Baselines are commonly used to enable harm identification. The temporal, the counterfactual and the duty-based normative baselines are the most prominent. Each of these captures an aspect of common conceptions of what it is to harm and be harmed. However, each baseline also fails to deliver workable identifications of harm when presented with certain types of case. Problematic cases are found readily in childhood, a venue in which harm identification is often called for. Without a reliable means of identifying harm (...) in childhood, harm cannot properly play a central role in normative assessments of parental practices and state intervention. This paper presents childhood cases in which the prominent baselines fail and offers an alternative: the interest-based normative baseline. Should the interest-based normative baseline replace its rivals and reign supreme? I argue not, presenting a case for maintaining a suite of baselines for use in varying contexts. (shrink)

Part of the standard protection of decisionally incapacitated research subjects is a prohibition against enrolling them unless surrogate decision makers authorize it. A common view is that surrogates primarily ought to make their decisions based on what the decisionally incapacitated subject would have wanted regarding research participation. However, empirical studies indicate that surrogate predictions about such preferences are not very accurate. The focus of this article is the significance of surrogate accuracy in the context of research that is not expected (...) to benefit the research subject. We identify three morally relevant asymmetries between being enrolled and not being enrolled in such non-beneficial research, and conclude that when there is a non-negligible probability that surrogates’ predictions are wrong, it will generally be better to err on the side of not authorizing enrollment. (shrink)

A discussion of ethical decision-making literature is overdue. In this article, we summarize the current literature of ethical decision-making models used in mental health professions. Of 1,520 articles published between 2001 and 2020 that met initial search criteria, 38 articles were included. We report on the status of empirical evidence for the use of these models along with comparisons, limitations, and considerations. Ethical decision-making models were synthesized into eight core procedural components and presented based on the composition of steps present (...) in each model. This taxonomy provides practitioners, trainers, students, and supervisors relevant information regarding ethical decision-making models. (shrink)

The introduction of new medical treatments based on invasive technologies has often been surrounded by both hopes and fears. Hope, since a new intervention can create new opportunities either in terms of providing a cure for the disease or impairment at hand; or as alleviation of symptoms. Fear, since an invasive treatment involving implanting a medical device can result in unknown complications such as hardware failure and undesirable medical consequences. However, hopes and fears may also arise due to the cultural (...) embeddedness of technology, where a therapy due to ethical, social, political and religious concerns could be perceived as either a blessing or a threat. While Deep Brain Stimulation (DBS) for treatment resistant depression (TRD) is still in its cradle, it is important to be proactive and try to scrutinize both surfacing hopes and fears. Patients will not benefit if a promising treatment is banned or avoided due to unfounded fears, nor will they benefit if DBS is used without scrutinizing the arguments which call for caution. Hence blind optimism is equally troublesome. We suggest that specificity, both in terms of a detailed account of relevant scientific concerns as well as ethical considerations, could be a way to analyse expressed concerns regarding DBS for TRD. This approach is particularly fruitful when applied to hopes and fears evoked by DBS for TRD, since it can reveal if our comprehension of DBS for TRD suffer from various biases which may remain unnoticed at first glance. We suggest that such biases exist, albeit a further analysis is needed to explore this issue in full. (shrink)

Next SectionCultural differences in end-of-life care and the moral disagreements these sometimes give rise to have been well documented. Even so, cultural considerations relevant to end-of-life care remain poorly understood, poorly guided, and poorly resourced in health care domains. Although there has been a strong emphasis in recent years on making policy commitments to patient-centred care and respecting patient choices, persons whose minority cultural worldviews do not fit with the worldviews supported by the conventional principles of western bioethics face a (...) perpetual struggle in getting their care needs met in a meaningful, safe, and healing way. In this essay, attention is given to exploring why cultural differences exist, why they matter, and how health care providers should treat them in order to reduce the incidence and impact of otherwise preventable harmful moral outcomes in end-of-life care. In addressing these questions, a novel application of the renowned terror management theory will be made. (shrink)

