Beauchamp and Childress’ biomedical principlism is nearly synonymous with medical ethics for most clinicians. Their four principles are theoretically derived from the “common morality”, a universal cache of moral beliefs and claims shared by all morally serious humans. Others have challenged the viability of the common morality, but none have attempted to explain why the common morality makes intuitive sense to Western ethicists. Here I use the work of Charles Taylor to trace how events in the Western history of ideas (...) made the common morality seem plausible and yet, ironically, underscore the cultural particularity of the so-called common morality. I conclude that the supposedly universal common morality is actually quite culturally contained. Importantly, this should give us pause about the global authority of principlism and Beauchamp and Childress’ claim to a global bioethics project. (shrink)

Digitization of a health record changes its accessibility. An electronic health record can be accessed by multiple authorized users. Health information from EHRs contributes to learning healthcare systems’ development. The objective of this systematic review is to answer a question: What are ethical issues concerning research using EHRs in the literature? We searched Medline Ovid, Embase and Scopus for publications concerning ethical issues of research use of EHRs. We employed the constant comparative method to retrieve common ethical themes. We descriptively (...) summarized empirical studies. The study reveals the breadth, depth, and complexity of ethical problems associated with research use of EHRs. The central ethical question that emerges from the review is how to manage access to EHRs. Managing accessibility consists of interconnected and overlapping issues: streamlining research access to EHRs, minimizing risk, engaging and educating patients, as well as ensuring trustworthy governance of EHR data. Most of the ethical problems concerning EHR-based research arise from rapid cultural change. The framing of concepts of privacy, as well as individual and public dimensions of beneficence, are changing. We are currently living in the middle of this transition period. Human emotions and mental habits, as well as laws, are lagging behind technological developments. In the medical tradition, individual patient’s health has always been in the center. Transformation of healthcare care, its digitalization, seems to have some impacts on our perspective of health care ethics, research ethics and public health ethics. (shrink)

The Stoics considered that in order to die well, one must previously have lived and not merely existed, an assertion which will not be contested in this paper. The question raised here is whether an individual whose life expectancy is jeopardized by serious illness or whose life has not been lived to the ‘full’ for whatever reason should have to abandon all hope or, alternately, whether that life could still somehow be saved. One clear obstacle to achieving this stems from (...) moral character, given that moral character is an element which conditions an individual’s moral behaviour, as pointed out by Beauchamp and Childress and particularly Pellegrino and Thomasma. The transformation of moral character requires time and effort but the testimonies of patients who have given their lives a radical new direction upon being diagnosed with a serious illness seem to show the existence of a peculiar phenomenon of moral catharsis. In this paper we attempt to illustrate that this alleged phenomenon is not the result of a kind of cataleptic impression but rather the result of a dialectic and narrative process, during which a first hope of healing is dashed, unveiling a new sense in the illness. Its fulfillment provides the patient with a final hope. (shrink)

Over the past decades, great strides have been made to professionalize and increase access to transgender medicine. As the evidence base grows and conceptualizations regarding gender dysphoria/gender incongruence evolve, so too do ideas regarding what constitutes good treatment and decision-making in transgender healthcare. Against this background, differing care models arose, including the ‘Standards of Care’ and the so-called ‘Informed Consent Model’. In these care models, ethical notions and principles such as ‘decision-making’ and ‘autonomy’ are often referred to, but left unsubstantiated. (...) This not only transpires into the consultation room where stakeholders are confronted with many different ethical challenges in decision-making, but also hampers a more explicit discussion of what good decision-making in transgender medicine should be comprised of. The aim of this paper is to make explicit the conceptual and normative assumptions regarding decision-making and client autonomy underpinning the ‘Standards of Care’ and ‘Informed Consent Model’ currently used in transgender care. Furthermore, we illustrate how this elucidation aids in better understanding stakeholders’ ethical challenges related to decision-making. Our ethical analysis lays bare how distinct normative ambiguities in both care models influence decision-making in practice and how foregrounding one normative model for decision-making is no moral panacea. We suggest that the first steps towards good decision-making in gender-affirming medical care are the acknowledgement of its inherent normative and moral dimensions and a shared, dialogical approach towards the decision-making process. (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)

In principle, all patients deserve to receive optimal medical treatment equally. However, in situations in which there is scarcity of time or resources, medical treatment must be prioritized based on a triage. The conventional guidelines of medical triage mandate that treatment should be provided based solely on medical necessity regardless of any non-medical value-oriented considerations. This study empirically examined the influence of value-oriented considerations on medical triage decision–making. Participants were asked to prioritize medical treatment relating to four case scenarios of (...) an emergency situation resulting from a car collision. The cases differ by situational characteristics pertaining to the at-fault driver, which were related to culpability attribution.In three case scenarios most participants gave priority to the most severely injured individual, unless the less severely injured individual was their brother. Nevertheless, in the aftermath of a vehicle-ramming terror attack most participants prioritized the less severely injured individual.Our findings indicate that when caregivers are presented with concrete highly conflictual triage situations their choices may be based on value-oriented considerations related to contextual characteristics of the emergency situation. Philosophical and practical ramifications of our findings are discussed. (shrink)

