In this paper, we give an account of some of the necessary conditions for an effectively functioning public sphere, and then explore the question of whether these conditions allow for the expression of ideas and values that are fundamentally incompatible with those of liberalism. We argue that speakers who advocate or glorify violence against democratic institutions fall outside the parameters of what constitutes legitimate public debate and may in fact undermine the conditions necessary for the flourishing of free speech and (...) public dialogue more generally. (shrink)

This book offers an original account of a distinctly republican theory of social and global justice. The book starts by exploring the nature and value of Hegelian recognition theory. It shows the importance of that theory for grounding a normative account of free and autonomous agency. It is this normative account of free agency which provides the groundwork for a republican conception of social and global justice, based on the core-ideas of freedom as non-domination and autonomy as non-alienation. As the (...) author argues, republicans should endorse a sufficientarian account of social justice, which focuses on the nature of social relationships and their effects on people's ability to act freely and realize their fundamental interests. On the global level, the book argues for the cosmopolitan extension of the republican principles of non-domination and non-alienation within a multi-level democratic system. In so doing, the book addresses a major gap in the existing literature, presenting an original theory of justice, which combines Hegelian recognition theory and republican ideas of freedom, and applying this hybrid theory to the global domain. Fabian Schuppert creates a grand synthesis uniting neo-republican insights on freedom with Hegelian recognition theory. The result is an account of agency that arises from the idea of non-domination whose aim it is to safeguard individual freedom. When combined with Hegelian recognition theory a social focus also emerges. This amalgam comments on many of the major disputes concerning global justice from a cosmopolitan perspective. Because of the broad scope and the many contemporary discussions engaged this book will be of keen interest to scholars as well as a welcome addition to the classroom. (shrink)

In “How the Neuroscience of Decision Making Informs Our Conception of Autonomy,” Gidon Felsen and Peter Reiner (2011) argue that decisions typically regarded as rational and autonomous are in fact...

Respect for patient autonomy is paramount in resolving ethical tensions in end-of-life care. The concept of relational autonomy has contributed to this debate; however, scholars often use this concept in a fragmented manner. This leads to partial answers on ascertaining patients’ true wishes, meaningfully engaging patients’ significant others, balancing interests among patients and significant others, and determining clinicians’ obligations to change patients’ unconventional convictions to enhance patient autonomy. A satisfactory solution based on relational autonomy must incorporate patients’ competence (apart from (...) decisional capacity), authenticity (their true desires or beliefs) and the involvement level of their significant others. To that end, we argue that John Christman’s procedural approach to relational autonomy provides critical insights, such as the diachronic or socio-historical personhood, sustained critical reflection and his recent explication of the nature of asymmetrical relationships and helpful interlocutors. This study reviews Christman’s account, proposes minor modifications and advocates for an integrated three-dimensional model for medical decision-making. Clarifying the relationship among the three elements promotes an ethical framework with a coherent understanding of relational autonomy. This model not only provides a descriptive and normative framework for end-of-life care practice but also reconsiders the nature of the clinician–patient relationship and its normative implications. We further present a case study to illustrate the merits of our proposed model. Altogether, our proposal will help navigate complex medical decision-making, foster trust and negotiate shared values between patients and their significant others, particularly in end-of-life care. (shrink)

Can autonomous systems replace humans in the performance of their activities? How does the answer to this question inform the design of autonomous systems? The study of technical systems and their features should be preceded by the study of the activities in which they play roles. Each activity can be described by its overall goals, governing norms and the intermediate steps which are taken to achieve the goals and to follow the norms. This paper uses the activity realist approach to (...) conceptualize autonomous systems in the context of human activities. By doing so, it first argues for epistemic and logical conditions that illustrate the limitations of autonomous systems in tasks which they can and cannot perform, and then, it discusses the ramifications of the limitations of system autonomy on the design of autonomous systems. (shrink)

This paper proposes a novel relational view of autonomy designed to overcome the inadequacies of procedural and substantive views of autonomy as they relate to physician-assisted suicide requests for individuals with diminished cognitive functioning. Traditional and other relational views of autonomy regard a patient as an “isolated monad,” ignore patients with limited personal autonomy, and overlook the contexts in which decisions like PAS are made. However, these weaknesses become the strengths of a synthesized relational view of autonomy, which enhances the (...) personal autonomy of those with limited personal autonomy so that their PAS requests can be granted. (shrink)

