This section welcomes submissions addressing literature as a means to explore ethical issues arising in healthcare. “Literature” will be understood broadly, including fiction and creative nonfiction, illness narratives, drama, and poetry; film studies might be considered if the films are adaptations from a literary work. Topics include in-depth analysis of literary works as well as theoretical contributions, discussions, and commentary about narrative approaches to disease and medicine, the way literature shapes the relationship between patients and healthcare professionals, the role (...) of speculative fiction as a testing ground for future scenarios in healthcare, and so on. Articles discussing the uses of literature for bioethics education and outreach will be particularly appreciated. Research on literature not originally written in English will be considered as long as it has also been published in translation. Submissions should include an abstract and should conform to theCQGuidelines for Contributors. To submit an article or discuss a suitable topic, write to Antonio Casado da Rocha [email protected].:This article proposes a concept of narrative autonomy to supplement existing accounts in healthcare ethics. This is done by means of a comparison between three end-of-life scenarios: Tolstoy’sThe Death of Ivan Ilyichand two related contemporary stories by Lorrie Moore and Bernhard Schlink, which explore some problems arising when extremely individualistic notions of patient autonomy are put into practice. It is argued that the best model for palliative care is a cooperative one in which patient autonomy is understood as essentially social, and that involves decisional, executive, informational, and narrative dimensions. (shrink)

This article tries to shed light on the difference between human autonomy and AI-driven machine autonomy. The breadth of the studies concerning this topic is constantly increasing, and for this reason, this discussion is very narrow and limited in its extent. Indeed, its hypothesis is that it is possible to distinguish two kinds of autonomy by analysing the way humans and robots narrate stories and the types of stories that, respectively, result from their capability of narrating stories (...) on their own. To approach the question of autonomy and its different interpretations in robots and humans, using narratives and stories as a lens, I proceed through four steps. First, I provide a brief summary concerning the state of the art with regard to issues concerning autonomy and AI. Second, I focus on specific issues concerning AI that are applied to storytelling. Third, I progressively approach narrative autonomy through what could seem a useless digression by addressing the problem of human creativity in relation to machine creativity. Fourth, I hypothesize a radical difference between narrative autonomy—which is proper to humans—and storytelling capability, which can be observed in both humans and machines. (shrink)

We all want things. And although we might disagree on just how significant our wants, desires, or preferences are for the matter of how well we fare in life, we would probably all agree on some of them having some significance. So any reasonable theory about the human good should in some way acknowledge this. The theory that most clearly meets this demand is of course preferentialism, but even pluralist theories can do so. However, then they will at the same (...) time bring aboard a classical problem for preferentialism, namely that of discriminating among preferences. Not all preferences would seem to make contributions to our well-being and there should be some set of criteria which at least makes it intelligible why there is such a difference and that perhaps can even be used in order to evaluate hard cases. (shrink)

In the last two decades, interest in narrative conceptions of identity has grown exponentially, though there is little agreement about what a "life-narrative" might be. In connecting Kierkegaard with virtue ethics, several scholars have recently argued that narrative models of selves and MacIntyre's concept of the unity of a life help make sense of Kierkegaard's existential stages and, in particular, explain the transition from "aesthetic" to "ethical" modes of life. But others have recently raised difficult questions both (...) for these readings of Kierkegaard and for narrative accounts of identity that draw on the work of MacIntyre in general. While some of these objections concern a strong kind of unity or "wholeheartedness" among an agent's long-term goals or cares, the fundamental objection raised by critics is that personal identity cannot _be_ a narrative, since stories are artifacts made by persons. In this book, Davenport defends the narrative approach to practical identity and autonomy in general, and to Kierkegaard's stages in particular. (shrink)

In this paper we defend the notion of narrative identity against Galen Strawson's recent critique. With reference to Elyn Saks's memoir of her schizophrenia, we question the coherence ofStrawsons conception of the Episodic self and show why the capacity for narrative integration is important for a flourishing life. We aho argue that Scú put pressure on narrative theories that specify unduly restncúve constraints on self-constituting narratives, and chrify the need to distinguish identity from autonomy.

In the mid to late 1980s a debate arose over the moral and legal authority of advance medical directives. At the center of this debate were two point-counterpoint law journal articles by Rebecca Dresser and Nancy Rhoden. What appeared to have the makings of an ongoing critical dialogue ended with the untimely death of Nancy Rhoden. Rebecca Dresser, however, has continued her challenge of advance directives in numerous publications, most recently in a critique of Ronald Dworkin's Life's Dominion. Like Rhoden, (...) Dworkin has been a staunch advocate of advance directives as an exercise of what has come to be referred to as prospective or precedent autonomy. In this paper I will consider a number of the issues that Dresser has repeatedly raised about the infirmities of advance directives, and suggest that it is from an understanding of and appreciation for the narrative dimension of the life of a person that advanced directives draw one of their most powerful justifications. (shrink)

