By Natasha Mack, PhD, Linguistic Anthropologist, Family Health International
Repeated messages do not need to be supported by evidence to be believed by the public. Once people have formed a strong opinion, new evidence is generally made to fit, contrary information is typically filtered out, ambiguous information is interpreted as a confirmation, and consistent information—even through the repetition of inaccuracies or misinformation—is seen as “proof positive,” making such messages virtually impossible to correct later (Shepherd 2005).
Words and phrases used repeatedly to talk about a given theme can help frame or shape the perception of a trial’s ethics, often tapping into an underlying cultural narrative or discourse on research exploitation. Media persistently use science exploitation and negative discourses on HIV as “frames” for their stories, drawing on familiar stereotypes, interpretations, and storylines in ready-made formulas (Kitzinger 2000).
For example, media coverage in 2005 on the oral tenofovir trial in Cameroon tapped into public emotions about exploitation through the use of trigger phrases such as “guinea pigs” that instantly tell audiences to interpret a news story as yet another exploitation narrative. Our search of the term “guinea pig” in PubMed (1950 to present) and other databases located academic and news articles laced with similarly charged vocabulary, including “torture,” “Nazi Germany,” “conspiracy,” and “Tuskegee.” In using trigger vocabulary, the media and the HIV activists it quoted aligned the news stories of the Cameroon trial with other narratives about global exploitation in clinical research (Jones 1993).
Researchers who work in places where the media use negative frames or trigger words should make it clear that they are working for the benefit of trial participants and others at risk. Speaking with candor and integrity about their motivations for improving public health is a powerful antidote to negative messages.
Adapted from: N Mack et al. The Exploitation of “Exploitation” in the Tenofovir PrEP Trial in Cameroon: Lessons Learned from Media Coverage of an HIV Prevention Trial. Journal of Empirical Research on Human Research Ethics (JERHRE). In press, June 2010.