In the biomedical and behavioral sciences, it is widely recognized that researchers conducting studies involving human participants must respect the autonomy of research subjects. There is significant debate in the clinical research ethics and bioethics literatures about what it means for an individual to be autonomous. According to proponents of the Liberal Conception of Autonomy, an autonomous person is an agent who has interests and opinions and the capacity to deliberate about them. In contrast, proponents of the Relational Conception of (...) Autonomy argue that because humans are social creatures, autonomy is a relational concept and ought to be recognized as such by medical professionals. In this article, I argue that the LCA/RCA debate is flawed, and that the notion of freedom as non-domination, rather than autonomy, ought to be adopted for biomedical research ethics policies regarding informed consent and research agenda-setting. I then argue that this view of freedom should also be adopted... (shrink)

Though abortion is legal in Canada, policies currently in place at various levels of the health care system, and the individual actions of medical professionals, can inhibit access to abortion. This paper examines the various extra-legal barriers to abortion access that exist in Canada, and argues that these barriers are unjust because there are no good reasons for the restrictions on autonomy that they present. The paper then outlines the various policy measures that could be taken to improve access.

This paper examines eight publicly available critical care triage protocols intended for use during an influenza pandemic. These protocols place an emphasis on objective measures of survivability as the primary criterion for assigning priority for lifesaving critical care during a pandemic. Triage would then be undertaken without consideration of the relational or social characteristics of patients who need critical care. We argue that enacting these protocols could result in the denial of lifesaving care to oppressed and disadvantaged groups. The lens (...) of relational theory reveals this ethical flaw in the triage protocols we examine, and suggests ways of improving these protocols. (shrink)

There is understandable concern about policies or practices that impose one person's will on another. These seem to disrespect autonomy. But such concerns suppose that there is something there to r...

Questions about the normative significance of ‘transparency’ do not receive much attention, even though they were central to Richard Moran’s (2001) original account. Instead, transparency is typically studied because of its epistemic and psychological peculiarities. In this paper, I consider three normative conceptions of transparency: teleological rationalism, procedural rationalism, and relational rationalism. The first is a theory about how transparency might relate to flourishing as a rational agent; the latter two are theories about how transparency relates to non-alienated self-knowledge. All (...) three conceptions, I argue, face serious problems. I end the paper by suggesting where the rationalist might go from here and by highlighting the importance of focusing not on the methods but on the broader circumstances in which self-knowledge is gained or lost. (shrink)

This paper will highlight how the existing approaches to the Strawman Fallacy and the Principle of Charity are unable to fully accommodate the problems of interpreting children’s arguments. A lack of charity is as problematic as an excess of charity when arguing with children, and can contribute to misinterpretation of arguments. An application of moderate charity avoids the pitfalls of misrepresenting children. However, interpreting children’s arguments with the appropriate amount of charity is a challenging task. The argumentative context is relevant (...) in determining the interpretive approach and the extent of charity that can be justified. The context of arguing with children necessitates an Ethics of Care-based approach to interpretation. Michael Gilbert’s concept of coalescent argumentation exemplifies how Ethics of Care can be realized during argumentative exchanges involving children. (shrink)

ABSTRACT In this article we use theory and empirical evidence to synthesize a model for the analysis of autonomy in people with addictions. We review research on motivation and denial as accepted addiction constructs that need to be replaced with non-stigmatizing and autonomy-supportive language when seeking to ?treat? addicts. We present three main factors involved in relational autonomy in addiction (mentalizing, positive self-concept, and stigma), and illustrate our model by examining variations on these parameters in two case studies of heroin (...) addicts. We conclude that a growth perspective is needed to assess functioning in populations believed to be ?addicted? and make suggestions for assessment. (shrink)

The further development of public health ethics will be assisted by a more direct engagement with political theory. In this way, the moral vocabulary of the liberal tradition should be supplemented—but not supplanted—by different conceptual and normative resources available from other traditions of political and social thought. This article discusses four lines of further development that the normative conceptual discourse of public health ethics might take. The relational turn. The implications for public health ethics of the new ‘ecological’ or ‘relational’ (...) interpretation that is emerging for concepts such as agency, self-identity, autonomy, liberty and justice. Governing the health commons. The framework of collective action problems is giving way to notions of democratic governance and management of common resources. The concept of membership. Membership is specified by the notions of equal respect and parity of voice and agency. The concept of mutuality. Mutuality is specified by the notions of interdependent concern and care. (shrink)

