Moral Myopia and Journalistic Integrity
As we follow the current “conflict” in the Gaza Strip, it’s easy to discern who cares about the facts, who displays a genuine understanding for the realities of the situation, and who is only interested as casting the Jews and Israel as the evil aggressors. When we look at media reporting about the Orthodox community, it is similarly easy to discern who is attempting to present a balanced picture, and who is primarily interested in finding yet another opportunity to say something bad about frum Jews.
Exhibit A: The NY Jewish Week’s “Group Charged With ‘Playing G-d’ Over Genetic Testing,” Gary Rosenblatt’s one-sided slur of Dor Yeshorim, the Committee for Prevention of Genetic Diseases, a charitable organization which has done simply amazing things in behalf of the Jewish community. The facts are wrong, the science is lousy, the judgment unrealistic and poor, and the bias, self-evident and inexcusable.
Dor Yeshorim, says Rosenblatt, is no stranger to “controversy.” A more accurate statement would be that Dor Yeshorim is no stranger to bad reporting. Back in 1994, the US News & World Report accused Dor Yeshorim of practicing “eugenics,” which is both an incendiary charge in the wake of the Nazi Holocaust, and also stands truth on its head. The net effect of the Dor Yeshorim screening program is to increase the population of carriers of fatal genetic defects, by enabling carriers to marry and reproduce without giving birth to afflicted children. Time after time, reporters have demonstrated their lack of knowledge regarding how Dor Yeshorim screening works, how the stigma of being identified as a carrier is avoided, and why it is necessary.
Put briefly, there is a disconnect between what we know intellectually, and our fears. According to a geneticist MD friend of mine, it is well-established in the research community that the average person is carrying around seven “recessive lethals,” the vast majority of which result in an (often undetected) miscarriage. We are all “carriers,” and carriers of Tay-Sachs, Cystic Fibrosis or Familial Dysautonomia are no less healthy than anyone carrying any of the myriad other recessive abnormalities. But try telling that to a high school kid who’s just been told to avoid marriage with another carrier — or try explaining it to the nervous mother of a prospective spouse. And before reaching the conclusion that this is because the “insular” Orthodox are “ignorant” of human genetics, note that the U.S. Air Force dismissed 143 healthy African-American applicants because they were carriers of the Sickle-cell gene — a practice it abandoned only after being sued.
This is the brilliance of Dor Yeshorim. As Rosenblatt quotes from the literature, its goal is “to provide protection from predominantly Jewish genetic diseases, while safeguarding individuals from the psychological stigma of carrier status knowledge.” No one needs psychological counseling, pre-marital counseling, or lessons in genetics — just a blood test.
Only when both partners are carriers of the same defect are they discouraged from pursuing their relationship. They need very limited counseling even in that case, because Dor Yeshorim’s silence as to why they are incompatible is all the evidence they need that their own health is not at risk. As far as the rest of the world knows, the shidduch (match) didn’t work, no reason given — as is the norm. Failure to tell young men and women that they are carriers might smack of “paternalism,” but it displays an acute awareness of human psychology coupled with a generous dose of compassion.
The proof is in the pudding, as they say. Dor Yeshorim has been around for twenty-five years. Participation is voluntary, and everyone is clearly informed that they will not be given results. The success of Dor Yeshorim rests entirely upon the fact that it does not disclose anything, beyond the private response to a prospective couple that they both tested positive for the same defect.
Nonetheless, participation in the charedi community is upwards of 98% — and Tay-Sachs has been nearly eliminated from the community. Say what you will; this is a formula that, besides being arrived at through careful consultation with both leading medical experts and leading Torah scholars, obviously works.
Given what has passed for reporting in the past, it should surprise no one that Rabbi Joseph Eckstein, Dor Yeshorim’s founder and director, asks to review any article after he is interviewed. His assistant clarified to me that Rabbi Eckstein only wants to vet the facts, not whether the reporting is favorable or not. As Rabbi Eckstein told me today, “journalists don’t understand the issues, and they write things that are incorrect. So I’m doing it for the good of the journalist also. The moment that he is unhappy with this, I know that he’s not interested in getting the truth, but in sensationalism.” Perhaps this explains why the BBC (and this writer) happily complied, while Rosenblatt treated Rabbi Eckstein as if his request was ludicrous.
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.
