ABSTRACT Background: Biomedical science is producing an avalanche of data about risk factors, often with a small predictive value, associated with a broad diversity of diseases. Prevention and screening are increasingly moving from public health into the clinic. Therefore, the question of which risk factors to investigate and disclose in the individual patient, becomes ethically increasingly urgent. In line with Wilson and Jungner's public health‐related 10 principles for screening, it seems crucial to distinguish important from unimportant health risks. Aim: to (...) explore the ways in which clinicians distinguish important from unimportant health risks. Methods: We interviewed 36 respondents (gastroenterologists and gynaecologists/obstetrics) in 5 focus group interviews and 15 open in‐depth interviews on their interpretation of what makes a health risk important. Results: Physicians primarily interpreted importance as the severity of the possible harm, less often its probability. Possibilities of prevention or reassurance strongly influenced their judgment on importance. Discussion: It is not likely that interpreting ‘important’ as ‘severe’ will help in differentiating meaningful from meaningless risk knowledge. A more fundamental change in our ways of dealing with risk may be called for. We discuss existing literature on resilience as an alternative way to deal with risk. Balancing prevention and risk reduction with resilience could be a fruitful direction. (shrink)

In this article a simpte model of Belgian government coalition formation is proposed. lts main advantages over the traditional game theoretical approach are, first, its dynamic nature and, second, the fact that only one coalition is predicted per 'game '. As a result of the latter characteristic, the integration of this coalition formation submodel in a larger politico-economic model should be far less complicated. Moreover, statistical tests indicate that the proposed model works at least as good as the traditional theories, (...) despite its parsimonious nature. (shrink)

This chapter addresses the relationship between misinformation and disagreement. We begin by arguing that one traditional bogeyman in this domain, ideological polarization, does not account for the many problems that have been documented. Instead, affective polarization seems to be the root cause of most of these problems. We then discuss the relationships between moral outrage, misinformation, and affective polarization. We next turn to the political implications of affective polarization and conclude by discussing some potential solutions to the problems that arise (...) in this area. (shrink)

This chapter addresses the relationship between misinformation and disagreement. We begin by arguing that one traditional bogeyman in this domain, ideological polarization, does not account for the many problems that have been documented. Instead, affective polarization seems to be the root cause of most of these problems. We then discuss the relationships between moral outrage, misinformation, and affective polarization. We next turn to the political implications of affective polarization and conclude by discussing some potential solutions to the problems that arise (...) in this area. (shrink)

By means of a reanalysis of the most relevant data source—the International Social Mobility and Politics File—this article criticizes the newly grown consensus in political sociology that class voting has declined since World War II. An increase in crosscutting cultural voting, rooted in educational differences rather than a decline in class voting, proves responsible for the decline of traditional class-party alignments. Moreover, income differences have not become less but more consequential for voting behavior during this period. It is concluded that (...) the new consensus has been built on quicksand. Class is not dead—it has been buried alive under the increasing weight of cultural voting, systematically misinterpreted as a decline in class voting because of the widespread application of the so-called Alford index. (shrink)

Trust in vaccination is eroding, and attitudes about vaccination have become more polarized. This is an observational study of Twitter analyzing the impact that COVID-19 had on vaccine discourse. We identify the actors, the language they use, how their language changed, and what can explain this change. First, we find that authors cluster into several large, interpretable groups, and that the discourse was greatly affected by American partisan politics. Over the course of our study, both Republicans and Democrats entered the (...) vaccine conversation in large numbers, forming coalitions with Antivaxxers and public health organizations, respectively. After the pandemic was officially declared, the interactions between these groups increased. Second, we show that the moral and non-moral language used by the various communities converged in interesting and informative ways. Finally, vector autoregression analysis indicates that differential responses to public health measures are likely part of what drove this convergence. Taken together, our results suggest that polarization around vaccination discourse in the context of COVID-19 was ultimately driven by a trust-first dynamic of political engagement. (shrink)

The author investigates how the conception of legal validity as a specific mode of existence, adopted by Kelsen in Allgemeine Theorie der Normen (General Theory of Norms), can be reconciled with a conception of the legal system in which conflicts of legal norms remain of logical concern. To this end he makes use of Ludwig Wittgenstein's picture theory of the proposition as set out in the Tractatus Logico-Philosophicus. The conclusion is that in order to reconcile the two conceptions, the legal (...) system itself must be conceived of as consisting of three sub-systems, namely, (i) a sub-system of perceptible legal judgments, (ii) a sub-system of valid legal conditions, and (iii) a sub-system of observable social practices. (shrink)

