Confidentiality, Privacy, and Respect: Experiences of Female Sex Workers Participating in HIV Research in Andhra Pradesh, India

Abstract

Female sex workers (FSW) from Andhra Pradesh, India who had participated in HIV research were interviewed to examine participant perspectives on research ethics. Content analysis indicated that aspects of the consent process, staff gender and demeanor, study environment, survey content, time requirements for study participation, and perceived FSW community support for research were key factors influencing whether FSW perceived their confidentiality and privacy had been maintained, and whether they felt the study was conducted respectfully. Findings suggest that partnership with community-based organizations and investigation of participant’s experiences in HIV prevention research can provide critical information to best inform research ethics protocols, a particular priority among research studies with highly stigmatized populations, such as FSW.

Efficacy of an Educational Intervention to Increase Consent for HIV Testing in Rural Appalachia

“…Furthermore, she met each participant in the waiting room and shook their hand and said, “I am very happy that you are here to talk with me today.” She also told them at the beginning of the session that they could ask any questions at any time throughout the session. These simple steps helped produce a respectful study environment, which likely positively influenced participants decision to participate in the HIV testing portion of the study as it has among other disadvantaged groups, including female sex workers in India (Reed, Khoshnood, Blankenship, & Fisher, 2014) and the Philippines (Urada & Simmons, 2014). …”

Peruvian Female Sex Workers’ Ethical Perspectives on Their Participation in an HPV Vaccine Clinical Trial

“…These feelings can place social and structural constraints on FSW participation in research studies. To facilitate participation of this population in research, FSWs must feel respected and perceive that their confidentiality and privacy are being maintained (Reed, Khoshnood, Blankenship, & Fisher, 2014). Furthermore, feelings of respect and trust in confidentiality is influenced by the consent process, staff gender and demeanor, the study environment, time requirements for study participation, survey content, and perceived community support for FSW involvement in research (Reed et al, 2014).…”

“…To facilitate participation of this population in research, FSWs must feel respected and perceive that their confidentiality and privacy are being maintained (Reed, Khoshnood, Blankenship, & Fisher, 2014). Furthermore, feelings of respect and trust in confidentiality is influenced by the consent process, staff gender and demeanor, the study environment, time requirements for study participation, survey content, and perceived community support for FSW involvement in research (Reed et al, 2014). Key benefits of participation perceived by FSWs participating in sexual health research includes access to HIV prevention and testing as well as positive and trusting relationships between sex workers and research teams (Goldenberg, Rivera Mindt, Rocha Jimenez, Brouwer, Morales Miranda, & Fisher, 2015/this issue).…”

Enhancing the Responsible Conduct of Sexual Health Prevention Research Across Global and Local Contexts: Training for Evidence-Based Research Ethics

“…The Sunflower Study was unique in providing all participants with HPV testing, treatment for those testing positive, and access to the vaccine for all testing negative. Despite differences in locale, a research focus on HIV versus HPV prevention, and experience participating in sexual health studies, participants’ ethically relevant concerns in many cases paralleled those reported in the Goldenberg et al study and in previous research conducted by RETI fellows (Reed, Khoshnood, Blankenship, & Fisher; 2014; Urada & Simmons, 2014). In relating their experiences, Brown and his colleagues found that FSWs reflected on both the perceived health benefits of participating in the study as well as fears about learning they might test positive for HPV, HIV, or other sexual health diseases.…”