Data transfer, values, and the holding together of clinical registry networks
2015 (English)In: Value practices in the life sciences and medicine / [ed] Isabelle Dussauge, Claes-Fredrik Helgesson, Francis Lee, Oxford: Oxford University Press, 2015, 224-246 p.Chapter in book (Refereed)
This chapter takes an interest in what counts as valuable in the coordinative practices of large-scale research. The focus is motivated by how values sometimes are understood as part of what can hold large research endeavours together. Here, however, the topic of values is brought to the surface without presuming them to be fully shared and part of what is holding the overall endeavour together. Empirically the focus is on clinical registries, which analyse data regarding a large number of patients visiting different clinics. Examining how data are gathered and transferred in three registries, the study found a rich and diversified set of arrangements in use. Each registry can be understood as accommodating a few different modes for the gathering and transferring of data, where each enacts somewhat dissimilar values. Hence, the registries examined here are not held together by exchanges repetitively reinforcing a single set of widely shared values.
Place, publisher, year, edition, pages
Oxford: Oxford University Press, 2015. 224-246 p.
science and technology studies (STS), organising of large-scale research, data transfer, moral economies in science, macro-actor, mode of data transfer, values as enacted, relational work in science
Other Social Sciences
IdentifiersURN: urn:nbn:se:liu:diva-114097ISBN: 9780199689583OAI: oai:DiVA.org:liu-114097DiVA: diva2:786967