The article is concerned with the question of how legal institutions are structured with the use of constitutive, institutive, consequential, and terminative rules. To that end, the regulation of international treaties as laid down in the Vienna Convention on the Law of Treaties of 1969 is analysed. This leads to the discovery of two additional categories of rules: content rules and invalidating rules. Finally, the special status of unique legal institutions is investigated. Unique legal institutions – for example, heads of (...) state, parliaments, and supreme courts – enjoy validity in a legal system to the exclusion of the validity of any other legal institution of the same category in that system. (shrink)

This paper discusses some of the anthropological andphilosophical features of the use of self-managementplans by patients with a chronic disease, focusing onpatients with asthma. Characteristics of thistechnologically mediated form of self-care arecontrasted with the work of Mauss and Foucault on bodytechniques and techniques of self. The similaritiesand differences between self-management of asthma andFoucault's technologies of self highlight some of theways in which self-management contributes tomodifications in the definitions of patients andphysicians. Patients, in measuring their lungfunction, first come to rely on (...) measurements more thanon felt disturbances, but next, felt disturbancesbecome modified by previous measurements. Physicians,on the other hand, see their role changed from expertto being a participant in a joint treatment. It isargued that the concept of agency is more appropriatefor describing the advantage of self-management forpatients than autonomy. (shrink)

The author investigates how the conception of legal validity as a specific mode of existence, adopted by Kelsen in Allgemeine Theorie der Normen (General Theory of Norms), can be reconciled with a conception of the legal system in which conflicts of legal norms remain of logical concern. To this end he makes use of Ludwig Wittgenstein's picture theory of the proposition as set out in the Tractatus Logico-Philosophicus. The conclusion is that in order to reconcile the two conceptions, the legal (...) system itself must be conceived of as consisting of three sub-systems, namely, (i) a sub-system of perceptible legal judgments, (ii) a sub-system of valid legal conditions, and (iii) a sub-system of observable social practices. (shrink)

The article is concerned with the question of how legal institutions are structured with the use of constitutive, institutive, consequential, and terminative rules. To that end, the regulation of international treaties as laid down in the Vienna Convention on the Law of Treaties of 1969 is analysed. This leads to the discovery of two additional categories of rules: content rules and invalidating rules. Finally, the special status of unique legal institutions is investigated. Unique legal institutions – for example, heads of (...) state, parliaments, and supreme courts – enjoy validity in a legal system to the exclusion of the validity of any other legal institution of the same category in that system. (shrink)

Nowadays, neo-institutionalistic approaches are prominent in economics, political science, the science of public administration and sociology. There is a general complaint about the vagueness of the concept of institutions and the apparent disparity of phenomena falling under it. This article shows how institutional legal theory provides a typology of institutions as sets of rules and corresponding patterns of regulated behaviour that can help to avert much confusion. The typologys usefulness is tested by applying it to an array of private governance (...) structures distinguished by transaction cost economics. (shrink)

BackgroundConsent for data research in acute and critical care is complex as patients become at least temporarily incapacitated or die. Existing guidelines and regulations in the European Union are of limited help and there is a lack of literature about the use of data from this vulnerable group. To aid the creation of a patient-centred framework for responsible data research in the acute setting, we explored views of patients and next-of-kin about the collection, storage, sharing and use of genetic and (...) health-related data for observational research.MethodsWe conducted qualitative interviews (n = 19) with Dutch sudden cardiac arrest survivors who donated clinical and socio-economic data and genetic samples to research. We also interviewed their next-of-kin. Topics were informed by ethics literature and we used scenario-sketches to aid discussion of complex issues.ResultsSudden cardiac arrest survivors displayed limited awareness of their involvement in health data research and of the content of their given consent. We found that preferences regarding disclosure of clinically actionable genetic findings could change over time. When data collection and use were limited to the medical realm, patients trusted researchers to handle data responsibly without concern for privacy or other risks. There was no consensus as to whether deferred consent should be explicitly asked from survivors. If consent is asked, this would ideally be done a few months after the event when cognitive capacities have been regained. Views were divided about the need to obtain proxy consent for research with deceased patients’ data. However, there was general support for the disclosure of potentially relevant post-mortem genetic findings to relatives.ConclusionsSudden cardiac arrest patients’ donation of data for research was grounded in trust in medicine overall, blurring the boundary between research and care. Our findings also highlight questions about the acceptability of a one-time consent and about responsibilities of patients, researchers and ethics committees. Finally, further normative investigation is needed regarding the (continued) use of participants’ data after death, which is of particular importance in this setting. Our findings are thought to be of relevance for other acute and life-threatening illnesses as well. (shrink)

