The concepts of disease, illness and sickness capture fundamentally different aspects of phenomena related to human ailments and healthcare. The philosophy and theory of medicine are making manifold efforts to capture the essence and normative implications of these concepts. In parallel, socio-empirical studies on patients’ understanding of their situation have yielded a comprehensive body of knowledge regarding subjective perspectives on health-related statuses. Although both scientific fields provide varied valuable insights, they have not been strongly linked to each other. Therefore, the (...) article aims to scrutinise the normative-ethical implications of patient perspectives in building a bridge to the empirical ethics debates. Three potential fields of tension between the illness and the disease perspective are presented. Consequently, findings from empirical research examining patient perspectives on illness are displayed and the practical implications and associated ethical issues which arise are discussed. This leads to the conclusion that an explicit and elaborate empirical-ethical methodology is needed to deal appropriately with the complex interaction between patients’ views and the medico-professional view of disease. Kon’s four-stage model of normative-empirical collaboration is then applied against the background of empirical data on patient perceptions. Starting from this exemplary approach, the article suggests employing empirical-ethical frameworks for further research on the conceptual and normative issues, as they help to integrate perspectives from the philosophy of medicine with socio-empirical research. The combination of theoretical and empirical perspectives suggested contributes to a more nuanced discussion of the normative impact of patients’ actual understanding of illness. Further empirical research in this area would profit from explicitly considering potential ethical issues to avoid naturalistic fallacies or crypto-normative conclusions that may compromise healthcare practice. Vice versa, medico-theoretical debates could be enriched by integrating subjective views of those people who are immediately affected. (shrink)

This paper responds to the commentaries from Stacy Carter and Alan Cribb. We pick up on two main themes in our response. First, we reflect on how the process of setting standards for empirical bioethics research entails drawing boundaries around what research counts as empirical bioethics research, and we discuss whether the standards agreed in the consensus process draw these boundaries correctly. Second, we expand on the discussion in the original paper of the role and significance of the concept of (...) ‘integrating’ empirical methods and ethical argument as a standard for research practice within empirical bioethics. (shrink)

ZusammenfassungEine wichtige Aufgabe empirischer Sozialforschung in der Medizinethik besteht darin, bisher unbekannte ethische Probleme zu identifizieren und zu beschreiben. Die Frage, welche Sachverhalte in den Gegenstandsbereich der Medizinethik fallen, ist jedoch sowohl aus wissenschaftlicher Sicht voraussetzungsreich als auch in der Praxis umstritten. Im Beitrag werden theoretische, methodologische und forschungspraktische Aspekte der Identifikation und Auswahl ethischer Probleme diskutiert und das Vorgehen am Beispiel einer konkreten empirisch-ethischen Studie illustriert. Der Schwerpunkt des Artikels liegt hierbei auf den Vorbedingungen sowie dem konkreten Vorgehen bei (...) der Integration von Laien- und Expertenperspektive. Im ersten Teil wird zunächst vorbereitend die Frage nach der Abgrenzung zwischen ethischen Problemen und anderen praktischen Herausforderungen adressiert. Dies geschieht unter Rückgriff auf die philosophisch-ethische Systematik sowie unter Berücksichtigung des stark praxisorientierten Charakters von Medizinethik. Anschließend wird ein Vorschlag zur Unterscheidung zweier Typen ethischer Probleme gemacht und die Frage nach der Definitionsmacht zur Auszeichnung ethischer Probleme auf den spezifischen Kontext empirisch-ethischer Forschung übertragen. Aufbauend auf diesen theoretischen Überlegungen wird im dritten Abschnitt des Beitrags schließlich ein Vorgehen zur Identifikation ethischer Probleme am Beispiel des ETHICO-Projektes als einer empirisch-ethischen Interventionsstudie im Bereich der Onkologie vorgestellt. Zusammenfassend vertritt der Beitrag die These, dass die Identifikation ethischer Probleme in der Medizin ein theoretisch komplexes und methodisch anspruchsvolles Unterfangen ist, bei dem nicht allein die Perspektive philosophischer Theorie eingenommen werden sollte, sondern vielmehr Formen der Integration von Laien- und Expertenperspektive entwickelt werden müssen. (shrink)

