Person-centered care offers a promising way to manage clinicians’ conscientious objection to providing services they consider morally wrong. Health care centered on persons, rather than patients, recognizes clinicians and patients on the same stratum. The moral interests of clinicians, as persons, thus warrant as much consideration as those of other persons, including patients. Interconnected moral interests of clinicians, patients, and society construct the clinician as a socially embedded and integrated self, transcending the simplistic duality of private conscience versus public role (...) expectations. In this milieu of blurred boundaries, person-centered care offers a constructive way to accommodate conscientious objection by clinicians. The constitutionally social nature of clinicians commits and enables them, through care mechanisms such as self-care, to optimize the quality of health care and protect the welfare of patients. To advance these conditions, it is recommended that the medical profession develop a person-centered culture of care, along with clinician virtues and skills for person-centered communication. (shrink)

BackgroundThis article aims to contribute to a better conceptualization of pain and suffering by providing non-essential and non-naturalistic definitions of both phenomena. Contributions of classical evidence-based medicine, the humanistic turn in medicine, as well as the phenomenology and narrative theories of suffering and pain, together with certain conceptions of the person beyond them are critically discussed with such purpose.MethodsA philosophical methodology is used, based on the review of existent literature on the topic and the argumentation in favor of what are (...) found as better definitions of suffering and pain.ResultsPain can be described in neurological terms but cognitive awareness, interpretation, behavioral dispositions, as well as cultural and educational factors have a decisive influence on pain perception. Suffering is proposed to be defined as an unpleasant or even anguishing experience, severely affecting a person at a psychophysical and existential level. Pain and suffering are considered unpleasant. However, the provided definitions neither include the idea that pain and suffering can attack and even destroy the self nor the idea that they can constructively expand the self; both perspectives can b e equally useful for managing pain and suffering, but they are not defining features of the same. Including the existential dimension in the definition of suffering highlights the relevance of suffering in life and its effect on one’s own attachment to the world. An understanding of pain and suffering life experiences is proposed, meaning that they are considered aspects of a person’s life, and the self is the ever-changing sum of these experiences.ConclusionsThe provided definitions will be useful to the identification of pain and suffering, to the discussion of how to relieve them, and to a better understanding of how they are expressed and experienced. They lay the groundwork for further research in all these areas, with the twofold aim of a) avoiding epistemological mistakes and moral injustices, and b) highlighting the limitations of medicine in the treatment of suffering and pain. (shrink)

Die bei Krebserkrankungen junger Frauen erforderliche Chemo- bzw. Strahlentherapie kann in der Folge bei den betroffenen Patientinnen zur Unfruchtbarkeit führen. Somit werden die Betroffenen oft gleichzeitig mit einer potentiell lebensbedrohlichen Erkrankung und einem potentiell kinderlosen Leben konfrontiert. Die derzeitigen Methoden zum Erhalt der Fertilität sind experimentell, mit therapeutischer Unsicherheit und gesundheitlichen Risiken belastet, dennoch werden sie zunehmend nachgefragt. Die mit dem Angebot fertilitätserhaltender Maßnahmen verbundene derzeitige Beratungspraxis wird in dem hier vorliegenden Beitrag aus ethischer Perspektive hinterfragt. Ausgehend von einer kritischen (...) Würdigung des nach wie vor häufig angewandten Autonomiekonzepts von Beauchamp und Childress wird diskutiert, auf welche Weise die normative Belastbarkeit der Entscheidungsfindung durch die Vulnerabilität der Patientin limitiert sein kann. Als Alternative zum Autonomiekonzept von Beauchamp und Childress wird anschließend eine Entscheidungsfindung auf der Grundlage biographischer Identität in Anlehnung an das Konzept der personalen Autonomie nach Quante erörtert. (shrink)

