This essay examines the citizen's apparent agelessness that is foundational to liberal democratic theories. By engaging the notion of citizenship rights, Lanoix challenges this assumed perpetual adulthood and argues for a new way of conceptualizing the citizen. The broader notion of citizen as cohabitant allows for the changing relationship a citizen will have with her citizenship rights and accommodates individuals who are not self-governing but who, nonetheless, share a democratic space.

An ‘ideal’ health care system would be unencumbered by economic considerations and provide an ample supply of well-paid health care professionals who would supply culturally appropriate optimal health care to the level desired by patients. An ‘ideal’ health care system presupposes an ‘ideal’ society in which resources for all social goods are unlimited. Changes within health care systems occur both because of changes within the system and because of changes or demands in and by the ‘exterior environment’. Social systems must (...) be in a homeostatic balance. If one component fails to accommodate itself to other forces, needs and interests within the system, the system is imperiled. It is difficult to create a just health care system in an unjust society, just as it is difficult to practise truly ethical medicine in an ethically corrupt system. (shrink)

Alternative allocations of a fixed bundle of healthcare resources often involve significantly different indirect, non-health effects. The question arises whether these effects must figure in accounts of the conditions under which a distribution of healthcare resources is morally justifiable. In this article we defend a Scanlonian, affirmative answer to this question: healthcare resource managers should sometimes select an allocation which has worse direct, health-related effects but better indirect, nonhealth effects; they should do this when the interests served by such a (...) policy are more urgent than the healthcare interests better served by an alternative allocation. We note that there is a prima facie case for the claim that such benefits (and costs) are relevant—i.e. they are real benefits, and in other contexts our decisions can permissibly be guided by them. We then proceed to rebut three lines of argument that might be thought to defeat this prima facie case: they appeal to fairness, the Kantian Formula of Humanity as an End in Itself, and the equal moral worth of persons, respectively. (shrink)

This paper addresses two ways in which scarcity in health care turns up and three ways in which this dual condition of scarcity can be approached. The first approach is the economic approach, which focuses on the causes of cost-increase in health care and on developing various mechanisms of rationing and priority-setting in health care. The second approach is the justice approach, which interprets scarcity as one of the Humean ‹Circumstances of Justice.’ Whereas these approaches interpret scarcity as a given (...) fact, the third approach casts doubt on this interpretation. Rather, it interprets scarcity as a social, anthropological, and technologically induced construction of Modernity. This paper supports the theories of Hans Achterhuis, Ivan Illich, and Nicholas Xenos but also further elaborates their views with regard to health care by offering an approach to scarcity that interprets it as an economic translation of finitude. I argue that this approach, which entails a contemporary revaluation of the ancient Socratic attitude on human life and finitude, will be better able to deal with the pressing contemporary issues of setting limits on health care because it mitigates contemporary health care’s tendency toward infinity in meeting – and creating – health care needs. (shrink)

This article investigates what notions of “just health care” are found at three Swedish hospitals among health care personnel and whether these notions are relevant to what priorities are actually made. Fieldwork at all three hospitals and 114 in-depth interviews were conducted. Data have been subject to conceptual and ethical analysis and categorisation. According to our findings, justice is an important idea to health care personnel at the studied hospitals. Two main notions of just health care were found. The main (...) idea was the notion of “equal treatment according to need”, the basic idea being that differences in treatment should be justified by differences in needs. The competing idea that merit should affect the treatment received is occasionally encountered, the idea here being that patients, by acting irresponsibly, may no longer deserve to be treated strictly according to needs. In practice, priorities are made on grounds that only partly comply with the basic idea of justice in health care, as it is understood by staff at the studied hospitals. Exceptions are made due to regional differences, considerations of cost-effectiveness, economic incentives, tradition, the daily patient flow, research, private alternatives, patient influence and favouritism of health care personnel. (shrink)

Recent years have seen increased interest among 4E cognition scholars in physical disability, leading to the development of the EE-model of disability. This paper contributes to the literature on disability and 4E cognition in three key ways. First, it examines the relationship between the EE-model and social constructivist views that address the bodily reality of disablement, highlighting commonalities and distinctions. Second, it critiques the EE-model’s focus on individual strategies for expanding disabled persons’ affordance landscapes, arguing that disability policy should integrate (...) insights from both the EE-model and social constructivist approaches. Finally, it assesses the EE-model against the 'dogma of harmony'. We argue that while the EE-model’s focus on active human-environment collaboration is valuable, it can inadvertently perpetuate this dogma. We contend that integrating certain social constructivist insights can help the EE-model avoid the dogma of harmony. (shrink)

