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Urgent Action Needed: Senate to Vote on Genetic Information Nondiscrimination Legislation
The Senate is expected to soon vote on the Genetic Information Nondiscrimination Act (GINA) (S. 358). Please join ASH's advocacy efforts by contacting your Senators to support GINA, which prohibits health insurers from using individuals' genetic information to deny coverage or determine rates or premiums. In addition, the bill would bar employers from using individuals' genetic information when making hiring, firing, job placement, or promotion decisions. The House of Representatives passed its version of the bill (H.R. 493) in May 2007 and similar legislation has also passed the Senate in the last several Congresses. President Bush has indicated his support for legislation to protect genetic information privacy, so there is a real opportunity to enact legislation this year . If you have questions, or need more information, please contact ASH Research Advocacy Manager Tracy Roades at troades@hematology.org or 202-776-0544.
Dear [ Decision Maker ] , Please support the Genetic Information Nondiscrimination Act (S. 358) when it comes to the floor for a vote. As a hematologist, this legislation is important to me because it would relieve my patients' fear of genetic information discrimination and would prohibit such discrimination in employment and health insurance decisions. With a detailed draft of the human genome completed, the promise of genetic testing is tempered by concern about the impact of this information on health insurance and employment. Current federal and state regulations offer little or no protections for individuals who are investigating their genetic makeup. This legislation would establish clear guidance for health insurers, employers, and consumers about the use and disclosure of genetic information. New federal guidelines are needed that prohibit health insurers, employers, and other entities from disclosing an individual's genetic information for any purpose or using this information to determine insurance coverage, premium rates, employment eligibility, or compensation. Total confidentiality and privacy for genetic information is required to encourage patients to avail themselves of genetic screening, counseling, and testing. From a purely scientific perspective, to fully develop genetic science as a modern medical tool to fight disease, new privacy regulations are needed that protect an individuals' genetic information. Again, I would greatly appreciate your support of the Genetic Information Nondiscrimination Act (S. 358). Please contact me if I can provide additional information to you.
Sincerely, |
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| Background Information |
The Genetic Information Nondiscrimination Act (S. 358/H.R. 493) would establish clear guidance for health insurers and employers—as well as consumers—about the use and disclosure of genetic information. Supporters of the bill hope that by prohibiting this type of discrimination, it would encourage individuals to take advantage of genetic counseling, screening, and testing.
The House passed H.R. 493 on April 25, 2007 by a vote of 420 to 3; however, the Senate has not yet considered its version of the bill (S. 358) which currently has over 40 cosponsors. President Bush has indicated his support for legislation to protect genetic information privacy and has stated he will sign such legislation into law.
In 2003 and again in 2005, the Senate overwhelmingly approved similar legislation on genetic information nondiscrimination, but the House never acted on it.
ASH's policy on genetic information nondiscrimination urges support for new federal guidelines that prohibit health insurers, employers, and other entities from disclosing an individual's genetic information for any purpose or using this information to determine insurance coverage, premium rates, employment eligibility, or compensation. The policy advocates for total patient confidentiality and privacy for an individual's genetic information and encourages patients to avail themselves of genetic screening, counseling, and testing. Moreover, the Society states its support for the further development of genetic science as a modern medical tool to fight disease.
