School of Nursing and Health Studies, University of Washington Bothell.
Med Anthropol Q. 2021 Sep;35(3):327-345. doi: 10.1111/maq.12639. Epub 2021 Mar 12.
This article explores how inequities are reproduced by, and valued within, the increasingly ubiquitous world of medical crowdfunding. As patients use platforms like GoFundMe to solicit donations for health care, success stories inundate social media. But most crowdfunders experience steep odds and marginal benefits. Drawing on the problematic figure of the "black box" in health disparities research and technology studies, I offer ethnography as a tool for unpacking often inscrutable and complex pathways through which online platforms amplify inequities. By leveraging both online and traditional research strategies-a platform analysis and paired narratives of crowdfunders' disparate experiences, drawn from open-ended interviews-this article explores how inequities are created and experienced by users. The analysis highlights how inequities are simultaneously central to the functioning of this marketplace and occluded by its platform design. Consequently, crowdfunding is concealing health inequities while shifting public values about who is entitled to health care, and why.
本文探讨了不平等是如何在日益普及的医疗众筹世界中产生和被重视的。当患者使用 GoFundMe 等平台为医疗保健筹款时,成功案例充斥着社交媒体。但大多数众筹者都面临着严峻的挑战和微薄的收益。借鉴健康差异研究和技术研究中存在问题的“黑箱”人物形象,我提出了民族志作为一种工具,用于剖析在线平台放大不平等现象的往往难以理解和复杂的途径。本文通过利用线上和传统研究策略——对平台的分析和对众筹者不同经历的配对叙述,这些都是从开放式访谈中得出的——探讨了不平等是如何被用户创造和体验的。分析强调了不平等是如何同时成为这个市场运作的核心,同时又被其平台设计所掩盖。因此,众筹正在掩盖健康不平等,同时改变公众对谁有权获得医疗保健以及为什么有权获得医疗保健的价值观。