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OCR Page 1 of 51TWENTY.
Women's Legal Defense 25
Chris
November 14, 1997
Ihd
Bruce Reed, Assistant to the President for Domestic Policy
Executive Office of the President
2nd Floor, West Wing
1600 Pennsylvania Ave., NW
Washington, DC 20500
Dear Mr. Reed:
The job of deciphering every gene found in the human body, more than 80,000 in all, is
proceeding at record speed. Today, genetic tests are available for over 400 disorders. Millions of
women and their families stand to benefit from improved prevention, detection and treatment of
diseases like breast and ovarian cancer alone. But without adequate protection against
discrimination and misuse, the potential for real medical benefits from genetic advances may be
outweighed by harmful consequences, such as the loss of health insurance or employment. For your
information, the Women's Legal Defense Fund (WLDF) has enclosed a chart comparing pending
legislation that would prohibit discrimination by employers and health insurers on the basis of
genetic information.
The medical community and women's health advocates are working toward the same goal of
improving women's health, and genetics research can bring us closer to this goal. However, there is
growing concern that genetic information may be used in ways that hurt patients and research
participants. Several researchers, in fact, are finding a shortage of volunteers willing to participate
in studies, citing fear of discrimination as a significant deterrent.
Let us imagine a very plausible situation. Theresa is a 46-year old woman whose mother and
sister both died in their mid-40s from breast cancer. She has heard of a research study being
conducted by the National Institutes of Health on prevention of breast cancer. By participating in
this study, she will learn whether she has inherited a gene that predisposes her to breast cancer and
be closely monitored for any signs of the disease. While she would like to participate, she knows
there are risks. Even though she does not have breast cancer, an insurance company may deny her
coverage simply for having taken the test, assuming that by asking she has indicated her greater risk.
In addition, she is worried that she may jeopardize her children's health insurance, since her genetic
makeup influences her children's as well. If her employer or future employer learns about the
genetic test, her ability to keep or get a job could be severely undermined by assumptions that she
would be too costly to insure. Despite her desire to participate, she decides not to volunteer in the
study, foregoing both the benefits to her own health and to the advancement of scientific knowledge.
1875 Connecticut Ave., NW
Suite 710
Washington, DC 20009
Telephone (202) 986-2600
Fax (202) 986-2539
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