Annals of Epidemiology 80 (2023) 37–42

Contents lists available at ScienceDirect

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

From the American College of Epidemiology

Current ethical and social issues in epidemiology

Jennifer Salerno, PhD a,b,⁎
, Steven S. Coughlin, PhD, MPH c,d
, Kenneth W. Goodman, PhD , e
]]
]]]]]]
]]

WayWay M. Hlaing, PhD f

a
Department of Family Medicine, Faculty of Health Sciences, McMaster University, Hamilton, ON, Canada
b
Department of Health Research Methods, Evidence, and Impact, Faculty of Health Sciences, McMaster University, Hamilton, ON, Canada
c
Department of Population Health Sciences, Medical College of Georgia, Augusta University, Augusta, GA
d
Institute of Public and Preventive Health, Augusta University, Augusta, GA
e
Institute for Bioethics and Health Policy, University of Miami Miller School of Medicine, Miami, FL
f
Division of Epidemiology and Population Sciences, Department of Public Health Sciences, University of Miami Miller School of Medicine, Miami, FL

a r t i cl e i nfo ABST RAC T

Article history: Purpose: The American College of Epidemiology held its 2021 Annual Meeting virtually, September 8–10,
Received 20 December 2022 with a conference theme of ‘From Womb to Tomb: Insights from Health Emergencies’. The American College
Received in revised form 1 February 2023 of Epidemiology Ethics Committee hosted a symposium session in recognition of the ethical and social
Accepted 1 February 2023
challenges brought to light by the coronavirus disease 2019 pandemic and on the occasion of the pub­
Available online 8 February 2023
lication of the third edition of the classic text, Ethics and Epidemiology. The American College of
Epidemiology Ethics Committee invited the book editor and contributing authors to present at the sym­
Keywords:
Ethics posium session titled ‘Current Ethical and Social Issues in Epidemiology.’ The purpose of this paper is to
Epidemiology further highlight the ethical challenges and presentations.
Public health Methods: Three speakers with expertise in ethics, health law, health policy, global health, health in­
Digital epidemiology formation technology, and translational research in epidemiology and public health were selected to pre­
Genetic epidemiology sent on the social and ethical issues in the current landscape. Dr. S Coughlin presented on the ‘Ethical and
Health informatics Social Issues in Epidemiology’, Dr. L Beskow presented on ‘Ethical Challenges in Genetic Epidemiology’, and
Dr. K Goodman presented on the ‘Ethics of Health Informatics’.
Results: New digital sources of data and technologies are driving the ethical challenges and opportunities in
epidemiology and public health as it relates to the three emerging topic areas identified: (1) digital epi­
demiology, (2) genetic epidemiology, and (3) health informatics. New complexities such as the reliance on
social media to control infectious disease outbreaks and the introduction of computing advancements are
requiring re-evaluation of traditional bioethical frameworks for epidemiology research and public health
practice. We identified several cross-cutting ethical and social issues related to informed consent, benefits,
risks and harms, and privacy and confidentiality and summarized these alongside more nuanced ethical
considerations such as algorithmic bias, group harms related to data (mis)representation, risks of mis­
information, return of genomic research results, maintaining data security, and data sharing. We offered an
integrated synthesis of the stages of epidemiology research planning and conduct with the ethical issues
that are most relevant in these emerging topic areas.
Conclusions: New realities exist for epidemiology and public health as professional groups who are faced
with addressing population health, and especially given the recent pandemic and the widespread use of
digital tools and technologies. Many ethical issues can be understood in the context of existing ethical
frameworks; however, they have yet to be clearly identified or connected with the new technical and
methodological applications of digital tools and technologies currently in use for epidemiology research and
public health practice. To address current ethical challenges, we offered a synthesis of traditional ethical
principles in public health science alongside more nuanced ethical considerations for emerging technolo­

Conflicts of 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.
⁎
Corresponding author. Department of Family Medicine, Faculty of Health Sciences, McMaster University, David Braley Health Sciences Centre, 100 Main Street West, 5th Floor,
Hamilton, L8P 1H6 ON, Canada. Tel.: (905) 525-9140 ext. 21224.
E-mail address: salernoj@mcmaster.ca (J. Salerno).

