Annals of Epidemiology 91 (2024) 8–11

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Annals of Epidemiology
journal homepage: www.sciencedirect.com/journal/annals-of-epidemiology

Global matters of epidemiology and the ethical challenges of addressing the

health of populations
Jennifer Salerno a, b, *, Douglas L. Weed c, d, Chandra M. Pandey e, f, Victoria Crabb g, Edward
S. Peters h, WayWay M. Hlaing i
a
Department of Family Medicine, Faculty of Health Sciences, McMaster University, Hamilton, Ontario, Canada
b
Department of Health Research Methods, Evidence, and Impact, Faculty of Health Sciences, McMaster University, Hamilton, Ontario, Canada
c
University of Utah School of Medicine, Family and Preventive Medicine, Salt Lake City, UT, United States
d
DLW Consulting Services, Salt Lake City, UT, United States
e
Department of Biostatistics and Health Informatics, Sanjay Gandhi Postgraduate Institute of Medical Sciences, Lucknow, India
f
Divine Heart Hospital and Multispeciality, Lucknow, India
g
Department of Epidemiology, University of Iowa College of Public Health, Iowa City, IA, United States
h
College of Public Health, Department of Epidemiology, University of Nebraska Medical Center, Omaha, NE, United States
i
Division of Epidemiology and Population Sciences, Department of Public Health Sciences, University of Miami, Miami, FL, United States

A R T I C L E I N F O A B S T R A C T

Keywords: Purpose: The American College of Epidemiology (ACE) held its 2022 Annual Meeting, September 8–11, with a
Causal inference conference theme of ‘Pandemic of Misinformation: Building Trust in Epidemiology’. The ACE Ethics Committee
Digital epidemiology hosted a symposium session in recognition of the global spotlight placed on epidemiology and public health due
Global health
to the COVID-19 crisis. The ACE Ethics Committee invited previous Chairs of the Ethics Committee and current
Ethics
Public health
President of the International Epidemiological Association to present at the symposium session. This paper aims
Public trust to highlight the ethical challenges presented during the symposium session.
Methods: Three speakers with diverse backgrounds representing expertize from the fields of ethics, epidemiology,
public health, clinical trials, pharmacoepidemiology, statistics, law, and public policy, covering perspectives
from the U.S., Europe, and Southeast Asia were selected to present on the ethical challenges in epidemiology and
public health applying a global theme. Dr. D. Weed presented on ‘Causation, Epidemiology and Ethics’; Dr. C.M.
Pandey presented on the ‘Ethical Challenges in the Practice of Digital Epidemiology’; and Dr. J. Acquavella
presented on ‘Departures from Scientific Objectivity: A Cause of Eroding Trust in Epidemiology.’
Results: The collective goal to improve the public’s health was a mutually shared theme across the three distinct
areas. We highlight the common ethical guidance and principle-based approaches that have served epidemiology
and public health in framing and critical analysis of novel challenges, including autonomy, beneficence, justice,
scientific integrity, duties to the profession and community, and developing and maintaining public trust;
however, gaps remain in how best to address health inequalities and the novel emergence and pervasiveness of
misinformation and disinformation that have impacted the health of the global community. We introduce an
ethical framework of translational bioethics that places considerations of the social determinants of health at the
forefront.
Conclusions: The COVID-19 pandemic required an expedited public health response and, at the same time, placed
the profession of epidemiology and public health, its system, and structures, under the microscope like never
before. This article illustrates that revisiting our foundations in research and practice and orienting contempo­
rary challenges using an ethical lens can assist in identifying and furthering the health of populations globally.

* Correspondence to: Department of Family Medicine, Faculty of Health Sciences, McMaster University, David Braley Health Sciences Centre, 100 Main Street
West, 5th Floor, Hamilton, Ontario L8P 1H6, Canada.
E-mail address: salernoj@mcmaster.ca (J. Salerno).

