05/21/2007 - 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.
Read the full op-ed Outlawing Genetic Discrimination on the BioNews Web site.
Pew is no longer active in this line of work, but for more information, visit the Genetics & Public Policy Center Web site or visit the Genetics and Public Policy Centeron PewHealth.org.