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Ethics & Engagement across the Wellcome Trust Major Overseas Programmes

Exploring attitudes of research participants towards their roles and responsibilities in clinical research in Blantyre, Malawi: expectations vs reality in practice

Gertrude Banda is a GHBN Bursary Fellow

Biosketch

Gertrude Banda works in Research governance and quality at the Malawi Liverpool Wellcome Trust. A state registered Nurse midwife with a BSC in Nursing, she has vast experience working in both clinical and non-clinical trials. She is currently pursuing an MSc in Global Health Implementation at the University of Malawi. Her area of research interest is Ethics and community engagement, particularly issues surrounding ethical research participation. She's currently working on a project which is looking at roles and responsibilities of research participants in research. 
Email: gtbanda[at]mlw.mw

Project Summary

The roles and responsibilities of researchers, research institutions, sponsors, review boards, etc, are cited in a number of publications but there is very little literature on the responsibilities of research participants. The project specifically looks to: 1) Explore research participants' knowledge on their roles and responsibilities in research; 2) Understand investigators' expectations regarding the roles and responsibilities of participants; 3) Explore views of participants and researchers regarding what they consider as ethical participation; 4) Identify any similarities or differing views between groups participating in the study. 

This qualitative study will use in depth interviews and focus group discussions. Topic guides will be formulated from the literature review and be modified as necessary during the progression of the study. 

Project progress (early 2020)

Application to Ethics committee in Malawi and Liverpool is underway and will be done between April and June 2020 including all local regulatory or institutional approvals. Data collection is expected to commence in July 2020. Preliminary results are anticipated six months after commencement of Data collection. Challenges foreseen are delays in getting approval due to the Covid-19 pandemic because most institutional operations are heavily affected. If the situation does not normalise quickly data collection may also be affected due to limited mobility hence disturbances in the study timelines.

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