https://doi.org/10.1016/j.annepidem.2023.02.001
1047-2797/© 2023 Elsevier Inc. All rights reserved.
J. Salerno, S.S. Coughlin, K.W. Goodman et al.
gies and aligned these with lifecycle stages of epidemiology research. By critically reflecting on the impact
of new digital sources of data and technologies on epidemiology research and public health practice,
specifically in the control of infectious outbreaks, we offered insights on cultivating these new areas of
professional growth while striving to improve population health.
Introduction
The rise of digital sources of data both related and unrelated to
health has offered an unprecedented opportunity for computing and
use to support precision medicine and public health [1]. In relation to
the severe acute respiratory syndrome coronavirus 2, the application of
basic epidemiology principles, measures, and concepts to understand
the impact of the infection in communities and support public health
responses and planning efforts was evidenced and reinforced by the
emergence of worldwide coronavirus disease 2019 (COVID-19) epide­
miological tools and data trackers [2,3]. However, at the same time, the
digital shift highlighted a need for critical reflection of the role of
epidemiology in creating new knowledge and the corresponding
ethical considerations not only for epidemiologists but for cross-cutting
disciplines also involved in improving the public’s health, including
computer scientists, clinicians, and policymakers [4].
The ethical principles that may be encountered and applied by
epidemiologists in the conduct of their research have been discussed in
detail in the American College of Epidemiology (ACE) ethics guidelines;
these principles address valid or informed consent, privacy and con­
fidentiality protection, maximizing benefits from epidemiologic stu­
dies, minimizing risks and potential harms, and ensuring an equitable
balance of risks and benefits. Other important ethical issues in epide­
miology include maintaining public trust, communicating ethical re­
quirements to various stakeholders, and scientists’ obligations to
communities [5]. This paper is in part an effort to supplement the ACE
ethics guidelines in a number of specialized areas, including big data
[6], public and environmental health [7], and stakeholder engagement
[8]. In the current landscape, we recognize the need for further edu­
cation to address issues raised by digital tools and technologies and in
response to the ethical and social issues manifested during the COVID-
19 pandemic [9], including diverse global public health practices and
their effects on families and communities [10], layers of vulnerability
(e.g., location of residence, socioeconomic status, access to healthcare,
and social support) [11], and racial discrimination [12]. To address these
gaps and on the occasion of the publication of the third edition of the
keystone text, Ethics and Epidemiology [13], the ACE Ethics Committee
hosted a symposium at the 2021 ACE Annual Meeting, September 8–10,
2021. Three topic areas were presented: current ethical and social is­
sues in epidemiology (S.C.), ethical challenges in genetic epidemiology
(L.B.), and ethics in health informatics (K.G.). This report summarizes
and furthers the discussion of the speakers’ symposium presentations
by (i) providing an overview of the intersection of ethics and epide­
miology in key emerging areas of digital epidemiology, genetic epide­
miology, and health informatics, and (ii) offering tools to be used in
teaching in ethics and public health, including epidemiology.
Current ethical and social issues in epidemiology
Current and inter-related ethical and social issues in epidemiology
were discussed, including the professional practice of epidemiology
and the bioethical principles of epidemiological research, some of
which were detailed in the original ACE ethics guidelines, published in
2000 [5]. Recent challenges such as vaccine hesitancy and the in­
equitable distribution of vaccines during the COVID-19 pandemic
highlighted the important role of public health authorities in ensuring
fair access to vaccines and the collective need to address vaccine
38
Annals of Epidemiology 80 (2023) 37–42
© 2023 Elsevier Inc. All rights reserved.
hesitancy, increase public trust, and meet obligations to communities
to mitigate sustained transmission [14]. The connection between sci­
ence and politics was scrutinized: the politicization of public health
agencies such as the U.S. Centers for Disease Control and Preven­
tion, the disproportionate impact of COVID-19 on minorities, long-
standing health inequities and disparities in social determinants of
health, racial–ethnic discrimination and violence, the effects of climate
change, and digital epidemiology and the ethics of using personal in­
formation in the context of a pandemic. Many of these ‘ethico-social’
issues could be attributed to social media mis- and disinformation. As
the profession of epidemiology has acquired a more prominent public
voice and is increasingly recognized as the backbone of public health
planning and response, the role of epidemiologists in addressing these
topics has become progressively more important.
Digital epidemiology
Digital epidemiology is defined as ‘epidemiology that uses data that
was generated outside the public health system and was not intended
to be used for the primary purpose of doing epidemiology’ [15]. The
four components of digital epidemiology comprise (i) digital surveil­
lance, (ii) early warning and epidemic intelligence, (iii) rapid response,
outbreak control, and digital interventions, and (iv) risk communica­
tion to the public through the use of mobile apps and social media and
epidemic modeling that improves health policy [16].
Traditionally, health data and information guide and support the
core functions of public health, especially public health surveillance,
