Europe is on track to achieve something Hitler couldn’t

12 Responses to Europe is on track to achieve something Hitler couldn’t

1. C.L. says:

   8 October, 2021 at 10:59 am

   Could this be the last generation of Down’s syndrome children?

   Globally, the Down’s syndrome population is plummeting – leading to suggestions that we may be witnessing the elimination of the condition

   By Lois Rogers
   1 October 2021

   ‘I had this vision of someone with a pudding-basin haircut following me round the supermarket. I thought I’d never go on holiday or have any sort of life ever again.’ So says 42-year-old actor Rebecca Hulbert of her initial reaction when her angelic-looking two-year-old, Arthur, was born.

   ‘I didn’t know he had Down’s syndrome until he was born,’ she explains. ‘It scares me to think about what I would have done if I had found out when I was pregnant. I had never met anyone with the condition, I just had these stereotypical images of what it was. But Arthur is fantastic. He’s humorous, he’s bright and he’s an absolute joy.’

   Had Hulbert discovered she was pregnant in the last few months, things may have turned out differently. Since July, all pregnant women in England have been routinely offered NIPT (non-invasive prenatal testing) screening, a blood test which detects the rogue extra copy of chromosome 21 that causes Down’s syndrome. The test has been offered in Scotland since January.

   While children with Down’s syndrome often have a cheerful and outgoing personality, they also suffer from a range of disabilities, from mild intellectual impairment to severe learning difficulties, heart problems, complete loss of hearing or eyesight and increased susceptibility to dementia in old age.

   In countries where early screening is routinely offered, almost all women opt to abort the affected unborn baby and try again. The global Down’s syndrome population is therefore plummeting.

   ‘It makes me sick to my stomach that we are going down the road of eliminating people,’ says Hulbert. Dr Helen Watts of the Anscombe Bioethics Centre, an Oxford-based Roman Catholic charity, agrees. ‘It is extraordinary that instead of supporting our fellow human beings with Down’s syndrome, and their parents, unconditionally, we are inviting their parents to end their lives. The absence from our community of people with Down’s syndrome leaves those [affected] individuals who do succeed in being born with a justified sense that they are no longer welcomed by society.’

   On the other side of the debate are such high-profile names as Richard Dawkins, Oxford emeritus professor of biology, who argued earlier this year that the advent of screening means it is now ‘immoral’ to bring a child with Down’s syndrome into the world.

   Meanwhile, the Australian moral philosopher Peter Singer, who is professor of bioethics at America’s prestigious Princeton University, argues that the loss of babies with Down’s syndrome is a harm ‘either balanced or outweighed by the lives of other children that people will have instead’.

   Campaigners for Britain’s estimated population of 41,500 adults and children with Down’s syndrome say this is the road to eugenics. But they are increasingly concerned that the opinions of Dawkins and Singer appear to reflect a majority view and that the public is broadly behind the accelerated elimination of Down’s syndrome from society. They argue that many of the disability traits linked to the syndrome can be treated.

   Crucially, they point out that people with Down’s syndrome, who are also protected from breast and many other types of cancer, offer a rich seam of genetic information relevant to the entire population, which we would lose at our peril if the syndrome disappears. But they fear they are fighting a losing battle.

   In pregnancy, the blood carries a mixture of the mother’s cells and cells from the placenta which are the same as the unborn baby’s cells. NIPT testing, which is carried out in the first three months of pregnancy, is 99 per cent accurate in picking up cells carrying Down’s syndrome, meaning only one in 100 affected babies may not be detected. And, under the current 1967 Abortion Act, any Down’s syndrome baby that slips through the screening net can be legally aborted right up until birth.

   In countries such as Denmark, which introduced NIPT screening in 2006, more than 95 per cent of affected pregnancies are aborted, with between only two and nine mothers a year opting to continue with an affected pregnancy. In Iceland, no affected babies are believed to have been born since 2017.

   Across the continent, the rate of Down’s syndrome births is falling fast. A major study published last December by the European Journal of Human Genetics reported an overall 54 per cent decline in the number of babies born with Down’s syndrome across Europe between 2011 and 2015, ranging from an 83 per cent fall in Spain to nil in Malta, where abortion is completely banned.

   The UK is somewhere in between. Ahead of the routine introduction of the NIPT test, nuchal translucency ultrasound scanning, which detects a Down’s-related fat pad in the necks of affected babies early in pregnancy, had been offered in combination with a test for blood biomarkers associated with Down’s syndrome for around 20 years to older mothers deemed to carry greater risk of genetic abnormality.

   The use of these tests has already halved the number of babies born in the UK with Down’s syndrome from 1,400 per year to 700. With the advent of diagnostic NIPT, Arthur’s generation may well now be the very last significant cohort of babies born with the condition in this country.

   The Down’s syndrome community is now fighting a rearguard action to change the narrative and make people aware that, thanks to modern medicine, their children can attend mainstream schools, live independently and enjoy a life expectancy similar to the rest of us.

   Fifty years ago, Down’s syndrome was considered a serious disability. Most affected children were taken from their parents, not educated and raised in institutions. The majority died before adulthood. Now most of the associated complications, including learning difficulties, can be fully or partially treated.

