Perceptions of research conducted during the 2014-15 Ebola crisis

What did the study set out to achieve?

This qualitative study aimed to investigate whether WHO and international research ethics guidelines were feasible, sufficient, and lived as best practice across diverse West African contexts during the Ebola crisis 2014-16. Specifically, it explored what upholding standards of ethical research actually meant during the Ebola outbreak, in the eyes of those directly involved in this research or its oversight.

A literature review was successfully conducted. This was followed by over 100 in-depth interviews with Ebola survivors from Sierra Leone, Guinea, and Liberia, and those involved in the response and in conducting research. Information was grouped into a number of themes: context-specific accounts of ethics guidelines in clinical trials; barriers to and strategies for harmonising with WHO and other ethics standards; lessons learned or issues experienced by participants; complexities of ethics governance and of international research collaborations in a public health crisis situation.

What were the key findings?

Meaningful consent

• A range of motivations led people to take part in research. Many believed that yet-unproven treatments
  would be more effective than the standard of care.
• Illness and stress in Ebola Treatment Centres contributed to imperfect consent processes. Some participants took part due to a perceived lack of choice, feeling that they would ‘enter a trial or die’.

Communication

• Some Ebola survivors are unsure of what, if any, experimental treatments they received. Lack of communications about Ebola research processes and findings left some participants feeling confused, concerned, or betrayed.

Collaboration

• Ebola research strengthened health research infrastructure and up-skilled local personnel. But the rapid influx of international researchers worsened power imbalances and undermined existing capacity. Few opportunities arose for local actors to lead studies.

What does this mean for policymakers and practitioners?

To build trust, support free and informed consent, and avoid preventable harm to research participants, research teams working in public health emergencies should:

• Ensure all research and care personnel understand and emphasize to potential participants the voluntary nature of research participation, and the distinction between care and research.
• Partner with survivors and community leaders to identify best verbal and non-verbal communication strategies in context to support informed and voluntary research participation decision-making.
• Before in-country research approval, engage with representatives of communities from whom research participants are to be recruited: to clarify potential ethical challenges and mitigation strategies informed by community expertise.
• Ensure access to care is neither contingent on research participation or perceived as such.
• Ensure that potential participants isolated in treatment units can easily communicate and consult with loved ones about research participation options and decisions. This can be facilitated by providing clear information in appropriate formats.
• Facilitate open lines of communication after research ends and make efforts to share findings of studies with research participants.
• Policymakers could maintain and build on the research and community engagement expertise built under difficult circumstances by funding research institutions and programs in Ebola affected countries.