A sound data governance program ensures that data are consistent and trustworthy by efficiently managing the availability, usability, integrity, and security of data used in an organisation.
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 are 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 maximise 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 is developing responsible data governance & data sharing practices.
The Human Brain Project generates and processes big multifunctional data with different levels of sensitivity, in different formats and from different jurisdictions. The usability, quality, integrity, availability and security of these data are critical to excellent neuroscience research and innovation. To ensure these, EBRAINS has developed a responsible data governance framework/structure anchored on people, processes and technology. And important aspect of this framework is the Data Governance Working Group.
The Human Brain Project's Data Governance Working Group was created by decision of the Science and Infrastructure Board on 20 May 2016. Its purpose is to identify cross-cutting data governance issues that affect different parts of the Human Brain Project, clarify them and find possible solutions. The aim is to ensure that all data governance-related issues and questions can be discussed and, where required, decisions can be prepared. The Data Governance Working Group adopts the following principles:
- All parts of the Human Brain Project and EBRAINS that work with data are represented in the Data Governance Working Group (including representatives from all service categories).
- The Data Governance Working Group is a review and approval body
- Specific issues, questions and discussions take place in bespoke task forces
- Task forces are created for specific purposes. They produce proposals for the Data Governance Working Group and, once approved, task forces are disbanded. At present the data governance working group (DGWG) exists as a Project-wide body, approved by the DIR and reporting to the DIR.
The Data Governance Working Group is led by a Data Governance Executive Committee comprising of the Infrastructure Operations Director, Ethics Director, Innovation Director, Data Protection Officer, a representative from Technical coordination and a secretary. The goal of the Data Governance Executive Committee includes setting the direction and defining goals and priorities of the Data Governance Working Group, taking responsibility for progress and overseeing ad-hoc task forces. The Data Governance Working Group is critical to the development of Responsible data processing for the Human Brain Project and EBRAINS e-infrastructure.
Value & benefit
- The Data Governance Working Group ensures a responsible data ecosystem for researchers in the Human Brain Project and outside of the Project to be legally compliant and ethically responsible in processing data, particularly on EBRAINS
- The Data Governance Working Group develops critical policies and procedures that operationalises neuroethical and data ethics theories relevant for neuroscience research.
- The Data Governance Working Group is relevant to many of the core elements of EBRAINS as a data-centric e-infrastructure such as interoperability, data quality, usability, security, provision of access and sustainability.
- The risk of data breach will be high without a coordinating data governance body for a large-scale research and a distributed infrastructure like the Human Brain Project and EBRAINS.
- The Data Governance Working Group addresses not only legal concerns associated with data but also the ethical and social issues related to data collection, processing and use.
Key achievements & outputs so far
During the first two funding cycles of the Human Brain Project (SGA1 and SGA2), the Data Governance Working Group supported data governance and management infrastructure development across the Human Brain Project and led the production, revision and maintenance of the Human Brain Project's Data Policy Manual and Data Policy Quick Guide.
During the third Project cycle (SGA3) the Data Governance Working Group has developed a robust access control model of authorisation, authentication and agreement and developed policies and processes such as:
- EBRAINS Access Policy
- EBRAINS Data Provision protocol
- EBRAINS Data use Agreement
- Contributions to the development of EBRAINS curation pathway
- Developing procedures for responsible handling of animal data and ensuring appropriate origin of data
The Data Governance Working Group also participates in the International Brain Initiative Data Sharing and Standards Working Group and highlights the Human Brain Project/EBRAINS responsible data governance model in international workshops and conferences.
For the remainder of the Human Brain Project, the Data Governance Working Group will look to develop an adequate responsible data governance model specific to the diverse needs of the data processing activities for different EBRAINS services and platforms (including policies to address data misuse, bias and IP). Beyond 2023, the DGWG can be integrated into EBRAINS AISBL to focus on future infrastructure needs.
Damian O. Eke, Amy Bernard, Jan G. Bjaalie, Ricardo Chavarriaga, Takashi Hanakawa, Anthony J. Hannan, Sean L. Hill, Maryann E. Martone, Agnes McMahon, Oliver Ruebel, Sharon Crook, Edda Thiels, Franco PestilliNeuron 2021-12-15
Damian Eke, Ida E.J. Aasebø, Simisola Akintoye, William Knight, Alexandros Karakasidis, Ezequiel Mikulan, Paschal Ochang, George Ogoh, Robert Oostenveld, Andrea Pigorini, Bernd Carsten Stahl, Tonya White, Lyuba ZehlNeuroimage: Reports, Vol. 1, No. 4 2021-09-15
Members of the Data Governance Working Group
Developing an adequate responsible data governance model for data processing in EBRAINS.
If you have any questions about data governance in the Human Brain Project, please contact Damian Eke, Secretary for the Data Governance Working Group. Or submit your questions via the HBP Point of Registration of Ethical Concerns.
Human Brain Project Data Protection Officer
Data Governance Working Group Secretary
Work Package 1 representative
Service Category 1 (WP4) FAIR data
Service Category 2 (WP4) Brain atlases
Service Category 3 (WP5) Modelling / simulation
Dual Use Working Group Chair
Ethics Rapporteur Programme Lead
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.