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The Current State and Challenges of Clinical Ethics Consultation for Prenatal Diagnosis: A Qualitative Study of Committee Employee Perspectives in China 产前诊断临床伦理咨询的现状与挑战:基于中国委员会员工视角的定性研究。
IF 1.3 Q3 ETHICS Pub Date : 2024-09-05 DOI: 10.1007/s41649-024-00303-7
Ying Wu, Tianchi Hao, Xing Liu, Xin Zhang, Yuqiong Zhong, Dan Luo, Xiaomin Wang

Clinical ethics consultations (CECs) play an important role in resolving ethical issues in clinical practice worldwide. The government has encouraged the development of CECs in China to address the ethical challenges arising in prenatal diagnosis. So far, the current state and challenges facing CEC remain understudied. This study aimed to explore the perspectives of employees on ethics committees for prenatal diagnosis in 13 medical institutions in Hunan Province, China. Twenty-eight employees participated in interviews. Our qualitative approach employed content analysis to identify major themes in interviewees’ responses, which covered the composition and vision of their prenatal diagnosis ethics committee, as well as the challenges they faced. The results show that CEC in China is in an exploratory stage, with models for CEC composition, and workflow varying significantly. Therefore, we propose the future direction of efforts to improve CECs, including improving CEC working mechanisms and operating procedures, strengthening ethical training for healthcare workers and ethics committee employees, and developing more specific ethical guidance based on the accumulated experiences of ethics committee employees in the early development of CEC for prenatal diagnosis.

临床伦理咨询(CECs)在解决全球临床实践中的伦理问题方面发挥着重要作用。中国政府鼓励CECs的发展,以解决产前诊断中出现的伦理挑战。到目前为止,CEC面临的现状和挑战仍未得到充分研究。本研究旨在探讨湖南省13家医疗机构员工对产前诊断伦理委员会的看法。28名员工参加了采访。我们的定性方法采用内容分析来确定受访者回答的主要主题,其中涵盖了产前诊断伦理委员会的组成和愿景,以及他们面临的挑战。结果表明,中国的CEC还处于探索阶段,CEC组成模型和工作流程存在较大差异。因此,我们提出未来完善CEC的工作方向,包括完善CEC的工作机制和操作程序,加强对医护人员和伦理委员会员工的伦理培训,并根据伦理委员会员工在产前诊断CEC早期发展过程中积累的经验,制定更具体的伦理指导。
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引用次数: 0
Opening Access to the Bioethics Spectrum 打开生物伦理学的大门
IF 1.3 Q3 ETHICS Pub Date : 2024-09-02 DOI: 10.1007/s41649-024-00320-6
Graeme T. Laurie
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引用次数: 0
An Ethical Analysis of the Online Content of Assisted Reproductive Technology Centers in Bangladesh 对孟加拉国辅助生殖技术中心在线内容的伦理分析
IF 1.3 Q3 ETHICS Pub Date : 2024-08-28 DOI: 10.1007/s41649-024-00316-2
Md Shaikh Farid

Assisted reproductive technologies (ARTs) have become a widely utilized medical technology for treating infertility worldwide. However, societies and countries have applied these technologies in accordance with their cultural practices and belief systems. This paper presents an overview of ART providers in Bangladesh and analyzes their online content in addressing potential infertile couples. Examining the topic within the context of socio-economic and public health challenges in Bangladesh, particularly overpopulation, poverty, and lack of education, the research conducted a web content analysis of ART providers in Bangladesh from July 1 to September 1, 2023. Twenty active ART providers were identified using Google searches and an exploratory key. The analysis considered locations, landing page information, ethical standards, quality certification, foreign affiliations, and success rates. The findings revealed a concentration of centers in urban areas, raising concerns about equitable access. The absence of regulation and guidelines, coupled with the lack of ART clinic registration, highlighted potential risks to patient well-being. Landing page statements utilized highly emotive language and ambiguous terms, raising ethical concerns. The absence of explicit mention of quality standards, including ISO 9001:2000 certification, indicated potential gaps in transparency. Foreign affiliations were employed for credibility, raising concerns of misleading advertising. Limited and ambiguous reporting of success rates posed challenges for informed decision-making. Evident exploitative and commercialized practices raised concerns about potentially commodifying reproductive services. The study emphasizes the need for regulatory frameworks, transparency in reporting, adherence to ethical advertising, and increased cultural sensitivity to enhance the ethical standards of ART providers in Bangladesh.

