The Ableist stare: an interdisciplinary, narrative-driven exploration of staring at disabled bodies.

In this paper, I explore a phenomenon those with visible disabilities are all too familiar with: being stared at for their disabled bodies. Drawing on the interrelated fields of psychology, narrative, autoethnography and philosophy, I argue that staring at disabled bodies morally harms disabled people. This moral harm arises from the fact that not only does staring at disabled people fundamentally treat them as means to ends in which they cannot share, and thus, violates the Kantian formula of humanity, but also because this staring results in further, consequential harms for disabled people as well. In elaborating on these consequential harms, I draw largely on the works of disability ethicists Rosemarie Garland-Thomson and Elizabeth Barnes and argue that staring at disabled people contributes to the hermeneutical injustice disabled people face in their largely ableist world. Having identified these harms, I then explore the ameliorative potential of elevating disability narrative (with various disability narratives largely leading the discussion, including my own), drawing on Hilden Lindemann's Damaged Identities, Narrative Repair, and hope to call attention to the ways in which our broader structurally ableist world contributes to disabled people being stared at for their bodies in such harmful fashion.

Narrative Medicine Theory and Practice: the Double Helix Model.

The genesis of the medical humanities as a discrete academic discipline engendered a need for a theoretical framework, a function taken on by the growing narrative medicine movement. More recently, scholars have begun to develop a critical medical humanities, an analytical movement that emphasises the fundamental enmeshment of the sciences and humanities. Building on Helene Scott-Fordsmand's work on reversing the medical humanities, this paper develops an alternative to the current version of narrative medicine. We propose a new interpretive heuristic, the Double Helix Model, and place it in critical dialogue with the Columbia School's close reading based-approach. Through this new conceptual frame, we suggest that critical narrative medicine may empower clinicians to contribute to the reorientation of the roles of the sciences and humanities, benefiting providers, scholars and patients.

Moral learning through caring stories of nursing staff - OK.

BACKGROUND: Implementing person-centred care (PCC) in nursing homes is challenging due to a gap between theory and practice. Bridging this gap requires suitable education, which focuses on learning how to attune care to the values and preferences of residents and take moral, relational, and situational aspects into account. Staff's stories about the care they provide (i.e. caring stories) may deliver valuable insights for learning about these aspects. However, there is limited research on using staff's narratives for moral learning. OBJECTIVE: This study aims to provide insight into the perspectives of nursing staff on using their caring stories to learn about PCC. RESEARCH DESIGN: In this qualitative research, we conducted two rounds of interviews with 17 participants working in nursing homes. We wanted to obtain nursing staff's perceptions of working with their caring stories and the impact on PCC. ETHICAL CONSIDERATIONS: Participation was voluntary, and participants provided written consent. The study protocol is approved by The Institutional Review Board of the Medical Ethical Committee Leiden-Den Haag-Delft. FINDINGS: Working with caring stories enables nursing staff to provide PCC and improves job satisfaction. It increases awareness of what matters to residents, fosters information rich in context and meaning, and enhances voice and vocabulary. Through in-depth team reflections, nursing staff discussed the significant moments for residents, which centralizes the discussions on the moral quality of care. DISCUSSION: Working with caring stories fosters dialogue on PCC and enhances reflection on ethical situations in daily encounters, contributing to the moral development of nursing staff. Putting nursing staff's narratives at the centre of learning suits their daily practice and intrinsic motivation. Therefore, the outcomes of this study are an addition to the existing literature about using narratives in long-term care. CONCLUSION: Using nursing staff's narratives contributes to PCC and positively impacts nursing staff. We recommend using staff's caring stories as a vehicle for moral learning in the transition to PCC.

Sociocultural and moral narratives influencing the decision to vaccinate among rheumatic disease patients: a qualitative study.

