Online research in philosophy

This paper argues that some of the misunderstandings surrounding the meaning and function of the concept of human dignity in bioethics arise from a lack of distinction between two different roles that this notion plays: one as an overarching policy principle, and the other as a moral standard of patient care. While the former is a very general concept which fulfils a foundational and a guiding role of the normative framework governing biomedical issues, the latter reflects a much more concrete (...) and context-specific understanding of the patient as a “person”. The importance of dignity as a policy principle will be described by appealing to the distinction between principles and rules as developed by some legal philosophers. The value of dignity as a standard of patient care will be illustrated with the help of concrete examples and by drawing on the taxonomies of dignity proposed by Jonathan Mann and other scholars. The overall scope of the article is to highlight this double and complementary role of human dignity in bioethics. (shrink)

Although bedbug infestation is not a new public health problem, it is one that is becoming more alarming among healthcare professionals, public health officials, and ethicists given the magnitude of patients who may be denied treatment, or who are unable to access treatment, especially those underserved populations living in low income housing. Efforts to quarantine and eradicate Cimicidae have been and should be made, but such efforts require costly interventions. The alternative, however, can further exacerbate the already growing problems of (...) injustice, i.e., unfair treatment of patients, inaccessibility of needed resources. In the following paper, I examine the ramifications of denying access to medical care, among other healthcare justice dilemmas surrounding bedbug infestations. I also explore the value of health, and how healthcare professionals and public officials often feel as though bedbugs are not a priority because they, themselves, are not diseases, regardless of the fact they cause physical and mental problems that affect a person’s health. I propose recommendations for improving the health and well-being of those vulnerable populations who are facing a difficult and growing public health problem that is currently being ignored in medical and public health ethics literature, regardless of increased media attention and unusual habitats of localized infestations, e.g., Statue of Liberty, New York City. (shrink)

There is no lack of criticisms frequently levelled against the international pharmaceutical industry (Big Pharma): excessive profits, dubious or even dishonest practices, exploiting the sick and selective use of research data. Neither is there a shortage of examples used to support such opinions. A recent book by Brody (Hooked: Ethics, the Medical Profession and the Pharmaceutical Industry, 2008 ) provides a précis of the main areas of criticism, adopting a twofold strategy: (1) An assumption that the special nature and human (...) need for pharmaceutical medicines requires that such products should not be treated like other commodities and (2) A multilevel descriptive approach that facilitates an ethical analysis of relationships and practices. At the same time, Brody is fully aware of the nature of the fundamental dilemma: the apparent addiction to (and denial of) the widespread availability of gifts and financial support for conferences etc., but recognises that ‘Remove the industry and its products, and a considerable portion of scientific medicine’s power to help the patient vanishes’ (Brody 2008 , p. 5). The paper explores some of the relevant issues, and argues that despite the identified shortcomings and a need for rigorous and perhaps enhanced regulation, and realistic price control, the commercially competitive pharmaceutical industry remains the best option for developing safer and more effective medicinal treatments. At the same time, adoption of a broader ethical basis for the industry’s activities, such as a triple bottom line policy , would register an important move in the right direction and go some way toward answering critics. (shrink)

In France, bioethics norms have emerged in close interaction with medical practices. The first bioethics laws were adopted in 1994, with provisions for updates in 2004 and most recently, in 2011. As in other countries, bioethics laws indirectly refer to certain fundamental values. The purpose of this paper is threefold. First, I shall briefly describe the construction of the French bioethics laws and the values they are meant to protect. Secondly, I will show that the practice of clinical ethics, as (...) reported in a few studies on ART, living organ donation and PGD, challenge the role attributed to doctors as “gatekeepers” of those fundamental values. Thirdly, I will suggest that the quality of medical practices would improve if the law focused on strengthening the tacit pact between doctors and patients, rather than putting doctors in charge of enforcing societal values. Doctors, for their part, would limit their role to what they can do best: provide sufficient patient support and safe care. Against those who argue that we should dispense with bioethics laws altogether, I hold that the laws are useful in order to limit the development of abusive practices. However, a new legislative approach should be adopted which would a positive presumption in favor of patients’ requests. (shrink)

One of the key roles of the English National Institute for Health and Clinical Excellence (NICE) is technology appraisal. This essentially involves evaluating the cost effectiveness of pharmaceutical products and other technologies for use within the National Health Service. Based on a content analysis of key documents which shed light on the nature of appraisals, this paper draws attention to the multiple layers of uncertainty and complexity which are latent within the appraisal process, and the often socially constructed mechanisms for (...) tackling these. Epistemic assumptions, bounded rationality and more explicitly relational forms of managing knowledge are applied to this end. These findings are discussed in the context of the literature highlighting the inherently social process of regulation. A framework is developed which posits the various forms of uncertainty, and responses to these, as potential conduits of regulatory bias—in need of further research. That NICE’s authority is itself regulated by other actors within the regulatory regime, particularly the pharmaceutical industry, exposes it to the threat of regulatory capture. Following Lehoux, it is concluded that a more transparent and reflexive format for technological appraisals is necessary. This would enable a more robust, defensible form of decision-making and moreover enable NICE to preserve its legitimacy in the midst of pressures which threaten this. (shrink)

