High Court to hear landmark case against discriminatory abortion law

The High Court in London will hear a landmark case against the UK Government over the country’s discriminatory abortion legislation, which singles out babies with disabilities by allowing terminations right through to birth for conditions including Down’s syndrome, cleft lip and club foot.

Currently in England, Scotland and Wales, there is a 24-week time limit for most abortions that are carried out when a baby does not have a disability. However, if the baby has a disability, abortion is legal right up to birth.

Heidi Carter, a 25-year-old woman with Down’s syndrome, and Máire Lea-Wilson, whose sixteen-month-old son Aidan also has the condition, both believe this is “deeply offensive” and have joined forces to challenge the law.

‘Downright discrimination’

Heidi Carter, who recently got married in one of the first post-lockdown weddings, said:

“At the moment in the UK, babies can be aborted right up to birth if they are considered to be ‘seriously handicapped’. They include me in that definition of being seriously handicapped – just because I have an extra chromosome! Can you believe that?

“What it says to me is that my life just isn’t as valuable as others, and I don’t think that’s right. I think it’s downright discrimination!”

She added: “I am going to take the Government to court with other members of the Down’s syndrome community to make sure that people aren’t treated differently because of their disabilities.”

Equal worth?

Máire, an accountant, equality rights campaigner and mother said: “Our case is not about the rights and wrongs of abortion. It’s about the specific instance of inequality in the law, whereby for a child without a disability the legal limit for abortion is 24 weeks, but you can have an abortion right up to full term with a child that does have a disability.

“I have two sons, and I love and value them equally; however, the law does not value them equally. That feels so wrong to me, and so we want to try and change that.

“I was 34 weeks pregnant when we discovered it was likely that Aidan would have Down’s syndrome.

“The first thing they wanted to discuss at the hospital was whether we would like to terminate the pregnancy. It felt like the assumption was that we would abort our baby. At such a late stage of pregnancy, and at a time when I was scared and vulnerable, that was a very difficult question to get asked. I find it very hard to think back on that time.

“I find it difficult to think that Aidan’s life isn’t seen as valuable as his older brother’s. It makes me worry as to whether he will be seen the same or treated the same.  I also really worry that when he is older, if this law is still in place, how will that make him feel: that he’s not as valuable? That he doesn’t have equal worth?

“Aidan is a little ray of sunshine. He’s had some challenges and done so well so we’re just really proud of him. I would not change him for the world.”

Speaking to Sky News yesterday, the 32-year-old added: “I want my children to grow up knowing that we truly are all equally valued, regardless of ability status.

“My reason for bringing this joint legal action to try and change the law is simple; as a mother, I will do everything in my power to make sure my child is treated fairly and equally. My reason is Aidan.”

Widespread support

Heidi and Máire’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 6,000,000 people have watched Heidi tell Channel 5 the current law is “deeply offensive” and still more have watched her telling the BBC’s Victoria Derbyshire programme that the current law makes her feel “unloved and unwanted”.

The campaign has been shared tens of thousands of times on social media, with people adding #ImWithAidan and #ImWithHeidi to their posts.

The support for Aidan, Heidi and Máire is in line with polling on the issue, which shows that the majority of people in England, Wales and Scotland feel that disability should not be grounds for abortion at all. Just one in three people think it is acceptable to ban abortion for gender or race but allow it for disability.

Scale of Down’s syndrome abortions

There were 3,183 disability selective abortions across England & Wales in 2019, with 656 of those occurring following a prenatal diagnosis of Down’s syndrome. 

However, the figures are likely to be much higher.

In a 2013 review on disability-selective abortions, it was revealed 886 babies were aborted for Down’s syndrome in England and Wales in 2010, but only 482 of these were reported in official Department of Health records.

The underreporting was confirmed in 2014 in a Department of Health review.

There has also been an increase in the number of abortions of babies prenatally diagnosed with Down’s syndrome since the introduction of new prenatal screening tests.

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.

‘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.

‘Barbaric’

Sally Phillips, actress, comedian, and mother to Ollie who has Down’s syndrome previously told the Times: “Given advances in medical care and quality of life for people with Down’s syndrome, the different right to life is beginning to look not just dated but barbaric.”

‘Inequality, sanctioned, sponsored and funded by the state’

Lynn Murray, spokesperson for Don’t Screen Us Out, said:

“By stating that disability is grounds for termination, section 1(1)(d) of the Abortion Act, promotes inequality. It would be totally condemned if a country’s abortion laws singled out babies on the ground of gender or skin colour, but because it’s a disability such as Down’s syndrome, that’s somehow ok? This is inequality, sanctioned, sponsored and funded by the state.

