Last month, STREAM Community Advisory Boards (CABs) from seven countries joined the eighth STREAM All-CAB webinar to learn more about ethical principles related to research, and their impact on the roles and responsibilities of key stakeholders. The webinar focused on how communities can ensure their views about clinical trials and other research are taken into account by researchers, ethics committees and regulators.

Professor Ponsiano Ocama, a Professor of Medicine at Makerere University College of Health Sciences and the Chairman of the School of Medicine Research Ethics committee (SOMREC) of Makerere University College of Health Sciences, began the webinar with a brief overview of the history and importance of ethical principles in research. He also discussed the role ethics committees play in ensuring the rights and welfare of research participants are adequately protected and that research adheres to sound ethical and scientific principles. His presentation underscored the significant benefits of community participation in research – which include enhancing protection of participants, improving investigators’ understanding of research objectives, and optimizing research design. And the group also discussed possible methods for facilitating community involvement, including through community member representation on institutional ethics committees and establishing community groups like CABs to advise ethics committees and researchers on the acceptability of research.

Dr. Ocama’s presentation was followed by Q&A from webinar participants. Davit Jikia began by asking whether ethics committees always have a community member and (if not) whether they should. The Professor confirmed his strong view that – either through community membership on the ethics committee or through ad hoc “accompaniment” of the ethics committee during their review of a trial – communities should always participate in the oversight of research. Yemisrach Zewdie, the Community Liaison Officer at the AHRI site in Addis Abba, Ethiopia, asked about community participation in study protocol preparation. The Professor explained that researchers should consult with CABs even at the protocol development stage to improve trial acceptability and implementation, and (ultimately) TB policies and programs.

Mduduzi Abednigo Shangase, CAB Member from Durban, South Africa, asked who is responsible for holding researchers accountable and ensuring they comply with accepted ethical principles. The Professor highlighted the importance of ethics committees in this regard, explaining the accreditation and regulatory oversight applicable to ethics committees helps ensure they apply appropriate ethical standards to the research they review. He emphasized that communities should always have input into whether research and research recommendations are acceptable to the local community.

Community members have a unique role to play in assessing the acceptability of proposed studies in their community, based on the benefits and risks of the study. This webinar equipped participants with the knowledge and tools they need to actively participate in holding researchers accountable. We are grateful to our partners Societatea Moldovei Impotriva Tuberculozei (SMIT) and REDE-TB for coordinating this series of webinars.

To read more about community engagement and the STREAM CABs, please click here.