Why Screening for Jewish Genetic Diseases Matters

Caren and Jonah Weintraub knew firsthand the risks they faced when they decided to start a family. Both Caren and Jonah, who are of Ashkenazi Jewish heritage, have family members who were born with Jewish genetic diseases. So they chose to have genetic screening through a simple blood test before Caren became pregnant.

Nearly 1 in 3 Ashkenazi Jews in the United States is a carrier of at least one of 19 diseases, according to the Jewish Genetic Disease Consortium (JGDC), and Mizrachi and Sephardic Jews are also at risk.

Caren and Jonah Weintraub with their healthy daughter. Caren and Jonah Weintraub with their healthy daughter. Photo: Lori Berkowitz of Loribnow

With these statistics in mind, UJA-Federation of New York, in collaboration with the JGDC and the New York Board of Rabbis, is providing support for a clergy education program, Couples Aware.

The program trains rabbis and cantors to encourage couples and other congregants to follow the Weintraubs’ example and have screening for Jewish genetic diseases before starting a family. Since clergy often provide premarital counseling, they are well positioned to reach couples at a pivotal life-cycle moment in their lives.

“The training allows me to do more extensive counseling about screening than I did before,” says Rabbi Carie Carter, spiritual leader of the Park Slope Jewish Center. “It’s important to have this counseling because it provides a much broader perspective than most Jewish people know. Most people know about Tay-Sachs, but there’s a much wider range of diseases. People need to know the risks and what steps to take if you find out you’re a carrier.”

Only One Jewish Grandparent? Screening Is Still Important

Even if one partner has only one Jewish grandparent, that partner should consider genetic screening, according to JGDC. If both partners are carriers, there is a 1 in 4 chance of having an affected child, and a couple has multiple options to choose from depending on the disease for which they are a carrier and their own personal considerations.

“It’s important for all couples to consult a genetics counselor, who can play a critical role in the process,” adds Randy Yudenfriend Glaser, JGDC chair and a mother of two adult children who have a Jewish genetic disease. “These are tragic, fatal, horrific diseases for the family and child. I want to protect future generations from a lot of sadness and mourning, and to protect children from a painful and difficult life.”

Since 2010, Couples Aware has trained nearly 160 rabbis in the New York metropolitan area. A web-based training program is also available. Couples Aware also provides a 24-page guide that rabbis and cantors can give to couples to take to a genetics counselor for further discussion.

For Caren, the screening showed that she tested positive for one disease. The next step was to screen Jonah for that disease. His test results confirmed that he was not a carrier.

“The screening eased my concerns when I was pregnant,” Caren adds. “It eased my anxiety.”

She and Jonah are now the proud parents of a healthy baby girl.

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