Medical Ethics

The ethics committee has the responsibility to comply with the rules and guidelines regarding oversight of all human research activities, particularly when the research study involves vulnerable people. It also has the role of educating researchers on ethical issues, scientific truthfulness, preventing misconduct and conflicts of interest. In our study we evaluate and benchmark the function of the local ethical committees across the country from the researchers point-of-view. We employed an online IRB-RAT survey to measure perspectives of investigators towards IRB (...) functions dealing with fairness issues, services, bias, and competences and upholding the rights of the human participants. Two responses were recorded: first shows how important an IRB function is for the investigator in his work, second shows how researchers rate their IRBs in being descriptive in that specific function. The difference of these two scores represent the outcome. We had 179 participants, 166(94%) researchers/research coordinators, and 13(7.2%) IRB members, 94 (53%) participants had been working in the research field for more than 11 years, and the majority 163(90%) revealed that they had IRB contact. The largest gap between actual rating and ideal was observed for the item “An IRB that requires that its chair be an experienced investigator” with a score difference of 1.53. In contrast, the smallest score difference was for the item “Considering the protection of human participants,” which had a score of 0.51. According’s to researchers point of view; IRBs respect researchers, view human protections as a primary role, do not allow personal bias, maintain accurate records and take timely action whenever misconduct is reported. Further collaborations are needed to enhance IRB performance and to engage researchers in more productive communication with their IRBs. (shrink)

The purpose of this paper is to present the theoretical and philosophical assumptions of the Nursing Manifesto, written by three activist scholars whose objective was to promote emancipatory nursing research, practice, and education within the dialogue and praxis of social justice. Inspired by discussions with a number of nurse philosophers at the 2008 Knowledge Conference in Boston, two of the original Manifesto authors and two colleagues discussed the need to explicate emancipatory knowing as it emerged from the Manifesto. Our analysis (...) yielded an epistemological framework based on liberation principles to advance praxis in the discipline of nursing. This paper adds to what is already known on this topic, as there is not an explicit contribution to the literature of this specific Manifesto, its significance, and utility for the discipline. While each of us have written on emancipatory knowing and social justice in a variety of works, it is in this article that we identify, as a unit of knowledge production and as a direction towards praxis, a set of critical values that arose from the emancipatory conscience-ness and intention seen in the framework of the Nursing Manifesto. (shrink)

Residents who do not internalize professional values may not be a good fit for their specialty and compromise the quality of their patient care. Research aimed at recognizing residents’ shortcomings in professionalism may help to prevent future shortcomings towards patients. The aim of this study was to increase insight into residents’ shortcomings in medical professionalism in light of professional values relevant within residency training. We analyzed all law cases from the Dutch national conciliation board from 2011 to 2020 on the (...) unprofessional behaviors described. During the period investigated, 61 dismissed residents challenged their dismissal. In 39 of 61 cases (64%), the program director named unprofessional behavior(s) as (one of the) reasons for dismissal. The most prevalent deficit of residents deemed unprofessional was poor self-awareness (80%); less prevalent deficits were: shortness of engagement and dishonest and disrespectful behavior (31% or less). We describe perceived unprofessional behavior in residency, which was not about exceptional or abominable behaviors. For the most part, these behaviors concerned the accumulation of remediation-resistant day-to-day underperformance, discrediting trust and professional reliability. This finding encourages dedicated longitudinal assessment of professionalism and fuels the ethical debate about required professional values in hospital care. (shrink)

Aim To carry out a detailed study of existing positions in the French public of the acceptability of refusing treatment because of alleged futility, and to try to link these to people’s age, gender, and religious practice. Method 248 lay participants living in southern France were presented with 16 brief vignettes depicting a cancer patient at the end of life who asks his doctor to administer a new cancer treatment he has heard about. Considering that this treatment is futile in (...) the patient’s case, the doctor refuses to prescribe it. The vignettes were composed by systematically varying the level of four factors: likelihood of a positive effect, painfulness to the patient of the treatment, cost of the treatment, and attitude of the family. Results Five main positions were identified. For 10%, refusing treatment was almost never acceptable. 35% judged acceptability in line with the level of painfulness. 19% judged acceptability consistent with an interaction between the painfulness of treatment and likelihood of positive effect. For 30% it was either almost always acceptable or always acceptable. 5% did not take a position. Conclusion A range of positions regarding the acceptability of refusing to provide treatment on the basis of perceived futility was observed. These positions have been analyzed in terms of what physicians and medical ethicists would see as the four principles of medical ethics. This description of lay people’s positions in terms of the principles of medical ethics present clinicians with a conceptual tool to improve communication and shared decision making. (shrink)

