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. 2021 Oct 20;23(10):e32328. doi: 10.2196/32328

Table 1.

Summary of ethical issues identified from utilizing digital surveillance systems for infectious diseases.

Article type, and
authors and year
Country Journal 1. Sampling frame
2. Sample size
3. Age
4. Gender ratio (F:M)
5. Sampling method
Study aim Context of
studies
Methodology and methods Key and relevant findings
Journal articles (n=5)







Degeling et al (2020) [17] Australia BMC Medical Ethics 1. People who had previously volunteered to take part in research and topic-blinded social media advertising on Facebook
2. n=50
3. 18-34 y (n=15); 35-54 y (n=22); and >55 y (n=11)
4. 27:21
5. Random sampling
Examine the public acceptability and ethical concerns of community juries on integration of big data analytics (BDA) into communicable disease control BDA was perceived as intrusive and a threat to privacy. Qualitative; deliberative group sessions; Delphi study approach Almost all jurors supported data linkage for public health research and suggested deidentification practices. Three juries raised several conditions related to system oversight and security being met. One concern was about loss of privacy and mistrust in governments to run secure and effective systems.

Kim et al (2021) [18] Korea Social Science & Medicine 1. Comments from January to May 2020 made by Korean mothers on 15 internet groups called “mom cafes”
2. n=3729
3. N/Aa
4. Female
5. Purposive sampling
Examine how Korean mothers understand morality in the context of COVID-19 contact-tracing surveillance Korean mothers uploaded COVID-19 patient information on the boards of online groups for discussion. Qualitative; database digital ethnography; reflexive thematic analysis Nonmaleficence is the core morality considered by Korean mothers.

Degeling et al (2020) [19] Australia BMJ Open 1. The Australian general population
2. n=2008
3. Median 46 y (18-89 y)
4. 1015:993
5. Purposive sampling
Compare the value of core surveillance system attributes to the Australian public before and during the early stages of the COVID-19 pandemic New technology raised concerns of privacy disclosure and misuse in the COVID-19 outbreak. Quantitative; online survey After the COVID-19 pandemic, participants demonstrated greater preference for a high data security surveillance system for public health.

Thomas et al (2020) [20] Australia JMIR Public Health Surveillance
  1. Australians (excluding health care professionals or people who had been tested for COVID-19)

  2. n=1500

  3. ≥18 y

  4. 1:1

  5. Purposive sampling

Investigate the ethical issues of adopting the Australian government’s COVID safe app App-based contact tracing for curbing the transmission of COVID-19 needs widespread adoption. Quantitative; online national survey Privacy, data storage, and technical functions are ethical issues that hinder contact-tracking apps.

Degeling et al (2019) [21] Australia Health Research Policy and Systems 1. Australian-based policy makers and experts in infectious diseases, epidemiology, food safety, health informatics systems, and health and technology law
2. n=44
3. N/A
4. N/A
5. Purposive sampling
Identify ethical issues in the adoption and effective implementation of a digital surveillance tool Early detection of infectious disease outbreaks involves lack of social license or ethical and legal considerations. Mixed method; online survey; framework analysis Infectious disease monitoring systems raise issues such as personal privacy, forensic risks, potential unintended consequences, and the weakening of public trust.
Reports (n=24)







Sweeney (2020) [22] United Kingdom Nature Machine Intelligence N/A Balance protecting public health with safeguarding civil rights regarding contact-tracing apps Contact-tracing apps were used in COVID-19 surveillance but were less understood by people. Discussion paper Contact-tracing apps debate on protecting public health with safeguarding civil rights.

Gilbert et al (2019) [6] Australia Asian Bioethics Review N/A Highlight the urgency of having an ethical framework to guide the use of new technologies in communicable disease surveillance and control There is considerable public opposition to allowing public health authorities access to personal health data for infectious disease surveillance. Discussion paper Informed public discussion, greater transparency, and an ethical framework will be essential to build public trust in the use of new technology for communicable disease control.

Schwalbe et al (2020) [23] United States Lancet N/A Artificial intelligence (AI) use in low- and middle-income countries AI-driven intervention research in global health has less addressed ethical, regulatory, or practical considerations. Discussion paper Addressing privacy and security in digital development involves careful consideration of which data are collected and how data are acquired, used, stored, and shared.

