Selgelid, M. J., McLean, A., Arinaminpathy, N. and Savulescu, J., (Eds.) (2011). 'Infectious Disease Ethics: Limiting Liberty in Contexts of Contagion', (Springer) www.springer.com/us/book/9789400705630
Wilkinson, D., Savulescu, J., Hope, T. and Hendrick, J., (2008), 'Medical Ethics and Law - The Core Curriculum', 2nd Edition, (Churchill Livingstone) www.elsevier.com/books/medical-ethics-and-law/wilkinson/978-0-443-10337-7
Journal Articles and Chapters
Brick, C., Kahane, G., Wilkinson, D., Caviola, L. and Savulescu, J., (2020), 'Worth living or worth dying? The views of the general public about allowing disabled children to die', Journal of Medical Ethics, Vol: 46(1) [PMC6984061]
Gyngell, C., Newson, A. J., Wilkinson, D., Stark, Z. and Savulescu, J., (2019), 'Rapid Challenges: Ethics and Genomic Neonatal Intensive Care', Pediatrics, Vol: 243(S1 (1 January)) [PMC6379057]
Wilkinson, D., Villanueva-Uy, M.E., Hayden, D., McTavish, J. and PSNbM Consensus Working Group, (2019), 'Decision-making around resuscitation of extremely preterm infants in the Philippines: A consensus guideline', Journal of Paediatrics and Child Health, Vol: 55(9): 1023-1028 [PMC6771675]
Savulescu, J. and Wilkinson, D., (2019), 'Consequentialism and the Law in Medicine'. in in T. C. de Campos, J. Herring and A. M. Phillips., (Eds.) Philosophical Foundations of Medical Law, (OUP) [NBK550265]
Wilkinson, D. and Savulescu, J., (2019), 'Current controversies and irresolvable disagreement: the case of Vincent Lambert and the role of ‘dissensus’', Journal of Medical Ethics, Vol: 45(10): 631-635 [PMC6855788]
Wilkinson, D., (2019), 'Withdrawal Aversion and the Equivalence Test', American Journal of Bioethics, Vol: 19(3): 21-28 [PMC6436546]
Wilkinson D., (2017) Medical Futility. The International Encyclopaedia of Ethics (Wiley) [PDF]
Wilkinson, D. and Savulescu, J., (Online 2018), 'Prioritisation and Parity. Which disabled newborn infants should be candidates for scarce life-saving treatment?'. in D. T. Wasserman and A. Cureton, (Eds.) Oxford Handbook of Philosophy and Disability. (Oxford University Press)
Wilkinson D, Petrou S, Savulescu J, Rationing potentially inappropriate treatment in newborn intensive care in developed countries. Seminars in Fetal and Neonatal Medicine 2017 forthcoming (commissioned review) [pre-print PDF]
Paris, J., Ahluwalia, J., Cummings, B., Moreland, M. and Wilkinson, D., (2017), 'The Charlie Gard Case: British and American Approaches to Court Resolution of Disputes over Medical Decisions', Journal of Perinatology, Vol: 37(21): 1268–1271 [open access]
Pugh, J., Pugh, C. and Savulescu, J., (2017), 'Exercise prescription and the doctors duty of non-maleficence', British Journal of Sports Medicine, Vol: 51(21): 1555-1556. [free]
Savulescu J. Is it in Charlie Gard’s best interest to die? Lancet 2017 389: 1868–9
Wilkinson D. Beyond resources: denying parental requests for futile treatment Lancet 2017 389: 1866-7
Wilkinson, D. and Nair, T., (2017), 'Settling for second best: when should doctors agree to parental demands for suboptimal medical treatment?', Journal of Medical Ethics, Vol: 43(12): 831-840.
Savulescu, J. and Schuklenk, U., (2017), 'Doctors Have No Right to Refuse Medical Assistance in Dying, Abortion or Contraception', Bioethics, Vol: 31(3): 162–170
Wilkinson, D., (2016), 'The grey zone in neonatal treatment decisions'. in R. McDougall, C. Delany and L. Gillam, (Eds.) When Doctors and Parents Disagree: Ethics, Paediatrics and the Zone of Parental Discretion. (Federation Press)
Wilkinson D, Truog R, Savulescu J. In favour of medical dissensus. Why we should agree to disagree about end of life decisions. Bioethics 2016 Feb;30(2):109-18. doi: 10.1111/bioe.12162
Les Halpin, Julian Savulescu, Kevin Talbot, Martin Turner and Paul Talman. Access to medicines: empowering patients in the quest to improve treatment for lethal diseases. Journal of Medical Ethics. 2015
Larcher V, Craig F, Bhogal K, Wilkinson D, Brierley J on behalf of the Royal College of Paediatrics and Child Health. Making decisions to limit treatment in life-limiting and life-threatening conditions in children: a framework for practice. Arch Dis Child 2015 100(Suppl 2):s1–s26. doi:10.1136/archdischild-2014-306666
McDougall RJ, Notini L Overriding parents’ medical decisions for their children: a systematic review of normative literature Journal of Medical Ethics 2014;40:448-452.
