October 31, 2014 · 7 Cheshvan

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Nation’s Largest Jewish Organization Calls for Anti-Genetic Discrimination Language

Contact: Raanan Weintraub, (202) 387-2800


WASHINGTON August 9, 1999 — In a letter issued today, Rabbi David Sapersetin, Director of the Religious Action Center and Ellen Rosenberg, Executive Director of Women of Reform Judaism call on Representatives William Thomas and Benjamin Cardin to develop bipartisan legislation to protect the confidentiality of medical records and to include genetic anti-discrimination language to your bill.

The complete text of the letter follows:

Dear Chairman William Thomas and The Honorable Benjamin Cardin:

On behalf of the Union of American Hebrew Congregations, representing over 1.5 million Reform Jews and 875 synagogues across North America, and the Women of Reform Judaism, representing 600 sisterhoods and 100,000 Reform Jews, we want to express our support for your efforts to develop bipartisan legislation to protect the confidentiality of medical records. We also urge you to include genetic anti-discrimination language to your bill.

A woman with a damaged BRCA1 or BRCA2 gene (a cancer pre-disposing gene), and a family history of breast cancer may stand as much as an 85% chance of developing breast cancer in her lifetime (in contrast to the average woman's chance of roughly 12.5%). Jewish women, in particular, are more susceptible to insurance discrimination because this genetic mutation has appeared at a higher rate in the Jewish population. An effective medical privacy bill would provide the necessary protection for individuals whose privacy is breached, by preventing misuse of genetic information.

Representative Louise Slaughter introduced the Genetic Information Non-Discrimination in Health Insurance Act of 1999 (H.R. 306) to combat genetic discrimination in health insurance. This bill would prohibit health insurers from "using genetic information to deny, refuse to renew, cancel, or change the terms and conditions of coverage and prevent insurance companies from requesting or requiring genetic information from a third party." We have endorsed the Genetic Information Non-discrimination in Health Insurance Act as an excellent approach toward providing comprehensive protection against the misuse of genetic data.

We encourage you to ensure that measures to ensure privacy and non-discrimination go hand-in-hand by including a genetic nondiscrimination component to your privacy legislation. Please let us know if we can provide you with any further information or assistance.

Respectfully,

/s/
Rabbi David Saperstein
Director, Religious Action Center of Reform Judaism

/s/
Ellen Rosenberg
Executive Director, Women of Reform Judaism

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The Religious Action Center of Reform Judaism is the Washington office of the Union of American Hebrew Congregations and the Central Conference of American Rabbis, representing 1.5 million Reform Jews and 1,800 Reform rabbis in 875 congregations throughout North America.



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