INTRODUCTION/OBJECTIVES: Vaccination is a process that involves individual, social, and ethical aspects, beyond public governance of vaccines or vaccination as a public health concern. The aim of this study is to describe the sociocultural and moral narratives that influence the decision to vaccinate in general and to vaccinate against COVID-19 specifically, among patients at the rheumatology units of two hospitals. METHODS: Qualitative study involving individual semi-structured interviews following an interview guide. We conducted a thematic analysis using the ATLAS.ti software, with further triangulation to verify concordance and aid in the interpretation of the data from a medical anthropology framework and using a narrative ethics approach to gain insight into the participants' underlying moral values. RESULTS: We interviewed 37 patients in total, along with 3 rheumatologists. Five core themes emerged from the analysis to understand the decision to vaccinate: (1) information about vaccines and disease, (2) perceived risk-benefit of vaccination, (3) the physician-patient relationship, (4) governance of vaccination programs, (5) attitudes towards vaccines. Individual and family experiences with vaccination are diverse depending on the type of vaccine. The COVID-19 vaccine, as a new medical technology, is met with more controversy leading to hesitancy. CONCLUSIONS: The decision to vaccinate among Mexican rheumatic disease patients can sometimes involve doubt and distrust, especially for those with a lupus diagnosis, but ultimately there is acceptance in most cases. Though patients make and value autonomous decisions, there is a collective process involving sociocultural and ethical aspects. Key points • The complexity of vaccine decision-making is better identified through a narrative, qualitative approach like the one used in this study, as opposed to solely quantitative approaches • Sociocultural and moral perspectives of vaccination shape decision-making and, therefore, highlight the importance of including patients in the development of effective clinical practice guidelines as well as ethically justified public policy • Sociohistorical context and personal experiences of immunization influence vaccine decision-making much more than access to biomedical information about vaccines, showing that approaches based on the information deficit model are inadequate to fight vaccine hesitancy.

Credentialing Character: A Virtue Ethics Approach to Professionalizing Healthcare Ethics Consultation Services.

In the process of professionalization, the American Society for Bioethics and Humanities (ASBH) has emphasized process and knowledge as core competencies for clinical ethics consultants; however, the credentialing program launched in 2018 fails to address both pillars. The inadequacy of this program recalls earlier critiques of the professionalization effort made by Giles R. Scofield and H. Tristram Engelhardt, Jr.. Both argue that ethics consultation is not a profession and the effort to professionalize is motivated by self-interest. One argument they offer against professionalization is that ethics consultants lack normative expertise. Although the question of expertise cannot be resolved completely, the accusation of self-interest can be addressed. Underlying these critiques is a concern for hubris, which can be addressed in certification and the vetting of candidates.Drawing on the virtue ethics literature of Alasdair MacIntyre and Edmund D. Pellegrino, I argue that medicine is a moral community in which ethics consultants are moral agents with a duty to foster the virtue of humility (or what Pellegrino and Thomasma call self-effacement). The implications of this argument include a requirement for self-reflection in one's role as a moral agent and reflection on one's progress toward developing or deepening virtuous engagement with the moral community of medicine. I recommend that professionalization of clinical ethics consultants include a self-reflective narrative component in the initial certification and ongoing renewal of certification where clinical ethics consultants address the emotional dimensions of their work as well as their own moral development. Adopting a teleological view of ethics consultation and incorporating narratives that work toward that purpose will mitigate the self-interest and hubris of the professionalization project.

'Why They Laugh At Us?': the functions and ethics of humour in Singaporean theatrical depictions of stigmatised illness.

While humour in the context of illness might be perceived to be insensitive or inappropriate, it is used frequently in the medical setting and discussions of illness. This paper strives to answer why humour is used despite these feelings it might elicit, and attempts to outline conditions that inform the ethics of humour in an illness context.This paper analyses two Singaporean theatrical depictions of chronic and stigmatised illnesses: Haresh Sharma's Off Centre (1993), which is about schizophrenia and depression, and Paddy Chew's monologue Completely With/Out Character (1999), on HIV and AIDS. In these plays, humour functions to: first, dispense information on stigmatised illnesses through mediation; second, implicate audiences in stigma-making through defamiliarisation; and third, to exert discursive control for feelings of empowerment. Furthermore, analysing these plays within their contexts demonstrate that humour is crucial for providing a more nuanced understanding of the stigmatised illness experience, since humour can illuminate culturally held notions of sickness and health.While humour is necessary for patients who are routinely misunderstood and alienated, it must be used with discretion to prevent abuse. As this paper demonstrates, the ethics of humour is more nuanced than simply possessing certain identity markers that provide the illusion of exoneration or inclusion. It is also affected by multiple axes of privilege and discrimination. In my conclusion, I argue that the ethics of humour in the illness context is contingent on whether imbalanced power relations and systems of oppression were employed and/or reproduced under the guise of non-seriousness.

Bioethics and the Moral Authority of Experience.

