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Understanding the full medical history of the typical Ashkenazi family comes with limited information, however, with the mass amount of family loss during the Holocaust. Dr. Wendy Rubinstein, Senior Scientist at the National Institutes of Health and director of the National Institute of Health Genetic Testing Registry, believes it would be beneficial to implement population-based screening of Ashkenazi Jews, like the current system implemented in testing for Tay-Sachs.
For many Jewish families, testing for the BRCA gene can open a can of worms. Are the parents obligated to tell their children if they test positive, perhaps stirring fear in future generations? Are the children obligated to tell potential spouses about their genetic makeup, and would that discussion harm prospect marriages and expose the family to discrimination? If a woman is tested positive, should she then get a mastectomy? Would that decision hurt her self-image and quality of life? What about a woman without children: should she remove her ovaries with an oophorectomy, and lose the opportunity to build a family, a core value within the Jewish ethics system.
“I was recently consulted by someone who was tested positive for BRCA at the age of 18. At such a young age, there’s really not much to do,” Reichman said. “Now she is shouldered with the burden to tell that information to a potential spouse, and to weigh the risk assessments of just getting mammograms, versus a mastectomy. These are not simple matters.”
While Jewish law from Deuteronomy 4:15 obligates a pursuit of personal health to its fullest, stating “Watch yourselves very carefully,” other obstacles abate a clear decision on how to treat the matter. Some within the Jewish community might opt to not undergo painful and expensive surgeries, and may actively choose to withhold information from their family as to not stir any turmoil.
“There’s been a never-ending trend within the religious community to sweep things under the rug and not address problems head-on,” Wallach noted. “Not everyone is ready to address genetic mutations their family may have, and prefer to not even bring it up. Plus, not everyone tested positive for BRCA will develop cancer so some may argue there isn’t a strong case to worry.”
The JLI course outlines some options for those who receive a positive test result: individuals can choose to treat the gene with the surveillance of regular cancer screenings, prophylactic surgeries of removing the at-risk tissue such as breasts, fallopian tubes or ovaries, or undergo chemoprevention.
Ultimately, the medical genetics ethics’ teaching in the course recommend seeking genetic counselors to determine the risk assessment of every individual based on age and medical history, especially those with a family history of breast cancer.
“This course will not determine any answer as definite,” Dinerman said. “We want to make it clear that in addition to discussing the Jewish ethics, there needs to be personal discussions with doctors and geneticists.”