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)

According to the High Court in England and Wales, the primary purpose of legal interventions into the lives of vulnerable adults with mental capacity should be to allow the individuals concerned to regain their autonomy of decision making. However, recent cases of clinical decision making involving capacitous vulnerable adults have shown that, when it comes to medical law, medical ethics and clinical practice, vulnerability is typically conceived as opposed to autonomy. The first aim of this paper is to detail the (...) problems that arise when the courts and health care practitioners respond to the vulnerability of capacitous adults on the basis of such an opposition. It will be shown that not only does the common law approach to vulnerability fail to adequately capture the autonomy of capacitous vulnerable adults, the conception of vulnerability and autonomy in oppositional terms leads to objectionably paternalistic health care responses that undermine the autonomy of vulnerable patients as well as clinical and legal interventions that violate their autonomy. In response, the second aim of this paper is to show that the concepts of autonomy and vulnerability are necessarily entwined and, on that basis, the focus should be on promoting the autonomy of capacitous vulnerable adults where possible. In order to make this case, the paper explains the limitations of standard approaches to the autonomy of vulnerable adults and, in their place, offers a conception of legitimate, self-authorised autonomy that is fundamentally dependent on intersubjective practices of recognition. (shrink)

Many political philosophers argue that interference (or vulnerability to interference) threatens a person’s agency. And they cast political freedom in opposition to interpersonal threats to agency, as non-interference (or non-subjection). I argue that this approach relies on an inapt model of agency, crucial aspects of which emerge from our relationships with other people. Such relationships involve complex patterns of vulnerability and subjection, essential to our constitution as particular kinds of agents: as owners of property, as members of families, and as (...) participants in a market for labor. We should construct a conception of freedom that targets the structures of our interpersonal relations, and the kinds of agents these relations make us. Such a conception respects the interpersonal foundations of human agency. It also allows us to draw morally significant connections between diverse species of unfreedom—between, for instance, localized domination and structural oppression. (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)

Feminist socially constitutive conceptions of autonomy make the presence of idealized social conditions necessary for autonomy. I argue that such conceptions cannot, when applied under nonideal conditions, play two key feminist theoretical roles for autonomy: the roles of anti-oppressive character ideal and paternalism-limiting concept. Instead, they prescribe action that reinforces oppression. Treated as character ideals, socially constitutive conceptions of autonomy ask agents living under nonideal ones to engage in self-harm or self-subordination. Moreover, conceptions of autonomy that make idealized social conditions (...) a requirement of autonomy yield the conclusion that oppressed agents are appropriate objects of paternalism. (shrink)

Development ethicists see reducing intrahousehold gender inequality as an important policy aim. However, it is unclear that a minimalist cross-cultural consensus can be formed around this goal. Inequality on its own may not bring women beneath a minimal welfare threshold. Further, adherents of complementarian metaphysical doctrines may view attempts to reduce intrahousehold inequality as attacks on their worldviews. Complicating the justificatory task is the fact that familiar arguments against intrahousehold inequality, including those from agency and self-esteem, depart from premises that (...) complementarians reject—premises about the value of independence or the moral irrelevance of gender. I propose that development ethicists should offer complementarianism-compatible arguments against the norms and practices constitutive of intrahousehold inequality. I develop arguments against two intrahousehold inequality-supportive practices that depart from complementarian premises. Specifically, I argue that patriarchal risk and gender schemas that devalue women's labor prevent men from discharging complementarian duties to promote women's welfare. (shrink)

The unfortunately vast history of paternalism in both medicine and clinical research has resulted in perpetually increasing respect for patient autonomy and free choice in Western health care systems. Beginning with the negative right to informed consent, the principle of respect for autonomy has for many patients evolved into a positive right to request treatments and expect accommodation. This evolution of patient autonomy has mirrored a more general social attitude of market liberalism where increasing numbers of patients have come to (...) embody the role of the “consumer.” This paper explores this transformation and critiques the current way in which respect for patient autonomy is put into practice. Ultimately, this paper concludes that the consumer view of patient autonomy is dysfunctional. Moreover, this paper argues that, based on the inherent goals of medicine, some form of paternalism is required in any meaningfully therapeutic relationship. (shrink)

