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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 Q1 ETHICS Pub Date : 2024-05-28 DOI: 10.1186/s12910-024-01056-6
Sarah Griffiths, Victoria Shepherd, Anna Volkmer

Background: 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.

Methods: 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.

Results: 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.

Conclusions: 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.

背景:研究人员必须在某人能够参与研究之前,确定其是否有能力同意参与研究。英格兰和威尔士的《心智能力法案》及相应的《行为准则》为这一过程提供了一些指导,但研究人员发现,当一个人有复杂的认知或交流需求时,很难确定其是否有能力同意。本研究旨在了解招募痴呆症患者参与研究项目的研究人员的经验和意见,为今后培训资源的开发提供参考:通过英格兰和威尔士的社交媒体和研究网络发布了一项混合方法横断面电子调查。调查持续十周,包括开放式和封闭式问题,探讨受访者在征得痴呆症患者同意的情况下确定行为能力的信心、他们对所经历的培训和支持的看法以及对未来培训和支持需求的建议:来自英格兰和威尔士的 60 名受访者完成了调查。尽管 75% 的受访者在确定痴呆症患者同意参与研究的能力方面有过经验,但只有 13% 的受访者认为自己对此 "非常有信心"。对公开回复的定性内容分析产生了六个主题,解释了研究人员在这一领域的信心、能力和未来培训需求:(1) 研究人员的不确定性,(2) 缺乏时间,(3) 平衡信息的复杂性与可及性,(4) 守门人,(5) 现有的促进因素,(6) 未来培训设想:研究人员将受益于与痴呆症患者就同意问题进行对话的专门培训。痴呆症患者的行为能力可能会有波动,尽管有护理人员的支持,但研究人员对于如何确定患者是否有能力理解或领会他们在同意过程中提供的信息几乎没有实际指导。鉴于痴呆症研究中大型复杂试验的发展,为痴呆症患者及其家人工作的研究人员制定具体实用的指导和培训迫在眉睫。
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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 Q1 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

Background: At the beginning of the coronavirus (Covid-19) pandemic, many non-Covid healthcare services were suspended. In April 2020, the Department of Health in England mandated that non-Covid services should resume, alongside the continuing pandemic response. This 'resetting' of healthcare services created a unique context in which it became critical to consider how ethical considerations did (and should) underpin decisions about integrating infection control measures into routine healthcare practices. We draw on data collected as part of the 'NHS Reset Ethics' project, which explored the everyday ethical challenges of resetting England's NHS maternity and paediatrics services during the pandemic.

Methods: Healthcare professionals and members of the public participated in interviews and focus group discussions. The qualitative methods are reported in detail elsewhere. The focus of this article is our use of Frith's symbiotic empirical ethics methodology to work from our empirical findings towards the normative suggestion that clinical ethics should explicitly attend to the importance of relationships in clinical practice. This methodology uses a five-step approach to refine and develop ethical theory based on a naturalist account of ethics that sees practice and theory as symbiotically related.

Results: The Reset project data showed that changed working practices caused ethical challenges for healthcare professionals, and that infection prevention and control measures represented harmful barriers to the experience of receiving and offering care. For healthcare professionals, offering care as part of a relational interaction was an ethically important dimension of healthcare delivery.

Conclusions: Our findings suggest that foregrounding the importance of relationships across a hospital community will better promote the ethically important multi-directional expression of caring between healthcare professionals, patients, and their families. We offer two suggestions for making progress towards such a relational approach. First, that there is a change of emphasis in clinical ethics practice to explicitly acknowledge the importance of the relationships (including with their healthcare team) within which the patient is held. Second, that organisational decision-making should take into account the moral significance afforded to caring relationships by healthcare professionals, and the role such relationships can play in the negotiation of ethical challenges.

背景:冠状病毒(Covid-19)大流行之初,许多非冠状病毒医疗保健服务被暂停。2020 年 4 月,英格兰卫生部规定,在继续开展大流行应对工作的同时,应恢复非 Covid 服务。医疗保健服务的 "重启 "创造了一个独特的环境,在此环境下,考虑如何(以及应该)将伦理因素作为将感染控制措施纳入常规医疗保健实践的决策依据变得至关重要。我们借鉴了 "英国国家医疗服务系统重设伦理 "项目中收集的数据,该项目探讨了大流行期间英国国家医疗服务系统重设产科和儿科服务所面临的日常伦理挑战。有关定性方法的详细报道见其他章节。本文的重点是我们使用弗雷斯的共生经验伦理学方法论,从我们的经验发现出发,提出规范性建议,即临床伦理学应明确关注临床实践中人际关系的重要性。该方法论采用五步方法来完善和发展伦理学理论,其基础是将实践与理论视为共生关系的自然主义伦理学论述:Reset 项目数据显示,工作实践的改变给医护人员带来了伦理挑战,感染预防和控制措施对接受和提供护理的体验构成了有害障碍。对医护人员而言,提供护理是关系互动的一部分,是提供医疗服务的一个重要伦理维度:我们的研究结果表明,强调医院社区关系的重要性将更好地促进医护人员、患者及其家属之间在伦理上重要的多向关怀表达。我们提出了两点建议,以便在采用这种关系方法方面取得进展。第一,改变临床伦理实践的重点,明确承认病人所处关系(包括与医护团队的关系)的重要性。其次,组织决策应考虑到医护专业人员对关爱关系所赋予的道德意义,以及这种关系在应对伦理挑战的谈判中所能发挥的作用。
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引用次数: 0
The concept of intersectionality in bioethics: a systematic review. 生物伦理学中的交叉性概念:系统回顾。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-05-23 DOI: 10.1186/s12910-024-01057-5
Lisa Brünig, Hannes Kahrass, Sabine Salloch

