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.
PRESS RELEASE FOR IMMEDIATE RELEASE Forty-three disability groups call on Amazon to take action over discriminatory t-shirts Forty-three Down’s syndrome and learning-disability groups, including the Down’s syndrome Association and Mencap, have this weekend published an open letter calling on Amazon to take steps to halt,......
Press release for immediate release Govt announce roll-out of new Down’s syndrome test that will likely see rise in abortions The number of babies with Down’s Syndrome aborted is likely to increase following a decision announced by the Government. People with Down’s syndrome, their families......
The most recent abortion statistics released by the Department of Health and Social Care today show 656 abortions where a baby had Down’s syndrome in 2019. Under the current law, abortion is allowed up to birth if a baby has a disability including Down’s syndrome.......
The is information about the disability legal case of Heidi Crowter and Máire Lea-Wilson. Simply click on the image below to download the facts:...
Heidi Crowter, a 24-year-old woman from Coventry who has Down’s syndrome, has joined forces with Máire Lea-Wilson from Brentford, West London, whose eleven month-old son Aidan has Down’s syndrome, and have launched a landmark case against the UK Government over the current discriminatory abortion law......
2000 people with Down’s syndrome and their families have signed a letter to Boris Johnson urging him to clarify that disability-selective abortion for Down’s syndrome will not be introduced to Northern Ireland. Don’t Screen Us Out have also now written to the Prime Minister seeking......
Heidi Crowter, a 24-year-old woman from Coventry who has Down’s syndrome, has joined forces with Cheryl Bilsborrow from Preston, whose two year-old son Hector has Down’s syndrome, and have launched a landmark case against the UK Government over the current discriminatory abortion law which allows......
CONCERNED? PLEASE SIGN THE OPEN LETTER TO NEW ZEALAND PRIME MINISTER JACINDA ARDERN HERE PRESS RELEASE FOR IMMEDIATE RELEASE NZ abortion committee ignores Down syndrome community concerns about lifting time limit on abortions for babies with disabilities from 20-weeks up to birth, and breaking Jacinda......
The Advertising Standards Authority ruled in January 2020 that ads from some providers of the latest Down’s syndrome screening test, the Non-Invasive Prenatal Test (NIPT), were “misleading because they were likely to exaggerate to consumers the accuracy with which the test could detect whether the......
Press release for immediate release Down’s syndrome community oppose RCOG calls for framework that will introduce Down’s syndrome abortion to Northern Ireland Down’s syndrome advocates have spoken out against the Royal College of Obstetricians and Gynaecologists (RCOG) calls for the Government to introduce abortion on......
Down’s syndrome advocates are calling on a halt to the roll-out of new ‘Non-Invasive prenatal tests’ (NIPT) on the NHS after a series of Freedom of Information requests have revealed that the number of babies born with Down’s syndrome has dropped by 30% in NHS......
Disability advocacy group Don’t Screen Us Out are calling on the Government to urgently clarify that abortion for Down’s syndrome will not be introduced to Northern Ireland. The Government have released a consultation on proposed abortion regulations for Northern Ireland. The consultation document outlines that......
A new report calls for cultural changes to end systemic discrimination towards parents expecting a baby with Down’s syndrome Positive about Down syndrome (PADS) has today shared a report with MPs highlighting the ongoing systemic discrimination towards expectant parents of a baby with Down’s syndrome.......
Press release for immediate release Sinn Féin and DUP: Don’t bring disability-selective abortion to Northern Ireland say 500 people with Down’s syndrome and their families People with Down’s syndrome and their families have signed an open letter to Sinn Féin and DUP leaders demanding that......
Are you interested in sharing an uplifting, emotive and positive message about Down’s syndrome with others? We’re delighted to present the new leaflet from the Wouldn’t Change A Thing team. This leaflet has been produced as a result of a collaboration with Don’t Screen Us......
People with Down’s syndrome and their families have signed an open letter to Theresa May opposing the Government’s plans to draft secondary legislation that would introduce abortion for Down’s syndrome to Northern Ireland. This major law change would introduce abortion for babies with Down’s syndrome......
The Don’t Screen Us Out campaign, a coalition of Down’s syndrome advocacy groups, have praised a speech made by Lord Shinkwin in the House of Lords last night against the Government’s plans to draft secondary legislation that would introduce abortion for Down’s syndrome to Northern......
The most recent abortion statistics released by the Department of Health today show a 42% increase in abortions for Down’s syndrome since 2008. The statistics show that there were 618 abortions for Down’s syndrome in 2018. This now brings it to a 42% increase in......
People with Down’s syndrome, their families and advocacy groups are concerned that the Scottish abortion statistics released by NHS Scotland’s ISD today show a 48% increase in abortions for Down’s syndrome since 2010. The statistics show that there were 34 abortions for Down’s syndrome in......
As a society, we’re sensitive about the language we use about minority groups. So, this new poster, designed by Speech and Language Therapist Colette Lloyd, may be helpful for professionals who want to be sure that they’re getting it right when they’re talking about Down’s......
Press release for immediate release 1800 people with Down’s syndrome and families call on Boris Johnson to not introduce abortions up to birth for Down’s syndrome, as new figures show 710 late-term abortion for Down’s syndrome in England and Wales over the last 10 years......
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......
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.
We have come together to highlight the serious concerns around the introduction of second-line cfDNA screening.
For media enquiries or to contact us please click here.
© Don’t Screen Us Out 2017
