Tuesday, February 22, 2005

On a need-to-know basis

Last month, it was reported that thanks in a large part to genetic screening (and some abortions), there were no Jewish babies born with the horrific Tay Sachs disease last year. The Jerusalem Report magazine has followed this up with a lukewarm report about Dor Yesharim, the organization that handles most of the screening in the Orthodox communities in Israel and in the US. The organization does not disclose results to those who have been tested unless both partners screen positive, in order to prevent a 'stigma' attaching to those who carry the gene; opponents say this merely reinforces the stigma and cultivates an unhealthy climate where people are unneccesarily, and out of ignorance, afraid of people with 'bad genes.'
It's all done, say the detractors, because Dor Yeshorim wants to maintain a powerful and lucrative mono-poly on genetic screening among Orthodox Jews...
The policy of withholding medical knowledge, [British ultra-Orthodox Rabbi J.J. Rosner] says, is not only "unethical, an infringement of civil rights and liberties and an insult to any person's intelligence," it's also a shrewd marketing tool. "By telling no one their test results, Dor Yeshorim is forcing everyone to be tested. Think about it. If I am tested elsewhere and know I'm not a carrier, then the person I want to date need not be tested." Rosner also says matchmakers are in the loop, implying that they get gratuities from Dor Yeshorim, and frequently tell shiddukh-seekers that they must take a Dor Yeshorim test as a condition for finalizing the match. And, he charges, because Dor Yeshorim throws so much business at laboratories that conduct its blood tests, it is able to force those labs not to handle samples from rival screening institutions.
Rabbi Rosner is "founder of the London-based Association for the Prevention of Jewish Genetic Diseases, which, he says, conducted its own nonprofit Tay-Sachs screening operation in Britain long before Dor Yeshorim came on the scene" -- and which does give recipients their results. Hmmm. However, he was not the only critic:
One correspondent [to the London Jewish Tribune, which apparently has 'covered the controversy' - MS], Y. Kornbluh, complained about being pressured to subject is adult child to screen with Dor Yeshorim as a condition to complete a New York-based shiddukh - even though he and his wife came armed with medical certificates from a bona fide London clinic that neither of them were carriers and so their children could not be....
Rabbi J. David Bleich of New York is also a critic... "It's expensive - why should every kid in a family of 10 have to be screened? Isn't it cheaper to screen the parents? Second, it cultivates a deliberate know-nothingness in the Orthodox world that is intolerable."
Now, I have no first-hand experience of Dor Yesharim and until I read this article had only ever heard good things about them; indeed, I believe, as do many, that they deserve enormous credit for making people aware in the Orthodox world that genetic screening is important and for preventing an untold number of tragedies. Certainly, I have no doubt the organization was founded with the best possible intentions.
Nevertheless, three accusations here disturb me: the stigma issue, which is probably unintentionally made worse in the long term, not better, by treating having the gene as something which must be kept secret; the cost issue; and the 'right to know issue.' Perhaps some people don't care about the latter; I can only say that when I was tested (not through Dor Yesharim), I did, because I wanted to know, and felt it was my right to know, whether there was a chance the gene could be passed down to our children (if one parent has the gene there is a 50% chance of passing it on, though the children can't inherit the disease itself).
On the other hand I do wonder if the problem of Shadchanim insisting on Dor Yesharim testing exclusively has as much to do with issues of conformity in the Orthodox community, which have been discussed on this blog many times before, as with anything else.
Any thoughts on all of this, particularly from people who have experience with Dor Yesharim?


Anonymous said...

I understand that if you cross Dor Sheino Yeshorim, you could get blacklisted with shadchanim. What we need is to find which lab they use and hit the lab directly with acourt injunction.

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