Because most philosophies that frown on reproduction don't survive.

Monday, June 27, 2005

Your child's disabled?

You must be Christian...

Well, not yet, but with certain disabilities it's heading in that direction. Here are some interesting and disturbing stats.

A med student named Brian Skotka (whose sibling has Down syndrome) did an interesting study published in the American Journal of Obstetrics and Gynecology where he collected demographic information about women who had found out from pre-natal tests that their babies had Down syndrome and nonetheless carried their children to term. The methodology was to poll all the mothers in a number of DS support groups, and ask which ones had received a pre-natal diagnosis. Those who had received pre-natal diagnosis were asked further questions about their experience.

One of the interesting statistics in the study is that 42% of the women who found out their babies had DS and yet chose to bring them to term were Catholic. The religious breakdown of the rest was as follows: Protestant 35%, Mormon 4.4%, Jewish 3%, No Religion 2%, Other 12.7%.

Now, around 25% of the US population identifies as Catholic, so clearly Catholics are seriously over-represented in this group. One would assume from that that either Catholics are more likely to conceive children with DS, or Catholics are more likely to bring a child with DS to term. (Since the study only talked to women who had children with DS, women who aborted babies diagnosed with DS were automatically filtered out.)

Sure enough, the women Skotka polled reported "My 'inner voice'" and "My religion" as the two primary reasons for choosing to bring their babies to term.

This reminded me of a George Will column about aborting babies with Down syndrome which I read some time back. In it, he cites the statistic that more than 80% of the babies diagnosed pre-natally with Down syndrome in the US are aborted. So I did a little math:

From Skotka's study we have the figure that about 5000 children are born with Down syndrome in the US each year. Based on the percentage of mothers of children with DS who reported they had received a pre-natal diagnosis, Skotka estimates that 625 babies with pre-natally diagnosed DS are born each year.

Now take that figure that Will cites, that 80% of babies pre-natally diagnosed with DS are aborted. Bouncing that off Skotka's figures, that gives us 3125 babies pre-natally diagnosed with DS every year, out of 7500 conceived with DS. However, if all babies with DS were diagnosed pre-natally, and the current pattern held, only 1500 would be born a year, rather than 5000.

This may be something of an exaggeration, because it could be that a number of women refuse pre-natal testing for Down syndrome specifically because they have no intention of aborting. The thing we would need to know is if mothers of the 4375 babies not diagnosed pre-natally were offered testing and refused it, or simply were not asked.

Still. It seems pretty clear that as pre-natal diagnosis of DS becomes more common, fewer and fewer babies with DS will be allowed to be born, and of those who are born, a large percentage will be from actively religious families. There may very well come a time in the not too distant future when having a child with a pre-natally detectable genetic disability is seen as something only "Jesus freaks" and "fundamentalists" do. And it will be interesting to see if there is then a push to reduce public assistance for families with disabled children, on the theory that it's "optional" to have such a child.

6 comments:

LogEyed Roman said...

First of all, it seems interesting to me that in the 14 months since this was posted I am putting in the first comment.

Anyway. I just wanted to tell about an experience of mine at UCLA. My little story and this post are liable to shed some light on one another.

I spent some years working as a temp, including in a major medical center which I believe I will not name, since that could violate confidentiality. The temp agency really valued me for this; it seems that working in a medical center exposes people to disturbing situations that a great many do not want to repeat. For the most part, I myself really found them gratifying (I wouldn't say "fun"), even when it put me in proximity to some serious human suffering.

But one assignment I did NOT find "gratifying" was working for several weeks in an office that called itself the "Genetic Counselling" office. "Genetic Counselling" is a licensed profession. It takes a master's degree, including in genetics and "counselling".

Okay. "Genetic Counselling" consists of giving information to pregnant women regarding the probable health of their in-vitro children. The outcome was primarily about whether or not to have an abortion. I did not exactly do a study, but I overheard them say that the most common issue was Down's Syndrome.

