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Lookup NU author(s): Professor Madeleine Murtagh, Dr Mwenza BlellORCiD, Dr Olly ButtersORCiD, Dr Lorraine Cowley, Dr Nina Hallowell, Dr Joel MinionORCiD, Dr Stephanie RobertsORCiD, Emeritus Professor Paul BurtonORCiD
This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).
Abstract: BackgroundGenomic 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.FindingsUsing 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.
Author(s): Murtagh MJ, Blell MT, Butters OW, Cowley L, Dove ES, Goodman A, Griggs RL, Hall A, Hallowell N, Kumari M, Mangino M, Maughan B, Mills MC, Minion JT, Murphy T, Prior G, Suderman M, Ring SM, Rogers NT, Roberts SJ, Van der Straeten C, Viney W, Wiltshire D, Wong A, Walker N, Burton PR
Publication type: Article
Publication status: Published
Journal: Human Genomics
Year: 2018
Volume: 12
Online publication date: 26/04/2018
Acceptance date: 06/04/2018
Date deposited: 09/08/2018
ISSN (electronic): 1479-7364
Publisher: BioMed Central Ltd
URL: https://doi.org/10.1186/s40246-018-0154-6
DOI: 10.1186/s40246-018-0154-6
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