Patient and citizen participation is now regarded as central to the promotion of sustainable health and health care. Involvement efforts create and encounter many diverse ethical challenges that have the potential to enhance or undermine their success. This article examines different expressions of patient and citizen participation and the support health ethics offers. It is contended that despite its prominence and the link between patient empowerment and autonomy, traditional bioethics is insufficient to guide participation efforts. In addition, the turn to (...) a “social paradigm” of ethics in examinations of biotechnologies and public health does not provide an account of values that is commensurable with the pervasive autonomy paradigm. This exacerbates rather than eases tensions for patients and citizens endeavoring to engage with health. Citizen and patient participation must have a significant influence on the way we do health ethics if its potential is to be fulfilled. (shrink)

There are two discourses that are used in connection with the provision of good healthcare: a rights discourse and a beneficial design discourse. Although the logical force of these two discourses overlaps, they have distinct and incompatible implications for practical reasoning about health policy. The language of rights can be interpreted as the ground of a well-designed healthcare system stressing the values of equality and inclusion, but it has less application when dealing with questions of cost-effectiveness. This difference reflects the (...) distinction between the deontological status of rights claims and a teleological approach presupposed in the language of beneficial design. However, the value of the separateness of persons contained in the discourse of rights can impose constraints on the adoption of a simple maximizing principle when thinking about the allocation of healthcare resources within a social contract for health. Throughout these issues are discussed by reference to the work of Peter Jones. (shrink)

The ever-debated question of triage and allocating the life-saving ventilator during the COVID-19 pandemic has been repeatedly raised and challenged within the ethical community after shortages propelled doctors before life and death decisions. The British Medical Association’s ethical guidance highlighted the possibility of an initial surge of patients that would outstrip the health system’s ability to deliver care “to existing standards,” where utilitarian measures have to be applied, and triage decisions need to maximize “overall benefit” In these emergency circumstances, triage (...) that “grades according to their needs and the probable outcomes of intervention” will prioritize or eliminate patients for treatment, and health professionals may be faced with obligations to withhold or withdraw treatments to some patients in favour of others. This piece is a response and extension to articles published on the manner of involvement for ethics and ethicists in pandemic triage decisions, particularly examining the ability and necessity of establishing triage committees to ameliorate scarce allocation decisions for physicians. (shrink)

Background Planning for the next pandemic influenza outbreak is underway in hospitals across the world. The global SARS experience has taught us that ethical frameworks to guide decision-making may help to reduce collateral damage and increase trust and solidarity within and between health care organisations. Good pandemic planning requires reflection on values because science alone cannot tell us how to prepare for a public health crisis. Discussion In this paper, we present an ethical framework for pandemic influenza planning. The ethical (...) framework was developed with expertise from clinical, organisational and public health ethics and validated through a stakeholder engagement process. The ethical framework includes both substantive and procedural elements for ethical pandemic influenza planning. The incorporation of ethics into pandemic planning can be helped by senior hospital administrators sponsoring its use, by having stakeholders vet the framework, and by designing or identifying decision review processes. We discuss the merits and limits of an applied ethical framework for hospital decision-making, as well as the robustness of the framework. Summary The need for reflection on the ethical issues raised by the spectre of a pandemic influenza outbreak is great. Our efforts to address the normative aspects of pandemic planning in hospitals have generated interest from other hospitals and from the governmental sector. The framework will require re-evaluation and refinement and we hope that this paper will generate feedback on how to make it even more robust. (shrink)

This paper offers a brief comment on Jennings’ preceding paper, focusing on the capacity of a republican approach to public health ethics to facilitate reconceptualization of the right to health in situations of limited resources through a relational reading.

A decade has passed since the mapping of the human genome—an event that paved the way for many new developments in biomedicine and related fields. In ethics, this milestone was accompanied by calls for changes in ruling ethical frameworks.

