This paper aims to provide a brief overview of the ethical challenges facing researchers engaging with web archival materials and demonstrates a framework and method for conducting research with historical web data created by young people.,This paper’s methodology is informed by the conceptual framing of data materials in research on the “right to be forgotten” (Crossen-White, 2015; GDPR, 2018; Tsesis, 2014), data afterlives (Agostinho, 2019; Stevenson and Gehl, 2019; Sutherland, 2017), indigenous data sovereignty and governance (...) (Wemigwans, 2018) and feminist ethics of care (Cifor et al., 2019; Cowan, 2020; Franzke et al., 2020; Luka and Millette, 2018). It demonstrates a new method called an archive promenade, which builds on the walkthrough and scroll-back methods (Light et al., 2018; Robards and Lincoln, 2017).,The archive promenades demonstrate how individual attachments to digital traces vary and are often unpredictable, which necessitates further steps to ensure that privacy and data sovereignty are maintained through research with web archives.,This paper demonstrates how the archive promenade methodological intervention can lead to better practices of care with sensitive web materials and brings together previous work on ethical fabrications (Markham, 2012), speculation (Luka and Millette, 2018) and thick context (Marzullo et al., 2018), to yield new insights for research on the experiences of growing up online. (shrink)

What could a social-justice oriented, feminist data studies look like? The current datalogical turn foregrounds the digital datafication of everyday life, increasing algorithmic processing and data as an emergent regime of power/knowledge. Scholars celebrate the politics of big data knowledge production for its omnipotent objectivity or dismiss it outright as data fundamentalism that may lead to methodological genocide. In this feminist and postcolonial intervention into gender-, race- and geography-blind ‘big data’ ideologies, I call (...) for ethical, anti-oppressive digital data-driven research in the social sciences and humanities. I argue that a reflexive data scholarship can emerge from the reintegration of feminist and postcolonial science studies and ethics of care ideals. Although it is not a panacea for all ails of data mining, I offer a road map for an alternative data-analysis practice that is more power-sensitive and accountable. By incorporating a people-centric and context-aware perspective that acknowledges relationships of dependency, reflects on temptations, and scrutinises benefits and harm, an ‘asymmetrically reciprocal’ (Young, 1997) research encounter may be achieved. I bring this perspective to bear on experiences of a two-year research project with eighty-four young Londoners on digital identities and living in a highly diverse city. I align awareness of uneven relations of power and knowledge with the messy relation of dependency between human and non-human actors in data analysis. This framework productively recognises that digital data cannot be expected to speak for itself, that data do not emerge from a vacuum, and that isolated data patterns cannot be the end-goal of a situated and reflexive research endeavor. Data-driven research, in turn, shows the urgency for renewed feminist ethical reflection on how digital mediation impacts upon responsibility, intersectional power relations, human subjectivity and the autonomy of research participants over their own data. (shrink)

Background: Physical restraint is among the commonly used methods for ensuring patient safety in intensive care units. However, nurses usually experience ethical dilemmas over using physical restraint because they need to weigh patient autonomy against patient safety. Aim: The aim of this study was to explore factors behind ethical dilemmas for critical care nurses over using physical restraint for patients. Design: This is a qualitative study using conventional content analysis approach, as suggested by Graneheim and Lundman, to analyze the (...) class='Hi'>data. Methods: Seventeen critical care nurses were purposefully recruited from the four intensive care units in Tehran, Iran. Data were collected through in-depth semi-structured interviews and were concurrently analyzed through conventional content analysis as suggested by Graneheim and Lundman. Ethical consideration: This study was approved by the Ethics Committee of Iran University of Medical Sciences, Tehran, Iran with the code: IR.IUMS.REC.1397.795. Before interviews, participants were provided with explanations about the aim of the study, the confidentiality of the data, their freedom to participate, and the right to withdraw the study, and their free access to the study findings. Finally, their consents were obtained, and interviews were started. Results: Factors behind ethical dilemmas for critical care nurses over using physical restraint were categorized into three main categories, namely the outcomes of using physical restraint, the outcomes of not using physical restraint, and emotional distress for nurses. The outcomes of using physical restraint were categorized into the three subcategories of ensuring patient safety, physical damage to patients, and mental damage to the patient. The outcomes of not using physical restraint fell into two subcategories, namely the risks associated with not using physical restraint and legal problems for nurses. Finally, the two subcategories of the emotional distress for nurses main category were nurses’ negative feelings about restraint use and uncertainty over the decision on physical restraint use. Conclusion: Decision-making for restraint use is often associated with ethical dilemmas, because nurses need to weight the outcomes of its use against the outcomes of not using it and also consider patient safety and autonomy. Health authorities are recommended to develop clear evidence-based guidelines for restraint use and develop and implement educational and counseling programs for nurses on the principles of ethical nursing practice, patient rights, physical restraint guidelines and protocols, and management of emotional, ethical, and legal problems associated with physical restraint use. (shrink)

This article describes the nature of ethical dilemmas in perioperative nursing practice. Using the Critical Incident Technique, common ethical dilemmas experienced by periop erative nurses are explored. The aim of the study was to elicit the ethical dilemmas that arise in perioperative nurses' practice. The study has a descriptive design and the data are critical incidents described by 48 anaesthetic nurses and 76 operating theatre nurses. An analysis of the critical incidents gave four domains of ethical dilemmas: those arising (...) as value conflicts in the intraoperative phase of surgery; those emanating from the patient's right of self- determination ; those arising in caring for patients; and those resulting from the alloca tion of scarce resources and the demands of increased effectiveness. (shrink)

Background The rapidly growing quantity of health data presents researchers with ample opportunity for innovation. At the same time, exploitation of the value of Big Data poses various ethical challenges that must be addressed in order to fulfil the requirements of responsible research and innovation (Gerke et al. 2020 ; Howe III and Elenberg 2020 ). Data sovereignty and its principles of self-determination and informed consent are central goals in this endeavor. However, their consistent implementation has (...) enormous consequences for the collection and processing of data in practice, especially given the complexity and growth of data in healthcare, which implies that artificial intelligence (AI) will increasingly be applied in the field due to its potential to unlock relevant, but previously hidden, information from the growing number of data (Jiang et al. 2017 ). Consequently, there is a need for ethically sound guidelines to help determine how data sovereignty and informed consent can be implemented in clinical research. Methods Using the method of a narrative literature review combined with a design thinking approach, this paper aims to contribute to the literature by answering the following research question: What are the practical requirements for the thorough implementation of data sovereignty and informed consent in healthcare? Results We show that privacy-preserving technologies, human-centered usability and interaction design, explainable and trustworthy AI, user acceptance and trust, patient involvement, and effective legislation are key requirements for data sovereignty and self-determination in clinical research. We outline the implications for the development of IT solutions in the German healthcare system. (shrink)

Background The phenomenon of ‘moral distress’ has continued to be a popular topic for nursing research. However, much of the scholarship has lacked conceptual clarity, and there is debate about what it means to experience moral distress. Moral distress remains an obscure concept to many clinical nurses, especially those outside of North America, and there is a lack of empirical research regarding its impact on nurses in the United Kingdom and its relevance to clinical practice. Research aim To explore the (...) concept of moral distress in nursing both empirically and conceptually. Methodology Feminist interpretive phenomenology was used to explore and analyse the experiences of critical care nurses at two acute care trauma hospitals in the United Kingdom. Empirical data were analysed using Van Manen’s six steps for data analysis. Ethical considerations The study was approved locally by the university ethics review committee and nationally by the Health Research Authority in the United Kingdom. Findings The empirical findings suggest that psychological distress can occur in response to a variety of moral events. The moral events identified as causing psychological distress in the participants’ narratives were moral tension, moral uncertainty, moral constraint, moral conflict and moral dilemmas. Discussion We suggest a new definition of moral distress which captures this broader range of moral events as legitimate causes of distress. We also suggest that moral distress can be sub-categroised according to the source of distress, for example, ‘moral-uncertainty distress’. We argue that this could aid in the development of interventions which attempt to address and mitigate moral distress. Conclusion The empirical findings support the notion that narrow conceptions of moral distress fail to capture the real-life experiences of this group of critical care nurses. If these experiences resonate with other nurses and healthcare professionals, then it is likely that the definition needs to be broadened to recognise these experiences as ‘moral distress’. (shrink)

