Sustaining Surveillance: The Importance of Information for Public Health

Springer Verlag (2021)
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Abstract

This book presents a comprehensive theory of the ethics and political philosophy of public health surveillance based on reciprocal obligations among surveillers, those under surveillance, and others potentially affected by surveillance practices. Public health surveillance aims to identify emerging health trends, population health trends, treatment efficacy, and methods of health promotion--all apparently laudatory goals. Nonetheless, as with anti-terrorism surveillance, public health surveillance raises complex questions about privacy, political liberty, and justice both of and in data use. Individuals and groups can be chilled in their personal lives, stigmatized or threatened, and used for the benefit of others when health information is wrongfully collected or used. Transparency and openness about data use, public involvement in decisions, and just distribution of the benefits of surveillance are core elements in the justification of surveillance practices. Understanding health surveillance practices, the concerns it raises, and how to respond to them is critical not only to ethical and trustworthy but also to publicly acceptable and ultimately sustainable surveillance practices. The book is of interest to scholars and practitioners of the ethics and politics of public health, bioethics, privacy and data technology, and health policy. These issues are ever more pressing in pandemic times, where misinformation can travel quickly and suspicions about disease spread, treatment efficacy, and vaccine safety can have devastating public health effects.

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Chapters

Surveillance for the “New” Public Health

Traditional forms of surveillance addressed detecting outbreaks of dangerous contagious disease, case finding and contact tracing, and identifying environmental hazards. But public health today goes far beyond interpersonal contagion and environmental dangers to address patterns of ill health among ... see more

Introduction: Why Surveillance Matters

In the winter and early spring of 2020, COVID-19 stunned the world. Across the globe, public health was slow to respond. Failures of surveillance—of gathering, understanding, and sharing information—drew part of the blame. These lapses were real and could have been anticipated. This volume addresses... see more

Surveillance and Equity: Identifying Hazards in the Environment

Injustice in surveillance may occur if surveillance is directed towards protecting the health of some but the data are gathered at the expense of others. Failures to surveille may be unjust if they leave people subject to health inequities. Such injustice in surveillance may undermine trust. This ch... see more

Conclusion

In this conclusion, we return to the ubiquity and critical need for surveillance to identify disease, reveal health inequities, and further health overall. Yet public trust in surveillance is fragile. Sustaining surveillance requires ethical science, transparency, respect for difference, and justice... see more

Enhancing Surveillance: New Data, New Technologies, and New Actors

New data are being used and new actors are engaging in surveillance by, for, and about public health. This chapter surveys many of these developments: interoperable electronic health records, retained blood spots from newborn screening, biobanks and other genetic databases. patient registries, infor... see more

Case Identification and Contact Tracing

Identifying cases of contagious disease and following any chains of transmission from them is a mainstay of public health efforts to stop disease spread. This method of surveillance is ineffective, however, if people cannot be found or refuse to reveal contacts. It also declines in efficacy as disea... see more

Public Health, Communities and Consent

What is or should be the role of consent in public health? Should the role of consent be different if the public health action involves surveillance rather than efforts to change behavior to improve health? Should either individual or community consent be required for the exercise of surveillance? I... see more

Counting Numbers

Surveillance began with counting the numbers of people in the population. At various times in history, numbers have been used to assess the overall strength of the population, to identify the march of dangerous contagion, or to determine needs for food or labor. But even simple counting of populatio... see more

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