A recent study by Castellani et al. (JAMA 302(23):2573–2579, 2009 ) describes the population-level effects of the choices of individuals who underwent molecular carrier screening for cystic fibrosis (CF) in Veneto, in the northeastern part of Italy, between 1993 and 2007. We discuss some of the ethical issues raised by the policies and individual choices that are the subject of this study. In particular, (1) we discuss the ethical issues raised by the acquisition of genetic information through antenatal carrier testing; (...) (2) we consider whether by choosing to procreate naturally these couples can harm the resulting child and/or other members of society, and what the moral implications of such harm would be; (3) we consider whether by choosing to avoid natural procreation carrier couples can harm current or future individuals affected by cystic fibrosis; (4) we discuss whether programs that make carrier testing available can be considered eugenic programs. (shrink)

This article presents a view of bioethics in the Spanish context. We may identify several features common to Mediterranean countries because of their relatively similar social organisation. Each country has its own distinguishing features but we would point two aspects which are of particular interest¨: the Mediterranean view of autonomy and the importance of Catholicism in Mediterranean culture. The Spanish experience on bioethics field has been marked by these elements, trying to build a civic ethics alternative, with the law as (...) an important support. So, Spanish bioethics has been developed in two parallel levels: in the academic and policy maker field (University and Parliament) and in clinical practice (hospitals and healthcare ethics committees), with different paces and methods. One of the most important changes in the paternalistic mentality has been promoted through the recognition by law of the patient’s rights and also through the new generation of citizens, clearly aware on the exercise of autonomy. Now, the healthcare professionals have a new challenge: adapt their practice to this new paradigm. (shrink)

In this paper, I will argue that the current discussions about regulating certain activities concerning the pharmaceutical industry do miss a crucial point. The Pharmaceutical Industry is a story of success, providing a wealth of new discoveries and applied technologies, which have greatly enhanced our lives. The current call for strict regulation of the Pharmaceutical Industry makes the unwarranted assumption that such regulation will not disturb the mechanisms of the Industry’s success. I will claim that a centralised regulation profoundly transforms (...) the direction of travel. I will also claim that the role of the executive in bypassing regulations creates a parallel industry of subsidiary regulations to counter such bypassing. The predictable consequence is the increasing role of central regulatory control and the progressive slowing down of the success of the Pharmaceutical Industry leading towards an undesirable mediocrity. The conclusion I wish to advance is that our choices are not limited to ‘a wild open market’ and ‘a regulated open market’ scenarios, and the strategy to avoid a robustly regulated but mediocre Pharmaceutical Industry may involve ‘non-open market scenarios’ which have so far been absent from the alternatives discussed. (shrink)

This paper reflects on the presumption that there are distinct ethical differences between the supposedly ‘Anglo-Saxon liberal’ and ‘Latin (Southern European) paternalist’ ethical traditions. The predominance of the bioethical paradigm (principalism) is measured by a comparative analysis of regional moral opinion reflected in nation-state health laws. By looking at the way the ethico-legal concept figures into various national ordinances, we attempt to ascertain the extent and nature of variation (if any) between localities by exploring the understanding and application of principalism’s (...) keystone: patient autonomy. (shrink)

This article presents the results of a study that investigates the way in which carriers of a mutation on the BRCA1 or the BRCA2 gene, associated with a high risk of breast and ovarian cancer, make their reproductive decisions. Using semi-structured interviews, the study explored the way in which these persons reflected on the acceptability of taking the risk of transmitting this mutation to the next generation, the arguments they used in favor or against taking that risk, and in the (...) light of these arguments, their opinion on the acceptability of preimplantation genetic diagnosis (PGD) as a reproductive option. The findings suggest that when carriers are planning to have a(nother) child, they are mainly concerned by the risk of transmitting ‘much more than a gene’: essentially painful experiences not only with respect to health, such as undergoing cancer surveillance or combatting one’s own illness, but also with regards to family life, such as witnessing the illness and death of a close relative, encountering difficulties in finding a partner or reconsidering one’s plans to have a family. As for opinions concerning the acceptability of PGD as a reproductive option, opinions about personal recourse were varied but all expressed the understanding that PGD should be made available to those persons who consider it their best option. (shrink)

In the context of health care the aim of the article is to bring another meaning to the concept “need” that goes beyond the human activity; the drive to satisfy needs. Another meaning incorporates an ethical and existential nature of life phenomena. An example from empirical research on living with a chronic disease as seen from the patient’s point of view provides the basis for arguing another meaning of the concept “need”. The meanings and nuances in the life phenomena of (...) hope, doubt and life courage are exemplified in qualitative interviews with chronic sufferers. A combination of empirical research and Danish life philosophy. Research has shown that the interaction between the professional health care provider and the patient and family may lead to a more or less unconscious and inappropriate administration of power. Research also indicates that by overlooking or ignoring the existential qualities in human life and suffering, the professional health care provider may deprive the patient and family of their room for action. To add a deeper understanding of the existential meaning of being a person with an illness, the article shows the different human dimensions concerning life phenomena and needs. Developing sensitive, situation-specific attention offers a response to the challenge faced by health care providers in collaboration with the patient: How can we open our eyes to the most significant features of the situation which arise on the onset of illness. (shrink)

