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

J Am Med Inform Assoc. 2018 Aug 1;25(8):1099-1107. doi: 10.1093/jamia/ocy040.

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.

Publication types

  • Research Support, Non-U.S. Gov't
  • Review

MeSH terms

  • Computer Security / ethics
  • Ethics, Research*
  • Humans
  • Information Technology / ethics
  • Medical Informatics / ethics*
  • Neurosciences / ethics*