Roberto Rivera y Carlo is a regular contributor to Boundless. He writes from his home in Alexandria, Va.


Stay Connected



Being Single
Boundless Answers
Career
College
Dating & Courtship
Entertainment
Faith
Marriage & Family
Mentor Series
Office Hours
Politics
Q&A
Sex
Time & Money
Worldview
E-Mail This Article
Whose Life Is It? A Well-Born Misconception
by Roberto Rivera

A recent headline in the Washington Post said everything you needed to know about the story that followed:

"New Test Enables Doctors to Target Defectives."

Well, it didn't really say that but it should have, and the fact that neither the Post nor we can bring ourselves to put it that way says a great deal about us — none of it good.

The actual headline read:

"Down Syndrome Now Detectable in First Trimester."

The story was about a study published in the New England Journal of Medicine. The study, sponsored by the National Institute of Child Health and Human Development — i.e., your tax dollars at work — found that a blood test, combined with an ultrasound, could "pinpoint" many of the fetuses with the "common genetic disorder" that causes Down Syndrome as soon as 11 weeks after conception.

Currently, women at high risk for having a child with Down Syndrome first undergo a blood test at 16 weeks and then, if the test is positive, amniocentesis at about 20 weeks. If the results confirm the initial findings, they nearly always then have a late- term abortion. Given the potential physical and emotional complications associated with late-term abortions, it's easy to see why Catherine Spong of the National Institute called the results of the study "huge." Fergal Malone, one of the study's authors, added that "in light of this study, we should offer screening to all women in their first trimester."

If that last bit didn't give you pause, let me tell you about the book I happened to be reading when news of the study broke: War Against the Weak: Eugenics & America's Campaign to Create a Master Race by Edwin Black. The events of mid-20th century rendered the word "eugenics" (never mind "master race") disreputable. Or so we thought.

Eugenics, both the word and the idea, were the invention of Francis Galton, a gentleman-scientist who, among other things, discovered the uniqueness of fingerprints. By the end of the 19th century, improvements in nutrition, public health and governance had produced a population explosion in Britain. What troubled Galton and many of his peers was that the people doing the vast majority of the reproducing were the poor and lower classes. If this continued, Britain would become a nation composed of the "lesser classes" and their descendants.

Galton's solution was what he called eugenics, a word that combines the Greek words for "well" and "born." Galton proposed creating a "highly gifted race of men" through the use of "judicious marriages." People who possessed "talent," "grace" and "quality" would be identified and only be permitted to marry one another. Not surprisingly, in determining who possessed these characteristics, Galton fell back on standard late-Victorian prejudices: he used social standing as a proxy.

However wooly-headed Galton's ideas may have been, he didn't intend to hurt anyone. He advocated what came to be known as "positive" eugenics: improving the population by encouraging marriage and childbirth between people possessing "desirable" traits. The problem with this approach, as Galton acknowledged, was that people don't take kindly to interference in matters of love and marriage.

So, no sooner had Galton's ideas reached America than the emphasis switched almost entirely to "negative" eugenics: preventing, by any means necessary, marriage and childbirth among those deemed "undesirable." "Any means" meant just that: where persuasion wouldn't suffice — and of course it rarely did — then coercion would be employed. Coercive means could include anything from prohibiting marriage between the "fit" and the "unfit" to sterilization of the "unfit" to euthanasia of those believed to be carrying what eugenicists called defective "germ plasm."

Just as expansive as their choice of means was their definition of what it meant to be "unfit." New York gave serious consideration to a law that, arguably, would have prohibited marriage between people who wore glasses and those who didn't. Other proposed measures would have sterilized and/or quarantined people on account of their relatives' "defects."

If this sounds familiar, that's because, as Black documents, the demonic ideas about "race hygiene" that the Third Reich put into practice were, at least initially, clearly marked "Made With (White) Pride in the USA." After World War II, eugenics, as a political and scientific movement, was thoroughly discredited. Genetic research became the mostly positive force we know today.

I said "mostly" because the temptation to "play God" wasn't entirely eradicated; it's simply been cleaned up. Nobel Laureate James Watson, the co-discoverer of the double helix, has called "stupidity" a "disease" that should be eradicated through genetic research. Seemingly oblivious (or indifferent) to how he sounds, he uses expressions like the "lower 10 percent."

And that brings me back to the headline in the Post. Let's get real: a test that enables doctors to identify birth defects in utero will really only be used for only one purpose: eliminate those with the defects. More than 90 percent of children whose Down Syndrome is detected in utero are aborted. (There's no reason to think that this testing will be limited to Down Syndrome, by the way. Eventually, the cost- effectiveness of eliminating genetically-based illness in utero will prove irresistible. As Nancy Press of the Oregon Health and Science University put it in the New York Times, "If you can terminate pregnancies with a condition, who is going to put research dollars into it?")

In addition, there is subtle but real pressure on "at-risk" women to undergo pre-natal testing. When my wife was expecting, her OB-GYN raised the issue of amniocentesis. We declined saying that we wouldn't act on information we could obtain, anyway. The look on her face, while not exactly disdainful, was a long way from what Ali G would call "respek."

And what exactly is the "risk" here? Why are we having all those abortions? One thing is certain: it's not to ease the suffering of the "defective" children. They don't suffer, at least not from having Down Syndrome. They're often aware that they're different but any pain they may feel in this respect is caused by other people's reactions to the differences. From my own experience with my autistic son, I can tell you that David's autism troubles me a great deal more than it does him.

The inescapable conclusion is that the suffering we're seeking to avoid is that of the adults. How else do you explain the phenomenon of doctors being sued for the "wrongful birth" of a child with disabilities? Children with Down Syndrome or other disabilities represent an unacceptable impingement on their potential parents' freedom: they have to work harder at being good parents and they don't even get to show off with a "My Child is an Honor Roll Student At ..." bumper sticker.

If that sounds harsh, well, it is. It's also true.

There's no plausible claim of "compassion," however confused, at work here: Down Syndrome isn't Tay-Sachs, which condemns its victims to an excruciating death at a young age. People with Down Syndrome can live reasonably long and happy lives if given a chance. What stands in their way isn't their condition; it's our forgetting whose life we're talking about here; it's the way that children have ceased being ends in themselves and, instead, have become the equivalent of entries on their parents' resumes. Having a kid at the University of Virginia is good; having one who attends Williams is better.

In contrast, people who remember whose life we're talking about have a very different definition of what it means to succeed as a parent and as a human being. They won't deny that being a parent under the best of circumstances, never mind their own circumstances, can be hard. But they draw comfort and strength from recalling that our and our children's worth is determined by who we are — people created in the image of God, capable of learning and loving — and not what we accomplish.

As the best-known song from the film "Rent" asks, "how do you measure the life of a woman or man? In truths that she learned, or in times that he cried. In bridges he burned, or the way that she died." These are standards that those presently being targeted for elimination can easily meet, if we only give them a chance.

A few weeks ago at mass David put his head on my shoulder. Another parishioner looked at me and said "he looks so happy." So was I. The only suffering at that moment was that of people who don't understand what being "well born" really means.

Copyright © 2005 Roberto Rivera y Carlo. All rights reserved. International copyright secured. This article was published on Boundless.org on November 24, 2005.