Background: Intersectionality is a concept that originated in Black feminist movements in the US-American context of the 1970s and 1980s, particularly in the work of feminist scholar and lawyer Kimberlé W. Crenshaw. Intersectional approaches aim to highlight the interconnectedness of gender and sexuality with other social categories, such as race, class, age, and ability to look at how individuals are discriminated against and privileged in institutions and societal power structures. Intersectionality is a "traveling concept", which also made its way into bioethical research.

Methods: We conducted a systematic review to answer the question of where and how the concept of intersectionality is applied in bioethical research. The PubMed and Web of Science databases were systematically searched and 192 articles addressing bioethical topics and intersectionality were finally included.

Results: The qualitative analysis resulted in a category system with five main categories: (1) application purpose and function, (2) social dimensions, (3) levels, (4) health-care disciplines and academic fields, and (5) challenges, limitations, and critique. The variety of academic fields and health-care disciplines working with the concept ranges from psychology, through gynaecology to palliative care and deaf studies. Important functions that the concept of intersectionality fulfils in bioethical research are making inequities visible, creating better health data collections and embracing self-reflection. Intersectionality is also a critical praxis and fits neatly into the overarching goal of bioethics to work toward social justice in health care. Intersectionality aims at making research results relevant for respective communities and patients, and informs the development of policies.

Conclusions: This systematic review is, to the best of our knowledge, the first one to provide a full overview of the reference to intersectionality in bioethical scholarship. It creates a basis for future research that applies intersectionality as a theoretical and methodical tool for analysing bioethical questions.

背景:交叉性(Intersectionality)这一概念起源于 20 世纪 70 年代和 80 年代美 国黑人女权运动,特别是女权学者兼律师金伯利-W-克伦肖(Kimberlé W. Crenshaw)的著作。交叉性方法旨在强调性别和性与其他社会类别(如种族、阶级、年龄和能力)之间的相互联系,以研究个人如何在机构和社会权力结构中受到歧视和享有特权。交叉性是一个 "旅行概念",它也进入了生物伦理研究领域:我们进行了一项系统性回顾,以回答交叉性概念在生命伦理学研究中的应用地点和方式。我们对 PubMed 和 Web of Science 数据库进行了系统检索,最终收录了 192 篇涉及生命伦理主题和交叉性的文章:定性分析得出了一个类别系统,包括五个主要类别:(1) 应用目的和功能,(2) 社会维度,(3) 层次,(4) 医疗保健学科和学术领域,以及 (5) 挑战、限制和批评。使用这一概念的学术领域和医疗保健学科多种多样,从心理学到妇科,再到姑息治疗和聋人研究。交叉性概念在生物伦理研究中发挥的重要作用包括:使不平等现象清晰可见、建立更好的健康数据收集系统以及进行自我反思。交叉性也是一种批判性实践,与生命伦理学在医疗保健领域努力实现社会公正的总体目标不谋而合。交叉性旨在使研究成果与相关社区和患者息息相关,并为政策的制定提供信息:据我们所知,这篇系统性综述是第一篇全面概述生命伦理学学术研究中交叉性的综述。它为今后将交叉性作为分析生物伦理问题的理论和方法工具的研究奠定了基础。
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引用次数: 0
Respect for bioethical principles and human rights in prisons: a systematic review on the state of the art. 监狱中对生物伦理原则和人权的尊重:对最新情况的系统回顾。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-05-22 DOI: 10.1186/s12910-024-01049-5
Massimiliano Esposito, Konrad Szocik, Emanuele Capasso, Mario Chisari, Francesco Sessa, Monica Salerno

Background: Respect for human rights and bioethical principles in prisons is a crucial aspect of society and is proportional to the well-being of the general population. To date, these ethical principles have been lacking in prisons and prisoners are victims of abuse with strong repercussions on their physical and mental health.

Methods: A systematic review was performed, through a MESH of the following words (bioethics) AND (prison), (ethics) AND (prison), (bioethics) AND (jail), (ethics) AND (jail), (bioethics) AND (penitentiary), (ethics) AND (penitentiary), (prison) AND (human rights). Inclusion and exclusion criteria were defined and after PRISMA, 17 articles were included in the systematic review.

Results: Of the 17 articles, most were prevalence studies (n.5) or surveys (n.4), followed by cross-sectional studies (n.3), qualitative studies (n.1), retrospective (n.1) and an explanatory sequential mixed-methods study design (n.1). In most cases, the studies associated bioethics with prisoners' access to treatment for various pathologies such as vaccinations, tuberculosis, hepatitis, HIV, it was also found that bioethics in prisons was related to the mental health of prisoners, disability, ageing, the condition of women, the risk of suicide or with the request for end-of-life by prisoners. The results showed shortcomings in the system of maintaining bioethical principles and respect for human rights.