It is rather disturbing for a pro-life character like me that the "Genetic Counselling" office with its budget and staff etc., would pretty much not exist if there were no women who would consider aborting an unborn child due to "defects." Even more, this entire profession of "Genetic Counselling" also would probably not exist without voluntary abortion of "defective" unborn children.

I have always felt a bit soiled by this. When I figured out what they were doing, shouldn't I have immediately asked for another assignment, instead of staying there until they didn't need me any more?

Now I could not help overhear them discuss specific cases. (This is why I'm not specifying the medical center; if the time I worked there were added, personal information from patients could be made public by this comment, and I won't do that). Again and again, when they spoke of women who did not want to abort a "defective" child (always "fetus" in their speech, of course; NEVER "child"), they would discuss whether or not the woman was choosing for private reasons or whether she objected to abortion of "defective" children on principle. In other words, whether she disagreed with other women getting abortions of viable children just because they were "defective." I mention this because, even just between themselves, they ALWAYS spoke of whether or not the woman was "fanatical" about abortion. Always. Never, never was the slightest attempt made to consider that there might be any chance that the pro-life position might also have some merit. Oh, and while they said that they felt they should "let" the women keep the "fetus" if she so chose (nice of them, wasn't it?), they themlselves considered it a bad choice.

In fact, I have to give myself credit: I did not stay totally silent. Once when the subject came up I mentioned that abortion rather troubled me. I did not say I OPPOSED it; I just said that I had reservations. The Genetic Counsellor I was speaking to immediately said, "Well, that shows one difference between me and you. I think people should be free to make their own choices." I replied, "Actually I think people should be free to make their own choices, but only when those choices don't hurt other people." She replied that perhaps we should not get into it further because we would get into some thorny issues of definitions. I agreed. I feel bad about that. Maybe I said enough, but part of me wishes I had gone further.

But let me recapitulate the attitude I observed there: Women who object to other women getting abortions, even if they simply express reservations, are "fanatical". I, expressing simple doubts (NOT direct opposition, even equivocal; just a position less than full approval!) was immediately characterized as being someone who did not want to let other people have free choices! No attempt whatever to ask about my position.

You know, this is the first time I have told this story in such detail, and as I reflect on it, it's far more chilling. It was a real "Politically Correct" atmosphere, where even between one another their position had to be treated as so beyond question that any oppostion had to be automatically, almost ritually, vilified. Creepy.

Now I admit that it's just one anecdote. But that does not mean it should not be considered. The fact is that the same kind of self-rightousness and blind fundamentalist holding to their position has made its appearance in plenty of pro-abortion groups, pro-gay groups, and others.

Food for thought. Or nausea.

LogEyed Roman

LogEyed Roman said...

Okay; I can't seem to shut up. Here's another comment.

An interesting detail in what lead up to the first great persecution of Christians, in Rome: The refusal of Christians to particupate in public religious rituals is well known, as is their occasional reluctance to particupate in every single war that came along. But there was a terrible plague in Rome at one point. (Medical records being what they are, we don't know exactly what it was, except that it probably was not Bubonic Plague). The Pagan Romans, desperate to survive, routinely abandoned everyone who was sick. Including their closest relatives. Christians, however, conspicuously gathered the sick and dying and nursed them. They gave Christian ministry to all, of course, but also most of the gravely ill who survived did so due to Christian nursing. The Pagans had left them to die. A great many Christians, of course, became sick from aiding plague victims, and many of them died too.

This lead to a huge amount of resentment and hatred toward Christians among Pagans (and yet another spate of conversions to Christianity, of course.) Nobody likes being made to look bad, and it's more comfortable to find some pretext--some bad motive--to place on those who showed you up. I am thinking of some of the remarks in the WSJ article about "The Roe Effect". You know, when some Liberals say that in fact they are being more resonsible due to concern for overpopulation. Right; like they are in fact yearning for children and just depriving themselves of that joy for the greater good, rather than in fact remaining childless in order to pursue their lives of personal pleasure. Then there are the ones who accused the more fertile of deliberatly trying to get the best of their opponents by sheer breeding. Darwin pointed out that in fact there's no reason to believe that that's the motive in America, though it has been from time to time, say among Palestinians on the West Bank.

