Medical Ethics

Background Shared decision-making in healthcare is a collaborative process where patients are supported to make informed decisions according to their preferences. Healthcare decisions affect patients' lives which necessitates patients to participate in decisions concerning their health. This study explored experiences and ethical issues related to shared decision-making in a rural healthcare setting. Methods An exploratory qualitative study was conducted at Budumba Health Centre III and Butaleja Health Centre III in rural Eastern Uganda. In this study, 23 in-depth interviews were conducted (...) among 12 healthcare providers and 11 patients. Data was analyzed thematically using NVivo-12 plus software. Results Four themes emerged which included: Paternalistic cultures of care, challenges, strategies for improvement, and ethical issues. Patients at both facilities expressed the need to be involved in decision-making processes. However, many stressed that they are not engaged in decision-making about their health. Many healthcare providers noted that shared decision-making could improve patient prognosis but are faced with challenges related to low male involvement and the influence of cultural and religious practices, including myths and patriarchal attitudes which impact effective patient engagement. Ethical issues identified include concerns about informed consent, privacy and confidentiality, deception, and harm. Conclusions This study highlighted the need for better sensitization of patients and comprehensive training for healthcare providers to minimize and resolve ethical issues that emerge during shared decision-making processes. Therefore, targeted interventions are needed to enhance decision-making processes in rural healthcare including but not limited to developing shared decision-making manual and continuous training of healthcare providers to ethically engage patients. Further research is needed to explore larger facilities with a bigger scope including patients under 18 years of age and and their surrogates. (shrink)

This article reflects on the concepts of health, well‐being, gender, and dignity when providing nursing care to older adults, focusing on their wisdom and the phenomena that can affect their health or improve their quality of life. These concepts are analyzed based on the current health conditions of older adults and their needs, on the perspectives of authors in this field of research, and on Patricia Benner's philosophy: the integration of science, clinical wisdom, and ethics in nursing practice. Furthermore, this (...) article aims at contributing to the health, well‐being, gender, and dignity of older adults, despite the discrimination that they may face, as well as to the reality of nursing practice. As such, this study stems from the observed reality, experiences as caregivers and reflection of nurses committed to the values of the profession. Therefore, the article begins with the conceptualization of health, well‐being, gender, and dignity, subsequently analyzing the health–disease status of older adults from a gender perspective, addressing nursing care for older adults based on Patricia Benner's philosophy and concluding with reflections on nursing practice for a better future for older adults. (shrink)

The moral authority of advance directives (ADs) in the context of persons living with dementia (PLWD) has sparked a multifaceted debate, encompassing concerns such as authenticity and the appropriate involvement of caregivers. Dresser critiques ADs based on Parfit's account of numeric personal identity, using the often‐discussed case of a PLWD called Margo. She claims that dementia leads to a new manifestation of Margo emerging, which then contracts pneumonia. Dworkin proposes that critical interests, concerning one's higher moral values, trump experiential interests (...) (things or activities one enjoys because they are pleasurable). Dresser argues that Margo's current experiential interests override her self's critical ones, as they contribute significantly to her quality of life (QoL). To render the argument more realistic, I introduce a variation in which Margo develops delirium, a common and severe comorbidity in PLWD. I argue that delirium could precipitate a sudden decline in experiential interests and, consequently, a deterioration in QoL. Given the uncertain trajectory of Margo's illness, I contend that her competent self's critical interests, as reflected in her AD, along with her right to self‐ownership, should take precedence over current experiential interests. Thus, the AD possesses moral authority. However, it is imperative for healthcare professionals to offer consultations for PLWD, facilitating an understanding of ADs and enabling a shared decision‐making process. Such consultations are essential for honouring the autonomy and dignity of PLWD, ensuring that their values and preferences guide ethical decision‐making amidst the complexities of dementia care. (shrink)

In this paper, we engage in philosophical inquiry to consider the relevance of Indigenous Knowledges (IKs) for reimagining dementia care for individuals living with dementia. We outline the limitations of philosophical perspectives aligned with Eurocentric academic knowledge, arguing that such knowledge relies on an individualistic view of self and neglects the body and embodied experience in dementia care. We demonstrate how a personal diachronicity perspective diminishes the importance of valuing the fluid and dynamic self‐identities of persons living with dementia. We (...) then turn to the epistemological foundations of IKs through philosophical inquiry, focusing on relationality, connectiveness, and holism, and discuss the role of IKs in institutional knowledge systems. We then explore the potential relevance of IKs to widen the epistemological and ontological gaze centering on the relational concepts of personhood, holism, continuity, embodiment, and homogeneity of self that are foundational to reimaging dominant approaches to dementia care. (shrink)

The transformation of societies' age structures has intensified the need for nursing care, especially in economically developed regions of the world. This will necessitate societal decisions that determine how care needs are met in the long term. This article offers a sociological perspective on nursing care using Luhmann's systems theory. To make the designation of a functional nursing system with independent observation plausible, social changes were traced based on historical events, semantics, and other social structures to develop the primary view (...) of the nursing system. On this basis, a functional definition of the nursing system and its relationship to problems and problem‐solving is possible. This proposal is intended to clarify the fundamental questions of nursing science: What is nursing and what is behind it? Through abstraction, this article develops a unified representation of nursing's distinct way of observation to support the determination of a unique research object for nursing science as an academic discipline. In line with Brandenburg's statement that nursing science must follow the interests of others as long as it is not possible to conquer a terrain occupied by the discipline independently, the need to develop a genuine discipline remains. Only then, it is assumed, can nursing science significantly contribute to other functional systems and to societal decisions that will determine how care needs are addressed in the future. (shrink)

This book discusses a strategy for the future adoption of human enhancement technologies in a pluralistic society. The book argues that biomedical technology capability, ethical evaluation and effective public policy are all needed to ensure that enhancement technologies are adopted as a common good, consistent with Christian ethical principles.

The book provides an argument against a right to conscientious objection by healthcare professionals. In increasingly multicultural societies inspired by pluralism, and given the range of controversial medical procedures that are or will be legal in many countries, claims about healthcare professionals' right to abide by their own moral or religious views in the exercise of their profession become more frequent. This book explains why arguments for pluralism, tolerance, and diversity that support a right to freedom of conscience in society (...) at large do not support the same right within the healthcare profession, or indeed any profession governed by internal norms of professionalism that someone freely decides to enter. (shrink)

The increasing societal emphasis on physical appearance, particularly influenced by social media, has led to a significant rise in demand for aesthetic dentistry procedures. This study aims to explore the ethical dimensions of marketing practices and the phenomenon of overtreatment in cosmetic dental procedures, highlighting the implications for patient care and professional integrity. A systematic literature review was conducted across four databases, yielding an initial 76 articles. After applying inclusion and exclusion criteria, 12 articles were selected for analysis. The review (...) focused on ethical considerations, marketing practices, and overtreatment in aesthetic dentistry, employing narrative synthesis to extract relevant data. The findings indicate that social media is a primary driver of patient expectations, often prioritizing aesthetic outcomes over health considerations. This trend raises ethical concerns about informed consent and autonomy. The commodification of dental care, fueled by aggressive marketing strategies, has resulted in a notable increase in overtreatment, where unnecessary procedures are performed to satisfy commercial pressures and idealized beauty standards. The review highlights a lack of robust ethical guidelines governing marketing practices in aesthetic dentistry, exacerbating these issues. The study underscores the urgent need for clear ethical frameworks to guide dental practitioners in balancing patient welfare with business interests. Recommendations include the implementation of ethics education in dental curricula, the development of comprehensive ethical guidelines, and fostering open communication between practitioners and patients. These measures are essential for enhancing informed decision-making and ensure that patient care remains the priority in aesthetic dentistry. (shrink)

Parenting our biological children is a centrally important matter, but how, if it all, can it be justified? According to a contemporary influential line of thinking, the acquisition by parents of a moral right to parent their biological children should be grounded by appeal to the value of the intimate emotional relationship that gestation facilitates between a newborn and a gestational procreator. I evaluate two arguments in defence of this proposal and argue that both are unconvincing.