辅助生殖技术(ART)已成为全世界广泛使用的治疗不孕症的医疗技术。然而,各个社会和国家根据其文化习俗和信仰体系应用这些技术。本文概述了孟加拉国的 ART 提供商,并分析了他们针对潜在不孕夫妇的在线内容。研究结合孟加拉国面临的社会经济和公共卫生挑战,尤其是人口过剩、贫困和教育匮乏等问题,对 2023 年 7 月 1 日至 9 月 1 日期间孟加拉国 ART 提供商的网络内容进行了分析。通过谷歌搜索和探索性关键字,确定了 20 家活跃的抗逆转录病毒疗法提供商。分析考虑了地点、登陆页面信息、道德标准、质量认证、国外附属机构和成功率。研究结果显示,这些中心主要集中在城市地区,这引起了人们对公平获取的担忧。缺乏监管和指导方针,再加上缺乏抗逆转录病毒疗法诊所注册,凸显了对患者福祉的潜在风险。登陆页面的声明使用了高度情绪化的语言和模棱两可的术语,引起了道德方面的担忧。没有明确提及质量标准,包括 ISO 9001:2000 认证,表明在透明度方面存在潜在差距。为了提高可信度,使用了外国附属机构,这引起了对误导性广告的担忧。对成功率的报告有限且含糊不清,给知情决策带来了挑战。明显的剥削和商业化做法引起了人们对生殖服务潜在商品化的担忧。这项研究强调,有必要建立监管框架,提高报告的透明度,遵守广告道德,并增强文化敏感性,以提高孟加拉国抗逆转录病毒疗法提供者的道德标准。
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引用次数: 0
Gender Diversity in the Editorial Boards of Global Obstetrics and Gynecology Journals 全球妇产科学期刊编辑委员会的性别多样性。
IF 1.3 Q3 ETHICS Pub Date : 2024-08-16 DOI: 10.1007/s41649-024-00298-1
Seema Rawat, Pratyush Kumar, Lovish Wadhwa

Gender representation in academic and professional settings is crucial for diversity and inclusivity. Editorial boards of scholarly journals shape research priorities, influencing global knowledge flow. In obstetrics and gynecology, with a focus on women’s health, board composition is of particular significance. This paper explores gender representation in international obstetrics and gynecology journal editorial boards, addressing potential disparities. The study adopts a cross-sectional design, analyzing the gender composition of editorial boards in global obstetrics and gynecology journals. A comprehensive search strategy identified relevant journals, using databases and manual searches. Inclusion criteria ensured journals’ language of use and disciplinary scope within obstetrics and gynecology. Ethical considerations prioritized privacy and confidentiality, with data extracted systematically. Genderize.io aided in gender determination of the board members. At the time of writing, among 1175 editorial members from 20 journals, 44.8% are females. Representation varies across roles: editor-in-chief (27.27% female), deputy/executive positions (43.33% female), senior/specialized positions (50.66% female), wider/general positions (45.89% female), nonacademic positions (36% female), external academic positions (19.56% female), honorary/founding positions (33.33% female), and administrative positions (31.03% female). This study contributes a comprehensive analysis of gender representation in obstetrics and gynecology journal editorial boards. Persistent disparities across roles underscore the need for targeted interventions to foster diversity and equity. Ethical considerations emphasize the importance of addressing these disparities for social justice and research integrity. Recommendations to guide journals in fostering inclusive editorial practices, contributing to a more equitable landscape in obstetrics and gynecology research.

学术和专业环境中的性别代表性对多样性和包容性至关重要。学术期刊编辑委员会决定研究重点,影响全球知识流动。在以妇女健康为重点的妇产科,董事会组成具有特别重要的意义。本文探讨了国际妇产科期刊编委会的性别代表性,解决了潜在的差异。本研究采用横断面设计,分析全球妇产科学期刊编委会的性别构成。综合搜索策略确定相关期刊,使用数据库和人工搜索。纳入标准确保了期刊在妇产科的使用语言和学科范围。伦理考虑优先考虑隐私和机密性,系统地提取数据。Genderize。IO协助确定董事会成员的性别。在撰写本文时,来自20家期刊的1175名编辑成员中,女性占44.8%。不同角色的代表性各不相同:总编辑(女性占27.27%)、副/行政职位(女性占43.33%)、高级/专业职位(女性占50.66%)、更广泛/一般职位(女性占45.89%)、非学术职位(女性占36%)、外部学术职位(女性占19.56%)、荣誉/创始职位(女性占33.33%)和行政职位(女性占31.03%)。本研究对妇产科期刊编辑委员会的性别代表性进行了全面分析。角色之间持续存在的差异突出表明,需要采取有针对性的干预措施,以促进多样性和公平性。伦理方面的考虑强调了解决这些差异对社会公正和研究诚信的重要性。建议指导期刊培养包容性编辑实践,促进妇产科研究更公平的环境。
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引用次数: 0
(Not So) Lost in Translation: Considering the GA4GH Diversity in Datasets Policy in the Japanese Context (并非如此)迷失在翻译中:考虑日本背景下数据集中的GA4GH多样性政策。
IF 1.3 Q3 ETHICS Pub Date : 2024-08-16 DOI: 10.1007/s41649-024-00305-5
Momoko Sato, Kaori Muto, Yukihide Momozawa, Yann Joly

