Brooklynl, NY – A national medical expert charged this week that the head of the leading organization screening for Jewish genetic diseases is “playing God” by withholding information from people who have tested positive for Gaucher’s disease, a serious and often painful illness that effects one in 450 to 500 Ashkenazim, making it the most common of Jewish genetic diseases.
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Dr. Stuart Ditchek, director of the Jewish Genetic Diseases Consortium, a nonprofit organization founded two years ago to increase education and awareness, and encourage genetic testing, told The Jewish Week that Rabbi Joseph Eckstein, the founder and director of Dor Yeshorim (Generation of the Righteous), the largest screening program of its kind, dissuades people from testing for Gaucher’s so as not to discourage young men and women who may be carriers from marrying each other.
What’s more, Ditchek charges that Rabbi Eckstein has acknowledged that he has not informed people who have tested positive for Gaucher’s that they have the disease.
“He is playing God,” Ditchek said of Rabbi Eckstein, asserting that there is no ethical or halachic basis for depriving such medical information from a patient.
Due to medical advances over the last two decades, enzyme replacement therapy has proven quite successful in treating and controlling Gaucher, with the best results occurring when it is detected before the patient reaches his or her late teens.
“Several medical experts and I have met with the rabbi and shown him the research, and explained that we can save these people from a life of suffering,” said Ditchek, a Brooklyn-based pediatrician. “We told him we know he has the information and that he needs to inform these people [of the results], but he resisted.”
Dor Yeshorim regularly tests some 17,000 people a year, almost exclusively in the Orthodox community here, in Israel and Europe, for a “panel” of nine genetic diseases, including Tay-Sachs and Familial Dysautonomia. The group used to include Gaucher’s, but now only tests for it “by request only,” according to its literature.
According to Ditchek, Rabbi Eckstein has said that he has blood samples from more than 100 people his organization tested more than 15 years ago, and whose results were positive for Gaucher’s.
Contacted by The Jewish Week, Rabbi Eckstein denied that assertion, but said, “We don’t believe it is right to say ‘don’t get married because of Gaucher’s.’” He added that “years ago it was serious enough to test for it because people could die. Now that there is treatment for it, we feel uncomfortable telling young people [to be tested]. I believe it is a disservice to tell them not to get married.”
He declined a full interview unless given the right to review and “veto” the story if it did not meet his approval. He said he mistrusted the media because it is prone to inaccuracy, particularly on “delicate” issues like this.
Rabbi Eckstein is no stranger to controversy. The pioneer in screening programs for Jewish genetic diseases, he founded his organization in1983, dedicated to the elimination of Tay-Sachs — the rabbi lost four children to the disease — and the promotion of healthy marriages among chasidim, later expanded to the wider Orthodox community.
According to the organization’s literature, Dor Yeshorim was established “to provide protection from predominantly Jewish genetic diseases, while safeguarding individuals from the psychological stigma of carrier status knowledge.”
Most participants in the screening program are young couples considering marriage. They are tested through Dor Yeshorim and receive an identification number. They later call a hotline and are simply told whether or not they are compatible, based on the results of the screening. If both the man and woman are carriers of the same disease they are considered incompatible.
Dor Yeshorim is widely credited for helping to virtually eliminate new cases of Tay-Sachs from the community, but some critics oppose the organization’s methods on moral grounds, primarily because it does not notify participants who test positive as to what disease they are carriers of or refer them for evaluation and treatment.
The medical data on Gaucher’s is clear that early detection and treatment can help a person avoid a life of increasing misery.
Dr. John Barranger, an international expert in the field from the University of Pittsburgh who has done groundbreaking work on Gaucher’s, said “the disease is slowly progressive. It is highly treatable through enzyme therapy and, when found at a young age, a person can be disease-free.” If not treated, though, “the ravages of the disease can lead to enlarged liver and spleen, bone marrow failure and erosion of the skeleton,” and “can cause early death.”
