Scientific proof that we live in a warmer and more caring universe
Ben Goldacre
The Guardian
Saturday November 29 2008
As usual, it’s not Watergate, it’s just slightly irritating. “Down’s births increase in a caring Britain”, said the Times: “More babies are being born with Down’s syndrome as parents feel increasingly that society is a more welcoming place for children with the condition.” That’s beautiful. “More mothers are choosing to keep their babies when diagnosed with Down’s Syndrome” said the Mail. “Parents appear to be more willing to bring a child with Down’s syndrome into the world because British society has become increasingly accepting of the genetic abnormality” said the Independent. “Children’s quality of life is better and acceptance has risen”, said The Mirror.
Their quoted source was no less impeccable than a BBC Radio 4 documentary presented by Felicity Finch (her what plays Ruth Archer), broadcast on Monday. “The number of babies with down syndrome has steadly fallen, that is until today, when for the first time ever that number is higher than before, when testing was introduced.” I see. “I’m keen to find out why more parents are making this decision.” They’re not. “I was so intrigued by these figures that I’ve been following some parents to find out what lies behind their choice.” Felicity. Wait a second. The entire founding premise of your entire 27 minute documentary is wrong.
There has indeed been a 4% increase in Down’s syndrome live births in England and Wales from 1989 to 2006 (717 and 749 affected births in the two years respectively). However, since 1989 there has also been a far greater increase in the number of Down syndrome foetuses created in the first place, because people are getting pregnant much later in life.
What causes Down syndrome? We don’t really know, but maternal age is the only well-recognised association. Your risk of a Down syndrome pregnancy below the age of 25 is about 1 in 1600. This rises to about 1 in 340 at 35, and 1 in 40 at the age of 43. In 1989 6% of pregnant women were over 35 years of age. By 2006 it was 15%.
The National Down Syndrome Cytogenetic Register holds probably the largest single dataset on Down syndrome, with over 17,000 anonymous records collected since 1989, and one of the most reliable resources in the search for patterns and possible causal factors. They have calculated that if you account for the increase in the age at which people are becoming pregnant, the number of Down’s Syndrome live births in the UK would have increased from 1989 to 2006: not by 4%, but from 717 to an estimated 1454, if screening and subsequent terminations had not been available.
Except, of course, antenatal screening is widely available, it is widely taken up, and contrary to what every newspaper told you this week, it is widely acted upon. More than 9 out of ten women who have an antenatal diagnosis of Down’s syndrome decide to have a termination of the pregnancy. This proportion has not changed since 1989. This is the “decisions” that Felicity Finch, Radio 4, the Mail, the Times, the Mirror, and the rest are claiming more parents are taking: to carry on with a Down syndrome pregnancy. This is what they are taking as evidence of a more caring society. But the figure has not changed.
Crass and insensitive moral reasoning helps nobody. If I terminate a Down syndrome pregnancy, is that proof that society is not a warm caring place, and that I am not a warm caring person? For many parents the decision to terminate will be a difficult and upsetting one, especially later in life, and stories like this make a pretty challenging backdrop for making it. This would have been true even if their figures had been correct, but as is so often the case, for those with spare flesh to wave at strangers, their facts and figures are simply incorrect.
The National Down Syndrome Cytogenetic Register felt obliged to issue a thorough clarification. The thoroughly brilliant “Behind the Headlines” service on the NHS Choices website took the story to pieces, as they so often do, in their daily round up of the real evidence behind the health news (disclosure: I had a trivially tiny hand in helping to set this service up).
Everybody ignored them, nobody has clarified, and “Born With Down’s” remains Radio 4’s “Choice of the Day” on the Radio 4 website.
Please send your bad science to ben@badscience.net
eyalbd said,
November 29, 2008 at 9:39 am
Down’s Syndrome is caused by a trisomy, complete or partial, of chromosome 21.
The development of the egg is only completed upon fertilization by the sperm. until then it is stuck in the middle of metaphase II. Meaning - the ovum still has two copies of every chromosome. Only when the sperm enters the ovum, the two copies are separated (and one copy is excised) and meiosis II is completed.
The cause of Down’s Syndrome is usually nondisjunction - the chromosomes don’t seperate properly in division, and the egg is left with two maternal copies of chromosome 21 instead of one.
Now, why specifically the nondisjunction is more prevalent in older women, I don’t know. Neither do I know which gene and what biochemical pathway causes which symptom. I don’t know if it’s known.
But saying nobody knows what causes Down’s Syndrome and that maternal age is the only association is, I think, misleading.
John Smith said,
November 29, 2008 at 10:28 am
Excellent piece.
For a split second I put myself in the shoes of those parents with a DS foetus, and I must admit that I couldn’t see much beyond terrible and agonizing heartache. It must be so hard to make a decision, and my heart goes out to those people (of course, there’s another argument for you to chew over, Ben — Is ignorance bliss? Is scientific ignorance a luxury? Sounds like it in this case.)
You could say that we expect more of the BBC than to broadcast poor quality stuff like this, but that’s what nearly everybody is saying about the corporation nowadays. I just wish it wasn’t representatives of our particular generation who, after a hundred or so years, are finally destroying the BBC, largely through incompetence.
wewillfixit said,
November 29, 2008 at 10:33 am
Actually there is a greater percentage of mothers choosing to keep Down Syndrome babies. This effect is probably smaller than the effect of more Down Syndrome babies because of older parents, but it is still there. See the figures presented here:
http://www.badscience.net/forum/viewtopic.php?f=3&t=6816#p124821
When testing was introduced, percentages of DS pregnancies terminated rose to about 50% and have since declined to about 40%. I don’t know if this is to do with increased acceptance of people with DS, or other factors in the last few years.
wewillfixit said,
November 29, 2008 at 10:35 am
Ignore last post - didn’t read properly.
wewillfixit said,
November 29, 2008 at 10:45 am
The figures now suggest to me that there must have been a decrease in women choosing prenatal testing, or am I completely wrong? If the % of prenatal dagnosis leading to termination has stayed the same, but the % of total DS dagnoses leading to termination has gone down, then there must be more cases of DS that are only diagnosed after birth.