There is little debate regarding the acceptability of providing medical care to restore physical or mental health that has deteriorated below what is considered typical due to disease or disorder (i.e., providing “treatment”—for example, administering psychostimulant medication to sustain attention in the case of attention deficit disorder). When asked whether a healthy individual may undergo the same intervention for the purpose of enhancing their capacities (i.e., “enhancement”—for example, use of a psychostimulant as a “study drug”), people often express greater hesitation. (...) Building on prior research in moral philosophy and cognitive science, in this work, we ask why people draw a moral distinction between treatment and enhancement. In two experiments, we provide evidence that the accessibility of health-related interventions determines their perceived descriptive or statistical normality (Experiment 1), and that gains in descriptive normality for such interventions weaken the moral distinction between treatment and enhancement (Experiment 2). In short, our findings suggest that the tendency to draw a moral distinction between treatment and enhancement is driven, in part, by assumptions about descriptive abnormality; and raise the possibility that normalizing novel biomedical interventions by promoting access could undermine people’s selective opposition toward enhancement, rendering it morally comparable to treatment. (shrink)

Recent debate among bioethicists concerns the potential to enhance human beings’ physical or cognitive capacities by means of genetic, pharmacological, cybernetic, or surgical interventions. Between “transhumanists,” who argue for unreserved enhancement of human capabilities, and “bioconservatives,” who warn against any non-therapeutic manipulation of humanity’s natural condition, lie those who support limited forms of enhancement for the sake of individual and collective human flourishing. Many scholars representing these views also share a concern over the status and interests of human beings with (...) various types of cognitive and physical disabilities, some of which may be ameliorable by enhancement interventions. The question addressed in this paper is whether valuing the enhancement of human capabilities may be reconciled with valuing the existence and phenomenological experiences of human beings with various disabilities. Can we value enhanced capabilities without disvaluing those whose capabilities fall below a defined threshold of “normal function”? Furthermore, if certain forms of disability, particularly cognitive disabilities, negatively impact one’s flourishing, could the enhancement of one’s cognitive capacities through biotechnological means enhance one’s flourishing. (shrink)

Clinical ethics consultants (CECs) are not moral authorities. Standardization of CECs’ professional role does not confer upon them moral authority. Certification of particular CECs does not confer upon them moral authority (nor does it reflect such authority). Or, so we will argue. This article offers a distinctly Orthodox Christian response to those who claim that CECs—or any other academically trained bioethicist—retain moral authority (i.e., an authority to know and recommend the right course of action). This article proceeds in three parts. (...) First, we discuss recent movements toward the certification of CECs in the United States, focusing primarily on proposals and programs put forth by the American Society for Humanities and Bioethics (ASBH). Second, we outline two secular reasons to be concerned about the relevant trends toward certification. For one thing, certification is currently being advanced via political dominance, rather than gaining authority by reliance on rigorous philosophical argument or reason. For another, the trends operate on the assumption that there exists a secular, content-full, canonical, morality. There is no such morality. Next, we argue that Orthodox Christians should resist the current trends toward certification of CECs. Specifically, we unpack ways in which the ASBH’s certification program (and those like it) conflict with Orthodox claims about moral authority and the moral life more generally. We conclude that Orthodox Christians should resist the current certification trends. (shrink)

La justicia sanitaria ha sido entendida, tradicionalmente, apenas como la aplicación del modelo distributivo de la justicia social al campo de la salud. El objetivo del presente artículo consiste en analizar, a partir del enfoque de Iris Young sobre las “políticas de la diferencia”, otras nociones de justicia sanitaria, contenidas en las demandas de diferentes movimientos sociales de Argentina. En función del análisis mencionado, ha sido posible identificar cuatro nociones que, si bien presuponen aspectos vinculados con la distribución de recursos, (...) están, sin embargo, lejos de reducirse al modelo distributivo de la justicia. (shrink)

With by far the lowest population density in the United States, myriad challenges attach to healthcare delivery in Alaska. In the “Size, Population, and Accessibility” section, we characterize this geographic context, including how it is exacerbated by lack of infrastructure. In the “Distributing Healthcare” section, we turn to healthcare economics and staffing, showing how these bear on delivery—and are exacerbated by geography. In the “Health Care in Rural Alaska” section, we turn to rural care, exploring in more depth what healthcare (...) delivery looks like outside of Alaska’s major cities. This discussion continues in the “Alaska’s Native Villages” section, which specifically analyzes healthcare in Alaska’s indigenous villages, some of the smallest and most isolated communities in the United States. Though many of the ways we could improve Alaskan health care for Alaskan residents are limited by its unique features, the “Justice and Healthcare Delivery” and “Technology and Telemedicine” sections consider ways in which certain policies and technology—including telemedicine—could mitigate the challenges developed in previous sections. (shrink)

