Guest Post: Jeremy Snyder
Paper:Appealing to the crowd: ethical justifications in Canadian medical crowdfunding campaigns
Medical crowdfunding is a practice where users take advantage of the power of social networks to raise funds related to medical needs from friends, family, and strangers by sharing fundraising appeals online. Popular venues include GiveForward, GoFundMe, and YouCaring, among others. This practice appears to be growing in terms of the number of active campaigns, the amount of money raised, and its visibility. An analysis of five crowdfunding sites found that in 2015 41% of all fundraising campaigns were for medical needs.
Medical crowdfunding has not received a great deal of scrutiny from ethicists or other academics. We are interested in a number of questions related to medical crowdfunding, including determining what reasons are given by campaigners for potential donors to contribute to their campaigns. In order to answer this question, we recorded and analyzed the language used in 80 medical crowdfunding campaigns, focusing on campaigns by Canadians.
We found that the reasons given for donating can be broken into three groups. First, campaigners used personal appeals to encourage giving, focusing their attention on friends and family members who already knew the recipient. This personal connection to the recipient was often framed as creating a reason to give, such as that “we should gather around them as one big family and help as much as possible.” These appeals can be linked to the ethics of care and relational ethics. Second, the depth of the recipient’s need and resulting positive impact of donations were framed as creating reasons to give. These arguments echo justifications found in the duty of beneficence and utilitarian thinking. Finally, campaigners argued that donors should contribute as a way of giving back to recipients who had helped others. These campaigns made the point that the recipient’s generosity created a community debt where “now it’s our turn to help.” In this way, the values of fairness and reciprocity were represented in these campaigns.
In addition to shedding light on the kinds of reasons given for donating to Canadian medical crowdfunding campaigns, we think that a particularly important finding of our research is a reason that was largely absent from these campaigns. The decision to resort to medical crowdfunding could reasonably be construed as resulting from a failure of the recipient’s community and health system to provide for the recipient’s medical needs. This potential injustice could result from failures to provide treatment for ‘elective’ needs such as dental care, needs related to medical care such as time off work for family members, lack of access to unproven interventions that are perceived to offer the possibility of improved health, or wait times for access to care. The sole exception to this finding was a campaign seeking treatment of Lyme disease outside of Canada, where the campaign described the Canadian healthcare system as a “nightmare.” This outlier may be attributed to the fact that in Canada, diagnosis and treatment of Lyme disease is a highly contentious issue that has resulted in organization and advocacy by those who believe themselves to be receiving inadequate diagnosis and treatment.
This finding supports an ethical concern that has been raised regarding medical crowdfunding. There is good reason to fear that the benefits of this practice will be spread unequally, accruing disproportionately to those already in a relatively privileged position in society. This is because individuals with large social networks, contacts in the media, and skills in online communication will have an advantage in meeting their fundraising goals. This inequity would be worrisome even if it did not disadvantage those not using or less successful with medical crowdfunding. However, medical crowdfunding may also obscure and detract attention from addressing the systemic injustices that motivate this practice.
What is needed now is broader research to determine whether the reasons given for donating to medical crowdfunding campaigns differ among distinct medical needs and health systems. Such research would help to assess the validity of concerns around medical crowdfunding’s impact on health equity and health systems. To address these concerns, we need also to know why discussion of systemic injustice is largely missing from these campaigns. Our own research has offered one answer to this question. The leading websites that host medical crowdfunding campaigns tend to emphasize positive, optimistic messaging and urge the portrayal of recipients as victims of bad luck rather than injustice. If these websites are influencing the reasons for giving used in medical crowdfunding campaigns and therefore our perceptions of the causes of their recipients’ need, then we have at least a first target to focus on in order to address this ethical concern.