This chapter contains sections titled: The Ethical Importance of Infectious Disease The Global Infectious Disease Status Quo: AIDS and TB Drug Resistance Limiting Liberty in Contexts of Contagion Improving Global Health References Further reading.

Purposeful infection of healthy volunteers with a microbial pathogen seems at odds with acceptable ethical standards, but is an important contemporary research avenue used to study infectious diseases and their treatments. Generally termed ‘controlled human infection studies’, this research is particularly useful for fast tracking the development of candidate vaccines and may provide unique insight into disease pathogenesis otherwise unavailable. However, scarce bioethical literature is currently available to assist researchers and research ethics committees in negotiating the distinct (...) issues raised by research involving purposefully infecting healthy volunteers. In this article, we present two separate challenge studies and highlight the ethical issues of human challenge studies as seen through a well-constructed framework. Beyond the same stringent ethical standards seen in other areas of medical research, we conclude that human challenge studies should also include: independent expert reviews, including systematic reviews; a publicly available rationale for the research; implementation of measures to protect the public from spread of infection beyond the research setting; and a new system for compensation for harm. We hope these additions may encourage safer and more ethical research practice and help to safeguard public confidence in this vital research alternative in years to come. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Public Health Ethics: Health by the NumbersMartina Darragh (bio) and Pat Milmoe McCarrick (bio)Hippocrates had nothing to say about public health. Rather, the idea that a government should protect its citizens from disease by maintaining sanitary conditions has its origin in Renaissance humanities texts, and the notion that physicians have public health responsibilities emerged in the works of such Enlightenment authors as Johann Peter Frank, Benjamin Rush, and (...) John Gregory (II, Coughlin and Beauchamp 1996). When the spread of infectious diseases such as typhoid and cholera accompanied the growth of the Industrial Revolution, England was the first to respond by passing the Public Health Act of 1848. The motivation for this reform was not based in humanitarian concerns but in the realization that unsanitary conditions were costly to industry. “... [The] founders of the public health movement were guided by nineteenth century utilitarian moral theories... the greatest good for the greatest number... accompanied by a growing appreciation for the innate value and dignity of mankind... however, the rights and autonomy of individuals have not always been respected in pursuing these important objectives” (I, Coughlin 1995, p. 1).Public health projects have dramatically improved global health status. One measure of their success is that “... most poor people now live longer, on average, than the wealthiest people a century ago” (I, Beaglehole and Bonita 1997, p. 13) These projects are not limited to such activities as disinfecting sewers. “Public health is what we, as a society, do to collectively assure the conditions in which people can be healthy. This requires that continuing and emerging threats to the health of the public be successfully countered. These threats include immediate crises, such as the AIDS epidemic; enduring problems, such as injuries and chronic illness; and impending crises foreshadowed by such developments as the toxic by-products of a modern economy” (I, Institute of Medicine (IOM) 1988, p. 1) The practice of public health has embraced this IOM challenge and includes the subspecialties of epidemiology, health promotion and education, public health administration, international health, maternal and child health, biostatistics, environmental health, and nutrition. This annotated bibliography focuses on epidemiology, [End Page 339] health promotion and education, and public health administration, and includes a wide variety of opinions on each topic.EpidemiologyAt first glance, it is hard to see what ethical issues could arise in population studies of the causes and control of illness. Disclosure of risk information in the clinical encounter is complicated by issues of uncertainty with regard to the data itself. Causation and causal inference may be affected by “wish bias,” leading to studies that use the same data but reach widely varying conclusions (II, Weed 1997). Given the complexity of the statistical calculations used to validate public health recommendations, and mass media’s portrayal of them, the public may be unintentionally deceived by population-based recommendations (V, Seedhouse 1997; II, Lupton 1995). With the addition of genetic screening, another layer of statistical complexity is added to this mix (VI, Stone and Steward 1996).Health Promotion and EducationIncreased life expectancy brought about by advances in public health has raised a new set of problems. With the realization that illness can be promoted in part by individual life-style choices, population-based recommendations about risk factors become important in the clinical encounter. This shift is not without difficulties; one author notes that he has yet to receive any risk information from his physicians, even when he asks “the experts” (V, Dugdale 1998). This may be due in part to the fact that “... public health lacks a vocabulary with which to speak about and identify commonalities among health problems experienced by very different populations” (IV, Mann 1997, p. 8). Furthermore, the mix of disciplines informing health promotion activities (sociology, psychology, recreation medicine, and the like) creates an illusion of shared ethics where none exists, which in turn leads to programs based on value systems that may not be meaningful for the populations they serve (V, Seedhouse 1997).Given these factors, a number of authors are skeptical of introducing public health measures into the clinical encounter. “We might do well to encourage people to live lives of modified hedonism so that they might... (shrink)

This paper examines the characteristics of infectious diseases that raise special medical and social ethical issues, and explores ways of integrating both current bioethical and classical public health ethics concerns. Many of the ethical issues raised by infectious diseases are related to these diseases’ powerful ability to engender fear in individuals and panic in populations. We address the association of some infectious diseases with high morbidity and mortality rates, the sense (...) that infectious diseases are caused by invasion or attack on humans by foreign micro‐organisms, the acute onset and rapid course of many infectious diseases, and, in particular, the communicability of infectious diseases. The individual fear and community panic associated with infectious diseases often leads to rapid, emotionally driven decision making about public health policies needed to protect the community that may be in conflict with current bioethical principles regarding the care of individual patients. The discussion includes recent examples where dialogue between public health practitioners and medical‐ethicists has helped resolve ethical issues that require us to consider the infected patient as both a victim with individual needs and rights and as a potential vector of disease that is of concern to the community. (shrink)

The Infectious Diseases Act entered into force officially on 14 November 2018 in Bangladesh. The Act is designed to raise awareness of, prevent, control, and eradicate infectious or communicable diseases to address public health emergencies and reduce health risks. A novel coronavirus disease was first identified in Bangladesh on 8 March 2020, and the Ministry of Health and Family Welfare issued a gazette on 23 March, listing COVID-19 as an infectious disease and addressing COVID-19 as (...) a public health emergency. The gazette empowers the government to monitor the spread of infection. Despite there being an infrastructure of research ethics committees in almost all hospitals in Bangladesh, a lack of such committees in the clinical setting often forces healthcare professionals to allocate scarce healthcare resources to the task. These personnel are often either influenced by materialistic matters or guided by the emergency policies, without reaching a consensus on how to allocate scarce resources in times of need, especially in the time of the COVID-19 pandemic. Ethical dilemmas often arise when a number of patients with COVID-19, especially in poor and middle-class areas, are denied care while elites are prioritized to receive such scarce resources. Resource allocation in healthcare during the COVID-19 pandemic in Bangladesh appears to be unethical and in direct conflict with the biomedical principles of non-maleficence and procedural justice. The findings of this study suggest that the Act needs substantive changes in the stipulation of policy directing hospitals in the provision of resource allocation framework. Furthermore, parliament should produce guidance outlining how to successfully implement the law with the aim of protecting public health in times of emergency, especially the COVID-19 pandemic. (shrink)

In spite of extensive criticisms, war metaphors are still widespread in medical discourse. In the domain of public health analogies between war and infectious diseases are rooted in the similar impacts they can have on political institutions and communities. This similarity has been emphasized by the recent trend of addressing infectious disease from the point of view of national security. Nevertheless, it is here argued that the analogy cannot be used to model normative principles for treating carriers (...) of contagious diseases after the principles of ius in bello . Yet, the analogy may provide some useful practical and theoretical insights in tackling the growing problem of limiting the spread of drug-resistant pathogens: an issue that generates increasing worries and raises difficult ethical and political questions of rights, responsibilities and obligations. It is suggested that if anti-microbials and antibiotics are seen as strategic information, their misuse can be usefully compared to careless talk in times of war. (shrink)

Zika virus was recognised in 2016 as an important vector-borne cause of congenital malformations and Guillain-Barré syndrome, during a major epidemic in Latin America, centred in Northeastern Brazil. The WHO and Pan American Health Organisation, with partner agencies, initiated a coordinated global response including public health intervention and urgent scientific research, as well as ethical analysis as a vital element of policy design. In this paper, we summarise the major ethical issues raised during the Zika epidemic, highlighting the (...) PAHO ethics guidance and the role of ethics in emergency responses, before turning to ethical issues that are yet to be resolved. Zika raises traditional bioethical issues related to reproduction, prenatal diagnosis of serious malformations and unjust disparities in health outcomes. But the epidemic has also highlighted important issues of growing interest in public health ethics, such as the international spread of infectious disease; the central importance of reproductive healthcare in preventing maternal and neonatal morbidity and mortality; diagnostic and reporting biases; vector control and the links between vectors, climate change, and disparities in the global burden of disease. Finally, there are controversies regarding Zika vaccine research and eventual deployment. Zika virus was a neglected disease for over 50 years before the outbreak in Brazil. As it continues to spread, public health agencies should promote gender equity and disease control efforts in Latin America, while preparing for the possibility of a global epidemic. (shrink)

