Authors:Julia Swallow (University of Leeds)
Anne Kerr (University of Leeds)
Choon Key Chekar (University of Leeds)
Sarah Cunningham-Burley (University of Edinburgh)
Paper short abstract:
This paper explores how a multi-arm genomics trial is accomplished in everyday practices of cancer care by focussing on the active agency of tumour tissue. Practices of care operate alongside institutional arrangements to render experimental biomedical research 'workable' and 'bearable'.
Paper long abstract:
A new generation of adaptive, multi-arm clinical trials are developing in cancer research including those offering patients experimental treatments based on the genomic analysis of their cancer. Drawing on data from an ethnographic study of one such trial, including observations of out-patient clinic appointments, laboratory work, out-patient biopsy procedures, staff team meetings, and interviews with oncologists, research nurses and clinical trials assistants, this paper explores the work involved in making the trial part of everyday practices of patient care. We focus in particular on how practitioners deal with difficulties in accessing and analysing lively, changeable tissue; maintaining its value, and delivering results in a timely fashion. This includes a discussion of how the tissue becomes a symbolic extension of the patient: a key part of the social and material relations of cancer care. We also explore how the management of tissue is a means through which practitioners navigate patients' hopes and expectations. We conclude with a discussion of how these practices of care operate alongside institutional arrangements to render experimental biomedical research 'workable' and 'bearable' for patients' and practitioners' subjectivities and experiences of cancer care.
Intimate entanglements in science and technology