Objective: To examine students’ attitudes and potential behaviour towards informing a 12-year-old patient of her terminal prognosis in a situation in which her parents do not wish her to be told, as they pass through a modern medical curriculum.Design: A cohort study of students entering Glasgow University’s new medical curriculum in October 1996.Methods: Students’ responses obtained before year 1 and at the end of years 1, 3, and 5 to the “childhood leukaemia” vignette of the Ethics in Health Care Survey (...) Instrument were examined quantitatively and qualitatively. Analysis of the students’ multichoice answers enabled measurement of the movement towards professional consensus opinion. An analysis of their written justifications for their answers helped to determine whether their reasoning was consistent with professional consensus and enabled measurement of changes in knowledge content and recognition of the values inherent in the vignette. Themes on the students’ reasoning behind their decision to tell the patient or not were also identified.Results: Unlike other vignettes of the EHCI in which autonomy was a main theme, few students chose the consensus answer before year 1 and there was no significant movement towards consensus at any point during the course. In defence of their decision to withhold information, the students expressed strong paternalistic opinions. The patient’s age was seen as a barrier to respecting her autonomy.Conclusions: It is important to identify students’ perceptions on entry to medical school. Transformative learning theory may provide the basis for an approach to foster doctors who consider the rights of young people. Small-group teaching is most conducive to this approach. The importance of positive role modelling is also emphasised. (shrink)

The practice of covertly administering medication is controversial. Although condemned by some as overly paternalistic, others have suggested that it may be acceptable if patients have permanent mental incapacity and refuse needed treatment. Ethical, legal, and clinical considerations become more complex when the mental incapacity is temporary and when the medication actually serves to restore autonomy. We discuss these issues in the context of a young man with schizophrenia. His mother had been giving him antipsychotic medication covertly in his soup. (...) Should the doctor continue to provide a prescription, thus allowing this to continue? We discuss this case based on the “four principles” ethical framework, addressing the conflict between autonomy and beneficence/non-maleficence, the role of antipsychotics as an autonomy restoring agent, truth telling and the balance between individual versus family autonomy. (shrink)

Is there a rational and ethical basis for efforts to rescue individuals in dire straits? When does rescue have ethical support, and when does it reflect an irrational impulse? This paper defines a Rule of Rescue and shows its intuitive appeal. It then proceeds to argue that this rule lacks support from standard principles of justice and from ethical principles more broadly, and should be rejected in many situations. I distinguish between agent-relative and agent-neutral reasons, and argue that the Rule (...) of Rescue qualifies only in a narrow range of cases where agent-relative considerations apply. I conclude that it would be wise to set aside the Rule of Rescue in many cases, especially those involving public policies, where it has only weak normative justification. The broader implications of this analysis are noted. (shrink)

The paper begins by tracing the historical development of American medicine as practice, profession, and industry from the eighteenth century to the present. This historical outline emphasizes shifting conceptions of physicians and physician ethics. It lays the basis for showing, in the second section, how contemporary controversies about the physician’s role in managed care take root in medicine’s past. In the final two sections, I revisit both the historical analysis and its application to contemporary debates. I argue that historical narratives (...) can function as “master narratives” that suppress or leave out historical facts. I bring to the surface what is covered up by the master narrative approach, and show its relevance to contemporary ethical debates. I conclude by proposing that preserving the integrity of medicine will require modifying the master narratives we tell about physicians. The integrity of medicine also offers new perspectives for thinking about managed care and the broader topic of health care reform. (shrink)

Background: Discussing treatment risks has become increasingly important in medical communication. Still, despite regulations, physicians must decide how much and what kind of information to present. Objective: To investigate patients’ preference for information about a small risk of a complication of colonoscopy, and whether medical and personal factors contribute to such preference. To propose a disclosure policy related to our results. Design: Vignettes study. Setting: Department of Gastroenterology, Academic Medical Centre, the Netherlands. Patients: 810 consecutive colonoscopy patients. Intervention: A home-sent (...) questionnaire containing three vignettes. Vignettes varied in the indication for colonoscopy, complication severity and level of risk. Patients were invited to indicate their wish to be informed and the importance of such information. In addition, sociodemograhic, illness-related and psychological characteristics were assessed. Main outcome measurements: Wish to be informed and importance of information. Results: Of 810 questionnaires, 68% were returned. Patients generally wished to be informed about low-risk complications, regardless of the indication for colonoscopy or the severity of the complication. The level of risk did matter, though (OR = 2.48, SE = 0.28, p = 0.001). The information was considered less important if done for population screening purposes or diagnosis of colon cancer, if the complication was less severe (bleeding) and if the risk was smaller (0.01% and 0.1%). Patients’ information preference was also related to age, mood and coping style. Limitations: Difficulty of vignettes. Conclusions: Patients generally wish to be informed about all possible risks. However, this might become uninformative. A stepwise approach is suggested. (shrink)