In the mid to late 1980s a debate arose over the moral and legal authority of advance medical directives. At the center of this debate were two point-counterpoint law journal articles by Rebecca Dresser and Nancy Rhoden. What appeared to have the makings of an ongoing critical dialogue ended with the untimely death of Nancy Rhoden. Rebecca Dresser, however, has continued her challenge of advance directives in numerous publications, most recently in a critique of Ronald Dworkin's Life's Dominion. Like Rhoden, (...) Dworkin has been a staunch advocate of advance directives as an exercise of what has come to be referred to as prospective or precedent autonomy. In this paper I will consider a number of the issues that Dresser has repeatedly raised about the infirmities of advance directives, and suggest that it is from an understanding of and appreciation for the narrative dimension of the life of a person that advanced directives draw one of their most powerful justifications. (shrink)

Those masterful images because complete Grew in pure mind, but out of what began? A mound of refuse or the sweepings of a street, Old kettles, old bottles, and a broken can, Old iron, old bones, old rags, that raving slut Who keeps the till. Now that my ladder's gone, I must lie down where all the ladders start In the foul rag and bone shop of the heart.

Joshua Braun's (2007) analysis of narrative conventions in the media brings a much-needed gaze to a neglected area of scholarship in bioethics. Bioethicists often invoke public debate of contentiou...

For nearly two decades, ethicists have expressed concerns that the further development and use of memory modification technologies (MMTs)—techniques allowing to intentionally and selectively alter memories—may threaten the very foundations of who we are, our personal identity, and thus pose a threat to our well-being, or even undermine our “humaneness.” This paper examines the potential ramifications of memory-modifying interventions such as changing the valence of targeted memories and selective deactivation of a particular memory as these interventions appear to be at (...) the same time potentially both most promising clinically as well as menacing to identity. However, unlike previous works discussing the potential consequences of MMTs, this article analyzes them in the context of the narrative relational approach to personal identity and potential issues related to autonomy. I argue that such a perspective brings to light the ethical aspects and moral issues arising from the use of MMTs that have been hidden from previously adopted approaches. In particular, this perspective demonstrates how important the social context in which an individual lives is for the ethical evaluation of a given memory-modifying intervention. I conclude by suggesting that undertaking memory modifications without taking into account the social dimension of a person’s life creates the risk that she will not be able to meet one of the basic human needs—the autonomous construction and maintenance of personal identity. Based on this conclusion, I offer some reflections on the permissibility and advisability of MMTs and what these considerations suggest for the future. (shrink)

Volume 20, Issue 8, August 2020, Page 104-106.

In recent years, several studies have advocated the need to expand the concept of patient autonomy beyond the capacity to deliberate and make decisions regarding a specific medical intervention or treatment (decision-making or decisional autonomy). Arguing along the same lines, this paper proposes a multidimensional concept of patient autonomy (decisional, executive, functional, informative and narrative) and argues that determining the specific aspect of autonomy affected is the first step towards protecting or promoting (and respecting) patient (...) autonomy. These different manifestations of autonomy are not mutually dependent; there may be patients who have problems in one dimension, while at the same time being fully autonomous in others. Nevertheless, a close interaction has been observed between the various dimensions and indeed, a phenomenological analysis shows that damage to or a reduction in one aspect of people’s capacity for self-government generally affects other aspects of their autonomy, which in turn disrupts their identity and the way in which they see themselves and are seen by others. In this paper, I shall examine some of these interactions and show how they may lie at the heart of the problem of poor treatment adherence (where adherence is defined as being the extent to which a patient’s behavior over time coincides with the recommendations made by and agreed with their health professional). One example given is that of psoriasis, a chronic skin disease with a very poor adherence record. In Spain, it is calculated that 85% of patients diagnosed with mild to moderate psoriasis fail to comply properly with their treatment, and figures from other parts of the world are similar. Although there are many possible causes for non-adherence among psoriasis patients, assessing their decisional, executive and narrative capacities and taking appropriate action based on the results may help increase adherence rates. (shrink)

This book is part of the growing field of practical approaches to philosophical questions relating to identity, agency and ethics, working across continental and analytical traditions. Kim Atkins explains and justifies the basis of the practical approach through an explication of the structures of human embodiment and an account of how those structures necessitate a narrative model of selfhood, understanding and ethics. She highlights how recent work on agency and autonomy implicitly draws upon conceptions of embodiment and intersubjectivity (...) that underpin the narrative view. (shrink)