There has been much debate about whether the concept of disease articulated in Boorse’s biostatistical theory is value-neutral or value-laden. Here, I want to examine whether this debate matters. I suggest that there are two basic respects in which value-ladenness might be important: it could threaten either scientific legitimacy or moral permissibility. I argue that value-ladenness does not threaten the scientific legitimacy of our disease-concept because the concept makes little difference to the formulation and testing of scientific hypotheses. Likewise, even (...) if our disease-concept is value-laden, this does not show it is morally impermissible. To determine its permissibility, we must regard it as a tool to structure social institutions. Seen in that way, whether our disease-concept is morally permissible is a consequentialist matter and depends exquisitely on unanswered empirical questions. (shrink)

The cost of health care at the end of life accounts for a high proportion of total health care costs in the United States. The percentage of Medicare payments attributable to patients in their last year of life was 28.3% in 1978 and has remained substantially the same at 25.1% in 2006. This indicates how little progress has been made in containing these costs, though doing so will be important to promote a financially sustainable health care system. These expenditures also (...) highlight the prospect that efforts to reduce health care costs overall are likely to disproportionately affect the care patients receive at the end of life. (shrink)

Ethical debate surrounding human enhancement, especially by biotechnological means, has burgeoned since the turn of the century. Issues discussed include whether specific types of enhancement are permissible or even obligatory, whether they are likely to produce a net good for individuals and for society, and whether there is something intrinsically wrong in playing God with human nature. We characterize the main camps on the issue, identifying three main positions: permissive, restrictive and conservative positions. We present the major sub-debates and lines (...) of argument from each camp. The review also gives a flavor of the general approach of key writers in the literature such as Julian Savulescu, Nick Bostrom, Michael Sandel, and Leon Kass. (shrink)

In this paper I argue that, since institutions must reflect the societies in which they are placed, a socialist health-care system cannot be understood unless democratic socialism—which would assure all of basic necessities of existence, full education and health-care to all members of the community—is not incompatible with a flourishing market for other products. In contrasting single with multiple tiered health care systems, I suggest that a single tiered system in which all have equal access to health care and none (...) can buy more, is most consistent with the ideals of democratic socialism. (shrink)

Political theorists generally defend the moral importance of health care by appealing to its purported importance in promoting good health and saving lives. Recent research on the social determinants of health demonstrates, however, that health care actually does relatively little to promote good health or save lives in comparison with other social and environmental factors. This article assesses the implications of the social determinants of health literature for existing theories of health care justice, and outlines a new approach that can (...) justify publicly subsidized comprehensive health care despite its limited contribution to good health. Even if health care plays a relatively limited role in promoting good health, it remains morally important because of the care it provides to individuals. As such, it can be justified in terms of care ethics. When health care is justified primarily in terms of care rather than health, however, the goals of a just health-care system shift. The measure of a just health-care system is no longer strictly its ability to generate good health outcomes but also its ability to provide individuals with accessible, good quality daily care. This different focus has important consequences for the way we think about the institutions of a just health-care system as well as for the delivery and allocation of medical goods and services. (shrink)

One-third of all human lives end in early death from poverty-related causes. Most of these premature deaths are avoidable through global institutional reforms that would eradicate extreme poverty. Many are also avoidable through global health-system reform that would make medical knowledge freely available as a global public good. The rules should be redesigned so that the development of any new drug is rewarded in proportion to its impact on the global disease burden (not through monopoly rents). This reform would bring (...) drug prices down worldwide close to their marginal cost of production and would powerfully stimulate pharmaceutical research into currently neglected diseases concentrated among the poor. Its feasibility shows that the existing medical-patent regime (trade-related aspects of intellectual property rights—TRIPS—as supplemented by bilateral agreements) is severely unjust—and its imposition a human-rights violation on account of the avoidable mortality and morbidity it foreseeably produces. (shrink)

Precision medicine (PM) aims to revolutionise healthcare, but little is known about the role religion and spirituality might play in the ethical discourse about PM. This Perspective reports the outcomes of a knowledge exchange fora with religious authorities in Singapore about data sharing for PM. While the exchange did not identify any foundational religious objections to PM, ethical concerns were raised about the possibility for private industry to profiteer from social resources and the potential for genetic discrimination by private health (...) insurers. According to religious authorities in Singapore, sharing PM data with private industry will require a clear public benefit and robust data governance that incorporates principles of transparency, accountability and oversight. (shrink)

