In November, 2018, the NIH announced revisions to its policy regarding data management procedures for GDS (Genomic Data Sharing). The revisions allow unrestricted access to GSR (Genomic Summary Results, previously referred to as ‘aggregate genomic data’) from most NIH-supported studies for health or research purposes. This includes dbGAP and other databases managed by NIH. The purpose of this change is to allow broader access to these databases in order to promote public benefit from the federal investment in genomics research.
While providing broader access, the NIH also acknowledges that it is possible that privacy risks related to broad access to GSR may be heightened for study populations from isolated geographic regions or with rare traits. For this reason, NIH has requested that investigators notify the NIH if databases with sensitive information should maintain controlled access. Please click the link below for instructions on how to submit this notice to NIH.
The deadline for notification is May 1, 2019. After that date, GSR may be provided through unrestricted access.
Please click here for complete information and instructions.
Please contact Duke ORA for assistance with signatures on Institutional Certifications, per the current process.