Abstract

“Speaking the dialect”: public discourse in the aftermath of an HIV vaccine trial shutdown

P.A. Newman, C. Logie

University of Toronto, Faculty of Social Work, Toronto, Canada

Background: Social science research on HIV vaccine trials has focused on demographic, cognitive and social determinants of willingness to participate. We used a constructivist epistemology to explore social meanings and mental models in public discourse on HIV vaccine trials.
Methods: We conducted 9 focus groups from January-August 2009 with Aboriginal men and women, African/Caribbean women, female sex workers, injection drug users and gay men/MSM; and 6 key informant interviews with HIV researchers and service providers in Ottawa and Toronto, Canada. We used a semi-structured interview guide to explore HIV vaccine and clinical trial knowledge and beliefs, and reactions to a brief factual account of the STEP Study HIV vaccine trial terminated in November 2008. Focus groups/interviews were digitally recorded, transcribed, uploaded into NVivo and examined with narrative thematic techniques and critical discourse analysis.
Results: Focus group participant (n=72; mean age=39 years; 60% women; 68% ethnic minority; 50% lesbian/gay/bisexual) narratives revealed disjunctures between public and biomedical interpretations of ostensibly the same phenomena in a coherent counter-narrative to biomedical discourse. Trial recruitment, perceived as targeting “black bodies” versus “college girls,” was seen from a social justice rather than a biostatistical perspective. Informed consent was judged disingenuous in light of unforeseen trial risks, with ascriptions of omniscience to medical researchers. HIV infections among trial participants were attributed to misconceptions of the trial vaccine as a “superman suit”; increased susceptibility to HIV infection was construed as vaccine-induced infection.
Conclusions: Public discourse on HIV vaccine trials reveals attempts to construct social meaning out of complex clinical trial processes and outcomes. Social meanings and mental models of HIV vaccine trials emerge in the context of existing beliefs, conceptions and experiences viz. HIV vaccines, medical research and historical disenfranchisement. Understanding public discourse can provide a foundation for effective community engagement, informed consent, risk mitigation and knowledge translation in HIV vaccine trials.