Background and aim Child and adolescent forensic psychiatry is fraught with complex medical, legal, and social tensions. The ethical challenges this entails for inhospital treatment have hardly been investigated, and specific support for health care professionals is lacking. This study identifies ethical issues and problems in this area and develops a tool for early detection and intervention of ethical problems in clinical practice. Methods A systematic literature search and an observational study in adolescent forensics at the University Psychiatric Clinics Basel (...) are conducted. The observation data are evaluated using a qualitative content analysis. The instrument is developed based on the results using a new method. Results In the literature search, 14 valid publications were identified that mainly address ethical conflicts in legal psychiatry, such as professional role conflicts, ethical problems in diagnostics and assessment, or confidentiality issues. Empirical or empirical–normative studies are missing. In the observational study, 24 ethical issues and specific conflicts were identified. Ethical questions about moral competencies of the adolescents, the quality of treatment, the handling of rules and sanctions, and freedom and privacy are particularly common. The Instrument for Early Detection and Intervention of Ethical Problems (FIEP) contains the four core elements risk factors, indicators, intervention planning and decision-making. Conclusions Inhospital treatment in forensic child and adolescent psychiatry reveals a broad spectrum of ethical issues with specific ethical problems, which are hardly investigated in literature so far. The FIEP instrument developed here supports health care practitioners in recognizing ethical problems at an early stage and addressing them efficiently. (shrink)

In this contribution, we will discuss the opportunities and challenges arising from memory institutions' need to redefine their archival strategies for contemporary collecting in a world of big data. We will reflect on this topic by critically examining the case study of the UK Web Archive, which is made up of the six UK Legal Deposit Libraries: the British Library, National Library of Scotland, National Library of Wales, Bodleian Libraries Oxford, Cambridge University Library and Trinity College Dublin. The UK (...) Web Archive aims to archive, preserve and give access to the UK web space. This is achieved through an annual domain crawl, first undertaken in 2013, in addition to more frequent crawls of key websites and specially curated collections which date back as far as 2005. These collections reflect important aspects of British culture and events that shape society. This commentary will explore a number of questions including: what heritage is captured and what heritage is instead neglected by the UK Web archive? What heritage is created in the form of new data and what are its properties? What are the ethical issues that memory institutions face when developing these web archiving practices? What transformations are required to overcome such challenges and what institutional futures can we envisage? (shrink)

Background Frontline nurses who care for patients with COVID-19 work in stressful environments, and many inevitably struggle with unanticipated ethical issues. Little is known about the unique, ethically sensitive issues that nurses faced when caring for patients with COVID-19. Aim To better understand how frontline nurses who care for patients with COVID-19 experience ethical issues towards others and themselves. Methods Systematic review of qualitative evidence carried out according to the Preferred Reporting Items for Systematic reviews and Meta-analyses on ethical literature (...) (PRISMA-Ethics). The electronic databases PubMed, Embase, Cinahl, Web of Science, Philosopher's Index, and Scopus were queried to identify candidate articles. Articles appearing from March 1, 2020 to December 31, 2022 were considered if they met the following inclusion criteria: (1) Published qualitative and mixed method studies and (2) ethical issues experienced by nurses caring for patients with COVID-19. We appraised the quality of included studies, and data analysis was guided by QUAGOL principles. Findings Twenty-six studies meeting our inclusion criteria for how nurses experience ethical issues were characterised by two key themes: (1) the moral character of nurses as a willingness to respond to the vulnerability of human beings and (2) ethical issues nurses acted as barriers sometimes, impeding them from responding to requests of vulnerable human beings for dignified care. Conclusion Our review provides a deeper understanding of nurses’ experiences of ethically sensitive issues, while also highlighting the critical need for adjustments to be made at organisational and societal levels. Ethical issues that emerged in situations where organisational and situational constraints impeded nurses' ethical responses to patients’ appeals suggests that early practical support should be made available to resolve ethical issues recognised by nurses. Such support contributes to protecting and promoting not only the dignity of patients with COVID-19 but also of fellow humans in need during crisis. (shrink)

Aldo Leopold’s A Sand County Almanac emphasizes values of receptivity and perceptivity that appear to be mutually reinforcing, critical to an ecological conscience, and cultivatable through concrete and embodied experience. His priorities bear striking similarities to elements of the ethics of care elaborated by feminist philosophers, especially Nel Noddings, who notably recommended receptivity, direct and personal experience, and even shared Leopold’s attentiveness to joy and play as sources of moral motivation. These commonalities are so fundamental that ecofeminists can and (...) should see Leopold as a philosophical ally. The three ecofeminist scholars who have devoted the most concerted attention to Leopold’s work argue that his Land Ethic is not, and does not provide a basis for, an ecofeminist ethic. I dispute the main criticisms of these scholars, and conclude that ecofeminists should attend more often to Leopold’s work, which extends possibilities for excellent praxis. (shrink)

Several films, includingThree Identical Strangers, examined ethical problems in an experiment that involved identical siblings who were adopted as infants and separated into different families to examine the effects of nature versus nurture. The study was primarily designed and directed by Dr Peter Neubauer. The experiment, conducted in the 1960’s through 1980’s, serves as an important cautionary case study, raising several critical and ongoing ethical issues faced by researchers, universities and archives today. The organisation coordinating the study donated the research (...) records to Yale University under the condition that they remain sealed until 2065, and has impeded study participants’ full access to research material. This case raises questions of what investigators, their descendants, research ethics committees or institutional review boards (IRBs), universities and archives should do with study records when researchers retire or die—whether universities should accept researchers’ donations of archival records that may contain patient or participant data, and if so, under what conditions. This study also poses crucial issues for IRBs—for example, whether researchers themselves or their designates should control all access to study records, particularly if controversy or lawsuits ensue. These questions will become increasingly crucial since the amount of research has burgeoned over recent decades, and investigators, on retirement or death, may want to donate their archives to universities. This experiment thus highlights ethical questions to which researchers, IRBs, universities, healthcare institutions, archivists and libraries should attend. (shrink)

Background Ethical conflict is a problem with negative consequences, which can compromise the quality and ethical standards of the nursing profession and it is a source of stress for health care practitioners’, especially for nurses. Objectives The main aim of this study was to analyze Spanish critical care nurses’ level of exposure to ethical conflict and its association with sociodemographic, occupational, and COVID-19–related variables. Research Design, Participants, and Research context: This was a quantitative cross-sectional descriptive study conducted among 117 nurses (...) working in critical care units. Data collection tools were sociodemographic, occupational, and COVID-19–related questionnaires and previously validated Spanish version of Ethical Conflict in Nursing Questionnaire-Critical Care Version. Ethical Considerations We obtained permission from the Ethics Committee and participants' informed consent. Findings Data indicates a moderate level of exposure to ethical conflicts. The most frequent ethical conflicts were related to situations about "treatment and clinical procedures." The most intensity of ethical conflicts was related to situations about "treatment and clinical procedures" and "dynamics of the service and working environment." No statistical significance was identified between the socio-demographic variables and level of exposure to ethical conflicts. However, for critical care nurses working in ICU, nurses with perceived worked stress had a higher level of exposure to ethical conflicts. Likewise, critical care nurses whose family/friends were infected with COVID-19 had a higher level of exposure. Conclusions Critical care nurses experience a moderate level of exposure to ethical conflicts which is consistent with the results of previous studies. A deeper understanding of ethical conflicts in conflictive situations allows recognition of the situations that occur in everyday clinical practice, identification of the ethical conflicts, and facilitation of the nurses working in the challenging clinical situation. (shrink)

In its ethics guidelines, the Association of Internet Researchers advocates a bottom-up, case-based approach to research ethics, one that emphasizes that ethical judgement must be based on a sensible examination of the unique object and circumstances of a study, its research questions, the data involved, and the expected analysis and reporting of results, along with the possible ethical dilemmas arising from the case. This article clarifies and illustrates the mind-set and process of such a bottom-up approach to internet research (...) ethics. Two ethics concepts to think with, namely ‘the distance principle’, and the notion of ‘perceived privacy’, are introduced and applied in a concrete empirical internet study, in which web archives based on personal communications on social media formed the main body of data. The empirical case example serves to highlight the unique challenges of internet research ethics, in light of the blurring boundaries between text and person, and between private and public on the internet, with profound implications and challenges for the definition of human subjects, privacy, and so on. (shrink)