Background: Nurses, social workers, and medical residents are ethically mandated to engage in policy advocacy to promote the health and well-being of patients and increase access to care. Yet, no instrument exists to measure their level of engagement in policy advocacy. Research objective: To describe the development and validation of the Policy Advocacy Engagement Scale, designed to measure frontline healthcare professionals’ engagement in policy advocacy with respect to a broad range of issues, including patients’ ethical rights, quality of care, culturally (...) competent care, preventive care, affordability/accessibility of care, mental healthcare, and community-based care. Research design: Cross-sectional data were gathered to estimate the content and construct validity, internal consistency, and test–retest reliability of the Policy Advocacy Engagement Scale. Participants and context: In all, 97 nurses, 94 social workers, and 104 medical residents were recruited from eight acute-care hospitals in Los Angeles County. Ethical considerations: Informed consent was obtained via Qualtrics and covered purposes, risks and benefits; voluntary participation; confidentiality; and compensation. Institutional Review Board approval was obtained from the University of Southern California and all hospitals. Findings: Results supported the validity of the concept and the instrument. In confirmatory factor analysis, seven items loaded onto one component with indices indicating adequate model fit. A Pearson correlation coefficient of.36 supported the scale’s test–retest stability. Cronbach’s α of.93 indicated strong internal consistency. Discussion: The Policy Advocacy Engagement Scale demonstrated satisfactory psychometric properties in this initial test. Findings should be considered within the context of the study’s limitations, which include a low response rate and limited geographic scope. Conclusion: The Policy Advocacy Engagement Scale appears to be the first validated scale to measure frontline healthcare professionals’ engagement in policy advocacy. With it, researchers can analyze variations in professionals’ levels of policy advocacy engagement, understand what factors are associated with it, and remedy barriers that might exist to their provision of it. (shrink)

Recent empirical work on the concept of intentionality suggests that people’s assessments of whether an action is intentional are subject to uncertainty. Some researchers have gone so far as to claim that different people employ different concepts of intentional action. These possibilities have motivated a good deal of work in the relatively new field of experimental philosophy. The findings from this empirical research may prove to be relevant to medical ethics. In this article, we address this issue head on. We (...) first describe a study we conducted on intention ascription. Drawing on recent work in experimental philosophy, we investigated the possibility that the ascription of intentions to clinical actors in clinical settings is influenced by prior judgments about the goodness or badness of the consequences of the action in question. Our study was modeled on experimental studies in other contexts that have shown that people, when presented with a range of scenarios, are more likely to classify a side effect of an action as intended if the side effect is negative or reflects poorly on the actor than if it is positive or reflects well on the actor. We investigated whether this asymmetry in intention ascriptions was also present among physicians who were asked to ascribe intentions to clinical actors in certain well-defined clinical scenarios. After describing the study and its results, we discuss its implications for medical ethics. (shrink)

Contemporary bioethics has evolved over the past 40 years predominantly as a “Western” construct drawing fundamental inspiration for its conceptual and methodological frameworks from secular, Anglo-American philosophical traditions. American bioethicists can be credited with playing a defining role in the globalization of this new discipline to the developing countries of the world, but in this process, in the words of LaFleur, “Bioethics has become international without becoming internationalized.” Among the criticisms leveled against the dominant American model of bioethics is that (...) in its focus on universalism it ignores local cultural and religious influences that are vital to the comprehension of the moral life in many societies. Medical sociologist Renée C. Fox and historian Judith P. Swazey have termed this as a form of “cultural myopia.”. (shrink)

Currently, value sensitive design (VSD) does not commit to a particular ethical theory. Critiques contend that without such an explicit commitment, VSD lacks a methodology for distinguishing genuine moral values from mere stakeholders-preferences and runs the risk of attending to a set of values that is unprincipled or unbounded. We argue that VSD practitioners need to complement it with an ethical theory. We argue in favour of a mid-level ethical theory to fulfil this role.

BackgroundThis manuscript presents a framework to guide the identification and assessment of ethical opportunities and challenges associated with electronic patient records (EPR). The framework is intended to support designers, software engineers, health service managers, and end-users to realise a responsible, robust and reliable EPR-enabled healthcare system that delivers safe, quality assured, value conscious care.MethodsDevelopment of the EPR applied ethics framework was preceded by a scoping review which mapped the literature related to the ethics of EPR technology. The underlying assumption behind (...) the framework presented in this manuscript is that ethical values can inform all stages of the EPR-lifecycle from design, through development, implementation, and practical application.ResultsThe framework is divided into two parts: context and core functions. The first part ‘context’ entails clarifying: the purpose(s) within which the EPR exists or will exist; the interested parties and their relationships; and the regulatory, codes of professional conduct and organisational policy frame of reference. Understanding the context is required before addressing the second part of the framework which focuses on EPR ‘core functions’ of data collection, data access, and digitally-enabled healthcare.ConclusionsThe primary objective of the EPR Applied Ethics Framework is to help identify and create value and benefits rather than to merely prevent risks. It should therefore be used to steer an EPR project to success rather than be seen as a set of inhibitory rules. The framework is adaptable to a wide range of EPR categories and can cater for new and evolving EPR-enabled healthcare priorities. It is therefore an iterative tool that should be revisited as new EPR-related state-of-affairs, capabilities or activities emerge. (shrink)

