The HBP Data Governance Working Group

(DGWG)

What is Data Governance?

Data Governance (DG) 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, DG 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.

“Developing responsible data governance and data sharing practices”: the HBP Data Governance Working Group (DGWG)

The Human Brain Project deals with different types of data from different provenances, for different uses, by different people, in different contexts and countries, with different objectives and different means.

In a single sentence, one can understand how crucial Data Governance is within the HBP. The DGWG includes an assembly of DG representatives from each Subproject, representing all facets of the 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 the decision-making bodies in the project.

The DGWG works closely with other bodies in the HBP, notably the Science and Infrastructure Board, the Directorate, the Data Protection Officer, the Scientific and Technical coordinators, the Medical Informatics Data Governance Steering Committee, and other relevant bodies such as the Ethics Support team, and the independent Ethics Advisory Board. Our Terms of Reference can be found here .

Under the first phase of the project (SGA1), the DGWG produced, amongst other documents,

For SGA2, our current activities include:

  • Continuing revision of the Data Policy Manual
  • Drafting the Charter on Governance of Data Sharing and Analysis
  • Developing processes for Data Governance Audit Committees
  • Supporting the development of the Data Curation Plan, KnowledgeGraph, and Data Management in the HBP

Members and Roles

 

HBP Ethics Director   

SP12     

Bernd C. Stahl

 

          

DGWG Chair   

Ethics-Related Data Governance    

SP12    

Tyr Fothergill

 

 

DGWG Co-Chair   

Ethics, Data Governance    

and Outreach Officer    

SP8    

Florent Gaillard

 

 

DGWG Co-Chair   

SP5 Leader    

Jan Bjaalie

 

 

Scientific Coordinator   

 

 

 

Martin Telefont

 

 

Data Protection Officer   

SP12    

Kevin McGillivray

 

 

DGWG Secretary   

Ethics Compliance Officer    

SP12    

Will Knight

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

This page was last updated on 06/12/2018.

 

             

Representative   

J. Douglas Armstrong

 

 

Representative   

 

 

 

Bertrand Thirion

 

 

Representative   

Mavi Sánchez-Vives

 

 

Representative   

 

 

 

Sonja Grün

 

 

Representative   

Roman Volchenkov

 

 

Representative   

Felix Hoffstaedter

 

 

Representative   

Shailesh Appukuttan

 

 

Representative   

Andrew Davison

 

       

 

 

 

Representative   

Colin McMurtrie

 

 

Representative   

 

 

 

Vasilis Vassalos

 

 

Representative   

 

 

 

David Lester

 

 

Representative   

Björn Kindler

 

 

Representative   

Fabrice Morin

 

 

Representative   

 

 

 

Annapoorni Sitaraman

 

 

Representative   

 

 

 

Martina Schmalholz

 

 

Representative   

Manuel Guerrero

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

This page was last updated on 11/12/2018.