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Value Practices in the Life Sciences and Medicine$
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Isabelle Dussauge, Claes-Fredrik Helgesson, and Francis Lee

Print publication date: 2015

Print ISBN-13: 9780199689583

Published to Oxford Scholarship Online: April 2015

DOI: 10.1093/acprof:oso/9780199689583.001.0001

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Data transfer, values, and the holding together of clinical registry networks

Data transfer, values, and the holding together of clinical registry networks

(p.224) 12 Data transfer, values, and the holding together of clinical registry networks
Value Practices in the Life Sciences and Medicine

Claes-Fredrik Helgesson

Linus Johansson Krafve

Oxford University Press

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 are sometimes understood as part of what can hold large research endeavours together. Here, however, the topic of values is raised without presuming those values to be fully shared and part of what is holding the overall endeavour together. Empirically the focus is on clinical registries, which analyse data relating to 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 transfer of data, where each enacts somewhat dissimilar values. Hence, the registries examined here are not bound together by exchanges repetitively reinforcing a single set of widely shared values.

Keywords:   STS, organizing large-scale research, moral economies, macro-actors, data transfer, values as enacted, relational work

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