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Improving participatory
practices for sex workers' involvement in biomedical HIV prevention trials
D. Allman1, M.H. Ditmore2,3
1University of Toronto, HIV Social, Behavioural and Epidemiological Studies Unit, Toronto, Canada, 2National Development and Research Institutes, Inc., New York, United States, 3Public Health Solutions, New York, United States
Background: UNAIDS/AVAC developed Good Participatory Practice Guidelines for
Biomedical HIV Prevention Trials (GPP) in order to provide systematic guidance
regarding researchers' roles and responsibilities toward participant
communities. As sex workers are a population frequently targeted for
involvement in biomedical HIV prevention trials, this project investigated sex workers' reactions to involvement in such trials in general, and
knowledge of the GPP's core guiding principles specifically. Methods: A 33-question survey addressing 10 core principles of GPP were
conducted in English, French, and Spanish. Most were self-completed unless low
literacy levels required otherwise. Self-identified sex workers were recruited
through peer networks. Responses were received electronically, in person and on
paper. No incentives were offered. Results: Seventy-four sex workers responded to the survey. Of those indicating region of
residence, 10% were from the Asia Pacific, 15% from Latin America, 18% from
Europe and 57% from North America. 30% of participants reported first hand
involvement in biomedical HIV prevention trials. Many participants were not
opposed to co-operation with trials, but would want to learn more about research before committing. Many would consider involvement
in prevention trials provided they were confident a trial was ethical and
participatory. Improving effective communications between trial sites and
community stakeholders was identified as key. 'Respect' for members of the
community was the most important GPP principle identified by sex workers. Conclusions: In this convenience sample of sex workers, there was varied
understanding of the workings of biomedical HIV prevention trials. There was,
however, considerable understanding of the stigma and disrespect that could be
experienced by sex workers within such trial contexts. Taken together, results
suggest trial participation can be improved through techniques to help develop
greater respect for trial participants, more attention to research capacity
building, and continued translation of both standard and more complex research
processes into local languages using non-technical terms.
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