Surveillance plays a crucial role in public health, and for obvious reasons conflicts with individual privacy. This paper argues that the predominant approach to the conflict is problematic, and then offers an alternative. It outlines a Basic Interests Approach to public health measures, and the Unreasonable Exercise Argument, which sets forth conditions under which individuals may justifiably exercise individual privacy claims that conflict with public health goals. The view articulated is compatible with a (...) broad range conceptions of the value of health. (shrink)

Federal, state, and local laws shape the use of health information for public health purposes, such as the mandated collection of data through electronic disease reporting systems. Health professionals can leverage these data to better anticipate and plan for the needs of communities, which is seen in the use of electronic case reporting.

Volume 20, Issue 10, October 2020, Page 61-63.

Background Bioethical debates about privacy, big data, and public health surveillance have not sufficiently engaged the perspectives of those being surveilled. The data justice framework suggests that big data applications have the potential to create disproportionate harm for socially marginalized groups. Using examples from our research on HIV surveillance for individuals incarcerated in jails, we analyze ethical issues in deploying big data in public health surveillance. -/- Methods We conducted qualitative, semi-structured interviews with (...) 24 people living with HIV who had been previously incarcerated in county jails about their perspectives on and experiences with HIV surveillance, as part of a larger study to characterize ethical considerations in leveraging big data techniques to enhance continuity of care for incarcerated people living with HIV. -/- Results Most participants expressed support for the state health department tracking HIV testing results and viral load data. Several viewed HIV surveillance as a violation of privacy, and several had actively avoided contact from state public health outreach workers. Participants were most likely to express reservations about surveillance when they viewed the state’s motives as self-interested. Perspectives highlight the mistrust that structurally vulnerable people may have in the state’s capacity to act as an agent of welfare. Findings suggest that adopting a nuanced, context-sensitive view on surveillance is essential. -/- Conclusions Establishing trustworthiness through interpersonal interactions with public health personnel is important to reversing historical legacies of harm to racial minorities and structurally vulnerable groups. Empowering stakeholders to participate in the design and implementation of data infrastructure and governance is critical for advancing a data justice agenda, and can offset privacy concerns. The next steps in advancing the data justice framework in public health surveillance will be to innovate ways to represent the voices of structurally vulnerable groups in the design and governance of big data initiatives. (shrink)

ABSTRACT Data from digital technologies are increasingly integrated in public health research. In April of 2020, we interviewed a subset of participants who completed a survey approximately one month earlier. Using the survey, we contacted and interviewed participants who had expressed their willingness or unwillingness to share digital data for use in public health. We followed a directed content analysis approach for the analysis of the interview data. Among participants who had reported being unwilling to share (...) data, concerns about privacy, confidentiality, and the purpose of the research were cited. During the interviews, 76.9% of the participants who had who had previously indicated that they were unwilling to share their data, expressed willingness to share data in order to assist with COVID-19 prevention. Our results contribute to our understanding of people’s perspectives on sharing personal data and of the way their perspectives can vary as a function of potential uses of their personal information. (shrink)

The public health measures implemented in response to the COVID-19 pandemic have resulted in a substantially increased shared reliance on private infrastructure and digital services in areas such as healthcare, education, retail, and the workplace. This development has (i) granted a number of private actors significant (informational) power, and (ii) given rise to a range of digital surveillance practices incidental to the pandemic itself. In this paper, we reflect on these secondary consequences of the pandemic and observe (...) that, even though collateral data disclosure and additional activity monitoring appears to have been generally socially accepted as inevitable consequences of the pandemic, part and parcel of a larger conglomeration of emergency compromises, these increased surveillance practices were not directly justified by appeals to solidarity and public health in the same way that the instigating public health measures were. Based on this observation, and given the increased reliance on private actors for maintaining the digital space, we argue that governments have a duty to (i) seek and ensure that there are justifications for collateral data disclosure and activity monitoring by private actors in the context of (future) public health emergencies like the COVID-19 pandemic, and (ii) regulate and provide accountability mechanisms for and oversight over these private surveillance practices on par with governmental essential services that engage in surveillance activities. (shrink)

Alice considered [the idea of un-birthday presents] a little. “I llke birthday presents best,” she said at last.“You don’t know what you’re talking about!” cried Humpty Dumpty. … “[There are three hundred and sixty-four days when you might get un-birthday presents… And only one for birthday presents, you know. There’s a ‘glory’ for you!”“I don’t know what you mean by ‘glory,’” Alice said.Humpty Dumpty smiled contemptuously. “Of course you don’t—till I tell you. I meant ‘there’s a nice knock-down argument for (...) you!’”“But ‘glory’ doesn’t mean ‘a nice knock-down argument,’” Alice objected.“When I use a word,” Humpty Dumpty said in a rather scornful tone, “it means just what I choose it to mean—neither more nor less.”. (shrink)

