Background: Working as an ambulance nurse involves facing ethically problematic situations with multi-dimensional suffering, requiring the ability to create a trustful relationship. This entails a need to be clinically trained in order to identify ethical conflicts. Aim: To describe ethical conflicts in patient relationships as experienced by ambulance nursing students during clinical studies. Research design: An exploratory and interpretative design was used to inductively analyse textual data from examinations in clinical placement courses. Participants: The 69 participants attended a 1-year educational (...) programme for ambulance nurses at a Swedish university. Ethical consideration: The research was conducted in accordance with the Declaration of Helsinki. Participants gave voluntary informed consent for this study. Findings: The students encountered ethical conflicts in patient relationships when they had inadequate access to the patient’s narrative. Doubts regarding patient autonomy were due to uncertainty regarding the patient’s decision-making ability, which forced students to handle patient autonomy. Conflicting assessments of the patient’s best interest added to the conflicts and also meant a disruption in patient focus. The absence of trustful relationships reinforced the ethical conflicts, together with an inadequacy in meeting different needs, which limited the possibility of providing proper care. Discussion: Contextual circumstances add complexity to ethical conflicts regarding patient autonomy, dependency and the patient’s best interest. Students felt they were fluctuating between paternalism and letting the patient choose, and were challenged by considerations regarding the patient’s communication and decision-making ability, the views of third parties, and the need for prioritisation. Conclusion: The essence of the patient relationship is a struggle to preserve autonomy while focusing on the patient’s best interest. Hence, there is a need for education and training that promotes ethical knowledge and ethical reflection focusing on the core nursing and caring values of trust and autonomy, particularly in situations that affect the patient’s decision-making ability. (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)

Interactions between an intelligent software agent and a human user are ubiquitous in everyday situations such as access to information, entertainment, and purchases. In such interactions, the ISA mediates the user’s access to the content, or controls some other aspect of the user experience, and is not designed to be neutral about outcomes of user choices. Like human users, ISAs are driven by goals, make autonomous decisions, and can learn from experience. Using ideas from bounded rationality, we frame these interactions (...) as instances of an ISA whose reward depends on actions performed by the user. Such agents benefit by steering the user’s behaviour towards outcomes that maximise the ISA’s utility, which may or may not be aligned with that of the user. Video games, news recommendation aggregation engines, and fitness trackers can all be instances of this general case. Our analysis facilitates distinguishing various subcases of interaction, as well as second-order effects that might include the possibility for adaptive interfaces to induce behavioural addiction, and/or change in user belief. We present these types of interaction within a conceptual framework, and review current examples of persuasive technologies and the issues that arise from their use. We argue that the nature of the feedback commonly used by learning agents to update their models and subsequent decisions could steer the behaviour of human users away from what benefits them, and in a direction that can undermine autonomy and cause further disparity between actions and goals as exemplified by addictive and compulsive behaviour. We discuss some of the ethical, social and legal implications of this technology and argue that it can sometimes exploit and reinforce weaknesses in human beings. (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)

The dominant, individualistic understanding of autonomy that features in clinical practice and research is underpinned by the idea that people are, in their ideal form, independent, self-interested and rational gain-maximising decision-makers. In recent decades, this paradigm has been challenged from various disciplinary and intellectual directions. Proponents of ‘relational autonomy’ in particular have argued that people’s identities, needs, interests – and indeed autonomy – are always also shaped by their relations to others. Yet, despite the pronounced and nuanced critique directed at (...) an individualistic understanding of autonomy, this critique has had very little effect on ethical and legal instruments in clinical practice and research so far. In this article, we use four case studies to explore to what extent, if at all, relational autonomy can provide solutions to ethical and practical problems in clinical practice and research. We conclude that certain forms of relational autonomy can have a tangibl... (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)

Health services internationally struggle to ensure health care is “person-centered” (or similar). In part, this is because there are many interpretations of “person-centered care” (and near synonyms), some of which seem unrealistic for some patients or situations and obscure the intrinsic value of patients’ experiences of health care delivery. The general concern behind calls for person-centered care is an ethical one: Patients should be “treated as persons.” We made novel use of insights from the capabilities approach to characterize person-centered care (...) as care that recognizes and cultivates the capabilities associated with the concept of persons. This characterization unifies key features from previous characterisations and can render person-centered care applicable to diverse patients and situations. By tying person-centered care to intrinsically valuable capability outcomes, it incorporates a requirement for responsiveness to individuals and explains why person-centered care is required independently of any contribution it may make to health gain. (shrink)

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)

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)

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)

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)

