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)

The challenge in maintaining patient autonomy regarding medical decision-making and confidentiality lies not only in control over information transferred to and regarding patients, but in the ambiguity of autonomy itself. post-modernity is characterized by the recognition of not just numerous accounts of autonomy, but by the inability in a principled fashion to select one as canonical. Autonomy is understood as a good, a right-making condition, and an element of human flourishing. In each case, it can have a different content, depending (...) in part on whether it is given a nomological or a volitional construal. Different accounts of autonomy can lead to strikingly different understandings of appropriate behavior, including the argument that one ought on behalf of autonomy to liberate individuals from the sense of autonomy they themselves affirm. In the face of competing accounts of moral probity, autonomy in a secular morality and bioethics must by default be understood in terms of the permission of patients, which makes space for numerous moral accounts and different communal construals of free choice, which in turn will legitimate different practices of informing patients and maintaining confidentiality. (shrink)

This article, arising from a comparative European Commission project, analyses different national perspectives on bioethics issues.

Even in the increasingly individualized American medical system, advocates of 'personalized medicine' claim that healthcare isn't individualized enough. With the additional glamour of new biotechnologies such as genetic testing and pharmacogenetics behind it, 'Me Medicine'-- personalized or stratified medicine-- appears to its advocates as the inevitable and desirable way of the future. Drawing on an extensive evidence base, this book examines whether these claims are justified. It goes on to examine an alternative tradition rooted in communitarian ideals, that of the (...) common good as a goal in medicine. (shrink)

This article provides a concise overview of the history of scholarship on solidarity in Europe and North America. While recent decades have seen an increase in conceptual and scholarly interest in solidarity in North America and other parts of the Anglo-Saxon world, the concept is much more strongly anchored in Europe. Continental European politics in particular have given rise to two of the most influential traditions of solidarity, namely, socialism and Christian ethics. Solidarity has also guided important public instruments and (...) institutions in Europe. Despite the much stronger affinity of continental European societies to solidaristic thinking, we argue that solidarity has much to offer for addressing societal challenges on both sides of the Atlantic and beyond. After proposing a working definition of solidarity that highlights its utility for guiding policy and practice, we give an example of how a solidarity-based perspective can shape instruments for the governance of data use. (shrink)

In Western societies advance directives are widely recognised as important means to extend patient self-determination under circumstances of incapacity. Following other countries, England and France have adopted legislation aiming to clarify the legal status of advance directives. In this paper, I will explore similarities and differences in both sets of legislation, the arguments employed in the respective debates and the socio-political structures on which these differences are based. The comparison highlights how different legislations express different concepts emphasising different values accorded (...) to the duty to respect autonomy and to protect life, and how these differences are informed by different socio-political contexts. Furthermore each country associates different ethical concerns with ADs which raise doubts about whether these directives are a theoretical idea which is hardly applicable in practice. (shrink)

Name der Zeitschrift: Jahrbuch für Wissenschaft und Ethik Jahrgang: 17 Heft: 1 Seiten: 331-344.

The coming of bioethics -- The coming of bioethicists -- "Choices on our conscience": the inauguration of the Kennedy Institute of Education -- "Hello, Dolly": bioethics in the media -- Celebrating bioethics and bioethicists -- Thinking socially and culturally in bioethics -- Reminiscences of observing participants -- Bioethics circles the globe -- Bioethics in France -- The development of bioethics in the Islamic Republic of Pakistan -- The coming of the culture wars to American bioethics.

Starting from examples of concrete situations in France, I show that autonomy and solidarity can coexist only if the parameters of autonomy are redefined. I show on the one hand that in situations where autonomy is encouraged, solidarity nevertheless remains at the foundation of their practices. On the other hand, in situations largely infused with family solidarity, the individual autonomy may be put in danger. Yet, based on my ethnographic observations regarding clinical encounters and medical secrecy, I show that while (...) solidarity may endanger individual autonomy, it does not necessarily endanger autonomy itself. The social practices observable in France reflect the reality of an autonomy that goes beyond the individual, a reality that involves a collective subject and includes solidarity. The opposition between these two values can then be resolved if the content of the notion of autonomy is understood to be dependent on its cultural context of application and on its social use. (shrink)

Since the early 1970s, Marcel Mauss’s Essai sur le Don, translated into English as The Gift in 1954, has been a standard reference in the social science and bioethical literature on the use of human body parts and substances for medical and research purposes. At that time, three social scientists—political scientist Richard Titmuss in the United Kingdom and sociologist Renée C. Fox working with historian Judith Swazey in the United States—had the idea of using this concept to highlight the fundamental (...) structure of the biomedical practices they were studying, respectively, blood donation, and hemodialysis and organ transplantation. The fact that these first applications of Mauss’s essay should emerge in English- rather than in French-speaking countries raises the question of what the translation of the essay, and notably of the word don as gift, may have to do with this fact. Reading Mauss in translation undoubtedly inspired a seminal approach to interpreting medical and research practices based on bodily giving. This article posits that something may have also been lost: a much broader concept of giving with unquestionable links to the Durkheimian concept of solidarity, which Mauss conceptualizes not only as an obligation but also as a liberty to give. (shrink)

