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Refusal of patients: care for people without health insurance in German emergency departments. 拒绝病人:德国急诊科对无医疗保险者的护理。
IF 4.3 1区 哲学 Q1 ETHICS Pub Date : 2024-05-16 DOI: 10.1186/s12910-024-01059-3
Matthias Zimmer

In case of an emergency, health insurance in Germany provides easy access to medical care in emergency departments. Over 100,000 people do not have health insurance for various reasons. They are repeatedly refused treatment in emergency rooms as their right to care outside of regular insurance is often unknown or ignored.

在德国,一旦出现紧急情况,医疗保险可提供在急诊室就医的便利。超过 10 万人由于各种原因没有医疗保险。他们在急诊室屡屡被拒绝治疗,因为他们在正常保险之外的医疗权利往往不为人所知或被忽视。
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引用次数: 0
Exploring the consent process among pregnant and breastfeeding women taking part in a maternal vaccine clinical trial in Kampala, Uganda: a qualitative study. 探索乌干达坎帕拉参加孕产妇疫苗临床试验的孕妇和哺乳期妇女的同意过程:一项定性研究。
IF 4.3 1区 哲学 Q1 ETHICS Pub Date : 2024-05-16 DOI: 10.1186/s12910-024-01055-7
Agnes Ssali, Rita Namugumya, Phiona Nalubega, Mary Kyohere, Janet Seeley, Kirsty Le Doare

Background: The involvement of pregnant women in vaccine clinical trials presents unique challenges for the informed consent process. We explored the expectations and experiences of the pregnant women, spouses/partners, health workers and stakeholders of the consent process during a Group B Streptococcus maternal vaccine trial.

Methods: We interviewed 56 participants including pregnant women taking part in the trial, women not in the trial, health workers handling the trial procedures, spouses, and community stakeholders. We conducted 13 in-depth interviews and focus group discussions with 23 women in the trial, in-depth interviews with 5 spouses, and 5 women not in the trial, key informant interviews with 5 health workers and 5 other stakeholders were undertaken.

Results: Decision-making by a pregnant woman to join a trial was done in consultation with spouse, parents, siblings, or trusted health workers. Written study information was appreciated by all but they suggested the use of audio and visual presentation to enhance understanding. Women stressed the need to ensure that their male partners received study information before their pregnant partners joined a clinical trial. Confidentiality in research was emphasised differently by individual participants; while some emphasised it for self, others were keen to protect their family members from being exposed, for allowing them to be involved in research. However, others wanted their community participation to be acknowledged.

Conclusion: We found that pregnant women make decisions to join a clinical trial after consulting with close family. Our findings suggest the need for an information strategy which informs not only the pregnant woman, but also her family about the research she is invited to engage in.

背景:孕妇参与疫苗临床试验给知情同意程序带来了独特的挑战。我们探讨了孕妇、配偶/伴侣、医务工作者和利益相关者在 B 群链球菌母体疫苗试验中对同意程序的期望和经验:我们采访了 56 名参与者,包括参加试验的孕妇、未参加试验的妇女、处理试验程序的医务工作者、配偶和社区利益相关者。我们对 23 名参加试验的妇女进行了 13 次深入访谈和焦点小组讨论,对 5 名配偶和 5 名未参加试验的妇女进行了深入访谈,对 5 名卫生工作者和 5 名其他利益相关者进行了关键信息访谈:结果:孕妇在决定是否参加试验时都会征求配偶、父母、兄弟姐妹或可信赖的医务工作者的意见。所有人都对书面研究信息表示赞赏,但她们建议使用音频和视频演示来加深理解。妇女强调有必要确保她们的男性伴侣在其怀孕伴侣参加临床试验之前收到研究信息。个别参与者对研究保密性的强调各不相同;有些人强调为自己保密,有些人则热衷于保护其家人不被曝光,因为允许他们参与研究。然而,其他人则希望她们的社区参与能够得到认可:我们发现,孕妇在决定是否参加临床试验之前,会征求近亲的意见。我们的研究结果表明,有必要制定一项信息策略,不仅要让孕妇知情,还要让其家人了解她受邀参与的研究。
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引用次数: 0
Correction: Ethical use of artificial intelligence to prevent sudden cardiac death: an interview study of patient perspectives. 更正:使用人工智能预防心脏性猝死的伦理问题:对患者观点的访谈研究。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-05-14 DOI: 10.1186/s12910-024-01047-7
Menno T Maris, Ayca Koçar, Dick L Willems, Jeannette Pols, Hanno L Tan, Georg L Lindinger, Marieke A R Bak
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引用次数: 0
Who to engage in HIV vaccine trial benefit-sharing negotiations? An empirical proposition of a framework. 谁来参与艾滋病疫苗试验利益分享谈判?一个框架的经验性建议。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-05-14 DOI: 10.1186/s12910-024-01058-4
Godwin Pancras, Mangi Ezekiel, Erasto Mbugi, Jon F Merz

