Moral Case Deliberations are reflective dialogues with a group of participants on their own moral dilemmas. Although MCD is successful as clinical ethics support, it also has limitations. 1. Lessons learned from individual MCDs are not shared in order to be used in other contexts 2. Moral learning stays limited to the participants of the MCD; 3. MCD requires quite some organisational effort, 4. MCD deals with one individual concrete case. It does not address other, similar cases. These (...) limitations warrant research into complementary ways of providing CES to healthcare professionals. Our research objective was therefore to develop a low threshold CES tool based on a series of MCDs on autonomy in long-term care. We used a qualitative research design in which we analyzed the process and content of a series of MCDs, combined with reflections on the theoretical background of MCD. In total 28 MCDs were analyzed by means of a thematic content analysis. In various rounds of development, the results of the analysis were combined with theoretical reflections on CES. Consequently, the tool was evaluated in three focus groups and adjusted. The CES tool, called ‘moral compass’, guides the users through a series of six subsequent questions in order to methodically reflect on their concrete moral dilemma, in the form of a booklet of 23 pages. It combines a methodical element that encourages and structures a reflection process with a substantive element, including norms, values, options, strategies, and insights regarding dealing with client autonomy. By using data from a series of MCDs, combined with theoretical reflections on MCD, ethics support and moral learning, we developed a thematic, low-threshold CES tool that supports healthcare professionals in daily practice in dealing with moral questions regarding client autonomy. It integrates examples and insights from earlier MCDs on the same topic. The moral compass is not a replacement of, but can be used complementary to MCD. The feasibility and impact of the moral compass need to be investigated in an evaluative follow-up study. The methodology presented in this paper may be used to develop moral compasses on different topics in various healthcare organizations. (shrink)

Military employees face all sorts of moral dilemmas in their work. The way they resolve these dilemmas—how they decide to act based on their moral deliberations—can have a substantial impact both on society and on their personal lives. Hence, it makes sense to support military employees in dealing with these dilemmas. Military organizations already support their personnel by adopting compliance‐based approaches that focus, for instance, on enforcing moral rules. At the same time, however, they struggle to develop value‐based (...) approaches that could foster moral learning by improving employees' understanding of personal values, others' values, and their responsibility for others. Consequently, military employees are not adequately supported in their ethical decision‐making when confronted with complex situations. To address this issue, drawing on a design research approach, we develop and evaluate the use of a value‐based reflection tool to support military employees with their moral decision‐making. The design and evaluation of the value‐based reflection tool were informed by five semistructured interviews, notes on 45 joint reflection meetings with trainers, and evaluation notes of 755 participants. Our findings suggest the value‐based reflection tool is a promising way to foster actors' moral competence in organizational settings by triggering the social mechanisms of reflection, empathy, and psychological safety. This study is the first to illustrate that value‐based ethics support can complement compliance‐based ethics support in a military organization. Furthermore, it demonstrates design research's potential to develop actionable knowledge for ethics support practices in organizations. (shrink)

Background Decision-making competence is a complex concept in the care for transgender and gender diverse adolescents, since this type of care concerns one’s developing gender identity and involves treatment options that often lack international consensus. Even despite competence assessments, moral challenges arise in the decision-making process. Here, traditional forms of clinical ethics support such as moral case deliberation might not fit as these do not provide thematic guidance. This study therefore aimed to develop a practice-oriented ethics (...) class='Hi'>support tool to assist care providers when dealing with moral challenges around decision-making competence in transgender adolescent care. Methods The study followed a participatory design to develop a tool in close collaboration with care providers; they had a say in all phases of development and dissemination. Firstly, nine care providers were interviewed about experienced moral challenges and needs for ethics support. Based on this, the structure and content of the tool was constructed and discussed in two focus group meetings, after which four care providers tested the tool and additional feedback was collected from the team and an advisory board. The final tool was presented to all Dutch care providers in transgender adolescent care. Results Care providers expressed a need for guidance in defining and assessing decision-making competence. Main moral challenges concerned discussing fertility options with young clients, dealing with co-occurring mental health difficulties and the decision-making role of parents. The final tool, named the Competence Consultant, is an interactive pdf containing four parts: (1) Clarify information; (2) Identify doubts and moral questions; (3) Guidance for conversations and (4) Overview and Conclusions. Discussion Developing an ethics support tool in a controversial care setting is highly relevant as it aims to help individual care providers in defining, discussing and dealing with their moral challenges in actual practice. The ‘Competence Consultant’ for transgender care providers contributes to their moral sensitivity and moral competence. It is an example of the development of innovative and integrative forms of thematic ethics support. (shrink)

In their paper (‘ Morisprudence: a theoretical framework for studying the relationship linking moral case deliberation, organisational learning and quality improvement ‘),1 Kok et al addresses an important topic: how to theoretically think about studying the impact of moral case deliberations and how to conceptualise organisational learning? In this article, they aim to develop a theoretical framework that provides empirically assessable hypotheses that describe the relationship between moral case deliberation and care quality at an organisational level. The authors describe care (...) quality mostly in terms of practical wisdom which they aggregate into both individual and organisational morisprudence. Morisprudence is defined as an ongoing formulation of moral judgements. However, it remains a bit unclear how the theoretical framework of Kok et al may lead to empirically assessable hypotheses. Concepts like ‘quality’, ‘quality of care’, ‘practical wisdom’ and ‘individual and organisational morisprudence’ are not described in detail, let alone operationalised in measurable terms. How should we understand morisprudence in empirical terms? What is a good morisprudence? And how should we measure or conclude whether morisprudence has been improved (or not)? The authors rightfully focus on the need for organisational learning during and through Moral Case Deliberation (MCD). Too often, MCD is only described as the discussion of one patient’s case, thereby implicitly suggesting that the learning process only takes place at the level of an individual case. Yet, based on many years of MCD evaluation research, we know from mostly …. (shrink)

