To advance efforts under its new Data Management and Sharing Policy (DMS Policy)—which goes into effect on January 25, 2023—NIH issued two Guide notices on Supplemental Information to the NIH Policy for Data Management and Sharing to help researchers address privacy considerations when sharing human research participant data.
Keep in mind that this information is not intended to provide a guide for complying with regulatory requirements nor is it establishing binding rules for NIH awardees. Instead, it provides a set of principles, best practices, and points to consider for creating a robust framework for protecting the privacy of research participants when sharing data.
We briefly describe the Supplemental Information here but encourage you to read the Guide notices for complete details.
Responsible Management and Sharing of American Indian/Alaska Native Participant Data
Describes considerations and best practices for the responsible and respectful management and sharing of American Indian/Alaska Native (AI/AN) participant data under the DMS Policy. This Supplemental Information was developed in response to Tribal Nations’ input received through Tribal Consultation and public comments from AI/AN organizations and community members, researchers, institutions, data providers and users, research participants, infrastructure developers, and others to further promote culturally respectful and effective research partnerships.
Direct inquiries to the NIH Office of Science Policy at SciencePolicy@od.nih.gov.
Protecting Privacy When Sharing Human Research Participant Data
Assists researchers in responsible data sharing by establishing 1) operational principles for protecting participants’ privacy when sharing scientific data, 2) best practices for implementing these principles, and 3) points to consider for choosing whether to designate scientific data for controlled access.
Send your questions to NIH Data Management and Sharing Policy at sharing@nih.gov.
Additional Information
Go to NIH’s Data Management and Sharing Policy website for information on Planning and Budgeting for Data Management & Sharing, Data Management, and Sharing Scientific Data.