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Background: Artificial intelligence (AI) is increasingly used for prevention, diagnosis, monitoring, and treatment of cardiovascular diseases. Despite the potential for AI to improve care, ethical concerns and mistrust in AI-enabled healthcare exist among the public and medical community. Given the rapid and transformative recent growth of AI in cardiovascular care, to inform practice guidelines and regulatory policies that facilitate ethical and trustworthy use of AI in medicine, we conducted a literature review to identify key ethical and trust barriers and facilitators from patients' and healthcare providers' perspectives when using AI in cardiovascular care. Methods: In this rapid literature review, we searched six bibliographic databases to identify publications discussing transparency, trust, or ethical concerns (outcomes of interest) associated with AI-based medical devices (interventions of interest) in the context of cardiovascular care from patients', caregivers', or healthcare providers' perspectives. The search was completed on May 24, 2022 and was not limited by date or study design. Results: After reviewing 7,925 papers from six databases and 3,603 papers identified through citation chasing, 145 articles were included. Key ethical concerns included privacy, security, or confidentiality issues (n = 59, 40.7%); risk of healthcare inequity or disparity (n = 36, 24.8%); risk of patient harm (n = 24, 16.6%); accountability and responsibility concerns (n = 19, 13.1%); problematic informed consent and potential loss of patient autonomy (n = 17, 11.7%); and issues related to data ownership (n = 11, 7.6%). Major trust barriers included data privacy and security concerns, potential risk of patient harm, perceived lack of transparency about AI-enabled medical devices, concerns about AI replacing human aspects of care, concerns about prioritizing profits over patients' interests, and lack of robust evidence related to the accuracy and limitations of AI-based medical devices. Ethical and trust facilitators included ensuring data privacy and data validation, conducting clinical trials in diverse cohorts, providing appropriate training and resources to patients and healthcare providers and improving their engagement in different phases of AI implementation, and establishing further regulatory oversights. Conclusion: This review revealed key ethical concerns and barriers and facilitators of trust in AI-enabled medical devices from patients' and healthcare providers' perspectives. Successful integration of AI into cardiovascular care necessitates implementation of mitigation strategies. These strategies should focus on enhanced regulatory oversight on the use of patient data and promoting transparency around the use of AI in patient care. [ABSTRACT FROM AUTHOR]

Background: International electives are often considered a valuable learning opportunity for medical students. Yet, as travelling to lower and middle income countries (LMICs) becomes more common, ethical considerations of such practices emerge. We conducted a scoping review to assess the extent to which five ethical themes were addressed in existing literature about electives, with the aim of investigating the ethical impacts of medical student electives on local resources, patients and clinicians in LMICs. Methods: We systematically searched PubMed, Global Health and Embase databases using the search terms "(ethics) AND (medical electives)". Thematic content analysis was undertaken using a combination of deductive and inductive themes. The deductive themes included: exceeding clinical competence, use of limited local resources, respect for patients and local culture, collaboration with local community/colleagues, and one-sided benefits in partnership. In addition, we also allowed for emerging themes within the data, and conducted a narrative synthesis of the results. Results: A total of 37 papers discussed ethical issues relating to medical student international electives to LMICs. More publications were written from the medical student perspective (n = 14), than by the host-institution (n = 5), with nearly half written from third-party perspectives (n = 18). Negative impacts on local host students and impact upon patient care were identified as additional ethical considerations. Conclusions: Our review demonstrated that while there is a degree of awareness in the existing literature of the potential negative impacts of medical electives to local LMIC students' access to medical education and patient care, continued work is needed to ensure equitable partnerships. We recommend that these ethical themes should be further explored in pre-departure elective teaching courses and post-elective debriefs to increase medical students' awareness of the impact of their presence on host communities. [ABSTRACT FROM AUTHOR]

The label severe and enduring anorexia nervosa (SE-AN) is widely used in the literature on longstanding anorexia nervosa (AN). However, the process of constructing the criteria and the use of the label SE-AN has ethical implications that have not been taken into account. Through combining existing literature and lived experience perspective, this paper addresses to what extent the current criteria do and do not reflect the lived experience. Arguments are presented on why the process of constructing the criteria for SE-AN and the application of the label can be both identified as, and give rise to, epistemic injustice. Epistemic injustice is an injustice that is done to a person as an individual with the capacity of acquiring and sharing knowledge. This type of injustice can occur at any stage of an interaction between people in which knowledge is shared with one another. The paper concludes by giving suggestions on how to pursue epistemic justice in the process of defining longstanding AN. Plain English summary: Some patients with anorexia nervosa (AN) develop a longstanding eating disorder. Over the years different labels, such as 'chronic AN' or 'treatment resistant AN', have been used to describe longstanding AN. Currently, the label that is used most often in scientific literature is 'severe and enduring AN' (SE-AN) and criteria for what entails SE-AN have been proposed. This paper looks at the possible ethical issues that have arisen in the process of constructing the criteria and possible ethical problems that may result from using the label SE-AN. The paper focuses on injustice that may arise when people with specific experiences, such as lived experience of longstanding AN, are not acknowledged as people with important knowledge to share. The paper concludes by giving suggestions on how to overcome this type of injustice. [ABSTRACT FROM AUTHOR]

Background: The aim of the research is to shed light on the experiences of a group of nursing students enrolled in a yoga elective course who practiced yoga regularly for 14 weeks, regarding yoga and the phenomenon of doing yoga, with a qualitative approach. Methods: This qualitative study was conducted at a public university in Izmir, Turkey. The study sample consisted of 61 students enrolled in the 1st-year yoga course at the Department of Nursing, Faculty of Health Sciences. Except for two students, 59 of them participated in the study. Participants attended a face-to-face yoga course once a week for 1.5 h over a 14-week period. Each session comprised 30 min of theoretical instruction and 60 min of practice. In data collection, an interview form containing five questions was used to understand nursing students' experiences and thoughts about practicing yoga. In addition, A4 sized papers in different colors were presented to the participants. The participants were asked to draw and/or cut a shape by choosing the paper in the color that most evokes yoga. Then they were asked to explain why they chose this color and why they drew this shape. Participants were given one hour. After the data were collected, the pictures drawn by the participants and their descriptions of their drawings were transferred to the computer and included in the analysis. Qualitative data were hand-coded by the researchers. Within in-vivo coding, code names were formed from the participants' expressions. The findings analyzed by content analysis were interpreted with the literature under the themes by presenting quotations. Results: It was determined that the participants used nature figures (sun, cloud, tree, sky, flower) (f = 75), people doing yoga (f = 12), and sound, light and other figures (bird sound, wave sound, candle, light bulb, traffic light, heart, eye, left key, peace, swing, India, circle, etc.) (f = 29) in the shapes they drew and cut out on A4 sized papers in different colors to describe their experiences and thoughts about practicing yoga. The participants mostly chose blue-green-yellow colors (n = 41). With qualitative question analysis, a list of codes was created from the answers given by the students to the questions for the phenomenon of "doing yoga" (number of codes = 98). After the analysis of the data, four categories were reached. The category names and frequency numbers explaining the phenomenon of practicing yoga were distributed as "symbol of health and serenity (f = 345)", "the way to place goodness in your heart (f = 110)", "the most effective way to meet the self (f = 93)" and "no guarantee of relaxation (f = 71)", respectively. Conclusions: The results indicate that yoga is perceived by nursing students as a multifaceted practice that evokes a range of emotional and physical responses. Most participants associate yoga with symbols of health, serenity, and self-awareness, often using natural elements and blue-green-yellow the colors to represent these feelings. However, there is also recognition that yoga may not guarantee relaxation for everyone, as some students reported difficulties in meditation, physical discomfort, and challenges in focusing. The study highlights the variability in how individuals experience yoga, emphasizing both its positive effects on well-being and the potential challenges in practice. These findings suggest that while yoga is widely valued for its calming and health-promoting benefits, it may not be universally effective in achieving relaxation or mindfulness. [ABSTRACT FROM AUTHOR]

This paper is interested in normative translations of findings in intergenerational epigenetics. Particularly, what role can and should epigenetic knowledge play in our normative thinking about parenthood and relationships such as those between individual parents and broader society or between parents and their children? How should epigeneticists engage in science communication to ensure that knowledge of intergenerational epigenetic effects is useful rather than harmful to parents and children? Much of the existing literature on the ethical aspects of epigenetics points out worrisome tendencies of epigenetic knowledge inspiring policies and discourses that lead to blaming and stigmatization of individual parents and women in particular. While such warnings are important, they are not the only shape ethical discussion of intergenerational epigenetics can take. Firstly, this paper claims that it is also worthwhile and necessary to imagine potential positive effects of epigenetic knowledge on parents and their children. It will be argued that an approach that focuses on empowerment of individual parents and children rather than general responsibility distributions fits will with a nonideal approach to normative theory that takes into account the unequal distributions of social, economic and material resources among parents. The second part of this paper explores whether narrative identity is a useful concept to imagine such a positive framework for the employment of epigenetic knowledge. It argues that integration of epigenetic knowledge in a shared narrative identity may benefit mutual understanding and self-knowledge, and perhaps also have an empowering effect on parents, children and families. After discussing the risks of (1) attaching too much weight to etiology and (2) any epigenetics discourse playing into 'bionormativity', the paper concludes that epigenetic knowledge can and should be used in a framework that goes beyond deterministic etiologies but embraces the complexities and interrelatedness of all factors influencing the health of future generations. [ABSTRACT FROM AUTHOR]