Wilkinson D. Death or Disability? The Carmentis machine and decisions for critically ill children. Oxford University Press 2013.
Savulescu, J., (2011), 'Should doctors feel more able to practise according to their personal values and beliefs? No.', Medical Journal of Australia, Vol: 196(1): 38.
Selgelid, M. J., McLean, A., Arinaminpathy, N. and Savulescu, J., (Eds.) (2011). 'Infectious Disease Ethics: Limiting Liberty in Contexts of Contagion', (Springer)
Wilkinson, D., Hayden, D. and Schnall, J., (2019), 'Newborns in crisis: an outline of neonatal ethical dilemmas in humanitarian medicine', Developing World Bioethics, Vol: 19(4): 196-205 [PMC6916396]
Wilkinson DJ, Savulescu J. Knowing when to stop: futility in the intensive care unit. Curr Op Anesthesiol 2011 doi: 10.1097/ACO.0b013e328343c5af
Savulescu, J. and Kahane, G. (2009). ‘Brain-Damage and the Moral Significance of Consciousness’. Journal of Medicine and Philosophy. 34(1): pp 6-26. doi:10.1093/jmp/jhn038
Wilkinson, D., Savulescu, J., Hope, T. and Hendrick, J., (2008), 'Medical Ethics and Law - The Core Curriculum', 2nd Edition, (Churchill Livingstone)
Wilkinson, D., Savulescu, J., Hope, T. and Hendrick, J., (2008), 'Medical Ethics and Law - The Core Curriculum', 2nd Edition, (Churchill Livingstone)
Thiagarajan, M., Savulescu, J., Skene, L. (2007). ‘Deciding about life support: A perspective on the ethical and legal framework in the United Kingdom and Australia’. Journal of Law and Medicine. 14: 583.
Savulescu J. (2002). ‘How do we choose which life to save? Equality of Access or a Fair Go?’. Current Paediatrics. 12(6):487-492 (December).
- Wilkinson, D., (2019), 'Is it right to use Nazi research if it can save lives?', Written by Frank Swain for BBC Future, this article extensively quotes Dominic Wilkinson (24 July 2019).
- Palacios-González, C., (2019), '¿Cuáles son los resguardos antes de tomar fotografías de los pacientes? (What are the safeguards before taking pictures of the patients?)', Medscape (7 June).
- Palacios-González, C., (2019), Dr Palacios-González's blog post 'A third MRT-baby is on its way' was picked up and cited in MIT Technology Review online article 'Another use of an egg-swapping IVF technique has just been reported in Europe', (22 January 2019).
- Brown, R., (2017), 'Interview on organ donation and consent', BBC 5 Live Phil Williams (18 October).
- Brown, R., (2017), 'Interview on organ donation and consent', BBC Wales Jason Mohammad show (19 October).
- Brown, R., (2017), 'Hundreds of families block organ donation', BBC (online article) (19 October).
- Brown, R., (2017), 'Organ Donation: Presumed Consent and Focusing on What Matters', Practical Ethics in the News Blog (25 September).
- Video interview related to The Charlie Gard Case (Dominic Wilkinson, Practical Ethics 14/7/17)
- Television related to The Charlie Gard Case (Julian Savulescu, ABC TV Australia 13/7/17)
- The Moral related to The Charlie Gard Case (Dominic Wilkinson, BBC radio, 12/7/17)
- Video interview related to The Charlie Gard Case (Julian Savulescu, Practical Ethics 10/7/17)
- Wilkinson, D., (2016), Interview on HFEA decision to approve 'three-person baby’ mitochondrial transfer in UK, Al Jazeera English news channel (15 December 2016).
- Wilkinson, D., (2015), 'Terminally ill teenager defies predictions but that doesn’t mean doctors were wrong', The Conversation (June).
- Savulescu, J., (2008), 'Abortion Bill's Rights 'Breach'', The Age (October 6).
- Sheehan, M., (2008), 'Doctors or Resource Allocators?', Contribution to Practical Ethics Blog (28 August).
- Wilkinson, D., (2008), 'Healthy case for letting doctors judge teens' best interests', The Age (November 15).
- Savulescu, J., (2007), 'Doctors must go beyond treating the sick, ethicist says', USA (27 August).
The case of Charlie Gard has reached its sad conclusion. However, it continues to attract intense public attention. It raises a number of challenging and important ethical questions.
