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Ethical implications of medical crowdfunding: the case of Charlie Gard
Gabrielle Dressler1, Sarah A Kelly1,2
1Center for Bioethics, Harvard Medical School, Boston, Massachusetts, USA.
Insights
Medical crowdfunding, exemplified by the Charlie Gard case, raises ethical concerns regarding healthcare resource allocation and the potential commodification of medical care. It may also impact patient consent due to external funding pressures.
Area of Science:
- Medical Ethics
- Healthcare Policy
- Bioethics
Background:
- Patients increasingly use medical crowdfunding to finance healthcare costs.
- The Charlie Gard case highlights the use of crowdfunding for experimental treatments.
- This raises ethical questions about resource allocation and healthcare commodification.
Purpose of the Study:
- To analyze the ethical implications of medical crowdfunding.
- To examine how crowdfunding impacts healthcare resource allocation.
- To assess the potential for crowdfunding to commodify healthcare and affect patient consent.
Main Methods:
- Case study analysis of the Charlie Gard crowdfunding campaign.
- Ethical argument concerning market norms in healthcare.
- Examination of patient autonomy and informed consent in the context of external funding.
Main Results:
- Crowdfunding can alter the allocation of communal healthcare resources.
- Permitting crowdfunding may introduce market norms, potentially commodifying healthcare.
- External funding pressures may compromise a patient's ability to voluntarily consent to treatment.
Conclusions:
- Medical crowdfunding is not inherently unethical.
- Its application can lead to unforeseen consequences in healthcare delivery and perception.
- Ethical considerations are crucial when integrating crowdfunding into healthcare systems.
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.
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