He said it was standard practice in the medical field for screening agencies to provide pre-test and post-test counseling, and for carriers to be given detailed information, including the risks to themselves and to having children.
Dr. Neil Weinreb, another world expert on Gaucher’s and author of data on the benefits of prompt treatment, noted that Rabbi Eckstein’s style in confidential testing is “unique” in its “paternalistic” approach to clients.
Weinreb said that some people with Gaucher’s could live a full life disease-free while others can be “seriously affected.
“There is no question that if someone has the disease, he or she has the potential” for becoming seriously ill at some point and should be informed.
“As a physician,” Weinreb added, “I feel people have the right to know and make decisions, based on ethical and halachic grounds.”
He said he had heard the argument that if a person with Gaucher’s has symptoms, he will go to the doctor and be diagnosed, so why inform such a person beforehand? But Weinreb dismissed such logic, asserting that besides being immoral, it is medically unsound because early detection is most effective and because some people could be misdiagnosed. “It can be fatal,” he said.
But Dr. Edwin Kolodny, medical director of Dor Yeshorim, said it was unfair to accuse Rabbi Eckstein of “playing God,” noting that the focus of the anonymous screening programs is to determine, if two specific individuals were to marry, whether they would be at risk of having children with a severe, incurable disease, and to prevent the stigmatization of families.
“A person is not told if he or she is a carrier because that is not relevant to the program, which is not obligated to disclose disease information,” said Kolodny, who chairs the department of neurology at NYU Medical Center. “It is designed to let people know they can reproduce without fear, and to avoid any stigma in the community.”
He did acknowledge that not informing clients that they have Gaucher’s “does raise an ethical question,” pitting a doctor’s responsibility to provide medical information against Dor Yeshorim’s conviction that pregnancies should not be terminated in the case of Gaucher’s. That is because in most cases it does not create a significant medical problem, he said, with many people living healthy lives and never knowing they have Gaucher’s. And if there is a problem, he added, it can be diagnosed and treated, though he noted that the disease often is misdiagnosed.
Kolodny also pointed out that some experts believe people with Gaucher’s have an intellectual advantage. (For example, Rabbi Adin Steinsaltz, considered a genius by many for his monumental work in translating the Talmud into Hebrew, has been treated for Gaucher’s.)
But critics in the medical community insist that Dor Yeshorim must change its policy and inform clients found to have Gaucher.
“Hiding behind confidentiality is just not appropriate,” said Ditchek of the Jewish Genetic Diseases Consortium. “You have to break your rule when not to do so may relegate a person to a more painful life,” or even shorten it.
Ironically, the tagline on Dor Yeshorim’s brochure, recruiting for its genetic screening test, states: “You can prevent a lifetime of suffering.” That’s exactly what Ditchek is saying, in effect, to Rabbi Eckstein.
I find the tone of this article not fair and is condescending to this man who has done so much to eliminate devastating disease from the Jewish world.
Not surprising for the Jewish Week to attack a frum person who has done so much good because they don’t agree with everything they do.
I do hope that they do not inflict harm on this worthy organization and that we do not see another witch-hunt a la Rubashkin.
Participant value the privacy and only agreed to be tested anonymously for the purpose of marriage compatibility. Anyone concerned can have other testing done.
I didn’t trust these guys…my wife and I paid private doctors to screen us. Don’t trust Jewish ayotollahs who want to control how you think!!!
It’s a tough position to be in. If he starts telling people they have Gaucher people will stop coming.. They will think ‘I was healthy till DY told me I am sick, now I will never get married’ by not telling people, if they do start getting sick later or produce a child with Gaucher it can take forever to get a correct diagnosis. They average Gaucher patient who presents with symptoms takes 7 years to get a correct diagnosis…
I think that people ought to know that Rabbi Ekstien has made it his life mission to do this genetic testing. He has come up against a lot of critics but has always emerged victorious. One reasoning for the confidentiality is that many people do not really understand the intricacies of genetics and were they to know that a prospective boy/girl is a carrier they would not marry them. In most genetic diseases it takes two parents that have a child for the child to either be a carrier or affected by disease. Any disease that is transferred to children genetically from one parent is not tested for by dor yesharim. I think in this case with gauchers disease, Rabbi Ekstien should give the people an opportunity to take the test anonymously or they can go to a lab that gives you the results. “Dor yesharim” was created with the idea of anonymity. Anyone who does not like it should go to a private lab.
