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Public perceptions of artificial intelligence in healthcare: ethical concerns and opportunities for patient-centered care. 公众对医疗保健领域人工智能的看法:伦理问题与以患者为中心的护理机会。
IF 3 1区 哲学
BMC Medical Ethics Pub Date : 2024-06-22 DOI: 10.1186/s12910-024-01066-4
Kaila Witkowski, Ratna Okhai, Stephen R Neely
{"title":"Public perceptions of artificial intelligence in healthcare: ethical concerns and opportunities for patient-centered care.","authors":"Kaila Witkowski, Ratna Okhai, Stephen R Neely","doi":"10.1186/s12910-024-01066-4","DOIUrl":"10.1186/s12910-024-01066-4","url":null,"abstract":"<p><strong>Background: </strong>In an effort to improve the quality of medical care, the philosophy of patient-centered care has become integrated into almost every aspect of the medical community. Despite its widespread acceptance, among patients and practitioners, there are concerns that rapid advancements in artificial intelligence may threaten elements of patient-centered care, such as personal relationships with care providers and patient-driven choices. This study explores the extent to which patients are confident in and comfortable with the use of these technologies when it comes to their own individual care and identifies areas that may align with or threaten elements of patient-centered care.</p><p><strong>Methods: </strong>An exploratory, mixed-method approach was used to analyze survey data from 600 US-based adults in the State of Florida. The survey was administered through a leading market research provider (August 10-21, 2023), and responses were collected to be representative of the state's population based on age, gender, race/ethnicity, and political affiliation.</p><p><strong>Results: </strong>Respondents were more comfortable with the use of AI in health-related tasks that were not associated with doctor-patient relationships, such as scheduling patient appointments or follow-ups (84.2%). Fear of losing the 'human touch' associated with doctors was a common theme within qualitative coding, suggesting a potential conflict between the implementation of AI and patient-centered care. In addition, decision self-efficacy was associated with higher levels of comfort with AI, but there were also concerns about losing decision-making control, workforce changes, and cost concerns. A small majority of participants mentioned that AI could be useful for doctors and lead to more equitable care but only when used within limits.</p><p><strong>Conclusion: </strong>The application of AI in medical care is rapidly advancing, but oversight, regulation, and guidance addressing critical aspects of patient-centered care are lacking. While there is no evidence that AI will undermine patient-physician relationships at this time, there is concern on the part of patients regarding the application of AI within medical care and specifically as it relates to their interaction with physicians. Medical guidance on incorporating AI while adhering to the principles of patient-centered care is needed to clarify how AI will augment medical care.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"25 1","pages":"74"},"PeriodicalIF":3.0,"publicationDate":"2024-06-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11193174/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141441133","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}
引用次数: 0
Exploring moral competence regression: a narrative approach in medical ethics education for medical students. 探索道德能力回归:医学生医学伦理教育的叙事方法。
IF 3 1区 哲学
BMC Medical Ethics Pub Date : 2024-06-21 DOI: 10.1186/s12910-024-01073-5
Martin Zielina, Jaromír Škoda, Kateřina Ivanová, Daniel Dostál, Lubica Juríčková, David Anthony Procházka, Barbora Straka, Adam Doležal
{"title":"Exploring moral competence regression: a narrative approach in medical ethics education for medical students.","authors":"Martin Zielina, Jaromír Škoda, Kateřina Ivanová, Daniel Dostál, Lubica Juríčková, David Anthony Procházka, Barbora Straka, Adam Doležal","doi":"10.1186/s12910-024-01073-5","DOIUrl":"10.1186/s12910-024-01073-5","url":null,"abstract":"<p><strong>Background: </strong>Studies from different countries report a stagnation or regression of moral competence in medical students between the first and the last year of their studies, and the value of various educational interventions remains uncertain.</p><p><strong>Methods: </strong>We used Moral Competence Test (MCT) to measure C-scores of moral competence to determine the change in the MCT C-scores between the first- and the fifth-year medical students from two medical schools in the Czech Republic in the academic year 2022/2023 and to analyze factors associated with the C-scores (observational study). In addition, for the first-year students, we compared the results of the MCT before and after an intervention in medical ethics curriculum (interventional study). We used a cross-sectional and descriptive design for the observational study. Students completed the MCT, consisting of two moral dilemmas (Worker´s Dilemma and Doctor´s Dilemma), the results measured by the C-score, which represents moral competence.