‘the continuous, systematic collection, analysis, and interpretation of
health-related data needed for the planning, implementation, and
evaluation of public health practice’ [17]. Health data and information
are the fuel for epidemiological methods that help us understand in­
fection transmission, describe disease occurrence (e.g., from human
cases, hospitalizations, and laboratory-confirmed positive cases) and
related consequences, including deaths; and monitor and report dis­
ease trends across person, place, and time. Contemporary digital epi­
demiological surveillance has leveraged nonhealth data sources such as
mobile phone data, social media posts, geospatial data, remote-sensing
data, and other unstructured novel approaches. These sources have
posed important challenges related to data fragmentation, data access,
data ownership, computing requirements, artificial intelligence (AI)
tools, cyber security risks, multifactorial risk assessments, and the need
for a diverse workforce [18]. Digital surveillance is not unlike traditional
public health surveillance in that its use should maximize benefits and
minimize harms. However, it additionally offers the advantage of faster
detection and response to disease outbreaks, earlier public health in­
tervention and messaging to society, and has the potential to increase
representation of individuals and groups who tend not to access face-
to-face healthcare services. The ability of public health surveillance
systems to provide useful and credible evidence based on high-quality
and accurate data that are also representative of the health-related
event over time are key notable shortcomings of digital surveillance
systems [19]. Digital surveillance systems are imperfect: the validity
and reliability of digital data itself are sometimes flawed, particularly
with respect to social media and Internet data, including that the data
may reflect the public’s awareness of disease, rather that its occurrence.
Internet search engines are also often modified, leading to poor pre­
dictability and replication over time. Furthermore, drawing
J. Salerno, S.S. Coughlin, K.W. Goodman et al.
epidemiologic measures from online data depends on trending topics
and media influence. As well, data accuracy may be confounded by
seasonality or the current social milieu that might or might not be
relevant to a particular current or emerging epidemic. Concomitant
ethical issues include the potential for stigmatization of behaviors or
groups when nonhealth data based on keywords/search terms are
presented as ‘risk factors,’ the breakdown of public trust through in­
accuracies and false detections, poor risk communication, and the in­
ability to demonstrate informed or valid consent with online
commercial entities [20].
COVID-19 fostered expanding guidance for the use of digital tech­
nologies and data sources, including personal data generated from cell
phones, wearables, video surveillance, social media, Internet searches
and news, and crowd-sourced symptom self-reports in digital disease
surveillance [21]. Key ethical concerns include
(i) Privacy and confidentiality, infringements on autonomy and a
lack of informed or valid consent when personal data from cell
phones, geolocation and other apps, and social media are shared
with governments and the public for COVID-19 alerts, mobility
tracking, contact tracing, and quarantine orders;
(ii) Data representation and inequity, often related to gaps in
Internet use and mobile phone ownership, which currently exist
for some demographic groups: aged 65+ years, annual house­
hold income < 30k, and less than high school education, not
shown for younger adults, college graduates, and high-income
households (75k+), and notable disparities in the use of tech­
nology for rural adults among the surveyed U.S. population [22].
Lower adoption may exacerbate personal and social harms
through biased datasets and under-representation of vulnerable
social groups;
(iii) Risk of error and misinformation, due to use of diverse data
sources collected with expanded scope and speed and the need
to perform validity and reliability checks on those data and any
newly built algorithms with the potential for personal, social,
and economic harms;
(iv) The need for accountability, of those who use new data sources,
processes, and analyses for disease surveillance, and the need
for transparency, public trust, and public participation to en­
hance public health strategies as a result of those efforts [21].
Similar ethical issues have been identified in the use of AI pro­
grams in infectious disease surveillance: data ownership, sharing
and control, lack of transparency with respect to data collection
processes and structures, challenges in obtaining informed consent
and justifying exceptions to consent standards, mistrust in govern­
ments, the role of anonymization and pseudonymization, fear of
privacy violations, discrimination, and stigmatization [23].
Ethical challenges in genetic epidemiology
Perspectives on big data research were addressed in the context
of a hypothetical prospective cohort study to collect biospecimen
data for whole-genome sequencing, access clinical data from elec­
tronic health records (EHRs) to examine medications and test re­
sults, and gather real-time monitoring data on lifestyle and
behavioral information by mobile health devices, named ‘The Million
American Study’.
Genetic epidemiology investigators study the role of genes, en­
vironmental and lifestyle exposures, and their interactions (i.e.,
gene–gene and gene environment) in human populations, and is the
backbone for identifying individualized health solutions for patients,
also referred to as ‘precision medicine.’ The ability of genetic epi­
demiological research to contribute to novel therapies and public
health involves the development and implementation of large-scale
prospective cohort epidemiological studies such as the U.K. Biobank
