Knowledge is Power: Tidewater Jewish community Jewish genetic screening

by | Nov 22, 2013 | Featured

Sponsored by Jewish Family Service
Sunday, Dec. 15, 10 am–3 pm Simon Family JCC

I have recently had the honor of attending two very special Shabbat services, the first at Congregation Beth El and the second at Ohef Sholom Temple. Both Rabbi Jeffrey Arnowitz of Beth El and Rabbi Rosalin Mandelberg at Ohef Sholom chose to celebrate “Blue Gene Shabbat,” an opportunity for congregants and other interested community members to be casual and learn more about the upcoming screening at the Simon Family JCC. Sponsored by Jewish Family Service of Tidewater in partnership with Eastern Virginia Medical School and the United Jewish Federation of Tidewater’s Young Adult Division and Maimonides Society, the screening is being held in coordination with the American Red Cross Blood Drive, in memory of Sharon Elstein.

Both “Blue Gene Shabbats” featured individuals speaking about how one of these conditions has affected them. At Beth El, Lois Pepkin shared her own family’s emotional story, as her granddaughter Gabi has familial dysautonomia, or “FD”.

At Ohef Sholom, Rabbi Mandelberg recounted two moving and emotional stories congregants had shared with her in regard to their own experiences with genetic disorders and her hope that members of our community be tested. “Even if you are intermarried or your spouse converted, even if you are beyond child-bearing age or have closed the kitchen on your own reproduction, another family member can learn from your information,” shared Rabbi Mandelberg. “You can make that much of a difference in someone’s life. As our tradition teaches, ‘saving a life is like saving the entire world.’”

When thinking of Jewish genetic disorders, most people think of Tay-Sachs. Many members of the community participated in the Tay-Sachs screening at the JCC on Newport Avenue in the 1990s. But there are actually 19 disorders that have an increased frequency in individuals of Eastern European Jewish ancestry, or Ashkenazi descent. One in four Jews may be a carrier for one of these conditions. The 19 disorders may be found in the “Frequently Asked Questions (FAQ’s)” at

Getting screened is easy—it is a simple blood test. It is vital information, particularly for those approaching, or at, child-bearing age. However, it is also vital information for parents and grandparents who may want to know if he or she is a carrier for one of these conditions, in order to provide his or her children with this information. If a parent is a carrier, there is a 50% chance that his or her child is a carrier. Even if not aware of a family history of any of these disorders, everyone should get screened. A carrier may pass on a mutation from generation to generation unknowingly. It is only expressed when a carrier reproduces with another carrier of the same condition. At that point, the risk of having a child with that particular disorder is 25 percent.

Anyone who is Ashkenazi or has Ashkenazi heritage is recommended for screening. In addition, it is recommended that those with an Ashkenazi partner get screened, because it is still possible that both are carriers. While these disorders are thought of as “Jewish,” they can occur in other ethnicities and populations.

The screening is free thanks to generous donors; however, those with health insurance will have their insurance billed (no copayments, and cost is not applied to deductibles).

To register for the screening and learn more about these conditions, why it is important to get screened, about being a carrier and more, visit Registrants should complete the consent form and bring it to the screening.

Jewish Family Service is a constituent agency of United Jewish Federation of Tidewater.

by Betty Ann Levin,
Jewish Family Service executive director