BackgroundDuring the COVID-19 outbreak in 2020, national governments took restrictive measures, such as a visitors ban, prohibition of group activities and quarantine, to protect nursing home residents against infections. As ‘safety’ prevailed, residents and close relatives had no choice but to accept the restrictions. Their perspectives are relevant because the policies had a major impact on them, but they were excluded from the policy decisions. In this study we looked into the moral attitudes of residents, close relatives and volunteers regarding (...) the restrictions in retrospect, and what moral lessons they considered important.MethodsWe conducted 30 semi-structured interviews with residents and close relatives and one focus group meeting with volunteers working in nursing homes. Data were transcribed verbatim and analyzed inductively. Subsequently, three Socratic dialogue meetings with residents, close relatives and volunteers were organized in which first analysis outcomes were discussed and dialogues were fostered into moral lessons for future pandemics. Outcomes were combined with moral theory following an empirical bioethics design. ResultsCritical perspectives regarding the COVID-19 restrictions grew in time. Various moral values were compromised and steered moral lessons for our future. The participants recognized three moral lessons as most important. First, constructing tailored (well-balanced) solutions in practice is desirable. Second, proper recognition is needed for the caring role that close relatives fulfill in practice. Third, a responsive power distribution should be in place that includes all stakeholder perspectives who are affected by the restrictions. DiscussionComparing the results with moral theory strengthens the plea for inclusion of all stakeholder groups in decision-making processes. To further concretize the moral lessons, tailored solutions can be realized with the use of moral case deliberations. Proper recognition includes actions addressing moral repair and including counter-stories in the debate. Responsive power distribution starts with providing clear and trustworthy information and including all perspectives. (shrink)

Moral or ethical questions are vital because they affect our daily lives: what is the best choice we can make, the best action to take in a given situation, and ultimately, the best way to live our lives? Health ethics has contributed to moving ethics toward a more experience-based and user-oriented theoretical and methodological stance but remains in our practice an incomplete lever for human development and flourishing. This context led us to envision and develop the stance of a “living (...) ethics”, described in this inaugural collective and programmatic paper as an effort to consolidate creative collaboration between a wide array of stakeholders. We engaged in a participatory discussion and collective writing process known as instrumentalist concept analysis. This process included initial local consultations, an exploratory literature review, the constitution of a working group of 21 co-authors, and 8 workshops supporting a collaborative thinking and writing process. First, a living ethics designates a stance attentive to human experience and the role played by morality in human existence. Second, a living ethics represents an ongoing effort to interrogate and scrutinize our moral experiences to facilitate adaptation of people and contexts. It promotes the active and inclusive engagement of both individuals and communities in envisioning and enacting scenarios which correspond to their flourishing as authentic ethical agents. Living ethics encourages meaningful participation of stakeholders because moral questions touch deeply upon who we are and who we want to be. We explain various aspects of a living ethics stance, including its theoretical, methodological, and practical implications as well as some barriers to its enactment based on the reflections resulting from the collaborative thinking and writing process. (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...

The design and implementation of clinical ethics support is attracting increasing attention. Often, the characteristics and aims of clinical ethics support are translated into practice in a top-down, programmatic manner. These characteristics and aims then remain a constant feature of the clinical ethics support functions within the organisation. We argue that the characteristics of clinical ethics support should be reflected in the implementation strategy. Inspired by dialogical, pragmatic and hermeneutic perspectives on clinical ethics support in general and moral case deliberation (...) in particular, we argue for a dialogical approach to implementing clinical ethics support, based on open, ongoing discussion with healthcare professionals about how they conceive clinical ethics support. Based on research and experience with various moral case deliberation implementation projects in mental healthcare, we present a theoretical framework for dialogical implementation and heuristic guidelines for implementing moral case deliberation in mental healthcare, which take into account the dialogical characteristics of moral case deliberation and some specific features of mental healthcare. (shrink)