Problems posed by HIV/AIDS differ from those ofpast epidemics by virtue of unique propertiesof the causative agent, dramatic societalchanges of the late 20th century, and thetransition of medical practice from aprofessional ethic to a technology-dependentbusiness ethic. HIV/AIDS struck during thecoming-of-age of molecular biology and also ofbioethics, and the epidemic stimulated thegrowth of both disciplines. The number ofarticles published about AIDS and ethics (asidentified by a MEDLINE search) peaked in 1990,just before the peak incidence of AIDS in theUnited States. The character (...) of ethicaldialogue has now shifted from familiar moralquandaries such as civil liberty versus publicwelfare to concerns about vaccine trials andpublic policy toward the developing world.Physicians and other health care workers whowere involved from the onset endured somethingof an emotional roller coaster. Theircompassion-based work ethic was to a largeextent replaced by a competence-based workethic after the introduction in 1996 of highlyactive antiretroviral therapy. The abundantrecent literature on ``professionalism'' inmedicine makes scant mention of AIDS/HIV. Thedisruptive effect of AIDS/HIV on society wouldhave been substantially greater had relevanttechnology such as the ability to isolateretroviruses and potent therapy againsttuberculosis not been in place. This soberingconsideration, along with such recent events asthe use of bioterrorism against civilianpopulations, suggests new relevance forPotter's definition of ``bioethics'' as a scienceof survival in which the biology of ecosystemsmust be taken into account. (shrink)

Douglas Diekema has argued that it is not the best interest standard, but the harm principle that serves as the moral basis for ethicists, clinicians, and the courts to trigger state intervention to limit parental authority in the clinic. Diekema claims the harm principle is especially effective in justifying state intervention in cases of religiously motivated medical neglect in pediatrics involving Jehovah’s Witnesses and Christian Scientists. I argue that Diekema has not articulated a harm principle that is capable of justifying (...) state intervention in these cases. Where disagreements over appropriate care are tethered to metaphysical disagreements, it is moral-metaphysical standards, rather than merely moral standards, that are needed to provide substantive guidance. I provide a discussion of Diekema’s harm principle to the broader end of highlighting an inconsistency between the theory and practice of secular bioethics when overriding religiously based medical decisions. In a secular state, ethicists, clinicians, and the courts are purportedly neutral with respect to moral-metaphysical positions, especially regarding those claims considered to be religious. However, the practice of overriding religiously based parental requests requires doffing the mantle of neutrality. In the search for a meaningful standard by which to override religiously based parental requests in pediatrics, bioethicists cannot avoid some minimal metaphysical commitments. To resolve this inconsistency, bioethicists must either begin permitting religiously based requests, even at the cost of children’s lives, or admit that at least some moral-metaphysical disputes can be rationally adjudicated. (shrink)

This article describes and rejects three standard views of reason in secular clinical ethics. The first, instrumental reason view, affirms that reason may be used to draw conceptual distinctions, map moral geography, and identify invalid forms of argumentation, but prohibits recommendations because reason cannot justify any content-full moral or metaphysical commitments. The second, public reason view, affirms instrumental reason, and claims ethicists may make recommendations grounded in the moral and metaphysical commitments of bioethical consensus. The third, comprehensive reason view, also (...) affirms instrumental reason, but encourages ethicists to make recommendations grounded in the moral and metaphysical commitments of their private worldviews. A compatibilist view of public reason is then defended, which holds that each standard view captures an important role for reason in different aspects of secular clinical ethics. The article ends by identifying three implications for enduring theoretical debates in clinical ethics. (shrink)

What is the proper role of a clinical ethics consultant’s religious beliefs in forming recommendations for clinical ethics consultation? Where Janet Malek has argued that religious belief should have no influence on the formation of a CEC’s recommendations, Clint Parker has argued a CEC should freely appeal to all their background beliefs, including religious beliefs, in formulating their recommendations. In this paper, I critique both their views by arguing the position envisioned by Malek puts the CEC too far from religion (...) and the position envisioned by Parker puts the CEC too close. For a CEC to give recommendations about what is morally prohibited, permissible, or obligatory in the clinic, I propose a view of the CEC that is neither religious nor non-religious but quasi-religious. I argue that a quasi-religious approach avoids the problems of both religious and non-religious views while preserving their benefits. Additionally, a quasi-religious view resists the marginalization of “religious” traditions that occurs when secular ethicists come to think of their approach as somehow distinctly non-religious. (shrink)

