This article provides a critical assessment of some aspects of Ann Kerr and Tom Shakespeare's Genetic Politics: from eugenics to genome. In particular, I evaluate their claims: (a) that bioethics is too ‘top down’, involving normative prescriptions, whereas it should instead be ‘bottom up’ and grounded in social science; and (b) that contemporary bioethics has not dealt particularly well with people's moral concerns about eugenics. I conclude that several of Kerr and Shakespeare's criticisms are well-founded and serve as valuable reminders (...) to the bioethics community. These include the claims: that bioethics ought not to consist entirely of applying moral theory to cases; that bioethics must take account of relevant empirical evidence; and that bioethicists should be on the look out for those subtle social forces which can undermine the voluntariness of people's choices and consents. However, we should reject some of Kerr and Shakespeare's other criticisms and I conclude (amongst other things) that even ‘mainstream’ bioethics is better able to deal with difficult issues like eugenics than Kerr and Shakespeare suggest. (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)

While every health care system stakeholder would seem to be concerned with obtaining the greatest value from a given technology, there is often a disconnect in the perception of value between a technology’s promoters and those responsible for the ultimate decision as to whether or not to pay for it. Adopting an empirical ethics approach, this paper examines how five Canadian medical device manufacturers, via their websites, frame the corporate “value proposition” of their innovation and seek to respond to what (...) they consider the key expectations of their customers. Our analysis shows that the manufacturers’ framing strategies combine claims that relate to valuable socio-technical goals and features such as prevention, efficiency, sense of security, real-time feedback, ease of use and flexibility, all elements that likely resonate with a large spectrum of health care system stakeholders. The websites do not describe, however, how the innovations may impact health care delivery and tend to obfuscate the decisional trade-offs these innovations represent from a health care system perspective. Such framing strategies, we argue, tend to bolster physicians’ and patients’ expectations and provide a large set of stakeholders with powerful rhetorical tools that may influence the health policy arena. Because these strategies are difficult to counter given the paucity of evidence and its limited use in policymaking, establishing sound collective health care priorities will require solid critiques of how certain kinds of medical devices may provide a better (i.e., more valuable) response to health care needs when compared to others. (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)

This article briefly reviews the various papers contained in this volume. They were originally presented at a research workshop held at Keele University in the UK in February 2003. It is suggested that the different papers raise a series of related legal, social and ethical issues and can be collectively seen to demonstrate the fact that policy formation in relation to reproductive matters is highly contested. It is concluded that ethical policy formation in this area needs to be based on (...) actual evidence of harm rather than assumed harm and that this therefore entails more empirical research into reproductive matters. (shrink)

In recent years, there has been a growing interest in finding stronger means of securitising identity against the various risks presented by the mobile globalised world. Biometric technology has featured quite prominently on the policy and security agenda of many countries. It is being promoted as the solution du jour for protecting and managing the uniqueness of identity in order to combat identity theft and fraud, crime and terrorism, illegal work and employment, and to efficiently govern various domains and services (...) including asylum, immigration and social welfare. In this paper, I shall interrogate the ways in which biometrics is about the uniqueness of identity and what kind of identity biometrics is concerned with. I argue that in posing such questions at the outset, we can start delimiting the distinctive bioethical stakes of biometrics beyond the all-too-familiar concerns of privacy, data protection and the like. I take cue mostly from Cavarero’s Arendt-inspired distinction between the “what” and the “who” elements of a person, and from Ricoeur’s distinction between the “idem” and “ipse” versions of identity. By engaging with these philosophical distinctions and concepts, and with particular reference to the example of asylum policy, I seek to examine and emphasise an important ethical issue pertaining to the practice of biometric identification. This issue relates mainly to the paradigmatic shift from the biographical story (which for so long has been the means by which an asylum application is assessed) to bio-digital samples (that are now the basis for managing and controlling the identities of asylum applicants). The purging of identity from its narrative dimension lies at the core of biometric technology’s overzealous aspiration to accuracy, precision and objectivity, and raises one of the most pressing bioethical questions vis-à-vis the realm of identification. (shrink)

