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Don’t screen us out

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.

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Our concerns

Harm to babies with Down’s syndrome & the Down’s syndrome community

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.

The proposal violates the Convention on the Rights of Persons with Disabilities (CRPD)

Introducing NIPT under current conditions would enable eugenic discrimination

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.

Medical reform is needed to support parents who have a diagnosis or probable expectation of Down’s Syndrome

Media

Press 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 Ardern’s promise to the disability community

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......

16 February, 2020 / No comment
Press release – 1800 people with Down’s syndrome and families call on Boris Johnson to not introduce abortion up to birth for Down’s syndrome, as new figures show 710 late-term abortions for Down syndrome in England and Wales over the last 10 years

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......

12 February, 2020 / 5 Comments
Non-Invasive Prenatal Test (NIPT) Fact Checking

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......

07 February, 2020 / No comment
Press release – Down’s syndrome community oppose RCOG calls for framework that will introduce Down’s syndrome abortion to Northern Ireland

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......

06 February, 2020 / No comment
Talking about Down’s syndrome? Here’s a helpful resource

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......

19 May, 2019 / No comment
GOVERNMENT CONFUSION OVER NIPT TESTING HAS MAJOR IMPLICATIONS

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......

24 May, 2018 / No comment
PRESS RELEASE: DOWN’S SYNDROME ADVOCATES PRAISE INCLUSION OF DISABILITY SUPPORT IN NEW TYNWALD ABORTION BILL, BUT ARE ALARMED AT INTRODUCTION OF ABORTION UP TO BIRTH FOR CONGENITAL CONDITIONS

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......

30 January, 2018 / No comment
PRESS RELEASE: Down’s syndrome advocacy group fear introduction of abortion up to birth for disabilities on Isle of Man could lead to more children with Down’s syndrome being screened out by termination

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......

23 August, 2017 / No comment
Energy FM: Down’s syndrome group wants testing rethink

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.......

25 November, 2016 / No comment
PRESS 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

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......

29 October, 2016 / No comment
Petition signed by over 900 people with Down’s syndrome and their families opposing “discriminatory” prenatal screening proposal delivered to 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......

13 October, 2016 / No comment
Parliament Event: A World Without Down’s Syndrome?

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......

07 October, 2016 / No comment
LBC – Should we screen out people with Down’s syndrome?

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......

12 August, 2016 / No comment
Don’t Screen Us Out launch open letter to Jeremy Hunt

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......

14 July, 2016 / No comment

Videos

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ACTION ALERT: Email your MP before it's too late.It's now down to Secretary of State for Health, Jeremy Hunt, to...

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Who are we?

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.

 

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© Don’t Screen Us Out 2017