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

Purpose

The 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.

Outcomes

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.

Key findings

  • Therapeutic misconceptions were frequent amongst many research participants
  • Therapeutic optimism (when a research participant expects to directly benefit from the research) was common amongst research participants and West African investigators, which impacted on research staff framing and participant understanding of recruitment
  • Responsible delineation between care and research is needed to avoid situations where participation becomes the only means of accessing care.
  • Limited restitution of findings to research participants produced feelings of frustration and disappointment amongst many participants
  • International collaboration built significant local capacities in research and oversights, but further work is needed to promote more equitable sharing of authority, decision-making, and long-term benefits in such research between local and non-African researchers.

Key outputs

  • A report on research participants’ perceptions of EVD research
  • A review of the literature on ethical challenges of conducting research during the West Africa EVD epidemic
  • A briefing sheet on international research collaborations and meaningful participation of researchers based in the country/region
  • Following request for such action, a series of research participation decision-making tools (films, visual aids) are being developed (2018-2020) with and for limited literacy research participants in Ebola-affected regions
  • A number of tools/guidance notes will be produced for humanitarian practitioners, including: lessons for research ethics governance; promoting free and informed consent during public health crisis situations; guidance for humanitarian organisations on the restitution of findings and supporting participant/patient privacy.

Research snapshot

Get an overview of this research study and its findings in this research snapshot.

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Publications

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

Latest Updates

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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