Heterogeneous assemblages of bioethics and science: the “pre-embryo” debate in America

This paper explores the “pre-embryo” debate in America to analyze the relationship between scientific uncertainty and moral decision-making. This paper explores how an ethical debate among bioethicists around the term “pre-embryo” has been transformed into a scientific “fact” debate between developmental biology and embryology. This transformation is driven by the scientism of ethical reasoning that stresses scientific claims to increase the credibility of ethical claims. This paper concludes that the “pre-embryo” debate is not an ethical controversy over a unified science but rather credibility struggles between two heterogeneous assemblages of science and bioethics.     

Aspects du care et de « l’éthique du care » en psychiatrie

The debate about care and its different forms has developed a lot in social sciences and in moral philosophy, since Carol Gilligan, arguing in a feminist perspective against the prejudices of moral development psychology, has defined an “ethics of care” and claimed that it should be recognized as of the same value as the dominant ethics (Kantian or utilitarian). Following this claim, a variety of researches have been carried out concerning the activity of caring that goes beyond the field of medical practice. However, in the medical field, in which “care” has to be distinguished from “cure,” the development of a theory of care has a strong impact on the conception of treatment (of its organization, its assessment, and the way it is taught). We will focus particularly on what is implied in psychiatry by such a characterization of care.     

Relative Values: Perspectives on a Neuroimaging Technology From Above and Within the Ethical Landscape

In this paper we contribute to “sociology in bioethics” and help clarify the range of ways sociological work can contribute to ethics scholarship. We do this using a case study of an innovative neurotechnology, functional magnetic resonance imaging, and its use to attempt to diagnose and communicate with severely brain-injured patients. We compare empirical data from interviews with relatives of patients who have a severe brain injury with perspectives from mainstream bioethics scholars. We use the notion of an “ethical landscape” as an analogy for the different ethical positions subjects can take—whereby a person’s position relative to the landscape makes a difference to the way they experience and interact with it. We show that, in comparison to studying abstract ethics “from above” the ethical landscape, which involves universal generalizations and global judgements, studying ethics empirically “from the ground,” within the ethical landscape foregrounds a more plural and differentiated picture. We argue it is important not to treat empirical ethics as secondary to abstract ethics, to treat on-the-ground perspectives as useful only insofar as they can inform ethics from above. Rather, empirical perspectives can illuminate the plural vantage points in ethical judgments, highlight the “lived” nature of ethical reasoning, and point to all ethical vantage points as being significant. This is of epistemic importance to normative ethics, since researchers who pay attention to the various positions in and trajectories through the ethical landscape are unlikely to think about ethics in terms of abstract agency—as can happen with top-down ethics—or to elide agency with the agency of policymakers. Moreover, empirical perspectives may have transformative implications for people on the ground, especially where focus on the potential harms and benefits they face brings their experiences and interests to the forefront of ethical and policy discussion.     

NEW DIRECTIONS IN AFRICAN BIOETHICS: WAYS OF INCLUDING PUBLIC HEALTH CONCERNS IN THE BIOETHICS AGENDA

Research ethics is the most developed aspect of bioethics in Africa. Most African countries have set up Institutional Review Boards (IRBs) to provide guidelines for research and to comply with international norms. However, bioethics has not been responsive to local needs and values in the rest of the continent. A new direction is needed in African bioethics. This new direction promotes the development of a locally‐grounded bioethics, shaped by a dynamic understanding of local cultures and informed by structural and institutional problems that impact the public's health, as well as cognisant of the salient contribution of social sciences and social epidemiology which can bring a lasting impact on African local communities. In today's post‐Structural Adjustment Africa, where healthcare has been liberalized and its cost increased, a bioethics agenda that focuses essentially on disease management and clinical work remains blind in the face of a structural marginalization of the masses of poor. Instead, the multidimensional public health crisis, with which most African countries are confronted, calls for a bioethics agenda that focuses primarily, but not exclusively, on health promotion and advocacy. Such an approach to bioethics reckons with the macro‐determinants of health and well‐being and places clinical and research ethics in the broader context of population's health. The same approach underscores the need to become political, not only by addressing health policymaking processes and procedures, but also by becoming an advocacy forum that includes other constituencies equipped with the potentialities to impact the population's health.     