The author reviews various conceptions of autonomy to show that humans are actually not autonomous, strictly speaking. He argues for a need to rethink the personal autonomy approaches to HIV testing in sub-Saharan Africa (SSA) countries. HIV/AIDS has remained a leading cause of disease burden in SSA. It is important to bring this disease burden under control, especially given the availability of current effective antiretroviral regimens in low- and middle-income countries. In most SSA countries the ethic or value of personal (...) autonomy or self-determination is promoted as primary in HIV testing decision-making. SSA policymakers have an ontological and moral duty to adopt HIV testing policies that reflect human and medical realities, relationships, local contexts, and respect human rights for both individuals and others who are affected by HIV in society. Without rethinking the value of autonomy in HIV testing decision-making, the article cautions that attainment of the Sustainable Development Goal (SDG) 3 and the UNAIDS fast-track strategy that explicitly call to end the epidemic by 2030 will not be feasible for SSA. (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...

Genetic information is becoming increasingly used in modern life, extending beyond medicine to familial history, forensics and more. Following this expansion of use, the effect of genetic information on people’s identity and ultimately people’s quality of life is being explored in a host of different disciplines. While a multidisciplinary approach is commendable and necessary, there is the potential for the multidisciplinarity to produce conceptual misconnection. That is, while experts in one field may understand their use of a term like ‘gene’, (...) ‘identity’ or ‘information’ for experts in another field, the same term may link to a distinctly different concept. These conceptual misconnections not only increase inefficiency in complex organisational practices, but can also have important ethical, legal and social consequences. This paper comes at the problem of conceptual misconnection by clarifying different uses of the terms ‘gene’, ‘identity’ and ‘information’. I start by looking at three different conceptions of the gene; the Instrumental, the Nominal and the Postgenomic Molecular. Secondly, a taxonomy of four different concepts of identity is presented; Numeric, Character, Group and Essentialised, and their use is clarified. A general concept of Information is introduced, and finally three distinct kinds of information are described. I then introduce Concept Creep as an ethical problem that arises from conceptual misconnections. The primary goal of this paper is to reduce the potential for conceptual misconnection when discussing genetic identity and genetic information. This is complimented by three secondary goals—1) to clarify what a conceptual misconnection is, 2) to explain why clarity of use is particularly important to discussions of genes, identity and information and 3) to show how concept creep between different uses of genetic identity and genetic information can have important ethical outcomes. (shrink)

In Moral Case Deliberation, healthcare professionals discuss ethically difficult patient situations in their daily practice. There is a lack of knowledge regarding the content of MCD and there is a need to shed light on this ethical reflection in the midst of clinical practice. Thus, the aim of the study was to describe the content of healthcare professionals’ moral reasoning during MCD. The design was qualitative and descriptive, and data consisted of 22 audio-recorded inter-professional MCDs, analysed with content analysis. The (...) moral reasoning centred on how to strike the balance between personal convictions about what constitutes good care, and the perceived dissonant care preferences held by the patient. The healthcare professionals deliberated about good care in relation to demands considered to be unrealistic, justifications for influencing the patient, the incapacitated patient’s nebulous interests, and coping with the conflict between using coercion to achieve good while protecting human dignity. Furthermore, as a basis for the reasoning, the healthcare professionals reflected on how to establish a responsible relationship with the vulnerable person. This comprised acknowledging the patient as a susceptible human being, protecting dignity and integrity, defining their own moral responsibility, and having patience to give the patient and family time to come to terms with illness and declining health. The profound struggle to respect the patient’s autonomy in clinical practice can be understood through the concept of relational autonomy, to try to secure both patients’ influence and at the same time take responsibility for their needs as vulnerable humans. (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)

The direct protection of civilians from the violence and harms of armed conflict is most often understood in fixed, identity-centred terms: of what protection is, where it is located, of who provid...

BackgroundRespect for autonomy is a paramount principle in end-of-life ethics. Nevertheless, empirical studies show that decision-making, exclusively focused on the individual exercise of autonomy fails to align well with patients’ preferences at the end of life. The need for a more contextualized approach that meets real-life complexities experienced in end-of-life practices has been repeatedly advocated. In this regard, the notion of ‘relational autonomy’ may be a suitable alternative approach. Relational autonomy has even been advanced as a foundational notion of palliative (...) care, shared decision-making, and advance-care planning. However, relational autonomy in end-of-life care is far from being clearly conceptualized or practically operationalized.Main bodyHere, we develop a relational account of autonomy in end-of-life care, one based on a dialogue between lived reality and conceptual thinking. We first show that the complexities of autonomy as experienced by patients and caregivers in end-of-life practices are inadequately acknowledged. Second, we critically reflect on how engaging a notion of relational autonomy can be an adequate answer to addressing these complexities. Our proposal brings into dialogue different ethical perspectives and incorporates multidimensional, socially embedded, scalar, and temporal aspects of relational theories of autonomy. We start our reflection with a case in end-of-life care, which we use as an illustration throughout our analysis.ConclusionThis article develops a relational account of autonomy, which responds to major shortcomings uncovered in the mainstream interpretation of this principle and which can be applied to end-of-life care practices. (shrink)