The genomics community has long acknowledged the lack of diversity in datasets used for research, prompting various stakeholders to confront this issue. In response, the Global Alliance for Genomics and Health (GA4GH) formulated a policy framework that recognizes the multiplicity of perspectives on diversity and proposed a systemic approach for more optimal data diversity. Given the importance of the research context, assessing this policy’s applicability within countries where diversity is less discussed is important. This study investigated the feasibility of implementing the GA4GH policy in Japan, a nation with a smaller genetic diversity than many Western countries. As the proportion of East Asian genomic research is limited internationally, focusing on the Japanese genome contributes to enhancing diversity. Meanwhile, labelling findings as “Japanese” can inadvertently reinforce perceptions of homogeneity and overlook ethnic minorities. Regions and socioeconomic status are also recognized as substantial factors of diversity within academia, yet concerns persist among the public regarding the heritability of stigmatized conditions. Social inclusion of sexual minorities has begun in Japan, but research surveys generally still use binary sex and gender categories, which underscores the need for additional variables. This study found that both academia and the public need to confront the overemphasis on homogeneity within Japanese society and hesitancy in addressing genetic factors. By doing so, more inclusive and diverse datasets can advance the field both ethically and scientifically. Perhaps the most important impact of the GA4GH policy will be to draw greater attention to the complex diversity challenges ahead in Japan.

长期以来,基因组学界一直承认用于研究的数据集缺乏多样性,这促使各利益相关者正视这一问题。作为回应,全球基因组学与健康联盟(GA4GH)制定了一个政策框架,该框架认识到多样性的多重视角,并提出了一种系统方法,以实现更优化的数据多样性。鉴于研究环境的重要性,在多样性讨论较少的国家评估该政策的适用性非常重要。本研究调查了在遗传多样性低于许多西方国家的日本实施 GA4GH 政策的可行性。由于东亚基因组研究在国际上所占比例有限,关注日本基因组有助于提高多样性。与此同时,将研究结果贴上 "日本 "标签可能会无意中强化同质性观念,忽略少数民族。在学术界,地区和社会经济地位也被认为是多样性的重要因素,但公众对被污名化的病症的遗传性仍然存在担忧。日本已开始将性少数群体纳入社会,但研究调查一般仍使用二元性和性别类别,这凸显了额外变量的必要性。本研究发现,学术界和公众都需要正视日本社会过分强调同质性以及在处理遗传因素时犹豫不决的问题。通过这样做,更具包容性和多样性的数据集可以从道德和科学两方面推动该领域的发展。或许,GA4GH 政策最重要的影响是让人们更加关注日本未来面临的复杂多样性挑战。
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引用次数: 0
Correction to: Secondary Use of Health Data for Medical AI: A Cross‑Regional Examination of Taiwan and the EU 更正:医疗人工智能中健康数据的二次使用:台湾和欧盟的跨区域检查
IF 1.1 Q3 ETHICS Pub Date : 2024-08-16 DOI: 10.1007/s41649-024-00318-0
Chih‑hsing Ho
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引用次数: 0
Review Mechanisms for Advanced Medical Therapies in Japan and Thailand: A Proposal for the Use of Expert Clinical Benefit Assessments at Designated Institutions 日本和泰国先进医学疗法的审查机制:在指定机构使用专家临床效益评估的建议。
IF 1.3 Q3 ETHICS Pub Date : 2024-08-15 DOI: 10.1007/s41649-024-00301-9
Kenji Matsui, Nipan Israsena, Jaranit Kaewkungwal, Pornpimon Adams, David Wendler, Reidar K. Lie

Advanced new therapies, such as stem cell and gene therapies and xenotransplantation, represent challenges for regulatory and ethical review. Major drug agencies, such as in the U.S., India, and Europe, have asserted regulatory authority and require ethics review by local ethics review committees, using the same strict requirements as those for standard drug approvals. In spite of this, unapproved and undocumented stem cell clinics flourish in all of these places, suggesting that current approaches do not offer patients sufficient protection. Japan has attempted another approach, requiring approvals at local levels for all regenerative medical procedures, and a faster approval of promising new interventions. The Japanese approach has, however, also been criticized as not striking a proper balance between early access and a proper assessment of safety and effectiveness. For smaller and less-resourced countries, such as Thailand, one major challenge is limited expertise to conduct the evaluation of these advanced new therapies. This article provides an overview of the issues facing regulators and proposes that countries should restrict the early adoption of advanced new therapies to specialized clinics with appropriate scientific and ethical expertise for review. Review in these institutions should focus on expert clinical benefit assessments for individual patients being offered such interventions, independently of whether they are offered as research or therapy.