Background: A morally sound framework for benefit-sharing is crucial to minimize research exploitation for research conducted in developing countries. However, in practice, it remains uncertain which stakeholders should be involved in the decision-making process regarding benefit-sharing and what the implications might be. Therefore the study aimed to empirically propose a framework for benefit-sharing negotiations in research by taking HIV vaccine trials as a case.

Methods: The study was conducted in Tanzania using a case study design and qualitative approaches. Data were collected using in-depth interviews (IDI) and focus group discussions (FGD). A total of 37 study participants were selected purposively comprising institutional review board (IRB) members, researchers, community advisory board (CAB) members, a policymaker, and HIV/AIDS advocates. Deductive and inductive thematic analysis approaches were deployed to analyze collected data with the aid of MAXQDA version 20.4.0 software.

Results: The findings indicate a triangular relationship between the research community, researched community and intermediaries. However, the relationship ought to take into consideration the timing of negotiations, the level of understanding between parties and the phase of the clinical trial. The proposed framework operationalize partnership interactions in community-based participatory research.

Conclusion: In the context of this study, the suggested framework incorporates the research community, the community being researched, and intermediary parties. The framework would guarantee well-informed and inclusive decision-making regarding benefit-sharing in HIV vaccine trials and other health-related research conducted in resource-limited settings.

背景:一个道德上合理的利益共享框架对于最大限度地减少发展中国家的研究开发至关重要。然而,在实践中,哪些利益相关者应参与利益分享的决策过程以及可能产生的影响仍不确定。因此,本研究旨在以艾滋病疫苗试验为例,根据经验提出研究中利益分享谈判的框架:研究在坦桑尼亚进行,采用案例研究设计和定性方法。通过深入访谈(IDI)和焦点小组讨论(FGD)收集数据。有目的性地挑选了 37 名研究参与者,其中包括机构审查委员会(IRB)成员、研究人员、社区咨询委员会(CAB)成员、一名政策制定者和艾滋病毒/艾滋病倡导者。在 MAXQDA 20.4.0 版软件的帮助下,采用演绎和归纳专题分析方法对收集到的数据进行了分析:研究结果表明,研究团体、被研究团体和中介机构之间存在三角关系。然而,这种关系应考虑到谈判的时机、各方之间的理解程度以及临床试验的阶段。所提出的框架使基于社区的参与式研究中的伙伴关系互动具有可操作性:在本研究中,建议的框架包含了研究社区、被研究社区和中介各方。该框架将确保在资源有限的环境中进行的艾滋病疫苗试验和其他与健康相关的研究中,在充分知情的情况下就利益分享问题做出包容性决策。
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引用次数: 0
Navigating the ethical landscape of artificial intelligence in radiography: a cross-sectional study of radiographers' perspectives. 人工智能在放射学中的伦理导航:对放射技师观点的横断面研究。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-05-11 DOI: 10.1186/s12910-024-01052-w
Faten Mane Aldhafeeri

Background: The integration of artificial intelligence (AI) in radiography presents transformative opportunities for diagnostic imaging and introduces complex ethical considerations. The aim of this cross-sectional study was to explore radiographers' perspectives on the ethical implications of AI in their field and identify key concerns and potential strategies for addressing them.

Methods: A structured questionnaire was distributed to a diverse group of radiographers in Saudi Arabia. The questionnaire included items on ethical concerns related to AI, the perceived impact on clinical practice, and suggestions for ethical AI integration in radiography. The data were analyzed using quantitative and qualitative methods to capture a broad range of perspectives.

