Sustaining Surveillance: The Importance Of Information For Public Health

230 Pages·2021·2.306 MB·English

by  John G. Francis, Leslie P. Francis

Public Health Ethics Analysis 6
Series Editor: Michael J. Selgelid
John G. Francis
Leslie P. Francis
Sustaining
Surveillance:
The Importance
of Information
for Public Health
Public Health Ethics Analysis
Volume 6
Series Editor
Michael J. Selgelid,
Centre for Human Bioethics, Monash University, Melbourne, VIC, Australia
During the 21st Century, Public Health Ethics has become one of the fastest growing
subdisciplines of bioethics. This is the first Book Series dedicated to the topic of
Public Health Ethics. It aims to fill a gap in the existing literature by providing
thoroughgoing, book-length treatment of the most important topics in Public Health
Ethics—which have otherwise, for the most part, only been partially and/or
sporadically addressed in journal articles, book chapters, or sections of volumes
concerned with Public Health Ethics. Books in the series will include coverage of
central topics in Public Health Ethics from a plurality of disciplinary perspectives
including: philosophy (e.g., both ethics and philosophy of science), political science,
history, economics, sociology, anthropology, demographics, law, human rights,
epidemiology, and other public health sciences. Blending analytically rigorous and
empirically informed analyses, the series will address ethical issues associated with
the concepts, goals, and methods of public health; individual (e.g., ordinary citizens’
and public health workers’) decision making and behaviour; and public policy. Inter
alia, volumes in the series will be dedicated to topics including: health promotion;
disease prevention; paternalism and coercive measures; infectious disease; chronic
disease; obesity; smoking and tobacco control; genetics; the environment; public
communication/trust; social determinants of health; human rights; and justice. A
primary priority is to produce volumes on hitherto neglected topics such as ethical
issues associated with public health research and surveillance; vaccination;
tuberculosis; malaria; diarrheal disease; lower respiratory infections; drug resistance;
chronic disease in developing countries; emergencies/disasters (including
bioterrorism); and public health implications of climate change.
More information about this series at http://www.springer.com/series/10067
John G. Francis • Leslie P. Francis
Sustaining Surveillance: The
Importance of Information
for Public Health
John G. Francis Leslie P. Francis
University of Utah University of Utah
Salt Lake City, UT, USA Salt Lake City, UT, USA
ISSN 2211-6680 ISSN 2211-6699 (electronic)
Public Health Ethics Analysis
ISBN 978-3-030-63926-6 ISBN 978-3-030-63928-0 (eBook)
https://doi.org/10.1007/978-3-030-63928-0
© Springer Nature Switzerland AG 2021
This work is subject to copyright. All rights are reserved by the Publisher, whether the whole or part of
the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation,
broadcasting, reproduction on microfilms or in any other physical way, and transmission or information
storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology
now known or hereafter developed.
The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication
does not imply, even in the absence of a specific statement, that such names are exempt from the relevant
protective laws and regulations and therefore free for general use.
The publisher, the authors, and the editors are safe to assume that the advice and information in this book
are believed to be true and accurate at the date of publication. Neither the publisher nor the authors or the
editors give a warranty, expressed or implied, with respect to the material contained herein or for any
errors or omissions that may have been made. The publisher remains neutral with regard to jurisdictional
claims in published maps and institutional affiliations.
