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dc.contributor.authorFothergill, B. Tyr
dc.contributor.authorKnight, William
dc.contributor.authorStahl, Bernd Carsten, 1968-
dc.contributor.authorUlnicane, Inga
dc.date.accessioned2019-05-07T10:59:00Z
dc.date.available2019-05-07T10:59:00Z
dc.date.issued2019-04-24
dc.identifier.citationFothergill, B. T., Knight, W., Stahl, B.C., Ulnicane, I. (2019) Responsible Data Governance of Neuroscience Big Data. Frontiers in Neuroinformatics, 13,en
dc.identifier.urihttps://www.frontiersin.org/article/10.3389/fninf.2019.00028
dc.identifier.urihttps://www.dora.dmu.ac.uk/handle/2086/17775
dc.descriptionOpen access article.en
dc.description.abstractCurrent discussions of the ethical aspects of big data are shaped by concerns regarding the social consequences of both the widespread adoption of machine learning and the ways in which biases in data can be replicated and perpetuated. We instead focus here on the ethical issues arising from the use of big data in international neuroscience collaborations. Neuroscience innovation relies upon neuroinformatics, large-scale data collection and analysis enabled by novel and emergent technologies. Each step of this work involves aspects of ethics, ranging from concerns for adherence to informed consent or animal protection principles and issues of data re-use at the stage of data collection, to data protection and privacy during data processing and analysis, and issues of attribution and intellectual property at the data-sharing and publication stages. Significant dilemmas and challenges with far-reaching implications are also inherent, including reconciling the ethical imperative for openness and validation with data protection compliance and considering future innovation trajectories or the potential for misuse of research results. Furthermore, these issues are subject to local interpretations within different ethical cultures applying diverse legal systems emphasising different aspects. Neuroscience big data require a concerted approach to research across boundaries, wherein ethical aspects are integrated within a transparent, dialogical data governance process. We address this by developing the concept of “responsible data governance,” applying the principles of Responsible Research and Innovation (RRI) to the challenges presented by the governance of neuroscience big data in the Human Brain Project (HBP).en
dc.language.isoenen
dc.publisherFrontiers Mediaen
dc.subjectdata governanceen
dc.subjecthuman brain projecten
dc.subjectethicsen
dc.subjectneuroscienceen
dc.subjectbig dataen
dc.subjectRRIen
dc.titleResponsible Data Governance of Neuroscience Big Dataen
dc.typeArticleen
dc.identifier.doihttps://doi.org/10.3389/fninf.2019.00028
dc.peerreviewedYesen
dc.funderEuropean Union (EU) Horizon 2020en
dc.projectid720270 and 785907 (HBP SGA1 and SGA2)en
dc.cclicenceCC-BY-NCen
dc.date.acceptance2019-03-29
dc.researchinstituteCentre for Computing and Social Responsibility (CCSR)en
dc.funder.otherThis work was supported by the European Union’s Horizon 2020 Research and Innovation Framework Programme under Grant Agreement Nos. 720270 and 785907 (HBP SGA1 and SGA2).en


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