In contemporary paternalism literature, persuasion is commonly not considered paternalistic. Moreover, paternalism is typically understood to be problematic either because it is seen as coercive, or because of the insult of the paternalist considering herself superior. In this paper, I argue that doctors who persuade patients act paternalistically. Specifically, I argue that trying to persuade a patient (here understood as aiming for the patient to consent to a certain treatment, although he prefers not to) should be differentiated from trying to (...) convince him (here understood as aiming for the patient to want the treatment) and recommending (the doctor merely providing her professional opinion). These three forms of influence are illustrated by summaries of video-recorded hospital encounters. While convincing and recommending are generally not paternalistic, I argue that persuasion is what I call communicative paternalism and that it is problematic for two reasons. First, the patient’s preferences are dismissed as unimportant. Second, the patient might wind up undergoing treatment against his preferences. This does not mean that persuasion always should be avoided, but it should not be undertaken lightly, and doctors should be aware of the fine line between non-paternalism and paternalism. The fact that my analysis of paternalism differs from traditional accounts does not imply that I deem these to be wrong, but rather that paternalism should be considered as a more multi-faceted concept than previous accounts allow for. (shrink)

Physicians generally recommend that patients resuscitated with naloxone after opioid overdose stay in the emergency department for a period of observation in order to prevent harm from delayed sequelae of opioid toxicity. Patients frequently refuse this period of observation despiteenefit to risk. Healthcare providers are thus confronted with the challenge of how best to protect the patient’s interests while also respecting autonomy, including assessing whether the patient is making an autonomous choice to refuse care. Previous studies have shown that physicians (...) have widely divergent approaches to navigating these conflicts. This paper reviews what is known about the effects of opioid use disorder on decision-making, and argues that some subset of these refusals are non-autonomous choices, even when patients appear to have decision making capacity. This conclusion has several implications for how physicians assess and respond to patients refusing medical recommendations after naloxone resuscitation. (shrink)

An anthropocentric scope for clinical medical ethics (CME) has largely separated this area of bioethics from environmental concerns. In this article, we first identify and reconcile the ethical issues imposed on CME by climate change including the dispersion of related causes and effects, the transdisciplinary and transhuman nature of climate change, and the historic divorce of CME from the environment. We then establish how several moral theories undergirding modern CME, such as virtue ethics, feminist ethics, and several theories of justice, (...) promote both a flourishing of human medical practice and the environment. We conclude by defining an expanded the scope of CME as inclusive of not only patients, families, physicians, and other health professionals but other humans, non-humans, and their shared environment. We then apply this scope and theory to a widely used framework for applying CME, the Four Topics model, to construct a climate conscious approach to CME. (shrink)

Epistemic injustice has undergone a steady growth in the medical ethics literature throughout the last decade as many ethicists have found it to be a powerful tool for describing and assessing morally problematic situations in healthcare. However, surprisingly scarce attention has been devoted to how epistemic injustice relates to physicians’ professional duties on a conceptual level. I argue that epistemic injustice, specifically testimonial, collides with physicians’ duty of nonmaleficence and should thus be actively fought against in healthcare encounters on the (...) ground of professional conduct. I do so by fleshing out how Fricker’s conception of testimonial injustice conflicts with the duty of nonmaleficence as defined in Beauchamp and Childress on theoretical grounds. From there, I argue that testimonial injustice produces two distinct types of harm, epistemic and non-epistemic. Epistemic harms are harms inflicted by the physician to the patient qua knower, whereas non-epistemic harms are inflicted to the patient qua patient. This latter case holds serious clinical implications and represent a failure of the process of due care on the part of the physician. I illustrate this through examples taken from the literature on fibromyalgia syndrome and show how testimonial injustice causes wrongful harm to patients, making it maleficent practice. Finally, I conclude on why nonmaleficence as a principle will not be normatively enough to fully address the problem of epistemic injustice in healthcare but nevertheless may serve as a good starting point in attempting to do so. (shrink)

Rarely do everyday discussions of ethical issues invoke ethical theories. Even ethicists deploy ethical theories less frequently than one might expect. In my experience, the most powerful ethical arguments rarely appeal to an ethical theory. How is this possible? I contend that ethical argumentation can proceed successfully without invoking any ethical theory because the structure of good ethical argumentation involves leveraging a sturdy norm, where the norm is usually far more specific than a complete ethical theory. To illustrate this idea, (...) I present the argumentative structure of five powerful articles in the ethics literature. I further argue that the present model of ethical argumentation is consistent with the coherence model of ethical justification, but the former need not--and usually should not--invoke the latter explicitly for various practical reasons. (shrink)

In this Open Peer Commentary, we draw on our clinical experience to argue that instrumental paternalism carves a pathway to competent refusal of medical intervention. Whether C successfully navigat...

During the Third Reich, state‐sponsored violence was linked to scientific research on many levels. Prisoners were used as involuntary subjects for medical experiments, and body parts from victims were used in anatomy and neuropathology on a massive scale. In many cases, such specimens remained in scientific collections and were used until long after the war. International bioethics, for a long time, had little to say on the issue. Since the late 1980s, with a renewed interest in the Holocaust and other (...) Nazi crimes, a consensus has increasingly taken hold that research on human tissues and body parts from the Nazi era is inadmissible, and that such specimens should be removed from scientific collections and buried. The question of what to do with scientific data obtained from these sources has not received adequate attention, however, and remains unsolved. This paper traces the history of debates about the ethical implications of using human tissue or body parts from the Nazi period for scientific purposes, primarily in the fields of anatomy and neuropathology. It also examines how this issue, from after the war until today, influenced the establishment of legal and bioethical norms on the use of human remains from morally tainted sources, with a particular emphasis on Germany and Austria. It is argued that the use of such specimens and of data derived from them is unethical not only because of potential harms to posthumous rights of the victims, but also because such use constitutes a moral harm to society at large. (shrink)

Philosophers of science deploy mathematical models to describe epistemic communities, or groups of people creating and sharing knowledge for individual and collective purposes. These models capture...