One barrier to optimal pain management in the neonatal intensive care unit is how the healthcare community perceives, and therefore manages, neonatal pain. In this paper, we emphasise that healthcare professionals not only have a professional obligation to care for neonates in the NICU, but that these patients are intrinsically worthy of care. We discuss the conditions that make neonates worthy recipients of pain management by highlighting how neonates are vulnerable to pain and harm, and completely dependent on others for (...) pain management. We argue for a relational account of ethical decision-making in the NICU by demonstrating how an increase in vulnerability and dependence may be experienced by the healthcare community and the neonate’s family. Finally, an ethical framework for decisions around neonatal pain management is proposed, focussing on surrogate decision-making and the importance of compassionate action through both a reflective and an affective empathy. As empathy can be highly motivating against pain, we propose that, in addition to educational programs that raise awareness and knowledge of neonatal pain and pain management, healthcare professionals must cultivate empathy in a collective manner, where all members of the NICU team, including parents, are compassionate decision-makers. (shrink)

One of the major concerns of advocates of common morality is that respect for cultural diversity may result in moral relativism. On their part, proponents of culturally responsive bioethics are concerned that common morality may result in moral imperialism because of the asymmetry of power in the world. It is in this context that critics argue that global bioethics is impossible because of the difficulties to address these two theoretical concerns. In this paper, I argue that global bioethics is possible (...) if we adopt a culturally responsive and self-critical attitude towards our moral values and those of others. I use the example of women’s reproductive autonomy in indigenous African culture to show that the difference between the leading Euro-American and indigenous African construal of autonomy is that the former ascribes greater weight on individual self-determination while the latter emphasizes responsibilities towards the community. One develops dignity in virtue of their capacity for communing with others. Hence, women have rights, but as members of the community, they also have obligations including the duty to procreate. The involvement of the family in reproductive decisions does not contravene women’s dignity and human rights. In applying the principle of autonomy in this communitarian context, one has to be sensitive to these ontological and moral specificities. The aim of global bioethics should not be to reach common grounds at all costs; any common norms should be the result of a negotiated democratic dialogue between cultures and not the result of imposition by the preponderant culture. (shrink)

Patients with borderline personality disorder sometimes request to be admitted to hospital under compulsory care, often under the argument that they cannot trust their suicidal impulses if treated voluntarily. Thus, compulsory care is practised as a form of Ulysses contract in such situations. In this normative study we scrutinize the arguments commonly used in favour of such Ulysses contracts: the patient lacking free will, Ulysses contracts as self-paternalism, the patient lacking decision competence, Ulysses contracts as a defence of the authentic (...) self, and Ulysses contracts as a practical solution in emergency situations. In our study, we have accepted consequentialist considerations as well as considerations of autonomy. We conclude that compulsory care is not justified when there is a significant uncertainty of beneficial effects or uncertainty regarding the patient’s decision-making capacity. We have argued that such uncertainty is present regarding BPD patients. Hence, Ulysses contracts including compulsory care should not be used for this group of patients. (shrink)

Defensive medicine has become pervasive. Defensive medicine is often thought of as a systems issue, the inevitable result of an adversarial malpractice environment, with consequent focus on system-responses and tort reform. But defensive medicine also has ethical and professionalism implications that should be considered beyond the need for tort reform. This article examines defensive medicine from an ethics and professionalism perspective, showing how defensive medicine is deeply problematic. First, a definition of defensive medicine is offered that describes the essence of (...) defensive practice: clinical actions with the goal of protecting the clinician against litigation or some adverse outcome. Ethical arguments against defensive medicine are considered: defensive medicine is deceptive and undermines patient autonomy; defensive medicine subjugates patient interests to physician interests and violate fiduciary obligations; defensive medicine exposes patients to harm without benefit; defensive medicine undermines trust in the profession; and defensive medicine violates obligations of justice. Possible arguments in favor of defensive medicine are considered and refuted. Defensive practice is therefore unethical and unprofessional, and should be viewed as a challenge for medical ethics and professionalism. (shrink)

Empathic concern is essential to our social lives because it motivates helping behavior. It has, however, well-known shortcomings such as its limitation in scope. Here, we highlight a further shortcoming of empathic concern: it contributes little to understanding the relevant features of complex social situations, and unaided by further cognitive inputs, likely fails to produce effective helping. We then elaborate on the conditions needed for an accurate assessment of others’ situations: the ability to pay attention and try to understand others (...) for their own sake. We explain that when combining these abilities with the valuing aspect of empathic concern, we obtain “availability”, an understudied mental state which plays a crucial role in helping motivation. We provide a detailed definition of that notion and show how availability can be trained and exercised by health professionals in order to improve their care and relationships with patients. (shrink)

The study of the neuroscience and genomics of mental illness are increasingly intertwined. This is mostly due to the translation of medical technologies into psychiatry and to technological convergence. This article focuses on psychosis. I argue that the convergence of neuroscience and genomics in the context of psychosis is morally problematic, and that ethics scholarship should go beyond the identification of a number of ethical, legal, and social issues. My argument is composed of two strands. First, I argue that we (...) should respond to technological convergence by developing an integrated, patient-centred approach focused on the assessment of individual vulnerabilities. Responding to technological convergence requires that we integrate insights from several areas of ethics, translate bioethical principles into the mental health context, and proactively try to anticipate future ethical concerns. Second, I argue that a nuanced understanding of the concept of vulnerability might help us to accomplish this task. I borrow Florencia Luna’s notion of ‘layers of vulnerability’ to show how potential harms or wrongs to individuals who experience psychosis can be conceptualised as stemming from different sources, or layers, of vulnerability. I argue that a layered notion of vulnerability might serve as a common ground to achieve the ethical integration needed to ensure that biomedical innovation can truly benefit, and not harm, individuals who suffer from psychosis. (shrink)

