Este artículo tiene como objetivo sistematizar los avances del enfoque narrativo en bioética con el fin de proponer una fundamentación de las prácticas de salud intercultural que facilite su complementariedad con el conjunto del sistema sanitario. Para ello revisará críticamente los fundamentos de la bioética narrativa y su vinculación con las corrientes hermenéuticas en las éticas aplicadas y con el movimiento de la medicina narrativa. A la vez relacionará el enfoque narrativo con el paradigma intercultural en salud, en orden a (...) evaluar sus capacidades de complementación y articulación con la sabiduría ancestral mapuche, desde su raigambre y especificidad. Finalmente informará sobre las posibilidades de desarrollo de una bioética narrativa en clave intercultural, adecuada a las prácticas en el ámbito sanitario que se basan en el acervo de la sabiduría ancestral mapuche. This article aims to systematize the progress of the narrative approach in bioethics in order to propose a groundwork for intercultural health practices. Seeks propose a basis for intercultural health practices that facilitate the complementarity of the health system through the recovery of ancestral Mapuche Worldview, their roots and specificity. It will critically review the basics of narrative bioethics and its relationship with the hermeneutical currents in applied ethics and the movement of Narrative Medicine. At the same time relates the narrative approach to the intercultural paradigm in health, in order to assess its capabilities complementation and articulation. And finally it will report on the possibilities of developing an intercultural key Narrative Bioethics appropriate to the intercultural practices in health care based on the acquis of the Mapuche Ancestral Wisdom. (shrink)

In recent years, there has been a growing interest in finding stronger means of securitising identity against the various risks presented by the mobile globalised world. Biometric technology has featured quite prominently on the policy and security agenda of many countries. It is being promoted as the solution du jour for protecting and managing the uniqueness of identity in order to combat identity theft and fraud, crime and terrorism, illegal work and employment, and to efficiently govern various domains and services (...) including asylum, immigration and social welfare. In this paper, I shall interrogate the ways in which biometrics is about the uniqueness of identity and what kind of identity biometrics is concerned with. I argue that in posing such questions at the outset, we can start delimiting the distinctive bioethical stakes of biometrics beyond the all-too-familiar concerns of privacy, data protection and the like. I take cue mostly from Cavarero’s Arendt-inspired distinction between the “what” and the “who” elements of a person, and from Ricoeur’s distinction between the “idem” and “ipse” versions of identity. By engaging with these philosophical distinctions and concepts, and with particular reference to the example of asylum policy, I seek to examine and emphasise an important ethical issue pertaining to the practice of biometric identification. This issue relates mainly to the paradigmatic shift from the biographical story (which for so long has been the means by which an asylum application is assessed) to bio-digital samples (that are now the basis for managing and controlling the identities of asylum applicants). The purging of identity from its narrative dimension lies at the core of biometric technology’s overzealous aspiration to accuracy, precision and objectivity, and raises one of the most pressing bioethical questions vis-à-vis the realm of identification. (shrink)

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. (shrink)

A commentary on a special report, titled Narrative Ethics: The Role of Stories in Bioethics, that appeared with the January‐February 2014 issue.

Between 1917 and 1935, William Carlos Williams’ poetic style shifted from a focus on color to a verbal grayscale of photorealism. Considering this shift alongside of the historical connection between photography and eugenics raises questions about Williams’ status as a physician during an era when medical discourse was dominated by theories of scientific racism. While one might conclude that Williams move from color to grayscale represents a capitulation to public health anxieties regarding the pathologized bodies of the immigrant poor, I (...) argue that it is precisely through his adoption of black-and-white photorealism that Williams overturns hereditary notions of degeneracy. (shrink)

Narrative bioethics is primarily understood to involve storytelling through the use of literature. This article suggests that other forms of media are necessary to convey stories of an ethical nature to an audience broader than one being trained as medical professionals. “Documentary bioethics” is a manner to present and interpret stories of an ethical nature using forms of popular electronic media in a reality-based documentary style to society at large, specifically Generations X and Y.

