Surveillance is essential for communicable disease prevention and control. Traditional notification of demographic and clinical information, about individuals with selected infectious diseases, allows appropriate public health action and is protected by public health and privacy legislation, but is slow and insensitive. Big data–based electronic surveillance, by commercial bodies and government agencies, which draws on a plethora of internet- and mobile device–based sources, has been widely accepted, if not universally welcomed. Similar anonymous digital sources also contain syndromic information, (...) which can be analysed, using customised algorithms, to rapidly predict infectious disease outbreaks, but the data are nonspecific and predictions sometimes misleading. However, public health authorities could use these online sources, in combination with de-identified personal health data, to provide more accurate and earlier warning of infectious disease events—including exotic or emerging infections—even before the cause is confirmed, and allow more timely public health intervention. Achieving optimal benefits would require access to selected data from personal electronic health and laboratory records and the potential to re-identify individuals found to be involved in outbreaks, to ensure appropriate care and infection control. Despite existing widespread digital surveillance and major potential community benefits of extending its use to communicable disease control, there is considerable public disquiet about allowing public health authorities access to personal health data. 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. (shrink)

Background Outbreaks of infectious disease cause serious and costly health and social problems. Two new technologies – pathogen whole genome sequencing and Big Data analytics – promise to improve our capacity to detect and control outbreaks earlier, saving lives and resources. However, routinely using these technologies to capture more detailed and specific personal information could be perceived as intrusive and a threat to privacy. Method Four community juries were convened in two demographically different Sydney municipalities and two regional cities (...) in New South Wales, Australia to elicit the views of well-informed community members on the acceptability and legitimacy of: making pathogen WGS and linked administrative data available for public health researchusing this information in concert with data linkage and machine learning to enhance communicable disease surveillance systems Fifty participants of diverse backgrounds, mixed genders and ages were recruited by random-digit-dialling and topic-blinded social-media advertising. Each jury was presented with balanced factual evidence supporting different expert perspectives on the potential benefits and costs of technologically enhanced public health research and communicable disease surveillance and given the opportunity to question experts. Results Almost all jurors supported data linkage and WGS on routinely collected patient isolates for the purposes of public health research, provided standard de-identification practices were applied. However, allowing this information to be operationalised as a syndromic surveillance system was highly contentious with three juries voting in favour, and one against by narrow margins. For those in favour, support depended on several conditions related to system oversight and security being met. Those against were concerned about loss of privacy and did not trust Australian governments to run secure and effective systems. Conclusions Participants across all four events strongly supported the introduction of data linkage and pathogenomics to public health research under current research governance structures. Combining pathogen WGS with event-based data surveillance systems, however, is likely to be controversial because of a lack of public trust, even when the potential public health benefits are clear. Any suggestion of private sector involvement or commercialisation of WGS or surveillance data was unanimously rejected. (shrink)

Fairchild, Center for the History and Ethics of Public Health in the Department of Sociomedical Sciences at Columbia University's Mailman School of Public Health Abstract Surveillance is a cornerstone of public health. It permits us to recognize disease outbreaks, to track the incidence and prevalence of threats to public health, and to monitor the effectiveness of our interventions. But surveillance also challenges our understandings of the significance and role of privacy in a liberal democracy. In this paper (...) we trace the century-long history of public health surveillance in the United States situating that history in the context of the broad social, political, and ideological forces that have shaped our conceptions of privacy. Although we focus here on the United States, the debates over privacy that unfolded in the 1960s were repeated in many European nations. The themes we explore here, then, provide a framework for examining the relationship between privacy and public health in other contexts. CiteULike Connotea Del.icio.us What's this? (shrink)

The need to protect the public against the spread of communicable disease provides a good example of the need for a commonsense approach to the use of confidential data. Laboratories need to notify different professionals in order to trace the sources of outbreaks of infection and eradicate the cause. It is often not possible to obtain consent from individual patients, given the rapid time scale required. In doing so, however, laboratory staff and others would contravene the Data Protection Act (...) in passing on information without consent. Section 60 of the Health and Social Care Act was designed to overcome barriers to research relying on data accumulated in the past and this type of public health work. But this is proving a sluggish procedure. It is an awkward solution to the problem of data use without specific consent. This problem will be overcome only when the public can have sufficient trust in safeguards that are in place to protect their safety and confidentiality so that these important activities can be pursued without specific informed consent. (shrink)

Review of Searching Eyes: Privacy, the State, and Disease Surveillance in America – By Amy L. Fairchild, Ronald Bayer, and James Colgrove.