BackgroundDespite the recognition that developing artificial intelligence (AI) that is trustworthy is necessary for public acceptability and the successful implementation of AI in healthcare contexts, perspectives from key stakeholders are often absent from discourse on the ethical design, development, and deployment of AI. This study explores the perspectives of birth parents and mothers on the introduction of AI-based cardiotocography (CTG) in the context of intrapartum care, focusing on issues pertaining to trust and trustworthiness.MethodsSeventeen semi-structured interviews were conducted with birth parents (...) and mothers based on a speculative case study. Interviewees were based in England and were pregnant and/or had given birth in the last two years. Thematic analysis was used to analyze transcribed interviews with the use of NVivo. Major recurring themes acted as the basis for identifying the values most important to this population group for evaluating the trustworthiness of AI.ResultsThree themes pertaining to the perceived trustworthiness of AI emerged from interviews: (1) trustworthy AI-developing institutions, (2) trustworthy data from which AI is built, and (3) trustworthy decisions made with the assistance of AI. We found that birth parents and mothers trusted public institutions over private companies to develop AI, that they evaluated the trustworthiness of data by how representative it is of all population groups, and that they perceived trustworthy decisions as being mediated by humans even when supported by AI.ConclusionsThe ethical values that underscore birth parents and mothers’ perceptions of trustworthy AI include fairness and reliability, as well as practices like patient-centered care, the promotion of publicly funded healthcare, holistic care, and personalized medicine. Ultimately, these are also the ethical values that people want to protect in the healthcare system. Therefore, trustworthy AI is best understood not as a list of design features but in relation to how it undermines or promotes the ethical values that matter most to its end users. An ethical commitment to these values when creating AI in healthcare contexts opens up new challenges and possibilities for the design and deployment of AI. (shrink)

Contemporary healthcare practice has been progressively more regulated to increase efficiency, service user safety and practice quality. However, ethical issues in clinical practice that have not been implemented into regulations are undervalued by policymakers and healthcare institutions Considering the issues found by other authors, the use of a simple tool for policymakers to consider recurrent ethical issues could reduce those issues in a policy-driven clinical practice. The lack of tools to support structured ethical assessment of clinical policies was (...) the main reason to create the Clinical Policy Ethics Assessment Tool, but we realised of its possible advantages: limiting ethical dilemmas posed by policies, ensuring ethical practice by the use of policies and developing a consistent process for policymakers, institutions and healthcare professionals. Nonetheless, even if a tool can be implemented and it supports the creation of policies that reduce ethical issues, if the healthcare professionals are not aware of them they will not be implemented and the issues will continue. (shrink)

Contemporary healthcare practice has been progressively more regulated to increase efficiency, service user safety and practice quality. However, ethical issues in clinical practice that have not been implemented into regulations are undervalued by policymakers and healthcare institutions Considering the issues found by other authors, the use of a simple tool for policymakers to consider recurrent ethical issues could reduce those issues in a policy-driven clinical practice. The lack of tools to support structured ethical assessment of clinical policies was (...) the main reason to create the Clinical Policy Ethics Assessment Tool, but we realised of its possible advantages: limiting ethical dilemmas posed by policies, ensuring ethical practice by the use of policies and developing a consistent process for policymakers, institutions and healthcare professionals. Nonetheless, even if a tool can be implemented and it supports the creation of policies that reduce ethical issues, if the healthcare professionals are not aware of them they will not be implemented and the issues will continue. (shrink)

Background Confidentiality is one of the central preconditions for clinical ethics support (CES). CES cases which generate moral questions for CES staff concerning (breaching) confidentiality of what has been discussed during CES can cause moral challenges. Currently, there seems to be no clear policy or guidance regarding how CES staff can or should deal with these moral challenges related to (not) breaching confidentiality within CES. Moral case deliberation is a specific kind of CES. Method Based on experiences and (...) research into MCD facilitators’ needs for ethics support in this regard, we jointly developed an ethics support tool for MCD facilitators: the Confidentiality Compass. This paper describes the iterative developmental process, including our theoretical viewpoints and reflections on characteristics of CES tools in general. Results The content and goals of the ethics support tool, which contains four elements, is described. Part A is about providing information on the concept of confidentiality in MCD, part B is a moral compass with reflective questions, part C focuses on courses of action for careful handling of moral challenges related to confidentiality. Part D contains general lessons, best practices and tips for dealing with confidentiality in future cases. Conclusions This paper concludes with providing some lessons-learned related to developing ethics support tools and some reflections on issues of quality and normativity of ethics support tools. (shrink)

