Free and informed choice is an oft-acknowledged ethical basis for living kidney donation, including parental living kidney donation. The extent to which choice is present in parental living kidney donation has, however, been questioned. Since parents can be expected to have strong emotional bonds to their children, it has been asked whether these bonds make parents unable to say no to this donation. This article combines a narrative analysis of parents’ stories of living kidney donation with a philosophical discussion of (...) conditions for parental decision-making. Previous research has shown that parents often conclude that it is “natural” to donate. Our study shows that this naturalness needs to be understood as part of a story where parental living kidney donation is regarded as natural and as a matter of non-choice. Our study also highlights the presence of a parenthood moral imperative of always putting one’s child’s needs before one’s own. On the basis of these results, we discuss conditions for decision-making in the context of parental LKD. We argue that the presence of a parenthood moral imperative can matter with regard to the decision-making process when parents consider whether to volunteer as living kidney donors, but that it need not hamper choice. We emphasise the need for exploring relational and situational factors in order to understand parental decision-making in the context of parental LKD. (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)

Background Research is fundamental to improving the quality of health care. The need for regulation of research is clear. However, the bureaucratic complexity of research governance has raised concerns that the regulatory mechanisms intended to protect participants now threaten to undermine or stifle the research enterprise, especially as this relates to sensitive topics and hard to reach groups. Discussion Much criticism of research governance has focused on long delays in obtaining ethical approvals, restrictions imposed on study conduct, and the inappropriateness (...) of evaluating qualitative studies within the methodological and risk assessment frameworks applied to biomedical and clinical research. Less attention has been given to the different epistemologies underlying biomedical and qualitative investigation. The bioethical framework underpinning current regulatory structures is fundamentally at odds with the practice of emergent, negotiated micro-ethics required in qualitative research. The complex and shifting nature of real world settings delivers unanticipated ethical issues and (occasionally) genuine dilemmas which go beyond easy or formulaic ‘procedural’ resolution. This is not to say that qualitative studies are ‘unethical’ but that their ethical nature can only be safeguarded through the practice of ‘micro-ethics’ based on the judgement and integrity of researchers in the field. Summary This paper considers the implications of contrasting ethical paradigms for the conduct of qualitative research and the value of ‘empirical ethics’ as a means of liberating qualitative (and other) research from an outmoded and unduly restrictive research governance framework based on abstract prinicipalism, divorced from real world contexts and values. (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)

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)

Definition of the problem Medical ethics is increasingly faced with issues that result from power asymmetries and epistemic injustice. However, medical ethics lacks the epistemic lenses for analyzing these social context factors of clinical practice. A theoretical and conceptual reconfiguration is necessary in order to be able to address these issues. Arguments This paper discusses the foundations of critical medical ethics, which takes perspectives and epistemic categories from critical theories. This includes the Critical Theory of the Frankfurt School as well (...) as those approaches from social sciences and cultural studies that reflect on power asymmetries. By drawing on these theories, the epistemic spectrum of medical ethics could be broadened in order to better include real power relations into normative analyses. The paper starts by outlining the contribution of social sciences to empirical medical ethics. This shows that an empirical approach as such cannot bridge the epistemic gap. In a further step, epistemic lenses and concepts from critical theories are discussed, such as Critical Theory of the Frankfurt School, feminist approaches, postcolonial approaches, queer theory, gender studies, and science and technology studies (STS). The conclusion sums up the foundations of critical medical ethics and discusses its limitations. Conclusion Critical medical ethics possesses the epistemic categories and broader social perspective needed to address issues in medicine that result from power asymmetries and epistemic injustice in society. (shrink)

The role that need plays in dealing with problems of distributive justice is examined in a series of vignette studies. Among other things, it becomes clear that impartial observers make gradual assessments of justice that depend on the extent to which the observed individuals are endowed with a good. If it is known how high their need for that good is, the assessments are made relative to this reference point. In addition, impartial decision-makers make hypothetical distribution decisions that take into (...) account need, productivity, and accountability. The need of individuals is partially compensated even if they have contributed less to the available amount than they themselves require. However, the willingness to do so decreases if they are accountable for needing more than others or for having contributed less than others. Lastly, both impartial observers and impartial decision-makers distinguish between different types of needs, the fulfillment of which is given different levels of importance. (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)

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 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...