This article investigates dilemmas in the archiving and sharing of qualitative data in educational research, critically engaging with practices and debates from across the social sciences. Ethical, epistemological and methodological challenges are examined in reference to open access agendas, the politics of knowledge production, and transformations in research practices in the era of data management. We first consider practical and interpretive decisions in archiving qualitative data, then map current policy and regulatory frameworks governing research data management, (...) taking Australia as a case-study. We argue that governance and protocols for data sharing have not attended sufficiently to the distinctive ethical and methodological dimensions and knowledge claims of qualitative research. Instead, approaches associated with quantitative data are extrapolated in ways which construct an imaginary of decontextualised data, abstracted from the conditions of its production. We further argue for more critical attention to the double-edged affordances and ambivalent effects of data sharing and openness and to how data archives are imagined, constructed and curated. This includes greater acknowledgement of the affective and temporal dynamics involved in data archiving, understanding them as practices of (re)invention that also curate ‘archives for the future’ and help to foster an historicising imaginary in educational research. (shrink)

Background Unit-based critical care nurse leaders (UBCCNL) play a role in exemplifying ethical leadership, addressing moral distress, and mitigating contributing factors to moral distress on their units. Despite several studies examining the experience of moral distress by bedside nurses, knowledge is limited regarding the UBCCNL’s experience. Research aim The aim of this study was to gain a deeper understanding of the lived experiences of Alabama UBCCNLs regarding how they experience, cope with, and address moral distress. Research design A qualitative descriptive (...) design and inductive thematic analysis guided the investigation. A screening and demographics questionnaire and a semi-structured interview protocol were the tools of data collection. Participant and research context Data were collected from 10 UBCCNLs from seven hospitals across the state of Alabama from February to July 2023. Ethical considerations This study was approved by the Institutional Review Board at the University of Alabama in Huntsville. Informed consent was obtained from participants prior to data collection. Findings UBCCNLs experience moral distress frequently due to a variety of systemic and organizational barriers. Feelings of powerlessness tended to precipitate moral distress among UBCCNLs. Despite moral distress resulting in increased advocacy and empathy, UBCCNLs may experience a variety of negative responses resulting from moral distress. UBCCNLs may utilize internal and external mechanisms to cope with and address moral distress. Conclusions The UBCCNL’s experience of moral distress is not dissimilar from bedside staff; albeit, moral distress does occur as a result of the responsibilities of leadership and the associated systemic barriers that UBCCNLs are privier to. When organizations allocate resources for addressing moral distress, they should be convenient to leaders and staff. The UBCCNL perspective should be considered in the development of future moral distress measurement tools and interventions. Future research exploring the relationship between empathy and moral distress among nurse leaders is needed. (shrink)

Background Intensive and critical care nurses need to demonstrate ethical sensitivity especially in recognizing and dealing with ethical dilemmas particularly as they often care for patients living with life-threatening conditions. Theories suggest that there is a convergence between nurses’ empathy and ethical sensitivity. Evidence in the literature indicates that nurses’ emotional, demographic, and work characteristics are associated with their level of empathy and ethical sensitivity. Aim To investigate the relationship between nurses’ empathy and ethical sensitivity, considering their emotional states (depression, (...) anxiety, and stress), demographic and work characteristics, and test an empirical model describing potential predictors of empathy (as a mediator) and ethical sensitivity using path analysis. Research design Using a cross-sectional design, the philosophical theory of care ethics and empathy was extended and adopted as a conceptual framework for this study and tested by path analysis. Participants and research context Data were collected from 347 intensive care nurses recruited by ten educational-medical hospitals in Iran using a questionnaire between February and March 2021. Ethical considerations The study was reviewed by the Ethical Advisory Board in Iran and conducted according to the Declaration of Helsinki. Findings Study participants demonstrated a mild level of stress, anxiety, and depression, alongside a relatively high level of empathy and ethical sensitivity. Nurses with good socioeconomic status had higher empathetic behavior with patients than those with weak status. Nurses aged over 40 who had received ethics training and had higher work experience were associated with higher ethical sensitivity compared to nurses under 20 years of age. Empathy directly affected ethical sensitivity; however, anxiety had an indirect effect on ethical sensitivity through empathy. Among demographic factors, age had a positive direct effect on ethical sensitivity. Conclusions Less anxiety and a high level of empathy contribute to higher levels of ethical sensitivity among intensive and critical care nurses. (shrink)

Tuberculosis (TB) is a potentially fatal infectious disease that, in Aotearoa New Zealand (NZ), inequitably affects Asian, Pacific, Middle Eastern, Latin American, and African (MELAA), and Māori people. Medical research involving genome sequencing of TB samples enables more nuanced understanding of disease strains and their transmission. This could inform highly specific health interventions. However, the collection and management of TB isolate samples for research are currently informed by monocultural biomedical models often lacking key ethical considerations. Drawing on a qualitative kaupapa (...) Māori–consistent study, this paper reports on preliminary discussions with groups of Māori, Pacific, and Afghan people in NZ, whose communities have been harmed by TB and TB stigma. Participants’ discussions highlight key concerns and meanings that ought to inform the development of guidelines and a more robust consultative process for the governance of how TB isolate samples are collected and used both retrospectively and in future research. We argue for ethical processes to be culturally nuanced and community-generated, flexible and meaningful, and situated in relation to the physical and symbolic effects of TB. We discuss the significance of Indigenous data sovereignty, rights, and kāwanatanga (governorship) in shaping a multicultural data sovereignty model. (shrink)

Background Intensive care nurses frequently encounter ethical issues with potentially severe consequences for nurses, patients, and next of kin. Therefore, ethical issues in intensive care units (ICU) should be recognized and managed. Research objectives To analyze ethical issues reported by intensive care nurses and how reported issues were managed within the organization using register data from the HaiPro critical incident reporting system (CIRS), and to explore the suitability of this system for reporting and managing ethical issues. Research design This (...) was a retrospective descriptive register study. CIRS reports on ethical issues in adult ICUs ( n = 12) in one hospital district in Finland over 25 months (2019–2021) were analyzed through inductive content analysis and descriptive quantification. The CIRS’s suitability for reporting and managing ethical issues was evaluated through a strengths, weaknesses, opportunities, and threats (SWOT) analysis. Ethical considerations The study was approved by the University Ethics Committee, and permission to conduct the research was granted before data collection within the organization. Results CIRS reports on ethical issues ( n = 35) made by nurses were found in seven of the 12 ICUs. The CIRS managers of these units managed these reports. The ethical issues described by the nurses were divided into four main categories: nature, situational information, consequences, and contributing factors. Management of reported ethical issues was divided into three main categories: preventive actions proposed by nurses, proposals for actions by CIRS managers, and actions taken by CIRS managers. Conclusions Systematic register data broadly describe ethical issues and their management, indicating that the CIRS could be suitable for reporting and managing ethical issues, thereby enabling the monitoring and development of ethical quality at the unit and organizational levels. (shrink)

The European Biomedical Ethics Practitioner Education Project (EBEPE), funded by the BIOMED programme of the European Commission, is a five-nation partnership to produce open learning materials for healthcare ethics education. Papers and case studies from a series of twelve conferences throughout the European Union, reflecting the ‘burning issues’ in the participants' healthcare systems, have been collected by a team based at Imperial College, London, where they are now being edited into a series of seven activity-based workbooks for individual or group (...) study. These draft workbooks are now being read by a network of critical readers across Europe, whose comments will be incorporated into the final versions of the workbooks. The result will be the first European-wide and Europe-centred resource for teaching students, practitioners, and members of ethics committees. Topics covered include: • Resource allocation and rationing • The rights of children and young people • Long-term care of the elderly • Mental health and mental illness • Autonomy and patient choice • Decisions at the end of life • A study guide to using the workbooks The collaborative nature of the project has highlighted differentiated national approaches in medical ethics. Against the British and Dutch rights-orientated approach have emerged two other alternative models: the Nordic preference for administrative resolution of entitlement disputes, and the southern European emphasis on deontological codes. A genuinely European reconstruction of autonomy and rights, using hermeneutic, feminist and narrative approaches to counterbalance individualistic models, is emerging across the workbooks. The programme has also uncovered national differences in how ethics should be taught, with the workbooks' style being an experiential approach. Thus the EBEPE project is developing new models in both substantive and pedagogic senses, about both what should be taught and how it should be presented. (shrink)

