“It’s Almost as if Stakeholder Engagement is the Annoying ‘Have-to-do'…”: Can Ethics Review Help Address the “3 Ts” of Tokenism, Toxicity, and Tailoring in Stakeholder Engagement?

Abstract

Ethics guidance recommends that researchers engage stakeholders and that RECs review research for such engagement. The ethics review process may present a unique opportunity to support stakeholder engagement practices for HIV prevention studies. We conducted 28 interviews with experts from 12 countries to explore this issue, and analyzed the data using Thematic Analysis. We found that the value of engagement and review processes was strongly endorsed. However, we identified 3 major thematic complexities, namely: “Tokenism” where processes risk being “tick-box”; “Toxicity”, where practices may inadvertently have negative consequences; and “Tailoring”, where processes need careful variation in intensity. We make recommendations for how these “Ts” can be addressed during the review process to help contribute to thoughtful review of meaningful stakeholder engagement in research.

Invited Peer Commentary: Research Site Anonymity in Context

“…The comment also suggests that the RECs in question are perceived as far removed from the communities whose best interests they are required to protect, inviting further reflection on the role of the required layperson on every REC as prescribed by national guidance (DoH, 2015). The experienced relationship between RECs, researchers, and research communities is currently enjoying critical study (Wilkinson et al, 2021; 2022) which warrants further consideration and exploration in future empirical studies.…”

“…What the authors argue well is that they have an expectation of the need for change because, by RECs and researchers uncritically pursuing universal, arguably western-oriented ethics principles, they inadvertently promote the dominant worldview of some researchers, while showing disrespect for alternative world views. The change requested is that researchers, through engagement with their research communities should have the ethical right to argue for the naming of a research site/community if this is found to be appropriate after appropriate community engagement (Wilkinson et al, 2022). Here, we again raise the issue of the ethical standard of anonymity as applied by the specific RECs that Nduna et al (2022) refer to and which are described as if all RECs in South Africa subscribe to site anonymity without exception.…”

“…However, in our own experience, not all RECs are closed to the voices of research participants and research sites when the researchers are able to express a social worldview of partnership with the community (Wilkinson et al, 2021). However, the expectation of responsible research does mean that while we agree with the notion of de-anonymization of research sites being ethical at times, we agree that this is not always appropriate and needs to be established through careful stakeholder engagement with those involved (Wilkinson et al, 2022).…”

“…However, a researcher may disclose the identity of an individual if consent is obtained from the participant, should he/she/they opt to be identified in the research. Of note is that, while the rights of entities (including research sites) are protected under POPIA, such entities, as a collective, even though they may formally permit research to be conducted in their setting (Singh & Wassenaar, 2016) after community engagement (Wilkinson et al, 2022), they do not provide formal consent for research – this remains the prerogative of individual research participants.…”

“…The notion of relational autonomy and a communitarian approach, where community influences on the informed consent process are considered, could collectively have a direct bearing on the African context of research. This is arguably why more recent approaches and guidelines regarding research in communities emphasize the importance of prior community and stakeholder engagement (DoH, 2015; Emanuel et al, 2004; Wilkinson et al, 2022). However, the legal dimensions of consent must also be considered.…”