Public health involves the use of power to change institutions and redistribute resources and deliberately to shape individual thought and behavior. This requires normative legitimation and demands ethical critique. This article explores concepts that are vital to public health ethics, but have been relatively neglected. These are membership, solidarity and the concept of place. The article argues that the practice of public health should recognize the equal rights of membership in communities of health justice. Public health should also rely on (...) a sense of obligation and mutual aid in a world of shared vulnerability and reciprocal recognition. Finally, public health achieves its goals not merely—and perhaps not most fundamentally—through information and altering the logical ratiocination of individuals or groups, but rather through the reformation of sense and sensibility. (shrink)

Deliberative democracy’s approach with its emphasis on a multidimensional conception of freedom is very well suited to offer a sophisticated and critical account of freedom of speech in the democratic public sphere. Nevertheless, it has rarely engaged other competing free speech theories in order to offer a valuable social critique of other ways of thinking about freedom of expression. This article tries to fill this gap by critically engaging Robert Post’s theory of freedom of speech based on democratic self-government. On (...) Post’s account, the key to effective democratic self-government is political autonomy, which he reduces to negative liberty and formal equality. I argue that this reduction creates serious problems. A purely procedural account of democracy makes it difficult to politicize new issues in the public sphere and also makes a dominant discourse resistant to contestation. Further, given his theory, Post does not have enough normative resources to offer an account of public justification, which would expand effective political liberty. (shrink)

What is the moral value of formal democratic decision-making? Egalitarian accounts of democracy provide a powerful answer to this question. They present formal democratic procedures as a way for a society of equals to arrive at collective decisions in a transparent and mutually acceptable manner. More specifically, such procedures ensure and publicly affirm that all members of a political community, in their capacity as autonomous actors, are treated as equals who are able and have a right to participate in collective (...) decision-making. Recently, a number of authors have raised what I describe as the ‘no impact’ objection. This objection focuses on the egalitarian emphasis on autonomy to cast doubt on the moral value of formal democratic procedures. It holds that individual participation in formal democratic decision-making has no impact on the eventual result, and therefore cannot be understood as an exercise in autonomy. Consequently, the ‘no impact’ objection claims that the moral value of formal democracy cannot be explained with reference to an egalitarian ideal of ‘rule by the people’. In this article, I refute this objection by complementing an egalitarian account of democracy with an account of basic autonomy. (shrink)

Around the world the wealthy can get their lives extended while the poorget little basic medical help. Over the same years that the field ofbioethics has prospered and expanded, this disparity has increased.Reasons for the failure of bioethics to successfully address thishealth/wealth issue include its identification with the cognitiveand social authority of medicine; its gatekeeping behavior;its funding sources; its questionable use of ``principlism'' andits emphasis on crises and dilemmas to the neglect of ``housekeeping''issues. The work of most women in bioethics (...) rarely addresses thehealth/wealth issue; if it does, their work may be ignored, aswere the recommendations of Canadian feminists working under governmentgrants. To achieve equity in health care, the structure of both medicineand bioethics needs to be changed. Yet, since bioethicists generallyhave accepted the status quo, this seems unlikely to happen. (shrink)

In this paper, I outline the cumulative network model of the self. This model articulates the self as relational, recognizing social relations as constitutive of the self. The theory arises out of concerns about the individualistic paradigms of two main frameworks in the analytic philosophical literature on personal identity, namely, the psychological and the animalist approaches to personhood and is explicitly inspired by feminist theories on relational autonomy and self. I argue that “relationality” is not only social, but that the (...) self is relational throughout, psychologically, physically, biologically, culturally, semantically, as well as socially. Hence, the self is a network of relations. The model also aims to recognize that temporality or historicity is constitutive of the self, that the self is a process, not a static three-dimensional thing. Hence, the self is a cumulative network. (shrink)