Data access committees (DAC) gatekeep access to secured genomic and related health datasets yet are challenged to keep pace with the rising volume and complexity of data generation. Automated decision support (ADS) systems have been shown to support consistency, compliance, and coordination of data access review decisions. However, we lack understanding of how DAC members perceive the value add of ADS, if any, on the quality and effectiveness of their reviews. In this qualitative study, we report findings from (...) 13 semi-structured interviews with DAC members from around the world to identify relevant barriers and facilitators to implementing ADS for genomic data access management. Participants generally supported pilot studies that test ADS performance, for example in cataloging data types, verifying user credentials and tagging datasets for use terms. Concerns related to over-automation, lack of human oversight, low prioritization, and misalignment with institutional missions tempered enthusiasm for ADS among the DAC members we engaged. Tensions for change in institutional settings within which DACs operated was a powerful motivator for why DAC members considered the implementation of ADS into their access workflows, as well as perceptions of the relative advantage of ADS over the status quo. Future research is needed to build the evidence base around the comparative effectiveness and decisional outcomes of institutions that do/not use ADS into their workflows. (shrink)

Background Ethical conflicts generate difficulties in daily clinical activity. Which methods of ethical advice are most frequently used to resolve them among Spanish doctors has not been studied. The objective of this study is to describe what methods hospital internal medicine physicians in Spain use to resolve their ethical doubts and which they consider most useful. Design A cross-sectional observational study was conducted through a voluntary and anonymous survey and distributed through an ad hoc platform of the Spanish Society of (...) Internal Medicine. Measures We measured methods by which to resolve doubts, types of tools sought, frequency of consulting the Clinical Ethics Committees, and satisfaction with resolution of ethical issues. Results Of 261 internists surveyed, 86 per cent resolve their ethical doubts with assistance, the most frequently used method being consultation with colleagues (58.6 per cent), followed by using specific protocols or guides (11.8 per cent) and consultation with experts in bioethics (9.6 per cent). The most preferred tools are the creation of protocols (30.3 per cent) and the establishment of a consultant/expert in bioethics (27.8 per cent). Conclusions Internists in Spain usually seek assistance to resolve their ethical doubts. Consulting colleagues is the most frequently adopted method. The majority regard tools to resolve ethical conflicts as necessary, seeking above all protocols and consultants/experts in bioethics. (shrink)

Against the background of the increasing importance of digitization in health care, the paper examines how medical practitioners who are involved in the development of digital health technologies legitimate and criticize the implementation and use of digital health technologies. Adopting an institutional logics perspective, the study is based on qualitative interviews with persons working at the interface of medicine and digital technologies development in Switzerland. The findings indicate that the developers believe that digital health technologies could harmonize current conflicts between (...) an increasing economization of the health care system and professional–ethical demands. At the same time, however, they show that digital technologies can undermine the demand for medical autonomy, a central element of the medical ethos. (shrink)

This special issue of the Journal of Agricultural and Environmental Ethics presents so-called ethical tools that are developed to support systematic public deliberations about the ethical aspects of agricultural biotechnologies. This paper firstly clarifies the intended connotations of the term “ethical tools” and argues that such tools can support liberal democracies to cope with the issues that are raised by the application of genetic modification and other modern biotechnologies in agriculture and food production. The paper secondly characterizes (...) the societal discussion on agricultural biotechnology and defends the thesis that normative perspectives fuel this discussion, so one cannot come to grips with this discussion if one neglects these perspectives. The paper thirdly agrues that no such thing exists as “one” societal debate in which these issues should be discussed. There are several interwined debates, and different actors participate in different discourses. Some practical instruments are necessary in order to include the right issues in these debates. These instruments will be coined as “ethical tools,” since they are practical instruments that can be used (tools) in order to support debates and deliberative structures for a systematic engagement with ethical issues (hence, ethical tools). Finally, the paper clarifies the ethics of these ethical tools and presents the tools as discussed in the remainder of this special issue: 1) tools to include ethical issues in public consulation and involvement; 2) tools to support systematic reflection upon ethical issues in decision-making; and 3) tools to support explicit communication about values in the food chain. (shrink)

Standpoint epistemology, the view that social identity is relevant to knowledge-acquisition, has been consigned to the margins of mainstream philosophy. In part, this is because the principles of standpoint epistemology are taken to be in opposition to those which guide traditional epistemology. One goal of this paper is to tease out the characterization of traditional epistemology that is at odds with standpoint epistemology. The characterization of traditional epistemology that I put forth is one which endorses the thesis of intellectualism, the (...) view that knowledge does not depend on non-epistemic features. I then suggest that two further components – the atomistic view of knowers and aperspectivalism – can be usefully interpreted as supporting features of intellectualism. A further goal of this paper is to show that we ought to resist this characterization of traditional epistemology. I use pragmatic encroachment as a dialectical tool to motivate the denial of intellectualism, and consequently, the denial of both supporting components. I then attempt to show how it is possible to have a view, similar to pragmatic encroachment, that takes social identity, rather than stakes, to be the feature that makes a difference to what a person is in a position to know. (shrink)

Evaluating clinical ethics support services has been hailed as important research task. At the same time, there is considerable debate about how to evaluate CESS appropriately. The criticism, which has been aired, refers to normative as well as empirical aspects of evaluating CESS. In this paper, we argue that a first necessary step for progress is to better understand the intervention in CESS. Tools of complex intervention research methodology may provide relevant means in this respect. In a first (...) step, we introduce principles of “complex intervention research” and show how CESS fulfil the criteria of “complex interventions”. In a second step, we develop a generic “conceptual framework” for “ethics consultation on request” as standard for many forms of ethics consultation in clinical ethics practice. We apply this conceptual framework to the model of “bioethics mediation” to make explicit the specific structural and procedural elements of this form of ethics consultation on request. In a final step we conduct a comparative analysis of two different types of CESS, which have been subject to evaluation research: “proactive ethics consultation” and “moral case deliberation” and discuss implications for evaluating both types of CESS. To make explicit different premises of implemented CESS interventions by means of conceptual frameworks can inform the search for sound empirical evaluation of CESS. In addition, such work provides a starting point for further reflection about what it means to offer “good” CESS. (shrink)

