Resolution Adopted by the CCAR
JEWISH GENETIC DISEASES
Adopted by the 117th Annual Convention of the Central Conference of American Rabbis
San Diego, CA
In 1975, at its 86th Annual Convention, the CCAR adopted a Resolution on Jewish Genetic Diseases, namely Tay-Sachs. In 1997, at its 108th Annual Convention, the CCAR adopted a Resolution on Breast Cancer, Genetic Testing, and Health Insurance Discrimination. Concurrently, at the 1997 UAHC Biennial in Dallas, the Union adopted a nearly identical position supporting continued research for prevention, early detection, and treatment of genetic disorders, promoting education about genetic testing, and supporting legislation that outlaws genetic discrimination by insurance carriers and mandates privacy of personal genetic information. Additionally, the URJ Department of Family Concerns published a Bioethics study guide #12 in 2001 that focuses on genetic testing. We urge our members to review this guide for a detailed understanding of issues raised in this resolution.
Over the past three decades, significant advances in our understanding of genetic conditions have enabled us to screen and test for a variety of serious genetic disorders. Whereas prenatal and preconception screening for Tay-Sachs has been available to individuals of Ashkenazi Jewish descent for several decades, even in the decade since our last resolution carrier testing for a host of other autosomal recessive genetic disorders havs become available to members of the Jewish community. A couple or pregnancy is not “at-risk” for an affected child unless both members of a couple carry a copy of an alteration in the same gene. About 1 in 4 Ashkenazi Jews are carriers of one of a number of genetic conditions, yet testing for most couples is most often done in the context of an ongoing pregnancy. This means that a pregnant woman may not learn of her carrier status until well into a pregnancy, leading to high levels of anxiety while waiting for her partner.s results. Even more disconcerting is learning during an ongoing pregnancy, that both members of the couple are, in fact, carriers of the same genetic condition. This leads to very difficult discussions and emotional decisions about prenatal diagnosis for the fetus and what to do if the fetus is found to be affected. Preconception screening could avert these hurried decisions for an at-risk couple. Furthermore, with advances in assisted reproductive technologies, some couples may be able to avert prenatal diagnosis altogether by taking advantage of preimplantation genetic diagnosis, but only if they are both known, in advance, to be carriers of the same genetic condition.
While the list of conditions for which carrier testing is now available is growing steadily, there are 11 that represent the current panel of conditions that may be offered to individuals of Ashkenazi descent. These include: 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. Although most of these conditions also occur in the non-Jewish population (but at a lower frequency), carrier screening for mutations in individuals of Ashkenazi ancestry is far easier because of common lineage and a limited number of gene changes in this population. There are more disorders being added to the testing panel as our knowledge expands in this field. However, the underlying principles are essentially unchanged: Carrier screening can lead to prevention of disease in future offspring.
Knowing more about these serious genetic conditions, as well as the availability of screening for these disorders, would 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 CCAR Resolves:
- To urge its members to include in pre-marital counseling for all marriages at which we are asked to officiate for couples of child-bearing age:
- Discussion of the possibility that the couple may be carriers of one or more Jewish Genetic Diseases.
- Detailed information on the specific Jewish Genetic Diseases for which there is testing.
- Encouragement to seek genetic counseling to learn of the implications and options available to them to have healthy children.
- Information regarding local genetic counseling centers.
- To support legislation banning potential discrimination by health insurance carriers arising from genetic information and inherited characteristics, including the use of such information in determining denial, limits, or increased premiums on coverage.
- To ask the Union for Reform Judaism.s Department of Family Concerns to join the CCAR, ACC, and HUC-JIR, to work in concert with the Jewish Genetic Disease Consortium (www.jewishgeneticdiseases.org) to build on the 2001 JFC manual in creating educational resources for Rabbis, Cantors, future Rabbis and Cantors, and the communities we serve, and particularly to engage colleagues who work with college students and young couples approaching marriage.