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Impact of the life-sustaining treatment decision act on organ donation in out-of-hospital cardiac arrests in South Korea: a multi-centre retrospective study. 生命维持治疗决定法案对韩国院外心脏骤停患者器官捐献的影响:一项多中心回顾性研究。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-09-02 DOI: 10.1186/s12910-024-01090-4
Min Jae Kim, Dong Eun Lee, Jong Kun Kim, In Hwan Yeo, Haewon Jung, Jung Ho Kim, Tae Chang Jang, Sang-Hun Lee, Jinwook Park, Deokhyeon Kim, Hyun Wook Ryoo

Background: The demand for organ transplants, both globally and in South Korea, substantially exceeds the supply, a situation that might have been aggravated by the enactment of the Life-Sustaining Treatment Decision Act (LSTDA) in February 2018. This legislation may influence emergency medical procedures and the availability of organs from brain-dead donors. This study aimed to assess LSTDA's impact, introduced in February 2018, on organ donation status in out-of-hospital cardiac arrest (OHCA) patients in a metropolitan city and identified related factors.

Methods: We conducted a retrospective analysis of a regional cardiac arrest registry. This study included patients aged 16 or older with cardiac arrest and a cerebral performance category (CPC) score of 5 from January 2015 to December 2022. The exclusion criteria were CPC scores of 1-4, patients under 16 years, and patients declared dead or transferred from emergency departments. Logistic regression analysis was used to analyse factors affecting organ donation.

Results: Of the 751 patients included in this study, 47 were organ donors, with a median age of 47 years. Before the LSTDA, there were 30 organ donations, which declined to 17 after its implementation. In the organ donation group, the causes of cardiac arrest included medical (34%), hanging (46.8%), and trauma (19.2%). The adjusted odds ratio for organ donation before the LSTDA implementation was 6.12 (95% CI 3.09-12.12), with non-medical aetiology as associated factors.

Conclusion: The enactment of the LSTDA in 2018 in South Korea may be linked to reduced organ donations among patients with OHCA, underscoring the need to re-evaluate the medical and legal aspects of organ donation, especially considering end-of-life care decisions.

背景:全球和韩国对器官移植的需求都大大超过了供应量,2018 年 2 月颁布的《维持生命治疗决定法》(LSTDA)可能会加剧这种情况。这项立法可能会影响紧急医疗程序和脑死亡捐献者器官的供应。本研究旨在评估2018年2月出台的《生命维持治疗决定法》对某大都市院外心脏骤停(OHCA)患者器官捐献状况的影响,并确定相关因素:我们对一个地区性心脏骤停登记处进行了回顾性分析。本研究纳入了 2015 年 1 月至 2022 年 12 月期间年龄在 16 岁或以上、心脏骤停且脑功能分类(CPC)评分为 5 分的患者。排除标准包括 CPC 评分为 1-4 分的患者、16 岁以下的患者以及宣布死亡或从急诊科转出的患者。采用逻辑回归分析法对影响器官捐献的因素进行了分析:本研究共纳入 751 名患者,其中 47 人是器官捐献者,年龄中位数为 47 岁。LSTDA实施前,有30例器官捐献,实施后减少到17例。在器官捐献组中,心脏骤停的原因包括内科(34%)、悬吊(46.8%)和外伤(19.2%)。在《肺结核和呼吸系统疾病登记法案》实施前,器官捐献的调整后几率比为6.12(95% CI 3.09-12.12),非医疗病因是相关因素:韩国于2018年颁布了LSTDA,这可能与OHCA患者的器官捐献减少有关,强调了重新评估器官捐献的医疗和法律方面的必要性,尤其是考虑到临终关怀的决定。
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引用次数: 0
Encompassing trust in medical AI from the perspective of medical students: a quantitative comparative study. 从医学生的角度看医学人工智能中的信任:一项定量比较研究。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-09-02 DOI: 10.1186/s12910-024-01092-2
Anamaria Malešević, Mária Kolesárová, Anto Čartolovni

Background: In the years to come, artificial intelligence will become an indispensable tool in medical practice. The digital transformation will undoubtedly affect today's medical students. This study focuses on trust from the perspective of three groups of medical students - students from Croatia, students from Slovakia, and international students studying in Slovakia.

Methods: A paper-pen survey was conducted using a non-probabilistic convenience sample. In the second half of 2022, 1715 students were surveyed at five faculties in Croatia and three in Slovakia.

Results: Specifically, 38.2% of students indicated familiarity with the concept of AI, while 44.8% believed they would use AI in the future. Patient readiness for the implementation of technologies was mostly assessed as being low. More than half of the students, 59.1%, believe that the implementation of digital technology (AI) will negatively impact the patient-physician relationship and 51,3% of students believe that patients will trust physicians less. The least agreement with the statement was observed among international students, while a higher agreement was expressed by Slovak and Croatian students 40.9% of Croatian students believe that users do not trust the healthcare system, 56.9% of Slovak students agree with this view, while only 17.3% of international students share this opinion. The ability to explain to patients how AI works if they were asked was statistically significantly different for the different student groups, international students expressed the lowest agreement, while the Slovak and Croatian students showed a higher agreement.