Several studies show that healthcare professionals need to communicate inter-professionally in order to manage ethical difficulties. A model of clinical ethics support inspired by Habermas’ theory of discourse ethics has been developed by our research group. In this version of CES sessions healthcare professionals meet inter-professionally to communicate and reflect on ethical difficulties in a cooperative manner with the aim of reaching communicative agreement or reflective consensus. In order to understand the course of action during CES, the (...) aim of this study was to describe the communication of value conflicts during a series of inter-professional CES sessions. Ten audio- and video-recorded CES sessions were conducted over eight months and were analyzed by using the video analysis tool Transana and qualitative content analysis. The results showed that during the CES sessions the professionals as a group moved through the following five phases: a value conflict expressed as feelings of frustration, sharing disempowerment and helplessness, the revelation of the value conflict, enhancing realistic expectations, seeing opportunities to change the situation instead of obstacles. In the course of CES, the professionals moved from an individual interpretation of the situation to a common, new understanding and then to a change in approach. An open and permissive communication climate meant that the professionals dared to expose themselves, share their feelings, face their own emotions, and eventually arrive at a mutual shared reality. The value conflict was not only revealed but also resolved. (shrink)

The purpose of this article is to provide a short overview of the condition of clinical ethics committees (CECs) and other forms of the so-called "ethics support" infrastructure. This includes but is not limited to CECs because some countries also have ethics consultation services that function independently from the CECs. It seems that properly structured CECs and other types of ethics support have a potential to act as facilitators of ethically sensitive healthcare decision-making. This (...) goal can be achieved if the ethics support infrastructure becomes an integral part of the healthcare institution where the majority of ethical dilemmas and the need for ethical debate arise. At the same time, CECs can become a useful tool for implementing bioethical standards developed at both national and international levels, including those established by the Council of Europe instruments. This is the main reason why the issue of developing clinical ethics support services might be very important for the Steering Committee on Bioethics (CDBI) of the Council of Europe. More specifically, the question is what special role ethics support services can play in the context of the follow up to the Council of Europe Symposium in the decision-making process regarding medical treatment in end-of-life situations (Strasbourg, 30 November-1 December). Very often, cases to be considered by the CECs and ethics consultants deal with the difficult end-of-life treatment choices. (shrink)

Ethics support staff help others to deal with moral challenges. However, they themselves can also experience moral challenges such as issues regarding (breaching) confidentiality when practicing ethics support. Currently there is no insight in these confidentiality issues and also no professional guidance for dealing with them. To gain insight into moral challenges related to Moral Case Deliberation (MCD), we studied a) beliefs and experiences of MCD facilitators regarding breaching confidentiality, b) considerations for (not) breaching confidentiality, and (...) c) needs for an ethics support tool. Data collection consisted of qualitative research methods: six semi-structured interviews; analyses of a) two recorded MCD sessions, and b) a focus group with MCD facilitators. Findings: MCD facilitators mention different conceptions and interpretations of confidentiality and various moral challenges. Questions concerning confidentiality ultimately cause reflections on roles and responsibilities of facilitators. Needs for ethics support vary from seeking advice to procedural and sometimes normative guidance for MCD facilitators. Education for MCD facilitators should focus on developing a concrete tool that stimulates awareness and reflection(skills). (shrink)

Background Increasing social pluralism adds to the already existing variety of heterogeneous moral perspectives on good care, health, and quality of life. Pluralism in social identities is also connected to health and care disparities for minoritized patient (i.e. care receiver) populations, and to specific diversity-related moral challenges of healthcare professionals and organizations that aim to deliver diversity-responsive care in an inclusive work environment. Clinical ethics support (CES) services and instruments may help with adequately responding to these diversity-related moral (...) challenges. However, although various CES instruments exist to support healthcare professionals with dealing well with morally challenging situations in healthcare, current tools do not address challenges specifically related to moral pluralism and intersectional aspects of diversity and social justice issues. This article describes the content and developmental process of a novel CES instrument called the Diversity Compass. This instrument was designed with and for healthcare professionals to dialogically address and reflect on moral challenges related to intersectional aspects of diversity and social justice issues that they experience in daily practice. Methods We used a participatory development design to develop the Diversity Compass at a large long-term care organization in a major city in the Netherlands. Over a period of thirteen months, we conducted seven focus groups with healthcare professionals and peer-experts, carried out five expert interviews, and facilitated four meetings with a community of practice consisting of various healthcare professionals who developed and tested preliminary versions of the instrument throughout three cycles of iterative co-creation. Results The Diversity Compass is a practical, dialogical CES instrument that is designed as a small booklet and includes an eight-step deliberation method, as well as a guideline with seven recommendations to support professionals with engaging in dialogue when they are confronted with diversity-related moral challenges. The seven recommendations are key components in working toward creating an inclusive and safe space for dialogue to occur. Conclusions The Diversity Compass seeks to support healthcare professionals and organizations in their efforts to facilitate awareness, moral learning and joint reflection on moral challenges related to diversity and social justice issues. It is the first dialogical CES instrument that specifically acknowledges the role of social location in shaping moral perspectives or experiences with systemic injustices. However, to make healthcare more just, an instrument like the Diversity Compass is not enough on its own. In addition to the Diversity Compass, a systemic and structural approach to social justice issues in healthcare organizations is needed in order to foster a more inclusive, safe and diversity-responsive care and work environment in health care organizations. (shrink)