The purpose of this paper is to provide a normative model for the assessment of the exercise of power by Big Pharma. By drawing on the work of Steven Lukes, it will be argued that while Big Pharma is overtly highly regulated, so that its power is indeed restricted in the interests of patients and the general public, the industry is still able to exercise what Lukes describes as a third dimension of power. This entails concealing the conflicts of interest (...) and grievances that Big Pharma may have with the health care system, physicians and patients, crucially through rhetorical engagements with Patient Advocacy Groups that seek to shape public opinion, and also by marginalising certain groups, excluding them from debates over health care resource allocation. Three issues will be examined: the construction of a conception of the patient as expert patient or consumer; the phenomenon of disease mongering; the suppression or distortion of debates over resource allocation. (shrink)

Substantial research efforts have been devoted to developing a cure for autism, but some advocates of people with autism claim that these efforts are misguided and even harmful. They claim that there is nothing wrong with people with autism, so there is nothing to cure. Others argue that autism is a serious and debilitating disorder and that a cure for autism would be a wonderful medical breakthrough. Our goal in this essay is to evaluate what assumptions underlie each of these (...) positions. We evaluate the arguments made on each side, reject those that are implausible and then highlight the key assumptions of those that remain. (shrink)

Is there any ethical justification for limiting the reproductive autonomy and not make assisted reproductive technologies available to certain prospective parents? We present and discuss the results of an interdisciplinary clinical ethics study concerning access to assisted reproductive technologies (ART) in situations which are considered as ethically problematic in France (overage or sick parents, surrogate motherhood). The study focused on the arguments that people in these situations put forward when requesting access to ART. It shows that requester’s arguments are based (...) on sound ethical values, and that their legitimacy is at least as strong as that of those used by doctors to question access to ART. Results reveal that the three implicit normative arguments that founded the law in 1994, which are still in force after the bioethics law revision in July 2011—the welfare of the child, the illegitimacy of a “right to a child,” and the defense of the so called “social order”—are challenged on several grounds by requesters as reasons for limiting their reproductive autonomy. Although these results are limited to exceptional situations, they are of special interest insofar as they give voice to the requesters’ own ethical concerns in the ongoing political debate over access to ART. (shrink)

Professional medical ethics demands of health care professionals in addition to specific duties and rules of conduct that they embody a responsible and trustworthy personality. In the public discussion, different concepts are suggested to describe the desired implied attitude of physicians. In a sequel of three articles, a set of three of these concepts is presented in an interpretation that is meant to characterise the morally emotional part of this attitude: “empathy”, “compassion” and “care”. In the first article of the (...) series, “empathy” has been developed as a mainly cognitive and morally neutral capacity of understanding. In this article, the emotional and virtuous core of the desired professional attitude—compassion—is elaborated. Compassion is distinguished from sympathy, empathy and pity. Several problems of compassion as a spontaneous, warm emotion for being a professional virtue are discussed: especially questions of over-demand, of justice and of concerns because of a possible threat to the patient’s dignity and autonomy. An interpretation of compassion as processed and learned professional attitude, that founds dignity on the general idea of man as a sentient being and on solidarity, not on his independence and capacities, is developed. It is meant to rule out the possible side effects and to make compassion as a professional attitude and as professional virtue attractive, teachable and acquirable. In order to reach the adequate warmth and closeness for the particular physician-patient-relation, professional compassion has to be combined with the capacity of empathy. If appropriate, the combination of both empathy and compassion as “empathic compassion” can demand a much warmer attitude towards the patient than each of the elements alone, or the simple addition of them can provide. The concept of “care” that will be discussed in a forthcoming article of this sequel is a missing necessary part to describe the active potential of the desired moral attitude of the physician more completely. The reconstruction of the desired professional attitude in terms of “empathic compassionate care” is certainly not the only possible description, but it is a detailed proposal in order to give an impulse for the discussion about the inner tacit values and the meaning of medicine and clinical healthcare professions. (shrink)

In professional medical ethics, the physician traditionally is obliged to fulfil specific duties as well as to embody a responsible and trustworthy personality. In the public discussion, different concepts are suggested to describe the desired moral attitude of physicians. In a series of three articles, three of the discussed concepts are presented in an interpretation that is meant to characterise the morally emotional part of this attitude: “empathy”, “compassion” and “care”. In the first article of the series, “empathy” has been (...) developed as a mainly cognitive and morally neutral capacity of understanding. In the second article, the emotional and virtuous core of the desired professional attitude—compassion—has been presented. Compassion as a professional attitude has been distinguished from a spontaneous feeling of compassion, and has been related to a general idea of man as vulnerable and solidary being. Thus, the dignity of the patient is safeguarded in spite of the asymmetry of compassion. In this article, the third concept of the triad—“care”—is presented. Care is conceived as an attitude as well as an activity which can be directed to different objects: if it is directed to another sentient being, it is regarded as intrinsically morally valuable; implying (1) the acceptance of being addressed, (2) a benevolent inclination to help and to foster, and (3) activity to realize this. There are different forms of benevolence that can underlie caring. With regard to the professional physician’s ethos, the attitude of empathic compassion as developed in the two previous articles is proposed to be the adequate underlying attitude of care which demands the right balance between closeness and professionalism and the right form of attention to the person of the patient. ‘Empathic compassionate care’ does not, however, describe the whole of the desired attitude of a physician, but focuses on the morally-emotive aspects. In order to get also the cognitive and practical aspects of biomedicine into the picture, ‘empathic compassionate care’ has to be combined with an attitude of responsibility that is more directed to decision-making and outcome than a caring attitude alone can be. The reconstruction of the desired professional attitude in terms of “empathic compassionate care” and “responsibility” is certainly not the only possible description, but it is a detailed proposal in order to give an impulse for the discussion about the inner tacit values and the meaning of medicine and clinical healthcare professions. (shrink)