As climate change risks intensify, I welcome Ray and Cooper’s call for bioethicists to engage with environmental injustice, though I am pessimistic it is another false dawn for bioethics engagement...

Advances in science and technology has led to the rise of different issues in relation to human life and security as well as the environment. These issues also paved the way for the field of Bioethics with its principles aiming to uphold moral standards on these issues. This study aimed to test and modify the theoretical models of the factors influencing the conviction schemas of BS Biology Bioethics students of a state university toward bioethical issues. One hundred ten (110) undergraduate (...) students were pre-tested and post-tested for comprehension of Bioethics principles, moral disengagement, and convictions toward bioethical issues. Identified personal factors were also retrieved for testing. Results showed that the Bioethics course has increased the participants’ comprehension of Bioethics principles, moral disengagement, and convictions. Stepwise multiple regression results revealed that anxiety, extraversion, exposure to media, and moral disengagement can predict pre-convictions. On the other hand, only moral disengagement was found to predict post-convictions. Furthermore, moral disengagement can be predicted by convictions before the course while anxiety, openness to change, and convictions were the predictors after the course. The proposed theoretical model was for tested goodness of fit using Structural Equation Modeling (SEM) and acceptance was based on the model fit criteria. Since the proposed model was not found to fit the data, this was revised based on the results of multiple regression and correlation among exogenous variables. Three models were constructed and found to fit the data adequately. These models show the direct and indirect effects of personal factors and moral disengagement on convictions. The mediating effects of moral disengagement and convictions to each other were also shown. Findings further imply that the ability to understand the principles does not influence convictions, but rather moral disengagement has a greater influence on the said factor. Improving moral education by integrating Bioethics to the curriculum is recommended to further strengthen the moral judgement and reasoning of students. (shrink)

In recent years the phenomenological approach to bioethics has been rejuvenated and reformulated by, among others, the Swedish philosopher Fredrik Svenaeus. Building on the now-relatively mainstream phenomenological approach to health and illness, Svenaeus has sought to bring phenomenological insights to bear on the bioethical enterprise, with a view to critiquing and refining the “philosophical anthropology” presupposed by the latter. This article offers a critical but sympathetic analysis of Svenaeus’ efforts, focusing on both his conception of the ends of phenomenological bioethics (...) and the predominantly Heideggerian means he employs. Doing so reveals certain problems with both. I argue that the main aim of phenomenological bioethics as set out by Svenaeus needs to be reformulated, and that there are important oversights in his approach to reaching this end. I conclude by arguing that to overcome the latter problem we should draw instead on the works of Max Scheler and Hans Jonas. (shrink)

BackgroundCaregivers may play a fundamental role in the clinical pathway of cancer patients. They provide emotional, informational, and functional support as well as practical assistance, and they might help mediate the interaction and communication with the oncologists when care options are discussed, or decisions are made. Little is known about the impact of dyadic dynamics on patient-doctor communication, patient's satisfaction, or adherence to the therapies. This study protocol aims to evaluate the efficacy of a psychological support intervention on patients-caregivers relationship (...) and their alignment in the treatment decision-making process and estimate related improvement in patient' compliance/adherence to treatments.MethodsA total of 102 patients-caregivers' dyads will be involved, among breast and prostate cancer patients. The study entails a pre- post- evaluation through psychological questionnaires, with a randomization of participants in two conditions, the experimental one in which subjects participate in a psychological support consultation, and the control one, where dyads do not receive any intervention. A follow up after 6 months from the enrollment is planned.DiscussionA positive impact of the psychological support intervention on patients' anxiety, depression, distress, and perceived social support is expected. Such improvements can directly affect patients' satisfaction and adherence to treatments. Data gathered from this study may inform health care providers, policy makers, and public health managers about the importance of caregiver's involvement in the cancer care pathway, and the best way to manage it. A further impact is to develop a specific intervention protocol to support caregivers' involvement in cancer care pathway, improve patient's wellbeing, the interaction with physicians and the compliance with the cancer treatment. (shrink)

This essay appreciatively and critically engages the late Robert Veatch’s extensive and important contributions to transplantation ethics, in the context of his overall ethical theory and his methods for resolving conflicts among ethical principles. It focuses mainly on ways to obtain and allocate organs from deceased persons, with particular attention to express donation, mandated choice, and presumed consent/routine salvaging in organ procurement and to conflicts between medical utility and egalitarian justice in organ allocation. It concludes by examining the unclear relations (...) between Veatch’s ideal moral theory and his nonideal moral theory, especially in organ allocation. (shrink)

In response to theJournal of Religious Ethics(JRE) editors' request for reflections on “how religious ethicists have interacted with, and ought to interact with, public policy decision makers,” this essay focuses on doing religious ethics in the context of doing public bioethics, especially through participating in public bioethics bodies (PBBs) established to provide advice to public policymakers in what might be called “mediated advocacy.” Drawing heavily on the author's experience as a member of and a consultant to several PBBs, it features (...) case studies of PBBs deliberating about and recommending public policies to address the scarcity of postmortem organs for transplantation, the equitable allocation of COVID‐19 vaccine, cloning humans, and human embryonic stem cell research. (shrink)