ABSTRACT This paper reviews the dynamics behind, and ethical issues associated with, the phenomenon of drug resistance. Drug resistance is an important ethical issue partly because of the severe consequences likely to result from the increase in drug resistant pathogens if more is not done to control them. Drug resistance is also an ethical issue because, rather than being a mere quirk of nature, the problem is largely a product of drug distribution. Drug resistance results from the over‐consumption of (...) antibiotics by the wealthy; and it, ironically, results from the under‐consumption of antibiotics, usually by the poor or otherwise marginalized. In both kinds of cases the phenomenon of drug resistance illustrates why health (care) – at least in the context of infectious disease – should be treated as a (global) public good. The point is that drug resistance involves ‘externalities’ affecting third parties. When one patient develops a resistant strain of disease because of her over‐ or under‐consumption of medication, this more dangerous malady poses increased risk to others. The propriety of free‐market distribution of goods subject to externalities is famously dubious – given that the ‘efficiency’ rationale behind markets assumes an absence of externalities. Market failure in the context of drug resistance is partly revealed by the fact that no new classes of antibiotics have been developed since 1970. I conclude by arguing that the case of drug resistance reveals additional reasons – to those traditionally appealed to by bioethicists – for treating health care as something special when making policy decisions about its distribution. (shrink)

Mandatory reporting of infectious diseases (MRID) is an essential practice to prevent disease outbreaks. Disease notification is a mandatory procedure for most infectious diseases, even during non-pandemic periods in healthcare. The main rationale behind MRID is the protection of public health. The information and data provided by infectious disease reports are used for many purposes, such as preventing the spread and potential negative impact of infectious diseases, assessing the national and global situation (...) regarding reported diseases, conducting scientific research and planning health policy. In this context, the relevant information benefits public health, health systems and scientific work. Additionally, the follow up and treatment of individuals with infectious diseases is a necessity in certain cases to protect those who cohabit with them. However, these benefits cannot be accepted as unrestricted justifications for MRID, since it is evident that reporting should be conducted within ethical and legal boundaries. MRID should only be devised and implemented with due regard to balancing potential benefits between all individuals, as well as between the individual and the rest of society. Disease notification systems that are not designed with a balancing and harm-reductionist approach may lead to stigmatisation and discrimination. This study aims to investigate the legal framework and ethical issues regarding the reporting of individuals diagnosed with COVID-19 in Turkey—which is a primary example of a developing country. (shrink)

Over the past 20 years, global ethics has come to be conceived in different ways. Two main tendencies can be distinguished. One asks from whence global ethics comes and defines ‘global ethics’ as arising from globalization. The other tendency is to ask whither global ethics must go and thus defines ‘global ethics’ as a destination, namely arriving at a comprehensive global ethic. I will note some types of discussion that (...) may have been wrongly excluded from the scope of global ethics by one or the other. In addition, I take notice of recent debates and concerns about risks that global ethics may become a neo-colonial activity. These concerns raise a further conceptual question. Should ‘global ethics’ be defined in a normative fashion, so as to exclude neo-colonial approaches that may be damaging to the credibility of global ethics? In response to these alternatives – whence vs. whither, descriptive vs. normative – I will propose a middle way. I begin by defining ‘global problems’ as those that will cause harm in the absence of cross-border cooperation. In a descriptive sense, any ethical statements about global problems should be included within the scope of global ethics. On the other hand, I will propose a more specific normative conception of the central task of global ethics: seeking reasonable and responsible agreement on global problems, agreement based on possibly diverse moral grounds. (shrink)

This article argues that outbreak preparedness and response should implement a ‘family presence’ policy for infected patients in isolation that includes the option of physical visits and care within the isolation facility under some conditions. While such a ‘physical family presence’ policy could increase infections during an outbreak and may raise moral dilemmas, we argue that it is ethically justified based on the least infringement principle and the need to minimize the harms and burdens of isolation as a restrictive measure. (...) Categorical prohibition of PFP during the course of an outbreak or epidemic is likely to result in unnecessary harms to patients and families, and violate values such as the moral commitments of families to care for each other. Supporting the option of PFP under particular circumstances, on the other hand, will least infringe these moral considerations. An additional reason for a family presence policy is that it may facilitate voluntary cooperation with isolation and other restrictive measures. We provide an analysis of these considerations for supporting modes of family presence during an outbreak emergency, before defending the riskier option of PFP in the isolation facility from plausible objections and concerns. (shrink)

The unprecedented outbreak of Ebola virus disease in West Africa has raised several novel ethical issues for global outbreak preparedness. It has also illustrated that familiar ethical issues in infectious disease management endure despite considerable efforts to understand and mitigate such issues in the wake of past outbreaks. To improve future global outbreak preparedness and response, we must examine these shortcomings and reflect upon the current state of ethical preparedness. To this end, we focus (...) our efforts in this article on the examination of one substantial area: ethical guidance in pandemic plans. We argue that, due in part to their focus on considerations arising specifically in relation to pandemics of influenza origin, pandemic plans and their existing ethical guidance are ill-equipped to anticipate and facilitate the navigation of unique ethical challenges that may arise in other infectious disease pandemics. We proceed by outlining three reasons why this is so, and situate our analysis in the context of the EVD outbreak and the threat posed by drug-resistant tuberculosis: different infectious diseases have distinct characteristics that challenge anticipated or existing modes of pandemic prevention, preparedness, response, and recovery, clear, transparent, context-specific ethical reasoning and justification within current influenza pandemic plans are lacking, and current plans neglect the context of how other significant pandemics may manifest. We conclude the article with several options for reflecting upon and ultimately addressing ethical issues that may emerge with different infectious disease pandemics. (shrink)

Genetically engineered (GE) insects, such as the GE OX513A Aedes aegypti mosquitoes, have been designed to suppress their wild-type populations so as to reduce the transmission of vector-borne diseases in humans. Apart from the ecological and epidemiological uncertainties associated with this approach, such biotechnological approaches may be used by individual governments or the global community of nations to avoid addressing the underlying structural, systemic causes of those infections... We discuss here key ethical questions raised by the use of (...) GE mosquitoes, with the aim of fostering discussion between the public, researchers, policy makers, healthcare organizations, and regulatory agencies at the local, national, and international levels. We affect that goal by outlining a procedural approach to decision-making about the use of the “biotechnology” that goes beyond “community engagement.” The protocol we advocate for entails informed deliberations and decision-making at the community level. It is designed to ensure that the voices of the marginalized and vulnerable groups that would be disproportionately affected by the decision are heard during the community-wide discussions. Moreover, we make the case that the values embedded in the risk assessment should be identified so that the community can make an informed decision about the use of GE insects. In addition, we advocate for the involvement of a variety of actors whose responsibility would be to ensure that the community has the opportunity to make an informed decision based on deliberations about the use of the “biotechnology.”. (shrink)

Disease in wildlife raises a number of issues that have not been widely considered in the bioethical literature. However, wildlife disease has major implications for human welfare. The majority of emerging human infectious diseases are zoonotic: that is, they occur in humans by cross-species transmission from animal hosts. Managing these diseases often involves balancing concerns with human health against animal welfare and conservation concerns. Many infectious diseases of domestic animals are shared with wild animals, (...) although it is often unclear whether the infection spills over from wild animals to domestic animals or vice versa. Culling is the standard means of managing such diseases, bringing economic considerations, animal welfare and conservation into conflict. Infectious diseases are also major threatening processes in conservation biology and their appropriate management by culling, vaccination or treatment raises substantial animal ethics issues. One particular issue of great significance in Australia is an ongoing research program to develop genetically modified pathogens to control vertebrate pests including rabbits, foxes and house mice. Release of any self-replicating GMO vertebrate pathogen gives rise to a whole series of ethical questions. We briefly review current Australian legal responses to these problems. Finally, we present two unresolved problems of general importance that are exemplified by wildlife disease. First, to what extent can or should 'bioethics' be broadened beyond direct concerns with human welfare to animal welfare and environmental welfare? Second, how should the irreducible uncertainty of ecological systems be accounted for in ethical decision making? (shrink)

Human Infection Studies have emerged as an important research approach with the potential to fast track the global development of vaccines and treatments for infectious diseases, including in low resource settings. Given the high level of burdens involved in many HIS, particularly prolonged residency and biological sampling requirements, it can be challenging to identify levels of study payments that provide adequate compensation but avoid ‘undue’ levels of inducement to participate. Through this embedded ethics study, involving 97 (...) healthy volunteers and other research stakeholders in a malaria HIS programme in Kenya, and using in-depth interviews, focus group discussions and observations during and after a malaria HIS, we give a grounded account of ethical issues emerging in relation to study payments in this setting. While careful community, national, international scientific and ethics review processes meant that risks of serious harm were highly unlikely, the levels of motivation to join HIS seen could raise concerns about study payments being too high. Particular value was placed on the reliability, rather than level, of study payment in this setting, where subsistence livelihoods are common. Study volunteers were generally clear about the study aims at the point of recruitment, and this knowledge was retained over a year later, although most reported experiencing more burdens than anticipated at enrolment. Strict study screening procedures, regular clinical and laboratory monitoring of volunteers, with prompt treatment with antimalarial at predetermined endpoints suggested that the risks of serious harm were highly unlikely. Ethical concerns emerged in relation to volunteers’ attempts to conceal symptoms, hoping to prolong residency periods and increase study payments; and volunteers making decisions that compromised important family relationships and personal values. Our findings support an interpretation that, although study volunteers were keen to join the study to access cash payments, they also paid attention to other features of the study and the general clinical research landscape, including levels of risk associated with study participation. Overall, our analysis shows that the ethical concerns emerging from the study payments can be addressed through practical measures, hinged on reducing burdens and strengthening communication, raising important issues for research policy and planning. (shrink)

This seminal collection on the ethical issues associated with infectious disease is the first book to correct bioethics’ glaring neglect of this subject. Timely in view of public concern about SARS, AIDS, avian flu, bioterrorism and antibiotic resistance. Brings together new and classic papers by prominent figures. Tackles the ethical issues associated with issues such as quarantine, vaccination policy, pandemic planning, biodefense, wildlife disease and health care in developing countries.

