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Abstract: Abstract This paper is the English translation and adaptation of my inaugural lecture in Amsterdam for the Chair Anthropology of Everyday Ethics in Health Care. I argue that the challenges in health care may look daunting and unsolvable in their scale and complexity, but that it helps to consider these problems in their specificity, while accepting that some problems may not be solved but have become chronic. The paper provides reflections on how to develop a scientific approach that does not aim to eradicate bad things but explores ways in which to live with them. Crucial in this quest is the attention to how we conceptualize problems, and whether this is specific enough for addressing present day concerns. I propose an anthropology of everyday ethics as a way to study people’s everyday ways of handling a variety of goods in practice. I draw specific attention to exploring aesthetic values in everyday life amongst these, values that are used abundantly to qualify events in everyday life but rarely theorized in philosophy or social science. PubDate: 2024-09-01
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Abstract: Abstract Research on human-animal chimeras have elicited alarms and prompted debates. Those involving the generation of chimeric brains, in which human brain cells become anatomically and functionally intertwined with their animal counterparts in varying ratios, either via xenografts or embryonic co-development, have been considered the most problematic. The moral issues stem from a potential for “humanization” of the animal brain, as well as speculative changes to the host animals’ consciousness or sentience, with consequential alteration in the animal hosts’ moral status. However, critical background knowledge appears to be missing to resolve these debates. Firstly, there is no consensus on animal sentience vis-à-vis that of humans, and no established methodology that would allow a wholesome and objective assessment of changes in animal sentience resulting from the introduction of human brain cells. Knowledge in interspecies comparative neuropsychology that could allow effective demarcation of a state of “humanization” is also lacking. Secondly, moral status as a philosophical construct has no scientific and objective points of reference. Either changes in sentience or humanization effects would remain unclear unless there are some neuroscientific research grounding. For a bioethical stance based on moral status of human-animal brain chimera to make meaningful contributions to regulatory policies, it might first need to be adequately informed by, and with its arguments constructed, in a manner that are factually in line with the science. In may be prudent for approved research projects involving the generation of human-animal brain chimera to have a mandatory component of assessing plausible changes in sentience. PubDate: 2024-09-01
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Abstract: Abstract Staging and stratification are two diagnostic approaches that have introduced a more dynamic outlook on the development of diseases, thus participating in blurring the line between the normal and the pathological. First, diagnostic staging, aiming to capture how diseases evolve in time and/or space through identifiable and gradually more severe stages, may be said to lean on an underlying assumption of “temporal determinism”. Stratification, on the other hand, allows for the identification of various prognostic or predictive subgroups based on specific markers, relying on a more “mechanistic” or “statistical” form of determinism. There are two medical fields in which these developments have played a significant role and have given rise to sometimes profound nosological transformations: oncology and psychiatry. Drawing on examples from these two fields, this paper aims to provide much needed conceptual clarifications on both staging and stratification in order to outline how several epistemological and ethical issues may, in turn, arise. We argue that diagnostic staging ought to be detached from the assumption of temporal determinism, though it should still play an essential role in adapting interventions to stage. In doing so, it would help counterbalance stratification’s own epistemological and ethical shortcomings. In this sense, the reflections and propositions developed in psychiatry can offer invaluable insights regarding how adopting a more transdiagnostic and cross-cutting perspective on temporality and disease dynamics may help combine both staging and stratification in clinical practice. PubDate: 2024-09-01
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Abstract: Abstract Chronic pain is a common disorder with enormous sociomedical importance. A major part of primary and secondary costs of illness is caused by the various pain syndromes. Nociception – the sensory perception of a painful stimulus – is a complex process relying on an intricate system of anatomical, neurophysiological and biochemical networks. This applies even more so to pain – the state of experiencing a nociceptive event, of interpreting it in terms of meaning for the affected individual and of suffering a range of emotions it elicits. This intricacy renders it obvious, that the empirical medical sciences alone cannot explain all aspects of pain. Hence, it has also become a focus of phenomenological research. One aspect of these investigations is the interaction of pain and the perception of the lived body’s spatiality. The focus of this article will build on these concepts to develop a construct of the alteration of temporality caused by chronic pain and the effects this spells out for the affected subject. To this end, I will primarily draw on Merleau-Ponty’s ideas of the lived body as well as on theories of enactivism and embodiment. I will also point out parallels to neuroscientific data, thereby demonstrating the proximity of phenomenology and neuroscience. A possible partial solution to the pain dilemma may be derived from psychology: techniques relying on cognitive behavioural intervention, awareness training, and existential analysis may provide alleviation to patients suffering from chronic pain. PubDate: 2024-09-01
