Outlawing genetic discrimination

For more than a decade, policymakers in the US have considered - but not yet passed - legislation that would outlaw the misuse of genetic information by health insurers and employers. The need for such legislation is growing: more than 1000 genetic tests are now clinically available and with many more on the horizon, doctors and scientists are anticipating a day when genetic testing is a standard part of medical care and research. Soon, every one of us will be able to know how our own genetic makeup increases our risks for diseases such as cancer and heart disease. Nevertheless, doctors already are observing that individual patients who could benefit from genetic testing may forgo it out of concern that their information could be used against them later by employers or insurers. And scientists report that many potential research participants are reluctant to volunteer for clinical research that requires genetic testing, for fear of possible repercussions.

Imagine a young woman who suspects she is at increased risk of breast cancer having seen her mother, sister and aunt all battle the disease. Genetic tests for hereditary breast cancer have been available for many years, but many women have been reluctant to undergo testing - or to participate in clinical research that requires it. Their fears have lead countless women to forgo testing - and with it, potentially life-saving heightened surveillance or preventive care.

The Genetic Information Nondiscrimination Act ('GINA') would prohibit health insurers and employers from asking for test results, from requiring a person to take a genetic test, and from using genetic information in setting insurance rates or making employment decisions. GINA passed unanimously in the United States Senate in 2003 and again in 2005. But in the House of Representatives, the bill stagnated despite efforts by a diverse coalition of patient, research, business, and civil rights advocates to move it along. However, in 2007, with new House leadership in place, so far so good: on 25 April the bill, H.R. 493, passed the House of Representatives for the first time, with a resounding 420 - 3 vote. The full Senate is expected to consider the bill soon, and the President has promised to sign it.

So for a patient with a family history of breast cancer considering genetic testing for breast cancer predisposition, what will this new law mean? It means that she and her health care providers can make decisions about genetic testing in ways that maximize her health and allow her to consider all the options for early detection and treatment that are open to her. And they can do so without secretive maneuvers: in the past some patients have taken extraordinary measures in an effort to protect the privacy of their genetic information, sometimes paying out of pocket or using a fake name to keep the information private. A patient can be certain that a health insurer, whether in the individual or group market, will not be able to make her pay more - or deny her insurance all together - because of her genetic test result. And, she can be confident that her employer cannot base decisions about hiring, firing, advancement and promotion based on misguided fears about her future health and productivity.  

She can also feel confident volunteering to participate in a clinical trial that may contribute to finding better treatment and cures for breast cancer and other diseases as well. GINA will for the first time allow research participants to proceed knowing that it is against the law for health insurers or employers to use genetic information to discriminate against them.

In a recent survey of nearly 1200 Americans, the Johns Hopkins Genetics and Public Policy Center found that 93 per cent believed health insurers should not be permitted to use results from a predictive genetic test to deny or limit coverage or charge higher prices; three quarters believed there should be a law preventing insurers from doing so. Similarly, 93 per cent believed that employers should not be permitted to use such a test result to make hiring or promotion decisions, and more than three quarters believed there should be a law prohibiting these uses.  The message from the American public is clear - and it appears that finally, Congress and the White House are listening. We all stand to benefit.