A Genetic Bill of Rights

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By Linda Austin   Genetic testing is the testing of a small sample of blood, other body fluid or tissue to determine if a person carries particular gene or protein markers which would indicate the possibility of developing a certain disease or a disorder such as PXE. According to the U.S. National Library of Medicine and the National Institutes of Health, about 900 different genetic tests currently exist. While the availability and number of genetic tests increase and can be beneficial for health and life decisions, people remain concerned that positive disease indicators resulting from genetic testing may negatively influence future or current employment and cause health insurance companies to either refuse coverage or charge higher rates. With the signing by then-President Bush in May 2008 of the Genetic Information Nondiscrimination Act (H.R. 493), the American people can rest easier knowing that the results of such tests are to be protected against invasion of privacy by employers or insurance companies.   In the later 1990’s, when testing for breast cancer genes became readily available, women were worried that their test results could be used against them. The completion in 2003 of the mapping of the human genome then pushed a genetic rights bill through the Senate, but it took until 2007 for the House to finally pass a modified bill. The Genetic Information Nondiscrimination Act (GINA) was passed by the Senate in 2008 and signed into law shortly after. Sections of the law relating to health insurers went into effect in May 2009, sections relating to employers took effect this November. No health insurer or employer can require genetic testing or use genetic testing results to make health generalizations or rate adjustments for any group of people. The law also allows people to participate in research studies without fear their genetic information could be used outside the studies. The law does not, however, encompass life insurance, disability insurance or long-term care insurance. The federal law is only a minimum standard for all states, but any state is free to enact stronger laws against genetic discrimination.   The bill and additional information is available online at http://www.govtrack.us/congress/bill.xpd?bill=h110-493