Screening and Information Can Prevent Jewish Genetic Diseases by CfNDY SHER
CHICAGO-There's a catch-22 in the medical community regarding screening for Jewish genetic disorders. Three decades ago, everyone in the Jewish community knew someone with a baby who suffered from Tay-Sachs disease, for instance, according to Dr. Joel Charrow, head of Clinical Genetics at Children's Memorial Hospital and a member of the executive committee of the Chicago Center for Jewish Genetic Disorders. Since then, thankfully, cases of babies born with these debilitating diseases have plummeted due to screening programs that detect carrier status of parents. In 1970, there were 35 identifiable cases of classical Jewish Tay-Sachs Disease. By 1983, the number had dropped to somewhere between two and six cases. (According to recent information, however, Tay-Sachs is once again on the rise.) As the disorders disappear from the Jewish radar, though, the illnesses are less discussed in the Jewish community. Increasingly, young Jewish newlyweds are in the dark about genetic disorders and don't have the tools to prevent the diseases from striking their own blooming families. That's where the Chicago Center for Jewish Genetic Disorders offers assistance. Karen Litwack, Director of the Center, says that knowledge is the key to prevention. The Center, created in 1999 and the only one like it in the country, acts as a voice in the Jewish community that translates medical research into accessible information for individuals and families through public education and awareness, professional education, screening and prevention programs, information and referral, and advocacy.
The Center is a cooperative effort of the Jewish Federation of Metropolitan Chicago, Children's Memorial Hospital and the Dlinois Jewish Genetic Disorders Committee, and is supported by a threeyear grant from Michael Reese Health Trust, Most physicians advocate screening for the disorders because it's vital to the health of the Jewish community, particularly the AshkenazI Jews, which is the population most susceptible to the most common Jewish genetic disorders. The diseases may affect Sephardi Jews and non-Jews, but afilict Ashkenazi Jews as much.as 20 to 100 times more often, according to the Chicago Center for Jewish Genetic Disorders. "My personal recommendation is that every Jew of reproductive age should be screened, ideally prior to first pregnancy," Dr. Charrow said, "and I recommend that both members of a couple be screened if one or both of them are Jewish." Genetic screening—which consists of a simple blood test—refers to the large-scale testing of an entire population, the Jewish population in this case. It involves testing groups of individuals to identify defective genes capable of causing hereditary conditions. Abnormal genes for certain Jewish genetic disorders—Tay-Sachs disease (the most common), followed by Canavan disease (second most common), and others like Gaucher disease, and Bloom syndrome-are silently passed down through the generations in an inheritance pattern called "autosomal recessive," according to the National Foundation for Jewish Genetic Disorders. In autosomal recessive inheritance, two copies of (Continued on page 14)
JCC 'Kid' Grows up to be Aquatics Director by CAROL KATZMAN, Editor
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When James Meyers for the Red Cross, lifeswam laps at the Jewish guard and camp counCommunity Center pool as selor. a youngster, he had no Tve'taught occupationidea he'd one day run its al safety to employees aquatics department. The and managers who needson of Jon Meyers and ed to meet OSHA stanBerta Meyers and granddards," Meyers son of Sue and David explained. "And I ran a Meyers, James was on the pool for a private associaJCC swim team as a child tion and worked in the and like so many others, private sector in EMT "hung ouif at the 'J* where "__ " ". and security." he took advantage of the . ~ "" Word of mouth and a indoor and outdoor facili. *• tip from a JCC board ties. member brought t h e :opening in the aquatics Meyers was hired a few 9 T r t-i. '"'•' months ago to manage i; • '~"''J" \ ''4. " ' \**' - .' ' - - " -'* * department to Meyers' ; the operations side of the 'VV'^& " ';••'.' >\':'T-: ' ---"attention. JCC's pools and will take "' ' " " ' Added JCC Executive JCC Aquatics Director James Meyers over the programming Director Jeff Aizenberg, piece this fall. In a recent interview with the "We're very excited to have James on our staff. He Jewish Press, Meyers spoke about his experience brings his own very high expectations to this posiand his future goals. tion and has already made a significant impact on "I started out to be a pilot," he explained, noting our Aquatics Department." his educational background at Embry Riddle "Our first priority is retraining the staff," Meyers Aeronautical University in Prescott, AZ< continued. "We want to set the standard for the It's something he still has as a goal and, in fact, Omaha area." will obtain his pilot's license in just a few days. But To encourage staff to become more proficient, the illness in the family brought him back to Omaha, JCC Aquatics Department is sponsoring a Lifeguard where he attended school at Metropolitan Competition on July 22. Staff from local city pools Community College in biology and business. and private clubs have been invited to compete in Combining his swimming experience with his categories such as backboarding, CPR, and water educational background, Meyers earned his license safety. Meyers hopes that one of the local television as an EMT (Emergency Medical Technician) and stations will be a sponsor of the event. worked in related fields as a swim coach, instructor (Continued on page 14)
Genetic Testing Available Locally by CAROL KATZMAN, Editor—— A major resource for genetic testing is available right here in. Omaha at .the University of Nebraska Medical. Center. . Through t h e Menroe-Meyers I n s t i t u t e for Genetics and Rehabilitation, the clinic provides services in genetic testing for cancer, craniofacial and neurological disorders and general genetics. Two areas of interest in the Jewish community include a special project on breast cancer and prostate cancer in the Jewish community. Testing for Tay-Sachs is also provided by UNMC. While sporadic testing has been done over the years at the request of individuals, a major group test of young couples in the Jewish community hasn't been conducted in almost 20 years. The testing itself only includes drawing blood and sending it to the National Tay-Sachs and Allied Diseases Associatioa for results. It's the preparation prior to the testing and the follow-up, if a couple is positive, that can become so time consuming. "It takes quite a few genetic counselors to provide information before the testing so couples can decide if they even -want to offiatinuej" explained Beth Conoverj a genetic counselor at.the institute. "For those who participate and test positive^ we provide ongoing counseling, often covered by health insurance.*" "The Jewish perspective on genetic, testing could be described as a signal light flashing yellow," said Rabbi Aryeh Azriel, senior rabbi of Temple Israel. "Proceed, but with caution. "Our tradition affirms that humankind was created in the image of God, and while that in no way precludes tampering with*a human being's DNA, genetic testing and engineering (can be used) as a tool for combatting genetically-based diseases." Since these diseases carry a one-in-four chance of appearing in pregnancy if both parents are carriers, a couple has serious choices to make if they want to have children. Options include: adoption, invitro fertilization (from a donor who has not tested positive for Tay-Sachs or one of the other so called "Jewish genetic diseases"), or using amniocentesis early in pregnancy to determine if the fetus has been affected. Intermarried couples are not immune to these diseases, either. "While Tay-Sachs may have a higher incidence among Ashkenazi Jews, it, like other so-called Jewish genetic diseases, can also be found among the general population. According to Beth Israel's Rabbi Howard Kutner, the Omaha Board of Rabbis met recently with Dr. Edward Cohn and Toba Cohen of Boys Town National Research Hospital regarding the gene DFNBI, associated with childhood hearing loss and which has a high incidence among Ashkenazi Jews. While opinions do vary, Omaha-area rabbis hope that young Jewish couples will involve them in making these serious decisions. {Continued on page 14)
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