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U.S. Congress Passes Genetic Information Nondiscrimination Act (GINA)

House Approval Brings Historic Bill One Step Closer to Signing


ASHG's Letter of Support for GINA


The U.S. House of Representatives has passed the Genetic Information Nondiscrimination Act (GINA) by a vote of 414-1, building on the momentum of last week’s unanimous Senate vote to approve this legislation.

The American Society of Human Genetics applauds the members of Congress for acting on this important bill. ASHG has worked closely with the Coalition for Genetic Fairness, Genetic Alliance and other organizations in the genetics community to support the passage of this legislation, which aims to protect the privacy of Americans' personal genetic information and prevent it from being misused by health insurance companies and employers to discriminate against individuals based on their genetic makeup.

Once the bill has been officially signed into law by President Bush, this legislation will be the first of its kind to prohibit employers and health insurers from discriminating against individuals on the basis of their personal genetic information.

“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 ASHG. “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.”

“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 Genetic Alliance and President of the Coalition for Genetic Fairness. “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.”

The ASHG Board of Directors and staff would like to take this opportunity to extend our sincere gratitude to all of the ASHG members who have devoted their time and energy to help support the passage of GINA. We are proud and pleased that so many members of the ASHG community participated in this effort. Your individual actions to support the passage of GINA – whether large or small – have had a major collective impact on U.S. policymakers that directly contributed to our success in (finally!) getting this bill signed into law.

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.



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