On April 17, 2019, NIH initiated a Tribal Consultation and an Urban Confer on provisions of a Draft Policy for Data Management and Sharing recognizing that there may be unique concerns for American Indian and Alaska Native (AI/AN) communities regarding broad data sharing, including circumstances in which broad data sharing may not be appropriate (i.e., particularly sensitive data or data restricted by certain Federal, Tribal, state, and local laws, regulations, etc.). The Tribal Consultation aimed to solicit input from Tribal Nations on responsible data management and sharing practices and strategies, along with the identification of any additional resources that may need to be developed to assist researchers working with AI/AN communities to successfully implement these practices. Input was collected during three HHS Regional Tribal Consultations, a webinar, and written feedback.
- Consultation themes and activities specifically directed towards the data management and sharing practices of NIH-funded and supported research included:
- Strengthen engagement built on trust between researchers and Tribal Nations.
- Train researchers to manage and share AI/AN data responsibly and respectfully.
- Ensure research practices are aligned with the laws, policies, and preferences of AI/AN community partners.
- NIH will continue to routinely seek to engage Tribal Nations in conversations around responsible data sharing in culturally sensitive ways as part of our commitment to responsible data sharing and in alignment with the goals outlined in the NIH Strategic Plan for Tribal Health Research.
- NIH is supportive of the recommendations received during Consultation and plans to address Tribal leaders’ feedback through policy language and supplemental guidance. NIH will work with Tribal Nations and AI/AN communities to develop additional resources and will continue outreach activities to further the conversation with Tribal Nations around data management and sharing.