Background: The COVID-19 pandemic forced governments, multilateral public health organisations and research institutions to undertake research quickly to inform their responses to the pandemic. Most COVID-19-related studies required swift approval, creating ethical and practical challenges for regulatory authorities and researchers. In this paper, we examine the landscape of ethics review processes in Africa during public health emergencies (PHEs). Methods: We searched four electronic databases (Web of Science, PUBMED, MEDLINE Complete, and CINAHL) to identify articles describing ethics review processes during public health emergencies and/or pandemics. We selected and reviewed those articles that were focused on Africa. We charted the data from the retrieved articles including the authors and year of publication, title, country and disease(s) reference, broad areas of (ethical) consideration, paper type, and approach. Results: Of an initial 4536 records retrieved, we screened the titles and abstracts of 1491 articles, and identified 72 articles for full review. Nine articles were selected for inclusion. Of these nine articles, five referenced West African countries including Liberia, Guinea and Sierra Leone, and experiences linked to the Ebola virus disease. Two articles focused on South Africa and Kenya, while the other two articles discussed more general experiences and pitfalls of ethics review during PHEs in Africa more broadly. We found no articles published on ethics review processes in Africa before the 2014 Ebola outbreak, and only a few before the COVID-19 outbreak. Although guidelines on protocol review and approval processes for PHEs were more frequently discussed after the 2014 Ebola outbreak, these did not focus on Africa specifically. Conclusions: There is a gap in the literature about ethics review processes and preparedness within Africa during PHEs. This paper underscores the importance of these processes to inform practices that facilitate timely, context-relevant research that adequately recognises and reinforces human dignity within the quest to advance scientific knowledge about diseases. This is important to improve fast responses to PHEs, reduce mortality and morbidity, and enhance the quality of care before, during, and after pandemics. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: In a previous paper in Philos Ethics Humanit Med, the 1937 Swedish novel Sömnlös (Swedish for sleepless) by Vilhelm Moberg was used as background for a thought experiment, in which last century's progresses concerning the safety of sleeping pills were projected into the future. This gave rise to a theoretical discussion about broad medico-philosophical questions such as (among other things) the concept of pharmaceuticalisation. Methods: In this follow-up paper, the theme of insomnia in Sömnlös is complemented by a discussion of the concept of nostalgia. The core of the paper is a theoretical discussion about the benefits and risks of nostalgia, bringing together some aspects of recent psychological research about the construct of nostalgia with the main story line of the novel. Results and Conclusion: Nostalgia is portrayed as being, in some sense at least, ultimately beneficial for the protagonist of Sömnlös. This is congruent with recent psychological research. However, the story also shows that nostalgia may lead to problematic behaviours, at least when viewed from a virtue ethics perspective. Hence, nostalgia is both what leads the protagonist into ethically problematic behaviour and that which (paradoxically) ultimately saves him from his initial lack of courage, justice, temperance and practical wisdom. Moreover, the protagonist does not only "grow" ethically but also existentially. Hence, the novel opens up the possibility that insomnia and nostalgia might be viewed as bearers of important existential information (cf. sociologist of religion Peter L. Berger and his concept of "signals of transcendence"). [ABSTRACT FROM AUTHOR]

Researchers often use terminology to define their participant groups that is rooted in a clinical understanding of the group's shared identity(ies). Such naming often ignores the ways that the individuals who comprise these populations identify themselves. One oft-cited benefit of patient-oriented or community-engaged research is that language is local and relevant to impacted communities. This paper aims to contribute to the literature on how this local and relevant language can best be established. We ask how researchers can identify and implement accurate terminology, even when divergent perspectives exist within the communities involved. We draw from our experience with the Expanding Plasma Donation in Canada study, a community-engaged research study, which explored the views of people impacted by the "men who have sex with men" (MSM) blood donation policies in Canada. We describe the collaborative process through which we came to a consensual naming of this population, the challenges we faced, and a set of guiding principles we used to address them. We did not find an all-encompassing term or acronym that worked for all stages of research. Instead, we offer a set of guiding principles that can aid researchers engaging in a similar process: harm reduction, consent and transparency, collaboration and community involvement, recognition of missing voices, and resisting and/or restructuring oppressive standards. Plain English summary: The words and labels that researchers use to describe the communities they study does not always resonate with the actual members of those communities. Doing research in partnership with members of socially disadvantaged groups can help to ensure that the language used in the research is relevant, accurate, and respectful. Researchers studying issues related to men who have sex with men often struggle with knowing what term to use to describe this group of people. While many people may identify as "gay", "queer", "bisexual", or any other term, there are many men who do not identify with these labels but also have sex with men. Previous research on this topic is usually focused on arguing that a specific term or acronym should be adopted. As part of a larger research program to support more inclusive plasma donation, the current paper describes the process our research team undertook to ethically describe this complex community of diverse men who have sex with men. Rather than choosing one specific label to describe the community members in all situations, we describe a set of guiding principles that can be used to help researchers flexibly navigate language depending on the situation and context. [ABSTRACT FROM AUTHOR]

Background: As digital technology presents the potential to enhance the accessibility and effectiveness of health promotion campaigns, adolescents and young adults are an important target population. Young people are establishing behaviors that will contribute to the quality of their health later in life, and thus understanding their particular perspectives and receptivity to digital technologies for health promotion is crucial. With this review we aimed to synthesize the published literature reporting perspectives on digital health promotion (DHP) from adolescents and young adults worldwide. Methods: We conducted a scoping review of the literature on five research databases. We included papers which defined a target population of young people, and encompassed qualitative, quantitative, and mixed methods studies. Two independent reviewers thematically analyzed the included publications and provided both a quantitative and a narrative synthesis of the views of youth (namely opportunities and concerns) on digital health promotion. Results: We retrieved and analyzed 50 studies which met our inclusion and exclusion criteria. The large majority of these studies were conducted in high-income countries, while only a few collected the perspectives of youth in low- or middle-income countries. Findings revealed the importance of certain technology features, such as user interface design, as well as the significance of lack of personalization or user experience friction, for example, as deterrents to engagement with DHP tools. Ethically relevant aspects, such as those related to privacy or scientific reliability of the tools, did not receive much attention from youth. Yet, DHP for particularly sensitive areas of health elicited more frequent concerns about data security and evidence of effectiveness. Conclusions: Young people express distinct opinions and preferences concerning the use of digital technologies for health promotion. Our review identified a general appreciation and receptivity on the part of adolescents and young adults towards these technologies, even when taking potential risks into account. [ABSTRACT FROM AUTHOR]

Background: The concept of 'successful ageing' has been a prominent focus within the field of gerontology for several decades. However, despite the widespread attention paid to this concept, its intersectional implications have not been fully explored yet. This paper aims to address this gap by analyzing the potential ageist and ableist biases in the discourse of successful ageing through an intersectional lens. Method: A critical feminist perspective is taken to examine the sensitivity of the discourse of successful ageing to diversity in societies. The paper analyzes how ageist and ableist biases can manifest in the ways we conceptualize ageing, drawing on examples in the context of mental health. Results: We argue that the conventional approach to successful ageing is limited in its ability to account for the experiences of people who have faced intersectional discrimination throughout their lives. Drawing on examples in the context of mental health, we explore among others the link between depression and disabilities. Furthermore, we shed light on the negative impact of ageist and ableist attitudes concerning the diagnosis and treatment of dementia. Discussion: We demonstrate how diversity is often overlooked in discussions of ageing well, and how ageist and ableist biases can manifest in the ways we conceptualize ageing. We argue that focusing solely on the health status as a means of achieving success fails to adequately counter ageism for all people. We further emphasize the role of structural factors, such as ageist attitudes, in shaping the experience of ageing and exacerbating health inequalities. Conclusion: Overall, our findings emphasize the need for a more nuanced and inclusive understanding of ageing and therefore an intersectional approach to conceptions of ageing well that recognizes and addresses the biases and limitations of current discourses. Thereby, this paper offers valuable insights into the complex intersections between age and disabilities from a bioethical perspective, highlighting the need for a more inclusive and intersectional approach to ageing. [ABSTRACT FROM AUTHOR]

