“…When it came to sensitive information, we made edits, and we took it back”: qualitatively exploring the role responsibilities taken on by Canadians who crowdfund on behalf of someone else from a privacy perspective

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Abstract
Background: 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. Methods: 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. Findings: 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. Conclusion: 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.

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