Insights from social science are increasingly used in the field of applied ethics. However, recent insights have shown that the empirical branch of business ethics lacks thorough theoretical grounding. This article discusses the use of the Rawlsian methods of wide reflective equilibrium and overlapping consensus in the field of applied ethics. Instead of focussing on one single comprehensive ethical doctrine to provide adequate guidance for resolving moral dilemmas, these Rawlsian methods seek to find a balance between considered judgments and intuitions (...) concerning particular cases on the one hand and general principles and theories on the other. In business ethics this approach is promissing because it enables decision-making in a pluralist context with different stakeholders who often endorse different or even conflicting cultural and moral frameworks without giving priority to any of them. Moreover, the method is well founded in political theory. A taxonomy of different kinds of applications is developed, and classified according to the purpose, the content, and the type of justification. On the basis of this taxonomy an inventory of 12 recent applications is made. In terms of the purpose and content of the method the applications are rather diverse. Two conceptual obstacles for applying Rawlsian methods are identified, viz. inclusiveness and the communitarian objection that people have to become detached from their personal life. It is found that methodological questions, such as the question how to retrieve the relevant empirical data, are scarcely addressed in the literature. To advance the use of empirical approaches in general, and that of Rawlsian approaches in particular, it is important not only to use empirical data but to use methodological insights from social sciences in order to further advance the field of empirical ethics. It is recommended that stakeholders be given a more active role in the assessment and justification of these methods. (shrink)

Empirical-ethical research constitutes a relatively new field which integrates socio-empirical research and normative analysis. As direct inferences from descriptive data to normative conclusions are problematic, an ethical framework is needed to determine the relevance of the empirical data for normative argument. While issues of normative-empirical collaboration and questions of empirical methodology have been widely discussed in the literature, the normative methodology of empirical-ethical research has seldom been addressed. Based on our own research experience, we discuss one aspect of this normative (...) methodology, namely the selection of an ethical theory serving as a background for empirical-ethical research. (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)

PurposeThe purpose of this paper is to introduce an interpretive approach to examining the relation between information and communication technologies (ICTs) and the good life, based on Michael Walzer's view of (connected) social criticism.Design/methodology/approachThrough a discussion of Michael Walzer's view of social criticism, an interpretive approach to normative analysis of ICTs and the good life is introduced. The paper also offers an additional argument for the indispensability of prudential appraisals of ICTs in normative analysis of ICTs and the good life, (...) which in turn strengthens the basis for the Walzerian approach proposed in the paper.FindingsIt is argued that an interpretive approach to normative analysis of ICTs and the good life, i.e. the Walzerian approach, is as viable as – if not superior to – a theory‐driven approach. It is also argued that actual appraisals of ICTs and the good life must be taken into account in the normative analysis.Originality/valueIt is only recently that “the good life” has become more visible in normative analysis of ICTs. This paper continues this relatively new line of research and proposes an alternative approach – as opposed to a theory‐driven approach – to this research programme. (shrink)

Empirical studies on people's moral attitudes regarding ethically challenging topics contribute greatly to research in medical ethics. However, it is not always clear in which ways this research adds to medical ethics as a normative discipline. In this article, we aim to provide a systematic account of the different ways in which attitudinal research can be used for normative reflection. In the first part, we discuss whether ethical judgements can be based on empirical work alone and we develop a sceptical (...) position regarding this point, taking into account theoretical, methodological and pragmatic considerations. As empirical data should not be taken as a direct source for normative justification, we then delineate different ways in which attitudes research can be combined with theoretical accounts of normative justification in the second part of the article. Firstly, the combination of attitudes research with normative-ethical theories is analysed with respect to three different aspects: The extent of empirical data which is needed, the question of which kind of data is required and the ways in which the empirical data are processed within the framework of an ethical theory. Secondly, two further functions of attitudes research are displayed which lie outside the traditional focus of ethical theories: the exploratory function of detecting and characterising new ethical problems, and the field of ‘moral pragmatics’. The article concludes with a methodological outlook and suggestions for the concrete practice of attitudinal research in medical ethics. (shrink)

This paper introduces the controversy surrounding active voluntary euthanasia and describes the legal position on euthanasia and assisted suicide in the UK. Findings from studies of the nurses' attitudes to euthanasia from the national and international literature are reviewed. There are acknowledged difficulties in carrying out research into attitudes to euthanasia and hence the review of findings from the published studies is followed by a methodological review. This methodological review examines the research design and data collection methods used in the (...) published studies, problems with understanding definitions of euthanasia and the measurement of attitudes. The paper concludes with a discussion of how research in this area may influence nursing practice. (shrink)

Our contribution proposes a philosophical and empirical analysis of emerging therapeutic education practices in the field of Parkinson’s disease, managed by deep brain stimulation (DBS). To this end, we mobilise the work on chronic illnesses of sociologists Anselm Strauss and Isabelle Baszanger. Through this conceptual and theoretical approach, the aim is to examine an hypothesis: Can the emerging offer of therapeutic education for Parkinson’s patients, managed by DBS, meet the requirement of a “recomposition” with a chronic degenerative disease whose management (...) remains continuous and life-long? A positive response to this assumption, supported in a second stage, leads us, in a third stage, to raise a limit: How far can we “negotiate” and “recompose” in the context of a disease, managed by a care that tends to increase the life expectancy of the patients and make the symptomatology evolve? Finally, a fourth stage highlights some (non-exhaustive) implications of these findings in ethical and political terms. (shrink)