Conclusion: This study provides insight into medical students' attitudes from Croatia, Slovakia, and international students regarding the role of artificial intelligence (AI) in the future healthcare system, with a particular emphasis on the concept of trust. A notable difference was observed between the three groups of students, with international students differing from their Croatian and Slovak colleagues. This study also highlights the importance of integrating AI topics into the medical curriculum, taking into account national social & cultural specificities that could negatively impact AI implementation if not carefully addressed.

背景介绍未来几年,人工智能将成为医疗实践中不可或缺的工具。数字化转型无疑将影响当今的医学生。本研究主要从克罗地亚学生、斯洛伐克学生和在斯洛伐克学习的留学生这三类医学生的角度来探讨信任问题:方法:采用非概率方便抽样进行纸笔调查。2022 年下半年,对克罗地亚 5 个学院和斯洛伐克 3 个学院的 1715 名学生进行了调查:具体而言,38.2%的学生表示熟悉人工智能的概念,44.8%的学生认为他们将来会使用人工智能。大部分学生认为患者对使用技术的准备程度较低。超过半数(59.1%)的学生认为,数字技术(人工智能)的应用将对医患关系产生负面影响,51.3%的学生认为患者对医生的信任度会降低。国际学生对这一说法的认同度最低,而斯洛伐克和克罗地亚学生的认同度较高,40.9%的克罗地亚学生认为用户不信任医疗系统,56.9%的斯洛伐克学生同意这一观点,而只有 17.3%的国际学生赞同这一观点。不同学生群体在被问及是否有能力向患者解释人工智能是如何工作的问题上存在显著统计学差异,留学生的认同度最低,而斯洛伐克和克罗地亚学生的认同度较高:本研究深入探讨了克罗地亚、斯洛伐克和国际学生对人工智能(AI)在未来医疗系统中的作用的态度,并特别强调了信任的概念。三组学生之间存在明显差异,留学生与克罗地亚和斯洛伐克留学生的态度不同。本研究还强调了将人工智能主题纳入医学课程的重要性,同时考虑到国家社会和文化的特殊性,如果不认真对待这些特殊性,可能会对人工智能的实施产生负面影响。
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引用次数: 0
Opportunities and challenges of a dynamic consent-based application: personalized options for personal health data sharing and utilization. 基于同意的动态应用程序的机遇与挑战:个人健康数据共享和利用的个性化选择。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-08-31 DOI: 10.1186/s12910-024-01091-3
Ah Ra Lee, Dongjun Koo, Il Kon Kim, Eunjoo Lee, Sooyoung Yoo, Ho-Young Lee

Background: The principles of dynamic consent are based on the idea of safeguarding the autonomy of individuals by providing them with personalized options to choose from regarding the sharing and utilization of personal health data. To facilitate the widespread introduction of dynamic consent concepts in practice, individuals must perceive these procedures as useful and easy to use. This study examines the user experience of a dynamic consent-based application, in particular focusing on personalized options, and explores whether this approach may be useful in terms of ensuring the autonomy of data subjects in personal health data usage.

Methods: This study investigated the user experience of MyHealthHub, a dynamic consent-based application, among adults aged 18 years or older living in South Korea. Eight tasks exploring the primary aspects of dynamic consent principles-including providing consent, monitoring consent history, and managing personalized options were provided to participants. Feedback on the experiences of testing MyHealthHub was gathered via multiple-choice and open-ended questionnaire items.

Results: A total of 30 participants provided dynamic consent through the MyHealthHub application. Most participants successfully completed all the provided tasks without assistance and regarded the personalized options favourably. Concerns about the security and reliability of the digital-based consent system were raised, in contrast to positive responses elicited in other aspects, such as perceived usefulness and ease of use.

Conclusions: Dynamic consent is an ethically advantageous approach for the sharing and utilization of personal health data. Personalized options have the potential to serve as pragmatic safeguards for the autonomy of individuals in the sharing and utilization of personal health data. Incorporating the principles of dynamic consent into real-world scenarios requires remaining issues, such as the need for powerful authentication mechanisms that bolster privacy and security, to be addressed. This would enhance the trustworthiness of dynamic consent-based applications while preserving their ethical advantages.

