Despite the advent of CRISPR, safe and effective gene editing for human enhancement remains well beyond our current technological capabilities. For the discussion about enhancing human beings to be worth having, then, we must assume that gene-editing technology will improve rapidly. However, rapid progress in the development and application of any technology comes at a price: obsolescence. If the genetic enhancements we can provide children get better and better each year, then the enhancements granted to children born in any given (...) year will rapidly go out of date. Sooner or later, every modified child will find him- or herself to be “yesterday’s child.” The impacts of such obsolescence on our individual, social, and philosophical self-understanding constitute an underexplored set of considerations relevant to the ethics of genome editing. (shrink)

Christopher Boorse's Bio Statistical Theory (BST) defines health as the absence of disease, and disease as the adverse departure from normal species functioning. This paper presents a two-pronged problem for this account. First I demonstrate that, in order to accurately account for dynamic physiological functions, Boorse's account of normal function needs to be modified to index functions against situations. I then demonstrate that if functions are indexed against situations, the BST can no longer account for diseases that result from specific (...) environmental factors. The BST is impaled on either horn of this dilemma and therefore must be dismissed. (shrink)

The literature on health and diseases is usually presented as an opposition between naturalism and normativism. This article argues that such a picture is too simplistic: there is not one opposition between naturalism and normativism, but many. I distinguish four different domains where naturalist and normativist claims can be contrasted: (1) ordinary usage, (2) conceptually clean versions of “health” and “disease,” (3) the operationalization of dysfunction, and (4) the justification for that operationalization. In the process I present new arguments in (...) response to Schwartz (2007) and Hausman (2012) and expose a link between the arguments made by Schwartz (2007) and Kingma (2010). Distinguishing naturalist claims at these four domains will allow us to make progress by (1) providing more nuanced, intermediate positions about a possible role for values in health and disease; and (2) assisting in the addressing of relativistic worries about the value-ladenness of health and disease. (shrink)

The enhancement debate in neuroscience and biomedical ethics tends to focus on the augmentation of certain capacities or functions: memory, learning, attention, and the like. Typically, the point of contention is whether these augmentative enhancements should be considered permissible for individuals with no particular “medical” disadvantage along any of the dimensions of interest. Less frequently addressed in the literature, however, is the fact that sometimes the _diminishment_ of a capacity or function, under the right set of circumstances, could plausibly contribute (...) to an individual's overall well-being: more is not always better, and sometimes less is more. Such cases may be especially likely, we suggest, when trade-offs in our modern environment have shifted since the environment of evolutionary adaptation. In this article, we introduce the notion of “diminishment as enhancement” and go on to defend a _welfarist_ conception of enhancement. We show how this conception resolves a number of definitional ambiguities in the enhancement literature, and we suggest that it can provide a useful framework for thinking about the use of emerging neurotechnologies to promote human flourishing. (shrink)

In recent years, neuroscience has been a particularly prolific discipline stimulating many innovative treatment approaches in medicine. However, when it comes to the brain, new techniques of intervention do not always meet with a positive public response, in spite of promising therapeutic benefits. The reason for this caution clearly is the brain’s special importance as “organ of the mind”. As such it is widely held to be the origin of mankind’s unique position among living beings. Likewise, on the level of (...) the individual human being, the brain is considered the material substrate of those traits that in combination render each person unique. In view of this preeminent significance of the brain, it is understandable that, in general, interventions into the brain are considered a delicate issue and that new techniques of intervention are scrutinised with particular care. However, in doing so it is important not to go to the opposite extreme and shy away from promising new therapeutic approaches for debilitating disorders of the brain. With respect to the new techniques of brain intervention a broad interdisciplinary perspective is required to discern irrational fear from justified concern. Hence, the Europäische Akademie established a project group consisting, on the one hand, of experts from different fields of medicine who have got first-hand experience of applying the techniques at issue and, on the other hand, of philosophers and a legal expert. The task of this team was to review the state of the art with respect to each single technique of intervening in the brain, to indicate future developments, and to address the ethical and legal issues common to all of them. The project’s outcome is the book at hand. (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)

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)

