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)

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)

Bioethics became applied ethics when it was assimilated to moral philosophy. Because deduction is the rationality of moral philosophy, subsuming facts under moral principles to deduce conclusions about what ought to be done became the prescribed reasoning of bioethics, and bioethics became a theory comprised of moral principles. Bioethicists now realize that applied ethics is too abstract and spare to apprehend the specificity, particularity, complexity and contingency of real moral issues. Empirical ethics and contextual ethics are needed to incorporate these (...) features into morality, not just bioethics. The relevant facts and features of problems have to be identified, investigated and framed coherently, and potential resolutions have to be constructed and assessed. Moreover, these tasks are pursued and melded within manifold contexts, for example, families, work and health care systems, as well as societal, economic, legal and political backgrounds and encompassing worldviews. This naturalist orientation and both empirical ethics and contextual ethics require judgment, but how can judgment be rational? Rationality, fortunately, is more expansive than deductive reasoning. Judgment is rational when it emanates from a rational process of deliberation, and a process of deliberation is rational when it uses the resources of non-formal reason: observation, creative construction, formal and informal reasoning methods and systematic critical assessment. Empirical ethics and contextual ethics recognize that finite, fallible human beings live in complex, dynamic, contingent worlds, and they foster creative, critical deliberation and employ non-formal reason to make rational moral judgments. (shrink)

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)

The introduction of new technologies in society is sometimes met with public resistance. Supported by public policy calls for “upstream engagement” and “responsible innovation,” recent years have seen a notable rise in attempts to attune research and innovation processes to societal needs, so that stakeholders’ concerns are taken into account in the design phase of technology. Both within the social sciences and in the ethics of technology, we see many interdisciplinary collaborations being initiated that aim to address tensions between various (...) normative expectations about science and engineering and the actual outcomes. However, despite pleas to integrate social science research into the ethics of technology, effective normative models for assessing technologies are still scarce. Rawls’s wide reflective equilibrium is often mentioned as a promising approach to integrate insights from the social sciences in the normative analysis of concrete cases, but an in-depth discussion of how this would work in practice is still lacking. In this article, we explore to what extent the WRE method can be used in the context of technology development. Using cases in engineering and technology development, we discuss three issues that are currently neglected in the applied ethics literature on WRE. The first issue concerns the operationalization of abstract background theories to moral principles. The second issue concerns the inclusiveness of the method and the demand for openness. The third issue is how to establish whether or not an equilibrium has been reached. These issues should be taken into account when applying the methods to real-world cases involving technological risks. Applying the WRE method in the context of engaged interdisciplinary collaboration requires sensitivity for issues of power and representativeness to properly deal with the dynamics between the technical and normative researchers involved as well as society at large. (shrink)

Empirical research into the ethics of emerging technologies, often involving foresight studies, technology assessment or application of the precautionary principle, raises significant epistemological challenges by failing to explain the relative epistemic status of contentious normative claims about future states. This weakness means that it is unclear why the conclusions reached by these approaches should be considered valid, for example in anticipatory ethical assessment or governance of emerging technologies. This paper explains and responds to this problem by proposing an account of (...) how the epistemic status of uncertain normative claims can be established in ethical and political discourses based on Jürgen Habermas’ discourse ethics. To better understand the nature of the problem, the relationship between norms, facts and the future is explored in light of potential meta-ethical fallacies faced in the field of empirical ethics. Weaknesses of current approaches to anticipatory ethical assessment and governance are then explored, including the Precautionary Principle and Technology Assessment. We argue that the epistemic status of uncertain normative claims can be understood within Habermas’ approach to political discourse, which requires ‘translation’ of uncertain claims to be comprehensible to other stakeholders in discourse. Translation thus provides a way to allow for uncertain normative claims to be considered alongside other types of validity claims in discourse. The paper contributes a conceptual account of the epistemic status of uncertain normative claims in discourse and begins to develop a ‘methodology of translation’ which can be further developed for approaches to research and ethical assessment supporting anticipatory evidence-based policy, governance and system design. (shrink)

