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?
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
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.
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
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).
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