The Future of Disabilities: Will prenatal testing transform bad brute luck into a case of expensive tastes?
[This post is co-authored by Julia Mosquera and Fay Niker]
A few days ago, the UK’s Department of Health approved the roll-out of new non-invasive prenatal testing (NIPT). The case in favour of NIPT is clear: it will provide diagnoses of Down’s syndrome with 99% accuracy and, as opposed to current tests like amniocentesis, will have no secondary effects on the mother or foetus.
But Sally Phillips’ BBC documentary ‘A World Without Down’s Syndrome?’, which aired earlier in the month, brought the issue to the attention of the general public in the hope of launching – or, more precisely, rekindling – the public debate concerning the ethics around technological developments in genetic screening. It asks us to think about the possible implications of NIPT for our society and, in particular, for people with Down’s syndrome – like her 11-year-old son, Olly.
The documentary raises many ethical questions. In this post, we want to focus on one worry that has special relevance for political philosophy. The worry has two parts: first, that NIPT would make the termination of foetuses that have tested positive for Down’s syndrome the default option and, second, that this could have unjust consequences for those who, after a positive diagnosis, nevertheless decide to continue with their pregnancy.
At present, a considerably high number of mothers and families who are provided with a positive result decide not to continue with the pregnancy (about 90% in the UK). But about a third opt-out of having the screening in the first place, many due to the potential risks associated with it. A safer and more accurate test would plausibly mean that many more screenings are carried out. Indeed, when NIPT was introduced in Iceland the termination rate rose to 100%. It is possible (or probable) that something similar would happen in the UK.
If so, it would send the message that termination is the most (or the only) appropriate course of action. Under these societal conditions, those mothers who decide to continue with their pregnancies may, it’s plausible to think, be seen as making a decision that would cry out for justification, in the eyes of many.
There are a variety of reasons that mothers who decide to continue with their pregnancies could provide in this respect. They could, for example, point to the fact that they consider abortion to be morally problematic. But this seems not to be the issue at stake here: the worry, if we understand it correctly, relies precisely on the necessity of having to provide a justification to society for choosing to continue with their pregnancy, when such necessity would not exist in the case of those who chose to terminate (given the default status of the latter).
A further, related worry emerges if we think of disabilities within the traditional luck egalitarian framework of political justice. Under this framework, the majority of both congenital and acquired disabilities give rise to inequalities that are seen as the result of bad brute luck and, therefore, as inequalities that call for compensation. But if the chances of detecting and preventing the existence of disabilities become so high, it is not difficult to imagine how society could start forming the judgement that bringing people with one of these easily detectable conditions into existence is not any longer a matter of bad brute luck.
As a result, these women and families might end up being judged more severely by the rest of the members of society for being perceived as doing something that they could have easily avoided and that comes with a cost both for themselves, but more importantly for the state – something like the result of an expensive taste. And if having a child with Down’s syndrome became an expensive taste, the next step would be to rethink the political community’s moral obligations towards these families.
Finer philosophical distinctions need, therefore, to be added to this debate. First, pregnancies carrying a disability would still be considered a matter of brute luck. And mothers who decide to carry on with a pregnancy after a positive result are not, by doing so, necessarily choosing to have a child with Down’s syndrome – had they been given the opportunity to decide what kind of child they would like to bring into the world, they would have chosen a child without a disability, in most cases at least.
Second, personal identity issues would have to be invoked and discussed with respect to the possibility of preventing disabilities. While it might be possible to prevent some disabilities, this might become possible only at the cost of bringing a different individual into existence, or by not bringing individuals into existence at all.
Hi Julia,
I’m working on related topics right now. Nir Eyal mentions the problem of ‘innocent choice’ and there are similarities between his view and the cases you discuss. I don’t think that these kinds of choice are ‘willing choices’, at least not the way theoretic philosophy would require for keeping one’s baby to count as an instance of expensive tastes. Mothers aren’t faced with the choice between bringing *this baby* into the world either with or without some form of disability; they only face the choice between having this baby or no baby. In other words, the so-called ‘alternative’ isn’t a genuine alternative for a number of parents. What I say here is, I think, compatible with your blog post, which is very interesting!
Hi Charlotte,
Thanks for your comment! Absolutely – I definitely think that the fact that many of these mothers/families don’t have the choice to have another baby, but as you say, only have the choice of having *this baby*, should make a difference in terms of the degree of responsibility to be ascribed to their choice. A similar constraint is given by personal identity issues (the choice is not between having *this baby with a disabability* and *the same baby without a disability*). Hence the concerns mentioned at the end of the post. All of these issues regarding what the available options are should also be considered to evaluate if something is an ‘expensive choice’.
Hi Julia, thanks for your post, this is such an important and difficult issue! One thing I found myself thinking about is the question of why so many women who get a diagnosis of Down syndrome for their fetus decide to terminate the pregnancy. I certainly don’t want to judge them; I don’t know what I’d do myself in such a situation. But what seems clear is that in many societies, today, having a disabled child is NOT treated as brute luck, in the sense that families have to carry many costs themselves, and there is not enough social support etc. So there seems to be a weird self-fulfilling dynamic going on: having a disabled child is de facto NOT treated as brute luck, hence people try to avoid it when they have a chance to do so, and then when someone nonetheless decides in favor, it is seen as an expensive taste. (This is not questioning your arguments, just taking the line a bit further…).
Hi Lisa,
Many thanks for your comment! I find your line of argument very interesting and challenging at the same time. I could not agree more that societies do not do enough for the support of families with members with Down Syndrome or with any other disability. Now, whether the reason why families nowadays have to end up carrying a lot of the costs themselves is because societies don’t see disability as an issue of bad brute luck, I’m not sure. It could just be that the interests of these families conflict with the interests of other causes that are also the result of brute luck and that maximise wellbeing in a greater way, and over which a government a might decide to give priority to at a particular time (I’m not myself endorsing this, especially in the case of disabilities like DS). And then as you say, the facto, disabilities end up being as neglected as other conditions which are in fact not the result of bad brute luck.
So I guess my point here has to do with how societies should treat cases of brute luck, and whether they should give absolute priority to some of these cases over others (despite this meaning neglecting some of the interests of people whose condition is the result of bad brute luck).
Hope that wasn’t too long!