시간의 흐름에 따라 변하지 않는 것이 없듯이, 철학적 사유도 시대의 상황에 따라 변화를 거듭한다. 이러한 의미에서 본 논문은 근대 이전의 신 중심 사회의 신화(神話)로부터 벗어난 근대의 자유 혹은 자율성의 시대도 또 하나의 신화임을 논증하고자 한다. 우선, 정치적 의미에서 근대적 자유(주의)의 출발점이 되는 로크의 개인주체의 자유 개념과 개인주체의 자율성을 철학적 원리로서 확립한 칸트의 자율성 개념을 해-체함으로써 근대 주체의 자유 혹은 자율성이 불가능한 근거, 달리 말해 근대 주체의 자율성이 신화(神話)임을 살펴볼 것이다. 그런데 자율성은 바로 개인주체의 자율성이므로, 자율성의 신화는 곧 개인주체의 신화이다. 개인주체가 (...) 해-체임을 보여준다면 그 신화도 폭로될 것이다. 그런 다음, 오늘날 이론적으로나 실천적으로 첨예하게 대립하고 있는 자유주의와 공동체주의의 주체 개념을 비교․비판함으로써 주체의 자유가 현실적으로 어떻게 실현될 수 있는지 살펴보도록 하겠다. 마지막으로, 이런 과정을 가로질러서 그리고 이런 과정 끝에, 근대적 주체 신화의 해-체 다음에 올 자율성은 과연 (불)가능한지, (불)가능하다면 어떻게 (불)가능한지 해체론(deconstruction)의 안내를 받아보기로 하겠다. 개인주체의 자율성이 해-체로 밝혀짐으로써 주체의 자리, 즉 자율성의 신화의 자리에 새로운 이야기(新話) 곧 도래할 신화(新話)의 공간이 마련될 수 있을 것이다. (shrink)

All people are vulnerable to having their self-concepts shaped by others. This article investigates that vulnerability using a theory of narrative self-constitution. According to narrative self-constitution, people depend on others to develop and maintain skills of self-narration and they are vulnerable to having the content of their self-narratives co-authored by others. This theoretical framework highlights how vulnerability to co-authoring is essential to developing a self-narrative and, thus, the possibility of autonomy. However, this vulnerability equally entails that (...) co-authors can undermine autonomy by contributing disvalued content to the agent’s self-narrative and undermining her authorial skills. I illustrate these processes with the first-hand reports of several women who survived sexual abuse as children. Their narratives of survival and healing reveal the challenges involved in developing the skills required to manage vulnerability to co-authoring and how others can help in this process. Finally, I discuss some of the implications of co-authoring for the healthcare professional and the therapeutic relationship. (shrink)

Personen erz hlen ihr Leben - eine These dieser Art ist vielerorts popul r. Aber es fehlt bislang an ausgearbeiteten Argumenten f r sie, ebenso wie an einer strengen Definition des Begriffs der Narrativit t. Das vorliegende Buch bietet Abhilfe. Zun chst stellt es einen Beitrag zur Theorie personaler Autonomie dar. Eine Analyse des zentralen Begriffs der Identifikation wird vorgeschlagen; ebenso wird eine anspruchsvolle biographische Bedingung der Autonomie formuliert und begr ndet. Ob wir das tun, was wir wirklich wollen, k (...) nnen wir nur vor dem Hintergrund unseres Wissens ber bestimmte biographische Zusammenh nge entscheiden. Weiter wird eine detaillierte Theorie der Syntax, Semantik und Pragmatik narrativer Sprache entwickelt. Narrativit t basiert nicht nur auf der Form und der Bedeutung von S tzen, sondern hat eine essentielle pragmatische Dimension. Erst vor dem Hintergrund der subjektiven Wahrscheinlichkeiten und der empathischen Verm gen von Teilnehmern in Kontexten sind u erungen Geschichten. Vor diesem Hintergrund wird gezeigt, dass die biographischen Zusammenh nge, die relevant f r Autonomie sind, gerade solche sind, von denen wir erz hlen k nnen. Geschichten artikulieren praktische Gr nde, und es zeichnet Personen als autonome Wesen aus, f r diese narrativen Gr nde empf nglich zu sein. Das Buch wurde 2009 mit dem Wolfgang-Stegm ller-Preis der Gesellschaft f r Analytische Philosophie ausgezeichnet. (shrink)

This volume re-examines traditional interpretations of the rise of modern aesthetics in eighteenth-century Britain and Germany. It provides a new account that connects aesthetic experience with morality, science, and political society. In doing so, the book challenges longstanding teleological narratives that emphasize disinterestedness and the separation of aesthetics from moral, cognitive, and political interests. The chapters are divided into three thematic parts. The chapters in Part I demonstrate the heteronomy of eighteenth-century British aesthetics. They chart the evolution of aesthetic concepts (...) and discuss the ethical and political significance of the aesthetic theories of several key figures, namely the third Earl of Shaftesbury, David Hume, and Adam Smith. Part II explores the ways in which eighteenth-century German thinkers examine aesthetic experience and moral concerns and relate to the work of their British counterparts. The chapters here cover the work of Kant, Moses Mendelssohn, Alexander Gottlieb Baumgarten, and Madame de Staël. Finally, Part III explores the interrelation of science, aesthetics, and a new model of society in the work of Goethe, Johann Wilhelm Ritter, Friedrich Hölderlin, and William Hazlitt, among others. This volume develops unique discussions of the rise of aesthetic autonomy in the eighteenth century. In bringing together well-known scholars working on British and German eighteenth-century aesthetics, philosophy, and literature, it will appeal to scholars and advanced students in a range of disciplines who are interested in this topic. (shrink)

