Would you cripple your child?

Would you choose to give a child a disability? The question seems preposterous, but as Slate pointed out, a recent academic paper reports that parents at three percent of U.S. fertility clinics did just that.

Are you planning on having a child? Worried about your family's history of cystic fibrosis, or hoping to protect the next generation from Tay-Sachs or spina bifuda? It is now possible to do genetic testing for a number of diseases well before birth. Genetic screening of embryos at fertility clinics is becoming popular – since the clinics create a number of embryos and only implant one, it is relatively easy to test and select the healthiest of the lot.

But as Slate bluntly points out, not all parents are looking to prevent their children from suffering a debilitating disease. Many parents simply want to balance their families, adding a girl if they already have boys. But in a more shocking twist, deaf parents are asking to have deaf children, and the blind may be purposefully giving birth to the blind.

My immediate reaction is that this just seems wrong. How is imposing a lifelong limitation on someone else, even your own child, before birth any different from imposing it afterward? Surely it's illegal and immoral for a deaf dad to jam an ice pick in his son's cochlea.

But the more I've thought about it, the more I wonder about why the parents are making these requests. Are they just really, really committed to the notion that there is a deaf culture? That doesn't seem likely.

I can think of two lines of thought that might lead down this path. One is that two deaf parents might worry that they would not be able to properly assist in the speech development of a hearing child. Many deaf people can speak well without being able to hear themselves, but it might be more difficult to teach a child. I don't have any case studies or evidence on this point, but it's a possibility.

For the second line of thought, I try to put myself in their shoes, at least through analogy. I always did well at math in school, but I'm no genius. There are otherwise normal human beings all over the world who are geniuses – people who have a deep, intuitive understanding of math, or music, or chess that I will never have. If tomorrow scientists isolated the math-genius gene, and a clinic offered me the chance to chose the math-genius positive embryo, would I? In this case, my wife and would be the “disabled� ones, lacking this sublime understanding of math-if we chose instead to have a “normal� child, would we be doing the same thing these deaf parents are?

It is not a perfect analogy (as my wife pointed out when I posed the question to her). For one thing, being a math genius is not the usual baseline case, and in that way it is similar to blindness or deafness. But is this majority rule enough to make a moral judgment?

I'm not going to go down the slippery slope of employing a “slippery slope� argument, but it is interesting to consider the gray areas – for example, some diseases shorten lifespan and induce so much suffering that nearly everyone will agree it is good that they can be avoided. But what about genes that only statistically increase the risk of a disease? Is it good to avoid a gene that increases breast cancer risk by 80%, but a bad idea to screen for a gene that represents a 7% increase in heart disease?

I'm usually a staunch supporter of the “crippling children is wrong� camp, but the more I think about this the more I wonder – where will we draw the lines, and how will we make these moral decisions, as the technology improves and becomes less expensive and more common place?

Post a Comment

(or leave a trackback to your blog)