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Abstract: Abstract Almost all countries and fertility clinics impose age limits on women who want to become pregnant through Assisted Reproductive Technologies (ART). Age limits for aspiring fathers, however, are much less common and remain a topic of debate. This article departs from the principle of reproductive autonomy and a conditional positive right to receive ART, and asks whether there are convincing arguments to also impose age limits on aspiring fathers. After considering three consequentialist approaches to justifying age limits for aspiring fathers, we take in a concrete normative stance by concluding that those are not strong enough to justify such cut-offs. We reinforce our position by drawing a comparison between the case of a 39-year-old woman who wants to become a single mother via a sperm donor on the one hand, and on the other hand the same woman who wants to have a child with a 64-year-old man who she loves and who is willing to care for the child as long as he is able to. We conclude that, as long as appropriate precautions are taken to protect the welfare of the future child, couples who want to receive fertility treatment should never be limited on the basis of the age of the (male) partner. An absence of age limits for men would respect the reproductive autonomy of both the man and the woman. PubDate: 2024-09-01
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Abstract: Abstract Priority-setting policy-makers often face moral and political pressure to balance the conflicting motivations of efficiency and rescue/non-abandonment. Using the conflict between these motivations as a case study can enrich the understanding of institutional design in developed democracies. This essay presents a cognitive-psychological account of the conflict between efficiency and rescue/non-abandonment in health care priority-setting. It then describes three sets of institutional arrangements—in Australia, England/Wales, and Germany, respectively—that contend with this conflict in interestingly different ways. The analysis yields at least three implications for institutional design in developed democracies: (1) indeterminacy at the level of moral psychology can increase the probability of indeterminacy at the level of institutional design; (2) situational constraints in effect require priority-setting policy-makers to adopt normative-moral pluralism; and (3) the U.S. health care system may be in an anti-priority-setting equilibrium. PubDate: 2024-09-01
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Abstract: Abstract The study of rare diseases has long been an area of challenge for medical researchers, with agonizingly slow movement towards improved understanding of pathophysiology and treatments compared with more common illnesses. The push towards evidence-based medicine (EBM), which prioritizes certain types of evidence over others, poses a particular issue when mapped onto rare diseases, which may not be feasibly investigated using the methodologies endorsed by EBM, due to a number of constraints. While other trial designs have been suggested to overcome these limitations (with varying success), perhaps the most recent and enthusiastically adopted is the application of artificial intelligence to rare disease data. This paper critically examines the pitfalls of EBM (and its trial design offshoots) as it pertains to rare diseases, exploring the current landscape of AI as a potential solution to these challenges. This discussion is also taken a step further, providing philosophical commentary on the weaknesses and dangers of AI algorithms applied to rare disease research. While not proposing a singular solution, this article does provide a thoughtful reminder that no ‘one-size-fits-all’ approach exists in the complex world of rare diseases. We must balance cautious optimism with critical evaluation of new research paradigms and technology, while at the same time not neglecting the ever-important aspect of patient values and preferences, which may be challenging to incorporate into computer-driven models. PubDate: 2024-09-01
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Abstract: Abstract Bioethics has developed approaches to address ethical issues in health care, similar to how technology ethics provides guidelines for ethical research on artificial intelligence, big data, and robotic applications. As these digital technologies are increasingly used in medicine, health care and public health, thus, it is plausible that the approaches of technology ethics have influenced bioethical research. Similar to the “empirical turn” in bioethics, which led to intense debates about appropriate moral theories, ethical frameworks and meta-ethics due to the increased use of empirical methodologies from social sciences, the proliferation of health-related subtypes of technology ethics might have a comparable impact on current bioethical research. This systematic journal review analyses the reporting of ethical frameworks and non-empirical methods in argument-based research articles on digital technologies in medicine, health care and public health that have been published in high-impact bioethics journals. We focus on articles reporting non-empirical research in original contributions. Our aim is to describe currently used methods for the ethical analysis of ethical issues regarding the application of digital technologies in medicine, health care and public health. We confine our analysis to non-empirical methods because empirical methods have been well-researched elsewhere. Finally, we discuss our findings against the background of established methods for health technology assessment, the lack of a typology for non-empirical methods as well as conceptual and methodical change in bioethics. Our descriptive results may serve as a starting point for reflecting on whether current ethical frameworks and non-empirical methods are appropriate to research ethical issues deriving from the application of digital technologies in medicine, health care and public health. PubDate: 2024-08-09
