The Role of Ethics in the Data Governance of Large Neuro-ICT Projects

dc.cclicenceCC-BY-NCen
dc.contributor.authorStahl, Bernd Carsten, 1968-en
dc.contributor.authorRainey, Stephenen
dc.contributor.authorHarris, Emmaen
dc.contributor.authorFothergill, B. Tyren
dc.date.acceptance2018-04-02en
dc.date.accessioned2018-05-01T09:37:23Z
dc.date.available2018-05-01T09:37:23Z
dc.date.issued2018-05-14
dc.descriptionThe file attached to this record is the author's final peer reviewed version.en
dc.description.abstractObjective We describe current practices of ethics-related data governance in large neuro-ICT projects, identify gaps in current practice, and put forward recommendations on how to collaborate ethically in complex regulatory and normative contexts. Materials and Methods We undertake a survey of published principles of data governance of large neuro-ICT projects. This grounds an approach to a normative analysis of current data governance approaches. Results Several ethical issues are well covered in the data governance policies of neuro-ICT projects, notably data protection and attribution of work. Projects use a set of similar policies to ensure users behave appropriately. However, many ethical issues are not covered at all. Implementation and enforcement of policies remain vague. Conclusion The data governance policies we investigated indicate that the neuro-ICT research community is currently close-knit and that shared assumptions are reflected in infrastructural aspects. This explains why many ethical issues are not explicitly included in data governance policies at present. With neuro-ICT research growing in scale, scope, and international involvement, these shared assumptions should be made explicit and reflected in data governance.en
dc.funderEuropean Commissionen
dc.identifier.citationStahl, BC., Rainey, S., Harris, E. and Fothergill, B.T. (2018) The Role of Ethics in the Data Governance of Large Neuro-ICT Projects. Journal of the American Medical Informatics Association, 25 (8), pp. 1099-1107en
dc.identifier.doihttps://doi.org/10.1093/jamia/ocy040
dc.identifier.issn1527-974X
dc.identifier.urihttp://hdl.handle.net/2086/16100
dc.language.isoenen
dc.peerreviewedYesen
dc.projectid720270en
dc.publisherOxford University Pressen
dc.researchgroupCentre for Computing and Social Responsibilityen
dc.researchinstituteCentre for Computing and Social Responsibility (CCSR)en
dc.subjectData governanceen
dc.subjectneuroscienceen
dc.subjectICTen
dc.subjectethicsen
dc.titleThe Role of Ethics in the Data Governance of Large Neuro-ICT Projectsen
dc.typeArticleen

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