BackgroundOur human societies and certainly also (bio) medicine are more and more permeated with technology. There seems to be an increasing awareness among bioethicists that an effective and comprehensive approach to ethically guide these emerging biomedical innovations into society is needed. Such an approach has not been spelled out yet for bioethics, while there are frequent calls for ethical guidance of biomedical innovation, also by biomedical researchers themselves. New and emerging biotechnologies require anticipation of possible effects and implications, meaning the (...) scope is not evaluative after a technology has been fully developed or about hypothetical technologies, but real-time for a real biotechnology.Main textIn this paper we aim to substantiate and discuss six ingredients that we increasingly see adopted by ethicists and that together constitute “ethics parallel research”. This approach allows to fulfil two aims: guiding the development process of technologies in biomedicine and providing input for the normative evaluation of such technologies. The six ingredients of ethics parallel research are: (1) disentangling wicked problems, (2) upstream or midstream ethical analysis, (3) ethics from within, (4) inclusion of empirical research, (5) public participation and (6) mapping societal impacts, including hard and soft impacts. We will draw on gene editing, organoid technology and artificial intelligence as examples to illustrate these six ingredients.ConclusionEthics parallel research brings together these ingredients to ethically analyse and proactively or parallel guide technological development. It widens the roles and judgements from the ethicist to a more anticipatory and constructively guiding role. Ethics parallel research is characterised by a constructive, rather than a purely critical perspective, it focusses on developing best-practices rather than outlining worst practice, and draws on insights from social sciences and philosophy of technology. (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)

AbstractBackgroundEthical challenges constitute an inseparable part of daily decision-making processes in all areas of healthcare. In prehospital emergency medicine, decision-making commonly takes place in everyday life, under time pressure, with limited information about a patient and with few possibilities of consultation with colleagues. This paper explores the ethical challenges experienced by prehospital emergency personnel. MethodsThe study was grounded in the tradition of action research related to interventions in health care. Ethical challenges were explored in three focus groups, each attended by (...) emergency medical technicians, paramedics, and prehospital anaesthesiologists. The participants, 15 in total, were recruited through an internal information network of the emergency services. Focus groups were audio-recorded and transcribed verbatim.ResultsThe participants described ethical challenges arising when clinical guidelines, legal requirements, and clinicians’ professional and personal value systems conflicted and complicated decision-making processes. The challenges centred around treatment at the end of life, intoxicated and non-compliant patients, children as patients—and their guardians, and the collaboration with relatives in various capacities. Other challenges concerned guarding the safety of oneself, colleagues and bystanders, prioritising scarce resources, and staying loyal to colleagues with different value systems. Finally, challenges arose when summoned to situations where other professionals had failed to make a decision or take action when attending to patients whose legitimate needs were not met by the appropriate medical or social services, and when working alongside representatives of authorities with different roles, responsibilities and tasks.ConclusionFrom the perspective of the prehospital emergency personnel, ethical challenges arise in three interrelated contexts: when caring for patients, in the prehospital emergency unit, and during external collaboration. Value conflicts may be identified within these contexts as well as across them. A proposed model of analysis integrating the above contexts can assist in shedding light on ethical challenges and value conflicts in other health care settings. The model emphasises that ethical challenges are experienced from a particular professional perspective, in the context of the task at hand, and in a particular, the organisational setting that includes work schedules, medical guidelines, legal requirements, as well as professional and personal value systems. (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)

Empirical bioethics is commonly understood as integrating empirical research with normative-ethical research in order to address an ethical issue. Methodological analyses in empirical bioethics mainly focus on the integration of socio-empirical sciences and normative ethics. But while there are numerous multidisciplinary research projects combining life sciences and normative ethics, there is few explicit methodological reflection on how to integrate both fields, or about the goals and rationales of such interdisciplinary cooperation. In this paper we will review some drivers for the (...) tendency of empirical bioethics methodologies to focus on the collaboration of normative ethics with particularly social sciences. Subsequently, we argue that the ends of empirical bioethics, not the empirical methods, are decisive for the question of which empirical disciplines can contribute to empirical bioethics in a meaningful way. Using already existing types of research integration as a springboard, five possible types of research which encompass life sciences and normative analysis will illustrate how such cooperation can be conceptualized from a methodological perspective within empirical bioethics. We will conclude with a reflection on the limitations and challenges of empirical bioethics research that integrates life sciences. (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)

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 30 years since its inception under the auspices of the National Human Genome Research Institute (NHGRI), the field devoted to examining the ethical, legal and social implications (ELSI) of g...

