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. Take action now and ask your MP to sign the Early Day Motion calling for delay to the implementation before it’s too late.

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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

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......

BBC Thought of the Day – John Bell – Down’s Syndrome

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......

Campaigners applaud Cameron’s caution on screening for Down’s syndrome

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......

Worse than eugenics

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......

‘Dear Mr Hunt, listen to the real experts…’

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......

PRESS RELEASE – SUCCESS OF DON’T SCREEN US OUT PARLIAMENT DEMONSTRATION

Successful Don’t Screen Us Out demonstration highlights discriminatory consequences of new prenatal screening, and underscores need for Down’s syndrome voices to be heard Individuals with Down’s syndrome and their families led a rally outside Parliament today, affirming the dignity and happiness that people with disabilities......

PRESS RELEASE – DON’T SCREEN US OUT PARLIAMENT DEMONSTRATION TODAY

OPERATIONAL NOTE – PHOTO OPPORTUNITY: Mon 18 April 10:30 – 12:30 (speeches at 12:00) Houses of Parliament, Statue of George V, Abingdon Street, London, SW1P 3JY Today individuals with Down’s syndrome and their families are protesting outside Parliament regarding “discriminatory” pre-natal screening proposals asking Jeremy......

BBC Radio: Down’s syndrome test

BBC Radio interviews a mother from Wallingford along with Don’t Screen Us Out spokeswomen Lynn Murray on cfDNA screening and the Don’t Screen Us Out campaign.  ...

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...

Posted by Don’t Screen Us Out on Monday, 8 February 2016

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Who are we?

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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 proposed introduction of second-line cfDNA screening in the UK and are calling on the government to halt the introduction of the proposal.

 

For media enquiries or to contact us please click here.

© Don’t Screen Us Out 2016