Ship of Fools: Purgatory: "Tentative pregnancy"/prenatal euthanasia

Thread: Purgatory: "Tentative pregnancy"/prenatal euthanasia Board: Limbo / Ship of Fools.

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Posted by Laura (# 10) on :

I stole my OP title from a book of this name, which deals with the way in which (the author contends) the increasing recommendation and use of prenatal diagnostic procedures encourages a tentativity toward the child, that it is "tentative" until it's been proven by such testing to be good enough to live. If you're interested, the first several pages of her book may be viewed on Amazon here The Tentative Pregnancy: How Amniocentesis Changes the Experience of Motherhood

As she sets forth, there is a terrific opporunity but also tremendous risk to the parent-child-society relationship presented by the increasing use of prenatal diagnosis of fetal abnormalities followed (nearly always) by abortion. Her thesis is that it presents a conundrum. What prenatal testing & abortion as a regular phenomenon does, is to set up situation in which the mother wants the fetus, and therefore, embraces it as a "baby", but must also simultaneously feel willing to abort it if it proves not good enough to live.

The way this works in real life* is that over 35 you are offered amniocentesis. The chances of anything being really wrong are generally low. Non-invasive tests can now identify pretty well the women at higher risk. But the only way to find out for sure is an invasive procedure that raises a 1/200 to 1/500 risk of miscarriage. So you have this bizarre conversation in which you say, "I really want this baby if it's healthy and really don't want to risk a miscarriage, but I want to be able to abort the fetus if it's really damaged". You see how weird that is?

Her thesis is that this interferes with the total acceptance that parents must give children and that the effects of that failure of total acceptance are more pervasive than just resulting in a "happy reduction" in numbers of damaged people.

Now she recognizes that there are circumstances in which it seems totally understandable, as with people who carry Tay-Sachs or other very rare but fatal genetic conditions. But as she notes, the vast majority of testing is to get at more common things that are not as serious.

Anyway, very long OP for which, apologies, but it's something very much on my mind that seems to deserve discussion.

*I know about this first-hand because a "friend" is going through it now. [Smile]

[thread title changed to more accurately reflect topic of discussion; later edited for archiving]

[ 06. September 2005, 05:08: Message edited by: RuthW ]

Posted by Laura (# 10) on :

I should hasten to clarify that this is not a "pro-life" standard position she's putting forward. It's more of a philosophical exanination of what these testing procedures mean for parent/child relations and how society views and supports children who are disabled. It's not a long reach from "you can abort the disabled child" to "you ought to abort" that child. The societal implications of that shift are by themselves, huge.

Posted by Choirboy (# 9659) on :

Our last experience with this was roughly three years ago when my wife was pregnant with our daughter. I don't know if things have changed since then.

This also is more along the lines of medical background for the OP, rather than an opinion on the central point of the impact or lack thereof on the 'indecisiveness' about the fetus/baby status on our views of pregnancy, birth and humanity. Sorry if this appears to be a bit of a rant, but there is a pet peeve of mine here (unrelated to abortion or politics). Apologies to all for whom this information is 'old hat'.

In our neck of the woods, women were not 'routinely' offered amniocentisis. Rather, they were offered that procedure if a screening test of the mother's blood (drawn from the arm) indicated an increased likelihood of age-related chromosomal deficiencies in the fetus compared with that of a 35 year old mother (or if there was evidence of the possibility of hereditary disorders).

Important points - 1) age-related chromosomal deficiencies include Down's syndrome, spinobifida, and some other very rare outcomes that are truly beyond bearing - organs forming outside the body of the fetus, etc. There may be others that I'm missing out.

It does not include hereditary genetic disorders such as Tay Sachs. Separate genetic history and counseling for the parents is involved with persons of certain heritage (e.g., myself as French Canadian) to estimate these risks. These risks may separately inform the decision about whether to have amnio or not.

The more common of the age-related chromosomal issues, Down's and perhaps spinobifida, are not nearly as bad as the very rare ones, but they do require that parents be capable of dealing with 'special needs'. I didn't think I was that kind of parent, but other people might believe they are. And we can always be wrong about ourselves, one way or the other.

2) ...as compared with a 35 year old mother. On average, if you were 35 years or older, you would have a positive screening test. That did not mean your baby had problems, but rather that your risk of problems was higher than for a fetus of a 35 year old mother. I don't recall if they gave an estimate of how much higher.

3) Why 35? Because the estimated risk of miscarriage due to the amniocentisis was break even with the risk of one of these age-related chromosomal issues.

It is #3 that I have the biggest problem with. I will bet that 80% of those who receive that blood test and get genetic counseling don't understand what a screening test is, or how to interpret a relative risk. But implicit in the decision of whether to have amnio is balancing the risk of the miscarriage against the other outcome. If you are content to have a Down's baby, then age 35 is not the break-even point for you in terms of risk. Even if you thought you'd have an abortion in the presence of one of the other genetic disorders, this is not the appropriate break point for a rational decision on the matter.

In our case, we did not get the amnio, despite a slightly elevated risk of age-related chromosomal problems. I am far from convinced that this practice really involves 'informed consent' of the parents; not because hospitals don't try, but because the grasp of mathematics by so many of our population is so woefully inadequate. I know for a fact that our discussions with our genetic counselor got a lot easier when I told them I was a biostatistician and they could use some of the technical terms. The English language equivalents turn into phrases that are extremely cumbersome!

Posted by tclune (# 7959) on :

quote:
Originally posted by Laura:
...So you have this bizarre conversation in which you say, "I really want this baby if it's healthy and really don't want to risk a miscarriage, but I want to be able to abort the fetus if it's really damaged". You see how weird that is?

Her thesis is that this interferes with the total acceptance that parents must give children...

I have no problem of any sort with abortion. I think that the conflation of language involved in referring to a fetus as a "baby" is intrinsically political. There is nothing at all weird about saying that you want to continue a pregnancy if there is a strong possibility of the newborn being physically normal, and not otherwise. The fact that checking involves some increased risk of creating abnormality is an important point to consider when deciding whether or not to perform the test.

I do, however, find something totally bizarre about saying that a parent must (or even can "totally accept" their children. In my experience, it is often barely within a parent's reach to even tolerate their children (a fact that goes both ways). Setting up a Hallmark greeting card view of parenting and family is massively counter-productive.

--Tom Clune

Posted by sharkshooter (# 1589) on :

How much value do we place on human life if we are only willing to accept the ones we consider good enough?

Posted by English Ploughboy. (# 4205) on :

I would agree with the OP that the whole issue unsettles me. I think we are in a very consumer orientated society when everything has to be perfect and there must be a pill to cure every ill.
One can understand why a forty year old lady with a diagnosis of downs syndome in her foetus would want an abortion but one can also understand how this must make people with said syndrome feel living in a society that would idealy see them never born.
The cleverer we get at medical technology the larger the can of worms that is opened up. We can keep babys alive at younger and younger stages of gestation but how often are they brain damaged.
We spend millions in the west and look to Niger with thousands starving for want of simple nutrition.
We need to get our priorities right as a world as well as individuals.

Posted by Laura (# 10) on :

Tom:

With respect, the author is not remotely putting that forward - the Hallmark thing.

But let's set her aside and talk about us people of faith in situations like this -- I just used the Op as a starting point for this very loaded topic.

I do think that the availability of these technologies raises ethical issues yet I don't see most people actually grappling with them much -- most over-35s simply follow recommendations and have the amnio. I have in front of me a guide to that procedure the last paragraph of which deals with "termination" in case of bad outcome but says nothing about gathering information about the diagnosed problem to make an informed decision about how bad that condition really is. There's a pretty big scope of difference between sickle cell anemia, Tay Sachs, Cystic fibrosis and Down's Syndrome in terms of real outcome.

For example, in the case of anencephaly, I think I can say wouldn't hesitate to teminate, because death upon birth is certain in that case, the chance of life is nil and therefore going forward you have the risks inherent in childbirth with no countervailing benefit. (I do know, before anyone points out, that anencephaly and other gross organ problems are generally diagnosable by non-invasive sonogram and not by amniocentesis or CVS).

I think also that a lot of people don't understand statistics at all. If your assessed risk of having a kid with Down's Syndrome is 1/1400 (mine was thus assessed this last time by a genetic counselor by non-invasive testing) and the risk of miscarriage from the amnio is at best 1/500, well, I do understand statistics.

But what that analysis does not take into account is what your risk-tolerance is. That is, even though your risk of having a baby with a major defect is low, how do you feel about your ability to tolerate having a kid with that sort of defect?

But then, maybe, if one has no tolerance for defects, perhaps one oughtn't to be in the business of having children at all. There's no guarantee after all, that your apparently normal child won't develop autism or something far worse than a mild case of Down's syndrome.

Posted by Choirboy (# 9659) on :

O.K., now about the OP. I do think the whole age-related chromosomal thing is overblown.

Does the tentativeness of that state prior to receiving amnio results change our opinion of motherhood or the fetus? I think in my own personal situation it did not affect my view of my wife's pregnancy and our fetus one bit, but we didn't get an amnio. We were always in a constant state of anticipation on so many questions about our child until birth (and it continues); a few more questions didn't change my perception of her abstractness as a person prior to birth, and her concreteness afterwards.

But does the availability of screening and amnio change our perception of motherhood and creating children generally? Perhaps it has, but it is part and parcel of a whole raft of other changes in society, not the least of which being the increased age at which women become pregnant compared with some years ago [I do wonder where the point in history should be for comparison - what did the pioneers in the west do? Are women pregnant at an increased age compared with then?]

Suppose none of this testing were available, but we knew that there was an increased risk of age-related chromosomal defects as age increased. Would 'older' mothers-to-be be just as tentative about the status of their baby until birth as they supposedly are now until the amnio results come back? The difference would be that it would be too late for an abortion, but the tentativeness would remain.

Does any affect of this tentativeness on the mother-child relationship survive the confirming results / birth? Are our relationships so conditioned by the time of birth? I have to expect that any real effect, if it exists, diminishes rapidly over time and is probably non-existent by an early age.

If this affects anything, I think it would be women's decisions to become pregnant as they approach 40, and our general policy decisions regarding childbirth - all very important stuff. But I don't think it impacts particular mother-child or parent-child relationships in the long term.

Posted by sharkshooter (# 1589) on :

quote:
Originally posted by Laura:
... maybe, if one has no tolerance for defects, perhaps one oughtn't to be in the business of having children at all. ...

Like anything in life, there are no guarantees about the future. Some actions/activities may bring about unintended/unexpected/undesired results.

If you don't think you could consider life without seeing, should you undergo a procedure that has a 1/500 chance of loss of sight? If you could not consider life without walking, should you particpate in activities with a chance of paralying you?

Does not the same thinking apply to conceiving a child?

Posted by Laura (# 10) on :

Interestingly, I read a study which stated that even though women were enterprising pregnancy more often later than 35, the rate of invasive testing had actually dropped off a bit. OBs see this as good to the extent that it drives them nuts that most of the "positives" from screening tests turn out upon invasive testing to be normal, in which case, the risk of miscarriage looms larger than the other risks. They hate the notion that most of those miscarriages weren't "worth" the risk. They really want there to be non-invasive true diagnostic tests, which the new nuchal translucency screening comes pretty close to.

Posted by Laura (# 10) on :

quote:
Originally posted by sharkshooter:

quote:
Originally posted by Laura:
... maybe, if one has no tolerance for defects, perhaps one oughtn't to be in the business of having children at all. ...
Like anything in life, there are no guarantees about the future. Some actions/activities may bring about unintended/unexpected/undesired results.

If you don't think you could consider life without seeing, should you undergo a procedure that has a 1/500 chance of loss of sight? If you could not consider life without walking, should you particpate in activities with a chance of paralying you?

Does not the same thinking apply to conceiving a child?

Well, driving carries fairly significant risk of major bodily harm, and that doesn't stop most people, yet it could hardly be said that they were accepting a 1/x risk of harm -- it's a trade-off. Driving confers a benefit which balances the risks (whatever they are).

Posted by Choirboy (# 9659) on :

quote:
Originally posted by Laura:

quote:

I do think that the availability of these technologies raises ethical issues yet I don't see most people actually grappling with them much -- most over-35s simply follow recommendations and have the amnio. I have in front of me a guide to that procedure the last paragraph of which deals with "termination" in case of bad outcome but says nothing about gathering information about the diagnosed problem to make an informed decision about how bad that condition really is. There's a pretty big scope of difference between sickle cell anemia, Tay Sachs, Cystic fibrosis and Down's Syndrome in terms of real outcome.

One limitation is the timing. Amnio results take a couple of weeks to process (or at least we were told so). If you get your test at say 22 weeks, and have the results at, say, 24 weeks and now have to start research and decision making, how late a term abortion are we talking about? This only matters in those "gray area" conditions, but those are the hard ones.

People clearly need to be well prepared in advance of getting the results. I'm convinced that occurs in the case of inheirited defects - there is at least a potential of family history, and you can screen this _very_ early as it is about the parent's DNA. I'm less convinced this research and education happens early with respect to the age-related chromosomal defects.

quote:
But what that analysis does not take into account is what your risk-tolerance is.

Amen again. Investors do this kind of personal risk tolerance assessment all the time - why should it be so much harder for hospitals to offer some sort of personal risk assessment tool?

[ 02. August 2005, 18:09: Message edited by: Choirboy ]

Posted by josephine (# 3899) on :

I have a particular problem with abortion as a means of treating birth defects -- and not because I am opposed to abortion. Rather, I am opposed to eugenics.

In fact, I am so strongly opposed to it that I'm not sure I can discuss it in purgatory. I'd probably better stop now, and think some more. And maybe I can come back to the topic later.

Posted by Choirboy (# 9659) on :

quote:
Originally posted by Laura:
Interestingly, I read a study which stated that even though women were enterprising pregnancy more often later than 35, the rate of invasive testing had actually dropped off a bit.
[....]
They really want there to be non-invasive true diagnostic tests, which the new nuchal translucency screening comes pretty close to.

Was it a big decline? I'd be curious about the rates of obtaining amnio given a postive screening test and how they changed over time. Do you have the reference handy?

Surely the latter point would greatly ameliorate the problem. Unintended miscarriage from amnio could soon be a moot point, at least as far as age-related defects go (which is the lion's share of the problem).

Posted by FCB (# 1495) on :

I recently read an article on the growth of what the author called "eugenic abortion". While hardly objective and disinterested, the article did present some statistics that I found chilling:

quote:
Medical researchers estimate that 80 percent or more of babies now prenatally diagnosed with Down syndrome are aborted. (They estimate that since 1989, 70 percent of Down syndrome fetuses have been aborted.) A high percentage of fetuses with cystic fibrosis are aborted, as evident in Kaiser Permanente's admission to The New York Times that 95 percent of its patients in Northern California choose abortion after they find out through prenatal screening that their fetus will have the disease.

Having known people both with Down Syndrome and with Cystic Fibrosis, and seen the good that they can bring into the world, I can't help but see this as saying something extremely troubling about us humans.

FCB

Posted by sharkshooter (# 1589) on :

quote:
Originally posted by Laura:
Interestingly, I read a study which stated that even though women were enterprising pregnancy more often later than 35, the rate of invasive testing had actually dropped off a bit. OBs see this as good to the extent that it drives them nuts that most of the "positives" from screening tests turn out upon invasive testing to be normal, in which case, the risk of miscarriage looms larger than the other risks. They hate the notion that most of those miscarriages weren't "worth" the risk. They really want there to be non-invasive true diagnostic tests, which the new nuchal translucency screening comes pretty close to.

But is the reason that, based on the uninvasive tests, more women are having abortions immediately rather than undergoing the invasive tests?

Posted by Laura (# 10) on :

quote:
Originally posted by josephine:
I have a particular problem with abortion as a means of treating birth defects -- and not because I am opposed to abortion. Rather, I am opposed to eugenics.

In fact, I am so strongly opposed to it that I'm not sure I can discuss it in purgatory. I'd probably better stop now, and think some more. And maybe I can come back to the topic later.

Josephine:

Your strong views are welcome in Purgatory, as you know. It'd be a shame if you stayed out of the debate.

The reason that I raised the issue is that I think eugenic abortion is what really concerns me, in terms of what it says about us as people of faith and how we view people and children. But it's an issue I can see many sides of, very easily.

Posted by Laura (# 10) on :

quote:
Originally posted by sharkshooter:
But is the reason that, based on the uninvasive tests, more women are having abortions immediately rather than undergoing the invasive tests?

No. It's very unusual for people to abort because of the early screening tests -- they don't give you enough information. All they can do is give either peace of mind that a problem is unlikely, or they provide a higher risk assessment in which case amnio is recommended. For a wanted child (which the kids under discussion are, typically) there's no reason to have an abortion without further testing.

Posted by Foolhearty (# 6196) on :

A tangent, but:

I was shocked a few years back when a friend who was also an adoptive mom shared with me some stats she'd heard when she was adopting.

Apparently, there's an even greater "consumer mentality" with adoptions; a significant percentage of adopted children get returned.

She learned this because it had become apparent that her own daughter had serious learning differences, and had sought advice (NOT an effort to return the child) from the agency overseeing the adoption.

Aside to Laura: Not all anencephaly leads to immediate death. I once knew a 21-year-old person with only a brain-stem. About the size of a 3-month-old baby, no apparent meaningful responses to stimuli except reflexes, but alive at age 21 in the institution where he'd been committed shortly after birth.

Posted by Lamb Chopped (# 5528) on :

What bothers me about the whole amnio thing is precisely what somebody above mentioned, that so many folks simply do it because "I'm 35 or older, and that's what you do, there's no real choice here." Either the medical people haven't explained the reasoning adequately (or at all), or the woman wasn't listening well enough (likely when discussing such a stressful subject). And so we get a bunch of folks risking miscarriage when at least some of them would not if they only got the message straight.

It hits home particularly because of a friend and church member of ours who was the one in two hundred who miscarried a fine, beautiful baby due to an amnio she didn't understand. We were the ones who rushed to the hospital and baptized the child as soon as it was born, too early to live, and then held her and grieved with the parents and planned the funeral. It was the last child she would ever have.

I don't know what the answer to this is. Would it be possible somehow to make "not-having-an-amio" the default position for normal pregnancies, with amnio mentioned and offered as an option, but perhaps not so prominently stressed? I'm considering another pregnancy and will certainly be offered amnio due to my age--offered by the doctor; pushed by well-meaning family, friends, etc. etc. etc.

I'm sorry to have wandered from the OP. I do think that all pregnancies normally start out "tentative" just because it takes time to comprehend and reconcile oneself to the fact that another person has just arrived in one's life, and will be taking it over for the next twenty years!

But since amnio comes so late in the pregnancy and (for some) raises the thought of termination), I do think it heightens and prolongs the tentative-ness. But I guess any late term screening test would do the same.

In older days, when we didn't have these tests and had to go by guess, I would imagine the "tentative" period went much quicker. Since you weren't going to find out till birth anyway, you might as well get on with the bonding process.

Posted by Sarkycow (# 1012) on :

quote:
Originally posted by FCB:
Having known people both with Down Syndrome and with Cystic Fibrosis, and seen the good that they can bring into the world, I can't help but see this as saying something extremely troubling about us humans.

FCB

Yes, they can bring much good into the world. And they can be wonderful people.

However, if parents really don't feel that they can cope with bringing up a disabled kid, then said child will be born and put into care. And people looking to adopt kids don't go for the 'damaged' ones. So you get a sizeable proportion of kids in care homes being disabled. And they'll be in care/a special service all their life.

How is this a good outcome?

Sarkycow

Posted by Lamb Chopped (# 5528) on :

It's a crappy outcome. But I do think it's better than being dead.

And yes, I would (and may soon!) take a damaged child.

Posted by Laura (# 10) on :

quote:
Originally posted by Foolhearty:
A tangent, but:Aside to Laura: Not all anencephaly leads to immediate death. I once knew a 21-year-old person with only a brain-stem. About the size of a 3-month-old baby, no apparent meaningful responses to stimuli except reflexes, but alive at age 21 in the institution where he'd been committed shortly after birth.

Okay. That's actually worse than death shortly after birth. Yikes.

Posted by Lamb Chopped (# 5528) on :

Oh, meant to say--one of the smartest things I read about testing during my first pregnancy said basically,

quote:
Go ahead and get the tests done if you want, but don't kid yourself about losing your worries, since you will simply and surely replace the fear of Down's, etc. with the fear of cleft palate, ears like Uncle George's, etc. that are not testable. Pregnancy is the beginning of a slippery slope of worry you will careen down all the rest of your life.

Maybe an overstatement, but there's some truth in it!

Posted by Sarkycow (# 1012) on :

Too late to edit my previous post...

I'm not sure that the position stated above in my post is a good one. It's one that makes me sad. It doesn't say good things about us as people of faith.

It is, however, realistic - it's what society tends to think. And society isn't composed exclusively, or even sizeably, of people of faith.

quote:
Originally posted by Lamb Chopped:
It's a crappy outcome. But I do think it's better than being dead.

Watch me not joining in this tangent into the rights and wrongs of abortion.

Sarkycow

Posted by josephine (# 3899) on :

quote:
Originally posted by Sarkycow:
However, if parents really don't feel that they can cope with bringing up a disabled kid, then said child will be born and put into care.

Maybe. Or maybe the parents will find strength and resources they didn't know they had. That's what you have to do if your two-year-old has a stroke, and you suddenly have on your hands a child who is hard of hearing, blind, and paralyzed on one side. Or if your ten-year-old falls out of the tree and lands on his head and is paralyzed from the neck down. Or if your 16-year-old has a head-on collision with a drunk driver and suffers traumatic brain injury and has to relearn how to walk, how to talk, how to tie her shoes.

I assume that you are not willing to euthanize those children.

I would also assume that you wouldn't euthanize the apparently perfect infant that later turns out to be autistic or mentally retarded. You'd just expect the parents to deal with it.

Some can't, of course. But the child shouldn't be killed because of the parent's inadequacy.

Eugenics is wrong. It's evil. And it's just as evil at 24 weeks gestation as it is at 24 months or 24 years.

