Stem cell miracles or Russian roulette?: patients’ use of digital media to campaign for access to clinically unproven treatments

Abstract

In this article, we examine how patients use digital media to gain access to treatments that have yet to be clinically proven as safe and effective. Making reference to the case of an Australian patient who achieved notoriety following a 60 Minutes television programme in 2014 following her travel to Russia to undertake stem cell treatment, in the article we discuss the dynamic interplay of discourses of hope, risk and trust in this digitally mediated context. As we argue, Web 2.0 digital media provides patient activists with a powerful means to generate their own framings of the significance of treatments especially when linked with more traditional media such as television. Our findings underline how citizens may use digital media to create ‘communities of hope’ that sustain optimistic portrayals of treatments that may be resistant to official, regulatory discourses of risk-benefit and trust. Patients’ growing use of digital media, we conclude, necessitates a reconceptualisation of ‘health’ and ‘risk’ and approaches to regulating treatments that are unproven and hence deemed ‘risky’.

Keywords:

• risk
• digital media
• digitisation
• social media
• stem cell science
• patient activism

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This work was supported by the Australian Research Council [grant number DP120100921];