The COVID-19 pandemic has led governments worldwide to make ethically controversial decisions. As a result, healthcare professionals are facing several ethical dilemmas, especially in terms of healthcare services provided to senior citizens. Thus, the aim of this review is to identify and categorize ethical dilemmas as well as propose solutions regarding health care services for elderly individuals. A qualitative systematic review of the literature was undertaken in the first tier of the pandemic. All identified scientific and editorial articles published in (...) English or French between December 2019 and October 2021 were included. An article was excluded if it was commercial, did not address an issue in the care of the elderly or present any qualitative data. Article eligibility was determined through a process of triangulation among three independent reviewers. Initially, 69 articles met our inclusion criteria and were selected for this review. These studies can be divided into 2 distinct categories: scientific articles (17 studies) and expert opinion articles (52 articles). However, due to the large quantity of qualitative data that was extracted, only the results from the scientific literature are presented here. The analysis of the data of 17 studies has allowed the emergence of 2 main themes of ethical dilemmas: 1) access to care (3 subthemes: A) triage decisions for admission, B) access to the intensive care unit and C) vaccine allocation) and 2) infection control decisions (2 subthemes: (D) isolation and E) autonomy). Our results also revealed 4 categories of potential solutions to the encountered ethical dilemmas, namely, optimal protocols, enhanced communication, caregiver support and technological assistance (virtual team-based, AI). The ethical dilemmas that emerged from our results highlight the interest of a serious international discussion around the phenomena of ageism and its potential ethical implications for health care workers (be it under normal circumstances or exceptional circumstances such as those of a pandemic). We highly recommend that future research be undertaken to test the efficacy of the proposed solutions in providing age-friendly, dilemma-free health care and environments. (shrink)

Abortion and euthanasia are still one of the greatest bioethical challenges. Previous studies have shown that there are differences in attitudes towards these issues depending on socio-demographic characteristics and socio-cultural environment (country of residence). As part of the scientific research project EuroBioMed, we compared the attitudes of students from three Mediterranean countries towards abortion and euthanasia and examined them from the perspective of Mediterranean bioethics. A pen-to-paper survey was conducted on a convenient sample of students (N = 1097) from five (...) universities and four fields of study (Medicine, Law, Theology and Philosophy) in Croatia, Greece and Italy to investigate their attitudes towards abortion and euthanasia. Three hypotheses were tested using t-test and ANOVA for differences in attitudes according to country, field of study, year of study, gender, religiosity, political orientation, financial status, and size of place of residence. While attitudes towards abortion were not statistically significantly different between students from different countries, the analysis showed that students from Italy had more liberal attitudes towards euthanasia. Theology students had more conservative attitudes towards both abortion and euthanasia, while there were no differences between the other groups. Women, final year students, non-religious and politically left-oriented students had more liberal attitudes. The results provided an insight into students’ attitudes towards abortion and euthanasia. Knowledge of the attitudes of these future experts can be valuable for the discussion of these issues. These results also provided a basis for a better understanding of the construct of Mediterranean bioethics. (shrink)

Stakeholders in medical research have roles in ensuring that research participants are protected. Medical journals play gatekeeping roles in the responsible conduct of research. They help guard against the publication of findings of unethical research, such as those with compromised participant welfare. Nigerian medical journals are being created to support the growing number of research enterprises. In this study, we aimed to determine the compliance of Nigerian medical journals with guidelines on research participant protection. This was a descriptive cross-sectional study (...) of Nigerian medical journals and articles. We used a checklist to obtain information on journal characteristics and the presence of recommendations from the International Committee of Medical Journal Editors (ICMJE) on the protection of research participants in the journal instructions to authors and articles. The data were analysed via IBM SPSS version 23. We studied 40 journals and 350 journal articles. Thirty-one (77.5%) journals required ethical approval and the Declaration of Helsinki statement in their instructions to the authors, while informed consent was present in 26 (65.0%) journals; 6 (15.0%) journals had no participant protection guidelines. Forty-one (11.7%) articles complied with all three recommendations on research participant protection, whereas 60 (17.1%) articles did not. Ethical approval was most common in 268 (76.6%) articles, whereas it was least common in statements on the Declaration of Helsinki in 50 (14.3%) articles. The presence of participant protection recommendations in instructions to authors was not associated with compliance with these recommendations in published articles (p > 0.05). Although there is fairly good compliance of Nigerian medical journals with research participant protection recommendations, there are still gaps, which highlight the need for remedial measures. (shrink)

Recently, an increasing number of countries have been allowing voluntary active euthanasia (VAE) and physician-assisted suicide (PAS) as part of palliative care. Japan stands out as the most aged country in the developed world, and while the need for palliative care for older adults with dementia has been noted, there has been reluctance to openly address VAE and PAS. We conducted an online questionnaire survey using a vignette case to investigate the attitudes of Japanese physicians and the general public towards (...) VAE and PAS, and the factors influencing these attitudes. The findings revealed that Japanese physicians did not display support for euthanasia (2%) and assisted suicide (1%); however, the general public supported euthanasia (33%) and assisted suicide (34%). Notably, among the general public, males exhibited significantly higher support for PAS than females. Japanese physicians and the general public expressed a more negative stance towards VAE and PAS compared with their counterparts in Western countries. This disparity may be attributed to the influence of the Buddhist view of life and death and family-centeredness in the Japanese culture, which affects people’s attitudes towards assisted dying. The gap between physicians and the general public could potentially lead to challenges in medical practice, thereby, necessitating the need for open discussions in the future. (shrink)

Ethics is based on moral principles that should be the foundation for every healthcare decision, however, ethical concepts can often be challenging to define in specific clinical scenarios. There are several instances where a practising clinician often finds it difficult to make a proper decision despite maintaining integrity and professionalism. The objective of the present study was to explore the ethical dilemma faced by orthodontists practicing in Saudi Arabia concerning orthodontic treatment. This was a questionnaire-based cross-sectional study that was adapted (...) from the scenarios of ethical dilemmas presented by Jerrold in 1998. Ten orthodontists from each province of Saudi Arabia were requested to participate in this study and the questionnaire were sent through email and their responses were analysed. A total of 37 responses were obtained (out of 130) with a response rate of 28.46%. Among them 23 were female and 14 were male. Most participants belonged to the age group 30–39 years and most of them have clinical experience of more than 5 years. There was a wide variation in the responses among the participants in all the scenarios presented. The median likelihood of getting similar scenarios in their clinical practice in Saudi Arabia ranged from 3 to 3.5. There was a wide variation in the opinion among the practising orthodontists in Saudi Arabia in the scenarios presented. The presented scenarios are less likely to be perceived in the local context and some new situations of ethical dilemmas are identified. (shrink)

Background This study explored the ethical issues associated with community-based HIV testing among African, Caribbean, and Black (ACB) populations in Canada, focusing on their perceptions of consent, privacy, and the management of HIV-related data and bio-samples. Methods A qualitative community-based participatory research (CBPR) approach was employed to actively engage ACB community members in shaping the research process. The design included in-depth qualitative interviews with 33 ACB community members in Manitoba, Canada. The study was guided by a Community Guiding Circle, which (...) contributed to study design, data analysis, and interpretation. A diverse sample was recruited through community agencies, social media, and flyers, with considerations for variations in age, gender, sexual orientation, and geographical location. The study employed iterative inductive thematic data analysis. Findings Participants expressed significant concerns about the collection, sharing, and use of HIV data from healthcare encounters, revealing mistrust towards institutions like police, child welfare, and immigration accessing their health information. Their worries centered on the handling of biological samples, data misuse, potential human rights violations, HIV criminalization, deportations, challenging consent, privacy, and bodily autonomy principles. While open to contributing to medical research, they unanimously demanded greater transparency, informed consent, and control over the secondary use of their health data. Conclusions The study underscores the need for culturally safe approaches in HIV testing and ethical governance in healthcare for ACB communities. It highlights the importance of prioritizing participant empowerment, ensuring transparency, practicing informed consent, and implementing robust data security measures to balance effective HIV information management with the protection of individual rights. (shrink)

