Ethics of screening for Down Syndrome under question

Sep 17 2008

A new analysis has revealed some troubling facts regarding the universally available genetic screening test for Down syndrome.

The analysis has revealed that many more babies are being born with Down syndrome today than 15 years ago in England, despite the availability of screening.

The research questions the ethics of screening, particularly as more people with Down syndrome are today living longer and richer lives.

Useful though screening undoubtedly is, it also poses risks to babies who do not have Down syndrome and 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.

The charity Down Syndrome Education International says births of babies with Down syndrome have risen 25% in 15 years in England and Frank Buckley, the charity's Chief Executive and co-author of the report, says at the same time, life expectancy and quality of life continue to improve.

Mr Buckley says over 600,000 people with Down syndrome are living across Europe and North America and maybe 4 million worldwide and he believes while there is still much more to do, people with Down syndrome are achieving more thanks to better healthcare, better opportunities and more effective teaching approaches.

However despite these positives, government policy requires that genetic screening is offered to all pregnant women, posing risks to up to 700,000 pregnancies each year.

Around 95% of all 'positive' screening results are wrong but women who receive these results are encouraged to consider invasive tests and as a result 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 and also wants reviews of screening policies and wider debate about the acceptability of genetic screening for mental and physical abilities during pregnancy.

The report 'Wrongful deaths and rightful lives' - screening for Down syndrome by Frank Buckley and Sue Buckley is published in Down Syndrome Research and Practice and online at Down Syndrome Online on 17 September 2008 at: http://www.down-syndrome.org/editorials/2087/