Too good for this world: moral bioenhancement and the ethics of making moral misfits.

Persson and Savulescu argue that moral bioenhancement is not only morally permissible; in some cases, it is morally obligatory. In this article, I introduce a new reason to worry about moral enhancement. I adapt the disability concept of misfit to show how moral enhancement could cause extreme moral disempowerment to those enhanced, which would result in moral injury. I argue that any safety framework that guides the development of moral bioenhancement must be sensitive to the problem of moral misfitting. I present the best case for moral bioenhancement before turning to my own worry concerning the development of moral bioenhancement and its practical implications. Finally, I consider a series of objections and responses.

Body integrity dysphoria and moral responsibility: an interpretation of the scepticism regarding on-demand amputations.

A patient who requests an amputation deemed medically unnecessary by professionals is disqualified per se from being regarded as having medical decision-making capacity. This decision is based on the assumption that there is an option to pursue something other than amputation; such an assumption in many cases overflows into therapeutic obstinacy. This is the case for individuals who have ill or damaged body parts and who wish to avoid recurrent and painful medical treatment designed to save the limb, as well as for individuals affected by body integrity dysphoria (BID). BID is a condition that is recognised by the WHO and is included in the International Classification of Diseases, 11th edition. Individuals who are affected develop an intense feeling of overcompleteness of their body configuration, which leads to the development of a strong sense of dysphoria and consequently the desire to amputate in order to remove the source of such discomfort. In the few cases in which amputation has been carried out, the results have proved successful; the individual's quality of life has improved and they have had no new amputation desires. No medical therapy, including medical amputation, is available currently for individuals affected by the condition. This situation leads many with BID to mutilate themselves. Such events create a challenging ethical dilemma for the medical world.The present paper is focused on the capacity of the individual with BID to do other than request amputation and the implications that this carries regarding moral responsibility. It is proposed that the autonomy of the patient cannot be disqualified by default based on the amputation request, despite its oddity, and that any scepticism demonstrated by the physicians is based on a false preconception of ill will or ignorance, which results in a blaming attitude towards the requesting person.

Psychiatrists' experiences of involuntary care in South Africa: dilemmas for practice in challenging contexts.

Providing for people with psychosocial conditions in crisis is a complex and controversial endeavour that has gained significant attention over the past decade. This increased focus is driven by global calls to reduce coercion, including by the United Nations Committee on the Rights of Persons with Disabilities, who interpret Article 12 of the United Nations Convention on the Rights of Persons with Disabilities in General Comment 1 to advocate for the replacement of substituted decision-making with supported decision-making. Psychiatrists occupy a central role in determining how to care for and respond to individuals with psychosocial conditions in crisis in the midst of these debates. They must protect the rights of people with psychosocial conditions in crisis and provide appropriate support within challenging and dynamic contexts. This responsibility includes promoting the autonomy of people with psychosocial condition while ensuring their long-term health, safety and well-being.In this study, we conducted a phenomenological analysis with a sample of nine psychiatrists in South Africa to explore their experiences with involuntary care and the complex dilemmas they face in delivering healthcare to individuals with mental health conditions. Our findings indicate that psychiatrists encounter significant challenges in preserving patient autonomy, particularly within the resource-limited context of South Africa. Pervasive stigma and insufficient support infrastructure complicate efforts to prioritise autonomy. At the same time, professionals must address the critical need to ensure the long-term safety and well-being of their patients. The absence of involuntary care can exacerbate a person's vulnerability to community stigma and inadequate community support, posing severe risks to their welfare. Balancing between protecting a person's autonomy and addressing the limitations of support structures creates a complex predicament for mental health professionals, often resulting in feelings of isolation and moral distress among psychiatrists.

Black bodies in phenomenological bioethics: cultural othering, 'Corporeal Uncanny' and ethical quandaries of black nurses in Take My Hand and Small Great Things.

The aims of the present article are twofold. First, it attempts to theorise the thematic and ontological intersection between phenomenological and black bioethics and proposes 'Ontic-Black Bioethics', a neologism to evince how the corporeal misconceptions (such as race construct, bodily othering and colourism) become the cultural impediment for black women healthcare professionals. The article draws specific insights from the philosophical anthropology of race, ranging from Richard Polt to Sarah Ahmed, to understand the epistemic structures of scientific racism. Second, it investigates how the racial attitudes of white healthcare professionals and supremacist patients towards black nurses can be potential triggers of cultural othering, corporeal burden and ethical quandaries by closely reading Take My Hand by Dolen Perkins-Valdez (2022) and Small Great Things by Jodi Picoult (2016). For this, the article relies on the theoretical frameworks of cultural phenomenology and somatic attention postulated by Thomas Csordas, Philipa Rothfield and other theoreticians of varying importance. While the corporeality of black nurses is replete with the images of biological misconception and racial-cultural constructs, the epistemic perspectives and literary representations underscoring their bodily and experiential agony have been scarcely examined through the lenses of bioethics. Thus, the article construes the corporeality of black nurses as the confluence of biological and cultural discourses under phenomenological bioethics.