39
Annals of Epidemiology 80 (2023) 37–42
(https://www.ukbiobank.ac.uk/) and the U.S. ‘All of Us’ (https://
allofus.nih.gov/) research programs [24]. These large-scale research
studies exemplify ‘big data research’ and are feasible due the
widespread availability of genomic sequencing methods and other
scientific advancements (i.e., the various omics technologies) and
the increase in digital technologies used in healthcare (e.g., elec­
tronic medical records) and outside of healthcare (e.g., social media,
mobile health trackers)—all coupled with reduced costs. These ra­
pidly evolving scientific and technological advances have under­
scored several ethical concerns for individuals and populations [25].
Potential benefits from genetic epidemiology research include a
range of direct health and indirect or nonhealth-related benefits to
individual participants and to society. These benefits include
(i) Health information, related to the return of clinically actionable
results owing to the presence of a particular gene variant;
(ii) Risk factor modification, related to the indication of risk and any
need for preventive action (e.g., exercise more, eat healthier
foods);
(iii) Genetic information, provided about the absence of a deleterious
gene variant;
(iv) Long-term positive impact on health, due to the potential to re­
ceive meaningful genetic variant data in the future;
(v) Ancillary health benefits, from the monitoring of personal health
data (e.g., lifestyle, other behaviors);
(vi) A sense of altruism or civic duty, so as to benefit society and
contribute to advancing scientific knowledge for future gen­
erations [26].
Participation in genetic epidemiology studies entails several risks
for participants. The perspective of risk may vary across individuals
and data sources. The following risks have been perceived as likely to
occur in genetic epidemiology studies with the potential to lead to
an adverse outcome: (i) unintended access to identifying informa­
tion due to hacking, breach, or triangulation; (ii) permitted but po­
tentially unwanted use of information such as when objectional
research topics are pursued or information is used for nonresearch
purposes (e.g., law enforcement); (iii) the nature of genetic in­
formation; (iv) longitudinal research related to the open-ended de­
sign, limits on the ability to withdraw, and external changes (e.g.,
participants’ health) [27]. Differential risk perceptions were identi­
fied in interviews with diverse U.S. thought leaders about data types
collected or generated for precision medicine research and found
electronic health data as the riskiest, followed by genomic data and
mobile device data. Electronic health data was perceived as the
riskiest due to concerns about identifiability and misuse, along with
the potential for stigmatization or discrimination due to the per­
sonal and sensitive nature of the data. Genomic data was perceived
as risky due to the potential for novel risks that are unfamiliar to and
intangible for individuals, risks associated with the return of genetic
results of an uncertain nature and the need for resources and ex­
pertise to manage this appropriately, and the implications of genetic
information for individuals and their families. Mobile device data
was perceived as risky due to its volume and granularity, concerns
about privacy and identifiability, and its monitoring functions and
ability to track activities, behaviors, and locations [28].
These risks were expected to manifest in one or more adverse
event or harm. They have been reported to include
(i) Physical harm, due to unnecessary medical actions based on the
return of research results that were erroneous, false, or un­
warranted, or where genetic variants of an uncertain or mis­
communicated clinical significance led to dramatic medical
interventions by individuals;
(ii) Dignitary harm, due to use of biospecimens or research data that
individuals find morally objectionable;
J. Salerno, S.S. Coughlin, K.W. Goodman et al.
(iii) Group harm, due to the use of research data and study findings
that perpetuate stereotypes and cause stigmatizing or dis­
criminatory consequences for social groups, or reflect nega­
tively on socially identifiable populations, vulnerable
populations, or certain disease groups;
(iv) Psychological harm, due to fear, distress, or anxiety due to the
receipt of genetic results that may not be fully understood by
individuals or not fully clarified in terms of genetic or risk
status, and the psychological harm from unintended access to
stored data [26].
Ethics in health informatics
Contemporary ethical challenges in the field of biomedical and
health informatics were discussed, including AI and machine
learning (ML), big data, data sharing and privacy, duties to use and
manage new technology, and ethics and public policy.
The field of biomedical and health informatics embraces a pro­
fessionally diverse group defined by skills that allow them to con­
tribute to the health of individuals and populations. The field
supports the ethical collection, storage, analysis, interpretation, use,
and communication of electronic patient healthcare information and
strives to embrace a patient-centered approach, although, most
often, the professional groups in the field are not directly involved in
patient care. The ethics guidelines by the American Medical
Informatics Association [29] outlined the ethical conduct of the field,
including the duties and obligations of its professional groups to
various stakeholder groups as follows:
(i) Patients, by upholding confidentiality practices, following in­
formatics standards outlined in institutional and government
policies, and handling of patient data consistent with patients’
understanding and the stated purposes, goals, and intentions of
authorizing institutions;
(ii) Colleagues, by supporting team members’ work, advising on
