During the education of scientists at the university level the students become more and more specialized. The specialization of the students is a consequence of the scientific research becoming specialized as well. In the interdisciplinary field of nanoscience the importance of specialization is also emphasized throughout the education. Being an interdisciplinary field of study the specialization in this area is not focused on scientific disciplines, but on the different branches of the research. Historically ethics has not been a priority in (...) science education, however, in recent years the importance of such teachings has been highly recognize especially in medicine, biotechnology and engineering. The rapid development, the many new and unknown areas and the highly specialized focus of nanotechnology suggest the importance of having ethically competent researchers. In this article the importance of ethical competence in nanoscience research is argued for by an example of a dilemma that could occur in a research project. The dilemma is analyzed using two different ethical views, generating two different choices for action. It is seen that the dilemma can have more than one solution and that ethical competence can help in justifying the choice of solution in a specific situation. Furthermore it is suggested that a way to reach this competence is through education in ethics incorporated into the nanoscience education curriculum. (shrink)

The article analyses the three terms autonomy, dignity and vulnerability. The relevance and practical application of the terms is tested in two spheres. First, as guiding principles in the area of ethics of medicines and science. Second, as human rights principles, serving to guide the conduct of public policies for an effective realization of human rights. The article argues that all human beings have the same dignity, but that the autonomy—and therefore vulnerability—differs considerably. Simply said, with reduced autonomy comes increased (...) vulnerability, implying extra attention to the protective dimensions. The article finds that the three terms approach the protection of human beings in different ways and that all are relevant and applicable in both spheres, but that an isolated notion of autonomy and a ‘group-based’ notion of vulnerability are not adequate. (shrink)

Suicide prevention is a National Health Service priority in the United Kingdom. People with mental illness are seen to represent one of the most vulnerable groups for suicide and recent British Government policy has focused on prevention and management of perceived risk. This approach to suicide prevention is constructed under a biomedical model of psychiatry, which maintains that suicidal persons suffer from some form of disease or irrational drive towards self-destruction. Many react to the idea of self-inflicted death with instinctive (...) revulsion, which has prevented serious discussion of the concept of rational suicide, particularly in relation to those with schizophrenia. The idea that there may be circumstances in which suicide can be viewed as rational is discussed within the biomedical approach to ethics and wider literature primarily in relation to physical disease, terminal states and chronic pain. It is not deemed a viable choice for those who are considered ‘non-autonomous’ due to the controlling forces of mental illness. I propose that suicide is not a consequence of mental illness per se, and that it may be seen as a rational response to a realistic perspective on the course and consequences of living with schizophrenia. The denial of dialogue about the validity of suicidal ideation for people with schizophrenia has led to negative consequences for people with serious mental illness in terms of justice and recognition of person-hood. (shrink)

Human papillomavirus (HPV) infection is the world’s most common sexually transmitted infection. It is a prerequisite for cervical cancer, the second most common cause of death in cancer among women worldwide, and is also believed to cause other anogenital and head and neck cancers. Vaccines that protect against the most common cancer-causing HPV types have recently become available, and different countries have taken different approaches to implementing vaccination. This paper examines the ethics of alternative HPV vaccination strategies. It devotes particular (...) attention to the major arguments for and against one strategy: voluntary, publicly funded vaccination for all adolescent boys and girls. This approach seems attractive because it would protect more people against cervical cancer and other HPV-related cancers than less inclusive alternatives, without the sacrifice of autonomy that a comparably broad compulsory programme would require. Also, the herd immunity that it would likely generate would protect those who remain unvaccinated, a major advantage from a justice perspective. However, there is a possibility that a HPV vaccination programme targeting all adolescents of both sexes is not considered sufficiently cost-effective. Also, it might pose more difficulties for achieving informed consent than comparable vaccination programmes against other diseases. Ultimately, society’s choice of HPV vaccination strategy requires careful consideration not only of the values at stake but also of available and emerging scientific evidence. (shrink)

For years now, autonomy has been discussed as one of the central values in health care. Understood as self-realization, it is opposed to paternalism which is conceived as an intolerable occurrence of heteronomy. Although different concepts have been developed to nuance this opposition, when it comes to health care discourse, heteronomy is still the enemy of autonomy. In our article, we defend the thesis that autonomy is only achievable as heteronomy. We are not arguing for an expansion of the meaning (...) of autonomy, but are attempting to conduct an analysis which lays bare the ‘disrupting’ attendance of heteronomy within the principle of autonomy. Autonomy does not begin where heteronomy ends, but can only begin if heteronomy is already involved. To emphasize this, we prefer to elaborate a new concept: ‘oughtonomy’. This concept is inspired by Jacques Derrida’s distinction between ‘difference’ and ‘differance’. We will develop the concept of oughtonomy from a deconstructive reading of Kant’s idea of autonomy, inspired by philosophers such as Jacob Rogozinski, Jean-Luc Nancy and others. In addition to a first exploration of this concept, this article also discusses the possible consequences of oughtonomy for current debates concerning health care. Our quest for a new understanding of autonomy is motivated by the concern that, although the accent on autonomy as self-realization and independence has many advantages, we should also bear in mind the countless disadvantages. (shrink)

Two ways of understanding the notion of autonomy are outlined and discussed in this article, in order to clarify how and if informed consent requirements in biotechnological research are to be justified by the promotion of personal autonomy: A proceduralist conception linking autonomy with authenticity, and a substantivist conception linking autonomy with control. The importance of distinguishing autonomy from liberty is emphasised, which opens for a possible conflict between respecting the freedom and the autonomy of research participants. It is argued (...) that this has implications for how consent requirements based on different criteria of specificity and understanding should be viewed and justified. (shrink)