Opponents of male circumcision have increasingly used human rights positions to articulate their viewpoint. We characterize the meaning of the term “human rights.” We discuss these human rights arguments with special attention to the claims of rights to an open future and to bodily integrity. We offer a three-part test under which a parental decision might be considered an unacceptable violation of a child's right. The test considers the impact of the practice on society, the impact of the practice on (...) the individual, and the likelihood of adverse impact. Infant circumcision is permissible under this test. We conclude that infant circumcision may be proscribed as violating local norms, even though it does not violate human rights. (shrink)

ZusammenfassungAusgangspunkt dieses Beitrags ist die Frage, wie die vier ethischen Prinzipien äztlichen Handelns – Respekt vor der Autonomie, Wohlergehen des Patienten, Schadensvermeidung und Gleichbehandlung – in der Berufspraxis realisiert werden können. Am Arzt-Patienten-Verhältnis wird die ethische Grundlegung jedes medizinischen Handelns erläutert, die auch das Lernen aus negativen Behandlungsverläufen umfasst. Um die Möglichkeiten für solche Lernprozesse untersuchen zu können, wird vorab eine Unterscheidung zwischen Fehler und Misserfolg vorgenommen. Als Handlungsansatz zur Aufarbeitung zahnärztlicher Misserfolge wird anhand einer empirischen Studie die Methodik des (...) Triadengesprächs vorgestellt. In diesen Gesprächen wurden 21 Misserfolge aus der Praxis reflektiert und rekonstruiert. Es wird aufgezeigt, ob und wie mit der Methode ein verändertes Verständnis des zahnärztlichen Misserfolgs ermöglicht wurde. Schließlich wird das Verfahren aus der Sicht aller an der Studie beteiligten Zahnärzte evaluiert. Die Ergebnisse der Studie zeigen, dass das Triadengespräch als Möglichkeit des expansiven Lernens eine exponierte Stellung erlangen kann. Das daraus resultierende Erfahrungskapital zahnmedizinischer Praktiker hat sodann Einfluss auf das Professionswissen und lässt gleichzeitig eine offene Kultur zum Lernen aus Misserfolgen entstehen. Abschließend werden die ethischen Implikationen des Umgangs mit Misserfolgen im Kontrast zum Umgang mit Fehlern erörtert. (shrink)

BackgroundElectronic patient record (EPR) technology is a key enabler for improvements to healthcare service and management. To ensure these improvements and the means to achieve them are socially and ethically desirable, careful consideration of the ethical implications of EPRs is indicated. The purpose of this scoping review was to map the literature related to the ethics of EPR technology. The literature review was conducted to catalogue the prevalent ethical terms, to describe the associated ethical challenges and opportunities, and to identify (...) the actors involved. By doing so, it aimed to support the future development of ethics guidance in the EPR domain.MethodsTo identify journal articles debating the ethics of EPRs, Scopus, Web of Science, and PubMed academic databases were queried and yielded 123 eligible articles. The following inclusion criteria were applied: articles need to be in the English language; present normative arguments and not solely empirical research; include an abstract for software analysis; and discuss EPR technology.ResultsThe medical specialty, type of information captured and stored in EPRs, their use and functionality varied widely across the included articles. Ethical terms extracted were categorised into clusters ‘privacy’, ‘autonomy’, ‘risk/benefit’, ‘human relationships’, and ‘responsibility’. The literature shows that EPR-related ethical concerns can have both positive and negative implications, and that a wide variety of actors with rights and/or responsibilities regarding the safe and ethical adoption of the technology are involved.ConclusionsWhile there is considerable consensus in the literature regarding EPR-related ethical principles, some of the associated challenges and opportunities remain underdiscussed. For example, much of the debate is presented in a manner more in keeping with a traditional model of healthcare and fails to take account of the multidimensional ensemble of factors at play in the EPR era and the consequent need to redefine/modify ethical norms to align with a digitally-enabled health service. Similarly, the academic discussion focuses predominantly on bioethical values. However, approaches from digital ethics may also be helpful to identify and deliberate about current and emerging EPR-related ethical concerns. (shrink)

