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 steadily 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, they’re not. The entire founding premise of your entire twenty-seven-minute documentary is wrong.
There has indeed been a 4 per cent 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’s syndrome foetuses created in the first place, because people are getting pregnant much later in life.
What causes Down’s syndrome? We don’t really know, but maternal age is the only well-recognised association. Your risk of a Down’s syndrome pregnancy below the age of twenty-five is about one in 1,600. This rises to about one in 340 at thirty-five, and one in forty at the age of forty-three. In 1989, 6 per cent of pregnant women were over thirty-five years of age. By 2006 it was 15 per cent.
The National Down Syndrome Cytogenetic Register holds probably the largest single dataset on Down’s syndrome, with over 17,000 anonymous records collected since 1989, making it 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 women are becoming pregnant, from 1989 to 2006 the number of Down’s syndrome live births in the UK would have increased not by 4 per cent, but from 717 to an estimated 1,454, if screening and subsequent termination 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 nine 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 ‘decision’ 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’s syndrome pregnancy. This is what they are taking as evidence of a more caring society. But the figure has not changed.
Since we’ve now established beyond any doubt that the team behind this documentary got their numbers – and therefore their whole factual premise – entirely wrong, I think we’re also entitled to engage with their crass moral judgements. If I terminate a Down’s 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 create a pretty challenging backdrop for making it. This would have been true even if the programme-makers had got their figures absolutely perfect, but as is so often the case for those with spare flesh to wave at strangers, their facts and figures are simply wrong.
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 it so often does, in its 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 ‘Choice of the Day’ on the Radio 4 website.