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Brooklyn, NY - Founder Of Genetic Testing Organization 'Dor Yeshorim' Under Fire For Withholding Infomartion

Published on: December 23, 2008 05:31 PM
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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.

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.

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“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.”
Left, Rabbi Josef Ekstein, founder of Dor Yeshorim
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.



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Read Comments (233)  —  Post Yours »

1

 Dec 23, 2008 at 05:48 PM Anonymous Says:

Participant value the privacy and only agreed to be tested anonymously for the purpose of marriage compatibility. Anyone concerned can have other testing done.

2

 Dec 23, 2008 at 05:52 PM A Gaucher Patient Says:

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...

3

 Dec 23, 2008 at 05:45 PM Fairness Doctrine Says:

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.

4

 Dec 23, 2008 at 05:51 PM Anonymous Says:

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!!!

5

 Dec 23, 2008 at 06:14 PM glatekup Says:

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.

6

 Dec 23, 2008 at 06:32 PM Anonymous Says:

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.

7

 Dec 23, 2008 at 06:30 PM Anonymous Says:

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

8

 Dec 23, 2008 at 06:30 PM glatekup Says:

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.

9

 Dec 23, 2008 at 06:30 PM Anonymous Says:

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?

10

 Dec 23, 2008 at 06:30 PM Anonymous Says:

Moisheleh Holtzberg has two siblings (one died) with Tay Sachs

11

 Dec 23, 2008 at 06:27 PM Anonymous Says:

Dr. Ditchek is an expert. He is the Director of the Camp SImcha Special program which he started for children with such diseases.

12

 Dec 23, 2008 at 06:24 PM Anonymous Says:

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.

13

 Dec 23, 2008 at 06:20 PM Anonymous Says:

Reply to #4  
Anonymous Says:

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!!!

How does Dor Yeshorim control how you think??

14

 Dec 23, 2008 at 06:19 PM glatekup Says:

Reply to #4  
Anonymous Says:

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!!!

Were you tested for all the tests that dor yesharim tests for. I bet you not. Rabbi Ekstien is a tzaddik. His new life mission is kehilla cord which is groundbreaking and will save hundreds if not thousands of people in the years to come. May he have a lot of hatzlocha in all his endeavors.

15

 Dec 23, 2008 at 06:35 PM Anonymous Says:

Reply to #3  
Fairness Doctrine Says:

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.

"Fairness" eh?
Ditchek is just as much frum person and does alot of chesed for the community
he is obviously attempting to correct a major flaw in a popular scheme.

Come to think of it ,. rosenblatt is frum too, so what are you saying exactly?

16

 Dec 23, 2008 at 07:29 PM Anonymous Says:

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.

17

 Dec 23, 2008 at 07:24 PM Anonymous Says:

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).

18

 Dec 23, 2008 at 07:24 PM Anonymous Says:

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.

19

 Dec 23, 2008 at 07:23 PM Anonymous Says:

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.

20

 Dec 23, 2008 at 07:16 PM Anonymous Says:

Reply to #12  
Anonymous Says:

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.

What is "testing too much"? Where do you draw the line?

21

 Dec 23, 2008 at 07:11 PM Anonymous Says:

Reply to #12  
Anonymous Says:

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.

It appears you missed the point. If there is a test that can catch a disease early while it is treatable, that may be "playing g-d" but by your logic going to the dr. if you have chest pains also is playing g-d. Do you shun all medicine and doctors because that is what they do? Do you also deny your children medical care because getting treatment is playing g-d?

22

 Dec 23, 2008 at 07:09 PM Anonymous Says:

Reply to #15  
Anonymous Says:

"Fairness" eh?
Ditchek is just as much frum person and does alot of chesed for the community
he is obviously attempting to correct a major flaw in a popular scheme.

Come to think of it ,. rosenblatt is frum too, so what are you saying exactly?

rosenblat's "frukeit" is not equivalent to rabbi eckstein"s iknow him very well nice guy but he has a reform constituency he answers to in a very yes sir manner

23

 Dec 23, 2008 at 07:04 PM Anonymous Says:

Reply to #15  
Anonymous Says:

"Fairness" eh?
Ditchek is just as much frum person and does alot of chesed for the community
he is obviously attempting to correct a major flaw in a popular scheme.

Come to think of it ,. rosenblatt is frum too, so what are you saying exactly?

What we have here is a clash of cultures, distorted by the media. Dor Yeshorim is a specific system of pre-marital testing for Jews seeking to avoid fatal recessive disorders in their children. It is predicated on the machshava of gedolim, most specifically Rav Moshe Feinstein, who so wisely understood that unless relevant, knowledge of one's carrier status is not necessary and can be disturbing. Dor Yeshorim's findings are compatability/uncompatability in terms of fatal diseases. Period. Individual results are not shared. This brilliantly devised system-- honed with love and great thought by Rabbi Ekstein along with gedolai hador-- is now contrasted with our great free and open society where full disclosure is the order of the day.
It is a free country. Anybody can go and be tested for anything. If Dor Yeshorim needs to further spell out its program, and its limits, let it do so. But
let Dor Yeshorim continue its holy work as it is. Our children live in a frightening enough world without burdening them with "toxic knowledge" that will blessedly have no bearing on their life-- thanks to Rabbi Ekstein and Dor Yeshorim.

24

 Dec 23, 2008 at 06:58 PM Anonymous Says:

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?

25

 Dec 23, 2008 at 06:58 PM Anonymous Says:

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.

26

 Dec 23, 2008 at 06:55 PM Anonymous Says:

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.].

27

 Dec 23, 2008 at 06:54 PM Anonymous Says:

Reply to #13  
Anonymous Says:

How does Dor Yeshorim control how you think??

the prey on young people - especially the girls. it has become a "right of passage" as a part of growing up that all girls in 12th grade get tested as part of entering womanhood. this way, there is a constant supply of clients and an annual steady cash flow for the organization.
young people male and female feel that they simply must test through them and let them decide if they should marry or not. its a silly system. its not obligatory yet people think they must do it.

28

 Dec 23, 2008 at 06:52 PM glatekup Says:

Reply to #11  
Anonymous Says:

Dr. Ditchek is an expert. He is the Director of the Camp SImcha Special program which he started for children with such diseases.

Yes, Dr. Ditchek is the MEDICAL director of camp simcha special and deals with a lot of genetic illnesses in his practice in flatbush(especially FD). This makes him entitled to an opinion but not necessarily does rabbi ekstien have to go along with it. He has to answer to a rabbinical/medical/ethical board.

29

 Dec 23, 2008 at 06:52 PM shmuel Says:

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!!

30

 Dec 23, 2008 at 06:49 PM g.rosenberg Says:

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.

31

 Dec 23, 2008 at 06:48 PM Anonymous Says:

Reply to #8  
glatekup Says:

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.

twist all you want to make it sound right to you. bottom line is that dor yesharim is not flawless

32

 Dec 23, 2008 at 06:44 PM glatekup Says:

Reply to #9  
Anonymous Says:

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?

Dor yesharim has a branch in yerushalayim and also in every jewish community in europe.

33

 Dec 23, 2008 at 06:42 PM glatekup Says:

Reply to #7  
Anonymous Says:

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

You recall wrong. You need to give them your info but you only get a number and the number is retrievable if it is lost.

34

 Dec 23, 2008 at 07:46 PM Anonymous Says:

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

35

 Dec 23, 2008 at 08:10 PM Anonymous Says:

Reply to #27  
Anonymous Says:

the prey on young people - especially the girls. it has become a "right of passage" as a part of growing up that all girls in 12th grade get tested as part of entering womanhood. this way, there is a constant supply of clients and an annual steady cash flow for the organization.
young people male and female feel that they simply must test through them and let them decide if they should marry or not. its a silly system. its not obligatory yet people think they must do it.

If it were up to you, the world would return to the horror that existed before Dor Yeshorim was founded. Dor Yeshorim was established with haskamahs from virtually all leading gedolim and consultation with leading scientists. The system walks a fine line, preventing the incidence of fatal recessive disorders that plague inbred communities without traumatizing or stigmatizing those involved. This way confidentiality and sanity are preserved. As others have said: If you don't want to participate, you don't have to. The bechirah is yours. But to denigrate this organization is to denigrate the wisdom and daas Torah behind it.

36

 Dec 23, 2008 at 08:39 PM Anonymous Says:

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.

37

 Dec 23, 2008 at 08:35 PM Anonymous Says:

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.

38

 Dec 23, 2008 at 08:33 PM Anonymous Says:

Reply to #27  
Anonymous Says:

the prey on young people - especially the girls. it has become a "right of passage" as a part of growing up that all girls in 12th grade get tested as part of entering womanhood. this way, there is a constant supply of clients and an annual steady cash flow for the organization.
young people male and female feel that they simply must test through them and let them decide if they should marry or not. its a silly system. its not obligatory yet people think they must do it.

They don't "prey" on girls, from what I understand they take a loss on the fees of every person they test. They need to fundraise to cover the costs.

Having said that, there are flaws with their system, that is why I did not test through them.

Many insurance companies will pay for the screening if prescribed by your doctor. The testing done by most labs are more expensive DNA testing that is more accurate than standard blood testing done by Dor Yeshorim, where they look for markers of certain genes.

For people who might be "stigmatized" by knowing they are carriers of certain genes, then Dor Yeshorim is your only choice.

If you are mature enough not to feel stigmatized if you are a carrier, the better choice is a private lab. I was tested and was found to be a non-carrier. It made life much simpler without having to call every time I wanted to go out with someone.

39

 Dec 23, 2008 at 08:33 PM Anonymous Says:

Reply to #10  
Anonymous Says:

Moisheleh Holtzberg has two siblings (one died) with Tay Sachs

and the other one is dying of it ,too. moisheleh was spared. i know a woman who ost 5 children to this nightmare.and it's not just the deaths of the children that make it so devastating. it's the process of watching them slowly deteriorate and regress for years before it finally kills. them. to go through that slow torture as a parent five times defies imagination. this is the anguish that dor yeshorim has saved us from. this man has a special place in gan eden i assure you.

40

 Dec 23, 2008 at 08:33 PM Dag Says:

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.

41

 Dec 23, 2008 at 08:28 PM Anonymous Says:

Reply to #4  
Anonymous Says:

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!!!

lucky you could afford to do so. many people can't & we credit dor yeshorim for saving us from the fear of the ravages of these devastating illnesses on our children.

42

 Dec 23, 2008 at 08:26 PM Anonymous Says:

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!!!!!

43

 Dec 23, 2008 at 08:19 PM Anonymous Says:

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

44

 Dec 23, 2008 at 08:14 PM Gaucher patient Says:

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.

45

 Dec 23, 2008 at 08:42 PM Anonymous Says:

Slowly, their opinion is, we took the obligation of Warning the community when the disease is fatal, but not if its treatible!

46

 Dec 23, 2008 at 08:50 PM Anonymous Says:

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.

47

 Dec 23, 2008 at 08:47 PM Dag Says:

Reply to #38  
Anonymous Says:

They don't "prey" on girls, from what I understand they take a loss on the fees of every person they test. They need to fundraise to cover the costs.

Having said that, there are flaws with their system, that is why I did not test through them.

Many insurance companies will pay for the screening if prescribed by your doctor. The testing done by most labs are more expensive DNA testing that is more accurate than standard blood testing done by Dor Yeshorim, where they look for markers of certain genes.

For people who might be "stigmatized" by knowing they are carriers of certain genes, then Dor Yeshorim is your only choice.

If you are mature enough not to feel stigmatized if you are a carrier, the better choice is a private lab. I was tested and was found to be a non-carrier. It made life much simpler without having to call every time I wanted to go out with someone.

Does the testing itself cost more than they charge, or are there other costs (salary, facility, etc)

48

 Dec 23, 2008 at 09:22 PM Anonymous Says:

Reply to #3  
Fairness Doctrine Says:

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.

Stop blaming the jewish week.

Everytime there is article about us we fly off the coop but when it's a different religion that is in question nobody says one word!

49

 Dec 23, 2008 at 09:28 PM Anonymous Says:

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.


50

 Dec 23, 2008 at 09:34 PM Rocheyl@gmail.com Says:

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...

51

 Dec 23, 2008 at 09:15 PM glatekup Says:

Reply to #47  
Dag Says:

Does the testing itself cost more than they charge, or are there other costs (salary, facility, etc)

Try to go to a lab and ask them to test for these 9 diseases. It will be a small fortune. And most insurances pay little or nothing.

52

 Dec 23, 2008 at 09:11 PM Moshe Says:

Reply to #19  
Anonymous Says:

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.

My wife was tested & I was not. He refused to release her results. The frustration that he caused us was tremendous. My wife 2 b was in Israel I was here. In order to get the results ASAP I had 2 get tested by a private lab the 1st time the results were inconclusive. The 2nd * they were negative. If he would have given me my wifes results I would not have to go thru all of this.

53

 Dec 23, 2008 at 09:10 PM pro Says:

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........

54

 Dec 23, 2008 at 09:07 PM Anonymous Says:

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.........................

55

 Dec 23, 2008 at 09:04 PM Anonymous Says:

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.

56

 Dec 23, 2008 at 08:59 PM boroparkyenta Says:

Reply to #27  
Anonymous Says:

the prey on young people - especially the girls. it has become a "right of passage" as a part of growing up that all girls in 12th grade get tested as part of entering womanhood. this way, there is a constant supply of clients and an annual steady cash flow for the organization.
young people male and female feel that they simply must test through them and let them decide if they should marry or not. its a silly system. its not obligatory yet people think they must do it.

