Technology, such as alert systems, can foster community engagement in locating missing persons with dementia and minimize potential harm. However, concerns arise about implications of public disclosure of missing individual’s personal information (such as age, photographs, physical descriptions, and medical conditions) within alert systems. Until now, there has been no review of these concerns, particularly in the Canadian context. Our study aimed to explore community members’ perspectives on the ethical and legal concerns associated with the release of personal information in (...) alert systems for missing persons with dementia. Using a qualitative descriptive approach, we conducted semi-structured interviews with 18 participants: people living with dementia, care partners, service providers, first responders, and experts in ethics, policy, and the law from Canada and the United Kingdom. We conducted a thematic analysis of the interview data to inductively explore ethical and legal concerns. Our findings identified the following concerns: Balancing safety and privacy, stigmatization, risk of victimization and abuse, and informed consent. There is a challenge of balancing safety with privacy due to the urgency of locating missing persons when sharing personal information publicly. Disclosure of personal information, such as cognitive impairment, can increase the risk of stigmatization, victimization, and abuse for both the missing individuals and their care partners. Unfortunately, conversations about alert systems and consent do not typically occur before someone goes missing, even though people living with dementia have the right to participate in these conversations. Alert systems can promote community involvement in locating missing persons with dementia but must balance safety and privacy concerns. Implementation of education and policies would mitigate stigmatization, victimization, and abuse. Early conversations with people living with dementia and their care partners to understand their preferences, along with an advance consent process, can help address consent concerns. Our framework, which emphasizes ethical and legal considerations, can guide policy, practice, and decision-making to support the autonomy of people living with dementia. Not applicable. (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)

Informed consent (IC) represents one of the fundamental rights of patients in healthcare. An essential aspect of the IC process is providing patients with equal access to information to enable them to make the right decisions. However, failure to obtain IC undermines patient autonomy, lowers patient satisfaction, increases risks, and negatively affects the patient’s trust in healthcare providers. This study aims to evaluate the surgical informed consent (SIC) process from the patient’s perspective both for emergency and elective surgeries in obstetrics/genecology (...) in Saudi Arabia. This is a quantitative cross-sectional study. The study population included all hospitalized female patients who had undergone obstetric or gynaecological surgeries, from February 2021 to March 2021. The total sample size was 156 female patients. Most of the participants were married (96.2%) and unemployed (80.1%). The most performed surgery was caesarean Sect. (84%). Most of the patients were satisfied with their SIC experience which represents over 85%. No significant difference has been found between the elective and emergency surgeries. However, person-in-charge of SIC administration and the time provided to sign the IC were deemed to be significant predictors. Based on the findings, it is recommended that physician take responsibility for the SIC administration rather than an unknown provider. It is also recommended to provide the patients with adequate time to understand the SIC. Furthermore, ensuring the availability of emotional support is critical for enhancing the patient experience. Not applicable. (shrink)

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)

Background As cultural contexts have gained increasing relevance in medical decision-making, the current mainstream definition of autonomy is insufficient. A viable alternative framework, relational autonomy posits that agents’ actions are influenced by and embedded in society and culture rather than occurring in isolation. To test the concept’s applicability, we examine whether Asian Americans in the study’s sample operationalize relational autonomy as a decisional approach in hypothetical scenarios about organ donation, a practice for which there is considerably lower enthusiasm compared to (...) other racial groups in the US. Methods A national sample of Asian American adults were recruited from a Qualtrics research panel. Participants completed a Think-Aloud interview containing scenarios in which they decide whether or not to: (1) become a registered donor at the motor vehicle department; (2) authorize organ donation for a close relative who unexpectedly died. The interview first elicited candid reactions to the scenarios, followed by probing participants’ rationale of their initial responses. Participants’ final decision to each scenario (whether or not to register; whether or not consent to surrogate authorization), as well as participants’ decisional approaches (individualistic vs. relational) were coded using the constant comparison method. Results The sample (n = 40) mirrored the largest proportions of Asian Americans in the US; the plurality identified as Chinese (35%), Filipino (27.5%) and Indian (25%). In response to the organ donor registration prompt, a majority of respondents (57.5%) expressed they would employ the mainstream decisional approach of individualistic autonomy, and 42.5% would make the decision with a relational approach. In contrast, when responding to the surrogate authorization prompt, the majority (77.5%) described a relational approach when making the decision, to preserve familial harmony and honor their cultural heritage. Conclusions Use of individualistic and relational autonomy frameworks are situational for some individuals. Participants acknowledged the impact of personal, cultural, and societal elements on their decisional approach. The concept of relational autonomy has utility through its versatility in complex decision-making events and by accounting for multiple stakeholders without privileging the autonomy of a single decision-maker over others. Clinical trial number Not applicable. (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)

With a growing global population of migrants, understanding the complex dynamics between healthcare providers and policy restrictions is crucial for ensuring equitable access to healthcare. The main objective of this qualitative study was to explore the ethical challenges faced by health care providers in the provision of health care to migrants. We conducted in –depth interviews with 11 healthcare providers, which were analysed using thematic analyse. Atlas ti software was used to analysis the data. Healthcare workers reported facing ethical challenges (...) as a result of not being able to provide medical care to migrant patients because healthcare policies deny them access to healthcare. These policies make it difficult for healthcare professionals to fulfil their duties in accordance with their oath. Failure to provide healthcare to migrant patients can cause moral distress for healthcare workers and affect their well-being. Reporting migrant patients to the police was mentioned as another ethical challenge, which is a breach of confidentiality. Several healthcare providers have developed strategies to address the limitations of migrants’ access to healthcare, including encouraging migrants to access healthcare from their home country and using private healthcare facilities. Health policies influence the way health care providers carry out their tasks, which can either positively or negatively impact access for vulnerable migrant groups. To address the challenges faced by healthcare providers in implementing their professional ethics, inclusive policies should be introduced, and human rights and ethics training should be provided, as well as ongoing dialogue to ensure that healthcare providers fulfil their professional obligations toward all migrant patients. (shrink)

Background Conflicts of interest (COIs) in healthcare research have received substantial attention over the past three decades. Although financial COI (FCOI) has an extensive literature, publications about non-financial COI (NFCOI) are comparatively rare. Disagreements surrounding the importance of NFCOIs in research and publication, including whether competing non-financial interests should even be considered COIs, present significant gaps in the literature. This lack of clarity prompted our literature review’s aim to determine the current consensus about how NFCOIs should be treated in healthcare (...) research and publication. Methods We searched the PubMed database using MeSH terms and keywords to identify articles published before November 6, 2023 about NFCOI in biomedical research and publication. We applied relevance, appropriateness, transparency, and soundness (RATS) criteria to develop a final dataset of 206 publications and reported using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) flow diagram. Qualitative and quantitative analyses revealed major themes and conclusions regarding consensus within the field. Results The literature centers around fundamental disagreements about (1) whether competing non-financial interests constitute COIs like FCOIs, (2) whether they need to be addressed in research, and (3) whether they should be managed with disclosure or with other strategies. Despite these disagreements, the balance of evidence and arguments suggests that (1) NFCOIs are meaningful conceptual entities like FCOIs [96%], (2) they require management [76%], and (3) disclosure is necessary but insufficient [55%] or necessary and sufficient [27%] as a management strategy. Conclusion The topic of NFCOI enjoys far less attention and consensus compared to FCOI’s robust body of literature developed over decades. We found general agreement about the relevance of NFCOIs and the need to address them, but not how to do so. Our results are consistent with Wiersma et al., the first review on this topic. Taken together, these reviews suggest a path forward for researchers, publishers, and healthcare professionals requiring new approaches for NFCOI management. (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)