Chronic disorders of consciousness, particularly the vegetative and the minimally conscious states, pose serious diagnostic challenges to neurologists and clinical psychologists. A look at the concept of “diagnosis” in medicine reveals its social construction: While medical categorizations are intended to describe facts in the real world, they are nevertheless dependent on conventions and agreements between experts and practitioners. For chronic disorders of consciousness in particular, the terminology has proven problematic and controversial over the years. Novel research utilizing functional brain imaging (...) has demonstrated that a substantial number of patients retain their capabilities to communicate by brain activity even when they are incapable of classic verbal and nonverbal responses due to the dysfunction of their motor behavior. Moreover, thorough diagnostic assessments constitute the foundations for suitable rehabilitation measures. Thus, ethical arguments support the claim that the potential of emerging methods for communication via brain activity should be evaluated comprehensively in patients with chronic disorders of consciousness, once the technological methodology for this endeavor progresses to a reliable and affordable stage. (shrink)

The aim of this study was to examine to what extent patients remained silent to the health care system after they experienced abusive or wrongful incidents in health care. Female patients visiting a women’s clinic in Sweden (n = 530) answered the Transgressions of Ethical Principles in Health Care Questionnaire (TEP), which was constructed to measure patients’ abusive experiences in the form of staff’s transgressions of ethical principles in health care. Of all the patients, 63.6% had, at some point, experienced (...) staff’s transgressions of ethical principles, and many perceived these events as abusive and wrongful. Of these patients, 70.3% had remained silent to the health care system about at least one transgression. This silence is a loss of essential feedback for the health care system and should not automatically be interpreted as though patients are satisfied. (shrink)

The aim of this paper is to provide a conceptual framework that will help in understanding and evaluating, along social and ethical lines, the issue of killing day-old male chicks and two alternative directions of responsible innovations to solve this issue. The following research questions are addressed: Why is the killing of day-old chicks morally problematic? Are the proposed alternatives morally sound? To what extent do the alternatives lead to responsible innovation? The conceptual framework demonstrates clearly that there is a (...) moral “lock-in”, and why the killing of day-old chicks is indeed an issue. Furthermore, it is shown that both alternative directions address some important objections with regard to the killing of day-old chicks, but that they also raise new dilemmas. It also becomes clear that the framework enables and secures anticipation, reflection, deliberation with and responsiveness to stakeholders, the four dimensions of responsible innovation, in a structured way. (shrink)

The national standards for clinical ethics consultation set forth by the American Society for Bioethics and Humanities endorse an “ethics facilitation” approach, which characterizes the role of the ethicist as one skilled at facilitating consensus within the range of ethically acceptable options. To determine the range of ethically acceptable options, ASBH recommends the standard model of decision-making, which is grounded in the values of autonomy, beneficence, nonmaleficence, and justice. H. Tristram Engelhardt Jr. has sharply criticized the standard model for presuming (...) contentful moral claims in circumscribing the range of ethically acceptable options, which, he argues, cannot be rationally justified in a pluralistic context. Engelhardt’s solution is a secular clinical ethics based on a contentless principle of permission. The first part of this article lays out Engelhardt’s negative claim, that reason cannot establish contentful moral claims, and his positive claim, that secular clinical ethics ought to be based on a contentless principle of permission. The second part critiques these negative and positive claims. The purpose of this paper is to defend secular clinical ethics expertise—defined as the ability of ethicists to offer justified moral recommendations grounded in consensus positions endorsed by the American Society for Bioethics and Humanities—from the radical critiques of Engelhardt, who argues that no moral or metaphysical claims, and hence no bioethical consensus, can be rationally justified. Engelhardt’s critiques have caused some to worry that secular clinical ethics is in a state of theoretical crisis; this article concludes that Engelhardt’s view is an unstable basis for that worry. (shrink)

