Privacy and intrusion in ethnographic health research

Abstract

Privacy is a broad concept that encompasses spatial, psychosocial and moral dimensions. The author draws on two examples of ethnographic studies to highlight privacy concerns. She frames the discussion by using the categories of physical, informational, proprietary and decisional privacy. The first study of a case of life support withdrawal after severe traumatic brain injury (TBI) raises four key points: (1) cultural norms in the setting dictate practices and perceptions of invasions of privacy, (2) dual roles allow access to private spaces, (3) the topic of the research can itself be a private matter and (4) inadvertent lapses in privacy are possible even with careful consideration and safeguards. The second study which is an ongoing examination of long-term adjustment to TBI in Kolkata, India raises a different set of issues: (1) differences in norms regarding physical privacy need to be negotiated, (2) the signing of consent forms can feel intrusive to persons unfamiliar with this process, (3) privacy and trust are inextricably linked and (4) norms of disclosure also affect the researcher. Recommendations are made for negotiating the complex nature of privacy and intrusion in ethnographic work.

Citation

Mukherjee, D. (2008), "Privacy and intrusion in ethnographic health research", Jegatheesan, B. (Ed.) Access, a Zone of Comprehension, and Intrusion (Advances in Program Evaluation, Vol. 12), Emerald Group Publishing Limited, Leeds, pp. 83-96. https://doi.org/10.1016/S1474-7863(08)12005-1