Drawing on Lennart Nordenfelt’s distinction between the four distinct senses of dignity, I elucidate the meaning of dignity in the context of research involving human subjects. I acknowledge that different interpretations of the personal senses of dignity may be acceptable in human subject research, but that inherent dignity (Menschenwürde) is not open to interpretation in the same way. In order to map out the grounds for interpreting dignity, I examine the unique application of the principle of respect for dignity in (...) Canada’s research ethics guidelines. These guidelines are unique because they consider dignity to be a foundational concept and the protection of the dignity of research subjects is regarded as a measure that prevents “the impoverishment of humanity as a whole”. While the conception of humanity invoked here is incomplete, Canada’s research ethics guidelines nevertheless represent a more European approach to biomedical policy. Finally, in order to correct a pervasive blind spot in contemporary policy on research involving human subjects, I sketch a functional model for attributing inherent dignity that avoids the untenable connotations of speciesism. (shrink)

Our approach to global bioethics will depend, among other things, on how we answer the questions whether global bioethics is possible and whether it, if it is possible, is desirable. Our approach to global bioethics will also vary depending on whether we believe that the required bioethical deliberation should take as its principal point of departure that which we have in common or that which we have in common and that on which we differ. The aim of this article is (...) to elaborate a theoretical underpinning for a bioethics that acknowledges the diversity of traditions and experiences without leading to relativism. The theoretical underpinning will be elaborated through an exploration of the concepts of sameness, otherness, self and other, and through a discussion of the conditions for understanding and critical reflection. Furthermore, the article discusses whether the principle of respect for the other as both the same and different can function as the normative core of this global bioethics. The article also discusses the New Jersey Death Definition Law and the Japanese Transplantation Law. These laws are helpful in order to highlight possible implications of the principle of respect for the other as both the same and different. Both of these laws open the door to more than one concept of death within one and the same legal system. Both of them relate preference for a particular concept of death to religious and/or cultural beliefs. (shrink)

Purpose: To survey the attitudes of the general public in Sweden to biobank research and to discuss the findings in the light of some well-known ethical principles.Methods: A questionnaire was used to survey the opinions of the general public in Sweden, and an ethical analysis (using the principles of autonomy, non-maleficence, beneficence and justice) was performed to discuss the possible conditions of such research.Findings: Between 3 and 9% answered that they did not want their samples to be collected and stored (...) in a biobank. Many respondents required information about the purpose of the research and wanted to be able to consent or refuse. About one third of the respondents said they would have answered differently if financial gain was involved and those who commented indicated a more negative attitude. The principle of autonomy maintains that the right to self-determination should be respected, and the principles of non-maleficence and beneficence that the probable harms and benefits resulting from a particular project by using samples from a biobank should be balanced. The general public disagree about how these principles are to be balanced. Interpretation: In the light of the findings different interpretations of the situation as well as possible alternatives are discussed in this paper. (shrink)

In Dutch healthcare policy patients are seen as informed, autonomous experts and active decision makers with control over their illness and care. Healthcare professionals are expected to operate as providers of information. The purpose of this article is to argue that the consumerist approach of the patient–professional relationship is not a productive way to envision the patient–professional relationship. We argue that an interpretive/deliberative model is a more productive way to envision this relationship, especially in the care for people with a (...) chronic illness. This is illustrated with a case study. It concerns a study of the experiences of a Multiple Sclerosis (MS) patient and healthcare professionals involved in her care. The presented stories show that the participants did not act in line with the roles and responsibilities embodied in the consumerism rhetoric in Dutch healthcare policy. Expectations of patients and healthcare professionals are better met when care is redefined as mutual endeavour in which the caring abilities of healthcare professionals and the vulnerability of chronically ill patients are taken into account. (shrink)

“Geneticization” is a term used to describe the ways in which the science of genetics is influencing society at large and medicine in particular; it has important implications for the process of diagnostics. Because genetic diagnostics produces knowledge about genetic disease and predisposition to disease, it is essentially influenced by these innovations in the disease concept. In this paper, I argue that genetic diagnostics presents new ethical challenges not because the diagnostic process or method in genetic diagnostics is ethically different (...) in kind from traditional medical diagnostics, but because it relies on a neo-ontological concept of disease in a context of genetic reductionism. Geneticization has not produced a radically new concept of disease, however, but has introduced innovations into the classical ontological concept of disease. When this new concept of disease is held in tandem with genetic reductionism, we are led to the absurd conclusion that disease is the very essence of the human being. I argue that neither the neo-ontological concept of disease nor genetic reductionism is necessary for a proper understanding of genetic diagnostics. (shrink)

Even though respect for integrity is hailed in several authoritative legal and ethical documents, and is typically presented as a complement to respect for autonomy, it is largely neglected in many leading works in ethics. Is such neglect warranted, or does it express a prejudice? This article argues that the latter is the case, and that this is due to misplaced conceptual concerns. It offers some proposals as regards the conceptualization of integrity in social ethics in general and in biomedical (...) ethics in particular. Five main directions of interpretation of “integrity” are discerned and shown to be relevant for different areas of biomedical ethics. The defense of respect for integrity is served by a softening of principlism and by greater attention to context among the initial critics of this principle. (shrink)

