Ethical issues in the data lifecycle. Source: Responsible Data Governance of Big Neuroscience Data

William Knight

Recent paper from the Human Brain Project’s (HBP) Ethics Support team members Responsible Data Governance of Big Neuroscience Data is an attempt to conceptualise an approach to data governance which implements the tenets of Responsible Research and Innovation (RRI) into data governance processes within international neuroscience. This paper emerges from a great deal of hard work by people across the HBP whose job it is to ensure we handle our data in an appropriate manner. This is not necessarily a simple nor uncontroversial task. How a project chooses to implement data governance and data protection strategies says a lot about its perception of responsibility with regards to data and what it believes the impact of that data can be.

Data Governance in Practice

Many of the conclusions that the paper draws about how data can be handled responsibly, and the suggestions it goes on to make, are drawn from the authors’ experiences as part of the Ethics Support Work Package in the Human Brain Project (some facets of which have been covered on this blog before). In particular, the managing of the Data Governance research in the project, the implementation of the Data Governance Working Group, the provision of the Data Protection Officer and the managing of the Ethics Compliance process were pivotal in developing the framework around which the paper hangs.

This paper emphasises the importance of data governance in research, and in particular its importance when handling big data in the field of neuroscience where additional ethical questions might arise. Using the Human Brain Project as a case study, the paper discusses the various challenges facing researchers and scientists in their handling of large amounts of neuroscience data. Challenges such as provisions for the handling of personal human data from hospital patients and the data protection concerns which must be considered in that enterprise, or the handling of data derived from humans or animals from outside the jurisdiction of the European Union. These are complex and often unprecedented issues which require ethical engagement from a multitude of parties across a research project.

Inclusive and Discursive

The paper concludes that ethical issues can be integrated into neuroscience big data governance through the development of “responsible data governance”. This novel approach requires inclusive and discursive ethical approaches, and the incorporation of the tenets of RRI into “collaboratively developed parameters and frameworks”. The approach to the implementation of responsible data governance must be dynamic, responsive to outcomes and concerns raised as part of the ongoing dialogues with those actors within the project to which it is applied. Responsible data governance of neuroscience big data necessarily relies upon discourse and responsible parties must consider the entire data lifecycle in those discussions.

Next Steps

In terms of next steps, we recommend that future research should address the integration of technical aspects of responsible data governance such as cyber and data security. Additionally, methods to begin to approach international “ethical data” standards might help to assuage the relative vagueness of the ethical status of data.

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