This paper articulates dignity as relational engagement in concrete care situations. Dignity is often understood as an abstract principle that represents inherent worth of all human beings. In actual care practices, this principle has to be substantiated in order to gain meaning and inform care activities. We describe three exemplary substantiations of the principle of dignity in care: as a state or characteristic of a situation; as a way to differentiate between socio-cultural positions; or as personal meaning. We continue our (...) analysis by presenting cases on dignity in care related to us in focus groups with medical professionals. Our empirical ethical lens is in this paper is to analyse, not the meaning of dignity, but the way in which it emerges in practices where it is pursued, within relationships between people, technologies, places, regulations, and the values cherished by or embedded in them. We show that professional caregivers recognize in the dignity of the person they care for their own dignity; giving up on the one implies no less than giving up on the other. This ‘mirrored experience’ of dignity expresses itself in professional’s engagement with the situation. The value of this engagement, we argue, lies not primarily in realizing the particular content of the values at stake. We point to the importance of engagement itself, even if the values engaged with cannot be realized to the full, and even if competing versions of dignity are at stake simultaneously. In this way the caregivers provide us with interesting examples of moral actorship in situations of conflicting values. (shrink)

We argue that the prudential benefits of long-distance leisure travel can justify such trips even though there are strong and important reasons against long-distance flying. This is because prudential benefits can render otherwise impermissible actions permissible, and because, according to dominant theories about wellbeing, long-distance leisure travel provides significant prudential benefits. However, this ‘wellbeing argument’ for long-distance leisure travel must be qualified in two ways. First, because travellers are epistemically privileged with respect to knowledge about what is good for them, (...) they must look critically at their own assessment of the prudential benefits of a trip. Second, the wellbeing argument is unlikely to support prudential arguments for long-distance leisure trips made by frequent flyers. (shrink)

One of the most significant changes in modern healthcare delivery has been the evolution of the paper record to the electronic health record (EHR). In this paper we argue that the primary change has been a shift in the focus of documentation from monitoring individual patient progress to recording data pertinent to Institutional Priorities (IPs). The specific IPs to which we refer include: finance/reimbursement; risk management/legal considerations; quality improvement/safety initiatives; meeting regulatory and accreditation standards; and patient care delivery/evidence based practice. (...) Following a brief history of the transition from the paper record to the EHR, the authors discuss unintended or contested consequences resulting from this change. These changes primarily reflect changes in the organization and amount of clinician work and clinician‐patient relationships. The paper is not a research report but was informed by an institutional ethnography the aim of which was to understand how the EHR impacted clinicians and administrators in a large, urban hospital in the United States. The paper was also informed by other sources, including the philosophies of Jacques Ellul, Don Idhe, and Langdon Winner. (shrink)

The ethics of hope has often been understood as a conflict between duties: do not lie versus do not destroy hope. However, such a way of framing the ethics of hope may easily place healthcare professionals at the side of realism and patients at the side of hope. That leaves unexamined relational dimensions of hope. The objective of this study was to describe a relational ethics of hope based on the perspectives of palliative care patients, their family members and their (...) healthcare professionals. A qualitative longitudinal method based on narrative theories was used. Semi-structured interviews on hope were conducted with twenty-nine palliative care patients, nineteen friends or family members, and fifty-two healthcare professionals, which were recorded and transcribed. Data on hope were thematically analyzed. The researchers wrote memos and did member checking with participants. When participants spoke about hope, they referred to power and empowerment, like the powerful bonding of hope between patients and physicians. They also associated hope with the loss of hope and suffering. Several participating healthcare professionals tried to balance both sides, which involved acknowledgment of hope and suffering. Hope and power were reflected in the ethical concept of empowerment, whereas suffering and the loss of hope were reflected in the ethical concept of compassion. Empowerment and compassion can be balanced in solicitude. In conclusion, a relational ethics of hope requires solicitude, in which healthcare professionals are able to weigh empowerment and compassion within particular relationships. (shrink)