potential system or processing errors that may in turn affect
patient safety, and advocating for the familiarity and use of the
American Medical Informatics Association ethics guidelines;
(iii) Organizations and employers, by understanding and respecting
the legal, ethical, and policy requirements of them and to act
when violations to patients and their health information occur;
(iv) Society and research, by being cognizant of the implications of
their work and ensuring the balance of public health benefits
with ethical obligations to individual patients, fostering ethi­
cally sound research, and following research ethics guidelines
involving human subjects [29].
AI and ML pose additional ethical challenges for developers, data
users, and institutions for which health is a value of utmost im­
portance. A subset of AI, ML software, uses information to improve
subsequent analyses (i.e., ‘learn’ as would be expected from human
intelligence) using computational algorithms and can be broadly
described as ‘techniques that fit models algorithmically by adapting
to patterns in data.’ [30,31]. Key ethical issues include (i) the ob­
ligation to uphold the professional values of trust, transparency, and
reproducibility as they relate to ML software and programming and
to make publicly available code components and modifications, (ii)
the need to mitigate the risk of bias related to any embedded racial,
ethnic, gender, or other biases in algorithms and associated datasets
that can distort results and harm individuals or communities (re­
ferred to as algorithmic bias), (iii) duty to use tools and health in­
formation that improve preventive healthcare, and (iv) the
requirement of institutions to promote the ethically optimized use of
novel data tools through sustained research and education for its
developers and users, and a commitment to conduct robust eva­
luation in the context of its implementation (i.e., real world) [32].
40
Annals of Epidemiology 80 (2023) 37–42
Some contexts are especially challenging. In behavioral health,
for instance, data collection and use and the algorithms that analyze
that data might address the prediction of suicide and treatment
resistance for depression, dementia, or sexual dysfunction. AI sys­
tems have the potential to uncover emotional, mental health, and
social factors with implications for prevention and for wellness-
promoting behaviors. The use of ML in behavioral health entails
significant risks of
(i) Stigma and under-reporting, due to a lack of treatment-seeking
behavior by individuals;
(ii) Undercoding, because providers often care for patients with
comorbidities and are less likely to include billing and re­
imbursement codes for mental health disorders;
(iii) Lack of reliable and objective biomarkers, due in part to illness
biology and the challenges of using unstructured data from
providers’ notes found in EHRs;
(iv) Algorithmic biases, due to data missingness or a lack of re­
presentative data capture in EHRs and other health information
data sources that can undermine prediction models;
(v) Inappropriate use, interpretability/explainability, because a lack of
either transparency or documentation of reasoning behind re­
commendations made by algorithms;
(vi) A lack of trust, given the need to build trust with end users who
are often the clinicians tasked with clinical decision-making
and patients who seek to optimize their care choices [33].
The potential benefits and impact of big data are now well-re­
cognized, including the ability to identify preventive, diagnostic, and
therapeutic benefits for individuals and populations through map­
ping and data linkage, global data sharing, and cloud computing [6].
‘Big data’ refers to complex and large amounts of data accumulated
rapidly from heterogeneous data sources that are novel and often
digital (e.g., mobile devices, EHRs, and social media) and can be
characterized by the 5 Vs of volume, velocity, variety, veracity, and
value [34]. An overview of the ethical issues related to these com­
putational advancements and big data research reported privacy and
confidentiality, informed consent, and fairness and justice as the
most significant [35]. With health data privacy at the core of efforts
to address the challenges of big data, the duties and obligations of
data stewards include (i) improving privacy protections with se­
curity mechanisms and actions to deter unauthorized uses; (ii)
creating accountable oversight for all data stewards to build an in­
creased sense of trust, value, and motivation and involves institu­
tions and governments reviewing and approving collections and
analyses of big data; (iii) improving individuals’ and communities’
digital literacy while simultaneously teaching researchers to ap­
preciate that the collection and use of others’ health information is a
privilege [32].
Ethical lens applied to emerging areas of epidemiology research
Epidemiologists are well versed in the need to account for the
observational nature of their data sources and study designs [36],
and emerging topics underscored at the 2021 ACE Annual Meeting
and discussed further here provide an opportunity to integrate the
stages of epidemiology research planning and conduct with relevant
ethical issues. Using the Canadian Institutes of Health Research In­
tegrating Ethics and the Knowledge-to-Action Cycle as a guiding
framework [37], we focus on the specific ethical challenges and
opportunities discussed in these emerging topic areas (digital, ge­
netic, and health informatics epidemiology) and align them to the
applicable research stages relevant to most epidemiologists. Table 1
is intended for epidemiologists in academic and nonacademic set­
tings. It is designed as a potential teaching tool in ethics, public
health, and epidemiology curricula in response to the need to shed
J. Salerno, S.S. Coughlin, K.W. Goodman et al. Annals of Epidemiology 80 (2023) 37–42