This issue of the Journal of Medical covers a range of ethical issues and care settings making the task of beginning to summarise these papers challenging. They reflect the diversity of our field, representing different branches of bioethics focussing on specific areas or topics using a variety of methodologies: but how do we categorise these branches of bioethics? What demarks one branch from another? And what function do such categorisations fulfil? From the early days of medical ethics we (...) now have a growing proliferation of different branches, from those with a more specific focus: clinical ethics, global ethics, nursing ethics, public health ethics for example, to a widening out, in terms of bioethics becoming the broader usage and medical ethics sitting within that. More recently, a new area of ethical focus has arisen, One Health, the subject of Johnson and Degeling’s article in this issue. They define One Health as follows: ‘One Health is generally construed as an integrated approach to understanding and managing disease. Although primarily associated with the prevention and control of Emerging Infectious Diseases, the approach is also relevant to dealing with endemic and zoonotic animal diseases, as well as securing food safety. In its most comprehensive form, it extends to fostering the health of humans, animals and their shared environments.’ This raises, in many ways, a different set of ethical concerns from those usually encountered in bioethics and medical ethics and this leads Johnson and Degeling to ask whether One Health merits having its own ‘ethical framework’. They use ethical frameworks in two senses: as value neutral deliberative tools and as embodying values, and consider how each usage could be applied in One Health. In terms of the first usage they state: ‘When ethical frameworks are regarded as a procedural tool then, the One Health perspective can broaden …. (shrink)

This seminal collection on the ethical issues associated with infectious disease is the first book to correct bioethics’ glaring neglect of this subject. Timely in view of public concern about SARS, AIDS, avian flu, bioterrorism and antibiotic resistance. Brings together new and classic papers by prominent figures. Tackles the ethical issues associated with issues such as quarantine, vaccination policy, pandemic planning, biodefense, wildlife disease and health care in developing countries.

Current practices of identifying and treating small indolent thyroid cancers constitute an important but in some ways unusual form of overdiagnosis. Overdiagnosis refers to diagnoses that generally harm rather than benefit patients, primarily because the diagnosed condition is not a harmful form of disease. Patients who are overdiagnosed with thyroid cancer are harmed by the psycho-social impact of a cancer diagnosis, as well as treatment interventions such partial or total thyroidectomy, lifelong thyroid replacement hormone, monitoring, surgical complications and other side (...) effects. These harms seem to outweigh any putative benefit of knowing about a cancer that would not have caused problems if left undiscovered. In addition to harms to patients, thyroid cancer overdiagnosis leads to significant opportunity costs at a societal level, due to costs of diagnosis and treatment. Unlike many other overdiagnosed cancers, accurate risk stratification is possible with thyroid cancer. At the individual patient level, use of this risk information might support informed choice and/or shared decision-making, as mandated by clinical ethics frameworks. And this approach might, to some extent, help to reduce rates of diagnosis and intervention. In practice, however, it is unlikely to stem the rising incidence and associated harms and costs of overdiagnosed thyroid cancer, especially in situations where health professionals have conflicts of interest. We argue in this article that thyroid cancer overdiagnosis may be usefully understood as a public health problem, and that some public health approaches will be readily justifiable and are more likely to be effective in minimising its harms. (shrink)

United States public health experts have long expressed concern about the prevalence of the human immunodeficiency virus among injection drug users. The United States has the largest reported IDU population in the world: 1.1 to 1.5 million. Recent estimates from the Centers for Disease Control and Prevention suggest that 50 percent of incident HIV infections occur among IDUs, with additional infections occurring among their sex partners and offspring. More than 33 percent of new AIDS cases occur in IDUs, their (...) sexual partners, and their children. Almost one half of all women diagnosed with AIDS in the United States are IDUS. Many of the remaining infected women were infected as a result of sex with a male IDU.While public health agencies, legislators, community leaders, and religious groups have engaged in vigorous debate over the merits of needle exchange programs as an intervention to reduce HIV transmission, the programs, some legal and some illegal, have been implemented in fifty-five cities across the country. (shrink)

The implementation of new methods of treating and preventing disease raises many question of both technical and moral character. Currently, many studies focus on developing a screening test for preeclampsia (PE), a disease complicating 2–8% of pregnancies, potentially causing severe consequences for pregnant women and their fetuses. The purpose is to develop a test that can identify pregnancies at high risk for developing PE sufficiently early in pregnancy to allow for prophylaxis. However, the question of implementing a screening test for (...) PE does not only involve an evaluation of technical feasibility and clinical efficacy, it also requires an analysis of how the test influences the conditions and choices for those tested. This study evaluates state-of-the-art techniques for preeclampsia screening in an ethical framework, pointing out the central areas of moral relevance within the context of such screening activity. Furthermore, we propose ethical guidelines that a screening programme for PE should meet in order to become an uncontroversial addition to prenatal health care. (shrink)

Neglected diseases are severe conditions that mainly affect the world's poorest people. Those suffering from neglected diseases are mostly suffering from tropical infections that have failed to receive priority in pharmaceutical research and development programs, as well as in public health policies aimed at improving availability and access to preventive, diagnostic and curative medicine. The World Health Organization has issued a number of documents directing attention to the plight affecting one third of the world's population, assisted by active (...) support from private organizations, notably the Bill and Melissa Gates Foundation, but the overall situation remains dismal. In the wake of major socioeconomic processes including globalization, steadily growing economic disparity, healthcare inequality, the instability created by rogue states and terrorism, as well as massive migration, and epidemic outbreaks, the features of neglected diseases have been changing. Neglected populations affected by tropical diseases are suffering increasingly from non-infectious degenerative conditions and disabilities due to untreated chronic maladies. Pockets of poverty and neglect can also be detected in high-income countries, contributing to the emergence of new diseases and the reemergence of infections believed to be disappearing such as tuberculosis and the measles. Included in the issues of neglect are rare diseases, mostly of genetic origin, affecting a small number of patients that suffer from multiple life-shortening functional impairment and organ defects. Effective medicines are extremely expensive, allegedly because research and development of appropriate drugs is resources and time consuming, requiring exorbitant prices to recoup investment from a small number of consumers. Bioethics has been tardy in addressing the suffering and destitution of neglected and rare diseases. Convinced that permanently repeated denunciations blunt the sensitivity towards suffering, whereas statistics are bloodless and unable to elicit commitment, this book attempts to explore a different strategy. In an upstream approach, bioethics needs to engage in ethnographic fieldwork that confronts and shares the context in which people suffer, vividly presenting what epidemiological research has blunted into statistical data. Additionally, a downstream approach is suggested, requiring bioethics to vigorously and openly denounce unethical biomedical and pharmaceutical research, misdeeds in registration and marketing of drugs, and misalignment of policies with the unmet healthcare needs of the destitute. More than being critical observers, bioethicists ought to shed lurking conflicts of interests and seek active participation in planning research and public healthcare practices aimed at improving the lives of medically neglected populations. (shrink)

A central tenet of medical ethics holds that it is permissible to perform a medical intervention on a competent individual only if that individual has given informed consent to the intervention. However, in some circumstances it is tempting to say that the moral reason to obtain informed consent prior to administering a medical intervention is outweighed. For example, if an individual’s refusal to undergo a medical intervention would lead to the transmission of a dangerous infectious disease to other (...) members of the community, one might claim that it would be morally permissible to administer the intervention even in the absence of consent. Indeed, as we shall discuss below, there are a number of examples of public health authorities implementing compulsory or coercive measures for the purposes of infectious disease control (IDC). The plausibility of the thought that non-consensual medical interventions might be justified when performed for the purpose of IDC raises the question of whether such interventions might permissibly be used to realize other public goods. In this article we focus on one possibility: whether it could be permissible to non-consensually impose certain interventions that alter brain states or processes through chemical or physical means on serious criminal offenders. We shall suggest that some such interventions might be permissible if they safely and effectively serve to facilitate the offender’s rehabilitation and thereby prevent criminal recidivism. (shrink)

