The UK government’s proposed cfDNA screening implementation is projected to result in a profound increase in the number of children with Down’s syndrome screened out by termination.
The latest figures tell us that 90% of babies who are prenatally diagnosed with Down’s syndrome are aborted. If then, as National Institute for Health and Research RAPID evaluation study projects, 102 more children with Down’s syndrome would be detected due to the implementation of second-line cfDNA screening (NIPT – non-invasive prenatal testing), 92 of these babies would be aborted. Based on the most recent figures for Down’s Syndrome births, this is projected to result in a decline of 13% reported live births of babies with Down’s syndrome. As opposed to the 25 miscarriages the RAPID study predicts would be prevented by the implementation of cfDNA.
These consequences would have a profound long-term effect on the population of the Down’s syndrome community, and enable a kind of informal eugenics in which certain kinds of disabled people are effectively ‘screened out’ of the population before they are even born.
The UK’s obligations under the Convention on the Rights of Persons with Disabilities (CRPD), entail that disabled people and their families should be accommodated, included, and supported by society. Yet the evidence suggests that parents of children diagnosed with disability are not given the information and help they need to choose to bear and raise their disabled child.
To introduce a screening test that would enable the increased selective elimination of children with Down Syndrome due to a lack of proper inclusion, accommodation, and support, would violate disabled rights and our ethical obligations to disabled people and communities.
As a recent report of the International Bioethics Committee (IBC) of the United Nations Educational, Social, and Cultural Organisation (UNESCO) has pointed out, “[t]he potential ethical disadvantages of NIPT can be summarised as routinisation and institutionalisation of the choice of not giving birth to an ill or disabled child”.
The cfDNA test should not be implemented into the UK Fetal Anomaly Screening Programme at this stage. Given the state of the medical system as it currently exists, cfDNA would only worsen the culture of informally eugenic anti-disabled discrimination that exists in our screening programme health services.
Many parents whose children have been given a diagnosis or prognosis of fetal disability have experienced a lack of clarity in how this has been communicated to them. Additionally, many have experienced a presumption of the medical profession that they would opt for abortion, and a lack of information and support for the option of bearing and raising their disabled baby, receiving palliative care for newborn children, or even considering adoption.
All of this constitutes a lack of accommodation, inclusion, and support for disability, and causes a culture in which parents feel pressure to abort their babies if they have Down’s Syndrome or other disabilities. If the right medical reforms were brought about that enabled support for parents, cfDNA implementation can be implemented as an uncomplicated benefit.
People with Down’s syndrome, their families and advocacy groups are concerned that the revised abortion statistics released by the Department of Health this week show a higher number of abortions for Down’s syndrome occurred in 2017 than was originally reported. The revised statistics show that......
The BMA has the backing of doctors to lobby the government to undertake a consultation on the views of the public and medical profession on new non-invasive prenatal testing (NIPT) and whether limits should be set on its use. Disability advocacy groups welcomed the passing......
People with Down’s syndrome and their families have welcomed the passing of a motion at the BMA Annual Representative (ARM) meeting which commits the BMA to actively lobby the government to undertake a consultation on the views of the public and medical profession on new......
Pregnant individuals in Wales who participate in antenatal screening are offered a triple test. Since 30th April 2018, if those test results indicate a higher chance that their baby has a genetic condition, including Down’s syndrome, they will be offered an optional second screening Non-Invasive......
The Welsh Government has announced that they are rolling out a new Non-Invasive Prenatal Test (NIPT), a screening test for Down’s syndrome, from May 2018. Unfortunately, the Government is going ahead with the roll-out without much of the due diligence that that should be attended......
Down’s syndrome advocacy group Don’t Screen Us Out have given a mixed review of the latest draft of an abortion Bill on the Isle of Man, praising its latest inclusion of information for parents who receive a pregnancy diagnosis of foetal impairment, but equally expressing......
Down’s syndrome advocacy group Don’t Screen Us Out are concerned that a proposed abortion Bill on the Isle of Man would worsen eugenic screening against children with Down’s syndrome and other foetal impairments. Whilst the current IoM abortion law already allows for abortion up to 24......
People with Down’s syndrome, their families and advocacy groups are concerned that the 2016 abortion statistics released today show an increase in the number of abortions for Down’s syndrome. The statistics show an increase from 689 abortions for Down’s Syndrome in 2015 to 706 in......
Tuesday 21 March 2017 marks the 12th anniversary of World Down Syndrome Day (WDSD), a global awareness day which has been officially observed by the United Nations since 2012. On this day events take place around the world to celebrate individuals with Down Syndrome (DS). To......
A Down’s syndrome advocacy group is urging the Manx Government to overturn a decision to introduce a new pre-natal test to screen for the condition. Don’t Screen Us Out is concerned that a non-invasive method for testing for Down’s syndrome could lead to more abortions.......
