Author:Karoliina Snell (University of Helsinki)
Paper short abstract:
The paper deals with visions, plans and blueprints of data management ‘architectures’ in biomedicine and personalized health. The focus of the analysis is how a ‘national genome server’ has emerged in to architectures and how it shapes the visions of health care.
Paper long abstract:
The prospects of 'personalized medicine' are seen to be embedded in collection and combination of masses of genomic data with many other types of personal health data (patient records with laboratory measurements data, life style surveys etc.) and in circulation and management of such massive data in both research and clinical settings. In this paper I analyze visions, plans and blueprints of data management 'architectures' that are claimed to enable the functioning of future data-driven medicine. The focus of the analysis is a 'national genome server': we analyze how such an imaginary entity appeared in the visions and has been argued for in the prospective landscape of personalized medicine in Finland. The research data consists of 1) graphic charts presented by policymakers and experts when organizing, designing and discussing the 'architecture' of data management in biomedicine and health care, and 2) health and innovation policy discourses which provide a context for these charts. Theoretically, the discussion is based on ANT, Jasanoff's ideas of sociotechnical imaginaries and Helén's idea of experimentality where practices entwine together with scientific, political and economic expectations of biomedicine. Deploying these approaches, the paper addresses the following question: How does the 'national genome server' configure in and effect the network of reasoning and practices around the making of a national system of health data management in Finland? What are the technical and political aspects and functions of the 'national genome server' and what are its implications to health care?
Bioinformation management in data driven medicine