Law, bioethics and practice in France: forging a new legislative pact

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.     

Public accountability of newborn screening: Collective knowing and deciding

A number of European countries have expanded their screening programme considerably during the last decade. Other countries have, however, not expanded their programme substantially. In this paper, I will compare UK and Austria, two countries representing two ends of the European spectrum. Focussing on the decision-making processes behind the design and expansion of newborn screening, I draw on Sheila Jasanoff's concept of “civic epistemology” (Jasanoff, S. (2005). Designs on Nature. Princeton and Oxford: Princeton University Press.) to investigate how the chosen countries provide information in order to give account for their respective screening policies. In particular, I analyse how key institutions in the UK and Austria use scientific expertise to explain and justify national screening programmes. For this purpose, I compare the material that is made available to the public, including policy documents, scientific studies, medical guidelines, legal regulation, advisory committee reports and public engagement exercises. It was found that the observed differences in the accountability practices are rooted in nationally traditional forms of policy making. However, whether or not these repertoires become indeed realised is a more contingent matter and is often triggered by events which evoke a response from the medical and policy-making actors.     

Euthanasia and end-of-life practices in France and Germany. A comparative study

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.     

Human rights for women: the ethical and legal discussion about Female Genital Mutilation in Germany in comparison with other Western European countries

Within Western European countries the number of women and girls already genitally mutilated or at risk, is rising due to increasing rates of migration of Africans. The article compares legislative and ethical practices within the medical profession concerning female genital mutilation (FGM) in these countries. There are considerable differences in the number of affected women and in legislation and guidelines. For example, in France, Great Britain and Austria FGM is included in the criminal code as elements of crime, whereas in Germany and Switzerland FGM is brought to trial as bodily injury. So far trials only in France and Switzerland in connection with FGM resulted in convictions. France and Great Britain as former Colonial countries serve as an example of countries with a comparably great number of African immigrants. These countries have the best possibilities to intervene preventatively, due to legislation and detailed medical guidelines. For instance, an obligation exists in France to inform administrative and medical authorities if FGM is suspected. FGM so far is not explicitly part of the curriculum for medical training in any of the examined countries.     

Colonialism,Biko and AIDS: Reflections on the principle of beneficence in South African medical ethics

This paper examines the principle of beneficence in the light of moral and epistemological concerns that have crystallized in the South African context around clinical care. Three examples from the South African experience affecting the development of bioethics are examined: medical colonialism, the death in detention of Steve Biko, and the HIV/AIDS epidemic. Michael Gelfand's book [(1948). The sick African: a clinical study. Cape Town: Stewart Printing Company.] on African medical conditions captures the ambiguous nature of colonial medicine that linked genuine medical treatment with the civilizing mission. Biko's death was a key historical event that deeply implicated the medical profession under apartheid. The present HIV/AIDS epidemic presents the gravest social and political crisis for South African society. All three experiences influence the meaning and relevance of beneficence as a bioethics principle in the South African context. This paper argues for a South African bioethics informed by a critical humanism that takes account of the colonial past, and that does not model itself on an “original wound” or negation, but on positive care-giving practices.     

Healing activities construct the objects of therapy: Medicine's way of seeking truth,organizing forms of reality,regulating patients' bodies,illness and culture?

In this paper, I will explore the concept that healing activities shape the objects of therapy and seek to construct those objects through therapeutic activities. Objects of therapy are the persons, patients, human bodies, diseases, physiological processes and personal suffering—that which clinical medicine constructs through its distinctive formative processes, practices and knowledge. The rationale for choice of philosophical sources namely, Cassirer, Foucault, the anthropological perspective of Good and the sociological account of Frank will be discussed. The claim articulated by Good will be examined and its relationship to culture, illness, medical knowledge, practice, truth, and science. I then focus on Frank's concepts of the patient and the body and how medical knowledge and practices affects it. The concept that the medicalization of the illness narrative silences the patient's voice requiring an ethic of listening will be emphasized, described and further supported by Charon's (2006, Narrative medicine: Honoring the stories of illness. New York, NY: Oxford University Press) and Cassell's (2015, The nature of suffering and the goals of medicine. New York, NY: Oxford University Press) thoughts on narrative of illness in clinical medicine. My position concludes that healing activities construct the objects of therapy: as the medical culture's way of seeking truth; as medicine's way of mediating and organizing forms of reality through culture and symbolic forms; and, as medicine's way of entering the body and constructing the disease. Lastly, I suggest that in spite of the remarkable progress in the control of disease, the failure to address the interpretation of illness meanings is a fundamental flaw in the work of “doctoring.” The experience and meanings of illness are at the centre of clinical practice and is a moral, political, ethical and professional obligation. The person is a cultural construct, a complex and culturally shaped way of experiencing self and other, and cultural “work” is required to constitute the person who is the object of medical attention and it also necessitates the ethic of listening.     

