Confidentiality, privacy, & respect: Perspectives of female sex workers participating in HIV prevention research in Andhra Pradesh, India

Background: HIV is of critical concern in Andhra Pradesh, India, largely affecting high risk subgroups, including female sex workers (FSW). Given the immense consequences of stigma associated with identification as a sex worker (e.g. violence, arrest), confidentiality, privacy, and respect are a priority in the development of HIV prevention research protocols. The current study examines qualitatively whether these critical aspects of research ethics were addressed adequately among FSW who have participated in HIV prevention studies in this region. Method: FSW (n=30) reporting recent (previous three years) involvement in HIV prevention research were recruited from a community-based organization. Semi-structured qualitative interviews were audio-taped, translated, and transcribed. Content analysis yielded common themes particular to confidentiality, privacy, and respect. Results: Aspects of the consent process, staff gender and demeanor, study environment, survey content, and time requirements for study participation were key factors influencing whether FSW perceived their confidentiality and privacy had been maintained, and whether they felt the study was conducted respectfully. Notably, FSW community support for research also promoted women's reports of feeling respected during research participation. Conclusion: The current study is among the first to document the experience of HIV prevention research participation among FSW, and highlight how such investigation may inform the development of future research protocols to improve the ethical conduct of these research studies. Furthermore, based on women's reports, some aspects of study implementation outside of the written protocol (e.g. staff payment method) also appear to have an influence on the ethical conduct of the study.