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Updated: Apr 21, 2026

Using Visual and Narrative Methods to Achieve Fair Process in Clinical Care
Published on: February 16, 2011
Disease, communication, and the ethics of (in) visibility
Monika Monika Pietrzak-Franger1, Martha Stoddard Holmes
1Department of English and American Studies, University of Hamburg, Von-Melle-Park 6, 20146, Hamburg, Germany.
Abstract:
As the recent Ebola outbreak demonstrates, visibility is central to the shaping of political, medical, and socioeconomic decisions. The symposium in this issue of the Journal of Bioethical Inquiry explores the uneasy relationship between the necessity of making diseases visible, the mechanisms of legal and visual censorship, and the overall ethics of viewing and spectatorship, including the effects of media visibility on the perception of particular "marked" bodies. Scholarship across the disciplines of communication, anthropology, gender studies, and visual studies, as well as a photographer's visual essay and memorial reflection, throw light on various strategies of visualization and (de)legitimation and link these to broader socioeconomic concerns. Questions of the ethics of spectatorship, such as how to evoke empathy in the representation of individuals' suffering without perpetuating social and economic inequalities, are explored in individual, (trans-)national, and global contexts, demonstrating how disease (in)visibility intersects with a complex nexus of health, sexuality, and global/national politics. A sensible management of visibility--an "ecology of the visible"--can be productive of more viable ways of individual and collective engagement with those who suffer.
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