This paper seeks to respond to some of the recent criticisms directed toward bioethics by offering a contribution to a “critical bioethics”. Here this concept is principally defined in terms of the three features of interdisciplinarity, self-reflexivity and the avoidance of uncritical complicity. In a partial reclamation of the ideas of V.R. Potter, it is argued that a critical bioethics requires a meaningful challenge to culture/nature dualism, expressed in bioethics as the distinction between medical ethics and ecological ethics. Such a (...) contesting of the “bio” in bioethics arrests its ethical bracketing of environmental and animal ethics. Taken together, the triadic definition of a critical bioethics offered here provides a potential framework with which to fend off critiques of commercial capture or of being “too close to science” commonly directed toward bioethics. (shrink)

For the past several years patients have been expected to play a key role in their recovery. Self management and disease management have reached a hype status. Considering these recent trends what does this mean for the division of responsibilities between doctors and patients? What kind of role should healthcare providers play? With findings based on a qualitative research project of an innovative practice for people with Chronic Obstructive Pulmonary Disease (COPD) we reflect on these questions. In-depth interviews conducted with (...) people with COPD, physiotherapists and a pulmonologist show that shifting responsibilities require a supportive attitude from healthcare providers and a dialogical communication between patients and professionals. Our findings show more is needed in order to motivate people with COPD to take responsibility and become co-owners in a process of recovery. The case example illustrates that people with COPD need support from fellow patients to learn to accept their disabilities. Awareness that COPD is more than just a lack of air, that mind and body interact, is a first step to investigate other potential problems and to enhance one’s quality of life. (shrink)

The rule of rescue describes the moral impulse to save identifiable lives in immediate danger at any expense. Think of the extremes taken to rescue a small child who has fallen down a well, a woman pinned beneath the rubble of an earthquake, or a submarine crew trapped on the ocean floor. No effort is deemed too great. Yet should this same moral instinct to rescue, regardless of cost, be applied in the emergency room, the hospital, or the community clinic? (...) -/- In health care, the desire to save lives at any cost must be reconciled with the reality of resource scarcity. As one example, the estimated cost for prophylactic Factor VIII to treat one patient with hemophilia for one year is $300,000. Costs of this magnitude have been accepted by public and private insurers in the developed world, even though, in principle, these sums could provide greater overall health benefit if allocated to pay for the unmet health care needs of many other patients. Looking forward, however, broad application of the rule of rescue will be increasingly untenable. But the moral instinct will remain: the desire to help those weakest among us, especially when their small numbers allow us to see them as unique individuals. What, then, is the ethical framework that can guide coverage and reimbursement decisions for orphan drugs into the future? (shrink)

In spite of the growing interest in nursing ethics, few studies have focused on ethical dilemmas experienced by nurses working with clinical studies as ‘research nurses’. The aim of the present study was to describe and explore ethical dilemmas that Swedish research nurses experience in their day-to-day work. In a qualitative study a purposeful sample of six research nurses from five wards of differing disciplines in four Swedish hospitals was interviewed. The analysis displayed several examples of ethical dilemmas, primarily tensions (...) between the nurses’ obligations to the study and to the patients involved. A guiding moral principle for the nurses was patient-centeredness, where the interest of research must not override the interest of the patient. In situations where tensions between research and patient interests occurred, and doctors and nurses disagreed upon the judgement, the nurses sometimes chose to follow the doctors’ advice, and thus acted against their own moral judgment. Such situations seemed to create feelings of moral distress among the nurses. They described their profession as being ‘invisible’ and as lacking opportunities for ethical competence building. The conclusion is that research nurses frequently experience severe and difficult ethical dilemmas in their daily work. They need to be acknowledged as a particular profession in the health care organisation and encouraged to develop their specific ethical competence. (shrink)

Bioethics uses various theories, methods and institutions for its decision-making. Lately, a dialogical, i.e., dialogue-based, approach has been argued for in bioethics. The aim of this paper is to explore some of the decision-making processes that may be involved in this dialogical approach, as well as related pitfalls that may have to be addressed in order for this approach to be helpful, particularly in clinical ethics. Using informal logic, an analysis is presented of the notion of dialogue and of the (...) stages of dialogical decision-making, and then processes and related pitfalls associated with these stages in the context of clinical ethics are examined. The results of this exploration are expected to facilitate the implementation and empirical testing of dialogical bioethics. (shrink)

The cases of Diane Pretty and Ms B. raise crucial issues about decision-making and autonomy at the end of life. Ms B. was permitted her wish to die rather than live permanently dependent upon a ventilator because her case was constructed as one about withholding consent to medical treatment, which every adult with capacity has a right to do. Mrs Pretty, however, sought active intervention to end her life. Requiring assistance to die, and claiming that this was her human right, (...) she sought an assurance that her husband would not be prosecuted if he helped her. Her claim was rejected and the assurance refused. The cases prompt questions about the nature of autonomy, the influence of others and the different way sin which medical and legal decisions are made. (shrink)