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Abstract: Abstract The paper aims to understand the various legacies of eugenics in the postwar period to recognize both the continuities and discontinuities of eugenics with an approach which is both conceptually sound and historically correct. Building on earlier work of Lene Koch, the paper endeavours to chart the historical trajectory of eugenics by examining how its definition and those of its related or oppositional concepts have evolved within selected lexicon entries across various stages of the century. The inclusion and publication of a concept within a lexicon indicate its significance, linguistic vitality, and prevalence in public discourse. These entries serve as a window into the contemporary understanding and application of concepts over an entire century, offering insights into the practices of eugenics as interpreted by the authoritative scholars of the era. Additionally, these lexicon entries offer more than just a mirror to the past’s prevailing attitudes. The very act of articulating a concept may be viewed as a pivotal element in social struggles, influencing the course of eugenic practices and their interpretations. Both conceptual history and discourse analysis share common ground in their perception of concepts, considering the use of language as a social activity endowed with performative capabilities. They recognize that language does not merely reflect reality but can actively shape it, playing a significant role in societal dynamics and power relations. The Hungarian lexicon entries on eugenics reveal notable disparities in the identified content, the periodization, and the evolution of changes when compared to Lene Koch’s earlier study on Scandinavian eugenics. In Hungary, the concept of eugenics underwent significant changes over four successive periods. The history and interpretation of eugenics can vary significantly from one country to another. Different nations have had their unique experiences and trajectories with the eugenics movement, which have been shaped by their specific cultural, political, and social contexts. These variations emphasize the importance of considering the localized and historical perspectives when examining the concept of eugenics. PubDate: 2024-07-16
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Abstract: Abstract In this paper, I leverage the pragmatist tradition in philosophy, the collective wisdom of scholarship in clinical ethics consultation, and earlier attempts to apply pragmatism in clinical ethics to develop a new vision of clinical ethics practice called New Clinical Pragmatism. It argues that clinical ethics methodology, from the New Clinical Pragmatist’s perspective, amounts to the recommendation that consultants should customize a methodological approach, drawing on the various available methods, depending on the demands of the specific case, and should avoid attempts to identify a ‘true’ methodology but to the incoherence and inevitable failure of those attempts. I argue that pragmatism’s emphasis on practical wisdom and experimentation allow the New Clinical Pragmatist to do this while avoiding irrationality in choosing methods. I discuss how the New Clinical Pragmatist gives a unique, constructive perspective on key aspects of clinical ethics consultation such as the choice of common morality vs. internal morality of medicine approaches, process standards, bioethics mediation, and narrative ethics, and suggest how New Clinical Pragmatism’s relaxed approach to choice of methodology encourages consultants to balance attention to the particulars of the case with knowledge of what the many insightful scholars of clinical ethics methodology have found useful in the past. I also argue that New Clinical Pragmatism is consistent with efforts to professionalize clinical ethics consultation. PubDate: 2024-07-15
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Abstract: Abstract One prominent line of support for nudging in screening programs is the claim that nudging can help ‘bad choosers’ — that is, it can help some patients make choices more in line with their own values and preferences. In this article, I argue that due to the presence of epistemic risk in many screening programs, the argument that nudging can help ‘bad choosers’ should be revised or rejected. Expanding on the work of Biddle, J. B. 2020. Epistemic risks in cancer screening: Implications for ethics and policy. Studies in History and Philosophy of Science Part C: Studies in History and Philosophy of Biological and Biomedical Sciences 79: 101200.), I argue that epistemic risk undermines the argument that nudging can help to promote patient autonomy in the context of screening. Specifically, I argue that epistemic risk results in the inclusion of non-patient values and preferences in the screening process, which challenges the claim that nudging can help patients make choices more in line with their own values and preferences. I present four reasons to think epistemic risk undermines the argument in this way: (1) conflicting values; (2) lack of transparency; (3) limited autonomy in opting out; (4) unjustified manipulation. The presence of epistemic risk in screening programs means that nudging may not always be an effective means of promoting patient autonomy and informed consent. As such, epistemic risk poses significant challenges to at least one ethical justification of nudging in screening programs, and raises further questions about the role of nudging in promoting patient decision-making. PubDate: 2024-07-08
