Down’s syndrome abortions likely to increase after Scottish Govt announce roll-out of new scheme

The number of babies with Down’s syndrome aborted in Scotland is likely to increase following a decision announced by Public Health Scotland to roll-out a nationwide testing scheme for the condition across all NHS hospitals.

Individuals with Down’s syndrome, their friends and families are now deeply concerned that the introduction of Non-Invasive Prenatal Testing (NIPT) will result in more babies with the condition being “screened out” across Scotland.

Their concerns are well-founded, as an investigation by the Sunday Times earlier this year revealed that the number of babies born with Down’s syndrome has dropped by 30% in NHS hospitals that have already introduced NIPT.

The Department of Health has previously admitted that no assessment was made of the impact that the roll-out of the new tests will have on the lives of people with Down’s syndrome. 

Likewise, Public Health Scotland’s roll-out of NIPT was introduced yesterday without any assessment of the negative consequences it could bring about.

In addition, a Freedom Of Information request revealed there was no opportunity to scrutinise the wide-implementation of NIPT in Scotland as the roll-out went ahead before plans were published by the Scottish Government.

Don’t Screen Us Out, a coalition of disability campaign groups and individuals, are now urgently calling on the Scottish Government to assess the impact that the introduction of the test will have on people in Scotland living with Down’s syndrome.

They also want guidelines to be published on antenatal care for women found to be carrying a baby with Down’s syndrome.

Campaigners warn that, without reforms, NIPT will likely “worsen the culture of informally eugenic anti-disabled discrimination that exists in fetal anomaly screening programmes”.

A history of NIPT in Scotland

Professor Alan Cameron, a member of the UK NSC, introduced the Harmony prenatal blood test (an NIPT) into private practise in Scotland in 2013. The NIPT test was piloted in Tayside in 2014 as part of the UK NIPT RAPID review.

The 2015 UN report from the International Bioethics Committee (IBC) of the United Nations Educational, Social, and Cultural Organisation (UNESCO) issued a stern warning about the drive to adopt NIPT in national screening programmes stating, “the 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”.

Subsequently, the Nuffield Council of Bioethics published a 149-page report covering many issues surrounding the use of NIPT in 2017. They also warned: “The UK National Screening Committee should take better consideration of the particular consequences, some of which will be unintended, of prenatal screening programmes where termination of pregnancy is an option.”

In the same year, a report published by Down’s syndrome Scotland revealed “very poor attitudes’ and ‘appalling behaviours’ from professionals after Down’s syndrome was identified prenatally.”

Research commissioned in 2019 by Public Health Scotland, who administer the UK NSC screening programmes, ahead of the rollout of NIPT found that two thirds of those interviewed had no depth of knowledge about Down’s syndrome: “So, even whilst Down’s syndrome was recognised by virtually all respondents, most admitted that their specific knowledge of Down’s syndrome was limited.”

‘Unique value’

Lynn Murray, spokesperson for the Don’t Screen Us Out campaign said: “As a mother of a daughter who has Down’s syndrome, I see every day the unique value she brings to our family and the positive impact she has on others around her. That lived experience isn’t a fundamental of the screening programme.

“Disability campaigners have repeatedly called on the Scottish Government and Public Health Scotland to carry out an impact assessment of the proposed rollout. Sadly these calls have been ignored.

“Figures released last year realised the fears of the Down’s syndrome community that rolling out these tests would lead to a large drop in the number of babies with Down’s syndrome were not unfounded.

“While we are pleased to see that there have been improvements in the guidance outlining how a diagnosis of Down’s syndrome is communicated to parents, no assessment of the impact of new screening has been carried out by the Scottish Government, so we expect to see a similar increase in abortions for Down’s syndrome when the test is rolled out here in Scotland. Such outcomes are likely to have a profoundly negative impact on the Down’s syndrome community.

“Public Health Scotland’s own research commissioned in 2019 found that two thirds of those interviewed had no depth of knowledge about Down’s syndrome. That should have set alarm bells ringing.

“We are calling on Public Health Scotland and the Scottish Government to undertake an urgent inquiry into the obvious concerns and the impact that these tests are having on birth numbers of babies with Down’s syndrome.

“There is mounting evidence that an unconscious bias exists in the Fetal Anomaly Screening Programme. We need the right reforms to turn things around and ensure that the tenets of diversity and inclusivity that we hold dear in Scotland extend to these screening programmes.”

‘Screening out’ babies with Down’s syndrome seen as ‘cash cow’

Earlier this year a spokesperson for a Chinese biotech firm declared “screening out” babies with Down’s syndrome is a “cash cow” funding the growth of the whole business.