https://doi.org/10.1016/j.annepidem.2024.01.003
Received 18 December 2023; Accepted 10 January 2024
Available online 17 January 2024
1047-2797/© 2024 The Author(s). Published by Elsevier Inc. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-
nc-nd/4.0/).
J. Salerno et al.
Introduction
The global spread of the COVID-19 virus connected the health of
human populations in unprecedented ways. First, by requiring physical
distancing from one another to circumvent infection regardless of where
you lived, and second, by witnessing together the worldwide disease
impact and distribution in real-time. However, the pandemic also
revealed important differences. Differential health outcomes were
shown related to poverty, homelessness, chronic conditions (e.g.,
asthma), race, ethnicity, geographic location, and occupation [1].
Global control efforts and varied health-decision making were influ­
enced by local adaptations needed to serve the community context [2].
We observed in communities the role of digital and social media during
COVID-19, which globally increased our awareness of their potential
communication benefits however, their implementation also raised
concerns about the pervasive ethical, legal, privacy, and security issues
[3]. The term, ‘infodemic’, was coined during the pandemic in response
to the harmful effects of rapidly spreading misinformation, fake news,
and conspiracy theories via news outlets, social media, and the internet
during scientific and political uncertainty [4]. Correspondingly, wide­
spread vaccine hesitancy was fueled by the proliferation of misinfor­
mation and conflicting messaging, eroding public confidence and trust
in leadership [5].
We recognize that the COVID-19 pandemic brought several long­
standing ethical considerations to the forefront, including the scope of
public trust, duties and obligations of the epidemiology and public
health professions and the community regarding scientific inference,
maximizing benefits and minimizing harms, autonomy, accountability,
and health equity. To shed light on these contemporary ethical consid­
erations for epidemiology and public health using examples related and
unrelated to COVID-19, the American College of Epidemiology (ACE)
Ethics Committee hosted a hybrid symposium at the 2022 ACE Annual
Meeting on September 11th, 2022. Invited speakers with diverse
expertize presented three topic areas: causation, epidemiology, and
ethics (D.W.); the ethical practice of digital epidemiology (C.P.); and
scientific objectivity, conflict of interest, and trust in public health/
epidemiology (J.A.).
In this paper, we summarize some of the main points made by the
speakers and discuss the ethical challenges posed by these topics.
Causation, epidemiology and ethics
Causality, the relating of cause and effect, is an essential concept in
the practice of epidemiology [6]. Regarding causal claims, the ’ethic­
s-and-epidemiology’ dyad is often overlooked. Yet, it plays a significant
role in etiologic investigations of chronic diseases, understanding in­
fectious disease outbreaks, and implementing public health measures.
Several approaches to ethical discourse exist (e.g., theory, ethical
guidelines, case studies), and here we critically discuss the practice of
causal inference in relation to well-established and commonly held
ethical principles (e.g., Belmont, Tri-Council, Helsinki documents).
First, consider the role of virtue ethics in causal inference in epidemi­
ology [7]. The American College of Epidemiology (ACE) Ethics Guide­
lines state that “professional virtues are those traits of character that dispose
us to act in ways that contribute to achieving the good that is internal to the
practice of epidemiology” and include “fidelity, veracity, and honesty”
[8]. When applied in the context of research conduct, analysis, and
interpretation, it suggests that an epidemiologist ought to display the
character traits of excellence and integrity across all aspects of the
lifecycle of research and use the best scientific method when making
causal claims. This includes the development of a justified research
proposal, appropriate use of the general scientific method (e.g., study
design, analysis), and where relevant to support decision-making, use of
evidence synthesis methods (e.g., systematic review) that include risk of
error (e.g., chance, bias) assessment in the interpretation of findings [9].