I can understand this - I chose not to have the screening test as I was sure I would keep a DS baby, and knowing the potential diagnosis before birth wasn’t that important to me given that there is a small increased risk of miscarriage following amnio or CVS.
julie oakley said,
November 29, 2008 at 10:58 am
I love your column but in the interests of scientific accuracy (and to reassure older parents) could you please show the other equally accurate but far less worrying statistics about the possibility of having a Downs syndrome child at particular ages. ie percentages.
wewillfixit said,
November 29, 2008 at 11:07 am
Julie, here’s a table with the risk of DS by maternal age:
http://www.leeds.ac.uk/lass/screening%20for%20Down’s.htm
CDavis said,
November 29, 2008 at 11:59 am
Oh jeezers…
Is it just me, or is a great deal of thinking about this issue predicated on the notion that ‘Downs symdrome babies’ grow into ‘Downs syndrome children’, and then somehow disappear off the radar?
What happens when the - predominantly older - parents are no longer around to exercise their improved caring and warmth?
emen said,
November 29, 2008 at 12:04 pm
Julie, as far as I know the percentages in the post are accurate.
But look at it this way: at the age of 43, your chances of NOT having a baby with Downs Syndrome is 97.5%. That is pretty high, I think.
The INCREASE is dramatic, and because this is an abnormality that CAN be screened, it gets more attention.
The chances of having an early miscarriage in first pregnancies is an estimated 1 in 3, but there is nothing you can do about it, so you don’t hear that very often.
It reminds me (a bit) of a contraception issue. The word “copper coil” often gets associated with unbearably strong periods. But when you look at the actual numbers, it’s something like 5% of women who have to have it removed because of that - others are OK with it, it’s just that they don’t walk around telling people “You know what, I have a coil. And it’s good.”
frankbuckley said,
November 29, 2008 at 12:24 pm
Ben -
In pursuit of good science, perhaps you should also pay more attention to your statistics.
Annual birth numbers tells us little. You need to look at live births of babies who have Down syndrome as a proportion of all live births.
The 2006 NDSCR data you quote is clearly described as provisional and contains a large proportion of ‘unknown outcomes’ (following a recorded prenatal diagnosis) - 293 out of 1132. If your read the NDSCR 2006 Report, you will note that:
“Assuming that their [unknown outcomes] proportion terminated remains as before 2006, the likely number of Down syndrome live births in England and Wales in 2006 would have been 767 (46+703+6% of 293), a prevalence of 1.2 per 1000 livebirths occurring in England and Wales in 2006.”
Using the adjusted figure, the rise in numbers you refer to should be correctly stated as being 7% - not 4%. The NHS, NDSCR and you should take more care with their statistics.
Turning to (the more informative) live birth rates: Prenatal blood tests have been the most common form of screening since 1992 and are now offered to every pregnant woman. During this period, while screening uptake as increased (as a proportion of all pregnancies), the live birth rate has rise from 9.2 in 10,000 in to 11.5 in 10,000 in 2006 - up 25%. If you look at the last decade free of provisional data, the rise is 33%.
So, birth rates are rising and rising substantially. As you correctly point out, this is not necessarily due to changing attitudes and changing maternal age patterns are a major influence. However, the static ~91% rate of abortions following prenatal diagnosis figure sheds no light whatsoever on the issue of parental attitudes to screening. This is the proportion of women who have opted for screening, received a positive screen, opted for (risky) invasive diagnostic tests and received a confirmed diagnosis. Presumably (if the NHS are doing a reasonable job of supporting informed consent), few would choose risky invasive diagnostics if they were not planning to abort given a confirmed diagnosis. This says nothing about all the other choices being made in the screening process.
Joe Dunckley said,
November 29, 2008 at 12:42 pm
eyalbd: if we’re going for “causes” in biology and medicine, it’s always great fun to go down the evolutionary causes path.
Anyway, there are several hypotheses for why n-d is seen more in eggs of older women (at least, those eggs which survive and develop). The body has its own systems for doing genetic tests and abortions: fertilised eggs are checked for abnormalities, and if a serious problem is found, the egg is discarded as menstrual cycle carries on. The evolutionary just-so-story proposes that women approaching 45 just can’t risk throwing away what might be their last chance at producing babies, and the body lowers the threshold.
Joe Dunckley said,
November 29, 2008 at 12:45 pm
argh. i mentioned disclaimers about evolutionary just-so-stories, but stupidly picked angled brackets to enclose them.
muscleman said,
November 29, 2008 at 12:51 pm
Eyalbd, it is entirely possible that trisomy 21 is prevalent because it is the one that is less pathological. Other trisomies not allowing a viable foetus. This is almost certainly one of the reasons why fertility overall drops with age. It’s not so much a lack of ovulation as the lack of viable embryos. All sorts of cellular processes begin to fail with age, particularly those associated with dna damage repair etc. So it is not surprising that chromosome counting etc goes as well.
Remember that once formed nascent eggs do not undergo periodic meitosis so the cellular dna proteins do not get turned over as often as say skin cells do, or liver. I have seen data that many postmitotic cells like neurons and muscle have chromosomal abnormalities.
Sperm avoid this for longer since they are created and are turned over frequently. Otherwise both parents would contribute chromosome abnormalities with age.
The Gonzo Girl said,
November 29, 2008 at 1:23 pm
They’re missing the point, when they think it’s about “caring”.
It’s about the misconception, that people with Down Syndrome can’t live meaningful lives, so they’re better not born in the first place.
For whatever reason the number of Down Syndrome births rises, it’s good news, because how is someone going to change their views on Down Syndrome, if one never meets a person with it?
misterjohn said,
November 29, 2008 at 1:38 pm
wewillfixit’s link is wrong.
http://www.leeds.ac.uk/lass/screening%20for%20Down’s.htm
does work
misterjohn said,
November 29, 2008 at 1:40 pm
http://www.leeds.ac.uk/lass/screening%20for%20Down’s.htm
may be better.
If not I give up on using html..
