Le livre que le lecteur tient entre les mains est un bréviaire de l'indifférence à la politique. Ce bréviaire, toutefois, ne vise aucune fin édificatrice, ni prosélyte. Il se contente d'être l'exposé fragmentaire d'un soupçon vague : que la politique ne rend pas heureux. Plutôt qu'y dépenser une énergie que nous n'avons pas, ne vaut-il pas mieux nous tourner vers d'autres horizons? Déambulant le long d'une plage des Pouilles, assis à la terrasse d'un café parisien, ou goûtant, depuis le balcon (...) d'un hôtel, la nuit londonienne, nous n'avons que l'embarras du choix. II suffit qu'une jeune fille croise notre chemin pour que la politique s'évanouisse comme un rêve d'hiver. (shrink)

"Pop'philosophie" : si l'on en croit la morgue méprisante que ce simple mot provoque, il s'agirait du nom d'une étrange maladie. Celle d'une philosophie se prostituant aux industries culturelles ou, pire, aux sirènes du populisme. Avec la pop' philosophie, on assisterait à la ruine de la philosophie tout court, devenue tantôt gadget pédagogique, tantôt tentative pathétique de capitaliser sur le glamour frelaté de la pop culture. Et si c'était faux? Pour Gilles Deleuze, en tout cas, rien n'était plus important que (...) l'invention d'une pop'philosophie qui sauverait la pensée de la correction professorale et de la pontification esthétique. Inventer une pensée véritablement anarchiste, enterrant la philosophie pour l'ouvrir à des devenirs inédits : tel était l'objectif qu'il donna au concept de pop'philosophie. Rien n'était moins simple ni plus ambitieux. Il est temps de comprendre en quoi."--Page 4 of cover. (shrink)

Magic est de ces livres étonnants, bouleversant tout ce que nous croyions savoir sur un sujet. A partir d'une interrogation sur l'apparition du concept de "lien social" chez Rousseau ou Durkheim, Laurent de Sutter propose une surprenante remise en cause du consensus régnant autour de l'idée de lien. Plutôt que de poursuivre l'investigation du côté de la sociologie, il suggère, pour comprendre ce qui nous lie, de regarder du côté d'un droit qui aurait retrouvé celle qui lui a toujours (...) été consubstantielle et que l'on a pourtant tenté de refouler, à savoir sa magie. Que se passerait-il si, en effet, le droit était la dernière manifestation de la magie dans un monde qui croyait pouvoir s'en passer? Telle est la question au coeur de ce bref essai érudit, spectaculaire et fascinant, passant avec une grâce provocante de Montesquieu à Giordano Bruno, des juristes romains à Gabriel Tarde, de Marcel Mauss aux inspirateurs du Code civil, de Giorgio Agamben à Quentin Meillassoux. (shrink)

Wish to die statements are becoming a frequent phenomenon in terminally ill patients. Those confronted by these statments need to understand the complexity of such wishes, so they can respond competently and compassionately to the requests. If misunderstood, the statements can be taken at face-value and the practitioner may not recognise that a patient is in fact experiencing ambivalent feelings at the end of life, or they may misinterpret the expressed wish to die as a sign of clinical depression. Public (...) debate about the morality and ethics of various end-of-life care options has exploded in recent years. However, it has never been sensitive to the finer aspects of clinical reality or the experiences of patients. The Patient's Wish to Die: Research, Ethics, and Palliative Care brings together that reality and the patient's voice, combining them with different research approaches. It presents the best available knowledge and research methodologies about patients' wishes at the end-of-life, together with a series of ethical views and a discussion about the clinical implications for palliative care. The book presents material in an open and unbiased manner whilst remaining sensitive to the spiritual and existential dimensions of dying, and to the different cultural views that provide meaning to the individual. Written by the best specialists and ethics scholars from around the world, including palliative care practitioners and end-of-life scholars from countries where assisted dying practices are legalized and from those where it isn't, The The Patient's Wish to Die: Research, Ethics, and Palliative Care will prove essential reading for all those working or studying in the field of palliative care. (shrink)

Health-care professionals in end-of-life care are frequently confronted with patients who seem to be ‘ambivalent’ about treatment decisions, especially if they express a wish to die. This article investigates this phenomenon by analysing two case stories based on narrative interviews with two patients and their caregivers. First, we argue that a respectful approach to patients requires acknowledging that coexistence of opposing wishes can be part of authentic, multi-layered experiences and moral understandings at the end of life. Second, caregivers need to (...) understand when contradictory statements point to tensions in a patient’s moral experience that require support. Third, caregivers should be careful not to negatively label or even pathologize seemingly contradictory patient statements. (shrink)

As the technology for ectogenesis continues to advance, the ethical implications of such developments should be thoroughly and proactively explored. The possibility of full ectogenesis remains hypothetical at present, and myriad concerns regarding the safety and efficacy of the technology must be evaluated and addressed, while pressing moral considerations should be fully deliberated. However, it is conceivable that the technology may become sufficiently well established in the future and that eventually full ectogenesis might be deemed ethically acceptable as a reproductive (...) alternative to gestation within a human womb under certain circumstances. If the safety and efficacy of full ectogenesis are established, if ethical dilemmas are sufficiently well addressed, and if the technology is offered as a reproductive option to cisgender heterosexual individuals or couples desiring to become parents, there is a moral obligation grounded in social justice to ensure that full ectogenesis be made available to individuals or couples identifying as members of sexual‐ or gender‐minority groups who likewise seek to pursue parenthood. We examine the history of access to current family‐building options, including assisted reproductive technology, surrogacy and adoption, for these populations and conclude that in the absence of robust empirical evidence suggesting an increased risk of harm to children of individuals and couples who identify as members of sexual‐ or gender‐minority groups, equitable access to ectogenesis as a pathway to parenthood for sexual and gender minorities must be assured as a matter of reproductive justice. (shrink)

