The Ethics of Personal Data in Digital Health


One of the fastest growing areas within health and medicine is the field of digital health. Digital health relies on a variety of different types of information and communication technologies (ICTs) to collect, analyze, and deliver personalized care to individuals but can be scaled up and deployed for mass implementation (Rivas, 2018). At the core of all digital health technologies is a focus on individuals and a promise for personalized medicine. This means things like the use of genomic data as a basis for personalized medicine and drug discovery (Szlezák, Evers, Wang, & Pérez, 2014), artificial intelligence as a diagnostic tool (Fogel & Kvedar, 2018), and mobile apps and ICTs as decision support and disease management tools (Sharma et al., 2018). On a societal level, this means more opportunities for research, cheaper healthcare costs, improved public health and safety, and delivery of high levels of care to more patients than ever before (Meskó et al., 2017; Rivas & Wac, 2018; van der Heijden & Witkamp, 2018; Vayena, Haeusermann, Adjekum, & Blasimme, 2018). However, while the potential exists for big data and digital technologies to radically improve medicine and the delivery of healthcare, in general, results have been mixed about whether digital technology has actually brought about significant changes for either health outcomes or cost savings (Miller and Tucker, 2017; Finkelstein et al., 2016; McCabe, McCann, & Brady, 2017).

An important issue that is often relegated to the background is the ethics of personal health data. The ability to continuously collect highly personal information about users in real time brings about new challenges to thinking about how data is used and the people being monitored. Data in itself is not powerful but gains significance though the human communication process when it is used to influence the opinions we form, the decisions we make, and the actions we engage in. How ethics is defined and applied to digital health and personal data is important because it provides the foundation for how we view, treat, respect, and communicate with ourselves and others. In this paper, I argue that one reason why patients, healthcare providers, and society have yet to see significant value from digitized health technologies is because the current healthcare system prioritizes collecting personal data over patient outcomes, leading to problems of interoperability and business models that devalue the patient user.

The purpose of this paper is to explore the ethics of digitized health communication by highlighting the growing importance and abuse of digitized health data within the current healthcare system. To do this, I first distinguish between the related but distinct fields of digital health and its sub-field, digital medicine. Next, I delineate the role of digitized health technologies and personal data in the current healthcare system, followed by an overview of the underlying mechanisms that contribute to the lack of progress of digital technology in health. I close by critiquing digitized health’s current unethical approach to personal data and offer suggestions for building a more optimal ethical system.