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.

Majority of Malawi MPs reveal intention to defeat extreme abortion Bill

An extreme abortion Bill, which would allow abortion on demand right up to the point of birth, faces a crushing defeat if it is brought forward to Malawi’s National Assembly.

A survey of 141 of Malawi’s 188 MPs, conducted by national newspaper The Nation, found that 80% of lawmakers surveyed (113) will reject The Termination of Pregnancy Bill because “it is legalising killing”.

18% of MPs (26) said they were undecided and needed to consult their local constituents before making a decision. 

Just one male and one female MP revealed they would approve the extreme Bill, which is being pushed by a coalition of international abortion organisations – including Ipas.

Chairperson of the Parliamentary Committee on Health, Matthews Ngwale, is still expected to introduce the proposed legislation during the Assembly’s current sitting which ends on 23 October.

Despite strong opposition from MPs, he claims “ignorance is fuelling rejection of the Bill”.

‘Life is sacred’

Mwanza West MP Joyce Chitsulo revealed how, far from ignorance, a decision not to abort her baby daughter – who is now a midwife – has helped form her pro-life views. 

She reportedly told The Nation: “I did not abort. I just could not and I am proud of my choice. Of the three children I have, the first is my daughter, born out of that pregnancy. Today, I find my decision even more fulfilling that she is an accomplished midwife herself.” 

She added: “So long as the Bill is to do with abortion, it is a straight ‘No’ vote from me.” 

Rumphi East legislator Kamlepo Kaluwa said he couldn’t support the Bill as it “authorises killing”.  

Susan Dossi, the MP for Chikawawa West, agrees, stating that “life is sacred”. 

Abortion for any reason, on-demand, up to birth

The Termination of Pregnancy Bill outlines that abortion would be available without a time limit on grounds that “the termination of pregnancy is necessary to prevent injury to the physical or mental health of a pregnant woman”.

While this language appears to provide abortion on only narrow grounds, in practice it will likely allow for abortion on demand to be available up to birth in Malawi through a broad interpretation of the term “health”.

Malawi’s Christian Medical and Dental Fellowship expressed ‘grave concern’ when a similarly worded bill was introduced in 2017, stating it “has led other countries to effectively practice abortion on demand”.

The group noted that 98% of the UK’s abortions take place under equally permissive language. However, unlike the UK’s 24-week limit, Malawi’s Termination of Pregnancy Bill has no time limit attached to the clause allowing abortion on mental health grounds and would effectively allow abortion, on-demand, up-to-birth. 

Abortion can be performed on children and teens

The proposed legislation does not include an age limit for abortions meaning that abortions can be performed on children and teenagers. 

No parental consent required

The proposals also include a clause which allows a health service provider to provide an abortion without their parent’s consent if they feel that “that termination of pregnancy is in the best interests of the child.”

The legislation does not mention the introduction of any specific legal safeguards to prevent third-parties from taking children for abortions. This could open up the possibility of an adult who has sexually abused a child to take them for an abortion, to help cover-up their actions.

Five-year-jail sentence for doctors who conscientiously object

The change in law would also introduce a five-year jail sentence for any health professional that conscientiously objects to being involved with providing an abortion and does not want to be complicit in the abortion process by providing a referral onto another health professional who will provide an abortion.

No requirement that a doctor must be involved with abortions prior to 12-weeks

Under the proposed law, abortions can be performed by medical assistants, midwifery technicians, registered nurses, midwives and clinical officers, without a trained doctor present, in case of a complication. 

In England and Wales, abortions can only be performed by a registered medical practitioner (doctor), and the Abortion Act requires the approval of two doctors before an abortion can be performed. 

Even with this legal restriction in place, there are still many cases of complications during abortions in the UK, resulting in babies being born alive, women’s uteruses being perforated or severe haemorrhaging that has resulted in death

Under the proposed law in Malawi, prior to 12-weeks gestation, there is no requirement that a doctor perform and no requirement for the approval of two doctors before an abortion can be performed.

Babies born alive after abortion to be left to die

In the new legislation, there is no mention of a legal requirement that babies born alive after an abortion are resuscitated or provided with medical assistance.

This is more common than many people think. In 2008, a UK report found that 66 infants were born alive after NHS terminations in one year. The majority of those 66 babies took over an hour to die. 

In Victoria, Australia, where there is a similarly extreme abortion law to that proposed in Malawi, scores of babies were left to die after being removed alive during a number of ‘botched’ terminations, according to one official review

The review reported that in 2011 there were 40 ‘terminations of pregnancy’ after 20 weeks ‘resulting in live birth’. While these figures are comparable in scale, Victoria’s population of 5.5 million is just a tenth of Britain’s.

