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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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Introduction

Crowdfunding has become a common method of financing expenses related to healthcare.1 Loosely defined as raising money for specific campaigns through websites dedicated solely to this purpose (eg, GoFundMe, Kickstarter and CrowdRise), the crowdfunding industry has grown rapidly in recent years. Between its founding in 2010 and 2014, GoFundMe campaigns raised over US$470 million, and as of 2016, the total raised on this platform exceeds US$2 billion annually.2 Health-focused campaigns represent GoFundMe’s largest category of fundraising for personal use, with an increasing number of individuals using crowdfunding to help pay for personal medical expenses.2 3

The case of Charlie Gard, an infant born in August 2016 with encephalomyopathic mitochondrial DNA depletion syndrome (MDDS), is perhaps the most famous example of medical crowdfunding in recent years. After treatment with experimental nucleoside therapy was not offered at Great Ormond Street Hospital (GOSH), the Gard family sought to transfer care to Dr Michio Hirano in the USA.4 In order to cover the costs of this treatment, they turned to crowdfunding: the Gard family’s GoFundMe page was immensely successful, receiving over £1.2 million in donations in 6 months.5 When their request to seek care in the USA was blocked by the High Court, Charlie’s parents—Connie Yates and Chris Gard—announced their intent to establish The Charlie Gard Foundation to fund research for mitochondrial disease using the money raised through their crowdfunding campaign.6 Although other campaigns have found similar success in the past, the number of donations to and total funds raised by Charlie’s campaign remain outside the norm of typical medical crowdfunding endeavours.2 7

The increasing popularity of medical crowdfunding has begun to draw attention for its widespread ethical implications. While the case of Charlie Gard is an uncommonly successful example, the extremity of his campaign highlights certain ethical issues that may go unnoticed in smaller cases. In what follows, we review the existing literature on the ethics of medical crowdfunding and use Charlie’s example to demonstrate how crowdfunding changes the allocation of healthcare resources. We then consider two further ethical implications of medical crowdfunding: how it leads to the commodification of healthcare and health, and whether pressures inherent to receiving funds from external parties may threaten the ability to voluntarily consent to treatment. Thus, 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.

Existing literature on medical crowdfunding

Several commentators have examined the ethics of medical crowdfunding. While full exploration of its benefits lies beyond the scope of this paper, the primary advantage of crowdfunding is that it allows individuals to raise money for otherwise inaccessible medical care and related expenses. A study of Canadian medical crowdfunding campaigns shows that they directly funded treatment, as well as accompanying expenditures like hospital parking fares, time off work, travel and other living expenses.8 Although there are no empirical data about the use of medical crowdfunding in the UK, one might imagine similar outcomes given that both countries have nationalised healthcare systems. Furthermore, crowdfunding can help publicise rare diseases and thereby galvanise efforts to address their unmet treatment needs.9 These platforms can also benefit contributors: they can donate easily and securely, and track the progress of campaigns.1 Despite the tangible benefits that medical crowdfunding offers to patients and families, it raises ethical issues that warrant analysis (table 1).

Table 1

Previously identified ethical issues in medical crowdfunding and their relevance to the Charlie Gard case

The Charlie Gard case highlights several ethical issues relevant to medical crowdfunding that have previously been identified in the literature. First, campaigns that include more information are generally more financially successful10; consequently, crowdfunding sites encourage extensive disclosure of personal and medical information in order to receive maximal donations.10 Resulting privacy concerns1 are particularly pertinent in paediatric care contexts, such as Charlie’s, where parents make the decision to disclose their child’s personal information (as they are legally entitled to do).