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)

Background Nursing ethical decision-making ability is a core competency of nurses. However, no tool has been developed to measure the ethical decision-making ability of nurses in China. Therefore, we aimed to develop a nursing ethical decision-making ability scale (EDMAS) and assess its validity and reliability. Methods A literature review, qualitative study, and the Delphi method were employed to identify the most common ethical dilemmas and original scale items. A cross-sectional study was conducted to evaluate the items. The reliability and validity (...) of the scale were evaluated. Exploratory factor analysis (EFA) was employed to investigate the factor structure based on data from group 1 (N = 404). Confirmatory factor analysis (CFA) was employed to assess the construct validity based on the data from group 2 (N = 503). Convergent validity was evaluated using composite reliability (CR) and average variance extracted (AVE). Discriminant validity was assessed by analyzing the maximum shared variance (MSV). We invited 15 experts to evaluate the content validity of the EDMAS. This study was conducted between December 2021 and January 2023. Results We defined 4 nursing ethical dilemmas and 71 original items. We deleted 4 items during the screening process. Additionally, 3 items were deleted from the EFA. The EFA revealed that the EDMAS with 64 items had a four-factor structure (ethical sensitivity, motivation, judgment, and action), accounting for 56.05% of the total variance. The CFA revealed that χ 2 /df = 1.291, RMSEA = 0.024, CFI = 0.976, TLI = 0.974, NFI = 0.902, and IFI = 0.976. The CR values were between 0.945 and 0.964. The AVE values were between 0.583 and 0.588. The MSV values were between 0.533 and 0.572. The value of I-CVI varied from 0.867 to 1.000, and the S-CVI/Ave was 0.965. The Cronbach’s of the scale was 0.982. The test–retest reliability of the EDMAS was 0.982. Conclusion EDMAS is a reliable and valid tool for evaluating nurses’ ethical decision-making ability and enhancing its ability through ethics training programs. (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)

Research shows that the age of fathers at the time of conception is correlated with detrimental effect for the health of the future offspring. This situation raises ethical questions regarding the priority of the principle of reproductive autonomy of men of advanced age over the well-being of their future offspring. This problem leads to other normative implications such as the value of introducing limits to the use of medically assisted reproduction, and the development of public health interventions. For the moment, (...) this ethical reflection is mostly speculative and calls to open up the discussion. The aim of this research was to survey experts, working in related fields to the topic of advanced paternal age (APA), regarding the top priority ethical issues of this emerging subject. We recruited experts concerned by APA with backgrounds in health sciences, ethics, social work and reproductive medicine. We conducted a modified e-Delphi panel that lasted three rounds to build a consensual list of issues. The last round took the form of structured interviews exploring the results of the previous rounds. The top four issues according to the panel are: (1) Should APA be included as a criterion for prenatal genetic screening? (2) Should we raise awareness on reproductive health in relation to the age of fathers? (3) How can health-care providers support patients in the context of APA? (4) How can research inform the public without stigmatizing fathers of advanced age? These exploratory results suggest that the issues of how to inform various audiences properly on APA are important concerns for experts. Not applicable. (shrink)

Background In Belgium, termination of pregnancy after the first trimester is exclusively allowed on medical grounds. When faced with fetal or maternal health complications during pregnancy, patients typically turn to obstetricians for guidance on the diagnosis, prognosis, and available options. Patients’ decisions and their actual access to termination of pregnancy can be profoundly influenced by the quality of this counselling and the willingness of professionals to present termination as an acceptable option. This paper aims to explore the factors influencing obstetricians’ (...) acceptance of TOP requests after the first trimester of pregnancy. We subsequently analyze these acceptance dynamics from a multidisciplinary angle, incorporating ethical perspectives and a socio-legal exploration into how the interviewed health professionals experience, interpret, and apply the law. Methods We conducted an interview study with 23 hospital obstetricians who had prior experience with termination of pregnancy decision-making beyond the first trimester in Flanders, Belgium. Interviews, on average, lasted 1h30 and followed a semi-structured format guided by a topic guide. The transcripts were coded with NVivo software and subsequently thematically analyzed by a multidisciplinary research team to provide a comprehensive understanding of obstetricians’ acceptance of termination of pregnancy after the first trimester. Results Obstetricians’ acceptance of termination of pregnancy after the first trimester mainly depends on the presence of compelling clinical factors. Secondary factors, including patient/couple preferences, institutional and collegial processes, timing and viability, technical considerations, obstetricians’ ethical and professional values, the wider background of the patient/couple, and perception of alternatives, could sway decisions in the absence of compelling clinical factors. Conclusions Secondary factors help sway obstetricians’ decisions in favor of or against termination of pregnancy after 12 weeks when a request is characterized by inconclusive clinical factors. The multifactorial acceptance dynamics of obstetricians illustrate the limits of a strong emphasis on fetal interest argumentation. Moreover, they exhibit a degree of divergence and complexity absent from the Belgian Abortion Law. The presented typology of factors could stimulate and guide debates on legal reform and the importance that should be attributed to various factors in professional decision-making on termination of pregnancy. (shrink)

Background Moral distress, or the inability to carry out what one believes to be ethically appropriate because of constraints or barriers, is understudied in obstetrics and gynecology. We sought to characterize moral distress among Maternal-Fetal Medicine (MFM) fellows using a standardized survey. Methods We disseminated a national anonymized survey study of MFM fellows electronically regarding moral distress using a validated questionnaire with supplemental questions pertaining to specific challenges within MFM clinical care. Multivariable linear regression modeling was used to examine the (...) association between abortion restrictions, maternal mortality, and moral distress, controlling for demographic variables. Thematic analysis was performed for the free text responses elaborating upon moral distress and grouped by thematic elements. We hypothesized that training in states with more abortion restrictions and higher maternal mortality would be associated with higher moral distress scores. Results Among 245 total responses (61% response rate), 177 complete responses (44% complete response rate) were included for analysis. Most of our respondents identified as female (78.5%), White (71.8%), and training in urban programs (83.1%). 37.9% of respondents reported training in the Northeast, with the remainder of respondents evenly distributed across the United States. The mean score for the validated questions was 85.9 ± 48.8, with female gender identity associated with higher measures of moral distress on the validated portion of the questionnaire as compared to male gender identity (90.1 ± 49.2 vs. 70.4 ± 44.7, p < 0.05), whereas more advanced training was associated with higher measures of moral distress on the supplemental questions as compared to those less advanced in training (20.9 ± 11.8 vs. 28.5 ± 15.9 vs. 25.9 ± 15.6 for PGY-5 vs. PGY-6 vs. PGY-7 and PGY-8 combined, respectively, p < 0.05). After adjustment, higher measure of moral distress on the validated questionnaire was associated with training in states designated “Abortion restrictive” as compared to “Abortion most protective” (beta estimate 27.80 and p < 0.01). Of 34 free responses, 65% referred to limitations on abortion access and reproductive justice as causes of significant moral distress. Conclusion MFM fellows who identify as female reported higher measures of moral distress, as well as those training in states with more abortion restrictions. Among free text respondents, abortion restrictions underlie a significant proportion of moral distress. (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)

