Designing privacy in personalized health: An empirical analysis

Abstract

A crucial challenge for personalized health is the handling of individuals’ data and specifically the protection of their privacy. Secure storage of personal health data is of paramount importance to convince citizens to collect personal health data. In this survey experiment, we test individuals’ willingness to produce and store personal health data, based on different storage options and whether this data is presented as common good or private good. In this paper, we focus on the nonmedical context with two means to self-produce data: connected devices that record physical activity and genetic tests that appraise risks of diseases. We use data from a survey experiment fielded in Switzerland in March 2020 and perform regression analyses on a representative sample of Swiss citizens in the French- and German-speaking cantons. Our analysis shows that respondents are more likely to use both apps and tests when their data is framed as a private good to be stored by individuals themselves. Our results demonstrate that concerns regarding the privacy of personal heath data storage trumps any other variable when it comes to the willingness to use personalized health technologies. Individuals prefer a data storage format where they retain control over the data. Ultimately, this study presents results susceptible to inform decision-makers in designing privacy in personalized health initiatives.