Introduction Despite the existing reports on mistreatment and disrespectful maternal care, few studies have investigated interventions to mitigate this issue. The present study aims to assess the impact of consulting midwives on maternal rights charter on perception of respectful maternity care and postpartum blues among postpartum women in two hospitals in southern Iran. Methodology This quasi-experimental study was conducted on 437 postpartum women (217 mothers before the intervention and 220 mothers after the intervention) and 44 midwives working in the maternity (...) ward of two hospitals affiliated to Bushehr University of Medical Sciences in 2023–2024. The hospitals were randomly divided into control and intervention groups. The mothers and midwives were selected using convenience and census sampling methods, respectively. Initially, the first sampling phase of postpartum women was conducted. Then, midwives in the intervention group received consultation on patient rights charter in groups of 3–4 individuals over three sessions. After the intervention, the second phase of sampling of postpartum women was conducted. Data collection tools included questionnaires assessing women’s perception of respectful maternity care and postpartum blues. The data were analyzed using descriptive and analytical statistical tests in SPSS 20.0. Results After performing the intervention on midwives, the mean score of postpartum respectful maternity care from the perspectives of the mothers in the intervention and control hospitals were 91.08 ± 5.51 and 68.34 ± 10.81 respectively (P < 0.001). Also, the mean scores of postpartum blues in the intervention and control hospitals were 12.88 ± 4.66 and 14.85 ± 5.94 respectively (P = 0.007). Multivariable linear regression analysis revealed that consulting with midwives regarding the Maternal Rights Charter, led to an increase in respectful maternity care (β coefficient = 0.780, 95% C.I. = 19.796). ~ 24.541) and decreased postpartum blues (β coefficient = -0.172, 95% C.I. = -3.318 ~ -0.390) from the perspectives of the mothers. Conclusion Consulting midwives on patient rights charter was positively correlated with mothers’ perception of respectful maternity care and negatively correlated with postpartum blues, indicating the positive effect of intervention on increasing women’s satisfaction and reducing postpartum blues. It is recommended that this consultation be included in midwives’ continuing education programs. Clinical trial number Not applicable. (shrink)

Background Thailand has made significant progress in malaria control efforts in the past decade, with a decline in the number of reported cases. However, due to cross-border movements over the past 5 years, reported malaria cases in Thailand have risen. The Malaria Infection Study in Thailand (MIST) involves deliberate infection of healthy volunteers with Plasmodium vivax malaria parasites, and the assessment of the efficacy of potential vaccine and drug candidates in order to understand acquired protection against malaria parasites. Methods This (...) paper drew from ethics and social science qualitative study called MIST-ETHICS embedded within the MIST studies. MIST-ETHICS aimed to describe and understand the experiences, perceptions and ethical considerations of the MIST studies. Data were obtained from semi-structured interviews and a focus group discussion. A total of 46 participants participated in MIST-ETHICS. Results Three major themes emerged: experiences and perceptions of MIST, reasons for joining MIST, and ethical considerations. We found that although compensation was a motivation for participation, this was secondary to it being beneficial to self (health checks; link to health networks; building merit) and others (medical research contribution; altruism). Participants expressed varied opinions regarding the requirement of a university degree as one of the inclusion criteria for MIST. Conclusions Our study revealed widespread concerns about long-term health effects and safety. Ethical considerations, including obtaining valid informed consent and ensuring participant inclusivitiy, were deem essential. Despite some debate regarding eligibility criteria, most participants agreed that the informed consent process was robust, accompanied by a strong sense of responsibility to contribute to the greater good. We emphasize the importance of continuously gathering participants’ feedback for quality control, such as improving information materials to clarify the purpose of initial phases, their contributing to later phases, and the rationale behind each selection criterion. Trial registration This manuscript is part of the clinical trials registered under ClinicalTrials.gov IDs NCT04083508 (MIST1) registered on 5 Sep 2019 and NCT05071079 (MIST2) registered on 28 July 2021. However, the manuscript pertains to a qualitative study that does not require trial registration. (shrink)

