A few weeks ago I discussed prenatal testing
for disabilities such as Down syndrome, and considered the implications of being able to eliminate, before they are even born, people who have such conditions. Since then, a test has been developed to identify genetic defects even earlier during a pregnancy, when expectant parents have more time to consider their options--and when abortions are safer to perform.
Given that many parents will decide to terminate a pregnancy if they learn their child will have Down Syndrome or the other problems that can be discovered through prenatal testing, then earlier testing is a good thing. But it only sharpens the moral dilemma: Is it right to abort a pregnancy merely to spare a child--and ourselves--a life that we do not believe is worth living? And if you think it is, how do you explain it to those who already are living with these disabilities? Are you prepared to tell them it would have been better had they never been born?
An article in today's New York Times
tackles these very questions, and raises the possibility of a future that we have seen in science fiction, in films and literature, from "Brave New World"
to "Gattica": Some bioethicists envision a dystopia where parents who choose to forgo genetic testing are shunned, or their children are denied insurance. Parents and people with disabilities fear they may simply be more lonely. And less money may be devoted to cures and education.
Is this likely? It's tempting to say no. But consider, as this article does, that $15 million was spent to develop the new test for Down syndrome. That father of one child with Down syndrome asks what else could have been done with that money:Indeed, the $15 million spent on the new test for Down by the National Institute of Child Health and Human Development might have gone instead toward much-needed research on the biochemistry of people living with the condition, said Michael Bérubé, co-director of the disabilities studies program at Pennsylvania State University.Mr. Bérubé, whose 14-year-old son has Down syndrome, worries that if fewer children are born with the condition, hard-won advances like including them in mainstream schools may lose support. "The more people who think the condition is grounds for termination of a pregnancy, the more likely it will be that you'll wind up with a society that doesn't welcome those people once they're here," he said. "It turns into a vicious cycle."
Which brings me to "Gattaca." It's about a future in which children are genetically engineered to perfection, and in which those who are born naturally or who otherwise develop disabilities are relegated to second-class status. The main character, Vincent, disguises his disabilities, which include a congenital heart defect and myopia. In one memorable scene, after Vincent had to discard his contact lenses, he must cross a busy road, and the movie does a decent job of conveying what it is like to be severely near-sighted. (Believe me, I know.)
When I first saw the film, I was facing what could have turned out to be a serious medical problem, and this movie seemed to ease my fears. Vincent falls in love with a woman named Irene, who is all too quick to believe what society has told her about her own "handicap", a heart defect. As Vincent tells her,"You are the authority on what is not possible, aren't you Irene? They've got you looking for any flaw, that after a while that's all you see. For what it's worth, I'm here to tell you that it is possible. It is possible."
As humans, we are defined by our limitations, and our ability to overcome them. The irony of Vincent's words, however, is that what is possible is not always what's desirable.