A new study shows that many more babies are being born with Down syndrome today than 15 years ago, despite universally available genetic screening – and more people with the condition are living longer and richer lives than ever before.
The study questions the ethics of screening, saying it poses risks to babies who do not have Down syndrome. The new analysis estimates that screening leads to the deaths of 400 babies who do not have Down syndrome annually in England and Wales alone.
"It is often assumed that fewer babies are now born with Down syndrome," says Frank Buckley, the CEO of Down Syndrome Education International and co-author of the report. "This is not true – births of babies with Down syndrome have risen 25% in 15 years in England."
At the same time, life expectancy and quality of life continue to improve. "More people are living with Down syndrome than ever before, with more than 600 000 across Europe and North America and maybe 4-million worldwide," he says.
"There is still much more to do, but people with Down syndrome are achieving more thanks to better healthcare, better opportunities and more effective teaching approaches."
Around 95% of all 'positive' screening results are wrong, although women who receive these results are encouraged to consider invasive tests. Between 1 in 100 and 1 in 50 pregnancies tested in this way are miscarried as a result of the tests.
Down Syndrome Education International is calling for further research and better support for people living with Down syndrome. The charity is also calling for reviews of screening policies and wider debate about the acceptability of genetic screening for mental and physical abilities during pregnancy.