When evidence was found that a group of the ancestors of the human race had cared for one of their own who could not care for himself, this was nearly universally noted as the dawn of true humanity. What does it say about us if we're not even willing to care for our own children?

May God have mercy on us all.

Posted by Foolhearty (# 6196) on :

It's a very hard call, any way you look at it.

I live in a state where the possibilities of placing a severely disabled child in care are very limited -- no public institution for same, and a foster-care system which is severely underfunded.

I have also seen what happens when parents who cannot cope are expected to bring up a child who needs heavy-duty support. Some pretty horrific abuse can go on.

What really wrenches my heart is to see moms in their 70s and 80s, often now widowed or divorced, struggling to lift and change and clean their now middle-aged offspring -- some of them bigger and heavier than their moms.

Posted by sharkshooter (# 1589) on :

quote:
Originally posted by josephine:

quote:
Originally posted by Sarkycow:
However, if parents really don't feel that they can cope with bringing up a disabled kid, then said child will be born and put into care.
Maybe. Or maybe the parents will find strength and resources they didn't know they had. That's what you have to do if your two-year-old has a stroke, and you suddenly have on your hands a child who is hard of hearing, blind, and paralyzed on one side. Or if your ten-year-old falls out of the tree and lands on his head and is paralyzed from the neck down. Or if your 16-year-old has a head-on collision with a drunk driver and suffers traumatic brain injury and has to relearn how to walk, how to talk, how to tie her shoes.

...

Or, your grand-father has alzheimers. Or your spouse suffers a paralyzing stroke.

Once we start deciding who is worthy of life, we start pretending we are God, rather than relying on God for strength to deal with life.

Posted by nicolemrw (# 28) on :

or, josephine, maybe they'll find that they can't deal with it. as my parents couldn't deal with very well with my brothers autism. oh they tried hard enough. they tried until it nearly tore them apart. and it was a miserable way for the other two of us to be brought up. now mind you, theres no prenatal test that would have revealed my brothers problem before he was born, so its a moot point. but i get so sick of this "god never gives you a burden to heavy to bear" crap that some people spout to other people who are struggling. because its not true, and sometimes they _can't_ handle that burden.

i don't understand your position, actually. you said several posts up, that you have no problem with abortion. but you do have a problem with abortion for eugenic reasons? so what reasons do you think do justify an abortion? only if the fetus is perfectly healthy? that seems convoluted somehow.

Posted by Lamb Chopped (# 5528) on :

Dang. Now I feel guilty for opening the gate into Dead Horse territory. *beats breast*

I don't think God ever intended a nuclear family to handle such a situation. That's what relatives, friends and neighbors are for. Pity so few come through.

Posted by josephine (# 3899) on :

quote:
Originally posted by Foolhearty:
I live in a state where the possibilities of placing a severely disabled child in care are very limited -- no public institution for same, and a foster-care system which is severely underfunded.

If eugenic abortion were only for truly severe disabilities, I could deal with it. No matter how strongly I feel about it in the abstract, I honestly can't say what I would do if I were told that a child I was carrying had anencephaly. Those are truly hard choices, and all I can really say is, may God grant them grace and mercy.

But eugenic abortions aren't done just for severe disabilities. They're done for all kinds of things.

It's not talked about, as the article FCB linked to pointed out. But it's done.

And what effect does that have on people with disabilities? Autistic adults know that the "support organizations" who are raising funds and working with researchers, looking for a "cure" are looking primarily for genetic markers. Their opinion of that is clearly expressed here. Scroll down for the editorial cartoon. Then look at the green poster, and click the Then and Now link.

If we accept eugenic abortions, where do we stop? We saw where the eugenics movement led in the last century. How do we keep from going there again?

Posted by Laura (# 10) on :

It's okay -- it's hard to set aside personal feelings about abortion, but we need to treat that as "grey area" for the purposes of this debate (or you know where the thread will end up!)

The point is that abortion for eugenic or non-eugenic purposes is in fact legal, but how does that possibility along with the availability of prenatal testing inform us as people of faith in dealing with these issues?

Interestingly, from a political point of view, abortion for perceived strong eugenic justification is pretty non controversial, inasmuch as abortion is ever noncontroversial, and I think this says a lot about us, too. I've been having a variation of this discussion with a lot of friends lately, and they all, to a person, said that they'd abort for Down's or one of the other trisomies without much thinking about it. It was self-evident that this was the better choice.

To those who've asked for statistics on the rate of invasive testing/relation to abortion, I'll try to find the article I was reading and post it here for you.

Posted by Laura (# 10) on :

quote:
Originally posted by josephine:
And what effect does that have on people with disabilities? Autistic adults know that the "support organizations" who are raising funds and working with researchers, looking for a "cure" are looking primarily for genetic markers. Their opinion of that is clearly expressed here. Scroll down for the editorial cartoon. Then look at the green poster, and click the Then and Now link.

From that link of Josephine re: the eugenics movement, it shows a photo of an old sort of light display that was used to make people aware of the frequency and cost of the birth of "defectives":

quote:
A popular 1926 exhibit from the American Eugenics movement reads, "Some people are born to be a burden on the rest. Learn about heredity. You can help to correct these conditions." Five panels are displayed, with flashing lights on them.

The top one is captioned, "This light flashes every 15 seconds. Ever 15 seconds $100 of your money goes for the care of persons with bad heredity such as the insane, feeble-minded, criminals, and other defectives."

Under "America needs less of these," there is a light that flashes every 48 seconds -- "Every 48 seconds a person is born in the United states who will never grow up mentally beyond that stage of a normal 8 year old boy or girl" -- and one that flashes every 50 seconds -- "Every 50 seconds a person is committed to jail in the United States. Very few normal persons ever go to jail."

Under "America needs more of these," there is a light that flashes every 16 seconds -- "Every 16 seconds a person is born in the United States", and another that flashes every 7 and a half minutes -- "Every 7 1/2 minutes a high grade person is born in the United States who will have ability to do creative work and be fit for leadership. About 4% of all Americans come within this class."

Which is totally horrifying and also probably bullshit to boot. But as Josephine indicated, even the most anti-eugenics position stalls at anencephaly. So (to sum up) there is still a line where eugenic abortion is okay, it's just a question of where the line is.

[ 02. August 2005, 19:14: Message edited by: Laura ]

Posted by josephine (# 3899) on :

quote:
Originally posted by nicolemrw:
i don't understand your position, actually. you said several posts up, that you have no problem with abortion. but you do have a problem with abortion for eugenic reasons? so what reasons do you think do justify an abortion? only if the fetus is perfectly healthy? that seems convoluted somehow.

I didn't say that I don't have a problem with abortion. I said that my opposition to eugenic abortion is not based on my feelings about abortion, but on my feelings about eugenics. I am absolutely and unequivocally opposed to eugenics.

Abortion is another matter entirely. My view on that topic is actually rather complex. I think some abortions are appropriate, and some are not. But I have no interest at all in discussing abortion per se. It's a dead horse.

Posted by BroJames (# 9636) on :

We were offered amniocentesis with one of ours - can't remember which now. I think in the UK it is/was offered to over-30s. Our decision was that as its result wouldn't change our view about the continuance of the pregnancy we saw no point in facing the risk.

On the subject of the OP: Don't all parents have a tentative approach to pregnancy? The mere fact of pregnancy is not secure until about twelve weeks (spontaneous abortion being not uncommon before then), and the outcome remains tentative until you actually hold a living breathing human being in your arms. We didn't talk about it much beforehand, but I know I at least (and I am sure SisJames too) were well aware of those we knew or had met who had not had that straightforward outcome - for al sorts of reasons. They were the exception - we knew many more who had had perfectly normal deliveries - but you can't help wondering 'What if that happened to us?'

Posted by bessie rosebride (# 1738) on :

The unfortunate thing to me is that the children or potential children in question never get to state their preference. To be born or not to be born - that is the question.

Of course, God has never made that an option for any of us; those with good outcomes or bad. Perhaps that's an indication that we as adults shouldn't have that power over the unborn of questionable quality either.

Just my opinion and not needing to have my hooves shod. [Biased]

Posted by FCB (# 1495) on :

Though I hold to the official heartless Catholic line on abortion (i.e. I'm against it), I would still distinguish between something like anacephaly and Down Syndrome, in that one could plausibly argue that one in aborting an anacephalic fetus one was only marginally shortening its life and that they primarly intention was to prevent its suffering. I can't imagine making the same argument for a fetus with Down Syndrome. The people I have known with Down Syndrome have been, in their own distinctive ways, lovely people, and the only suffering they experience from their condition is the suffering that others inflict on them. I wouldn't pretend that raising a child with Down Syndrome is a cakewalk, but, as others have pointed out, there are all sorts of things that happen after the birth of a child that make parenting difficult.

I suppose my only point in all this is that "eugenic abortion" is an indicator of something ugly about the human race -- something that we are called as Christians to resist in some way.

Posted by Choirboy (# 9659) on :

quote:
Originally posted by Lamb Chopped:

quote:

Go ahead and get the tests done if you want, but don't kid yourself about losing your worries, since you will simply and surely replace the fear of Down's, etc. with the fear of cleft palate, ears like Uncle George's, etc. that are not testable. Pregnancy is the beginning of a slippery slope of worry you will careen down all the rest of your life.
Maybe an overstatement, but there's some truth in it!

It is a slight overstatement, but the point is very sound. Especially regarding this question of the "tentativeness" of bonding with the fetus at early stages. The status of the amnio is just one of a million things to worry about, and I think the author of the book may be overemphasizing this particular stage of development in terms of its lasting effects on the parent-child relationship.

I think as people of faith, or even as a bipartisan coaltion of the left and the right, we could advocate better standards for genetic counselling, including forming a personal risk tolerance profile prior to obtaining the screening test or an amnio. This at least would have the result of reducing the number of miscarriages due to the amnio among healthy fetuses, and may well reduce the number of abortions of those with positive results.

[fixed code]

[ 02. August 2005, 20:19: Message edited by: Choirboy ]

Posted by nicolemrw (# 28) on :

when you think about it, though... did women in the past "bond" with theit unborn (fetus or baby, your preference) anyway? when infant mortality rates were so high, there was no guarentee that just because a child was born it would live to any viable age. i've heard it suggested that parents didn't really bond with young children because the pain of losing them over and over and over again would just be to high.

Posted by Choirboy (# 9659) on :

The big mistake is naming them. You really get attached once they have a name. [Biased]

Seriously though, does anyone have concrete knowledge on this or is it just urban myth. I've heard that in the middle ages, one didn't get attached to children under the age of 5 because of the mortality. I am quite prepare to believe otherwise if people have any good historical sources .

Posted by RuthW (# 13) on :

I have no idea what people did in the middle ages, but it's hard to imagine that adults could live with small children without becoming attached to them. I don't even particularly like small children as a class of people, but I see my best friend's little two-year-old girl every week*, and that's been enough to make me very attached to her.

*I see my best friend as well, but let's face it, when the kid is at that very cute stage, everyone else is just entourage. [Big Grin]

Posted by Laura (# 10) on :

I've read historians contend that people in the Middle Ages and at other times that children were likely to die of assorted diseases didn't get attached to them, but I tend to think that what small evidence we have suggest that's ridiculous. I think they did love them and suffered terribly, but didn't complain in 200 page books about their grief the way a modern person might, so we don't have any lasting record.

FCB, that OPEd may not have been unbiased but it provided some fairly scary stuff from mainstream sources. I think it's fair to say that this eugenic abortion movement is going forward with very little public debate and you better believe it's discussed in the "disabled community," who have not failed to notice that certain disabilities are basically being eliminated from the population through selective abortion.

For example:

quote:
Now prenatal screening can identify hundreds of conditions. This has made it possible for doctors to abort children not only with chronic disabilities but common disabilities and minor ones. Among the aborted are children screened for deafness, blindness, dwarfism, cleft palates and defective limbs.

I can testify from personal and family experience that these enumerated things are either reparable or have very little effect on the ability to live a life of joy and love. I'm not sure where my "line" is, these problems are well below my threshhold.

quote:
As Andrew Imparato of the [American Association of Persons with Disabilities] wonders how progressives got to this point. The new eugenics aimed at the disabled unborn tell the disabled who are alive that "disability is a fate worse than death," he says.

"What kind of message does this send to people living with spina bifida and other disabilities? It is not a progressive value to think that a disabled person is better off dead."

God this is hard stuff.

[ 02. August 2005, 21:35: Message edited by: Laura ]

Posted by nicolemrw (# 28) on :

its hard to believe, for me at least, that a woman could go through a pregnancy without becomeing attached to what shes carrying, but thats what this thread is about. theres another thing, btw, it sounds at least as though people are assuming that women are having abortions lightly, like "oh well this one didn't work, lets just end it, its not like i got attached to it or anything.". i don't think thats ever the case. even when thats the choice thats made, everything i've ever heard about it has indicated that its a pretty wrenching decision.

Posted by Rat (# 3373) on :

quote:
Originally posted by Laura:
I've read historians contend that people in the Middle Ages and at other times that children were likely to die of assorted diseases didn't get attached to them, but I tend to think that what small evidence we have suggest that's ridiculous.

I've read other historians agreeing with you and completely trashing that idea, which I think does approach urban myth.

There is a fair amount of documentary evidence (letters, etc) suggesting that people in the middle ages felt much the same about their young children as we do.

Posted by tclune (# 7959) on :

quote:
Originally posted by Laura:
As Andrew Imparato of the [American Association of Persons with Disabilities] wonders how progressives got to this point. The new eugenics aimed at the disabled unborn tell the disabled who are alive that "disability is a fate worse than death," he says.

"What kind of message does this send to people living with spina bifida and other disabilities? It is not a progressive value to think that a disabled person is better off dead."

I guess it's my lot to be the curmudgeon here. The idea that a couple should continue with a pregnancy that they find intolerable to avoid sending the wrong message to any group is just silly. So much of the abortion discussion acts as if there is only one person involved -- the only one that is not obviously a person at all. When a couple come to the decision to have an abortion, it is made from a context that is not available to anyone else. It is far from clear that this is an easy and simple choice for most. It is also far from clear to me that it is an abomination to the Lord.There is no shortage of life to value endlessly. Let's start by valuing the lives of the couple.

--Tom Clune

Posted by birdie (# 2173) on :

quote:
Originally posted by Laura:
But then, maybe, if one has no tolerance for defects, perhaps one oughtn't to be in the business of having children at all. There's no guarantee after all, that your apparently normal child won't develop autism or something far worse than a mild case of Down's syndrome.

I think this is pretty much where I stand on this. Some here will know that I have a baby son who has Spina Bifida. This was diagnosed ante-natally through an ultrasound scan - so not an invasive test procedure. Without venturing into Dead Horse territory, my husband and I were profoundly grateful throughout the pregnancy that we already knew where we stood should we find that our baby had some sort of disability. If we were not prepared to face the possibility of bringing up a disabled child, we would not have started a family. I hope that doesn't come across as a twee, Hallmark-type sentiment - I'm not saying that it isn't hard, and that it doesn't terrify the living daylights out of me on occasion!

On the whole testing/screening issue, I think that the failure of most people to understand statistics and expressions of risk as a percentage, for example, is very important here. I don't know how it works for women over 35 here, but for me (aged 28 when I got pregnant), I was offered blood tests which were described as 'screening', and which would give a percentage risk for conditions such as Down's Syndrome. If your risk came out as higher than a certain point, you would be offered amnio. (We were told this carried a 1 in 100 chance of miscarriage - different numbers to Laura's example).

I am sure that most people who have a higher than average risk indicated from the screening then go on to have amnio, although from what I could see (I'll see if I can dig out the leaflets) the risks were still pretty small - I am fairly sure smaller than the risk of miscarriage. I didn't have the screening done, as I would not have had amnio even if the screening had indicated a high risk, because of the risk of miscarriage, and didn't see the point of worrying myself over a screening result.

We were offered amnio again after finding out about Evan's Spina Bifida, as there can be chromosome defects associated with it. Again, we declined this.

Something else that worries me about this whole area (especially having been 'in the system' with an ante-natal diagnosis of disability), is that it seems to me people think that they can get far more definitive information about their child than is actually the case. In many cases, although a diagnosis is made, there is no way of knowing how that diagnosis is actually going to affect the child once they are born. My son is 7 months old now, and so far his development has been no different to any other child. We don't know what the future holds, but what parent does?

The board with the lights shown in the link Josephine posted, and Laura quoted, is one of the most chilling things I think I have ever read. It does worry me very much that we may get to a point where there is pressure from society on parents to terminate pregnancies when abnormalities/disabilities are detected. You do come across that attitude but thankfully, in my experience at least, this is rare. One friend of mine, when she informed her midwife she didn't wish to have screening for Down's was asked "do you realise how much disabled children cost the NHS?", but no-one ever said anything like that to us. A good thing, because I don't think I could have been held responsible for my actions....

This has been long and rambly, and any point I may have had appears to be buried, but, having been there, I thought I'd post. [Smile]

If my thoughts clarify at all overnight, I'll post again!

b

[cross-posted with a ton of people]

[ 02. August 2005, 22:28: Message edited by: birdie ]

Posted by tclune (# 7959) on :

quote:
Originally posted by birdie:
...If we were not prepared to face the possibility of bringing up a disabled child, we would not have started a family. I hope that doesn't come across as a twee, Hallmark-type sentiment - I'm not saying that it isn't hard, and that it doesn't terrify the living daylights out of me on occasion!

Your decision is clearly moral and laudatory. My posts are not at all intended to suggest otherwise. My only point is that I have no right making such a difficult decision for you. Nor do I have the right or desire to judge anyone faced with a similar choice for whatever they decide is right for them. I believe that the Christian thing that I am called to do is offer my support in helping the couple deal with whatever decision they deem best.

What raises my hackles is when people act as though raising a family is an unalloyed joy and blessing, and our part is to get with the divine program. At best, raising a family is a very alloyed joy and blessing.

--Tom Clune

Posted by HopPik (# 8510) on :

Not read all this thread, so apologies if any of this has been covered. We had our two kids latesish so had amniocentesis, but by the second time were thinking, as it happened, why are we doing this? Because with one kid in the nest, aborting another just because was downs suddenly seemed inconceivable. Never mind the fact that when the needle went into our firstborn's amniotic sac I'd seen her flinch, and she was born with a snick out of her ear like somone nicked it with a holepunch.

Second thing for me was, years later, working with adult disabled students, mostly suffering from cerebral palsy, dyspraxia, autism and the like. In the main these guys were so happy! Their lives were good, they were having fun. I remember one student in particular, a woman in her twenties with cerebral palsy, couldn't move without an electric wheelchair, could barely co-ordinate to push a button to do anything, spoke at the rate of one syllable maybe every three seconds if that... but her name was Joy and I never met anyone with a more appropriate name, that woman was so exuberant, she had wit and intelligence, was an inspiration to anyone who knew her. And yet with different parents, or different advice, she might have been flushed down a sink. What a thought.

Posted by RuthW (# 13) on :

quote:
Originally posted by HopPik:
And yet with different parents, or different advice, she might have been flushed down a sink.

With different parents she might have been parked in a "home." Or shaken till her brain was bruised from bouncing against her skull. Or beaten to within an inch of her life. I'm glad Joy's life is so good. But many severely disabled people's lives are not so good, and the "they're always so happy" thing makes me want to puke. The one young woman with Down Syndrome with whom I am acquainted is not happy all the time, and she is quite aware of the limitations of her life. She sees her younger brother growing much taller--all her family are extremely tall, but her growth has been stunted--she knows her gait is more awkward than other people's, she knows she won't go to college but her brother will. She lives with her parents while her contemporaries leave home and make their way in the world. She knows her life is different from other people's, and though her parents have done a fabulous job of helping her to love and accept herself, I get the impression that if given the choice, she'd rather be like other people.

Some years ago I had a student in his early 20s who had CP; he was extremely bright and very funny, and with his inquisitive and insightful mind he was a positive delight to teach. But he wasn't happy all the time, and he was anything but joyous. Some things were very painful for him, I think. For instance, young women weren't rude or cruel to him, but they just didn't see him as a sexual being because he walked very awkwardly, held his hands at odd angles, and spoke with difficulty. The evils of eugenic abortion are getting discussed here at length, but this guy's genes were going to have a hard time getting passed on if he never met someone to whom the effects of CP were unimportant. (And I pray he did--if I'd been ten years younger and not his professor, I'd have asked him out myself.)

None of this is to say that some people are just better off dead. But we've had two posts already about how great severely disabled people's lives can be, and while they can be great, I think it's dishonest and mean to talk as if it's all sunbeams and daisies to live with severe disabilities.

Posted by sharkshooter (# 1589) on :

quote:
Originally posted by tclune:
....There is no shortage of life to value endlessly. Let's start by valuing the lives of the couple.

So, we pick and choose what lives to value? I thought the Christian answer was that all human life had value; none more so than any other. At least, that is what I believe.

God grants us life. Who are we to decide that He made a mistake?

Posted by tclune (# 7959) on :

quote:
Originally posted by sharkshooter:
So, we pick and choose what lives to value? I thought the Christian answer was that all human life had value; none more so than any other. At least, that is what I believe.

But saying this is deciding which life to value above the others. When a couple is faced with the question of whether to raise a severely handicapped child or not, they are making a decision that will determine the course of all lives involved. Pretending otherwise is just dishonest.

Some people may be able to find value and fulfillment in a life devoted to caring for a severely disabled child. They may have personal circumstances that allow them to plan for the child's well-being after they themselves are too old to do so. Such people are to be commended.

But those who do not find themselves in a similar circumstance are not to be condemned, which is exactly the invasive and unloving judgement that the church places upon such people with the casual disregard that one associates with Pharisees.

quote:
God grants us life. Who are we to decide that He made a mistake?

Were God the only one who was carrying the fetus to term and devoting His existence to the child's care and feeding after the birth, I would find this point valid. As it is, it just strikes me a callous.

