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All you Need is Trust? Public Perspectives on Consenting to Participate in Genomic Research in the Sri Lankan District of Colombo 你需要的只是信任吗?斯里兰卡科伦坡地区同意参与基因组研究的公众观点
IF 1.3 Q3 ETHICS Pub Date : 2023-11-29 DOI: 10.1007/s41649-023-00269-y
Krishani Jayasinghe, W. A. S. Chamika, Kaushalya Jayaweera, Kalpani Abhayasinghe, Lasith Dissanayake, Athula Sumathipala, Jonathan Ives

Engagement with genomic medicine and research has increased globally during the past few decades, including rapid developments in Sri Lanka. Genomic research is carried out in Sri Lanka on a variety of scales and with different aims and perspectives. However, there are concerns about participants' understanding of genomic research, including the validity of informed consent. This article reports a qualitative study aiming to explore the understanding, knowledge, and attitudes of the Sri Lankan public towards genomic medicine and to inform the development of an effective and appropriate process for informed consent in that setting. Purposive sampling was employed. Participants were recruited from a sub-group of the public in Colombo, Sri Lanka who had either consented or refused to donate genetic material for a biobank. Data were collected using face-to-face semi-structured interviews. Interview data were transcribed verbatim and translated into English. Conventional content analysis was used. The analysis developed three key themes: a) ‘Scientific literacy’ describes an apparent lack of scientific knowledge that seems to affect a participant’s ability to understand the research, b) ‘Motivation’ describes narratives about why participants chose (not) to take part in the research, despite not understanding it, and c) ‘Trust’ describes how trust served to mitigate the apparent ethical deficit created by not being fully informed. In this article, we argue that informed trust is likely an acceptable basis for consent, particularly in settings where scientific literacy might be low. However, researchers must work to be worthy of that trust and ensure that misconceptions are actively addressed.

在过去的几十年里,全球参与基因组医学和研究的人数不断增加,其中包括斯里兰卡的快速发展。斯里兰卡开展了各种规模的基因组研究,目的和视角各不相同。然而,人们担心参与者对基因组研究的理解,包括知情同意的有效性。本文报告了一项定性研究,旨在探讨斯里兰卡公众对基因组医学的理解、知识和态度,并为在这种情况下制定有效、适当的知情同意程序提供信息。研究采用了有目的的抽样方法。参与者是从斯里兰卡科伦坡的一个公众子群体中招募的,他们要么同意要么拒绝为生物库捐赠基因材料。通过面对面的半结构化访谈收集数据。访谈数据被逐字记录并翻译成英文。采用了传统的内容分析方法。分析形成了三个关键主题:a) "科学素养 "描述了参与者明显缺乏科学知识,这似乎影响了参与者理解研究的能力;b) "动机 "描述了参与者为何在不理解研究的情况下选择(不)参与研究;c) "信任 "描述了信任是如何缓解因未充分知情而造成的明显道德缺失的。在本文中,我们认为知情信任很可能是同意的一个可接受的基础,尤其是在科学素养可能较低的情况下。然而,研究人员必须努力不辜负这种信任,并确保积极消除误解。
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引用次数: 0
Providing a Platform for Myriad Forms of Bioethics Research 为各种形式的生物伦理研究提供平台
IF 1.3 Q3 ETHICS Pub Date : 2023-11-15 DOI: 10.1007/s41649-023-00270-5
Graeme T. Laurie
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引用次数: 0
The Limitations of Ethical Review: the Protection-Inclusion Dilemma 伦理审查的局限性:保护与包容的两难选择
IF 1.3 Q3 ETHICS Pub Date : 2023-11-13 DOI: 10.1007/s41649-023-00265-2
Akira Akabayashi, Deborah Zion
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引用次数: 0
Unraveling Informality and Precarity: New Labor Law Strategies for the Global Reproduction Network of Cross-Border Surrogacy 揭开非正规性和不公正性的面纱:跨境代孕全球繁殖网络的新劳动法战略
IF 1.3 Q3 ETHICS Pub Date : 2023-11-13 DOI: 10.1007/s41649-023-00262-5
Yingyi Luo

