Pandemic surveillance: ethics at the intersection of information, research, and health

Abstract

Pandemic surveillance raises established ethical questions in a new and urgent context at the juncture of information ethics, research ethics, and public health. This chapter explores how such surveillance implicates the values of privacy, fairness, transparency, and accountability (common themes in information ethics) as well as the values of autonomy, beneficence and non-maleficence, and justice (central themes in research ethics). In particular, three insights from these fields can help guide the use of surveillance technology: privacy is instrumental, not absolute; privacy has both individual and social significance; and third-party, democratic decision-making and oversight is critical in the process of balancing competing values and addressing ethical issues raised by pandemic surveillance. These insights are necessary for balancing the tensions between the social goods of privacy and public health while handling networked and highly sensitive health information.