The paper presents an account of suffering as a multi-level phenomenon based on concepts such as mood, being-in-the-world and core life value. This phenomenological account will better allow us to evaluate the hardships associated with dying and thereby assist health care professionals in helping persons to die in the best possible manner. Suffering consists not only in physical pain but in being unable to do basic things that are considered to bestow meaning on one’s life. The suffering can also be (...) related to no longer being able to be the person one wants to be in the eyes of others, to losing one’s dignity and identity. These three types of suffering become articulated by a narrative that holds together and bestows meaning on the whole life and identity of the dying person. In the encounter with the patient, the health-care professional attempts to understand the suffering-experience of the patient in an empathic and dialogic manner, in addition to exploring what has gone wrong in the patient’s body. Matters of physician assisted suicide and/or euthanasia—if it should be legalized and if so under which conditions—need to be addressed by understanding the different levels of human suffering and its positive counterpart, human flourishing, rather than stressing the respect for patient autonomy and no-harm principles, only. In this phenomenological analysis the notions of vulnerability and togetherness, ultimately connecting to the political-philosophical issues of how we live together and take care of each other in a community, need to be scrutinized. (shrink)

A clinical ethics fit for the Anthropocene—our current geological era in which human activity is the primary determinant of environmental change—needs to incorporate environmental ethics to be fit for clinical practice. Conservationist Aldo Leopold’s essay ‘The Land Ethic’ is probably the most widely-cited source in environmental philosophy; but Leopold’s work, and environmental ethics generally, has made little impression on clinical ethics. The Land Ethic holds that “A thing is right when it tends to preserve the integrity, stability, and beauty of (...) the biotic community. It is wrong when it tends otherwise.” I argue that a Land Ethic helps to re-frame problems in clinical ethics that more common philosophical approaches struggle to handle, and that it can be incorporated into clinical ethics without succumbing to “environmental fascism”. I motivate viewing problems in clinical ethics from the perspective of the ‘integrity of the biotic community’, then illustrate how this perspective can offer guidance where more commonly-invoked theories—such as consequentialism and Kantian-inspired approaches—struggle, using antimicrobial resistance in nosocomial infection as a case study. The Land Ethic equips us to understand human values as arising within and inseparable from a social-ecological context, and by treating communities as valuable in themselves rather than just through the aggregate welfare of their individual participants, we can avoid problems with the ‘repugnant conclusion’ and utility monster that plague utilitarian accounts. (shrink)

The global increase in patients with chronic conditions has led to increased interest in ethical issues regarding such conditions. A basic biomedical principle—respect for autonomy—is being reexamined more critically in its clinical implications. New accounts of this basic principle are being proposed. While new accounts of respect for autonomy do underpin the design of many public programs and policies worldwide, addressing both chronic disease management and health promotion, the risk of applying such new accounts to clinical setting remain understudied. However, (...) the application of new accounts of respect for autonomy to clinical settings could support disrespectful attitudes toward or undue interference with patients with chronic conditions. Reconsidering autonomy and respect using Kantian accounts, this paper proposes respect for persons as an alternative basic bioethical principle to respect for autonomy. Unlike the principle of respect for persons in the Belmont Report, our principle involves respecting any patient’s decisions, behaviors, emotions, or life-style regardless of his or her “autonomous” capabilities. Thus, attitudes toward patients should be no different irrespective of the assessment of their decisional or executive capabilities. (shrink)

The ethics of human enhancement has been a hotly debated topic in the last 15 years. In this debate, some advocate examining science fiction stories to elucidate the ethical issues regarding the current phenomenon of human enhancement. Stories from science fiction seem well suited to analyze biomedical advances, providing some possible case studies. Of particular interest is the work of screenwriter Andrew Niccol, which often focuses on ethical questions raised by the use of new technologies. Examining the movie In Time, (...) the aim of this paper is to show how science fiction can contribute to the ethical debate of human enhancement. In Time provides an interesting case study to explore what could be some of the consequences of radical life-extension technologies. In this paper, we will show how arguments regarding radical life-extension portrayed in this particular movie differ from what is found in the scientific literature. We will see how In Time gives flesh to arguments defending or rejecting radical life-extension. It articulates feelings of unease, alienation and boredom associated with this possibility. Finally, this article will conclude that science fiction movies in general, and In Time in particular, are a valuable resource for a broad and comprehensive debate about our coming future. (shrink)

