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Data Sharing Workshop for Behavioral and Social Studies That Collect Genetic Data

This workshop explored issues surrounding data sharing plans for NIA-sponsored behavioral and social research studies that collect human specimens (DNA and/or biologic data). Workshop participants considered the potential for deductive disclosure and risks to confidentiality and privacy resulting from the merging of biologic and genetic data with complex, deeply described phenotypes in social and behavioral research studies. The workshop presentations and discussions were intended to inform the development of NIA/BSR data sharing guidelines in this area.

A summary of this meeting is available upon request. Please contact BSR.