BackgroundSocial media has globalised compassion enabling requests for donations to spread beyond geographical boundaries. The use of social media for medical crowdfunding links people with unmet healthcare needs to charitable donors. There is no doubt that fundraising campaigns using such platforms facilitates access to financial resources to the benefit of patients and their caregivers.Main textThis paper reports on a critical review of the published literature and information from other online resources discussing medical crowdfunding and the related ethical questions. The review (...) highlighted the benefits of crowdfunding as well as the under-exploration of the risk of having patients’ desires and human rights undermined during online fundraising campaigns. Majority of these campaigns get initiated on behalf of the patients, especially the very sick and dependant. The ethical questions raised relate to the voluntariness of informed consent and the possibility of patients being used as a means to an end. Vulnerability of patients may expose them to coercion, undue influence, manipulation, and violation of their human rights. The success of these campaigns is influenced by the digital skills, pre-existing social networks and, the emotional potency. Healthcare is a public good, and online market forces should not determine access to essential health services. The benefits of crowdfunding cannot be subverted, but it can perpetuate unintended injustices, especially those arising from socio-economic factors.ConclusionsPolicymakers ought to monitor the utilisation of crowdfunding sites to identify policy failures and unmet essential health care needs responsible for driving individuals to use these platforms. The upholding of human rights and the fundamental respect of the individual’s wishes is a moral imperative. The need for an ethics framework to guide different stakeholders during medical crowdfunding needs further examination. (shrink)

Medical crowdfunding has become a popular choice worldwide for people with unaffordable health needs. In low-income and middle-income countries with limited social welfare arrangements and a high incidence of catastrophic health spending, the market for medical crowdfunding is booming. However, relevant research was conducted exclusively in North America and Europe; little is known about medical crowdfunding activities inother contexts. As a first step towards filling this knowledge gap, this study depicts the realities of medical crowdfunding in a middle-income country China (...) through empirical investigation and ethical analysis. We examine 100 randomly selected medical campaigns from a major Chinese crowdfunding platform and analyse the relevance of the previously identified ethical concerns to the Chinese context. The empirical findings show that Chinese campaigns have low and uneven success rates, require legally the participation of charitable organisations and focus on financial distress and family values in appealing for donations. In addition, the ethical analysis suggests that medical crowdfunding in China shares several ethical concerns raised in developed countries such as the veracity of claims and privacy violation. More importantly, our research reveals the inadequacy of current evidence and the lack of indicators to evaluate ethical issues in practice. Additional research is needed to better understand this fundraising practice across different social and cultural contexts. (shrink)

With the increasing prices of newly approved anti-cancer treatments contributing to rising healthcare costs, healthcare systems are facing complex economic and ethical dilemmas. Especially in countries with universal access and mandatory health insurance, including many European countries, the organizing of funding or reimbursement of expensive new treatments can be challenging. When expensive anti-cancer treatments are deemed safe and effective, but are not (yet) reimbursed, ethical dilemmas arise. In countries with universal healthcare systems, such as the Netherlands, this gives rise to (...) a rather new ethical dilemma: should patients be allowed to pay out of pocket, using private funds, for medical treatments? On the one hand, to allow patients to pay for treatments out of pocket would be in line with the medical-ethical principles of beneficence and autonomy. On the other hand, allowing patients to pay out of pocket for anti-cancer treatments may lead to unequal access to medical treatments and could be considered unfair to patients who are less well-off. Thus, it could undermine the values of equality and solidarity, on which the Dutch healthcare system is built. Furthermore, out-of-pocket payments could potentially lead to financial hardship and distress for patients, which would conflict with the principle of non-maleficence. Does this mean that patients can rightfully be denied access to approved but not (yet) reimbursed anti-cancer treatments? In this article, we will use the Dutch healthcare system, which is based on equal access and solidarity, as a case study to draw attention to this—currently relatively unknown and unresolved—dilemma and to clarify the values at stake. This article contributes to current discussions about the societal problem of rising healthcare costs by informing policymakers, healthcare professionals, and ethicists about the ethical dilemma of out-of-pocket payments in universal healthcare systems, and aims to support health authorities, policymakers and health professionals in developing policy for whether to allow out-of-pocket payment-based access to newly approved but (too) expensive anti-cancer treatments. (shrink)

Medical crowdfunding has raised many ethical concerns, among them that it may undermine privacy, widen health inequities, and commodify health care. One motivation for medical crowdfunding has received particular attention among ethicists. Recent studies have shown that many individuals are using crowdfunding to finance access to scientifically unsupported medical treatments. Recently, GoFundMe prohibited campaigns for antivaccination groups on the grounds that they “promote misinformation about vaccines” and for treatment at a German clinic offering unproven cancer treatments due to “the need (...) to make sure people are equipped to make well‐informed decisions.” GoFundMe has not taken any additional actions to regulate the much larger presence of campaigns seeking to fund unproven medical interventions on the platform. In this article, we make the ethical case for intervention by GoFundMe and other crowdfunding platforms. (shrink)

The healthcare system—the assemblage of hospitals, insurers, professional associations, policymakers, patients, caregivers, and other entities oriented toward health in the United States—does more than cure illness. It is, and in some cases ought to be but falls short, attentive to endpoints other than cure, such as comfort, participation in desired activities, and the creation of families—things that may broadly be understood as promoting well-being. In the United States, health care utilization is prohibitively expensive. As a result, most people can only (...) access care through insurance. While the care available within the broad U.S. healthcare system may be oriented toward a wide variety of endpoints, insurance... (shrink)

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. (shrink)