By Morenike Folayan
New HIV Vaccine and Microbicide Advocacy Society, Nigeria
Professor Morenike Folayan |
The communitarian nature of West Africa in particular and Africa in general is one of the reasons why community engagement in HIV prevention research has been rigorously pursued for the conduct of HIV prevention research. Most HIV prevention research are conducted in Africa. One of the strategies adopted to help promote community engagement in HIV prevention research was the development of the Good Participatory Guidance Document by UNAIDS and AVAC in 2007 (the document was revised in 2011). The document helps to streamline an ‘art’ of community engagement in a regulated ‘science’ of processes.
One of the potential areas where a community phenomenon may become regulated is the process of unwittily standardizing culture. Ethics committee members that attended the 2017 annual bioethics forum in Abuja, Nigeria on the 13th and 14th of December 2017 were constantly reminded about the need to review research protocols in ways that ensure respect for culture. However, there was a concern raised about the same ethics committee becoming caught in a quagmire of standardizing culture like they standardize clinical care or even standardize HIV prevention packages.
Culture is dynamic and ever evolving. Members of ethics committees reviewing research protocols may be at different ends of these evolving cultures spectrum. A very typical example shared at the meeting was the increasing recognition and adoption of the view that access of adolescents to contraception to prevent pregnancy needs to be enhanced to prevent the mirage of growing challenges associated with unwanted pregnancies. Sadly, custodians of local tradition on ethics committee may speak against research that facilitates adolescents’ access to contraception. This same cultural guidance may impact negatively on HIV prevention research that facilitates access of adolescents to pre-exposure prophylaxis.
This implies that for ethics committees to ensure research proposals are cultural sensitive and culturally appropriately designed, the ethics committee members need to keep abreast with evolving cultures, be less paternalistic in role as the custodians of culture, and their external engagement with stakeholders for the review of research protocols should also include learning about new cultural trends in the communities they serve. They consciously have to prevent the development of a standard of culture through which lens they review all their research protocols.
The meeting also discussed extensively the unethical exclusion of pregnant women from research resulting from an un-queried culture of research practice. This sadly has led to significant limited data on research outcomes for pregnant women. Researchers and ethics committee members were encouraged to also scrutinize the data analyses plan to ensure that the research analyze is gender and where possible, pregnant women sensitive so we can see more and more women and pregnant women related research data outcomes as we move into the future.
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