The aim of this article is to explore bodily changes following weight loss surgery. Our empirical material is based on individual interviews with 22 Norwegian women. To further analyze their experiences, we build primarily on the phenomenologist Drew Leder`s distinction between bodily dis-appearance and dys-appearance. Additionally, our analysis is inspired by Simone de Beauvoir, Merleau-Ponty and Julia Kristeva. Although these scholars have not directed their attention to obesity operations, they occupy a prime framework for shedding light on different dimensions of (...) bodily change. In doing so, we were able to identify two main themes: The felt “inner” body versus the visible “surface” body and the “old” body versus the “new” body. In different, though interconnected ways, these main themes encompass tensions between changes the women experienced as contributing to a more “normal” and active life, feeling more accepted, and changes that generated ambivalence. In particular, their skin became increasingly problematic because it did not “shrink” like the rest of the body. On the contrary, it became looser and looser. Moreover, badsmelling folds of skin that wobbled, sweated and chafed at the smallest movement, aprons of fat hanging in front of their stomachs, batwing arms, thick flabby thighs and sagging breasts were described as a huge contrast to the positive response they received to their changed body shape when they were out and about with their clothes on. At the same time, they expressed ambivalence with regards to removing the excess skin by means of plastic surgery. Through their own and other women`s experiences they learned removing the excess skin by means of surgery could be a double-edged sword. By illuminating the experiences of the ones undergoing such changes our article offers new insight in a scholarly debate predominated by medical research documenting the positive outcomes of weight loss surgery. (shrink)

The principle of proportionality is used in many different contexts. Some of these uses and contexts are first briefly indicated. This paper focusses on the use of this principle as a moral principle. I argue that under certain conditions the principle of proportionality is helpful as a guide in decision-making. But it needs to be clarified and to be used with some flexibility as a context-dependent principle. Several interpretations of the principle are distinguished, using three conditions as a starting point: (...) importance of objective, relevance of means, and most favourable option. The principle is then tested against an example, which suggests that a fourth condition, focusing on non-excessiveness, needs to be added. I will distinguish between three main interpretations of the principle, some primarily with uses in research ethics, others with uses in other areas of bioethics, for instance in comparisons of therapeutic means and ends. The relations between the principle of proportionality and the precautionary principle are explored in the following section. It is concluded that the principles are different and may even clash. In the next section the principle of proportionality is applied to some medical examples drawn from research ethics and bioethics. In concluding, the status of the principle of proportionality as a moral principle is discussed. What has been achieved so far and what remains to be done is finally summarized. (shrink)

The objective of this paper is to understand from a sociological perspective how the moral question of euthanasia, framed as the “right to die”, emerges and is dealt with in society. It takes France and Germany as case studies, two countries in which euthanasia is prohibited and which have similar legislation on the issue. I presuppose that, and explore how, each society has its own specificities in terms of practical, social and political norms that affect the ways in which they (...) deal with these issues. The paper thus seeks to understand how requests for the “right to die” emerge in each society, through both the debate (analysis of daily newspapers, medical and philosophical literature, legal texts) and the practices (ethnographic work in three French and two German hospitals) that elucidate the phenomenon. It does so, however, without attempting to solve the moral question of euthanasia. In spite of the differences observed between these two countries, the central issue at stake in their respective debates is the question of the individual’s autonomy to choose the conditions in which he or she wishes to die; these conditions depend, amongst others, on the doctor-patient relationship, the organisation of end-of-life care in hospital settings, and more generally, on the way autonomy is defined and handled in the public debate. (shrink)

Lying is a common phenomenon amongst human beings. It seems to play a role in making social interactions run more smoothly. Too much honesty can be regarded as impolite or downright rude. Remarkably, lying is not a common phenomenon amongst normally intelligent human beings who are on the autism spectrum. They appear to be ‘attractively morally innocent’ and seem to have an above average moral conscientious objection against deception. In this paper, the behavior of persons with autism with regard to (...) deception and truthfulness will be discussed in the light of two different ethical theories, illustrated by fragments from autobiographies of persons with autism. A systemizing ‘Kantian’ and an empathizing ‘ethics of care’ perspective reveal insights on high-functioning autism, truthfulness and moral behavior. Both perspectives are problematic from the point of view of a moral agent with autism. High-functioning persons with autism are, generally speaking, strong systemizes and weak empathizers. Particularly, they lack ‘cognitive empathy’ which would allow them to understand the position of the other person. Instead, some tend to invent a set of rules that makes their behavior compatible with the expectations of others. From a Kantian point of view, the autistic tendency to always tell the truth appears praiseworthy and should not be changed, though it creates problems in the social life of persons with autism. From a care ethics perspective, on the other hand, a way should be found to allow the high-functioning persons with autism to respect the feelings and needs of other persons as sometimes overruling the duty of truthfulness. We suggest this may even entail ‘morally educating’ children and adolescents with autism to become socially skilled empathic ‘liars’. (shrink)

