Moving Evidence: Patients’ Groups, Biomedical Research, and Affects

Science, Technology, and Human Values 46 (4):815-838 (2021)
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Abstract

Research in science and technology studies has analyzed how patients’ groups engage in practices that connect biomedicine and patient experience in order to become involved in the shaping of biomedical research. However, there has been limited attention to the affective dimensions of such practices. Based on ethnographic fieldwork with a gynecological cancer patients’ group in Sweden, this article focuses on practices that aim to influence researchers and research institutions to prioritize biomedical gynecological cancer research. It analyzes how “affects” are woven through these practices and pays attention to the entanglements of affects, biomedical research, and lay experience they involve. The article explores the relation between the gynecological cancer patients’ group and biomedical research as a set of material-semiotic practices of “moving evidence.” These practices of moving evidence enact gynecological cancer as under-researched; collect and produce new “evidence”; “mobilize” the evidence at public events, in interactions with biomedical researchers, and in different online settings; and entangle affects with biomedical and experiential evidence to enact gynecological cancer biomedical research as a matter of concern.

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