What justified the Center for Disease Control's1999 determination to require HIV casereporting? Why were names necessary? Why didopponents view the reporting of names with suchalarm? This paper retells the history of theencounters over HIV reporting that had occurredsince the mid 1980s. In placing HIV reportingwithin a larger context, however, we understandthe clash between privacy and public healthnecessity as a complex issue, both inhistorical and contemporary practice. Byunderscoring the similarities and differenceswith the histories of surveillance for otherinfectious diseases, vaccination, (...) occupationaldiseases, cancer, and birth defects, and HIVreporting internationally, we can betterunderstand the implications of the HIV debatefor an ethics of surveillance more generally. (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)

Anthropogenic climate change is causing temperature rise in temperate zones resulting in climate conditions more similar to subtropical zones. As a result, rising temperatures increase the range of disease-carrying insects to new areas outside of subtropical zones, and increased precipitation causes flooding that is more hospitable for vector breeding. State governments, the federal government, and governmental agencies, like the Animal and Plant Health Inspection Service of USDA and the National Notifiable Disease Surveillance System of the U.S. Centers (...) for Disease Control and Prevention, lack a coordinated plan for vector-borne disease accompanying climate change. APHIS focuses its surveillance primarily on the effect of illness on agricultural production, while NNDSS focuses on the emergence of pathogens affecting human health. This article provides an analysis of the current framework of surveillance of, and response to, vector-borne infectious diseases, the impacts of climate change on the spread of vector-borne infectious diseases, and recommends changes to federal law to address these threats. (shrink)

Debates about effective responses to the COVID-19 pandemic have emphasized the paramount importance of digital tracing technology in suppressing the disease. So far, discussions about the ethics of this technology have focused on privacy concerns, efficacy, and uptake. However, important issues regarding power imbalances and vulnerability also warrant attention. As demonstrated in other forms of digital surveillance, vulnerable subpopulations pay a higher price for surveillance measures. There is reason to worry that some types of COVID-19 technology might (...) lead to the employment of disproportionate profiling, policing, and criminalization of marginalized groups. It is, thus, of crucial importance to interrogate vulnerability in COVID-19 apps and ensure that the development, implementation, and data use of this surveillance technology avoids exacerbating vulnerability and the risk of harm to surveilled subpopulations, while maintaining the benefits of data collection across the whole population. This paper outlines the major challenges and a set of values that should be taken into account when implementing disease surveillance technology in the pandemic response. (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)

Syndromic surveillance uses new ways of gathering data to identify possible disease outbreaks. Because syndromic surveillance can be implemented to detect patterns before diseases are even identified, it poses novel problems for informed consent, patient privacy and confidentiality, and risks of stigmatization. This paper analyzes these ethical issues from the viewpoint of the patient as victim and vector. It concludes by pointing out that the new International Health Regulations fail to take full account of the ethical challenges (...) raised by syndromic surveillance. (shrink)

The Center for Disease Control and Prevention’s Active Bacterial Core Surveillance (CDC ABCs) Program is a collaborative effort betweeen the CDC, state health departments, laboratories, and universities to track invasive bacterial pathogens of particular importance to public health [1]. The year-end surveillance reports produced by this program help to shape public policy and coordinate responses to emerging infectious diseases over time. The ABCs case report form (CRF) data represents an excellent opportunity for data reuse beyond the original (...) surveillance purposes. (shrink)

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)