The moral status of sexbots was analyzed while using consequentialism and feminism as the guiding frameworks. Sexbots are humanoid robots with a certain level of AI that represents personality-scripts. The thesis contained three main questions: A) What moral pain points can be identified in producing and using sex bots? B) Is it necessary to conclude from these moral issues that these practices are inherently immoral? C) What ethical conditions and contexts can be formulated in which sex bots can be used (...) and used positively and morally? -/- First of all a brief summary is given on the psychology behind our relationships with robots/sexbots to show the weight of the dynamics behind this relationship between sexual subject and the sexual technology of sexbots. Second, The Campaign Against Sex Robots from Richardson was used as a starting point to explore a more contextual approach of the moral uses and designs of sexbots. The claims about what sexbots represent and what possible effects they have were analyzed to find an opening that does not a priori ban the production of sexbots (as Richardson postulates). -/- Through the thesis, tentative explorations of moral designs and uses of sexbots can be found. This includes an analysis on the hardware and software behind a sexbot going from scripts and programming concerning consent and designs that are meant for different (for example; therapeutical) contexts. To conclude, the use of a non-essentialistic feminist new-materialism was used for a first exploration of the political value of sexbots as tools of empowerment, instead of oppression. (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)

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)

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)

Digital media has become an integral part of people’s lives, and its ubiquity and pervasiveness in our everyday lives raise new ethical, social, cultural, political, economic and legal issues. Many of these issues have primarily been dealt with in terms of what is ‘right’ or ‘just’ with digital media and digitally-mediated practices, and questions about the relations between digital media and the good life are often left in the background. In short, what is often missing is an explicit discussion of (...) the relations between digital media and the good life. Under the label of ‘Net recommendation’, the present study aims to offer a balanced and constructive normative analysis of digital media, focusing on the relations between digital media and the good life. The project of Net recommendation aims to (re)assert the importance of actual discourses in our normative analysis of the relations between digital media and the good life. I pursue this project with a Walzerian approach to digital media and the good life that takes seriously (and, ideally, also interacts with) actual discourses. This approach allows us to have a better understanding of our normative judgements on the impacts of digital media has (or will have) on the good life and, at the same time, allows us to answer the question of ‘how should we live with digital media?’ more adequately. Moreover, the Walzerian approach is useful in both an intra-cultural and an inter¬cultural context. Using China’s Internet as a case study, I show that the relations between digital media and the good life in each culture should be examined in its own right. Together, I hope, this study provides an adequate illustration and defence of the project of Net recommendation that does not start with the assumption of digital media being a source of moral problem and strives to recommending specific ways to reform and/or transform digital media and digitally-mediated practices that allow us to have better relations with digital media and enable us to live better lives with them. (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)

While differentialists deny that non-linguistic animals can have a sense of justice, assimilationists credit some animals with such an advanced moral attitude. We approach this debate from a philosophical perspective. First, we outline the history of the notion of justice in philosophy and how various facets of that notion play a role in contemporary empirical investigations of justice among humans. On this basis, we develop a scheme for the elements of justice-relevant situations and for criteria of justice that should be (...) fruitful in studying both humans and animals. Furthermore, we investigate the conceptual connections between a sense of justice, on the one hand, and various other mental powers, on the other, and indicate which of the latter may be beyond the ken of animals. Next, we consider recent empirical research on justicerelated phenomena in animals. We argue for an intermediate position: While animals can at least in principle satisfy some preconditions of justice (intentional action, rulefollowing), others are problematic, notably possessing a notion of desert. A space for justice in social animals exists, yet it is rather limited compared to the rich cultures of justice in humans. Finally, we reflect on some actual or alleged implications of research on animal justice. As regards justice in humans, one should avoid a simplistic image of ‘‘natural justice’’ as boiling down to equal allocation of goods. As regards justice for animals, one should be weary of the contractualist assumption that only those capable of justice themselves are deserving of ‘‘just’’ treatment. (shrink)