Background Involving children and adolescents (youth) living with HIV (YLWH) in research is critical for developing appropriate HIV care services and interventions. However, this vulnerable population may not adequately weigh risks against benefits when participating in research, forming an ethical concern, yet little is known about how YLWH perceive these risks and benefits. To inform research-related policies and procedures, we sought perspectives of Kenyan YLWH, their caregivers and subject matter experts (SMEs) on risks and benefits of participation in research in (...) a setting with a high burden of youth HIV infection. Methods We conducted a qualitative inquiry on identifying, enrolling, and protecting YLWH (age 10–24 years) in research using semi-structured interviews with YLWH involved in research, their caregivers, YLWH with no prior research experience, and other SMEs at the AMPATH care and research sites in western Kenya. Transcripts were thematically analyzed and emerging themes derived to characterize perspectives of each group on risks and benefits of engaging YLWH in research. Results Interviews were conducted with 40 YLWH (50% female; median age 17.5 years), 20 caregivers (70% female), and 39 SMEs [healthcare providers (N = 10), community leaders (N = 10) community advisory board members (N = 4), IRB experts (N = 5), clinical researchers (N = 6), social science researchers (N = 4) and laboratory experts (N = 1).] Participants in all groups identified accidental disclosure of HIV status, stigma and discrimination, risks of blood draws, mental health effects, and coercion due to study compensation as risks of research involvement. Benefits fell into 5 categories: clinical, informational, personal, future and community or household benefits. Benefits included access to health care, learning about HIV, gaining hope and community, improving HIV care, and reducing stigma. All participant groups largely held similar views; however, caregivers were the only group to identify misuse of study compensation as a risk, and YLWH less frequently cited clinical benefits. Conclusion These findings suggest that participants commonly cite indirect risks and benefits of research participation, yet these are often excluded from institutional guidelines for consent documentation. Researchers should consider including indirect risks and benefits, such as the risk of stigma or the benefit of gaining knowledge and community, to study documentation. (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)

Background During recent decades, providing patients with access to their electronic health records (EHRs) has advanced in healthcare. In the European Union (EU), the General Data Protection Regulation provides individuals with the right to check their data in registries such as EHRs. A proposal for a European Health Data Space has been launched, which will further strengthen patients’ right to have online access to their EHRs throughout Europe. Against these policy changes, scant attention has been paid to the ethical question (...) about whether adolescents and parents should access the adolescent’s EHR, and if so, under what conditions. Methods In this paper, we apply biomedical ethical principles to explore key questions about adolescents’ and parents’ access to adolescents’ EHRs, with the aim of informing future discussions about the development of ethical and policy practice guidelines. Results Drawing on current empirical research, we find preliminary evidence that in some contexts, patient online record access (ORA) could help to facilitate autonomy for adolescents and parents as well as offering support in managing appointments and medications. Notably, however, we find contrasting perspectives between adolescents’ and parents’ experienced benefits and healthcare professionals’ (HCPs) perceived potential harm, with the latter worried about decreased documentation quality after access. Concerns about capacity to understand their health information, and increased anxiety among adolescents obstruct the support of adolescent autonomy among parents and HCPs. Still, research is limited, particularly with respect to adolescents’ experiences of reading their EHRs, and differences across settings have not been closely examined. Conclusions To advance more comprehensive understanding of the effects of ORA, and to inspire greater attention to, and development of, evidence-informed ethical guidance in this domain of clinical practice, we outline a range of empirical questions regarding adolescents’ and parents’ experiences that now warrant further study. (shrink)

Introduction Patient satisfaction is a significant measure of healthcare service quality as the patient is the center of any surgical procedure. Patient satisfaction refers to the extent to which a patient’s expectations of optimal care align with their perception of the care received. Patient satisfaction during informed consent is enhanced when written informed consent is accompanied by verbal consent in the preoperative period. Satisfied patients are more inclined to adhere to therapy, engage actively in their care, utilize healthcare services, willingly (...) partake in decision-making, and remain with a healthcare provider. This research examines the practical and ethical considerations of obtaining informed consent during surgical procedures. To better understand and make informed decisions, this study aims to assess the efficacy of present consent methods and pinpoint obstacles patients encounter. Methodology A cross-sectional study was conducted from April to December 2024. Data were gathered by second-year students from Koya University’s Faculty of General Medicine by interviewing postoperative patients who had undergone general surgical procedures. The results were entered into a Google form and analyzed using SPSS27. Results In interviews with participants, 430 out of 572 patients (75%) indicated trust in their surgeons performing the surgery, while 525 patients (91%) expressed respect for their surgeons’ opinions. However, 41% (239 patients) reported not reading the informed consent form, and a similar percentage denied that the details of the form were explained by the medical staff responsible for the surgery as there are some medical terms or situations in the form that are challenging to assume if not explained. Conclusion Compared to others, participants with a higher educational level sought extensive time from the responsible surgeons to discuss every detail of the surgery before signing the informed consent, with a statistically significant difference observed. A similar difference was noted between private and public hospitals. (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)

Background Physician-assisted suicide (PAS) is increasingly being legalized in a growing number of countries and is the focus of societal and ethical debates. However, there is limited knowledge regarding the perception and acceptance of PAS across different physical and mental health conditions. This study aimed to explore emotional responses, understanding, and willingness to support individuals with the wish for PAS. Methods Participants from the general German population (N = 512) were presented with four case vignettes of PAS depicting individuals in (...) an online study: one with cancer, one with depression, one with schizophrenia, and one healthy individual. Participants were asked to evaluate the emotional reactions elicited by the desire for PAS, the extent of their understanding of this wish, and their willingness to support each individual. Results The study revealed significant differences in reactions to the case vignettes. Pro-social emotions were lowest and anger highest when considering the healthy individual. Participants demonstrated the greatest understanding and highest willingness to support the individual with cancer, while the least understanding and support were observed for the healthy person. Conclusions The differential levels of support for PAS across various conditions underscore the complex interplay between societal values, perceived quality of life, and ethical considerations, particularly when mental health is involved. (shrink)

Background In this cross-sectional study, we assessed the ethical climate at the University Hospital of Split in Croatia and investigated its potential indicators. Methods We used a validated Croatian translation of the 36-item Ethical Climate Questionnaire, which we distributed online (via an e-mail sent by the hospital administration to hospital employees) and as a paper and pen survey directly to all hospital departments. We compared ECQ scores between doctors of medicine (MDs)/doctors of dental medicine (DMDs) and other employees; MDs/DMDs and (...) nurses; employees working with patients and those not working with patients; and employees working in the ICU versus those not working in the ICU using the Mann-Whitney U test. We used linear regression to explore the relationship of each ethical climate with gender, age, degree level, and years spent working in the hospital. Results We collected 325 physical and 222 online questionnaires (547 responses in total), after which we excluded 146 incomplete responses. This left 401 questionnaires for analysis, primarily from doctors (n = 175; 43.6%) and nursing staff (n = 131; 32.7%). The two dominant climates were ‘Company rules’ and ‘Laws and professional codes’. Stratified by profession, we observed higher scores for ‘Personal morality’ among doctors of medicine or dental medicine, whereas the group comprising other health professionals and non-medical staff had higher scores for ‘Team interests’, ‘Efficiency’, ‘Social responsibility’, and ‘Laws and professional codes’. In comparing nurses and doctors of medicine/dental medicine, we observed the former group had higher scores for ‘Social responsibility’, ‘Efficiency’, and ‘Team interest’, while the latter had higher scores for ‘Personal morality’. Those who worked outside of the ICU had higher scores for ‘Social responsibility’ compared to those who did not. In the regression analyses, age was a significant positive predictor of the ‘Laws and professional codes’ climates, and years spent working in the hospital acted as a positive predictor of the ‘Self-interest’ climate. Conclusion A large university hospital center in a fully publicly funded national healthcare system has a positive ethical work climate, which could be further developed by further development and implementation of codes of ethics to outline expected behaviors from all employees. (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)