Because of the importance of data-sharing for the economy, improved products and services, and to benefit society, the European Union has proposed developing a Common European Data Space (CEDS). The goal is to create a single European data market through 14 domain-specific data spaces (e.g., agriculture, or the Common European Agricultural Data Space (CEADS)). One of the central tenets of the CEDS is to ensure that those who share data can maintain control over who (...) has access to, use of, and ability to share it (or ‘data sovereignty’). Data sovereignty is an umbrella concept with many different values comprising its implementation. Therefore, to successfully implement data sovereignty in the CEADS (and all CEDS for that matter), it is important to identify what values are important for stakeholders.This paper examines the CEADS to identify the most critical values for potential stakeholders of this data space. We implement a six-phase value-sensitive design methodology called ‘value mapping’ by interviewing stakeholders from an incipient Spanish data-sharing initiative (potentially representing over 1 million farmers) and conducting a workshop with 42 international stakeholders at an agri-tech summit. Our findings demonstrate the different values that are important for stakeholders of an agricultural data space: farmers (privacy, control, and trust); farm advisors (human welfare and autonomy); farmer associations (trust and human welfare); technology providers and intermediaries (autonomy and human welfare); public and regulatory bodies (autonomy); and society (justice). Furthermore, we describe different interdisciplinary steps to ensure and protect these values to ensure sovereignty-by-design in the CEADS. (shrink)

Ethics, Aging and Society...is the first major work in ten years to critically address issues and methodologies in aging and ethics...This well-organized volume begins theoretically and offers new ways of thinking about ethics that can handle the complexities and realities of aging in particular social contexts."--Choice This new research-based book, by experts in the field of ethics, is excellent and much-needed...I challenge you to consider reading this book and seeing all the ways in which you might be forced to rethink (...) things that most of us take as given for ethics and aging. I know you will not be disappointed and I guarantee you will end up thinking long and hard about personal and professional decisions you may have made as well as your assumptions about aging in America."--CFLE Network Newsletter This is a book that should be required reading for all involved in the ethical provision of services to the aging on any level, as well as for policy makers and administrators in positions of influence over the lives of older patients."--PsycCRITIQUES...the authors' application of feminist ethics to frail elders rings true to both my clinical experience working with frail elders, and my research experience trying to understand their quality of life concerns...there were true gems of ideas [in this book] that illuminated the limitations of the dominant paradigm of autonomy in bioethics. [The authors] make a compelling critique of end-of-life care."--GeriPal: A Geriatrics and Palliative Care Blog This book presents second generation issues in ethics, aging, and society by presenting critical outcomes that arise when ethics is applied to the practical concerns that occur in day-to-day elder care. The first volume in over 10 years to address ethics and gerontology, it is unparalleled in its comprehensiveness and integration of well-developed philosophical arguments with empirical research, humanistic scholarship, and insights gained from practical experience. This book challenges the tried and true approaches to ethical issues in aging and opens avenues for creative problem-solving. The authors' diverse backgrounds bring the advantages of both interdisciplinary scholarship and practical experience to this comprehensive textbook. It is an essential resource for those interested in, and working with, older people, from upper-level undergraduate students and graduate-division students, to gerontology practitioners in training. Key Features: Presents the first major work in over 10 years to integrate the disciplines of ethics and aging Includes case studies derived from day-to-day practice Addresses individual/clinical ethics in health and long-term care and ethical issues raised by public policy, cultural norms and social attitudes Examines such critical issues as Alzheimer's disease, long-term care, ageism, public policy, anti-aging medicine, elder abuse, and natural disasters Explores new directions in ethical and social philosophy as they pertain to gerontology and care. (shrink)

A critical examination of Carol Gilligan's study of “psychological theory and women's development,” this essay begins by exploring her concerns about malebiased developmental theorizing. I consider in detail Gilligan's criticisms of Sigmund Freud and her own empirical studies of moral development, as they relate to the work of L. Kohlberg. After defending Freud to some degree, I propose various alternative interpretations of her data-interviews with males and females about hypothetical ethical dilemmas and with females about actual abortion decisions. I (...) contend that Gilligan is too willing to concede the adequacy of Kohlberg's categories for fathoming the moral reasoning of males and that she may, in consequence, exaggerate differences between males and females. Noting the ironic similarities between Gilligan's claims and Schopenhauer's misogyny, I suggest that there may be something undesirably self-limiting about the ‘different’ course of development she sketches. To move toward a morally preferable, feminism-compatible version of an “ethic of care,” I recommend that it be extended — by the imagination — beyond the ‘here and now’ and that it not be restricted to existing webs of personal relationships. (shrink)

Introduction: Ethical conflict is a phenomenon that has been under study over the last three decades, especially the types moral dilemma and moral distress in the field of nursing care. However, ethical problems and their idiosyncrasies need to be further explored. Aim: The objectives of this study were, first, to obtain a transcultural Portuguese-language adaptation and validation of the Ethical Conflict Nursing Questionnaire–Critical Care Version and, second, to analyse Portuguese critical care nurses’ level of exposure to ethical conflict and its (...) characteristics. Methods: A cross-cultural validation and descriptive, prospective and correlational study. The sample was made for 184 critical care nurses in 2016. Ethical Considerations: The study was authorised by Bioethics Commission of the University of Barcelona, the Associaçâo de Apoio ao Serviço de Cuidados Intensivos do Centro Hospitalar do Porto and the Sociedade Portuguesa de Enfermagem de Saúde Mental. Findings: The Portuguese version of the Ethical Conflict Nursing Questionnaire–Critical Care Version was a valid and reliable instrument to measure exposure to conflict. Moral outrage was the most common type of conflict. The most problematic situations were the ineffectiveness of analgesic treatments, the administration of treatments considered futile and the mismanagement of resources. (shrink)

Critical Data Studies explore the unique cultural, ethical, and critical challenges posed by Big Data. Rather than treat Big Data as only scientifically empirical and therefore largely neutral phenomena, CDS advocates the view that Big Data should be seen as always-already constituted within wider data assemblages. Assemblages is a concept that helps capture the multitude of ways that already-composed data structures inflect and interact with society, its organization and functioning, and the resulting impact on (...) individuals’ daily lives. CDS questions the many assumptions about Big Data that permeate contemporary literature on information and society by locating instances where Big Data may be naively taken to denote objective and transparent informational entities. In this introduction to the Big Data & Society CDS special theme, we briefly describe CDS work, its orientations, and principles. (shrink)

Background: Ethical challenges are common in clinical nursing practice, and an infectious environment could put nurses under ethical challenges more easily, which may cause nurses to submit to negative emotions and psychological pressure, damaging their mental health. Purpose: To examine the ethical challenges encountered by nurses caring for patients with the novel coronavirus pneumonia (COVID-19) and to provide nurses with suggestions and support regarding promotion of their mental health. Research design and method: A qualitative study was carried out using a (...) qualitative content analysis. The participants were 18 nurses who agreed to attend an interview and describe their own experiences of providing care to COVID-19 patients in China. They were purposively sampled, and structured, in-depth interviews were performed. Data were iteratively collected and analyzed from February to March 2020. Ethical considerations: The proposal was approved by the Research Ethics Committee of the Second Hospital of Shandong University, China. Findings: The findings revealed three main themes and 10 categories. The themes were the following: (1) ethical challenges (people with COVID-19, inequality, professional ethics, and job competency); (2) coping styles (active control and planning, seeking support as well as catharsis, and staying focused); and (3) impacts on career (specialized nursing skills, scientific research ability, and management skills). Conclusion: Nurses faced ethical challenges on multiple fronts in caring for COVID-19 patients. The results may help nurses with more safety, ethics, and humanistic care in nursing practice. (shrink)