Table 1
Ethical lens applied to emerging areas* of epidemiology research: examples

Stages Ethical considerations

Establish partnerships 1. Cobuild/partnerships, for example, develop tools and knowledge for clinicians on how best to integrate risk prediction into practice and
data developers on how best to contextualize AI.
2. Inclusiveness, for example, contextualize data sources, data collection methods, and systems; foster AI education and training for the public,
researchers, and data stewards.
3. Governance, for example, develop data (sharing) agreements, procedural documents, maintain data security, accountability, and have
reporting structures in place when working with sensitive data.
4. Reciprocal relationships, for example, data producers and users obligated to engage in responsible scientific conduct, and appropriate data
access and sharing.
Form research question • Beneficence, for example, maximize benefits to society, public health, and communities and minimize potential harms, especially when
big data research is positioned as exploratory and hypothesis-generating and the balance of benefits to harms is potentially unknown.
Study design • Privacy and confidentiality, for example, apply ethics-informed technical solutions, methodologies, and mitigation strategies such as
passwords, encryption, auditing, restricting data access, anonymizing tactics, rules, and procedures.
• Beneficence, for example, set realistic expectations among participants as they relate to their participation in big data research to reduce the
potential for physical and psychological harms, and maximize benefits; decide carefully which genomic research results will be offered
considering whether or not results are clinically actionable.
• Obligations to patients, families, and communities, for example, commensurate allocation of research resources and capacities to the ethical
process of returning genomic research results, their interpretation, and the potential need for counseling and clinical referral.
• Minimize harms, for example, depending on which individuals and groups are represented by the data, there is the risk of biased datasets,
data mis- or under-representation, stigmatization, and risk of misinformation.
• Trust, transparency, for example, professional duty to ensure methods and data analysis plans are articulated, have been validated, will be
reported, and recognize the implications and consequences of knowledge generated.
IRB review • Respect for persons, beneficence, and justice, for example, apply ethical guidelines, frameworks, and principles to the use of health and
nonhealth data sources; affiliated sectors and institutions ought to ensure the protection of human research participants and their data.
• Data stewardship, for example, engage in responsible scientific conduct; engage in appropriate data access and sharing practices, including
robust safeguards, data protections, and access controls.
• Regulatory compliance, for example, commitment to professional development, education, and training on evolving regulations, standards of
practice, and implications for research studies.
Population • Principles of public health ethics, for example, maximize benefits for society, public health, and communities, value equity and fairness,
civil liberties, and rights.
• Public trust, for example, avoid misinformation, inaccuracies, and false detections when developing new methods; promote strategic
communication.
• Justice, for example, minimize the potential for algorithmic biases as it relates to AI and ML to reduce harm to individuals and groups;
develop awareness of how health information is collected, recorded, and interpreted and biases inherent in approaches linked to systems,
practices, and individual behaviors; collect additional information for specific populations to improve AI models and provide guidance on
applicability of findings based on algorithms.
• Harms, for example, avoid physical, dignitary, group, and psychological harms.
• Obligations to patients, colleagues, organizations, and society, for example, engage in ethically sound research and practice when using health
informatics data.
Data sources • Privacy and confidentiality, for example, when linking and sharing numerous data sources and the potential to uncover individual health
and social information, leading to stigmatization, discrimination, identifiability, and data misuse of a personal nature.
• Harms, for example, recognize the potential for dignity and group harms.
• Justice and adequate data representation, for example, biased datasets, data missingness, and mis- or under-representation of data from
certain individuals or groups due to the social determinants of health.
• Respect for persons, for example, whether or not individuals have truly provided their data voluntarily, and with adequate and valid
informed consent.
• Data stewardship and minimize risks, for example, data integrity and sound processes to prevent human error and maximize access;
minimize breaches and triangulation by using independent data access committees and certificates of confidentiality; data misuse using
laws, rules, and procedures.
• Respect for persons, for example, through data sharing, linkage, and use by commercial entities, a lack of data control and autonomy, sense of
involuntariness, and lack of informed consent; and when procedures in this regard are largely unknown and potentially variable.
• Duty to use digital tools and technologies, for example, improves prevention and healthcare; use reliable and objective data.
• Beneficence, for example, data sharing is fundamental to advancing science, human health, and well-being.
Data analysis • Trust, transparency, for example, as it relates to new algorithms, need to perform validity and reliability checks; report code components
and its modifications, software processes, and programming; use robust methods and statistics and reporting.
• Obligations to patients, families, and communities, for example, to minimize the risk of errors.
• Research integrity, for example, recognize technical limitations and seek consultation when needed; address and correct for bias by using
careful data analysis plans involving algorithm modifications or bias suppression, bias filters, or antibias features; optimize reporting.
Drawing conclusions • Conflict of interest, for example, promote and maintain an environment of research integrity, professional, and ethical conduct by
disclosure of any conflicts of interest.
• Trust, transparency, for example, be cognizant of interpretations and the potential for group harms, of nonhealth data to be labeled as ‘risk
factors’ and the breakdown of public trust through inaccuracies and false detections coupled with poor risk communication; optimize
reporting completeness and reasoning behind recommendations.
• Awareness, for example, account for technical and social contexts, including data collection methods, systems, and processes; and economic
and social structures and barriers.
• Societal contributions, for example, encourage the adoption of informatics approaches and efforts to improve the quality of data.
• Research integrity, for example, promote data sharing and reuse to enhance transparency, reproducibility, and validity of conclusions.

