The tragic case of Charlie Gard

Published 3:00 am Thursday, July 27, 2017

Charlie Gard is an eleven-month old British boy with an extremely rare degenerative condition.  His parents wanted to bring him to the U.S. for an unproven treatment against his doctors’ wishes.  Charlie’s story has garnered attention on both sides of the Atlantic and highlights the importance of decision rights in our lives.

First a few details on the case.  Charlie was healthy when born last August, but was diagnosed with mitochondrial DNA depletion syndrome at eight weeks.  The syndrome causes muscle degeneration, brain damage, and is terminal with no cure.  Charlie has been hospitalized and on life support.  This is the 16th diagnosed case of this syndrome worldwide.

Last January, parents Chris Gard and Connie Yates found doctors in the U.S. willing to try an experimental gene therapy treatment.  Britain’s National Health Service would not pay for the unproven treatment.  So Charlie’s parents raised 1.4 million pounds in a campaign on the crowdfunding website Go Fund Me.

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Only Charlie’s doctors opposed the trip and treatment, and sought permission to disconnect his life support.  In April, a British court ruled that his parents could not bring Charlie to the U.S.  Appeals went quickly all the way to Britain’s Supreme Court, where the lower court’s ruling was upheld.  The European Court of Human Rights dismissed an appeal at the end of June.  Charlie’s parents have given up the legal fight to bring Charlie to the U.S. and are now trying to get permission to take him home for his final days.

A number of conservative and libertarian commentators have argued that this case illustrates the cruelty of government-run health care.  While I oppose government health care, no insurance system, private or public, can pay for every unproven treatment for every terminally ill patient.  Besides, Charlie’s parents raised money for the treatment.

Many have called the doctors, who have been receiving death threats, evil and heartless.  I strongly doubt that Charlie’s doctors at Great Ormond Street Hospital, Britain’s leading children’s hospital, are heartless.  Doctors specializing in pediatric medicine care deeply for children.  I’m sure that Charlie’s case has proven heart-breaking for his doctors.

The doctors’ position has been that the treatment cannot improve Charlie’s condition because he has brain damage.  An American doctor testified in a court hearing that the experimental treatment offered a ten percent chance of success, and even then only “clinically meaningful success.”  Charlie would have to endure both the travel and treatment, and his doctors believe that he is in pain.  I believe the sincerity of their statement that turning off life support would be kinder to Charlie.

Both positions are reasonable, just diametrically opposed.  What the case highlights is the significance of who gets to make the decisions in our lives, or decision rights.  Freedom is the right to make decisions about our own lives.

Of course, Charlie Gard cannot make this decision.  The natural extension of personal freedom is for parents to make decisions for their children.  Parental rights are not absolute and come with duties.  Parents who fail in their duties should relinquish their rights.  No court has doubted whether Chris Gard and Connie Yates have acted in what they believe is Charlie’s best interest.  The law in Britain simply gives doctors authority to make decisions about children’s medical care which parents in the U.S. get to make.

Life is about decisions, which is why some economists use the term decision rights instead of property rights.  The owner of a car, for example, gets to make decisions about the car’s use.  Ownership of ourselves means that we get to make decisions about what happens in our lives.  The money raised on Go Fund Me will not help Charlie’s parents if they do not get to decide to use it for the treatment.

I do not see any villains in the Charlie Gard story, only an allocation of decision rights inconsistent with personal freedom.  I only wish there were a better option for Charlie.  Unfortunately, no website can crowd fund miracles.

Daniel Sutter is the Charles G. Koch Professor of Economics with the Manuel H. Johnson Center for Political Economy at Troy University and host of Econversations on TrojanVision.  The opinions expressed in this column are the author’s and do not necessarily reflect the views of Troy University.

About Dan Sutter

I am the Charles G. Koch Professor of Economics with the Manuel H. Johnson Center for Political Economy at Troy University.

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