Jeremy Snyder

Medical crowdfunding, a type of donation-based crowdfunding, is gaining prominence and enabling people to gather funds for medical treatments, surgeries, and other health needs. While this practice may democratize access to health care, it also raises ethical concerns, including breaching individuals’ privacy. Despite these concerns, little consideration has been given specifically to the privacy-related issues that emerge when people crowdfund on behalf of others’ health-related financial needs. A study was undertaken to qualitatively explore the roles and associated role responsibilities of Canadians who crowdfund on behalf of others for their health needs. Twelve interviews were conducted with participants who had posted campaigns on the GoFundMe platform between January and December 2023. Interviews were transcribed, coded, and analyzed thematically. Three key roles that had important privacy dimensions were identified: managing initial content, navigating informational considerations, and facilitating ongoing connections. Campaigners typically collaborated with recipients to craft compelling narratives, seek consent for sharing personal information, and provide regular updates to maintain donor engagement. Balancing campaign transparency with recipients’ privacy concerns was crucial in the crowdfunding process. Campaigners play pivotal roles in medical crowdfunding when doing so on behalf of funding recipients, including balancing the need for fundraising with the protection of recipients’ privacy. Clear guidelines are needed to support campaigners in navigating the ethical complexities that emerge. Further research is needed to address existing knowledge gaps and enhance the ethical integrity of crowdfunding practices.

When prices for basic commodities increase following a disaster, these price increases are often condemned as ‘price gouging.’ In this paper, I discuss what moral wrongs, if any, are most reasonably ascribed to accusations of price gouging. This discussion keeps in mind both practical and moral defenses of price increase following disasters. I first examine existing anti-gouging legislation for commonalities in their definitions of gouging and then present arguments in favor of the permissibility of gouging, focusing on the economic benefits of price increases following disasters. I argue that gouging takes the form of a specific failure of respect for persons by undercutting equitable access to essential goods. While I discuss anti-gouging legislation throughout this paper, my aim is to give anaccount of the moral wrongs associated with gouging rather than guidance for developing morally defensible anti-gouging legislation.

Medical tourism, the practice of persons intentionally travelling across international boundaries to access medical care, has drawn increasing attention from researchers, particularly in relation to potential ethical concerns of this practice. Researchers have expressed concern for potential negative impacts to individual safety, public health within both countries of origin for medical tourists and destination countries, and global health equity. However, these ethical concerns are not discussed within the sources of information commonly provided to medical tourists, and as such, medical tourists may not be aware of these concerns when engaging in medical tourism. This paper describes the methodology utilized to develop an information sheet intended to be disseminated to Canadian medical tourists to encourage contemplation and further public discussion of the ethical concerns in medical tourism. The methodology for developing the information sheet drew on an iterative process to consider stakeholder feedback on the content and use of the information sheet as it might inform prospective medical tourists’ decision making. This methodology includes a literature review as well as formative research with Canadian public health professionals and former medical tourists. The final information sheet underwent numerous revisions throughout the formative research process according to feedback from medical tourism stakeholders. These revisions focused primarily on making the information sheet concise with points that encourage individuals considering travelling for medical tourism to do further research regarding their safety both within the destination country, while travelling, and once returning to Canada, and the potential impacts of their trip on third parties. This methodology may be replicated for the development of information sheets intending to communicate ethical concerns of other practices to providers or consumers of a certain service.

Contemporary accounts of the concept of exploitation can be grouped into camps that tie the wrongness of taking advantage of another person to: (1) the unfair division of benefits resulting from an interaction; (2) excessive benefits resulting from structural injustice; and (3) a failure of respect for others’ humanity. In practice, accounts of exploitation that focus on the fairness of benefits resulting from individual transactions and, to a lesser degree, unjust social and economic institutions have dominated the applied ethics literature using the concept of exploitation. However, fairness-based accounts of exploitation have a difficult time explaining a common dimension of purportedly exploitative cases in the press and academic literature—namely the absolute deprivation of and/or experience of injustice by victims of exploitation. In this paper, I argue that a respect-based account can explain how exploitation arises both from individual interactions and against a backdrop of injustice. Specifically, our connections with one another and social and economic institutions specify the duty of beneficence and political responsibility to promote just institutions. Exploitation takes place when people fail to act on these specified obligations in favor of their own benefit.