Pedigree dog breeding has been the subject of public debate due to health problems caused by breeding for extreme looks and the narrow genepool of many breeds. Our research aims to provide insights in order to further the animal-ethical, political and society-wide discussion regarding the future of pedigree dog breeding in the Netherlands. Guided by the question ‘How far are we allowed to interfere in the genetic make-up of dogs, through breeding and genetic modification?’, we carried out a multi-method case-driven (...) research, reviewing literature as well as identifying the perceptions of pedigree dog breeding of a variety of parties in the Netherlands. We examined what moral arguments and concepts different stakeholders, including breeders, veterinarians and animal protection societies, put forward when considering this question. While welfare arguments were often used as a final justification, we also frequently encountered arguments beyond welfare in practice, in particular the arguments that certain adaptations were unnatural, that they instrumentalised animals, or that they amounted to playing God. We argue that the way these arguments are employed points to a virtue ethical approach, foregrounding the virtue of temperance, as a balance between extreme positions was sought by our respondents in a variety of ways. Moreover, we argue against a rejection of unnaturalness arguments based on the naturalistic fallacy, as philosophers tend to do. We point out that unnaturalness arguments are related to people’s worldviews, including views on the proper human–animal relationship. We argue that such arguments, which we label ‘life-ethical’, should be the subject of more public discussion and should not be relegated to the private sphere. (shrink)

Empirische Ethik ist ein relativ neues Vorgehen in der Ethikforschung, das vor allem in der Medizinethik angewandt wird. Dieser Beitrag bespricht die kennzeichnenden Charakteristika der empirischen Ethik und unterscheidet zwischen generalistischer und kontextualistischer empirischer Ethik. Zuerst werden verschiedene Beispiele beider Arten von empirischer Ethik vorgestellt, danach werden für beide Ansätze mögliche Schwachpunkte diskutiert. Die Schlussfolgerung des Beitrages besteht darin, dass das Entstehen der empirischen Ethik eine positive Entwicklung ist. Empirische Ethik sollte jedoch als eine Ergänzung der traditionellen philosophischen Medizinethik betrachtet (...) werden, und nicht als die bessere Alternative. (shrink)

Access to public healthcare services for Belgium’s undocumented migrants is regulated through a parallel, administrative procedure within the legal framework of Urgent Medical Aid. This imposes several constraints on their access to healthcare services. Drawing on empirical-ethical methodologies, we show how this procedure impacts on the relationship between patients with undocumented status and healthcare workers. We use the concept of relational autonomy to show how the imposed legal constraints reduce the formal treatment options available to healthcare workers, but simultaneously lead (...) to informal care practices, and how the latter increase the discretionary power of the healthcare workers. We argue that in this context, provision becomes unpredictable and arbitrary, with undocumented migrants tending to value strong personal relations with one particular, trusted healthcare worker. Although this leads to increased dependence, it also increases patients’ options and autonomy by providing access to wider professional networks attached to that healthcare worker. (shrink)

BackgroundThis study aims to quantitatively and qualitatively evaluate the activities of a Bioethics Unit (BU) 5 years since its implementation (2016–2020). The BU is a research unit providing empirical research on ethical issues related to clinical practice, clinical ethics consultation, and ethical education for health care professionals (HPS).MethodsWe performed an explanatory, sequential, mixed-method, observational study, using the subsequent qualitative data to explain the initial quantitative findings. Quantitative data were collected from an internal database and analyzed by descriptive analysis. Qualitative evaluation (...) was performed by semi-structured interviews with 18 HPs who were differently involved in the BU’s activities and analyzed by framework analysis.ResultsQuantitative results showed an extensive increment of the number of BU research projects over the years and the number of work collaborations with other units and wards. Qualitative findings revealed four main themes, concerning: 1. the reasons for contacting the BU and the type of collaboration; 2. the role of the bioethicist; 3. the impact of BU activities on HPs, in terms of developing deeper and more mature thinking; 4. the need to extend ethics support to other settings. Overall, our results showed that performing both empirical bioethics research and more traditional clinical ethics activities at the same unit would produce an impetus to increase collaboration and spread an 'ethical culture' among local HPs.ConclusionsOur findings contribute to a growing body of literature on the models of clinical ethics support services and the role of empirical research in bioethics internationally. They also prepare the ground for the implementation of a multidisciplinary Clinical Ethics Committee (CEC) that aims to support the BU’s ethics consultation service within the local context. (shrink)