This monograph develops an argument for the following view: In leading an autonomous life, persons make choices and adopt attitudes of a distinctive kind. To justify these choices and attitudes, they need to draw on knowledge about their biographies. More specifically, their biographies are a source of a distinctive type of practical reasons. These reasons are typically such that their adequate articulation will have a narrative structure. Along the way, the book develops what has been called "the best analysis (...) of the concept of narrativity currently on offer" (Journal of Literary Theory 2011). This monograph has received the Wolfgang Stegmüller award of the German Society for Analytic Philosophy (GAP) in 2009. (shrink)

Christine Korsgaard attempts to reinterpret Kantian ethics in a way that might alleviate Bernard Williams’ famous worry that a man cannot save his drowning wife without determining impartially that he may do so. She does this by dividing a reflective self that chooses the commitments that make up an agent’s practical identity from a self defined as a jumble of desires. An agent, she then argues, must act on the commitments chosen by the reflective self on pain of disintegration. Using (...) Harry Frankfurt’s emphasis on love as a final end, I argue that disintegration as motivation is not a more acceptable motivation than impartiality and so does not adequately address Williams’ criticism. I also argue that the idea of a divided self either leads to an infinite regress or to an implausible description of how our commitments evolve and change. To make this last claim, I discuss a case from John Updike’s novel 'In the Beauty of the Lilies.'. (shrink)

I have become curious about reciprocity within clinical practice. A vast topic that mobilizes considerations of money, knowledge, kinship, power, culture, and uses of the body, reciprocity is a strong means by which to achieve the egality required of just health care. Within health care, reciprocity might enable not only so‐called shared decision‐making and patient autonomy. It might open the door to mutual acknowledgement of the value of each participant's beliefs and habits. It might appear as a humble realization (...) that no one understands what health is and a concurrent welcoming curiosity about one another's conception of how the body and speech and mind work. From the intimate to the international levels of care, such forms of reciprocity may culminate in the radical and powerful state of reciprocal recognition.In this short essay, I will focus on one aspect of reciprocity in health care: the narrative and potentially reciprocal nature of attention in health care. A critical element in the development of therapeutic alliance, clinical accuracy, and effective practice, attention requires a donation of the self as a vessel into which can enter that which is perceived or, from the other side, a penetrating of that which is perceived so that one sees it from within its own vessel. (shrink)

Tim Henning, Person sein und Geschichten erzählen: Eine Studie über personale Autonomie und narrative Gründe Content Type Journal Article Pages 1-3 DOI 10.1007/s10677-012-9341-z Authors Logi Gunnarsson, Department of Philosophy, University of Potsdam, 14469 Potsdam, Germany Journal Ethical Theory and Moral Practice Online ISSN 1572-8447 Print ISSN 1386-2820.

It is often emphasised that persons diagnosed with borderline personality disorder show difficulties in understanding their own psychological states. In this article, I argue that from a phenomenological perspective, BPD can be understood as an existential modality in which the embodied self is profoundly saturated by an alienness regarding the person’s own affects and responses. However, the balance of familiarity and alienness is not static, but can be cultivated through, e.g., psychotherapy. Following this line of thought, I present the idea (...) that narrativising experiences can play an important role in processes of appropriating such embodied self-alienness. Importantly, the notion of narrative used is that of a scalar conception of narrativity as a variable quality of experience that comes in degrees. From this perspective, narrative appropriation is a process of gradually attributing the quality of narrativity to experiences, thereby familiarising the moods, affects, and responses that otherwise govern ‘from behind’. Finally, I propose that the idea of a narrative appropriation of embodied self-alienness is also relevant to the much-debated question of personal responsibility in BPD, particularly as this question plays out in psychotherapeutic contexts where a narrative self-appropriation may facilitate an increase in sense of autonomy and reduce emotions of guilt and shame. (shrink)

Background: Over the last decade, new healthcare policies are transforming healthcare practices towards independent living and self-care of older people and people with a chronic disease or disability within the community. For professional caregivers in home care, such as nurses, this requires a shift from a caring attitude towards the promotion of patient autonomy. Aim: To explore how nurses in home care deal with the transformation towards fostering patient autonomy and self-care. Research design and context: A case study (...) was conducted in a professional development course for home care nurses, including participant observations and focus groups. The theoretical notion of ‘relational agency’ and the moral concept of ‘practices of responsibility’ were used to conduct a narrative analysis on the nurses’ stories about autonomy. Participants: Eight nurses, two coaches and two university lecturers who participated in the learning circle. Ethical considerations: Informed consent was sought at the start of the course and again, at specific moments during the course of the learning circle. Findings: Three main themes were found that expressed the moral demands experienced and negotiated by the nurses: adapting to the person, activating patients’ strengths and collaboration with patients and informal caregivers. Discussion: On a policy and organisational level, the moral discourse on patient autonomy gets intertwined with the instrumental discourse on healthcare budget savings. This is manifested in the ambiguities the nurses face in fostering patient autonomy in their daily home care practice. To support nurses, critical thinking, moral sensitivity and trans-professional working should be part of their professional development. Conclusion: The turn towards autonomy in healthcare raises moral questions about responsibilities for care. Promoting patient autonomy should be a collaborative endeavour and deliberation of patients, professional and informal caregivers together. (shrink)