我生“君”已老——高龄生育的伦理困境

社会的迅速发展导致人们生育观念、生活观念发生改变,很多女性由于学业、事业、个人追求等因素推迟生育年龄。随着我国二胎政策的全面放开,辅助生殖技术(ART)的广泛应用,高龄夫妇求子的愿望已可以尽量得以实现,因此我生"君"已老的社会现象在未来十几年中必将引起社会关注。不过对高龄者实施ART的有效性降低,费用增加,母亲和后代都存在健康隐患,为人父母的质量大打折扣,孩子的利益也受到影响,因此对ART规定年龄限制是有益于社会的。如何理性面对和处理高龄夫妇的生育要求是一个令生殖医生和妇产科医生棘手的问题。     

For an Ethnomethodology of Healthcare Ethics

This paper considers the utility of Ethnomethodology (EM) for the study of healthcare ethics as part of the empirical turn in Bioethics. I give a brief introduction to EM through its respecification of sociology, the specific view on the social world this generates and EM's posture of ‘indifference’. I then take a number of EM concepts and articulate each in the context of an EM study of healthcare ethics in professional practice. Having given an overview of the relationship and perspective EM might bring to the professional practice of healthcare ethics I consider whether and how such an approach could be deployed. Whilst an ethnographic study might be problematic I suggest a number of alternative methods through which such EM research could be accomplished. I conclude with the suggestion that, as a particular approach to sociological research, EM offers good deal of potential for the empirical study of healthcare ethics in practice which could result in an improved reflexive understanding of professional ethical practices in bioethics.     

The EURONIC Project: a European concerted action on information to parents and ethical decision-making in neonatal intensive care

The paper presents the background, objectives and methods of a European concerted action project aimed at exploring the transmission of information to parents and the ethical decision-making process in neonatal intensive care from the perspective of health personnel, and in relation to the legal, cultural, social and ethical backgrounds of the various European countries. Eight countries are taking part in the project (France, Germany, Italy, Luxembourg, Spain, Sweden, The Netherlands and the United Kingdom), which is about to be extended also to Central and Eastern Europe (Estonia, Lithuania and Hungary). In each of them, the medical and nursing personnel of a number of randomly selected units will be interviewed through an anonymous, self-administered questionnaire. Information on the organisation and policies of the Units and on the national legislation will also be collected. The key features of the study lie in the multidisciplinary and international approach, the random selection of the sample as a guarantee of representativeness and lack of selection bias, the focus on the staff practices as well as on their attitudes and opinions.     

Psychoanalysis and bioethics: a Lacanian approach to bioethical discourse

This article aims to develop a Lacanian approach to bioethics. Point of departure is the fact that both psychoanalysis and bioethics are practices of language, combining diagnostics with therapy. Subsequently, I will point out how Lacanian linguistics may help us to elucidate the dynamics of both psychoanalytical and bioethical discourse, using the movie One flew over the Cuckoo’s Nest and Sophocles’ tragedy Antigone as key examples. Next, I will explain the ‘topology’ of the bioethical landscape with the help of Lacan’s three dimensions: the imaginary, the symbolical and the real. This will culminate in an assessment of the dynamics of bioethical discourse with the help of Lacan’s theorem of the four discourses. Bioethics, I will argue, is not a homogeneous discourse. Rather, four modalities of bioethical discourse can be distinguished, all of them displaying specific weaknesses and strengths, opportunities and threats. This will be elucidated with the help of two case studies, namely the debates on human reproductive technologies and on the use of animals as biomedical research models.     

Experts as 'storytellers' in reproductive genetics:exploring key issues

The paper reports findings from a European study on experts' perceptions of reproductive genetics, and explores the notion of experts as 'genetic story tellers' and producers of genetic ideology. The first part provides experts' accounts of families who are perceived as being in need of prenatal genetic screening. Here, I reflect on the types of claims experts construct as well as on the impact of these claims. The second part is a theoretical elaboration of how, in making their claims, experts employ a series of normative strategies (i.e. claiming ownership of knowledge and practices, separating the social and scientific, deploying genetic foundationalism and advocating the application of bioethics) in their genetics work. The conclusion is that, while these issues are enormously difficult and socially complex, we must be vigilant because the moral and ethical values of our society may be at stake.     