The increasingly foreshortening of bioethics known as narrative and even literary bioethics is analyzed in article. This analysis is realized on the material of Rudyard Kipling’s story «The miracle of Purun Bhagat». Deconstruction in its ethical aspect comes out in this case as method of the overcoming of logocentrism and becomes radicalization of ethics. The talk is about consideration of bioethics not simply as the science of survival but as radical ethics of the salvation of life. (...) The text of the story is interpreted as pharrmacon, remedy, sure remedy for human consciousness, society and nature. The result of the analysis is the idea of the consideration of conservative bioethics as radical ethics of salvation and science about spiritual-moral essence of human. This essence is consciousness, which is always moral consciousness in contradiction to intellect deprivated of moral dimension and leading humankind on the way of catastrophic progress to transhumanistic, posthuman future. (shrink)

Despite having paved the way for face, womb and penis transplants, hand transplantation today remains a small hybrid of reconstructive microsurgery and transplant immunology. An exceptionally limited patient population internationally complicates medical researchers’ efforts to parse outcomes “objectively.” Presumed functional and psychosocial benefits of gaining a transplant hand must be weighed in both patient decisions and bioethical discussions against the difficulty of adhering to post-transplant medications, the physical demands of hand transplant recovery on the patient, and the serious long-term health (...) risks of immunosuppressant drugs. This paper relates five narratives of hand transplantation drawn from an oral history project to show how narrative methods can and should inform ethical evaluations and the clinical process of hand transplantation. The interviews with patients and their partners analyzed here lead us to suggest that qualitative accounts of patient experiences should be used to complement clinical case studies reported in medical journals and to help develop instruments to assess outcomes more systematically. (shrink)

The Hastings Center addresses fundamental ethical issues in the areas of health, medicine, and the environment as they affect individuals, communities, and societies. With a small staff of senior researchers at the Center and drawing upon national and international experts, The Hastings Center pursues interdisciplinary research and education that includes both theory and practice. Founded in 1969 by philosopher Daniel Callahan and psychoanalyst Willard Gaylin, The Hastings Center is the oldest independent, nonpartisan, interdisciplinary research institute of its kind in the (...) world. From its earliest days The Hastings Center has understood that the moral problems arising from rapid advances in medicine and biology are set within a broad intellectual and social context. The Center's collaborations with policy-makers, in the private as well as the public sphere, assist them in analyzing the ethical dimensions of their work. (shrink)

Clinical assessments of mental capacity have long been guided by four basic cognitive criteria (understanding, appreciation, ability to reason, communication of decision), distilled directly from widespread legal precedent in common law cases of informed consent and refusal. This article will challenge the sufficiency of these legal criteria at the bedside on the assertion that clinicians and bioethicists who evaluate decisional capacity face questions far deeper than the mere presence or absence of a patient’s informed consent. It will then present an (...) additional standard beyond the existing cognitive criteria – to be called the Narrative Coherence Standard – that may begin to bridge the gap between the existing legal standards and higher-order bioethical priorities. This standard will be treated with a philosophical argument for its use, as well as a detailed exploration of its technical components and conceptual underpinnings. (shrink)

The use of psychedelics has recently gained increased interest among bioethicists, as the articles published in this journal attest. Some of the recent scholarship suggests that psychedelic experie...

