Surveillance programs supporting the management of One Health issues such as antibiotic resistance are complex systems in themselves. Designing ethical surveillance systems is thus a complex task (retroactive and iterative), yet one that is also complicated to implement and evaluate (e.g., sharing, collaboration, and governance). The governance of health surveillance requires attention to ethical concerns about data and knowledge (e.g., performance, trust, accountability, and transparency) and empowerment ethics, also referred to as a form of responsible self-governance. Ethics in reflexive governance (...) operates as a systematic critical-thinking procedure that aims to define its value: What are the “right” criteria to justify how to govern “good” actions for a “better” future? The objective is to lay the foundations for a methodological framework in empirical bioethics, the rudiments of which have been applied to a case study to building reflexive governance in One Health. This ongoing critical thinking process involves “mapping, framing, and shaping” the dynamics of interests and perspectives that could jeopardize a “better” future. This paper proposes to hybridize methods to combine insights from collective deliberation and expert evaluation through a reflexive governance functioning as a community-based action-ethics methodology. The intention is to empower individuals and associations in a dialogue with society, which operation is carried out using a case study approach on data sharing systems. We based our reasoning on a feasibility study conducted in Québec, Canada (2018–2021), envisioning an antibiotic use surveillance program in animal health for 2023. Using the adaptive cycle and governance techniques and perspectives, we synthesize an alternative governance model rooted in the value of empowerment. The framework, depicted as a new “research and design (R&D)” practice, is linking operation and innovation by bridging the gap between Reflexive, Evaluative, and Deliberative reasonings and by intellectualizing the management of democratizing critical thinking locally (collective ethics) by recognizing its context (social ethics). Drawing on the literature in One Health and sustainable development studies, this article describes how a communitarian and pragmatic approach can broaden the vision of feasibility studies to ease collaboration through public-private-academic partnerships. The result is a process that “reassembles” the One Health paradigm under the perspective of global bioethics to create bridges between the person and the ecosystem through pragmatic ethics. (shrink)

This chapter contains sections titled: Case Studies and Mid‐level Principles Justifying the Choice of an Ethical Theory References Further reading.

Well and Good presents a combination of "classic" and little-known but real-life cases. Included are a range of cases involving nurses and other health professionals as well as many involving doctors. The cases in the main body of the book are accompanied by the editors' impartial discussions of the issues involved. The final section is comprised of unanalysed cases for further study. For the new edition, the introduction has been expanded to include discussions of feminist bioethics and of virtue (...) ethics, alongside the Kantian, Rossian and utilitarian frameworks discussed in previous editions. Most of the existing cases have been updated to reflect these additional foci, and four analysed cases have been added. Several cases have been added to the group of unanalysed cases, which now includes questions for discussion. Among cases new to this edition are the "mercy killing" case of Robert Latimer, the assisted suicide of Sue Rodriguez, the pregnancy solvent-abuse case of Ms. G., and a case involving sex-selection and abortion on gender grounds. (shrink)

Biomass such as crops and agricultural waste is increasingly used as the primary resource for products like bioplastics and biofuels. Incorporating the needs, knowledge, skills and values of biomass producers in the design of global value chains – the steps involved in creating any finished product from design to delivery – can contribute to sustainability, reliability and fairness. However, how to involve biomass producers, especially if they are resource poor, remains a challenge. To make sure that inclusion in global biobased (...) value chains is both fair and effective, the capabilities of relevant actors need to be taken into account, especially of those producing biomass. Access to resources determines to what extent a specific actor can participate in a global value chain. Therefore, differences in capabilities should be a central consideration when new (biobased) value chains are designed. Using the capability approach as an ethical framework to realize inclusion, we discern three complementary strategies for setting up inclusive value chains. Firstly, designing for local conversion factors second, providing adaptive design for new capabilities, and third, investing in local conversion factors. Applying these strategies can lead to context-sensitive design of biorefineries that allow for true inclusion of local stakeholders. We support these claims with reference to case-studies of sugarcane production in Jamaica, modified tobacco in South Africa and the non-edible parts of corn (stover) in the US. (shrink)

Using a case-study involving bioethics and LGBTQ+ family-making, I demonstrate the appeal of a pragmatist ethics approach to bioethics. On the specific pragmatist view I offer, ethical progress is a matter of overcoming ethical problems. Ethical problems are here understood as conflicts that arise as we attempt to live out our values in the natural and social world and which prompt us to reflect upon and sometimes reinterpret or revise our values or practices. Pragmatism is inherently nonideal (...) in its theoretical approach, since it holds that the relevant conflicts that prompt moral inquiry are not conflicts among abstract ideals, but practical conflicts that arise from our interaction with the world. Ideals alone, then, cannot be a proper guide to bioethical progress. After laying out this approach to moral theorizing in more detail, I take up a case study, focusing on the value of genetic relations within families and the use of reproductive technologies to allow LGBTQ+ people to produce biologically related children. I use this case to show the value of nonideal approaches to bioethics. More specifically, I argue that pragmatism—as a nonideal theory—instructs us to evaluate these issues and family-making practices by considering the situatedness of LGBTQ+ people in a heteronormative society, and the ways in which that particular context produces practical conflicts as LGBTQ+ people and families attempt to live out their values in the social world. (shrink)

As readers of Theoretical Medicine and Bioethics undoubtedly know, edited books can be highly uneven in their quality, with some chapters excelling in content, depth, and readability while others languish in mediocrity. Volumes in an annually issued series run an even greater risk of suffering the plague of inferiority, especially after many years of fame and success. End-of-Life Ethics: A Case Study Approach clearly overcomes these maladies and provides readers with an excellent collection of well-written, thought-provoking essays.The Hospice (...) Foundation of America launched its annual bereavement teleconference two decades ago, publishing a book each year to accompany that educational event. Dubbed the “Living with Grief” series, every volume includes chapters written by a diversity of clinicians and scholars in the care of the dying and bereaved. The series has been unique in its approach to bridge scholarly understandings with practical clinical application.This volume takes a unique .. (shrink)

Metaphors used to describe new technologies mediate public understanding of the innovations. Analyzing the linguistic, rhetorical, and affective aspects of these metaphors opens the range of issues available for bioethical scrutiny and increases public accountability. This article shows how such a multidisciplinary approach can be useful by looking at a set of texts about one issue, the use of a newly developed technique for genetic modification, CRISPRcas9.

