“If it were made possible, do you think Down’s syndrome should disappear from society?” Put in this stark form, the question pulls you up short. When it was posed in precisely those terms to the Dutch geneticist Hans Galjaard, a former member of the Unesco bioethics committee, it drew an equally direct reply: “Yes, that was one of my motivations,” he said.
Galjaard was talking about a new, non-invasive pre-natal testing technique. The Government is considering incorporating it into its routine screening regime during pregnancy, making this a matter of some urgency. In recent weeks campaigners have been lobbying Westminster with the aim of persuading the Health Secretary, Jeremy Hunt, not to proceed.
The elimination of particular diseases and afflictions has long been held up as a noble aspiration in medicine and science. And ridding the world of smallpox, malaria, yellow fever and so forth is surely a clear-cut case ethically.
For Richard Dawkins, it seems, Down’s syndrome is much the same. Two years ago, in one of his periodic Twitter brouhahas, he responded to a woman who had tweeted the admission: “I honestly don’t know what I would do if I were pregnant with a kid with Down syndrome.”
“Abort it and try again,” Dawkins replied. “It would be immoral to bring it into the world if you have the choice.”
Later he amplified his reasoning. “If your morality is based, as mine is, on a desire to increase the sum of happiness and reduce suffering, the decision to deliberately give birth to a Down’s baby, when you have the choice to abort it early in the pregnancy, might actually be immoral from the point of view of the child’s own welfare.”
Similar sentiments are expressed on social media every day, often in a hostile or reproachful tone. Women who admit that they have decided not to avail themselves of the opportunities offered by their doctors for screening for genetic conditions, or who choose, as Richard Dawkins puts it, to “deliberately” give birth to a child with Down’s syndrome, face accusations of selfishness and even cruelty.
But while social media and the internet provide a platform for this kind of prejudiced censure, they also offer a way of fighting back. Campaigners such as Renate Lindeman, a mother of two children with the condition, contradict Dawkins and the Twitter mob. “There is no suffering,” she insists, claiming that children with Down’s syndrome on average are of a somewhat happier disposition than those without.
Others in an emergent Down’s Pride movement reinforce the point by displaying the happy, smiling faces of their children on the net, alongside personal testimonies that challenge the public’s perceptions of Down’s syndrome, which are often stuck in the past.
For instance, one of the things many people think they know about Down’s syndrome is that people with the condition will not live long. Yet the average life expectancy for people with Down’s syndrome has increased dramatically in recent decades. In the early 1980s it was 25. Today it is 60.
In education, children with Down’s syndrome are frequently victims of the soft bigotry of low expectations. Teachers are happily surprised when they can tie their shoes. But the learning difficulties associated with Down’s syndrome span a very wide range from mild to severe.
One of the most remarkable figures in Down’s syndrome advocacy today is Karen Gaffney, who, though born with Down’s syndrome, not only completed her secondary education but went on to take a science degree, too. She also swam the English Channel to raise money for charity and has now founded her own pressure group “championing the journey to full inclusion for people with Down’s syndrome”. Gaffney’s TEDx lecture on YouTube is a must-see.
Campaigners who cite role models such as Gaffney or others like her, who have gone on to hold down adult jobs, including sometimes rather glamorous positions in acting or modelling, are not denying that there are problems and challenges associated with having Down’s syndrome. They recognise that such high achievers are the exception rather than the rule; and they do not for one moment intend to minimise the enormous efforts that parents of children with Down’s syndrome are required to make or the scale of the obstacles they have to overcome. But they do want to challenge the view that a life with Down’s syndrome is not worth living and show that Dawkins’s moral reasoning is wrong even in its own secular, utilitarian terms.
Until now, pregnant women have been screened for Down’s syndrome initially by having a nuchal translucency measurement by ultrasound at around 12 weeks gestation. This calculates the amount of fluid under the skin at the back of the baby’s neck. By reading the results, doctors can estimate the chances of the baby having one of a number of genetic conditions including Down’s syndrome.
Those women whose tests look positive are then invited to have a further test – either amniocentesis or chorionic villus sampling. Both of these procedures are termed “invasive” as they require samples to be extracted from the womb. This carries a small but significant risk of miscarriage. Some women will refuse the tests because of the risk to the pregnancy; others may refuse because they decide they want to have their baby come what may. Others still may refuse because they do not trust the tests, having heard of numerous cases of “false positives”.
