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Open Access Publications from the University of California

UC Comments in Response to the NIH Request for Information: Developing Consent Language for Future Use of Data and Biospecimens (NOT-OD-21-131)

Abstract

This comment letter responds to the National Institutes of Health’s request for information on developing consent language for the future use and sharing of research data and biospecimens. UC recommends that NIH provide flexible guidance rather than standardized sample language, clarify how the proposal relates to broad consent requirements, avoid a default opt-out approach to future sharing, and address the varying federal, state, and local laws governing informed consent and research privacy.