Machine generated contents note: Preface; Introduction; Part I. Global Health, Definitions and Descriptions: 1. What is global health? Solly Benatar and Ross Upshur; 2. The state of global health in a radically unequal world: patterns and prospects Ron Labonte and Ted Schrecker; 3. Addressing the societal determinants of health: the key global health ethics imperative of our times Anne-Emmanuelle Birn; 4. Gender and global health: inequality and differences Lesley Doyal and Sarah Payne; 5. Heath (...) systems and health Martin McKee; Part II. Global Health Ethics, Responsibilities and Justice: Some Central Issues: 6. Is there a need for global health ethics? For and against David Hunter and Angus Dawson; 7. Justice, infectious disease and globalisation Michael Selgelid; 8. International health inequalities and global justice: toward a middle ground Norman Daniels; 9. The human right to health Jonathan Wolff; 10. Responsibility for global health? Allen Buchanan and Matt DeCamp; 11. Global health ethics: the rationale for mutual caring Solly Benatar, Abdallah Daar and Peter Singer; Part III. Analyzing Some Reasons for Poor Health: 12. Trade and health: the ethics of global rights, regulation and redistribution Meri Koivusalo; 13. Debt, structural adjustment and health Jeff Rudin and David Sanders; 14. The international arms trade and global health Salahaddin Mahmudi-Azer; 15. Allocating resources in humanitarian medicine Samia Hurst, Nathalie Mezger and Alex Mauron; 16. International aid and global health Anthony Zwi; 17. Climate change and health: risks and inequities Sharon Friel, Colin Butler and Anthony McMichael; 18. Animals, the environment and global health David Benatar; 19. The global crisis and global health Stephen Gill and Isabella Bakker; Part IV. Shaping the Future: 20. Health impact fund: how to make new medicines accessible to all Thomas Pogge; 21. Biotechnology and global health Hassan Masun, Justin Chakma and Abdallah Daar; 22. Food security and global health Lynn McIntyre and Krista Rondeau; 23. International taxation Gillian Brock; 24. Global health research: changing the agenda Tikki Pang; 25. Justice and research in developing countries Alex John London; 26. Values in global health governance Kearsley Stewart, Gerald T. Keusch and Arthur Kleinman; 27. Poverty, distance and two dimensions of ethics Jonathan Glover; 28. Teaching global health ethics James Dwyer; 29. Towards a new common sense: the need for new paradigms of global health Isabella Bakker and Stephen Gill; Index. (shrink)

ABSTRACT Public health communication campaigns have been credited with helping raise awareness of risk from chronic illness and new infectious diseases and with helping promote the adoption of recommended treatment regimens. Yet many aspects of public health communication interventions have escaped the scrutiny of ethical discussions. With the transference of successful commercial marketing communication tactics to the realm of public health, consideration of ethical issues becomes an essential component in the development and application of public health strategies. (...) Ethical issues in public health communication are explored as they relate to eight topics: ‘targeting’ and ‘tailoring’ public health messages to particular population segments; obtaining the equivalence of informed consent; the use of persuasive communication tactics; messages on responsibility and culpability; messages that apply to harm reduction; and three types of unintended adverse effects associated with public health communication activities that may label and stigmatise, expand social gaps, and promote health as a value. We suggest that an ethical analysis should be applied to each phase of the public health communication process in order to identify ethical dilemmas that may appear subtle, yet reflect important concerns regarding potential effects of public health communication interventions on individuals and society as a whole. (shrink)

Introduction Outbreaks of serious communicable infectious diseases remain a major global medical problem and force healthcare workers to make hard choices with limited information, resources and time. While information regarding physicians’ opinions about such dilemmas is available, research discussing students’ opinions is more limited. Methods Medical students were surveyed about their willingness to perform medical procedures on patients with communicable diseases as students and as physicians. Students were asked about their opinions regarding the duty to treat (...) in such cases. Results 74% of respondents felt that by deciding to enter medical school they were morally obliged to treat any patient despite the risks. Students’ willingness to treat as physicians is significantly higher than their willingness to treat as students. HIV was significantly the most tolerated disease with respect to performing mouth to mouth resuscitation. Among preclinical students, we found that willingness to treat during the later years is significantly greater than during the earlier years. Among clinical students, the opposite was observed. Discussion Students’ greater willingness to treat as physicians is mostly attributed to perceptions of higher obligations as a qualified doctor. There is greater but not total willingness to perform resuscitation on patients with HIV relative to other diseases. The increased willingness of preclinical students and the decreased willingness of clinical students both emphasise the importance of patient–physician communication and ethics studies during medical school. (shrink)

Mandeville and colleagues describe a fascinating case where Facebook was used to warn potential contacts that their acquaintance had a communicable disease (Mandeville et al., 2013). They are correct that this case raises important issues about social media, confidentiality and the prevention of harm. However, they underestimate both the dangers of overcommunication via Wall and Timeline postings (and Twitter) and the potential utility of Facebook in cases like this one. Increased awareness of Facebook functionality will allow more accurate targeting (...) of those at risk of infection, while also protecting the confidentiality of the index case. (shrink)

This paper aims to search the question ‘whether the ethical issues of infectious disease, which has been so long considered as a problem in the discipline of bioethics, can be brought under the purview of public health ethics’. To explore the problem I begin with a brief description of the evolution of bioethics. I elaborate the six reasons of neglecting the discussion of infectious diseases in early bioethics as highlighted by Selgelid (2005). Then I analyse (...) the view of Bayer and Fairchild (2004) that how infectious diseases by its own ethical questions, make the shift from the autonomy-centred bioethics to common welfare focused public health ethics. However, I would like to conclude that although the ethical discussion of infectious diseases makes a moral shift from the discipline of bioethics to public health ethics, the latter should not always be solely guided by the principle of beneficence to avoid harm for the sake of community welfare. Public health ethics needs to be guided by the balance of the four biomedical principals, such as beneficence, nonmaleficence, autonomy, and justice. (shrink)

Emerging infectious diseases (EIDs) remain a significant and dynamic threat to the health of individuals and the well-being of communities across the globe. Over the last decade, in response to these threats, increasing scientific consensus has mobilised in support of a One Health (OH) approach so that OH is now widely regarded as the most effective way of addressing EID outbreaks and risks. Given the scientific focus on OH, there is growing interest in the philosophical and ethical dimensions (...) of this approach, and a nascent OH literature is developing in the humanities. One of the key issues raised in this literature concerns ethical frameworks and whether OH merits the development of its very own ethical framework. In this paper, we argue that although the OH approach does not demand a new ethical framework (and that advocates of OH can coherently adhere to this approach while deploying existing ethical frameworks), an OH approach does furnish the theoretical resources to support a novel ethical framework, and there are benefits to developing one that may be lost in its absence. We begin by briefly explaining what an OH approach to the threats posed by EIDs entails before outlining two different ways of construing ethical frameworks. We then show that although on one account of ethical frameworks there is no need for OH to generate its own, there may be advantages for its advocates in doing so. (shrink)

Antimicrobial resistance (AMR) is a global public health disaster driven largely by antibiotic use in human health care. Doctors considering whether to prescribe antibiotics face an ethical conflict between upholding individual patient health and advancing public health aims. Existing literature mainly examines whether patients awaiting consultations desire or expect to receive antibiotic prescriptions, but does not report views of the wider public regarding conditions under which doctors should prescribe antibiotics. It also does not explore the ethical significance of public (...) views or their sensitivity to awareness of AMR risks or the standpoint (self-interested or impartial) taken by participants. Methods: An online survey was conducted with a sample of the U.S. public (n = 158). Participants were asked to indicate what relative priority should be given to individual patients and society-at-large from various standpoints and in various contexts, including antibiotic prescription. Results: Of the participants, 50.3% thought that doctors should generally prioritize individual patients over society, whereas 32.0% prioritized society over individual patients. When asked in the context of AMR, 39.2% prioritized individuals whereas 45.5% prioritized society. Participants were significantly less willing to prioritize society over individuals when they themselves were the patient, both in general (p = .001) and in relation to AMR specifically (p = .006). Conclusions: Participants’ attitudes were more oriented to society and sensitive to collective responsibility when informed about the social costs of antibiotic use and when considered from a third-person rather than first-person perspective. That is, as participants came closer to taking the perspective of an informed and impartial “ideal observer,” their support for prioritizing society increased. Our findings suggest that, insofar as antibiotic policies and practices should be informed by attitudes that are impartial and well-informed, there is significant support for prioritizing society. (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)

In a recent article, Haininget aloutline several ethical and regulatory considerations for polygenic risk scores (PRSs), which may expand current embryonic screening to include polygenic diseases and non-disease traits. I argue in this response that the authors overlook a few crucial issues that nations should address. For adult-onset diseases, regulations must not only account for predictive accuracy of PRSs but also establish the precise circumstances that warrant testing—such as a disease’s severity and the average age at which (...) symptoms manifest. I later stress the need for more consideration of how to educate patients on manageable diseases that their embryos are at risk of later developing. Required information must correct social biases without compromising genetic counsellors’ impartiality. Drawing on global approaches to other embryonic genetic tests, I advocate for frameworks that protect patients’ autonomy while addressing the unique uncertainties posed by PRSs. (shrink)

