So a rabbi and a geneticist walk into a room…
It sounds like the set up to a joke, but because of the serious threat posed by Jewish genetic disorders, people from the medical and the Jewish communities are coming together to find solutions to hereditary diseases.
The Center for Jewish Genetics was founded in 1999 as a cooperative effort between the Jewish United Fund/Jewish Federation of Metropolitan Chicago and Lurie Children’s Hospital. The center focuses on providing education, support, and programs for Jewish couples that are planning for a family and may be potential carriers for Jewish genetic disorders, such as cystic fibrosis, Tay-Sachs disease, and Canavan disease, among others.
From one generation to the next
There are at least 19 disorders that have a higher frequency within the Jewish population than other ethnic groups.
“All ethnic groups have certain disorders more common to them—we call it the ‘founder effect’ in the medical community,” says Michelle Gilats, a genetic counselor with the Center. “Because our ancestors often lived in geographically isolated areas, people often married within the same ethnic groups, so certain disorders appeared within similar groups of people.”
Specifically, geneticists have found that Jews of Ashkenazi (Central or Eastern European) descent are 20 to 100 times more likely to be carriers of a genetic disorder than those of other ethnic backgrounds.
“When we talk about [these disorders], you often hear about autosomal recessive inheritance patterns, where two healthy parents are both carriers of a gene with a mutation, meaning that there is a 25 percent chance that the child will be affected,” Gilats explains. “We know there is high frequency of disorders inherited this way, so young couples should be screened to find out if they are carriers, as the gene can be carried on for generations.”
A community rallies together
Dennis Kessler, a Highland Park resident and one of the founders of the Center, did not fully understand Jewish genetic disorders until they affected his own family.
“One of my sons has dystonia, a neurological movement disorder,” Kessler says. “When I realized that it was one of the Jewish genetic disorders, I immediately thought, ‘We ought to be educating people on all of them!’ So, I assembled a group of people with a shared interest in creating a Center, with our mission being to educate the Jewish community on these diseases. After a while, we realized we should also offer testing and family planning options.”
Soon after its creation, the Center expanded from informing young, expecting couples to involving the Jewish community as a whole.
“[The Center] provides education and programming to everyone, whether it is laypeople, clergy or the medical community,” says Rabbi Aaron Melman, who has helped lead the Congregation Beth Shalom in Northbrook for the past 11 years and is on the board of directors for the Center. “I’ve started a special Shabbat once a year that addresses Jewish genetic disorders, similar to events like breast cancer awareness month. I saw it as a great opportunity to promote awareness for these diseases through synagogues across country. We want people to know where to turn to with answers to their questions.”
Developing a healthy family
Because of the Center, more than 2,000 individuals have been tested, and some of those who have been identified as carriers have been able to avoid passing on a mutated gene through techniques such as a pre-implantation genetic diagnosis (PGD). Kessler says that his own grandchildren aren’t carriers because of the PGD technique.
“We want to change Jewish history,” Kessler says. “The technology is available to get rid of these diseases, but more education and planning are necessary to make sure that a mutant gene is not passed on.”
“We’re giving people the information to make informed reproductive decisions, with the hope of helping couples have healthy children,” Gilats says. “We give them information and support if they are found positive for disease, and we give them the information necessary to make important decisions moving forward.”
Through continued research and screening programs, the Center for Jewish Genetics is paving a pathway for healthy children in the Jewish community.
Upcoming Events
Screening Program at Emmanuel Congregation, August 6, 6:30 p.m., 5959 N. Sheridan Rd., Chicago ($180 per person)
Genetic counselors from Lurie Children’s Hospital of Chicago will be on hand to provide education and screening on Jewish genetic disorders. The screening involves a blood test, and samples will be taken on site. The program includes dinner, an educational presentation and genetic screening for 18 Jewish genetic disorders. Contact Taryngluskin@juf.org to sign up.
Photo: Being a carrier is nothing to be afraid of—it just means a little planning.