Synthetic biology (synbio) involves designing and creating new living systems to serve human ends, using techniques including molecular biology, genomics, and engineering. Existing bioethical analyses of synbio focus largely on balancing benefits against harms, the dual-use dilemma, and metaphysical questions about creating and commercializing synthetic organisms. We argue that these approaches fail to consider key feminist concerns. We ground our normative claims in two case studies, focusing on the public good, who holds and wields power, and synbio research projects’ particularity (...) and context. Attention to feminist concerns is essential for synbio to realize its potential in ethically justifiable ways. (shrink)

Some public health behavioral intervention research studies involve deception. A methodological imperative to minimize bias can be in conflict with the ethical principle of informed consent. As a case study, we examine the specific forms of deception used in three online randomized controlled trials evaluating brief alcohol interventions. We elaborate our own decision making about the use of deception in these trials, and present our ongoing findings and uncertainties. We discuss the value of the approach of pragmatism for examining (...) these kinds of ethical issues that can arise in research on public health interventions. (shrink)

This article aims to develop a Lacanian approach to bioethics. Point of departure is the fact that both psychoanalysis and bioethics are practices of language, combining diagnostics with therapy. Subsequently, I will point out how Lacanian linguistics may help us to elucidate the dynamics of both psychoanalytical and bioethical discourse, using the movie One flew over the Cuckoo’s Nest and Sophocles’ tragedy Antigone as key examples. Next, I will explain the ‘topology’ of the bioethical landscape with the (...) help of Lacan’s three dimensions: the imaginary, the symbolical and the real. This will culminate in an assessment of the dynamics of bioethical discourse with the help of Lacan’s theorem of the four discourses. Bioethics, I will argue, is not a homogeneous discourse. Rather, four modalities of bioethical discourse can be distinguished, all of them displaying specific weaknesses and strengths, opportunities and threats. This will be elucidated with the help of two case studies, namely the debates on human reproductive technologies and on the use of animals as biomedical research models. (shrink)

Looks at ethical procedure in the choices and decisions made by nurses with regard to such questions as obeying doctors, covering up of a colleague's mistakes, recent developments in foetal surgery and whether the nurse's advocate role is tenable in practice. These questions are taken from the personal case studies recounted by 450 nurses in Britain and North America. The issues are to be found in many hospital situations and are faced in day-to-day practice by student and qualified nurses. A (...) commentary is provided on the ethical principles involved. (shrink)

BackgroundVerbal autopsy is a pragmatic approach for generating cause-of-death data in contexts without well-functioning civil registration and vital statistics systems. It has primarily been conducted in health and demographic surveillance systems (HDSS) in Africa and Asia. Although significant resources have been invested to develop the technical aspects of verbal autopsy, ethical issues have received little attention. We explored the benefits and burdens of verbal autopsy in HDSS settings and identified potential strategies to respond to the ethical issues identified.MethodsThis research (...) was based on a case study approach centred on two contrasting HDSS in Kenya and followed the Mapping-Framing-Shaping Framework for empirical bioethics research. Data were collected through individual interviews, focus group discussions, document reviews and non-participant observations. 115 participants were involved, including 86 community members (HDSS residents and community representatives), and 29 research staff (HDSS managers, researchers, census field workers and verbal autopsy interviewers).ResultsThe use of verbal autopsy data for research and public health was described as the most common potential benefit of verbal autopsy in HDSS. Community members mentioned the potential uses of verbal autopsy data in addressing immediate public health problems for the local population while research staff emphasized the benefits of verbal autopsy to research and the wider public. The most prominent burden associated with the verbal autopsy was emotional distress for verbal autopsy interviewers and respondents. Moral events linked to the interview, such as being unsure of the right thing to do (moral uncertainty) or knowing the right thing to do and being constrained from acting (moral constraint), emerged as key causes of emotional distress for verbal autopsy interviewers.ConclusionsThe collection of cause-of-death data through verbal autopsy in HDSS settings presents important ethical and emotional challenges for verbal autopsy interviewers and respondents. These challenges include emotional distress for respondents and moral distress for interviewers. This empirical ethics study provides detailed accounts of the distress caused by verbal autopsy and highlights ethical tensions between potential population benefits and risks to individuals. It includes recommendations for policy and practice to address emotional and moral distress in verbal autopsy. (shrink)

Leadership and governance structures for any organisations involved in God’s mission need to come under review because of the growing influences of the inter-connected globalised world. As Christianity moved farther away from the Christendom model of centralised control to other models of leadership and governance, other paradigms have been proposed along the way. One is called polycentric leadership and governance and is based upon principles of polycentrism. Using a case study approach assists in giving contexts for assisting the understanding (...) of polycentrism in a world where Christian mission is adapting in a rapidly changing polycentric world. The case study explores leadership, governance and specific focus of one geographic region all within the context of the Wycliffe Global Alliance. (shrink)