While experience often affords important knowledge and insight that is difficult to garner through observation or testimony alone, it also has the potential to generate conflicts of interest and unrepresentative perspectives. We call this tension the paradox of experience. In this paper, we first outline appeals to experience made in debates about access to unproven medical products and disability bioethics, as examples of how experience claims arise in bioethics and some of the challenges raised by these claims. We then motivate the idea that experience can be an asset by appealing to themes in feminist and moral epistemology, distinguishing between epistemic and justice-based appeals. Next, we explain the concern that experience may be a liability by appealing to empirical work on cognitive biases and theoretical work about the problem of partial representation. We conclude with preliminary recommendations for addressing the paradox and offer several questions for future discussion.

Practical tips for teaching ethics and humanism to medical students.

This article presents the results of a decade's experiment in creating a longitudinal ethics and humanism curriculum for the core clinical year at UNC School of Medicine, North Carolina, United States. This curriculum applies published research on best practices in medical ethics education. Sample comments from course evaluations of the students who have completed this curriculum provide support for its success at achieving its desired learning outcomes. To create a similar ethics curriculum in the core clinical year at other medical schools, there are twelve practical tips:  preparation: read the research on the ethical challenges for medical students; recruit an interdisciplinary teaching team; create cohorts for this aspect of the curriculum that will stay together for the year; grade only with pass/fail; have the students bring the cases from their clinical experiences; feed them if possible, and structure the time together carefully. Use a narrative ethics methodology and introduce alternative methods for student writing and group process. Connect students with literature in medical humanities and bioethics and encourage publication of their narratives. As with any good creation, the whole is more than the sum of its parts, and each campus can adapt these guidelines for their people and programs.

Historical empathy and medicine: Pathography and empathy in Sophocles' Philoctetes.

The aim of this article is to explore the ways in which the engagement with Greek tragedy may contribute fruitfully to the unfolding of empathy in medical students and practitioners. To reappraise the general view that classical texts are remote from modern experience because of the long distance between the era they represent and today, I propose an approach to Greek tragedy viewed through the lens of historical empathy, and of the association between past situations and similar contemporary experiences, in particular. After a brief examination of the concept of empathy, its links with literary reading, and the discussion of these interrelations within the training of narrative medicine, and narrative ethics in particular, the focus turns to selected parts of Sophocles' Philoctetes, such as the disease scene-an ancient example of pathography. Here Neoptolemus' empathy for Philoctetes' situation and its consequences are explored with specific interest in the modern readers' affective response in connection with their own experiences in medical practice. Neoptolemus' ethical conflict, which is resolved by his decision to care for Philoctetes, and the problematic nature of this attitude are both indicative of the aim of Greek tragedy to problematize universal issues and thus to point towards the instability of human life and the fluidity of human nature. Realizing through historical empathy the precariousness of human existence may lead to a better understanding and hence better care for others and open new perspectives in the development of empathy within the context of contemporary medical education and practice.

Writing the worlds of genomic medicine: experiences of using participatory-writing to understand life with rare conditions.

The diagnostic and treatment possibilities made possible by the development and subsequent mainstreaming of clinical genomics services have the potential to profoundly change the experiences of families affected by rare genetic conditions. Understanding the potentials of genomic medicine requires that we consider the perspectives of those who engage with such services; there are substantial social implications involved. There are increasing calls to think more creatively, and draw on more participatory approaches, in evoking rich accounts of lived experience. In this article, we discuss our rationale for, and experiences of, using 'participatory-writing' to understand the diverse, variable and multilayered everyday lives of families and how these correspond with the emerging, rapidly changing and complex field of genomic medicine. Participatory-writing has many benefits as a method for social inquiry. Writing can be expressive and self-revelatory, providing insight into personal and sensitive topics. Writing together produces new conversations and relationships. Pieces written by participants have the potential to affect readers, evoking and enlivening research and prompting professional change. Working with a writing tutor, we organised a participatory-writing programme for families touched by genetic conditions. This involved a series of workshops with an emphasis on building confidence in expressing lived experience through experimenting with different writing techniques. Afterwards we arranged reflective interviews with participants. We drew on dialogical narrative analysis to engage with participants' written pieces, and highlight what everyday life is like for the people who live with, and care for, those with genetic conditions. The stories produced through our writing-groups unfold the implications of new genomic technologies, illuminating how genomics acts to (and likewise, fails to) reconfigure aspects of people's lives outside of the clinic, while simultaneously existing as a sociotechnical frame that can eclipse the wider contexts, challenges and liveliness of life with rare genetic conditions.

Science fiction in bioethics: a role for feminist narratology.