Scholars, policymakers and organizations in the EU, especially at the level of the European Commission, have turned their attention to the ethics of (trustworthy and human-centric) Artificial Intelligence (AI). However, there has been little reflexivity on (1) the history of the ethics of AI as an institutionalized phenomenon and (2) the comparison to similar episodes of “ethification” in other fields, to highlight common (unresolved) challenges.Contrary to some mainstream narratives, which stress how the increasing attention to ethical aspects of AI is (...) due to the fast pace and increasing risks of technological developments, Science and Technology Studies(STS)-informed perspectives highlight that the rise of institutionalized assessment methods indicates a need for governments to gain more control of scientific research and to bring EU institutions closer to the public on controversies related to emerging technologies.This article analyzes how different approaches of the recent past (i.e. bioethics, technology assessment (TA) and ethical, legal and social (ELS) research, Responsible Research and Innovation (RRI)) followed one another, often “in the name of ethics”, to address previous criticisms and/or to legitimate certain scientific and technological research programs. The focus is on how a brief history of the institutionalization of these approaches can provide insights into present challenges to the ethics of AI related to methodological issues, mobilization of expertise and public participation. (shrink)

Zusammenfassung Behandlungsentscheidungen bei Frühgeburten an der Grenze der Lebensfähigkeit stellen eine große Herausforderung dar. In der Neonatologie hat sich das Konzept einer prognostischen Grauzone etabliert, die als ein Grenzbereich verstanden wird, in dem sich aus medizinischer Sicht die Nutzen-Risiko-Abwägung aufgrund der unsicheren Prognose sehr schwierig gestaltet und sich aus ethischer Sicht sowohl eine kurative als auch eine palliative Versorgung prinzipiell rechtfertigen lassen. Innerhalb der Grauzone wird zumeist eine gemeinsame Entscheidungsfindung mit den Eltern in Form eines „shared-decision making“ (SDM) favorisiert, die (...) sich an dem besten Interesse des Neugeborenen orientieren soll. Allerdings findet sich kein Konsens dazu, wie diese Anforderungen umzusetzen sind. Im vorliegenden Beitrag werden unter Einbeziehung der empirischen Studienlage ethische Anforderungen an die Umsetzung des SDM formuliert. Es wird gezeigt, dass Eltern bzw. Schwangere unterschiedliche Präferenzen hinsichtlich der Art ihrer Einbindung haben. Hieraus ergibt sich aus ethischer Sicht die Anforderung, im Rahmen des SDM gemeinsam herauszuarbeiten, welche Rolle sie bei der Entscheidungsfindung einnehmen wollen und welche Präferenzen und Werte für sie bei der Therapieentscheidung von Relevanz sind. Zudem wird in unserer Untersuchung auf die Frage eingegangen, inwiefern die zu erwartende Lebensqualität der Kinder in die Bestimmung des besten Interesses der Neugeborenen einbezogen werden kann. Es wird gezeigt, dass in der prognostischen Grauzone neben den Präferenzen der Eltern bzw. Schwangeren gegenwärtig kaum Kriterien zur inhaltlichen Bestimmung des besten Interesses des Neugeborenen zur Verfügung stehen – ein wesentlicher Grund, der aus ethischer Sicht für die Implementierung des skizzierten Modells des SDM spricht. (shrink)

The legitimacy of the refusal of South Australian nurses to care for second trimester abortion patients on grounds of conscience is examined as a test case for a theory of permissible limits on the autonomy of health care professionals. In cases of health care professional (HCP) conscientious refusal, it is argued that a balance be struck between the HCPs' claims to autonomous action and the consequences to them of having their autonomous action restricted, and the entitlement of patients to care (...) and the consequences for them of being refused such care. Conscientious action that results in the disruption or termination of health care services, however, is always impermissible on two grounds. Firstly, because it is at this point that the action '... invades a patient's autonomy, puts a patient at serious risk ... [and] treats a patient unjustly' (1) Secondly, because the consequences of such refusals turn them into political acts--acts of civil disobedience. It is arguable that in order for acts of civil disobedience to be legitimate, certain obligations are required of the dissenter by the community. It is concluded that the actions of the South Australian nurses, which have over the last few years both terminated and disrupted second trimester services, are morally impermissible. (shrink)

Alongside clinical practice, medical schools now confront mounting reasons to examine nontraditional approaches to ethics. Increasing awareness of systems of oppression and their effects on the experiences of trainees, patients, professionals, and generally on medical care, is pushing medical curriculum into an unfamiliar territory. While there is room throughout medical school to take up these concerns, ethics curricula are well-positioned to explore new pedagogical approaches. Feminist ethics has long addressed systems of oppression and broader structures of power. Some of its (...) established concepts can offer distinct value as medical climates change and adapt in response to increased awareness of the experiences of marginalized individuals and populations. In this essay, we offer a set of concepts from feminist ethics that have a fundamental role to play in medical school curriculum: relationality, relational autonomy, and epistemic justice. Though these concepts are not exhaustive, they can be taught in tandem with the concepts that have historically grounded ethics education in medical school, such as autonomy and beneficence. Ultimately, we contend that these concepts hold particular value in ethics curriculum insofar as they diversify mainstream ethical approaches, directly address the pervasiveness of systems of oppression in medicine, and recognize the voices and concerns that may be marginalized in standard approaches. (shrink)

The emergence of ethical concerns surrounding artificial intelligence (AI) has led to an explosion of high-level ethical principles being published by a wide range of public and private organizations. However, there is a need to consider how AI developers can be practically assisted to anticipate, identify and address ethical issues regarding AI technologies. This is particularly important in the development of AI intended for healthcare settings, where applications will often interact directly with patients in various states of vulnerability. In this (...) paper, we propose that an ‘embedded ethics’ approach, in which ethicists and developers together address ethical issues via an iterative and continuous process from the outset of development, could be an effective means of integrating robust ethical considerations into the practical development of medical AI. (shrink)

Digital mental health can be understood as the in situ quantification of an individual’s data from personal devices to measure human behavior in both health and disease (Huckvale, Venkatesh and Chr...