No girl decides on her own to get tested. Her parents are paying the fees, just as the boy's side are paying what they think is a fair and reasonable amount, to get this test done. Yes we all have issues, and they are only testing for what can be fatal later on. Anyone that suspects something or desires further testing or knowledge can always have it done privately. Everyone has some sort of gene they are carrying, some dont want to know.....the ones that do can pay for that.
They are providing a service that many want. The ones that dont want to be tested, can have the problems that Moshe Holzbergs parents had, because in Israel, it has not yet become so acceptable to do this test. There are many Tay Sachs children there, far more than over here.....thanks to Rabbi Eckstein, who had to live with that. He has done thousands of people a service, without publicizing anything, and the system works because people want it and are happy with it.
It is fairly priced, organized well, and done for a good purpose.
Young people dont always have the brains, knowledge, and experience that their parents have, and since the parents fund the wedding, and almost everything else, parents feel this is a small price to pay to avoid heartache in the future. Down syndrome children cannot be prevented by genetic testing...but other diseases can. Parents will be emotionally involved in the future, and they do have a say regarding prevention.
Every day brings new genes and new testing possibilities, just how far we should go is questionable. But knowledge should be left to people choosing their own doctors and having their own testing done, whether in addition to the one by DY or simply on their own.
Saying the program is silly, is simply reflecting a lack of intelligence.

57

 Dec 23, 2008 at 09:46 PM Anonymous Says:

Reply to #1  
Anonymous Says:

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 think what Dor Yeshorim has done is amazing....case in point....when we ran a match for genetic compatibility some years back with a shidduch that was "redd" to my daughter...we found out my daughter is a carrier for cystic fibrosis....we were stunned....there was no history in my family or my husband's family...she was retested and the results were accurate....we are overwhelmingly grateful to Dor Yeshorim....and my daughter Baruch Hashem is married, however, i have other children who were tested by Dor Yeshorim....and are about to be in the "parsha" and since there is a 25% chance (i think that's the genetic determinant) that each one is a carrier for CF - i'd really like to know the results...and Dor Yeshorim won't give them to me....i think that 25-some years after Dor Yeshorim began...our community can handle knowing their own genetic carrier status without it negatively impacting on shidduchim....i think the more we hide the status the more we stigmatize it....it would give me and my children peace of mind to know their status ahead of time....instead i have to figure out how i'm going to ask for the Dor Yeshorim compatibility to be done early in the shidduch process so that the potential couple doesn't get emotionally involved....and you know that most parents are disinclined to consent to that until "it's serious".....and i have to do it in a "bahalteneh" way because carrier status is still "in the closet" - i think it's time we grew up as a community - and that Dor Yeshorim trusts us with our own lives....and, no, you can't go elsewhere, to do the tests at a lab dedicated to genetic testing.....because the tests are extraordinarily expensive.......i looked into it....the test for CF alone, without the other genetic diseases costs more than $300.......

58

 Dec 23, 2008 at 09:35 PM Anonymous Says:

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?

59

 Dec 23, 2008 at 10:00 PM Raphael Kaufman Says:

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.

60

 Dec 23, 2008 at 10:13 PM Anonymous Says:

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!?

61

 Dec 23, 2008 at 09:55 PM Anonymous Says:

Reply to #27  
Anonymous Says:

the prey on young people - especially the girls. it has become a "right of passage" as a part of growing up that all girls in 12th grade get tested as part of entering womanhood. this way, there is a constant supply of clients and an annual steady cash flow for the organization.
young people male and female feel that they simply must test through them and let them decide if they should marry or not. its a silly system. its not obligatory yet people think they must do it.

What kind of crazy idea is this?! Dor Yeshorim is a wonderful orgaization that has spared many people pain and suffering. A young girl or boy can make their own decision about being tested and anyone with brains, would undergo genetic testing through DY or other forms. DY does NOT tell people if they should marry or not. They tell a couple whether they are 'compatable' or not. If it is found that they are not compatible, DY offers the couple the courtesy of a retest and then let them make their own decison about marriage.
The Jewish community owes a lot of hakaras hatov to Rabbi Eckstein and DY.

62

 Dec 23, 2008 at 09:50 PM Dag Says:

Reply to #51  
glatekup Says:

Try to go to a lab and ask them to test for these 9 diseases. It will be a small fortune. And most insurances pay little or nothing.

Glate,

That didn't answer the question!

63

 Dec 23, 2008 at 09:49 PM Anonymous Says:

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.

64

 Dec 23, 2008 at 10:38 PM Anonymous Says:

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.

65

 Dec 23, 2008 at 10:37 PM glatekup Says:

Reply to #47  
Dag Says:

Does the testing itself cost more than they charge, or are there other costs (salary, facility, etc)

Sorry if I did not explain myself. I meant to say that if you go to a lab it costs a fortune,maybe 2000.00 so therefore I figure that dor yesharim is not even covering the cost and it is being subsidized by grants etc. But since I don't work for DY I don't know that forsure.

66

 Dec 23, 2008 at 10:34 PM Anonymous Says:



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.

67

 Dec 23, 2008 at 10:20 PM rocheyl@gmail.com Says:

Reply to #59  
Raphael Kaufman Says:

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.

I really don't believe that Gaucher is only severe later in life.. I have met way too many children whose lives were severly altered due to Gaucher... most of those cases were before the advent of treatment but several had horrible childhoods due to lack of dianosis for so long... Bone crises, deformed organs, shortened stature, low platlets and easy buising, etc are all issues affecting children with Gaucher...

68

 Dec 23, 2008 at 11:21 PM Anonymous Says:

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

69

 Dec 23, 2008 at 11:26 PM Anonymous Says:

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.

70

 Dec 23, 2008 at 11:20 PM Heshy Says:

Reply to #64  
Anonymous Says:

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.

Unfortunately, ignorance & prejudice beats maturity every time. If someone is a "carrier"; (even though a carrier without a carrier spouse bears zero risk to a child) they will be stigmatized. Dor Yeshurun is a brilliant solution 25 years ago and today.

71

 Dec 23, 2008 at 11:14 PM Anonymous Says:

Reply to #4  
Anonymous Says:

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!!!

the point is to avoid being in a position that first you have a wife and then go for testing. If you find out you are carriers then what?? No kids??

72

 Dec 23, 2008 at 11:03 PM Anonymous Says:

Reply to #17  
Anonymous Says:

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).

If you have medical insurance, the fee shouldn't be steep at all....

73

 Dec 23, 2008 at 10:58 PM Anonymous Says:

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 ?

74

 Dec 23, 2008 at 11:32 PM Anonymous Says:

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.

75

 Dec 24, 2008 at 04:18 AM DorReshoim Says:

Reply to #33  
glatekup Says:

You recall wrong. You need to give them your info but you only get a number and the number is retrievable if it is lost.

sadly not true. i lost mine i am now abroad and even though they can trace it using my social security they refused to do so. it was a good organization that got too big and now looks for any way to cover spiraling costs. ill have to pay to retake the test now.

76

 Dec 24, 2008 at 04:13 AM Anonymous Says:

I (non American) and my fiance went to be tested. We requested Gaucher tests because I knew from years back in my country that I am a carrier. We were contacted and asked why we requested Gaucher testing. When I said that I knew I was a carrier they disqualified both of us from the program (we never got our money back).

My fiance was tested at NYU and Dor Yeshorim served no purpose for us. The experience left me with a bad impressino of their motives.

77

 Dec 24, 2008 at 06:26 AM glatekup Says:

Reply to #73  
Anonymous Says:

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 ?

Do you think that dor yesharim is a stupid fly by night chasiddishe organization? They have a board of medical and legal advisers. And by the way you should thank them for keeping samples of blood for years. The fact is that as time goes by and there are advances in the medical field this blodd will and has come to good use. For example, a few years ago the gene that causes the symptoms of familial dysautonomia was identified by dr. Rubin(and by the way DY partially funded his research). Because DY kept a sample of your blood most people were not required to draw blood again and it was just tested and updated in the system as another genetic test. Before people talk and write, bashing DY, they should take out the time to learn how the testing is done. A person taking the test signs disclosures that this is an anonymous test. You may not agree with everything that they do but there is a "mehalech" and a very thought out "mehalech". Whoever does not like what they do does not have to go to them. They do a service, and if you don't like it you can always go elsewhere.

78

 Dec 24, 2008 at 06:12 AM sydney Australia Says:

In sydney Australia, you get the results. My wife did the test in high school . Its given for free and sponsored by the Wolper Jewish Hospital. Since she was not a carrier I never had a test done. Thank you Wolper Hospital for the wonderful work that you do. Thank you for sponsoring another important org. Hatzolah Sydney's SUV.

79

 Dec 24, 2008 at 05:45 AM Anonymous Says:

rabbi eckstien has tremendous zechusim and has saved thousands of lves from terrble tzaros. while i agree people shuld know what they have let gedolim and doctors otside the newspaper fx ths problem. btw when going for a physical to your doctor you can ask to be tested as well. the dor yesharim system is a tremendous chesed

80

 Dec 24, 2008 at 02:17 AM got up from the coach Says:

#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?

81

 Dec 24, 2008 at 01:43 AM Anonymous Says:

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!!!

83

 Dec 24, 2008 at 01:01 AM Anonymous Says:

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?

84

 Dec 24, 2008 at 12:53 AM LOL Says:

Reply to #69  
Anonymous Says:

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.

Actually if you know already that your parents arent carriers then you arent either...

85

 Dec 24, 2008 at 12:44 AM Anonymous Says:

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.

86

 Dec 24, 2008 at 06:32 AM Anonymous Says:

Why do pple always needs to critique...we were tested in high school, and i appreciated being cared about enough to make me aware of the risks.Why can't anyone just say thank you to him for helping pple??? always needs to critique..if you have any issues, then just request testing on your own at a private lab.

Geez

87

 Dec 24, 2008 at 12:32 AM Anonymous Says:

Reply to #4  
Anonymous Says:

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 people like you who destroy our communities good work.
Shame on you!!

88

 Dec 24, 2008 at 12:31 AM 75 Says:

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.

89

 Dec 24, 2008 at 12:18 AM Anonymous Says:

Reply to #27  
Anonymous Says:

the prey on young people - especially the girls. it has become a "right of passage" as a part of growing up that all girls in 12th grade get tested as part of entering womanhood. this way, there is a constant supply of clients and an annual steady cash flow for the organization.
young people male and female feel that they simply must test through them and let them decide if they should marry or not. its a silly system. its not obligatory yet people think they must do it.

now thats the most absurd and a waste of time kinda answer. where did you come up with such jew hating response. the system worked, works and will work further. you moron, what sect do you come from and by any chance are you a procrastinator. why wait ? why not be prepared? and btw do you even know the difference between dor yeshorims price and private lab price. somehow you seem a bit too influenced by the outside world .

90

 Dec 24, 2008 at 06:53 AM Anonymous Says:

Reply to #77  
glatekup Says:

Do you think that dor yesharim is a stupid fly by night chasiddishe organization? They have a board of medical and legal advisers. And by the way you should thank them for keeping samples of blood for years. The fact is that as time goes by and there are advances in the medical field this blodd will and has come to good use. For example, a few years ago the gene that causes the symptoms of familial dysautonomia was identified by dr. Rubin(and by the way DY partially funded his research). Because DY kept a sample of your blood most people were not required to draw blood again and it was just tested and updated in the system as another genetic test. Before people talk and write, bashing DY, they should take out the time to learn how the testing is done. A person taking the test signs disclosures that this is an anonymous test. You may not agree with everything that they do but there is a "mehalech" and a very thought out "mehalech". Whoever does not like what they do does not have to go to them. They do a service, and if you don't like it you can always go elsewhere.

Thanks "GLATEKUP" for your ansewer, I am in agreement with you, I am personaly a big DY fan and understand the reasons behind every thing they do. However my question was more to the fact if what they do is legaly protected ? I spoke the well & broad knowledge attorney and he told me that they would never stand up in COURT if they get sued by some individual or public org.

The test are mostly conducted for boys & girls in a massive operation, usualy on Bein Hamanim, and a very large precentage of them are under the age of 18 with out getting the concent of their parents.

I am very concernd for Rabbi Eckstein and DY if someone out there gets hurt or mistreated by DY as you can very well read by some of coments made by the reply's, and has the money and time to sue, he will.

91

 Dec 24, 2008 at 07:04 AM Anonymous Says:

Reply to #77  
glatekup Says:

Do you think that dor yesharim is a stupid fly by night chasiddishe organization? They have a board of medical and legal advisers. And by the way you should thank them for keeping samples of blood for years. The fact is that as time goes by and there are advances in the medical field this blodd will and has come to good use. For example, a few years ago the gene that causes the symptoms of familial dysautonomia was identified by dr. Rubin(and by the way DY partially funded his research). Because DY kept a sample of your blood most people were not required to draw blood again and it was just tested and updated in the system as another genetic test. Before people talk and write, bashing DY, they should take out the time to learn how the testing is done. A person taking the test signs disclosures that this is an anonymous test. You may not agree with everything that they do but there is a "mehalech" and a very thought out "mehalech". Whoever does not like what they do does not have to go to them. They do a service, and if you don't like it you can always go elsewhere.

If they have a board of Medical & Legal advisors can they please list them to the public with their Tel # this way the public has a chance to call them with questions.

By saying they have a board, thats not good enough "Berny the Ganef" also had a board.

92

 Dec 24, 2008 at 07:46 AM glatekup Says:

Reply to #91  
Anonymous Says:

If they have a board of Medical & Legal advisors can they please list them to the public with their Tel # this way the public has a chance to call them with questions.

By saying they have a board, thats not good enough "Berny the Ganef" also had a board.

I do not work for DY but I believe that if you call them up they will give you a list of their medical and legal board. As a matter of fact, I think on their letterheads it clearly states their medical board and the rabbinical endorsements.

93

 Dec 24, 2008 at 07:36 AM glatekup Says:

Your crazy. They don't make any more money for each shidduch. There is a one time fee.

94

 Dec 24, 2008 at 07:34 AM glatekup Says:

Reply to #81  
Anonymous Says:

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!!!

We had a similar story in our family and kol hakavod to DY the shidduch went through without any hitches. Kudos to rabbi ekstien who is involved in the day to day operations and raising funds to further the research into these devestating illnesses.

95

 Dec 24, 2008 at 07:31 AM jj Says:

Reply to #4  
Anonymous Says:

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!!!

im glad you found whom to trust the guyem!!!!!!!!!!!! keep up the good work and teach your children the same, but make sure they will not find out that you are a jew!!