Bioethics and conflicts of interest

Bioethics has been subject to considerable social criticism in recent years. One criticism that has caused particular discomfort in the bioethics community is that bioethicists, because of the way their work is funded, are involved in profound conflicts of interest that undermine their title to be considered independent moral commentators on developments in biomedicine and biotechnology. This criticism draws its force from the assumption that bioethics is, or ought to be, a type of normative social criticism. Versions of this criticism come from both the political left and right. For instance, such criticisms include allegations that bioethics is inherently socially conservative, that it is inherently “pro-technology”, that it lays spurious claims to moral and social authority and expertise, that its focus on autonomy links it to neoliberal theories of choice, and that it is an ideological mystification of real social relationships and political power. This commentary paper analyses the problem of bioethical conflict of interest, and argues that the types of conflict of interest facing bioethics are inherent to the role of “public intellectual” that bioethicists generally wish to assume. The paper defends this conception of the role of the bioethicist, arguing that bioethicists should be interested and openly so.     

Multibiologism: An anthropological and bioethical framework for moving beyond medicalization

Recent approaches in the medical and social sciences have begun to lay stress on “plasticity” as a key feature of human physiological experiences. Plasticity helps to account for significant differences within and between populations, particularly in relation to variations in basic physiological processes, such as brain development, and, in the context of this article, daily sleep needs. This article proposes a novel basis for the redevelopment of institutions in accordance with growing awareness of human variation in physiological needs, and articulates a theory of multibiologism. This approach seeks to expand the range of “normal” physiological experiences to respond to human plasticity, but also to move beyond critiques of medical practice that see medicine as simply responding to capitalist demands through the medicalization of “natural” processes. Instead, by focusing on how the institutions of U.S. everyday life—work, family, and school—structure the lives of individuals and produce certain forms of sleep as pathological, this article proposes that minor alterations in institutions could result in less pathologization for individuals and communities. Multibiologism provides a foundation for shared priorities in the social sciences, in bioethics, and in medical practice, and may lay the groundwork for emergent collaborations in institutional reform.     

The death of dignity is greatly exaggerated: Reflections 15 years after the declaration of dignity as a useless concept

Fifteen years ago, Ruth Macklin shook the medical community with her claim in the BMJ that dignity is a useless concept. Her essay provoked a storm of reactions. What have we learned from the debate? In this article I analyse the responses to her essay and the following debate to investigate whether she was right that “[d]ignity is a useless concept in medical ethics and can be eliminated without any loss of content.” While some of the commentaries misconstrued her claim and argue against strawmen, others forcefully maintained that the concept of dignity has functions beyond “respect for persons and their autonomy.” One important point that came out of the debate is that dignity is a generic concept that covers more ground than “respect for persons or their autonomy.” In particular, dignity seems to have a wide range of protective functions as well as having reciprocal, relational, and social aspects. Dignity appears more attributional and norm-formative than respect for persons and autonomy. While the claim that dignity is unclear, vague, and can be used sloganistically seems highly relevant, it is argued that this vagueness fulfils important functions in ethics. Moreover, dismissing dignity because of its lack of clarity has implications for “respect for persons” and “autonomy,” which are also used vaguely and sloganistically. No doubt medical ethics should use as a clear concept as the context requires. Nonetheless, dignity still seems to be a widely used generic concept in ethical debates and doing as much ethical work as “respect for persons” or “respect for autonomy.” Therefore, the death of dignity seems to be greatly exaggerated.     

