The Role of Ethics in the Data Governance of Large Neuro-ICT Projects
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.
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
Research Group:Centre for Computing and Social Responsibility