Approaches to supporting autonomy in medicine need to be able to support complex and sensitive decision-making, incorporating reflection on the patient's values and goals. This should involve deliberation in partnership between physician and patient, allowing the patient to take responsibility for her decision. Nowhere is this truer than in decisions around pregnancy and Caesarean section where maternal autonomy can seem to directly conflict with foetal interests. Medical and societal expectations and norms such as the expectations of a ‘mother’, constraints of (...) making decisions in an emergency, and the role of technology in viewing the foetus as a separate patient and surgery as a guarantor of results can all act to limit a woman's autonomy. In considering decisions about Caesarean section, maternal interests in bodily integrity can be dismissed as being less important than the foetus's own interests and the mother's duties to it, despite the inherent risks and impacts of such a major surgical procedure... (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)

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)

Feminists have disagreed about whether women can choose gendered subordination autonomously. Less attention has been paid, however, to the socio-ontological questions that underlie this debate. This article introduces novel cases of ‘thwarted autonomy,’ in which women pursue autonomy but in ways that reinforce gendered subordination, in order to challenge dominant proceduralist and substantivist views, as well as motivate an expressivist view of the social self as a promising foundation for an account of autonomy. On this view, which draws on the (...) Hegelian tradition, agents must embody their desires and values in the social world to achieve self-understanding. Social meanings and norms therefore mediate the form an agent’s expressive activity takes, and the sense of self she develops. An expressivist view, I argue, allows us to reinterpret women’s outward acquiescence to gendered subordination as an attempt to express autonomy in an oppressive social context. It also points towards a robustly social conception of autonomy to aid in the diagnosis and redress of patriarchal oppression. (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)

This thesis explores the relationship between the capability approach to justice and liberal philosophy. I argue that the most compelling articulation of the capability approach—one given by Martha Nussbaum—suffers from an unattractive kind of inconsistency. On the one hand, Nussbaum is committed to formulating a robust account of a dignified human life which can give rise to a range of individual entitlements which ought to be guaranteed to all individuals. On the other hand, Nussbaum is committed to political liberalism which (...) requires state institutions to uphold strict neutrality between a variety of reasonable conceptions of the good. Nussbaum’s first commitment results in the formulation of a list of ten central human capabilities. However, I argue that the content and justification of this list cannot be successfully established in a way that is consistent with Nussbaum’s second commitment. Therefore, in this thesis, I propose a novel capability approach: a two-step approach which consists of two principles arranged in lexical priority. First, governments have a moral obligation to secure individuals with a meta-capability of autonomy. That is to say, governments must provide the conditions which are conducive to individuals exercising a range of agentic competencies which are constitutive of autonomous judgement. Second, governments have a moral obligation to provide opportunities for individuals to exercise this meta-capability in six domains of well-being: health, politics, knowledge, relationships, self-expression, and work. I argue that exercising autonomous choice in the pursuit of welfare is necessary for a good life, regardless of the specific choices individuals eventually make, and even if they choose to forgo some supposedly valuable choices altogether. My proposal has two striking features which set it apart from other articulations of the capability approach. First, my proposal is comprehensive in that it relies on a particular view about what is a valuable way of life. In my view, a way of life is valuable if it is pursued autonomously, that is to say, if it involves an individual exercising a set of agentic competencies and standing in appropriate relations with other people. And second, by virtue of being based in this particular comprehensive claim, my account of justice is anti-perfectionist. That is to say, my proposal does not aim to compel people to make valuable choices. Rather, it aims to equip people with the means to live the kind of life they find valuable and worth living. I then apply this capability approach to the domain of education, and I argue it can be useful in formulating an ambitious and transformative approach to education. In particular, I develop a program of civic education aimed at responding to the problems associated with disinformation and ‘post-truth’ trends in politics. (shrink)

Being autonomous depends on the kind of relations we enjoy in the different domains of our lives, but the impact of decision-making and the power exercise that takes place in the political sphere, makes political relations crucial to our development and enjoyment of autonomy. This dissertation develops a novel view of political participation by interrogating its connection to our personal autonomy. According to this view, our political relations are partially constitutive of our personal autonomy, which in other words means there (...) is a political aspect of our autonomy. The kind of political relations we should hold to fully enjoy our autonomy is what I call Relations of Mutual Recognition. It is the mutual recognition of each agent’s autonomous standing—translated into a proper distribution of political power— that will face dominating political relations. The basis for that domination comes from our democracies’ power imbalances that condition influence over political decision-making to each individual’s economic, social or cultural standing. Consequently, there are political conditions for our autonomy to thrive. Relations of Mutual Recognition require two main conditions: non-domination and control. I take these two neo-republican ideals and redefine them to shape what a proper distribution of political power amounts to. Political participation comes in precisely to identify a way to challenge power imbalances. Therefore, my definition of political participation, which I call Collective Self-Government, requires a particular sort of implementation. Accordingly, I suggest a deliberative and inclusive arrangement that involves direct and innovative forms of decision-making, and more importantly, grants relevant shares of authority to all actors, i.e., common citizens, legislators, technocrats, etcetera. This project could rightly belong to both a relational approach to autonomy and be labelled as a version of deliberative democracy. However, relational accounts focus on our social relations, whilst I claim that we cannot be “less” or non-autonomous in the political sphere and still enjoy an autonomous life. Likewise, the participatory focus—in the sense of inclusion of all actors—of this proposal more accurately turn it into either a participatory version of deliberative democracy or a deliberative version of participatory democracy. (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...