Moral case deliberation (MCD) is a form of clinical ethics support in which the ethicist as facilitator aims at supporting professionals with a structured moral inquiry into their moral issues from practice. Cases often affect clients, however, their inclusion in MCD is not common. Client participation often raises questions concerning conditions for equal collaboration and good dialogue. Despite these questions, there is little empirical research regarding client participation in clinical ethics support in general and in MCD in particular. This article (...) aims at describing the experiences and processes of two MCD groups with client participation in a mental healthcare institution. A responsive evaluation was conducted examining stakeholders’ issues concerning client participation. Findings demonstrate that participation initially creates uneasiness. As routine builds up and client participants meet certain criteria, both clients and professionals start thinking beyond ‘us-them’ distinctions, and become more equal partners in dialogue. Still, sentiments of distrust and feelings of not being safe may reoccur. Client participation in MCD thus requires continuous reflection and alertness on relational dynamics and the quality of and conditions for dialogue. Participation puts the essentials of MCD (i.e., dialogue) to the test. Yet, the methodology and features of MCD offer an appropriate platform to introduce client participation in healthcare institutions. (shrink)

Deliberative ways of dealing with ethical issues in health care are expanding. Moral case deliberation is an example, providing group-wise, structured reflection on dilemmas from practice. Although moral case deliberation is well described in literature, aims and results of moral case deliberation sessions are unknown. This research shows (a) why managers introduce moral case deliberation and (b) what moral case deliberation participants experience as moral case deliberation results. A responsive evaluation was conducted, explicating moral case deliberation experiences by analysing aims (...) (N = 78) and harvest (N = 255). A naturalistic data collection included interviews with managers and evaluation questionnaires of moral case deliberation participants (nurses). From the analysis, moral case deliberation appeals for cooperation, team bonding, critical attitude towards routines and nurses’ empowerment. Differences are that managers aim to foster identity of the nursing profession, whereas nurses emphasize learning processes and understanding perspectives. We conclude that moral case deliberation influences team cooperation that cannot be controlled with traditional management tools, but requires time and dialogue. Exchanging aims and harvest between manager and team could result in co-creating (moral) practice in which improvements for daily cooperation result from bringing together perspectives of managers and team members. (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 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)

Most contributions to the current debate about the consideration and application of empirical information in ethics scholarship deal with epistemological issues such as the role and the meaning of empirical research in ethical reasoning. Despite the increased publication of empirical data in ethics literature we still lack systematic analyses and conceptual frameworks that would help us to understand the rarely discussed methodological and practical problems in appraising empirical research. This paper demonstrates the need for critical appraisal and its crucial methodological (...) role in the application of empirical information in ethical reasoning. Furthermore, it systematically examines the criteria and the appropriate appraisal of empirical research and the associated challenges by highlighting current problems in empirical ethics literature. These problems reveal the following challenges for a critical and responsible consideration of empirical information in ethical reasoning: (i) training in the basic skills of locating and communicating empirical data from the relevant studies; (ii) training in basic knowledge of how to critically appraise empirical (qualitative and quantitative) research and its results; (iii) determination of quality standards for empirical ethics research; (iv) adequate reporting of the methodology and results of empirical ethics research in scientific journals. (shrink)

Ethics designates a structured process by which important human values and meanings of life are understood and tackled. Therein, the ability to discuss openly and reflect on (aka deliberation) understandings of moral problems, on solutions to these problems, and to explore what a meaningful resolution could amount to is highly valued. However, the indicators of what constitutes a high-quality ethical deliberation remain vague and unclear. This article proposes and develops a pragmatist approach to evaluate the quality of deliberation. Deliberation features (...) three important moments: (1) broadening and deepening the understanding of the situation, (2) envisioning action scenarios, (3) coming to a judgment based on the comparative evaluation of scenarios. In this paper, we propose seven criteria to evaluate ethical deliberations: (1) collaborative diversity, (2) experiential literacy, (3) organization of experiences, (4) reflective capacity to instrumentalize the experiences of others, (5) interactional creativity, (6) openness of agents, (7) quality of the reformulation of scenarios. These criteria are explained and applied to the three moments of deliberation. Based on these criteria, three kinds of outcomes for deliberations are identified and discussed: good ethical deliberations, partial ethical deliberations, bad ethical deliberations. Our proposal will guide researchers and practitioners interested in the evaluation of the quality of ethical deliberations. It provides a reference tool that allows them to identify the possible limitations of a deliberation and to implement actions aimed at correcting these limitations in order to achieve the desired qualitative objectives. (shrink)

