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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) | |
The rapid diffusion of artificial intelligence (AI) technologies in the defence domain raises challenges for the ethical governance of these systems. A recent shift from the what to the how of AI ethics sees a nascent body of literature published by defence organisations focussed on guidance to implement AI ethics principles. These efforts have neglected a crucial intermediate step between principles and guidance concerning the elicitation of ethical requirements for specifying the guidance. In this article, we outline the key normative (...) choices and corresponding tradeoffs that are involved in specifying guidance for the implementation of AI ethics principles in the defence domain. These correspond to: the AI lifecycle model used; the scope of stakeholder involvement; the accountability goals chosen; the choice of auditing requirements; and the choice of mechanisms for transparency and traceability. We provide initial recommendations for navigating these tradeoffs and highlight the importance of a pro-ethical institutional culture. (shrink) | |
The online space has become a digital public square, where individuals interact and share ideas on the most trivial to the most serious of matters, including discussions of controversial ethical issues in science, technology and medicine. In the last decade, new disciplines like computational social science and social data science have created methods to collect and analyse such data that have considerably expanded the scope of social science research. Empirical bioethics can benefit from the integration of such digital methods to (...) investigate novel digital phenomena and trace how bioethical issues take shape online.Here, using concrete examples, we demonstrate how novel methods based on digital approaches in the social sciences can be used effectively in the domain of bioethics. We show that a digital turn in bioethics research aligns with the established aims of empirical bioethics, integrating with normative analysis and expanding the scope of the discipline, thus offering ways to reinforce the capacity of bioethics to tackle the increasing complexity of present-day ethical issues in science and technology. We propose to call this domain of research in bioethicsdigital bioethics. (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) | |
Historically, empirical research in bioethics has drawn on methods developed within the social sciences, including qualitative interviews, focus groups, ethnographic studies, and opinion surveys, t... | |
A review of literature published a decade ago noted a significant increase in empirical papers across nine bioethics journals. This study provides an update on the presence of empirical papers in the same nine journals. It first evaluates whether the empirical trend is continuing as noted in the previous study, and second, how it is changing, that is, what are the characteristics of the empirical works published in these nine bioethics journals. A review of the same nine journals was conducted (...) for a 12-year period from 2004 to 2015. Data obtained was analysed descriptively and using a non-parametric Chi-square test. Of the total number of original papers published in the nine bioethics journals, 18.1% collected and analysed empirical data. Journal of Medical Ethics and Nursing Ethics led the empirical publications, accounting for 89.4% of all empirical papers. The former published significantly more quantitative papers than qualitative, whereas the latter published more qualitative papers. Our analysis reveals no significant difference between the proportion of empirical papers published in 2004–2009 and 2010–2015. However, the increasing empirical trend has continued in these journals with the proportion of empirical papers increasing from 14.9% in 2004 to 17.8% in 2015. This study presents the current state of affairs regarding empirical research published nine bioethics journals. In the quarter century of data that is available about the nine bioethics journals studied in two reviews, the proportion of empirical publications continues to increase, signifying a trend towards empirical research in bioethics. The growing volume is mainly attributable to two journals: Journal of Medical Ethics and Nursing Ethics. This descriptive study further maps the still developing field of empirical research in bioethics. Additional studies are needed to completely map the nature and extent of empirical research in bioethics to inform the ongoing debate about the value of empirical research for bioethics. (shrink) | |
Background There is growing interest in the use and incorporation of empirical data in bioethics research. Much of the recent focus has been on specific “empirical bioethics” methodologies, which attempt to integrate the empirical and the normative. Researchers in the field are, however, beginning to explore broader questions, including around acceptable standards of practice for undertaking such research. The framework: In this article, we further widen the focus to consider the overall shape of an empirical bioethics research project. We outline (...) a framework that identifies three key phases of such research, which are conveyed via a landscaping metaphor of Mapping-Framing-Shaping. First, the researcher maps the field of study, typically by undertaking literature reviews. Second, the researcher frames particular areas of the field of study, exploring these in depth, usually via qualitative research. Finally, the researcher seeks to shape the terrain by issuing recommendations that draw on the findings from the preceding phases. To qualify as empirical bioethics research, the researcher will utilise a methodology that seeks to bridge these different elements in order to arrive at normative recommendations. We illustrate the framework by citing examples of diverse projects which broadly adopt the three-phase framework. Amongst the strengths of the framework are its flexibility, since it does not prescribe any specific methods or particular bridging methodology. However, the framework might also have its limitations, not least because it appears particularly to capture projects that involve qualitative – as opposed to quantitative – research. Conclusions Despite its possible limitations, we offer the Mapping-Framing-Shaping framework in the hope that this will prove useful to those who are seeking to plan and undertake empirical bioethics research projects. (shrink) | |