Background: Palliative care is an integral part of health care, which in term has become increasingly technologized in recent decades. Lately, innovative smart sensors combined with artificial intelligence promise better diagnosis and treatment. But to date, it is unclear: how are palliative care concepts and their underlying assumptions about humans challenged by smart sensor technologies (SST) and how can care benefit from SST? Aims: The paper aims to identify changes and challenges in palliative care due to the use of SST. In addition, normative guiding criteria for the use of SST are developed. Methods: The principle of Total Care used by the European Association for Palliative Care (EAPC) forms the basis for the ethical analysis. Drawing on this, its underlying conceptions of the human and its socio-ethical aspects are examined with a phenomenological focus. In the second step, the advantages, limitations, and socio-ethical challenges of using SST with respect to the Total Care principle are explored. Finally, ethical-normative requirements for the application of SST are derived. Results and Conclusion: First, SST are limited in their measurement capabilities. Second, SST have an impact on human agency and autonomy. This concerns both the patient and the caregiver. Third, some aspects of the Total Care principle are likely to be marginalized due to the use of SST. The paper formulates normative requirements for using SST to serve human flourishing. It unfolds three criteria according to which SST must be aligned: (1) evidence and purposefulness, (2) autonomy, and (3) Total Care. [ABSTRACT FROM AUTHOR]

Background: The nursing profession considers conscience as the foundation and cornerstone of clinical practice, which significantly influences professional decision-making and elevates the level of patient care. However, a precise definition of conscience in the nursing field is lacking, making it challenging to measure. To address this issue, this study employed the hybrid approach of Schwartz Barcott and Kim to analyze the concept of conscience-based nursing care. Methods: This approach involves a three-phase process; theoretical, fieldwork, and analytical. A systematic literature review was conducted using electronic databases during the first phase to find relevant papers. The content of 42 articles that met the inclusion criteria was extracted to determine the attributes, antecedents, and consequences of consciousness care using thematic analysis. Based on the working definition as a product of this phase, the plan of doing the fieldwork phase was designed. During this phase, data were collected through interviews with nurses all of whom were responsible for patient care in hospitals. In this phase, 5 participants were chosen for in-depth interviewing by purposeful sampling. Data were analyzed using directed content analysis. The findings of the theoretical and fieldwork phases were integrated and the final definition was derived. Results: The integration of the theoretical and fieldwork phases resulted in identifying four key characteristics of conscience-based nursing care. Firstly, it involves providing professional care with a conscientious approach. Secondly, ethics is at the core of conscience-based care. Thirdly, external spirituality plays a significant role in shaping one's conscience in this context. Finally, conscience-based nursing care is both endogenous and exogenous, with professional commitment being the central focus of care. Conclusion: Conscience-based nursing care is an essential component of ethical care, which elevates clinical practice to professional care. It requires the integration of individual and social values, influenced by personal beliefs and cultural backgrounds, and supported by professional competence, resources, and a conducive organizational atmosphere in the healthcare field. This approach leads to the provision of responsive care, moral integrity, and individual excellence, ultimately culminating in the development of professionalism in nursing. [ABSTRACT FROM AUTHOR]

Introduction: Previous research has explored euthanasia's ethical dimensions, primarily focusing on general practice and, to a lesser extent, psychiatry, mainly from the viewpoints of physicians and nurses. However, a gap exists in understanding the comprehensive value-based perspectives of other professionals involved in both somatic and psychiatric euthanasia. This paper aims to analyze the interplay among legal, medical, and ethical factors to clarify how foundational values shape the ethical discourse surrounding euthanasia in both somatic and psychiatric contexts. It seeks to explore these dynamics among all healthcare professionals and volunteers in Belgium. Methods: Semi-structured interviews were conducted with 30 Dutch-speaking healthcare workers who had encountered patients requesting euthanasia for psychiatric conditions, in Belgium, from August 2019 to August 2020. Qualitative thematic analysis was applied to the interview transcripts. Findings: Participants identified three pivotal values and virtues: religious values, professional values, and fundamental medical values encompassing autonomy, beneficence, and non-maleficence, linked to compassion, quality care, and justice. These values interwove across four tiers: the patient, the patient's inner circle, the medical realm, and society at large. Irrespective of their euthanasia stance, participants generally displayed a blend of ethical values across these tiers. Their euthanasia perspective was primarily shaped by value interpretation, significance allocation to key components, and tier weighting. Explicit mention of varying ethical values, potentially indicating distinct stances in favor of or against euthanasia, was infrequent. Conclusion: The study underscores ethical discourse's central role in navigating euthanasia's intricate landscape. Fostering inclusive dialogue, bridging diverse values, supports informed decision-making, nurturing justice, and empathy. Tailored end-of-life healthcare in psychiatry is essential, acknowledging all involved actors' needs. The study calls for interdisciplinary research to comprehensively grasp euthanasia's multifaceted dimensions, and guiding policy evolution. While contextualized in Belgium, the implications extend to the broader euthanasia discourse, suggesting avenues for further inquiry and cross-cultural exploration. [ABSTRACT FROM AUTHOR]

Background: Ethical challenges constitute an inseparable part of daily decision-making processes in all areas of healthcare. Ethical challenges are associated with moral distress that can lead to burnout. Clinical ethics support has proven useful to address and manage such challenges. This paper explores how prehospital emergency personnel manage ethical challenges. The study is part of a larger action research project to develop and test an approach to clinical ethics support that is sensitive to the context of emergency medicine. Methods: We explored ethical challenges and management strategies in three focus groups, with 15 participants in total, each attended by emergency medical technicians, paramedics, and prehospital anaesthesiologists. Focus groups were audio-recorded and transcribed verbatim. The approach to data analysis was systematic text condensation approach. Results: We stratified the management of ethical challenges into actions before, during, and after incidents. Before incidents, participants stressed the importance of mutual understandings, shared worldviews, and a supportive approach to managing emotions. During an incident, the participants employed moral perception, moral judgments, and moral actions. After an incident, the participants described sharing ethical challenges only to a limited extent as sharing was emotionally challenging, and not actively supported by workplace culture, or organisational procedures. The participants primarily managed ethical challenges informally, often using humour to cope. Conclusion: Our analysis supports and clarifies that confidence, trust, and safety in relation to colleagues, management, and the wider organisation are essential for prehospital emergency personnel to share ethical challenges and preventing moral distress turning into burnout. [ABSTRACT FROM AUTHOR]

Recent advances in methods to culture pluripotent stem cells to model human development have resulted in entities that increasingly have recapitulated advanced stages of early embryo development. These entities, referred to by numerous terms such as embryoids, are becoming more sophisticated and could resemble human embryos ever more closely as research progresses. This paper reports a systematic review of the ethical, legal, regulatory, and policy questions and concerns found in the literature concerning human embryoid research published from 2016 to 2022. We identified 56 papers that use 53 distinct names or terms to refer to embryoids and four broad categories of ethical, legal, regulatory, or policy considerations in the literature: research justifications/benefits, ethical significance or moral status, permissible use, and regulatory and oversight challenges. Analyzing the full range of issues is a critical step toward fostering more robust ethical, legal, and social implications research in this emerging area and toward developing appropriate oversight. [ABSTRACT FROM AUTHOR]

Background: There is an international move towards greater integration of health and social care to cope with the increasing demand on services.. In Scotland, legislation was passed in 2014 to integrate adult health and social care services resulting in the formation of 31 Health and Social Care Partnerships (HSCPs). Greater integration does not eliminate resource scarcity and the requirement to make (resource) allocation decisions to meet the needs of local populations. There are different perspectives on how to facilitate and improve priority setting in health and social care organisations with limited resources, but structured processes at the local level are still not widely implemented. This paper reports on work with new HSCPs in Scotland to develop a combined multi-disciplinary priority setting and resource allocation framework. Methods: To develop the combined framework, a scoping review of the literature was conducted to determine the key principles and approaches to priority setting from economics, decision-analysis, ethics and law, and attempts to combine such approaches. Co-production of the combined framework involved a multi-disciplinary workshop including local, and national-level stakeholders and academics to discuss and gather their views. Results: The key findings from the literature review and the stakeholder workshop were taken to produce a final combined framework for priority setting and resource allocation. This is underpinned by principles from economics (opportunity cost), decision science (good decisions), ethics (justice) and law (fair procedures). It outlines key stages in the priority setting process, including: framing the question, looking at current use of resources, defining options and criteria, evaluating options and criteria, and reviewing each stage. Each of these has further sub-stages and includes a focus on how the combined framework interacts with the consultation and involvement of patients, public and the wider staff. Conclusions: The integration agenda for health and social care is an opportunity to develop and implement a combined framework for setting priorities and allocating resources fairly to meet the needs of the population. A key aim of both integration and the combined framework is to facilitate the shifting of resources from acute services to the community. [ABSTRACT FROM AUTHOR]

Background: The ownership status of individual-level health data affects the manner in which it is used. In this paper we analyze two competing models of the ownership status of the data discussed in the literature recently: private ownership and public ownership.Main Body: In this paper we describe the limitations of these two models of data ownership with respect to individual-level health data, in particular in terms of ethical principles of justice and autonomy, risk mitigation, as well as technological, economic, and conceptual issues. We argue that undifferentiated application of neither private ownership nor public ownership will allow us to resolve all the problems associated with effective, equitable, and ethical use of data. We suggest that, instead of focusing on data ownership, we should focus on the institutional and procedural aspects of data governance, such as using Data Access Committees (DACs) or equivalent managed access processes, which can balance the elements of these two ownership frameworks.Conclusion: Undifferentiated application of the ownership concept (private or public) is not helpful in resolving problems associated with sharing individual-level health data. DACs or equivalent managed access processes should be an integral part of data governance. They can approve or disapprove data access requests after considering the potential benefits and harms to data subjects, their communities, primary researchers, and the wider society. [ABSTRACT FROM AUTHOR]

