U.S. Congress Passes Genetic Information Nondiscrimination Act

On May 1, the U.S. House of Representatives 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 Genetics Society of America applauds the members of Congress for acting on this important bill. A joint effort by the American Society of Human Genetics, the Coalition for Genetic Fairness, the Genetic Alliance and other organizations in the genetics community has resulted in 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.”

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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One thought on “U.S. Congress Passes Genetic Information Nondiscrimination Act”

  1. These regulations are a good idea, but there still seems to be some holes in the new laws. For instance, health information is not the only thing you can get from your DNA:

    http://dnatestingguides.com/2008/05/what-is-dna-testing/

    For example with the wholesale collection of DNA the government, or any company that so wished, could compile a DNA fingerprint database or trace your ancestry.
    It’s not clear how the new regulations would apply to this. Perhaps the best way to stop companies/governments abusing genetic information, is to not only protect the information, but not let them have it in the first place.

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