The foundations of research ethics are riven with fault lines emanating from a fear that if research is too closely connected to weighty social purposes an imperative to advance the common good through research will justify abrogating the rights and welfare of study participants. The result is an impoverished conception of the nature of research, an incomplete focus on actors who bear important moral responsibilities, and a system of ethics and oversight highly attuned to the dangers of research but largely (...) silent about threats of ineffective, inefficient, and inequitable medical practices and health systems. -/- In For the Common Good: Philosophical Foundations of Research Ethics, Alex John London defends a conception of the common good that grounds a moral imperative with two requirements. The first is to promote research that generates the information necessary to enable key social institutions to effectively, efficiently, and equitably safeguard the basic interests of individuals. The second is to ensure that research is organized as a voluntary scheme of social cooperation that respects its various contributors' moral claims to be treated as free and equal. Connecting research to the goals of a just social order grounds a framework for assessing and managing research risk that reconciles these requirements and justifies key oversight practices in non-paternalistic terms. Reconceiving research ethics as resolving coordination problems and providing credible assurance that these requirements are being met expands the issues and actors that fall within the purview of the field and provides the foundation for a more unified and coherent approach to domestic and international research. -/- This is an open access title available under the terms of a CC BY-NC-ND 4.0 license. It is free to read at Oxford Scholarship Online and offered as a free PDF download from OUP and selected open access locations. (shrink)

In this article, I argue that depression and suicide are natural kinds insofar as they are classes of abnormal behavior underwritten by sets of stable biological mechanisms. In particular, depression and suicide are neurobiological kinds characterized by disturbances in serotonin functioning that affect various brain areas (i.e., the amygdala, anterior cingulate, prefrontal cortex, and hippocampus). The significance of this argument is that the natural (biological) basis of depression and suicide allows for reliable projectable inferences (i.e., predictions) to be made about (...) individual members of a kind. In the context of assisted suicide, inferences about the decision-making capacity of depressed individuals seeking physician-assisted suicide are of special interest. I examine evidence that depression can hamper the decision-making capacity of individuals seeking assisted suicide and discuss some implications. (shrink)

International research, sponsored by for-profit companies, is regularly criticised as unethical on the grounds that it exploits research subjects in developing countries. Many commentators agree that exploitation occurs when the benefits of cooperative activity are unfairly distributed between the parties. To determine whether international research is exploitative we therefore need an account of fair distribution. Procedural accounts of fair bargaining have been popular solutions to this problem, but I argue that they are insufficient to protect against exploitation. I argue instead (...) that a maximin principle of fair distribution provides a more compelling normative account of fairness in relationships characterised by extreme vulnerability and inequality of bargaining potential between the parties. A global tax on international research would provide a mechanism for implementing the maximin account of fair benefits. This model has the capacity to ensure fair benefits and thereby prevent exploitation in international research. (shrink)

I argue for a conception of health as a person's ability to achieve or exercise a cluster of basic human activities. These basic activities are in turn specified through free-standing ethical reasoning about what constitutes a minimal conception of a human life with equal human dignity in the modern world. I arrive at this conception of health by closely following and modifying Lennart Nordenfelt's theory of health which presents health as the ability to achieve vital goals. Despite its strengths I (...) transform Nordenfelt's argument in order to overcome three significant drawbacks. Nordenfelt makes vital goals relative to each community or context and significantly reflective of personal preferences. By doing so, Nordenfelt's conception of health faces problems with both socially relative concepts of health and subjectively defined wellbeing. Moreover, Nordenfelt does not ever explicitly specify a set of vital goals. The theory of health advanced here replaces Nordenfelt's (seemingly) empty set of preferences and society-relative vital goals with a human species-wide conception of basic vital goals, or ‘central human capabilities and functionings’. These central human capabilities come out of the capabilities approach (CA) now familiar in political philosophy and economics, and particularly reflect the work of Martha Nussbaum. As a result, the health of an individual should be understood as the ability to achieve a basic cluster of beings and doings—or having the overarching capability, a meta-capability, to achieve a set of central or vital inter-related capabilities and functionings. (shrink)

In a series of recent papers, I have made three arguments about how to define “disease” and evaluate and apply possible definitions. First, I have argued that definitions should not be seen as traditional conceptual analyses, but instead as proposals about how to define and use the term “disease” in the future. Second, I have pointed out and attempted to address a challenge for dysfunction-requiring accounts of disease that I call the “line-drawing” problem: distinguishing between low-normal functioning and dysfunctioning. Finally, (...) I have used a dysfunction-requiring approach to argue that some extremely prevalent conditions, such as high blood pressure, high cholesterol, and ductal carcinoma in situ, are not diseases, but instead are risk factors. Four of the papers in this issue directly engage my previous work. In this commentary, I applaud the advances these authors make, address points of disagreement, and make suggestions about where the discussion should go next. (shrink)