Anyone who knows rabbi ekstien can vouch for him that he does everything leshem shomayim and he follows “das torah”. The rabbonim that are involved in dor yesharim have a very good understanding of the community’s needs and if you don’t like it you have the option of testing privately. Besides dor yesharim is cheap compared to a private lab.
If you want to have more information about your future mate you could use a private lab. You might as well check for cancer genes too….
By testing for too much, we try to play G-D.
Dr. Ditchek is an expert. He is the Director of the Camp SImcha Special program which he started for children with such diseases.
Moisheleh Holtzberg has two siblings (one died) with Tay Sachs
Maybe the organization should tell people that Gaucher’s is a treatable disease and encourage them to get tested and tell them where they should go to do this. I understand that his organization has a specific purpose. It seems that in Israel genetic testing is common. Does anyone know what they do there?
I forgot to mention that Dr. Ditchek is a very good doctor and is entitled to his opinion. I believe that Dr. Ditchek’s opinion is much closer to rabbi Ekstien’s that the Jewish week makes it out to be. They have the tendency to scorn at everything good done by an ultra orthodox group.
As I recall when I got tested before I got engaged, they did not ask me any personal information not even my name, I only got a number and as for as they know I was only a number to them, in case I would loose the number they I would have to be re-tested, now how can they contact me if they don’t know who belongs to which number, I appreciate this privacy
As a medical professional, I can state that this public policy issue is clearly a decision for Gedolei Poskim, and Gedolim were involved in the decision to set up Dor Yeshorim and publicize it. This is not for a pediatrician to decide.
I think it pathetic that a sideliner argues with the person doing the work. Dr. Ditchek can get off his butt and start his own agency. We frum Yidden trust Dor Yeshorim because we know that it is guided by Gedolei HaDor. We trust it because it was started and is run from a purely altruistic place – with utmost discretion, confidentiality — and complete awareness of the weightiness of “passuling” a Shidduch. There is enough room on the playing field for Dr. Ditchek’s new organization, but the Chutzpah of telling a do-gooder how you think they should do their good is part and parcel of our generation’s issues.
i really do not get it! this is a private organization of other ppl do not like the way it is being run then by all means open their own org and see how hard it is to run and then open their mouth!!
Rabbi Eckstein has done a tremendous chesed to the Jewish community, and we ought to be grateful to him.
Having said this, I will say that I strongly disagree with the Dor Yeshorim modus operandi. It is not for me. I want to know what my medical situation is, and what my spouse’s medical situation is. Therefore, I did not go to DY for my pre-marital testing. My fiancee (now my wife) and I went to the lab of a large medical facility, and learned about our genetic issues.
But for many, the DY system founded by Rabbi Eckstein is just the right thing. There are other issues that come into play in a shidduch situation, not the least of which is stigmatization within the community. Rabbi Eckstein’s system deals very effectively with the stigmatization issues because DY withholds information.
DY is quite up front about what it is and how it operates. If DY is for you, then by all means go with it! If, on the other hand, DY is not for you, then have yourself and your prospective spouse tested elsewhere.
[BTW, my wife and I each have a sister who had, before our engagement, given birth to a retarded child. B”H, none of our 3 children have that problem.].
I can’t trust The Jewish Week. If any1 wants to test for a particular gene they can go to a lab on their own. Nobody is being forced to take the DY test. this is their policy.