This paper provides an analysis of the complex global reproduction networks driving the rapidly expanding cross-border surrogacy industry in Asia’s reproductive bioeconomy. It sheds light on the unique features of informal surrogacy networks, notable for their flexible business ties and non-standardized surrogate mother recruitment. These factors contribute to heightened vulnerability for surrogate mothers operating within these networks. While previous literature has underscored the merits of labor law in regulating the surrogacy industry, its application in informal cross-border surrogacy remains under-examined. To address this gap, this research delves into innovative labor law strategies with potential to better regulate the surrogacy sector. Drawing inspiration from progressive labor regulations and supply chain strategies in Bulgaria and Australia, the proposed model aims to redefine the traditional employment relationship. This shift is aimed at bolstering protection for surrogate mothers and enforcing accountability throughout the surrogacy business network. The model further advocates for a collective framework that fosters collaboration and mandates the documentation and registration of surrogacy contracts. Moreover, it underscores the critical significance of international collaboration in bridging regulatory gaps and distributing accountability across consumer and supply states.

本文分析了推动亚洲生殖生物经济跨境代孕产业迅速发展的复杂全球生殖网络。它揭示了非正规代孕网络的独特之处,即灵活的业务联系和非标准化的代孕母亲招聘。这些因素加剧了在这些网络中运作的代孕母亲的脆弱性。以往的文献强调了劳动法在规范代孕行业方面的优点,但对其在非正规跨境代孕中的应用仍未进行充分研究。为了弥补这一不足,本研究深入探讨了有可能更好地规范代孕行业的创新劳动法策略。从保加利亚和澳大利亚进步的劳动法规和供应链战略中汲取灵感,所提出的模式旨在重新定义传统的雇佣关系。这一转变旨在加强对代孕母亲的保护,并在整个代孕业务网络中落实问责制。该模式还主张建立一个集体框架,以促进合作,并规定代孕合同的记录和登记。此外,它还强调了国际合作在弥合监管差距以及在消费者和供应国之间分配责任方面的重要意义。
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引用次数: 0
Ethical Issues in Photovoice Studies involving Key Populations: A Scoping Review 涉及关键人群的摄影选择研究中的伦理问题:范围审查
IF 1.3 Q3 ETHICS Pub Date : 2023-11-13 DOI: 10.1007/s41649-023-00264-3
Chong Guan Ng, Sing Qin Ting, Rumana Akhter Saifi, Adeeba Bt Kamarulzaman

Photovoice, a community-based participatory research method, employs images and words to convey participants' needs, concerns, and desires. It proves particularly valuable in researching marginalized communities who face elevated health risks, disease transmission, and social and health disparities. This paper seeks to investigate the ethical considerations inherent in photovoice research projects. We conducted an extensive literature review spanning four databases to identify pertinent photovoice studies. Ethical issues from the selected articles were identified, categorized, and summarized. Our analysis of twenty-five photovoice studies uncovered various ethical concerns, which had been grouped into informed consent, participant safety and disclosure, privacy and confidentiality, misrepresentation, power dynamics, and compensation. In essence, our findings underscore the importance of addressing these ethical concerns to uphold the rights and autonomy of participants, even as photovoice research strives for authenticity, inclusivity, and empowerment.