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Abstract: Abstract Disability studies have been successfully focusing on individuals' lived experiences, the personalization of goals, and the constitution of the individual in defining disease and restructuring public understandings of disability. Although they had a strong influence in the policy making and medical modeling of disease, their framework has not been translated to traditional naturalistic accounts of disease. I will argue that, using new developments in evolutionary biology (Extended Evolutionary Synthesis [EES] about questions of proper function) and behavioral ecology (Niche conformance and construction about the questions of reference classes in biostatistics accounts), the main elements of the framework of disability studies can be used to represent life histories at the conceptual level of the two main “non-normative” accounts of disease. I chose these accounts since they are related to medicine in a more descriptive way. The success of the practical aspects of disability studies this way will be communicated without causing injustice to the individual since they will represent the individuality of the patient in two main naturalistic accounts of disease: the biostatistical account and the evolutionary functional account. Although most accounts criticizing the concept of disease as value-laden do not supply a positive element, disability studies can supply a good point for descriptive extension of the concept through inclusion of epistemic agency. PubDate: 2024-07-03
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Abstract: Abstract Genomic data is generated, processed and analysed at an increasingly rapid pace. This data is not limited to the medical context, but plays an important role in other contexts in society, such as commercial DNA testing, the forensic setting, archaeological research, and genetic surveillance. Genomic information also crosses the borders of these domains, e.g. forensic use of medical genetic information, insurance use of medical genomic information, or research use of commercial genomic data. This paper (1) argues that an informed consent approach for genomic information has limitations in many societal contexts, and (2) seeks to broaden the bioethical debate on genomic information by suggesting an approach that is applicable across multiple societal contexts. I argue that the contextual integrity framework, a theory rooted in information technology and big data ethics, is an effective tool to explore ethical challenges that arise from genomic information within a variety of different contexts. Rather than focusing on individual control over information, the contextual integrity approach holds that information should be shared and protected according to the norms that govern certain distinct social contexts. Several advantages of this contextual integrity approach will be discussed. The paper concludes that the contextual integrity framework helps to articulate and address a broad spectrum of ethical, social, and political factors in a variety of different societal contexts, while giving consideration to the interests of individuals, groups, and society at large. PubDate: 2024-06-12 DOI: 10.1007/s11019-024-10211-0
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Abstract: Abstract This contribution addresses some bioethical and medico-legal issues of the opinion formulated by the Italian National Bioethics Committee (CNB) in response to the dilemma between the State’s duty to protect the life and health of the prisoner entrusted to its care and the prisoner’s right to exercise his freedom of expression. The prisoner hunger strike is a form of protest frequently encountered in prison and it is a form of communication but also a language used by the prisoner in order to provoke changes in the prison condition. There are no rules in the prison regulations, nor in the laws governing the legal status of prisoners, that allow the conscious will of the capable and informed subject to be opposed and forced nutrition to be carried out. However, this can in no manner make therapeutic abandonment legitimate: the medical doctor should promote every action to support the patient. In the recent opinion formulated by the CNB it was remarked how self-determination is a central concept in human rights and refers to an individual’s ability to make autonomous and free decisions about his or her life and body. PubDate: 2024-06-12 DOI: 10.1007/s11019-024-10215-w
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Abstract: Abstract In the realm of medical ethics, the foundational principle of respecting patient autonomy holds significant importance, often emerging as a central concern in numerous ethically complex cases, as authorizing medical assistance in dying or healthy limb amputation on patient request. Even though advocates for either alternative regularly utilize prima facie principles to resolve ethical dilemmas, the interplay between these principles is often the core of the theoretical frameworks. As the ramifications of the sustainability crisis become increasingly evident, there is a growing need to integrate awareness for sustainability into medical decision-making, thus reintroducing potential conflict with patient autonomy. The contention of this study is that the ethical standards established in the 20th century may not adequately address the challenges that have arisen in the 21st century. The author suggests an advanced perception of patient autonomy that prioritizes fostering patients’ knowledge, self-awareness, and sense of responsibility, going beyond a sole focus on their intrinsic values. Empowering patients could serve as a tool to align patient autonomy, beneficence, and the aim to reduce resource consumption. PubDate: 2024-06-08 DOI: 10.1007/s11019-024-10214-x