Background Considering the disruptive potential of AI technology, its current and future impact in healthcare, as well as healthcare professionals’ lack of training in how to use it, the paper summarizes how to approach the challenges of AI from an ethical and legal perspective. It concludes with suggestions for improvements to help healthcare professionals better navigate the AI wave. Methods We analyzed the literature that specifically discusses ethics and law related to the development and implementation of AI in healthcare as (...) well as relevant normative documents that pertain to both ethical and legal issues. After such analysis, we created categories regrouping the most frequently cited and discussed ethical and legal issues. We then proposed a breakdown within such categories that emphasizes the different - yet often interconnecting - ways in which ethics and law are approached for each category of issues. Finally, we identified several key ideas for healthcare professionals and organizations to better integrate ethics and law into their practices. Results We identified six categories of issues related to AI development and implementation in healthcare: (1) privacy; (2) individual autonomy; (3) bias; (4) responsibility and liability; (5) evaluation and oversight; and (6) work, professions and the job market. While each one raises different questions depending on perspective, we propose three main legal and ethical priorities: education and training of healthcare professionals, offering support and guidance throughout the use of AI systems, and integrating the necessary ethical and legal reflection at the heart of the AI tools themselves. Conclusions By highlighting the main ethical and legal issues involved in the development and implementation of AI technologies in healthcare, we illustrate their profound effects on professionals as well as their relationship with patients and other organizations in the healthcare sector. We must be able to identify AI technologies in medical practices and distinguish them by their nature so we can better react and respond to them. Healthcare professionals need to work closely with ethicists and lawyers involved in the healthcare system, or the development of reliable and trusted AI will be jeopardized. (shrink)

The World Professional Association for Transgender Health guidelines Standards of Care 8 draw on ethical arguments based on individual autonomy, to argue that healthcare and other professionals should be advocates for trans people. Such guidelines presume the presence of medical services for trans people and a degree of consensus on medical ethics. Very little is known, however, about the ethical challenges associated with both providing and accessing trans healthcare, including gender affirmation, in the Global South. In light of the challenges (...) associated with medical and legal gender affirmation in Indonesia, we conducted a qualitative study to understand the views of trans people, healthcare providers, and legal practitioners. In this qualitative study, we drew on a participatory methodology to conduct 46 semi-structured interviews between October and December 2023, with trans people (10 trans feminine people and 10 trans masculine people, each interviewed twice) and key informants (three healthcare providers and three lawyers and paralegals). Trans people were a central part of the research team from inception through to analysis and writing. Participants were recruited via community-led sampling. Data analysis of interview data took place through an immersion/crystallisation technique and preliminary inductive coding which highlighted key quotes. We focused on an inductive analysis using participant narratives to identify key concepts in the ethics of gender affirmation in Indonesia. We characterize the ethics of supportive healthcare workers, community members, and family members, as that akin to “accomplices,” a concept of ethics used in theories of racial justice which evaluate a willingness to support people to navigate laws and regulations which perpetuate injustices and violence. Overall, both trans people and key informants shared an understanding that the legal status of gender-affirming medical care was particularly ambiguous in Indonesia due to a lack of clarity in both laws and regulations. For trans participants, ethical arguments for the validity of legal and medical gender affirmation was premised on evidence that their gender identity and expression was already recognized within society, even if limited to immediate friends and family. Given that all participants expressed a desire for gender affirmation, but such services were widely unavailable, accomplices played a crucial role in supporting trans people to access healthcare. An empirical study based on an “ethics from below” helps to show that arguments grounded in autonomy, or based on biomedical evidence, are unlikely to alter unjust laws or facilitate a change to pathologizing guidelines governing understanding of trans people’s healthcare and legal needs in Indonesia. We provide an analysis that is sensitive to the ethics of facilitating gender affirmation in a context where that process is inherently social, and often articulated in relation to a prevailing religious morality. (shrink)

Biobanks are vital for advancing medical research, and public participation is a crucial determinant of their success. This study uses a survey to assess the awareness, attitudes, and motivation of the public in China with regard to participating in biobanks. We conducted an online survey that yielded 616 responses from participants with diverse demographic backgrounds. The survey included questions on the respondents’ awareness of biobanks, their attitudes toward them, their preferences with regard to consent, and their concerns. The results of (...) the survey revealed that 57.95% of the respondents were aware of biobanks. Altruism was the respondents’ primary motivation for participation in biobanks. Their preferences for models of consent varied. The respondents raised concerns about the commercialization of biobanks (56.66%) and data privacy (55.84%). Notably, only 37.01% of the respondents were concerned about the risk of discrimination in biobanks, where this was lower compared with the results for populations in Western countries. This study provides valuable insights into the Chinese public’s awareness of and attitudes toward biobanks. To foster public trust and enhance participation, biobanks should prioritize transparent and continual communication to ensure that the participants are well informed about the use and protection of the samples that they have donated. Future research should explore the influence of cultural nuances to develop strategies that address specific concerns and ethical challenges in the context of public participation in biobanks. (shrink)

Being able to measure informed choice represents a mechanism for service evaluation to monitor whether informed choice is achieved in practice. Approaches to measuring informed choice to date have been based in the biomedical hegemony. Overlooked is the effect of epistemic positioning, that is, how people are positioned as credible knowers in relation to knowledge tested as being relevant for informed choice. To identify and describe studies that have measured informed choice in the context of prenatal screening and to describe (...) epistemic positioning of pregnant people in these studies. Online databases to identify papers published from 2005 to 2021. The PRISMA-ScR checklist guided data collection, analysis and reporting. Secondary analysis that considered hermeneutics (e.g., knowledge that was tested, study design) and testimony (e.g., population descriptors) developed a priori. Twenty-nine studies explored the measurement of informed choice. None reported that pregnant people were involved in the design of the study. Two studies reported pregnant people had some involvement in the design of the measurement. Knowledge tested for informed choice included technical aspects of screening, conditions screened and mathematical concepts. Twenty-seven studies attributed informed choice to population descriptors (e.g., race/ethnicity, age, education). Population descriptors were reified as characteristics of epistemic credibility for informed choice obtained. For example, when compared to a high school qualification, a tertiary qualification was a statistically significant characteristic of informed choice. When compared by race, white people were found to be significantly more likely to make an informed choice. Additional demographic descriptors such as age, language spoken, faith and previous pregnancies were used to further explain differences for informed choice obtained. Explanations about underlying assumptions of population descriptors were infrequent. Using population descriptors in the biomedical hegemony as explanatory variables for informed choice can position (groups of) people as more, or less, epistemically credible. Such positioning could perpetuate epistemic injustices in practice leading to inequitable access to healthcare. To better uphold (pregnant) people as credible knowers population descriptors should instead be contextual (and contextualising) variables. For example, as indicators of social privilege. Further, making room for ways of knowing that go beyond the biomedical hegemony requires the development of epistemically just ‘measures’ through intentional, inclusive design. (shrink)

Rationale: Patients with advanced dementia experience multifaceted vulnerabilities because of their diminished capacities for decision making. The dominant versions of person-centred care (PCC) emphasise patient preferences and autonomy, which often undermines a recognition of their distinct unfulfilled needs. Determining whether an individual autonomy conception of personhood applies to patients with advanced dementia is morally problematic from various theoretical perspectives and leads to the one-approach-fits-all problem when caring for this patient population. -/- Aims and Objectives: The availability of patients' advanced directives (...) varies depending on their cultural backgrounds. The goal of the study is to argue that PCC, with a focus on relational autonomy, should be the first step for caring for patients with advanced dementia. -/- Method: The study engages in a critical exploration of inclusivity and diversity in ethical thinking within a framework of PCC and uses philosophical argumentation to assess the viability of a relational autonomy conception of PCC. -/- Results and Conclusion: By taking relationality seriously, especially in caring for patients with advanced dementia in a multicultural society, and by considering the moral nexus of unmet needs through the perspective of PCC, we can resolve the problem of one-approach-fits-all in dementia care. (shrink)

