EPIC Calls for Genetic Privacy Protections

EPIC submitted comments to the Presidential Commission for the Study of Bioethical Issues, urging the advisory panel to protect genetic privacy in large-scale human genome sequence data. The Commission requested comments pertaining to the "privacy of individuals, research subjects, patients, and their families" as the government moves closer to large-scale human genome sequencing. EPIC Advisory Board member, Professor Anita L. Allen serves as a Commissioner for the Presidential advisory panel. EPIC recommended that the Commission build upon genetic privacy and medical laws such as the Genetic Information Nondiscrimination Act("GINA") and the Health Insurance Portability and Accountability Privacy Rule to protect genetic data. EPIC also recommended that individuals should be given property rights over their genetic data.

Please see full comments below for more information.

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DISCLAIMER: Because of the generality of this update, the information provided herein may not be applicable in all situations and should not be acted upon without specific legal advice based on particular situations.

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