Conclusions: Prisoners, in fact, find it difficult to access care, and have an increased risk of suicide and disability. Furthermore, they are often used as improper organ donors and have constrained autonomy that also compromises their willingness to have end-of-life treatments. In conclusion, prison staff (doctors, nurses, warders, managers) must undergo continuous refresher courses to ensure compliance with ethical principles and human rights in prisons.

背景:在监狱中尊重人权和生物伦理原则是社会的一个重要方面,与普通民众的福祉息息相关。迄今为止,监狱中一直缺乏这些伦理原则,囚犯成为虐待行为的受害者,对他们的身心健康造成了严重影响:通过对以下词条进行 MESH(生物伦理学)和(监狱)、(伦理学)和(监狱)、(生物伦理学)和(监狱)、(伦理学)和(监狱)、(生物伦理学)和(感化院)、(伦理学)和(感化院)、(监狱)和(人权))进行了系统回顾。界定了纳入和排除标准,经过 PRISMA,17 篇文章被纳入系统性综述:在这 17 篇文章中,大多数是流行病学研究(5 篇)或调查(4 篇),其次是横断面研究(3 篇)、定性研究(1 篇)、回顾性研究(1 篇)和解释性顺序混合方法研究设计(1 篇)。在大多数情况下,研究将生命伦理学与囚犯获得各种疾病的治疗联系在一起,如疫苗接 种、肺结核、肝炎、艾滋病,研究还发现监狱中的生命伦理学与囚犯的心理健康、残疾、老龄 化、妇女状况、自杀风险或囚犯的临终要求有关。研究结果表明,维护生物伦理原则和尊重人权的制度存在缺陷:事实上,囚犯很难获得医疗服务,自杀和残疾的风险增加。此外,他们经常被用作不适当的器官捐献者,自主权受到限制,这也影响了他们接受临终治疗的意愿。总之,监狱工作人员(医生、护士、狱警、管理人员)必须不断参加进修课程,以确保遵守监狱中的伦理原则和人权。
{"title":"Respect for bioethical principles and human rights in prisons: a systematic review on the state of the art.","authors":"Massimiliano Esposito, Konrad Szocik, Emanuele Capasso, Mario Chisari, Francesco Sessa, Monica Salerno","doi":"10.1186/s12910-024-01049-5","DOIUrl":"10.1186/s12910-024-01049-5","url":null,"abstract":"<p><strong>Background: </strong>Respect for human rights and bioethical principles in prisons is a crucial aspect of society and is proportional to the well-being of the general population. To date, these ethical principles have been lacking in prisons and prisoners are victims of abuse with strong repercussions on their physical and mental health.</p><p><strong>Methods: </strong>A systematic review was performed, through a MESH of the following words (bioethics) AND (prison), (ethics) AND (prison), (bioethics) AND (jail), (ethics) AND (jail), (bioethics) AND (penitentiary), (ethics) AND (penitentiary), (prison) AND (human rights). Inclusion and exclusion criteria were defined and after PRISMA, 17 articles were included in the systematic review.</p><p><strong>Results: </strong>Of the 17 articles, most were prevalence studies (n.5) or surveys (n.4), followed by cross-sectional studies (n.3), qualitative studies (n.1), retrospective (n.1) and an explanatory sequential mixed-methods study design (n.1). In most cases, the studies associated bioethics with prisoners' access to treatment for various pathologies such as vaccinations, tuberculosis, hepatitis, HIV, it was also found that bioethics in prisons was related to the mental health of prisoners, disability, ageing, the condition of women, the risk of suicide or with the request for end-of-life by prisoners. The results showed shortcomings in the system of maintaining bioethical principles and respect for human rights.</p><p><strong>Conclusions: </strong>Prisoners, in fact, find it difficult to access care, and have an increased risk of suicide and disability. Furthermore, they are often used as improper organ donors and have constrained autonomy that also compromises their willingness to have end-of-life treatments. In conclusion, prison staff (doctors, nurses, warders, managers) must undergo continuous refresher courses to ensure compliance with ethical principles and human rights in prisons.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"25 1","pages":"62"},"PeriodicalIF":3.0,"publicationDate":"2024-05-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11110298/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141077090","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
A scoping review of ethics review processes during public health emergencies in Africa. 非洲公共卫生突发事件期间伦理审查程序的范围界定审查。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-05-22 DOI: 10.1186/s12910-024-01054-8
Kingsley Orievulu, Alex Hinga, Busisiwe Nkosi, Nothando Ngwenya, Janet Seeley, Anthony Akanlu, Paulina Tindana, Sassy Molyneux, Samson Kinyanjui, Dorcas Kamuya

Background: The COVID-19 pandemic forced governments, multilateral public health organisations and research institutions to undertake research quickly to inform their responses to the pandemic. Most COVID-19-related studies required swift approval, creating ethical and practical challenges for regulatory authorities and researchers. In this paper, we examine the landscape of ethics review processes in Africa during public health emergencies (PHEs).

Methods: We searched four electronic databases (Web of Science, PUBMED, MEDLINE Complete, and CINAHL) to identify articles describing ethics review processes during public health emergencies and/or pandemics. We selected and reviewed those articles that were focused on Africa. We charted the data from the retrieved articles including the authors and year of publication, title, country and disease(s) reference, broad areas of (ethical) consideration, paper type, and approach.

