Women's Health
The Religious Action Center of Reform Judaism's work on these issues is supported by a generous contribution from The Barbara Bluhm-Kaul Women's Rights Issues Area Endowment.
Status
Legislative Summary
Genetic Discrimination
"Genetic information" is information about genes, gene products, or inherited characteristics that may derive from the individual or a family member. This includes family history.
"Genetic test" is the analysis of human DNA, RNA, chromosomes, proteins, and certain metabolites in order to detect heritable disease-related genotypes, mutations, phenotypes, or karyotypes for clinical purposes. Such purposes include predicting risk of disease, identifying carriers, and establishing prenatal and clinical diagnosis or prognosis. Prenatal, newborn and carrier screening, as well as testing in high risk families are included. Tests for metabolites are covered only when they are undertaken with high probability that an excess of deficiency of the metabolite indicates the presence of heritable mutations in single genes. Tests conducted purely for research are excluded from the definition, as are tests for somatic (as opposed to heritable) mutations, and testing for forensic purposes.
Recent scientific advances have allowed researchers to identify a growing number of genetic alterations that may indicate predisposition for developing cancer or other diseases. The ultimate goal of genetic testing research is the development of clinical applications for risk assessment, early detection, and appropriate interventions for individual risk reduction and disease prevention. The potential of such research raises questions about who will have access to genetic information and how this information might be used to discriminate or compromise individual privacy.
As knowledge about the genetic basis of common disorders grows, so does the potential for discrimination in insurance and employment for an increasing number of Americans. Already this potential has become a factor in making decisions about genetic testing. As an example, although a genetic test for inherited breast cancer will allow thousands of women to find out whether they carry the altered gene and potentially provide them with useful medical options, many women chose not to be tested for fear the information may affect their employment, or will be used to deny them and their families access to the health insurance coverage they need. Questions about the influence of genetic information on other forms of insurance, such as life insurance and disability insurance, also represent an area where uncertainties about risk pose a challenge, and for which there are diverse opinions related to interests and needs of corporations versus individuals.
The social, legal, and ethical challenges posed by genetic information are further confounded by the desire of companies and individuals to market genetic tests to health care providers and the public. The growing presence of marketing and promotion of genetic testing holds potential for harm, insofar as decisions regarding testing may be made on the basis of preliminary information, or at worst, on the basis of poorly understood, misleading, or false information. While corporations may regard the marketing of genetic testing as a right and an imperative, such marketing is inherently promotional and may complicate or bias the process of informed decision making by individuals and families.
- Insurance providers and employers should be prohibited from using genetic information, or an individual's request for genetic services, to deny or limit any coverage or establish eligibility, continuation, enrollment or contribution requirements.
- Insurance providers and employers should be prohibited from establishing differential rates or premium payments based on genetic information, or an individual's request for genetic services.
- Insurance providers and employers should be prohibited from requesting or requiring collection or disclosure of genetic information.
- Employment organizations should be prohibited from using genetic information to affect the hiring of an individual or to affect the terms, conditions, privileges, benefits or termination of employment unless the employment organization can prove this information is job related and consistent with business necessity.
- Employment organizations should be prohibited from requesting or requiring collection or disclosure of genetic information prior to a conditional offer of employment, and under all other circumstances, employment organizations should be prohibited from requesting or requiring collection or disclosure of genetic information unless the employment organization can prove this information is job related and consistent with business necessity, or otherwise mandated by law. Written informed consent should be required for each request, collection or disclosure.
- Employment organizations should be restricted from access to genetic information contained in medical records released by individuals as a condition of employment, in claims filed for reimbursement of health care costs, and other sources.
- Violators of these provisions should be subject to strong enforcement mechanisms, including a private right of action.
The United State Senate and House of Representatives have each passed a version of the Patient's Bill of Rights (H.R.358/S.1344). Included in the Senate version of the bill is a Title to outlaw discrimination in health insurance on the basis of a person's genetic information. The bill would prohibit group premiums from being increased based on the genetic information of a person. A plan may request — but not require — genetic information at assist in diagnosis, treatment or payment. Genetic information includes genetic tests and family history.
Breast Cancer Legislation
- The Breast Cancer Patient Protection Act of 1999 (S. 681), introduced on March 23, 1999 by Senator Tom Daschle (D-SD), would require that group and individual health insurance coverage and group health plans provide coverage for a minimum hospital stay for mastectomies and lymph node dissections performed for the treatment of breast cancer. The bill is currently sitting in the Senate Health, Education, Labor and Pensions committee.
- H. Res. 278, introduced on August 5, 1999 by Representative Charles Bass (R-NH), is a resolution expressing the sense of the House of Representative regarding the importance of education, early detection and treatment and other efforts in the fight against breast cancer. Although legally non-binding, this resolution is very important is communicating Congress's commitment to the fight against breast cancer. The resolution has been reported to the House by the Committee on Commerce and placed on the calendar by unanimous consent. There are currently 226 co-sponsors.
- The Breast Cancer and Environmental Research Act of 1999 (H.R. 3433), introduced by Nita Lowey (D-NY) on November 17, 1999, will allow the director of the National Institute of Environmental Health Sciences to make grants for the development and operation of research centers regarding environmental factors that may be related to the etiology of breast cancer. This is a new bill that has been referred to the House Commerce Committee with no co-sponsors at this time.
So-Called "Unborn Victims of Violence Act"
The "Unborn Victims of Violence Act" (H.R. 2436) establishes criminal liabilities and punishments for those who harm a fetus while committing a federal crime, whether they intended that harm or knew the woman was pregnant. Under the bill, maximum punishment would be the same as for the assault or murder of the mother. The measure would apply to 60 federal crimes and would also cover crimes committed by military personnel.
Recognizing the fetus as a separate entity with discreet legal rights independent of the pregnant woman could create future "fetal rights" that could be used against the pregnant woman. This was the real intent of the bill.
Representative Lindsey Graham (R-SC), the original sponsor of the bill, insisted that it was about protecting violence against women. Yet, he has refused to co-sponsor the Violence Against Women Act of 1999 (H.R. 357) — a package designed to reauthorize and enhance programs initiated by the VAWA of 1994 which would continue to expand Congressional commitment to making schools, streets, homes, and workplaces safe for women and children. In fact, only 2 of the 65 cosponsors of the Unborn Victims of Violence Act, Representatives Mark Green (R-WI) and Nick Rahall (D-WV), are also cosponsors of VAWA 1999.
This bill passed the House of Representative at the end of September and on February 23rd, 2000 the Senate Committee on the Judiciary held a hearing on the Unborn Victims of Violence Act (S. 1673).
Jewish Values
Women are commanded to care for the health and well-being of their bodies above all else. Our tradition teaches that when God created the universe, we were endowed with the ability to become God's partners in curing illness. Providing health is not just an obligation for the patient and the doctor, but for the whole of society. It is for this reason that Maimonides, a revered Jewish scholar, identified care for the sick as the most important communal service that a city had to offer its residents (Mishneh Torah, Sefer Hamadda IV:23).
Position of the Reform Jewish Movement
The Union for Reform Judaism passed very important policy in 1997 entitled "Breast Cancer, Genetic Testing, and health Insurance Discrimination." Following in the footsteps of Women of Reform Judaism's 1995 resolution entitled, "Medical Research and Clinical Practice," the Reform Movement recognizes that 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. However, 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.
