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Statistics provide mixed account of Down’s syndrome in UK

Posted in Media, Screening, Statistics, Surveys by Matt at WelcometoIllinois on November 24, 2008

It is being widely reported today that the number of children born with Down’s syndrome in the UK has increased since screening tests were introduced in 1989. However, the figures reported by the media only tell half the story.

Official figures from the National Down’s Syndrome Cytogenetic Register reported today indicate that there were 749 Down’s births in 2006 (the most recent year for which numbers are available), up from 717 in 1989 when screening tests came in (the number fell to 594 in 2000).

However, these figures are somewhat misleading, thanks to the fact that the number of diagnosed cases of Down’s syndrome has increased significantly since 1989 as well. Proportionately, less children with Down’s syndrome are born today than in 1989 or 2000.

The figures from the National Down’s Syndrome Cytogenetic Register (PDF) indicate that there were 1,033 diagnosed cases (both pre- and post-natal) in 1989, of which 717 (69%) were live born. In 2000 there were 1,369 diagnosed cases of which 594 (42%) were live born. In 2006 there were 1,877 cases of which 749 (40%) were live born.

Any suggestion that widespread screening has not had an impact on the number of children with Down’s syndrome being born is therefore incorrect.

The figures indicate that just 2% (46) of all diagnosed cases (1,877) in 2006 were prenatally diagnosed and resulted in a live birth, compared with 41% (767) resulting in termination. For 16% there was no known outcome, and it is estimated that 6% of those are likely to have resulted in a live birth. If that is accurate 5.6% of prenatally diagnosed cases of Down’s syndrome resulted in a live birth in 2006.

You won’t read any of these statistics in mainstream media, all of which have taken the results of the survey and the birth count and repeated it without any further research, despite the fact that the link to the research was published in the Down’s Syndrome Association’s press release.

As widely reported, the BBC and the Down’s Syndrome Association have put together a survey of 1,000 parents to find out why they had continued with their pregnancy. which indicates that there is a more positive view of Down’s syndrome.

According to the BBC report:

A fifth said they had known somebody with Down’s, a third cited religious or anti-abortion beliefs and 30% felt life had improved for people with Down’s. Almost one in five said they simply did not believe the results of the test.

The survey was put together to coincide with a program, Born with Down’s to be broadcast on BBC Radio 4 this evening.

See also The Guardian, The Times, and The Independent.

See also:
More on those UK Down’s syndrome stats
Reporting of UK Down’s syndrome stats irritates birth register head
Charities lead changing attitudes to Down’s syndrome
Putting Down’s syndrome statistics in context

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6 Responses

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  1. rickismom said, on November 24, 2008 at 8:48 pm

    Yes, I also pointed out elsewhere that the number in 2006 had to be compared to what was surely a larger number of births. I had been led to think, however, that the rate in 2006 was less than 2000. Thanks for the correction.

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