A ‘Ulysses arrangement’ (UA) is an agreement where a patient may arrange for psychiatric treatment or non-treatment to occur at a later stage when she expects to change her mind. In this article, I focus on ‘competence-insensitive’ UAs, which raise the question of the permissibility of overriding the patient’s subsequent decisionally competent change of mind on the authority of the patient’s own prior agreement. In “The Ethical Justification for Ulysses Arrangements”, I consider sceptical and supportive arguments concerning competence-insensitive UAs, and (...) argue that there are compelling reasons to give such UAs serious consideration. In “Decisional Competence and Legal Capacity in UAs”, I examine the nature of decisional competence and legal capacity as they arise in UAs, an issue neglected by previous research. Using the distinctions which emerge, I then identify the legal structure of a competence-insensitive UA in terms of the types of legal capacity it embodies and go on to explain how types of legal capacity might be shared between the patient and a trusted other to offer support to the patient in the creation and implementation of a competence-insensitive UA. This is significant because it suggests possibilities for building patient support mechanisms into models of legal UAs, which has not addressed in the literature to date. Drawing on this, in “Using Insights from the Competence/Capacity Distinction to Enhance Patient Support in UAs”, I offer two possible models to operationalize competence-insensitive UAs in law that allow for varying degrees of patient support through the involvement of a trusted other. Finally, I outline some potential obstacles implementing these models would face and highlight areas for further research. (shrink)

Informed consent is medico-legal orthodoxy and the principal means by which research encounters with the body are regulated in the UK. However, biomedical advancements increasingly frustrate the degree to which informed consent can be practiced, whilst introducing ambiguity into its legal significance. What is more, feminist theory fundamentally disrupts the ideologically liberal foundations of informed consent, exposing it as a potentially inadequate mode of bioethical regulation. This paper explores these critiques by reference to a case study—embryo donation to health research, (...) following fertility treatment, as regulated by the HFEA 1990—and contends that informed consent cannot adequately respond to the material realities of this research encounter. Thereafter, by drawing on feminist theories of vulnerability, this paper proffers an alternative bioethical approach, which calls for structural reform in recognition of the fundamentally bilateral constitution of self and society and a renewed appreciation for the affective/dispositional tenor of lived experience. (shrink)

ZusammenfassungDie Bestimmung der Einwilligungsfähigkeit von Patienten beinhaltet weitreichende ethische und rechtliche Implikationen. Ausreichende Klärung des Begriffs ist daher unerlässlich. Solche Bemühungen gelten vorwiegend der Definition von Kriterien hinsichtlich relevanter mentaler Fähigkeiten. Grundlegendere Aspekte werden kaum explizit besprochen, so die Frage, ob Einwilligungsfähigkeit eher eine inhärente Fähigkeit oder ein ethisches Urteil bezeichnet. Zentral bei dieser Unterscheidung ist der Stellenwert ethischer Überlegungen die Zulässigkeit fürsorglicher Bevormundung betreffend. Geht man von einer inhärenten Fähigkeit aus, schließen solche Überlegungen an die Beurteilung von Einwilligungsfähigkeit an. (...) Im Fall eines Urteils sind diese konstitutiv für das Verständnis und die Bestimmung von Einwilligungsfähigkeit. Obwohl Einwilligungsfähigkeit idealerweise als inhärente Fähigkeit gedacht wird, weist die tatsächliche Herangehensweise eher in die Richtung, sie als ethisches Urteil zu verstehen. Diese verschiedenen Tendenzen sind für konzeptuelle Kontroversen hinsichtlich des Stellenwerts risiko-relativer Beurteilungen verantwortlich. Des Weiteren muss sich die Bestimmung von Einwilligungsfähigkeit – konzipiert man sie als ethisches Urteil – nicht rigide an einer bestimmten Definition des Begriffs der Autonomiefähigkeit orientieren und vermag so mit dessen definitorischen Unklarheiten besser umzugehen. (shrink)

ZusammenfassungDie Uterustransplantation ermöglicht Frauen mit einer absoluten uterinen Infertilität eine Schwangerschaft mit biologisch eigenem Kind. Das neuartige experimentelle Verfahren wirft eine Reihe von ethischen Fragen auf. Ziel dieses Artikels ist es, relevante ethische Problemkonstellationen im Kontext der Uterustransplantation überblickshaft darzulegen und kritisch zu diskutieren. Als systematischer Rahmen der Darstellung dienen die vier Prinzipien der Medizinethik Autonomie, Nicht-Schaden, Wohltun und Gerechtigkeit nach Beauchamp und Childress. Nach eingehender ethischer Betrachtung plädieren die Autorinnen mit Blick auf die Akkumulation schwerwiegender ethischer Probleme für die (...) Notwendigkeit einer grundlegenden und umfassenden ethischen Debatte über Uterustransplantation. Ausgangspunkt einer solchen Debatte muss eine kritische Reflexion des normativen Stellenwerts des Leidens an einem unerfüllten Kinderwunsch sein. (shrink)

