Confidentiality, privacy, & respect: Perspectives of female sex workers participating in HIV prevention research in Andhra Pradesh, India
Tuesday, November 5, 2013
: 8:50 a.m. - 9:10 a.m.
Elizabeth Reed, ScD, MPH
, Prevention and Community Health, George Washington University School of Public Health and Health Services, Washington, DC
, Department of Sociology, American University, Washington, DC
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.
Ethics, professional and legal requirements
Public health or related research
Social and behavioral sciences
Identify whether standard study protocols adequately address the ethical principles of confidentiality, privacy, and respect among female sex workers (FSW) participating in HIV prevention research.
Describe the experiential aspects of HIV prevention research participation among FSW.
Discuss ways in which the design of future research protocols can lead to improvements in the ethical conduct of HIV prevention research among FSW.
Keyword(s): HIV/AIDS, Research Ethics
Presenting author's disclosure statement:
Qualified on the content I am responsible for because: My research interests have centered on social, economic, and contextual determinants of health, with a specific focus on the prevention of HIV and violence against women across global settings. As part of this work, I have initiated investigation of research ethics issues pertinent to research conducted among high HIV risk populations of women.
Any relevant financial relationships? No
I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines,
and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed
in my presentation.