The relationship between love/care and justice was one of the key tensions from which care ethics originated; to this very day it is subject of debate between various streams of thought within care ethics. With some exceptions most approaches have in common the belief that care and justice are mutually exclusive concepts, or at least as so different that their application is situated on different levels. Hence, both are complementary, but distinct, so that there is no real interaction. This paper (...) aims to investigate whether, and if so, how, a deeper understanding of Ricoeur’s thoughts on this matter enriches the relationship between care and justice with respect to care ethics. This connection suggests itself from Ricoeur’s interpretation of the relationship as a dialectical one in which the logic of superabundance and the logic of equivalence meet. Care enables people to see the face and individuality of the one, ‘le chacun,’ within the anonymous structures of justice that tend to reduce all human beings to the anonymous each, ‘le on’; justice in its turn is the precondition for love to become incarnated and made real. What may this view—of care and justice standing in close connection, in which they correct and strengthen each other—add to the understanding of concrete practices of care? (shrink)

The passage from a posture of clinician to that of clinician–bioethicist poses significant challenges for health professionals, most notably with regards to theoretical or epistemological views of complex ethical impasses encountered in clinical settings. Apprehending these situations from the only clinical perspective of the nurse or the doctor, for example, can be very unproductive to help solve this kind of situation and certainly poses great limits to the role of the clinician–bioethicist. Drawing on my own experience as a former nurse (...) who, following graduate studies in bioethics has begun providing ethics consultation services, I argue that clinicians must undergo an epistemological transformation in order to become clinician–bioethicists. A source of inspiration or framework for would-be clinician–bioethicists is, I suggest, the Petite éthique developed by the contemporary French philosopher Paul Ricoeur. Specifically, clinician–bioethicists should develop specific core ethical competencies (in line with the conclusions of the American Society for Bioethics and Humanities (Core competencies for health care ethics consultation, 1998); namely: savoir or knowing, savoir faire or knowing how to do, and savoir être or knowing how to be. (shrink)

As an ethicist trained in narrative, I wondered what I could offer Dr. Darcy at this point, two weeks after the events he described. And what might I have offered those involved if they had called an ethics consult at the time? One of this physician's implicit questions was, “How might this have unfolded in a better way?”When difficult choices must be made, how can a narrative approach help? A narrativist focuses less on principles, rules, and law than would a (...) philosopher or a lawyer. This is not to say that we ignore the law or are unaware of bioethical principles. But where do we go from there? Narrative offers a mode of engagement that asks different kinds of questions than those that law or philosophy might ask about moral agency, context, and values. (shrink)

BackgroundThe overwhelming scarcity of organs within renal transplantation forces researchers and transplantation teams to seek new ways to increase efficacy. One of the possibilities is the use of personalized medicine, an approach based on quantifiable and scientific factors that determine the global immunological risk of rejection for each patient. Although this approach can improve the efficacy of transplantations, it also poses a number of ethical questions.MethodsThe qualitative research involved 22 semi-structured interviews with nephrologists involved in renal transplantation, with the goal (...) of determining the professionals' views about calculating the global immunological risk and the attendant ethical issues.ResultsThe results demonstrate a general acceptance of this approach amongst the participants in the study. Knowledge of each patient's immunological risk could improve treatment and the post-graft follow-up. On the other hand, the possibility that patients might be excluded from transplantation poses a significant ethical issue. This approach is not seen as something entirely new, given the fact that medicine is increasingly scientific and evidence-based. Although renal transplantation incorporates scientific data, these physicians believe that there should always be a place for clinical judgment and the physician-patient relationship.ConclusionsThe participants see the benefits of including the calculation of the global immunological risk within transplantation. Such data, being more precise and rigorous, could be of help in their clinical work. However, in spite of the use of such scientific data, a place must be retained for the clinical judgment that allows a physician to make decisions based on medical data, professional expertise and knowledge of the patient. To act in the best interests of the patient is key to whether the calculation of the global immunological risk is employed. (shrink)

Genetic predispositions often concern not only individual persons, but also other family members. Advances in the development of genetic tests lead to a growing number of genetic diagnoses in medical practice and to an increasing importance of genetic counseling. In the present article, a number of ethical foundations and preconditions for this issue are discussed. Four different models for the handling of genetic information are presented and analyzed including a discussion of practical implications. The different models’ ranges of content reach (...) from a strictly autonomous position over self-governed arrangements in the practice of genetic counseling up to the involvement of official bodies and committees. The different models show a number of elements which seem to be very useful for the handling of genetic data in families from an ethical perspective. In contrast, the limitations of the standard medical attempt regarding confidentiality and personal autonomy in the context of genetic information in the family are described. Finally, recommendations for further ethical research and the development of genetic counseling in families are given. (shrink)