Several months ago, I was walking down the hallway outside our medical school faculty offices and a colleague stopped me to ask a question. He phrased his query in the context of a case that raised ethical issues for him, and he asked me to respond. I obligingly offered my opinion given the details he presented, ending my comments with the phrase, To this he kindly shot back, To be honest, this question caught me off guard. Though his particular dilemma (...) was relatively well-trod territory for many bioethicists, I had done little research on the issue and could not immediately render a response to his latter query. (shrink)

Narratives have always played a prominent role in both bioethics and medicine; the fields have attracted much storytelling, ranging from great literature to humbler stories of sickness and personal histories. And all bioethicists work with cases--from court cases that shape policy matters to case studies that chronicle sickness. But how useful are these various narratives for sorting out moral matters? What kind of ethical work can stories do--and what are the limits to this work? The new essays in Stories (...) and Their Limits offer insightful reflections on the relationship between narratives and ethics. (shrink)

Bioethics, and indeed much ethicalwriting generally, makes its point throughnarratives. The religious parable no less thanthe medical teaching case uses a simple storyto describe appropriate action or theapplication of a critical principle. Whilepowerful, the telling story has limits. In thispaper the authors describe a simple teachingcase on ``end-of-life'' decision making that wasill received by its audience. The authors ill-receivedexample, involving the disconnection ofventilation in a patient with ALS (Lou Gherig'sDisease) was critiqued by audience members withlong-term experience as ventilation users. (...) Inthis case, the supposedly simple narrative ofthe presenters conflicted with the lifehistories of the audience. The lessons of thisstory, and the conflict that resulted, speakcritically to the limits of simple teachingcases as well as the strengths of narrativeanalysis as a tool for the exploration ofbioethical case histories. (shrink)

Children with innate variations of sex characteristics (also termed differences of sex development or intersex traits) are routinely subjected to medical interventions that aim to make their bodies appear or function more typically female or male. Many such interventions lack clear evidence of benefit, they have been challenged for thirty years, and they are now understood to violate children’s rights to bodily autonomy and bodily integrity. In this paper I argue that these persist in part due to epistemic injustices and (...) biomedical authority. Epistemic injustices include limited disclosure of current practices, the systemic marginalisation of community voices and psychosocial professionals, and attempts to discredit or misrepresent testimony. Bioethics has largely failed to change medical practice, and sometimes plays a role in perpetuating epistemic injustices. I find that the development of an intersex movement provides opportunities for epistemic justice and liberation by engaging with other disciplines and promoting oversight of medical decision-making. The paper draws particularly on Australian sources, including internationally influential ethical principles. (shrink)

Given that biases can distort bioethics work, it has received surprisingly little and fragmented attention compared to in other fields of research. This article provides an overview of potentially relevant biases in bioethics, such as cognitive biases, affective biases, imperatives, and moral biases. Special attention is given to moral biases, which are discussed in terms of (1) Framings, (2) Moral theory bias, (3) Analysis bias, (4) Argumentation bias, and (5) Decision bias. While the overview is not exhaustive and (...) the taxonomy by no means is absolute, it provides initial guidance with respect to assessing the relevance of various biases for specific kinds of bioethics work. One reason why we should identify and address biases in bioethics is that it can help us assess and improve the quality of bioethics work. (shrink)

A commentary on a special report, titled Narrative Ethics: The Role of Stories in Bioethics, that appeared with the January‐February 2014 issue.

Bioethics can be considered as a topic, an academic discipline, a field of study, an enterprise in persuasion. The historical specificity of the forms bioethics takes is significant, and raises questions about some of these approaches. Bioethics can also be considered as a governance practice, with distinctive institutions and structures. The forms this practice takes are also to a degree country specific, as the paper illustrates by drawing on the author’s UK experience. However, the UNESCO Universal Declaration (...) on Bioethics can provide a starting point for comparisons provided that this does not exclude sensitivity to the socio-political context. Bioethics governance practices are explained by various legitimating narratives. These include response to scandal, the need to restrain irresponsible science, the accommodation of pluralist views, and the resistance to the relativist idea that all opinions count equally in bioethics. Each approach raises interesting questions and shows that bioethics should be studied as a governance practice as a complement to other approaches. (shrink)

Introduction -- Bioethics as scholarship -- Language, narrative and rhetoric in bioethics -- Euthanasia, the Nazi analogy and the slippery slope -- Heredity, genes and reproductive politics -- Human experimentation -- Thalidomide.