Background: Medical Assistance in Dying (MAiD) was legalized in Canada in 2016 and amended in 2021. At the time that this study was conducted, the federal government was considering expanding the eligibility criteria to include patients whose death was not reasonably foreseeable. The purpose of this study was to better understand rural healthcare professionals' experiences with assisted dying set against the backdrop of legislative expansion. Methods: A qualitative exploratory study was undertaken with general rural practice physicians, nurse practitioners, registered nurses, ethicists, patients, and patient families in rural Southern Alberta, Canada. For this paper, data from 18 audio-recorded and transcribed semi-structured interviews with healthcare professionals were analyzed using thematic analysis. Categories and patterns of shared meaning that linked to an overarching theme were identified. Results: Between the binary positions of full support for and conscientious objection to assisted dying, rural healthcare professionals' decisions to participate in MAiD was based on their moral convictions, various contextual factors, and their participation thresholds. Factors including patient suffering; personal and professional values and beliefs; relationships with colleagues, patients and family, and community; and changing MAiD policy and legislation created nuances that informed their decision-making. Conclusions: The interplay of multiple factors and their degree of influence on healthcare professionals' decision-making create multiple decision points between full support for and participation in MAiD processes and complete opposition and/or abstention. Moreover, our findings suggest evolving policy and legislation have the potential to increase rural healthcare professionals' uncertainty and level of discomfort in providing services. We propose that the binary language typically used in the MAiD discourse be reframed to reflect that decision-making processes and actions are often fluid and situational. [ABSTRACT FROM AUTHOR]

The culling of animals that are infected, or suspected to be infected, with COVID-19 has fuelled outcry. What might have contributed to the ongoing debates and discussions about animal rights protection amid global health crises is the lack of a unified understanding and internationally agreed-upon definition of "One Health". The term One Health is often utilised to describe the imperative to protect the health of humans, animals, and plants, along with the overarching ecosystem in an increasingly connected and globalized world. However, to date, there is a dearth of research on how to balance public health decisions that could impact all key stakeholders under the umbrella of One Health, particularly in contexts where human suffering has been immense. To shed light on the issue, this paper discusses whether One Health means "human-centred connected health" in a largely human-dominated planet, particularly amid crises like COVID-19. The insights of this study could help policymakers make more informed decisions that could effectively and efficiently protect human health while balancing the health and well-being of the rest of the inhabitants of our shared planet Earth. [ABSTRACT FROM AUTHOR]

Background Scientific and technological advancements in mapping and understanding the interrelated pathways through which biological and environmental exposures affect disease development create new possibilities for detecting disease risk factors. Early detection of such risk factors may help prevent disease onset or moderate the disease course, thereby decreasing associated disease burden, morbidity, and mortality. However, the ethical implications of screening for disease risk factors are unclear and the current literature provides a fragmented and case-by-case picture. Methods To identify key ethical considerations arising from the early detection of disease risk factors, we performed a systematic scoping review. The Scopus, Embase, and Philosopher’s Index databases were searched for peerreviewed, academic records, which were included if they were written in English or Dutch and concerned the ethics of (1) early detection of (2) disease risk factors for (3) disease caused by environmental factors or gene-environment interactions. All records were reviewed independently by at least two researchers. Results After screening 2034 titles and abstracts, and 112 full papers, 55 articles were included in the thematic synthesis of the results. We identified eight common ethical themes: (1) Reliability and uncertainty in early detection, (2) autonomy, (3) privacy, (4) beneficence and non-maleficence, (5) downstream burdens on others, (6) responsibility, (7) justice, and (8) medicalization and conceptual disruption. We identified several gaps in the literature, including a relative scarcity of research on ethical considerations associated with environmental preventive health interventions, a dearth of practical suggestions on how to address expressed concerns about overestimating health capacities, and a lack of insights into preventing undue attribution of health responsibility to individuals. Conclusions The ethical concerns arising with the early detection of risk factors are often interrelated and complex. Comprehensive ethical analyses are needed that are better embedded in normative frameworks and also assess and weigh the expected benefits of early risk factor detection. Such research is necessary for developing and implementing responsible and fair preventive health policies. [ABSTRACT FROM AUTHOR]

Background: In the last decade, there has been a growing concern to make palliative care more culturally sensitive and contextually appropriate. This concern is also relevant in Indonesia, where the progress of palliative care, particularly in home-based care, has been slow. Like elsewhere in the world, there has been a growing awareness of the importance of shifting from a curative orientation towards a palliative one, especially in cases where further medical treatment is futile. In this paper we argue that the development of palliative care practices would benefit greatly from learning about the values that are important for patients, families, and health professionals. It is important to understand these values to support forms of care that aim to enhance quality of life. To demonstrate this, we analyse the care values people in rural Java evoke in their home palliative care practices. Methods: We conducted an eight-month ethnographic study involving forty-nine patients, families, and health professionals. Results: We identified three specific Javanese Islamic values: making an effort (ikhtiar), being sincere (ikhlas), and being in a state of surrender (pasrah). These values influenced the participants' activities in a palliative care setting. Based on our findings, we suggest three strategies to incorporate these values into palliative care practices and to better facilitate palliative care's integration into Javanese Muslim communities. The first strategy is to include efforts to reduce suffering and improve the quality of life using the concept of ikhtiar. The second strategy is to foster sincerity (ikhlas) to help patients and families accept the realities of their condition and provide care for patients at home. The last strategy is to clarify that palliative care is not synonymous with 'giving up' but can be seen as an act of pious surrender. Conclusions: Our study identified three Islamic-Javanese values that can be incorporated to strategies aiming at enhancing palliative care practices, resulting in care focused on improving quality of life rather than futile attempts at a cure. [ABSTRACT FROM AUTHOR]

Amidst the ever-changing and increasingly complex challenges facing the planet and humanity, there is a growing need to educate the next generation of environmental stewards and leaders who are global citizens with sustainability mindsets. Universities have come a long way in developing sustainability programs – both in the curriculum and in terms of campus operations. Many research universities are highly focused on cutting-edge science and technology to address global challenges, and funders are looking for that innovation and entrepreneurialism. These are noteworthy efforts, but do they give students what they need or want? Has the commercialization and corporatization of college campuses led to a shift away from the notion that higher education is a public good that benefits society, not just individuals? Beyond the technical expertise, 21st century challenges demand that the workforce be diverse and capable of recognizing and tackling ethical, cultural, and equity issues for a sustainable and just future. An ethics-driven and interdisciplinarity curriculum framed around the Sustainable Development Goals (SDG), civic engagement, and experiential learning that allows students to put their knowledge into action is needed to prepare individuals for such a workforce. This paper provides both a critique of areas in which higher education is falling short of its responsibilities and some translatable models and opportunities for improvements in reframing sustainability initiatives on campus, including in the curriculum. Policy and Practice Recommendations • Campus leaders and faculty should take note of surveys of younger generations, especially Gen Z and Gen alpha, as they provide valuable insights into what youth are focused on and what knowledge and set of skills they desire to become innovative problem solvers and builders of more resilient communities. • To prepare the next generation of environmental stewards and leaders, high impact practices that move knowledge to action are needed. • Sustainability topics should be incorporated across the curriculum on campuses, not just in certain majors. • Higher education needs to re-embrace the notion of service to the public good and work collaboratively across institutions and sectors to address complex societal challenges. [ABSTRACT FROM AUTHOR]

Background: Standards generally reported in the literature about informing children and respecting their consent or refusal before elective heart surgery may differ from actual practice. This research aims to summarize the main themes in the literature about paediatric anaesthesia and compare these with research findings on how health professionals counsel young children before elective heart surgery, respect their consent or refusal, and maintain patient-centred care.Methods: This qualitative research involved: literature reviews about children's consent to surgery and major interventions; observations of wards, clinics and medical meetings in two paediatric cardiology departments, October 2019 to February 2020; audio-recorded semi-structured interviews with 45 hospital staff, including 5 anaesthetists, and related experts, November 2019 to April 2021; interviews with 16 families, with children aged 6- to 15-years and their parents shortly after elective heart surgery, and some months later (reported in other papers); thematic data analysis; and research reports on how different professions contribute to children's informed decisions for heart surgery.Results: The medical, ethics and English legal literature tend to assume legal minors cannot refuse major recommended treatment, and cannot consent until they are 12 years or older. Little is said about informing pre-competent children. If children resist, some anaesthetists rely on sedation and distraction, and avoid much informed discussion, aiming to reduce peri-operative anxiety. However, interviewees reported informing young children, and respecting their consent or refusal before elective surgery. They may delay elective surgery and provide further information and support, aiming to reduce fear and promote trust. Six years of age was commonly cited as the threshold for respecting consent to heart transplantation.Conclusion: Differing views about younger children's competence, anxiety and best interests support different reactions to children's consent and refusal before elective heart surgery. This paper reports the zero-restraint policy followed for over a decade in at least one leading surgery centre. The related law and literature need to be updated, to take more account of evidence of actual practice. [ABSTRACT FROM AUTHOR]