Background Despite the bourgeoning of digital tools for bioethics research, education, and engagement, little research has empirically investigated the impact of interactive visualizations as a way to translate ethical frameworks and guidelines. To date, most frameworks take the format of text-only documents that outline and offer ethical guidance on specific contexts. This study’s goal was to determine whether an interactive-visual format supports frameworks in transferring ethical knowledge by improving learning, deliberation, and user experience.Methods An experimental comparative study was conducted with (...) a pre-, mid-, and post-test design using the online survey platform Qualtrics. Participants were university based early-stage health researchers who were randomly assigned to either the control condition (text-only document) or the experimental condition (interactive-visual). The primary outcome variables were learning, (measured using a questionnaire), deliberation (using cases studies) and user experience (measured using the SED/UD Scale). Analysis was conducted using descriptive statistics and mixed-effects linear regression.Results Of the 80 participants, 44 (55%) used the text-only document and 36 (45%) used the interactive-visual. Results of the knowledge-test scores showed a statistically significant difference between participants’ post-test scores, indicating that the interactive-visual format better supported understanding, acquisition, and application of the framework’s knowledge. Findings from the case studies showed both formats supported ethical deliberation. Results further indicated the interactive-visual provided an overall better episodic and remembered user experience compared with the text-only document.Conclusions Our findings show that ethical frameworks formatted with interactive and visual qualities provide a more pleasing user experience and are effective formats for ethics learning and deliberation. These findings have implications for practitioners developing and deploying ethical frameworks and guidelines (e.g., in educational or employee-onboarding settings), in that the knowledge generated can lead to more effective dissemination practices of normative guidelines and health data ethics concepts. (shrink)

When engaging in community-based research, it is important to consider ethical research practices throughout the project. While current research practices require many investigators to obtain approval from an ethics review board before starting a project, more is required to ensure that ethical principles are applied once the investigations begin and after the investigations are complete. In response to this concern, as expressed by workers at a feminist non-profit during a community placement, we developed a tool to foster both (...) greater ethical and feminist research practice in community-based research. Using feminist theories, methodologies, and concepts such as epistemic justice, epistemic trust, and coauthorship, a tool was developed to support researchers and other collaborators in building relationships of reciprocity. This tool, called the Research Responsibility Agreement (RRA) invites all members of a research project to explicitly reflect on their role in the research, their relationships with other collaborators, their responsibility to contributing meaningfully in the project, and their plans to remain accountable to one another. In doing so, the RRA adds to existing tools that support ethical research by sharing explicit reflections from all collaborators on how to prevent harm and by asking them to reflect on ethical practices beyond the initial stages of the project. The RRA also encourages greater engagement from researchers and collaborators toward building meaningful relationships with each other, and with participants, to work together in advancing social change. As a practical tool that promotes reflection, that builds relationships, and that holds all parties accountable to ethical and feminist research practices, the RRA has the potential to generate impactful change in community-based research projects and beyond. While the RRA is tailored to community-based research, it can be applied widely to any research project and has the potential to revolutionize how research relationships are built across disciplines. (shrink)

Although moral case deliberation (MCD) is evaluated positively as a form of clinical ethics support (CES), it has limitations. To address these limitations our research objective was to develop a thematic CES tool. In order to assess the philosophical characteristics of a CES tool based on MCDs, we drew on hermeneutic ethics and pragmatism. We distinguished four core characteristics of a CES tool: (a) focusing on an actual situation that is experienced as morally challenging (...) by the user; (b) stimulating moral inquiry into the moral concepts, questions and routines in the lived experience of the CES tool user; (c) stimulating moral learning by exploring other perspectives; and (d) incorporating contextual details. We provide an example of a CES tool developed for moral dilemmas over client autonomy. Our article ends with some reflections on the normativity of the CES tool, other application areas and the importance of evaluation studies of CES tools. (shrink)

Global health research partnerships have many benefits, including the development of research capacity and improving the production and use of evidence to improve global health equity. These partnerships also include many challenges, with power and resource differences often leading to inequitable and unethical partnership dynamics. Responding to these challenges and to important gaps in partnership scholarship, the Canadian Coalition for Global Health Research conducted a three-year, multi-regional consultation to capture the research partnership experiences of stakeholders in South Asia, Latin America, (...) and sub-Saharan Africa. The consultation participants described persistent inequities in the conduct of global health research partnerships and called for a mechanism through which to improve accountability for ethical conduct within partnerships. They also called for a commitment by the global health research community to research partnership ethics. The Partnership Assessment Toolkit is a practical tool that enables partners to openly discuss the ethics of their partnership and to put in place structures that create ethical accountability. Clear mechanisms such as the PAT are essential to guide ethical conduct to ensure that global health research partnerships are beneficial to all collaborators, that they reflect the values of the global health endeavor more broadly, and that they ultimately lead to improvements in health outcomes and health equity. (shrink)

In this paper, the author shows how research ethics committees must deal with illegality in the research protocol. He defines their legal duty by reference to the 2001 Clinical Trials Directive, and especially in the key areas of insurance, indemnity and no-fault compensation. The author is critical of the current GAfREC and recent guidelines issued by the Royal College of Physicians. He concludes that new rules are needed to replace the 2001 edition of GAfREC.

