Noting the rapid advances in the use of genetic data, the report of the Presidential Commission for the Study of Bioethical Issues recommended "a consistent floor of privacy protections covering whole genome sequence data regardless of how they were obtained. These policies should protect individual privacy by prohibiting unauthorized whole genome sequencing without the consent of the individual from whom the sample came." The Commission further said "Only in exceptional circumstances should entities such as law enforcement or defense and security have access to biospecimens or whole genome sequence data for non health-related purposes without consent." The Presidential Commission offered additional recommendations on "Ethical Principles," "Policy and Governance," and "Analysis and Recommendations." Earlier this year, EPIC provided comments to the Commission, and proposed new safeguards for genetic data and limit law enforcement access. EPIC also recommended that the Commission build upon existing genetic privacy and medical laws to enhance individual control over their genetic information. For more information, see EPIC: Genetic Privacy and EPIC: Medical Record Privacy.
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Privacy Law Sourcebook (2016)