Stresses on healthcare systems and moral distress among clinicians are urgent, intertwined bioethical problems in contemporary healthcare. Yet conceptualizations of moral distress in bioethical inquiry often overlook a range of routine threats to professional integrity in healthcare work. Using examples from our research on frontline physicians working during the COVID-19 pandemic, this article clarifies conceptual distinctions between moral distress, moral injury, and moral stress and illustrates how these concepts operate together in healthcare work. Drawing from the philosophy of healthcare, we (...) explain how moral stress results from the normal operations of overstressed systems; unlike moral distress and moral injury, it may not involve a sense of powerlessness concerning patient care. The analysis of moral stress directs attention beyond the individual, to stress-generating systemic factors. We conclude by reflecting on how and why this conceptual clarity matters for improving clinicians’ professional wellbeing, and offer preliminary pathways for intervention. (shrink)

Background: As a normative theory, care ethics has become widely theorized and accepted. However, there remains a lack of clarity in relation to its use in practice, and a care ethics framework for practice. Maternity care is fraught with ethical issues and care ethics may provide an avenue to enhance ethical sensitivity. Aim: The purpose of this scoping review is to determine how care ethics is used amongst health professions, and to collate the information in data charts to create a (...) care ethics framework and definition for midwifery practice. Method: The scoping review was conducted according to the Preferred Reporting Items for Scoping reviews (PRISMA-ScR) and Joanna Briggs Institute (JBI) recommendations. The search was applied to the databases CINAHL, MEDLINE, PschInfo and Pubmed which were searched in September 2019 and again in July 2021. The inclusion criteria were guided by the mnemonic for search terms: Participants, Concept, and Context (PCC) and included variations of health care professionals, care ethics and utilization. The search was limited to qualitative studies published in English between 2010 and 2021. A data extraction tool was used to extract and synthesize data into categories. The articles were screened for eligibility by title, abstract and full text review, by two independent reviewers. Ethical Considerations: The scoping review was guided by ethical conduct respecting authorship and referencing sources. Results: Twelve of the initially identified 129 studies were included in the scoping review. Data synthesis yielded four categories of care ethics use by health professionals: relationship, context, attention to power and caring practices. In combination, the evidence forms a framework for care ethics use in midwifery practice. Conclusion: Care ethics use by health professionals enhances ethical sensitivity. A framework and definition for care ethics for midwifery practice is proposed. This review will be of interest to midwives and other health practitioners seeking to enhance ethical sensitivity. (shrink)

There is a current debate about if, and in what sense, machine learning systems used in the medical context need to be explainable. Those arguing in favor contend these systems require post hoc explanations for each individual decision to increase trust and ensure accurate diagnoses. Those arguing against suggest the high accuracy and reliability of the systems is sufficient for providing epistemic justified beliefs without the need for explaining each individual decision. But, as we show, both solutions have limitations—and it (...) is unclear either address the epistemic worries of the medical professionals using these systems. We argue these systems do require an explanation, but an institutional explanation. These types of explanations provide the reasons why the medical professional should rely on the system in practice—that is, they focus on trying to address the epistemic concerns of those using the system in specific contexts and specific occasions. But ensuring that these institutional explanations are fit for purpose means ensuring the institutions designing and deploying these systems are transparent about the assumptions baked into the system. This requires coordination with experts and end-users concerning how it will function in the field, the metrics used to evaluate its accuracy, and the procedures for auditing the system to prevent biases and failures from going unaddressed. We contend this broader explanation is necessary for either post hoc explanations or accuracy scores to be epistemically meaningful to the medical professional, making it possible for them to rely on these systems as effective and useful tools in their practices. (shrink)

In writing The Way of Medicine: Ethics and the Healing Profession, Farr Curlin and Christopher Tollefsen have provided a helpful, accessible resource for clinicians seeking to conscientiously practice medicine in pursuit of health. These authors identify a major threat to such a practice, which they call the provider of services model (PSM), and compare it to a historic way of practicing that they seek to recover, called the Way of Medicine. Throughout the book, they contrast the PSM and the Way (...) in ways that are helpful. However, the process of continual contrasts and the reliance on controversial cases presents several counter-productive drawbacks that weaken their project. (shrink)

BackgroundEthical problems in everyday healthcare work emerge for many reasons and constitute threats to ethical values. If these threats are not managed appropriately, there is a risk that the patient may be inflicted with moral harm or injury, while healthcare professionals are at risk of feeling moral distress. Therefore, it is essential to support the learning and development of ethical competencies among healthcare professionals and students. The aim of this study was to explore the available literature regarding ethics education that (...) promotes ethical competence learning for healthcare professionals and students undergoing training in healthcare professions.MethodsIn this integrative systematic review, literature was searched within the PubMed, CINAHL, and PsycInfo databases using the search terms ‘health personnel’, ‘students’, ‘ethics’, ‘moral’, ‘simulation’, and ‘teaching’. In total, 40 articles were selected for review. These articles included professionals from various healthcare professions and students who trained in these professions as subjects. The articles described participation in various forms of ethics education. Data were extracted and synthesised using thematic analysis.ResultsThe review identified the need for support to make ethical competence learning possible, which in the long run was considered to promote the ability to manage ethical problems. Ethical competence learning was found to be helpful to healthcare professionals and students in drawing attention to ethical problems that they were not previously aware of. Dealing with ethical problems is primarily about reasoning about what is right and in the patient’s best interests, along with making decisions about what needs to be done in a specific situation.ConclusionsThe review identified different designs and course content for ethics education to support ethical competence learning. The findings could be used to develop healthcare professionals’ and students’ readiness and capabilities to recognise as well as to respond appropriately to ethically problematic work situations. (shrink)

