Gliomas are diffuse and invasive brain tumors with the nefarious ability to evade even seemingly draconian treatment measures. Here we introduce a simple mathematical model for drug delivery of chemotherapeutic agents to treat such a tumor. The model predicts that heterogeneity in drug delivery related to variability in vascular density throughout the brain results in an apparent tumor reduction based on imaging studies despite continual spread beyond the resolution of the imaging modality. We discuss a clinical example for which the (...) model-predicted scenario is relevant. The analysis and results suggest an explanation for the clinical problem of the long-standing confounding observation of shrinkage of the lesion in certain areas of the brain with continued growth in other areas. (shrink)

Our objective was to better understand the values and ethical dilemmas surrounding advance care planning through stories told by registered nurses and licensed social workers, who were employed as care managers within Area Agencies on Aging. We conducted eight focus groups in which care managers were invited to tell their stories and answer open-ended questions focusing on their interactions with consumers receiving home-based long-term care. Using narrative analysis to understand how our participants thought through particular experiences and what they valued, (...) we identified seven themes representative of their work with consumers and families: humility, respect, responsibilities, boundaries, empowerment, courage, and veracity. (shrink)

Background: Clinical genomic implementation studies pose challenges for informed consent. Consent forms often include complex language and concepts, which can be a barrier to diverse enrollment, and these studies often blur traditional research-clinical boundaries. There is a move toward self-directed, web-based research enrollment, but more evidence is needed about how these enrollment approaches work in practice. In this study, we developed and evaluated a literacy-focused, web-based consent approach to support enrollment of diverse participants in an ongoing clinical genomic implementation study. (...) Methods: As part of the Cancer Health Assessments Reaching Many (CHARM) study, we developed a web-based consent approach that featured plain language, multimedia, and separate descriptions of clinical care and research activities. CHARM offered clinical exome sequencing to individuals at high risk of hereditary cancer. We interviewed CHARM participants about their reactions to the consent approach. We audio recorded, transcribed, and coded interviews using a deductively and inductively derived codebook. We reviewed coded excerpts as a team to identify overarching themes. Results: We conducted 32 interviews, including 12 (38%) in Spanish. Most (69%) enrolled without assistance from study staff, usually on a mobile phone. Those who completed enrollment in one day spent an average of 12 minutes on the consent portion. Interviewees found the information simple to read but comprehensive, were neutral to positive about the multimedia support, and identified increased access to testing in the study as the key difference from clinical care. Conclusions: This study showed that interviewees found our literacy-focused, web-based consent approach acceptable; did not distinguish the consent materials from other online study processes; and valued getting access to testing in the study. Overall, conducting empirical bioethics research in an ongoing clinical trial was useful to demonstrate the acceptability of our novel consent approach but posed practical challenges. (shrink)

Translational ethics (TE) has been developed into a specific approach, which revolves around the argument that strategies for bridging the theory‐practice gap in bioethics must themselves be justified on ethical terms. This version of TE incorporates normative, empirical and foundational ethics research and continues to develop through application and in the face of new ethical challenges. Here, I explore the idea that the academic field of bioethics has not yet sufficiently analysed its own philosophical foundation for how it can, and (...) should, be practically relevant; neither has it comprehensively discussed the limitations on what impacts bioethicists should pursue. As a result, there has not been adequate training on how to suitably and appropriately impact real‐world practices. Moreover, bioethical perspectives are often competing with other strong interests, for example, economic and political, which may weaken their impact on policy‐making. The TE approach I propose can not only facilitate practical impacts of academic bioethics by being better informed by real‐world ethical issues but it also supports targeted and ethical justifications of the actual impact of academic work in real‐world contexts. In this paper, I clarify the premises for this TE approach, identify further challenges and sketch out potential solutions for the implementation of this methodological framework. (shrink)

In the face of environmental crises such as climate change, pollution and biodiversity loss—which all adversely impact on health—Gils-Schmidt and Salloch explore whether physicians can be justified in taking climate issues into account in clinical care.1 While their approach centres on the ‘climate-sensitive’ decisions, physicians can carry out on the micro-level of clinical decision-making, they encourage further discussions on how climate-related issues can be included across different levels of decision-making in healthcare. We propose a list of tasks and a model (...) to assist with navigating the range of factors and structural elements an environmentally sensitive ethics must address. Stephen Gardiner’s notion of a perfect moral storm is central to understanding these issues.2 Gardiner describes how a perfect moral storm occurs in the centre of three overlapping conditions for human action and policymaking in the face of climate change. This storm is driven by: (1) a lack of interest among current generations to meet global needs and accommodate the well-being of future generations, (2) a lack of ecological concerns for other parts of nature than humans and (3) weak ethical and political theories and institutions shaping policy decisions on issues with severe implications across borders and generations. Moreover, these conditions are embedded in the existing, complex world of ethically unjustified power imbalances and social injustice. The growing awareness of healthcare’s climate footprint has amplified and accelerated global, grassroots action to make healthcare more environmentally friendly. This includes incorporating environmental impacts into quality improvement methodologies, building communities of practice to explore how to make …. (shrink)