Garattini et al (2019) [2] United Kingdom Philosophy & Technology N/A Provide a moral foundation for the societal acceptance and responsible development of technological advancement There are many ethical impacts when applying BDA in infectious diseases. Discussion paper Automation and algorithmic reliance impact freedom of choice; BDA complexity impacts informed consent; reliance on profiling impacts individual and group identities and justice/fair access; and increased surveillance and population intervention capabilities impact behavioral norms and practices.

Parker et al (2020) [3] United Kingdom Journal of Medical Ethics N/A Outline ethical considerations in the deployment of digital surveillance systems for public health response Mobile phone contact-tracing apps have raised many ethical questions in the COVID-19 pandemic. Discussion paper Privacy, liberty, responsibilities, data management, public trust and confidence, equity, fairness, justice, and data consistency need to be addressed in the deployment of mobile phone apps.

Katapally (2020) [24] Canada Journal of Medical Internet Research N/A Outline an evidence-based global digital citizen science policy, which provides a theoretical and methodological basis for ethically sourcing big data from citizens to tackle pandemics such as COVID-19 A cohesive societal effort with citizens’ full support is needed in pandemics. Discussion paper One of the biggest ethical challenges is data privacy and security. Individuals’ rights to privacy and anonymity through advanced encryption and secure server storage processes, informed consent, the ability to dropout and delete their own data, and data co-ownership, should be priorities.

Mbunge (2020) [25] Eswatini Diabetes & Metabolic Syndrome: Clinical Research & Reviews N/A Analyze the potential opportunities and challenges of integrating emerging technologies, including 5G technology, AI, and big data, into COVID-19 contact tracking Contact-tracing technologies have limitations when used in the COVID-19 pandemic. Literature review Ethical or legal challenges might be socioeconomic inequalities in developing counties; security risks such as data security, confidentiality, integrity, and data availability of patients and contacts in COVID-19; the privacy issues of patients, which may lead to mental health problems; consent and voluntariness; and discrimination.

Garg et al (2020) [26] India JMIR Public Health and Surveillance N/A Describe Aarogya Setu, a first-of-its-kind participatory disease surveillance initiative in India and its ethical considerations Opt-in, data integrity, and ethical concerns need to be addressed when using the new system for the COVID-19 pandemic. Case report The main ethical dilemma is how to ensure data protection and proper ethics while obtaining the benefits of public health surveillance, and how to ensure the ethical use of collected data and protect individual privacy.

Denecke (2017) [27] Switzerland Life Sciences, Society and Policy N/A Highlight the ethical issues that should be considered when integrating digital epidemiology with current practice and develop an ethical assessment model for digital disease detection (DDD) technologies Usage of digital surveillance in epidemiology has different kinds of challenges. Discussion paper The model developed in this study might help to make aware the ethical aspects already in the development process, and possibly address them.

Kostkova (2018) [28] United Kingdom Life Sciences, Society and Policy N/A Outline 3 major ethical and governance challenges for digital epidemiology in the 21st century Digital surveillance has created ethical, political, and legal challenges in infectious disease control. Commentary report Some of the ethical challenges of sharing data across various early warning tools to support risk assessment are ownership of personal data, transparency and clarity of public health data sharing, strong transparent disclosure, data privacy and security, and the balance between data sharing, personal data protection, stakeholder needs, and public good.

Vayena et al (2015) [29] Switzerland PLoS Computational Biology N/A Identify key ethical challenges associated with DDD activities and outline a framework for addressing them DDD has many ethical challenges in infectious disease pandemics. Discussion paper The ethical challenges of DDD can be divided under 3 heads: context sensitivity (privacy and contextual integrity, transparency, and global justice); nexus of ethics and methodology (risk of harm, use of resources, trust, transparency, accountability); and legitimacy requirements (shared code of practice, mechanism for quick response to inaccuracies, addressing harms caused by DDD activities, common good).

De Jong et al (2019) [30] Belgium Emerging Infectious Diseases N/A Mitigate the ethical concerns of movement mapping of potentially infected persons Mapping the movements of potentially infected persons has ethical challenges. Discussion paper Ethical obstacles are privacy in relation to the principles of autonomy and nonmaleficence; and a balance between costs, risks, and benefits for participants and communities in relation to the principles of beneficence and justice, such as stigmatized community, data withholding, and whether and how to communicate information on hotspots to the general population.

