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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.
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