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

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cam.issuedOnline2018-04-26
dc.contributor.authorMurtagh, Madeleine J
dc.contributor.authorBlell, Mwenza T
dc.contributor.authorButters, Olly W
dc.contributor.authorCowley, Lorraine
dc.contributor.authorDove, Edward S
dc.contributor.authorGoodman, Alissa
dc.contributor.authorGriggs, Rebecca L
dc.contributor.authorHall, Alison
dc.contributor.authorHallowell, Nina
dc.contributor.authorKumari, Meena
dc.contributor.authorMangino, Massimo
dc.contributor.authorMaughan, Barbara
dc.contributor.authorMills, Melinda C
dc.contributor.authorMinion, Joel T
dc.contributor.authorMurphy, Tom
dc.contributor.authorPrior, Gillian
dc.contributor.authorSuderman, Matthew
dc.contributor.authorRing, Susan M
dc.contributor.authorRogers, Nina T
dc.contributor.authorRoberts, Stephanie J
dc.contributor.authorVan der Straeten, Catherine
dc.contributor.authorViney, Will
dc.contributor.authorWiltshire, Deborah
dc.contributor.authorWong, Andrew
dc.contributor.authorWalker, Neil
dc.contributor.authorBurton, Paul R
dc.contributor.orcidBlell, Mwenza [0000-0002-6794-3826]
dc.date.accessioned2018-09-11T17:31:12Z
dc.date.available2018-09-11T17:31:12Z
dc.date.issued2018-04-26
dc.description.abstractBACKGROUND: 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.
dc.format.mediumElectronic
dc.identifier.doi10.17863/CAM.27538
dc.identifier.eissn1479-7364
dc.identifier.issn1473-9542
dc.identifier.urihttps://www.repository.cam.ac.uk/handle/1810/280170
dc.languageeng
dc.language.isoeng
dc.publisherSpringer Science and Business Media LLC
dc.publisher.urlhttp://dx.doi.org/10.1186/s40246-018-0154-6
dc.rightsAttribution 4.0 International
dc.rights.urihttps://creativecommons.org/licenses/by/4.0/
dc.subjectData Access Committee (DAC)
dc.subjectData access
dc.subjectData ethics
dc.subjectData governance
dc.subjectEthnography
dc.subjectGovernance
dc.subjectInterdisciplinarity
dc.subjectParticipant involvement
dc.subjectQualitative research
dc.subjectBig Data
dc.subjectBiomedical Research
dc.subjectDatabases, Genetic
dc.subjectGenomics
dc.subjectGenotype
dc.subjectHumans
dc.subjectInformation Dissemination
dc.titleBetter governance, better access: practising responsible data sharing in the METADAC governance infrastructure.
dc.typeArticle
dcterms.dateAccepted2018-04-06
prism.issueIdentifier1
prism.publicationDate2018
prism.publicationNameHum Genomics
prism.startingPage24
prism.volume12
pubs.funder-project-idWellcome Trust (209829/Z/17/Z)
rioxxterms.licenseref.startdate2018-04-26
rioxxterms.licenseref.urihttp://www.rioxx.net/licenses/all-rights-reserved
rioxxterms.typeJournal Article/Review
rioxxterms.versionofrecord10.1186/s40246-018-0154-6

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