Ethics consultation in institutions of the healthcare system has been given a standard form based on three pillars: education, the development of guidelines and concrete ethics consultation in case conferences. The spread of ethics committees, which perform these tasks on an organizational level, is a remarkable historic achievement. At the same time it cannot be denied that modern ethics consultation neglects relevant aspects of care ethics approaches. In our essay we present an “ethics of care” approach as well as an (...) empirical pilot project—“Ethics from the bottom up”—which organizes ethics consultation based on this focus. Findings and philosophy of the project will be discussed as far as relevant for ethics consultation in the healthcare system. (shrink)

In this paper we contribute to “sociology in bioethics” and help clarify the range of ways sociological work can contribute to ethics scholarship. We do this using a case study of an innovative neurotechnology, functional magnetic resonance imaging, and its use to attempt to diagnose and communicate with severely brain-injured patients. We compare empirical data from interviews with relatives of patients who have a severe brain injury with perspectives from mainstream bioethics scholars. We use the notion of an “ethical landscape” (...) as an analogy for the different ethical positions subjects can take—whereby a person’s position relative to the landscape makes a difference to the way they experience and interact with it. We show that, in comparison to studying abstract ethics “from above” the ethical landscape, which involves universal generalizations and global judgements, studying ethics empirically “from the ground,” within the ethical landscape foregrounds a more plural and differentiated picture. We argue it is important not to treat empirical ethics as secondary to abstract ethics, to treat on-the-ground perspectives as useful only insofar as they can inform ethics from above. Rather, empirical perspectives can illuminate the plural vantage points in ethical judgments, highlight the “lived” nature of ethical reasoning, and point to all ethical vantage points as being significant. This is of epistemic importance to normative ethics, since researchers who pay attention to the various positions in and trajectories through the ethical landscape are unlikely to think about ethics in terms of abstract agency—as can happen with top-down ethics—or to elide agency with the agency of policymakers. Moreover, empirical perspectives may have transformative implications for people on the ground, especially where focus on the potential harms and benefits they face brings their experiences and interests to the forefront of ethical and policy discussion. (shrink)

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

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

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)

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)

Addiction is a common condition affecting millions of people worldwide of which only a small proportion receives treatment. The development and use of healthcare services is influenced by how addiction is understood (e.g., a condition to treat, a shameful condition to stigmatize), notably with respect to how volition is impacted (e.g., addiction as a choice or a disease beyond one’s control). Through semi-structured qualitative interviews, we explore the implicit views and understandings of addiction and volition across three stakeholder groups: people (...) with lived experience of addiction, clinicians with experience treating addiction, and members of the public without lived experience of addiction. We notably examine whether three paradigms, i.e., three philosophical sets of understandings about the nature of reality and knowledge (realism, relativism, pragmatism) reflect how stakeholders envision addiction and volition in the context of addiction. The use of these paradigms allows for the characterization of different stances on addiction and volition and an assessment of the coherence of beliefs about these matters. Our findings demonstrate that few participants relied on a single epistemic paradigm when describing their views. Furthermore, there were notable differences in understandings of volition between the clinician group, who were more oriented toward pragmatism, and people with lived experience of addiction, who were less oriented toward realism. Despite its limitations, our study suggests that a greater appreciation for the complexity of views held by different stakeholders about addiction and volition could help critically assess the search for coherence expressed in academic and policy debates. (shrink)

