Thursday, December 07, 2006

Something non-political

I figured we could use a change of pace.

Over at unfogged, there was recently a huge long discussion of an essay in the New York Times describing the practice of couples using genetic screening processes to intentionally conceive children with what most people would describe as genetic defects (the specific examples are congenital deafness and dwarfism.) I found it to be an interesting article and discussion, simply because of the way the question set two of my principles against one another.

To be clear about this, I don't think this a terribly widespread practice-the essay says that three percent of 190 fertility clinics had reported doing this. So we could be looking at as few as five children conceived in this way across the entire United States. That said, it's a question that pulls me in different directions.

That the idea of this makes me instinctively recoil is not enough, in my mind, to come down against it. A lot of things from which I instinctively recoil are things I defend, abortion being the most obvious example. So I've tried to make a practice of throwing out the "eww test" as a guide to thinking. That done, what is left to us?

I think I understand the arguments made by the parents who do this-they say, and who am I to dispute this, that their condition has opened up a rich culture to them. And they understandably enough want their children to partake in this culture. This entirely analogous, thus far, to the arguments made by religious or ethnic communities for bringing up their children in ways of which I might not approve. So what's the difference?

Ultimately, I feel it's fairly obvious that the difference is that while you can choose to walk away from a religion or an ethnic or cultural tradition, you can't arbitrarily decide not to be deaf one day. As I say, this seems sufficiently obvious that I'm sort of embarassed, having reached this point in the argument, to have bothered with this post to begin with. But reading through the comment thread over at unfogged, I'm struck with just how contentious this particular point is. And I'm struck, also, just how squeamish I am to call deafness and dwarfism what I quite clearly believe they are in this argument: disabilities. I mean, it seems (and no doubt is, in most contexts) rude to tell someone who says that they're not disabled that they are.

At what point is a decision taken by a parent on their child's behalf something society has a right to interfere with or overrule? The deaf couple quoted in the essay have withheld hearing aids from their mostly deaf son. Christian Scientists, Jehovah's Witnesses and other religious minorities sometimes refuse blood transfusions for ther children. I'm willing to approve of the coercive overruling of the second but not the first because the stakes are different-the hearing may live better lives than the deaf, but people who need blood will die if they don't get a transfusion. This much is clear, but I'm not exactly sure where my personal line is, nor am I clear on what society as a whole would say the line ought to be.

Anyway, I thought it was an interesting question, and while I have answered it in a typically muddle-headed and pragmatic way, I'm interested in whether this makes any sense at all to other people. So have at it, if you like.


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