This article discusses the educational significance of the moral demand for respect. In Ethics and Education, Richard Peters presents a conception of educational respect that was recently taken up by Krassimir Stojanov. This article responds to both Peters' and Stojanov's contributions and proposes another understanding of educational respect: to respect children is to treat them in a way that enables them to see themselves as persons endowed with dignity; that is, as having the equal standing to make claims on others.

Over the past decades, great strides have been made to professionalize and increase access to transgender medicine. As the evidence base grows and conceptualizations regarding gender dysphoria/gender incongruence evolve, so too do ideas regarding what constitutes good treatment and decision-making in transgender healthcare. Against this background, differing care models arose, including the ‘Standards of Care’ and the so-called ‘Informed Consent Model’. In these care models, ethical notions and principles such as ‘decision-making’ and ‘autonomy’ are often referred to, but left unsubstantiated. (...) This not only transpires into the consultation room where stakeholders are confronted with many different ethical challenges in decision-making, but also hampers a more explicit discussion of what good decision-making in transgender medicine should be comprised of. The aim of this paper is to make explicit the conceptual and normative assumptions regarding decision-making and client autonomy underpinning the ‘Standards of Care’ and ‘Informed Consent Model’ currently used in transgender care. Furthermore, we illustrate how this elucidation aids in better understanding stakeholders’ ethical challenges related to decision-making. Our ethical analysis lays bare how distinct normative ambiguities in both care models influence decision-making in practice and how foregrounding one normative model for decision-making is no moral panacea. We suggest that the first steps towards good decision-making in gender-affirming medical care are the acknowledgement of its inherent normative and moral dimensions and a shared, dialogical approach towards the decision-making process. (shrink)

Background Older patients in emergency care often have complex needs and may have limited ability to make their voices heard. Hence, there are ethical challenges for healthcare professionals in establishing a trustful relationship to determine the patient’s preferences and then decide and act based on these preferences. With this comes further challenges regarding how the patient’s autonomy can be protected and promoted. Aim To describe nurses’ experiences of dealing with older patients’ autonomy when cared for in emergency departments (EDs). Research (...) design This study adopted reflective lifeworld theory and a phenomenological design. Participants and research context A total of 13 open-ended interviews were performed with nurses working at two EDs in Sweden. Ethical considerations The study was reviewed by the Ethical Advisory Board in South East Sweden and conducted according to the Declaration of Helsinki. All participants gave consent. Findings Nurses’ experiences of dealing with older patients’ autonomy in EDs are characterized by moving in a conflicting uphill struggle, indicating obscure thoughts on how patient autonomy can be protected in an ethically challenging context. The phenomenon is further described with its meaning constituents: ‘Being hampered by prioritization under stress’, ‘Balancing paternalism and patient autonomy’, ‘Making decisions without consent in the patient’s best interests’ and ‘Being trapped by notions of legitimate care needs’. Conclusion Stressful work conditions and lacking organizational strategies in EDs contribute to nurses maintaining unjustified paternalistic care, regardless of the patient’s ability and medical condition, and questioning who has legitimacy for participating in decisions about care. The nurses’ protection and promotion of older patients’ autonomy is dependent on the opportunity, ability and willingness to create a patient relationship where the patient’s voice and preferences are valued as important. Consequently, strategies are needed to improve patient autonomy in EDs based on the idea of ‘relational autonomy’. (shrink)

Social robots are robots that can interact socially with humans. As social robots and the artificial intelligence that powers them becomes more advanced, they will likely take on more social and work roles. This has many important ethical implications. In this paper, we focus on one of the most central of these, the impacts that social robots can have on human autonomy. We argue that, due to their physical presence and social capacities, there is a strong potential for social robots (...) to enhance human autonomy as well as several ways they can inhibit and disrespect it. We argue that social robots could improve human autonomy by helping us to achieve more valuable ends, make more authentic choices, and improve our autonomy competencies. We also argue that social robots have the potential to harm human autonomy by instead leading us to achieve fewer valuable ends ourselves, make less authentic choices, decrease our autonomy competencies, make our autonomy more vulnerable, and disrespect our autonomy. Whether the impacts of social robots on human autonomy are positive or negative overall will depend on the design, regulation, and use we make of social robots in the future. (shrink)