Results: Three hundred eighty-eight radiographers responded and had varying levels of experience and specializations. Most (44.8%) participants were unfamiliar with the integration of AI into radiography. Approximately 32.9% of radiographers expressed uncertainty regarding the importance of transparency and explanatory capabilities in the AI systems used in radiology. Many (36.9%) participants indicated that they believed that AI systems used in radiology should be transparent and provide justifications for their decision-making procedures. A significant preponderance (44%) of respondents agreed that implementing AI in radiology may increase ethical dilemmas. However, 27.8%expressed uncertainty in recognizing and understanding the potential ethical issues that could arise from integrating AI in radiology. Of the respondents, 41.5% stated that the use of AI in radiology required establishing specific ethical guidelines. However, a significant percentage (28.9%) expressed the opposite opinion, arguing that utilizing AI in radiology does not require adherence to ethical standards. In contrast to the 46.6% of respondents voicing concerns about patient privacy over AI implementation, 41.5% of respondents did not have any such apprehensions.

Conclusions: This study revealed a complex ethical landscape in the integration of AI in radiography, characterized by enthusiasm and apprehension among professionals. It underscores the necessity for ethical frameworks, education, and policy development to guide the implementation of AI in radiography. These findings contribute to the ongoing discourse on AI in medical imaging and provide insights that can inform policymakers, educators, and practitioners in navigating the ethical challenges of AI adoption in healthcare.