Second, oversight regarding the veracity of claims made by crowdfunding campaigns is limited. There have been several documented cases of fraudulent pages, which have raised thousands of pounds under the guise of seeking treatment for fictitious medical needs.1 However, the extent of this practice is almost impossible to know, particularly given that crowdfunding websites rarely monitor the use of donated funds or require any means of verification of individuals’ claims.1 Although the fundraising was not fraudulent in Charlie’s case, the funds raised were ultimately diverted to The Charlie Gard Foundation instead of funding nucleoside therapy as originally promised.6

Third, crowdfunding privileges particular groups of patients, perpetuating existing inequalities in access to healthcare. Evidence suggests that the most successful campaigns raise funds for patients with existing large social networks, and donations typically come from donors of the same socioeconomic class as the patient.10 These trends indicate that medical crowdfunding, which necessitates access to and dexterity with technology, generally privileges patients and families who are well connected and wealthy.10 Thus, distribution of resources through crowdfunding may be driven by external factors (such as perceived social value), rather than more traditional metrics like medical need.11 The high rate of donation to Charlie’s campaign was likely driven in part by international support from prominent figures like Pope Francis and President Trump.12

Finally, the use of medical crowdfunding might perpetuate inequitable or insufficient healthcare systems by reducing the impetus to reform infrastructures that fail to offer adequate access to healthcare.1 Even in systems of universal medical coverage like the National Health Service (NHS), certain treatments are not considered standard care and therefore are not provided. As far as we are aware, there are no empirical data that show what medical crowdfunding is used for in the UK. However, one might imagine that some individuals use crowdfunding to pay for care that is beyond the purview of the NHS and therefore must be funded privately. As was the case for Charlie Gard, certain innovative and experimental treatments may only be offered at international healthcare centres. Thus, the effects of medical crowdfunding on other healthcare systems remain pertinent for British patients who seek therapies not provided by the NHS. Because medical care can be sought beyond the confines of national borders, the effect of crowdfunding on health equity should be considered on an international scale.

The case of Charlie Gard

Charlie’s campaign is one of the most famous examples of medical crowdfunding in GoFundMe’s history, garnering extensive media coverage and a huge number of donations compared with typical crowdfunding campaigns. Limited quantitative data exist to describe typical campaigns, but a 2017 study of 200 randomly selected GoFundMe campaigns (seeking funding for all purposes, not only medical treatment) revealed an average of US$3033.96 raised from 35.62 donors.2 A 2016 study of 28 medical crowdfunding campaigns revealed an average of US$31 858 raised per campaign.7 By contrast, the Gard family’s crowdfunding page had received 84 384 distinct donations totalling £1 352 060 by the time of this writing.5 The success of this campaign cannot be separated from the significant and atypical international media attention it received, including support from Pope Francis and President Trump.12 When the treatment was ultimately not pursued, Charlie’s parents dedicated the crowdfunded money to establish The Charlie Gard Foundation to ‘help other children with mitochondrial diseases, and rare childhood illnesses’.6 Although the original aim of their GoFundMe page was ultimately unsatisfied, the extraordinary success of the Gard family’s campaign nonetheless renders it a notable example of medical crowdfunding that warrants deeper consideration. Its extremity draws attention to certain ethical issues that may go unnoticed in smaller cases.

Shifting the allocation of healthcare resources

As noted above, medical crowdfunding shifts how healthcare resources are allocated. However, further analysis of this issue is valuable in the context of the Charlie Gard case because its extreme nature demonstrates how certain groups benefit disproportionately from medical crowdfunding, the hidden impact that seemingly private care can have on public resources and the influence crowdfunding companies may have in controlling access to healthcare.

