While the bioethics literature demonstrates that the field has spent substantial time and thought over the last four decades on the goals, methods, and desired outcomes for service and training in bioethics, there has been less progress defining the nature and goals of bioethics research and scholarship. This gap makes it difficult both to describe the breadth and depth of these areas of bioethics and, importantly, to gauge their success. However, the gap also presents us with an opportunity to define (...) this scope of work for ourselves and to help shape the broader conversation about the impact of academic research. Because of growing constraints on academic funding, researchers and scholars in many fields are being asked to demonstrate and also forecast the value and impact of their work. To do that, and also to satisfy ourselves that our work has meaningful effect, we must understand how our work can motivate change and how that change can be meaningfully measured. In a field as diverse as bioethics, the pathways to and metrics of change will likewise be diverse. It is therefore critical that any assessment of the impact of bioethics research and scholarship be informed by an understanding of the nature of the work, its goals, and how those goals can and ought to be furthered. In this paper, we propose a conceptual model that connects individual bioethics projects to the broader goals of scholarship, describing the translation of research and scholarly output into changes in thinking, practice, and policy. One of the key implications of the model is that impact in bioethics is generally the result of a collection of projects rather than of any single piece of research or scholarship. Our goal is to lay the groundwork for a thoroughgoing conversation about bioethics research and scholarship that will advance and shape the important conversation about their impact. (shrink)

With its potential to contribute to the ethical governance of AI, eXplainable AI (XAI) research frequently asserts its relevance to ethical considerations. Yet, the substantiation of these claims with rigorous ethical analysis and reflection remains largely unexamined. This contribution endeavors to scrutinize the relationship between XAI and ethical considerations. By systematically reviewing research papers mentioning ethical terms in XAI frameworks and tools, we investigate the extent and depth of ethical discussions in scholarly research. We observe a limited and often superficial (...) engagement with ethical theories, with a tendency to acknowledge the importance of ethics, yet treating it as a monolithic and not contextualized concept. Our findings suggest a pressing need for a more nuanced and comprehensive integration of ethics in XAI research and practice. To support this, we propose to critically reconsider transparency and explainability in regards to ethical considerations during XAI systems design while accounting for ethical complexity in practice. As future research directions, we point to the promotion of interdisciplinary collaborations and education, also for underrepresented ethical perspectives. Such ethical grounding can guide the design of ethically robust XAI systems, aligning technical advancements with ethical considerations. (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)

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

It can be assumed that value judgements, which are needed to judge what is ‘good’ or ‘better’ and what is ‘bad’ or ‘worse’, are involved in every decision-making process. The theoretical understanding and analysis of value judgements is, therefore, important in the context of bioethics, for example, to be able to ethically assess real decision-making processes in biomedical practice and make recommendations for improvements. However, real decision-making processes and the value judgements inherent in them must first be investigated empirically (‘empirical (...) bioethics’). For this to succeed, what exactly a ‘value judgement’ is and of what components it might consist must initially be theoretically clarified. A corresponding conceptual model can then support or even enable empirical data collection and analysis and, above all, subsequent ethical analysis and evaluation. This paper, therefore, presents a value judgement model with its theoretical derivation. It also illustrates its application in an interview study of decision-making between animal experimentation and alternative methods in the context of biomedical research. Though the model itself can be theoretically deepened and extended, the application of the model works in general and helps to uncover what value judgements can enter into decision-making. However, the empirical methods, for example, qualitative interviews, can also be better oriented towards eliciting value judgements (as understood according to the model). Further applications of the model to other topics or by means of other empirical methods are conceivable. (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)

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 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)

