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'Pop-Up' Governance: Developing Internal Governance Frameworks for Consortia: the Example of UK10K

Overview
Publisher Biomed Central
Specialty Medical Ethics
Date 2015 Sep 29
PMID 26412243
Citations 4
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Abstract

Innovations in information technologies have facilitated the development of new styles of research networks and forms of governance. This is evident in genomics where increasingly, research is carried out by large, interdisciplinary consortia focussing on a specific research endeavour. The UK10K project is an example of a human genomics consortium funded to provide insights into the genomics of rare conditions, and establish a community resource from generated sequence data. To achieve its objectives according to the agreed timetable, the UK10K project established an internal governance system to expedite the research and to deal with the complex issues that arose. The project's governance structure exemplifies a new form of network governance called 'pop-up' governance. 'Pop-up' because: it was put together quickly, existed for a specific period, was designed for a specific purpose, and was dismantled easily on project completion. In this paper, we use UK10K to describe how 'pop-up' governance works on the ground and how relational, hierarchical and contractual governance mechanisms are used in this new form of network governance.

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References
1.
Willem A, Gemmel P . Do governance choices matter in health care networks?: an exploratory configuration study of health care networks. BMC Health Serv Res. 2013; 13:229. PMC: 3727985. DOI: 10.1186/1472-6963-13-229. View

2.
Kaye J, Hawkins N . Data sharing policy design for consortia: challenges for sustainability. Genome Med. 2014; 6(1):4. PMC: 3978924. DOI: 10.1186/gm523. View

3.
Joly Y, Dove E, Knoppers B, Bobrow M, Chalmers D . Data sharing in the post-genomic world: the experience of the International Cancer Genome Consortium (ICGC) Data Access Compliance Office (DACO). PLoS Comput Biol. 2012; 8(7):e1002549. PMC: 3395593. DOI: 10.1371/journal.pcbi.1002549. View

4.
Fortin S, Pathmasiri S, Grintuch R, Deschenes M . 'Access arrangements' for biobanks: a fine line between facilitating and hindering collaboration. Public Health Genomics. 2010; 14(2):104-14. DOI: 10.1159/000309852. View

5.
Simon B, Klandermans B . Politicized collective identity. A social psychological analysis. Am Psychol. 2001; 56(4):319-31. View