I don’t get this ethics BS is this the same medical ethics that play g-d all the time like deciding when its time to pull the plug on the Brody kid or the ethics that believe that you tell a patient there is no hope?
Why don’t they simply give the option of being tested for Gaucher’s to whomever is being screened (for all the other diseases) and then further give each individual the OPTION of being notified if positive?
I cannot imagine why Dor Yeshorim would deny any individual that information.
It’s a jewish week article
of course it is tainted and distorted.
I wish sombody can get the facts and straighten this possible lible and slander of Rabbi Eckstien.
As for jewish week anything they report about a frum person should be regarded with less than a grain of salt.
Eckstein has no obligation to do anything. It’s a free country, and each person is responsible for him/herself. If you personally want more genetic testing than Dor Yeshorim offers, go get it yourself (for a steep fee).
Dr. Ditchek actually suggested to Rabbi Eckstein to go to Daas Torah and he refused. Dr. Ditchek did actually consult with one of the gedolei hador who confirmed that witholding this diagnosis is assur and should not continue. Exceptions should always be available to save lives.
Just wait untill someone gets hurt, and will sue and shut down the Dor Yeshurim Office.
Let Rabbi Ekcstein bentover from his “AKSHUNES” and he will continue to save lives and family’s
It took me 2 years of running between NY’s best doctors, till I was diagnosed with Gaucher, by taking a bone marrow biopsy, this could have been diagnosed with a simple blood test. A radioligist suggested I be tested, in his report to the doctors, however they all ignored it. I was scheduled, to have a liver biobsy, and my Gal Bladder and spleen removed, the doctors in our comunity, need more education on diagnosing this disease.
As soon as I was diagosed, MRA and other referal organizations put me in touch with Rabbi Eckstein. He had a lab take a blood test from me, at no charge. He helped me find a doctor and decide on treatment. He even offered to come with me to Dr. Pastores, the Dr. in charge of treating genetic diseases at NYU, and he sent my medical records to Dr. Mistry at Yale.
There are many in our comunity with the disease, not knowing that they have some are suffering, as our doctors don’t know how to diagnose it.
BTW Treatment cost about $450,000.00 per year, the doctors and Genzyme who makes the drug, are searching for patients. Insurance company’s wish you don’t know about it.
I don’t see why Dor Yeshorim needs to test for every disease.. why can’t people go to their regular doctor for testing.. they only need to test to see if a marriage will cause an additional issue
Firstly Dr. Ditchek is NOT the founder of Camp Simcha Speial. He is the medical director and a very good MD at that. Secondly, this is a classic Dr. Ditchek approach to bash anyone that he thinks is doing something that he would like to be doing so let him start his own organization and give people the choice!!!!!
As I understand this, the Gaucher test results have nothing to do with marriage compatibility. Rabbi Eckstein has results that determine that particular individuals DY screened are suffering from Gauchers THEMSELVES.
Now, DY is right to discontinue testing for this disease if it is not relevant to recessive disorders, BUT if they already have results on people who WILL suffer pain and an untimely death if they are not treated, I can see NO reason not to share that information.
As an aside, DY has done great things, but it is truly sad that there would be a stigma attached to carrier status. If one does not marry another carrier it is 100% irrelevant.
What a ridiculous argument. If he feels it is unnecessary. There are many instoitutions that will do the jewish genetic testing for free. Why doesn’t the dr do his own testing program. I think there are many testable diseases various ‘ yene machla’ risks and thousands of other diseases that can be fatal. The point of the test is that it eliminates diseases that definitely are fatal at a young age. This disease is not.