Calls are increasing for American health care to be organized as a learning health care system, defined by the Institute of Medicine as a health care system “in which knowledge generation is so embedded into the core of the practice of medicine that it is a natural outgrowth and product of the healthcare delivery process and leads to continual improvement in care.” We applaud this conception, and in this paper, we put forward a new ethics framework for it. No such (...) framework has previously been articulated. The goals of our framework are twofold: to support the transformation to a learning health care system and to help ensure that learning activities carried out within such a system are conducted in an ethically acceptable fashion. (shrink)

Once upon a time, medicine dismissed narrative as unimportant and uninteresting. Then, in the late 1980s, physicians and scholars became interested in how the study of narrative could enhance our understanding of illness and health care, and the field that came to be known as “narrative medicine” developed. Some of this scholarly activity focused on the idea of narrative ethics.After a flurry of activity around the turn of the twenty‐first century, narrative ethics seemed to stall. The general interest in narrative (...) in medicine continued but with few new ideas on how one might use narrative toward ethical ends. In the last few years, however, forward momentum has returned. The timing seems appropriate, therefore, for a “state of the field” report of sorts. (shrink)

The last twenty-five years of published literature and curriculum development in bioethics suggest that the field enjoys a successful and stable marriage to philosophical ethical theory. However, the next twenty-five years could be very different. I believe the marriage is troubled. Divorce is conceivable and perhaps likely. The most philosophical parts of bioethics may retreat to philosophy departments, while bioethics continues on its current course toward a more interdisciplinary and practical field.I make no presumption that bioethics is integrally linked to (...) philosophical ethical theory. Indeed, I assume that the connection is contingent and fragile. Many individuals in law, theological ethics, political theory, the social and behavioral sciences, and the health professions carefully address mainstream issues of bioethics without finding ethical theory essential or breathtakingly attractive. This is not surprising. Moral philosophers have traditionally formulated theories of the right, the good, and the virtuous in the most general terms. (shrink)

This article begins with some preliminary remarks about the general features and basic varieties of reflective equilibrium in moral reflection. It then considers a couple of preliminary doubts about this method. One of these doubts claims that the most plausible interpretation of RE is so comprehensive that it risks paralyzing our thinking, while the other claims that this same version of RE is insufficiently determinate in practical contexts and will thus fail to be sufficiently action-guiding. The article then explicates the (...) sense in which RE qualifies as a coherence theory of justification, and considers several objections to RE that flow from its reliance on the putative connection between coherence and moral justification. (shrink)

Genomic research—including whole genome sequencing and whole exome sequencing—has a growing presence in contemporary biomedical investigation. The capacity of sequencing techniques to generate results that go beyond the primary aims of the research—historically referred to as “incidental findings”—has generated considerable discussion as to how this information should be handled—that is, whether incidental results should be returned, and if so, which ones.Federal regulations governing most human subjects research in the United States require the disclosure of “the procedures to be followed” in (...) the research as part of the informed consent process. It seems reasonable to assume—and indeed, many commentators have concluded—that genomic investigators will be expected to inform participants about, among other procedures, the prospect that incidental findings will become available and the mechanisms for dealing with them. Investigators, most of whom will not have dealt with these issues before, will face considerable challenges in framing meaningful disclosures for research participants.To help in this task, we undertook to identify the elements that should be included in the informed consent process related to incidental findings. We did this by surveying a large number of genomic researchers (n = 241) and by conducting in‐depth interviews with a smaller number of researchers (n = 28) and genomic research participants (n = 20). Based on these findings, it seems clear to us that routine approaches to informed consent are not likely to be effective in genomic research in which the prospect of incidental findings exists. Ensuring that participants’ decisions are informed and meaningful will require innovative approaches to dealing with the consent issue. We have identified four prototypical models of a consent process for return of incidental findings. (shrink)

The director and founding member of the Houston Galveston Institute documents the emergence of postmodern narrative therapy and shows how linguistics and social discourse influence the changing culture of psychotherapy. Anderson shows how the therapist can empower the patient through the use of narrative and discourse, thereby creating a collaborative environment.

In At the Will of the Body , Arthur Frank told the story of his own illnesses, heart attack and cancer. That book ended by describing the existence of a "remission society," whose members all live with some form of illness or disability. The Wounded Storyteller is their collective portrait. Ill people are more than victims of disease or patients of medicine they are wounded storytellers. People tell stories to make sense of their suffering when they turn their diseases into (...) stories, they find healing. Drawing on the work of authors such as Oliver Sacks, Anatole Broyard, Norman Cousins, and Audre Lorde, as well as from people he met during the years he spent among different illness groups, Frank recounts a stirring collection of illness stories, ranging from the well-known--Gilda Radner's battle with ovarian cancer--to the private testimonials of people with cancer, chronic fatigue syndrome, and disabilties. Their stories are more than accounts of personal suffering: they abound with moral choices and point to a social ethic. Frank identifies three basic narratives of illness in restitution, chaos, and quest. Restitution narratives anticipate getting well again and give prominence to the technology of cure. In chaos narratives, illness seems to stretch on forever, with no respite or redeeming insights. Quest narratives are about finding that insight as illness is transformed into a means for the ill person to become someone new. (shrink)