Posted on June 23, 1997
Comments Off on Genetic Testing, Discrimination and the Jewish Community
Recent advances in genetic science have created hopeful new medical possibilities and have also raised serious concerns. As researchers race to map the whole human genome and identify mutations which might be predictive of the onset of disease, genetic tests, utilized within a controlled research environment and now commercially available, may determine whether an individual might hold such a marker. In the future, these new technologies may also be translated into new drugs and/or therapies for treating and/or preventing disease. At the same time that we are encouraged by health benefits to be gained from these new tests, there is also the possibility for abuse of the genetic information revealed and the potential for employment and insurance discrimination.
The Jewish community has become increasingly aware of these risks, which affect all people, primarily as a result of findings that mutations in two genes linked to breast and ovarian cancer (called BRCAI and BRCA2) may be more prevalent among individuals of eastern and central European Jewish descent — i.e., Ashkenazi Jews. The initial research concerning inherited breast cancer risk among Ashkenazi Jews centered on families with a high incidence of breast and ovarian cancer for several generations and was facilitated by the availability of stored previously screened genetic samples from Ashkenazi families screened for earlier status for other diseases, such as Tay Sachs. While this population was chosen for research as a convenient early sample, possible BRCA1 or BRCA2 mutations are found in higher than expected frequency in other population groups as well.
Because at this time there is no sure means of prevention against or cure for breast or ovarian cancer, the availability of genetic tests to determine the presence of mutations, and the corresponding degree of risk for disease, raises important issues for Jewish women and their families. Genetic tests for breast/ovarian cancer are not 100% predictive of the onset of disease. Furthermore, research to date has not provided an accurate way to assess any individual’s actual risk. Indeed, the ability to reproduce, the sensitivity, and the predictive value of the tests are not fully known. While women who carry an altered gene might never develop the disease, all women have a 1 in 8 chance of developing breast cancer if they live to age 85.
Although inherited susceptibility genes only account for an estimated 5-10% of all cases of breast cancer, imprecise press accounts and other sources of misinformation have raised the specter that Jewish women have a unique and greatly heightened predisposition to this disease, creating fear and increasing the potential for insurance and employment discrimination. Moreover, testing one member of a family has implications for other family members, which may also serve as the basis for discrimination. Discrimination based on genetic information has a long and well documented history. Concern about discrimination is currently dissuading members of the Jewish community from participating in potentially important research projects.
The Jewish community has long supported the right of individuals to determine the course of their own medical inquiries and care, has actively participated in medical research aimed at ameliorating disease, and believes that there should be ample opportunity for individuals to participate in promising research studies. Indeed, we recognize the interest of both the scientific and biotechnology community in expanding their knowledge base in the quest to understand, prevent and cure cancer. At the same time, the Jewish community has a strong interest in abating fear and avoiding stigmatization or discrimination. There is a need, as well, to protect against the aggressive fear-based marketing techniques from companies providing genetic tests available on the commercial market.
The Jewish Council for Public Affairs (JCPA) therefore believes that the organized Jewish community should:
- In coalition with like-minded groups, develop public policy and legislative strategies regarding the use of information provided by genetic testing; support legislative measures, at both the federal and state levels — which complement the “Kennedy-Kassebaum” law — to prevent genetic-based employment and insurance discrimination and to ensure the confidentiality of medical records.
- Continue the national, community-wide discussion on the issue of breast cancer — its causes, risks, facts and myths; continue to promote study of the usefulness of genetic testing for breast cancer, the call for government regulation, and the impact of test results on members of the Jewish community; advocate for increased research measures to identify prevention strategies and find a cure for breast cancer.
- Work with appropriate agencies to disseminate proper public health materials in order to combat misinformation and help individuals and families assess the risks and benefits of genetic testing and/or involvement in university-sponsored research.
- Advocate for the inclusion of comprehensive genetic counseling performed by trained individuals, along with a detailed informed consent process (both written and interactive) as a part of any testing context prior to actually taking a sample.
- Work with the various entities connected to the commercial genetic testing market and others, including the genetic testing companies and the oncological community, to combat fear-based and stigmatizing marketing techniques and inappropriate uses of genetic tests. Emphasize that current knowledge about genetic variations does not provide a mandate for broad-scale testing of individuals outside the controlled research setting.
- Continue its support of medical research aimed at ameliorating disease, including breast cancer, and including the identification of genetic mutations which may be predictive of the onset of disease;
- Support continued funding for research on the ethical, legal and social implications of genetic testing.