摄影声音是一种基于社区的参与式研究方法,它利用图像和文字来表达参与者的需求、关注和愿望。事实证明,这种方法在研究面临高健康风险、疾病传播以及社会和健康差异的边缘化社区时尤其有价值。本文旨在探讨摄影选言研究项目中固有的伦理考虑因素。我们对四个数据库进行了广泛的文献综述,以确定相关的摄影选择研究。我们对所选文章中的伦理问题进行了识别、分类和总结。我们对 25 篇摄影选择研究进行了分析,发现了各种伦理问题,并将其归纳为知情同意、参与者安全与披露、隐私与保密、失实陈述、权力动态和补偿。从本质上讲,我们的研究结果强调了解决这些伦理问题的重要性,以维护参与者的权利和自主权,即使摄影选择研究努力追求真实性、包容性和赋权。
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引用次数: 0
Characteristics of Life-Sustaining Treatment Decisions: National Data Analysis in South Korea 维持生命治疗决定的特点:韩国全国数据分析
IF 1.3 Q3 ETHICS Pub Date : 2023-11-11 DOI: 10.1007/s41649-023-00266-1
Jiyeon Choi, Heejung Jeon, Ilhak Lee

This study analyzed the national data on life-sustaining treatment decisions from 2018 to 2020 to find out the characteristics of South Korea’s end-of-life procedure according to the decision-making approach and process. We collected the data of 84,422 patients registered with the National Agency for Management of Life-sustaining Treatment. We divided the patients into four groups (G1, G2, G3, and G4) according to the decision-making approach. A descriptive analysis of each group was conducted using indicators such as the patient’s age, status, diagnosis, and content of forgoing life-sustaining treatment. Additionally, logistic regression analysis was performed by dividing the patients into self-determining (G1, G2) and non-self-determining patients (G3, G4). Cancer was the most common diagnosis for each group. The period from life-sustaining treatment decision to implementation was 10.76, 1.01, 0.86, and 1.19 days for G1, G2, G3, and G4, respectively. In the logistic regression analysis, the self-determination ratio was higher for 40–49 years old and lower for cardiovascular disease and gastrointestinal disease. Age was has a major impact on life-sustaining treatment decisions (LSTD), and with increase in age, the family, and not the patient, made the LSTD. The LSTD method also differed depending on the disease. The self-determination rates of patients with circulatory or digestive diseases were somewhat lower than that of those with neoplastic diseases. The period from decision-making to implementation is short for end-of-life care.

本研究分析了 2018 年至 2020 年维持生命治疗决策的全国数据,以根据决策方法和流程了解韩国临终程序的特点。我们收集了在国家维持生命治疗管理机构登记的 84422 名患者的数据。我们根据决策方法将患者分为四组(G1、G2、G3 和 G4)。我们使用患者的年龄、状况、诊断和放弃维持生命治疗的内容等指标对各组进行了描述性分析。此外,还将患者分为自主决定患者(G1、G2)和非自主决定患者(G3、G4),进行了逻辑回归分析。癌症是各组中最常见的诊断。G1、G2、G3 和 G4 从决定维持生命治疗到实施的时间分别为 10.76 天、1.01 天、0.86 天和 1.19 天。在逻辑回归分析中,40-49 岁患者的自我决定比率较高,而心血管疾病和胃肠道疾病患者的自我决定比率较低。年龄对维持生命治疗决定(LSTD)有重大影响,随着年龄的增长,由家属而非患者做出维持生命治疗决定。不同疾病的患者做出维持生命治疗决定的方法也不尽相同。循环系统疾病或消化系统疾病患者的自我决定率略低于肿瘤疾病患者。临终关怀从决策到实施的时间很短。
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引用次数: 0
Shinmi (親身): a Distinctive Japanese Medical Virtue? 信美(亲身):日本独特的医德?
IF 1.3 Q3 ETHICS Pub Date : 2023-11-04 DOI: 10.1007/s41649-023-00261-6
Reina Ozeki-Hayashi, Dominic J. C. Wilkinson