There is a flood of papers being published on new ways to diagnose Alzheimer disease before it is symptomatic, involving a combination of invasive tests , and pen and paper tests. This changes the landscape with respect to genetic tests for risk of AD, making rational suicide a much more feasible option. Before the availability of these presymptomatic tests, even someone with a high risk of developing AD could not know if and when the disease was approaching. One (...) could lose years of good life by committing suicide too soon, or risk waiting until it was too late and dementia had already sapped one of the ability to form and carry out a plan. One can now put together what one knows about one's risk, with continuing surveillance via these clinical tests, and have a good strategy for planning one's suicide before one becomes demented. This has implications for how these genetic and clinical tests are marketed and deployed, and the language one uses to speak about them. The phrase ‘there is nothing one can do’ is insulting and disrespectful of the planned suicide option, as is the language of the Risk Evaluation and Education for Alzheimer's Disease studies and others that conclude that it is ‘safe’ to tell subjects their risk status for AD. Further, the argument put forward by some researchers that presymptomatic testing should remain within research protocols, and the results not shared with subjects until such time as treatments become available, disrespects the autonomy of people at high risk who consider suicide an option. (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)

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)

Health professionals, by agreeing to provide care, accept a fiduciary role that entails an obligation to preserve trust. We trust health professionals to be competent, to promote patient interests, and to properly utilize their discretionary power. While some health professionals argue that such activities as secretly screening for drugs or sexually transmitted diseases are necessary to fulfill their fiduciary obligations, these may actually constitute a breach of trust. In this paper, I argue that, in the specific case of Munchausen’s Syndrome (...) by Proxy, covert surveillance is ethically justifiable and does not constitute a breach of trust and an abuse of the fiduciary relationship. (shrink)

Background The post-trial period is the time period after the end of study drug administration. It is unclear whether post-trial arrangements for patient surveillance are routinely included in study protocols and consents, and whether research ethics boards (REB) consider the post-trial period. Objectives The objective was to determine whether trial protocols and consent forms reviewed by the REB describe procedures for post-trial period surveillance. Methods An observational study of protocols of randomised trials of chronic therapies for cardiac conditions, (...) approved by the REB of two academic institutions affiliated with the University of Toronto in Canada (University Health Network and Mount Sinai Hospital) from 1995 to 2007. Plans for patient surveillance in the post-trial period described in the protocol or in the consent form before and after REB approval were recorded. Results 42 studies were identified including 18 heart failure and 15 coronary artery disease trials. Only four studies planned a clinical visit after trial termination, and an additional three planned a telephone contact after trial completion. Five trials submitted consent forms to the REB with a discussion of the post-trial period. Conclusions The majority of protocols and consent forms did not discuss plans for post-trial period surveillance. The post-trial period and the REB approval process could be improved by systematic follow-up being described in the protocol and consent form. The small number of trial protocols evaluated in the study may impair the degree to which the results can be generalised. (shrink)

Alternatives to convenience sampling (CS) are needed for HIV/STI surveillance of most-at-risk populations in Latin America. We compared CS, time space sampling (TSS), and respondent driven sampling (RDS) for recruitment of men who have sex with men (MSM) and transgender women (TW) in Lima, Peru. During concurrent 60-day periods from June-August, 2011, we recruited MSM/TW for epidemiologic surveillance using CS, TSS, and RDS. A total of 748 participants were recruited through CS, 233 through TSS, and 127 through RDS. (...) The TSS sample included the largest proportion of TW (30.7 %) and the lowest percentage of subjects who had previously participated in HIV/STI research (14.9 %). The prevalence of newly diagnosed HIV infection, according to participants' self-reported previous HIV diagnosis, was highest among TSS recruits (17.9 %) compared with RDS (12.6 %) and CS (10.2 %). TSS identified diverse populations of MSM/TW with higher prevalences of HIV/STIs not accessed by other methods. (shrink)

