In this paper I discuss Wakefield’s account of mental disorder as applied to the case of gender dysphoria (GD). I argue that despite being a hybrid account which brings together a naturalistic and normative element in order to avoid pathologising normal or expectable states, the theory alone is still not extensive enough to answer the question of whether GD should be classed as a disorder. I suggest that the hybrid account falls short in adequately investigating how the harm and dysfunction (...) in cases of GD relate to each other, and secondly that the question of why some dysfunction is disvalued and experienced as harmful requires further consideration. This masks further analysis of patients’ distress and results in an unhelpful overlap of two types of clinical patients within a diagnosis of GD; those with gender-role dysphoria and those with sex dysphoria. These two conditions can be associated with different harms and dysfunctions but Wakefield’s hybrid account does not have the tools to recognise this. This misunderstanding of the sources of dysfunction and harm in those diagnosed with GD risks ineffective treatment for patients and reinforcing the very same prejudiced norms which were conducive to the state being experienced as harmful in the first place. The theory needs to engage, to a surprising and so far unacknowledged extent, with sociological concepts such as the categorisation and stratification of groups in society and the mechanism of systemic oppression, in order to answer the question of whether GD should be classed as a mental disorder. Only then can it successfully avoid pathologising normal or expectable states, as has been seen in past ‘illnesses’ such as homosexuality and ‘drapetomania’. (shrink)

This paper contains a brief comparative analysis of some philosophical and scientific discourses on human and animal health and welfare, focusing mainly on the welfare of sentient animals. The paper sets forth two kinds of proposals for the analysis of animal welfare which do not appear in the contemporary philosophical discussion of human welfare, viz. the coping theory of welfare and the theory of welfare in terms of natural behaviour. These proposals are scrutinized in the light of some similar theories (...) dealing with human health and quality of life. My conclusion is that the coping theory and the natural behaviour theory are not in themselves adequate for the characterization of welfare, either for humans or for sentient animals. I contend, finally, that, in the light of the previous discussion, there are good arguments for a particular set of analyses of both animal and human welfare, viz. the ones that are based on the notions of preference satisfaction and positive subjective experiences. (shrink)

After describing the disorder of psychopathy, I examine the theories and the evidence concerning the psychopaths’ deficient moral capacities. I first examine whether or not psychopaths can pass tests of moral knowledge. Most of the evidence suggests that they can. If there is a lack of moral understanding, then it has to be due to an incapacity that affects not their declarative knowledge of moral norms, but their deeper understanding of them. I then examine two suggestions: it is their deficient (...) practical reason or their stunted emotions that are at fault. The evidence supports both explanations. I conclude with an overview of the debate concerning whether they are morally or legally responsible for their actions. (shrink)

Staggering advances in biotechnology within the past decade have given rise to pharmacological, surgical and prosthetic techniques capable of enhancing human functioning rather than merely treating or preventing disease. Bioenhancement technologies range from nootropics capable of enhancing cognitive abilities to distraction osteogenesis, a surgical technique capable of increasing height through limb lengthening. This paper examines whether the use of bioenhancements falls inside or outside the proper boundaries of healthcare, and if so, whether clinicians have professional responsibilities to administer bioenhancements to (...) patients. After explicating two theoretical approaches to the concept of health, one objectivist and the other constructivist, I contend that clinicians' corresponding professional responsibilities hinge on which philosophical account of health is endorsed, and illustrate how the lack of analytic clarity with respect to this concept can lead to defective positions on the place of bioenhancements in healthcare. With this conceptual framework in place, an account of health as a cluster concept that incorporates both constructivist and objectivist components is developed and defended. (shrink)

Zusammenfassung Die informierte Einwilligung von Teilnehmer:innen gilt in vielen Fällen als Voraussetzung auch für die rein datenbasierte medizinische Forschung. In diesem Kontext wird ein Modell der breiten Einwilligung (_Broad Consent_) diskutiert. In Deutschland hat die Medizininformatik-Initiative einen konkreten Vorschlag für deutsche Kliniken ausgearbeitet, der eine Gültigkeit der Einwilligung für einen Zeitraum von 30 Jahren vorsieht. Der vorliegende Artikel diskutiert vor diesem Hintergrund die Frage, wie der Anspruch der Informiertheit in dieser zeitlichen Perspektive einzuordnen ist. Die Praxis der Einwilligung wird dabei (...) so verstanden, dass sie auf die Verwirklichung von Wohlergehen, persönlicher Souveränität und Vertrauen ausgerichtet ist. Eine anzunehmende Informationsasymmetrie zwischen Forschungsteilnehmenden, Forschenden, und datenspeichernden Institutionen wird dabei als spezifisches Kontextmerkmal herausgestellt. Um dieser Informationsasymmetrie in angemessener Weise zu begegnen, so die These, ist eine kontinuierliche Weitergabe von verständlich aufbereiteten Informationen an Forschungsteilnehmende notwendig, um die Wahrnehmung persönlicher Souveränität zu ermöglichen. (shrink)

