Snyder Jeremy, Crooks Valorie A
Faculty of Health Sciences, Simon Fraser University, Burnaby, British Columbia, Canada
Department of Geography, Simon Fraser University, Burnaby, British Columbia, Canada.
J Med Ethics. 2020 Nov 18. doi: 10.1136/medethics-2020-106676.
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.
当人们利用在线平台为与健康相关的需求向他人募集资金时，他们就是在进行医疗众筹。这种众筹形式越来越受欢迎，而且随着众筹活动通常通过社交网络进行分享，其知名度也在不断提高。关于医疗众筹已经引发了一些伦理问题，其中之一就是它带来了诸多隐私方面的担忧。虽然鼓励发起众筹者分享非常私密的细节以鼓励捐款，但此类细节的分享可能会导致受益者的隐私泄露。在此，我们通过研究从GoFundMe平台上抓取的针对有特定健康需求儿童的众筹活动（n = 100），来探讨医疗众筹行为可能威胁隐私的方式。我们发现了与受益者私人细节披露、图片包含情况以及发起众筹者、资金接收者和受益者之间关系的性质相关的特定隐私问题。例如，研究发现发起众筹者经常会提及受益者的个人和医疗细节，包括症状（n = 52）和治疗史（n = 43）。虽然所发现的隐私问题存在问题，但鉴于众筹有强大的经济激励因素，这些问题也难以解决。然而，众筹平台可以加强隐私保护，例如要求代表儿童受益者进行众筹的人确保已获得其监护人的同意，并为代表无法对众筹活动给予同意的人发起的众筹活动中包含个人信息提供额外指导方针。