Numerous social, economic and academic pressures can have a negative impact on representations of biomedical research. We review several of the forces playing an increasingly pernicious role in how health and science information is interpreted, shared and used, drawing discussions towards the role of narrative. In turn, we explore how aspects of narrative are used in different social contexts and communication environments, and present creative responses that may help counter the negative trends. As traditional methods of communication have in many ways failed the public, changes in approach are required, including the creative use of narratives.

In the context of medical tourism, circumvention tourism consists of traveling abroad with the intention of participating in a health-related activity that is prohibited in one’s own country but not in the destination country. This practice raises a host of legal and ethical questions that focus on how the traveler should be treated once they have returned home. Joshua Shaw1 deftly shows that the question of whether circumvention tourists should be punished in their home countries is not something that can be answered in principle and without reference to the prima facie morality of the prohibition. This implicates formalist accounts of circumvention tourism developed by Pennings2 and Huxtable3 that argue against punishing travelers who access fertility treatments and medical assistance in dying abroad on the grounds that civic peace and stability require opportunities for individuals to travel internationally to access domestically prohibited medical services.

We often hear stories of people in terrible and seemingly intractable situations that are preyed upon by individuals offering empty promises of help. Frequently these cases are condemned as "exploiting the hope" of another. These accusations are made in a range of contexts, including human smuggling, the beauty industry, and unproven medical interventions. This concept is meant to do heavy lifting in public discourse, identifying a specific form of unethical conduct. However, it is poorly understood what is intended to be wrong by exploiting hope, the range of activities that can accurately be captured under this concept, and what should be done about it. Thus, it is an ethical concept that is ripe for extended analysis and discussion.

When people use online platforms to solicit funds from others for health-related needs, they are engaging in medical crowdfunding. This form of crowdfunding is growing in popularity, and its visibility is increasing as campaigns are commonly shared via social networking. A number of ethical issues have been raised about medical crowdfunding, one of which is that it introduces a number of privacy concerns. While campaigners are encouraged to share very personal details to encourage donations, the sharing of such details may result in privacy losses for the beneficiary. Here, we explore the ways in which privacy can be threatened through the practice of medical crowdfunding by exploring campaigns (n=100) for children with defined health needs scraped from the GoFundMe platform. We found specific privacy concerns related to the disclosure of private details about the beneficiary, the inclusion of images and the nature of the relationship between campaigner, funding recipient and beneficiary. For example, it was found that identifying personal and medical details about the beneficiary, including symptoms (n=52) and treatment history (n=43), were often mentioned by campaigners. While the privacy concerns identified are problematic, they are also difficult to remedy given the strong financial incentive to crowdfund. However, crowdfunding platforms can enhance privacy protections by, for example, requiring those campaigning on behalf of child beneficiaries to ensure consent has been obtained from their guardians and providing additional guidelines for the inclusion of personal information in campaigns made on behalf of those not able to give their consent to the campaign.

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.