背景:人工智能(AI)与放射学的结合为影像诊断带来了变革性机遇,同时也带来了复杂的伦理问题。本横断面研究旨在探讨放射技师对人工智能在其领域中的伦理影响的看法,并确定关键问题和解决这些问题的潜在策略:向沙特阿拉伯的各类放射技师发放了一份结构化问卷。问卷包括与人工智能相关的伦理问题、对临床实践的影响以及将人工智能融入放射学的伦理建议等项目。采用定量和定性方法对数据进行了分析,以捕捉广泛的视角:共有 388 名放射技师做出了回应,他们的经验和专业水平各不相同。大多数参与者(44.8%)不熟悉将人工智能融入放射学。约 32.9% 的放射技师对放射学中使用的人工智能系统的透明度和解释能力的重要性表示不确定。许多参与者(36.9%)表示,他们认为放射学中使用的人工智能系统应该是透明的,并为其决策程序提供理由。绝大多数受访者(44%)同意,在放射学中使用人工智能可能会增加伦理困境。然而,27.8%的受访者表示无法确定是否认识和理解将人工智能应用于放射学可能产生的潜在伦理问题。41.5%的受访者表示,在放射学中使用人工智能需要制定具体的伦理准则。不过,也有相当大比例的受访者(28.9%)表达了相反的观点,认为在放射学中使用人工智能不需要遵守伦理标准。46.6%的受访者表示担心人工智能的实施会影响患者隐私,与此形成鲜明对比的是,41.5%的受访者没有任何此类担忧:这项研究揭示了人工智能与放射学结合过程中复杂的伦理状况,专业人员对此既充满热情,又心存忧虑。它强调了伦理框架、教育和政策制定的必要性,以指导人工智能在放射学中的应用。这些研究结果为目前有关医学影像领域人工智能的讨论做出了贡献,并为政策制定者、教育工作者和从业人员在应对医疗保健领域采用人工智能所带来的伦理挑战时提供了启示。
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引用次数: 0
A qualitative interview study to determine barriers and facilitators of implementing automated decision support tools for genomic data access 一项定性访谈研究,旨在确定实施基因组数据访问自动决策支持工具的障碍和促进因素
IF 2.7 1区 哲学 Q1 ETHICS Pub Date : 2024-05-05 DOI: 10.1186/s12910-024-01050-y
Vasiliki Rahimzadeh, Jinyoung Baek, Jonathan Lawson, Edward S. Dove
Data access committees (DAC) gatekeep access to secured genomic and related health datasets yet are challenged to keep pace with the rising volume and complexity of data generation. Automated decision support (ADS) systems have been shown to support consistency, compliance, and coordination of data access review decisions. However, we lack understanding of how DAC members perceive the value add of ADS, if any, on the quality and effectiveness of their reviews. In this qualitative study, we report findings from 13 semi-structured interviews with DAC members from around the world to identify relevant barriers and facilitators to implementing ADS for genomic data access management. Participants generally supported pilot studies that test ADS performance, for example in cataloging data types, verifying user credentials and tagging datasets for use terms. Concerns related to over-automation, lack of human oversight, low prioritization, and misalignment with institutional missions tempered enthusiasm for ADS among the DAC members we engaged. Tensions for change in institutional settings within which DACs operated was a powerful motivator for why DAC members considered the implementation of ADS into their access workflows, as well as perceptions of the relative advantage of ADS over the status quo. Future research is needed to build the evidence base around the comparative effectiveness and decisional outcomes of institutions that do/not use ADS into their workflows.
数据访问委员会(DAC)负责对安全的基因组和相关健康数据集的访问进行把关,但却面临着跟不上数据生成量和复杂性不断增加的挑战。自动决策支持 (ADS) 系统已被证明可支持数据访问审查决策的一致性、合规性和协调性。然而,我们对 DAC 成员如何看待 ADS 对其审查质量和效率的增值作用还缺乏了解。在这项定性研究中,我们报告了对来自世界各地的 DAC 成员进行的 13 次半结构式访谈的结果,以确定在基因组数据访问管理中实施 ADS 的相关障碍和促进因素。参与者普遍支持测试 ADS 性能的试点研究,例如在编目数据类型、验证用户凭证和标记数据集使用术语方面。我们接触的 DAC 成员对过度自动化、缺乏人工监督、优先级低以及与机构使命不符等问题表示担忧,这些问题削弱了他们对 ADS 的热情。DAC成员之所以考虑在他们的访问工作流程中实施ADS,DAC运作的机构环境中对变革的紧张是一个强大的推动因素,同时也是对ADS相对于现状的优势的看法。未来的研究需要围绕在工作流程中使用或不使用 ADS 的机构的比较效果和决策结果建立证据基础。
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引用次数: 0
Ethics support for ethics support: the development of the Confidentiality Compass for dealing with moral challenges concerning (breaching) confidentiality in moral case deliberation 为道德支持提供道德支持:开发保密指南针,以应对道德案件审议中有关(违反)保密的道德挑战
IF 2.7 1区 哲学 Q1 ETHICS Pub Date : 2024-05-03 DOI: 10.1186/s12910-024-01039-7
Wieke Ligtenberg, Margreet Stolper, Bert Molewijk