In this essay, we consider questions arising from cases in which people request medical assistance in dying (MAiD) in unjust social circumstances. We develop our argument by asking two questions. First, can decisions made in the context of unjust social circumstance be meaningfully autonomous? We understand ‘unjust social circumstances’ to be circumstances in which people do not have meaningful access to the range of options to which they are entitled and ‘autonomy’ as self-governance in the service of personally meaningful goals, (...) values and commitments. People in these circumstances would choose otherwise, were conditions more just. We consider and reject arguments that the autonomy of people choosing death in the context of injustice is necessarily reduced, either by restricting their options for self-determination, through their internalisation of oppressive attitudes or by undermining their hope to the point that they despair.Second, should MAiD be available to people in such circumstances, even when a sound argument can be made that the agents in question are autonomous? In response, we use a harm reduction approach, arguing that even though such decisions are tragic, MAiD should be available. Our argument engages with relational theories of autonomy as well as recent criticism raised against them and is intended to be general in application, although it emerges in response to the Canadian legal regimen around MAiD, with a focus on recent changes in Canada’s eligibility criteria to qualify for MAiD. (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)

The principle of respect for autonomy in clinical ethics is frequently linked to bioethics’ neglect of community-level ethical considerations. I argue that the latter is not an inevitable consequence of the former; rather, that neglect results from a common interpretation of respect for autonomy in solely synchronic and individual terms. A relational understanding of autonomy reveals the way in which respect inescapably involves diachronic and social dimensions. When these are acknowledged, the association between respect for autonomy and liberal individualism is (...) weakened. Such respect has more in common with communitarian approaches, and it need not conflict with the incorporation of collective-level values into ethical deliberation. (shrink)

Felicitas Kraemer draws on the experiences of patients undergoing deep-brain stimulation to propose two distinct and potentially conflicting principles of respect: for an individual's autonomy , and for their authenticity. I argue instead that, according to commonly-invoked justifications of respect for autonomy, authenticity is itself in part constitutive of an analysis of autonomy worthy of respect; Kraemer's argument thus highlights the shortcomings of practical applications of respect for autonomy that emphasise competence while neglecting other important dimensions of autonomy such as (...) authenticity, since it shows that competence alone cannot be interpreted as a reliable indicator of an individual's capacity for exercising autonomy. I draw from relational accounts to suggest how respect for a more expansive conception of autonomy might be interpreted for individuals undergoing DBS and in general. (shrink)

Recent criticism of the role of respect for autonomy in bioethics has focused on that principle's status as ‘dogma’ or ‘ideology’. I suggest that lying beneath many applications of respect for autonomy in medical ethics are some influential dogmas — propositions accepted, not as explicit premises or as a consequence of reasoned argument, but simply because moral problems are so frequently framed in such terms. Furthermore, I will argue that rejecting these dogmas is vital to secure and protect an autonomy (...) worthy of respect. The concept of autonomy that is widely applied in clinical ethics emphasises decision-making competence, at the expense of considering the authenticity of those decisions. Respect for such autonomy is interpreted in largely synchronic and individual terms — concerned with the isolated decisions of individual agents — and thus neglects the diachronic and social dimensions of many moral dilemmas arising in the health care context. I will examine how these unwritten rules lead to an impoverished understanding of respect and a systematic neglect in bioethics of certain kinds of ethical consideration, and draw on insights from feminist and communitarian work on autonomy to sketch an alternative approach to understanding respect, modelled on the norms of respectful conversation — a respect that is firstly concerned with engaging with the another as a potential giver and bearer or reasons, and working with them to promote both individual and social flourishing. (shrink)

This essay explores three issues in respect for autonomy that pose unfinished business for the concept. By this, I mean that the dialogue over them is ongoing and essentially unresolved. These are: whether we ought to respect persons or their autonomous choices; the role of relational autonomy; and whether nonhuman animals can be autonomous. In attending to this particular set of unfinished business, I highlight some critical moral work left aside by the concept of respect for autonomy as understood in (...) Beauchamp and Childress’ Principles of Biomedical Ethics. Specifically, while significant pragmatic traction is gained by the authors’ focus on autonomous choice, carving such a focus out from the broader questions of moral respect and the autonomy of the person leaves aside a number of questions that we might have thought a view about respect for autonomy in biomedicine ought to answer. These include: How should physicians respond when autonomous patients make decisions that appear nonautonomous? What is the impact of the view that autonomy is “relational” for cross-cultural differences in how autonomy is respected? If chimpanzees can be autonomous, what does that mean for how they should be treated? (shrink)