The aim of this study was to explore the relational aspects of the consent process for HPV vaccination as experienced by school nurses, based on the assumption that individuals have interests related to persons close to them, which is not necessarily to be apprehended as a restriction of autonomy; rather as a voluntary and emotionally preferred involvement of their close ones. Thirty Swedish school nurses were interviewed in five focus groups, before the school based vaccination program had started in Sweden. (...) The empirical results were discussed in light of theories on relational autonomy. The school nurses were convinced that parental consent was needed for HPV vaccination of 11-year-old girls, but problems identified were the difficulty to judge when a young person is to be regarded as autonomous and what to do when children and parents do not agree on the decision. A solution suggested was that obtaining informed consent in school nursing is to be seen as a deliberative process, including the child, the parents and the nurse. The nurses described how they were willing strive for a dialogue with the parents and negotiate with them in the consent process. Seeing autonomy as relational might allow for a more dialogical approach towards how consent is obtained in school based vaccination programs. Through such an approach, conflicts of interests can be made visible and become possible to deal with in a negotiating dialogue. If the school nurses do not focus exclusively on accepting the individual parent’s choice, but strive to engage in a process of communication and deliberation, the autonomy of the child might increase and power inequalities might be reduced. (shrink)

Background Ethical challenges constitute an inseparable part of daily decision-making processes in all areas of healthcare. Ethical challenges are associated with moral distress that can lead to burnout. Clinical ethics support has proven useful to address and manage such challenges. This paper explores how prehospital emergency personnel manage ethical challenges. The study is part of a larger action research project to develop and test an approach to clinical ethics support that is sensitive to the context of emergency medicine. Methods We (...) explored ethical challenges and management strategies in three focus groups, with 15 participants in total, each attended by emergency medical technicians, paramedics, and prehospital anaesthesiologists. Focus groups were audio-recorded and transcribed verbatim. The approach to data analysis was systematic text condensation approach. Results We stratified the management of ethical challenges into actions before, during, and after incidents. Before incidents, participants stressed the importance of mutual understandings, shared worldviews, and a supportive approach to managing emotions. During an incident, the participants employed moral perception, moral judgments, and moral actions. After an incident, the participants described sharing ethical challenges only to a limited extent as sharing was emotionally challenging, and not actively supported by workplace culture, or organisational procedures. The participants primarily managed ethical challenges informally, often using humour to cope. Conclusion Our analysis supports and clarifies that confidence, trust, and safety in relation to colleagues, management, and the wider organisation are essential for prehospital emergency personnel to share ethical challenges and preventing moral distress turning into burnout. (shrink)

Digital contact tracing is used in different countries to help contain the COVID-19 pandemic. It raises challenging empirical and ethical questions due to its complexity and widespread effects calling for a broader approach in ethical evaluation. However, existing approaches often fail to include all relevant value perspectives or lack reference to empirical data on the artifact in question. In this paper, we describe the development of an interdisciplinary framework to analyze digital contact tracing from an empirical and ethical perspective. Starting (...) with an analysis of methodological tensions in the attempt to analyze digital contact tracing, we, firstly, set out three methodological premises regarding (a) a specific view of technology, (b) a fruitful normative perspective, and (c) ways to gather empirical knowledge about the object under investigation. Secondly, we inspect consequences of these premises to develop our research methodology. In doing so, we argue for a postphenomenological perspective on technology, solidarity as an important concept to guide the ethical perspective, and an empirical approach based on qualitative social science research and the concept of affordances. We illustrate these considerations by referring to our analysis of the German Corona-Warn-App as an instance of contact tracing based on the Exposure Notification Framework by Google and Apple. We then discuss the implications of using such a framework, including considerations concerning future developments of technologies similar to or inspired by the current concepts of contact tracing. (shrink)