Abbreviations: AI, artificial intelligence; IRB, Institutional Review Board; ML, machine learning.
*
Relevant stages to emerging areas discussed in the paper: digital epidemiology, genetic epidemiology, health informatics.

additional light on efforts to integrate the technical, methodological, Conclusions

and ethical challenges of the emerging topics discussed in this paper.
It is of value to epidemiology research and education. Recent public health crises, including the COVID-19 pandemic,
have changed epidemiology. Epidemiologists are sharing their data

41
J. Salerno, S.S. Coughlin, K.W. Goodman et al.
using online platforms and using preprint servers, and journals are
publishing at a faster rate. Epidemiology itself is expanding, with the
involvement of researchers from other fields (e.g., mathematics,
computer science, and network science) who have been contributing
their ideas and expertise. We have here highlighted the ethical
considerations that epidemiologists are likely to encounter as a re­
sult of their increasingly recognized role in research and public
health control of infectious disease outbreaks, especially regarding
new data sources and technologies in the emerging fields of digital
epidemiology, genetic epidemiology, and public health informatics.
Our synthesis of the ethical challenges and opportunities in these
areas is intended to serve to highlight salient examples. They will
likely grow and be refined with increased attention to future re­
search and scholarly work at the intersection of current technical,
methodological, and ethical issues [38].
The ACE Ethics Guidelines were published more than two decades
ago with input from ACE members and other leading epidemiologists.
In view of the many developments in the field, it is important to per­
iodically revisit those foundational guidelines and identify opportu­
nities for further ethical reflection and appraisal. The ACE Ethics
Committee has been dedicated to identifying opportunities and filling
those gaps through capacity-building efforts such as hosting sympo­
sium sessions at the ACE Annual Meeting and through timely pub­
lications of books and journal articles. To address the current ethical
challenges brought to light during the pandemic, we have offered a
synthesis of traditional ethical principles and identified more nuanced
ethical considerations for emerging areas. We have also aligned these
according to the lifecycle stages of epidemiology research to better
support teaching and learning at the intersection of ethics, public
health, and epidemiology. By critically reflecting on the impact of new
digital sources of data and technology on epidemiology research
planning and conduct and public health practice, specifically in the
control of infectious disease outbreaks, we have tried to offer insights
on cultivating these new areas of professional growth for epidemiolo­
gists and others with the goal of promoting core values in the service of
improved population health.
CRediT authorship contribution statement
All authors contributed to the Conceptualization of the paper,
Writing – original draft, and Writing – review & editing the final
draft of the paper.
Acknowledgments
We would like to thank Dr. Laura Beskow for her presentation at
the ACE Annual Meeting and her contributions to this publication.
This paper reflects the views of the authors and it does not ne­
cessarily reflect the opinions of the American College of
Epidemiology (ACE), or the authors’ affiliated institutions.
References
[1] Velmovitsky PE, Bevilacqua T, Alencar P, Cowan D, Morita PP. Convergence of
precision medicine and public health into precision public health: toward a big
data perspective. Front Public Health 2021;9:561873.
[2] Dong E, Du H, Gardner L. An interactive web-based dashboard to track COVID-19
in real time. Lancet Infect Dis 2020;20(5):533–4.
[3] How epidemiology has shaped the COVID pandemic. Nature 2021;589:491-92.
[4] Pearson TA, Califf RM, Roper R, Engelgau MM, Khoury MJ, Alcantara C, et al.
Precision health analytics with predictive analytics and implementation re­
search: JACC state-of-the-art review. J Am Coll Cardiol 2020;76(3):306–20.
[5] American College of Epidemiology. American College of Epidemiology Ethics
Guidelines. Available at: 〈https://www.acepidemiology.org/ethics-guidelines〉
[Accessed August 28, 2022].
[6] Salerno J, Knoppers BM, Lee LM, Hlaing WM, Goodman KW. Ethics, big data and
computing in epidemiology and public health. Ann Epidemiol 2017;27(5):297–301.
42
Annals of Epidemiology 80 (2023) 37–42
[7] Salerno J, Peters ES, Pinney SM, Morain S, Hlaing WM. Untangling the ethical
intersection of epidemiology, human subjects research, and public health. Ann
Epidemiol 2019;34:1–5.
[8] Salerno J, Coleman KJ, Jones F, Peters ES. The ethical challenges and opportu­
nities of implementing engagement strategies in health research. Ann Epidemiol