Business ethics exists only because people do business—hence applied ethics—and like other forms of applied ethics, it is based on two poles: (ethical) theory and (entrepreneurial) practice. But what is their exact relationship? And what about the role of the case itself, which is always a narrative? Case studies are neither merely practical nor purely theoretical. Education and training as well as academic and popular debate regarding business ethics often involve the use of case studies. This contribution is a hermeneutically (...) oriented exploration of the role case studies play in business ethics training. To that end, I will introduce an interpretative concept Paul Ricoeur developed in his 1986 Du texte à l’action and his 1965 study of Freud De l’interprétation. (shrink)

The integration of artificial intelligence into bioethics education represents a new pedagogical approach that addresses complex moral issues in healthcare. The use of AI-driven platforms like ChatGPT in bioethics education can enhance critical thinking and decision-making skills among students by providing a diverse range of perspectives and solutions. To assess the ability of ChatGPT-4 to understand and resolve ethical dilemmas using validated clinical case vignettes, thereby determining its suitability as a teaching aid in bioethics. Ten clinical (...) scenarios, each with inherent ethical issues, were presented to ChatGPT-4. These scenarios were expert-validated to ensure relevance and complexity. ChatGPT's responses were evaluated by two blinded external raters to eliminate bias. The assessment criteria included identification of bioethical principles, recognition of stakeholders and their outcomes, and comprehension of ethical and legal frameworks. Additionally, the quality of responses was scored on a scale of 1–10. ChatGPT showed proficiency in identifying the pertinent bioethical principles and stakeholders involved in the ethical dilemmas presented. It achieved an overall score of 84.5%, with high marks for its analytical capabilities in complex scenarios. However, the study identified areas for improvement, particularly in proposing comprehensive solutions and alternative actions. ChatGPT demonstrates potential as an effective tool for bioethics education, capable of guiding learners through the resolution of ethical issues in clinical practice. However, to fully integrate ChatGPT into bioethics education, it requires enhancements in delivering detailed, actionable guidance in ethical decision-making. Future development should focus on refining ChatGPT’s ability to offer nuanced solutions aligned with patient values and clinician needs. (shrink)

This unique textbook utilizes an integrated, case-based approach to explore how the domains of bioethics, public health and the social sciences impact individual patients and populations. It provides a structured framework suitable for both educators (including course directors and others engaged in curricular design) and for medical and health professions students to use in classroom settings across a range of clinical areas and allied health professions and for independent study. The textbook opens with an introduction, describing the intersection (...) of ethics and public health in clinical practice and the six key themes that inform the book's core learning objectives, followed by a guide to using the book. It then presents 22 case studies that address a broad spectrum of patient populations, clinical settings, and disease pathologies. Each pair of cases shares a core concept in bioethics or public health, from community perspectives and end-of-life care to medical mistakes and stigma and marginalization. They engage learners in rigorous clinical and ethical reasoning by prompting readers to make choices based on available information and then providing additional information to challenge assumptions, simulating clinical decision-making. In addition to providing a unique, detailed clinical scenario, each case is presented in a consistent format, which includes learning objectives, questions and responses for self-directed learning, questions and responses for group discussion, references, and suggested further reading. All cases integrate the six themes of patient- and family-centered care; evidence-based practice; structural competency; biases in decision-making; cultural humility and awareness of the culture of medicine; and justice, social responsibility and advocacy. The final section discusses some challenges to evaluating courses and learning encounters that adopt the cases and includes a model framework for learner assessment. (shrink)

A truly global bioethics involves cooperation and collaboration among countries. Most of the articles published in bioethics journals address a problem that exists in one or more countries, but the articles typically do not discuss solutions that require collaboration or cooperation. COVAX is one example of proposed international cooperation related to the current COVID-19. pandemic. Yet it is evident that nations have been proceeding on their own with little, if any collaboration. Despite international research ethics guidance from the (...) World Health Organization, an article published under WHO auspices violates an ethical principle rejecting “double standards” in the conduct of global research. The COVID pandemic provides an opportunity for countries to learn from the recent lack of international cooperation and employ a multi-national strategy in future global health crises. (shrink)

This article evaluates the oversight of drugs and medical devices by the U.S. Food and Drug Administration using an integration of public policy, law, and bioethics approaches and employing multiple assessment criteria, including economic, social, safety, and technological. Throughout, assessments employing both the multiple criteria and a method of expert elicitation are combined with the existing literature, case law, and regulations providing an integrative historical case study approach. The goal is to provide useful information from multiple disciplines and (...) perspectives to guide discussions regarding appropriate oversight frameworks for nanobiotechnology applications under the FDA’s purview. (shrink)

Medical-legal partnerships (MLPs) — collaborative endeavors between health care clinicians and lawyers to more effectively address issues impacting health care — have proliferated over the past decade. The goal of this interdisciplinary approach is to improve the health outcomes and quality of life of patients and families, recognizing the many non-medical influences on health care and thus the value of an interdisciplinary team to enhance health. This article examines the unique, interrelated ethical issues that confront the clinical and legal (...) partners involved in MLPs. We contend that the ethical precepts of the clinical and legal professions should be seen as opportunities, not barriers, to further the interdisciplinary nature of MLPs. The commonalities in ethical approaches represent a potential bridge between legal and health care advocacy for patient/client well-being. Bioethics has a role to play in building and analyzing this bridge: bioethics may serve as a discourse and method to enhance collaboration by highlighting common ethical foundations and refocusing legal and clinical partners on their similar goals of service for patients/clients. This article explores this bridging role of bioethics, through a series of case studies. It concludes with recommendations to strengthen the collaborations. (shrink)