Telemedicine is a complex field including various applications and target groups. Especially telehealthcare is seen by many as a means to revolutionize medicine. It gives patients the opportunity to take charge of their own health by using self-tracking devices and allows health professionals to treat patients from a distance. To some, this means an empowerment of patient autonomy as well as an improvement in the quality of care. Others state the dangers of depersonalization of medicine and the pathologization of (...) daily life. This paper examines the ethical implications of telehealthcare, focusing on patient autonomy and quality of care by analyzing metareviews, randomized controlled trials and narrative ethical analyses on the topic. As a result, we conclude that the technically enhanced encounter between patients and health professionals may mean an empowerment of patient autonomy when it goes along with a personal relationship based on trust, assistance and support. When it comes to the quality of care, telehealthcare may lead to an improvement as long it is adopted to the patient’s individual needs. (shrink)

The aim of the study was to explore the experiences of night nurses. An interpretative phenomenological study was undertaken, and 35 nurses working in Italian medical, surgical and intensive care units were purposely recruited. Data were gathered in 2010 by semi‐structured interviews, collecting nurses' narratives, memorable cases and metaphors, aimed at summarising the essence of work as a nurse during the night. The experience of night nursing is based on four interconnected themes: (i) working in a state of alert, (ii) (...) growing by expanding autonomy and responsibility, (iii) assuring sensitive surveillance and (iv) experiencing deep intimacy. Memorable episodes were polarised along (i) expected/unexpected events; (ii) positive/negative epilogues; and (iii) life/death issues. Many of the emergent metaphors described working during the night as being in the middle of a space where an apparent calm scene takes place, but unpredictable factors may suddenly change the order of events and the outcomes, creating chaos. Working during the night alerts nurses, who increase autonomy, expanding their role and assuming more responsibility with respect to that assumed during daily shifts. The nurses' clinical reasoning is based on data they carefully listen to, and on the meaning that nurses give time by time to different noises and silence. While in the past a sense of companionships was reported, a loneliness or a ‘neutral’ experience concerning the relationships with colleagues seems to prevail during night nursing. Working night shifts is a complex task, and specific training must be assured to students/novices. (shrink)

Respect for autonomy is problematic in relation to public health programmes such as vaccination, as the success of such programmes depends on widespread compliance. European countries have different policies for dealing with objectors to vaccination programmes. In some countries compliance is compulsory, while in others objectors are exempted or allowed to enter the programme under specific conditions. In this paper I argue that the objectors should not be treated as a homogenous group as is done in the above-mentioned policies. (...) Objectors have different arguments for not participating in vaccination programmes. Considering the value of respect for autonomy, some but not all of these arguments need to be accommodated by authorities. The concept of 'narrative autonomy' provides criteria to distinguish between tenable and untenable claims to the right to refuse vaccination. Narrative autonomy understands autonomy as essentially linked to identity, as this provides the moral framework with which we assess our first-order preferences. The above-mentioned concept of autonomy is derived from the concept of narrative identity as described by Marya Schechtman. She suggests that the application of the Articulation Constraint and the Reality Constraint enables us to establish the validity of personal narratives. Additionally, form and content features of identity, as proposed by Anthony Laden, will be used as criteria to establish the compatibility of the defectors' arguments with shared scientific and political values. Such compatibility is essential to accommodate respect for autonomy in the context of public health. (shrink)

The clinical relationship has been underexplored in dementia care. This is in part due to the way that the clinical relationship has been articulated and understood in bioethics. Robert Veatch’s social contract model is representative of a standard view of the clinical relationship in bioethics. But dementia presents formidable challenges to the standard clinical relationship, including ambiguity about when the clinical relationship begins, how it weathers changes in narrative identity of patients with dementia, and how the intimate involvement of (...) family fits alongside a paradigmatically dyadic relationship. Drawing on work in recent feminist theory, a critique is offered of the standard clinical relationship in bioethics as underwritten by an individualistic conception of autonomy. An alternative view of the clinical relationship in dementia, one that embraces a relational account of autonomy, is put forward. (shrink)

It has been hypothesized that psychedelic experiences elicit lasting psychological benefits by altering narrative selfhood, which has yet to be explicitly studied. The present study investigates retrospective reports (n = 418) of changes to narrative self that participants believe resulted from, or were catalysed by, their psychedelic experience(s). Responses to open-ended questions were analysed using inductive and deductive thematic coding and interpreted within agent-centred approaches to development and well-being. Themes include decentred introspection, greater access to self-knowledge, positive shifts (...) in self-evaluation processes, greater psychological and behavioural autonomy, and enhanced connectedness with others and the world. While this explorative qualitative study offers some initial support for the explanation that changes to narrative self are a cornerstone of psychedelics' therapeutic and transformative potential, methodological and recruiting limitations preclude the ability to make objective claims and generalizations. Future scientific research is necessary to further elucidate this hypothesized mechanism. (shrink)

