Skip to main content
eScholarship
Open Access Publications from the University of California
Refine Search

UC Comment Letters

UC Office of the President

UC Comments in Response to the NIH Request for Public Comments on DRAFT Supplemental Information to the NIH Policy for Data Management and Sharing: Protecting Privacy When Sharing Human Research Participant Data (NOT-OD-22-131)

Abstract

This comment letter responds to the National Institutes of Health’s draft supplemental guidance on protecting the privacy of human research participants when sharing data under the NIH Data Management and Sharing Policy. UC supports a flexible, principles-based framework but recommends greater recognition of consent waivers, clearer and more consistent standards for de-identification and controlled access, broader consideration of legal protections and data-use agreements, and continued NIH investment in field-specific data repositories.


Top