Results: Of an initial 4536 records retrieved, we screened the titles and abstracts of 1491 articles, and identified 72 articles for full review. Nine articles were selected for inclusion. Of these nine articles, five referenced West African countries including Liberia, Guinea and Sierra Leone, and experiences linked to the Ebola virus disease. Two articles focused on South Africa and Kenya, while the other two articles discussed more general experiences and pitfalls of ethics review during PHEs in Africa more broadly. We found no articles published on ethics review processes in Africa before the 2014 Ebola outbreak, and only a few before the COVID-19 outbreak. Although guidelines on protocol review and approval processes for PHEs were more frequently discussed after the 2014 Ebola outbreak, these did not focus on Africa specifically.

Conclusions: There is a gap in the literature about ethics review processes and preparedness within Africa during PHEs. This paper underscores the importance of these processes to inform practices that facilitate timely, context-relevant research that adequately recognises and reinforces human dignity within the quest to advance scientific knowledge about diseases. This is important to improve fast responses to PHEs, reduce mortality and morbidity, and enhance the quality of care before, during, and after pandemics.

背景:COVID-19 大流行迫使各国政府、多边公共卫生组织和研究机构迅速开展研究,为应对大流行提供依据。大多数与 COVID-19 相关的研究都需要迅速获得批准,这给监管机构和研究人员带来了伦理和实践方面的挑战。在本文中,我们研究了非洲公共卫生突发事件(PHE)期间的伦理审查程序:我们搜索了四个电子数据库(Web of Science、PUBMED、MEDLINE Complete 和 CINAHL),以确定描述公共卫生突发事件和/或流行病期间伦理审查程序的文章。我们选择并审查了那些关注非洲的文章。我们将检索到的文章数据制成图表,包括作者和发表年份、标题、涉及的国家和疾病、(伦理)考虑的广泛领域、论文类型和方法:在最初检索到的 4536 条记录中,我们筛选了 1491 篇文章的标题和摘要,确定了 72 篇文章进行全面审查。其中九篇文章被选中纳入研究。在这 9 篇文章中,有 5 篇提到了西非国家,包括利比里亚、几内亚和塞拉利昂,以及与埃博拉病毒疾病相关的经历。两篇文章关注南非和肯尼亚,另外两篇文章则更广泛地讨论了非洲公共卫生教育期间伦理审查的一般经验和隐患。我们发现,在 2014 年埃博拉疫情爆发之前,没有发表过关于非洲伦理审查流程的文章,在 COVID-19 疫情爆发之前也只有几篇文章。尽管在 2014 年埃博拉疫情爆发后,有关公共卫生教育的方案审查和批准流程指南的讨论更为频繁,但这些指南并未特别关注非洲:结论:关于非洲在公共卫生教育期间的伦理审查流程和准备工作的文献还存在空白。本文强调了这些程序的重要性,它们为促进及时开展与具体情况相关的研究的实践提供了信息,这些研究在寻求推进有关疾病的科学知识的过程中充分认识到并加强了人的尊严。这对于改善对公共卫生教育的快速反应、降低死亡率和发病率以及提高大流行病发生前、发生期间和发生后的护理质量非常重要。
{"title":"A scoping review of ethics review processes during public health emergencies in Africa.","authors":"Kingsley Orievulu, Alex Hinga, Busisiwe Nkosi, Nothando Ngwenya, Janet Seeley, Anthony Akanlu, Paulina Tindana, Sassy Molyneux, Samson Kinyanjui, Dorcas Kamuya","doi":"10.1186/s12910-024-01054-8","DOIUrl":"10.1186/s12910-024-01054-8","url":null,"abstract":"<p><strong>Background: </strong>The COVID-19 pandemic forced governments, multilateral public health organisations and research institutions to undertake research quickly to inform their responses to the pandemic. Most COVID-19-related studies required swift approval, creating ethical and practical challenges for regulatory authorities and researchers. In this paper, we examine the landscape of ethics review processes in Africa during public health emergencies (PHEs).</p><p><strong>Methods: </strong>We searched four electronic databases (Web of Science, PUBMED, MEDLINE Complete, and CINAHL) to identify articles describing ethics review processes during public health emergencies and/or pandemics. We selected and reviewed those articles that were focused on Africa. We charted the data from the retrieved articles including the authors and year of publication, title, country and disease(s) reference, broad areas of (ethical) consideration, paper type, and approach.</p><p><strong>Results: </strong>Of an initial 4536 records retrieved, we screened the titles and abstracts of 1491 articles, and identified 72 articles for full review. Nine articles were selected for inclusion. Of these nine articles, five referenced West African countries including Liberia, Guinea and Sierra Leone, and experiences linked to the Ebola virus disease. Two articles focused on South Africa and Kenya, while the other two articles discussed more general experiences and pitfalls of ethics review during PHEs in Africa more broadly. We found no articles published on ethics review processes in Africa before the 2014 Ebola outbreak, and only a few before the COVID-19 outbreak. Although guidelines on protocol review and approval processes for PHEs were more frequently discussed after the 2014 Ebola outbreak, these did not focus on Africa specifically.</p><p><strong>Conclusions: </strong>There is a gap in the literature about ethics review processes and preparedness within Africa during PHEs. This paper underscores the importance of these processes to inform practices that facilitate timely, context-relevant research that adequately recognises and reinforces human dignity within the quest to advance scientific knowledge about diseases. This is important to improve fast responses to PHEs, reduce mortality and morbidity, and enhance the quality of care before, during, and after pandemics.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"25 1","pages":"63"},"PeriodicalIF":3.0,"publicationDate":"2024-05-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11110293/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141082815","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 perspectives regarding Euthanasia, including in the context of adult psychiatry: a qualitative interview study among healthcare workers in Belgium. 关于安乐死的伦理观点,包括在成人精神病学中的伦理观点:对比利时医护人员的定性访谈研究。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-05-21 DOI: 10.1186/s12910-024-01063-7
Monica Verhofstadt, Loïc Moureau, Koen Pardon, Axel Liégeois

