Last year, researchers Dan Allman and Melissa Ditmore started a project asking sex workers about their experiences with and opinions about clinical trials, which they’ve turned into a 65 page report, Good Practice for Sex Workers’ Participation in Biomedical HIV Prevention Trials. The main mission of the project was to get feedback from sex workers about their experiences with researchers, and to encourage researchers to examine their practice and involve sex workers in the process. This is great stuff – I would love to see greater integration of communities in the process of research done about them. The Institutional Review Board, as much as anyone doing human subjects research bemoans the process, is a step in the (general) right direction, but community input is so important to creating sound research.
Here’s some of what the researchers learned from the project:
One important finding: Sex workers are not usually familiar with documents about trials and ethics. This is not obvious to researchers. And it means that a lot more education about research is critical to ‘good participatory practice’.
Many sex workers had recommendations for researchers hoping to work with sex workers such as involving stakeholders from the outset, explaining procedures in non-technical terms and translating all materials and information into local languages. More recommendations are in the report.
One of the ten recommendations is to consult local sex workers at each proposed location before beginning a trial. Acceptance and use of recommendations of local sex workers, and consideration of accommodations necessary for the lives of local sex workers will facilitate the research. 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.
Download the PDF of the report here.