The National Partnership is proud to have helped achieve a tremendous victory for millions of Americans. After 13 years of advocacy, we are thrilled to report that on May 21, 2008, President Bush signed into law the Genetic Information Nondiscrimination Act of 2008. The new law establishes comprehensive federal standards to protect the privacy of genetic information and prohibit genetic discrimination in health insurance and in the workplace. These new standards will allow patients to take advantage of America's advancing medical technologies without fear of losing their jobs or insurance.
One of the most significant scientific accomplishments of this century, the mapping of the human genome, has held great promise to save lives and lower health care costs through early detection and treatment of such life-threatening diseases as cancer, diabetes, and Alzheimer's disease. However, fears that health insurers and employers will use an individual's genetic makeup to deny them jobs or insurance coverage have kept many people from benefiting from this emerging technology. And until now, the federal and state laws provided only a patchwork of protections that do not fully assure patients that their genetic information will be secure.
The National Partnership has long been concerned about the issue of genetic discrimination. There are now genetic tests for more than 500 disorders, and many of the most widely available tests are for diseases and conditions that primarily affect women. The National Partnership founded the Coalition for Genetic Fairness, an alliance of civil rights, health care, and patient groups. On behalf of this coalition, the National Partnership released Faces of Genetic Discrimination: How Genetic Discrimination Affects Real People in 2004. It was the stories of countless individuals such as these that led Congress and the President to finally take action to end this insidious discrimination. Now that the law has been passed, the National Partnership will be working hard to ensure it is implemented quickly and fairly.
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