The AAMC on March 18 submitted comments (PDF) to the National Institutes of Health (NIH) in response to a request for information (RFI) to “establish harmonized and transparent policy requirements for protecting human participant research data.” The RFI contained both a Draft NIH Controlled-Access Data Policy as well as proposed revisions to the NIH Genomic Data Sharing Policy.
In its letter, the AAMC stressed its longstanding support (PDF) for “policies which facilitate meaningful sharing and re-use of the data resulting from NIH-funded research projects, while also agreeing that there are key privacy and security considerations necessary to responsibly and ethically share data acquired from human participants.” The comments go on to identify significant concerns with the breadth of the policy changes being proposed and the potential implementation challenges for NIH-funded institutions.
- Washington Highlights