We coordinate 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 includes 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 are building capacities to enable a responsible research and innovation culture within the Human Brain Project, EBRAINS, and the neuroscience community.
Compliance Management is 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 overlap 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 works 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.
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 has 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 assists in carrying out data protection impact assessments (DPIA), among other compliance tasks.
In addition to data protection compliance, the DPO has a communication function and consults with data subjects, HBP Partners and leadership, and supervisory authorities. The DPO is also a part of the Data Governance Working Group.
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 includes 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.
Ethics Rapporteurs Programme
Deepening 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 is your contact!
Ethics Rapporteur Programme
The Human Brain Project’s Capacity Development Committee works to provide 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. Enabling a responsible research and innovation culture within the Human Brain Project, EBRAINS, and the neuroscience community. And raising awareness of the need to anticipate and deliberate on issues regarding responsibility through engaging with the public. This includes providing tools and methods for foresight as well as critical and philosophical reflection.
Ethics & Society Training Resources
Anyone can request to address ethical, regulatory and social issues raised by HBP research.Register an Ethical Concern
More 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.