背景:动态同意的原则是基于保障个人自主权的理念,在共享和使用个人健康数据方面为个人提供个性化的选择。为促进动态同意概念在实践中的广泛引入,个人必须认为这些程序有用且易于使用。本研究考察了基于动态同意的应用程序的用户体验,尤其关注个性化选项,并探讨这种方法是否有助于确保数据主体在使用个人健康数据时的自主权:本研究调查了 MyHealthHub(一款基于动态同意的应用程序)的用户体验,调查对象是韩国 18 岁或以上的成年人。向参与者提供了八项任务,探索动态同意原则的主要方面,包括提供同意、监控同意历史和管理个性化选项。通过多项选择和开放式问卷调查项目收集了对 MyHealthHub 测试体验的反馈意见:共有 30 名参与者通过 MyHealthHub 应用程序提供了动态同意。大多数参与者在没有帮助的情况下成功完成了所有任务,并对个性化选项给予了好评。参与者对基于数字技术的同意系统的安全性和可靠性表示担忧,而在其他方面,如实用性和易用性方面,参与者则给予了积极的评价:动态同意是共享和使用个人健康数据的一种道德上有利的方法。在共享和使用个人健康数据时,个性化选项有可能成为个人自主权的务实保障。要将动态同意原则纳入现实世界的应用场景,还需要解决其他一些问题,例如需要建立强大的身份验证机制,以加强隐私和安全。这将提高基于动态同意的应用的可信度,同时保留其道德优势。
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引用次数: 0
Compromised informed consent due to functional health literacy challenges in Chinese hospitals. 中国医院因功能性健康知识普及困难而导致知情同意受损。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-08-23 DOI: 10.1186/s12910-024-01089-x
Dangui Zhang, Zhilin Hu, Zhuojia Wu, Ting Huang, Tingting Huang, Junhao Liu, Hongkun Sun, William Ba-Thein

Background: Medical informed consent stands as an ethical and legal requisite preceding any medical intervention. Hospitalized patients face functional health literacy (FHL) challenges when dealing with informed consent forms (ICFs). The legitimacy of ICFs and informed consent procedures in China remains substantially undisclosed. The study's aim was to investigate if Chinese patients have adequate FHL to be truly informed before providing medical consent.

Methods: In this cross-sectional, structured interview-based study, FHL was assessed within the context of the informed consent scenarios in two teaching hospitals (a 1500-bed general tertiary hospital and a 700-bed cancer hospital) affiliated with Shantou University Medical College. Twenty-seven patients admitted across clinical departments, along with their relatives (n = 59), were enrolled in the study after obtaining informed consent. The participants underwent a three-step assessment with two selected ICFs -teach-back skills, perceived understanding (perception), and informed knowledge (cognizance), with each component carrying a maximum score of 10. Data were analyzed with SPSS (version 22.0) for descriptive and inferential statistics, with consideration of significant P values as < 0.05.

Results: The median age (IQR and range) of participants was 35.5 (28 - 49 and 13 - 74) years. Most participants had only high school education (24.4%, 21/86) or below high school education (47.7%, 41/86). The median score (IQR) of FHL assessments-teach-back, perception, and cognizance-was 4.0 (2.5, 5.8), 8.0 (6.8, 8.8), and 6.5 (5.5, 8.0) out of 10, respectively. A moderate correlation was observed between the scores of cognizance and teach-back (r = 0.359, P = 0.002) or perception (r = 0.437, P < 0.001). Multivariate linear regression analysis predicted being a patient and having lower education levels as independent risk factors of inadequate FHL (Ps = 0.001). Lack of patient-centeredness in ICFs, time constraints, and poor clinical communication were identified as barriers impeding informed consent.

Conclusions: This study demonstrates inadequacy in personal FHL and impaired organizational HL, resulting in compromised informed consent in Chinese teaching hospitals. As a remedy, we propose improving the quality of ICFs and institutionally mandated outcome-focused training on informed consent for all concerned clinicians to enhance medical ethics, ensure quality health care, address patient values, and mitigate potential medical conflicts.