Should we let personal responsibility for health-related behavior influence the allocation of healthcare resources? In this paper, we clarify what it means to be responsible for an action. We rely on a crucial conceptual distinction between being responsible and holding someone responsible, and show that even though we might be considered responsible and blameworthy for our health-related actions, there could still be well-justified reasons for not considering it reasonable to hold us responsible by giving us lower priority. We transform these (...) philosophical considerations into analytical use first by assessing the general features of health-related actions and the corresponding healthcare needs. Then, we identify clusters of structural features that even adversely affected people cannot reasonably deny constitute actions for which they should be held responsible. We summarize the results in an analytical framework that can be used by decision-makers when considering personal responsibility for health as a criterion for setting priorities. (shrink)

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

The acknowledgement of basic human vulnerability in relationships between mental health service users and professionals working in community-based mental health services (in Norway) was a starting point. The purpose was to explore how users of these services describe and make sense of their meetings with other people. The research is collaborative, with researcher and person with experienced-based knowledge cooperating through the research process. Data is derived from 19 interviews with 11 people who depend on mental health services for assistance at (...) least three times a week. Data is analysed according to the Interpretative Phenomenological Analysis (IPA). Results confirm that reciprocity is fundamental for relationships, and that recognizing the individual entails personal involvement. The participants describe a struggle, and recognizing this struggle may help the professional to achieve a deeper understanding of the individual. (shrink)

There has been much discussion about how to obtain legitimacy at macro-level priority setting in health care by use of fair procedures, but how should we consider priority setting by individual clinicians or health workers at the micro-level? Despite the fact that just health care totally hinges upon their decisions, surprisingly little attention seems being paid to the legitimacy of these decisions. This paper addresses the following question: what are the conditions that have to be met in order to ensure (...) that individual claims on health care are well aligned with an overall concept of just health care? Drawing upon a distinction between individual and aggregated needs, I argue that even though we assume the legitimacy of macro-level guidelines, this legitimacy is not directly transferable to decisions at micro-level simply by adherence to the guidelines’ recommendation. Further, I argue that individual claims are subject to the formal principle of equality and the demands of vertical and horizontal equity in a way that gives context- and patient-related equity concerns precedence over equity concerns captured at the macro-level. I conclude that if we aim to achieve just health care, we need to develop a complementary framework for legitimising individual judgment of patients’ claims on health care resources. Moreover, I suggest the basic structure of such a framework. (shrink)

Volume 20, Issue 4, May 2020, Page 71-73.

Clinical ethical support services (CESS) represent a multifaceted field of aims, consultancy models, and methodologies. Nevertheless, the overall aim of CESS can be summed up as contributing to healthcare of high ethical standards by improving ethically competent decision-making in clinical healthcare. In order to support clinical care adequately, CESS must pay systematic attention to all real-life ethical issues, including those which do not fall within the ‘favourite’ ethical issues of the day. In this paper we attempt to capture a comprehensive (...) overview of categories of ethical tensions in clinical care. We present an analytical exposition of ethical structural features in judgement-based clinical care predicated on the assumption of the moral equality of human beings and the assessment of where healthcare contexts pose a challenge to achieving moral equality. The account and the emerging overview is worked out so that it can be easily contextualized with regards to national healthcare systems and specific branches of healthcare, as well as local healthcare institutions. By considering how the account and the overview can be applied to i) improve the ethical competence of healthcare personnel and consultants by broadening their sensitivity to ethical tensions, ii) identify neglected areas for ethical research, and iii) clarify the ethical responsibility of healthcare institutions' leadership, as well as specifying required institutionalized administration, we conclude that the proposed account should be considered useful for CESS. (shrink)