</p><p><strong>Results: </strong>In total, 685 students participated in the observational study. Objective 1: based on the analysis of the C-score, we observed a decrease in moral competence between the first and the fifth-year medical students (p < .001). Objective 2: we did not observe a statistically significant effect of gender (p = .278), or self-rated religiosity (p = .163). Objective 3: in the interventional study, 440 students participated in the pretest and 422 students participated in the posttest. The test of statistical significance found no improvement in students' moral competence after the intervention (p = .253).</p><p><strong>Conclusion: </strong>Medical students show a regression in moral competence during medical education; it was lower in medical students in their fifth year, compared to the first-year medical students without the effect of gender, or self-rated religiosity. Although educational intervention consisting of multiple tools of medical ethics teaching (PBL, CBL, KMDD and StorED) did not lead to increase in moral competence, the longitudinal effect of such intervention remains to be seen.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"25 1","pages":"73"},"PeriodicalIF":3.0,"publicationDate":"2024-06-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11191321/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141437848","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}
引用次数: 0
"I feel like I'm walking on eggshells": a qualitative study of moral distress among Chinese emergency doctors. "我感觉像在蛋壳上行走":中国急诊医生道德困扰的定性研究。
IF 3 1区 哲学
BMC Medical Ethics Pub Date : 2024-06-20 DOI: 10.1186/s12910-024-01074-4
Jiajun Liu, Fengling Dai, Qitai Song, Jian Sun, Yao Liu
{"title":"\"I feel like I'm walking on eggshells\": a qualitative study of moral distress among Chinese emergency doctors.","authors":"Jiajun Liu, Fengling Dai, Qitai Song, Jian Sun, Yao Liu","doi":"10.1186/s12910-024-01074-4","DOIUrl":"10.1186/s12910-024-01074-4","url":null,"abstract":"<p><strong>Background: </strong>While the number of emergency patients worldwide continues to increase, emergency doctors often face moral distress. It hampers the overall efficiency of the emergency department, even leading to a reduction in human resources.</p><p><strong>Aim: </strong>This study explored the experience of moral distress among emergency department doctors and analyzed the causes of its occurrence and the strategies for addressing it.</p><p><strong>Method: </strong>Purposive and snowball sampling strategies were used in this study. Data were collected through in-depth, semi-structured interviews with 10 doctors working in the emergency department of a tertiary general hospital in southwest China. The interview data underwent processing using the Nvivo 14 software. The data analysis was guided by Colaizzi's phenomenological analysis method.</p><p><strong>Study findings: </strong>This study yielded five themes: (1) imbalance between Limited Medical Resources and High-Quality Treatment Needs; (2) Ineffective Communication with Patients; (3) Rescuing Patients With no prospect of treatment; (4) Challenges in Sustaining Optimal Treatment Measures; and (5) Strategies for Addressing Moral Distress.</p><p><strong>Conclusion: </strong>The moral distress faced by emergency doctors stems from various aspects. Clinical management and policymakers can alleviate this distress by enhancing the dissemination of emergency medical knowledge to the general public, improving the social and economic support systems, and strengthening multidisciplinary collaboration and doctors' communication skills.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"25 1","pages":"72"},"PeriodicalIF":3.0,"publicationDate":"2024-06-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11188161/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141433502","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}
引用次数: 0
Telling the truth to patients before hip fracture surgery. 在髋部骨折手术前告诉病人真相。
IF 3 1区 哲学
BMC Medical Ethics Pub Date : 2024-06-19 DOI: 10.1186/s12910-024-01067-3
Rawan Masarwa, Merav Ben Natan, Yaron Berkovich