When clinical ethics committee members discuss a complex ethical dilemma, what use do they have for normative ethical theories? Members without training in ethical theory may still contribute to a pointed and nuanced analysis. Nonetheless, the knowledge and use of ethical theories can play four important roles: aiding in the initial awareness and identification of the moral challenges, assisting in the analysis and argumentation, contributing to a sound process and dialogue, and inspiring an attitude of reflexivity. These four roles of (...) ethical theory in clinical ethics consultation are described and their significance highlighted, while an example case is used as an illustration throughout. (shrink) | |
This article provides a methodology for the interpretation of AI ethics principles to specify ethical criteria for the development and deployment of AI systems in high-risk domains. The methodology consists of a three-step process deployed by an independent, multi-stakeholder ethics board to: (1) identify the appropriate level of abstraction for modelling the AI lifecycle; (2) interpret prescribed principles to extract specific requirements to be met at each step of the AI lifecycle; and (3) define the criteria to inform purpose- and (...) context-specific balancing of the principles. The methodology presented in this article is designed to be agile, adaptable, and replicable, and when used as part of a pro-ethical institutional culture, will help to foster the ethical design, development, and deployment of AI systems. The application of the methodology is illustrated through reference to the UK Ministry of Defence AI ethics principles. (shrink) No categories | |
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) | |
Reflectivists consider reflective reasoning crucial for good judgment and action. Anti-reflectivists deny that reflection delivers what reflectivists seek. Alas, the evidence is mixed. So, does reflection confer normative value or not? This paper argues for a middle way: reflection can confer normative value, but its ability to do this is bound by such factors as what we might call epistemic identity: an identity that involves particular beliefs—for example, religious and political identities. We may reflectively defend our identities’ beliefs rather than (...) reflect open-mindedly to adopt whatever beliefs cohere with the best arguments and evidence. This bounded reflectivism is explicated with an algorithmic model of reflection synthesized from philosophy and science that yields testable predictions, psychometric implications, and realistic metaphilosophical suggestions—for example, overcoming motivated reflection may require embracing epistemic identity rather than veiling it (à la Rawls 1971). So bounded reflectivism should be preferred to views offering anything less. (shrink) | |
Abstract:In this article, we present a pragmatic approach to neuroethics, referring back to John Dewey and his articulation of the “common good” and its discovery through systematic methods. Pragmatic neuroethics bridges philosophy and social sciences and, at a very basic level, considers that ethics is not dissociable from lived experiences and everyday moral choices. We reflect on the integration between empirical methods and normative questions, using as our platform recent bioethical and neuropsychological research into moral cognition, action, and experience. Finally, (...) we present the protocol of a study concerning teenagers’ morality in everyday life, discussing our epistemological choices as an example of a pragmatic approach in empirical ethics. We hope that this article conveys that even though the scope of neuroethics is broad, it is important not to move too far from the real life encounters that give rise to moral questions in the first place. (shrink) | |
The concepts of disease, illness and sickness capture fundamentally different aspects of phenomena related to human ailments and healthcare. The philosophy and theory of medicine are making manifold efforts to capture the essence and normative implications of these concepts. In parallel, socio-empirical studies on patients’ understanding of their situation have yielded a comprehensive body of knowledge regarding subjective perspectives on health-related statuses. Although both scientific fields provide varied valuable insights, they have not been strongly linked to each other. Therefore, the (...) article aims to scrutinise the normative-ethical implications of patient perspectives in building a bridge to the empirical ethics debates. Three potential fields of tension between the illness and the disease perspective are presented. Consequently, findings from empirical research examining patient perspectives on illness are displayed and the practical implications and associated ethical issues which arise are discussed. This leads to the conclusion that an explicit and elaborate empirical-ethical methodology is needed to deal appropriately with the complex interaction between patients’ views and the medico-professional view of disease. Kon’s four-stage model of normative-empirical collaboration is then applied against the background of empirical data on patient perceptions. Starting from this exemplary approach, the article suggests employing empirical-ethical frameworks for further research on the conceptual and normative issues, as they help to integrate perspectives from the philosophy of medicine with socio-empirical research. The combination of theoretical and empirical perspectives suggested contributes to a more nuanced discussion of the normative impact of patients’ actual understanding of illness. Further empirical research in this area would profit from explicitly considering potential ethical issues to avoid naturalistic fallacies or crypto-normative conclusions that may compromise healthcare practice. Vice versa, medico-theoretical debates could be enriched by integrating subjective views of those people who are immediately affected. (shrink) | |
