There is a fundamental need to establish the most ethical and effective way of tracking disease in the postpandemic era. The ubiquity of mobile phones is generating large amounts of passive data (collected without active user participation) that can be used as a tool for tracking disease. Although discussions of pragmatism or economic issues tend to guide public health decisions, ethical issues are the foremost public concern. Thus, officials must look to history and current moral frameworks to avoid past mistakes and ethical pitfalls. Past pandemics demonstrate that the aftermath is the most effective time to make health policy decisions. However, an ethical discussion of passive data use for digital public health surveillance has yet to be attempted, and little has been done to determine the best method to do so. Therefore, we aim to highlight four potential areas of ethical opportunity and challenge: (1) informed consent, (2) privacy, (3) equity, and (4) ownership.
Keywords: data equity; data ownership; data privacy; digital health; digital phenotyping; digital public health surveillance; informed consent; mHealth; mobile phone; pandemic response; passive data; public health surveillance; smartphone.
©John L Kilgallon, Ishaan Ashwini Tewarie, Marike L D Broekman, Aakanksha Rana, Timothy R Smith. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 15.02.2022.