Drawing on recent bioethics literature on emerging infectious diseases, as well as the authors’ own previous analyses, this chapter addresses the ethical underpinnings of global health partnerships to combat emerging infectious disease. After an introduction to the topic, section “Introduction” proposes the twin ends of establishing structural justice and ensuring threshold human capabilities as key justice standards. It shows how these standards play a critical role in determining justice in global health partnerships. Section “Next Steps: (...) Global Health Partnerships” illustrates these justice standards by applying them to the coronavirus 2019 (COVID-19) pandemic. Section “Conclusion” models multi-level global health partnerships that build-in justice considerations and proposes next steps for pandemic preparedness. (shrink)

Vaccines are responsible for many global public health successes, such as the eradication of smallpox and significant reductions in other serious infections like diphtheria, pertussis, tetanus, polio and measles. However, mass vaccination has also been the subject of various ethical controversies for decades. Several factors need to be considered before any vaccine is deployed at national programme like the potential burden of disease in the country or region, the duration of the protection conferred, herd immunity in addition to individual (...) protection, vaccine-related risks, financing and the logistical feasibility of the large-scale vaccination. Moreover, several ethical dilemmas revolve around authority and mandates for vaccination, informed consent, benefits vs. risks, and disparities in access to vaccination. This review paper aims to elaborate the ethical issues involved in mass vaccination programme and present some additional challenges in the context of a resource-poor settings of public health in Bangladesh. (shrink)

This paper develops a general approach to how society should compensate for losses that individuals incur due to public health interventions aimed at controlling the spread of infectious diseases. The paper falls in three parts. The first part provides an initial introduction to the issues and briefly outlines five different kinds of public health interventions that will be used as test cases. They are all directed at individuals and aimed at controlling the spread of infectious (...) class='Hi'>diseases (1) isolation, (2) quarantine, (3) recommended voluntary social distancing, (4) changes in health care provision for asymptomatic carriers of multi-resistant microorganisms, and (5) vaccination. The interventions will be briefly described including the various risks, burdens and harms individuals who are subject to these interventions may incur. The second part briefly surveys current compensation mechanisms as far as any exist and argue that even where they exist they are clearly insufficient and do not provide adequate compensation. The third part will then develop a general framework for compensation for losses incurred due to public health interventions in the infectious disease context. This is the major analytical and constructive part of the paper. It first analyses pragmatic and ethical arguments supporting the existence of an obligation on the part of the state to compensate for such losses, and then considers whether this obligation can be defeated by (1) resource considerations, or (2) issues relating to personal responsibility. (shrink)

BackgroundCritical public health measures implemented to mitigate the spread of the novel coronavirus disease (COVID-19) pandemic have disrupted health research worldwide, including HIV prevention research. While general guidance has been issued for the responsible conduct of research in these challenging circumstances, the contours of the dueling COVID-19 and HIV/aids pandemics raise some critical ethical issues for HIV prevention research. In this paper, we use the recently updated HIV Prevention Trials Network (HPTN) Ethics Guidance Document (EGD) to situate and (...) analyze key ethical challenges related to the conduct of HIV prevention research during the COVID-19 pandemic as well as identify potential areas for refinement of the guidance document based on this unprecedented state of affairs.Main bodyNecessary actions taken for HIV prevention research studies due to the COVID-19 pandemic involve an array of ethical issues including those related to: (1) risk mitigation; (2) behavior change; (3) compounding vulnerability; (4) community engagement; (5) trial reopening; and 6) shifting research priorities.ConclusionsIn the context of the dueling HIV and COVID-19 global pandemics, research teams and sponsors must be nimble in responding to the rapidly changing environment by being sensitive to the associated ethical issues. The HTPN EGD provides a rich set of tools to help identify, analyze and address many of these issues. At the same time, future refinements of the HPTN EGD and other research ethics guidance could be strengthened by providing explicit advice regarding the ethical issues associated with disrupted research and the reopening of studies. In addition, additional consideration should be given to appropriately balancing domains of risk (e.g., physical versus social), addressing the vulnerability of research staff and community partners, and responding to un-anticipatable ancillary care needs of participants and communities. Appropriately addressing these issues will necessitate conceptual work, which would benefit from the careful documentation of the actual ethical issues encountered in research, the strategies implemented to overcome them, and their success in doing so. Throughout all of these efforts, it is critical to remember that the HIV pandemic not be forgotten in the rush to deal with the COVID-19 pandemic. (shrink)

This Open Access volume provides in-depth analysis of the wide range of ethical issues associated with drug-resistant infectious diseases. Antimicrobial resistance is widely recognized to be one of the greatest threats to global public health in coming decades; and it has thus become a major topic of discussion among leading bioethicists and scholars from related disciplines including economics, epidemiology, law, and political theory. Topics covered in this volume include responsible use of antimicrobials; control of multi-resistant hospital-acquired (...) infections; privacy and data collection; antibiotic use in childhood and at the end of life; agricultural and veterinary sources of resistance; resistant HIV, tuberculosis, and malaria; mandatory treatment; and trade-offs between current and future generations. As the first book focused on ethical issues associated with drug resistance, it makes a timely contribution to debates regarding practice and policy that are of crucial importance to global public health in the 21st century. (shrink)

Securitization of infectious diseases may involve suspension of ordinary human rights and liberties. In the event of an epidemic, therefore, it is important to limit the occasions upon which draconian disease control measures are implemented in the name of security. The term ‘security’, moreover, should not be used too loosely if it is to retain force and meaning in political discourse. It may be argued that the bar for disease securitization should be set high so that it is (...) limited to contexts involving rapidly spreading pathogens. Such an approach, however, would rule out securitization of more slowly spreading, endemic diseases such as HIV/AIDS. An advantage of characterizing HIV/AIDS as a security threat in developing countries, where the burden of the disease is concentrated, is that this is likely to mobilize resources needed to improve the situation there. That is, if HIV/AIDS is convincingly framed as a security threat, then governments may recognize self‐interested reasons to ramp up control measures. Following consideration of arguments for narrow (excluding HIV/AIDS) versus broad (including HIV/AIDS) conceptions of security, we conclude that the legitimacy of ‘securitizing’ HIV/AIDS ultimately turns on empirical and semantic issues, and we emphasize the importance of distinguishing (1) the nature of the threat posed by HIV/AIDS and (2) the measures required to address that threat. (shrink)

