Digital Epidemiology during Public Health Emergencies: An Ethical Approach

Summary

This thesis has the purpose to research the benefits, ethical challenges and potential harms and presented by utilizing data -generated outside of the health system- on epidemiology and health surveillance during health emergencies and propose a framework for maximizing public benefit of such applications while sustaining individual data sovereignty during pandemics. Pandemics, like 2019 (COVID-19), pose an extraordinary threat to global public health, socioeconomic stability, food security and other social goods. Left uncontrolled, a pandemic would probably claim millions of lives and place extreme strain on health care systems worldwide. While digital public health surveillance can help to reduce the spread of pandemics, applications come at individual data sovereignty costs. The emergence of research using big data for digital epidemiology and public health surveillance is directly related to the vast, diverse data generated by individuals online. Recently, a range of innovative uses of personal data from outside the health sector have been undertaken to meet the challenges posed by COVID-19. The question is not whether to use measures—such as lockdowns, quarantines, border control or other tools such as digital epidemiology—but how to balance between the Stay Healthy – Stay Human Polarity. In this thesis, we examine aspects of this polarity and in particular a more strictly defined polarity: Utilization of digital health tools – Sustaining Individual Data Sovereignty.