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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