Background Armed conflicts are associated with multiple factors that may deem applying the ethical standards of research conducted in war-affected areas hard to achieve, compared to research conducted in peace time. Objective Using the example of studies conducted by the humanitarian agencies in the war-troubled region of Darfur, west Sudan between 2004 and 2012, a qualitative study was pursued to have a deeper understanding of the factors that affected the reporting of gaining the ethical approval in the published reports of (...) these studies. Methods A qualitative study was used that involved conducting interviews and focus groups with the relevant stakeholders, namely the representatives of the national and international non-governmental organizations, UN agencies, and the national humanitarian and research governance bodies in Sudan. Results 38 participants were involved (5 interviewees and 33 participants in the focus groups). The participants expressed a consensus on the need for an ethical oversight for research in the humanitarian settings in Sudan and particularly Darfur. Following a thematic analysis, four main themes were identified to explain why the humanitarian studies in Darfur were not submitted to formal ethical approval. These are (1) Inconsistent definitions of research, (2) Perceptions of low-risk, (3) Perceived urgency due to emergency context, (4) Prior study or tool approval, and (5) Lack of knowledge about ethics review procedures. Conclusion Institutional gaps in humanitarian governance structures are identified, urging the need for specialized ethics oversight mechanisms. The dynamic nature of humanitarian crises prompts nuanced approaches to ethical scrutiny, emphasizing policy initiatives to harmonize research and humanitarian governance frameworks and learning lessons from research ethics oversight in public health emergencies. (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)

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)

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)

Background With the evolving person-centered care approach, the importance of family involvement is increasingly recognized to promote comprehensive treatment. However, determining when and how to disclose patient information to families without compromising privacy rights while ensuring optimal patient care poses an ethical challenge. Therefore, we aimed to explore physicians’ attitudes regarding sharing patient data with family members and protecting patient information. Methods A convergent (i.e., concurrent) mixed-methods approach was employed, integrating quantitative data collected through a questionnaire distributed to physicians and (...) qualitative data were obtained through semi-structured interviews. Results Data from 221 physicians in Jordan revealed that only 48% would consistently seek patient consent before data disclosure, with the majority agreeing that they would share patient information with families under circumstances where family assistance is crucial (n = 180, 81.4%) or when the patient is unable to understand the information (n = 181, 81.9%). This was justified by the active involvement of family members in the treatment process (n = 182, 81.4%). Qualitative data from 14 physicians were obtained, and their perspectives revealed two main themes: 1) “Attitudes Toward Data Sharing with Patients’ Families,” which encompassed “inability of patients to make decisions,” “family involvement due to concerns,” and “pressure from family members and 2) “Significance of Patient Confidentiality “ which included “building patient trust” and “preventing harm to patients.” Conclusion A balanced approach that addresses complexities in patient data disclosure and family involvement in healthcare is necessary for fostering trust, supporting informed decision making and facilitating better health outcomes. (shrink)

Background Obtaining informed consent is the practice of respect for persons that gives the right to participants to make autonomous decisions about research participation. The difficult-to-read research informed consent forms (RICFs) hinder comprehension and can expose participants to harm. This study aims to assess the readability of health RICFs for studies approved by the National Health Research Ethics Committee (NatHREC) in Tanzania. Methods We used a retrospective cross-sectional study design. A total of 266 RICFs were sampled from the NatHREC database (...) using stratified and systematic random sampling strategies. The readability of RICFs was assessed using the Flesch Reading Ease (FRE) and Flesch-Kincaid Readability Grade Level (FKRGL) formulas available in Microsoft Word Office and by manual check. Data were collected using the assessment checklist, analyzed, and presented with SPSS and MS Excel software. Results Out of 266 RICFs assessed, 65.4% had the recommended page numbers, 81.6% had longer sentences, and 80.5% were difficult to read, necessitating a person to acquire a US grade 10 (Form Four educational level in Tanzania) to understand the presented information. Pearson’s correlation coefficient with p-values of < 0.001 and 95% confidence level disclosed that sentence lengths in the RICFs had a statistical association with the difficult reading levels obtained. Conclusion Findings from this study showed that most of the RICFs were concise in terms of page numbers and word count but had long and difficult sentences. Researchers should assess the readability of RICFs before submitting them for ethical approval. Research Ethics Committees (RECs) should consider inclusion of RICFs readability measurements in the Ethics Guidelines for Health Research. The study recommends further studies to assess the Kiswahili versions of RICFs to determine if the results obtained in this study apply to Kiswahili texts. Clinical trial number Not applicable. (shrink)

Background Humanitarian organizations are rapidly expanding their use of data in the pursuit of operational gains in effectiveness and efficiency. Ethical risks, particularly from artificial intelligence (AI) data processing, are increasingly recognized yet inadequately addressed by current humanitarian data protection guidelines. This study reports on a scoping review that maps the range of ethical issues that have been raised in the academic literature regarding data processing of people affected by humanitarian crises. Methods We systematically searched databases to identify peer-reviewed studies (...) published since 2010. Data and findings were standardized, grouping ethical issues into the value categories of autonomy, beneficence, non-maleficence, and justice. The study protocol followed Arksey and O’Malley’s approach and PRISMA reporting guidelines. Results We identified 16,200 unique records and retained 218 relevant studies. Nearly one in three (n = 66) discussed technologies related to AI. Seventeen studies included an author from a lower-middle income country while four included an author from a low-income country. We identified 22 ethical issues which were then grouped along the four ethical value categories of autonomy, beneficence, non-maleficence, and justice. Slightly over half of included studies (n = 113) identified ethical issues based on real-world examples. The most-cited ethical issue (n = 134) was a concern for privacy in cases where personal or sensitive data might be inadvertently shared with third parties. Aside from AI, the technologies most frequently discussed in these studies included social media, crowdsourcing, and mapping tools. Conclusions Studies highlight significant concerns that data processing in humanitarian contexts can cause additional harm, may not provide direct benefits, may limit affected populations’ autonomy, and can lead to the unfair distribution of scarce resources. The increase in AI tool deployment for humanitarian assistance amplifies these concerns. Urgent development of specific, comprehensive guidelines, training, and auditing methods is required to address these ethical challenges. Moreover, empirical research from low and middle-income countries, disproportionally affected by humanitarian crises, is vital to ensure inclusive and diverse perspectives. This research should focus on the ethical implications of both emerging AI systems, as well as established humanitarian data management practices. Trial registration Not applicable. (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)

Occupational stigmatization in Chinese healthcare institutions has intensified due to negative public events (e.g., kickbacks, bribes, and patient conflicts). While previous studies have mainly focused on the negative effects of stigma on practitioners’ physiological and psychological states of practitioners with low prestige, little attention has been given to the moral psychological mechanisms involved or the potential positive outcomes. This study aims to explore the moral mechanisms of healthcare professionals’ perceived occupational stigma on organizational citizenship behavior (OCB), with a specific focus (...) on the potential effects of moral credibility loss, moral sensitivity, and occupational prestige. This study employed a hierarchical regression method to test the theoretical model, using data from 554 healthcare professionals (including 311 physicians and 243 nurses) from 7 hospitals in China. Confirmatory factor analysis, hierarchical regression, bootstrapping analysis (= 5000 times) and simple slope test using SPSS and AMOS were employed. The empirical results demonstrate that healthcare professionals’ occupational stigma enhances OCB by increasing moral credibility loss, with moral sensitivity playing a moderating role. Additionally, this study categorizes healthcare professionals into two groups based on occupational prestige: physicians (high occupational prestige) and nurses (relatively lower occupational prestige). The findings indicate that occupational prestige not only moderates the positive relationship between occupational stigma and moral credibility loss but also moderates the relationship between moral credibility loss and OCB. This study comprehensively explores healthcare professionals’ occupational stigma and reveals its positive moral effects, specifically in enhancing OCB through the moral cleansing perspective. These findings offer a novel understanding of occupational stigma, providing practical guidance for improving professional ethics and OCB. (shrink)