先进的新疗法,如干细胞和基因疗法以及异种移植,对监管和伦理审查提出了挑战。美国、印度和欧洲等国家的主要药品监管机构已经确立了监管权威,并要求当地伦理审查委员会进行伦理审查,使用与标准药物批准相同的严格要求。尽管如此,未经批准和未登记的干细胞诊所在所有这些地方蓬勃发展,这表明目前的方法不能为患者提供足够的保护。日本尝试了另一种方法,要求所有再生医疗程序都要得到地方一级的批准,并加快对有前景的新干预措施的批准。然而,日本的做法也被批评为没有在早期获得和适当的安全性和有效性评估之间取得适当的平衡。对于泰国等较小和资源较少的国家来说,一个主要挑战是对这些先进新疗法进行评估的专业知识有限。本文概述了监管机构面临的问题,并建议各国应将先进新疗法的早期采用限制在具有适当科学和伦理专业知识的专门诊所进行审查。这些机构的审查应侧重于专家对提供此类干预措施的个体患者的临床效益评估,而不管这些干预措施是作为研究还是治疗提供的。
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引用次数: 0
Two Approaches of ‘Proactive Consultation’: Towards Well-Functioning Clinical Ethics Consultation “主动咨询”的两种途径:走向良好的临床伦理咨询。
IF 1.3 Q3 ETHICS Pub Date : 2024-08-15 DOI: 10.1007/s41649-024-00302-8
Atsushi Kogetsu, Jungen Koimizu

In recent years, the global need for clinical ethics consultation services (CECS) has increased to address ethical challenges, dilemmas, and moral distress in clinical environments. In Japan, many hospitals have introduced CECS over the past decade, but few such services work effectively because of the small number of consultations. To address this, we propose two proactive ethics consultation methods: inter-professional ethics rounds and patient note reviews. This paper provides a detailed explanation of these methods, complete with scenarios based on actual cases. These methods can make CECS ‘well-functioning’ by shifting the starting points of consultation from consultees to CECS providers. We then examine the impact and value of proactive ethics consultation as well as four critical factors for its success including attitude, positioning, and competency of proactive consultation teams. We believe our suggestions will provide valuable insights for future clinical ethics consultations and stimulate academic debate about what constitutes a ‘well-functioning’ CECS.

近年来,全球对临床伦理咨询服务(CECS)的需求不断增加,以解决临床环境中的伦理挑战、困境和道德困境。在日本,许多医院在过去十年中引进了CECS,但由于咨询人数少,这种服务很少有效。为了解决这个问题,我们提出了两种积极主动的伦理咨询方法:跨专业伦理查房和患者病历审查。本文对这些方法进行了详细的说明,并结合实际案例给出了相应的场景。这些方法通过将咨询的起点从被咨询者转移到CECS提供者,可以使CECS“运转良好”。然后,我们研究了积极主动的道德咨询的影响和价值,以及积极主动的道德咨询团队的态度、定位和能力等四个关键因素。我们相信我们的建议将为未来的临床伦理咨询提供有价值的见解,并激发关于什么是“功能良好”的CECS的学术辩论。
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引用次数: 0
Diversity, Equity, and Inclusion on Editorial Boards of Medical Student Journals 医学生期刊编委会的多样性、公平性和包容性
IF 1.3 Q3 ETHICS Pub Date : 2024-08-14 DOI: 10.1007/s41649-024-00297-2
Muhammad Romail Manan, Iqra Nawaz, Leah Komer, Areeba Salam, Ioana Iustina Chiruţă, Zain Ul Abidin