In Western countries, the ideal professional and ethical attributes of healthcare providers and the ideal patient-doctor relationship have been analysed in detail. Other cultures, however, may have different norms, arising in response to diverse healthcare needs, cultural values and offering alternative perspectives. In this paper, drawing a case study, we introduce the concept of Shinmi, used in Japan to describe a desirable approach to medical care. Shinmi means kind or cordial in Japanese. In the medical context, it refers to doctors treating patients with a degree of emotional closeness as if they were the doctors’ own family. We analyse the concept of Shinmi, drawing on virtue ethics. We distinguish two different elements to a Shinmi-na attitude. As illustrated in our example, excessive Shinmi can be problematic for patients and doctors. Furthermore, elements of Shinmi may conflict with existing Western values (for example, norms that encourage emotional detachment and discourage doctors’ treatment of family members). However, if pursued appropriately, we argue that a balanced Shinmi-na approach can be conducive to the goals of medicine. The concept of Shinmi may be valuable for medical students, in Japanese and potentially other health care systems, and help them to cultivate a virtuous approach to meeting the emotional needs of patients.

在西方国家,对医疗服务提供者的理想职业和道德属性以及理想的医患关系进行了详细分析。然而,其他文化可能会有不同的规范,这些规范产生于不同的医疗保健需求、文化价值观,并提供了不同的视角。在本文中,我们通过一个案例研究,介绍了日本用来描述理想医疗护理方法的 "Shinmi "概念。在日语中,Shinmi 的意思是亲切或友好。在医疗环境中,它指的是医生在对待病人时,在情感上给予病人一定程度的亲近感,就好像病人是医生自己的家人一样。我们借鉴美德伦理学,分析了 "亲切 "的概念。我们将新美学态度分为两种不同的要素。正如我们的例子所示,过度的 "信美 "会给患者和医生带来问题。此外,"信美 "的要素可能与现有的西方价值观相冲突(例如,鼓励情感疏离和不鼓励医生对待家庭成员的规范)。然而,我们认为,如果追求得当,平衡的 "神医 "方法有助于实现医学目标。在日本和其他潜在的医疗保健体系中,"神医 "的概念可能对医科学生很有价值,有助于他们培养满足患者情感需求的良性方法。
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引用次数: 0
Beyond Public Health and Private Choice: Breastfeeding, Embodiment and Public Health Ethics 超越公共卫生与私人选择:母乳喂养、体现与公共卫生伦理
IF 1.3 Q3 ETHICS Pub Date : 2023-10-26 DOI: 10.1007/s41649-023-00259-0
Supriya Subramani

The key objective of this paper is to emphasize the importance of acknowledging breastfeeding as an embodied social practice within interventions related to breastfeeding and lactation and illustrate how this recognition holds implications for public health ethics debates. Recent scholarship has shown that breastfeeding and lactation support interventions undermine women’s autonomy. However, substantial discourse is required to determine how to align with public health goals while also recognizing the embodied experiences of breastfeeding and lactating individuals. Presently, interventions in this realm predominantly revolve around health-related messaging and the promotion of individual behaviors, often neglecting the systemic and structural factors that influence choices and practices. I closely examine breastfeeding interventions in India, in particular Mothers’ Absolute Affection health promotion program, along with breastfeeding narratives. I argue that for such interventions to evolve, they must acknowledge the intrinsic embodied social nature of breastfeeding during their design and implementation. Furthermore, it is important to emphasize that achieving equity and justice objectives necessitates moving beyond the confines of both conventional public health frameworks and frameworks solely centered on private choices. Instead, a more encompassing approach that embraces the concept of embodiment should be adopted.

