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

Journal of the American Medical Informatics Association : JAMIA
Bernd Carsten StahlB Tyr Fothergill

Abstract

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. 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. 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. 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.

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Citations

Apr 16, 2019·Frontiers in Human Neuroscience·Bernd Carsten StahlInga Ulnicane
May 22, 2019·Frontiers in Neuroinformatics·B Tyr FothergillInga Ulnicane
Jan 7, 2021·Journal of the American Medical Informatics Association : JAMIA·Elizabeth MontagueDavid Danks
Jul 21, 2021·Methods of Information in Medicine·John H HolmesJason H Moore

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