The new Down’s Syndrome screening test and the culture of 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 20^th Century English literature at Wolfson College, Oxford.  

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Five things we learned from Fiona Bruce on sex-selective abortion

To conclude our Pro-life Feminism fortnight, last Friday, we had the pleasure of hosting Fiona Bruce, MP for Congleton in Cheshire, to hear about the huge impact sex-selective abortion still has in the UK as well as how ability-selective abortion laws promote extreme inequality. She told us about her attempt to clarify the 1967 Abortion Act, in order to raise awareness and prevent sex-selective abortion from continuing in the UK.

This is an issue which OSFL has discussed previously, and which has been making the headlines again in the last few weeks, and is always pertinent to the pro-life debate. For those of you who missed Fiona Bruce, here are five key points to take away from her talk regarding sex-selective and ability-selective abortion and the law:

It is very difficult for MPs to bring forward a matter they feel needs changing in the law.

Fiona explained that the main way MPs are able to bring an important issue concerning the law to the attention of parliament is to apply for a 10 minute rule bill, a type of private members bill. This is a chance to bring forward a bill to change or clarify the law by giving a ten-minute talk in the House of Commons on a Friday; around 20 bills for every 400 applications will be selected at random. The bill gives MPs a chance to raise awareness in the House and ask others for support, but does not itself actually lead to a change in the law. Fiona herself put forward a private members bill highlighting the ambiguity in the law regarding sex-selective abortion, and her arguments were so convincing that the bill won 181 votes to 1. Following from this, Fiona proposed an amendment to the Serious Crime Bill which read: ‘Nothing in section 1 of the Abortion Act 1967 is to be interpreted as allowing a pregnancy to be terminated on the grounds of the sex of the unborn child’. However, this was rejected in parliament. More information can be found here.

 

The 1967 Abortion Act is unclear on the matter of sex-selective abortion

The act does not mention the matter; this has led to some abortion providers such as BPAS stating that it is not illegal practice because the law is ‘silent’ on the matter. This is simply not true. The 1967 Abortion Act simply allows exceptions to legalise abortion under certain conditions. Sex-selective abortion is not one of these exceptions and therefore it is illegal.  Currently, the British Medical Association condones sex-selective abortion in cases where the sex of the foetus may have an impact on the state of the mother’s mental health; this feeds into the explicit element of the law concerning abortion on grounds of danger to the health of the mother. However, Fiona noted that the sex of the child in itself is not where the threat of danger to a mother’s health comes in – it is rather the abuse that she may suffer as a result of the sex of her child which is where the danger lies, and this is what we ought to be trying to change. Fiona stressed these women need help and support as a long-term solution to this problem.

 

Sex-selective abortion really does happen in the UK

Fiona told us two anecdotes regarding cases of sex-selective abortion in the UK; one involved a mother whose two eldest children were girls – as the eldest of six girls herself, remembering the upset and anger her parents went through every time they came home with another girl, she faced similar emotions and stress during her own pregnancy. She decided to abort her third child after she found out it was a girl to avoid bringing further dishonour to her family. The second involved a woman whose husband began to physically abuse her and eventually request a divorce after discovering that their unborn child was a girl. The issue with sex-selective abortion being under-recognised in the UK arises from women facing abuse and having to give alternative reasons for the abortion of their unborn child. It is important to stress that sex-selective abortion is not just practised within certain communities, either. ‘Family balancing’ has entered our terminology, for example. We have to tackle sex-selective abortion not simply on a legal level, but by recognising the root causes which lie in the devaluing of female foetuses, domestic abuse and misogyny: problems which are still present, if brushed under the carpet, in the UK.

 

There is currently a movement to change the law regarding abortion and disability

Although Fiona’s amendment to the Serious Crime Bill was rejected in the end this time round, there is now a new motion to change the law surrounding abortion and disability. Lord Shinkwin has introduced the Abortion (Disability Equality) Bill. At the moment, abortion is allowed up to birth for ‘serious disability’, however conditions such as club foot and cleft lip and palate, which are treatable conditions are included. The arguments involve the thoughts that the law promotes inequality and discrimination against disabled people, and is out of date since it does not recognise the essential contribution that people with a disability bring to the community. As society promotes equality for all, the abortion laws seem to contradict this. Support is coalescing around this movement at the moment, offering hope for the future. You can support and follow the Bill here.

 

Under UK law, medical practitioners have the right to not participate in abortion

The Abortion Act of 1967 states that no person must be made to participate in carrying out an abortion if they have a conscientious objection to the procedure, yet there is pressure on doctors and nurses today to overlook this, regardless of their beliefs. Fiona argues that we should discourage discrimination against those who wish to opt out from such procedures, and that more should be done to raise awareness that this is a right that people have.

Sex-selective abortion is an issue which is unlikely to disappear as long as our culture fails to truly value women, and it is indicative of the way in which abortion is intrinsically linked to the oppression of the vulnerable: its victims are all too often women, or the disabled.

Pro-life Feminism Fortnight was a great success: we have raised awareness of the intersection between the pro-life movement and feminism, hopefully demonstrating not only that it is possible, but that it is imperative to be both pro-life and feminist, and have raised money to support two at-risk babies for a month through ‘Women’s Right’s without Frontiers’, who oppose forced abortion, gendercide, poverty and other abuses of women in China. Next week we turn our attention to Assisted Suicide and will be hearing Peter D. Williams, Chief Executive of Right to Life, on the question of ‘What happens next after the defeat of the Marris Bill?’ Do join us on Tuesday 22^nd November at 7pm in Harris Manchester for what promises to be a fascinating look at the future ahead.

Danielle Green is in her Second Year at St John’s studying French and Philosophy.