From its inception, the Human Brain Project has pursued questions of data governance, and is in the process of refining a set of data policy principles and practices that foster research collaboration in accordance with principles and practices of responsible research and innovation (RRI). The Data Governance Working Group of the HBP, in collaboration with the UK ORBIT Project, hosted a two-day conference that brought together international expertise and cutting-edge research on the topic of data governance in large collaborative neuro-ICT projects. Our purpose in doing so was to clarify current practice, identify obstacles and barriers, and propose future ways of organising data governance, particularly in the context of the GDPR coming into effect.

Professors Marina Jirotka and Bernd Stahl introduced the ORBIT Project, and welcomed attendees and speakers to the conference. The opening keynote by Professor Karen Rommelfanger considered the role of ethics in transnational neuroscience data collaboration and raised the thematic issue of cross-cultural variance in perceptions of minds/brains/souls and personhood with respect to neuroscience. Jeff Muller, the HBP Technical Coordinator discussed ongoing developments in Data Policy and Infrastructure in the Human Brain Project, and was followed by Dr Greg Farber of the NIH and US Brain Initiative, who discussed the research utility of federal data repositories and differing approaches to data governance across these. Dr Steven Newhouse  (EMBL-EBI)spoke on secure data management, analysis, infrastructure and policy in an international context, and Professor Jan Bjaalie (Leader of the Neuroinformatics Subproject of the HBP) closed the day with a lecture encapsulating the history of neuroscience data sharing, with some lessons for present-day and future data sharing.

The second day began with a plenary by Dr Yoko Yamaguchi (RIKEN), which demonstrated the systems and processes in place for data sharing and knowledge integration in the Brain/MINDS Project. Saila Rinne of DG-CONNECT discussed the wider context of the European data economy, touching upon another thematic issue of the conference: the opportunities and challenges presented by attempting to balance Open Data with Data Protection and privacy concerns. The closing keynote by Professor Alan Evans introduced the Canadian Open Neuroscience Platform, and shifted discussions toward considering what a truly global neuroscience data infrastructure might look like, and how that could responsibly be achieved. Dr Hannah Maslen, Deputy Director of the Oxford Uehiro Centre for Practical Ethics chaired a panel of HBP Ethics Management members, which focussed mainly on how we responsibly approach the future of collaborative, international neuroscience research and data sharing.

Speaker Talks

Professor Marina Jirotka

Welcome to ORBIT

Dr. Karen Rommelfanger

Ethical consideration in transnational neuroscience data collaboration