By Cindy Mindell ~
STAMFORD – The Jewish Genetic Disease Consortium counts no fewer than 19 Jewish genetic diseases more common in people of Ashkenazi Jewish descent; one in five Ashkenazi Jews is a carrier for at least one of these diseases.
Among them, breast cancer has attained a high level of public awareness and engagement, especially regarding the BRCA (breast cancer) gene and genetic testing that can detect the mutation. But there are more considerations and options to be aware of.
“Living in Our Genes: Jewish Genes and Breast Cancer” will explore options and issues surrounding the disease. Co-sponsored by the United Jewish Federation (Stamford) Bureau of Jewish Education, Stamford JCC Center Women, and Stamford Hadassah, the panel will include genetic counselor Danielle Bonadies; psychologist Marni Amsellem; and breast-cancer survivors Aimee Elsner and Marlene Gatz, one of whom tested positive for the BRCA gene. The program will be held on Wednesday, Nov. 30, 9-10:30 a.m. at the Stamford JCC.
Genetic counselor Danielle Bonadies is the assistant director of the Yale Cancer Center Genetic Counseling Program Team. There are three specific mutations within the BRCA1 and BRCA2 two genes that are more common in individuals with Jewish Ashkenazi ancestry, she says.
“We all have the two genes, whose job is to provide protection against the development of specific kinds of cancer – breast, male breast, ovarian, and prostate,” she says. “When someone has a change or mutation in one of these genes, it affects the amount of protection they have, which means that the chance of their developing cancer is higher. When someone has the mutation, it’s inherited – not something they can acquire.”
The genetic predisposition to develop cancer is known as a cancer syndrome or hereditary cancer syndrome. There are between 25 and 30 hereditary cancer syndromes, Bonadies says, and while genetic testing can detect the mutation, it is important to pursue the appropriate test.
“Today, when genetics is being targeted and directed at the consumer by large laboratories – specifically, BRCA testing – it’s very important to have your personal and family history evaluated by a genetics professional to make sure you get the right testing,” Bonadies says. “Breast cancer is most widely believed to be related to the BRCA genes, but because there are also other genes linked to the disease, a genetic counselor should get three and four generations of family history.”
Genetic counselors have always taken a full family history to determine appropriate genetic testing, Bonadies says. “But what’s new is the marketing of genetic testing to the average consumer,” she says. “So now, BRCA testing is a household name, but most people don’t know about the other 25 cancer syndromes, and that’s because one consumer lab has the patent on BRCA testing.”
While beneficial to expand awareness, Bonadies says that patients then request that testing, which may be appropriate. “But they take that request to their healthcare providers, who are also being targeted by the same labs,” she says. “The healthcare providers then order the test without knowing the family history and the appropriate test.”
Joining Bonadies on the Nov. 30 panel is Marni Amsellem, a clinical psychologist who specializes in health psychology, and how psychological factors influence adherence to cancer-screening recommendations. A fellow and contractor at the National Cancer Institute (National Institutes of Health) from 2004 to 2009, Amsellem is a consultant with the Cancer Support Community, an international not-for-profit organization that provides free education and support services to cancer patients and their families. She is involved in the Mind Affects the Physical (MAP) project, a longitudinal survey and online community of breast-cancer survivors to determine ongoing needs and concerns. She also provides clinical services to cancer patients and their family members in outpatient and community settings, including Gilda’s Club in Westchester, N.Y.
“Living in Our Genes: Jewish Women and Breast Cancer:” Wednesday, Nov. 30, 9-10:30 a.m., Stamford JCC, 1035 Newfield Ave., Stamford | Info/registration: Elise Passy, Elise@ujf.org / (203) 321-1373, ext. 114