For many years geneticists, including the plain-speaking Hans Galjaard, have been looking for a more reliable and less invasive test. This has now been provided by the discovery that tiny traces of foetal DNA originating from the placenta are carried around the mother’s bloodstream. This provides a window into the foetus’s genetic make-up, allowing doctors to check, using a simple blood test, whether the foetus’s DNA carries the extra copy of chromosome 21 that gives rise to Down’s syndrome.
When news of the technique first broke in the media, the spin was all positive. Journalists tended to frame the story as one about a wonderful discovery that would lead to fewer miscarriages. “Hundreds of babies could be saved each year,” rejoiced the Daily Telegraph. “Currently women … are offered an invasive test in which a needle is inserted into the womb to take a genetic sample.
“However, the procedure causes miscarriage in one in 100 cases, meaning around 350 babies are lost each year, some of which would have been born healthy. Around 1,000 women also suffer serious infections because of the procedure.”
Besides, it was argued, the new non-invasive prenatal testing (NIPT) had been made available by private healthcare suppliers and many better-off mothers had been willing to buy it for between £400 to £900 per test. The pressure was now on ministers and NHS managers to make it available free for everyone.
But according to a campaign launched in January called Don’t Screen Us Out, the numbers can tell a different story. According to the best estimate so far (from the National Institute for Health Research), only 25 fewer miscarriages per year are likely to result from the introduction of NIPT. However, these will be offset by an extra 92 abortions. This is consequent upon the fact that when mothers are told that they have a confirmed result indicating Down’s syndrome, nine out of 10 choose to abort.
The word “choose” in this context requires some qualification. Campaigners say that the system is heavily biased in favour of termination. The assumption of doctors and health workers tends to be that a mother, on being given such news, will naturally want to terminate the pregnancy. Some complain that at a moment of particular vulnerability they are simply swept along by the prevailing attitude and passively accept the default settings of the process. No one really sets out the options. In particular, no one really tells them what it would be like either to be, or to look after, a child with Down’s syndrome.
It seems likely, though, that most people will regard the 25 fewer miscarriages as a positive social gain (as they will be “healthy” foetuses that would otherwise have died); but will regard the 92 extra abortions as representing no particular loss (as they will be regarded as “defective” foetuses who really ought to be allowed to die).
The termination of a pregnancy carried out solely to prevent the birth of a foetus deemed “defective” is termed a “eugenic abortion” to distinguish it from a “therapeutic abortion”, which is one notionally carried out to protect the health or wellbeing of the mother. The use of the word “eugenic” in this context often prompts anxiety about whether some of the ideas and attitudes associated with the bogus science of eugenics – which became popular in the first half of the 20th century and which led to campaigns of mass sterilisation in America and the murder of disabled people in Nazi Germany – may be reasserting themselves today.
Down’s syndrome, though a genetic condition, is not (at least, in 99 per cent of cases) hereditary. It just happens. Preventing a Down’s syndrome child from being born does not therefore reduce the frequency of any allele (a variant form of a gene) in the gene pool or mean that there will be fewer Down’s syndrome pregnancies in the future. Abortions in this context are not helping to eradicate any hereditary disease.
So while the social pressure to terminate pregnancies likely to give rise to babies with this syndrome may have the whiff of old-fashioned eugenics about it, in the end it can’t even lay claim to the eugenics movement’s threadbare, cod-scientific justifications.
Many of these issues have been recognised by the International Bioethics Committee of Unesco, which published a report last October warning that “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. The disadvantage of a simple, safe test may be that participation is considered self-evident and presented as such by care providers, especially when financed by health insurance. This may lead to pregnant women (and their partners) not fully realising that the test results may leave them with a major and possibly extremely difficult decision.”
Consequently, one of the key demands of the campaigners is that if the Health Secretary is minded to allow the new tests to become routine, he should also impose a requirement for full and impartial information and counselling to be made available to mothers at the point of decision. To be properly impartial, it may, oddly, be better coming from a source with some knowledge of or stake in the decision, such as a Down’s syndrome support group.
Otherwise, a mother who simply allows herself to go along with what the system and the general culture expect may find herself in the position described by one of the campaigners where “nobody mentions the mental and emotional struggle she faces in knowing she played a role in her unborn child’s death. The emptiness she feels and cannot explain to her husband. The gap that often starts growing in her relationship or her mother instinct that is absent in a subsequent pregnancy. The hurt she feels every time a happy and healthy child with Down’s syndrome passes her by.”
Dennis Sewell is a contributing editor of The Spectator
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