Introduction: Previous research has explored euthanasia's ethical dimensions, primarily focusing on general practice and, to a lesser extent, psychiatry, mainly from the viewpoints of physicians and nurses. However, a gap exists in understanding the comprehensive value-based perspectives of other professionals involved in both somatic and psychiatric euthanasia. This paper aims to analyze the interplay among legal, medical, and ethical factors to clarify how foundational values shape the ethical discourse surrounding euthanasia in both somatic and psychiatric contexts. It seeks to explore these dynamics among all healthcare professionals and volunteers in Belgium.

Methods: Semi-structured interviews were conducted with 30 Dutch-speaking healthcare workers who had encountered patients requesting euthanasia for psychiatric conditions, in Belgium, from August 2019 to August 2020. Qualitative thematic analysis was applied to the interview transcripts.

Findings: Participants identified three pivotal values and virtues: religious values, professional values, and fundamental medical values encompassing autonomy, beneficence, and non-maleficence, linked to compassion, quality care, and justice. These values interwove across four tiers: the patient, the patient's inner circle, the medical realm, and society at large. Irrespective of their euthanasia stance, participants generally displayed a blend of ethical values across these tiers. Their euthanasia perspective was primarily shaped by value interpretation, significance allocation to key components, and tier weighting. Explicit mention of varying ethical values, potentially indicating distinct stances in favor of or against euthanasia, was infrequent.

Conclusion: The study underscores ethical discourse's central role in navigating euthanasia's intricate landscape. Fostering inclusive dialogue, bridging diverse values, supports informed decision-making, nurturing justice, and empathy. Tailored end-of-life healthcare in psychiatry is essential, acknowledging all involved actors' needs. The study calls for interdisciplinary research to comprehensively grasp euthanasia's multifaceted dimensions, and guiding policy evolution. While contextualized in Belgium, the implications extend to the broader euthanasia discourse, suggesting avenues for further inquiry and cross-cultural exploration.

导言:以往的研究主要从医生和护士的角度探讨了安乐死的伦理问题,主要集中在全科医学领域,其次是精神病学领域。然而,在了解参与躯体安乐死和精神安乐死的其他专业人员的综合价值观点方面还存在差距。本文旨在分析法律、医学和伦理因素之间的相互作用,以阐明在躯体安乐死和精神安乐死的背景下,基础价值观是如何塑造围绕安乐死的伦理讨论的。本研究试图探讨比利时所有医护人员和志愿者之间的这些动态关系:方法:2019 年 8 月至 2020 年 8 月,在比利时对 30 名曾遇到过因精神疾病而请求安乐死的患者的荷兰语医护人员进行了半结构化访谈。对访谈记录进行了定性主题分析:参与者确定了三种关键价值观和美德:宗教价值观、专业价值观和基本医疗价值观,包括自主性、受益性和非恶意性,并与同情心、优质护理和正义相关联。这些价值观在四个层面相互交织:病人、病人的核心圈子、医疗领域和整个社会。无论其安乐死立场如何,参与者一般都会在这些层面上表现出伦理价值观的融合。他们的安乐死观点主要是由价值诠释、关键要素的重要性分配和层级权重决定的。很少有人明确提及不同的伦理价值观,这可能表明了支持或反对安乐死的不同立场:本研究强调了伦理讨论在驾驭安乐死复杂局面中的核心作用。促进包容性对话,在不同价值观之间架起桥梁,有助于做出明智的决策,培养正义感和同理心。精神病学中量身定制的临终关怀至关重要,要承认所有参与者的需求。本研究呼吁开展跨学科研究,以全面把握安乐死的多面性,并指导政策的演变。虽然研究以比利时为背景,但其意义却延伸到了更广泛的安乐死讨论中,为进一步的调查和跨文化探索提供了途径。
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引用次数: 0
Cardiac organoids do not warrant additional moral scrutiny. 心脏器官组织不需要额外的道德审查。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-05-21 DOI: 10.1186/s12910-024-01064-6
Jannieke N Simons, Rieke van der Graaf, Johannes Jm van Delden

Certain organoid subtypes are particularly sensitive. We explore whether moral intuitions about the heartbeat warrant unique moral consideration for newly advanced contracting cardiac organoids. Despite the heartbeat's moral significance in organ procurement and abortion discussions, we argue that this significance should not translate into moral implications for cardiac organoids.