Some transgender and nonbinary people undergo phalloplasty and/or metoidioplasty as part of their medical transition process. Across surgical disciplines, a variety of resources are used to assist patients who are preparing for surgeries, including educational materials, workshops, peer support, and lifestyle changes. For gender-affirming surgeries, patients undergoing assessments to discern whether they are ready to undergo the surgery, and to assist them in achieving preparedness when needed. Little research investigates what resources are useful in helping patients to feel prepared to (...) undergo phalloplasty or metoidioplasty, and how assessments and resources can promote patient autonomy in the process. Respect for patient autonomy is one of the central tenets of ethical healthcare, yet historically, scholarship related to pre-surgical assessments for gender-affirming surgery has focused determining the ideal surgical candidate rather than respecting patient autonomy and ascertaining individual patient needs. This study sought to fill this gap by utilizing data from PROGRESS (Patient-Reported Outcomes of Genital Reconstruction and Experiences of Surgical Satisfaction), a cross-sectional, community-based survey of trans and nonbinary adults from the United States of America and Canada who had undergone one or more of these surgeries. Results revealed most participants (86%, n = 186) felt prepared to undergo surgery, though the majority of our sample (53%, n = 105) did not find referral letter assessments to be helpful. Peer support such as online resources/blogs were rated as highly useful, along with surgical consults. In a multivariable logistic regression, higher perceived preparedness was associated with identifying as queer (inclusive of gay, bi and pansexual compared to being straight), and feeling that one’s assessment process was useful (as opposed to not useful). Type of assessment was not significantly associated with preparedness; therefore, what is most useful when preparing for surgery may vary across individuals. Healthcare professionals who interact with preparing patients should develop new or utilize existing resources to assist patients in identifying their preparation needs and achieving preparedness. Our data supports assessments that center surgical care planning rather than assessing level of gender dysphoria. Future longitudinal research could further refine which assessment processes are most effective in helping patients who are preparing for these surgeries. Assessments should ensure that patients are appropriately prepared to undergo and recover from surgery through a robust process of informed consent. (shrink)

Background The scrutiny surrounding gender-affirming medical treatment (GAMT) for youth has increased, particularly concerning the limited evidence on long-term treatment outcomes. The Standards of Care 8 by the World Professional Association for Transgender Health addresses this by outlining research evidence suggesting “effective” outcomes of GAMT for adolescents. However, claims concerning what are considered “effective” outcomes of GAMT for adolescents remain implicit, requiring further reflection. Methods Using trans negativity as a theoretical lens, we conducted a theory-informed reflexive thematic analysis of the (...) literature cited in the “Research Evidence” section of the SOC8 Adolescents chapter. We selected 16 articles that used quantitative measures to assess GAMT outcomes for youth, examining how “effective” outcomes were framed and interpreted to uncover implicit and explicit normative assumptions within the evidence base. Results A total of 44 different measures were used to assess GAMT outcomes for youth, covering physical, psychological, and psychosocial constructs. We identified four main themes regarding the normative assumptions of “effective” treatment outcomes: (1) doing bad: experiencing distress before GAMT, (2) moving toward a static gender identity and binary presentation, (3) doing better: overall improvement after GAMT, and (4) the absence of regret. These themes reveal implicit norms about what GAMT for youth should achieve, with improvement being the benchmark for “effectiveness.” Discussion We critically reflect on these themes through the lens of trans negativity to challenge what constitutes “effective” GAMT outcomes for youth. We explore how improvement justifies GAMT for youth and address the limitations of this notion. Conclusions We emphasize the need for an explicit discussion on the objectives of GAMT for adolescents. The linear narrative of improvement in GAMT for adolescents is limited and fails to capture the complexity of GAMT experiences. With currently no consensus on how the “effectiveness” of GAMT for adolescents is assessed, this article calls for participatory action research that centers the voices of young TGD individuals. (shrink)

The primary objective of this study was to conduct a comprehensive questionnaire survey on the practices of research ethics committees reviewing academic research projects in Czechia. The study aims to provide an unbiased and objective assessment of the current practices of research ethics committees, namely to obtain the missing data on their functioning in the context of academic research, to identify difficulties and shortages that threaten the responsible functioning of research ethics committees in the country and to investigate the implementation (...) of Additional Protocol on Biomedical Research CETS No. 195 in their practice. Such research has never been conducted in Czechia. This was a mixed-methods study, in which the online survey with closed and open-ended questions was chosen to explore the situation regarding ethics assessment of research involving human participants. We developed a questionnaire containing 18 questions concerning several aspects of the functioning of research ethics committees. The questionnaire was in Czech language and was administered through the Qualtrics platform anonymously. The target group of 61 research ethics committees at research institutions was approached by emails and we received 43 completely filled questionnaires, i.e., response rate of 67%. We obtained valuable data on the functioning of research ethics committees in Czechia in three main domains: the mandate and composition of the committee; the scope of its agenda; the process of evaluation including the voting procedure. In addition, the final set of open-ended questions provided an in-depth look at the problems faced by research ethics committees in Czechia. From the results is evident that the responsible assessment of the ethics of research involving human subjects is still not satisfactorily addressed and established for routine practice in the country. The outcomes of our study revealed that the main problem of research ethics in Czechia is the lack of national legislation on research ethics governance. To address this problem, the country requires a legislative framework accompanied by supportive measures aimed at educating, guiding and advising research ethics committees, especially in the Czech academic environment. Not applicable. (shrink)

Background Effective healthcare delivery in today's diverse society necessitates healthcare providers' adeptness in navigating cultural and religious nuances in patient care. However, the integration of cultural competence training into medical education remains inadequate, particularly concerning the care of Muslim patients. In response, we introduce a novel educational intervention aimed at enhancing intercultural proficiency among medical students, emphasizing care for Muslim patients. Methods The intervention comprised interactive seminars and simulated patient sessions. With a bespoke and the Cross-Cultural Competence of Healthcare Professionals (...) (CCCHP-27) questionnaire the pre- and post-course intercultural competencies of n = 31 medical students of the Medical Faculty of Jena University were assessed. Additionally, there was a control group consisting of 34 students. Statistical analyses including descriptive statistics, paired samples t-tests, Wilcoxon tests, correlation analysis, Mann–Whitney U-tests, and multiple regression analysis were employed for data analysis. Results Results of the bespoke questionnaire reveal significant improvements in intercultural knowledge (median pre 1.0 (0.6 – 1.6), median post 2.2 (2.4-2.8), p < 0.001) and in knowledge regarding Muslim patients (median pre 1.0 (0.5 – 1.5), median post 2.5 (2-3), p < 0.001) following the course. Regarding the CCCHP-27, students demonstrated a significant improvement in their skills, with pre-assessment score of 4.10 (± 0.47) and post-assessment score of 4.38 (± 0.40), p = 0.001. Female participants and those with limited prior experience demonstrated greater gains (p = 0.005 and p = 0.053). Notably, the incorporation of a session with a simulated patient garnered favorable feedback, affirming the efficacy of practical application in consolidating learning outcomes. Discussion Our study emphasizes the importance of integrating intercultural competencies training into medical education and our findings underscore the efficacy of targeted educational interventions in enhancing intercultural competencies among medical students. For the assessment of intercultural competence, our bespoke questionnaire serves as a valuable addition to the German healthcare system. Conclusion Implementation of similar interventions into medical curricula nationwide is imperative to address the needs of diverse patient populations effectively. (shrink)

