Genetic Testing, Discrimination, and the Jewish Community (1999)
WHEREAS, recent advances in genetic science have created hopeful new medical Possibilities, they have also raised serious concerns. At the same time that we are encouraged by health benefits to be gained from these new tests in identifying gene mutations, finding new drugs or therapies for treating or preventing diseases, there is also the possibility for abuse of the genetic information revealed and the potential for employment and insurance discrimination; and
WHEREAS, the Jewish community has become increasingly aware of these risks, which affect all people, primarily as a result of findings that mutations in genes linked to Tay Sachs, breast and ovarian cancer may be more prevalent among individuals of eastern and central European Jewish descent; and
WHEREAS, discrimination based on genetic information has a long and well documented history. Concern about discrimination is currently dissuading members of the Jewish community and other racial/ethnic groups from participating in potentially important research and diagnostic projects; and
WHEREAS, the Jewish community recognizes the interest of both the scientific and biotechnology community in expanding their knowledge base in the quest to understand, prevent and cure genetic diseases and at the same time, the Jewish community has a strong interest in abating fear and avoiding stigmatization or discrimination, as well as protecting against the aggressive fear-based marketing techniques from companies providing genetic tests available on the commercial market.
NOW THEREFORE, BE IT RESOLVED, that The United Synagogue of Conservative Judaism endorses the following principles and actions:
- Continue the national, community-wide discussion on the issue of genetic diseases including breast cancer, their causes, risks, facts and myths: continue to promote study of the usefulness of genetic testing and to increase research measures to identify prevention strategies and find cures.
- 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.
- 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 the 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; and
BE IT FURTHER RESOLVED, that The United Synagogue of Conservative Judaism encourages its affiliated congregations to educate its members about the benefits and concerns connected with genetic testing; and
BE IT FURTHER RESOLVED, that The United Synagogue of Conservative Judaism calls upon the members of its affiliated congregations to communicate their concerns with their federal, state/provincial and local representatives.