The perspectives of the dominant Western ethical theories, have dominated the concepts of autonomy and informed consent for many years. Recently this dominant understanding has been challenged by ethics of care which, although, also emanates from the West presents a more nuanced concept: relational autonomy, which is more faithful to our human experience. By paying particular attention to relational autonomy, particularity and Process approach to ethical deliberations in ethics of care, this paper seeks to construct a concept of informed consent (...) from the perspective of ethics of care which is here called relational autonomy-in-informed consent. Thus, providing a broader theoretical basis for informed consent beyond the usual theoretical perspectives that are particularly Western. Care ethics provides such a broader basis because it appeals to a global perspective that encompasses lessons from other cultures, and this will help to enrich the current ideas of bioethics principles of autonomy and informed consent. This objective will be achieved by exploring the ethics of care emphasis on relationships based on a universal experience of caring; and by contrasting its concept of autonomy as relational with the understanding of autonomy in the approaches of the dominant moral theories that reflect rational, individualistic, and rights-oriented autonomy of the American liberalism. (shrink)

The Declaration of Geneva is one of the core documents of medical ethics. A revision process was started by the World Medical Association in 2016. The WMA has also used this occasion to examine how the Declaration of Geneva is used in countries throughout the world by conducting a survey of all WMA constituent members. The findings are highly important and raise urgent questions for the World Medical Association and its National Medical Associations : The Declaration of Geneva is only (...) rarely used as an oath text despite the fact that physicians’ oaths are generally widespread. This is not consistent with the intention and claim of the Declaration of Geneva. The article then discusses three questions. Should there be one single binding oath? Which organization should be responsible for such an oath? Which oath is the most obvious candidate? In a globalized world and despite all cultural diversity, the medical profession should have one core moral basis which is binding for physicians all over the world. The most obvious candidate for an oath incorporating this moral basis is the Declaration of Geneva. (shrink)

The article raises the issue of ‘the right to be ill’, formulated by Tadeusz Kielanowski, a Polish physician and humanist. According to him, the right to health should be supplemented by the principle which would serve the protection of people with diseases or disabilities. One-sided interpretation of ‘the right to health’ may result in various forms of intolerance and discrimination. This paper presents what dangers Kielanowski recognized and explains why his approach was considered to be a novelty; what the idea (...) of ‘the right to be ill’ is, how the need for it is substantiated. This idea is considered in the context of human rights and it constitutes a starting point for the reflection on social phenomena connected with medicine. Taking into account the changes in medical ethics and culture which have taken place in the recent decades the question has been asked—is it worth talking about the right to be ill these days? Giving positive answers to this question, the spheres and issues that have been presented can be analyzed and assessed from the perspective of the right to be ill. (shrink)

This article discusses the challenging context that health care professionals are confronted with, and the impact of this context on their emotional experiences. Care ethics considers emotions as a valuable source of knowledge for good care. Thinking with care ethical theory and looking through a care ethical lens at a practical case example, the authors discern reflective questions that shed light on a care ethical approach toward the role of emotions in care practices, and may be used by practitioners and (...) facilitators for care ethical reflection on similar cases, in the particular and concrete context where issues around emotional experiences arise. The authors emphasize the importance of allowing emotions to exist, to acknowledge them and to not repress them, so that they can serve as a vehicle for ethical behavior in care practices. They stress the difference between acknowledging emotions and expressing them limitlessly. Formational practices and transformational research practices are being proposed to create moral space in care institutions and to support health care professionals to approach the emotionally turbulent practices they encounter in a way that contributes to good care for all those involved. (shrink)

This paper focuses on a hypothetical case that represents an intervention request familiar to those who work with individuals with intellectual disability. Stacy has autism and moderate intellectual disability. Her parents have requested treatment for her hand flapping. Stacy is not competent to make her own treatment decisions; proxy consent is required. There are three primary justifications for proxy consent: the right to an open future, substituted judgment, and the best interest standard. The right to an open future justifies proxy (...) consent on the assumption of future autonomy whereas substituted judgment justifies proxy consent via reference to past autonomy. Neither applies. Stacy has not been, nor will she be, competent to make her own treatment decisions. The best interest standard justifies proxy consent on the grounds of beneficence. It is unlikely that hand flapping harms Stacy. None of the three primary means of justifying proxy consent apply to Stacy’s case. (shrink)

‘DU bist Radio’ (DBR) is an award winning [DBR has been awarded with the “Catholic Media Award of the German Bishops Conference, Prädikat WERTvoll” (2011), the Suisse “Media Prize Aargau/Solothurn” (2010), the German “Alternative Media Award” (2009) and was nominated for the “Prix Europa” (2009)] monthly radio format that goes on air on three Swiss radio stations. The purpose of this program which was first broadcast in 2009 is the development of a new media format which—without applying any journalistic (or (...) other) filter and influence—conveys authenticity of expression amongst society’s most vulnerable fellow citizens such as patients, clients and the socially deprived. So-called marginal groups are encouraged to speak for themselves, as a possible paradigm case for encouraging the inclusion of patients’ and relatives’ “unfiltered” voices in general and in clinical ethics as well. Before handing over the microphone to the groups in focus, a team of journalists, educated in medical ethics, over a period of 4 days, teaches them on-site radio skills and craft. Once this task is completed and the actual production of the broadcast begins, the media crew does not exert any influence whatsoever on the content of the 1-h program. Thus, the final product is solely created and accounted for by the media-inexperienced participants, leading to unforeseen and often surprising results. It is discussed that the DBR approach of fostering authenticity of expression can serve as an enhancement to today’s respect and autonomy oriented field of medical ethics. (shrink)