Bioethics has made a compelling case for the role of experience and empirical research in ethics. This may explain why the movement for empirical ethics has such a firm grounding in bioethics. However, the theoretical framework according to which empirical research contributes to ethics—and the specific role it can or should play—remains manifold and unclear. In this paper, we build from pragmatic theory stressing the importance of experience and outcomes in establishing the meaning of ethics concepts. We then propose three (...) methodological steps according to which the meaning of ethics concepts can be refined based on experience and empirical research: function identification, function enrichment, and function testing. These steps are explained and situated within the broader commitment of pragmatic ethics to a perspective of moral growth and human flourishing. We hope that this proposal will give specific direction to the bridging of theoretical and empirical research in ethics and thus support stronger actualization of ethics concepts. (shrink) | |
Empirical bioethics is commonly understood as integrating empirical research with normative-ethical research in order to address an ethical issue. Methodological analyses in empirical bioethics mainly focus on the integration of socio-empirical sciences and normative ethics. But while there are numerous multidisciplinary research projects combining life sciences and normative ethics, there is few explicit methodological reflection on how to integrate both fields, or about the goals and rationales of such interdisciplinary cooperation. In this paper we will review some drivers for the (...) tendency of empirical bioethics methodologies to focus on the collaboration of normative ethics with particularly social sciences. Subsequently, we argue that the ends of empirical bioethics, not the empirical methods, are decisive for the question of which empirical disciplines can contribute to empirical bioethics in a meaningful way. Using already existing types of research integration as a springboard, five possible types of research which encompass life sciences and normative analysis will illustrate how such cooperation can be conceptualized from a methodological perspective within empirical bioethics. We will conclude with a reflection on the limitations and challenges of empirical bioethics research that integrates life sciences. (shrink) | |
We present here a new method for bioethics: systemic modelling. In this method, the complex phenomenon being studied (e.g. personalized medicine, genetic testing, gene therapy, genetically modified organisms) is modelled as a whole, to shed light on its organization and functioning, and major (bio)ethical issues and solutions for their resolution are then identified. This systemic modelling method is ideal for use in the identification of solutions, rather than their validation, with other methods then used to test the solutions found. We (...) provide a description and reproducible instructions for the application of systemic modelling in bioethics, together with a brief example of the application of this method to the study of the impact of personalized medicine on French society. (shrink) No categories | |
This article is concerned with the role empirical research can play in normative practical ethics. There is no doubt that ethical research requires some kind of collaboration between normative disciplines and empirical sciences. But many researchers hold that empirical science is only assigned a subordinate role, due to the doctrine that normative conclusions cannot be justified by descriptive premises. Scientists working in the field of ethics commonly hold, however, that the empirical sciences should play a much bigger role in ethical (...) research. The aim of this paper is to show that empirical sciences can play a substantive role in normative ethics, with no illicit inferences from is to ought. To achieve this aim, I explain Hume’s thesis. In the following sections, I am concerned with different uses of empirical data that do not imply an illicit inference from descriptive premises to a normative conclusion. The article demonstrates that there are many modes of ethical reasoning that allow for a substantive use of empirical data, and it also shows the importance of Hume’s thesis for clarifying ethical reasoning. (shrink) | |
This paper proposes a new perspective on the methodology of qualitative inquiry in ethics, especially the interaction between empirical work and theory development, and introduces standards to evaluate the quality of this inquiry and its findings. The kind of qualitative inquiry the authors are proposing brings to light what participants in practices of care and welfare do and refrain from doing, and what they undergo, in order to offer ‘stepping stones’, political-ethical insights that originate in the practice studied and enable (...) practitioners to deal with newly emerging moral issues. As the authors’ aim is to study real-life complexity of inevitably morally imprinted care processes, their empirical material typically consists of extensive and comprehensive descriptions of exemplary cases. For their research aim the number of cases is not decisive, as long as the rigorous analysis of the cases studied provides innovative theoretical insights into the practice studied. Another quality criterion of what they propose that should be called ‘N=N case studies’ is the approval the findings receive from the participants in the practice studied. (shrink) | |
Healthcare priority-setting institutions have good reason to want to demonstrate that their decisions are morally justified—and those who contribute to and use the health service have good reason to hope for the same. However, finding a moral basis on which to evaluate healthcare priority-setting is difficult. Substantive approaches are vulnerable to reasonable disagreement about the appropriate grounds for allocating resources, while procedural approaches may be indeterminate and insufficient to ensure a just distribution. In this paper, we set out a complementary, (...) coherence-based approach to the evaluation of healthcare priority-setting. Drawing on Rawls, we argue that an institutional priority-setter’s claim to moral justification can be assessed, in part, based on the extent to which its many normative commitments are mutually supportive and free from dissonance; that is, on the ability to establish narrow reflective equilibrium across the normative content of a priority-setter’s policy and practice. While we do not suggest that the establishment of such equilibrium is sufficient for moral justification, we argue that failure to do so might—like the proverbial canary in the coalmine—act as a generalised warning that something is awry. We offer a theoretical argument in support of this view and briefly outline a practical method for systematically examining coherence across priority-setting policy and practice. (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 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) | |
