Medical Ethics Program Takes Aim at BRCA 'Jewish' Gene Mutation
After actress Angelina Jolie announced her decision to have a double mastectomy back in May, it didn’t take long for synagogues and Shabbat tables in the Jewish community to buzz with a new conversation.
Her choice to have her breasts surgically removed touched a raw nerve within the community: while one in every 800 individuals is susceptible to the BRCA breast cancer gene, one in 40 Ashkenazi Jews test positive for it.
Jolie had tested positive for the BRCA1 gene, a genetic mutation with an 87% risk of leading to breast cancer, and a 50% risk of developing ovarian cancer. Since her family had a history of breast cancer, with her mother losing the battle at the age of 56, she made the difficult decision to minimize the risk.
The sudden awareness of the Jewish genetic makeup now has the community wondering if they, too, should get tested, and, if tested positive, what are some of the decisions they might have to face.
The Rohr Jewish Learning Institute, a Chabad-affiliated Brooklyn-based adult program for continuing education, aims to bring answers to some of those questions. Starting Sunday, October 27, JLI is launching a new education program in 362 neighborhoods around the world discussing Jewish medical ethics. The first of the six-week course will tackle the issues surrounding the BRCA gene: addressing the heightened risks of inherited breast and ovarian cancer within the Jewish community and discussing the religious obligations behind screening for mutations and seeking preventative measures.
BRCA1 and BRCA2 are human genes belonging to the tumor suppressors class. Normally, the genes ensure the DNA of the cell is stable and they help prevent uncontrolled cell growth. Mutations of these genes, however, are linked to the development of hereditary cancers. According to the Journal of Medical Genetics, those tested positive for the BRCA1 gene may develop cervical, uterine, pancreatic, and colon cancer— as well as the more common causes of the mutation, breast and ovarian cancer. Those tested positive with the BRCA2 mutation may have increased risk of developing pancreatic, stomach, gallbladder and bile duct cancer. Women who inherit the harmful BRCA gene are about five times more likely to develop breast cancer than women who don’t have the mutation, the National Cancer Institute explains.
There are several methods to detect the BRCA mutation, and these tests, which can cost thousands of dollars, are not necessarily covered by health insurance. Testing includes searching for changes in the BRCA1 and BRCA2 DNA, as well as searching for a change in proteins those genes produce with a sample of a blood test.
The BRCA gene is commonly found amongst Ashkenazi Jews as a result of the population living in small, insular communities throughout history. Higher results of genetic mutation garner amongst tight knit groups that marry into each other, according to the Program for Jewish Genetic Health. So while the Ashkenazi Jewish community is prone to mutations like BRCA and Tay-Sachs disease, other close-knit populations like African-Americans can carry sickle cell disease, and beta thalassemia is found within the Mediterranean population. So far, three different mutations of the BRCA gene have been found amongst Ashkenazi Jews.
The mortality rate varies depending on the types of cancer. The five-year survival rate for breast cancer is at 90 percent, while the five-year survival rate for ovarian ranges from 20 to 30 percent, according to Chani Wiesman Berliant, a genetic counselor with the Program for Jewish Genetic Health.
“As a woman, there is so much saturated information out there, and this topic is way too complex to get all the options from one single news article,” said Mindy Wallach, the director of continuing education at the JLI. “Right now, there is nothing really that gives Jewish women answers: do I have to get tested if I’m an Ashkenazi Jew, regardless of my family history with breast cancer? What about if I’m tested positive, am I automatically going to have to get surgery?”
The first JLI session on BRCA will be free to the public in commemoration of National Breast Cancer Awareness month. Co-sponsored by the Susan B. Komen Foundation, representatives from Komen will attend the programs in several cities to answer questions and provide options for cancer treatments. The other 5 sessions in the course cover topics of abortion, end-of-life care, organ donations, autopsies, and uterus transplants.
“We create programs based on the needs of the community, and this is a severe topic circulating within Jewish homes,” said Rabbi Mordechai Dinerman, the course’s editor. “This course will help people think about what it really means to be an Ashkenazi woman facing the BRCA gene— as well as Ashkenazi men, since men, while not as common as women, are disposed to the BRCA gene as well.”
Sitting at large conference table with JLI representatives in their Crown Heights headquarters one fall afternoon, Dinerman said his team spent many months consulting with professional genetic counselors to ensure the content of the course was factual, expansive, and up-to-date.
The program fuses commentary of Jewish sources like the Talmud and Maimonides with scientific research and statistics from sources including the Journal of the National Cancer Institute, the New England Journal of Medicine, and the Journal of Clinical Oncology.
“Given the unique fact this gene is strongly associated with the Jewish community, it behooves us to know what our own tradition has to say about the matter,” said Dr Edward Reichman, a professor of clinical emergency medicine at the Albert Einstein College of Medicine. Reichman assisted JLI in editing the course. “There’s a great deal of commentary within Jewish law that helps us address health issues, like what we can and can’t do to our bodies. For some, its comforting to return to their faith for answers.”
Some of the questions addressed in the JLI BRCA course might appear to have obvious answers, but the topic of medical necessities within the Jewish community— especially the Orthodox community— is a rather sensitive issue.
The case for testing for BRCA within the Ashkenazi Jewish community comes with debate. Mary Claire King— the woman who first found the BRCA mutation in 1990— holds the position that all Ashkenazi Jews should be tested. Opinions like those from the National Comprehensive Cancer Network, on the other hand, suggest women should be tested if the BRCA gene already runs in the family.
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.”