In the closed wards of mental health institutions, moral decisions are made concerning the use of forced seclusion. In this article we focus on how these moral decisions are made and can be improved. We present a case study concerning moral deliberations on the use of seclusion and its prevention among nurses of a closed mental health ward. Moral psychology provides an explanation of how moral judgments are developed through processes of interaction. We will make use of the Social Intuitionist (...) Model of Jonathan Haidt that emphasizes the role of emotions, intuitions and the social context in moral judgments and reasoning. We argue that this model can help to explain social dynamics in the context of enforced seclusion. In the discussion we explore how moral psychology can be complemented with the normative perspective of dialogical ethics to develop strategies for improving psychiatric practices. We conclude that social processes play an important role in moral deliberations and that moral development can be fostered by bringing in new perspectives in the dialogue. Moral case deliberation provides a practical tool to systematically organize moral reflections among nurses on the work floor. (shrink)

In “The Place of Philosophy in Bioethics Today,” Blumenthal-Barby and colleagues argue that philosophy is indispensable to the field of bioethics (Blumenthal-Barby et al. 2022). Nonetheless, they i...

Due to their non-hierarchical structure, socio-technical networks are prone to the occurrence of the problem of many hands. In the present paper an approach is introduced in which people’s opinions on responsibility are empirically traced. The approach is based on the Rawlsian concept of Wide Reflective Equilibrium (WRE) in which people’s considered judgments on a case are reflectively weighed against moral principles and background theories, ideally leading to a state of equilibrium. Application of the method to a hypothetical case with (...) an artificially constructed network showed that it is possible to uncover the relevant data to assess a consensus amongst people in terms of their individual WRE. It appeared that the moral background theories people endorse are not predictive for their actual distribution of responsibilities but that they indicate ways of reasoning and justifying outcomes. Two ways of ascribing responsibilities were discerned, corresponding to two requirements of a desirable responsibility distribution: fairness and completeness. Applying the method triggered learning effects, both with regard to conceptual clarification and moral considerations, and in the sense that it led to some convergence of opinions. It is recommended to apply the method to a real engineering case in order to see whether this approach leads to an overlapping consensus on a responsibility distribution which is justifiable to all and in which no responsibilities are left unfulfilled, therewith trying to contribute to the solution of the problem of many hands. (shrink)

Despite the bombardment of AI ethics frameworks (AIEFs) published in the last decade, it is unclear which of the many have been adopted in the industry. What is more, the sheer volume of AIEFs without a clear demonstration of their effectiveness makes it difficult for businesses to select which framework they should adopt. As a first step toward addressing this problem, we employed four different existing frameworks to assess AI ethics concerns of a real-world AI system. We compared the experience (...) of applying the AIEFs from the perspective of (a) a third-party auditor conducting an AI ethics risk assessment for the company, and (b) the company receiving the audit outcomes. Our results suggest that the feel-good factor of doing an assessment is common across the AIEFs that can take anywhere between 1.5 and 20 h to complete. However, each framework provides different benefits (e.g., issue discovery vs. issue monitoring) and is likely best used in conjunction with one another at different stages of an AI development process. As such, we call on the AI ethics community to better specify the suitability and expected benefits of existing frameworks to enable better adoption of AI ethics practice in the industry. (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)

Socially assistive devices such as care robots or companions have been advocated as a promising tool in elderly care in Western healthcare systems. Ethical debates indicate various challenges. An important part of the ethical evaluation is to understand how users interact with these devices and how interaction influences users’ perceptions and their ability to express themselves. In this review, we report and critically appraise findings of non-comparative empirical studies with regard to these effects from an ethical perspective.Electronic databases and other (...) sources were queried using a comprehensive search strategy generating 9851 records. Studies were screened independently by two authors. Methodological quality of studies was assessed. For 22 reports on 21 datasets using a non-comparative design a narrative synthesis was performed.Data shows positive findings in regard to attitudes and emotional reactions of users. Varying perception of a social relation and social presence are the most commonly observed traits of interaction. Users struggle with understanding technical complexities while functionality of the devices is limited. This leads to a behavioral alignment of users towards the requirements of the devices to be able to make use of them.This evidence adds to three important ethical debates on the use of socially assistive devices in healthcare in regard to (1) reliability of existing empirical evidence to inform normative judgements, (2) ethical significance of the social presence of devices and (3) user autonomy in regard to behavioral alignment. (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)