As it has historically been the case with many pandemics, the Covid-19 experience will induce many philosophers to reconsider the value of medical practice. This should be a good opportunity to critically scrutinize the way medical research and medical interventions are carried out. For much of its history, medicine has been very inefficient. But, even in its contemporary forms, a review of common protocols in medical research and medical interventions reveal many shortcomings, especially related to methodological flaws, and more importantly, (...) conflicts of interests due to profit incentives. In the face of these problems, we propose a program of “gentle medicine”. This term, originally formulated by philosopher Jacob Stegenga, describes a form of medicine in which physicians intervene less than they currently do. As part of this general program, we advance a series of reform recommendations that could be enacted both by medical staff in their everyday practice, but also by public health officials and policymakers. (shrink)

Most people have a clear sense of what they mean by disability, and have little trouble identifying conditions they consider disabling. Yet providing a clear and consistent definition of disability is far from straightforward. Standardly, disability is understood as the restriction in our abilities to perform tasks, as a result of an impairment of normal physical or cognitive human functioning. However, which inabilities matter? We are all restricted by our bodies, and are all incapable of performing some tasks, but most (...) of these inabilities are not considered disabilities. If, then, we are to avoid the category of disability becoming overly broad—and thus politically and practically useless—we need some way of picking out the specific inabilities that are disabling. I argue that our answer should be informed by an account of the opportunities individuals are entitled to be able to perform as a matter of justice. Thus, to be disabled is to have these opportunities restricted, and not to deviate from the species norm or lack any ability that might improve our well-being. (shrink)

Individuals with body integrity identity disorder seek to address a non-delusional incongruity between their body image and their physical embodiment, sometimes via the surgical amputation of healthy body parts. Opponents to the provision of therapeutic healthy-limb amputation in cases of BIID make appeals to the envisioned harms that such an intervention would cause, harms such as the creation of a lifelong physical disability where none existed before. However, this concept of harm is often based on a normative biomedical model of (...) health and disability, a model which conflates amputation with impairment, and impairment with a disability. This article challenges the prima facie harms assumed to be inherent in limb amputation and argues in favour of a potential treatment option for those with BIID. To do this, it employs the social model of disability as a means to separate the concept of impairment and disability and thereby separate the acute and chronic harms of the practice of therapeutic healthy-limb amputation. It will then argue that provided sufficient measures are put in place to ensure that those with atypical bodily constructions are not disadvantaged, the chronic harms of elective amputation would cease to be. (shrink)

The unfairness of health inequalities depends on the more fundamental question of the relationship between justice in health and distributive justice more generally. In this article, I discuss some constraints on how health should be incorporated in a theory of justice and their implications for when health inequalities can be considered to be unfair. I argue against adopting separate distributive principles for health, and in favour of conceiving justice in health as interrelated with, and contingent on, justice in the distribution (...) of other important social goods and resources, in particular income. Accordingly, health inequalities are unfair when they are the result of an unfair distribution of resources. (shrink)

Health-care goods are goods with peculiar properties, and where they are scarce, societies face potentially explosive distributional conflicts. Animated public and academic debates on the necessity and possible justice of limit-setting in health care have taken place in the last decades and have recently taken a turn toward procedural rather than substantial criteria for justice. This article argues that the most influential account of procedural justice in health-care rationing, presented by Daniels and Sabin, is indeterminate where concrete properties of rationing (...) institutions are concerned. Such properties inscribe substantial norms into institutions. These norms can derive validity only from democratic majority decisions, which must be seen as an instance of pure procedural justice. We therefore have to move the discussion to a meta-level and ask how concrete properties of institutions are being chosen. I suggest four criteria for sufficiently democratic institutional design choice and conclude that as institutional properties are likely to have effects on the resulting distribution of health care, design choices should be empirically informed and taken both democratically and deliberately. (shrink)

Research question The secondary research use of treatment data has the potential to expand medical knowledge and improve patient care. Hospitals play an important role in systematic secondary research use: they generate large amounts of treatment data and are supposed to establish the necessary structures for their use in research. This raises the ethical question: do hospitals have a moral duty to support secondary research use of treatment data by establishing and operating the necessary resources and infrastructure? Procedure Our aim (...) is to outline a conceptual framework to discuss the question and to propose a first normative position. Building on insights from business and organizational ethics, we develop a conceptual framework in which we view hospitals as moral actors. Our normative-ethical analysis is based on a reconstructive stakeholder approach, in which we identify the following general duties of hospitals: orientation towards patient wellbeing; cost efficiency; enabling employees to act in accordance with professional ethical standards; supporting public health and research. We examine whether these general duties provide reasons for a specific duty of hospitals to support secondary research use of treatment data. We discuss potential objections to such a duty arising from other, potentially conflicting general duties of hospitals (e.g., data protection), from practice (e.g., costs/resources), or related discourses (data ownership). Conclusion Certain general duties (orientation towards patient wellbeing, cost efficiency, support of public health) justify a duty of hospitals to support secondary research use of treatment data. The duty to enable employees to act in accordance with professional ethical standards is only an indirect reason; the duty to support research applies solely to university hospitals. Potential objections apply to a certain extent but can be mitigated through targeted measures. (shrink)

