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It is critical to ensure that the collection and dissemination of genomic and phenotypic information is achieved in a manner that respects the privacy rights of the patients from which it is derived.  To achieve this goal, the eMERGE network is developing procedures (often implemented in working software) to embed privacy protection strategies in the data lifecycle. These procedures include the design of community advisory groups, patient consenting mechanisms, and de-identification methodologies that mitigate re-identification threats while maximizing the utility of the data shared for research purposes.

privacy graphic web

Privacy-related publications


In the News

Here's what's happening with eMerge:


Please find below a special note from the NHGRI Director, Eric Green. ******************************************************************** Dear NHGRI Grantee: In order to capitalize on the opportunities...


The Electronic Medical Records & Genomics (eMERGE) Network is thrilled to be represented by our investigators at the American Medical Informatics Association (AMIA) Annual Symposium, hosted November...


An upcoming scheduled maintenance window is starting Tuesday, September 5th and ending Wednesday, September 6th. During this time, the RD Discover, SD Discover, Subject Locator and Record Counter applications...


The NIH/NHGRI has published IGNITE II RFAs which are linked below for your convenience.

  • Implementing Genomics in Practice (IGNITE) II: Pragmatic Clinical Trials – Clinical Groups...