A strong distinction is often made between personal autonomy and moral autonomy. Personal autonomy involves governing yourself in the pursuit of your own conception of the good. Moral autonomy involves legislating the moral law for yourself. Viewed in this way personal autonomy seems at best marginal and at worst a positive hindrance to moral autonomy, since personal autonomy can conflict with moral autonomy. Given that Kantian approaches to morality are closely aligned with moral autonomy, does that mean that the Kantian (...) must view personal autonomy as a moral hindrance? Can there be a legitimate role for personal autonomy within Kant’s ethical framework? This paper will seek to argue: that personal and moral autonomy need not be seen as in tension or at odds with one another; that Kant defends an attractive weak substantive theory of personal autonomy; that socialisation plays an important role (both positive and negative) in the development of autonomy competences in Kant’s theory; and that personal autonomy (properly understood) has an essential role to play in Kant’s ethical framework. (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)

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)

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)

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 paper is concerned with the practical importance of different forms of paternalism for educational theory and practice. Contrary to the traditional treatment of paternalism as a sometimes necessary and rather messy aspect of educational practices, I demonstrate that paternalism is to be regarded as an “indigenous concept” of educational theory and as the ‘indigenous model of justification’ that underlies the structure of educational practices. Based on an analysis of the intricate nexus between autonomy-oriented forms of paternalism and educational forms (...) of autonomy-based perfectionism I furthermore argue that a perfectionistically structured conception of autonomy provides a more adequate evaluative framework for justifying autonomy as an educational aim than alternative educational regimes of autonomy can deliver. Finally, I discuss some major theoretical problems of bridging the gap between general ethical principles and their application in practical fields. (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)

Rationale: In this article, I argue that we need a new perspective in the debate on autonomy in medicine, to understand many of the problems we face today – dilemmas that are situated at the intersection of autonomy and heteronomy, such as why well informed and autonomous people make unhealthy lifestyle choices. If people do not choose what they want, this is not simply caused by their lack of character or capability, but also by the fact that absolute autonomy is (...) impossible; autonomous individuals are ‘contaminated’ by heteronymous aspects, by influences from ‘outside’. Consequently, there are many good reasons to question the widely accepted hierarchical opposition of autonomy (progress) versus heteronomy (paternalism) in medicine. In an earlier article an analysis is made of the neologism ‘oughtonomy’ to support the thesis that when it comes down to human existence, autonomy and heteronomy are intertwined, rather than being merely opposites. Methods: In this article, I reflect upon how social conditions might improve our ‘choice architecture’, what Thaler & Sunstein have called ‘nudging’: how to change individual health choices without being paternalistic? I explore the extent to which both oughtonomy and nudging are able to challenge the question of autonomy in today’s medicine. Results and Conclusions: Autonomy may and should be a shared target in today’s medicine, but we should never forget that it is always intertwined with heteronomy. Starting from this perspective, progress in medicine demands far more than the increase of autonomy. (shrink)

For years now, autonomy has been discussed as one of the central values in health care. Understood as self-realization, it is opposed to paternalism which is conceived as an intolerable occurrence of heteronomy. Although different concepts have been developed to nuance this opposition, when it comes to health care discourse, heteronomy is still the enemy of autonomy. In our article, we defend the thesis that autonomy is only achievable as heteronomy. We are not arguing for an expansion of the meaning (...) of autonomy, but are attempting to conduct an analysis which lays bare the ‘disrupting’ attendance of heteronomy within the principle of autonomy. Autonomy does not begin where heteronomy ends, but can only begin if heteronomy is already involved. To emphasize this, we prefer to elaborate a new concept: ‘oughtonomy’. This concept is inspired by Jacques Derrida’s distinction between ‘difference’ and ‘differance’. We will develop the concept of oughtonomy from a deconstructive reading of Kant’s idea of autonomy, inspired by philosophers such as Jacob Rogozinski, Jean-Luc Nancy and others. In addition to a first exploration of this concept, this article also discusses the possible consequences of oughtonomy for current debates concerning health care. Our quest for a new understanding of autonomy is motivated by the concern that, although the accent on autonomy as self-realization and independence has many advantages, we should also bear in mind the countless disadvantages. (shrink)