Background Nigeria is an emerging hub of biomedical research, requiring additional trained bioethicists for ethical oversight of research studies. There are currently two graduate-level health research ethics programs in Nigeria. However, both are in the southern part of the country and no such training programs exist in the north. Strengthening the health research ethics skills and knowledge of Nigerian researchers across the country is necessary given the growing genetics research infrastructure. Methods To inform the creation of a Master of Science (...) in Health Research Ethics program in northern Nigeria, we conducted a needs assessment comprised of semi-structured interviews with nine Nigerian bioethics experts. We used the Interpretative Phenomenological Analysis (IPA) method to analyze interview transcriptions. Two authors independently read and coded each respondent’s transcript to identify emergent themes that represented each respondent’s answers. Within these overarching themes, the data points were grouped into subthemes. Results Four primary themes emerged with ten subthemes. Respondents believed that the program can fill a gap and strengthen capacity in health research ethics. They emphasized that the curriculum should be developed with an interdisciplinary lens and locally contextualized, and that students should be taught how to think critically through ethical scenarios. Respondents stressed that program leaders should recruit faculty and students locally who have the bandwidth to participate in the program. Finally, respondents noted the program should have university support to be sustainable. Conclusion Our findings will guide the creation of a master’s degree program that aims to build capacity in health research ethics in northern Nigeria and enhance the country’s growing prominence in global biomedical research. Through our needs assessment, we identified structural and content factors that can guide us in leveraging the strengths of the local institution and leaders in health research ethics while mitigating challenges in establishing this program. (shrink)

Little is known about how people living with HIV should be engaged in the decision-making process for returning individual pharmacogenomic research results. This study explored the role people living with HIV want to play in making decisions about whether and how individual results of pharmacogenomic research should be presented to them. A convergent parallel mixed methods study was conducted, comprising a survey of 221 research participants and five deliberative focus group discussions with 30 purposively selected research participants. Most participants (122, (...) 55.2%) preferred the collaborative role, 67 (30.3%) preferred the active role and 32 (14.5%) preferred the passive role. Factors that significantly influenced preference for an active role compared with a collaborative role were marital status (OR: 0.282, p = 0.013), research experience (OR: 4.37, p = 0.028), and religion (OR: 2.346, p = 0.041). The reasons proffered for the active role included prior experience with antiretroviral treatment and increased exposure to research activities. The reasons given for preferring the passive role included limited level of awareness about the interaction between patients’ genes and drugs, trust in researchers to make the right decision, and fear of making decisions with harmful implications. Overall, findings from our study show that participants want to be engaged in the decision-making process. Research teams ought to provide adequate and simple information about the pharmacogenomic research and implications of the results to support participants’ informed decisions. (shrink)

Background There is growing consensus in favor of returning individual specific research results that are clinically actionable, valid, and reliable. However, deciding what and how research results should be returned remains a challenge. Researchers are key stakeholders in return of results decision-making and implementation. Multi-omics data contains medically relevant findings that could be considered for return. We sought to understand researchers' views regarding the potential for return of results for multi-omics data from a large, national consortium generating multi-omics data. Methods (...) Researchers from the Molecular Transducers of Physical Activity Consortium (MoTrPAC) were recruited for in-depth semi-structured interviews. To assess understanding of potential clinical utility for types of data collected and attitudes towards return of results in multi-omic clinical studies, we devised an interview guide focusing on types of results generated in the study for hypothetical return based on review of the literature and professional expertise of team members. The semi-structured interviews were recorded, transcribed verbatim and co-coded. Thematic trends were identified for reporting. Results We interviewed a total of 16 individuals representative of 11 sites and 6 research roles across MoTrPAC. Many respondents expressed positive attitudes regarding hypothetical multi-omics results return, citing participant rights to their data and perception of minimal harm. Ethical and logistical concerns around the return of multi-omics results were raised, and they often mirrored those in the published literature for genomic return of results including: uncertain clinical validity, a lack of expertise to communicate results, and an unclear obligation regarding whether to return multi-omics results. With the exception of privacy concerns, respondents were able to give examples within multi-omics of how each point was relevant. Further, researchers called for more guidance from funding agencies and increased researcher education regarding return of results. Conclusion Overall, researchers expressed positive attitudes toward multi-omic return of results in principle, particularly if medically actionable. However, competing ethical considerations, logistical constraints, and need for more external guidance were raised as key implementation concerns. Future studies should consider views and experiences of other relevant stakeholders, specifically clinical genomics professionals and study participants, regarding the clinical utility of multi-omics information and multi-omics results return. (shrink)

