On Saturday night, March 5, the Adult Education Committee of Congregation Bnai Yeshurun, headed by Clive Lipshitz, provided the community with a special opportunity to hear from a leading expert in the field of Jewish genetics about genetic testing as it relates to the Jewish community.
When Dr. Nicole Schreiber-Agus, a geneticist, was experiencing her own pregnancy challenges, she turned to her synagogue rabbi, Rabbi Haskel Lookstein, who counseled her to utilize what she had learned to help others. This “trigger” moment shifted Agus’ focus from “mouse” genetics to Jewish genetics. She quoted a passage from the Yom Kippur liturgy: “Hashem, before I was formed I was unworthy, and now that I have been formed, it is as if I had not been formed.” Agus cited Rav Kook who taught that “we are all born to a specific time and place to perform a specific mission. Providing guidance to the community and mentoring to the next generation of genetic professionals is our program’s mission. But the more we know, the more we realize how much we really do not know and have yet to discover or understand.”
Ten years later, Agus serves as the director of the Albert Einstein/Montefiore Medical Center Program for Jewish Health as well as an assistant professor of Genetics and of Obstetrics, Gynecology and Women’s Health at Einstein. In addition, she is the founder and co-developer of MyJewishGeneticHeath.com, a Jewish genetics online education series. “Our goal,” says Agus, “is to protect the individual, the Jewish community and its future generations, to minimize disease and to listen and respond to medical issues affecting this community.”
Individuals need to do thorough research of their immediate and extended families to determine pedigrees, family health histories and genetics. “As our community has spread out worldwide, we have maintained genetic threads of a larger Jewish tapestry. These shared genetic elements can harbor mutations which may be dangerous to our offspring or to us.”
Agus’ advocates for a preconception carrier testing model of “open testing,” done while the individual is single, involved in a serious relationship,engaged to be married or even married but not yet expecting. For a couple, the optimum time to be tested is before contemplating a pregnancy. Genetic testing will provide baseline results which can then be updated as more diseases are added to the panel. If the couple both prove to be carriers, there are many options for building healthy families to be discussed during genetic counseling. As Rav Feinstein wisely warned many years ago, “Don’t bury your heads in the sand.”
Beyond testing for diseases that could affect offspring of carrier couples, other genetic diseases most impacting our community are those caused by changes in the BRCA-1 or BRCA-2 genes which can harbor three common changes in Ashkenazi Jews. These changes may result in increased incidences of breast and ovarian cancer, pancreatic cancer and certain types of prostate cancer and melanoma. Roughly one in 40 Ashkenazi (Central/Eastern European) Jews will have a BRCA mutation that will put them and members of their families at increased risk for certain cancers. This is in contrast to the one in 400 in the general population, hence the great concern and concentration on this gene. Especially if there is a family history of those cancer types, both men and women should meet with genetic professionals and explore available testing options.
According to Agus, the key issue to be considered when dealing with Jewish genetic diseases is that “genetics is not necessarily destiny.” Through genetic testing, frequent screening, positive lifestyle changes and risk-reducing medical procedures, cancer sometimes can be controlled. Another crucial issue to address is the stigma our community attached to these genetic proclivities. We must remember that every family may be dealing with physical and mental health issues and that labeling and stigmatizing are not in keeping with our Jewish societal values.
Dr. Agus invites the community to join her on MyJewishGeneticHealth.com, the program’s online learning site, which has explored such issues as BRCA, Parkinson’s and Crohn’s and colitis among other diseases. Other relevant websites are einstein.yu.edu/genetichealth, PJGHtesting.com, BRCAcommunity.com and jewishgenetichealth.wordpress.com.
By Pearl Markovitz