ContextIn many cases, informed consent of participants is considered a prerequisite even for exclusively data-based medical research. In this context, a model of broad consent is being discussed. In Germany, the Medizininformatik-Initiative (Medical Informatics Initiative) has developed a proposal for broad consent for German hospitals which suggests a validity period of 30 years.Definition of the problemAgainst this background, the article discusses how the claim of consent beinginformedhas to be regarded in a temporal perspective. The practice of consent is here understood (...) to be oriented towards the realization of well-being, personal sovereignty, and trust. In the context of medical research, an asymmetry of access to information between research participants, researchers, and data-storing institutions has to be assumed.Argument and conclusionThe article argues that in order to appropriately address this information asymmetry, a continuous dissemination of comprehensibly prepared information to research participants is necessary to enable personal sovereignty. (shrink)

Systems medicine, which is based on computational modelling of biological systems, is emerging as an increasingly prominent part of the personalized medicine movement. It is often promoted as ‘P4 medicine’. In this article, we test promises made by some of its proponents that systems medicine will be able to develop a scientific, quantitative metric for wellness that will eliminate the purported vagueness, ambiguity, and incompleteness—that is, normativity—of previous health definitions. We do so by examining the most concrete and relevant evidence (...) for such a metric available: a patent that describes a systems medicine method for assessing health and disease. We find that although systems medicine is promoted as heralding an era of transformative scientific objectivity, its definition of health seems at present still normatively based. As such, we argue that it will be open to influence from various stakeholders and that its purported objectivity may conceal important scientific, philosophical, and political issues. We also argue that this is an example of a general trend within biomedicine to create overly hopeful visions and expectations for the future. (shrink)

Recent criticisms of medicine converge on fundamental questions about the aim of medicine. The main task of this paper is to propose an account of the aim of medicine. Discussing and rejecting the initially plausible proposal according to which medicine is pathocentric, the paper presents and defends the Autonomy Thesis, which holds that medicine is not pathocentric, but sanocentric, aiming to promote health with the final aim to enhance autonomy. The paper closes by considering the objection that the Autonomy Thesis (...) is overly permissive and allows many highly controversial procedures as legitimate parts of medicine. (shrink)

If it is true that health is a priority objective of medicine, then medical practice can only be successful if the meaning of the term “health” is known. Various attempts have been made over the years to define health. This paper proposes a new definition. In addition to current health concepts, it also takes into account the distinction between specifically human health and health as the absence of disease and illness—i.e. small health. The feeling of leading a life that makes (...) sense plays a key role in determining specifically human great health. (shrink)

Despite the longstanding debate on definitions of health and disease concepts, and the multitude of accounts that have been developed, no consensus has been reached. This is problematic, as the way we define health and disease has far-reaching practical consequences. In recent contributions it is proposed to view health and disease as practical- and plural concepts. Instead of searching for a general definition, it is proposed to stipulate context-specific definitions. However, it is not clear how this should be realized. In (...) this paper, we review recent contributions to the debate, and examine the importance of context-specific definitions. In particular, we explore the usefulness of analyzing the relation between the practical function of a definition and the context it is deployed in. We demonstrate that the variety of functions that health and disease concepts need to serve makes the formulation of monistic definitions not only problematic but also undesirable. We conclude that the analysis of the practical function in relation to the context is key when formulating context-specific definitions for health and disease. At last, we discuss challenges for the pluralist stance and make recommendations for future research. (shrink)

This paper reconsiders some controversial aspects of Plato’s characterization of justice as psychic health. It rejects three prevailing interpretations of Plato’s ‘medicalization of justice’, while providing a new reading that exonerates Plato from the charges raised by his critics. I argue that Plato’s account articulates an unprecedented theory of mental health in the history of Western philosophy and medicine. This account is put forward as an alternative to the bio-medical model of mental health developed by Hippocratic doctors. Finally, I discuss (...) the practical implications of Plato’s account of justice for his ethical and political theory. (shrink)

A partir de los análisis de Illich y Foucault se sostiene que el desarrollo de la medicina moderna ocurre paralelo a una cada vez más profunda medicalización que conlleva a importantes cambios en lo que respecta al significado del cuerpo y de la salud. Una de las expresiones actuales más paradigmáticas de estas transformaciones se observa en la medicina preventiva de alta tecnología, en cuanto ella contribuye no sólo a diluir la experiencia subjetiva de enfermedad y sanidad, sino que también (...) dispone al cuerpo para formas sofisticadas de control y poder. El objetivo de este estudio, sin embargo, no es demonizar toda práctica preventiva, sino más bien, denunciar la medicalización como problema creciente y ofrecer elementos teóricos y filosóficos que permitan comprender mejor este fenómeno y develar algunos de sus fundamentos normativos ocultos. (shrink)

The combination of breeding for increased production and the intensification of housing conditions have resulted in increased occurrence of behavioral, physiological, and immunological disorders. These disorders affect health and welfare of production animals negatively. For future livestock systems, it is important to consider how to manage and breed production animals. In this paper, we will focus on selective breeding of laying hens. Selective breeding should not only be defined in terms of production, but should also include traits related to animal (...) health and welfare. For this we like to introduce the concept of robustness. The concept of robustness includes individual traits of an animal that are relevant for health and welfare. Improving robustness by selective breeding will increase (or restore) the ability of animals to interact successfully with the environment and thereby to make them more able to adapt to an appropriate husbandry system. Application of robustness into a breeding goal will result in animals with improved health and welfare without affecting their integrity. Therefore, in order to be ethically acceptable, selective breeding in animal production should accept robustness as a breeding goal. (shrink)

