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Is there room for privacy in medical crowdfunding?
  1. Jeremy Snyder1,
  2. Valorie A Crooks2
  1. 1Faculty of Health Sciences, Simon Fraser University, Burnaby, British Columbia, Canada
  2. 2Department of Geography, Simon Fraser University, Burnaby, British Columbia, Canada
  1. Correspondence to Dr Jeremy Snyder, Faculty of Health Sciences, Simon Fraser University, Burnaby, Canada; jcs12{at}sfu.ca

Abstract

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.

  • Ethics
  • Confidentiality/Privacy
  • Children
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Footnotes

  • Contributors JS obtained the data for this study and contributed to the research design, data analysis, manuscript writing and manuscript editing. VAC contributed to the research design, data analysis, manuscript writing and manuscript editing.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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