Making Knowledge in Boundary Infrastructures: Inside and Beyond a Database for Rare Diseases - Archive ouverte HAL Accéder directement au contenu
Article Dans Une Revue Science & Technology Studies Année : 2016

Making Knowledge in Boundary Infrastructures: Inside and Beyond a Database for Rare Diseases

Résumé

This paper provides an ethnographical study of the ways in which infrastructure matters in the production of knowledge in the social worlds of rare diseases. We analyse the role played by a relational database in this respect, which exists at the crossroads of a large and complex network of individuals, institutions, and practices. This database forms part of a " boundary infrastructure " , in which knowledge production constitutes one output of infrastructural work, that needs to be articulated with other kinds of activities and matters of concern. We analyse how members of the network negotiate the place and forms of knowledge production in relation to these other purposes, and highlight the political nature of the distinction between knowledge and information, which frames collective action. We also show how infrastructural inversion serves to articulate knowledge production with other forms of mobilisation, thereby shaping and reconfi guring the boundary infrastructure as a whole.
Fichier principal
Vignette du fichier
55920-58158-1-PB.pdf (221.36 Ko) Télécharger le fichier
Origine : Fichiers éditeurs autorisés sur une archive ouverte
Loading...

Dates et versions

hal-01399972 , version 1 (21-11-2016)

Identifiants

  • HAL Id : hal-01399972 , version 1

Citer

Eric Dagiral, Ashveen Peerbaye. Making Knowledge in Boundary Infrastructures: Inside and Beyond a Database for Rare Diseases. Science & Technology Studies, 2016, Special Issue on Knowledge Infrastructures: Part II, 29 (2), pp.44-61. ⟨hal-01399972⟩
424 Consultations
337 Téléchargements

Partager

Gmail Facebook X LinkedIn More