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Contact Congress in Support of Genetic Information Nondiscrimination Legislation
Please join ASH's advocacy efforts by contacting your Representative and Senators in support of the Genetic Information Nondiscrimination Act (H.R. 493/S. 358). This legislation 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 legislation has easily passed the Senate in the last several Congresses, but has stalled in the House. With the change in leadership in the House of Representatives and President Bush's recent indication of support for legislation to protect genetic information privacy, there may be a real opportunity this year to enact legislation. If you have questions, or need more information, please contact ASH Research Advocacy Manager Tracy Becker at tbecker@hematology.org or (202) 776-0544.
Dear [ Decision Maker ] , As a hematologist, I am interested in relieving my patients' fear of genetic information discrimination and prohibiting 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. I urge you to cosponsor the Genetic Information Nondiscrimination Act (H.R. 493/S. 358). 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. I would greatly appreciate your support of the Genetic Information Nondiscrimination Act (H.R. 493/S.358). Please contact me if I can provide additional information to you.
Sincerely, |
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| Background Information |
H.R 493 and S. 358 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.
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.
We encourage you to customize your email to your Representative and Senators as much as possible, emphasizing your personal experiences about the benefits to individuals in learning about their genetic information.