Die Behandlung von einwilligungsunfähigen psychisch kranken Menschen mit neuen Therapiemethoden ist insbesondere im Kontext des „individuellen Heilversuchs“, der als Anwendung wenig erprobter Therapieansätze im Rahmen von „ultima ratio“-Entscheidungen charakterisiert ist, mit ethischen Abwägungsproblemen verbunden. Diese bestehen aufgrund von Einschränkungen in der Handlungs- und Entscheidungsautonomie der betroffenen Patienten und, aufgrund eigen- oder fremdgefährdender Symptome der psychischen Krankheit selbst, insbesondere in der praktischen Umsetzung ethisch akzeptierter Modelle stellvertretender Entscheidung sowie in der Wahl des Bezugspunkts der Nutzen-Risiko-Analyse des intendierten Therapieverfahrens. Der Artikel untersucht (...) den ethischen Konflikt zwischen gerechtfertigter Hilfeleistung und Instrumentalisierungsrisiko psychisch kranker Menschen zu Fremdzwecken am historischen Beispiel der „Rindenexcisionen“ des Psychiaters Gottlieb Burckhardt (1836–1907). Als Lösungsmöglichkeit dieses ethischen Konflikts wird das „Konzept des kontrollierten individuellen Heilversuchs“ diskutiert. (shrink)

ZusammenfassungBei den meisten Patienten, die heute erwartet an einer unheilbaren Krankheit versterben, wird vor ihrem Tod eine bewusste Entscheidung zum Therapieverzicht getroffen. Während dem Therapieverzicht auf Wunsch des Patienten ein wichtiger Stellenwert in der medizinethischen Diskussion zukommt, hat der Umgang mit Forderung nach „unangemessener“ Maximaltherapie bislang weniger Beachtung gefunden. In einer empirischen Studie zur Einbeziehung von Patienten in Entscheidungen zum Therapieverzicht konnten wir zeigen, dass etwa ein Drittel der Patienten auch bei infauster Prognose Lebenszeit durch Maximaltherapie gewinnen möchte. Diese Patienten (...) wurden im Gegensatz zu Patienten mit palliativem Therapieziel häufig nicht in Entscheidungen zur Therapiebegrenzung einbezogen. Hier werden die ethischen Implikationen dieser Praxis untersucht und gefragt, ob ein Therapieverzicht am Lebensende auch gegen den Wunsch des Patienten ethisch zu rechtfertigen ist oder ob Ärzte dem Wunsch des Patienten nach Lebenszeitgewinn auch bei infauster Prognose durch Maximaltherapie nachkommen sollen. Vor dem Hintergrund der gängigen Konzepte zur Rechtfertigung eines einseitigen Therapieverzichts, die für sich genommen zu kurz greifen, wird ein alternatives Entscheidungsmodell vorgestellt, das vier bewertungsrelevante Kriterien vorsieht: die Wirksamkeit einer Maßnahme, die Autonomiefähigkeit des Patienten, die patientenseitige Nutzenbewertung und die Kosten für die Solidargemeinschaft. Je nachdem, welche Kriterien erfüllt sind, rechtfertigen sie eine Entscheidung zum Therapieverzicht oder eine Fortsetzung der Therapie entsprechend dem Patientenwillen. (shrink)

Sowohl in der klinischen und rechtlichen Praxis als auch in der Medizinethik besteht Uneinigkeit darüber, was die (moralische) Verbindlichkeit von Patientenverfügungen begründet und wie mit ihnen in der Praxis zu verfahren ist. Dieser Artikel versucht, die ethisch-normative Basis von Patientenverfügungen näher zu beleuchten. Eine Bestimmung erfolgt in drei Schritten. Erstens wird analysiert, welche Autonomiekonzeption Patientenverfügungen zugrunde liegt. Patientenverfügungen, so meine These, sind Ausdruck eines relationalen, um den Aspekt der Persönlichkeit angereicherten Autonomiebegriffs. Eine moralische Verbindlichkeit ist mit dieser Analyse noch nicht (...) geklärt. Im Anschluss werden daher Argumente gesammelt, warum eine Patientenverfügung für Drittpersonen moralische Bindungskraft haben könnte. In der Achtung der Persönlichkeit sehe ich hier einen zentralen Punkt. Ob die Legitimität der in einer Patientenverfügung geäußerten Wünsche relativ zu einer bestehenden Rechtskultur, dem Allgemeinverständnis einer Gesellschaft oder der Kultur einer medizinischen Praxis ist, oder unabhängig vom soziokulturellen Kontext begründet werden kann, bleibt dabei eine offene Frage. (shrink)

In der Medizinethik sind der Respekt vor der Patientenselbstbestimmung, das Nichtschadensgebot, das Handeln zum Wohl des Kranken und das Gerechtigkeitsgebot praxisrelevante Prinzipien. Anhand des Beispiels der Frühintervention und Akutbehandlung schizophrener Störungen wird aufgezeigt, dass es in der psychiatrischen Praxis zu einer Kollision dieser Prinzipien kommen kann. Der frühe Krankheitsbeginn und der häufig chronische Verlauf schizophrener Störungen führen zu großem Leid der Betroffenen und ihrer Angehörigen sowie zur ökonomischen Belastung der Solidargemeinschaft. Die negativen Folgen einer verzögerten Intervention stehen den Risiken der (...) Stigmatisierung sowie den möglichen Nebenwirkungen durch die psychotherapeutische oder psychopharmakologische Behandlung gegenüber. Es wird für eine an der konkreten Situation orientierte, lebensnahe und dynamische Ethik plädiert, die vom konkreten Fall aus diskutiert und verschiedene Perspektiven berücksichtigt – mit dem Ziel von einer Arztethik und Patientenethik zu einer Verantwortungspartnerschaft zu gelangen. (shrink)

