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

Review (2018)

Authors

Bernd Carsten Stahl De Montfort University
S. Rainey University of Oxford
Emma Harris Max-Delbrück-Center for Molecular Medicine and Charité Universitätsmedizin Berlin
B. Tyr Fothergill De Montfort University
Affiliation
External organisation
Ethics ICT Neuroscience Data governance
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Published Date

2018

Language

English

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External organisation

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.