The mere means principle says it is impermissible to treat someone as merely a means to someone else’s ends. I specify this principle with two conditions: a victim is used as merely a means if the victim does not want the treatment by the agent and the agent wants the presence of the victim’s body. This principle is a specification of the doctrine of double effect which is compatible with moral intuitions and with a restricted kind of libertarianism. An extension (...) of this mere means principle, where not only using but also considering someone as merely a means is immoral, can explain and unify other deontological principles: doing versus allowing, partiality in imperfect duties of beneficence, and the asymmetry of procreational duties. A loop trolley dilemma is often presented as a counterexample of the mere means principle, but I argue that this dilemma generates a moral illusion, comparable to perceptual illusions. (shrink)

It is widely agreed that the view of informed consent found in the regulations and guidelines struggles to keep pace with the ever-advancing enterprise of human subjects research. Over the last 10 years, there have been serious attempts to rethink informed consent so that it conforms to our considered judgments about cases where we are confident valid consent has been given. These arguments are influenced by an argument from Gopal Sreenivasan, which apparently shows that a potential participant's consent to research (...) participation can be perfectly valid even if she fails to understand the risk-benefit profile of the study. I argue that Sreenivasan's argument fails. The set of clinical trials that is supposed to be ethical in the face of this kind of ignorance is empty. However, I argue that his argument is nonetheless instructive in allowing us to identify three important but neglected areas for future conceptual research on informed consent. I close by arguing that research on these identified questions promises to yield a defensible view of consent, lessen the burden of ambiguity on researchers attempting to obtain consent to research participation, and facilitate socially valuable research. (shrink)

Prompted by developments in human genetics, a recurrent bioethical question concerns a person’s ‘right to know’ and ‘right not to know’ about genetic information held that is intrinsically related to or linked to them. In this paper, we will revisit the claimed rights in relation to two particular test cases. One concerns the rights of the 500,000 participants in UK Biobank whose biosamples, already having been genotyped, will now be exome sequenced, and the other concerns the rights of pregnant women (...) who undergo non-invasive prenatal testing —a simple blood test that can reveal genetic information about both a foetus and its mother. This two-part paper is in four principal sections. First, we sketch the relevant features of our two test cases. Secondly, we consider the significance of recent legal jurisprudence in the UK and Singapore. Thirdly, we consider how, the jurisprudence apart, the claimed rights might be grounded. Fourthly, we consider the limits on the rights. We conclude with some short remarks about the kind of genetically aware society that we might want to be and how far there is still an opportunity meaningfully to debate the claimed rights. (shrink)

The American Journal of Bioethics, Volume 12, Issue 6, Page 48-49, June 2012.

Non-medical sex selection is premised on the notion that the sexes are not interchangeable. Studies of individuals who undergo sex selection for non-medical reasons, or who have a preference for a son or daughter, show that they assume their child will conform to the stereotypical roles and norms associated with their sex. However, the evidence currently available has not succeeded in showing that the gender traits and inclinations sought are caused by a “male brain” or a “female brain”. Therefore, as (...) far as we know, there is no biological reason why parents cannot have the kind of parenting experience they seek with a child of any sex. Yet gender essentialism, a set of unfounded assumptions about the sexes which pervade society and underpin sexism, prevents parents from realising this freedom. In other words, unfounded assumptions about gender constrain not only a child’s autonomy, but also the parent’s. To date, reproductive autonomy in relation to sex selection has predominantly been regarded merely as the freedom to choose the sex of one’s child. This paper points to at least two interpretations of reproductive autonomy and argues that sex selection, by being premised on gender essentialism and/or the social pressure on parents to ensure their children conform to gender norms, undermines reproductive autonomy on both accounts. (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)

ZusammenfassungIn 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)

Fulford’s discussion of ‘values-based practice’ as a model for medical ethics is deeply puzzling. First, it remains unclear what exactly he takes values to be or how tyhey can be based in clinical skills. Second, his proposal does not make it clear whose values these are supposed to be. I conclude that his attempt in effect to take the morality out of ethics fails.