In discussions of the ethics of human gene therapy, it has become standard to draw a distinction between the use of human gene transfer techniques to treat health problems and their use to enhance or improve normal human traits. Some dispute the normative force of this distinction by arguing that it is undercut by the legitimate medical use of human gene transfer techniques to prevent disease - such as genetic engineering to bolster immune function, improve the efficiency of DNA repair, (...) or add cellular receptors to capture and process cholesterol. If disease prevention is a proper goal of medicine, these critics argue, and the use of gene transfer techniques to enhance human health maintenance capacities will help achieve that goal, then the “treatment/enhancement‘ distinction cannot define the limits of legitimate gene therapy. In this paper, I argue that a line can be drawn between prevention and enhancement for gene therapy (and thus between properly medical and nonmedical uses of gene therapy), but only if one is willing to accept two rather old-fashioned claims: 1) Some health problems are best understood as if they were entities in their own right, reifiable as processes or parts in a biological system, with at least as much ontological objectivity and theoretical significance as the functions that they inhibit. 2) Legitimate preventive genetic health care should be limited to efforts to defend people from attack by these more robust pathological entities, rather than changing their bodies to evade social injustices. (shrink)

One challenge in providing an adequate definition of physical disability is unifying the heterogeneous bodily conditions that count as disabilities. We examine recent proposals by Elizabeth Barnes (2016), and Dana Howard and Sean Aas (2018), and show how this debate has reached an impasse. Barnes’ account struggles to deliver principled unification of the category of disability, whilst Howard and Aas’ account risks inappropriately sidelining the body. We argue that this impasse can be broken using a novel concept: marginalised functioning. Marginalised (...) functioning concerns the relationship between a person’s bodily capacities and their social world: specifically, their ability to function in line with the default norms about how people can typically physically function that influence the structuring of social space. We argue that attending to marginalised functioning allows us to develop, not one, but three different models of disability, all of which—whilst having different strengths and weaknesses—unify the category of disability without sidelining the body. (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)

Various U.S. laws, such as the Clean Air Act and the Food Quality Protection Act, require additional protections for susceptible subpopulations who face greater environmental health risks. The main ethical rationale for providing these protections is to ensure that environmental health risks are distributed fairly. In this article, we (1) consider how several influential theories of justice deal with issues related to the distribution of environmental health risks; (2) show that these theories often fail to provide specific guidance concerning policy (...) choices; and (3) argue that an approach to public decision making known as accountability for reasonableness can complement theories of justice in establishing acceptable environmental health risks for the general population and susceptible subpopulations. Since accountability for reasonableness focuses on the fairness of the decision-making process, not the outcome, it does not guarantee that susceptible subpopulations will receive a maximum level of protection, regardless of costs or other morally relevant considerations. (shrink)

People’s health is hugely affected by where they live, their occupational status and their socio-economic position. It has been widely argued that the presence of such social determinants in health provides good reasons to reject luck egalitarianism as a theory of distributive justice in health. The literature provides different reasons why this responsibility-sensitive theory of distributive justice should not be applied to health. The critiques submit that the social circumstances undermine or remove people’s responsibility for their health; responsibility sensitive health (...) policies would adversely affect those who are worst off and; the luck egalitarian approach to health distracts from the important task of rectifying socio-economic influences on people's health and provides individualistic solutions to collective problems. But for each of these variants of the critique luck egalitarianism provides suitable answers. The literature on social determinants is no detriment to the project of applying luck egalitarianism to health. (shrink)

A normatively adequate public health ethics needs to be anchored in political philosophy rather than in ethics. Its central ethical concerns are likely to include trust and justice, rather than autonomy and informed consent.