To achieve effective stakeholder governance in the context of international social accountability certification requires constructing a network of agreement. In a case study of a small-to-medium-sized enterprise, we examine managers’ attempts at enrolling participants in the supply chain to investigate how they strive to engage these stakeholders. We adopt actor-network theory and sensemaking theory to develop a novel approach to understanding social accountability standards’ certification in stakeholder networks. We argue that the design and operation of any SA standard across (...) a network requires not only attempts at enrolling other participants in the supply chain but management contextualizing and problematizing the terms of their involvement. (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)

A critical element in building stronger health systems involves strengthening good governance to build capacity for transparent and fair health planning and priority setting. Over the past 20 years, the ethical framework Accountability for Reasonableness has been a prominent conceptual guide in strengthening fair and legitimate processes of health decision-making. While many of the principles embedded within the framework are congruent with Western conceptualizations of what constitutes procedural fairness, there is a paucity in the literature that captures the degree of (...) resonance between these principles and the views of decision makers from non-Western settings; particularly in Africa, where many countries have only recently, within the last 20-30 years, become more democratic. This paper contributes to the ethics literature by examining how Ethiopian decision makers conceptualize fair and legitimate health decision-making, and reflects on the degree of conceptual resonance between these views and the principles embedded in A4R. A qualitative case study approach from three districts in Ethiopia was undertaken. Fifty-eight decision makers from district, regional, zonal, and national levels were interviewed to describe their conceptualization of fairness and legitimacy in the district health planning process. Findings revealed that Ethiopians have a broad conception of fairness and legitimacy that while congruent with procedural justice, also aligned with principles of distributive and organizational justice. Researchers and practitioners seeking to strengthen procedural fairness in health priority setting must therefore recognize the significance of other philosophical dimensions influencing how fairness and legitimacy of health decision-making are constructed within the Ethiopian setting. (shrink)

Artificial intelligence is set to transform healthcare. Key ethical issues to emerge with this transformation encompass the accountability and transparency of the decisions made by AI-based systems, the potential for group harms arising from algorithmic bias and the professional roles and integrity of clinicians. These concerns must be balanced against the imperatives of generating public benefit with more efficient healthcare systems from the vastly higher and accurate computational power of AI. In weighing up these issues, this paper applies the deliberative (...) balancing approach of the Ethics Framework for Big Data in Health and Research. The analysis applies relevant values identified from the framework to demonstrate how decision-makers can draw on them to develop and implement AI-assisted support systems into healthcare and clinical practice ethically and responsibly. Please refer to Xafis et al. in this special issue of the Asian Bioethics Review for more information on how this framework is to be used, including a full explanation of the key values involved and the balancing approach used in the case study at the end of this paper. (shrink)

In this paper we argue the need to reimagine research ethics frameworks to include notions of environmental sustainability. While there have long been calls for healthcareethics frameworks and decision-making to include aspects of sustainability, less attention has focused on howresearchethics frameworks could address this. To do this, we first describe the traditional approach to research ethics, which often relies on individualised notions of risk. We argue that we need to broaden this notion of individual risk to consider issues associated (...) with environmental sustainability. This is because research is associated with carbon emissions and other environmental impacts, both of which cause climate change health hazards. We introduce how bioethics frameworks have considered notions of environmental sustainability and draw on these to help develop a framework suitable for researchers. We provide a case study of data-driven health research to apply our framework. (shrink)

In this article I argue for an interpretive approach to bioethics with critically ill children. I begin by highlighting the dominant Anglo-American bioethical framework that defines standards for ethical care in critically ill children and then outline a critique of this framework. Drawing predominantly on the ideas of Charles Taylor, Michael Walzer and Richard Zaner, I call for a reconception of bioethics and propose an interpretive ‘thick’ framework that is centred on culture and context. Finally, I illustrate (...) this interpretive approach through a comparative study of two cases in pediatric intensive care: the narratives of Marc and Larry. These case studies reveal that ethical dilemmas in pediatric critical care can be traced to relational tensions over respect, trust and power rooted in the disparity of moral horizons among the persons involved. (shrink)

This book provides an original perspective on a range of controversial issues in educational and social research through case studies of multi-disciplinary and mixed-method research involving children, teachers, schools and communities in Europe and the developing world. These case studies from researchers "across continents" and "across disciplines" explore a range of interesting issues, including the relevance of research approaches to very different national settings, and to the kinds of questions being asked; the barriers of language and culture between researcher and (...) researched; articulating the thinking and feelings of very young children; the challenges of dealing with "partiality" of data; issues of identity, subjectivity and reflexivity; and transferring research approaches from one national setting to the problems posed in another. (shrink)

BackgroundPublic health scholars have long called for preparedness to help better negotiate ethical issues that emerge during public health emergencies. In this paper we argue that the concept of ethical preparedness has much to offer other areas of health beyond pandemic emergencies, particularly in areas where rapid technological developments have the potential to transform aspects of health research and care, as well as the relationship between them. We do this by viewing the ethical decision-making process as a behaviour, and conceptualising (...) ethical preparedness as providing a health research/care setting that can facilitate the promotion of this behaviour. We draw on an implementation science and behaviour change model, COM-B, to demonstrate that to be ethically prepared requires having the capability, opportunity, and motivation to work in an ethically prepared way.MethodsWe use two case examples from our empirical research—one pandemic and one non-pandemic related—to illustrate how our conceptualisation of ethical preparedness can be applied in practice. The first case study was of the UK NHSX COVID-19 contact tracing application case study involved eight in-depth interviews with people involved with the development/governance of this application. The second case involved a complex case regarding familial communication discussed at the UK Genethics Forum. We used deductive qualitative analysis based on the COM-B model categories to analyse the transcripbed data from each case study.ResultsOur analysis highlighted that being ethically prepared needs to go beyond merely equipping health professionals with skills and knowledge, or providing research governance actors with ethical principles and/or frameworks. To allow or support these different actors to utilise their skills and knowledge, a focus on the physical and social opportunity is important, as is a better understanding the role of motivation.ConclusionsTo understand ethical preparedness, we need to view the process of ethical decision-making as a behaviour. We have provided insight into the specific factors that are needed to promote this behaviour—using examples from both in the pandemic context as well as in areas of health research and medicine where there have been rapid technological developments. This offers a useful starting point for further conceptual work around the notion of being ethically prepared. (shrink)