The article defines a comprehensive concept of cognitive objectivity applied to embodied subjects in health care. The aims of this study were: to specify some necessary conditions for the definition of a CCCO that will allow objective descriptions and assessments in health care, to formulate criteria for application of such a CCCO, and to investigate the usefulness of the criteria in work disability assessments in medical certificates from health care provided for social security purposes. The study design was based on (...) a philosophical conceptual analysis of objectivity and subjectivity, the phenomenological notions ‘embodied subject’, ‘life-world’, ‘phenomenological object’ and ‘empathy’, and an interpretation of certificates as texts. The study material consisted of 18 disability assessments from a total collection of 86 medical certificates provided for social security purposes, written in a Norwegian hospital-based mental health clinic. Four necessary conditions identified for defining a CCCO were: acknowledging the patient’s social context and life-world, perceiving patients as cognitive objects providing a variety of meaningful data, interpreting data in context, and using general epistemological principles. The criteria corresponding to these conditions were: describing the patient’s social context and recognizing the patient’s perspective, taking into consideration a variety of quantitative and qualitative data drawn from the clinician’s perceptions of the patient as embodied subject, being aware of the need to interpret the data in context, and applying epistemological principles. Genuine communication is presupposed. These criteria were tested in the work disability assessments of medical certificates. The criteria were useful for understanding both how objectivity fails during work disability assessments and how it can be improved in the writing of certificates. The article specifies four necessary conditions for the definition of a CCCO in health care and social security medicine and the corresponding criteria for its application. Analysis of the objectivity of work disability assessments in medical certificates for social security confirmed the usefulness of the criteria. (shrink)

Background The article defines a comprehensive concept of cognitive objectivity applied to embodied subjects in health care. The aims of this study were: to specify some necessary conditions for the definition of a CCCO that will allow objective descriptions and assessments in health care, to formulate criteria for application of such a CCCO, and to investigate the usefulness of the criteria in work disability assessments in medical certificates from health care provided for social security purposes. Methods The study design was (...) based on a philosophical conceptual analysis of objectivity and subjectivity, the phenomenological notions ‘embodied subject’, ‘life-world’, ‘phenomenological object’ and ‘empathy’, and an interpretation of certificates as texts. The study material consisted of 18 disability assessments from a total collection of 86 medical certificates provided for social security purposes, written in a Norwegian hospital-based mental health clinic. Results Four necessary conditions identified for defining a CCCO were: acknowledging the patient’s social context and life-world, perceiving patients as cognitive objects providing a variety of meaningful data, interpreting data in context, and using general epistemological principles. The criteria corresponding to these conditions were: describing the patient’s social context and recognizing the patient’s perspective, taking into consideration a variety of quantitative and qualitative data drawn from the clinician’s perceptions of the patient as embodied subject, being aware of the need to interpret the data in context, and applying epistemological principles. Genuine communication is presupposed. These criteria were tested in the work disability assessments of medical certificates. The criteria were useful for understanding both how objectivity fails during work disability assessments and how it can be improved in the writing of certificates. Conclusion The article specifies four necessary conditions for the definition of a CCCO in health care and social security medicine and the corresponding criteria for its application. Analysis of the objectivity of work disability assessments in medical certificates for social security confirmed the usefulness of the criteria. (shrink)

The concept of responsibility for health is a significant feature of health discourse and public health policy, but application of the concept is poorly understood. This paper offers an analysis of the concept in two ways. Following an examination of the use of the word ‘responsibility’ in the nursing and wider health literature using three examples, the concept of ‘responsibility for health’ as fulfilling a social function is discussed with reference to policy documents from the UK. The philosophical literature on (...) moral responsibility is introduced, and in considering two versions, reactive attitudes and accountability, it is argued that in application both can be regarded, though with different emphasis, as being constituted in three parts: a responsible agent; having obligations ; and being susceptible to being held responsible if he fails to meet them. The three‐stage model is consistent with the examples of the word responsibility in use, but application to the social function model causes a number of problems for healthcare practice, especially for the reactive attitudes account. Apart from considerable problems in stating what exactly the obligations are and how they can be justified; and how blame might justly be apportioned and by whom, the very ideas of obligation and blame are in conflict within healthcare systems and professional nursing practice which have foundations deeply embedded in the notion of the supremacy of personal autonomy. It is concluded that current application of the concept of responsibility for health is conceptually incoherent, and if it is to retain its place in health policy and discourse, urgent remedy is required. (shrink)

