What is the role of ethics in data governance in the Human Brain Project (HBP)? And how can awareness of data governance be raised within and outside the HBP? Our Question & Answer series with Ethics Support task leaders continues with Dr Tyr Fothergill, task leader for Ethics-Related Data Governance.
Q1: What are the aims of Ethics-Related Data Governance?
The Ethics-Related Data Governance task aims to support other data management and infrastructure endeavours within the HBP through the incorporation of ethical perspectives on data and data-related issues. These efforts take the form of primary research, writing academic papers, organising conferences on data governance, creating and delivering workshops and lectures in order to raise awareness of data-related ethical issues and data governance within the HBP, developing international connections with other research projects and consortia in light of the increasingly global nature of neuroscience and technology development, and chairing the Data Governance Working Group (DGWG).
Q2: What are the main activities of Ethics-Related Data Governance?
Chairing the DGWG and preparing and contributing to data policy, conducting research related to data ethics and governance, organising conferences and meetings, developing networks for future data governance initiatives and collaborations, and delivering internal and external talks and workshops to raise awareness are the main activities of the task.
The DGWG has members from all Subprojects in the HBP, and works collaboratively to identify cross-cutting data governance issues that affect different parts of the HBP, clarify them and find possible solutions. The DGWG is strategically oriented rather than technically oriented, generating policies which are subject to the approval processes of HBP governance structures. These are intended for local implementation by the institutions affected or other bodies as is appropriate to the issue, thus communication and discussion are also central to this work.
Q3: Who are the main collaborators with regard to Ethics-Related Data Governance within and beyond the HBP?
The DGWG is comprised of members from across the Human Brain Project and is innately collaborative in nature. As a task leader, I collaborate with Jan Bjaalie, the leader of Subproject 5 since the Neuroinformatics Platform is central to data-related work in the HBP, and Florent Gaillard in Subproject 8 but with respect to the Medical Informatics Platform. In related aspects such as reporting and pursuing research on ethics and data governance, I work closely with the Data Protection Officer (DPO), Kevin McGillivray, and the Compliance Manager, Will Knight.
More broadly, since the DGWG focuses specifically on data governance issues, it is important to coordinate and collaborate with other groups and roles within the HBP to address these, including the Science and Infrastructure Board, Directorate, the scientific and technical coordinators, the Joint Infrastructure Coordination Meeting, the Medical Informatics Data Governance Steering Committee, and other relevant bodies such as the Ethics Support team and the independent Ethics Advisory Board.
Q4: What are the main achievements of Ethics-Related Data Governance so far?
The highlights are continuing to work with the Data Governance Working Group and collaborating on the development of data policy, organising the Data Governance in International Neuro-ICT Collaborations conference in Oxford, discussing aspects of our strategy at the Global Neuroethics Summit in Seoul, and delivering internal talks and workshops to raise awareness at the Young Researcher’s event in Sofia and the HBP Summit in Maastricht.
Building on our data policy work in the previous funding period (SGA1, First Specific Grant Agreement: April 2016-March 2018), including the creation of the Data Policy Quick Guide and initial development of the Data Policy Manual (which is nearing submission), the DGWG will continue to develop data governance frameworks for the HBP in current funding period (SGA2, Second Specific Grant Agreement: April 2018-March 2020). We will also be looking more specifically at the way in which medical data is managed and processed in the HBP, creating Data Governance Audit Committee processes and associated terms of reference, and supporting the Data Protection Officer in the development of protocols and frameworks for HBP Data Protection Impact Assessments.
Part of Ethics-Related Data Governance coincides with Data Protection activities in the project, including ongoing work by the Data Protection Officer, Kevin McGillivray, on Data Protection Impact Assessments and related issues. These efforts are critical to HBP compliance with the Regulation (EU) 2016/679 (EU General Data Protection Regulation GDPR), which came into force as of 25 May, 2018.
Q5: What are the main challenges of Ethics-Related Data Governance for the next years?
The main challenges facing the task include a lack of awareness of data governance within and outside of the project, and the inherent ethical issues affecting data use, data-sharing, etc.; the changing legal landscape (interpretations of the GDPR across multiple Member States); a potential lack of resources to invest in determining adequacy or developing guidelines or standards for approvals or certification adequacy, especially in terms of international collaboration; changes in the HBP itself as the project shifts through different funding periods; and the general challenges of working across multiple regulatory, cultural, and institutional frameworks.
In next funding period (SGA3, Third Specific Grant Agreement: April 2020-March 2023), it is likely that fundamental structural changes within the HBP will mean that although issues such as data protection, privacy, security, and related ethical aspects will remain important, the ways in which data governance policy is developed and implemented will also change. In the future, we hope to work toward explicit use of the FAIR (Findable, Accessible, Interoperable, Re-useable) data guidelines in all aspects of data governance, and reflect on the feasibility and possible methodologies for a system for tracking non-EU data and evaluating it for potential adequacy with EU ethical standards so that it can be processed and shared.
Q6: Anything else?
Useful resources on Data Governance in HBP:
- Data Governance Working Group Webpage: https://www.humanbrainproject.eu/en/social-ethical-reflective/dgwg/
- The Data Policy Quick Guide: https://sos-ch-dk-2.exo.io/public-website-production/filer_public/25/2a/252ac9d0-d408-41fc-8fae-bab89dae5ee6/hbp_data_policy_quick_guide.pdf
- Data Protection Officers and Resources: https://www.humanbrainproject.eu/en/social-ethical-reflective/ethics-support/data-protection/
- General Data Protection Regulation (GDPR) Factsheet: https://sos-ch-dk-2.exo.io/public-website-production/filer_public/6f/93/6f93ec8a-a529-433d-b87e-c977a3f6ebe1/gdpr__factsheet_-_sharing.pdf
- Contact the Data Protection Officer: https://skjema.uio.no/94779
Dr Tyr Fothergill is a Research Fellow in Ethics Support and Researcher Awareness on the Human Brain Project at De Montfort University in the Centre for Computing and Social Responsibility. She is Chair of the Data Governance Working Group for the Human Brain Project, and sits on the Medical Informatics Platform Data Governance Steering Committee.
Tyr originally trained as a palaeopathologist studying signs of disease and injury in skeletal remains from archaeological sites, but her interest in the processes and nature of research, led to a shift in personal research focus. Tyr is interested in technology ethics and neuroethics; ethics communication and outreach; responsible data governance; archaeological insights into human relationships with nonhumans in digital environments; neuroscience history; and developing a temporally-contingent framework for researcher reflection within Responsible Research and Innovation. Tyr is also an Auroran (Women in Leadership in HE) with interests in intersectionality, representation, and equality issues.
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