--Tom Clune

Posted by josephine (# 3899) on :

quote:
Originally posted by RuthW:
She knows her life is different from other people's, and though her parents have done a fabulous job of helping her to love and accept herself, I get the impression that if given the choice, she'd rather be like other people.

With a few exceptions (in particular, some Deaf and some people with autism spectrum disorders), I think most people with disabilities would choose not to be disabled if that choice were available. But the choice offered by eugenic abortion is not "disabled or normal," it's "disabled or dead."

quote:
But we've had two posts already about how great severely disabled people's lives can be, and while they can be great, I think it's dishonest and mean to talk as if it's all sunbeams and daisies to live with severe disabilities.

There is a bit of glurge well known among parents of children with disabilities, called Welcome to Holland. Some parents with special needs children find they relate more to Welcome to Beirut or Holland Schmolland. The Holland metaphor, as this article makes clear, forces parents to deny their feelings of anger, guilt, frustration, and pain. To pretend that it's all sunbeams and daisies.

And as you say, RuthW, it isn't. Littlest One is mildly to moderately disabled, and along with his disabilities, he has astonishing gifts. And even with him, there are days life feels a lot more like Schmolland or Beirut than Holland.

So, yeah, we shouldn't pretend that all people with disabilities have joy-filled lives, that they are happy, well-adjusted, and at peace with themselves and the world. None of that may be true.

But neither is it true that they'd be better off if they'd never been born.

Posted by josephine (# 3899) on :

quote:
Originally posted by tclune:
When a couple is faced with the question of whether to raise a severely handicapped child or not, they are making a decision that will determine the course of all lives involved. Pretending otherwise is just dishonest.

Unfortunately, eugenic abortion is not just about severe disabilities. It is also about cleft palates and dwarfism and hereditary Deafness.

quote:
But those who do not find themselves in a similar circumstance are not to be condemned, which is exactly the invasive and unloving judgement that the church places upon such people with the casual disregard that one associates with Pharisees.

Are you suggesting that the only choice, if someone thinks that caring for a disabled child would be more than they can bear, is to kill the child, and then comfort them while they mourn the death, reassuring them that they can always try again, and maybe next time the child won't be defective?

I don't think that's much of a choice, frankly. I think it's horrific.

If the parents don't have the resources to care for the child, then we, as a society, damned well ought to help them care for the child. If they need respite care, we ought to provide respite. If they need medical insurance, or counseling, or home health aides, they ought to have it.

Because killing children whom we happen to find inconvenient is monstrous.

Posted by Lamb Chopped (# 5528) on :

I think one of the problems with amnio is the same problem we have with all new knowledge--you can make either a good or a bad use of it, and so the new info always opens up new realms of possible good and evil. (Pls note I'm not here designating what is evil!)

I don't think I could wish that amnio had never been invented--we used it (at eight months) to determine whether my son's lungs were developed enough for him to be delivered safely. But it creates more opportunities for moral dilemmas. AS does practically every other new thing.

Posted by Lamb Chopped (# 5528) on :

In reply to Josephine's latest, I'd like to add that as far as I recall, nobody here is condemning the parents who make the decision; they are simply judging that the situation itself is an evil, and the decision a bad one, though perhaps the only one the parents thought they could make.

I can see how certain parents, pushed against their limits, might opt for eugenic abortion, seeing no other choice open to them. They know they could not raise such a child alone, and they know that if the child is born, they will certainly be raising it "alone," because the necessary social support systems simply aren't there or aren't adequate. So they opt for eugenic abortion.

I would certainly not call such parents monsters or refuse to have dinner with them. But this kind of desperate situation ought not be allowed to exist in the first place. Which puts us right back to improving human care programs, and learning to love one another.

Posted by FCB (# 1495) on :

quote:
Originally posted by tclune:
Some people may be able to find value and fulfillment in a life devoted to caring for a severely disabled child. They may have personal circumstances that allow them to plan for the child's well-being after they themselves are too old to do so. Such people are to be commended.

But those who do not find themselves in a similar circumstance are not to be condemned, which is exactly the invasive and unloving judgement that the church places upon such people with the casual disregard that one associates with Pharisees.

I think a corollary to Godwin's law that any Christian who invokes the Pharisees loses the argument.

But the real question is why we should extend this non-judgemental support only to parents whose children's disabilities are diagnosed prenatally? Isn't a child who is diagnosed with a disability 6 months after birth just as much of a burden to parents as one that is diagnosed 6 months prior to birth?

I don't think we need to make being disabled sound like a constant joy in order to criticize the practice of aborting fetuses for the sole reason of their being disabled. Would we hesitate to criticize parents who aborted their children for the sole reason of their being female (which in many cultures is as sure a gaurentee of a miserable life as any disability)?

FCB

Posted by Laura (# 10) on :

tclune:

Is it your contention that the lives of the couple are endangered by raising a disabled child? Or that to suggest that aborting for defect equals valuing the couple? I'm confused. Or is it your contention that the life of the couple ought not to be disrupted by having to raise a child with a severe defect? (This latter is certainly a position widely held, but I want to be clear on what your contention is).

Posted by Laura (# 10) on :

I guess the point isn't whether amniocentesis is bad (as Lamb chopped points out, it very much has its uses) -- I know at least two couples who had it simply to be informed about any disabilities their child might have. One of them has a six year old with Down's syndrome, so they weren't just blowing sunshine.

It's more the amnio plus assumption of abortion if defect that seems skewed in terms of the way the medical options are presented. If through amnio, I should find out that I was expecting a child with something like herditary deafness, I wouldn't consider termination for two seconds, but would go about finding out about supporting deaf children and what the best early enrichment is for deaf children etcetera. I'm not sure what I would be "informed" about my options, though I'd be very interested in what the standard advice is. Is abortion offered readily for minor defects? Or do people just choose it?

Posted by josephine (# 3899) on :

quote:
Originally posted by Lamb Chopped:
I would certainly not call such parents monsters or refuse to have dinner with them. But this kind of desperate situation ought not be allowed to exist in the first place.

To be clear, I was not calling the parents monsters. The situation is monstrous. And the suggestion that condemning the situation is invasive, unloving, judgmental, and Pharisaical is also monstrous.

quote:
Which puts us right back to improving human care programs, and learning to love one another.

Exactly.

Posted by tessaB (# 8533) on :

I really don't think that there is a completely right or wrong answer here. I do know that I thank God that autism is not able to be screened for ante-natally so I was never put in this position with my two boys.
A friend had amnio with her second child with the absolute stated intention of aborting if there was any damage. This seems horrifying at first until you know that she was already caring for a five year old daughter with Angelmans Syndrome. She knew her limitations (and I have to say that they are a lot higher than mine) and knew that there was no way she could cope.
Incidentally there does seem to be a disproportianatly high number of single mums in my boys' school. Does anyone know what the divorce rate is among parents of disabled children? Is it higher than average because it seems to be.

Posted by Lamb Chopped (# 5528) on :

Uh--Josephine, I was agreeing totally with you--or trying to, anyway. [Ultra confused]

Posted by josephine (# 3899) on :

quote:
Originally posted by Lamb Chopped:
Uh--Josephine, I was agreeing totally with you--or trying to, anyway.

Oh. My bad. Sorry. [Hot and Hormonal]

Posted by Presleyterian (# 1915) on :

quote:
Laura wrote to tclune:

Is it your contention that the lives of the couple are endangered by raising a disabled child? Or that to suggest that aborting for defect equals valuing the couple? I'm confused. Or is it your contention that the life of the couple ought not to be disrupted by having to raise a child with a severe defect? (This latter is certainly a position widely held, but I want to be clear on what your contention is).

I can't speak for tclune, but his or her posts demonstrate for me why these tremendously difficult and heart-rending decisions are best left in the hands of parents, rather than legislators. If I may, I have a question for those who have spoken so very, very eloquently against "eugenic abortion." Some of you may well be against legal abortion in any circumstance, but for those of you who aren't, do you view an abortion motivated by the in utero diagnosis of serious disabilities to be "worse" -- more troubling morally, less justifiable legally, etc. -- than an abortion undertaken for other reasons?

Posted by Presleyterian (# 1915) on :

I should add that I'm asking the question because -- at least from the short Amazon excerpt of the book Laura cited in her OP -- the author appears to suggest that an abortion by a woman who doesn't wish to be pregnant and whose contraception failed is somehow different from an abortion when a couple desperately wants a baby, and yet terminates the pregnancy after finding that the child is severly disabled. And by "different," I'm sensing that the author finds the latter category substantially more troubling -- which came as a surprise to me.

[ 03. August 2005, 02:49: Message edited by: Presleyterian ]

Posted by Foolhearty (# 6196) on :

Part of the issue here, I think, is not just that we have a technology that can predict some disabilities, plus the usual ethical lag. (First we learn how to do something, then we begin the debate over whether we should.)

The issue has two other dimensions we may not be taking into account, I think.

Part of the problem is that ordinary human existence, at least as lived in the so-called "developed world," has become so complex that even people just a little below average in mental acuity may need support in managing. I've had some experience trying to help so-called "borderline" folks learn how to cope with credit, bus schedules, and checking accounts, or even, Heaven help us, their phone or utility bills.

People in this "borderline" range may have fared better in a simpler, agrarian society. They'd have been made occasional fun of, taken advantage of, just as they sometimes are now -- but they'd have been able (if not physically handicapped) at least to scratch out a living and to contend with most of what was required of them.

That's less and less possible. Good grief, I have a graduate degree and I can hardly understand my electric bill. And don't get me started on cell phone contracts.

This, I suspect, leads to the second part of the issue: our societal definition of "normal" seems to be shrinking, including a narrower and narrower range of appearance, behavior, and intellectual functioning.

A chicken-and-egg question, perhaps. But is the "eugenic" sort of abortion simply a natural, if frightening, response to the recognition that the world we live in seems to require ever-more exacting mental abilities and ever more-exacting standards of appearance and functioning?

If it weren't bedtime, I'd drag out my OED and look up "normal" to see its history.

I rather suspect that a good many people regarded as "disabled" today were taken for granted as "just more folks" in 1305.

Posted by josephine (# 3899) on :

quote:
Originally posted by Presleyterian:
Some of you may well be against legal abortion in any circumstance, but for those of you who aren't, do you view an abortion motivated by the in utero diagnosis of serious disabilities to be "worse" -- more troubling morally, less justifiable legally, etc. -- than an abortion undertaken for other reasons?

Yes, I do think that eugenic abortions are worse than other abortions, because I think that eugenics is an unmitigated evil. How can we say that a child with spina bifida, or a cleft palate, or an autism spectrum disorder, would be better off never having been born? And what happens when we start extending that notion? It's a slippery slope we've skidded down before, and the result was the Holocaust.

Part of remembering the Holocaust is remembering how we got there. In large part, we got there through the eugenics movement. As a society, we decided that some people were burdens to society, and that we should have fewer of such people. As we accepted more and more the dehumanization of the "feebleminded," we began to see others as less than human as well, and we went from thinking that we should encourage marriages between "the best and the best" to thinking that we should eliminate the unfit from the gene pool.

And that's what we're doing with eugenic abortion. This online archive provides plenty of history. There's more out there where this came from.

Eugenics is ugly. It's evil. It's wrong. To think of it as a compassionate service for parents is like dipping rat poison in chocolate. It might be more palatable that way, but it's still poison.

Posted by birdie (# 2173) on :

quote:
Originally posted by Laura:
I'm not sure what I would be "informed" about my options, though I'd be very interested in what the standard advice is. Is abortion offered readily for minor defects? Or do people just choose it?

Well, this is what happened to us: I was having my routine 20 week scan when the sonographer suddenly started talking in a very soft voice, and calling me 'lovey' a lot, so we knew something was wrong! She told us that she was 'not happy' with what she could see in the brain and the spine, and that she was going to get us seen by a consultant.

We were then seen by the consultant and a midwife. The consultant went through the implications of what had been seen on the scan, as far as he could, as this was obviously early days. After talking about the implications for the baby, we were asked if we wanted to talk about termination. We said no and it was not mentioned again. We were referred on for further scans.

I don't know, of course, what would have happened next had we wanted to consider termination, but I was very impressed with the support we got once they knew that there was no question about our intentions.

b

[pesky punctuation]

[ 03. August 2005, 07:53: Message edited by: birdie ]

Posted by Petaflop (# 9804) on :

Can I just thank everyone who has posted so thoughfully on this difficult thread? I don't have anything to contribute, but as late 30's and just married, it is giving me a lot to think about.

Posted by Cedd (# 8436) on :

My wife and I lost our first child due to an early, natural, miscarriage.

When we conceived again we were in our mid-30s and were offered an amnio. We said "no" as we had no intention of aborting the baby in any circumstances and did not wish to risk another miscarriage, however small the risk. The reaction of the hospital staff was evenly split between total disbelief at our stance by some and apparent respect by others. I certainly got the impression that very few people refused the test.

This does not further the debate but is merely my experience.

PS - We have a healthy daughter and my wife is now pregnant again - we will take the same decision for the same reasons.

Posted by Foolhearty (# 6196) on :

You know, I'm remembering now that I was "offered" amnio when pregnant with my now-over-18 daughter.

It was presented to me as SOP for "older" mothers (I was in my late 20s at the time). No risks to the child I was carrying were mentioned.

I do think it should be pointed out clearly to expectant parents that, if they're commited to dealing with whatever situation presents at delivery, they can refuse the test.

Posted by tclune (# 7959) on :

quote:
Originally posted by Laura:
tclune:

Is it your contention that the lives of the couple are endangered by raising a disabled child? Or that to suggest that aborting for defect equals valuing the couple? I'm confused. Or is it your contention that the life of the couple ought not to be disrupted by having to raise a child with a severe defect? (This latter is certainly a position widely held, but I want to be clear on what your contention is).

My contention is that my Christian duty is to offer loving support to those who are in the situation of having to make such a difficult decision, whatever their decision is. The suggestion that no-one here is judging them simply does not appear to be supportable if people just read the posts. I am not arguing that anyone should choose to abort, any more than I'm arguing that they should choose to carry to term. It's just not my decision to make, and I'm not going to second-guess the decision made by another couple. The view that Christian love consists of brow-beating others into the choice that you fantasize you would make in their shoes just doesn't track with the scripture I read.

--Tom Clune

Posted by Presleyterian (# 1915) on :

quote:
Josephine wrote: Eugenics is ugly. It's evil. It's wrong. To think of it as a compassionate service for parents is like dipping rat poison in chocolate. It might be more palatable that way, but it's still poison.

Thank you, Josephine. I appreciate your taking the time to answer my question.

Then what about what some might call "eugenic contraception"? Is it similarly evil for couples to forego having children biologically after they learn, for example, that they both carry a gene that will make it very likely that any child they have will be severely disabled? What about parents who have one child with a genetically-linked condition who then decide on sterilization for themselves rather than risking a second child with a severe medical condition? Is that the practice of eugenics? Or it is only when abortion is involved that it becomes an evil act?

Posted by Laura (# 10) on :

Presleyterian:

In response to your earlier, I think (with J) that abortion for no reason isn't targeting any particular class -- it may be moral or immoral (and whether it is or not is discussed elsewhere) but abortion for defect is specifically done by people who want a child badly, but not a damaged one. So it's explicitly eugenic (whatever one may think of that vis-a-vis society).

I think the decision not to breed falls into a different class. It's as eugenic in effect, I suppose, but requires an advance decision not to bring a life into being. There's no way of knowing whether that couple would ever have been able to bear their own children, because they chose not to try. To act instead during pregnancy means that, at least, a life is in being. Which seems like a qualitatively different situation.

tclune: There's no way to discuss the morality of a decision without making judgments. This is a debate board. If we took the approach that we must never appear to speak judgmentally of anyone who chooses one way or another, in order to be supportive, many of our most vibrant debates would wither away. Part of my concern with this particular debate is that it appears not to have been a public discussion at all, but developed into a quiet "normal" way of operating with neither a bang, nor a whimper. I have been struck as a pregnant woman, now of "advanced maternal age" of the seamless way in which all of these "options" are offered to me. It makes me wonder about a lot of things.

For me, I do not criticize those who made the difficult decision to abort a child with severe disabilities. Nor do I think (nor is anyone suggesting) that this is something that needs to be made illegal. It is and I think shall remain a matter for the couple and the doctors and their spiritual advisors.

I do think that the decision to terminate a child for any disability however small is misguided and wrong.

Posted by HopPik (# 8510) on :

quote:
Originally posted by RuthW:
the "they're always so happy" thing makes me want to puke.

I didn't say always. Try comforting a woman nearly fifty with a mental age in single figures, who has just realised that her mother is going to die. However long her parents lived, for her losing them was going to be like a child being orphaned.

However after several years in that job I'd seen nothing to suggest that the lives of my students were any less happy, or within their own horizons less fulfilled, than in the "normal" run of people. Life can be a pig for anyone.

I'm not an anti-abortionist (hate the term "pro-life", which of us isn't?). There are many good reasons why a healthy woman carrying a child might want a termination - including feeling unable to cope with a disabled man-child or woman-child for decades. I'm just glad the parents of my students hadn't gone that way.

Posted by chukovsky (# 116) on :

quote:
Originally posted by Foolhearty:
People in this "borderline" range may have fared better in a simpler, agrarian society. They'd have been made occasional fun of, taken advantage of, just as they sometimes are now -- but they'd have been able (if not physically handicapped) at least to scratch out a living and to contend with most of what was required of them.

Anyone who is under any illusion that it is somehow "easier" in more traditional societies should have watched African School on BBC4. I have been involved in a project looking at children with all kinds of disabilities in a similar setting, trying to work out how to diagnose disabilities accurately, persuade parents their children are educable, and find school places for them, and the story they showed of the fate of children with special needs in that setting is all too common.

Here is an interview with the special needs teacher of the primary school they are featuring.

Posted by sewanee_angel (# 2908) on :

I found this article interesting.

At Amazon, you can read the first couple of pages.

Posted by RuthW (# 13) on :

quote:
Originally posted by HopPik:

quote:
Originally posted by RuthW:
the "they're always so happy" thing makes me want to puke.
I didn't say always.

I'd have appended your name to the quotation if I had been quoting you. I don't know about you, but I've heard the line "they're always so happy" more times than I can remember. I'm know now that you and I agree (and doubtlessly many others on this thread) that this is not the case.

Posted by josephine (# 3899) on :

quote:
Originally posted by Laura:
I think the decision not to breed falls into a different class. It's as eugenic in effect, I suppose, but requires an advance decision not to bring a life into being.

I see a difference, too, between choosing not to have children and choosing not to have this child. A woman who is a presumed carrier for hemophilia may choose not to have children, or she may choose to have children and abort if the child is male. I see the former as a perfectly appropriate response to the situation, and the latter as being as wrong as it can be.

There may be some problem in the logic here. It may not be entirely consistent. I'll have to think about it a while.

Many years ago, before amnio and eugenic abortion were routine, my aunt (a physician) said that she didn't see why any doctors would go into obstetrics any longer, because all parents had begun to demand perfect children, and if the children were less than perfect, they looked around for someone to blame -- usually the doctor. She said that we seemed to have lost the knowledge that a certain number of children are not perfect, and that such imperfection is just a normal part of the human condition. She thought the problem came from smaller families -- if a parent had six or eight kids, and one or two of them were imperfect, they still had the other kids that could fulfill their dreams, that could be a doctor, or marry and give them grandchildren, or whatever it was they wanted for their children. But if they only have one or two children, then they need those children to be perfect, or they have no hope of their dreams being fulfilled.

Is that all our children are to us? Do we have such an overwhelming need for them to be what we want them to be -- beautiful and intelligent and charming and successful, that if they may fail in one of these areas, if they may have a club foot or a cleft palate or Down Syndrome, we'd rather not have them at all?

Or does something else drive it?

I don't know. But I think the fact that we abort 90% of the fetuses diagnosed with Down syndrome, and a significant number of those with even less serious disorders, says something ugly about us. I'm not sure what, though.

Posted by sewanee_angel (# 2908) on :

[Hot and Hormonal]

I posted too quickly. The book you can preview at Amazon is Testing Women, Testing the Fetus and is one of several discussed in the article by Dr. Hall that I also posted. [Hot and Hormonal]

Posted by nicolemrw (# 28) on :

quote:
I see a difference, too, between choosing not to have children and choosing not to have this child. A woman who is a presumed carrier for hemophilia may choose not to have children, or she may choose to have children and abort if the child is male. I see the former as a perfectly appropriate response to the situation, and the latter as being as wrong as it can be.

and i see that attitude as horrible. i'm not even sure i can put into words why it seems so sickening, but it makes me want to puke. its like saying to a woman who knows that she carries something dangerous and nasty in her genes "you can have children, but only if you risk having a child with this condition that _i_ don't have to worry about my children having because i'm not a carrier".

[ 03. August 2005, 16:47: Message edited by: nicolemrw ]

Posted by Laura (# 10) on :

sewannee angel: thank you for that Christian Century article -- it was extremely thought provoking. The connection between Christian hospitality and what its ramifications are for those who accept or reject a disabled child resonated. Also the observations about the inevitable effect of the selective elimination of people who don't fit out modern, high-speed, organized lives on the ongoing decrease in societal and personal tolerance for such differences were fascinating. Damn. Now I have to get more books to read.

Posted by RuthW (# 13) on :

I think we need to find a word other than "eugenic" to describe this sort of abortion. Eugenics is controlled selective breeding and implies a systematic approach. What we're talking about are lots and lots of individual decisions, and despite the fact that we can see trends, there isn't enough control by some authority for this to be eugenics, and it's certainly not selective breeding. People are still as far as I know choosing their mates themselves for a variety of conscious and unconscious reasons, some of which have nothing to do with their breeding quality. They're not being bred.

Posted by nicolemrw (# 28) on :

after taking a moment or two to reflect, i think what cheeses me off most about the passage i'm commenting on above is the fact that it does specifically refer to a disease that only certain people are at risk of passing on, people who are carriers. if it were something like downs syndrome, where it can show up in anyones offspring, then i might not find it so upsetting. but to tell someone who knows they carry something unpleasant in their genes that they _must_ take the risk of passing it along if they wish to have children just seems so totally dreadfully _wrong_.

