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Changing attitudes?

Peter Horrocks Peter Horrocks | 08:25 UK time, Friday, 5 December 2008

There has been comment about recent coverage on the BBC and elsewhere of changing attitudes towards Down's Syndrome. My colleague Rob Ketteridge, editor of the documentaries unit in Audio and Music Factual, explains.

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    By Rob Ketteridge
    On Monday 24 November the Radio 4 documentary "Born With Down's" and BBC News reported that more babies are being born with Down's Syndrome than at any time since prenatal screening began in 1989. In 1989 there were 717 Down's Syndrome births. This figure then fell to a low point of 572 in 2001, since when there has been a steady increase to 749 in 2006 - the last year for which figures are available. Since 2001 the proportion has risen ahead of the overall birth rate.
    So far so good and accurate. But do the headline statistics support the idea that more parents are choosing to continue with pregnancies after Down's Syndrome has been diagnosed or when it is a high risk? And if so, is there any evidence that a reason for this could be that social attitudes towards Down's Syndrome are changing?
    Since the documentary was broadcast these questions have become a matter of fierce debate, with some of the medical experts and statisticians as well as some journalists challenging these hypotheses. One issue they have raised is that there has been an increase in the number of older mothers with a higher risk factor for Down's Syndrome during this period. They argue that the rising trend is therefore predictable and without prenatal screening it would be significantly higher. They also state that from 1989 to 2006 the proportion of women choosing to terminate a pregnancy following prenatal diagnosis of Down's Syndrome has remained constant at around 92%.
    To shed more light on this, we need to look at the data in more detail. Bear with me because things are about to get more complex.
    The figures are published annually by the National Down Syndrome Cytogenetic Register run by Joan Morris who is Professor of Medical Statistics at the Wolfson Institute of Preventive Medicine in London. Follow this link [pdf] and look at Table 7 on Page 8 of the latest report for 2006. The table shows that in 1989 there were 1033 diagnoses of Down's Syndrome in total, of which only 30% approximately (318) were prenatal. There were 717 live births and 290 terminations that year. In 2006 there were 1877 diagnoses, of which approximately 60% or 1132 were prenatal, leading to 749 live births and 767 terminations.
    So: in 1989 there were 318 prenatal diagnoses and 290 terminations; in 2006 there were 1132 prenatal diagnoses and 767 terminations. On the face of it, the proportion for those choosing to terminate after a prenatal diagnosis in 2006 doesn't look anything like the 92% figure.
    But - and it is an important but - the 2006 figures also reveal that in that year there were 293 cases of "Unknown Outcome" - a figure that has also been rising over the years. If a high proportion of these were in fact terminations then the 92% figure starts to look accurate.
    Last week I contacted Professor Morris to ask about this. She said: "To obtain the true proportion of women who decide to terminate their pregnancy we had to analyse a subset of the data from cytogenetic laboratories for whom we had excellent follow-up (in other words areas of the country in which we had extremely few unknown outcomes). In these laboratories we found that 92% of prenatal diagnoses were terminated." A footnote to the published tables also states that: "A large proportion of the missing outcomes are from one single large private cytogenetic laboratory in London, which analyses samples from women throughout the South East of England."
    So: there is little evidence here, according to Professor Morris, for a shift in social attitudes leading more parents to continue with a pregnancy after Down's Syndrome has been diagnosed prenatally. Some have argued that the consistency of the 92% figure over this period isn't in itself very surprising: the diagnostic tests (such as amniocentesis) carry a small risk of miscarriage and the argument is that most parents who go ahead with them are likely to be decided on termination already if a positive diagnosis is received.
    However none of this tells us much about the still large number of cases where a conclusive prenatal diagnosis isn't made. In some cases parents might have refused diagnostic testing because of the miscarriage risk or because they had decided to continue with the pregnancy whatever the outcome might be.
    What do we know about the views of parents in this last category? There has so far been little evidence. Surprised by the rising numbers, the Down's Syndrome Association conducted a survey of some of its members to coincide with the programme. In many cases religious reasons were given for continuing with a pregnancy when Down's Syndrome had been diagnosed or was a high risk. But, as we reported, a significant number also cited changing social attitudes towards people born with Down's Syndrome.
    Such evidence is interesting but inconclusive. What is more certain is that the original documentary and other reports could have included more information about the complexity of the data underneath the headline figures - as necessary qualification and context - and more fully represented the debate about how to interpret it.
    Better understanding - not just of the data and other evidence, but also of Down's Syndrome itself and social attitudes towards it for which we are all responsible - seems to be clearly needed. Primarily, though, the documentary focussed movingly, and from more than one point of view, on parents who have Down's Syndrome babies and it engaged with their experiences.

