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.
Essentially, data governance is a strategy. It is a set of formal processes that ensures data is properly managed: how information is generated, stored, used, maintained, etc. In a legal context, data governance includes control and oversight over related policies, standards, and procedures, with effective oversight managed by a regulatory group.
In other words, it combines strategies and information, focusing on privacy, quality and integrity of the data and supporting the HBP in meeting regulatory requirements. Ultimately, it ensures that data serve the purposes of the Human Brain Project in an ethical and legal way so that it can maximize the potential of the data.
Data Governance Working Group
Data Governance is an integral part of the Human Brain Project. The Data Governance Working Group (DWGW) is an assembly of data governance representatives from across the HBP, representing all facets of activities across the project. This group supports the advancement of research in the Human Brain Project by developing responsible data governance and data sharing practices for approval, adoption, and implementation by decision-making bodies in the project.
Data Protection in the HBP
Find out who is the Human Brain Project's data protection officer, utilise our resources for data protection in the Human Brain Project, or delve into EU resources on the topic.
Compliance Management ensures that Human Brain Project activities comply with European ethical principles and corresponding regulatory standards. These efforts overlap with Data Governance and Data Protection.
Ethics Rapporteur 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!
Register an Ethical Concern
Anyone can requests to address ethical, regulatory and social issues in Human Brain Project research. The POint of REgistration (PORE) is HBP’s mechanism to register and identify these issues and keep track of how they are dealt with.