One of the challenges of modern healthcare ethics practice is the navigation of boundaries. Practicing healthcare ethicists in the performance of their role must navigate meanings, choices, decisions and actions embedded in complex cultural and social relationships amongst diverse individuals. In light of the evolving state of modern healthcare ethics practice and the recent move toward professionalization via certification, understanding boundary navigation in healthcare ethics practice is critical. Because healthcare ethics is endowed with many boundaries which often delineate concerns about (...) professional expertise and authority, epistemological reflection on the relationship between theory and practice points toward the social context as relevant to the conceptualization of boundaries. The skills of social scientists may prove helpful to provide data and insights into the conceptualization and navigation of clinical ethics qua profession. Empirical ethics research, which combines empirical description (usually social scientific) with normative-ethical analysis and reflection, is a way forward as we engage and reflect upon issues which have implications for practice standards and professionalization of the role. This requires cooperative engagement of the descriptive and normative disciplines to explore our understandings of boundaries in healthcare ethics practice. This will contribute to the ongoing reflection not only as we envision the professional role but to ensure that it is enacted in practice. (shrink)

Volume 20, Issue 4, May 2020, Page 83-85.

In 2014, the editorial board of BMC Medical Ethics came together to devise sections for the journal that would give structure to the journal help ensure that authors’ research is matched to the most appropriate editors and help readers to find the research most relevant to them. The editorial board decided to take a practical approach to devising sections that dealt with the challenges of content management. After that, we started thinking more theoretically about how one could go about classifying (...) the field of medical ethics. This editorial elaborates and reflects on the practical approach that we took at the journal, then considers an alternative theoretically derived approach, and reflects on the possibilities, challenges and value of classifying the field more broadly. (shrink)

Background The convergence of neuroscience, genomics, and data science holds promise to unveil the neurobiology of psychosis and to produce new ways of preventing, diagnosing, and treating psychotic illness. Yet, moral challenges arise in neurobiological research and in the clinical translation of research findings. This article investigates the views of relevant actors in mental health on the moral challenges of accessing neurobiological information in the context of psychosis. Methods Semi-structured individual interviews with two groups: researchers employed in the National Health (...) Service (NHS) or a university in England (n = 14), and mental health professionals employed in NHS mental health services (n = 14). This article compares results in the two groups (total n = 28). Results This article presents findings around three conceptual areas: (1) research ethics as mostly unproblematic, (2) psychosis, neurobiological information, and mental health care, and (3) identity, relationships, and the future. These areas are drawn from the themes and topics that emerged in the interviews across the two groups of participants. Researchers and health professionals provided similar accounts of the moral challenges of accessing—which includes acquisition, communication, and use of—neurobiological information in the context of psychosis. Acquiring neurobiological information was perceived as mostly unproblematic, provided ethical safeguards are put in place. Conversely, participants argued that substantive moral challenges arise from how neurobiological information is delivered—that is, communicated and used—in research and in clinical care. Neurobiological information was seen as a powerful tool in the process through which individuals define their identity and establish personal and clinical goals. The pervasiveness of this narrative tool may influence researchers and health professionals’ perception of ethical principles and moral obligations. Conclusions This study suggests that the moral challenges that arise from accessing neurobiological information in the context of psychosis go beyond traditional research and clinical ethics concerns. Reflecting on how accessing neurobiological information can influence individual self-narratives will be vital to ensure the ethical translation of neuroscience and genomics into mental health. Trial registration The study did not involve a health care intervention on human participants. It was retrospectively registered on 11 July 2018, registration number: researchregistry4255. (shrink)

This is an account of the evolution of ideas and the confluence of support and vision that has eventuated in the founding of the Journal of Empirical Research on Human Research Ethics (JERHRE). Many factors have contributed to the creation of this rather atypical academic journal, including a scientific and administrative culture that finally saw the need for it, modern electronic technology, individuals across the world who were committed to somehow finding common ground between researchers and those charged with ethical (...) oversight of research, a network of helpful colleagues, and a university whose administration gave moral support to the endeavor in a time of fiscal austerity. Perhaps equally important were the decisions to make JERHRE a nonprofit undertaking, to emphasize the implications of empirical research for specific best practices, to serve the educational needs of those concerned with human research, and to seek to stimulate the interest of students in gaining an evidence-based understanding of the research contexts in which they decide to work. This article explores the ‘chemistry’ that has made it possible to develop a somewhat unorthodox journal and set of related activities. (shrink)