This paper seeks to investigate and assess a particular form of relationship between the State and its citizens in the context of the COVID-19 pandemic, namely that of obedience to the law and its related right of protest through civil disobedience. We do so by conducting an analysis and normative evaluation of two cases of disobedience to the law: (1) healthcare professionals refusing to attend work as a protest against unsafe working conditions, and (2) citizens who use public demonstration and (...) deliberately ignore measures of social distancing as a way of protesting against lockdown. While different in many aspects, both are substantially similar with respect to one element: their respective protesters both rely on unlawful actions in order to bring change to a policy they consider unjust. We question the extent to which healthcare professionals may participate in civil disobedience with respect to the duty of care intrinsic to the medical profession, and the extent to which opponents of lockdown and confinement measures may reasonably engage in protests without endangering the lives and basic rights of non-dissenting citizens. Drawing on a contractualist normative framework, our analysis leads us to conclude that while both cases qualify as civil disobedience in the descriptive sense, only the case of healthcare professionals qualifies as morally justified civil disobedience. (shrink)

The increasing implementation of and reliance on machine-learning (ML) algorithms to perform tasks, deliver services and make decisions in health and healthcare have made the need for fairness in ML, and more specifically in healthcare ML algorithms (HMLA), a very important and urgent task. However, while the debate on fairness in the ethics of artificial intelligence (AI) and in HMLA has grown significantly over the last decade, the very concept of fairness as an ethical value has not yet been sufficiently (...) explored. Our paper aims to fill this gap and address the AI ethics principle of fairness from a conceptual standpoint, drawing insights from accounts of fairness elaborated in moral philosophy and using them to conceptualise fairness as an ethical value and to redefine fairness in HMLA accordingly. To achieve our goal, following a first section aimed at clarifying the background, methodology and structure of the paper, in the second section, we provide an overview of the discussion of the AI ethics principle of fairness in HMLA and show that the concept of fairness underlying this debate is framed in purely distributive terms and overlaps with non-discrimination, which is defined in turn as the absence of biases. After showing that this framing is inadequate, in the third section, we pursue an ethical inquiry into the concept of fairness and argue that fairness ought to be conceived of as an ethical value. Following a clarification of the relationship between fairness and non-discrimination, we show that the two do not overlap and that fairness requires much more than just non-discrimination. Moreover, we highlight that fairness not only has a distributive but also a socio-relational dimension. Finally, we pinpoint the constitutive components of fairness. In doing so, we base our arguments on a renewed reflection on the concept of respect, which goes beyond the idea of equal respect to include respect for individual persons. In the fourth section, we analyse the implications of our conceptual redefinition of fairness as an ethical value in the discussion of fairness in HMLA. Here, we claim that fairness requires more than non-discrimination and the absence of biases as well as more than just distribution; it needs to ensure that HMLA respects persons both as persons and as particular individuals. Finally, in the fifth section, we sketch some broader implications and show how our inquiry can contribute to making HMLA and, more generally, AI promote the social good and a fairer society. (shrink)

In this paper, I argue that disabled people have a right to assistive technology, but this right cannot be grounded simply in a broader right to health care or in a more comprehensive view like the capabilities approach to justice. Both of these options are plagued by issues that I refer to as the problem of constriction, where the theory does not justify enough of the AT that disabled people should have access to, and the problem of overextension, where the (...) theory cannot adequately identify an upper limit on the AT that people have a right to. As an alternative to these justificatory frameworks, I argue that disabled people are owed access to AT at the expense of nondisabled people as a matter of compensatory justice. That is, I defend the position that disabled people are owed AT as part of due compensation for the harms they experience from being disadvantaged by society’s dominant cooperative scheme and the violation of their right to equality of opportunity that such disadvantage entails. I also propose a method for identifying an upper limit to what this right to AT requires. In this way, I argue that compensatory justice avoids both the problem of constriction and the problem of overextension. (shrink)