Confidentiality is one of the central preconditions for clinical ethics support (CES). CES cases which generate moral questions for CES staff concerning (breaching) confidentiality of what has been discussed during CES can cause moral challenges. Currently, there seems to be no clear policy or guidance regarding how CES staff can or should deal with these moral challenges related to (not) breaching confidentiality within CES. Moral case deliberation is a specific kind of CES. Based on experiences and research into MCD facilitators’ needs for ethics support in this regard, we jointly developed an ethics support tool for MCD facilitators: the Confidentiality Compass. This paper describes the iterative developmental process, including our theoretical viewpoints and reflections on characteristics of CES tools in general. The content and goals of the ethics support tool, which contains four elements, is described. Part A is about providing information on the concept of confidentiality in MCD, part B is a moral compass with reflective questions, part C focuses on courses of action for careful handling of moral challenges related to confidentiality. Part D contains general lessons, best practices and tips for dealing with confidentiality in future cases. This paper concludes with providing some lessons-learned related to developing ethics support tools and some reflections on issues of quality and normativity of ethics support tools.
保密是临床伦理支持(CES)的核心先决条件之一。如果 CES 案例对 CES 工作人员提出有关(违反)CES 讨论内容保密性的道德问题,就会造成道德挑战。目前,似乎还没有明确的政策或指导,说明 CES 工作人员可以或应该如何处理这些与 CES 中(不)违反保密性有关的道德挑战。道德案例审议是一种特殊的 CES。根据我们的经验和对道德案例讨论主持人在这方面的道德支持需求的研究,我们共同为道德案例讨论主持人开发了一个道德支持工具:"保密指南针"。本文介绍了迭代开发过程,包括我们的理论观点和对一般 CES 工具特点的思考。道德支持工具包含四个部分,本文介绍了该工具的内容和目标。A 部分是关于提供医学合作中保密概念的信息,B 部分是带有反思问题的道德指南针,C 部分侧重于谨慎处理与保密有关的道德挑战的行动方案。D 部分包含在未来案件中处理保密问题的一般经验教训、最佳做法和提示。本文最后提供了与开发道德规范支持工具有关的一些经验教训,以及对道德规范支持工具的质量和规范性问题的一些思考。
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引用次数: 0
Facing a request for assisted death - views of Finnish physicians, a mixed method study 面对协助死亡的请求--芬兰医生的观点,一项混合方法研究
IF 2.7 1区 哲学 Q1 ETHICS Pub Date : 2024-05-03 DOI: 10.1186/s12910-024-01051-x
Reetta P. Piili, Minna Hökkä, Jukka Vänskä, Elina Tolvanen, Pekka Louhiala, Juho T. Lehto
Assisted death, including euthanasia and physician-assisted suicide (PAS), is under debate worldwide, and these practices are adopted in many Western countries. Physicians’ attitudes toward assisted death vary across the globe, but little is known about physicians’ actual reactions when facing a request for assisted death. There is a clear gap in evidence on how physicians act and respond to patients’ requests for assisted death in countries where these actions are not legal. A survey including statements concerning euthanasia and PAS and an open question about their actions when facing a request for assisted death was sent to all Finnish physicians. Quantitative data are presented as numbers and percentages. Statistical significance was tested by using the Pearson chi-square test, when appropriate. The qualitative analysis was performed by using an inductive content analysis approach, where categories emerge from the data. Altogether, 6889 physicians or medical students answered the survey, yielding a response rate of 26%. One-third of participants agreed or partly agreed that they could assist a patient in a suicide. The majority (69%) of the participants fully or partly agreed that euthanasia should only be accepted due to difficult physical symptoms, while 12% fully or partly agreed that life turning into a burden should be an acceptable reason for euthanasia. Of the participants, 16% had faced a request for euthanasia or PAS, and 3033 answers from 2565 respondents were achieved to the open questions concerning their actions regarding the request and ethical aspects of assisted death. In the qualitative analysis, six main categories, including 22 subcategories, were formed regarding the phenomenon of how physicians act when facing this request. The six main categories were as follows: providing an alternative to the request, enabling care and support, ignoring the request, giving a reasoned refusal, complying with the request, and seeing the request as a possibility. Finnish physicians’ actions regarding the requests for assisted death, and attitudes toward euthanasia and PAS vary substantially. Open discussion, education, and recommendations concerning a request for assisted death and ethics around it are also highly needed in countries where euthanasia and PAS are not legal.
