Download Policy Statement on Genetic Testing

National American Affairs/Domestic Policy
Chicago
July 1997
POLICY STATEMENT ON GENETIC TESTING
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Advances in genetic science are creating a paradigm shift in medicine—from
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symptomatic to presymptomatic diagnoses—thus potentially leading to a disease-free
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future. Researchers are currently racing to map the whole human genome and identify
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genetic “markers” that may be predictive of the onset of disease. Genetic tests, both
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those used in research and those available commercially, may be able to demonstrate
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whether an individual holds such a marker. The availability of such tests raises some
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very important ethical, legal, and social issues.
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Recently, scientists have isolated two genes (BRCA1 and BRCA2) that are closely linked
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to breast and ovarian cancer if they are mutated, or altered.
Further research has
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indicated that certain mutations of these genes have a higher-than-expected frequency in
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women of Ashkenazi (Eastern European) Jewish descent than in other population groups.
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(Some other BRCA1 and BRCA2 mutations are also found in higher-than-expected
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frequency in other population groups, and it is expected that more will be identified. The
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Ashkenazi Jewish population was chosen simply as a useful, early sample because of
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coherent population patterns.) It is now believed that 1 in 50 Ashkenazi Jewish women
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may carry one of these mutations, which may account for a slight (1%) increased lifetime
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risk for breast or ovarian cancer. It is important to note in this context that hereditary
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links account only for an estimated 5 to 10% of all cases of breast cancer.
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Because at this time there are few preventive measures and no cure for breast cancer, the
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availability of genetic tests to determine the presence of mutations, and the corresponding
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degree of risk for the disease, raises some extremely important issues for Jewish women
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and their families. Imprecise press accounts and other forms of misinformation have
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raised the specter that Jewish women have a unique and greatly heightened predisposition
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to breast cancer, with implications for potential discrimination in employment and
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insurance. The most obvious way the discrimination may occur is through the use of
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genetic information by insurance carriers or employers.
National American Affairs/Domestic Policy
Chicago
July 1997
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Genetic tests for breast cancer cannot be 100% predictive of the onset of the disease. If
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an individual is found to have one of the mutations, s/he may have up to a 65% chance of
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eventually developing breast cancer.
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mutation(s) will never have the disease. Conversely, an individual who tests negative for
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the mutations may still get breast cancer (all women have a 1 in 8 chance of having the
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disease if they live to age 85.) Moreover, a test may yield inaccurate results. The
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reproducibility, sensitivity, specificity and predictive value of the tests are not fully
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known.
However, one in three individuals with the
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Nevertheless, information from these tests and research studies may be utilized by
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insurers or employers to discriminate. Discrimination based on genetic information has a
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long and well-documented history in other population groups with diseases such as
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sickle-cell anemia and hemachromatosis. Fear of discrimination is currently dissuading
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members of the Jewish community from participating in potentially important research
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projects or from getting a genetic test even where it is appropriate.
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The Jewish community has long supported individuals’ rights to determine the course of
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their own medical care and has actively participated in medical research. Hadassah
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believes that there should be ample opportunities for individuals to participate in
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promising research studies.
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community’s interest in abating fear and avoiding stigmatization or discrimination and
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the scientific community’s interests in furthering its knowledge in the quest to
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understand, prevent and cure cancer.
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potentially aggressive and fear-based marketing techniques of those who stand to profit
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from commercially available genetic tests.
However, legitimate tension exists between the Jewish
There is also the need to protect against the
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Hadassah is committed to the following courses of action:
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Initiating a community-wide discussion nationally on the issue of breast cancer,
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hereditary and otherwise—its causes and risks, facts and myths. In order to combat
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misinformation, Hadassah will disseminate public health materials to help Jewish women
National American Affairs/Domestic Policy
Chicago
July 1997
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and their families assess their risk and their appropriateness for genetic testing and/or
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involvement in university-sponsored research protocols. It will also continue to advocate
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for measures aimed at identifying prevention strategies and finding a cure for breast
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cancer;
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Advocating for legislative measures, at both federal and state levels, that will
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compliment the “Kennedy-Kassebaum” law and prevent genetic-based discrimination in
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insurance and employment and ensure the confidentiality of medical records;
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3.
Supporting widely available and appropriately administered research studies
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aimed at providing more information on this topic. Such research studies must be
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accompanied by proper informed consent procedures and comprehensive genetic
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counseling;
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Working with the genetic testing companies, the oncological community and
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others to combat fear-based and stigmatizing marketing techniques and inappropriate
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uses of genetic tests in the Jewish community, while reiterating that current knowledge
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does not provide a mandate for broad-scale testing of individuals outside of a controlled
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research setting; and,
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Continuing to promote the study of the usefulness of genetic tests in the breast
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cancer context, the potential need for government regulation and the impact of test results
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on members of the Jewish community.
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Hadassah is hopeful that genetic research will play a major role in life-saving disease
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prevention and cures for all people, regardless of gender or ethnic heritage. However, it
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is essential that our country’s public policy provide the needed safeguards with regard to
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these important findings.