It seems to be a fundamental feature of being human to make meaning out of experiences and events by telling stories. We are born into a web of narratives‐to become a self is, it can seem, to hear others' stories about you and, eventually, to insert yourself into those webs and assert your own story. When we teach ethics illustrated by cases, we tell stories. When children and parents talk about how they came to hospital, what they hoped, how things (...) have gone, what worries them about the decisions we ask them to face, we hear stories. Stories often reveal best the meaning a person attaches to his or her experiences, and stories shape the meaning those experiences will come to have for that person or family as the story is told, retold, and refined. I share the belief of narratologists that most of us are, at our core, storytellers. And I can't help but notice that many of those stories contain moral evaluations, explicitly or implicitly. (shrink)

In this remarkable book Michel Foucault, one of the most influential thinkers of recent times, calls us to look critically at specific historical events in order to uncover new layers of significance.

On one view, limb transplants cross technological frontiers but not ethical ones; the only issues to be resolved concern professional competence, under the assumption of patient autonomy. Given that the benefits of limb transplant do not outweigh the risks, however, the autonomy and rationality of the patient are not necessarily self‐evident. In addition to questions of resource allocation and informed consent, limb, and particularly hand, allograft also raises important issues of personal identity and bodily integrity. We present two linked schemas (...) for exploring ethical issues in limb transplants. The first, relying on conventional concepts in biomedical ethics, asks whether the procedure is research or therapy, whether the costs outweigh the benefits, and whether it should be up to the patient to decide. The second introduces more speculative and theoretically challenging questions, including bodily integrity, the argument from unnaturalness, and the function of the hand in expressing personal identity and intimacy. We conclude that limb transplants are not ruled out a priori, unlike some procedures that are prima facie wrong to perform, such as amputation of healthy limbs to relieve body dysmorphic disorders. However, their legitimacy is not proven by appeals to the interests of scientific research, cost‐benefit, or patient autonomy. (shrink)

This book supports the emerging field of vascularized composite allotransplantation for face and upper-limb transplants by providing a revised, ethically appropriate consent model which takes into account what is actually required of facial and upper extremity transplant recipients. In place of consent as permission-giving, waiver, or autonomous authorization, this book imagines consent as an ongoing mutual commitment, i.e. as covenant consent. The covenant consent model highlights the need for a durable personal relationship between the patient/subject and the care provider/researcher. Such (...) a relationship is crucial given the recovery period of 5 years or more for VCA recipients. The case for covenant consent is made by first examining the field of vascularized composite allotransplantation, the history and present understandings of consent in health care, and the history and use of the covenant concept from its origins through its applications to health care ethics today. This book explains how standard approaches to consent are inadequate in light of the particular features of facial and upper limb transplantation. In contrast, use of the covenant concept creates a consent model that is more appropriate ethically for these very complex surgeries and long-term recoveries. (shrink)

A quiet revolution is occurring in the field of transplantation. Traditionally, transplants have involved solid organs such as the kidney, heart and liver which are transplanted to prevent recipients from dying. Now transplants are being done of the face, hand, uterus, penis and larynx that aim at improving a recipient's quality of life. The shift away from saving lives to seeking to make them better requires a shift in the ethical thinking that has long formed the foundation of organ transplantation. (...) The addition of new forms of transplants requires doctors, patients, regulators and the public to rethink the risk and benefit ratio represented by trade-offs between saving life, extending life and risking the loss of life to achieve improvements in the quality of life. (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)

Biologists frequently draw on ideas and terminology from engineering. Evolutionary systems biology—with its circuits, switches, and signal processing—is no exception. In parallel with the frequent links drawn between biology and engineering, there is ongoing criticism against this cross-fertilization, using the argument that over-simplistic metaphors from engineering are likely to mislead us as engineering is fundamentally different from biology. In this article, we clarify and reconfigure the link between biology and engineering, presenting it in a more favorable light. We do so (...) by, first, arguing that critics operate with a narrow and incorrect notion of how engineering actually works, and of what the reliance on ideas from engineering entails. Second, we diagnose and diffuse one significant source of concern about appeals to engineering, namely that they are inherently and problematically metaphorical. We suggest that there is plenty of fertile ground left for a continued, healthy relationship between engineering and biology. (shrink)

Since the publication of the first edition of Tom Beauchamp and James Childress’s Principles of Biomedical Ethics there has been much debate about what a proper method in medical ethics should look like. The main rival for Beauchamp and Childress’s account, principlism, has consistently been casuistry, an account that recommends argument by analogy from paradigm cases. Admirably, Beauchamp and Childress have modified their own view in successive editions of Principles of Biomedical Ethics in order to address the concerns proponents of (...) casuistry and others have had about principlism. Given these adjustments to their view, some have claimed that principlism and casuistry no longer count as distinct methods. Even so, many still consider these two conceptions of bioethical methodologies as rivals. Both accounts of the relationship between casuistry and principlism are wrong. These two conceptions of methodology in biomedical ethics are significantly different, but the differences are not the ones pointed out by those who still claim that they are distinct positions. In this article, I explain where the real similarities and differences lie between these two views. (shrink)