Posted by chukovsky (# 116) on :

quote:
Originally posted by nicolemrw:
and i see that attitude as horrible. i'm not even sure i can put into words why it seems so sickening, but it makes me want to puke. its like saying to a woman who knows that she carries something dangerous and nasty in her genes "you can have children, but only if you risk having a child with this condition that _i_ don't have to worry about my children having because i'm not a carrier".

As I understand it, everyone carries a few genes for a genetic disorder, but most don't know about it because they don't have anyone in their family who's actually got the disorder. So it's all of our problem. Everyone is risking having children with a disorder, in some cases which isn't going to show up at birth, every time they decide they want to get pregnant.

Posted by Esmeralda (# 582) on :

I do think the whole argument changes when fertility is not taken for granted.

I got pregnant with my only child at 40, after some years of 'trying', and in a very miraculous way (well, sex was involved, but so was prayer for healing the family tree, and the connection of the conception to the prayer was very obvious, given the timing).

I refused amnio as, given this baby's 'miraculous' conception, there was no way I would terminate. I am not at all emotionally strong, I suffer from chronic depression, but I was convinced that God had given us this child.

As it turned out (though this wasn't confirmed till he was 7), our son does have a social learning difficulty, possibly autistic spectrum - though this would not have been shown by amnio. There are many moments when we fail to cope with his disorder, and the lack of an extended family is one of the factors making it harder. Of course, the lack of relatives is a direct result of Hitler's eugenics... (my parents were refugees from Austria).

Given all this, there is still absolutely no way I'd send our son back, or wish we'd aborted him. Were his disability more severe, I might have different feelings - but then we'd also get more support and educational help.

The midwife who said 'Do you know how much disabled children cost the NHS?' ought to be shot. And I say that as a pacifist. [Biased]

Did she know how much smokers cost the NHS? Or careless drivers? Or people who consume too much fat? Should they all be 'terminated' too?

If a couple, or lone parent, feels they seriously cannot cope with a disabled child (and my sympathies are with them), they should put the child up for adoption when born. Many infertile couples would die for a baby to adopt, even if disabled.

I must admit my views are influenced by having attended an NHS fertility clinic, after 18 months wait when I was already in my late 30s, and the first thing that happened was that they gave me a photocopied sheet saying that the fertility clinic had been reduced from two days a week to one day, in order to provide better abortion services. Why not cut out the middle woman, I thought, and let the women with unwanted pregnancies carry the babies to full term and give the babies to us infertile women? [Mad]

Posted by RuthW (# 13) on :

Everybody may run the risk of having a child to which they have imparted a genetic disorder, chukovsky, but some people carry the burden of knowing that there is a high likelihood that they will do so. There's a big difference between thinking there's an off chance you might have a kid with a problem and knowing that if you have a boy he will probably be a hemophiliac.

Posted by nicolemrw (# 28) on :

chuk, please look at my post again, it says quite clearly "a woman who knows...".

yeah, any of us could come up with something that we don't know is there. i'm talking about cases where theres no doubt.

Posted by chukovsky (# 116) on :

quote:
Originally posted by RuthW:
People are still as far as I know choosing their mates themselves for a variety of conscious and unconscious reasons, some of which have nothing to do with their breeding quality. They're not being bred.

A chat with a British Nigerian medical student I know suggests otherwise: sickle cell is so common in her ethnic group that a lot of people ask about someone's carrier status as soon as they get serious together, and may choose not to start a family if they are both carriers. A TV programme I saw a while ago suggested the same might be the case in formerly Mediterranean communities now settled in the US where a high incidence of thalassaemia (which is similar - two carriers may have an affected child).

It's hard, obviously, but as she said, when you've seen several of your schoolmates die, you don't know what to do.

Incidentally, I seem to sense a difference in attitudes to children who might have a learning disability, those who might have a physical disability, and those who might have a life-threatening illness. I'm not sure if this is just my perception, though, but I wonder if people (in general, rather than on the Ship) think it's more acceptable to terminate a pregnancy if the child has Down Syndrome (so if there's a test for autism they'd be the next to go), versus a child who has severe cleft palate (the parallel I'd guess would be cerebral palsy?) or one with cystic fibrosis (the parallel possibly being leukaemia?)

Posted by josephine (# 3899) on :

quote:
Originally posted by RuthW:
I think we need to find a word other than "eugenic" to describe this sort of abortion. Eugenics is controlled selective breeding and implies a systematic approach.

If you read the stuff on the American eugenics movement of the 20th century, it wasn't highly systematic. Not at first, anyway. Rather, people were encouraged to see the "feebleminded" as a burden on society, through the media, displays at fairs, and so on. And then the question naturally arises, why should we all support more and more feebleminded people? They aren't contributing members of society after all.

So they were sometimes sterilized without their consent, not by the government, but by their caretakers at the group homes and asylums where they were supposed to be cared for. Or they were used as subjects in medical experiments, again without consent. But it was considered completely justified, as it allowed them some means of contributing to the society that was supporting them.

And the circle was widened to include prisoners, and those with physical handicaps, and those from inferior races. It wasn't particularly systematic -- a variety of influential people and private organizations, opinion makers, textbook writers, even Christian ministers. It was just obvious to everyone that those who would be burdens on society, on the good people, the valuable people, should be gotten out of the way.

It was inconvenient to do so much of the time, because we didn't discover the inconvenience of feeblemindedness or physical deformity until after the person had already been born. The best we could do was isolate them, keep them out of sight, and prevent them from reproducing. But now we can figure it out in advance, and remove them before they have any opportunity to trouble us at all.

So we can do it earlier, with less cost, less trouble, less trauma to those of us whose lives are worthwhile. Not even any embarrassing questions to answer. It's clean and tidy. What more could a eugenecist want?

Posted by chukovsky (# 116) on :

quote:
Originally posted by nicolemrw:
chuk, please look at my post again, it says quite clearly "a woman who knows...".

yeah, any of us could come up with something that we don't know is there. i'm talking about cases where theres no doubt.

My point is that everyone should know that they have the potential for having a child with a genetic disorder. It's down to lack of education/information/people not wanting to think about it that people don't know. We should all know. We should all think about what we'd do in that situation, because every single one of us has the potential to be in that situation if we get pregnant.

So when a woman says it's wrong for a pregnant woman to make X decision if she finds out her child might be seriously ill, you can't say "well, it's fine for you to say that because you'll never be in her situation". If she gets pregnant, she could be, like anyone.

Posted by RuthW (# 13) on :

quote:
Originally posted by chukovsky:

quote:
Originally posted by RuthW:
People are still as far as I know choosing their mates themselves for a variety of conscious and unconscious reasons, some of which have nothing to do with their breeding quality. They're not being bred.
A chat with a British Nigerian medical student I know suggests otherwise: sickle cell is so common in her ethnic group that a lot of people ask about someone's carrier status as soon as they get serious together, and may choose not to start a family if they are both carriers. A TV programme I saw a while ago suggested the same might be the case in formerly Mediterranean communities now settled in the US where a high incidence of thalassaemia (which is similar - two carriers may have an affected child).

These people are not being bred. They are choosing their own mates and making their own decisions about having children. These are trends, not systematic things and not controlled. So this is not eugenics.

Posted by Choirboy (# 9659) on :

quote:
Originally posted by RuthW:
I think we need to find a word other than "eugenic" to describe this sort of abortion.

I agree. It seems a stretch to compare the decisions of an individual couple to the Holocaust. However, it seems perfectly admissible to question whether national treatment guidelines are, intentionally or unintentionally, promoting consequences that are similar to an explicit policy of eugenics. Or, if that is too strong, whether they meet ethical dards - including a proper standard of informed consent that allows a couple to make informed ethical decisions.

Now, of course, if your ethical standard includes the position that abortion is always wrong, there is no policy that will be acceptable. But even if we adopt an ethical position that the hospital guidelines should respect the parents views on abortion, it appears there are some problems with current policy, at least in terms of providing proper informed consent.

Posted by RuthW (# 13) on :

quote:
Originally posted by josephine:
And the circle was widened to include prisoners, and those with physical handicaps, and those from inferior races. It wasn't particularly systematic -- a variety of influential people and private organizations, opinion makers, textbook writers, even Christian ministers. It was just obvious to everyone that those who would be burdens on society, on the good people, the valuable people, should be gotten out of the way.

But they wanted it to be systematic. And I think what's going on now is different, because people aren't aborting children with Down Syndrome because they'll be "burdens on society" or because they want to make the human race faster, stronger, smarter, better, whatever. They're aborting children with Down Syndrome because they individually don't want to deal with it.

If we keep going down this road, we might be heading toward eugenics. But that's not what's happening right now, and I think we need a different word.

Posted by Choirboy (# 9659) on :

quote:
Originally posted by chukovsky:
My point is that everyone should know that they have the potential for having a child with a genetic disorder. It's down to lack of education/information/people not wanting to think about it that people don't know. We should all know. We should all think about what we'd do in that situation, because every single one of us has the potential to be in that situation if we get pregnant.

I think we need to differentiate between the potential for age-related chromosomal defects which can occur for anyone and hereditary disorders. The latter are not as widespread and your status can be determined by examination of your own (and your partner's) DNA. That changes the questions of screening, the timing of the events, and quite possibly the parent's level of knowledge.

I know that I will never have a child with Tay Sachs disease, for example. It's not genetically possible. However, I couldn't say the same thing about Down's. So the question of whether one can or cannot say "it's fine for you to say because you'll never be in her situation" is perhaps more nuanced. The knowledge of disease is different, and the consequences are different.

Posted by FCB (# 1495) on :

quote:
Originally posted by RuthW:
I think we need to find a word other than "eugenic" to describe this sort of abortion. Eugenics is controlled selective breeding and implies a systematic approach. What we're talking about are lots and lots of individual decisions, and despite the fact that we can see trends, there isn't enough control by some authority for this to be eugenics, and it's certainly not selective breeding.

I'm not wedded to the word "eugenic," but I'm also not comforted by the fact that this trend toward aborting the disabled is the result of "lots and lots of individual decisions" rather than a command from a centralized authority. Perhaps I've read too much Foucault, but it seems to me that none of our decisions are a free as we'd like to think, and that there are social forces that operate through very subtle forms of discipline and are no less pernicious than the more obvious disciplines imposed by centralized powers. Indeed, as Foucault pointed out, they may well be more pernicious because their operation is more hidden.

FCB

Posted by Laura (# 10) on :

Ruth:

The American Heritage Dictionary defines eugenic as follows:

quote:
SYLLABICATION: eu·gen·ic
PRONUNCIATION: y-jnk
ADJECTIVE: 1. Of or relating to eugenics. 2. Relating or adapted to the production of good or improved offspring.

I'd say anything that is related to the production of good or improved offspring is de facto eugenic in intent. I think the word fits. That people don't like it suggests that we're uncomfortable with the truth. What's the old Alice's Restaurant quote? If there's one, they'll think he's crazy, if there's two, they'll think they're both gay, but if there's three, that's movement. Just because it isn't officially coordinated, that doesn't mean it isn't a movement. I think the tendency of the medical establishment to automatically offer these tests and the fact that people tend to be reflexively offered abortion starts turning it into something else. Something like eugenics.

I don't know what else to call it, and still be truthful.

Posted by Rat (# 3373) on :

quote:
Originally posted by Choirboy:
I think we need to differentiate between the potential for age-related chromosomal defects which can occur for anyone and hereditary disorders. The latter are not as widespread and your status can be determined by examination of your own (and your partner's) DNA.

Well, I don't think that's entirely true. There are plenty of hereditary disorders for which the genetic markers have not been identified or a reliable test has not been created. Even some genetically identifiable diseases (such as Charcot-Marie-Tooth disease) have variants with identical symptoms for which the gene has not been identified.

And - as chukovsky mentioned - if nobody in your family's recent generations has had recognisable symptoms you would almost certainly not take part in any genetic screening anyway. Yet the particular combination of genes that made this baby could throw up a disorder.

The chances are low, but it is perfectly possible for parents with no known history of hereditary disorders to produce a child who has one.

Posted by tclune (# 7959) on :

quote:
Originally posted by Laura:
I'd say anything that is related to the production of good or improved offspring is de facto eugenic in intent. I think the word fits.

And I think this summarizes the disquiet of Ruth quite well. From where I'm standing, you are imputing to people who choose to abort a motive of "the production of good or improved offspring." In actuality, the hypothetical people we have been discussing are presumed to be wanting to avoid a situation that they find intolerable. Eliding those two things together is highly problematic. By analogy, it is not at all clear that everyone who would like to avoid bankruptcy is greedy.

--Tom Clune

Posted by RuthW (# 13) on :

quote:
Originally posted by Laura:
I'd say anything that is related to the production of good or improved offspring is de facto eugenic in intent.

Like taking vitamin whatever (sorry, can't remember which one it is) because it's supposed to help guard against spina bifida? Not drinking alcohol during pregnancy? Giving up smoking?

quote:
I think the word fits. That people don't like it suggests that we're uncomfortable with the truth.

I dislike it because I think it's inaccurate. I'm no more comforted than FCB is by the fact that this is a trend made up of thousands of individual decisions, but I think if we're going to apply a label to it, it needs to be more accurate.

quote:
I think the tendency of the medical establishment to automatically offer these tests and the fact that people tend to be reflexively offered abortion starts turning it into something else. Something like eugenics.

Maybe it is headed that way. But I don't think we're there. Yet. And I think this fails to factor in the medical establishment's probable motivation of fear of lawsuits from parents who wanted perfect children.

Posted by Laura (# 10) on :

quote:
Originally posted by FCB:
...Perhaps I've read too much Foucault, but it seems to me that none of our decisions are a free as we'd like to think, and that there are social forces that operate through very subtle forms of discipline and are no less pernicious than the more obvious disciplines imposed by centralized powers. Indeed, as Foucault pointed out, they may well be more pernicious because their operation is more hidden.
FCB

I agree. This changeover has taken place in the last generation or two without much in the way of public debate. In a way, that's scarier.

Posted by josephine (# 3899) on :

quote:
Originally posted by tclune:
In actuality, the hypothetical people we have been discussing are presumed to be wanting to avoid a situation that they find intolerable.

Our tolerance for intolerance is rightly limited.

If a person finds it intolerable to work with a black person, or to live in the same neighborhood with a Jewish person, we don't support their intolerance. We condemn it, in the clearest possible terms.

Yet when the intolerance is directed at the disabled, and when it affects not just where the person works or lives, but whether they live at all, suddenly it's not only to be tolerated, it's to be supported and understood.

Well, I'm sorry, but I don't understand it. The eugenic abortion of fetuses demonstrates an intolerance of disability at a level that is just mind-boggling.

Posted by Laura (# 10) on :

quote:
Originally posted by RuthW:
Maybe it is headed that way. But I don't think we're there. Yet. And I think this fails to factor in the medical establishment's probable motivation of fear of lawsuits from parents who wanted perfect children.

I'm sure this is part of it, too.

Posted by nicolemrw (# 28) on :

quote:
Like taking vitamin whatever (sorry, can't remember which one it is) because it's supposed to help guard against spina bifida? Not drinking alcohol during pregnancy? Giving up smoking?

its folic acid before conception and in the first three months of pregnancy that drastically lowers the chances of spina bifida.

which in a way leads me to this hypothetical question. if a magic fairy were to appear to a couple and wave her wand and say "if you wish it, you will never have a child with a birth defect... no question of abortion or fetal selection, simply that any egg and sperm that meet will concieve a child free of all birth defects", would it be wrong of the couple to say "yes"? and if so, why?

and if so, was it wrong of me to take my folic acid and vitamin supliments when i was pregnant, and to avoid drinking, because i was trying to avoid a child with a birth defect?

and if i'm not wrong in trying to avoid having a child with a birth defect, and if your someone who doesn't believe in the absolute impermissability of abortion, then where does the difference come in? if its permissable to try and avoid having a child with a birth defect by some means, and if its permissable to have an abortion in some circumstances, then why is it impermissable to have an abortion to avoid having a child with a birth defect?

Posted by chukovsky (# 116) on :

quote:
Originally posted by Rat:
Well, I don't think that's entirely true. There are plenty of hereditary disorders for which the genetic markers have not been identified or a reliable test has not been created. Even some genetically identifiable diseases (such as Charcot-Marie-Tooth disease) have variants with identical symptoms for which the gene has not been identified.

And - as chukovsky mentioned - if nobody in your family's recent generations has had recognisable symptoms you would almost certainly not take part in any genetic screening anyway. Yet the particular combination of genes that made this baby could throw up a disorder.

The chances are low, but it is perfectly possible for parents with no known history of hereditary disorders to produce a child who has one.

This is exactly what happened to my uncle and his wife, who now have two children with cystic fibrosis and one without. They chose to go ahead and have the second and the third child even though the first one had already been diagnosed and they knew how hard it was to care for a child with CF. But CF life expectancy is so good these days (40 and rising, so likely to be much higher by the time these two under-10s are in adulthood) that I have a hugely hard time understanding how anyone could decide otherwise.

Other family members have completely supported their decision, even though all they know about CF is that when they were younger children died very young; the same ones mutter about the distant relative, in her 30s with Down Syndrome, and check that soon-to-be mothers in the family are having amnio. That's why I was enquiring if people had noticed a difference in attitudes depending on the disorder a child might have.

Posted by chukovsky (# 116) on :

quote:
Originally posted by nicolemrw:
and if i'm not wrong in trying to avoid having a child with a birth defect, and if your someone who doesn't believe in the absolute impermissability of abortion, then where does the difference come in? if its permissable to try and avoid having a child with a birth defect by some means, and if its permissable to have an abortion in some circumstances, then why is it impermissable to have an abortion to avoid having a child with a birth defect?

Perhaps because some people would say, at that point you already have a child with an inborn disorder; the same as if your child is diagnosed, age 7, with autistic spectrum disorder.

Posted by tclune (# 7959) on :

quote:
Originally posted by josephine:
Well, I'm sorry, but I don't understand it. The eugenic abortion of fetuses demonstrates an intolerance of disability at a level that is just mind-boggling.

You don't need to understand the point of view to recognize that it is distinct from another point of view that you do not share. It may be that you think that eugenics is wrong and that you also think that terminating an unwanted pregnancy is wrong. That doesn't make them the same thing.

Eliding them seems to be a debating point to add credence to a position that is otherwise questionable -- as in "capital is theft."

--Tom Clune

Posted by Rat (# 3373) on :

I'm not sure that parents in this situation are only concerned with their own needs and tolerances. They may also genuinely feel that life would be intolerable, or at least very difficult, for their prospective offspring. Whether you agree with that or not in a particular case, I think it's unfair to assume the motives of the parents are entirely selfish.

From the other side of the issue, my dad has one of those pesky inheritable conditions for which no gene marker has yet been identified. We have no waying of knowing whether I have the bad gene without symptoms, or whether I'm a carrier, or whether I don't have it at all.

Worst case scenario any child of mine could be born with a painful, degenerative condition that would lead to death in early teens (that last didn't happen to my dad, obviously!). Even worse worst case scenario, I could produce such a child then develop late onset symptoms myself, leaving me unable to care for the child.

I struggled a long, long time with this unguessable probability and eventually decided to try for a baby. What I struggle with mainly is my suspicion that this is a horribly selfish decision, since I am forcing an unknown risk on another who has no choice. (At my age, of course, the whole issue is increasingly likely to be moot)

Anyway, I've wandered on somewhat, but what I'm trying to say is that I think it is unkind to assume that every parent who aborts a fetus with a disorder is doing it out of a wish for a perfect child. They may be trying to do the best for everybody concerned, whether wrongheadedly or not.

Posted by Laura (# 10) on :

Re: taking care of yourself so that avoidable defects are avoided is certainly not eugenic anymore than avoiding waking under a falling piano (though you are wasting worry re: not drinking any alcohol at all -- despite the US government's hysteria on the subject, no well-designed independent study has ever demonstrated any kind of raised risk for defects under 14 units of alcohol a week during pregnancy).

Actually, the obsession with the all-natural pregnancy also has overtones -- the mother being responsible for ensuring that the kids are as perfect and brilliant as possible. Perhaps the abortion for defects is part of the same societal impulse, but a darker side.

I'm working on coming up with a less loaded term than "eugenic abortion" that is also truthful and having trouble. Some call it "therapeutic abortion" but that seems a euphemism to me. It's not exactly therapeutic, is it?

[ 03. August 2005, 18:53: Message edited by: Laura ]

Posted by nicolemrw (# 28) on :

chuk, what i said was "if you believe that abortion is permissable in some circumstances". why is it acceptable to abort a fetus that doesn't have a defect, but not one that does?

Posted by Rat (# 3373) on :

Wanted to add: despite what I just said, I share Laura's discomfort that abortion seems to have become almost the default option when a disorder is discovered pre-natally.

Posted by Laura (# 10) on :

quote:
Originally posted by Rat:
Wanted to add: despite what I just said, I share Laura's discomfort that abortion seems to have become almost the default option when a disorder is discovered pre-natally.

This is really what is at the center of my discomfort. It's more about society and what we collectively support and call good through our use of technology, and what we as Christians should do in that society. Which is really the question for so many Purgatory debates, isn't it?

Now, I just had a chat with someone who pointed out that there are some very rare conditions which can be detected in utero and treated in utero, so that would be another real positive good from prenatal invasive testing.

Posted by chukovsky (# 116) on :

quote:
Originally posted by nicolemrw:
chuk, what i said was "if you believe that abortion is permissable in some circumstances". why is it acceptable to abort a fetus that doesn't have a defect, but not one that does?

That's not what I was arguing about: what I was saying is that every woman has the right to say "if I was in her circumstances" (having the risk of a genetic disorder) because every woman IS in her situation.

Posted by RuthW (# 13) on :

Again, facing the off chance that something might go wrong is not the same as facing the very likely chance that a specific thing will go wrong. We're not all in the same boat in this regard. There's no CF or hemophilia in my family. (Though it hardly matters, as I'm unlikely to ever have children.)