Background: Pregnant people have been overlooked or excluded from clinical research, resulting in a lack of scientific knowledge on medication safety and efficacy during pregnancy. Thus far, both the opportunities to generate evidence-based knowledge beyond clinical trials and the role of pregnant people in changing their status quo have not been discussed. Some scholars have argued that for rare disease patients, for whom, just like pregnant people, a poor evidence base exists regarding treatments, solidarity has played an important role in addressing the evidence gap. This paper explores whether and how the enactment of solidarity among pregnant people can be stimulated to help address the poor evidence base on medications used during pregnancy. Method: We use the concept of solidarity formulated by Prainsack and Buyx and enrich their concept by providing an account for stimulating the enactment of solidarity. Then we apply this account to the case of pregnant people who use medication. Results: Solidarity means enacted commitment on the part of an individual to assisting others with whom the person recognizes a similarity in a relevant respect. Although solidarity cannot be imposed, we argue that the empowerment of people is a crucial concept in understanding how solidarity can be stimulated. Empowerment in the context of pregnant people means creating awareness about their status quo, explaining how scientific research can help close the knowledge gap, and how pregnant people can themselves contribute. In particular, how pregnant people can contribute to the collection of health data to strengthen the evidence base for medications used during pregnancy. Conclusions: We conclude that acting in solidarity can help change the status quo for pregnant people. Furthermore, we argue that the empowerment of pregnant people and other relevant stakeholders is a way to stimulate the enactment of solidarity. The process of empowerment starts by raising awareness about the lack of evidence on medications used during prengnacy and by explaining to pregnant people how they can contribute to changing the way knowledge is being generated by, for example, sharing data on the health effects of medications. [ABSTRACT FROM AUTHOR]

Background: The world is threatened by future pandemics. Vaccines can play a key role in preventing harm, but there will inevitably be shortages because there is no possibility of advance stockpiling. We therefore need some method of prioritising access.Main Text: This paper reports a critical interpretative review of the published literature that discusses ethical arguments used to justify how we could prioritise vaccine during an influenza pandemic. We found that the focus of the literature was often on proposing different groups as priorities (e.g. those with pre-existing health conditions, the young, the old, health care workers etc.). Different reasons were often suggested as a means of justifying such priority groupings (e.g. appeal to best overall outcomes, fairness, belonging to a vulnerable or 'at risk' group etc.). We suggest that much of the literature, wrongly, assumes that we are able to plan priority groups prior to the time of a particular pandemic and development of a particular vaccine. We also point out the surprising absence of various issues from the literature (e.g. how vaccines fit within overall pandemic planning, a lack of specificity about place, issues of global justice etc.).Conclusions: The literature proposes a wide range of ways to prioritise vaccines, focusing on different groups and 'principles'. Any plan to use pandemic vaccine must provide justifications for its prioritisation. The focus of this review was influenza pandemic vaccines, but lessons can be learnt for future allocations of coronavirus vaccine, if one becomes available. [ABSTRACT FROM AUTHOR]

Background: The COVID-19 pandemic accelerated the development and application of telemonitoring, enabling health care providers to continue to provide medical care. Telemonitoring oftentimes replaced face-to-face health care services instead of as being offered as a supplement to regular medical care. Given that pressure on hospitals is expected to remain, telemonitoring is seen as an important means of alleviating those pressures. In this paper, we consider the intensified deployment of telemonitoring during the pandemic as an excellent opportunity to learn how telemonitoring can be implemented in a morally responsible way. Results: In order to gain concrete, contextual and in-depth knowledge of the ethical issues raised by telemonitoring during the corona pandemic, we explore telemonitoring for two conditions: COVID-19 and Idiopathic pulmonary fibrosis. We conducted interviews with patients and professionals on five important ethical themes: 1. a shift in responsibilities, 2. empowerment and self-management, 3. the value of face-to-face consultations, 4. inclusivity and equal access, and 5. privacy and big data. Based on the findings of this empirical study and medical ethical principles, we formulate lessons for responsible implementation and upscaling: 1. ensure explicit and realistic allocation of responsibilities and avoid expectations that monitoring is more direct and continuous than it actually is; 2. create opportunities for an optimal form of self-management—in particular for patients with chronic conditions—and for meaningful conversations; 3. integrate telemonitoring within an established HCP – patient trust relation and stimulate research on the conditions for face-to-face consultations; 4. take vulnerability into account in inclusion & exclusion criteria and involve patients in design and implementation processes; 5. concerns of collection of data are beyond privacy and identify the risks of dependency on commercial companies. Conclusions: Our findings show that offering patients choices for telemonitoring will not necessarily result in increased and equal accessibility, good quality of care and patient autonomy. Whether or not these aims and promises will be fulfilled, and the ethical challenges adequately met, is highly dependent on choices regarding the design of specific monitoring systems, the development process and the embeddedness in a trusting physician–patient relationship. [ABSTRACT FROM AUTHOR]

On January 2020, the WHO Director General declared that the outbreak constitutes a Public Health Emergency of International Concern. The world has faced a worldwide spread crisis and is still dealing with it. The present paper represents a white paper concerning the tough lessons we have learned from the COVID-19 pandemic. Thus, an international and heterogenous multidisciplinary panel of very differentiated people would like to share global experiences and lessons with all interested and especially those responsible for future healthcare decision making. With the present paper, international and heterogenous multidisciplinary panel of very differentiated people would like to share global experiences and lessons with all interested and especially those responsible for future healthcare decision making. [ABSTRACT FROM AUTHOR]

Background: Ethical challenges constitute an inseparable part of daily decision-making processes in all areas of healthcare. In prehospital emergency medicine, decision-making commonly takes place in everyday life, under time pressure, with limited information about a patient and with few possibilities of consultation with colleagues. This paper explores the ethical challenges experienced by prehospital emergency personnel. Methods: The study was grounded in the tradition of action research related to interventions in health care. Ethical challenges were explored in three focus groups, each attended by emergency medical technicians, paramedics, and prehospital anaesthesiologists. The participants, 15 in total, were recruited through an internal information network of the emergency services. Focus groups were audio-recorded and transcribed verbatim. Results: The participants described ethical challenges arising when clinical guidelines, legal requirements, and clinicians' professional and personal value systems conflicted and complicated decision-making processes. The challenges centred around treatment at the end of life, intoxicated and non-compliant patients, children as patients—and their guardians, and the collaboration with relatives in various capacities. Other challenges concerned guarding the safety of oneself, colleagues and bystanders, prioritising scarce resources, and staying loyal to colleagues with different value systems. Finally, challenges arose when summoned to situations where other professionals had failed to make a decision or take action when attending to patients whose legitimate needs were not met by the appropriate medical or social services, and when working alongside representatives of authorities with different roles, responsibilities and tasks. Conclusion: From the perspective of the prehospital emergency personnel, ethical challenges arise in three interrelated contexts: when caring for patients, in the prehospital emergency unit, and during external collaboration. Value conflicts may be identified within these contexts as well as across them. A proposed model of analysis integrating the above contexts can assist in shedding light on ethical challenges and value conflicts in other health care settings. The model emphasises that ethical challenges are experienced from a particular professional perspective, in the context of the task at hand, and in a particular, the organisational setting that includes work schedules, medical guidelines, legal requirements, as well as professional and personal value systems. [ABSTRACT FROM AUTHOR]

Background: The rise of a new generation of intelligent neuroprostheses, brain-computer interfaces (BCI) and adaptive closed-loop brain stimulation devices hastens the clinical deployment of neurotechnologies to treat neurological and neuropsychiatric disorders. However, it remains unclear how these nascent technologies may impact the subjective experience of their users. To inform this debate, it is crucial to have a solid understanding how more established current technologies already affect their users. In recent years, researchers have used qualitative research methods to explore the subjective experience of individuals who become users of clinical neurotechnology. Yet, a synthesis of these more recent findings focusing on qualitative methods is still lacking. Methods: To address this gap in the literature, we systematically searched five databases for original research articles that investigated subjective experiences of persons using or receiving neuroprosthetics, BCIs or neuromodulation with qualitative interviews and raised normative questions. Results: 36 research articles were included and analysed using qualitative content analysis. Our findings synthesise the current scientific literature and reveal a pronounced focus on usability and other technical aspects of user experience. In parallel, they highlight a relative neglect of considerations regarding agency, self-perception, personal identity and subjective experience. Conclusions: Our synthesis of the existing qualitative literature on clinical neurotechnology highlights the need to expand the current methodological focus as to investigate also non-technical aspects of user experience. Given the critical role considerations of agency, self-perception and personal identity play in assessing the ethical and legal significance of these technologies, our findings reveal a critical gap in the existing literature. This review provides a comprehensive synthesis of the current qualitative research landscape on neurotechnology and the limitations thereof. These findings can inform researchers on how to study the subjective experience of neurotechnology users more holistically and build patient-centred neurotechnology. [ABSTRACT FROM AUTHOR]