96

 Dec 24, 2008 at 08:10 AM Anonymous Says:

Iam aware that both in England and Belgium there has been a lot of negative publicity for DY
There are hospitals in England who do free tests and tell you the results
If a couple are both negative the children are negative and there is no need to test the children DY will lose a lot of business
They will not give you a compatibility confirmation if you have tested elsewhere because they lost your business
They also sell samples of the blood
DY is known to be a money making venture
Why do they not open their books for public scrutinity like all other public organisations

97

 Dec 24, 2008 at 08:36 AM Anonymous Says:

they don't test for cancer or aids either u have to go to a local doctor for that they only test to see if a couple is compatable with each other also they don't charge everytime you call if I mention that the test in englad or belguim are not using dna method as well as not checking for jewish genes..

98

 Dec 24, 2008 at 08:34 AM A Mind is a Terrible Thing to Waste Says:

Reply to #3  
Fairness Doctrine Says:

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.

Is this a serious or sarcastic comment?

If sarcastic, I applaud the writer.

If serious, I recommend going for an IQ test.

It never fails to astound me how stupid people can be by blaming the messenger for the message. The Jewish Week is hardly out to "get" the frum community or any community, for that matter. They are a newspaper and the editor is especially committed to writing about subjects that people have trouble with.

Such as rabbis who are sexual predators. Or lie and deceive innocent people.

Sadly, some members of the frum community live in perpetual denial about the misdeeds, crimes and ignorance that grows like fungus inside this community.

Honestly, how anyone can defend the actions of this rabbi is shocking to me. Ask yourself how you would feel if vital medical information about yourself or a family member was withheld.

This is theft and deception.

In plain English -- it is lying. It is BAD.

I feel sorry for all people who live in the dark, wasting their minds, caught up in some paranoid delusion that the world is out to get them when instead, a brave soul shines a light on a problem in their midst with the intention of effecting positive change.

In this season of lights, may we shine the light of truth on the problems lurking in the dark corners of our community.

99

 Dec 24, 2008 at 08:29 AM Anonymous Says:

Reply to #92  
glatekup Says:

I do not work for DY but I believe that if you call them up they will give you a list of their medical and legal board. As a matter of fact, I think on their letterheads it clearly states their medical board and the rabbinical endorsements.

Why do they only list the Medical & Rabbinical advisor and not the LEGAL team ?

100

 Dec 24, 2008 at 08:47 AM Anonymous Says:

my sister was tested last week in bp it says if u know your status you cannot be tested..if u have a family history please tell us you take the test by their rules.. don't like the rules get tested elsewhere DY is a great org I only will use them think its so easy? open another and compete no monopoly rabbi ekstein lost 4 kids nebach he is leshem shamayim 100 percent!!

101

 Dec 24, 2008 at 08:44 AM Anonymous Says:

I spoke to someone who worked there he sais they just started recently acepting SS numbers so if u lost your number and were tested a while ago they CANT help u (overseas)

102

 Dec 24, 2008 at 08:42 AM Anonymous Says:

they do all ther testing if its often harmful and cost effective NO ONE FORCES YOU I was tested private but it works for most...!

103

 Dec 24, 2008 at 08:51 AM Anonymous Says:

to mr 98 I'm sure u are sarcastic.. en'lighten' your self these are not the dark ages and it is good .. ignorance is bliss.. why would you want to tel your future husband by the way if a CF carrier. being a girl with CF you don't have a clue how wrong you are DY is great as I can avoid the issue all the time I always have a stigma attached to me so kudos to rabbi ekstein and team for helping ppl like me (hundreds of us)

104

 Dec 24, 2008 at 08:54 AM Anonymous Says:

you can get help if treated early teens please note the ppl getting tested are already there

105

 Dec 24, 2008 at 09:24 AM Anonymous Says:

Mr Rabbi Eckstein - I hope you read this. Thank you! My wife and I did Dor Yeshorim, and it saves us the anxiety of not having to worry about our children having one of the genetic diseases you test for. It also saved us thousands of dollars for not needing to do private testing!

For Dr. Stuart Ditchek to slander you (loshon hara b'rabim) in the way that he did (what chutzpah and arrogance to say you think you are G.d!!!) without even acknowledging the good you have done and the potentially thousands of lives you have saved, it just shows that he has his own political agenda of putting a libel on the orthodox Jewish community.

If you are reading this Dr Ditchek -- Do teshuva!!!!

106

 Dec 24, 2008 at 09:39 AM Anonymous Says:

Have you ever used the services of Dor Yesharim?? I am appalled at your ridiculous comment. My married children (both sexes) were tested by Dor Yesharim before they began the shidduch process. You pay once- ONE TIME- when the testing is done. They do not request or accept any form of payment when an inquiry is made to check the genetic compatibility of a couple. You can call and inquire FOR FREE as many times as necessary. When I sent a check to the organization as Tzedaka (because I know that their costs are higher than what they charge) I got a polite phone call from them. They wanted to make sure I was not under the impression that I was required to pay for the information they gave me regarding my child's shidduch. They only cashed the check when they were sure it was a donation. I am very disturbed to read some of the comments here maligning this organization that has done so much for the klal. Their procedures are very carefully thought out according to Rabbonim who helped Rabbi Eckstein set up the system. All the methods used, including not being able to give out info if a person's ID number is lost, have a valid reason. If you don't like the system create your own and see if you can get better results, but do not criticize. Many of the comments here are made by people who are obviously misinformed or just plain ignorant of the medical procedural and Halachic issues involved.

107

 Dec 24, 2008 at 09:36 AM Anonymous Says:

Reply to #80  
got up from the coach Says:

#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?

I'm not sure how my comment could be misunderstood but I'll try to make the meaning of my comment a little clearer.

I'd like to know if anyone reading VIN can share with us the opinion of any widely recognised posaik regarding this issue. Not universally accepted (as this does not exist) by widely recognised, by which I mean a person whose opinion is often sought by a substantial segment of the frum world when issues arise for which the opinions of the majority of LOR's would not be considered of interest to most Orthodox Jews.

If one were to take a look in the Igros Moshe one can see Rav Moshe's a"h shitah on how Dor Yeshorim should conduct Tay Sachs testing.

Obviously Rav Moshe's a"h opinion was not universally accepted as the final word his shitah on this issue would have been one on which to base one's opinion and its inclusion in one's comments above would have made the comment worthy of consideration.

For without quoting a respectable
halachic source, be it Litvish, Yekkish, Chassidish, Sephardesheh, etc, the opinions of the rest of us are really of no consequence.

108

 Dec 24, 2008 at 09:35 AM Anonymous Says:

I totally agree with Dor Yesharim if they would tell every tester that has the disease that they have it then they would be obligated to let the other side know. Sometimes ignorance is bliss. My daughter has a rare disease (not genetic) and although she's still young I know that people will judge her differently once they'll be told about it. (Obviously once the shidduch becomes more serious - not just being redt)
If you suspect that you might have it DY might answer if you call them - if not you can always be tested for it. However, once you know then you are obligated to share that info with the other side (It does put you in a pickle)

109

 Dec 24, 2008 at 09:51 AM JoeFlix Says:

Reply to #7  
Anonymous Says:

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

And the other option is they SHOULD know your name and address and mother maiden name and employer

Dor Yeshorim has a 99.5% success rate in keeping files. You almost never hear of a retest!

110

 Dec 24, 2008 at 09:48 AM Anonymous Says:

Reply to #99  
Anonymous Says:

Why do they only list the Medical & Rabbinical advisor and not the LEGAL team ?

Because most of want to know that the testing is being done under competent medical advice and in compliance with halachah. So we want to know the medical board isn't Dr. Suess and Dr. Laura and the rabbinical board is not made up of two yentas on the back bentch of the local shteebel who shmooze about the inyan between aliyos shabbos morning.

Any legal exposure there might be would be on the part of DY. Only they need be satisfied with and confident in the competence of their legal advisory board (which one could reasonably assume, as they are appointed by DY).

111

 Dec 24, 2008 at 09:47 AM JoeFlix Says:

"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."

Well they don’t test you for Cancer, or Cholesterol, or chicken-pocks or asthma or Gouchers! They don’t have to! If you care for your children, have them tested at you local clinic - blood work is covered by every health insurance and medicaid!!

Kudos to you Rabbi Eckstein! God Bless You!

112

 Dec 24, 2008 at 09:46 AM Anonymous Says:

Reply to #40  
Dag Says:

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.

Apparently, the argument over Gaucher is different than that of the other genetic diseases Dor Yesharim tests for. In other cases, such as Tay Sachs, the test is for carrier status. No one being tested has a chance of having the disease itself.

With Gaucher, the individual being tested may actually have the disease, which is dormant, waiting to wreak havoc later in life. However, given Dor Yesharim's mission of not giving out any information, this puts them between a rock and a hard place.

Since they are no longer testing for this disease, the number of individuals tested for Gaucher may not be as large as those tested for other genetic diseases. (Though it could still be a tremendous number.) Perhaps a suggestion would be to recommend retesting for Gaucher for those who were tested and could possible fall into the category.

113

 Dec 24, 2008 at 10:00 AM whatever Says:

If you are aware of the fact that you wont be told your results before you test, then that is the individual's problem. These people are adults, and should read the fine print responsibly before signing or testing for anything.

If you want to know if you are a carrier for or hold any genetic disease, then go to a professional public clinic or doctor for testing. There are government agencies out there for people who cannot afford such testing, there is also something called heath insurance to aid as well.

114

 Dec 24, 2008 at 09:58 AM Shevy Says:

Reply to #73  
Anonymous Says:

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 ?

What do you care what hey do with your blood? They dont sell it, Lol

People forget to give the guy credit for accomplishing his mission: Killing Tai- Sachs and they only mention what he didnt do- as long as he won't cure cancer people will not leave him alone

115

 Dec 24, 2008 at 10:41 AM webmom Says:

Reply to #10  
Anonymous Says:

Moisheleh Holtzberg has two siblings (one died) with Tay Sachs

does that mean that Lubavitch are against taking the dor yeshorim tests?

116

 Dec 24, 2008 at 10:35 AM DorReshoim Says:

Reply to #101  
Anonymous Says:

I spoke to someone who worked there he sais they just started recently acepting SS numbers so if u lost your number and were tested a while ago they CANT help u (overseas)

All the methods used, including not being able to give out info if a person's ID number is lost, have a valid reason. If you don't like the system create your own and see if you can get better results, but do not criticize.
------
sorry but as a disappointed consumer who got no satisfaction in private i have every right to complain and criticize in public. the problem is that it is a big organization that grew too fast and the people can't handle anything out of the ordinary. when i said i was calling from abroad in a place where i cant retake the test they should have tried to help me. instead after I explained my situation to 2 different people they said they would get back to me and of course did not. and I was specifically told i could use the SS to retrieve my number. if not then frankly i feel i gave them private info for no reason as my ss is information that i guard very carefully.

some of the stuff posted here like the 500 fee is nonsense but mine is a legitimate consumer complaint and at the end of the day when we use DY or any other frum organization and money of any sort changes hands, we are consumers. if we demanded the same standards from our organizations as we did from cars and electronic makers we'd have less coverup of molestation and better chinuch and accountability for every dollar spent by every moised. DY is lesgem shomayim but they have gotten bigger and cant be run like a little shtibl or sforim store.

i'll go to ey just to retest if I have to but i may or may not use DY again.

117

 Dec 24, 2008 at 10:26 AM Anonymous Says:

Reply to #101  
Anonymous Says:

I spoke to someone who worked there he sais they just started recently acepting SS numbers so if u lost your number and were tested a while ago they CANT help u (overseas)

I am american living overseas and when i had it done in the technician's house in BP they sure did accept SS numbers and the technician or DY even told me that i can retrieve the number using SS.

118

 Dec 24, 2008 at 10:25 AM Anonymous Says:

Reply to #4  
Anonymous Says:

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!!!

Prior to Dor Yeshorim, there was no organized testing going on in the Frum community. When you were tested, did Dor Yeshorim exist? BTW, what Halachically viable alternative have you, your family or your community provided for this problem? It's very easy to criticize someone elses success.

119

 Dec 24, 2008 at 10:25 AM Anonymous Says:

ONE CAN TEST BOTH PARENTS FOR TAY-SACHS,AND IF THEY BOTH ARE
NEGATIVE,YOU DONT HAVE TO CHECK ALL THE SIBLINGS.

120

 Dec 24, 2008 at 10:17 AM Anonymous Says:

The purpose of Dor Yeshorim is pre-marital genetic counseling, not notifying a patient regarding the patients health. This is clearly stated in Dor Yeshorim's mission statement.

What doesn't make sense is why Dr. Ditchek did NOT go to an Orthodox forum to voice his issues, but rather to a non-Orthodox forum which is constantly deriding the populace for which Dor Yeshorim was created.

121

 Dec 24, 2008 at 11:01 AM Anonymous Says:

118, before DY people went to doctors or labs to get tested and they knew their results, and they made decisions from there.
If you are old enough to get married, you should be old enough to handle knowing your carrier status.

122

 Dec 24, 2008 at 10:52 AM Anonymous Says:

Reply to #113  
whatever Says:

If you are aware of the fact that you wont be told your results before you test, then that is the individual's problem. These people are adults, and should read the fine print responsibly before signing or testing for anything.

If you want to know if you are a carrier for or hold any genetic disease, then go to a professional public clinic or doctor for testing. There are government agencies out there for people who cannot afford such testing, there is also something called heath insurance to aid as well.

sorry i have nothing against not disclosing any information to anyone. I had all my grown up kids tested and did NOT do a shidich b4 i had results from Dor Yeshurin. The fact that someone signs can be argued ,because my boys were 16 years old when they were asked to bring a $150.00 check back to yeshiva to be tested for Dor Yeshurin. Those boys have no idea what they are signing(most dont read english at all). Again this is a wonderful organization and i am sure it saved dozens of couples getting married with those diseases.

123

 Dec 24, 2008 at 11:25 AM deepthinker Says:

If you go through the list of possible risks, you can probably come up with endless possibilities. So, nobody will get married, just to be on the safe side.

Dor Yeshorim has taken the sensible path--test for the most likely problems, and leave the rest to Heaven.

