'Knowledge is power'

When Rabbi Aaron Melman of Congregation Beth Shalom in Northbrook learned that both he and his soon-to-be wife, Elisa Rotman, were Tay-Sachs disease carriers, he was shocked, confused, and concerned.

At the time, Melman was living in New York and attending rabbinical school. Since he was screened at a synagogue in his hometown of Toronto, he received his results via mail.

“That was just about the worst way for someone to find out sensitive information, whether it’s good or bad,” Melman recalled. “Someone should help you understand and digest the news, which is part of the role of genetic counselors. We didn’t really know what to do with the news. What did this mean for having kids? We didn’t know where to go with that information.”

Once Melman moved to Chicago, he connected with geneticists at Northwestern University, but quickly realized that health insurance would likely not cover procedures like IVF. He and his wife decided “to take a chance and deal with the results.” Once pregnant, testing as early as 10 weeks through Chorionic Villus Sampling was possible. Two out of four of his wife’s pregnancies tested positive for Tay-Sachs.

“Pregnancies one and three ended in termination,” Melman said. “We spent a lot of time understanding the halachic material and sources on terminating a pregnancy based on this potential challenge of ours. They were tough choices, because we were left with the thoughts of what might be- hopes, dreams, and aspirations.”

Today, Melman has two children, a 19-year-old son and 15-year-old daughter. Given his role as a rabbi and his own personal experience, he has been involved in a variety of capacities at the Norton & Elaine Sarnoff Center for Jewish Genetics. He cites his family’s story as a main motivation for getting involved.

Helping those with experiences like the Melmans’ is exactly why the Sarnoff Center was created. Today, it provides personal connection and resources to individuals and couples struggling with difficult decisions, while also providing the most current gold standard information. A genetic counselor is on staff, a service that often takes much longer to access through a typical medical practice.

“I have been able to put the pain that I have felt into my work at the Sarnoff Center over the course of two decades,” Melman, a Sarnoff Center board member, and its treasurer, said. “I have also been able to use my knowledge and experience to help other couples going through similar things.”

The Sarnoff Center’s carrier screening program provides affordable, accessible, high-quality prenatal screening services for Jewish and interfaith families in Illinois. “After a brief hiatus, we are proud that our screening program has relaunched as a key resource to our local Jewish community members,” said Eve Kleinerman, director of the Sarnoff Center. “Access to testing should never be a barrier to a couple considering testing.”

Ease and accessibility are paramount for the Sarnoff Center. The current screen panel is available for a pan-ethnic panel of some 100 disorders more commonly seen in people of Jewish descent, and potentially 226 conditions in total.

Carrier screening has significantly evolved over the past several years, according to Scott Weissman, the genetic counselor at the Sarnoff Center. “There has been a switch, from ethnicity-based testing, to screening everyone for a variety of conditions. People can be carriers for any condition, regardless of their ethnic background,” he said.

Genetic testing has changed, as well.

“I think there is a greater acceptance in the healthcare community for referring patients to genetic testing,” Weissman explained. “There is also a higher rate of individuals who want the testing. There was concern about insurance discrimination, and now there are laws that offer protection against that. The cost of genetic testing has significantly dropped, too.”

“Knowledge is power,” Melman added. “The more knowledge that we can pass on to people, the more knowledge they have to be able to make informed and proper decisions.”

The Norton & Elaine Sarnoff Center for Jewish Genetics is a supporting foundation of the Jewish United Fund, and is supported in part by the Michael Reese Health Trust.

Learn more at jewishgenetics.org