Background The expressions of a “wish to hasten death” or “wish to die” raise ethical concerns and challenges. These expressions are related to ethical principles intertwined within the field of medical ethics, particularly in end-of-life care. Although some reviews were conducted about this topic, none of them provides an in-depth analysis of the meanings behind the “wish to hasten death/die” based specifically on the ethical principles of autonomy, dignity, and vulnerability. The aim of this review is to understand if and (...) how the meanings behind the “wish to hasten death/die” relate to and are interpreted in light of ethical principles in palliative care. Methods We conducted a meta-ethnographic review according to the PRISMA guidelines and aligned with Noblit and Hare’s framework. Searches were performed in three databases, Web of Science, PubMed, CINAHL, with no time restrictions. Original qualitative studies exploring the meanings given by patients, family caregivers and healthcare professionals in any context of palliative and end-of-life care were included. A narrative synthesis was undertaken. PROSPERO registration CRD42023360330. Results Out of 893 retrieved articles, 26 were included in the analysis, accounting for the meanings of a total of 2,398 participants. Several factors and meanings associated with the “wish to hasten death” and/or “wish to die” were identified and are mainly of a psychosocial and spiritual nature. The ethical principles of autonomy and dignity were the ones mostly associated with the “wish to hasten death”. Ethical principles were essentially inferred from the content of included articles, although not explicitly stated as bioethical principles. Conclusions This meta-ethnographic review shows a reduced number of qualitative studies on the “wish to hasten death” and/or “wish to die” explicitly stating ethical principles. This suggests a lack of bioethical reflection and reasoning in the empirical end-of-life literature and a lack of embedded ethics in clinical practice. There is a need for healthcare professionals to address these topics compassionately and ethically, taking into account the unique perspectives of patients and family members. More qualitative studies on the meanings behind a wish to hasten death, their ethical contours, ethical reasoning, and implications for clinical practice are needed. (shrink)

In 2019, a new national Ethics Review Authority (Etikprövningsmyndigheten, EPM) was created in Sweden. In 2020, Sweden’s Ethical Review of Research Involving Humans Act was revised, tightening this legislation, and increasing penalties for its infraction. This article draws on empirical material generated by artistic research conducted with a norm-critical contemporary music ensemble. Two of the musicians who collaborated with this research identify as disabled. Consequently, in accordance with EPM, my artistic research was subject to mandatory ethics review. Reflecting critically on (...) my own experience of seeking ethical approval for this artistic research project, I show how EPM’s process of ethics review enacts scientific boundary work in Sweden that privileges the interests of academic disciplines that are already well-established. As a corrective to EPM’s scientific boundary work I propose the application of an ethics of care that recognises the complex relationalities that exist between research institutions, researchers and research participants. (shrink)

Background When anti-cancer treatments have been given market authorization, but are not (yet) reimbursed within a healthcare system, physicians are confronted with ethical dilemmas. Arranging access through other channels, e.g., hospital budgets or out-of-pocket payments by patients, may benefit patients, but leads to unequal access. Until now, little is known about the perspectives of physicians on access to non-reimbursed treatments. This interview study maps the experiences and moral views of Dutch oncologists and hematologists.Methods A diverse sample of oncologists and hematologists (...) (n = 22) were interviewed. Interviews were analyzed thematically using Nvivo 12 qualitative data software.Results This study reveals stark differences between physicians’ experiences and moral views on access to anti-cancer treatments that are not (yet) reimbursed: some physicians try to arrange other ways of access and some physicians do not. Some physicians inform patients about anti-cancer treatments that are not yet reimbursed, while others wait for reimbursement. Some physicians have principled moral objections to out-of-pocket payment, while others do not.Conclusion Oncologists and hematologists in the Netherlands differ greatly in their perspectives on access to expensive anti-cancer treatments that are not (yet) reimbursed. As a result, they may act differently when confronted with dilemmas in the consultation room. Physicians working in different healthcare systems may face similar dilemmas. (shrink)

The Danish healthcare system must meet the need for easy and equal access to healthcare for every citizen. However, investigations have shown unfair prioritization of cancer patients and unfair prioritization of resources for expensive medicines over care. What is needed are principles for proper prioritization. This article investigates whether American ethicists Tom Beauchamp and James Childress’s principle of justice may be helpful as a conceptual framework for reflections on prioritization of expensive biological therapies in the Danish healthcare system. We present (...) an empirical study exploring the principles for prioritizing new expensive biological therapies. This study includes qualitative interviews with key Danish stakeholders experienced in antibody therapy and prioritizing resources for expensive medicines. Beauchamp and Childress’s model only covers government-funded primary and acute healthcare. Based on the interviews, this study indicates that to be helpful in a Danish context this model should include equal access for citizens to government-funded primary and acute healthcare, costly medicine, and other scarce treatments. We conclude that slightly modified, Beauchamp and Childress’s principle of justice might be useful as a conceptual framework for reflections on the prioritization of expensive biological therapies in the Danish healthcare system. (shrink)

The past decade has witnessed escalating legal and ethical challenges to the diagnosis of death by neurologic criteria. The legal tactic of demanding consent for the apnea test, if successful, can halt the DNC. However, US law is currently unsettled and inconsistent in this matter. Consent has been required in several trial cases in Montana and Kansas but not in Virginia and Nevada. In this paper, we analyze and evaluate the legal and ethical bases for requiring consent before apnea testing (...) and defend such a requirement by appealing to ethical and legal principles of informed consent and battery and the right to refuse medical treatment. We conclude by considering and rebutting two major objections to a consent requirement for apnea testing: a justice-based objection to allocate scarce resources fairly and a social utility objection that halting the diagnosis of brain death will reduce the number of organ donors. (shrink)