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I would just add that one of the claims made by Ben Goldacre in his Bad Science blog and Guardian column is that when Professor Morris issued her clarifications after the story was initially covered in newspapers and online, "everybody ignored them, nobody has clarified". That's not true - our website's health pages were updated as soon as we had spoken to her.

Comments

  • Comment number 1.

    My first paying job as a scientist was carrying out prenatal checks for Downs and Spina Bifida.

    Your article is partially incorrect. ONLY amniocentisis carries a risk of miscarriage. The other diagnostic tests including maternal blood hCG measurement and ultrasound do not.

    On a wider note I'd suggest that the rise in babies with Downs is linked to the cost of living forcing couples to have children later in life. For an 18 year old the chance of a Downs baby is about 1 in 3000. For a 44 year old mother its one in 16. Even delaying starting a family for a couple of years increases your chances a lot.

  • Comment number 2.

    In Ben Goldacre's column he links to NHS Choices 'Behind The Headlines' section. They state:

    "Is the reported change in attitudes really so stark?
    Probably not. Although the number of Down’s syndrome babies being born is up 4% since testing was introduced, it would have been expected to jump by an estimated 50% had testing and termination not been available (about 700 additional Down's births in 2006). This is because many women now have babies later in life when the chances of having a Down’s syndrome child are considerably greater.

    Currently, 92% of women who receive an antenatal diagnosis of Down’s syndrome decide to terminate the pregnancy. This proportion has not changed since 1989, according to a report by the National Down Syndrome Cytogenetic Register."

    This seems fairly clear to me. Why is it that when incorrect or mis-leading data is given it is always over-simplified and badly quoted or sourced but when corrections (if this article can be called that) are provided they over complicate an issue.

    Also, as the survey asking the reasons why people with down's baby decided not to terminate has been carried out only once, how does it indicate that more parents feel society takes a more positive attitude to Down's Syndrome as suggested in the original articles headline 'Society 'more positive on Down's'?

  • Comment number 3.

    Can someone please explain to me exactly how you measure "changed attitudes" in society based on such a small subset of people and given that none of the participants has a chance to measure the REALITY before a baby is born?

    Is this not a case of trying to make a story out of nothing?

  • Comment number 4.

    Changing attitudes are happening towards people who are born with Down Syndrome...

  • Comment number 5.

    #4

    With respect "Changing attitudes are happening..." is a silly statement.

    Attitudes change from moment to moment but a "trend" arises from significant statistical evidence. The figures produced here do not indicate "significance" - they indicate confusion over how slight variations in the evidence should be judged.

    It would seem to me that any woman pregnant with a Down Syndrome baby has the same decision to make as any other woman who is pregnant and that relates to subjective ability to cope. If the article is suggesting that there is now more social support for Down Syndrome children then surely there are other ways of demonstrating this statistically.

  • Comment number 6.

    According to the DSA about one in three parents elected to continue with a pregnancy because they considered DS to be a condition that did not necessarily affect quality of life.

    Over 50% of those consulted said they did not believe they would have a child with DS and so continued on with the pregnancy which presumably, along with pro-life considerations, has been the main reason for continuing pregnancies both now and in the past. Reading the analysis suggests that this is true in over four out of every five cases.

  • Comment number 7.

    To change any attitude in society to anything better needs attention as to what is causing the 'bad' attitude in the first place. Without knowledge of the cause change fails to continue successfully.

