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.

Nicola Sturgeon announces expanded abortion access a priority for the Scottish Government

Scotland’s First Minister, Nicola Sturgeon, has announced that the Scottish Government will expand access to abortion in Scotland, despite last year’s figures being the second highest on record.

Speaking in Holyrood on Tuesday 1 September, Sturgeon outlined her party’s intention to expand access to abortion over the next 12 months.

The pledge is also included in the Government’s Programme for 2020-2021, which sets out the actions they will take in the coming year as a “priority action”.

Second-highest abortion figures on record

The SNP Government plan to expand access to abortion comes just one week after the release of official statistics revealed that the number of abortions carried out in Scotland last year reached the second highest number on record.

Official figures from Public Health Scotland show that 13,583 terminations carried out in 2019 – the highest total since 2008 and an increase of 297 from 2018 when there were 13,286 abortions.

SNP MP faces difficulty for pro-life values

One SNP MP, Dr Lisa Cameron, has faced difficulty for holding pro-life values whilst being in the party.  

Ahead of last year’s general election, Dr Cameron revealed fears that her opposition to imposing an extreme abortion regime on Northern Ireland resulted in her being the last party member approved to stand for re-election.

In July 2019, the former doctor voted against an amendment which would force abortion on Northern Ireland.

While the matter was a free vote for individuals to decide in line with their own conscience, Nicola Sturgeon made it clear that she supported abortion.

Dr Camron revealed at the time her office had received more than 900 messages of “abuse” and “cyberbullying” for voting against the amendment.

Since then, Dr Cameron has continued to face a campaign of abuse from abortion activists and recently received a death threat against an elderly relative following her vote against a Bill that would deny women practical and emotional support outside abortion clinics.

Scotland abortion numbers second highest ever on record

Abortion statistics released by Public Health Scotland reveal that the number of abortions carried out in Scotland reached the second highest number on record last year. 

Official figures showed there were 13,583 terminations carried out in 2019 – the highest total since 2008 and an increase of 297 from 2018 when there were 13,286 abortions.

Almost half of medical terminations in 2019 involved self-administration of misoprostol in the home setting. This is the second stage of treatment for early medical terminations; the first drug (mifepristone) has been taken at the clinic. The figure rose from 29.9% in 2018 to 49.3% last year, and is likely to increase further when 2020 statistics are published due to a change in guidance allowing the self-administration of both mifepristone and misoprostol in response to the coronavirus pandemic. 

The repeat abortion rate for 2019 was 4.4 per 1,000 women ages 15-44, up from a rate of 3.5 per women aged 15-44 in 2010. In total, 34% of abortions in 2019 were repeat abortions.

The statistics also reveal 581 terminations for women over the age of 40 – the highest number in this age group since abortion became legal in 1967.

Last year, there was a rise in the number of young women having abortions, with 1834 abortions in those under 20, up from 1829 in 2018.

While the teenage pregnancy rate has fallen from 34 per 1000 women in 2014 to 30 per 1000 women in 2018, the proportion of teenage pregnancies that ended in termination between 1994 and 2018 increased from around a third (33.1%) to just under half (46.5%).

A spokesperson for Right To Life UK, Catherine Robinson said:

“Sadly, the number of abortions taking place in Scotland has reached the second highest number on record. Every one of these 13,583 abortions is a tragic loss of life. 

“Even worse, that number could climb even higher.

“A change of guidelines in 2018, which allows women to take the second set of abortion pills involved in a medical abortion out of clinical settings accounted for nearly 50% of medical abortions in 2019. This is up from nearly 30% in 2018, but is likely to further increase next year when 2020 statistics are published due to a change in guidance allowing ‘DIY’ home abortions in response to the coronavirus pandemic.

“Additionally, abortion activists continue to push for the removal of all safeguards in abortion law and want to see abortion available on demand, right up to the point of birth.

“Polling shows large majorities of women in the UK support changes to our abortion laws that would have a positive impact on lowering the number of abortions. 70% of women want the current time limit on abortion to be lowered and 91% of women want a ban on sex-selective abortion.

“We are calling on the Scottish Government to urgently bring forward sensible new restrictions and increased support for women with unplanned pregnancies. This would ensure we were working together as a society to reduce the tragic number of abortions that happen each year.”

Action alert – Ask your MSPs/AMs to revoke dangerous Scotland and Wales ‘DIY’ abortion decisions

The Scottish and Welsh Governments have unfortunately followed the UK Government and introduced ‘DIY’ abortions to Scotland and Wales.

The very substantial change has been announced without any public consultation, parliamentary scrutiny or debate.  

Thank you to everyone that has written to their MPs asking them to revoke the decision made by the Conservative Government for England.

We now need to ensure that it is also clear to both the Scottish and Welsh Governments that the public in Scotland and Wales are upset about the decision each Government has made and that it should be revoked in Scotland and Wales as soon as possible. 

It is vital that there is pressure in all three Governments on this issue.

If you are a Scottish or Welsh resident, please click the button below to email your MSPs/AMs asking them to urgently raise this with the Scottish/Welsh Government. It only takes 30 seconds.

Once you have emailed your MSPs/AMs, please do let friends and family know to email their MSPs/AMs.

Thank you for your help on this.