某些类器官亚型尤其敏感。我们探讨了有关心跳的道德直觉是否需要对新近进入收缩期的心脏类器官进行独特的道德考量。尽管心跳在器官获取和堕胎讨论中具有重要的道德意义,但我们认为这种意义不应转化为对心脏类器官的道德影响。
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引用次数: 0
Urban people's preferences for life-sustaining treatment or artificial nutrition and hydration in advance decisions. 城市居民在预先决定中对维持生命的治疗或人工营养和水分补充的偏好。
IF 4.3 1区 哲学 Q1 ETHICS Pub Date : 2024-05-18 DOI: 10.1186/s12910-024-01060-w
Yi-Ling Wu, Tsai-Wen Lin, Chun-Yi Yang, Samuel Shih-Chih Wang, Sheng-Jean Huang

Background: The Patient Right to Autonomy Act (PRAA), implemented in Taiwan in 2019, enables the creation of advance decisions (AD) through advance care planning (ACP). This legal framework allows for the withholding and withdrawal of life-sustaining treatment (LST) or artificial nutrition and hydration (ANH) in situations like irreversible coma, vegetative state, severe dementia, or unbearable pain. This study aims to investigate preferences for LST or ANH across various clinical conditions, variations in participant preferences, and factors influencing these preferences among urban residents.

Methods: Employing a survey of legally structured AD documents and convenience sampling for data collection, individuals were enlisted from Taipei City Hospital, serving as the primary trial and demonstration facility for ACP in Taiwan since the commencement of the PRAA in its inaugural year. The study examined ADs and ACP consultation records, documenting gender, age, welfare entitlement, disease conditions, family caregiving experience, location of ACP consultation, participation of second-degree relatives, and the intention to participate in ACP.

Results: Data from 2337 participants were extracted from electronic records. There was high consistency in the willingness to refuse LST and ANH, with significant differences noted between terminal diseases and extremely severe dementia. Additionally, ANH was widely accepted as a time-limited treatment, and there was a prevalent trend of authorizing a health care agent (HCA) to make decisions on behalf of participants. Gender differences were observed, with females more inclined to decline LST and ANH, while males tended towards accepting full or time-limited treatment. Age also played a role, with younger participants more open to treatment and authorizing HCA, and older participants more prone to refusal.

Conclusion: Diverse preferences in LST and ANH were shaped by the public's current understanding of different clinical states, gender, age, and cultural factors. Our study reveals nuanced end-of-life preferences, evolving ADs, and socio-demographic influences. Further research could explore evolving preferences over time and healthcare professionals' perspectives on LST and ANH decisions for neurological patients..

背景:患者自主权法案》(PRAA)于 2019 年在台湾实施,该法案允许通过预先护理计划(ACP)做出预先决定(AD)。这一法律框架允许在不可逆转的昏迷、植物人状态、严重痴呆或无法忍受的疼痛等情况下,暂停或撤消维持生命的治疗(LST)或人工营养和水分补充(ANH)。本研究旨在调查城市居民在不同临床情况下对 LST 或 ANH 的偏好、参与者偏好的变化以及影响这些偏好的因素:方法:本研究采用法定结构化 AD 文件调查和便利抽样的方法收集数据,研究对象来自台北市立医院,该医院自 PRAA 开始实施的第一年起即成为台湾 ACP 的主要试验和示范机构。研究调查了ADs和ACP咨询记录,记录了性别、年龄、福利待遇、疾病状况、家庭照顾经验、ACP咨询地点、二级亲属参与情况以及参与ACP的意愿:从电子记录中提取了 2337 名参与者的数据。拒绝 LST 和 ANH 的意愿高度一致,但在绝症和极重度痴呆症之间存在显著差异。此外,ANH作为一种有时间限制的治疗方法已被广泛接受,而且授权医护代理(HCA)代表参与者做出决定的趋势也很普遍。我们观察到了性别差异,女性更倾向于拒绝 LST 和 ANH,而男性则倾向于接受全面或有时间限制的治疗。年龄也是一个因素,年轻的参与者更愿意接受治疗并授权 HCA,而年长的参与者则更容易拒绝:公众目前对不同临床状态、性别、年龄和文化因素的理解决定了他们对生命末期治疗和无创临终关怀的不同偏好。我们的研究揭示了细微的生命末期偏好、不断演变的 ADs 以及社会人口因素的影响。进一步的研究可以探讨随着时间推移而不断变化的偏好,以及医护人员对神经系统患者的生命末期治疗和无创临终关怀决策的看法。
{"title":"Urban people's preferences for life-sustaining treatment or artificial nutrition and hydration in advance decisions.","authors":"Yi-Ling Wu, Tsai-Wen Lin, Chun-Yi Yang, Samuel Shih-Chih Wang, Sheng-Jean Huang","doi":"10.1186/s12910-024-01060-w","DOIUrl":"10.1186/s12910-024-01060-w","url":null,"abstract":"<p><strong>Background: </strong>The Patient Right to Autonomy Act (PRAA), implemented in Taiwan in 2019, enables the creation of advance decisions (AD) through advance care planning (ACP). This legal framework allows for the withholding and withdrawal of life-sustaining treatment (LST) or artificial nutrition and hydration (ANH) in situations like irreversible coma, vegetative state, severe dementia, or unbearable pain. This study aims to investigate preferences for LST or ANH across various clinical conditions, variations in participant preferences, and factors influencing these preferences among urban residents.</p><p><strong>Methods: </strong>Employing a survey of legally structured AD documents and convenience sampling for data collection, individuals were enlisted from Taipei City Hospital, serving as the primary trial and demonstration facility for ACP in Taiwan since the commencement of the PRAA in its inaugural year. The study examined ADs and ACP consultation records, documenting gender, age, welfare entitlement, disease conditions, family caregiving experience, location of ACP consultation, participation of second-degree relatives, and the intention to participate in ACP.</p><p><strong>Results: </strong>Data from 2337 participants were extracted from electronic records. There was high consistency in the willingness to refuse LST and ANH, with significant differences noted between terminal diseases and extremely severe dementia. Additionally, ANH was widely accepted as a time-limited treatment, and there was a prevalent trend of authorizing a health care agent (HCA) to make decisions on behalf of participants. Gender differences were observed, with females more inclined to decline LST and ANH, while males tended towards accepting full or time-limited treatment. Age also played a role, with younger participants more open to treatment and authorizing HCA, and older participants more prone to refusal.</p><p><strong>Conclusion: </strong>Diverse preferences in LST and ANH were shaped by the public's current understanding of different clinical states, gender, age, and cultural factors. Our study reveals nuanced end-of-life preferences, evolving ADs, and socio-demographic influences. Further research could explore evolving preferences over time and healthcare professionals' perspectives on LST and ANH decisions for neurological patients..</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"25 1","pages":"59"},"PeriodicalIF":4.3,"publicationDate":"2024-05-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11102251/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140961058","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
How prehospital emergency personnel manage ethical challenges: the importance of confidence, trust, and safety. 院前急救人员如何应对伦理挑战:信心、信任和安全的重要性。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-05-18 DOI: 10.1186/s12910-024-01061-9
Henriette Bruun, Louise Milling, Daniel Wittrock, Søren Mikkelsen, Lotte Huniche