We have investigated attitudes towards the use of health data among the Swedish population by analyzing data from a survey answered by 1645 persons. Health data are potentially useful for a variety of purposes. Yet information about health remains sensitive. A balance therefore has to be struck between these opposing considerations in a number of contexts. The attitudes among those whose data is concerned will influence the perceived legitimacy of policies regulating health data use. We aimed to investigate what views (...) are held by the general public, and what aspects matter for the willingness to let one’s data be used not only for one’s own care but also for other purposes. We found that while there is a broad willingness to let one’s data be used, the possibility to influence that use is considered important. The study also indicated that when respondents are required to balance different interests, priority is typically given to compulsory schemes ensuring that data are available where needed, rather than voluntary participation and data protection. The policy implications to be drawn from this are not self-evident, however, since the fact that a majority has a certain attitude does not by itself determine the most adequate policy. (shrink)

The rapid and dynamic nature of digital transformation challenges companies that wish to develop and deploy novel digital technologies. Like other actors faced with this transformation, companies need to find robust ways to ethically guide their innovations and business decisions. Digital ethics has recently featured in a plethora of both practical corporate guidelines and compilations of high-level principles, but there remains a gap concerning the development of sound ethical guidance in specific business contexts. As a multinational science and technology company (...) faced with a broad range of digital ventures and associated ethical challenges, Merck KGaA has laid the foundations for bridging this gap by developing a Code of Digital Ethics (CoDE) tailored for this context. Following a comprehensive analysis of existing digital ethics guidelines, we used a reconstructive social research approach to identify 20 relevant principles and derive a code designed as a multi-purpose tool. Versatility was prioritised by defining non-prescriptive guidelines that are open to different perspectives and thus well-suited for operationalisation for varied business purposes. We also chose a clear nested structure that highlights the relationships between five core and fifteen subsidiary principles as well as the different levels of reference—data and algorithmic systems—to which they apply. The CoDE will serve Merck KGaA and its new Digital Ethics Advisory Panel to guide ethical reflection, evaluation and decision-making across the full spectrum of digital developments encountered and undertaken by the company whilst also offering an opportunity to increase transparency for external partners, and thus trust. (shrink)

After expressing our gratitude to the commentators for their valuable analyses and assessments of Principles of Biomedical Ethics, we respond to several particular critiques raised by the commentators under the following rubrics: the compatibility of different sets of principles and rules; challenges to the principle of respect for autonomy; connecting principles to cases and resolving their conflicts; the value of and compatibility of virtues and principles; common morality theory; and moral status. We point to areas where we see common agreement (...) with our commentators and respond to their critical evaluations. (shrink)

This autobiographical sketch is being published 50 years after I started as an assistant professor at Georgetown University in 1970. In this presentation, I cannot tell the full story of these 50 years. I write only about the formative years both before and after I was hired at Georgetown, and I emphasize two subjects. The first is the importance of the individuals who were massive influences on my intellectual development and aspirations. The second is the great importance of multidisciplinary work. (...) I came from philosophy, a discipline that generally did not emphasize or particularly value multidisciplinary work, but I was transformed by individuals in other disciplines who directed me to this style of work. Almost sheer luck brought each of these influences into my life. (shrink)

The provision of intensive care enables the lives of neonates, infants and children to be sustained or extended in circumstances previously regarded as impossible. However, as well as benefits, such care may confer burdens that resultingly frame continuation of certain interventions as futile, conferring more harm than or any, benefit. Subsequently, clinicians and families in the paediatric intensive care unit are often faced with decisions to withdraw, withhold or limit intensive care in order to act in the best interests of (...) the child. An integral consideration in respect of these decisions is that futility is a concept that has to be contextualised for all those involved. Recent high-profile legal cases highlight the professional, clinical, legal and social conflicts that can arise when parents and clinicians have different interpretations of futility. In acknowledging the complexity of these conflicts for clinicians, this paper aims to support a better understanding of futility as an integral concept in such difficult and emotive decisions within professional practice. We utilise the concept of futility to frame how these decisions to withdraw or withhold certain invasive life-prolonging interventions are ethically and legally justifiable, even when they disagree or conflict with parental views. To support clinicians in understanding these decisions, we in part use the familiar bioethical framework of Principlism developed by Beauchamp and Childress. We suggest that understanding legal and ethical analysis of futility ultimately will help clinicians in approaching and reflecting on such decision-making. (shrink)

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)

Citizen science (CS) has been presented as a novel form of research relevant for social concerns and global challenges. CS transforms the roles of participants to being actively involved at various stages of research processes, CS projects are dynamic, and pluralism arises when many non-professional researchers take an active involvement in research. Some argue that these elements all make existing research ethical principles and regulations ill-suited for guiding responsible CS conduct. However, while many have sought to highlight such challenges from (...) CS, few have discussed principles per se providing the foundation for regulations. In this article we will investigate the possibilities of midlevel principlism in guiding responsible CS conduct. Principlism has the potential of accommodating many of the concerns taken to reduce the relevance of existing principles. (shrink)