Nursing theory should reflect the pluralism inherent in nursing practice. Nurses routinely enact different kinds of knowledge in combination to achieve good nursing care. Nursing theoretical and philosophical literature includes many attempts to engage with epistemological pluralism. In this paper, concepts from the work of Michel Serres are introduced as a contribution to the resources available to think pluralistically about nursing. Serres' work is valuable because he is a pluralist thinker, who uses different conceptual tools to explore the complexity of (...) human life, including topology, isomorphism, and the excluded third. Serres' terms are discussed with examples of application to nursing. An extendeddd example of addictions nursing is used to pull together different concepts applied to a complex and multilayered area of practice. (shrink)

Background Making appropriate end-of-life decisions in the intensive care unit (ICU) requires shared interprofessional decision-making. Thus, a decision-making climate that values the contributions of all team members, addresses diverse opinions and seeks consensus among team members is necessary. Little is known about religion’s influence on ethical decision-making climates. Therefore, this study aimed to examine the association between religious belief and ethical decision-making climates. Methods The study was a cross-sectional analytical observation study as a part of the prospective observational DISPROPRICUS study. (...) A total of 2,275 nurses and 717 physicians from 68 ICUs representing 12 countries in Europe and the US participated. All participants were asked which religion (if any) they belonged to and how important their religion (if any) was for their professional attitude towards end-of-life care. Perceptions of ethical decision-making climates were evaluated using a validated, 35-item self-assessment questionnaire that evaluates seven factors. Using cluster analysis, ICUs were categorised into four ethical decision-making climates: good, average (with nurses’ involvement at the end of life), average (without nurses’ involvement at the end of life) and poor. Results Of the 2,992 participants, 453 (15%) were religious (had religious convictions and found them important or very important for their attitude towards end-of-life care). The remaining 2,539 were non-religious (i.e. had religious convictions but assessed that they were not important for their attitude towards end-of-life care). When adjusting for country and ICU, the overall perception of the four ethical climates was associated with religious beliefs, with non-religious healthcare providers having more positive perceptions of the ethical climates compared to religious healthcare providers (p < 0.01). Within good climates, non-religious healthcare providers rated leadership by physicians (p < 0.01), interdisciplinary reflection (p = 0.049) and active decision-making by physicians (p = 0.02) as more positive compared to religious participants. In poor climates, religious healthcare providers had a more positive perception of the active involvement of nurses (p = 0.01). Within the other climates, no differences were found. Conclusions Overall perceptions of ethical decision-making climates were associated with religious beliefs, with non-religious healthcare providers generally having a more positive perception of the ethical climates than religious healthcare providers. (shrink)

Research into how existentially aware nurses and nursing interventions have highlighted the benefits to patients and patient outcomes. Less is known about how existentially based training affects nurses themselves. This project sought to understand if and how a training programme developed to improve nurses' knowledge of existential theory would affect their well‐being. Overall, despite challenges to recruitment, follow‐up and data collection, three key themes were developed from the data: (1) Things Are Difficult, (2) We Need More… and (3) Well‐Being Is (...) Personal. Existentialist philosophy can be an effective way of providing nurses with the tools to develop and express their own definition of well‐being. It can also be useful to healthcare systems and administrators seeking to find ways of reducing burnout and turnover among nursing staff. (shrink)

Metabolic Bariatric Surgery (MBS) has gained significant popularity over the past decade. Legally and ethically, physicians should obtain the patient’s voluntary and informed consent before proceeding with the surgery. However, the decision to undergo MBS is often influenced by external factors, prompting questions about their impact on the patient’s ability to choose voluntarily. In addressing this issue, the study focuses on two key questions: first, which factors influence MBS candidates during the decision-making process, and second, whether these influences undermine the (...) candidates' ability to make decisions voluntarily, according to theories of autonomy. The study employed a qualitative methodology, conducting 21 in-depth semi-structured interviews with adults who had undergone bariatric surgery. The conclusions were drawn from an inductive analysis of the interview data conducted using a grounded theory approach, and by applying theories of autonomy to the empirical findings. Our study indicates that interviewees were exposed to different external influences, which had diverse effects on the interviewees' decision to undergo MBS. Category 1 influences included intentional attempts to induce people, through arguments and reason, to accept the attitudes advocated by the persuader in support of the surgery. Applying theoretical accounts of autonomy to these influences suggests that they did not compromise the interviewees’ autonomy. Category 2 influences included threats made by a physician or a family member. These influences were found to undermine autonomy. Category 3 influences included emotional manipulation, informational manipulation, and the construction of medical and social norms. Manipulations and norms were experienced differently by different interviewees, and their impact on autonomy varies depending on the theoretical framework applied. Acknowledging that the influences exerted on MBS candidates may undermine their ability to make autonomous decisions regarding surgery, we suggest reformulating the duties that apply to medical practitioners with respect to informed consent to MBS. Medical practitioners who discuss the option of MBS with candidates should be aware of the various factors that influence this choice, and actively promote the candidates’ ability to make autonomous decisions. (shrink)