This shows the scale of this problem in an environment where there are very few legal safeguards around abortion.

Legalised partial-birth abortions

In the proposed framework there is no mention of a legal restriction on the types of abortion methods used to abort babies.

This could allow for the use of particularly gruesome abortion methods such intact dilation and extraction abortions (also knows as partial-birth abortions) and other controversial methods of abortion.

A ‘partial-birth’ abortion involves the feticidal injection of digoxin or potassium chloride at the beginning of the procedure to allow for softening of the fetal bones before the fetus is removed in a breech position. If the baby’s skull is too large to fit through the birth canal, it is crushed to allow the skull to be removed. Decompression of the skull can be accomplished by incision and suction of the contents, or by using forceps.

How international organisations are pushing for abortion law change

International NGOs, such as Ipas, have used a legislation change model in a number of other countries where they have lobbied for a law change, which, in practice, introduces abortion on demand, for any reason. 

This model firstly involves international organisations lobbying Governments to introduce new legislation, as they are currently doing in Ghana, Kenya, Malawi, Namibia, and likely other countries across Africa. They then place themselves as key advisers on the roll-out of the new abortion service, including advising on associated standards and protocols across the country. 

In this position, as a key adviser, they have then been involved with producing comprehensive guidance for governments and healthcare providers, which outlines how they can interpret language in the new legislation to allow for abortion on demand.

For example, this model can be seen in operation in Ghana where the legislation relating to abortion includes what appears to be restrictive grounds for abortion “where the continuance of the pregnancy would involve risk to the life of the pregnant woman or injury to her physical or mental health”.

However, Ipas assisted guidance specifically instructs healthcare professionals to take a very broad interpretation of what appears to be similar restrictive wording. This has, in practice, allowed abortion to take place on-demand and for any reason 

The involvement of Ipas in writing Ghana’s abortion guidance has not been hidden or obscured. 

A foreword to the current guidance states: “This document has been put together by a team of national experts with technical assistance from Ipas and WHO, Geneva.”

In Malawi, without a time limit in the proposed legislation, a similarly broad interpretation would allow abortion for any reason, on-demand, up to birth. 

Radical abortion legislation not wanted in Malawi

While there has not been any research on the public opinion around abortion in Malawi, local campaigners revealed to Right To Life UK that the vast majority of Malawian citizens are pro-life.

This mirrors a 2020 Ipsos Synovate poll from Kenya, where there is also currently international pressure to change abortion legislation, which showed just 6% of people think abortion should be permitted.

Therefore, the extreme changes being pushed on abortion legislation in Ghana, Kenya, Malawi, Namibia, and other African countries, by international organisations are likely not to be in line with the views of individuals living in the country. 

However, it is highly probable Ipas and other abortion proponents will continue pushing for a change in law undeterred. 

President likely to oppose Bill

Pro-life campaigners in the country expect the current President, Lazarus Chakwera, to come out in opposition to the Bill.

His son, Nic, has recently written an opinion piece against the Bill stating all humans have a right to life. 

Campaigners are also calling on the Malawi Special Law Commission to condemn the Bill given how extreme the proposed legislation is. 

‘Ideological colonialism’

Pro-life campaigner, Ella Duru told Right To Life UK: “This is a brazen attempt by Western abortion organisations to impose abortion, for any reason, up to birth on Malawi.

“Women in Malawi don’t need abortion to be empowered. Instead, lawmakers should look at proposals which support women such as improved healthcare, good schools and additional skills training.

“To have these well-funded overseas organisations spending lots of money to try and force more extreme abortion laws on Malawi and other African countries, particularly when it is unwanted, is a form of ideological colonialism.

“Cash rich donors from the West continue to exploit their privilege and position to offer abortion which is contrary to the pro-life values held by a large majority of African people.

“Given that these proposals would likely deny unborn babies the right to life right up to the point of birth, these proposals must be defeated by lawmakers if they reach the National Assembly.”

‘Sad sign of the times’

Rev. Dr Zacc Kawalala Chairperson of Ethics, Peace and Justice Commission (EPJC) of Evangelical Association of Malawi told Right To Life UK: “The Bill being put forward, with the help of international abortion organisations would deny unborn babies the right to life. This is the most important right of all so the Bill must be defeated.

“It is a sad sign of the times that ‘development’ now consists of pushing abortion laws on countries that want to protect life at its most vulnerable stage.

“Women don’t need abortion to be empowered. Instead, lawmakers should look at proposals which do support and empower the people of Malawi such as improved healthcare, good schools and additional skills training.”

Assisted suicide Bill launched in Ireland

A radical Private Members’ Bill attempting to legalise assisted suicide in the Republic of Ireland has been introduced in the lower house of Ireland’s parliament.