Background Chemotherapy and/or radiotherapy treatments may cause premature ovarian failure and irreversible loss of fertility. In the context of childhood cancers, it is now acknowledged that possible negative effects of therapies on future reproductive autonomy are a major concern. While a few options are open to post-pubertal patients, the only immediate option currently open to pre-pubertal girls is cryopreservation of ovarian tissue and subsequent transplantation. The aim of the study was to address a current gap in knowledge regarding the offer (...) of fertility preservation by Ovarian Tissue Cryopreservation for prepubescent girls with cancer, and to explore current practices and attitudes of Canadian, French and Moroccan pediatric heme oncologists. The comparative perspective is relevant since legal frameworks surrounding fertility preservation and funding offered by the healthcare system vary greatly. Methods An online survey was sent to the 45 pediatric oncology centers in Canada, France and Morocco. Results A total of 39 centers responded. OTC is offered by almost all pediatric heme oncologists in France, very few in Canada, and none in Morocco. For pediatric hematologists/oncologists who do not propose fertility preservation in Canada, the reasons are: the technique is still experimental, it is not available locally and cost of the technique for the family. 97% of Canadian and 100% of Moroccan pediatric hematologists/oncologists think OTC should be funded by the healthcare system as it is in France and in the province of Quebec in Canada. Conclusions The results of this study show tremendous diversity in the provision of OTC across countries, whereby its offer is correlated with legislation and funding. We argue that the current reality, in which this technology is often not offered to families, raises ethical issues related to justice and equity of access, as well as informed consent and future reproductive autonomy. (shrink)

Despite the increased prevalence of bioethics research that seeks to use empirical data to answer normative research questions, there is no consensus as to what an appropriate methodology for this would be. This review aims to search the literature, present and critically discuss published Empirical Bioethics methodologies.

Recently, moral deliberation within care institutions is gaining more attention in medical ethics. Ongoing dialogues about ethical issues are considered as a vehicle for quality improvement of health care practices. The rise of ethical conversation methods can be understood against the broader development within medical ethics in which interaction and dialogue are seen as alternatives for both theoretical or individual reflection on ethical questions. In other disciplines, intersubjectivity is also seen as a way to handle practical problems, and methodologies have (...) emerged to deal with dynamic processes of practice improvement. An example is responsive evaluation. In this article we investigate the relationship between moral deliberation and responsive evaluation, describe their common basis in dialogical ethics and pragmatic hermeneutics, and explore the relevance of both for improving the quality of care. The synergy between the approaches is illustrated by a case example in which both play a distinct and complementary role. It concerns the implementation of quality criteria for coercion in Dutch psychiatry. (shrink)

One major challenge of the 21st century is the increasingly rapid development of new technologies and their evaluation. In this article we argue for an interdisciplinary approach to meet this demand for evaluating new and specifically bioinspired technologies. We combine the consideration of normative principles in the field of ethics with psychological-empirical research on attitudes. In doing so, the paper has a twofold concern: first, we discuss how such an interdisciplinary collaboration can be implemented by using the method of Cognitive-Affective (...) Mapping. Cognitive-Affective Maps (CAMs) enable a graphical representation of attitudes, including cognitive and affective aspects. Second, we argue that CAMs can be helpful to remedy the deficits of traditional ethical approaches. We applied CAMs in the context of an ethics seminar in which students were instructed to create CAMs based on bioinspired technologies twice – prior to the seminar to assess their evaluation on bioinspired technologies per se (pre-assessment) and after the seminar to assess how their evaluation might have changed and especially which normative ethical principles might have been additionally considered (post-assessment). As could be shown, CAMs can visualize the students’ attitudes, including the valence of ethical principles. Further, comparing pre- and post-CAMs indicated students’ attitude change. (shrink)

Background: Little is known about case managers’ ethical issues and professional values. Objectives: This article presents an overview of ethical issues in case managers’ current practice. Findings are examined in the light of nursing ethics, social work ethics and principle-based biomedical ethics. Research design: A systematic literature review was performed to identify and analyse empirical studies concerning ethical issues in case management programmes. It was completed by systematic content analysis of case managers’ national codes of ethics. Findings: Only nine empirical (...) studies were identified, eight of them from North America. The main dilemmas were how to balance system goals against the client’s interest and client protection against autonomy. Professional codes of ethics shared important similarities, but offered different responses to these two dilemmas. Discussion: We discuss the respective roles of professional and organizational ethics. Further lines of research are suggested. (shrink)

Life with chronic disease and chronic care is hard and people who live in disadvantage may lack the freedom to prioritise their care because of increased c.

