The article adorning the front page of the 26 December Jewish Week, “Group Charged with ‘Playing God’ Over Genetic Testing” presents a biased representation of Rabbi Eckstein, Dor Yeshorim, medical facts and community sensitivites. In addition, the article also overlooks potential financial conflicts of interest as discussed below. Replacement of the enzyme defective in cases of severe Gaucher disease is a “medical miracle”; nevertheless, there are many complexities to carrier screening, diagnosis and treatment of the wide spectrum of mutations and diseases collectively grouped together.
The article personally attacks Rabbi Eckstein as “dissuading people from testing for Gaucher’s so not to discourage young men and women who may be carriers from marrying each other”. Let’s be clear, from the medical literature there is equipoise on whether genetic testing for Gaucher disease does more harm than good as pointed out in a recent editorial by Dr. Ernest Beutler in JAMA (volume 298:1329-31, 2007). In fact he states that, “the Israeli Medical Geneticists’ Association has recommended against Gaucher disease screening”. One of the main problems confounding medical opinion is that individuals who inherit a Gaucher's mutation from both parents are frequently asymptomatic. It has been estimated that nearly two-thirds of persons with a Gaucher disease genotype have few or very mild manifestations of the disease. So why criticize Rabbi Eckstein when most medical associations do not recommend screening for Gaucher disease?
The claim that Rabbi Eckstein “is playing God” is outrageous and factually incorrect as noted above and explained below. Dor Yeshorim provides genetic testing in a community sensitive manner allowing couples considering marriage to know whether they have a risk of parenting a child with recessive diseases increased in the Ashkenazi community. Examination of the information provided to individuals being tested through the Dor Yeshorim program clearly states that they will not be provided results. They have the choice to obtain standard genetic testing that includes pre and post counseling, if they so desire. However, the article in the Jewish Week cites critics of this procedure, although Dor Yesorim is culturally sensitive to a specific group of people who would otherwise probably not undergo testing. Moreover, a recent article from Israel by Zuckerman et al. (JAMA Sept 19, 2007) stated that, “13 children born with a Gaucher disease genotype. None required enzyme replacement therapy or were ever hospitalized”. This does not imply that all individuals with Gaucher disease genotype are disease free, but many do not have medical indications for treatment and would not benefit from learning that they have a Gaucher disease genotype.
In addition, there are the potential conflicts of interest surrounding the treatment of Gaucher disease (estimated at $200,000 per year by Zuckerman et al.) and the physicians that receive financial support from the company with a monopoly on production of the enzyme replacement therapy. This issue was recently discussed by Andrew Pollack in the March 16 2008 New York Times article, “Drug makers stay close to doctors and patients”. There is a financial incentive from some physicians to treat patients with Gaucher disease. That being said, it is undeniable that enzyme replacement has been a medical break through for patients with Gaucher disease that benefit from treatment. As noted above, it is not clear alone from genetic testing who will benefit from this expensive treatment.
Lastly, the “National Medical Expert” on the front page of the Jewish Week who charged Dor Yeshorim with withholding information does not have a single peer reviewed publication on Gaucher disease that could be found in the medical literature. In the world of academics, such as the standards at The Johns Hopkins University Medical Center where I trained as a Medical Geneticist, expertise is based on peer reviewed published articles in the medical literature. The Jewish community should expect a higher standard of expertise from the Jewish Week.
In summary, this article unfairly criticizes an upstanding member of our community and does a disservice to a sector of the Jewish world served by Dor Yeshorim. Both medical facts and potential conflicts of interest need to be presented in an unbiased manner by the Jewish Week.
Robert D. Burk, MD
Professor and Vice Chair Department of Pediatrics, Division of Medical Genetics and
Professor, Departments of Epidemiology & Population Health; Obstetrics, Gynecology & Women’s Health; and, Microbiology & Immunology
Albert Einstein College of Medicine
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