This Springer imprint is published by the registered company Springer Nature Switzerland AG
The registered company address is: Gewerbestrasse 11, 6330 Cham, Switzerland
For our grandson Jack, our granddaughter
Minnow, and our granddaughter Elka
may they live in a healthier and safer world
and
for each other
where it all began
Contents
1 Introduction: Why Surveillance Matters . . . . . . . . . . . . . . . . . . . . . . . 1
1.1 COVID-19 Stuns the World . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1
1.2 The Ubiquity of Surveillance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2
1.3 Public Health and Population Health . . . . . . . . . . . . . . . . . . . . . . . . 6
1.4 Surveillance for Health and Surveillance for Security . . . . . . . . . . . 7
1.5 Framing the Ethics of Public Health Surveillance . . . . . . . . . . . . . . 9
1.6 Core Ethical Considerations for Surveillance . . . . . . . . . . . . . . . . . 13
1.7 Plan of the Volume . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16
2 Counting Numbers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19
2.1 Background . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19
2.2 Plagues and Pandemics: From the Black Death to COVID-19 . . . . 21
2.2.1 The Plague . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 21
2.2.2 Ebola . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23
2.2.3 COVID-19 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24
2.3 Reactions to Contagion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24
2.3.1 Stigma and Isolation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24
2.3.2 Cultural Disruption . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 26
2.3.3 Moral Condemnation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 27
2.4 Limits of Science: Risk and Uncertainty . . . . . . . . . . . . . . . . . . . . . 28
2.4.1 Understanding Disease Etiology . . . . . . . . . . . . . . . . . . . . . 29
2.4.2 Understanding Population Trends
and Their Significance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 31
2.4.3 Flaws and Gaps in the Data . . . . . . . . . . . . . . . . . . . . . . . . . 32
2.4.4 False Positives and False Negatives . . . . . . . . . . . . . . . . . . . 33
2.4.5 Behavioral Economics, Cognitive Biases
and Judgments of Risk . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 36
vii
viii Contents
2.5 Suspicions of Science: Exploitation of Research Subjects
and Conflicts of Interest . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 38
2.5.1 Exploitation in Research . . . . . . . . . . . . . . . . . . . . . . . . . . . 38
2.5.2 Conflicts of Interest . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 40
2.6 Suspicions of Science: Skepticism and Politics . . . . . . . . . . . . . . . . 42
2.7 Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 45
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 45
3 Case Identification and Contact Tracing . . . . . . . . . . . . . . . . . . . . . . . 51
3.1 Background . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 51
3.2 Typhoid Mary and Case Identification . . . . . . . . . . . . . . . . . . . . . . . 52
3.3 Contact Tracing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 55
3.4 Progressivism, Moral Purity, and Sexually
Transmitted Infections . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 57
3.5 HIV/AIDS: Disease Control and Confidentiality . . . . . . . . . . . . . . 65
3.5.1 HIV Disease Control . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 66
3.5.2 Confidentiality and Reporting Test Results . . . . . . . . . . . . . 69
3.5.3 HIV Today . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 71
3.6 Ethical Tensions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 72
3.6.1 Individualistic Autonomy and Informed Consent . . . . . . . . 73
3.6.2 Access to Experimental Drugs for HIV . . . . . . . . . . . . . . . . 75
3.6.3 Research Ethics and HIV . . . . . . . . . . . . . . . . . . . . . . . . . . . 76
3.7 COVID-19 and Enhanced Contact Tracing . . . . . . . . . . . . . . . . . . . 77
3.8 Informing the Subjects of Reports . . . . . . . . . . . . . . . . . . . . . . . . . . 82
3.9 Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 83
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 84
4 Surveillance and Equity: Identifying Hazards
in the Environment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 91
4.1 Health Equity . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 91
4.2 Environmental Hazards and Public Health Surveillance . . . . . . . . . 93
4.2.1 Public Goods . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 94
4.2.2 Political Borders. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 95
4.2.3 Intrusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 97
4.3 Water Surveillance Disparities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 98
4.3.1 Clean Water, the UN, and the WHO . . . . . . . . . . . . . . . . . . 99
4.3.2 Flint, Michigan: A Surveillance Failure in a Wealthy
Country . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 100
4.4 Inequity in Safe Water Surveillance . . . . . . . . . . . . . . . . . . . . . . . . . 102
4.5 Background Injustice and Surveillance Inequities . . . . . . . . . . . . . . 105
4.6 Failures of Compliance: Water Surveillance or Health
Emergencies of International Concern? . . . . . . . . . . . . . . . . . . . . . . 107
4.7 Surveillance Under Feasibility Challenges . . . . . . . . . . . . . . . . . . . 110
