Data governance and informed consent in the Human Brain Project

European Institute for Theoretical Neuroscience (EITN), Paris, France

Dec. 11, 2017 – Dec. 12, 2017

Data on patients and research participants, stored in hospitals around the world, provide a valuable resource for research. The Human Brain Project (HBP) hopes to use these valuable health databases for its research on providing more accurate diagnoses and personalized medicine for brain diseases. The data could for example be brain images, previously received therapies, mental evaluation, genetic information, etc. However, such research raises issues of data governance, informed consent, trust and societal values.

In this seminar, leading neurologists, personal data managers, experts in bioethics and patient representatives come together to discuss the challenges setting up and participating in ‘big data’ research as suggested by the HBP. In particular the seminar is focused on a discussion of the following questions:

  • Which options exists for obtaining informed consent in big data research?
  • What can we learn from biobanks and brain image databases about data governance?
  • How do we empower of data subjects in ‘big data research’?
  • Which options lies in privacy by design?
  • How can informed consent procedures be improved for unconscious people?
  • How do we balance data protection and informed consent against other societal values?
  • How can we develop standard procedures for collecting and researching on clinical data in big data projects?

The aim of the seminar is to initiate a dialogue between HBP scientists, HBP data managers and external experts and stakeholders, on how to improve data governance and informed consent in big data research projects like HBP. The outcome of the seminar will include recommendations for the research community and concrete input to the HBP Standard Operating Procedures (SOPs) and data policy manuals.

The seminar will take place on December 11t and December 12th at the European Institute for Theoretical Neuroscience (EITN), 74 Rue du Faubourg Saint-Antoine, 75012 Paris, France. Please download the full invite for details on the speakers and programme: Icon Programme (911.0 KB)

To sign up please send an email to Project Manager Karen Riisgaard: kr@tekno.dk.  Deadline for signing up is November 11th, 2017.  Please indicate if you would like to take part in the dinner Monday evening.

Organizers:

The Danish Board of Technology Foundation, led by director Lars Klüver; HBP Ethics Management Group at De Montfort University, led by Prof. Bernd Stahl, both being part of the Subproject 12 (SP12) Ethics and Society of the HBP; European Institute for Theoretical Neuroscience (EITN).