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

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dc.contributor.author Stahl, Bernd Carsten, 1968- en
dc.contributor.author Rainey, Stephen en
dc.contributor.author Harris, Emma en
dc.contributor.author Fothergill, B. Tyr en
dc.date.accessioned 2018-05-01T09:37:23Z
dc.date.available 2018-05-01T09:37:23Z
dc.date.issued 2018-05-14
dc.identifier.citation Stahl, 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. 1099-1107 en
dc.identifier.issn 1527-974X
dc.identifier.uri http://hdl.handle.net/2086/16100
dc.description The file attached to this record is the author's final peer reviewed version. en
dc.description.abstract Objective 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.language.iso en en
dc.publisher Oxford University Press en
dc.subject Data governance en
dc.subject neuroscience en
dc.subject ICT en
dc.subject ethics en
dc.title The Role of Ethics in the Data Governance of Large Neuro-ICT Projects en
dc.type Article en
dc.identifier.doi https://dx.doi.org/10.1093/jamia/ocy040
dc.researchgroup Centre for Computing and Social Responsibility en
dc.peerreviewed Yes en
dc.funder European Commission en
dc.projectid 720270 en
dc.cclicence CC-BY-NC en
dc.date.acceptance 2018-04-02 en


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