The truth: why Down’s births have gone up
The idea that more Down’s syndrome births show that Britain has become more ‘caring’ is severely misleading.
Is it really the case the increase in babies being born with Down’s syndrome in Britain shows that we live in a more caring society? This was the impression given by much of the national press last week, with headlines such as ‘Society “more positive on Down’s”’ and ‘Down’s births increase in a caring Britain’. But first impressions can be misleading – and in this case, readers could have been misled on a number of levels.
First, take the claim that there are more babies being born with Down’s syndrome today than since widespread pre-natal testing for the condition began, in around 1989. Figures from the National Down’s Syndrome Cytogenetic Register (NDSCR) show that the number of babies born with Down’s fell from 717 in 1989 to 594 at the start of this decade, but rose to 749 live births of children in 2006 (1).
These figures are correct – but the way that they were interpreted was not. Carol Boys, the chief executive of the Down’s Syndrome Association, said in a press release that she was ‘very surprised’ by this trend, and that: ‘It seems to show that more parents are thinking more carefully before opting for prenatal screening and termination – that being born with Down’s syndrome is being seen in a different light today.’ (2)
In fact, the figures do not show that parents are ‘thinking more carefully’ and therefore choosing to continue with their pregnancies. According to Professor Joan Morris, director of NDSCR, which is based at the Wolfson Institute of Preventive Medicine in London, it simply shows that more women are having children later, with a consequently higher risk of Down’s syndrome.
A crisply-worded press release put out to correct the misinterpretation of the figures pointed out that, while it is correct that the numbers of Down’s syndrome live births in England and Wales increased by four per cent from 1989 to 2006, since 1989 there has been an increase in the age at which women become pregnant: in 1989 six per cent of pregnant women were over 35 years of age; by 2006 this figure was 15 per cent (3). The risk of a Down’s syndrome pregnancy is 16 times greater for a 40-year-old woman than a 25-year-old woman. NDSCR calculates that, due to this increase in maternal age, ‘the number of Down’s syndrome live births would have increased by over 50 per cent from 1989 to 2006 if antenatal screening, diagnosis and subsequent terminations had not been available’. This would have resulted in an estimated 1,454 Down’s syndrome live births in 2006, instead of the actual 749.
Furthermore, NDSCR notes, since 1989 the proportion of women having antenatal screening has increased, as has the number of antenatal diagnoses of Down’s syndrome. It remains the case that 92 per cent of women who have an antenatal diagnosis of Down’s syndrome decide to have an abortion, and this proportion has not changed since 1989.
In summary, then, the press release states: ‘The effect of the increase in the age women have their babies on increasing the incidence of Down’s syndrome pregnancies is approximately balanced by the decrease in the birth prevalence due to a greater proportion of pregnant women being screened and having a termination of pregnancy.’ Professor Joan Morris later told Reuters: ‘I’m pretty annoyed with the Down’s Syndrome Association that seem to have totally got the wrong end of the stick.’ (4)
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Unfortunately, it was not only the Down’s Syndrome Association that chose to interpret these statistics in a particular light, but uncritical reporters across the British media (with the exception of Reuters). This indicates the problem with advocacy research being accepted as fact, and the lengths to which media organisations will go to promote their own stories.
The reason the National Down’s Syndrome Association had a press release dealing with this issue was because it had conducted a survey of its own parent members about why they chose to go ahead with their pregnancies rather than opt for a termination, the results of which were due to be released in a BBC Radio 4 documentary, titled Born With Down’s, on Monday 24 November (5). The BBC released this research in advance of the programme, to publicise its documentary – which is presumably how the story ended up everywhere in the UK media.
There is nothing wrong with having a discussion about those parents who know, as a result of antenatal testing, that they are likely to have a baby with Down’s syndrome, and discussing why those parents came to the decision to continue with the pregnancy. The documentary itself made some interesting points in this regard, the most revealing of which is that there is no one reason why parents decide to have a baby with Down’s syndrome – people make highly personal decisions in the context of their own lives; they do not seek to make grand statements about disability or anything else. But having this particular discussion is very different to attempting to generalise about all parents’ decision-making, or the extent to which society has become ‘more caring’.
As the National Down Syndrome Cytogenetic Register makes clear, the vast majority – 92 per cent – of pregnant women given a pre-natal diagnosis of Down’s syndrome go on to terminate the pregnancy. Should we infer from this that these women are not ‘caring’, or that they are not ‘thinking carefully’ about their decision? Of course not. Women who have abortions for fetal abnormality wrestle with their decisions in much the same way as do those who continue their pregnancies knowing that they will have a disabled child. They are forced to take into account the impact that having a baby with Down’s syndrome will have upon their lives and those of their other children, and recognise that – as indeed some parents indicated on the Radio 4 documentary – the reality of raising a disabled child can be very hard, particularly when the child grows older.
To (mis)interpret statistics in such a way that implies that women are not terminating pregnancies for Down’s syndrome because they, or society at large, have become nicer is an insult to those women and their partners who have made the decision to abort a fetus for Down’s syndrome.
It is worth noting that despite the advances in pre-natal testing that have already occurred and those that lie on the horizon, which will allow diagnoses of Down’s to be made earlier in pregnancy and through a blood test rather than the invasive methods of amniocentesis or chorionic villus sampling (CVS) that are currently used, not every woman with a diagnosis will decide to terminate her pregnancy. But all this finding should do is assuage the fears held by some of the disabled lobby, such as campaigner Tom Shakespeare (6), that better pre-natal testing will lead to ‘eugenics’ and the disappearance of certain conditions. Just as we respect the decisions made by parents of children with Down’s syndrom, so we should respect the decisions made by those who opt for termination. But before we do or say anything, we should make sure that we get our facts right.
Jennie Bristow is editor of Abortion Review, where this article first appeared. She is also author of A Guide to Subversive Parenting.
(1) Society ‘more positive on Down’s’, BBC News, 24 November 2008
(2) ‘Births with Down’s Syndrome increase’, Down’s Syndrome Association Press release, 24 November 2008
(3) Down’s Syndrome Live Births in England and Wales (1989-2006), Wolfson Institute of Preventive Medicine, 24 November 2008
(4) Down’s Syndrome numbers don’t add up, Reuters blog, 24 November 2008
(5) ‘Born with Down’s’, BBC Radio Four, 24 November 2008
(6) Are we really more accepting of Down’s syndrome?, Guardian, 24 November 2008