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

机译：移动证据：患者的群体，生物医学研究和影响

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摘要

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 (1) enact gynecological cancer as under-researched; (2) collect and produce new "evidence"; (3) "mobilize" the evidence at public events, in interactions with biomedical researchers, and in different online settings; and (4) entangle affects with biomedical and experiential evidence to enact (a lack of) gynecological cancer biomedical research as a matter of concern.
机译：科学技术研究的研究分析了患者的团体如何从事连接生物医生和患者经验的实践，以便参与生物医学研究的塑造。然而，有限关注这种做法的情感方面。本文基于瑞典妇科癌症患者集团的民族型癌症群落侧重于旨在影响研究人员和研究机构以优先考虑生物医学妇科癌症研究的实践。它分析了如何通过这些实践编织的“影响”，并注意影响其涉及的影响，生物医学研究的纠缠和涉及的营造体验。本文探讨了妇科癌症患者群体与生物医学研究之间的关系，作为“移动证据”的一系列材料 - 符号惯例。这些动作证据的做法（1）为研究后的妇科癌症制定; （2）收集并产生新的“证据”; （3）“动员”在与生物医学研究人员的互动中的公共活动中的证据，以及在不同的在线环境中; （4）纠缠影响生物医学和经验证据，以令人担忧的问题来制定（缺乏）妇科癌症生物医学研究。

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