In almost all opt-in systems of postmortal organ procurement, if the deceased has not made a decision about donation, his relatives will be asked to make it. Can this decision power be justified? I consider three possible justifications. (1) We could presume the deceased to have delegated this power to his relatives. (2) It could be argued that, if the deceased has not made a decision, a proxy decision has to be made in his best interests. (3) The relatives could (...) have a standing of their own because they are singled out from the parties whose interests are being affected by the decision by the special relation they had to the deceased. None of these arguments turns out to be convincing. (shrink)

Recommender Systems (RecSys) have been around since the early days of the Internet, helping users navigate the vast ocean of information and the increasingly available options that have been available for us ever since. The range of tasks for which one could use a RecSys is expanding as the technical capabilities grow, with the disruption of Machine Learning representing a tipping point in this domain, as in many others. However, the increase of the technical capabilities of AI-powered RecSys did not (...) come with a thorough consideration of their ethical implications and, despite being a well-established technical domain, the potential impacts of RecSys on their users are still under-assessed. This paper aims at filling this gap in regards to one of the main impacts of RecSys: personal autonomy. We first describe how technology can affect human values and a suitable methodology to identify these effects and mitigate potential harms: Value Sensitive Design (VSD). We use VSD to carry out a conceptual investigation of personal autonomy in the context of a generic RecSys and draw on a nuanced account of procedural autonomy to focus on two components: competence and authenticity. We provide the results of our inquiry as a value hierarchy and apply it to the design of a speculative RecSys as an example. (shrink)

Nursing professionals in a variety of practice settings routinely use implied consent. This form of consent is used in place of or in conjunction with informed or explicit consent. This article looks at one aspect of a qualitative exploratory study conducted in a Day of Surgery Admission unit. This article focuses on the examination of nurses’ understandings of implied consent and its use in patient care in nursing practice. Data were collected through one-on-one interviews and analysed using a thematic analysis. (...) Nurses participating in this study revealed that they routinely used implied consent in their nursing practice. This article will look at whether implied consent supports or impedes a patient’s autonomy. (shrink)

In this paper I look at various ways that interpersonal and social relations can be seen as required for autonomy. I then consider cases where those dynamics might play out or not in potentially paternalistic situations. In particular, I consider cases of especially vulnerable persons who are attempting to reconstruct a sense of practical identity required for their autonomy and need the potential paternalist’s aid in doing so. I then draw out the implications for standard liberal principles of paternalism, specifically (...) in clinical or therapeutic situations. The picture of potential paternalism that emerges here is much more of a dynamic, interpersonal scenario rather than a case of two separate individuals making decisions independent of each other. (shrink)

The COVID-19 pandemic has highlighted the difficult task of balancing access to misinformation with respect for patient decision-making. Due to its innate antagonism, the paradigm of “physician paternalism” versus “patient autonomy” may not adequately capture the clinical relationship. The authors hypothesized that most patients would, in fact, prefer significant physician input as opposed to unopinionated information when making medical decisions. There is a lack of empirical data corroborating this in the United States. To that end, a survey was distributed to (...) 650 individuals through Amazon Mechanical Turk, of which 499 responses met pre-determined quality criteria. Most respondents believed their doctor's insight would be better than their own if injured or gravely ill. When asked to affirm preferences separately, a significantly higher proportion of respondents preferred guidance from their doctor when making medical decisions compared to being presented with unopinionated information ( p < 0.001). Encouragingly, 93.1% believed that the doctor's primary goal was their health. When asked directly to compare physician guidance to unopinionated information, 69.1% respondents stated they would prefer physician guidance. We found a consistent association between educational/economic background and affirmative responses ( p < 0.001), suggesting particular attention should be paid to patients that are disadvantaged with respect to these demographic factors. The belief in a shared goal, and a consistent preference for physician input, suggests that patients endorse a more collaborative view of the clinical dynamic than is suggested by the paternalism-autonomy paradigm. This pilot study suggests physicians should not be afraid to communicate conviction with regard to treatment decisions. (shrink)

This article presents the first thematic review of the literature on the ethical issues concerning digital well-being. The term ‘digital well-being’ is used to refer to the impact of digital technologies on what it means to live a life that is good for a human being. The review explores the existing literature on the ethics of digital well-being, with the goal of mapping the current debate and identifying open questions for future research. The review identifies major issues related to several (...) key social domains: healthcare, education, governance and social development, and media and entertainment. It also highlights three broader themes: positive computing, personalised human–computer interaction, and autonomy and self-determination. The review argues that three themes will be central to ongoing discussions and research by showing how they can be used to identify open questions related to the ethics of digital well-being. (shrink)