Für die Medizinethik liegt ein großes Potential sozialempirischer Forschung in der Erhöhung der Kontextsensitivität, dem Sichtbarmachen von sozialen und institutionellen Rollen und dem Einbringen von Stimmen, die bislang zu wenig gehört worden sind. Diese Möglichkeiten bergen jedoch auch das Risiko, dass Deliberation und Argumentation durch Umfragen und Meinungserhebungen ersetzt werden. Der in den Sozialwissenschaften einsetzende participatory turn gibt Anlass, Anliegen und Methoden klassischer sozialempirischer Vorgehensweisen aus normativer Sicht zu hinterfragen. Eine Auseinandersetzung mit Konzeptionen von Betroffenheit, Öffentlichkeit und Expertise ist nicht (...) nur aus methodologischen, sondern gerade auch aus normativen Gründen wichtig. Für die ethische Relevanz sind dabei die Idee der Argumentation und demokratietheoretische Überlegungen besonders erörterungswürdig. Wenn Bioethik Teil eines auch öffentlich verankerten Diskurses sein soll, ist die Frage nach der angemessenen Form der Berücksichtigung bestimmter Perspektiven ebenso im Kern bioethischer Reflexion zu verorten wie die Rechtfertigung spezieller ethischer Normen. (shrink)

The integration of normative analysis with empirical data often remains unclear despite the availability of many empirical bioethics methodologies. This paper sought bioethics scholars’ experiences and reflections of doing empirical bioethics research to feed these practical insights into the debate on methods. We interviewed twenty-six participants who revealed their process of integrating the normative and the empirical. From the analysis of the data, we first used the themes to identify the methodological content. That is, we show participants’ use of familiar (...) methods explained as “back-and-forth” methods (reflective equilibrium), followed by dialogical methods where collaboration was seen as a better way of doing integration. Thereafter, we highlight methods that were deemed as inherent integration approaches, where the normative and the empirical were intertwined from the start of the research project. Second, we used the themes to express not only how we interpreted what was said but also how things were said. In this, we describe an air of uncertainty and overall vagueness that surrounded the above methods. We conclude that the indeterminacy of integration methods is a double-edged sword. It allows for flexibility but also risks obscuring a lack of understanding of the theoretical-methodological underpinnings of empirical bioethics research methods. (shrink)

Researchers in applied ethics, and some areas of bioethics particularly, aim to develop concrete and appropriate recommendations for action in morally relevant real-world situations. When proceeding from more abstract levels of ethical reasoning to such concrete recommendations, however, even with regard to the very same normative principle or norm, it seems possible to develop divergent or even contradictory recommendations for action regarding a certain situation. This may give the impression that such recommendations would be arbitrary and, hence, not well justified. (...) Against this background, we, first, aim at showing that ethical recommendations for action, although being contingent in some sense, are not arbitrary if developed appropriately. For this purpose, we examine two types of contingencies arising in applied ethics reasoning based on recent examples of recommendations for action in the context of the COVID-19 pandemic. In doing so, we refer to a three-step model of ethical reasoning towards recommendations for actions. This, however, leaves open the question of how applied ethics may cope with contingent recommendations for action. Therefore, in a second step, we analyze the role of bridge principles for developing ethically appropriate recommendations for action, i.e., principles which connect normative claims with relevant empirical information to justify certain recommendations for action in a given morally relevant situation. Finally, we discuss some implications for reasoning and reporting in empirically informed ethics. (shrink)

Empirical moral psychology is sometimes dismissed as normatively insignificant because it plays no decisive role in settling ethical disputes. But that conclusion, even if it is valid for normative ethics, does not extend to bioethics. First, in contrast to normative ethics, bioethics can legitimately proceed from a presupposed moral framework. Within that framework, moral psychology can be shown to play four significant roles: it can improve bioethicists’ understanding of the decision situation, the origin and legitimacy of their moral concepts, efficient (...) options for implementing decisions, and how to change and improve some parts of their moral framework. Second, metaethical considerations suggest that moral psychology may lead to the radical revision of entire moral frameworks and thus prompt the radical revision of entire moral frameworks in bioethics. However, I show that bioethics must either relinquish these radical implications of moral psychology and accept that there are limits to progress in bioethics based on moral psychology or establish an epistemic framework that guides radical revision. (shrink)

According to some proponents of an empirical medical ethics, medical ethics should take the experience, insights, and arguments of doctors and other medical practitioners as their point of departure. Medical practitioners are supposed to have ‘moral wisdom.’ In this view, the moral beliefs of medical practitioners have a special status. In sections I-IV, I discuss two possible defences of such a status. The first defence is based on the special status of the moral beliefs of the health professional as an (...) expert in medical ethics, and the second defence on the special status of the health professional’s moral beliefs as a practitioner. The first defence is built up around the opposition between experts and laypersons, while the second defence rests on the opposition between practitioners and theorists. In sections V and VI, I examine the interrelations between empirical ethics and anti-theory in ethics. Some regard empirical ethics as a laudable alternative to theory-driven normative ethics. I explore their objections against ethical theory and ethical theorising, and conclude that they are not valid. In the last section, VII, I discuss the role of ethicists in medical practice. (shrink)