Components of artificial intelligence (AI) for analysing social big data, such as natural language processing (NLP) algorithms, have improved the timeliness and robustness of health data. NLP techniques have been implemented to analyse large volumes of text from social media platforms to gain insights on disease symptoms, understand barriers to care and predict disease outbreaks. However, AI-based decisions may contain biases that could misrepresent populations, skew results or lead to errors. Bias, within the scope of this paper, is described (...) as the difference between the predictive values and true values within the modelling of an algorithm. Bias within algorithms may lead to inaccurate healthcare outcomes and exacerbate health disparities when results derived from these biased algorithms are applied to health interventions. Researchers who implement these algorithms must consider when and how bias may arise. This paper explores algorithmic biases as a result of data collection, labelling and modelling of NLP algorithms. Researchers have a role in ensuring that efforts towards combating bias are enforced, especially when drawing health conclusions derived from social media posts that are linguistically diverse. Through the implementation of open collaboration, auditing processes and the development of guidelines, researchers may be able to reduce bias and improve NLP algorithms that improve health surveillance. (shrink)

The Centers for Disease Control and Prevention’s goal is to develop a surveillance system of public health laws that would both support research and analysis among policymakers and legislators, and support the scientific basis for public health law. This session was convened, in part, to discuss the value of creating an electronic system to track public health legal information. Public health surveillance is the “ongoing, systematic collection, analysis, interpretation, and dissemination (...) of data regarding a health-related event for use in public health action to reduce morbidity and mortality and to improve health. Data disseminated by a public health surveillance system can be used for immediate public health action, program planning and evaluation, and formulating research hypotheses.” There is currently no system available that meets the goals of this definition of “surveillance” for public health laws. (shrink)

The Centers for Disease Control and Prevention’s goal is to develop a surveillance system of public health laws that would both support research and analysis among policymakers and legislators, and support the scientific basis for public health law. This session was convened, in part, to discuss the value of creating an electronic system to track public health legal information. Public health surveillance is the “ongoing, systematic collection, analysis, interpretation, and dissemination (...) of data regarding a health-related event for use in public health action to reduce morbidity and mortality and to improve health. Data disseminated by a public health surveillance system can be used for immediate public health action, program planning and evaluation, and formulating research hypotheses.” There is currently no system available that meets the goals of this definition of “surveillance” for public health laws. (shrink)

Surveillance in public health is the means by which people who are responsible for preventing or controlling threats to health get the timely, ongoing, and reliable information they need about the occurrence, antecedents, time course, geographic spread, consequences, and nature of these threats among the populations they serve. “Policy surveillance” is the ongoing, systematic collection, analysis, and dissemination of information about laws and other policies of health importance.

Surveillance serves as the eyes of public health. It has provided the foundation for planning, intervention, and disease prevention and has been critical for epidemiology research into patterns of morbidity and mortality for a wide variety of disease and conditions. Registries have been essential for tracking individuals and their conditions over time. Surveillance has also served to trigger the imposition of public health control measures, such as contact tracing, mandatory treatment, and quarantine. The threat (...) of such intervention and long-term monitoring has provoked alarm and rendered surveillance suspect for those concerned about the unwarranted exercise of state authority in the name of public health. Thus the history of surveillance has been bounded by promise of disease control and a specter of intrusion. In this article we address the tension between the public's need for knowledge as a foundation for rational policy-making and the centrality of norms of privacy for democratic societies. (shrink)

Alice considered [the idea of un-birthday presents] a little. “I llke birthday presents best,” she said at last.“You don’t know what you’re talking about!” cried Humpty Dumpty. … “[There are three hundred and sixty-four days when you might get un-birthday presents… And only one for birthday presents, you know. There’s a ‘glory’ for you!”“I don’t know what you mean by ‘glory,’” Alice said.Humpty Dumpty smiled contemptuously. “Of course you don’t—till I tell you. I meant ‘there’s a nice knock-down argument for (...) you!’”“But ‘glory’ doesn’t mean ‘a nice knock-down argument,’” Alice objected.“When I use a word,” Humpty Dumpty said in a rather scornful tone, “it means just what I choose it to mean—neither more nor less.”. (shrink)

