Scientific proof that we live in a warmer and more caring universe

November 29th, 2008 by Ben Goldacre in bad science, badscience, bbc, independent, mail, media, mirror, times | 170 Comments »

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.

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170 Responses

  1. tom1 said,

    December 8, 2008 at 10:53 am

    So Bad Science has opened an outreach program for neurologically impaired internet trolls. I suppose it was time that the skeptic community offered them something beyond the JREF conspiracies forum; I just wish Ben had mentioned this new program.

    Please give generously! One naïve, credulous post can feed a troll for a week. Don’t let your local troll go hungry over the festive period.

  2. The Nameless said,

    December 8, 2008 at 2:31 pm

    @tom1.By the way, in one of the weird late-appearing posts, I see Squander Two has pulled the classic “get the liberal to condone murder” trick on you. The man is clearly an experienced debater, and has known *exactly* what he’s doing all along. (I suspect that’s why he didn’t want to argue on logic.)

    Thanks for keeping things civilised. I’m prone to turning vicious after a while.

  3. tom1 said,

    December 8, 2008 at 7:40 pm

    @The Nameless. Thanks,
    SquanderTwo was a troll, its GonzoGirl and friends who bothered me. I do so want them to understand.

    See you in another thread!

  4. MedsVsTherapy said,

    December 9, 2008 at 4:01 pm

    Brainduck said:
    “My brother is affected to the point that he’s not managed several attempts to live independently, get a degree or job. I’ll probably have to look after him when our parents aren’t able. So what? This isn’t a ‘tragedy’, it’s just life.”

    Good point! There are many people out there who have no chromosomal abnormality, yet are a huge burden to everyone else. Can we kill them, also? At what point can we kill off our elders when they are no longer productive, and require lots of medical care simply to keep them gurgling along? It is such a hassle to make the occasional visits, change their diapers, etc.

    Why do we pick on the unborn?

  5. MedsVsTherapy said,

    December 9, 2008 at 4:15 pm

    “A woman who chooses to abort on the basis of disability is allowed to do so by law.”

    Exactly. Here in the U.S., you generally are able to abort with no reason for justification. Yes, there are a handful of caveats, but generally, this is the case. Modest differences and twists on law occur because health is regulated by the states, not by fed govt.

    So, if you want to abort you fetus because you have detected that it is female, not male, that is OK, and is a documented recent phenomenon in the U.S. (PMID 18378890). I don’t know whether this is the trend in the U.K. yet.

    The disAbilities community is beginning to be alarmed about abortion for likely disabilites such as Downs because it basically is indicating that most of us are worthy of being born except those with certain disAbilites – so these advocates see themselves in these statistics.

    The same-sex community is getting alarmed every time some new finding comes out that supports genetic basis for same-sex attraction, since the suspected likelihood is that people may abort a child on the likelihood that it will be same-sex attraction.

    So, no, you don’t need to meet a certain justification to have an abortion in the U.S. You just need to cover the cost of the procedure.

  6. The Nameless said,

    December 9, 2008 at 6:05 pm

    @MedsvsTherapy. I have answered your silly and deliberately offensive question already.

    But here it is again: we “pick on the unborn” because they *are* unborn. Once they’re born they’re people.

    It may astonish you to learn– in fact, judging from the responses I’ve seen on this thread, it WILL astonish you– that even those of us so supremely wicked and selfish as to prefer, should we have the option, *not* to have to spend the rest of our lives caring for a handicapped person do have occasional qualms about murdering our grandparents. Really. We do.

    –Oh, I do like this:

    “The disAbilities community is beginning to be alarmed about abortion for likely disabilites such as Downs because it basically is indicating that most of us are worthy of being born except those with certain disAbilites – so these advocates see themselves in these statistics.”

    Oops! You forgot to write “disability” in CamelCase the secondTime! Now what will your disAbledFriends think of you? What’s become of your politicalCorrectness?

    Seriously– I am sick and tired of hearing about people who are somehow afraid of being the victims of retroactive abortion. Enough.

    MedsVsTherapy, I have been arguing for days with better trolls than you. Go away and take your fanatical opinions with you.

    -By the way, I have a genetic defect myself and I do not feel threatened by abortion for Down’s Syndrome (or is it downsSyndrome). You and your friends do not speak for everyone, you just think you do.


  7. tom1 said,

    December 10, 2008 at 9:49 am

    Surely this is a general argument against abortion? I mean we don’t allow euthanasia in adults, so why for a foetus? Once you rule out things that wouldn’t be allowed for adults you’re just left with abortion where the pregnancy would kill the foetus and the mother. Even then you’d be on pretty delicate ethical grounds for adults.

  8. tom1 said,

    December 10, 2008 at 10:32 am

    “Why do we pick on the unborn?”
    If we are asking, why is it OK to treat foetuses differently to babies/children/adults? Couldn’t you equally say, why treat unfertilized eggs and sperm differently to fertilized eggs?

    Isn’t this an arbitrary moral judgement made my society?

  9. The Nameless said,

    December 10, 2008 at 10:53 am

    Well, perhaps MedsVsTherapy is just anti-abortion in general, which is at least a consistent position.

    If so, MedsVsTherapy, you’re in the wrong thread.

  10. tom1 said,

    December 10, 2008 at 6:45 pm

    “…indicating that most of us are worthy of being born except those with certain disAbilites”
    Going back to the conversations of some days ago, this is exactly the choice of words that I think Gonzo Girl, Michelle and others would have used and one of the points where I think we diverge. “Worthy” is just not a word I would use here, not without fleshing out in a lot more detail exactly what you mean. I’m curious to learn what you think.