The admission came from a spokesperson for BGI Group – a Chinese genetics conglomerate whose main business is offering non-invasive prenatal tests, primarily used to diagnose Down’s syndrome. 

In a segment from an Aljazeera documentary titled Genesis 2.0, the spokesperson gestures towards a digital map of the world and says: “You can see clearly, especially for Down’s syndrome, we have nearly two million samples all over the world. This part is, what we call, BGI’s cash cow, making money to support the growth of the whole group.”

Dismissing a query over potential ethical concerns, she coldly adds: “…with the use of our technology, we could avoid the birth of birth defect, like a Down’s syndrome birth, a Down’s syndrome child, we can screen them out, we can avoid the birth of them.”

Parents under pressure to terminate pregnancies

A recent report revealed that pregnant mothers who refuse to abort their children with Down’s syndrome are being pressured by some medical professionals to change their decision.

One mother, whose child is now three-years-old, said medical professionals told her they could leave her baby with Down’s syndrome to die if it was struggling after birth.

Another mum told how even at 38 weeks pregnant she was being offered an abortion.

Currently, abortion for disabilities including Down’s syndrome, cleft lip and club foot is legal right through to birth in England, Wales and Scotland, and 90% of babies with Down’s syndrome identified in the womb are aborted.

Woman with Down’s syndrome criticises Amazon over offensive clothing

Heidi Carter, who has Down’s syndrome and is challenging the UK’s discriminatory abortion law, has spoken out against that clothes sold on Amazon with hateful slogans against the condition are offensive make her feel upset.

It comes after the online giant was caught listing and selling t-shirts that say “Let’s make Down’s syndrome extinct!”, for the second time this in one year.

Speaking to Victoria Derbyshire on the BBC, Heidi revealed how upsetting it was for her when she first saw the offensive clothing.

The recently married 25-year-old said: “I don’t like people saying mean things about me… Also the reason why it’s very offensive is because it hurts my husband as well. I love my husband, so much!”

‘Hate speech’

Heidi’s mother Liz Crowter, who was also interviewed by the BBC said that Down’s syndrome is just one extra chromosome and not something that needs to be eradicated.

She said the t-shirts were “hate speech against people with Down’s syndrome.

Giving an example of one of the t-shirts Liz said: “There’s another one where it’s a take on an Amazon review site where it says: ‘Down’s syndrome, very bad’ and then five stars. Obviously, only the one star is coloured in. So, they’re saying people with Down’s syndrome are only one star, which, obviously, again is hate speech and deeply upsetting and offensive.”

The Coventry-based mother said she was fed up with Amazon for allowing the offensive clothing back on the website and criticised them for not protecting disability in its policy on hate speech while protecting most other characteristics.

40,000 sign petition against ‘hatewear’

Over 40,000 people have now signed a petition calling on Amazon to do more to help the Down’s syndrome community fight against hate crime.

Actress Sally Phillips, whose oldest child, Olly, has the condition, is among the signatories of the Change.org petition.

She criticised Amazon for selling Down’s syndrome “hatewear” t-shirts, telling The Times: “Eugenic ideas are really taking hold — the idea that there is this subclass of humans and it is better we get rid of them. If you have a world view in which you regard academic intelligence or money-making possibilities as the ultimate goal… then you feel perfectly justified in saying these things.”

She added: “It would break my heart if Olly saw anyone wearing those T-shirts.”

Heidi’s landmark case

Earlier this year, Heidi launched a landmark case against the UK Government over current abortion legislation that singles out babies with disabilities, allowing abortion right through to birth for conditions including Down’s syndrome, cleft lip and club foot.

Heidi’s legal challenge has generated widespread support from those with first-hand experience of Down’s syndrome, pro-life campaigners, disability advocates and more.

Over 5,000,000 people have watched Heidi tell Channel 5 the current law is “deeply offensive” and many more have seen her tell the BBC’s Victoria Derbyshire programme that the current law makes her feel “unloved and unwanted”.

#ImWithHeidi

Heidi’s campaign has been shared tens of thousands of times on social media, with people adding #ImWithHeidi to their posts.

She has now been joined in her legal fight against discriminatory disability-selective abortion by Máire Lea-Wilson, whose one-year-old son, Aidan, has Down’s syndrome.

Máire said she was encouraged in hospital to abort Aidan when a scan at 34-weeks revealed he had the condition.

Recalling her experience, she told Sky News: “I felt like the assumption was that we would abort our baby.”

The mother of two added: “I have two sons and I love and value them equally and I think it seems really wrong that the law doesn’t value them equally.”