This article presents the first thematic review of the literature on the ethical issues concerning digital well-being. The term ‘digital well-being’ is used to refer to the impact of digital technologies on what it means to live a life that isgood fora human being. The review explores the existing literature on the ethics of digital well-being, with the goal of mapping the current debate and identifying open questions for future research. The review identifies major issues related to several key social (...) domains: healthcare, education, governance and social development, and media and entertainment. It also highlights three broader themes: positive computing, personalised human–computer interaction, and autonomy and self-determination. The review argues that three themes will be central to ongoing discussions and research by showing how they can be used to identify open questions related to the ethics of digital well-being. (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)

Monitoring and assistive technologies (MATs) are being used more frequently in healthcare. A central ethical concern is the compatibility of these systems with the moral preferences of their users—an issue especially relevant to participatory approaches within the ethics-by-design debate. However, users’ incapacity to communicate preferences or to participate in design processes, e.g., due to dementia, presents a hurdle for participatory ethics-by-design approaches. In this paper, we explore the question of how the value preferences of users in the field of dementia (...) care can be integrated into AI-based MATs. First, we briefly introduce different ethics-by-design approaches and explain the challenges they face in dementia care. Next, we introduce a novel approach for addressing these challenges. Through a qualitative content analysis of interviews with persons with dementia and their family caregivers (n = 27), we identified multiple ideal–typical value preference profiles. We then applied these profiles in a computer simulation, by which we also introduce the concept of ethical compliance quantification to scale the moral preferences of the interviewees for the simulation. Finally, we discuss study results, the advantages of using computer simulations, and general study limitations before drawing conclusions for further research. The study contributes to the ongoing debate on participatory ethics-by-design by defining on the basis of empirical data ideal–typical value preference frameworks that can be used to guide MAT actions and their outcomes. Going forward, MAT end-users with dementia and other communication-impaired persons could be enabled to choose a value profile that best fits their moral preferences. (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)

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)

Drawing on sociological and anthropological studies, the aim of this article is to reconstruct how obstetric technologies contribute to a moral conception of pregnancy and motherhood, and to evaluate that conception from a normative point of view. Obstetrics and midwifery, so the assumption, are value-laden, value-producing and value-reproducing practices, values that shape the social perception of what it means to be a “good” pregnant woman and to be a “good” mother. Activities in the medical field of reproduction contribute to “kinning”, (...) that is the making of particular social relationships marked by closeness and special moral obligations. Three technologies, which belong to standard procedures in prenatal care in postmodern societies, are presently investigated: informed consent in prenatal care, obstetric sonogram, and birth plan. Their widespread application issupposed to serve the moral goal of effecting patient autonomy. A reconstruction of the actual moral implications of these technologies, however, reveals that this goal is missed in multiple ways. Informed consent situations are marked by involuntariness and blindness to social dimensions of decision-making; obstetric sonograms construct moral subjectivity and agency in a way that attribute inconsistent and unreasonable moral responsibilities to the pregnant woman; and birth plans obscure the need for a healthcare environment that reflects a shared-decision-making model, rather than a rational-choice-framework. (shrink)

Kazuo Ishiguro’s book Never Let Me Go is a thoughtful and provocative exploration of what it means to be human. Drawing on insights from the hermeneutic-phenomenology of Martin Heidegger, I argue that the movement of Ishiguro’s story can be understood in terms of actualising the human potential for autonomous action. Liberal theories take autonomy to be concerned with analytically and ethically isolatable social units directing their lives in accordance with self-interested preferences, arrived at by means of rational calculation. However, I (...) argue that such theories are simplistic abstractions from our human-life world, distorting the fundamental embodied, embedded, and relational nature of autonomy. When we attend closely to our concrete, lived existence we see instead that autonomy is about responding appropriately to others with whom we share a world. As we follow the path of Ishiguro’s central character Kathy H., we are shown how an awareness and acceptance of our existential finitude as precarious and fallible creatures is necessary for guiding such appropriate interactions. As Kathy grows and is affirmed into her life-world, which grounds and supports her Being, she moves from heteronomy to autonomy; from being moved by external laws to embodying those laws, thereby becoming autonomous. This is exemplified by her appropriation of the carer role, through which she responds in a fitting way to those with whom she shares her world, bearing the weight of and dwelling responsibly within our human condition. (shrink)