4.8 Water Surveillance and Ideal Surveillance . . . . . . . . . . . . . . . . . . . 111
4.9 Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 114
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 114
Contents ix
5 Enhancing Surveillance: New Data, New Technologies, and New
Actors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 119
5.1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 119
5.2 “Big” Health Data and AI . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 121
5.3 The Debate About Re-identification . . . . . . . . . . . . . . . . . . . . . . . . 122
5.4 The Absence of Real-Time Notice or Consent . . . . . . . . . . . . . . . . 124
5.5 Interoperable Electronic Health Records (EHRs) . . . . . . . . . . . . . . 126
5.5.1 EHRs in the United States . . . . . . . . . . . . . . . . . . . . . . . . . . 127
5.5.2 EHRs in the UK . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 130
5.5.3 EHRs in the European Union: The General
Data Protection Regulation and Public Health . . . . . . . . . . 132
5.6 Bloodspots Retained from Newborn Screening . . . . . . . . . . . . . . . . 133
5.7 Biobanks . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 136
5.8 Registries . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 137
5.9 Information Gained in Medical Research . . . . . . . . . . . . . . . . . . . . 139
5.10 Direct to Consumer Testing, Including Genetic Testing . . . . . . . . . 140
5.11 Smartphones and Smartphone Apps . . . . . . . . . . . . . . . . . . . . . . . . 141
5.12 Robots, Wearables, and Biosensors . . . . . . . . . . . . . . . . . . . . . . . . . 143
5.13 Public Health Surveillance by Actors in the Private Sector . . . . . . . 144
5.13.1 WHO and Non-state Actors . . . . . . . . . . . . . . . . . . . . . . . . . 146
5.13.2 U.S. Non-profit Hospitals
and Community-Based Needs . . . . . . . . . . . . . . . . . . . . . . . 147
5.13.3 Internet Search Engines: Google . . . . . . . . . . . . . . . . . . . . . 148
5.13.4 Social Media: The Facebook Example . . . . . . . . . . . . . . . . 148
5.14 Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 151
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 152
6 Surveillance for the “New” Public Health . . . . . . . . . . . . . . . . . . . . . . 159
6.1 Public Health and Population Well-being . . . . . . . . . . . . . . . . . . . . 159
6.2 Surveillance for the New Public Health . . . . . . . . . . . . . . . . . . . . . . 161
6.3 Libertarianism and Challenges to Surveillance
for the New Public Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 163
6.4 U.S. Constitutional History, the New Public Health,
and the Powers of Government . . . . . . . . . . . . . . . . . . . . . . . . . . . . 166
6.5 Populations or Individuals? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 169
6.6 Paternalist and Non-paternalist Ethical Objections
to the New Public Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 170
6.7 Justifying Surveillance for the New Public Health without
Paternalism . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 173
6.7.1 Agreeing to Give and Receive Information . . . . . . . . . . . . . 173
6.7.2 Non-paternalistic Reasons for the New Public Health:
Education and Social Determinants of Health . . . . . . . . . . . 175
6.7.3 Non-paternalistic Arguments for the New Public
Health: Public “Bads.” . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 178
x Contents
6.8 Paternalist Arguments for the New Public Health . . . . . . . . . . . . . . 179
6.8.1 Justifying Paternalism . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 179
6.8.2 Justifications for “Softer” Paternalism . . . . . . . . . . . . . . . . . 180
6.8.3 Combining Soft Paternalism with Fairness to Others . . . . . 182
6.8.4 Justifying Hard Paternalism? . . . . . . . . . . . . . . . . . . . . . . . . 182
6.9 Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 184
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 184
7 Public Health, Communities and Consent . . . . . . . . . . . . . . . . . . . . . . 189
7.1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 189
7.2 Public Health, Communities, and Populations . . . . . . . . . . . . . . . . 191
7.2.1 Public Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 191
7.2.2 Communities of Geography and Communities
of Interest . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 192
7.2.3 Populations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 195
7.3 The Changing Landscape of Groups: Cooperation and
Volunteerism . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 196
7.4 Consent: Public Health and Individuals . . . . . . . . . . . . . . . . . . . . . . 199
7.5 Individual Informed Consent: Models from Bioethics . . . . . . . . . . 200
7.6 Public Health Authorities: Democratic Practice, Political
Participation, and the “Consent of the Governed” . . . . . . . . . . . . . . 205
7.7 Involving Groups and Communities . . . . . . . . . . . . . . . . . . . . . . . . 208
7.7.1 Groups . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 208
7.7.2 Geographically Defined Communities . . . . . . . . . . . . . . . . . 209
7.7.3 Communities of Interest, Communities of Identity,
and Populations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 212
7.8 Movement: Surveillance Crossing International Boundaries . . . . . 214
7.9 Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 219
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 219
8 Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 223