The overall aim of this article is to discuss the organization of limit setting in healthcare in terms of legitimacy. We argue there is a strong ethical demand that such processes should be arranged to provide adversely affected people well-justified reasons to confer legitimacy to the processes despite favouring a different decision-making outcome. Two increasingly popular approaches, Accountability for Reasonableness (A4R) and Multi-Criteria Decision Analysis (MCDA), can both be applied to support legitimate decision-making processes. However, the role played by ‘fair-minded (...) people’ in the A4R framework can be shown to undermine an adequate conceptualization of legitimacy according to the ethical demand. We discuss and specify conditions enabling A4R to meet this ethical demand when being implemented in a real-world setting without having to renounce the aim of striving for ‘reasonableness’ and impartiality. The methodological approach MCDA describes how to arrange for transparent resource allocation. This approach does not encompass any normative guidance on how to shape limit settings in terms of ‘reasonableness’; it basically promotes ‘rational’ decisions. We discuss how this practical methodology can be integrated with the theoretical A4R framework to meet the ethical demand while at the same time promoting politically required impartiality of healthcare limit setting. (shrink)

Denne artikkelen tar utgangspunkt i et skille mellom samfunnsstrukturer som avgrenser legers skjønnsmessige utfoldelse på den ene siden, og profesjonens tilrettelegging for kultiveringen av erkjennelsesmessige ferdigheter på den annen. Ved å videreføre H. Grimen og A. Molanders anvendelse av S.E. Toulmins modell for praktisk resonnering i en klinisk kontekst redegjør jeg for legeskjønnets multidimensjonale, epistemiske struktur. Gjennomgangen viser hvordan skjønnsanvendelse i legerollen kan analyseres i henhold til en fagteknisk, en distributiv og en relasjonell dimensjon. Mot denne bakgrunnen diskuterer jeg så (...) spenninger som oppstår i skjæringspunktet mellom strukturering og kultivering av skjønnets ulike dimensjoner. Diskusjonen tydeliggjør at den medisinske profesjonen ikke kan betraktes som en selvtilstrekkelig premissleverandør når det gjelder å sikre adekvat kultivering av medlemmenes skjønnsutøvelse i en klinisk kontekst. Ved å synliggjøre og vektlegge de relevante profesjonseksterne bidragene i profesjonens pågående selvregulering kan befolkningens berettigete tillit til profesjonen styrkes ytterligere.Nøkkelord: strukturelt skjønn, epistemisk skjønn, profesjon, selvregulering, tillitEnglish summary: In Between Structures of Society and Profession: On Delimitation, Cultivation and Premises for Adequately Exercising Judgment in the Role as PhysicianThe point of departure of this article is a distinction between societal structures that delimit the discretion of the physician on the one hand and the profession's arrangements for the cultivation of the physician's judgment on the other. By developing H. Grimen and A. Molander's application of S.E. Toulmin's model for practical reasoning in a clinical context, the multi-dimensional epistemic structure of the physician's judgment in terms of technical, distributive, and relational judgment is accounted for. Against this backdrop, tensions emerging in the intersection between delimitation and cultivation of professional judgment in its various dimensions are discussed. The discussion clarifies that the medical profession is not a self-sufficient provider when it comes to ensuring an adequate cultivation of its members' judgment in a clinical context. It is argued that by emphasising and implementing the relevant external contributions to the profession's ongoing self-regulation, the public's justified trust in the medical profession can be strengthened. (shrink)

How and why does a metaphor work? What happens to us when we hear or read one? My guess is that a metaphor, because it is an erroneous statement, conflicts with our expectations. It releases, triggers, and stimulates our predisposition to detect error and to take corrective action. We do not dismiss or reject a metaphor as simply a false statement for we recognize it as a metaphor and know as [Donald] Davidson suggests that it alludes to something else that (...) we might wish to notice. It preempts our attention and propels us on a quest for the underlying truth. We are launched into a creative, inventive, pleasurable act. To turn Piaget around, to invent is to understand. For the hearer or reader of a metaphor to detect, by himself, the nature of the error and to invent his own version of the truth entails understanding and achievement and thus pleasure. Such pleasure perhaps owes its origin to, and is enhanced by an echo from, the metaphoric playfulness of childhood. A metaphor is a peremptory invitation to discovery. What is discoverable are the various allusive ties, or common attributes, between the metaphor and the underlying truth to which it points. It is plausible to guess that the pleasure, and hence power, of the metaphor depends on two factors. It is the more powerful and effective the greater the number of allusive ties discovered and the greater the speed or suddenness with which the discoveries are made. A metaphor that packs all of its allusions into one or a few words should be more effective than a metaphor on which the same allusions are scattered throughout a long chain of words or sentences. The number of allusive ties in some sense reflects how close the metaphor approaches the truth—how near it is to being on target. Perhaps the closer it is, the more compelling the urge to correct the error—like the pull of a magnet. Don R. Swanson is professor and dean of the graduate library school at the University of Chicago. (shrink)

Char et al. describe an interesting and useful approach in their paper, “Identifying ethical considerations for machine learning healthcare applications.” Their proposed framework, which see...

