A Technological Fix? Patient-testimonies of neurostimulation on YouTube

• In Event: What are the Relationships between STS and Empirical Ethics? A Panel Discussion on Neuroethics

Abstract

YouTube has become a powerful and accessible medium of communication, and it is increasingly used by people to share their experiences of healthcare. In this presentation, we contribute to STS work on the performative role of expectations and hype in healthcare by investigating YouTube patient testimonies of deep brain stimulation (DBS). Specifically, we report on an on-going study involving the analysis of over 60 YouTube clips produced by people (vloggers) who are receiving DBS for the treatment of Parkinson’s disease. In order to investigate the possible role of these YouTube clips in fostering unrealistic expectations among potential patients, we explore how vloggers delineate the DBS intervention, how they present their neurological illness, and how they present themselves. We argue that these clips display common compositional elements that may have powerful, persuasive effects on audiences. These include: the use of dramatic ‘before & after’ and ‘on/off’ video footage; framing that elides the relationality of selfhood and care; and the display of affective corporeal moments. Overall, we argue, this corpus of self-made patient testimonies appears to perpetuate an ideology of technological solutionism, in which DBS is presented as a ‘fix’ for clearly delineable neurological problems. This obscures the complex impact of both the neurological illness and the DBS intervention on the individual and their family. We reflect on how social science studies such as this can guide the ethical, responsible implementation of promising but complex biomedical interventions.

Authors

• John Grant Gardner, Monash University, Australia

• Narelle Warren, Monash University

• Courtney Addison, Victoria University of Wellington