The ethical debate about neurotechnologies—including both drugs and implanted devices—has been largely framed around the questions of whether and when these technologies could damage or promote authenticity. Patients can experience changes in mood, behavior, emotion, or preferences—seemingly, changes in character or personality. Some describe such changes by saying they feel like different people; that they have become either more or less themselves; or that they feel as though some of their moods, behaviors, emotions or preferences are not their own. These (...) kinds of statements are used to describe both changes that a drug or device is... (shrink)

An authoethnography explores the lived experiences of patients being in control and self-managing their chronic illness among their families and friends. Findings show that the current health discourse narrows down people to mere patients and gives rise to tensions. This article indicates that people with one or several chronic illnesses or disabilities are first of all full citizens with needs, values, and drives seeking a meaningful life. Fair possibilities ought to exist to satisfy their needs to belong, to care for (...) and to matter to others since these constitute an essential aspect of being human. (shrink)

In this paper I show the short-comings of autonomy-based justifications for exemptions from paternalism and appeal to the value of settling to defend an alternative well-being-based justification. My well-being-based justification, unlike autonomy-based justifications, can 1) explain why adults but not children are exempt from paternalism; 2) show which kinds of paternalism are justified for children; 3) explain the value of the capacity of autonomy; 4) offer a plausible relationship between autonomy and exemption from paternalism; and 5) give political philosophers a (...) justification for exempting persons from paternalism even if broad scepticism about the capacity for autonomy is justified. (shrink)

This study aims to develop guidelines of key concepts and specific considerations to make the research more ethical when conducting neurological examinations and treatment interventions in mentally ill patients. We analyzed guideline development theory and literature, previous issues, and discussions with specialists of philosophy, medicine, sociology, and bioethics. The selection of research participants, drafting of intervention plans, and informed consent process were examined with reference to the dual burden; the minimal risk as a general rule of ethical allowance levels, assent (...) and dissent to assess the individual’s judgment capacity for consent, relational autonomy for personal consent with assistance by the proxy, and risk/benefit assessments. When conducting studies, this guideline requires that these three processes be set up appropriately on a case-by-case basis. (shrink)

The concept of paternalism is intricately tied to the concept of autonomy. It is commonly assumed that when paternalistic interventions are wrong, they are wrong because they impede individuals’ autonomy. Our aim in this paper is to show that the recent shift towards conceiving of autonomy relationally highlights a separate conceptual space for a nonpaternalistic kind of interpersonal intervention termed maternalism. We argue that maternalism makes a twofold contribution to the debate over the ethics of interpersonal action and decision-making. Descriptively, (...) it captures common experiences that, while not unusual in everyday life, are largely absent from the present discussion. Normatively, it describes a type of intervention with justification conditions distinct from the standard framework of paternalism. We explicate these contributions by describing six key differences between maternalism and paternalism, and conclude by anticipating and responding to potential objections. (shrink)

The received view in medical contexts is that informed consent is both necessary and sufficient for patient autonomy. This paper argues that informed consent is not sufficient for patient autonomy, at least when autonomy is understood as a "relational" concept. Relational conceptions of autonomy, which have become prominent in the contemporary literature, draw on themes in the thought of Charles Taylor. I first identify four themes in Taylor's work that together constitute a picture of human agency corresponding to the notion (...) of agency implicit in relational accounts of autonomy. Drawing on these themes, I sketch two arguments against the position that informed consent secures autonomy. The first is that informed consent is an "opportunity" concept whereas autonomy is an "exercise" concept; the second is that informed consent requires merely weak evaluation and not strong evaluation. On Taylor's analysis of agency, strong evaluation is required for agency and for autonomy. (shrink)

