One of the challenges of modern healthcare ethics practice is the navigation of boundaries. Practicing healthcare ethicists in the performance of their role must navigate meanings, choices, decisions and actions embedded in complex cultural and social relationships amongst diverse individuals. In light of the evolving state of modern healthcare ethics practice and the recent move toward professionalization via certification, understanding boundary navigation in healthcare ethics practice is critical. Because healthcare ethics is endowed with many boundaries which often delineate concerns about (...) professional expertise and authority, epistemological reflection on the relationship between theory and practice points toward the social context as relevant to the conceptualization of boundaries. The skills of social scientists may prove helpful to provide data and insights into the conceptualization and navigation of clinical ethics qua profession. Empirical ethics research, which combines empirical description (usually social scientific) with normative-ethical analysis and reflection, is a way forward as we engage and reflect upon issues which have implications for practice standards and professionalization of the role. This requires cooperative engagement of the descriptive and normative disciplines to explore our understandings of boundaries in healthcare ethics practice. This will contribute to the ongoing reflection not only as we envision the professional role but to ensure that it is enacted in practice. (shrink)

A selection of recent sociological literature dealing with bioethics, concentrating particularly on its interface with research ethics, is reviewed to reveal that the two disciplines of bioethics and sociology have tendencies to approach subject matters from opposed perspectives. These differences in approach have now been generally recognized, accepted and accommodated by proponents of both disciplines. A turning point in the relationship between the two disciplines may have been reached which augers greater mutual respect, appreciation and even learning.

Hume's is/ought distinction has long limited the role of empirical research in ethics, saying that data about what something is cannot yield conclusions about the way things ought to be. However, interest in empirical research in ethics has been growing despite this countervailing principle. We attribute some of this increased interest to a conceptual breakdown of the is/ought distinction. MacIntyre, in reviewing the history of the is/ought distinction, argues that is and ought are not strictly separate realms but exist in (...) a close relationship that is clarified by adopting a teleological orientation. We propose that, instead of recovering a teleological orientation, society tends to generate its own goals via democratic methods like those described by Rousseau or adopt agnosticism about teleology such as described by Richard Rorty. In both latter scenarios, the distinction between is and ought is obscured, and the role for empirical research grows, but for controversial reasons. MacIntyre warns that the is/ought distinction should remain, but reminds ethicists to make careful arguments about when and why it is legitimate to move from is to ought. (shrink)

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. (shrink)

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. (shrink)

Social scientists often lament the fact that philosophically trained ethicists pay limited attention to the insights they generate. This paper presents an overview of tendencies in sociological and anthropological studies of morality, ethics and bioethics, and suggests that a lack in philosophical interest might be related to a tendency among social scientists to employ either a deficit model (social science perspectives accommodate the sense of context that philosophical ethics lacks), a replacement model (social scientists have finally found the “right way” (...) of doing ethics), or a dismissal model (ethics should be abandoned all together as a misconstrued veil of power). Increased awareness of differences in styles of reasoning and objects of research interest might help to overcome the hostility, and an anthropological project is presented as an invitation to a dialogue informed by awareness of such differences. (shrink)

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 into 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. (shrink)

Background The increase in empirical methods of research in bioethics over the last two decades is typically perceived as a welcomed broadening of the discipline, with increased integration of social and life scientists into the field and ethics consultants into the clinical setting, however it also represents a loss of confidence in the typical normative and analytic methods of bioethics. Discussion The recent incipiency of "Evidence-Based Ethics" attests to this phenomenon and should be rejected as a solution to the current (...) ambivalence toward the normative resolution of moral problems in a pluralistic society. While "evidence-based" is typically read in medicine and other life and social sciences as the empirically-adequate standard of reasonable practice and a means for increasing certainty, I propose that the evidence-based movement in fact gains consensus by displacing normative discourse with aggregate or statistically-derived empirical evidence as the "bottom line". Therefore, along with wavering on the fact/value distinction, evidence-based ethics threatens bioethics' normative mandate. The appeal of the evidence-based approach is that it offers a means of negotiating the demands of moral pluralism. Rather than appealing to explicit values that are likely not shared by all, "the evidence" is proposed to adjudicate between competing claims. Quantified measures are notably more "neutral" and democratic than liberal markers like "species normal functioning". Yet the positivist notion that claims stand or fall in light of the evidence is untenable; furthermore, the legacy of positivism entails the quieting of empirically non-verifiable considerations like moral claims and judgments. As a result, evidence-based ethics proposes to operate with the implicit normativity that accompanies the production and presentation of all biomedical and scientific facts unchecked. Summary The "empirical turn" in bioethics signals a need for reconsideration of the methods used for moral evaluation and resolution, however the options should not include obscuring normative content by seemingly neutral technical measure. (shrink)

