Communicative Biocapitalism The Voice of the Patient in Digital Health and the Health Humanities
The Precision Medicine Initiative, Apple’s HealthKit, the FitBit—the booming digital health industry asserts that digital networks, tools, and the scientific endeavors they support will usher in a new era of medicine centered around “the voice of the patient.” But whose “voices” do such tools actually solicit? And through what perspective will those voices be heard? Digital health tools are marketed as neutral devices made to help users take responsibility for their health. Yet digital technologies are not neutral; they are developed from an existing set of assumptions about their potential users and contexts for use, and they reflect dominant ideologies of health, dis/ability, gender, and race. Using patient-networking websites, the Quantified Self, and online breast cancer narratives, Communicative Biocapitalism examines the cultural, technological, economic, and rhetorical logics that shape the “voice of the patient” in digital health to identify how cultural understandings and social locations of race, gender, and disability shape whose voices are elicited and how they are interpreted.