Don't Screen Us Out! Halt Discrimination Against People with Down's Syndrome
UPDATE: (05/10/2016) The Royal College of Obstetricians and Gynaecologists (RCOG) has been lobbying the UK National Screening Committee (UKNSC) to introduce a new screening technique which is projected to see an increase in the number of abortions for children with Downs Syndrome.
What they are lobbying the government to do here is a cost benefit analysis that includes cost of caring for people with Down's syndrome, implying that it could be cheaper for society to use the expensive test to detect and then selectively abort them in the womb, than let them live. This is financially driven eugenics.
In response to the UKNSC consultation regarding this test the RCOG said:
"The UKNSC is consulting on offering cfDNA testing to women with a 1 in 150 or greater risk of trisomy. The decision NOT to offer cfDNA testing to all women (primary screen) is based upon the cost (“the UKNSC were concerned that this represented a large opportunity cost and that these resources might be better used by the NHS”). If the decision has been made primarily on cost grounds, then a more rigorous economic analysis has to be made that includes the lifetime costs of caring for children and adults with Down’s syndrome (bearing in mind that cfDNA testing as a primary screen test will identify approximately 289 more babies with trisomies). Such an economic analysis may (or may not) suggest that cfDNA testing for all is cost-effective."
For the lack of support for families who have a child with Downs Syndrome watch:
UPDATE: (09/08/2016) The Department of Health is set to push through this new screening technique which could see the almost complete extermination of people born with Down's Syndrome in the UK.
1. The Government has admitted that “no assessment was made of the impact of NIPT on the number of abortions, Down’s Syndrome community and medical professional and society's attitudes towards people with Down’s syndrome.”
2. There is a substantial conflict of interests as some of those pushing for this new test stand to gain financially from it.
• The UK National Screening Committee (UKNSC), who are responsible for advising the Government “about all aspects of population screening and supports implementation of screening programmes”, have approved this new test.
• One of a handful of experts on the UKNSC, Jane Fisher, is also the Director of ‘Ante-Natal Results and Choices’ (ARC)
• ARC in turn receive funding from the biotech companies and testing providers which will gain most from the implementation of this new screening technique. Implementation of this screening technique across the NHS will open up a huge new market over-night for these companies.
In short, at the same time as the UK National Screening Committee is advising the Government to implement this new screening technique, some of its members could gain a lot of money from it. The UKNSC’s judgement therefore, cannot be trusted because we have reason to believe that some are motivated in their decision by profit and not by best medical practice.
Now, the Down syndrome community are outraged about never being consulted on this move and have mobilised behind an open letter to Jeremy Hunt which has been signed by over 500 people with Down’s syndrome, their parents and families. "Implementing cfDNA at this stage would effectively mean introducing a worsened form of informal eugenics into our culture than already exists." Because there is so little support and information about Down's Syndrome, many women choose to end their pregnancies when it is diagnosed in the womb. If proper support and information were provided, this need not happen
A new screening technique could lead to an informal eugenics where an estimated 13% decrease in live births in babies with Down's Syndrome.
The number of babies with Down's Syndrome aborted is set to increase if the UK Government follows the recommendation of the UK National Screening Committee (UKNSC) and adopts a new cfDNA (cell-free DNA) screening technique.
While the screening itself is being heralded as a move to reduce the number of miscarriages associated with invasive amniocentesis, the UKNSC have glossed over the fact that their pilot study predicts cfDNA screening will detect 102 more babies with Down’s syndrome every year, of which it is expected that 92 will be aborted.
The eugenic abortion of people with Downs Syndrome often happens because
1. Many parents whose children have been given a diagnosis or prognosis of foetal disability have experienced a presumption within the medical profession that they would opt for abortion.
2. There is a lack of information and support for parents who want continue carrying a disabled child, or for those who might be considering adoption.
The end result of this new screening technique is that certain kinds of people with disabilities would be effectively ‘screened out’ of the population before they are even born. While abortion is never the right answer, in this case, as so many others, it often seems like there is no other choice.
Sign this petition to urge Jeremy Hunt to prevent the implementation of this screening technique and ensure that better support is provided for parents who have a child with a disability.
Don’t Screen Us Out website - email your MP - www.dontscreenusout.org
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Prevent Screening Out of People with Down's Syndrome