ABSTRACT In keeping with the pre‐eminent status accorded autonomy within Australia, Europe, and the United States, medical practice requires that patients authorize do‐not‐resuscitate (DNR) orders, intended to countermand the default practice in hospitals of instituting cardiopulmonary‐resuscitation (CPR) on all patients experiencing cardio‐pulmonary arrest. As patients typically do not make these decisions proactively, however, family members are often asked to act as surrogate decision‐makers and decide on the patient's behalf. Although the appropriateness of patients or their families having to decide about (...) the provision of CPR has been challenged, there has been little examination of how patients and their families talk about and negotiate such decisions, particularly in the context of the patient's imminent death. In this article, part of a larger study analysing interviews with 28 patients (13 female) with cancer within weeks of their death, and 20 others (predominantly family) attending, we argue that a common assumption underpinning participants' talk about the DNR decision (i.e. forgoing CPR) is that it requires a choice between life and death. Using illustrative examples, we demonstrate that in making decisions about CPR, patients and their families are implicitly required to make moral judgements about the value of the patient's life, including their relationships with significant others. We identify some implications of these empirical observations for the development of ethically appropriate policies and practices regarding patient autonomy and surrogacy at the end of life. (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)

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)

Concern about the ethics of clinical drug trials research on patients and healthy volunteers has been the subject of significant ethical analysis and policy development—protocols are reviewed by Research Ethics Committees and subjects are protected by informed consent procedures. More recently attention has begun to be focused on DNA banking for clinical and pharmacogenetics research. It is, however, surprising how little attention has been paid to the commercial nature of such research, or the unique issues that present when subjects are (...) asked to consent to the storage of biological samples. Our contention is that in the context of pharmacogenetic add-on studies to clinical drug trials, the doctrine of informed consent fails to cover the broader range of social and ethical issues. Applying a sociological perspective, we foreground issues of patient/subject participation or ‘work’, the ambiguity of research subject altruism, and the divided loyalties facing many physicians conducting clinical research. By demonstrating the complexity of patient and physician involvement in clinical drug trials, we argue for more comprehensive ethical review and oversight that moves beyond reliance on informed consent to incorporate understandings of the social, political and cultural elements that underpin the diversity of ethical issues arising in the research context. (shrink)

The stipulation of living organ transplantation policy and practice in Bangladesh is family-oriented, with relatives being the only people legally eligible to donate organs. There have been very few transplantations of bone marrows, liver lobes, and kidneys from related-living donors in Bangladesh. The major question addressed in this study is why Bangladesh is not getting adequate organs for transplantation. In this study, I examin the stipulations of the policy and practice of living organ donation through the lens of 32 key (...) stakeholders including physicians and nurses, a health administrator, organ donors and recipients, and their family members, as they can shed light on the realities and problems of organ donation for transplantation in Bangladesh. My ethnography reveals that the family members are always encouraged to donate organs for transplantation, and saving the lives of relatives through organ donation is seen as a moral obligation. Many view saving the life of a relative by donating one’s organs as equivalent to saving one’s own life. An assessment of the dynamics of biomedicine, religion, and culture leads to the conclusion that the family-oriented organ donation policy and practice have been widely endorsed and accepted in Bangladesh, and Islamic ethical principles and collective family ethos undergird that policy and practice. However, the unavailability of medical resources, lack of post-operative coverage for organ donors, religious misconceptions and unawareness of the general public, and the absence of posthumously donated vital organs for transplantation are perceived to be the most common barriers to a successful living donor-recipient pair organ transplantation. By overcoming these obstacles, Bangladesh can develop a successful living donor-recipient pair organ transplantation program that will ensure improved healthcare outcomes, promote altruism and solidarity among Bangladeshi families, and protect the poor from having their organs sold to wealthy patients. (shrink)

With regard to organ donation, Germany is an ‘opt-in’ country, which requires explicit consent from donors. The relatives are either asked to decide on behalf of the donors’ preferences, if these are unknown or if the potential donor has explicitly transferred the decision to them. At the core of this policy lies the sociocultural and moral premise of a rational, autonomous individual, whose rights require legal protection in order to guarantee a voluntary decision. In concrete transplantation practices, the family plays (...) an even more important role. Potential donors and their families decide while being embedded in relations, a point which does still not gain full recognition. This particular discrepancy between policy and practice creates conflicts, which remain taboos of academic inquiry and public discourse. Our analysis shows a plurality of the family’s role in the transplantation process, which reveals an inner tension of the organ donation system. This tension provokes epistemic opacity on the one hand and different collective strategies as responses to discursive exclusion on the other. In future deliberations about organ donation, it is important to create spaces for open discussion, but also practices of communicative engagement, which take care of the needs and emotions attached to taboos. (shrink)