Harm reduction has been advocated to address a diverse range of public health concerns. The moral justification of harm reduction is usually presumed to be consequentialist because the goal of harm reduction is to reduce the harmful health consequences of risky behaviors, such as substance use. Harm reduction is contrasted with an abstinence model whose goal is to eradicate or reduce the prevalence of such behaviors. The abstinence model is often thought to be justified by ‘deontological’ considerations: it is claimed (...) that many risky behaviors are morally unacceptable, and therefore that we have a moral obligation to recommend abstinence. Because harm reduction is associated with a consequentialist justification and the abstinence model is associated with a deontological justification, the potential for a deontological justification of harm reduction has been overlooked. This paper addresses this gap. It argues that the moral duty to protect autonomy and dignity that has been advocated in other areas of medical ethics also justifies the public health policy of harm reduction. It offers two examples—the provision of supervised injection sites and the Housing First policy to address homelessness—to illustrate the argument. (shrink)

ABSTRACTThe aim of this paper is to draw attention to an issue which has been largely overlooked in contemporary just war theory – namely the impact that the conditions under which an army is assembled are liable to have on the judgments that are made with respect to traditional principles of jus ad bellum and jus in bello. I argue that the way in which an army is assembled can significantly alter judgments regarding the justice of a war. In doing (...) so, I present and defend a principle of ‘just assembly’ and argue that satisfying this principle is an essential part of any deliberation regarding the justice of a particular conflict. (shrink)

This article discusses the self-respect argument for basic liberties, which is that self-respect is an important good, best supported by basic liberties, and that this yields a reason for the traditional liberty principle. I concentrate on versions of it that contend that self-respect is best supported by basic liberties for reasons related to the recognition that such liberties convey. I first discuss the two standard approaches loosely associated with John Rawls and Axel Honneth. Here self-respect pertains to traits and conduct (...) (Rawls) or to one’s personhood (Honneth). It is argued that these approaches fail to show why self-respect is better supported by the liberty principle than certain alternatives worth taking seriously – unless (in the case of personhood self-respect) self-respect is construed in such a narrow way that it is not a condition for autonomy or welfare in any plausible sense. I then identify a self-attitude that I call “a sense of competence”, which at least shows that the liberty principle is more important to autonomy than what we might otherwise have reasons to believe. (shrink)

Definition of the problem Assistive technologies, including “smart” instruments and artificial intelligence (AI), are increasingly arriving in older adults’ living spaces. Various research has explored risks (“surveillance technology”) and potentials (“independent living”) to people’s self-determination from technology itself and from the increasing complexity of sociotechnical interactions. However, the point at which self-determination of the individual is overridden by external influences has not yet been sufficiently studied. This article aims to shed light on this point of transition and its implications. Arguments (...) The identification of this “tipping point” could contribute to analysis of familiar issues of conflict between the ethical principles of beneficence and respect for autonomy. When using technology in the living spaces of older adults, relationships, among other factors, may play a crucial role in older adult’s self-determination. We find the tipping point to occur subjectively and variably. To this end, the article combines theoretical ethical considerations with two examples from a qualitative study illustrating the perspective of older adults aged 65–85 years. Conclusion The study of the tipping point underscores the importance of perceiving an older person’s perspective. Particularly at the tipping point, this might be the only way to effectively identify whether the individual concerned perceives their self-determination as externally overridden. In conceptualizing the tipping point itself as well as its variability, we might create the basis for a normative call to shift the tipping point to promote self-determination and prevent overriding the will of older adults. We highlight individual, relational, and societal implications of our findings. (shrink)

Ethics settings allow for morally significant decisions made by humans to be programmed into autonomous machines, such as autonomous vehicles or autonomous weapons. Customizable ethics settings are a type of ethics setting in which the users of autonomous machines make such decisions. Here two arguments are provided in defence of customizable ethics settings. Firstly, by approaching ethics settings in the context of failure management, it is argued that customizable ethics settings are instrumentally and inherently valuable for building resilience into the (...) larger socio-technical systems in which autonomous machines operate. Secondly, after defining the preliminary condition of responsibility attribution and demonstrating how ethics settings enable humans to exert control over the outcomes of morally significant incidents, it is shown that ethics settings narrow the responsibility gap. (shrink)