First, Charlie’s case illustrates how crowdfunding reprioritises communal resources in favour of individual compelling cases.2 13 Snyder et al suggest that medical crowdfunding pushes norms from ‘distribution according to medical need’ toward ‘distribution according to desert’,3 a highly subjective classification depending on gender, race, disease and social network size.11 This speaks to Jonsen’s ‘rule of rescue’, or the psychological disposition to help an identified person in immediate jeopardy if one feels there is any possibility to prevent harm.14 As per Jonsen’s rule, the atypical success of the Gard family’s campaign exemplifies how medical crowdfunding can promote emotionally appealing stories,1 capitalising on sensationalism and the empathic power of illness narratives. Intended to evoke sympathy, Charlie’s story portrays a sick, white, male baby in need of experimental therapy pitted against the medical establishment who proposed the withdrawal of care. His GoFundMe page attracted an unprecedented level of publicity, including support from high-profile public figures.12 Given the effects of herding—a behavioural economics trend describing how funders collectively make inferences and choices about projects based on the decisions of others—it follows that such prominent international endorsements would affect public perception of Charlie’s deservingness, dramatically increasing donations.12 13

Second, although it seems that medical crowdfunding has a financially neutral impact on healthcare systems—campaigns appear to pay for the care they demand—further consideration of Charlie’s case indicates that this is not necessarily true. The money raised via the Gard family’s GoFundMe page was intended to cover the upfront costs of the nucleoside therapy.5 However, as Truog has pointed out, not all the resources necessary for Charlie’s care would be provided by the crowdfunded money.15 Tertiary medical centres that are able to conduct research and provide treatments like nucleoside therapy actually depend on substantial societal investment in healthcare infrastructure over time. It is thus misleading to presume that medical crowdfunding fully compensates for the care it purports to fund; rather, it shifts the allocation of community-funded health resources towards individual crowdfunding recipients. Moreover, if Charlie had received nucleoside therapy, his subsequent medical care would likely have fallen under the purview of the NHS. Thus, while the treatment itself might be privately funded, it is important to recognise that there would also be significant costs to the public healthcare system.

Third, the companies that manage online crowdfunding platforms can also influence the success of different campaigns and thereby impact the distribution of healthcare resources. Following the campaign, GoFundMe donated £10 000 towards The Charlie Gard Foundation. Notably, this donation was made via GoFundMe’s own site, rather than waiting for the establishment of a separate fundraising platform.6 However, the profit GoFundMe made from the Charlie Gard campaign was significantly greater than £10 000, suggesting this contribution might be more of a public relations manoeuvre than a genuine desire to affect change or show support. Regardless, crowdfunding platforms such as GoFundMe demonstrate bias in their approaches to different campaigns, donating to some while denying fee waivers for other charitable appeals. For example, GoFundMe refused to waive their platform fee for a campaign to support victims of the Somali drought in 2017.16

The power afforded to GoFundMe and other crowdfunding companies is not only apparent in their allocation of donations and fee waivers, but also in their control over which campaigns are given space on their platforms. For example, in September 2014, GoFundMe published a list of causes they refused to support, including campaigns to directly fund abortions.17 While this decision has since been reversed, it reveals that these sites might not be as value-neutral as they appear. The structure of crowdfunding platforms thus places a great deal of leverage at the feet of crowdfunding companies regarding what care becomes accessible and to whom. Although this may be the norm in certain healthcare systems like the American multipayer system (which relies on corporate healthcare providers and insurers, for example), GoFundMe is distinctly not a healthcare company, and yet, it is de facto taking on similar responsibilities.

While at first glance medical crowdfunding might seem to level the playing field, in reality it may adversely affect how healthcare resources are allocated and accentuate existing injustices. Crowdfunding generally benefits patients who already belong to privileged groups and can put greater burden on public health services than might be readily apparent in a case like Charlie’s. Additionally, by acting as gatekeepers to their platforms, crowdfunding companies can control individual patients’ access to healthcare. As such, medical crowdfunding can shift the ethical responsibility for healthcare away from institutions that are designed for these purposes and onto companies that have no ostensible fiduciary responsibility.

