BMC Medical Ethics最新文献

{"title":"Between empowerment, patronization, and surveillance. A semi-structured interview study with persons with dementia and family caregivers on the empowering opportunities and perils of intelligent assistive technologies.","authors":"Clara Löbe, Niklas Petersen","doi":"10.1186/s12910-025-01203-7","DOIUrl":"10.1186/s12910-025-01203-7","url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusion: </strong>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.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"26 1","pages":"44"},"PeriodicalIF":3.0,"publicationDate":"2025-04-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11971744/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143788968","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"End of life care preferences in the Arab population in Israel- bridging the gap between unfounded assumptions and autonomous wishes.","authors":"Morad Sayid Ahmad, Maya Peled Raz","doi":"10.1186/s12910-025-01201-9","DOIUrl":"10.1186/s12910-025-01201-9","url":null,"abstract":"<p><strong>Introduction: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Discussion: </strong>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.</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"26 1","pages":"42"},"PeriodicalIF":3.0,"publicationDate":"2025-04-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11969688/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143788969","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Exploring the foundations and influences of nurses'moral courage: a scoping review.","authors":"Mina Mollaei, Fateme Metanat, Amirreza Rafiei Javazm, Mahdieh Motie","doi":"10.1186/s12910-025-01205-5","DOIUrl":"10.1186/s12910-025-01205-5","url":null,"abstract":"<p><strong>Introduction: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusion: </strong>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.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"26 1","pages":"43"},"PeriodicalIF":3.0,"publicationDate":"2025-04-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11971872/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143789185","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Reconsidering autonomy: Asian Americans' use of relational autonomy in organ donation decisions.","authors":"Gerard P Alolod, Diana C Litsas, Laura A Siminoff","doi":"10.1186/s12910-025-01206-4","DOIUrl":"10.1186/s12910-025-01206-4","url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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.</p><p><strong>Clinical trial number: </strong>Not applicable.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"26 1","pages":"41"},"PeriodicalIF":3.0,"publicationDate":"2025-04-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11966370/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143774923","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Women's wellbeing as an empty declaration? A qualitative exploration of challenges in accessing termination of pregnancy due to fetal anomaly in Germany.","authors":"Tamar Nov-Klaiman, Hilary Bowman-Smart, Ruth Horn","doi":"10.1186/s12910-025-01196-3","DOIUrl":"10.1186/s12910-025-01196-3","url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"26 1","pages":"40"},"PeriodicalIF":3.0,"publicationDate":"2025-03-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11929346/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143677420","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Between hope and future planning: the dementia journey for care partners through the lens of relational autonomy.","authors":"Alixe Ménard, Adebusola Adekoya, Elizabeth Birchall, Kishore Seetharaman, Lucy Kervin, Koushambhi Khan, Jennifer Baumbusch","doi":"10.1186/s12910-025-01197-2","DOIUrl":"10.1186/s12910-025-01197-2","url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"26 1","pages":"39"},"PeriodicalIF":3.0,"publicationDate":"2025-03-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11929221/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143677367","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Ethical challenges in conducting research in low and middle income setting during public health emergencies: a qualitative evidence of a COVID-19 pandemic: the experience of Iran.","authors":"Ehsan Shamsi-Gooshki, Alireza Parsapoor, Soolmaz Moosavi","doi":"10.1186/s12910-025-01193-6","DOIUrl":"10.1186/s12910-025-01193-6","url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Method: </strong>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.</p><p><strong>Results: </strong>Participants' experiences on ethical challenges were explained through three themes: \"substantive ethical values principles\", \"the Research Environment\", \"Research Governance and Management\".</p><p><strong>Conclusion: </strong>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.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"26 1","pages":"38"},"PeriodicalIF":3.0,"publicationDate":"2025-03-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11912589/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143651908","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A scoping review of human genetic resources management policies and databases in high- and middle-low-income countries.","authors":"Hongwei Liu, Yin Liu, Yanyan Zhao, Yingqi Ma, Qiong Chen, Huifang Xu, Xiaoyang Wang, Xiaoli Guo, Hong Wang, Zelong Chen, Shaokai Zhang, Binbin Han","doi":"10.1186/s12910-025-01192-7","DOIUrl":"10.1186/s12910-025-01192-7","url":null,"abstract":"<p><strong>Background: </strong>This review examines global human genetic resources management, focusing on genetic data policies and repositories in high- and middle-low-income countries.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusion: </strong>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.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"26 1","pages":"37"},"PeriodicalIF":3.0,"publicationDate":"2025-03-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11909912/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143634995","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Development and psychometric properties of the nursing ethical decision-making ability scale.","authors":"Xinyu Chen, Chenxi Wu, Wenting Ji, Dingxi Bai, Huan Chen, Chaoming Hou, Jing Gao","doi":"10.1186/s12910-025-01190-9","DOIUrl":"10.1186/s12910-025-01190-9","url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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 χ²/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.</p><p><strong>Conclusion: </strong>EDMAS is a reliable and valid tool for evaluating nurses' ethical decision-making ability and enhancing its ability through ethics training programs.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"26 1","pages":"35"},"PeriodicalIF":3.0,"publicationDate":"2025-03-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11907825/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143634999","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Balancing benefits and burdens: a systematic review on ethical and social dimensions of gene and cell therapies for hereditary blood diseases.","authors":"L C van Hooff, E-M Merz, A S Kidane Gebremeskel, J A de Jong, G L Burchell, J E Lunshof","doi":"10.1186/s12910-025-01188-3","DOIUrl":"10.1186/s12910-025-01188-3","url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"26 1","pages":"36"},"PeriodicalIF":3.0,"publicationDate":"2025-03-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11907911/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143634997","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}