Photo ID 71252867© Stepan Popov| Dreamstime.com Abstract While Medical Assistance in Dying (MAiD) has been legalized in Canada since 2016, it still excludes eligibility for persons who have mental illness as a sole underlying medical condition. This temporary exclusion was set to expire on March 17th, 2024, but was set 3 years further back by the Government of Canada to March 17th, 2027. This paper presents a critical appraisal of the case of MAiD for individuals with mental illness as the (...) sole underlying medical condition through the analysis of three ethical theories: principlism, deontology, and utilitarianism. Through evidence and discussion, it will be demonstrated that MAiD, in this context, may be ethically justifiable on the grounds of upholding human rights, protecting dignity, and minimizing suffering. Introduction In June of 2016, Medical Assistance in Dying (MAiD) was legalized in Canada.[1] Throughout the first six years, a temporary exclusion of eligibility for persons suffering solely from mental illness was extended.[2] The exclusion of mental illness as a sole underlying medical condition was set to expire on March 17, 2024.[3] However, on February 1, 2024, just over a month before the set expiration, the Government of Canada once again extended the exclusion, this time setting it back three years to March 17, 2027. There are currently several countries that allow MAiD for mental illness, including Belgium, the Netherlands, and Luxembourg.[4] Some countries, like Spain,[5] do not give specific guidance, leaving the matter under discussion by ethicists and courts. In these countries, there are specific (although different) requirements for the process; overall, for mental illness, the illness must be verifiable and not simply related to a perception of satisfaction with the length of life. This extension ignited discussion on whether MAiD for persons who have mental illness as a sole underlying medical condition in Canada is ethically acceptable. As a complex, multi-faceted, and interdisciplinary issue, ethicists assessing MAiD must take into account various moral obligations and considerations. This paper analyses MAiD in this context through the application of three ethical theories: principlism, deontology, and utilitarianism. This paper concludes that, based on the current evidence and knowledge of this developing situation, MAiD for persons with mental illness in Canada may be ethically justified on the grounds of upholding human rights, labour obligations, and dignity. Through the exploration of research and discussions, it will be demonstrated that society at large ought to protect liberty and act towards relieving suffering, thereby supporting the potential eligibility of MAiD for persons who have mental illness. Principlism: The Capacity and Ability to Assess and Decide for One’s Own Life Principlism is the application of four principles: autonomy, beneficence, non-maleficence, and justice. Principlism supports permitting MAiD for mental illness due to the importance of autonomy in decision-making, equitable and just practices for MAiD assessors, and reducing suffering for patients and their family member(s) and/or friend(s). Carter v. Canada, the Canadian Supreme Court ruling of 2015—which changed Canadian law to allow for MAiD—held that the prohibition of MAiD infringed on Canadians’ right to “life, liberty, and the security of the person.” In a unanimous decision, the Supreme Court of Canada decided that the criminal prohibition of MAiD violates the Canadian Charter of Rights and Freedoms.[6] The Court concluded that the criminal law prohibiting MAiD interfered with people’s autonomy and dignity, which are protected by the rights of liberty and security of the person.[7] The ruling emphasized that Canada’s constitution reflects the fundamental importance of individual autonomy in personal decision-making. Research provides evidence that MAiD improves autonomy: A study among psychiatric patients found that 8 of 48 psychiatric patients said the mere option of accessing MAiD was enough to assess their future options for living wholly.[8] These findings complement a study entailing interviews with 30 adults who have mental illness, which emphasized that the ability to access MAiD allows individuals to analyze their quality of life, envision their desired future, and make decisions accordingly.[9] Although not all participants agreed that mental illness as the only underlying medical condition was appropriate for MAiD eligibility, many participants agreed that patient autonomy in decision-making was paramount and should be respected. However, autonomy as an ethical principle does not immediately grant all persons with mental illness the option to access MAiD. There are multiple eligibility criteria for those who wish to receive MAiD, which still must be approved and assessed. Currently, eligibility criteria for MAiD states that individuals must “give informed consent to receive MAiD, meaning that the person has consented to receiving MAiD after they have received all information needed to make this decision.”[10] Consent requires capability or capacity, which is the ability to understand relevant information, appreciate its potential consequences, and make an informed decision for oneself.[11] Like for many other diseases, disabilities, and conditions, patient capability is determined on a case-by-case basis.[12] Given the stigma surrounding those struggling with mental health, this thorough case-by-case examination of an individual patient’s capability and capacity without prejudice or partiality should lead to equitable and fair treatment. Without appropriate testing, those with mental illness could be wrongly stripped of their decision-making power. Arguments against MAiD for those with mental illness have raised concerns about the potential for individuals to harm themselves and others. A survey of MAiD providers demonstrated that physicians believed that the bereavement experience following MAiD is challenging and profoundly distinct and that bereavement support for all members involved should be required.[13] However, while watching one die (of MAiD) may cause harm to their families, friends, and support system at large, it is also important to recognize that watching someone suffer and struggle through their mental health journey also poses significant harm. Qualitative studies in Ontario, Canada, have interviewed family members of persons with mental illness as a sole medical condition, and interviewees shared that witnessing the illness and its impacts on their close one's lives was a very difficult experience.[14] As it relates to MAiD, participants emphasized that those living with mental illness are in the best position to understand their own pain and suffering and, in turn, make their own decisions about relief.[15] In an interview, a MAiD provider stated that MAiD may provide less suffering and more peace, and that, although it “depends on the family,... usually the family is more prepared and at peace.”[16] On the contrary, a person who has mental illness may perceive choosing MAiD as beneficial to their family member(s) and/or friend(s). Among those who died by MAiD in 2021, 35.7 percent reported that they perceived themselves as a burden on their family and friends.[17] While some authors report their concerns regarding such social burden as a potential driving factor for MAiD requests, others report that there are other additional burdens associated with requesting MAiD that may be financial, societal, and personal.[18] As such, the extension of MAiD eligibility to those with mental illness will likely only allow a small number of people to be granted MAiD.[19] Many others will be diverted to appropriate services and treatments. Patients’ decision to choose MAID noted their ability to make choices about their own care, reflecting the value of autonomy.[20] Although it is difficult to determine what is good for families in individual cases, MAiD presents an option that is both beneficent and non-maleficent. Therefore, these arguments satisfy the principles which do not necessarily conflict with MAiD. Deontology: The Duty to Recognize Vulnerability and Relieve Suffering The argument here begins with the fundamental focus of deontology—that moral duty lies in an action rather than in its consequences. Further discussion is required to analyze the impact of MAiD on healthcare workers. The Canadian Medical Association (CMA) Code of Ethics and Professionalism requires physicians to abide by virtues, commitments, and responsibilities in delivering health care and service.[21] The code states that “a compassionate physician recognizes suffering and vulnerability, … and alleviate[s] the patient’s suffering.”[22] In the context of MAiD for persons with mental illness as a sole underlying medical condition, vulnerabilities could be wide in range. Many Canadians are concerned with the interaction between mental health and other social determinants of health, such as the lack of medical, disability, financial, housing, and social support and resources.[23] As a result, another layer to the ethical issue arises: Does permitting MAiD for mental illness treat the symptoms of the issue rather than the root problem itself (social, economic, and systemic inequities)? Some argue against MAiD, stating that the nation should first focus on developing better quality care and service.[24] Others support MAiD as a potential harm reduction approach, given that most of these unjust conditions require a higher level of long-term structural and public policy overhaul.[25] The CMA Code also calls upon physicians to recognize and alleviate patients’ suffering. Some argue that while physicians and medical professionals do work to relieve suffering, they are trained to do so through a primary care-based diagnose-and-treat approach.[26] Studies that have captured Canadian physicians’ experiences providing MAiD report that, although physicians stated that the work was rewarding, it came with many challenges, including strained relationships with coworkers, increased workload, and inadequate compensation.[27] Physicians report that a part of the problem is that MAiD rules are written by lawyers and experts who are removed from its reality in medical practice. As a result, there is a lack of clarity surrounding practice norms and a lack of support for physicians.