Manuel Guerrero at the HBP Education workshop in Stockholm 2018. Photo credits: HBP Education

How does the Ethics Rapporteur Programme in the Human Brain Project (HBP) work? What are its main achievements and future challenges? Our Question and Answer series with Ethics Support task leaders continues with Dr. Manuel Guerrero, task leader for the Ethics Rapporteur Programme.

Q1: What are the aims of the Ethics Rapporteur Programme?

The Ethics Rapporteur Programme is a vital component of the ethics management and research awareness activities of the HBP, which aims to contribute to a broad uptake of principles and practices of responsible research and innovation (RRI) across the HBP. The primary purpose of the programme is to deepen understanding of potential ethical and social implications of research and other work by the academics, scientists and engineers in all the subprojects (SP) and partnering projects (PP), and to establish communication links that help HBP achieve and maintain RRI goals. Overall, the Ethics Rapporteur Programme aims to encourage and support ethical and social responsibility among the agents and activities of the HBP.

Q2: What are the main activities of the Ethics Rapporteur Programme?

The Ethics Rapporteur Programme´s strategy is to establish rapporteurs within each SP and PP in order to represent their work and to anticipate and address ethical and social issues. The Ethics Rapporteur is an academic, a scientist, a technologist or an administrator engaged in the work of the HBP who is designated with the responsibility to communicate with the Ethics Support team and the Ethics Advisory Board about the ethics, science and technology work of the SP or PP. The Ethics Rapporteurs have regular monthly teleconferences and annual physical meetings, in which they inform and discuss ethical and social questions and share good practices.

The rapporteur may also choose to register ethical, regulatory, or social issues in the POint of REgistration (PORE) platform, which ensures the issues can be followed through to a result or disposition, and that the HBP´s different ethics bodies handle such issues. The programme engages the rapporteurs to participate in workshops and online courses prepared by the HBP Education Programme in collaboration with the Ethics & Society subproject. Annually, the rapporteurs synthesise the ongoing ethical and social issues in the so-called “one-pagers”, a written tool that helps the HBP to gain an ethics overview of the whole project. Annually, as well, we have “trilateral ethics meetings”, in which subprojects representatives -SP leaders, managers and the dedicated ethics rapporteur-, meet the Ethics Support team and an Ethics Advisory Board representative in order to monitor the advances of the ethics component of their current work jointly.

Q3: Who are the main collaborators of the Ethics Rapporteur Programme within and beyond the HBP?

Inside the HBP the programme has formal communication links with the Ethics Advisory Board, the Data Protection Officer, the Ethics Manager and the Ethics Support team, the Data Governance Working Group, the HBP Education Programme, the Dual Use Working Group, the Neuroethics and Philosophy team, and each subproject and partnering project, as well as cross-cutting subprojects in the HBP. Outside the HBP, the programme has collaborated with the International Brain Initiative, and other RRI and neuroethics related forums and activities.

Q4: What are the main achievements of the Ethics Rapporteur Programme so far?

By the end of the previous funding period (SGA1, 1st Specific Grant Agreement: April 2016-March 2018), we managed already to have ethics representatives for all the subprojects, with an active contact with their Ethics Advisory Board “match-up”, running a regular ethics oversight and research awareness work-flow which helps the HBP identify emergent ethical and social issues on time. If we consider the different international brain research initiatives that are in course, the HBP´s Ethics Rapporteur Programme is unique. That is because it is an embedded ethics governance structure in which the researchers and technicians are the ones who identify and handle the ethical issues receiving methodological and theoretical support from a specific subproject (the Ethics & Society subproject).

To have this interdisciplinary ethics rapporteur community working regularly together is a great and original achievement. By the current funding period (SGA2, 2nd Specific Grant Agreement: April 2018-March 2020), HBP’s Science and Infrastructure Board (SIB), extended the programme to the partnering projects as well. Currently, we are working together, subprojects and partnering projects, in a joint ethics rapporteur network.

Q5: What are the main challenges of the Ethics Rapporteur Programme for the next years?

One of the challenges is to advance in having the CoDesign Projects on board, which are multi-disciplinary and cross subprojects led by senior scientists from the HBP and are designed around collaboration, data gathering and simulation between the HBP’s Platforms. The Ethics Rapporteur Programme, due to the HBP´s history as a project, has been more research than innovation oriented.  By now we have been successful in covering the “responsible research” part of the RRI framework. As the HBP is advancing towards the collaborative brain research infrastructure building, we have to face the “responsible innovation” part with more emphasis.

Q6: Anything else?

If there are queries regarding ethical, regulatory and social issues in HBP research, they can be raised via the PORE platform, an HBP mechanism to register and identify these issues and keep track of how they are dealt with. For a further and more in-depth understanding of the HBP´s ethics governance structures, please read Neuron´s special issue on neuroethics: The Human Brain Project: Responsible Brain Research for the Benefit of Society (2019). Salles A. Bjaalie J.G. Evers K. Farisco M. Fothergill T. Guerrero M. Maslen H. Muller J. Prescott T. Stahl B. Walter H. Zilles K. Amunts K. Article

Manuel Guerrero is a sociologist and bioethicist with extensive experience in human rights. He holds a Postgraduate Diploma in Medical Ethics and Research Ethics, and a PhD in Sociology. He is Assistant Professor in bioethics at the Department of Bioethics and Medical Humanities in the Faculty of Medicine at the University of Chile. He currently works as Research Coordinator at the Department of Neurobiology, Care Sciences and Society, in the Division of Neurogeriatrics at the Karolinska Institutet (Sweden), and is Visiting Researcher in Philosophy of the Brain and Neuroethics at the Centre for Research Ethics and Bioethics, at Uppsala University (Sweden).

Leave a Reply

Your email address will not be published. Required fields are marked *