124

 Dec 24, 2008 at 11:24 AM Anonymous Says:

"If you are old enough to get married, you should be old enough to handle knowing your carrier status"

this is not true. there is no harm in NOT knowing your carrier status. as long as you and your spouse are compatible there will be no future ramifications. but if you test privately, and know that you are the carrier of one, two or three genetic diseases there CAN be negative ramifications. for starters, there are psychological consequences. yes, even mature 18-20 y/o's who are ready to get married can feel "damaged" or inferior knowing they are carriers. second, unfortunately there are still idiots in our community who will avoid a shidduch with a known carrier. it may be pathetic, but it's true. so why put your child in the situation where they have to be potentially subject to that type of discrimination?? DY bypasses these problems in a safe way that protects our kids' best interests. why in Gd's name would you risk doing it any other way???

125

 Dec 24, 2008 at 11:15 AM Anonymous Says:

Reply to #121  
Anonymous Says:

118, before DY people went to doctors or labs to get tested and they knew their results, and they made decisions from there.
If you are old enough to get married, you should be old enough to handle knowing your carrier status.

So all of you who think we shld be able to handle knowing our carrier status do not need to use the services of dor yeshorim. For those od us who feel the blinded method is the best way to protect our kids' emotional health and shidduch possibilities, we will stick to the tried and trued method that's been helping our community all these yrs- DY. If you don't agree with the method, fine, but why criticize what works for so many and clearly saves lives??? That is rishus.

126

 Dec 24, 2008 at 11:11 AM Anonymous Says:

For those who don't know!
Gaucher's disease occurs when certain harmful fatty substances build to excessive levels in your liver, spleen, and lungs.

127

 Dec 24, 2008 at 10:44 AM Anonymous Says:

"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."

Dr. Ditchek should realize and understand what Dr. Kolodny says is the goal of Dor Yeshorim. Being a respected pediatrician and medical director of Chai Lifeline, Dr. Ditchek can recommend to his patients and other doctors that they should test their patients for this during a regular examination in their office. Let Dor Yeshorim continue advising potential couples if they can marry without the genetic worries and let the doctors advise their patients in their private practice.

128

 Dec 24, 2008 at 10:44 AM Anonymous Says:

Reply to #7  
Anonymous Says:

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

You are so Naive.............It's good to see there are still somereally naive people out there........I too did not give my personal information officially but, when I needed my results they said: "we don't want to give it to you because we have an issue with one of your family members who bashes us."
Now you answer the Question: From where did they know who I am, and who my family is?
P.S. They make you retest if you lose your pin 'cause they make the money twice.

129

 Dec 24, 2008 at 10:16 AM Anonymous Says:

As a priate business they can chose their own terms of practice. If you want to make use of their services, go right ahead, and if you don't no one is forcing you.

130

 Dec 24, 2008 at 10:14 AM Anonymous Says:

Reply to #114  
Shevy Says:

What do you care what hey do with your blood? They dont sell it, Lol

People forget to give the guy credit for accomplishing his mission: Killing Tai- Sachs and they only mention what he didnt do- as long as he won't cure cancer people will not leave him alone

You mean we don't use it to bake matzah anymore?

131

 Dec 24, 2008 at 10:06 AM yiddishe bubby Says:

Reply to #12  
Anonymous Says:

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.

this organization was started as a wonderful private way for the community to be in the know about aspects that will impact greatly on future children and trying to avoid tzoris, making a decision based on certain facts that are at our disposal is not playing G-D . A rather loose interpretation of perhaps playing G-D is when you have information that the people involved may be carrying a certain gene and not informing those people. This worthy organization was set up to have couples make informative decisions about their future and the future of their children, sometimes people run with the power they have and make decisions for others this is not right.

132

 Dec 24, 2008 at 10:05 AM sh Says:

Reply to #26  
Anonymous Says:

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.].

But that can also be because of a lack of oxygen at birth.

133

 Dec 24, 2008 at 11:52 AM Anonymous Says:

Reply to #64  
Anonymous Says:

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.

Dor Yeshorim was established with Daas Torah for those who care about Daas Torah. Read Iggros Moshe and learn how Rav Moshe felt about genetic testing. His concern was prevention of stigmatization (which has not diminished one iota in our community) and traumatization of young persons (a very real issue), Unfortunately, many comments reflect our assimilation into non-Jewish thinking and lack of respect for the wisdom of our gedolim. The mark of a gadol is that he can see what we cannot.

134

 Dec 24, 2008 at 11:50 AM Anonymous Says:

Reply to #121  
Anonymous Says:

118, before DY people went to doctors or labs to get tested and they knew their results, and they made decisions from there.
If you are old enough to get married, you should be old enough to handle knowing your carrier status.

If they are old enough to make the decision to get married why do the parents check out all the shiduchim before the youngsters even meet???

135

 Dec 24, 2008 at 11:48 AM parent in the parsha Says:

The problem remains, that if you don't do DY, people will not do shidduchim with you. I know cases where both parents were tested by DY years ago, (which means they are 'clean') and now because their children did not do DY, they are having problems with shidduchim. so the whole thing is a "scam". if the parents wee tested, then the children don't have to be. but if you say to a shadchan that you don't do DY, SHANDA ! THEY"RE HIDING SOMETHING!!
You can order all the same tests through your doctor ( i believe its called Ashkenazic testing) the insurance will pay, and you will have results.
There are MANY rabbonim and roshei Yeshivos that agree that testing needs to be done, but DO NOT AGREE WITH DY. The problem is, as sson as they say something everyone starts screaming DOR YESHORIM DOR YESHORIM!!
rabbi ekstein deserves credit and much s'char for bringing genetic testing out of the closet and into the limelight. Now that there no longer is a stigma, it is time for him to step aside, and let medical people do their job. there are many FRUM ERLCIHE doctors that will follow the Torah in their treatments, and not attempt to play G-D.
Dr. Deitchek is a ISH YASHER. HE has NO ULTERIOR MOTIVE, other then the HEALTH OF YIDDISHE KINDER!
SO which do you think is right??

136

 Dec 24, 2008 at 11:48 AM Anonymous Says:

I find it quite simple why Jewish week is attacking this great tzadik, cuz since the readers and the children of the Jewish week readers marry Goyim they dont have to worry about the Jewish genetic diseases!!!!!!!!!

137

 Dec 24, 2008 at 11:56 AM BIG DEAL Says:

Reply to #116  
DorReshoim Says:

All the methods used, including not being able to give out info if a person's ID number is lost, have a valid reason. If you don't like the system create your own and see if you can get better results, but do not criticize.
------
sorry but as a disappointed consumer who got no satisfaction in private i have every right to complain and criticize in public. the problem is that it is a big organization that grew too fast and the people can't handle anything out of the ordinary. when i said i was calling from abroad in a place where i cant retake the test they should have tried to help me. instead after I explained my situation to 2 different people they said they would get back to me and of course did not. and I was specifically told i could use the SS to retrieve my number. if not then frankly i feel i gave them private info for no reason as my ss is information that i guard very carefully.

some of the stuff posted here like the 500 fee is nonsense but mine is a legitimate consumer complaint and at the end of the day when we use DY or any other frum organization and money of any sort changes hands, we are consumers. if we demanded the same standards from our organizations as we did from cars and electronic makers we'd have less coverup of molestation and better chinuch and accountability for every dollar spent by every moised. DY is lesgem shomayim but they have gotten bigger and cant be run like a little shtibl or sforim store.

i'll go to ey just to retest if I have to but i may or may not use DY again.

Big deal so they know your ss # Do yo know how many people know it, more than you think!!!

138

 Dec 24, 2008 at 11:55 AM Anonymous Says:

Reply to #132  
sh Says:

But that can also be because of a lack of oxygen at birth.

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

then you and your wife prob just got lucky. i dont believe there is any genetic test, thru dy or otherwise, that tests for mental retardation.

139

 Dec 24, 2008 at 11:55 AM glatekup Says:

Reply to #115  
webmom Says:

does that mean that Lubavitch are against taking the dor yeshorim tests?

as far as i know from a family member, they knew that they were both carriers and decided to marry anyway and take the chances. the statistics are that one out of four will be affected and three out of four will be carriers.

140

 Dec 24, 2008 at 11:39 AM Anonymous Says:

Reply to #120  
Anonymous Says:

The purpose of Dor Yeshorim is pre-marital genetic counseling, not notifying a patient regarding the patients health. This is clearly stated in Dor Yeshorim's mission statement.

What doesn't make sense is why Dr. Ditchek did NOT go to an Orthodox forum to voice his issues, but rather to a non-Orthodox forum which is constantly deriding the populace for which Dor Yeshorim was created.

What indication do you have that a) he went to them and not they came to him and b) that he didn't attempt to bring this to the frum media and they turned him away?

Sounds like the groisser chachomim who turned a blind eye and a deaf ear to the victims of Kolko and Mondrowitz and then cried foul when the victims went and hired a lawyer and spoke to the press.

141

 Dec 24, 2008 at 11:31 AM Anonymous Says:

I was diagnosed at age 30, if I would have know at age 18 that I have Gaucher Disease, I probably would have never been able to do a Shidach. My wife is not a carrier, so none of my children have the disease, however they are all carriers.
In our community I must keep it a secret that I have the Disease otherwise, my children will not be able to do a Shidach, although they are 100% healthy. I go for treatment every 2 weeks at NYU, my insurance pays $8000 each time I go, it only costs me about $60 each time. I don't tell anyone where I am going to keep the disease private, even my children and in-laws, don't know that I have the disease.

As busy as Rabbi Eckstein is, he will always go out of his way to help someone with a genetic disease.

142

 Dec 24, 2008 at 11:27 AM Anonymous Says:

Reply to #119  
Anonymous Says:

ONE CAN TEST BOTH PARENTS FOR TAY-SACHS,AND IF THEY BOTH ARE
NEGATIVE,YOU DONT HAVE TO CHECK ALL THE SIBLINGS.

"ONE CAN TEST BOTH PARENTS FOR TAY-SACHS,AND IF THEY BOTH ARE
NEGATIVE,YOU DONT HAVE TO CHECK ALL THE SIBLINGS."

are you aware that DY tests for about 8 diseases BESIDES taysachs?? yes, the parents can be tested for all these diseases, but really, what's the point?? in all likelihood, at least one parent will probably test positive for at least one disease, so the kids will have to get tested anyway, so what is the goal?? why is it so hard to just test kids thru DY? what is it you are trying so hard to avoid?

143

 Dec 24, 2008 at 12:04 PM Anonymous Says:

Reply to #76  
Anonymous Says:

I (non American) and my fiance went to be tested. We requested Gaucher tests because I knew from years back in my country that I am a carrier. We were contacted and asked why we requested Gaucher testing. When I said that I knew I was a carrier they disqualified both of us from the program (we never got our money back).

My fiance was tested at NYU and Dor Yeshorim served no purpose for us. The experience left me with a bad impressino of their motives.

Is something missing in this story? Could it be that engaged couples have a different halachic status than single individuals?

144

 Dec 24, 2008 at 12:02 PM Anonymous Says:

Reply to #135  
parent in the parsha Says:

The problem remains, that if you don't do DY, people will not do shidduchim with you. I know cases where both parents were tested by DY years ago, (which means they are 'clean') and now because their children did not do DY, they are having problems with shidduchim. so the whole thing is a "scam". if the parents wee tested, then the children don't have to be. but if you say to a shadchan that you don't do DY, SHANDA ! THEY"RE HIDING SOMETHING!!
You can order all the same tests through your doctor ( i believe its called Ashkenazic testing) the insurance will pay, and you will have results.
There are MANY rabbonim and roshei Yeshivos that agree that testing needs to be done, but DO NOT AGREE WITH DY. The problem is, as sson as they say something everyone starts screaming DOR YESHORIM DOR YESHORIM!!
rabbi ekstein deserves credit and much s'char for bringing genetic testing out of the closet and into the limelight. Now that there no longer is a stigma, it is time for him to step aside, and let medical people do their job. there are many FRUM ERLCIHE doctors that will follow the Torah in their treatments, and not attempt to play G-D.
Dr. Deitchek is a ISH YASHER. HE has NO ULTERIOR MOTIVE, other then the HEALTH OF YIDDISHE KINDER!
SO which do you think is right??

"The problem remains, that if you don't do DY, people will not do shidduchim with you. I know cases where both parents were tested by DY years ago, (which means they are 'clean') and now because their children did not do DY, they are having problems with shidduchim. so the whole thing is a "scam". if the parents wee tested, then the children don't have to be. but if you say to a shadchan that you don't do DY, SHANDA ! THEY"RE HIDING SOMETHING!!
You can order all the same tests through your doctor ( i believe its called Ashkenazic testing) the insurance will pay, and you will have results.
There are MANY rabbonim and roshei Yeshivos that agree that testing needs to be done, but DO NOT AGREE WITH DY. The problem is, as sson as they say something everyone starts screaming DOR YESHORIM DOR YESHORIM!! rabbi ekstein deserves credit and much s'char for bringing genetic testing out of the closet and into the limelight. Now that there no longer is a stigma, it is time for him to step aside, and let medical people do their job. '

what planet are you living on?? no longer a stigma? are you nuts? i work in this field. i have clients with siblings who have these diseases. people dont want to date them bec most likely they are carriers. obviously no harm can come if they marry a non carrier, but people say "why should i take chances". of course they are being dumb, but to say there is no longer a stigma is far, far from the truth.
and while we are at it genius, if both parents tested fine thru dy, all that tells you is that BOTH parents arent carriers of the same disease. one parent could still be a carrier, therefore a child could be a carrier, so that proves absolutely nothing!! plus, so many diseases are now tested for that werent in our parents day, so your parents surely werent tested for cf and fd, etc

145

 Dec 24, 2008 at 12:00 PM Anonymous Says:

Reply to #110  
Anonymous Says:

Because most of want to know that the testing is being done under competent medical advice and in compliance with halachah. So we want to know the medical board isn't Dr. Suess and Dr. Laura and the rabbinical board is not made up of two yentas on the back bentch of the local shteebel who shmooze about the inyan between aliyos shabbos morning.

