Our year with the glass: expectations, letdowns and ethical dilemmas of technology trials with vulnerable people

John Vines, Róisín McNaney, Amey Holden, Ivan Poliakov, Peter Wright, Patrick Olivier

Research output: Contribution to journalArticleResearchpeer-review

12 Citations (Scopus)

Abstract

In this paper, we reflect upon the ethical dilemmas faced during our research exploring the potential of Google Glass as a self-care technology for people with Parkinson's. Our project involved two stages of research: an initial study that explored the overall acceptability and responses of people with Parkinson's to the technology; and a follow-up study that examined participants' experiences of the technology in more depth through further trials and a series of co-design activities. While our first trials were successful, leading to publication and subsequent local and national publicity, our follow-up trials were hampered by technical problems that were often out of our control. We highlight how participants' heightened expectations prior to the second trial, as a result of public discourse around the project, were difficult to meet. This led to our participants articulating their frustrations, feelings of lowered self-confidence, and in some cases a reduced sense of self-worth. We reflect on how the decisions and actions taken during the project led to these dilemmas, and how these relate to contemporary challenges in human-computer interaction research where there is increased focus on in the wild studies of technology use and a pressure to publicly disseminate the findings of research. In doing so, we offer an open and honest account of how a set of ethical dilemmas emerged while conducting technology field trials with a potentially vulnerable group, and offer guidance to future researchers finding themselves in similar circumstances.

Original languageEnglish
Pages (from-to)27-44
Number of pages18
JournalInteracting with Computers
Volume29
Issue number1
DOIs
Publication statusPublished - 2017
Externally publishedYes

Keywords

  • Digital Health
  • Parkinson's disease
  • Google Glass
  • Ethics

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