Applications of artificial intelligence/machine learning in health care are dynamic and rapidly growing. One strategy for anticipating and addressing ethical challenges related to AI/ml for health care is patient and public involvement in the design of those technologies – often referred to as ‘co-design’. Co-design has a diverse intellectual and practical history, however, and has been conceptualized in many different ways. Moreover, AI/ml introduces challenges to co-design that are often underappreciated. Informed by perspectives from critical data studies and critical (...) digital health studies, we review the research literature on involvement in health care, and involvement in design, and examine the extent to which co-design as commonly conceptualized is capable of addressing the range of normative issues raised by AI/ml for health care. We suggest that AI/ml technologies have amplified and modified existing challenges related to patient and public involvement, and created entirely new challenges. We outline three pitfalls associated with co-design for ethical AI/ml for health care and conclude with suggestions for addressing these practical and conceptual challenges. (shrink)

Background This study assesses how pediatric assent is conceptualized and justified within the therapeutic context. Pediatric ethicists generally agree that children should participate in medical care decisions in developmentally appropriate ways. Much attention has been paid to pediatric assent for research participation, but ambiguities persist in how assent is conceptualized and operationalized in the therapeutic context where countervailing considerations such as the child’s best interest and parental permission must also be weighed.Methods Searches were conducted in 11 databases including PubMed, Embase, (...) Cochrane Library, and Web of Science. Articles published between 2010 and 2020 were screened in COVIDENCE for meeting each of four criteria: (1) focusing on pediatric assent, (2) focusing on clinical care, (3) including normative claims, and (4) containing substantive statements about the meaning of pediatric assent. Full texts were abstracted for (1) operational definitions of assent, (2) discussion of the temporal nature of assent, (3) description of the concept of “understanding,” and (4) ethical justifications for soliciting assent. These excerpts were coded and code patterns formed themes presented in the results.Results The final analytic data set contained 29 articles. Analysis yielded three key themes. First, valid assent varies by treatment, population (e.g., younger versus older), and geographic/cultural context. Second, assent represents two distinct longitudinal processes: One involves eliciting preferences over a disease course or care episode; the other focuses on children’s developmental maturation. Third, ethical justifications for assent draw variously on instrumental and intrinsic reasons, but often remain ambiguous.Conclusions There is widespread agreement that assent is morally valuable, but there remain substantial ambiguities or disagreements about its meaning, process, and ethical justification. (shrink)

This article addresses the general ethical issues of accessing online personal data for research purposes. The authors discuss the practical aspects of online research with a specific case study that illustrates the ethical challenges encountered when accessing data from Kooth, an online youth web-counselling service. This paper firstly highlights the relevance of a process-based approach to ethics when accessing highly sensitive data and then discusses the ethical considerations and potential challenges regarding the accessing of public data (...) from Digital Mental Health services. It presents solutions that aim to protect young DMH service users as well as the DMH providers and researchers mining such data. Special consideration is given to service users’ expectations of what their data might be used for, as well as their perceptions of whether the data they post is public, private or open. We provide recommendations for planning and designing online research that includes vulnerable young people as research participants in an ethical manner. We emphasise the distinction between public, private and open data, which is crucial to comprehend the ethical challenges in accessing DMH data. Among our key recommendations, we foreground the need to consider a collaborative approach with the DMH providers while respecting service users’ control over personal data, and we propose the implementation of digital solutions embedded within the platform for explicit opt-out/opt-in recruitment strategies and ‘read more’ options. (shrink)

Background As health education robots may potentially become a significant support force in nursing practice in the future, it is imperative to adhere to the European Union’s concept of “Responsible Research and Innovation” (RRI) and deeply reflect on the ethical risks hidden in the process of intelligent robotic health education. Aim This study explores the perceptions of professional nursing professionals regarding the potential ethical risks associated with the clinical practice of intelligent robotic health education. Research design This study adopts a (...) descriptive phenomenological approach, employing Colaizzi’s seven-step method for data analysis. Participants and research context We conducted semi-structured interviews with 17 nursing professionals from tertiary comprehensive hospitals in China. Ethical considerations This study has been approved by the Ethics Committee of the Second Affiliated Hospital of Nanjing University of Chinese Medicine, Jiangsu Provincial Second Chinese Medicine Hospital. Findings Nursing personnel, adhering to the principles of RRI and the concept of “person-centered” care, have critically reflected on the potential ethical risks inherent in robotic health education. This reflection has primarily identified six themes: (a) threats to human dignity, (b) concerns about patient safety, (c) apprehensions about privacy disclosure, (d) worries about implicit burdens, (e) concerns about responsibility attribution, and (f) expectations for social support. Conclusions This study focuses on health education robots, which are perceived to have minimal ethical risks, and provides rich and detailed insights into the ethical risks associated with robotic health education. Even seemingly safe health education robots elicit significant concerns among professionals regarding their safety and ethics in clinical practice. As we move forward, it is essential to remain attentive to the potential negative impacts of robots and actively address them. (shrink)

Morality, ethics, and the law : an overview of the foundations of contemporary clinical ethical analysis -- Case studies : ethical and legal challenges in the care of the neurologically injured critically ill patient -- Civil law and liability : the law of medical malpractice -- Legal reasoning, legal process, legal proof, and why it is confusing to clinician scientists -- Regulatory law and the clinical practice of the neurosciences -- Digital medicine and the data revolution managing digital distraction (...) and EMR : liability while leveraging opportunities in teleneurology and telecritical care -- Developing and leading a sustainable high reliability high performing unit : theories of quality, teamwork, medical error, and patient safety -- Neurolaw and the integration of neuroscience, ethics, and the law : the new frontiers. (shrink)

Researchers studying at-risk and socially disenfranchised child and adolescent populations are facing ethical dilemmas not previously encountered in the laboratory or the clinic. One such set of ethical challenges involves whether to: (a) share with guardians research derived information regarding participant risk, (b) provide participants with service referrals, or (c) report to local authorities problems uncovered during the course of investigation. The articles assembled for this special section address the complex issues of deciding if, when, and how to report or (...) provide referrals for research participants who are minors (referred to hereafter as minor research participants). This paper focuses on two factors underlying these decisions: the validity of risk estimates and meta-ethical positions on scientific responsibility. It is suggested that, before sharing information about minor research participants investigators should do the following: critically examine the diagnostic validity of developmental measures, include the scope and limitations of information sharing in informed consent procedures, and become familiar with state reporting laws. I discuss the impact of the traditionally accepted act utilitarian meta-ethical position on the investigator-participant relationship, and I recommend consideration of alternative positions as a step toward developing a research ethic of scientific responsibility and care. (shrink)

This article explores how ethics and religion interface in everyday life by drawing on a study examining the negotiation of religious and spiritual plurality in health care. Employing methods of critical ethnography, namely, interviews and participant observation, data were collected from patients, health care providers, administrators and spiritual care providers. The findings revealed the degree to which `lived religion' was intertwined with `lived ethics' for many participants; particularly for people from the Sikh faith. For these participants, religion was woven (...) into everyday life, making distinctions between public and private, secular and sacred spaces improbable. Individual interactions, institutional resource allocation, and social discourses are all embedded in social relationships of power that prevent religion from being a solely personal or private matter. Strategies for the reintegration of religion into nursing ethics are: adjusting professional codes and theories of ethics to reflect the influence of religion; and the contribution of critical perspectives, such as postcolonial feminism, to the understanding of lived ethics. (shrink)