Rosenblatt then proceeded to justify Rabbi Eckstein’s concerns. In a scathing letter, Dr. Robert Burk, Vice Chair of the Department of Pediatrics, Division of Medical Genetics, and Professor of Pediatrics, Epidemiology & Population Health, OB/Gyn and Women’s Health, and Microbiology & Immunology at the Albert Einstein College of Medicine, shreds Rosenblatt for a litany of offenses:
- Presenting a biased representation of Rabbi Eckstein, Dor Yeshorim, medical facts and community sensitivites;
- Overlooking potential financial conflicts of interest that could color doctors’ judgment;
- Personally attacking Rabbi Eckstein; and
- Relying upon a “national medical expert” with no expertise in the relevant area.
While I certainly cannot presume to discuss the research into the incidence and treatment of Gaucher’s disease, which Dr. Burk documents extensively in his letter, the credentials and motivations of Rosenblatt’s “medical experts” need to be examined in further detail. Dor Yeshorim has a board of medical professionals, including respected and well-published geneticists, who are consulted in every aspect of the program. Who are these “critics” feted by the Jewish Week for their “charges” against Dor Yeshorim?
Undoubtedly, they are all sincere, credentialed, and as physicians truly believe that their opinion is correct. But as the Torah warns us, “bribery” of any kind (not just the blatant, Blagojevich-style kind) can distort the judgment of tzaddikim, truly righteous individuals.
Dr. Burk alludes to a potential conflict of interest when drug companies get involved. Of the three experts quoted in the NYJW, one sits on the Medical Board of a Gaucher’s organization which receives “particularly generous” funding from Genzyme, the company which produces “long-term enzyme replacement therapy” for Gaucher’s sufferers. A second writes for a newsletter (produced by that same organization) which is sponsored by and actively promotes Genzyme’s Cerezyme product.
With regards to the third, the “National Medical Expert” leading the charge against Dor Yeshorim, Dr. Burk merely points out that he “does not have a single peer reviewed publication on Gaucher disease that could be found in the medical literature,” the standard of expertise in the world of research. The doctor in question is a well-known pediatrician with an active practice in Brooklyn, and a Clinical Assistant Professor at Tisch Hospital of the New York University School of Medicine, Department of Pediatrics. A clinical professor is one who primarily practices medicine rather than medical research, which is, in this instance, as significant as the fact that he is an assistant professor, meaning less experienced and untenured.
He is also the Medical Director of an extremely well-known Orthodox support program for seriously ill children. Again, he is obviously sincere and well-meaning. But his website, his articles, his book, and his products hardly crown him as a “national medical expert” on Gaucher’s or genetic disease research.
He is also, as the article points out, the “director of the Jewish Genetic Diseases Consortium, a nonprofit organization founded two years ago to increase education and awareness, and encourage genetic testing.” This is a clue. Once again we must question not merely expertise (or lack thereof), but motivations. The Jewish Genetic Diseases Consortium is an organization aimed at “encouraging and facilitating genetic testing for carrier status which can ultimately prevent (or greatly reduce) the birth of affected children.” In other words, it ostensibly has the exact same goal as Dor Yeshorim. But whereas Dor Yeshorim is a household name in the Orthodox community, and widely credited for the near-total disappearance of Tay-Sachs among charedi Jews, the Jewish Genetic Diseases Consortium is relatively unknown.
Enter the NY Jewish Week. The JGDC gets the front page, and Rosenblatt gets another opportunity to make the Orthodox look bad. Truly a match made in … well, not Heaven.
What is the JGDC? It encourages testing and counseling to married couples “which may be helpful in making family planning decisions.” In other words, offer couples the information necessary for them to perhaps decide to kill the baby now rather than watch him or her die later. Dor Yeshorim, on the other hand, screens men and women before marriage, and suggests that they not get married at all if one in four of their progeny will suffer from a fatal defect.
The JGDC will, of course, encourage screening before marriage as well, and “if a person is found to be a carrier, a genetic counselor can explain the implications of this finding.” Dor Yeshorim, on the other hand, offers double-blind screening, avoiding the need for counseling as described earlier.
Instead of taking pot shots, the director of the JGDC might be better off taking lessons. Or at least, if we recognize that the Dor Yeshorim screening process is most effective in a community where careful screening of marital partners and “organized dating” for the purpose of marriage is routine, there should be recognition of its success and respect, rather than disdain, for its innovative methodology. Both organizations have their purpose and their place.