背景:医疗知情同意是任何医疗干预之前的道德和法律要求。住院病人在处理知情同意书(ICF)时面临着功能性健康知识(FHL)方面的挑战。在中国,ICF 和知情同意程序的合法性仍未得到充分披露。本研究旨在调查中国患者是否具备足够的功能性健康素养,以便在提供医疗同意书前获得真正的知情权:在这项以结构化访谈为基础的横断面研究中,在汕头大学医学院附属两所教学医院(拥有 1500 张床位的综合性三级甲等医院和拥有 700 张床位的肿瘤医院)的知情同意情景中对 FHL 进行了评估。在获得知情同意后,27名临床科室住院患者及其亲属(59人)被纳入研究。研究人员通过回授技能、感知理解(感知)和知情知识(认知)这两个选定的 ICF 进行了三步评估,每个部分的最高分均为 10 分。数据采用 SPSS(22.0 版)进行描述性和推论性统计分析,并考虑显著的 P 值作为结果:参与者的中位年龄(IQR 和范围)为 35.5(28 - 49 和 13 - 74)岁。大多数参与者只有高中学历(24.4%,21/86)或高中以下学历(47.7%,41/86)。FHL评估的中位数(IQR)--回授、感知和认知--分别为4.0(2.5,5.8)、8.0(6.8,8.8)和6.5(5.5,8.0)分(满分10分)。认知得分与回授(r = 0.359,P = 0.002)或感知(r = 0.437,P 结论:认知得分与回授(r = 0.359,P = 0.002)或感知(r = 0.437,P = 0.002)之间存在中度相关性:本研究表明,在中国的教学医院中,个人 FHL 的不足和组织 HL 的受损导致知情同意受到影响。作为补救措施,我们建议提高ICF的质量,并对所有相关临床医生进行以结果为中心的知情同意培训,以提高医德水平,确保医疗质量,满足患者价值,并减少潜在的医疗冲突。
{"title":"Compromised informed consent due to functional health literacy challenges in Chinese hospitals.","authors":"Dangui Zhang, Zhilin Hu, Zhuojia Wu, Ting Huang, Tingting Huang, Junhao Liu, Hongkun Sun, William Ba-Thein","doi":"10.1186/s12910-024-01089-x","DOIUrl":"10.1186/s12910-024-01089-x","url":null,"abstract":"<p><strong>Background: </strong>Medical informed consent stands as an ethical and legal requisite preceding any medical intervention. Hospitalized patients face functional health literacy (FHL) challenges when dealing with informed consent forms (ICFs). The legitimacy of ICFs and informed consent procedures in China remains substantially undisclosed. The study's aim was to investigate if Chinese patients have adequate FHL to be truly informed before providing medical consent.</p><p><strong>Methods: </strong>In this cross-sectional, structured interview-based study, FHL was assessed within the context of the informed consent scenarios in two teaching hospitals (a 1500-bed general tertiary hospital and a 700-bed cancer hospital) affiliated with Shantou University Medical College. Twenty-seven patients admitted across clinical departments, along with their relatives (n = 59), were enrolled in the study after obtaining informed consent. The participants underwent a three-step assessment with two selected ICFs -teach-back skills, perceived understanding (perception), and informed knowledge (cognizance), with each component carrying a maximum score of 10. Data were analyzed with SPSS (version 22.0) for descriptive and inferential statistics, with consideration of significant P values as < 0.05.</p><p><strong>Results: </strong>The median age (IQR and range) of participants was 35.5 (28 - 49 and 13 - 74) years. Most participants had only high school education (24.4%, 21/86) or below high school education (47.7%, 41/86). The median score (IQR) of FHL assessments-teach-back, perception, and cognizance-was 4.0 (2.5, 5.8), 8.0 (6.8, 8.8), and 6.5 (5.5, 8.0) out of 10, respectively. A moderate correlation was observed between the scores of cognizance and teach-back (r = 0.359, P = 0.002) or perception (r = 0.437, P < 0.001). Multivariate linear regression analysis predicted being a patient and having lower education levels as independent risk factors of inadequate FHL (Ps = 0.001). Lack of patient-centeredness in ICFs, time constraints, and poor clinical communication were identified as barriers impeding informed consent.</p><p><strong>Conclusions: </strong>This study demonstrates inadequacy in personal FHL and impaired organizational HL, resulting in compromised informed consent in Chinese teaching hospitals. As a remedy, we propose improving the quality of ICFs and institutionally mandated outcome-focused training on informed consent for all concerned clinicians to enhance medical ethics, ensure quality health care, address patient values, and mitigate potential medical conflicts.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":null,"pages":null},"PeriodicalIF":3.0,"publicationDate":"2024-08-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11342605/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142047559","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
Issues and implications of the life-sustaining treatment decision act: comparing the data from the survey and clinical data of inpatients at the end-of-life process. 维持生命治疗决定法案的问题和影响:比较临终过程中住院病人的调查数据和临床数据。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-08-19 DOI: 10.1186/s12910-024-01088-y
Eunjeong Song, Dongsoon Shin, Jooseon Lee, Seonyoung Yun, Minjeong Eom, Suhee Oh, Heejung Lee, Jiwan Lee, Rhayun Song

Background: Health professionals had difficulty choosing the right time to discuss life-sustaining treatments (LSTs) since the Korean Act was passed in 2018.

Objective: This study aimed to understand how patients decide to undergo LSTs in clinical practice and to compare the perceptions of these decisions among health professionals, patients, and families with suggestions to support the self-directed decisions of patients.

Research design: A retrospective observational study with electronic medical records (EMRs) and a descriptive survey was used.

Methods: The data obtained from the EMRs included all adult patients who died in end-of-life care at a university hospital in 2021. We also conducted a survey of 214 health professionals and 100 patients and their families (CNUH IRB approval no. 2022-07-006).

Results: Based on the EMR data of 916 patients in end-of-life care, 78.4% signed do-not-attempt-resuscitation consents, 5.6% completed the documents for LSTs, and 10.2% completed both forms. LST decisions were mostly made by family members (81.5%). Most survey participants agreed that meaningless LSTs should be suspended, and the decision should be made by patients. Patients and family members (42-56%) and health professionals (56-58%) recommended discussing LST suspension when the patient is still conscious but with predicted deterioration of their condition. The suffering experienced by the patient was considered to be a priority by most patients (58%) and families (54%) during the decision-making process, while health professionals considered "the possibility of the patient's recovery" to be the highest priority (43-55%).