Abstract:This article deals with the question as to what makes bioethics a critical discipline. It considers different senses of criticism and evaluates their strengths and weaknesses. A primary method in bioethics as a philosophical discipline is critical thinking, which implies critical evaluation of concepts, positions, and arguments. It is argued that the type of analytical criticism that restricts its critical role to critical thinking of this type often suffers from other intellectual flaws. Three examples are taken to demonstrate this: premature (...) criticism, uncritical self-understanding of theoretical assumptions, and narrow framing of bioethical issues. Such flaws can lead both to unfair treatment of authors and to uncritical discussion of topics. In this context, the article makes use of Häyry’s analysis of different rationalities in bioethical approaches and argues for the need to recognize the importance of communicative rationality for critical bioethics. A radically different critical approach in bioethics, rooted in social theory, focuses on analyses of power relations neglected in mainstream critical thinking. It is argued that, although this kind of criticism provides an important alternative in bioethics, it suffers from other shortcomings that are rooted in a lack of normative dimensions. In order to complement these approaches and counter their shortcomings, there is a need for a bioethics enlightened by critical hermeneutics. Such hermeneutic bioethics is aware of its own assumptions, places the issues in a wide context, and reflects critically on the power relations that stand in the way of understanding them. Moreover, such an approach is dialogical, which provides both a critical exercise of speech and a normative dimension implied in the free exchange of reasons and arguments. This discussion is framed by Hedgecoe’s argument that critical bioethics needs four elements: to be empirically rooted, theory challenging, reflexive, and politely skeptical. (shrink)

This article studies the role of entrepreneurship in business ethics and promotes a resource-based ethics. The need for and usefulness of this form of ethics emerge from an analysis of contemporary business ethics that appears to be inefficacious and from a moral business practice formed out of the relationship between the veal calf industry of the VanDrie Group and the Dutch Society for the Protection of Animals in their development and implementation of a Welfare Hallmark for calves. Both organizations created (...) jointly a new meat segment in the market by trust-building and partnership. The relationship shows a remodeling of capabilities of both organizations in the light of co-creation of values. The VanDrie Group established an effectuation of moral goals by being socially sensitive and resource-minded. The DSPA created openings for dialogue by being pragmatic in its ideals. Philosophically, this article sketches a resource-based ethics with Deweyan concepts as end-in-view and transactionality of means and ends. Both organizations show in their entrepreneurship the ability to create, what is called "Room for Maneuver" by exploring, socializing, individualizing, and growing. By maneuvering they set off a form of co-evolution between business and ethics. This article demonstrates what actual moral entrepreneurship can do in bringing about moral change by combining effectively social, policy, norm, and economic related values. (shrink)

Although neurological disease and mental illness can cause terrible human suffering, strategies for researching their causes and cures are not obvious. Invasive brain research on actual human being...

Coercion in mental health care gives rise to many ethical challenges. Many countries have recently implemented state policy programs or development projects aiming to reduce coercive practices and improve their quality. Few studies have explored the possible role of ethics in such initiatives. This study adds to this subject by exploring health professionals’ descriptions of their ethical challenges and strategies in everyday life to ensure morally justified coercion and best practices. Seven semi-structured telephone interviews were carried out in 2012 with (...) key informants in charge of central development projects and quality-assurance work in mental health services in Norway. No facilities used formal clinical ethics support. However, the informants described five areas in which ethics was of importance: moral concerns as implicit parts of local quality improvement initiatives; moral uneasiness and idealism as a motivational source of change; creating a normative basis for development work; value-based leadership; and increased staff reflexivity on coercive practices. The study shows that coercion entails both individual and institutional ethical aspects. Thus, various kinds of moral deliberation and ethics support could contribute to addressing coercion challenges by offering more systematic ways of dealing with moral concerns. However, more strategic use of implicit and institutional ethics is also needed. (shrink)

A Second level Master in “Clinical Bioethics Consultation” has been organized in Italy to offer an opportunity to offer an adequate training to carry out an ethics consultation in different health fields. The master has been promoted and realized by different institutions: Catholic University of Sacred Hearth in Rome, Insubria University in Varese, “Federico II” University in Naples, Lanza Foundation in Padua and the Local Health and Social Care Unit n.7 in Veneto Region. The aim of the master is train (...) ethics consultants to offer help regarding a correct decision, which will take by others. The choice must be as much as possible shared between patient, family and health care team. Ethics consultation can be primarily request by the physicians, nurses and health care staff such as support about a choice that wants to be the most appropriate and to clarify a dilemma between different options. Secondly an ethics consultation can be demand by the patient and the family members to find a clarification about their dilemmas and future choices. Also the administrative staff could ask the consultation, when it need to better explain ad example about a specific clinical case or a question concerned the health policy. (shrink)