Obstructive sleep apnea (OSA) severely impacts sleep and has long-term health consequences. Treating sleep apnea with continuous positive airway pressure (CPAP) not only relieves obstructed breathing, but also improves sleep. CPAP improves sleep by reducing apnea-induced awakenings. CPAP may also improve sleep by enhancing features of sleep architecture assessed with electroencephalography (EEG) that maximize sleep depth and neuronal homeostasis, such as the slow oscillation and spindle EEG activity, and by reducing neurophysiological arousal during sleep (i.e., beta EEG activity). We examined (...) cross-sectional differences in quantitative EEG characteristics of sleep, assessed with power spectral analysis, in 29 adults with type 2 diabetes treated with CPAP and 24 adults undergoing SHAM CPAP treatment (total n = 53). We then examined changes in spectral characteristics of sleep as the SHAM group crossed over to active CPAP treatment (n = 19). Polysomnography (PSG) from the CPAP titration night was used for the current analyses. Analyses focused on EEG frequencies associated with sleep maintenance and arousal. These included the slow oscillation (0.5–1 Hz), sigma activity (12–16 Hz, spindle activity), and beta activity (16–20 Hz) in F3, F4, C3, and C4 EEG channels. Whole night non-rapid eye movement (NREM) sleep and the first period of NREM spectral activity were examined. Age and sex were included as covariates. There were no group differences between CPAP and SHAM in spectral characteristics of sleep architecture. However, SHAM cross-over to active CPAP was associated with an increase in relative 12–16 Hz sigma activity across the whole night and a decrease in average beta activity across the whole night. Relative slow oscillation power within the first NREM period decreased with CPAP, particularly for frontal channels. Sigma and beta activity effects did not differ by channel. These findings suggest that CPAP may preferentially enhance spindle activity and mitigate neurophysiological arousal. These findings inform the neurophysiological mechanisms of improved sleep with CPAP and the utility of quantitative EEG measures of sleep as a treatment probe of improvements in neurological and physical health with CPAP. (shrink)

ABSTRACT In this paper, I address some of the shortcomings of established clinical ethics centring on personal autonomy and consent and what I label the Doctrine of Respecting Personal Autonomy in Healthcare. I discuss two implications of this doctrine: 1) the practice for treating patients who are considered to have borderline decision‐making competence and 2) the practice of surrogate decision‐making in general. I argue that none of these practices are currently aligned with respectful treatment of vulnerable individuals. Because of ‘structural (...) arbitrariness’ in the whole process of how we assess decision‐making competence, this area is open to disrespectful treatment of people. The practice of surrogate decision‐ making on the basis of a single person's judgment is arguably not consistent with ethical and political requirements derived from the doctrine itself. In response to the inadequacies of the doctrine, I suggest a framework for reasonableness in surrogate decision‐making which might allow practice to avoid the problems above. I conclude by suggesting an extended concept of Patient Autonomy which integrates both personal autonomy and the regulative idea of morality that is required by reasonableness in deciding for non‐competent others. (shrink)

In the paper “Translational Neuroethics: A Vision for a More Integrated, Inclusive, and Impactful Field,” Wexler and Sullivan provide an insightful analysis of challenges within the field and how t...

Public health ethics is a relatively new academic field. Crucially, it is distinguished from traditional medical ethics by its focus on populations rather than individuals. Still, the ethics of public health cannot be perceived completely detached from the ethics of individuals, as populations are made up of individuals. One issue that clearly falls within the intersection of a population- and an individual based perspective on ethics is resource allocation. Resource allocation takes place at various stages within the organisation of healthcare, (...) i.e. at the micro-, meso- and macro level [3]. Resources are almost always limited, with the consequence that some healthcare is prioritised while other care is rationed. In this manner, resource allocation creates winners and losers; those who get the best care available, those who do not receive the best care and those who do not receive care at all. It seems prudent to assume that any adequate public health ethics involved in population-based decision-making will have to address all ethical aspects of resource allocation, all the way from the macrolevel policy-making process to the micro-level implementation where it affects specific and identifiable individuals. More specifically, such an ethics must be able to deal with the ethical tensions arising between population-based concerns framing the policy design process, and individual concerns in the realisation of the resource allocations. In the following, I will identify an inherent ethical tension involved in ‘legitimate resource allocation’, which is related to the challenge of meeting the ethical requirements from a population- and an individual based perspective at the same time. (shrink)