Medical assistance in dying (MAiD) was legalized in Canada following the Carter v. Canada ruling of 2015. In spite of legalization, the ethics of MAiD remain contentious. The bioethical literature has attempted to differentiate MAiD from withdrawing life-sustaining treatment (WLT) in an effort to examine the nature of the moral difference between the two. However, this research has often neglected the firsthand experiences of the clinicians involved in these procedures. By asking physicians if they perceive the major bioethical accounts as (...) clinically useful, we seek to distinguish between aspects of the contemporary bioethical landscape which are useful at the bedside and those which are divorced from the realities faced by clinicians. We applied a qualitative descriptive approach to explore physicians’ experiences and bioethical distinctions in providing MAiD and WLT. Semi-structured interviews were conducted with 21 physicians, and the transcripts were thematically analyzed to identify common patterns and divergences in their perspectives. Three core themes were found: (1) consensus on MAiD’s moral equivalence with WLT despite differences between the practice, (2) discord regarding the use of the term ‘killing’, and (3) disjuncture between bioethical debates and practice. Theme 1 comprised of three sub-themes: (1.1) no moral difference between MAiD and WLT, (1.2) physician versus underlying medical condition as cause of death, and (1.3) relief of suffering. In order to have practical utility for clinical practice, it is essential for bioethicists to engage in dialogue with patients and their medical providers pursuing MAiD or WLT. Theoretical debates that are divorced from the realities of terminal illness do not assist physicians with navigating the ethical terrain of ending a patient’s life. This research captures meaningful accounts regarding MAiD and WLT that is rooted in the lived experience of the providers of these services in order for bioethical debates to have substantive impact in clinical practice and in legislation surrounding future health policies. (shrink)

Moral injury is a significant issue for healthcare workers, often stemming from exposure to ethical dilemmas and distressing events. This study aims to explore the relationship between moral injury and healthcare workers’ career calling, using the job demands-resources model as a theoretical framework. The goal is to understand how moral injury affects healthcare workers’ sense of purpose and vocation and identify factors that may mitigate this impact. A cross-sectional survey was conducted with a sample of 506 Chinese healthcare workers. The (...) study used self-report questionnaires to assess moral injury, authentic self-expression, self-compassion, ethical leadership, and career calling. Path analysis was used to test the proposed mediating and moderating relationships within the job demands-resources model. Moral injury has a negative effect on healthcare workers’ career calling. This effect is mediated by authentic self-expression – the inability to openly discuss moral distress weakens the sense of purpose. Self-compassion and ethical leadership buffer against the negative impact of moral injury on career calling. This research contributes to the understanding of moral injury and career calling in healthcare workers, with practical implications for safeguarding healthcare professionals’ well-being and commitment to their vocation. (shrink)

Exploring the spiritual cognition of human organ donation registration volunteers, aiming to provide new ideas for promoting the development of organ donation through this perspective. This qualitative research was conducted following the conventional content analysis method. 10 registered volunteers for human organ donation were selected from July to December 2023 for face-to-face semi-structured interviews. Snowball sampling was employed to select the participants. In-depth semi-structured interviews were conducted for data gathering. Theoretical saturation was achieved through 10 interviews. Colaizzi phenomenological 7-step analysis (...) method was used to analyze the interview content. The spirituality of registered volunteers for human organ donation can be summarized into three themes and seven sub themes: ① Spiritual Understanding (Love & Life Extension, Dedication to society, Death elevates life); ② The Supporting Role of Spirituality (Become a spiritual motivation for a better life, self-transcendence ); ③ The Spiritual Emotional Value of Organ Donation (Sense of accomplishment and pride, Sense of complexity and ambivalence). The willingness to donate organs is closely related to spirituality. By understanding the spirituality of this group, it is possible to take an important step in promoting the development of organ donation. (shrink)

