Critic speak is tough, but we've got you covered.
Quote :"Disability, Democracy, and the New Genetics" in The Disability Studies Reader
For the moment, our society seems to have achieved a shaky but substantial consensus that it is morally acceptable to screen fetuses for profoundly debilitating conditions, such as Tay-Sachs disease, which involves severe and ceaseless suffering over a nasty, brutish, and short life span, but morally unacceptable to terminate a pregnancy solely with regard to gender. Everything else—Down's syndrome, Huntington's disease, multiple sclerosis, leukemia—falls at various points in the capacious area between, and thus far the people of the United States have apparently decided to leave decisions concerning such conditions up to the people who will be most affected by them. But the Gattaca scenario compels us to ask which "potentially prejudicial conditions" we would allow prospective parents to eliminate if the technology were available.
That is to say, even in the not-too-distant-future, we might feel a profound moral repugnance at the idea of terminating a pregnancy simply on the basis of the finding that the fetus has a genetic propensity for obesity, myopia, or premature baldness. But if we could select against these features at fertilization, would we do so, and what moral grounds would we offer for refusing to do so and preventing others, by law, from doing so?
Basically, questions like these are where the social model and the medical model get into a kind of MMA cage match. In other words: this is where it gets ugly.
Because, if we accept the social model, then we have to embrace all kinds of bodily variation. Our ultimate goal is create a society that is as barrier-free and accepting as possible. Sounds great. In theory.
But if we spurn all of the advances of medical technology, and we embrace all bodily variations, as the most die-hard social model advocates tell us to do, then we allow suffering when it could have been prevented. We bring into the world children with horrific genetic diseases, such as Tay-Sachs, which could have been detected through a prenatal screening, thus enabling parents to determine if selective abortion is the best alternative to allowing their child to be born with a cruel, terminal disease.
And yet…
What if we try to get out of this fix by saying something like, "Okay, we definitely want our world to be varied, filled with all kinds of bodies and minds to make our world more interesting and just plain better. And yet we want to end suffering where we can." It's good, right?
Well, Bérubé would say maybe not. Because where do we draw the line between what is acceptable and what is not? Do we allow parents to selectively abort due to Down syndrome, but not due to gender? And what happens when technology advances? Statistics show that shorter men have lower incomes and a more challenging time finding a mate than taller ones. Does this mean that we should develop a genetic test to identify and destroy embryos with "short genes"?
After all, if "quality of life" is the yardstick by which we figure out which embryos and fetuses should be permitted to be born, then who gets to say what "quality of life" means? Who gets to measure what that is and at what point does a life become not worth living?
Yikes.
These are questions that will only get harder to answer, Bérubé warns us, as technology advances. And the way we answer them will not only determine who gets to live but it will also determine how the lives of those who are carried to term will be experienced.
After all, imagine the human race without people with Down syndrome. Or without people with congenital deafness. Or without people who, after a long life, succumb to the Alzheimer's gene.
Our numbers start to get pretty thin once we begin rooting out all those conditions that could be based in the genes.