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The role of ethics in data governance of large neuro-ICT projects

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Item Type:Review
Title:The role of ethics in data governance of large neuro-ICT projects
Creators Name:Stahl, B.C., Rainey, S., Harris, E. and Fothergill, B.T.
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. 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. CONCLUSIONS: 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.
Keywords:Data Governance, Neuroscience, ICT, Ethics
Source:Journal of the American Medical Informatics Association
Publisher:Oxford University Press
Page Range:1099-1107
Date:August 2018
Official Publication:https://doi.org/10.1093/jamia/ocy040
PubMed:View item in PubMed

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