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Hadassah Applauds Introduction Of Genetic Information Non-Discrimination Legislation In The House

Emily North

(New York, NY -- March 10, 2005) -- Hadassah, the Women’s Zionist Organization of America, commends the introduction of the “Genetic Information Non-Discrimination Act of 2005” in the U.S. House of Representatives by lead sponsors Rep. Judy Biggert (R-IL), Rep. Bob Ney (R-OH), Rep. Louise Slaughter (D-NY) and Rep. Anna Eshoo (D-CA).

This new House bill is identical to S. 306, the Genetic Information Nondiscrimination Act of 2005, which recently passed the Senate by a unanimous vote of 98-0, and prohibits all insurance providers from raising premiums or restricting enrollment based on an individual’s genetic information. The bill also restricts employers from discriminating against employees based on their genetic information.

For nine years Hadassah’s 300,000 members have led the fight for protection against health insurance and employment discrimination on the basis of genetic information.

June Walker, National President of Hadassah, said: “Genetic research can potentially play a major role in preventing disease and saving lives - but fears of health insurance and employment discrimination based on genetic information may keep individuals from undergoing genetic testing and participating in clinical trials that are critical to medical advancement. We strongly urge the House of Representatives to quickly follow the Senate’s lead by passing the Genetic Information Nondiscrimination Act of 2005 as soon as possible.”

In 1996, researchers at the Dana Farber Cancer Institute sought to initiate a large-scale study of BRCA1, the breast cancer mutation, and approached the Boston Jewish community to participate. The Boston Jewish community declined, citing inadequate protections against genetic discrimination. Realizing that fears of genetic discrimination were preventing individuals from participating in important medical research, Hadassah, in 1996, passed a policy statement resolving to advocate for legal protections against genetic discrimination.

In 1998, Hadassah convened the first Jewish Leadership Meeting on Genetics, bringing together Jewish community activists and genetic researchers to ensure the continued participation by the Ashkenazi Jewish community in critical genetic research within a framework where risks to the community are considered and minimized. Later that year, Hadassah participated in meetings, sponsored by the National Institutes of Health, National Human Genome Research Institute (NHGRI), and the National Bioethics Advisory Commission, convened to involve diverse communities in genetics research.

Hadassah has twice provided Congressional testimony on this issue. In 1998, Hadassah testified before the Senate Committee on Labor and Human Resources. In 2001, Hadassah provided testimony to the House of Representatives’ Committee on Energy and Commerce, Subcommittee on Commerce, Trade and Consumer Protection in a hearing on the potential for health insurance discrimination based on predictive genetic tests.

 

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