According to the NYJW, the doctor “charges that Rabbi Eckstein has acknowledged that he has not informed people who have tested positive for Gaucher’s that they have the disease.” According to Rabbi Eckstein, this is distorting the truth. When Dor Yeshorim tested for Gaucher’s, it did inform people who genetically had the disease. Today Dor Yeshorim no longer feels it appropriate to discourage a pair of Gaucher’s carriers from marrying since, as Dr. Burk points out, “it has been estimated that nearly two-thirds of persons with a Gaucher disease genotype have few or very mild manifestations of the disease,” and more severe manifestations can now be effectively treated. This applies even to those tested previously — Dor Yeshorim’s automated system no longer takes Gaucher’s into account.
Rabbi Eckstein remains fluent in the symptoms of Gaucher’s, and numerous sufferers have commended him for referrals to medical professionals and treatment programs. Yes, there is a judgment call in the fact that Dor Yeshorim does not alert two Gaucher’s carriers that they are likely to produce genetically symptomatic offspring. But to do otherwise would fly in the face of both Dor Yeshorim’s mandate, as well as the medical research counseling against screening for Gaucher’s. The Israeli Medical Geneticists’ Association has recommended against Gaucher disease screening, due to the likelihood that a person will be entirely asymptomatic — and that revealing the genetic abnormality could lead to needless worry and expense.
Providing this information to a dating couple would discourage them from pursuing a relationship, regardless of the likelihood that all their children would be completely asymptomatic — and completely violate the mandate under which young men and women approach Dor Yeshorim.
It is not as if Dor Yeshorim is not newsworthy. This is, again, the organization that nearly eliminated Tay-Sachs from the Orthodox community. But instead of a feature article celebrating this incredible accomplishment, the NY Jewish Week relegates it to a single clause:
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.
Dor Yeshorim tests for conditions where carriers need no treatment — the only thing they need to do is avoid marriage with another carrier of that same genetic abnormality. The so-called “critics” would impose a needless psychological burden upon countless young men and women, providing plenty of business for psychiatrists and counselors while benefiting no one. In what real-world sense that could possibly be called “morally” superior entirely escapes me.
The end result? Another attack by Gary Rosenblatt upon Torah-observant Jews doing the right thing.
I don’t have hard numbers, but it seems to me that anti-semitic articles on the Internet and elsewhere are on the rise. A steep rise. Has anyone else noticed this, or is it my overactive imagination?
Take a look at the front page of Reddit or Digg, for example. It’s very discouraging. I feel as though Jews are sinking fast (again) in world opinion, especially among “enlightened” and educated people and this has me very concerned.
Dr. Burk is a world-renowned genetics researcher. He is also an Orthodox Jew and the gabbai for the 2pm minchah minyan at the Albert Einstein College of Medicine that meets for prayer Monday through Thursday. (Please join us if you are ever in the vicinity!) He is also a total mentch.
When a news outlet chooses to address a subject primarily for the sake of sensationalism or ax-grinding, it is incumbent upon us all to spotlight the biases & inaccuracies. Jewish Week regularly slants their presentation of “facts” to disparage the Ortho/Chareidi community. Clearly no reasonable reporting was done regarding Dor Yeshorim, which is unfortunate on multiple levels.
However, has there been – and might there still be – some measure of discomfort about the mission & current standing of Dor Yeshorim? I believe the answer is yes. At its inception there were Gedolai Yisroel who were not in favor of universal genetic testing, even for the lofty purposes of Dor Yeshorim. And in its current status it is absolutely correct to state that NO shidduch in the frum world would be pursued if an individual refused to submit to a Dor Yeshorim blood test. What started out as a voluntary practice is now mandatory. This alone should give some pause as to the direction we are going.
Yakov Menken writes “They need very limited counseling even in that case,because Dor Yeshorim’s silence as to why they are incompatible is all the evidence they need that their own health is not at risk”. Do you have data to support this assertion? Firstly, it is common practice to request a match assessment from Dor Yeshorim only after a relationship has already begun to develop between the young man & the young woman. If the results are positive & they are told that it would be inadvisable to pursue the shidduch, some significant psychological distress will ensue, especially if their hopes were raised and/or their past shidduch prospects were poor. Secondly, while they are not given to worry about being the carrier of a specific genetic disease they DO know that they are carriers of something. For your average yeshiva bochur or seminary girl lacking in scientific understanding of genetics & statistics, some stigma may very well be felt whether or not their own health is at risk. They are now burdened with information that isn’t easily dismissed when moving on to other shidduchim. Since Dor Yeshorim is not a genetic counseling service, do they know what happens in the cases where a positive match result is reported? To my knowledge they do not become involved beyond the reporting step.