Supported decision-making has been promoted at a policy level and within international human rights treaties as a way of ensuring that people with disabilities enjoy the right to legal capacity on an equal basis with others. However, little is known about the practical issues associated with implementing supported decision-making, particularly in the context of dementia. This study aimed to understand the experiences of people with dementia and their family members with respect to decision-making and their views on supported decision-making. Thirty-six (...) interviews were undertaken with fifty-seven participants across three states in Australia. Interpretative Phenomenological Analysis was used as the methodological approach, with relational autonomy as a theoretical perspective. We identified two overarching themes relating to participants’ experiences with decision-making: “the person in relationship over time” and “maintaining involvement.” Participant views on the practical issues associated with supported decision-making are addressed under the themes of “facilitating decision-making,” “supported decision-making arrangements,” “constraints on decision-making,” and “safeguarding decision-making.” While participants endorsed the principles of supported decision-making as part of their overarching strategy of “maintaining involvement” in decision-making, they recognized that progressive cognitive impairment meant that there was an inevitable transition toward greater involvement of, and reliance upon, others in decision-making. Social and contextual “constraints on decision-making” also impacted on the ability of people with dementia to maintain involvement. These themes inform our proposal for a “spectrum approach” to decision-making involvement among people living with dementia, along with recommendations for policy and practice to assist in the implementation of supported decision-making within this population. (shrink)

Supported decision-making has been promoted at a policy level and within international human rights treaties as a way of ensuring that people with disabilities enjoy the right to legal capacity on an equal basis with others. However, little is known about the practical issues associated with implementing supported decision-making, particularly in the context of dementia. This study aimed to understand the experiences of people with dementia and their family members with respect to decision-making and their views on supported decision-making. Thirty-six (...) interviews were undertaken with fifty-seven participants across three states in Australia. Interpretative Phenomenological Analysis was used as the methodological approach, with relational autonomy as a theoretical perspective. We identified two overarching themes relating to participants’ experiences with decision-making: “the person in relationship over time” and “maintaining involvement.” Participant views on the practical issues associated with supported decision-making are addressed under the themes of “facilitating decision-making,” “supported decision-making arrangements,” “constraints on decision-making,” and “safeguarding decision-making.” While participants endorsed the principles of supported decision-making as part of their overarching strategy of “maintaining involvement” in decision-making, they recognized that progressive cognitive impairment meant that there was an inevitable transition toward greater involvement of, and reliance upon, others in decision-making. Social and contextual “constraints on decision-making” also impacted on the ability of people with dementia to maintain involvement. These themes inform our proposal for a “spectrum approach” to decision-making involvement among people living with dementia, along with recommendations for policy and practice to assist in the implementation of supported decision-making within this population. (shrink)

In this paper I will examine how the Mental Capacity Act 2005 regulates the assessment of decision-making capacity in England and Wales. I will argue that there are difficulties in reconciling the Act with how people make decisions in practice. I will explore how ideas from the ethics of care and from phenomenology can be used to take better account of how capacity flows from a person's relationships as well as their individual abilities. I will conclude by discussing some of (...) the ethical issues that have arisen in my assessments of decision-making capacity and how I have tried to respond. (shrink)

The necessity of consent is widely justified on the basis of the principle of respect for autonomy. Also, it is widely believed that shared decision making (SDM) is the practical device to seek patients’ consent for medical treatment. In this essay, I argue that SDM, while necessary, is insufficient for consent; because, in the paradigm of evidence-based medicine, SDM is contingent upon other practices to identify appropriate treatments that form the subjects of SDM. Indeed, case law emphasises normative decision-making practices (...) that precede SDM. Furthermore, case law supplies a nuanced understanding of SDM, which includes not only exchange of information but also attention to human vulnerability that persists despite formal retention of decision-making capacity. In addition, the law marks out a space in which people with capacity are absolutely entitled to self-determination. Thus, a four-step framework of decision making can be induced from legal doctrine. This legal framework corresponds to a construct of respect for autonomy that draws upon feminist theory. Feminist scholars have objected to the focus on individuals in traditional theories of autonomy; instead, they insist that people have to be considered in the context of their social influences and relationships. Feminists separate out four ideas of autonomy, and these ideas can be used to construct a four-layered model of respect for autonomy, in which each layer corresponds sequentially to a step in the legal framework of decision making. This model of respect for autonomy provides both conceptual clarity and theoretically robust justification for doctors’ various obligations in decision-making practices for consent. (shrink)

