KENNEDY, ENZI, SNOWE CELEBRATE PASSAGE OF GENETIC INFORMATION NONDISCRIMINATION ACT

WASHINGTON, DC— Today, Senators Edward M. Kennedy, Chairman of the Health,Education, Labor and Pensions (HELP) Committee, Mike Enzi, Ranking Member of the HELPCommittee, Olympia Snowe and released the following statements following the passage of theGenetic Information Nondiscrimination Act (GINA). This legislation will prohibit genetic discrimination by health insurers and employers. The houseis expected to take up identical language in the very near future. Chairman Kennedy said, “This bill opens a new frontier in medicine in which we read thegenetic make up of patients to stop diseases before they even happen. This legislation opens todoor to modern medical progress for millions and millions of Americans. It means that peoplewhose genetic profiles put them at risk of cancer and other serious conditions can get tested andseek treatment without fear of losing their privacy, their jobs and their health insurance. It's thefirst civil rights bill of the new century of the life sciences. With its passage, we take a quantumleap forward in preserving the value of new genetic technology and protecting the basic rights ofevery American.” Senator Enzi said, “This bill will help fulfill the promise of genetic research to save lives andreduce health care costs, by establishing basic protections that encourage individuals to takeadvantage of genetic screening, counseling, testing, and new therapies, without fearing that thisinformation will be misused or abused. It protects both employees and employers by setting astandard of conduct that is easy to understand and easy to follow. We are far better off settinguniform, consistent rules of the road clearly and up front, rather than allowing them to be setpiecemeal through litigation.” “Like race and gender bias, genetic discrimination is based on the unchangeable – yet it alsorequires a deliberate effort to obtain gene data in order to discriminate,” said Senator Snowe.“The passage of GINA today represents the culmination of an effort that began more than tenyears ago to put in place landmark protections to safeguard Americans against geneticdiscrimination.” A summary of the legislation is below. THE GENETIC INFORMATION NONDISCRIMINATION ACT Scientists have now completed the historic task of deciphering the entire DNA sequence of thehuman genetic code. This new knowledge is already allowing doctors to develop better ways todiagnose, prevent or treat some of the most feared diseases known to humanity. For geneticresearch to fulfill its promise to improve health, patients must be able to receive its benefits freefrom the fear that genetic information will be used as a basis for discrimination. The bipartisan Genetic Information Nondiscrimination Act addresses these legitimate fears. Thislegislation will establish strong protections against discrimination based on genetic informationin health insurance and employment. Support for the bill has come from a wide range oforganizations representing patients, medical professionals, families and employees. We shouldgive all Americans the comprehensive protections against genetic discrimination in healthinsurance and employment they deserve by enacting this important legislation. With regard to health insurance discrimination, the Act will:• PROHIBIT enrollment restriction and premium adjustment on the basis of geneticinformation or genetic services;• PREVENT health plans and insurers from requesting or requiring that an individual takea genetic test; and• COVER all health insurance programs, including those under ERISA, state regulatedplans, and the individual market.With regard to employment discrimination, the Act will:• PROHIBIT discrimination on the basis of genetic information in hiring, compensation,and other personnel processes;• PROHIBIT the collection of genetic information, and allow genetic testing only in verylimited circumstances, such as monitoring the adverse effects of hazardous workplaceexposures;• REQUIRE genetic information possessed by employers to be confidentially maintainedand disclosed only to the employee or under other tightly controlled circumstances. ###