Human communication is often thought about in terms of transmitted messages in a conventional code like a language. But communication requires a specialized interactive intelligence. Senders have to be able to perform recipient design, while receivers need to be able to do intention recognition, knowing that recipient design has taken place. To study this interactive intelligence in the lab, we developed a new task that taps directly into the underlying abilities to communicate in the absence of a conventional code. We (...) show that subjects are remarkably successful communicators under these conditions, especially when senders get feedback from receivers. Signaling is accomplished by the manner in which an instrumental action is performed, such that instrumentally dysfunctional components of an action are used to convey communicative intentions. The findings have important implications for the nature of the human communicative infrastructure, and the task opens up a line of experimentation on human communication. (shrink)

Human communication is often thought about in terms of transmitted messages in a conventional code like a language. But communication requires a specialized interactive intelligence. Senders have to be able to perform recipient design, while receivers need to be able to do intention recognition, knowing that recipient design has taken place. To study this interactive intelligence in the lab, we developed a new task that taps directly into the underlying abilities to communicate in the absence of a conventional code. We (...) show that subjects are remarkably successful communicators under these conditions, especially when senders get feedback from receivers. Signaling is accomplished by the manner in which an instrumental action is performed, such that instrumentally dysfunctional components of an action are used to convey communicative intentions. The findings have important implications for the nature of the human communicative infrastructure, and the task opens up a line of experimentation on human communication. (shrink)

Physicians are increasingly confronted with the consequences of allocation policies. In several countries, physicians have been assigned a gatekeeper role for secondary health care. Many ethicists oppose this assignment for several reasons, concentrating on the harm the intrusion of societal arguments would inflict on doctor-patient relations. It is argued that these arguments rest on a distinction of spheres of values and of rationality, without taking into account the mixing of values and rationalities that takes place in everyday medical practice. If (...) medical practice, then, does not follow a single, pure rationality, can it also incorporate the societal rationality of the gatekeeper role?Using a case from general practice, I try to show how physicians may integrate societal arguments into their practice in a morally acceptable way. A version of the model of reflective equilibrium and especially Beauchamp and Childress's safeguards, may be helpful both to analyse and teach such balancing of values and rationalities. (shrink)

Grammatical Evolution (GE) has a long history in evolutionary computation. Central to the behaviour of GE is the use of a linear representation and grammar to map individuals from search spaces into problem spaces. This genotype to phenotype mapping is often argued as a distinguishing property of GE relative to other techniques, such as context-free grammar genetic programming (CFG-GP). Since its initial description, GE research has attempted to incorporate information from the grammar into crossover, mutation, and individual initialisation, blurring the (...) distinction between genotype and phenotype and creating GE variants closer to CFG-GP. This is argued to provide GE with the "best of both worlds", allowing degrees of grammatical bias to be introduced into operators to best suit the given problem. This paper examines the behaviour of three grammar-based search methods on several problems from previous GE research. It is shown that, unlike CFG-GP, the performance of "pure" GE on the examined problems closely resembles that of random search. The results suggest that further work is required to determine the cases where the "best of both worlds" of GE are required over a straight CFG-GP approach. (shrink)

In this article, we use the theory of Information Ethics to argue that deceased people have a prima facie moral right to privacy in the context of health data research, and that this should be reflected in regulation and guidelines. After death, people are no longer biological subjects but continue to exist as informational entities which can still be harmed/damaged. We find that while the instrumental value of recognising post-mortem privacy lies in the preservation of the social contract for health (...) research, its intrinsic value is grounded in respect for the dignity of the post-mortem informational entity. However, existing guidance on post-mortem data protection is available only in the context of genetic studies. In comparing the characteristics of genetic data and other health-related data, we identify two features of DNA often given as arguments for this genetic exceptionalism: relationality and embodiment. We use these concepts to show that at the appropriate Level of Abstraction, there is no morally relevant distinction between posthumous genetic and other health data. Thus, genetic data should not automatically receive special moral status after death. Instead we make a plea for ‘contextual exceptionalism’. Our analysis concludes by reflecting on a real-world case and providing suggestions for contextual factors that researchers and oversight bodies should take into account when designing and evaluating research projects with health data from deceased subjects. (shrink)