Balfe argues against enhanced interrogation. He particularly focuses on the involvement of U.S. healthcare professionals in enhanced interrogation. He identifies several empirical and normative factors and argues that they are not good reasons to morally justify enhanced interrogation. I argue that his argument can be improved by making two points. First, Balfe considers the reasoning of those healthcare professionals as utilitarian. However, careful consideration of their ideas reveals that their reasoning is consequential rather than utilitarian evaluation. Second, torture is a (...) serious human rights abuse. When healthcare professionals become involved in enhanced interrogation, they violate not only human rights against torture but also human rights to health. Considering the consequential reasoning against human rights abuses, healthcare professionals’ involvement in enhanced interrogation is not morally justified. Supplementing Balfe’s position with these two points makes his argument more complete and convincing, and hence it can contribute to the way which shows that enhanced interrogation is not justified by consequential evaluation. (shrink)

Disability activists have sometimes claimed their disability has actually increased their well-being. Some even say they would reject a cure to keep these gains. Yet, these same activists often simultaneously propose improvements to the quality and accessibility of assistive technology. However, for any argument favoring assistive over curative technology to work, there must be a coherent distinction between the two. This line is already vague and will become even less clear with the emergence of novel technologies. This paper asks and (...) tries to answer the question: what is it about the paradigmatic examples of curative and assistive technologies that make them paradigmatic and how can these defining features help us clarify the hard cases? This analysis will begin with an argument that, while the common views of this distinction adequately explain the paradigmatic cases, they fail to accurately pick out the relevant features of those technologies that make them paradigmatic and to provide adequate guidance for parsing the hard cases. Instead, it will be claimed that these categories of curative or assistive technologies are defined by the role the technologies play in establishing a person’s relational narrative identity as a member of one of two social groups: disabled people or non-disabled people. (shrink)

School closure is one of the most debated measures undertaken to contain the spread of the Coronavirus disease (COVID-19) pandemic. The pandemic has devastating health and socio-economic effects and must be contained, but schools play a vital role in present and future well-being, capabilities and health of children. We examine the detrimental consequences of both the closure and reopening of schools, by focusing on inequalities in the challenges affecting children and their families. This paper is grounded on Irish and Italian (...) data from a multi-national longitudinal qualitative interview study. Research participants articulated a variety of issues and challenges that highlight inequalities in access to education during school closures, in the supportiveness of home setting, and in school preparedness to reopen, often mirroring or exacerbating pre-existing inequalities. The reported unequal lived experiences indicate that some harms are actionable, and already suggest some potential harm mitigation strategies. We conclude by advocating for enhanced public consultation to help mitigate the consequences of public dilemmas in general, and to help detect and tackle inadequacies and inequalities for school children through and beyond the pandemic, by learning from the experience of the concerned actors. (shrink)

Providing healthcare services frequently involves cognitively demanding tasks, including diagnoses and analyses as well as complex decisions about treatments and therapy. From a global perspective, ethically significant inequalities exist between regions where the expert knowledge required for these tasks is scarce or abundant. One possible strategy to diminish such inequalities and increase healthcare opportunities in expert-scarce settings is to provide healthcare solutions involving digital technologies that do not necessarily require the presence of a human expert, e.g., in the form of (...) artificial intelligent decision-support systems (AI-DSS). Such algorithmic decision-making, however, is mostly developed in resource- and expert-abundant settings to support healthcare experts in their work. As a practical consequence, the normative standards and requirements for such algorithmic decision-making in healthcare require the technology to be at least as explainable as the decisions made by the experts themselves. The goal of providing healthcare in settings where resources and expertise are scarce might come with a normative pull to lower the normative standards of using digital technologies in order to provide at least some healthcare in the first place. We scrutinize this tendency to lower standards in particular settings from a normative perspective, distinguish between different types of absolute and relative, local and global standards of explainability, and conclude by defending an ambitious and practicable standard of local relative explainability. (shrink)

Emerging parallel to long-standing, academic and policy inquiries on personal responsibility for health is the empirical assessment of lay persons’ views. Yet, previous studies rarely explored personal responsibility for health among lay persons as dynamic societal values. We sought to explore lay persons’ views on personal responsibility for health using the Fairness Dialogues, a method for lay persons to deliberate equity issues in health and health care through a small group dialogue using a hypothetical scenario. We conducted two 2-h Fairness (...) Dialogues sessions (n = 15 in total) in Nova Scotia, Canada. We analyzed data using thematic analysis. Our analysis showed that personal choice played an important role in participants’ thinking about health. Underlying the concept of personal choice was considerations of freedom and societal debt. In participants’ minds, personal and social responsibilities co-existed and they were unwilling to determine health care priority based on personal responsibility. The Fairness Dialogues is a promising deliberative method to explore lay persons’ views as dynamic values to be developed through group dialogues as opposed to static, already-formed values waiting to be elicited. (shrink)

