Q&A: Point of Registration of Ethical Concerns (PORE) in the Human Brain Project

Manuel Guerrero

 

Q1:
What are the aims of the Human Brain Project’s PORE (Point of Registration of
Ethical Concerns)?

The PORE utility provides a way to identify ethical,
regulatory and social issues in Human Brain Project (HBP) research and
innovation, which may be raised from any person from inside or outside the HBP
community in any time: during the initial planning of an experiment through
phases of implementation.

Having a PORE is a way for the HBP to keep
track of these issues. It enables anyone to follow registered matters from
start to finish. In other words, PORE is one of the HBP mechanism that is in
place to promote Responsible Research
and Innovation
 (RRI) goals,
specifically those related to ethics and research integrity for and with the
society. Indeed, from an RRI perspective, research and innovation, including
its outcomes and the way it is conducted, has to be morally grounded and
acceptable to society. PORE enables to open communications links between the
HBP research community and the society, to be accountable and ultimately to
improve the quality of research and innovation addressing and keeping track of
ethical issues.

Q2: How does PORE work?

There are two ways for submitting ethical
concerns via PORE:

  1. Open requests by completing a PORE online form any person may ask that the HBP ethics body advises on specific ethical, regulatory and social issues. Such submitted requests are registered in PORE. The PORE registrar performs triage to ensure that requests are appropriate. For example, the registrar redirects issues that have already been addressed or for which standard operating procedures (SOPs) exist. The PORE registrar then recommends a distribution to the attention of the Ethics Director and the Ethics Support team; and, typically, to the Ethics Advisory Board and the Ethics & Society Subproject (SP12) Steering Committee.
  2. Anonymous Requests, using the same PORE online form, any person may choose to remain anonymous while asking that a specific ethical, regulatory or social issue be brought to attention. Anonymous requests are reported in Simple PORE individual and Summary submission reports, but only anonymously. All names, institutional affiliation and other potentially personally-identifying information are removed.

Completing and submitting the PORE form
automatically initiates a simple report to be permanently stored in a Tresorit file. From these
simple initial reports, an executive report is prepared that summarises all
live PORE issues. The executive reports are distributed when appropriate to
specific bodies, such as the Ethics Director, the Ethics Advisory Board, the Ethics & Society Steering
Committee, HBP management bodies. Manuel Guerrero, task leader
of the Ethics Rapporteur
Programme
, regularly reports
the PORE registrations at the Ethics Support team meetings and helps to coordinate the whole PORE cycle.

Q3: Who are the main collaborators of the HBP’s Point
of Registration of Ethical Concerns?

PORE relates to all the HBP’s subprojects.
The registered concerns can cover research ethics issues that involve human
subjects or non-human animals; data governance issues (i.e. data breach questions), or dual use of concern matters, among many other topics. Consequently, PORE
interacts with all the HBP. But notably, it has formal communication links with
the Ethics Advisory Board, the Data Protection
Officer
, the Ethics Director and
the Ethics Support
 team,
the Data Governance
Working Group
, the Dual Use Working Group and the Neuroethics and
Philosophy team
.

Q4: What are the main achievements of the PORE so far?

The PORE platform has allowed the HBP to
have an open window to raise ethical concerns, which complements other ethical
structures and mechanisms that are in place in the HBP. Singularly, PORE is
open not only to the HBP community but to any person who wants to raise ethical
concerns that involve the HBP research and technology work. A significant
achievement for has been that it helps the HBP to promote researcher
awareness
, research integrity and responsible innovations, considering the
ethical concerns that the researchers, technicians or the general public raise.

Q5: What are the main challenges of the Point of
Registrations of Ethical Concerns for the next years?

A constant challenge is how to make PORE
more known outside the HBP community. The platform is very user-friendly, but
it has been not so easy that, for the high complexity of the HBP work, more
people use it raising more and more specific HBP-related questions. PORE
registers all the issues that are raised open or anonymously.

Some of the concerns have no direct
relationship with the HBP. Anyway, it is fascinating to know which are the
general ethical concerns that people have related to brain research, robotics or
neurotechnologies in general. In that sense, PORE is an excellent tool to map
general ethical issues associated with brain research and technology in
general. In the next years, I think PORE can improve its work by collaborating
with other similar initiatives, like the ELSI Helpdesk of Biobank Sweden, which gives support in ethical, legal and
social issues answering questions and providing advice on how to handle these
issues. There is room for mutual improvement and for sharing good
practices.  

Q6: Anything else?

To invite anyone to use this the PORE platform for registering and identifying ethical issues and keep track of how the
HBP deals with them. For a further and more in-depth understanding of the HBP’s
ethics governance structures, please read 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. Neuron, Vol 101, Issue 3, p380-384, and Beyond Research
Ethics: Dialogues in Neuro-ICT Research
 (2019) Stahl BC, Akintoye S, Fothergill BT, Guerrero M, Knight W
and Ulnicane I. Front. Hum. Neurosci. 13:105. DOI:
10.3389/fnhum.2019.00105 

Manuel Guerrero is a sociologist and bioethicist with
extensive experience in human rights. He holds a PhD in Sociology and
Postgraduate Diplomas in Medical Ethics and Research Ethics. He is part of the
Neuroethics
and Philosophy of the Brain
team at the Centre for Research Ethics
& Bioethics at Uppsala University and Assistant Professor of Bioethics at
the Department of Bioethics and Medical Humanities in the Faculty of Medicine
at University of Chile. In the Human Brain Project’s he is the
Ethics
Rapporteur programme
lead, part of the HBP’s Ethics &
Society
subproject. Contact: manuel.guerrero@crb.uu.se

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