Posted by nicolemrw (# 28) on :

quote:

quote:

Originally posted by nicolemrw:
and if i'm not wrong in trying to avoid having a child with a birth defect, and if your someone who doesn't believe in the absolute impermissability of abortion, then where does the difference come in? if its permissable to try and avoid having a child with a birth defect by some means, and if its permissable to have an abortion in some circumstances, then why is it impermissable to have an abortion to avoid having a child with a birth defect?
Perhaps because some people would say, at that point you already have a child with an inborn disorder; the same as if your child is diagnosed, age 7, with autistic spectrum disorder.

chuk, huh? this is what i was responding to.

[ 04. August 2005, 08:12: Message edited by: Callan ]

Posted by Choirboy (# 9659) on :

quote:
Originally posted by Rat:

quote:
Originally posted by Choirboy:
[qb] I think we need to differentiate between the potential for age-related chromosomal defects which can occur for anyone and hereditary disorders. The latter are not as widespread and your status can be determined by examination of your own (and your partner's) DNA.
Well, I don't think that's entirely true. There are plenty of hereditary disorders for which the genetic markers have not been identified or a reliable test has not been created. Even some genetically identifiable diseases (such as Charcot-Marie-Tooth disease) have variants with identical symptoms for which the gene has not been identified.

In which case, amnio won't tell you anything at all, and so is largely moot as far as the OP is concerned. That it could happen to anyone is true enough, but it is not a typical concern of anyone without more information.

quote:
And - as chukovsky mentioned - if nobody in your family's recent generations has had recognisable symptoms you would almost certainly not take part in any genetic screening anyway.

This is not true. We were given genetic screening because of my ethnic background [French Canadian, Italian-American]. There was no history of Tay Sachs in my family, but it does occur in French Canadians and Cajuns with increased frequency.

Posted by saysay (# 6645) on :

quote:
Originally posted by Rat:
And - as chukovsky mentioned - if nobody in your family's recent generations has had recognisable symptoms you would almost certainly not take part in any genetic screening anyway. Yet the particular combination of genes that made this baby could throw up a disorder.

The chances are low, but it is perfectly possible for parents with no known history of hereditary disorders to produce a child who has one.

Me and mine have wrestled a lot with this question recently.

They discovered that my nephew had a congenital heart defect (transposition of the great arteries) through a sonogram. After we finished crying, we went into research mode - finding out everything we could about the condition, its treatment, etc. We talked to doctors, we talked to people who had been through it, we changed our ideas of what was going to happen when my SIL gave birth.

At some point, someone suggested to my brother that, in the US at least (SIL was in France), termination of the pregnancy was one option. He was appalled, as he already had a relationship with his son. I pointed out that this problem was treatable - he wasn’t looking at seeing his wife through the last couple of months of pregnancy only to watch his kid die almost immediately. (As our mother had a Hitler-qualifying disability that she refused to reveal to most Christians, we both have some strong feelings about eliminating certain segments of the population just because ‘normal’ people have to do a bit more).

Since nephew was now seen to be at an increased genetic risk for other disorders, the doctors started pressuring SIL to have an amnio. I objected on general principle, as I didn’t want her having the test just because she was being pressured to do so (not that I told anyone this, as I wasn’t asked). My brother objected on the grounds that it increased the risk of her having a miscarriage, and it wasn’t going to change their decision to carry the baby to term. In the end, SIL had the amnio for peace of mind - she needed to know.

The amnio showed no problems.

And, in the final ironic twist, nephew turned out to have an even more rare congenital heart defect which meant that he didn’t actually need surgery.

Technological advances have allowed us to get on some really iffy moral ground wrt creating designer children. I don’t like that the default position for a lot of people seems to be to test for disorders and terminate the pregnancy if the child isn’t ‘perfect.’ I keep wondering what they’re going to do when their kid grows up, dyes their hair purple, and starts skipping school and bringing home disreputable boys (or, more appropriately for some of my friends, when the kid grows up and becomes a Southern Baptist).

Of course, my grandmother prayed that her children would die as children if they weren’t going to grow up to be Christian. I’d hate to think what would have happened if she had been given the option of knowing and put in charge of the decision.

Posted by chukovsky (# 116) on :

quote:
Originally posted by RuthW:
There's no CF or hemophilia in my family. (Though it hardly matters, as I'm unlikely to ever have children.)

There may be no CF in your family, but 1 in 25 people of northern European descent, slightly lower for southern European, carry the gene, so you have a pretty high chance of carrying the gene. Much higher than, for example, the risk of having a Down Syndrome child at 35 (1 in 300). The incidence at birth is of the same order of magnitude (1 in 2500 versus 3 in 2000).

They are talking about introducting universal testing at birth for CF - families would be very happy for that to happen because currently many children aren't diagnosed for a couple of years which gives children a huge setback in terms of therapy. So the next step might be universal prenatal testing. There currently isn't preconception counselling or testing unless you have the gene in the family, I imagine the risk of Tay-Sachs must have been higher in Choirboy's family than the general risk of CF in the UK population (unless they have universal counselling/preconception testing for CF in people of N. European origin where he lives?)

This is actually where I see the slippery slope to eugenics: currently we can find out quite a lot of things pre-birth, and we have already decided some of them (Down Syndrome, cleft palate, CF) are allowable grounds for abortion, whereas others (sex, dyslexia*) are not. So the law/society already decides what type of foetus can be terminated and what can't, as well as parents.

*There are I think a couple of families in which a gene for dyslexia has been discovered. I used to work with a family that had a gene, which has been identified, for a spoken language impairment: affected members had about a 10 point drop, on average (range 0-30) in IQ, taking at least one member into the not-really-employable range, with about a further 20 point drop in the equivalent language measure, however most of the family had regular employment: chef, cleaner, joiner etc. Family members are hard to understand, though, don't learn to speak till they are 4 or 5, and at least two members had had psychiatric illness too (we have no idea if it's related. It's a big family). The effects are pretty variable between individuals in the family.

When I last saw them one of the unaffected young adults' girlfriend was expecting a baby. He wanted to know if his baby could have the disorder (the answer was no since only affected family members have affected children). But we strongly suspected his girlfriend probably, rather than he who knew his siblings had good quality of life, was wondering about a termination if the baby was affected.

So, where will society draw the line? Will we say it's fine to terminate a child with the gene for autism but not a spoken language disorder? A spoken language disorder but not dyslexia? Dyslexia but not an irritable temperament? Irritability but not femaleness?

Posted by Littlelady (# 9616) on :

I have found this thread fascinating and thought provoking.

My own angle on this issue is perhaps a little different from what has been discussed so far. I think medical science has considerable power in western cultures and this power in part relies upon the unknown. So as a 41 year old woman who may find myself pregnant, I will be advised that the risks of my baby suffering from a long list of possibilities are very high, and I will be offered tests and informed of my options dependent upon the results of those tests. I will not be offered any positive information (such as the potential for success) or encouragement or simple celebration at the fact that I've found myself pregnant. The emphasis, for whatever reason, is upon the 'what ifs', and only the negative 'what ifs', and so I am trapped.

I've thought this issue through in great depth over the last few years, partly because I'm ageing and don't have children, but mainly because my two sisters-in-law and now my sister (all of whom are in their mid 30s and have had/are having their first child) have gone through the whole ritual of becoming informed, giving almost everything up (just in case), having scans, tests and more scans until finally two of them produced healthy baby boys and one will hopefully produce a healthy baby girl (because I would now like a niece, please).

The one common denominator in their experiences has been the presence of fear: fear that eating soft cheese will give the baby lysteria; that eating nuts will give the child an allergy; that smoking will make their baby small; that being pregant in their mid 30s at all will leave their baby disabled.

I would suggest that when a pregnant couple is 'advised of the risks', what they are in fact faced with is not the opportunity to make an 'informed decision' but rather the choice to overcome their fear of how their baby may turn out and whether or not they can handle the outcome. I don't think this stage stands alone, but is the finale to the ritual of pregnancy that seems to me to consist of so many fears, most of which have arisen because of medical knowledge and statistical analysis.

I don't believe that what is going on here is eugenics. But I do think it is an issue of social control. I am not blaming the medical profession, btw: playing on fears (either deliberately by scaremongering or indirectly through the imparting of knowledge) seems to be a feature of contemporary UK society. What is happening is, I think, more subtle than eugenics; more in line with Foucault than with Hitler.

Posted by Littlelady (# 9616) on :

Just want to say sorry if my post seems out of synch with the debate. By the time I'd got my 'deepest thoughts' together another zillion posts had been written! [Eek!]

Posted by josephine (# 3899) on :

quote:
Originally posted by RuthW:
I think we need to find a word other than "eugenic" to describe this sort of abortion.

I've been thinking about this. Maybe it isn't yet eugenics -- the yet bothers me, but I'm trying to go there. Can we call it prenatal euthenasia? Is that both honest and accurate?

Posted by Foolhearty (# 6196) on :

quote:
Originally posted by chukovsky:

quote:
Originally posted by Foolhearty:
People in this "borderline" range may have fared better in a simpler, agrarian society. They'd have been made occasional fun of, taken advantage of, just as they sometimes are now -- but they'd have been able (if not physically handicapped) at least to scratch out a living and to contend with most of what was required of them.

Anyone who is under any illusion that it is somehow "easier" in more traditional societies should have watched African School on BBC4. I have been involved in a project looking at children with all kinds of disabilities in a similar setting, trying to work out how to diagnose disabilities accurately, persuade parents their children are educable, and find school places for them, and the story they showed of the fate of children with special needs in that setting is all too common.

Here is an interview with the special needs teacher of the primary school they are featuring.

Point is taken; however, I didn't mention anything about traditional societies. I mentioned simpler, agrarian societies (meaning earlier in time). And it is true that the practice of institutionalizing people with disabilities developed in response to some pretty horrific treatment of those individuals, often by
family members. However, this institutional response more-or-less coincided with the fallout from increasing industrialization and societal complexity.

Life really was simpler (and often also more brutal) earlier in time. People didn't need to read or drive or figure out surcharges on their utility bills.

Any contemporary society -- in first, second, or third worlds -- is forced to deal with the complexities of modern life at some level.

Posted by RuthW (# 13) on :

quote:
Originally posted by josephine:

quote:
Originally posted by RuthW:
I think we need to find a word other than "eugenic" to describe this sort of abortion.
I've been thinking about this. Maybe it isn't yet eugenics -- the yet bothers me, but I'm trying to go there. Can we call it prenatal euthenasia? Is that both honest and accurate?

"Prenatal euthanasia" strikes me as an excellent term. Let's use it for a while and see if the implications that emerge seem right.

ETA: You've clearly got your thinking cap on, josephine, as usual. Thanks for working on coming up with this term.

[ 03. August 2005, 22:37: Message edited by: RuthW ]

Posted by josephine (# 3899) on :

I think it will work for me. It allows the question of whether the intent or the effect of these thousands of individual decisions is eugenic to be a separate discussion.

And it also, I think, clarifies why my response to prenatal euthenasia is different when the fetus is anencephalic than when the fetus has a cleft palate or a club foot. I think euthenasia is problematic for many reasons, but in the case of the fetus with anencephaly (or comparable defects), I can put myself in the other parent's shoes and find where the decision came from. For other defects, I try to put myself in theother person's shoes, and try on their decision, and it remains horrific.

Posted by Peronel (# 569) on :

My family has an obscure genetic condition. My mother and my grandmother have it and I - I'm told - have a fifty percent chance of having it. I don't know, though: there is a gene test, but it's only available for research so, although my blood is sitting in a lab somewhere in central Europe, it'll only be tested if a researcher decides my family is particularly interesting.

So the odds are I won't know for sure until I start manifesting symptoms. But, if I do carry the gene, there's a fifty percent chance I'll pass it onto my children.

As genetic problems go, it could be a lot worse. An increased risk of heart disease, aneurism and of miscarriage. A near certainty of aesthetic changes to my face and neck which can be pretty unsightly. And a good chance of losing central vision. But presentations vary, and what the odds are of developing life changing problems is unknowable. The problem with these rare conditions is that there aren't enough patients to crunch the numbers.

So I've had to do some weighing up of what this means for my life, and for whether or not (if the opportunity presents) I have children. If I could wave a magic wand I would choose that my kids do not get this gene. But magic wands don't happen.

Would I terminate a pregnancy if the foetus carried the gene?* Almost certainly not. But I'm not sure. Every parent wants the best for their kids, and peering in the mirror anxiously to check for the early changes in your face - knowing that those changes might lead to blindness - is not something I'd wish for my children. Were the condition something like cystic fibrosis, which carries with it the likelyhood of early death, I think I'd be rather more inclined to abort.

I think the cut off point - for me anyway - would be when 'a pregnancy' becomes 'this child', which is an emotional transition which will happen at different stages for different women. And one of the difficult decisions, I suspect, that anyone in this situation has to make is weighing up what is best for that child-to-be with what may be best for the family.

Because whilst society absolutely should be able to cope with 1% or whatever it is (made up figure!) of individuals with disabilities, for that family it's 100%, which is a very different ball game.

All I can say is that, emotionally, my concerns about passing on a genetic defect are not, I don't think, about wanting a perfect "designer baby" to satisfy my own needs; instead, they are about not wanting to see that child suffer. That may be "intolerance of disability" but I do not think it's entirely selfish.

Peronel

*This assumes a test were available. Right now, it ain't.

Posted by josephine (# 3899) on :

quote:
Originally posted by Peronel:
All I can say is that, emotionally, my concerns about passing on a genetic defect are not, I don't think, about wanting a perfect "designer baby" to satisfy my own needs; instead, they are about not wanting to see that child suffer. That may be "intolerance of disability" but I do not think it's entirely selfish.

It may not be selfish. But I think it's unrealistic.

The first noble truth of Buddhism is that life means suffering. M Scott Peck starts his book, The Road Less Traveled with the statement, "Life is difficult."

When I was trying to decide whether to divorce my first husband, I told my priest that I wanted to do whatever would protect my children from pain. He told me that life is painful, that I can't protect them from pain. If you're lucky, you might get to choose this pain vs that pain. But you don't get to choose a life free of pain.

A woman I knew on a disability support list some years ago used to whine and moan and complain. Why was she afflicted with her disability? If only she didn't have this problem, she thought, she wouldn't have any problems.

But that's not true. If she hadn't had that problem, she'd have had other problems. None of us gets a problem-free, pain-free life.

The question to ask, when deciding about euthenasia (prenatally or postnatally), is whether the suffering is so severe, intractable, unmanageable, and pervasive that it is truly better to be dead than to continue to live. In some cases, it might be reasonable to conclude that it is. But most people would agree, I think, that the cases where euthenasia for a nonterminal illness are appropriate are few and far between. Certainly, no one would consider euthenasia for a child or adult with Down Syndrome or cleft palate. Why is it acceptable for a fetus?

I know you have the perspective of seeing your family members deal with the disease you're most at risk of. You know whether they would consider euthenasia appropriate for their disorder, and if so at what stage. Others might want to look at Not Dead Yet for the perspective of at least some people living with severe disabilities.

Posted by Laura (# 10) on :

quote:
Originally posted by RuthW:
"Prenatal euthanasia" strikes me as an excellent term. Let's use it for a while and see if the implications that emerge seem right.

ETA: You've clearly got your thinking cap on, josephine, as usual. Thanks for working on coming up with this term.

Works for me, too. Also then we can drag into the discussion the tangent about how there is now a protocol in the Netherlands for euthanizing babies who suffer from awful painful soon-to-be-fatal defects.

Posted by Presleyterian (# 1915) on :

quote:
Josephine wrote: Yes, I do think that eugenic abortions are worse than other abortions, because I think that eugenics is an unmitigated evil.

Should they therefore be illegal? If so, who should be prosecuted? The doctor? The parents? All three?

Posted by josephine (# 3899) on :

quote:
Originally posted by Presleyterian:
Should they therefore be illegal?

I don't think it would be practical to make them illegal. As long as voluntary abortions are legal, saying you could have one for this reason but not for that reason would be unenforceable. "Yes, I found out the fetus carried Down Syndrome, but I also found out at about the same time this other situation, which makes this a really bad time for me to be pregnant at all." And how would you prove the "real" reason? It just wouldn't work.

But that's the lesser reason that it wouldn't work. The greater reason is that our society has already accepted eugenic abortion -- make that prenatal euthenasia as the normal, acceptable, appropriate thing to do if the fetus has any diagnosable disorders. You wouldn't be able to make it illegal if you wanted to, and if you somehow were able to make it illegal, you'd never be able to enforce it. Making something illegal when most people not only don't consider it wrong, but many people consider it the right thing to do is just not going to accomplish anything.

The thing to do, I think, is to work for a cultural change. We need to work towards a culture where people with disabilities are accepted, where intolarance toward the disabled is considered just as ugly and evil as racism. We need to work for a society that treats its vulnerable members with justice, where aborting a fetus because it's disabled is just as unthinkable as aborting a fetus because the daddy is black.

Posted by Laura (# 10) on :

quote:
Originally posted by Presleyterian:

quote:
Josephine wrote: Yes, I do think that eugenic abortions are worse than other abortions, because I think that eugenics is an unmitigated evil.
Should they therefore be illegal? If so, who should be prosecuted? The doctor? The parents? All three?

Nope. Not possible to make this illegal and not "regular" abortion. And anyway, it's clear that even those who feel the strongest here are willing to consider prenatal euthanasia for hopeless and fatal disabilities.

It's a question of Christian witness and Christian ethics in difficult situations.

IMHO, of course.

Posted by Foaming Draught (# 9134) on :

Sorry if this is veering into tangent territory, but there is emerging a third way between serene acceptance and abortion, - reported here a couple of years ago - of foetal corrective surgery. Of course, the OP's invasive screening will have taken place first. The financial cost is enormous compared to abortion, and that will produce triage dilemmas.

Posted by Christine (# 330) on :

Over 20 years ago I gaver birth to a full-term, apparently healthy baby who died 3 days later from a rare congenital heart defect. There was no indication of anything wrong during pregnancy, and I believe such a case would still slip below any current screening tests - not that I had any. Three comments
- I have always been thankful I did NOT know what was about to happen. It was traumatic enough without that.
- I was offered but refused amnio (but would have to travel some considerable distance to get it) on my subsequent 2 pregnancies (which were fine). This particular defect wouldn't be detected, and I wouldn't abort anyway (esp as death was inevitable if the condition did repeat). I certainly didn't want to go through such agony again - but it was that or never to get pregnant again.
- I endorse other people's comments about the effective randomness of rare genetic abnormalities; there's no family history, no-one is sure whether the cause of the defect really is genetic, or possibly environmental - and this can happen to anyone. You really can't keep worrying about it - though you do.
Of course I recognise that my views might be very different if my son lived a life of severe disability instead of dying so young. I really don't know.

Posted by chukovsky (# 116) on :

quote:
Originally posted by josephine:

quote:
Originally posted by Presleyterian:
Should they therefore be illegal?
I don't think it would be practical to make them illegal. As long as voluntary abortions are legal, saying you could have one for this reason but not for that reason would be unenforceable. "Yes, I found out the fetus carried Down Syndrome, but I also found out at about the same time this other situation, which makes this a really bad time for me to be pregnant at all." And how would you prove the "real" reason? It just wouldn't work.
[snip]
The thing to do, I think, is to work for a cultural change. We need to work towards a culture where people with disabilities are accepted, where intolarance toward the disabled is considered just as ugly and evil as racism. We need to work for a society that treats its vulnerable members with justice, where aborting a fetus because it's disabled is just as unthinkable as aborting a fetus because the daddy is black.

Currently, abortion on the grounds of gender is not allowed in the UK. In many areas families can find out their child's gender before birth. In some areas it is policy not to tell the gender. Where families find out the gender, it is perfectly possible for them theoretically to then say "my marriage is going to break up if I have another baby" when actually what they mean is "my husband says I'm not a proper wife if I give birth to another daughter". This, I assume, is why some areas have the no-gender-information policy. I believe this applies to families who have had amniocentesis for other reasons too.

It would be possible in principle - and is what is done in some areas - for medical authorities to have a list of conditions/genetically determined characteristics that they do tell the family and a list they don't tell the family, so that decision to terminate can be made on any information they have, but cannot be made on other information.

Any condition in which chances of survival are likely to be improved by prenatal/perinatal treatment, c-section etc., might reasonably be expected to be on that list. Since at the moment what isn't told the parents seems to be randomly determined, based on where you live, perhaps that's where society needs to take a good hard look.

(On the last point: I knew someone who, on finding she was pregnant and penniless by her equally penniless E. African fiancé, proposed to her parents that she spend a couple of years at home in the rural Midwest with the baby, till she and he were in a position to support all three of them. Her mother reminded her that she really didn't remember what life was like at home, and she had a termination. This was about 10 years ago.).

Posted by Laura (# 10) on :

See, now, in places like India and China, local technicians will buy a sonography machine almost solely for the purpose of determining sex so that women can abort girls. This has resulted in towns where there is a marked sex imbalance. While the Indian gov't has made some move to ilegalize abortions for gender selection and prevent sonographers from reporting the gender, I find myself wondering what the result of that will be. Before gender-based abortion, poor women typically poisoned or exposed or drowned extra girl babies. I think an abortion at 16 weeks for that purpose is an evil, but is it more evil than murder after birth? I don't know.

Chukovsky:
What you propose vis-a-vis not giving parents information would be a legal/political lead balloon. People are going to feel they have a right to know everything they can from these procedures. And frankly, reasoning like that from a nurse someone quoted earlier in the thread is going to drive it, too. Severely disabled children are a financial burden in a socialized health system. I'm betting there are people in gov't who think i.d.-ing those cases is a positive good.

Posted by chukovsky (# 116) on :

I'm betting poor women still drown or poison girl babies; if you are rich you can afford an ultrasound and an abortion.

If we will give parents information on those serious disorders we can currently test for, but we won't give (some) parents information on gender, where then will we draw the line? If we can test for skin/hair colour prenatally, will we allow parents to know that? What about temperament? Both of these seem to have a strong genetic component.

