Forget about the Gemmorah — area rabbis are being asked to become well-versed in a far more secular subject: genetics.
The Jewish Genetic Disease Consortium, a Manhattan-based group, launched its “Couple Aware” campaign this week, an initiative that aims to train rabbis to discuss genetic disease with Jewish couples before they start a family.
That’s of particular interest to neighborhoods such as Midwood, home to a large Ashkenazi, or Eastern and Central European Jewish population — where one in five persons is a carrier for at least one genetic disease that can be fatal in early childhood and cause mental and physical deterioration.
Despite the daunting numbers, less than half of Jewish couples are screened before pregnancy, according to a recent survey conducted by the group — and that’s a problem, according to Randy Glasser, a Midwood Park resident and co-chair of the consortium.
And an even smaller percentage of couples receive information from their rabbi about genetic testing during their premarital counseling, Glasser said.
“We are trying to create an educated consumer who is screened before conception,” Glasser said.
What a couple does with the information they receive is entirely up to them, she stressed. “They can decide to raise a child with a debilitating disease, but there are choices in between.”
The program includes training sessions for rabbis at area hospitals, providing them with a crash course in genetics, and teaching them ways to incorporate what they’ve learned in to their counseling.
Area rabbis are already kvelling about the initiative.
“Saving human lives is the paramount mitzvah of our people and therefore the New York Board of Rabbis has given this project prioritized attention,” said Rabbi Joseph Potasnik of Congregation Mt. Sinai in Brooklyn Heights, and executive vice president of the board. “There is nothing more important to the Jewish community than the health of our children, and it was obvious that we as rabbis can and should do as much as possible to counsel couples about Jewish genetic diseases.”
Dr. Alvin Kass, the rabbi of the East Midwood Jewish Center on Ocean Avenue, said his advice would be to urge testing — but to let the couple decide what’s best for their future family.
“Each couple has the right to make their own decision— but they need to do so based on the facts,” he said.
Screening is fairly simple, and requires a simple blood test that is covered by insurance companies, according to the consortium. The test identifies roughly 16 diseases that affect those of Ashkenazi heritage.
For Glasser, advances in genetic science came too late. Back when she had her children, there were no tests that would detect the Mucolipidosis Type-IV, a devastating neurological disease that two of her five children have today.
“We did not know we were carriers until our daughter Lauren was born,” she said. “We want people to have a screening test so that no one will ever have to go through the heartache we’ve been through.”
Carriers of a disease gene are completely healthy, but two carriers with the same disease have a 20 percent chance of passing the disease to their child during each pregnancy.
Experts surmise that the carrier rate of certain diseases is higher in the Ashkenazi population because, for religious and political reasons, the population was genetically isolated. Non-Jews are also carriers of the diseases — which include Tay-Sachs, Bloom’s Syndrome, Canavan Disease, and Gaucher’s Disease — but the frequency of occurrence is lower.
More information can be found at jgdconsortium.org.
Rabbis interested in learning more about the program may contact firstname.lastname@example.org.
©2010 Community News Group
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