Background Research is crucial to improve treatment, survival and quality of life for children with cancer. However, recruitment of children for research raises ethical challenges. The aim of this study was to explore and describe ethical values and challenges related to the recruitment of children with cancer for research, from the perspectives and experiences of healthcare professionals in the Swedish context. Another aim was to explore their perceptions of research ethics competence in recruiting children for research. Methods An explorative qualitative (...) study using semi-structured interviews with key informants. Seven physicians and ten nurses were interviewed. Interviews were analysed using inductive qualitative content analysis. Results The respondents’ ethical challenges and values in recruitment mainly concerned establishing relationships and trust, meeting informational needs, acknowledging vulnerability, and balancing roles and interests. Ensuring ethical competence was raised as important, and interpersonal and communicative skills were highlighted. Conclusion This study provides empirical insight into recruitment of children with cancer, from the perspectives of healthcare professionals. It also contributes to the understanding of recruitment as a relational process, where aspects of vulnerability, trust and relationship building are important, alongside meeting informational needs. The results provide knowledge on the complexities raised by paediatric research and underpin the importance of building research ethics competence to ensure that the rights and interests of children with cancer are protected in research. (shrink)

Research ethics committees (RECs) have a crucial role in protecting children in research. However, studies on REC members’ perspectives on paediatric research are scarce. We conducted a qualitative study to explore Swedish scientific REC members’ perspectives on ethical aspects in applications involving children with severe health conditions. The REC members considered promoting participation, protecting children and regulatory adherence to be central aspects. The results underscored the importance of not neglecting ill children’s rights to adapted information and participation. REC members supported (...) a contextual and holistic approach to vulnerability and risk, which considers the child’s and parents’ psychological wellbeing and the child’s integrity, both short and long term. The ethical complexity of paediatric research requires continuous ethical competence development within RECs. (shrink)

BackgroundThe increasing debate on financial incentives for organ donation raises concerns about a "commodification of the human body". Philosophical-ethical stances on this development depend on assumptions concerning the body and how people think about it. In our qualitative empirical study we analyze public attitudes towards organ donation in their specific relation to conceptions of the human body in four European countries (Cyprus, Germany, the Netherlands and Sweden). This approach aims at a more context-sensitive picture of what "commodification of the body" (...) can mean in concrete clinical decisions concerning organ donation.ResultsWe find that moral intuitions concerning organ donation are rooted in various conceptions of the human body and its relation to the self: a) the body as a mechanical object owned by the self, b) the body as a part of a higher order embodying the self, and c) the body as a hierarchy of organs constitutive of the self.ConclusionThe language of commodification is much too simple to capture what is at stake in everyday life intuitions about organ donation and organ sale. We discuss how the plurality of underlying body-self conceptions can be taken into account in the ethical debate, pointing out consequences for an anthropologically informed approach and for a liberal perspective. (shrink)

The ongoing bioethical debate about organ markets rests not only on theoretical premises, but also on assumptions regarding public views of and attitudes toward organ donation that need closer socioempirical examination. Summarizing results from our previous qualitative social research in this field, this paper illustrates the ethical significance of such public moralities in two respects: On one hand, it analyzes the implicit bias of the common rhetoric of “organ scarcity” which motivates much of the commercialization debate. On the other hand, (...) it explores the blind spots of the paradigm of “altruistic donation” which informs many arguments against commercialization. We conclude that the ethical discourse has to appreciate the social nature of organ donation as a reciprocal interaction between different parties with irreducibly different but equally relevant viewpoints. We criticize the neglect of such well-founded public considerations in certain philosophical-ethical approaches and stress the need for further systematic and comparative socioempirical studies about peoples’ actual perspectives in bioethics. (shrink)

