Introduction: toward a context-based ethics for social research in health

The idea for this Special Issue was born over dinner in a Greek restaurant, and each of the authors had just presented their work at a conference on narrative-based medicine in Cambridge, UK, sponsored by the BMJ.

Abstract

The idea for this Special Issue was born over dinner in a Greek restaurant. It was 2001 and each of us had just presented our work at a conference on narrative-based medicine in Cambridge, UK, sponsored by the BMJ. Although different issues were raised from the audience about our respective papers and others at the conference, many seemed to turn on particular questions: Were informed consent procedures followed properly? Were they sufficient to protect the confidentiality of vulnerable research participants who told lengthy narratives about their lives? Who ‘owns’ the stories collected during fieldwork? It is no accident that such questions should arise at a conference attended by health professionals. Institutional review boards (committees go by different names in different countries) began in the wake of massive abuses of power involving complicit physicians and nurses (Tuskegee, Nuremburg). But we sensed a narrow, individualistic and rights-oriented thrust to the comments. Like organs stolen from corpses in medical experiments, there was even a suggestion that informants’ stories had been appropriated by researchers – used for academic ends, rather than to benefit patients. The model of research ethics was medico-centric, appropriate for clinical trials perhaps, but bearing little relationship to ethnographic and narrative forms of social research. As seasoned researchers in sociology and anthropology, we had watched a medical model of ethics increase in influence on US university and hospital committees, composed largely of clinical researchers and others working in the experimental paradigm. We had witnessed the routinization of good intentions: standardized and scripted legalistic informed consent