TY - JOUR

T1 - Our year with the glass

T2 - expectations, letdowns and ethical dilemmas of technology trials with vulnerable people

AU - Vines, John

AU - McNaney, Róisín

AU - Holden, Amey

AU - Poliakov, Ivan

AU - Wright, Peter

AU - Olivier, Patrick

PY - 2017/1/1

Y1 - 2017/1/1

N2 - 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.

AB - 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.

KW - health care

KW - assistive technologies

KW - user studies

KW - user experience design

KW - ethics

KW - Parkinson's

U2 - 10.1093/iwc/iww017

DO - 10.1093/iwc/iww017

M3 - Journal article

AN - SCOPUS:85014376835

VL - 29

SP - 27

EP - 44

JO - Interacting with Computers

JF - Interacting with Computers

SN - 0953-5438

IS - 1

ER -