    Society has changed socialogically, financially, politically, environmentally, medically,culturally and religiously as the years have passed by, more quickly recently than ever before.

    With regard to Down's Syndrome, so named after the Doctor Down who discovered that 23rd chromosome linked to two other associated defects, I feel that now the problem is more a psychological one. It is dealing with the title in relation to its meaning in general, coupled with the expected failure to cope in today's world.

    Just like the term 'mental illness' which should be renamed 'Life Problems Syndrome' which everyone can identify with. This is only to take the word 'mental' out of it which is the 'unseen, unknown factor'. Likewise the word Down has so many connotations attracting social rejection before you start with anything else in all spheres of thought. Also not many people know why those children are so named from history of Dr J Down.

    In the 1967 Abortion Act implemented in 1968 there were 4 factors for its use and one of those was if the birth would result in damage to the other siblings. The latter are rarely considered, in favour of the mother only which is so wrong. It is better nowadays, but still needs more attention and consideration especially in relation with the coping skills that the mother needs to have.

    Nature itself naturally rejects babies that will not survive in the form of a miscarriage or stillbirth in many cases, and this can be no fault of the mother or father llike any birth defect. It's just the way nature deals with things. Parents need to know it is not a failure on their behalf and neither is the child born with a defect a reflection of those parents failure as men and women, physically or sexually. It is a test though to challenge their ability to deal with what or who they have in life, and so prove their ability to succeed in that life, from conception onwards.

    As a midwife I was against abortion yet as the sister of a Down's baby, I was so glad that she had shown me how much lives can be enriched to care when families and society can accept disability as a part of life. No human is perfect in all respects, like it or not. Sadly she was born in an age where operations were rejected for mongols and society didn't want to see her without having someone to laugh at or make jokes about. Why? Through plain ignorance and wanting to feel that they were 'better and higher' socially and mentally in the system.

    There are many problems attached to raising any child in today's society but I know that if I was in a position to choose between a 'hateful' spiteful, hurtful healthy child and a 'loving', gentle, kind happy child I would have no hesitation in making the right decision. I couldn't have an abortion.
    I could try to teach how to care though, with support, love and a little help from my friends and family.

    'We are ALL God's children'.(Creator of the Universe, and everyone and everything in it)

  • Comment number 8.

    i worked with ppl with Trisomy 21 in a variety of care homes for over 15 yrs, if any of my children were diagnosed with trisomy 21 i would have wanted a termination, after working with these ppl for 15 yrs i have my reasons for my decision, which some who havnt the experience i've had would say im ignorant for thinking, so i wont share them with u.

  • Comment number 9.

    bansis,

    I have worked with adults with disabilities for over 16 years (many have had down syndrome). I have two teen daughters with T21.

    I'm not ignorant, as I know more side's then you will ever know.

    The thing is there are ALWAYS going to be people who terminate. Some because their child is the wrong sex. It is a sad reality that many people aren't fit to be parents.

  • Comment number 10.

    I dont know how anyone could consider terminating just because there is a chance of downs syndrome. My nephew has downs syndrome and he is just the happiest person you would ever meet. Ok i suppose it mihgt be hard to come to terms with, and i suppose the decision is with the parents, but it's no wonder the termination rates are going down as it really is more widely accepted now i think.
    Alan

  • Comment number 11.

    Likewise the word Down has so many connotations attracting social rejection before you start with anything else in all spheres of thought turner

  • Comment number 12.

    Down’s Syndrome – Give Life a Chance!

    When Monica rang me at home from hospital after Christopher’s birth, which I was present for, she asked me to come back into hospital on my own and not to bring any flowers or chocolates. I feared from her voice and instructions that something was wrong, which she confirmed when she told me that Christopher had Down’s syndrome. The midwife/nurses who recognised the physical signs at birth, decided to let Monica get a good night’s sleep after a long and difficult labour, before breaking the news to her. We were both absorbing the news and I’m ashamed to say now, very much in shock, when a doctor sat down with us and asked with her first question, whether we were going to keep our child. I was almost as shocked by the question as I was by the news that our son would ‘never be normal’. The doctor explained that the question had to be asked because from experience she knew that some or many parents, I can’t remember exactly how she quantified it, choose to give up their child at such a time because of the diagnosed disability. In those brief few minutes of revelation to this day, we have never ever thought of giving our precious son up.