Respect for autonomy is typically considered a key reason for allowing physician assisted suicide and euthanasia. However, several recent papers have claimed this to be grounded in a misconception of the normative relevance of autonomy. It has been argued that autonomy is properly conceived of as a value, and that this makes assisted suicide as well as euthanasia wrong, since they destroy the autonomy of the patient. This paper evaluates this line of reasoning by investigating the conception of valuable autonomy. (...) Starting off from the current debate in end-of-life care, two different interpretations of how autonomy is valuable is discussed. According to one interpretation, autonomy is a personal prudential value, which may provide a reason why euthanasia and assisted suicide might be against a patient’s best interests. According to a second interpretation, inspired by Kantian ethics, being autonomous is unconditionally valuable, which may imply a duty to preserve autonomy. We argue that both lines of reasoning have limitations when it comes to situations relevant for end-of life care. It is concluded that neither way of reasoning can be used to show that assisted suicide or euthanasia always is impermissible. (shrink)

This paper aims to critique the phenomenon of advanced patient autonomy and choice in healthcare within the specific context of self-testing devices. A growing number of self-testing medical devices are currently available for home use. The premise underpinning many of these devices is that they assist individuals to be more autonomous in the assessment and management of their health. Increased patient autonomy is assumed to be a good thing. We take issue with this assumption and argue that self-testing provides a (...) specific example how increased patient autonomy and choice within healthcare might not best serve the patient population. We propose that current interpretations of autonomy in healthcare are based on negative accounts of liberty to the detriment of a more relational understanding. We also propose that Kantian philosophy is often applied to the healthcare arena in an inappropriate manner. We draw on the philosophical literature and examples from the self-testing process to support these claims. We conclude by offering an alternative account of autonomy based on the interrelated concepts of relationality, care and responsibility. (shrink)

With the prevalence of complementary and alternative medicine (CAM) increasing in western societies, questions of the ethical justification of these alternative health care approaches and practices have to be addressed. In order to evaluate philosophical reasoning on this subject, it is of paramount importance to identify and analyse possible arguments for the ethical justification of CAM considering contemporary biomedical ethics as well as more fundamental philosophical aspects. Moreover, it is vital to provide adequate analytical instruments for this task, such as (...) separating ‘CAM as belief system’, and ‘CAM as practice’, Findings show that beneficence and non-maleficence are central issues for an ethical justification of CAM as practice, while freedom of thought and religion are central to CAM as belief system. Many justification strategies have limitations and qualifications that have to be taken into account. Singularly descriptive premises in an argument often prove to be more problematic than universal ethical principles. Thus, non-ethical issues related to a general philosophical underpinning - e.g. epistemology, semantics, and ontology - are highly relevant for determining a justification strategy, especially when strong metaphysical assumptions are involved. Even if some values are shared with traditional biomedicine, axiological differences have to be considered as well. Further research should be done about specific CAM positions. These could be combined with applied qualitative social research methods. (shrink)

We often assume that hypothetical approval – either in the form of preferences or consent – under ideal conditions adds to the legitimacy of an arrangement or act. I want to show that this assumption, reasonable as it may seem, will also give rise to ethical problems. I focus on three problem areas: prudence, euthanasia and coercive psychiatric treatment. If we are to count as prudentially or morally␣relevant those preferences you would have if you were informed and rational, we will (...) run into difficulties in all these areas if your actual and rational preferences are at variance with each other. In the prudential sphere we may question the personal value of satisfying preferences that a person does not actually have. In this case our problem concerns the point of satisfying a rational preference in conflict with an actual one. In the cases of euthanasia and coercive care it concerns instead whether it would be morally right to do such a thing. I doubt there is a simple solution to our problem. In this paper at most I prepare the way for a solution or for wiser decisions in the hard cases, by pointing out what they will have to deal with. (shrink)

Bioethical research has tended to focus on theoretical discussion of the principles on which the analysis of ethical issues in biomedicine should be based. But this discussion often seems remote from biomedical practice where researchers and physicians confront ethical problems. On the other hand, published empirical research on the ethical reasoning of health care professionals offer only descriptions of how physicians and nurses actually reason ethically. The question remains whether these descriptions have any normative implications for nurses and physicians? In (...) this article, we illustrate an approach that integrates empirical research into the formulation of normative ethical principles using the moral-philosophical method of Wide Reflective Equilibrium (WRE). The research method discussed in this article was developed in connection with the project ‘Bioethics in Theory and Practice’. The purpose of this project is to investigate ethical reasoning in biomedical practice in Denmark empirically. In this article, we take the research method as our point of departure, but we exclusively discuss the theoretical framework of the method, not its empirical results. We argue that the descriptive phenomenological hermeneutical method developed by Lindseth and Norberg (2004) and Pedersen (1999) can be combined with the theory of WRE to arrive at a decision procedure and thus a foundation for the formulation of normative ethical principles. This could provide health care professionals and biomedical researchers with normative principles about how to analyse, reason and act in ethically difficult situations in their practice. We also show how to use existing bioethical principles as inspiration for interpreting the empirical findings of qualitative studies. This may help researchers design their own empirical studies in the field of ethics. (shrink)