Any legal exposure there might be would be on the part of DY. Only they need be satisfied with and confident in the competence of their legal advisory board (which one could reasonably assume, as they are appointed by DY).

I have been involved with Dor Yeshorim from the beginning of the organization. For your information, Rabbi Eckstein's tests are double checked to ensure accuracy. This modest man, whose sole aim is to eliminate the incidence of these horrific diseases, never publicized the fact that leading labs were making mistakes. When he discovered this, he instituted procedures to ensure that samples were double checked.

146

 Dec 24, 2008 at 12:46 PM Doctor hcb Says:

acording to the chofetz chaim by halachah you have to notify if there is a medical condition withholding a medical condition regarding shadichum both by strangers that know or family members is gnivas daas and a lav daorys'o of vlifn`y eiver lo siten miecsha`l and the shidduch is subject to meakach tuas and in general against morality

147

 Dec 24, 2008 at 12:41 PM Anonymous Says:

Reply to #142  
Anonymous Says:

"ONE CAN TEST BOTH PARENTS FOR TAY-SACHS,AND IF THEY BOTH ARE
NEGATIVE,YOU DONT HAVE TO CHECK ALL THE SIBLINGS."

are you aware that DY tests for about 8 diseases BESIDES taysachs?? yes, the parents can be tested for all these diseases, but really, what's the point?? in all likelihood, at least one parent will probably test positive for at least one disease, so the kids will have to get tested anyway, so what is the goal?? why is it so hard to just test kids thru DY? what is it you are trying so hard to avoid?

cost!!(profits?)

148

 Dec 24, 2008 at 12:51 PM Anonymous Says:

"... leading labs were making mistakes...he instituted procedures to ensure that samples were double checked."

That's why you don't go to your neighborhood doctor for tests. STANDARD LAB TEST CAN BE IN ERROR UP TO 505 OF THE TIME.

149

 Dec 24, 2008 at 12:16 PM My Real Name Says:

Reply to #139  
glatekup Says:

as far as i know from a family member, they knew that they were both carriers and decided to marry anyway and take the chances. the statistics are that one out of four will be affected and three out of four will be carriers.

Not exactly. As I understand it, statistics relate to each child, not to the family unit or couple.

In other words, the odds are not that if they have four children only one would have Tay Sachs and three would only be carriers.

Every time two carriers produce a child there is a one in four chance that particular child will have Tay Sachs and a three in four chance that the child will be a carrier.

In other words, in a pool of a thousand children born to a pool of two-carrier couples roughly 250 will have Tay Sachs and roughly 750 will be carriers.

However, any particular two-carrier couple can end up with all or most of their children c"v being born with Tay Sachs no matter how many children they have, while another couple can end up with all or almost all of their children carriers.

150

 Dec 24, 2008 at 12:15 PM Bubby! Says:

Reply to #115  
webmom Says:

does that mean that Lubavitch are against taking the dor yeshorim tests?

All Lubavitch schools offer testing, both for boys and for girls. (I do not know why they "fell through the cracks".)

151

 Dec 24, 2008 at 01:02 PM Anonymous Says:

Reply to #144  
Anonymous Says:

"The problem remains, that if you don't do DY, people will not do shidduchim with you. I know cases where both parents were tested by DY years ago, (which means they are 'clean') and now because their children did not do DY, they are having problems with shidduchim. so the whole thing is a "scam". if the parents wee tested, then the children don't have to be. but if you say to a shadchan that you don't do DY, SHANDA ! THEY"RE HIDING SOMETHING!!
You can order all the same tests through your doctor ( i believe its called Ashkenazic testing) the insurance will pay, and you will have results.
There are MANY rabbonim and roshei Yeshivos that agree that testing needs to be done, but DO NOT AGREE WITH DY. The problem is, as sson as they say something everyone starts screaming DOR YESHORIM DOR YESHORIM!! rabbi ekstein deserves credit and much s'char for bringing genetic testing out of the closet and into the limelight. Now that there no longer is a stigma, it is time for him to step aside, and let medical people do their job. '

what planet are you living on?? no longer a stigma? are you nuts? i work in this field. i have clients with siblings who have these diseases. people dont want to date them bec most likely they are carriers. obviously no harm can come if they marry a non carrier, but people say "why should i take chances". of course they are being dumb, but to say there is no longer a stigma is far, far from the truth.
and while we are at it genius, if both parents tested fine thru dy, all that tells you is that BOTH parents arent carriers of the same disease. one parent could still be a carrier, therefore a child could be a carrier, so that proves absolutely nothing!! plus, so many diseases are now tested for that werent in our parents day, so your parents surely werent tested for cf and fd, etc

You are way out of reality. I am sorry your family has health issues, but I think that is causing you emotional problems.

The following is a story about someone I know, that I am telling you to demonstrate how a person can have jaded thinking:

I became friendly with a single guy who would complain to me how messed up the shidduchim process is and how shadchanim are speaking lashon hara about him that he strings women along and is a confused person. His brother also came to me to complain about it, and used it as a launch point to slander other areas of the frum world. I felt sorry for this single man, and my wife and I set him up with several high quality women. Each one he would date for a while and when things were going well, he all of a sudden dumps each one for ridiculous reasons (one was because she doesn't go to movies, and even though she doesn't mind if he watches). After that, I told him I wasn't going to set him up with any more women. I guess that means I'm one of those evil shadchanim now.

152

 Dec 24, 2008 at 01:02 PM What about this idea.... Says:

Why not test for Gaucher at DY but not include it as part of the compatability test/criteria in embedded in the "number".

If the individual has the disease, then let them know, so they can be treated.

Once a couple is married, allow them to request Gaucher compatability so that they can be aware for their future children (e.g. if they are both carriers).

Awareness allows for early detection and possible treatment The resulting quality of life (from a physical perspective), will be so much better, l'aniyas dayti.

153

 Dec 24, 2008 at 12:58 PM Anonymous Says:

Reply to #147  
Anonymous Says:

cost!!(profits?)

the commenters above have all established that DY is cheaper than private testing, so again, what are you trying to avoid by bypassing (and bashing!) the accepted system??

154

 Dec 24, 2008 at 01:11 PM DEEPTHINKER Says:

FOR THOSE OF YOU WHO WANT TO GET DEEPER INTO THIS WHOLE ISSUE:

There is a pseudo-science called "Eugenics." It means the "Perfection" of Mankind by genetic selection--the completion of Darwin, the atheist's< Evolution of Mankind.

Hitler was an avid practitioner of Eugenics, as were his fervent admirers in the U.S., such as margaret Sanger, founder of "Planned" Parenthood. Hitler actually executed the mentally impaired in gas chambers, before he started doing the same to the Jews, who, he claimed, were also contaminating the genetic pool of Germany.

If you take Genetic Testing to the extreme, you will create a "Shidduch Crisis" that will make today's problems pall by comparison.

None of us is "Perfect." It's all a statistical numbers game. You need a tremendous amount of SiYaTa DishMaya to do just enough testing to eliminate the most common problems, without going to extremes that will destroy the Orthodox Jewish Community.

The Atheist Secularists at The Jewish Week newspaper couldn't care less. They would rather see less Jews who are more "Perfect."

We rely on HaShem to protect us, after we have taken reasonable precautions.

155

 Dec 24, 2008 at 02:10 PM rodney st Says:

Rav eckstein is a tzdaik shame on u for bashing him its very easy after all the yrs he put in to destry him

156

 Dec 24, 2008 at 02:00 PM Anonymous Says:

Reply to #149  
My Real Name Says:

Not exactly. As I understand it, statistics relate to each child, not to the family unit or couple.

In other words, the odds are not that if they have four children only one would have Tay Sachs and three would only be carriers.

Every time two carriers produce a child there is a one in four chance that particular child will have Tay Sachs and a three in four chance that the child will be a carrier.

In other words, in a pool of a thousand children born to a pool of two-carrier couples roughly 250 will have Tay Sachs and roughly 750 will be carriers.

However, any particular two-carrier couple can end up with all or most of their children c"v being born with Tay Sachs no matter how many children they have, while another couple can end up with all or almost all of their children carriers.

Couples who are carriers of Tay Sachs can have the fetus tested at a very early stage to see if it has Tay Sachs so that it could be aborted.

I personally know of a yiddishe couple whose first child was born with Tay Sachs and since then, as soon as she's pregnant she gets tested and has prevented already more than 1 Tay Sachs pregnancy to continue - (it's halachically permissable - but there are special rules... They work with a Rav)

157

 Dec 24, 2008 at 01:28 PM Anonymous Says:

Reply to #151  
Anonymous Says:

You are way out of reality. I am sorry your family has health issues, but I think that is causing you emotional problems.

The following is a story about someone I know, that I am telling you to demonstrate how a person can have jaded thinking:

I became friendly with a single guy who would complain to me how messed up the shidduchim process is and how shadchanim are speaking lashon hara about him that he strings women along and is a confused person. His brother also came to me to complain about it, and used it as a launch point to slander other areas of the frum world. I felt sorry for this single man, and my wife and I set him up with several high quality women. Each one he would date for a while and when things were going well, he all of a sudden dumps each one for ridiculous reasons (one was because she doesn't go to movies, and even though she doesn't mind if he watches). After that, I told him I wasn't going to set him up with any more women. I guess that means I'm one of those evil shadchanim now.

you didnt read my post . B"H nobody in my family is known to have any of these diseases. I do however work with people with these diseases. and i am quite in reality. ask anybody involved with these families. they will tell you the stigmas are there, alive and well.

158

 Dec 24, 2008 at 02:35 PM Anonymous Says:

Reply to #141  
Anonymous Says:

I was diagnosed at age 30, if I would have know at age 18 that I have Gaucher Disease, I probably would have never been able to do a Shidach. My wife is not a carrier, so none of my children have the disease, however they are all carriers.
In our community I must keep it a secret that I have the Disease otherwise, my children will not be able to do a Shidach, although they are 100% healthy. I go for treatment every 2 weeks at NYU, my insurance pays $8000 each time I go, it only costs me about $60 each time. I don't tell anyone where I am going to keep the disease private, even my children and in-laws, don't know that I have the disease.

As busy as Rabbi Eckstein is, he will always go out of his way to help someone with a genetic disease.

Yes, but how would you suggest stopping to spread the disease? If your kids are carriers and their prospective shiddch are carriers, would you want them to marry, knowing your grandchildren might suffer? Or is it better to get tested and not have them marry a carrier? Yes, the same way DY provides the results for Tay Sachs, it could provide for other diseases.

159

 Dec 24, 2008 at 02:34 PM glatekup Says:

Reply to #156  
Anonymous Says:

Couples who are carriers of Tay Sachs can have the fetus tested at a very early stage to see if it has Tay Sachs so that it could be aborted.

I personally know of a yiddishe couple whose first child was born with Tay Sachs and since then, as soon as she's pregnant she gets tested and has prevented already more than 1 Tay Sachs pregnancy to continue - (it's halachically permissable - but there are special rules... They work with a Rav)

Halachacilly pernissible according to some poskim,namely the "tzitz eliezer". Assur according to reb moshe feinstien and the gedolei haposkim in eretz yisroel.including rav wozner, rav eliyashiv and rav nissim karelitz

160

 Dec 24, 2008 at 02:33 PM mnachem Says:

r' ekstein has lost 3or 4 children befor he made this orgnetion if ther is anyone who cars for klal ysreal is it r' ekstein its a shem to come out and say anythink wrong he didnt have nobody helping him when he startet know when he hase broken the wall and he has don the most he can how can you critiseizd a person who gave his life for klal yeasruel

161

 Dec 24, 2008 at 02:32 PM Anonymous Says:

Reply to #149  
My Real Name Says:

Not exactly. As I understand it, statistics relate to each child, not to the family unit or couple.

In other words, the odds are not that if they have four children only one would have Tay Sachs and three would only be carriers.

Every time two carriers produce a child there is a one in four chance that particular child will have Tay Sachs and a three in four chance that the child will be a carrier.

In other words, in a pool of a thousand children born to a pool of two-carrier couples roughly 250 will have Tay Sachs and roughly 750 will be carriers.

However, any particular two-carrier couple can end up with all or most of their children c"v being born with Tay Sachs no matter how many children they have, while another couple can end up with all or almost all of their children carriers.


A person can only be affected by Tay-Sachs Disease when two carrier parents pass a Hex-A gene mutation to their child. When two-carrier parents have children, three outcomes are possible.
1) Both parents do not pass the gene mutation to the child – child will be normal.
2) One parent pass the gene mutation to the child but the other does not – child will not suffer from TSD but will be a carrier of the Tay-Sachs gene.
3)Both parents pass the gene mutation to the child. Child will suffer from TSD and depending upon the mutations passed will likely die at a very young age.

As we look at these four possible outcome – there is a 25% chance both parents do not pass the gene mutation to the child; a 50% chance one of the parents passes the gene mutations; and a 25% chance both parents pass the gene mutation.

If only one of the parents is a carrier of the Tay-Sachs gene mutation then only two outcomes are possible:
1. That one parent passes the gene mutation to the child and the child is a carrier of the Tay-Sachs gene
2. The parent does not pass the gene mutation and the child is normal and not a carrier
A one-carrier family has a 50% chance that no gene mutation is passed and the children are not carriers and a 50% chance the gene mutation is passed and the child is a carrier. A one-carrier family cannot have an affected child.

162

 Dec 24, 2008 at 02:30 PM Anonymous Says:

Reply to #157  
Anonymous Says:

you didnt read my post . B"H nobody in my family is known to have any of these diseases. I do however work with people with these diseases. and i am quite in reality. ask anybody involved with these families. they will tell you the stigmas are there, alive and well.

DY was designed to resolve the stigma issue. Who cares what a person's family history is if the DY results are in the clear?

163

 Dec 24, 2008 at 02:23 PM Anonymous Says:

Reply to #154  
DEEPTHINKER Says:

FOR THOSE OF YOU WHO WANT TO GET DEEPER INTO THIS WHOLE ISSUE:

There is a pseudo-science called "Eugenics." It means the "Perfection" of Mankind by genetic selection--the completion of Darwin, the atheist's< Evolution of Mankind.

