Guest Post by Nathan Emmerich, Queen’s University Belfast
On Wednesday night, BBC2 broadcast a documentary entitled ‘A World Without Down’s Syndrome?’ Even if you did not see the programme itself, you may have heard about it on the radio, read some of the commentary published over the past week, or spotted it on Twitter under the hash tag #worldwithoutDown’s. In my case, it was the presenter Sally Phillips’s appearance on Frank Skinner’s On Demand, that first drew my attention to the programme. There, Phillips talks about Peter Singer’s appearance on HARDtalk (in which he discusses related issues) and – whilst she is hardly alone in doing so – I felt that she misunderstood what Singer has to say. As a result I intended to watch the documentary to see which bioethicists appeared and if their views were represented accurately.
Despite the programme consisting of Phillips speaking with various people involved with questions re: testing for Down’s Syndrome – including doctors, scientists, individuals with the syndrome and their parents, those who run support groups and one brave women who had terminated a pregnancy following a positive test for Down’s – she did not actually speak to a bioethicist or, indeed, explicitly discuss any bioethical ideas.* Thus, whilst one could think that this documentary was about a bioethical issue – prenatal testing and screening for Down’s Syndrome – there was not any real discussion of the matter from a bioethical perspective.
Of course, in any documentary like this one has to make choices and it may be that including a bioethicist was thought to have been one talking head too many. Nevertheless, there were points in the programme where I thought a bioethicist could have made an interesting and vital contribution. For example, at one point Razib Kahn – an individual famed for sequencing his son’s genome before his birth – makes the oft-repeated claim that science has no morality. This is something that many would dispute: facts about human beings often come laden with values, particularly when it comes to medical practice and genetic counselling. A bioethicist could have pointed out that not only does ‘the science’ shape the moral landscape, and lead us in certain directions, but that technologies such as Non-Invasive Prenatal Testing (NIPT) – the focus of this programme and, in 2015, a special issue of the journal Bioethics – can have an inherent moral dimension. This is an idea that can be applied to things like ultrasounds, a technology that seems (at first) relatively innocuous and morally neutral.
Furthermore, a bioethicist could have helped Phillips to formulate explicitly something that remained an implicit feature of the programme. When they are presented with a positive result for Down’s Syndrome, parents-to-be are not only given a good deal of medical information that itself seems largely negative, but it is often clear that the healthcare professionals delivering the diagnosis consider it to be an overwhelmingly negative event. In her programme Phillips spends a lot of time trying to point out that this level of negativity does not accord with her experience of raising a child with Down’s Syndrome. Indeed, it is at odds with the experience of many other similar parents, and with those who have Down’s Syndrome themselves. As such, the information itself and the attitude of healthcare professionals could be seen as misleading.
As the director of Antenatal Results and Choices, Jane Fisher, has pointed out, Phillips’s positive experiences are connected to the particulars of her son’s condition and the level of support available to her. Nevertheless, knowing that those with Down’s Syndrome can have rich, happy, and fulfilling lives and make a positive contribution to the lives of those around them would seem to be vital if informed choices are to be made. Such knowledge will not, of course, make the decision whether or not to have a child with Down’s Syndrome any less complicated. Indeed it is likely to increase the complexity of the decision. Nevertheless, it would be wrong to ignore this complexity simply to make the choice to end a pregnancy a little easier.
Another part of the problem with our thinking about testing for Down’s Syndrome and NIPT as a moral technology is that it is reactive. We imagine that the test itself is benign, and that it is only when a positive result occurs that further discussion is required. This allows us to slip into talk of screening or providing the test to the majority of pregnant women as a matter of course. Instead, we should be thinking about individuals electing to have the test, and of ensuring that women are in a position to give their informed consent to being tested. This is a decision that involves thinking through how one might respond to the results in advance of getting them.
Thus if a couple decides they are not concerned about the possibility of having a child with Down’s Syndrome then there is no need for them to have the test. Unfortunately, as demonstrated by the experience of one of the women Phillips spoke to as part of her documentary, the medical profession has not yet fully recognised the fact that not taking a test can represent a valid, thoughtful, and reasoned response to the possibilities they represent. Furthermore, this is the case despite the fact that healthcare has become constituted around what Annemarie Mol calls the logic of choice, rather than the logic of care. Indeed, given the ‘choices’ that are realistically available to pregnant women we might think this logic to be little more that rhetoric. The fact that ultrasounds have become routine and, today, we barely consider the issue of informed consent in relation to its use, testifies to the way choice is a feature of some medical practices but not others.
As NIPT eliminates the risks presented by amniocentesis there is a distinct possibility that it will rapidly become routine, provided as a matter of course, and something women have little choice about. However, the issues involved with prenatal testing are more complex than those raised by the use of ultrasound scans. As such, instead of simply adopting it wholesale, healthcare professionals should be better prepared to discuss the implications of NIPT and to ensure that women and their partners are informed about the possibilities such tests present. As pointed out in Phillip’s documentary, amniocentesis was introduced with little in the way of public debate. This meant that those involved with the test and, in particular, the pregnant women who were given it, became what Rayna Rapp calls ‘moral pioneers’; they became the first to properly address the ethical issues raised by the test and its results.
The same approach should not be taken if and when NIPT comes to be commonly used. Whilst they are often treated as such, the issues raised by NIPT are not necessarily matters that individuals taking the test will face. Rather, as Phillip’s documentary tries to makes clear, the questions raised are not simply ethical but political, and involve questions about the kind of society we want, both for ourselves and for those with conditions like Down’s Syndrome. If parents are to have a real choice about whether or not to have a child with Down’s Syndrome then they need to know that this choice will not only be respected but that they and their child will be welcome and supported by the society of which they are a part.
‘A World Without Down’s Syndrome?’ was an excellent programme that raised some vexing questions about pre-natal testing, something that offers us an increasing ability to test for various conditions or risk factors – and not just Down’s Syndrome. Facing these challenges and deciding how to manage and implement this technology is something we must collectively engage with. Whilst Phillips has engaged with bioethicists elsewhere, appearing alongside Professor Tom Shakespeare on BBC Radio 4’s Today programme for example, their absence from the documentary itself was a missed opportunity. Bioethicists might not have all the answers, and certainly should not be treated as if they do. Nevertheless, their knowledge can increase the sophistication of public debate, and they are a resource that filmmakers ought to seriously consider drawing on when making programmes like this.
* [Editor’s Note: Please be advised that both Julian Savulescu and Dominic Wilkinson from the University of Oxford spoke to programme makers, but Savulescu was unable to take part in filming, and the programme makers did not progress to filming with Dominic Wilkinson.] After I published this on my own blog I exchanged tweets with Sally Phillips and learnt that she had spoken to Professor John Harris as part of the documentary but, unfortunately, this had not made the final edit of the programme. Furthermore, Duncan Wilson and Darryl Gunson both drew my attention to the fact the Professor Becky Bennett is thanked in the credits. Clearly, then, there was some bioethical input into the making of ‘A World Without Down’s Syndrome’ – even if this input was not foregrounded in the actual filming/ the final cut. Nevertheless, I do think that the field has more to offer programmes like this. Not least in using the range of existing arguments to shaping the way they are conceived and made. Or, to put it another way, for programmes such as this to be conceived and made in such a way that they reflect the range and shape of existing bioethical argument on a given topic.