related to responsible data management and sharing. At the end of the day, partnership with AI/AN communities must be built on a foundation of mutual trust and respect. We are deeply appreciative to the Tribal Nations for their contributions to this Consultation and look forward to future opportunities for engagement.
Posted by Dr. Carrie D. Wolinetz, September 24, 2020
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