Task shifting is increasingly used to address human resource shortages impacting HIV service delivery in low- and middle-income countries. By shifting basic tasks from higher- to lower-trained cadres, such as Community Health Workers, task shifting can reduce overhead costs, improve community outreach, and provide efficient scale-up of essential treatments like antiretroviral therapies. Although there is rich evidence outlining positive outcomes that CHWs bring into HIV programs, important questions remain over their place in service delivery. These challenges often reflect concerns over whether CHWs can mitigate HIV through a means that does not overlook the ethical and practical constraints that undergird their work. Ethical and practical guidance thus needs to become the cornerstone of CHW deployment. This paper analyzes such challenges through the lens of Ethical Principlism. We examined papers identifying substantive and ethical challenges impacting CHWs as they provide HIV services in low- and middle-income contexts. To do this, we analyzed papers written in English and published from year 2000 or later. These articles were identified using MEDLINE, Cochrane Database of Systematic Reviews, and Google Scholar databases. In total, 465 articles were identified, 78 of which met our inclusion criteria. Article reference lists and grey literature were also examined. CHWs experience specific challenges while carrying out their duties, such as conducting emotionally- and physically-demanding tasks with often inadequate training, supervision and compensation. CHWs have also been poorly integrated into health systems, which not only impacts quality of care, but can hinder their prospects for promotion and lead to CHW disempowerment. As we argue, these challenges can be addressed if a set of ethical principles is prioritized, which specifically entail the principles of respect for persons, justice, beneficence, proportionality and cultural humility. CHWs play a crucial role in HIV service delivery, yet the ethical challenges that can accompany their work cannot be overlooked. By prioritizing ethical principles, policymakers and program implementers can better ensure that CHWs are combatting HIV through a means that does not exploit or take their critical role within service delivery for granted.

Medical tourism, the practice of persons intentionally travelling across international boundaries to access medical care, has drawn increasing attention from researchers, particularly in relation to potential ethical concerns of this practice. Researchers have expressed concern for potential negative impacts to individual safety, public health within both countries of origin for medical tourists and destination countries, and global health equity. However, these ethical concerns are not discussed within the sources of information commonly provided to medical tourists, and as such, medical tourists may not be aware of these concerns when engaging in medical tourism. This paper describes the methodology utilized to develop an information sheet intended to be disseminated to Canadian medical tourists to encourage contemplation and further public discussion of the ethical concerns in medical tourism. The methodology for developing the information sheet drew on an iterative process to consider stakeholder feedback on the content and use of the information sheet as it might inform prospective medical tourists’ decision making. This methodology includes a literature review as well as formative research with Canadian public health professionals and former medical tourists. The final information sheet underwent numerous revisions throughout the formative research process according to feedback from medical tourism stakeholders. These revisions focused primarily on making the information sheet concise with points that encourage individuals considering travelling for medical tourism to do further research regarding their safety both within the destination country, while travelling, and once returning to Canada, and the potential impacts of their trip on third parties. This methodology may be replicated for the development of information sheets intending to communicate ethical concerns of other practices to providers or consumers of a certain service.

BackgroundMedical tourism, the practice of persons intentionally travelling across international boundaries to access medical care, has drawn increasing attention from researchers, particularly in relation to potential ethical concerns of this practice. Researchers have expressed concern for potential negative impacts to individual safety, public health within both countries of origin for medical tourists and destination countries, and global health equity. However, these ethical concerns are not discussed within the sources of information commonly provided to medical tourists, and as such, medical tourists may not be aware of these concerns when engaging in medical tourism. This paper describes the methodology utilized to develop an information sheet intended to be disseminated to Canadian medical tourists to encourage contemplation and further public discussion of the ethical concerns in medical tourism.MethodsThe methodology for developing the information sheet drew on an iterative process to consider stakeholder feedback on the content and use of the information sheet as it might inform prospective medical tourists’ decision making. This methodology includes a literature review as well as formative research with Canadian public health professionals and former medical tourists.ResultsThe final information sheet underwent numerous revisions throughout the formative research process according to feedback from medical tourism stakeholders. These revisions focused primarily on making the information sheet concise with points that encourage individuals considering travelling for medical tourism to do further research regarding their safety both within the destination country, while travelling, and once returning to Canada, and the potential impacts of their trip on third parties. This methodology may be replicated for the development of information sheets intending to communicate ethical concerns of other practices to providers or consumers of a certain service.

