Ethics Dialogues is a new blog of the Ethics Support work package of the Ethics and Society Subproject in the Human Brain Project (HBP). Our blog aims to facilitate sharing and exchange of good practices, research results and reflections on ethics support issues within and beyond the HBP. Our first post is Q&A with the HBP Ethics Director and Ethics Support work package leader Bernd Stahl.
Q1: What are the aims of Ethics Support in the Human Brain Project?
Ethics Support is one of the five work packages of the Ethics and Society Subproject. It aims to provide support to researchers and other colleagues within the HBP to understand the ethical issues that they may face, to comply with ethical requirements and to communicate with relevant stakeholders to continue to improve ethics-related processes. To achieve these aims, it works closely with the other work packages of the Ethics and Society Subproject, for example on exploring future challenges (Aicardi et al., 2018), or looking at ways of involving civil society in neuro-ICT research (Stahl et al., 2017), and interacts frequently with all aspects of the entire project. Ethics Support constitutes an important component of the programme of responsible research and innovation in the HBP.
Q2: What are the main activities of Ethics Support?
The term Ethics Support refers to the work package alluded to previously as well as a task within this work package. The task is a coordination task that brings together the other activities in the work package. In order to answer the question, it is therefore useful to look at all the activities in the work package. The individual task leaders will describe their tasks in more detail in subsequent blog posts. However, here is a brief overview. We provide specific tools to help HBP researchers deal with ethical issues (Stahl et al., 2016). This includes a range of standard operating procedures that cover specific questions, such as the use of animal data, principles of informed consent or research integrity. Where people are concerned about ethical issues, they can raise these through our online point of registration (PORE). We run the compliance management process, provide support to the Ethics Advisory Board, organise the Ethics Rapporteur programme, disseminate and reach out across and beyond the HBP, contribute to the ethics-related aspects of data governance, and host the Data Protection Officer. Finally, we contribute to the overall governance of the project by nominating the Ethics Director who represents ethical expertise on the HBP directorate. This is a position that I currently hold.
Q3: Who are the main collaborators of Ethics Support within and beyond the HBP?
We work with all partners of the HBP. For example, as part of the compliance management process we reach out to every single task leader to understand the ethical issues in their tasks. Our focus of attention depends on the current state of work of the overall project. We have worked very closely with the Medical Informatics Platform in looking at data protection issues with regards to patient data. In our collaboration with the Neuroinformatics platform we have looked very carefully at the question of how ethics can be integrated into data governance and we continue to chair the Data Governance Working Group. At the moment we are working with the Neurorobotics platform to explore specific challenges that arise from their work.
Q4: What are the main achievements of Ethics Support so far?
We have developed an established are number of processes that underpin the work listed above. This has led to a consolidation and clarification of the way in which ethics is dealt with across the HBP. Of particular importance with regards to European requirements was the development of a sound and rigorous compliance management approach that fulfils the needs of the European Commission and its ethics reviewers. By supporting the Ethics Advisory Board and establishing the Ethics Rapporteur Programme, we have created sustainable structures for ethics-related conversations within and beyond the HBP. The establishment of the Data Governance Working Group is to a significant degree due to the work undertaken in Ethics Support (Stahl et al., 2018). We are interested in exploring further areas of mutual interest with all other parts of the HBP.
Q5: What are the main challenges of Ethics Support for the next years?
At the moment a hot topic in the public discourse is that of artificial intelligence (AI). The HBP is trying to position itself in this broader discourse and Ethics Support will have an important role to play in clarifying how ethical concerns around AI will be interpreted and addressed within the HBP (Stahl and Wright, 2018). We will continue to play a role in finding suitable ways of addressing other ethical issues that the HBP faces, such as the very complex question of responsible to use. While we are moving towards the development of the infrastructure, the Ethics Support team will need to work with other partners in the HBP to find ways to integrate effectively and efficiently ethical questions and concerns into the developing infrastructure. This is partly a question of organisation, for example concerning the organisational location of compliance management or data governance including data protection. To a large part, this will also require ongoing research into the fast moving field of ethical issues, for example, to determine the criteria of equivalence of ethics approvals beyond the EU or required standards for data exchange with international partners.
Ethics Support is looking forward to a very busy SGA 2 (2nd Specific Grant Agreement: April 2018 to March 2020) period, which will set the tone for completion of the HBP infrastructure in SGA 3 (3rd Specific Grant Agreement: 2020 to 2023). It is important that the do this work well to ensure that the infrastructure will not only be scientifically valuable but also sensitive to societal concerns and will have ethics designed into its very principles, structures and technologies.
Bernd Carsten Stahl is Professor of Critical Research in Technology and Director the Centre for Computing and Social Responsibility at De Montfort University, Leicester, UK. His interests cover philosophical issues arising from the intersections of business, technology, and information. This includes the ethics of ICT and critical approaches to information systems.
Aicardi, C., Fothergill, B.T., Rainey, S., Stahl, B.C., Harris, E., 2018. Accompanying technology development in the Human Brain Project: From foresight to ethics management. Futures. https://doi.org/10.1016/j.futures.2018.01.005
Stahl, B.C., Rainey, S., Harris, E., Fothergill, B.T., 2018. The role of ethics in data governance of large neuro-ICT projects. J Am Med Inform Assoc. https://doi.org/10.1093/jamia/ocy040
Stahl, B.C., Timmermans, J., Mittelstadt, B.D., 2016. The Ethics of Computing: A Survey of the Computing-Oriented Literature. ACM Comput. Surv. 48, 55:1–55:38. https://doi.org/10.1145/2871196
Stahl, B.C., Wakunuma, K., Rainey, S., Hansen, C., 2017. Improving brain computer interface research through user involvement – The transformative potential of integrating civil society organisations in research projects. PLOS ONE 12, e0171818. https://doi.org/10.1371/journal.pone.0171818
Stahl, B.C., Wright, D., 2018. Ethics and Privacy in AI and Big Data: Implementing Responsible Research and Innovation. IEEE Security Privacy 16, 26–33. https://doi.org/10.1109/MSP.2018.2701164