Technology – Genetic Testing and Discrimination (1998)

Recent advances in genetic science have created hopeful new medical possibilities and have 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 may 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 there is also the possibility for abuse of the genetic information revealed and the potential for employment and insurance discrimination.

Jews have already gained vast benefits from genetic research with carrier testing now available for a number of diseases among which are Tay Sachs, cystic fibrosis and Gaucher disease. If we succumb to the temptation to suppress scientific information for fear of its abuse we will be depriving society of much helpful information. The Jewish community needs to work towards curbing possible abuse, not veto of the research.

Women’s League for Conservative Judaism urges it members to:

1. Form a coalition with like-minded groups to help develop public policy and legislation strategies regarding the use of information provided by genetic testing;
2. Support legislative measures to prevent genetic-based employment and insurance discrimination and to ensure the confidentiality of medical records;
3. Work with appropriate agencies to disseminate proper public health materials to help dispel misinformation and help individuals and families assess the risks and benefits of genetic testing;
4. Advocate for comprehensive genetic counseling performed by trained individuals, along with a detailed informed consent process, both written and interactive, as part of any testing prior to the test;
5. Work to combat fear based marketing techniques and inappropriate uses of genetic tests including the broad scale testing of individuals outside the controlled research setting;
6. Continue support of medical research aimed at ameliorating disease and including the identification of genetic mutations which may be predictive of the onset of disease;
7. Support continued funding for research on the ethical, legal and social implications of genetic testing.