The goal of eradicating the manifestation of Jewish genetic diseases such as Tay-Sachs is enormously compelling – so much so that we can fool ourselves into thinking that we can gain control over our lives in ways which we truly cannot. No course of action is without unforseen consequences. In working pointedly to alter the gentic landscape for the betterment of the community what have we lossed in the process? Are we as compassionate as we ought to be to individuals with birth defects or do we look at those people as “mistakes”? Dor Yeshorim, intentionally or not, has changed the course of Jewish continuity. Is that of concern to anyone else?
People have the right to know their carrier status. If you are adult enough to get married, you are adult enough to know your status.
Furthermore, getting tested through your own private doctor is much cheaper, most insurances cover it. In addition, while you claim this is an attack on Torah Judaism, IIRC, R’ Tendler is against DY and he advocates mass testing at a younger age and let everyone know their status. Everyone is a carrier of something. But something smells fishy with DY and you don’t need to be an anti-Semite to wonder if something is wrong with the way it is set up.
There are 2 issues here. The reporting done by Rosenblatt and the best way to prevent medical horrors. I would like to comment on the 2nd Issue. When I was in 2nd year med school the genetics professor offered for free the Ashkenazi screening and the results where given to us with no counseling. I was given the test results and used it with out DY. (don’t forget it was FREE)
Not everyone has the sophistication to deal with basic genetics, not everyone is as smart or educated as R. Tendler and we need a program that does the most good for the most amount of people. The argument if you’re old enough to get married your old enough to know if your carrier does not work because you do not need to know genetics to be a good spouse and parent. If my children do not go to med school or become proficient in genetics I would not let them do what I did.
My only problem with the system is calling in the Numbers the night before engagement. But that is not a problem with DY, this is a social problem that should be dealt with by Rabonim.
Yitz Turner wrote:
My only problem with the system is calling in the Numbers the night before engagement. But that is not a problem with DY, this is a social problem that should be dealt with by Rabonim.
DY in Israel (I can’t tell you about America) has recently made inroads into the yeshivish end of the national religious population. At the Hesder Yeshiva where I serve in the kollel we have previously received information and a speaker from the Israeli branch of DY. Also my two most recent daughters to get married (and their husbands) have been tested by DY. It is not necessary to get tested immediately before making a decision on an engagement. It is preferable to get tested before starting to go out on shidduchim. Then much of the hassle of developing a relationship and then calling it off is avoided. Don’t anybody freak, but in my youngest daughters’ ulpana (girls’ parallel to DL yeshiva HS) where some girls including some of mine get married before the end of school, they came around to encourage testing of HS girls. I imagine that the “modern” public will continue to keep DY optional rather than mandatory for shidduchim, but it should also be noted that the cost of DY testing in Israel is partially offset by rebates by the Kupot Holim.
There is still the alternative of individual testing plus counseling which is cheaper. People have a choice, but so far I vote for DY.
My wife just told me that the son of a cousin of hers was at Yeshiva University when a representative of DY presented their program and offered the possibility of testing. He opted not to do their testing, which was very costly, because he could get standard testing and counseling from March of Dimes for FREE. If you are educated and not part of a public which is liable to play the “let’s be machmir” game in terms of shidduchim with a person carrying all sorts of genes, then do it. This is a social question.
The first commenter, I believe, unjustly lumps Gary Rosenblatt’s article together with anti-semitic articles. I think the problem is that Rosenblatt is coming from a MO perspective. I remember his father a”h, who was was the orthodox rabbi in Annapolis when I was a student at St. Johns in the late ’60s. I remember Gary as having been the baal shachris on Rosh Hashana when I was there. Let’s hope the reply from Dr. Burk will help to straighten this out. It is possible that the DY approach is not the solution for everybody even in the frum world.
Robert states “while they are not given to worry about being the carrier of a specific genetic disease they DO know that they are carriers of something. For your average yeshiva bochur or seminary girl lacking in scientific understanding of genetics & statistics, some stigma may very well be felt whether or not their own health is at risk.” People, particularly our generation living in the post-genomic era, should get used to the idea that EVERYONE is a carrier of something. This article attributes the assertion of the preponderance of a whopping 7 recessive lethals to an unnamed geneticist, but this scientist will tell you now: all humans are carriers for something, be it by mutations, or the vagaries of polymorphisms and SNPs, but many with the ability to affect health, welfare and longevity. Knowing you are a carrier for something should be as much a stigma as having freckles or red hair, it is just part of the characteristics of your very unique DNA and all the influences it has picked up along the way. This is an interesting and timely topic as the popularity of Dr. David Goldstein’s new book (Jacob’s Legacy) attests- I just got my copy from Amazon delivered today after 2 months of trying. We are only scratching the surface thanks to the new multiplex, high throughput technologies put to use in genetic, genomic and proteomic studies. So get used to the idea that you are most likely a carrier for something just like everyone else around you.
