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Approaches to parental demand for non-established medical treatment: reflections on the Charlie Gard case
  1. John J Paris1,
  2. Brian M Cummings2,
  3. Michael P Moreland3,
  4. Jason N Batten4
  1. 1Department of Theology, Boston College, Chestnut Hill, Massachusetts, USA
  2. 2Department of Pediatrics, Massachusetts General Hospital, Boston, Massachusetts, USA
  3. 3Department of Law, Law School, Villanova University, Villanova, Pennsylvania, USA
  4. 4Stanford Center for Bioethics, Stanford University School of Medicine, Stanford, California, USA
  1. Correspondence to Professor John J Paris, Boston College, ChestnutHill, MA 02467, USA; john.paris{at}bc.edu

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Abstract

The opinion of Mr. Justice Francis of the English High Court which denied the parents of Charlie Gard, who had been born with an extremely rare mutation of a genetic disease, the right to take their child to the United States for a proposed experimental treatment occasioned world wide attention including that of the Pope, President Trump, and the US Congress.  

The case raise anew a debate as old as the foundation of Western medicine on who should decide and on what standard when there is a conflict between a family and the treating physicians over a possible treatment.  This paper will explore the different approaches of the British and American courts on the issue and the various proposals from that of John Rawls in his  A Theory of Justice  to a processed-based approach for resolving such disputes.

Introduction

As carefully crafted as the opinion of Mr Justice Nicholas Francis in the Gard case proved to be, it left commentators unsatisfied. A widespread criticism, captured in an article by Michael Dougherty in The National Review was for the state to ‘get out of the way of the parents trying to act in the best interests of the child’.1 Although he conceded the parents could be adding to the suffering of the child by taking Charlie to America for an experimental therapy and agreed that such a choice ‘may be the wrong decision,’ in Dougherty’s view, it should still be ‘their decision’.

Dougherty’s stand was the popular response to the question of ‘Who should decide?’ It fails, however, to propose any rationale for the decision. It provided no norms, no standards and no guidelines for the parents. Their motive could equally well be indifference to the suffering of the child as concern for his well-being. Furthermore, even good, loving parents may …

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