   It is also routine for children with Down’s syndrome to be educated alongside other children. People with the condition now have a life expectancy of 60-plus. The existing 1967 law, however, still means that perfectly viable unborn babies can be destroyed, theoretically up until the last day before they would naturally have been born.

   Twenty-six-year-old Heidi Crowter, who has Down’s syndrome, has challenged this law. With Maire Lea-Wilson, whose two-year-old son Aidan has Down’s syndrome, she has led a campaign called Don’t Screen Us Out (DSUO), which has raised more than £100,000 from 3,000 people who contributed to a crowdfunding campaign to challenge the late abortion provision, which Crowter says is ‘offensive and doesn’t respect my life’, in the high court.

   The UK’s obligations under the United Nations’ Convention on the Rights of Persons with Disabilities (CRPD) mean that disabled people and their families should be included in society and supported by it. But campaigners such as Crowter argue 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.

   The legal case argued that allowing abortion for Down’s syndrome up until birth ‘stereotypes and demeans’ people and is incompatible with the European Convention on Human Rights, and that this section of the UK’s 1967 Abortion Act should be removed. In the high court ruling handed down last month, however, Lord Justice Singh and Mrs Justice Lieven rejected DSOU’s challenge, meaning the current law still stands.

   Lea-Wilson, a 33-year-old chartered accountant who lives with her husband Simon, 35, in Brentford, west London, says she was pressured by doctors to abort Aidan right up until a few days before he was born.

   At 31, and with one child already, Tom, who is four, she did not think her baby was high risk for Down’s syndrome (it generally affects pregnancies in older mothers) and she had declined screening during her pregnancy. ‘I went to primary school with a little girl with Down’s syndrome,’ she says. ‘She was a few years younger than me and I didn’t really know her, but I didn’t think the condition was that much of a problem.’

   At 34 weeks, however, she had a growth scan, which showed Aidan had an intestinal block: a third of babies with this condition have Down’s syndrome. He also had short femurs [thigh bones] and a hypoplastic [missing] nasal bone, which are also associated.

   ‘I had quite a lot of scans over a few days, either with my mother or my husband there. They indicated he had Down’s syndrome and I was given a huge amount of very negative information – there was a risk of stillbirth, he would need heart surgery, he might not be able to walk or talk or live independently. It was all worst-outcome information,’ she says.

   ‘I was completely devastated. We were asked if we wanted a termination and it was implied that was what we should do. It was very traumatic. He was born by caesarean two weeks later and I was asked literally a few days before that if I wanted to terminate.’

   Despite this, however, Lea-Wilson says the birth was ‘actually a very beautiful, happy experience. Everyone was laughing when he came into the room. The obstetrician who delivered him was very different from the people who had given me the diagnosis when I was pregnant, because this man told me he had friends with a Down’s syndrome child.

   ‘I am really worried about the drive to screen out Down’s syndrome,’ she says. ‘There are fewer [Down’s syndrome] babies being born and so fewer people understand it, even though the prospects of a happy life for them have now never been better.’

   In America, funding limitations on the availability of testing, and opposition to abortion, have meant that Down’s syndrome births have declined by only a third. Those opposing termination of affected foetuses there, meanwhile, have a compelling argument to make.

   ‘We are the canary in the eugenics coal mine,’ Frank Stephens told Congress in 2017. ‘We are helping to defeat cancer and Alzheimer’s and we make the world a happier place.’

   Stephens, 39, who has Down’s syndrome himself, was arguing that federal funds should be used to improve the lives of affected people, rather than screening out babies with the condition – not least because of the valuable genetic information they provide for the wider community.

   And, agrees geneticist Professor Brian Skotko of Harvard Medical School, who is also a director of the Down’s syndrome research programme at Massachusetts General Hospital, ‘People with Down’s syndrome probably do hold the keys to unlocking so many disease mysteries for their neurotypical counterparts. They are likely to have the keys to Alzheimer’s disease, breast cancer and other solid tumours because they have three doses of the genes on chromosome 21, while the neurotypical person has two copies.’

   One of these genes, explains Skotko, is the APP gene, which in excess starts to produce amyloid. This builds into plaques that accumulate in the brain and are believed to be a driver for Alzheimer’s disease. People with Down’s syndrome are more likely to develop Alzheimer’s, and at an earlier age – about 50 per cent develop it by the age of 50. But ‘not everyone with Down’s syndrome shows signs of dementia or Alzheimer’s, even though they all have that extra copy of the APP gene’, says Skotko. ‘We need to know why that is.’

   People with Down’s syndrome ‘want to be worked with, not worked on’, Skotko adds. ‘They are not guinea pigs, they are individuals who have a right to health and happiness. Their contributions to science will benefit not only themselves but all of us. There are other active clinical trials going on with people with Down’s syndrome to test vaccines and pharmaceuticals. If they hold potential for them, they will hold potential for all of us.’

