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Opinion and Action Plan on Data Protection and Privacy - Ethics&Society, Human Brain Project

Salles, Arleen; Stahl, Bernd; Bjaalie, Jan; Domingo-Ferrer, Josep; Rose, Nikolas; Rainey, Stephen; Spranger, Tade

Project member(s)
Christen, Markus
Research group(s)
Farisco, Michele
Bitsch, Lise
Work package leader(s)
Evers, Kathinka

Abstract:  A fuller understanding of the human brain, better diagnoses and treatment of brain disorders, as well as the development of new brain-like technologies are all goals of the Human Brain Project (HBP). Realizing these goals requires the collection, storage, curation, and analysis of data of various sorts over extended periods of time. Securing privacy interests and advancing data protection measures are key concerns of the HBP. The HBP needs to comply with national and European data protection legislation and must go beyond existing legal protections and show ethical sensitivity to privacy concerns, even when such concerns fall outside regulatory frameworks. Recommendations made, in this opinion and action plan, includes measures to ensure data protection in data governance structures, adopting a privacy model when anonymizing data, privacy by design in systems development, exploring ICO tools for privacy management and data protection and the promotion of trust and transparency.

The research leading to this result has received funding from the European Union's Horizon 2020 Research and Innovation Programme under Grant Agreement No. 720270 (HBP SGA1)
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