The US Senate has unanimously passed a bill banning discrimination against people on the grounds of their genetic make-up. The House of Representatives is expected to pass the bill, which is called the Genetic Information Nondiscrimination Act (GINA) quickly, and President George W Bush has indicated he will sign it into law.
Genetic tests might alert people to inherited health problems and allow them to take preventive action, but there has been widespread fear that test results could lead to discrimination in employment and insurance coverage.
The bill forbids health insurance companies to use genetic information, including family histories, to deny insurance coverage, or to set higher rates for healthy people with a genetic predisposition to a disease. However, insurers can continue to make decisions about coverage and rates for people who already have the disease.
The bill also forbids employers, unions, and employment agencies to use genetic information in making decisions about hiring, paying, training, firing, promoting, or making job assignments.
The New York Times reported that the law was expected to be most helpful to people applying for individual insurance policies because federal law already bars group health insurance plans from discriminating against a person on the basis of genetic information. (New York Times 23 April; www.nytimes.com/2008/04/23/business/23gene.html)
The genetic discrimination bill was first introduced in the House of Representatives 13 years ago by Louise Slaughter, a New York State Democrat who has degrees in microbiology and public health. In the Senate it was sponsored by Olympia Snowe, a Maine Republican. Versions of the bill were passed several times by both the House and the Senate, but never have they been passed by both houses of Congress at the same time to be sent to the president for signature (as required by the Constitution).
The current bill was held up in the Senate by Dr Tom Coburn, an Oklahoma Republican, who expressed concern that the bill would allow employees to file civil rights lawsuits against their employers if they had problems with medical insurance coverage. The bill was changed to set a “firewall” between the section relating to employers and insurance firms.
Genetic discrimination has become more likely with the growth in genetic tests, which are often advertised directly to the public. Senator Snowe told the Washington Post that more than 1100 genetic tests were available but they were “absolutely useless” if fear of discrimination discouraged people from taking them (24 April; www.washingtonpost.com/wp-dyn/content/article/2008/04/24/AR2008042401468.html).
The American College of Medical Genetics said it was important that a healthcare professional be involved in ordering a genetic test and helping to interpret it (www.acmg.net; http://tinyurl.com/6x7scr).