Patient engagement in healthcare is increasingly discussed in the literature, and initiatives engaging patients in quality improvement activities, organizational design, governance, and research are becoming more and more common and have even become mandatory for certain health institutions. Here we discuss a number of ethical challenges raised by this engagement from patients from the perspectives of research, organizational/quality improvement practices, and patient experiences, while offering preliminary recommendations as to how to address them. We identified three broad categories of ethical issues (...) that intersect between the different types of patient engagement: (1) establishing a shared vision about goals of patient engagement and respective roles; (2) the process and method of engaging with patients; and (3) practical aspects of patient engagement. To explain these issues, we build from our personal, professional, and academic experiences, as well as traditions such as pragmatism and hermeneutics that stress the importance of participation, empowerment, and engagement. Patient engagement can be highly valuable at numerous levels, but particular attention should be paid to the process of engaging with patients and related ethical issues. Some lessons from the literature on the ethics of participatory research can be translated to organizational and quality improvement practices. (shrink)

The use of coercion is morally problematic and requires an ongoing critical reflection. We wondered if not knowing or being uncertain whether coercion is morally right or justified is related to professionals’ normative attitudes regarding the use of coercion. This paper describes an explorative statistical analysis based on a cross-sectional survey across seven wards in three Norwegian mental health care institutions. Descriptive analyses showed that in general the 379 respondents a) were not so sure whether coercion should be seen as (...) offending, b) agreed with the viewpoint that coercion is needed for care and security, and c) slightly disagreed that coercion could be seen as treatment. Staff did not report high rates of moral doubt related to the use of coercion, although most of them agreed there will never be a single answer to the question ‘What is the right thing to do?’. Bivariate analyses showed that the more they experienced general moral doubt and relative doubt, the more one thought that coercion is offending. Especially psychologists were critical towards coercion. We found significant differences among ward types. Respondents with decisional responsibility for coercion and leadership responsibility saw coercion less as treatment. Frequent experience with coercion was related to seeing coercion more as care and security. This study showed that experiencing moral doubt is related to some one’s normative attitude towards coercion. Future research could investigate whether moral case deliberation increases professionals’ experience of moral doubt and whether this will evoke more critical thinking and increase staff’s curiosity for alternatives to coercion. (shrink)

BackgroundIn gender-affirming medical care (GAMC), ethical challenges in decision-making are ubiquitous. These challenges are becoming more pressing due to exponentially increasing referrals, politico-legal contestation, and divergent normative views regarding decisional roles and models. Little is known, however, about what ethical challenges related to decision-making healthcare professionals (HCPs) themselves face in their daily work in GAMC and how these relate to, for example, the subjective nature of Gender Incongruence (GI), the multidisciplinary character of GAMC and the role HCPs play in assessing (...) GI and eligibility for interventions. Given the relevance and urgency of these questions, we conducted a qualitative study among HCPs providing GAMC to transgender adults in the Netherlands.MethodsIn this qualitative research, we conducted 11 semi-structured interviews between May 2020 and February 2021 with HCPs (six mental health professionals, two HCPs in endocrinology, two in plastic surgery, and one in nursing) working in two distinct GAMC settings. We purposively sampled for professional background and years of experience in GAMC. We analyzed our interview data using thematic analysis. As some respondents were more inclined to speak about what should or ought to be done to arrive at good or right decision-making, we identified both ethical challenges and norms. Furthermore, in our analysis, we differentiated between respondents’ explicit and implicit ethical challenges and norms and ascertained the specific context in which these challenges emerged.ResultsRespondents’ ethical challenges and norms centered on (1) dividing and defining decisional roles and bounds, (2) negotiating decision-making in a (multidisciplinary) team, and (3) navigating various decision-making temporalities. These themes arose in the context of uncertainties regarding (1) GAMC’s guidelines, evidence, and outcomes, as well as (2) the boundaries and assessment of GI.ConclusionsThis interview study provides detailed empirical insight into both the explicit and implicit ethical challenges that HCPs experience and their ethical norms regarding decision-making. It also describes how uncertainties and (implicit) normativities concerning GAMC and GI pre-structure the moral environment in which these challenges and norms manifest. We provide normative reflections and recommendations on handling these ethical challenges in a way that is sensitive to the context in which they arise. (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)