Surveillance serves as the eyes of public health. It has provided the foundation for planning, intervention, and disease prevention and has been critical for epidemiology research into patterns of morbidity and mortality for a wide variety of disease and conditions. Registries have been essential for tracking individuals and their conditions over time. Surveillance has also served to trigger the imposition of public health control measures, such as contact tracing, mandatory treatment, and quarantine. The threat (...) of such intervention and long-term monitoring has provoked alarm and rendered surveillance suspect for those concerned about the unwarranted exercise of state authority in the name of public health. Thus the history of surveillance has been bounded by promise of disease control and a specter of intrusion. In this article we address the tension between the public's need for knowledge as a foundation for rational policy-making and the centrality of norms of privacy for democratic societies. (shrink)

The COVID‐19 pandemic has infected millions around the world. Governments initially responded by requiring businesses to close and citizens to self‐isolate, as well as funding vaccine research and implementing a range of technologies to monitor and limit the spread of the disease. This article considers the use of smartphone metadata and Bluetooth applications for public health surveillance purposes in relation to COVID‐19. It undertakes ethical analysis of these measures, particularly in relation to collective moral responsibility, considering whether (...) citizens ought, or should be compelled, to comply with government measures. (shrink)

Public health ethics, like the field of public health it addresses, traditionally has focused more on practice and particular cases than on theory, with the result that some concepts, methods, and boundaries remain largely undefined. This paper attempts to provide a rough conceptual map of the terrain of public health ethics. We begin by briefly defining public health and identifying general features of the field that are particularly relevant for a discussion of (...) public health ethics.Public health is primarily concerned with the health of the entire population, rather than the health of individuals. Its features include an emphasis on the promotion of health and the prevention of disease and disability; the collection and use of epidemiological data, population surveillance, and other forms of empirical quantitative assessment; a recognition of the multidimensional nature of the determinants of health; and a focus on the complex interactions of many factors—biological, behavioral, social, and environmental—in developing effective interventions. (shrink)

There is an ongoing increase in the use of mobile health technologies that patients can use to monitor health-related outcomes and behaviours. While the dominant narrative around mHealth focuses on patient empowerment, there is potential for mHealth to fit into a growing push for patients to take personal responsibility for their health. I call the first of these uses ‘medical monitoring’, and the second ‘personal health surveillance’. After outlining two problems which the use of mHealth (...) might seem to enable us to overcome—fairness of burdens and reliance on self-reporting—I note that these problems would only really be solved by unacceptably comprehensive forms of personal health surveillance which applies to all of us at all times. A more plausible model is to use personal health surveillance as a last resort for patients who would otherwise independently qualify for responsibility-based penalties. However, I note that there are still a number of ethical and practical problems that such a policy would need to overcome. The prospects of mHealth enabling a fair, genuinely cost-saving policy of patient responsibility are slim. (shrink)

Volume 20, Issue 10, October 2020, Page 39-41.

The generation of evidence is integral to the work of public health and health service providers. Traditionally, ethics has been addressed differently in research projects, compared with other forms of evidence generation, such as quality improvement, program evaluation, and surveillance, with review of non-research activities falling outside the purview of the research ethics board. However, the boundaries between research and these other evaluative activities are not distinct. Efforts to delineate a boundary – whether on grounds of (...) primary purpose, temporality, underlying legal authority, departure from usual practice, or direct benefits to participants – have been unsatisfactory. (shrink)

For the first time, the revised Common Rule specifies that public health surveillance activities are not research. This article reviews the historical development of the public health surveillance exclusion and implications for other foundational public health practices.

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. (shrink)

This paper explores the consequences of the oft ignored fact that public health insurance must actually be supplied by the state. Depending how the state is modeled, different health insurance outcomes are expected. The benevolent model of the state does not account for many actual features of public health insurance systems. One alternative is to use a standard public choice model, where state action is determined by interaction between self-interested actors. Another alternative—related to a (...) strand in public choice theory—is to model the state as Leviathan. Interestingly, some proponents of public health insurance use an implicit Leviathan model, but not consistently. The Leviathan model of the state explains many features of public health insurance: its uncontrolled growth, its tendency toward monopoly, its capacity to buy trust and loyalty from the common people, its surveillance ability, its controlling nature, and even the persistence of its inefficiencies and waiting lines. (shrink)

