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Principal Investigators: Elysée Nouvet, McMaster & Lisa Schwartz, McMaster

Research snapshot: Ethical research during a crisis: Insights from the West African Ebola epidemic

Understanding diverse and context-specific influences impacting engagements with research, and clear, consistent communication are key to effective collaboration and ethical best practices during the conduct of essential research in public health emergencies.

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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.

Publications

Impact Case Study Ebola, Ethics Related

Impact Case Study: Retrospectively exploring research ethics during the Ebola epidemic

Article Ebola

Participants’ Perceptions of Ebola Research Report to participants

Literature Review Ebola

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

Briefing Note

From Tokenism to Meaningful Partnerships

Case Study Ebola, Ethics Related

Participation Case Study: Perceptions of research conducted during the 2014-2016 Ebola crisis

Latest Updates

Research Impact Case Study Published

Aug 2023

This study was selected by the R2HC for our Impact Case Study series. The case study is now available to view online.

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2023Aug

Television and Ebola

Jan 2018

How televisions can change disease perception & reduce stigma

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2018Jan

How can cultural history of ‘health’ change disease perception & reduce stigma?

Dec 2018

A brief comparison of Influenza, 1918-1919, and Ebola, 2014-2015

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Dec

The challenges of developing a career as an anthropologist and qualitative health researcher in post-Ebola Guinea

May 2018

The Guinean post-Ebola research landscape Following Guinean independence, Guinea’s leaders favoured the development of technical and professional schools meant to train specialists and professionals to take over the roles formerly…

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May

Listening to Those Who Lived Through Ebola Trials First-hand

Aug 2017

As part of a qualitative study, since December 2016 we have been gathering accounts of research conducted during the West Africa Ebola outbreak. Our focus is on stakeholders in Guinea,…

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2017Aug

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