This article analyses and discusses dilemmas, ambivalences and problematic issues related to research ethics. This is done firstly by making a distinction between procedural research ethics and particularistic research ethics. Such a distinction reflects a theoretical construction and generalization. In practice, there can be a very close correlation between the two types. In the following, the distinction will therefore be used as a starting point for the presentation of a pragmatic-dualist research ethics. The approach is dualist because it draws on (...) the presence of two independent, contrasting understandings, which are essentially different yet equal aspects of good research ethics; it is pragmatic because this dualism is structural and institutional by nature, and designed with an eye to what can realistically and expediently be done in practice. Thus the intention of the article is to both analyze and discuss two different understandings of research ethics and simultaneously qualify a research ethics that draws on both of these understandings. Furthermore, the intention is to visualize a different understanding of research ethics which others can address and elaborate on or qualify. Even at this point, this research ethic can be included in a catalogue of understandings of ethical research practice an can be exploited in ethical research practice. (shrink)

Recent research on patient decision-making reveals a disconnect between theories of autonomy, agency, and decision-making and their practice in contemporary clinical encounters. This study examines these concepts in the context of female patients making oncofertility decisions in the United Kingdom in light of the phenomenon of “being guided.” Patients experience being guided as a way to cope with, understand, and defer difficult treatment decisions. Previous discussions condemn guided decision-making, but this research suggests that patients make an informed, autonomous decision to (...) be guided by doctors. Thus, bioethicists must consider the multifaceted ways that patients enact their autonomy in medical encounters. (shrink)

Når man går i gang med et forskningsprojekt, vil der typisk være nogle forskningsetiske problemstillinger, man skal forholde sig til. Det kan fx være, at man skal have indhentet informeret samtykkeerklæringer fra de deltagere, der skal være med, eller man skal have indhentet forskningsetiske tilladelser og godkendelser fra uafhængige instanser. Det er altså overvejelser, som typisk dukker op ved begyndelsen af et forskningsprojekt. Der kan efterfølgende være en risiko for, at man forsømmer refleksioner over emergerende etiske problemstillinger, og at forskningsetik (...) således reduceres til, at man som forsker har underskrevet og overholdt nogle prædefinerede retningslinjer for god forskningspraksis. Sådanne retningslinjer er naturligvis særdeles vigtige. Men det er pointen i denne artikel, at de ikke kan stå alene. Forskningsetiske dilemmaer er et epistemologisk vilkår gennem hele forskningsprocessen, og de må således overvejes og genovervejes, forhandles og genforhandles gennem hele forskningsprocessen. Den form for forskningsetik, der følger bestemte på forhånd fastlagte retningslinjer, som typisk er formuleret i standardiserede, kontekstuafhængige principper for god etisk adfærd, benævnes i artiklen procedural forskningsetik, mens en forskningsetik, der foretager en konkret og kontekstafhængig vurdering af de specifikke etiske problemstillinger og dilemmaer, som de viser sig i praksis gennem hele forskningsprocessen, benævnes kasuistisk forskningsetik. Distinktionen mellem disse to typer forskningsetik er udtryk for en teoretisk konstruktion, og de skal ikke betragtes som modsatrettede alternativer, men derimod som supplerende sider ved god forskningsetisk praksis. I artiklen diskuteres forholdet mellem dem for ad den vej at fremhæve enhver forskers pågående og kontinuerlige ansvar gennem hele forskningsprocessen. Nøgleord: forskningsetik, procedural, kasuistisk, Leibniz English summary: Dic cur hic – a casuistic research ethic When embarking on a research project, researchers must customarily confront some ethical issues. To begin with, they may need informed consent from the participants, or research ethics permission and approval from an independent Research Ethics Committee. However, there is more involved than these legal requirements alone, for just complying with some pre-defined guidelines for good research practice is by no means enough. In fact, a number of ethical issues demanding thorough reflection may emerge during the research project. Far from being neglected, such questions deserve careful attention. Research ethical dilemmas are an epistemological condition throughout the whole research process, and must therefore be constantly considered and reviewed, negotiated and renegotiated. This article purports to categorize the ethical issues likely to arise during the course of an investigation into two main types, namely procedural and casuistic. The kind of research ethics following certain pre-established guidelines, which are typically expressed in standardized, context-independent principles of good ethical behavior, will be labeled as procedural research ethics, while the type of research ethics ensuing from the analysis and contextual assessment of the specific dilemmas arising in practice in the particular situation studied, will be named casuistic research ethics. A distinction between these two types of research ethics reflects a theoretical construct. Both types should not be regarded as opposing alternatives, but as complementary aspects of good ethical research practices. This article discusses the relationship between the two types in order to highlight the researcher’s ongoing and continuous responsibility throughout the research process. (shrink)