Systems biology is the rapidly growing and heavily funded successor science to genomics. Its mission is to integrate extensive bodies of molecular data into a detailed mathematical understanding of all life processes, with an ultimate view to their prediction and control. Despite its high profile and widespread practice, there has so far been almost no bioethical attention paid to systems biology and its potential social consequences. We outline some of systems biology's most important socioethical issues by contrasting the concept of (...) systems as dynamic processes against the common static interpretation of genomes. New issues arise around systems biology's capacities for in silico testing, changing cultural understandings of life, synthetic biology, and commercialization. We advocate an interdisciplinary and interactive approach that integrates social and philosophical analysis and engages closely with the science. Overall, we argue that systems biology socioethics could stimulate new ways of thinking about socioethical studies of life sciences. (shrink)

This paper is a response to Henk ten Have's Genetics and Culture: The Geneticization thesis . In it, I refute Ten Have's suggestion that geneticization is not the sort of process that can be measured and commented on in terms of empirical evidence,even if he is correct in suggesting that it should be seen as part of ‘philosophical discourse’. At the end, I relate this discussion to broader debates within bioethics between the social science and philosophy, and suggest the need (...) for philosophical approaches to take the social sciences seriously. (shrink)

This essay offers a Jewish approach to ethnography in religious ethics. Following the work of other ethnographers working in religious ethics, I explore how an ethnographic account of reproductive ethics among Haredi Jewish women in Jerusalem enhances and improves Jewish ethical discourse. I argue that ethnography should become an integral part of Jewish ethics for three reasons. First, with a contextual approach to guidance and application of law and norms, an ethnographic approach to Jewish ethics parallels the way ethical decisions (...) are made on a daily basis in Jewish communities. Second, ethnography bolsters the voices of those involved in ethical discourse. Third, ethnography facilitates the bridge between local ethical questions and global ethical discourse. (shrink)

The relationship between sociology and bioethics has been an uneasy one. It has been described as contentious and adversarial, and at least some of the sociologists who have ventured into the territory of medical ethics report back on unfriendly natives. This bioethical ill will toward sociology is not without cause. Sociologists have been quite critical of what they call (with not-so-subtle pejorative overtones) the bioethical project.Two decades ago - when bioethics was just getting up on its organizational feet - Renée (...) Fox and Judith Swazey leveled the charge of cultural myopia against bioethics, noting that this myopia generally manifests itself in the form of systematic inattention to the social and cultural sources and implications of its own thought. They go on to sayifbioethics is an indicator of the general state of American ideas, values, and beliefs, of our collective self knowledge, and our understanding of other societies and cultures - then there is every reason to be worried about who we are, what we have become, and where we are going. (shrink)

This paper aims to make an empirically informed analytical contribution to the development of a more socially embedded bioethics. Drawing upon 10 interviews with cutting edge stem cell researchers (5 scientists and 5 clinicians) it explores and illustrates the ways in which the role positions of translational researchers are shaped by the ‘normative structures’ of science and medicine respectively and in combination. The empirical data is used to illuminate three overlapping themes of ethical relevance: what matters in stem cell research, (...) experimental treatment, and responsible claim making (as contrasted with ‘hype’. Finally, we suggest that this kind of ‘descriptive’ ethical analysis has potential relevance for understanding other substantive areas of stem cell ethics in practice, and we briefly consider the questions our analysis raises about role positions and ethical agency, and the implications for bioethics as a field of scholarship. (shrink)