Re Robert Lebovits: If a prospective shidduch did not go through Dor Yesharim, I would want to be sure that s/he did have some testing, the same Dor Yesharim does. If the prospect sounded really, really suitable for my child I might consider doing independent testing, especially since apparantly it would be cheaper through insurance than what we’ve laid out for Dor Yesharim, so wouldn’t break the bank.
And yeah, as has also been mentioned by another poster, I have a real problem with delaying doing Dor Yesharim (or sharing genetic testing results) past the second date. I realize that a bond could already have developed by then, but the emotional havoc should be manageable.
So, RL, are we in agreement that
– young men and women interested in marriage should have genetic testing done before dating, either through Dor Yesharim or the lab of their choice
– and that results should be shared, either the DY way, through the shadchan, or between the two parties very early on in the relationship?
Re Yehoshua Friedman: I believe the reference to calling Dor Yesharim on the eve of an engagement was referring specifically to parties where the testing was likely done in 12th grade, but the parents don’t bother calling DY to check out compatibility till the engagement. Yes, believe it or not, parents will play with their kids’ hearts that way. I personally know some people who have, and luckily had happy endings.
Like it or not, Gary Rosenblatt’s editorial columns and news reportage almost never have amything positive to say about the committed MO and Charedi worlds. Take a look at a recent cover blurb for a book of sermons by R E Rackman. ZL, where Rosenblatt bemoans an Orthodox community that is overly fundamentalist in nature for his taste. The only segments of Orthodoxy that Rosenblatt provides favorable editorial and news coverage for are LW MO and Chabad.
Dr. E. Rubin writes, “EVERYONE is a carrrier of something”. Absolutely true. But how far ought we go to become aware of our personal DNA makeup and what does one do with such information? There are women who have opted for prophylactic bilateral mastectomies upon learning that they carry the marker for increased risk for breast cancer. Insurance companies are eager for the development of a genetic data bank which they could then access to determine who will be insured – and excluded – for what diseases. The possible misuses of genetic identification are staggering. And I’m not even discussing the pitfalls of direct genetic manipulation, such as might be used to alter fetal development, that would be possible with increased data collection.
I firmly believe in the “slippery slope” arguement when it comes to innovation of practices that effect us all. Do we know where we are going when we incorporate the requirement for genetic testing in one of the most fundamental aspects of Jewish life, marriage? What happens when we can test for DNA markers for intellectual functioning? Shall we decide who should be in learning based on their markers? I’m sure this sounds silly; but in the general culture it’s already being done in regard to athletics in high schools. Are we so confident that we will not be tempted to follow suit in our own ways?
Tzippi: I am not convinced in the wisdom of universal testing for shidduchim. I don’t accept the premise that potential health concerns – either of the parties themselves or of their future offspring – should play a dominant role in the shidduch process. Let’s not forget that the marriage of two recessive carriers of a specific genetic condition now makes the manifestation of that condition a possibility, not an inevitability. Of course NO couple should ever have to face the devastation of losing a child due to a genetic illness. But should any and all medical means be pursued to reduce that prospect? Perhaps not, if we have no way of anticipating what the trade-off of genetic manipulation will be.
I know someone who called DY only when already on the verge of getting engaged,and was devastated when she was told that she and the young man were not genetically compatible. Fortunately she subsequently met and married a wonderful young man and they have a few children already — healthy children, Baruch Hashem. But people should be wise and call in the numbers before even meeting a suggested shidduch, and avoid unnecessary heartbreak.
Regarding the comment by Toby Katz — January 4, 2009 @ 2:15 am;
Toby is absolutely right. Unfortunately, a foolish custom has evolved, encouraged by some shadchanim, to have one or more dates before calling DY.
I don’t know how it works in USA. There I hear the debate is whether to contact Dor yesharim after date 1 or 2. In Israel, among chreidi, that is not a problem. Before _any_ date there is extensive background checks carried out. If the results of those checks are not positive, there is no date and no possibility of the “heartache” discussed. It is
easy to add the two DY numbers to the background check.