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)

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)

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)

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)

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)

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)

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)

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

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)

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)

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...

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)

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)

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)

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...

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)

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...

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)

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)

The ethical principle of ‘respect for persons’ in clinical research has traditionally focused on protecting individuals’ autonomy rights, but respect for participants also includes broader, although less well understood, ethical obligations to regard individuals’ rights, needs, interests and feelings. However, there is little empirical evidence about how to effectively convey respect to potential and current participants. To fill this gap, we conducted exploratory, qualitative interviews with participants in a clinical genomics implementation study. We interviewed 40 participants in English or Spanish (...) about their experiences with respect in the study and perceptions of how researchers in a hypothetical observational study could convey respect or a lack thereof. Most interviewees were female, identified as Hispanic/Latino or non-Hispanic white, reported annual household income under US$60 000 and did not have a Bachelor’s degree ; 30% had limited health literacy. We identified four key domains for demonstrating respect: personal study team interactions, with an emphasis on empathy, appreciation and non-judgment; study communication processes, including following up and sharing results with participants; inclusion, particularly ensuring materials are understandable and procedures are accessible; and consent and authorisation, including providing a neutral informed consent and keeping promises regarding privacy protections. While the experience of respect is inherently subjective, these findings highlight four key domains that may meaningfully demonstrate respect to potential and current research participants. Further empirical and normative work is needed to substantiate these domains and evaluate how best to incorporate them into the practice of research. (shrink)

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)

When weighing up which inhaler to prescribe, a doctor may prioritise a patient’s preferences over the expected harms from the associated carbon emissions. Parker argues that this is wrong.1 Doctors have a pro-tanto duty to switch from a high-carbon metered-dose inhaler (MDI) to a low-carbon dry-powdered inhaler (DPI)—even though this provides no direct patient benefit—unless switching would undermine trust or significantly worsen a patient’s health. He goes on to state that even if DPIs are more expensive for the National Health (...) Service (NHS) then this is justified so long as it does not ‘significantly threaten’ the NHS’ ability to protect and promote health. This may appear to be a radical proposal, challenging the ethical principles of autonomy, health entitlements and justly distributed resources. However, we will claim that it is only radical in so far as one perceives (A) patient autonomy and healthcare entitlements as existing within a vacuum, unrelated to other foundational ethics concerns and (B) the health consequences of a given healthcare budget are limited solely to the designated recipients rather than all affected parties. Here, we test the claim that our responsibility for promoting patient autonomy …. (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)

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)

Medicine is not merely a job that requires technical expertise, but a profession concerned with making the best decisions and recommendations with reference to, and in consultation with, the patient. This means that the skill set required for healthcare professionals in order to provide good care is a combination of scientific knowledge, technical aptitude, and affective qualities or virtues such as compassion and empathy.

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)

Machine learning and other forms of artificial intelligence can improve parts of clinical decision making regarding the gathering and analysis of data, the detection of disease, and the provis...

The commentary brings up two topics. The first concerns whether and how a patient’s socioeconomic status should count in clinical care. We provide a brief summary of Puschel and colleagues’ view and discuss it in relation to other accounts. We share their conclusion; considering SES in clinical care can be justified from a fairness perspective. Yet, we question the claim that this is a new perspective, and argue that the reason for the claim of novelty is an insufficient use of (...) references. This leads to the second topic, which is a discussion of citation practices in philosophical/ethics papers. We describe common deviations from academic standards, and suggest how unfortunate practices can be reduced. (shrink)

Background Rationing and allocation decisions at the clinical level – bedside rationing – entail complex dilemmas that clinicians and managers often find difficult to handle. There is a lack of mechanisms and aids for promoting fair decisions, especially in hard cases. Reports indicate that clinical ethics committees sometimes handle cases that involve bedside rationing dilemmas. Can CECs have a legitimate role to play in bedside rationing? Main text Aided by two frameworks for legitimate priority setting, we discuss how CECs can (...) contribute to enhanced epistemic, procedural and political legitimacy in bedside rationing decisions. Drawing on previous work we present brief case vignettes and outline several potential roles that CECs may play, and then discuss whether these might contribute to rationing decisions becoming legitimate. In the process, key prerequisites for such legitimacy are identified. Legitimacy places demands on aspects such as the CEC’s deliberation process, the involvement of stakeholders, transparency of process, the opportunity to appeal decisions, and the competence of CEC members. On these conditions, CECs can help strengthen the legitimacy of some of the rationing decisions clinicians and managers have to make. Conclusions On specified conditions, CECs can have a well-justified advisory role to play in order to enhance the legitimacy of bedside rationing decisions. (shrink)

