As part of my work on the Human Brain Project (HBP) in the Ethics and Society Subproject (SP12), I take part in external and internal outreach events for the HBP Data Governance Working Group (DGWG), a collaborative cross-SP group dedicated to supporting innovation and infrastructure development through data governance and management.
Several months ago, HBP Education representatives contacted me about providing a talk and facilitating discussion on the ethics side of Data Governance in the HBP for young researchers at the Bulgarian Academy of Sciences for their April 2018 Young Researchers Event in Sofia. I also attended the Shaping Europe’s Digital Future exhibition on High Performance Computing at the Bulgarian Palace of Culture on behalf of SP12.
The intention of this invitation was to give young researchers within and outside of the HBP an orientation to data governance and provide useful information on ethical issues, the compliance process, the General Data Protection Regulation (GDPR), best practice in data handling, and related matters. Additionally, these events influenced the way that the DGWG has approached engagement with the rest of the HBP.
The HBP Education Young Researchers Event: “Brain Models and Computation for Brain Medicine”
Approximately 70 people attended the YRE, which was opened with a plenary by Professor Dr. Katrin Amunts and an introduction by Dr. Thomas Skordas, Director “Digital Excellence and Science Infrastructure” Directorate General for Communications Networks, Content and Technology (DG CONNECT). The majority of talks described tools and platforms available for brain-related and brain-inspired research. My talk on Ethics and Data Governance in the HBP covered the data-related Ethics Support infrastructure and processes, the roles of the Ethics Director and Data Protection officers, and a brief walkthrough of Horizon 2020 Ethical Issues and the GDPR. Discussion afterward was driven by an online interactive question-led session which allowed participants to remain anonymous if they wished to do so. I explained each question with the intention of using the replies to more precisely target the issues which participants would find the most relevant.
The results from the question session are as follows:
- What types of data do you use in your research?
(14 respondents, multiple choices were permitted)
Non-patient human health/brain data 36%
Human patient data 43%
Non-human animal data (rodent) 7%
Animal data (non-human primates) 0%
Simulation data 57%
- Which Horizon 2020 issues does your research involve?
(10 respondents, multiple choices were permitted)
Model organism data 10%
Humans (human beings, cells, embryos, etc.) 40%
Research activities in non-EU countries 60%
The potential to impact the environment, health, and safety 10%
The potential for irresponsible dual use or misuse 20%
The potential for unexpected issues to arise 20%
- How do you see your research fitting into the general Data Governance infrastructure of the HBP?
“I never thought about it 🙁 I guess I have to have a deeper look to have a good idea”
“Not really. Not using person data, all simulation. Right?”
“As infrastructure providers or software developers, dealing with this topic is tricky. On the one hand you need to fill out surveys, in the other hand you can hardly control what happens with your stuff…”
“It fits in the infrastructure quiet well”
Open questions from participants in the online system:
“Do the MRI images are the part of the Clinics or the patients?”
“Did you face any criticism of any organizations which are against the research.”
“What happens if I miss use data? Will I be arrested/fined?”
“Do I get fined or my university?”
“What happens if, through analysis or machine learning, I manage to learn some information from anonymized data which is supposed to remain anonymous?”
The responses helped to guide the material that was discussed (e.g. ownership of patient data, data protection legislation) and the resources I offered, but other aspects are worth noting (though the sample size of respondents was small compared to the overall number of attendees).
The division of data types in question 1.) was likely the result of the YRE event being focused on Brain Models and Computation, with health/brain data and simulation data dominating. The results of the question about Horizon 2020 Ethical issues were very interesting, and in 2.), high proportions of non-EU country data and human data were expected given the topical material of the event, but only 20% of respondents believed that unexpected issues would arise with their research, and the same was true for irresponsible use or misuse of their research. From the discussion and in-person questions I received at the end of the day, few attendees had considered whether or not they had used personal data. The responses to 3.) on how their research fits into the Data Governance structure of the HBP demonstrate that awareness of these issues should be prioritised within the project, with researchers provided with more support on data ethics, governance, and management in the future.
Beyond these fairly shallow interpretations, these discussions and conversations with participants after the event have shaped the way that the DGWG has prioritised awareness of our work within the project. They also drove home the issue that despite the fact that all SPs in the HBP use personal data in some way (even if it is only staff or user data), a low proportion of young researchers are aware of this. Partly as a result of the discussions at this event, the DGWG now has a webpage and has made other efforts (posters, meetings with SP managers and project-wide bodies) to widen access to our outputs (e.g. the Data Policy Quick Guide) and enhance understanding of our work, our members, and the topics we address.
Shaping Europe’s Digital Future HPC Exhibition: Representing SP12
The following day, I had the privilege of representing SP12, Ethics and Society at the Shaping Europe’s Digital Future exhibition on High Performance Computing. I spoke to dozens of students, professionals, and civil servants about the role of Ethics and Society in the Human Brain Project and how Responsible Research and Innovation relates to computing research. I conversed with representatives from Jülich research centre about the potential ethical implications of High Performance Computing and concerns around responsible data governance in the HBP. I also had the great honour of meeting Mariya Gabriel, European Commissioner for Digital Economy and Society. She was extremely positive and enthusiastic about SP12, especially Ethics Support, and was very keen that we continue on our present course and also that we raise awareness of our work.
Both events have encouraged greater engagement with data governance in the HBP, and I would welcome the opportunity to take part in similar events in the future.
Dr. Tyr Fothergill is a Research Fellow in Ethics Support and Researcher Awareness on the Human Brain Project at De Montfort University (Leicester, UK) 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.