This article explores the various reasons science-fictional references feature so prominently in bioethical debate, particularly regarding emerging reproductive biotechnologies. It will reflect on how science-fictional references are often co-opted in bioethics scholarship to promote technoconservatism, before considering how bioethicists can engage more appropriately with this genre in practice. This will include a discussion of which kinds of texts might be best suited to stimulate meaningful debate, and how using tools of literary analysis, such as narratology, can maximise the potential benefits of uniting these fields.

'Living in a Material World': Frankenstein and new materialism.

This paper uses concepts from Karen Barad's theories from quantum physics and other theoretical approaches from new materialism to show how Frankenstein can be used to introduce this new framework and to challenge an older one based on dualism, representationalism and individualism. A new ethical understanding of the message of the text emerges from this reading-one that rethinks the prohibitions against 'playing God' or creating the unnatural and relies instead on an ethics of care.

To be alive when dying: moral catharsis and hope in patients with limited life prognosis.

The Stoics considered that in order to die well, one must previously have lived (well) and not merely existed, an assertion which will not be contested in this paper. The question raised here is whether an individual whose life expectancy is jeopardized by serious illness or whose life has not been lived to the 'full' for whatever reason should have to abandon all hope or, alternately, whether that life could still somehow be saved (in an ethical sense). One clear obstacle to achieving this stems from (bad) moral character, given that moral character is an element which conditions an individual's moral behaviour, as pointed out by Beauchamp and Childress and particularly Pellegrino and Thomasma. The transformation of moral character requires time and effort but the testimonies of patients who have given their lives a radical new direction upon being diagnosed with a serious illness seem to show the existence of a peculiar phenomenon of moral catharsis. In this paper we attempt to illustrate that this alleged phenomenon is not the result of a kind of cataleptic impression but rather the result of a dialectic and narrative process, during which a first hope of healing is dashed, unveiling a new sense in the illness. Its fulfillment provides the patient with a final hope.

Lessons from the frontlines: a junior doctor's experience of the first wave of the COVID-19 pandemic in a resource-limited setting.

COVID-19 has stressed healthcare systems across the globe. We present the experience of an intern medical officer working in a tertiary care hospital during the first wave of the pandemic in Sri Lanka. Her narrative describes how the stress of the pandemic brought into sharp focus the strengths and weaknesses in the health system. We suggest some strategies to improve our health services as the world faces the second wave and an uncertain future. These include structural changes in healthcare services at institutional and national levels, focused educational programmes for healthcare professionals to impart generic skills of disaster management, and the development of telehealth services and computerisation of health systems. We believe that we must maintain this focus to ensure that our patients can be guaranteed quality healthcare in the future.

Dialéctica de la esperanza en pacientes con pronóstico de vida limitado. Aspectos éticos y narrativos / Dialectic of hope in patients with a limited life expectancy. Ethical and narrative aspects

El derecho del paciente a conocer su información clínica se corresponde con el deber del profesionalsanitario, en especial del médico responsable de su atención, a proporcionárselo. Sin embargo, en el casode los enfermos cuyo pronóstico de vida es limitado, esto presenta varias dificultades. Determinar el con-tenido de este derecho es complicado, porque depende de las circunstancias. Esto favorece la conspiraciónde silencio, cuya causa principal puede cifrarse en el mantenimiento de la esperanza del paciente. Ahorabien, condenar al paciente a una falsa esperanza impide que éste elabore un proceso de duelo, que exigerenunciar a aquélla y abrirse a otra esperanza indeterminada de contenido abierto. En este trabajo trata-mos de bosquejar la estructura de este proceso dialéctico, que puede explicarse, en términos narrativos, através de la estructura del mito heroico, que resulta operativo aun cuando falte la estructura energéticadel carácter moral y que es graduable a la medida de cada persona.(AU)

The patient’s right to know his/her clinical information corresponds with the duty of the health careprofessional, especially the physician responsible for his/her care, to provide it. However, in the case of pa-tients whose life prognosis is limited, this presents several difficulties. Determining the content of this rightis complicated because it depends on the circumstances. This favors the conspiracy of silence, the maincause of which can be found in the maintenance of the patient’s hope. However, condemning the patientto a false hope prevents him/her from developing a grieving process, that requires renouncing that hopeand embracing another undetermined hope of open content. In this work we try to outline the structure of this dialectical process, which can be explained, in narrative terms, through the structure of the heroicmyth, which is functional even when the energetic structure of the moral character is missing and which isadjustable for each person.(AU)

Race, Power, and COVID-19: A Call for Advocacy within Bioethics.

