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Congress is on the verge of breaking a 12-year impasse over legislation that would ban the use of genetic information by employers and health insurers. On April 25, 2007, the Genetic Information Nondiscrimination Act (GINA) of 2007 was passed in the U.S. House of Representatives by a vote of 420-3. The Senate has yet to vote, but President Bush has endorsed the bill.
The specter of genetic discrimination has haunted Americans since the beginnings of genetic testing more than 30 years ago, but the launch of the Human Genome Project in 1990 and the subsequent advances in testing have given those fears a human face.
Take Rebecca Fisher, a former medical librarian living in Oakton, Va., who was diagnosed with aggressive breast cancer at 31. Because the disease runs in her family, Fisher pressed her daughter Katie to get tested before leaving for college. The test showed that Katie has the breast cancer gene. “After the doctors explained everything health-wise,” Fisher says, “they summed up by saying, ‘Don't ever be without a group insurance plan.’ And that was a stunning realization.”
Proponents of GINA say that without legal protections, patients are less likely to get tests that could benefit their health and to participate in research that can lead to better treatments. Fear of genetic discrimination could impact research on many neurological disorders, such as Alzheimer's disease, Parkinson's disease, stroke, and Huntington's disease.
“We can't look [potential study participants] in the eye and tell them their fears are unwarranted until we have effective federal legislation to prevent that,” says Francis Collins, M.D., Ph.D, who directs the National Human Genome Research Institute.
For more information on the Genetic Information Nondiscrimination Act of 2007, go to genome.gov/24519851 or visit the Web site of the Library of Congress at thomas.loc.gov .