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

Abstract

ObjectiveWe 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.MethodsWe 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.ResultsSeveral 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.ConclusionsThe 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.

Beyond Research Ethics: Dialogues in Neuro-ICT Research

“…The further success of international neuroscience research will depend to a large extent on collaboration between different projects, labs and researchers. This, as we have argued elsewhere, will require the incorporation of some shared understandings of ethical issues (Stahl et al, 2018). At the same time, the regulatory and ethical issues of the different projects will differ and call for appropriate bespoke solutions.…”

Responsible Data Governance of Neuroscience Big Data

“…Ethics Support is a work package within the Ethics and Society subproject of the HBP that includes data governance-related tasks such as compliance, ethics-related data governance, and data protection. These tasks are part of the greater HBP ethics support infrastructure, designed to address the ethical and social issues that arise in the project (Stahl et al, 2016, 2018). Here we will detail some ethical issues raised by the handling of neuroscience big data within the HBP, and the measures implemented to address them.…”

“…Our case study, the HBP, is large, complex, collaborative, and international. It, therefore, possesses attributes requiring special consideration when incorporating ethical frameworks, including a need for a non-imperialist, dialogical approach; cross-disciplinary utility; and sensitivity to social and cultural issues at multiple levels (Aicardi et al, 2018b; Stahl et al, 2018, 2019). In applying RRI within the HBP, the approach to ethical issues has been characterised by dialogues, flexible, and responsive to project needs (Stahl et al, 2016; Aicardi et al, 2018a).…”

“…We define data governance as a strategy for the overall management of the availability, usability, integrity, quality, and security of data in order to ensure that the potential of the data is maximised whilst regulatory and ethical compliance is achieved within a specific organisational context. To address data governance within the HBP, we have operationalised the described theoretical approach and incorporated the principles of RRI into the data governance policies, processes, and infrastructure of the project through the establishment of dialogues and shared responsibility (Stahl et al, 2018, 2019).…”

Responsible Data Governance in Projects: Applying a Responsible Research and Innovation (RRI) Framework

“… Members of Ethics Support also take part in internal engagement through the Data Governance Working Group, a project-wide assembly developing data governance and management policy for the entire HBP(B. C. Stahl et al 2018).…”