3. Eugenics and negative germ line therapy:

An example of negative germ line therapy would be removing from the human gene pool those genes that we consider to be deleterious. One example--and I'll have you discuss this in more detail later on this morning--has to do with a voluntary screening program (and this is a screening program, not a testing program) in the Ashkanazi Jewish community where there is a high prevalence of Tay-Sach's Disease, which is a terrible, terrible disorder. Members of the Ashkanazi Jewish community are being encouraged, voluntarily, to test, to be tested for Tay-Sach's and other diseases now--there are four of them --whenever they contemplate dating somebody, to find out whether both the man and the woman are heterozygous carriers. And if so, to avoid pursuing their relationship any further and certainly to avoid having children. Because this will, it is hoped, eliminate Tay-Sach's from the gene pool in the Ashkanazi Jewish community.

So that's one form of negative eugenics and it raises interesting questions. The first question that comes to mind is, what is a disease? How do you define a disease, because we're all different from each other genetically? What is normal? None of us is normal, whatever normal is. We're all different. We are all strong and weak in different ways, so who's to define normality, who's to define deviance from normality in terms of disease and what is a disease? Generally speaking, I think a consensus is emerging that we want to reserve, if we get into it at all, we want to reserve germ line therapy only for very serious maladies. That is to say, conditions that are usually fatal and cause indescribable pain and suffering. Those are tragic conditions. It may be appropriate to try to rid the human gene pool of these.

But even that is fraught with ambiguity. I mean, for example, think of the agonizing that went on after the World Health Organization announced that it had eliminated small pox, or at least small pox in its wild form, worldwide and the agonizing about whether or not to destroy the remaining strains of small pox bacteria that are in storage. I don't remember what the upshot of that is or was, whether we did in fact destroy all remaining strains. Did we? We haven't, I don't think we have. But the reason for holding off on eliminating it all together is, gosh, you know, there may be some hidden benefit to this thing that we don't even know about yet and in 50 years time may wish we had not acted so precipitously to eradicate it completely. Because many of these so-called genetic diseases may mask or hide or conceal some kind of evolutionary benefit for the species. Who knows? So, that's one question. What is the disease? Positive eugenics goes beyond removing deleterious genes from the gene pool.


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