One of the largest, oldest, and most interesting challenges in health care is the balancing act in which clinicians have generally uncontroversial duties both to individual patients and to communities. Physicians and nurses must — so we teach them — put patients first, and at the same time recognize that individuals are members of communities. Individuals affect the health of communities, and communities affect the health of individuals. Thus, the moral and professional duties that result are sometimes (...) in conflict.Moreover, the traditional, prosaic clinical encounter is evolving in an environment increasingly shaped by electronic health records, personal health records, pharmacogenomics and vast networks of data collection and storage for public health surveillance, human subjects research, health services evaluation, and comparative effectiveness research. Health information technology is changing everything. It would be perverse otherwise: imagine large amounts of data and information either ignored, missed, or collected and then ignored. (shrink)

Introduction : a framework for public health ethics -- Moral considerations : bases and limits for public health -- The political and legal context of public health ethics -- Public health perspectives -- Surveillance and public health data : the foundation and eyes of public health -- Case finding : screening, testing, and tracing -- Immunization : protection through vaccination -- Containing communicable diseases : personal control measures (...) -- Health communication -- Public health and the environment. (shrink)

Recent advances in our understanding of the human genome have raised high hopes for the creation of personalized medicine able to predict diseases well before they occur, or that will lead to individualized and therefore more effective treatments. This possibility of a more accurate science of the prevention and surveillance of disease also illuminates the field of public health, where the translation of genomic knowledge could provide tools enhancing the capacity of public health authorities to (...) promote health and prevent diseases. But beyond scientific considerations, the use of genomics in public health research and interventions gives rise to several ethical and social issues of great importance. Considering the impact that PHG could have on the future of public health while still paying attention to the uncertainty surrounding the use of genomic databases for the benefit of populations, this article seeks to explore the promise of genomics in public health and the ethical issues that emerge from its application. (shrink)

The paper ‘Biodefence and the production of knowledge’ by Buchanan and Kelley1 is an extremely valuable addition to the scientific and bioterrorism defence literature. It points out the myriad of ways that the structure of current debates about the dual use problem neglects important values, and discussions of how these values should be considered in policy making. In this commentary, I will focus on only one of these areas: what the authors characterise as ‘dual use opportunity’. My goal is not (...) to challenge the authors’ main points , but to draw out the complicated set of value conflicts that this single area of bioterror defence policy has neglected.Buchanan and Kelley characterise the concept of ‘dual use opportunity’ as the idea that ‘research undertaken for biodefence may contribute, or might be made to contribute, to the alleviation of the burden of disease among the world's worst-off people.’ I have argued for a similar idea of dual use opportunity in a different context by suggesting that we should prioritise global public health infrastructure over narrowly defined research on specific agents and/or projects that seek to prevent altogether biological attacks—a goal that, I have argued, is futile given the almost limitless number of forms of, and mutations to, disease bacteria and viruses that might be employed by biological terrorists.2–5 Effective control of an epidemic requires a fundamental infrastructure of surveillance and reporting. Because the …. (shrink)

Increasingly widespread adoption of health information technology tools in clinical care increases interest in ethical and legal issues related to the use of these tools for public health and the effects of these uses on the clinician-patient relationship. It is argued that patients, clinicians, and society have generally uncontroversial duties to support civil society's public health mission, information technology supports this mission, and the effects of automated and computerized public health surveillance are (...) likely to have little if any effect on the clinician-patient relationship. It is also suggested, nevertheless, that electronic public health surveillance raises interesting and important ethical issues, some of which can be addressed if not resolved by empirical research, especially regarding patient preferences about secondary use of health data and their moral obligation to contribute to population- based health. (shrink)

Web scraping involves using computer programs for automated extraction and organization of data from the Web for the purpose of further data analysis and use. It is frequently used by commercial companies, but also has become a valuable tool in epidemiological research and public health planning. In this paper, we explore ethical issues in a project that “scrapes” public websites of U.S. county jails as part of an effort to develop a comprehensive database to enhance HIV (...) class='Hi'>surveillance and improve continuity of care for incarcerated populations. We argue that the well-known framework of Emanuel et al. provides only partial ethical guidance for the activities we describe, which lie at a complex intersection of public health research and public health practice. We suggest some ethical considerations from the ethics of public health practice to help fill gaps in this relatively unexplored area. (shrink)

