The Human Brain Project’s Ethics Advisory Board: Q&A with Shamim Patel

Shamim Patel (in the middle) with Kerstin
Håkansson and Simon Whitby at the HBP Education workshop in Stockholm, November 2018. Photo credits: HBP Education

How and why the highly regarded
HBP’s Ethics Advisory Board (EAB) was established? What its main achievement
are? And what the future holds for the EAB? Our
Question and Answer series with Ethics
Support
 task leaders continues with Shamim Patel,
task leader for the Ethics Advisory Board and Other Ethics Services.

What is the Ethics Advisory Board and what does it do?

The Ethics
Advisory Board
(EAB) is an independent management level body that provides expert
advice to the HBP on ethical, regulatory, social and philosophical issues. It is important to highlight that the advisory status of the EAB means
that individual researchers, laboratories and institutions retain their legal
responsibilities as well as professional obligations.

There are currently eight members. Each
has been chosen for their expert knowledge in a specific area relevant to the
HBP. Membership is determined by competence, geographical and gender balance.

What is the story so far, and what has the EAB
achieved?

At the time the HBP proposal was
being submitted in 2011 the number of ethical issues identified were abundant
and complex. These ranged from traditional animal and human research issues to the
more obscure topics at that time of data, third countries, dual and misuse. It
was therefore decided to establish two ethics committees. ELSA was to
concentrate on long term, Ethical Legal and Social Aspects, and REC (the
Research Ethics Committee) was to advise and help partners with short-term issues.

The first meeting of the two Committees
occurred in Paris in March 2014- six months into the project. Despite the
evening being damp, drizzly and frankly uninviting, a special effort had been
made by all to turn up for this inauguration event.  Everyone arrived full of curiosity, and keen
to play their part in helping the project succeed. At the same time very little
was known of what was expected of them. Information on HBP was presented in a classroom
at Institut Pasteur. Members munched on crisps and drank orange juice or fizzy
water out of paper cups (in accordance with IP policy). A well organised
working dinner followed in a small unpretentious restaurant nearby which helped
break the ice. However, the question on everyone’s lips, during the
presentations, throughout dinner and walking back through the streets of Paris
remained: what are we expected to do?

Six months later, in the summit at Heidelberg,
ELSA came up with what was to be the origins of the Point of Registration of
Ethical concerns PORE. The REC simultaneously presented the
Ethics
Rapporteurs
and Ombudsperson concepts. A further six months on REC
and ELSA had amalgamated into the current EAB. Soon afterwards their advice was
sought on a serious issue within the HBP submitted through the PORE process.
The EAB provided recommendations which were followed through and helped the
project wade through some muddy waters…

The EAB have since continued to demonstrate
their value to the HBP. They have for example contributed to the Data
Protection and Privacy Opinion
as well as provided recommendations for the latest Responsible
Dual Use Opinion
. They have
contributed to most of the HBP standard operating procedures (SOPs) too. These
have ranged from the Animal
Data from Third countries
SOP to the Conflict
of Interest
SOP). These
SOPs form the cornerstone of Ethics Support for the HBP.

Finally worth mentioning is that the
EAB have been very generous in welcoming ethics advisors from the other global
brain projects into their meetings. This has led to reciprocal invitations and
resulted in discussions and the sharing of best ethical practices, especially those
in practice within the HBP! 

What challenges remain for the EAB … and where to
next?

The EAB have so far provided their
time to the HBP on a voluntary basis. In the last six months 5 of the 13
members have stepped down due to time constraints. The EAB with five years’
experience of the project, have discussed the situation and how to move
forward.

They would like to see their role narrowed
and mandate more clearly defined. They have been actively involved in developing
tools to help establish good ethical practices. They would now like to take on a
more reflective role. For example, identifying and addressing high value topics
relative to the HBP such as Trust in Science, Privacy and Artificial
Intelligence. Some compensation for time has also been discussed as has the
introduction of a mentoring system to help encourage new members to join and
stay.  

The EAB have presented their
expectations to the HBP. These have in principle been approved by the
Directorate. It will be interesting to see how things develop and what the next
six months bring for the EAB and HBP.

Shamim Patel is task
leader for the EAB and Other Ethics Services. She provides support to the EAB
and helps organise and follow through on their meetings.

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