Background: Biomedical science is producing an avalanche of data about risk factors, often with a small predictive value, associated with a broad diversity of diseases. Prevention and screening are increasingly moving from public health into the clinic. Therefore, the question of which risk factors to investigate and disclose in the individual patient, becomes ethically increasingly urgent. In line with Wilson and Jungner's public health-related 10 principles for screening, it seems crucial to distinguish important from unimportant health risks.Aim: to explore the (...) ways in which clinicians distinguish important from unimportant health risks.Methods: We interviewed 36 respondents (gastroenterologists and gynaecologists/obstetrics) in 5 focus group interviews and 15 open in-depth interviews on their interpretation of what makes a health risk important.Results: Physicians primarily interpreted importance as the severity of the possible harm, less often its probability. Possibilities of prevention or reassurance strongly influenced their judgment on importance.Discussion: It is not likely that interpreting ‘important’ as ‘severe’ will help in differentiating meaningful from meaningless risk knowledge. A more fundamental change in our ways of dealing with risk may be called for. We discuss existing literature on resilience as an alternative way to deal with risk. Balancing prevention and risk reduction with resilience could be a fruitful direction. (shrink)

Patient-reported outcomes are frequently used for medical decision making, at the levels of both individual patient care and healthcare policy. Evidence increasingly shows that PROs may be influenced by patients’ response shifts and dispositions. We identify how response shifts and dispositions may influence medical decisions on both the levels of individual patient care and health policy. We provide examples of these influences and analyse the consequences from the perspectives of ethical principles and theories of just distribution. If influences of response (...) shift and disposition on PROs and consequently medical decision making are not considered, patients may not receive optimal treatment and health insurance packages may include treatments that are not the most effective or cost-effective. We call on healthcare practitioners, researchers, policy makers, health insurers, and other stakeholders to critically reflect on why and how such patient reports are used. (shrink)

In reference to the different approaches in philosophy(of medicine) of the nature of (medical) technology,this article introduces the topic of this specialissue of Theoretical Medicine and Bioethics, that is,the way the different forms of medical technologyfunction in everyday medical practice. The authorselaborate on the active role technology plays inshaping our views on disease, illness, and the body,whence in shaping our world.

BackgroundThe emergence of artificial intelligence (AI) in medicine has prompted the development of numerous ethical guidelines, while the involvement of patients in the creation of these documents lags behind. As part of the European PROFID project we explore patient perspectives on the ethical implications of AI in care for patients at increased risk of sudden cardiac death (SCD).AimExplore perspectives of patients on the ethical use of AI, particularly in clinical decision-making regarding the implantation of an implantable cardioverter-defibrillator (ICD).MethodsSemi-structured, future scenario-based (...) interviews were conducted among patients who had either an ICD and/or a heart condition with increased risk of SCD in Germany (n = 9) and the Netherlands (n = 15). We used the principles of the European Commission’s Ethics Guidelines for Trustworthy AI to structure the interviews.ResultsSix themes arose from the interviews: the ability of AI to rectify human doctors’ limitations; the objectivity of data; whether AI can serve as second opinion; AI explainability and patient trust; the importance of the ‘human touch’; and the personalization of care. Overall, our results reveal a strong desire among patients for more personalized and patient-centered care in the context of ICD implantation. Participants in our study express significant concerns about the further loss of the ‘human touch’ in healthcare when AI is introduced in clinical settings. They believe that this aspect of care is currently inadequately recognized in clinical practice. Participants attribute to doctors the responsibility of evaluating AI recommendations for clinical relevance and aligning them with patients’ individual contexts and values, in consultation with the patient.ConclusionThe ‘human touch’ patients exclusively ascribe to human medical practitioners extends beyond sympathy and kindness, and has clinical relevance in medical decision-making. Because this cannot be replaced by AI, we suggest that normative research into the ‘right to a human doctor’ is needed. Furthermore, policies on patient-centered AI integration in clinical practice should encompass the ethics of everyday practice rather than only principle-based ethics. We suggest that an empirical ethics approach grounded in ethnographic research is exceptionally well-suited to pave the way forward. (shrink)