Cross-border reproductive care (CBRC) can be defined as the movement from one jurisdiction to another for medically assisted reproduction (MAR). CBRC raises many ethical concerns that have been addressed extensively. However, the conclusions are still based on scarce evidence even considering the global scale of CBRC. Empirical ethics appears as a way to foster this ethical reflection on CBRC while attuning it with the experiences of its main actors. To better understand the ‘in and out’ situation of CBRC in Canada, (...) we conducted an ethnographic study taking a ‘critically applied ethics’ approach. This article presents a part of the findings of this research, obtained by data triangulation from qualitative analysis of pertinent literature, participant observation in two Canadian fertility clinics and 40 semidirected interviews. Based on participants’ perceptions, four themes emerged: (1) inconsistencies of the Canadian legal framework; (2) autonomy and the necessity to resort to CBRC; (3) safety and the management of CBRC individual risks; and (4) justice and solidarity. The interaction between these four themes highlights the problematic of ‘reproductive outsourcing’ that characterised the Canadian situation, a system where the controversial aspects of MAR are knowingly pushed outside the borders. (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)

The vulnerability of older hospital patients is increasingly understood in physical terms, often referred to as frailty. This reduces their vulnerability to the functioning body regardless of the psycho-socio-cultural context they are in, and it ignores the role of the hospital environment. This paper starts from a care ethical perspective on care and uses insights from empirical work that shows that hospitalization of older patients is characterized by experiences of uncertainty that give rise to feelings of vulnerability. This paper presents (...) a model that clarifies how vulnerability occurs in the interplay between the embodied subject, others, daily life and the hospital, and shows its dynamic and relational nature. Our complementary perspective of vulnerability is vital for nursing practice in that it starts from the situatedness of the older patient and not only points at what is missing but also at what is of significance to the older patient. Taking into account this perspective helps improving relational care. (shrink)

Der Einsatz empirischer Forschungsmethoden in der Medizinethik hat zu Forderungen nach einem gewandelten Selbstverständnis der Medizinethik geführt, die sich mehr als eine integrierte Disziplin aus Sozialwissenschaften und Ethik verstehen solle. Dagegen wird hier die These vertreten, dass über Sinn und Unsinn des Einsatzes empirischer Methoden zunächst eine moralphilosophische Diskussion erforderlich ist. Medizinethiker müssen ausweisen können, welche empirischen Forschungsresultate zur Beantwortung normativer Fragen erforderlich sind. Ein solcher Ausweis beruht seinerseits jedoch auf normativen Annahmen, die ihrerseits moralphilosophischer Legitimation bedürfen. Der Beitrag untersucht (...) daher den Einsatz empirischer Methoden in der Medizinethik im Hinblick auf Verhältnis von ethischem Grundlagendiskurs und Methodologie der angewandten Ethik. Abschließend wird gefragt, ob nicht ein Großteil von empirischen Studien in der Medizinethik aus forschungsethischen Gründen problematisch ist. (shrink)

Abstract:In this article, we present a pragmatic approach to neuroethics, referring back to John Dewey and his articulation of the “common good” and its discovery through systematic methods. Pragmatic neuroethics bridges philosophy and social sciences and, at a very basic level, considers that ethics is not dissociable from lived experiences and everyday moral choices. We reflect on the integration between empirical methods and normative questions, using as our platform recent bioethical and neuropsychological research into moral cognition, action, and experience. Finally, (...) we present the protocol of a study concerning teenagers’ morality in everyday life, discussing our epistemological choices as an example of a pragmatic approach in empirical ethics. We hope that this article conveys that even though the scope of neuroethics is broad, it is important not to move too far from the real life encounters that give rise to moral questions in the first place. (shrink)

This paper will critically examine the use of evidence in creating policy in the area of reproductive technologies. The use of evidence in health care and policy is not a new phenomenon. However, codified strategies for evidence appraisal in health care technology assessments and attempts to create evidence based policy initiatives suggest that the way evidence is used in practice and policy has changed. This paper will examine this trend by considering what is counted as ‘good’ evidence, difficulties in translating (...) evidence into policy and practice and how evidence interacts with principles. To illustrate these points the removal of gamete donor anonymity in the UK in 2005 and the debates that preceded this change in the law will be examined. It will be argued that evidence will only ever take us so far and attention should also be paid to the underlying principles that guide policy. The paper will conclude with suggestions for how underlying principles can be more rigorously used in policy formation. (shrink)