The present study examined what participants perceive of their hand movements when using a tool. In the experiments different gains for either the x-axis or the y-axis perturbed the relation between hand movements on a digitizer tablet and cursor movements on a display. As a consequence of the perturbation participants drew circles on the display while their covered hand movements followed either vertical or horizontal ellipses on the digitizer tablet. When asked to evaluate their hand movements, participants were extremely uncertain (...) about their trajectories. By varying the amount of visual feedback, findings indicated that the low awareness of one’s own movements originated mainly from an insufficient quality of the humans’ tactile and proprioceptive system or from an insufficient spatial reconstruction of this information in memory. (shrink)

Definition of the problemFrom an ethical point of view we analyse the ruling of the German Federal Joint Committee (Gemeinsamer Bundesausschuss, G‑BA) of September 2019 to revise the guidelines about the coverage of noninvasive prenatal tests (NIPT) by mandatory health insurance, in order to include them under specified conditions. The decision contains four essential elements: a definition of the aim of NIPT testing (to avoid invasive testing), a criterion of access (test must be “necessary” for the pregnant woman to tackle (...) her individual situation), statements about the process of decision-making (after counselling by a physician and case by case) and a normative contextualization (termination of pregnancy under § 218 a German penal law) which is to be found in its explanations. There are tensions in the proposed model that oscillate about two axes: (1) The suffering that results from a possible birth of a child with trisomy or from not knowing about the genetic condition of the fetus can ultimately only be evaluated subjectively, from the perspective of the pregnant woman. (2) The meaning of an individual decision in the case-by-case model remains unclear because when judging about individual cases general points of view also need to be considered. However, we argue that the model of the G‑BA could be a sociopolitically and ultimately also ethically defensible pragmatic solution, exactly because of its paradoxes and its inherent flexibility. (shrink)

Patients at the end of their life who express a wish to die sometimes explain their wish as the desire not to be a burden to others. This feeling needs to be investigated as an emotion with an intrinsically dialogical structure. Using a phenomenological approach, two key meanings of the feeling of being a burden to others as a reason for a wish to die are identified. First, it is an existential suffering insofar as it contains the perception of a (...) plight so desperate that it can only be relieved by the end of the patient’s existence. Second, it is an empathic concern that implies caring about those who bear the burden of caring for the person at the end of their life. It is therefore a moral emotion, encompassing a series of difficulties, including the subjective perception of a stark imbalance between giving and taking, the adequacy of the representation of the caregiver burden in the patient’s mind, and the danger of diminishing the worth of one’s life out of shame or self‐denigration. R. D. Laing’s terminology of crossed perspectives in interexperience is used to systematically distinguish the actual caregiver burden, the patient’s view of the caregiver burden, the stress for the patient in feeling that s/he is a burden to the caregiver, and the caregiver’s view of the patient’s stress. The sense of being a burden implies the belief that the caregiver feels burdened, and the fear that this burden could become unbearable. (shrink)

Currently, the neurosciences challenge the concept of will to be scientifically untenable, specifying that it is our brain rather than our "self" that decides what we want to do. At the same time, we seem to be confronted with increasing possibilities and necessities of free choice in all areas of social life. Based on up-to-date (empirical) research in the social sciences and philosophy, the authors convened in this book address this seeming contradiction: By differentiating the physical, the psychic, and the (...) social realm, the neuroscientific findings can be acknowledged within a comprehensive framework of selves in neoliberal societies. (shrink)

Concepts of interaction theory play a central role in media research that deals with the relationship between media offerings and media reception. They cover the diverse activities of media users as well as the adaptation strategies utilized of mass communication. The first part of this article briefly describes where these broad and poorly defined concepts of interaction can be found in different areas of media research. One of the problems is deciding in which cases media communication can be analyzed using (...) interaction models. Another problem is the lack of differentiation between how people deal with media offerings and how media offerings refer to their users. The second part of the article develops a new perspective in media research, which allows the aspects mentioned above to be assigned to processes of media socialization on the one hand, or to the inclusion by mass communication on the other hand. On this basis new research projects can be designed that represent a necessary addition to the established analysis of media reception and media socialization. This research focuses on processes of inclusion as they can be observed in mass communications, mainly in television. This new component of a sociological media theory demonstrates how mass communication itself is able to create an image of its addressees and, in this way, adapt to an anonymous public. (shrink)

The concept of the ‘well-being of the child’ (like the ‘child’s welfare’ and ‘best interests of the child’) has remained underdetermined in legal and ethical texts on the needs and rights of children. As a hypothetical construct that draws attention to the child’s long-term welfare, the well-being of the child is a broader concept than autonomy and happiness. This paper clarifies some conceptual issues of the well-being of the child from a philosophical point of view. The main question is how (...) well-being could in practice acquire a concrete meaning and content for a particular issue or situation. A phenomenological-hermeneutic research perspective will be outlined that allows the child’s well-being to be elucidated and specified as an anthropological and ethical idea. It is based on a contextual understanding of generative relationships, a combination of the theory and practice of making sense, here described as ‘generative insight’, which could provide ethical guidance for decision making in families, legal practice, medicine or biomedical research. (shrink)

This volume draws on an expanded field of bioethical, sociological and anthropological research, to set a new agenda for discussing the ethics of disclosing prognostic genetic information.