Die Medikamentenversorgung während der Schwangerschaft stellt für die zu behandelnden Frauen und die behandelnden Ärzte gleichermaßen ein Problem dar. Eine „evidence based“ Therapie wirft allerdings die schwierigen Fragen auf, ob und inwiefern Arzneimittelforschung an schwangeren Frauen gerechtfertigt sein könnte und, wenn ja, unter welchen Bedingungen. In meinem Beitrag stelle ich die aktuelle Situation hinsichtlich Forschung und Therapie während der Schwangerschaft dar. Es folgt eine Darstellung von Ergebnissen aus Gesprächen, die mit schwangeren und frisch entbundenen Frauen geführt wurden. Abschließend werden die (...) Kernkonflikte der Debatte diskutiert, und es wird aufgezeigt, dass Arzneimittelforschung an schwangeren Frauen dringend geboten ist. Nur in einer geringen Anzahl von Studientypen ergeben sich tatsächlich problematische Fragen, zu deren Lösung verschiedene Argumentationslinien aufgezeigt werden. (shrink)

In diesem Artikel geht es um die Beziehungen zwischen der von Jürgen Habermas entwickelten Diskursethik und den Studierendenseminaren, die der Ulmer Arbeitskreis „Ethik in der Medizin“ veranstaltet. Zunächst erfolgt eine Darstellung der Kernaussagen der philosophischen Diskursethik. Sie liefert eine formale Argumentationsprozedur, mit der es möglich ist, die Legitimität strittig gewordener Normen im Diskurs zu prüfen. Anschließend wird das in Ulm von Baitsch und Sponholz entwickelte Modell der Seminare „Ethische Entscheidungskonflikte im ärztlichen Alltag“ vorgestellt. Da sich die Ulmer Seminare unter anderem (...) auf die Diskursethik als theoretischen Hintergrund berufen, werden die Gemeinsamkeiten und Unterschiede beider Konzepte untersucht. Der Hauptunterschied ist der zwischen einem Begründungs- und einem Anwendungsdiskurs. Gemeinsam sind den Ansätzen die grundsätzlich kognitivistische Einstellung und die „Spielregeln“ des Diskurses. (shrink)

The 2006 Centers for Disease Control and Prevention (CDC) revised recommendations for HIV testing in clinical settings contained seven specific changes to how health care facilities should provide HIV testing. These seven elements have been both supported and challenged in the lay and medical literature. Our first paper in BMC Medical Ethics presented an analysis of the three HIV testing procedural changes included in the recommendations. In this paper, we address the four remaining elements that concern HIV screening policy changes: (...) (1) nontargeted HIV screening, (2) making HIV screening similar to screening for other treatable conditions, (3) increasing HIV screening without assured additional funding for linkage to care, and (4) making patients bear the costs of increased HIV screening in health care settings. (shrink)

In 2008 UK legislation was amended to enable the use of deferred consent for paediatric emergency care (EC) trials in recognition of the practical and ethical difficulties of obtaining prospective consent in an emergency situation. However, ambiguity about how to make deferred consent acceptable to parents, children and practitioners remains. In particular, little is known about practitioners’ views and experiences of seeking deferred consent in this setting.

Little is known about older persons’ expectancies (or anticipations) about the possible actions of home-care professionals, although such data have implications for the ethics of home care and home-care policies. From a longitudinal study of older women’s experience of home care, findings are reported concerning their expectancies of professional home-care providers. A descriptive phenomenological method was used to detail the structure of the experience and its context. Data were analyzed from a series of interviews with 13 women aged 82 to (...) 96 years. Among the five key structures of experience were ‘finding that someone has the job of helping me here’ and ‘determining where the helper’s field lies’. Two subsets within a category of expectancies were differentiated: speculations about helpers’ possible actions and expectancies about outcomes of helpers’ actions. As parameters of relational ethics, clients’ speculations and expectancies are appropriate bases for dialogue about older widows’ relationships with home-care professionals and the foci of home-care policies. (shrink)

Feeding difficulties in older patients who are suffering from dementia present problems with balancing conflicting ethical principles. They have been considered by several writers in recent years, and the views of nursing and care staff have been studied in different contexts. The present study used focus groups to explore the way in which nursing and care staff in a National Health Service trust deal with conflict between ethical principles in this area. Three focus groups were convened, one each from the (...) staff of three wards caring for patients with dementia. Case histories were discussed and transcripts analysed. It emerged that staff were aware of making fine judgements of utility concerning the spectrum of feeding methods available. Informants gave some weight to the principle of autonomy, but sought to balance that against their commitment to care. In explaining their perspectives, informants gave more weight to personal attitudes and trust culture than to professional ethics. (shrink)

Since the Nuremberg trials (1947–1949), informed consent has become central for ethical practice in patient care and biomedical research. Codes of ethics emanating from the Nuremberg Code (1947) recognize the importance of protecting patients and research subjects from abuses, manipulation and deception. Informed consent empowers individuals to autonomously and voluntarily accept or reject participation in either clinical treatment or research. In some cases, however, the underlying mental or physical condition of the individual may alter his or her cognitive abilities and (...) compromise the informed consent process. This is particularly true in chronic psychiatric conditions such as Treatment-Resistant Depression (TRD), where individuals may fail to respond to traditional antidepressant treatments (e.g., psychotherapy, pharmacotherapy). Moreover, it may raise further concerns for an individual’s motivation to consent and the level of understanding of the treatment or research procedure. This paper focuses on the informed consent process for Vagus Nerve Stimulation (VNS) in the treatment of individuals diagnosed with TRD. Specifically, the paper addresses how depression may affect the decision-making capacity of an individual and the potential ethical and legal impact of failure to appreciate the seven elements of the consenting process (competence, voluntariness, disclosure, recommendation, understanding, decision, and authorization). To ensure the protection of vulnerable individuals with psychiatric disorders such as TRD and promote ethical behavior in biomedical research and patient care while avoiding potential legal pitfalls, we propose a paradigm that requires a stringent evaluation process of decision-making capacity for informed consent. (shrink)