Virtue ethics require epidemiologists to be transparent, open, honest,
9
Annals of Epidemiology 91 (2024) 8–11
and critical in the strengths and limitations of their scientific methods
and their judgments of causation based on research findings and the
well-established methods of causal inference (e.g., Hill’s criteria). Sec­
ond, consider the role of beneficence in the practice of causal inference
in epidemiology. For an epidemiologist, the ethical principle of benefi­
cence guides us to uncover disease causes, provide the greatest benefits
to society, improve health, prevent disease, minimize harm, and identify
modifiable factors for primary, secondary, and tertiary prevention [10].
Third, the ethical obligation to the profession and the community in the
practice of causal inference in epidemiology should be considered.
Duties and obligations in the ethical conduct of epidemiology research
and practice help define ‘how’ and ‘for whom’ we should act. It takes as
its starting point the role of ethics in achieving scientific results for
which research and scientific integrity in the epidemiology design,
conduct, and interpretation of findings are part of the causal explana­
tion. Furthermore, an epidemiologists’ duties and responsibilities are
upheld when they inform study participants of the risks and benefits of
the proposed research study, minimize harm, protect welfare, guard
privacy and confidentiality, disclose results fairly and openly, study
relevant health problems to communities, share data, and report results
to stakeholders [8,11]. Finally, epidemiologists should inform the sci­
entific community in peer-reviewed publications that they have deter­
mined that a causal relationship exists.
The collective goal to improve the public’s health was demonstrated
globally by the COVID-19 pandemic, where health professionals
worldwide were working to enhance their understanding of the COVID-
19 virus and applying that knowledge to identify prevention measures,
manage disease and develop vaccines. These efforts were demonstrated
in the forms of online healthcare tools, data trackers, scientific advisory
tables, and expedited research funding opportunities, and, in many
ways, they marked the contemporary worldwide practice of causal
inference.
Ethical challenges in the practice of digital epidemiology
The breadth of epidemiology research and practice brings to bear the
many facets of its use and application to improve the public’s health.
Traditionally, epidemiology uses data collected by public health
agencies, hospitals, health care systems, and health professionals. In
recent years, substantial amounts of data are available in digital traces
left by individuals on their mobile phones, the internet, social media
platforms, and other electronic devices. These digital data sources pro­
vide real-time information about disease and health dynamics in pop­
ulations worldwide, giving rise to a new niche of epidemiology called
‘digital epidemiology.’ In the recent pandemic, the rise of digital
epidemiology to control infectious disease outbreaks uncovered several
ethical challenges. For example, the COVID-19 pandemic forced gov­
ernments worldwide to accelerate the evaluation and implementation of
digital technologies to curb the pandemic without allowances for
building public trust and public engagement, as well as the option for a
specific purpose of individual autonomy and the process of informed
consent [12].
Ethical guidelines have successfully steered the conduct of epide­
miology and clinical research involving human participants. Collec­
tively, they express three core ethical principles, including respect for
persons (autonomy, informed consent, privacy protection, protection of
those with diminished autonomy), beneficence (promoting health and
treating disease, maximizing benefits, minimizing harms, do no harm,
concern for welfare); and justice (giving persons what they deserve,
equal access, fair distribution of burden and benefits, procedural justice
or due process) [8,13,14]. However, the COVID-19 pandemic and the
multi-technology approaches involved in public health control measures
led to the realization that additional frameworks in law, clinical ethics,
and public health ethics were needed to address several organizational
barriers, concerns for privacy, dignity, health equity, and ethico-legal
concerns including:
J. Salerno et al.
• Balancing individual liberty and protecting the public
• Managing potential conflicts of interest related to financial
contributors
• Engaging communities in ways that foster trust
• Using and managing surveillance data in ways that protect privacy
and confidentiality
• Allocating scarce resources equitably
• Serving immigrants and refugees
• Negotiating political contexts and constraints
• Complying with ethical and legal regulations, and
• Applying legal authority appropriately and consistently.