协助死亡,包括安乐死和医生协助自杀(PAS),正在全球范围内引起争论,许多西方国家都采用了这些做法。全球各地医生对辅助死亡的态度各不相同,但对医生在面对辅助死亡请求时的实际反应却知之甚少。在辅助死亡行为不合法的国家,医生如何采取行动和应对患者的辅助死亡请求,这方面的证据明显不足。我们向所有芬兰医生发送了一份调查问卷,其中包括关于安乐死和辅助死亡的声明,以及一个关于医生在面对辅助死亡请求时的行为的开放性问题。定量数据以数字和百分比表示。适当时使用皮尔逊卡方检验法检验统计意义。定性分析采用归纳式内容分析法,即从数据中归纳出类别。共有 6889 名医生或医科学生回答了调查,回复率为 26%。三分之一的参与者同意或部分同意他们可以帮助病人自杀。大多数参与者(69%)完全同意或部分同意,安乐死只应在患者出现难以忍受的身体症状时才被接受,12%的参与者完全同意或部分同意,生命变成负担应该是安乐死的一个可接受的理由。在参与者中,16% 的人曾面临过安乐死或临逝者安乐死的请求,2565 名受访者回答了 3033 个开放性问题,这些问题涉及他们对协助死亡的请求和伦理方面所采取的行动。在定性分析中,针对医生在面对这一请求时如何行动这一现象,形成了六个主要类别,包括 22 个子类别。这六大类分别是:为请求提供替代方案、提供护理和支持、无视请求、给予合理的拒绝、遵守请求以及将请求视为一种可能性。芬兰医生对协助死亡请求所采取的行动以及对安乐死和PAS的态度大相径庭。在安乐死和临终关怀不合法的国家,也非常需要就辅助死亡请求和相关伦理问题进行公开讨论、开展教育和提出建议。
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引用次数: 0
A comparative ethical analysis of the Egyptian clinical research law 埃及临床研究法的伦理比较分析
IF 2.7 1区 哲学 Q1 ETHICS Pub Date : 2024-04-30 DOI: 10.1186/s12910-024-01040-0
Sylvia Martin, Mirko Ancillotti, Santa Slokenberga, Amal Matar
In this study, we examined the ethical implications of Egypt’s new clinical trial law, employing the ethical framework proposed by Emanuel et al. and comparing it to various national and supranational laws. This analysis is crucial as Egypt, considered a high-growth pharmaceutical market, has become an attractive location for clinical trials, offering insights into the ethical implementation of bioethical regulations in a large population country with a robust healthcare infrastructure and predominantly treatment-naïve patients. We conducted a comparative analysis of Egyptian law with regulations from Sweden and France, including the EU Clinical Trials Regulation, considering ethical human subject research criteria, and used a directed approach to qualitative content analysis to examine the laws and regulations. This study involved extensive peer scrutiny, frequent debriefing sessions, and collaboration with legal experts with relevant international legal expertise to ensure rigorous analysis and interpretation of the laws. On the rating of the seven different principles (social and scientific values, scientific validity, fair selection of participants, risk-benefit ratio, independent review, informed consent and respect for participants) Egypt, France, and EU regulations had comparable scores. Specific principles (Social Value, Scientific Value, and Fair selection of participants) were challenging to directly identify due to certain regulations embodying 'implicit' principles more than explicitly stated ones. The analysis underscores Egypt's alignment with internationally recognized ethical principles, as outlined by Emanuel et al., through its comparison with French, Swedish, and EU regulations, emphasizing the critical need for Egypt to continuously refine its ethical regulations to safeguard participant protection and research integrity. Key issues identified include the necessity to clarify and standardize the concept of social value in research, alongside concerns regarding the expertise and impartiality of ethical review boards, pointing towards a broader agenda for enhancing research ethics in Egypt and beyond.
在本研究中,我们采用伊曼纽尔等人提出的伦理框架,并将其与各种国家和超国家法律进行比较,研究了埃及新临床试验法的伦理影响。这一分析至关重要,因为埃及被认为是一个高增长的医药市场,已成为一个具有吸引力的临床试验地点,为在一个人口众多、医疗基础设施健全、以治疗无效患者为主的国家实施生物伦理法规提供了启示。我们将埃及的法律与瑞典和法国的法规(包括欧盟临床试验法规)进行了比较分析,考虑到了人类受试者研究的伦理标准,并采用了定性内容分析的定向方法来研究法律法规。这项研究涉及广泛的同行审查、频繁的汇报会以及与具有相关国际法律专业知识的法律专家的合作,以确保对法律进行严格的分析和解释。在七项不同原则(社会和科学价值、科学有效性、公平选择参与者、风险收益比、独立审查、知情同意和尊重参与者)的评分方面,埃及、法国和欧盟的法规得分相当。具体原则(社会价值、科学价值和公平选择参与者)很难直接确定,因为某些法规更多体现的是 "隐含 "原则,而不是明文规定的原则。这项分析通过与法国、瑞典和欧盟的法规进行比较,强调了埃及与伊曼纽尔等人概述的国际公认伦理原则的一致性,同时强调埃及亟需不断完善其伦理法规,以保障参与者的保护和研究的完整性。所发现的关键问题包括有必要澄清研究中的社会价值概念并使之标准化,以及对伦理审查委员会的专业知识和公正性的担忧,这些都为加强埃及及其他国家的研究伦理提出了更广泛的议程。