The integration of multisensory information is an essential mechanism in perception and action control. Research in multisensory integration is concerned with how the information from the different sensory modalities, such as the senses of vision, hearing, smell, taste, touch, and proprioception, are integrated to a coherent representation of objects (for an overview, see e.g., Calvert, Spence and Stein, 2004). The combination of information from the different senses is central for action control. For instance, when you grasp for a rubber duck, (...) you can see its size, feel its compliance and hear the sound it produces. Moreover, identical physical properties of an object can be provided by different senses. You can both see and feel the size of the rubber duck. Even when you grasp for the rubber duck with a tool (e.g., with tongs), the information from the proximal hand, from the effective part of the distal tool and from the eyes are integrated in a manner to act successfully (for limitations of this integration see Sutter et al., 2013).Over the recent decade a surge of interest in multisensory integration and action control has been witnessed, especially in connection with the idea of a statistically optimized integration of multiple sensory sources. The human information processing system is assumed to adjust moment-by-moment the relative contribution of each sense’s estimate to a multisensory task. The sense’s contribution depends on its variance, so that the total varia... (shrink)

Le discours officiel de l'Église catholique met volontiers en cause, depuis plusieurs années, la rationalité des Lumières sous le nom de « modernité ». La raison occidentale qui se détourne de la transcendance est accusée de conduire l'humanité à sa perte, rendue responsable de la décadence des mœurs, et de toutes les formes de totalitarisme; la Shoah serait le fruit amer d'une telle perversion.Il est vrai que les Lumières ont été dénoncées depuis longtemps sous des aspects divers, par le Romantisme, (...) par l'École de Francfort, et le sont encore par toutes les critiques adressées à la raison instrumentale. Mais ces critiques émanent de la méme raison, elles s'inscrivent dans la ligne d'une évolution de la rationalité qui a commencé bien avant les Lumières, elles ne rejettent aucun de ses acquis, en particulier la liberté de penser face à tous les autoritarismes, notamment religieux, elles gardent la même vision d'un monde sécularisé.La pensée catholique devrait faire l'effort de mieux comprendre cette évolution pour rester en dialogue avec la raison des temps modernes.For many years now the official discourse of the Catbolic Cburcb bas, witbout besitation, questioned the rationality of the Enlightenment under the name of “modernity”. Western reason that turns away from transcendence is accused of leading bumanity to its destruction. It is held responsible for the decadence of morals and for all types of totalitarianism ; the Shoah would be the bitter fruit of such a perversion.It is true that the Enlightenment bas been denounced for a long time from different points of view, by Romanticism and the Scbool of Frankfurf, and continues to be by all the criticisms addressed to instrumental reason. But these criticisms emanate from the same reason; they are written in the line of an evolution of rationality that begun well before the Enlightenment; they don’t reject any of these gains, in particular the freedom of thougbt in face of all authoritarianisms, especially religious; they keep the same vision of a secularized world.Catholic thougbt ougbt to make an effort to better understand tbis evolution in order to stay in dialogue with the reason of modern times. (shrink)

ABSTRACT This essay examines the role that entomological workers played in U.S. public health efforts during the construction of the Panama Canal (1904–1914). Entomological workers were critical to mosquito control efforts aimed at the reduction of tropical fevers such as malaria. But in the process of studying vector mosquitoes, they discovered that many of the conditions that produced mosquitoes were not intrinsic to tropical nature per se but resulted from the human‐caused environmental disturbances that accompanied canal building. This realization did (...) not mesh well with an American ideology of tropical triumphalism premised on the notion that the Americans had conquered unalloyed tropical nature in Panama. The result, however, was not a coherent counternarrative but a set of intra‐administrative tensions over what controlling nature meant in Panama. Ultimately, entomological workers were loyal not just to the U.S. imperial mission in Panama but also to a modernist culture of science and to the workings of mosquito ecology as they understood them. (shrink)

While the history of Thomas More as a character on stage is long and varied, the humanist made his most regular appearance in Latin school plays across Catholic Europe throughout the seventeenth and eighteenth centuries. Still, only a handful of these plays are known to have survived, all of which were performed on the Jesuit stage. This article sheds light on a newly discovered Neo-Latin More play, which, it argues, was staged at the Benedictine college of Marchiennes in the late-sixteenth (...) or early-seventeenth century. After a brief contextualization and analysis of the manuscript and the tragedy enclosed, the article offers an edition of the Latin text and a study of its intertextual ties with the dramatic oeuvres of Desiderius Erasmus and George Buchanan. (shrink)