Containing the spread of pandemic transmission tends to go hand in hand with a surveillance regime that tracks movement, transmission and those who contract the virus or disease. An enduring legacy of the COVID-19 crisis will be the incremental development of surveillance technologies, ostensibly purposed to identify the threat and spread of a pandemic, giving birth to what amounts to the pandemic surveillance state. Whether this is seen as an undesirable outcome depends very much on the (...) field of expertise and the relevant slant. Health professionals and epidemiologists favor more surveillance; privacy and data security advocates fear a further denuding of protections. This paper examines the dangers of such technologies and efforts to seek a middle ground on app technologies designed to protect privacy. Such designs may, in time, seem more hopeful than actual. (shrink)

The exponential accumulation, processing and accrual of big data in healthcare are only possible through an equally rapidly evolving field of big data analytics. The latter offers the capacity to rationalize, understand and use big data to serve many different purposes, from improved services modelling to prediction of treatment outcomes, to greater patient and disease stratification. In the area of infectious diseases, the application of big data analytics has introduced a number of changes in the information accumulation models. These (...) are discussed by comparing the traditional and new models of data accumulation. Big data analytics is fast becoming a crucial component for the modelling of transmission—aiding infection control measures and policies—emergency response analyses required during local or international outbreaks. However, the application of big data analytics in infectious diseases is coupled with a number of ethical impacts. Four key areas are discussed in this paper: automation and algorithmic reliance impacting freedom of choice, big data analytics complexity impacting informed consent, reliance on profiling impacting individual and group identities and justice/fair access and increased surveillance and population intervention capabilities impacting behavioural norms and practices. Furthermore, the extension of big data analytics to include information derived from personal devices, such as mobile phones and wearables as part of infectious disease frameworks in the near future and their potential ethical impacts are discussed. Considered together, the need for a constructive and transparent inclusion of ethical questioning in this rapidly evolving field becomes an increasing necessity in order to provide a moral foundation for the societal acceptance and responsible development of the technological advancement. (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.

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)

Livestock production has been confronted with several epidemics over the last decades. The morality of common animal disease strategies—stamping out and vaccination—is being debated and provokes controversies among farmers, authorities and the broader public. Given the complexity and controversy of choosing an appropriate control strategy, this article explores the potential of nano-enabled diagnostics in future livestock production. At first glance, these applications offer promising opportunities for better animal disease surveillance. By significantly shortening the reaction time from diagnosis (...) to appropriate control, they could complement the current disease management strategies. Although nano-enabled diagnostics will not make livestock disease eradication strategies redundant or completely free of the culling of infected animals, these diagnostics could significantly reduce the number of culled animals and animal suffering. This article aims to demonstrate that the ethical assessment of advanced diagnostics can build on the experiences with decision making in biomedical ethics where nonmaleficence, beneficence, autonomy and justice serve as important benchmarks. Nano-enabled diagnostics may be an ethically sound solution if it can resolve the dilemma between stamping out and vaccination in favor of the latter and if it can balance the autonomy–paternalism dilemma between farmers and authorities. The technology should allow to be switched on and off by farmers, whilst simultaneously allowing for a weak paternalism on behalf of authorities in order to benefit the farmer and broader society and to protect them from harm. (shrink)

Background: Dengue Disease is a mosquito-borne tropical disease caused by the dengue virus, symptoms typically begin three to fourteen days after infection. This may include a high fever, headache, vomiting, muscle and joint pains, and a characteristic skin rash. Dengue serology is applied in different settings, such as for surveillance, in health care facilities in endemic areas and in travel clinics in non-endemic areas. The applicability and quality of serological tests in dengue endemic regions has to be (...) judged against a background of potential cross reactivity with other flavi-viruses, difficulties in distinguishing primary from secondary infections and technological problems related to the fact that most dengue endemic regions are relatively poor of resources .Objectives: to help doctors and patients in diagnosing Dengue Disease and give them the information of how to prevent Dengue Disease and to be able to understand the signs and symptoms of Dengue Disease. Methods: We collected all relevant material for Dengue Disease. Then we designed and implemented a knowledge based system for diagnosing Dengue Disease using SL5 Object Language. Results: The knowledge based system was evaluated by a group of Patients and specialized doctors and they found it very friendly and easy to use. (shrink)