Bioethics is a diverse field that accommodates a broad range of perspectives and disciplines. The recent explosion of literature on methods in interdisciplinary and empirical ethics might appear, however, to overshadow the fact that ‘bioethics’ has long been an interdisciplinary field. The Interdisciplinary and Empirical Ethics Network (IEEN) was established, with funding from the Wellcome Trust, to facilitate critical and constructive discussion around the nature of this disciplinary diversity and shift focus away from the ‘empirical turn’, towards the ongoing development (...) of bioethics as an evolving field of interdisciplinary study. In April 2012 the IEEN organized a workshop at the Centre for Public Policy Research, King's College London, dedicated to discussing the relationship between aims and methods in interdisciplinary and empirical bioethics. This paper reports on that first meeting. (shrink)

The relationship between sociology and bioethics has been an uneasy one. It has been described as contentious and adversarial, and at least some of the sociologists who have ventured into the territory of medical ethics report back on unfriendly natives. This bioethical ill will toward sociology is not without cause. Sociologists have been quite critical of what they call (with not-so-subtle pejorative overtones) the bioethical project.Two decades ago - when bioethics was just getting up on its organizational feet - Renée (...) Fox and Judith Swazey leveled the charge of cultural myopia against bioethics, noting that this myopia generally manifests itself in the form of systematic inattention to the social and cultural sources and implications of its own thought. They go on to sayifbioethics is an indicator of the general state of American ideas, values, and beliefs, of our collective self knowledge, and our understanding of other societies and cultures - then there is every reason to be worried about who we are, what we have become, and where we are going. (shrink)

Most of the literature on pharmacogenetics assumes that the main problems in implementing the technology will be institutional ones and that although it involves genetic testing, the ethical issues involved in pharmacogenetics are different from, even less than, ‘traditional’ genetic testing. Very little attention has been paid to how clinicians will accept this technology, their attitudes towards it and how it will affect clinical practice.This paper presents results from interviews with clinicians who are beginning to use pharmacogenetics and explores how (...) they view the ethics of pharmacogenetic testing, its use to exclude some patients from treatment, and how this kind of testing fits into broader debates around genetics. In particular this paper examines the attitudes of breast cancer and Alzheimer’s disease specialists. The results of these interviews will be compared with the picture of pharmacogenetics painted in the published literature, as a way of rooting this somewhat speculative writing in clinical practice. (shrink)

Objective: Contemporary ethical accounts of the patient-provider relationship emphasise respect for patient autonomy and shared decision making. We sought to examine the relative influence of involvement in decisions, confidence and trust in providers, and treatment with respect and dignity on patients’ evaluations of their hospital care.Design: Cross-sectional survey.Setting: Fifty one hospitals in Massachusetts.Participants: Stratified random sample of adults discharged from a medical, surgical, or maternity hospitalisation between January and March, 1998. Twelve thousand six hundred and eighty survey recipients responded.Main outcome (...) measure: Respondent would definitely be willing to recommend the hospital to family and friends.Results: In a logistic regression analysis, treatment with respect and dignity 3.4, 99% confidence interval 2.8 to 4.2) and confidence and trust in providers were more strongly associated with willingness to recommend than having enough involvement in decisions . Courtesy and availability of staff , continuity and transition , attention to physical comfort , and coordination of care were also significantly associated with willingness to recommend.Conclusions: Confidence and trust in providers and treatment with respect and dignity are more closely associated with patients’ overall evaluations of their hospitals than adequate involvement in decisions. These findings challenge a narrow emphasis on patient autonomy and shared decision making, while arguing for increased attention to trust and respect in ethical models of health care. (shrink)

Current approaches in bioethics largely overlook the multicultural social environment within which most contemporary ethical issues unfold. For example, principlists argue that the common morality of society supports four basic ethical principles. These principles, and the common morality more generally, are supposed to be a matter of shared common sense. Defenders of case-based approaches to moral reasoning similarly assume that moral reasoning proceeds on the basis of common moral intuitions. Both of these approaches fail to recognize the existence of multiple (...) cultural and religious traditions in contemporary multicultural societies. In multicultural settings, patients and their families bring many different cultural models of morality, health, illness, healing, and kinship to clinical encounters. Religious convictions and cultural norms play significant roles in the framing of moral issues. At present, mainstream bioethics fails to attend to the particular moral worlds of patients and their family members. A more anthropologically informed understanding of the ethical issues that emerge within health care facilities will need to better recognize the role of culture and religion in shaping modes of moral deliberation. (shrink)

