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Published March 8, 2021 | Version v1
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Opinion and Action Plan on Data Protection and Privacy - Ethics&Society, Human Brain Project

  • 1. Neuroethics and Philosophy in the Human Brain Project, Uppsala University.
  • 2. Ethics Director in the Human Brain Project, De Montfort University.
  • 3. Leader of the Neuroinformedicsmatics Platform in the Human Brain Project, University of Oslo.
  • 4. Member of the Ethics Advisory Board in the Human Brain Project, Universitat Rovira i Virgili.
  • 5. Leader of the Foresight Lab in the Human Brain Project, King's College London.
  • 6. Researcher Awareness in the Human Brain Project, De Montfort University.
  • 7. Member of the Ethics Advisory Board in the Human Brain Project, Rheinische Friedrich-Wilhems- University.

Contributors

Project member:

Research group:

Researcher:

Work package leader:

  • 1. Leader of Ethics and Society in the Human Brain Project, Uppsala University.
  • 2. Public Engagement and Dialogue in the Human Brain Project, the Danish Board of Technology Foundation.
  • 3. Member of the Ethics Advisory Board in the Human Brain Project, University of Zurich.
  • 4. Neuroethics and Philosophy in the Human Brain Project, Uppsala University.

Description

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.

Notes

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)

Files

Opinion and Action Plan on Data Protection and Privacy_DOI.pdf

Files (1.8 MB)

Additional details

Funding

HBP SGA1 – Human Brain Project Specific Grant Agreement 1 720270
European Commission