Bioethics at the Movies explores the ways in which popular films engage basic bioethical concepts and concerns. Twenty philosophically grounded essays use cinematic tools such as character and plot development, scene-setting, and narrative-framing to demonstrate a range of principles and topics in contemporary medical ethics. The first section plumbs popular and bioethical thought on birth, abortion, genetic selection, and personhood through several films, including The Cider House Rules, Citizen Ruth, Gattaca, and I, Robot. In the second section, the (...) contributors examine medical practice and troubling questions about the quality and commodification of life by way of Dirty Pretty Things, Eternal Sunshine of the Spotless Mind, and other movies. The third section's essays use Million Dollar Baby, Critical Care, Big Fish, and Soylent Green to show how the medical profession and society at large view issues related to aging, death, and dying. A final section makes use of Extreme Measures and select Spanish and Japanese films to discuss two foundational matters in bioethics: the role of theories and principles in medicine and the importance of cultural context in devising care. Structured to mirror bioethics and cinema classes, this innovative work includes end-of-chapter questions for further consideration and contributions from scholars from the United States, Canada, the United Kingdom, Israel, Spain, and Australia. Contributors: Robert Arp, Ph.D., Michael C. Brannigan, Ph.D., Matthew Burstein, Ph.D., Antonio Casado da Rocha, Ph.D., Stephen Coleman, Ph.D., Jason T. Eberl, Ph.D., Paul J. Ford, Ph.D., Helen Frowe, M.A., Colin Gavaghan, Ph.D., Richard Hanley, Ph.D., Nancy Hansen, Ph.D., Al-Yasha Ilhaam, Ph.D., Troy Jollimore, Ph.D., Amy Kind, Ph.D., Zana Marie Lutfiyya, Ph.D., Terrance McConnell, Ph.D., Andy Miah, Ph.D., Nathan Norbis, Ph.D., Kenneth Richman, Ph.D., Karen D. Schwartz, LL.B., M.A., Sandra Shapshay, Ph.D., Daniel Sperling, LL.M., S.J.D., Becky Cox White, R.N., Ph.D., Clark Wolf, Ph.D. (shrink)

In this short response to Peter Clarke's thorough and interesting tracing of the developments in Richard McCormick's approach to moral questions, I take a perspective external to the concerns of Clarke's paper. I propose to look at the developments in McCormick's approach not so much from the perspective of contemporary Catholic moral theology but from that of the impact on the practices and beliefs of the Catholic community. From that perspective, the really important events in McCormick's theological development are his (...) rejection of the received teaching on contraception and his closely connected embracing of a moral theory that implies that there are no moral absolutes, namely, proportionalism. (shrink)

Empirical research in bioethics has developed rapidly over the past decade, but has largely eschewed the use of technology-driven methodologies. We propose “design bioethics” as an area of conjoined theoretical and methodological innovation in the field, working across bioethics, health sciences and human-centred technological design. We demonstrate the potential of digital tools, particularly purpose-built digital games, to align with theoretical frameworks in bioethics for empirical research, integrating context, narrative and embodiment in moral decision-making. Purpose-built digital (...) tools can engender situated engagement with bioethical questions; can achieve such engagement at scale; and can access groups traditionally under-represented in bioethics research and theory. If developed and used with appropriate rigor, tools motivated by “design bioethics” could offer unique insights into new and familiar normative and empirical issues in the field. (shrink)