This paper attempts to reconcile two apparently opposed ways of thinking about the imagination and its relationship to literature, one which casts it as essentially concerned with fiction-making and the other with culture-making. The literary imagination’s power to create fictions is what gives it its most obvious claim to “autonomy”, as Kant would have it: its freedom to venture out in often wild and spectacular excess of reality. The argument of this paper is that we can locate the literary (...) imagination’s complementary power of cultural articulation in this fictional activity. The suggestion is that we should conceive of the literary imagination as expressing its interests in culture not mimetically but by producing a certain kind of meaning. This meaning is irreducibly narratological, and understanding it helps us to see the role of narrative in bringing into harmony the literary imagination’s interests in both the imaginary and the real. (shrink)

In numerous accounts of both autonomy and freedom, social or relational elements have been offered as conceptual requirements in addition to purely procedural conditions. In addition, it is claimed that social recognition of the normative authority or self-trust of the agent is conceptually required for autonomy. In this paper I argue that in cases where people find themselves completely dislocated from the social and cultural homes that had provided them with the language in which to formulate and express (...) their values, it is clear that social recognition of the sort defended in relational models is causally but not conceptually required for agency to be (re-)established. This is shown by noting that often victims of human tracking or smuggling find themselves in foreign settings where it is quite up for grabs where and how they will attempt to reconstruct a life narrative which they can generally embrace. Therefore, seeing social recognition as conceptually required for autonomous agency or freedom would ignore the variability in the ways that such recognition must be expressed. (shrink)

This article provides empirical evidence of the social context and moral reasoning embedded within a parents’ decision to participate in autism genetics research. Based on in-depth interviews of parents who donated their family’s blood and medical information to an autism genetic database, three narratives of participation are analyzed, including the altruistic parent, the obligated parent, and the diagnostic parent. Although parents in this study were not generally concerned with bioethical principles such as autonomy and the issues of informed consent (...) and/or privacy and confidentiality of genetic information, a critical analysis reveals contextual bioethics embedded within these different narratives. These include the negotiations of responsibility that parents confront in biomedical research, the misguided hope and expectations parents place in genomic science, and the structural barriers of obtaining an autism diagnosis and educational services. Based on these findings, this article demonstrates the limits of a principle-based approach to bioethics and the emergent forms of biological citizenship that takes into account the social situations of people’s lives and the moral reasoning they negotiate when participating in autism genetic research. (shrink)

By 1999, when Atul Gawande's essay “Whose Body Is It, Anyway?” appeared in The New Yorker, patient autonomy had largely trumped physician paternalism in American medical practice. Gawande uses the stories of actual patients to attempt his counter case for physicians' “talking patients through their decisions.” Toward the end of his essay, Gawande acknowledges that “many ethicists find this line of reasoning disturbing,” but he reassures his readers that “the real task isn't to banish paternalism; the real task is (...) to preserve kindness.”What troubles me, however, is not so much the ethical position Gawande takes but the way he structures his narrative to support his position. “Whose Body Is It, Anyway?” offers an important example for close scrutiny because, in my experience, it so effectively engages readers‐especially medical students‐and persuades them to accept the ethical position it puts forward. Yet Gawande's own reflections about this issue do not stop with this essay. As he has gained clinical experience, he has continued his ethical reflections, and the stories that he tells have changed significantly over the years. I will argue here that close reading and careful narrative scrutiny can alert those who read this essay apart from Gawande's later work to some of the pitfalls in this kind of narrative ethics. (shrink)

Although little noticed by practicing theorists, narrative voice influences theoretical work. This essay presents a demonstration of voice as method, concentrating on brief segments of works by Garfinkel and Goffman. We attend to two methodological themes: how theorists use voice to establish intellectual autonomy, and how the use of voice influences credibility with readers. Garfinkel maximizes his autonomy by using narrative techniques that isolate him from his readers, and produce little common context with them as a (...) result. Goffman maintains a context for credibility with his readers by using a personal voice, but he uses this voice to request their indulgence as he follows his autonomous muse. Goffman's narrative self-indulgence prevents him from fashioning a coherent theoretical program for his readers, something Garfinkel's distant voice enables him to achieve. (shrink)

American bioethicists lack the theoretical resources to work in cross‐cultural settings. All we have are two approaches to ethics—principles vs. narratives—that are mostly at odds, and neither of which is up to the job. If moral principles are too abstract to be useful, and if stories cannot provide moral authority, then where do we find our moral norms?

