Volunteer Research Subjects’ Experience of Participation in Research on a Novel Diagnostic Technology for Breast Cancer

Abstract

Although volunteer research subjects play a crucial role in the development of new health technologies, there have been relatively few in-depth studies of what participation in research means to them, and how they manage and make sense of the research encounter. Using constructivist perspectives we analyze data from 15 United States-based women taking part in tests of prototype instrumentation with potential for cancer diagnosis, comparing their responses with findings from a larger study (using the same interview methodology) on United Kingdom-based women participating in a similar program. For both groups the prime concerns emerging at interview related to the social rather than the physical challenges of participation. Both deployed similar discursive strategies to manage these tensions.We suggest that, at least within the limits of the kind of low-risk, nontherapeutic research studied, lessons can be drawn for research management, particularly the key role of the researcher-researched working relationship in assuring mutually satisfactory outcomes.