Conclusions: There is still a significant discrepancy in the perceptions of LST decisions among health professionals, patients, and their families despite high awareness of the Act. This situation makes it challenging to implement the Act to ensure respect for the rights of patients to self-determination and dignified end-of-life. Further effort is needed to improve the awareness of LSTs and to clarify the ambiguity of document preparation timing.

背景:自2018年《韩国法案》通过以来,医护人员很难选择合适的时机讨论维持生命治疗(LST):本研究旨在了解患者在临床实践中如何决定接受 LST,并比较医护人员、患者和家属对这些决定的看法,提出支持患者自主决定的建议:研究设计:采用电子病历(EMR)和描述性调查进行回顾性观察研究:从电子病历中获得的数据包括 2021 年一家大学医院所有死于临终关怀的成年患者。我们还对214名医疗专业人员和100名患者及其家属进行了调查(中国人民大学附属医院IRB批准号:2022-07-006):根据916名临终关怀患者的EMR数据,78.4%的患者签署了 "不尝试复苏 "同意书,5.6%的患者填写了LST文件,10.2%的患者填写了两种表格。LST 决定大多由家庭成员做出(81.5%)。大多数参与调查者都认为应暂停无意义的 LST,并由患者做出决定。病人和家属(42%-56%)以及医疗专业人员(56%-58%)建议在病人仍有意识但病情预计会恶化时讨论暂停 LST 的问题。在决策过程中,大多数患者(58%)和家属(54%)认为患者遭受的痛苦是优先考虑的问题,而医疗专业人员则认为 "患者康复的可能性 "是最优先考虑的问题(43-55%):结论:尽管对该法案的认知度很高,但医疗专业人员、患者及其家属对 LST 决策的看法仍存在很大差异。这种情况使得实施该法案以确保尊重患者的自决权和有尊严地结束生命的权利面临挑战。需要进一步努力提高人们对生命末期治疗的认识,并澄清文件准备时间的模糊性。
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引用次数: 0
Qualitative studies involving users of clinical neurotechnology: a scoping review. 涉及临床神经技术用户的定性研究:范围综述。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-08-14 DOI: 10.1186/s12910-024-01087-z
Georg Starke, Tugba Basaran Akmazoglu, Annalisa Colucci, Mareike Vermehren, Amanda van Beinum, Maria Buthut, Surjo R Soekadar, Christoph Bublitz, Jennifer A Chandler, Marcello Ienca

Background: The rise of a new generation of intelligent neuroprostheses, brain-computer interfaces (BCI) and adaptive closed-loop brain stimulation devices hastens the clinical deployment of neurotechnologies to treat neurological and neuropsychiatric disorders. However, it remains unclear how these nascent technologies may impact the subjective experience of their users. To inform this debate, it is crucial to have a solid understanding how more established current technologies already affect their users. In recent years, researchers have used qualitative research methods to explore the subjective experience of individuals who become users of clinical neurotechnology. Yet, a synthesis of these more recent findings focusing on qualitative methods is still lacking.

Methods: To address this gap in the literature, we systematically searched five databases for original research articles that investigated subjective experiences of persons using or receiving neuroprosthetics, BCIs or neuromodulation with qualitative interviews and raised normative questions.

Results: 36 research articles were included and analysed using qualitative content analysis. Our findings synthesise the current scientific literature and reveal a pronounced focus on usability and other technical aspects of user experience. In parallel, they highlight a relative neglect of considerations regarding agency, self-perception, personal identity and subjective experience.

Conclusions: Our synthesis of the existing qualitative literature on clinical neurotechnology highlights the need to expand the current methodological focus as to investigate also non-technical aspects of user experience. Given the critical role considerations of agency, self-perception and personal identity play in assessing the ethical and legal significance of these technologies, our findings reveal a critical gap in the existing literature. This review provides a comprehensive synthesis of the current qualitative research landscape on neurotechnology and the limitations thereof. These findings can inform researchers on how to study the subjective experience of neurotechnology users more holistically and build patient-centred neurotechnology.

