The role of ethics in data governance of large neuro-ICT projects. (14th May 2018)

• Record Type: Journal Article
• Authors: Stahl, Bernd Carsten; Rainey, Stephen; Harris, Emma; Fothergill, B Tyr
• Is Part Of: Journal of the American Medical Informatics Association. Volume 25:Number 8(2018)
• Page Start: 1099
• Page End: 1107
• Publication Date: 2018-05-14
• Subjects: data governance -- neuroscience -- ICT -- ethics; Medical informatics -- Periodicals; Information Services -- Periodicals; Medical Informatics -- Periodicals; Médecine -- Informatique -- Périodiques; Informatica; Geneeskunde; Informatique médicale; Computer network resources; Electronic journals; 610.285
• DOI: 10.1093/jamia/ocy040
• Languages: English
• ISSNs: 1067-5027

Abstract

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.