BackgroundThis study aims to quantitatively and qualitatively evaluate the activities of a Bioethics Unit (BU) 5 years since its implementation (2016–2020). The BU is a research unit providing empirical research on ethical issues related to clinical practice, clinical ethics consultation, and ethical education for health care professionals (HPS).MethodsWe performed an explanatory, sequential, mixed-method, observational study, using the subsequent qualitative data to explain the initial quantitative findings. Quantitative data were collected from an internal database and analyzed by descriptive analysis. Qualitative evaluation (...) was performed by semi-structured interviews with 18 HPs who were differently involved in the BU’s activities and analyzed by framework analysis.ResultsQuantitative results showed an extensive increment of the number of BU research projects over the years and the number of work collaborations with other units and wards. Qualitative findings revealed four main themes, concerning: 1. the reasons for contacting the BU and the type of collaboration; 2. the role of the bioethicist; 3. the impact of BU activities on HPs, in terms of developing deeper and more mature thinking; 4. the need to extend ethics support to other settings. Overall, our results showed that performing both empirical bioethics research and more traditional clinical ethics activities at the same unit would produce an impetus to increase collaboration and spread an 'ethical culture' among local HPs.ConclusionsOur findings contribute to a growing body of literature on the models of clinical ethics support services and the role of empirical research in bioethics internationally. They also prepare the ground for the implementation of a multidisciplinary Clinical Ethics Committee (CEC) that aims to support the BU’s ethics consultation service within the local context. (shrink) No categories | |
In the VIBeS study, Pierson et al. (2024) observe that the views of U.S. bioethicists do not align with views of clinicians or with broader U.S. public opinion. They also note that the bioethics co... | |
Because no single person or group holds knowledge about all aspects of research, mechanisms are needed to support knowledge exchange and engagement. Expertise in the research setting necessarily includes scientific and methodological expertise, but also expertise gained through the experience of participating in research and/or being a recipient of research outcomes. Engagement is, by its nature, reciprocal and relational: the process of engaging research participants, patients, citizens and others brings them closer to the research but also brings the research closer (...) to them. When translating research into practice, engaging the public and other stakeholders is explicitly intended to make the outcomes of translation relevant to its constituency of users. In practice, engagement faces numerous challenges and is often time-consuming, expensive and ‘thorny’ work. We explore the epistemic and ontological considerations and implications of four common critiques of engagement methodologies that contest: representativeness, communication and articulation, impacts and outcome, and democracy. The ECOUTER methodology addresses problems of representation and epistemic foundationalism using a methodology that asks, “How could it be otherwise?” ECOUTER affords the possibility of engagement where spatial and temporal constraints are present, relying on saturation as a method of ‘keeping open’ the possible considerations that might emerge and including reflexive use of qualitative analytic methods. This paper describes the ECOUTER process, focusing on one worked example and detailing lessons learned from four other pilots. ECOUTER uses mind-mapping techniques to ‘open up’ engagement, iteratively and organically. ECOUTER aims to balance the breadth, accessibility and user-determination of the scope of engagement. An ECOUTER exercise comprises four stages: engagement and knowledge exchange; analysis of mindmap contributions; development of a conceptual schema ; and feedback, refinement and development of recommendations. ECOUTER refuses fixed truths but also refuses a fixed nature. Its promise lies in its flexibility, adaptability and openness. ECOUTER will be formed and re-formed by the needs and creativity of those who use it. (shrink) | |
Smart-home technologies, comprising environmental sensors, wearables and video are attracting interest in home healthcare delivery. Development of such technology is usually justified on the basis of the technology’s potential to increase the autonomy of people living with long-term conditions. Studies of the ethics of smart-homes raise concerns about privacy, consent, social isolation and equity of access. Few studies have investigated the ethical perspectives of smart-home engineers themselves. By exploring the views of engineering researchers in a large smart-home project, we sought (...) to contribute to dialogue between ethics and the engineering community. Either face-to-face or using Skype, we conducted in-depth qualitative interviews with 20 early- and mid-career smart-home researchers from a multi-centre smart-home project, who were asked to describe their own experience and to reflect more broadly about ethical considerations that relate to smart-home design. With participants’ consent, interviews were audio-recorded, transcribed and analysed using a thematic approach. Two overarching themes emerged: in ‘Privacy’, researchers indicated that they paid close attention to negative consequences of potential unauthorised information sharing in their current work. However, when discussing broader issues in smart-home design beyond the confines of their immediate project, researchers considered physical privacy to a lesser extent, even though physical privacy may manifest in emotive concerns about being watched or monitored. In ‘Choice’, researchers indicated they often saw provision of choice to end-users as a solution to ethical dilemmas. While researchers indicated that choices of end-users may need to be restricted for technological reasons, ethical standpoints that restrict choice were usually assumed and embedded in design. The tractability of informational privacy may explain the greater attention that is paid to it. However, concerns about physical privacy may reduce acceptability of smart-home technologies to future end-users. While attention to choice suggests links with privacy, this may misidentify the sources of privacy and risk unjustly burdening end-users with problems that they cannot resolve. Separating considerations of choice and privacy may result in more satisfactory treatment of both. Finally, through our engagement with researchers as participants this study demonstrates the relevance of ethics as a critical partner to smart-home engineering. (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) No categories | |