In this paper, for the benefit of reflection processes in clinical and in local, regional, and national priority-setting, we aim to develop an ethical theoretical framework that includes both ethical principles and medium-range narratives. We present our suggestion in the particular case of having to choose between treatment interventions for attention deficit hyperactivity disorder (ADHD) and treatment interventions for other conditions or diseases, under circumstances of scarcity. In order to arrive at our model, we compare two distinct ethical approaches: a (...) generalist (principles) approach and a particularist (narratives) approach. Our focus is on Sweden, because in Sweden prioritization in healthcare is uniquely governmentally regulated by the “ethics platform.” We will present a (fictional) scenario to analyse the strengths and weaknesses of the generalist principled perspective of the ethics platform and the particularist perspective of narrative ethics. We will suggest an alternative (moderately particularist) approach to prioritization, which we dub a “principles plus medium-range narratives” approach. Notwithstanding the undeniably central role of principles in distributive justice, we claim that medium-range narratives concerning individuals or groups who stand to benefit or lose from ADHD prioritization practices should also be read or listened to and taken into account at all levels of priority-setting. These narratives are expected to ethically optimize clinical priority-setting, as well as that undertaken at local, regional, and national levels. (shrink)

High-functioning individuals with autism spectrum disorder typically lack cognitive empathy, compromising their moral agency from both a Kantian and a Humean perspective. Nevertheless, they are capable of exhibiting moral behavior, and sometimes, they exhibit what may be deemed ‘super-moral’ behavior. The empathy deficit poses, to varying degrees, limitations with respect to their moral motivation and moral agency. To compensate for this deficit, individuals with HF-ASD rely primarily, and justifiably, on the formation and application of moral rules. Educators who focus predominantly (...) on empathy, however, may be less effective in the moral education of individuals with HF-ASD because they neglect the preference for rules of the latter. In this article, I argue that an individualized balance of empathy-based and rule-based strategies in the context of moral education is needed to assist individuals with HF-ASD in their challenges with moral motivation and moral agency. (shrink)

Is it morally justifiable to force non-consenting pregnant women to submit to caesarean surgery to save their fetus in distress? Even though proponents and opponents largely agree on the interests at stake, such as the health and life of the fetus and the respect for bodily integrity and autonomy of pregnant women, they disagree on which moral weight to attach to these interests. This is why disagreements about the justifiability of forced caesareans tend to be pervasive and intractable. To sidestep (...) this deadlock, we will focus on conditions that give rise to the ‘caesarean dilemma’ in the first place, namely the conflict between inherent norms and values medical professionals are committed to by virtue of being a medical professional. Using the reflective equilibrium, we will test the opponents’ and proponents’ considered judgments about forced caesareans against the norms and values they—as medical professionals—are committed to and determine whether they are coherent. Subsequently we will identify the proponents’ incoherencies between the considered judgments and norms and values they are committed to and conclude that as long as these incoherencies are in place, forced caesareans are morally impermissible. (shrink)

BackgroundValue sensitivity – the ability to recognize value-related issues when they arise in practice – is an indispensable competence for medical practitioners to enter decision-making processes related to ethical questions. However, the psychological competence of value sensitivity is seldom an explicit subject in the training of medical professionals. In this contribution, we outline the traditional concept of moral sensitivity in medicine and its revised form conceptualized as value sensitivity and we propose an instrument that measures value sensitivity.MethodsWe developed an instrument (...) for assessing the sensitivity for three value groups in a four step procedure: 1) value identification ; 2) value representation ; 3) vignette construction and quality evaluation ; and 4) instrument validation by comparing nursing professionals with hospital managers.ResultsWe find that nursing professionals recognize and ascribe importance to principle-related issues more than professionals from hospital management. The latter are more likely to recognize and ascribe importance to strategy-related issues.ConclusionsThese hypothesis-driven results demonstrate the discriminatory power of our newly developed instrument, which makes it useful not only for health care professionals in practice but for students and people working in the clinical context as well. (shrink)

The term, “bioethics” was coined in 1970 by American cancerologist V. R. Potter. In the few decades since, the field of bioethics has emerged as an important discipline. The field has attained a remarkable degree of public recognition in a relatively short period of time. The “right to die” cases such as In re Quinlan placed bioethical issues on the front pages. Although the discipline is of recent vintage, the past quarter century has witnessed a flurry of scholarly activity, creating (...) a substantial body of bioethical literature. Moreover, the bioethics movement has manifested itself in institutional expressions. Universities and medical schools have added courses in bioethics to their curricula. In 1974, federal legislation and regulations mandated that federal grantees conducting human subjects research establish institutional review boards to safeguard subjects’ welfare, and even absent a legislative mandate numerous hospitals created ethics committees. Centers and institutes, devoted exclusively to the study of bioethical issues, have been founded. (shrink)

