It is not widely known that British law allows for the abortion of children with disabilities right up until birth. Yet in 2015, 3,213 abortions were carried out on the grounds there was a “substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped.” Abortions carried out on children with disabilities represent 2% of the total number of abortions carried out in the UK last year. This means that fetal disability is far from being the most common justification for termination of pregnancy, as is sometimes thought, but it does not mean that it is a trivial issue.
We cannot afford to be complacent. Abortion for disability seems a small proportion of the total only because the number of abortions is so very high. Those three thousand unborn children with disabilities are not merely statistics – they are unique human individuals whose only opportunity to live has been denied. As one academic has written, “each life is not an abstraction, it is a personal reality, one that exists only for one particular unborn human who will no longer be if abortion is chosen” (Harold O.J. Brown, The Victory of the Abstract Over The Real, Human Life Review, Spring 2006).
So what kind of conditions are being targeted? In 2015, 689 abortions were carried out on children with Down’s syndrome, a chromosomal disorder. A further 247 unborn children were aborted because of “cardiovascular anomalies”, that is heart problems, as well as 159 suffering from spina bifida, and even 12 for cystic fibrosis. Other abortions for disability are carried out because of genetic disorders or bodily deformities; for example, 11 abortions were carried out because the child had cleft lip or cleft palate. One of the most important things to note is that most of these conditions are not life-threatening.
Life believes that each and every human individual has special value, simply because they are human. The right to life is quite literally the foundation of all other rights. We believe that abortion is always wrong – regardless of the unborn child’s physical health – but that abortion for disability raises some particularly pressing issues to do with equality, diversity and discrimination. As the Disability Rights Commission noted some years ago, allowing abortion up to birth for disability “is offensive to many people…it reinforces negative stereotypes of disability” .
The principle that people should not be discriminated against unfairly is held dear by many in our society and has been enshrined in law in various ways over the last few decades. The womb is one of the few places where people with disabilities are yet to achieve equality (one of the others, of course, is the IVF laboratory, where embryos that carry certain medical conditions are routinely discarded or destroyed).
At Life we understand that caring for children with disabilities can be hugely challenging to the families, bringing unique joys and difficulties to every family differently. However, it will undoubtedly always require unbounded amounts of time, energy and care from those families who have children with disabilities. Where we disagree with many people is that we cannot see abortion as a truly compassionate response to the toil involved in bringing up children with disabilities. We propose a different model for how to care for these children, even those who are severely or terminally ill.
Zoe’s Place: the “positive alternative” in action
Life’s daughter charity the Zoe’s Place Trust runs three children’s hospices in the UK . Here we look after seriously ill children aged 0-5 years, also providing support to their families and respite care. Zoe’s is a happy place – although the children are terminally ill, they are offered care and love and their dignity is recognised. Many of the Zoe’s babies suffer from the kind of conditions for which other children are aborted.
What about children who are diagnosed with a really terrible or painful illness in the womb?
This is a difficult area, which really straddles the two separate but related moral problems of abortion and euthanasia. The issue of children in terrible pain is not an easy one, although the uncertainty factor is a key point. It is a very momentous decision indeed – and, we would argue, unethical – to end a child’s life prematurely on the basis that the child’s life may or may not be short and painful.
There are, of course, many conditions where a short, painful life is for all intents and purposes a certainty. So how do we respond to those cases?
The short answer is found in the name of the country’s leading anti-assisted suicide campaign group: Care Not Killing. This may sound glib, but it sums up very neatly a well-developed and venerable tradition in medicine that refuses to consider the intentional ending of life as a treatment option. We do not think that human life must always be sustained in every situation at any cost. What we do argue is that doctors should never intentionally end the life of individual babies. There will sometimes be cases where doctors decide in good faith that it is time to stop a treatment that has become futile and disproportionate and to allow a child to pass away naturally, but there is a crucial difference between this and taking active steps to actually end a child’s life. It is also worth noting that British palliative care is among the best in the world and that only a tiny number of patients will have pain that cannot be effectively managed.
We would also hope for the caring imperative to stimulate the development of new methods of pain relief, new ways of making patients comfortable rather than simply ending lives. The evidence from jurisdictions that have legalised assisted suicide is that such legislation ultimately has a deleterious effect on the provision of palliative care and the development of pain relief.
The great danger as Life sees it is if abortion – or post-natal infanticide – of a child with a disability is allowed to become a treatment option; that we start to decide that it can be in someone’s interest to be killed. The debate about neonatal euthanasia and the abortion of children with severe disabilities is to a very large extent a debate about the kind of culture in which we want to live and the kind of medical culture in which we want doctors to operate. However compelling the case for ending the life of a child with severe disabilities, or a life limiting condition (a child with anencephaly for example, with an underdeveloped brain stem) there is a very important principle at stake; that we may not intentionally kill. This is not a cost-free policy; some individuals will inevitably suffer. Whatever the law, there will always be hard cases – situations where individuals end up suffering. No-one of course would wish to inflict suffering or to perpetuate suffering unnecessarily. But sometimes we just have to accept that we cannot respond to suffering by killing the sufferer. The medical imperative must always be to heal, to comfort, and to care for the living.
We have to decide is what principles are going to be most useful in protecting individual dignity and the common good. There is an old saying – something of a cliché by now, but no less true for being so – that hard cases make bad law.
These very hard cases are, as it were, the foot in the door for those who wish to comprehensively overturn respect for life. Remember that very few of those who argue for abortion using the disability hard case actually want to limit abortion to those cases.
“You wouldn’t treat an animal like that” is a powerful and thought-provoking challenge. We would point out that a human being is not just an animal. The nature of a human being includes purpose and abilities above and beyond that of animals. It is worth considering exactly why we put animals down. We have to be very careful that we are not taking a decision because of our reluctance to see someone suffer. It can be extremely traumatic watching someone who may be in great pain or discomfort, especially if they are a close friend or family member. We must be very careful about why we are taking a certain course of action. Is it really for the patient’s benefit, or for ours; to end their suffering, or to end our own?
Are the abortion for disability statistics accurate?
Recent studies and reports have given reason to think that the Department of Health statistics concerning abortion for disability may not be providing an accurate picture.
In 2012, an article in the British Journal of Obstetrics and Gynaecology by Draper et al. compared DoH figures with those indicated by the Epicure Preterm Cohort Study and found “substantial under-reporting” of late abortion in the official statistics .
This possibility seems to be supported by data from Eurocat, an organisation that monitors congential abnormalities in infant across Europe. While it is true that Eurocat themselves rebutted the idea of a discrepancy, their response did not resolve many of the lingering questions.
Other analyses, e.g. by Dr Peter Saunders, a commentator and writer on medical ethics, have found similar problems.
All of these concerns must be seen in the context of continuing doubts about the rigour and integrity of the abortion certification process. A report in summer 2012 by the Care Quality Commission revealed serious problems with the completion of HSA1 forms .