Resolution Adopted by the CCAR

BREAST CANCER, GENETIC TESTING, AND HEALTH INSURANCE DISCRIMINATION

Adopted by the 108th Annual Convention of the
Central Conference of American Rabbis

June, 1997

Background

Judaism teaches us that an individual human life is of infinite value and that the preservation of life supersedes almost all other considerations. 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 again reaffirm the right of all individuals to comprehensive health coverage -- in this case, 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 mutations that are related to breast and ovarian cancer, though not conclusive, has the potential to be a great help to women in the fight against cancer.

But genetic testing creates a significant risk for discrimination by health insurance carriers. Health insurance carriers are aware that individuals with a genetic predisposition to a particular disease are more likely to develop the disease. Women with such genetic mutations may face termination of their medical insurance or, at the very least, higher premiums and coverage discrimination from insurance carriers. In addition to the devastating consequences of being denied insurance, fear of such discrimination combined with an overall lack of reliable public information on the issue of genetic links to breast cancer may cause women to avoid testing, undermining any positive effects genetic testing might have.

Recent evidence has shown that the problems of misinformation and fear of testing occurs not only in the case of genetic testing for breast cancer but for other genetic pre- dispositions as well. Genetic research has the potential for helping to discover the causes and, potentially, cures for various diseases. But 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 Commission on Social Action of Reform Judaism resolves to

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

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

  3. Support legislation that would prohibit health insurance carriers from requiring mandatory genetic tests, or from requesting information regarding the results of such tests;

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

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

  6. Encourage those in our community who seek genetic testing for any reason to also seek genetic counseling.