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Data governance and informed consent in the Human Brain Project
European Institute for Theoretical Neuroscience (EITN), Paris, France
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.