The authors co-organized (Snyder and Crooks) and gave a keynote presentation at (Turner) a conference on ethical issues in medical tourism. Medical tourism involves travel across international borders with the intention of receiving medical care. This care is typically paid for out-of-pocket and is motivated by an interest in cost savings and/or avoiding wait times for care in the patient’s home country. This practice raises numerous ethical concerns, including potentially exacerbating health inequities in destination and source countries and disrupting continuity (...) of care for patients. In this report, we synthesize conference presentations and present three lessons from the conference: 1) Medical tourism research has the potential for cross- or inter-disciplinarity but must bridge the gap between researchers trained in ethical theory and scholars unfamiliar with normative frameworks; 2) Medical tourism research must engage with empirical research from a variety of disciplines; and 3) Ethical analyses of medical tourism must incorporate both individual and population-level perspectives. While these lessons are presented in the context of research on medical tourism, we argue that they are applicable in other areas of research where global practices, such as human subject research and health worker migration, are occurring in the face of limited regulatory oversight. (shrink)

What are the respective roles and responsibilities of global, national, and local communities as well as individuals themselves to address health deprivations and avert health threats? This article offers the beginnings of a theory of global health justice, arguing for universal ethical norms (general duty) with shared global and domestic responsibility (specific duties) for health. It offers a global minimalist view I call ‘ provincial globalism ’ as a mean between nationalism and cosmopolitanism, in which a provincial consensus must accompany (...) a global consensus on health morality. This minimalist account asserts global and national duties to promote human flourishing and, more specifically, individuals’ central health capabilities. In this view, justice requires prioritizing responsibilities through shared health governance to reduce shortfall inequalities in central health capabilities — a general duty to reduce premature mortality and escapable morbidity. It examines the difficulties presented by the philosophical principles of connectedness, causality, remediation, partiality, and capacity in the allocation of responsibility for global health. It offers a theory of responsibility allocation based on a functional, health agency centered and homeostatic balanced understanding of the analytical components required to solve global health problems and parcels out roles and responsibilities at the global, national, local, and individual levels accordingly. Allocations of responsibility rest on the effectiveness and special obligations of different actors, respecting self-determination by groups and individuals and seeking voluntary commitments . This view understands that the remedy for global health problems must be sustainable to take nations and the global health community to a new global health equilibrium that remedies current problems and prepares for new health threats to come. (shrink)

Una de las cuestiones que debería preocupar más a la teoría de la justicia global es la enorme desigualdad de salud que hay en el mundo. En este artículo, se repasan las causas de la desigualdad global de salud y los argumentos éticos a favor y en contra de la necesidad de tratar dicha desigualdad desde la perspectiva de la justicia global. Tras rechazar los argumentos en contra tanto del libertarismo de derechas como del estatalismo, y tras exponer las críticas (...) tanto al lenguaje de los derechos humanos como a la propuesta poggeana de reducir los deberes de la justicia global a deberes morales negativos, defiendo la necesidad de partir de un criterio de justicia global suficientista y basado en los deberes morales positivos para afrontar la gravedad y la urgencia moral que suponen las desigualdades globales de salud. (shrink)

This article provides a concise overview of the history of scholarship on solidarity in Europe and North America. While recent decades have seen an increase in conceptual and scholarly interest in solidarity in North America and other parts of the Anglo-Saxon world, the concept is much more strongly anchored in Europe. Continental European politics in particular have given rise to two of the most influential traditions of solidarity, namely, socialism and Christian ethics. Solidarity has also guided important public instruments and (...) institutions in Europe. Despite the much stronger affinity of continental European societies to solidaristic thinking, we argue that solidarity has much to offer for addressing societal challenges on both sides of the Atlantic and beyond. After proposing a working definition of solidarity that highlights its utility for guiding policy and practice, we give an example of how a solidarity-based perspective can shape instruments for the governance of data use. (shrink)

As a result of increased interest in global health, more and more medical students and trainees from the.

