In/visible Bodies: On patients and privacy in a networked world

Abstract

In the networked world, privacy and visibility become entangled in new and unexpected ways. This article uses the concept of networked visibility to explore the entanglement of technology and the visibility of patient bodies. Based on semi-structured interviews with patients active in social media, this paper describes how multiple patient bodies are produced in the negotiations between the need for privacy and the need for social interaction. Information technology is actively involved in these negotiations: patients use technology to make their bodies both visible and invisible. At the same time technology collects data on these patients, which can be used for undesired commercial and surveillance purposes. The notion of visibility by design may infuse design efforts that enable online privacy, supporting patients in the multiple ways they want to be visible and invisible online.