Sustaining Surveillance: The Importance of Information for Public Health (Public Health Ethics Analysis Book 6)

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. Contents 7 Chapter 1: Introduction: Why Surveillance Matters 11 1.1 COVID-19 Stuns the World 11 1.2 The Ubiquity of Surveillance 12 1.3 Public Health and Population Health 16 1.4 Surveillance for Health and Surveillance for Security 17 1.5 Framing the Ethics of Public Health Surveillance 19 1.6 Core Ethical Considerations for Surveillance 23 1.7 Plan of the Volume 24 References 26 Chapter 2: Counting Numbers 29 2.1 Background 29 2.2 Plagues and Pandemics: From the Black Death to COVID-19 31 2.2.1 The Plague 31 2.2.2 Ebola 33 2.2.3 COVID-19 34 2.3 Reactions to Contagion 34 2.3.1 Stigma and Isolation 34 2.3.2 Cultural Disruption 36 2.3.3 Moral Condemnation 37 2.4 Limits of Science: Risk and Uncertainty 38 2.4.1 Understanding Disease Etiology 39 2.4.2 Understanding Population Trends and Their Significance 41 2.4.3 Flaws and Gaps in the Data 42 2.4.4 False Positives and False Negatives 43 2.4.5 Behavioral Economics, Cognitive Biases and Judgments of Risk 46 2.5 Suspicions of Science: Exploitation of Research Subjects and Conflicts of Interest 48 2.5.1 Exploitation in Research 48 2.5.2 Conflicts of Interest 50 2.6 Suspicions of Science: Skepticism and Politics 52 2.7 Summary 55 References 55 Chapter 3: Case Identification and Contact Tracing 60 3.1 Background 60 3.2 Typhoid Mary and Case Identification 61 3.3 Contact Tracing 64 3.4 Progressivism, Moral Purity, and Sexually Transmitted Infections 66 3.5 HIV/AIDS: Disease Control and Confidentiality 74 3.5.1 HIV Disease Control 75 3.5.2 Confidentiality and Reporting Test Results 78 3.5.3 HIV Today 80 3.6 Ethical Tensions 81 3.6.1 Individualistic Autonomy and Informed Consent 82 3.6.2 Access to Experimental Drugs for HIV 84 3.6.3 Research Ethics and HIV 85 3.7 COVID-19 and Enhanced Contact Tracing 86 3.8 Informing the Subjects of Reports 91 3.9 Summary 92 References 93 Chapter 4: Surveillance and Equity: Identifying Hazards in the Environment 99 4.1 Health Equity 99 4.2 Environmental Hazards and Public Health Surveillance 101 4.2.1 Public Goods 102 4.2.2 Political Borders 103 4.2.3 Intrusion 105 4.3 Water Surveillance Disparities 106 4.3.1 Clean Water, the UN, and the WHO 107 4.3.2 Flint, Michigan: A Surveillance Failure in a Wealthy Country 108 4.4 Inequity in Safe Water Surveillance 110 4.5 Background Injustice and Surveillance Inequities 113 4.6 Failures of Compliance: Water Surveillance or Health Emergencies of International Concern? 115 4.7 Surveillance Under Feasibility Challenges 118 4.8 Water Surveillance and Ideal Surveillance 119 4.9 Summary 122 References 122 Chapter 5: Enhancing Surveillance: New Data, New Technologies, and New Actors 126 5.1 Introduction 126 5.2 “Big” Health Data and AI 128 5.3 The Debate About Re-identification 129 5.4 The Absence of Real-Time Notice or Consent 131 5.5 Interoperable Electronic Health Records (EHRs) 133 5.5.1 EHRs in the United States 134 5.5.2 EHRs in the UK 137 5.5.3 EHRs in the European Union: The General Data Protection Regulation and Public Health 139 5.6 Bloodspots Retained from Newborn Screening 140 5.7 Biobanks 143 5.8 Registries 144 5.9 Information Gained in Medical Research 146 5.10 Direct to Consumer Testing, Including Genetic Testing 147 5.11 Smartphones and Smartphone Apps 148 5.12 Robots, Wearables, and Biosensors 150 5.13 Public Health Surveillance by Actors in the Private Sector 151 5.13.1 WHO and Non-state Actors 153 5.13.2 U.S. Non-profit Hospitals and Community-Based Needs 154 5.13.3 Internet Search Engines: Google 155 5.13.4 Social Media: The Facebook Example 155 5.14 Summary 158 References 159 Chapter 6: Surveillance for the “New” Public Health 166 6.1 Public Health and Population Well-being 166 6.2 Surveillance for the New Public Health 168 6.3 Libertarianism and Challenges to Surveillance for the New Public Health 170 6.4 U.S. Constitutional History, the New Public Health, and the Powers of Government 173 6.5 Populations or Individuals? 176 6.6 Paternalist and Non-paternalist Ethical Objections to the New Public Health 177 6.7 Justifying Surveillance for the New Public Health without Paternalism 180 6.7.1 Agreeing to Give and Receive Information 180 6.7.2 Non-paternalistic Reasons for the New Public Health: Education and Social Determinants of Health 182 6.7.3 Non-paternalistic Arguments for the New Public Health: Public “Bads.” 185 6.8 Paternalist Arguments for the New Public Health 186 6.8.1 Justifying Paternalism 186 6.8.2 Justifications for “Softer” Paternalism 187 6.8.3 Combining Soft Paternalism with Fairness to Others 189 6.8.4 Justifying Hard Paternalism? 189 6.9 Summary 191 References 191 Chapter 7: Public Health, Communities and Consent 195 7.1 Introduction 195 7.2 Public Health, Communities, and Populations 197 7.2.1 Public Health 197 7.2.2 Communities of Geography and Communities of Interest 198 7.2.3 Populations 201 7.3 The Changing Landscape of Groups: Cooperation and Volunteerism 202 7.4 Consent: Public Health and Individuals 205 7.5 Individual Informed Consent: Models from Bioethics 206 7.6 Public Health Authorities: Democratic Practice, Political Participation, and the “Consent of the Governed” 211 7.7 Involving Groups and Communities 214 7.7.1 Groups 214 7.7.2 Geographically Defined Communities 215 7.7.3 Communities of Interest, Communities of Identity, and Populations 218 7.8 Movement: Surveillance Crossing International Boundaries 220 7.9 Summary 225 References 225 Chapter 8: Conclusion 229