The Association of American Universities (AAU), the Association of Public and Land-grant Universities (APLU), and the Council on Governmental Relations (COGR) collectively submitted feedback on the proposed update to the NIH Genomic Data Sharing Policy’s Access Model for Genomic Summary Results. These organizations support the NIH’s initiative to enhance access and facilitate responsible, broad sharing of aggregate genomic data, emphasizing the importance of a balanced approach that weighs risks and benefits. They agree with the introduction of a "rapid access" tier, which allows users faster access after affirming responsible use, and they generally believe risks like stigmatization or privacy breaches from summary results are minimal. Nonetheless, they advocate for giving data-submitting institutions the option to request controlled access for sensitive datasets via their existing certification and data sharing plans.
Additionally, the associations recommend that the implementation plan for datasets submitted before the new policy's effective date include a standardized process for institutions to notify NIH if their data should have access restrictions, avoiding the need for full re-certification. They also request clarification that new consent requirements will apply only to prospective data collections, not retroactively. The letter concludes with brief descriptions of each association, highlighting their roles as major representatives of research universities and their commitment to effective research policy and regulatory practices.