The Nameless said,
November 29, 2008 at 2:01 pm
Hello, I’ve been killing some time reading your site, and I’d just like to say that it’s very amusing. I particularly enjoy the comments from true-believer types with their wondrous “How can it be a placebo? It makes me feel better!” logic.
As for the present issue: how are prospective parents supposed to tell whether society is more tolerant of people with Down’s Syndrome, anyway? Most of them wouldn’t know anyone with it, and it’s not exactly a common dinner-table topic*.
It does appear that the media (which often mistakes itself for society) has become more accepting of the condition, hence their promoting the slight increase as a good thing. Which would be lovely, if not for the implication that parents who abort an affected foetus are only doing so out of cowardice or prejudice.
*Disclaimer: I’m not British, but I doubt you lot are THAT different.
CDavis said,
November 29, 2008 at 2:52 pm
@9 Oh, quite. And how can we learn to accept smallpox victims if these meddling WHO people have eradicated the disease?
BobP said,
November 29, 2008 at 3:22 pm
It’s the apostrophe in the URL. Try this version
http://tinyurl.com/screeningfordowns
(links through to Leeds Uni)
stavros said,
November 29, 2008 at 3:25 pm
NHS Choices is one of my favorite sources! Very good job indeed. Thanks for having a trivially tiny hand in helping to set it up!
gimpyblog said,
November 29, 2008 at 4:44 pm
Yes, i think this is quite common in syncytia because the nuclei undergo different rates of mitosis or, in some species, arrest during mitosis once a certain developmental stage is reached.
If anyone is interested I found this review which explains the biology behind aneuploidies and speculates as to why the risk increases with age for women.
http://humupd.oxfordjournals.org/cgi/content/full/14/2/143
MJ Simpson said,
November 29, 2008 at 6:30 pm
There is a half-page piece about this in the Daily Mail today, basically using it as an excuse to have a go at the BBC but nevertheless getting the facts right. Can’t find an online version.
igb said,
November 29, 2008 at 11:08 pm
My wife was offered the then fairly new AFP test for our first child, which she took. After all, it’s a maternal blood test, what can go wrong? We can make any decisions before the amnio, after the amnio, etc.
Later, we were talking to some friends who were having a child somewhat later in life for both of them, who had declined it: the punchline of any testing for Down’s is an abortion, went their logic, so if you wouldn’t have the abortion, then there’s no point is starting down the road. Conversely, other friends again having children when older had decided up front that they would have CVS testing, presumably having decided what they’d do with the result.
For our second child my wife declined AFP. We were still by then only 34, so this wasn’t quite the statement it would be at 42. The poor specificity of the test and the possible consequences of the more accurate tests were a slight factor, but actually not quite the point: if you’ve decided up front that Down’s isn’t, for you, grounds for abortion, then the test is simply a distraction.
I’d been at school with someone whose younger sister had Downs, and whose father, who also worked with my father, had been very active in working to improve outcomes (I think in fact he was the founder of the Down’s Syndrome Association, and he got an MBE for his work). And my wife had been tutored at university by David Lodge, so we were aware of his work on long-term care — Lodge’s son has Down’s — so we knew something of the later life issues too.
I’m absolutely opposed to the anti-abortion lobby, and I wouldn’t for a second question other peoples’ decisions. And there’s plenty of congenital conditions that my wife and I would have regarded as grounds for abortion. But in this case we reckoned it was a borderline risk of something we felt was on the moral borderline, so we — knowingly — decided not to get involved in the testing. Had we gone on to have another child later in life when the risks were rising sharply, that would be when the strength of our opinions would have been more sharply tested, perhaps.
The Nameless said,
November 30, 2008 at 3:32 am
“For whatever reason the number of Down Syndrome births rises, it’s good news, because how is someone going to change their views on Down Syndrome, if one never meets a person with it?”
So… um…. would you be opposed to ANY way of lowering the Down’s Syndrome birth rate? I mean, if it could be done by drinking green tea (or something equally unlikely)?
I’ve heard this argument that the more disabled people there are, the better off they’ll be, before, and I find it to be quite a leap in logic. You could just as easily say that they’re more likely to be seen as a burden. Your media is taking a warm-and-fuzzy view at the moment, but I’d hardly count on that to last.
The Gonzo Girl said,
November 30, 2008 at 4:36 am
^^
And to avoid people like me being seen as a burden, we must be eradicated, as this will make our disabilities more tolerable.
Is this what you call logic?
And why are you mentioning green tea?
And why is it *my* media?
@CDavis
“Oh, quite. And how can we learn to accept smallpox victims if these meddling WHO people have eradicated the disease?”
If you think mental retardation is as bad as smallpox, you should work on your own intellectual deficits.
“What happens when the - predominantly older - parents are no longer around to exercise their improved caring and warmth?”
Oh, I see, only people, who can support themselves have a right to exist then.
I’ve heard that argument before, from the senior citicens in my country.
I’m German, you see.
frankbuckley said,
November 30, 2008 at 10:55 am
Ben Goldacre is partly right and partly wrong:
http://blogs.downsed.org/frank/2008/11/informed-choice.html
He, the NHS and the “brilliant Behind the Headlines service” are also misleading in their presentation of the statistics.
Ironic, given Ben would usually criticise exactly this sort of sloppiness…
julie oakley said,
November 30, 2008 at 12:59 pm
Emen that is precisely the point I’m trying to make. The chance of not having a Down’s Syndrome child at any age is pretty low and yet even when the chance of having a Downs Syndrome child is lower than the chance of losing the child through having an invasive amniocentesis test, our NHS seem to think that having a Down’s Syndrome child is such a tragedy that mothers are encouraged to have the test.
Mothers should be told that there are only two reasons for having tests - either because you intend to have an abortion if the child has Downs syndrome or because you would like to be prepared before the birth and in both cases are prepared to take the tiny risk of losing a perfectly healthy child.
I know it’s unscientific and emotional but ask most people and they would feel far less likely to be at risk of having a Downs syndrome child if they were given the statistics in percentage terms and especially the percentage chance of not having a Downs Syndrome child. I too feel that these decisions are difficult and personal and are up to the parents, however it seems to me that the NHS has a pro-abortion agenda because the statistics are always given as 1 in whatever which often encourages the terrified mothers to have amniocentesis tests.
emen said,
November 30, 2008 at 3:23 pm
Julie,
I agree with you entirely about presenting the statistics.
