HomeAbout NHGRIAbout the Office of the DirectorReports and Workshop Summaries from OD Workshop on Privacy, Confidentiality and Identifiability in Genomic Research

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On October 3-4, 2006, the National Human Genome Research Institute (NHGRI) sponsored a workshop on Privacy, Confidentiality and Identifiability in Genomic Research in Bethesda, Md. The workshop, led by NHGRI Consultant in Health Research Policy William W. Lowrance and NHGRI Director Francis Collins, was asked to consider such issues as:

• The risks of matching, linking and probabilistic profiling for identifying individuals from genotype data.
• Technical options for de-identifying data.
• The implications regarding such laws and regulations as the Common Rule on Protection of Human Subjects and the HIPAA Privacy Rule.
• Truly open publication of genomic data as compared with controlled release.

Workshop Summary

Workshop Discussion Document

Workshop Participant List

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Last Reviewed: August 5, 2008