New York – 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.
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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
the bad people in the community will continue to slander rabbi ekstein but we all know the truth. may the rabbi continue in his avodas hakodesh.
H e is doing the right thing by not giving out the details of this disorder!!!
Why bother with facts if we can destroy someone that has contributed something that the whole community benifits. Rabbi Eckstien hold your head up high the nisht heimshe yiddin are after you so you must be doing the ratzon hashem
no one is focing pepole to do this test. if anyone wants to do more deatled tests they are welcome to it. why blame Rabii Eckstein? this is just jelousy by the jewish week. that the frum worl has such an efichent and clean cut organiztion
I commend Rabbi Eckstein. He is a man who devoted his life to help the tzibur, and it is sad that other “heimishe” yidden can attack him like this. May Rabbi Eckstein continue his avodos hakodesh and may Ha-Shem repay him. I feel that he is correct in his position on Gaucher disease.
Kol Hakovod! It is about time that we frum jews stuck up for each other. Rabbi Eckstein provides a great service if you do not want you are not forced to use the service. However if you use the service you have to abide by its rules. In todays society people think they have every thing coming to them. They believe there should be no rules and regulations. That is fine if you are running the show. However Rabbi Eckstein is running the show at Dor Yeshorim and doing a great job at it. Chazak Vematz! Do not give in. And Yasher Koach for saving my family from disaster
Rabbi Eckstein – Chazak Chazak Vnischazeik!!
You created an outstanding organization that does chesed for the entire klal in many, many ways. May Hadadosh Baruch Hu bentch you with kol tuv.
Kol Hacovod to Rabbi Eckstein, Keep up your good work, and dont be affrraid of any one.
However the same as you did get back with a opnion letter from a Medical Proffesional, you should just as well get back to the public with a “LEGAL” opnion from a Law Firm, because in this crazy world out there with quit some people upset on you, someone one day meight go after you legaly. “Hachochem Einov Brosho”
Why are we surprised? JW has been on a campaign to publicly embarrass the frum community at every possible opportunity. They quote people without expertise as if they are experts, they misquote or quote out of context, they scan other media for the slightest imperfection among the frum community, and they always find something somewhere. Yes, JW, the frum community has its issues. However, living as a frum Yid beats whatever you and your ilk claim is better. I will always seek the Torah way, and nothing your rag ever published will sway me from that. Even complaints against individuals that are doing wrong things. JW – keep up your anti-orthodox campaigns. They are all easy to spot.
What can you expect from the Jewish WEAK? What did they ever do to help another Jew? The Week should become weak-er and weaker, and yidden become stronger and healthier.
As someone with Gaucher Disease I just want to point out that I feel u are all missing the point.. a possible senario would be a seemingly healthy person walks into dor yeshorim and got tested for gaucher when this was routine, dor yeshorim has knowledge that this person is not only a carrier but actually has this disease.. this person then goes on to get married.. let’s say it’s a woman when she gets pregnant her platlets plummet and her ob says ‘i think u may have lukemia lets get this figured out’ the average time from onset of systems, whih in this case is a decreased platlet count till diagnosis is 7 years… 7 years this woman could be walking around in pain generally feeling tired without any idea what is wrong with her.. and to top it off her bbones could be experiancing permanent damage all because dor yesharim didn’t tell her 10 years ago that yes she has thgis disease and if monitored properly and possibly treated she may never have a single symptom…
and yes I know personally people this happened to I know several women who while pregnant were told ‘I think u may have cancer’
this is not a simple nothing cold.. this is a major illness that needs some attention in the frum community.. based on statistics 1 in 450 ashkanazi jews actually have this disease and most have no idea..
However that is not to say I can’t see DY position.. if they stat telling seemingly healthy people that they are sick people will stop coming to them.. it’s time we as a community took out our collective heads out of the sand and did something about the stigmas in our communities…
and lastly that the gene therapy takes years and most are tested in there 17-18 age that gives us 1-2 years that is not enough
tell rabbi ekstein that finding only a single doctor to defend him looks rediculous. if u are tring to make a point about the medical field you need to put out a signed leter with a whole slew of many doctors who practice genetics. just my two cents
Jewish Week is the newspaper of the secular Jewish federations all over the U.S. They present the viewpoints of those who despise the Torah and Orthodox Judaism. It is just business as usual when they seek to tear down a Tzaddik who is dedicated to serving the Orthodox Jewish community.
oh please. Another spin artist twisting the story into bashing the jewish week. Bottom line is that dor yeshorim is not perfect. So why shmear and malign a good doctor like dr. Ditchek? He is also a professor at a prestigious med school. To question his mdical expertise idiotic and immature.
some of us have been smart enough to never patronize the dy fad whenever it came around to our schools. Its a far from perfect system or solution.
