Parliamentary rally held against new Down’s syndrome test
18 April 2016
The protestors called on Jeremy Hunt not to "screen them out"
Individuals with Down's syndrome and their families have held a rally outside Parliament today to protest against a discriminatory new pre-natal screening proposal.
The new screening technique, which has yet to be introduced, is expected to lead to a marked increase in the number of children with Down's syndrome aborted because of their condition.
The rally was organised by the Don't Screen Us Out campaign.
Currently 92% of babies diagnosed with Down's syndrome before birth are aborted, and the 1967 Abortion Act allows for abortion up to birth in the case of disability in England, Scotland and Wales.
"Don't screen us out"
The protesters gathered outside the Houses of Parliament between 10:30 and 12:30 asking Jeremy Hunt, the Health Secretary, not to "screen them out". They also called on the Government to increase support for people with Down’s syndrome and their families, and to ensure the provision of balanced information for parents with a pregnancy diagnosis of Down's syndrome.
The rally included speeches from people with Down's syndrome, parents and leaders from key Down's syndrome advocacy groups. Sally Phillips, who starred in the Bridget Jones's Diaries films as well as the hit TV show Miranda, and who has a son with Down’s syndrome, addressed the crowd via a live audio cross from Pinewood Film Studios.
The new technique, called 'cell-free DNA' testing, is being heralded as a move to reduce the number of miscarriages associated with amniocentesis, with a National Screening Committee pilot study predicting that it would result in 25 fewer miscarriages per year.
Some of the young people who attended the rally
92 more abortions per year
Yet proponents of the test have glossed over the fact that the same pilot study predicts that the new screening will detect 102 more babies with Down’s syndrome every year. As more than 90% of unborn children diagnosed with Down's syndrome in the womb are aborted following a diagnosis, this is likely to mean an increase of 92 abortions for Down's syndrome annually.
That would mean an overall decline of Down’s syndrome live births by 13% and would lead to a corresponding reduction in the number of people with the condition in the UK. Such an outcome is likely to have a profoundly negative impact on the community of people with Down’s syndrome.
A recent report from the International Bioethics Committee of the United Nations Educational, Social, and Cultural Organisation (UNESCO) has issued a stern warning about the drive to adopt Non-Invasive Pregnancy Testing (NIPT) in national screening programmes. The proposal also violates the UK's treaty obligations under the UN Convention on the Rights of Persons with Disabilities (CRPD) to make sure that its health policies - including antenatal screening - are informed by and reflective of a 'social model' understanding of disability.
The crowd included individuals with Down's syndrome and their families
'Support parents and families instead'
Lynn Murray, UK lead for Saving Downs and spokeswoman for the www.dontscreenusout.org campaign, said:
"We call on Jeremy Hunt to delay the implementation of these new tests till medical reforms are effected to remove the negative effects it would have on the community of people with Down's syndrome. As a parent of a teenage daughter with Down's syndrome, I've had 16 years of seeing the effects of screening on the lives of people with Down's syndrome and their families.
"These new tests will make this situation worse, not better. 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."
Christine Elliot, spokeswoman for the Down Syndrome Research Foundation, also commented:
"We face the biggest challenge for the existence of anyone who will ever be diagnosed with Down's syndrome. The promise of innovation in the new NIPT test are nothing of the sort for unborn people with DS, it will be their certain demise in 9 out 10 pregnancies. Solely due to a diagnosis that is commonly delivered in an outdated and fear mongering manner.
"We call upon all people to reject this normalised discrimination that has been accepted without thought or question."
Protestors at the rally called for greater support for parents and families
Sarah Hoss, spokeswoman for Future of Downs, added:
"It is important that families are provided with support and up to date information about the condition so that they feel empowered to make informed choices when it comes to undergoing tests and not feel pressurised into having terminations when a trisomy is identified during pregnancy."
"A more diverse society"
She went on to say:
"Many parents feel that the focus on testing and terminations makes life more difficult for them if their new baby has a trisomy. Personally I believe that people with Down's make for a more diverse society and that people with DS require respect and support to become more independent and live satisfying lives. The life expectancy of people born now with DS is similar to the general population. People with DS and their families need to be heard and contribute to the decision making around tests and the government needs to hear what we are saying."
"No life is more precious than the other"
Maggie Hart, spokeswoman for The Education Centre for Children with Down's Syndrome, said:
"No life is more precious than the other. There is an assumption that Down's syndrome could be eradicated – a scary thought to think where this will end."