{"title":"Telling the truth to patients before hip fracture surgery.","authors":"Rawan Masarwa, Merav Ben Natan, Yaron Berkovich","doi":"10.1186/s12910-024-01067-3","DOIUrl":"10.1186/s12910-024-01067-3","url":null,"abstract":"<p><strong>Background: </strong>Hip fracture repair surgery carries a certain mortality risk, yet evidence suggests that orthopedic surgeons often refrain from discussing this issue with patients prior to surgery.</p><p><strong>Aim: </strong>This study aims to examine whether orthopedic surgeons raise the issue of one-year post-surgery mortality before hip fracture repair surgery and to explore factors influencing this decision.</p><p><strong>Method: </strong>The study employs a cross-sectional design, administering validated digital questionnaires to 150 orthopedic surgeons.</p><p><strong>Results: </strong>A minority of orthopedic surgeons reported always informing patients about the risk of mortality in the year following hip fracture surgery. The main reasons for not discussing this risk were a desire to avoid frightening patients, time constraints, and concerns about undermining patient hope. Orthopedic surgeons reported a medium-high level of perceived self-efficacy, with higher self-efficacy associated with a reduced likelihood of discussing one-year mortality risk. Conversely, older age and holding a specialist status in orthopedic surgery were associated with an increased likelihood of discussing this risk with patients.</p><p><strong>Conclusions: </strong>These findings suggest a need for interventions to address communication barriers and ensure consistent provision of essential information to patients undergoing hip fracture surgery. Additionally, they highlight the importance of considering individual factors such as self-efficacy, age, and expertise in designing strategies to improve patient-provider communication in orthopedic care settings.</p><p><strong>Trial registration: </strong>The study doesn`t report the results of a health care intervention.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"25 1","pages":"71"},"PeriodicalIF":3.0,"publicationDate":"2024-06-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11186136/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141428318","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}
引用次数: 0
Concept analysis of conscience-based nursing care: a hybrid approach of Schwartz-Barcott and Kim's hybrid model. 良心护理的概念分析:Schwartz-Barcott 和 Kim 混合模式的混合方法。
IF 3 1区 哲学
BMC Medical Ethics Pub Date : 2024-06-18 DOI: 10.1186/s12910-024-01070-8
Soheyla Kalantari, Mahnaz Modanloo, Abbas Ebadi, Homeira Khoddam
{"title":"Concept analysis of conscience-based nursing care: a hybrid approach of Schwartz-Barcott and Kim's hybrid model.","authors":"Soheyla Kalantari, Mahnaz Modanloo, Abbas Ebadi, Homeira Khoddam","doi":"10.1186/s12910-024-01070-8","DOIUrl":"10.1186/s12910-024-01070-8","url":null,"abstract":"<p><strong>Background: </strong>The nursing profession considers conscience as the foundation and cornerstone of clinical practice, which significantly influences professional decision-making and elevates the level of patient care. However, a precise definition of conscience in the nursing field is lacking, making it challenging to measure. To address this issue, this study employed the hybrid approach of Schwartz Barcott and Kim to analyze the concept of conscience-based nursing care.</p><p><strong>Methods: </strong>This approach involves a three-phase process; theoretical, fieldwork, and analytical. A systematic literature review was conducted using electronic databases during the first phase to find relevant papers. The content of 42 articles that met the inclusion criteria was extracted to determine the attributes, antecedents, and consequences of consciousness care using thematic analysis. Based on the working definition as a product of this phase, the plan of doing the fieldwork phase was designed. During this phase, data were collected through interviews with nurses all of whom were responsible for patient care in hospitals. In this phase, 5 participants were chosen for in-depth interviewing by purposeful sampling. Data were analyzed using directed content analysis. The findings of the theoretical and fieldwork phases were integrated and the final definition was derived.</p><p><strong>Results: </strong>The integration of the theoretical and fieldwork phases resulted in identifying four key characteristics of conscience-based nursing care. Firstly, it involves providing professional care with a conscientious approach. Secondly, ethics is at the core of conscience-based care. Thirdly, external spirituality plays a significant role in shaping one's conscience in this context. Finally, conscience-based nursing care is both endogenous and exogenous, with professional commitment being the central focus of care.</p><p><strong>Conclusion: </strong>Conscience-based nursing care is an essential component of ethical care, which elevates clinical practice to professional care. It requires the integration of individual and social values, influenced by personal beliefs and cultural backgrounds, and supported by professional competence, resources, and a conducive organizational atmosphere in the healthcare field. This approach leads to the provision of responsive care, moral integrity, and individual excellence, ultimately culminating in the development of professionalism in nursing.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"25 1","pages":"70"},"PeriodicalIF":3.0,"publicationDate":"2024-06-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11184846/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141421992","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}
