American, Australian, and United Kingdom partners teamed up with Nigerian scientists and advocates to examine community engagement in research and dialogue with researchers in an article titled “Debating Ethics in HIV Research: Gaps between Policy and Practice in Nigeria”. The article was recently published ahead of print in Developing World Bioethics (http://onlinelibrary.wiley.com/doi/10.1111/dewb.12064/abstract).
[Photo: Community dialogue meeting on research ethics in Nigeria]
Nigeria has one of the worst HIV epidemic profiles in the world, and as a result has a tremendous amount of internationally funded research. Ethical guidelines for the conduct of research are being modified, and community engagement is necessary to design and implement HIV related studies. Still, there is very little commensurate effort in building the capacity of local persons to engage actively with researchers, and there is no existing platform to facilitate dialogue between researchers and communities engaged in research in Nigeria.
To address this communication gap between researchers and participants, we undertook a series of community dialogues and community-researcher interface meetings in three major cities in Nigeria (Lagos, Osogbo, and Abuja). We aimed to highlight the main issues perceived by community groups in the areas of informed consent; community engagement; standard of care; and to describe the outcomes of discussions between community groups, researchers and other HIV/AIDS research stakeholders.
Perceived gaps between policy and practice in ensuring ethical conduct of research in Nigeria were due to poor adherence to the ethical conduct of research, and inadequate oversight of studies by national regulatory bodies. Participants emphasized that community engagement should support stakeholders in identifying unethical practices as well as adequately resolving them. One important form of community engagement mentioned was the effort to promote research literacy. Another was consultation with the community and identifying the ‘community’ itself. There was consensus that unethical practices have less to do with the multiplicity of ethical guidelines but rather, the ability of researchers to imbue the practice of ethics. Efforts therefore need to be invested in teaching and training researchers on ethical conduct of research.
Manuscript authors include Dr. Morenike Folayan from the Institute of Public Health at Obafemi Awolowo University, Dr. Kristin Peterson from the UC Irvine anthropology department, Dr. Bridget Haire from the Centre of Values, Ethics, and the Law in Medicine at the University of New South Wales, Dr. Brandon Brown from the UC Irvine Program in Public Health GHREAT Initiative, Mr. Olumide Makanjuola from the Initiative for Equal Rights, Mr. Babatunde Pelemo from the Christ Against Drug Ministry, Mr. Kadiri Audu from International Rectal Microbicides Advocates, and Dr. Vicki Marsh from KEMRI Wellcome Trust and Oxford University.