As opposed to a ‘one size fits all’ approach, precision medicine uses relevant biological, medical, behavioural and environmental information about a person to further personalize their healthcare. This could mean better prediction of someone’s disease risk and more effective diagnosis and treatment if they have a condition. Big data allows for far more precision and tailoring than was ever before possible by linking together diverse datasets to reveal hitherto-unknown correlations and causal pathways. But it also raises ethical issues relating (...) to the balancing of interests, viability of anonymization, familial and group implications, as well as genetic discrimination. This article analyses these issues in light of the values of public benefit, justice, harm minimization, transparency, engagement and reflexivity and applies the deliberative balancing approach found in theEthical Framework for Big Data in Health and Research to a case study on clinical genomic data sharing. Please refer to that article for an explanation of how this framework is to be used, including a full explanation of the key values involved and the balancing approach used in the case study at the end. Our discussion is meant to be of use to those involved in the practice as well as governance and oversight of precision medicine to address ethical concerns that arise in a coherent and systematic manner. (shrink)

BackgroundFor children with life-limiting conditions who are unable to participate in decision-making, decisions are made for them by their parents and paediatricians. Shared decision-making is widely recommended in paediatric clinical care, with parents preferring a collaborative approach in the care of their child. Despite the increasing emphasis to adopt this approach, little is known about the roles and responsibilities taken by parents and paediatricians in this process. In this study, we describe how paediatricians approach decision-making for a (...) child with a life-limiting condition who is unable to participate in decision-making for his/herself.MethodsThis qualitative phenomenological study involved 25 purposively sampled paediatricians. Verbatim transcripts from individual semi-structured interviews, conducted between mid-2019 and mid-2020, underwent thematic analysis. Interviews were based around a case vignette matched to the clinical experience of each paediatrician.ResultsTwo key themes were identified in the exploration of paediatricians' approach to decision-making for children with life-limiting conditions: there is a spectrum of paediatricians’ roles and responsibilities in decision-making, and the specific influences on paediatricians’ choice of approach for end-of-life decisions. In relation to, analysis showed four distinct approaches: non-directed, joint, interpretative, and directed. In relation to, the common factors were: harm to the child, possible psychological harm to parents, parental preferences in decision-making, and resource allocation.ConclusionsDespite self-reporting shared decision-making practices, what paediatricians often described were physician-led decision-making approaches. Adopting these approaches was predominantly justified by paediatricians’ considerations of harm to the child and parents. Further research is needed to elucidate the issues identified in this study, particularly the communication within and parental responses to physician-led approaches. We also need to further study how parental needs are identified in family-led decision-making approaches. These nuances and complexities are needed for future practice guidance and training around paediatric decision-making.Trial registration: Not applicable. (shrink)

BackgroundCurrently a variety of novel scenarios have appeared within nursing practice such as confidentiality of a patient victim of abuse, justice in insolvent patients, poorly informed consent delivery, non-satisfactory medicine outputs, or the possibility to reject a recommended treatment. These scenarios presuppose skills that are not usually acquired during the degree. Thus, the implementation of teaching approaches that promote the acquisition of these skills in the nursing curriculum is increasingly relevant.ObjectiveThe article analyzes an academic model which integrates in the curriculum (...) a series of specific theoretical concepts together with practical skills to acquire the basic ethic assessment competency.Research designThe project includes designing two subjects, General Anthropology and Ethics-Bioethics, with an applied approach in the nursing curriculum. The sequential structure of the curriculum in both subjects is constituted by three learning domains (theoretical, practical, and communicative) with different educational strategies.Ethical considerationsNo significant ethical considerations as this is a discussion paper.FindingsThe model was structured from the anthropology’s concepts and decision-making process, applied to real situations. The structure of the three domains theoretical–practical–communicative is present in each session.DiscussionIt is observed that theoretical domain fosters the capacity for critical analysis and subsequent ability to judge diverse situations. The practical domain reflected two significant difficulties: students’ resistance to internalizing moral problems and the tendency to superficial criticism. The communicative domain has frequently shown that the conflicting points are in the principles to be applied.ConclusionWe conclude that this design achieves its objectives and may provide future nursing professionals with ethical competences especially useful in healthcare practice. The three domains of the presented scheme are associated with the same process used in decision making at individual levels, where the exercise of clinical prudence acquires particular relevance. (shrink)

Conscientious objection has become a divisive topic in recent bioethics publications. Discussion has tended to frame the issue in terms of the rights of the healthcare professional versus the rights of the patient. However, a rights-based approach neglects the relational nature of conscience, and the impact that violating one’s conscience has on the care one provides. Using medical assistance in dying as a case study, we suggest that what has been lacking in the discussion of conscientious objection thus (...) far is a recognition and prioritising of the relational nature of ethical decision-making in healthcare and the negative consequences of moral distress that occur when healthcare professionals find themselves in situations in which they feel they cannot provide what they consider to be excellent care. We propose that policies that respect the relational conscience could benefit our healthcare institutions by minimising the negative impact of moral distress, improving communication among team members and fostering a culture of ethical awareness. Constructive responses to moral distress including relational cultivation of moral resilience are urged. (shrink)