The overarching biological impact of microbiomes on their hosts, and more generally their environment, reflects the co-evolution of a mutualistic symbiosis, generating fitness for both. Knowledge of microbiomes, their systemic role, interactions, and impact grows exponentially. When a research field of importance for planetary health evolves so rapidly, it is essential to consider it from an ethical holistic perspective. However, to date, the topic of microbiome ethics has received relatively little attention considering its importance. Here, ethical analysis of microbiome research, innovation, use, and potential impact is structured around the four cornerstone principles of ethics: Do Good; Don't Harm; Respect; Act Justly. This simple, but not simplistic approach allows ethical issues to be communicative and operational. The essence of the paper is captured in a set of eleven microbiome ethics recommendations, e.g., proposing gut microbiome status as common global heritage, similar to the internationally agreed status of major food crops. [ABSTRACT FROM AUTHOR]

Background: We sought to understand the main ethical considerations when conducting clinical trials in the prehospital ambulance based setting.Methods: A systematic review of the literature on randomised controlled trials in ambulance settings was undertaken. A search of eight databases identified published studies involving recruitment of ambulance service users. Four independent authors undertook abstract and full-text reviews to determine eligibility and extract relevant data. The data extraction concentrated on ethical considerations, with any discussion of ethics being included for further analysis. The resultant data were combined to form a narrative synthesis.Results: In all, 56 papers were identified as meeting the inclusion criteria. Issues relating to consent were the most significant theme identified. Type of consent differed depending on the condition or intervention being studied. The country in which the research took place did not appear to influence the type of consent, apart from the USA where exception from consent appeared to be most commonly used. A wide range of terms were used to describe consent.Conclusions: Consent was the main ethical consideration in published ambulance based research. A range of consent models were used ranging from informed consent to exception from consent (waiver of consent). Many studies cited international guidelines as informing their choice of consent model but diverse and sometimes confused terms were used to describe these models. This suggests that standardisation of consent models and the terminology used to describe them is warranted. [ABSTRACT FROM AUTHOR]

Background: The health sector aims to improve health outcomes and access to healthcare. At the same time, the sector relies on unsustainable environmental practices that are increasingly recognised to be catastrophic threats to human health and health inequities. As such, a moral imperative exists for the sector to address these practices. While strides are currently underway to mitigate the environmental impacts of healthcare, less is known about how health researchers are addressing these issues, if at all. Methods: This paper uses an interview methodology to explore the attitudes of UK health researchers using data-intensive methodologies about the adverse environmental impacts of their practices, and how they view the importance of these considerations within wider health goals. Results: Interviews with 26 researchers showed that participants wanted to address the environmental and related health harms associated with their research and they reflected on how they could do so in alignment with their own research goals. However, when tensions emerged, their own research was prioritised. This was related to their own desires as researchers and driven by the broader socio-political context of their research endeavours. Conclusion: To help mitigate the environmental and health harms associated with data-intensive health research, the socio-political context of research culture must be addressed. [ABSTRACT FROM AUTHOR]

Background: The practice of clinical research is strictly regulated by law. During submission and review processes, compliance of such research with the laws enforced in the country where it was conducted is not always correctly filled in by the authors or verified by the editors. Here, we report a case of a single institution for which one may find hundreds of publications with seemingly relevant ethical concerns, along with 10 months of follow-up through contacts with the editors of these articles. We thus argue for a stricter control of ethical authorization by scientific editors and we call on publishers to cooperate to this end. Methods: We present an investigation of the ethics and legal aspects of 456 studies published by the IHU-MI (Institut Hospitalo-Universitaire Méditerranée Infection) in Marseille, France. Results: We identified a wide range of issues with the stated research authorization and ethics of the published studies with respect to the Institutional Review Board and the approval presented. Among the studies investigated, 248 were conducted with the same ethics approval number, even though the subjects, samples, and countries of investigation were different. Thirty-nine (39) did not even contain a reference to the ethics approval number while they present research on human beings. We thus contacted the journals that published these articles and provide their responses to our concerns. It should be noted that, since our investigation and reporting to journals, PLOS has issued expressions of concerns for several publications we analyze here. Conclusion: This case presents an investigation of the veracity of ethical approval, and more than 10 months of follow-up by independent researchers. We call for stricter control and cooperation in handling of these cases, including editorial requirement to upload ethical approval documents, guidelines from COPE to address such ethical concerns, and transparent editorial policies and timelines to answer such concerns. All supplementary materials are available. [ABSTRACT FROM AUTHOR]

Background: The coronavirus 2019 pandemic placed unprecedented pressures on healthcare services and magnified ethical dilemmas related to how resources should be allocated. These resources include, among others, personal protective equipment, personnel, life-saving equipment, and vaccines. Decision-makers have therefore sought ethical decision-making tools so that resources are distributed both swiftly and equitably. To support the development of such a decision-making tool, a systematic review of the literature on relevant ethical values and principles was undertaken. The aim of this review was to identify ethical values and principles in the literature which relate to the equitable allocation of resources in response to an acute public health threat, such as a pandemic.Methods: A rapid systematic review was conducted using MEDLINE, EMBASE, Google Scholar, LitCOVID and relevant reference lists. The time period of the search was January 2000 to 6th April 2020, and the search was restricted to human studies. January 2000 was selected as a start date as the aim was to capture ethical values and principles within acute public health threat situations. No restrictions were made with regard to language. Ethical values and principles were extracted and examined thematically.Results: A total of 1,618 articles were identified. After screening and application of eligibility criteria, 169 papers were included in the thematic synthesis. The most commonly mentioned ethical values and principles were: Equity, reciprocity, transparency, justice, duty to care, liberty, utility, stewardship, trust and proportionality. In some cases, ethical principles were conflicting, for example, Protection of the Public from Harm and Liberty.Conclusions: Allocation of resources in response to acute public health threats is challenging and must be simultaneously guided by many ethical principles and values. Ethical decision-making strategies and the prioritisation of different principles and values needs to be discussed with the public in order to prepare for future public health threats. An evidence-based tool to guide decision-makers in making difficult decisions is required. The equitable allocation of resources in response to an acute public health threat is challenging, and many ethical principles may be applied simultaneously. An evidence-based tool to support difficult decisions would be helpful to guide decision-makers. [ABSTRACT FROM AUTHOR]

Aim: This systematic review explored how non-medical factors influence the prehospital resuscitation providers' decisions whether or not to resuscitate adult patients with cardiac arrest. Methods: We conducted a mixed-methods systematic review with a narrative synthesis and searched for original quantitative, qualitative, and mixed-methods studies on non-medical factors influencing resuscitation of out-of-hospital cardiac arrest. Mixed-method reviews combine qualitative, quantitative, and mixed-method studies to answer complex multidisciplinary questions. Our inclusion criteria were peer-reviewed empirical-based studies concerning decision-making in prehospital resuscitation of adults > 18 years combined with non-medical factors. We excluded commentaries, case reports, editorials, and systematic reviews. After screening and full-text review, we undertook a sequential exploratory synthesis of the included studies, where qualitative data were synthesised first followed by a synthesis of the quantitative findings. Results: We screened 15,693 studies, reviewed 163 full-text studies, and included 27 papers (12 qualitative, two mixed-method, and 13 quantitative papers). We identified five main themes and 13 subthemes related to decision-making in prehospital resuscitation. Especially the patient's characteristics and the ethical aspects were included in decisions concerning resuscitation. The wishes and emotions of bystanders further influenced the decision-making. The prehospital resuscitation providers' characteristics, experiences, emotions, values, and team interactions affected decision-making, as did external factors such as the emergency medical service system and the work environment, the legislation, and the cardiac arrest setting. Lastly, prehospital resuscitation providers' had to navigate conflicts between jurisdiction and guidelines, and conflicting values and interests. Conclusions: Our findings underline the complexity in prehospital resuscitation decision-making and highlight the need for further research on non-medical factors in out-of-hospital cardiac arrest. [ABSTRACT FROM AUTHOR]

Progress in gene drive research has engendered a lively discussion about community engagement and the ethical standards the work hinges on. While there is broad agreement regarding ethical principles and established best practices for conducting clinical public health research, projects developing area-wide vector control technologies and initiating ambitious engagement strategies raise specific questions: who to engage, when to engage, and how? When responding to these fundamental questions, with few best practices available for guidance, projects need to reflect on and articulate the ethical principles that motivate and justify their approach. Target Malaria is a not-for-profit research consortium that aims to develop and share malaria control and elimination technology. The consortium is currently investigating the potential of a genetic technique called gene drive to control populations of malaria vectoring mosquito species Anopheles gambiae. Due to the potentially broad geographical, environmental impact of gene drive technology, Target Malaria has committed to a robust form of tailored engagement with the local communities in Burkina Faso, Mali, and Uganda, where research activities are currently taking place. This paper presents the principles guiding Target Malaria's engagement strategy. Herein the authors (i) articulate the principles; (ii) explain the rationale for selecting them; (iii) share early lessons about the application of the principles. Since gene drive technology is an emerging technology, with few best practices available for guidance, the authors hope by sharing these lessons, to add to the growing literature regarding engagement strategies and practices for area-wide vector control, and more specifically, for gene drive research. [ABSTRACT FROM AUTHOR]