Personalism and boosting organ ResERVOirs: a consideration of euthanasia by removal of vital organs in the Canadian context.

Canada's decriminalisation of assisted death has elicited significant ethical implications for the use of assisted death in healthcare contexts. Euthanasia by removal of vital organs (ERVO) is a theoretical extension of medically assisted death with an increased plausibility of implementation in light of the rapid expansion of assisted death eligibility laws and criteria in Canada. ERVO entails removing organs from a living patient under general anaesthesia as the mechanism of death. While ERVO is intended to maximise the viability of organs procured from the euthanised patient for donation to recipients, ending the lives of patient donors in this manner solely to benefit ill or dying recipient patients merits further ethical consideration. Specifically, the paper explores the application of personalist bioethics in determining whether the means of procuring organs through assisted death justifies the end of improving the lives of those who would benefit from receiving them. Further, by discussing the medical, social and ethical implications of ERVO, I will explicate a broader philosophical understanding of the influences of legalising assisted death on human dignity and conscience.

Empowering the next generation: integrating adolescents into the Reproductive Justice movement.

This article explores the ethical implications of mandatory parental consent requirements for adolescents seeking sexual and reproductive health services (SRHS). Using a Reproductive Justice framework, which identifies systemic barriers to accessing healthcare services, we examine ageism as a potential factor restricting adolescents' access to SRHS. While the Reproductive Justice framework has addressed systemic issues like racism and ableism in healthcare, ageism involving adolescents has been less explored. The article challenges the pertinence of mandatory parental consent requirements-as a potential barrier-for adolescents' access to SRHS. We argue that in the specific context of SRHS (contraceptives, abortion, testing and treatment of sexually transmitted infections), adolescents' autonomy (self-determination) should be respected if they request to access those services independently. From a global health perspective, adolescents have a low prevalence and uneven access to SRHS. To address the issue, we propose the integration of adolescence into the Reproductive Justice movement to empower them through education on how to access the SRHS they need.

Transformational healing: the phenomenology of fulfilment in the face of adversity.

In the last two decades, there has been an explosion of scholarship in the phenomenology of health and illness of great practical significance for clinicians and the allied health professions. 'Healing' has been distinguished from medical 'cure' insofar as it involves a process of existential re-integration even in the face of ongoing illness and incapacity. This article goes further than much existing literature in the field: it examines ways in which illness can trigger for some 'transformational healing'-that is, not simply a return to previous functioning, but positive alterations that open one's life to enhanced fulfilment, authenticity and/or connection. Using philosophical resources and 'pathographies', first-person accounts of illness and healing, we examine six forms, often interconnected, of transformational healing. These involve, in turn: vulnerability, intimacy, resilience, presence, gratitude and transcendence In placing a spotlight on ways in which serious illness, injury and disability can inform positive transformations, we are not minimising the suffering often associated with such conditions. Nonetheless, many individuals experience life-enhancements despite, or even because of, the effects of suffering which can reveal personal strengths, deepened intimacy with others and heightened appreciation of life. The possibility of transformational healing, while far from a universal experience, has personal, philosophical and clinical significance not to be overlooked.

Ranking Future Outcomes Most Important to Parents of Children with Bronchopulmonary Dysplasia.

OBJECTIVE: To assess which potential future outcomes are most important to parents of children with bronchopulmonary dysplasia, a disease that affects future respiratory, medical, and developmental outcomes for children born preterm. STUDY DESIGN: We recruited parents from 2 children's hospitals' neonatal follow-up clinics and elicited their importance rating for 20 different potential future outcomes associated with bronchopulmonary dysplasia. These outcomes were identified and selected through a literature review and discussions with panels of parents and clinician stakeholders, via a discrete choice experiment. RESULTS: One hundred and 5 parents participated. Overall, parents ranked "Will my child be more vulnerable to other problems because of having lung disease?" as the most important outcome, with other respiratory health related outcomes also highly ranked. Outcomes related to child development and effects on the family were among the lowest ranked. Individually, parents rated outcomes differently, resulting in a broad distribution of importance scores for many of the outcomes. CONCLUSIONS: The overall rankings suggest that parents prioritize future outcomes related to physical health and safety. Notably, for guiding research, some top-rated outcomes are not traditionally measured in outcome studies. For guiding individual counseling, the broad distribution of importance scores for many outcomes highlights the extent to which parents differ in their prioritization of outcomes.