本文的主要目的是强调在与母乳喂养和泌乳相关的干预措施中承认母乳喂养是一种体现性社会实践的重要性,并说明这种认识如何对公共卫生伦理辩论产生影响。最近的学术研究表明,母乳喂养和哺乳支持干预会损害妇女的自主权。然而,要确定如何与公共卫生目标保持一致,同时又承认母乳喂养和哺乳期个体的体现性体验,还需要进行大量的讨论。目前,这一领域的干预措施主要围绕与健康相关的信息传递和个人行为的推广,往往忽视了影响选择和实践的系统性和结构性因素。我仔细研究了印度的母乳喂养干预措施,特别是 "母亲的绝对关爱 "健康促进计划以及母乳喂养叙事。我认为,此类干预措施要想发展,就必须在设计和实施过程中承认母乳喂养内在的社会性。此外,必须强调的是,要实现公平和公正的目标,就必须超越传统的公共卫生框架和仅以私人选择为中心的框架。相反,应该采用一种包含更多内容的方法,将 "体现 "的概念纳入其中。
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引用次数: 0
Nurturing Ethical Leadership and Equity in Malaysia: Report from the Third National Paediatric Bioethics Symposium 在马来西亚培养伦理领导力和公平:第三届全国儿科生命伦理学研讨会报告
IF 1.3 Q3 ETHICS Pub Date : 2023-10-24 DOI: 10.1007/s41649-023-00263-4
Erwin Jiayuan Khoo
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引用次数: 0
Islamic Viewpoints on Opportunistic Sex Selection of IVF Embryos upon doing Preimplantation Genetic Testing for Preventing Genetic Diseases 伊斯兰教关于为预防遗传疾病而进行植入前基因检测时对试管婴儿胚胎进行机会性性别选择的观点
IF 1.3 Q3 ETHICS Pub Date : 2023-10-14 DOI: 10.1007/s41649-023-00258-1
Sayyed Mohamed Muhsin, Shaima Zohair Arab, Alexis Heng Boon Chin

In recent years, preimplantation genetic testing (PGT) of IVF embryos have gained much traction in clinical assisted reproduction for preventing various genetic defects, including Down syndrome. However, such genetic tests inevitably reveal the sex of IVF embryos by identifying the sex (X and Y) chromosomes. In many countries with less stringent IVF regulations, information on the sex of embryos that are tested to be genetically normal is readily shared with patients. This would thus present Muslim patients with unintended opportunities for sex selection based on personal or social biases without any pressing need or valid medical reason. Additionally, there are other patients who claim using PGT for preventing genetic defects as a pretext or “convenient excuse,” with a secret intention to do sex selection when it is banned in their home country. Currently, non-medical sex selection is a highly-controversial and hotly debated issue in Islam, because there is generally a strong preference for having sons over daughters due to widespread cultural norms of elderly parents depending on their sons for financial support, as well as the need for male heirs to continue the family lineage within the backdrop of local patriarchal cultures. There is a risk of gender imbalance and social disequilibrium occurring in Islamic societies due to prevalent sex selection. Hence, the question is whether opportunistic sex selection with PGT would contravene Islamic ethics and principles, which will thus be discussed here.

近年来,体外受精胚胎植入前基因检测(PGT)在临床辅助生殖中得到广泛应用,以预防包括唐氏综合症在内的各种遗传缺陷。然而,此类基因检测通过识别性染色体(X 和 Y),不可避免地会揭示试管婴儿胚胎的性别。在许多试管婴儿法规不太严格的国家,经检测基因正常的胚胎性别信息很容易与患者共享。这样,穆斯林患者就有机会在没有任何迫切需要或合理医疗理由的情况下,根据个人或社会偏见进行性别选择。此外,还有一些患者声称,他们以预防遗传缺陷为借口或 "方便的托辞",暗中打算在本国禁止性别选择时进行性别选择。目前,在伊斯兰教中,非医学性别选择是一个极具争议和热议的问题,因为在当地父权制文化背景下,普遍存在重男轻女的文化习俗,年迈的父母依靠儿子提供经济支持,而且需要男性继承人来延续家族血脉。由于普遍存在性别选择,伊斯兰社会有可能出现性别失衡和社会失衡。因此,问题在于使用 PGT 进行机会性性别选择是否违反伊斯兰教伦理和原则,本文将就此展开讨论。
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引用次数: 0
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Asian Bioethics Review
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