This review examines global human genetic resources management, focusing on genetic data policies and repositories in high- and middle-low-income countries. A comprehensive search strategy was employed across multiple databases, including official government websites and Google, to gather relevant literature on human genetic resources management policies and genetic resource databases. Documents were screened for relevance, focusing on high-income countries (United States, United Kingdom, Japan) and middle-low-income countries (China, India, Kenya). Data were extracted, coded, and analyzed to identify common themes and differences (...) in genetic resource management practices. High-income countries benefit from robust legal frameworks and advanced technological infrastructures. The United States enforces the Health Insurance Portability and Accountability Act and the Genetic Information Nondiscrimination Act to protect privacy and facilitate data sharing, while Japan relies on the Act on the Protection of Personal Information and ethical guidelines. Additionally, high-income countries host a variety of genetic databases and biobanks that support scientific research. In contrast, middle-low-income countries like China, India, and Kenya are still developing their frameworks. China has regulations such as the Biosecurity Law and the Regulations on the Management of Human Genetic Resources, but still requires more unified standards. India’s policies focus on genetic research and data protection through the Biological Diversity Act, while Kenya seeks to improve data management through the 2019 Data Protection Act. Significant disparities exist in human genetic resources management between high-income and middle-low-income countries. High-income countries have robust systems balancing privacy protection with research facilitation, supported by comprehensive and large-scale databases for scientific research. Middle-low-income countries need to enhance legal frameworks and build population-specific databases. Promoting equitable data sharing and adopting best practices from high-income countries are essential for advancing global scientific discovery and ensuring fair management of genetic resources. (shrink)

Background Intelligent assistive technology (IAT) can contribute to the empowerment of persons with dementia by increasing independence, strengthening social participation, and improving quality of life. IAT could, however, also create new dependencies, reinforce power asymmetries, perpetuate stigmatization, and invade the privacy of persons living with dementia. To fulfill the empowering promise of new technologies and design a user-friendly IAT, users'perspectives, needs, capabilities and interests should be incorporated into IAT development and implementation from an early stage. Yet, the development and ethical (...) assessment of IAT still tends to neglect the perspectives of potential user groups. This study explores how persons with dementia and their caregivers assess the empowering potential, opportunities, and risks of IAT. Methods We conducted a qualitative content analysis of 27 semi-structured interviews with persons with dementia (12) and their caregivers (15). Three technologies (GPS bracelet, dressing technology, and emotion recognition technology) were presented in the interviews using fictional case vignettes. Results Persons with dementia and their caregivers generally believe that IAT can potentially empower persons with dementia by improving their independence in performing daily tasks, supporting their independent mobility, increasing their physical and emotional sense of safety, and improving their social participation. The risks they identify include violations of privacy, patronization through technology, lack of user specificity, and insufficient everyday usability. Technologies are viewed very differently depending on the context, purpose of use, and user group. Conclusion IATs seem to have the potential to empower persons with dementia, but risks and benefits are perceived differently by the interviewees. The technology’s usefulness depends on adapting to users' needs, capabilities, and interests. Future studies using a participatory approach that includes user preferences from the outset could lead to more user-centered technologies that promote the empowerment of persons with dementia. (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)

In hospital, nurses are often the first to identify patients in cardiorespiratory arrest and must decide whether to call a CODE BLUE and commence cardiopulmonary resuscitation (CPR). In Australia, there are no legal or policy obligations to commence CPR when unequivocal signs of death are present. The use of CPR where it cannot provide any benefit to a patient raises profound questions about decision-making and ethical practice. The aim of this empirical ethics study was to describe hospital-based nurses’ decision-making, perspectives, (...) and experiences of initiating CPR in hospitalised patients who have unequivocal signs of death but lack a Do-Not-Resuscitate (DNR) order. The study was a multisite cross-sectional descriptive survey conducted between October 2023—April 2024. Nurses were presented with two clinical scenarios in which patients were found to have no signs of life: Mr. D, an 84-year-old male with cancer, and Mr. G, a 35-year-old male post-motor vehicle accident. Eligible participants were all nurses working in in-patient units. Descriptive statistics, Pearson Chi-square or Fisher’s exact tests, McNemar test, and binomial logistic regression were used to analyse the data. 531 nurses completed the survey. For Mr D, 61.5% (n = 324) would call a CODE BLUE, 24.1% (n = 127) would perform limited CPR. Only 14.4% (n = 76) would confirm death. For Mr G, 93.9% (n = 492) would call a CODE BLUE, 4.4% (n = 23) would perform limited CPR, and 1.7% (n = 9) would confirm death. The major reasons why nurses initiate a CODE BLUE were ‘In the absence of an DNR order, there is no option but to begin CPR’, ‘I am required by hospital policy to do so’, ‘I am required by law to do so’ and ‘It is what I was trained to do’. Most nurses would commence CPR in patients with clear signs of death in the absence of a DNR order. This seems most likely related to ignorance or misunderstanding of law, policy and/or the misapplication or professional norms. These results raise important questions about the drivers of nurses understanding of and engagement with CPR. This highlights ethical concerns for care and treatment of patients at the end of their life and underscores the need to examine ethical practice, agency, and professionalism and supports review of policy, practices and education regarding ethical end-of-life decision making and care. (shrink)

Background Future planning is essential for care partners to discuss and prepare for the goals of care for their relatives living with dementia. However, engaging in these discussions can be particularly challenging as care partners navigate the unpredictable and uncertain trajectory of dementia. This study aimed to explore how care partners of persons living with dementia engage in future planning (or not) throughout the dementia journey. Methods This multi-method qualitative study used a relational autonomy framework to examine the experiences of (...) care partners providing daily care to a person living with dementia. Fifteen care partners from British Columbia, Canada, participated in semi-structured interviews and maintained reflective diaries over a period of up to two years (August 2020–October 2023). Data were analyzed using thematic analysis to identify patterns and themes related to future planning. Results Four key themes were identified through the analysis: (1) changes to living arrangements, as care partners adjusted to the evolving needs of their relatives; (2) anticipatory grief, reflecting the emotional impact of witnessing the progression of dementia; (3) future planning with changing health, highlighting the challenges of aligning care plans with the shifting health status of the person living with dementia; and (4) finding hope, as care partners sought meaning and optimism amidst uncertainty. Conclusions This study underscores the complex and dynamic nature of future planning for care partners of individuals with progressive dementias. The findings highlight the need for tailored resources and interventions to support care partners in navigating future planning discussions, particularly in light of the emotional and relational challenges they face. Developing such resources could improve the preparedness and well-being of care partners as they engage in this critical aspect of caregiving. (shrink)

