States of Knowledge: The Co-Production of Science and Social Order

By Sheila Jasanoff | Go to book overview

8

Patients and scientists in French muscular dystrophy research

Vololona Rabeharisoa and Michel Callon


Introduction

Lay people are becoming more and more involved in scientific and technical debates and activities they are concerned with. Their intervention poses questions on the way scientific and technical issues are raised and decided upon, and on the nature of knowledge that is mobilized through this process. These debates relate to the shaping of a new regime of relations between science and society, that the notion of co-production aims at capturing.

Co-production translates an intertwined transformation of the relations between science and society. The first transformation manifests into the expanding list of actors who participate in scientific and technical debates and activities. In particular, the publicization of scientific controversies calls for an extended dialogue with all concerned groups, be they experts or lay people (Bailey et al. 1999; Barthe 2000; Brown 1992; Callon et al. 2001; Collins and Evans 2002; Kerr et al. 1998; Rip, forthcoming; Wynne 1996). In some cases, this dialogue ends up in actions that these concerned groups design and perform altogether. From this perspective, co-production refers to the emergence of collective action and the shaping of new identities. The second transformation relates to the shaping of objects of shared interest that could not have emerged without this collective action. This is a crucial point for certain concerned groups that try to bring into the public sphere problems that were formerly either unknown or ignored. From this perspective, co-production refers to knowledge and collective mobilization being conjointly produced.

In this chapter, we present a model of co-production that stands as an original example of the two perspectives mentioned above. This model has been developed by the French Muscular Dystrophy Association (Association Française contre les Myopathies or AFM). It combines: (i) the mobilization of research communities around neuromuscular diseases (MD) that were orphan hitherto; and (ii) the active participation of patients and their families in the orientation of biological and clinical research and the production of knowledge on these diseases. The originality of the AFM is its capacity to invent tools and procedures for organizing research and collective mobilization around MD.

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