The term, “bioethics” was coined in 1970 by American cancerologist V. R. Potter. In the few decades since, the field of bioethics has emerged as an important discipline. The field has attained a remarkable degree of public recognition in a relatively short period of time. The “right to die” cases such as In re Quinlan placed bioethical issues on the front pages. Although the discipline is of recent vintage, the past quarter century has witnessed a flurry of scholarly activity, creating (...) a substantial body of bioethical literature. Moreover, the bioethics movement has manifested itself in institutional expressions. Universities and medical schools have added courses in bioethics to their curricula. In 1974, federal legislation and regulations mandated that federal grantees conducting human subjects research establish institutional review boards to safeguard subjects’ welfare, and even absent a legislative mandate numerous hospitals created ethics committees. Centers and institutes, devoted exclusively to the study of bioethical issues, have been founded. (shrink)

Much of the human research conducted in the United States or by U.S. researchers is regulated by the Common Rule. The Common Rule reflects the decision of 17 federal agencies, including the Department of Health and Human Services, to require that investigators follow the same rules for conducting human research., though there is significant overlap with the Common Rule.) Many of the obligations delineated in the Common Rule can be traced back to the work of the National Commission for the (...) Protection of Human Subjects of Biomedical and Behavioral Research. The National Commission was appointed in 1974 as part of the National Research Act in response to revelations about serious abuses involving human subjects, most notably the Tuskegee/United States Public Health Service Syphilis Study. (shrink)

I argue that valid informed consent is ethically required for organ donation from individuals declared dead using neurological criteria. Current policies in the U.S. do not require this and, not surprisingly, current practices inhibit the possibility of informed consent. Relevant information is withheld, opportunities to ensure understanding and appreciation are extremely limited, and the ability to make and communicate a free and voluntary decision is hindered by incomplete disclosure and other practices. Current practices should be revised to facilitate valid informed (...) consent for organ donation. (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)

The use of Intelligent Assistive Technology in dementia care opens the prospects of reducing the global burden of dementia and enabling novel opportunities to improve the lives of dementia patients. However, with current adoption rates being reportedly low, the potential of IATs might remain under-expressed as long as the reasons for suboptimal adoption remain unaddressed. Among these, ethical and social considerations are critical. This article reviews the spectrum of IATs for dementia and investigates the prevalence of ethical considerations in the (...) design of current IATs. Our screening shows that a significant portion of current IATs is designed in the absence of explicit ethical considerations. These results suggest that the lack of ethical consideration might be a codeterminant of current structural limitations in the translation of IATs from designing labs to bedside. Based on these data, we call for a coordinated effort to proactively incorporate ethical considerations early in the design and development of new products. (shrink)

Decisions on older people’s fitness to drive an automobile are in many cases evaluative and normative. These challenging decisions need to be made at both policy and individual levels. With an ageing population, it is important that this decision-making about older drivers is appropriate and fair, but little work has examined the ethical values that should inform our approach to this issue. This essay concerns the ethical values and framework around older people and driving. I argue that decision-making about older (...) drivers should include a consideration of older people’s mobility and the promotion of individual welfare. Drawing on empirical insights and ethical theory, this essay firstly argues that a traditional safety-focused perspective on older drivers is potentially deficient, misleading, and detrimental, and should be rethought. Secondly, it is shown that driving is both instrumentally and essentially linked to older people’s welfare. Decision-making should therefore include an ethical principle of beneficence. And thirdly, it is argued that a consideration of individual welfare in decisions about older drivers is vital to address important societal trends. (shrink)

Decision-making capacity is a vital concept in law, ethics, and clinical practice. Two legal cases where capacity literally had life and death significance are NHS Trust v Ms T [2004] and Kings College Hospital v C [2015]. These cases share another feature: unusual beliefs. This essay will critically assess the concept of capacity, particularly in relation to the unusual beliefs in these cases. Firstly, the interface between capacity and unusual beliefs will be examined. This will show that the “using and (...) weighing of information” is the pivotal element in assessment. Next, this essay will explore the relationship between capacity assessment and a decision’s “rationality.” Then, in light of these findings, the essay will appraise the judgments in NHS v T and Kings v C, and consider these judgments’ implications. More broadly, this essay asks: Does capacity assessment examine only the decision-making process, or is it also influenced by a decision’s rationality? If influenced by rationality, capacity assessment has the potential to become “a search and disable policy aimed at those who are differently orientated in the human life-world”. In contentious cases like these, this potential deserves attention. (shrink)