In lieu of an abstract, here is a brief excerpt of the content:How Narrative Counts in Phenomenological Models of SchizophreniaThe author reports no conflicts of interest.Rosanna Wannberg (2024) offers an intriguing and novel critique of the predominant phenomenological model of schizophrenia, the ipseity disturbance hypothesis. According to this model, which was initially proposed by Sass and Parnas (2003), schizophrenia is best understood as arising from a disturbance or instability of minimal or basic self-hood, the sense of being present to (...) oneself and one's experiences (Henriksen, 2022). This disturbance appears as various experiential anomalies, sometimes termed "anomalous self (or world) experiences" or "self disorders," which include such phenomena as alienation from subjective processes, doubt in the existence of the world or one's own existence, fluidity of boundaries between self and others or self and world, and many other phenomena. Many of these have been captured in the Examination of Anomalous Self Experience (Parnas et al., 2005) and the Examination of Anomalous World Experience (Sass et al., 2017).At the same time, some research reveals the presence of self disorders in nonpsychotic conditions like panic disorder (Madeira et al., 2017) and depersonalization/derealization disorder (Sass et al., 2013). There are also competing phenomenological models that posit schizophrenia instead as a disturbance of dialogical self (Lysaker & Lysaker, 2002) or as a disruption of automatic perceptual processing (Uhlhaas & Mishara, 2007). Such works contain implicit critiques of the ipseity disturbance hypothesis that focus on the specificity of self disorders, or else on the specific nature of the underlying disturbance in schizophrenia.Wannberg's critique is distinct from these others: by considering the validity and function of recovery narratives, she raises crucial epistemological and ethical questions about the phenomenological approach to psychopathology, asking not only whose narrative counts, but how narrative counts. In particular, Wannberg questions a phenomenology that, she suggests, might find any ongoing symptoms as evidence of continued alterations of subjectivity, and that would then be dismissive of recovery narratives—a phenomenology that would prioritize the authority [End Page 71] of consciousness, as Wannberg puts it, over the authority of the person.It is worth stating here that the standard phenomenological response would not be to distrust or dismiss accounts of recovery. Ideally, phenomenological models, along with their ongoing theoretical developments and empirical work, are based on a deep respect for patients' experience and self-descriptions, striving to attend to experiences as they are lived without imposing pre-defined constructs that would limit or alter the experiences in a fundamental way (Nordgaard et al., 2013).Questions about the nature of recovery might be addressed within phenomenology by considering the difference between minimal (or basic) self and narrative (or extended) self, a more complex self-understanding or self-interpretation that is founded on the more basic, pre-reflective sense of being alive in the world (Gallagher, 2000; Parnas, 2007). According to proponents of the ipseity disturbance hypothesis, disturbances of basic self-hood can contribute to disturbances of narrative self, such as confusion about one's future goals or difficulties making sense of one's life history, though it is unlikely for disruptions that originate in the narrative self to trickle down to the minimal self (Henriksen, 2022). Such a view might similarly suggest that it would be unlikely for work on the level of the narrative self to lead to improvements in minimal self. Recovery, according to this approach, might best be viewed as an understanding of and compensation for alterations in basic self-hood, such that a person can develop a relatively solid narrative self that accounts for and manages disturbances of minimal self—while the minimal self may also grow more solid through various therapeutic interventions (Skodlar & Henriksen, 2019).Wannberg finds a more transformative possibility in Wittgenstein's grammatical approach, which is concerned with the function and rules of discourse. According to her grammar of recovery, recovery narratives are not only the product of a process of meaning-making and self-understanding, but they can create meaning and new realities. Furthermore, this process, according to Wannberg, has an inherently social and normative quality to it: the self-work that occurs in recovery and the recovery narrative involves the development of agency, autonomy, and responsibility in a social world... (shrink)

Überwindet Technik das unheimlich Unbeherrschbare? Oder wird sie uns selbst unheimlich? Zwei scheinbar widersprüchliche Narrative prägen die Geschichte und auch die Theorie der Technik: Das Narrativ der Entzauberung beschreibt, wie eine als fremd und gefährlich erfahrene Natur durch Verwissenschaftlichung und Technisierung gezähmt wurde. Das Narrativ der Verzauberung schildert, wie uns Artefakte und technologische Möglichkeiten unheimlich werden, insbesondere wenn sie sich zu verselbständigen scheinen oder mit „autonomem“ Eigensinn gegenübertreten. In den heutigen Debatten um selbstlernende, ubiquitär verteilte, im Assistenzmodus unsichtbare, dabei (...) opake Techniken schwingt das unheimliche Moment einer „Verselbständigung“ von Technik mit – und trägt im Anschluss an die Mechanisierungs- und Automatisierungsdiskurse des 20. Jahrhunderts zur „Dämonisierung“ der Technik bei. Technik macht Welt einerseits vertraut und nachvollziehbar: Paradigmatisch wird dies in der Idee, dass etwas dann verstanden wird, wenn es technisch rekonstruiert werden kann. Andererseits wird die technische Reproduktion von Welt – oder deren radikale Umgestaltung zu einer entfremdeten – als etwas Verstörendes erlebt. Spätestens, wenn Artefakte zu tun scheinen, „was sie wollen“ oder technische Großsysteme die Lebenswelt nach ihren „Eigenlogiken“ prägen, ist eine schon von Freud benannte Grenze erreicht, an der wir verunsichert werden, ob wir überhaupt noch in der modernen Welt leben. (shrink)

