Extending experimentation: oncology's fading boundary between research and care

• Published in: New genetics and society Vol. 37; no. 3; pp. 207 - 226
• Main Authors: Cambrosio, Alberto, Keating, Peter, Vignola-Gagné, Etienne, Besle, Sylvain, Bourret, Pascale
• Format: Journal Article
• Language: English
• Published: Abingdon Routledge 03.07.2018; Taylor & Francis Ltd; Taylor & Francis (Routledge); Taylor & Francis Group
• Subjects: Bioethics; Biology; clinical care; clinical research; Experiments; Genetics; genomics; Historians; Humanities and Social Sciences; molecular tumor boards; Oncology; Social scientists; Sociology; total cancer care
• ISSN: 1463-6778; 1469-9915
• DOI: 10.1080/14636778.2018.1487281

Historians and social scientists view the distinction between research and care as diachronically and synchronically contingent, rather than transcendental, as is often the case in bioethics. Comparing how the notion of total care was used in the 1950s with present-day use of that same term by genomically informed oncology programs, the paper argues that the distinction between research and care needs: to be historicized, by examining its repeated emergence and re-definition, and the shifting relations between these two "ideal-typical" components; and to be problematized, by paying attention to the entities, practices, and institutions that are constitutive of the successive regimens that have punctuated oncology's development. Shifting to contemporary activities, the paper examines how the recent massive injection of molecular biology and high-throughput genomic technologies in the field of oncology has been accompanied by a reshuffling of the research/care distinction, a process that is leading to new forms of "experimental care".