Blurring Lines: Complexities of Ethical Challenges in the Conduct of West African Ebola Research

The 2014-15 West African Ebola outbreak was the world’s largest and longest outbreak of Ebola Virus Disease (EVD). It resulted in 11315 deaths and the care management of 26350 persons over two years (Folayan et al., 2016). It was particularly damaging as it arose in the context of countries (re)building their healthcare systems following decades of under-funding and armed conflict (Upshur and Fuller, 2016). The Ebola case fatality rate is very high (Bellan et al., 2014). While recommendations do exist at this point for supportive treatment that have been shown to optimize patient chances of survival (Lamontagne et al., 2018), there exists no evidence-based treatment to cure the disease. In August 2014, WHO deemed the use of unregistered interventions to be ethical under certain conditions (Landry et al., 2015). It laid out criteria for use including urgency, transparency, fair distribution, and informed consent, and met to discuss acceptable study designs (Landry et al., 2015). WHO recommendations could only go so far in anticipating and delineating appropriate responses to the ethical challenges that emerged as clinical trials were rolled out.

The objective of this narrative review was to identify ethical challenges in the scholarly literature pertaining to the conduct of research during the 2014-2016 West Africa Ebola outbreak. Specifically, our aim was to catalogue anticipated and unexpected ethical challenges faced by research teams in the course of planning and implementing studies during this public health emergency, with the goals of producing a concise record of these that can inform preparedness for research in future similar events.