Empirical research in clinical ethics: The ‘committed researcher’ approach

After the ‘empirical turn’ in bioethics, few specific approaches have been developed for doing clinical ethics research in close connection with clinical decision-making on a daily basis. In this paper we describe the ‘committed researcher’ approach to research in clinical ethics that we have developed over the years. After comparing it to two similar research methodological approaches, the ‘embedded researcher’ and ‘deliberative engagement’, we highlight its main features: it is patient-oriented, it is implemented by collegial and multidisciplinary teams, it uses an ethical grid to build the interview guide, and it is geared towards bringing the results to bear on the public debate surrounding the issue at stake. Finally, we position our methodological approach with respect to the ‘is vs. ought’ distinction. We argue that our ‘commitment researcher’ approach to clinical ethics research takes concerned people’s life-building values as the main data, and compares them to the larger normative framework underlying the medical practice at stake.     

For an ethics of promising, or: a few kind words about James Watson

This essay questions some of the limits that both science studies and bioethics have assumed in their engagements with technoscience, and genomics in particular. It argues that these disciplines have privileged an "ethics of suspicion" regarding technoscience, and argues that this is ill-suited to promissory sciences such as genomics. The essay begins to develop elements of an "ethics of friendship" toward genomics, using examples from toxicogenomics and behavioral genetics, to suggest what an ethics of promising might involve.     

Reproduction humaine: le point de vue du philosophe

This article discusses and essential aspect of the link between ethics and life, as expressed in the concept of bioethics. It discusses the various issues related to human reproduction from “the philosopher’s point of view”. This discussion is limited to the principles of this field. The author starts by justifying a philosophical approach to ethical problems in the context of medicine in general and reproduction in particular, a field which specialists, theoreticians or practitioners of medicine and legal medicine in particular, appear to have ignored. This leads to a discussion of the human aspects of reproduction, from questions concerning the nature of living beings (individuals and species) to the relationship between nature and culture (symbol and freedom). Although man “reproduces” and “procreates”, he is also technically able to “produce himself”. This shift from biological reproduction to procreation must take into account problems related to technological science in medicine (technical control of living material and so-called “neutrality” of the technique). The main bioethical issues involving an ethics of decision-making in the field of human reproduction (contraception, abortion, status of the embryo, medically-assisted procreation, desire to master the “form” of the “reproduced” human, or even the “product”, cloning) are then discussed. Finally, the author proposes elements of a “philosophy of point of view”, requiring responsibility for each decision in the context of an “ethics of discussion”.     

The birth of the empirical turn in bioethics

Since its origin, bioethics has attracted the collaboration of few social scientists, and social scientific methods of gathering empirical data have remained unfamiliar to ethicists. Recently, however, the clouded relations between the empirical and normative perspectives on bioethics appear to be changing. Three reasons explain why there was no easy and consistent input of empirical evidence in bioethics. Firstly, interdisciplinary dialogue runs the risk of communication problems and divergent objectives. Secondly, the social sciences were absent partners since the beginning of bioethics. Thirdly, the meta-ethical distinction between 'is' and 'ought' created a 'natural' border between the disciplines. Now, bioethics tends to accommodate more empirical research. Three hypotheses explain this emergence. Firstly, dissatisfaction with a foundationalist interpretation of applied ethics created a stimulus to incorporate empirical research in bioethics. Secondly, clinical ethicists became engaged in empirical research due to their strong integration in the medical setting. Thirdly, the rise of the evidence-based paradigm had an influence on the practice of bioethics. However, a problematic relationship cannot simply and easily evolve into a perfect interaction. A new and positive climate for empirical approaches has arisen, but the original difficulties have not disappeared.     

Can social research paradigms justify the diversity of approaches to social life cycle assessment?

Purpose

The present paper aims to offer an explanation for the diversity of methodological approaches proposed up to the present for social life cycle assessment (sLCA), tracking down its roots in the cultural and scientific heritage of social sciences and especially management sciences. A second aim is to shift the current debate on methodologies to an epistemological level, presenting the first results of an ongoing critical review about which underlying paradigms have been applied in sLCA literature.