Police officers often encounter potentially dangerous situations in which they strongly rely on their ability to identify threats quickly and react accordingly. Previous studies have shown that practical experience and targeted training significantly improve threat detection time and decision-making performance in law enforcement situations. We applied 90-min traditional firearms training as a control condition and a specifically developed intervention training to police cadets. The intervention training contained theoretical and practical training on tactical gaze control, situational awareness, and visual attention, while (...) the control training focused on precision and speed. In a pre- and posttest, we measured decision-making performance as well as response preparation and execution to evaluate the training. Concerning cognitive performance training, the number of correct decisions increased from pre- to posttest. In shoot scenarios, correct decisions improved significantly more in the intervention group than in the control group. In don’t-shoot scenarios, there were no considerable differences. Concerning the training of response preparation and execution in shoot scenarios, the intervention group’s response time, but not hit time, decreased significantly from pre- to posttest. The control group was significantly faster than the intervention group, with their response and hit time remaining constant across pre- and posttest. Concerning the training of tactical action control, the intervention group performed significantly better than the control group. Moreover, the intervention group improved the tactical handling of muzzle position significantly. The results indicate that a single 90-min session of targeted gaze control and visual attention training improves decision-making performance, response time, and tactical handling of muzzle position in shoot scenarios. However, these faster response times do not necessarily translate to faster hit times – presumably due to the motor complexity of hitting an armed attacker with live ammunition. We conclude that theory-based training on tactical gaze control and visual attention has a higher impact on police officers’ decision-making performance than traditional firearms training. Therefore, we recommend law enforcement agencies include perception-based shoot/don’t-shoot exercises in training and regular tests for officers’ annual firearm requalification. (shrink)

Scientific knowledge is experimental knowledge. Such knowledge can be seen as "forbidden," either because the experiments leading to that knowledge are seen as immoral, or because interventions made possible by that knowledge could be morally offensive. There is currently an interesting case in the realm of genetic engineering, in which moral condemnations have been forthcoming but have not been unanimous. Here I present an analysis of this heterogeneity of moral assessment in the hope that this study of a single case (...) might be helpful for the discussion of bioethical generalizations around the category of the "forbidden.". (shrink)

Guidelines provided by the Director of Public Prosecutions suggest that anyone assisting another to commit suicide in England and Wales, or elsewhere, will not be prosecuted provided there are no self-seeking motives and no active encouragement. This reflects the position in Switzerland. There, however, no difference is made between assistance and inducement. In addition, the Swiss approach makes it possible to establish organisations to assist the suicides of both their citizens and foreign visitors. It should not be assumed that this (...) approach is without controversy in Switzerland. Proposals for reform continue to be debated there, not least because of the concern about some of the actual practices of certain end-of-life organisations. It is likely that a few English citizens will continue to avail themselves of these services in Switzerland if they cannot find the help they require here. This paper explores the legitimacy of the current restrictive position adopted towards assisted suicide in England. It argues that the provisions within the guidelines prohibiting organisations that assist suicides, leaves some without the help they need. While legislative decriminalisation of assisted suicide and the establishment of state-sponsored suicide centres would represent the most permissive regime, this paper proposes that this would be a step too far. The preference here is for decriminalisation but adopting a ‘middle way’ between the two extremes: the more permissive approach provided by the ‘Swiss model’ is one that could be employed here, albeit within a more robust regulatory regime. (shrink)

The relationship of genes, genomes, the organism and the environment where development takes place can be explained in two dramatically different ways. The two views are characterized as ,,program theory' and ,,systemic theory' of DNA. The first assumes that genetic information is encoded in DNA and preexists development. Environmental influences are treated as conditions for adequate gene expression, sometimes as selective conditions for different developmental pathways. The second assumes that genetic information that makes a difference in development is generated in (...) the developmental contexts themselves. Environment, according to this account, matters per se, as a distinct kind of causes in developmental systems. The laboratory, a place where person-independent reproducibility of observations is enacted, may act as a selective epistemological factor that makes the program approach more viable than the systemic. Other reasons for the inclination of 20th Century's genetics towards the program view however are rooted in an a priori metaphysical tradition that placed DNA in the role of the essential causa formalis for ontogeny. German Die Beziehung zwischen Genen, Genomen, Organismen und der Umwelt, in der die Entwicklung stattfindet, kann auf zwei dramatisch verschiedene Weisen erklärt werden. Diese beiden Ansichten werden charakterisiert als ,,ProgrammTheorie und als ,,systemische Theorie der DNA. Die erstere nimmt an, dass genetische Information in der DNA codiert ist und vor der Entwicklung schon existiert. Umwelteinfl-üsse werden als Bedingungen für eine adequate Gen expression behandelt, manche als selektive Bedingungen für die Auswahl zwischen verschiedenen Entwicklungswegen. Die zweite Ansicht nimmt an, dass genetische Information, die in der Entwicklung einen Unterschied macht, in den Kontexten der Entwicklung erst erzeugt wird. Die Umwelt ist gemäss diesem Ansatz per se wichtig, als eine eigene Art von Ursachen in sich entwickelnden Systemen. Das Laboratorium, ein Ort, in dem die personenunabhängige Reproduzierbarkeit von Beobachtungen inszeniert wird, kann als ein selek tiver epistemologischer Faktor angesehen werden, der die Programm-Sicht des Genoms favorisiert. Andere Gründe für die Neigung der Genetik des 20. Jahrhunderts zur Programm-Theorie liegen aber in einer metaphysischen Tradi tion, die der DNA die Rolle der essentiellen causa formalis für die Ontogenese verliehen hat. (shrink)