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Abstract: Abstract The shape and function of ethical imperatives may vary if the context is an interaction between strangers, or those who are well acquainted. This idea, taken up from Stephen Toulmin’s distinction between an “ethics of strangers” and an “ethics of intimacy”, can be applied to encounters in healthcare. There are situations where healthcare personnel (HCP) know their patients (corresponding to an “ethics of intimacy”) and situations where HCP do not know their patients (corresponding to “an ethics of strangers”). Does it make a difference for normative imperatives that follow from central concepts and principles in medical ethics whether HCP know their patients or not' In our view, this question has not yet been answered satisfactorily. Once we have clarified what is meant by “knowing the patient”, we will show that the distinction is particularly relevant with regard to some thorny questions of autonomy in healthcare (e.g., regarding advance directives or paternalism in the name of autonomy), whereas the differences with regard to imperatives following from the principles of justice and beneficence seem to be smaller. We provide a detailed argument for why knowing the patient is ethically valuable in encounters in healthcare. Consequently, healthcare systems should provide fertile ground for HCP to get to know their patients, and structures that foster therapeutic continuity. For this to succeed, a number of questions still need to be clarified, which is an important task for medical ethics. PubDate: 2024-06-08 DOI: 10.1007/s11019-024-10213-y
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Abstract: Abstract Human rights may feel self-apparent to us, but less than 80 years ago, one of the most advanced countries at the time acted based on an utterly contrary ideology. The view of social Darwinism that abandoned the idea of the intrinsic value of human lives instead argued that oppression of the inferior is not only inevitable but desirable. One of the many catastrophic outcomes is the medical data obtained from inhuman experiments at concentration camps. Ethical uncertainty over whether the resulting insights should be a part of the medical literature provides a chance to consider the seemingly irreplaceable social construct of human dignity. Would any medical benefit justify the utilization of this illicit data' Would utilization even qualify as an insult to the dignity of the exploited subjects, or is this a question about intersubjective meaning' This work discusses the wisdom in blind adherence to human dignity, the possibility of retrospective insults, moral complicity, contrary viewpoints, and possible resolutions. PubDate: 2024-06-06 DOI: 10.1007/s11019-024-10212-z
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Abstract: Abstract Invalidation from healthcare practitioners is an experience shared by many patients, especially those marginalized or living with contested conditions (e.g., chronic pain, fibromyalgia, etc.). Invalidation can include not taking someone’s testimony seriously, imposing one’s thoughts, discrediting someone’s emotions, or not perceiving someone’s testimony as equal and competent. Epistemic injustices, that is, the disqualification of a person as a knower, are a form of invalidation. Epistemic injustices have been used as a theoretical framework to understand invalidation that occurs in the patient-healthcare provider relationship. However, to date, the different recommendations to achieve epistemic justice have not been listed, analyzed, nor compared yet. This paper aims at better understanding the state of the literature and to critically review possible avenues to achieve epistemic justice in healthcare. A systematic and critical review of the existing literature on epistemic justice was conducted. The search in four databases identified 629 articles, from which 35 were included in the review. Strategies to promote epistemic justice that can be applied to healthcare are mapped in the literature and sorted in six different approaches to epistemic justice, including virtuous, structural, narrative, cognitive, and partnership approaches, as well as resistance strategies. These strategies are critically appraised. A patient partnership approach based on the Montreal Model, implemented at all levels of healthcare systems, seems promising to promote epistemic justice in healthcare. PubDate: 2024-06-04 DOI: 10.1007/s11019-024-10210-1
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Abstract: Abstract When considering the introduction of a new intervention in a budget constrained healthcare system, priority setting based on fair principles is fundamental. In many jurisdictions, a multi-criteria approach with several different considerations is employed, including severity and cost-effectiveness. Such multi-criteria approaches raise questions about how to balance different considerations against each other, and how to understand the logical or normative relations between them. For example, some jurisdictions make explicit reference to a large patient benefit as such a consideration. However, since patient benefit is part of a cost-effectiveness assessment it is not clear how to balance considerations of greater patient benefit against considerations of severity and cost-effectiveness. The aim of this paper is to explore the role of a large patient benefit as an independent criterion for priority setting in a healthcare system also considering severity and cost-effectiveness. By taking the opportunity cost of new interventions (i.e., the health forgone in patients already receiving treatment) into account, we argue that patient benefit has a complex relationship to priority setting. More specifically, it cannot be reasonably concluded that large patient benefits should be given priority if severity, cost-effectiveness, and opportunity costs are held constant. Since we cannot find general support for taking patient benefit into account as an independent criterion from any of the most discussed theories about distributive justice: utilitarianism, prioritarianism, telic egalitarianism and sufficientarianism, it is reasonable to avoid doing so. Hence, given the complexity of the role of patient benefit, we conclude that in priority practice, a large patient benefit should not be considered as an independent criterion, on top of considerations of severity and cost-effectiveness. PubDate: 2024-06-01 DOI: 10.1007/s11019-024-10208-9