This paper seeks to respond to some of the recent criticisms directed toward bioethics by offering a contribution to a “critical bioethics”. Here this concept is principally defined in terms of the three features of interdisciplinarity, self-reflexivity and the avoidance of uncritical complicity. In a partial reclamation of the ideas of V.R. Potter, it is argued that a critical bioethics requires a meaningful challenge to culture/nature dualism, expressed in bioethics as the distinction between medical ethics and ecological ethics. Such a (...) contesting of the “bio” in bioethics arrests its ethical bracketing of environmental and animal ethics. Taken together, the triadic definition of a critical bioethics offered here provides a potential framework with which to fend off critiques of commercial capture or of being “too close to science” commonly directed toward bioethics. (shrink)

This article provides a critical assessment of some aspects of Ann Kerr and Tom Shakespeare's Genetic Politics: from eugenics to genome. In particular, I evaluate their claims: (a) that bioethics is too ‘top down’, involving normative prescriptions, whereas it should instead be ‘bottom up’ and grounded in social science; and (b) that contemporary bioethics has not dealt particularly well with people's moral concerns about eugenics. I conclude that several of Kerr and Shakespeare's criticisms are well-founded and serve as valuable reminders (...) to the bioethics community. These include the claims: that bioethics ought not to consist entirely of applying moral theory to cases; that bioethics must take account of relevant empirical evidence; and that bioethicists should be on the look out for those subtle social forces which can undermine the voluntariness of people's choices and consents. However, we should reject some of Kerr and Shakespeare's other criticisms and I conclude (amongst other things) that even ‘mainstream’ bioethics is better able to deal with difficult issues like eugenics than Kerr and Shakespeare suggest. (shrink)

In this essay, I indicate how social-science approaches can throw light on predictive genetic testing (PGT) in various societal contexts. In the first section, I discuss definitions of various forms of PGT, and point out their inherent ambiguity and inappropriateness when taken out of an ideal–typical context. In section two, I argue further that an ethics approach proceeding from the point of view of the abstract individual in a given society should be supplemented by an approach that regards bioethics as (...) inherently ambiguous, contested, changeable and context-dependent. In the last section, I place these bioethical discussions of PGT in the context of Asian communities. Here, a critical view of what constitutes a community and culture proves necessary to understand the role of bioethical debates and the empirical manifestations of PGT in Asian societies. A discussion of the concepts of family and kinship in relation to PGT indicates that any bioethical analysis has to take into account that bioethical values are not just reflections of a cultural community, but embody both bioethical ideals and prevalent political rhetoric which is exhibited, propagated and manipulated by individuals and collectives for a variety of purposes. I end by summarising the contributions that social science could make to the understanding of the bioethics of PGT. (shrink)

BackgroundThis is the first qualitative study to investigate how researchers, who do empirical work in bioethics, relate to objectives of empirical research in bioethics (ERiB). We explore reasons that make some objectives more acceptable, while others are deemed less acceptable.MethodsUsing qualitative exploratory study design, we interviewed bioethics researchers, who were selected to represent different types of scholars working in the field. The interview data of 25 participants were analyzed in this paper using thematic analysis. ResultsFrom the eight objectives presented to (...) the study participants, understanding the context of a bioethical issue and identifying ethical issues in practice received unanimous agreement. Participants also supported other objectives of ERiB but with varying degrees of agreement. The most contested objectives were striving to draw normative recommendations and developing and justifying moral principles. The is-ought gap was not considered an obstacle to ERiB, but rather a warning sign to critically reflect on the normative implications of empirical results.ConclusionsOur results show that the most contested objectives are also the more ambitious ones, whereas the least contested ones focus on producing empirical results. The potential of empirical research to be useful for bioethics was mostly based on the reasoning pattern that empirical data can provide a testing ground for elements of normative theory. Even though empirical research can inform many parts of bioethical inquiry, normative expertise is recommended to guide ERiB. The acceptability of ambitious objectives for ERiB boils down to finding firm ground for the integration of empirical facts in normative inquiry. (shrink)

“Ethics” is used as a label for a new kind of expertise in the field of science and technology. At the same time, it is not clear what ethical expertise consists in and what its political status in modern democracies can be. Starting from the “participatory turn” in recent social research and policy, we will argue that bioethical reasoning has to include public views of and attitudes towards biomedicine. We will sketch the outlines of a bioethical conception of “public understanding (...) of ethics,” addressing three different issues: the methodological relevance of moral questions and problems raised by lay persons in everyday life regarding biomedicine and technology, the normative relevance of such lay moralities for the justification of ethical decisions, and the necessity of public deliberation in this context. Finally, we draw conclusions in view of the concepts and methods such a conception of “public understanding of ethics” should employ. (shrink)