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)

This article argues that diverse theorists have reasons to theorize about fairness in nonideal conditions, including theorists who reject fairness in ideal theory. It then develops a new all-purpose model of ‘nonideal fairness.’ §1 argues that fairness is central to nonideal theory across diverse ideological and methodological frameworks. §2 then argues that ‘nonideal fairness’ is best modeled by a nonideal original position adaptable to different nonideal conditions and background normative frameworks (including anti-Rawlsian ones). §3 then argues that the parties to (...) the model have grounds to seek a variety of remedial social, legal, cultural, and economic ‘nonideal primary goods’ for combating injustice, as well as grounds to distribute these goods in an equitable and inclusive manner. Finally, I illustrate how the model indexes the nonideal primary goods it justifies to different nonideal contexts and background normative frameworks, illustrating why diverse theorists should find the model and its output principles attractive. (shrink)

The problem of standard of care in clinical research concerns the level of treatment that investigators must provide to subjects in clinical trials. Commentators often formulate answers to this problem by appealing to two distinct types of obligations: professional obligations and natural duties. In this article, I investigate whether investigators also possess institutional obligations that are directly relevant to the problem of standard of care, that is, those obligations a person has because she occupies a particular institutional role. I examine (...) two types of institutional contexts: (1) public research agencies – agencies or departments of states that fund or conduct clinical research in the public interest; and (2) private-for-profit corporations. I argue that investigators who are employed or have their research sponsored by the former have a distinctive institutional obligation to conduct their research in a way that is consistent with the state's duty of distributive justice to provide its citizens with access to basic health care, and its duty to aid citizens of lower income countries. By contrast, I argue that investigators who are employed or have their research sponsored by private-for-profit corporations do not possess this obligation nor any other institutional obligation that is directly relevant to the ethics of RCTs. My account of the institutional obligations of investigators aims to contribute to the development of a reasonable, distributive justice-based account of standard of care. (shrink)

It is widely recognized that prioritizing health care resources by their relative cost-effectiveness can result in lower priority for the treatment of disabled persons than otherwise similar non-disabled persons. I distinguish six different ways in which this discrimination against the disabled can occur. I then spell out and evaluate the following moral objections to this discrimination, most of which capture an aspect of its unethical character: it implies that disabled persons' lives are of lesser value than those of non-disabled persons; (...) it constitutes “double jeopardy” or violates Frances Kamm's non-linkage principle; it conflicts with equality of opportunity; it conflicts with fairness, which requires ignoring (some/most) differential impacts of treatment; it wrongly gives lower priority to disabled persons for equally effective treatment; it conflicts with giving all persons an equal chance to reach their full potential; and, it is in conflict with giving priority to the worse off. (shrink)

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Societal aging raises challenging ethical questions regarding the just distribution of health care between young and old. This article considers a proposal for age-based rationing of health care, which is based on the prudential life span account of justice between age groups. While important objections have been raised against the prudential life span account, it continues to dominate scholarly debates. This article introduces a new objection, one that develops out of the well-established disability critique of social contract theories. I show (...) the implications of this critique for the prudential life span account and for the special case of age-group justice. The result is that age-based rationing based on the prudential life span approach is not supported, and that the prudential life span approach itself is not the best way to think about allocating health care between age groups. I propose an alternative approach that avoids the disability objection, and consider its implications for specific proposals for age-based rationing of health care. (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)

One generally considered plausible way to allocate resources in health care is according to people’s needs. In this paper I focus on a somewhat overlooked issue, that is the conceptual structure of health care needs. It is argued that what conceptual understanding of needs one has is decisive in the assessment of what qualifies as a health care need and what does not. The aim for this paper is a clarification of the concept of health care need with a starting (...) point in the general philosophical discussion about needs. I outline three approaches to the concept of need and argue that they all share the same conceptual underpinnings. The concept of need is then analyzed in terms of a subject x needing some object y in order to achieve some goal z. I then discuss the relevant features of the object y and the goal z which make a given need qualify as a health care need and not just a need for anything. (shrink)

Although the responsibility for health debate has intensified in several ways between Norman Daniels’ 1985 Just healthcare and Just health: meeting health needs fairly of 2008, comparatively little space is dedicated to the issue in Just health, and Daniels notes repeatedly that his account “says nothing about personal responsibility for health”. Daniels considers health responsibility mainly in a particular luck-egalitarian version which he rejects because of its potentially unfeasible, penalising and inhumane character. But I show that he nonetheless acknowledges and (...) endorses explicitly other dimensions of health responsibility. I develop a wider, more nuanced and less punitive concept of health responsibility, which expands Daniels’ brief consideration and is compatible with the overall approach set out in Just health. In its application to preventative medicine and health promotion in particular, the concept is suited to support and complement the notion that “health is special”, which is central in Just health. The concept of health responsibility as co-responsibility specifies the subjects and objects of health responsibilities. It permits the attribution of responsibility without blame and disconnects the question of assigning responsibility from decisions about entitlement to treatment or different status in prioritisation decisions. This approach secures conceptual plausibility and clarity of the concept of health responsibility, is of use in policy making, and can help reduce political tensions. (shrink)

