Pillayre Héloïse, Besle Sylvain
Centre Léon Bérard, Département SHS, Lyon, France.
Université Claude Bernard Lyon 1, Lyon, France.
Front Sociol. 2023 Aug 30;8:1148639. doi: 10.3389/fsoc.2023.1148639. eCollection 2023.
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.
本文旨在理解为何医学领域相关人士近期公布了罕见和极其罕见癌症的清单。基于对这些清单上的主要相关人士的访谈以及对发表有这些清单的医学文章的分析，研究了四份关于罕见和极其罕见癌症的清单。本文认为，这些清单构成了边界对象，其目的是应对精准医学带来的组织挑战，这意味着要增加各类相关人士之间的协调工作。因此，我们的研究有助于更好地理解边界对象递归标准化过程的运作方式，并且通过分析在专业原则和疾病分类学原则交叉点上稀有性类别是如何构建的，揭示了当代精准医学实践所依赖的生物医学、组织和政治层面的相互交织。
