Down Syndrome Disappearing: The Triumph of the New Eugenics

The New Atlantis » At Home with Down Syndrome

Today I found a great article that deals with an issue we explored during the last semester of my "What is Normal" class last year: the extraordinarily high abortion rate of fetuses diagnosed with Downs Syndrome. Actually the data that this article is based upon comes from a British study published in 1999 but it seems that its only been recently that people have been paying attention to this as an issue, like in this NY Times series and the article linked in this posting title.

So what does it mean that we are losing an entire segment of the human population? How should we respond? Are we all diminished because of this mass extermination of children with Down Syndrome?

One of the key issues for me when I look at this issue is trying to parse out the fine line between valuing human diversity and the right for all individuals to live a rich, full, rewarding life, and the right for women to have a choice regarding their bodies. This is one of those sticky bioethical issues that pits two equally valid claims against the other creating a critical quagmire for people on both sides of the issue. Of course, this is just another flavor of the Ashley X question and the right to life/death issues that have recently spawned a firestorm of debate within the disability and bioethics communities.

Personally, I think that it's appalling that a mother and/or a set of parents would choose to terminate a pregnancy on the basis of a positive prenatal test for Down Syndrome. Down Syndrome is like other forms of human diversity, a unique expression of the richness of the human genetic code. Individuals with Down Syndrome, and indeed all disabilities, have a right to live...just like everyone else. This is a great example of the social construction of disability because it illustrates how we have placed arbitrary judgments on what type of fetus is "desirable" or "undesirable". Indeed, if we were to develop a prenatal test for hair color and later found out that 90% of the fetuses with red hair were being aborted there would be a worldwide outcry...but because we are talking about a "disabling" condition, there is little to no attention to this issue. In fact, there are doctors and policies that encourage the abortion of fetuses with Down Syndrome, and there are parents for whom the decision to abort a child diagnosed with this condition is a foregone conclusion.

And yet, the government and society at large does nothing to stop it. Why? Because we still live in a world where disability is considered to be a deficit and it would be better for a child not to be born than to go through life living with a diverse manifestation of the human genome. At an even deeper level this is a reemergence of the eugenics policies of the early 20th century (of course this assumes that the eugenics movement actually went away...unfortunately following WWII it just went underground, but it is still a dominant discourse in the the realm of social policy and genetics). An advocate of eugenics would see this as a tremendous triumph...indeed it may be the most complete triumph of the eugenics movement to date. Certainly the Nazi attempts at exterminating certain "classes" of "undesirable" citizens was marginally successful within their regional sphere of influence; but this decimation of the population of individuals with Down Syndrome is an even greater success and is a genocide that probably far surpasses the Nazi attempts to eliminate individuals with disabilities during Aktion T4.

Okay, I have a lot more to say here, but I've got a little daughter struggling with asthma that I need to go and attend to. On an even more personal note, I have to wonder how many parents would choose to abort a fetus if there was a test for asthma? Is it a challenge for parents and child? Yes. Does it make my daughter a more compassionate and understanding individual when she sees her friends or family sick? Yes. Does it diminish her quality of life? No...it's just different. We all have issues, challenges, and bodies that don't do what they are supposed to, it's a part of being human...

Okay, I'm off to do the breathing treatments and watch Disney princess movies...more to come here as I think about this issue this afternoon...