Recently, moral deliberation within care institutions is gaining more attention in medical ethics. Ongoing dialogues about ethical issues are considered as a vehicle for quality improvement of health care practices. The rise of ethical conversation methods can be understood against the broader development within medical ethics in which interaction and dialogue are seen as alternatives for both theoretical or individual reflection on ethical questions. In other disciplines, intersubjectivity is also seen as a way to handle practical problems, and methodologies have (...) emerged to deal with dynamic processes of practice improvement. An example is responsive evaluation. In this article we investigate the relationship between moral deliberation and responsive evaluation, describe their common basis in dialogical ethics and pragmatic hermeneutics, and explore the relevance of both for improving the quality of care. The synergy between the approaches is illustrated by a case example in which both play a distinct and complementary role. It concerns the implementation of quality criteria for coercion in Dutch psychiatry. (shrink)

In terms of intervening in embodied experience, medical treatment is wonder-full in its ambition and its metaphysical presumption; yet, wonder’s role in clinical medicine has received little philosophical attention. In this paper, I propose, to doctors and others in routine clinical life, the value of an openness to wonder and to the sense of wonder. Key to this is the identity of the central ethical challenges facing most clinicians, which is not the high-tech drama of the popular conceptions of medical (...) ethics but, rather, the routine of patients’ undramatic but unremitting demands for the clinician’s time and respectful attention. Wonder (conceived as an intense and transfiguring attentiveness) is a ubiquitous ethical source, an alternative to the more familiar respect for rational autonomy, a source of renewal galvanizing diagnostic imagination, and a timely recalling of the embodied agency of both patient and clinician. (shrink)

The origins of professional ethical codes and oaths are explored. Their legitimacy and usefulness within the profession are questioned and an alternative ethical source is suggested. This source relies on a commonly shared, naturally knowable set of principles known as common morality.

Based on an empirical study regarding ethical challenges within intercultural health care, the focus of this article is upon autonomy and disclosure, discussed in light of philosophy and anthropology. What are the consequences for patients if the patients’ right to be autonomous and to participate in treatment and care decisions by health care workers is interpreted as an obligation to participate? To force a person to make independent choices who is socio-culturally unprepared to do so, may violate his/her integrity. This (...) may in turn jeopardise the respect, integrity and human worth the principle of autonomy was meant to ensure, and if so, may damage any relationship of trust that may exist between patient and health care worker. There is necessarily a link between autonomy and disclosure. Western disclosure practices may make the relationship between patients and health care workers difficult -- even distrustful. To confront a patient with a very serious diagnosis may be seen not only as a tactless action, but also an unforgivable one. Hence, among many ethnic groups it is a family member’s duty to shield patients from bad or disquieting news, e.g., a cancer diagnosis. If a family member is used to interpret in such situations, will the information given equal the information communicated by that interpreter? Even though respect for a person’s autonomy is part of the respect for a person, one’s respect for the person in question should not depend on his/her ability or aptitude to act autonomously. (shrink)

This paper deals with ethical issues of particular relevance to longitudinal research involving children. First some general problems concerning information and lack of understanding are discussed. Thereafter focus is shifted to issues concerning information and consent procedures in studies that include young children growing up to become autonomous persons while the project still runs. Some of the questions raised are: When is it right to include children in longitudinal studies? Is an approval from the child needed? How should information to (...) children be handled? A general point stressed is that autonomy considerations underline the importance of adjusting the information given to meet demands. A “presumption of competence” may be needed in research involving children, in order to pay their views sufficient attention. (shrink)

Clinical ethics committees aim to resolve conflict, facilitate communication and ease moral distress in health care. Dialogue in committee discussions is complex and involves a balance between implicitly and explicitly expressed values of patients, families and professionals. Evaluating effectiveness and concrete outcomes is challenging and most studies focus on broad benefits such as quality of care and reduction of unnecessary or unwanted treatments. In this paper we propose ‘physician satisfaction’ as a valuable outcome. We refer to the clinical ethics approach (...) followed at one large paediatric hospital in Australia, propose reasons for the often-expressed feeling of satisfaction and discuss why this feeling matters. We conclude that physician satisfaction is a valid measure of an effective ethics consultation because it implies the person has been listened to and respected by others, and has perhaps developed greater understanding of and insights into their own work and values, and those of others. (shrink)