Medical tourism is a practice, whereby individuals travel across national borders with the intention of receiving medical care. Medical tourists are motivated to travel abroad by a number of factors, including the affordability of care abroad, access to treatments not available at home, and wait times for care at home. In this article, we share the findings of interviews conducted with 32 Canadian medical tourists with the aim of developing a better understanding of medical tourism, the ethical issues it raises for public health within Canada and other source countries for medical tourists, and to identify research gaps and policy responses to this practice. While patient and academic perspectives overlap in several regards, we suggest areas in which academic consideration of the ethical issues raised by medical tourism can be informed by patient perspectives

In this response, I reiterate my argument that price gouging undercuts the goal of equity in access to essential goods whereas Zwolinski emphasizes the importance of the efficient provision of essential goods above all other goals. I agree that the efficient provision of essential goods is important as I argue for the goal of equitable access to sufficient of the goods essential to living a minimally flourishing human life. However, efficiency is a means to this goal rather than the end itself. Finally, I offer additional arguments against the non-worseness claim

BackgroundWhile ethicists have for many years called for human subject trial participants and, in some cases, local community members to benefit from participation in pharmaceutical and other intervention-based therapies, little is known about how these discussions are impacting the practice of research ethics boards that grant ethical approval to many of these studies.MethodsTelephone interviews were conducted with 23 REB members from across Canada, a major funder country for human subject research internationally. All interviews were digitally recorded and transcribed verbatim. After coding, the data was analyzed to identify central themes and topics. Themes were identified, application of the themes was confirmed, and these themes were then used to populate the findings of this manuscript.ResultsOur analysis of the interviews identified two primary themes when considering what benefits are owed to research participants and their communities. 1) Most study participants felt that given that these studies are led by persons in the role of researcher rather than health care provider, they had a limited obligation to provide benefits to study participants. 2) These REB members were all working in Canada, a high income country where most residents enjoy high levels of access to health care. As a result of this context, the study participants tended to focus on ethical concerns including obtaining informed consent and avoiding undue inducement to participate in research rather than ensuring that study participants directly benefit from successful trials.ConclusionsResearch on REB members’ attitudes toward what benefits are owed to study participants and community members is needed in other countries in order to determine how context affects these attitudes.

Ballantyne correctly notes the need for clarification as to the standard of fairness that should guide nonexploitative international research on human subjects. When accounts of exploitation are applied to pharmaceutical development (as well as other areas), there is too often an uncritical acceptance that exploitation involves a form of unfairness. Moreover, these authors typically fail to produce an account of fairness by which exploitation should be identified. Ballantyne should be applauded for her attempt to inject greater clarity into these debates. Her preferred standard of fairness is problematic, however. Ballantyne fails to distinguish between at least two forms of exploitation, tied to two distinct forms of unfairness, that can take place in international research on human subjects. As I argue here, the first form of exploitation derives from transactional unfairness where researchers take special unfair advantage of research subjects. The second form of exploitation occurs when researchers take advantage of background injustices that disadvantage research subjects. As a result of this failure to differentiate between different forms of exploitation, Ballantyne misidentifies the requirements of fairness for engaging in nonexploitative international human subject research.

Scholarship aiming to describe the wrongness of exploitation, especially when it is voluntary and mutually beneficial, has increased greatly in recent years. In this paper, I expand the scope of this discussion by highlighting a set of additional ethical concerns associated with many cases of mutually voluntary and beneficial exploitation. Specifically, I argue that the phenomenon of persons desperately seeking out and gratefully accepting exploitative interactions raises special moral concerns. The element of voluntariness is key to understanding how and why some exploitative interactions are degrading to exploitees. When an exploitative offer does not allow the exploitee sufficient progress toward a decent minimum of human functioning, these offers can create what I call a 'demeaning choice', where the exploitee may either accept the status quo or accept an offer that improves the exploitee's insufficiently. In these cases, the exploitee's participation in the interaction contributes to its demeaning quality, creating a form of `surface endorsement' of the treatment that she receives