Some women feel they are scared into having babies while they are in their thirties if only the “increase” or “risk” is highlighted, not the actual percentage.
Do the NHS actually encourage the mothers to have the amnio, when they receive the “high risk” blood-test result? What happens then? Do they get a “leaflet” or something, do you know?
Frank Buckley, so, where are we then with the original post? :-)The BBC were wrong because they just assumed the rise is due to more parents deciding to keep babies with Downs. But Ben is wrong, as well, because he missed the point that some parents choose not to have the test at all, and he just looked at the 9/10 being static?
Or am I getting totally confused now?
The Nameless said,
November 30, 2008 at 3:32 pm
“And to avoid people like me being seen as a burden, we must be eradicated, as this will make our disabilities more tolerable.
Is this what you call logic?”
No, but then that’s not what I said. I merely pointed out that an increase in the number of people with Down’s Syndrome might not automatically make them more accepted.
Look, the last thing I want is to start a flame war with you. I’m sorry to hear you have a disability, Gonzo Girl, and I can’t begin to guess what problems you’ve faced, but please don’t project your negative feelings onto me.
“And why are you mentioning green tea?”
To inject a bit of whimsy into the other point I was trying to make, which is that ANY measure to cure or prevent disease will, if successful, reduce the number of sick and disabled people. This is the same point, I believe, that CDavis was making about smallpox vaccinations.
“And why is it *my* media?”
*shrugs* Because I mistakenly assumed you were British, that’s all.
.
kim said,
November 30, 2008 at 7:39 pm
A couple of people have talked about not testing for Down’s on the basis that they wouldn’t abort a Down’s baby. That’s fine, but here’s what happened to a friend of mine.
She didn’t test for Down’s at 12 weeks because she thought she wouldn’t abort a Down’s baby. Then at her routine 20-week scan the doctors found that the baby had Down’s. Down’s babies often had heart problems and her baby’s heart problem was so severe that they predicted it would die within a few hours of being born. They advised her to abort, which she did. Because the pregnancy was so advanced, she had to have an injection to kill the foetus and then go through labour to give birth to a dead foetus. It was an extremely traumatic experience.
I mention this simply to point out that while people talk about Down’s babies leading happy, relatively normal lives, some Down’s babies do have terrible health problems - Down’s covers a very wide spectrum.
The Gonzo Girl said,
November 30, 2008 at 10:04 pm
^^
True, but if it can be tested in advance, you can still give Down’s Babies a chance, that don’t have such severe heart problems.
@Nameless
How kind of you to pity me instead, and assume I have negative feelings, because of a disability.
The number of “sick and disabled” people doesn’t need to be reduced, the sick need a cure, and the disabled need to be treated with more respect.
Is this such a foreign concept to some of the commentors here?
tom1 said,
December 1, 2008 at 1:08 am
Gonzo Girl,
I may be going out on a limb here, but I should think that Nameless assumed you had negative feelings because of the strength of your response.
Why do the sick need to be ‘cured’, but the disabled not? If I become disabled I want people to try to improve my condition AND treat me with respect.
Tom
The Gonzo Girl said,
December 1, 2008 at 3:05 am
It is a sign of disrespect, when people think you need to be “improved”, as this clearly implies that you are defected.
People with disabilities have thousands of other abilities, only dead people are really “disabled”, that’s why a lot of deaf people reject hearing aids, most Autistics don’t want a “cure” and people with Downs Syndrome don’t see themselves as defected either.
The Gonzo Girl said,
December 1, 2008 at 3:09 am
PS:
I think the link doesn’t work, so here is what I meant to link to:
“…the Canadian Down Syndrome Society, defining Down syndrome:
Down syndrome is a naturally occurring chromosomal arrangement that has always been a part of the human condition. The occurrence of Down syndrome is universal across racial and gender lines, and it is present in approximately one in 800 births in Canada.
Down syndrome is not a disease, disorder, defect or medical condition. It is inappropriate and offensive to refer to people with Down syndrome as “afflicted with” or “suffering from” it. Down syndrome itself does not require either treatment or prevention.”
Quote from Michele Dawson’s blog “The Autism Crisis”
The Nameless said,
December 1, 2008 at 3:33 am
Gonzo Girl, this is getting silly. Down Syndrome is a major abnormality which causes mental impairment and all kinds of health problems. The fact that it occurs “naturally” is a red herring.
If you would calm down and read my previous posts, you would see that I’ve tried to use neutral language, e.g. “affected foetus” not “defective foetus”.
I never meant to hurt you; however, you seem determined to be hurt… in fact it’s starting to look as though your intent all along was to pick a fight and to push your ideological position.
julie oakley said,
December 1, 2008 at 1:09 pm
Emen after having a partial nuchal fold test (I was about 5 days too late as I’d only just discovered I was pregnant at age 44) the doctor who’d done the scan said that the scan indicated that I was probably less likely to have a Downs syndrome child but that he would still urge me to have an amniocentesis because I was still screen positive with something like a one in 200 chance or 0.5% chance of having a Downs syndrome child. My curiosity about my unborn child did not extend to endangering his life to find out.
I’d be interested to know Kim, whether the doctors would have advised a mother of child without Downs syndrome but with a major heart problem to abort at 20 weeks.
I have a friend who had a beautiful little boy with Downs syndrome. He had a life threatening medical problem when he was born that is routinely without question treated with surgery in children without Downs syndrome (and which has a near 100% success rate, I believe). She was horrified when the hospital staff suggested that she might want to skip the operation and allow her child to die naturally. Of course she insisted on the surgery. He’s now 15 years old, very happy, very healthy, in mainstream school and a joy to know.
warhelmet said,
December 1, 2008 at 1:19 pm
@Kim,
I think you raise a very interesting point that drives at the very heart of some issues regarding screening.
Your friend came to the conclusion that an abortion at 20 weeks, however traumatic, was going to be less traumatic than delivering a child that would only live for a few ours. And I would guess as well that she thought of the child’s suffering as well?
