Ethics is for human subjects too: participant perspectives on responsibility in health research

Social Science & Medicine
Susan M Cox, Michael McDonald

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 perspectives 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 vul...Continue Reading

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Citations

Dec 19, 2015·Regenerative Medicine·Michelle G J L HabetsAnnelien L Bredenoord
Sep 4, 2015·Ciência & saúde coletiva·Elizabeth Peter
Jun 9, 2017·Journal of Empirical Research on Human Research Ethics : JERHRE·Emily ChristofidesKieran O'Doherty
Sep 21, 2019·The Journal of International Medical Research·Zhu-Heng WangJun Gang
Mar 9, 2019·The Canadian Journal of Nursing Research = Revue Canadienne De Recherche En Sciences Infirmières·Phyllis MontgomeryAngela Underhill
Sep 17, 2019·Journal of Empirical Research on Human Research Ethics : JERHRE·Susan M CoxAnne Townsend
Oct 6, 2017·Journal of the Intensive Care Society·Natalie PattisonTim Walsh
Jul 24, 2021·Annals of Behavioral Medicine : a Publication of the Society of Behavioral Medicine·Chelsea L RatcliffKimberly A Kaphingst

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