This entry summarizes an emerging subdiscipline of both empirical bioethics and experimental philosophy (“x-phi”) which has variously been referred to as experimental philosophical bioethics, experimental bioethics, or simply “bioxphi”. Like empirical bioethics, bioxphi uses data-driven research methods to capture what various stakeholders think (feel, judge, etc.) about moral issues of relevance to bioethics. However, like its other parent discipline of x-phi, bioxphi tends to favor experiment-based designs drawn from the cognitive sciences – including psychology, neuroscience, and behavioral economics – to (...) tease out why and how stakeholders think as they do. (shrink) | |
After the ‘empirical turn’ in bioethics, few specific approaches have been developed for doing clinical ethics research in close connection with clinical decision-making on a daily basis. In this paper we describe the ‘committed researcher’ approach to research in clinical ethics that we have developed over the years. After comparing it to two similar research methodological approaches, the ‘embedded researcher’ and ‘deliberative engagement’, we highlight its main features: it is patient-oriented, it is implemented by collegial and multidisciplinary teams, it uses (...) an ethical grid to build the interview guide, and it is geared towards bringing the results to bear on the public debate surrounding the issue at stake. Finally, we position our methodological approach with respect to the ‘is vs. ought’ distinction. We argue that our ‘commitment researcher’ approach to clinical ethics research takes concerned people’s life-building values as the main data, and compares them to the larger normative framework underlying the medical practice at stake. (shrink) | |
BackgroundThis is the first qualitative study to investigate how researchers, who do empirical work in bioethics, relate to objectives of empirical research in bioethics (ERiB). We explore reasons that make some objectives more acceptable, while others are deemed less acceptable.MethodsUsing qualitative exploratory study design, we interviewed bioethics researchers, who were selected to represent different types of scholars working in the field. The interview data of 25 participants were analyzed in this paper using thematic analysis. ResultsFrom the eight objectives presented to (...) the study participants, understanding the context of a bioethical issue and identifying ethical issues in practice received unanimous agreement. Participants also supported other objectives of ERiB but with varying degrees of agreement. The most contested objectives were striving to draw normative recommendations and developing and justifying moral principles. The is-ought gap was not considered an obstacle to ERiB, but rather a warning sign to critically reflect on the normative implications of empirical results.ConclusionsOur results show that the most contested objectives are also the more ambitious ones, whereas the least contested ones focus on producing empirical results. The potential of empirical research to be useful for bioethics was mostly based on the reasoning pattern that empirical data can provide a testing ground for elements of normative theory. Even though empirical research can inform many parts of bioethical inquiry, normative expertise is recommended to guide ERiB. The acceptability of ambitious objectives for ERiB boils down to finding firm ground for the integration of empirical facts in normative inquiry. (shrink) No categories | |
This paper aims to provide a description of how authors publishing in medical ethics journals have made use of empirical research data in papers on the topic of gamete or embryo donation by means of references to studies conducted by others. Rather than making a direct contribution to the theoretical methodological literature about the role empirical research data could play or should play in ethics studies, the focus is on the particular uses of these data and the problems that can (...) be encountered with this use. In the selection of papers examined, apart from being used to describe the context, empirical evidence was mainly used to recount problems that needed solving. Few of the authors looked critically at the quality of the studies they quoted, and several instances were found of empirical data being used poorly or inappropriately. This study provides some initial baseline evidence that shows empirical data, in the form of references to studies, are sometimes being used in inappropriate ways. This suggests that medical ethicists should be more concerned about the quality of the empirical data selected, the appropriateness of the choice for a particular type of data and the correct integration of this evidence in sound argumentation. Given that empirical data can be misused also when merely cited instead of reported, it may be worthwhile to explore good practice requirements for this type of use of empirical data in medical ethics. (shrink) No categories | |
This article provides a commentary on Standards of practice in empirical bioethics research by Ives and colleagues. There is much to admire in the paper, and in the demanding consensus-building process on which it reports. I discuss the problems and limits of methodological standardisation, and a central conceptual tension that appears to have divided participants. I suggest that the finished product should be understood as a record of a methodological conversation, rather than being used as a disciplinary tool to limit (...) the evolution of empirical bioethics. (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... | |
Pavarini et al. should be congratulated to their highly valuable contribution shedding light on methodological innovation for bioethics in the digital era. I see a great potential in their a... No categories | |
