Official websites use. Share sensitive information only on official, secure websites. Participants were recruited through mailing lists and contacts with existing sex work networks. In total, 74 responses from Europe, the Americas and Asia were received. Thirty percent of respondents reported first-hand involvement in biomedical HIV prevention trials. Seventy percent indicated a lack of familiarity with codes of ethics for research.
This paper focuses exclusively on communication issues described in survey responses. Communication was an important theme: the absence of clear communication between trial participants and investigators contributed to premature trial closures in at least two sites. Sex workers had recommendations for how researchers might implement GPP through improved communication, including consultation at the outset of planning, explaining procedures in non-technical terms and establishing clear channels for feedback from participants.
The closures of biomedical human immunodeficiency virus HIV prevention trials involving sex workers in Cameroon [ 1 ] and Cambodia [ 2 ] in were unprecedented: no previous trials had been halted due to community and participant protest. The closures indicated that current procedures to protect research participants such as human subjects review boards and 20th century codes for research ethics such as the Declaration of Helsinki [ 3 ] may not be adequate [ 4 ].
However, subsequent analysis of the trial closures emphasized a dominant perception among researchers that sex workers were against research [ 5 , 6 ] rather than addressing the legitimate ethical concerns expressed by sex workers [ 7 ].
While these guidelines have and continue to evolve from a series of principles to a set of standards in line with standards for good clinical practice, in their early incarnation these guidelines articulated 10 primary principles for successful participatory practice within trials: scientific and ethical integrity, respect, clear roles, shared responsibility, participatory management, autonomy, transparency, a standard of prevention, access to care and building research literacy.