One of the reasons why GMOs have met public resistance in the past is that they are perceived as “unnatural”. The basis for this claim has, in part, to do with crossing species boundaries, which is considered morally objectionable. The emergence of CRISPR is sometimes argued to be an ethical game-changer in this regard since it does not require the insertion of foreign genes. Based on an empirical bioethics study including individual interviews and focus groups with laypeople and other stakeholders, (...) this article analyses the normative role of appeals to naturalness in discussions about the moral acceptability of using CRISPR in salmon farming. It discusses two dimensions of naturalness found in the material– living by species-specific nature and being unaffected by humans– and argues that these dimensions put down criteria for the application of CRISPR that lead to a conflict between our moral duties towards the farmed salmon and those we hold towards the wild salmon as a threatened species. It also points to a paradox which is likely to gain traction with further climate change and biodiversity loss, namely that while nature, understood as that which is unaffected by humans, is presented as an ideal, conserving nature in its pristine state may rely on technology and human intervention. (shrink)

ZusammenfassungDer Artikel greift die Überlegung auf, dass sich die Bioethik auch deshalb der empirischen Forschung zuwenden solle, um ihre Anwendbarkeit und Kontextsensitivität zu erhöhen. Am Beispiel der Norm, dass Schmerzen zu lindern seien, und mit Hilfe eines allgemeinen Modells ethischer Urteilsbildung werden verschiedene Bedeutungen der Anwendung und der Kontextsensitivität unterschieden und es wird untersucht, welche Rolle deskriptive Annahmen hierbei jeweils spielen können. Es wird die These vertreten, dass Kontextsensitivität in den meisten ihrer Bedeutungen von fundamentalethischen Grundannahmen unabhängig ist und dass (...) deskriptive Annahmen einen Prozess der Spezifikation ethischer Urteilsbildung auslösen, der in dieser Form nicht von der ethischen Begründung von Normen und Werten aus initiiert und antizipiert werden kann, jedoch zu seinem (zumindest vorübergehenden) handlungsorientierenden Abschluss auf diese zurückverwiesen ist. (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)

BackgroundHealth data-driven activities have become central in diverse fields (research, AI development, wearables, etc.), and new ethical challenges have arisen with regards to privacy, integrity, and appropriateness of use. To ensure the protection of individuals’ fundamental rights and freedoms in a changing environment, including their right to the protection of personal data, we aim to identify the ethical approaches adopted by scientists during intensive data exploitation when collecting, using, or sharing peoples’ health data.MethodsTwelve scientists who were collecting, using, or sharing (...) health data in different contexts in Sweden, were interviewed. We used systematic expert interviews to access these scientists’ specialist knowledge, and analysed the interviews with thematic analysis. Phrases, sentences, or paragraphs through which ethical values and norms were expressed, were identified and coded. Codes that reflected similar concepts were grouped, subcategories were formulated, and categories were connected to traditional ethical approaches.ResultsThrough several examples, the respondents expressed four different ethical approaches, which formed the main conceptual categories: consideration of consequences, respect for rights, procedural compliance, and being professional.ConclusionsTo a large extent, the scientists’ ethical approaches were consistent with ethical and legal principles. Data sharing was considered important and worth pursuing, even though it is difficult. An awareness of the complex issues involved in data sharing was reflected from different perspectives, and the respondents commonly perceived a general lack of practical procedures that would by default ensure ethical and legally compliant data collection and sharing. We suggest that it is an opportune time to move on from policy discussions to practical technological ethics-by-design solutions that integrate these principles into practice. (shrink)

In this paper, for the benefit of reflection processes in clinical and in local, regional, and national priority-setting, we aim to develop an ethical theoretical framework that includes both ethical principles and medium-range narratives. We present our suggestion in the particular case of having to choose between treatment interventions for attention deficit hyperactivity disorder (ADHD) and treatment interventions for other conditions or diseases, under circumstances of scarcity. In order to arrive at our model, we compare two distinct ethical approaches: a (...) generalist (principles) approach and a particularist (narratives) approach. Our focus is on Sweden, because in Sweden prioritization in healthcare is uniquely governmentally regulated by the “ethics platform.” We will present a (fictional) scenario to analyse the strengths and weaknesses of the generalist principled perspective of the ethics platform and the particularist perspective of narrative ethics. We will suggest an alternative (moderately particularist) approach to prioritization, which we dub a “principles plus medium-range narratives” approach. Notwithstanding the undeniably central role of principles in distributive justice, we claim that medium-range narratives concerning individuals or groups who stand to benefit or lose from ADHD prioritization practices should also be read or listened to and taken into account at all levels of priority-setting. These narratives are expected to ethically optimize clinical priority-setting, as well as that undertaken at local, regional, and national levels. (shrink)

