The Exploitation of “Exploitation” in the Tenofovir PrEP Trial in Cameroon: Lessons Learned from Media Coverage of an HIV Prevention Trial

Abstract

media coverage influences how clinical trials are perceived internationally and in communities where trials occur, affecting recruitment, retention, and political support for research. We conducted a discourse analysis of news coverage from 2004-2005 of a trial in Cameroon on oral PrEP for HIV prevention, to identify messages, communication techniques, and sources of messages that were amplified via media. We identified two parallel discourses: one on ethical concerns about the Cameroon trial, and a second, more general "science exploitation" discourse concerned with the potential for trials with vulnerable participant populations to be conducted unethically, benefiting only wealthy populations. Researchers should overtly address exploitation as an integral, ongoing component of research, particularly where historical or cultural conditions set the stage for controversy to emerge.

Maximising the value of combining qualitative research and randomised controlled trials in health research: the QUAlitative Research in Trials (QUART) study – a mixed methods study

“…94 The second driver was the closure of a trial and how media portrayal influenced the closure or could influence the viability of future trials by raising the issue of these trials being unacceptable in principle. 95,96 Suggestions for good practice and maximising value ('in principle' acceptability of a trial) i. Be clear about the research questions.…”

“…Others had limited conclusions and reflections for trials, leaving the reader wondering what action triallists might take in response to the findings. l Some researchers were explicit about being driven by a question they wanted to know the answer to, 93,94,96 making it easier to understand the findings and their implications.…”

A research alliance

“…4 Like most involved at that time, we were trying to make sense of these closures, and we found ourselves tracking how varying analyses of 'what happened' were circulating on a global level. In doing so, we had to pay attention to AIDS advocate and scientific networks (Grant et al 2005;Mills et al 2005;Mack et al 2010). We found it curious that these stories pertained mostly to the Cambodia and Cameroon sites, where sex workers and AIDS activists had pushed the PIs to address the problems that each group had found with the trial protocol.…”

An interdisciplinary framework for measuring and supporting adherence in HIV prevention trials of ARV‐based vaginal rings

“…how biological specimens will be used) [9], concerns about product safety [10] and distrust of the motivations of researchers and trial sponsors (e.g. motivated by negative values such as greed and racism) [9, 11, 12] are frequently described for HIV prevention research participants and communities. For women, decisions about whether and what to disclose to male partners about product use and research participation reflect culturally regulated gender dynamics that can either generate support or create obstacles for a woman's decision to participate in a trial and adhere to product use [10, 13–17].…”