OFFERING a test for Down’s syndrome is a routine part of maternity care in much of the world. Most women who get a positive result choose to have an abortion, leading to growing objections to the tests over the past few years. Campaigners are using terms like eradication, eugenics and even .
“My life is worth living,” Frank Stephens, who has Down’s syndrome, told a US congressional hearing in October. “Is there really no place for us in the world?”
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Such emotive language lays bare the ethical minefield inherent in prenatal screening. In large parts of the West, a woman has a legal right to abortion up to certain time limits. And in all other fields of medicine, more information is normally seen as a good thing. Yet many recoil from the idea of erasing a group of people because of a disability. Is there any way to reconcile these opposing values?
Down’s syndrome arises when a large chunk of DNA is duplicated, derailing fetal development. As well as the characteristic facial features, people with Down’s syndrome have some degree of learning disability and a higher chance of heart problems and other medical conditions.
The ability to test for this extra DNA in pregnancy has meant that Down’s increasingly features in debates over abortion. In the US, North Dakota has made it illegal for doctors to end a pregnancy because of a Down’s diagnosis. Similar laws were passed in Louisiana and Indiana before being blocked by courts. Ohio’s version was set to come into force this week but has also been blocked, while lawmakers in Utah are considering a bill.
This tussle isn’t confined to the US. In Ireland, one of the few places in western Europe where termination of pregnancy remains illegal in almost all circumstances, a public vote on legalising abortion is being held in May. A major argument of the No side is that the proposed law would amount to a eugenics programme for Down’s.
The issue is under the spotlight in the UK, too, thanks to a new test for Down’s syndrome that is set to be introduced by the NHS in England and Wales this year. Screening currently requires an ultrasound scan, but this only shows an increased chance of the condition. To find out for sure, a sample has to be taken from the uterus, which carries about a .
The latest test analyses DNA from the fetus that is found in the woman’s blood. It is about 99 per cent accurate, doesn’t cause miscarriage and can be done earlier in the pregnancy, from around 10 weeks. As such, some predict that more women will take up screening and have abortions.
Actor Sally Phillips, whose son has Down’s, brought the issue to attention in the UK in 2016 with a BBC documentary called . She talked of the societal benefits of diversity and voiced fears that dwindling numbers of people with Down’s would mean less acceptance of those left.
Unclear impact
The campaign group has previously called for the test to be halted, warning that the UK could follow Iceland, where almost all pregnant women given a Down’s diagnosis have an abortion. But the test isn’t widely available in Iceland; the country has a high rate of abortion with the standard test, says Thórdís Ingadóttir, head of the .
Because of this, it is hard to predict how much of a difference the test will make in the UK. At the moment, about . One analysis suggests the predicted higher take-up of the blood test would lead to about an , so campaigners say this would lead to 90 extra abortions.
That would mean the number of babies born with Down’s syndrome would fall from about . It’s a long way from eradication, but Lynn Murray of Don’t Screen Us Out says any drop, however small, should be avoided. People with Down’s syndrome are already a minority, she says. “If you think about them as a protected minority we are not doing very well at protecting them.”
But the figure of 90 extra abortions a year might be an overestimate. When researchers looked at data from a group of hospitals that trialled the test in 2015, they found that while more women took the test than currently undergo screening, only .
This suggests that many of the extra women opting for testing aren’t planning to have an abortion, but want to know if their baby has Down’s so they can prepare, says at Great Ormond Street Hospital in London, who took part in the study.
The 90 per cent abortion rate figure also ignores the fact that only 66 per cent of women accept screening. While some may be put off by the miscarriage risk, presumably others don’t agree with abortion or would simply be happy to have a child with Down’s syndrome.
Fears about a decline in the number of people with Down’s also seem unfounded. Overall, the proportion of people with Down’s in the UK population has , due to a steady rise in Down’s conceptions, as people start families later in life, and medical advances enabling people with Down’s syndrome to live longer.
There is, however, another complaint about the screening system. All forms of health screening are supposed to offer choice. When it comes to Down’s syndrome, some parents say they are encouraged to end the pregnancy, whether overtly or subtly, says Murray.
Respectful language
Public Health England says it is improving training for staff involved in screening, and overhauling the leaflets given to parents to avoid dwelling only on negatives about the condition. The information will be more up to date and balanced, says Julian Hallett of the , a charity that was consulted on the revamp.
For instance, all leaflets now refer to the “chance” of a baby having Down’s, not the “risk”. Helen Doe, mother of a 2-year-old boy with Down’s syndrome, welcomes the change. “The language needs to be respectful and not insulting,” she says.
Yet the wider debate around screening for Down’s may be here to stay. “In the US, it’s been found to be a successful anti-abortion tactic,” says Jane Fisher, head of UK charity . “It has become a battleground.”
Not all families of people with Down’s syndrome are happy about that. In Ireland, after anti-abortion campaigners used pictures of children with the condition on billboards and leaflets, Down Syndrome Ireland said that this was .
And abortion campaigners say this tactic is unfair to women. After all, under UK law (apart from in Northern Ireland), a women can always end her pregnancy before 24 weeks if continuing it would cause distress. “It can be relationship break-up, financial hardship – it can be for pretty much any reason,” says Ann Furedi, head of the , a non-profit abortion provider. So it would seem incongruous to say having a fetus with a life-long medical condition cannot be a valid reason, she says.
“You might disapprove of a woman’s reason for an abortion, but it’s not your decision to make,” says Furedi. “It’s a matter of personal choice.”
On the other hand, Down’s pregnancies are treated differently in a key respect. In the UK, where the usual time-limit is 24 weeks, abortions can be carried out until the very end of pregnancy if the fetus has serious “physical or mental abnormality”.
A would remove this longer time limit. It is unlikely to become law, but may bring renewed attention to the debate. Iceland also plans to re-examine a similar exemption.
In a time of growing rights for people with disabilities, it can seem hard to justify a disparity in law that Ingadóttir calls “outright discrimination”. Yet for some abortion campaigners, no infringement on abortion rights is acceptable. Resolving whose rights take precedence isn’t going to be easy.
This article appeared in print under the headline “Difficult decisions”
