User Privacy Concerns and Expectations of Post-Pandemic Health Surveillance: A Scenario-Based Interview Study (Preprint)

BACKGROUND Smartphone-based apps designed and deployed to mitigate the ongoing COVID-19 pandemic are poised to become an infrastructure for post-pandemic public health surveillance. Yet people frequently identify deep-seated privacy concerns about such apps, invoking rationalizations such as contributing to ‘the greater good’ to justify their privacy-related discomfort. We adopt a future-oriented lens and consider participant perceptions of the potential routinization of such apps as a general public health surveillance infrastructure. This work focuses on the need to temper the surveillant achievement of public health with consideration for potential colonization of public health by the exploitative mechanisms of surveillance capitalism. OBJECTIVE This study develops an understanding of people’s perceptions of the potential routinization of apps as an infrastructure for public health surveillance after the COVID-19 pandemic has ended. METHODS We conducted scenario-based interviews (n = 19) with adults in the United States in order to understand how people perceive the short- and long-term privacy concerns associated with a fictional smart-thermometer app deployed to mitigate the ‘outbreak of a contagious disease.’ The scenario indicated that the app would continue functioning ‘after the disease outbreak as dissipated.’ We analyzed participant interviews using reflexive thematic analysis (TA). RESULTS Participants contextualized their perceptions of the app in a core trade-off between public health and personal privacy. They further evidenced the widespread expectation that data collected through health-surveillant apps would be shared with unknown third parties for financial gain. This expectation suggests a perceived alignment between health surveillant technologies and the broader economics of surveillance capitalism. Because of such expectations, participants routinely rationalized the use of the fictional app, which they viewed as always already privacy-invasive, by invoking ‘the greater good.’ We uncover that ‘the greater good’ is multi-faceted and self-contradictory, evidencing participants’ worry that health surveillance apps will contribute to an expansion of exploitative forms of surveillance. CONCLUSIONS While apps may be an effective means of pandemic-mitigation and preparedness, such apps are not exclusively beneficial in their outcomes. The potential routinization of apps as an infrastructure of general public health surveillance fosters end-user exploitation. Through its alignment with surveillance capitalism, such exploitation potentially erodes patient trust in the health care systems and providers that care for them. The inroads to such exploitation are present in participants’ manifestation of digital resignation, hyperbolic scaling, expectation of an infrastructure that works ‘too well,’ and generalized privacy fatalism.