BackgroundBeta thalassemia major is a severe inherited form of hemolytic anemia that results from ineffective erythropoiesis. Allogenic hematopoietic stem cell transplantation (HSCT) remains the only potentially curative therapy. Unfortunately, the subgroup of adult thalassemia patients with hepatomegaly, portal fibrosis and a history of irregular iron chelation have an elevated risk for transplantation-related mortality that is currently estimated to be about 29 percent.DiscussionThalassemia patients may be faced with a difficult choice: they can either continue conventional transfusion and iron chelation therapy or (...) accept the high mortality risk of HSCT in the hope of obtaining complete recovery.Throughout the decision making process, every effort should be made to sustain and enhance autonomous choice. The concept of conscious consent becomes particularly important. The patient must be made fully aware of the favourable and adverse outcomes of HSCT. Although it is the physician's duty to illustrate the possibility of completely restoring health, considerable emphasis should be put on the adverse effects of the procedure. The physician also needs to decide whether the patient is eligible for HSCT according to the "rule of descending order". The patient must be given full details on self-care and fundamental lifestyle changes and be fully aware that he/she will be partly responsible for the outcome.SummaryOnly if all the aforesaid conditions are satisfied can it be considered reasonable to propose unrelated HSCT as a potential cure for high risk thalassemia patients. (shrink)

Health care institutions have paid increasing attention to preventing nosocomial transmission of influenza through vaccination of health care personnel. While multifaceted voluntary interventions have increased vaccination rates, proponents of mandatory programs contend the rates remain unacceptably low. Conventional bioethical analyses of mandatory programs are inadequate; they fail to account for the obligations of nonprofessional personnel or to justify the weights assigned to different ethical principles. Using an ethics framework for public health permits a fuller analysis. The framework's focus on fairness (...) accentuates the potential differences between the risk of transmitting infection and employment status, and the need to equitably evaluate exemptions. The framework's emphasis on balancing benefits and burdens highlights the need to justify a specific goal and questions the need to exclude all nonmedical exemptions. While mandatory vaccination programs are justifiable, greater attention should be paid to their implementation. (shrink)

This essay considers implications of formal mereologies and ontologies for medical metaphysics. Edward Fried’s extensional mereological account of the human body is taken as representative of a prominent strand in analytic metaphysics that has close affinities with medical positivism. I show why such accounts fail. First, I consider how Fried attempts to make sense of the medical case of Barney Clark, the first recipient of an artificial heart, and show that his analytic metaphysical categories do not have the right kind (...) of fit with the case. A proper medical metaphysic should involve a richer two way dialogue with medicine, and it should not just “apply” formal accounts worked out in other settings. Second, I argue that any effort to account for real wholes with extensional mereological sums requires all sorts of ad hoc, supplementary mechanisms that do the real work, and the full repertoire of these mechanisms involves inconsistencies and semantic shifts. Finally, I consider an alternative strand of work on non-extensional whole/part relations that is closer to medicine and that can deepen reflection on some core problems in bioethics, for example, associated with the determination of death when an organism ceases to function as a whole. In addition to the utility such formal ontologies have for addressing traditional problems such as the determination of death, philosophers of medicine should appreciate the increasingly influential role such formal tools are playing in the development of data system ontologies. Assumptions integral to these ontologies have far reaching implications for the way future research and practice in medicine will be conducted, and much greater critical reflection is needed on the full range of issues associated with the development and use of such medical ontologies. (shrink)

This paper addresses the question of what value pluralism tells us about the pursuit of moral coherence as a method of moral reasoning. I focus on the status of the norm of ‘systematicity,’ or the demand that our principles be as few and as simple as possible. I argue that, given certain descriptive facts about the pluralistic ways we value, epistemic ways of supporting a systematicity norm do not succeed. Because it is sometimes suggested that coherence functions in moral reasoning (...) as it does in scientific reasoning, my argument considers analogies and disanalogies between moral reasoning and scientific reasoning. (shrink)

Legal restrictions of the right to self-determination increasingly pretend to be compatible with the liberal concept of autonomy: they act upon a ‘soft’ or autonomy-orientated paternalistic rationale. Conventional liberal critique of paternalism turns out to be insensitive to the intricate normative problems following from ‘soft’ or ‘libertarian’ paternalism. In fact, these autonomy-oriented forms of paternalism could actually be even more problematic and may infringe liberty rights even more intensely than hard paternalistic regulation. This paper contributes to the systematic differentiation of (...) soft and hard paternalism by discussing the (legal) concept of autonomy and elaborates the moral and legal limits of autonomy-orientated paternalism. (shrink)

In the 1970s “bioethics” emerged as a new interdisciplinary discourse on medicine, health care, and medical technologies, primarily in Western, developed countries. The main focus was on how individual patients could be empowered to cope with the challenges of science and technology. Since the 1990s, the main source of bioethical problems is the process of globalization, particularly neo-liberal market ideology. Faced with new challenges such as poverty, inequality, environmental degradation, hunger, pandemics, and organ trafficking the bioethical discourse of empowering individuals (...) is no longer sufficient. Global bioethics nowadays is concerned with applying and implementing a universal ethical framework. Islamic bioethics has contributed to creating such framework (exemplified in the UNESCO Universal Declaration on Bioethics and Human Rights) while at the same time it is continuously articulating and interpreting this framework in specific settings and contexts. (shrink)

Some have objected to human enhancement on the grounds that it violates the autonomy of the enhanced. These objections, however, overlook the interesting possibility that autonomy itself could be enhanced. How, exactly, to enhance autonomy is a difficult problem due to the numerous and diverse accounts of autonomy in the literature. Existing accounts of autonomy enhancement rely on narrow and controversial conceptions of autonomy. However, we identify one feature of autonomy common to many mainstream accounts: reasoning ability. Autonomy can then (...) be enhanced by improving people’s reasoning ability, in particular through cognitive enhancement; given how valuable autonomy is usually taken to be, this gives us extra reason to pursue such cognitive enhancements. Moreover, autonomy-based objections will be especially weak against such enhancements. As we will argue, those who are worried that enhancements will inhibit people’s autonomy should actually embrace those enhancements that will improve autonomy. (shrink)