Ensuring diversity within the healthcare sector is essential for improving team dynamics and ultimately patient outcomes. Diversity among medical students is fundamental to embody this philosophy. With the demand for diversity in the admissions process gaining traction, the authors expanded this conversation to the editorial boards (EBs) of Medical Student Journals (MSJs). The authors designed a cross-sectional study to evaluate the diversity status of EBs of MSJs under gender, geographic, and socioeconomic parameters using the Journal Diversity Index (JDI). Relevant information regarding the journal characteristics and the editorial board members (EBMs) of systematically screened journals was sequentially extracted along with job roles, which were later categorized into eight categories. Chi-squared test was applied to study the association between gender of the editor and the global distribution of the journal. Out of 22 included journals, 90.9% were published by institutions based in high-income countries (HICs). On regional analysis, none of the journals originated from “South Asia,” “Latin America and the Caribbean,” and “Middle East and North Africa”. Disparity in gender representation of EBMs became more prominent in senior roles. Additionally, 78.8% EBMs belonged to HICs. Regional analysis of EBMs revealed 83% belonging to the Global North. This disparity was seen across all editorial job roles. A greater disparity was seen among editors from the Global South with men comprising 66.4% of the total editors (p<0.001). On JDI, 95.5% journals demonstrated poor diversity. Moreover, 72.7% and 77.3% journals had all members of the EB belonging to the same region and the same country income level respectively. As EBs of MSJs offer opportunities for further advancement, networking, and promotion, a commitment to prioritizing diversity, equity, and inclusion accompanied by development and implementation of actionable plans and allocation of sufficient resources should be given precedence.

确保医疗保健行业的多样性对于改善团队活力和最终的患者治疗效果至关重要。医学生的多样性是体现这一理念的基础。随着招生过程中对多样性的要求越来越高,作者将这一话题扩展到了医学生期刊(MSJ)的编辑委员会(EB)。作者设计了一项横断面研究,利用期刊多样性指数(JDI)评估医学生期刊编辑部在性别、地域和社会经济参数方面的多样性状况。研究人员按顺序提取了期刊特征和系统筛选期刊编委会成员(EBMs)的相关信息以及工作角色,并将其分为八类。应用卡方检验研究了编辑性别与期刊全球分布之间的关联。在纳入的 22 种期刊中,90.9% 是由高收入国家(HICs)的机构出版的。从地区分析来看,没有一份期刊来自 "南亚"、"拉丁美洲和加勒比 "以及 "中东和北非"。在高级职位中,经济管理类期刊的性别比例差异更加突出。此外,78.8%的经济管理类期刊属于高收入国家。欧洲管理机构的地区分析显示,83%的机构属于全球北部地区。所有编辑职位都存在这种差异。来自全球南部的编辑之间的差距更大,男性编辑占编辑总数的66.4%(p<0.001)。在 JDI 方面,95.5% 的期刊表现出较低的多样性。此外,分别有 72.7% 和 77.3% 的期刊的所有 EB 成员属于同一地区和同一国家的收入水平。由于 MSJ 的 EB 为进一步发展、建立联系和晋升提供了机会,因此应优先考虑将多样性、公平性和包容性放在首位,同时制定和实施可行的计划并分配足够的资源。
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引用次数: 0
Debate: Should Parents be able to Request Non-Resuscitation for All Extremely Premature Newborn Infants? 辩论:父母是否可以要求对所有极早产儿进行非复苏?
IF 1.3 Q3 ETHICS Pub Date : 2024-08-14 DOI: 10.1007/s41649-024-00299-0
Dominic JC Wilkinson, Julian Savulescu

Infants who are born extremely prematurely can survive if they receive intensive medical treatment. However, they also have a high chance of dying, and a proportion of survivors have long-term health problems and disabilities. In many parts of the world, if parents request it, an extremely premature infant can receive palliative care rather than active survival-focused care at birth. But there are variations between countries as to whether or when this is permitted. To help inform ethical debates across Asia and more widely, we present two contrasting views about parental discretion and the treatment of extremely preterm infants. In questions of this nature, disagreement and dissensus are inevitable. Differences in the outcomes of treatment, the resources available, and the values of society mean that we should not expect a uniform approach. We identify points of potential consensus and compromise despite disagreement.

极度早产的婴儿如果接受强化治疗,可以存活下来。然而,他们也有很高的死亡机会,一部分幸存者有长期的健康问题和残疾。在世界许多地方,如果父母提出要求,极早产儿可以在出生时接受姑息治疗,而不是积极的以生存为重点的护理。但对于是否允许或何时允许,各国之间存在差异。为了帮助亚洲乃至更广泛的伦理辩论,我们提出了两种截然不同的观点,关于父母的自由裁量权和极度早产儿的治疗。在这种性质的问题上,分歧和不同意见是不可避免的。治疗结果、可用资源和社会价值观的差异意味着我们不应期望采用统一的方法。尽管存在分歧,我们仍能确定潜在的共识和妥协点。
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引用次数: 0
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Asian Bioethics Review
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