Immunization plays a crucial role in global health security, preventing public health emergencies of international concern and protecting individuals from infectious disease outbreaks, yet these critical public health benefits are dependent on immunization law. Where public health law has become central to preventing, detecting, and responding to infectious disease, public health law reform is seen as necessary to implement the Global Health Security Agenda. This article examines national immunization laws as (...) a basis to implement the GHSA and promote the public's health, analyzing the scope and content of these laws to prevent infectious disease across Sub-Saharan Africa. Undertaking policy surveillance of national immunization laws in 20 Sub-Saharan African countries, this study: developed a legal framework to map the legal attributes relevant to immunization; created an assessment tool to determine the presence of these attributes under national immunization law; and applied this assessment tool to code national legal landscapes. An analysis of these coded laws highlights legal attributes that govern vaccine requirements, supply chains, vaccine administration standards, and medicines quality and manufacturer liability. Based upon this international policy surveillance, it will be crucial to undertake legal epidemiology research across countries, examining the influence of immunization law on vaccination rates and disease outbreaks. (shrink)

The accelerating adoption of electronic health record systems will have profound impacts on clinical care. It will also have far-reaching implications for public health research and surveillance, which in turn could lead to changes in public policy, statutes, and regulations. The public health benefits of EHR use can be significant. However, researchers and analysts who rely on EHR data must proceed with caution and understand the potential limitations of EHRs.Much has been written about (...) the risk of EHR privacy breaches. This paper focuses on a different set of concerns, those relating to data quality. Unlike clinical trial data, EHR data is not recorded primarily to meet the needs of researchers. Because of clinicians’ workloads, poor user-interface design, and other factors, EHR data is surprisingly likely to be erroneous, miscoded, fragmented, and incomplete. Although EHRs eliminate the problem of cryptic handwriting, other kinds of errors are more common with EHRs than with paper records. (shrink)

Volume 20, Issue 10, October 2020, Page 79-81.

Existing ethics guidelines, influential literature and policies on ethical research generally focus on real-time data collection from humans. They enforce individual rights and liberties, thereby lowering need for aggregate protections. Although dependable, emerging public health research paradigms like research using public health data raise new challenges to their application. Unlike traditional research, RUPD is population-based, aligned to public health activities, and often reliant on pre-collected longitudinal data. These characteristics, when considered in relation to the (...) generally lower protective ethico-legal frameworks of the Global South, including Africa, highlight ethical gaps. Health and demographic surveillance systems are examples of public health programs that accommodate RUPD in these contexts. We set out to explore the perspectives of professionals with a working knowledge of these systems to determine practical ways of appropriating the foundational principles of health research to advance the ever growing opportunities in RUPD. We present their perspectives and in relation to the literature and our ethical analysis, make context relevant recommendations. We further argue for the development of a framework founded on the discussions and recommendations as a minimum base for achieving optimal ethics for optimal RUPD in the Global South. (shrink)

Over the last two decades in the United States, public health practitioners, policy makers, and researchers have charted new tenitory by increasingly using public health strategies to understand and prevent youth violence, which has been considered a criminal justice problem. The utilization of public health approaches has generated several contributions to the understanding and prevention of violence, including new and expanded knowledge in surveillance, delineation of risk factors, and prop design, including implementation and (...) evaluation strategies.While public health activities generally complement those of criminal justice, confrontations, challenges and turf issues within this cross-disciplinary enterprise remain inevitable. Continued progress is dependent upon expanded efforts and greater collaboration within both disciplines. (shrink)

Over the last two decades in the United States, public health practitioners, policy makers, and researchers have charted new tenitory by increasingly using public health strategies to understand and prevent youth violence, which has been considered a criminal justice problem. The utilization of public health approaches has generated several contributions to the understanding and prevention of violence, including new and expanded knowledge in surveillance, delineation of risk factors, and prop design, including implementation and (...) evaluation strategies.While public health activities generally complement those of criminal justice, confrontations, challenges and turf issues within this cross-disciplinary enterprise remain inevitable. Continued progress is dependent upon expanded efforts and greater collaboration within both disciplines. (shrink)

The Health Protection Agency has recently attempted to create a postmortem tissue archive to determine the prevalence of abnormal prion protein. The success of this archive was prevented because the Health Protection Agency could not convince coroners to support the study’s methodology and participate on that basis. The findings of this paper detail and support the view that the Coroners’ Society of England and Wales’s refusal to participate was misguided and failed to appreciate that coroners have a moral (...) obligation to protect public health. Measures to assist coroners in fulfilling this role are proposed. (shrink)