The decision of the High Court in Bell v Tavistock has excited considerable discussion about lawful consent for puberty-blocking drug treatment for children with gender dysphoria. The present paper draws attention to a wider question that surfaces through this case: is informed decision-making an adequate practical tool for seeking and obtaining patients’ consent for medical treatment? Informed decision-making engages the premises of the rational choice theory: that people will have well-crystallised health goals; and, if they are provided with sufficient information (...) about medical treatments, then they will be able to choose the treatment that satisfies their goals. Whilst appealing, the informed decision-making paradigm is assailed by various fallacies, which apply not only to children but also to adults. In Bell v Tavistock, the High Court seems to have recognised such fallacies, and it rejected informed decision-making as an adequate tool for consent from children with gender dysphoria. Similar considerations apply to adults in various situations. Thus, Bell v Tavistock can be seen as an attempt to refine the views on the consent that were expressed by the Supreme Court in Montgomery. It can be inferred that the Supreme Court did recognise the limitations of informed decision-making, but it did not develop this point. Further work is required to formulate an adequate model of decision-making, and Bell v Tavistock serves as a useful reminder to rethink informed decision-making as the device for consent. (shrink)

In this paper, I question the view that liberal perfectionism and neutrality are mutually exclusive doctrines. I do so by criticizing two claims made by Jonathan Quong. First, I object to his claim that comprehensive anti-perfectionism is incoherent. Second, I criticize his claim that liberal perfectionism cannot avoid a paternalist stance. I argue that Quong’s substantive assumptions about personal autonomy undermine both of his arguments. I use the discussion of Quong to argue that the standard assumption in liberal theory about (...) mutual exclusivity of liberal perfectionism and neutrality needs to be reconsidered, and I show why the argument about the convergence of perfectionism and neutrality makes conceptual sense. (shrink)

Problems arise when applying the current procedural conceptualization of decision-making capacity to paediatric healthcare: Its emphasis on content-neutrality and rational cognition as well as its implicit assumption that capacity is an ability that resides within a person jeopardizes children’s position in decision-making. The purpose of the paper is to challenge this dominant account of capacity and provide an alternative for how capacity should be understood in paediatric care. First, the influence of developmental psychologist Jean Piaget upon the notion of capacity (...) is discussed, followed by an examination of Vygostky’s contextualist view on children’s development, which emphasizes social interactions and learning for decision-making capacity. In drawing parallels between autonomy and capacity, substantive approaches to relational autonomy are presented that underline the importance of the content of a decision. The authors then provide a relational reconceptualization of capacity that leads the focus away from the individual to include important social others such as parents and physicians. Within this new approach, the outcome of adults’ decision-making processes is accepted as a guiding factor for a good decision for the child. If the child makes a choice that is not approved by adults, the new conceptualization emphasizes mutual exchange and engagement by both parties. (shrink)

Biomedical innovations are making possible the enhancement of human capabilities. There are two philosophical stances on the role that medicine should play in this respect. On the one hand, naturalism rejects every medical intervention that goes beyond preventing and treating disease. On the other hand, welfarism advocates enhancements that foster subjective well-being. We will show that both positions have considerable shortcomings. Consequently, we will introduce a third characterization in which therapies and enhancements can be reconciled with the legitimate objectives of (...) medicine inasmuch as they improve the capabilities that enable the freedom to pursue personal well-being. (shrink)

The concept of futility in medicine refers to the incapability of an intervention to achieve its goal. Futility determinations form the basis for withholding and withdrawing life-sustaining interventions. Criticisms of attempted futility definitions relate to inconstant probability and value judgements concerning the goal pursued. This variability frustrates efforts to define futility. Language modifications and procedural approaches, both important ancillary measures, inherently lack the ability to resolve this difficulty. Beneath the notion of futility lie foundational factors whose revised understanding is required (...) to advance a definition. These factors include autonomy, death and the goals of medicine. Reconsidering the essence and influence of foundational factors is necessary to move beyond a seemingly irresolvable problem. In this essay, I assert that defining futility is not pointless but rather possible, necessary and unavoidable. With this assertion, I respond to the criticisms of futility. These responses together with a corrective understanding of foundational factors lead to a definition of futility. This definition balances respect for patients’ autonomy whilst allowing for interventions that do not undermine the essence of medicine and integrity of those practising it. Defining futility is an exercise in necessity requiring renewed perceptual foundations. (shrink)