The role of Practical Ethics in cases like this is to help clarify the key concepts, identify central ethical questions, separate them from questions of scientific fact and subject arguments to critical scrutiny. We have disagreed about the right course of action for Charlie Gard, but agree on the role of ethical analysis and the importance of robust and informed debate. Ethics is not about personal opinion – but about argument, reasons, and rational reflection.
We have collected together below some of the materials on the Charlie Gard case that we and others have written as well as some relevant resources from our earlier work. We will update this page as more material becomes available. (*Updated 4/8/17)
Legal material on the case
Summary of Case
Papers on the Charlie Gard Case
Relevant background material
- Wilkinson D. Futility. The International Encyclopaedia of ethics (forthcoming)
- Les Halpin, Julian Savulescu, Kevin Talbot, Martin Turner and Paul Talman. Access to medicines: empowering patients in the quest to improve treatment for lethal diseases. Journal of Medical Ethics. 2015
- Larcher V, Craig F, Bhogal K, Wilkinson D, Brierley J on behalf of the Royal College of Paediatrics and Child Health. Making decisions to limit treatment in life-limiting and life-threatening conditions in children: a framework for practice. Arch Dis Child 2015 100(Suppl 2):s1–s26. doi:10.1136/archdischild-2014-306666
- Wilkinson D, Truog R, Savulescu J. In favour of medical dissensus. Why we should agree to disagree about end of life decisions. Bioethics 2016 Feb;30(2):109-18. doi: 10.1111/bioe.12162
- McDougall RJ, Notini L Overriding parents’ medical decisions for their children: a systematic review of normative literature Journal of Medical Ethics 2014;40:448-452.
- Wilkinson D. Death or Disability? The Carmentis machine and decisions for critically ill children. Oxford University Press 2013.
- Wilkinson DJ, Savulescu J. Knowing when to stop: futility in the intensive care unit. Curr Op Anesthesiol 2011 doi: 10.1097/ACO.0b013e328343c5af
- Thiagarajan, M., Savulescu, J., Skene, L. (2007). ‘Deciding about life support: A perspective on the ethical and legal framework in the United Kingdom and Australia’. Journal of Law and Medicine. 14: 583.
- Savulescu J. (2002). ‘How do we choose which life to save? Equality of Access or a Fair Go?’. Current Paediatrics. 12(6):487-492 (December).
- Savulescu, J. and Kahane, G. (2009). ‘Brain-Damage and the Moral Significance of Consciousness’. Journal of Medicine and Philosophy. 34(1): pp 6-26. doi:10.1093/jmp/jhn038
Other ethics commentators
In the light of recent media attention, Professor Dominic Wilkinson, OUCs Director of Medical Ethics has gathered together some of the material relating to the ethics of this case
Previous blog posts:
Groundhog Day and Legal Appeals. (What if Alfie Were a Texan?)
Harm, Interests and Medical Treatment. Where the Supreme Court Got it Wrong…
Where There is Life, There is Not Always Hope. Ethics, Futility and the Alfie Evans Case
Medical treatment disputes and the international second opinion
BBC Website Factcheck article “Alfie Evans: When are parents denied the final say?”
The Independent “Alfie Evans: The significance of terminally ill boy being able to breathe on his own”
Wilkinson, D., (2018), 'What we can learn from the heartbreaking Alfie Evans case — and what we can’t', Interview Vox media (27 April).
Wilkinson, D., (2018), 'British toddler Alfie Evans not allowed to leave country, UK court says', Quoted in CNN online piece (26 April).
Wilkinson, D., (2018), 'How do medics reach decisions in cases like that of Alfie Evans?', Quoted in Express and Star (25 April).
Wilkinson, D., (2018), 'Fight Over Alfie Evans, a Brain-Damaged Baby, Divides U.K.', Interview in New York Times (26 April).
Wilkinson, D., (2018), 'Alfie Evans: No new treatments on offer despite offers of help abroad', Quoted in piece in The Times (25 April).
Below are responses to some of the questions commonly asked in relation to Alfie’s case
The doctors don’t know what is causing Alfie’s illness. Why do they want to stop life support?
The exact cause of Alfie’s condition is not known – there is no diagnosis, which can make it hard to know what the future holds. However, in Alfie’s case, the future, sadly, appears clear. Multiple medical specialists gave evidence in the case. Brain scans have shown severe deterioration over time. The judge in the original court hearing described scans showing that large areas of the brain have been “wiped out”. Alfie has been totally dependent on life support. He has profound neurological damage. There appears to be no prospect of recovery, and no specialists in this country, or overseas have identified any tests or treatment that have a real chance of making him better.
