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How can research ethics committees help to strengthen stakeholder engagement in health research in South Africa? An evaluation of REC documents

A Wilkinson, C Slack, C Crews, N Singh, J Salzwedal, D Wassenaar

Abstract


Background. All health researchers in South Africa (SA) are explicitly encouraged by the ethicolegal framework to engage stakeholders meaningfully in their research. Research ethics committees (RECs) have a role to play in shaping researchers’ practices in this regard, but very little research has explored how RECs might best achieve this. 

Objectives. To explore whether SA REC documents are prompting researchers to plan sound stakeholder engagement in health research. 

Methods. We reviewed publicly available documents of RECs registered with the SA National Health Research Ethics Council. Of the 46 registered RECs as of November 2019, the documents of 37 were publicly accessible. These comprised 72 documents (e.g. standard operating procedures and application forms). We coded these according to ethical reasons mentioned for engagement, stakeholders and strategies highlighted for engagement. We used semantic coding, staying close to the actual wording of REC documents. We utilised thematic analysis to identify key themes. 

Results. We found that many REC documents encouraged researchers to plan engagement in a way that resonates with ethics guidance (theme 1: ‘encouraging sound engagement’). However, we found many wasted opportunities in this regard (theme 2: ‘missing opportunities’). For some RECs, there was little harmonisation across their key documents regarding this important issue (theme 3: ‘moving towards harmonisation’). 

Conclusion. In the short term, we recommend that RECs should amend their application forms in particular to better ‘trigger’ researchers to thoughtfully plan sound stakeholder engagement. In the longer term, we recommend that RECs’ documents be better harmonised internally regarding their stance on stakeholder engagement.


Authors' affiliations

A Wilkinson, HIV AIDS Vaccines Ethics Group (HAVEG), School of Applied Human Sciences, College of Humanities, University of KwaZulu-Natal, Pietermaritzburg, South Africa

C Slack, HIV AIDS Vaccines Ethics Group (HAVEG), School of Applied Human Sciences, College of Humanities, University of KwaZulu-Natal, Pietermaritzburg, South Africa

C Crews, HIV AIDS Vaccines Ethics Group (HAVEG), School of Applied Human Sciences, College of Humanities, University of KwaZulu-Natal, Pietermaritzburg, South Africa; Department of Political Science, Yale College, Yale University, New Haven, USA

N Singh, HIV AIDS Vaccines Ethics Group (HAVEG), School of Applied Human Sciences, College of Humanities, University of KwaZulu-Natal, Pietermaritzburg, South Africa

J Salzwedal, AIDS Vaccine Advocacy Coalition (AVAC), New York, USA

D Wassenaar, HIV AIDS Vaccines Ethics Group (HAVEG), School of Applied Human Sciences, College of Humanities, University of KwaZulu-Natal, Pietermaritzburg, South Africa

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Cite this article

South African Journal of Bioethics and Law 2021;14(1):6. DOI:10.7196/SAJBL.2021.v14i1.00698

Article History

Date submitted: 2021-04-19
Date published: 2021-04-19

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