In this chapter we reflect on the relevance of peer review for assessing the quality of clinical ethics consultation. We contend that peer review in the narrative form as presented in this book provides an alternative to the formal clinical ethics consultation review procedures typically found in the clinical ethics literature. We elaborate on peer review as a reflection on clinical ethics consultation practice, the elements which a story should contain in order to provide a basis (...) for peer review, and the differences between the assessments of the peer reviewers. We argue that a narrative approach to assessing the quality of ethics consultation can be further developed by allowing all stakeholders who are involved in the clinical ethics practice to actively take part in the evaluation process, following a “responsive evaluation” approach. An example of this is creating a Community of Practice, the aim of which is to foster a joint learning process of all parties involved. At the end of this chapter, we draw conclusions on peer review as a dialogical tool for evaluating quality of clinical ethics consultation. (shrink)

This article reviews suggestions for how ethical tools are to be evaluated and argues that the concept of ethical soundness as presented by Kaiser et al. is unhelpful. Instead, it suggests that the quality of an ethical tool is determined by how well it achieves its assigned purpose. Those are different for different tools, and the article suggests a categorization of such tools into three groups. For all ethical tools, it identifies comprehensiveness and user-friendliness as crucial. For tools that (...) have reaching a decision in a democratic context as a main purpose, it identifies transparency, guiding users toward a decision and justification of the decision-supporting mechanism. For tools that aim to engage the public, it identifies procedural fairness as essential. It also notes that the scope of use for ethical tools is limited to the same moral community, and that this feature is frequently overlooked. (shrink)

This article is a response to the letter from the Department of Health that was published in the previous edition of the Research Ethics Review upon the matter of the legal duty of the research ethics committees. It also deals briefly with the article published in the current edition of Research Ethics Review by Colin Parker on what appears to be the same topic.

Standpoint epistemology is committed to the view that some epistemic advantage can be drawn from the position of powerlessness. Call this theepistemic privilege thesis. This thesis stands in need of explication and support. In providing that explication and support, I first distinguish between two readings of the thesis: the thesis that marginalized social locations confer some epistemic advantages (the epistemic advantage thesis) and the thesis that marginalized standpoints generate better, more accurate knowledge (the standpoint thesis). I then develop (...) the former by appealing to the notion of epistemic peers available in the disagreement literature. I next turn to the latter thesis, arguing that consciousness-raising plays an analogous role in the achievement of a standpoint as training does in the achievement of expertise. The upshot of this analysis is that it clarifies that while marginalization is necessary (though not sufficient) for epistemic advantage, it is neither necessary nor sufficient for epistemic privilege. (shrink)

The Patients Changing Things Together (PATCHATT) programme supports individuals with a life-limiting illness to lead a change that matters to them. Individuals join a facilitated online peer support group to identify an issue they feel strongly about, plan for change and take action to bring that change about. The programme is developed and guided by a Programme Advisory Group with clinical and lay membership. This article charts the trialling of the patients changing thing together ethics pack, designed to (...) support all members of the Programme Advisory Group in taking an equal role in ethical decision-making as they guide the programme's ongoing development. As a trial of its efficacy, the pack was used by the author to consider an ethical dilemma at the heart of the development of the Patients Changing Things Together programme, that is, is it ethical to offer a community palliative care programme which has the potential to bring participants harm as well as good? The author reports a strong ethical argument for offering this programme, while concluding the need for the Programme Advisory Group to make the final decision, using the Patients Changing Things Together ethics pack to consider the results of the evaluation of the programme's pilot. The article concludes that this pack provides an effective tool to guide ethical novices through the ethical complexities of developing a community-based palliative care intervention programme. It raises the issue that such inclusivity is achieved through a normative decision-making process which denies the fluidity and creativity which may inform the best ethical decision-making practice. (shrink)

In this paper the author argues that the Academy of Medical Sciences's ‘Review of the regulation and governance of medical research’ has produced a set of muddled recommendations that could increase complexity and uncertainty in research governance rather than reduce it. Issues discussed in the paper include the additional legal burden placed upon the newly proposed Health Research Agency by the plan for a National Research Governance Service and its system of centralized permissions, the consequences that this may have for (...) the research ethics committees in the discharge of their legal duty, and the unanswered questions surrounding the TGN1412 incident. (shrink)

This article is a response to the public consultation on the draft Code of Practice issued by the Human Tissue Authority on the import and export of human bodies, body parts and tissue. The question is whether the Draft Code and the Human Tissue Act go far enough to prevent the unethical acquisition and movement of human tissue. I conclude that the answer to this question is ‘no’ and go on to demonstrate how the identified deficiencies can be remedied.

In this article, the author contends that the current indemnity provided to REC members is unfair and is so badly drafted that it cannot be described as an indemnity at all. He contends that the Appointing Authorities should give guidance to clarify the scope of the indemnity or replace it. The author discusses potential legal claims by REC members against their Appointing Authority if this is not provided. The legal liability of REC members for negligence and other claims is also (...) discussed. The author provides a solution in a simpler form of indemnity framed by reference to actual claims that can be made against a REC member. (shrink)