In this paper I review empirical methods applied in recent analysis of decision-making on priorities in health care. I outline a number of discrete methods and discuss their applicability and efficacy in the field of bioethics. Three key methodological issues seem to be important: choice of subject group; choice of approach and the extent of background information given to respondents. I conclude that a combination method is needed to give a comprehensive representation of values in priority setting and thus to (...) meet the overall objectives of empirical ethics. (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)

This article is concerned with the role empirical research can play in normative practical ethics. There is no doubt that ethical research requires some kind of collaboration between normative disciplines and empirical sciences. But many researchers hold that empirical science is only assigned a subordinate role, due to the doctrine that normative conclusions cannot be justified by descriptive premises. Scientists working in the field of ethics commonly hold, however, that the empirical sciences should play a much bigger role in ethical (...) research. The aim of this paper is to show that empirical sciences can play a substantive role in normative ethics, with no illicit inferences from is to ought. To achieve this aim, I explain Hume’s thesis. In the following sections, I am concerned with different uses of empirical data that do not imply an illicit inference from descriptive premises to a normative conclusion. The article demonstrates that there are many modes of ethical reasoning that allow for a substantive use of empirical data, and it also shows the importance of Hume’s thesis for clarifying ethical reasoning. (shrink)

Research in the field of Empirical Ethics (EE) uses a broad variety of empirical methodologies, such as surveys, interviews and observation, developed in disciplines such as sociology, anthropology, and psychology. Whereas these empirical disciplines see themselves as purely descriptive, EE also aims at normative reflection. Currently there is literature about the quality of empirical research in ethics, but little or no reflection on specific methodological aspects that must be considered when conducting interdisciplinary empirical ethics. Furthermore, poor methodology in an EE (...) study results in misleading ethical analyses, evaluations or recommendations. This not only deprives the study of scientific and social value, but also risks ethical misjudgement. (shrink)

The professional and institutional responsibility for handling genetic knowledge is well discussed; less attention has been paid to how lay people and particularly people who are affected by genetic diseases perceive and frame such responsibilities. In this exploratory study we qualitatively examine the attitudes of lay people, patients and relatives of patients in Germany and Israel towards genetic testing. These attitudes are further examined in the national context of Germany and Israel, which represent opposite regulatory approaches and bioethical debates concerning (...) genetic testing. Three major themes of responsibility emerged from the inter-group and cross-cultural comparison: self-responsibility, responsibility for kin, and responsibility of society towards its members. National contrast was apparent in the moral reasoning of lay respondents concerning, for example, the right not to know versus the duty to know (self-responsibility) and the moral conflict concerning informing kin versus the moral duty to inform (responsibility for kin). Attitudes of respondents affected by genetic diseases were, however, rather similar in both countries. We conclude by discussing how moral discourses of responsibility are embedded within cultural (national, religious) as well as phenomenological (being affected) narratives, and the role of public engagement in bioethical discourse. (shrink)

There has been a great deal of discussion about the ethical implications of donating sperm and of the ways in which donated tissue is presented, selected, and sold for use in assisted reproduction. Debates have emerged within the academic sphere, from donor offspring and recipients, and in broader popular culture, including questions about the commodification of human tissue and the eugenic potential of selecting donors from particular demographic categories. However, the voices of donors themselves on this subject have been largely (...) silent. This paper draws on data from qualitative interviews with men who donated at a major Danish sperm bank between 2012 and 2013. It argues that many of them are indeed thinking through these complex issues. Donors’ approaches to ethical issues fell into two broad ‘types’: a pragmatic, individualistic approach which focused on more immediate personal consequences, and an ethically-driven approach in which donors considered the impact of donation on offspring and on a wider societal level. (shrink)

Whether sociology should be part of bioethics has been extensively debated and critiqued. Feminist bioethics has long recognized the role of empirical work in bioethical inquiry; however, much feminist work in bioethics has been sidelined due to critiques of the role of social and sociological theory in bioethics research. In this essay, I examine how sociology plays a much deeper role in bioethical inquiry beyond the contribution of empirical methods. Building on these approaches, I show, through a case study, how (...) social and sociological theory play as vital a role in conducting comprehensive bioethical inquiry as sociological methods and methodology, and thus should no longer be sidelined in empirical bioethics. (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)