Health equity matters, but there is no universally accepted definition of this or associated terms, such as inequities, inequalities, and disparities. Given the flexibility of these terms, investigating how policymakers understand them is important to observe priorities and perhaps course correct. Accordingly, this study analyzed the perceptions high-level policymakers within the WHO African Region. An online survey was distributed to attendees of the WHO’s Fifth Health Sector Directors’ Policy and Planning Meeting for the WHO African Region by email. After responses (...) were collected, both inductive and deductive coding were applied. Inductive coding was undertaken to glean central concepts from free-form responses on understandings of health equity and deductive coding was used to assess alignment with four theories of distributive justice using a coding framework. In analyzing central concepts, three became apparent: access to health services and/or health care, financial protection, and recognizing subgroups. And when we investigated alignment with theory, most respondents’ understandings of health equity aligned with Rawls’ ‘Theory of Justice’ (95%). Of these responses, 70% were exclusively aligned with Rawls’ ‘Theory of Justice’ and 30% aligned also with another theory (this 30% was split 55% utilitarianism and 45% Sen’s Capabilities Approach). Respondent understandings of health equity showed limited alignment with other theories of distributive justice, which were: utilitarianism (n = 7/39; 17.95%), Sen’s Capabilities Approach (n = 5/39; 12.82%), and libertarianism (n = 2/39; 5.13%). Our study demonstrates that alignment with certain theories is tied to specific themes (i.e., theoretical underpinnings may guide policymakers to favour certain policy approaches). For instance, a utilitarian-minded policymaker may be focused on a widespread vaccination campaign, whereas a Rawlsian-aligned policymaker may focus on a targeted approach to reach communities that have lower vaccination rates, and a Senian-aligned policymaker may focus on health literacy programs targeted at addressing vaccine-hesitant individuals within communities with lower vaccination rates. These findings can guide high-level policymakers and international organizations to optimize decision-making by clarifying ethical alternatives. (shrink)

Background Respect for patient autonomy, the principle that patients are capable to make informed decisions about medical interventions, is fundamental in present-day medicine. However, if a patient’s request is medically not indicated, the practitioner faces an ethical dilemma represented by the conflict of the principles of patient autonomy, beneficence, and maleficence. Adjacent to topics such as medical assistance in dying and healthy limb amputation, this ethical dilemma also manifests in the care of the maxillofacial region (the oral cavity and its (...) surroundings), an area crucial to esthetic appearance, but also to everyday functions including mastication, speech, and facial expression, all of which are related to well-being. Our aim was to explore the manifestations and resolutions of the conflict between oral health and patient autonomy in relevant literature in order to contribute to the discourse of ethical challenges concerning patient autonomy, beneficence, and nonmaleficence. Methods We screened all journal articles discussing the researched ethical dilemma obtained from three databases. Two researchers developed a hierarchical coding scheme, where the parent and grandparent codes were designated deductively as: Case (situations involving the researched ethical dilemma), Judgement (decisions made in the ethical dilemma), and Principle (ideas, rules, propositions explaining the judgements); child codes were developed inductively. After coding the sources, we utilized thematic analysis to construct code constellations. Results Most themes identified in our sources advocated for the practitioner to choose the alternative that benefits the patient from a medical perspective, although no theme excluded the consideration of patient autonomy. Instances where respect for patient autonomy was encouraged concerned oral preventive care or when the requested intervention was expected to have an insignificant impact on oral health. Conclusions Ethical conflicts concerning patient autonomy, beneficence, and nonmaleficence have a marked presence in oral care. These conflicts arise through the issue of body modification, evident in cosmetic dentistry and requests for tooth extraction. Our sources generally support the argumentation for beneficence, despite the rise of cosmetic procedures in dentistry. (shrink)

Appropriate language use is essential to ensure inclusion of diverse populations in research. We aimed to identify possible language-related barriers regarding the informed consent process and propose interventions to improve clarity and understanding of pregnant and breastfeeding women participating in research. A cross-sectional qualitative study employing focus group discussions (FGD) was conducted in Uganda from August 2023 to September 2023, involving a diverse group of stakeholders from the community, including community members, research participants, and Community Advisory Board members. 19 FGD (...) comprised adult participants representing at least six different mother tongues (Luganda, Acholi, Runyankole, Runyoro, Lugbara and English). An inductive thematic approach was utilized for data analysis using NVivo version 12 software to identify language factors that influence informed consent. A series of community validation workshops ensured concurrence. At the individual level, language barriers, and low levels of literacy contributed to poor comprehension, thus hindering ability to achieve genuine informed consent. At the health facility level, participants reported that there was use of inappropriate, unclear language including inaccurate translations, with poor and complicated grammar in some consent forms. Participants reported that complex medical terminologies are difficult to translate to local languages. Community members highlighted that social/cultural norms in language use affected cultural perceptions of informed consent. To enhance understanding for individuals without education in science, participants suggested simplification of terminologies and avoidance of complex medical jargon. Researchers should identify participants’ preferred languages and communicate in those languages whenever possible. If researchers are not fluent, trained interpreters should be identified. Informed consent documents must be translated into local languages to ensure participants comprehend the study’s purpose, procedures, risks, and benefits. Involving community members during development and translation of these documents can provide valuable insights into local dialects and culturally specific concepts, ensuring that study tools like surveys and consent forms are accurate and respectful. Language barriers influence the informed consent process within communities in Uganda. These can potentially be resolved at individual, health system and community levels. Consideration of locally understandable terms in community-facing study documentation is likely to enhance understanding and could improve research participation, although further studies are needed to assess these. The use of appropriate language ensures that informed consent is genuine in keeping with principles of Good Clinical Practice, and developing a research communication strategy should be part of inclusive research design. (shrink)

Background Artificial intelligence-driven Clinical Decision Support Systems (AI-CDSS) are increasingly being integrated into healthcare for various purposes, including resource allocation. While these systems promise improved efficiency and decision-making, they also raise significant ethical concerns. This study aims to explore healthcare professionals’ perspectives on the ethical implications of using AI-CDSS for healthcare resource allocation. Methods We conducted semi-structured qualitative interviews with 23 healthcare professionals, including physicians, nurses, administrators, and medical ethicists in Turkey. Interviews focused on participants’ views regarding the use of (...) AI-CDSS in resource allocation, potential ethical challenges, and recommendations for responsible implementation. Data were analyzed using thematic analysis. Results Participant responses are clustered around five pre-determined thematic areas: (1) balancing efficiency and equity in resource allocation, (2) the importance of transparency and explicability in AI-CDSS, (3) shifting roles and responsibilities in clinical decision-making, (4) ethical considerations in data usage and algorithm development, and (5) balancing cost-effectiveness and patient-centered care. Participants acknowledged the potential of AI-CDSS to optimize resource allocation but expressed concerns about exacerbating healthcare disparities, the need for interpretable AI models, changing professional roles, data privacy, and maintaining individualized care. Conclusions The integration of AI-CDSS into healthcare resource allocation presents both opportunities and significant ethical challenges. Our findings underscore the need for robust ethical frameworks, enhanced AI literacy among healthcare professionals, interdisciplinary collaboration, and rigorous monitoring and evaluation processes. Addressing these challenges proactively is crucial for harnessing the potential of AI-CDSS while preserving the fundamental values of equity, transparency, and patient-centered care in healthcare delivery. (shrink)

Conscientious objection poses ethical dilemmas frequently encountered by nurses, allowing them to prioritize personal beliefs in caregiving. However, it may also be viewed as a stance jeopardizing patients’ healthcare access. There is no measurement tool to measure conscientious objection in nurses. This study aimed to develop a measurement tool for nurses’ conscientious objection attitudes. This research is a methodological study conducted with a total of 261 nurses in Turkiye. Following content validity assessments by ten experts, a 29-item draft scale was (...) developed. Exploratory and confirmatory factor analyses examined the factor structure, and reliability was assessed via the Spearman-Brown coefficient, intraclass correlation coefficient (ICC), and Bland Altman plot. Cronbach’s alpha estimated internal consistency and discrimination, which were evaluated by comparing lower and upper 27% groups. The Nurses’ Conscientious Objection Attitude Scale (COAS-N) comprises 29 items and three sub-dimensions (prioritizing professional values, prioritizing personal values, and requesting the right to conscientious objection). Cronbach’s alpha for the entire scale is 0.81. Validity and reliability were established for the newly developed scale measuring nurses’ conscientious objection attitudes. (shrink)