Die allogene Transplantation von Blutstammzellen aus dem Körper von Kindern, die der Spende nicht selbst zustimmen können, in den Körper eines kranken Geschwisterkindes wirft schwierige ethische Fragen auf. Wie kann ein risikobehafteter, fremdnütziger medizinischer Eingriff ethisch gerechtfertigt werden? In dieser Arbeit werden Argumente kritisch untersucht, nach denen das Spenderkind eine Pflicht habe, bei der Transplantation mitzumachen. Die Idee der Pflicht ist nachvollziehbar aus der Perspektive der Eltern, die zwar in einem Fürsorgekonflikt sind (ein Kind zu Gunsten der Rettung des anderen (...) verletzen zu müssen), aber selbst eine Pflicht haben, für das Leben des kranken Kindes zu kämpfen. Eine Analyse des Pflichtbegriffs zeigt jedoch, dass die Erfüllung einer Pflicht daran gebunden ist, entscheidungskompetent zu sein. Drei Wege werden untersucht, eine solche Pflicht dennochzuzuschreiben: i) die Eltern übertragenihre Pflicht auf das Kind; ii) die Interessen des Spenderkindes implizieren eine Pflicht; iii) Geschwisterkinder haben aufgrund ihrer vertrauten Familienbeziehungen Pflichten untereinander, die auch die Pflicht zu spenden beinhalten. Alle drei Zuschreibungsstrategien werden als unhaltbar kritisiert. Das Ergebnis lautet, dass die Pflicht, einem Geschwisterkind Körpergewebe zu spenden, einem nicht-einwilligungsfähigen Kind nicht zugeschrieben werden kann. Andere philosophische Ansätze zur Stammzellspende von Kindern an Familienangehörige müssten entwickelt und geprüft werden. (shrink)

Die allogene Transplantation von Blutstammzellen aus dem Körper von Kindern, die der Spende nicht selbst zustimmen können, in den Körper eines kranken Geschwisterkindes wirft schwierige ethische Fragen auf. Wie kann ein risikobehafteter, fremdnütziger medizinischer Eingriff ethisch gerechtfertigt werden? In dieser Arbeit werden Argumente kritisch untersucht, nach denen das Spenderkind eine Pflicht habe, bei der Transplantation mitzumachen. Die Idee der Pflicht ist nachvollziehbar aus der Perspektive der Eltern, die zwar in einem Fürsorgekonflikt sind (ein Kind zu Gunsten der Rettung des anderen (...) verletzen zu müssen), aber selbst eine Pflicht haben, für das Leben des kranken Kindes zu kämpfen. Eine Analyse des Pflichtbegriffs zeigt jedoch, dass die Erfüllung einer Pflicht daran gebunden ist, entscheidungskompetent zu sein. Drei Wege werden untersucht, eine solche Pflicht dennochzuzuschreiben: i) die Eltern übertragenihre Pflicht auf das Kind; ii) die Interessen des Spenderkindes implizieren eine Pflicht; iii) Geschwisterkinder haben aufgrund ihrer vertrauten Familienbeziehungen Pflichten untereinander, die auch die Pflicht zu spenden beinhalten. Alle drei Zuschreibungsstrategien werden als unhaltbar kritisiert. Das Ergebnis lautet, dass die Pflicht, einem Geschwisterkind Körpergewebe zu spenden, einem nicht-einwilligungsfähigen Kind nicht zugeschrieben werden kann. Andere philosophische Ansätze zur Stammzellspende von Kindern an Familienangehörige müssten entwickelt und geprüft werden. (shrink)

Are we to get rid with representation after all? Since World War II, political philosophy seems to have devoted itself to either the intellectual sabotage of representation, or its defence against all evidence. Nobody seems to have thought that the problem with political representation might be the fact that the way it was thought was by no means correct. Considered as a fundamental principle of Western democracies, it might be at the very level of what a principle implies that representation (...) must be reloaded. For instance, by admitting that as a principle representation is not something that precedes what for which it provides ground (the government, the State, etc.)—but something that follows, that constitutes the final product of representation itself. (shrink)

BackgroundPrecision medicine development is driven by the possibilities of next generation sequencing, information technology and artificial intelligence and thus, raises a number of ethical questions. Empirical studies have investigated such issues from the perspectives of health care professionals, researchers and patients. We synthesize the results from these studies in this review.MethodsWe used a systematic strategy to search, screen and assess the literature for eligibility related to our research question. The initial search for empirical studies in five data bases provided 665 (...) different records and we selected 92 of these publications for inclusion in this review. Data were extracted in a spreadsheet and categorized into different topics representing the views on ethical issues in precision medicine.ResultsMany patients and professionals expect high benefits from precision medicine and have a positive attitude towards it. However, patients and professionals also perceive some risks. Commonly perceived risks include: lack of evidence for accuracy of tests and efficacy of treatments; limited knowledge of patients, which makes informed consent more difficult; possible unavailability of access to precision medicine for underprivileged people and ethnic minorities; misuse of data by insurance companies and employers, potential of racial stigmatization due to genetic information; unwanted communication of incidental findings; changes in doctor-patient-relationship through focusing on data; and the problem that patients could feel under pressure to optimize their health.ConclusionsNational legislation and guidelines already minimize many risks associated with precision medicine. However, from our perspective some problems require more attention. Should hopes for precision medicine’s benefits be fulfilled, then the ethical principle of justice would require an unlimited access to precision medicine for all people. The potential for autonomous patients’ decisions must be greatly enhanced by improvements in patient education. Harm from test results must be avoided in any case by the highest possible data security level and communication guidelines. Changes in the doctor-patient relationship and the impact of precision medicine on the quality of life should be further investigated. Additionally, the cost-effectiveness of precision medicine should be further examined, in order to avoid malinvestment. (shrink)