A number of reports have suggested that patients who undergo deep brain stimulation may experience changes to their personality or sense of self. These reports have attracted great philosophical interest. This paper surveys the philosophical literature on personal identity and DBS and draws on an emerging empirical literature on the experiences of patients who have undergone this therapy to argue that the existing philosophical discussion of DBS and personal identity frames the problem too narrowly. Much of the discussion by neuroethicists (...) centers on the nature of the threat posed by DBS, asking whether it is best understood as a threat to personal identity, autonomy, agency, or authenticity, or as putting patients at risk of self-estrangement. Our aim in this paper is to use the empirical literature on patients’ experiences post-DBS to open up a broader range of questions - both philosophical and practical, and to suggest that attention to these questions will help to provide better support to patients, both before and after treatment. (shrink)

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)

. Morality is often dismissed as irrelevant in what is seen as the global anarchy of rival states each pursuing its national interest. When morality is invoked, it is usually the morality of justice with its associated moral conceptions of individual rights, equality, and universal law. In the area of moral theory, an alternative moral approach, the ethics of care, has been developed in recent years. It is beginning to influence how some see their global responsibilities.

: Many activities formerly not in the market are being "marketized," and women's labor is increasingly in the market. I consider the grounds on which to decide what should and what should not be "in" the market. I distinguish work that is paid from work done under "market norms," and argue that market values should not have priority in education, childcare, healthcare, and many other activities. I suggest that a feminist ethics of care is more promising than Kantian ethics or (...) utilitarianism for recommending social decisions concerning limits on markets. (shrink)

Many activities formerly not in the market are being “marketized,” and women's labor is increasingly in the market. I consider the grounds on which to decide what should and what should not be “in” the market. I distinguish work that is paid from work done under “market norms,” and argue that market values should not have priority in education, childcare, healthcare, and many other activities. I suggest that a feminist ethics of care is more promising than Kantian ethics or utilitarianism (...) for recommending social decisions concerning limits on markets. (shrink)

This article explores the psychological intricacies of the Theravādin interpretation of the “conceit of inferiority” (omāna), which is considered to be one of the standard types of pride or conceit (māna). Considering oneself inferior involves an inflated and contrived construction of oneself, akin to other varieties of conceit. Yet (omāna) is a curious form of pride, involving as it does much selfabasement, and even loathing and despising of oneself. Drawing primarily on Abhidhamma canonical and commentarial texts, the article investigates how (...) this conceit illuminates subtle forms of self-affirmation, the affective aspects of selfassessment, and the socially determined dimensions of self-knowledge. The article also offers some comparative considerations with ideals of humility in western traditions. (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 his article, Bester (2018) criticizes the so-called “harm consensus” movement among a growing number of bioethicists and practitioners. He argues that the harm principle is unable to replace the...

RÉSUMÉ: Dans cet article, je m’intéresse à l’éthique de l’agentivité sexuelle courante. Il s’agit, plus particulièrement, des questions morales concernant quand, comment et pourquoi nous nous identifions à un type donné d’agent sexuel. Comme l’auto-identification met en jeux une combinaison complexe de processus individuels et sociaux, un cadre conceptuel qui rend justice à ces processus permettrait une analyse de l’éthique de l’auto-identification sexuelle. Je présente le concept de l’authenticité sexuelle comme étant utile dans les contextes où elle comporte deux aspects (...) principaux : l’adoption d’une identité sexuelle qui nous est propre et l’explication que nous en donnons à et avec d’autres personnes. (shrink)

An extension of Alasdair MacIntyre's concept of 'virtues of acknowledged dependence', to include relationships with the non-human world, offers an organising principle for environmental virtue ethics. It situates ecological virtue among more traditional virtues of inter-human relationships, and may thereby contribute to an ethical reconciliation of policies aimed at encouraging ecological virtue with those aimed at protecting the freedoms required for personal autonomy. Within this eudaimonist framework, ecological virtue may be understood and promoted as directly contributing to a good life.

