'Hold on' (Bambelela)! Lyrical interpretations of participation in an HIV prevention clinical trial.

During a five-day workshop, former clinical trial participants and local musicians wrote the lyrics and recorded a song about an HIV prevention trial. Born of concerns about misconceptions regarding experimental drug trials, the aim was to engender engagement with medical researchers and open dialogue about the risks and benefits of trial participation. Composing lyrics that highlighted their credibility as communicators of medical scientific knowledge and their selfless sacrifice to stem the transmission of HIV, women performed their social positioning and cultural authority in contrast to men as well as other women not part of the trial. While involvement in HIV prevention initiatives often attracts stigma, scorn and criticism, the song's lyrics highlighted women's new-found identities as heroines searching for a solution to the spread of HIV, challenging these stereotypes. Methodologically, the paper describes a novel approach that uses artistic expression for public engagement with biomedical research.

Adherence and the Lie in a HIV Prevention Clinical Trial.

The lie has been presented as a performance that protects identities against moral judgment in the context of power imbalances. We explore this assertion from the perspective of a pre-exposure prophylaxis trial to prevent HIV for African women in South Africa, in which context biological evidence of widespread lying about product adherence was produced, resulting in a moral discourse that opposed altruistic and selfish motivations. In this article, we seek to understand the meaning of the lie from the perspective of women trial participants. Seeing the trial as representing a hopeful future, and perfect adherence as sustaining their investment in this, participants recited scripted accounts of adherence and performed the role of the perfect adherer, while identifying other participants as dishonest. Given that clinical trials create moral orders and adherence is key to this, we argue that women embraced the apparatus of the clinical trial to assert their moral subjectivities.

Malicious whites, greedy women, and virtuous volunteers: negotiating social relations through clinical trial narratives in South Africa.

As clinical trial research increasingly permeates sub-Saharan Africa, tales of purposeful HIV infection, blood theft, and other harmful outcomes are widely reported by participants and community members. Examining responses to the Microbicide Development Programme 301-a randomized, double-blind, placebo-controlled microbicide trial-we investigate the ways in which these accounts embed medical research within postcolonial contexts. We explore three popular narratives circulating around the Johannesburg trial site: malicious whites killing participants and selling their blood, greedy women enrolling in the trial solely for financial gain, and virtuous volunteers attempting to ensure their health and aid others through trial participation. We argue that trial participants and community members transform medical research into a meaningful tool that alternately affirms, debates, and challenges contemporary social relations.

Blockage and flow: intimate experiences of condoms and microbicides in a South African clinical trial.

Based on qualitative research undertaken during a phase-three microbicide gel trial, this paper explores female participants' experiences and perceptions of gel and condom use and the opinions of their male partners and community members. Participants were aware that condoms were effective in preventing HIV infection and that the efficacy of the microbicide was unproven. Yet, in narratives about gel and condom use, participants ascribed improvements to their reproductive health and intimate relationships with men to gel use. In contrast, condoms were believed to prevent disease, yet also embodied mistrust, were believed to contain dangerous substances and were felt to block the womb. These apparently contradictory views about condoms and gels are explored in the light of conceptions of flow and blockage. Health is achieved by maintaining a steady balance of substances within the body, while preventing fluid flow results in illness. We argue that women enrolled in the trial broadened the meaning of the gel beyond its primary intended effect of preventing HIV. Through their accounts of gel use, women 'reinvented' the gel as a substance that transformed their bodies and sexual relations. This has implications for understanding how local knowledge of health and illness intersects with biomedical knowledge.

Gelling medical knowledge: innovative pharmaceuticals, experience, and perceptions of efficacy.

As new pharmaceutical products to combat the acquisition of HIV are produced, their clinical efficacy is determined through large-scale clinical trials. Trial participants, however, also independently evaluate the effectiveness of these technologies. During a phase III microbicide clinical trial in Johannesburg, South Africa, female participants acknowledged that although the gel had not yet been clinically proven to be efficacious, they believed that it was capable of healing infections, cleansing the vagina, increasing fertility, and preventing HIV. These responses were informed by experiences of gel use coupled with ideas regarding the flow of bodily fluids and the removal of dirt for bodily cleanliness and the maintenance of health. Examining participant responses to the gel provides insight into the relationship between knowledge and experience when utilizing previously unfamiliar biotechnologies.

Rumours about blood and reimbursements in a microbicide gel trial.

A rumour that emerged during a microbicide gel trial tells the tale of clinic staff purchasing trial participants' blood. This paper documents the rumour and explores its divergent interpretations and meanings in relation to the context of the trial and the social and economic setting at two of the trial sites (Soweto and Orange Farm) in South Africa. The article is based on qualitative research conducted during the Microbicides Development Programme (MDP) 301 trial to evaluate a microbicide vaginal gel for HIV prevention in women. The research incorporated in-depth interviews with female trial participants and their male partners, focus group discussions with male and female community members, and participant observation in the trial clinic and community setting at the two sites. The article analyses the different perspectives among the clinic staff, community and trial participants in terms of which the rumour about the exchange of blood for cash is seen as: 1) the result of ignorance of the clinical trial procedures; 2) the exploitation of poor and vulnerable women; 3) an example of young women's desire for material gain; and 4) a reciprocal exchange of 'clean blood' for cash between women trial participants and the health services. We suggest that the rumours about selling blood verbalise notions of gender and morality while also providing an appraisal of the behaviour of young women and a critique of social relationships between foreign researchers and local participants. Through stories about the clinical trial procedures and its potential reimbursements, the participants were creating and reconfiguring social relationships. Ultimately, rumours are one way in which foreign enterprises such as a clinical trial are rendered local.

A tale of two "cultures": HIV risk narratives in South Africa.

There has been a tendency for many researchers and health professionals examining HIV transmission in South Africa to focus on explanations that specifically implicate culture as a primary vector affecting the prevalence of high-risk sexual behavior, such as multiple partners, unprotected sex, and dry sex. In contrast, the residents of Orange Farm, a former informal settlement south of Soweto, portray culture as seldom, if ever, motivating actions that are associated with HIV transmission or prevention in the community. Comparing and contrasting these differing conceptions, we comment critically on the use of ideas regarding culture in explanations addressing the HIV/AIDS pandemic in sub-Saharan Africa.