   There is so far little evidence of this view in the UK and Europe. While the charity Disability Rights UK issued a press release in July supporting Crowter and Lea-Wilson and calling for an urgent change in the 1967 Abortion Act, and Down’s Syndrome Scotland condemned late terminations of pregnancy as a ‘further example of the prejudice and ignorance directed at the Down’s syndrome community’, the London-based Down’s Syndrome Association appears conflicted between supporting the elimination of Down’s syndrome by prenatal screening and abortion, and supporting the interests of people with the condition.

   They have declined all interviews on the subject and simply produced a two-line statement saying they welcome ‘further debate’ around the issues raised by Crowter’s challenge of the abortion law.

   Meanwhile, Liam Fox MP has put forward a Down’s Syndrome Bill, which will be debated this autumn. Backed by Tommy Jessop, an actor with Down’s syndrome whose many credits include Line of Duty, it aims to set out a national strategy to identify and meet the needs of all adults and children living with the condition. A similar national strategy to assist people with autism became law in 2009, although it is not clear how much difference that has made.

   There are, now, increasing numbers of people with Down’s syndrome in the public eye – including Jessop, Daniel Laurie in the BBC’s Call the Midwife and Liam Bairstow in Coronation Street.

   Last month, CBeebies, the BBC’s children’s channel, announced George Webster, who has Down’s syndrome, as a new presenter. Yet Russell Watkins, a spokesman for Down Syndrome International, is clear on which way the wind is blowing. ‘In most countries in the global north there is an appetite for screening out Down’s syndrome,’ he says. ‘Getting hard numbers is difficult, but anecdotally we think the number of births is going down a lot.

   ‘I have a daughter with Down’s syndrome who is five in October. The test was not free in 2017 [when she was conceived]. I would have had to pay £300 for it. We had the money but it wasn’t a direction we wanted to go down and if we had chosen to have the test it wouldn’t have altered our decision.

   ‘We weren’t afraid or worried about a diagnosis of Down’s syndrome. We weren’t going to choose to have a termination. We have an understanding of the condition.’

   The UK Government has so far rejected Crowter and Lea-Wilson’s argument to amend the 1967 Abortion Act, saying there is no evidence of a link between the law and discrimination against people with Down’s syndrome. The failure of DSUO’s high court challenge last month confirmed this is still the prevailing view of the powers that be.

   For now, Rebecca Hulbert and thousands of others are keeping their fingers crossed. ‘I feel very sad and worried,’ she says. ‘Are we trying to create a master race of identical children all capable of going to Oxford, or do we also want people who can read how you’re feeling and give you a hug? I would say we need more Arthurs, Aidans and Heidis in this world.’
2. Not Trampis says:

   8 October, 2021 at 11:46 am

   This is disgraceful. I seem to recall a case in Melbourne whether a woman demanded aan abortion because the child might have had dwarfism.
3. cuckoo says:

   8 October, 2021 at 12:01 pm

   I seem to recall a case in Melbourne whether a woman demanded aan abortion because the child might have had dwarfism.

   I recall that. What if they develop a prenatal genetic test for predisposition to, say, schizophrenia? Wouldn’t we just be doing those poor people a favour by killing them in utero? If only there were a catchy name for this, like, um, lebenunswert.

   And like a reliable bubble of marsh gas, up plops Peter Singer. There was a good profile on him years ago in the New Yorker, back when it was still a magazine, which made the point that Singer, despite all his pseudo-philosophical musings about cost-benefit calculus for human life, paid for full time in-home care for his own elderly and disabled mother, despite her own previously expressed wish not to linger in such a condition. When queried on the contradiction, he argued that by doing so, he was providing an income for the carer, and therefore a ‘good’.
4. C.L. says:

   8 October, 2021 at 12:08 pm

   It’s hard to believe Singer maintains any kind of viable career.
   He’s a monstrous lunatic.
5. Cassie of Sydney says:

   8 October, 2021 at 1:43 pm

   Thank you C.L…..I find this both chilling and upsetting.
6. rosie says:

   8 October, 2021 at 3:36 pm

   I don’t think people have any idea what they are missing out on.
7. Boambee John says:

   8 October, 2021 at 4:31 pm

   So Dawkins and Singer accept the Nazi terminology of “Life unworthy of life” do they?
8. Lee says:

   8 October, 2021 at 4:34 pm

   From what I have heard of him, Singer is an absolute POS.
9. Old School Conservative says:

   8 October, 2021 at 11:20 pm

   In a similar vein to the doctors who routinely move down the Downs=abortion route, today I heard that much of the increase in Caesarian sections comes from doctors’ desire for interruption-free weekends.
   No more pesky natural deliveries in the middle of the night or while you are on the golf course.
10. Not Trampis says:

    9 October, 2021 at 8:19 am

    No.
    My wife had two. It is safer. specialists on the gold course is a myth from the 60s.
11. Lee says:

    9 October, 2021 at 10:39 am

    My former GP told me years ago that many doctors really do spend a lot of time on the golf course.
12. rosie says:

    9 October, 2021 at 4:17 pm

    I think the caesarean for the golf course is an old wives’ tale.

    Most women in the public system these days would be lucky to have an obstetrician pop their head around the door.