Considering the importance of complying medical and general ethics and the lack of a study on determining ethical considerations in the communication network of women undergoing hysterectomy surgery, this study aimed to present these aspects in the patients’ lives by a standard researcher-made instrument. This mixed method analysis (exploratory sequential mixed methods design was conducted in the whole of 2020 to create the “ethical considerations in communication network of women undergone hysterectomy” questionnaire and investigate its psychometric properties. A researched-made instrument (...) was validated and its psychometric properties were checked among 218 women by confirmatory factor analysis (CFA). Accordingly, the 8 factors extracted included “complying ethical consideration by the physician (a)”, “complying ethical consideration by medical team (b)”, “complying ethical consideration in the hospital (c)”, “complying ethical consideration by the secretory in the clinic (d)”, “complying ethical consideration by the spouse (e)”, and “complying ethical consideration by the family and friends (f)”, “complying ethical consideration by the media and society (g)” and “complying ethical consideration by herself (h)”. The results of Cronbach’s alpha test showed that there is moderate to good internal consistency in all dimensions. Cronbach’s alpha for the whole questionnaire was calculated as 0.75, which shows that the internal consistency is at a good level. According to the results of this study, the reliability (internal consistency) and construct validity of the ethical considerations in the communication network of women undergoing hysterectomy questionnaire were confirmed. However, in light of the study limitations, caution should be practiced in the interpretation of the results. There is a need for further longitudinal studies in multiple settings using random sampling methods. (shrink)

During the COVID-19 pandemic, global healthcare systems faced unprecedented challenges, with a lack of resources and suboptimal patient care emerging as primary concerns. Our research, using a comprehensive 24-item electronic questionnaire, “Reflections on the Provision of Healthcare during the COVID-19 Pandemic,” delved into the experiences of 938 physicians across the Czech Republic. Over fifty per cent observed a “lower standard of care” compared to pre-pandemic levels. A division arose among physicians regarding a decision’s medical, ethical, or legal basis, with a (...) notable gender disparity: male doctors leaned towards medical perspectives, whereas females accented the ethical perspective. Decision-making concerning health care limitations required agreement among the physicians on duty, interdisciplinary teams, or shift supervisors. Physicians reported varying degrees of patient or family participation in health care decisions. Variables such as age, pre-existing health conditions, and life expectancy influenced care decisions. Surprisingly, half of the physicians faced refusals of patients’ transportation to better-equipped facilities due to resource constraints. One-third of physicians never discuss the decision about care limitation and other options with patients or their families. As a result, almost fifty per cent of the physicians rarely or never imparted information about care limitations to patients. The survey shed light on the profound ethical dilemmas hospital physicians face across different types of healthcare facilities during the pandemic. It uncovered the need for open dialogue and scholarly debate on resource allocation and strengthening the role of patients and their families in care decisions in future healthcare crises. (shrink)

Background The impetus for policies promoting medical data sharing in China has gained significant traction. Nonetheless, the present legal and ethical framework governing the research use of medical data in China, is characterized by a more restrictive rather than permissive approach. The proportion of Chinese medical data being leveraged for scientific research still has room for improvement at present, indicating a significant untapped potential for advancing medical knowledge and improving healthcare outcomes. Building upon this research, we aim to delve deeper (...) into the challenges researchers encounter in the sharing of medical data through focus group interviews. Methods We conducted two focus group interviews study with researchers representing diverse disciplines to explore their perspectives on 21 June 2021 and 28 July 2021. A total of seventeen researchers willingly participated in this study, representing various professional backgrounds. Similar codes were merged. Research team discussions were also utilized to select interviewees’ statements that were regarded as typical or representative. Results The respondents demonstrated a strong understanding that medical data should not be disseminated arbitrarily, recognizing the importance of sharing data in compliance with laws. Through the interview, we found that although respondents stressed the importance of careful consideration regarding if and when this information can be responsibly released, none of the respondents raised the issue of necessitating consent from data subjects for the research use of medical data. This observation sharply contrasts with the stringent separate consent provisions for secondary data use outlined in the PIPL. Conclusions The findings from the focus group studies shed light on researchers’ barriers and ethical challenges towards medical data sharing for scientific research, highlighting their deep concern for data security and cautious approach to sharing. The key objectives aimed at facilitating and enabling the reuse of medical data encompass enhancing interoperability, harmonizing data standards, improving data quality, safeguarding privacy, ensuring informed consent, incentivizing patients, and establishing explicit regulations pertaining to data access and utilization. (shrink)

Background Community engagement (CE) is one of the key strategies to optimize ethical integrity in research. However, the knowledge base on how CE should be effectively and ethically conducted, particularly for genetics and genomics research (GGR), is limited. Lessons have not been drawn from the experiences of key stakeholders in GGR, on CE, in Uganda. Aim To analyze the experiences and perspectives of the key stakeholders (GGR researchers, lay communities, and REC members) on engaging communities in GGR, to consequently inform (...) how communities could be ethically engaged in such research, in Uganda. Method A cross-sectional qualitative study was conducted at; Makerere University, Uganda Virus Research Institute, and Mulago National Referral Hospital. Twenty-five GGR researchers, twenty REC members, and thirty-eight community members, participated in this study. Data were collected using in-depth interviews guides, and Focus group discussions. Data was analyzed thematically, using NVivo version 12 Plus. Study findings Thirteen of the twenty-five GGR researchers had conducted CE in their studies, seven REC members had ever reviewed GGR protocols, and all the community respondents had ever participated in GGR. The goal for CE was reported to depend on the type of GGR as either basic or applied. Planning for CE involved; defining the community and for GGR this includes individuals not directly involved in the research but share the study gene with participants; a bigger CE budget to cover extra costs in GGR. The conduct of CE was reported to mainly occur at sample collection stage, rarely at study conception, and had not occurred at the return of results stage. Implementation of CE involved; engaging leaders first to gain access and acceptance of the research in the community; having a genetic counsellor on the CE team to handle the social issues in GGR. Conclusion This study provides challenges and facilitators on the conduct of CE in GGR in Uganda. Measures including the building of capacity especially knowledge in both GGR and CE for all the stakeholders, and using this study findings to inform policy, regulation, and further research will potentially contribute to ethical CE in GGR in Uganda and similar research contexts. (shrink)

Background Technological change is impacting the work of health professionals, especially with recent developments in artificial intelligence. Research has raised many ethical considerations respecting clinical applications of artificial intelligence, and it has identified a role for professional regulation in helping to guide practitioners in the ethical use of technology; however, regulation in this area has been slow to develop. This study seeks to identify the challenges that health professionals face in the context of technological change, and whether regulators’ codes of (...) ethics and guidance are sufficient to help workers navigate these changes. Methods We conducted mixed methods research in Ontario, Canada, using qualitative content analysis of regulators’ codes of ethics and practice guidance (26 regulators, 63 documents analysed), interviews with 7 representatives from 5 health profession regulatory bodies, and focus groups with 17 healthcare practitioners across 5 professions in the province. We used thematic analysis to analyse the data and answer our core research questions. Results We find that codes of ethics focus more on general principles and managing practitioners’ relationships with clients/patients; hence, it is not clear that these documents can successfully guide professional practice in a context of rapid technological change. Practitioners and regulatory body staff express ambivalence and uncertainty about regulators’ roles in regulating technology use. In some instances, health professionals experience conflict between the expectations of their regulator and their employer. These gaps and conflicts leave some professionals uncertain about how to practice ethically in a digital age. Conclusions There is a need for more guidance and regulation in this area, not only for practitioners, but with respect to the application of technology within the environments in which health professionals work. (shrink)

Background The onset of hematological malignancies can lead to acute and critical situations. It can also result in adverse outcome despite the significant advancements made in their therapeutic management. In this context, advance care planning and, in particular, advance directives (AD) play an essential role. However, the use of AD in patients with malignant hematological conditions remains very rare. Material & methods The aim was to evaluate the perception of AD by hematologists. We conducted a national online survey in France. (...) All hematologist working in a hospital setting and treating malignant hemopathies were solicited. The questionnaire covered five areas: personal perception of AD; assistance in writing AD; patient information about AD; use of ADs; and demographic data. Results 318 hematologists (33.7% of the whole population), working in 103 different centers across France participated in the study. 72.6% (n = 231) of the respondents believed that AD could be beneficial for patient’s care. Only 32.7% talked about AD with their patients on a regular basis. The lack of utilization was correlated with the fear of creating anxiety for the patient (64.9%; n = 172) or for relatives (30.9%; n = 80), as well as the belief that AD were deemed inappropriate for their patients (57.8%; n = 145). 19.5% (n = 62) of responding hematologist offered their assistance to patients in writing AD. This proportion was higher in physicians who had previously worked in palliative care unit (35,6% vs. 16,8%, p = 0,0004). Conclusion The majority of the surveyed hematologist hold a positive opinion about AD. However, only a few discuss the matter with their patients. The fear of consequences for patients and relatives, particularly anxiety, remains the primary barrier to providing information about AD. (shrink)