The issue with secrecy is that families expect potential shidduchim to have a clearance from Dor Yeshorim. The problem is that Dor Yesharim won’t give that clearance unless they themselves did the test. Therefore, if a family has 10 kids, all from the same parents and all with the same genes, then they still have to test all 10, even after one kid has been tested as free of genetic markers.
Dor Yeshorim might have good reasons for this, but they are sociological (having to do with people’s fears) and not medical.
Wonder how you would feel if Chas Vesholom one of your nearest & dearest would be found to be suffering with Gauchers. Would you feel the same way?
“Therefore, if a family has 10 kids, all from the same parents and all with the same genes, then they still have to test all 10, even after one kid has been tested as free of genetic markers”
except that kids never have the same genes – that’s the whole point! one child could be “free” even if both parents are carriers (a carrier by definition carries a “normal” gene too, so the kid could just have gotten normals from both parents…). Of course, one could test both parents and if they aren’t carriers for anything then the kids won’t be either, but the point of DY seems to be that it would be problematic to have that info out there (eg, many couples will find that at least one of them is carrying something, and then they will have to have kids individually tested, and also they may be subject to stigma based on the sort of lack of knowledge of genetics demonstrated in the original quote…)
It is true that doing it anonymously increases the number of tests tha have to be done, but that is the tradeoff that has to be made to keep it secret…
Kol Hacovod to Rabbi Eckstein, Keep up your good work, and dont be affraid of any one
never update your medical knowledge
great rabbanim never have anything new to learn.
Oh boy, 18, you are still living in the dark ages. When I was graduating high school over 20 years ago, my school arranged for my class to be tested. This was with the blessings of the Gedolim of the time (dare I say they were of a different caliber than today’s Gedolim) and when a shidduch looked promising, the assigned numbers were referred to Dor Yeshorim to look for possible genetic illness. I am very thankful to Rabbi Ekstein for his forsight and because of the absolute tragedy he and his wife suffered while losing several chldren to Tay Sachs, he devoted himself to the Rabbim and we should all applaud him.
Dr Burk deserves credit to stick up for Rabbi Eckstein, and so does The Jewish Week for publishing it.
“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?. “
What does deciding whether to screen for Gaucher’s have to do with deciding whether to tell people who have Gaucher’s that they have it? Nothing! I guess they don’t teach logic at Hopkins.
This sounds like a red herring:
“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?. “
We aren’t discussing the merits of screening, we are discussing whether to inform ALREADY screened individuals of their medical status.
This boils down to a simple question of morals and ehtics. Dor Yeshorim is all about Shidduchim, first and foremost. if it was a healthcare agency, it would give all the information from such tests, not simply blind compatability with no other information at all.
On that note, i once heard a very good person who had a tremendous impact on the community during his short life suffering a terrible disease rail against advocates of dor yeshorim that they were insisting that he had no right to exist. for all the good he did in this world in his short life, no one could imagine if his parents had never gotten married and had their wonderful family (if such a gimick as DY existed back then). but that is a rist taken with this DY thing, and most people who have a disease in their families wouldnt trade it for anything in the world. this is something to think about. (Plus there are other ways to deal with matters once you find out that someone is indeed a carrier, and the numbers not matching should not have to be the final word if a couple wants to get married).
The mere fact that not disclosing gauchers for fear of shidduch stigma is an issue, is something that should maybe be corrected and fixed about our crazy community to begin with.
if you know that your parents are not carriers, then you arent either. always ask before going ahead with an unnecessary test.
Dr. Burk is a world-renowned genetics researcher. He is also an Orthodox Jew and serves as the gabbai for the 2pm minchah minyan that I attend Monday through Thursday at the Albert Einstein College of Medicine. (If you are ever in the East Bronx on a weekday afternoon, please come join us in prayer!)
Look at that. A doctor from YESHIVA UNIVERSITY’S MEDICAL SCHOOL is defending a chusid. I guess that’s not worth mentioning.
Dr. Ditchek is a good frum Doctor who takes are of some children with these diseases. What we have here is a difference of opinion. not one side of something smearing a different side of soemthing. our entire judaism is predicated on difference of opinion (tanoim, amoroim mishna gemara)…