Down's syndrome community urges Health Secretary not to screen them out
Individuals with Down’s syndrome and their families delivered a letter to Health Secretary Jeremy Hunt on Tuesday, asking him not to screen them out through the introduction of new pre-natal testing.
The letter, signed by over 900 people with Down’s and their families, protests against proposals to introduce non-invasive pre-natal testing (NIPT), which is expected to lead to an increase in the number of babies with Down’s syndrome being aborted.
After giving the letter to Jeremy Hunt, an event was held in Parliament, at which people with Down’s syndrome gave speeches, and an expert panel discussed questions about the ethical concerns about NIPT.
Urge to consult those with Down's
The letter asks Jeremy Hunt and his department to stop ignoring the concerns of people with Down’s syndrome, their family and friends, and to consult with them before the screening is introduced.
Parents also called for increased support for people with Down’s syndrome and their families, and the provision of balanced information for parents with a prenatal diagnosis of Down’s syndrome.
The parliamentary event comes after Sally Phillip’s poignant and thought-provoking documentary on the new screening method, ‘A World Without Down’s Syndrome’, which aired on 5 October on BBC 2.
Her documentary has put the issue of screening, and the unbalanced information that is being provided to parents with a diagnosis of Down’s syndrome, on the national agenda.
'They don’t have the full facts'
Amongst those present at the event included MPs, representatives of Down’s syndrome research and advocacy organisations, and those who have Down’s syndrome.
Speaking of the Don’t Screen Us Out campaign, Alex Chalk MP, said:
"The real point that we want to communicate, and the real point which resonated with me, is that as we look at this Don’t Screen Us Out, there is a real concern that parents who are to receive information about a diagnosis of Down’s syndrome – do they properly understand what actually living with a Down’s syndrome child is?
"Do they assume – because they don’t have the full facts – that it is a life of hardship… Well, the concern is that they don’t have the full picture. And you being here is such an important part of sending the message out that there is a wonderful life to be lived in families with children with Down’s syndrome, and that is a critical part of the context in which we view the science".
'We should value people for who they are'
Heidi, a young woman with Down’s syndrome and a spokeswoman for the Down's Syndrome Research Foundation, said:
"The things people are saying are making me cry because people don’t value us like they should. I think people should value everyone, we should value people for who they are not for what they achieve".
'This is an incredibly serious issue'
Jane Jessop, Founder of the Blue Apple Theatre Company, said:
"Parents to be should be given up-to-date and accurate information about the quality of a life of a person with Down’s syndrome before they make a decision about termination. Is this happening? No. We know anecdotally it’s not happening. And we believe it can’t be happening, because so many babies would not be being terminated… Why is this happening?
"This is an incredibly serious issue as we all agree, and something has to change. The trouble is that medical advice is often out-of-date. Medical professionals probably only see people with Down’s syndrome when they’re ill and below par. Some may never have met anyone who has Down’s syndrome. They still talk about out-of-date stereotypes, but life for someone who has Down’s syndrome is changing".
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