FASEB Comments on NIH Proposed Changes to Genomic Data Sharing Policy

By | October 5, 2017

FASEB submitted comments this week in support of the National Institutes of Health (NIH) proposed changes to the Genomic Data Sharing Policy (NOT-OD-17-110). The proposal would increase access to summary genomic statistics in the Database for Genotypes and Phenotypes (dbGaP) and other NIH databases.

Access would be contingent on users reviewing informational materials on the ethical use of these data products and affirming their intention of responsible use. Summary statistics from sensitive studies – where risks to participants and communities may outweigh the benefits of expanded access – would remain in the closed access system. This approach is similar to the one suggested by FASEB last April in response to a separate request for information.