COVID-19 is compromising all aspects of society, with devastating impacts on health, political, social, economic and educational spheres. A premium is being placed on scientific research as the source of possible solutions, with a situational imperative to carry out investigations at an accelerated rate. There is a major challenge not to neglect ethical standards, in a context where doing so may mean the difference between life and death. In this paper we offer a rubric for considering the ethical challenges in (...) COVID-19 related research, in the form of an ethics toolkit for global research developed at the University of Edinburgh in collaboration with more than 200 global researchers from around the world. This toolkit provides a framework to support confrontation of ethical conflicts through the integrated and iterative analysis of Place, People, Principles and Precedents, throughout the research journey. Two case analyses are offered to exemplify the utility of the toolkit as a flexible and dynamic tool to promote ethical research in the context of COVID-19. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Learning in Dramatic and Virtual Worlds:What Do Students Say About Complementarity and Future Directions?John O'Toole (bio) and Julie Dunn (bio)A top financial backer has arrived to determine which team of computer interaction designers has developed the most exciting and innovative proposal for the Everest component of the Virtually Impossible Computer Company's Conquerors of the World Series. Tension is high as the presentations begin, but this tension soon turns to (...) outright conflict as some proposals suggest George Mallory as the conqueror, and the financial backer will have none of him. The backer, it seems, has her own agenda and is determined to allow for only one view of history—the one that records Sir Edmund Hillary as a New Zealand hero and the only real conqueror of the tallest mountain on earth. The designers become more and more agitated until suddenly someone bangs their hand on the table and calls out, "Hang on... just because you've got the money doesn't mean... kids need to learn about both these men... they need to learn about history." With that the drama is cut by the teacher. The deep understandings about "history's purchased page" that can be generated when drama and computers are brought together for learning have been made explicit... but could these same outcomes have been achieved using just one of these approaches?IntroductionThe research explored within this article was generated as part of the Media Station, a project funded by the Australasian Collaborative Research Centre for Interaction Design (ACID), with an overall mission to investigate the potential of massively multiplayer online games for learning. This particular subproject, History's Purchased Page, saw researchers from interaction design [End Page 89] and drama education come together with a group of young learners to investigate their perceptions of the complementarity of computers and live classroom drama and to brainstorm future possibilities for applying computer-based technologies to drama-based learning. We sought to discover the following:• What do young learners say about how they experience and value learning in a context involving a combination of drama and computers?• What ideas do these young learners have about how future technologies might enrich the complementarity of this combination?As the drama researchers involved in this project, we had been experimenting with this perhaps slightly unusual combination for over a decade by incorporating computers into a number of our drama units within our primary textbook Pretending to Learn.1 Our goal in these experimentations had always been to enrich the classroom drama experience by taking advantage of the information capacity of the Internet and other computer-based resources, including databases. For example, we had used The First Fleet Database2 to support a drama unit where the learners take on the role of convicts arriving in Australia in 1788. We discovered that this material, combined with other documentation and historical materials available via the Internet, greatly enhanced not only the historical accuracy of the work but also the level of engagement experienced by the learners when in role. Therefore, we were very keen to extend this work by exploring new possibilities and were especially keen to develop a better understanding of what the learners made of this interactivity.In recent years the partnering of these two quite different approaches to learning has developed quite a research following, and a number of drama teachers and researchers have become interested in the complementarity of these ways of learning.3 At the same time, researchers and designers from the field of computer-assisted learning have also noted these connections. This goes back to the work of Brenda Laurel, who first drew attention to the intriguing links between computers and theatre in her now famous text Computers as Theatre.4 With the rapid growth of interactive learning tools such as 3-D immersive worlds, blogs, and online voice and text chat spaces, the opportunities for exploration of these connections have also grown, with each of these offering exciting new possibilities when used in conjunction with the highly interactive and engaging strategies of process drama.Process drama is a way of group learning, through whole-class improvised drama, with students (and sometimes the... (shrink)

Localism is a social movement often associated with “buy local” food initiatives or the prevention of big-box retail expansion. At its core, however, localism is also about fostering local independence by encouraging businesses to opt for local alternatives when making purchasing decisions. In this article, we develop and test hypotheses that organizations with stronger community-oriented identities are more likely to source locally and that this relationship is moderated by the importance of the focal firm’s purchasing decisions. Results support the (...) strong influence of identity but the conditional effect is unconfirmed. (shrink)

Energy and Social Change results from the Twenty Year Forecast Project, directed by the author and conducted trhough the University of Southern California Center for Futures Research. Unlike many more gloomy predictions, this study takes a step back from pessimism. It offers instead a realistic perspective tempered with a modicum of optimism.The report's special contribution to the energy debate lies in its call for a redirection of attention to options that are realizable within the framework--and the limits--of the existing system. (...) Advocating higher energy prices and more incentives for increased competition in the domestic energy market, the author supports a resurgence of the free enterprise system. The price of energy will and should increase in order to control waste, although the rise in costs will be mitigated by the gradual pace. In the long term, however, we should strive for a "quality economy" characterized in part by its reduced inefficiency and more meaningful jobs. Three of the ways in which this might be accomplished are shifting to an electrically based economy, developing alternative forms of energy, and switching to technologies more appropriate to the future environment.Sure to generate discussion, this analysis will prove useful in considerations of energy policy and the social impact of technological change. (shrink)

Although clinical ethics support services are becoming increasingly prevalent in Europe and North America, they remain an uncommon feature of the Irish healthcare system and Irish health professionals lack formal support when faced with ethically challenging cases. We have developed a variant on existing clinical ethics decision-making tools which is designed to build capacity and confidence amongst Irish practitioners and enable them to confront challenging situations in the absence of any dedicated support structure. The (...) class='Hi'>tool provided below follows a transparent stepwise procedure which avoids an overcomplicated analysis while remaining sensitive to the complexity of the issues addressed. The novelty of the tool lies in the explicit association it makes between each step in the process and one or more responsibilities based on established norms of ethical decision-making in the public domain. (shrink)