BackgroundThere have been notable investments in large multi-partner research programmes across the agriculture-nutrition-health (ANH) nexus. These studies often involve human participants and commonly require research ethics review. These ANH studies are complex and can raise ethical issues that need pre-field work, ethical oversight and also need an embedded process that can identify, characterise and manage ethical issues as the research work develops, as such more embedded and dynamic ethics processes are needed. This work builds on notions of ‘ethics in practice’ (...) by developing an approach to facilitate ethical reflection within large research programmes. This study explores the application of a novel ‘real-time research ethics approach’ (RTREA) and how this can support ethical mindfulness. This involves embedding ethical analysis and decision-making within research implementation, with a continuous dialogue between participants and researchers. The aim is to improve ethical responsiveness and participant experience, which in turn may ethically support adherence and retention. In this case study, a bioethics team (BT) was embedded in a community-based randomised, controlled trial conducted in rural Malawi, titled the ‘Addressing Hidden Hunger with Agronomy’. To identify ethical issues, the researchers conducted ten focus group discussions, fourteen in-depth interviews with key informants, two workshops, observed two sensitisation and three activity meetings conducted by the trial team, and analysed fifteen reports from pre-trial to trial implementation.ResultsThe RTREA facilitated the identification of social and ethical concerns and made researchers aware of participants’ ‘lived research experience’. To address concerns and experiences, the BT worked with researchers to facilitate conversation spaces where social and ethical issues were discussed. Conversation spaces were designed to create partnerships and promote participatory methods to capture trial participants’ (TPs) perspectives and experiences.ConclusionsThe use of RTREA showed the value of real-time and continuous engagement between TPs and researchers. These real-time processes could be embedded to complement traditional ethical guidance and expert opinions. A deeper engagement appeared to support greater operationalising of principles of inclusion, empowerment, and participant autonomy and supported researchers ‘ethical mindfulness’ which in turn may support instrumental outcomes of high recruitment, retention, and adherence levels. (shrink)

In some criminal cases a forensic psychiatrist is asked to make an assessment of the state of mind of the defendant at the time of the legally relevant act. A considerable number of people seem to hold that the basis for this assessment is that free will is required for legal responsibility, and that mental disorders can compromise free will. In fact, because of the alleged relationship between the forensic assessment and free will, researchers in forensic psychiatry also consider the (...) complicated metaphysical discussions on free will relevant to the assessment. At the same time, there is concern about the lack of advancement with respect to clarifying the nature of the forensic assessment. In this paper I argue that, even if free will is considered relevant, there may be no need for forensic researchers to engage into metaphysical discussions on free will in order to make significant progress. I will do so, drawing a parallel between the assessment of criminal responsibility on the one hand, and the medical practice of obtaining informed consent on the other. I argue that also with respect to informed consent, free will is considered relevant, or even crucial. This is the parallel. Yet, researchers on informed consent have not entered into metaphysical debates on free will. Meanwhile, research on informed consent has made significant progress. Based on the parallel with respect to free will, and the differences with respect to research, I conclude that researchers on forensic assessment may not have to engage into metaphysical discussions on free will in order to advance our understanding of this psychiatric practice. (shrink)

Greely argues that surrogates for living human brains in vivo might be of tremendous benefit to understanding human brain function—and eventually to curing devastating brain diseases—without...

Volume 20, Issue 4, May 2020, Page 78-80.

Moral distress forms a major threat to the well-being of healthcare professionals, and is argued to negatively impact patient care. It is associated with emotions such as anger, frustration, guilt, and anxiety. In order to effectively deal with moral distress, the concept of moral resilience is introduced as the positive capacity of an individual to sustain or restore their integrity in response to moral adversity. Interventions are needed that foster moral resilience among healthcare professionals. Ethics consultation has been proposed as (...) such an intervention. In this paper, we add to this proposition by discussing Moral Case Deliberation (MCD) as a specific form of clinical ethics support that promotes moral resilience. We argue that MCD in general may contribute to the moral resilience of healthcare professionals as it promotes moral agency. In addition, we focus on three specific MCD reflection methods: the Dilemma Method, the Aristotelian moral inquiry into emotions, and CURA, a method consisting of four main steps: Concentrate, Unrush, Reflect, and Act. In practice, all three methods are used by nurse ethicists or by nurses who received training to facilitate reflection sessions with these methods. We maintain that these methods also have specific elements that promote moral resilience. However, the Dilemma Method fosters dealing well with tragedy, the latter two promote moral resilience by including attention to emotions as part of the reflection process. We will end with discussing the importance of future empirical research on the impact of MCD on moral resilience, and of comparing MCD with other interventions that seek to mitigate moral distress and promote moral resilience. (shrink)