Background Pediatric critical care physician attitudes about withdrawal of ventricular assist devices (VAD) and extracorporeal membrane oxygenation (ECMO) in cases of medical futility are poorly defined. Our aim was to define current attitudes regarding the withdrawal of these devices. Methods IRB-approved, cross-sectional observational survey conducted among pediatric critical care attending physicians and fellow physicians in the United States between 2016 and 2017. Data was collected anonymously and statistically analyzed. Results A total of 158 physicians responded with 67% being attending (...) physicians. Compared to a VAD, a higher percentage had taken care of a patient on ECMO where the device was turned off because care was believed to be futile (99% vs. 84%), including currently (95% vs. 57%). Nearly all reported that it can be ethically permissible to withdraw support from a patient with a VAD and on ECMO (97% vs. 99%), but varied opinions existed as to who should ultimately make this decision if the patient/their family disagrees. More respondents agreed that a patient/their family should agree to withdrawal of VAD or ECMO support prior to initiation if futility is later determined (60% vs. 58%) and that protocols should be created for VAD and ECMO withdrawal (77% vs. 76%). Conclusion Most pediatric critical care physicians felt that it can be ethically permissible to withdraw VAD and ECMO support. Our study indicates that pediatric VAD and ECMO withdrawal protocols are desired, but further investigation is needed to determine how to best design protocols that would incorporate multiple stakeholders. (shrink)

Background: Ethical conflict is a barrier to decision-making process and is a problem derived from ethical responsibilities that nurses assume with care. Intensive care unit nurses are potentially exposed to this phenomenon. A deep study of the phenomenon can help prevent and treat it. Objectives: This study was aimed at determining the frequency, degree, level of exposure, and type of ethical conflict among nurses working in the intensive care units. Research design: This was a descriptive cross-sectional research. Participants and research (...) context: In total, 382 nurses working in the intensive care units in Iranian hospitals were selected using the random sampling method. Data were collected using the Ethical Conflict in Nursing Questionnaire-Critical Care Version (Persian version). Ethical considerations: This study was approved by the Medical Research Ethics Committee. Ethical considerations such as completing the informed consent form, ensuring confidentiality of information, and voluntary participation were observed. Findings: The results showed that the average level of exposure to ethical conflict was 164.39 ± 79.06. The most frequent conflict was related to “using resources despite believing in its futility,” with the frequency of at least once a week or a month (68.6%, n = 262). The most conflictive situation was violation of privacy (76.9%, n = 294). However, the level of exposure to ethical conflict according to the theoretical model followed was the situation of “working with incompetent staff.” The most frequently observed type of conflict was moral dilemma. Conclusion: The moderate level of exposure to ethical conflict was consistent with the results of previous studies. However, the frequency, degree, and type of ethical conflict were different compared to the results of other studies. Recognizing ethical conflict among intensive care unit nurses can be useful as it allows to consolidate those measures that favor low levels of ethical conflict, design appropriate strategies to prevent ethical conflicts, and improve the nursing work environment. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:34 Feminist Studies 47, no. 1. © 2021 by Feminist Studies, Inc. James Bliss Defense, Redemption, Care: Black Feminist and Queer Studies Literary theory continues to be received by some as if it were an alien or antagonistic presence from whose leaden and reductive grasp it is imperative to keep literature protected. It is rare, however, that it is the literary, as such, that is being (...) protected, rather than a certain comfortable accommodation with it—not irreducible strangeness and surprise, but the security of knowing that one’s expectations will be fulfilled and one’s competence as a reader rewarded. The pleasures of accommodation and immediate assimilation are the first that theory asks us to forego—which may do as much to make it seem forbidding and “inhumane” as anything it actually proposes. —Elizabeth W. Bruss1 I. Theory Not for the first time, we find ourselves building new genres. Pursuing new writings. Not for the first time, the theoretical and the literary envelope, eclipse, and rearticulate one another. What’s more, the theoretical has been a mode of artistic practice for so long that every page is a palimpsest, a sedimentation of sedimentations of conceptual frames— swirled, spiraling genealogies. Fluent in invented tongues, in the idioms 1. Elizabeth W. Bruss, Beautiful Theories: The Spectacle of Discourse in Contemporary Criticism (Baltimore, MD: Johns Hopkins University Press, 1982), 483. 35 James Bliss Books Discussed in This Essay Black Feminism Reimagined: After Intersectionality. By Jennifer C. Nash. Durham, NC: Duke University Press, 2019. None Like Us: Blackness, Belonging, Aesthetic Life. By Stephen Best. Durham, NC: Duke University Press, 2018. Sensual Excess: Queer Femininity and Brown Jouissance. By Amber Jamilla Musser. New York: NYU Press, 2018. Queer Times, Black Futures. By Kara Keeling. New York: NYU Press, 2019. of invention, in the fluid looseness of disintegrated discourses, our works turn singular. The monograph as signature. The page promises to freeze the text, the object, the artwork, the lifeworld, the performance, and in that stillness to teach us its movements. New moves, secret passageways, lines of escape and gaps in the walls of institutions that die, dissolve, and ossify around and inside us. And here we are. The permanent apocalypse that racial capitalism has been for most life has reached the quadrangles of the college campus. What are we even doing anymore? In the great and dreadful remaking of higher education, as students face permanent indebtedness as the cost of entry into a world without work, what is the ethical impetus for our researches and the systems within which we publish? What are the ethics of critical cultural studies in a debt mine? By what arithmetic do we benefit the students we teach to “steal from the university ” when the university is so much more adroit at stealing from them (and us)? At the same time that the contours of our professional lives are, apparently, unraveling, we find ourselves in (another) new renaissance in Black studies and Black study. We find ourselves within (another) new moment of textual production around the trio of race/gender/sexuality— that is, around Blackness or around Black feminism. 36 James Bliss Or, Black invention—where the Black female, femme, feminine, and maternal operate as synecdochic figures for a species of poiēsis.2 In the 1980s, Jacques Derrida wryly called California the “state of theory” as a function of its tectonic instability.3 In the 2010s, Blackness became the state of theory as a function of its coincidence of death and life, ending and beginning, absence and excess, apocalypse and invention. Blackness, in this instance, is as material as it is metaphor, a projection of meaning across both the great ephemeral skin and the body as flesh. This piece emerges from a sense of the necessity and the hazards of an intellectual history of a moment during which, to take a suggestive phrase from Jared Sexton, “Blackness is theory itself, anti-blackness the resistance to theory.”4 But already language presents an issue. What is the relationship between Sexton’s “theory” and the “theory” found in the epigraph from Elizabeth Bruss? Or, between Sexton’s “theory” and Lewis R. Gordon’s “theory,” as Sexton borrows from Gordon’s “Theory in... (shrink)

Background: Despite the reported harms and ethical concerns about physical restraint use in the critical care settings, nurses’ intention to apply them is unequal across countries. According to the theory of planned behaviour, eliciting nurses’ beliefs regarding the use of physical restraints would provide additional social information about nurses’ intention to perform this practice. Aim: To explore the salient behavioural, normative and control beliefs underlying the intention of critical care nurses to use physical restraints from the theory of planned behaviour. (...) Research design: A belief elicitation study was conducted. Participants and research context: Twenty-six critical care nurses were purposively sampled across gender, work-shift patterns and professional experience in five intensive care units of three hospitals in Spain. Data were obtained from a nine-item open-ended questionnaire and a focus group. Deductive content analysis was performed. Ethical considerations: Ethical approval was obtained from the hospital ethics committee. Participants were assured their participation was voluntary. Findings: Nurses framed the use of restraints as a way of prioritising patients’ physical safety. They referred to contextual factors as the main reasons to justify their application. Nurses perceived that their decision is approved by other colleagues and the patients’ relatives. Some nurses started advocating against their use, but felt powerless to change this unsafe practice within an unfavourable climate. Control beliefs were linked to patients’ medical condition, availability of alternative solutions, analgo-sedation policies and work organisation. Discussion: Safety arguments based on the surrounding work environment were discussed. Conclusion: Nurses’ behavioural and control beliefs were related. Nurses should be trained in alternatives to physical restraint use. The impact of analgo-sedation protocols, relatives’ involvement, leadership support and intensive care unit restraint policies on physical restraint practices need to be revised. Further research is required to explore why nurses do not act with moral courage to change this harmful practice. (shrink)

