Wednesday, May 09, 2007

Parents of kids with Down syndrome campaign against prenatal testing for it

The New York Times carries an article today titled "Prenatal Test Puts Down Syndrome in Hard Focus".

It reports how in US, families rising kids with Down syndrome are campaigning against a new, widely usable prenatal test that can be used to screen for it. 90% percent of pregnancies where the fetus is diagnosed with Down get aborted. Some parents are worried that as population of people affected with Down syndrome dwindles, the care programs for them will also disappear.

But they are also worried about a much more serious problem than that. The practice is well within the area of eugenics, trying to draw a line between eliminating a genetic condition undesired by the would-be parents versus lessening the diversity of the human race. The genetic condition can be viewed as undesired since Down syndrome results in having somewhat weaker physical features, being slightly mentally challenged, and having shorter life expectancy (49 years average), but most of these individuals are still able to live fully enjoyable lives in a loving family, even if they're placing a bigger burden on their parents, and parents who actually raise such kids and therefore have first-hand experience believe how Down is not a sufficient reason to deny those kids existence. I tend to sympathise with this point of view. From the article:

Sarah Itoh, a self-described “almost-eleven-and-a-half,” betrayed no trace of nervousness as she told a roomful of genetic counselors and obstetricians about herself one recent afternoon. She likes to read, she said. Math used to be hard, but it is getting easier. She plays clarinet in her school band. She is a junior girl scout and an aunt, and she likes to organize, so her room is very clean. Last year, she won three medals in the Special Olympics.

“I am so lucky I get to do so many things,” she concluded. “I just want you to know, even though I have Down syndrome, it is O.K.”


David Veksler said...

Choosing to have a child with severe mental and physical problems is a moral atrocity. There's no way to get around the fact that Down syndrome causes suffering in everyone involved, especially the child. The parents who support bringing more people burdened with this illness into the world only want to extend their and their children's suffering to everyone else. They should be named for what they are - evil.

Every child should be loved and valued - but a fetus is not a child until he or she is born - and what kind of perverted monster do you have to be to want children to suffer their entire life? Only the religious dogma behind the hypocritical "culture of life" is capable of sinking people to this level.

Attila Szegedi said...

Thank you for sharing your opinions David, and let me tell you that I sincerely envy you because you have such a clear cut and determined opinion on the issue. I'm having trouble accepting either point of view for now and am rather torn over it.

I'm completely agnostic and don't subscribe to any religion. Now, regardless (not to split hairs), but I consider a fetus is a child before it is born. I wouldn't go as far back as the moment of conception, of course. Carl Sagan had an article coauthored with Ann Druyan, easiest way to find it is republished in his last book "Billions & Billions" where he quite thoroughly explored this very question and seems to be of the opinion that the cognitive brain activity reminiscent of human thinking isn't present earlier than the 30th week of pregnancy. But one can of course find plenty of arguments for putting the divider line at practically any point of gestation period, from conception (the radical religious viewpoint) to actual birth.

Now, the ethics of the issue depend entirely on the definition of the "person". My personal (quite contrary to any religion's) opinion is that there's no such thing as an inherent "soul" that somehow enters the fetus. My view is strictly functionalist - that our cognitive self is emergent phenomenon of our higher brain functions, and starts developing from the time said higher brain functions start operating (still in fetal period), so Sagan's analysis of when do these higher brain function kick in sounds as rather acceptable to me.

So, if terminating a pregnancy takes away the life of a concrete person already developing in there, I'd be against it. Strange as it might be, I derive this viewpoint from no religion, but from libertarian principles that respect one's right to life. Even if he/she would have a Down syndrome - watching the videos associated with the NYT article, those kids seem happy to be alive, being part of this world and their society; they appreciate and enjoy their own existence and can communicate meaningfully with non-affected individuals. It doesn't look to me that their existence is a net suffering and therefore they would've been better if they were spared of it. It's yet another situation if the deficiency in question completely rules out the possibility of acceptable standard of life, but to me it looks like specifically Down in majority of cases isn't one of these. I must also say how I don't personally know anyone with Down syndrome, so I don't claim that my understanding is authoritative.

Now, taking a point of view from the other side, if terminating a pregnancy doesn't take away the life of a concrete person (potentially since there's not yet "anyone in there"), then I'd have no problem with it. The only problem is, there's currently no hard scientifically proven method telling when does the fetus cross the line from nonperson to person, only more or less plausible assumptions, see above.

I'm lucky to be to be a parent of two perfectly healthy children, and really don't wish myself to ever get into a dilemma when I'm told that my child would be born with a deficiency and I need to decide its fate. (I don't plan on having any more children right now, so I'm probably safe.) It'd be a hell, and no matter which way I chose, I'm sure there'd be times thereafter I'd be torn and question my decision. So, I'm thankful I don't need to make such a decision. And I'm not judging those parents that must make it, no matter which way they decide.

Jeff said...

Interesting comments attila....David is a crazed bigot but that is another issue...

Your comments were very well thought out and very interesting. As a father of a son with Down syndrome all our tests were negative and out he came with DS....Surprise....

One last thought in regards to your not having to worry about these choices as your kids are both healthy.....that is great but healthy is a wierd thig about kids with ds...due to some heart defects that can occur they check every child with ds for these defects....they don't other kids and every year I read stories of devastated families who have just lost a teenage child on the sport field or court due to an un diagnosed heart issue......and so many things can happen with kids, parents and living wills that we will all have to make tough decesions in time....