Non-discrimination act to become US law

Abstract

By a vote of 420 to three, the U S House of Representatives passed the Genetic Information Non-discrimination Act (GINA) on April 25. This act is expected to pass the Senate, and President Bush has indicated that he will sign it into law. According to a 2007 survey by the Genetics and Public Policy Cen ter (Washington DC, USA), most Americans support the use of genetic test ing for research and health care. How ever, 92% are also concerned that the results of a genetic screening test could be used in an adverse way, such as in the denial of health insurance or employment. “Americans understand the importance of genetics and genetic testing to health and medical research, but they are deeply concerned that a genetic test result could be used against them”, says Susannah Baruch (Genetics and Public Policy Center). “Our survey results strongly support what we have heard from doctors and researchers—that the fear of genetic discrimination aff ects people’s willingness to get genetic testing for their own benefi t or as part of research that benefi ts all of us.” GINA will make it illegal for health insurers to deny coverage to healthy people, or to charge higher rates, on the sole basis of genetic information. The act also prohibits an employer from using genetic information in making employment decisions. “This bill has been kicking around for 14 years, and it is long overdue”, says bioethicist Arthur Caplan (University of Pennsylvania, Philadelphia, PA, USA). “It is going to be impossible to see genomics work their way into personalised medicine without this legislation.” Because many of the genetic diseases have no treatment, screening will not be useful in this respect. Therefore, there is a greater risk of being penalised (ie, denied health insur ance) from being screened, than there is a benefi t, explains Caplan. “But the real problem is that without some basic universal healthcare insurance for all Americans, even this legislation won’t solve all the fears that people have about genetic diagnosis.”