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Privacy

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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:

31
AUG

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...

25
JUL

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...

22
JUN

CMS announced last week it will award up to $30 million in grant funding to clinical specialty societies, clinical professional organizations and independent research organizations to develop quality measures...

10
FEB

eMERGE is excited to share the results of the national multi-site survey it conducted to investigate public attitudes towards consent and data sharing in biobank research recently publish in AJHG.  For...