This paper uses the fictional case of the ‘Babel fish’ to explore and illustrate the issues involved in the controversy about the use of cochlear implants in prelinguistically deaf children. Analysis of this controversy suggests that the development of genetic tests for deafness poses a serious threat to the continued flourishing of Deaf culture. I argue that the relationships between Deaf and hearing cultures that are revealed and constructed in debates about genetic testing are themselves deserving of ethical evaluation. Making (...) good policy about genetic testing for deafness will require addressing questions in political philosophy and anthropology about the value of culture and also thinking hard about what sorts of experiences and achievements make a human life worthwhile. (shrink)

Technological approaches are increasingly discussed as a solution for the provision of support in activities of daily living as well as in medical and nursing care for older people. The development and implementation of such assistive technologies for eldercare raise manifold ethical, legal, and social questions. The discussion of these questions is influenced by theoretical perspectives and approaches from medical and nursing ethics, especially the principlist framework of autonomy, non-maleficence, beneficence, and justice. Tying in with previous criticism, the present contribution (...) is taking these principles as a starting point and as a frame of reference to be critically re-examined. It thus aims to outline how existing ethical frameworks need to be extended or reconsidered to capture the ethical issues posed by technological developments regarding care for older people. In a first step, we provide a brief overview of assistive technologies in eldercare according to their purposes and functions. In the next step, we discuss how the questions and problems raised by new technologies in eldercare call for an expansion, re-interpretation, and revision of the principlist framework. We underline that the inclusion of ethical perspectives from engineering and computer science as well as a closer consideration of socio-political dimensions and fundamental anthropological and praxeological questions are needed. (shrink)

“Neurodiversity” is associated with the struggle for the civil rights of all those diagnosed with neurological or neurodevelopmental disorders. Two basic approaches in the struggle for what might be described as “neuro-equality” are taken up in the literature: There is a challenge to current nosology that pathologizes all of the phenotypes associated with neurological or neurodevelopmental disorders ); there is a challenge to those extant social institutions that either expressly or inadvertently model a social hierarchy where the interests or needs (...) of individuals are ranked relative to what is regarded as properly functioning cognitive capacities. In this paper, we explore some of the reasons justifying which make it an important tool for achieving greater neuro-equality, while still recognizing its limitations for achieving this goal. Particularly, we explore how an appeal to functionality and neurological diversity can support a re-seeing of at least certain forms of ASD. (shrink)

For Van Rensselaer Potter (1911–2001), Global Bio-Ethics is about building on the legacy of Aldo Leopold (1887–1948), one of the most notable forest managers of the twentieth century who brought to light the importance of pragmatism in the sciences and showed us a new way to proceed with environmental ethics. Following Richard Huxtable and Jonathan Ives's methodological 'Framework for Empirical Bioethics Research Projects' called 'Mapping, framing, shaping,' published in BMC Medicine Ethics (2019)), we propose operationalizing a framework for Global Bio-Ethics (...) by hybridizing approaches in empirical bioethics and ecosystem management. We explain this framework using the metaphor of forest management. This mixed approach is articulated through three phases: (1) mapping the “landscape” to build a working theory, (2) framing the “scene” to prepare the fieldwork, and (3) shaping bioethics “tools” to stimulate cooperation. Applying this methodology, an adaptive management cycle is outlined to help ensure that political processes are sustainable and socially acceptable, still based on strategic and ethical thinking, but also capable of reshaping failing policies. (shrink)

