This book presents a comprehensive theory of the ethics and political philosophy of public health surveillance based on reciprocal obligations among surveillers, those under surveillance, and others potentially affected by surveillance practices. Public health surveillance aims to identify emerging health trends, population health trends, treatment efficacy, and methods of health promotion--all apparently laudatory goals. Nonetheless, as with anti-terrorism surveillance, public health surveillance raises complex questions about privacy, political liberty, and justice both of and in data use. Individuals and groups can be chilled in their personal lives, stigmatized or threatened, and used for the benefit of others when health information is wrongfully collected or used. Transparency and openness about data use, public involvement in decisions, and just distribution of the benefits of surveillance are core elements in the justification of surveillance practices. Understanding health surveillance practices, the concerns it raises, and how to respond to them is critical not only to ethical and trustworthy but also to publicly acceptable and ultimately sustainable surveillance practices. The book is of interest to scholars and practitioners of the ethics and politics of public health, bioethics, privacy and data technology, and health policy. These issues are ever more pressing in pandemic times, where misinformation can travel quickly and suspicions about disease spread, treatment efficacy, and vaccine safety can have devastating public health effects.
Leslie P. Francis is Distinguished Alfred C. Emery Professor of Law, Distinguished Professor of Philosophy, and Director of the Center for Law and Biomedical Sciences at the University of Utah. Her most recent books include Privacy: What Everyone Needs to Know (with John G. Francis) (Oxford, 2017), and the edited Oxford Handbook of Reproductive Ethics (Oxford University Press 2017). The Patient as Victim and Vector: Ethics and Infectious Disease, coauthored by Margaret P. Battin, Leslie P. Francis, Jay A. Jacobson, and Charles B. Smith is being reissued by Oxford in 2021. Professor Francis has served as President of the Pacific Division of the American Philosophical Association and writes widely on the ethics and law of disability discrimination, privacy and access to health information, and other issues in health law.
John G. Francis is Research Professor of Political Science at the University of Utah. His research fields include comparative public health policy, privacy, and the politics of representation. He has formerly served as Senior Associate Vice President for Academic Affairs and Chair of the Political Science department at Utah. Science Department, In recent years he has been a Visiting Professor of International relations at San Francisco State University, Beaufort Visiting Fellow at Lady Margaret Hall, Oxford. Recent books include Privacy: What Everyone Needs to Know (with Leslie Francis) (Oxford 2017), and the co-edited David Cameron and Conservative Renewal: The Limits of Modernisation (with Gillian Peele) (Manchester UK University Press, 2016). With Leslie Francis, he is currently at work on States of Health: Bioethics and Federalism, under contract with Oxford University Press.
CHAPTER ONE: Surveillance Today and Tomorrow.- CHAPTER TWO: Autonomy, Consent, and Privacy.- CHAPTER THREE: Risk, Precautionary Principles, and Paternalism.- CHAPTER FOUR: New Data, New Purposes, New Actors, and Justice in Data Use.- CHAPTER FIVE: Transparency, Oversight, and Accountability for Data Use.- CHAPTER SIX: Reciprocal Obligations in Data Use.