Down’s syndrome advocacy group Don’t Screen Us Out are calling on the Isle of Man Government to revoke a decision to roll-out a new-prenatal test that is projected to lead to a profound increase in the number of children with Down’s syndrome screened out by......
Campaigners are calling on the Isle of Man Government to revoke a decision to roll out a new pre-natal test for Down syndrome. The advocacy group ‘Don’t Screen Us Out’ says the procedure – which allows for more accurate and earlier detection of the syndrome......
PRESS RELEASE – FOR IMMEDIATE RELEASE Isle of Man government should revoke decision to roll-out new Down’s syndrome prenatal test without consultation and ethical review Down’s syndrome advocacy group Don’t Screen Us Out are calling on the Isle of Man government to revoke a decision......
Mencap, a charity which supports people with learning disabilities, is assisting the Nuffield Bioethics Council to gather people’s thoughts on non-invasive prenatal testing. At this time, the Nuffield Bioethics Council are interested to hear the thoughts of people who have Down’s syndrome. They intend to......
Image above: Premaitha Health receive the Investment Deal of the Year award at the BioNow awards dinner in 2014. This post has been re-posted from the blog of Dr Peter Saunders. The government yesterday approved a new test for pregnant women that will make it much......
Ministers have now given the go-ahead for a new Down’s syndrome test They claim it will help women ‘make informed’ decisions about pregnancy But campaigners fear the new test could lead to more terminations Ministers have given the go-ahead for a new Down’s syndrome test despite......
More than 100 doctors, nurses and other medics have signed letter It attacks the Royal College of Obstetricians and Gynaecologists Bridget Jones actress Sally Phillips also branded suggestion as ‘dark’ Doctors have accused a medical body of suggesting that unborn babies with Down’s syndrome should......
PRESS RELEASE – FOR IMMEDIATE RELEASE People with Down’s syndrome and their families very disappointed at Government decision to roll-out new pre-natal test without consultation and ethical review People with Down’s syndrome, their families and campaign groups are very disappointed that a new prenatal test......
Our letter signed by 900 people with Down’s syndrome and their families is delivered to the office of Secretary of State for Health, Jeremy Hunt....
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......
Join people with Down’s syndrome, their families and the wider community on Tuesday evening for an important event in Parliament. We’ll be delivering our letter, signed by over 650 people with Down’s syndrome, and their families, to Jeremy Hunt at the Department of Health. We......
2016 may go down as the year that people like our daughter Rosie become extinct. She is happy, healthy, and full of joy. Her emotional intelligence will likely be higher than most. Her IQ will likely be lower. For all this, she has every chance......
Sally Phillips’ son Olly is just like any kid. He likes ice cream and Barcelona football club. He’s energetic, loves to laugh and can often be found mucking about with his mates. He was also born with Down’s syndrome. In a new documentary, Phillips, who......
“If we deny someone the chance to be born because we’ve decided they won’t meet a predetermined measure of status or achievement, then we fail to grasp what it is to be human” “I’m going to do a blood test to see whether your son......
Sally Phillips and her husband, Andrew, didn’t find out that their first child, Olly, 12, had Down’s syndrome until he was 10 days old. Nobody noticed on the day he was born. “I had a caesarean because he was breech,” says Phillips. “I reacted badly......
Here’s a new story involving disabled people, taxpayers’ money, apparent scientific deception, a biotechnology company looking for profits, and the NHS. The NHS is close to introducing a new test for pregnant women that will make it much easier to detect and search out any......
Don’t Screen Us Out spokesperson Lynn Murray points out the difference between the actual lived reality of a life for a person with Down’s syndrome and their family versus outdated, condescending and downright discriminatory view that is presented by some others – as is so......
Channel 5 Wright Stuff host Mathew Wright delves into the ethics around rolling-out new pre-natal screening on the NHS....
Dozens of families who have children with Down’s syndrome have protested against the test, the Daily Mail has reported. Branding the test a form of eugenics, they said Down’s syndrome was not a disease that needed to be eradicated. Click here to read the full article....
Should a new test for Down’s syndrome that is projected to lead to a profound increase in the number of children with Down’s syndrome screened out by termination be introduced onto the NHS without people with Down’s syndrome and their families being consulted and the......
Scores of parents of Down’s children have demanded halt to programme They argued Down’s was not a disease that needed to be eradicated Supporters of test say it will give women choice and avoid miscarriages Families fear a new test for Down’s syndrome will spark......
The Nuffield Council on Bioethics have set-up a working group to explore the ethical, legal and regulatory implications of recent and potential future scientific developments in non-invasive prenatal testing, including its use in both NHS and commercial services. They are currently gathering views and evidence on......
We have just received the surprising news, to mixed reception, that Jeremy Hunt has been spared his job and will remain Secretary of State for Health. In response, this afternoon, we have launched an open letter to Jeremy Hunt demanding that his department stop ignoring the......