Organizational purpose has flourished in the professional management literature, yet despite increased scholarly interest, academic knowledge and empirical research on the topic remain scarce. Moreover, studies that have been conducted contain important oversights including the lack of a clear conceptualization and misinterpretations that hinder the further development and understanding of organizational purpose. In view of these shortcomings, our interview study aimed to contribute to academic and societal conversations on the contemporary meaning and function of organizational purpose considering the voices and (...) perspectives of 44 global experts. Employing template analysis, we defined organizational purpose as “an organization’s reason for being characterized by significance, aspiration, direction, unification, and motivation.” Moreover, we proposed an explanatory conceptual model, including drivers and outcomes of purpose, important boundary conditions, and explanatory mechanisms. Drawing on self-determination theory, person–organization fit theory, job characteristics theory, and conservation of resources theory, we were able to explain how and under what conditions these concepts are related to organizational purpose. In doing so, our research contributes to advancing the knowledge and understanding of organizational purpose and its effects on human lives within and outside organizations. Our study thereby enhances the understanding of the role of organizations in society and helps in evaluating whether organizations take responsibility by living their purpose in the society they are part of. As such, our study provides important insights for theory development, scale development, and further empirical research on organizational purpose and its effects in different streams such as OB, HRM, marketing, leadership, and strategy. (shrink)

Any complete theory of speaking must take the dialogical function of language use into account. Pickering & Garrod (P&G) make some progress on this point. However, we question whether their interactive alignment model is the optimal approach. In this commentary, we specifically criticize (1) their notion of alignment being implemented through priming, and (2) their claim that self-monitoring can occur at all levels of linguistic representation.

Background Since the enactment of the euthanasia law in the Netherlands, there has been a lively public debate on assisted dying that may influence the way patients talk about euthanasia and physician-assisted suicide with their physicians and the way physicians experience the practice of EAS. Aim To show what developments physicians see in practice and how they perceive the influence of the public debate on the practice of EAS. Methods We conducted a secondary analysis of in-depth interviews with 28 Dutch (...) physicians who had experience with a complex case of EAS. Respondents were recruited both by the network of physicians working for SCEN as well as via a national questionnaire, wherein participating physicians could indicate their willingness to be interviewed. Results Three themes came up in analysing the interviews. First, the interviewed physicians experienced a change in what patients would expect from them: from a role as an involved caregiver to being the mere performer of EAS. Second, interviewees said that requests for EAS based on non-medical reasons came up more frequently and wondered if EAS was the right solution for these requests. Last, respondents had the impression that the standards of EAS are shifting and that the boundaries of the EAS regulation were stretched. Conclusions The perceived developments could make physicians less willing to consider a request for EAS. Our results also raise questions about the role of physicians and of EAS in society. (shrink)

The problem of simultaneous measurement of incompatible observables in quantum mechanics is studied on the one hand from the viewpoint of an axiomatic treatment of quantum mechanics and on the other hand starting from a theory of measurement. It is argued that it is precisely such a theory of measurement that should provide a meaning to the axiomatically introduced concepts, especially to the concept of observable. Defining an observable as a class of measurement procedures yielding a certain prescribed result for (...) the probability distribution of the set of values of some quantity (to be described by the set of eigenvalues of some Hermitian operator), this notion is extended to joint probability distributions of incompatible observables. It is shown that such an extension is possible on the basis of a theory of measurement, under the proviso that in simultaneously measuring such observables there is a disturbance of the measurement results of the one observable, caused by the presence of the measuring instrument of the other observable. This has as a consequence that the joint probability distribution cannot obey the marginal distribution laws usually imposed. This result is of great importance in exposing quantum mechanics as an axiomatized theory, since overlooking it seems to prohibit an axiomatic description of simultaneous measurement of incompatible observables by quantum mechanics. (shrink)