I personally am unsure how I feel about this - it’s something you can’t be sure of until it actually happens to you. I have an intellectual position, but it’s not the same thing.
My wife and I have fertility issues. She’s had two miscarriages and we’ve been trying for years. We should begin IVF reasonably soon. If and when she does become pregnant, being in the older age group, screening will be an issue for us. Would our selfish desire for a child affect our judgment regarding screening? I don’t know.
*sigh*
tom1 said,
December 1, 2008 at 1:22 pm
Gonzo Girl,
I think there is a lot to be said for your ‘we-don’t-need-a-cure-position’, particularly as a personal philosophy. Which of us is perfect after all? There are many things, major and minor, for which it isn’t possible to correct our imperfections and make us ‘normal’. Pursuing incremental improvement for it’s own sake is clearly problematic. But I don’t see that it is obviously and universally wrong to seek to improve/correct/cure that which can be improved/corrected/cured.
[When I say improved/…, I mean in the eyes of the person being improved rather than in any absolute sense. If they don’t think they need a cure, then they don’t need one. If I appear to use these words in a different sense, it is the fault of my typing rather than my intent.]
Why treat disease and not disability? Why define anyone as ’sick’? Are we making value judgements about people with chronic illness?
That said, it seems to me that there is a seperate issue of ‘deselecting’ a foetus with a disability, particularly one like Downs, in favor of a foetus without. I find that far more troubling than seeking to help people who want to be helped.
Tom
tom1 said,
December 1, 2008 at 1:35 pm
If we’re doing show-and-tell, we got odds of around 1/100 for Downs and decided not to do an amnio as we would keep him regardless. I wouldn’t want to pass judgement on anyone who went the other way though.
If terminating a pregnancy is wrong then, for most people, it’s it’s own punishment. Certainly at 20 weeks.
muscleman said,
December 1, 2008 at 2:54 pm
I wonder how many here spotted this piece:
http://news.bbc.co.uk/1/hi/health/7749883.stm
Offering the possibility for at least a remediation of some of the effects of Down’s while in the womb. Particularly what say you Gonzo Girl?
motmot said,
December 1, 2008 at 11:30 pm
There’s a really good post by Michael Berube up at Crooked Timber about his debate with Peter Singer (another philosopher) on how having Down’s has affected his son and others, and the wide range of abilities found in people with Down’s: http://crookedtimber.org/2008/12/01/more-on-peter-singer-and-jamie-berube/
The Nameless said,
December 2, 2008 at 5:01 am
“Offering the possibility for at least a remediation of some of the effects of Down’s while in the womb.”
That, if it worked, would be the real-life version of my “green tea” argument (#24.)
aa said,
December 2, 2008 at 3:13 pm
Sorry, GonzoGirl, but Down’s Syndrome is a bad thing to happen to somebody, being blind/deaf/limbless is a bad thing to happen to somebody, and, yes, autism is a bad thing to happen to somebody. It’s not just a more or less neutral characteristic like being blond or short or bald.
Bad things happen to everybody, in different ways, to different degrees. The question is, how do we deal with the fact that things often go very wrong, both as individuals and as a society. Pitying people who have the problems I mentioned above is obviously ridiculous and patronising. But it’s equally ridiculous, and equally damaging, not to regard those problems as such.
The Nameless said,
December 2, 2008 at 5:30 pm
I just came back to comment on something I find quite disturbing– that quote from the Canadian Down Syndrome Society:
“Down syndrome is a naturally occurring chromosomal arrangement that has always been a part of the human condition…
…Down syndrome is not a disease, disorder, defect or medical condition.
…Down syndrome itself does not require either treatment or prevention.”
Now, I’ll grant that “disease” is a loaded sort of word, and maybe shouldn’t be used of a genetic disorder. The rest of it though, suggests that these people– I presume they have children or relatives with Down’s Syndrome– can only cope with the situation by going into complete denial.
And why is it so shameful to have a “medical condition”, anyway?
Michelle Dawson said,
December 2, 2008 at 8:48 pm
I don’t find it disturbing that the CDSS (which includes people with DS in its leadership) provides accurate information about DS. I suggest reading their website. The CDSS has made Canada a much better place for people with DS, and for other disabled people.
The CDSS has promoted the accurate view that people with DS are not sick, inferior, defective, etc., and do not have to become people without DS in order to achieve equality.
That the CDSS does not see people with DS as sick, inferior, or disordered does not mean that the CDSS considers that people with DS, unlike all other human beings, do not need education, assistance, services, etc. Nor does it mean that people with DS, unlike all other human beings, never suffer or encounter difficulty, etc.
I generally disagree with the assumption that the obstacles encountered by disabled people must be rectified by declaring that there is one optimal way to be human, and then requiring everyone to aim for that or be regarded as sick, disordered, inferior, etc. In my view, there’s a lot of history showing that proposing optimal ways of being human is not a good thing.
I can remember when it was assumed that the optimal life was white, male, and straight. Anyone proposing otherwise would be ridiculed. We’ve gone a ways in getting over that.
But there is still what Catherine Frazee calls the “colossal failure of imagination” about the lives of disabled people.
I am autistic. Many people, including judges and political leaders, cannot imagine that my life is worth living. If I accomplish something, it’s assumed that I’ve somehow temporarily (and no doubt heroically) overcome my disability to struggle nearly up to the non-disabled ideal that I must spend my whole life striving for.
In reality, I’m a researcher and have accomplished things (even if I get hit by a bus tomorrow, my work is out there) mostly only because I’m autistic. And yes, I have exactly the traits and difficulties that are routinely deployed to scare the public about autism. But I could not have done what I’ve done if I weren’t autistic. I’m useful because my range of abilities is highly atypical.
I’m vividly aware, every day, that anyone is free to call this dysfunctional, diseased and disordered and to remove my freedom and opportunities accordingly–this is certainly within my experience, and will probably happen again–and to require me to spend my life undergoing medical treatment and interventions so that I am doing what I should be, working towards that ideal optimal non-disabled life.