Decisions based on ethics confront nurses daily. In this account, a cardiac nurse struggles with the challenge of securing health care benefits for Justin, a patient within the American system of health care. An exercise therapy that is important for his well-being is denied. The patient’s nurse and an interested insurance agent develop a working relationship, resulting in a relational narrative based on Justin’s care. Gadow’s concept of a relational narrative and Keller’s concept of a relational autonomy (...) guide this particular case. As an ethics framework influenced by feminist ethical theory, Gadow’s, Keller’s and Tisdale’s ideas demonstrate the fluidity with which the nurse and others can work while maintaining both autonomy and engagement without being self-sacrificing. (shrink)

Decisions based on ethics confront nurses daily. In this account, a cardiac nurse struggles with the challenge of securing health care benefits for Justin, a patient within the American system of health care. An exercise therapy that is important for his well-being is denied. The patient’s nurse and an interested insurance agent develop a working relationship, resulting in a relational narrative based on Justin’s care. Gadow’s concept of a relational narrative and Keller’s concept of a relational autonomy (...) guide this particular case. As an ethics framework influenced by feminist ethical theory, Gadow’s, Keller’s and Tisdale’s ideas demonstrate the fluidity with which the nurse and others can work while maintaining both autonomy and engagement without being self-sacrificing. (shrink)

Alasdair MacIntyre's recent thinking both about the concept of a practice and the existence of narrative unity in human life raises important questions about how we should view clinical medicine today. Is it possible for clinical medicine to pursue patient well-being in a society (allegedly) afflicted with what he calls modernity? Here it is argued that MacIntyre's pessimistic view of the individual in contemporary society makes his call for patient autonomy in the clinical setting pointless. Finally, recent work (...) in gerontology is cited to make three points: first, MacIntyre's pessimism about us is too extreme; second, the concept of a fictionalized personal history is closer to reality than either MacIntyre's notion of narrative unity or the ideas of his imagined opponent (Sartre); and finally, we should not expect clinical medicine to produce patient well-being, when this is understood narratively. (shrink)

J. B. Schneewind's "The Invention of Autonomy" has been hailed as a major interpretation of modern moral thought. Schneewind's narrative, however, elides several serious interpretive issues, particularly in the transition from late medieval to early modern thought. This results in potentially distorted accounts of Thomas Aquinas, Hugo Grotius, and G. W. Leibniz. Since these thinkers play a crucial role in Schneewind's argument, uncertainty over their work calls into question at least some of Schneewind's larger agenda for the history (...) of ethics. (shrink)

In Western countries a considerable number of older people move to a residential home when their health declines. Institutionalization often results in increased dependence, inactivity and loss of identity or self-worth (dignity). This raises the moral question as to how older, institutionalized people can remain autonomous as far as continuing to live in line with their own values is concerned. Following Walker's meta-ethical framework on the assignment of responsibilities, we suggest that instead of directing all older people towards more (...) class='Hi'>autonomy in terms of independence, professional caregivers should listen to the life narrative of older people and attempt to find out how their personal identity, relations and values in life can be continued in the new setting. If mutual normative expectations between caregivers and older people are not carefully negotiated, it creates tension. This tension is illustrated by the narrative of Mr Powell, a retired successful public servant now living in a residential home. The narrative describes his current life, his need for help, his independent frame of mind, and his encounters with institutional and professional policies. Mr Powell sees himself as a man who has always cared for himself and others, and who still feels that he has to fulfil certain duties in life. Mr Powell's story shows that he is not always understood well by caregivers who respond from a one-sided view of autonomy as independence. This leads to misunderstanding and an underestimation of his need to be noticed and involved in the residential community. (shrink)

The choice to pursue fertility treatments is a complex one. In this paper I explore the issues of choice, agency, and gender as they relate to assisted reproductive technologies (ARTs). I argue that narrative approaches to bioethics such as those by Arthur Frank and Hilde Lindemann Nelson clarify judgments about autonomy and fertility medicine. More specifically, I propose two broad narrative categories that help capture the experience of encounters with fertility medicine: narratives of hope and narratives of (...) resistance. This narrative typology captures the inevitable conflict that women feel when they become subjects of fertility medicine. On the one hand, they must remain hopeful; on the other, they must not surrender themselves completely. Nelson's account of counterstories as narratives of resistance helps us see how women can reconcile the experience of a strong desire to have children with the desire to remain authentic and whole. (shrink)

American bioethicists lack the theoretical resources to work in cross‐cultural settings. All we have are two approaches to ethics—principles vs. narratives—that are mostly at odds, and neither of which is up to the job. If moral principles are too abstract to be useful, and if stories cannot provide moral authority, then where do we find our moral norms?