BackgroundThe landscape of clinical research has evolved over the past decade. With technological advances, the practice of using electronic informed consent (eIC) has emerged. However, a number of challenges hinder the successful and widespread deployment of eIC in clinical research. Therefore, we aimed to investigate the views of various stakeholders on the potential advantages and challenges of eIC.MethodsSemi-structured interviews were conducted with 39 participants from 5 stakeholder groups from across 11 European countries. The stakeholder groups included physicians, patient organization representatives, (...) regulator representatives, ethics committee members, and pharmaceutical industry representatives, and all were involved in clinical research. Interviews were analyzed using the framework method.ResultsInterviewees identified that a powerful feature of eIC is its personalized approach as it may increase participant empowerment. However, they identified several ethical and practical challenges, such as ensuring research participants are not overloaded with information and offering the same options to research participants who would prefer a paper-based informed consent rather than eIC. According to the interviewees, eIC has the potential to establish efficient long-term interactions between the research participants and the research team in order to keep the participants informed during and after the study. Interviewees emphasized that a personal interaction with the research team is of utmost importance and this cannot be replaced by an electronic platform. In addition, interviewees across the stakeholder groups supported the idea of having a harmonized eIC approach across the European Member States.ConclusionsInterviewees reported a range of design and implementation challenges which needs to be overcome to foster innovation in informing research participants and obtaining their consent electronically. It was considered important that the implementation of eIC runs alongside the face-to-face contact between research participants and the research team. Moreover, interviewees expect that eIC could offer the opportunity to enable a personalized approach and to strengthen continuous communication over time. If successfully implemented, eIC may facilitate the engagement of research participants in clinical research. (shrink)

Improving human characteristics goes beyond compensating for an impairment. This book explores the rich and complex relationship between enhancement and impairment, showing that the study of disability offers new ways of thinking about the social and ethical implications of improving the human condition.

The article explores the underlying reasons for patients’ self‐perception of being a burden (SPB) in family settings, including its impact on relationships when wishes to die (WTD) are expressed. In a prospective, interview‐based study of WTD in patients with advanced cancer and non‐cancer disease (organ failure, degenerative neurological disease, and frailty) SPB was an important emerging theme. In a sub‐analysis we examined (a) the facets of SPB, (b) correlations between SPB and WTD, and (c) SPB as a relational phenomenon. We (...) analyzed 248 interviews with 62 patients, their family caregivers, and professionals using grounded theory and interpretive phenomenological analysis. SPB appeared as important empathic concern in care situations. Patients expressed many sorts of concerns for others, but also perceived an altered self‐understanding that did not meet mutual expectations within relationships. In SPB associated with WTD three constellations were found: (a) WTD to unburden others; (b) patients decided against hastening death to prevent being a further burden to others (in these cases, the SPB counteracted the wish to die); and (c) both wishes for and against dying were sustained by SPB. These patients often felt paralyzed and suffered deeply. Family caregivers felt emotionally touched by SPB and tried to unburden patients by caring and compassion. We concluded that the impact of SPB on a WTD and the various meanings the facets of SPB have in balancing relationships need to be worked out individually. An early palliative and narrative approach is warranted. (shrink)

The social interface between reproductive medicine and embryonic stem cell research has been investigated in a pilot study at a large IVF clinic in central China. Methods included observation, interviews with hospital personnel, and five in-depth qualitative interviews with women who underwent IVF and who were asked for their consent to the donation of embryos for use in medical (in fact human embryonic stem cell) research. This paper reports, and discusses from an ethical perspective, the results of an analysis of (...) these interviews. The participants talked of extreme social pressure to become pregnant. Once they had a baby, ‘spare’ embryos lost practical significance due to the Chinese one-child policy. In the context of decision making about donating embryos to research, the women used the clinical distinctions between ‘good and bad quality’ embryos and also between frozen and transferred embryos, as guiding moral distinctions. In the absence of concrete information about what sort of research their embryos should be used for, the women interviewed either refused consent (for fear that the embryo would be given to another couple) or accepted, expressing motives of solidarity with other women in a similar situation. This reveals that they filled the knowledge gap with an image of research improving fertility treatment. (shrink)