I'll go further than Darwin: It seems very possible to me that attributing the motives in such a Left-spun way--that the religious conservatives are having children out of cynical political motives, while they are restraining their fertility (you think they are restraining their sexual activities?) out of self-sacrificing regard for the greatter good--that this particular spin of motives is due in fact to the same resentment, ultimately grounded in a dirty conscience, that the ancient Romans had toward the Christians who cared for the sick regardles of the cost. Of course they'd prefer to believe their spin. Otherwise they'd have to admit the consequences of their own selfish lifestyles and give up their treasured self-image of being the morally superior ones.

Perhaps I'm being uncharitable. I know some of the impulses in my heart at this moment are sinful. Nevertheless I hold to the position.

LogEyed Roman

Myron said...

Hi. This article is a few years old, so probably nobody is going to read this comment, but I've just started reading the series on demographics, and this one seems like one I should comment on.

I don't know about my genetics, whether they are in any way "abnormal" but as a congenital amputee, I wonder if diagnostic techniques today could detect that people with conditions similar to my own are going to be born amputees, and if as a result those people are going to be aborted.

And, here's the kicker - I don't instantly think that that would be a horrible thing. There are two sides to it.

On the one hand, there is the side that Catholics/other religious people will bring up, correctly. Isn't my life worth living? Of course it is. Have I been able to contribute? I have. Isn't it selfish and arbitrary, in a sense "playing God" to decide which of your offspring shall live and which do not deserve to? It is. All of those statements are correct.

But, haven't I had a difficult life because of various physical problems, some might ask? And I really have. But, those difficulties have made me into a person with an emotional makeup which you don't normally find in society today, and one which I think is very valuable. I understand things from other people's perspectives, because I spent years asking myself why people treated me the way they did. I value people who are labeled "different", because when I was younger that happened to me. My core, driving motivation is to improve society, make us all kinder and more caring, because I've seen the nasty underbelly you only get to see from the bottom of the social pyramid. And I have the ability to stand up for socially unpopular but fundamentally correct positions, because I have been ostracized and survived. To me, it doesn't matter what other people say or do, whether they agree or not, because nothing people can throw at me is beyond what I can handle. If I can live through it, I can almost guarantee I've been through more difficult things. So I can stand up for things where others would not. And I have the ability to understand that people who are written off can be some of the strongest advocates for a better society, can surprise people in some of the most amazing ways. As an example, when I was very young, my parents were told that I was of below average intelligence, and would never be able to read or write, and yet as anyone reading this or anyone who meets me can tell I am quite literate, articulate and intelligent, and the doctors were wrong about my potential. So when people say that a "defective" person ought to be aborted, I have deep misgivings because we are so often too quick to judge, and only accepting a "perfect" person is narrow-minded, heartless, and limits the diversity that is a source of our society's greatness.

So you would think that I'm 100% pro-life. But...

I also think of my parents, of my father who after his death I learned spent his life asking why God had given him a son who could not share his physical pursuits (I was always horrible at sports and outdoor activities - aside from difficulty with running due to a fake leg, I also had vision and coordination problems). I think of the rumor (unconfirmed) that my brother was by another woman, and how I always felt envious of his physical abilities, and his resulting closeness with my father, and how eventually when I asked to stay in one place with my mother (who I was close to, at age 10) my mother and my father split, my mother putting my interests above a relationship with my father that was not working. And when he passed away shortly thereafter, my mother blamed herself for not going with him, and found herself unable to manage a chronic condition successfully during a grieving period, and passed away as well, leaving myself and my brother as young teenagers to be raised by separate members of our extended family. Although all of this was beyond my control, I do wonder how much suffering could have been avoided if I had been born "normal". Not only my own difficulties as a young child, but the suffering and deaths in my family, who may well have been able to stay together (they were fundamentally good people). And I wonder, where my "differences" aren't really as major as a lot of other developmental problems out there, whether it isn't sometimes the right decision to abort. I think of the hundreds of thousands of dollars that have been spent on prosthetics for me, and wonder many other people's lives could have been enriched for that price. And when you add up all of the costs, when you really think clearly about this issue, it means two things.