Translational research in medicine requires researchers to identify the steps to transfer basic scientific discoveries from laboratory benches to bedside decision-making, and eventually into clinical practice. On a parallel track, philosophical work in ethics has not been obliged to identify the steps to translate theoretical conclusions into adequate practice. The medical ethicist A. Cribb suggested some years ago that it is now time to debate ‘the business of translational’ in medical ethics. Despite the very interesting and useful perspective on the (...) field of medical ethics launched by Cribb, the debate is still missing. In this paper, I take up Cribb’s invitation and discuss further analytic distinctions needed to base an ethics aiming to translate between theory and practice. (shrink)

Viewed in its entirety, moral philosophizing, and the moral behavior of people throughout history, presents a curious puzzle. On the one hand, interpersonal duties display a remarkably stable core content: morality the world over enjoins people to keep their word; refrain from violence, theft and cheating; and help those in need. On the other hand, the asserted motives that drive people’s moral actions evince a dazzling diversity: from empathy or sympathy, to practical or prudential reason, to custom and honor, cultural (...) identity, excellence and independence, faith and spirituality, narrative and beauty, and more besides. I term this twin phenomenon—a core of fixed moral duties driven by diverse motives—“moral motive pluralism.” In this article, I marshal evidence to show the prevalence of the phenomenon. Contrary to widespread assumptions, across generations and cultures, diverse motives drive different people to perform their moral duties. But despite this diversity, each different motive impels conscientious compliance with the same core moral duties. I argue this phenomenon undermines key types of evidence commonly employed to justify popular moral philosophies, and provides us with reason to seriously consider certain sorts of ethical theories—especially “functionalist” accounts of morality. (shrink)

Der Beitrag will der Frage nachgehen, ob innerhalb von Hospizen und Palliativstationen in Bezug auf typische Merkmale des „guten Sterbens“ jenseits von in der Literatur erhobenen Konsensen auch Dissense beobachtet werden können, wie Sterbeverläufe, die als nicht gut betrachtet werden, zu Wort kommen, und schließlich: welche ethisch beachtlichen normativen Konsequenzen sich daraus ergeben.Die Studie wird auf der Grundlage einer qualitativen Interviewstudie in der Befragung unterschiedlicher Akteursgruppen sowie im Vergleich dieser Gruppen durchgeführt.Artikuliert werden – auch dissentierende – Vorstellungen von einem guten (...) und einem schlechten Sterben, und zwar kaum von den Betroffenen und ihren Angehörigen selbst als vielmehr von den professionellen Akteuren. Die Ausprägung einer solchen Semantik hängt mit den Erfordernissen einer Praxis zusammen, die offenbar ein Rechenschaftsbedürfnis in Form von kommunikativer Vergewisserung evoziert.Eine abstrakte Bestimmung des „guten Sterbens“ steht in Gefahr, die kontextuellen Besonderheiten der damit verbundenen Praxis nicht mehr in den Blick zu bekommen, was zu in ethischer Hinsicht problematischen Situationen führen kann. (shrink)

It is very timely and highly important to think the relationship between theological and philosophical ethics. In this issue, Michael McCarthy et al. make a plea for a stronger dialogue...

Among bioethicists, and perhaps ethicists generally, the idea that we are obliged to respect autonomy is something of a shibboleth. Appeals to autonomy are commonly put to work to support legal and moral claims about the importance of consent, but they also feed a wider discourse in which the patient’s desires are granted a very high importance and medical paternalism is regarded as almost self-evidently indefensible.

Immunisation is offered to all age groups in the UK, but is mainly given to infants and school-age children. Such immunisation is not compulsory, in contrast to other countries, such as the United States. Levels of immunisation are generally very high in the UK, but the rates of immunisation vary with the public perception of the risk of side effects. This article discusses whether compulsory vaccination is acceptable by considering individual cases where parents have failed to give consent or have (...) explicitly refused consent for their children to be immunised. In particular, the rights of: a parent to rear his/her child according to his/her own standards; the child to receive health care, and the community to be protected from vaccine-preventable infectious disease are considered. The conclusion of the article is that compulsory vaccination cannot, with very few exceptions, be justified in the UK, in view of the high levels of population immunity which currently exist. (shrink)