There is no consensus about the ethical ideal of genetic counselling and decision making. This paper reviews and discusses some of the most prominent ethical arguments that have been brought forward against the non-directiveness principle (NDP), which has been the ethical gold standard for a long time. These arguments can be classed in four categories: (i) NDP can be against the best interests of the individuals concerned; (ii) NDP has ideological elements that do not adequately represent the counselling ethos; (iii) (...) NDP was historically a defensive tool that protected the interests of geneticists against social criticism and against litigation; (iv) NDP falsely assumes individual responsibility and hides the shared responsibility of other social actors. The paper argues that a serious understanding of moral space, which people need in order to make ‘their own’ decisions, leads to a necessarily relational concept of agency. The positive counterpart of NDP is to allow a space for agency. Allowing agency implies offering the kind of support that the decision-making person really needs. To make a good decision about personal genetics implies being empowered to act as a contextually sensitive person who is aware of relationships and corresponding responsibilities. (shrink)

Abstract: This working paper focuses on the question whether there is a therapeutic imperative that, in specific situations, would oblige us to perform genome editing at the germline level in the context of assisted reproduction. The answer to this central question is discussed primarily with reference to specific scenarios where preimplantation genetic diagnosis (PGD) does not represent an acceptable alternative to germline genome editing based on either medical, or ethical, or – from the perspective of the potential parents – moral (...) or religious grounds. This article deals with four different types of case constellations that result from these possible reasons against PGD as well as from the necessity or dispensability of a subsequent “control PGD.” These cases are discussed based on hypotheses concerning contextual factors and theoretical assumptions. In conclusion, we point out that if our assumptions are correct, there is probably no therapeutic imperative for genome editing at the germline level. We draw this rationale from the fact that germline interventions are likely not person-affecting. However, we caution the reader that our result is preliminary and needs to be more carefully examined in future work in light of the bioethical debate and potential objections. -/- // Abstract: Im Zentrum dieses Working Papers steht die Frage, ob es einen therapeutischen Imperativ geben kann, der uns, in bestimmten Situationen, verpflichten würde, eine Genomeditierung (genome editing) auf Keimbahnebene im Rahmen der assistierten Befruchtung vorzunehmen. Die Antwort auf diese zentrale Frage wird insbesondere mit Bezug auf Fälle diskutiert, in denen das Verfahren der Präimplantationsdiagnostik (PID) keine aus entweder medizinischen oder ethischen oder – aus Sicht der potentiellen Eltern – moralischen bzw. religiösen Gründen akzeptable Alternative zu einem Keimbahneingriff darstellt. Die möglichen Gründe gegen die PID sowie die Erforderlichkeit oder Verzichtbarkeit einer nachfolgenden «Kontroll-PID» ergeben vier verschiedene Fallkonstellationen, denen sich der Beitrag zuwendet. Auf Grundlage von Hypothesen zu kontextuellen Faktoren und theoretischen Annahmen diskutieren wir diese Fälle. Im Ergebnis verweisen wir darauf, dass es, wenn unsere Annahmen zutreffen, vermutlich keinen therapeutischen Imperativ zum genome editing auf Keimbahnebene gibt. Dies begründet sich daraus, dass der Keimbahneingriff vermutlich nicht als personenbezogen (person-affecting) zu bezeichnen ist. Wir weisen jedoch darauf hin, dass unser Ergebnis vorläufig ist und unter Berücksichtigung der bioethischen Debatte und möglicher Einwände genauer geprüft werden muss. -/- // Résumé: Ce Working Paper se concentre sur la question de l’existence d’un impératif thérapeutique qui, dans des situations spécifiques, nous obligerait à réaliser une édition du génome au niveau de la lignée germinale dans le cadre de la procréation assistée. Afin de répondre à cette question centrale nous développons quatre scénarios spécifiques dans lesquels le diagnostic préimplantatoire (DPI) ne représente pas une alternative acceptable à l’édition du génome germinal pour des raisons médicales, éthiques ou – du point de vue des futurs parents – morales ou religieuses. Cet article traite de quatre constellations différentes de cas résultant des raisons mises en avant pour s'opposer au DPI ainsi que de la nécessité ou de l’inutilité d’un ultérieur « DPI de contrôle » Ces cas sont discutés sur la base d’hypothèses portant sur les facteurs contextuels et sur les présupposés théoriques. En conclusion, nous soulignons que si nos hypothèses sont correctes, il n’y a probablement aucun impératif thérapeutique justifiant l’édition du génome au niveau de la lignée germinale. Nous arrivons à cette conclusion parce qu’une intervention au niveau de la lignée germinale n’est probablement pas susceptible d’affecter la personne. Cependant, nous mettons en garde le lecteur sur le fait que notre conclusion est préliminaire et qu’elle doit être examinée avec soin dans des futurs travaux instruits par le débat bioéthique et par les éventuelles objections. (shrink)

Guidelines recommend a ‘do-not-resuscitate’ code status for inpatients in which cardiopulmonary resuscitation attempts are considered futile because of low probability of survival with good neurological outcome. We retrospectively assessed the prevalence of DNR code status and its association with presumed CPR futility defined by the Good Outcome Following Attempted Resuscitation score and the Clinical Frailty Scale in patients hospitalised in the Divisions of Internal Medicine and Traumatology/Orthopedics at the University Hospital of Basel between September 2018 and June 2019. The definition (...) of presumed CPR futility was met in 467 of 2889 patients. 866 patients had a DNR code status. In a regression model adjusted for age, gender, main diagnosis, nationality, language and religion, presumed CPR futility was associated with a higher likelihood of a DNR code status. In the subgroup of patients with presumed futile CPR, 144 of 467 had a full code status, which was independently associated with younger age, male gender, non-Christian religion and non-Swiss citizenship. We found a significant proportion of hospitalised patients to have a full code status despite the fact that CPR had to be considered futile according to an established definition. Whether these decisions were based on patient preferences or whether there was a lack of patient involvement in decision-making needs further investigation. (shrink)