Constructing Empirical Bioethics: Foucauldian Reflections on the Empirical Turn in Bioethics Research

The empirical turn in bioethics has been widely discussed by philosophical medical ethicists and social scientists. The focus of this discussion has been almost exclusively on methodological issues in research, on the admissibility of empirical evidence in rational argument, and on the possible superiority of empirical methods for permitting democratic lay involvement in decision-making. In this paper I consider how the collection of qualitative and quantitative social research evidence plays its part in the construction of social order, and how this creates certain paradoxes for the normative ideal of a public bioethics. The analysis in this paper is based on Foucauldian ideas, and on recent work in the history of the human sciences. The paper closes with some open questions for theoretical work in the sociology and philosophy of bioethics.     

From ‘Implications’ to ‘Dimensions’: Science, Medicine and Ethics in Society

Much bioethical scholarship is concerned with the social, legal and philosophical implications of new and emerging science and medicine, as well as with the processes of research that under-gird these innovations. Science and technology studies (STS), and the related and interpenetrating disciplines of anthropology and sociology, have also explored what novel technoscience might imply for society, and how the social is constitutive of scientific knowledge and technological artefacts. More recently, social scientists have interrogated the emergence of ethical issues: they have documented how particular matters come to be regarded as in some way to do with ‘ethics’, and how this in turn enjoins particular types of social action. In this paper, I will discuss some of this and other STS (and STS-inflected) literature and reflect on how it might complement more ‘traditional’ modes of bioethical enquiry. I argue that STS might (1) cast new light on current bioethical issues, (2) direct the gaze of bioethicists towards matters that may previously have escaped their attention, and (3) indicate the import not only of the ethical implications of biomedical innovation, but also how these innovative and other processes feature ethics as a dimension of everyday laboratory and clinical work. In sum, engagements between STS and bioethics are increasingly important in order to understand and manage the complex dynamics between science, medicine and ethics in society.     

Managing ethical uncertainty: implicit normativity and the sociology of ethics

This article illustrates and discusses the idea of ‘implicit normativity’, and specifically its relevance to the management of ethical uncertainty. In particular I consider (i) the role implicit normativity plays in masking and containing potential ethical uncertainty and (ii) the contrast and boundary between implicit normativity and ‘overt ethics’ where ethical contestation – as well as particular processes and agents – are highlighted as salient. Using examples I show how the idea of implicit normativity can be applied not only to specific practices but also to whole fields of practice. The notion of ‘moral settlements’ – along with the explanatory role of the threat of ‘chaos’ – is introduced and elucidated to develop these points. I argue that attention to the management of ethical uncertainty shows the critically important contribution that an ambitious sociology of ethics can make to clinical ethics, including by helping to formulate and drive home questions about the ‘ethics of ethics’. The account presented here has resonances with work that seeks to use sociological lenses to move beyond conventional bioethics, including Petersen's (2013) call for a ‘normative sociology’.     

Clinical ethics and values: how do norms evolve from practice?

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.     

Advance Directives in English and French Law: Different Concepts,Different Values,Different Societies

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.     

Access to assisted reproductive technologies in France: the emergence of the patients’ voice

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.     

Grading the “Good” Body: A Poststructural Feminist Analysis of Body Mass Index Initiatives

This article analyzes discourse surrounding Arkansas's legislation requiring public schools to measure students' body mass index (BMI) annually and to send the scores to parents on children's report cards. Using poststructural feminist sensibilities, I explore the tensions experienced by parents, children, educators, and policymakers as this mandate was debated and implemented. The discourse illuminates salient issues about disproportionate disparities in health status that exist in communities with fewer resources, and the potentially unintended gendered consequences of health policies. I explain three dominant threads of discourse: How the economic costs of childhood obesity opened a policy window for the legislation; the presence of tensions between freedom and social control; and how BMI discourses inscribe ideological visions of bodies. Ultimately, the analysis offers insight into the discursive nature of policymaking and how class and gender are implicated in health interventions.     

Global frameworks,local strategies: Women's rights,health, and the tobacco control movement in Argentina

ABSTRACT

The article examines how civil society organisations in Argentina used the United Nations Convention on the Elimination of All Forms of Discrimination Against Women (CEDAW) to frame the country's failure to enact strong national tobacco control legislation as a violation of women's rights in the late 2000s. We analyze this case study through the politics of scale, namely the social processes that produce, reproduce, and contest the boundaries of policies and socio-economic relations. This approach understands how multiple scales overlap and connect to obstruct or enhance the right to health in Latin America. In Argentina, the global organisation of tobacco companies, the reach of international financial institutions and the national dynamics of economic austerity and export-orientation promoted the local production and use of tobacco (leaf and cigarettes) and reproduced health inequalities in the country throughout the 1990s and the early 2000s. Yet, the visible legacy of local and national human rights struggles in the adoption of international human rights treaties into Argentina's national constitution allowed the tobacco control movement to link the scale of women's bodies to the right to health through the use of CEDAW to change national legislation, tackling the social determinants of the tobacco epidemic.