Oxford Students for Life

Promoting a culture of life in the University and beyond

Tag: Disability

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.

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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?

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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.  

Event Preview: Philippa Taylor on Abortion and Disability

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On Monday night, we’ll be joining Philippa Taylor, head of public policy at the CMF, for a talk on ‘Should foetal disability be a ground for abortion?’. So, why is this a pertinent topic for discussion, and why should you come along?

Ground D of the 1967 Abortion Act, as amended by the Human Fertilisation and Embryology Act 1990, allows abortion up to birth in circumstances where it is discovered ‘that there is a substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped.’ In almost all other circumstances, abortion is legal up to 24 weeks’ gestation. The question is, is this discrimination against the disabled, if indeed discrimination before birth is such a thing?

Statistics for 2013  show that 2,732 abortions were carried out because of foetal abnormality – 22% because Down’s Syndrome was detected. We’ve discussed the sadness of this fact before. Despite the wording of the law determining that the signs would need to point to the child being ‘seriously handicapped’, there have been claims that abortions have been carried out for such things as cleft lip and club foot – things which routine surgery can easily treat. But then, there are cases of much more serious disability where the child might not survive birth, or the child will live a life that is fraught with suffering. We must address the very acute problems and pains that such diagnoses can cause.

These are all very sensitive issues whose impact touches, or indeed overwhelms the lives of many. My Grandma was paralysed from the waist down for 10 years. My best friend’s dad was born with one arm. The boy I looked after on my year abroad had Down’s Syndrome. As individuals, we all know people with disabilities and we all know that some are lived with in relative ease whilst others render life unbelievably challenging. As a society, we are becoming much more aware of the lives of people with disabilities and the obstacles that they and their families face, as dramas such as BBC’s ‘Don’t Take My Baby’ help demonstrate. We too need to become more aware of whether the current abortion law is in line with the changing ways we are looking at disability or if it flies in the face of such progress.

Email us at studentsforlife.oxford@gmail.com to reserve a place for Monday’s talk – details here

Jo Jackson is co-President of Oxford Students for Life

Assisted suicide would change the way we respond to despair

Nathan Verhelst, a trans man from Belgium, had struggled with mental illness since childhood. At the age of 44, after a series of crises, he took his own life. Sadly, that is not so uncommon. What was unusual were the circumstances. Verhelst received a lethal injection from a doctor, as part of Belgium’s standard bureaucratic procedure for those in ‘unbearable suffering’. The doctor explained that Verhelst’s suffering qualified as unbearable because after six months of counselling he was still suicidal. If that kind of reasoning makes you uncomfortable – if you wonder whether six months of counselling amounts to everything that might have helped Nathan Verhelst – then look away now, because it could be coming to the UK.

 
If Rob Marris’s assisted suicide bill is passed on 11 September, and survives the rest of its progress through Parliament, this country will become more dangerous for the elderly, the ill, the disabled and the depressed. So say the British Medical Association, Disability Rights UK, and the Royal College of GPs. At the very least, the principle of caution should warn against this bill.

Everyone can feel the pull of the case for assisted suicide. Many people are in physical and psychological pain; they say, repeatedly, that they would rather be dead than alive. Who could possibly be indifferent to their distress, and their hope that it might end?

 
We experience a stab of guilt, hearing their stories. And guilt is not the worst motive. If it prompts us to help the people at the margins of our own community, or prompts government to improve palliative care, guilt can do a lot of good. But it is a poor basis on which to pass a law which will change the fabric of society. This law will not simply abolish a category of suffering: it will create new ones. The evidence everywhere suggests that the main result of assisted suicide laws is to surround unhappy, lonely people with exit signs.
In Oregon, the supposed paragon of such a law, the chief effect has not been on those in physical pain. Less than a quarter of those receiving poison say they are worried about pain, or even the possibility of pain; the main reasons are ‘loss of autonomy’ (91%) and ‘decreasing ability to participate in activities that made life enjoyable’ (89%). According to a high estimate, over 30% of recipients in a single year may have had their judgment impaired by undiagnosed depression.

Still, to give Oregon its due, there is a fundamental difference from Britain. Oregon Right to Die, the body behind the law, were from the beginning moderates. Their intention, according to one of their leading figures, Eli Stutsman, was to ‘campaign for the right to die and against Dr. Jack Kevorkian in the same breath’. They were, if you like, doves rather than hawks.

The British right-to-die movement is different. It is a flock of hawks with some official doves fluttering around in the vanguard. The doves assure us that this Bill will go no further than Oregon’s restrictions: it will apply only to the terminally ill. (An elastic category in any case, as the disabilities campaigner Baroness Campbell has pointed out.) But the hawks are more articulate and more consistent in applying the logic of total self-determination. Baroness Warnock, a leading intellectual light of the movement, predicts a future in which ‘you’d be licensing people to put others down’. Polly Toynbee, one of Fleet Street’s most influential voices for a change in the law (and for further changes down the line), concedes the possibility ‘that the frail will be intimidated into hastening the end of their lives so as not to be a burden on their children’. She comments, in a disturbing foretaste of things to come: ‘Well, why not?’ The Economist recently proposed that the opportunity for taking poison be extended to people with depression. Well, in Belgium they are already living the dream. Euthanasia is up 25% on last year, and the law becomes ever less discriminating in its effects.

