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网络疾病叙事中的证据政治:对拟干细胞治疗众筹的分析。

The politics of evidence in online illness narratives: An analysis of crowdfunding for purported stem cell treatments.

机构信息

The University of Melbourne, Australia.

RIKEN Center for Biosystems Dynamics Research, Japan.

出版信息

Health (London). 2019 Jul;23(4):436-457. doi: 10.1177/1363459319829194. Epub 2019 Feb 19.

Abstract

This article addresses the growing trend of crowdfunding for unproven stem cell-based treatments. Our analysis uses quantitative and qualitative data collected from two popular fundraising sites to examine how these sites are used to fund purported stem cell 'treatments' or 'therapies'. In addition to mapping the use and success of these online campaigns by people with different health conditions in different locations, we consider the breakthrough restitution story as a key narrative that campaign organisers use to solicit donations. We argue that crowdfunding is a rapidly growing digital space where 'truths' about experimental treatments are constituted and a politics of evidence is unfolding. These developments are to the potential financial benefit of crowdfunding platforms and businesses offering unproven stem cell-based interventions, and to the potential detriment of patients and their supporters.

摘要

本文探讨了众筹未经验证的干细胞治疗方法日益增长的趋势。我们的分析使用了从两个流行的筹款网站收集的定量和定性数据,以研究这些网站如何用于资助所谓的干细胞“治疗”或“疗法”。除了绘制不同地理位置、不同健康状况的人使用这些在线活动的情况和成功率之外,我们还考虑了突破赔偿的故事,这是活动组织者用来募集捐款的一个关键叙述。我们认为,众筹是一个快速发展的数字空间,在这个空间中,关于实验性治疗的“真相”正在形成,证据的政治也在展开。这些发展可能使众筹平台和提供未经证实的基于干细胞的干预措施的企业获得潜在的财务利益,但对患者及其支持者可能造成潜在的损害。

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