Human-centred design, disability and bioethics.

Human-centred design methodologies provide a means to align bioethical advocacy with the needs and desires of disabled people. As a method, human-centred design seeks to locate points of friction in an individual's experience of everyday interactions, specifically in relation to technologies, but potentially in relation to processes and institutions. By focusing on disabled persons and their experiences of institutional organisation, human-centred design practices serve to create a foundation for a bioethical practice that addresses idiosyncratic needs and desires while providing support for disabled persons and their families. In considering how a design-focused bioethics might operate in this way, I focus on advanced sleep phase syndrome and delayed sleep phase syndrome as a way to show how the temporal ordering of institutions disable the participation of individuals with atypical sleep needs. I then turn to the education of deaf students through the exclusive use of sound, which puts them at a significant disadvantage relative to their hearing peers; this example shows how normative ableism obscures itself in attempts to aid disabled people, but an attention to the experience of deaf students show how exclusively auditory learning can be redesigned. Advocating for flexible institutional organisation and practices situates bioethical advocacy as a means to engage with social organisations in ways that create novel opportunities for able-bodied and disabled people alike.

The production of medicoethical misconduct: medical ethics and vivisection in Wilkie Collins's Heart and Science.

Even as Wilkie Collins's Heart and Science continues in the tradition of cautionary tales of medicine and science, it also integrates nineteenth-century discussions of medical ethics, vivisection and women, further building on earlier criticisms of scientific hubris. By indicting a fictional medical doctor and his methodology, Heart and Science depicts the extremes of good and bad, ethical and unethical medicine-whether the doctor can care, and not simply solve the medical enigma-in light of a changing medical field that prized objectivity and distance from the subject over the old holistic way of listening to a patient in order to understand her malady. In reading Collins within his historical context and against a changing environment within the medical sciences, literary critics discern a gendered doctor-patient relationship and observe a Victorian author's attempts to combat the fears of scientific advancement by using or aligning himself with a proto-feminist perspective.

Performing HeLa: theatrical bodies and living remains.

As a biomedical entity that has been the subject of a plethora of artistic and cultural projects, HeLa, the first immortal human cell line, calls for investigations into the human. Extracted and cultured from the cervical tumour of African-American woman, Henrietta Lacks, at Johns Hopkins Hospital in 1950s' Baltimore, HeLa's robust capacity to grow has ensured its role in numerous medical advances. The first part of this essay synthesises scientific, sociocultural, familial and philosophical perspectives on HeLa, while the second half applies these perspectives to a reading of a theatrical production, HeLa (2013), written and performed internationally by black British artist Adura Onashile. The discussion considers ways in which prevailing cultural narratives that situate Lacks as a victim, dispossessed of bodily agency in life and after death, might delimit productive possibilities for thinking about Lacks as a contributor to biotechnological progress, and about HeLa as a living remain. Lacks' labour in the creation of HeLa may have been unwitting, but her role in biotechnological progress is profound in that it is constitutive. Onashile's solo performance-its deft choreography moving across the subjectivities of patient, physician and family-presents the political fact of black female corporeality as part of its exploration of scientific innovation. The theatrical registers of Onashile's HeLa open up and nuance imaginings of Lacks/HeLa, moving beyond monolithic conceptions of medical research by creatively investigating Lacks' scientific contribution in the midst (and in the wake) of medical exploitation.

Integrating person-centred care and social justice: a model for practice with larger-bodied patients.