In the United States, the field of bioethics has expanded over the last two decades. Several institutions offer graduate-level training at both the masters and doctoral level. However, a lack of published literature on the outcomes of doctoral training in bioethics from the perspective of graduates exists. Researchers conducted an online survey of doctoral students who had finished all doctoral requirements but their dissertation, as well as doctoral graduates, of four US-based institutions to ascertain their perspectives on a number of (...) items regarding their doctoral training and their perception of how that training prepared them for their current role in the workforce. Responses from 34 participants were assessed. Respondents had positive overall views on the utility of a bioethics doctorate and the educational training they received in their respective programs. A number of areas for improvement were identified, including better structured clinical ethics training, greater opportunities for research and publishing, and having the ability to teach during their doctoral program, as well as formal pedagogy training. Greater exposure to clinical ethics consultation during the doctoral program was associated with feeling fully prepared as a clinical ethics consultant. This is the first study to assess the perspectives of bioethics doctoral graduates and ABD students regarding the utility of a bioethics doctorate. Per the perspectives of graduates and ABD students, bioethics doctorates are important and effective to train professional bioethicists. We recommend that a few key changes to these programs’ curricula can further bolster their effectiveness. (shrink) | |
The use of qualitative research in empirical bioethics is becoming increasingly popular, but its implementation comes with several challenges, such as difficulties in aligning moral epistemology and methods. In this paper, we describe some problems that empirical bioethics researchers may face; these problems are related to a tension between the different poles on the spectrum of scientific paradigms, namely a positivist and interpretive stance. We explore the ideas of narrative construction, ‘genres’ in medicine and dominant discourses in relation to empirical (...) research. We also reflect on the loss of depth and context that may occur with thematic or content analyses of interviews, and discuss the need for transparency about methodologies in empirical bioethics. Drawing on insights from narrative approaches in the social sciences and the clinical-educational discipline of Narrative Medicine, we further clarify these problems and suggest a narrative approach to qualitative interviewing in empirical bioethics that enables researchers to ‘listen (and read) in new ways’. We then show how this approach was applied in the first author’s research project about euthanasia decision-making. In addition, we stress the important ethical task of scrutinizing methodologies and meta-ethical standpoints, as they inevitably impact empirical outcomes and corresponding ethical judgments. Finally, we raise the question whether a ‘diagnostic’, rather than a ‘problem-solving’, mindset could and should be foregrounded in empirical ethics, albeit without losing a commitment to ethics’ normative task, and suggest further avenues for theorizing about listening and epistemic (in)justice in relation to empirical (bio)ethics. (shrink) No categories | |
The current empirical research and normative arguments on physician-assisted dying in the Netherlands seem insufficient to provide ethical guidance to general practitioners in the practice of PAD, due to a gap between the evidence and arguments on the one hand and the uncertainties and complexities as found in everyday practice on the other. This paper addresses the problems of current ethical arguments and empirical research and how both seem to be profoundly influenced by the Dutch legislative framework on PAD and (...) a certain view on ethics. Furthermore, the paper elaborates on how other approaches to empirical research in bioethics, such as found in the broad field of narrative research, could supplement the empirical and ethical evaluation of PAD in the Netherlands. This paper also addresses the challenging question of how empirical data—in this case narratives—relate to normativity. The paper is written in the form of a personal narrative of the author, a young Dutch general practitioner and researcher in bioethics. This style is intentionally chosen, to illustrate how work context and professional background influence the observations one makes and the questions one may ask about the topic of PAD. In addition, by using this style, this paper not only gives a different perspective on a much-contested bioethical issue, but also on the challenges faced when a physician–bioethicist has to navigate different disciplinary fields and epistemological paradigms, especially since the ‘empirical turn’ in bioethics. (shrink) | |
In line with recent proposals for experimental philosophy and philosophy of science in practice, we propose that the philosophy of medicine could benefit from incorporating empirical research, just as bioethics has. In this paper, we therefore take first steps towards the development of an empirical philosophy of medicine, that includes investigating practical and moral dimensions. This qualitative study gives insight into the views and experiences of a group of various medical professionals and patient representatives regarding the conceptualization of health and (...) disease concepts in practice and the possible problems that surround them. This includes clinical, epistemological, and ethical issues. We have conducted qualitative interviews with a broad range of participants (n = 17), working in various health-related disciplines, fields and organizations. From the interviews, we highlight several different practical functions of definitions of health and disease. Furthermore, we discuss 5 types of problematic situations that emerged from the interviews and analyze the underlying conceptual issues. By providing theoretical frameworks and conceptual tools, and by suggesting conceptual changes or adaptations, philosophers might be able to help solve some of these problems. This empirical-philosophical study contributes to a more pragmatic way of understanding the relevance of conceptualizing health and disease by connecting the participants’ views and experiences to the theoretical debate. Going back and forth between theory and practice will likely result in a more complex but hopefully also better and more fruitful understanding of health and disease concepts. (shrink) | |
