Passive Data Use for Digital Public Health Surveillance in a Post-Pandemic World (Preprint)

UNSTRUCTURED There is a fundamental need to establish the most ethical and effective way of tracking disease in the post-pandemic era. The ubiquity of mobile phones generating passive data (collected without active user participation) has become a tool for tracking disease. Although discussions of pragmatism or economic issues tend to guide public health decisions, ethical issues are the foremost public concern. Thus, officials must look to history and current moral frameworks to avoid past mistakes and ethical pitfalls. Past pandemics demonstrate that the aftermath is the most effective time to make health policy decisions. However, sophisticated analyses of passive data for digital public health surveillance have yet to be attempted, and there is no consensus on the best method to do so. Therefore, four patient-reported areas of concern must be addressed: (1) informed consent (2) privacy, (3) equity, and (4) ownership. Preparations must be undertaken proactively using the lessons fresh in our collective consciousness.

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Passive Data Use for Ethical Digital Public Health Surveillance in a Post-Pandemic World (Preprint)

Journal of Medical Internet Research ◽

10.2196/30524 ◽

2021 ◽

Author(s):

John Kilgallon ◽

Ishaan Ashwini Tewarie ◽

Marike L.D. Broekman ◽

Aakanksha Rana ◽

Timothy R. Smith

Keyword(s):

Public Health ◽

Public Health Surveillance ◽

Data Use ◽

Health Surveillance ◽

Passive Data

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Tuberculosis surveillance and its discontents: the ethical paradox

The International Journal of Tuberculosis and Lung Disease ◽

10.5588/ijtld.17.0844 ◽

2020 ◽

Vol 24 (5) ◽

pp. 9-14

Author(s):

R. Bayer ◽

A. L. Fairchild ◽

M. Zignol ◽

K. G. Castro

Keyword(s):

Public Health ◽

Public Health Surveillance ◽

Ethical Issues ◽

Human Subjects ◽

Public Health Practice ◽

Health Surveillance ◽

World Health ◽

Ethical Review ◽

Health Practice ◽

Health Organization

In June 2017, the World Health Organization issued the Guidelines on Ethical Issues in Public Health Surveillance. Using the frame of public health ethics, the guidance declared that countries have an affirmative duty to undertake surveillance and that the global community had an obligation to support those countries whose resources limited their capacity. The centrality of TB surveillance has long been recognized as a matter of public health practice and ethics. Nevertheless, contemporary global realities make clear that TB surveillance falls far short of the goal of uniform notification. It is this reality that necessitated the paradoxical turn to research studies that require informed consent and human subjects' ethical review, the very burdens that mandated notification were designed to overcome.

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Participatory Disease Surveillance Systems: Ethical Framework (Preprint)

10.2196/preprints.12273 ◽

2018 ◽

Author(s):

Lester Darryl Geneviève ◽

Andrea Martani ◽

Tenzin Wangmo ◽

Daniela Paolotti ◽

Carl Koppeschaar ◽

...

Keyword(s):

Public Health ◽

Research Ethics ◽

Public Health Surveillance ◽

Ethical Issues ◽

Well Being ◽

Health Surveillance ◽

Ethical Framework ◽

Surveillance Systems ◽

Ethical Challenges ◽

Participatory Surveillance

UNSTRUCTURED Advances in information technology are changing public health at an unprecedented rate. Participatory surveillance systems are contributing to public health by actively engaging digital (eg, Web-based) communities of volunteer citizens to report symptoms and other pertinent information on public health threats and also by empowering individuals to promptly respond to them. However, this digital model raises ethical issues on top of those inherent in traditional forms of public health surveillance. Research ethics are undergoing significant changes in the digital era where not only participants’ physical and psychological well-being but also the protection of their sensitive data have to be considered. In this paper, the digital platform of Influenzanet is used as a case study to illustrate those ethical challenges posed to participatory surveillance systems using digital platforms and mobile apps. These ethical challenges include the implementation of electronic consent, the protection of participants’ privacy, the promotion of justice, and the need for interdisciplinary capacity building of research ethics committees. On the basis of our analysis, we propose a framework to regulate and strengthen ethical approaches in the field of digital public health surveillance.

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Ethical Issues in Using Twitter for Public Health Surveillance and Research: Developing a Taxonomy of Ethical Concepts From the Research Literature

Journal of Medical Internet Research ◽

10.2196/jmir.3617 ◽

2014 ◽

Vol 16 (12) ◽

pp. e290 ◽

Cited By ~ 37

Author(s):

Mike Conway

Keyword(s):

Public Health ◽

Public Health Surveillance ◽

Ethical Issues ◽

Research Literature ◽

Health Surveillance

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H5N1 planning concerns for local governments

Journal of Emergency Management ◽

10.5055/jem.2009.0088 ◽

2009 ◽

Vol 7 (1) ◽

pp. 65 ◽

Cited By ~ 1

Author(s):

Robert O. Schneider, PhD

Keyword(s):

Public Health ◽

Public Education ◽

Local Governments ◽

Public Health Surveillance ◽

Ethical Issues ◽

Influenza Pandemic ◽

Local Communities ◽

Health Surveillance ◽

Pandemic Preparedness ◽

Preparedness Planning

The objectives of this essay are two-fold. First, it will review the very real threat an avian influenza pandemic poses to local communities. Second, it will identify several unaddressed but critical concerns that require the attention of local governments as they refine their pandemic preparedness planning. It is concluded that greater coordination with the private sector, improved public health surveillance efforts, planning for public education, and greater attention to ethical issues are essential concerns that should be on the agenda of local governments as they proceed with their preparations.

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