1. I have a lot of work to do to contribute to the world, if I want to make my life a net-positive influence. I intend to do it, but I'm going to have to find a way to make a pretty amazing contribution.

2. The decision to abort a "defective" child isn't as clear-cut as either the religions or the genetic counselors of the world make out.

So, what is my answer, if someone should ask me whether a "defective" child should live or be aborted?

...

...

I would tell them this story, and ask them to think very hard about it, not to make a quick or rash decision. And I would do everything I could to make sure they understood the importance of the decision they were making. And then I would respect their right as parents to decide.

Myron said...

And I just realized that "I think of the rumor (unconfirmed) that my brother was by another woman" isn't going to make sense without further explanation. :)

After I was born, my mother decided not to have any more children. When I was about 4 years old, she and my father decided to adopt from a woman who I was told at the time didn't want the baby she had, and so where mom wanted another child but didn't want to risk another pregnancy, adoption was the way to go. As you can probably tell by the fact that I didn't think to explain this at first, being adopted didn't make him any less a brother, though :).

Anywho, turns out the mother (who I have never met) was a woman who worked on one of the military bases with my father, and given the strong resemblance between my brother and my father... well, I've had one extended family member say my brother was probably dad's son, but other than that I have no confirmation of his parentage - his birth records listed the father as unknown.

Can I Change A Life? said...

Myron,

I can't see the date you posted this so I'm assuming you'll never see this comment. But for those who do, remember one thing.

No matter what happened to you and your family, you have eternal life to consider. No matter their unhappiness, or even yours, there is eternal life, which makes this one seem but a grain of sand or less in time.

So if you're basing decisions as to whether or not to abort only on happiness on earth, you're basing them on the wrong perspective.

For that matter, if you're basing on happiness, it might be wise to look into things like genetic potential for depression.

But there's more to it than that for Christians. We base it on God. If He created a life, who are we to tell Him He's wrong?

I also want to comment on something from the original posting. Regarding people who turn down prenatal testing because they wouldn't abort anyway and there is risk of miscarriage, yes, that happens. I know because I turned it down just for that reason.

Myron said...

"Myron, ..."

Hi!

I wrote that several years ago, but I have an e-mail auto-tracker thing, so your comment just appeared in my inbox.

It's all very well for you to claim that there's eternal life, but I see no reason to think that there is. I think this is all we've got. Which doesn't mean we have to focus on individual happiness - the collective good is definitely worth considering, as human society is a whole lot longer lived than any individual. But, to suggest that you know for sure anything is eternal... well, you can insist that you're sure, but do you really know for sure what your eternal life is going to be like, or how eternal or limited the next phase of your life (if there is one) will be? I think "don't worry about anything that happens in this life, you have an eternity after you die which will make this life's happenings insignificant" is a dangerous way to think. It provides an excuse to do all kinds of stupid, ridiculous things during this life, which may (if you're humble enough to admit to not being absolutely sure about the nature of any afterlife) be the only life you've got.

You know you have this life. That, you can be sure of, because you're living it right now. Don't place your bets on an eternity you don't know or understand. Hope for eternal life, fine. But don't lose sight of the fact that your hope might not pan out exactly like you're thinking it will. Or, to say the same thing in a folk-wisdom type way, "Don't count your chickens before they're hatched".