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Better governance, better access: practising responsible data sharing in the METADAC governance infrastructure

Murtagh, Madeleine J and Blell, Mwenza T and Butters, Olly W and Cowley, Lorraine and Dove, Edward S and Goodman, Alissa and Griggs, Rebecca L and Hall, Alison and Hallowell, Nina and Kumari, Meena and Mangino, Massimo and Maughan, Barbara and Mills, Melinda C and Minion, Joel T and Murphy, Tom and Prior, Gillian and Suderman, Matthew and Ring, Susan M and Rogers, Nina T and Roberts, Stephanie J and Van der Straeten, Catherine and Viney, Will and Wiltshire, Deborah and Wong, Andrew and Walker, Neil and Burton, Paul R (2018) 'Better governance, better access: practising responsible data sharing in the METADAC governance infrastructure.' Human Genomics, 12. ISSN 1479-7364

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Abstract

Background Genomic and biosocial research data about individuals is rapidly proliferating, bringing the potential for novel opportunities for data integration and use. The scale, pace and novelty of these applications raise a number of urgent sociotechnical, ethical and legal questions, including optimal methods of data storage, management and access. Although the open science movement advocates unfettered access to research data, many of the UK’s longitudinal cohort studies operate systems of managed data access, in which access is governed by legal and ethical agreements between stewards of research datasets and researchers wishing to make use of them. Amongst other things, these agreements aim to respect the reasonable expectations of the research participants who provided data and samples, as expressed in the consent process. Arguably, responsible data management and governance of data and sample use are foundational to the consent process in longitudinal studies and are an important source of trustworthiness in the eyes of those who contribute data to genomic and biosocial research. Methods This paper presents an ethnographic case study exploring the foundational principles of a governance infrastructure for Managing Ethico-social, Technical and Administrative issues in Data ACcess (METADAC), which are operationalised through a committee known as the METADAC Access Committee. METADAC governs access to phenotype, genotype and ‘omic’ data and samples from five UK longitudinal studies. Findings Using the example of METADAC, we argue that three key structural features are foundational for practising responsible data sharing: independence and transparency; interdisciplinarity; and participant-centric decision-making. We observe that the international research community is proactively working towards optimising the use of research data, integrating/linking these data with routine data generated by health and social care services and other administrative data services to improve the analysis, interpretation and utility of these data. The governance of these new complex data assemblages will require a range of expertise from across a number of domains and disciplines, including that of study participants. Human-mediated decision-making bodies will be central to ensuring achievable, reasoned and responsible decisions about the use of these data; the METADAC model described in this paper provides an example of how this could be realised.

Item Type: Article
Divisions: Faculty of Social Sciences > Institute for Social and Economic Research
Depositing User: Elements
Date Deposited: 28 Nov 2019 10:01
Last Modified: 28 Nov 2019 10:01
URI: http://repository.essex.ac.uk/id/eprint/26038

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