BackgroundMedical ethics has recently seen a drive away from multiple prescriptive approaches, where physicians are inundated with guidelines and principles, towards alternative, less deontological perspectives. This represents a clear call for theory building that does not produce more guidelines. Phronesis (practical wisdom) offers an alternative approach for ethical decision-making based on an application of accumulated wisdom gained through previous practice dilemmas and decisions experienced by practitioners. Phronesis, as an ‘executive virtue’, offers a way to navigate the practice virtues for any (...) given case to reach a final decision on the way forward. However, very limited empirical data exist to support the theory of phronesis-based medical decision-making, and what does exist tends to focus on individual practitioners rather than practice-based communities of physicians.MethodsThe primary research question was: What does it mean to medical practitioners to make ethically wise decisions for patients and their communities? A three-year ethnographic study explored the practical wisdom of doctors (n = 131) and used their narratives to develop theoretical understanding of the concepts of ethical decision-making. Data collection included narrative interviews and observations with hospital doctors and General Practitioners at all stages in career progression. The analysis draws on neo-Aristotelian, MacIntyrean concepts of practice- based virtue ethics and was supported by an arts-based film production process.ResultsWe found that individually doctors conveyed many different practice virtues and those were consolidated into fifteen virtue continua that convey the participants’ ‘collective practical wisdom’, including the phronesis virtue. This study advances the existing theory and practice on phronesis as a decision-making approach due to the availability of these continua.ConclusionGiven the arguments that doctors feel professionally and personally vulnerable in the context of ethical decision-making, the continua in the form of a video series and app based moral debating resource can support before, during and after decision-making reflection. The potential implications are that these theoretical findings can be used by educators and practitioners as a non-prescriptive alternative to improve ethical decision-making, thereby addressing the call in the literature, and benefit patients and their communities, as well. (shrink)

In 2004 prenatal risk assessment was implemented as a routine offer to all pregnant women in Denmark. It was argued that primarily the new programme would give all pregnant women an informed choice about whether to undergo prenatal testing. On the basis of ethnographic fieldwork in an ultrasound clinic in Denmark and interviews with pregnant women and their partners, we call into question the assumption underlying the new guidelines that more choice and more objective information is a source of empowerment (...) and control. We focus on one couple's experience of PRA. This case makes it evident how supposed choices in the context of PRA may not be experienced as such. Rather, they are experienced as complicated processes of meaning-making in the relational space between the clinical setting, professional authority and the social life of the couples. PRA users are reluctant to make choices and abandon health professionals as authoritative experts in the face of complex risk knowledge. When assumptions about autonomy and self-determination are inscribed into the social practice of PRA, authority is transferred to the couple undergoing PRA and a new configuration of responsibility evolves between the couple and their relationship to the foetus. It is argued that al-though the new programme of prenatal testing in Denmark presents itself in opposition to quasi-eugenic and paternalistic forms of governing couples' decisions it represents another form of government that works through the notion of choice. An ethics of a shared responsibility of PRA and its outcome would be more in agreement with how decisions are actually made. (shrink)

This paper shows how critical realism can be used to integrate empirical data and philosophical analysis within ‘empirical bioethics’. The term empirical bioethics, whilst appearing oxymoronic, simply refers to an interdisciplinary approach to the resolution of practical ethical issues within the biological and life sciences, integrating social scientific, empirical data with philosophical analysis. It seeks to achieve a balanced form of ethical deliberation that is both logically rigorous and sensitive to context, to generate normative conclusions that are practically applicable to (...) the problem, challenge, or dilemma. Since it incorporates both philosophical and social scientific components, empirical bioethics is a field that is consistent with the use of critical realism as a research methodology. The integration of philosophical and social scientific approaches to ethics has been beset with difficulties, not least because of the irreducibly normative, rather than descriptive, nature of ethical analysis and the contested relation between fact and value. However, given that facts about states of affairs inform potential courses of action and their consequences, there is a need to overcome these difficulties and successfully integrate data with theory. Previous approaches have been formulated to overcome obstacles in combining philosophical and social scientific perspectives in bioethical analysis; however each has shortcomings. As a mature interdisciplinary approach critical realism is well suited to empirical bioethics, although it has hitherto not been widely used. Here I show how it can be applied to this kind of research and explain how it represents an improvement on previous approaches. (shrink)

Volume 20, Issue 4, May 2020, Page 80-82.

