Ethical implications of medical crowdfunding: the case of Charlie Gard

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.

A cross-sectional study of social inequities in medical crowdfunding campaigns in the United States

“…(2,(12)(13)(14) Yet with a few exceptions, empirical research on how these characteristics shape MCF access or success has been very limited. (3,(15)(16)(17) Despite widespread concerns among scholars about the ethical ramifications of MCF, and in particular its potential impacts on health disparities, (2,(12)(13)(14)18,19) there has been very limited empirical research to help answer these questions and inform future policy regarding the industry. A 2019 paper by van Duynhoven and colleagues spatially assessed the geography of Canadian cancer campaigns, finding that they were most common in urban areas with higher levels of income, home ownership, and education.…”

Bioethics and the use of social media for medical crowdfunding

“…People who are well connected are more likely to have successful campaigns, thus perpetuating inequality. In this way, donor decision-making is vulnerable to influence from social value instead of medical need [9] perpetuating unintended discrimination. More so in countries with significant socio-economic inequality, typically accentuated by a digital divide, further propagating injustices.…”

“…The case of Charlie Gard was one such crowdfunding campaign which managed to raise more than $1,2 million within 6 months to fund experimental treatment for a rare medical condition. The doctors who examined and treated him had agreed that the specific therapy was not going to be effective in this case [9]. The incident raised concerns about the nature of the doctor-patient relationship; the doctor's obligation to his patient, and the obligation to practice evidence-based medicine.…”

“…GoFundMe donated $10,000 to Charlie's campaign hosted on their platform but had refused to waive platform fees on a campaign supporting victims of a Somali drought in 2017, raising ethical disquiet. Of concern, is a gatekeeper role conferred on these platforms in deciding which campaigns are promoted, thus indirectly determining who gains access to care [9]. Similarly, it seems that crowdfunding websites are passive platform providers to campaigners without corresponding moral accountability [14].…”

“…Majority of patients are either too young or too sick to start these campaigns, thus placing them in a vulnerable position. Decisions are made on their behalf by caregivers or family members who decide on the extent of the information to be shared to raise funding [9]. Patients may feel compelled to agree to have pictures taken, and private information shared on social media platforms because of a state of powerlessness caused by the need for funding [17].…”