New prenatal testing has resulted in increased abortion numbers

The introduction of new prenatal screening tests has been linked to an increase in the number of  Down’s syndrome babies aborted in the UK and around the world.

Figures published last year show that the number of babies born with Down’s syndrome in the UK has dropped by 30% in NHS hospitals that have introduced the new non-invasive prenatal tests.

The figures prompted Down’s syndrome advocates to ask the Government to halt the roll-out of the new tests and undertake an inquiry into the impact that the tests are having on the birth numbers of babies with Down’s syndrome.

However, their pleas appear to have fallen on deaf ears, as the Government recently announced that it will be proceeding with the procurement and rollout of a nationwide prenatal testing scheme for Down’s syndrome – something which will likely lead to an increase of babies with the condition being aborted.

Additionally, The Department of Health has previously admitted that no assessment was made of the impact that the roll-out of the new tests will have on the lives of people with the condition.

Actress Sally Philips criticises Amazon for Down’s syndrome extinction t-shirts

Amazon has been condemned by people with Down’s syndrome and their families for selling t-shirts which incite hate speech against the condition.

T-shirts bearing hateful slogans, such as “Let’s make Down syndrome extinct!” and “F*ck Down syndrome”, have been discovered for sale on the online giant’s website for the second time this year.

The t-shirts first appeared on Amazon in March this year, but were removed by the retailer after it received a tsunami of complaints.

‘Hatewear’

Over 19,000 people have now signed a petition calling on Amazon to do more to help the Down’s syndrome community fight against hate crime.

Actress Sally Phillips, whose oldest child, Olly, has the condition, is among the signatories of the Change.org petition.

She criticised Amazon for selling Down’s syndrome “hatewear” t-shirts, telling The Times: “Eugenic ideas are really taking hold — the idea that there is this subclass of humans and it is better we get rid of them. If you have a world view in which you regard academic intelligence or money-making possibilities as the ultimate goal… then you feel perfectly justified in saying these things.”

She added: “It would break my heart if Olly saw anyone wearing those T-shirts.”

‘Outdated stereotypes’

Cristina Bowman, who set up the petition, feared seeing such hateful slogans would have a similar effect on her three-year-old son, Max, who has the condition.

She said: “We’re fighting hard to get positive balanced information out there because so many children are aborted when their parents find out they have Down’s syndrome.

“Max does not have any serious health problems, he’s the loveliest boy. But we were so scared before he was born because we believed outdated stereotypes.”

‘Offensive’

Mother Caroline White, whose son Seb is a model with Down’s syndrome, shared a series of screenshots of the T-shirts on Twitter, writing: “Look at this offensive s*** I, and other parents of kids with Down’s syndrome, have to see. @amazon @AmazonHelp how the hell have these been listed??”

Hate crimes against the disabled up

Research by United Response, the learning disability charity, found there were more than 6,000 reported cases of hate crimes against disabled people in 2018-19, a rise of almost 12 per cent in a year.

New prenatal testing has resulted in increased abortion

The introduction of new prenatal screening tests has been linked to an increase in the number of Down’s syndrome babies aborted in the UK and around the world.

Figures published last year show that the number of babies born with Down’s syndrome in the UK has dropped by 30% in NHS hospitals that have introduced the new non-invasive prenatal tests.

The figures, released as a result of a number of Freedom of Information requests, show that among the 26 hospitals that provided the tests, there was a change in the birth rate for babies with Down’s syndrome from 1 in 956 births in 2013 to 1 in 1,368 in 2017.

As a result, Down’s syndrome advocates called on the Government to halt the roll-out of the new tests and undertake an inquiry into the impact that the tests are having on the birth numbers of babies with Down’s syndrome.

The pleas of the Down’s syndrome community appear to have fallen on deaf ears, however, as the Department of Health has previously admitted that no assessment was made of the impact that the roll-out of the new tests will have on the lives of people with the condition.

Additionally, last month, the UK Government announced that it will be proceeding with the procurement and rollout of a nationwide prenatal testing scheme for Down’s syndrome – something which will likely lead to an increase of babies with the condition being aborted.

‘Screening out’ babies with Down’s syndrome seen as ‘cash cow’

Earlier this year a spokesperson for a Chinese biotech firm declared “screening out” babies with Down’s syndrome is a “cash cow” funding the growth of the whole business.

The admission came from a spokesperson for BGI Group – a Chinese genetics conglomerate whose main business is offering non-invasive prenatal tests, primarily used to diagnose Down’s syndrome. 

