Building bridges between the global south and north in research ethics

By Cory Goldstein, Tiwonge Mtande, and Charles Weijer.

How does successful international collaboration in research ethics happen? We would like to share our experience.

Tiwonge Mtande’s Perspective:

I am a health researcher working at UNC-Project Malawi in Lilongwe, Malawi.

In November 2017, while I was working on my Master’s degree, my supervisor, Prof. Doug Wassenaar, principal investigator at SARETI, encouraged me to apply to the Global Forum on Bioethics in Research meeting in Bangkok, Thailand. The theme of the Forum’s meeting was the “Ethics of alternative clinical trial designs and methods in low- and middle- income country research.” Partly due to my involvement in the PURE Malawi trial, I decided to apply.

My application was accepted, and I was invited to attend. During the meeting, we were divided into small groups for discussions. Dr. Charles Weijer happened to be leading our group’s discussions throughout the two-day meeting. Our interests were well aligned—he’s a co-principal investigator on a CIHR-funded project that aims to develop an ethical framework for the design and conduct of pragmatic cluster randomized trials—so I sought to connect with him for mentorship.

Fortunately, the Forum offers fellowships to support international collaboration. I received one of these fellowships, and travelled from Malawi to work with Dr. Weijer and his doctoral student, Cory Goldstein, at the Rotman Institute of Philosophy in London, Canada for the month of June 2018. The first thing I noticed about Canada was everyone’s friendliness! At the airport, at my residence, and at the Rotman Institute, everyone was supportive and kind. Canada didn’t feel like a strange country even though it was my first time there.

Cory Goldstein’s Perspective:

I am a doctoral candidate in the Rotman Institute of Philosophy at Western University in London, Canada.

Like Tiwo, I applied for and was invited to attend the Global Forum meeting in Bangkok. Part of the meeting focused on my thesis topic, namely, ethical issues in pragmatic cluster randomized trials in hemodialysis facilities.

Six months later, when I heard that Tiwo’s fellowship application was accepted, I was thrilled! Tiwo and I worked about 10 feet from each other in an open-concept workspace. We chatted daily at our desks and over coffee. While we certainly talked about research ethics, we also talked about the differences between life in Malawi and life in Canada—mostly, to her amazement, how the sun rises around 5:45 a.m. and sets around 9:00 p.m. in June.

I learned a lot from Tiwo. She was involved in the day-to-day activities of the PURE Malawi trial, and worked closely with the principal investigators. I was grateful to learn about her experiences with the trial, specifically, the complexity involved in obtaining research ethics committee approval. In Canada, we usually obtain approval from one central committee. In Malawi, by contrast, researchers often need to obtain approval from national committees, funding committees, and local committees.

Tiwo returned to Malawi at the end of June with a solid draft of a manuscript. Over the next several months, more drafts were shared between Tiwo, her colleagues, Dr. Weijer, and myself. Everyone provided feedback on these drafts, and everyone’s contribution made the manuscript stronger.

Our perspective:

Our collaboration resulted in a publication in the Journal of Medical Ethics, entitled “Ethical issues raised by cluster randomized trials conducted in low-resource settings: identifying gaps in the Ottawa Statement through an analysis of the PURE Malawi trial.” This publication aims to show how current ethical guidance is useful but limited in the context of low-resource settings. It concludes that future work is needed to improve upon existing ethical guidance.

Reflecting on our experiences together has taught us that this publication would not have been the same without international, interdisciplinary collaboration. Some of us offered firsthand experience with health research in low-resource settings, while others offered experience in thinking through ethical issues in pragmatic trials.

 

Paper title: Ethical issues raised by cluster randomized trials conducted in low-resource settings: identifying gaps in the Ottawa Statement through an analysis of the PURE Malawi trial.

Author(s):
Cory E. Goldstein1; Tiwonge Mtande2; Charles Weijer1

Affiliations:
1 Rotman Institute of Philosophy, Western University, London, Ontario, Canada.
2 UNC-Project Malawi, Tidziwe Centre, Private Bag A104, Lilongwe, Malawi.

Competing interests: CW receives consulting income from Eli Lilly & Company Canada.

Social media accounts of authors: @coryegoldstein; @MtandeTiwonge; @charlesweijer

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