Background At the beginning of the coronavirus (Covid-19) pandemic, many non-Covid healthcare services were suspended. In April 2020, the Department of Health in England mandated that non-Covid services should resume, alongside the continuing pandemic response. This ‘resetting’ of healthcare services created a unique context in which it became critical to consider how ethical considerations did (and should) underpin decisions about integrating infection control measures into routine healthcare practices. We draw on data collected as part of the ‘NHS Reset Ethics’ project, (...) which explored the everyday ethical challenges of resetting England’s NHS maternity and paediatrics services during the pandemic. Methods Healthcare professionals and members of the public participated in interviews and focus group discussions. The qualitative methods are reported in detail elsewhere. The focus of this article is our use of Frith’s symbiotic empirical ethics methodology to work from our empirical findings towards the normative suggestion that clinical ethics should explicitly attend to the importance of relationships in clinical practice. This methodology uses a five-step approach to refine and develop ethical theory based on a naturalist account of ethics that sees practice and theory as symbiotically related. Results The Reset project data showed that changed working practices caused ethical challenges for healthcare professionals, and that infection prevention and control measures represented harmful barriers to the experience of receiving and offering care. For healthcare professionals, offering care as part of a relational interaction was an ethically important dimension of healthcare delivery. Conclusions Our findings suggest that foregrounding the importance of relationships across a hospital community will better promote the ethically important multi-directional expression of caring between healthcare professionals, patients, and their families. We offer two suggestions for making progress towards such a relational approach. First, that there is a change of emphasis in clinical ethics practice to explicitly acknowledge the importance of the relationships (including with their healthcare team) within which the patient is held. Second, that organisational decision-making should take into account the moral significance afforded to caring relationships by healthcare professionals, and the role such relationships can play in the negotiation of ethical challenges. (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... | |
Verbal autopsy presents the opportunity to understand the disease burden in many low-income countries where vital registration systems are underdeveloped and most deaths occur in the community. Advances in technology have led to the development of software that can provide probable cause of death information in real time, and research considering the ethical implications of these advances is necessary to inform policy. Our research explores these ethical issues in rural Nepal using a public health ethics framework. We considered the burdens (...) and benefits of VA and giving cause of death information to families of the deceased through qualitative research with VA interviewers, community members, national policy stakeholders and international academics. Burdens can be experienced differently, and it is important to balance the emotional burden of VA with utilization of the data to inform planning and increased access to health services. The training, support and supervision of VA interviewers should be prioritized if VA is taken to scale. Initial and ongoing community engagement is recommended in addition to engaging ethical, legal, health and policy personnel in developing protocols and systems. Integrating rigorous research while cautiously moving forward is recommended to ensure systems and responses to concerns are relevant to contexts. (shrink) | |
Clinical work in Alcohol and Other Drugs has not generally been an area of focus for ethicists. Likewise, ethics is not usually part of Alcohol and Other Drugs training or practice. This means that resources available to Alcohol and Other Drugs clinicians navigating ethical challenges are not widely available. This paper describes a systematic review of literature at the intersection of ethics and clinical practice in Alcohol and Other Drugs. The review will potentially benefit Alcohol and Other Drug practitioners by (...) outlining what resources currently available and will also highlight potential directions for future research. The review searched for all published work in ethics at the intersection with Alcohol and Other Drugs. Searches within academic databases, the World Wide Web, and within journal Tables of Contents identified 18 relevant papers from 1985 onwards. An inductive process of categorisation produced two categories of this literature. The first was codes of ethics, further divided into rule-based codes (n = 4) and principle-based codes (n = 10). The second category was of empirical ethics (n = 4). Rule-based codes are not considered useful to practitioners. They can discourage reflection and potential irrelevance of rules. Principle-based codes are more useful, and principles specific to Alcohol and Other Drugs were identified in some literature. Empirical ethics enable the identification of ethics in everyday clinical work, rather than categorising ethics as a special case in particularly challenging circumstances. The four empirical ethics papers describe highly specific situations, guiding practitioners in these areas. This small body of work demonstrates that future research in empirical ethics is of potential benefit to research in ethics and to clinical practice in Alcohol and Other Drugs. (shrink) | |
Forensic mental health services (FMHS) involve restricting certain individual rights to uphold or promote other ethical values – the restriction of liberty in various forms is justified with reference to health and safety of the individual and the community. The tension that arises from this has been construed as a hallmark of the practice and an ever-present quandary for practitioners. Stating this ethical dilemma upfront is a common point of departure for many texts discussing FMHS. But do we run the (...) risk of missing something important if setting the ethical scene rather than exploring it? This paper draws on interviews with three types of interested parties in mental health law proceedings – patients, psychiatrists and public defenders, and seeks to tease out what values are enacted when they describe and discuss experiences of FMHS and court proceedings. In doing so, we find emphasized values such as acceptance, telling it like it is, atonement, normality, and ensuring the future. We find that well-delineated and separate values are not necessarily the basis for decisions. We also find potential for explanation and guidance in bringing ethical discourse closer to everyday practice. (shrink) | |