Studies associating interactions of 5-HTTLPR and life adversities with depression have yielded equivocal results. Studying endophenotypes may constitute a more powerful approach. In the current study, it was assessed whether interactions of 5-HTTLPR with childhood emotional abuse (CEA) and recent negative life events (RNLE) affect possible cognitive endophenotypes of depression, namely, attention-allocation bias and the ability to recognise others' mind states in 215 young adults of North-West European descent. The ability to classify others' negative mind states was found to be (...) increased with increasing RNLE in carriers of low-expressing Serotonin Transporter Linked Polymorphic Region (5-HTTLPR) alleles. Carriers of two low-expressing alleles also preferentially oriented attention towards negative information. Gene-environment interactions were not observed for attention allocation bias. No effects involving CEA were observed. These results suggest that low-expressing 5-HTTLPR alleles may confer increased risk for depression through enhanced recognition of negative facial expressions following RNLE. (shrink)

Persons with profound intellectual and multiple disabilities cannot speak about their Quality of Life, which makes it necessary to involve others. In current approaches, these ‘others’ are seen as assessors trying to describe QoL as objectively as possible, which involves a reduction of their experiences, through which they develop knowledge on the QoL of the person with PIMD. The objective of this paper is to give caregivers’ knowledge on the QoL of a person with PIMD a theoretical basis that values (...) these experiences. We will argue that caregivers should be seen as witnesses, not assessors, and their statements on QoL as testimonies, not assessments. Audiences judge the trustworthiness of these witnesses intersubjectively, which implies a relationship characterized by trust and suspicion. Trust supports the witness to tell in her own words about the QoL of the person with PIMD; it demands receptivity, indicating that both the witness and the audience are willing to reconsider their perspective on QoL. Suspicion is necessary too, which helps the witness to critically approach her own interpretations and supports her to create more trustworthy testimonies. We conclude that the concept of witnessing helps to acknowledge caregivers’ experiential knowledge of QoL of a person with PIMD, which may also apply to other persons who cannot speak about their own QoL. We hope that our study will empower caregivers to give testimonies on QoL of a person with PIMD, which is crucial when complex decisions about the life of this person have to be made. (shrink)

At the height of the COVID-19 crisis in the Netherlands a shortness of intensive care beds was looming. Dutch professional medical organizations asked a group of ethicists for assistance in drafting guidelines and criteria for selection of patients for intensive care treatment in case of absolute scarcity, when medical selection criteria would no longer suffice. This article describes the Dutch context, the process of drafting the advice and reflects on the role of ethicists and lessons learned. We argue that timely (...) interaction between clinical and ethical expertise is necessary since the distinction between medical and non-medical considerations is not as clearcut as sometimes assumed. Furthermore, pragmatic considerations related to the specifics of an epidemic are of importance, for example, in relation to prioritizing health care workers. As a consequence, any protocol already present before the pandemic would need alterations to fit the current situation. The ‘fair innings’ criterion we proposed, rephrased as an argument of intergenerational solidarity, was considered reasonable by professionals as well as patient organizations. While it is desirable to draft ethical guidelines in ‘peacetime’ as a matter of pandemic preparedness, the pressure of an actual crisis facilitates decision-making, although it will also complicate a more democratic approach. (shrink)

Developments in medical big data analytics may bring societal benefits but are also challenging privacy and other ethical values. At the same time, an overly restrictive data protection regime can form a serious threat to valuable observational studies. Discussions about whether data privacy or data solidarity should be the foundational value of research policies, have remained unresolved. We add to this debate with an empirically informed ethical analysis. First, experiences with the implementation of the General Data Protection Regulation (GDPR) within (...) a European research consortium demonstrate a gap between the aims of the regulation and its effects in practice. Namely, strictly formalised data protection requirements may cause routinisation among researchers instead of substantive ethical reflection, and may crowd out trust between actors in the health data research ecosystem; while harmonisation across Europe and data sharing between countries is hampered by different interpretations of the law, which partly stem from different views about ethical values. Then, building on these observations, we use theory to argue that the concept of trust provides an escape from the privacy-solidarity debate. Lastly, the paper details three aspects of trust that can help to create a responsible research environment and to mitigate the encountered challenges: trust as multi-agent concept; trust as a rational and democratic value; and trust as method for priority setting. Mutual cooperation in research—among researchers and with data subjects—is grounded in trust, which should be more explicitly recognised in the governance of health data research. (shrink)

This article comments on the article of Thorn and Schurz in this volume and focuses on, what we call, the problem of parasitic experts. We discuss that both meta- induction and crowd wisdom can be understood as pertaining to absolute reliability rather than comparative optimality, and we suggest that the involvement of reliability will provide a handle on this problem.