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Student essay
Ethical implications of medical crowdfunding: the case of Charlie Gard
  1. Gabrielle Dressler1,
  2. Sarah A Kelly1,2
  1. 1Center for Bioethics, Harvard Medical School, Boston, Massachusetts, USA
  2. 2College of Medicine and Veterinary Medicine, University of Edinburgh, Edinburgh, UK
  1. Correspondence to Gabrielle Dressler, Center for Bioethics, Harvard Medical School, Boston, MA 02115, USA; gabrielle_dressler{at}hms.harvard.edu

Abstract

Patients are increasingly turning to medical crowdfunding as a way to cover their healthcare costs. In the case of Charlie Gard, an infant born with encephalomyopathic mitochondrial DNA depletion syndrome, crowdfunding was used to finance experimental nucleoside therapy. Although this treatment was not provided in the end, we will argue that the success of the Gard family’s crowdfunding campaign reveals a number of potential ethical concerns. First, this case shows that crowdfunding can change the way in which communal healthcare resources are allocated. Second, within the UK’s National Health Service, healthcare is ostensibly not a market resource; thus, permitting crowdfunding introduces market norms that could commodify healthcare. Third, pressures inherent to receiving funds from external parties may threaten the ability of patients-cum-recipients to voluntarily consent to treatment. We conclude that while crowdfunding itself is not unethical, its use can have unforeseen consequences that may influence conceptions of healthcare and how it is delivered.

  • allocation of health care resources
  • decision-making
  • informed consent
  • ethics

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Footnotes

  • Contributors GD and SAK contributed equally to this paper. Each participated in project design and drafted and critically reviewed the manuscript. Both authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Patient consent Not required.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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