The role of digital health is universally recognized as the conver­
gence of digital technology with public health, healthcare, and society to
enhance healthcare delivery efficiency, aiding healthcare professionals
and individuals in managing illnesses and health risks, and promoting
health and well-being [15]. However, its benefits are not universal
owing to complex social and individual factors that contribute to in­
equalities in access to and adoption of information communication
technologies [16]. To illustrate, when comparing advanced economies
(e.g., U.S., Australia, Sweden) to emerging economies (e.g., India,
Indonesia, Brazil), a median of 76% vs. 45% report having a smart­
phone, 94% vs. 83% report owning a mobile phone, 90% vs. 60% report
using the internet, and 67% vs. 49% report using social media. Within
countries, there are also significant disparities, for example, in the use of
smartphones between the young (<35 years) and older ages (>50 years)
and in the use of social media which also varies by education and income
[17]. As a result of digital exclusion, prevention efforts and access to
healthcare were diminished during the pandemic leading to COVID-19
disproportionately affecting some geographic areas, communities, and
minority ethnic groups [18]. The COVID-19 crisis and the use of digital
tools have focused attention on the ongoing need for a formal approach
to the ethics of digital epidemiology and digital health more broadly,
especially where relevant laws or guidelines have not yet been devel­
oped or are in conflict, where a shared morality is not applicable given
innovations and emergent technologies, and where there is a lack of
consensus and conflicting priorities among relevant stakeholders and
institutions.
Departures from scientific objectivity: a cause of eroding trust in
epidemiology
Trust is a complex notion that is closely related to competence,
relational expectations and past negative experiences that influences the
uptake of science, new knowledge, or public health interventions such as
the COVID-19 vaccine [19]. The benefits of trust are as fundamental as
the roots of epidemiology, which is to improve the public’s health. There
are several key stakeholders for whom epidemiologists should be con­
cerned with ensuring an ongoing and trusting relationship: the public,
the research community, elected officials, governmental public health
officials, pharmaceutical industry, the medical community, journals,
and other online media.
Several examples from clinical trial research illustrate the roots and
pervasiveness of mistrust in science, including: (i) conflict of interest
disclosures and the negative perception to act on clinical trial findings
when disclosures indicated industry funding [20]; (ii) independent
re-analysis requirements related to journal publishing regarding the
requirement for an independent statistical evaluation at an academic
institution for industry-sponsored trials, rather than by statisticians
employed by the sponsor [21]; (iii) total censorship, whereby
company-funded research was not to be accepted if the first, last, or
corresponding author had been a company employee, investor, or paid
speaker during the previous two years [22,23]; (iv) exclusion from
advisory committees, when the focus was on regulatory reviews and for
which its potential member had industry ties [24,25].
A recent U.S. survey showed that trust in key public health
10
Annals of Epidemiology 91 (2024) 8–11
organizations is also lagging. Accordingly, when U.S. respondents were
asked, ‘How much do you trust the recommendations for your health
from the following groups?’; only 30% to 50% of respondents had a
‘great deal’ of trust in the Centers for Disease Control and Prevention,
their local and state health departments, the Surgeon General, the Na­
tional Institutes of Health, the Food and Drug Administration, and the
Department of Health and Human Services [26]. Using a COVID-19
example from an international perspective of predominately European
countries, a clear gradient between trust in health authorities and level
of vaccine acceptance was demonstrated across eight countries
(Denmark: 83%, U.K.: 73%, Sweden: 61%, Germany: 60%, Italy: 60%,
USA: 54%, France: 47%, Hungary: 47%, r = 0.982) highlighting the
important influence of governments and societal culture on health [27].
Public mistrust, confusion and the spread of misinformation and disin­
formation developed during COVID-19 when governments and official
information sources withheld relevant information from the public in an
attempt to ‘do no harm’ against a backdrop of contradictory information
[28]. Several COVID-19 examples additionally illustrate how science
and scientists with dissenting views were suppressed and censored by
technology companies (e.g., social media) and governments [29] addi­
tionally fueling public mistrust. To the extent that the public perceived
health professionals as being influenced by politics and other factors, a
lack of trust ensued for the professional community. Restoring trust in
epidemiology should aim to encourage critical reflection regarding the
loss of trust in the professional community, maximize the risk-to-benefit
ratio, bolster new ways to support epidemiological practice such as
infodemic surveillance and varied career paths that are part of modern
epidemiology [30], and maximize objectivity of the scientific process by
giving each scientific contribution its due regard whatever the inferred
motivations behind the research.