Background: Under dentistry's social contract with the public, dental professionals have a social responsibility to address the oral health needs of the population at large. However, dental education places little emphasis on such moral commitments. By ascertaining dental students' stance regarding these notions, we may be able to inform changes in dental education. This paper thus explores dental students' comprehension of dentistry's social contract using the concepts of moral inclusion, moral community and empathy. Methods: A cross-sectional online survey collected information from undergraduate dental students at the Faculty of Dentistry, University of Toronto (N = 430). Moral inclusion was assessed through the breadth of students' moral community by computing a "moral inclusion score" (MIS) from Likert scale responses to statements that asked students about their duty of care for different population groups, wherein a higher MIS indicated a broader moral community and in turn greater moral inclusiveness. Empathy was assessed using Likert scale responses to statements that gauged the extent to which students understood the effect of social determinants on people's health. Association of the MIS with environmental, institutional and student-related factors was also investigated using non-parametric tests and linear regression. Results: The survey yielded a response rate of 51.4% (n = 221). Overall, students in this sample were morally inclusive and displayed empathy. Regression results showed that the MIS was most strongly associated with choosing a small town/rural area as a future practice location (β = 4.76, 95% CI: 0.52, 9.01) and viewing patients as consumers (β = -3.71, 95%CI: -7.13, -0.29). Conclusion: Students in this sample made morally inclusive choices, which implied that they had a basic understanding of the obligations under dentistry's social contract. Improving knowledge and experience with regards to addressing the social and economic determinants of oral health and access to oral health care may positively influence students' perceptions of their professional duties under the social contract. [ABSTRACT FROM AUTHOR]

Antimicrobial resistance (AMR) is a "silent pandemic" that threatens the efficacy of antibiotics and other antimicrobials. It is imperative to take into account the ethical implications of how these resources are used and distributed as the world deals with this silent pandemic. This commentary discusses the ethical considerations surrounding the use and distribution of antibiotics in the age of resistance, including issues of equity and access, responsibility for antimicrobial stewardship, the environmental impact of antibiotic use, and the development and promotion of these drugs. The ethical implications of unequal access to antibiotics and the role of social determinants of health in shaping this access are considered, as well as the globalization of AMR and the need for multiple stakeholders to be involved in addressing this issue. The opportunities of antimicrobial stewardship programmes for optimising antibiotic use and reducing the emergence and spread of resistant bacteria, as well as the ethical implications of implementing such programmes, are examined. The potential environmental outcomes of antibiotic use and the ethical implications of these impacts are also discussed, as well as the role of the pharmaceutical industry in the development and promotion of these drugs, the potential conflicts of interest that may arise and the ethical dimension of resource transfer from Global North to Global South. This paper emphasises the significance of a holistic strategy to AMR that considers these ethical components, as well as the importance of preserving antibiotic efficacy for future generations. [ABSTRACT FROM AUTHOR]

Background: Emergency separation of conjoined twins is performed when one twin is already dead or dying and threatens the survival of the other. The particular decision to perform an emergency separation of conjoined twins provides an ethical dilemma that needs special attention. Adding to the complexity of surgical and postsurgical management in emergency separation, ethical and sociocultural aspects further complicate decision-making. Case presentation: From 1987 to 2022, 18 conjoined twin separations were performed in our centre. This paper describes three conjoined twin emergency separations. In the first case of thoracoomphalopagus babies at nine days of age, one baby was diagnosed with necrotizing enterocolitis with frequent desaturation and seizures, and the other baby was healthy. Emergency separation was performed on the twelfth day of age; unfortunately, neither baby survived the surgery. In the second case, emergency separation was performed on the 110th day of life due to sepsis in one baby. The nonseptic twin passed away six hours after surgery, while the septic twin died 12 days after surgery due to wound dehiscence and abdominal sepsis. The third case was of an omphalopagus conjoined twin with a parasitic twin. The healthy baby was deemed nonviable but found to be healthy upon birth. Immediate emergency separation was performed at 2 h of age. The living baby survived the surgery but passed away two months later. Conclusions: When separation is deemed necessary to save one twin, it becomes difficult to apply standard ethical medical reasoning. The decision to separate results in most cases in very high-risk surgeries with poor outcomes during surgery and postsurgery. Compounded by the complexity of the case, sociocultural and religious aspects further add to the dynamics of decision-making. A multidisciplinary team must work together with a health ethics committee and navigate through this ethical conundrum with the patient and family at its decision-making centre to decide on the best plan of care. [ABSTRACT FROM AUTHOR]

Objectives: Ethical dilemmas at both the individual and structural level are part of the daily work of midwives and gender inequality and injustice can affect women's sexual and reproductive health. Mainstream bioethical theory has been criticized for neglecting women's issues. To ensure women's experiences are addressed, a gender lens on ethics is crucial. Aim: This study develops a theory model by exploring ethical dilemmas related to gender in the context of maternity care from the perspective of midwifery science and feminist ethics. Methods: The research strategy followed a coherent stepwise approach: literature search, thematic analysis, elaboration of a gender ethics protocol, and the integration of various components into a preliminary gender ethics model for midwifery. Findings: A literature search was performed using Scopus and Web of Science to identify ethical dilemmas in maternity care linked to gender and power. The search of articles published between 1996 and 2019 returned 61 abstracts. These abstracts were screened and assigned one of the following themes: The Midwifery Profession, The Rights of the Woman, Fetal Rights Dominate, and Medicalization of Pregnancy and Childbirth. A tentative gender ethics frame was developed and tested on two articles on abortion, one from Denmark and one from Japan. The protocol facilitated the gender analysis of ethical dilemmas related to abortion, which were related to the imbalance of power relations in health care. In the final step, we synthesized the dimensions of gender and power in a gender ethics model for midwifery. Discussion: The gender ethics protocol developed revealed gendered dimensions of ethical dilemmas in midwifery. This gender analysis adds to the understanding of the "do no harm" principle by revealing assumptions and stereotypes that promote unequal power relations. The gender ethics model is an innovative approach that envisions and exposes power imbalance at the micro, meso, and macro levels. Conclusions: The protocol could improve gender competence among researchers, midwives/professionals, and midwifery students throughout the world. Plain Language summary: As gender inequity, gender inequality, and oppression infuse dimensions in all human cultures and societies, not the least in midwifery practice where the layers of injustice affect women during pregnancy and birth in high-, middle-, and low-income countries, the time has come to renew the perspectives of normative ethics. In this study, we explore gender ethical dilemmas unique to maternity care from the perspective of midwifery science and feminist ethics. A literature search uncovered ethical dilemmas in midwifery, and four broad themes were identified: Midwifery Profession, Rights of the Woman, Fetal Rights Dominate, and Medicalization of Pregnancy and Childbirth. Next, we developed a gender ethics protocol suitable for providing gender ethical interpretations of results. The protocol was tested and refined using two articles (one from the Denmark and one from Japan) that address ethical dilemmas of abortion care. The pilot analysis indicates that the autonomy of midwives and their scope of practice might be constrained and that the obstetric medicalized/authoritative knowledge still plays a dominate role in maternity practice. Here, we present an elaborate model, gender ethics model for midwifery (GEMM), developed for midwifery science that can be further refined. The model challenges the views of maternity care and contributes to a deeper understanding of how fluid concepts such as gender and power circulate and influence women's and birthing person's sexual and reproductive health. Statement of significance: Problem or issue Layers of injustice affect women during pregnancy and birth in both high-, middle-, and low-income countries. The time has come to renew the perspectives of normative ethics. What is already known? Globally, ethical dilemmas at both the individual and structural levels pervade the daily work of midwives, but ethical research that includes gender theory in midwifery science is limited. What this paper adds Here, we present a gender ethics protocol and develop an innovative gender theory ethics model for midwifery to improve gender competence among researchers, midwives/professionals, and midwifery students. [ABSTRACT FROM AUTHOR]