In contemporary liberal ethics patient autonomy is often interpreted as the right to self-determination: when it comes to treatment decisions, the patient is given the right to give or withhold informed consent. This paper joins in the philosophical and ethical criticism of the liberal interpretation as it does not regard patient autonomy as a right, rule or principle, but rather as a practice. Patient autonomy, or so I will argue, is realised in the concrete activities of day-to-day health care, in (...) the material and technological context of care, in arrangements of health care institutions, in the physical training of people with disabilities, as well as in the concrete activities of care-giving. This move from conversations in the consultation room to other sites and situations in the practice of care takes seriously the empirical reality of medical care and intends to show that patient autonomy is practically realised in a much richer and more creative way than most ethical theory seems to assume. (shrink)

Enhancement of autonomous choice may be considered as an important reason for facilitating the use of genetic tests such as preimplantation genetic diagnosis. The principle of respect for autonomy is a crucial component not only of Western liberal traditions but also of Western bioethics. This is especially so in bioethical discussions and analyses of clinical encounters within medicine. On the basis of an analysis of qualitative research interviews performed with British, Italian and Swedish geneticists and gynaecologists on ethical aspects of (...) preimplantation genetic diagnosis, the plausibility of the notion of autonomy within reproductive medicine is discussed. The analysis of interviews indicates not only that there is a gap between theoretical discussions and concrete practice, but also that an increase in choice — paradoxically — can hamper couples' choice. (shrink)

The method of reflective equilibrium is well known within the domain of moral philosophy, but hardly discussed as a method in professional ethics education. We argue that an interpersonal version of RE is very promising for professional ethics education. We offer several arguments to support this claim. The first group of arguments focus on a changed practice that is more team-oriented, inter-professional and aims at shared decision-making with patients and clients. The second group of arguments relate to the core aim (...) of professional ethics education, namely to stimulate critical moral reflection. This central aim is a core professional moral competence that entails both a dialogical approach to practice and one’s own moral beliefs as well as a more detached viewpoint on practice, reflection on types of cases and one’s attitude as a professional in practice. (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)

There are increasing calls for rejecting the ‘dead donor’ rule and permitting ‘organ donation euthanasia’ in organ transplantation. I argue that the fundamental problem with this proposal is that it would bestow more worth on the organs than the donor who has them. What is at stake is the basis of human equality, which, I argue, should be based on an ineliminable dignity that each of us has in virtue of having a rational nature. To allow mortal harvesting would be (...) to make our worth contingent upon variable quality of life of judgments that can only be based on properties that come in degrees. Thus, rejecting the ‘dead donor’ rule comes at the expense of our egalitarian principles with respect to the value each individual human life has in relation to the protections against killing. (shrink)

Innovations permeate healthcare settings on an ever-increasing scale. Health technology innovations impact our perceptions and experiences of health, care, disease, etc. Because of the fast pace these HTIs are being introduced in different healthcare settings, there is a growing societal consensus that these HTIs need to be governed by ethical reflection. This paper reports a systematic review of argument-based literature which focused on articles reporting on ethical frameworks to screen or evaluate HTIs. To do this a four step methodology was (...) followed: Literature search conducted in five electronic literature databases; Identification of relevant articles; Development of data-extraction tool to analyze the included articles; Analysis, synthesis of data and reporting of results. Fifty-seven articles were included, each reporting on a specific ethical framework. These ethical frameworks existed out of characteristics which were grouped into five common ones: Motivations for development and use of frameworks; Objectives of using frameworks; Specific characteristics of frameworks ; Ethical approaches and concepts used in the frameworks; Methods to use the frameworks. Although this multiplicity of ethical frameworks shows an increasing importance of ethically analyzing HTIs, it remains unclear what the specific role is of these analyses. An ethics of caution, on which ethical frameworks rely, guides HTIs in their design, development, implementation, without questioning their technological paradigm. An ethics of desirability questions this paradigm, without guiding HTIs. In the end, a place needs to be found in-between, to critically assess HTIs. (shrink)

An increasing number of people seek medical attention for mild cognitive symptoms at older age, worried that they might develop Alzheimer’s disease. Some clinical practice guidelines suggest offering biomarker testing in such cases, using a brain scan or a lumbar puncture, to improve diagnostic certainty about Alzheimer’s disease and enable an earlier diagnosis. Critics, on the other hand, point out that there is no effective Alzheimer treatment available and argue that biomarker tests lack clinical validity. The debate on the ethical (...) desirability of biomarker testing is currently polarized; advocates and opponents tend to focus on their own line of arguments. In this paper, we show how the method of reflective equilibrium can be used to systematically weigh the relevant arguments on both sides of the debate to decide whether to offer Alzheimer biomarker testing. In the tradition of RE, we reflect upon these arguments in light of their coherence with other argumentative elements, including relevant facts, ethical principles, and theories on societal ideals or relevant concepts, such as autonomy. Our stance in the debate therefore rests upon previously set out in-depth arguments and reflects a wide societal perspective. (shrink)