What is it like to live with the label “Disability?” NIB editorial staff and narrative symposium editors, Jeffery Bishop and Naomi Sunderland developed a call for stories, which was sent to several list serves, shared with the 1000 Voices Project community and posted on Narrative Inquiry in Bioethics ’ website. The request for personal stories from people who identify with the label “disabled” asked them to: consider how the label “disability” interacts with other aspects of their life (...) in health care settings; does the term “disability” reflect their actual embodied experiences of impairment or does it fail to do justice to their particular experience of impairment; describe the kind of experiences that are possible because of the impairment(s); discuss how the label has affected their “authentic voice”; and many other concepts about what effects the label has on their lives. These authors share deeply personal experiences that will help readers understand their world, challenges, and joys. Thirteen stories are found in the print version of the journal and an additional five supplemental stories are published online only through Project MUSE. The stories are complemented by four commentary articles by Elizabeth R. Schiltz; Lorna Hallahan; Nicole Matthews, Kathleen Ellem, and Lesley Chenoweth; and Jeffery Bishop, Rachelle Barina, and Devan Stahl. These scholars come from the disciplines of law, social work, media studies, medicine, and bioethics from Australia and the United States. Together, the symposium’s storytellers and commentators offer striking and informative insights into the everydayness of living with disabilities. (shrink)

Bioethics case reports generally treat aspects of moral fathomability, characterised and addressed in different ways. This paper reads the case as a textual model of scenarios and draws attention to its structure, narrative shape, linguistic register, and the effects of tone and temporality on reader expectation and responsiveness. Such textual elements of case composition reflect authorial purpose and influence the interpretation, including moral and ethical interpretation, of bioethics cases.

This paper responds to a proposal for an intersectional approach to the clinical encounter between patient and medical provider. We agree that an intersectional framework offers new insights and information in the clinical encounter. Intersectionality involves awareness of the physician-patient dynamic, and understanding the various privileges and disadvantages of all parties involved, at a micro and macroscopic level. Yet, this analysis alone is insufficient to aid in the clinical encounter and risks harm. We worry about a clinician making assumptions about (...) her patient’s race, gender, economic status, and how these influence the patient’s own views of her life and health. We argue that a narrative supplement is a necessary element of intersectional clinical encounters. Prioritizing patient narrative curtails assumptions, builds trust, and improves care. (shrink)

Gene editing in the environment must consider uncertainty about potential benefits and risks for different populations and under different conditions. There are disagreements about the weight and balance of harms and benefits. Deliberative and community‐led approaches offer the opportunity to engage and empower diverse publics to co‐create responses and solutions to controversial policy choices in a manner that is inclusive of diverse perspectives. Stories, understood as situated accounts that reflect a person's life experiences, can enable the articulation of nuanced perspectives, (...) diversify how perspectives are communicated, encourage wider participation, open dominant perspectives to challenge, and invite participants to assess appropriate empathy and precaution in collective positions. An emphasis on storytelling in deliberations on gene editing of organisms emphasizes carefully designed recruitment and facilitation to support hearing from a range of perspectives, including those that present a different set of assumptions than those that may be held by experts or other stakeholders, among these, consideration of how to understand our relationships to nature. (shrink)

Teaching bioethics in the new millennium requires its practitioners to confront a wide area of methodological alternatives. This essay chronicles the author's journey from the principlism of Beauchamp and Childress, through narrative and postmodern bioethics, to a complex feminist critique of postmodern bioethics that emphasizes functional human capabilities and the creation of structures that can facilitate free discussion of those capabilities and how best to realize them. Teaching bioethics concerns not only the acknowledgement of differences (...) but also reminding ourselves of our samenesses. Sustained Habermasian democratic conversations might help us to escape the narrow confines of a postmodern bioethics of moral strangers for a richer world of moral friends. (shrink)

(2001). Making the Things of the World: Narrative Construction and the Project of Bioethics. The American Journal of Bioethics: Vol. 1, No. 1, pp. 59-61.

