The infant Charlie Gard, who suffered from a very rare congenital disorder, died six days short of his first birthday—after his parents fought, and lost, a legal battle to convince British courts to allow them to take him abroad for medical treatment. Charles C. Camosy analyzes the case:
What made the Charlie Gard case different [from other cases involving the terminally ill] is that the UK medical team, hospital, and courts insisted that he be taken off his ventilator—despite the ethical judgment of his parents, and despite the willingness of medical teams in the U.S. and Rome to provide an experimental treatment. . . .
But in the UK it was determined that the treatment should not be attempted. Indeed, it was judged that Charlie’s parents should be prevented by law from transferring him to a medical team that thought the treatment worth attempting. Implicit in this judgment is the view that the harm that would have been done to Charlie by his parents was so obvious and of such magnitude that the decision had to be taken out of their hands. . . .
[T]he judgment of Charlie’s physicians, his hospital, and the court was focused primarily on Charlie’s mental disability. That is, it was focused on whether his “brain function” could be “improved.” The judge in Charlie’s case justified his ruling by saying that “Charlie’s parents accept that his present quality of life is one that is not worth sustaining.” One of Charlie’s physicians said, “It could be argued that Charlie would derive no benefit from continued life.” . . .
How we come to view Charlie Gard’s case has direct import for how we will view the direct killing of infants, an ancient and barbaric practice that has been reintroduced in the Netherlands in deceptively civilized guise as the “Groningen protocol.” This protocol allows the killing of infants of less than one year of age; the victims are very often disabled. . . .
In highlighting the dramatic stakes, however, the last thing we should do is ignore how personal such issues are for many people. . . . It was the ethical judgments of Charlie’s physicians that kept Charlie from getting treatment when there was a reasonable chance it could benefit him. Charlie does not belong to his physicians. He belongs to his parents. And they to him.