Crowdfunding and commodification

Medical crowdfunding facilitates and solidifies the place of market norms in the healthcare space. As Sandel18 argues, the increasing marketisation of society threatens to crowd out non-market moral norms. In the context of crowdfunding, this marketisation stems from the for-profit motive of crowdfunding companies. Platforms like GoFundMe are answerable to investors and so have an interest in the success of their campaigns and thus profit from unmet medical needs.3 The Gard family’s campaign exemplifies three ways in which crowdfunding can lead market norms to take precedence over moral norms in healthcare: the commodification of healthcare and health, the prioritisation of patients’ financial standing over medical consensus and the impact of crowdfunding on experimental therapies and clinical research.

The transactional structure of medical crowdfunding promotes healthcare as a commodity properly governed by market norms, rather than a service to be distributed with regard for ethical principles and according to need.1 The introduction of for-profit crowdfunding companies into the healthcare space emphasises monetary motives, rather than typical norms of a universal healthcare system like the NHS. Charlie’s case, from which GoFundMe benefited significantly, exemplifies this shift. At the time, GoFundMe’s policy was to collect a 5% fee for use of the platform, a 2.5% processing fee and £0.20 per donation, indicating a five-figure profit from Charlie’s campaign alone.19 This for-profit model of medical crowdfunding enables the monetisation of health services and health by treating them as market commodities, thus degrading their valuation as human rights with intrinsic worth—a belief central to the UK’s nationalised healthcare system.

Because the Gard family crowdfunded to finance an experimental therapy with little expectation of clinical benefit, Charlie’s case illustrates how the commodification of healthcare in a nationalised system can diminish the importance of medical consensus relative to financial viability. As Truog15 highlights, some argue that patients should be able to purchase any treatment they can afford, even where clinical benefit is unlikely. While patients with a different type of MDDS had received nucleoside therapy with some benefit, there was no evidence to suggest that it could permeate the blood–brain barrier as would be necessary to treat Charlie’s particular mutation.4 All doctors who examined Charlie prior to the High Court’s decision on 11 April 2017 agreed that nucleoside therapy would be ineffective given his specific condition; this consensus on the improbability of its efficacy included Dr Hirano, the doctor who was willing to provide the treatment. The success of the Gard family’s crowdfunding campaign showed support for their pursuit of this treatment against clinical advice, thus demonstrating a prioritisation of ability to pay over medical consensus. While medical authority should not necessarily be paramount, its disregard is also inappropriate; the commodification of healthcare decisions by crowdfunding threatens to hedge out the non-market norm of respect for physician advice and evidence-based medicine.

Moreover, the Gard family’s determination to fund the nucleoside therapy challenges the ethical permissibility of paying for access to experimental treatments and clinical research. General acceptance of paying for access to research, whether this untested nucleoside therapy or a more formal study, could permit the avoidance of regulatory mechanisms that promote the rigour of experimental medicine.20 As Wenner et al21 articulate, paying to participate in research can ‘undermine the ability of oversight systems to protect patients, ensure the production of reliable medical evidence, and preserve confidence in the research enterprise itself’. Without these regulations, there is the potential for exploitation of individuals who lack the requisite knowledge to understand the incumbent risks.21 The ability to buy and sell access to research could also change the distribution of resources to privilege the wealthy (or successful crowdfunding recipients), thereby perpetuating inequities in healthcare quality and technology.1 13 Crowdfunding engenders a transactional relationship between medical researchers and participants, encouraging the encroachment of market norms into the clinical research space.

Crowdfunding and informed consent

In order for consent to be valid, it must be given freely and without undue influence from other parties. By its very nature, crowdfunding for health services introduces donors into the medical decision making process, creating a relational structure that may place pressure on patients-cum-funding recipients as they make choices about their healthcare. Such external influence may stem from perceived pressures inherent to the donor–recipient relationship, from social media and general public discourse, or from crowdfunding sites themselves, and has the potential to challenge the voluntariness of informed consent.

