John Francis

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 the ethical, political, and legal issues underlying difficulties in maintaining adequate surveillance for public health. It argues that public trust is essential to sustain surveillance. For trust to be warranted, publics must be assured that information will be used to promote health equitably. Transparency and oversight are needed to protect individuals against harm and groups against discrimination and stigma. Bringing together expertise from bioethics, law, political science, and public policy, the authors of this volume develop a comprehensive approach to sustaining surveillance in today’s changing, diverse, and unjust world.

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, information gained in research, direct to consumer testing (including genetic testing), smartphones and smartphone apps, wearables and biosensors, and robots and smart devices. It explores the possibilities for bias introduced by the use of artificial intelligence and questions common assumptions about the permissibility of using deidentified data. It also considers how private sector actors such as social media platforms may further public health but have economic interests orthogonal to or in tension with public health. These developments in data use and analysis carry the potential for great benefit but also significant risks of harm. The chapter concludes that regulation is uneven at best and that increased oversight and transparency are imperative to avoid backlash and sustain trust in these novel forms of data use.

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 chapter explores injustice in surveillance and ethical responses. Primary examples are drawn from surveillance of environmental risks, especially those involving unclean or contaminated water. These injustices occur across the globe, from Flint, Michigan, in the United States to refugee camps in Bangladesh. The chapter also takes up the obligations of others when societies are failing to act justly, arguing for the importance of addressing corrosive disadvantages suffered especially by children but by other disadvantaged populations as well.

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 disease spreads widely in a community or is transmitted in ways such as aerolisization that may make it difficult to recognize that contacts have occurred. This chapter considers the ethics of contact tracing, arguing that the method has far too often been associated with moral condemnation of behaviours such as non-marital sex or with stigmatization of groups. The chapter then explores how contact tracing can be combined with treatment and other support to facilitate warranted trust in the use of this traditional surveillance method.

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 population numbers, vital statistics, or reports of disease has been controversial. Information is power and the most rudimentary surveillance can be used both for good and for harm. This chapter sets ethical questions about these basic surveillance methods in historical and epistemological context. It gives examples of uses of data about population numbers, vital statistics, or outbreaks that have been clearly beneficial, as well as examples that have bordered on the genocidal. Counting numbers, as a rudimentary epidemiological method, also presents the opportunity to explore ethical problems raised by epidemiology as a science, such as incomplete data, biased data, or false negatives or positives. Today, with increasing understanding of disease and availability of prevention or treatment, the advantages of outbreak detection may be shared far more widely and more equally. Nonetheless, outbreak detection can generate fear and hostility if patterns of disease track otherwise disfavored groups. COVID-19 has revealed the importance of demographic data about the distribution of disease burdens—data that may either generate mistrust as people see their disadvantage starkly, or that may foster trust if the result is increased attention to disparities in treatment and in 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 the population. Increased rates of conditions such as diabetes or substance use disorders are called “epidemics” to be addressed by public health interventions including education, environmental design, economic incentives, regulation, and even prohibition. This chapter explores the ethics of this so-called “new” public health, arguing that paternalistic interference with behavior is justified only to prevent serious harm. Much information collection, however, aims not to protect individuals but to understand health or health disparities at the population level and thus is not properly regarded as paternalistic. The chapter also argues that interferences such as the requirement to wear masks in a pandemic are mistakenly perceived as protecting individuals against their own choices and are better viewed as protecting others from the possibility of harm.

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? If community consent is required, what constitutes the community and how might it give consent? This chapter explores these difficult questions about consent and communities. It argues that the ethical considerations of respect for persons that lie behind informed consent can be reflected in the roles of public health, groups, communities, and populations in surveillance. Reflecting such respect, however, requires careful attention to the differing ways communities may be defined, in terms of political borders, geography, groups, identities, and interests. It also requires nuanced understanding of the different ways communities develop, interrelate, and function.

This paper argues for an expansion of the suffrage in American local governmental elections significantly beyond what is currently permitted in most local elections in the United States. Two recommendations are proposed: (1) Allowing non-citizen residents to vote in local governmental jurisdictions. (2) Allowing individuals who demonstrably live in two local areal jurisdictions to claim dual residency with local voting rights in both districts. The paper defends these two recommendations by calling attention to the global change in our understanding of citizenship and residency and the implications of these changes to the exercise of the franchise. These changes include the rise of dual citizenship. Citizenship in one state is no longer preclusive of citizenship in another state. A second change is the importance assigned to a single declared and recognized residency within many countries including the United States. A third change is the shifting understanding of the relationship between citizenship and residency and the implications for how we should think about voting rights at home and abroad.

