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

Claire Tanner, Megan Munsie, Doug Sipp, Leigh Turner, Chloe Wheatland

Research output: Contribution to journalArticlepeer-review

4 Scopus citations

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.

Original languageEnglish (US)
Pages (from-to)436-457
Number of pages22
JournalHealth (United Kingdom)
Volume23
Issue number4
DOIs
StatePublished - Jul 1 2019

Bibliographical note

Funding Information:
Melbourne and Head of the Engagement, Ethics and Policy Program at Stem Cells Australia, a national initiative funded by the Australian Research Council. Her research focuses on innovative public engagement and the development of ethical policy and professional standards associated with stem cell research and its translation.

Funding Information:
The author(s) disclosed receipt of the following financial support for the research, authorship, and/ or publication of this article: This study was funded by The Centre for Stem Cell Systems at The University of Melbourne.

Publisher Copyright:
© The Author(s) 2019.

Keywords

  • experiencing illness and narratives
  • narrative analysis
  • risk and health
  • social inequalities in health
  • technology in healthcare

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