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 M. C. Wright, Patrick L. Olivier · Interacting with Computers · 2016
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. We conducted ‘in the wild’ deployments of Google Glass with people with Parkinson's. There were several ethical implications of conducting this type of research, wherein the technology in question was still being developed and updated by its commercial manufacturer. Prior publicity about our project caused participants to formulate overly positive preconceptions around the technology. We reflect in detail on some of the decisions and actions taken during the project, and discuss strategies for researchers to take into account in future studies that might help anticipate, avoid and negotiate ethical dilemmas in the future.