Participation, Empowerment, and Evidence in the Current Discourse on Personalized Medicine: A Critique of "Democratizing Healthcare". (September 2022)

• Record Type: Journal Article
• Authors: Roth, Phillip H.; Bruni, Tommaso
• Is Part Of: Science, technology, & human values. Volume 47:Number 5(2022)
• Page Start: 1033
• Page End: 1056
• Publication Date: 2022-09
• Subjects: personalized medicine -- participation -- empowerment -- evidence -- democracy -- buzzwords; Science -- Social aspects -- Periodicals; Technology -- Social aspects -- Periodicals; Humanities -- Periodicals; 303.48305
• DOI: 10.1177/01622439211023568
• Languages: English
• ISSNs: 0162-2439

Abstract

"Democratization" has recently become a popular trope in Western public discourses on medicine, where it refers to patient participation in the gathering and distribution of health-related data using various digital technologies, in order to improve healthcare technically and socially. We critically analyze the usage of the term from the perspective of the "politics of buzzwords." Our claim is that the phrase works primarily to publicly justify the dramatic increase in the application of information and data technologies in healthcare and therefore fosters the corresponding industry. As a buzzword, "democratizing healthcare" is characterized by vagueness, which is why it receives meaning only through a word collective—a group of words that provide it with a context and are often used together with it. We examine key terms associated with "democratization" in the healthcare discourse—participation, empowerment, and personalized medicine—and show that the buzzword receives rhetorical power through the ambiguous reference to these concepts (those that are part of the word collective). As a consequence, the idea of "democracy" becomes diluted into meaning merely "access to, " and "healthcare" is reduced to the notion of a preventive, nonacute, monitored form of medical care.