The court case between Charlie Gard’s parents and his Great Ormond Street Hospital medical team attracted international media attention, public protest, and comments from the Pope and US President Trump. Charlie was born with a rare genetic disease, for which there is currently no cure. Charlie’s parents found and crowdfunded for experimental treatment in the US. But his Great Ormond Street doctors argued that his condition had reached a point where such treatment was futile and not in Charlie’s best interests. The case was concluded in July during its second High Court appearance, and Charlie died on July 28, 2017 following withdrawal of treatment.
At the heart of the disagreement were differing judgements not about medicine, but about medical ethics. The treating UK Doctors, and the US Doctor, Prof Hirano, both agreed that Charlie was unlikely to benefit from Hirano’s treatment. But they differed on whether the uncertain treatment would be in Charlie’s best interests, and whether Charlie’s parents’ wishes should be respected.
What chance of life is worth taking? How much suffering should be imposed on the patient for that chance? How should we act when there is uncertainty about medical facts such as chances of success or the level of suffering? Should the expected level of ongoing disability if the treatment is successful play a part in such decisions? How much weight should be given to the wishes of parents? What is the appropriate normative threshold for overruling parents’ wishes. Then there are questions about the process itself. How should disputes about treatment be resolved? Is there a better way to make such decisions? Some further questions raised are listed in ‘Hard Lessons: Learning from the Charlie Gard Case‘
Submissions engaging with ethical questions raised by the Charlie Gard case (including, but not limited to those listed above) and their implications for future disputes are invited for publication in this special issue. Submitted papers should be up to 3500 words and should be submitted before the deadline of 20th December. Please select the Special Issue “Medical Ethics Following Charlie Gard” when you make the submission.