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Privacy of Genetic Information
The completion of a high-quality comprehensive sequence of the human genome is a landmark event. The genomic era is now a reality. There is increased public awareness of the positive impact of genetics research on human health. Along with these positive effects have come concerns about privacy of personal genetic information and how it will be used.
The Health Insurance Portability and Accountability Act of 1996 (HIPAA) [hhs.gov] required HHS to develop standards for protecting the privacy of individually identifiable health information from inappropriate use and disclosure. The resulting Privacy Rule [hhs.gov] came into effect on April 14, 2003. Within the Privacy Rule, genetic information is treated as all other "Protected Health Information." The Privacy Rule does not preempt more stringent state law, therefore, there are many state laws that prevail over the Privacy Rule.
Many states have enacted legislation to prohibit genetic discrimination by health insurers and/or employers. While some states have specific privacy laws to address genetic information, other states may add a privacy component to antidiscrimination legislation.
- Federal Policy Recommendations, including HIPPA
- Federal Legislation
- Search Legislative Database for State Legislation
- Congressional Hearings and Testimony
- Ethical, Legal and Social Implications Program Funded Workshops, Projects and Publications
For conferences, workshops, see: ELSI Program Activities
For full citations, see: Publications and Products
For further description of each author's project, see: ELSI Grant Abstracts
- Faden, Ruth R. "Confidentiality, privacy and insurance."
- Hoffman, Lance. "2nd Annual conference on computers, freedom, and privacy."
- Rothstein, Mark. "Genetic ties and the future of the family."
- Wachbroit, Robert. "Reassessing health, normality, and confidentiality.
Last Reviewed: October 2004
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