BREAKING:GINA signed today! {updated with press release from GA}

The rumor I hear is that there will be a small, quiet signing ceremony in the Oval Office. What I heard publicly is this, from the Genetic Alliance newsletter:


I will update if I find out any more….By the way, at that link there [was] is a great photo of Ted Kennedy and Francis Collins, Louise Slaughter, Judy Biggert and Robert Andrews after the “victorious vote”. I can’t find a public version of it right now or I would bring it over.


MAY 21, 2008

For More Information Contact:
Sharon Terry – or 202.966.5557 x201 Iris Maldonado – or 202.263.2580

President Bush Signs Landmark Genetic Nondiscrimination Information Act Into Law

Washington, D.C. – May 21, 2008 – The Coalition for Genetic Fairness ( commends President George W. Bush for signing into law today the first civil rights legislation of the new millennium, the Genetic Information Nondiscrimination Act (GINA). GINA is the first and only federal legislation that will provide protections against discrimination based on an individual’s genetic information in health insurance coverage and employment settings.

“This is a tremendous victory for every American not born with perfect genes – which means it’s a victory for every single one us,” said Representative Louise Slaughter (D-NY). “Since all of us are predisposed to at least a few genetic-based disorders, we are all potential victims of genetic discrimination.”

“Today marks the beginning of a new era in health care,” continued Slaughter. “Americans can finally take advantage of the tremendous potential of genetic research without the fear that their own genetic information will be used against them.”

Just a few weeks ago, GINA received overwhelming support in both the Senate, with a unanimous vote of approval, and the House of Representatives, where the legislation was passed by a landslide vote of 414-1.

”Individuals no longer have to worry about being discriminated against on the basis of their genetic information, and with this assurance, the promise of genetic testing and disease management and prevention can be realized more fully,” stated Sharon Terry, president of the Coalition and CEO of Genetic Alliance (“We applaud our champions on the Hill who have worked tirelessly to pass this important legislation. It is now our responsibility to make sure the public knows that these new protections are in place.”

The health insurance protections offered by GINA are expected to roll out 12 months after the bill is signed, whereas the employment protections will be fully realized in 18 months.

“Now that GINA has been approved and signed into federal law by the President, American health care consumers and employees will no longer have to fear the adverse effects of being tested to determine their risk status for genetic diseases,” said Joann Boughman, Ph.D., executive vice president of the American Society of Human Genetics ( and a member of the Coalition’s executive committee. “Once this legislation has taken effect, clinicians will be able to order genetic tests for patients and their families in a manner that ensures the full realization of the advantages of personalized medicine models, while easing patients’ concerns about the risk of genetic discrimination by insurance companies and employers based on this data.”

Specifically, the legislation protects against genetic discrimination by health insurers or employers by:

• Prohibiting group health plans and issuers offering coverage on the group or individual market from basing eligibility determinations or adjusting premiums or contributions on the basis of genetic information. They cannot request, require or purchase the results of genetic tests, or disclose genetic information.

• Prohibiting issuers of Medigap policies from adjusting pricing or conditioning eligibility on the basis of genetic information. They cannot request, require or purchase the results of genetic tests, or disclose genetic information.

• Prohibiting employers from firing, refusing to hire, or otherwise discriminating with respect to compensation, terms, conditions or privileges of employment. Employers may not request, require or purchase genetic information, and may not disclose genetic information. Similar provisions apply to employment agencies and labor organizations.

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, The American Society of Human Genetics, Brown University, Hadassah, National Society of Genetic Counselors, and the National Workrights Institute.
Coalition for Genetic Fairness • • 4301 Connecticut Ave. NW #404, Washington DC • 20008-2369 • Phone: 202.966.5557 • Fax: 202.966.8553

5 thoughts on “BREAKING:GINA signed today! {updated with press release from GA}

  1. DrPatrcik

    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:

    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.

  2. Mary

    I understand that this law isn’t everything since sliced bread. It took 13 years to get this far, with fairly simple legislation. There are plenty of other things we need, and they just can’t all be done at once.

    We need to have more people who care about science influencing policy in this country.

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