    Monica, who gave birth to Christopher our third child when she was 38 years of age, was never tested to see if she was carrying a child with Down’s syndrome, but as I said to BBC Radio Kent on their live breakfast show on the subject of Down’s syndrome and abortion statistics, had we known, as Catholics and Pro Life supporters, I believe we would have decided not to abort but to have the beautiful child who has blessed every day of our lives since his birth.

    I earlier referred to being ashamed at being in shock on receiving the news that Christopher was born with Down’s syndrome, because with aspirations shattered, we found ourselves thinking of all the things he would never be able to do, of all the opportunities open to his brother and sister later in their lives that Christopher would never enjoy. Our minds had been flung into negative gear and seemed to be stuck there feeling sorry for Chris and perhaps ourselves, but after encountering the support of family and friends, the Down’s Syndrome Association and Mencap, who were all marvellous in targeting us with the support we needed, we changed gear and slowly started to move forward, instead concentrating on what could be achieved and how best to support his development. The support organisations we encountered were obviously aware from the start that the parents of children with special needs have special needs themselves and supported us, accordingly.

    Chris is now 24 years of age and I know from following the progress of the DSA’s education campaigns targeting the parents of newly born children with Down’s syndrome, that the education and support package which was already good when Chris was born, has continued to grow and improve since then. What I’m not familiar with is what information/guidance finds its way into the hands of parents whose child is diagnosed with Down’s syndrome whilst still in the womb. We know from personal experience, how the trauma of finding out that the child one is expecting has Down’s syndrome, can cloud thinking and throw ones thoughts and perhaps actions into turmoil, so it’s vitally important that such parents are supplied with all the support they require at this stage, before it becomes too late to help them and save the life of a precious being. Is having a family that conforms to the norm, whose children are all above a certain level of IQ, who might walk and talk without problem, whom are mainstream rather than ‘special’, the deciding factors for parents in terminations? Or is it the parents’ perception of their ability to cope with disability and difference and labelling and a myriad of other issues, including good parenting in a society that celebrates and rewards achievement and competition, which tips the scales against the unborn child with Down’s syndrome? Whatever the factors and I accept that they are many and varied, if correct the 92% termination rate poignantly shows that more needs to be done to educate people in general that it’s ok to be different – it doesn’t make one any less valuable as a member of society or any less loving or worthy of love in return – such education needs to start in the home and at school, well before couples are ever faced with the choice. Until we reach a stage in our development where we celebrate difference and diversity, normal and special, embracing the sanctity of all life, such dreadful statistics will continue to taint society.

    Christopher has given us the chance to enjoy a family life that wouldn’t be as rich or complete without him and we thank God for every day of his life, just as we do for the lives of his siblings. His achievements include being the first child with Down’s syndrome to attend a mainstream primary school in NW Kent, the first child with Down’s syndrome to attend full time at a mainstream secondary school in Bexley – both schools were catholic. Christopher is a senior altar server with 17 years experience at our local church: St, Vincent’s RC, Dartford. He has been instrumental in effecting major change in disabled access policy and free carer concessions for people with learning difficulties. Earlier this year, he held a one man photography exhibition at the Mick Jagger Centre and has exhibited his images at the OXO Tower Gallery and the Proud Gallery, London. In July of this year he gave a speech on his photography to 900 pupils and staff at Dartford Grammar School and in October/November he exhibited an image in the Project Volume Exhibition at the Truman Brewery Gallery, Brick Lane.

    To learn more about Christopher go to: www.christopher-diedo.co.uk and
    http://www.bbc.co.uk/kent/content/articles/2009/05/13/christopher_diedo_feature.shtml

    Andrew Diedo, Dartford, written 27th October, 2009

 

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