This article argues that supported decision making is ideal for people with dynamic cognitive and functional impairments that place them at the margins of autonomy. First, we argue that guardianship and similar surrogate decision-making frameworks may be inappropriate for people with dynamic impairments. Second, we provide a conceptual foundation for supported decision making for individuals with dynamic impairments, which integrates the social model of disability with relational accounts of autonomy. Third, we propose a three-step model that specifies the necessary conditions (...) of supported decision making: identifying domains for support; identifying kinds of supports; and reaching a mutually acceptable and formal agreement. Finally, we identify a series of challenges for supported decision making, provide preliminary responses, and highlight avenues for future bioethics research. (shrink)

Contemporary clinical ethics was founded on principlism, and the four principles: respect for autonomy, nonmaleficence, beneficence and justice, remain dominant in medical ethics discourse and practice. These principles are held to be expansive enough to provide the basis for the ethical practice of medicine across cultures. Although principlism remains subject to critique and revision, the four-principle model continues to be taught and applied across the world. As the practice of medicine globalizes, it remains critical to examine the extent to which (...) both the four-principle framework, and individual principles among the four, suffice patients and practitioners in different social and cultural contexts. Using the four-principle model we analyze two accounts of surrogate decision making – one from the developed and one from the developing world – in which the clinician undertakes medical decision-making with apparently little input from the patient and/or family. The purpose of this analysis is to highlight challenges in assessing ethical behaviour according to the principlist model. We next describe cultural expectations and mores that inform both patient and clinician behaviors in these scenarios in order to argue that the principle of respect for persons informed by culture-specific ideas of personhood may offer an improved ethical construct for analyzing and guiding medical practice in a globalized and plural world. (shrink)

This paper critically examines the extent to which health promoting wearable technologies can provide people with greater autonomy over their health. These devices are frequently presented as a means of expanding the possibilities people have for making healthier decisions and living healthier lives. We accept that by collecting, monitoring, analysing and displaying biomedical data, and by helping to underpin motivation, wearable technologies can support autonomy over health. However, we argue that their contribution in this regard is limited and that—even with (...) respect to their ‘autonomy enhancing’ potential—these devices may deliver costs as well as benefits. We proceed by rehearsing the distinction that can be drawn between procedural autonomy and substantive-relational autonomy. While the information provided by wearable technologies may support deliberation and decision-making, in isolation these technologies do little to provide substantive opportunities to act and achieve better health. As a consequence, wearable technologies risk generating burdens of anxiety and stigma for their users and reproducing existing health inequalities. We then reexamine the extent to which wearable technologies actually support autonomous deliberation. We argue that wearable technologies that subject their users to biomedical and consumerist epistemologies, norms and values also risk undermining processes of genuinely autonomous deliberation. (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)

This article seeks to explore and analyze the relationship between autonomy and trust, and to show how these findings could be relevant to medical ethics. First, I will argue that the way in which so-called “relational autonomy theories” tie the notions of autonomy and trust together is not entirely satisfying Then, I will introduce the so-called Encapsulated Interest Account as developed by Russell Hardin. This will bring out the importance of the reasons for trust. What good reasons do we have (...) for trusting someone? I will criticize Hardin’s business model as insufficiently robust, especially in the context of health care, and then turn to another source of trust, namely, love. It may seem that trust-through-love is much better suited for the vulnerability that is often involved in health care, but I will also show that it has its own deficiencies. Good health care should therefore pay attention to both models of trust, and I will offer some tentative remarks on how to do this. (shrink)

This essay defends a strong right against displacement as part of a basic individual right to secure access to one’s home. The analysis is purposefully situated within the difficult context of climate change adaptation policies. Under increasing environmental pressures, especially regarding water security, there are weighty reasons motivating the forced displacement of persons—to safeguard water resources or prevent water-related disasters. Even in these pressing circumstances, I argue, individuals have weighty rights to secure access to their homes. I explain how the (...) home provides a functional context for conditions of autonomous agency. Being coerced from the home disrupts and subverts the conditions necessary for autonomous processes. I conclude by suggesting that the right to the home could be a foundational element of territorial rights. (shrink)

The COVID-19 pandemic during 2020–2022 raised ethical questions concerning the balance between individual autonomy and the protection of the population, vulnerable individuals and the healthcare system. Pediatric COVID-19 vaccination differs from, for example, measles vaccination in that children were not as severely affected. The main question concerning pediatric vaccination has been whether the autonomy of parents outweighs the protection of the population. When children are seen as mature enough to be granted autonomy, questions arise about whether they have the right (...) to decline vaccination and who should make the decision when parents disagree with each other and/or the child. In this paper, I argue that children should be encouraged to not only take responsibility for themselves, but for others. The discussion of pediatric vaccination in cases where this kind of risk–benefit ratio exists extends beyond the 2020–2022 pandemic. The pandemic entailed a question that is crucial for the future of public health as a global problem, that is, to what extent children should be seen as responsible decision-makers who are capable of contributing to its management and potential solution. I conclude that society should encourage children to cultivate such responsibility, conceived as a virtue, in the context of public health. (shrink)

