Genetics and health privacy in the USA 9/5/02. By the Public Health Genetics Unit To what extent does the US federal Health Insurance Portability and Accountability Act (HIPAA) protect genetic information?

The Health Privacy Project at Georgetown University in the US has published a report on the extent to which the US federal Health Insurance Portability and Accountability Act (HIPAA), passed in 1996 and in force since April 2001, protects genetic information.

The authors of the report point out that only organisations concerned with the processing of health information in relation to payment of health insurance claims are covered by the Act, and that other classes of people who may have access to genetic information (including family history information), for example employers, pharmaceutical companies, purveyors of genetic testing services via the internet, and many researchers, are not. Nor does the Act cover the actual tissues that are the source of DNA-based genetic information.

Just over half of the individual States in the US have enacted their own legislation to protect the privacy of health information – sometimes specifically including genetic information – and where such legislation offers a higher level of protection than the federal HIPAA, it "trumps" the federal legislation. However, the report's authors consider that additional national legislation is needed to close some of the gaps left by the HIPAA.

The report also contains a useful, lay-level summary of genetics and the uses of genetic testing.

Article courtesy of the Public Health Genetics Unit .