Rapid growth in structural and functional brain research has led to increasing ethical discussion of what to do about incidental findings within the brains of healthy neuroimaging research participants that have potential health importance, but which are beyond the original aims of the study. This dilemma has been widely debated with respect to general neuroimaging research but has attracted little attention in the context of neuromarketing studies. In this paper, I argue that neuromarketing researchers owe participants the same ethical obligations (...) as other neuroimaging researchers. The financial resources available to neuromarketing firms and the social value of neuromarketing studies should command greater attention to the elucidation and management of incidental findings. However, this needs to be balanced against finite resources available within most public health systems. (shrink)

This paper argues that data-driven medicine gives rise to a particular normative challenge. Against the backdrop of a distinction between the good and the right, harnessing personal health data towards the development and refinement of data-driven medicine is to be welcomed from the perspective of the good. Enacting solidarity drives progress in research and clinical practice. At the same time, such acts of sharing could—especially considering current developments in big data and artificial intelligence—compromise the right by leading to injustices and (...) affecting concrete modes of individual self-determination. In order to address this potential tension, two key elements for ethical reflection on data-driven medicine are proposed: the controllability of information flows, including technical infrastructures that are conducive towards controllability, and a paradigm shift towards output-orientation in governance and policy. (shrink)

Medical Ethics has many unsung heros and heroines. Here we celebrate one of these and on telling part of her story hope to place modern medical ethics and bioethics in the UK more centrally within its historical and human contex.

Definition of the problem The reform of German guardianship law coming into force in 2023 will remove the term “well-being” from the law. This is intended to emphasise that the legal guardian should be guided by the subjective wishes of the person rather than by an objective understanding of well-being. This article analyses the understanding of well-being underlying the reformed guardianship law in comparison to common conceptions of well-being in philosophy and medical ethics, aiming to promote interdisciplinary understanding between ethics (...) and law. Arguments The justification for the reform emphasises that the law is based on a subjective understanding of well-being. However, this understanding does not correspond to philosophical subjective theories of well-being, according to which only things that a person desires can contribute to her well-being. In contrast, the guardianship law assumes that the fulfilment of certain wishes can lead to objective harm to the person and thus impair her well-being. Negative consequences for the objective well-being of a person are only relevant insofar as they indicate a limit to following current wishes that are based on a natural will and are not an expression of self-determination. Conclusion While the term “well-being” is removed from reformed guardianship law, the law implicitly contains an understanding of well-being comparable to a hybrid conception of well-being from a medical ethics perspective. According to this conception, fulfilment of a person’s wishes generally contributes to her well-being, although certain objective criteria are also taken into consideration. (shrink)

In the United States, disturbing concerns pertaining to both how putative bioethicists are perceived and the potential for the abuse of their power in connection with these perceptions compel close examination. This paper addresses these caveats by examining two fundamental and interrelated components in the image-construction of the ethicist: definitional and contextual. Definitional features reveal that perceptions and images of the ethicist are especially subject to distortion due to a lack of clarity as to the nature and qualifications of the (...) ethicist. Furthermore, the clinical, professional, political, academic, and linguistic contexts in which these ethicists are engaged are contexts of disquieting degrees of power. I argue that the lack of definitional clarity as to what constitutes an ethicist combined with the above volatile contexts together set the stage for the abuse of power on the part of ethicists. Throughout, I question the extent of self-critical analyses among ethicists, and, in view of these components in image-construction and their relationship to power, I challenge the degree of integrity within the field. In conclusion, I propose some areas for further investigation. (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)

Thirty-five current therapy clients, 47 former clients, and 42 college students with no therapy experience rated 27 items in terms of importance for inclusion in informed consent discussions. The current and former client samples rated information about inappropriate therapeutic techniques, confidentiality, and the risks of alternative treatments as most important, and information about the personal characteristics of the therapist and the therapist's degree as least important. The results of this study provide evidence for differential informed consent disclosure practices.