Or it could be recognized that a wide range of human abilities is not a bad thing, no matter how hard it is, apparently, for many people to imagine that some of us have worth and things to contribute.
heavens said,
December 2, 2008 at 8:55 pm
The idea that “most” people with disabilities don’t want to be cured is just flat wrong. Across the hall from me is a woman disabled due to constant pain: she’d LOVE to be cured. I’m disabled due to an incurable form of cancer: I’d LOVE to be cured — not just “stable”, not just “in remission”, but all the way to “permanently cured”.
There are *some* people with *certain* disabilities that don’t want what they perceive as a “cure”. These people tend to have mild forms of autism, moderate forms of ADHD, or profound deafness.
The anti-”cure” Deaf people are a useful illustration. Deaf people have their own culture. This (in part) is because they had their own residential schools for a century or so, which provided them with shared experiences and history. They have their own language. They hang out together. They work together. They live together — someone in the US is even trying to build a Deaf-only town.
Then cochlear implants appeared. “Deaf” kids could hear. They could talk. Their proficiency in sign language is limited. This is great for these kids: they have abilities that they weren’t born with. They can live at home and attend their neighborhood school. Year-round placement at the state institution is being replaced by two weeks of summer camp.
This is horrible for older Deaf people. The next generation of their culture is being systematically eliminated. There are very few kids. They’re losing the critical mass that makes a Deaf university possible. When they are elderly, they’re going to have more and more trouble finding anyone that can communicate *fluently* in sign language. Their culture, their way of life, is rapidly being engineered out of existence.
So we get certain stupidities, like pitching a fit over the new president at Gallaudet, because he’s not *sufficiently* Deaf — Deaf, the culture, not deaf, the medical condition. I still don’t think, though, that we’re doing these kids any disservice by giving kids cochlear implants. Instead, I think the “keep me disabled” lobby is being selfish.
ForeverAutumn said,
December 2, 2008 at 9:27 pm
@CDavis
“What happens when the - predominantly older - parents are no longer around to exercise their improved caring and warmth?”
I expect it depends on the level of ability and the support available. A friend of mine has a DS relative in his 50s who lives in sheltered accomodation with some other mentally handicapped people. He is visited regularly by a social worker but otherwise lives a reasonably independent life and appears happy. His parents died a few years ago but other family members will often check in on him. He had a part-time job until recently when he started having some health issues (possibly related to the DS, possibly not).
tom1 said,
December 2, 2008 at 11:56 pm
I suppose for some people their disability is part of their sense of self, for others it is a limitation they could do without. Is an absolutist position really appropriate? It seems to me when it is a case of individual disabled people choosing, or not choosing, to be cured things are pretty simple [Does anyone disagree?].
Where it’s maybe slightly less simple is when society/parents make the choice to select out disabilities like Michelle’s. At that point all the stuff about making value judgements seems appropriate.
The Nameless said,
December 3, 2008 at 5:31 am
“I generally disagree with the assumption that the obstacles encountered by disabled people must be rectified by declaring that there is one optimal way to be human, and then requiring everyone to aim for that or be regarded as sick, disordered, inferior, etc.”
“I’m vividly aware, every day, that anyone is free to call this dysfunctional, diseased and disordered and to remove my freedom and opportunities accordingly”
This is getting tiring.
Do you guys– I mean you and Gonzo Girl, who seem to be birds of a feather– actually bother to read what other people say? Or do you just skim posts looking for trigger-words?
Please try and understand: saying someone has a “disorder” or “medical condition” does NOT equate with saying that person should be locked up or otherwise oppressed. Yes, that can happen… but the one does not automatically lead to the other. That’s a “slippery-slope” argument.
And what kind of perfect super-beings do you think the rest of us are? Normal– for want of a better word– people suffer from “medical conditions” all the time– starting with the common cold!
For most of us terms like “condition” and “disorder” are neutral. Apparently to you they have a special, coded meaning, but all anyone else has done is use everyday words in an everyday way. It is simply not reasonable of you to blame us for that. Besides, your consignment of words to the “taboo” category seems completely arbitrary. Why is “disability” okay, but “medical condition” forbidden?
Now, I’m sorry if people have treated you badly, but look to your own pre-conceived ideas. I’m getting quite an impression that “normal = bigot” is one of them.
P.S. Down’s Syndrome *is* a genetic disorder. Deal.
tom1 said,
December 3, 2008 at 10:22 am
A question for my better understanding:
Do Gonzo Girl and Michelle believe there is a difference in terms of this argument between conditions you are born with and ones that are the result of illness or injury? I assume that you would put people born with some kind of ‘neurological impairment’ in the same catagory as Downs in that they don’t need a cure. What about someone with a similar ‘impairment’ due to a road accident? Assuming there was some wonder-stem-cell cure, should it be used on either one?
tom1 said,
December 3, 2008 at 10:29 am
By the way, I find Gonzo Girl and Michelle’s position really interesting, but very hard to relate to. I look forward to them clarifying it a little.
Michelle Dawson said,
December 3, 2008 at 10:30 am
I remember when women were barred from doing many things, like signing for loans and running marathons, due to being considered inferior and disordered. For this reason, where I live, women were barred, until 1980, from delivering the mail.
If the word “disorder” (or “disease”) is neutral and universal, than no one would mind femaleness, left-handedness, Jewishness, homosexuality, etc., being regarded and treated as “disorders” (if applicable, “genetic disorders”), or for that matter “medical conditions” or “diseases.”
Disability is defined in Canadian law in a Supreme Court of Canada decision; you can find the relevant bit within this post http://autismcrisis.blogspot.com/2007/03/autism-advocacy-at-canadian-human.html
But mostly I don’t see any way to respond to the notion, promoted by Nameless, that neurodevelopmental disabilities are just like the common cold.
Michelle Dawson said,
December 3, 2008 at 11:02 am
In response to tom1, mostly I do science and ethics–two methodologies. I do slow, plodding, non-sophisticated things. I’m not big on speculation re wonder stem cell cures or anything else. But I have not mentioned cures and mostly don’t write about this issue (exept to mention the positions taken by various organizations or individuals).