This paper aims to provide a description of how authors publishing in medical ethics journals have made use of empirical research data in papers on the topic of gamete or embryo donation by means of references to studies conducted by others. Rather than making a direct contribution to the theoretical methodological literature about the role empirical research data could play or should play in ethics studies, the focus is on the particular uses of these data and the problems that can (...) be encountered with this use. In the selection of papers examined, apart from being used to describe the context, empirical evidence was mainly used to recount problems that needed solving. Few of the authors looked critically at the quality of the studies they quoted, and several instances were found of empirical data being used poorly or inappropriately. This study provides some initial baseline evidence that shows empirical data, in the form of references to studies, are sometimes being used in inappropriate ways. This suggests that medical ethicists should be more concerned about the quality of the empirical data selected, the appropriateness of the choice for a particular type of data and the correct integration of this evidence in sound argumentation. Given that empirical data can be misused also when merely cited instead of reported, it may be worthwhile to explore good practice requirements for this type of use of empirical data in medical ethics. (shrink)

In this article we aim to assess the ethical desirability of self-test diagnostic kits for influenza, focusing in particular on the potential benefits and challenges posed by a new, mobile phone-based tool currently being developed by i-sense, an interdisciplinary research collaboration based at University College London and funded by the Engineering and Physical Sciences Research Council. Our study adopts an empirical ethics approach, supplementing an initial review into the ethical considerations posed by such technologies with qualitative data from three focus (...) groups. Overall, we map a range of possible considerations both for and against the use of such technologies, synthesizing evidence from a range of secondary literature, as well as identifying several new considerations previously overlooked. We argue that no single consideration marks these technologies as either entirely permissible or impermissible but rather tools which have the potential to incur certain costs and benefits, and that context is important in determining these. In the latter stages of the article, we explain how developers of such technologies might seek to mitigate such costs and reflect on the possible limitations of the empirical ethics method brought out during the study. Not applicable. (shrink)

Bioethical research has tended to focus on theoretical discussion of the principles on which the analysis of ethical issues in biomedicine should be based. But this discussion often seems remote from biomedical practice where researchers and physicians confront ethical problems. On the other hand, published empirical research on the ethical reasoning of health care professionals offer only descriptions of how physicians and nurses actually reason ethically. The question remains whether these descriptions have any normative implications for nurses and physicians? In (...) this article, we illustrate an approach that integrates empirical research into the formulation of normative ethical principles using the moral-philosophical method of Wide Reflective Equilibrium (WRE). The research method discussed in this article was developed in connection with the project ‘Bioethics in Theory and Practice’. The purpose of this project is to investigate ethical reasoning in biomedical practice in Denmark empirically. In this article, we take the research method as our point of departure, but we exclusively discuss the theoretical framework of the method, not its empirical results. We argue that the descriptive phenomenological hermeneutical method developed by Lindseth and Norberg (2004) and Pedersen (1999) can be combined with the theory of WRE to arrive at a decision procedure and thus a foundation for the formulation of normative ethical principles. This could provide health care professionals and biomedical researchers with normative principles about how to analyse, reason and act in ethically difficult situations in their practice. We also show how to use existing bioethical principles as inspiration for interpreting the empirical findings of qualitative studies. This may help researchers design their own empirical studies in the field of ethics. (shrink)

It is increasingly asserted that the disagreements of abstract principle between adversaries in the euthanasia debate fail to account for the complex, particular and ambiguous experiences of people at the end of their lives. A greater research effort into experiences, meaning, connection, vulnerability and motivation is advocated, during which the euthanasia 'question' should remain open. I argue that this is a normative strategy, which is felicitous to the status quo and further medicalises the end of life, but which masquerades as (...) a value-neutral assertion about needing more knowledge. (shrink)

Der Einsatz empirischer Forschungsmethoden in der Medizinethik hat zu Forderungen nach einem gewandelten Selbstverständnis der Medizinethik geführt, die sich mehr als eine integrierte Disziplin aus Sozialwissenschaften und Ethik verstehen solle. Dagegen wird hier die These vertreten, dass über Sinn und Unsinn des Einsatzes empirischer Methoden zunächst eine moralphilosophische Diskussion erforderlich ist. Medizinethiker müssen ausweisen können, welche empirischen Forschungsresultate zur Beantwortung normativer Fragen erforderlich sind. Ein solcher Ausweis beruht seinerseits jedoch auf normativen Annahmen, die ihrerseits moralphilosophischer Legitimation bedürfen. Der Beitrag untersucht (...) daher den Einsatz empirischer Methoden in der Medizinethik im Hinblick auf Verhältnis von ethischem Grundlagendiskurs und Methodologie der angewandten Ethik. Abschließend wird gefragt, ob nicht ein Großteil von empirischen Studien in der Medizinethik aus forschungsethischen Gründen problematisch ist. (shrink)