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引用次数: 0
“I am in favour of organ donation, but I feel you should opt-in”—qualitative analysis of the #options 2020 survey free-text responses from NHS staff toward opt-out organ donation legislation in England "我赞成器官捐献,但我认为您应该选择加入"--对英国国家医疗服务系统(NHS)工作人员对选择退出器官捐献立法的 #options 2020 调查自由文本回复的定性分析
IF 2.7 1区 哲学 Q1 ETHICS Pub Date : 2024-04-20 DOI: 10.1186/s12910-024-01048-6
Natalie L. Clark, Dorothy Coe, Natasha Newell, Mark N. A. Jones, Matthew Robb, David Reaich, Caroline Wroe
In May 2020, England moved to an opt-out organ donation system, meaning adults are presumed to be an organ donor unless within an excluded group or have opted-out. This change aims to improve organ donation rates following brain or circulatory death. Healthcare staff in the UK are supportive of organ donation, however, both healthcare staff and the public have raised concerns and ethical issues regarding the change. The #options survey was completed by NHS organisations with the aim of understanding awareness and support of the change. This paper analyses the free-text responses from the survey. The #options survey was registered as a National Institute of Health Research (NIHR) portfolio trial [IRAS 275992] 14 February 2020, and was completed between July and December 2020 across NHS organisations in the North-East and North Cumbria, and North Thames. The survey contained 16 questions of which three were free-text, covering reasons against, additional information required and family discussions. The responses to these questions were thematically analysed. The #options survey received 5789 responses from NHS staff with 1404 individuals leaving 1657 free-text responses for analysis. The family discussion question elicited the largest number of responses (66%), followed by those against the legislation (19%), and those requiring more information (15%). Analysis revealed six main themes with 22 sub-themes. The overall #options survey indicated NHS staff are supportive of the legislative change. Analysis of the free-text responses indicates that the views of the NHS staff who are against the change reflect the reasons, misconceptions, and misunderstandings of the public. Additional concerns included the rationale for the change, informed decision making, easy access to information and information regarding organ donation processes. Educational materials and interventions need to be developed for NHS staff to address the concepts of autonomy and consent, organ donation processes, and promote family conversations. Wider public awareness campaigns should continue to promote the positives and refute the negatives thus reducing misconceptions and misunderstandings. National Institute of Health Research (NIHR) [IRAS 275992].
2020 年 5 月,英格兰转而采用选择退出器官捐献系统,这意味着成年人被推定为器官捐献者,除非属于被排除在外的群体或选择退出。这一变化旨在提高脑死亡或循环系统死亡后的器官捐献率。英国医护人员支持器官捐献,但医护人员和公众都对这一变化提出了担忧和伦理问题。英国国家医疗服务系统(NHS)组织完成了 #options 调查,旨在了解人们对这一改变的认识和支持。本文分析了调查中的自由文本回复。#options 调查于 2020 年 2 月 14 日注册为国家健康研究院(NIHR)组合试验 [IRAS 275992],并于 2020 年 7 月至 12 月期间在东北部、北坎布里亚和北泰晤士地区的 NHS 机构完成。调查包含 16 个问题,其中 3 个问题为自由文本,涉及反对理由、所需补充信息和家庭讨论。对这些问题的回答进行了专题分析。选择调查共收到 5789 份来自 NHS 工作人员的回复,其中有 1404 人留下了 1657 份自由文本回复供分析。家庭讨论问题得到的回复最多(66%),其次是反对立法的回复(19%)和需要更多信息的回复(15%)。分析显示了六个主要主题和 22 个次主题。整体 #选项调查表明,NHS 员工支持立法改革。对自由文本回复的分析表明,反对修改的 NHS 员工的观点反映了原因、误解和公众的误解。其他关注的问题包括修改的理由、知情决策、获取信息的便利性以及有关器官捐献程序的信息。需要为国家医疗服务系统的工作人员编制教育材料和干预措施,以解决自主权和同意的概念、器官捐献程序以及促进家庭对话。应继续开展更广泛的提高公众认识运动,宣传积极因素,驳斥消极因素,从而减少误解和误会。国家卫生研究院(NIHR)[IRAS 275992]。
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BMC Medical Ethics
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