Background: Enhancing client autonomy requires close coordination of interactional practices between nurse and client, which can cause challenges when interaction takes place in video-mediated settings. While video-mediated services have become more common, it remains unclear how they shape client autonomy in telehomecare. Research aim: To analyse how video mediation shapes client autonomy when nurses guide medicine taking remotely through video-mediated home care. Research design: This is a conversation analytic case study using video recordings of telehomecare encounters. The theoretical approach draws (...) on ethnomethodology and empirical ethics. Participants and research context: Four home-dwelling older adults and three nurses participated in the data collection; data extracts include one client and two nurses. The study was conducted in Finland. Ethical considerations: Special attention was given to protect the rights of home care clients. An ethical statement for the study was given by the Ethics Committee of the Tampere Region Findings: Video mediation complicates interacting remotely with care-relevant artefacts because of nurses’ limited visual access to the medicine and client’s need to simultaneously engage in vocal interaction and medicine taking. This can be overcome by dividing the guidance into manageable steps which invite the client to explicate their readiness to take the medicine and situating the video-mediation equipment and medicine close together. Different interactional practices and ways of situating video-mediation equipment and medicine have consequences for client autonomy. Discussion: Understanding client autonomy in digitalised settings demands empirical examination that recognises the importance of different human and non-human aspects of care that shape client autonomy. Conclusions: To harness the benefits of video-mediated home care, communication technologies’ reliance on home space and interactional practices should be recognised. Empirical ethics research is needed in order to make normative suggestions that fit a wide variety of care situation. (shrink)

Im Zuge des „empirical turn“ der Medizin- und Bioethik ist von verschiedenen Autoren in den vergangenen Jahren die Idee einer „evidenzbasierten Ethik“ diskutiert worden. Die Analogie zwischen evidenzbasierter Medizin und „evidenzbasierter Ethik“ soll in diesem Beitrag kritisch diskutiert und dabei gezeigt werden, dass der Ausdruck „evidenzbasierte Ethik“ irreführend ist. Zentraler Ausgangspunkt der Kritik ist die unterschiedliche Bedeutung, die empirische Informationen für das medizinisch-klinische Urteil zum einen und das ethische Urteil in der Medizin zum anderen haben. Im medizinisch-klinischen Urteil können mit (...) Hilfe empirischer Informationen hypothetische Handlungsnormen generiert werden, welche auf den der Medizin inhärenten Zwecksetzungen basieren. Bei Fragen der Ethik in der Medizin hingegen sind die Handlungsziele selbst Gegenstand des Urteils; diese aber können allein aus empirischem Wissen heraus nicht zureichend bestimmt werden. Die Diskussion um die Möglichkeit einer „evidenzbasierten Ethik“ eröffnet weiterhin aufschlussreiche Perspektiven in Bezug auf empirische Forschung und den Umgang mit empirischen Informationen in der Angewandten Ethik und das Aufgabenfeld der Medizinethik. (shrink)

ZusammenfassungIm Zuge des „empirical turn“ der Medizin- und Bioethik ist von verschiedenen Autoren in den vergangenen Jahren die Idee einer „evidenzbasierten Ethik“ diskutiert worden. Die Analogie zwischen evidenzbasierter Medizin und „evidenzbasierter Ethik“ soll in diesem Beitrag kritisch diskutiert und dabei gezeigt werden, dass der Ausdruck „evidenzbasierte Ethik“ irreführend ist. Zentraler Ausgangspunkt der Kritik ist die unterschiedliche Bedeutung, die empirische Informationen für das medizinisch-klinische Urteil zum einen und das ethische Urteil in der Medizin zum anderen haben. Im medizinisch-klinischen Urteil können mit (...) Hilfe empirischer Informationen hypothetische Handlungsnormen generiert werden, welche auf den der Medizin inhärenten Zwecksetzungen basieren. Bei Fragen der Ethik in der Medizin hingegen sind die Handlungsziele selbst Gegenstand des Urteils; diese aber können allein aus empirischem Wissen heraus nicht zureichend bestimmt werden. Die Diskussion um die Möglichkeit einer „evidenzbasierten Ethik“ eröffnet weiterhin aufschlussreiche Perspektiven in Bezug auf empirische Forschung und den Umgang mit empirischen Informationen in der Angewandten Ethik und das Aufgabenfeld der Medizinethik. (shrink)

