Petition signed by over 900 people with Down’s syndrome and their families opposing “discriminatory” prenatal screening proposal delivered to Jeremy Hunt

Oct 13, 2016 | Media

People with Down’s syndrome and their families deliver petition signed by over 900 people with Down’s syndrome and their families opposing “discriminatory” prenatal screening proposal to Jeremy Hunt asking him to not ‘screen them out’

Individuals with Down’s syndrome and their families delivered a letter to Jeremy Hunt at the Department of Health yesterday, signed by over 900 people with Down’s syndrome and their families, to protest proposals to introduce a discriminatory new screening technique which is expected to lead to a profound increase in the number of children with Down’s syndrome screened out by termination.

The presenting of the letter was followed by an event in Parliament where people with Down’s syndrome gave speeches, and an expert panel discussed poignant questions about the ethics surrounding the new screening for Down’s syndrome.

Those gathered called on Jeremy Hunt to listen to the concerns of parents of those with Down’s syndrome who are yet to be consulted. This must occur before any decision is made to introduce the new screening. 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.

Sally Phillips’s BBC documentary, which aired on 5th October, has put the issue of screening and unbalanced information being provided to parents with a diagnosis of Down’s syndrome on the national agenda – people with Down’s syndrome and their families are now taking action to put this firmly on the political agenda.

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”.

Heidi, a young woman with Down’s syndrome and spokeswoman for the Down 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”.

Jane Jessop, Founder of the Blue Apple Theatre Company:

“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”.

Lynn Murray, spokeswoman for the ‘Don’t Screen Us Out’ campaign, said:

“As a parent of a teenage daughter with Down’s syndrome, I cannot believe how much families have been sidelined in this whole debate around prenatal screening. We have not been consulted despite our constant requests that our voices be heard by the Department of Health. We went to the Department of Health to send a strong message to Jeremy Hunt that the lives of our children are valuable and that the UK government should be putting its energy behind providing real support for our families and other parents who are expecting a child with Down’s syndrome”.


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