Emerging genomic technologies promise more efficient infectious disease control. Whole genome sequencing is increasingly being used in tuberculosis diagnosis, surveillance, and epidemiology. However, while the use of WGS by public health agencies may raise ethical, legal, and socio-political concerns, these challenges are poorly understood. Between November 2017 and April 2018, we conducted semi-structured interviews with 22 key stakeholders across the fields of governance and policy, public health, and laboratory sciences representing the major jurisdictions currently using WGS in national (...) TB programs. Thematic analysis of the interviews was conducted using NVivo 11. Respondents identified several ethical and practical challenges associated with WGS in TB care and surveillance, all related to issues of trust, including: 1) the power of public health; 2) data sharing and profits derived from surveillance efforts; and 3) concerns regarding who has access to, and can benefit from, the technology. Additional challenges included: the potential utility that WGS adds to a public health program, the risks associated with linking necessary epidemiological metadata to the genomic data, and challenges associated with jurisdictional capacity to implement the technology. Successful implementation of WGS is dependent on fostering relationships of trust between those working with genomics technology and those directly impacted by it, including clinicians. Building trust between the public and the public health agencies and within public health agencies themselves is critical due to the inherent complexity of WGS and its implementation for communicable disease control purposes. (shrink)

The sociological study of knowledge infrastructures and classification has traditionally focused on the politics and practices of classifying things or people. However, actors’ work to escape dominant infrastructures and pre-established classification systems has received little attention. In response to this, this article argues that it is crucial to analyze, not only the practices and politics of classification, but also actors’ work to escape dominant classification systems. The article has two aims: First, to make a theoretical contribution to the study of (...) classification by proposing to pay analytical attention to practices of escaping classification, what the article dubs classification egress. This concept directs our attention not only to the practices and politics of classifying things, but also to how actors work to escape or resist classification systems in practice. Second, the article aims to increase our understanding of the history of quantified and statistical health surveillance. In this, the article investigates how actors in health surveillance assembled a knowledge infrastructure for surveilling, quantifying, and detecting unknown patterns of congenital malformations in the wake of the thalidomide disaster in the early 1960s. The empirical account centers on the actors’ work to detect congenital malformations and escape the dominant nosological classification of diseases, the International Classification of Diseases (ICD), by replacing it with a procedural standard for reporting of symptoms. Thus, the article investigates how actors deal with the tension between the-already-known-and-classified and the unknown-unclassified-phenomenon in health surveillance practice. (shrink)

The mechanism(s) by which lentiviruses and related non‐oncogenic retroviruses (e.g. HTLV‐III, the etiologic agent of AIDS) escape immune surveillance, and thereby create long term progressive disease conditions, has been unknown until recently. Studies with two lentiviruses have begun to illuminate the mechanisms. In one, antigenic drift in the virus appears to be the primary mechanism of escape from immune surveillance; in the second, selective masking of the viral envelope glycoprotein epitope, which normally elicits neutralizing anti‐body, appears to (...) provide the means of escape. (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)

For at least the past 15 years, food safety stakeholders across all levels of government have recognized the critical role that state and local agencies play in our nation's food safety system. State and local agencies are the first responders to foodborne outbreaks and have primary responsibility for keeping their residents safe from foodborne disease through effective surveillance and rapid response to outbreaks. They also conduct the vast majority of food safety inspections across the nation's restaurants, grocery stores, (...) and other food service and food retail establishments.Recent efforts among industry and government officials alike have focused on creating a more integrated, prevention-oriented food safety system. The Food Safety Modernization Act, the first major overhaul of the nation's food safety laws since the 1930s, now mandates that most sectors of the food industry put preventive controls in place, changing the emphasis of what the FDA does from response to prevention. (shrink)