In the traditions of narrative ethics and casuistry, stories have a well-established role. Specifically, illness narratives provide insight into patients’ perspectives and histories. However, because they tend to see fiction as an aesthetic endeavour, practitioners in these traditions often do not realize that fictional stories are valuable moral sources of their own. In this paper I employ two arguments to show the mutual relationship between bioethics and fiction, specifically, science fiction. First, both discourses use imagination to set a scene and (...) determine a perspective. Second, bioethics and science fiction share the family resemblance of expressing moral beliefs. I then consider how understanding bioethics and science fiction as interrelated discourses can be the basis of a methodology for inquiry into relational autonomy in the context of biotechnologies and medicine. As an example of this methodology, I analyse Fay Weldon’s novel The Cloning of Joanna May (1989). (shrink)

Although informed consent is an integral part of clinical practice, its current doctrine remains mostly a matter of law and mainstream ethics rather than empirical research. There are scarce empirical data on patients’ perceived purpose of informed consent, which may include administrative routine/courtesy gesture, simple honest permission, informed permission, patient-clinician shared decision-making, and enabling patient’s self decision-making. Different purposes require different processes.

In times of current crisis, the voices of women are needed more than ever. The accumulation of war and environmental catastrophes teaches us that exploitation of people and nature through violent appropriation and enrichment for the sake of short-term self-interest exacts its price. This book presents contributions on the currently most relevant and most urgent issues: reshaping the economy, environmental problems, technology and the re-reading of history from the non-western and western tradition. With an outlook into the problems of class, (...) race and gender in its intersectional framing, the collection offers a unique overview of current research in these fields and contributes to the renewal and contemporary presentation of feminist thought from partly concrete perspectives with regard to factual issues. (shrink)

Psychiatric patients may try (or express a desire) to injure themselves in hospital in order to cope with overwhelming emotional pain. Some health care practitioners and patients propose allowing a controlled amount of self-injury to occur in inpatient facilities, so as to prevent escalation of distress. Is this approach an example of professional assistance with harm? Or, is the approach more likely to minimise harm, by ensuring safer self-injury? In this article, I argue that health care practitioners who use harm-minimisation (...) can be considered to be helping physical injury to occur, although they do not encourage the act. I consider why there are compelling reasons to believe that a patient who self-injures is not maximally autonomous in relation to that choice. However, I then move onto argue that allowing a degree of self-injury may enable engagement with psychotherapy (enhancing autonomy) and behavioural change. In these circumstances, allowing injury (with precautions) may not be harm, all things considered. (shrink)

Patient-centered care is now recognized as a clinical method and ideal model for patient – health professional relationships, and many definitions have influenced its evolution. Overall the patient-centered care literature has provided relatively little to define patient-centered care at the level of the patient-professional relationship. Additionally, patient-centered care lacks grounding in ethical theory. This thesis asserts that theoretical concepts from the ethics of care can provide a stronger conceptual basis for patient-centered care.This thesis begins with a critical interpretive review of (...) the patient-centered care literature, yielding 12 articles that previously introduced new theoretical and definitional work on patient-centered care and patient-centered communication. Six common themes and ideas were discovered, and include Engaging the Patient as a Whole Person, Recognizing and Responding to Emotions, Fostering a Therapeutic Alliance, Promoting an Exchange of Information, Sharing Decision Making, and Enabling Self-Management and Patient Navigation. These elements were then compared to key elements of the ethics of care. This thesis argues that feminists have good reason to consider care as a type of moral duty, and it describes how this duty functions. This thesis also argues that a duty to care is triggered when caregivers are presented with particular substantive forms of vulnerability. Specifically, this thesis argues that vulnerable subjects whose constitutive needs are at risk require particular moral obligations. The links between the ethics of care and patient-centered care are discussed, including how an ethics of care response ought to function in the health care context. Finally, the cases of J.J. and Makayla Sault, two aboriginal girls who refused chemotherapy in favour of traditional aboriginal healing practices, are analyzed. This thesis offers a short scoping review of the bioethics discourse surrounding these cases. A review of this discourse revealed several common themes, which included the peripheral importance of culture and history, the equating of best interests with survival, the supremacy of science-based medicine, and the impartial application of ethical principles. This thesis recommends that health care professionals apply an ethics of care approach to similar ethical dilemmas in the future, which involves shifting one's ethical focus to the central relationships of the case, understanding the unique perspective of the patient's narrative, and promoting a care-based rather than a justice-based approach to problem-solving. (shrink)