Background: Ethical challenges constitute an inseparable part of daily decision-making processes in all areas of healthcare. Ethical challenges are associated with moral distress that can lead to burnout. Clinical ethics support has proven useful to address and manage such challenges. This paper explores how prehospital emergency personnel manage ethical challenges. The study is part of a larger action research project to develop and test an approach to clinical ethics support that is sensitive to the context of emergency medicine.

Methods: We explored ethical challenges and management strategies in three focus groups, with 15 participants in total, each attended by emergency medical technicians, paramedics, and prehospital anaesthesiologists. Focus groups were audio-recorded and transcribed verbatim. The approach to data analysis was systematic text condensation approach.

Results: We stratified the management of ethical challenges into actions before, during, and after incidents. Before incidents, participants stressed the importance of mutual understandings, shared worldviews, and a supportive approach to managing emotions. During an incident, the participants employed moral perception, moral judgments, and moral actions. After an incident, the participants described sharing ethical challenges only to a limited extent as sharing was emotionally challenging, and not actively supported by workplace culture, or organisational procedures. The participants primarily managed ethical challenges informally, often using humour to cope.

Conclusion: Our analysis supports and clarifies that confidence, trust, and safety in relation to colleagues, management, and the wider organisation are essential for prehospital emergency personnel to share ethical challenges and preventing moral distress turning into burnout.

背景:伦理挑战是医疗保健各个领域日常决策过程中不可分割的一部分。伦理挑战与可能导致职业倦怠的道德困扰有关。临床伦理支持已被证明有助于应对和管理此类挑战。本文探讨了院前急救人员如何应对伦理挑战。该研究是一个更大的行动研究项目的一部分,该项目旨在开发和测试一种适合急救医学环境的临床伦理支持方法:我们在三个焦点小组中探讨了伦理挑战和管理策略,每个小组共有 15 人参加,分别由急救医疗技术人员、护理人员和院前麻醉师组成。对焦点小组进行了录音和逐字记录。数据分析方法为系统文本浓缩法:我们将伦理挑战的管理分为事前、事中和事后三个阶段。在事件发生前,参与者强调了相互理解、共同的世界观和支持性情绪管理方法的重要性。在事件发生期间,参与者运用了道德认知、道德判断和道德行动。在事件发生后,参与者仅在有限的程度上分享了道德挑战,因为分享在情绪上具有挑 战性,并且没有得到工作场所文化或组织程序的积极支持。参与者主要以非正式的方式应对道德挑战,通常使用幽默来应对:我们的分析支持并阐明了与同事、管理层和更广泛的组织相关的信心、信任和安全对于院前急救人员分享伦理挑战和防止道德困扰转化为职业倦怠至关重要。
{"title":"How prehospital emergency personnel manage ethical challenges: the importance of confidence, trust, and safety.","authors":"Henriette Bruun, Louise Milling, Daniel Wittrock, Søren Mikkelsen, Lotte Huniche","doi":"10.1186/s12910-024-01061-9","DOIUrl":"10.1186/s12910-024-01061-9","url":null,"abstract":"<p><strong>Background: </strong>Ethical challenges constitute an inseparable part of daily decision-making processes in all areas of healthcare. Ethical challenges are associated with moral distress that can lead to burnout. Clinical ethics support has proven useful to address and manage such challenges. This paper explores how prehospital emergency personnel manage ethical challenges. The study is part of a larger action research project to develop and test an approach to clinical ethics support that is sensitive to the context of emergency medicine.</p><p><strong>Methods: </strong>We explored ethical challenges and management strategies in three focus groups, with 15 participants in total, each attended by emergency medical technicians, paramedics, and prehospital anaesthesiologists. Focus groups were audio-recorded and transcribed verbatim. The approach to data analysis was systematic text condensation approach.</p><p><strong>Results: </strong>We stratified the management of ethical challenges into actions before, during, and after incidents. Before incidents, participants stressed the importance of mutual understandings, shared worldviews, and a supportive approach to managing emotions. During an incident, the participants employed moral perception, moral judgments, and moral actions. After an incident, the participants described sharing ethical challenges only to a limited extent as sharing was emotionally challenging, and not actively supported by workplace culture, or organisational procedures. The participants primarily managed ethical challenges informally, often using humour to cope.</p><p><strong>Conclusion: </strong>Our analysis supports and clarifies that confidence, trust, and safety in relation to colleagues, management, and the wider organisation are essential for prehospital emergency personnel to share ethical challenges and preventing moral distress turning into burnout.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"25 1","pages":"58"},"PeriodicalIF":3.0,"publicationDate":"2024-05-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11102201/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140961053","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 considerations and concerns in the implementation of AI in pharmacy practice: a cross-sectional study. 在药学实践中实施人工智能的伦理考虑和关切:一项横断面研究。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-05-16 DOI: 10.1186/s12910-024-01062-8
Hisham E Hasan, Deema Jaber, Omar F Khabour, Karem H Alzoubi

