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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
Clinical Ethics Consultation in Japan: What does it Mean to have a Functioning Ethics Consultation? 日本的临床伦理咨询:有效的伦理咨询意味着什么?
IF 1.3 Q3 ETHICS Pub Date : 2023-09-06 DOI: 10.1007/s41649-023-00257-2
Noriko Nagao, Yoshiyuki Takimoto

This research examines the current status of clinical ethics consultation (CEC) in Japan through a nationwide study conducted with chairs of ethics committees and clinical ethics committees among 1028 post-graduate clinical teaching hospitals. We also qualitatively analyzed their viewpoints of the CEC’s benefits and problems related to hospital consultation services to identify the critical points for CEC and inform the development of a correctly functioning system. The questionnaire included structured questions about hospital CEC organization and service purpose and operation and open-ended questions about the benefits and problems of initiating CEC. The questionnaire comprised the presence/absence of an ethics committee, CEC services and membership when services were implemented, users, and the number of cases handled since inception. In addition, the respondents also provided their impressions of the CEC system’s impact on their hospital by describing (a) the benefits of CEC services and (b) the ineffectual or harmful aspects of the CEC system. Qualitative data were examined using qualitative content analysis to determine the impact of establishing a CEC and the difficulties of practice. One hundred twenty-five questionnaires were returned from either the chair of the ethics committee or clinical ethics committee in teaching hospitals. Of these, 90 (72%) reported they provided CEC services. Additionally, 36 respondents (34.6%) reported that their existing research and clinical ethics committees had conducted CEC services, and 35 (33.7%) reported having a newly established clinical ethics committee conducting CEC services. Three positive effects of establishing and four challenges in managing CEC were also identified.

本研究通过在全国范围内对 1028 家研究生临床教学医院的伦理委员会主席和临床伦理委员会进行调查,研究了日本临床伦理咨询(CEC)的现状。我们还定性分析了他们对 CEC 的益处以及与医院咨询服务相关的问题的看法,以确定 CEC 的关键点,为建立一个正确运作的系统提供信息。调查问卷包括有关医院 CEC 组织和服务目的及运作的结构性问题,以及有关启动 CEC 的益处和问题的开放式问题。问卷内容包括医院是否设有伦理委员会、伦理委员会的服务内容和服务实施时的成员情况、用户情况以及伦理委员会成立以来处理的病例数量。此外,受访者还通过描述 (a) CEC 服务的益处和 (b) CEC 系统的无效或有害方面,提供了他们对 CEC 系统对医院影响的印象。我们使用定性内容分析法对定性数据进行了研究,以确定建立 CEC 的影响和实践中的困难。教学医院的伦理委员会主席或临床伦理委员会共收回 125 份调查问卷。其中 90 人(72%)表示他们提供了 CEC 服务。此外,36 名受访者(34.6%)称其现有的研究和临床伦理委员会已开展 CEC 服务,35 名受访者(33.7%)称其新成立的临床伦理委员会已开展 CEC 服务。受访者还指出了建立临床伦理委员会的三个积极影响和管理临床伦理委员会的四个挑战。
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引用次数: 0
Bioethics in Northeast Asia 东北亚的生物伦理学。
IF 2.9 Q1 Arts and Humanities Pub Date : 2023-09-04 DOI: 10.1007/s41649-023-00260-7
Graeme T. Laurie
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引用次数: 0
Remote Technologies and Filial Obligations at a Distance: New Opportunities and Ethical Challenges 远程技术与远距离的孝道义务:新的机遇和伦理挑战。
IF 2.9 Q1 Arts and Humanities Pub Date : 2023-09-01 DOI: 10.1007/s41649-023-00256-3
Yi Jiao (Angelina) Tian, Fabrice Jotterand, Tenzin Wangmo

