By Morenike Oluwatoyin Folayan and Elhadji Mbaye

The Network for Ethics Committees operating in West Africa, at the conclusion of its meeting held last September 25th to 27th,  reached a consensus that civil society organizations need to be more involved in the activity of the Institutional Review Board.

This recommendation followed extensive discussions and deliberations on the important role the layperson on ethics committee plays.

They identified that Institutional Review Boards are in themselves, research gatekeepers for the community they serve. They are therefore critical in ensuring research they approve have social values.

They also need to conduct risk-benefit analysis prior to making the decision about protocol approval and compensation for research related injuries.

The component risk-benefit analysis should consider the impact on third parties which may not just be individuals at close proxy to the research participants, but may have impact for the community.

Lay persons on ethics committees are best positioned to provide insights into the socio-cultural, political, economic and health contexts of the community that can inform decision making about the social value of the research, and the component risk-benefit analysis.

Participants and facilitators at the training felt that having a layperson on the ethics board identified from a civil society organization has a number of merits.

The individual has a constituency through which (s)he can engage and ask relevant questions that are important for making critical inputs and decisions during research protocol review.

The need for such extensive consultation was highlighted by Prof Borodo at the just concluded 2017 Annual Bioethics Forum that held between December 13th and 14th.

He presented a case study where the ethics committee had to extensively consult on practices to determine the deferred standard of care for clients to be able to determine the social value of a specific research protocol they reviewed, and was thereafter able to make appropriate suggestions for protocol review.

One or two laypersons on the ethics committee do not have all the knowledge to enable them make critical decisions about norms and cultures moreso culture evolves. Additionally, community members are also rarely sent research protocols for external reviews.

 

Laypersons may therefore have to consult with the constituency they represent to elicit those critical information that may be required for protocol review purposes. Belonging to a civil society makes this feasible.

Institutional review boards are therefore encouraged to ask for representation on their board from credible civil society working in the communities they serve. Asking civil society organizations to send their representative to the ethics committee increases the sense of allegiance and accountability of the laypersons to the community. It also increases the prospect for taking the role serious.

A challenge with this, however, is first, the need to ensure confidentiality is maintained. The sense of allegiance and accountability to the community shouldn’t be a reason for public discussions of research protocol content.

This challenge can be addressed through in-house training of all members on the importance of confidentiality and the practice of confidentiality by the board.  Laypersons also need to be trained on how to review research protocols and provide constructive feedback. This is feasible as the New HIV Vaccine and Microbicide Advocacy Society has done this successfully for many years in Nigeria with excellent results.

In an evolving world with evolving practices, the way communities are engaged with research also seems to be evolving. It will be great to watch how this consensus decision by the Network of ethics committee members in West Africa is implemented.

Morenike Oluwatoyin Folayan is of New HIV Vaccine and Microbicide Advocacy Society (NHVMAS), Nigeria.

Elhadji Mbaye is of IRESSEF, Senegal.