BackgroundVascular surgery offers a range of treatments to relieve pain and ulcerations, and to prevent sudden death by rupture of blood vessels. The surgical procedures involve risk of injury and harm, which increases with age and frailty leading to complex decision-making processes that raise ethical questions. However, how vascular surgeons negotiate these questions is scarcely studied. The aim was therefore to explore vascular surgeons’ moral reasoning of what ought to be done for the patient.MethodsQualitative, semi-structured interviews were conducted with 19 (...) vascular surgeons working at three Swedish university hospitals. Data were analysed according to systematic text condensation.ResultsThe surgeons’ moral reasoning about what ought to be done comprised a quest to relieve suffering and avoid harm by exploring what is reasonable to do for the patient. Exploring reasonableness included to shift one´s perspective from the vessels to the whole person, to balance patient’s conflicting needs and to place responsibility for right decision on one´s shoulders. The shift from blood vessels to the whole person implied gaining holistic knowledge in pondering of what is best, struggling with one´s authority for surgery through dialogue, and building relationship for mutual security. To balance patient’s conflicting needs implied weighing the patient’s independence and a sense of being whole against ease of suffering, respecting the patient’s will against protecting life and well-being, and weighing longer life against protecting the present well-being. Finally, to place responsibility on one´s shoulders was conveyed as an urge to remind oneself of the risk of complications, withholding one’s power of proficiency, and managing time during the illness course.ConclusionsThis study contributes to uncovering how moral reasoning is embodied in the vascular surgeons’ everyday clinical discourse as a tangible part of their patient care. The results underpin the significance of moral considerations in the assemblage of medical knowledge and technical skills to further understand vascular surgeons’ clinical practice. The clinical application of these results is the need of forums with sufficient possibilities for articulating these important moral considerations in everyday care. (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)

Research ethics committees in Germany usually don’t have philosophers as members and if so, only contingently, not provided for by statute. This is interesting from a philosophical perspective, assuming that ethics is a discipline of philosophy. It prompts the question what role philosophers play in those committees they can be found in. Eight qualitative semi-structured interviews were conducted to explore the self-perception of philosophers regarding their contribution to research ethics committees. The results show that the participants generally don’t view themselves (...) as ethics experts. They are rather unanimous on the competencies they think they contribute to the committee but not as to whether those are philosophical competencies or applied ethical ones. In some cases they don’t see a big difference between their role and the role of the jurist member. In the discussion section of this paper I bring up three topics, prompted by the interviews, that need to be addressed: (1) I argue that the interviewees’ unwillingness to call themselves ethics experts might have to do with a too narrow understanding ofethics expertise. (2) I argue that the disagreement among the interviewees concerning therelationship between moral philosophy and applied ethicsmight be explained on a theoretical or on a practical level. (3) I argue that there is some lack of clarity concerning therelationship between ethics and lawin research ethics committees and that further work needs to be done here. All three topics, I conclude, need further investigation. (shrink)

In this paper, I will argue that making it mandatory to report research misconduct is too demanding, as this kind of intervention can at times be self-destructive for the researcher reporting the misconduct. I will also argue that posing the question as a binary dilemma masks important ethical aspects of such situations. In situations that are too demanding for individual researchers to rectify through reporting, there can be other forms of social control available. I will argue that researchers should explore (...) these. Finally, framing the issue as a question about the responsibilities of individual researchers masks the responsibilities of research institutions. Until institutions introduce measures that make this safe and effective, we should not consider reporting research misconduct mandatory. I will discuss this in light of both quantitative and qualitative data gathered as part of a survey in the PRINTEGER-project. (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)

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)

Introduction Patients require an accurate knowledge about placebos and their possible effects to ensure consent for placebo-controlled clinical trials is adequately informed. However, few previous studies have explored patients’ baseline levels of understanding and knowledge about placebos. The present online survey aimed to assess knowledge about placebos among patients with a history of back pain. Design A 15-item questionnaire was constructed to measure knowledge about placebos. Additional questions assessed sociodemographic characteristics, duration and severity of back pain, and previous experience of (...) receiving placebos. Setting Participants recruited from community settings completed the study online. Results 210 participants completed the questionnaire. 86.7% had back pain in the past 6 months, 44.3% currently had back pain. 4.3% had received a placebo intervention as part of a clinical trial and 68.1% had previously read or heard information about placebos. Overall knowledge of placebos was high, with participants on average answering 12.07 of 15 questions about placebos correctly. However, few participants correctly answered questions about the nocebo effect and the impact of the colour of a placebo pill. Conclusions The findings identified key gaps in knowledge about placebos. The lack of understanding of the nocebo effect in particular has implications for the informed consent of trial participants. Research ethics committees and investigators should prioritise amending informed consent procedures to incorporate the fact that participants in the placebo arm might experience adverse side effects. (shrink)