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)

According to many of its proponents, shared decision making ("SDM") is the right way to interpret the clinician-patient relationship because it respects patient autonomy in decision-making contexts. In particular, medical ethicists have claimed that SDM respects a patient's relational autonomy understood as a capacity that depends upon, and can only be sustained by, interpersonal relationships as well as broader health care and social conditions. This paper challenges that claim. By considering two primary approaches to relational autonomy, this paper argues that (...) standard accounts of SDM actually undermine patient autonomy. It also provides an overview of the obligations generated by the principle of respect for relational autonomy that have not been captured in standard accounts of SDM and which are necessary to ensure consistency between clinical practice and respect for patient autonomy. (shrink)

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)

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)

In recent years a large empirical literature has appeared on suffering at the end of life. In this literature it is recognized that suffering has existential and social dimensions in addition to physical and psychological ones. The non-physical aspects of suffering, however, are still understood as pathological symptoms, to be reduced by therapeutical interventions as much as possible. But suffering itself and the negative emotional states it consists of are intentional states of mind which, as such, make cognitive claims: they (...) are more or less appropriate responses to the actual circumstances of the patient. These circumstances often are such that it would rather be a pathological symptom not to be sad and not to suffer. Suffering, therefore, is sometimes and to some extent a condition to be respected. Although I do not dispute that the alleviation of suffering is the main aim of palliative care, in pursuing that aim we should acknowledge a constraint of realism. (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)

When women become perpetrators of suicide bombing, their agency – their ability to act upon and affect the world – is often denied. There are a number of reasons for this and one this thesis considers is that – as females – they are not expected to be violent. Accordingly, such women are judged to be coerced or incompetent, and so unable to rule themselves sufficiently as agents. Models of autonomy propose various frameworks for assessing whether acts or persons are (...) self-governing, and the relational approach in particular has garnered much support recently. However, some aspects of the relational account remain under-theorised, including how autonomy might be measured. In this thesis, I aim to bring these two elements together by examining whether an extension of the relational model may offer a way in which to estimate the autonomy of the bombers in a more nuanced fashion. I make two claims. First, that the relational conception of the agent and autonomy ‘fits’ the bombers. Second, that my spectrum view, which is rooted in the relational approach, maps the bomber’s autonomy approximately but in detail. As such, my spectrum view is a befitting notion of autonomy and allows a graded and comparative representation of the bomber’s autonomy. (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)

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)

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)

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)

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)

Life with chronic disease and chronic care is hard and people who live in disadvantage may lack the freedom to prioritise their care because of increased c.

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)

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)

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)

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)

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)

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)

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 paper presents a reconceptualization of autonomy as the iterative realization of one’s capacity for “effective self-definition,” that is, possessing a sense of clarity and coherence in “who I am,” and exercising the decisional and volitional ownership over my life that this engenders. This process is “Relational,” wherein people’s interpersonal interactions have a deep and pervasive influence on their ability to recognize and exercise their autonomous capacities. This Relational understanding of autonomy is contextualized within the field of addiction rehabilitative practice. (...) Addiction is a pathology that progressively and insidiously undermines autonomy – producing a number of negative consequences that present themselves along a “continuum of pervasiveness.” In order to most fully foster rehabilitation, therapeutic alliances should to be attentive to facilitating autonomy’s dialogical antecedents. Here, interpersonal recognition can help clients to more fully recognize their own autonomous resources – enabling them to embark on their rehabilitative journey and achieve broader autonomous living. This paper concludes by proposing ways that practitioners can manifest their recognition of their clients’ autonomy within the therapeutic encounter. (shrink)

John Christman has recently objected to substantive conceptions of autonomy on the grounds that they introduce unwanted perfectionism into political thinking. I defend substantive conceptions of autonomy against Christman’s critique on two fronts. First, I defend substantive conceptions of autonomy against the charge that their utilisation in political theory would result in the inappropriate exclusion from democratic respect of individuals in oppressive relations. Second, I defend substantive conceptions of autonomy from the charge that they fail the ‘endorsement constraint’, i.e. that (...) incorporating a substantive conception of autonomy into the concept of the person at the heart of a political theory would be alienating for citizens. (shrink)