When BETH BEAUMONT EPSTEIN was born her parents were told she would never learn to read. Now, at 15, she has aspirations to go to university. Her mother HENNY explains the need for less negativity towards Down’s Syndrome It’s 4pm on a weekday afternoon, and......
Nigel Evans MP has launched an Early Day Motion which calls on the Government to delay implementation of cfDNA screening until reforms are introduced that adequately deliver early and comprehensive support for children with Down’s and their families; and urges that a formal inquiry be......
People with Down’s syndrome, their families and advocacy groups are concerned that the 2015 abortion statistics released today show an increase in the number of abortions for Down’s syndrome. The statistics show an increase from 662 abortion for Down’s Syndrome in 2014 to 689 in......
Actress Sally Phillips, best known for her role in the Bridget Jones movies, spoke out in an interview with the BBC about a new screening technique to detect Down syndrome, which the UK’s Secretary of Health Jeremy Hunt is deciding when and how to implement.......
The Department of Health is about to approve a scheme designed to bring about a world in which people like my youngest daughter will cease to exist. In January, the National Screening Committee cleared a new blood test for expectant mothers, said to be almost......
A new screening could eliminate children with Down’s syndrome – but few people want to talk about it. The question women least expect to hear when they have just given birth to a baby is: “And will you be taking her home?” But that’s what someone......
BBC Thought of The Day features John Bell reflecting on the place of people with Down’s syndrome in our society. Sally Phillips’ discussion on new pre-natal test on Thursday on the Today Show inspired this piece. My earliest memories of children with Down’s syndrome still......
A growing number of influential figures have spoken out about their concern over a new screening test for Down’s syndrome which could see 92 more babies with the condition being screened out by termination every year. At Prime Minister’s Questions on Wednesday, David Cameron responded......
Actor Sally Phillips, whose 11-year-old son has Down’s syndrome, discusses the ethical stance behind DNA screening for Down’s syndrome. The NHS may introduce a new non-invasive test that could reduce the number of miscarriages, but there are moral concerns. Click here to view the full......
Actress Sally Phillips has argued that there is a case for banning screening tests to detect Down’s Syndrome in unborn babies. The Bridget Jones’ star, whose 11-year-old son Ollie has Down’s Syndrome, argued that if we’re trying to become a more “inclusive society” such tests......
The prime minister said ‘ethical issues’ must be taken into account Campaigners have applauded David Cameron’s statement that new screening techniques must be introduced in “the right way” to confront the “ethical issues” around testing the unborn for Down’s syndrome. A new screening technique has been......
Myths about Down’s syndrome lead to thousands of abortions every year. A new proposal will make it even harder for parents to resist social pressure If it were made possible, do you think Down’s syndrome should disappear from society?” Put in this stark form, the......
Today UK Prime Minister, David Cameron, was questioned during Prime Minister’s Questions on the screening out of people with Down’s syndrome. Nigel Evans, the MP for Ribble Valley, asked a question about the proposed implementation cf DNA pre-natal testing into the current Fetal Anomaly Screening......
It is not only junior doctors who are trying to get their voices heard by Jeremy Hunt. One young lady last week made an impassioned plea directly to the health minister, on an issue that is arguably more about life and death than is the......
Don’t Screen Us Out. That’s the message from a young women with Down’s syndrome whose passionate speech outside Parliament has gone viral… The BBC feature is available below. To view the original broadcast visit: http://www.bbc.co.uk/iplayer/episode/b0788v6h/midlands-today-26042016...
A video of 20-year old Heidi Crowter’s speech at this week’s Don’t Screen Us Out demonstration outside Parliament has gone viral online, clocking up over 150,000 organic views on Facebook since it was released on Tuesday. Heidi, who works in a Hair Salon in Coventry,......
The family of a Morley tot has joined forces with a campaign group protesting against a discriminatory new pre-natal screening proposal. Connie-Rose Seabourne was born two months premature and it wasn’t until she was two weeks old that parents Julie and Peter, of Daisy Hill......
Share the campaign on Facebook.
ACTION ALERT: Email your MP before it's too late.It's now down to Secretary of State for Health, Jeremy Hunt, to...
Posted by Don’t Screen Us Out on Monday, 8 February 2016
Lend us your profile pic.
Share the campaign on Twitter.
Have you contacted your MP yet? Do it now. https://t.co/l3HPgb7qcJ. #DontScreenUsOut #NIPT pic.twitter.com/J0KjHkrGhj
— Don't Screen Us Out (@dontscreenusout) February 8, 2016
The Don’t Screen Us Out campaign is a grass-roots initiative supported by a collection of people with Down’s syndrome, families and Down Syndrome advocate groups lead by Saving Downs Syndrome.
We have come together to highlight the serious concerns around the introduction of second-line cfDNA screening in the UK.
For media enquiries or to contact us please click here.
© Don’t Screen Us Out 2017
