Privacy of genetic information: a review of the laws in the United States

Stud Health Technol Inform. 2001;84(Pt 2):1292-5.


This paper examines the privacy of genetic information and the laws in the United States designed to protect genetic privacy. While all 50 states have laws protecting the privacy of health information, there are many states that have additional laws that carve out additional protections specifically for genetic information. The majority of the individual states have enacted legislation to protect individuals from discrimination on the basis of genetic information, and most of this legislation also has provisions to protect the privacy of genetic information. On the Federal level, there has been no antidiscrimination or genetic privacy legislation. Secretary Donna Shalala of the Department of Health and Human Services has issued proposed regulations to protect the privacy of individually identifiable health information. These regulations encompass individually identifiable health information and do not make specific provisions for genetic information. The variety of laws regarding genetic privacy, some found in statutes to protect health information and some found in statutes to prevent genetic discrimination, presents challenges to those charged with administering and executing these laws.

MeSH terms

  • Confidentiality / legislation & jurisprudence*
  • Genetic Testing / legislation & jurisprudence*
  • Genotype*
  • Humans
  • Privacy / legislation & jurisprudence
  • State Government
  • United States