Monday, 4 July, 2022
HomeMedical EthicsRoutine screening may mean this is last generation of Down's syndrome children

Routine screening may mean this is last generation of Down's syndrome children

This year both Scotland and England introduced testing of all pregnant women for Down’ syndrome, writes MedicalBrief. In countries where early screening is routinely offered, almost all women opt to abort an affected unborn baby, consequently the global Downʼs syndrome population is therefore plummeting.

Last week, MedicalBrief reported the results of  a UK High Court challenge to the law that allows abortion up to birth for a foetus with the condition, arguing that it was “unlawfully discriminatory and stigmatising”. Heidi Crowter, who has Downʼs syndrome, challenged the law along with Maire Lea-Wilson, whose two-year-old son Aidan has Downʼs syndrome.

The government maintained there was no evidence the law discriminated against Down's. As two senior judges dismissed the case earlier, Crowter said she would appeal against the judgment, adding, "the fight is not over".

The now routine NIPT (non-invasive prenatal testing) screening is a blood test that detects the rogue extra copy of chromosome 21 that causes Downʼs syndrome.

While children with Downʼs syndrome often have a cheerful, outgoing personality, they also suffer from various 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, writes The Telegraph.

“It makes me sick 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 “It is extraordinary that instead of supporting our fellow human beings with Downʼs syndrome, and their parents, unconditionally, we are inviting their parents to end their lives. The absence from our community of people with Downʼs 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 high-profile names like 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 Downʼs syndrome into the world.

Meanwhile, the Australian moral philosopher Peter Singer, who is professor of bioethics at Americaʼs prestigious Princeton University, argues that the loss of babies with Downʼs syndrome is a harm “either balanced or outweighed by the lives of other children people will have instead”, adds The Telegraph.

Campaigners for Britainʼs estimated population of 41,500 adults and children with Downʼs syndrome say this is the road to eugenics. But they are increasingly concerned that the opinions of Dawkins and Singer reflect a majority view and that the public is behind the accelerated elimination of Downʼs 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 Downʼs 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 if the syndrome disappears. But they fear they are fighting a losing battle.

In pregnancy, the blood carries a mixture of the motherʼs cells and cells from the placenta, which are the same as the unborn babyʼs cells. NIPT testing, which is carried out in the first three months of pregnancy, is 99% accurate in picking up cells carrying Downʼs syndrome, meaning only one in 100 affected babies may not be detected. And, under the current 1967 Abortion Act, any Downʼs 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% 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, notes The Telegraph.

Across the continent, the rate of Downʼs syndrome births is falling fast. A major study published last December by the European Journal of Human Genetics reported an overall 54% decline in the number of babies born with Downʼs syndrome across Europe between 2011 and 2015, ranging from an 83% 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 Downʼs-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 Downʼs 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 Downʼs syndrome from 1,400 per year to 700. With the advent of diagnostic NIPT, Arthurʼs generation may well now be the very last significant cohort of babies born with the condition in this country.

The Downʼs 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, Downʼs 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 Downʼs syndrome to be educated alongside other children, says The Telegraph. 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.

The UKʼs obligations under the United Nationsʼ 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 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 Telegraph article – Could this be the last generation of Down's syndrome children? (Restricted access)

 

See more from MedicalBrief archives:

 

Down's syndrome takes centre stage in US abortion debate

 

Challenge to UK law on abortion of Down’s syndrome foetuses fails

 

Appeal Court ends Obs-Gynae’s 8-year ordeal over undiagnosed Down’s

 

 

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