GINA - Genetic Information Nondiscrimination Act

The House of Representatives recently passed the Genetic Information Nondiscrimination Act (GINA), and the bill is expected to pass the Senate and become law later in 2007, replacing a patchwork of state and federal regulations.

According to the Genetics & Public Policy Center,

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.