U.S. Congress passes genetic nondiscrimination act

May 1 2008

The U.S. House of Representatives passed the Genetic Information Nondiscrimination Act (GINA) today by a vote of 414-1, building on the momentum of last week's unanimous Senate vote.

The Coalition for Genetic Fairness (www.geneticfairness.org), which has worked for 13 years toward the passage of legislation to eliminate the misuse of genetic information, today applauded the members of Congress for acting on this important bill.

"At long last, everyone with DNA can celebrate the passage of GINA in both chambers of Congress during the same session," said Sharon Terry, President of the Coalition and CEO of Genetic Alliance (www.geneticalliance.org). "We are all so grateful to our champions in the House for their perseverance and dedication. We now look towards the signing of GINA into law."

This legislation will be the first to prohibit employers and health insurers from discriminating against individuals on the basis of their genetic information.

"GINA will be the first civil rights act passed by the Congress in almost 20 years," said Jeremy Gruber, Legal Director for the National Workrights Institute. "This marks the first time in the history of our country that legislation has been passed to protect against genetic discrimination before it becomes deeply ingrained in the very fabric of our society."

"With the long-awaited federal passage of GINA, researchers and clinicians can now actively encourage Americans to participate in clinical trials without the fear of genetic discrimination," said Joann Boughman, Ph.D., executive vice president of the American Society of Human Genetics (ASHG) (www.ashg.org). "Furthermore, under the federal protection provided by GINA, health care practitioners will be able to recommend appropriate genetic testing and screening procedures unencumbered by the fear of discrimination based upon the results."

On April 24, the Senate passed an identical version of the bill (S. 358) by a vote of 95-0. The White House has signaled its willingness to sign GINA into law and a signing ceremony is expected shortly.

The Coalition for Genetic Fairness is an alliance of advocacy organizations, health professionals, and industry leaders working to educate Congressional policymakers about the importance of legal protections for genetic information and ensure passage of meaningful genetic information nondiscrimination legislation.

The Coalition for Genetic Fairness is led by: Genetic Alliance, Affymetrix, American Academy of Pediatrics, American Society of Human Genetics (www.ashg.org), Brown University, Hadassah, National Society of Genetic Counselors, and the National Workrights Institute.