Empowerment and user participation represents an ideal of power with a strong position in the health sector. In this article we use text analysis to investigate notions of power in a program plan for health workers focusing on empowerment. Issues addressed include: How are relationships of power between users and helpers described in the program plan? Which notions of user participation are embedded in the plan? The analysis is based on Foucault’s idea that power which is made subject to attempts (...) of redistribution will re-emerge in other forms. How this happens, and with what consequences, is our analytical concern. The analysis is contrasted with ‘snapshots’ from everyday life in a nursing home. The program plan communicates empowerment as a democracy-building instrument that the users need. It is a tool for providing expert assistance to the user’s self-help. User participation is made into a tool which is external to the user him-/herself. Furthermore, the analysis shows that the plan’s image of empowerment presupposes an ‘élite user’ able to articulate personal needs and desires. This is not very applicable to the most vulnerable user groups, who thereby may end up in an even weaker position. By way of conclusion, we argue that an exchange of undesirable dominating paternalism for a desirable empowerment will not abolish power, but may result in more covert and subtle forms of power that are less open to criticism. The paper offers insights that will facilitate reflections on the premises for practising empowerment-oriented health care. (shrink)

Analogously to Kuhn’s and Hanson’s understanding of observation as theory-impregnated, we try to test the hypothesis that observation and interpretation might also be value-impregnated. We use a written examination task for medical students who were asked to read and interpret a text where the authors provide arguments pro et contra euthanasia. Afterwards the students were asked to provide their own reflected opinion on the issue. We found that medical students who were against and indecisive provided interpretations of the text which (...) accorded with their own reflected opinions ( P = 0.02), indicating that their interpretations were influenced by their own values. When including those who were pro euthanasia, the association was no longer significant. Although the present investigation was a small pilot-study, we obtained partial support for our hypothesis and have adjusted it to read as follows: observations and interpretations might be value-impregnated for respondents who have rather strong value-based attitudes. We think the adjusted hypothesis deserves to be further examined. (shrink)

The aim of this study is to illuminate the significance of the long-term influence of bodily changes on the perception of self after stroke by means of narrative interviews with 23 stroke survivors. A phenomenological-hermeneutic approach inspired by the philosophy of Merleau-Ponty and Ricoeur is the methodological framework. Zahavi’s understanding of the embodied self and Leder’s concept of dys-appearance along with earlier research on identity guide the comprehensive understanding of the theme. The meaning of bodily changes after stroke can be (...) understood as living with an altered perception of self. Stroke survivors perceive their bodies as fragile, unfamiliar and unreliable and tend to objectify them. The weak and discomforting body that ‘cannot’ demands constant, comprehensive awareness to keep itself in play. These long-term and often permanent consequences of bodily weakness may turn stroke survivors’ intentionality inwards, away from external activities and projects and relationships with others. Negative judgements from others are added to lost roles and positions and threaten the vulnerable self. Stroke survivors try to regain familiarity with their body by their life-long project of testing its boundaries. Mastering important tasks helps them strengthen their self-concept. Health care workers should be aware of the embodied self and engage in long-term dialogues with stroke survivors to strengthen positive perceptions of body and self. More research is needed to understand destructive post-stroke phenomena such as fatigue and pain and to find effective methods to help stroke survivors regain wholeness of body and self. (shrink)

Even if somebody considers inappropriate any geographic adjective for Bioethics, nevertheless we think that there are some specific features of “Mediterranean” Bioethics that could distinguish it from a “Northern-European and Northern-American” one. First of all we must consider that medical ethics was born and grew in Mediterranean area. First by the thought of great Greek philosophers as Aristotle (that analyse what ethics is), then by Hippocrates, the “father” of medical ethics. The ethical pattern of Aristotle was based on “virtues” and (...) their practice. In this perspective we can already note a strong difference with actual North-European or American principialist ethics. But a second consideration concerns the role that great Mediterranean religions (Judaism, Christianity and Islam) had in the construction of the ethical thought especially on the matter of life and its respect. So, in our pluralistic and multicultural society is absolutely necessary to rescue an approach that considers both “lungs” of ethical thought (Mediterranean and Northern one) and highlights the role that Mediterranean Ethics still has in this way. (shrink)

On the basis of extensive research on the relationship between physical activity, exercise and health, as well as strong support from policymakers and practitioners, the “Exercise is Medicine” initiative has become something of a linchpin in the agenda for modern healthcare reform and reflects a broader acceptance that the philosophy of health politics must shift from social engineering to performativity. However, in spite of the avowed commitment to encouraging individuals to take on a more reflexive relation to their health, it (...) remains unclear as to whether an initiative such as this is, unambiguously, a good thing. In this paper, a number of cautionary remarks are made with respect to “Exercise is Medicine” in principle as well as in practice. Firstly, it is argued that equating exercise with medicine is to equate it with a definition of and relation to the body to which it is not entirely akin. And secondly, it is argued that any proposed alignment of the fitness and healthcare industries needs further critical examination, a realigning of interests, and a thorough reconsideration of their suitability of fit. (shrink)