Are there distinctly European values in bioethics, and if there are, what are they? Some Continental philosophers have argued that the principles of dignity, precaution, and solidarity reflect the European ethos better than the liberal concepts of autonomy, harm, and justice. These principles, so the argument goes, elevate prudence over hedonism, communality over individualism, and moral sense over pragmatism. Contrary to what their proponents often believe, however, dignity, precaution, and solidarity can be interpreted in many ways, and it is not (...) clear which reading would, or should, be favored by popular opinion. It is therefore dangerous to think that any one understanding of ``European'', or any other, values could be legitimately imposed on those who have different ideas about morality in health care and related fields. Bioethical principles should be employed to promote discussion, not to suppress it. (shrink)

This article raises the question of whether in both the United States and in France, an individual’s autonomy and private decision-making right in matters of health care and access to reproductive technologies can be conciliated with the general interest, and more specifically, the role of the State. Can a full-fledged right to privacy, the ability to exercise one’s autonomy, exist alongside the general interest, and depend neither on financial resources like in the United States nor on centralised government decisions or (...) the medical hierarchy like in France? The contrast between these two modern democracies justify the importance of comparing them. I will demonstrate that overlaps do exist: the free exercise of religion and opinion, freedom of expression, the inherent value of each individual. What differs, however, are the institutions and how they provide, protect, promote, or frame access to and expressions of these democratic principles. The impact of the global economy, the exposure of people around the world to each other via the internet, and the mirror effects of social media, blogs, and other such forums, have created new perspectives that countries project onto one another. For example, does France now seem to tout ‘autonomy’ as a new and important value because it appears to be an ‘American success story’? Does the United States now seem to value human rights and a social-democratic approach because of the ‘French model’? There seems to be some truth behind these assertions, but as this article will demonstrate, the portrayals of what the ‘right to privacy’ is in the United States and what ‘socialised medicine’ is in France are not necessarily fully accurate. (shrink)

Solidarity has for a long time been referred to as the core value underpinning European health and welfare systems. But there has been debate in recent years about whether solidarity, with its alleged communitarian content, can be reconciled with the emphasis on individual freedom and personal autonomy. One may wonder whether there is still a place for solidarity, and whether the concept of justice should be embraced to analyse the moral issues regarding access to health care. In this article, I (...) will answer this question by analysing the normative foundations of the concept of justice, followed by a deeper examination of the concept of solidarity in continental philosophy. More specifically, I will compare the philosophical traditions rooted in Kant to approaches rooted in Hegel. In addition, I will present the work of Avishai Margalit on the decent society to criticize a predominantly liberal approach to access to health care. The importance of solidarity lies particularly in its emphasis on relational aspects and the role of recognition in care practices, which are usually ignored in liberal approaches to justice. However, the article will argue that solidarity is not an alternative to a rights-based concept of justice, but must be considered as a necessary complement to it. (shrink)

This paper presents the results of a qualitative interview study exploring English and French physicians’ moral perspectives and attitudes towards end-of-life decisions when patients lack capacity to make decisions for themselves. The paper aims to examine the importance physicians from different contexts accord to patient preferences and to explore the role of advance directives in each context. The interviews focus on problems that emerge when deciding to withdraw/-hold life-sustaining treatment from both conscious and unconscious patients; decision-making procedures and the participation (...) of proxies/relatives; previous experience with ADs and views on their usefulness; and perspectives on ways in which the decision-making processes in question might be improved. The analysis reveals differences in the way patient preferences are taken into consideration and shows how these differences influence the reasons physicians in each country invoke to justify their reluctance to adhering to ADs. Identifying cultural differences that complicate efforts to develop the practical implementation of ADs can help to inform national policies governing ADs and to better adapt them to practice. (shrink)

This article traces the way autonomy has become a recognised value in health care in France. In a country that based its social fundamentals on the very idea of solidarity for many years, autonomy has long been considered a foreign ‘Anglo-American principle’. Taking the example of the end-of-life debate, the article shows, however, how the use of the French term ‘accompagnement’ allowed autonomy to be redefined and to be associated with the concept of solidarity. Exploring the arguments used over the (...) past 25 years in professional guidelines, parliamentary reports, ethics committee reports, and legal texts, the authors describe the shift that took place in public and legal discourses on end-of-life care. The analysis demonstrates how the scope of autonomy has been limited by other social values, such as the protection of the dying person, in order to become an accepted social value in its own right. The example of the French end-of-life debate shows that depending on how the concept of autonomy is adapted and applied in a specific context, it can be compatible with the idea of solidarity. Such compatibility has been challenged previously in the international bioethics debate. By demonstrating the possibility of combining autonomy and solidarity, this article makes an important contribution to the international bioethics debate and to the dialogue between countries that are often perceived as significantly different. (shrink)