This article examines the case of Insite, North America’s only supervised injection facility, to consider the relationship between dependence, relational autonomy, and vulnerability. At state-funded Insite, users inject illicit drugs under medical supervision. By conceiving of Insite as a health-care facility and addiction as disease, advocates evoke a shared sense of vulnerability among the nonusing public and users, garnering considerable support for the site. Through Insite, the state responds to vulnerability by reshaping the meaning of dependence and conferring recognition upon (...) users, in turn fostering users’ autonomy. However, the medicalized discourse surrounding Insite may obscure drug users’ vulnerabilities emerging not from “disease,” but from stigma and criminalization. Vulnerability analysis must emphasize not merely a naturalized conception of vulnerability, but the socially constructed nature of human beings’ experiences of vulnerability. (shrink)

The use of tanning beds has been identified as being among the most significant causes of melanoma and non-melanoma skin cancer. Accordingly, the activity is properly seen as one that involves profound harm to self. The article examines paternalistic reasons for restricting sunbed usage. We argue that both so-called soft and hard paternalistic arguments support prohibiting the use of sunbeds. We make the following three arguments: an argument from oppressive patterns of socialization suggesting that the autonomous nature of the conduct (...) in question is questionable; an argument from so-called evaluative delusions in which individuals attach incorrect weights to some of their values; a strictly hard paternalistic argument appealing to the harm in itself pertaining to the use of sunbeds. (shrink)

The intersection between virtue and care ethics is underexplored in contemporary moral philosophy. This thesis approaches care ethics from a neo-Aristotelian virtue ethical perspective, comparing the two frameworks and drawing on recent work on care to develop a theory thereof. It is split into seven substantive chapters serving three major argumentative purposes, namely the establishment of significant intertheoretical agreement, the compilation and analysis of extant and new distinctions between the two theories, and the synthesis of care ethical insights with neo-Aristotelianism (...) to generate a virtue ethical theory of care. In the first two chapters, I outline virtue ethics and care ethics, and argue for considerable agreement over central premises. Chapter 2 summarises the foundational commitments of care ethics, focusing particularly on their relational ontology and its links to the other ethical claims care ethicists universally ascribe to, namely particularism, partialism, the moral salience of emotions, and the rejection of hard public/private distinctions. Chapter 3 lays out the central concepts in neo-Aristotelian virtue ethics, including eudaimonism, virtue, and character traits, and drawing a number of comparisons between virtue and care ethics specifically with regard to relational ontology and the meta-ethical commitments it underpins. In addition to doing the necessary expository work for the remainder of the thesis, Chapters 2 and 3 also argue that care ethics and virtue ethics have much more in common than is typically acknowledged – the first major contribution of this thesis to the literature. Chapters 2 and 3 to provide at least a prima facie justification for pursuit of the questions I confront in the remainder of the thesis. In Chapter 4, I ask what differentiates these two ethical theories. I survey some of the differences which philosophers in either camp have identified and offer some of my own. I suggest that several of those differences either rest on misunderstandings of one ethic or the other, or that in erecting a divide between virtue and care ethics they also disunify ethics of care. I do, however, identify two differences which seem defensible. Specifically, they are that virtue ethics seems to lack an account of care, which I define minimally as a response or responsiveness to need, and that virtue and care ethics organise their meta-ethical and normative concepts differently. This chapter thus presents a second contribution to the literature: a study of the differences between virtue ethics and care ethics. It also serves to set the trajectory for the remaining chapters, where I respond to the claim that virtue ethics lack an account of care. I spend the remainder of the thesis constructing what I take to be a satisfying foundation for a virtue ethical theory of care. In Chapter 5, I offer three initially viable means of incorporating care into virtue ethics, all of which treat care as a virtue. These are the analogical approach, according to which care is analogous to an existing virtue; the additive approach, according to which care is a novel virtue; and the bundling approach, according to which care is a bundle of virtues. I also offer and evaluate reasons to reject the claim that care is a virtue, concluding that the claim is indeed a viable one so long as the concept of care is sufficiently thick, and I contend that analogical approaches, and particularly analogies with charity, outperform the others. Chapter 5 therefore serves two ends. First, it proffers a novel meta-analysis of concepts of care as a virtue, and thus makes a third contribution to the literature. In doing so, it makes an inroad into the second: the development of a neo-Aristotelian theory of care. Chapter 6 continues this project. I attempt to show how care can be construed as an act-type and a practice. I argue in this chapter that practices are a subcategory of actions, and that care qualifies as an Anscombean act-type which aims at the meeting of needs relating to the care-recipient’s flourishing. I go on to consider the implications of this account for ethics which deploy care as a moral concept, maintaining that it not only offers a better account of consequences than theories of care which include success criteria, but also that it affords us interesting insights into the distinction between ‘caring about’ and ‘caring for’ which allow us to make sense of certain tenets of neo-Aristotelianism. This represents a contribution to both discourses, since neither care nor virtue ethicists working at the intersection of their respective normative theories have delved very deeply into the philosophy of action. Chapter 7 discusses caring relations, suggesting that a virtue ethical theory of caring relations can lean on the work care ethicists have done, and adding some necessary refinements, such as a distinction between ideal and non-ideal caring relations, and a theory of caring relations as reasons for action. This final chapter also draws these three concepts of care together by arguing that virtuous caregivers who are invested in the flourishing of those for whom they care are also sensitive to the relations those care-recipients bear to their institutional environment. I argue that because they are caring participants in caring relations, virtuous agents are characteristically motivated by states of need and dependency to engage in certain sorts of conventionally political practices. In other words, the virtue or virtues of caring characteristically manifest in certain sorts of political or social practices, relating specifically to those areas of moral life. This allows us to build upon recent work in feminist virtue ethics of the sort offered by Tessman and Friedman. I also offer a novel analysis of migration, suggesting that the account of care presenting here is analytically useful both when it comes to historical cases of migration such as the underground railroads and escapes from Nazi-occupied Europe, but also for contemporary issues such as the migrations occurring in the Southern United States and in much of Europe. I thus conclude not only that virtue ethicists ought to incorporate care into their normative framework, and that the theory of care presented here is a coherent one, but that this leads us naturally into applied topics such as virtue politics. I conclude the thesis by considering some its implications and by identifying some further avenues for research. (shrink)