Hitler was an avid practitioner of Eugenics, as were his fervent admirers in the U.S., such as margaret Sanger, founder of "Planned" Parenthood. Hitler actually executed the mentally impaired in gas chambers, before he started doing the same to the Jews, who, he claimed, were also contaminating the genetic pool of Germany.

If you take Genetic Testing to the extreme, you will create a "Shidduch Crisis" that will make today's problems pall by comparison.

None of us is "Perfect." It's all a statistical numbers game. You need a tremendous amount of SiYaTa DishMaya to do just enough testing to eliminate the most common problems, without going to extremes that will destroy the Orthodox Jewish Community.

The Atheist Secularists at The Jewish Week newspaper couldn't care less. They would rather see less Jews who are more "Perfect."

We rely on HaShem to protect us, after we have taken reasonable precautions.

Your hishdadlus is to get testing for all COMMON genetic defects, not just Tay Sachs.
Having genetic testing to ensure that one’s children does not need to suffer a short or long painful life is NOT Eugenics. The genepool needs to be diversified in ensure that the disease is eradicated through natural selection. So yes, if the “frum” community stops marriages from two people who have Tay Sachs, or any other disease..BORUCH HASHEM!! The devastation an ill child can have on a family, and community is endless. We spend $100’s of dollars on shtus from car leases to cell phones, but we can not get tested by a REAL genetic counselor? Is life to cheap to spend a few hundred dollars? How much more will you be spending for special medication, hospital bills, special needs schools, etc for one genetic mistake? Is it worth the risk? Tell that to the parents or children that are suffering.
.

164

 Dec 24, 2008 at 02:51 PM Anonymous Says:

Reply to #156  
Anonymous Says:

Couples who are carriers of Tay Sachs can have the fetus tested at a very early stage to see if it has Tay Sachs so that it could be aborted.

I personally know of a yiddishe couple whose first child was born with Tay Sachs and since then, as soon as she's pregnant she gets tested and has prevented already more than 1 Tay Sachs pregnancy to continue - (it's halachically permissable - but there are special rules... They work with a Rav)

Now let's consider the options: Testing with Dor Yeshorim before a couple even meets, so that two beautiful neshamos do not have to live with the anxiety and trauma of abortion, OR destroying the system and once again ushering in a world of trauma, stigma, innocent children born with an inevitably fatal and tormenting disease and/or abortion with or without the blessing of a rav. Which do you think makes for happier marriages?

165

 Dec 24, 2008 at 02:44 PM Nili Says:

why doesn't the doctor start his own Dor Yashurim and do it his way?

166

 Dec 24, 2008 at 03:20 PM Anonymous Says:

Reply to #159  
glatekup Says:

Halachacilly pernissible according to some poskim,namely the "tzitz eliezer". Assur according to reb moshe feinstien and the gedolei haposkim in eretz yisroel.including rav wozner, rav eliyashiv and rav nissim karelitz

No such thing as assur or mutar according to this posaik or that posaik.

Every case must be considered a different shiloh.

167

 Dec 24, 2008 at 03:15 PM Anonymous Says:

Reply to #96  
Anonymous Says:

Iam aware that both in England and Belgium there has been a lot of negative publicity for DY
There are hospitals in England who do free tests and tell you the results
If a couple are both negative the children are negative and there is no need to test the children DY will lose a lot of business
They will not give you a compatibility confirmation if you have tested elsewhere because they lost your business
They also sell samples of the blood
DY is known to be a money making venture
Why do they not open their books for public scrutinity like all other public organisations

What is your basis for saying that is a money-making venture? Who told you that they sell blood samples?

Until a person has lost a child, the person will never have a real apreciation of what Dor Yeshorim is.

168

 Dec 24, 2008 at 03:12 PM Anonymous Says:

Reply to #165  
Nili Says:

why doesn't the doctor start his own Dor Yashurim and do it his way?

most intelligent people go to their own doctor for testing and not DY. WHy take a chance with life?

169

 Dec 24, 2008 at 03:06 PM Anonymous Says:

Reply to #107  
Anonymous Says:

I'm not sure how my comment could be misunderstood but I'll try to make the meaning of my comment a little clearer.

I'd like to know if anyone reading VIN can share with us the opinion of any widely recognised posaik regarding this issue. Not universally accepted (as this does not exist) by widely recognised, by which I mean a person whose opinion is often sought by a substantial segment of the frum world when issues arise for which the opinions of the majority of LOR's would not be considered of interest to most Orthodox Jews.

If one were to take a look in the Igros Moshe one can see Rav Moshe's a"h shitah on how Dor Yeshorim should conduct Tay Sachs testing.

Obviously Rav Moshe's a"h opinion was not universally accepted as the final word his shitah on this issue would have been one on which to base one's opinion and its inclusion in one's comments above would have made the comment worthy of consideration.

For without quoting a respectable
halachic source, be it Litvish, Yekkish, Chassidish, Sephardesheh, etc, the opinions of the rest of us are really of no consequence.

The Tzitz Eliezer Z"tl is very blunt that pre-marital genetic testing is a must. The Lubavitcher Rebbe Z"tl had the Rov of Crown Heights - Rav Marlow Z"tl - write a letter telling his Chasidim to use Dor Yeshorim. Rav Schwab Z"tl was extremely adamant that this testing must be done. If you contact Dor Yeshorim, they will send you copies of these letters & many more.

To condemn Dor Yesharim for not letting clients with Gauchers Disease know that they have it should be decided by the Daas Torah that has guided the organization from its inception, rather than by Medical Doctors who aren't aware of all of the issues involved & especially not by bloggers who don't realize the full impact of this issue.

170

 Dec 24, 2008 at 04:10 PM Anonymous Says:

Reply to #158  
Anonymous Says:

Yes, but how would you suggest stopping to spread the disease? If your kids are carriers and their prospective shiddch are carriers, would you want them to marry, knowing your grandchildren might suffer? Or is it better to get tested and not have them marry a carrier? Yes, the same way DY provides the results for Tay Sachs, it could provide for other diseases.

Upon request they do a Gaucher compatibility check. As I know my children are cariers, I will ask for the check.

171

 Dec 24, 2008 at 04:07 PM Anonymous Says:

Reply to #167  
Anonymous Says:

What is your basis for saying that is a money-making venture? Who told you that they sell blood samples?

Until a person has lost a child, the person will never have a real apreciation of what Dor Yeshorim is.

and most people who have lost a child will never wish they hadnt been born in the first place

172

 Dec 24, 2008 at 04:06 PM Non-Profit Says:

Dor Yeshorim and other Non-Profit hate to be in the limelight. They dont want people to start asking questions. They hate transparency, accountability and governance. I have a few stupid questions. who are the gedolim? who else gets his data, does he share his data with universities, research centers. does he get grants.
are there conflicts of interest.

173

 Dec 24, 2008 at 05:15 PM Anonymous Says:

Reply to #172  
Non-Profit Says:

Dor Yeshorim and other Non-Profit hate to be in the limelight. They dont want people to start asking questions. They hate transparency, accountability and governance. I have a few stupid questions. who are the gedolim? who else gets his data, does he share his data with universities, research centers. does he get grants.
are there conflicts of interest.

It's very easy to second guess the Dor Yeshorim agenda. Instead of shooting off your keyboard irresponsibly, why don't YOU do the due diligence & put some substance behind your claims.

With all the stupidity (it's more charitable to call it that, rather than the Rishus & Shefichas Domim which it is) being spouted in the comments, I can understand why "They hate transparency, accountability and governance." I don't think any of the commenters - including myself - could do a better job.

174

 Dec 24, 2008 at 05:13 PM Anonymous Says:

am i missing something here .? if you think you have gouchers or any disease for that matter why dont you go to a reg. lab. If your doctor orders the test its covered any way, dor yesharim costs, so why is everyone going ballistic here?

175

 Dec 24, 2008 at 05:11 PM Anonymous Says:

If early treatment would prevent people from suffering with Gaucher's, why don't hospitals routinely test newborns, like they do for PKU? Don't blame D.Y. for not informing the people who are being tested.

176

 Dec 24, 2008 at 04:58 PM g. rosenberg Says:

non-profit, and who are you to ask? have you donated substantially of time and money to help Dor Yeshorim? Ah, I thought not -- just an armchair philosopher out to bash those who do. You can start your own non-profit. No one is stopping youl. And do make sure to be transparent.

177

 Dec 24, 2008 at 04:54 PM Anonymous Says:

one with a few children can save money by testing a DY test for the father and mother instead of each child sepretly

178

 Dec 24, 2008 at 03:46 PM you're nuts Says:

Reply to #4  
Anonymous Says:

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!!!

This man lost actual real children to this disease, and he's trying to help others not expierience that pain. But YOU can't trust him because of your obvious stereotype against chareidim.
Is that more pathatic, or ill informed?

179

 Dec 24, 2008 at 03:45 PM glatekup Says:

Reply to #166  
Anonymous Says:

No such thing as assur or mutar according to this posaik or that posaik.

Every case must be considered a different shiloh.

Yes a shaila must be asked but generally if you look in the "igros moshe" reb moshe is very against abortion for tay-sachs. He is not mechalek if it is within 40 days or three months or even further. The tzitz eliezer allows abortions forsure at the biginning stages and in some cases even later. Most poskim in america tend to follow the shita of the tzitz eliezer because he is maikel. One of the big poskim who follows this is reb dovid cohen. In eretz yisroel most poskim follow the more stringent rule and do not allow it. But of course everyone must follow his posek if a question comes up.

180

 Dec 24, 2008 at 03:03 PM Anonymous Says:

Reply to #141  
Anonymous Says:

I was diagnosed at age 30, if I would have know at age 18 that I have Gaucher Disease, I probably would have never been able to do a Shidach. My wife is not a carrier, so none of my children have the disease, however they are all carriers.
In our community I must keep it a secret that I have the Disease otherwise, my children will not be able to do a Shidach, although they are 100% healthy. I go for treatment every 2 weeks at NYU, my insurance pays $8000 each time I go, it only costs me about $60 each time. I don't tell anyone where I am going to keep the disease private, even my children and in-laws, don't know that I have the disease.

As busy as Rabbi Eckstein is, he will always go out of his way to help someone with a genetic disease.

I respect your quest for privavcy but you owe it to your children for them to know. It involves them too. It is genetic!!

181

 Dec 24, 2008 at 06:12 PM glatekup Says:

Reply to #177  
Anonymous Says:

one with a few children can save money by testing a DY test for the father and mother instead of each child sepretly

Because of ignorant people like you DY was created. You need to learn genetics.

182

 Dec 24, 2008 at 06:27 PM DY Board Member Says:

The Jewish Week, and, all the so-called medical experts, are missing the boat. Dor Yeshorim's (DY) policy is to to test for Gaucher's "by request only". That is because the majority of the individuals who have Gaucher's have a very mild form of the disease. Not a reason to consider a prospective match to be incompatible and stop a possible match from coming to fruition. When DY is informed that a particular match is requesting the additional Gaucher's testing that is proof that there is Gaucher's in the family and that the family has received medical advice regarding the disease. Otherwise the individual would not be requesting testing for Gaucher's. If so, can someone explain what information DY is witholding?

PS: This discussion is a very technical one and is not a subject that should be discussed in an open forum by the general public. The decision for DY to test for Gaucher's "by request only" did not happen without serious deliberation between its Rabbinic and Medical Advisors. While there are always individuals - even several from the medical profession - who may disagree with some of DY's policies, these policies have the backing of the vast majority of our Ziknei Hador, Rabbonim and Medical authorities worldwide.

Signed - A Dor Yeshorim Board Member

183

 Dec 24, 2008 at 06:42 PM Anonymous Says:

This public policy issue is for the Gedolei HaPoskim to decide. What this or that pediatrician thinks or says--no matter how qualified that general pediatrician might be--is halachically meaningless. The Gedolim have to decide whether the risks of scaring off people from being tested and / or preventing possible shidduchim outweighs the benefit of preventing marriages between two carriers.

Anyone can be tested for Gaucher's, just as anyone can be tested for being a carrier of Tay Sachs or another disorder.

Dor Yeshorim apparently chooses to test only for fatal diseases.

Anyone who wishes them to test for non-fatal, treatable diseases should seek counsel with the Gedolim rather than choosing to criticize someone in public.

The NY Jewish Week chooses, as usual, to find fault with the frum community.

And Vos Iz Neias chooses to publicize this article.

184

 Dec 24, 2008 at 06:36 PM glatekup Says:

Reply to #182  
DY Board Member Says:

The Jewish Week, and, all the so-called medical experts, are missing the boat. Dor Yeshorim's (DY) policy is to to test for Gaucher's "by request only". That is because the majority of the individuals who have Gaucher's have a very mild form of the disease. Not a reason to consider a prospective match to be incompatible and stop a possible match from coming to fruition. When DY is informed that a particular match is requesting the additional Gaucher's testing that is proof that there is Gaucher's in the family and that the family has received medical advice regarding the disease. Otherwise the individual would not be requesting testing for Gaucher's. If so, can someone explain what information DY is witholding?

PS: This discussion is a very technical one and is not a subject that should be discussed in an open forum by the general public. The decision for DY to test for Gaucher's "by request only" did not happen without serious deliberation between its Rabbinic and Medical Advisors. While there are always individuals - even several from the medical profession - who may disagree with some of DY's policies, these policies have the backing of the vast majority of our Ziknei Hador, Rabbonim and Medical authorities worldwide.

Signed - A Dor Yeshorim Board Member

Finally. We were waiting for someone from the board. Thank you.

185

 Dec 24, 2008 at 08:16 PM Anonymous Says:

184, I'm from the board too. I think we're all from the board. Until someone signs with their name, they're not from the board.

186

 Dec 24, 2008 at 08:12 PM Anonymous Says:

Reply to #153  
Anonymous Says:

the commenters above have all established that DY is cheaper than private testing, so again, what are you trying to avoid by bypassing (and bashing!) the accepted system??

153, DY is not cheaper if you have insurance. My insurance covered ALL the tests.

