Ethics is for human subjects too: Participant perspectives on responsibility in health research Susan M. Cox * , Michael McDonald The W. Maurice Young Centre for Applied Ethics, School of Population and Public Health, The University of British Columbia, #233 e 6356 Agricultural Rd., Klinck Bldg., Vancouver, BC, Canada V6T 1Z2 article info Article history: Available online 7 October 2013 Keywords: Canada Research ethics Participant perspectives Responsibility Narratives Protection of human subjects abstract Despite the significant literature as well as energy devoted to ethical review of research involving human subjects, little attention has been given to understanding the experiences of those who volunteer as human subjects. Why and how do they decide to participate in research? Is research participation viewed as a form of social responsibility or as a way of obtaining individual benefits? What if anything do research subjects feel they are owed for participation? And what do they feel that they owe the researcher? Drawing on in-depth individual interviews conducted in 2006 and 2007 with 41 subjects who participated in a variety of types of health research in Canada, this paper focuses on subject per- spectives on responsibility in research. Highlighting the range of ways that subjects describe their involvement in research and commitments to being a ‘good’ subject, we present a typology of narratives that sheds new light on the diverse meanings of research participation. These narratives are not mutually exclusive or prescriptive but are presented as ideal types typifying a set of circumstances and values. As such, they collectively illuminate a range of motivations expressed by human subjects as well as potential sources of vulnerability. The typology adds a new dimension to the literature in this area and has sig- nificant implications for researchers seeking more human-subject centred approaches to research recruitment and retention, as well as research ethics boards trying to better anticipate the perspectives of prospective participants. Ó 2013 Elsevier Ltd. All rights reserved. “Ethics is not only for the researcher, [it’s] for the people participating in the research too, you know.” Healthy female, biomedical research, HS804. Introduction A growing literature in research ethics now includes the per- spectives of human subjects alongside those of scholars, re- searchers and members of research ethics committees. Publications such as the recently established Journal of Empirical Research on Human Research Ethics feature articles on subjects’ experiences of research participation. Overall, there is increasing attention to topics such as reasons for or against participating (Albrecht et al., 2003) satisfaction with informed consent procedures (Corrigan, 2003), comprehension of risks (Kass & Sugarman, 1996), views on compensation (Hampson et al.., 2006) and sources of trust or mistrust in the research enterprise (McDonald, Townsend, Cox, Lafrenière, & Paterson, 2008). Fewer studies focus on understand- ing the meanings that human subjects themselves give to their research participation, whether these might differ from the taken- for-granted assumptions of researchers and members of research ethics boards (REBs) and, if so, how a more accurate understanding of human subjects’ perspectives might inform an evidence-based approach to ethical review and oversight (McDonald & Cox, 2009). A salient finding is that human subjects do not tend to conform to models of the researcheresubject relationship sug- gested in the literature but rather, “move through multiple roles and identities as part of the navigation through unfamiliar social territory, in order to establish a relationship in which they can feel socially comfortable and appropriately valued” (Morris & Balmer, 2006: 998). Language is a powerful arbiter of social reality. Hence a central issue in the scholarly literature is how the human subject is socially constructed in and through the discourse of academic research ethics as well as the actual process of research. Is the term ‘human subjects’ demeaning? Is ‘volunteers’ a more neutral and hence acceptable term? Or, given the growing importance of participatory * Corresponding author. Fax: þ1 604 822 8627. E-mail addresses: susan.cox@ubc.ca, suecox@exchange.ubc.ca (S.M. Cox). Contents lists available at ScienceDirect Social Science & Medicine journal homepage: www.elsevier.com/locate/socscimed 0277-9536/$ e see front matter Ó 2013 Elsevier Ltd. All rights reserved. http://dx.doi.org/10.1016/j.socscimed.2013.09.015 Social Science & Medicine 98 (2013) 224e231