A new procedure is being rolled-out in the NHS which could potentially remove Down’s syndrome from society forever. On the face of it, this seems like a great thing, Down’s is a condition that many want a cure for, though Down’s children often give people great joy and live satisfying lives, but this particular procedure has some quite severe consequences if we follow through with it.
The current prenatal tests for Down’s syndrome are either fairly risky in that it the chance of the test procedure killing the child is about the same as the likelihood the child has the condition (and so not so many mothers take those tests as they would the new one), and they’re not particularly good at identifying when an unborn child has Down’s. The new test should soon be available on the NHS and ‘is done from week 10 of pregnancy and detects Down’s syndrome with 99% accuracy’. Whilst the procedure being safer is of course, in itself, a good thing, the consequence is that virtually every parent is likely to be expected to take this procedure by society and probably by the NHS – even if they don’t have to take the test – as is the case in Iceland. The negative consequence of this is that it becomes very difficult for a parent to choose to keep a child with Down’s syndrome. This is not because having a child with Down’s is depressing and life-ruining (indeed, Sally Phillips, who’s acted in Miranda and Bridget Jones, finds the opposite), though the dominant narrative is that it is, but because society and, thus, government, will probably not be so willing to provide support (practical and financial) for parents who make the explicit choice to have Down’s children. Because whilst it’s not necessarily depressing to have a child with Down’s, it’s certainly hard work, and society has to bear some of that burden. To avoid bearing this burden, society is likely to put pressure on prospective parents of Down’s children to abort them. So, actually, rather than freeing women to have the choice of whether they want to bring a Down’s child into the world or not and thus reducing the pressure on them, the pressure on them is potentially actually increased as they are forced to consider the impact this has on others and as they realise they may not be able to get the support they need.
In Iceland, where the new testing procedure for Down’s is used, 100% (or nearly 100%) of Down’s syndrome pregnancies have been terminated (according to the chair of the Down Syndrome Association in Iceland, apparently confirmed in the BBC documentary that aired October 5th 2016) possibly because of this pressure on women to choose a certain way. In Denmark, 98% of Down’s syndrome pregnancies in 2014 were terminated. In the Netherlands, in 2013, it was 74%. In the UK, it is 90%. In Denmark, screening is automatically planned when a woman is pregnant. In China, 95% of unborn babies with Down’s are aborted, with screening being encouraged.
Is this really just the woman’s personal choice to abort or is society pressuring women into this? With the new test, it is estimated that an extra 195 babies with Down’s could be diagnosed in England and Wales. Given the 90% rate, this means that around 175 more Down’s babies per year could be aborted if the new test is used widely (as it would if introduced in the NHS). The person who wrote the study claims that actually most of these pregnancies with a positive Down’s diagnosis with the new test wouldn’t abort, but given that this person is also the developer of the new test it’s difficult to trust her statement. Really, the only practical consequence of the introduction of this new test, in the long-term, is that it could be that a whole group of people is wiped out because society deems them as abnormal, unwanted and burdensome.
Further, this test and subsequent abortions opens the door to abortions based on selection for other non-life-threatening conditions. People could choose to abort because their unborn is child is diagnosed with autism or schizophrenia, perhaps even low IQ. Because children are deemed to have a worse quality of life they could be blocked from being born with, evidently, no choice of their own in the matter. Yet, despite the very high abortion rates for unborn babies diagnosed with Down’s, the American Journal for Medical Genetics in 2011 found that only 4% of parents with a Down’s syndrome child regretted having them, only 4% of siblings would ‘trade their sibling’ who has Down’s syndrome and only 4% of individuals with Down’s ‘expressed sadness about their lives’. So, whilst of course Down’s syndrome is a condition which is not ideal and one which can get in the way of people’s lives, is it really justified to increase the number of people with Down’s syndrome who are aborted by introducing this new test? Parents are evidently not getting the right information about having children with Down’s – they usually get a negative one or don’t get much information at all which leads them to getting an abortion the vast majority of the time, even though actually parents of Down’s children and the children themselves are happy. Until prospective parent’s of Down’s children are better informed, and until perhaps the abortion rates for Down’s children more closely match the rates of those who actually regret having them and those children who don’t like their lives, this new test which could increase the number of Down’s children aborted must not be introduced.
There needs to be good government support for those who have children with Down’s – so that those who have them are supported in the extra effort required to raise them. Some ideas on extending government support could be: free childcare extended for those with Down’s; Disability Living Allowance (DLA) increased; Carer’s Allowance made more generous in its terms. Whilst suggestions like these will of course be costly to the state, it is definitely worth it if it means that parents get the support they need in raising their children, and Down’s children are harder to raise than those without Down’s. As mentioned above, this doesn’t mean that the parents or their children are unhappy, it’s just that they need the additional support. If the new pre-natal test was introduced, however, it is likely that society would view raising Down’s children as even more of a choice than it does at current and may be less willing to support families who make the choice. Thus, not allowing the new procedure to go through may make society more willing (than otherwise) to support those with Down’s children.
This new test may put pressure on women rather than release it, help open the door to future selective abortion on conditions which are not life threatening and further encourage parents to ignore the happiness of the lives of those who have Down’s syndrome and their friends and families, unfairly influencing their decision. Whilst I think it would be good for the condition to be cured, this is not the way to go about doing it.