Ethical implications of medical crowdfunding: the case of Charlie Gard

@article{Dressler2018EthicalIO,
  title={Ethical implications of medical crowdfunding: the case of Charlie Gard},
  author={Gabrielle Dressler and Sarah A Kelly},
  journal={Journal of Medical Ethics},
  year={2018},
  volume={44},
  pages={453 - 457}
}
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… 
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References

SHOWING 1-10 OF 25 REFERENCES
Crowdfunding FOR MEDICAL CARE: Ethical Issues in an Emerging Health Care Funding Practice.
  • Jeremy Snyder
  • Medicine, Political Science
    The Hastings Center report
  • 2016
TLDR
It is argued that medical crowdfunding is a symptom and cause of, rather than a solution to, health system injustices and that policy-makers should work to address the injustices motivating the use of crowdfunding sites for essential medical services.
Appealing to the crowd: ethical justifications in Canadian medical crowdfunding campaigns
TLDR
Using 80 medical crowdfunding campaigns for Canadian recipients, this paper analyses how Canadians justify to others that they ought to contribute to funding their health needs and finds the justifications campaigners tend to fall into three themes: personal connections, depth of need and giving back.
The United Kingdom Sets Limits on Experimental Treatments: The Case of Charlie Gard.
TLDR
Charlie Gard is an 11-month-old boy who suffers from a rare inherited mitochondrial disease called infantile onset encephalomyopathic mitochondrial DNA depletion syndrome, his condition has steadily deteriorated, and he is now dependent on life support and mechanical ventilation.
The Rise of Crowdfunding for Medical Care: Promises and Perils.
TLDR
Crowdfunding is a financing method characterized by pooling together a large number of smaller contributions to support a specific initiative, and many top-earning campaigns on crowdfunding sites are medical in nature.
Crowdfunding our health: Economic risks and benefits.
The Place of Crowdfunding in the Discovery of Scientific and Social Value of Medical Research
TLDR
It is speculated that crowdfunding may ameliorate, albeit limitedly, some recalcitrant failures of funding systems, such as the sponsorship of research on neglected diseases, and smooth funding adaptations for scientific transitions.
“Better everyone should know our business than we lose our house”: Costs and benefits of medical crowdfunding for support, privacy, and identity
TLDR
Findings suggest that crowdfunding is often a resource for both instrumental and emotional social support and point to new theoretical frameworks to describe how users navigate needs for both privacy and support online and the often positive consequences of that negotiation for identity.
...
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