Background: Neonatal nurses report a great deal of ethical challenges in their everyday work. Seemingly trivial everyday choices nurses make are no more value-neutral than life-and-death choices. Everyday ethical challenges should also be recognized as ethical dilemmas in clinical practice. Research objective: The purpose of this study is to investigate which types of ethical challenges neonatal nurses experience in their day-to-day care for critically ill newborns. Research design: Data were collected through semi-structured qualitative in-depth interviews. Phenomenological-hermeneutic analysis was applied (...) to interpret the data. Participants and research context: Six nurses from neonatal intensive care units at two Norwegian hospitals were interviewed on-site. Ethical considerations: The study is designed to comply with Ethical Guidelines for Nursing Research in the Nordic Countries and the Helsinki declaration. Findings: Findings suggest that nurses experience a diverse range of everyday ethical challenges related to challenging interactions with parents and colleagues, emotional strain, protecting the vulnerable infant, finding the balance between sensitivity and authority, ensuring continuity of treatment, and miscommunication and professional disagreement. Discussion: A major finding in this study is how different agents involved in caring for the newborn experience their realities differently. When these realities collide, ethical challenges arise. Findings suggest that acting in the best interests of the child becomes more difficult in situations involving many agents with different perceptions of reality. Conclusion: The study presents new aspects which increases knowledge and understanding of the reality of nursing in a neonatal intensive care unit, while also demanding increased research in this field of care. (shrink)

Background: Neonatal nurses report a great deal of ethical challenges in their everyday work. Seemingly trivial everyday choices nurses make are no more value-neutral than life-and-death choices. Everyday ethical challenges should also be recognized as ethical dilemmas in clinical practice. Research objective: The purpose of this study is to investigate which types of ethical challenges neonatal nurses experience in their day-to-day care for critically ill newborns. Research design: Data were collected through semi-structured qualitative in-depth interviews. Phenomenological-hermeneutic analysis was applied (...) to interpret the data. Participants and research context: Six nurses from neonatal intensive care units at two Norwegian hospitals were interviewed on-site. Ethical considerations: The study is designed to comply with Ethical Guidelines for Nursing Research in the Nordic Countries and the Helsinki declaration. Findings: Findings suggest that nurses experience a diverse range of everyday ethical challenges related to challenging interactions with parents and colleagues, emotional strain, protecting the vulnerable infant, finding the balance between sensitivity and authority, ensuring continuity of treatment, and miscommunication and professional disagreement. Discussion: A major finding in this study is how different agents involved in caring for the newborn experience their realities differently. When these realities collide, ethical challenges arise. Findings suggest that acting in the best interests of the child becomes more difficult in situations involving many agents with different perceptions of reality. Conclusion: The study presents new aspects which increases knowledge and understanding of the reality of nursing in a neonatal intensive care unit, while also demanding increased research in this field of care. (shrink)

Background Cardiopulmonary Resuscitation (CPR) is one of the areas in which moral issues are of great significance, especially with respect to the nursing profession, because CPR requires quick decision-making and prompt action and is associated with special complications due to the patients’ unconsciousness. In such circumstances, nurses’ ability in terms of moral sensitivity can be determinative in the success of the procedure. Identifying the components of moral sensitivity in nurses in this context can promote moral awareness and improve moral performance. (...) Objective This study was conducted to explore and identify the experiences of critical care nurses about moral sensitivity components in CPR. Research design and methods This study was implemented with a qualitative approach. Data were collected via 22 in-depth semi-structured interviews held with 20 eligible participants with maximum variation. The data were then analyzed using the grounded theory approach. Participants and research context In total, thirteen clinical nurses, three head nurses, two educational supervisors, and two faculty members from different universities of Iran were interviewed. Ethical considerations This study was conducted with the ethical approval (IR.UMSU.REC.1399.337) of the Ethics Committee of Urmia University of Medical Sciences. Findings Four themes and 12 sub-themes were extracted from the analysis of the data, including “Consciously and compassionate attention to resuscitate the patient,” “Awareness of families’ anxiety,” “Understanding the teamwork and interactive guidance of the CPR process,” and “Compulsory violation of moral principles.” Discussion It is anticipated that this discussion will prompt further debate, raise awareness and help clarify the dimensions of moral sensitivity in unconscious patients especially during CPR, so that it can be more clearly named and defended as a moral authority in CPR. Conclusion identifying the components of moral sensitivity in nurses, facilitates their encounter with moral issues and can improve their moral performance and encourage right decisions. (shrink)

Book synopsis: This volume brings together international scholars working at the intersection of Spinoza studies and critical and feminist philosophy. It is the first book-length study dedicated to the re-reading of Spinoza’s ethical and theologico-political works from a feminist perspective. The twelve outstanding chapters range over the entire field of Spinoza’s writings—metaphysical, political, theological, ethical, and psychological—drawing out the ways in which his philosophy presents a rich resource for the reconceptualization of friendship, sexuality, politics, and ethics in contemporary (...) life. The clear and accessible Introduction offers a historical sketch of Spinoza’s life and intellectual context and indicates how Spinoza’s philosophy might be seen as a rich cultural resource today. Topics treated here include the mind-body problem and its relation to the sex-gender distinction; relational autonomy; the nature of love and friendship; sexuality and normative morality; free will and determinism and their relation to Christian theology; imagination and recognition between the sexes; emotion and the body; and power, imagination, and political sovereignty. The essays engage in a rich and challenging conversation that opens new paths for feminist research. (shrink)

Background: Providing information to patients is an essential aspect of care. The way in which such information is transmitted is also important and is affected by different variables. The perceptions of dishonest nursing staff have not been sufficiently discussed to date. Aim: The purpose is to explore the reasons for dishonesty in transmitting information to patients. Design and Method: In this qualitative content analysis study, data were collected using semi-structured interviews with Twelve Iranian Critical Care Nurses from January 2020 (...) till August 2020. Data were analyzed according to Graneheim and Lundman approach. Ethical consideration: The research protocol was authorized by the Ethics Committee of the Medical Sciences University of Tehran (Register number: 95-04-99-33485). Results: The findings indicated that dishonesty in giving information to the patients has many reasons. Although lying is not compatible with ethical care, working conditions sometimes forced nurses to hide the truth. Discussion and conclusion: Nurses believed honesty was an integral aspect of professional practice, but situational specifics have an effect on whether the truth is told or withheld. Finally, the nurses noticed a big gap between what they want to tell and what they were doing in practice. (shrink)

Background: For the experience of end-of-life care to be ‘good’ many ethical challenges in various relationships have to be resolved. In this article, we focus on challenges in the nurse–next of kin relationship. Little is known about difficulties in this relationship, when the next of kin are seen as separate from the patient. Research problem: From the perspective of nurses: What are the ethical challenges in relation to next of kin in end-of-life care? Research design: A critical qualitative approach was (...) used, based on four focus group interviews. Participants: A total of 22 registered nurses enrolled on an Oncology nursing specialisation programme with experience from end-of-life care from various practice areas participated. Ethical considerations: The study was approved by the Norwegian Social Science Data Service, Bergen, Norway, project number 41109, and signed informed consent obtained from the participants before the focus groups began. Findings and discussion: Two descriptive themes emerged from the inductive analysis: ‘A feeling of mistrust, control and rejection’ and ‘Being between hope and denial of next of kin and the desire of the patient to die when the time is up’. Deductive reinterpretation of data (in the light of moral distress from a Feminist ethics perspective) has made visible the constraints that certain relations with next of kin in end-of-life care lay upon the nurses’ moral identity, the relationship and their responsibility. We discuss how these constraints have political and societal dimensions, as well as personal and relational ones. Conclusion: There is complex moral distress related to the nurse–next of kin relationship which calls for ethical reflections regarding these relationships within end-of-life care. (shrink)

Moral distress has emerged as a significant concern for critical care nurses, particularly due to the complex and demanding care provided to critically ill patients in critical care units. The ongoing COVID-19 pandemic has introduced new ethical challenges and changes in clinical practice, further exacerbating the experience of moral distress among these nurses. This systematic review compares the factors influencing moral distress among critical care nurses before and during the COVID-19 pandemic to gain a comprehensive understanding of the impact of (...) the pandemic on moral distress. For this systematic review, PubMed, Scopus, ProQuest, Web of Science, medRxiv, bioRxiv, Embase, and Google Scholar were all utilized in the search. The search covered articles published from 2012 to December 2022, encompassing a 10-year timeframe to capture relevant research on moral distress among critical care nurses. In total, 52 articles were included in this systematic review. The findings indicate that personal, caring-related, and organizational factors can influence nurses' moral distress. Before the pandemic, factors including futile and end-of-life care, conflicts with physicians, nurse performance and authority, poor teamwork, decision-making regarding treatment processes and patient care, limited human resources and equipment, medical errors, patient restraints, and nurses' age and work experience affect critical care nurses' moral distress. Similarly, during the COVID-19 pandemic, factors contributing to moral distress include futile and end-of-life care, fear of contracting and spreading COVID-19, decision-making about treatment processes, poor teamwork, and being female. This study revealed that the factors contributing to moral distress were approximately similar in both periods. Futile care and end-of-life issues were critical care nurses' primary causes of moral distress. Implementing prevention strategies and reducing these underlying factors could decrease this major issue and improve the quality of care. (shrink)