The aim of this study was to explore the relational aspects of the consent process for HPV vaccination as experienced by school nurses, based on the assumption that individuals have interests related to persons close to them, which is not necessarily to be apprehended as a restriction of autonomy; rather as a voluntary and emotionally preferred involvement of their close ones. Thirty Swedish school nurses were interviewed in five focus groups, before the school based vaccination program had started in Sweden. (...) The empirical results were discussed in light of theories on relational autonomy. The school nurses were convinced that parental consent was needed for HPV vaccination of 11-year-old girls, but problems identified were the difficulty to judge when a young person is to be regarded as autonomous and what to do when children and parents do not agree on the decision. A solution suggested was that obtaining informed consent in school nursing is to be seen as a deliberative process, including the child, the parents and the nurse. The nurses described how they were willing strive for a dialogue with the parents and negotiate with them in the consent process. Seeing autonomy as relational might allow for a more dialogical approach towards how consent is obtained in school based vaccination programs. Through such an approach, conflicts of interests can be made visible and become possible to deal with in a negotiating dialogue. If the school nurses do not focus exclusively on accepting the individual parent’s choice, but strive to engage in a process of communication and deliberation, the autonomy of the child might increase and power inequalities might be reduced. (shrink)

This paper explores the impacts of neurological intervention on selfhood with reference to recipients’ claims about changes to their self-understanding following Deep Brain Stimulation for treatment of Parkinson’s Disease. In the neuroethics literature, patients’ claims such as: “I don’t feel like myself anymore” and “I feel like a machine”, are often understood as expressing threats to identity. In this paper I argue that framing debates in terms of a possible threat to identity—whether for or against the proposition, is mistaken and (...) occludes what is ethically salient in changes from DBS. Rather, by adopting a relational narrative approach to identity and autonomy, I show that the ethically salient issue from DBS is impacts on autonomous agency—whether one’s actions and beliefs are one’s own, and how DBS may hinder, or foster, embodied, relational autonomy competences. This approach recognizes that if sufficiently significant, impacts on autonomy competences may pose a threat to one’s ability to contribute to the process of authoring one’s own life and so pose a threat to identity formation. I argue this approach resolves the confusion in the literature about whether and how DBS threatens identity and provides a complex picture of how DBS may affect selfhood by disrupting narrative identity formation and revision, distorting agency and/or undermining autonomy. (shrink)

COVID-19 has turned many ethical principles and presuppositions upside down. More precisely, the principle of respect for autonomy has been shown to be ill suited to face the ethical challenges posed by the current health crisis. Individual wishes and choices have been subordinated to public interests. Patients have received trial therapies under extraordinary procedures of informed consent. The principle of respect for autonomy, at least in its mainstream interpretation, has been particularly questioned during this pandemic. Further reflection on the nature (...) and value of autonomy is urgently needed. Relational autonomy has been proposed as an alternative account of autonomy that can more adequately respond to contemporary ethical issues in general and to a pandemic such as the one we are currently facing in particular. As relational autonomy is an emerging notion in current bioethics, it requires further consideration and development to be properly operationalized. This paper aims to show how six different philosophical branches––namely, philosophy of nature, philosophical anthropology, existential phenomenology, discourse ethics, hermeneutics, and cultural anthropology––have incorporated the category of relation throughout the twentieth century. We first delve into primary philosophical sources and then apply their insights to the specific field of medical ethics. Learning from the historical developments of other philosophical fields may provide illumination that will enable bioethics to experience a successful “relational turn”, which has been partially initiated in contemporary bioethics but not yet achieved. (shrink)

Das belgische Parlament verabschiedete am 28. Mai 2002 das Euthanasiegesetz. Hierdurch wurden die verschiedenen Pflegeeinrichtungen mit einem neuen rechtlichen Rahmen konfrontiert. Das neue Gesetz lässt Euthanasie unter bestimmten Voraussetzungen zu. Dieser Beitrag möchte einige Orientierungspunkte für einen vertretbaren Umgang mit dem Euthanasiegesetz in katholischen Pflegeeinrichtungen liefern. Als Ausgangspunkt hierfür gilt der Grundsatz, dass alles Mögliche getan werden muss, um dem Sterbenden und seiner Umgebung den nötigen Beistand und die bestmögliche Betreuung zu geben und seinem Verlangen nach einem menschenwürdigen Lebensende entgegenzukommen. (...) Wird um Euthanasie gebeten, so entscheiden sich die katholischen Pflegeeinrichtungen Belgiens für die palliative Filterprozedur. Bevor hier die Konturen einer solchen Sorge für ein menschenwürdiges Lebensende umrissen werden, werden zunächst einige fundamentale Annahmen zum Menschsein und dem Wert der Autonomie inhaltlich beleuchtet. Der Autor stützt sich hierfür auf eine relationale Auffassung der Person, wie diese innerhalb der personalistischen Strömungen der Ethik entwickelt wird. (shrink)