Understanding the intangible harms of privacy violations has proved daunting. Yet it is vitally important to understanding the value of privacy beyond economic harms of privacy loss. This chapter explores how violations of employee privacy affect the dignity of work as a lens for understanding intangible privacy harms. Employee privacy has drawn less attention in recent privacy discussions than informational privacy, even though it is seriously under protected in the U.S. today. Indeed, privacy has largely been linked to employment through the possibility that the information individuals reveal on social media may unwittingly affect their employment prospects and thus cause economic harm. Yet arguments for employee privacy—of information, space, and private lives—also draw on dignity in the sense of protection from vulnerability from loss of important human goods such as the ability to function as a citizen and the need for meaningful work. In this chapter, we explore these dignity-based justifications for employee privacy. We then use this discussion to illuminate when non-consensual uses of information drawn from individuals are particularly troubling with respect to the non-economic harms they may cause.

In the wake of the Dobbs decision withdrawing federal constitutional protection for reproductive rights, the United States is in the throes of federalist conflicts. Some states are enacting draconian prohibitions of abortion or gender-affirming care, whereas other states are attempting to shield providers and their patients seeking care. This article explores standard arguments supporting federalism, including that it allows for cultural differences to remain along with a structure that provides for the advantages of common security and commerce, that it provides a laboratory for confined experiments, that it is government closer to the people and thus more informed about local needs and preferences, and that it creates layers of government that can constrain one another and thus doubly protect rights. We contend that these arguments do not justify significant differences among states with respect to the recognition of important aspects of well-being; significant injustices among subnational units cannot be justified by federalism. However, as nonideal theorists, we also observe that federalism presents the possibility of some states protecting rights that others do not. Assuming that movement among subnational units is protected, those who are fortunate enough to be able to travel will be able to access rights they cannot access at home. Nonetheless, movement may not be readily available to minors, people without documentation, people with disabilities, people who lack economic resources, or people who have responsibilities that preclude travel. Only rights protection at the federal level will suffice in such cases.

Organ trafficking and trafficking in persons for the purpose of organ transplantation are recognized as significant international problems. Yet these forms of trafficking are largely left out of international criminal law regimes and to some extent of domestic criminal law regimes as well. Trafficking of organs or persons for their organs does not come within the jurisdiction of the ICC, except in very special cases such as when conducted in a manner that conforms to the definitions of genocide or crimes against humanity. Although the United States Code characterizes trafficking as a transnational crime with national implications, (22 U.S.C. § 7101(b)(24) (2010)), trafficking is rarely prosecuted in domestic courts. It has thus functioned in practice largely as what might be judged a stateless offense, out of the purview of both international and national courts. Yet these forms of organ trafficking remain widespread—and devastating to those who are its victims. In this article, we begin by describing what is known about the extent of organ trafficking and trafficking in persons for the purpose of removal of organs. We then critically evaluate how and why such trafficking has remained largely unaddressed by both international and domestic criminal law regimes. This state of affairs, we argue, presents a missed chance for developing the legitimacy of international criminal law and an illustration of how far current international legal institutions remain from ideal justice.

Statutes criminalizing behavior that risks transmission of HIV/AIDS exemplify use of the criminal law against individuals who are victims of infectious disease. These statutes, despite their frequency, are misguided in terms of the goals of the criminal law and the public health aim of reducing overall burdens of disease, for at least three important reasons. First, they identify individual offenders for punishment, a paradigm that is misplaced in the most typical contexts of transmission of infectious disease and even for HIV/AIDS, despite claims of AIDS exceptionalism. Second, although there are examples of individuals who transmit infectious disease in a manner that fits the criminal law paradigm of identification of individual offenders for deterrence or retribution, these examples are limited and can be accommodated by existing criminal laws not devoted specifically to infectious disease. Third, and most importantly, the current criminal laws regarding HIV/AIDS, like many other criminal laws applied to infectious disease transmission, have been misguided in focusing on punishment of the diseased individual as a wrongful transmitter. Instead of individual offenders, activities that enhance the scale of disease transmission—behaviors that might be characterized as ‘transmission facilitation’—are a more appropriate target for the criminal law. Examples are trafficking in human beings (including sex trafficking, organ trafficking, and labor trafficking), suppression of information about the emergence of infection in circumstances in which there is a legally established obligation to disclose, and intentional or reckless activities to discourage disease treatment or prevention. Difficulties remain with justifications for criminalizing even these behaviors, however, most importantly the need for trust in reducing overall burdens of disease, problems in identifying individual responsible offenders, and potential misalignment between static criminal law and the changing nature of infectious disease

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.

Privacy is one of our most essential values, but popular understanding of it lags far behind the heat the concept generates. It's easy to understand why. The concept itself has shifted in U.S. law from autonomy, to property, to confidentiality. Further, with a host of cultural differences as to how privacy is understood globally and in different religions, and with nonstop technological advancements, its significance is continually evolving. Leslie P. and John G. Francis draw upon their extensive expertise in law, philosophy, political science, regulatory policy, and bioethics to parse privacy's meaning in the modern age. This book will inform, appease, and alert readers to what is at stake when privacy is breached.