The NIH provides a supplement to the data sharing policy that elaborates on considerations and best practices for the responsible management and sharing of American Indian/Alaskan Native participant data. The full supplement is linked below. Here, we highlight recommended leading practices from the NIH website.
Understand
Understand Tribal sovereignty and laws, regulations, policies, and preferences. If working with multiple Tribes, researchers should engage with each Tribe to understand their expectations before conducting research.
Engage early with Tribes when developing a data management and sharing plan, before research begins, and continue throughout research. This is an important step toward building trust, facilitating mutually beneficial and equitable partnerships, and developing a culturally appropriate Data Management and Sharing (DMS) Plan.
Establish mutually beneficial partnerships. While the goals of a research project may be well documented, it is also important for researchers to understand the motivations and expectations of research participants/communities.
Agree on who will manage data (e.g., Tribe, researcher, trusted 3rd party). Research agreements should describe planned data management and sharing practices, including when data sharing limitations are appropriate, to ensure mutual agreement about data management and sharing that aligns with AI/AN Tribes’ preferences.
Consider additional protections, as necessary. The DMS Policy recognizes that other factors (e.g., ethical, legal, and technical) may shape permissibility of data sharing, and these factors should be described in the Plans. In addition, to mitigate the potential for group harm to AI/AN Tribes, both individual and community data protections (e.g., deidentification of Tribal affiliation or other group identifiers and controlled access review) should be considered.
Information and resources for addressing data ethics in biomedical research are available from multiple research support services.