“This provision in the Abortion Act is a hangover from a time when we had totally different attitudes to the inclusion and contribution of people with disabilities. You only have to look at the discriminatory language used by all sides of the debate in Parliament when this was discussed in 1967 and 1990 to realise how far attitudes have changed. Society has moved on but the law hasn’t. It’s time it did.”

“We live in a society which proclaims that we want to empower those with disabilities, and that regardless of your background, you deserve a fair and equal chance at life. We believe that our laws must reflect this narrative.”

Justice

Heidi and her legal team have set up a CrowdJustice crowdfunding page to help raise funds for legal proceedings, pay for legal advice and prepare for the case. To find out more and to make a contribution to the case visit: www.crowdjustice.com/case/downrightdiscrimination/

MP criticises UK Government for imposing discriminatory disability abortion on Northern Ireland

DUP MP Carla Lockhart has criticised the UK Government for imposing discriminatory abortion legislation on Northern Ireland, which allows babies prenatally diagnosed with Down’s syndrome to be aborted right up to birth.

Addressing the Minister for Northern Ireland, Robin Walker MP, in the House of Commons yesterday, the pro-life MP said the Government’s actions allow “disability discrimination within the womb that would otherwise be illegal outside of the womb.”

Her comments come ahead of October’s Down’s syndrome awareness month – a month Carla says we should use to “celebrate Down’s syndrome, raise awareness and promote inclusivity within our society”.

How Northern Ireland’s discriminatory abortion law came about

Last year, in the absence of a functioning Northern Ireland Assembly, politicians in Westminster voted to impose a new abortion regime on the province, despite all of the Northern Ireland MPs who were present voting against the proposals.

Despite the global coronavirus crisis and the Northern Ireland Assembly returning on 11 January 2020, the Conservative Government announced that they would proceed with imposing an extreme abortion regime on Northern Ireland on 31 March 2020.

The Conservative Government chose to take what Parliament asked them to impose on Northern Ireland and made it far worse. This has resulted in Northern Ireland having one of the most extreme abortion regimes in the world.

Under the new regulations, abortion is allowed up to the point of birth for all disabilities, including cleft lip, club foot and Down’s syndrome, whereas if the baby does not have a condition, there is a 24-week time limit.

The regulations also introduce de-facto abortion on demand through to 24-weeks and allow sex-selective abortion through 12-weeks.

In June, in each House’s final vote on the issue, both the House of Commons and House of Lords voted in favour of motions approving the Government’s decision to impose an extreme abortion regime on Northern Ireland.

This was despite a reconvened Northern Ireland Assembly passing a motion opposing the regulations. Additionally, across the two votes held, 75 of Northern Ireland’s 90 MLAs voted against the provisions in the regulations allowing discriminatory disability abortion up to birth.

‘Downright discrimination in the womb’

Carla has long been an outspoken critic of the UK Government’s decision to impose abortion on Northern Ireland, and is a supporter of Heidi Carter, the 25-year-old with Down’s syndrome who has launched a landmark legal challenge against the UK’s discriminatory abortion law.

Ahead of the vote in June, Carla and Heidi delivered a petition to the Prime Minister urging him not to push abortion on Northern Ireland against the will of its people.

Speaking just outside the gates of 10 Downing Street, in June, Heidi said: “I’m asking MPs to allow equality in the womb for every baby.

“I want this to happen because I’m someone who has Down’s Syndrome and I feel that the law makes me upset, it makes me feel like I’m better off dead.

“I think it sends a really negative message.”

She added: “I think the law which allows abortion up to birth for non-fatal disabilities such as mine is downright discrimination in the womb.”

‘Both lives matter’

Carla Lockhart MP who launched the petition with Baroness O’Loan said:

“Along with over 18,000 people from Northern Ireland who signed the petition, we want to send a clear message to the Government that the people of Northern Ireland do not want Westminster imposing these extreme abortion laws on them.

“Instead, we join with Heidi Crowter in saying ‘no’ to discriminatory disability-selective abortion.

“We join Heidi in saying both lives matter.

New prenatal testing linked to 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.

Despite the possibility that prenatal testing is leading to discriminatory disability abortions, the UK Government announced last month that it will be proceeding with the procurement and rollout of a nationwide prenatal testing scheme for Down’s syndrome.

Scotland’s devolved health service announced this week they would also be rolling out the test.

Parents under pressure to terminate pregnancies

Last year, it was discovered 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 four-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.

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.