A variety of cognitive biases are known to compromise ethical deliberation and decision-making processes. However, little is known about their role in clinical ethics supports (CES). We searched five electronic databases (Pubmed, PsychINFO, the Web of Science, CINAHL, and Medline) to identify articles describing cognitive bias in the context of committees that deliberate on ethical issues concerning patients, at all levels of care. We charted the data from the retrieved articles including the authors and year of publication, title, CES reference, (...) the reported cognitive bias, paper type, and approach. Of an initial 572 records retrieved, we screened the titles and abstracts of 128 articles, and identified 58 articles for full review. Four articles were selected for inclusion. Two are empirical investigations of bias in two CES, and two are theoretical, conceptual papers that discuss cognitive bias during CES deliberations. Our main result first shows an overview of bias related to the working human environment and to information gathering that concerns different types of CES. Second, several determinants of cognitive bias were highlighted. Especially, stressful environments could be at risk of cognitive bias, whatever the clinical dilemma. Whether a need for a better taxonomy of cognitive bias in CES is highlighted, a proposal is made to focus on individual, group, institutional and professional biases that can be present during clinical ethics deliberation. However, future studies need to focus on an ecological evaluation of CES deliberations, in order to better-characterize cognitive biases and to study how they impact the quality of ethical decision-making. This information would be useful in considering countermeasures to ensure that deliberation is as unbiased as possible, and allow the most appropriate ethical decision to emerge in response to the dilemma at hand. (shrink)

This article presents a conceptual analysis of the contemporary understanding of NURSING in Australia and proposes strategies for decolonisation. Through historical reflection and the lens of cultural safety and critical race theory, it examines some conditions which make up this concept, including “Florence Nightingale‐influenced practices,” “intellectual practitioners,” and “whiteness in nursing.” This analysis aims to identify conditions which we take to be necessary for the folk concept of NURSING to be satisfied and which result in negative outcomes. The article explores (...) why these conditions are plausibly included in this concept and possible objections to their inclusion. These conditions, and subsequently the concept of NURSING, are then critiqued. In this conceptual analysis of NURSING in Australia, we explore three conditions. By critically examining these conditions through the lens of cultural safety and employing decolonising methodologies, the article sheds light on the complex interplay of historical legacies, contemporary practices and potential negative outcomes within the nursing profession. The conclusions drawn propose a shift toward decolonisation, advocating for a cultural safety framework to address historical injustices and highlights possible ways in which one might amend the concept of nursing to be more inclusive of Aboriginal and Torres Strait Islander people. The need for this change is emphasised by the acknowledgement of historical conditions that perpetuated racism and hindered equitable healthcare. Ultimately, the article advocates for a comprehensive decolonisation of the concept of NURSING in Australia, urging the nursing profession to implement cultural safety for the overall well‐being of Aboriginal and Torres Strait Islander people. The authors of this article would like to acknowledge the people of the Dharawal and Dharug language group, who are the custodians of the unceded land we have worked on throughout this project. We would also like to acknowledge Aboriginal and Torres Strait Island people nationwide and warn them that some traumatic aspects of Aboriginal and Torres Strait Islander history are mentioned throughout this article. Always was, always will be, Aboriginal land. Two authors on this article identify as Aboriginal, while three do not. Two authors are registered nurses, one is an anthropologist, one is a philosopher and one is a historian. (shrink)

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)

Medical artificial intelligence (AI) systems are value-laden technologies that can simultaneously encourage and discourage conflicting values that may all be relevant for the pursuit of justice. I argue that the predominant theory of healthcare justice, the Rawls-inspired approach of Norman Daniels, neither adequately acknowledges such conflicts nor explains if and how they can resolved. By juxtaposing Daniels’s theory of healthcare justice with Axel Honneth’s and Nancy Fraser’s respective theories of justice, I draw attention to one such conflict. Medical AI may (...) improve the distribution of opportunity qua health while simultaneously mis-recognizing patients and thereby reducing their self-respect. I argue that justly resolving this conflict will at times require greater inclusion of those mis-recognized in deliberation about medical AI, and consider what such inclusion may entail. (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)