This afternoon, the House passed legislation to protect personal genetic information from discriminatory use by health insurers and employers. For decades, scientists have been identifying chromosomes within genes, allowing the ability to test specific genes that may trigger disease later in life. However, many Americans report that they forgo this testing because they fear losing their jobs or their health insurance.
In the 1970s, many African-Americans were denied jobs, educational opportunities, and insurance based on their carrier status for sickle cell anemia, despite the fact that a carrier lacked the two copies of a mutation necessary to get sick. In 1998, Lawrence Livermore Laboratories in Berkeley was found to have been performing tests for syphilis, pregnancy, and sickle cell on employees without their knowledge or consent for years. And in 2000, the Burlington Northern Santa Fe Railroad performed genetic tests on employees without their knowledge or consent.
The Genetic Information Nondiscrimination Act (GINA) passed today prohibits employers from using individuals' genetic information when making hiring, firing, job placement or promotion decisions. It also makes it illegal for group health plans and health insurers to deny coverage to healthy individuals or charge them higher premiums based solely on a genetic predisposition to a specific disease.
Chairman of the Education and Labor Committee George Miller on the passage of the bill stated: “With this vote, we are a big step closer to guaranteeing all Americans that their own personal genetic information will never be used to deny them a job, a promotion, or health insurance. Americans' private genetic information must be protected from discriminatory use by employers and health insurance companies.”
Rep. Louise Slaughter (D-NY), Chairwoman of the House Rules Committee, on GINA which she authored and first introduced twelve years ago:
| Rep. Slaughter: “This problem is no longer simply the work of science fiction writers…from a woman who was fired after a genetic test revealed her risk for a lung disorder …to a social worker, who despite outstanding performance reviews, was dismissed because of her family history of Huntington's disease… GINA will make these discriminatory practices illegal by prohibiting health insurers from denying coverage, or charging person higher premiums, to a healthy individual because of a genetic predisposition to develop a disease in the future.” |
From Rep. Louise Slaughter (D-NY) and Rep. Judy Biggert (R-IL):
House of Representatives Passes Genetic Non-Discrimination Bill Sponsored by Reps. Slaughter and Biggert
Bill Will Prohibit Improper Use of Genetic Information in Workforce and Insurance Decisions“I am extremely pleased to see this historic bill pass the House of Representatives with such overwhelming support,” said Rep. Slaughter. “For years, we've held up genetic research because people were afraid that their genetic information would be used against them. This legislation addresses those fears by prohibiting the improper use of genetic information by a person's employer or insurer.”
“GINA will do more than stamp out a new form of discrimination. It will also help our country to be a leader in a field of scientific research that holds as much promise as any other in history,” continued Slaughter. “It will allow us to realize the tremendous potential of genetic research without jeopardizing one of the most fundamental privacies that can be imagined. GINA will encourage Americans to seek out preventative health care and participate in clinical trials critical to finding cures for some of our most deadly genetic-based diseases.”
“We will never unlock the great promise of the Human Genome Project if Americans are too paranoid to get genetic testing,” said Rep. Biggert. “Without the protections offered by H.R. 493, these fears will persist, research at National Institutes of Health (NIH) will slow, and Americans will never realize the benefits and health care savings of gene-based medicines.”
The Genetic Information Non-discrimination Act makes it illegal for group health plans and health insurers to deny coverage to a healthy individual or charge him or her higher premiums based solely on a genetic predisposition to a specific disease. The legislation also bars employers from using individuals’ genetic information when making hiring, firing, job placement or promotion decisions.