The most common solutions to the problem of high pharmaceutical prices have taken the form of regulations, price negotiations, or changes in drug coverage by insurers. These measures for the most part transfer the burden of drug expenditures between pharmaceutical companies and payers or between payers. The aim of this study is to propose an alternative model for the relationship between the main stakeholders involved in the price setting and purchasing of pharmaceuticals, one that encourages a more cooperative approach. We (...) draw from principles of ethics and health economics and apply them to the context of the pharmaceutical industry. The model prioritises two objectives, to make drugs financially accessible to the patients who need them, and to keep pharmaceutical companies viable and profitable. It is centered around the sharing of financial risk between the main stakeholders, which we describe as ‘enlightened risk sharing’. After establishing the foundations of this model, we expand on the type of policies that can follow these principles with current day examples. (shrink)

This paper aims to square our considered judgements about the moral significance of healthcare with various empirical and conceptual challenges about its role in a theory of justice. I do so by defending the moral significance of healthcare by reference to a central but neglected dimension – healthcare’s expressive function. Over and above its influence on health outcomes and other metrics of justice (such as opportunity or welfare), and despite its relatively limited impact on population health outcomes, healthcare expresses respect (...) for individuals in a distinctive and morally salient way. Grounding the moral significance of healthcare in this way not only highlights an important distinguishing feature of healthcare, but it also makes our support for healthcare immune from several powerful objections against its significance. This conclusion has important implications for theorists of (health) justice and for political philosophers more widely, highlighting the appropriate role of healthcare within public policy and normative theorising about theories of justice. (shrink)

Gratitude is both expected and problematic in live organ donation. Are there grounds to require it, and to forbid access to live donor transplantation to a recipient who fails to signal that he feels any form of gratitude? Recipient gratitude is not currently required for organ donation, but it is expected and may be a moral requirement. Despite this, we argue that making it a condition for live organ transplantation would be unjustified. It would constitute a problematic and disproportionate punishment (...) for perceived immoral behaviour on the part of the recipient. It would also bar the donor from positive aspects of organ donation that remain even in the absence of recipient gratitude. A potential recipient's lack of gratitude should be explored as a possible symptom of other morally problematic issues and integrated into the information provided to the potential donor. Recognition of the donor's gift and gratitude for it may also need to be expressed in part by others. This last aspect is relevant even in cases where the recipient feels and expresses gratitude. (shrink)

Debate has raged in Canada recently over whether in vitro fertilization should be funded through public health insurance. Such a move would require that the provinces classify IVF as a medically necessary service. In this paper, I defend the position I have taken publicly—especially in Ontario, my own province—that IVF is not medically necessary. I contend that, by funding IVF on grounds of medical necessity, governments like Ontario's violate their commitments to equality and fairness, and cause harm. They do the (...) last by suggesting that the lives of people who forgo procreation, and perhaps have children in other ways, will be stunted. (shrink)

This article presents an argument related to justice obligations during a pandemic and explores implications of the argument. A just society responds to a serious threat to the well-being of its people such as a viral pandemic to mitigate the impact of the pandemic on the well-being of its members. This creates identifiable societal obligations which are discharged by the institutions and individuals within society that are situated to do so. There are therefore identifiable obligations resting on various societal institutions, (...) such as government, churches, schools, and corporate institutions, as well as obligations resting on individuals. Should an institution or individual fail to act in ways consistent with these social obligations, they perpetrate an injustice on society and its members. (shrink)

Patients and physicians often perceive the current health care system to be unfair, in part because of the ways in which coverage decisions appear to be made. To address this problem the Ethical Force Program, a collaborative effort to create quality improvement tools for ethics in health care, has developed five content areas specifying ethical criteria for fair health care benefits design and administration. Each content area includes concrete recommendations and measurable expectations for performance improvement, which can be used by (...) those organizations involved in the design and administration of health benefits packages, such as purchasers, health plans, benefits consultants, and practitioner groups. (shrink)

The ethics of health incentive research—a form of public health research—are not well developed, and concerns of justice have been least examined. In this paper, we explore what potential long term harms in relation to justice may occur as a result of such research and whether they should be considered as part of its ethical evaluation. ‘Long term harms’ are defined as harms that contribute to existing systematic patterns of disadvantage for groups. Their effects are experienced on a long term (...) basis, persisting even once an incentive research project ends. We will first establish that three categories of such harms potentially arise as a result of health incentive interventions. We then argue that the risk of these harms also constitutes a morally relevant consideration for health incentive research and suggest who may be responsible for assessing and mitigating these risks. We propose that responsibility should be assigned on the basis of who initiates health incentive research projects. Finally, we briefly describe possible strategies to prevent or mitigate the risk of long term harms to members of disadvantaged groups, which can be employed during the design, conduct and dissemination of research projects. (shrink)