The concept of legitimacy is often used and emphasized in the context of setting limits in health care, but rarely described is what is actually meant by its use. Moreover, it is seldom explicitly stated how health-care workers can contribute to the matter, nor what weight should be apportioned to their viewpoints. Instead the discussion has focused on whether they should take on the role of the patients’ advocate or that of gatekeeper to the society’s resources. In this article, we (...) shed light on the role of health-care workers in limit setting and how their conferred legitimacy may support subordinators’ (i.e. citizens’) conferred legitimacy. We argue that health-care workers have an important role to play as both moral and political agents in limit setting, and delineate normative conditions that justify and facilitate health-care workers in conferring legitimacy on this kind of decision. Their role and potential impact on political limit setting does not—theoretically—affect the idea of democratic legitimacy negatively. Rather, as we suggest, by designing for limit-setting policymaking accordingly, health-care workers, as well as citizens, are more justified in conferring democratic legitimacy to health-care limit-setting decisions than if these concerns were not addressed. (shrink)

Reducing inequalities in health and the determinants of health is a widely acknowledged health policy goal, and methods for measuring inequalities and inequities in health are well developed. Yet, the evidence base is weak for how to achieve these goals. There is a lack of high-quality randomised controlled trials reporting impact on the distribution of health and non-health benefits and lack of methodological rigour in how to design, power, measure, analyse and interpret distributional impact in RCTs. Our overarching aim in (...) this paper is to contribute to the emerging effort to improve transparency and coherence in the theoretical and conceptual basis for RCTs on effective interventions to reduce health inequity. We endeavour to achieve this aim by pursuing two more specific objectives. First, we propose an overview of three broader health equity frameworks and clarify their implications for the measurement of health inequality in RCTs. Second, we seek to clarify the relationship between theory and translational challenges that researchers would need to attend to, in order to ensure that equity-relevant RCTs are coherently grounded in theory. (shrink)

Ereignet sich anstelle von Klang oder Sprache, Musik oder Lärm lediglich Stille oder vielmehr das, was wir für Stille halten, kommt ein unerwartetes Aufmerken in Gang. Die Stille kann auffordern, genauer hinzuhören, aber auch genauer hinzusehen. Ein plötzliches Aufmerken geschieht jedoch nur, wenn die Stille den Wahrnehmenden unerwartet trifft. Einer im Alltäglichen zumeist durch die Priorität des Bewussten, Bekannten oder Vertrauten untergeordneten Stille, können Arbeiten, wie jene von Aernout Mik, eine konkrete Erfahrbarkeit geben. Was er erfahrbar werden lässt, ist aber (...) nicht die Stille, sondern das, was in der Regel überhört wird. In der Verkehrung des vermeintlich Unhörbaren in ein Hörbares zeigt sich mit der Stille ein Möglichkeitsraum, dessen Besonderheit die Autorin mit der Frage, was sich in der Erfahrung von Stille zeigt, nachgeht. Ist also von einer Stille als ästhetischem Phänomen die Rede, ist nicht eine Stille innerhalb der Rezeption genuin stiller Kunstwerke gemeint, sondern der bewusste Entzug des Auditiven. Damit widerspricht die Autorin zugleich einer Vorstellung von Stille als mess- oder bestimmbarer Grösse und stellt die Stille aus der ästhetischen Erfahrung heraus ins Zentrum ihrer Betrachtungen. (shrink)

Providing heroin to heroin addicts taking part in medical trials to assess the effectiveness of the drug as a treatment alternative, breaches ethical research standards, some ethicists maintain. Heroin addicts, they say, are unable to consent voluntarily to take part in these trials. Other ethicists disagree. In our view, both sides of the debate have an inadequate understanding of voluntariness. In this article we therefore offer a fuller conception, one which allows for a more flexible, case-to-case approach in which some (...) heroin addicts are considered capable of consenting voluntarily, others not. An advantage of this approach, it is argued, is that it provides a safety net to minimize the risk of inflicting harm on trial participants. (shrink)

