Ethics Coordination
We coordinated the management of ethical issues across the Human Brain Project. This includes the interaction with the European Commission and its ethics reviewers for ethics checks, ethics reviews, or ethics audits, and coordinating all work on ethics across the Project.
This work also included the Ethics Rapporteur Programme, and various communications activities to promote Responsible Research and Innovation (RRI for short) in the Human Brain Project.
Coordinating Ethics across the HBP
We built capacities to enable a responsible research and innovation culture within the Human Brain Project, EBRAINS, and the neuroscience community.
Compliance Management
Compliance Management was one aspect of the work undertaken by the Human Brain Project to ensure that our activities comply with European ethical principles and corresponding regulatory standards. These efforts overlapped with Data Governance and Data Protection, and both the Data Protection Officer and the Compliance Manager sit on the HBP Data Governance Working Group.
The Compliance Manager worked directly with Primary Investigators in the HBP and external data providers to ensure that the ethics compliance status of all data integrated into the HBP infrastructure is acceptable and that evidence of acceptability is available to appropriate parties both within and outside the Project.
Compliance Management
Data Protection in the Human Brain Project
The General Data Protection Regulation (GDPR) requires the designation of a Data Protection Officer (DPO) in some circumstances. Given the scope and categories of personal data processed in the HBP, the Project appointed a DPO.
The DPO is a professional in the field of data protection and works with HBP Partners to facilitate compliance with the GDPR. The role of DPO includes consultation on data processing activities and providing advice and recommendations on compliance with applicable laws. In particular, the DPO assisted in carrying out data protection impact assessments (DPIA), among other compliance tasks.
In addition to data protection compliance, the DPO had a communication function and consulted with data subjects, HBP Partners and leadership, and supervisory authorities. The DPO was also a part of the Data Governance Working Group.
Data Protection
Data Governance
Data Governance is the overall management of the availability, usability, integrity and security of data used in an organisation. A sound data governance program ensures that data is consistent and trustworthy. Concretely, Data Governance in the Human Brain Project included multiple groups with responsibility for developing, approving, organising and implementing policies, procedures and standards for the most effective use of the Human Brain Project’s structured and unstructured data.
Data Governance
Ethics Rapporteurs Programme
We worked to deepen the understanding of potential ethical and social implications of research and other work by the academics, scientist and engineers across the Human Brain Project. Find out who was part of this work!
Ethics Rapporteur Programme
Capacity Development
The Human Brain Project’s Capacity Development Committee provided researchers who are using the EBRAINS research infrastructure or who work within the Human Brain Project with the skills needed to identify and address ethical, legal, and societal issues that arise from brain research. With the purpose of enabling a responsible research and innovation culture within the Human Brain Project, EBRAINS, and the neuroscience community and raise awareness of the need to anticipate and deliberate on issues regarding responsibility through engaging with the public. This included providing tools and methods for foresight, as well as critical and philosophical reflection. We conducted training and compiled training resources that cover a wide range of issues in data governance, responsible research and innovation, and neuroethics.
Ethics & Society Training Resources
Anyone can request to address ethical, regulatory and social issues raised by HBP research.
Register an Ethical ConcernEthics & Society Training Resources
We have developed training resources that cover a wide range of issues in data governance, responsible research and innovation, and neuroethics.
Our training modules provide tools and methods for foresight, as well as critical and philosophical reflection.
Introduction to Responsible Research & Innovation in HBP Human & Animal Data in EBRAINS Gender, Diversity & Inclusion Researcher Awareness & Integrity Dual Use of Concern & Misuse Knowledge Transfer & Commercialization Neuroethics, Consciousness & AI Ethics Foresight & Public Engagement Science CommunicationMore Ethics & RRI
The Human Brain Project will have an impact on both science and society.
We promote RRI practices within the HBP, and help to shape the direction of its research in ethically sound ways that serve the public interest.