There, as Rachel Aviv reported in a must-read article for the New Yorker, euthanasia has taken away people with ‘autism, anorexia, borderline personality disorder, chronic-fatigue syndrome, partial paralysis, blindness coupled with deafness, and manic depression’. This is scarcely the picture painted by the likes of Dignity in Dying.

In 1931, the great psychologist Carl Jung noted that many of his patients suffered from ‘the senselessness and aimlessness of their lives… I should not object if this were called the general neurosis of our age’. If anything, that diagnosis is truer today. Suicide is the biggest killer of young British men, and the UK is incubating a crisis of loneliness and mental illness. Usually, we try to build hope and solidarity against despair. But Belgium has discovered an alternative. “If the patient’s energy is gone,” one euthanasia doctor tells Aviv, “then it is not humane to say, ‘Well, maybe if you go to a hospital that specializes in your problem for two more years it will help.’ I think we have to respect when people say, ‘No – that is enough.’” Sorry, doctor, but running out of energy is a symptom of depression: a lot of people feel that they have ‘had enough’, are useless, and would be better off dead. It makes all the difference whether they are listened to and given support to carry on. In some places, that seems to be going out of fashion.

The testimony of doctors suggests that when suicide becomes institutionalised, a society becomes anaesthetised to the preciousness of human life. One Dutch doctor recalled the first time he administered euthanasia. The first case was ‘terrible’, he said. His team agonised all day before carrying it out. The next one, he said, was much easier. ‘The third case’, he concluded, ‘was a piece of cake’. That is a report from the bottom of the slippery slope, and it turns out to be quite a short slope. Assisted suicide will weaken the bonds of society. It will nudge towards the edge exactly the people we should be hauling back from it. One day we might be asked if anybody tried to stop it.

 
To write to your MP, go to http://notoassistedsuicide.org.uk/

Dan Hitchens is a former President of Oxford Students for Life.

Abortion and disability: the case for social justice

Guest blogger: Ruth Akinradewo is a second-year undergraduate studying French and Italian at the University of Oxford. She blogs at The Change Channel.

As a Christian who values the gift of life, the idea of not being opposed to abortion has never been an option for me. Still, of late having had my attention drawn to the distressing repercussions that the legalisation of abortion has had on disabled people, I now find myself faced with an even greater pile of evidence to show the extent of severe harm that termination can bring.

Opposition to abortion is typically, and rightly, focused on the taking away of an innocent life; the notable harm incurred on the mother and others; the paradox of having such a high rate of abortions when there are so many childless couples tenderly awaiting the joy of parenting . . . But few people tend to talk about the fact that terminations provide ammunition for the myth that disabled people are less valuable than the rest of society.

I didn’t know it myself until very recently: current UK law permits the abortion of foetuses deemed to have physical handicaps up to 40 weeks. Medical professionals agree that at 37 weeks the foetus is full-term; moreover, general legislation on abortion in this country caps the cut-off period for termination at 24 weeks. But if the baby doctor looks at a scan of you in your mother’s womb and decides you’re disabled, he and your parents are permitted by law to cut your life short even after you’ve fully developed and possess the necessary characteristics to live and breathe the air of the outside world.

In 2011, 144 abortions were carried out in England and Wales after 24 weeks.

That is scary.

What is more, doctors can be wrong: at last term’s OSFL Pro-Life Feminism panel discussion, Emily Watson spoke of how her mum had been told her brother would be born with Down’s Syndrome and no such thing happened.

The UK Parliamentary Inquiry into Abortion on the Grounds of Disability, which took place in 2013, rightly compared the aims of the 2010 Equality Act, which promises to prohibit discrimination based on disability, with the Abortion Act, which prevents individuals from being guilty of an abortion offence if ‘there is a substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped.’

Is it just me or do these two acts of legislation contradict each other?

Shielded by UK law, 2,732 abortions were carried out in 2013 under ground E of the Abortion Act. “Congenital malformations” and “chromosomal abnormalities” were often cited as the reason for implementing the termination. “Down’s syndrome (22% of all such cases) was the most commonly reported chromosomal abnormality.”

I was moved to tears when at the same panel discussion I mentioned earlier, Isabel Errington detailed how one of her friends had defied the doctors and had chosen to carry her disabled baby to term, leaving her only a matter of days to spend in life with him. Despite the brevity of the precious time they spent together, this mother spoke with tenderness of cherishing the gift of a son that she had been given.

The claim that killing off disabled babies is the best course of action for the child (think Richard Dawkins) is not only extremely offensive, it is extremely presumptuous. Who can say before they have given a child the chance to live that their lives will not be worth living?

Try telling that to Nick Vujicic, who, despite being born with neither arms nor legs, obtained a bachelor’s degree, is now an internationally-famous motivational speaker, and a husband and father.

If someone in Nick’s situation can achieve so much despite being “seriously handicapped”, as UK law puts it, then how much more those born with cleft lips and palate, who – yes, it is true – are being aborted under Ground E legislation each year?

With the mind of someone who cares deeply about social justice, I cannot sit still in the face of such injustices. I am inspired by friends and family who suffer or have suffered with disabilities and still rise up each day with fresh vigour to live their lives without being held back.

I cannot bear to see the experiences of people such as these being forgotten or ignored by those that believe they’d be better off dead. Baroness Grey-Thompson, speaking in a talk hosted by OSFL, highlighted that the discrimination that disabled people face shows no signs of abating and I am convinced it is precisely the position assumed by laws such as Ground E of the Abortion Act, that are inhibiting progress and the social justice that the disabled deserve to be a part of.