Informed consent is a bedrock of ethical medical practice; however, scenarios in which a third party refuses life-saving treatment for an incapacitated patient present a unique and underexplored ethical quandary. Such conflicts are especially challenging when cultural or religious values influence decisions. In Muslim-majority contexts, healthcare practitioners often grapple with whether and how Islamic jurisprudence might justify overriding a guardian’s refusal. While numerous case reports exist on patient-centred autonomy and consent, few specifically address the intersection of parental refusal, religious and (...) ethical frameworks, and urgent clinical interventions. By examining this case and situating it within Islamic legal reasoning, we highlight a novel angle that offers healthcare providers religious insight and practical guidance. We present the case of an 18-year-old Muslim female with no prior significant medical history who arrived at the emergency department unconscious and in impending respiratory arrest. The clinical team recommended intubation to prevent critical deterioration. However, the patient’s sole legal guardian—her mother—adamantly refused consent for endotracheal intubation and other potentially life-saving measures, including CPR, citing personal mistrust and past negative healthcare experiences. In response, the team adopted a less effective non-invasive ventilation strategy and pursued repeated discussions to understand the mother’s rationale. Despite these efforts, the patient’s trajectory only improved gradually without the recommended definitive intervention. The patient, once conscious, deferred decision-making entirely to her mother. Subsequent readmissions repeated this pattern of refusal and partial treatment acceptance. Ultimately, the patient recovered sufficiently for discharge, though underlying risk factors remained poorly addressed as she defaulted on her subsequent follow-up appointment. This case underscores the tension between guardian decisions, patient welfare, and religious-ethical principles. Our analysis reveals a principled basis for prioritising patient well-being over third-party refusal by examining Islamic jurisprudential rulings on consent. The insights from this case could inform more religio-culturally sensitive policies and strengthen clinical decision-making frameworks in contexts where religious norms significantly shape healthcare choices. (shrink)

In the realm of healthcare, nurses frequently encounter complex ethical issues that demand moral courage. Nurses'moral courage is defined as the ability to act in alignment with their moral beliefs, even when faced with difficulties and dangers during ethical challenges. This study aims to explore the role of moral courage in nursing practice, highlighting its importance in maintaining patient care standards and fostering ethical decision-making. This scoping review on nurses’ moral courage was conducted following Arksey and O’Malley’s five-step approach. Relevant (...) literature was sourced from databases such as Embase, PubMed, ScienceDirect, Web of Science, PsycINFO, Scopus, and CINAHL, spanning the years 2000–2024. A total of 40 studies were selected, focusing specifically on the foundations and influences of nurses’ moral courage, with data extraction and synthesis for reporting. The study highlights moral courage as crucial in nursing for ethical decision-making and patient care. Global variations in moral courage are influenced by cultural, contextual, and organizational factors. Tools for measurement show score discrepancies. Nursing education shapes moral courage, necessitating tailored programs. Research explores personal and organizational influences on ethical behavior, with factors like age, work experience, and ethics training impacting moral courage. Morning shift nurses and those with official employment exhibit higher moral courage. Gender’s impact remains inconclusive, requiring further study. Training in nursing ethics enhances moral courage, emphasizing its role in care quality. In conclusion, understanding the diverse factors shaping moral courage in nursing is vital for navigating ethical challenges and improving patient care quality. Tailored educational strategies are essential to foster moral courage among nursing professionals globally, emphasizing the need for ongoing research and interventions to enhance ethical practice and patient outcomes. (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 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 The provision of prenatal testing through publicly funded healthcare systems, including non-invasive prenatal testing (NIPT), is frequently justified on the basis of supporting reproductive autonomy and informed choice. This includes decision-making around termination of pregnancy (TOP), including where it is due to a diagnosis of fetal anomaly (TOPFA). In Germany, TOP is regulated under the criminal code. However, it is exempt from punishment, if provided upon request from the woman up to 12 weeks after conception (14 weeks gestation) and (...) following mandatory counselling. After this gestational stage, TOP may be provided where it is necessary to ensure the physical and mental wellbeing of the pregnant woman. However, there is a significant lack of clarity about how to interpret and apply this criterion. Fetal anomaly is often detected or confirmed after the time limit for TOP upon request has passed, which introduces uncertainty whether a fetal indication justifies legal access to TOP. Methods This study explores attitudes towards TOP, experiences with decision-making and access, and the implications of the German legal and regulatory frameworks. It draws on a qualitative semi-structured interview study, conducted between 2021 and 2022. Participants were 20 German professionals who have experience or expertise regarding the provision of NIPT, as well as 7 women with experiences of pregnancy, reproductive decision-making and the offer of NIPT. Interviews were conducted in German, and then transcribed, translated, and analysed using thematic analysis. Results Participants explored the importance of being able to access TOPFA; how the social positioning of TOP as a taboo procedure creates practical and psychosocial barriers to TOPFA access; the tension of who ultimately gets to make the decision about whether TOP can be provided; and how gestational time limits create emotional stress, frustrating informed decision-making and reproductive autonomy. Conclusions Our findings highlight that where prenatal testing is provided in the absence of guaranteed access to TOP, women’s wellbeing becomes an empty declaration in German healthcare policy. (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)

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)

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)

Introduction Current research documents both the historical impact of racism in healthcare as well as studies piloting antiracist interventions as part of medical training to ameliorate its stigma, bias, and consequences in medicine. The purpose of this study was to qualitatively analyze the impact of a one session lecture surrounding racial issues in psychiatry on third-year medical students’ thoughts and reflections surrounding the content. Methodology Remote methodologies were used to engage medical students in a lecture created by a major University’s (...) Substance Use Disorder Center of Excellence to address the legacy of racial issues in psychiatry as well as present interventions. The team collected anonymous evaluations via anonymous chat submission after each lecture. Qualitative evaluation data were compiled from 108 students across 11 sessions over the course of a year. The team reviewed major and minor themes and synthesized following the Standards for Reporting Qualitative Research (SRQR) guidelines for qualitative reporting. Results We identified the following five themes:1) appreciation and notes on the content itself; 2) how the information presented can impact future clinical care; 3) the interconnectedness of social determinants of health and racism; 4) recognizing power dynamics with patients; and 5) opportunities for future education. Conclusion Information compiled both from participating students and the available literature can inform future education efforts to build opportunities for antiracist training in medical education. (shrink)

Background Euthanasia and physician-assisted suicide (PAS) are complex and ethically challenging topics. Physicians’ attitudes toward euthanasia and PAS have been studied, but little is known about their ethical considerations regarding these topics. This study aimed to assess Finnish physicians’ views on assisted dying (AD), including euthanasia and PAS. Our special emphasis was to describe physicians’ views on the legalization of AD, their views on AD as a phenomenon, and how AD reflects on physicians’ roles. Methods A survey including statements and (...) open questions concerning euthanasia and PAS was sent to all Finnish physicians in 2020. The data was analysed using quantitative measures and a qualitative approach. Results Altogether, 6889 physicians answered the survey, yielding a response rate of 26%. Of the responders, 9% fully agreed that accepting euthanasia would benefit the physician-patient relationship, while 19% fully agreed that it would harm this relationship. From 2565 responders, 3033 answers were received to the open questions. The qualitative analysis yielded two unifying categories, firstly ‘Physicians’ views on assisted dying (AD) in the current societal situation and on its legalization’ included three main categories namely: ‘AD and end-of-life issues in the current societal situation’ (f = 230), ‘Physicians perspectives on legalisation of AD’ (f = 605) and ‘The possible consequences of legalizing AD’ (f = 543). Secondly, the unifying category ‘Physicians views on AD as part of their work and as a phenomenon’ included two main categories, ‘AD and the physicians’ professional role (f = 650) and ‘AD as a multifaceted phenomenon’ (f = 296). Conclusion Assisted dying is seen as a complex issue, and it was difficult to form an opinion on it. Physicians and the care team are faced with ethical dilemmas about topics related to AD, even though it is not legalized in Finland. Open and pluralistic discussion on AD, including ethical aspects, implications for society and end-of-life care practices is of utmost importance. (shrink)