Background: Integrating artificial intelligence (AI) into healthcare has raised significant ethical concerns. In pharmacy practice, AI offers promising advances but also poses ethical challenges.

Methods: A cross-sectional study was conducted in countries from the Middle East and North Africa (MENA) region on 501 pharmacy professionals. A 12-item online questionnaire assessed ethical concerns related to the adoption of AI in pharmacy practice. Demographic factors associated with ethical concerns were analyzed via SPSS v.27 software using appropriate statistical tests.

Results: Participants expressed concerns about patient data privacy (58.9%), cybersecurity threats (58.9%), potential job displacement (62.9%), and lack of legal regulation (67.0%). Tech-savviness and basic AI understanding were correlated with higher concern scores (p < 0.001). Ethical implications include the need for informed consent, beneficence, justice, and transparency in the use of AI.

Conclusion: The findings emphasize the importance of ethical guidelines, education, and patient autonomy in adopting AI. Collaboration, data privacy, and equitable access are crucial to the responsible use of AI in pharmacy practice.

背景:将人工智能(AI)融入医疗保健领域引发了重大的伦理问题。在药学实践中,人工智能带来了充满希望的进步,但也带来了伦理挑战:在中东和北非(MENA)地区国家对 501 名药学专业人员进行了横向研究。一份包含 12 个项目的在线调查问卷评估了与在药学实践中采用人工智能相关的伦理问题。通过 SPSS v.27 软件使用适当的统计检验分析了与伦理问题相关的人口统计因素:结果:参与者表达了对患者数据隐私(58.9%)、网络安全威胁(58.9%)、潜在失业(62.9%)和缺乏法律监管(67.0%)的担忧。对技术的精通程度和对人工智能的基本了解与较高的担忧得分相关(p 结论:对技术的精通程度和对人工智能的基本了解与较高的担忧得分相关:研究结果强调了伦理准则、教育和患者自主权在采用人工智能方面的重要性。合作、数据隐私和公平访问对于在药学实践中负责任地使用人工智能至关重要。
{"title":"Ethical considerations and concerns in the implementation of AI in pharmacy practice: a cross-sectional study.","authors":"Hisham E Hasan, Deema Jaber, Omar F Khabour, Karem H Alzoubi","doi":"10.1186/s12910-024-01062-8","DOIUrl":"10.1186/s12910-024-01062-8","url":null,"abstract":"<p><strong>Background: </strong>Integrating artificial intelligence (AI) into healthcare has raised significant ethical concerns. In pharmacy practice, AI offers promising advances but also poses ethical challenges.</p><p><strong>Methods: </strong>A cross-sectional study was conducted in countries from the Middle East and North Africa (MENA) region on 501 pharmacy professionals. A 12-item online questionnaire assessed ethical concerns related to the adoption of AI in pharmacy practice. Demographic factors associated with ethical concerns were analyzed via SPSS v.27 software using appropriate statistical tests.</p><p><strong>Results: </strong>Participants expressed concerns about patient data privacy (58.9%), cybersecurity threats (58.9%), potential job displacement (62.9%), and lack of legal regulation (67.0%). Tech-savviness and basic AI understanding were correlated with higher concern scores (p < 0.001). Ethical implications include the need for informed consent, beneficence, justice, and transparency in the use of AI.</p><p><strong>Conclusion: </strong>The findings emphasize the importance of ethical guidelines, education, and patient autonomy in adopting AI. Collaboration, data privacy, and equitable access are crucial to the responsible use of AI in pharmacy practice.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"25 1","pages":"55"},"PeriodicalIF":3.0,"publicationDate":"2024-05-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11096093/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140946614","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
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