The National Institutes of Health (NIH) has released two new documents providing supplemental information to the NIH Policy for Data Management and Sharing (DMS). They are intended to help the research community prepare for the DMS effective date of January 25, 2023.
Protecting Privacy When Sharing Human Research Participant Data
This document provides information for creating a framework to protect the privacy of research participants when sharing data. Specifically, it details:
- An Overview of Public Comments
- Operational Principles for Protecting Participant Privacy When Sharing Scientific Data
- Best Practices for Protecting Participant Privacy When Sharing Scientific Data
- Points to Consider for Choosing Whether to Designate Scientific Data for Controlled Access
Responsible Management and Sharing of American Indian/Alaska Native Participant Data
This document provides information for creating a framework to protect the privacy of research participants when sharing data. Specifically, it details:
This document details the discussion on public comments and describes best practices for the responsible and respectful management and sharing of AI/AN participant data under the DMS Policy, including proactive engagement, the informed consent process, and more. It also details the following considerations for researchers working with tribal nations:
- Tribal sovereignty
- Tribal research laws, regulations, policies, preferences, and processes
- Historical awareness
- Health disparities