In the present paper, we focus on the role that the concept of geneticization has played in the discussion about health care, bioethics and society. The concept is discussed and examples from the evolving discourse about geneticization are critically analyzed. The relationship between geneticization, medicalization and biomedicalization is described, emphasizing how debates about the latter concepts can inspire future research on geneticization. It is shown how recurrent themes from the media coverage of genetics portray typical traits of geneticization and thus (...) contribute to the process. We look at examples of small-scale studies from the literature where geneticization of medical practice has been demonstrated. Methodological disputes about the relevance of empirical evidence for the geneticization thesis and the normative status of the concept are discussed. We consider arguments to the effect that ideas from mainstream bioethics have facilitated geneticization by emphasizing individualistic notions of autonomy and responsibility while ignoring the role of genetics in the wider social context. It is shown how a concept like geneticization, which can be used to draw the attention of philosophers, social scientists and others to challenges that tend to be neglected by mainstream bioethics, also has the potential to move people’s attention away from other pertinent issues. This may happen if researchers become preoccupied with the transformative effects of genetics, and we argue that a wider reading of geneticization should inspire critical analysis of the sociocultural preconditions under which genetics is currently evolving. (shrink)

Ethische Leitlinien für die klinische Praxis erfreuen sich zunehmender Beliebtheit. Damit klinisch-ethische Leitlinien aber überhaupt erfolgreich wirksam werden können, ist noch Pionierarbeit zu leisten. Solche Leitlinien müssen wissenschaftlich stärker fundiert und ihre praktische Anwendbarkeit muss verbessert werden. In dieser Arbeit werden die ersten Schritte des Projekts METAP zur methodischen Entwicklung und praktischen Implementierung einer Leitlinie für eine patientengerechte Versorgung am Krankenbett beschrieben und zur Diskussion gestellt. Das Projekt orientiert sich methodisch an der Entwicklung medizinischer Leitlinien und generiert damit eine forschungs- (...) und konsensgestützte Leitlinie, die systematischer Evaluation und Modifikation unterliegt und Rechenschaft über ihre wissenschaftliche Fundierung gibt. Zusätzlich zur Leitlinie bietet das Projekt in der Form eines Handbuchs ein Entscheidungsfindungsverfahren an, welches unter anderem deliberative Aspekte unterstützt. Das Handbuch konzentriert sich auf ethische Fragen der Mikroallokation und liefert darüber hinaus Informationen über empirische, ethische und rechtliche Grundlagen für Therapieentscheidungen. Anhand eines Eskalationsmodells können unterschiedliche Instrumente nach Bedarf als ethische Lösungsstrategien eingesetzt werden, von der Kurzfassung im Kitteltaschenformat („Leporello“) mit den wichtigsten Fakten, weiterführenden Texten und Empfehlungen mit normativen und prozeduralen Hinweisen, über stationsinterne Lösungsversuche bis hin zum Ethikkonsil. Klinische Partner sind von Beginn an aktiv in den Entwicklungsprozess eingebunden und verbessern so die Praxistauglichkeit und Akzeptanz sowie die Ausrichtung des Instrumentariums an den tatsächlichen Bedürfnissen. Dieses partnerschaftliche, partizipative Vorgehen scheint eine wichtige Voraussetzung dafür zu sein, dass METAP in der Klinik Fuß fassen konnte. (shrink)

Recently, ethical guidelines for clinical practice have gained increased popularity, but in order to become useful they require more pioneer’s work. Clinical-ethical guidelines need to be based on a scientific foundation and their practicability must be improved. We present and put to discussion the initial steps of the METAP Project about the development and practical implementation of a clinical-ethical guideline dedicated to a fair resource-allocation at the bedside. -/- With its methodological orientation, the project represents a guideline which is based (...) on both research and consensus-building, undergoing systematic evaluation and modification. In addition to the guideline, the project comes with a manual (a tool kit) including a procedural instrument for making decisions supporting deliberative aspects. It focuses on issues of micro-allocation; furthermore, it provides empirical, ethical and legal basics for making fair treatment decisions that should help to prevent overtreatment, undertreatment or discrimination in patient care. We propose an Escalation Model with various instruments serving as problem solving strategies that correspond to the respective needs; these instruments include a pocket-summary (“Leporello”) with the most important facts; further reading material; normative and procedural recommendations; ward-specific strategies, and also the option of clinical ethics consultation. -/- Clinical partners have been actively involved in the developmental process from the beginning and contributed to the practical applicability, acceptance and a valid need-orientation of the whole tool kit. This partnership and the participatory approach seem to have helped METAP to gain a foothold in the clinic. (shrink)

