Genomic Data Sharing Policies Must Protect Patient Privacy, Minimize Risk

By Michael Saito (Epic), Chair & Nam Nguyen, (Allscripts) Vice Chair, EHRA Privacy & Security Workgroup

The National Institutes of Health’s (NIH) ongoing objective of sharing research data sets to facilitate additional study is something EHRA member companies wholly support – as long as it protects patient privacy, ensures patients can provide informed and meaningful consent for use of their data, and minimizes the risk that patients’ genomic and other health data can be re-identified or misused. 

To that end, we took advantage of the NIH’s recent Request for Information (RFI) on the proposed updates to and long-term considerations for its Genomic Data Sharing (GDS) Policy to provide feedback in the key areas of de-identification, potentially identifiable information, and data linkages.

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