The coupled growth of population aging and international migration warrants attention on the methods and solutions available to adult children living overseas to provide distance caregiving for their aging parents. Despite living apart from their parents, the transnational informal care literature has indicated that first-generation immigrants remain committed to carry out their filial caregiving obligations in extensive and creative ways. With functions to remotely access health information enabled by emergency, wearable, motion, and video sensors, remote monitoring technologies (RMTs) may thus also allow these international migrants to be alerted in sudden changes and remain informed of their parent’s state of health. As technological solutions for caregiving, RMTs could allow independent living for older persons while any unusual deviations from normal health patterns are detected and appropriately supported. With a vignette of a distance care arrangement, we engage with concepts such as filial piety, in-absentia caregiving distress, and the social exchange theory, as well as the upholding of shifting cultural ideals to illustrate the complex dynamic of the satisfaction and quality of the informal caregiving relationship. This paper extends the traditional ethical issues in technology-aided caregiving, such as autonomy, privacy, and justice, to be considered within the context of distance care. We also posit newer ethical considerations such as consent in power imbalances, harm to caregivers, and stigma. These known and new ethical issues aim to encourage further ethically conscious design and use of RMTs to support distance care for older persons.

人口老龄化和国际移民的双重增长需要关注居住在海外的成年儿童为年迈的父母提供远程护理的方法和解决方案。尽管与父母分开生活,跨国非正规护理文献表明,第一代移民仍然致力于以广泛和创造性的方式履行他们的孝顺照顾义务。通过紧急、可穿戴、运动和视频传感器实现的远程访问健康信息的功能,远程监测技术也可以让这些国际移民在突然变化时得到警报,并随时了解他们父母的健康状况。作为护理的技术解决方案,RMT可以让老年人独立生活,同时发现并适当支持任何与正常健康模式的异常偏差。通过一个关于远程护理安排的小插曲,我们引入了孝顺、缺席护理痛苦、社会交换理论以及对不断变化的文化理想的坚持等概念,以说明非正式护理关系的满意度和质量的复杂动态。本文将技术辅助护理中的传统伦理问题,如自主性、隐私和正义,扩展到远程护理的背景下加以考虑。我们还提出了新的伦理考虑,如权力失衡中的同意、对照顾者的伤害和污名化。这些已知的和新的伦理问题旨在鼓励有道德意识的RMT的进一步设计和使用,以支持老年人的远程护理。
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引用次数: 0
Assisted Reproductive Technology (Regulation) Act 2021: Critique and Contestations 2021 年辅助生殖技术(监管)法案》:批判与争议。
IF 1.3 Q3 ETHICS Pub Date : 2023-07-11 DOI: 10.1007/s41649-023-00253-6
Soumya Kashyap, Priyanka Tripathi

The article critically examines the Assisted Reproductive Technology (Regulation) Act 2021, its development process spanning 15 years, and its potential shortcomings in addressing the needs of India’s 27 million infertile couples. By scrutinizing the recommendations presented in the Parliamentary Standing Committee on Health and Family Welfare’s 129th report, the critique argues that the Act may not effectively cater to the diverse reproductive rights of the population. The article claims that most of its suggestions are in opposition to redefining families and accepting inclusive family structures other than heterosexual marriages. The study posits that the Act, with its inherent limitations, perpetuates the reinforcement of patriarchal family structures that medical science intends to disrupt. In order to foster inclusivity and comprehensibility, the article advocates for necessary amendments that align with the interest of the general populace.

文章批判性地审视了《2021 年辅助生殖技术(管理)法案》、其长达 15 年的发展过程,以及在满足印度 2 700 万不孕夫妇需求方面可能存在的不足。通过仔细研究卫生与家庭福利议会常务委员会第 129 号报告中提出的建议,该评论认为该法案可能无法有效地满足人口的各种生殖权利。文章称,委员会的大部分建议都与重新定义家庭和接受异性婚姻以外的包容性家庭结构背道而驰。研究认为,《法案》因其固有的局限性,使父权制家庭结构得到了永久性的强化,而医学科学正是要打破这种结构。为了促进包容性和可理解性,文章主张进行必要的修订,以符合大众的利益。
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引用次数: 0
期刊
Asian Bioethics Review
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