    One of the problems seems to be that people reason whatever ‘worth’ you assign to a foetus you are also assigning to a child, or an adult.

    I think this is wrong if only because by the time you have a child, let alone an adult the situation has changed. You love them specifically rather than the idea of them and have a history with them specifically that can’t be transferred to a theoretical superior child. In considering abandoning that history the cost benifit changes.

    Another problem seems to be that people assume that whatever consequences one decides to apply to this assignment of ‘worth’ are necessarily desired as ends in themselves. Thus, people end up reasoning that if you would abort a disabled foetus then the abortion of disabled foetuses something that you find desirable.

    This seems to me to be clearly nonsense. I might feel (rightly or wrongly) that I wouldn’t be able to cope with a child with a particular disability, but I certainly wouldn’t judge somebody who found they could cope and were able to enjoy such a child. If anything it might make me regret my decision.

  11. Coobeastie said,

    December 11, 2008 at 7:44 pm

    Hmm, if I mention Foucault on a badscience thread is that a Godwin equivalent? Because part of this seems to be a disagreement on the use of language (ie construction of meanings and the power that they have in the world). The post on the use of ‘pity’ is interesting – who ‘owns’ the meaning of that word? (Think of debates about the N-word and ‘queer’ if you’re not sure what I’m talking about).

    What part of this comes to as well, if I’m going sociological, is the power-construct. Nameless et al cannot imagine that people who do not have the ability-priviledge that they do can have happiness/fulfillment in their lives. Therefore, it is acceptable for them to be aborted for the simple reason that they do not fit the social construct of a ‘person’ (or a good person? A worthy person?). A social construct that’s negotiated here by individuals who state clearly that they can’t imagine being disabled, but feel that their power-status allows them to throw down dictats to those who have had similar/relevant experiences.

    @Nameless, “this lot all have neurological problems which I suppose affect the way they perceive things”
    Wow, I’d read that one in Joanna Russ’ ‘How To Supress Women’s Writing’, but I’d never had it used on me. Thank you for trying to undermine my perspective, but I’m damn sure it’s at least as valid as yours.

  12. tom1 said,

    December 11, 2008 at 10:57 pm


    One interesting thing about the pity debate was that the word was originally used by Gonzo Girl to describe feelings that she attributed to other posters (possibly The Nameless).

    There is definately a discussion to be had on different interpretations of the word. I don’t think people have always helped themselves on this thread with their choice of words. Having said that, it is at a level beyond individual words that I think the misunderstanding/disagreement is coming in. People are reading large sections of text and getting totally different things from it.

    I for one think Gonzo Girl and others have genuine points to make that I and others are failing to understand. I also think Gonzo Girl and others are repeatedly failing to see the intended meaning of other peoples posts.

    Coobeastie, I wonder if you could point me in the direction of the post(s) by The Nameless that led you to conclude:

    “Nameless et al cannot imagine that people who do not have the ability-priviledge that they do can have happiness/fulfillment in their lives.”

    I’ll happily reread the thread, but right now I can’t recall anything like that.

    To be continued….

  13. Coobeastie said,

    December 11, 2008 at 11:20 pm

    Post 62, “I *do* tend to assume that, other things being equal, I’ve had a better life”

    I was writing the post from memory of the other comments, and think on re-reading I’ve over-extrapolated. A bit of journalistic mis-representation on my part, sorry 🙂

    I’m going to bow out of this – it’s a really interesting debate, but I’m up to my eyeballs in work at the moment!

  14. The Nameless said,

    December 12, 2008 at 4:09 am

    @Coobeastie. As for “owning” words: no, you do not get to re-define common words and then attack people for using them the normal way.

    Re: my comment about neurological disorders and perspectives: sorry if that came across as an insult… but I said that *because* everything I say comes across as an an insult… the image of a distorting mirror came into my head.

    I was trying to make allowances for you. Several of you have said you have neurological impairments… it’s not unreasonable to guess that they might be responsible– also for your apparent lack of interest in the way other people see things. That said, I’ve had plenty of experience debating with people who do exactly the same thing, with no such excuse.

    “Thank you for trying to undermine my perspective, but I’m damn sure it’s at least as valid as yours.”

    Actually, I think the problem all along is that your “side” has come in with the conviction that your perspective is the *only* valid one.

  15. The Nameless said,

    December 12, 2008 at 4:12 am

    Anyway– we are clearly *never* going to agree, so can we consider this closed?

  16. tom1 said,

    December 12, 2008 at 10:10 am

    @Coobeastie. I appreciate your reply. One of the frustrations I’ve had has been interpretations of this thread (not a million miles away from yours) where people haven’t been so swift to come forward with quotes.

    @The Nameless. Is this thread finally dead, or will it rise again…?

  17. The Nameless said,

    December 12, 2008 at 2:56 pm

    @tom1. I *hope* it’s dead. I’m tired…

  18. MedsVsTherapy said,

    December 18, 2008 at 11:30 pm

    Wow I got a lot of response! BTW: yes, I am against abortion regardless of the convoluted defenses for supporting abortion (Iam still parsing this: “You love them specifically rather than the idea of them and have a history with them specifically that can’t be transferred to a theoretical superior child. In considering abandoning that history the cost benifit changes.”).

  19. MedsVsTherapy said,

    December 22, 2008 at 2:53 pm

    I get it. food for thought. hopefully my comments are food for thought for you.

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