Background
Individuals of Ashkenazi descent are disproportionately affected by a multitude of Jewish genetic diseases. The Union for Reform Judaism (Union) and Central Conference of American Rabbis (CCAR) have a long history of involvement in issues relating to these disorders. In 1975, the CCAR spoke out on Tay-Sachs Disease, calling upon rabbis to include education about pre-marital screening for all couples contemplating marriage. In 1997, both the Union and CCAR adopted resolutions on "Breast Cancer, Genetic Testing, and Health Insurance Discrimination" that (1) supported continued research for the prevention, early detection and treatment of genetic disorders, (2) promoted education about genetic testing, and (3) supported legislation mandating privacy for personal genetic information and outlawing discrimination by insurance companies on the basis of genetic characteristics. In 2001, the Union's Department of Jewish Family Concerns published the Bioethics Study Guide #12, focusing on issues relating to genetic testing. Most recently, in 2006 the CCAR adopted a resolution on "Jewish Genetic Diseases" urging its members to include information about Jewish genetic diseases in pre-marital counseling for couples of child-bearing age and supporting legislation banning discrimination by health insurance carriers arising from genetic information. Other educational resources have also emerged, such as those created by the Jewish Genetic Disease Consortium.
While education has been effective in increasing awareness about some genetic diseases such as Tay-Sachs, other genetic diseases are less well known. Significant scientific advances now make it possible to screen and test for 11 conditions: Tay-Sachs Disease, Canavan Disease, Gaucher Disease, Familial Dysautonomia, Cystic Fibrosis, Bloom Syndrome, Fanconi Anemia type C, Niemann Pick type A, Mucolipidosis type IV, Glycogen Storage Disease type 1a and Maple Syrup Urine Disease. As our knowledge expands, screening will become available for more disorders.
With this increase in available testing comes the need to ensure that rabbis, cantors and seminary students are educated and trained to counsel those at risk for any of these genetic diseases. Similarly, information about these diseases and the testing that can be done should be readily available to our congregants. The underlying principle remains as true now as when the CCAR first adopted its Tay-Sachs resolution in 1975: carrier screening can lead to the prevention of disease in future offspring. Knowing more about these serious genetic conditions, as well as the availability of screening for these disorders, will empower young adults in the Jewish community to become proactive in their family planning and may avert the anxiety surrounding prenatal carrier screening or the need to make a potentially heart-wrenching decision during pregnancy.
Therefore, the Union for Reform Judaism resolves to:
- Join with the CCAR, American Conference of Cantors (ACC) and Hebrew Union College-Jewish Institute of Religion (HUC-JIR) to work in concert with the Jewish Genetic Disease Consortium to educate our members about Jewish genetic diseases.
- Work with HUC-JIR to ensure that rabbinical and cantorial students receive appropriate and up-to-date training on Jewish genetic diseases.
- Support the members of the CCAR and ACC in furthering their existing efforts to include the latest information on Jewish genetic diseases in their premarital counseling sessions, and to encourage couples to undergo carrier testing.
- Encourage all members of our congregations who are of Eastern/Central European descent and are between the ages of 18 and 45 to consider screening for Jewish genetic disease carrier status.