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  • Washington Highlights

    AAMC Submits Comments to NIH on Genomic Data Sharing Policy


    Anurupa Dev, Director, Science Policy & Strategy
    Heather Pierce, Senior Director, Science Policy & Regulatory Counsel

    The AAMC submitted comments on Feb. 25 to the National Institutes of Health (NIH) in response to a request for information on proposed updates and long term considerations for the NIH Genomic Data Sharing (GDS) Policy.

    In its comments, the AAMC noted the importance of data sharing in accelerating scientific progress and agreed that polices governing genomic data sharing warrant special consideration, given the rapid advancement of the field and added risks when using human genomic data.

    The AAMC recommended that the NIH streamline its requirements for genomic data de-identification by adhering to the standards set forth in the Common Rule, and by clearly communicating risks for re-identification to research participants. The letter also discussed the potential benefits of data linkage, and how this might impact the informed consent process.  

    Finally, the AAMC emphasized the importance of harmonizing the GDS policy with other agency requirements, including the forthcoming NIH Data Management and Sharing Policy [refer to Washington Highlights, Oct. 30, 2020].