Conscientious objection has become a divisive topic in recent bioethics publications. Discussion has tended to frame the issue in terms of the rights of the healthcare professional versus the rights of the patient. However, a rights-based approach neglects the relational nature of conscience, and the impact that violating one’s conscience has on the care one provides. Using medical assistance in dying as a case study, we suggest that what has been lacking in the discussion of conscientious objection thus (...) far is a recognition and prioritising of the relational nature of ethical decision-making in healthcare and the negative consequences of moral distress that occur when healthcare professionals find themselves in situations in which they feel they cannot provide what they consider to be excellent care. We propose that policies that respect the relational conscience could benefit our healthcare institutions by minimising the negative impact of moral distress, improving communication among team members and fostering a culture of ethical awareness. Constructive responses to moral distress including relational cultivation of moral resilience are urged. (shrink)

This article considers aspects of a development aid that provides medical support to strengthen pediatric orthopedics in Rwanda. We present part of the Afriquia foundation work, a nonprofit foundation from Poland involved in supporting the medical sector in Rwanda as a sign of global solidarity and the human right to health. The main foundation's activity is the treatment of orthopedic problems among Rwandan citizens. We present a case study of two children under the care of the Afiquia foundation. 11‐year‐old Seraphine (...) treated due to the consequences of right tibia osteomyelitis and 11‐year‐old Lavi suffering from osteogenesis imperfecta. Both children were treated surgically in Poland due to Rwanda's lack of treatment possibilities. After the applied treatment, Seraphine walks correctly without crutches and can attend school and thrive among her peers. Lavi has not sustained any fragility fracture since the surgery in Poland. He is healthy and constantly ongoing his rehabilitation including gait training. The described cases initiated development aid in Rwanda, supplying hospitals with orthopedic implants and training medical staff. The growing number of humanitarian crises across the globe and the people affected requires increasing organizations involved in providing relief. The emphasis should be on global education, aiming to make the recipients reflect and prepare them to face humanitarian crises. (shrink)

A communitarian approach to bioethics adds a core value to a field that is often more concerned with considerations of individual autonomy. Some interpretations of liberalism put the needs of the patient over those of the community; authoritarian communitarianism privileges the needs of society over those of the patient. Responsive communitarianism’s main starting point is that we face two conflicting core values, autonomy and the common good, and that neither should be a priori privileged, and that we have (...) principles and procedures that can be used to work out this conflict but not to eliminate it. This discussion uses the debate in the US over funding for entitlements as a case study to apply the values of communitarian bioethics. (shrink)

National legislation, as well as arguments of experts, in Germany and Israel represent opposite regulatory approaches and positions in bioethical debates concerning end-of-life care. This study analyzes how these positions are mirrored in the attitudes of laypeople and influenced by the religious views and personal experiences of those affected. We qualitatively analyzed eight focus groups in Germany and Israel in which laypeople were asked to discuss similar scenarios involving the withholding or withdrawing of treatment, physician-assisted suicide, and euthanasia. In both (...) countries, respect for patient autonomy and patients’ wishes to die with dignity found broad consent. Laypeople argued in favor of accepting such wishes when they were put down in an advance directive. Laypeople in non-religious groups in both countries argued on the basis of a respect for autonomy for the possibility of euthanasia in severe cases but, at the same time, cautioned against its possible misuse. National contrast was apparent in the moral reasoning of lay respondents concerning the distinction between withholding and withdrawing treatment. The modern religious laypeople in Israel, especially, argued strongly, on the basis of the halakhic tradition, against allowing the withdrawal of treatment in accord with a patient’s wish. We conclude by discussing the emergent notion of shared responsibility and views of professional responsibility, which we connect through relevant cultural themes such as religion and national culture. (shrink)

During the course of evolution, variations of a protein sequence is an ongoing phenomenon however limited by the need to maintain its structural and functional integrity. Deciphering the evolutionary path of a protein is thus of fundamental interest. With the development of new methods to visualize high dimension spaces and the improvement of phylogenetic analysis tools, it is possible to study the evolutionary trajectories of proteins in the sequence space. Using the data-driven high-dimensional scaling method, we show that it is (...) possible to predict and represent potential evolutionary trajectories by representing phylogenetic trees into a 3D projection of the sequence space. With the case of the aminodeoxychorismate synthase, an enzyme involved in folate synthesis, we show that this representation raises interesting questions about the complexity of the evolution of a given biological function, in particular concerning its capacity to explore the sequence space. (shrink)

This article evaluates the oversight of drugs and medical devices by the U.S. Food and Drug Administration using an integration of public policy, law, and bioethics approaches and employing multiple assessment criteria, including economic, social, safety, and technological. Criteria assessment and expert elicitation are combined with existing literature, case law, and regulations in an integrative historical case studies approach. We then use our findings as a tool to explore possibilities for effective oversight and regulatory mechanisms for nanobiotechnology. Section (...) I describes oversight mechanisms for human drugs and medical devices and presents current nanotechnology products. Section II describes the results of expert elicitation research. Section III highlights key criteria and relates them to the literature and larger debate. We conclude with broad lessons for the oversight of nanobiotechnology informed by Sections I-III in order to provide useful analysis from multiple disciplines and perspectives to guide discussions regarding appropriate FDA oversight. (shrink)