Is food’s naturalness conceptually connected to its healthiness? Answering the question requires spelling out the following: (1) What is meant by the healthiness of food? (2) What different conceptual meanings the term natural has in the context of food? (3) Are some of those meanings connected to the healthiness of food? In this paper the healthiness of food is understood narrowly as food’s accordance with nutritional needs of its eater. The connection of healthiness to the following five food-related senses of (...) the term “natural’’ is analyzed: naturalness as nutritive suitability, naturalness as moderate need satisfaction, naturalness as lack of human influence, naturalness as authenticity, and naturalness as familiarity. It is concluded that some very common current uses of the term “natural,” such as naturalness as lack of human influence, are not conceptually connected to the healthiness of food. Nevertheless, the first two senses of naturalness are strongly conceptually connected to healthiness in the food context and the last one may be indirectly related to it. Thus, desire for natural food is not necessarily mistaken and misguided. (shrink)

The concepts of disease, illness and sickness capture fundamentally different aspects of phenomena related to human ailments and healthcare. The philosophy and theory of medicine are making manifold efforts to capture the essence and normative implications of these concepts. In parallel, socio-empirical studies on patients’ understanding of their situation have yielded a comprehensive body of knowledge regarding subjective perspectives on health-related statuses. Although both scientific fields provide varied valuable insights, they have not been strongly linked to each other. Therefore, the (...) article aims to scrutinise the normative-ethical implications of patient perspectives in building a bridge to the empirical ethics debates. Three potential fields of tension between the illness and the disease perspective are presented. Consequently, findings from empirical research examining patient perspectives on illness are displayed and the practical implications and associated ethical issues which arise are discussed. This leads to the conclusion that an explicit and elaborate empirical-ethical methodology is needed to deal appropriately with the complex interaction between patients’ views and the medico-professional view of disease. Kon’s four-stage model of normative-empirical collaboration is then applied against the background of empirical data on patient perceptions. Starting from this exemplary approach, the article suggests employing empirical-ethical frameworks for further research on the conceptual and normative issues, as they help to integrate perspectives from the philosophy of medicine with socio-empirical research. The combination of theoretical and empirical perspectives suggested contributes to a more nuanced discussion of the normative impact of patients’ actual understanding of illness. Further empirical research in this area would profit from explicitly considering potential ethical issues to avoid naturalistic fallacies or crypto-normative conclusions that may compromise healthcare practice. Vice versa, medico-theoretical debates could be enriched by integrating subjective views of those people who are immediately affected. (shrink)

Recent medical innovations like ‘omics’ technologies, mobile health (mHealth) applications or telemedicine are perceived as part of a shift towards a more preventive, participatory and affordable healthcare model. These innovations are often regarded as ‘disruptive technologies’. It is a topic of debate to what extent these technologies may transform the medical enterprise, and relatedly, what this means for medical ethics. The question of whether these developments disrupt established ethical principles like respect for autonomy has indeed received increasing normative attention during (...) the past years. Yet, more fundamental ethical considerations of a possible disruption of the concept of ‘medical necessity’ (and the potential ensuing clinical ramifications) have been limited if not absent. It is our modest – though morally and practically relevant – aim to address this objective in this article, by exploring how the current wave of allegedly disruptive innovation is invoking a resurgence of this concept and related debates on ‘the’ goal(s) of medicine. (shrink)

Teaching ethics in public health programmes is not routine everywhere – at least not in most schools of public health in the European region. Yet empirical evidence shows that schools of public health are more and more interested in the integration of ethics in their curricula, since public health professionals often have to face difficult ethical decisions.

Alzheimer’s Disease (AD) provides an excellent case study to investigate emerging conceptions of health, disease, pre-disease, and risk. Two scientific working groups have recently reconceptualized AD and created a new category of asymptomatic biomarker positive persons, who are either said to have preclinical AD, or to be at risk for AD. This article examines how prominent theories of health and disease would classify this condition: healthy or diseased? Next, the notion of being “at risk”—a state somewhere in-between health and disease—is (...) considered from various angles. It is concluded that medical-scientific developments urge us to let go of dichotomous ways of understanding disease, that the notion of “risk,” conceptualized as an increased chance of getting a symptomatic disease, might be a useful addition to our conceptual framework, and that we should pay more attention to the practical usefulness and implications of the ways in which we draw lines and define concepts. (shrink)

The paper contrasts Lennart Nordenfelt’s normative theory of health with the naturalists’ point of view, especially in the version developed by Christopher Boorse. In the first part it defends Boorse’s analysis of disease against the charge that it falls short of its own standards by not being descriptive. The second part of the paper sets out to analyse the positive concept of health and introduces a distinction between a positive definition of health and a positive conception of health. An objection (...) against Nordenfelt’s account is developed by making use of a specific example of an ambitious athlete. It is stated that Nordenfelt’s conceptualisation includes too many phenomena under the umbrella of ill health. An ideal conception of health like Nordenfelt’s is in danger of supporting medicalization. In conclusion, although Nordenfelt’s theory is not altogether rejected and even seen in congruence with Boorse’s account, it is claimed that the naturalistic framework should obtain conceptual priority. (shrink)

