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13,076

Posted in Attitudes to disability, Screening, Statistics by Matt at WelcometoIllinois on September 5, 2009

There are a lot of statistics thrown around related to prenatal screening and Down’s syndrome, such as the percentage chance that the baby has Down’s syndrome, the accuracy of the test itself, the number of diagnoses, the percentage of diagnoses that result in termination, and the number that result in live births.

One statistic that I have never seen is the total number of prenatal diagnoses that resulted in termination. Thanks to the UK’s National Down Syndrome Cytogenetic Register the figures are there to be calculated, however. You’ve probably already guessed that I’ve done just that. Since screening tests were introduced in the UK the total number of prenatal diagnoses of Down’s syndrome that have resulted in termination in England and Wales is 13,076.

To put that figure in context, the NDSCR figures indicate that in the same period an estimated 12,641 children were born with Down’s syndrome. Even if you assume a miscarriage rate of 2.8% (the average over the same period) that means that since it began the UK’s prenatal screening programme has directly led to more terminations of children with Down’s syndrome (12,710) than have been born with Down’s syndrome.

Incidentally, 12,000 people looks like this:

It’s hard to discuss statistics like this without making some sort of moral judgment. That’s when things start to get difficult. Personally, I support the right of those 26,000 or so parents to reach whatever decision is best for them from the choices that are available. And I think it is important to remember that for the majority of those parents the decision to terminate will have been an extraordinarily difficult moral dilemma.

That said it is possible to separate the individual from the collective, and I would question whether we, as society, should comfortable with a programme which has specifically targeted and prevented half a potential population of people from being born.

DownsEd has estimated that there are over 40,000 people with Down syndrome live in the UK, so whether the true figure is 13,076 or 12,710, or somewhere in between, we are talking about a significant percentage of the total Down’s syndrome population.

The question is particularly relevant since, as noted by DownsEd, “there has been no parliamentary discussion or law on screening in Britain”. I have also previously noted that there are real doubts among ethics professionals about whether screening for Down’s syndrome is event ethical, and a 2003 report on the subject stated that “screening was introduced [in the UK] based on small scale preliminary studies and without ethical review.”

Debate on the ethics of screening is long over-due, especially with the news that the UK’s National Health Service has begun a program to develop non-invasive blood tests that will reduce the risk of ante-natal testing and the fact that the working group considering the potential use of such methods has warned that “a possible consequence of increased testing is more terminations, which could in turn result in increased social pressure to terminate, particularly if the diagnosed conditions were to become rarer in society resulting in a decline of support services.”

Fortunately, there has probably never been a better opportunity for the debate to occur, with the recent formation of the All Party Parliamentary Group (APPG) on Down’s syndrome.

Even without wider societal debate, however, what is needed at an individual level is better information for parents that helps them to make a difficult decision following prenatal diagnosis from a position of knowledge and understanding, rather than rear and doubt.

There is also hope for the too, with the APPG adopting the Down’s Syndrome Association’s campaign to improve information for parents.

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  1. […] use rehashing his excellent post here, just click to read more. Posted by Lito Ramirez (Follow on Twitter @Lito_Ramirez) Filed in General Tags: Down syndrome, […]


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