In this paper, I look at several examples that demonstrate what I see as a troubling tendency in much of mainstream bioethics to discount the views of disabled people. Following feminist political theorists who argue in favour of a stance of humility and sensitive inclusion for people who have been marginalized, I recommend that bioethicists adopt a presumption in favour of believing rather than discounting the claims of disabled people. By taking their claims at face value and engaging with disabled (...) people in open dialogue over impairment and disadvantage, bioethicists may take to heart an important lesson about human fragility and resilience. (shrink)

Anthropologists and sociologists offer numerous critiques of bioethics. Social scientists criticize bioethicists for their arm-chair philosophizing and socially ungrounded pontificating, offering philosophical abstractions in response to particular instances of suffering, making all-encompassing universalistic claims that fail to acknowledge cultural differences, fostering individualism and neglecting the importance of families and communities, and insinuating themselves within the “belly” of biomedicine. Although numerous aspects of bioethics warrant critique and reform, all too frequently social scientists offer ungrounded, exaggerated criticisms of bioethics. Anthropological and sociological (...) critiques of bioethics are hampered by the tendency to equate bioethics with clinical ethics and moral theory in bioethics with principlist bioethics. Also, social scientists neglect the role of bioethicists in addressing organizational ethics and other “macro-social” concerns. If anthropologists and sociologists want to provide informed critiques of bioethics they need to draw upon research methods from their own fields and develop richer, more informed analyses of what bioethicists say and do in particular social settings. (shrink)

Recent criticism of the role of respect for autonomy in bioethics has focused on that principle's status as ‘dogma’ or ‘ideology’. I suggest that lying beneath many applications of respect for autonomy in medical ethics are some influential dogmas — propositions accepted, not as explicit premises or as a consequence of reasoned argument, but simply because moral problems are so frequently framed in such terms. Furthermore, I will argue that rejecting these dogmas is vital to secure and protect an autonomy (...) worthy of respect. The concept of autonomy that is widely applied in clinical ethics emphasises decision-making competence, at the expense of considering the authenticity of those decisions. Respect for such autonomy is interpreted in largely synchronic and individual terms — concerned with the isolated decisions of individual agents — and thus neglects the diachronic and social dimensions of many moral dilemmas arising in the health care context. I will examine how these unwritten rules lead to an impoverished understanding of respect and a systematic neglect in bioethics of certain kinds of ethical consideration, and draw on insights from feminist and communitarian work on autonomy to sketch an alternative approach to understanding respect, modelled on the norms of respectful conversation — a respect that is firstly concerned with engaging with the another as a potential giver and bearer or reasons, and working with them to promote both individual and social flourishing. (shrink)

Throughout the development of an "ethic of care" different from an "ethic of justice," the relationship between the two has been problematic. Are they theories between which one must choose? Are they complementary? Are they domain-specific? In support of my view that neither is adequate by itself, I here examine the private domain of care of the dying by intimates, and find there important issues both of care and of justice.

Most work addressing clinical workers' professional responsibilities concerns the norms of conduct within established professional–patient relationships, but such responsibilities may extend beyond the clinical context. We explore health workers' professional responsibilities in such “informal” encounters through the example of a doctor witnessing the misdiagnosis and mistreatment of a serious long-term condition in a television documentary, arguing that neither internalist approaches to professional responsibility nor externalist ones provide sufficiently clear guidance in such situations. We propose that a mix of both approaches, (...) emphasizing the noncomplacency and practical wisdom of virtue ethics, but grounding the normative authority of virtue in an external source, is able to engage with the health worker's responsibilities in such situations to the individual, the health care system, and the population at large. (shrink)

It is time for the noon conference. Your job is to impart a career-changing experience in ethics to a group of students and interns gathered from four different schools with varying curriculums in ethics. They have just finished 1½ h of didactic sessions and lunch. One third of them were on call last night. Your first job is to keep them awake. The authors argue that this “tragic case” approach to ethics education is of limited value because it limits understanding (...) of moral problems to dilemmas; negates the moral agency of the student; encourages solutions that are merely intellectual; and suggests that ethical encounters are a matter for experts. The authors propose an alternative that focuses on three issues: the provider-patient relationship, the relationships between providers in the everyday world of health work and, the social position of healthcare providers in society. In this approach, teachers are not experts but more like guides on a journey who help students to learn that much of ethical practice comprises living through difficult situations of caring for vulnerable others and who help students to navigate some of these difficulties. (shrink)

This paper examines the concept of ‘openness with patients’ from the stand-point of the limitations of biomedical ethics. Initially we review contemporary critiques of bioethics and, in particular, of principlism; we relate how other; somewhat neglected, forms of medical ethics can yield useful information and provide moral guidance. The main section of the paper then shows how a bioethical approach to openness misses the social context in our example, the viewpoints of patients; we present some of the increasing wealth of (...) research evidence which points towards patients wanting more information and a greater degree of openness. (shrink)

This paper examines the concept of ‘openness with patients’ from the stand-point of the limitations of biomedical ethics. Initially we review contemporary critiques of bioethics and, in particular, of principlism; we relate how other; somewhat neglected, forms of medical ethics can yield useful information and provide moral guidance.The main section of the paper then shows how a bioethical approach to openness misses the social context in our example, the viewpoints of patients; we present some of the increasing wealth of research (...) evidence which points towards patients wanting more information and a greater degree of openness.Finally we put forward that a principlist’s objection to active encouragement of openness might be based on the risk of infringing upon the ‘right not to know’. We reject this by arguing how rights can be trumped. (shrink)

Around the world the wealthy can get their lives extended while the poorget little basic medical help. Over the same years that the field ofbioethics has prospered and expanded, this disparity has increased.Reasons for the failure of bioethics to successfully address thishealth/wealth issue include its identification with the cognitiveand social authority of medicine; its gatekeeping behavior;its funding sources; its questionable use of ``principlism'' andits emphasis on crises and dilemmas to the neglect of ``housekeeping''issues. The work of most women in bioethics (...) rarely addresses thehealth/wealth issue; if it does, their work may be ignored, aswere the recommendations of Canadian feminists working under governmentgrants. To achieve equity in health care, the structure of both medicineand bioethics needs to be changed. Yet, since bioethicists generallyhave accepted the status quo, this seems unlikely to happen. (shrink)