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In a recent book, Steve Jones describes a very interesting and constructive eugenic procedure, invented by Rabbi Joseph Ekstein, which deserves wide publicity. The Rabbi belongs to a large group of Orthodox Jews, with members in London, New York, Israel and elsewhere, who generally practise arranged marriages. This community has an unfortunately high frequency of heterozygotes for the recessive allele that in homozygotes produces Tay-Sachs disease. There is a test for these trait carriers, but there was considerable resistance to public testing, owing to the irrational but deeply felt fear that a positive result would confer a stigma. Rabbi Ekstein found a splendidly simply solution for this difficulty, and in 1983 he founded a society to implement it: Dor Yeshorim, the Association for an Upright Generation.
Teenagers are tested at school, and each, coded by a number, has his or her result filed in a central bureau, under conditions of strict confidentiality. When a match is being considered, the numbers of the two persons concerned are telephoned to the bureau, where their test results are checked. In the naturally rather rare event that both persons are heterozygous for the Tay-Sachs allele, the arrangers are discreetly advised not to proceed with the match. Evidently in the great majority of cases, nobody need ever be told a test result, even the persons tested. By 1997, tens of thousands of tests had been carried out, and the birth of at least twenty diseased children had been avoided by this admirable procedure, which is beginning to be applied to other genes. The Rabbi rightly feels his method could be used by other communities. There must be millions of people in various cultures who practise arranged marriages: their adoption of this method could do a vast amount of good.
Reference: Steven Jones, In the Blood: God, Genes and Destiny, Flamingo (Harper-Collins), London, 1997, pp 75-7.
Acknowledgement: I am most grateful to Nick, Helen and Alex Humphreys, who gave me this book, which I would otherwise have missed.
W M S Russell