Ethical Considerations of Community-based Participatory Research: Contextual Underpinnings for Developing Countries

BACKGROUND The nature of community-based participatory research (CBPR) poses distinctive ethical challenges. In the absence of organized guidelines, a remarkable amount of researchers' time and energy will be spent tackling these ethical challenges. The study aimed to explore ethical issues and principles potentially arising when conducting CBPR. METHODS This qualitative study conducted in CBPR Center of Tehran University of Medical Sciences. Required data were gathered through systematic literature review and semi-structured interviews. Representatives of community, academia, and nongovernmental organizations (NGOs) participated in our study. Ten interviews with representatives of partner organizations, four group interviews with academic staff, and four with representatives of community were conducted. Repeated thematic analysis was used to elicit ethics-related overarching themes from transcribed interviews. As recommendations, these themes were then organized into a set of CBPR-related ethical issues and principles. RESULTS Four CBPR ethical guidelines (including 173 articles) were selected from a systematic review. Overarching themes relating to ethical principles which emerged from interviews were as follows: Trust, transparency and accountability, equity and inclusion, power imbalance, tolerance and conflict management, and attention to cultural sensitivity. Practical principles that emerged included: Consensus rather than informed consent, ownership of data and research achievements, and sustainability and maintenance of relationships. According to findings and in comparison to international guidelines, the present study put more emphasis on cultural sensitivity and sustainability as CBPR ethical tangles. CONCLUSIONS Community-based participatory research ethical challenges are of the same kind in most parts of the world. However, some discrepancies exist that calls for local scrutiny. Future use and critic of current explored ethical issues and principles are highly encouraged.