Psychiatry is becoming a cognitive neuroscience. This new paradigm not only aims to give new ways for explaining mental diseases by naturalizing them, but also to have an influence on different levels of psychiatric norms. We tried here to verify whether a biological paradigm is able to fulfill this normative goal. We analyzed three main normative assumptions that is to say the will of giving psychiatry a valid nosology, a rigorous definition of what is a mental disease, and new tools (...) for destigmatizing mentally ill patients. Although these different kinds of normativity are very heterogeneous, we must conclude that, in all these cases, biological psychiatry is a failure, in part because of a lack of epistemological conceptualization. (shrink)

The paper contrasts Lennart Nordenfelt’s normative theory of health with the naturalists’ point of view, especially in the version developed by Christopher Boorse. In the first part it defends Boorse’s analysis of disease against the charge that it falls short of its own standards by not being descriptive. The second part of the paper sets out to analyse the positive concept of health and introduces a distinction between a positive definition of health (‘health’ is not defined as absence of disease (...) but in positive terms) and a positive conception of health (health is seen as an ideal). An objection against Nordenfelt’s account is developed by making use of a specific example of an ambitious athlete. It is stated that Nordenfelt’s conceptualisation includes too many phenomena under the umbrella of ill health. An ideal conception of health like Nordenfelt’s is in danger of supporting medicalization. In conclusion, although Nordenfelt’s theory is not altogether rejected and even seen in congruence with Boorse’s account, it is claimed that the naturalistic framework should obtain conceptual priority. (shrink)

It is commonly thought that mental disorder is a valid concept only in so far as it is an extension of or continuous with the concept of physical disorder. A valid extension has to meet two criteria: determination and coherence. Essentialists meet these criteria through necessary and sufficient conditions for being a disorder. Two Wittgensteinian alternatives to essentialism are considered and assessed against the two criteria. These are the family resemblance approach and the secondary sense approach. Where the focus is (...) solely on the characteristics or attributes of things, both these approaches seem to fail to meet the criteria for valid extension. However, this focus on attributes is mistaken. The criteria for valid extension are met in the case of family resemblance by the pattern of characteristics associated with a concept, and by the limits of intelligibility of applying a concept. Secondary sense, though it may have some claims to be a good account of the relation between physical and mental disorder, cannot claim to meet the two criteria of valid extension. (shrink)

In face of the multiple controversies surrounding the DSM process in general and the development of DSM-5 in particular, we have organized a discussion around what we consider six essential questions in further work on the DSM. The six questions involve: 1) the nature of a mental disorder; 2) the definition of mental disorder; 3) the issue of whether, in the current state of psychiatric science, DSM-5 should assume a cautious, conservative posture or an assertive, transformative posture; 4) the role (...) of pragmatic considerations in the construction of DSM-5; 5) the issue of utility of the DSM - whether DSM-III and IV have been designed more for clinicians or researchers, and how this conflict should be dealt with in the new manual; and 6) the possibility and advisability, given all the problems with DSM-III and IV, of designing a different diagnostic system. Part I of this article will take up the first two questions. With the first question, invited commentators express a range of opinion regarding the nature of psychiatric disorders, loosely divided into a realist position that the diagnostic categories represent real diseases that we can accurately name and know with our perceptual abilities, a middle, nominalist position that psychiatric disorders do exist in the real world but that our diagnostic categories are constructs that may or may not accurately represent the disorders out there, and finally a purely constructivist position that the diagnostic categories are simply constructs with no evidence of psychiatric disorders in the real world. The second question again offers a range of opinion as to how we should define a mental or psychiatric disorder, including the possibility that we should not try to formulate a definition. The general introduction, as well as the introductions and conclusions for the specific questions, are written by James Phillips, and the responses to commentaries are written by Allen Frances. (shrink)

In face of the multiple controversies surrounding the DSM process in general and the development of DSM-5 in particular, we have organized a discussion around what we consider six essential questions in further work on the DSM. The six questions involve: 1) the nature of a mental disorder; 2) the definition of mental disorder; 3) the issue of whether, in the current state of psychiatric science, DSM-5 should assume a cautious, conservative posture or an assertive, transformative posture; 4) the role (...) of pragmatic considerations in the construction of DSM-5; 5) the issue of utility of the DSM - whether DSM-III and IV have been designed more for clinicians or researchers, and how this conflict should be dealt with in the new manual; and 6) the possibility and advisability, given all the problems with DSM-III and IV, of designing a different diagnostic system. Part I of this article took up the first two questions. Part II will take up the second two questions. Question 3 deals with the question as to whether DSM-V should assume a conservative or assertive posture in making changes from DSM-IV. That question in turn breaks down into discussion of diagnoses that depend on, and aim toward, empirical, scientific validation, and diagnoses that are more value-laden and less amenable to scientific validation. Question 4 takes up the role of pragmatic consideration in a psychiatric nosology, whether the purely empirical considerations need to be tempered by considerations of practical consequence. As in Part 1 of this article, the general introduction, as well as the introductions and conclusions for the specific questions, are written by James Phillips, and the responses to commentaries are written by Allen Frances. (shrink)

