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)

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)

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)

In thinking about how to expand insurance coverage, the issue that matters is whether insurance enables sick and high-risk people to get medical care. Over the course of three decades, market-oriented insurance reforms have shifted more costs of illness onto people who need and use medical care. By making the users of care pay for it , cost-sharing discourages sick people from getting care, even if they have insurance, and for people with low-incomes and tight budgets, cost-sharing can effectively deny (...) them access to care. Thus, covering or not covering sick people is the core issue of health insurance reform, both as a determinant of support and opposition to proposals, and as the proper yardstick for evaluating reform ideas. (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)

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)

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)

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)

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.

: 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.

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)

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)

Neuroimaging research regularly yields “incidental findings”: observations of potential clinical significance in healthy volunteers or patients, but which are unrelated to the purpose or variables of the study.

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)

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)

The range of opportunities people enjoy in life largely depends on social, biological, and genetic factors for which individuals are not responsible. Philosophical debates about equality of opportunities have focussed mainly on addressing social determinants of inequalities. However, the introduction of human bioenhancement should make us reconsider what our commitment to equality entails. We propose a way of improving morally relevant equality that is centred on what we consider a fair distribution of bioenhancements. In the first part, we identify three (...) main positions in the debate on bioenhancement and equality, and we show how each of them fails to meet the demands of a serious commitment to equality. In the second part, we formulate a new proposal that we think better promotes equality of opportunities: people from disadvantaged socio-economic backgrounds should be given access to bioenhancements while people from privileged socio-economic background should be prohibited from using them. We argue that those who are concerned about the inequality implications of bioenhancement should embrace this solution, rather than reject bioenhancement. (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)

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)

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)

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)

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)

Research on how to understand legally recognized socio-economic rights produced many insights into the nature of rights. Legally recognized rights to health and, by extension, health care could contribute to health justice. Yet a tension remains between widespread international and transnational constitutional recognition of rights to health and health care and compelling normative conditions for rights recognition from both philosophers seeking to identify the scope and structure of the rights and policy scholars seeking to understand how to practically realize such (...) rights. This work identifies an overlooked source of these difficulties: the right to health care and other health rights are necessarily ‘complex’, consisting of multiple related, but irreducible, morally valuable components. ‘Complex rights’ do not fit the traditional structure of human rights, so legal recognition of same can appear confused from a philosophical perspective, but there is ample reason to admit complex rights into our moral ontology and doing so can help bridge the divide between global health practices and ongoing work in the philosophy of rights and public policy. Recognition of complex rights admittedly shifts the burden for justifying health rights, but it does so in a way that is instructive for general philosophical analysis of socio-economic rights. (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)