Centre for Applied Philosophy and Public Ethics, The Australian National University, LPO Box 8260, ANU, Canberra ACT 2601, Australia. Email: michael.selgelid{at}anu.edu.au ' + u + '@ ' + d + ' '/ /- ->. Home page: http: //www.cappe.edu.au/staff/michael-selgelid.htmThis article advocates the development of a moderate pluralist theory of political philosophy that recognizes that utility, liberty and equality are legitimate, independent social values and that none should have absolute priority over the others. Inter alia, such a theory would provide a principled (...) means for striking a balance, or making trade-offs, between these values in cases of conflict. Recent developments in public health ethics have made progress in thinking about how to make trade-offs between liberty and utility in particular. While public health ethicists often claim that the least restrictive alternative should be used to achieve the public health goal in question, I argue that a plausible but under-recognized idea is that the least restrictive alternative might sometimes involve improvement of global health via redistributive taxation—i.e., rather than coercive social distancing measures. I conclude by demonstrating that the proportionality principle leaves open the question of when exactly utility outweighs liberty or vice versa—and I argue that, rather than speaking about the morality of liberty-infringing public health interventions in categorical/binary terms, it would be more fruitful and realistic to think and speak about the degree to which a liberty-infringing public health intervention is morally appropriate. CiteULike Connotea Del.icio.us What's this? (shrink)

A dispute exists about whether bioethics should become a new discipline with its own methods, competency standards, duties, honored texts, and core curriculum. Unique expertise is a necessary condition for disciplines. Using the current literature, different views about the sort of expertise that might be unique to bioethicists are critically examined to determine if there is an expertise that might meet this requirement. Candidates include analyses of expertise based in "philosophical ethics," "casuistry," "atheoretical or situation ethics," "conventionalist relativism," "institutional guidance," (...) "regulatory guidance and compliance," "political advocacy," "functionalism," and "principlism." None succeed in identifying a unique area of expertise for successful bioethicists that could serve as a basis for making it a new discipline. Rather expertise in bioethics is rooted in many professions, disciplines and fields and best understood as a second-order discipline. (shrink)

Recent articles published in this journal have highlighted the shortcomings of individualistic approaches to health promotion, and the potential contributions of relational analyses of autonomy to public health ethics. I argue that the latter helps to elucidate the former, by showing that an inadequate analysis of autonomy leads to misassignment of both forward-looking and backward-looking responsibility for health outcomes. Health promotion programmes predicated on such inadequate analyses are then ineffective, because they assign responsibility to agents whose social environment inhibits their (...) ability to act on such responsibilities; inequitable, because the social barriers to autonomous agency display a socio-economic gradient; and stigmatizing, because they license blaming of individuals for their own poor health without taking into account how reasonable it is to hold these individuals responsible, given the social barriers to autonomy they face. I further sketch how incorporating a relational understanding of autonomy could help to produce health promotion programmes that do not succumb to these difficulties, while avoiding coercive paternalism, exploring potential applications in ecological approaches to health promotion. (shrink)

This paper responds to discussion and criticism contained in a mini-symposium on Just health: meeting health needs fairly. The replies clarify existing positions and modify or develop others, specifically in response to the following: Thomas Schramme criticises the claim that health is of special importance because of its impact on opportunity, and James Wilson argues that healthcare is not of special importance if social determinants of health have a major causal impact on population health. Annette Rid is concerned that the (...) relevance condition in accountability for reasonableness is unclear and does little work. Harald Schmidt aims to flesh out where an account of responsibility for health should go since one is under-developed in Just health. Michael Schefczyk and Susanne Brauer challenge aspects of the prudential lifespan account. Samia Hurst asks what impact a population view should have on clinician obligations. (shrink)

In this paper we explore the relation between health-care needs and patients’ desires within shared decision-making in a context of priority setting in health care. We begin by outlining some general characteristics of the concept of health-care need as well as the notions of SDM and desire. Secondly we will discuss how to distinguish between needs and desires for health care. Thirdly we present three cases which all aim to bring out and discuss a number of queries which seem to (...) arise due to the double focus on a patient’s need and what that patient desires. These queries regard the following themes: the objectivity and moral force of needs, the prediction about what kind of patients which will appear on a micro level, implications for ranking in priority setting, difficulties regarding assessing and comparing benefits, and implications for evidence-based medicine. (shrink)

Russell articulates compelling reasons that bioethicists and health care professionals should take individual responsibility for deconstructing structural injustices in healthcare through in...

