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.