This paper responds to the commentaries from Stacy Carter and Alan Cribb. We pick up on two main themes in our response. First, we reflect on how the process of setting standards for empirical bioethics research entails drawing boundaries around what research counts as empirical bioethics research, and we discuss whether the standards agreed in the consensus process draw these boundaries correctly. Second, we expand on the discussion in the original paper of the role and significance of the concept of (...) ‘integrating’ empirical methods and ethical argument as a standard for research practice within empirical bioethics. (shrink)

The aim of the study was to compare the acute effects of traditional resistance training and superset training on training duration, training volume and different perceptive measures. Twenty-nine resistance-trained participants performed a whole-body workout traditionally and as supersets of exercises targeting different muscle groups, in a randomized-crossover design. Each session was separated by 4–7 days, and consisted of eight exercises and three sets to failure. Training duration and number of repetitions lifted were recorded during the sessions. Rate of perceived exertion (...) for effort, rate of perceived exertion for discomfort, session displeasure/pleasure, and exercise enjoyment were measured 15 min after each session. Forty-eight hours after the final session participants reported which session they preferred. The superset session led to significantly higher values for RPE and RPD and tended to be higher for sPDF, i.e., more pleasurable, compared to the traditional session. There was no difference in EES. The traditional session led to significantly increased training volume and lasted 23 min longer than the superset session. Eighteen of the participants preferred the superset session, while 11 preferred the traditional session. In conclusion, performing a whole-body workout as a superset session was more time-efficient, but reduced the training volume and was perceived with greater exertion for effort and discomfort than a traditional workout. (shrink)

The objective of this article is to explore people’s attitudes toward responsibility in the allocation of public health care resources. Special attention is paid to conceptualizations of responsibility involving blame and sanctions. A representative sample of the Norwegian population was asked about various responsibility mechanisms that have been proposed in the theoretical literature on health care and personal responsibility, from denial of treatment to a tax on unhealthy consumer goods. Survey experiments were employed to study treatment effects, such as whether (...) fairness considerations affect attitudes about responsibility. We find that, overall, a substantial minority of the respondents find it fair to let the health care system sanction people—in one way or another—for voluntary behaviors that increase the risk of becoming ill. Quite surprisingly, we find that people are more prone to report that they should themselves be held responsible for unhealthy lifestyles than others. (shrink)

BackgroundResearch proactively and deliberately aims to bring about specific changes to how societies function and individual lives fare. However, in the ever-expanding field of ethical regulations and guidance for researchers, one ethical consideration seems to have passed under the radar: How should researchers act when pursuing actual, societal changes based on their academic work?Main textWhen researchers engage in the process of bringing about societal impact to tackle local or global challenges important concerns arise: cultural, social and political values and institutions (...) can be put at risk, transformed or even hampered if researchers lack awareness of how their ‘acting to impact’ influences the social world. With today’s strong focus on research impacts, addressing such ethical challenges has become urgent within in all fields of research involved in finding solutions to the challenges societies are facing. Due to the overall goal of doing something good that is often inherent in ethical approaches, boundaries to researchers’ impact of something good is neither obvious, nor easy to detect. We suggest that it is time for the field of bioethics to explore normative boundaries for researchers’ pursuit of impact and to consider, in detail, the ethical obligations that ought to shape this process, and we provide a four-step framework of fair conditions for such an approach. Our suggested approach within this field can be useful for other fields of research as well.ConclusionWith this paper, we draw attention to how the transition from pursuing impact within the Academy to trying to initiate and achieve impact beyond the Academy ought to be configured, and the ethical challenges inherent in this transition. We suggest a stepwise strategy to identify, discuss and constitute consensus-based boundaries to this academic activity. This strategy calls for efforts from a multi-disciplinary team of researchers, advisors from the humanities and social sciences, as well as discussants from funding institutions, ethical committees, politics and the society in general. Such efforts should be able to offer new and useful assistance to researchers, as well as research funding agencies, in choosing ethically acceptable, impact-pursuing projects. (shrink)