Abstract
The allure of a “data-driven” future healthcare system continues to seduce many. Increasingly, work in Science & Technology Studies and related fields started to interrogate the saliency of this promissory rhetoric by raising ethical questions concerning epistemology, bias, surveillance, security, and opacity. Less visible is how ethical arguments are used as part of discursive work by various practitioners engaged in data-driven initiatives in healthcare. This article argues for more explicit attention to such discursive work in shaping the promissory future of data-driven healthcare technologies. Bringing together the hitherto separated themes of promissory futures and an emic approach to ethics as discursive work, we study how actors engaged various data-driven healthcare initiatives discursively conduct such ethics work, implicitly or explicitly assigning tasks and roles for stakeholders. We conceptualize this with the notion of “ethical framing” and identify three widely recurring types: ethics as “balancing act,” the technical “fix,” and ethics as “collective thought process.” We outline the characteristics of these acts of framing and discuss their implications for the envisaged roles and responsibilities of various actors. In the Discussion section, we outline the added value of bringing the distinct bodies of literature on promissory futures and ethical framing together and outline themes for new research.
Highlights
The allure of a “data-driven” future healthcare system continues to seduce many
The article addresses three empirical questions: (1) which ethical frames are enacted by key actors in data-driven healthcare technologies? (2) what consequences follow from these ethical frames in terms of the roles and responsibilities these actors envisage for themselves and others? and (3). How do these ethical frames shape the promissory future of data-driven healthcare technologies? The article is based on 145 interviews and document analysis conducted within an international research project, in which we compared the regulatory and governance dimensions of health-related “big data”1 in eight European countries
By bringing together STS literature on promissory futures, ethics literature on data-driven technologies, and policy literature on framing as discursive work, we identified three widely recurring types of ethical framing: ethics as a balancing act, the technical fix, and ethics as collective thought process
Summary
The allure of a “data-driven” future healthcare system continues to seduce many. Driven by technological developments (Mayer-Schonberger and Cukier 2013) and increasing opportunities for algorithmic analysis of large and varied data sets (Raghupathi and Raghupathi 2014), the latest years are marked by a continuous stream of hypes and “buzzwords” about the potential of data-driven healthcare technologies. The underlying promise is remarkably similar: healthcare is expected to improve significantly because more data are collected from varied sources and better analytical techniques are available to meaningfully process these data. Vincent 2014; Penkler, Felder, and Felt 2019). Such promissory rhetoric is highly recognizable in the perceived future of data-driven healthcare technologies (Hoeyer 2019; Stevens, Wehrens, and de Bont 2018)
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