To all of you out there who doubt Dr. Ditchek’s intentions let me tell you this. Dr. Ditchek is a tzaddik in every sense of the word. He is moser nefesh literally for the klal. I personally know of instances where he went way above and beyond, spending nights at home and in the hospital with seriously ill children.His work for the klal,which goes beyond his medical profession is totally l’shem shomayim. Now I’m not doubting Rabbi Eksteins motives or intentions, but Dr. Ditchek is the one out on the field, treating and counseling these patients. He sees first hand what this disease can do to a person, a family, and every thing he does is after consulting daas torah. So, if anyone has an opinion it is the likes of Dr.Ditchek. One last question, when chas vashalom a person finds out that they are diseased,or if a child is born with this disease,chas vashalom, unfortunately in our community, uninformed individuals(the majority) would be reluctant to do a shidduch with that family for the same reason DY was created. Why do we need all this suffering and pain? If the public would be informed of the possibilities,the risk,etc.. We would be able to minimize potential suffering of the patient and give the patient the chance to have a better quality of life.The stakes are too high, it’s about time we face the flaws in our community. We need more Dr. Ditcheks in our community who aren’t afraid to speak the truth.Happy Chanukah.
Slowly, their opinion is, we took the obligation of Warning the community when the disease is fatal, but not if its treatible!
The total of the organization: they saved hundreds of lives! But they our not ready to scar people, they don’t feel that they have the freedom of doing that!!!! That’s America.
I dont know Dr, Ditchek, but using the press as a podium to achive a goal while coming out against this wonderfull org.is unaccaptable, even he is 100% right.
I would say that it wasnt his idea, but the idea of those who love to publish critics and feal that this will help them grab attantion.
HELLO WAKE UP: most frum people use the one organization, its easy. (If you dont go there you may do a disservice to your future mate.)
By doing that its all under one roof. NO dealing with insurance.
No running to doctors before you want to become engaged.
No miscommunication.
NO money for each test you take. This is quick and simple and of course trust worthy.
Yes: we all use dor yishorim and get our results. Hashem should bentch them
NO it wont tell you about other genetic issues a person can have.
Yes : Just some devestating ones that can be wiped out with prevention…………………….
Ailee v’ailee divrai elokim chaim. No need to get personal here, I believe both sides are clearly doing what they think is right by the people and we should respect their opinions……..
Now that there is treatment for it, we feel uncomfortable telling young people [to be tested]. I believe it is a disservice to tell them not to get married.”
And this is like saying that if they knew that someone had a blood clot why say anything? Afterall catching a blood clot on time can be treatable.
Dor Yeshorim people are reckless in this case (IF THE STORY IS TRUE) and just because they saved thousands of lives does not mean they have a right to withhold information. Let the couples decide what they feel is best for them.
as one of the few frum gaucher patients out there speaking about Gaucher and counseling other GD patients I can tell you how aweful the stigma of having a jewish disease is in our communities.. I wish thins would chane and I think sometimes that dor yeshorim only continues the stigma… however for many people dor yeshorim serves a real need and does wonderful work.. For reasons like this case it really is a double edged sword…
So let me understand this if the head of Dor Yeshorim saves 17,000 people but 10 people are not told about a bad result because he does not care, this is alright?
Can someone explain the warped logic?
If someone thinks its important he should open up an organization for it or start a massive advertising encouraging people to visit their doctor and take such a test. DY was “NOT” established for this reson and they are not obligated nor responsible and they shouldn’t do it, cuz it will prevent people taking d other nessacery life saving tests. maybe we should arrange with BIKUR CHOILIM that by every blood drive they should test for this too. why not HATZOLOH.
I and two of my children have Gaucher’s. We have been tested (at our request) by Dor Yeshorim and I have spoken to Rabbi Eckstein concerning Gaucher’s testing. His position was that since since Type I Gaucher’s ( the type associated with Ashkenazi Jews) is not fatal and people don’t generally have severe symptoms until later in life, and that there is a treatment, He felt that testing and reporting it would unnecessarily farshtehr shidduchim. He said he was concentrating on catestrophic deseases like Tay-Sachs v’gomer.
is it not just common sense that anyone who is turned down for any shidduch turn immediately for further testing?
certainly, the problem may lie with ‘the other side’ but turning to a genicist would still seem to be elementary zehirous!?