In most other nations, insurance for medical care is called sickness insurance, and it covers sick people. In the United States, we have “health insurance,” and its major carriers — commercial insurers, large employers, and increasingly government programs — strive to avoid sick people and cover only the healthy. This perverse logic at the heart of the American health insurance system is the key to reform debates.Focusing on sick people versus healthy people might seem a strange way to view the (...) coverage issue. Most discussions of insurance categorize people into other groupings: the insured versus the uninsured; Caucasian whites versus other racial and ethnic groups; men versus women; poor and low-income people versus everybody else; children, adults, and the elderly; or citizens versus immigrants and undocumented aliens. More recently, health researchers have begun talking about “vulnerable populations,” using most of the same demographic groupings and adding other illness-inducing factors such as social isolation, stress, and impoverished neighborhoods. But as I will show, insurance plans now use premiums, cost-sharing, and other design features in ways that indirectly divide each of these groups into the sick and the healthy, to the detriment of the sick. By shifting the costs of illness onto people who use medical care — that is, sick people — market-oriented reforms of the last few decades have eroded insurance in the name of strengthening it. (shrink)

To say health is 'special' is to say that it has a moral significance that differentiates it from other goods (cars, say or radios) and, as a matter of justice, warrants distributing it separately. In this essay, I critique a new justification for the specialness thesis about healthcare (STHC) recently put forth by Engster. I argue that, regrettably, Engster's justification of STHC ultimately fails and fails on much the same grounds as have previous justifications of STHC. However, I also argue (...) that Engster's argument still adds something valuable to the debate around STHC insofar as it reminds us that the moral significance of healthcare may be wider than simply its effect on the incidence of disability and disease: one further reason we may think healthcare is morally significant is because it concerns the treatment and care of those who are already unwell. (shrink)

Medical populism, as a political style of handling the challenges of a public health crisis, has primarily been analyzed in terms of its influence on the efficacy of governmental efforts to meet the challenges of the current pandemic (such as those related to testing, vaccination, and community restrictions). As these efforts have moral consequences (they, for instance, will affect people’s wellbeing and may lead to suffering, loss of opportunities, and unfair distributions), an analysis of the ethics of medical populism is (...) much needed. In this essay, we address the need to analyze the moral dimension of medical populism by relating it to issues in healthcare ethics. Specifically, we identify the moral significance of medical populism by demonstrating how it contributes to the failure of governments to discharge their moral duty to provide for the healthcare needs of their people, and, correlatively, to the violation of the people’s moral right to healthcare. We argue that with medical populism, governments tend to mishandle the constraints that would morally justify their shortcomings in fulfilling such duty. We identify such constraints as mainly referring to the governments’ given (economic and institutional) capacities and the relative degree of incumbency of their competing duties. (shrink)

Can transfusions of blood plasma slow down ageing or even rejuvenate people? Recent preclinical studies and experimental tests inspired by the technique known as parabiosis have aroused great media attention, although for now there is no clear evidence of their effectiveness. This line of research and the interest it is triggering testify to the prominent role played by the idea of combating the “natural” ageing process in the scientific and social agenda. While seeking to increase the duration of healthy living (...) time may be considered a duty, it also raises ethical questions about how to pursue this goal. Specifically, therapies and techniques accessible only to a fraction of the population seem destined to exponentially increase social inequality and to produce undesirable consequences. In this article we address the issue precisely in the light of the prospected use of plasma for the rejuvenation of a small elite of people. (shrink)

As individuals grow older, they usually require assistance with the daily tasks of self-care. This type of assistance, ancillary care, is essential to maintaining the health of those who need these services. In his prudential lifespan account, Norman Daniels includes access to such services making his account an attractive proposal given the current demographic shift. In this paper, I examine the prudential lifespan account through the lens of old age and I focus on the two concepts on which the lifespan (...) account relies. I show that these two concepts, normal species functioning and opportunity cannot buttress Daniels’s lifespan account; at least it cannot do so for older persons. The tensions that I identify in the prudential lifespan account in relation to aging are instructive for the more recent proposals to include aging in a theory of health and health justice. In addition, my analysis allows me to demonstrate that Daniels’s view of opportunity is irreconcilable to capabilities, the latter being more adaptable to the realities of aging. If capabilities appear more promising, it is nonetheless imperative that the specificities of extended care, such as the need for unpaid caregiving, be taken into consideration. (shrink)