Researching privacy in HIV care: an ethnographic analysis of methods

Abstract

Three significant difficulties in the study of privacy are minimising the priming of enhanced privacy sensitive responses; studying privacy sensitive groups and topics; and studying privacy behaviours rather than attitudes. This article analyses these challenges ethnographically using two empirical studies on technology development and use in HIV care. In doing so the authors examine how researchers and participants enact privacy practices in relation to privacy sensitive issues. Drawing on experiences in relation to qualitative research practices and ethical procedures focus on four themes: the role of institutional, organisational and personal gatekeepers; identity politics around research topics, researchers and participants; the temporal and spatial contingency of access and disclosure; and micro-negotiations around privacy in interview settings. In conclusion they ask what this analysis can contribute towards tackling methodological problems in privacy research more broadly.