This paper presents a case study carried out at Sofia University in Bulgaria, describing the relationship between two developments, firstly an expanding involvement with online learning and e-assessment, and secondly the development of institutional approaches to academic integrity. The two developments interact, the widening use of e-learning and e-assessment raising new issues for academic integrity, and the technology providing new tools to support academic integrity, with the involvement in technological developments acting as a catalyst for changes in approaches (...) to academic integrity. The aim of this study is to describe in what ways the integration of technologies for student authentication and authorship checking in this university has begun to influence teachers’ approach to academic integrity, and has also helped to identify specific issues that need to be resolved for the future of academic integrity in the university. Data collected during the implementation of pilots for the project TeSLA - An adaptive trust-based e-assessment system - enabled an examination of the perspectives of administrators, teachers and students on approaches to cheating and plagiarism, and on possible future directions. The data suggests that the piloting of the TeSLA system has triggered a deepening consideration of approaches to academic integrity, and has also helped to identify important issues for future developments. (shrink)

Urban agriculture is a promising avenue for food system change; however, projects often struggle with a lack of volunteers—limiting both their immediate goals and the broader movement-building to which many alternative food initiatives (AFIs) aspire. In this paper, I adopt a case study approach focusing on Farm X, an urban farm with a strong volunteer culture located in Tāmaki-Makaurau Auckland, New Zealand’s largest city. Drawing on a significant period of researcher participation and 11 in-depth interviews with volunteers and project (...) coordinators, I first contextualise and explore the history of Farm X, then offer themes to describe key factors which help or hinder their volunteer engagement. Engagement is helped by strong leadership, learning by doing, socialising around plants, and contributing to a movement. Conversely, engagement is hindered by time scarcity, economic hurdles, and struggles over direction. Drawing on McClintock’s (Local Environ 19(2): 147–171, 2014, 10.1080/13549839.2012.752797) insights into the hybrid and contradictory nature of urban agriculture as a tool for social change, the paper continues with a discussion of two important trade-offs involved in both farm management and the movement building promoted by Farm X: focused leadership verses volunteer agency; and asking more verses less of volunteers. Finally, I suggest several avenues that may be useful for other urban agriculture projects interested in movement building. (shrink)

In this article we address the social value of bioethics research and show how a participatory approach can achieve social impact for a wide audience of stakeholders, involving them in a process of joint moral learning. Participatory bioethics recognizes that research co-produced with stakeholders is more likely to have impact on healthcare practice. These approaches aim to engage multiple stakeholders and interested partners throughout the whole research process, including the framing of ideas and research questions, so that (...) outcomes are tailored to the interests and context, and the type of impact stakeholders envisage. There is an emphasis on realizing social change through the conduct of the research, and it is believed that the engagement of stakeholders in the research process will promote their intrinsic motivation to change their practice. Another distinctive feature of participatory bioethics research is that its central normative commitment is to reflection and dialogue, not to a particular substantive ethical approach. In reflection and dialogue there is an emphasis on inclusion and the co-production of knowledge. Furthermore, empirical and normative research are combined, and there is a deliberate attempt to give voice to otherwise marginalized positions. This provides a model of social impact which is relevant not only for bioethics research, but also for other areas of health care research. We will show the merits of a participatory approach to bioethics research with a case example. It concerns the reduction of coercion and in particular seclusion in Dutch mental healthcare. (shrink)

Outsourcing clinical trials sponsored by pharmaceutical companies from industrialized countries to low- -income countries – summarized as transnational biomedical research – has lead to many concerns about ethical standards. Whether study participants are particularly vulnerable is one of those concerns. However, the concept of vulnerability is still vague and varies in its definition. Despite the fact that important international ethical guidelines such as the Declaration of Helsinki by the World Medical Association or the Ethical Guidelines for Biomedical Research Involving Human (...) Subjects by the Council of International Organizations of Medical Sciences refer to vulnerability as ethical principle, each of their approaches are different. To overcome these shortcomings, we analyze and unite different approaches of vulnerability and develop practical criteria in order to operationalize the concept especially for the context of TBR. These criteria refer to the context of a study as well as the characteristics and the current living situation of study participants. Based on a case study of an HIV-vaccine-trial conducted in India we demonstrate how those criteria can be applied in a retrospective way to identify potential ethical conflicts. The criteria can also indicate a prospective function for ethical pre-assessment. For this, we provide an outlook for three major topics: 1. Vulnerability as a normative concept: Different ways of protection; 2. The relevance of transparency and 3. Vulnerability as an instrument to increase decision participation of human subjects. (shrink)

Background The birth plan is a tool that allows the self-learning and thoughtful analysis of the women during the birthing process, facilitating their making of decisions and participation, in agreement with the bioethical principles of autonomy and no malfeasance. Goal: To understand the perception and satisfaction of women who presented a birth plan. Methodology: Qualitative, descriptive, observational, retrospective and cross-sectional study. The population of the study was composed of 21 women who presented a birth plan regulated in a Hospital ever (...) since the recording of the presentation of the birth plan was started until 2015. Place: Cartagena. Techniques/methods: Semistructured interview. Results-Discussion: Most women considered the plan as a useful self-learning tool on the meaning of the birthing process, as it favored the communication between the expectant mothers/health professionals. Our informants sought information related to the birthing process from informal sources; most perceived a level of respect of their wishes during the process of giving birth. The use of the birth plan did not imply the perception of loss of the degree of control during the birth, although attention to the written document could be improved. Conclusions The use of the birth plan is a very satisfactory and useful experience for their involvement in their self-care, although in some cases, the births did not proceed according to their plans. Nevertheless, the prevalence of the principle of Non-Malfeasance over Autonomy was evidenced. (shrink)

