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:
down-syndrome/editorials/2087/
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.
Down Syndrome Education International