Most of the things which currently parents can have information on, and choose to terminate based on, are things with extremely variable outcomes - and some individuals who test positive genetically can lead regular lives with long life expectancies. I think this also worries me, as parents seem - for whatever reasons - to be operating on the worst-case scenario (my child will die aged 2, my child will never live independently) whereas given the way treatment and therapies are going their child is likely to live to 40/hold down a job.

I just see this leading to terminations at the slightest of risk to the child's wellbeing (some people die of asthma attacks so we should not have a child with a risk of having asthma, some children with dyslexia don't finish school so we shouldn't have a child with dyslexia).

Posted by FCB (# 1495) on :

quote:
Originally posted by chukovsky:
I'm betting poor women still drown or poison girl babies; if you are rich you can afford an ultrasound and an abortion.

Without claiming that abortion is an "easy" choice, I suspect it is somewhat easier than infanticide.

FCB

Posted by Laura (# 10) on :

quote:
Originally posted by FCB:

quote:
Originally posted by chukovsky:
I'm betting poor women still drown or poison girl babies; if you are rich you can afford an ultrasound and an abortion.
Without claiming that abortion is an "easy" choice, I suspect it is somewhat easier than infanticide.

FCB

Right.

And chukovsky: you're assuming a world in India where poor women are prevented from aborting because they haven't the money to pay an OB to do it. Poor women often (apparently) have access to low-cost sonography, but the abortion isn't necessarily the expensive surgical kind. That's not how AIUI poor village women abort, for the most part. They know the herbs to use. And according to the NYT article I read a while back, rich and middle class are less likely to abort girl children as it's for the poor that having the wrong kind makes the most impact, at least in India and China.

Posted by Adeodatus (# 4992) on :

I'm with josephine and others in this debate who see this as involving some kind of eugenics. Maybe not systematic eugenics in a "strong" sense, but sufficiently systematic in that the medical people know which conditions and disabilities they want to screen for.

I read a fascinating paper recently that touches on the subject. In it, the researcher put some questions to research ethics committees in various medical establishments. When asked simple questions like "is it ethical to screen for Down's syndrome?" most of these ethicists answered "yes". However, when the question was broken down and the implications of performing the test were examined, most of the ethicists came to the conclusion that it was not ethical.

I'm disturbed by the thought of a society that places such arbitrary limits on who can - or cannot - be born into it.

Posted by Choirboy (# 9659) on :

I don't have a problem with the term prenatal euthanasia, but I would actually rather talk about eugenics. The distinction I see is that an individual couple makes a decision about prenatal euthanasia, but eugenics is essentially a policy or group action.

I'm not really interested in spending time talking about an individual couple's decision, as I think that will inevitably detour into dead horse territory. I do think it is important to discuss whether current treatment guidelines are a de facto policy for eugenics. After all, all of those individual choices that contribute to a trend are made on the basis of advice provided under these guidelines.

Posted by tclune (# 7959) on :

quote:
Originally posted by Adeodatus:
I'm with josephine and others in this debate who see this as involving some kind of eugenics. Maybe not systematic eugenics in a "strong" sense, but sufficiently systematic in that the medical people know which conditions and disabilities they want to screen for.

I wonder to what extent that is true. Much screening is a matter of what tests can be performed relatively easily. The existence of the test at a reasonable cost may decide that you screen for a given thing. The extent to which these things are systematic is not obvious to me.

Certainly, there are tests which have been developed in response to specific felt needs -- be they from the medical establishment or the general public. But it isn't obvious to me that there is quite the top-down vision of what should be that your post suggests.

Indeed, my sense is that this lack of reflectiveness is part of what weighs on Laura. While the abortion component adds a huge emotional wild-card into the discussion, it seems that the overall relationaship between tests and social significance can be seen as a matter of concern in many contexts.

For example, many people are concerned that identifying genetic markers that are correlated to, say, prostate cancer susceptibility may result in health insurance companies adopting a rate structure that would make some people uninsurable. Is this what we want as a society, or is it an unintended consequence of medical research? To what extent should we make the application of this research conform to a centralized, ideologically-based purpose, and to what extent should we just let the chips fall where they may?

This seems to be basically the same abstract question that Laura was raising with the example of amniocentesis. But I may have misconstrued her concerns.

--Tom Clune

[ 04. August 2005, 15:17: Message edited by: tclune ]

Posted by saysay (# 6645) on :

quote:
Originally posted by Choirboy:
I don't have a problem with the term prenatal euthanasia, but I would actually rather talk about eugenics. The distinction I see is that an individual couple makes a decision about prenatal euthanasia, but eugenics is essentially a policy or group action.

I'm not really interested in spending time talking about an individual couple's decision, as I think that will inevitably detour into dead horse territory. I do think it is important to discuss whether current treatment guidelines are a de facto policy for eugenics. After all, all of those individual choices that contribute to a trend are made on the basis of advice provided under these guidelines.

So you would rather talk about an individual doctor's decision to recommend an amnio and suggest that abortion is an option? Guidelines are guidelines, not rules.

Posted by Choirboy (# 9659) on :

quote:
Originally posted by saysay:
So you would rather talk about an individual doctor's decision to recommend an amnio and suggest that abortion is an option? Guidelines are guidelines, not rules.

You are right that guidelines are guidelines. But they don't just come from nowhere - the treatment guidelines represent the consensus opinion of the clinical community involved. It is reasonable to make a case (or defend against an assertion) that those guidelines as such represent a de facto policy of eugenics. In particular, they will have infludence on both doctors and parents in the individual decisions that are made (along with many other factors), even if not one of compulsion. Insurance companies also put some stock in treatment guidelines, so this is another source of potentially fruitful questioning.

Talking about a hypothetical individual (whether a doctor or parent or an insurance claims executive or a disabled person) is only going to degenerate into dead horse territory. I'm fine if people want to talk about that, but there is another place.

On the other hand, guidelines will have a role in shaping societal behavior in general on average (if not necessarily in every specific case). If you're interested in the [i]trend[i/] toward prenatal euthanasia then this is a good place to start. If you're interested in debating abortion in specific cases (and calling it prenatal euthanasia as a genus), it still strikes me as dead horse territory.

Posted by josephine (# 3899) on :

I think there might be an advantage in calling these abortions prenatal euthanasia rather than eugenic abortion. Parents aren't going to see what they're doing as eugenic; those making the decision won't find that term applicable to their particular situation. But they could very well see the term euthanasia as applicable.

And I think, perhaps, if that were the standard term used for this sort of abortion, it might well make it clear precisely why it is an inappropriate choice when the fetal defect is slight and the prognosis is good -- cleft palate, for instance, or red hair. (In the article Adeodatus linked to, 10% of the ethics teams thought that screening with subsequent abortion for "embarrassing conditions" like red hair was ethical.)

My position on this seems to be at one extreme. For those who don't find prenatal euthanasia for relatively minor conditions troubling -- why not?

Posted by Moth (# 2589) on :

quote:
Originally posted by Laura:
Chukovsky:
What you propose vis-a-vis not giving parents information would be a legal/political lead balloon. People are going to feel they have a right to know everything they can from these procedures. And frankly, reasoning like that from a nurse someone quoted earlier in the thread is going to drive it, too. Severely disabled children are a financial burden in a socialized health system. I'm betting there are people in gov't who think i.d.-ing those cases is a positive good.

This is the aspect I was pondering on earlier. At what point, if ever, will it be seen as a public good to abort "defective" foetuses? Will the point be reached sooner in countries with a government-run health system, or in those with private healthcare?

I thought initially that the former was more likely, but I think it quite possible that insurance companies might force the issue by excluding ongoing care of babies whose disabilities were, or could have been, detected in utero by standard tests.(Or do they do that already?). Governments are suseptible to voters having strong views on the sanctity of life, and most western governments are big on human rights at the moment. I can't say I've ever encountered an insurance company with principles.

I must say that my own experience in the NHS, when faced with a positive test result and abnormal pregnancy, was an immediate acceptance and noting of my wish to continue with pregnancy regardless of the defect found. No-one ever questioned that decision, or put any pressure on me at all.

I so disliked the idea of "conditional pregnancy" that I did not have any of the standard tests in my second and third pegnancies. I reasoned that, since I had no intention of terminating for any defect at all, the tests were pointless. I did have scans, but did not know the sex of the baby. I accept that some tests might be useful to help decide the mode of delivery etc., but tests for abnormalities not requiring treatment before or during birth were not for me!

Posted by tclune (# 7959) on :

quote:
Originally posted by josephine:
My position on this seems to be at one extreme. For those who don't find prenatal euthanasia for relatively minor conditions troubling -- why not?

I just don't tend to see a fetus as a human being at all. I understand that there are Christians who see all sperm as somehow human (though seldom do they see eggs in that light...), which stretches through to zygotes and fetuses. I understand that such people genuinely feel that stem cell research is hideously Mengelean, for example. I just don't.

I recognize a living person as a person. I do not recognize precursors to humanity as human. With modern technology, you can't avoid gray areas -- if science can generate life on a petrie dish, does that mean that all fetilized eggs are as human as an infant?

For some, the answer is yes. For me, I am willing to let the adults involved choose their view. An expectant mother may feel that her fetus is her "baby," and may genuinely mourn its "death" in the event of a miscarriage (quotes to recognize alternate understandings, not to suggest anything artificial in the woman's view). I would genuinely want to mourn with her over her loss, without feeling that I had to say that a woman who chose to voluntarily terminate a pregancy was commiting murder.

It isn't really a matter of argumentation. It is all, wherever one happens to be along the spectrum, a lot more reptilian than that.

--Tom Clune

Posted by FCB (# 1495) on :

quote:
Originally posted by tclune:
I understand that there are Christians who see all sperm as somehow human

Aside from the Catholic family in Monty Python's The Meaning of Life, I've never heard this view espoused.

FCB

Posted by sewanee_angel (# 2908) on :

I know this discussion is not really about creating "designer children" (ie genetically altering/engineering children to have traits we value) before/during pregnancy but I think the two issues are closely related.

Preimplantation genetic diagnosis* seems to be growing in acceptance. Downs, CF, gender for "family balancing" are all mentioned as things one might wish to screen. It seems (from my quick google search) that there has been a bit more public debate about the ethics of prescreening/genetically altering while in-utero for "improvements" but not about prenatal euthanasia. Is that because while, secretly, people may all want** children who are above average we don't want to feel like the neighbors cheated to get their above average child?

Here's a link to an interesting article about Down's and screening.

*This site is for a company that offers such services.

**Yes, I'm generalizing and it isn't true for many people, maybe not even a majority.

[ 04. August 2005, 19:17: Message edited by: sewanee_angel ]

Posted by Laura (# 10) on :

quote:
Originally posted by tclune:
I just don't tend to see a fetus as a human being at all. I understand that there are Christians who see all sperm as somehow human (though seldom do they see eggs in that light...), which stretches through to zygotes and fetuses. I understand that such people genuinely feel that stem cell research is hideously Mengelean, for example. I just don't.

Actually, I think most people see it as a spectrum. It's undeniably human (what the heck else would it be???) but at which point does it acquire the rights of a born human being? I think the arguments there, you find on the Abortion thread in Dead Horses. At some point, around I would imagine viability, people are going to start thinking, "at this point, it's not abortion, it's infanticide". Legally, that point is around viability right now, which is probably a bit late.

But anyway, back to the topic at hand, I can see why thinking that a fetus at any point is not human until it has been born would cause tclune to feel the way he does.

But its humanity or not doesn't mean that the decision to abort for defects of any kind at all will not affect the human population. Of course it will.

Posted by tclune (# 7959) on :

quote:
Originally posted by Laura:
But its humanity or not doesn't mean that the decision to abort for defects of any kind at all will not affect the human population. Of course it will.

Indeed, as will the birth of any baby (which is why I want pregnancy to be legal, safe, and rare [Biased]

).

--Tom Clune

Posted by josephine (# 3899) on :

quote:
Originally posted by Laura:
But its humanity or not doesn't mean that the decision to abort for defects of any kind at all will not affect the human population. Of course it will.

And one of the ways it may affect the rest of us, I'm afraid, is that it can lead us to believe that those who have already been born with Down Syndrome or red hair or other inconvenient condition shouldn't have been allowed to be born.

I don't think many people are saying that out loud, yet.

But you do find, in the world of special education, people who think it's unfair that kids with special needs should get anything any different from anyone else. Even when it's not about money -- I know parents who have been told that it's wrong that their daughter be permitted to have a water bottle at her desk or to take extra breaks, even though she's taking medication that causes intense thirst. Other kids aren't allowed that. Why should she be?

When I was in college, there were people who thought it was absurd to put in curb cuts and ramps, because there weren't any students who used wheelchairs at the school. We had a deaf student who had been trained at an oral school, and some people thought she shouldn't be there. Her voice was too unpleasant, she was too difficult to work with (you had to face her when you talked to her), she was too difficult to understand. She should have gone to the deaf school, with other people like herself.

Does the availability of prenatal euthanasia reinforce this attitude? Make it more acceptable and more prevalent?

I think it does. But if tclune, or anyone else, disagrees, I'd like to hear their reasons.

Posted by nicolemrw (# 28) on :

quote:
Does the availability of prenatal euthanasia reinforce this attitude? Make it more acceptable and more prevalent?

i doubt it. these attitudes pre-existed long before the availability of legal abortion.

Posted by tclune (# 7959) on :

quote:
Originally posted by josephine:
Does the availability of prenatal euthanasia reinforce this attitude? Make it more acceptable and more prevalent?

I think it does. But if tclune, or anyone else, disagrees, I'd like to hear their reasons.

It may reinforce that attitude, but I'm not sure that that point matters. By analogy, it is possible that allowing people to die with dignity can give comfort to those who think that anyone who can't pull his or her weight should be liquidated. But that hardly provides a rational basis for requiring all of us to undergo every possible invasive medical procedure.

In general, "slippery slope" arguments are suspect, at least to my mind. The basic form of the argument is: sure, this isn't wrong. But it moves in a direction that could end up being wrong if we continued on that path ad nauseum. The problem with this form of argument is that it can be used to argue against any behavior: sure, eating vegetables isn't wrong. But it can lead to gorging yourself until you are too fat to get out of your house. I refuse to participate in any form of activity would make gluttons feel less sinful.

I recognize that you believe prenatal euthanasia to be wrong. That is a perfectly respectable view that can be (and you have) defended on its own merits. But the validity of your position has nothing to do with discomfiting those who would deny the rights of handicapped people.

--Tom Clune

Posted by chukovsky (# 116) on :

quote:
Originally posted by Adeodatus:

I read a fascinating paper recently that touches on the subject. In it, the researcher put some questions to research ethics committees in various medical establishments. When asked simple questions like "is it ethical to screen for Down's syndrome?" most of these ethicists answered "yes". However, when the question was broken down and the implications of performing the test were examined, most of the ethicists came to the conclusion that it was not ethical.

Interestingly, more of the committee members said it wasn't ethical if told the extra cost of a child with the condition was £100,000 than if told it was £5000.

The people they asked were members of research ethics committees but I know there are hospital ethics committees that decide on treatment issues (e.g. as seen on TV the other day, if a child aged 10 needs a heart-lung transplant and her parents say yes, is it up to her to decide or can it go ahead without her consent?). That would be who decided things like this, at the moment, I would imagine, since there doesn't seem to be a nationwide policy in the UK.

from the article:

quote:
33% of respondents in a survey in Russia indicated that they favoured compulsory termination of pregnancy if testing identified a genetic disorder in the fetus

Posted by Newman's Own (# 420) on :

quote:
33% of respondents in a survey in Russia indicated that they favoured compulsory termination of pregnancy if testing identified a genetic disorder in the fetus

I find this truly chilling. I have found many comments on this thread regarding eugenics, especially Josephine's, to be excellent expressions of what I myself would hold about the subject. (I had hesitated posting on this thread, because I have no children and my views could be taken as naive as a result. Nonetheless, I do have a chronic disability - and even red hair.)

I have known various mothers of disabled children (Downs syndrome, for example) who had only to take their child anywhere to solicit comments such as "didn't you have the amniocetesis?" The implication that the child should have been aborted, and that this course of action would have been taken had the parents only known the child was disabled, saddens me immensely.

Some of the posts and links, and other information I have read on the topic, upsets me because undesirables are classed by what they may cost the NHS/insurance - eliminate them and there could be so much more money available.

I am no abortion advocate, but could certainly understand parents questioning whether they could deal with having a disabled child. Yet I would hate to see anyone aborting a foetus because of a perception that it would be a strain on society's resources.

Though this was not in relation to abortion, I can remember when those seeking to improve education and other resources for the disabled (of which there was a shocking lack not so many decades ago) promoted this by saying they could become (for example) employed, tax paying members of society. Of course, in many cases this was true, but the same concept can be dangerous taken to any extreme.

I would hate to see the value of life evaluated on the basis of either the potential for 'productivity' or the projected expenses for an individual's medical care. There is no clearcut answer about the Christian approach to a decision on the part of a couple about whether to have a disabled child per se - their motives could be charitable and generous, for example. But a general idea that the value of any person's life (some of you are going to hate me for this - but I cannot refrain from adding that our human nature has been deified in the Incarnation, and everyone has the stuff of the saint within) is qualified by a perceived economic use or related strain seems quite out of accord with the Christian faith.

Posted by sharkshooter (# 1589) on :

quote:
Originally posted by Laura:
See, now, in places like India and China, local technicians will buy a sonography machine almost solely for the purpose of determining sex so that women can abort girls. This has resulted in towns where there is a marked sex imbalance. While the Indian gov't has made some move to ilegalize abortions for gender selection and prevent sonographers from reporting the gender, I find myself wondering what the result of that will be. Before gender-based abortion, poor women typically poisoned or exposed or drowned extra girl babies. I think an abortion at 16 weeks for that purpose is an evil, but is it more evil than murder after birth? I don't know.

They obviously have a serious problem. I read this today ...

quote:
Sugita Katyal
Reuters
NEW DELHI

NEW DELHI - A 10-year study of babies born in hospitals in the Indian capital Delhi has found the sex ratio unnaturally skewed in families that already have a girl, with the likelihood of a female fetus being aborted increasing the more daughters a family has.

The study recorded that the number of female births was 542 per 1,000 boys if the first child was a girl. If the first two children were girls, there were just 219 girls born for every 1,000 boys.

"Our study showed 50% of female fetuses are eliminated if it's a second girl and after two girls almost three-fourths of the female fetuses are eliminated," said Joe Varghese of the Christian Medical Association, which carried out the study.

Across India, experts say the number of women dropped to 933 for every 1,000 men in 2001, from 941 in 1961, largely because of a long history of female infanticide and, more recently, sex-selective abortions. In 1901, the ratio stood at 972 women for every 1,000 men.

How do you police such a thing?

Posted by josephine (# 3899) on :

quote:
Originally posted by tclune:
In general, "slippery slope" arguments are suspect, at least to my mind.

In general, I would agree. But it appears significant, and perhaps valid, in this particular case, because we have been down this particular slippery slope, or one very much like it, in recent history. In fact, we've been down several like it.

When we have decided that one human life is worth more than another based on this or that characteristic (race, sexual orientation, handicap, sex, whatever), bad things have happened. And the distance between "people like this are better off not being born" to "people like this shouldn't have been born" to "we shouldn't allow people like this to be born."

When you reach that point -- and there are plenty of people who have already reached it with respect to handicapped people -- how far is it to the next step? "People like this shouldn't be using resources that other people need. Giving them medical care, education, access to jobs, access to housing, takes those resources away from the rest of us."

I'm telling you, Tom, we have been down this road before. It let do the Holocaust. It led to the Tuskegee Experiments. It leads to all manner of evil.

And one of the evils is that, as the idea that people with handicaps simply shouldn't be born becomes more prevalent and more accepted, people with handicaps will become even more marginalized, and will have more and more difficulty accessing the resources and support that they need.

I'd love to be wrong, Tom. Can you give me any evidence that I am?

Posted by Laura (# 10) on :

quote:
Originally posted by sharkshooter:
They obviously have a serious problem. I read this today ...

quote:
Sugita Katyal
Reuters
NEW DELHI

NEW DELHI - A 10-year study of babies born in hospitals in the Indian capital Delhi has found the sex ratio unnaturally skewed in families that already have a girl, with the likelihood of a female fetus being aborted increasing the more daughters a family has.

The study recorded that the number of female births was 542 per 1,000 boys if the first child was a girl. If the first two children were girls, there were just 219 girls born for every 1,000 boys.

"Our study showed 50% of female fetuses are eliminated if it's a second girl and after two girls almost three-fourths of the female fetuses are eliminated," said Joe Varghese of the Christian Medical Association, which carried out the study.

Across India, experts say the number of women dropped to 933 for every 1,000 men in 2001, from 941 in 1961, largely because of a long history of female infanticide and, more recently, sex-selective abortions. In 1901, the ratio stood at 972 women for every 1,000 men.

How do you police such a thing?

Well, here's that slippery slope, dealing with abortion for different reasons, but with pretty clear results, if anyone needed an illustration.

This is why my husband and I have seriously considered adopting a girl from India. It breaks my heart to have them so unwanted, poor little things.

[ 05. August 2005, 15:10: Message edited by: Laura ]

Posted by RuthW (# 13) on :

I don't think you can police such a thing as the abortion of unwanted girls. As has already been pointed out, there are ways to abort a child that don't require going through the high-tech medical establishment, and without access to any form of abortion girls will just be abandoned or murdered after they're born. As long as women are perceived to be less valuable than men, girls will be got rid of, somehow. The status of women has to change to fix this problem.

Posted by Laura (# 10) on :

RuthW:

You're absolutely right about that, of course. However, I'm not sure how the status of women will ever change, however, in a society in which there are fewer and fewer of them, because they are being killed out of the population. The studies which show an every-increasing gender imbalance in certain areas tend to demonstrate that it is abortion availability that is resulting in that net decrease. In other words, while murder of baby girls continues, people are far more willing to kill them prenatally than postnatally. And it helps I suspect that it is legal and private to kill them prenatally, but not postnatally.