Social media applications such as Twitter, YouTube and Facebook have attained huge popularity, with more than three billion people and organizations predicted to have a social networking account by 2015. Social media offers a rapid avenue of communication with the public and has potential benefits for communicable disease control and surveillance. However, its application in everyday public health practice raises a number of important issues around confidentiality and autonomy. We report here a case from local level health protection (...) where the friend of an individual with meningococcal septicaemia used a social networking site to notify potential contacts. (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 Covid-19 pandemic has demonstrated the potential of genomic technologies for the detection and surveillance of infectious diseases. Pathogen genomics is likely to play a major role in the future of research and clinical implementation of genomic technologies. However, unlike human genetics, the specific ethical and social challenges associated with the implementation of infectious disease genomics has received comparatively little attention. In this paper, we contribute to this literature, focusing on the potential consequences for individuals and communities of (...) the use of these technologies. We concentrate on areas of challenges related to privacy, stigma, discrimination and the return of results in the cases of the surveillance of known pathogens, metagenomics and host genomics. (shrink)

Comprehension and recall of informed consent was assessed after the study closure in the parents/guardians of a birth cohort of children participating in an intensive three-year diarrhoeal surveillance. A structured questionnaire was administered by field workers who had not participated in the study's follow-up protocol. Of 368 respondents, 329 (89.4 per cent) stated that the study was adequately explained during enrolment, but only 159 (43.2 per cent) could recall that it was on diarrhoea. Nearly half (45.9 per cent) of (...) the respondents stated that they would not have participated if free medical treatment was not provided, although the free medical clinic was not offered at enrolment. Spousal approval (82.9 per cent) was the most important factor in the decision to participate. In the multivariate analysis, maternal education was associated with increased awareness about the disease under study: mothers without any formal education had the lowest awareness (OR = 3.47, 95 per cent CI = 1.60–7.51). Despite a high compliance with the study protocol, retention of understanding about the research study was low over a long period of time. Although the local government provides free healthcare in the study area, respondents cited free healthcare as an important reason for participation, highlighting the need for true health equity before meaningful informed consent can be obtained. (shrink)

Comprehension and recall of informed consent was assessed after the study closure in the parents/guardians of a birth cohort of children participating in an intensive three-year diarrhoeal surveillance. A structured questionnaire was administered by field workers who had not participated in the study's follow-up protocol. Of 368 respondents, 329 stated that the study was adequately explained during enrolment, but only 159 could recall that it was on diarrhoea. Nearly half of the respondents stated that they would not have participated (...) if free medical treatment was not provided, although the free medical clinic was not offered at enrolment. Spousal approval was the most important factor in the decision to participate. In the multivariate analysis, maternal education was associated with increased awareness about the disease under study: mothers without any formal education had the lowest awareness. Despite a high compliance with the study protocol, retention of understanding about the research study was low over a long period of time. Although the local government provides free healthcare in the study area, respondents cited free healthcare as an important reason for participation, highlighting the need for true health equity before meaningful informed consent can be obtained. (shrink)

Nipah virus is a priority pathogen that is receiving increasing attention among scientists and in work on epidemic preparedness. Despite this trend, there has been almost no bioethical work examining ethical considerations surrounding the epidemiology, prevention, and treatment of Nipah virus or research that has already begun into animal and human vaccines. In this paper, we advance the case for further work on Nipah virus disease in public health ethics due to the distinct issues it raises concerning communication about (...) the modes of transmission, the burdens of public health surveillance, the recent use of stringent public health measures during epidemics, and social or religious norms intersecting with preventive measures. We also advance the case for further work on Nipah virus disease in research ethics, given ethical issues surrounding potential vaccine trials for a high-fatality disease with sporadic spillover events, the different local contexts where trials may occur, and the potential use of unproven therapeutics during outbreaks. Further bioethics work may help to ensure that research and public health interventions for Nipah virus disease are ethically acceptable and more likely to be effective. (shrink)

Over the last decade, our appreciation of the importance of the nucleolus for cellular function has progressed from the ordinary to the extraordinary. We no longer think of the nucleolus as simply the site of ribosome production, or a dynamic subnuclear body noted by pathologists for its changes in size and shape with malignancy. Instead, the nucleolus has emerged as a key controller of many cellular processes that are fundamental to normal cell homeostasis and the target for dysregulation in many (...) human diseases; in some cases, independent of its functions in ribosome biogenesis. These extra‐nucleolar or new functions, which we term “non‐canonical” to distinguish them from the more traditional role of the nucleolus in ribosome synthesis, are the focus of this review. In particular, we explore how these non‐canonical functions may provide novel insights into human disease and in some cases new targets for therapeutic development. (shrink)