Introduction Given the growing number of Alzheimer’s Disease and Alzheimer’s Disease Related Dementias (AD/ADRD) genomics research projects and the vulnerabilities of study participants, it is critical to evaluate the literature on the ethical challenges in such studies to ensure high ethical standards. Methods We conducted a systematic review of the literature on ethical issues in AD/ADRD genomics research. We searched Embase, PsycINFO, CiNAHL, Scopus, and Ovid Medline for empirical and normative papers published in peer-reviewed journals on the ethical issues involved (...) in conducting genomics research among persons with AD/ADRD. We used ethical principles from an existing framework as a priori codes to categorize the ethical issues and adapted another framework of Dementia Research Ethical Issues (DREI) as subcategories for our synthesis. We used the 2021 PRISMA guidelines to guide our study. Results We screened 5,509 papers and included 27 of these papers in the systematic review after deduplication, title, and full-text review. The papers contained 109 ethical issues that were mapped against 42 out of 75 relevant DREIs. The highest number of DREIs were mapped to “respect for persons and communities”, “favorable risk-benefit ratio”, “informed consent” and “scientific validity”. The least mapped principles to the DREIs were “fair participant selection”, “independent review”, “social value”, and “collaborative partnership”. Conclusion Our review showed that there is a dearth of literature on the ethical principles of “fair participant selection”, “independent review”, “social value” and “collaborative partnership” in genomics research on AD/ADRDs. It is difficult to draw firm conclusions from the distribution of attention paid to specific principles because these may only reflect the concerns of AD/ADRD genomics research ethicists in high-income countries. There is need for more research on the ethics of AD/ADRD genomics research in low and middle-income countries for a more balanced account of the important ethical considerations in this field. (shrink)

In this paper, we bring together Foucault's biography and oeuvre to explore key concepts that support the analysis of nurses' acts of resistance. Foucault reflected on the power relations taking place in health services, making his contribution especially useful for the analysis of resistance in this context. Over three decades, he proposed a nonnormative philosophy while concomitantly engaging in transgressive practices guided by values such as human rights and social justice. Hence, Foucault's philosophy and public activism are an apparent contradiction, (...) but we argue that when analysed together they allow for a different understanding of his work. We describe the evolution of the concept of resistance in Foucault's work, supported by the approaches of Brent Picket (1996) and Miguel Morey (2013). Foucault started his work considering the idea of transgressiveness as it connects to being at the margins of society. He then spent considerable time elaborating the concept of power and identifying resistance strategies as forms of power exercise. In doing so, he considered that people engage with social change from multiple positions, including limited desire for change, fomenting reforms, or engaging in everyday revolutionary acts. As he further elaborated on power relations and defined resistance, Foucault asserted that resistance involves both repressive and productive dimensions of power, governance of biological life, state governance, and deliberate practices of illegalisms. Finally, Foucault shifted his attention to the freedom of ethical subjects, proposing the use of counter‐conduct and counter‐discourses to speak truth against oppression. Such framework offers a comprehensive lens for analysing nurses' acts of resistance within the complexities of the healthcare system and in society. In summary, Foucault's conceptual framework on resistance expands the role of nurses, to understand them not only as caregivers, but also as political agents capable of confronting and transforming oppressive institutional practices. (shrink)

Low parental awareness and knowledge about newborn screening have been identified as a public issue. This study explored Chinese parents’ self-evaluation of awareness, knowledge, and methods of receiving information about newborn screening. Using convenience sampling, we included 614 respondents who were expectant parents or parents of children aged 0-3 years. Our self-made questionnaire comprised four sections: sociodemographic characteristics, self-evaluation of awareness, detailed knowledge about newborn screening, and practical and expected methods of receiving newborn screening information. We found that 72.9% of (...) participants were classified as aware of newborn screening. However, only 14.2% of the participants received a passing score on the newborn screening detailed knowledge questions. Knowledge level about newborn screening was significantly associated with gender (P <.001), age (P <.05), education level (P <.05), residence (P <.05), family income (P <.05), and number of children (P <.05). The knowledge acquisition about newborn screening mainly came from hospital-related training (62.1%). Additionally, nearly half of the respondents (48.0%) expressed a preference for learning more about newborn screening through social media platforms, such as WeChat. While the majority of expectant or new parents were aware of newborn screening, only a minority had a thorough understanding of it. Various sociodemographic factors were associated with the level of parental knowledge about newborn screening. It is recommended to use hospital lectures or social media initiatives to educate parents in China. (shrink)

Promoting ethical medical practices and preserving human rights principles require an understanding of patient rights. Studies show varying awareness levels among patients regarding their rights. This study aims to assess the level of awareness among patients in Palestine about their rights and the compliance of healthcare professionals. A cross-sectional study was conducted between November 2023 and January 2024 in the Northern West Bank cities. Data collection was conducted by three trained medical students utilizing an interviewer-administered questionnaire. The association between participant (...) characteristics and awareness was assessed using the Chi-square test, followed by a multivariate regression analysis to control for confounding variables. Of 400 patients surveyed, 47.0% had good awareness of their rights. Multivariate analysis showed that awareness was associated with patients in the age group of 18–30 years and 46–60 years, having private insurance, more prior hospitalizations, non-governmental settings, and prior charter awareness. Awareness was highest for respectful care and lowest for staff introductions. Non-governmental facilities performed better than governmental on explaining procedures, alternatives, and costs, though both settings scored highly on non-discrimination and consent. Our findings underscore global gaps in ensuring adequate patients’ rights awareness and implementation, with over half exhibiting inadequate knowledge. Significant deficiencies exist in involving patients in decision-making, informing about procedures/costs, and providing accessible complaint mechanisms, particularly in governmental facilities. Comprehensive, culturally-appropriate initiatives involving multisectoral collaborations are crucial to drive substantive reforms translating patient-centered care principles into consistent practice worldwide. (shrink)

In 2021, a survey was conducted among doctors and nurses at Landspítali Iceland University Hospital (LIUH) regarding their views on medical assistance in dying (MAID) and the underlying arguments, the inclusion criteria and modality of implementation. Surveys on identically defined study groups in 1995 and 2010 were used for comparison. The survey was sent to 357 doctors and 516 nurses working at LIUH. It included seven questions and several subquestions. Participants’ answers were compared by profession, age group, and specialisation status. (...) Descriptive and inferential statistics were used. A total of 135 doctors (38% response rate) and 103 nurses (20% response rate) answered the survey, representing 27% of the study group. A total of 145 (61%) participants were positive about MAID, with the most common argument being patient autonomy. The 95% margin of error for this view was ± 6.2%. Compared to 19% in 2010, support for MAID had tripled in 2021 (p < 0.05). Approximately 18% of participants did not support MAID of any kind, mostly due to arguments regarding preserving life or inconsistencies with the role of health care professionals. Finally, 19% of participants were uncertain of their views towards MAID, mostly due to the high level of complexity of the matter. Compared to previous surveys, a large increase in positive attitudes towards MAID was observed among this study population. The results revealed the reasons for participants’ attitudes; weighing patients’ dignity/autonomy against professionals’ duty to “not to kill”/palliate and showing some differences between professions. (shrink)

Recently, the concept of expanded terminal sedation emerged to describe using sedation at the end of life in cases beyond the usual use. Using this sedation could be a stressful ethical encounter for healthcare providers. In this paper, we describe a case of a Muslim palliative care nurse who cared for a patient with cancer who requested expanded terminal sedation. The palliative care nurse described that his initial response to the expanded terminal sedation order was refusing to start the sedation (...) because he believed the patient was not terminally ill and was concerned about killing him, which is prohibited according to his religious beliefs. Further, the nurse perceived the patient’s psychological distress and his verbalization of wishing to die peacefully as a concealed request for euthanasia, especially since he was not imminently dying. Finally, the nurse reported being frustrated and uncertain about the care, especially since he did not receive appropriate psychological counseling from professional personnel. any case beyond the usual conditions for terminal sedation should be carefully examined, especially when nurses’ religious beliefs or moral values contradict it. If sedation should be administered, adequate preparation of healthcare providers should be arranged, including discussing with them the goals of care and the rationale for sedation before and after initiating it. Generating a policy for conscientious objections, allowing nurses to express their own emotions and concerns in a supportive environment are suggested approaches to preserve their wellness. (shrink)