I assume the same will happen eventually with a lot of even minor defects in the popluation, at least in Western countries. I don't expect that tolerance and help for people with physical and mental disabilities will improve as a result of this.

What can be done about it I don't know, but it's very depressing.

[ 05. August 2005, 16:08: Message edited by: Laura ]

Posted by sharkshooter (# 1589) on :

quote:
Originally posted by Laura:
... In other words, while murder of baby girls continues, people are far more willing to kill them prenatally than postnatally. And it helps I suspect that it is legal and private to kill them prenatally, but not postnatally.

Are we enabling them by allowing ready access to abortion?

quote:
Originally posted by Laura:
I don't expect that tolerance and help for people with physical and mental disabilities will improve as a result of this.

There will just be less of them around.

I am sure sitting on the sidelines is not the right thing to do, but I am at a loss.

Posted by Rat (# 3373) on :

I was particularly depressed to see a documentary about China last night which suggested that scarcity (of girls) isn't raising the status or influence of women. I vaguely thought it might do, supply and demand type of thing.

It looks like in the cities where the status and freedom of women was already higher, single girls are empowered to some extent. But in the country where traditional attitudes persist the response to a shortage of women is not to value them more highly, but kidnap, rape and forced marriage, selling girl children to the highest bidder.

Posted by tclune (# 7959) on :

quote:
Originally posted by josephine:
I'd love to be wrong, Tom. Can you give me any evidence that I am?

Not only am I unable to give you any such evidence, I can't imagine what would count as such. On the other hand, the idea that Nazis killed people it found undesirable doesn't seem to count as a precedent for anything except that human depravity can be boundless. The experimentation in Tuskegee, or the greater excesses in Manchuria and the German concentration camps are certainly horrific tales of what humans can bring themselves to do to each other, but I am hard-pressed to see the analogy.

What I can see is that a woman would be forced to endure an unwanted pregnancy if we were to outlaw abortions. This comandeering of another's body is very serious business, it seems to me, and rather totalitarian. Those who would require this do so in service of a good that they can't possibly define clearly (unless they demand that all fertilized eggs be borne as tribute to their ideology).

It is clear to me that, once a baby is born, another person can take responsibility for the baby without forcing any invasive demands on the woman. Until then, the excess seems to me all on the side of those who demand that their views are determinative for another person's body. The excesses that I worry about spring from that, not an abstract invocation of Nazi Germany.

The excesses in Communist China were horrific for the same reason that outlawing abortion here would be. I can understand this decision procedure, and simply can't get my mind around the more abstract demands. The road to excess, it seems to me, is paved with fuzzy idealism more readily than clear bases for limiting one's invasive authority over another.

--Tom Clune

Posted by sharkshooter (# 1589) on :

quote:
Originally posted by tclune:
...What I can see is that a woman would be forced to endure an unwanted pregnancy if we were to outlaw abortions. This comandeering of another's body is very serious business, it seems to me, and rather totalitarian.

There are many things in life that are "unwanted". Surely we should not simply get rid of them all because they are unwanted.

quote:
Originally posted by tclune:
Until then, the excess seems to me all on the side of those who demand that their views are determinative for another person's body. ...

Your position permits the mother's views to be determinative for the unborn child's body. The only way I can reconcile this is to assume that your argument is that an unborn child is just another part of the mother's body (like an appendix or a liver). Is that what you believe?

Posted by tclune (# 7959) on :

quote:
Originally posted by sharkshooter:
Your position permits the mother's views to be determinative for the unborn child's body. The only way I can reconcile this is to assume that your argument is that an unborn child is just another part of the mother's body (like an appendix or a liver). Is that what you believe?

You are right in all but language as to what I would say with regard to your first sentence -- I believe that the woman (ideally with due consideration to the desires and concerns of the hopefully still-involved man) has final say over whether or not to carry the fetus to term.

Obviously, there is a very large difference between a liver and a fetus. A liver does not have the potential of independent existence some time in the future. I would not necessarily be appalled if there were procedures for providing the woman with an abortion in such a manner that the fetus would become the responsibility of another if the operation were no more invasive than an abortion.

But I can imagine that such a transferring of responsibility would end up being more of a step backward than forward. The excesses that a woman can exhibit relative to an unwanted pregnancy are nothing when compared to the excesses that the state (or even the Church, if you bother looking at the history of these things) can show when it takes responsibility for lives over which it need not be accountable to others for.

--Tom Clune

Posted by Choirboy (# 9659) on :

I hear the trample of ghostly hooves.

Posted by TheLearner (# 9740) on :

quote:
Originally posted by Newman's Own:

quote:
33% of respondents in a survey in Russia indicated that they favoured compulsory termination of pregnancy if testing identified a genetic disorder in the fetus
I find this truly chilling. I have found many comments on this thread regarding eugenics, especially Josephine's, to be excellent expressions of what I myself would hold about the subject. (I had hesitated posting on this thread, because I have no children and my views could be taken as naive as a result. Nonetheless, I do have a chronic disability - and even red hair.)

I have known various mothers of disabled children (Downs syndrome, for example) who had only to take their child anywhere to solicit comments such as "didn't you have the amniocetesis?" The implication that the child should have been aborted, and that this course of action would have been taken had the parents only known the child was disabled, saddens me immensely.

Some of the posts and links, and other information I have read on the topic, upsets me because undesirables are classed by what they may cost the NHS/insurance - eliminate them and there could be so much more money available.

I am no abortion advocate, but could certainly understand parents questioning whether they could deal with having a disabled child. Yet I would hate to see anyone aborting a foetus because of a perception that it would be a strain on society's resources.

Though this was not in relation to abortion, I can remember when those seeking to improve education and other resources for the disabled (of which there was a shocking lack not so many decades ago) promoted this by saying they could become (for example) employed, tax paying members of society. Of course, in many cases this was true, but the same concept can be dangerous taken to any extreme.

I would hate to see the value of life evaluated on the basis of either the potential for 'productivity' or the projected expenses for an individual's medical care. There is no clearcut answer about the Christian approach to a decision on the part of a couple about whether to have a disabled child per se - their motives could be charitable and generous, for example. But a general idea that the value of any person's life (some of you are going to hate me for this - but I cannot refrain from adding that our human nature has been deified in the Incarnation, and everyone has the stuff of the saint within) is qualified by a perceived economic use or related strain seems quite out of accord with the Christian faith.

Newman's Own,

I also found this post chilling. I am a professional caregiver for children and adults with disabilities. Both my wife and I have devoted our (thus far) young lives to caring for and working with individuals with disabilities. They value that they do have in society, in the eyes of their families, and (most especially) in the eyes of God is immeasurable.

Not only am I frightened by the idea that we would somehow make abortion compulsory in the cases of genetic disorders, but I am also terribly disturbed by the fact that we allow mothers to initiate abortion in the case of a fetus that is likely to be born with a disablity. When that occurs, our world has lost the value that is added by a human life that is NOT an accident. Most parents of children with disabilites that I have talked to would certainly prefer that their child had been born without the disability, as much for the sake of the child as for themselves. This, however, does not mean that the life they do live is not of value.

With regard to the idea that parents who do not consider themselves "up to the task" of caring for a disabled child should be permitted to abort. The problem with that line of reasoning is that it allows parents to make a value judgement regarding the potential life of the fetus, and only in regards to their own comfort, skill level, etc. (I do not mean this in the case of severe genetic disorders where the chance of a child surviving are slim to none).

My ideas and opinions on abortion are undergoing some changes currently, but one thing that I feel very strongly about is this: I am against using screening for disabilies to make decision on whether the child will be aborted or not. If the decision rests on the condition of the mother, her positition in life, etc. then the argument "it's her body, let her choose" holds some water. If the decision rests on the condition/health of the fetus, then the argument is moot. The potential mother is not making a decision based on her own body, but on the body of the fetus.

Posted by sharkshooter (# 1589) on :

quote:
Originally posted by Choirboy:
I hear the trample of ghostly hooves.

And I should know better. Sorry.

Posted by Laura (# 10) on :

It's hard, but not impossible, to stay away from that dead horse.

I think the discussion shows an interesting fundamental sticking point for some people. I wouldn't outlaw abortion for any/no reason but in my heart, I'd really like to outlaw it for gender selection purposes. That seems fundamentally evil to me. But one can't outlaw the latter without outlawing the former, as long as it's legal to abort still at the time one may determine the gender.

Posted by Laura (# 10) on :

A friend who lives in a third world country, with whom I've been discussing this issue, says that as far as she's concerned it'd be better if they were able to abort the defective because the society she moves in regards the disabled as such a burden that people who make it to adulthood often commit suicide. That the presence of these conditions in plenty does nothing to alleviate that societal value.

Posted by chukovsky (# 116) on :

Fortunately there are advocates for the disabled (themselves including disabled and non-disabled individuals) in developing countries also (again, have a look at the link I posted above to the interview with the special needs teacher from Uganda).

Posted by Arabella Purity Winterbottom (# 3434) on :

I read this thread before lunch, then went for a long walk. I'd just like to say that its one of the best I've read on the ship, thank you all.

I don't know if I have an opinion. I have a number of friends who live with disabilities, physical, intellectual and mental. They have difficulties I will never have, not the obvious ones like their disabilities, but with the unthinking idiocy of so-called "normal" people.

When other people define you by your disability rather than by knowing you, that's a huge stumbling block. I guess in the end, that might put me in the "no" camp intellectually, since what is being discussed here is defining unborns by their disabilities.

But I simply don't know how I'd feel about it if I became pregnant (aged 42) and was told about a definite disability. I've worked in a psychopaedic hospital, and I've seen elderly mothers with adult disabled children. A lady springs to mind who had two daughters and a son with a very rare chromosomal disorder. The children were in their 40s, tall, strong, aggressive and not able to do the slightest thing for themselves. They were not verbal, lived in wheelchairs and were violent. Mother was in her mid-70s, and was completely worn out. She needed respite care for them because she had broken her hip after her son knocked her over. No respite care was available, so she just left them sitting in their wheelchairs in the middle of the hallway and wheeled herself out. Later on it became apparent that she'd had no life at all because her husband had abandoned her 30 years previously, her family didn't want to know, and because there were three children, most respite places couldn't deal with that many children requiring such a high level of care, let alone once they became adults.

I know its an extreme case, but she had been living in a nightmare ever since her children got bigger than her. Its that kind of story that leaves me wondering what I'd do, though.

Posted by josephine (# 3899) on :

quote:
Originally posted by Arabella Purity Winterbottom:
I know its an extreme case, but she had been living in a nightmare ever since her children got bigger than her. Its that kind of story that leaves me wondering what I'd do, though.

I think this kind of story highlights a huge problem: In this country, families are supposed to be able to care for their own on their own. But when a family member is severely disabled, particularly if the disability is long-term, that expectation is quite simply absurd. An individual family doesn't have the resources to do what needs to be done.

I've never decided whether our society's failure to acknowledge that and to respond appropriately is the result of simple ignorance -- people just don't know what's needed -- or whether it's a result of a self-centeredness that borders on evil. I'll take care of me and mine, you can die in a ditch for all I care.

If we provided for the needs of the severely disabled as we should, then one reason for prenatal euthanasia, to eliminate the overwhelming burden of severe disability from the family, would be moot. You wouldn't have to decide whether the family would be better off without this person, you'd only have to decide whether this person would be better of never being born.

But it disturbs me that prenatal euthanasia is justified based on the hard cases, cases like the one you mention, or anencephaly, but it's used regularly for things that just aren't all that hard. Persons with cleft palate or dwarfism or red hair simply do not place overwhelming burdens on their families. Not because of those characteristics.

So I continue to find it horrifying that we are willing to kill fetuses because they do not meet our standards of perfection. Not because their life, if they lived to be born, would be unbearable, nor because their existence would make the lives of their family members unbearable, but simply because they might not be as attractive or as intelligent as we hoped them to be.

I also find it disturbing that we, as a society, would rather eliminate handicapped people through prenatal euthanasia than fund the care they need. And, although Tom Clune doesn't understand why, I do worry that this attitude will worsen the situation of handicapped people in our society, that people will resent paying for their care when they could just as well have been aborted, that such care as there is will therefore be reduced or eliminated, and, eventually, the rights of handicapped individuals will be eroded to the point that euthanasia for handicapped children and adults will become acceptable.

I don't want that to happen. But I'm afraid that's where we're heading.

Posted by RuthW (# 13) on :

I see your point, josephine, and the notion of screening for red hair is just as appalling now as it was the first time you mentioned it, but I also am troubled by your apparent willingness to say what other people's moral choices in painfully difficult situations ought to be. "We, as a society" haven't made these decisions. They're individual decisions made by the people who might, given the way things are, have to spend the rest of their lives caring for children such as the ones Arabella describes entirely by themselves. Given that they are the ones who will shoulder these burdens, I think it's perfectly fair that they should have a choice in the matter.

I have no intention of raising any child at this point. I'm too old, I'm too alone, and I'm too poor. If I were to become pregnant right now, giving the child up for adoption would probably be my best bet. If I were pregnant and learned that the child was going to be severely disabled, I would give very serious consideration to aborting the baby, depending on what I could find out about the chances that the child would be adopted and how the pregnancy was going in the early stages; a first pregnancy over 40 just might not be worth it. I don't know that I could bring myself to jeopardize my health to give birth to a severely disabled child that no one would want. Maybe if I were a better person I would want such a child. But I'm not. I'm just not.

Posted by Presleyterian (# 1915) on :

What RuthW said, especially in the first paragraph of her post.

As I'm sure we're all aware -- either through first-hand knowledge or simply given the odds in any random group of 10,000 people -- there are people who are reading this thread who have made the devastating choice to have an abortion due to a baby's untreatable birth anomalies. I know of no one who has ever made that decision lightly. And I simply don't feel comfortable telling grief-stricken parents that they and the act they undertook are evil, wrong, and self-centered.

I admire Josephine's certitude on this issue. I just think that a decision of this magnitude should be left in the hands of loving parents -- rather than judges, politicians, or anyone else who doesn't have to live with the consequences.

Posted by ReginaShoe (# 4076) on :

I don't know if this observation will help the discussion any, being an account of just one person (and a strange one at that), but here is my experience:

We did not have amniocentesis for my daughter, born (perfectly healthy) when I was 34. We did have it for my son, born when I was 36 (and he was also perfectly healthy). We were encouraged to do so for my son solely because of my age, but the risks of miscarriage were not presented as so high. Since I had absolutely no intention of aborting a fetus with Downs syndrome or anything at that level or less, perhaps this was stupid of me (though all turned out fine, and they are both sleeping peacefully as I write this).

HOWEVER, I was at the time glad to have done it -- not because of the possibility of aborting a disabled child, which we had no desire to do anyway, but for the opportunity to learn of any disability and prepare for it in advance of the baby's birth. Particularly since we already had one child, if we knew we were expecting a child with serious disabilities, we would want to prepare the big sister for lots of time in the hospital and so forth. Also, we would want to have as much time as possible to research the disease and learn what things we could do from the moment of birth on to help the child cope with it. Finally, in our case, the amnio procedure included an incredibly detailed examination of the baby, which I could follow on the video monitor. This, far from encouraging me to think of it as a "tentative" pregnancy, made it seem several orders of magnitude more real.

So maybe I'm an oddball, but I don't think you can totally place the blame on amniocentesis for parents who think of their pregnancy as tentative. It certainly didn't have that effect on us!

Posted by josephine (# 3899) on :

quote:
Originally posted by RuthW:
I also am troubled by your apparent willingness to say what other people's moral choices in painfully difficult situations ought to be.

I almost decided not to post on this thread because I know my feelings on this topic are so strong as to be, perhaps, not suitable for airing in public. It's just difficult to engage in a robust discussion of this topic without saying things that might hurt or offend. As Regina points out, people who read this may have made this decision themselves, and reading my thoughts on the matter might be painful. In normal polite conversations with relative strangers, we don't address painful topics, or intensely personal topics, or topics where there is the potential for profound differences of opinion at such a gut-wrenching level.

But, honestly, I think this topic needs to be discussed openly. And I think all points need to be covered, from Tom Clune's to mine.

quote:
"We, as a society" haven't made these decisions. They're individual decisions made by the people who might, given the way things are, have to spend the rest of their lives caring for children such as the ones Arabella describes entirely by themselves.

But the cumulative effect of a lot of individual decisions represents what we as a society want and what we value. The people Arabella talked about are in the position they are, not solely because of the decisions they made, but because of decisions the rest of us made as well.

Each time one of us votes, it's an individual decision. But A whole lot of individual decisions have resulted in the collective decision that it's better to have lower taxes than to have the sort of social and medical services that would have allowed the woman's children to be cared for properly. A whole lot of individual decisions have resulted in the collective decision that it's too difficult to accommodate disabled people at school, at work, and in society.

And when we said, back in the 1970s, that we really did want to accommodate disabled people, to integrate them in society (through the individual decisions of the people we'd elected to represent us), we gave ourselves a collective pat on the back and thought what nice people we were. And then we found out that it cost money and inconvenienced us to accommodate disabled people.

I've heard the grumbling when a bus has to load or unload someone on a wheelchair. It takes too long. We shouldn't have to wait for them. I know people who believe that it isn't fair or right for schools to provide accommodations or services for children with disabilities. It's not fair to the other kids, who don't get those accommodations; it's not fair to the people who pay taxes. If you're going to have a disabled child, you should deal with it yourself.

Granted, that's the expressed opinion of individuals. But when it is repeated by many individuals, and is considered a valid opinion by many, many more, then it's not just an individual opinion. It is an expression of what we as a society find acceptable.

We no longer tolerate people saying their kids shouldn't have to be in class with blacks or Mexicans, even though there are still individuals who feel that way. The cumulative effect of a lot of individual opinions has changed our society.

quote:
Given that they are the ones who will shoulder these burdens, I think it's perfectly fair that they should have a choice in the matter.

I wouldn't disagree. I know that people have to consider, not just the welfare of one child, but how that one child's needs affect them and their entire family. Given the way things are now, if they simply don't have the resources to provide the care the child needs, then prenatal euthanasia might be a valid option. It might be the only option they feel they have, the only one that allows them to do the best they can for everyone affected by the decision.

I understand and share Presleyterian's concern for those who suffer because they've already made a painful decision to abort a child they would have wanted had the child, and the situation, been different. But what about the pain suffered by people who know that most of the people they live with and work with and ride transit with would have preferred they had never been born? That's real pain, too.

Maybe I'm just crazy. But I think this is something that we, as a society, ought to face up to. It ought to be discussed. We ought to decide, collectively, and openly, if we want to be the sort of society that aborts 90% of the fetuses with Down syndrome. Maybe we do. But I don't think that's true. I hope it's not. And I would hope that, if the debate were engaged in publicly, it would have an effect on individual decisions such that caring for a disabled child would no longer be totally unthinkable.

Posted by Laura (# 10) on :

quote:
Originally posted by Presleyterian:
I simply don't feel comfortable telling grief-stricken parents that they and the act they undertook are evil, wrong, and self-centered.

Right. But we have to be able to have these discussions -- the whole point of my OP was that this is essentially a silent movement, going on without public debate, which does affect real lives and also says something (what, exactly, is obviously subject to debate) about that society and what it values. That the subject may cause painful reflection is no reason not to discuss it here, where we touch on all kinds of difficult topics. Down in DH there's a thread where people who've had abortions (and statistically, we know there are probably several on the boards) can hear themselves described as murderers and mortal sinners. It doesn't get much more judgmental than that, but we have to be able to discuss these things.

Just having this debate here has shaped my own views on a decision I myself am facing within the next two weeks - whether to choose to have amniocentesis or not in this specific pregnancy. It's a big deal to me. The reason I started this thread was that I asked a lot of people IRL about prenatal testing decisions and nobody seemed to think it was a big deal and they all pretty much agreed that the point was to eliminate really disabled kids. And these are really lovely thoughtful people. Like the lovely thoughtful people here.

I still have no idea what I'm going to do, but I do incline to the view that amniocentesis is valuable as a diagnostic tool, for information gathering. I'm big into information. So I don't object to prenatal testing. But I'm uncomfortable with all the assumptions that seem to have come to inhere in the prenatal testing choices.

Posted by Laura (# 10) on :

quote:
Originally posted by RuthW:
They're individual decisions made by the people who might, given the way things are, have to spend the rest of their lives caring for children such as the ones Arabella describes entirely by themselves. Given that they are the ones who will shoulder these burdens, I think it's perfectly fair that they should have a choice in the matter.

I think this is important, too. In a society such as ours, however lamentable that is, where to have a severely disabled child would mean one spouse giving up everything to be caregiver and to completely reconfigure other lives around supporting a severely disabled child, maybe for sixty years, with no real help to be expected from the community, except maybe some from the church, I certainly wouldn't say that it's reasonable to expect a couple to be noble enough to face that as if it were not a life-ruining event, as it was in the case of the poor woman APW described. I'm amazed she didn't kill herself. I probably would have.

Posted by chukovsky (# 116) on :

Given the risks are: vast majority of cases everything's fine, and in approximately equal numbers the outcome is an indication of a disorder, or a miscarriage, I wonder what people's choice may be based on their experience of either disorder or miscarriage? I'm obviously biased one way and I think I already was, but I know the miscarriage has coloured my view too.

I also know a couple of people who have one child with a disorder (in one case where it couldn't have been diagnosed prenatally) and their first child's problems have given them serious thought about whether to have any more children.

I guess my first thought in such a circumstance would be that, since one of the reasons people have children is so that they have support in their old age, increasingly so as society in general gets less supportive, then you have an extra reason to have more children since you'll need extra support in your old age. If your child had a life-threatening disorder, the reasoning might be different but the outcome would be the same.

But then I suppose others might reason differently: having a child with a disorder already, you don't need any more hard work now or when you are elderly, and you don't need any more heartbreak when your child dies young.

