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         MAY 2016


1605 image news

Don’t Screen Us Out Parliament Demonstration

We reported in January’s image news@ on a new screening blood test which has inadvertently caused more problems than the one it was designed to solve. The “NIPT” blood test is non-invasive and makes use of cell free DNA from the fetus (cfDNA) circulating in the mother’s blood.

The new technique is being heralded as a move to reduce the number of miscarriages associated with invasive amniocentesis, with a National Screening Committee pilot study predicting that it would result in 25 fewer miscarriages 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 (DS) every year. Based on the current 90% of pregnancies that are aborted following a diagnosis, this would mean an increase of 92 abortions for Down’s syndrome annually.

Don’t Screen Us Out is a campaign highlighting concerns over the proposed use of  the “NIPT” blood test and on Sunday 18th April they organised a rally outside Parliament  led by individuals with Down’s syndrome and their families affirming the dignity and happiness that people with disabilities can enjoy, and protesting proposals to introduce the discriminatory new screening technique.

A recent UN report from the International Bioethics Committee of the United Nations Educational, Social, and Cultural Organisation has issued a stern warning about the drive to adopt NIPT in national screening programmes. The proposal also violates the UK’s treaty obligations to 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.

Sarah Hoss, spokeswoman for Future of Downs, said, “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 (chromosomal abnormality in which there is one more than the normal number of chromosomes in a cell ) is identified during pregnancy. Many of us also feel that the abortion limit should be the same for all babies and not be allowed up until full term as the law currently allows. Many parents feel that the focus on testing and terminations makes life more difficult for them if their new their baby has a trisomy.

“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.”@

Don’t Screen Us Out encourage people to, “Take action now and ask your MP to halt the introduction of this implementation before it’s too late.”@