引用次数: 0
For, against, and beyond: healthcare professionals' positions on Medical Assistance in Dying in Spain. 支持、反对和超越:西班牙医护人员对临终医疗协助的立场。
IF 3 1区 哲学
BMC Medical Ethics Pub Date : 2024-06-14 DOI: 10.1186/s12910-024-01069-1
Iris Parra Jounou, Rosana Triviño-Caballero, Maite Cruz-Piqueras
{"title":"For, against, and beyond: healthcare professionals' positions on Medical Assistance in Dying in Spain.","authors":"Iris Parra Jounou, Rosana Triviño-Caballero, Maite Cruz-Piqueras","doi":"10.1186/s12910-024-01069-1","DOIUrl":"10.1186/s12910-024-01069-1","url":null,"abstract":"<p><strong>Background: </strong>In 2021, Spain became the first Southern European country to grant and provide the right to euthanasia and medically assisted suicide. According to the law, the State has the obligation to ensure its access through the health services, which means that healthcare professionals' participation is crucial. Nevertheless, its implementation has been uneven. Our research focuses on understanding possible ethical conflicts that shape different positions towards the practice of Medical Assistance in Dying, on identifying which core ideas may be underlying them, and on suggesting possible reasons for this disparity. The knowledge acquired contributes to understanding its complexity, shedding light into ambivalent profiles and creating strategies to increase their participation.</p><p><strong>Methods: </strong>We conducted an exploratory qualitative research study by means of semi-structured interviews (1 h) with 25 physicians and nurses from primary care (12), hospital care (7), and palliative care (6), 17 women and 8 men, recruited from Madrid, Catalonia, and Andalusia between March and May 2023. Interviews were recorded, transcribed, and coded in Atlas.ti software by means of thematic and interpretative methods to develop a conceptual model.</p><p><strong>Results: </strong>We identified four approaches to MAiD: Full Support (FS), Conditioned Support (CS), Conditioned Rejection (CR), and Full Rejection (FR). Full Support and Full Rejection fitted the traditional for and against positions on MAiD. Nevertheless, there was a gray area in between represented by conditioned profiles, whose participation cannot be predicted beforehand. The profiles were differentiated considering their different interpretations of four core ideas: end-of-life care, religion, professional duty/deontology, and patient autonomy. These ideas can intersect, which means that participants' positions are multicausal and complex. Divergences between profiles can be explained by different sources of moral authority used in their moral reasoning and their individualistic or relational approach to autonomy.</p><p><strong>Conclusions: </strong>There is ultimately no agreement but rather a coexistence of plural moral perspectives regarding MAiD among healthcare professionals. Comprehending which cases are especially difficult to evaluate or which aspects of the law are not easy to interpret will help in developing new strategies, clarifying the legal framework, or guiding moral reasoning and education with the aim of reducing unpredictable non-participations in MAID.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"25 1","pages":"69"},"PeriodicalIF":3.0,"publicationDate":"2024-06-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11177400/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141322036","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}
引用次数: 0
Ethical regulation of biomedical research in Brazil: a quality improvement initiative. 巴西生物医学研究的伦理监管:质量改进倡议。
IF 3 1区 哲学
BMC Medical Ethics Pub Date : 2024-06-10 DOI: 10.1186/s12910-024-01065-5
Daniel Ribeiro Paes de Castro, Camilo Hernan Manchola Castillo, João Paulo Dias Ferreira, João Paulo Alves Oliveira, Tassila Fernandes Kirsten, Paulo Henrique Condeixa de França, Lisiane Silveira Zavalhia, Regina Kuhmmer Notti, Renata Kochhann, Sérgio Luís Amantéa