In this paper, we explore how the definition of life takes on an essential character in the ethical debates around health technologies, with life thus being manufactured in the tensions and conflicts around the use of such artefacts and devices. We introduce concepts from science and technology studies to approach bioethics, overcoming the dualistic conception that separates the natural and the technological and questioning the dominant rationality that divides life into dualities. Drawing on two research projects in which we have (...) been involved in recent years, one regarding biobanks and the other regarding social care robots, we explore how the ethical discussions about biobanks and robots imply particular notions of life. We argue that the contemporary epistemic category of life is a manufactured life in which various rationalities coexist: one rationality based on a separation between the technological and the human, focused on pragmatism and functionalities that tend towards a dualized notion of life divided into qualified and non-qualified life, and another rationality based on a non-essentialist ontology, focused on the mediating role of health technologies, that entails a distributed life appearing as a precarious effect of a network. Each of these rationalities allows the emergence of different issues and ethical concerns, thus enriching the bioethical debate. (shrink)

Can autonomous systems replace humans in the performance of their activities? How does the answer to this question inform the design of autonomous systems? The study of technical systems and their features should be preceded by the study of the activities in which they play roles. Each activity can be described by its overall goals, governing norms and the intermediate steps which are taken to achieve the goals and to follow the norms. This paper uses the activity realist approach to (...) conceptualize autonomous systems in the context of human activities. By doing so, it first argues for epistemic and logical conditions that illustrate the limitations of autonomous systems in tasks which they can and cannot perform, and then, it discusses the ramifications of the limitations of system autonomy on the design of autonomous systems. (shrink)

The use of genomic selection in agricultural animal breeding is in academic literature generally considered an ethically unproblematic development, but some critical views have been offered. Our paper shows that an important preliminary question for any ethical evaluation of genomic selection is how the scope of discussion should be set, that is, which ethical issues and perspectives ought to be considered. This scope is determined by three partly overlapping choices. The first choice is which ethical concepts to include: an ethical (...) discussion of genomic selection approaches may draw on concepts central to applied ethics, but some critical views have been based on concepts from critical animal studies and continental philosophy. A related choice is to what extent discussion should focus on new ethical issues raised or on existing ethical issues that will be ameliorated, perpetuated or aggravated by an innovation in genomic selection. The third choice is to treat an innovation in genomic selection either as a technique on itself or as a part of specific practices. We argue that ethical discussion should not limit attention to new issues or ignore the implications of particular ways of applying genomic selection in practice, and this has some consequences for which ethical concepts ought to be included. Limiting the scope of discussion may be defensible in some contexts, but broader ethical discussion remains necessary. (shrink)

In connection with research on humans, the term “vulnerability” is only appropriate to identify the special need for protection of certain sections of the population and individuals, if this term refers to the additional risk of certain groups of subjects. Authors who focus on the additional risk suffering of a subject group when defining vulnerability succeed in considering the specific worthiness of protection in a context-sensitive way. The attempt to define the risk–benefit assessment for vulnerable subject groups on a binding (...) basis faces considerable difficulties. This assessment depends both on the research situation and on the test subject. The normative aspect of this decision could be solved by referring to Rawl’s decision model of an original position. In cases where there is no benefit for the subject, arguments in the discussion of the risks and benefits that are based on a “group or overall benefit” and an “objective interest,” cannot be fully sustained. (shrink)

This article describes a method of scoping for potential ethical contentions within a resource constrained research environment where actor participation and bottom–up analysis is precluded. Instead of reverting to a top–down analytical structure, a data-led process is devised. This imitates a bottom–up analytic structure in the absence of the direct participation of actors, culminating in the construction of a map of the ethical landscape; a high-resolution ethical matrix of coded interpretations of various actors’ ethical framings of the technology. Despite its (...) limitations, which are discussed, the map can subsequently support the identification of areas where ethical contentions may be raised. Here, the method is described with reference to the construction and analysis of a map of the ethical landscape of carbon capture and storage technology. Taken as a preliminary stage of a larger study, it can support the design and initiation of more sophisticated analyses which may integrate stronger bottom–up participation and facilitate a reflective, deliberative process amongst actors. (shrink)

It is widely acknowledged that high-level AI principles are difficult to translate into practices via explicit rules and design guidelines. Consequently, many AI research and development groups that claim to adopt ethics principles have been accused of unwarranted “ethics washing”. Accordingly, there remains a question as to if and how high-level principles should be expected to influence the development of safe and beneficial AI. In this short commentary I discuss two roles high-level principles might play in AI ethics and governance. (...) The first and most often discussed “start-point” function quickly succumbs to the complaints outlined above. I suggest, however, that a second “cultural influence” function is where the primary value of high-level principles lies. (shrink)

Research Ethics, Volume 18, Issue 3, Page 210-225, July 2022. Interview-based research in multilingual situations can present researchers with specific ethical challenges relating to language-based power play, data handling and presentation. Studies indicate favouring the L1 as an interviewing language may produce better quality data, but external pressures can favour English as the dominant research language. This article examines researcher perceptions and experiences of the ethical consequences of language choice and the practical issues involved. Interviews were conducted with five European (...) researchers working on an interview-based project with experiences of diverse interviewing scenarios. The four moral principles of respect for autonomy, justice, beneficence and non-maleficence were used as a framework for analysis. The analysis revealed a nuanced picture of ethical issues in both L1- and English-oriented scenarios. This included potential misrepresentation and deculturalisation of the data in the former, and language-based power asymmetries in the latter. The findings highlight the importance of documenting ethics-related methodological details of language use, and advocates publication practices favouring the inclusion and foregrounding of L1 data. (shrink)