ZusammenfassungDas belgische Parlament verabschiedete am 28. Mai 2002 das Euthanasiegesetz. Hierdurch wurden die verschiedenen Pflegeeinrichtungen mit einem neuen rechtlichen Rahmen konfrontiert. Das neue Gesetz lässt Euthanasie unter bestimmten Voraussetzungen zu. Dieser Beitrag möchte einige Orientierungspunkte für einen vertretbaren Umgang mit dem Euthanasiegesetz in katholischen Pflegeeinrichtungen liefern. Als Ausgangspunkt hierfür gilt der Grundsatz, dass alles Mögliche getan werden muss, um dem Sterbenden und seiner Umgebung den nötigen Beistand und die bestmögliche Betreuung zu geben und seinem Verlangen nach einem menschenwürdigen Lebensende entgegenzukommen. (...) Wird um Euthanasie gebeten, so entscheiden sich die katholischen Pflegeeinrichtungen Belgiens für die palliative Filterprozedur. Bevor hier die Konturen einer solchen Sorge für ein menschenwürdiges Lebensende umrissen werden, werden zunächst einige fundamentale Annahmen zum Menschsein und dem Wert der Autonomie inhaltlich beleuchtet. Der Autor stützt sich hierfür auf eine relationale Auffassung der Person, wie diese innerhalb der personalistischen Strömungen der Ethik entwickelt wird. (shrink)

In den westlichen Industrienationen gilt das Prinzip der informierten Einwilligung als das Zentralelement medizinischer Forschungsethik. In anderen, stärker die Relationalität als die Individualität von Personen betonenden Kulturen hingegen werden medizinische Entscheidungen traditionell eher durch die Gemeinschaft bzw. ihr Oberhaupt getroffen. Um verschiedenen kulturellen Normen gerecht zu werden, wird international tätigen Forschungsteams häufig empfohlen, den Community Consent und den Informed Consent einzuholen. Ausschlaggebend soll dabei letztlich der Informed Consent des Individuums sein. Es soll die Teilnahme auch dann verweigern können, wenn die (...) Gemeinschaft bzw. ihr Repräsentant dem Vorhaben zugestimmt hat. Der Beitrag diskutiert, ob eine solche Kopplung von Community Consent und Informed Consent tatsächlich geeignet ist, den Ansprüchen beider Prinzipien gerecht zu werden. Es wird argumentiert, dass die Kopplung von Community Consent und Informed Consent ethisch problematisch ist, wenn der Gemeinschaft hierbei ein Vetorecht eingeräumt wird, das geeignet ist, die Realisation konträrer individueller Interessen und damit das Selbstbestimmungsrecht der Betroffenen zu unterlaufen. Um zu gewährleisten, dass in interkulturellen Forschungszusammenhängen sowohl der individuellen als auch der relationalen Autonomie von Personen angemessener Raum gewährt wird, wäre es empfehlenswert, den Informed Consent ausdrücklich mit einer Community Consultation zu koppeln. Hier käme die Entscheidung gegen, aber auch für eine Studienteilnahme in letzter Instanz klar dem Individuum zu, während die Vorzüge einer Einbeziehung der Gemeinschaft in den Entscheidungsfindungsprozess anerkannt und genutzt werden könnten. (shrink)

Research conducted on Brain-Computer Interfaces has grown considerably during the last decades. With the help of BCIs, users can gain a wide range of functions. Our aim in this paper is to analyze the impact of BCIs on autonomy. To this end, we introduce three abilities that most accounts of autonomy take to be essential: the ability to use information and knowledge to produce reasons; the ability to ensure that intended actions are effectively realized ; and the ability to enact (...) intentions within concrete relationships and contexts. We then consider the impact of BCI technology on each of these abilities. Although on first glance, BCIs solely enhance self-determination because they restore or improve abilities, we will show that there are other positive, but also negative impacts on user autonomy, which require further philosophical and ethical discussions. (shrink)