Conclusions
Epidemiology serves as the backbone of public health, and in recent
years, together, they have been under scrutiny due to related global
events such as the COVID-19 pandemic. Inconsistencies in data report­
ing, heterogenous or conflicting advice and public health measures
implemented across jurisdictions, and minimal effort to contextualize
risk and transmission at the local level are just a few examples of the
aftermath of the global COVID-19 crisis on our profession [31]. Amid
these events, the Ethics Committee began deliberating on the ethical
principles concerning epidemiology research and practice. We invited
interdisciplinary speakers from diverse backgrounds in a collaborative
effort to shed light on the recent global matters of epidemiology and
public health.
Despite the seemingly ubiquitous nature of digital sources of data
harnessed through digital epidemiology, the spread of the COVID-19
virus, and the far-reaching infodemic phenomenon, a global common­
ality shared was the persistence of health inequalities. Social and eco­
nomic context led to poorer outcomes: higher infection rates among
those in long-term care, those experiencing homelessness, and among
essential workers; higher hospital admissions, cases, and deaths among
racialized groups and lower income neighborhoods; barriers to access­
ing care, internet access and telemedicine in rural areas; ability to isolate
and support; and vaccine uptake [32–34]. Whether epidemiology and
public health aim to manage the use of digital data sources in
public-health decision-making, uncover and act on ‘cause-and-effect’
claims, or build public trust, used as a starting point for action, an ethical
lens helps to address the individual, population, and societal implica­
tions. We have supported using an ethical lens to address current and
emerging challenges in the areas of big data, genetic epidemiology,
stakeholder engagement, bioinformatics, and the recent global infec­
tious disease crisis (e.g., Ebola) [35–38]. A more formal ethical frame­
work to account for the societal risks and benefits of research and
practice has been introduced as translational bioethics, which offers
criteria such as the: “likelihood of success and significance of the
J. Salerno et al.
research in advancing public health; the degree to which the research is
likely to promote health equity; the projected economic and opportunity
costs in implementing the research; the ease of integration of discoveries
into the healthcare system; the public acceptability of the research; and
the possibility of unintended consequences” [39]. This article has
demonstrated that by re-visiting our historical foundations of epidemi­
ological research and practice, we maintain at the forefront our collec­
tive goal to perform the best science and to improve the public’s health.
In addition, epidemiologists can remain agile to the possibility of in­
novations in scientific methods and ethical frameworks to advance our
profession and enable future contributions to the field.
Author statement
All authors contributed to the conceptualization of the paper, writing
of the original draft, and writing, reviewing, and editing the final draft of
the paper.
CRediT authorship contribution statement
Salerno Jennifer: Conceptualization, Writing – original draft,
Writing – review & editing. Weed Douglas L.: Conceptualization,
Writing – original draft, Writing – review & editing. Pandey Chandra
M: Conceptualization. Crabb Victoria: Conceptualization, Writing –
original draft, Writing – review & editing. Peters Edward S.: Concep­
tualization, Writing – original draft, Writing – review & editing. Hlaing
WayWay M.: Conceptualization, Writing – original draft, Writing – re­
view & editing.
Declaration of Competing Interest
The authors declare that they have no known competing financial
interests or personal relationships that could have appeared to influence
the work reported in this paper.
Acknowledgments
In memoriam of Chandra M Pandey, MD, MS, PhD, co-author on this
manuscript. We would like to thank Dr. John Acquavella for his pre­
sentation at the ACE Annual Meeting. This paper reflects the views of the
authors, and it does not necessarily reflect the opinions of the American
College of Epidemiology (ACE), or the authors’ affiliated institutions.
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