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)

Most work addressing clinical workers' professional responsibilities concerns the norms of conduct within established professional–patient relationships, but such responsibilities may extend beyond the clinical context. We explore health workers' professional responsibilities in such “informal” encounters through the example of a doctor witnessing the misdiagnosis and mistreatment of a serious long-term condition in a television documentary, arguing that neither internalist approaches to professional responsibility nor externalist ones provide sufficiently clear guidance in such situations. We propose that a mix of both approaches, (...) emphasizing the noncomplacency and practical wisdom of virtue ethics, but grounding the normative authority of virtue in an external source, is able to engage with the health worker's responsibilities in such situations to the individual, the health care system, and the population at large. (shrink)

Attention to individual choice is a valuable dimension of public health policy; however, the creation of effective public health programmes requires policy makers to address the material and social structures that determine a person’s chance of actually achieving a good state of health. This statement summarizes a well understood and widely held view within public health practice. In this article, we (i) argue that advocates for public health can and should defend this emphasis on ‘structures’ by reference to citizen autonomy (...) and not simply by emphasizing concern for counter-balancing values such as ‘population health’ or ‘fairness’, (ii) map and critically explore the contrasting conceptions of autonomy that feature in such debates, with particular attention to conceptions of autonomy that might feature in the defence of an emphasis on structures. We draw on (i) a relational conception of autonomy and (ii) the distinction that can be made between autonomous deliberation and autonomous action to suggest that offering people the opportunity to make choices about their health without also supporting their capability to achieve the object of these choices falls short of what is often considered to be morally and politically important about promoting autonomy in relation to health. (shrink)

Some empirical findings seem to show that people value health benefits differently depending on the age of the beneficiary. Health economists and philosophers have offered justifications for these preferences on grounds of both efficiency and equity. In this paper, I examine the most prominent examples of both sorts of justification: the defence of age-weighting in the WHO's global burden of disease studies and the fair innings argument. I argue that neither sort of justification has been worked out in satisfactory form: (...) age should not be taken into account in the framework of the burden of disease measure, and on the most promising formulations of the fair innings argument, it turns out to be merely an indicator of some other factor. I conclude by describing the role of age in theories of justice of healthcare resource allocation. (shrink)

Is there a rational and ethical basis for efforts to rescue individuals in dire straits? When does rescue have ethical support, and when does it reflect an irrational impulse? This paper defines a Rule of Rescue and shows its intuitive appeal. It then proceeds to argue that this rule lacks support from standard principles of justice and from ethical principles more broadly, and should be rejected in many situations. I distinguish between agent-relative and agent-neutral reasons, and argue that the Rule (...) of Rescue qualifies only in a narrow range of cases where agent-relative considerations apply. I conclude that it would be wise to set aside the Rule of Rescue in many cases, especially those involving public policies, where it has only weak normative justification. The broader implications of this analysis are noted. (shrink)

Many societies, and nearly all wealthy, developed countries, provide universal access to a broad range of public health and personal medical services. Is such access to health care a requirement of social justice, or is it simply a matter of social policy that some countries adopt and others do not? If it is a requirement of social justice, we should be clear about what kinds of care we owe people and how we determine what care is owed if we cannot (...) possibly meet every health need, as arguably no society can. We should be clear about what constitutes appropriate access to that care, given that there are diverse barriers to access. We must also be able to say why we owe these things as a matter of justice, and, of course, different accounts of social justice will bake and serve this cake in different ways. (shrink)

Ethics guidance and ethical frameworks are becoming more explicit and prevalent in health policy proposals. However, little attention has been given to evaluating their roles and impacts in the policy arena. Before this can be investigated, fundamental questions must be asked about the nature of ethics in relation to policy, and about the nexus of the fields of applied ethical analysis and health policy analysis. This paper examines the interdisciplinary stretch between bioethics and health policy analysis. In particular, it highlights (...) areas of scholarship where a health policy ethicsspecialization—as distinctive from bioethics—might develop to address health policy concerns. If policy and ethics both ask the same question, that question is: “What is the good, and how do we achieve (create, protect, cultivate) it?” To answer this question, the new field of “health policy ethics” requires development. First, we should develop a full set of ethical principles and complementary ethical theories germane to public policy per se. Second, we must understand better how explicit attention to ethical concerns affects policy dynamics. Third, we require new policy and ethical analytic approaches that contribute to constructive (not obstructive) policy making. Finally, we need indicators of robust, high quality ethical analysis for the purpose public policy making. (shrink)