End-of-life (EoL) decisions represent some of the most ethically complex and emotionally charged aspects of healthcare. Understanding the attitudes of physicians, nurses, and the public toward EoL decisions is crucial for aligning care provided with the personal values and preferences of patients. To explore the attitudes of physicians, nurses, and the general public toward EoL decisions, including the withdrawal or withholding of life-sustaining treatments, euthanasia, physician-assisted suicide (PAS), palliative sedation, and advance care planning (ACP) within European countries. An umbrella review (...) was conducted, covering the period from January 2010 to June 2024. The search strategy included Medline, CINAHL, and PsycINFO, supplemented by manual searches of reference lists of all included studies to identify additional relevant studies. The search identified 587 papers, 11 of which were included in the synthesis. Of these, six addressed euthanasia and PAS, three focused on ACP, one on the withdrawal of life-sustaining treatments, and one on palliative sedation. In Europe, the general public expressed the highest level of support for EoL practices such as euthanasia and PAS, followed by nurses, while physicians often held a more cautious perspective. For withdrawal of treatment, palliative sedation, and ACP, a critical recurring theme was the need to improve communication between patients and healthcare professionals. The divergence underscores the intricate complexity of navigating ethical, cultural, and professional considerations in EoL care. Effective communication serves as a cornerstone for respecting patient autonomy and ensuring that healthcare decisions align with individual values, goals and preferences. (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)

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 End-of-life (EOL) decision-making involves complex ethical, cultural, and religious considerations, particularly within minority communities. In Israel, the Arab population, comprising approximately 21% of the country’s population, remains underrepresented in EOL research. This study explores the EOL care preferences of elderly Arab individuals and their families, focusing on the interplay between cultural values, religious beliefs, and personal autonomy. Methods A qualitative study was conducted using semi-structured interviews with 24 participants, including elderly individuals (aged 60+) and their family members. Participants were (...) recruited through purposive and snowball sampling in community settings across northern Israel. Data were transcribed, translated, and thematically analyzed to identify key patterns in attitudes toward EOL care. Results Findings reveal a strong preference among elderly Arab participants for a peaceful and dignified death at home rather than in a medicalized setting. Quality of life was prioritized over life-prolonging treatments, with religious beliefs playing a significant role in shaping perspectives. However, cultural taboos and generational differences hindered open communication within families. Many younger family members assumed their elders preferred life extension, while elderly participants often desired comfort-focused care. Additionally, a lack of awareness of advance care planning tools limited the ability of patients to formally express their preferences. Discussion A major challenge identified in this study is the absence of open discussions about EOL preferences, driven by cultural taboos, emotional discomfort, and fear. Many participants avoided such conversations due to beliefs that discussing death invites misfortune or imposes an emotional burden on loved ones. Younger family members, in particular, hesitated to engage in these discussions, leading to decisions based on assumptions rather than explicit patient wishes. Encouraging structured, culturally sensitive conversations and increasing awareness of advance care planning could help ensure that patients’ preferences are recognized and respected. Conclusions Bridging the gap between assumptions and actual preferences requires culturally sensitive communication, increased awareness of advance care planning, and structured family discussions. These measures will ensure that EOL care respects both individual autonomy and cultural values, fostering a more inclusive and patient-centered healthcare approach. (shrink)

Every minute during an epidemic is important and research in such conditions is for the benefit of the society. Considering that identifying experiences is a way to prevent repeated mistakes and prepare people to face crisis situations, this study aimed to explain participants’ experiences of ethical challenges encountered in conducting research related to Covid-19 in Iran. This qualitative study was carried out using conventional content analysis for 2 years from March 2020 to March 2022 in Tehran, Iran. A number of (...) 30 people were selected in a purposeful method and information was obtained through semi-structured interviews. The participants in the study were people with positions including members of institutional and national research ethics committees, researchers, clinicians, university hospitals managers during the COVID-19 pandemic. The method of data analysis in this study was conventional content analysis using the Graneheim and Lundman method. Participants’ experiences on ethical challenges were explained through three themes: “substantive ethical values principles”, “the Research Environment”, “Research Governance and Management”. This study examines ethical challenges in COVID-19 research across three domains: values, environment, and research governance. The results suggest the need to develop crisis-specific ethical frameworks, strengthen research ethics infrastructure and training, and establish more transparent standards and oversight systems. These findings could be useful in refining ethical policies and managing future crises. (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 Globally, there is a notable increase in recognising the health needs of transgender and gender-diverse individuals. As a result, gender-affirming care services are evolving and expanding in many parts of the world, and this has provoked increased debate on various aspects of the interventions that comprise such care. Resolution of these debates depends on addressing important ethical issues. This scoping review aims to identify the key ethical issues and arguments regarding gender-affirming care across various medical interventions. Methods We searched (...) Embase, PubMed and SCOPUS to identify peer-reviewed publications that could meet some eligibility criteria such as publications presenting an ethical issue, argument, or principle related to gender-affirming care for transgender and gender-diverse individuals and having been published from 2012 to 2023. We applied Arksey and O’Malley’s scoping review framework. The text of included publications was analysed inductively. Results Eighty-two publications were identified for inclusion. Sixty-two publications (76%) were published in or after 2019, and 20 (24%) between 2012 and 2018. Five aspects of gender-affirming care that draw ethical analysis or debates were identified: decision-making process, guideline and model of care, deletion of health data, funding, and fertility preservation and services. Ethical issues and arguments were identified within each aspect of care. The arguments are organised according to the four principles of biomedical ethics: autonomy, beneficence, non-maleficence and justice. Conclusion This scoping review captures the key ethical issues in various aspects of gender-affirming care. There were substantial differences in the depth to which each aspect of gender-affirming care was discussed, with ethical issues in decision-making processes receiving the most attention, and deletion of health data given the least attention. This review also characterises the dominant ethical arguments and underlying principles used to justify positions on the issues. Within each ethical issue, the four principles of biomedical ethics featured commonly, but were applied very differently and accorded unequal weighting. Additionally, in some discussions, arguments supporting medical interventions were given more attention; in others, the rationales opposing medical interventions were dominant. Perhaps unsurprisingly, there was limited resolution and increasing disagreement. Important constraints in the methodologies of argumentation used to support or oppose aspects of gender-affirming care were also identified. (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)

Background This paper examines challenges associated with the governance of large-scale biobanks. As the collection and interrogation of population-scale data is increasingly positioned as a route to new understandings of health and disease, large-scale biobanks are becoming essential elements of research infrastructure. However, their longitudinal nature presents challenges for governance, particularly in relation to consent. Typically, participants agree to specific activities at recruitment, but evolving technologies make it difficult to anticipate future research applications at this time. Using a case study (...) from UK Biobank, we demonstrate how trying to reconcile new research activities with old consent risks overlooking critical ethical issues —particularly how the proposed activity aligns with participants’ understanding and expectation of biobank research. Methods We conducted focus groups with UK Biobank participants using individual and group exercises to explore their views on consent and different types of research on their samples and data. Results Our findings show that participants locate responsibility for research decisions with the biobank, rather than seeking control through their consent. They perceive their consent not as a one-off agreement but as the `opening act' for a research relationship with the biobank that can be continued through communication. Conclusions Focussing on the ongoing research relationship -and the practices that sustain it- is more important than the specific wording on consent forms signed at recruitment. We argue this will be more effective in meeting participant expectation as well as supporting ethical research. (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)