The purpose of this paper is to show an application of variety engineering in the social realm. It focuses on reducing environmental complexity by catalysing self-organizing processes. This catalysis is based on the use of Sen and Nussbaum’s capabilities approach. By doing this an organization may improve the quality of the relations with their clients by transforming environmental agents into new suppliers. This approach opens a new dimension of social responsibility for organizations. A particular case is presented in (...) which a regional university in Colombia faces the challenge of attending low-income students coming from small municipalities. They designed a strategy to offer low-cost housing and a daily balanced meal without using the university's own resources. Instead, they managed to involve some agents of the community by developing their capabilities. This kind of variety engineering shows the possibility of new forms of social responsibility in universities by incorporating the capabilities approach into their managerial practices. This is something that is currently under study in other universities. (shrink)

The report produced by the National Bioethics Advisory Commission at the request of President Bill Clinton, titled Cloning Human Beings, provides a good example of the two-pronged approach to religion in bioethics. The report merits careful scrutiny precisely because of the deftness with which it appears to negotiate the thorny questions surrounding the role of religion in public policy. Analysis of the structure, arguments, and rhetoric of the report reveals the theoretical and practical inadequacy of the currently (...) reigning two-pronged approach to the role of religious perspectives in the field of bioethics. (shrink)

Shell’s efforts to integrate the stakeholder management approach into its business practice worldwide involved the gradual development of a long-term, comprehensive strategy. This paper draws on stakeholder management theory and Shell’s experience to identify critical factors that contribute to the process of institutionalizing the principle of stakeholder management in a global company. A key lesson to be drawn from the case is the necessity of ensuring that the process allows for continuous learning, adaptation, and refinement.

This paper addresses the biosemiotic dimensions of human relationship with captive animals and aims to uncover how these factors influence handling practices and human-animal interactions within zoological gardens. Zoological gardens are quintessential hybrid environments, and as such, they are places of interspecies interactions and mutual influences. These interactions are profoundly shaped by human attitudes towards animals. The roots of these attitudes can be found at the cultural and institutional levels as well as at the biosemiotic level. Previous studies have suggested (...) that keepers’ attitudes towards animals have direct influences on their handling style and, consequently, have an impact on animals’ perception of keepers and other humans. This suggests that the type of relationship between keepers and animals can translate into handling styles that may affect animals’ perceptions of humans and worsen or improve their welfare. In this paper, we present a case study involving chimpanzees’ keepers at the Tallinn Zoological Gardens. A series of interviews were conducted, which aimed to uncover the way keepers understand their relationships with captive animals and how this influences handling. This work offers a comparative approach by bringing forward the experiences of keepers who work with various animal species belonging to different taxa and class. Such an approach aims to highlight the biosemiotic factors behind the emergence of different types of keeper-animal relationships. We expect to uncover whether extremely different Umwelten may shape human-animal bonds. By highlighting the agency of animals in daily activities and work routine, we also aim to initiate a discussion on the way animals influence handling practices within zoological gardens. Our objective is to understand how individual animals influence handling practices within zoological gardens. (shrink)

Environmental and sustainability initiatives seek to respond to the challenges of ecological crises and ongoing environmental degradation by supporting students to develop knowledge and dispositions to respond to the challenges of and live in a climate changed world. However, these initiatives are often marginalised in curriculum and hamstrung by inherent tensions such as which worldviews should be prioritised, the incommensurability of some global and local values, and the pursuit of environmental needs in the age of neoliberalism. These challenges become more (...) complex when considering contextual stakeholders. In this paper we focus on the ethical dilemmas associated with environmental and sustainability education in a coal town where mining company sponsorship heralds mixed community response. In doing so, we unpack the contextual and philosophical complexities which create the crucial conditions for a viable normative case study—genuine uncertainty about issues not yet at tipping point, differences of reasonable perspectives and recognisable local concerns. We argue that teacher educators, particularly those with interdisciplinary philosophical insight should look to their local contexts for pressing ethical issues and engage in the development and field testing of their own normative case studies. We make the case that the process behind developing a normative case study involves insight into the relationships between educational ethics, policy, context, and divergent community perspectives. We argue that pedagogy using normative case study to navigate these elements has the potential to develop world-reading teacher deliberation which surpasses proceduralist approaches in teacher education. (shrink)

One challenge involved in integrating so-called ‘non-Western’ philosophies into ‘Western’ philosophical discourse concerns the fact that non-Western philosophical texts frequently differ significantly in style and approach from Western ones, especially those in contemporary analytic philosophy. But how might one bring texts that are written, for example, in a literary, non-expository style, and which do not clearly advance philosophical positions or arguments, into constructive dialogue with those that do? Also, why might one seek to do this in the first place? (...) This paper addresses these questions by means of a case study involving the Daoist classic, theZhuangzi.L’un des défis posés par l’inclusion des soi-disant philosophies «non-occidentales» dans le discours de la philosophie «occidentale» a trait au fait que plusieurs textes philosophiques non-occidentaux diffèrent de façon significative, en termes de style et d’approche, des textes occidentaux, principalement ceux issus de la philosophie analytique contemporaine. Comment établir un dialogue constructif entre des textes écrits de façon littéraire, qui n’ont pas l’allure d’un exposé et qui n’avancent pas clairement des positions ou des arguments philosophiques et des textes qui, au contraire, prennent la forme d’un exposé avançant des positions ou des arguments? Pourquoi, de prime abord, voudrait-on ouvrir un tel dialogue? Cet article pose ces questions par le biais de l’étude du cas du classique taoïste, leZhuāngzǐ. (shrink)