Kind (2020) [31] United Kingdom

Patterns N/A Examine societal, political, legal and ethical perspectives on symptom tracking, contact tracing, and immunity The UK government asked for more information to decide the use of technology in the COVID-19 pandemic. Rapid evidence review The ethical issues of digital contact tracing are human rights and data protection, inequalities, data quality limitations, false reporting risks, and centralization of large amounts of personal data.

Park et al (2020) [32] Korea JAMA N/A Identify ethical concerns over privacy involving the information technology–based tracing strategy in response to COVID-19 South Korea extensively used digital tools for tracing COVID-19 patients. Discussion paper Privacy controversies might unveil or infer embarrassing personal details, unwanted privacy invasion, public disdain, uneven scope, and granularity of disclosures by municipal and local governments.

Fraser et al (2020) [33] United Kingdom University of Oxford N/A Minimize the invasion of privacy by using digital contact tracing Contact tracing was used to assist people in receiving warnings about COVID-19. Discussion paper The ethical issues include sensitively and specifically identifying infectious individuals, user uptake and adherence, notification, integration with local health policy, and ability to evaluate effectiveness transparently.

Cho et al (2020) [34] Singapore ArXiv Preprint N/A Discuss ways of ameliorating privacy concerns without decreasing the usefulness of contact-tracing apps The Singaporean government released a mobile phone app to assist in tracking down exposures to COVID-19 patients, but there were privacy implications. Discussion paper Privacy is a central feature of conversations around mobile contact-tracking apps. Some privacy trade-offs can be endured for public health.

Klenk et al (2020) [35] Netherlands Ethics and Information Technology N/A Identify factors that pose a risk for fair group composition Digital tracing technologies for COVID-19 control were reported to have ethical risks. Discussion paper Digital tracking apps will introduce new psychological, social, economic, and political risks.

De Montjoye et al (2020) [36] United Kingdom Computational Privacy Group Blog N/A Propose 8 questions to assess privacy in contact-tracing apps. A contact-tracing app was developed to assist with COVID-19 control, and record location or close contact data. Discussion paper Privacy protection should rely on mathematical proof, and mitigation strategies should be considered only when necessary. We should focus on privacy and ensure security.

Bernier et al (2015) [37] Canada University of New Brunswick Law Journal N/A Highlight the personal privacy in electronic public health surveillance systems Data surveillance has become a key component of pandemic response plans. Discussion paper The privacy governance framework is incomplete in ensuring the effective and protective use of personal information in response to epidemics.

Ienca et al (2020) [38] Switzerland Nature Medicine N/A Identify ethical issues when using digital surveillance systems in COVID-19 The COVID-19 emergency has used much more digital tools than previous outbreaks globally. Discussion paper Best practices should be identified to protect privacy and public trust.

Yasaka et al (2020) [39] United States JMIR mHealth and uHealth N/A Develop an effective contact-tracing smartphone app that respects user privacy by not collecting location information or other personal data Smartphone-based contact tracing has been used in the COVID-19 pandemic to limit disease transmission. Discussion paper Users may be uncomfortable with applications that track real-time locations.

Barbieri et al (2020) [40] Italy Istituto Affari Internazionali N/A Discuss the ethics of technological solutions to mitigate COVID-19 Technological solutions to mitigate the COVID-19 crisis have been implemented in China and South Korea. Discussion paper In a pandemic crisis, the balance between privacy and public health tends to tilt toward the latter. However, a strong legal framework should be established around any such data-driven policy, taking into account the transition to “postepidemic” life.

Chan et al (2020) [41] United States arXiv N/A Improve the privacy and anonymity standards of mobile contact tracing The COVID-19 pandemic has been controlled by large-scale adoption of contact tracing. Discussion paper Ethical issues of privacy protection, transparency, and reidentification risks of anonymous information.

Peter (2020) [42] Australia The Guardian N/A Discuss the acceptability of a coronavirus tracing app by Australians and how to implement tracing technology successfully The Australian public is seeking a way to manage the COVID-19 pandemic. Discussion paper The ultimate success of tracking technology will depend on confidence and mutual respect. The ultimate test of any tracking technology will be the strength of the relationship between the public and the government.

aN/A: not applicable.