This paper examines two strategies aimed at demonstrating that moral obligations to improve global health exist. The ‘humanitarian model’ stresses that all human beings, regardless of affluence or global location, are fundamentally the same in terms of moral status. This model argues that affluent global citizens’ moral obligations to assist less fortunate ones follow from the desirability of reducing disease and suffering in the world. The ‘political model’ stresses that the lives of the world's rich and poor are inextricably linked (...) because of harmful state-to-state actions and because of the currently existing transnational institutions. These institutions’ design at once secures the high standard of living of the affluent and reinforces the continued foreseeable—and avoidable—deprivation of many of the global poor; and these give rise to compensatory health-related moral obligations beyond borders. This paper argues that political reasoning is unsuitable for the crucial task of determining priority in the receipt of health aid. We conclude that in the context of global health ethics, political reasoning must be supplemented with, if not replaced by, humanitarian reasoning. (shrink)

Contemporary biomedical ethics and environmental ethics share a common ancestry in Aldo Leopold's and Van Rensselaer Potter's initial broad visions of a connected biosphere. Over the past five decades, the two fields have become strangers. Public health ethics, a new subfield of bioethics, emerged from the belly of contemporary biomedical ethics and has evolved over the past 25 years. It has moved from its traditional concern with the tension between individual autonomy and community health to a wider focus on social (...) justice and solidarity. Public health has a broad focus that includes individual, community, and environmental health. Public health ethics attends to these broad commitments reflected in the increasing concern with the connectedness of health of individuals to the health of populations, to the health of animals, to the health of the environment; it is well situated to reconnect all three “fields” of ethics to promote a healthier planet. (shrink)

Background Planning for the next pandemic influenza outbreak is underway in hospitals across the world. The global SARS experience has taught us that ethical frameworks to guide decision-making may help to reduce collateral damage and increase trust and solidarity within and between health care organisations. Good pandemic planning requires reflection on values because science alone cannot tell us how to prepare for a public health crisis. Discussion In this paper, we present an ethical framework for pandemic influenza planning. The ethical (...) framework was developed with expertise from clinical, organisational and public health ethics and validated through a stakeholder engagement process. The ethical framework includes both substantive and procedural elements for ethical pandemic influenza planning. The incorporation of ethics into pandemic planning can be helped by senior hospital administrators sponsoring its use, by having stakeholders vet the framework, and by designing or identifying decision review processes. We discuss the merits and limits of an applied ethical framework for hospital decision-making, as well as the robustness of the framework. Summary The need for reflection on the ethical issues raised by the spectre of a pandemic influenza outbreak is great. Our efforts to address the normative aspects of pandemic planning in hospitals have generated interest from other hospitals and from the governmental sector. The framework will require re-evaluation and refinement and we hope that this paper will generate feedback on how to make it even more robust. (shrink)

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

This paper examines the problem of dying alone in the context of no-visitors hospital policy during the COVID-19 pandemic. It critically analyses a rights-based solution, offering a democratized vi...

“Public health practice” consists of activities and Programs managed by public health agencies to promote health and prevent disease, injury, and disability. Some of these activities might be deemed to fit within the broad definition of “research” under federal regulations, known as the Common Rule, designed to protect human research subjects. The Common Rule defines research as “a systeniatic investigation, including research development, testing and evaluation, designed to develop or contribute to generalizable knowledge.” Public health activities that might under some (...) circumstances be considered research include disease reporting, review of medical records, surveys, interviews, focus groups, specimen collection, and laboratory testing.There are questions about the extent to which the Common Rule applies or was intended to apply to public health practice: and it has been suggested in any case that Common Rule regulation of public health practice may not be socially optimal for both practical and principled reasons. (shrink)

“Public health practice” consists of activities and Programs managed by public health agencies to promote health and prevent disease, injury, and disability. Some of these activities might be deemed to fit within the broad definition of “research” under federal regulations, known as the Common Rule, designed to protect human research subjects. The Common Rule defines research as “a systeniatic investigation, including research development, testing and evaluation, designed to develop or contribute to generalizable knowledge.” Public health activities that might under some (...) circumstances be considered research include disease reporting, review of medical records, surveys, interviews, focus groups, specimen collection, and laboratory testing.There are questions about the extent to which the Common Rule applies or was intended to apply to public health practice: and it has been suggested in any case that Common Rule regulation of public health practice may not be socially optimal for both practical and principled reasons. (shrink)