Neurosurgery is a topic that evokes many hopes and fears at the same time. One of these fears is concerned with the worry about losing one's identity. Taking this concern seriously, the article deals with the question: Can the concept of ‘personal identity’ be used successfully in normative considerations concerning neurosurgery? This question will be answered in three steps. First, a short introduction to the philosophical debate about personal identity is given. Second, a new theory of personal identity is presented. (...) This theory has two components. On the one hand, it explains the phenomenon of human existence through time. On the other hand, it demonstrates the normative concept of personal identity. The final step proves the explanatory power of the theory on the basis of a practical example, namely deep brain stimulation. It will be shown that personal identity alters quite easily, whereas human persistence is rather stable. The distinction between both concepts finally serves to develop a terminology that is able to structure normative debates very effectively. (shrink)

BackgroundPrecision medicine development is driven by the possibilities of next generation sequencing, information technology and artificial intelligence and thus, raises a number of ethical questions. Empirical studies have investigated such issues from the perspectives of health care professionals, researchers and patients. We synthesize the results from these studies in this review.MethodsWe used a systematic strategy to search, screen and assess the literature for eligibility related to our research question. The initial search for empirical studies in five data bases provided 665 (...) different records and we selected 92 of these publications for inclusion in this review. Data were extracted in a spreadsheet and categorized into different topics representing the views on ethical issues in precision medicine.ResultsMany patients and professionals expect high benefits from precision medicine and have a positive attitude towards it. However, patients and professionals also perceive some risks. Commonly perceived risks include: lack of evidence for accuracy of tests and efficacy of treatments; limited knowledge of patients, which makes informed consent more difficult; possible unavailability of access to precision medicine for underprivileged people and ethnic minorities; misuse of data by insurance companies and employers, potential of racial stigmatization due to genetic information; unwanted communication of incidental findings; changes in doctor-patient-relationship through focusing on data; and the problem that patients could feel under pressure to optimize their health.ConclusionsNational legislation and guidelines already minimize many risks associated with precision medicine. However, from our perspective some problems require more attention. Should hopes for precision medicine’s benefits be fulfilled, then the ethical principle of justice would require an unlimited access to precision medicine for all people. The potential for autonomous patients’ decisions must be greatly enhanced by improvements in patient education. Harm from test results must be avoided in any case by the highest possible data security level and communication guidelines. Changes in the doctor-patient relationship and the impact of precision medicine on the quality of life should be further investigated. Additionally, the cost-effectiveness of precision medicine should be further examined, in order to avoid malinvestment. (shrink)

No known cure exists for COVID-19, and medical practitioners are exhausted and at their wits’ end trying to find treatments that prevent patients from ending up in hospital or intensive care, or even dying. A variety of treatments tried by medical practitioners include standard registered medicine, investigational or so-called experimental, unapproved or preapproved medicines, emergency or compassionate-use authorised medicine and pre-market approved medicine. However, the medicines that can be accessed via each of these categories are at different stages of efficacy (...) testing and knowledge about adverse effects, dosages and risks. To obtain ethical and legal informed consent, medical practitioners must deal with a lot of medical uncertainty, and care must be taken to ensure that the patient understands the difference in risks they may be willing to take depending on the medicine’s stage of development. Often additional information is required to obtain ethical consent as opposed to legal consent. A purely legal approach to informed consent, especially when dealing with the medical uncertainties of health emergencies and pandemics, may lead to patients’ consent lacking in enough substance to be truly considered legal and ethical. Informed consent as respect for autonomy in this sense requires more than the patient’s explicit agreement or compliance with a certain treatment proposal. This article explains the difference in consent content attached to each different stage of a medicine’s development, especially considering the additional difficulties posed by obtaining truly informed consent during a pandemic with uncertain characteristics, treatment and solutions. (shrink)

