The Bioethics of Charlie Gard



July 26, 2017

By center director Sullivan, along with guest blogger Keegan D’Alfonso

What can we say about poor little Charlie Gard? This 11-month-old infant in the U.K. suffers from a rare and incurable disease called mitochondrial depletion syndrome, leaving him unconscious, on life support, and with almost no prospects for survival. Until just a few days ago, his parents wanted to continue treating him, even consulting with a specialist in the U.S. The hospital and the government have refused to release the child, claiming it is not in his best interests to continue aggressive therapy.

Though the parents have now given up on the court case, the public debate has been intense and polarizing. Here are a few excerpts – note the widely divergent opinions expressed:

A professor at University College of London:

[C]hildren do not belong to their parents. . . Parents cannot always be the ultimate arbiters of their children’s interests. [source]


From Russel Moore: “The European courts’ abuse of their power by usurping the authority of Charlie’s parents regarding his care is shocking to the conscience.” [source]


From the Telegraph (U.K.): “A civilised society doesn’t let parents do what they like with their children – however much they love them.” [source]


Americans United for Life: “Vulnerable people – the sick, the elderly, the infirm – deserve life-saving treatment – not a death sentence.” [source]


A prominent physician-ethicist, in the Journal of the American Medical Association: “[We must maintain] a commitment to upholding the integrity of medical practice by refusing to provide treatments that fail to meet a reasonable threshold of scientific justification.” [source]

 

Finally, we conclude with lawyer Wesley Smith, writing in the journal First Things:

The refusal to allow Charlie’s parents to remove their baby boy from the hospital is an act of bioethical aggression that will extend futile-care controversies, creating a duty to die at the time and place of doctors’ choosing. And that raises a crucial liberty question: Whose baby is Charlie Gard? His parents’? Or are sick babies—and others facing futile-care impositions—ultimately owned by the hospital and the state?

 

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