Goffman’s (1959) dramaturgical identity theory requires modification when theorising about presentations of self on social media. This chapter contributes to these efforts, refining a conception of digital identities by differentiating them from ‘corporatised identities’. Armed with this new distinction, I ultimately argue that social media platforms’ production of corporatised identities undermines their users’ autonomy and digital well-being. This follows from the disentanglement of several commonly conflated concepts. Firstly, I distinguish two kinds of presentation of self that I collectively refer to (...) as ‘expressions of digital identity’. These digital performances (boyd 2007) and digital artefacts (Hogan 2010) are distinct, but often confused. Secondly, I contend this confusion results in the subsequent conflation of corporatised identities – poor approximations of actual digital identities, inferred and extrapolated by algorithms from individuals’ expressions of digital identity – with digital identities proper. Finally, and to demonstrate the normative implications of these clarifications, I utilise MacKenzie’s (2014, 2019) interpretation of relational autonomy to propose that designing social media sites around the production of corporatised identities, at the expense of encouraging genuine performances of digital identities, has undermined multiple dimensions of this vital liberal value. In particular, the pluralistic range of authentic preferences that should structure flourishing human lives are being flattened and replaced by commercial, consumerist preferences. For these reasons, amongst others, I contend that digital identities should once again come to drive individuals’ actions on social media sites. Only upon doing so can individuals’ autonomy, and control over their digital identities, be rendered compatible with social media. (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)

Personal Information Management Systems (PIMS) aim to facilitate the sharing of personal information and protect privacy. Efforts to enhance privacy management, aligned with established privacy policies, have led to guidelines for integrating transparent notices and meaningful choices within these systems. Although discussions have revolved around the design of privacy-friendly systems that comply with legal requirements, there has been relatively limited philosophical discourse on incorporating the value of privacy into these systems. Exploring the connection between privacy and personal autonomy illuminates the (...) instrumental value of privacy and highlights the importance of intentionally embedding the value of privacy into these systems. To translate the value of privacy into concrete design requirements, this study constructs a values hierarchy consisting of values, norms, and design requirements. After analyzing the relationships between privacy and autonomy and identifying norms, the design requirements translated from the norms associated with the components of personal autonomy are specified at the lowest layer. These requirements include a design to prevent unauthorized access and dark patterns and to provide effective and efficient notices and choices. The findings contribute to expanding the requirements for designing the aspect of privacy as a legal requirement to incorporate the value of privacy into systems. (shrink)