The genetic modification of pigs as a source of transplantable organs is one of several possible solutions to the chronic organ shortage. This paper describes existing ethical tensions in xenotransplantation (XTx) that argue against pursuing it. Recommendations for lifelong infectious disease surveillance and notification of close contacts of recipients are in tension with the rights of human research subjects. Parental/guardian consent for pediatric xenograft recipients is in tension with a child’s right to an open future. Individual consent to (...) transplant is in tension with public health threats that include zoonotic diseases. XTx amplifies concerns about justice in organ transplantation and could exacerbate existing inequities. The prevention of infectious disease in source animals is in tension with the best practices of animal care and animal welfare, requiring isolation, ethologically inappropriate housing, and invasive reproductive procedures that would severely impact the well-being of intelligent social creatures like pigs. (shrink)

Diagnostic testing can be used for many purposes, including testing to facilitate the clinical care of individual patients, testing as an inclusion criterion for clinical trial participation, and both passive and active surveillance testing of the general population in order to facilitate public health outcomes, such as the containment or mitigation of an infectious disease. As such, diagnostic testing presents us with ethical questions that are, in part, already addressed in the literature on clinical care as well as (...) clinical research (such as the rights of patients to refuse testing or treatment in the clinical setting or the rights of participants in randomized controlled trials to withdraw from the trial at any time). However, diagnostic testing, for the purpose of disease surveillance also raises ethical issues that we do not encounter in these settings, and thus have not been much discussed. In this paper we will be concerned with the similarities and differences between the ethical considerations in these three domains: clinical care, clinical research, and public health, as they relate to diagnostic testing specifically. Via an examination of the COVID-19 case we will show how an appeal to the concept of diagnostic justice helps us to make sense of the (at times competing) ethical considerations in these three domains. (shrink)

Contemporary infectious disease surveillance systems aim to employ the speed and scope of big data in an attempt to provide global health security. Both shifts - the perception of health problems through the framework of global health security and the corresponding technological approaches – imply epistemological changes, methodological ambivalences as well as manifold societal effects. Bringing current findings from social sciences and public health praxis into a dialogue, this conversation style contribution points out several broader implications of changing (...) disease surveillance. The conversation covers epidemiological issues such as the shift from expert knowledge to algorithmic knowledge, the securitization of global health, and the construction of new kinds of threats. Those developments are detailed and discussed in their impacts for health provision in a broader sense. (shrink)

Most of the discussion in bioethics and health policy concerning social responsibility for health has focused on society’s obligation to provide access to healthcare. While ensuring access to healthcare is an important social responsibility, societies can promote health in many other ways, such as through sanitation, pollution control, food and drug safety, health education, disease surveillance, urban planning and occupational health. Greater attention should be paid to strategies for health promotion other than access to healthcare, such as environmental (...) and public health and health research.Lifestyle plays a major role in most of the illnesses in industrialised nations.1 Six of the 10 leading factors contributing to the global burden of disease are lifestyle related: unsafe sex, high blood pressure, tobacco use, alcohol use, high cholesterol and obesity.2 Lifestyle-related illnesses also contribute to the rising costs of healthcare. Spending on healthcare accounts for about 16% of the gross domestic product in the USA, or US$1.9 trillion.3 Although smoking has declined steadily there since the 1960s, smoking-related medical expenses are still about US$75.5 billion per year.4 Obesity, which has been climbing in the past two decades, accounts for about US$75 billion in healthcare costs there each year.5 Alcoholism and drug addiction in the USA account for annual healthcare costs of about US$22.5 billion and US$12 billion, respectively.6,7 Federal government spending on healthcare relating to HIV/AIDS is over US$13 billion per year.8Given the well-documented relationship between lifestyle, disease burden and healthcare costs, it makes economic and medical sense to hold individuals morally responsible for their health-related choices. While this view has a great deal of intuitive appeal, it also faces numerous objections.9–12 First, holding individuals entirely responsible for their own health conflicts with medicine’s obligation to treat the sick and society’s obligation …. (shrink)

