Why female sex workers participate in HIV research: the illusion of voluntariness

ABSTRACT

The purpose of this study was to examine factors influencing the motivation for and perceived voluntariness of participation in non-intervention HIV research among female sex workers (FSW) in India. FSW (n = 30) who participated in non-intervention HIV studies in the previous three years were recruited from a local community-based organization. Semi-structured qualitative interviews focused on women’s personal and economic motivations for participation and their perceptions of the informed consent process. Interviews were audio-recorded, translated, transcribed, and reviewed for common themes. Content analysis indicated that while many women reported willing participation, reports of obligatory participation were also a common theme. Obligations included money-related pressures and coercion by other FSW, social pressures, not wanting to disappoint the researchers, and perceiving that they had a contractual agreement to complete participation as a result of signing the consent form. Findings suggest a need for additional efforts during and following informed consent to prevent obligatory participation in HIV research studies among FSW. Findings emphasize the importance of integrating ongoing participant feedback into research ethics practices to identify issues not well addressed via standard ethics protocols when conducting HIV research among vulnerable populations.

KEYWORDS:

• HIV
• female sex workers
• research ethics

Acknowledgments

We would like to acknowledge the contribution of the interview facilitator, Arshathunnisa Sultana Begum, for her interview skills and dedication to this work. We would also like to acknowledge Yvonne Kodl and Amanda Borsky for their contributions in coding the interview data. We are grateful for the women who participated in the study for their critical feedback, time, and effort.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This research was supported by the Fordham University HIV Prevention Research Ethics Training Institute under a grant provided by the National Institute on Drug Abuse Training Grant ([# 1R25DA031608-01], Principal Investigator, Celia B. Fisher); and also supported by the National Institute of Mental Health ([#K01MH099969], Principal Investigator, Elizabeth Reed).