187

 Dec 24, 2008 at 07:57 PM Anonymous Says:

Rabbi Eckstein founded the DY and runs it all by himself.
Just like Rabbi Hershel Webber founded HATZHALA and was runing it for many years, they both mean it well and Leshem Shamiyim.

However just as Rabbi Hershel Weber came the time to step aside and let it grow the right way, so came the time for Rabbi Yosell Eckstein to step aside and hand it over to the next generation, they will reform it to the needs of the world as a whole taking into consideration all the people from all the country's.

Otherwise sooner or later he will have to leave under fire, as you can see just by reading all the comments.

188

 Dec 24, 2008 at 08:55 PM glatekup Says:

Reply to #186  
Anonymous Says:

153, DY is not cheaper if you have insurance. My insurance covered ALL the tests.

Good for you. What about your kallah? How long did it take to get results of all the tests? By a lot of frum yiddin there is no time to wait for results and that is why dor yesharim is done way before.

189

 Dec 24, 2008 at 07:22 PM Anonymous Says:

Dr.Ditchek Might be right

Rabbi Eckstien might be right

The "Jewish Week" a blatant anti religous tabloid was not the appropriate venue to debate this sensative matter.

190

 Dec 24, 2008 at 07:12 PM Anonymous Says:

There is always some shmuck who shows up years later to tell you how you should have done it. Let Diechek go back to whatever it is he does and Camp Simcha and open his own Dor Tovim and Yeshorim.

191

 Dec 24, 2008 at 09:31 PM Last Words from Dor Yeshorim Board member Says:

Sorry to disappoint the skeptics, cynics and uneducated. Rabbi Ekstein is a wonderful individual and has built an organization that is responsible for saving many Jewish families the agony of having children with fatal recessive genetic diseases. But he does have an active Board.

Because you don't understand something, you might consider that the fault lies with you - you might be misinformed, don't understand all the complexities of the issue, or didn't spend enough time trying to really understand why an organization is so set in doing their work a certain way.

The Jewish Week and yes, even Dr. Ditchek, do not have over 25 years of genetic experience. Because the writer of the article spent several hours interviewing, surfing the web... etc. does not make him an expert in the field. Exactly the opposite is true, it shows his complete ignorance of the facts and the true motive of his article. And while Dr Ditchek may be a wonderful person, he might not have been correctly quoted or is misinformed about DY's methods or procedures. What ever method he could have used to bring about a discussion regarding Gaucher testing, talking to a Jewish Week writer, who seams eager to spread innuendoes regarding DY and its founder is surely not the way.

192

 Dec 24, 2008 at 09:25 PM Anonymous Says:

#190, your language and tone are inappropriate!

193

 Dec 24, 2008 at 09:23 PM Anonymous Says:

If you have Oxford Health Insurance and your doctor prescribes the same genetic tests that DY offers, you and your spouse can be tested for FREE and save your children the pain and time, and you can save much money. You will have your results for yourself. If you both test negative as carriers then your children do not have to do DY as they! are not carriers!

194

 Dec 24, 2008 at 09:22 PM Anonymous Says:

Reply to #186  
Anonymous Says:

153, DY is not cheaper if you have insurance. My insurance covered ALL the tests.

i"m much calmmer not to know whats the results, i live calmmer.
thats why i'ld rather not go to a docter.

195

 Dec 24, 2008 at 09:18 PM Anonymous Says:

Reply to #187  
Anonymous Says:

Rabbi Eckstein founded the DY and runs it all by himself.
Just like Rabbi Hershel Webber founded HATZHALA and was runing it for many years, they both mean it well and Leshem Shamiyim.

However just as Rabbi Hershel Weber came the time to step aside and let it grow the right way, so came the time for Rabbi Yosell Eckstein to step aside and hand it over to the next generation, they will reform it to the needs of the world as a whole taking into consideration all the people from all the country's.

Otherwise sooner or later he will have to leave under fire, as you can see just by reading all the comments.

Hello sir!
this is a personal org. he could direct it if he wants,
why should he give it up, because you said so?
hatzolah became a world wide org. each ind. location has its own director & overhead.
For that reason Rabbi weber shifted it off his back.
"lol"

196

 Dec 24, 2008 at 09:10 PM Anonymous Says:

Reply to #180  
Anonymous Says:

I respect your quest for privavcy but you owe it to your children for them to know. It involves them too. It is genetic!!

My children are only cariers, they don't need to know, although I will tell them when they are older. 1 out of 12 Ashkenazim are carriers.

At least this article is making people aware of the Disease. Genzyme can't seem to make us aware even with the Millions they spend on awareness advertising, our doctors don't diagonse it.

197

 Dec 24, 2008 at 09:06 PM Anonymous Says:

Remember that, this program is based to avoid two sided positive matches to match up,
If anybody wants to know what his results are, please go take a blood test.
"lol"

198

 Dec 24, 2008 at 10:00 PM glatekup Says:

Reply to #193  
Anonymous Says:

If you have Oxford Health Insurance and your doctor prescribes the same genetic tests that DY offers, you and your spouse can be tested for FREE and save your children the pain and time, and you can save much money. You will have your results for yourself. If you both test negative as carriers then your children do not have to do DY as they! are not carriers!

What about your boys/girls chosson/kallah. You are so ignorant.

199

 Dec 24, 2008 at 09:54 PM glatekup Says:

Reply to #187  
Anonymous Says:

Rabbi Eckstein founded the DY and runs it all by himself.
Just like Rabbi Hershel Webber founded HATZHALA and was runing it for many years, they both mean it well and Leshem Shamiyim.

However just as Rabbi Hershel Weber came the time to step aside and let it grow the right way, so came the time for Rabbi Yosell Eckstein to step aside and hand it over to the next generation, they will reform it to the needs of the world as a whole taking into consideration all the people from all the country's.

Otherwise sooner or later he will have to leave under fire, as you can see just by reading all the comments.

Actually most of the comments are pro DY and rabbi ekstien.

200

 Dec 24, 2008 at 09:50 PM DY Board Member Says:

Reply to #193  
Anonymous Says:

If you have Oxford Health Insurance and your doctor prescribes the same genetic tests that DY offers, you and your spouse can be tested for FREE and save your children the pain and time, and you can save much money. You will have your results for yourself. If you both test negative as carriers then your children do not have to do DY as they! are not carriers!

What happens if you and your wife test positive for one of the diseases? Do you now need to divorce? Stop having children? Just because you have several children without any genetic diseases doesn't mean that that will continue to happen. There is a 25% chance for having a child born that is afflicted with the disease in each pregnancy.

The DY system works, is testing nearly 20,000 marriageable age children every year. It's simple, thought out and has overwhelming approval across the medical and rabbinic worlds.

If you have better system that can replicate the success of DY then launch it. If not, stop the rechilus.

201

 Dec 24, 2008 at 09:40 PM Anonymous Says:

188, it took about a week, and hers paid for it as well.

202

 Dec 24, 2008 at 09:41 PM DY Board Member Says:

Reply to #186  
Anonymous Says:

153, DY is not cheaper if you have insurance. My insurance covered ALL the tests.

If you actually tested privately for the entire panel that DY tests for, there would be a 20% chance that you would be carrier for one of the diseases. When a shidduch is then proposed what did you do? Did you tell the shadchan that you were a carrier? Or, did you then run to be covered by DY testing so that all the info remains confidential? Which by the way is against the DY rules. Once you test privately you can no longer avail yourself of the DY method. DY may not know but it is gezaylah.

203

 Dec 24, 2008 at 11:53 PM Anonymous Says:

it is gezayalah? that is ridiculous. if my child tested privately and was a carrier of a disease, then went to dy, he and his shidduch were both compatible, what is the problem? dy got paid, couple were compatible, isn't that what dy is there for?

204

 Dec 25, 2008 at 12:16 AM Anonymous Says:

Reply to #200  
DY Board Member Says:

What happens if you and your wife test positive for one of the diseases? Do you now need to divorce? Stop having children? Just because you have several children without any genetic diseases doesn't mean that that will continue to happen. There is a 25% chance for having a child born that is afflicted with the disease in each pregnancy.

The DY system works, is testing nearly 20,000 marriageable age children every year. It's simple, thought out and has overwhelming approval across the medical and rabbinic worlds.

If you have better system that can replicate the success of DY then launch it. If not, stop the rechilus.

Is that a threat? if they have a better idea? So because you are the only act in town makes you the best by ddefault???
you arent perfect. the sooner you admit that sooner you can move on that nothing is perfect and everything has holes and flaws, even yes even dor yeshorim.

205

 Dec 25, 2008 at 12:15 AM Anonymous Says:

Reply to #200  
DY Board Member Says:

What happens if you and your wife test positive for one of the diseases? Do you now need to divorce? Stop having children? Just because you have several children without any genetic diseases doesn't mean that that will continue to happen. There is a 25% chance for having a child born that is afflicted with the disease in each pregnancy.

The DY system works, is testing nearly 20,000 marriageable age children every year. It's simple, thought out and has overwhelming approval across the medical and rabbinic worlds.

If you have better system that can replicate the success of DY then launch it. If not, stop the rechilus.

LOL!!!
"DY system works, is testing nearly 20,000 marriageable age children every year."


THE OXYMORON statement of the year!
I truly hope you arent an "DY Board Member" !

Children....ha! FYI, kids, if you know your parents arent carriers, guess what? you dont have to take the DY test!!!

206

 Dec 25, 2008 at 12:29 AM Reader Says:

Reply to #191  
Last Words from Dor Yeshorim Board member Says:

Sorry to disappoint the skeptics, cynics and uneducated. Rabbi Ekstein is a wonderful individual and has built an organization that is responsible for saving many Jewish families the agony of having children with fatal recessive genetic diseases. But he does have an active Board.

Because you don't understand something, you might consider that the fault lies with you - you might be misinformed, don't understand all the complexities of the issue, or didn't spend enough time trying to really understand why an organization is so set in doing their work a certain way.

The Jewish Week and yes, even Dr. Ditchek, do not have over 25 years of genetic experience. Because the writer of the article spent several hours interviewing, surfing the web... etc. does not make him an expert in the field. Exactly the opposite is true, it shows his complete ignorance of the facts and the true motive of his article. And while Dr Ditchek may be a wonderful person, he might not have been correctly quoted or is misinformed about DY's methods or procedures. What ever method he could have used to bring about a discussion regarding Gaucher testing, talking to a Jewish Week writer, who seams eager to spread innuendoes regarding DY and its founder is surely not the way.

Why are people blaming the Jewish Week?
BTW Ever wonder how much a role this craziness plays in the "shidduch crisis" ???

207

 Dec 25, 2008 at 12:28 AM Anonymous Says:

Reply to #191  
Last Words from Dor Yeshorim Board member Says:

Sorry to disappoint the skeptics, cynics and uneducated. Rabbi Ekstein is a wonderful individual and has built an organization that is responsible for saving many Jewish families the agony of having children with fatal recessive genetic diseases. But he does have an active Board.

Because you don't understand something, you might consider that the fault lies with you - you might be misinformed, don't understand all the complexities of the issue, or didn't spend enough time trying to really understand why an organization is so set in doing their work a certain way.

The Jewish Week and yes, even Dr. Ditchek, do not have over 25 years of genetic experience. Because the writer of the article spent several hours interviewing, surfing the web... etc. does not make him an expert in the field. Exactly the opposite is true, it shows his complete ignorance of the facts and the true motive of his article. And while Dr Ditchek may be a wonderful person, he might not have been correctly quoted or is misinformed about DY's methods or procedures. What ever method he could have used to bring about a discussion regarding Gaucher testing, talking to a Jewish Week writer, who seams eager to spread innuendoes regarding DY and its founder is surely not the way.

Why would you doubt that the Doctor was not "informed" ? How stupid are you? Please. he knows well enough to know what he is talknig about. dont make excuses because you dont want to accept the fact that someone might be doing something that isnt perfect.

208

 Dec 25, 2008 at 12:27 AM Anonymous Says:

Reply to #196  
Anonymous Says:

My children are only cariers, they don't need to know, although I will tell them when they are older. 1 out of 12 Ashkenazim are carriers.

At least this article is making people aware of the Disease. Genzyme can't seem to make us aware even with the Millions they spend on awareness advertising, our doctors don't diagonse it.

Great and does anyone know the statistics that we are alll probability carriers of the BRCA1 gene that causes Breast cancer in ahskenazic (eastern european) Jewish Women!?!

209

 Dec 25, 2008 at 12:22 AM Constituent Says:

Reply to #182  
DY Board Member Says:

The Jewish Week, and, all the so-called medical experts, are missing the boat. Dor Yeshorim's (DY) policy is to to test for Gaucher's "by request only". That is because the majority of the individuals who have Gaucher's have a very mild form of the disease. Not a reason to consider a prospective match to be incompatible and stop a possible match from coming to fruition. When DY is informed that a particular match is requesting the additional Gaucher's testing that is proof that there is Gaucher's in the family and that the family has received medical advice regarding the disease. Otherwise the individual would not be requesting testing for Gaucher's. If so, can someone explain what information DY is witholding?

PS: This discussion is a very technical one and is not a subject that should be discussed in an open forum by the general public. The decision for DY to test for Gaucher's "by request only" did not happen without serious deliberation between its Rabbinic and Medical Advisors. While there are always individuals - even several from the medical profession - who may disagree with some of DY's policies, these policies have the backing of the vast majority of our Ziknei Hador, Rabbonim and Medical authorities worldwide.

Signed - A Dor Yeshorim Board Member

If you truly are a board member of dor yeshorim as you anclaim to be (and on the other posts) then you should be ashamed of yourself. Why dont you go ahead and talk to a newspaper? why resort to silly arguments on comments on the blogs that not a whole lot of people bother to read in the first place?
Seriously! like come on! this is pathetic. also its typical to snap back with criticism of the relgiosity of the newspaper instead of the issue at hand. so not impressed at all.

Personally, i just dont beleive in dor yeshorim and will never condone it.

210

 Dec 25, 2008 at 12:18 AM Anonymous Says:

Reply to #191  
Last Words from Dor Yeshorim Board member Says:

Sorry to disappoint the skeptics, cynics and uneducated. Rabbi Ekstein is a wonderful individual and has built an organization that is responsible for saving many Jewish families the agony of having children with fatal recessive genetic diseases. But he does have an active Board.

