The Charlie Gard case threatens all parents

Would experimental medical treatment be in Charlie Gard’s best interests? Or should he be taken off of life support and allowed to die?

From a medical ethics perspective, both courses of action are permissible in principle. If Charlie were an adult and had made his wishes known, those wishes would be followed without controversy. An adult patient would never be barred from seeking further treatment ( no matter how small or uncertain the prospective benefit) from a doctor willing to provide it, especially if he had the money to pay for it himself.

This case, then, is not really about Charlie’s best interests. After all, reasonable people can disagree about what is best for Charlie. Rather, the real question at issue in this case is: Who has the right to decide his fate?

Should it be the Ormond Street Hospital doctors, who claim that nothing else can be done to treat Charlie’s rare mitochondrial disease? Should it be Michio Hirano of Columbia University, the doctor who planned to examine Charlie on Monday after testifying last week that the experimental therapy has an 11% to 56% chance of improving his condition? Should it be Justice Nicholas Francis of the British High Court, who ( at least so far) has agreed with the Ormond Street doctors that further treatment will not benefit Charlie, but rather will only prolong his suffering?

The answer is fairly obvious: It should be Charlie’s parents. They are the ones most directly responsible for him, most invested in his well- being and most profoundly affected by his fate. The primary authority of parents to make decisions on their children’s behalf is widely recognized as a matter of principle and explicitly articulated in law. The United State Supreme Court has recognized the rights of parents. The European Convention of Human Rights and the Universal Declaration of Human Rights likewise recognize the right to be free from arbitrary interference in private and family life.

The state could rightfully intervene on Charlie’s behalf if his parents were abusive or neglectful, but there is not even a question of that in this case. In prohibiting this treatment on the basis of its controversial judgment about Charlie’s best interests, the state is clearly trespassing into the realm of parental authority and family life.

The decisions of the British courts have been met with scathing criticism, largely out of sympathy for the plight of Charlie and his parents. Hopefully, Hirano’s testimony and personal examination of Charlie will persuade Justice Francis to change his mind.

Yet concern for Charlie and his parents is not the only reason for criticism. Everyone should be worried about the precedent this case sets with regard to the usurpation of parental authority and loss of family privacy. This fight is not only about Charlie’s fate but also about protecting the rights of all parents to order their family life and fulfill their child- rearing responsibilities, free from the constant supervision and intrusion of an overweening state.

Melissa Moschella is Assistant Professor of Medical Ethics at Columbia University and author of To Whom Do Children Belong? Parental Rights, Civic Education and Children’s Autonomy.