背景:新一代智能神经义肢、脑机接口(BCI)和自适应闭环脑刺激设备的兴起,加速了治疗神经和神经精神疾病的神经技术的临床应用。然而,目前仍不清楚这些新兴技术会如何影响其用户的主观体验。要为这一讨论提供信息,关键是要扎实了解当前较为成熟的技术是如何影响其用户的。近年来,研究人员使用定性研究方法来探索临床神经技术用户的主观体验。然而,目前仍缺乏对这些侧重于定性方法的最新研究成果的综述:为了填补这一文献空白,我们在五个数据库中系统检索了原创研究文章,这些文章通过定性访谈调查了使用或接受神经义肢、BCIs 或神经调控的人员的主观体验,并提出了规范性问题:结果:共收录了 36 篇研究文章,并采用定性内容分析法进行了分析。我们的研究结果综合了当前的科学文献,显示出研究重点明显集中在可用性和用户体验的其他技术方面。与此同时,这些研究还突出强调了对代理、自我感知、个人身份和主观体验的相对忽视:我们对有关临床神经技术的现有定性文献进行了综述,强调有必要扩大目前的方法论重点,以便同时研究用户体验的非技术方面。考虑到代理、自我认知和个人身份在评估这些技术的伦理和法律意义方面的关键作用,我们的研究结果揭示了现有文献中的一个重要空白。本综述全面综述了当前有关神经技术的定性研究情况及其局限性。这些发现可以为研究人员提供信息,帮助他们更全面地研究神经技术用户的主观体验,并建立以患者为中心的神经技术。
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引用次数: 0
The ethical dimension of personal health monitoring in the armed forces: a scoping review. 武装部队中个人健康监测的伦理层面:范围界定审查。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-08-10 DOI: 10.1186/s12910-024-01086-0
Dave Bovens, Eva van Baarle, Kirsten Ziesemer, Bert Molewijk

Background: Personal Health Monitoring (PHM) has the potential to enhance soldier health outcomes. To promote morally responsible development, implementation, and use of PHM in the armed forces, it is important to be aware of the inherent ethical dimension of PHM. In order to improve the understanding of the ethical dimension, a scoping review of the existing academic literature on the ethical dimension of PHM was conducted.

Methods: Four bibliographical databases (Ovid/Medline, Embase.com, Clarivate Analytics/Web of Science Core Collection, and Elsevier/SCOPUS) were searched for relevant literature from their inception to June 1, 2023. Studies were included if they sufficiently addressed the ethical dimension of PHM and were related to or claimed relevance for the military. After selection and extraction, the data was analysed using a qualitative thematic approach.

Results: A total of 9,071 references were screened. After eligibility screening, 19 articles were included for this review. The review identifies and describes three categories reflecting the ethical dimension of PHM in the military: (1) utilitarian considerations, (2) value-based considerations, and (3) regulatory responsibilities. The four main values that have been identified as being of concern are those of privacy, security, trust, and autonomy.

Conclusions: This review demonstrates that PHM in the armed forces is primarily approached from a utilitarian perspective, with a focus on its benefits, without explicit critical deliberation on PHM's potential moral downsides. Also, the review highlights a significant research gap with a specific lack of empirical studies focussing specifically on the ethical dimension of PHM. Awareness of the inherent ethical dimension of PHM in the military, including value conflicts and how to balance them, can help to contribute to a morally responsible development, implementation, and use of PHM in the armed forces.

背景:个人健康监测(PHM)具有提高士兵健康水平的潜力。为了促进武装部队在道义上负责任地开发、实施和使用 PHM,必须认识到 PHM 固有的伦理层面。为了加深对道德层面的理解,我们对现有的有关 PHM 道德层面的学术文献进行了范围审查:对四个文献数据库(Ovid/Medline、Embase.com、Clarivate Analytics/Web of Science Core Collection 和 Elsevier/SCOPUS)进行了检索,以查找从开始到 2023 年 6 月 1 日的相关文献。如果研究充分论述了公共健康管理的伦理维度,并且与军队相关或声称与军队相关,则将其纳入研究范围。经过筛选和提取后,采用定性主题方法对数据进行了分析:共筛选出 9,071 篇参考文献。经过资格筛选,本综述共纳入 19 篇文章。综述确定并描述了反映军队 PHM 伦理层面的三个类别:(1) 功利考虑,(2) 基于价值的考虑,(3) 监管责任。已确定的四个主要关注价值是隐私、安全、信任和自主:本综述表明,在武装部队中使用 PHM 主要是从功利主义的角度出发,重点关注 PHM 的益处,而没有对 PHM 潜在的道德弊端进行明确的批判性思考。此外,本综述还强调了一个重大的研究空白,即缺乏专门针对 PHM 道德层面的实证研究。认识到军队中 PHM 固有的道德维度,包括价值冲突以及如何平衡这些冲突,有助于促进军队中 PHM 在道德上负责任的发展、实施和使用。
{"title":"The ethical dimension of personal health monitoring in the armed forces: a scoping review.","authors":"Dave Bovens, Eva van Baarle, Kirsten Ziesemer, Bert Molewijk","doi":"10.1186/s12910-024-01086-0","DOIUrl":"10.1186/s12910-024-01086-0","url":null,"abstract":"<p><strong>Background: </strong>Personal Health Monitoring (PHM) has the potential to enhance soldier health outcomes. To promote morally responsible development, implementation, and use of PHM in the armed forces, it is important to be aware of the inherent ethical dimension of PHM. In order to improve the understanding of the ethical dimension, a scoping review of the existing academic literature on the ethical dimension of PHM was conducted.</p><p><strong>Methods: </strong>Four bibliographical databases (Ovid/Medline, Embase.com, Clarivate Analytics/Web of Science Core Collection, and Elsevier/SCOPUS) were searched for relevant literature from their inception to June 1, 2023. Studies were included if they sufficiently addressed the ethical dimension of PHM and were related to or claimed relevance for the military. After selection and extraction, the data was analysed using a qualitative thematic approach.</p><p><strong>Results: </strong>A total of 9,071 references were screened. After eligibility screening, 19 articles were included for this review. The review identifies and describes three categories reflecting the ethical dimension of PHM in the military: (1) utilitarian considerations, (2) value-based considerations, and (3) regulatory responsibilities. The four main values that have been identified as being of concern are those of privacy, security, trust, and autonomy.</p><p><strong>Conclusions: </strong>This review demonstrates that PHM in the armed forces is primarily approached from a utilitarian perspective, with a focus on its benefits, without explicit critical deliberation on PHM's potential moral downsides. Also, the review highlights a significant research gap with a specific lack of empirical studies focussing specifically on the ethical dimension of PHM. Awareness of the inherent ethical dimension of PHM in the military, including value conflicts and how to balance them, can help to contribute to a morally responsible development, implementation, and use of PHM in the armed forces.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":null,"pages":null},"PeriodicalIF":3.0,"publicationDate":"2024-08-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11316322/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141914668","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
Exploration of clinical ethics consultation in Uganda: a case study of Uganda Cancer Institute. 乌干达临床伦理咨询探索:乌干达癌症研究所案例研究。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-08-09 DOI: 10.1186/s12910-024-01085-1
Mayi Mayega Nanyonga, Paul Kutyabami, Olivia Kituuka, Nelson K Sewankambo