Rule systems are used every day to share experience, pre-existing knowledge, beliefs and ethical rules, and to provide instructions for future action. This article expands and builds upon an approach pioneered by Julius M. Moravcsik to argue that ethics cannot be completely codified into a rigid set of rules, because any such set lacks a misapplication-correcting sensibility. Thus, an ethics that is transferred purely by means of a rule-set is incomplete and thus cannot be used reliably to guide future action. (...) The balancing sensibility is formed out of pre-existing expert knowledge and takes account of the limitations of rule-sets in specific contexts. Moravcsik’s approach is then expanded by incorporating it into a holistic framework for the analysis, guidance and development of actions to be taken to support the emergence, selection and implementation of solutions for a sustainable future. This approach has profound implications for managers and organisers in new or critical situations. (shrink)

Departing from theories of distributive justice and their relation with the distribution of health care within society, especially egalitarianism and libertarianism, this paper aims at demonstrating that the approach taken by the European Court of Justice regarding the application of the Internal Market principles (or the market freedoms) to the field of health care services has introduced new values which are more concerned with a libertarian view of health care. Moreover, the paper also addresses the question of how these new (...) values introduced by the Court may affect common principles of European health systems, such as equity and accessibility. (shrink)

This paper pertains to research works aiming at linking ethics and automated reasoning in autonomous machines. It focuses on a formal approach that is intended to be the basis of an artificial agent’s reasoning that could be considered by a human observer as an ethical reasoning. The approach includes some formal tools to describe a situation and models of ethical principles that are designed to automatically compute a judgement on possible decisions that can be made in a given situation and (...) explain why a given decision is ethically acceptable or not. It is illustrated on three ethical frameworks—utilitarian ethics, deontological ethics and the Doctrine of Double effect whose formal models are tested on ethical dilemmas so as to examine how they respond to those dilemmas and to highlight the issues at stake when a formal approach to ethical concepts is considered. The whole approach is instantiated on the drone dilemma, a thought experiment we have designed; this allows the discrepancies that exist between the judgements of the various ethical frameworks to be shown. The final discussion allows us to highlight the different sources of subjectivity of the approach, despite the fact that concepts are expressed in a more rigorous way than in natural language: indeed, the formal approach enables subjectivity to be identified and located more precisely. (shrink)

The traditional distinction between ordinary, i.e., obligatory means to preserve life and extraordinary, non-obligatory means is an especially useful tool for HECs in today's secular pluralist health care system, because it gives factors that can override the prima facie good of preserving the patient's life. I first indicate the need for such a tool. I then demonstrate the present misunderstanding of the distinction and give its proper understanding. Finally, I show the applicability of the distinction for HEC deliberations about three (...) important types of cases: the conscious, irreversibly but not terminally ill patient who requests cessation of curative treatment; the provision of artificial nutrition and hydration to permanently vegetative patients; and the allotment of intensive care and other scarce medical resources. (shrink)

BackgroundHealthcare is permeated by phenomena of vulnerability and their ethical significance. Nonetheless, application of this concept in healthcare ethics today is largely confined to clinical research. Approaches that further elaborate the concept in order to make it suitable for healthcare as a whole thus deserve renewed attention.MethodsConceptual analysis.ResultsTaking up the task to make the concept of vulnerability suitable for healthcare ethics as a whole involves two challenges. Firstly, starting from the concept as it used in research ethics, a more detailed (...) characterization and systematization of the different realms of human abilities and the various ways in which these realms contain vulnerability is to be established. Secondly, at the same time, the sought-after concept of vulnerability should avoid picturing the relation between healthcare recipient and provider as a relation between a dependent individual in need and another individual capable of providing all the help necessary. An adequate concept of vulnerability should enable one to understand when and in which respects care providers may be vulnerable as well. Philosophical accounts of vulnerability can help to meet both of these challenges.ConclusionsPhilosophical accounts of vulnerability can help to make the concept of vulnerability suitable for healthcare ethics as a whole. They come with a price, though. While the ethical role of vulnerability in medical ethics usually is to signify states of affairs that are to be diminished or overcome, philosophical accounts introduce forms of vulnerability that are regarded as valuable. Further analyzing and systematizing forms and degrees of vulnerability thus comprises the task to distinguish between amounts and types of vulnerability that can count as valuable, and amounts and types of vulnerability that are to be alleviated. (shrink)