{"title":"Ethical regulation of biomedical research in Brazil: a quality improvement initiative.","authors":"Daniel Ribeiro Paes de Castro, Camilo Hernan Manchola Castillo, João Paulo Dias Ferreira, João Paulo Alves Oliveira, Tassila Fernandes Kirsten, Paulo Henrique Condeixa de França, Lisiane Silveira Zavalhia, Regina Kuhmmer Notti, Renata Kochhann, Sérgio Luís Amantéa","doi":"10.1186/s12910-024-01065-5","DOIUrl":"10.1186/s12910-024-01065-5","url":null,"abstract":"<p><strong>Background: </strong>Q-CEP (Qualificação dos Comitês de Ética em Pesquisa que compõem o Sistema CEP/Conep) is a nationwide project resulting from a partnership between the Brazilian National Research Ethics Commission (Conep), the Ministry of Health and Hospital Moinhos de Vento (HMV). It was developed to consolidate policy for ethical review of research with human beings in all members of the CEP/Conep System, Brazil's national system of institutional review boards. The aim of this study was therefore to report on the experience and results of the Q-CEP project.</p><p><strong>Methods: </strong>An observational, retrospective study includes data from the Q-CEP, obtained from visits to all the institutional research ethics committees (RECs) in the country. The actions implemented by Q-CEP were part of a two-step process: (i) training visits to each REC; (ii) development of distance learning modules on strategic topics pertaining to research ethics evaluation. The data presented herein cover step one (training visits), defined by Q-CEP as the diagnostic stage of the project. For a country with social and economics inequalities such as Brazil, this is a particularly important stage; an accurate picture of reality is needed to inform planning of quality improvement strategies.</p><p><strong>Results: </strong>In 2019-2021, Q-CEP visited 832 RECs and trained 11,197 people. This sample covered almost all active RECs in the country; only 4 (0.5%) were not evaluated. Of the 94 items evaluated, 62% did not reach the target of at least 80% compliance and around 1/4 (26%) were below 50% compliance. The diagnostic stage of the process revealed inadequacies on the part of the RECs in their ethical reviews. The analysis of informed consent forms showed compliance in only 131 RECs (15.74%). The description of pending issues made by RECs in their reports was compliant in 19.33% (n = 161). Administrative and operational aspects were also considered inadequate by more than half of the RECs.</p><p><strong>Conclusions: </strong>Overall, Brazilian RECs showed poor compliance in several aspects of their operation, both in ethics evaluation and in other processes, which justifies additional training. The Q-CEP project is part of a quality improvement policy promoted by the Brazilian Ministry of Health. The data obtained in the diagnostic step of the project have contributed to the qualification and consolidation of one of the world's largest research ethics evaluation systems.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"25 1","pages":"68"},"PeriodicalIF":3.0,"publicationDate":"2024-06-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11163760/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141302143","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}
引用次数: 0
Perspectives of researchers, science policy makers and research ethics committee members on the feedback of individual genetic research findings in African genomics research. 研究人员、科学政策制定者和研究伦理委员会成员对非洲基因组学研究中个人基因研究成果反馈的看法。
IF 3 1区 哲学
BMC Medical Ethics Pub Date : 2024-06-07 DOI: 10.1186/s12910-024-01068-2
Faith Musvipwa, Ambroise Wonkam, Benjamin Berkman, Jantina de Vries
{"title":"Perspectives of researchers, science policy makers and research ethics committee members on the feedback of individual genetic research findings in African genomics research.","authors":"Faith Musvipwa, Ambroise Wonkam, Benjamin Berkman, Jantina de Vries","doi":"10.1186/s12910-024-01068-2","DOIUrl":"10.1186/s12910-024-01068-2","url":null,"abstract":"<p><strong>Background: </strong>Genetic research can yield information that is unrelated to the study's objectives but may be of clinical or personal interest to study participants. There is an emerging but controversial responsibility to return some genetic research results, however there is little evidence available about the views of genomic researchers and others on the African continent.</p><p><strong>Methods: </strong>We conducted a continental survey to solicit perspectives of researchers, science policy makers and research ethics committee members on the feedback of individual genetic research findings in African genomics research.</p><p><strong>Results: </strong>A total of 110 persons participated in the survey with 51 complete and 59 incomplete surveys received. Data was summarised using descriptive analysis. Overall, our respondents believed that individual genetic research results that are clinically actionable should be returned to study participants apparently because participants have a right to know things about their health, and it might also be a means for research participation to be recognized. Nonetheless, there is a need for development of precise guidance on how to return individual genetic research findings in African genomics research.