Sustaining Surveillance: The Importance Of Information For Public Health

Contents
Chapter 1: Introduction: Why Surveillance Matters
	1.1 COVID-19 Stuns the World
	1.2 The Ubiquity of Surveillance
	1.3 Public Health and Population Health
	1.4 Surveillance for Health and Surveillance for Security
	1.5 Framing the Ethics of Public Health Surveillance
	1.6 Core Ethical Considerations for Surveillance
	1.7 Plan of the Volume
	References
Chapter 2: Counting Numbers
	2.1 Background
	2.2 Plagues and Pandemics: From the Black Death to COVID-19
		2.2.1 The Plague
		2.2.2 Ebola
		2.2.3 COVID-19
	2.3 Reactions to Contagion
		2.3.1 Stigma and Isolation
		2.3.2 Cultural Disruption
		2.3.3 Moral Condemnation
	2.4 Limits of Science: Risk and Uncertainty
		2.4.1 Understanding Disease Etiology
		2.4.2 Understanding Population Trends and Their Significance
		2.4.3 Flaws and Gaps in the Data
		2.4.4 False Positives and False Negatives
		2.4.5 Behavioral Economics, Cognitive Biases and Judgments of Risk
	2.5 Suspicions of Science: Exploitation of Research Subjects and Conflicts of Interest
		2.5.1 Exploitation in Research
		2.5.2 Conflicts of Interest
	2.6 Suspicions of Science: Skepticism and Politics
	2.7 Summary
	References
Chapter 3: Case Identification and Contact Tracing
	3.1 Background
	3.2 Typhoid Mary and Case Identification
	3.3 Contact Tracing
	3.4 Progressivism, Moral Purity, and Sexually Transmitted Infections
	3.5 HIV/AIDS: Disease Control and Confidentiality
		3.5.1 HIV Disease Control
		3.5.2 Confidentiality and Reporting Test Results
		3.5.3 HIV Today
	3.6 Ethical Tensions
		3.6.1 Individualistic Autonomy and Informed Consent
		3.6.2 Access to Experimental Drugs for HIV
		3.6.3 Research Ethics and HIV
	3.7 COVID-19 and Enhanced Contact Tracing
	3.8 Informing the Subjects of Reports
	3.9 Summary
	References
Chapter 4: Surveillance and Equity: Identifying Hazards in the Environment
	4.1 Health Equity
	4.2 Environmental Hazards and Public Health Surveillance
		4.2.1 Public Goods
		4.2.2 Political Borders
		4.2.3 Intrusion
	4.3 Water Surveillance Disparities
		4.3.1 Clean Water, the UN, and the WHO
		4.3.2 Flint, Michigan: A Surveillance Failure in a Wealthy Country
	4.4 Inequity in Safe Water Surveillance
	4.5 Background Injustice and Surveillance Inequities
	4.6 Failures of Compliance: Water Surveillance or Health Emergencies of International Concern?
	4.7 Surveillance Under Feasibility Challenges
	4.8 Water Surveillance and Ideal Surveillance
	4.9 Summary
	References
Chapter 5: Enhancing Surveillance: New Data, New Technologies, and New Actors
	5.1 Introduction
	5.2 “Big” Health Data and AI
	5.3 The Debate About Re-identification
	5.4 The Absence of Real-Time Notice or Consent
	5.5 Interoperable Electronic Health Records (EHRs)
		5.5.1 EHRs in the United States
		5.5.2 EHRs in the UK
		5.5.3 EHRs in the European Union: The General Data Protection Regulation and Public Health
	5.6 Bloodspots Retained from Newborn Screening
	5.7 Biobanks
	5.8 Registries
	5.9 Information Gained in Medical Research
	5.10 Direct to Consumer Testing, Including Genetic Testing
	5.11 Smartphones and Smartphone Apps
	5.12 Robots, Wearables, and Biosensors
	5.13 Public Health Surveillance by Actors in the Private Sector
		5.13.1 WHO and Non-state Actors
		5.13.2 U.S. Non-profit Hospitals and Community-Based Needs
		5.13.3 Internet Search Engines: Google
		5.13.4 Social Media: The Facebook Example
	5.14 Summary
	References
Chapter 6: Surveillance for the “New” Public Health
	6.1 Public Health and Population Well-being
	6.2 Surveillance for the New Public Health
	6.3 Libertarianism and Challenges to Surveillance for the New Public Health
	6.4 U.S. Constitutional History, the New Public Health, and the Powers of Government
	6.5 Populations or Individuals?
	6.6 Paternalist and Non-paternalist Ethical Objections to the New Public Health
	6.7 Justifying Surveillance for the New Public Health without Paternalism
		6.7.1 Agreeing to Give and Receive Information
		6.7.2 Non-paternalistic Reasons for the New Public Health: Education and Social Determinants of Health
		6.7.3 Non-paternalistic Arguments for the New Public Health: Public “Bads.”
	6.8 Paternalist Arguments for the New Public Health
		6.8.1 Justifying Paternalism
		6.8.2 Justifications for “Softer” Paternalism
		6.8.3 Combining Soft Paternalism with Fairness to Others
		6.8.4 Justifying Hard Paternalism?
	6.9 Summary
	References
Chapter 7: Public Health, Communities and Consent
	7.1 Introduction
	7.2 Public Health, Communities, and Populations
		7.2.1 Public Health
		7.2.2 Communities of Geography and Communities of Interest
		7.2.3 Populations
	7.3 The Changing Landscape of Groups: Cooperation and Volunteerism
	7.4 Consent: Public Health and Individuals
	7.5 Individual Informed Consent: Models from Bioethics
	7.6 Public Health Authorities: Democratic Practice, Political Participation, and the “Consent of the Governed”
	7.7 Involving Groups and Communities
		7.7.1 Groups
		7.7.2 Geographically Defined Communities
		7.7.3 Communities of Interest, Communities of Identity, and Populations
	7.8 Movement: Surveillance Crossing International Boundaries
	7.9 Summary
	References
Chapter 8: Conclusion