Posted by Arabella Purity Winterbottom (# 3434) on :

I was chaplain for a conference a few years ago. The conference was for disabled Christians of all kinds. I felt very privileged to be a part of it, but it was very obvious to me that disability is not something the church deals with well. The stories that were shared there made me fume and I ended up thoroughly politicised. The "they're such happy people" myth couldn't have been knocked on the head harder - there was a tremendous amount of anger, at the same time as there was hilarity, warmth and enthusiasm. You haven't seen anything until you've been part of a Maori powhiri with 30 wheelchairs, 5 guide dogs, any number of mobility aids and assorted clergy in full panoply.

In case you're wondering why I was the chaplain, the conference included mental illness as a disability - one of the keynote speakers was a stunning woman who had been brought to a complete stop by severe depression, as had I in the not too distant past.

Posted by josephine (# 3899) on :

The local NPR morning show this morning was about crime and imprisonment. I only heard the first few minutes of it, but one of the speakers argued that crime over the past however many years is down in part because of abortion. The children of young black women disproportionately become criminals. Young black women get a disproportionate share of abortions. Connect the dots, and abortion is a good thing for society, because it eliminates black men who will grow up to be criminals before they are even born.

Is this also prenatal euthanasia? Or has it crossed the line to where we can call it eugenics? Does the fact that the young black women aren't trying to eliminate criminals from our midst have anything to do with what we call it?

I have known blacks that believed that Planned Parenthood and abortion rights in general was eugenic in intent -- they said you don't have to drop by many abortion clinics to figure out that abortions are white doctors killing black babies.

Is the abortion of fetuses with handicaps, or the advocacy or support of the same, any different from the abortion of blacks fetuses, or the advocacy or support of that?

Posted by Laura (# 10) on :

Mad Geo started a thread about that study some time back. I think the person who did the study made the point that this didn't mean abortion is a good thing. He was simply noting the association. One could draw other conclusions as well. For example, if poor inner city girls weren't having sex at all until after they finished high school diplomas and not without a husband, and the community supported that, that would reduce the crime rate pretty dramatically as well, too.

Not that I don't take your point. But is bringing a child into a pointless life of poverty, drug abuse and early death pretty bad? Arguably so, or certainly as arguably so as not bringing a severely disabled child into the world.

Certain people in the black community have been arguing for years that pushing abortion services or implanted contraception in the inner city was a form of genocide.

Posted by Laura (# 10) on :

quote:
Originally posted by josephine:
Is the abortion of fetuses with handicaps, or the advocacy or support of the same, any different from the abortion of blacks fetuses, or the advocacy or support of that?

I do think it's different -- a young black woman aborting is probably doing it for similar reasons to any woman who doesn't want a baby but is pregnant. Not because it is black. A person aborting a disabled child is aborting it because it is disabled and would otherwise be wanted.

Posted by josephine (# 3899) on :

quote:
Originally posted by Laura:
I do think it's different -- a young black woman aborting is probably doing it for similar reasons to any woman who doesn't want a baby but is pregnant. Not because it is black. A person aborting a disabled child is aborting it because it is disabled and would otherwise be wanted.

You're right. The young black woman isn't aborting the fetus because it is black.

But that brings up another thought. The woman aborting the disabled child is probably a prosperous white woman. Poor black women don't generally have access to amniocentesis and other screening tests.

So will prenatal euthanasia result in disabilities being restricted largely to the poor? The educated, employed, and insured will get screening and prenatal euthanasia. The poor and uninsured will continue to have children with Down syndrome and cleft palate and whatever else the rich no longer have.

If that's the case, what would that mean?

Posted by Laura (# 10) on :

quote:
Originally posted by josephine:
So will prenatal euthanasia result in disabilities being restricted largely to the poor? The educated, employed, and insured will get screening and prenatal euthanasia.

Oh, yes, definitely. And the third world, as I pointed out above. There are already tons of diseases that really only the poor suffer from (take malnutrition and related diseases like ricketts, for example). These will just be added to the list of things for poor people.

Posted by Foolhearty (# 6196) on :

And given that it's reasonably likely that children of the prosperous are planned, whereas children of the poor/disenfranchised are likely to be unplanned, what does that mean?

I have read in several places that some 50% of all pregnanices are unplanned. I haven't read anywhere just how this breaks down in terms of economic class.

Since (at least in the US) this seems to be coinciding with a gradual detachment from the idea of providing much by way of social services for anyone at a disadvantage, I wonder what kind of future we face.

Posted by Paige (# 2261) on :

Apologies in advance for the long post....

I read Barbara Katz Rothman's book when I was in my late 20s, and it very nearly made me decide not to have children.

I wouldn't allow myself to get pregnant until I had answered the question of "Would you terminate if something was wrong?"

Ultimately, I decided that I wouldn't terminate for any reason---and that I wouldn't want a joyful pregnancy marred by the knowledge that something was very wrong. So I didn't have any of the tests, in either of the two pregnancies I carried to term.

What shocked me was the cavalier way that medical personnel approached those tests. It was assumed that your would take the alpha-fetoprotein test (AFP), and no one ever explained that it was a "gateway" test. Taking it means that you can be opening a door to all kinds of other tests---and to the possibility of hard issues and wrenching decisions. But no one ever explained that. They just handed you the lab form and told you they would schedule you for it---they were all a bit shocked when I refused to take it.

There is a lot of pressure in certain places to terminate if you get a "bad" amnio. Research hospitals are the worst---the assumption is that no rational person would want a "defective" baby. When you have just been informed that your baby has Down's or some other problem, and you are at your most vulnerable, to have doctors asking you WHEN you are going to schedule your termination (not "if") can make it nearly impossible to make another choice, unless you have very strong religious objections to abortion.

Having said all of that, I am very sympathetic to those who have had to make the decision to terminate. I had one friend whose daughter was anencephalic, and another whose daughter had both Down's and another condition where her organs were growing outside her body. There was no hope for either of these poor babies, which makes it different than someone who aborts for Down's or spina bifida alone---but having watched the anguish of parents who chose to terminate a wanted pregnancy, I agree with Ruth that no one has the right to sit in judgment of them. I can only trust that God knows their hearts and that grace and mercy will flow to where it is needed.

We can, and should, however, address the societal pressures to create perfect babies and the rabid individualism that leads us to expect only nuclear families to take care of those with disabilities. This has been a wonderful conversation for that---and I appreciate Laura and Josephine's eloquent posts.

Posted by chukovsky (# 116) on :

quote:
Originally posted by josephine:
So will prenatal euthanasia result in disabilities being restricted largely to the poor? The educated, employed, and insured will get screening and prenatal euthanasia. The poor and uninsured will continue to have children with Down syndrome and cleft palate and whatever else the rich no longer have.

I'd say yes, apart from the smaller group of couples who have had great difficulty getting pregnant and feel this may be their last chance to have children - who may well be older and better off, having had the resources to avail themselves of assisted reproduction.

It is of course a bit different in the UK, where in some areas all women, and in other areas all women over 35, are offered screening for free. But an educated/well-off woman under 35 who wants it might get private screening.

Posted by Laura (# 10) on :

A good example of the general societal reaction to differences and how it plays out in the expectation of perfection in children is in a syndicated advice column that appears in our paper, and also I think in some others:

Tell Me About It (Wednesday, August 10)

(free registration required)

An excerpt of the relevant question is:

quote:
My younger son is having some physical and developmental problems, and I'm just not dealing well with it.

I can't stop worrying, and don't enjoy being with other parents and kids because all I see is what he's not able to do yet. I'm taking him to physical and educational therapy twice a week and I hate every minute of it.

I just can't get past that I don't want this (and I can't tell you how evil, selfish and horrible I feel to say that) and that it's not fair. How can I stop feeling bad for myself and start being positive, supportive and helpful to my son instead?

The response given to this question is pretty good, but I think a lot of people would probably abort if told in advance about this sort of thing as well -- developmental problems, I mean. In fact, I find that I'd be far more sympathetic (I'm talking about gut-level stuff here) to the decision to terminate for severe retardation or severe autism or severe schizophrenia (if they could identify these genetically by amnio) than for any physical defect, because these conditions far more affect a kid's ability to be and function in a normal human social world than almost any physical defect. So our own prejudices feed into this heavily, don't they? So pre-natal counseling can't even identify the things that worry a lot of people the most, even while supporting an environment in which tolerance for any difference is waning. It's a terrible Catch - 22, isn't it?

[ 10. August 2005, 15:02: Message edited by: Laura ]

Posted by josephine (# 3899) on :

quote:
Originally posted by Laura:
The response given to this question is pretty good, but I think a lot of people would probably abort if told in advance about this sort of thing as well -- developmental problems, I mean.

I'm sure you're right. But think about the implications. I'll just use autism as an example, because that's what I'm most familiar with.

We know that autism is a complex multi-gene trait. It isn't an either/or diagnosis like Down Syndrome. It comes in flavors and shades.

Families that include people with an autism spectrum diagnosis also include far more than their share of engineers, research scientists, and other technical people. Many people in technical professions could reasonably be described as just a little bit autistic. They aren't clinically diagnosable, but they clearly have tendencies in that direction. They presumably have a few of the autism genes, but expressed in a way that allows them to function fairly normally.

What affects the expression of those genes? Probably a combination of environment, IQ, and what particular combination of autism genes got sorted out to you.

So if people are really afraid of having to rear an autistic child, and if we developed screening tools so that we could abort 90% of people with autism, as we currently abort 90% of people with Down Syndrome, what would that mean for the rest of us?

Even if the test were relatively sophisticated, it would undoubtedly identify people like Temple Grandin as severely autistic. I'm sure it was no picnic for her parents when she was a child. She was difficult and expensive to raise. But with intense, appropriate intervention, she grew up into an adult who has made amazing contributions to our society. Do we really want a world where we don't have people like Temple?

Or, more to the point for me, do we want a world where we don't have people like my father, or like my two younger sons? My father grew up in a world where it was easier to be a high-functioning autistic person. He knew that he was different from other people, but didn't know how or why until my sons were diagnosed. Then he read up on their diagnosis, and recognized himself.

He was a product safety engineer. Among other things, he wrote the standards and invented the equipment used to test school furniture when the safety of school furniture first became an issue. His contribution to his field, and to the rest of us, was enormous.

The world my sons are living in is not as kind to eccentric people. It's a problem for them, for me, for Alex. But do we want to solve this problem by eliminating people like them? Or by doing whatever is necessary so they can live in this world?

Hans Asperger, the German physician who first described Asperger Syndrome, chose the latter option. He was convinced that the Nazis would soon start rounding up his boys and killing them. The boys at the residential facility where he worked were difficult boys by anyone's defintion. Intellectually, they were fine. But they didn't fit in, they could be violent and threatening one moment, charming the next. They had intellectual fixations, perseverations. When they had a problem to solve, they wouldn't let go, whether the problem made any sense to anyone else or not. He didn't really understand them. But he loved them. So he described them, and described their value to society. He published papers about them, hoping that by making them more familiar, by pointing out the advantages of their eccentricities, if their eccentricities were properly managed, he could save them from the fate of other disabled persons in Germany.

He did.

But what are we going to do?

Posted by chukovsky (# 116) on :

Incidentally, although it's possible to determine if a child has Down Syndrome prenatally, it is also a disorder that's very hard to predict: only about 15% of adults with the syndrome would be INcapable of independent living/work given appropriate training and education, but an either/or test doesn't tell you which. Many children with DS can perform in the low normal range at school.

(As I'm speaking at a conference on DS in a few weeks' time, I thought l'd better inform myself a bit. I should add that the conference is on DS but my talk is on some research with other children!)

Posted by josephine (# 3899) on :

So we're aborting 90% of the fetuses diagosed with Down Syndrome, when 85% of them could function as adults in the normal range?

I didn't know that. Do the doctors who do the screening know that?

Posted by chukovsky (# 116) on :

Have a look at the survey Adeodatus linked to: when the syndrome was accurately described with its presenting features, rather than just labelled "a serious condition", far fewer of the ethicists supported prenatal testing and termination. There is a perception of the syndrome as very serious: only 15% need "a much higher level of daily assistance" according to the document below.

Because of improved therapies and education (primarily due to mainstreaming), the outlook for children and adults with DS is so much better than it was in the past. See here, and the pdf file you can download from there, for more information. Particularly telling is the description of the author's daughter: because she is in her 30s, when she was a baby and a child, almost nothing was expected of her. She didn't walk until she was 4 1/2 and she couldn't read or identify coins when she left school. However, she is now working and living independently. She needs help with some things, but not an overwhelming amount of help.

Nowadays, children with DS are expected much more to achieve the same things as other children and, surprise surprise, they do. I doubt whether any parents with screening decisions to be made are given that leaflet, though.

[ 10. August 2005, 19:59: Message edited by: chukovsky ]

Posted by Foolhearty (# 6196) on :

I have no statistics to offer, only experience working in the field of developmental services.

I think that 85% figure (of people with Down Syndrome functioning in the normal range) seems high.

The state I live in has a categorical state definition of "development disability" (annoyingly enough, as the federal definition was originally coined to obviate categories altogether and instead make it possible for persons with disabilities to become eligible for assistance and services on the basis of functional ability). One of the categories is Down Syndrome.

I have known people with DS to go to college, but this is quite rare. Most people with DS now are mainstreamed in school in my state, but the majority of people I see continue to need fairly substantial services and assistance, and this is due to the disability rather than to barriers resulting from lack of societal acceptance.

The physical anomalies accompanying DS present real problems. An enlarged tongue/small jaw can make communication through speech very difficult, and most "non-disabled" people do not learn Sign. So even though some folks with DS Sign well, they still are cut off from their communities. The heart difficulties often associated with DS can be a barrier to getting a driver's license even where learning differences do not pose issues.

And supported employment -- and this in a state which was among SEP pioneers -- continues to offer placement in (I'm sorry, but this is a hotbutton issue for me) Food'n'Filth industries, which (A) do not offer a valued place in society to the employee, and (B) do not offer anything like a living wage - even to those supporting the employee with the disability.

I am not saying that this means people with DS should be aborted. But I also think that at least half of all the people I've known with DS require fairly substantial amounts of assistance throughout the lifespan.

In addition, people with DS often experience a shortened lifespan with heightened levels of disability toward the end, and have a significantly higher-than-average incidence of Alzheimer's and dementia as they age.

Posted by Arabella Purity Winterbottom (# 3434) on :

Yes, I thought that figure was very high, too. The high school my partner teaches at has a special needs unit which is usually about half girls with Downs Syndrome. In the 17 years we've been associated with the school, not one of the DS girls has done any exam level study (Years 11-13), and I'm fairly sure there aren't too many who have been fully mainstreamed at lower levels of high school. And that's a school that busts a gut to mainstream.

I did come across a very engaging young man with DS when I visited the library of the local CCS (Crippled Children's Society, now only known by its initials due to terminology moving on). He was quite numerate and moderately literate and knew his way around the library system a real treat. The librarian told me that he needed a bit of supervision but could do most of the usual tasks of a library circulation assistant, and was also passable at copy-cataloguing.

Our local bus company employs a number of intellectually disabled adults to clean buses. Likewise the local police for their cars. From what I gather the employers make a big fuss of these employees and give them lots and lots of job satisfaction. We have a group house two doors down from our house and the people there work for the bus company and love it. They get to wear the company uniforms and get free travel on the buses, they know all the bus drivers, and from the discussions I overhear think themselves equal to kings and queens.

Posted by Arabella Purity Winterbottom (# 3434) on :

This thread has got me thinking about something else that made me extremely angry at the time. One of my cousins, who is about 15 years younger than me, has Downs syndrome, and has the Downs' look very strongly. When she was going through adolescence, her parents decided to put her through endless plastic surgery to make her look more normal. Her father told us it was so that she could marry a normal man.

Uh? She was not a high functioning person - her general social development was stuck around the 7-8-year-old level - and she typified the Downs stereotype of being a very happy, loving person. My mother and I were horrified that her parents felt that there was any kind of possibility of her marrying a "normal" man - it seemed likely to us that any man wanting to marry her would be very not normal.

But then the whole idea of the plastic surgery was abhorrent in the first place. And it certainly didn't change her intellect or social functioning.

Posted by chukovsky (# 116) on :

Have a look at the information I linked to. I didn't say 85% functioning in the normal range (which, in the UK, would not be college anyway - about 30% go to university here), I said 85% living or working independently - as the information says, that can include sheltered accommodation or some support in regular accommodation or work, but the idea that the vast majority of people with DS need continuous care and can't do anything for themselves is wrong.

Some people with DS are in the lower normal range at school. Many non-disabled children get no paper qualifications but still manage to get a job.

Most adults with DS have learned to speak. More could learn to speak - the functioning of adults with DS in current-day society is not a good representation of the potential of children with DS. Most adults went to special schools where they were not expected to learn very much. Most children now go to mainstream schools where they learn a lot more than children did in the past. Yes, the lifespan is shortened but by about 20-30 years - not by about 50 years as for children with CF or sickle cell - it's about the same shortening as with Type 2 diabetes, also genetic, and also leading to physical dependency and risk of dementia (through multiple small strokes) in later life.

Although I don't particularly agree with surgery for aesthetic reasons, there are good arguments for reducing tongue size to make speech easier: not sure which side the research has come down on in the end, as I say it's not my speciality.

Posted by Foolhearty (# 6196) on :

quote:
Originally posted by chukovsky:
Have a look at the information I linked to. I didn't say 85% functioning in the normal range (which, in the UK, would not be college anyway - about 30% go to university here), I said 85% living or working independently - as the information says, that can include sheltered accommodation or some support in regular accommodation or work, but the idea that the vast majority of people with DS need continuous care and can't do anything for themselves is wrong.

Some people with DS are in the lower normal range at school. Many non-disabled children get no paper qualifications but still manage to get a job.

Most adults with DS have learned to speak. More could learn to speak - the functioning of adults with DS in current-day society is not a good representation of the potential of children with DS. Most adults went to special schools where they were not expected to learn very much. Most children now go to mainstream schools where they learn a lot more than children did in the past. Yes, the lifespan is shortened but by about 20-30 years - not by about 50 years as for children with CF or sickle cell - it's about the same shortening as with Type 2 diabetes, also genetic, and also leading to physical dependency and risk of dementia (through multiple small strokes) in later life.

Although I don't particularly agree with surgery for aesthetic reasons, there are good arguments for reducing tongue size to make speech easier: not sure which side the research has come down on in the end, as I say it's not my speciality.

Thanks for the clarification, chukovsky. I agree with this statement: "the idea that the vast majority of people with DS need continuous care and can't do anything for themselves is wrong."

I should add, though (and all of my experience with this so-called "population" has been within the border of my home state) that mainstreaming has been going on here for a generation. Very few of the DS folks I've known were ever in special schools or even in special classes (the few who have were older individuals). This state stopped institutionalizing people with disabilities in the 1970s and officially closed its only public institution in 1990, once the last few "inmates" had gone to live in community settings. This is a rural state; few school districts could ever afford to set up separate classes for kids with disabilities.

I know this is tangential to the discussion, but thought the context behind my remarks above was relevant. Few people with DS need continual care; most can do a great deal for themselves with good training and support. But it's also true that most require at least some support, and that includes support with employment, managing life activities like budgeting and cooking, and sometimes with decision-making.

As a result, part of the decision-making process for someone undergoing prenatal testing for potential disability in the fetus has to be a consideration of what commitment of time, energies, and other resources the parents can make to this child's life, and possibly, what commitment will be asked of the larger community.

The crux of this issue, I believe, is that child-bearing has in fact, quietly and with no fanfare, become a real, practical choice.

For most of womankind throughout history, this has not been true. (It may not the case for many Third World women even now.)

And because it is now a choice, the relationship between the parent and the child-to-be is not the only change we face. We also face changes in the relationship between family and community (where communities provide support to children and adults with significant levels of disability).

Attending school district meetings in small towns in my state can be a shocking experience, as neighbors begin verbally mauling one another about the costs involved in educating one family's child or children. It is horrifying to see how thin the veneer of "community" sometimes is.

Sorry for the long post.

Posted by Arabella Purity Winterbottom (# 3434) on :

Sorry chukovsky, I understand what you're getting at, now, and I agree.

My cousin could talk perfectly OK - in fact, it was hard to get her to be quiet! No, the surgery was on her face, to make her look less like a person with Downs Syndrome. It didn't work, and what we were worried about was that a nice, very happy, contented person was being told that their face wasn't good enough. She got completely hung up about her looks.

Posted by Rat (# 3373) on :

There was an article on the radio this morning about pre-pregnancy selection. Couples who are capable of unaided conception but who know they carry a gene for a serious condition can opt for an 'in vitro' process where embryos are created then screened for the faulty gene. Only embryos without the gene are implanted into the woman's womb.

Do people feel the same about this as about prenatal screening\euthanasia? Is it eugenic?

I'm not sure how I feel - I wouldn't blame someone for taking this route, but I just am not comfortable with it. It was one of the options open to me had my dad's gene been identifable, but I thought at the time I would not have been able to reconcile myself to the process. I'm not entirely sure why, it just doesn't seem right. I think it is the creation and destruction aspect - if there was a way of ensure only healthy embryos were conceived I doubt if I'd feel the same discomfort.

This has been a standard procecedure for some time for some serious, inevitable diseases. This morning's discussion was about the ethical implications of extending this process to screen for genes for which the bad outcome is not guaranteed. The example used was the breast cancer gene which greatly increases the risk of the disease, but does not make it inevitable. It is now possible to screen for conditions like this.

Again, this makes me very uncomfortable. I can see why someone with the gene might want to do it, but it just doesn't seem right to me in my guts.

Posted by chukovsky (# 116) on :

I'm not sure where I stand on this, Rat, but this article talks about this: preimplantation genetic diagnosis. It also mentions preconception diagnosis/selective conception, but says that it would probably be practical only for gender selection.

I am not entirely sure about gender selection for the purposes of completing a family/handing on the family name/avoiding paying dowry/bride price*, but it seems like a much more ethical way of avoiding handing down a sex-linked fatal illness. Not sure about sex-linked traits that are non-fatal, though.

*these work in the opposite way so girls are more valuable in some societies whereas boys are in others.

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