10.5281/zenodo.4588467
https://zenodo.org/records/4588467
oai:zenodo.org:4588467
Salles, Arleen
Arleen
Salles
Neuroethics and Philosophy in the Human Brain Project, Uppsala University.
Stahl, Bernd
Bernd
Stahl
Ethics Director in the Human Brain Project, De Montfort University.
Bjaalie, Jan
Jan
Bjaalie
Leader of the Neuroinformedicsmatics Platform in the Human Brain Project, University of Oslo.
Domingo-Ferrer, Josep
Josep
Domingo-Ferrer
Member of the Ethics Advisory Board in the Human Brain Project, Universitat Rovira i Virgili.
Rose, Nikolas
Nikolas
Rose
Leader of the Foresight Lab in the Human Brain Project, King's College London.
Rainey, Stephen
Stephen
Rainey
Researcher Awareness in the Human Brain Project, De Montfort University.
Spranger, Tade
Tade
Spranger
Member of the Ethics Advisory Board in the Human Brain Project, Rheinische Friedrich-Wilhems- University.
Opinion and Action Plan on Data Protection and Privacy - Ethics&Society, Human Brain Project
Zenodo
2021
ethics
society
action plan
data protection
data privacy
Human Brain Project
Evers, Kathinka
Kathinka
Evers
Leader of Ethics and Society in the Human Brain Project, Uppsala University.
Bitsch, Lise
Lise
Bitsch
Public Engagement and Dialogue in the Human Brain Project, the Danish Board of Technology Foundation.
Christen, Markus
Markus
Christen
Member of the Ethics Advisory Board in the Human Brain Project, University of Zurich.
Farisco, Michele
Michele
Farisco
Neuroethics and Philosophy in the Human Brain Project, Uppsala University.
2021-03-08
Other
10.5281/zenodo.4588466
https://zenodo.org/communities/hbp
Creative Commons Attribution 4.0 International
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)
European Commission
10.13039/501100000780
720270
Human Brain Project Specific Grant Agreement 1