Norway’s living kidney donation-rate is among the highest in the world ( 36 per million ). According to questionnaire-results, donors enjoy better than average health, presumably due to the strict medical criteria for being allowed to donate and life long medical follow up. However, in recent years international studies have cast doubt on the predominantly positive picture of donors and recipients, particularly regarding psychological aspects of transplantation surgery and donor evalutation. Findings in this study derive from anthropological fieldwork lasting 36 (...) months at three university hospitals in the Oslo-basin. 18 end stage kidney disease patients and their potential donors were recruited opportunistically and interviewed (separately) in three or more semi-structured conversations during the evaluation process and after transplantation. 3 cases are discussed in detail. Notes were transcribed and analysed according to narrative theory. Focus was to explore the content of donors’ and recipients’ pre- and post-transplantation narratives and to examine whether these accounts warrant a need for more comprehensive psychological assessment than is current practice in Norway. Donor- and recipient-narratives are well suited as a tool to improve living kidney donation-decisions. The material indicates a need to offer psychological care to LKD-partners, before and after transplantation. (shrink)

Candidate evaluation for breast implantation presents a more important obstacle to the fulfillment of the normative requirements of informed consent than do the social roles of women or cultural norms governing female beauty. I argue that women's decisions to receive breast implants may indeed be informed, competently made, and substantially voluntary, but that the cultural construction of beauty may undermine women's autonomy by influencing the evaluation of surgical candidates and risk disclosure during informed consent.

This essay focuses on how casuistry can become a useful technique of practical reasoning for the clinical ethicist or ethics consultant. Casuistry is defined, its relationship to rhetorical reasoning and its interpretation of cases, by employing three terms that, while they are not employed by the classical rhetoricians and casuists, conform, in a general way, to the features of their work. Those terms are (1) morphology, (2) taxonomy, (3) kinetics. The morphology of a case reveals the invariant structure of the (...) particular case whatever its contingent features, and also the invariant forms of argument relevant to any case of the same sort: these invariant features can be called topics. Taxonomy situates the instant case in a series of similar cases, allowing the similarities and differences between an instant case and a paradigm case to dictate the moral judgment about the instant case. This judgment is based, not merely on application of an ethical theory or principle, but upon the way in which circumstances and maxims appear in the morphology of the case itself and in comparison with other cases. Kinetics is an understanding of the way in which one case imparts a kind of moral movement to other cases, that is, different and sometimes unprecedented circumstances may move certain marginal or exceptional cases to the level of paradigm cases. In conclusion, casuistry is the exercise of prudential or practical reasoning in recognition of the relationship between maxims, circumstances and topics, as well as the relationship of paradigms to analogous cases. (shrink)

In this paper, changes in identity and selfhood experienced through organ transplantation are analyzed from a phenomenological point of view. The chief examples are heart and face transplants. Similarities and differences between the examples are fleshed out by way of identifying three layers of selfhood in which the procedures have effects: embodied selfhood, self-reflection, and social-narrative identity. Organ transplantation is tied to processes of alienation in the three layers of selfhood, first and foremost a bodily alienation experienced through illness or (...) injury and in going through and recovering from the operation. However, in cases in which the organ in question is taken to harbor the identity of another person, because of its symbolic qualities (the heart) or its expressive qualities (the face), the alienation process may also involve the otherness of another person making itself, at least imaginatively, known. (shrink)

The move to patient-centered medical practice is important for providing relevant and sustainable health care. Narrative medicine, for example, suggests that patients should be involved significantly in diagnosis and treatment. In order to understand the meaning of symptoms and interventions, therefore, physicians must enter the life worlds of patients. But physicians face high patient loads and limited time for extended consultations. In current medical practice, then, is narrative medicine possible? We argue that engaging patient perspectives in the medical visit does (...) not necessarily require a lengthy interview. Instead, a new orientation to this process that emphasizes dialogue between practitioners and patients should be considered. In this new model, the purpose of the visit is to communicate successfully and develop a mutual understanding of illness and care. (shrink)

In this article, we present an analysis of bodily integrity in hand transplants from a phenomenological narrative perspective, while drawing on two contrasting case stories. We consider bodily integrity as the subjective bodily experience of wholeness which, instead of referring to actual bodily intactness, involves a positive identification with one’s physical body. Bodily mutilations, such as the loss of a hand, may severely affect one’s bodily integrity. A possible restoration of one’s experience of wholeness requires a process of re-identification. Medical (...) interventions, such as a hand transplant, may improve the possibility of a successful re-identification. However, since the experience of wholeness does not refer simply to physical intactness or impairment, the choice for medical intervention should not be based merely upon the degree of physical mutilation. It should also be based upon the degree to which a person fails in re-identifying with his or her mutilated body. We argue that a normalizing operation is only ethically justifiable if the intervention enables the person to be the body he or she has. (shrink)