Social inclusion can refer to the ability of individuals and groups to participate in social activities and the extent to which they feel included and recognized as valuable and able to make contributions. I explore the social inclusion of children in K-12 education (ages 4 - 18), and argue it is vital for the development and exercise of attitudes and capacities such as hope and local autonomy. Since schools are tasked with developing children's skills and knowledge, the extent to which (...) they succeed will play a large role in limiting or enabling children's social inclusion both when they become adults and as children. Children's relationships are an important aspect of their school experiences, as they affect not only whether they feel connected to others but also what they deem to be the grounds of their inclusion. Schools can also equip children with the skills and experiences required for social interactions with others in better and worse ways, fostering children's attitudes towards themselves, others, and the world and affecting whether they think they have the resources to have an impact on their environment and society and can achieve both personal and shared goals. (shrink)

Cost conversations are essential to informed consent because patients have a right to information that they think is relevant, and patients overwhelmingly report that cost information is relevant to their medical decisions. Providers have an ethical responsibility to provide necessary information for informed consent, and therefore must discuss costs. The Shared Decision Making model is ideal for enabling this exchange of information, and decision aids are also helpful. Although barriers exist, many useful tools can help providers fulfill this obligation, and (...) encouraging progress is being made to improve cost transparency from insurers and facilities. (shrink)

Mainstream breast cancer social movements such as that of Susan G. Komen have called on all women to race or fight for the cure for breast cancer. They suggest that the fight can be won by buying and wearing pink ribbons, taking part in races and walks, donating money, and participating in research. For some patients with breast cancer, research participation may involve non-diagnostic tumor biopsies. While this clinical research is performed in the hope of gaining new knowledge through the (...) removal and study of breast cancer tissue, these procedures have been heavily criticized because they offer little potential benefit to the patient providing the tissue (Helft and Daugherty 2006; Kimmelman et al. 2012;... (shrink)

Background: In 2014, companies began covering the costs of egg freezing for their employees. The adoption of this benefit was highly contentious. Some argued that it offered women more reproductive...

In the last decade, Family Group Conferences have increasingly been used to help people and their networks deal with their problems. The FGC fits well with the call for equal rights and self-management coming from clients and client movements, as well as the economy-driven pressure towards more informal and less professional care coming from governments. However, there is a lack of knowledge about the underlying theory to explain how the FGC works. In this article, we aim to provide such a (...) theoretical basis by examining how the concept of empowerment can be linked with the basic assumptions underlying the FGC. Can making a plan of their own indeed help to empower people and if so, how does the process of empowerment proceed? Empowerment is often mentioned as a goal of the FGC, but authors are not unanimous when it comes to the operationalisation of empowerment, especially on the relational level of the person in his or her social context. In the article, we use the concepts of relational autonomy and resilience to conceptualize empowerment on the relational and individual level. (shrink)

Theories of collective intentionality and theories of relational autonomy share a common interest in analyzing the social dynamics of agency. However, whereas theories of collective intentionality conceive of social groups primarily as intentional and voluntarily willed, theories of relational autonomy claim that autonomous agency is both scaffolded and constrained by social forces and structures, including the constraints imposed by nonvoluntary group membership. The question raised by this difference in view is whether social theorizing that overlooks the effects of nonvoluntary social (...) group membership on individual and joint agency overlooks crucial aspects of the social dynamics of agency. To explore this question, this article first evaluates Michael Bratman's planning analysis of individual agency from the perspective of relational autonomy theory and compares it with a narrative self‐constitution account of temporally extended agency. It then evaluates Bratman's analysis of shared agency and discusses Shaun Gallagher and Deborah Tollefsen's concept of we‐narratives, which extends the notion of narrative construction to shared agency. Overall, the argument aims to show that if we are interested in understanding the social dynamics of agency, it is critical to attend to the way that agents exercise their intentional agency in relation to internalized and external social constraints. (shrink)