Yale University

Confidentiality, privacy, and respect.

TitleConfidentiality, privacy, and respect.
Publication TypeJournal Article
Year of Publication2014
AuthorsReed, Elizabeth, Kaveh Khoshnood, Kim M. Blankenship, and Celia B. Fisher
JournalJournal of empirical research on human research ethics : JERHRE
Volume9
Issue1
Pagination19-28
Date Published2014 Feb
ISSN1556-2654
AbstractFemale sex workers (FSWs) 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 FSWs 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 FSWs.
DOI10.1525/jer.2014.9.1.19
Alternate JournalJ Empir Res Hum Res Ethics

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