This chapter provides a high-level overview of key ethical issues raised by the use of surveillance technologies, such as digital contact tracing, disease surveillance, and vaccine passports, to combat the COVID-19 pandemic. To some extent, these issues are entirely familiar. I argue that they raise old questions in new form and with new urgency, at the intersection of information ethics, research ethics, and public health. Whenever we deal with data-driven technologies, we have to ask how they (...) fare in relation to important values like privacy, fairness, transparency, and accountability—values emphasized by information ethics scholars. Likewise, when such technologies put individuals at risk in order to drive scientific research and knowledge construction, we have to ask how they implicate values such as autonomy, beneficence and non-maleficence, and justice—values central to research ethics. And as researchers focusing on health information have long argued, when the data collected by these technologies pertain to individuals and public health, these ethical issues take on a special cast. -/- It is also true, however, that the pandemic has placed these questions in a new and revealing light. I highlight three insights from information ethics and research ethics that can help us navigate this difficult terrain. First, the value of privacy is instrumental, not absolute—there is nothing wrong with asking how to balance privacy against other important values. Second, privacy has both individual and social importance. Weighing privacy, on one hand, and public health, on the other, is not, therefore, a contest between individual and collective interests. Rather, it is an attempt to balance disparate public goods. Third, we ought to put these kinds of ethical decisions in the hands of third parties, rather than leaving them up to those who directly stand to benefit from them. In the case of pandemic surveillance technologies, this should mean more public, democratic oversight. (shrink)

Even as public health ethics was developing as a field, major incidents such as 9/11 and the SARS epidemic propelled discourse around public health emergency preparedness and response. Policy and practice shifted to a multidisciplinary approach, recognizing the broad range of potential threats to public health, including biological, physical, radiological, and chemical threats. This propelled the development of surveillance systems to detect incidents, laboratory capacities to rapidly test for potential threats, and therapeutic and (...) social countermeasures to prepare for and respond to a range of hazards. In bringing public health ethics and emergency preparedness together, Emergency Ethics: Public Health Preparedness and Response adds depth and complexity to both fields. As global threats continue to emerge, the book, edited by Bruce Jennings, John D. Arras, Drue H. Barrett, and Barbara A. Ellis, will offer a vital compass. (shrink)

Data-sharing is a desired default in the field of public health and a source of much ethical deliberation. Sharing data potentially contributes the largest, most efficient source of scientific data, but is fraught with contextual challenges which make stakeholders, particularly those in under-resourced contexts hesitant or slow to share. Relatively little empirical research has engaged stakeholders in discussing the issue. This study sought to explore relevant experiences, contextual, and subjective explanations around the topic to provide a rich and (...) detailed presentation of what it means to different stakeholders and contexts to share data and how that can guide practice and ethical guidance. A qualitative design involving interviews was undertaken with professionals working in public health institutions endowed with data, ethics committees, and advisory agencies which help shape health research in Africa. A descriptive form of thematic analysis was used to summarize results into six key themes: The role of HDSSs in research using public health data and data-sharing; Ownership and funding are critical factors influencing data-sharing; Other factors discourage data-sharing; Promoting and sustaining data-sharing; Ethical guidance structures; and Establishing effective guidance. The themes reveal factors regarding the willingness or not to share and an intricate ethical system that current discourse could reflect. Many of the concerns resonate with the literature, but a whole other gamut of people and process issues; commitments, investments, careers, and the right ethical guidance are needed to realize a sustainable goal of reaching ‘share’ as a default. (shrink)

What are the Differences between Public Health Practice and Research? This perplexing question constantly arises in the planning and performance of public health activities involving the acquisition and use of identifiable health information. Public health agencies collect and analyze significant identifiable health data from health care providers, insurers, other agencies, or individuals to perform an array of public health activities. These activities include surveillance, epidemiological investigations, and evaluation and (...) monitoring. Few debate that these essential public health activities, often specifically authorized by law, are classifiable as public health practice.Other public health activities in which identifiable health data are acquired or used, however, can resemble, include, or constitute human subjects research. “Human subjects research” is legally defined as “a systematic investigation, including research development, testing, and evaluation, designed to develop or contribute to generalizable knowledge” that involves living human subjects. (shrink)

What are the Differences between Public Health Practice and Research? This perplexing question constantly arises in the planning and performance of public health activities involving the acquisition and use of identifiable health information. Public health agencies collect and analyze significant identifiable health data from health care providers, insurers, other agencies, or individuals to perform an array of public health activities. These activities include surveillance, epidemiological investigations, and evaluation and (...) monitoring. Few debate that these essential public health activities, often specifically authorized by law, are classifiable as public health practice.Other public health activities in which identifiable health data are acquired or used, however, can resemble, include, or constitute human subjects research. “Human subjects research” is legally defined as “a systematic investigation, including research development, testing, and evaluation, designed to develop or contribute to generalizable knowledge” that involves living human subjects. (shrink)