2021;59:37–43.
[9] Hlaing WM, Kushch NA, Wells AE, Goodman KW. Common topics discerned in
ethics in epidemiology and public health syllabi: in-depth review. Ann
Epidemiol 2021;60:31–4.
[10] Abrams EM, Szefler SJ. COVID-19 and the impact of social determinants of health.
Lancet Respir Med 2020;8(7):659–61.
[11] Maeckelberghe E. Ethical implications of COVID-19: vulnerabilities in a global
perspective. Eur J Public Health 2021;31(Suppl. 4):Siv50–3.
[12] Addo IY. Double pandemic: racial discrimination amid coronavirus disease 2019.
Soc Sci Humanit Open 2020;2(1):100074.
[13] Coughlin SS. Ethics and epidemiology. 3rd ed. Oxford University Press; 2021.
[14] Omer SB, Benjamin RM, Brewer NT, Buttenheim AM, Callaghan T, Caplan A, et al.
Promoting COVID-19 vaccine acceptance: recommendations from the Lancet
Commission on Vaccine Refusal, Acceptance, and Demand in the USA. Lancet
2021;398(10317):2186–92.
[15] Salathe M. Digital epidemiology: what is it, and where is it going? Life Sci Soc
Policy 2018;14(1):1–5.
[16] Kostkova P, Saigi-Rubio F, Eguia H, Borbolla D, Verschuuren M, Hamilton C, et al.
Data and digital solutions to support surveillance strategies in the context of the
COVID-19 pandemic. Front Digit Health 2021;3:707902.
[17] World Health Organization. Health Topics: Public Health Surveillance. Available
at: 〈http://www.emro.who.int/health-topics/public-health-surveillance/index.
html〉 [Accessed August 28, 2022].
[18] Morgan OW, Abdelmalik P, Perez-Gutierrez E, Fall IS, Kato M, Hamblion E, et al.
How better pandemic and epidemic intelligence will prepare the world for fu­
ture threats. Nat Med 2022;28(8):1526–8.
[19] Centers for Disease Control and Prevention. Updated guidelines for evaluating
public health surveillance systems: recommendations from the guidelines
working group. MMWR 2001;50(RR-13):1–51.
[20] Aiello AE, Renson A, Zivich PN. Social media- and internet-based disease sur­
veillance for public health. Annu Rev Public Health 2020;41:101–18.
[21] Mello MM, Wang CJ. Ethics and governance for digital disease surveillance.
Science 2020;368(6494):951–4.
[22] Pew Research Center. Internet & Technology. Available at: 〈https://www.
pewresearch.org/〉 [Accessed January 30, 2023].
[23] Zhao IY, Ma YX, Yu MWC, Liu J, Dong WN, Pang Q, et al. Ethics, integrity, and
retributions of digital detection surveillance systems for infectious diseases:
systematic literature review. J Med Internet Res 2021;23(10):e32328.
[24] Collins FS, Doudna JA, Lander ES, Rotimi CN. Human molecular genetics and
genomics - important advances and exciting possibilities. N Engl J Med
2021;384(1):1–4.
[25] Howe Iii EG, Elenberg F. Ethical challenges posed by big data. Innov Clin
Neurosci 2020;17(10–12):24–30.
[26] Beskow LM, Hammack CM, Brelsford KM. Thought leader perspectives on
benefits and harms in precision medicine research. PLoS One
2018;13(11):e0207842.
[27] Beskow LM, Hammack CM, Brelsford KM, McKenna KC. Thought leader per­
spectives on risks in precision medicine research. Big data, health law, and
bioethics. Cambridge, UK: Cambridge University Press; 2018.
[28] Beskow LM, Hammack-Aviran CM, Brelsford KM. Thought leader comparisons of
risks in precision medicine research. Ethics Hum Res 2020;42(6):35–40.
[29] Petersen C, Berner ES, Cardillo A, Fultz Hollis K, Goodman KW, Koppel R, et al.
AMIA's code of professional and ethical conduct 2022. J Am Med Inform Assoc
2022;30(1):1–5.
[30] Mooney SJ, Pejaver V. Big data in public health: terminology, machine learning,
and privacy. Annu Rev Public Health 2018;39:95–112.
[31] Helm JM, Swiergosz AM, Haeberle HS, Karnuta JM, Schaffer JL, Krebs VE, et al.
Machine learning and artificial intelligence: definitions, applications, and future
directions. Curr Rev Musculoskelet Med 2020;13(1):69–76.
[32] Goodman KW. Ethics in health informatics. Yearb Med Inform
2020;29(1):26–31.
[33] Walsh CG, Chaudhry B, Dua P, Goodman KW, Kaplan B, Kavuluru R, et al. Stigma,
biomarkers, and algorithmic bias: recommendations for precision behavioral
health with artificial intelligence. JAMIA Open 2020;3(1):9–15.
[34] Fuller D, Buote R, Stanley K. A glossary for big data in population and public
health: discussion and commentary on terminology and research methods. J
Epidemiol Commun Health 2017;71(11):1113–7.
[35] Ienca M, Ferretti A, Hurst S, Puhan M, Lovis C, Vayena E. Considerations for ethics
review of big data health research: a scoping review. PLoS One
2018;13(10):e0204937.
[36] Khoury MJ, Ioannidis JP. Medicine. Big data meets public health. Science
2014;346(6213):1054–5.
[37] Canadian Institutes of Health Reseach. Integrating Ethics and the Knowledge-To-
Action Cycle. Available at: 〈https://cihr-irsc.gc.ca/e/48802.html〉 [Accessed
August 28, 2022].
[38] Delgado J, de Manuel A, Parra I, Moyano C, Rueda J, Guersenzvaig A, et al. Bias in
algorithms of AI systems developed for COVID-19: a scoping review. J Bioeth Inq
2022;19(3):407–19.