Dilemmas of Ethics in Practice in Longitudinal Health Research: Identifying Opportunities for Widening Participation...

Background: Mechanisms for widening participation of local participants in research studies can improve governance of public health research. Research conducted in longitudinal health study areas depends on there being mutual trust and respect over time between the local residents and researchers. Ethics in practice needs consideration alongside procedural ethics. By widening participation of the experimental public-local residents and resident service providers-ethics in practice and accountability are strengthened. Methods: The study was undertaken in a longitudinal health study area in rural South Africa using multiple qualitative methods. The sample included 35 individual and five group interviews with resident local leaders and service providers, 24 individual and eight group interviews with residents of the study area, and ten researchers' reflections on two critical incidents from ethnographic field notes on dilemmas of ethics in practice. The interviews were all audio-recorded (besides one where consent to record was not given) and then transcribed verbatim and translated from Shangaan into English. Thematic analysis was conducted. Results: Residents requested the reporting back of personal screening test results from research studies, and raised informed consent issues. Researchers recognized the importance of mechanisms to increase their accountability to residents throughout the research process, and the complexity of informed consent and fieldwork procedures within research studies. Conclusion: This study elicited the views of residents and researchers in a longitudinal health study area to seek guidance on how to strengthen participation in research governance. Three strategies were identified by participants to widen participation of the experimental public. Firstly, increasing study budgets so that individual screening test results could be personally delivered back to participants. Secondly, more rigorous field staff training in informed consent and study procedures with ongoing monitoring and supervision from researchers. Thirdly, increased earlier involvement of residents in research protocol development through study advisory groups. Additional strategies include deeper involvement of Community Advisory Groups and more focused dissemination of research results to specific audiences. In general, there is a need to identify strategies for increased accountability of researchers and participatory governance through involvement of the experimental public in all aspects of longitudinal public health research as part of the ethics in practice and democratization of science.