The systematic review of reasons is a new way to obtain comprehensive information about specific ethical topics. One such review was carried out for the question of why post-trial access to trial drugs should or need not be provided. The objective of this study was to empirically validate this review using an author check method. The article also reports on methodological challenges faced by our study.

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)

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

International health research in malaria-endemic settings may include screening for sickle cell disease, given the relationship between this important genetic condition and resistance to malaria, generating questions about whether and how findings should be disclosed. The literature on disclosing genetic findings in the context of research highlights the role of community consultation in understanding and balancing ethically important issues from participants’ perspectives, including social forms of benefit and harm, and the influence of access to care. To inform research practice locally, (...) and contribute to policy more widely, this study aimed to explore the views of local residents in Kilifi County in coastal Kenya on how researchers should manage study-generated information on sickle cell disease and carrier status. (shrink)

Recent advancements in therapeutic and diagnostic medicine, along with the creation of large biobanks and methods for monitoring health technologies, have improved the prospects for preventing, treating, and curing illness. These same advancements, however, give rise to a plethora of ethical questions concerning good decision-making and best action. These ethical questions engage policymakers, practitioners, scientists, and researchers from a variety of fields in different ways. Collaborations between professionals in the medical and health sciences and the social sciences and humanities often (...) take an asymmetrical form, as when social scientists use ethnographic approaches to study the moral issues and practices of physicians. The ethics laboratory described in this article is a cross-sectoral and inter-disciplinary forum for collaborative investigation on important moral topics. It offers an experimental way of unpacking implied assumptions, underlying values, and comparable notions from different professional healthcare fields. The aim of this article is to present the ethics laboratory’s methodology. The article offers a model and a hermeneutical framework that rests on a dialogical approach to ethical questions. The model and the framework derive from a Danish research project, _Personalized Medicine in the Welfare State_. This article uses personalized medicine as a point of reference, though it offers an argument for the applicability of the model more broadly. (shrink)

The expansion of the older population suggests that there will be significant numbers in need of care and support in their own home environment. Yet, little is known about the kind of situations professionals are faced with and how they intervene in the living environment of older people. Qualitative data were collected over a period of 1.5 years from a multi-disciplinary community-based geriatric team in the Netherlands, and participant observations carried out. Forty-two cases discussed within the team meetings were analysed. (...) Results demonstrate that providing care to older people is a dynamic process and revolves around various paradoxes as experienced by professionals. This is illustrated by presenting three paradoxes that emerged within the data: respecting autonomy versus preserving safety; the care needs of the care recipients versus the capacity of their informal carers to cope; and holding a formal orientation versus a tailored orientation on tasks. Providing care in the home environment of older people requires from professionals a continuous anticipation of (un)expected evolutions in situations of their care recipients. In order to optimally support older people professionals need ‘professional discretion’. They must be supported to systematically reflect on and legitimize their intervention strategies. (shrink)

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

In “A Conceptual Model for the Translation of Bioethics Research and Scholarship,” Debra Mathews et al. aim to “begin an important discussion” about how to measure success in bioethics, and in doing so they set out a typology of bioethics research and scholarship with the arguably correct assumption that we cannot evaluate success in bioethics without first understanding what its goals are. I think the authors are correct in their claim that, in the current academic climate, having work in bioethics (...) deemed a success is likely to hinge, in some way, on its being translated into practice and having impact. I want, however, to add a critical voice in the form of three considerations that I feel ought to be attended to before the work progresses further, the first being that the typology Mathews et al. propose is highly problematic. Although there is a burgeoning literature on “empirical bioethics” methodologies that blend empirical and conceptual work, the typology appears to ignore this. (shrink)