Genetic Information Nondiscrimination Act
On May 1, 2008, the House passed Senate amendments to the Genetic Information Nondiscrimination Act, H.R. 493. On May 21, 2008, the President signed this landmark bill into law. The legislation will prohibit health insurance companies and employers from discriminating against people on the basis of genetic test results. By prohibiting the improper use of genetic information, this bill encourages Americans to undergo testing necessary for early treatment and prevention of genetic-based diseases.
Read Speaker Pelosi's statement on the President signing the Genetic Information Nondiscrimination Act into law>>
Following is an overview of highlights of the final bill:
The bill prohibits use of genetic tests to discriminate by insurers. The bill prohibits group health plans and health insurers from canceling, denying, refusing to renew, or changing the terms or premiums of coverage based solely on an individual’s genetic predisposition to developing a disease in the future.
The bill prohibits use of genetic tests to discriminate by employers. The bill bars employers from using individuals’ genetic information when making hiring, firing, promotion and other employment-related decisions.
The bill also generally prohibits requiring genetic tests. The bill generally prohibits health insurers and employers from requiring genetic tests.
The Senate amendments make only relatively minor changes and clarifications. The Senate changes are relatively minor. For example, the amendments clarify that employers are not liable for health plan violations under civil rights law unless the employer has separately violated a provision of the bill’s title governing employers. The amendments also create a narrow exemption to the ban on requiring genetic tests to permit forensic laboratories that meet certain standards to collect their own employees’ genetic information if necessary to prevent contamination of DNA samples.
By outlawing discrimination, the bill allows Americans to take advantage of genetic testing. One of the most significant scientific accomplishments in history is the sequencing of the human genetic code – a breakthrough that is already transforming the battle against a broad range of medical conditions. As a result, scientists have identified genetic markers for a variety of chronic health conditions, thereby increasing the potential for early treatment and prevention. The genetic testing that is encouraged by this bill can improve individuals’ lives by providing information on how to avoid future health problems and cope more effectively with conditions and associated costs.
By outlawing discrimination, the bill will help launch an era of personalized medicine. We are entering into an era of personalized medicine, where each individual’s health care is shaped according to their genetic make-up. However, up until now, patients have feared the misuse by employers and insurers of the results from genetic tests, so they have often declined to be tested. Enactment of this bill will remove this concern and ensure that patients can receive the best possible care without fear and will encourage the growth of personalized medicine.
By outlawing discrimination, the bill also opens the door to more life-saving genetic research. Fear of discrimination has caused a large number of people to opt out of clinical trials for genetic research. This lack of participation in research has had a negative impact on researchers, clinicians, and industry, slowing the research and development process for targeted drugs and treatments. This bill will allow us to realize the tremendous life-saving and life-altering potential of genetic research. The bill’s important protections will enable the scientific and medical communities to make the critical medical breakthroughs of the 21st century.
Finally, this bill is vitally necessary – because there is currently no strong federal protection against genetic information discrimination. Current federal and state laws provide only a patchwork of protections to prevent employers and insurers from denying health coverage or job opportunities on the basis of genetic information. This legislation will clarify how genetic information must be protected in both insurance and employment settings.