BackgroundDespite its ubiquity in academic research, the phrase ‘ethical challenge(s)’ appears to lack an agreed definition. A lack of a definition risks introducing confusion or avoidable bias. Conceptual clarity is a key component of research, both theoretical and empirical. Using a rapid review methodology, we sought to review definitions of ‘ethical challenge(s)’ and closely related terms as used in current healthcare research literature.MethodsRapid review to identify peer-reviewed reports examining ‘ethical challenge(s)’ in any context, extracting data on definitions of ‘ethical challenge(s)’ (...) in use, and synonymous use of closely related terms in the general manuscript text. Data were analysed using content analysis. Four databases (MEDLINE, Philosopher’s Index, EMBASE, CINAHL) were searched from April 2016 to April 2021.Results393 records were screened, with 72 studies eligible and included: 53 empirical studies, 17 structured reviews and 2 review protocols. 12/72 (17%) contained an explicit definition of ‘ethical challenge(s), two of which were shared, resulting in 11 unique definitions. Within these 11 definitions, four approaches were identified: definition through concepts; reference to moral conflict, moral uncertainty or difficult choices; definition by participants; and challenges linked to emotional or moral distress. Each definition contained one or more of these approaches, but none contained all four. 68/72 (94%) included studies used terms closely related to synonymously refer to ‘ethical challenge(s)’ within their manuscript text, with 32 different terms identified and between one and eight different terms mentioned per study.ConclusionsOnly 12/72 studies contained an explicit definition of ‘ethical challenge(s)’, with significant variety in scope and complexity. This variation risks confusion and biasing data analysis and results, reducing confidence in research findings. Further work on establishing acceptable definitional content is needed to inform future bioethics research. (shrink)

The American Journal of Bioethics, Volume 12, Issue 1, Page 35-36, January 2012.

This paper discusses the notion of using international shipping legislation to provide healthcare technologies to inhabitants of a country on a ship in international waters based just outside the country’s border. This allows technologies that would otherwise be unavailable, regulated or banned to the citizens of a particular nation to be available, just offshore. This is because in international waters ships are governed by the laws of their home nation not those they are nearby. We focus on the example suggested (...) recently in the UK of “sperm ships”, flying Danish flags to circumvent IVF regulation in the UK. While we acknowledge that this general strategy could be used to do good by providing healthcare where it would not be otherwise available, it also provides a significant challenge to the effective sovereignty of the state and its ability to regulate healthcare technologies for the benefit of its citizens. We discuss this challenge to the regulation of healthcare and suggest a few tentative solutions. (shrink)

There is considerable controversy about the mandatory ethics review of research. This paper engages with the arguments offered by Murray Dyck and Gary Allen against mandatory review, namely, that this regulation fails to reach the standards that research ethics committees apply to research since it is harmful to the ethics of researchers, has little positive evidence base, leads to significant harms (through delaying valuable research) and distorts the nature of research. As these are commonplace arguments offered by researchers against regulation (...) it is useful to assess their strength and the conclusion that they are taken to support, namely, that we ought to move back to a system of trust in researchers without compulsory regulation. Unfortunately, these arguments are at best weak and to some degree come into conflict in terms of supporting the desired conclusion. (shrink)

A selection of recent sociological literature dealing with bioethics, concentrating particularly on its interface with research ethics, is reviewed to reveal that the two disciplines of bioethics and sociology have tendencies to approach subject matters from opposed perspectives. These differences in approach have now been generally recognized, accepted and accommodated by proponents of both disciplines. A turning point in the relationship between the two disciplines may have been reached which augers greater mutual respect, appreciation and even learning.

Saunkeah et al. argue convincingly that although respect for Tribal sovereignty is often invoked as a core justification for Tribal research protections, an expanded ethical framework is req...

