The new Down’s Syndrome screening test and the culture of life
by Oxford Students for Life
Is it possible that what looks like medical progress to a lot of people might actually result in a societal step backwards? Can a new technology that could be a force for good also harm cultural attitudes towards life? These are some questions worth asking in relation to non-invasive prenatal testing (NIPT), which the government recently announced will be rolled out by the NHS in 2018. For those who seek to promote a culture of life, NIPT is a good example of why we need to look further than the big, obvious issues like abortion and euthanasia.
NIPT: Medical progress?
At first glance, NIPT might seem like a wholly good thing. After all, this new screening test has a 98% accuracy rate in detecting Down’s Syndrome in foetuses, among other genetic anomalies. Furthermore, as it takes the form of a blood test, NIPT carries no risk of harm to the unborn child whatsoever. In contrast, one of the current tests offered by the NHS, amniocentesis, involves extracting amniotic fluid using a needle, and results in one out of every 100 foetuses tested being miscarried. It seems obvious: if a woman wants to know whether her baby has Down’s or not, the NHS should be able to offer her the safer test.
Purely in terms of miscarriage risk, NIPT is indeed medical progress compared with amniocentesis. Furthermore, many will probably say that its purpose is simply to give women information in order to make their own informed choices about their pregnancy; NIPT is not, after all, abortion itself. To label it as somehow eugenic would be a stretch, in this view. Some women may, in fact, want to use it to prepare for raising a child with Down’s.
Image via We’re All Equal
Non-innocuous prenatal testing
So, is there a real case against NIPT?
I do think that in an ideal world, NIPT could be a force for good. But I also believe that to evaluate NIPT properly, one cannot merely look at the narrow medical facts about the procedure itself, but must also consider the surrounding cultural context in which it would be implemented. In doing so, we will realise that NIPT would indeed harm cultural attitudes to life.
The reality of medical culture in the UK today is that prenatal testing has become an established routine procedure in prenatal healthcare, to the point where many pregnant women now feel that such tests are simply expected of them. Hence, many women do not fully reflect on what they would do with the information resulting from tests before agreeing to them. This leaves them susceptible to pressure to terminate their pregnancies – and women here are indeed often pressured by healthcare professionals, as well as family members and friends, when tests result in positive diagnoses of Down’s Syndrome or other foetal disabilities. Combined with the fact that pregnant women are often not given balanced information about living with disability, being told only the negative aspects, the ‘choice’ dealt to such women cannot be said to be fully free or well-informed.
The idea that testing is just about giving more information is simplistic in the light of this reality. The statistics are a stark manifestation of this culture: 90% of foetuses diagnosed with Down’s Syndrome in the UK are aborted, a figure which is surely also partly caused by negative attitudes towards disability (though of course individual choices to terminate are often complicated and nuanced).
Inserted into this reality, NIPT will be yet another moment in the screening pathway where women are likely to face still more pressure to terminate in the face of a positive result. The fact that NIPT carries no risk to the foetus might seem like a good thing, but it also means that women will be seen as having no good reason to refuse such a test. This will increase the number of women undergoing prenatal testing and hence increase the number of women subject to pressure to abort when test results for disability are positive. NIPT is expected to result in an increase in the number of Down’s Syndrome diagnoses, and based on the current 90% rate the number of Down’s Syndrome terminations each year is thus projected to rise by 92.
It is worth noting at this point that while NIPT is indeed safer than amniocentesis, and will result in 43 fewer miscarriages due to amniocentesis each year, NIPT is not replacing amniocentesis. Rather, being a screening test offered at an earlier stage in pregnancy, NIPT serves to narrow the target group of pregnant women who will then be offered the invasive amniocentesis as a further prenatal test. Amniocentesis has a slightly higher degree of accuracy than NIPT, which may result in some false positive results.
The ‘big picture’ figures – the 43 fewer miscarriages – thus have the potential to obscure something troubling about this situation: NIPT does not necessarily make it safer for women carrying disabled foetuses to find out that information. It only reduces the number of women exposed to miscarriage risk from invasive testing. So, while women not carrying Down’s foetuses will be safer, many women with Down’s foetuses will still have a risk of miscarriage from amniocentesis, and face more pressure to terminate because of this additional test. Is it that we are unhappy with women in general being exposed to an increased risk of miscarriage, but happy with this if they have a 98% chance of carrying an unborn child with Down’s?
NIPT and eugenics
All this is enough to make us think seriously about the implication of NIPT on the culture of life. Evaluating medical technology is not always straightforward because the ‘brute facts’ of the technology are implemented in the midst of human culture. The technology of NIPT, in and of itself, is not eugenic. But given the current state of medical culture here, it will undoubtedly have a eugenic effect. Although the choice to terminate or not is handed over to the pregnant woman herself, so it might not on the surface seem like blatant eugenics, three factors in the screening regime conspire together to result in the high rate of termination of disabled foetuses: 1) The routine nature of screening, which leads to a lack of sufficient reflection on why women would opt for screening; 2) Pressure from healthcare professionals as well as society to terminate; 3) Unbalanced information presented about disabilities, which reinforces negative attitudes towards disability.
So long as the ethos of our culture is not fully supportive and affirmative of the value of disabled lives, morally neutral tests like NIPT will facilitate eugenics through apparently free choices made out of varying motives. Our culture is simply not ready for NIPT, and the way in which the invasive amniocentesis test is routinely offered to women with a higher likelihood of carrying an unborn child with Down’s must be reconsidered.
Those still sceptical of the eugenic argument should know that it is already possible for NIPT to sequence the complete DNA of unborn babies, though this is presently difficult and expensive. NIPT is currently used to test for genetic anomalies; who knows if it will one day be used to identify social features for termination?
Image via We’re All Equal
To learn about abortion and disability, visit the We’re All Equal Campaign. You can find out more information about NIPT and Lord Shinkwin’s Abortion (Disability Equality) Bill and discover how to support the campaign. Find them on Facebook here and Twitter here.
Michael Wee is the Education Officer of the Anscombe Bioethics Centre, an Oxford-based academic institute. He previously studied English and Philosophy at Durham University and more recently completed a Master’s in 20th Century English literature at Wolfson College, Oxford.