Person-centred care (PCC) has been touted as a promising paradigm for improving patients' experiences and outcomes, and the overall therapeutic environment for a range of health conditions, including obesity. While this approach represents an important shift away from a paternalistic and disease-focused paradigm, we argue that PCC must be explicitly informed by a social justice lens to achieve optimal conditions for health and well-being. We suggest that existing studies on PCC for obesity only go so far in achieving social justice goals as they operate within a biomedical model that by default pathologises excess weight and predetermines patients' goals as weight loss and/or management, regardless of patients' embodied experiences and desires. There remains a dearth of empirical research on what social justice-informed PCC looks like in practice with larger patients. This interview study fills a research gap by exploring the perspectives of 1) health practitioners (n=22) who take a critical, social justice-informed approach to weight and 2) larger patients (n=20) served by such practitioners. The research question that informed this paper was: What are the characteristics of social justice-informed PCC that play out in clinical interactions between healthcare practitioners and larger-bodied patients? We identified five themes, namely: 1) Integrating evidence-based practice with compassionate, narrative-based care; 2) Adopting a curious attitude about the patient's world; 3) Centring patients' own wisdom and expertise about their conditions; 4) Working within the constraints of the system to advocate for patients to receive equitable care; 5) Collaborating across professions and with community services to address the multifaceted nature of patient health. The findings illustrate that despite participants' diverse perspectives around weight and health, they shared a commitment to PCC by upholding patient self-determination and addressing weight stigma alongside other systemic factors that affect patient health outcomes.

Empirical Bioethics and the Health 'Brain-Drain': a qualitative study of the experiential and ethical landscape of compulsory community service for a group of South African doctors.

The health 'brain drain' (HBD) is an issue of significant global bioethical concern, resulting in severe maldistribution of healthcare workers (HCWs) and gross inequities in health service provision. The ethics of the HBD and its possible mitigation strategies are, however, complex and areas of active ongoing bioethical debate. South Africa faces a dire and worsening HBD crisis, and use a mitigation strategy of compulsory community service, or 'comserve', for most HCWs. While there is some literature on HCWs' comserve experiences and the various 'push and pull' factors affecting their migratory decisions, there is a notable gap regarding their personal values, beliefs and ethics regarding the HBD and comserve, which, as this research supports, play a prominent role in migratory decisions. This empirical bioethics research aims to explore this among a group of South African doctors who recently completed comserve, as well as how their experiences affected their situation on the individualist-collectivist continuum. This was done qualitatively using semistructured interviews with 11 participants and analysed using reflexive thematic analysis under a methodology of critical realism. Themes identified were 'Special Duties'; 'Freedom and Autonomy'; 'Justice and Accountability'; and 'The Individualist-Collectivist Continuum'. Participants use a variety of ethical theories to discuss the HBD and oppose or support comserve, which play a significant role in their migratory decisions. Most find the policy to be theoretically ethically justifiable but note that procedures undermine this. There are also several factors that appear to affect participants' position on the individualist-collectivist continuum, with some paradoxical effects on the HBD.

Contributions of Hippocratic medicine and Plato to today's debate over health, social determinants and the authority of biomedicine.

By exploring a competition for authority on health and human nature between Plato and Hippocratic medicine, this paper offers a fresh perspective on an overarching debate today involving health and the role of healthcare in its safeguarding. Economically and politically, healthcare continues to dominate the USA's handling of health, construed biophysically as the absence of disease. Yet, notoriously, in major health outcomes, the USA fares worse than other countries in the Organisation for Economic Co-operation and Development (OECD). Clearly, in giving pre-eminence to healthcare, the USA is doing far less than it could to protect and improve health. Meanwhile, mounting evidence supports the view that health impacts of social determinants besides healthcare (eg, education) surpass healthcare in heft. Circumscribed shifts in the USA's current frame will not suffice: what's needed is a change in its overall template for addressing health. Unless this is widely seen, the sway of biomedicine will likely be reduced slowly, if at all. That biomedicine's role in relation to health is raised increasingly as a question is a sign that its ongoing supremacy is not a forgone conclusion. But making the most of this opportunity requires appreciating that 'How should health's relationship to medicine be conceptualised?' is not the most fundamental query that we need to pose. Through consideration of Hippocratic medicine and Plato, I argue that the most availing answer to this particular question can come only after exploration of three larger questions involving health's status as a human good and its relationship to human flourishing. Exploration of the Greeks is, thus, valuable methodologically. What's more, it supports today's advocacy of 'health promotion', a perspective tying health closely to well-being that has yet to achieve the overall prominence that it warrants.

Listening, learning, caring: exploring assemblages of, ethics of and pathways to care for avoidant restrictive food intake disorder (ARFID).

Care has been theorised in relationship to eating disorders as a central consideration across diagnoses. In the context of avoidant restrictive food intake disorder (ARFID) specifically, there is room to further develop the nuances around layers of care involved in working towards well-being. In this paper, we engage with the stories of 14 caregivers of people with ARFID, exploring their pathways to care (or lack thereof) through the healthcare system in Aotearoa New Zealand. We explore the material, affective and relational aspects of care and care-seeking, engaging with the power and politics of care as it flows through care-seeking assemblages. Using postqualitative methods of analysis, we discuss how while participants were seeking care, they received (or, at times, did not receive) treatment, and unpack how care and treatment are not always synonymous. We work up extracts from parents' stories surrounding their caring for their children and how their actions were, at times, interpreted in ways that made them feel blame and shame rather than care. Participants' stories also offer glimmers of care within a resource-strapped healthcare system, which invite us to consider the potentiality of a relational ethics of care as an assemblage-shifting moment.