In a segment from an Aljazeera documentary titled Genesis 2.0, the spokesperson gestures towards a digital map of the world and says: “You can see clearly, especially for Down’s syndrome, we have nearly two million samples all over the world. This part is, what we call, BGI’s cash cow, making money to support the growth of the whole group.”Dismissing a query over potential ethical concerns, she coldly adds: “…with the use of our technology, we could avoid the birth of birth defect, like a Down’s syndrome birth, a Down’s syndrome child, we can screen them out, we can avoid the birth of them.”

Down’s syndrome births at an all-time low in Denmark

The number of babies born with Down’s syndrome in Denmark has reached a record low, with prenatal screening tests likely resulting in more babies with the condition being aborted.

According to the Copenhagen Post, statistics from the Danish Central Cytogenetic Registry (DCCR) show that just 18 babies with Down’s syndrome were born in the country in 2019.

The decline in births began in 2004, when the Danish National Board of Health issued new guidelines recommending all pregnant women undergo prenatal screening.

Prior to the update in guidance, over 50 babies were born with the condition every year from 2000 and 2004.

Just one year later in 2005, only 31 babies were born with the condition.

The number has continued to fall, and in 2018, the year before last year’s record low, just 22 babies were born with Down’s syndrome.

Figures from the DCCR reveal that in 2014 an average of 98% of babies diagnosed with Down’s syndrome before birth are aborted each year.

New prenatal testing has resuled in increased abortion

The use of prenatal screening tests has resulted in the abortion of Down’s syndrome babies in the UK and around the world.

Figures published last year show that the number of babies born with Down’s syndrome in the UK has dropped by 30% in NHS hospitals that have introduced new non-invasive prenatal tests.

The figures, released as a result of a number of Freedom of Information requests, show that among the 26 hospitals that provided the tests, there was a change in the birth rate for babies with Down’s syndrome from 1 in 956 births in 2013 to 1 in 1,368 in 2017.

As a result, Down’s syndrome advocates called on the Government to halt the roll-out of the new tests and undertake an inquiry into the impact that the tests are having on the birth numbers of babies with Down’s syndrome.

The pleas of the Down’s syndrome community appear to have fallen on deaf ears, however, as the Department of Health has previously admitted that no assessment was made of the impact that the roll-out of the new tests will have on the lives of people with the condition.

Additionally, last month, the UK Government announced that it will be proceeding with the procurement and rollout of a nationwide prenatal testing scheme for Down’s syndrome – something which will likely lead to an increase of babies with the condition being aborted.

‘Screening out’ babies with Down’s syndrome seen as ‘cash cow’

Earlier this year a spokesperson for a Chinese biotech firm declared “screening out” babies with Down’s syndrome is a “cash cow” funding the growth of the whole business.

The admission came from a spokesperson for BGI Group – a Chinese genetics conglomerate whose main business is offering non-invasive prenatal tests, primarily used to diagnose Down’s syndrome. 

In a segment from an Aljazeera documentary titled Genesis 2.0, the spokesperson gestures towards a digital map of the world and says: “You can see clearly, especially for Down’s syndrome, we have nearly two million samples all over the world. This part is, what we call, BGI’s cash cow, making money to support the growth of the whole group.”

Dismissing a query over potential ethical concerns, she coldly adds: “…with the use of our technology, we could avoid the birth of birth defect, like a Down’s syndrome birth, a Down’s syndrome child, we can screen them out, we can avoid the birth of them.”

Parents under pressure to terminate pregnancies

A recent report revealed that pregnant mothers who refuse to abort their children with Down’s syndrome are being pressured by some medical professionals to change their decision.

One mother, whose child is now three-years-old, said medical professionals told her they could leave her baby with Down’s syndrome to die if it was struggling after birth.

Another mum told how even at 38 weeks pregnant she was being offered an abortion.

Currently, abortion for disabilities including Down’s syndrome, cleft lip and club foot is legal right through to birth in England, Wales and Scotland, and 90% of babies with Down’s syndrome identified in the womb are aborted.

Landmark case

Earlier this year, disability rights campaigner Heidi Crowter launched a landmark case against the UK Government over current abortion legislation that singles out babies with disabilities, allowing abortion right through to birth for conditions including Down’s syndrome, cleft lip and club foot.

Heidi’s legal challenge has generated widespread support from those with first-hand experience of Down’s syndrome, pro-life campaigners, disability advocates and more.

Over 5,000,000 people have watched Heidi tell Channel 5 the current law is “deeply offensive” and many more have seen her tell the BBC’s Victoria Derbyshire programme that the current law makes her feel “unloved and unwanted”.