Perceptions of policymakers and ethicists on ethical considerations in the conduct of research during disease outbreaks in Nigeria

Abstract

Background There is a dearth of literature on the perspectives of stakeholders from countries in Africa on the institution of a research culture as part of a holistic system of pandemic preparedness and response. This study aimed to explore the perspectives of policymakers, representatives from Research Ethics Committees (RECs), and international bioethics experts on the ethics of conducting research during infectious disease outbreaks in Nigeria. Methods We conducted structured interviews with six policymakers actively engaged in disease outbreak response. The interview themes included systems and structures for research, local researcher competency, regulatory oversight, study types, ethical review approaches, and integrating research into outbreak response. We further engaged 12 participants including REC members from Nigeria and Liberia, international bioethics experts, and study co-investigators in a structured discussion to appraise and expand on themes identified during the interviews at a 2-day meeting in December 2018. We also held two virtual consultations afterwards. The findings from these processes were synthesized to develop a comprehensive report. Results Participants stressed the significance of conducting research during disease outbreaks to understand causal factors, evaluate public health measures, and inform future prevention and treatment strategies, and identified the need for clear ethical guidelines for RECs during outbreaks. Participants proposed a sliding scale for prioritizing categorized studies, emphasizing immediate solutions over future-focused research. Discussants proposed a "systems approach" to ethics review, emphasizing interdependence, governance structures, communication infrastructure, effective communication with policymakers, and a funding structure. Conclusion Conducting ethical research during disease outbreaks requires a comprehensive, context-dependent approach, involving stakeholders, and ensuring robust ethical oversight through proficient RECs. The proposed "System Approach" offers a model for sustainable and effective ethics review during outbreaks, fostering locally relevant and socially valuable research while prioritizing the well-being of research participants and communities.