Photovoice, a community-based participatory research method, employs images and words to convey participants' needs, concerns, and desires. It proves particularly valuable in researching marginalized communities who face elevated health risks, disease transmission, and social and health disparities. This paper seeks to investigate the ethical considerations inherent in photovoice research projects. We conducted an extensive literature review spanning four databases to identify pertinent photovoice studies. Ethical issues from the selected articles were identified, categorized, and summarized. Our analysis of twenty-five photovoice studies (...) uncovered various ethical concerns, which had been grouped into informed consent, participant safety and disclosure, privacy and confidentiality, misrepresentation, power dynamics, and compensation. In essence, our findings underscore the importance of addressing these ethical concerns to uphold the rights and autonomy of participants, even as photovoice research strives for authenticity, inclusivity, and empowerment. (shrink)

The need to understand the systems that support ethical health research has long been recognized, but there are limited descriptions of actual health research ethics (HRE) systems. Using participatory network mapping methods, we empirically defined Malaysia's HRE system. 13 Malaysian stakeholders identified 4 overarching and 25 specific HRE system functions and 35 actors internal and 3 external to the Malaysian HRE system responsible for those functions. Functions requiring the most attention were: advising on legislation related to HRE; optimizing research value (...) to society; and defining standards for HRE oversight. Internal actors with the greatest potential for more influence were: the national network of research ethics committees; non-institution-based research ethics committees; and research participants. The World Health Organization, an external actor, had the largest untapped potential for influence overall. In summary, this stakeholder-driven process identified HRE system functions and actors that could be targeted to increase HRE system capacity. (shrink)

Health research ethics training programmes are being developed and implemented globally, often with a goal of increasing local capacity to assure ethical conduct in health-related research. Yet what it means for there to be sufficient HRE capacity is not well-defined, and there is currently no consensus on outcomes that HRE training programmes should collectively intend to achieve. Without defining the expected outcomes, meaningful evaluation of individual participants and programmes is challenging. In this article, we briefly describe the evolution of formal (...) education in HRE, articulate the need for a framework to define outcomes for HRE training programmes, and provide guidance for developing HRE competency frameworks that define outcomes suited to their contexts. We detail critical questions for developing HRE competency frameworks using a six-step process: define the purposes, intended uses and scope of the framework; describe the context in which practice occurs; gather data using a variety of methods to inform the competency framework; translate the data into competencies that can be used in educational programmes; report on the competency development process and results and evaluate and update the competency framework. We suggest that competency frameworks should be feasible to develop using this process, and such efforts promise to contribute to programmatic advancement. (shrink)