The most well-known goal of non-invasive prenatal testing (NIPT) is still to determine whether or not a fetus has trisomy 21. Since women often terminate the pregnancy upon a positive result, there is concern that the use of NIPT contributes to discrimination against persons with disabilities. If this concern is justified, it could have an impact on the wider social acceptability of existing testing practices and their potential further expansion. This paper demonstrates four different versions of the discrimination worry, indicates (...) how international policy papers have reacted to them, and identifies the ethically most relevant feature of the concern. (shrink)

Background To identify and to summarize challenges related to the informed consent process for research completed during humanitarian emergencies. Methods Using relevant search terms, a search of 5 databases was completed, without language, date, or study type restriction. Studies were screened for inclusion, with eligible studies being those that were relevant to the informed consent process for research studies completed in humanitarian emergencies. A Grounded Theory Analysis was completed to identify themes and subthemes. Results Review identified 30 relevant studies. We (...) identified 11 challenges (lack of trust, therapeutic misconception, reduced capacity, security and privacy concerns, harmful research, power differential, literacy, language/local and cultural context, researcher burden and re-evaluation of ongoing trials) and 7 strategies (engage local research communities, use alternative to standard written consent process, modify traditional process of research ethics board review, dynamic consent, training of research staff, mandating transparency of commercial interests, and mandating reporting of informed consent process in all publications) to confront the challenges. These challenges and strategies were unique to the informed consent process in research conducted during humanitarian emergencies. Conclusions This scoping review identified an evidence-based guide for researchers and research ethics boards to perform ethical informed consent procedures in humanitarian emergencies. Trial Registration This trial was not registered as scoping reviews can not be registered as per updated PROSPERO guidelines. (shrink)

Background Research in children is essential for them to benefit from the outcomes of research but involvement must be weighed against potential harms. In many countries and circumstances, medical research legally requires parental consent until the age of 18 years, with poorly defined recommendations for assent prior to this. However, there is little research exploring how these decisions are made by families and the ethical implications of this. Aim To explore key ethical debates in decision-making for participation of children and (...) adolescents in a human papillomavirus (HPV) vaccine trial. Methods Semi-structured interviews were undertaken with Tanzanian girls (aged 9–16 years) who had participated in an HPV vaccine trial (n = 13), their parents or guardians (n = 12), and girls together with their parents (in paired parent-child interviews) (n = 6). The interviews were analysed using thematic analysis. Interview data came from a qualitative acceptability study undertaken as part of the Dose Reduction Immunobridging and Safety Study of Two Human Papillomavirus (HPV) Vaccines in Tanzanian Girls (DoRIS) trial. Results Girls and parents desired collaborative decision-making, with parents ultimately making the decision to consent. However, girls wanted a larger part in decision-making. Decisions to consent involved many people, including extended social networks, the trial team, media outlets and healthcare professionals and this resulted in conflicts to be negotiated. Deciding where to place trust was central in participants and parents considering decisions to consent and overcoming rumours about trial involvement. Conclusions Existing models of decision-making help to understand dynamics between parents, adolescents and researchers but neglect the important wider social impacts and the fundamental nature of trust. Children’s roles in discussions can be evaluated using the principles of consent: autonomy, freedom and information. Concepts such as relational autonomy help to explain mechanisms families use to negotiate complex consent decisions. Whilst interviewees supported the maintenance of legal parental consent, researchers must design consent processes centring the child to ensure that whole family decision-making processes are supported. (shrink)

The COVID-19 pandemic generated overflow of healthcare systems in several countries. As the ethical debates focused on prioritisation for access to care with scarce medical resources, numerous recommendations were created. Late 2021, the emergence of the Omicron variant whose transmissibility was identified but whose vaccine sensitivity was still unknown, reactivated debates. Fears of the need to prioritise patients arose, particularly in France. Especially, a debate began about the role of vaccination status in the prioritisation strategy. The Ethics Committee (EC) of (...) the University Hospital of Bordeaux (UHB), France, identified prioritisation criteria in the literature (some recommended, such as being a healthcare worker (HCW) or having consented to research, while others were discouraged, such as age with a threshold effect or vaccination status). A survey was sent within the institution in January 2022 to explore frontline physicians' adherence to these prioritisation criteria. The decision making conditions were also surveyed. In 15 days, 78/165 (47.3%) frontline physicians responded, and more widely 1286/12946 (9.9%) professionals. A majority of frontline physicians were opposed to prioritising HCWs (54/75, 72%) and even more opposed to participating in research (69/76, 89.6%). Conversely, the results were very balanced for non-recommended criteria (respectively 39/77, 50.7% and 34/69 49.3% in favour for age with a threshold effect and for vaccination status). Decisions were considered to be multi-professional and multi-disciplinary for 65/76, 85.5% and 53/77, 68.8% of frontline physicians. Responders expressed opposition to extending decision-making to representatives of patients, civil society or HCWs not involved in care. Prioritisation recommendations in case of scarce medical resources were not necessarily approved by the frontline physicians, or by the other HCWs. This questions the way ethical recommendations should be communicated and discussed at a local scale, but it also questions these recommendations themselves. The article also reports the experience of seeking HCWs opinions on a sensitive ethical debate in a period of crisis. (shrink)

The concept of resistance in nursing has been garnering more interest in the last few years, with emerging focus on working conditions, power differentials in clinical settings, health inequities, and planetary health concerns. As a result, it's important to identify what is being resisted, and what is the purpose of the resistance carried out. In whatever way resistance is referenced in nursing, outright or not, it is our contention that it's in response to the same underlying cause, barring some local (...) and contextual variations, which we refer to as ‘the Beast’, where the real catastrophe is societal, and is ‘existential, affective and metaphysical’. It therefore seems coherent to consider this macro catastrophe from an ontological point of view, that is, from the standpoints of ‘being’ in relation to the world, which necessarily refers to specific ways of apprehending reality. In this article, we therefore present two ontologies ‐ antagonistic in every respect, to better situate resistance in nursing in a larger ecosystem. Using the Invisible Committee's book and call to actionTo our friends, this is our modest contribution to celebrate resistance, to help equip fellow nurses to better organise and strategize in the face of incessant growth and too often undesirable change in healthcare. (shrink)

Social justice is consistently upheld as a central value within the nursing profession, yet there are persistent inconsistencies in how this construct is conceptualized, further compounded by a lack of empirical inquiry into how nurses enact social justice in everyday practice. In the current context in which structural inequities are perpetuated throughout the health care system, and the emergency department in particular, it is crucial to understand how nurses understand and enact social justice as a disciplinary commitment. This research examines (...) how nurses' talk and institutional texts discursively construct social justice within the institutional context of the emergency department, and how such discourses shape the enactment of social justice within nursing practice. Guided by Iris Marion Young's theorizing of distributive and systemic social justice paradigms, this Foucauldian discourse analysis draws on emergency department nurses' talk (N = 25 interviews) and institutional documents (N = 27) as key texts that visibilize dominant and excluded discourses of social justice within the institutional context of the emergency department, and implications for how social justice is enacted through nursing practices. This analysis identified one overarching discursive pattern, in which social justice was discursively constructed through a hegemonic distributive paradigm, yet also resisted through nurses' conceptualization and enactment of a systemic social justice paradigm that facilitated their recognition and remediation of inequities. This central discursive pattern is explored through three exemplars of nurses' enactment of social justice as resistance: triage, harm reduction, and care planning. Findings from this analysis demonstrate that while a hegemonic distributive paradigm has dominated conceptualizations of social justice within nursing, a re‐construction of social justice through a systemic paradigm may guide nurses in enacting practices that remediate inequities in health and health care. (shrink)