Medical tourism is international travel with the intention of receiving medical care. Medical tourists travel for many reasons, including cost savings, limited domestic access to specific treatments, and interest in accessing unproven interventions. Medical tourism poses new health and safety risks to patients, including dangers associated with travel following surgery, difficulty assessing the quality of care abroad, and complications in continuity of care. Online resources are important to the decision-making of potential medical tourists and the websites of medical tourism facilitation companies are an important source of online information for these individuals. These websites fail to address the risks associated with medical tourism, which can undermine the informed decision-making of potential medical tourists. Less is known about patient testimonials on these websites, which can be a particularly powerful influence on decision-making

Many people in desperate need of an organ will die on waiting lists for transplantation or face increased morbidity because of their wait. This circumstance is particularly troubling since many viable organs for transplantation go unused when individuals fail to participate in their local organ donation system. In this paper, I consider whether participating in organ transplantation should be considered a form of a rescue of others from the great harms caused by a shortage in transplantable organs. Specifically, I consider whether cadaver organ transplantation is a case of an easy rescue. If so, participation in cadaver organ transplantation will be a duty rather than a supererogatory act.1 This question is important in illuminating individual duties to participate in organ transplantation. Moreover, as I will argue, it has repercussions for community-wide policies for enrolling individuals in transplantation schemes. In the first section of this paper, I tie cadaver organ transplantation to the duty to rescue others from great harm when it is easy to do so. Given the number of persons who will die or be greatly harmed without transplanted organs, the transfer of organs upon death is seemingly similar to other, classical cases of easy rescue. In the second section, I consider objections to this proposal on the ground that cadaver organ transplantation is structurally dissimilar to classical rescue cases, especially given uncertainty over when and to whom organs will be transplanted, if they are transplanted at all. In the third section, I consider the objection that cadaver organ transplantation is a demanding, rather than easy, rescue. While I grant that cadaver organ transplantation will be demanding for some persons, I argue that there remain many cases where it will be an easy rescue. In the final section, I consider the policy implications of my argument. In particular, I argue that understanding cadaver organ transplantation as a duty should shift the debate over opt-out, opt-in, and mandatory choice procedures for participating in organ transplantation upon death. While different systems will be appropriate for different communities, understanding transplantation as a duty in some cases helps to justify an opt-out system.

Medical tourism is the practice of traveling across international borders with the intention of accessing medical care, paid for out-of-pocket. This practice has implications for preferential access to medical care for Canadians both through inbound and outbound medical tourism. In this paper, we identify four patterns of medical tourism with implications for preferential access to care by Canadians: Inbound medical tourism to Canada’s public hospitals; Inbound medical tourism to a First Nations reserve; Canadian patients opting to go abroad for medical tourism; and Canadian patients traveling abroad with a Canadian surgeon. These patterns of medical tourism affect preferential access to health care by Canadians by circumventing domestic regulation of care, creating jurisdictional tensions over the provision of health care, and undermining solidarity with the Canadian health system.

Crowdfunding websites allow users to post a public appeal for funding for a range of activities, including adoption, travel, research, participation in sports, and many others. One common form of crowdfunding is for expenses related to medical care. Medical crowdfunding appeals serve as a means of addressing gaps in medical and employment insurance, both in countries without universal health insurance, like the United States, and countries with universal coverage limited to essential medical needs, like Canada. For example, as of 2012, the website Gofundme had been used to raise a total of 8.8 million dollars for seventy-six hundred campaigns, the majority of which were health related. This money can make an important difference in the lives of crowdfunding users, as the costs of unexpected or uninsured medical needs can be staggering. In this article, I offer an overview of the benefits of medical crowdfunding websites and the ethical concerns they raise. I argue 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. Despite the sites’ ethical problems, individual users and donors need not refrain from using them, but they bear a political responsibility to address the inequities encouraged by these sites. I conclude by suggesting some responses to these concerns and future directions for research.