Because you don't understand something, you might consider that the fault lies with you - you might be misinformed, don't understand all the complexities of the issue, or didn't spend enough time trying to really understand why an organization is so set in doing their work a certain way.

The Jewish Week and yes, even Dr. Ditchek, do not have over 25 years of genetic experience. Because the writer of the article spent several hours interviewing, surfing the web... etc. does not make him an expert in the field. Exactly the opposite is true, it shows his complete ignorance of the facts and the true motive of his article. And while Dr Ditchek may be a wonderful person, he might not have been correctly quoted or is misinformed about DY's methods or procedures. What ever method he could have used to bring about a discussion regarding Gaucher testing, talking to a Jewish Week writer, who seams eager to spread innuendoes regarding DY and its founder is surely not the way.

Dr. ditchek has been treating children with jewi genertic disease for many years. he is widely known in the circles in the medical community that cater to these diseaes. you probably arent even a doctor and if you have a grad degree of any kind its probably some MBA from devry.

211

 Dec 24, 2008 at 11:56 PM Anonymous Says:

#198, ignorant? if the parents test negative as carriers then the children cannot be carriers, then the future chasan /kallah even if! they were carriers can marry. you need both! people to test pos. as carriers not to be able to marry, not just one.

212

 Dec 25, 2008 at 01:17 AM analyist Says:

with respect to mr. ecksteins organazation, we all agree that this org. is a blessing for the community and a tremendus zechus for him of preventing so much agony in many ways, yet the questin of being able to do more and withelding it and not doing so is still a very real questin not yet answered,

as you can see on vin comments which had many of dor yashurims insiders that there is no logical answer to that, this is to me reel proof of what dr. claim is true and right, it speeks for itself that thay are stuck by there thinking of this is a for marital purposes only, but why not ??? if you have another appilcation of preventing and your purpose is to help and prevent problems why not go a step further and help in any shape or form posible, ??? chazal says ( kol hamkayim nefesh aches m'yisroel k'eili m'kayeim olem moleh) ??? and the same is true on the opposite.???

213

 Dec 25, 2008 at 12:54 AM Anonymous Says:

Reply to #211  
Anonymous Says:

#198, ignorant? if the parents test negative as carriers then the children cannot be carriers, then the future chasan /kallah even if! they were carriers can marry. you need both! people to test pos. as carriers not to be able to marry, not just one.

they can still marry if the want to

214

 Dec 25, 2008 at 09:22 AM DY Board Member Says:

Most of your comments are not thought out and show that you have little or no understanding of the DY system, what it actually does, how it functions, and the broad support it has in the medical community.

I have never before bothered with responding to blogs and your continuous thoughtlessness is proof that I should not have responded now.

I'll give you an offer. If you give me any of your phone numbers I will call you and discuss the entire issue with you. As I said before these are not issues to be dealt with in an open forum. If you have the guts to take a risk and give me a way to contact you individually with your questions I will respond. Otherwise this is an exercise in futility - people talking about a subject that they are really clueless about.

215

 Dec 25, 2008 at 10:00 AM Anonymous Says:

Reply to #206  
Reader Says:

Why are people blaming the Jewish Week?
BTW Ever wonder how much a role this craziness plays in the "shidduch crisis" ???

As a sibling of someone who DIED of Gauchers Disease, it wasn't easy to find a Shidduch.l I don't allow my children to go out without Dor Yeshorim. My personal policy is that if the Shadchan can't give me the Dor Yeshorim numbers, it ain't gonna happen.

Rav Simon Schwab Z"tl oncew answered someone who didn't want to do Dor Yesharim with the excuse of "Shomer Pesoyim Hashem (G-d watches over fools" - right before he was going to propose. He immediate response was, "don't be a Chossid Shoteh!, get tested first".

I remember the Bluzhever Rebbe Z"tl yelling at a relative, "how can I take a Kvittel for a Shidduch if you haven't done the Dor Yeshorim testing. You haven't done your Hishtadlus."

To all of you who have said anything about Rav Eckstein. Don't comment until you've buried one of your own children & then followed Daas Torah every step of the way on a living memorial for your dead child(ren).

216

 Dec 25, 2008 at 10:57 AM Anonymous Says:

Reply to #179  
glatekup Says:

Yes a shaila must be asked but generally if you look in the "igros moshe" reb moshe is very against abortion for tay-sachs. He is not mechalek if it is within 40 days or three months or even further. The tzitz eliezer allows abortions forsure at the biginning stages and in some cases even later. Most poskim in america tend to follow the shita of the tzitz eliezer because he is maikel. One of the big poskim who follows this is reb dovid cohen. In eretz yisroel most poskim follow the more stringent rule and do not allow it. But of course everyone must follow his posek if a question comes up.

Wow! Someone who knows what they are talking about!

Kiddush, kiddush!

217

 Dec 25, 2008 at 11:29 AM Anonymous Says:

Reply to #193  
Anonymous Says:

If you have Oxford Health Insurance and your doctor prescribes the same genetic tests that DY offers, you and your spouse can be tested for FREE and save your children the pain and time, and you can save much money. You will have your results for yourself. If you both test negative as carriers then your children do not have to do DY as they! are not carriers!

Where is Yiras Shamayim/Emunas Chachomim? The Zekenim and Gedolim on whose wisdom Dor Yeshorim was founded created a system that purposely does not allow for individual results and that purposely avoids insurance companies knowing personal information. This prevents stigma and trauma. Who knows what the future holds? There may come a day when there will be discrimination against individuals with certain genes! Thank G-d for Dor Yeshorim!

218

 Dec 25, 2008 at 12:00 PM Yud Says:

Reply to #215  
Anonymous Says:

As a sibling of someone who DIED of Gauchers Disease, it wasn't easy to find a Shidduch.l I don't allow my children to go out without Dor Yeshorim. My personal policy is that if the Shadchan can't give me the Dor Yeshorim numbers, it ain't gonna happen.

Rav Simon Schwab Z"tl oncew answered someone who didn't want to do Dor Yesharim with the excuse of "Shomer Pesoyim Hashem (G-d watches over fools" - right before he was going to propose. He immediate response was, "don't be a Chossid Shoteh!, get tested first".

I remember the Bluzhever Rebbe Z"tl yelling at a relative, "how can I take a Kvittel for a Shidduch if you haven't done the Dor Yeshorim testing. You haven't done your Hishtadlus."

To all of you who have said anything about Rav Eckstein. Don't comment until you've buried one of your own children & then followed Daas Torah every step of the way on a living memorial for your dead child(ren).

i know several families who have suffered tragic losses but would never trade the lives lost with them having never lived at all.

219

 Dec 25, 2008 at 02:52 PM Anonymous Says:

Reply to #218  
Yud Says:

i know several families who have suffered tragic losses but would never trade the lives lost with them having never lived at all.

I am aware of families who think along your line - my parents among them, but once there is a Psak Halacha then that is what a Jew follows.

220

 Dec 25, 2008 at 05:09 PM Anonymous, M.D. Says:

""Dor yesharim" was created with the idea of anonymity. Anyone who does not like it should go to a private lab."

I don't get it. If they want to be unnecessarily overcautious, let them put in an extra box which people can check if they want to know if they have a disease. How hard is that?

Personally, I can understand very well why someone in the OJ community wouldn't want to know he is a carrier. But I feel strongly that the vast majority of people, if they understood that they can be treated for a potentially debilitating disease while still having disease free children, would choose to find out.

221

 Dec 25, 2008 at 05:25 PM Anonymous, M.D. Says:

"The Jewish Week, and, all the so-called medical experts, are missing the boat. Dor Yeshorim's (DY) policy is to to test for Gaucher's "by request only". That is because the majority of the individuals who have Gaucher's have a very mild form of the disease. Not a reason to consider a prospective match to be incompatible and stop a possible match from coming to fruition."

Okay. I don't personally agree with that, but I understand where you're coming from. That being said, you're the one missing the boat. The complaint is that you're not telling people WHO ACTUALLY HAVE THE DISEASE. The complaint has nothing to do with whether you should stop a shidduch for this.

"When DY is informed that a particular match is requesting the additional Gaucher's testing that is proof that there is Gaucher's in the family and that the family has received medical advice regarding the disease. Otherwise the individual would not be requesting testing for Gaucher's."

Ummm, no. The vast majority of people with the Gaucher's allele don't have the disease in their family. Despite having no Gaucher's in my family, I would want to know if I were a carrier. And I would certainly want to know if I actually had the disease. Frankly, I hope that decisions made at DY are made with more clear thinking.

222

 Dec 25, 2008 at 05:38 PM Anonymous, M.D. Says:

"This public policy issue is for the Gedolei HaPoskim to decide. What this or that pediatrician thinks or says--no matter how qualified that general pediatrician might be--is halachically meaningless. The Gedolim have to decide whether the risks of scaring off people from being tested and / or preventing possible shidduchim outweighs the benefit of preventing marriages between two carriers."

What "the gedolim say" is also halachically meaningless, as this is not a halachic issue. It is one of shikul hadas. In an ideal world, the gedolim might have the best shikul but there is ample evidence that this is not always the case, and certainly not in areas about which they have little knowledge.

223

 Dec 25, 2008 at 05:49 PM Anonymous, M.D. Says:

"Sorry to disappoint the skeptics, cynics and uneducated. Rabbi Ekstein is a wonderful individual and has built an organization that is responsible for saving many Jewish families the agony of having children with fatal recessive genetic diseases. But he does have an active Board."

And since I've left a couple critical comments, allow me to a moment to add that Rabbi Ekstein and the organization/board have done a tremendous job and saved numerous people from lives of suffering and death. I might disagree on one point but no doubt the organization has done much more for people than have I.

224

 Dec 25, 2008 at 08:15 PM Anonymous, M.D. Says:

"Sorry to disappoint the skeptics, cynics and uneducated. Rabbi Ekstein is a wonderful individual and has built an organization that is responsible for saving many Jewish families the agony of having children with fatal recessive genetic diseases. But he does have an active Board."

And since I've left a couple critical comments, allow me to a moment to add that Rabbi Ekstein and the organization/board have done a tremendous job and saved numerous people from lives of suffering and death. I might disagree on one point but no doubt the organization has done much more for people than have I.

225

 Dec 25, 2008 at 07:44 PM Yud Says:

Reply to #219  
Anonymous Says:

I am aware of families who think along your line - my parents among them, but once there is a Psak Halacha then that is what a Jew follows.

what psak is that?

226

 Dec 25, 2008 at 07:41 PM TRUE FACTS FROM AN EFFECTED PERSON Says:

please note there are a few levels of gaucher carrier and effected even if someone is affected it depends on what mutation example is if they have 1226 they can live until 96 (the oldest recorded person) and not know it! if the client won't know about it why inform him?

227

 Dec 25, 2008 at 11:31 PM rivkye Says:

Reply to #19  
Anonymous Says:

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.

The purpose of Dor Yesharim is that the person not know that they are a carrier of any disease. They will never disclose that information because if a person knows, then they hve to disclose it to a prospective match and it may be considered a flaw. (It definitely was before Dor Yesharim publicized that it takes 2 carriers to have a 1 in 4 chance of having a child with that disease)

228

 Dec 25, 2008 at 11:23 PM rivkye Says:

Reply to #5  
glatekup Says:

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.

Dor Yesharim does not allow you to test at an independant lab. And if they find out that you did, they will not give you results on if it is safe to marry a prospective match.

229

 Dec 27, 2008 at 07:05 PM annonyms Says:

shame on you who can try to distro a org. proven for years &helping 100000 you don't like it open a company doing this test & help &dont cretzise others who's proven & we are very thankfull for rabbi ekstein should god blase him & family whit every thing good for ever

230

 Dec 27, 2008 at 08:47 PM Anonymous Says:

to # 203 it is gizayla as it says in the form by signing below i agree that i was NEVER tested and DO NOT KNOW my results.. if you were tested and you signed isnt that genava(ginayvas das) why say if they got paid that is enough?
a haapy channuka

231

 Dec 28, 2008 at 11:06 PM Anonymous Says:

Reply to #136  
Anonymous Says:

I find it quite simple why Jewish week is attacking this great tzadik, cuz since the readers and the children of the Jewish week readers marry Goyim they dont have to worry about the Jewish genetic diseases!!!!!!!!!

very well put.

232

 Dec 30, 2008 at 01:26 AM Anonymous, M.D. Says:

"Sorry to disappoint the skeptics, cynics and uneducated. Rabbi Ekstein is a wonderful individual and has built an organization that is responsible for saving many Jewish families the agony of having children with fatal recessive genetic diseases. But he does have an active Board."

And since I've left a couple critical comments, allow me to a moment to add that Rabbi Ekstein and the organization/board have done a tremendous job and saved numerous people from lives of suffering and death. I might disagree on one point but no doubt the organization has done much more for people than have I.

233

 Dec 30, 2008 at 11:49 AM Anonymous Says:

Reply to #228  
rivkye Says:

Dor Yesharim does not allow you to test at an independant lab. And if they find out that you did, they will not give you results on if it is safe to marry a prospective match.

that is the most idiotic thing ever heard.

In any event, if all the kids went home from school and asked their parents first if they are carriers and they say they know they arent, then guess what? the kids dont have to take the test. does DY inform that of this before making them all come back for their right of passage test?

234

 Jan 02, 2009 at 11:22 AM Anonymous Says:

Reply to #232  
Anonymous, M.D. Says:

"Sorry to disappoint the skeptics, cynics and uneducated. Rabbi Ekstein is a wonderful individual and has built an organization that is responsible for saving many Jewish families the agony of having children with fatal recessive genetic diseases. But he does have an active Board."

And since I've left a couple critical comments, allow me to a moment to add that Rabbi Ekstein and the organization/board have done a tremendous job and saved numerous people from lives of suffering and death. I might disagree on one point but no doubt the organization has done much more for people than have I.

why is it that everytime someone has a legitimate tayneh or questrion of someone in a heimishe org the best and most used line of defense is "but he is such a wonderful person" ???

235

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