The relationship between sociology and bioethics has been an uneasy one. It has been described as contentious and adversarial, and at least some of the sociologists who have ventured into the territory of medical ethics report back on unfriendly natives. This bioethical ill will toward sociology is not without cause. Sociologists have been quite critical of what they call the bioethical project. Two decades ago - when bioethics was just getting up on its organizational feet - Renée Fox and Judith (...) Swazey leveled the charge of cultural myopia against bioethics, noting that this myopia generally manifests itself in the form of systematic inattention to the social and cultural sources and implications of its own thought. They go on to say ifbioethics is an indicator of the general state of American ideas, values, and beliefs, of our collective self knowledge, and our understanding of other societies and cultures - then there is every reason to be worried about who we are, what we have become, and where we are going. (shrink)

ABSTRACT This article attempts to show a way in which social science research can contribute in a meaningful and equitable way to philosophical bioethics. It builds on the social science critique of bioethics present in the work of authors such as Renée Fox, Barry Hoffmaster and Charles Bosk, proposing the characteristics of a critical bioethics that would take social science seriously. The social science critique claims that traditional philosophical bioethics gives a dominant role to idealised, rational thought, and tends to (...) exclude social and cultural factors, relegating them to the status of irrelevancies. Another problem is the way in which bioethics assumes social reality divides down the same lines/categories as philosophical theories. Critical bioethics requires bioethicists to root their enquires in empirical research, to challenge theories using evidence, to be reflexive and to be sceptical about the claims of other bioethicists, scientists and clinicians. The aim is to produce a rigorous normative analysis of lived moral experience. (shrink)

Social scientists often lament the fact that philosophically trained ethicists pay limited attention to the insights they generate. This paper presents an overview of tendencies in sociological and anthropological studies of morality, ethics and bioethics, and suggests that a lack in philosophical interest might be related to a tendency among social scientists to employ either a deficit model (social science perspectives accommodate the sense of context that philosophical ethics lacks), a replacement model (social scientists have finally found the “right way” (...) of doing ethics), or a dismissal model (ethics should be abandoned all together as a misconstrued veil of power). Increased awareness of differences in styles of reasoning and objects of research interest might help to overcome the hostility, and an anthropological project is presented as an invitation to a dialogue informed by awareness of such differences. (shrink)

The consolidation of the interdisciplinary field of bioethics in Europe and in the United States was accompanied by harsh criticisms by the social sciences; criticisms that have endured and been reshaped from the late twentieth century until the present. This article begins with a critical discussion of the myopia detected in a bioethical thought that has systematically disregarded its origins, both cultural and social. I claim that this deficit could be rectified if social scientists, in general, and sociologists, in particular, (...) were to move away from the periphery, which they still occupy today, and take up a central position in the area of bioethics. In order to analyze the distant and controversial relationship between the social sciences and bioethics, I proceed to an analysis of their various approaches, respectively guided by descriptive and normative ethics. The specific intersection of sociologists with bioethical thought will be scrutinized, in accordance with an analytical continuum that illustrates an evolution from a collaborative position to a free and independent position adopted by the social scientists. The article concludes by presenting a suggestion regarding the integration of the sociological imagination in the processes of ethical deliberation on the moral problems that emerge in biomedical research and clinical practice. In this context, further epistemological reflection is invited regarding the influence of socio-cultural sources of morality relating to the manner in which such problems have been challenged by the bioethical imagination. (shrink)

Observers who note the increasing popularity of bioethics discussions often complain that the social sciences are poorly represented in discussions about things like abortion and stem-cell research. Critics say that bioethicists should be incorporating the methods and findings of social scientists, and should move towards making the discipline more empirically oriented. This way, critics argue, bioethics will remain relevant, and truly reflect the needs of actual people. Such recommendations ignore the diversity of viewpoints in bioethics, however. Bioethics can gain much (...) from the methods and findings from ethnographies and similar research. But it is misleading to suggest that bioethicists are unaware of this potential benefit. Not only that, bioethicists are justified in having doubts about the utility of the social science approach in some cases. This is not because there is some inherent superiority in non-empirical approaches to moral argument. Rather, the doubts concern the nature of the facts that the sciences would provide. Perhaps the larger point is that disagreements about the relationship between facts and normative arguments should be seen as part of the normal inquiry in bioethics, not evidence that reform is needed. (shrink)