How do we respond to the patient who no longer needs inpatient care but refuses to leave the hospital? Complex hospital discharges commonly involve consideration of legal, financial, clinical, and practical issues. Yet, the ethical and contextual issues embedded in complex inpatient discharges are of concern and have not received adequate attention by medical ethicists. The aim of this work is to encourage clinicians and administrators to incorporate a justice rubric when approaching inpatient discharge dilemmas. This paper presents justice as (...) the ethical principle most neglected in situations involving complex discharges and suggests that a justice focused lens allows clinicians and administrators to move beyond notions of patient autonomy in crafting morally responsible hospital discharge decisions that reflect efficient stewardship of an appropriate share of medically indicated services. This issue deserves additional attention from medical ethicists in the future. (shrink)

Brain Computer Interface (BCI) technology offers potential for human augmentation in areas ranging from communication to home automation, leisure and gaming. This paper addresses ethical challenges associated with the wider scale deployment of BCI as an assistive technology by documenting issues associated with the development of non-invasive BCI technology. Laboratory testing is normally carried out with volunteers but further testing with subjects, who may be in vulnerable groups is often needed to improve system operation. BCI development is technically complex, sometimes (...) requiring lengthy recording sessions to achieve the necessary personalisation of the paradigms, and this can present ethical challenges that vary depending on the subject group. The paper contributes to the on-going ethical discussion surrounding the deployment BCI outside the specialist laboratory and suggests some tentative guidelines for BCI research teams, appropriate to those deploying the technology, derived from experience on a multisite project. Any tension between deployment and technical progress must be managed by a formal process within a multidisciplinary consortium. (shrink)

With the rapid advancements made in biotechnology, bioethical discourse has become increasingly important. Bioethics is a multidisciplinary and interdisciplinary field that goes beyond the realm of natural sciences, and has involved fields in the domain of the social sciences. One of the important areas in bioethical discourse is religion. In a country like Malaysia, where Muslims make up the majority of the population, Islam plays a crucial role in providing the essential guidelines on the permissibility and acceptability of biotechnological applications (...) in various fields such as medicine, agriculture, and food processing. This article looks at the framework of a complementary model of bioethics derived from the perspective of Islam. The framework is based on ‘maqasid al-shariah’ (purposes or objectives of Islamic law) which aims to protect and preserve mankind’s faith, life, intellect, progeny, and property. It is proposed that ‘maqasid al-shariah’ be used as a pragmatic checklist that can be utilized in tackling bioethical issues and dilemmas. (shrink)

What does the term academic ethics mean? How does this term relate to others in the academic integrity literature, such as research misconduct? Does conceptual confusion in the study of academic ethics complicate development of valid analyses of ethical behavior in an academic setting? The intended goal of many empirical projects on academic ethics is to draw causal conclusions about the factors that lead to faculty or students possessing or disregarding academic integrity. Yet, it is not clear that scholars using (...) the concept academic ethics are measuring the same phenomenon when they use associated concepts, such as responsible conduct of research. The purpose of this paper is to develop a taxonomy of concepts for the empirical study of academic ethics. Based in research on comparative analysis of democracy, another normatively preferable but multifaceted concept, I argue for a taxonomy of concepts for the study of academic integrity that reduces problems of “conceptual stretching” and challenges to the validity of empirical research in this field. (shrink)

Bioethics promises a considered, unprejudicial approach to areas of medical decision-making. It does this, in theory, from the perspective of moral philosophy. But the promise of fairly considered, insightful commentary fails when word choices used in ethical arguments are prejudicial, foreclosing rather than opening an area of moral discourse. The problem is illustrated through an analysis of the language of The Royal Society Expert Panel Report: End of Life Decision Making advocating medical termination.

Despite the reported limited success of conventional treatments and growing evidence of the effectiveness of adult bariatric surgery, weight loss operations for (morbidly) obese children and adolescents are still considered to be controversial by health care professionals and lay people alike. This paper describes an explorative, qualitative study involving obesity specialists, morbidly obese adolescents, and parents and identifies attitudes and normative beliefs regarding pediatric bariatric surgery. Views on the etiology of obesity—whether it should be considered primarily a medical condition or (...) more a psychosocial problem—seem to affect the specialists’ normative opinions concerning the acceptability of bariatric procedures as a treatment option, the parents’ feelings regarding both being able to influence their child’s health and their child being able to control their own condition, and the adolescents’ sense of competence and motivation for treatment. Moreover, parents and adolescents who saw obesity as something that they could influence themselves were more in favor of non-surgical treatment and vice versa. Conflicting attitudes and normative views—e.g., with regard to concepts of disease, personal influence on health, motivation, and the possibility of a careful informed consent procedure—play an important role in the acceptability of bariatric surgery for childhood obesity. (shrink)

Before asking what U.S. bioethics might learn from a more comprehensive and more nuanced understanding of Islamic religion, history, and culture, a prior question is, how should bioethics think about religion? Two sets of commonly held assumptions impede further progress and insight. The first involves what “religion” means and how one should study it. The second is a prominent philosophical view of the role of religion in a diverse, democratic society. To move beyond these assumptions, it helps to view religion (...) as lived experience as well as a body of doctrine and to see that religious differences and controversies should be welcomed in the public square of a diverse democratic society rather than merely tolerated. (shrink)