Background Informed consent prior to nursing care procedures is an established principle which acknowledges the right of the patient to authorise what is done to him or her; consent prior to nursing care should not be assumed. Nursing care procedures have the potential to be unwanted by the patient and hence require an appropriate form of authorisation that takes into consideration the relationship between the nurse and patient and the ongoing nature of care delivery. Research question How do nurses obtain (...) consent from patients prior to nursing care?. Design Critical incident technique and the collection of critical happenings. Participants 17 participants who were all qualified nurses took part in in-depth interviews Ethical considerations Ethical approval was obtained from the university ethics committee. Findings Information giving is a key component prior to nursing care procedures. Nurses provide information to patients as a routine aspect of care delivery, and do so even when the patient is unable to communicate themselves. Whilst some participants described how information giving might be rushed or overlooked at times, it is clearly an established part of nursing care and is provided to ensure the patient knows what to expect when care is delivered. What is less clear is the extent to which information is given in order to seek the consent – rather than merely inform the patient – about nursing care. Conclusion Implied consent is often an appropriate way in which consent is obtained prior to nursing care procedures. It takes into account the ongoing care provision and the relationship that exists between the nurse and patient. However implied consent should not be assumed. Nurses need to ensure that information is given not only to inform the patient about a procedure but to enable the patient to give his or her consent and to find an alternative way forward if the patient withholds their consent. (shrink)

The question that this paper tries to answer is Q: “Can good academic bioethics be done without commitment to moral theory?” It is argued that the answer to Q is an unequivocal “Yes” for most of what we could call “critical bioethics,” that is, the kind of bioethics work that primarily criticizes positions or arguments already in the literature or put forward by policymakers. The answer is also “Yes” for much of empirical bioethics. The second part of the paper then (...) provides an analysis of Q in relation to “constructive bioethics,” that is, bioethics work aimed at providing an argument for a particular position. In this part, it is argued that a number of the approaches or methods used that initially look like they involve no commitment to moral theory, nevertheless, involve such a commitment. This is shown to be the case for reflective equilibrium, mid-level theory, the use of theory fragments, and argument by analogy. (shrink)

In terminally ill individuals who would otherwise end their own lives, active voluntary euthanasia (AVE) can be seen as life-extending rather than life-shortening. Accordingly, AVE supports key pro-euthanasia arguments (appeals to autonomy and beneficence) and meets certain sanctity of life objections. This paper examines the extent to which a terminally ill individual’s wish to donate organs after death contributes to those life-extension arguments. It finds that, in a terminally ill individual who wishes to avoid experiencing life he considers to be (...) not worth living, and who also wishes to donate organs after death, AVE maximizes the likelihood that such donations will occur. The paper finds that the wish to donate organs strengthens the appeals to autonomy and beneficence, and fortifies the meeting of certain sanctity of life objections, achieved by life-extension arguments, and also generates appeals to justice that form novel life-extension arguments in favour of AVE in this context. (shrink)

The rapid expansion of computational tools and of data science methods in healthcare has, undoubtedly, raised a whole new set of bioethical challenges. As Laacke and colleagues rightly note,...

During the coronavirus pandemic, communities have faced shortages of important healthcare resources such as COVID-19 vaccines, medical staff, ICU beds and ventilators. Public health officials in the U.S. have had to make decisions about two major issues: which infected patients should be treated first, and which people who are at risk of infection should be inoculated first. Following Beauchamp and Childress’s principlism, adopted guidelines have tended to value both whole lives and life-years. This process of collective moral reasoning has revealed (...) our common commitment to both Kantian and utilitarian principles. For Kant, respecting people’s rights entails that we ought to value whole lives equally. Therefore we ought to allocate resources so as to maximise the number of patients who survive to discharge. By contrast, the principle of utility has us maximise life-years so that people can satisfy more of their considered preferences. Although people are treated impartially in the utilitarian calculus, it does not recognise their equal worth. Subjecting Kantian ethics and utilitarianism to the process of reflective equilibrium lends support to the idea that we need a pluralistic approach that would accommodate our moral intuitions regarding both the equal value of whole lives and the additive value of life-years. (shrink)

Background In Saudi clinical settings, cultural influences can give a patient’s family authority to override the patient’s autonomous right to make informed health-related decisions. Cultural values should not prevent patients from exercising their genuine preferences when making medical decisions in their own best interests. Discussion This article discusses the moral implications of family-centred medical decisions for autonomous patients who are competent and capable of making decisions. The author argues that socio-cultural values do not justify the decision to override patient autonomy (...) when patients express a preference for making their own choices. Conclusion The author recommends the use of a model of shared decision-making that accounts for both individual and relational conceptions of autonomy, approaching patients’ preferences in all medical encounters with the aim of minimising the potential for socio-cultural values to undermine patient autonomy. Although this approach is a safeguard against both family and medical paternalism, allowance is made for clinicians to act in weakly paternalistic ways when patients at high risk of exacerbating existing medical conditions are likely to benefit from delaying or limiting the disclosure of potentially distressing but non-fatal diagnoses and prognoses. Thus, the author argues that even in a culture that supports family involvement in management decisions, physicians should respect patient autonomy by asking patients for their preferences in the disclosure of their medical diagnoses, prognoses and management options and verifying patients’ preferences about the roles they wish their families to play (if any) in health-related decisions. (shrink)

BackgroundIn Saudi clinical settings, benevolent family care that reflects strongly held sociocultural values is commonly used to justify overriding respect for patient autonomy. Because the welfare of individuals is commonly regarded as inseparable from the welfare of their family as a whole, these values are widely believed to obligate the family to protect the welfare of its members by, for example, giving the family authority over what healthcare practitioners disclose to patients about their diagnoses and prognoses and preventing them from (...) making informed decisions about their healthcare.DiscussionFamily dominance over the healthcare decisions of competent patients is ethically problematic when the family prevent healthcare practitioners from disclosing diagnoses and prognoses to patients who have the capacity to consent and make decisions in their own best interests. Thus, the author holds that sociocultural values ought to be respected only when they do not prevent competent patients from knowing their diagnoses and prognoses or prevent them from making their own decisions.ConclusionHealthcare practitioners should not allow patients’ families to control what can or cannot be disclosed to competent patients. This is particularly important when patients are approaching death so that they may address their material and spiritual wishes—among other needs—as they prepare for death. Justification for this position is drawn from the Maqasid Al-Shariah-based Islamic bioethics approach, from which it is possible to argue that the harm of withholding diagnoses and prognoses from patients who are imminently dying outweighs the potential benefits. (shrink)