Events in 2020 have sparked a reimagination of how both individuals and institutions should consider race, power, health, and marginalization in society. In a response to these developments, we examine the current and past limitations of the ways in which bioethicists have considered race and, more generally, discourses of marginalization. We argue that the foundational principle of justice necessitates that bioethics, as an institution, maintain an active voice against systemic injustice. To carry out this charge, bioethics as a field should promote alternative narratives-"counter storytelling"-to the mainstream voices that have traditionally been heard and accepted, largely without opposition. Additionally, we engage with both Post-Colonial and Critical Race Theory, which we believe are important tools for bioethics in pursuit of equity. Ultimately, we advocate for a proactive form of bioethics that actively resists and denounces injustice and which considers a much wider variety of voices about justice than bioethics has historically considered.

Disability and the Damaging Master Narrative of an Open Future.

It is sometimes argued that medical professionals should protect a future child's rights by prohibiting disabled parents from using technology to deliberately have a disabled child because disability is taken as an inevitable, severe threat to a child's otherwise "open" future. I will first argue that the open future that allegedly protects a child's future autonomy is precluded by the very conditions needed to develop that future autonomy. Any child's future will be narrowed as they are socialized in a way that gives them the capacity for autonomous choice. However, oppressive master narratives can diminish a future child's autonomy by distorting their narrative identity and constricting their agency. In fact, the open future argument does just this by advancing one of the most damaging master narratives about disability: that disability inevitably and severely restricts a person's autonomy and closes their future.

A brief and personal history of 'what's in a name' in reproductive genetics.

Although Juliet's claim, 'What's in a name? That which we call a rose by any other name would smell as sweet', may apply to family names, 'that which we call' embryos and procedures in reproductive genetics often smell sweet because the names were created to perfume not-so-sweet-smelling practices. Reproductive-genetic scientists and clinicians, including myself, have used perfumed names to make our research smell sweet for research ethics boards, research grant funders, government regulators, hospital administrators and the general public. The sweet-smelling names in reproductive genetics explored here include 'pre-embryo', preimplantation genetic 'diagnosis', 'normal' embryo, 'suitable' embryo, 'healthy' embryo, preimplantation genetic 'testing', 'non-invasive prenatal testing', 'donation', and most recently 'mitochondrial replacement therapy', a sweet-smelling name for germline nuclear transfer prohibited in antireproductive cloning legislation in most countries. In order for informed choices to occur for women who come to clinicians for information regarding reproductive genetics, and for transparency of scrutiny by research ethics boards, governmental regulators and the general public, it is essential that we consider the real meaning of sweet-smelling names in reproductive genetics.

Telling, Hearing, and Believing: A Critical Analysis of Narrative Bioethics.

Narrative ethics taps into an inherent human need to tell our own stories centred on our own moral values and to have those stories heard and acknowledged. However, not everyone's words are afforded equal power. The use of narrative ethics in bioethical decision-making is problematized by a disparity in whose stories are told, whose stories are heard, and whose stories are believed. Here, I conduct an analysis of narrative ethics through a critical theory lens to show how entrenched patterns of narrative neglect in medicine are harming not only our capacity to make use of narrative ethics but also our capacity to deliver effective healthcare. To illustrate this point, I use three examples where the patient's gender affects how their stories unfold: autism, weight, and pain management. From these, I argue that the use of narrative ethics without the application of a critical theory lens risks the exacerbation of what Miranda Fricker refers to as "testimonial injustice," the prima facie harm experienced by individuals whose credibility is undermined by others' prejudices. Finally, I suggest that narrative ethics can be a powerful tool for mitigating oppressive practices in medicine if we couple it with critical analysis that enables us to understand the power dynamics at play in storytelling.

A Futile Use of Futility.

As the rates of intravenous opioid use have increased, so have its associated medical complications, such as endocarditis, and known interventions, such as heart-valve replacements. For many patients, including Jacob, whose case was brought to my psychiatric consult service and to my colleagues in the clinical ethics service, relapse increases the risk of repeat endocarditis and the need for repeat surgical interventions. Previous works have posed the bioethical quandary regarding the responsibilities of a surgeon in these repeat procedures and whether a surgeon may ethically refuse to perform a repeat intervention in a patient who has relapsed. Notions of futility are commonly used to navigate this complex terrain, and they were the focus of the ethics consideration given to Jacob's case, in which surgeons were reluctant to perform valve replacements. In this narrative essay, I interrogate the concept of futility by appealing to its history and variable meanings, and I argue against its relevance in cases like Jacob's. I propose that a more suitable bioethical approach in such cases would consider resource allocation, the sociocultural stigma of addiction, and the interpersonal and narrative factors that make each case unique.