This article compares two different bodies of theories concerning the role of the genome in life processes. The first group of theories can be indicated as referring to the gene-centric paradigm. Dominated by an informational myth and a mechanistic Cartesian body/mind and form/substance dualism, this considers the genome as an ensemble of discrete units of information governing human body and behavior, and remains hegemonic in life sciences and in the public imagination. The second body of theories employs the principle of (...) the extraordinary plasticity of the (body-)organism and emphasizes the value of the (body-)organism-environment mutual interchange, known as ‘the epigenetic approach’. This approach is outlined, showing a gradual, paradigmatic shift from the genecentric towards an epigenetic approach can be observed in the ‘scientific landscape’ over the last 20 years. The article concludes by formulating the argument that this ‘epigenetic turn’ in life sciences has some important implication for renewing epistemological basis of social sciences. (shrink)

There is a growing trend in policy making of holding people responsible for their lifestyle-based diseases. This has sparked a heated debate on whether people are responsible for these illnesses, which has now come to an impasse. In this paper, I present a psychological model that explains why different views on people’s responsibility for their health exist and how we can reach a resolution of the disagreement. My conclusion is that policymakers should not perceive people as responsible while health care (...) personnel should take the opposing view. (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)

The paper suggests an application of the precautionary principle to the use of genetics in psychiatry focusing on scientific uncertainty. Different levels of uncertainty are taken into consideration—from the acknowledgement that the genetic paradigm is only one of the possible ways to explain psychiatric disorders, via the difficulties related to the diagnostic path and genetic methods, to the value of the results of studies carried out in this field. Considering those uncertainties, some measures for the use of genetics in psychiatry (...) are suggested. Some of those measures are related to the conceptual limits of the genetic paradigm; others are related to present knowledge and should be re-evaluated. (shrink)

Body integrity identity disorder (BIID), formerly also known as apotemnophilia, is characterized by a desire for amputation of a healthy limb and is claimed to straddle or to even blur the boundary between psychiatry and neurology. The neurological line of approach, however, is a recent one, and is accompanied or preceded by psychodynamical, behavioural, philosophical, and psychiatric approaches and hypotheses. Next to its confusing history in which the disorder itself has no fixed identity and could not be classified under a (...) specific discipline, its sexual component has been an issue of unclarity and controversy, and its assessment a criterion for distinguishing BIID from apotemnophilia, a paraphilia. Scholars referring to the lived body—a phenomenon primarily discussed in the phenomenological tradition in philosophy—seem willing to exclude the sexual component as inessential, whereas other authors notice important similarities with gender identity disorder or transsexualism, and thus precisely focus attention on the sexual component. This contribution outlines the history of BIID highlighting the vicissitudes of its sexual component, and questions the justification for distinguishing BIID from apotemnophilia and thus for omitting the sexual component as essential. Second, we explain a hardly discussed concept from Maurice Merleau-Ponty’s Phenomenology of Perception ( 1945a ), the sexual schema , and investigate how the sexual schema could function in interaction with the body image in an interpretation of BIID which starts from the lived body while giving the sexual component its due. (shrink)

Recent discussions surrounding the conceptualising of disability has resulted in a stalemate between British sociologists and philosophers. The stagnation of theorizing that has occurred threatens not only academic pursuits and the advancement of theoretical interpretations within the Disability Studies community, but also how we educate and advocate politically, legally, and socially. More pointedly, many activists and theorists in the UK appear to believe the British social model is the only effective means of understanding and advocating on behalf of people with (...) disabilities. This model, largely reliant upon materialist research traditions, contends that disability is a form of social oppression and hence, is a phenomenon that should be conceptualised in social terms. Individual properties such as impairments are disregarded as they are viewed to be unimportant in the analysis of the social causes of disability. Concurrently, many bioethicists and philosophers have embraced what Tom Shakespeare has classified as an ‘Interactional Approach’ to disability—that “the experience of a disabled person results from the relationship between factors intrinsic to the individual, and the extrinsic factors arising from the wider context in which she finds herself”. I intend to demonstrate that the benefits of the British social model are now outweighed by its burdens. I suggest, as Jerome Bickenbach has, that while it may be somewhat churlish to critique the social model in light of its political success, taken literally, it implies that people with disabilities require no additional health resources by virtue of their impairments. Despite the eloquent arguments that have preceded me by interactional theorists, none have been accepted as evidence of fallacious reasoning by British social model theorists. This article is an attempt to clarify why it is that the types of arguments British social model theorists have been offering are misguided. I suggest that the British social model, unlike an interactional approach, is unable to provide a realistic account of the experience of disability, and subsequently, unable to be properly utilized to ensure justice for people with disabilities. (shrink)

This study examined health professionals’ (HPs) experience, beliefs and attitudes towards brain death (BD) and two types of donation after circulatory death (DCD)—controlled and uncontrolled DCD. Five hundred and eighty-seven HPs likely to be involved in the process of organ procurement were interviewed in 14 hospitals with transplant programs in France, Spain and the US. Three potential donation scenarios—BD, uncontrolled DCD and controlled DCD—were presented to study subjects during individual face-to-face interviews. Our study has two main findings: (1) In the (...) context of organ procurement, HPs believe that BD is a more reliable standard for determining death than circulatory death, and (2) While the vast majority of HPs consider it morally acceptable to retrieve organs from brain-dead donors, retrieving organs from DCD patients is much more controversial. We offer the following possible explanations. DCD introduces new conditions that deviate from standard medical practice, allow procurement of organs when donors’ loss of circulatory function could be reversed, and raises questions about “death” as a unified concept. Our results suggest that, for many HPs, these concerns seem related in part to the fact that a rigorous brain examination is neither clinically performed nor legally required in DCD. Their discomfort could also come from a belief that irreversible loss of circulatory function has not been adequately demonstrated. If DCD protocols are to achieve their full potential for increasing organ supply, the sources of HPs’ discomfort must be further identified and addressed. (shrink)