In 2013 the Nuffield Council on Bioethics launched their report Novel Neurotechnologies: Intervening in the Brain. The report, which adopts the European Commission’s notion of Responsible Research and Innovation, puts forward a set of priorities to guide ethical research into, and the development of, new therapeutic neurotechnologies. In this paper, we critically engage with these priorities. We argue that the Nuffield Council’s priorities, and the Responsible Research and Innovation initiative as a whole, are laudable and should guide research and innovation (...) in all areas of healthcare. However, we argue that operationalising Responsible Research and Innovation requires an in-depth understanding of the research and clinical contexts. Providing such an understanding is an important task for empirical ethics. Drawing on examples from sociology, science and technology studies, and related disciplines, we propose four avenues of social science research which can provide such an understanding. We suggest that these avenues can provide a manifesto for empirical ethics. (shrink)

Fetal alcohol spectrum disorders is an umbrella term covering several conditions for which alcohol consumption during pregnancy is taken to play a causal role. The benefit of individuals being identified with a condition within FASD remains controversial. The objective of the present study was to identify ethical aspects and consequences of diagnostics, interventions, and family support in relation to FASD. Ethical aspects relating to diagnostics, interventions, and family support regarding FASD were compiled and discussed, drawing on a series of discussions (...) with experts in the field, published literature, and medical ethicists. Several advantages and disadvantages in regards of obtaining a diagnosis or description of the condition were identified. For instance, it provides an explanation and potential preparedness for not yet encountered difficulties, which may play an essential role in acquiring much needed help and support from health care, school, and the social services. There are no interventions specifically evaluated for FASD conditions, but training programs and family support for conditions with symptoms overlapping with FASD, e.g. ADHD, autism, and intellectual disability, are likely to be relevant. Stigmatization, blame, and guilt are potential downsides. There might also be unfortunate prioritization if individuals with equal needs are treated differently depending on whether or not they meet the criteria for a specific condition. The value for the concerned individuals of obtaining a FASD-related description of their condition – for instance, in terms of wellbeing – is not established. Nor is it established that allocating resources based on whether individuals fulfil FASD-related criteria is justified, compared to allocations directed to the most prominent specific needs. (shrink)

This article addresses an important, overlooked regulatory challenge during global health emergencies. It provides novel insights into how, and why, best practice can support decision makers in interpreting and implementing key guidance on conducting research during GHEs. The ability to conduct research before, during and after such events is crucial. The recent West-African Ebola outbreaks and the Zika virus have highlighted considerable room for improvement in meeting the imperative to research and rapidly develop effective therapies. A means of effectively capturing (...) these experiences and folding them into future decision-making is lacking; the need for effective practical translational measures remains. The challenge for the research community lies in extracting meaningful action-guiding content from pre-existing guidelines—which draw upon practical examples of guidelines ‘in action’—that assist in determining how to act in a particular situation. Insights are provided into the role of best practice as a means to do so; such examples can provide invaluable support to decision makers in interpreting high-level guidance; overarching guidelines retain their necessary level of generality and flexibility, whilst corresponding best practice examples—which incorporate important lessons learned—illustrate how such guidelines can be interpreted at a practical level. (shrink)

The article aims to provide a justification for the claim that optimal development and becoming an optimiser are educational ideals that parents should pursue in raising their children. Optimal development is conceptualised as enabling children to grow into flourishing persons, that is persons who have developed their given possibilities to the full and optimally fulfil the domains that can be said to be objectively good for all people. This also comprises the development of children into persons who want to become (...) optimisers and pursue excellent aims in life, i.e. who pursue ideals. Optimal development is not only an ideal, it requires ideals too. With excellent examples of the objective goods that are good for all people, children are given examples of what it means to strive for the best and are thereby enabled to develop themselves to the full. Two main points of critique, namely that it leads to elitism and to neurotic perfectionism are discussed and rebutted. This leads to a defence of a form of realistic perfectionism. The article ends with a description of the way in which parents could aspire towards the ideal aim of realistic perfectionism. (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)

A prominent trend in moral philosophy today is the interest in the rich textures of actual human practices and lives. This has prompted engagements with other disciplines, such as anthropology, history, literature, law and empirical science, which have produced various forms of contextual ethics. These engagements motivate reflections on why and how context is important ethically, and such metaethical reflection is what this article undertakes. Inspired by the work of the later Wittgenstein and the Danish theologian K.E. Løgstrup, I first (...) describe one of the ways in which context plays a central role with regard to ethical meaning and normativity. I then examine how ‘context’ is to be defined, and finally I discuss some of the questions which arise when giving context prominence in ethics – namely, how to delimit the scope of relevant context, the relevant traits of a particular context and what ‘the ethical’ is. (shrink)