This discussion paper considers how seldom recognised theories influence clinical ethics committees. A companion paper examined four major theories in social science: positivism, interpretivism, critical theory and functionalism, which can encourage legalistic ethics theories or practical living bioethics, which aims for theory–practice congruence. This paper develops the legalistic or living bioethics themes by relating the four theories to clinical ethics committee members’ reported aims and practices and approaches towards efficiency, power, intimidation, justice, equality and children’s interests and rights. Different approaches (...) to framing ethical questions are also considered. Being aware of the four theories’ influence can help when seeking to understand and possibly change clinical ethics committee routines. The paper is not a research report but is informed by a recent study in two London paediatric cardiac units. Forty-five practitioners and related experts were interviewed, including eight members of ethics committees, about the work of informing, preparing and supporting families during the extended process of consent to children’s elective heart surgery. The mosaic of multidisciplinary teamwork is reported in a series of papers about each profession, including this one on bioethics and law and clinical ethics committees’ influence on clinical practice. The qualitative social research was funded by the British Heart Foundation, in order that more may be known about the perioperative views and needs of all concerned. Questions included how disputes can be avoided, how high ethical standards and respectful cooperation between staff and families can be encouraged, and how minors’ consent or refusal may be respected, with the support of clinical ethics committees. (shrink)

Background This analysis is about practical living bioethics and how law, ethics and sociology understand and respect children’s consent to, or refusal of, elective heart surgery. Analysis of underlying theories and influences will contrast legalistic bioethics with living bioethics. In-depth philosophical analysis compares social science traditions of positivism, interpretivism, critical theory and functionalism and applies them to bioethics and childhood, to examine how living bioethics may be encouraged or discouraged. Illustrative examples are drawn from research interviews and observations in two (...) London paediatric cardiac units. This paper is one of a series on how the multidisciplinary cardiac team members all contribute to the complex mosaic of care when preparing and supporting families’ informed consent to surgery. Results The living bioethics of justice, care and respect for children and their consent depends on theories and practices, contexts and relationships. These can all be undermined by unseen influences: the history of adult-centric ethics; developmental psychology theories; legal and financial pressures that require consent to be defined as an adult contract; management systems and daily routines in healthcare that can intimidate families and staff; social inequalities. Mainstream theories in the clinical ethics literature markedly differ from the living bioethics in clinical practices. Conclusion We aim to contribute to raising standards of respectful paediatric bioethics and to showing the relevance of virtue and feminist ethics, childhood studies and children’s rights. (shrink)

Aims To examine the understanding of the ethical dilemmas associated with Big Data and artificial intelligence (AI) among Jordanian medical students, physicians in training, and senior practitioners. Methods We implemented a literature-validated questionnaire to examine the knowledge, attitudes, and practices of the target population during the period between April and August 2023. Themes of ethical debate included privacy breaches, consent, ownership, augmented biases, epistemology, and accountability. Participants’ responses were showcased using descriptive statistics and compared between groups using t-test or ANOVA. (...) Results We included 466 participants. The greater majority of respondents were interns and residents (50.2%), followed by medical students (38.0%). Most participants were affiliated with university institutions (62.4%). In terms of privacy, participants acknowledged that Big Data and AI were susceptible to privacy breaches (39.3%); however, 59.0% found such breaches justifiable under certain conditions. For ethical debacles involving informed consent, 41.6% and 44.6% were aware that obtaining informed consent posed an ethical limitation in Big Data and AI applications and denounced the concept of “broad consent”, respectively. In terms of ownership, 49.6% acknowledged that data cannot be owned yet accepted that institutions could hold a quasi-control of such data (59.0%). Less than 50% of participants were aware of Big Data and AI’s abilities to augment or create new biases in healthcare. Furthermore, participants agreed that researchers, institutions, and legislative bodies were responsible for ensuring the ethical implementation of Big Data and AI. Finally, while demonstrating limited experience with using such technology, participants generally had positive views of the role of Big Data and AI in complementing healthcare. Conclusion Jordanian medical students, physicians in training and senior practitioners have limited awareness of the ethical risks associated with Big Data and AI. Institutions are responsible for raising awareness, especially with the upsurge of such technology. (shrink)

Background There have been different ethical approaches to the issues in the history of philosophy. Two American philosophers Beachump and Childress formulated some ethical principles namely 'respect to autonomy', 'justice', 'beneficence' and 'non-maleficence'. These 'Four Principles' were presented by the authors as universal and applicable to any culture and society. Mawlana, a great figure in Sufi tradition, had written many books which not only guide people how to worship God to be close to Him, but also advise people how to (...) lead a good life to enrich their personality, as well as to create a harmonious society and a peaceful world. Methods In this study we examined the major works of Mawlana to find out which of these 'Four Principles of Bioethics' exist in Mawlana's ethical understanding. Results We have found in our study that all these principles exist in Mawlana's writings and philosophy in one form or another. Conclusions We have concluded that, further to Beachump and Childress' claim that these principles are universal and applicable to any culture and society, these principles have always existed in different moral traditions in different ways, of which Mawlana's teaching might be presented as a good example. (shrink)