Empirical research has proven the influence exerted by the medical industry on physicians’ decision-making. Physicians are the gatekeepers who determine how money is spent within the healthcare system. Hence, they are the target group of powerful lobbies in the field, i.e. the manufacturers of medical devices and the pharmaceutical industry. As clinical research lies in the hands of physicians, they play an exclusive and central role in launching new medical products. There are many ethical problems involved here: physicians may develop (...) a mindset of entitlement; biased decisions may put patients at risk; academic interests and research activities will no longer be free if they are influenced considerably by financial incentives; fair resource allocation may be restricted. An aspect that has been neglected so far is the administrators’ involvement as they not rarely expect physicians to acquire external financial resources from industry as benefits often lie with the institutions. To “protect” physicians from undue sway may be in the best interest of patients in order to guarantee a fair allocation of resources and to prevent the application of technologies (and medications) that would not have been used according to current standards of care. The latter may and obviously does put patients at risk. On the other hand, medico-industrial relations are of great importance. A considerable part of medical progress is driven by private industry. Yet, any co-operation between those who care for patients and industry ultimately has to serve the patient. Hence, strong policies to guide conduct are sorely needed. The following points are held to be pivotal in order to secure ethical conduct: (1) professional codes of ethics; (2) a stronger academic attitude amongst medical staff, (3) rules of transparency for medico-industrial relations including online disclosure and limiting scale of payments, (4) establishing rules (and laws) that ban unethical conduct and mandate vigorous surveillance of adherence to guidelines. (shrink)

Medical practitioners owe much of the significant progress made in the diagnosis and treatment of disease to industrial research. Hence, co-operation between providers of medical services, most notably medical practitioners, and the pharmaceutical industry is in the best interest of patients. Yet, empirical evidence shows how well-directed influence exerted by the pharmaceutical industry impacts physicians’ decision-making. Profit-motivated inducement by the pharmaceutical industry may expose patients to considerable risks. Against what many think to be based on overwhelming evidence, Joao Calinas-Correia takes (...) the view that the criticism levelled at the pharmaceutical industry as well as the call for transparency in the relationships between physicians and the industry are exaggerated. In his polemic he praises “Big Pharma” as a success and espouses the view that the undesired consequences of its activities are allegedly inherent in the underlying market environment shaped by politics. Moreover, he believes that the proposals made to control and eliminate such undesired effects will lead to mediocrity. Astonishingly, his polemic reaches out to contest the appropriateness of setting rules at all—even if being set by a democratic process. Calinas-Correia’s assertions are based on the wrong premises. They fail to recognize that today individual civil rights and liberties often enough do not have to be defended against encroachments by governmental authorities. Rather, it is incumbent on the state to create rules designed to defend the individual against infringements by overly powerful non-governmental institutions, in our case the medical-industrial complex. Given the power exercised by physicians and the special nature of their role in public health, clear-cut rules have to be enacted and implemented with respect to their relationship to Big Pharma. (shrink)

In this paper phenomenological descriptions of the experiential structures of suicidality and of self-determined behaviour are given; an understanding of the possible scopes and forms of lived self-determination in suicidal mental life is offered. Two possible limits of lived self-determination are described: suicide is always experienced as minimally self-determined, because it is the last active and effective behaviour, even in blackest despair; suicide can never be experienced as fully self-determined, even if valued as the authentic thing to do, because no (...) retrospective re-evaluation from some future vantage is possible. The phenomenological descriptions of the possible scope of lived self-determination in suicidality, presented in this paper, should prove to be extremely helpful in three different fields of interest: (a) ethical debates regarding the pros and cons of autonomous or heteronomous suicide; (b) clinical day-to-day practice with respect to treating suicidal people; (c) people who suffered a suicidal crisis, attempted suicide or lost loved ones through suicides. (155 words). (shrink)

Prenatal care and the practice of prenatal genetic testing are about to be changed fundamentally. Due to several ground-breaking technological developments prenatal screening and diagnosis (PND) will soon be offered earlier in gestation, with less procedure-related risks and for a profoundly enlarged variety of targets. In this paper it is argued that the existing normative framework for prenatal screening and diagnosis cannot answer adequately to these new developments. In concentrating on issues of informed consent and the reproductive autonomy of the (...) pregnant women the ethical debate misses problems related to the clinical pathway as a whole and to implicit normative attributions to clinical actions or the function of health care professionals. If, however, ethical debate would focus on the clinical context and on the ends of PND to a larger extent, it would be able to provide a more comprehensive analysis of the ethical challenges especially of the new technologies in order to be more adequately prepared for their implementation. (shrink)

Based on Lucy Grealy’s memoir, Autobiography of a Face , this article explores the relationship between gender and illness in our culture, as well as the paradox of “intimacy without intimacy” in the clinical encounter. Included is a brief review of how authenticity, vulnerability, and mutual recognition of suffering can foster the kind of empathic doctor-patient relationship that Lucy Grealy sorely needed, but never received. As she says at the end of her memoir, “All those years I’d handed my ugliness (...) over to people, and seen only the different ways it was reflected back to me.”. (shrink)