Empirische Ethik ist ein relativ neues Vorgehen in der Ethikforschung, das vor allem in der Medizinethik angewandt wird. Dieser Beitrag bespricht die kennzeichnenden Charakteristika der empirischen Ethik und unterscheidet zwischen generalistischer und kontextualistischer empirischer Ethik. Zuerst werden verschiedene Beispiele beider Arten von empirischer Ethik vorgestellt, danach werden für beide Ansätze mögliche Schwachpunkte diskutiert. Die Schlussfolgerung des Beitrages besteht darin, dass das Entstehen der empirischen Ethik eine positive Entwicklung ist. Empirische Ethik sollte jedoch als eine Ergänzung der traditionellen philosophischen Medizinethik betrachtet (...) werden, und nicht als die bessere Alternative. (shrink)

This paper describes the approach of empirical ethics, a form of ethics that integrates non-positivist ethnographic empirical research and philosophy. Empirical ethics as it is discussed here builds on the ‘empirical turn’ in epistemology. It radicalizes the relational approach that care ethics introduced to think about care between people by drawing in relations between people and technologies as things people relate to. Empirical ethics studies care practices by analysing their intra-normativity, or the ways of living together the actors within these (...) practices strive for or bring about as good practices. Different from care ethics, what care is and if it is good is not defined beforehand. A care practice may be contested by comparing it to alternative practices with different notions of good care. By contrasting practices as different ways of living together that are normatively oriented, suggestions for the best possible care may be argued for. Whether these suggestions will actually be put to practice is, however, again a relational question; new actors need to re-localize suggestions, to make them work in new practices and fit them in with local intra-normativities with their particular routines, material infrastructures, know-how and strivings. (shrink)

Time and communication are important aspects of the medical consultation. Physician behavior in real-life pediatric consultations in relation to ethical practice, such as informed consent (provision of information, understanding), respect for integrity and patient autonomy (decision-making), has not been subjected to thorough empirical investigation. Such investigations are important tools in developing sound ethical praxis.

The use of empirical research methods in bioethics has been increasing in the last decades. It has resulted in discussions about the ‘empirical turn of bioethics’ and raised questions related to the value of empirical work for this field, methodological questions about its quality and rigor, and how this integration of the normative and the empirical can be achieved. The aim of this paper is to describe the attitudes of bioethics researchers in this field towards the use of empirical research, (...) and examine their actual conduct: whether they use empirical research methods, and whether they have made attempts at integrating the empirical and the normative. An anonymous online survey was conducted to reach scholars working in bioethics/biomedical ethics/ethics institutes or centers in 12 European countries. A total of 225 bioethics researchers participated in the study. Of those, 200 questionnaires were fully completed, representing a response rate of 42.6%. The results were analysed using descriptive statistics. Most respondents indicated that they use or have used empirical methods in their work. A similar proportion of respondents reported having had at least some training in qualitative or quantitative methods, respectively. Among the ‘empirical researchers’, more than a fifth had not received any methodological training. It appears that only 6% or less of the ‘empirical researchers’ considered themselves experts in the methods that they have used. Only 35% of the scholars who have used empirical methods reported having integrated empirical data with normative analysis, whereas for their current projects, 59.8% plan to do so. There is a need to evaluate the current educational programs in bioethics and to implement rigorous training in empirical research methods to ensure that ‘empirical researchers’ have the necessary skills to conduct their empirical research in bioethics. Also imperative is clear guidance on the integration of the normative and the empirical so that researchers who plan to do so have necessary tools and competences to fulfil their goals. (shrink)

A review of literature published a decade ago noted a significant increase in empirical papers across nine bioethics journals. This study provides an update on the presence of empirical papers in the same nine journals. It first evaluates whether the empirical trend is continuing as noted in the previous study, and second, how it is changing, that is, what are the characteristics of the empirical works published in these nine bioethics journals. A review of the same nine journals was conducted (...) for a 12-year period from 2004 to 2015. Data obtained was analysed descriptively and using a non-parametric Chi-square test. Of the total number of original papers published in the nine bioethics journals, 18.1% collected and analysed empirical data. Journal of Medical Ethics and Nursing Ethics led the empirical publications, accounting for 89.4% of all empirical papers. The former published significantly more quantitative papers than qualitative, whereas the latter published more qualitative papers. Our analysis reveals no significant difference between the proportion of empirical papers published in 2004–2009 and 2010–2015. However, the increasing empirical trend has continued in these journals with the proportion of empirical papers increasing from 14.9% in 2004 to 17.8% in 2015. This study presents the current state of affairs regarding empirical research published nine bioethics journals. In the quarter century of data that is available about the nine bioethics journals studied in two reviews, the proportion of empirical publications continues to increase, signifying a trend towards empirical research in bioethics. The growing volume is mainly attributable to two journals: Journal of Medical Ethics and Nursing Ethics. This descriptive study further maps the still developing field of empirical research in bioethics. Additional studies are needed to completely map the nature and extent of empirical research in bioethics to inform the ongoing debate about the value of empirical research for bioethics. (shrink)