Methods

This paper moves from the hypothesis that the diversity of positions in philosophy of science and the “multiparadigmatic” character of social sciences have had repercussions on sLCA literature since its beginnings, probably in an unconscious manner. Therefore, a discriminating reflection on the scientific and disciplinary inheritance that can represent the roots of sLCA has been conducted. The philosophy of science and the role of different research paradigms in social sciences have been deepened to provide an overview of the main elements of a paradigm (in terms of ontology, epistemology, and methodology). Finally, a brief but critical review of 133 selected scientific contributions on sLCA has been conducted to highlight which paradigms have been applied in sLCA studies.

Results and discussion

Recognizing that boundaries between paradigms are subtle and that researchers are rarely conscious of which paradigm underpins their works, a distinction between the interpretivist and post-positivist approaches used by the studies has been carried out on the basis of a text analysis conducted by identifying the main “literal” criteria. From an initial population of 209 studies, we excluded those concerning reviews of sLCA literature and those with selected criteria that were insufficient to catch the epistemological viewpoint of the authors. Among the remaining papers (133), 73 % has been ascribed to the group of interpretivism-oriented paradigms and only 24 % could be ascribed to the post-positivist one; the remaining 3 % is represented by studies with both characteristics. This data deserves some attention because, since the beginnings of sLCA methodologies, most sLCA publications explicitly suggest having the same underlying perspectives as environmental life cycle assessment (eLCA).

Conclusions

In light of the reflections carried out, we argue that it is important, before going into methodological questioning issues, to be aware of which paradigm is underlying. Indeed, in this phase of sLCA development, scholars should go beyond the simple methodological debate and recognize the “multilayered” nature of social phenomena and the multiparadigmatic characteristics of social and management sciences.

     

什么是生命伦理学？——从历史发展的视角

生命伦理学是20世纪60年代兴起于美国的一门新兴学科,旨在应对生命科学和生物技术的发展或医疗保健的演变使人类面临的种种伦理难题。生命伦理学的兴起有着特殊的社会历史背景。它在发展过程中出现的一些里程碑式的案例,对生命伦理学的发展产生了深远的影响。从其发展特征上看,生命伦理学和医学伦理学紧密联系,有着更为广泛的研究内容和独特的专业特性。生命伦理学要有效回应现代医学和生命科学的发展给人类带来的伦理难题,既要准确地界定伦理问题,又要以适当的方式将伦理学基础理论应用到具体问题当中。对生命伦理学的基本理论进行概述。     

From the arcane to the mundane: engaging French publics in discussing clinical applications of genomic technology

Genomic technologies are developing at a time when greater public involvement in research and clinical governance is sought. To this end, empirical bioethics studies, although conceptualized as academic endeavors, may draw on the inclusion of laypeople to justify informing policy. Doing so, they face similar concerns as those addressed to public consultations which cannot be termed democratic a priori and may reinforce the authority of experts. We reflect on these concerns in the process of analyzing the results of a qualitative analysis of eight focus groups (64 participants) held in France during 2010–2012, designed to understand laypeople's views of the ethical debates surrounding genomic medicine. We examine how the notions of “lay” and “expert” play in the framework of the study and how participants situate themselves along this divide. This understanding of the social context in which the publics are situated enables a more reflexive and accurate ethical analysis.     