Bioethics has developed approaches to address ethical issues in health care, similar to how technology ethics provides guidelines for ethical research on artificial intelligence, big data, and robotic applications. As these digital technologies are increasingly used in medicine, health care and public health, thus, it is plausible that the approaches of technology ethics have influenced bioethical research. Similar to the “empirical turn” in bioethics, which led to intense debates about appropriate moral theories, ethical frameworks and meta-ethics due to the increased (...) use of empirical methodologies from social sciences, the proliferation of health-related subtypes of technology ethics might have a comparable impact on current bioethical research. This systematic journal review analyses the reporting of ethical frameworks and non-empirical methods in argument-based research articles on digital technologies in medicine, health care and public health that have been published in high-impact bioethics journals. We focus on articles reporting non-empirical research in original contributions. Our aim is to describe currently used methods for the ethical analysis of ethical issues regarding the application of digital technologies in medicine, health care and public health. We confine our analysis to non-empirical methods because empirical methods have been well-researched elsewhere. Finally, we discuss our findings against the background of established methods for health technology assessment, the lack of a typology for non-empirical methods as well as conceptual and methodical change in bioethics. Our descriptive results may serve as a starting point for reflecting on whether current ethical frameworks and non-empirical methods are appropriate to research ethical issues deriving from the application of digital technologies in medicine, health care and public health. (shrink) | |
Definition of the problem The acquisition of technical and research skills can be promoted in particular in courses that confront students with complex problems. In this article, we present didactic reflections on learning through self-organized inquiry in empirical medical ethics. Arguments Based on the theory of pragmatism, we show how a specific form of research-based learning courses can be realized to promote medical ethical skills. We focus on projects in which students can experience the process of conducting empirical–ethical research. Conclusion (...) Research-based learning through self-organized inquiry courses offer great potential, especially with regard to expanding students’ reflexive and reflective competencies. We discuss the inclusion of such facultative courses in the medical ethics curriculum with regard to its contextual challenges. (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) | |
Background Psychedelic medicine is a rapidly growing area of research and policy change. Australia recently became the first country to legalize the prescription of psychedelics and serves as a case study of issues that may emerge in other jurisdictions. Despite their influence as a stakeholder group, there has been little empirical exploration of psychedelic researchers’ views on the development of psychedelic research and the ethical concerns. Methods We thematically analysed fourteen interviews with Australian psychedelic researchers. Results Three themes were constructed (...) from the data: 1) coming out of the shadow of the 1960s, 2) challenges and affordances in engaging stakeholders, and 3) growing pains in innovation and translation. Conclusion The results illustrated tensions arising from the rapid growth of psychedelic research from a small group of dedicated individuals with a similar worldview, to a multi-interest, regulated industry. Participants’ experiences and viewpoints were influenced by the history of psychedelic research, and this was met with an overarching concern for protecting the field from premature discontinuation, as well as maximizing potential positive impacts. Targets for stakeholder collaboration and initiatives to support responsible innovation in psychedelics include equitable access, sustainable industry involvement, productive research agendas, responsible reporting of evidence, and risk-taking within the relative safety of clinical trials. (shrink) | |
Engagement with genomic medicine and research has increased globally during the past few decades, including rapid developments in Sri Lanka. Genomic research is carried out in Sri Lanka on a variety of scales and with different aims and perspectives. However, there are concerns about participants' understanding of genomic research, including the validity of informed consent. This article reports a qualitative study aiming to explore the understanding, knowledge, and attitudes of the Sri Lankan public towards genomic medicine and to inform the (...) development of an effective and appropriate process for informed consent in that setting. Purposive sampling was employed. Participants were recruited from a sub-group of the public in Colombo, Sri Lanka who had either consented or refused to donate genetic material for a biobank. Data were collected using face-to-face semi-structured interviews. Interview data were transcribed verbatim and translated into English. Conventional content analysis was used. The analysis developed three key themes: a) ‘Scientific literacy’ describes an apparent lack of scientific knowledge that seems to affect a participant’s ability to understand the research, b) ‘Motivation’ describes narratives about why participants chose (not) to take part in the research, despite not understanding it, and c) ‘Trust’ describes how trust served to mitigate the apparent ethical deficit created by not being fully informed. In this article, we argue that informed trust is likely an acceptable basis for consent, particularly in settings where scientific literacy might be low. However, researchers must work to be worthy of that trust and ensure that misconceptions are actively addressed. (shrink) |
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