Background Sickle cell disease (SCD) and Diamond-Blackfan anemia syndrome (DBAS) are two hereditary blood diseases that present significant challenges to patients, their caregivers, and the healthcare system. Both conditions cause severe health complications and have limited treatment options, leaving many individuals without access to curative therapies like hematopoietic stem cell transplantation. Recent advancements in gene and cell therapies offer the potential for a new curative option, marking a pivotal shift in the management of these debilitating diseases. However, the implementation of (...) these therapies necessitates a nuanced understanding of the ethical and social implications. Methods In this mixed methods systematic review, we explore the responsible development and implementation of gene and cell therapies for SCD and DBAS and aim to sketch a path toward ethically and socially sound implementation. Drawing upon principles of Responsible Research & Innovation and the 4A framework of availability, accessibility, acceptability, and affordability, we thematically analyze existing research to illuminate the ethical and social dimensions of these therapies. Following established PRISMA and JBI Manual guidelines, a search across multiple databases yielded 51 peer-reviewed studies with publication dates ranging from 1991 to 2023. Results Our thematic analysis shows that the theme of acceptability is heavily shaped by interactions between patients, caregivers, healthcare professionals and researchers, influencing treatment decisions and shaping the development of curative gene and cell therapies. Despite the generally positive perspective on these therapies, factors like the limited treatment options, financial constraints, healthcare professional attitudes, and (historical) mistrust can impede stakeholder decision-making. While acceptability focuses on individual decisions, the themes of availability, accessibility, and affordability are interconnected and primarily driven by healthcare systems, where high research and development costs, commercialization and a lack of transparency challenge equitable access to these therapies. This diminishes the acceptability for patients, revealing a complex interdependence of the themes. Conclusions The findings suggest the need for improved communication strategies in clinical practice to facilitate informed decision-making for patients and caregivers. Policy development should focus on addressing pricing disparities and promoting international collaboration to ensure equitable access to therapies. This review has been pre-registered in PROSPERO under registration number CRD42023474305. (shrink)

The importance of more diversity of study populations in clinical trials is currently widely acknowledged. Decentralized clinical trial (DCT) approaches are presented as a potential means to broaden diversity by eliminating several barriers to participation. However, the precise meaning of, and objectives related to diversity in DCTs remain unclear. Diversity runs the risk of becoming a ‘buzzword’: widely acknowledged to be important, yet prone to multiple interpretations and challenging to implement in practice. We argue that the aim of increasing diversity (...) in clinical trials requires clear and well-substantiated specifications. We analyze the concept of diversity and the ethical requirements surrounding fair participant selection within the context of clinical research, in order to further specify and operationalize the aim of increasing diversity in the context of DCTs. Through analyzing the concept of diversity and ethical requirements for fair participant selection, we propose that diversity should be specified in a way that improves the position of the groups that are currently most underrepresented in the research context. In practice, this entails that, in order to contribute to diversity, the selection of participants should prioritize (i) gaining scientific knowledge on groups for which this is lacking, and (ii) inclusion of underrepresented groups in research when appropriate considering a study’s objectives, and risks and benefits. Our analysis facilitates translating the aim of increasing diversity with DCTs to more specific and actionable objectives for recruitment and inclusion. Moreover, it contributes to a further specification of the concept of diversity and fair participant selection in research contexts. (shrink)

The issue of late termination of pregnancy (abortion after a certain gestational age, depending on different definitions) is a topic of intense debate among healthcare professionals and the public, as it involves balancing the divergent interests and needs of the pregnant person and the foetus. Some jurisdictions recognize severe mental distress as a valid criterion for allowing late termination of pregnancy. However, the unavailability of a clear definition presents challenges in clinical practice. A scoping literature review was conducted to examine (...) how the criterion of severe mental distress is operationalised in the context of late termination of pregnancy. In addition, we conducted a qualitative content analysis of clinical ethics consultation reports dealing with requests for late termination of pregnancy in a Swiss university hospital. The scoping review of the literature yielded that 23 publications distributed worldwide were relevant to the question. Regarding the concept of severe mental distress, there is no uniform terminology. The indication for abortion is referred to as psychiatric, psychosocial, or sociomedical indication, or maternal emergency. Various criteria are mentioned that can contribute to categorising a condition as a severe mental crisis to varying degrees, including age, psychiatric illnesses, psychological conditions, foetal malformations, socio-economic conditions, or criminological circumstances. The qualitative content analysis of 20 clinical ethics consultation reports revealed a range of ethical challenges that arise in clinical practice, namely how the risk of severe mental distress can be assessed, whether the termination of pregnancy is suitable to avert the distress, and whether the termination of pregnancy is proportionate. We identified several recurring criteria that require clarification to aid decision making, such as whether treatment options and alternatives have been adequately discussed and presented, whether the request is consistent and enduring, and whether there are causes of severe mental distress that could be eliminated otherwise. For jurisdictions that allow late-term abortion based on severe mental distress, we propose a set of guiding questions to support healthcare professionals engaging in careful decision making. (shrink)

This study investigated the status of research integrity knowledge among dental undergraduates from 34 Chinese universities in 5 key demographic regions. Questionnaires regarding the status of research integrity, including perception, attitude, and firsthand experience of scientific research integrity, were distributed to dental undergraduates of 34 Chinese universities. These universities were from 5 key demographic regions of China, i.e., eastern, western, northern, southern, and central. The questionnaires filled out by 1514 participants were further analyzed. The results showed that among the participants, (...) nearly 70% acquire scientific integrity knowledge through courses, as well as ideological and political education, while the remaining students acquire scientific integrity knowledge through other means, such as books and conferences. From the attitude perspective, most students (80-90%) oppose scientific misconduct. However, a few students also have an insufficient understanding of scientific misconduct and still need to improve their scientific research integrity training further. We also found that the research integrity training and the surrounding research environment affect students' attitudes and self-behavior regarding scientific integrity. Our findings indicate that the ethical academic and research environment, implementation of scientific integrity courses in the curriculum, and proper supervision are vital in improving scientific research integrity knowledge in dental undergraduates in Chinese universities. (shrink)

Background Medical Assistance in Dying (MAiD) has transformed health policy and practice on death and dying. However, there has been limited research on what shaped its emergence in Canada and the beliefs and views of health leaders who hold positions of influence in the healthcare system and can guide policy and practice. The objective of this study was to examine health leaders’ perspectives on the factors that led to the emergence of MAiD and explore their attitudes about the legalization of (...) MAiD. Methods In this qualitative study, we conducted online semi-structured interviews with health leaders from April 2021 to January 2022. Purposive and snowball sampling techniques were used to recruit health leaders who have expertise and engagement with the delivery of MAiD or palliative and end-of-life care, and who hold positions of leadership relevant to MAiD in their respective organisations. Inductive thematic analysis was used to analyze the transcribed interviews. Results Thirty-six health leaders were interviewed. Participants identified six factors that they believed to have led to the introduction of MAiD in Canada: public advocacy and influence; judicial system and notable MAiD legal cases; political ideology and landscape; policy diffusion; healthcare system emphasis on a patient-centred care approach; and changes in societal and cultural values. Participants expressed wide-ranging attitudes on the legalization of MAiD. Some described overall agreement with the introduction of MAiD, while still raising concerns regarding vulnerability. Others held neutral attitudes and indicated that their attitudes changed on a case-by-case basis. Participants described four factors that they considered to have had influence on their attitudes: personal illness experiences; professional experiences and identity; moral and religious beliefs; and, the valence of patient autonomy and quality of life. Conclusions This study highlights the wide-ranging and complex attitudes health leaders may hold towards MAiD and identifies the convergence of multiple factors that may have contributed to the legalization of MAiD in Canada. Understanding health leaders’ attitudes and perspectives on the legalization of MAiD may inform stakeholders in other countries who are considering the legalization of assisted dying. (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)