Bioethics: An Export Product? Reflections on Hands-On Involvement in Exploring the “External” Validity of International Bioethical Declarations

As the technosciences, including genomics, develop into a global phenomenon, the question inevitably emerges whether and to what extent bioethics can and should become a globalised phenomenon as well. Could we somehow articulate a set of core principles or values that ought to be respected worldwide and that could serve as a universal guide or blueprint for bioethical regulations for embedding biotechnologies in various countries? This article considers one universal declaration, the UNESCO Declaration on Bioethics and Human Rights (2005a). General criticisms made in a recent special issue of Developing World Bioethics are that the concepts used in the Declaration are too general and vague to generate real commitment; that the so-called universal values are not universal; and, that UNESCO should not be engaged in producing such declarations which are the domain of professional bioethicists. This article considers these and other criticisms in detail and presents an example of an event in which the Declaration was used: the request by the Republic of Sakha, in Siberia, for a UNESCO delegation to advise on the initiation of a bioethics programme. The Declaration was intended to provide an adequate “framework of principles and procedures to guide states in the formulation of their legislation, policies and other instruments in the field of bioethics” (article 2a). The Declaration was produced, and principles agreed upon, in an interactive and deliberative manner with world-wide expert participation. We argue that the key issue is not whether the general principles can be exported worldwide (in principle they can), but rather how processes of implementation and institutionalisation should take shape in different social and cultural contexts. In particular, broader publics are not routinely involved in bioethical debate and policy-making processes worldwide.     

Anthropological and Sociological Critiques of Bioethics

Anthropologists and sociologists offer numerous critiques of bioethics. Social scientists criticize bioethicists for their arm-chair philosophizing and socially ungrounded pontificating, offering philosophical abstractions in response to particular instances of suffering, making all-encompassing universalistic claims that fail to acknowledge cultural differences, fostering individualism and neglecting the importance of families and communities, and insinuating themselves within the “belly” of biomedicine. Although numerous aspects of bioethics warrant critique and reform, all too frequently social scientists offer ungrounded, exaggerated criticisms of bioethics. Anthropological and sociological critiques of bioethics are hampered by the tendency to equate bioethics with clinical ethics and moral theory in bioethics with principlist bioethics. Also, social scientists neglect the role of bioethicists in addressing organizational ethics and other “macro-social” concerns. If anthropologists and sociologists want to provide informed critiques of bioethics they need to draw upon research methods from their own fields and develop richer, more informed analyses of what bioethicists say and do in particular social settings.     

Law as Clinical Evidence: A New ConstitutiveModel of Medical Education and Decision-Making

Over several decades, ethics and law have been applied to medical education and practice in a way that reflects the continuation during the twentieth century of the strong distinction between facts and values. We explain the development of applied ethics and applied medical law and report selected results that reflect this applied model from an empirical project examining doctors’ decisions on withdrawing/withholding treatment from patients who lack decision-making capacity. The model is critiqued, and an alternative “constitutive” model is supported on the basis that medicine, medical law, and medical ethics exemplify the inevitable entanglement of facts and values. The model requires that ethics and law be taught across the medical education curriculum and integrated with the basic and clinical sciences and that they be perceived as an integral component of medical evidence and practice. Law, in particular, would rank as equal in normative authority to the relevant clinical scientific “facts” of the case, with graduating doctors having as strong a basic command of each category as the other. The normalization of legal knowledge as part of the clinician’s evidence base to be utilized in practice may provide adequate consolation for clinicians who may initially resent further perceived incursions on their traditional independence and discretion.     

THE VIRTUE ETHICS APPROACH TO BIOETHICS

This paper discusses the viability of a virtue‐based approach to bioethics. Virtue ethics is clearly appropriate to addressing issues of professional character and conduct. But another major remit of bioethics is to evaluate the ethics of biomedical procedures in order to recommend regulatory policy. How appropriate is the virtue ethics approach to fulfilling this remit? The first part of this paper characterizes the methodology problem in bioethics in terms of diversity, and shows that virtue ethics does not simply restate this problem in its own terms. However, fatal objections to the way the virtue ethics approach is typically taken in bioethics literature are presented in the second section of the paper. In the third part, a virtue‐based approach to bioethics that avoids the shortcomings of the typical one is introduced and shown to be prima facie plausible. The upshot is an inviting new direction for research into bioethics' methodology.