Due to its extraordinary financial success, the Gard family’s GoFundMe campaign represents an extreme case of how the donor–recipient structure of crowdfunding might pose a threat to patients-cum-funding recipients’ voluntary decision making. As previously mentioned, the page to finance Charlie’s access to nucleoside therapy received 84 384 donations, indicating support from members of the public for his continued pursuit of care.5 Understandably, the encouragement signified by over 80 000 financial contributions could introduce additional pressure to fulfil the promise of Charlie’s campaign, challenging the ability of his parents to change their minds after making such a public commitment. Crowdfunding donors, particularly in large numbers, may thus undermine the autonomous medical decision making of funding recipients.

Moreover, by relying heavily on social media, crowdfunding can bring medical decisions under public scrutiny and raise additional concerns about the voluntariness of informed consent. The international publicity garnered by Charlie’s linked GoFundMe and Facebook pages increased the campaign’s success but also had several negative consequences: during Charlie’s hospitalisation, his family was subjected to online harassment, and GOSH employees received death threats.22 While this degree of societal attention is certainly unusual for crowdfunding campaigns (which typically appeal only to friends and family, not the public at large),8 it indicates the degree to which individuals external to the case, whether donors or not, were committed to actively influencing the outcome. Such direct attempts to affect the behaviour of Charlie’s parents could have threatened their ability to act autonomously and provide fully voluntary informed consent for the nucleoside therapy and might have even overtly coerced them into pursuing the treatment. This could occur, although perhaps to a lesser extent, for recipients of more modest medical crowdfunding campaigns.

Regardless of campaign size, GoFundMe itself places pressure on funding recipients to act in accordance with the initial intent of their campaign. The GoFundMe Guarantee lists ‘instances where you didn’t pay for what the campaign was intended to reimburse’ as an example of ‘misuse’ of the site, with the potential of a legal penalty.23 It is unclear whether a change in medical decision making would qualify as such a breach; in Charlie’s case, GoFundMe’s donation to the campaign suggests it was deemed acceptable for the funds to be directed towards the foundation once pursuing treatment became impossible. Nonetheless, the theoretical threat of a lawsuit may exert additional influence on patients and families to remain committed to their original treatment decision. Because the extent of this pressure is unknown and unstudied, qualitative analysis of funding recipients’ experiences of decision making in this context would be helpful in ascertaining the true impact of these influences in practice. As explored above, the priorities of crowdfunding companies do not align with those typically emphasised in healthcare. Their values do not protect the interests of patients, healthcare providers or the public and, as such, crowdfunding sites can adversely impact medical decision making.

Conclusion

As the use of medical crowdfunding increases, it is important to identify the potential ethical implications of this practice and mitigate negative consequences. The case of Charlie Gard serves as a useful example to reveal the hidden impacts of crowdfunding on healthcare and its delivery, as the extraordinary success of the campaign draws attention to ethical concerns inherent to medical crowdfunding that may go unnoticed in less extreme circumstances. First, crowdfunding unjustly shifts the basis of healthcare resource allocation from medical need to characteristics such as appearance, background and ability to pay. Second, particularly within the NHS, healthcare is ostensibly not a market resource; thus, permitting crowdfunding might introduce market norms that could corrupt traditional perceptions of healthcare and health. Third, external pressures resulting from the donor–recipient relationship might unduly influence patients-cum-funding recipients, challenging their autonomous decision making. Given existing gaps in healthcare provision, individual medical crowdfunding campaigns are not themselves unethical (and indeed are necessary in some cases). However, the priorities of crowdfunding companies are constitutionally at odds with the accepted values of healthcare: these platforms prioritise profit over the protection of patients, healthcare providers and the public. Thus, while Charlie’s parents should not be faulted for turning to crowdfunding to pay for their son’s medical care, crowdfunding more generally remains a poor long-term solution for addressing insufficiencies in healthcare systems.

Acknowledgments

We would like to thank Anthony Breu, Spencer Phillips Hey, Jane Seymour and two anonymous reviewers for their thoughtful comments on earlier drafts of this manuscript.

References

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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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