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December 22, 2014 | 30th Kislev 5775

Breast Cancer, Genetic Testing, and Health Insurance Discrimination

Adopted by the General Assembly
Union of American Hebrew Congregations
October 29-November 2, 1997 Dallas

Breast Cancer, Genetic Testing, and Health Insurance Discrimination

Background
Judaism teaches us that every individual human life is of infinite value. Although we are commanded to observe many mitzvot which serve to guide our actions and enhance our experiences, all but a small number of them may be transgressed in order to save a human life. We must even forgo the laws of our sacred Sabbath to save a person who has been injured and may die despite our efforts. The preservation of life thus supersedes almost all other considerations. As Maimonides said, The one who saves a single life, it is regarded as if that person has preserved the entire world.

Acting on this vital imperative, Jews have long viewed the provision of health care as a societal obligation; one which requires us to ensure that medical coverage is available to anyone regardless of financial capacity. In 1993, the UAHC affirmed this commitment in its resolution supporting universal access to health care. Now, as scientific advances have enabled doctors to detect genetic links to disease, we affirm the right of all individuals to comprehensive health coverage regardless of their genetic makeup, and we assert the importance of guaranteeing that those in our community who seek genetic testing are fully informed about both its benefits and risks.

In the United States today, breast cancer is the leading cause of death for women under 50. One in every eight women will contract breast cancer in her lifetime, a dramatic increase from one in every twenty women only twenty years ago. This staggering growth has the scientific and medical communities desperately looking for causes, cures, and methods of early detection. New information about genetic patterns that are related to breast and ovarian cancer, though not conclusive, has the potential to be of great help to women in the fight against cancer. But genetic testing creates a significant risk of discrimination by health insurance carriers. Health insurance carriers are aware that individuals with a genetic predisposition to a particular disease may be more likely to develop the disease. Women with such genetic predisposition's may face termination of their medical insurance or, at the very least, higher premiums and coverage discrimination from insurance carriers. We have seen this before, as President Clinton reminded us in his July 1997 address on the subject, when in the 1970s African Americans predisposed to sickle-cell anemia faced health insurance discrimination.

In addition, fear of such discrimination combined with an overall lack of reliable public information on the issue of genetic links to cancer may cause women to avoid testing, undermining any positive effects genetic testing might have. Similar fears and lack of information may discourage individuals from participating in research studies which have the potential for uncovering the causes and cures for various diseases. As President Clinton urged, we cannot afford to let our progress either in science or in extending health care to the American people to be undermined by the misuse of what is a miracle of genetic testing. Americans should never have to choose between saving their health insurance and taking tests that could save their lives. In addition, participants in genetic research studies should receive appropriate counseling, both before deciding whether to participate in any such studies and after the results are known.

THEREFORE, the Union of American Hebrew Congregations resolves to:

  1. Support continued research on prevention, early detection, and treatment of breast, prostate, and ovarian cancer;

  2. Promote education and open dialogue within our families, congregations, and organizations about breast, prostate, and ovarian cancer prevention, detection, and treatment, as well as about genetic testing and its implications;

  3. Encourage those who seek genetic testing for any reason to also seek genetic counseling;

  4. Support legislation that would prohibit health care providers or researchers from disclosing genetic data concerning an identified individual without the written consent of the individual;

  5. Commend the Clinton administration for its strong dedication to protecting both vital genetic research and individual, family, and community health care needs;

  6. Support legislation that protects against all forms of potential discrimination by health insurance carriers based on genetic information and inherited characteristics, including the use of such information in determining denial of, limits to, or increased premiums on coverage; and

  7. Support legislation that would prohibit health insurers from requiring genetic tests for underwriting purposes or from requesting information regarding the results of such tests

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