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More People With Down Syndrome Are Being Born, Achieving More and Living Longer Than Ever Before

September 16, 2008

PORTSMOUTH, England, September 16 /PRNewswire/ — A new analysis shows that many more babies are being born with Down syndrome today than 15 years ago in England, despite universally available genetic screening. More people are living with Down syndrome today than ever before. They are achieving more and living longer and richer lives, questioning the ethics of screening. Screening also poses risks to babies who do not have Down syndrome. This new analysis estimates that screening leads to the deaths of 400 babies who do not have Down syndrome annually in England and Wales alone.

More babies are being born each year. “It is often assumed that fewer babies are now born with Down syndrome. 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,” says Frank Buckley, the charity’s Chief Executive and co-author of the report. “More people are living with Down syndrome than ever before with over 600,000 across Europe and North America and maybe 4 million worldwide. 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.”

Although quality of life continues to improve for people with Down syndrome, 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. 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.

About the report

Wrongful deaths and rightful lives – screening for Down syndrome by Frank Buckley and Sue Buckley will be 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/

   Further information   http://www.downsed.org/media/releases/2008/09/   Down Syndrome Education International  

Down Syndrome Education International works to improve education for young people with Down syndrome through scientific research and evidence-based information and support services. The charity works with families, teachers and therapists, researchers and support organisations in over 170 countries. Down Syndrome Education International’s work helps over 100,000 people with Down syndrome to achieve more every year.

Web site: http://www.downsed.org/

Down Syndrome Education International

CONTACT: Contacts: Frank Buckley, Chief Executive, Down SyndromeEducation International Email: frank.buckley@downsed.org, Office: +44(0)23-9289-3889




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