Writing in the Journal of Medical Ethics today, editors Julian Savulescu and Dominic Wilkinson discuss some of key factual and ethical questions arising from the Charlie Gard case - and outline some of the potential lessons.
These include the rights of parents in decision-making for children, access to experimental treatment where patients have no other options, and the need for a fair and impartial way of resolving disputes.
They identify factual questions, such as what was Charlie’s level of awareness/cognition and how long could he live with continued life-sustaining treatment?
And they address ethical questions, such as whether life for Charlie in his impaired state would be a life worth living? Should parents be permitted to consent to untested or extremely uncertain experimental treatment if a child would certainly die without it? Should decisions be made through the courts, or in some extra-judicial process?
“The important 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,” they write.
“Ethics is not about personal opinion - but about argument, reasons, and rational reflection,” they add. “While the lasting ramifications of the case for medical treatment decisions in children are yet to become apparent, we here outline some of the potential lessons.”
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