In the first part of the paper, the author discusses the origin and obligation of the medical profession and argues that the duty of fidelity in the context of a patient–professional relationship (PPR) is the central obligation of medical professionals. The duty of fidelity entails seeking the patient’s best interests even at the expense of the professional’s own, and refusing to treat a risk-patient infected by SARS is a breach of fidelity because the medical professional is involved in a situation (...) of conflict of interests and places his/her own health interests ahead of the patient. The author attributes the failure to the fact that professional ethical codes are not legally enforceable, and this failure at the microethical level damages the integrity of the profession at the macroethical level. The author argues that professional autonomy must be subordinated to professional fidelity for the medical profession to survive as a social institution. In the second part of the paper, the author shows that the PPR has most of the important attributes of a fiduciary relationship, and analyzes several important court cases in some common law jurisdictions to illustrate the increasing importance of fiduciary law in adjudicating disputes between patients and medical professionals, and appeals to law courts and legislatures to apply more stringent fiduciary principles on the medical profession to ensure that the professional duty of fidelity is enforced and the goal of medicine fulfilled for the interests of members of the community who has established the medical profession in the first place. (shrink)

International statements about social work ethics have been criticized as imposing Western values in non-Western contexts. Two forms of this criticism can be identified in recent literature, one ?strong? in that it calls for each cultural context to generate its own relevant values, the other ?qualified? in that while it seeks basic common values it calls for these to be interpreted with cultural sensitivity. Such arguments raise a particular problem with the notion of human rights as a foundation for social (...) work ethics. In response, the plurality of values is examined and the concept of ?human capabilities? is suggested as a basis for values that cross cultural differences. The implications of this notion are explored using the example of responses to domestic violence. It is suggested that such an approach could be fruitful as a basis for future international dialogue concerning social work ethics. (shrink)

Contemporary accounts of medical ethics and professionalism emphasize the importance of social justice as an ideal for physicians. This ideal is often specified as a commitment to attaining the universal availability of some level of health care, if not of other elements of a “decent minimum” standard of living. I observe that physicians, in general, have not accepted the importance of social justice for professional ethics, and I further argue that social justice does not belong among professional norms. Social justice (...) is a norm of civic rather than professional life; professional groups may demand that their members conform to the requirements of citizenship but ought not to require civic virtues such as social justice. Nor should any such requirements foreclose reasonable disagreement as to the content of civic norms, as requiring adherence to common specifications of social justice would do. Demands for any given form of social justice among physicians are unlikely to bear fruit as medical education is powerless to produce this virtue. (shrink)

The increasing accuracy of algorithms to predict values and preferences raises the possibility that artificial intelligence technology will be able to serve as a surrogate decision-maker for incapacitated patients. Following Camillo Lamanna and Lauren Byrne, we call this technology the autonomy algorithm. Such an algorithm would mine medical research, health records, and social media data to predict patient treatment preferences. The possibility of developing the AA raises the ethical question of whether the AA or a relative ought to serve as (...) surrogate decision-maker in cases where the patient has not issued a medical power of attorney. We argue that in such cases, and against the standard practice of vesting familial surrogates with decision making authority, the AA should have sole decision-making authority. This is because the AA will likely be better at predicting what treatment option the patient would have chosen. It would also be better at avoiding bias and, therefore, choosing in a more patient-centered manner. Furthermore, we argue that these considerations override any moral weight of the patient’s special relationship with their relatives. (shrink)

Although death statutes permitting physicians to declare brain death are relatively uniform throughout the United States, academic debate persists over the equivalency of human death and brain death. Alan Shewmon showed that the formerly accepted integration rationale was conceptually incomplete by showing that brain-dead patients demonstrated a degree of integration. We provide a more complete rationale for the equivalency of human death and brain death by defending a deeper understanding of the organism as a whole and by using a novel (...) strategy with shared objectives to justify death determination criteria. Our OaaW account describes different types of OaaW, defining human death as the loss of status as a human OaaW. We defend human death as similar to nonhuman death in terms of wakefulness, but also distinct in terms of the sui generis properties, particularly conscious awareness. We thereby defend the equivalency of brain death and human death using a resulting neurocentric rationale. (shrink)

As patient autonomy expands, a highly controversial issue has emerged. Should the advance directives of refusing life-saving treatments or requesting euthanasia of persons with dementia who express changed minds or are often in a happy state be fulfilled? There are two autonomy-related positions. The mainstream position in philosophical discussions supports the priority of ADs based on precedent autonomy. Buchanan and Brock, and Dworkin represent this view. The other position supports the priority of PWDs’ current wishes based on minimal autonomy represented (...) by Jaworska. By rethinking the theoretical and practical challenges of the two positions and their arguments respectively, the paper concludes that in such a scenario, the priority of ADs is morally indefensible, and it is also challenging to establish minimal autonomy defend the moral priority of PWDs’ current wishes. For PWDs whose past values, beliefs, and preferences fade away but who retain apparent intrinsic sentience of well-being, a modified defined quality-of-life approach serves as another reasonable basis in their medical decision-making, and the ADs and the QoL should be further merged to reduce the uncertainty of the grey zone. (shrink)