Rabbinic Symposium Presented by Center for the Jewish Future Raises Awareness of Genetic Health Issues
Twenty-five percent of Ashkenazim are carriers for at least one genetic disorder—“which means that it’s not a stigma; it’s a community problem,” said Dr. Nicole Schreiber-Agus at a rabbinic symposium on genetics hosted by Yeshiva University’s Center for the Jewish Future (CJF) on Monday, December 5. “There are many options for having a healthy family,” said Agus, noting that there are also specifically Sephardic disorders.
More than 40 rabbis attended the symposium titled “Guiding Your Congregants through the Lifecycle: Halachic, Scientific, Clinical, Pastoral and Counseling Approaches to Genetic Issues.” The goal of the program was to empower rabbis to effectively and sensitively support congregants dealing with genetic health challenges. “The patient will always remember what was said by the doctor or by the rabbi,” said Rabbi Kenneth Brander, David Mitzner Dean of the CJF.
The symposium drew attention to YU’s new Program for Jewish Genetic Health (PJGH), a unique initiative that integrates the Jewish communal responsibility of YU with the clinical services, genetic education and biomedical advances of its medical school, Albert Einstein College of Medicine. The program, established to serve as a centralized resource for everything related to Jewish genetic health issues, provides education, awareness and support to communities and clergy, as well as enables all individuals to receive carrier testing for a host of Jewish genetic disorders, regardless of their financial situation. If one’s health insurance will not cover the cost of genetic testing, the PJGH will.
Agus, scientific director and program liaison of the PJGH, emphasized that couples should undergo screening for genetic diseases before each new pregnancy. “There are always more mutations being tested,” she said. “It is a rolling issue.”
Rabbi Haskel Lookstein, spiritual leader of Manhattan’s Kehilath Jeshurun, said that he raises the issue of genetic testing with all couples he meets for pre-marital counseling. However, Lookstein believes that so-called genetic incompatibility should not be a dating, engagement or marriage deal-breaker. “In my opinion, the results of that test should have absolutely no bearing on continuing that relationship,” he said.
“I think it’s hard enough today for singles to find the proper mate with whom to build a relationship and a marriage,” added Lookstein. “…You have to look for certain fundamental qualities… but I don’t think genetics should play a role in the decision.”
Rabbi Mordechai Willig, rosh reshiva at YU-affiliated Rabbi Isaac Elchanan Theological Seminary (RIETS) disagreed; he believes that if a couple discovers their genetic incompatibility before they are married, they should not continue the relationship. However, if the couple is already married, they should not get divorced over the issue.
During a panel session, several attendees voiced questions they had received from congregants regarding breaking various Shabbat laws to receive in vitro fertilization (IVF) treatment, one available option for “carrier couples” seeking to raise healthy families. “On Shabbat, many things are allowed—more than you’d expect,” said Willig in response to a question. Because each case is different, he declined to give a blanket ruling on the issue.
The symposium also featured a moving presentation by Robin Fiddle Posnack, the mother of a child with familial dysautonomia (FD), one of the more prevalent Ashkenazic genetic disorders. When Posnack was pregnant with her first child in 2000, she had tested negative for the handful of Jewish genetic diseases that individuals were being screened for. When she became pregnant again five years later, her physician did not have her screened for the additional diseases that tests had been developed for since her last pregnancy. She then gave birth to a child with FD, underscoring Agus’s insistence that women be tested before each pregnancy.
Visit YU’s Program for Jewish Genetic Health online to learn more.