International data sharing in practice : new technologies meet old governance

Murtagh, M. , Turner, A., Minion, J. T., Fay, M. and Burton, P. R. (2016) International data sharing in practice : new technologies meet old governance. Biopreservation and Biobanking, 14(3), pp. 231-240. (doi: 10.1089/BIO.2016.0002) (PMID:27200470)

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The social structures that govern data/sample release aim to safeguard the confidentiality and privacy of cohort research participants (without whom there would be no data or samples) and enable the realization of societal benefit through optimizing the scientific use of those cohorts. Within collaborations involving multiple cohorts and biobanks, however, the local, national, and supranational institutional and legal guidelines for research (which produce a multiplicity of data access governance structures and guidelines) risk impeding the very science that is the raison d'etre of these consortia. We present an ethnographic study, which examined the epistemic and nonepistemic values driving decisions about data access and their consequences in the context of the pilot of an integrated approach to co-analysis of data. We demonstrate how the potential analytic flexibility offered by this approach was lost under contemporary data access governance. We identify three dominant values: protecting the research participant, protecting the study, and protecting the researcher. These values were both supported by and juxtaposed against a “public good” argument, and each was used as a rationale to both promote and inhibit sharing of data. While protection of the research participants was central to access permissions, decisions were also attentive to the desire of researchers to see their efforts in building population biobanks and cohorts realized in the form of scientific outputs. We conclude that systems for governing and enabling data access in large consortia need to (1) protect disclosure of research participant information or identity, (2) ensure the specific expectations of research participants are met, (3) embody systems of review that are transparent and not compromised by the specific interests of one particular group of stakeholders, and (4) facilitate data access procedures that are timely and efficient. Practical solutions are urgently needed. New approaches to data access governance should be trialed (and formally evaluated) with input from and discussion with stakeholders.

Item Type:Articles
Additional Information:The research and analysis leading to these results was supported by the Biobank Standardisation and Harmonisation for Research Excellence in the European Union (BioSHaRE-EU) program which received funding from the European Union Seventh Framework Programme (FP7/2007–2013) under grant agreement no 261433 and the Managing Ethico-social, Technical issues and Administration Data Access Committee (METADAC) which received funding from the Medical Research Council, Economic and Social Research Council and Wellcome Trust (MR/N01104X/1). The Data to Knowledge (D2K) Research Group is also supported by funding from: the European Union’s Seventh Framework Programme BBMRI-LPC (313010) (Biobanking and Biomolecular Resources Research Infrastructure—Large Prospective Cohorts); Medical Research Council and Wellcome Trust, 58READIE project (G1001799/2) (Realizing Easy Access to Data and Infrastructural Enhancement for the 1958 Birth Cohort Biomedical Resource) and ALSPAC project (102215/Z/13/Z), and the Welsh and Scottish Farr Institutes, MRC funded E-Health Informatics Research Centres (EHIRCs) (MR/K006525/1; MR/K007017/1).
Glasgow Author(s) Enlighten ID:Murtagh, Professor Madeleine
Authors: Murtagh, M., Turner, A., Minion, J. T., Fay, M., and Burton, P. R.
College/School:College of Social Sciences
Journal Name:Biopreservation and Biobanking
Publisher:Mary Ann Liebert
ISSN (Online):1947-5543
Published Online:20 May 2016
Copyright Holders:Copyright 2016, Mary Ann Liebert, Inc.
First Published:First published in Biopreservation and Biobanking 14(3):231-240.
Publisher Policy:Reproduced in accordance with the publisher copyright policy

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Project CodeAward NoProject NamePrincipal InvestigatorFunder's NameFunder RefLead Dept
190658The Scottish eHealth Informatics Research Centre (E-HIRCs).Jill PellMedical Research Council (MRC)MR/K007017/1HW - Public Health