ABSTRACT The part played by time in ethics is often taken for granted, yet time is essential to moral decision making. This paper looks at time in ethical decisions about having a genetic test. We use a patient‐centred approach, combining empirical research methods with normative ethical analysis to investigate the patients' experience of time in (i) prenatal testing of a foetus for a genetic condition, (ii) predictive or diagnostic testing for breast and colon cancer, or (iii) testing for Huntington's disease (...) (HD). We found that participants often manipulated their experience of time, either using a stepwise process of microdecisions to extend it or, under the time pressure of pregnancy, changing their temporal ‘depth of field’. We discuss the implications of these strategies for normative concepts of moral agency, and for clinical ethics. (shrink)

In light of scientific advances such as genomics, predictive diagnostics, genetically engineered agriculture, nuclear transfer cloning, and the manipulation of stem cells, the idea that genes carry predetermined molecular programs or blueprints is pervasive. Yet new scientific discoveries—such as rna transcripts of single genes that can lead to the production of different compounds from the same pieces of dna—challenge the concept of the gene alone as the dominant factor in biological development. Increasingly aware of the tension between certain empirical results (...) and interpretations of those results based on the orthodox view of genetic determinism, a growing number of scientists urge a rethinking of what a gene is and how it works. In this collection, a group of internationally renowned scientists present some prominent alternative approaches to understanding the role of dna in the construction and function of biological organisms. Contributors discuss alternatives to the programmatic view of dna, including the developmental systems approach, methodical culturalism, the molecular process concept of the gene, the hermeneutic theory of description, and process structuralist biology. None of the approaches cast doubt on the notion that dna is tremendously important to biological life on earth; rather, contributors examine different ideas of how dna should be represented, evaluated, and explained. Just as ideas about genetic codes have reached far beyond the realm of science, the reconceptualizations of genetic theory in this volume have broad implications for ethics, philosophy, and the social sciences. Contributors. Thomas Bürglin, Brian C. Goodwin, James Griesemer, Paul Griffiths, Jesper Hoffmeyer, Evelyn Fox Keller, Gerd B. Müller, Eva M. Neumann-Held, Stuart A. Newman, Susan Oyama, Christoph Rehmann-Sutter, Sahotra Sarkar, Jackie Leach Scully, Gerry Webster, Ulrich Wolf. (shrink)

Rationale In Belgium, several policies regulating reimbursement of acid suppressant drugs and evidence-based recommendations for clinical practice were issued in a short period of time, creating a unique opportunity to observe their effect on prescribing. Aims and objectives To describe the evolution of prescriptions for acid suppressants and explore the interaction of policies and practice recommendations with prescribing patterns. Method Monthly claims-based data for proton pump inhibitors (PPIs) and H-2-antihistamines by general practitioners, internists and "astroenterologists were obtained from the Belgian (...) national health insurance database (1997-2005). The evolution of reimbursed defined daily doses and expenses after introduction of reimbursement regulations and dissemination of practice recommendations was explored. Results Recommendations had no impact on prescribing. All changes can be related to concomitant policies. Lifting reimbursement restrictions for cheaper products did not control growth or save costs in the Iona term. Only restricting reimbursement of all PPIs managed to curb the growth. We observed an unintended increase of non-omeprazole PPIs by gastroenterologists. Conclusions Reimbursement policies influence prescribing, but their effect can be unintended. A dialogue between policymakers and guideline developers, and evidence-based policies that are linked to clinical guidelines, could be an effective way to pursue both cost-containment and quality of care. (shrink)

This paper is based on linked qualitative studies of the donation of human embryos to stem cell research carried out in the United Kingdom, Switzerland, and China. All three studies used semi-structured interview protocols to allow an in-depth examination of donors’ and non-donors’ rationales for their donation decisions, with the aim of gaining information on contextual and other factors that play a role in donor decisions and identifying how these relate to factors that are more usually included in evaluations made (...) by theoretical ethics. Our findings have implications for one factor that has previously been suggested as being of ethical concern: the role of gratitude. Our empirical work shows no evidence that interpersonal gratitude is an important factor, but it does support the existence of a solidarity-based desire to “give something back” to medical research. Thus, we use empirical data to expand and refine the conceptual basis of bioethically theorizing the IVF–stem cell interface. (shrink)

In November 2004, the Swiss population voted to accept a law on research using human embryonic stem cells. In this paper, we use Switzerland as a case study of the shaping of the ostensibly ethical debate on the use of embryos in embryonic stem cell research by legal, political and social constraints. We describe how the national and international context affected the content and wording of the law. We discuss the consequences of the revised law's separation of stem cell research (...) from other forms of embryo research, its definitions of embryo and of spare embryos, and the introduction of donorship into the Swiss ethical debate on IVF. We focus on the exclusion of the potential embryo donors' voices and perspectives from the debate, and consider the effects of this exclusion on ethical discourse and the political process. (shrink)