Healthcare policy and academic literature have promoted improving the transitional care of young people leaving child and adolescent mental health services. Despite the availability of guidance on good practice, there seems to be no readily accessible, coherent ethical analysis of transition. The ethical principles of non-maleficence, beneficence, justice and respect for autonomy can be used to justify the need for further enquiry into the ethical pros and cons of this drive to improve transitional care. The objective of this systematic review (...) was therefore to systematically search for existing ethical literature on child- to adult-orientated health service transitions and to critically appraise and collate the literature, whether empirical or normative. A wide range of bioethics, biomedical and legal databases, grey literature and bioethics journals were searched. Ancestral and forward searches of identified papers were undertaken. Key words related to transition, adolescence and young adulthood, ethics, law and health. The timeframe was January 2000 to at least March 2016. Titles, abstracts and, where necessary, full articles were screened and duplicates removed. All included articles were critically appraised and a narrative synthesis produced. Eighty two thousand four hundred eighty one titles were screened, from which 96 abstracts were checked. Forty seven full documents were scrutinised, leading to inclusion of two papers. Ancestral and forward searches yielded four further articles. In total, one commentary, three qualitative empirical studies and two clinical ethics papers were found. All focused on young people with complex care needs and disabilities. The three empirical papers had methodological flaws. The two ethical papers were written from a clinical ethics context rather than using a bioethical format. No literature identified specifically addressed the ethical challenges of balancing the delivery of transitional care to those who need it and the risk of pathologizing transient and self-limited distress and dysfunction, which may be normal during adolescence. There is very little research on ethical aspects of transitional care. Most existing studies come from services for young people with complex care needs and disabilities. There is much scope for improvement in the amount and quality of empirical research and ethical analysis in this area. (shrink)

BackgroundThis paper represents a portion of the findings from one of the first research studies eliciting the lived experience of adults with an early diagnosis of Phenylketonuria living in Ireland. Ireland has one of the highest prevalence rates of PKU in Europe, however, little is known about the experience of Irish adults with PKU. Furthermore, Ireland is one of the first countries in the world to introduce neonatal screening followed by the introduction of long-term dietary therapy over 50 years ago. (...) This study presents the first comprehensive assessment of the lived experience of Irish adults with PKU on long term dietary therapy.MethodsNarrative data was collected from eleven self-selected participants, using semi-structured interviews. The interviews were divided into five sections focused on eliciting a holistic understanding of the lived experience of adults with PKU living in Ireland. Thematic analysis was guided by Colaizzi's Framework in conjunction with NVivo qualitative data analysis software.FindingsFindings from the original research encompassed a broad understanding of the lived experience of adults with PKU living in Ireland, including factors influencing dietary therapy and managing PHE blood levels. The themes being discussed within this article are those which appear to be least represented within current literature: living with PKU, including reproductive health, the importance of self-management and establishing routine, support networks in adulthood and concerns regarding aging with PKU.ConclusionIt was evident from the findings that a diagnosis of PKU can influence how adults with PKU may experience aging and their own mortality. These findings offer new insight into the vulnerability attached to the experience of aging with PKU and may be beneficial to advocacy groups and for future development of policy and practice. (shrink)

Contemporary philosophy of health and disease has been quite focused on the problem of determining the nature of the concepts of health and disease from a scientific point of view. Some theorists claim and argue that these concepts are value-free and descriptive in the same sense as the concepts of atoms, metal, and rain are value-free and descriptive. According to this descriptive or naturalist line of thought, the notions of health and disease are furthermore related to the idea of a (...) normal or natural function. A bodily organ is healthy insofar as it functions normally, and it is diseased when it does not fulfill its functions. Other philosophers claim that the concept of health, together with other medical concepts, is essentially value-laden. To establish that a person is healthy does not just entail some objective inspection and measurement. It presupposes also an evaluation of the general state of the person. My purpose in this article is to scrutinize the relation between the notion of a natural function, on the one hand, and the concepts of health and disease on the other. In characterizing the notion of a normal function I will follow the classic analysis put forward by American philosopher Christopher Boorse. I will criticize Boorse’s proposal mainly by using arguments from the analysis of ordinary lay and medical language. I ask questions such as: what do we normally mean when we ascribe health or disease to a person? In the end I will recommend an analysis of these and related medical notions, which is unrelated to the notion of a natural function as normally interpreted. (shrink)

The capability approach, originated by Amartya Sen is among the most comprehensive and influential accounts of justice that applies to issues of health and health care. However, although health is always presumed as an important capability in Sen’s works, he never manages to fully explain why health is distinctively valuable. This paper provides an explanation. It does this by firstly laying out the general capability-based argument for health justice. It then discusses two recent attempts to justify why health is distinctively (...) valuable from within a capability framework – these are Sridhar Venkatapuram’s conception of health as the central human meta-capability and, respectively, Norman Daniels’ embrace of the capability metric in his use of Rawls’ principle of fair equality of opportunity. The paper argues that none of these accounts succeed in providing a plausible justification of the value of health. Finally, the paper suggests an alternative more complex justification, closely tied to different but central element of the capability view, that captures the core intuitions of both Venkatapuram and Daniels’ accounts but without being vulnerable to the objections raised against each of them. This, the paper concludes, provides a promising ground on which the capability view on health justice should be founded. (shrink)

