Good Practice for Sex Workers Participation in Biomedical HIV Prevention Trials

GPP Partner Programmatic Report for the AIDS Vaccine Advocacy Coalition (AVAC).

After premature closures of biomedical HIV prevention trials, many of which involved sex workers, consultations to establish better participatory guidelines for such trials were undertaken by UNAIDS. As a follow up process, this project investigated what sex workers know about research ethics and view as important for good participatory practice. Researchers consulted with sex workers around the world via electronic communication. Additionally, informal discussions were conducted. Discussion was based on criteria identified by UNAIDS and AVAC. A 33‐ question survey and discussion guide was available in English, Spanish, French and Portuguese. No incentives were offered.

In total, 74 responses were received of which 51.4% (n=38) were fully complete. Responses came from Asia Pacific (10.3%), Latin America (14.7%), Europe (17.6%) and North America (57.4%). No online responses were received from Africa. 30.6% of respondents reported first hand involvement in biomedical HIV prevention trials. Most (70.0%) were unaware of the Helsinki Declaration, indicating a lack of familiarity with codes of ethics for research. Respondents expressed strong ideas about research with sex workers. Responses clarified that while some sex workers are against any cooperation with clinical trials and in some cases, all forms of invasive research, most were not. Indeed, many wanted to learn more about research and would consider involvement in research providing they were confident it was ethical and participatory. Many had recommendations for researchers hoping to work with sex workers such as involving stakeholders from the outset, explaining procedures in nontechnical terms and translating all materials and information into local languages. (summary author's own)