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 Act Privacy Rule to protect genetic data. EPIC also recommended that individuals should be given property rights over their genetic data. For more information, see EPIC: Genetic Privacy and EPIC: Medical Record Privacy.


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