April 25, 2007 - The House of Representatives passed the Genetic Information Nondiscrimination Act (GINA) of 2007 on Wednesday, April 25. GINA is expected to pass the Senate and be signed into law in the coming months.
Despite widespread, longstanding agreement among American citizens and politicians that protection from genetic discrimination should be clear and consistent, individuals’ genetic information has, to this point, been protected only by a largely untested patchwork of state and federal regulations. Ninety-two percent of Americans are concerned that results of a genetic test that tells a patient whether he or she is at increased risk for a disease like cancer could be used in ways that are harmful to the person, and most believe that employers and health insurers should not have access to this information.
The threat of genetic discrimination has hindered both genetic research and clinical practice. Linking gene variants to health outcomes often requires studies involving large numbers of people, but scientists report that many potential subjects are deterred by the fear that their information could be used against them by employers or insurers. Thus research is impeded that would help to bring about the much-heralded era of personalized medicine. Meanwhile, individual patients who could benefit from genetic testing have sometimes foregone it out of concern over possible repercussions. When people opt not to be tested, they lose the opportunity to seek monitoring and preventive care to avoid conditions for which they are at higher risk.
The Senate unanimously passed versions of GINA in 2003 and 2005, but in both years the bill stalled in committee in the House. President Bush has indicated he will sign the bill into law.
More Information:
Find HR 493 (GINA) on Thomas
U.S. Public Opinion on Uses of Genetic Information and Genetic Discrimination
Issue brief: The impact of genetic discrimination
Summary of a recent hearing on GINA by the House Energy and Commerce Committee’s Subcommittee on Health
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