title: 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.
authors.affiliation: a Graduate School of Public Health, Health Promotion & Behavioral Science , San Diego State University , San Diego , CA , USA.|b Division of Global Public Health, School of Medicine , University of California , La Jolla , CA , USA.
authors.forename: Elizabeth
authors.initials: E
authors.lastname: Reed
authors.affiliation: c Department of Psychology , Fordham University , New York , NY , USA.
authors.forename: Celia B
authors.initials: CB
authors.lastname: Fisher
authors.affiliation: d Department of Sociology , American University , Washington , DC , USA.
authors.forename: Kim M
authors.initials: KM
authors.lastname: Blankenship
authors.affiliation: b Division of Global Public Health, School of Medicine , University of California , La Jolla , CA , USA.
authors.forename: Brooke S
authors.initials: BS
authors.lastname: West
authors.affiliation: e Yale School of Public Health , New Haven , CT , USA.
authors.forename: Kaveh
authors.initials: K
authors.lastname: Khoshnood
mesh_terms: D000328:Adult; D002986:Clinical Trials as Topic / Q000941:ethics; D032984:Ethics, Research; D005260:Female; D015658:HIV Infections / Q000517:prevention & control*; D006801:Humans; D007088:Illusions; D007194:India; D007258:Informed Consent / Q000941:ethics; D009042:Motivation; D035842:Research Subjects / Q000523:psychology*; D060386:Sex Workers; D035862:Vulnerable Populations; D055815:Young Adult
keywords: HIV; female sex workers; research ethics