It is devastating news for any parent to hear that their child is gravely ill. It is especially difficult in situations when doctors cannot be sure of the exact cause of the child’s illness. However, sadly, despite all of our advances in genetics, it is still sometimes impossible to make an exact diagnosis in a seriously ill child.
Where there is life, there is hope? Shouldn’t Alfie’s parents be allowed to hold on to hope?
It is very understandable for parents to want to hold on to hope, to exhaust every possibility that might make their child better. However, sometimes the sad fact is that medicine cannot cure, or improve a child’s condition. Sometimes the only hope that remains is that a child’s suffering is not prolonged.
Overseas doctors have offered treatment for Alfie, why shouldn’t his parents be allowed to take him overseas?
In a previous blog post, I discussed some of the reasons why evidence from overseas experts sometimes is relevant, but sometimes is not relevant to cases of disputed treatment.
In another recent case, the judge noted “There is a world of difference between a foreign expert who may have relevant medical or scientific expertise … and whose evidence may … be necessary to resolve the proceedings justly, and a foreign expert who simply takes the view that the medical, moral or ethical approach to these issues in this jurisdiction differs from that in their own jurisdiction or their own practice, and that the approach in their jurisdiction or their own practice is preferable.”
In Alfie’s case, none of the foreign experts have offered any new treatment, or any new outlook for Alfie. The Italian specialists have apparently indicated that they believe that his care should be palliative.
However, some of the overseas experts appear to have different ethical views about how best to care for a child who is dying. They appear to believe that life should be prolonged at costs or that parents are always right when it comes to decisions about medical treatment for a child.
That is not the ethical framework that doctors and the courts use in this country. Medical treatment is often helpful for a child. Parents views are extremely important for decisions about treatment for children. However, sometimes the sad fact is that medicines or machines are not helping a child, and, in fact, are doing more harm than good. Sometimes the sad fact is that parents do not know what is best for their child. They are led by their grief and their sadness, their understandable desire to hold on to their child, to request treatment that will not and cannot help.
In that circumstance, it is wrong to continue to provide those treatments, and doctors and the courts in this country have felt that they should not be provided, even if parents would wish them to be.
Alfie is breathing by himself, does that mean doctors were wrong?
In the last few hours, news reports have indicated that life support has been withdrawn from Alfie, and that he is breathing by himself.
That does not mean that doctors were wrong, and it does not mean that breathing support should be restarted.
The reason for stopping the breathing machines is simply that his serious condition is not treatable, and will not improve. He has deteriorated over the many months that he has been on life support. The breathing tubes and machinery used to keep Alfie alive can cause discomfort and even pain to children. Given the nature of Alfie’s condition, the doctors have wanted to provide him with palliative care, focused on his comfort, and focused on making his remaining time as good as possible.
Whenever I provide palliative care to children, I talk to families about uncertainty. When we stop breathing support for a child, sometimes the child will slip away very quickly. Sometimes, they will be with us for minutes or hours, or even days. Sometimes, when the breathing machine is removed, it becomes clear that actually the child didn’t need the machine, and they remain with us for much longer. When that happens, it is not something to fear, or to regret, but an opportunity to embrace – to spend more time with a child, without the machinery, wires and medical interventions in the way.
Providing palliative care is not euthanasia. It is about providing “intensive caring” rather than intensive medical care. It does not end the child’s life. Rather, it supports the child, and the child’s family, for as long or as short as they remain with us.
Updated 26 April 2018.
The Practical Ethics Video Series makes the most important and complex debates in practical ethics accessible to a wide audience through brief interviews with high profile philosophers in Oxford. Video interviews on this and other topics can be found on our YouTube channel.
Wilkinson, D., (2018), 'Sleep softly: Ethics, Schubert and the value of dying well'. An inter-disciplinary collaboration on music, mortality and ethics including a performance of Schubert’s String Quartet Number 14 (second movement). Jesus College, Oxford (23 May).
Paris, J., (2017), 'Murder or a Legitimate Medical Procedure: the Withdrawal of Artificial Nutrition & Fluids from a Patient in a Persistent Vegetative Condition'. St Cross Special Ethics Seminar. St Cross College, Oxford (18 May).
Medical Ethics Symposium: Rationing Responsibly in an Age of Austerity (20 June 2018)
Christian Munthe 'Rationing antibiotics in the face of drug resistance: ethical challenges, principles and pathways'
Dominic Wilkinson 'Allocating intensive care beds and balancing ethical values'
Rebecca Brown 'Moralising medicine – is it ethical to allocate treatment based on responsibility for illness?'
Thaddeus Mason Pope 'Allocating organs – the US approach'
Julian Savulescu 'Cost-equivalence – rethinking treatment allocation'