</p><p><strong>Discussion: </strong>Participants should receive information that could promote a healthier lifestyle; only clinically actionable findings should be returned, and participants should receive all important information that is directly relevant to their health. Nevertheless, detailed guidelines should inform what ought to be returned. H3Africa guidelines stipulate that it is generally considered good practice for researchers to feedback general study results, but there is no consensus about whether individual genomic study results should also be fed back. The decision on what individual results to feedback, if any, is very challenging and the specific context is important to make an appropriate determination.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"25 1","pages":"67"},"PeriodicalIF":3.0,"publicationDate":"2024-06-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11157929/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141288978","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}
引用次数: 0
Determining capacity of people with dementia to take part in research: an electronic survey study of researcher confidence, competence and training needs. 确定痴呆症患者参与研究的能力:关于研究人员信心、能力和培训需求的电子调查研究。
IF 3 1区 哲学
BMC Medical Ethics Pub Date : 2024-05-28 DOI: 10.1186/s12910-024-01056-6
Sarah Griffiths, Victoria Shepherd, Anna Volkmer
{"title":"Determining capacity of people with dementia to take part in research: an electronic survey study of researcher confidence, competence and training needs.","authors":"Sarah Griffiths, Victoria Shepherd, Anna Volkmer","doi":"10.1186/s12910-024-01056-6","DOIUrl":"10.1186/s12910-024-01056-6","url":null,"abstract":"<p><strong>Background: </strong>Researchers are required to determine whether a person has capacity to consent to a research study before they are able to participate. The Mental Capacity Act and accompanying Code of Practice for England and Wales provide some guidance on this process, but researchers have identified that it can be difficult to determine capacity to consent when a person has complex cognitive or communication needs. This study aimed to understand the experiences and opinions of researchers who recruit people with dementia to research projects, to inform the future development of training resources.</p><p><strong>Methods: </strong>A mixed method, cross-sectional, electronic survey was circulated via social media and research networks in England and Wales. The survey remained open for ten weeks and included open and closed questions exploring respondents' confidence in determining capacity in the context of recruiting people with dementia to consent, their views on training and support they have experienced and their suggestions for future training and support needs.</p><p><strong>Results: </strong>60 respondents completed the survey from across England and Wales. Although 75% of respondents had experience of determining capacity to consent with people with dementia to research, only 13% rated themselves as feeling 'very confident' in this. Qualitative content analysis of open responses led to the generation of six themes, explaining researchers' confidence, competence and future training needs in this area: (1) Researcher uncertainties, (2) Lack of time, (3) Balancing information complexity with accessibility, (4) Gatekeepers, (5) Existing enablers and (6) Envisioning future training.</p><p><strong>Conclusions: </strong>Researchers would benefit from specific training in undertaking conversations around consent with people with dementia. People with dementia may have fluctuating capacity, and despite support from caregivers, researchers have little practical guidance on methods of determining a person's ability to understand or appreciate the information they have provided during the consent process. Given the development of large complex trials within dementia research, there is an urgency to develop specific and practical guidance and training for researchers working with people with dementia and their families.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"25 1","pages":"65"},"PeriodicalIF":3.0,"publicationDate":"2024-05-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11131177/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141158797","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}
引用次数: 0
Using symbiotic empirical ethics to explore the significance of relationships to clinical ethics: findings from the Reset Ethics research project. 利用共生实证伦理学探索关系对临床伦理学的意义:重置伦理学研究项目的发现。
IF 3 1区 哲学
BMC Medical Ethics Pub Date : 2024-05-28 DOI: 10.1186/s12910-024-01053-9
Caroline A B Redhead, Lucy Frith, Anna Chiumento, Sara Fovargue, Heather Draper
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