For more information about Jewish genetic screening:
• Jewish Genetic Disease Consortium: jgdc.org
• Gene Testing: genetests.org
• National Society of Genetic Counselors: nsgc.org
• Gaucher Disease: ngf.org
• To locate a testing center, call the Jewish Genetic Disease Consortium at (866) 370-GENE (4363)
OAKWOOD — It’s easier than you might think to lose your genetic identity, insists Gary Frohlich.
And that loss can be deadly.
Frohlich, a certified genetic counselor employed by the Genzyme Corporation as a senior medical affairs liaison, travels the country to raise awareness about diseases that can be carried by those of German or East European Jewish descent.
He will come to town Wednesday, Oct. 14., to let audiences know that “You May Have Inherited More than Your Blue Eyes.” His lecture is being sponsored by the Jewish Genealogical Society of Dayton and Beth Abraham Synagogue’s men’s club and sisterhood organizations and will be held at the Oakwood synagogue.
“My message is get informed, know what your ethnicity is, know what the history of your family is,” said Frohlich. “If three generations ago a Jew married a non-Jew and they decided to practice Hinduism or Catholicism, they have lost their genetic identity. But potentially that can result in giving birth to a child with a genetic disease that could have been prevented.”
Ashkenazi Jewish genetic disorders (AJGD) include Gaucher, Tay-Sachs, familial dysautonomia, cystic fibrosis, Niemann-Pick and Canavan. Most common of these is Gaucher, which — if diagnosed — can now successfully be treated by a physician.
Tay-Sachs, a fatal condition in which a child will die between his third and fifth birthdays, is a heartbreak that can be avoided, said Frohlich.
“If a couple is not informed that based on their genetic background they are at risk for having a child with an Ashkenazi Jewish disorder, it’s all because the medical community or the greater Jewish community failed to inform those parents that anybody can be a carrier and that if you’re Jewish, your chance of being a carrier is one in 25. In the general population, it’s one in 300.”
For most of these genetic diseases, both the mother and father must carry the gene in order for their baby to be affected. If both parents turn out to have the mutation for the same condition, there’s a 25 percent chance they’ll have a child with a disorder, a 50 percent chance the child will carry that disorder, and a 25 person that their child will not inherit either the illness or the gene.
Frohlich advises anyone who is Jewish and planning to have a baby — even if only one parent is half-Jewish — to access information about screening and testing. The testing is simple and can be done in three ways: a blood test, a cheek brush or from a sample taken from a gargling mouth wash.
“A couple can be tested before they get married, after they are married, before they become pregnant or in the early stages of pregnancy,” he said.
He suggests couples who learn they have the genetic mutation consult with a genetic counselor.
“We don’t tell couples what to do, we just give them the options,” Frohlich said. “It’s a personal decision and some couples feel they will accept what God gives them no matter what. But there are other things that can be done, including a technique known as preimplantation genetic diagnosis.”
Patients should check with their own insurance companies to make certain their lab is covered by their particular plan.
Frohlich urges families to pass on not just the family treasures, but information about their genetic heritage as well.
“My goal is to educate people so they know whether or not their family is at risk for certain genetic disorders,” he said, “and to access screening and testing if they want to do that.”
Contact this reporter at (937) 225-2440 or MMoss@DaytonDailyNews.com.
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