Coastal ecosystems are increasingly dominated by humans. Consequently, the human dimensions of sustainability science have become an integral part of emerging coastal governance and management practices. But if we are to avoid the harsh lessons of land management, coastal decision makers must recognize that humans are one of the more coastally dependent species in the biosphere. Management responses must therefore confront both the temporal urgency and the very real compromises and sacrifices that will be necessary to achieve a sustainable coastal (...) ecosystem, one that is economically feasible, socially just, and ecologically sound. (shrink)

In 2014, the editorial board of BMC Medical Ethics came together to devise sections for the journal that would give structure to the journal help ensure that authors’ research is matched to the most appropriate editors and help readers to find the research most relevant to them. The editorial board decided to take a practical approach to devising sections that dealt with the challenges of content management. After that, we started thinking more theoretically about how one could go about classifying (...) the field of medical ethics. This editorial elaborates and reflects on the practical approach that we took at the journal, then considers an alternative theoretically derived approach, and reflects on the possibilities, challenges and value of classifying the field more broadly. (shrink)

Academic integrity establishes a code of ethics that transfers over into the job force and is a critical characteristic in scientists in the twenty-first century. A student’s perception of cheating is influenced by both internal and external factors that develop and change through time. For students, the COVID-19 pandemic shrank their academic and social environments onto a computer screen. We surveyed science students in the United States at the end of their first COVID-interrupted semester to understand how and why they (...) believed their peers were cheating more online during a pandemic. Almost 81% of students indicated that they believed cheating occurred more frequently online than in-person. When explaining why they believed this, students touched on proctoring, cheating influences, and extenuating circumstances due to COVID-19. When describing how they believed cheating occurred more frequently online, students touched on methods for cheating and surreptitious behavior. The student reasonings were associated with four theories that have been used to examine academic dishonesty. Our results can aid institutions in efforts to quell student concerns about their peers cheating during emergencies. Interestingly, most student beliefs were mapped to planned behavior theory while only a few students were mapped to neutralization theory, suggesting it was a novel modality of assessment rather than a pandemic that shaped student perceptions. (shrink)

Frameworks for responsible data stewardship, such as that proposed by McCoy et al. (2023), are intended to encourage and provide guidelines for data processors to engage in responsible data process...

Caesarean delivery is a common and life-saving intervention. However, it involves an overall increased risk for short-term and long-term complications for both mother and child compared with vaginal delivery. From a medical point of view, healthcare professionals should, therefore, not recommend caesarean sections without any anticipated medical benefit. Consequently, caesarean sections requested by women for maternal reasons can cause conflict between professional recommendations and maternal autonomy. How can we assure ethically justified decisions in the case of caesarean sections on maternal (...) request in healthcare systems that also respect patients’ autonomy and aspire for shared decisions? In the maternal–professional relationship, which can be characterised in terms of reciprocal obligations and rights, women may not be entitled to demand a C-section. Nevertheless, women have a right to respect for their deliberative capacity in the decision-making process. How should we deal with a situation of non-agreement between a woman and healthcare professional when the woman requests a caesarean section in the absence of obvious medical indications? In this paper, we illustrate how the maternal–professional relationship is embedded in a nexus of power, trust and risk that reinforces a structural inferiority for women. To accommodate for beneficial use of power, these decision processes need to be trustworthy. We propose a framework, inspired by Lukes’ three-dimensional notion of power, which serves to facilitate trust and allows for beneficial power in shared processes of decision-making about the delivery mode for women requesting planned C-sections. (shrink)

This article examines the role of medical doctors, AI designers, and other stakeholders in making applied AI and machine learning ethically acceptable on the general premises of shared decision-making in medicine. Recent policy documents such as the EU strategy on trustworthy AI and the research literature have often suggested that AI could be made ethically acceptable by increased collaboration between developers and other stakeholders. The article articulates and examines four central alternative models of how AI can be designed and applied (...) in patient care, which we call the ordinary evidence model, the ethical design model, the collaborative model, and the public deliberation model. We argue that the collaborative model is the most promising for covering most AI technology, while the public deliberation model is called for when the technology is recognized as fundamentally transforming the conditions for ethical shared decision-making. (shrink)