Incidence and prevalence rates of dengue have increased over the years, and the disease is quickly becoming cause for concern within the public health community. Globally, 128 countries and slightly under four billion people are at risk of contracting dengue. In Sri Lanka, more than half of dengue cases originate in Colombo, which in previous years, used a manual pen-and-paper data management system, which meant that it was not possible to obtain or provide up-to-date information about the severity (...) and spread of dengue. In 2015, two versions of a mobile application called Mo-Buzz Dengue were developed and launched in Colombo, Sri Lanka in order to overcome the challenges of the traditional management system by capitalizing on the rising affordability and ubiquity of mobile phone technology. To keep up with the dynamic nature of disease outbreaks, real-time data need to be visualized in a manner which facilitates discerning and comprehending these patterns. Hence, we used health maps in Mo-Buzz to effectively present this information. The first version of Mo-Buzz was for public health inspectors, digitized data management as well as provided educational materials. The second version of Mo-Buzz was a source of information for the general public, a crowdsourcing platform to provide information relating to dengue transmission, and for health authorities to alert users to dengue-specific developments in their area. This paper illustrates the design considerations of the Mo-Buzz disease surveillance system for the general public. A draft scaled-down version of the PHI system was used to obtain feedback and make incremental design enhancements. Additionally, similar health maps were evaluated in terms of capability and usability. These findings were applied to identify future enhancements to the health map of Mo-Buzz Dengue. (shrink)

Obesity is the definitive epidemic of the modern era in the United States. Its well-documented public health impacts, especially related to children and adolescents, are horrific. Nearly one-third of American minors are overweight; over 50% of them are obese. Already, these kids suffer from multiple adverse physical and mental health conditions. Sadly, absent serious communal and individual interventions, their lives may be cut short compared to their own parents’ life expectancy. While recent surveillance suggests childhood obesity (...) may be trending down slightly in some populations, public health experts remain concerned about the threat obesity poses to the health of America's youth.The concurrent travesty underlying childhood obesity is the relative societal failure to slow and reverse its spread. (shrink)

Obesity is the definitive epidemic of the modern era in the United States. Its well-documented public health impacts, especially related to children and adolescents, are horrific. Nearly one-third of American minors are overweight; over 50% of them are obese. Already, these kids suffer from multiple adverse physical and mental health conditions. Sadly, absent serious communal and individual interventions, their lives may be cut short compared to their own parents’ life expectancy. While recent surveillance suggests childhood obesity (...) may be trending down slightly in some populations, public health experts remain concerned about the threat obesity poses to the health of America's youth.The concurrent travesty underlying childhood obesity is the relative societal failure to slow and reverse its spread. (shrink)

In this issue of the JME, age-old questions around how to balance the interests of mother and fetus are revisited in two separate contexts: alcohol consumption during pregnancy, and maternal request caesarean sections. Both have been the subject of recent controversy in the UK, with March 2022 seeing the introduction of new National Institute for Clinical Excellence Quality Standards on combatting foetal alcohol spectrum disorder 1; and the publication of the long-awaited Ockenden Review into a series of failures in NHS (...) maternity care.2 Both raise important questions about the role of healthcare professionals in policing women’s choices during pregnancy and childbirth, and of the importance of deference to and trust in those choices. In this issue’s Feature Article, Rebecca Bennett and Catherine Bowden explore recent proposals to enhance the screening of pregnant women in order to prevent instances of fetal alcohol spectrum disorder through more accurately determining the true prevalence of alcohol consumption during pregnancy.3 Public Health England has suggested research into tools such as blood biomarkers and meconium testing,4 which could better identify those women who are consuming alcohol ‘covertly’ and so make FASD diagnoses more straightforward. As Bennett and Bowden rightly suggest, such a move is unlikely to realise the kind of public health or welfare gains which would justify this level of interference with the women’s autonomy, and may even result in more harm through discouraging engagement with antenatal care. However even absent these very intrusive methods of surveillance, the precautionary principle which underpins such policies — namely that in the absence of evidence that any alcohol is safe, women should be instructed to avoid it altogether — is itself difficult to justify. The evidence on alcohol consumption during pregnancy is mixed. While it is widely accepted that heavy …. (shrink)