Clinical ethics consultation has developed from local pioneer projects into a field of growing interest among both clinicians and ethicists. What is needed are more systematic studies on the ethical challenges faced in clinical practice and problem solving through ethics consultation from interdisciplinary perspectives. The Thematic Issue covers a range of topics and includes five recent studies from various European countries and the USA, focusing on issues such as the ethical difficulties of end of life decisions, experiences with newly developed (...) or well established ethics consultation services, and the expectations of physicians in various clinical fields who are still unfamiliar with clinical ethics consultation. The papers included illustrate the interface between different socio-cultural contexts and their ways of dealing with clinical ethics consultation. They deepen the dialogue on clinical ethics consultation that has emerged at the European and International level. (shrink)

In 2004, prenatal risk assessment (PRA) was implemented as a routine offer in Denmark, in order to give all pregnant women an informed choice about whether to undergo prenatal testing. PRA is a non-invasive intervention performed in the first trimester of pregnancy and measures the risk of a fetus having Down's syndrome or other chromosomal disorders. The risk figure provides the basis for action, i.e. the decision about whether or not to undergo invasive fetal testing via the maternal route (amniocentesis (...) or chorionic villus sampling), which, however, involves the risk of inducing a miscarriage. On the basis of ethnographic fieldwork in an ultrasound clinic in Denmark and interviews with pregnant women and their partners, this paper investigates how ideals such as autonomy and non-directiveness are practised in processes of decision-making. We view such ideals as forming social practice rather than neutral instruments to reach a certain goal. Focusing on one couple's trajectory through the clinical practices of PRA and the process through which a decision is reached, we call into question the assumption that more choice and more objective information is a source of empowerment and control. We make evident how decisions are made through a complicated process of meaning-making, which emerges through the relationship between professionals, the clinical setting and the social life of the couples. In the face of complex risk knowledge, PRA users are reluctant to make choices and seek to re-install authority in the health professionals. However, when assumptions about autonomy and self-determination are inscribed into the social practice of PRA, authority is transferred to the couple undergoing PRA and a new configuration of responsibility evolves between the couple and their relationship to the fetus. It is argued that PRA performs a form of government that works not through compulsion or persuasion but through choice. An ethic of a shared responsibility for PRA and its outcome between pregnant women and health professionals would be more in agreement with how decisions are actually made. (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)

ABSTRACT The future development of bioethics has been discussed in a number of articles in recent years, principally with regard to the trend towards empirical studies. However, what is meant by empirical studies in this context and how it is to be used concretely have been subject to varying interpretations. The purpose of this article is to develop what we term the microethical approach as a concrete method for an empirically driven bioethics. By adopting a microethical perspective, we will illustrate (...) an analytical concept for describing and demonstrating how, as a result of contextual circumstances and forms of understanding, different individuals in their everyday life adopt different coping strategies and behavior patterns in relation to ethical values. From a deepened perspective, the complexity of human behavior becomes apparent, and knowledge is gained about how moral problems are perceived and construed by those whom they in fact affect. We intend first and foremost to develop the microethical methodology by elucidating the methods and approaches that can help in clarifying moral dilemmas on a microethical level, and how the relationship between the empirical material and the ethical analysis evolves over the course of the analysis. This is exemplified by a study of caregivers’ entrance into patients’ private lives through the provision of care and assistance in the home. (shrink)

In 2014, the first child in the world was born after live uterus transplantation and IVF (UTx-IVF). Before and after this event, ethical aspects of UTx-IVF have been discussed in the medical and bioethical debate as well as, with varying intensity, in Swedish media and political fora. This article examines what comes to be identified as important ethical problems and solutions in the media debate of UTx-IVF in Sweden, showing specifically how problems, target groups, goals, benefits, risks and stakes are (...) delineated and positioned. It also demonstrates how specific assumptions, norms and values are expressed and used to underpin specific positions within this debate, and how certain subjects, desires and risks become shrouded or simply omitted from it. This approach—which we label the Ethics of the Societal Entrenchment-approach, inspired by Koch and Stemerding (1994)—allows us to discuss how the identification of something as the problem helps to shape what gets to be described as a solution, and how specific solutions provide frameworks within which problems can be stated and emphasised. We also offer a critical discussion of whether some of these articulations and formations should be seen as ethically troubling, and if so, why. (shrink)

In this paper I will briefly discuss the role and function of the ethical advisory committees and other ethics bodies that are supposed to take care of the ethical dimension of the biotechnology strategies. The expert ethical advice has created colourful discussion in many contexts, but here I aim to analyze the role and relevance of ethical expertise in the context of national and regional biotechnology strategies. I will argue that it may be quite unproblematic that the work of the (...) ethics committees and other governmental and semi-governmental ethics bodies concerns only a relatively narrow range of issues and do not directly concern all the important social and economic realignments that accompany biotechnology. Many important decisions concerning national and regional biotechnology strategies are political, and typically ethics committees can be only indirectly useful in political decision-making. The committees should be free to refrain from extending their work to the areas where they are not already involved. However, the ethics committees and other ethics bodies can promote public debate that forms the basis for political decision-making. (shrink)