In 2003, the Food and Drug Administration approved the use of growth hormone treatment for idiopathic short stature children, i.e. children shorter than average due to an unknown medical cause. Given the absence of any pathological conditions, this decision has been contested as a case of medicalisation. The aim of this paper is to broaden the debate over the reasons for and against the treatment, to include considerations of the sociocultural phenomenon of the medicalisation of short stature, by means of (...) a critical understanding of the concept of medicalisation. After defining my understanding of medicalisation and describing both the treatment and the condition of idiopathic short stature, I will problematise two fundamental issues: the medical/non-medical distinction and the debate about the goals of medicine. I will analyse them, combining perspectives of bioethics, medical sociology, philosophy of medicine and medical literature, and I will suggest that there are different levels of normativity of medicalisation. Ultimately, this study shows that: the definition of idiopathic short stature, focusing only on actual height measurement, does not provide enough information to assess the need for treatment or not; the analysis of the goals of medicine should be broadened to include justifications for the treatment; the use of growth hormone for idiopathic short stature involves strong interests from different stakeholders. While the treatment might be beneficial for some children, it is necessary to be vigilant about possible misconduct at different levels of medicalisation. (shrink)

Our goal in this paper is to reassess the relationship between norms and life by drawing on the philosophy of Georges Canguilhem, particularly some of his unpublished lectures about teratology and sexual determination. First, we discuss the difficulties Canguilhem identified in the introduction of life and sexuality as objects of philosophical reflection. Second, we reassess Canguilhem’s understanding of normativity as rooted in life and the axiological activity of the living. Third, we analyze how Canguilhem drew from past and contemporary teratology (...) to conceive of the notions of anomaly and abnormality. Finally, we reconstruct Canguilhem’s analysis of a case of hermaphroditism, highlighting how he presented it as evidence that sexual determination is the result of a normative choice. One of the key contributions of the paper to scholarly literature on Canguilhem is a better understanding of his notion of choice, which was considered not the conscious and intentional act of a subject but rather an axiological activity of the living. We conclude by positioning Canguilhem’s concept of normativity and his belief that norms are produced by the living in relation to the naturalist/normativist divide in medicine. (shrink)

The definitions and conceptualizations of health, and the management of healthcare have been challenged by the current global scenarios (e.g., new diseases, new geographical distribution of diseases, effects of climate change on health, etc.) and by the ongoing scholarship in humanities and science. In this paper we question the mainstream definition of health adopted by the WHO—‘a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity’ (WHO in Preamble to the constitution of (...) the World Health Organization as adopted by the international health conference, The World Health Organization, 1948)—and its role in providing tools to understand what health is in the contemporary context. More specifically, we argue that this context requires to take into account the role of the environment both in medical theory and in the healthcare practice. To do so, we analyse WHO documents dated 1984 and 1986 which define health as ‘coping with the environment’. We develop the idea of ‘coping with the environment’, by focusing on two cardinal concepts: adaptation in public health and adaptivity in philosophy of biology. We argue that the notions of adaptation and adaptivity can be of major benefit for the characterization of health, and have practical implications. We explore some of these implications by discussing two recent case studies of adaptivity in public health, which can be valuable to further develop adaptive strategies in the current pandemic scenario: community-centred care and microbiologically healthier buildings. (shrink)

Claims about whether or not infertility is a disease are sometimes invoked to defend or criticize the provision of state-funded treatment for infertility. In this paper, I suggest that this strategy is problematic. By exploring infertility through key approaches to disease in the philosophy of medicine, I show that there are deep theoretical disagreements regarding what subtypes of infertility qualify as diseases. Given that infertility's disease status remains unclear, one cannot uncontroversially justify or undermine its claim to medical treatment by (...) claiming that it is or is not a disease. Instead of focusing on disease status, a preferable strategy to approach the debate about state-funded treatment is to explicitly address the specific ethical considerations raised by infertility. I show how this alternative strategy can be supported by a recent theoretical framework in the philosophy of medicine, which avoids the problems associated with the concepts of health and disease. (shrink)

The medical profession is not to blame for the limitations of the biomedical model with which it is often associated; the biology upon which that model is built is incomplete and bears some of the responsibility. Some of the more fundamental aspects of biological theory which are currently missing from the biomedical model need to be introduced in order to help provide a better description of the integrated biology involved. AIMS AND OBJECTIVES: By considering the biological nature of the individual (...) human being as an organism, this article introduces a brief sketch of a new biomedical model of the individual as a biological entity. Core to this model is the idea of individual survival in the 'struggle for existence' introduced 150 years ago by Charles Darwin in 'On the Origin of Species'. (shrink)

Definitions of health in terms of some kind of balance form a category of their own within the sphere of health definition. Such definitions have their roots in the beginnings of scientific medicine, and popular versions are common among lay people. It has even been claimed that balance is fundamental to health for all species. Several present-day definitions of health in terms of balance are presented here. Particular attention is given to the call for a definition of health applicable to (...) both humans and animals within the One Health approach, involving human medicine, veterinary medicine and ecology. Definitions in terms of balance have been suggested but none has been thoroughly analysed with regard to its suitability. There are therefore three concerns in this paper. The first is to introduce versions of the category of balance, as a first step towards a nomenclature of health definitions. The second is to analyse the claim made recently that balance is a universal criterion of health in all species including humans. The third is to ascertain whether any of the versions discussed is suited to the One Health approach. (shrink)