Multidrug resistant organisms are a public health threat that have reduced the effectiveness of many available antibiotics. Antimicrobial stewardship programs have been tasked with reducing antibiotic use and therefore the emergence of MDROs. While fecal microbiota transplant has been proposed as therapy to reduce patient colonization of MDROs, this will require additional evidence to support an expansion of the current clinical indication for FMT. This article discusses the evidence and ethics of the expanded utilization of FMT by ASPs (...) for reasons other than severe recurrent or refractory Clostridioides difficile infection. (shrink)

The American Society for Bioethics and Humanities promulgated standards for clinical ethics consultants and is currently developing a national Quality Attestation in Clinical Ethics Consultation to assist facilities in ensuring that those performing clinical ethics consultations meet minimum standards. As the field moves towards such professionalization, there is a need to provide access to qualified clinical ethicists at a broad range of medical facilities. Currently, however, there are insufficient numbers of trained clinical ethicists to staff all healthcare (...) facilities, and many facilities lack the necessary resources to hire staff clinical ethicists. In this review, we describe several models for providing expert clinical ethics support to remote facilities that lack access to qualified clinical ethicists. Based on this analysis, we recommend telemedicine as the optimal model providing expert support to local ethics committee members tasked with providing clinical ethics consultation services. (shrink)

Within a supportive learning environment, dialogue can allow for the identification and testing of assumptions and tacit beliefs. It can also illustrate the inadequacies in superficial thinking about ethical problems. Internal dialogue allows us to examine our beliefs, and to prepare and evaluate arguments. Each of these elements is important in the study of business ethics. This paper outlines one teaching technique based on Socratic dialogue, and shows how it can be applied to develop business students' thinking about (...) class='Hi'>ethics. After justifying the suitability of this technique, and detailing its key elements, the paper offers for consideration an illustration of how the technique may be applied in a classroom setting, using structured role play. The paper concludes with a “teaching agenda”, offering suggestions for how this technique can be applied to teaching business ethics in an undergraduate, or postgraduate module, where it can examine language, structures and practices. (shrink)

In clinical research scientific, legal as well as ethical aspects are important. It is well known that clinical investigators at university hospitals have to undertake their PhD-studies alongside their daily work and reconciling work and study can be challenging. The aim of this project was to create a web based course in clinical research bioethics (5 credits) and to examine whether the method is suitable for teaching bioethics. The course comprised of six modules: an initial examination (to assess knowledge in (...) bioethics), information on research legislation, obtaining permissions from authorities, writing an essay on research ethics, preparing one’s own study protocol, and a final exam. All assignments were designed with an idea of supporting students to reflect on their learning with their own research. (shrink)

The Ethical Matrix was developed to help decision-makers explore the ethical issues raised by agri-food biotechnologies. Over the decade since its inception the Ethical Matrix has been used by a number of organizations and the philosophical basis of the framework has been discussed and analyzed extensively. The role of tools such as the Ethical Matrix in public policy decision-making has received increasing attention. In order to further develop the methodological aspects of the Ethical Matrix method, work was carried out to (...) study the potential role of the Ethical Matrix as a decision support framework. When considering which frameworks to apply when analyzing the ethical dimensions of the application of agri-food biotechnologies, it is important to clarify the substantive nature of any prospective framework. In order to further investigate this issue, reflections on the neologism “ethical soundness” of an ethical framework are presented here. This concept is introduced in order to provide more structured evaluations of a range of ethical tools, including ethical frameworks such as the Ethical Matrix. As well as examining the philosophical dimensions of the method, theoretical analysis and literature studies were combined with stakeholder engagement exercises and consultations in order to review the Ethical Matrix from a user perspective. This work resulted in the development of an Ethical Matrix Manual, which is intended to act as a guide for potential user groups. (shrink)

The co-occurrence of stress-induced posttraumatic stress disorder and obesity is common, particularly among military personnel but the link between these conditions is unclear. Individuals with comorbid PTSD and obesity manifest other physical and psychological problems, which significantly diminish their quality of life. Current understanding of the pathways connecting stress to PTSD and obesity is focused largely on behavioral mediators alone with little consideration of the biological regulatory mechanisms that underlie their co-occurrence. In this work, we leverage prior knowledge to systematically (...) highlight such bio-behavioral mechanisms and inform on the design of confirmatory pilot studies. We use natural language processing to extract documented regulatory interactions involved in the metabolic response to stress and its impact on obesity and PTSD from over 8 million peer-reviewed papers. The resulting network describes the propagation of stress to PTSD and obesity through 34 metabolic mediators using 302 documented regulatory interactions supported by over 10,000 citations. Stress jointly affected both conditions through 21 distinct pathways involving only two intermediate metabolic mediators out of a total of 76 available paths through this network. Moreover, oxytocin, Neuropeptide-Y, and cortisol supported an almost direct propagation of stress to PTSD and obesity with different net effects. Although stress upregulated both NPY and cortisol, the downstream effects of both markers are reported to relieve PTSD severity but exacerbate obesity. The stress-mediated release of oxytocin, however, was found to concurrently downregulate the severity of both conditions. These findings highlight how a network-informed approach that leverages prior knowledge might be used effectively in identifying key mediators like OXT though experimental verification of signal transmission dynamics through each path will be needed to determine the actual likelihood and extent of each marker’s participation. (shrink)