Response to research about pre-natal screening
Down's Syndrome Association responds to research suggesting for every three unborn babies with Down's syndrome prevented from being born, two healthy babies will be miscarried.
Carol Boys, chief executive of the Down's Syndrome Association, said:
"The Down's Syndrome Association is saddened to hear about the number of healthy babies potentially lost through prenatal screening. Losing any baby is terribly upsetting for parents, regardless of whether it is disabled or not.
"However, we have some concerns about the scientific basis of the research and feel that the focus on the number of unaffected babies lost in the diagnostic process is unhelpful to the wider social debate on screening for genetic disorders such as Down's syndrome."
Jennifer Wishart, Professor of Developmental Disabilities in Childhood at the University of Edinburgh, said:
"The ‘two for three' approach taken in the DownsEd research and headlined on Channel 4 News is unfortunate and unhelpful to ongoing debates about screening. There has never been any dispute that current diagnostic techniques have associated risk and that women need to be better and fully informed of these risks. The ‘two for three' emphasis - that two healthy babies are lost for every three babies with Down's syndrome prenatally detected - simply muddies the waters.
"While not as headline-grabbing, DownsEd's statement that the number of babies born with Down's syndrome is up 25% over 15 years is debatable; the fact that the number of babies being born with Down's syndrome is not very different from the late 80s is more noteworthy. The National Down Syndrome Cytogenetic Register attribute the lack of any marked decline in incidence to the greater numbers of women delaying childbirth until later ages in recent years. This interpretation rings true with me."
The Down's Syndrome Association calls for greater support for parents who have been affected by foetal loss. We also call for more balanced information on both screening and Down's syndrome for health professionals and parents.
Contact: John Smithies,
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0845 230 0372, 07775 774425 (out of hours).
Notes to Editors
• The report on foetal loss was screened on Channel 4 News on Tuesday 16th September at 7pm. It followed a piece in the Observer on Sunday 14th September by Victoria Macdonald, social affairs correspondent for Channel 4 News: www.guardian.co.uk/society/2008/sep/14/children.mentalhealth
• Professor Jennifer Wishart is research advisor to the Scottish and UK Down's Syndrome Associations, UK representative on the Co-ordinating Committee of the International Society for Early Intervention, a member of the International Research and Advisory Board of the Down Syndrome Research Foundation (Canada)/Jo Mills Research Awards Committee, and a member of the Scientific Advisory Panel of the World Congress, International Association for the Scientific Study of Intellectual Disabilities. Her research on development on children with DS has been funded by the Medical Research Council since 1982.
• Down's syndrome is a genetic condition caused by the presence of an extra chromosome in a baby's cells. It occurs by chance at conception.
• The Down's Syndrome Association is a national charity that exists to provide information and support for people with Down's syndrome, their families, carers and those with a professional interest. It also seeks to improve knowledge and understanding and champion the rights of people with Down's syndrome.