Abstract This paper examines a convergence between Heidegger's reconceptualization of subjectivity and intersubjectivity and some recent work in feminist philosophy on relational autonomy. Both view the concept of autonomy to be misguided, given that our capacity to be self-directed is dependent upon our ability to enter into and sustain meaningful relationships. Both attempt to overturn the notion of a subject as an isolated, atomistic individual and to show that selfhood requires, and is based upon, one's relation to and dependence upon (...) others. The paper argues that Heidegger's notion of authentic Mitsein (being-with) rejects traditional notions of autonomy and subjectivity in favor of a relational model of selfhood. Ultimately, it provides a new point of entry into contemporary debates within feminist philosophy on Heidegger's thinking and defends Heidegger from certain feminist critiques. (shrink)

In this paper, following the taxonomy developed by Mackenzie, Rogers and Dodds of different sources and states of vulnerability, I claim that wild animals are inherently and situationally vulnerable. This is because they can experience suffering as a response to certain internal and external states and have a high exposure to, and a low capacity to cope with, harmful natural processes. From this it follows that we have a moral obligation to support and assist individuals who are occurrently vulnerable and (...) to reduce the risk of dispositional vulnerabilities becoming occurrent in the future, by endorsing some form of what I call ‘environmental enhancement’. Finally, I pay critical attention to how to prevent interventions aimed at ameliorating vulnerability from paradoxically generating pathogenic vulnerabilities. (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 is a selective reading of Love's Labor: Essays on Women, Equality, and Dependency. My aim is twofold: to continue Love Labor's focus on dependency work and relations, adding certain distinctions and questions of my own; and to recognize the conjunction of three perspectives—theoretical, social/political, and personal—that strengthen this focus. I scant particulars of argument and ignore certain issues in the hope of providing a vivid outline of the rewards and demands of dependency as Eva Kittay envisions them.

In international law, ‘humanitarian intervention’ refers to the use of military force by one nation or group of nations to stop genocide or other gross human rights violations in another sovereign nation. If humanitarian intervention is conceived as military in nature, it makes sense that only the most horrible, massive, and violent violations of human rights can justify intervention. Yet, that leaves many serious evils beyond the scope of legal intervention. In particular, violations of women's rights and freedoms often go (...) unchecked. To address this problem, I begin from two basic questions: When are violations of human rights sufficiently serious to require an international response of some sort? What should that response be? By re-orienting the aim and justification of international law to focus on individual autonomy rather than on peace between nations, I argue that women's rights violations other than genocide and mass rape can warrant intervention. Military intervention is often counter-productive to the aim of achieving autonomy, however. I suggest a range of responses to human rights violations that includes military intervention as one end of the spectrum, and combine this with a greater understanding of the scope of human rights violations that require international response. (shrink)

In her book, Politics of Piety: The Islamic Revival and the Feminist Subject, Saba Mahmood analyzes the practices of the women in the mosque movement in Cairo, Egypt. Mahmood argues that in order to recognize the participants as agents, we need to question the assumption that agency entails resistance to norms; moreover, we need to question the feminist allegiance to an unquestioned ideal of freedom. In this paper, I argue that rather than giving up the ideal of freedom, we can (...) explore the possibility that there are different conceptions of freedom, and that the agency of the women in the mosque movement can be understood through a conception of freedom as a practice of connection, or belonging. I develop this alternative paradigm through discussions of four conceptions of freedom: Foucault's theory of agency as self-creation, positive freedom, communitarian freedom, and freedom as resistance. (shrink)

The “new sociology of childhood” replaces the historical notion of children as inherently vulnerable, helpless and in need of protection, with a perception of children as capable of competent, autonomous, social participation. Although this new sociological perception underlies current children's rights literature, Canadian common law, and important Canadian pediatric health care guidelines, children's autonomy in health care contexts remains easily denied or subverted in favour of adult conceptions of their best interests. In order to try to understand why, I use (...) a feminist, relational approach to autonomy to analyze how oppressive social forces might hinder children from developing and exercising their autonomy in health care, and uncover a tendency to silence the voice of the child within bioethical discourse. These results suggest that greater levels of pediatric autonomy could be fostered by overcoming oppressive social forces and by fostering the skills necessary for the development and exercise of autonomy. (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)