Background: Informed consent is a legal as well as ethical prerequisite in clinical research. For dementia research, informed consent can be a problem if subjects with dementia, whose capacity for understanding and thus also decision making might be limited, are to be exam- ined. This might result in exclusion of dementia patients from research, as capacity for understanding and decision making are often equated with the ability for rational decision making. However, this valuation has been criticized at times for attaching (...) too much impor- tance to the cognitive aspect of decision making. -/- Methods: This qualitative study investigates the actual consent procedure of a clini- cal research study in Germany with regard to dementia patients’ subjective and objective understanding of informed consent information. Research participants were ten dementia patients, who volunteered in two clinical research studies, as well as their caregivers. Data were collected by use of semi-structured interviews. -/- Results: It was determined that the patients’ comprehension of informed consent infor- mation was rather limited. However, a number of patients were quite aware of this. In con- trast, all caregivers claimed to have fully understood the provided information, while their objective comprehension was also incomplete. Several participants indicated that they did not attach much importance to the information given in the consent procedure and that their consent did not primarily depend on this information. Rather, participation in the research study for them seemed to be more of a problem-focused coping strategy for dealing with their diagnosis of dementia. -/- Conclusion: For research ethics these results raise the question whether the currently prevailing emphasis on the cognitive aspect of autonomous decision making, i.e., compre- hension, may be too one-sided, and to what extent the “volitional” aspect in giving consent should be given greater consideration. (shrink)

Media appeals encouraging people to sign organ donor cards suggest that donating one's own organs after death or donating the organs of a deceased family member is an act of charity, i.e., something which it would be meritorious for people to do but not wrong to avoid. This paper argues to the contrary that posthumous organ donation is a moral duty, a duty of the type that rests at the base of recently enacted state “Good Samaritan” laws which require a (...) witness to an emergency situation to render aid to the victim when this can be done at minimal cost/risk to the potential rescuer. (shrink)

Patients belonging to ethnic, racial, and religious minorities have been all but excluded from the legal academy's on-going conversation about informed consent. This article repairs that egregious omission. It begins by observing the narrowing of ethical justifications that underlie our informed consent law, tracing the ethical literature from the ancients to modern formulations of autonomy-centered models. Next, this article reviews the vast body of empirical data available in social science literature, that demonstrates how distinct from the autonomy model the broad (...) range of values and priorities held by patients from racial, ethnic, and religious minority groups is. The conclusion that informed consent's focus on the western notion of autonomy affirmatively harms minority patients is inescapable. The article concludes by offering a fiduciary model of informed consent law that could improve the quality of health care for more than 100 million minority patients, potentially at risk under current law while also regulating the informed consent procedure and practice in a way that will bring balance and justice to all American patients and providers. (shrink)

Medical students pose as physicians during clinical training. This article presents three cases where students justify misrepresenting their status for different reasons: self-concern for career, necessity for clinical training, and belief that the truth could cause undue psychological stress in the patient. The author suggests that serious consequences of this practice should be constantly reviewed in a critical light.

This paper introduces the controversy surrounding active voluntary euthanasia and describes the legal position on euthanasia and assisted suicide in the UK. Findings from studies of the nurses' attitudes to euthanasia from the national and international literature are reviewed. There are acknowledged difficulties in carrying out research into attitudes to euthanasia and hence the review of findings from the published studies is followed by a methodological review. This methodological review examines the research design and data collection methods used in the (...) published studies, problems with understanding definitions of euthanasia and the measurement of attitudes. The paper concludes with a discussion of how research in this area may influence nursing practice. (shrink)

For today, the medical association came to common opinion, that a doctor-scientist cannot be higher than the universal values. At a decision-making, equally with the scientific interests, which, undoubtedly, will bring to development of the theoretical and practical medicine, a doctor must take into account moral values. The doctrine of the informed consent of patient that is examined as a necessary condition of any medical interference became ethic basis of experiment with participation of human. An observance of confidentiality of the (...) results of the studies is also very important. The present development of the biomedical knowledge supposes realization of human research in a good cause, after the conducted tests on the animals and the other models. A clinical test on human must take place only then, when the risk does not exceed the benefit. Carrying out of the biomedical studies is considered as illegal, unconscionable, amoral and even criminal action. If the regulations and the norms of the law are not observed, it entails penal offence. This article provides the basic foundations of medical activities rather moral standards of medical and research activity, which in the different periods underwent the changes dictated by moral requirements of an era and society are analyzed. (shrink)

In financial disputes involving research, the parties are traditionally individual researchers and their institutions, biotech and pharmaceutical companies, and other entities engaged in the commercial development of biomedical research. Occasionally, research subjects claim that researchers have misled them or misappropriated their biological materials to derive financial gain. The best known example is the case of Moore v. Regents of the University of California, decided in 1990.With new developments in genomics, large-scale repositories of tissue and other biological specimens are increasingly important. (...) Biobanks have been established by various researchers, commercial entities, health-care institutions, and even entire countries. Individuals who contribute specimens almost always retain no commercial interest in any resulting research and language to that effect is now customarily included in informed consent documents signed at the time the specimen is given. Suppose, however, that the research subjects actually collect the specimens themselves, recruit the researcher, and provide financial support for the research. (shrink)