Solidarity during the COVID-19 pandemic: evidence from a nine-country interview study in Europe.

Calls for solidarity have been an ubiquitous feature in the response to the COVID-19 pandemic. However, we know little about how people have thought of and practised solidarity in their everyday lives since the beginning of the pandemic. What role does solidarity play in people's lives, how does it relate to COVID-19 public health measures and how has it changed in different phases of the pandemic? Situated within the medical humanities at the intersection of philosophy, bioethics, social sciences and policy studies, this article explores how the practice-based understanding of solidarity formulated by Prainsack and Buyx helps shed light on these questions. Drawing on 643 qualitative interviews carried out in two phases (April-May 2020 and October 2020) in nine European countries (Austria, Belgium, France, Germany, Ireland, Italy, The Netherlands, German-speaking Switzerland and the UK), the data show that interpersonal acts of solidarity are important, but that they are not sustainable without consistent support at the institutional level. As the pandemic progressed, respondents expressed a longing for more institutionalised forms of solidarity. We argue that the medical humanities have much to gain from directing their attention to individual health issues, and to collective experiences of health or illness. The analysis of experiences through a collective lens such as solidarity offers unique insights to understandings of the individual and the collective. We propose three essential advances for research in the medical humanities that can help uncover collective experiences of disease and health crises: (1) an empirical and practice-oriented approach alongside more normative approaches; (2) the confidence to make recommendations for practice and policymaking and (3) the pursuit of cross-national and multidisciplinary research collaborations.

White supremacy culture and the assimilation trauma of medical training: ungaslighting the physician burnout discourse.

The physician burnout discourse emphasises organisational challenges and personal well-being as primary points of intervention. However, these foci have minimally impacted this worsening public health crisis by failing to address the primary sources of harm: oppression. Organised medicine's whiteness, developed and sustained since the nineteenth century, has moulded training and clinical practice, favouring those who embody its oppressive ideals while punishing those who do not. Here, we reframe physician burnout as the trauma resulting from the forced assimilation into whiteness and the white supremacy culture embedded in medical training's hidden curriculum. We argue that 'ungaslighting' the physician burnout discourse requires exposing the history giving rise to medicine's whiteness and related white supremacy culture, rejecting discourses obscuring their harm, and using bold and radical frameworks to reimagine and transform medical training and practice into a reflective, healing process.

Finding more constructive ways forward in the debate over vaccines with increased disability cultural competence.

The aim of this article is to study the discursive construction of disability that takes place in the vaccine-autism controversy from the 1990s to 2000s, and an attempt to develop a more holistic framework to understand vaccine decisions and their motivations. It is argued that the debate over vaccines produces knowledge and meanings about disability, and that the vaccine-autism controversy is kept alive largely because of how it reproduces stigmatising accounts of disability and autism. The suggestion is that if the stigmatising elements of disability were removed in the debate over vaccines, there would be no controversy to keep alive in the broader vaccine debate. Hence, this article is an attempt to increase disability cultural competence in the media and among health authorities and health professionals and therethrough broaden the shared understanding of what it means to be or become disabled. By investigating the driving forces for past vaccine controversies, the goal is to find more constructive ways forward in present day and future debates over vaccines.

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.

In good hands: the phenomenological significance of human touch for nursing practices.

Prevailing understandings of the nurse's touch tend to be focused on its consoling, instrumental and communicative utility. What seems to be missing is an exploration of the ethical and existential significance of the nurse's touch. As an aspect of nearly every human experience, touch has a depth and breadth of meanings that are hard to compass. We experience the world through our bodies, feeling our way through our lives. In the nurse's world, touching contact with the person in care is often considered to be a fundamental gesture, inherent to nursing practices. Still, touch is often hidden, subsumed by the tasks of nursing themselves. In order to explore the meaningfulness of the nurse's touch, I start with considering the sense of touch itself, exploring possibilities of the nurse's touch. The experience of the nurse's touch is investigated further through phenomenological reflection on descriptive accounts of the nurse's touch from poetry, fictional prose, neonatal nurse interviews, as well as scholarly and personal accounts. These examples show insights into the nurse's touch as a site for an ethical encounter.