Background The recent proliferation of health care report cards, especially in cardiac care, has occurred in the absence of an ethical framework to guide in their development and implementation. An ethical framework is a consistent and comprehensive theoretical foundation in ethics, and is formed by integrating ethical theories, relevant literature, and other critical information (such as the views of stakeholders). An ethical framework in the context of cardiac care provides guidance for developing cardiac report cards (CRCs) that are relevant and (...) legitimate to all stakeholders. The purpose of this study is to develop an ethical framework for CRCs. Methods Delphi technique – 13 panelists: 2 administrators, 2 cardiac nurses, 5 cardiac patients, 2 cardiologists, 1 member of the media, and 1 outcomes researcher. Panelists' views regarding the ethics of CRCs were analyzed and organized into themes. Results We have organized panelists' views into ten principles that emerged from the data: 1) improving quality of care, 2) informed understanding, 3) public accountability, 4) transparency, 5) equity, 6) access to information 7) quality of information, 8) multi-stakeholder collaboration, 9) legitimacy, and 10) evaluation and continuous quality improvement. Conclusion We have developed a framework to guide the development and dissemination of CRCs. This ethical framework can provide necessary guidance for those generating CRCs and may help them avoid a number of difficult issues associated with existing ones. (shrink)

This article uses elements of autoethnography to theorize an in/formal support relationship between a friend with a physical disability, who uses attendant services, and me. Through thinking about our particular “frien-tendant” relationship, I find the common scholarly orientations toward “care” are inadequate. Starting from the conversations between feminist and disability perspectives on care, I build on previous work to further develop the theoretical framework of accessible care. Accessible care takes a critical, engaged approach that moves beyond understanding “accessibility” as (...) merely concrete solutions to create more inclusive forms of care. Care, in this context, is positioned as an unstable tension among competing definitions, including that it is a complex form of oppression. Accessible care draws on feminist disability perspectives and the feminist political ethic of care to build bridges in four areas: from daily experiences of disability and support to theoretical discussions; across feminist care research and disability perspectives; across divisions and anxieties within disability communities; and from the local to transnational applications. These bridges do not aim to resolve debates but allow us to travel back and forth between differing perspectives and demonstrate the tenuous possibility of accessible practices and concepts of care. (shrink)

The relationship between feminist theory and traditionally feminine activities like mothering and caring is complex, especially because of the current diversity of feminist scholarship. There are many different kinds of feminist theory, and each approaches the issue of women's oppression from its own angle. The statement, "feminist ethics is about mothering and caring," can be critically evaluated by outlining specific feminist approaches to ethics and showing what role mothering and caring play in each particular view. (...) In this paper, feminine and feminist perspectives are delineated, and the four classic feminist approaches (liberal, Marxist, radical, and socialist) are summarized. I argue that to some extent all of the examples of feminist ethics are "about" mothering and caring. In some cases this is because the particular view describes mothering and caring as features of the roots of women's oppression, or as a positive force in changing the prevailing social order to do away with oppression. I include a discussion of an additional role mothering might play in the socialist feminist framework. (shrink)

Background: Less sedated and more awake patients in the intensive care unit may cause ethical challenges. Research objectives: The purpose of this study is to describe ethical challenges registered nurses experience when patients refuse care and treatment. Research design: Narrative individual open interviews were conducted, and data were analysed using a phenomenological hermeneutic method developed for researching life experiences. Participants and research context: Three intensive care registered nurses from an intensive care unit at a university hospital in Norway were (...) included. Ethical considerations: Norwegian Social Science Data Services approved the study. Permission was obtained from the intensive care unit leader. The participants’ informed and voluntary consent was obtained in writing. Findings: Registered nurses experienced ethical challenges in the balance between situations of deciding on behalf of the patient, persuading the patient and letting the patient decide. Ethical challenges were related to patients being harmful to themselves, not keeping up personal hygiene and care or hindering critical treatment. Discussion: It is made apparent how professional ethics may be threatened by more pragmatic arguments. In recent years, registered nurses are faced with increasing ethical challenges to do no harm and maintain dignity. Conclusion: Ethically challenging situations are emerging, due to new targets including conscious and aware critical care patients, leaving an altered responsibility on the registered nurses. Reflection is required to adjust the course when personal and professional ideals no longer are in harmony with the reality in the clinical practice. RNs must maintain a strong integrity as authentic human beings to provide holistic nursing care. (shrink)

Purpose This paper aims to review and critically assess the role that data visualizations played as communication media tools to help society during a worldwide crisis. This paper re-creates and analyzes several visualizations, critically and ethically assesses their strengths and limitations and provides a set of best practices that are informative, accurate, ethical and engaging at each stage in a reader’s interest. Design/methodology/approach The paper bases its methodology on the construct of “The Network Society” (Van Dijk, 2006; Castells, 2000, (...) 2006) by creating a series of social networked visualizations, identifying the challenges and pitfalls associated with this communication approach and suggesting best practices in information communication technology. The case study is COVID-19. Findings The research in this study found that visual data dashboards and interactive Web-based charts did play a significant role in helping society understand COVID-19’s impact to make better informed decisions about society’s health and safety. Research limitations/implications Visual expositions of data do have strengths and weaknesses depending on how they are designed, how they communicate the story and how they are ethically deployed. Best practices are provided to help mitigate these limitations. Practical implications Visualizations are certainly not new, but the technology for rapidly developing and sharing them is new. Visual expositions provide an effective media for communicating complex information to a networked society. Social implications Visual expositions provide an effective media for communicating complex information to a networked society. Originality/value This paper highlights the significance of the need to understand complex data in a crisis in a visual format and to communicate the information quickly, persuasively, effectively and ethically to a networked audience. (shrink)

Introduction Patient safety is essential for healthcare quality and a global concern. The rapid advancement of medical technology presents ethical challenges for critical care nurses, who navigate complex decision-making processes. Given their close relationships with patients, nurses are uniquely positioned to address patient safety issues. Thus, enhancing nurses’ moral sensitivity and ethical values is increasingly important. Objective This study aims to explore the relationship between moral sensitivity and attitude towards patient safety in critical care nurses. Methods This cross-sectional, descriptive-correlational study (...) was conducted from June to September 2022 in three hospitals affiliated with Hamadan University of Medical Sciences in Iran. Participants were nurses in intensive care units (ICUs), selected via convenience sampling. A total of 382 nurses completed questionnaires assessing demographic information, moral sensitivity, and patient safety attitudes. Data analysis was performed using descriptive statistics, t-tests, ANOVA, Pearson’s correlation, and multiple regression in SPSS 26. Ethical considerations: This research received ethical approval from the Ethics Committee of Hamadan University of Medical Sciences. Participants provided informed consent regarding the study’s objectives, and their confidentiality was strictly upheld throughout the research. Results The nurses’ average age and work experience were 38.6 years and 12.4 years, respectively. Mean scores for moral sensitivity and patient safety attitude were 81.65 ± 2.69 and 51.47 ± 2.21, indicating high levels and a significant positive correlation. Factors such as increasing age, work experience, fewer working hours, and completion of ethics training were linked to more positive attitudes towards patient safety ( p <.05). Regression analysis showed that 42.8% of the variability in attitudes towards patient safety could be explained by moral sensitivity and demographic characteristics. Conclusion This study highlights the relationship between moral sensitivity and patient safety attitudes among critical care nurses, emphasizing the importance of education, experience, and training in shaping ethical values. Enhancing moral sensitivity is vital for reducing risky behaviors and improving patient safety outcomes in critical care settings. (shrink)