"Speaking the dialect": understanding public discourse in the aftermath of an HIV vaccine trial shutdown

Objectives. We investigated how persons from key populations at higher risk of HIV exposure interpreted the process and outcomes of the Step Study HIV-1 vaccine trial, which was terminated early, and implications for willingness to participate in and community support for HIV vaccine research.Methods. We used qualitative methods and a community-based approach in 9 focus groups (n = 72) among ethnically and sexually diverse populations and 6 semistructured key informant interviews in Ontario, Canada, in 2007 to 2008.Results. Participants construed social meaning from complex clinical and biomedical phenomena. Social representations and mental models emerged in fears of vaccine-induced infection, conceptualizations of unfair recruitment practices and increased risk behaviors among trial participants, and questioning of informed consent. Narratives of altruism and the common good demonstrated support for future trials.Conclusions. Public discourse on HIV vaccine trials is a productive means of interpreting complex clinical trial processes and outcomes in the context of existing beliefs and experiences regarding HIV vaccines, medical research, and historical disenfranchisement. Strategic engagement with social representations and mental models may promote meaningful community involvement in biomedical HIV prevention research.Scientific discourse, including studies and commentaries circulated in peer-reviewed medical and public health journals, reveals sometimes-contentious disagreement among biomedical researchers, public health officials, and clinicians, particularly at the vanguard of discovery. In the context of HIV vaccine research, opposing views have characterized the soundness of scientific and economic rationales for launching large-scale clinical trials^1–4 and interpretation of trial results.^5–7 It is nevertheless a basic tenet of scientific discourse that clinical trials, the majority of which do not result in an efficacious product, are mechanisms to inform evolving discovery.Contested clinical trials and biomedical outcomes also may constitute controversial social phenomena. Yet throughout a history of international HIV chemoprophylaxis trial shutdowns and sometimes-acerbic debate,^4,8,9 considerably less attention has focused on the social processes and outcomes of clinical trials; these too might be used to advance an evolving social science of biomedical HIV prevention research, including evidence to support critical processes of knowledge translation and community engagement.^9,10