The so-called ‘Dying with Dignity Bill’ was tabled in the Dáil Éireann by People Before Profit TD Gino Kenny on Tuesday 15 September.

Although Kenny’s party only has five members, other parties have indicated they could support the proposed law, with any vote likely to be an issue of conscience.

The ‘Dying with Dignity’ bill was first introduced by TD John Halligan in 2015 but ran out of time when the Irish government was dissolved in 2016.

Analysis by Naoise Graham, Public Affairs Officer at Right To Life UK

There is an abundance of alarming aspects to a radical Bill which lurches far beyond the demands of the assisted suicide campaigners Dignity in Dying in the United Kingdom and the supposedly exemplary legislation of Oregon, USA, which this neighbouring campaign claims to emulate.

Most notably, Gino Kenny’s Bill allows for euthanasia in cases where “it is not possible” for the patient to administer themselves lethal drugs. 

Such actions are expressly forbidden under both the Death with Dignity Act implemented in Oregon in 1997 and the similar proposals of Dignity in Dying.

A host of other provisions illustrate the extremity of the Dying with Dignity Bill even among the radical company of Oregon and Dignity in Dying.

The Oregon law defines terminal illness as expected to “within reasonable medical judgement, produce death within six months”. 

In contrast, the Bill before the Irish Parliament lacks any time limit for terminal illness, only requiring that the patient be ‘likely to die as a result of that illness or complications’ at an unspecified stage.

Whereas Oregon patients supply both written and oral requests for lethal drugs, Kenny’s Bill reduces the procedure to only a single written declaration. 

Similarly, only one witness would be needed to sign off on patient declarations under the radical Irish proposal as opposed to two witnesses under the American legislation of much longer experience. 

Unlike in Oregon, Kenny’s Bill does not stipulate that the patient be recommended to inform their next of kin of their decision.

Under the ‘Dying with Dignity’ Bill, the waiting period between a patient’s declaration to end their own life and the prescription of lethal drugs reduces from fourteen to six days in cases where death from a terminal illness is deemed likely to occur within a month. 

In contrast, the Oregon system of assisted suicide only collapses the 15-day waiting period if death from a terminal illness is likely to occur within that period.

Whereas the Death with Dignity Act in Oregon insists that any informed decision must involve consideration of “feasible alternatives, including, but not limited to, comfort care, hospice care and pain control”, Gino Kenny’s ‘Dying with Dignity’ Bill fails to detail the mandatory information for patients beyond the simple mention of “the available choices”. 

Perhaps most strikingly, the ‘Dying with Dignity’ Bill makes no reference to the possibility of psychological or psychiatric evaluation in case of potentially impaired judgement on the part of the patient. This represents a disturbing distinction with Oregon where the physicians are obliged to refer such patients for counselling.

‘Wrong in principle’

The latest proposal to allow assisted suicide has been criticised by palliative care doctors, geriatricians, politicians and pro-life campaigners.

Columnist and head of the Dublin-based Ioana Institute, David Quinn, condemned the Bill for being both “wrong in principle” and for having “incredibly far-reaching” proposals which go further than other countries that allow assisted suicide.

“For example, the definition of ‘terminal illness’ is so broad it could include dementia. It does not require that a person be within a set period of death such as six months. Therefore, the person could be in the early stages of a terminal illness with years of life remaining and still ask a doctor for a lethal drug. They only have to make the request once,” he told Crux.

No proper protection for conscience rights

In addition to David’s concerns, the bill would force healthcare professionals who have a conscientious objection to assisted suicide to make “arrangements for the transfer of care of the qualifying person”, a form of participation that goes against an individual’s conscience rights.

This is especially worrying for the hospice movement, which cares for patients near the end of their lives and is philosophically opposed to euthanasia.

In stark contrast, the archetypal Death with Dignity Act in Oregon does not require healthcare professionals to transfer such patients but only to transfer their records once the patients have themselves located a new provider.

‘A better option’

Professor Anthony O’Brien, a Clinical Professor of Palliative Medicine at University College Cork with over 35 years of experience in hospice care, has spoken out against the Bill, telling The Irish Times:

“I have met very many patients who in desperation asked to have their life ended, believing that they had no other option. With good palliative care, the overwhelming majority had occasion to change their minds. With suicide, there is no going back.

“Surely a compassionate society can be more creative in its response to human suffering than premature, self-inflicted death. Good care is always a better option.”

‘Regressive step’

Hope Ireland, a coalition of healthcare professionals and disability rights advocates, says the introduction of assisted suicide and euthanasia is a “regressive step for vulnerable people – particularly the elderly and those with disabilities”.

In their briefing document, which was sent to all of Ireland’s TDs, they highlight how the operation of similar laws in other countries have shown the consequences of legalisation are “catastrophic” for older people and people with disabilities.