The only relevant question re a cure for autism is whether the priority on eradicating autism (cure/prevention), which has dominated autism research, advocacy, public policy, etc., for decades, has benefited autistics. In my view, it hasn’t, and there is evidence (I’m a fantastic anecdote in this respect) that it has harmed us.
Re acquired (vs innate or developmental) disabilities, I suggest reading a variety of stuff by people who have acquired brain injuries (or other disabilities) of various kinds as adults. It’s well recognized, at least outside of autism, that the wishes and priorities of those who are the subject of research deserve consideration, and this is for good reason.
warhelmet said,
December 3, 2008 at 12:53 pm
Although it is a work of fiction, I would suggest that people interested in Autism read “The Speed of Dark” by Elizabeth Moon.
Coobeastie said,
December 3, 2008 at 6:46 pm
I suspect that I may have missed some points over the course of this discussion, so apologies in advance.
I find pre-natal screening personally threatening. No, I don’t have Down Syndrome. I have a mental health condition that research suggests has a genetic factor. It has made my life difficult and is controlled with medication (among other things). Say someone in the future discovers a pre-natal test; most pregnant women who find out the fetus is affected abort. What does that say about me? That my life is not worth living? I’m not worth anything as a human being? Better dead than mentally ill?
I understand that raising a disabled child is more stressful and expensive; that there are bloody good reasons that women have for going for the terminations. But the overall debate is rarely carried out in terms of individual circumstances; rather about how awful it must be to have Down Syndrome. The condition, the person with the condition is denigrated - I’m not denying learning disabilities, thyroid problems, cardiac problems: I’m talking about having the same worth as any other human being.
Overall, I would suggest that a large number of posters read something about the disability rights movement. They will find people with acquired injuries, congenital conditions, a huge spectrum of people. Including, incidentally, a group of people with Down Syndrome who gatecrashed a medical meeting about prenatal testing to make the point that they most certainly felt their lives were worthwhile!
Yes, a pure social model of disability does have problems (as heavens wrote above, anything that causes constant pain is bloody horrible to live with, cures wanted!). But this is not something the disability movement has ignored - Tom Shakespeare has written on this issue, among others. Can you campaign for rights and cures at the same time? A cure fifty years down the line but with total sacrifice of rights along the way - worth it? For who?
If someone offered to cure my mental health problems tomorrow - I’m not sure I would. How much of ‘me’ is left once you make those major neurological changes? I’m familiar with Michelle Dawson’s work as part of a broader ‘Neurodoversity’ movement. If we even out all the strangeness of human minds, we risk cutting the species off from some wonderful strangeness.
ForeverAutumn said,
December 3, 2008 at 7:06 pm
The talk of a “cure” in the case of DS is a bit disingenuous (experiments on mice notwithstanding). There is currently no “cure” for DS; we can’t remove the extra chromosome. We can alleviate some of the difficulties with appropriate education, medical treatment for some issues (such as heart problems), and greater acceptance. All these things improve life expectancy and quality of life for people with DS and their families - but babies born with DS will have the syndrome throughout their lives (albeit with different levels of outcome). Preventing DS births is not the same as a “cure”.
I agree that the 91% figure tells us v little. People who would not consider abortion in the circumstance would have no reason to get the amnio - I assume the 9% are people who changed their minds. Personally, I would not get an amnio because (a) I wouldn’t take the risk of miscarriage and (b) I don’t see the birth of a DS child as a tragedy. This may be because I have met people with DS, so there may be something to the view that knowing = accepting.
warhelmet said,
December 3, 2008 at 10:08 pm
Some people’s concerns with screening for Down’s is that it is “eugenics by abortion”. Eugenics is a dirty word because of associations with the Nazis and even the (historical) compulsory sterilisation of “mental defectives” in what we consider to be liberal countries such as Sweden.
It is certainly the case that state control of human fertility is a violation of a fundamental human right. But, I’ve heard stories that I do not want to repeat that illuminate the other side of the coin. There are vulnerable individuals who have no voice.
Tay-Sachs is very unpleasant genetic disorder. But do we regard the actions of, say, Dor Yeshorim as being a form of eugenics? Is there a fundamental difference between genetic conditions that are recessive and have carriers and those that are essentially the result of the result of meiosis screwing up?
By accepting pre-conception and post-conception screening for certain conditions, the argument runs that you are practising eugenics. The desire to eradicate certain conditions is seen by those with the condition as invalidating their worth and status as a person. Arguments about suffering are largely irrelevant. As far as I am aware, I have no genetic problems but I have experienced a lot of suffering in my life. If a gynaecologist with a 100% reliable crystal ball said to my mother “this one is going experience incredible suffering and will suicide anyway” - should she have aborted me?
Arguments about longevity are irrelevant. True, certain genetic conditions do result in a reduced life span but we are all subject to the bus that runs over us.
And I worry about moral relativism as well. Whilst I don’t believe in moral absolutes, I do believe in moral imperatives.
My next statement is *highly* controversial. Human beings are very group-focussed. A lot of us use group membership as a cornerstone of their identity. Think about when you meet people and introduce yourself. Many people will use their occupation as a opening gambit. I don’t, but I’m just plain wierd.
The mention of the deaf community is very germane. I’ve worked with deaf people in the past and it can be the case they see themselves as part of the deaf “tribe”. How would you feel if your tribe faced extinction? Especially by state-edict?
It gets worse. I do respite care for learning disabled children on a voluntary basis. I had to do a lot of training with other people and to be honest, a lot of their attitudes stank. I won’t vent the whole of my spleen but… Pity is not enabling. The object of your pity is disabled by that pity. Oh isn’t sad that X can’t do activity Y? No. Pity is an invalidation of the person. Is it not better to celebrate what they can do? Is it not better to enable them to do more? Pity condemns people to failure.
I’ve suffered mental illness in the past. I’m OK-ish, but I’ve observed the attitudes of others. Of course, it’s not the same as a permanent disability, but it has provided a window. Watching the judgment that goes on in people’s heads. Being talked about in the third person as if I wasn’t there. Yet another round of mental health professionals asking me the same old questions.