This paper reports from an ongoing multidisciplinary, ethnographic study that is exploring the views, values and practices (the ethical frameworks) drawn on by professional staff in assisted conception units and stem cell laboratories in relation to embryo donation for research purposes, particularly human embryonic stem cell (hESC) research, in the UK. We focus here on the connection between possible incidental findings and the circumstances in which embryos are donated for hESC research, and report some of the uncertainties and dilemmas of (...) our staff participants. We explore the views of our study participants in relation to two themes: (1) rights to information and anticipating how donors might be informed about future research findings and (2) occupational work goals and trust. (shrink)

“Ethics” is used as a label for a new kind of expertise in the field of science and technology. At the same time, it is not clear what ethical expertise consists in and what its political status in modern democracies can be. Starting from the “participatory turn” in recent social research and policy, we will argue that bioethical reasoning has to include public views of and attitudes towards biomedicine. We will sketch the outlines of a bioethical conception of “public understanding (...) of ethics,” addressing three different issues: (a) the methodological relevance of moral questions and problems raised by lay persons in everyday life regarding biomedicine and technology, (b) the normative relevance of such lay moralities for the justification of ethical decisions, and (c) the necessity of public deliberation in this context. Finally, we draw conclusions in view of the concepts and methods such a conception of “public understanding of ethics” should employ. (shrink)

Great hope has been placed on biobank research as a strategy to improve diagnostics, therapeutics and prevention. It seems to be a common opinion that these goals cannot be reached without the participation of commercial actors. However, commercial use of biobanks is considered morally problematic and the commercialisation of human biological materials is regulated internationally by policy documents, conventions and laws. For instance, the Council of Europe recommends that: “Biological materials should not, as such, give rise to financial gain”. Similarly, (...) Norwegian legislation reads: “Commercial exploitation of research participants, human biological material and personal health data in general is prohibited”. Both articles represent kinds of common moral intuitions. A problem, however, is that legislative documents are too vague and provide room for ample speculation. Through the use of focus group interviews with Norwegian biobank donors, we have tried to identify lay intuitions and morals regarding the commercial use of biobanks. Our findings indicate that the act of donation and the subsequent uses of the samples belong to two different spheres. While concerns around dignity and commodification were present in the first, injustice and unfairness were our informants’ major moral concerns in the latter. Although some opposition towards commercial actors was voiced, these intuitions show that it is possible to render commercial use of biobanks ethically acceptable based on frameworks and regulations which hinder commodification of the human body and promote communal benefit sharing. (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.

In this article we explore the contribution from social anthropology to the medical ethical debates about the use of informed consent in research, based on blood samples and other forms of tissue. The article springs from a project exploring donors’ motivation for providing blood and healthcare data for genetic research to be executed by a Swedish start-up genomics company. This article is not confined to empirical findings, however, as we suggest that anthropology provides reason to reassess the theoretical understanding of (...) autonomy as generally defined by Beauchamp and Childress. Careful consideration of the trust expressed by donors through the act of donation, furthermore, suggests that there is reason to redirect the ethical scrutiny from informed consent to issues concerning institutional arrangements and social responsibility. In particular, we suggest that an anthropological approach could facilitate a reconsideration of the political implications of using informed consent as a regulatory practice in tissue-based research. (shrink)

Recent weeks have seen an increased focus on the ethical response to the COVID-19 pandemic. Ethics guidance has proliferated across Britain, with ethicists and those with a keen interest in ethics in their professions working to produce advice and support for the National Health Service. The guiding principles of the pandemic have emerged, in one form or another, to favour fairness, especially with regard to allocating resources and prioritizing care. However, fairness is not equivalent to equity when it comes to (...) healthcare, and the focus on fairness means that existing guidance inadvertently discriminates against people from ethnic minority backgrounds. Drawing on early criticisms of existing clinical guidance (for example, the frailty decision tool) and ethical guidance in Britain, this essay will discuss the importance of including sociology, specifically the relationship between ethnicity and health, in any ethical and clinical guidance for care during the pandemic in the United Kingdom. To do otherwise, I will argue, would be actively choosing to allow a proportion of the British population to die for no other reason than their ethnic background. Finally, I will end by arguing why sociology must be a key component in any guidance, outlining how sociology was incorporated into the cross-college guidance produced by the Royal College of Physicians. (shrink)