Drug‐resistant bacterial infections constitute a major threat to global public health. Several key bacteria that are becoming increasingly resistant are among those that are ubiquitously carried by human beings and usually cause no symptoms (i.e. individuals are asymptomatic carriers) until and/or unless a precipitating event leads to symptomatic infection (and thus disease). Carriers of drug‐resistant bacteria can also transmit resistant pathogens to others, thus putting the latter at risk of resistant infections. Accumulating evidence suggests that such transmission occurs (...) not only in hospital settings but also in the general community, although considerably more data are needed to assess the extent of this problem. Asymptomatic carriage of drug‐resistant bacteria raises important ethical questions regarding the appropriate public health response, including the degree to which it would be justified to impose burdens on asymptomatic carriers (and others) in order to prevent transmission. In this paper, we (i) summarize current evidence regarding the carriage of key drug‐resistant bacteria, noting important knowledge gaps; and (ii) explore the particular implications of existing public health ethics frameworks for policy‐making regarding asymptomatic carriers. Inter alia, we argue that the relative burdens imposed by public health measures on healthy carriers (as opposed to sick individuals) warrant careful consideration and should be proportionate to the expected public health benefits in terms of risks averted. We conclude that more surveillance and research regarding community transmission will be needed in order to clarify relevant risks and design proportionate policies, although extensive community surveillance itself would also require careful ethical consideration. (shrink)

This essay adopts three accounts of “the social” to get a clearer picture of why there is a barrier faced by the government when implementing contact tracing mobile applications. In Hong Kong's context, the paradox involves declining trust of the government's protection of data privacy and growing concern about data surveillance since the 2019 social unrest I argue that exploring the idea of sociality is valuable in that it re-reconfigures the datafication of pandemic control by revealing different sets of (...) social relations, particularly the asymmetrical power relation between the government and its people. The refusal to download or use the mobile app also shows that the public has a faith in human agency and human resistance in data-saturated cities. (shrink)

The stigmatisation of the gecekondu in post-1945 Turkey is a common theme in the literature. However, these studies have drawn little connection with health issues, even though these are known to be important in the mechanisms of stigmatisation. Policies for tuberculosis (TB) control—then Turkey's “number one health issue”—have tended to focus on individual and biological factors, to the detriment of social or environmental ones that could contribute to making TB a matter of politics and not only of policies. (...) A close study of the practices of the numerous TB-control actors nevertheless reveals an entanglement of the social, the environmental, and the medical questions. Through the emblematic but unknown case study of the TB-control pilot area created in Zeytinburnu in 1961, this article studies discourses, but also graphic representations, portraying the gecekondu as unhealthy, revealing an underlying environmental conception of TB among Turkish public health actors. The choice of Istanbul's biggest gecekondu neighbourhood to be a pilot area originated from a common conception of the gecekondu areas as pathogenic, but also contributed to reinforcing this vision and adding it to the very definition of the gecekondu. It thus participated in the stigmatisation of these areas and their inhabitants, even if some of the study's conclusions undermined the common vision of the gecekondu as populated by poor, rural migrants. However, the pilot project was also conceived as a way to integrate the inhabitants into the modern city. The “pilot” character of the area, if characteristic of the vocabulary of the 1960s, which were also the time of the attempt to “socialise the health services” in Turkey, is questionable. The project displayed a desire to know and control this specific territory rather than a genuine promotion of broader environmental changes to be replicated on a national scale. (shrink)

There are three main categories of rationale for withholding information or telling lies: if overwhelming harm can only be averted through deceit; complete triviality such that it is irrelevant whether the truth is told; a duty to protect the interests of others. Public health authorities are frequently having to form judgements about the public interest, whether to release information or issue warnings. In June 1992, routine surveillance detected patulin levels (a known carcinogen) in samples of apple (...) juice exceeding safety threshold. Remedial actions were promptly taken and it was planned to subsequently publish the information in the routine way. However, the media portrayed the handling of the problem as a conspiracy and there was a short term reduction in juice sales. In October 1995, the UK Committee on Safety of Medicines issued a warning about certain brands of the contraceptive pill, based on the interim results of three unpublished studies. The increased risk of thromboembolism was small, but the resulting scare led to an increase in unwanted pregnancies. The handling of the B.S.E. crisis in the U.K. also led to accusations of incompetence or conspiracy. Public health authorities have to handle uncertainty and frequently have to form judgements for public safety on the basis of evidence of poor quantity and quality. Their task is not helped by the sometimes conflicting agenda of scientists and media. The public also have differing perceptions and interpretations of risk. The series of scares and crises are having a detrimental effect on public confidence in public health authorities. (shrink)