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Saturday, December 03, 2005

defective detection

commenting on a newspaper article whose headline reads "Down Syndrome Now Detectable in First Trimester", regarding a new test which could "pinpoint" many of the fetuses with the "common genetic disorder" that causes Down Syndrome as soon as 11 weeks after conception, a boundless columnist writes:
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. [...]

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.

i'm struck by the suggestion that the decisions made on this issue tend to be driven by what is essentially the selfishness of the parents(-to-be). i don't know that this is necessarily true in general (and i'm sure there are those who think beyond themselves), but i just wonder how widespread and accurate an assessment it really is. the answer is perhaps somewhat scary to contemplate.

6 comments:

  1. You know, this kind of "services" have been around for a while now. E.g. in certain genetic disorder that's linked with gender (e.g. in case where sons will definitely get the disease), they have use In vitro fertilisation to get only female. It's not as old as 11wks, but definitely fertilized embryo with a week old or so. I guess the bottom line is, when does life start? And is it fair to allow the child to be born knowing he/she will suffer? But again, who are we to judge?

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  2. Hmm... sounds like my one of my earlier postings about babies.

    Just saw a news articles at ST A Difficult Choice. It talks about the choice of a couple to abort their Thalassemia major baby. Its a difficult choice indeed. I know I must not abort becos I think babies are God's gift. But the kind of pain that the kid and the caring parents needs to go through is also not easy. If you ask me, I'm not sure what I will do if I were in their shoes....

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  3. jacky: are you talking about fertilising multiple eggs and only selecting female ones to implant? for me, the short answer to the question of when life starts is when sperm meets/fertilises egg (i think there's a nice parallel to the idea of "two becoming one flesh" here - not that this is the main reason for my answer, it's just an observation).

    island: can't read ST article without subscription :p

    both: without claiming to have any great knowledge of thalassemia or other genetic disorders, i think they are somewhat different cases to down syndrome (not that i'm any expert in that either), although there are sure to be many similar/overlapping issues. i think the point of the article (at least, the one that stuck out for me) is that it questions whether it's the child's suffering(s) that the parents are trying to avoid, or the parents' own suffering... the argument being that someone with down syndrome perhaps doesn't really "suffer" all that much, if at all!

    totally random question that came to mind as i was typing this (so it might not be relevant at all :p)... is it fair to allow/encourage someone to become a Christian, knowing that they will suffer for it? (and i have to assume that suffering will be a certainty, because that's the path laid down by Christ, eg with the whole deny yourself, take up your cross etc).

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  4. Heh sorry about the ST article ;)

    Abt the random question, I guess we can only trust God that he/she will be able to look for that eternal hope rather than the present suffering.

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  5. precisely. so even though it may sound too naive or too black/white to say this, i think the end result in such situations/decisions is that one can only trust God despite the unavoidable sufferings - He is ultimately sovereign and in control, regardless of how (humanly) foolish something may seem.

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  6. agreed. easy to say but difficult to swallow :)

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