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

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)

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)

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)

Der 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)

Cases—be they real or fictional—are commonplace both in the medical ethics literature and in the public media. Cases take on a variety of forms: from streamlined to book length narratives. They also serve a variety of different purposes, from illustration, to decision making, and from debunking to heuristics. Drawing on the rhetorical analysis of « exemplum », I shall describe what cases are, and what their role is in the practice of clinical ethics. I identify two basic ways in which (...) cases can be brought to bear on ethical thinking and practice: a « tamed » and a « wild » way, and show how « wild cases » can serve a useful heuristic function despite their appeal to emotions and their unusual and striking character. In conclusion, I will argue that cases, both in their wild and their tamed form, are not only useful pedagogical tools, but can serve as a legitimate empirical basis for medical ethics. (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)

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)

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)

ZusammenfassungDer vorliegende Beitrag setzt sich mit der Frage nach angemessenen Methodologien und Methoden zur Erhebung und Integration empirischen Wissens in der Bio- und Medizinethik auseinander. Ausgehend von Überlegungen zum Haupt-Gegenstandsbereich der Ethik, dem Menschen als bio-psycho-sozialem Wesen und dessen Moral, wird argumentiert, dass die Sozialwissenschaften die zentralen empirischen Basiswissenschaften der Ethik darstellen. Im zweiten Abschnitt, der sich mit wissenschaftstheoretischen Überlegungen zum Verhältnis von Ethik, Empirie, Methodologien und Theorie und praktischen Beispielen der Integration empirischen Wissens befasst, wird nach den Ursachen für (...) das erkennbare Spannungsverhältnis zwischen Sozialwissenschaften, allgemeiner und angewandter Ethik gefragt, welches sich in der noch zu definierenden empirischen Ethik anders darstellt als in der traditionellen angewandten Ethik. Wie eine Bio- Ethik aussehen könnte, die diese Qualitätskriterien aufnimmt und in ihrem Feld fruchtbar macht, wird abschließend beschrieben. (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)

ZusammenfassungDer vorliegende Beitrag setzt sich mit der Frage nach angemessenen Methodologien und Methoden zur Erhebung und Integration empirischen Wissens in der Bio- und Medizinethik auseinander. Ausgehend von Überlegungen zum Haupt-Gegenstandsbereich der Ethik, dem Menschen als bio-psycho-sozialem Wesen und dessen Moral, wird argumentiert, dass die Sozialwissenschaften die zentralen empirischen Basiswissenschaften der Ethik darstellen. Im zweiten Abschnitt, der sich mit wissenschaftstheoretischen Überlegungen zum Verhältnis von Ethik, Empirie, Methodologien und Theorie und praktischen Beispielen der Integration empirischen Wissens befasst, wird nach den Ursachen für (...) das erkennbare Spannungsverhältnis zwischen Sozialwissenschaften, allgemeiner und angewandter Ethik gefragt, welches sich in der noch zu definierenden empirischen Ethik anders darstellt als in der traditionellen angewandten Ethik. Wie eine Bio-(psycho-soziale) Ethik aussehen könnte, die diese Qualitätskriterien aufnimmt und in ihrem Feld fruchtbar macht, wird abschließend beschrieben. (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)

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)

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)

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)

The world's aging populations face novel health challenges never experienced before in human history. The moral landscape thus needs to adapt to reflect this novel empirical reality. In this paper I take for granted one basic moral principle advanced by Peter Singer and explore the implications that empirical considerations from demography, evolutionary biology, and biogerontology have for the way we conceive of fulfilling this principle at the operational level. After bringing to the fore a number of considerations that Singer ignores, (...) such as the probability that nonintervention will result in harm and the likelihood that different kinds of extrinsic and intrinsic harms can be prevented, I argue that the aspiration to extend the human biological warranty period (by retarding the rate of aging) is a pressing moral imperative for the twenty-first century. In the final sections I briefly address some standard objections raised against life extension and conclude that, while there may be some legitimate concerns worth addressing, they are not compelling enough to provide a rational basis for forfeiting the potential health and economic benefits that could be realized by extending the biological warranty period. (shrink)

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)