I do understand where Gonzo Girl and Michelle are coming from. Especially Michelle (I work with the autistic). Whether or not I agree is another matter.
Ethics. Bio-Ethics. Medical ethics. Medico-legal stuff. This doesn’t fall into the realm of “Bad Science”.
Ben’s article questioned whether attitudes towards Down’s Syndrome had actually changed given the evidence. I don’t know and I suspect that abortion figures are the wrong place to look. Can you judge societal attitudes from a self-selecting sample of the population? Erm - “self-selecting sample” is an overly strong term but I’m sure that you can see what I’m driving at.
I still don’t know exactly what I feel about this.
Squander Two said,
December 3, 2008 at 10:19 pm
I’m reminded of the debate about determinism. It was downright silly to believe that all the social ills that would supposedly spring from a belief in scientific determinism actually would. But they did anyway.
Sure, there’s no rational reason why screening foetuses for Down’s should inevitably lead to prejudice against adults with Down’s; it’s not necessary, it’s not inevitable. But it doesn’t take much study of human nature to conclude that that is exactly what will happen. You may (and I may) make perfectly sound arguments for why these abortions have no impact on your perception of the value of the lives of the already-born. But it’s got nothing to do with what thoughts leads to what other thoughts within your own head when considering a single issue. The problem is to do with what actions lead to what beliefs across society as a whole over long periods of time when all these separate issues are jumbled up together in the public’s hive mind and not particularly considered at all. It’s no good telling the entire public that a popular prejudice is based on a logical fallacy.
So I think what the argument here boils down to is that we have some intellectuals pointing out, absolutely correctly, that aborting a foetus because it has Down’s is a completely separate issue to how people with Down’s should be treated and in no way means that their lives should not be considered valuable; and we have some people with disabilities, who have a bit of life experience of being on the sharp end of these things, pointing out, absolutely correctly, that that’s not how things work in the real world.
tom1 said,
December 3, 2008 at 11:02 pm
The last couple of posts make more sense to me.
I do think though that the price for rejecting neonatal testing/abortions is payed by parents. The Dr Crippen link in Ben’s Mini Blog makes interesting reading:
http://nhsblogdoc.blogspot.com/2008/12/crippen-diaries-2008-december-1.html
Unless more is done to help carers, the price is just too high to for me to judge anybody who doesn’t want to pay it.
The Nameless said,
December 4, 2008 at 3:19 am
“Sure, there’s no rational reason why screening foetuses for Down’s should inevitably lead to prejudice against adults with Down’s; it’s not necessary, it’s not inevitable. But it doesn’t take much study of human nature to conclude that that is exactly what will happen.”
Ummm…. except that such testing has been in place in Britain, and elsewhere, for many years now, and has NOT, it seems, lead to this.
I agree that testing is a difficult issue, and that some conditions simply have no feasible cure at present. However, La Dawson and Gonzo Girl have moved far beyond that to the point of insisting that Down’s Syndrome is not a disorder *at all*… and that anyone who disputes this is seeking a way to oppress them, personally, and deny their worth.
And THAT– not the possible results of screening– was the logical fallacy I was pointing out from the heights of my ivory tower.
In other words, they’re trying to force their completely unfounded– but obviously cherished– beliefs on us via emotional blackmail.
Now, though I drew attention to it as a logical fallacy, I could just as well call it an insult. I was, in fact, insulted. (Yes, Michelle, us neurotypicals have feelings too… even if we can’t hope to approach the level of moral and ideological purity of the neurodiverse.)
I’d *never* accept that level of argument from an able-bodied/minded person. Isn’t it rather patronising to do so when it comes from an autistic?
Michelle Dawson said,
December 4, 2008 at 4:01 am
I don’t see any blackmail, etc., in accuracy. Again I suggest reading the information provided by the CDSS.
I have not seen any arguments here for DS being a disease, disorder, defect and/or medical condition that are better (more accurate) than the information provided by the CDSS. I also recommend the work of the physician, Brian Skotko, and in the more general area of developmental disabilities, the work of People First.
I don’t use the word “neurotypical” or the word “neurodiverse” or the word “oppress” (unless, like here, I’m quoting someone else). Nor have I written anything about anyone’s feelings or lack thereof.
I am concerned about public policy, the law, the jurisprudence, etc. (as well as standards of science and ethics), and their unvoidable consequences, mostly in the area of autism. I did spend a lot of time looking at non-autism disability organizations (for many reasons) and this was how I encountered the CDSS, People First, and others.
After reading the information provided by CDSS, and speaking with CDSS officials (instead of simply assuming they are all ignorant of DS and deluded), I’ve quoted the CDSS many times, for various reasons (anyone interested can look this up).
The “level of argument” Nameless invokes has nothing to do with anything I’ve actually written (see above, or for that matter, anything I’ve written about anything).
The Nameless said,
December 4, 2008 at 4:26 am
*Musings of a Nameless Neurotypical*
So how do I *feel* about this?
Well, I may as well admit now that I *do* pity (but not despise) disabled people, I *am* very glad I’m not one, and I *do* tend to assume that, other things being equal, I’ve had a better life. I also should greatly prefer that any children I may have down the track be normal. I’m sorry if that’s a hurtful thing, but it’s not something I can help… and so far no-one has given me a single reason to see things differently.
I *don’t* think the fact that I’ve been dealt a better hand by fate/genetics/whatever makes me a better person. I don’t think it makes me a worse person either… and there’s the rub. I have, as I said, a fairly strong impression that this is *exactly* what Ms Dawson and Gonzo Girl think. Prejudice cuts both ways.
Understand– in no way am I disputing that people like Michelle, Gonzo Girl and the new arrival, Coobeastie, do indeed meet with prejudice and have had bad experiences… the fact that their sense of self-worth is seemingly so incredibly fragile proves this, as far as I’m concerned.
Unfortunately, it makes it very hard to debate with them as I would with anyone else. For one thing, I’m afraid that if I win even the minor point that no, Down’s Syndrome is *not* just a normal variant, these guys will all slash their wrists. For another, it’s always hard to argue with someone who gets a free pass on using logical fallacie