24 November 2008

Confusion around Down's syndrome

Media reports have wrongly attributed an increase in the number of babies born with Down's syndrome to changing attitudes.

The number of babies born with Down's syndrome has risen for the first time, nearly two decades after pre-natal screening.

Figures from the National Down's Syndrome Cytogenetic Register show that the rate has risen by around 4% since screening was introduced in 1989. The rate decreased in the decade after screening was introduced, but has increased by 15% since 2000.

Some media reports attributed the rise to a change in attitudes, leading to fewer screenings and fewer terminations. However Professor Joan Morris, director of the National Down Syndrome Cytogenetic Register, has issued a statement refuting this.

Since 1989 there has been an increase in the age women become pregnant. As the risk of Down's syndrome pregnancy increases with the mother's age, the number of babies with Down's syndrome would have increased by over 50% from 1989 to 2006, if screening had not been available.

Instead, the proportion of women having antenatal screening has increased. And 92% of women who have an antenatal diagnosis of Down's syndrome decide to have a termination of the pregnancy – the same proportion as in 1989.

The decision to go ahead 

In other research, the Down's Syndrome Association carried out a survey of 1,000 parents to find out why women decide to go ahead with their pregnancies. It asked why they had opted to continue with their pregnancy following a positive test.

The survey's results were the basis for the Radio 4 documentary ‘Born with Down's' which was aired on Monday 24 November 2008.

A third of those surveyed cited religious or anti-abortion beliefs, 25% said had known somebody with Down's syndrome and 35% felt that life had improved for people with the condition.

One parent said: "I don't subscribe to the notion of the ‘perfect human being' and found the idea of selecting one child in preference to another abhorrent."

Listen to the Radio 4 documentary Born with Down’s