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鈥斺渨hich means that it鈥檚 not a stigma; it鈥檚 a community problem,鈥 said Dr. Nicole Schreiber-Agus at a rabbinic symposium on genetics hosted by 黑料社 All鈥檚 (CJF) on Monday, December 5. 鈥淭here are many options for having a healthy family,鈥 said Agus, noting that there are also specifically Sephardic disorders.
More than 40 rabbis attended the symposium titled 鈥淕uiding Your Congregants through the Lifecycle: Halachic, Scientific, Clinical, Pastoral and Counseling Approaches to Genetic Issues.鈥 The goal of the program was to empower rabbis to effectively and sensitively support congregants dealing with genetic health challenges. 鈥淭he patient will always remember what was said by the doctor or by the rabbi,鈥 said Rabbi Kenneth Brander, David Mitzner Dean of the CJF.
The symposium drew attention to YU鈥檚 new (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, . 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鈥檚 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. 鈥淭here are always more mutations being tested,鈥 she said. 鈥淚t is a rolling issue.鈥
Rabbi Haskel Lookstein, spiritual leader of Manhattan鈥檚 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. 鈥淚n my opinion, the results of that test should have absolutely no bearing on continuing that relationship,鈥 he said.
鈥淚 think it鈥檚 hard enough today for singles to find the proper mate with whom to build a relationship and a marriage,鈥 added Lookstein. 鈥...You have to look for certain fundamental qualities... but I don鈥檛 think genetics should play a role in the decision.鈥
Rabbi Mordechai Willig, rosh reshiva at YU-affiliated (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 鈥渃arrier couples鈥 seeking to raise healthy families. 鈥淥n Shabbat, many things are allowed鈥攎ore than you鈥檇 expect,鈥 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鈥檚 insistence that women be tested before each pregnancy.
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