Dr. Adele Schneider, the director of clinical genetics and medical director of the Victor Center for Jewish Genetic Diseases at the Albert Einstein Medical Center, discusses the center's Jewish genetic diseases outreach program.
Einstein’s Victor Center Launches Jewish Genetic Diseases Outreach Program
With Dr. Adele Schneider, Director, Clinical Genetics, Medical Director, Victor Center for Jewish Genetic Diseases, Albert Einstein Medical Center
One in four Ashkenazi Jews is a carrier for one of the 19 Jewish genetic diseases (JGDs). Didn’t know that there are 19 JGDs or that the carrier rate is so high? Educating the public about those astounding facts is the focus of Screen For Nineteen, an outreach program launched through Victor Centers in Boston, Miami, Atlanta and Philadelphia’s Einstein Medical Center. More than 1,600 rabbis have received informational materials about the 19 diseases and the ease of screening for them. Why rabbis? Because the goal is to reach people who are about to be married and, in most cases, create a family. Without preconception screening, couples run the risk of having a child who is born with one of the 19 JGDs.
Isn’t 19 JGDs … a lot? “It does seem so,” says Dr. Adele Schneider, director of clinical genetics and medical director of the Victor Center for Jewish Genetic Diseases at Albert Einstein Medical Center. “Nineteen is more than most other population groups carry. Or perhaps it’s that we have discovered more within the Jewish population because they are easier to find in a population that intermarries. The good news is that we know what to screen for and that allows us to take action.”
But not everyone knows that screening for all 19 JGDs is available. “People are not getting screened as much as we would like because there is a lack of knowledge about what is possible, even within the medical community,” Schneider agrees. “If an OB-GYN doesn’t have a big population of Jewish patients, the doctor may do what his or her professional association recommends, which is screen for four genetic diseases.”
People who have even one Jewish grandparent should be tested. “Jewish genes don’t get lost,” Schneider says, “and it is better to have the information and make decisions, then have a child who suffers with a lifetime of illness.”
The screening is done via a simple blood test at the Victor Center. Results are returned within four weeks. The test has a 90-98 percent accuracy rate.
What happens if both parents test positive for a JGD? “They can undergo IVF and preimplantation genetic testing to determine which embryos may have the diseases,” Schneider explains. “Only those embryos that do not have the disease in their DNA would be implanted into the woman.”
Those who have qualms about the use of IVF and possible destruction of embryos should know that Jewish laws allows for both, Schneider says. “An embryo has no standing in Jewish law until it is implanted in the womb and genetic testing is done well before that,” she explains.
Schneider also clarifies that separate testing is available for BRCA 1 and 2 genetic mutations, which appear more commonly in Ashkenazi Jews than in the general population. The Victor Centers concentrate on JGDs; BRCA mutations are cancer-related and handled through Einstein’s other genetic testing services.
For more information, visit Einstein’s Victor Center website: www.victorcenters.org
“Fitting Into Your Genes: Jewish Genetic Diseases, Data, Dilemmas and Decisions” Sunday, January 12, 10:30 a.m. – 12:30 p.m. The symposium is free and open to the community. Genetic testing will be available after the information session. Har Zion Temple, 1500 Hagys Ford Road, Penn Valley, PA 19072