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New US law will protect personal genetic information

23 November 2009
Appeared in BioNews 535
The US Genetic Information Non-Discrimination Act 2008 (GINA) has come into force introducing new protection against discrimination on the basis of genetic predisposition to disease. The act, signed into law in March of last year by President Bush, outlaws the usage of 'genetic information' to discriminate in the provision of health insurance and prohibits the usage of such information in the making of employment-related decisions such as hiring, firing or promoting.

The act, which took effect for the majority of US businesses last week, was described by the late Senator Ted Kennedy as the 'first major new civil rights bill of the new century' and is the first substantial piece of anti-discrimination law passed in the US since the Americans with Disabilities Act of 1991. The new bill extends the protection contained in that earlier bill by extending coverage from discrimination from those with current conditions to those with a predisposition to develop such a condition in the future.

The wording of the act covers not just information produced by scientific genetic testing but also information collected for the purposes of interpreting genetic risk factors. This means that health insurance companies may no longer take information on family histories as part of their application and screening process. Genetic background may not be taken into account either in determining eligibility or in calculating premiums and deductibles.

Similarly, employers may not utilise genetic information in any employment-related decisions and, in addition to making it illegal for employers to seek such information, the act also prevents them from using any information they come by indirectly (the so-called 'water-cooler exception') in the determination of any of the terms or privileges of the affected individual's employment.
Law keeps genetics out of personnel matters
Illinois State Journal Register |  19 November 2009
Law Seeks to Ban Misuse of Genetic Testing
The New York Times |  15 November 2009
No Gattaca Here: Genetic Anti-Discrimination Law Goes Into Effect
Discover Magazine |  16 November 2009
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