Seeing Is Knowing

This paper considers the way in which technology of relational databases is used to produce, articulate, and share knowledge and information on a set of diseases qualified as “rare” on a European scale. Looking back at the genesis and evolution of the socio-technical apparatus over three decades, it analyzes its material and symbolic foundations. The authors’ ethnographic study highlights the importance of negotiation, co-design, and sharing of “views” on the data. All of these are essential operations, determining the work of a variety of actors. They also help to maintain cooperation and ensure that knowledge deemed to be reliable and relevant is put into circulation. This process of construction of “views” is interpreted as an investment in form, the dynamics of which reflect original and evolving ways of working, knowing, and engaging with regard to rare diseases, insofar as it is involved in shaping them. More generally, this contribution to a sociology of databases highlights the fecundity of a view-based approach in order to understand the integration of multiple perspectives held by diverse social worlds.