No one questions the importance of protecting human subjects of research, but over the past few years dissatisfaction has surfaced with the manner in which the protection is conferred by the federal regulatory system referred to as “The Common Rule. ” Some of the criticism surfaces in print. Some bubbles out anecdotally in conversations among researchers, with complaints about the review process being virtually inevitable whenever the topic arises. Like those in other disciplines that differ more or less dramatically from (...) the world of clinical medical research around which the Common Rule was conceptualized, public health researchers, particularly those working in official public health agencies, have experienced some tension and difficulty in adapting to the rules. The Centers For Disease Control and Prevention has adopted guidelines that require Common Rule review for “research” but not “practice” activities. (shrink)

No one questions the importance of protecting human subjects of research, but over the past few years dissatisfaction has surfaced with the manner in which the protection is conferred by the federal regulatory system referred to as “The Common Rule. ” Some of the criticism surfaces in print. Some bubbles out anecdotally in conversations among researchers, with complaints about the review process being virtually inevitable whenever the topic arises. Like those in other disciplines that differ more or less dramatically from (...) the world of clinical medical research around which the Common Rule was conceptualized, public health researchers, particularly those working in official public health agencies, have experienced some tension and difficulty in adapting to the rules. The Centers For Disease Control and Prevention has adopted guidelines that require Common Rule review for “research” but not “practice” activities. (shrink)

There is no cure or vaccine for HIV/AIDS. The only life-prolonging treatment available is antiretroviral (ARV) therapy. WHO estimates, however, that less than 5 percent of those who require treatment in developing countries currently enjoy access to these medicines. In Africa fewer than 50,000 people–less than 2 percent of the people in need–currently receive ARV therapy. These facts have elicited strongly divergent reactions, and views about the appropriate response to this crisis have varied widely.The intensity of the debate concerning access (...) to life-prolonging medicines for the treatment of HIV/AIDS, and the heated rhetoric with which they are often conducted, suggest that these disagreements may be rooted in deeper disagreements of value. It is not obvious, however, what disagreements of value are at stake in this debate. By analyzing the statements of scholars, public officials, activist organizations, and private sector representatives, each of whom may endorse very different policy recommendations on access to HIV/AIDS drugs, we have identified and created a typology of the different sources of disagreement in the debate. We conclude that the central disagreements concerning access to medicines arise from competing understandings of how responsibilities for bringing remedy to hardships should be allocated to different agents and institutions. A central lesson that emerges from our analysis is that thinking about “health equity” must extend beyond the explanation and justification of goals, values, and ideals, and engage more honestly with the difficult question of how responsibilities for bringing remedy to health crises should be allocated in complex social contexts. (shrink)

Application of egalitarian and prioritarian accounts of health resource allocation in low‐income countries have both been criticized for implying distribution outcomes that allow decreasing/undermining health gains and for tolerating unacceptable standards of health care and health status that result from such allocation schemes. Insufficient health care and severe deprivation of health resources are difficult to accept even when justified by aggregative efficiency or legitimized by fair deliberative process in pursuing equality and priority oriented outcomes. I affirm the sufficientarian argument that, (...) given extreme scarcity of public health resources in low‐income countries, neither health status equality between populations nor priority for the worse off is normatively adequate. Nevertheless, the threshold norm alone need not be the sole consideration when a country's total health budget is extremely scarce. Threshold considerations are necessary in developing a theory of fair distribution of health resources that is sensitive to the lexically prior norm of sufficiency. Based on the intuition that shares must not be taken away from those who barely achieve a minimal level of health, I argue that assessments based on standards of minimal physical/mental health must be developed to evaluate the sufficiency of the total resources of health systems in low‐income countries prior to pursuing equality, priority, and efficiency based resource allocation. I also begin to examine how threshold sensitive health resource assessment could be used in the Philippines. (shrink)