For example, they state:  “In 2019, a woman with dementia who revoked her consent to be euthanised had to be held down by her family whilst the doctor ended her

life. A Dutch court approved this practice, and acquitted the doctor of any wrongdoing.”

Negative culture change

Peadar Tóibín, the leader of the pro-life Aontú party, has warned that in countries that have introduced physician-assisted suicide or euthanasia, “pressure starts to grow on older people and people with severe disabilities.”

So much so that countries such as Canada, Netherlands and Belgium have seen the number avail of assisted suicide radically increase,” he told News Letter.

“These countries initially introduced assisted suicide for a small number of really difficult cases but have now seen the numbers increase nine and ten-fold. Requests for euthanasia are extremely rare before it’s made legal but radically increase when the culture changes,” Tóibín continued.

He also said the bill could “radically change” the direction of the medical profession from the saving of life to ending it.

“We urge the government to assist people with living. To invest the necessary resources to ensure that people who are faced with difficult death have all the supports that they need to make for final journey as comfortable and pain free as humanly possible. We need to improve our palliative care and our health service but euthanasia is not the solution to the failings in our health system,” he said.

Mother knits 70 hats for premature babies to thank NHS for safe delivery of daughter born prematurely 70 years ago

A woman has celebrated the 70th birthday of her premature daughter by knitting more than 70 baby hats for the neonatal unit at Forth Valley Royal Hospital, as a way of saying thank you to the NHS.

Mary Sellstrom was 7 months pregnant when, a week before her 18th birthday in 1950, she went into labour. Her daughter, Barbara, was born weighing just 2lb 12oz (1.25kg).

Following her birth, Barbara was immediately taken away and placed in an incubator where she could be monitored by the midwifery team at the former Falkirk and District Royal Infirmary.

Mary shared how she was not allowed to touch or hold Barbara and had to remain in bed for 10 days.

The now 88-year-old said: “My husband was allowed to see the baby once through the window of the incubator room where our daughter lay. He was then asked to leave.”

“There was no touching, no holding, just looking through the window.

“I was heartbroken and longed to hold her.”

Mary revealed how she had to travel to the hospital twice a day by bus, walking nearly two miles to the nearest bus stop, to feed Barbara.

Every day Barbara got stronger. After five weeks Mary was allowed to hold and breastfeed her daughter.

“Holding her for the first time is a feeling I have never forgotten until this day,” Mary revealed.

The little fighter continued to improve and was eventually allowed home weighing 5lb 8oz. In her adult life, Barbara became a nurse, a mother and a grandmother.

Mary said that without the dedication and determination of the midwifery team, her firstborn would never have survived.

As a heart-warming gesture of thanks, Mary has spent her time during the coronavirus lockdown knitting small hats for the premature babies being cared for in the Forth Valley Royal Hospital.

She told the Falkirk Herald: “Someone had said the hospital was desperate for hats for the premature babies and I like to knit.

“During lockdown I wasn’t going out so I decided I’d knit 70 of them as Barbara was turning 70.”

Mary recently went with one of her other daughters, Jacquie, to hand the hats into the hospital.

The mother of four added: “The staff were really pleased to see so many.

“I’m now knitting sleeves for them for the babies to wear when they have a canula in.”

New guidance

The survival rate for extremely premature babies has doubled over the past decade, prompting the creation of new guidance allowing doctors to try to save babies born as early as 22 weeks into a pregnancy.

In 2008 only two out of ten babies born alive at 23 weeks went on to survive. Today it is four out of ten, according to the British Association of Perinatal Medicine.

Once a baby passes 22 weeks, the chances of survival increase week-by-week due to technical advances, better healthcare planning and the increased use of steroids.

The increased survival rates have prompted calls to review the current law in order to help lower abortion numbers and save the lives of babies.

Time for change

A spokesperson for Right to Life UK Catherine Robinson said: “This is something that Parliament should urgently revisit. It has been over a decade since time limits were last debated fully in Parliament in 2008.

“There is a real contradiction in British law. In one room of a hospital, doctors could be working to save a baby born alive before 24 weeks whilst in another room a doctor could perform an abortion which would end the life of a baby at the same age. Surely this contradiction needs to end.

“Independent polling from Savanta ComRes shows that 70% of women in the UK want to see the time limit for abortion reduced to 20 weeks or below. Our current abortion time limit is way out of line with the rest of Europe where the most common abortion time limit is 12 weeks.

“This change in guidance adds further evidence to the need for Parliament to urgently review our current abortion time limit. We support any change in law that would help lower abortion numbers and save the lives of babies in the womb. 

“It’s time that our laws were brought into line with public opinion, modern science and the rest of Europe.”