[28] Thus, while healthcare practitioners have a duty to relieve patients’ suffering, they should feel adequately trained and supported in doing so. If physicians and healthcare professionals recognize vulnerability and relieve suffering, then they should act accordingly, regardless of potential associations or outcomes. Making persons with mental illness eligible for MAiD ensures that treatment to relieve their suffering is available. However, it is imperative that there are sufficient resources and support available to healthcare professionals to ensure that they feel prepared and supported to provide MAiD, should they wish to do so. Utilitarianism: Minimizing Intolerable Suffering and Dying with Dignity Overall, utilitarianism is largely concerned with the greatest happiness principle—to increase the amount of happiness for the greatest number of people. So far, this paper has analyzed individual, family, and practitioner-based ethical considerations. But if MAiD were to be extended to those with mental illness as a singular underlying medical condition, what implications would this have for the world and society at large? There is a global drive toward authorizing organized ending of life, with an increasing number of countries legalizing MAiD.[29] The medical system is generally seen as a safe and appropriate system to carry out MAiD, especially when suicide and self-harm are regarded as “alternatives.” Yet despite these worldwide efforts, many argue through the theory of utilitarianism that the inability to see long-term consequences renders MAiD a premature solution, particularly for those who are unable or unwilling to seek other forms of potentially healing treatment or for those who may undergo MAiD only for a technological innovation or biomedical advancement to later come along as a potential cure.[30] While it is true that MAiD does not prevent these “premature deaths,” it is also true that it does not claim to.[31] MAiD provides an option to alleviate intolerable suffering. Some individuals with severe mental illness do describe their condition as intolerable suffering. MAiD is seen as an option to minimize suffering. It can also be seen as a way to die with dignity and relief.[32] While predicting outcomes is difficult, extending MAiD eligibility for persons experiencing mental illness does not undermine its ability to end suffering. It allows eligible individuals to take charge of their health, their life, and their future. Conclusion Based on the current evidence, allowing MAiD for persons with mental illness as their sole underlying medical condition presents as an ethically justifiable action. The right to self-determination and fair accessibility demonstrates that there is more harm done by prohibiting MAiD for mental illness than allowing it. Such liberty is a right, and in the context of relieving suffering, it is a duty that healthcare workers must uphold, although the ability to opt out of providing MAiD is well established. Thus, to recognize vulnerability and relieve suffering means to provide methods, such as MAiD, for those deeply impacted by mental illness. These justifications stand at both the individual level and for society at large. Nevertheless, it remains imperative to take an upstream approach that addresses the social determinants of health and aims to prevent mental illness and promote long-term, beneficial social change for those suffering, struggling, and vulnerable in our communities. - [1] Jaro Kotalik and David W. Shannon, Medical Assistance in Dying (MAID) in Canada Key Multidisciplinary Perspectives, 1st ed. 2023., The International Library of Bioethics, 104 (Cham: Springer International Publishing, 2023), https://doi.org/10.1007/978-3-031-30002-8. [2] Department of Justice Government of Canada, “Canada’s Medical Assistance in Dying (MAID) Law,” February 21, 2024, https://www.justice.gc.ca/eng/cj-jp/ad-am/bk-di.html. [3] Health Canada, “Final Report of the Expert Panel on MAiD and Mental Illness,” transparency - other, May 13, 2022, https://www.canada.ca/en/health-canada/corporate/about-health-canada/public-engagement/external-advi sory-bodies/expert-panel-maid-mental-illness/final-report-expert-panel-maid-mental-illness.html. [4] Federal Public Service (FPS) Health Belgium, “Federal Commission for the Control and Evaluation of Euthanasia,” n.d., https://consultativebodies.health.belgium.be/en/advisory-and-consultative-bodies/federal-commission- control-and-evaluation-euthanasia.; Government of Netherlands, “Is Euthanasia Allowed in the Netherlands?,” n.d., https://www.government.nl/topics/euthanasia/is-euthanasia-allowed.; “Information on Requesting Euthanasia or Assisted Suicide,” n.d., https://guichet.public.lu/en/citoyens/sante/fin-vie/euthanasie/euthanasie-assistance-suicide.html. [5] Luis Espericueta, First official report on euthanasia in Spain: A comparison with the Canadian and New Zealand experiences, Medicina Clínica (English Edition), Volume 161, Issue 10, 2023, Pages 445-447, ISSN 2387-0206, https://doi.org/10.1016/j.medcle.2023.06.021. [6] Government of Canada, “The Canadian Charter of Rights and Freedoms,” March 15, 2021, https://www.justice.gc.ca/eng/csj-sjc/rfc-dlc/ccrf-ccdl/. [7] Supreme Court of Canada, “Carter v. Canada,” Constitutional Law, 2015, https://scc-csc.lexum.com/scc-csc/scc-csc/en/item/14637/index.do.; Kotalik and Shannon, Medical Assistance in Dying (MAID) in Canada Key Multidisciplinary Perspectives. [8] Karandeep Sonu Gaind, “What Does ‘Irremediability’ in Mental Illness Mean?,” Canadian Journal of Psychiatry. Revue Canadienne de Psychiatrie 65, no. 9 (September 2020): 604–6, https://doi.org/10.1177/0706743720928656; Lieve Thienpont et al., “Euthanasia Requests, Procedures and Outcomes for 100 Belgian Patients Suffering from Psychiatric Disorders: A Retrospective, Descriptive Study,” BMJ Open 5, no. 7 (July 27, 2015): e007454, https://doi.org/10.1136/bmjopen-2014-007454. [9] Hamer Bastidas-Bilbao et al., “Walking Alongside: Views of Family Members on Medical Assistance in Dying for Mental Illness as the Sole Underlying Medical Condition,” Qualitative Health Research 33 (September 29, 2023), https://doi.org/10.1177/10497323231197365. [10] Government of Canada, “Canada’s Medical Assistance in Dying (MAID) Law.” [11] Commission sur les soins de fin de vie, “Les conditions de l’admissibilité à l’aide médicale à mourir au Québec: la constance dans l’évolution de la loi concernant les soins de fin de vie,” June 9, 2023, https://csfv.gouv.qc.ca/ fileadmin/docs/autres_rapports/csfv_lcsfv_conditions_ amm_2023-06-29.pdf.; Trudo Lemmens, “When Death Becomes Therapy: Canada’s Troubling Normalization of Health Care Provider Ending of Life,” The American Journal of Bioethics 23, no. 11 (November 2, 2023): 79–84, https://doi.org/10.1080/15265161.2023.2265265. [12] Justine Dembo, Udo Schuklenk, and Jonathan Reggler, “‘For Their Own Good’: A Response to Popular Arguments Against Permitting Medical Assistance in Dying (MAID) Where Mental Illness Is the Sole Underlying Condition,” Canadian Journal of Psychiatry. Revue Canadienne De Psychiatrie 63, no. 7 (July 2018): 451–56, https://doi.org/10.1177/0706743718766055. [13] Konia Trouton et al., “Attitudes and Expectations Regarding Bereavement Support for Patients, Family Members, and Friends: Findings from a Survey of MAID Providers,” British Columbia Medical Journal 62, no. 1 (2020). [14] Bastidas-Bilbao et al., “Walking Alongside.” [15] Bastidas-Bilbao et al. [16] Trouton et al., “Attitudes and Expectations Regarding Bereavement Support for Patients, Family Members, and Friends: Findings from a Survey of MAID Providers,” 2020. [17] Ramona Coelho et al., “The Realities of Medical Assistance in Dying in Canada,” Palliative & Supportive Care 21, no. 5 (October 2023): 871–78, https://doi.org/10.1017/S1478951523001025; Health Canada, “Third Annual Report on Medical Assistance in Dying in Canada 2021,” report on plans and priorities;transparency - other, July 26, 2022, https://www.canada.ca/en/health-canada/services/publications/health-system-services/annual-report-me dical-assistance-dying-2021.html; Lemmens, “When Death Becomes Therapy.” [18] Coelho et al., “The Realities of Medical Assistance in Dying in Canada,” October 2023.; Bastidas-Bilbao et al., “Walking Alongside.” [19] Olivia Stefanovich, “Opposition Parties Call for Indefinite Pause to MAID Expansion for Mental Illness | CBC News,” Canadian Broadcasting Corporation, January 28, 2024, https://www.cbc.ca/news/politics/special-joint-committee-maid-mental-illness-report-1.7095679; Benjamin Lopez Steven, “Number of Assisted Deaths Jumped More than 30 per Cent in 2022, Report Says | CBC News,” Canadian Broadcasting Corporation, October 27, 2023, https://www.cbc.ca/news/politics/maid-canada-report-2022-1.7009704. [20] Hamer Bastidas-Bilbao et al., “Searching for Relief from Suffering: A Patient-Oriented Qualitative Study on Medical Assistance in Dying for Mental Illness as the Sole Underlying Medical Condition,” Social Science & Medicine 331 (August 1, 2023): 116075, https://doi.org/10.1016/j.socscimed.2023.116075. [21] Canadian Medical Association, “Canadian Medical Association Code of Ethics and Professionalism” (Canada: Canadian Medical Association, December 8, 2018), https://policybase.cma.ca/link/policy13937. [22] Canadian Medical Association. [23] Coelho et al., “The Realities of Medical Assistance in Dying in Canada,” October 2023; Stefanovich, “Opposition Parties Call for Indefinite Pause to MAID Expansion for Mental Illness | CBC News.” [24] John Paul Tasker, “Liberal Government Promoting a ‘culture of Death’ with Medical Assistance in Dying Law, Conservative MP Says | CBC News,” Canadian Broadcasting Corporation, March 6, 2023, https://www.cbc.ca/news/politics/culture-of-death-medical-assistance-in-dying-mental-illness-1.67695 04. [25] Coelho et al., “The Realities of Medical Assistance in Dying in Canada,” October 2023; Kayla Wiebe and Amy Mullin, “Choosing Death in Unjust Conditions: Hope, Autonomy and Harm Reduction,” Journal of Medical Ethics, April 26, 2023, https://doi.org/10.1136/jme-2022-108871. [26] Ramona Coelho et al., “The Realities of Medical Assistance in Dying in Canada,” Palliative & Supportive Care 21, no. 5 (October 2023): 871–78, https://doi.org/10.1017/S1478951523001025. [27] Konia Trouton et al., “Attitudes and Expectations Regarding Bereavement Support for Patients, Family Members, and Friends: Findings from a Survey of MAID Providers,” British Columbia Medical Journal 62, no. 1 (2020), https://bcmj.org/articles/attitudes-and-expectations-regarding-bereavement-support-patients-family-m embers-and.; William Robert Nielsen, “MAiD in Canada: Ethical Considerations in Medical Assistance in Dying,” Canadian Journal of Bioethics 4, no. 2 (December 9, 2021): 93–98, https://doi.org/10.7202/1084456ar. [28] Coelho et al., “The Realities of Medical Assistance in Dying in Canada,” October 2023. [29] Lemmens, “When Death Becomes Therapy.” [30] William Robert Nielsen, “MAiD in Canada: Ethical Considerations in Medical Assistance in Dying,” Canadian Journal of Bioethics 4, no. 2 (December 1, 2021): 93–98, https://doi.org/10.7202/1084456ar. [31] Steven, “Number of Assisted Deaths Jumped More than 30 per Cent in 2022, Report Says | CBC News.” [32] A. Plaisance et al., “Quebec Population Highly Supportive of Extending Medical Aid in Dying to Incapacitated Persons and People Suffering Only from a Mental Illness: Content Analysis of Attitudes and Representations,” Ethics, Medicine and Public Health 21 (April 1, 2022): 100759, https://doi.org/10.1016/j.jemep.2022.100759. (shrink)