Let’s be honest here for a moment. It’s very hard to know the details here without speaking to each side personally. Trusting the JEWISH WEEK on this issue would be pretty naive.
But be as it may, and working with the details which we DO have, i would have to say that they both have a very strong point. BUT.. this org. was established ONLY for preventing the marriage of TWO carriers of the same disease. Its mission was not intended to let people know of sicknesses they may carry.
Having said that, i would still think that if given the option most people WOULD opt to have them informed of any disease they may carry.
At the end of the day though – as i said earlier – that wasn’t the reason this org. was established. So let’s not condemn him for doing wonderful work.
Dor Yesharim is just not up to date with peoples attitudes – which have changed.
They should do a Full genetics panel and report it to the person – no more partial results and no more childish hiding: if your old enough (and mature)to get married you should be mature enough to handle the genetics information.
Does any one know the ansewer to this one ?
Is it legal what dor Yeshorin does by not giving the information of the Labwork results to a individual ?
I always knew that a Lab or Doctor has to give all information to the individual treated.
Also, is it legal for Dor Yeshorim to hold down to the blood sample for ever, for future study’s, with out the consent and permision of the individual to know what kind of experimenting and study’s they do ?
AS PER THE ARTICLE THAT GAUCHERS DISEASE CAN BE TREATED WITH ENZYMES IF CAUGHT EARLY ENOUGH “EARLY TEENS” MOST BOYS/GIRLS DONT TAKE THE TEST UNTILL 17 OR 18 FOR BOYS SOMETIMES EVEN LATER SO WOULD SEEM TOO LATE TO REALLY BE TREATED IN ANYCASE SO WHY WORRY SOMEONE FOR NO REASON?
IF IT SHOULD MANIFEST ITSELF LATER ON A COMPETENT DR WOULD PICK UP ON IT IN ANYCASE
please note that the medical director of dr ditchek’s organization is conservative. i dont see any orthodox rabbis being named in this article coming out in support of his position. dor yeshorim was built with the haskomas of gedolei hador, and continues to consult our gedolim on these issues. enough said.
With 67 comments already posted, I see one thing missing from all of them: i’d like to see a halachic opinion actually attributed to somebody. Not ‘the gedolim’ or ‘a gadol’. A real opinion from a real, live gadol b’torah.
if Dr D. raises an issue, i suggest you investigate it thoroughly before you criticize him. He has an impeccable track record and only speaks when he’s intimately familiar with the situation at hand. I’ve seen him in action, both at Camp Simcha as well as in other social situations. Rabbi E., notwithstanding his tzidkus, should at least entertain a change in policy.
Dor Yeshorim is an amazingly successful organization exactly because it maintains 100% anonymity.
My question is: If Gaucher’s is so prevalent and hard to diagnose, why don’t all pediatricians in out community routinely test for it, and start treatment (discreetly) at an early age before any damage is inflicted? The information then stays with the parents.
There are so many tests and vaccinations that are legally required, let this test be an additional one in the Ashkenazi community.
Dr Ditchek was hired by Chai Lifeline to be the Camp Simcha Special Medical Director. He is not the founder of the program, Chai Lifeline is. To go public with a complaint against Dor Yesharim in the Jewish Week is iresponsible and wrong. Did Dr. Ditchek as a shaila before doing so?
When my sister took DY tests they were screening at the time for Gaucher’s. When she tested positive (only as a carrier) they asked to test the entire family. I also tested positive as a carrier, but do not have the desease b”H. When was dating my wife, and we did the DY matching, they told my wife that they “lost her test results” and she should come take new tests. Only later did we find out that they really had her results they just wanted to check her for Gaucher’s without having to tell her that I was a carrier. Kol haKavod to DY!!! Great work!!!
#74
I just got up from my coach I was so tired had a full day anyway I’m laughing almost waking up all the children …do you want that real godel das torah opinion by name like godol hador or anoymous is fine?