Introduction: Globally, healthcare providers (HCPs), hospital administrators, patients and their caretakers are increasingly confronted with complex moral, social, cultural, ethical, and legal dilemmas during clinical care. In high-income countries (HICs), formal and informal clinical ethics support services (CESSs) have been used to resolve bioethical conflicts among HCPs, patients, and their families. There is limited evidence about mechanisms used to resolve these issues as well as experiences and perspectives of the stakeholders that utilize them in most African countries including Uganda.

Methods: This phenomenological qualitative study utilized in-depth interviews (IDIs) and focus group discussions (FGDs) to collect data from Uganda Cancer Institute (UCI) staff, patients, and caretakers who were purposively selected. Data was analyzed deductively and inductively yielding themes and sub-themes that were used to develop a codebook.

Results: The study revealed there was no formal committee or mechanism dedicated to resolving ethical dilemmas at the UCI. Instead, ethical dilemmas were addressed in six forums: individual consultations, tumor board meetings, morbidity and mortality meetings (MMMs), core management meetings, rewards and sanctions committee meetings, and clinical departmental meetings. Participants expressed apprehension regarding the efficacy of these fora due to their non-ethics related agendas as well as members lacking training in medical ethics and the necessary experience to effectively resolve ethical dilemmas.

Conclusion: The fora employed at the UCI to address ethical dilemmas were implicit, involving decisions made through various structures without the guidance of personnel well-versed in medical or clinical ethics. There was a strong recommendation from participants to establish a multidisciplinary clinical ethics committee comprising members who are trained, skilled, and experienced in medical and clinical ethics.

导言:在全球范围内,医疗服务提供者(HCPs)、医院管理者、患者及其护理人员在临床护理过程中越来越多地面临复杂的道德、社会、文化、伦理和法律困境。在高收入国家(HICs),正规和非正规的临床伦理支持服务(CESSs)被用来解决 HCPs、患者及其家属之间的生物伦理冲突。在包括乌干达在内的大多数非洲国家,有关解决这些问题的机制以及利用这些机制的利益相关者的经验和观点的证据十分有限:这项现象学定性研究采用深入访谈(IDI)和焦点小组讨论(FGD)的方法,从乌干达癌症研究所(UCI)的工作人员、患者和护理人员中收集数据。对数据进行了演绎和归纳分析,得出的主题和次主题被用于编制编码手册:研究显示,加州大学洛杉矶分校没有专门解决伦理困境的正式委员会或机制。取而代之的是在六个论坛上解决伦理困境:个人咨询、肿瘤委员会会议、发病率和死亡率会议(MMMs)、核心管理会议、奖惩委员会会议和临床科室会议。由于这些论坛的议程与伦理无关,而且论坛成员缺乏医学伦理培训和有效解决伦理困境的必要经验,与会者对这些论坛的效果表示担忧:美国加州大学洛杉矶分校用于解决伦理困境的论坛是隐性的,涉及在没有精通医学或临床伦理学的人员指导下通过各种结构做出的决定。与会者强烈建议成立一个多学科临床伦理委员会,其成员应接受过医学和临床伦理方面的培训,具备相关技能和经验。
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引用次数: 0
Behind the scenes of research ethics committee oversight: a qualitative research study with committee chairs in the Middle East and North Africa region. 研究伦理委员会监督的幕后:对中东和北非地区委员会主席的定性研究。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-08-08 DOI: 10.1186/s12910-024-01083-3
Catherine El Ashkar, Rima Nakkash, Amal Matar, Jihad Makhoul

Background: Research cites shortcomings and challenges facing research ethics committees in many regions across the world including Arab countries. This paper presents findings from qualitative in-depth interviews with research ethics committee (REC) chairs to explore their views on the challenges they face in their work with the oversight of research involving human populations.