Globalization, an outgrowth of technology, while informing us about people throughout the world, also raises our awareness of the extreme economic and social disparities that exist among nations. As part of a global discipline, nurses are vitally interested in reducing and eliminating disparities so that better health is achieved for all people. Recent literature in nursing encourages our discipline to engage more actively with social justice issues. Justice in health care is a major commitment of nursing; thus questions (...) in the larger sphere of globalization, justice and ethics, are our discipline's questions also. Global justice, or fairness, is not an issue for some groups or institutions, but a deeper human rights issue that is a responsibility for everyone. What can we do to help reduce or eliminate the social and economic disparities that are so evident? What kind of ethical milieu is needed to address the threat that globalization imposes on justice and fairness? This article enriches the conceptualization of globalization by investigating recent work by Schweiker and Twiss. In addition, I discuss five qualities or characteristics that will facilitate the development of a viable and just global ethic. A global ethic guides all people in their response to human rights and poverty. Technology and business, two major forces in globalization that are generally considered beneficial, are critiqued as barriers to social justice and the common good. To turn human nature into humanity and righteousness is like turning the willow into cups and bowls.The book of Mencius. (shrink)

In recent years, CRISPR-Cas9 has become one of the simplest and most cost-effective genetic engineering techniques among scientists and researchers aiming to alter genes in organisms. As Zika came to the fore as a global health crisis, many suggested the use of CRISPR-Cas9 gene drives in mosquitoes as a possible means to prevent the transmission of the virus without the need to subject humans to risky experimental treatments. This paper suggests that using gene drives or other forms of genome (...) editing in nonhumans (like mosquitos) for the purposes of disease prevention raises important issues about informed consent. Additionally, it examines the consequences this line of inquiry could have for the use of gene drives as a tool in public health and suggests that the guidance offered by informed consent protocols could help the scientific community deploy gene drives in a way that ensures that ongoing research is consistent with our ethical priorities. (shrink)

Advances in neuroscience and other disciplines are producing large-scale brain data consisting of datasets from multiple organisms, disciplines, and jurisdictions in different formats. However, due to the lack of an international data governance framework brain data is currently being produced under various contextual ethical and legal principles which may influence key stakeholders involved in the generation, collection, processing and sharing of brain data thereby raising ethical and legal challenges. In addition, despite the demand for a brain data governance framework (...) that accounts for culture, there is a gap in empirical research and actions to understand how key stakeholders around the world view these issues using neuroscientists who are affected by these ethical and legal principles. Therefore, using the research question how do ethical and legal principles influence data governance in neuroscience? we attempt to understand the perceptions of key actors on the principles, issues and concerns that can arise from brain data research. We carried out interviews with 21 leading international neuroscientists. The analytical insights revealed key ethical and legal principles, areas of convergence, visibility, and the contextual issues and concerns that arise in brain data research around these principles. These issues and concerns circulate around intimately connected areas which include ethics, human rights, regulations, policies and guidelines, and participatory governance. Also, key contextual insights around animal research and ethics were identified. The research identifies key principles, issues, and concerns that need to be addressed in advancing the development of a framework for global brain data governance. By presenting contextual insights from neuroscientists across regions, the study contributes to informing discussions and shaping policies aimed at promoting responsible and ethical practices in brain data research. The research answers the call for a cross cultural study of global brain data governance and the results of the study will assist in understanding the issues and concerns that arise in brain data governance. (shrink)

Ensuring that countries have adequate research capacities is essential for an effective and efficient response to infectious disease outbreaks. The need for ethical principles and values embodied in international research ethics guidelines to be upheld during public health emergencies is widely recognized. Public health officials, researchers and other concerned stakeholders also have to carefully balance time and resources allocated to immediate treatment and control activities, with an approach that integrates research as part of the outbreak response. Under such (...) circumstances, research “ethics preparedness” constitutes an important foundation for an effective response to infectious disease outbreaks and other health emergencies. A two-day workshop was convened in March 2018 by the World Health Organisation Global Health Ethics Team and the African coaLition for Epidemic Research, Response and Training, with representatives of National Ethics Committees, to identify practical processes and procedures related to ethics review preparedness. The workshop considered five areas where work might be undertaken to facilitate rapid and sound ethics review: preparing national ethics committees for outbreak response; pre-review of protocols; multi-country review; coordination between national ethics committees and other key stakeholders; data and benefit sharing; and export of samples to third countries. In this paper, we present the recommendations that resulted from the workshop. In particular, the participants recommended that Ethics Committees would develop a formal national standard operating procedure for emergency response ethical review; that there is a need to clarify the terminology and expectations of pre-review of generic protocols and agree upon specific terminology; that there is a need to explore mechanisms for multi-country emergency ethical consultation, and to establish procedures for communication between national ethics committees and other oversight bodies and public health authorities. In addition, it was suggested that ethics committees should request from researchers, at a minimum, a preliminary data sharing and sample sharing plan that outlines the benefit to the population from which data and samples are to be drawn. This should be followed in due time by a full plan. It is hoped that the national ethics committees, supported by the WHO, relevant collaborative research consortia and external funding agencies, will work towards bringing these recommendations into practice, for supporting the conduct of effective research during outbreaks. (shrink)

The National Health Service (NHS) was the first healthcare system globally to declare ambitions to become net carbon zero. To achieve this, a shift away from metered-dose inhalers which contain powerful greenhouse gases is necessary. Many patients can use dry powder inhalers which do not contain greenhouse gases and are equally effective at managing respiratory disease. This paper discusses the ethical issues that arise as the NHS attempts to mitigate climate change. Two ethical issues that pose a barrier (...) to moving away from metered-dose inhalers are considered: patients who decline an inhaler with a smaller carbon footprint and increased cost. I argue that while a patient is not morally justified in refusing a more environmentally sustainable inhaler due to the expected harms, a doctor may still prescribe a metered-dose inhaler if they believe that switching without consent might undermine trust or substantially worsen the patient’s health. Turning to cost, I argue that the imperative to combat climate change means the NHS should accept small increased financial costs for lower carbon inhalers, even though this provides no additional direct benefit for the patient. I then go on to consider the implications of the preceding analysis for policy and practice. I argue for a policy that minimises the impact of inhalers on the climate by advocating for a principle of environmental prescribing and explore decision-making in practice. While the arguments here pertain primarily to inhalers, the discussion has broader implications for debates around healthcare’s responsibility to be environmentally sustainable. (shrink)

In a previous issue of Zygon (Carvalho 2007), I explored the role of scientists—especially those engaging the science-religion dialogue—within the arena of global equity health, world poverty, and human rights. I contended that experimental biologists, who might have reduced agency because of their professional workload or lack of individual resources, can still unite into collective forces with other scientists as well as human rights organizations, medical doctors, and political and civic leaders to foster progressive change in our world. In (...) this article, I present some recent findings from research on three emerging viruses—HIV, dengue, and rotavirus—to explore the factors that lead to the geographical expansion of these viruses and the increase in frequency of the infectious diseases they cause. I show how these viruses are generating problems for geopolitical stability, human rights, and equity health care for developing nations that are already experiencing a growing poverty crisis. I suggest some avenues of future research for the scientific community for the movement toward resolution of these problems and indicate where the science-religion field can be of additional aid. (shrink)

Abstract.In a previous issue of Zygon (Carvalho 2007), I explored the role of scientists—especially those engaging the science‐religion dialogue—within the arena of global equity health, world poverty, and human rights. I contended that experimental biologists, who might have reduced agency because of their professional workload or lack of individual resources, can still unite into collective forces with other scientists as well as human rights organizations, medical doctors, and political and civic leaders to foster progressive change in our world. In (...) this article, I present some recent findings from research on three emerging viruses—HIV, dengue, and rotavirus—to explore the factors that lead to the geographical expansion of these viruses and the increase in frequency of the infectious diseases they cause. I show how these viruses are generating problems for geopolitical stability, human rights, and equity health care for developing nations that are already experiencing a growing poverty crisis. I suggest some avenues of future research for the scientific community for the movement toward resolution of these problems and indicate where the science‐religion field can be of additional aid. (shrink)

In 2016, following pandemic influenza threats and the 2014–2016 Ebola virus disease outbreaks, the WHO developed a guidance document for managing ethical issues in infectious disease outbreaks. In this article, we analyse some ethical issues that have had a predominant role in decision making in response to the current COVID-19 pandemic but were absent or not addressed in the same ways in the 2016 guidance document. A pandemic results in a health crisis and social and political crises (...) both nationally and globally. The ethical implications of these global effects should be properly identified so that appropriate actions can be taken globally and not just in national isolation. Our analysis, which is a starting point to test the broader relevance of the 2016 WHO document that remains the only available guidance document applicable globally, concludes that the WHO guidance should be updated to provide reasoned and thoughtful comprehensive ethics advice for the sound management of the current and future pandemics. (shrink)

Issues of balancing data accessibility with ethical considerations and governance of a genomics research biobank, Generation Scotland, are explored within the evolving policy landscape of the past ten years. During this time data sharing and open data access have become increasingly important topics in biomedical research. Decisions around data access are influenced by local arrangements for governance and practices such as linkage to health records, and the global through policies for biobanking and the sharing of data with large-scale (...) biomedical research data resources and consortia. We use a literature review of policy relevant documents which apply to the conduct of biobanks in two areas: support for open access and the protection of data subjects and researchers managing a bioresource. We present examples of decision making within a biobank based upon observations of the Generation Scotland Access Committee. We reflect upon how the drive towards open access raises ethical dilemmas for established biorepositories containing data and samples from human subjects. Despite much discussion in science policy literature about standardisation, the contextual aspects of biobanking are often overlooked. Using our engagement with GS we demonstrate the importance of local arrangements in the creation of a responsive ethical approach to biorepository governance. We argue that governance decisions regarding access to the biobank are intertwined with considerations about maintenance and viability at the local level. We show that in addition to the focus upon ever more universal and standardised practices, the local expertise gained in the management of such repositories must be supported. A commitment to open access in genomics research has found almost universal backing in science and health policy circles, but repositories of data and samples from human subjects may have to operate under managed access, to protect privacy, align with participant consent and ensure that the resource can be managed in a sustainable way. Data access committees need to be reflexive and flexible, to cope with changing technology and opportunities and threats from the wider data sharing environment. To understand these interactions also involves nurturing what is particular about the biobank in its local context. (shrink)