The development of technologies for gene editing in the wild has the potential to generate tremendous benefit, but also raises important concerns. Using some form of public deliberation to inform decisions about the use of these technologies is appealing, but public deliberation about them will tend to fall back on various forms of heuristics to account for limited personal experience with these technologies. Deliberations are likely to involve narrative reasoning—or reasoning embedded within stories. These are used to help people (...) discuss risks, processes, and fears that are otherwise difficult to convey. In this article, we identify three forms of collective narrative that are particularly relevant to debates about modifying genes in the wild. Our purpose is not to privilege any particular narrative, but to encourage people involved in deliberations to make these narratives transparent. Doing so can help guard against the way some narratives—referred to here as “crafted narratives”—may be manipulated by powerful elites and concentrated economic interests for their own strategic ends. (shrink)

The arrival of the Covid‐19 pandemic in Pakistan necessitated that the Centre of Biomedical Ethics and Culture in Karachi realign its activities to changing realities in the country. As Pakistan's only bioethics center, and with no guidelines available for allocation of scarce medical resources, CBEC developed “Guidelines for Ethical Healthcare Decision‐Making in Pakistan” with input from medical and civil society stakeholders. The CBEC blog connected to the center's bioethics programs for students from Pakistan and Kenya shifted to Covid‐related (...) issues specific to the context of existing social and political realities within these countries. As part of its outreach activities, CBEC initiated a popular Facebook series, #HumansofCovid, as an experience‐sharing platform for health care professionals and members of the public. Narratives received vary from those by frustrated physicians under quarantine to those concerning street vendors left jobless and a transsexual person in whose opinion “social distancing” is not a new phenomenon for their communities. (shrink)

The Covid-19 pandemic necessitated a shift to online teaching of bioethics, a field that relies on discourse and interactive teaching methods. This paper aims to highlight the challenges faced and lessons learned while describing the experience of having to shift to teaching bioethics online to students enrolled in the Postgraduate Diploma in Biomedical Ethics (PGD) and Master of Bioethics programs at the Centre of Biomedical Ethics and Culture (CBEC) in Pakistan. Opinions of students, mainly compromising mid-career healthcare (...) related professionals, were obtained through a survey (n = 13) and an in-depth group discussion via Zoom. Observations from core faculty (n = 7) were recorded through conducting a content analysis of monthly faculty meetings, enhanced by faculty narratives published in the Centre’s bi-annual newsletter. Faculty and students alike expressed unease with the online mode since it minimized chances of interaction with peers and faculty thus negatively affecting learning process. Juggling work responsibilities while taking synchronous online classes proved to be difficult for students particularly for clinicians, with unique issues for women. Faculty faced increased workload due to the necessity for development of innovative teaching methods and new assessment tools in order to maintain the standard of the academic programs. Despite the problems surrounding the online mode, students and faculty also acquired new skills during this period. Overall, there was a clear preference for on-campus learning, however against the backdrop of a pandemic, online mode was considered as the only viable option. (shrink)

Bioethics today has become a subject of wide public concern. Almost every one of its tenets is being seriously questioned and likely to be reformulated. Moreover, the pressure on bioethics continues to mount as the number of moral conflicts that buffet our society increases. What, then, will bioethics look like a decade from now? In the variety of approaches that have been employed in the practice of bioethics, one has dominated in the United States in the (...) last decade and a half. That approach is "principlism", the use of moral principles to address theoretical issues and to resolve conflicts at the bedside. Recently, however, bioethicists and others increasingly have realized the limitations of principlism and are calling for the development of alternative approaches such as phenomenology, hermeneutics, narrative ethics, casuistry, and virtue ethics. This book maps the debate over principlism and the future direction of U.S. bioethics. Part One consists of a sociological description of U.S. bioethics at the beginning of the 1990s, along with a defense of principlism by one of its major proponents. Part Two maps cross-cultural critiques of principlism, while Part Three covers five alternatives to it. Three essays in Part Four - by a bioethicist, a physician, and a theologian - reflect on the future of U.S. bioethics, principlism, and its alternatives. The Afterword emphasizes the place of religion and theological discourse in the alternative approaches and in the future of bioethics. (shrink)