Methods: Virtual in-depth interviews were conducted with chairs (n = 11) from both biomedical and/or social-behavioral research ethics committees in six countries, transcribed, coded and subject to thematic analysis for recurring themes.

Results: Two sets of recurring themes impede the work of the committees and pose concerns for the quality of the research applications: (1) procedures and committee level challenges such as heavy workload, variations in member qualification, impeding bureaucratic procedures, member overwork, and intersecting socio-cultural values in the review process; (2) inconsistencies in the researchers' competence in both applied research ethics and research methodology as revealed by their applications.

Conclusions: Narratives of REC chairs are important to shed light on experiences and issues that are not captured in surveys, adding to the body of knowledge with implications for the region, and low- and middle-income countries (LMICs) in other parts of the world. International research collaborations could benefit from the findings.

背景:研究表明,包括阿拉伯国家在内的世界许多地区的研究伦理委员会都存在不足并面临挑战。本文介绍了对研究伦理委员会(REC)主席进行定性深入访谈的结果,以探讨他们对在监督涉及人类群体的研究工作中所面临的挑战的看法:对六个国家的生物医学和/或社会行为研究伦理委员会的主席(n = 11)进行了虚拟深入访谈,对访谈内容进行了转录和编码,并对重复出现的主题进行了专题分析:有两组重复出现的主题阻碍了委员会的工作,并对研究申请的质量造成了担忧:(1) 程序和委员会层面的挑战,如繁重的工作量、成员资质的差异、官僚程序的阻碍、成员过度劳累以及审查过程中相互交织的社会文化价值观;(2) 研究人员在应用研究伦理和研究方法方面的能力不一致,这一点从他们的申请中可以看出:区域经济共同体(REC)主席的叙述非常重要,可以揭示调查中没有反映的经验和问题,丰富知识体系,对该地区和世界其他地区的中低收入国家(LMICs)产生影响。国际研究合作可从调查结果中受益。
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引用次数: 0
The relationship professional commitment and ethics with patient rights: a cross-sectional descriptive study. 职业承诺和职业道德与患者权利的关系:一项横断面描述性研究。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-08-02 DOI: 10.1186/s12910-024-01084-2
Sara Mohammadnejad, Afsaneh Raiesifar, Zoleikha Karamelahi, Razhan Chehreh

Background: Ethical behavior of health workers is an important part of health services. The aim of the present study was to determine the relationship between ethics and professional commitment and its relationship with the level of respect for patient rights in medical students.

Material & methods: A cross-sectional descriptive study was conducted with the participation of nursing, midwifery and emergency medicine students of Ilam University of Medical Sciences. Sampling was done by stratified random method. The data was collected using Demographic, Professional Commitment, Professional ethics and a researcher made questioner on compliance with patient rights questionnaires.

Results: 300 students were participated. The results showed that the average score of professional ethics in middle school students is high (64.07 ± 8.01), the average score of professional commitment is also high (64.07 ± 8.01) and the score of respect for patient rights is also high (10.74). ± 83.46) was obtained. The professional ethics score it showed a positive and statistically significant relationship with the patient's rights compliance score. only professional commitment is related to gender, but the average of all three variables in different age groups and the type of residence (dormitory, private home, etc.) have meaningful statistical difference.

Conclusion: The findings of the study show that the level of ethics and professional commitment and respect for patient rights among nursing, midwifery and emergency medicine students was good. It is hoped that the results of this research will provide a basis for better planning for the development of knowledge and respect for patient rights among students.

背景:医务工作者的道德行为是医疗服务的重要组成部分。本研究旨在确定医科学生的职业道德与职业承诺之间的关系,及其与尊重患者权利程度之间的关系:本研究对伊拉姆医科大学护理、助产和急诊医学专业的学生进行了横断面描述性研究。抽样采用分层随机抽样法。使用人口统计学、职业承诺、职业道德和研究人员制作的患者权利遵守情况调查问卷收集数据:结果:300 名学生参与了调查。结果显示,中学生的职业道德平均得分较高(64.07 ± 8.01),职业承诺平均得分也较高(64.07 ± 8.01),尊重患者权利得分也较高(10.74)。在职业道德方面的平均得分(± 83.46)分。只有职业承诺与性别有关,但不同年龄组和居住地类型(宿舍、私人住宅等)的三个变量的平均值有有意义的统计学差异:研究结果表明,护理学、助产学和急诊医学专业学生的道德水平、职业承诺和尊重病人权利的情况良好。希望本研究的结果能为更好地规划学生对患者权利的了解和尊重提供依据。
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引用次数: 0
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