Medical decisionmaking would be a messier but better thing if it honored what is morally valuable about patients' families. The concerns of intimates have a legitimate call upon us even when we are ill.

Contra those bioethicists who think that their cases are based on “real” events and thus not motivated by any particular ethical theory, Chambers explores how case narratives are constructed and thus the extent to which they are driven by particular theories.

Recently, bioethics has become interested in engaging with narrative, but in this engagement, narrative is usually viewed as a mere helpmate to philosophy. In this precis to his book The Fiction of Bioethics, Tod Chambers argues that narrative theory should not be simply a helpful addition to medical ethics but instead should be thought of as being as vital and important to the discipline as moral theory itself. The reason we need to rethink the relationship of medical ethics to narrative (...) is that ethicists test their ideas by applying them to cases, and cases are a narrative genre. Recognizing the importance that cases have for the way medical ethicists do ethics is essential in order to appreciate the field as a form of applied philosophy. Like other forms of representation, narrative has distinct and defining features, which ethicists, in order to understand the data of their field, must learn to recognize and differentiate. Ethicists need to attend to the way decisions about the discourse of a narrative influences the kind of moral theories judged relevant to it. The author briefly examines six features of narrative discourse that rhetorically condition the way we understand medical ethics cases: filter, reportability, closure, characters, chronotope, and gender. (shrink)

The world of disability theory is currently divided between those who insist it reflects a physical fact affecting life quality and those who believe disability is defined by social prejudice. Despite a dialogue spanning bioethical, medical and social scientific literatures the differences between opposing views remains persistent. The result is similar to a figure-ground paradox in which one can see only part of a picture at any moment. This paper attempts to find areas of commonality between the opposing camps, and (...) thus to rearrange the figures of the paradox at a fundamental level. The purpose is first to identify areas in which common ground can be achieved, and secondarily, to clarify the areas in which disagreement continues. While a general and unified theory of physical difference/disability is beyond the scope of this paper the result may advance that general goal. (shrink)

This monograph consists of five parts: (1) introductory material including a conference overview; (2) papers presented at an international symposium on the topic of ethical issues in disability and rehabilitation as a section of the Annual Conference of the Society for Disability Studies; (3) responses to the symposium, prepared by four of the participants; (4) selected additional papers which offer views from perspectives or cultures not represented at the Denver conference; and (5) an annotated international bibliography. Representatives from 10 countries (...) discussed ethical issues and decision making in disability and rehabilitation. Conference papers include: "Genetic Engineering--The New Eugenics? Evolving Medical Attitudes towards the Quality of Life" (Hugh Gallagher);"Description of the Decision-Making Project" (Daryl Evans); "Treatment and Nontreatment Decisions with Respect to Extremely Premature, Very Low Birthweight Infants (500-750g)" (Ernle Young); "Allocation of Resources and Distributive Justice" (John Mather); "Quality Assurance as an Aid to Ethical Decision Making in Disability Management: Lessons from Recent Ethical Issues Involving Disadvantaged Groups in New Zealand" (Peter Gow); "Disability and Ethical Issues: A Point of View from the Netherlands" (Yolan Koster-Dreese); "Who Shall Live or How Shall They Live? Consumer and Professional Perspectives on Treatment/Non-Treatment Decisions" (Joseph Kaufert and Patricia Kaufert); and "Debates across Social Movements on Reproductive Technologies, Genetic Engineering, and Eugenics" (Theresia Degener). Conference commentaries include: "The Meeting of Disability and Bioethics: A Beginning Rapprochement" (Adrienne Asch); "A Plea for More Dialogue: Commentary on Ethics Conference" (Robert Slater); "Healing Our Wounds" (Martha Lentz Walker); "Theories and Values: Ethics and Contrasting Perspectives on Disability" (Harlan Hahn); and "Current Example of Ethical Dilemma" (Susan Lacetti). Selected additional papers include: "High-tech Medicine Is Basic Care" (Frederick Abrams); "Prevention of Disabilities as a Medical Question" (G. Schioler); "The Ethics of Disability Prevention: A Parent's Point of View" (Mrs. J. Baker); "A Reference Matrix for Issues of Life and Personhood" (Mike Miles); "Nazi Scientists and Ethics of Today" (Isabel Wilkerson); "Ethical and Policy Issues in Rehabilitation Medicine (Hastings Center Report)" (Arthur Caplan et al.); and "Differing Approaches to Prevention of Disability and Treatment of Impaired Infants Creates Controversies Worldwide" (Barbara Duncan). (JDD). (shrink)