Respect for autonomy is typically considered a key reason for allowing physician assisted suicide and euthanasia. However, several recent papers have claimed this to be grounded in a misconception of the normative relevance of autonomy. It has been argued that autonomy is properly conceived of as a value, and that this makes assisted suicide as well as euthanasia wrong, since they destroy the autonomy of the patient. This paper evaluates this line of reasoning by investigating the conception of valuable autonomy. (...) Starting off from the current debate in end-of-life care, two different interpretations of how autonomy is valuable is discussed. According to one interpretation, autonomy is a personal prudential value, which may provide a reason why euthanasia and assisted suicide might be against a patient’s best interests. According to a second interpretation, inspired by Kantian ethics, being autonomous is unconditionally valuable, which may imply a duty to preserve autonomy. We argue that both lines of reasoning have limitations when it comes to situations relevant for end-of life care. It is concluded that neither way of reasoning can be used to show that assisted suicide or euthanasia always is impermissible. (shrink)

Bioethics laws in France have just undergone a revision process. The bioethics debate is often cast in terms of ethical principles and norms resisting emerging social and technological practices. This leads to the expression of confrontational attitudes based on widely differing interpretations of the same principles and values, and ultimately results in a deadlock. In this paper I would like to argue that focusing on values, as opposed to norms and principles, provides an interesting perspective on the evolution of norms. (...) As Joseph Raz has convincingly argued, “life-building” values and practices are closely intertwined. Precisely because values have a more indeterminate meaning than norms, they can be cited as reasons for action by concerned stakeholders, and thus can help us understand how controversial practices, e.g. surrogate motherhood, can be justified. Finally, norms evolve when the interpretations of the relevant values shift and cause a change in the presumptions implicit in the norms. Thus, norms are not a prerequisite of the ethical solution of practical dilemmas, but rather the outcome of the decision-making process itself. Struggling to reach the right decision in controversial clinical ethics situations indirectly causes social and moral values to change and principles to be understood differently. (shrink)

The word ‘dignity’ is used in a variety of ways in bioethics, and this ambiguity has led some to argue that the term must be expunged from the bioethical lexicon. Such a judgment is far too hasty, however. In this article, the various uses of the word are classified into three serviceable categories: intrinsic, attributed, and inflorescent dignity. It is then demonstrated that, logically and linguistically, the attributed and inflorescent meanings of the word presuppose the intrinsic meaning. Thus, one cannot (...) conclude that these meanings are arbitrary and unrelated. This categorization and logical and linguistic analysis helps to unravel what seem to be contradictions in discourse about dignity and bioethics, and provides a hierarchy of meaning that has potential normative implications. (shrink)

This paper seeks to define and delimit the scope of the social responsibilities of health professionals in reference to the concept of a social contract. While drawing on both historical data and current empirical information, this paper will primarily proceed analytically and examine the theoretical feasibility of deriving social responsibilities from the phenomenon of professionalism via the concept of a social contract.

The drive for cost-effective use of medical interventions has advantages, but can also be challenging in the context of end-of-life palliative treatments. A quality-adjusted life-year (QALY) provides a common currency to assess the extent of the benefits gained from a variety of interventions in terms of health-related quality of life and survival for the patient. However, since it is in the nature of end-of-life palliative care that the benefits it brings to its patients are of short duration, it fares poorly (...) under a policy of QALY-maximization. Nevertheless, we argue that the goals of palliative care and QALY are not incompatible, and optimal integration of palliative care into the calculation of QALY may reveal a mechanism to modify considerations of how optimal quality of life can be achieved, even in the face of terminal illness. The use of QALYs in resource allocation means that palliative care will always compete with alternative uses of the same money. More research should be conducted to evaluate choices between palliative care and more aggressive therapies for the terminally ill. However, current limited data show that investing in palliative care makes more sense not only ethically, but also financially. (shrink)

In various documents the view emerges that contemporary biotechnosciences are currently experiencing a scientific revolution: a massive increase of pace, scale and scope. A significant part of the research endeavours involved in this scientific upheaval is devoted to understanding and, if possible, ameliorating humankind: from our genomes up to our bodies and brains. New developments in contemporary technosciences, such as synthetic biology and other genomics and “post-genomics” fields, tend to blur the distinctions between prevention, therapy and enhancement. An important dimension (...) of this development is “biomimesis”: i.e. the tendency of novel technologies and materials to mimic or plagiarize nature on a molecular and microscopic level in order to optimise prospects for the embedding of technological artefacts in natural systems such as human bodies and brains. In this paper, these developments are read and assessed from a psychoanalytical perspective. Three key concepts from psychoanalysis are used to come to terms with what is happening in research laboratories today. After assessing the general profile of the current revolution in this manner, I will focus on a particular case study, a line of research that may serve as exemplification of the vicissitudes of contemporary technosciences, namely viral biomaterials. Viral life forms can be genetically modified (their genomes can be rewritten) in such a manner that they may be inserted in human bodies in order to produce substances at specific sites such as hormones (testosterone), neurotransmitters (dopamine), enzymes (insulin) or bone and muscle tissue. Notably, certain target groups such as top athletes, soldiers or patients suffering from degenerative diseases may become the pioneers serving as research subjects for novel applications. The same technologies can be used for various purposes ranging from therapy up to prevention and enhancement. (shrink)