In the midst of a pandemic, what does it mean to see the Other as Other and not as a carrier of the virus? I argue that in seeking a Levinasian response to the pandemic, we must be mindful of the implications of the mechanisms of surveillance and control that, presented as ways to protect the Other, operate by controlling the Other and rendering our relation to the Other increasingly impersonal. Subjected to these mechanisms, the Other becomes a dangerous (...) entity that must be controlled, and the state that deploys them comes increasingly to mediate the relation between self and Other. The more we rely on such mechanisms for protection, the easier it becomes to regard the Other not as one who summons me to an infinite responsibility but as a vector of disease. Despite all the differences between Levinas’s and Foucault’s approaches, reading them in conversation shows that the control and surveillance of the population functions within a discourse that medicalizes and objectifies the Other in favor of the centralizing power that uses those technologies. In defiance of Levinas’s warning against imposing a narrative on the Other’s suffering, this discourse coopts that suffering as a justification for biopower. (shrink)

Background: Sharing of tissue samples for research and disease surveillance purposes has become increasingly important. While it is clear that this is an area of intense, international controversy, there is an absence of data about what researchers themselves and those involved in the transfer of samples think about these issues, particularly in developing countries. Methods: A survey was carried out in a number of Asian countries and in Egypt to explore what researchers and others involved in research, storage (...) and transfer of human tissue samples thought about some of the issues related to sharing of such samples. Results: The results demonstrated broad agreement with the positions taken by developing countries in the current debate, favoring quite severe restrictions on the use of samples by developed countries. Conclusions: It is recommended that an international agreement is developed on what conditions should be attached to any sharing of human tissue samples across borders. (shrink)

Introduction to, and overview of, the contents of the Symposium on consent and confidentialityThe papers in this symposium are based on a meeting held by the Academy of Medical Sciences in London on 12 February 2002. The decision to hold this meeting, and to explore in detail these important and contentious issues, arose from a number of concerns that the Academy felt about what may reasonably be called “impediments to medical research”.These include: The regulations arising from the implementation of the (...) European data protection directive and their effect on the gathering and holding of data needed for disease surveillance as well as for research. Phil Boyd, in his paper, presents the views and the work of the Information Commission, the responsible UK body in this area. The “Source Informatics” case where the Department of Health requested a judicial review on the use, by this company, of anonymised prescribing data from general practitioner records for informing the pharmaceutical industry about patterns of drug use. Mr Justice Latham ruled that the use of even this anonymised data for commercial purposes could be a breach of patients' rights to confidentiality. The Court of Appeal, however, emphatically reversed his decision and, no further appeal having been made to the House of Lords, the law of the land is now clear that there is no breach of confidentiality in the use of anonymised data. It did seem to us, …. (shrink)

In the past decade, numerous ethical frameworks have been developed to support public health decision‐making in challenging areas. Before the COVID‐19 pandemic began, members of the authorship team were involved in research programmes, in which the development of ethical frameworks was planned, to guide (a) the use of new technologies for emerging infectious disease surveillance; and (b) the allocation of scarce supplies of pandemic influenza vaccine. However, as the pandemic evolved, significant practical challenges emerged that led to our (...) questioning the value of these frameworks. We now believe that a normative instrument, such as a framework, cannot adequately or reliably provide the ethical guidance that needs to be incorporated into public health decision‐making during natural disasters or infectious disease emergencies. Recently it has been suggested that there are potentially more dynamic, flexible, and effective ways to navigate decisions involving complex considerations entailed in policies and practices during a public health emergency. In this paper, we first outline the key functions of a public health ethics framework, before describing why we believe it would not be fit for purpose during a crisis. We end by considering whether proposed alternative methods to promote ethical public health decision‐making goals have the potential to meet these objectives. (shrink)