This paper critically examines the volitional normative model of disease and its underlying nanotechnologic vision of medicine both defended by Robert Freitas. Having provided an account of this vision, we explicate the highlight of the model, which is a concept of disease based on individual values and preferences. The model’s normative positions are then critiqued based on our argument that the epistemic basis of Freitas’s vision of nanotechnologic medicine and, by extension, of his volitional normative model of disease is scientifically (...) flawed. An ethical and social critique of the model is then conducted on the basis of the model’s implicit ethical underpinnings. We argue that Freitas fails to justify the normativity of his model by not addressing the ethical issues that permeate it, one of which is the question of responsibility regarding the development of medical nanotechnology and the practice of new forms of medicine such as the one he envisions. We conclude that, due to its radically individualistic position, the model implies an unjustified view of nanoethics and relegates this field of ethics to the periphery of discussions of nanomedicine. (shrink)

This paper suggests the adoption of a ‘capability approach’ to key concepts in healthcare. Recent developments in theoretical approaches to concepts such as ‘health’ and ‘disease’ are discussed, and a trend identified of thinking of health as a matter of having the capability to cope with life’s demands. This approach is contrasted with the WHO definition of health and Boorse’s biostatistical account. We outline the ‘capability approach’, which has become standard in development ethics and economics, and show how existing work (...) in those areas can profitably be adapted to healthcare. Cases are used to illustrate the value of adopting a capability approach. (shrink)

Phenomenology in medicine’s main contribution is to present a first-person narrative of illness, in an effort to aid medicine in reaching an accurate disease diagnosis and establishing a personal relationship with patients whose lived experience changes dramatically when severe disease and disabling condition is confirmed. Once disease is diagnosed, the lived experience of illness is reconstructed into a living-with-disease narrative that medicine’s biological approach has widely neglected. Key concepts like health, sickness, illness, disease and the clinical encounter are being diversely (...) and ambiguously used, leading to distortions in socio-medical practices such as medicalization, pharmaceuticalization, emphasis on surveillance medicine. Current definitions of these concepts as employed in phenomenology of medicine are revised, concluding that more stringent semantics ought to reinforce an empirical phenomenological or postphenomenological approach. (shrink)

In Peter Singer’s article “The Challenge of Brain Death for the Sanctity of Life Ethic”, he articulates that ethics has always played an important role in defining death. He claims that the demand for redefining death spreads rather from new ethical challenges than from a new, scientifically improved understanding of the nature of death. As thorough as his plea for dismissal of the brain-death definition is, he does not avoid the depiction of the complementary relationship between science and ethics. Quite (...) the opposite, he tends to formulate a stronger, philosophically more consistent argument to help science and medical practitioners to define life, death, and the quality of life. In my commentary, I would like to focus on two issues presented in Singer’s study. Firstly, I will critically analyze the relationship between science and ethics. Secondly, I will follow on from Singer’s arguments differentiating between end of life as an organism and end of life as a person. The latter case is necessarily linked with man’s participation in her/his life, setting life goals, and fulfilling her/his idea of good life. Through the consequential definition of the dignity in ethics of social consequences, I will try to support Singer’s idea. (shrink)

The literature on health and diseases is usually presented as an opposition between naturalism and normativism. This article argues that such a picture is too simplistic: there is not one opposition between naturalism and normativism, but many. I distinguish four different domains where naturalist and normativist claims can be contrasted: (1) ordinary usage, (2) conceptually clean versions of “health” and “disease,” (3) the operationalization of dysfunction, and (4) the justification for that operationalization. In the process I present new arguments in (...) response to Schwartz (2007) and Hausman (2012) and expose a link between the arguments made by Schwartz (2007) and Kingma (2010). Distinguishing naturalist claims at these four domains will allow us to make progress by (1) providing more nuanced, intermediate positions about a possible role for values in health and disease; and (2) assisting in the addressing of relativistic worries about the value-ladenness of health and disease. (shrink)

The traditional contrast between naturalist and normativist disease concepts fails to capture the most salient features of the health concepts debate. By using health concepts as a window on background notions of medical science and ethics, I show how Christopher Boorse (an influential naturalist) and Lennart Nordenfelt (an influential normativist) actually share deep assumptions about the character of medicine. Their disease concepts attempt, in different ways, to shore up the same medical model. For both, health concepts function like demarcation criteria (...) in the philosophy of science: they mark off the jurisdiction of medical science, and protect it from an inappropriate intrusion of socioeconomic factors, which threaten the integrity of modern medicine. These views are challenged by new developments in healthcare such as managed care and total quality review. To frame the health concepts debate in a way that better captures the issues integral to these new developments, I advance a new way of reading the distinction between weak and strong normativists. Strong normativists are skeptical of the demarcation project, think facts and values cannot be disentangled, and hold that socioeconomic conditions unavoidably influence how pathology is understood. The new health concepts debate should be framed as one between weak and strong normativists, and it concerns how we should respond to the current developments in health care. (shrink)