Background: The biopharmaceutical industry operates at the intersection of life sciences, clinical research, clinical care, public health, and business, which presents distinct operational and ethical challenges. This setting merits focused bioethics consideration to complement legal compliance and business ethics efforts. However, bioethics as applied to a biopharmaceutical industry setting often is construed either too broadly or too narrowly with little examination of its proper scope.Main Text: Any institution with a scientific or healthcare mission should engage bioethics norms to navigate ethical issues that arise from the conduct of biomedical research, delivery of clinical care, or implementation of public health programs. It is reasonable to assume that while bioethics norms must remain constant, their application will vary depending on the characteristics of a given setting. Context "specification" substantively refines ethics norms for a particular discipline or setting and is an expected, needed and progressive ethical activity. In order for this activity to be meaningful, the scope for bioethics application and the relevant contextual factors of the setting need to be delineated and appreciated. This paper defines biopharmaceutical bioethics as: the application of bioethics norms (concepts, principles, and rules) to the research, development, supply, commercialization, and clinical use of biopharmaceutical healthcare products. It provides commentary on this definition, and presents five contextual factors that need to be considered when applying bioethics norms to a biopharmaceutical industry setting: (1) dual missions; (2) timely and pragmatic guidance; (3) resource stewardship; (4) multiple stakeholders; and (5) operational complexity.Conclusion: Understanding the scope of the biopharmaceutical enterprise and contextual factors of a biopharmaceutical industry setting is foundational for the application of bioethics norms. Establishing a common language and approach for biopharmaceutical bioethics will facilitate breadth and depth of discussion and subsequent implementation to benefit patients, the healthcare system and society. [ABSTRACT FROM AUTHOR]

Over the past decade, bioethicists, legal scholars and social scientists have started to investigate the potential implications of epigenetic research and technologies on medicine and society. There is growing literature discussing the most promising opportunities, as well as arising ethical, legal and social issues (ELSI). This paper explores the views of epigenetic researchers about some of these discussions. From January to March 2020, we conducted an online survey of 189 epigenetic researchers working in 31 countries. We questioned them about the scope of their field, opportunities in different areas of specialization, and ELSI in the conduct of research and knowledge translation. We also assessed their level of concern regarding four emerging non-medical applications of epigenetic testing—i.e., in life insurance, forensics, immigration and direct-to-consumer testing. Although there was strong agreement on DNA methylation, histone modifications, 3D structure of chromatin and nucleosomes being integral elements of the field, there was considerable disagreement on transcription factors, RNA interference, RNA splicing and prions. The most prevalent ELSI experienced or witnessed by respondents were in obtaining timely access to epigenetic data in existing databases, and in the communication of epigenetic findings by the media. They expressed high levels of concern regarding non-medical applications of epigenetics, echoing cautionary appraisals in the social sciences and humanities literature. [ABSTRACT FROM AUTHOR]

The rise of precision medicine has led to an unprecedented focus on human biological material in biomedical research. In addition, rapid advances in stem cell technology, regenerative medicine and synthetic biology are leading to more complex human tissue structures and new applications with tremendous potential for medicine. While promising, these developments also raise several ethical and practical challenges which have been the subject of extensive academic debate. These debates have led to increasing calls for longitudinal governance arrangements between tissue providers and biobanks that go beyond the initial moment of obtaining consent, such as closer involvement of tissue providers in what happens to their tissue, and more active participatory approaches to the governance of biobanks. However, in spite of these calls, such measures are being adopted slowly in practice, and there remains a strong tendency to focus on the consent procedure as the tool for addressing the ethical challenges of contemporary biobanking. In this paper, we argue that one of the barriers to this transition is the dominant language pervading the field of human tissue research, in which the provision of tissue is phrased as a 'donation' or 'gift', and tissue providers are referred to as 'donors'. Because of the performative qualities of language, the effect of using 'donation' and 'donor' shapes a professional culture in which biobank participants are perceived as passive providers of tissue free from further considerations or entitlements. This hampers the kind of participatory approaches to governance that are deemed necessary to adequately address the ethical challenges currently faced in human tissue research. Rather than reinforcing this idea through language, we need to pave the way for the kind of participatory approaches to governance that are being extensively argued for by starting with the appropriate terminology. [ABSTRACT FROM AUTHOR]

Background: The role of global initiatives in catalyzing change within national contexts is complex and less understood. Addressing adolescent sexual and reproductive health in Kenya requires concerted efforts of both state and non-state actors and more importantly, a supportive environment. This paper deconstructs the moral and social narratives of adolescents' and young people's sexual and reproductive health (AYSRH) in Kenya as driven by the powerful discourse and ideologies pre- and within the Millennium Development Goal (MDG) era. Methods: Literature was systematically searched in PubMed and Medline with policy documents obtained from government agencies from the pre-MDG period (2000 and earlier) and within the MDG period (2001–2015). Literature with a substantial focus on SRH were eligible if they captured the different facets of ASRH in Kenya and sub-Saharan Africa (SSA). The results were reviewed and synthesized to disentangle the moral and social narratives of AYSRH in Kenya with an MDG lens. Results: The evolution of AYSRH policies and programmes in Kenya was gradual and largely shaped by prevailing development threats and moral and social narratives. Pre-MDG period was dominated by issue-based policies of population growth and high fertility rates, with a focus on married population with strong cultural and religious barriers to AYSRH; early to mid-MDG was mainly influenced by the threat of HIV/AIDS, culminating in the first Adolescent Reproductive Health and Development Policy in 2003. However, the policies and subsequent programmes focused on abstinence only and medical narratives, with persistent religious and cultural opposition to AYSRH. Late-MDG saw more progressive policies (these are policies that refer to those that tends towards acceptance of liberal social reforms and which sometimes are contrary to entrenched social norms, beliefs and practices), high government commitment and a refocus on SRH issues due to sustained early childbearing, culminating in the revised Adolescent Sexual and Reproductive Health Policy of 2015. Conclusion: Debates in the translation of global goals and commitments to policy and practice at country level need to account for national level realities in AYSRH reforms. The findings contribute to critical evidence for strategic policy and programming approaches for AYSRH in Kenya and in SSA and for the realization of their rights within the context of sustainable development goals. [ABSTRACT FROM AUTHOR]

Background: The burgeoning field of biomedical research involving the mixture of human and animal materials has attracted significant ethical controversy. Due to the many dimensions of potential ethical conflict involved in this type of research, and the wide variety of research projects under discussion, it is difficult to obtain an overview of the ethical debate. This paper attempts to remedy this by providing a systematic review of ethical reasons in academic publications on human-animal chimera research.Methods: We conducted a systematic review of the ethical literature concerning human-animal chimeras based on the research question: "What ethical reasons have been given for or against conducting human-animal chimera research, and how have these reasons been treated in the ongoing debate?" Our search extends until the end of the year 2017, including MEDLINE, Embase, PhilPapers and EthxWeb databases, restricted to peer-reviewed journal publications in English. Papers containing ethical reasons were analyzed, and the reasons were coded according to whether they were endorsed, mentioned or rejected.Results: Four hundred thirty-one articles were retrieved by our search, and 88 were ultimately included and analyzed. Within these articles, we found 464 passages containing reasons for and against conducting human-animal chimera research. We classified these reasons into five categories and, within these, identified 12 broad and 31 narrow reason types. 15% of the retrieved passages contained reasons in favor of conducting chimera research (Category P), while 85% of the passages contained reasons against it. The reasons against conducting chimera research fell into four further categories: reasons concerning the creation of a chimera (Category A), its treatment (Category B), reasons referring to metaphysical or social issues resulting from its existence (Category C) and to potential downstream effects of chimera research (Category D). A significant proportion of identified passages (46%) fell under Category C.Conclusions: We hope that our results, in revealing the conceptual and argumentative structure of the debate and highlighting some its most notable tendencies and prominent positions, will facilitate continued discussion and provide a basis for the development of relevant policy and legislation. [ABSTRACT FROM AUTHOR]

Background: Communities' engagement in priority-setting is a key means for setting research topics and questions of relevance and benefit to them. However, without attention to dynamics of power and diversity, their engagement can be tokenistic. So far, there remains limited ethical guidance on how to share power with communities, particularly those considered disadvantaged and marginalised, in global health research priority-setting. This paper generates a comprehensive, empirically-based "ethical toolkit" to provide such guidance, further strengthening a previously proposed checklist version of the toolkit. The toolkit places community engagement and power-sharing at the heart of priority-setting for global health research projects.Methods: A two part method was used to generate a revised toolkit. Part one was conceptual, consisting of novel analysis of empirical data (previously collected as part of the same overall project) to identify additional concepts relevant to power-sharing between researchers and communities in global health research priority-setting. Part two was empirical, seeking feedback on the initial checklist version of the toolkit in interviews with researchers, ethicists, community engagement practitioners, and community organisation staff.Results: The conceptual process identified two additional components of engagement and six additional features that affect who defines, who participates, and who is heard in research priority-setting. New ethical considerations related to sharing power in global health research priority-setting are articulated in relation to those components and features. Interviewees provided suggestions for revising the toolkit's content and language. The implications of these suggestions and the analytic process for the toolkit are described.Conclusions: The resultant toolkit is a reflective project planning aid for researchers and their community partners to employ before priority-setting is undertaken for global health research projects. It consists of three worksheets (to be completed collectively) and a companion document detailing how to use them. It is more comprehensive than the initial toolkit, as worksheet questions for discussion cover all phases of priority-setting. [ABSTRACT FROM AUTHOR]