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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.

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Privacy-Related Publications

 

In the News

Here's what's happening with eMerge:

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...

07
FEB

To All eRecordCounter Users, We have an upcoming scheduled maintenance window beginning Tuesday, February 21st through Sunday, February 26th. During this time, the eMERGE Record Counter application...

08
NOV

The 3rd International Workshop on Genome Privacy and Security (GenoPri'16) is a community effort for promoting genome privacy and security, co-sponsored by the eMERGE...

18
OCT

Safe travels to our eMERGE investigators as they head to Vancouver this week to participate in ASHG 2016. Click here to view a list of eMERGE-specific presentations and here for general eMERGE...