What rare cancers have in common. The making of lists of (very) rare cancers and the coordination of medical work

This article aims to understand why medical actors recently published lists of rare and very rare cancers. It studies four lists of rare and very rare cancers based on interviews with the main actors on these lists and an analysis of medical articles in which these lists were published. It argues th...

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Published inFrontiers in sociology Vol. 8; p. 1148639
Main Authors Pillayre, Héloïse, Besle, Sylvain
Format Journal Article
LanguageEnglish
Published Frontiers Media S.A 30.08.2023
Subjects
coordination
lists
oncology
precision medicine
rare cancers
rarity
Sociology
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Summary:This article aims to understand why medical actors recently published lists of rare and very rare cancers. It studies four lists of rare and very rare cancers based on interviews with the main actors on these lists and an analysis of medical articles in which these lists were published. It argues that these lists constitute boundary objects whose aim is to deal with the organizational challenges raised by precision medicine, which imply increasing the coordination work between various types of actors. Our work therefore allows a better understanding of the functioning of the recursive standardization process of a boundary object and, by analyzing how the category of rarity is built at the intersection of both professional and nosographic principles, shows the intertwining of the biomedical, organizational, and political aspects on which rests the practice of contemporary precision medicine.
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Reviewed by: Julia Swallow, University of Edinburgh, United Kingdom; Clémence Pinel, University of Copenhagen, Denmark
Edited by: Luca Chiapperino, Université de Lausanne, Switzerland
ISSN:2297-7775
2297-7775
DOI:10.3389/fsoc.2023.1148639