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Living ethics: a stance and its implications in health ethics. 生活伦理:一种立场及其对健康伦理的影响。
IF 2.1 2区 哲学 Q1 ETHICS Pub Date : 2024-06-01 Epub Date: 2024-03-13 DOI: 10.1007/s11019-024-10197-9
Eric Racine, Sophie Ji, Valérie Badro, Aline Bogossian, Claude Julie Bourque, Marie-Ève Bouthillier, Vanessa Chenel, Clara Dallaire, Hubert Doucet, Caroline Favron-Godbout, Marie-Chantal Fortin, Isabelle Ganache, Anne-Sophie Guernon, Marjorie Montreuil, Catherine Olivier, Ariane Quintal, Abdou Simon Senghor, Michèle Stanton-Jean, Joé T Martineau, Andréanne Talbot, Nathalie Tremblay

Moral or ethical questions are vital because they affect our daily lives: what is the best choice we can make, the best action to take in a given situation, and ultimately, the best way to live our lives? Health ethics has contributed to moving ethics toward a more experience-based and user-oriented theoretical and methodological stance but remains in our practice an incomplete lever for human development and flourishing. This context led us to envision and develop the stance of a "living ethics", described in this inaugural collective and programmatic paper as an effort to consolidate creative collaboration between a wide array of stakeholders. We engaged in a participatory discussion and collective writing process known as instrumentalist concept analysis. This process included initial local consultations, an exploratory literature review, the constitution of a working group of 21 co-authors, and 8 workshops supporting a collaborative thinking and writing process. First, a living ethics designates a stance attentive to human experience and the role played by morality in human existence. Second, a living ethics represents an ongoing effort to interrogate and scrutinize our moral experiences to facilitate adaptation of people and contexts. It promotes the active and inclusive engagement of both individuals and communities in envisioning and enacting scenarios which correspond to their flourishing as authentic ethical agents. Living ethics encourages meaningful participation of stakeholders because moral questions touch deeply upon who we are and who we want to be. We explain various aspects of a living ethics stance, including its theoretical, methodological, and practical implications as well as some barriers to its enactment based on the reflections resulting from the collaborative thinking and writing process.

道德或伦理问题至关重要,因为它们影响着我们的日常生活:什么是我们可以做出的最佳选择,什么是在特定情况下应采取的最佳行动,以及最终什么是我们生活的最佳方式?健康伦理学有助于将伦理学推向更加以经验为基础、更加以用户为导向的理论和方法论立场,但在我们的实践中,它仍然是人类发展和繁荣的一个不完整的杠杆。在这一背景下,我们构想并发展了 "生活伦理学 "的立场,并在这篇首篇集体和计划性论文中加以阐述,以努力巩固广泛的利益相关者之间的创造性合作。我们开展了一个参与式讨论和集体写作过程,即工具主义概念分析。这一过程包括初步的地方咨询、探索性的文献回顾、由 21 位共同作者组成的工作组的组建,以及 8 次支持协作思考和写作过程的研讨会。首先,"活的伦理 "是一种关注人类经验和道德在人类生存中所扮演角色的立场。其次,"活的伦理 "代表着一种持续不断的努力,即对我们的道德经验进行审视和检查,以促进人与环境的适应。它提倡个人和社群积极地、包容性地参与设想和制定与他们作为真正的道德主体的繁荣相适应的方案。活生生的伦理鼓励利益攸关方有意义的参与,因为道德问题深深触及我们是谁以及我们想成为谁。我们解释了生活伦理立场的各个方面,包括其理论、方法和实践意义,以及基于合作思考和写作过程中的反思而产生的一些实施障碍。
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引用次数: 0
No (true) right to die: barriers in access to physician-assisted death in case of psychiatric disease, advanced dementia or multiple geriatric syndromes in the Netherlands. 没有(真正的)死亡权利:荷兰在精神疾病、晚期痴呆或多种老年综合症情况下获得医生协助死亡的障碍。
IF 2.1 2区 哲学 Q1 ETHICS Pub Date : 2024-06-01 Epub Date: 2024-02-20 DOI: 10.1007/s11019-023-10190-8
Caroline van den Ende, Eva Constance Alida Asscher

Even in the Netherlands, where the practice of physician-assisted death (PAD) has been legalized for over 20 years, there is no such thing as a 'right to die'. Especially patients with extraordinary requests, such as a wish for PAD based on psychiatric suffering, advanced dementia, or (a limited number of) multiple geriatric syndromes, encounter barriers in access to PAD. In this paper, we discuss whether these barriers can be justified in the context of the Dutch situation where PAD is legally permitted for those who suffer unbearably and hopelessly as a result of medical conditions. Furthermore, we explore whether there are options to address some of the barriers or their consequences, both within the Dutch legal framework or by adjusting the legal framework, and whether these options are feasible. We conclude that although there are insufficient arguments to overrule the doctor's freedom of conscience in the Netherlands, there are ways to address some of the barriers, mainly by offering support to doctors that would be willing to support a request. Moreover, we believe it is morally required to reduce or mitigate where possible the negative consequences of the barriers for patients, such as the long waiting time for those who suffer from psychiatric disorders, because it is unlikely the adjustments suggested to the system will ensure reasonable access for these patient groups.

即使在荷兰,医生协助死亡(PAD)合法化已有 20 多年,也没有所谓的 "死亡权"。尤其是有特殊要求的患者,例如因精神痛苦、晚期痴呆或(少数)多种老年综合症而希望接受医生协助死亡的患者,在接受医生协助死亡时会遇到障碍。在本文中,我们将讨论在荷兰的情况下,这些障碍是否合理,因为在荷兰,法律允许那些因医疗条件而遭受难以忍受的痛苦和绝望的人使用 PAD。此外,我们还探讨了是否有办法在荷兰法律框架内或通过调整法律框架来解决某些障碍或其后果,以及这些办法是否可行。我们的结论是,尽管在荷兰没有足够的论据来推翻医生的良心自由,但还是有办法解决一些障碍,主要是向愿意支持请求的医生提供支持。此外,我们认为,从道义上讲,有必要尽可能减少或减轻这些障碍对病人造成的负面影响,如精神病患者漫长的等待时间,因为对制度的调整建议不太可能确保这些病人群体合理地获得治疗。
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引用次数: 0
Embodiment and regenerative implants: a proposal for entanglement. 体现与再生植入物:关于纠缠的建议。
IF 2.1 2区 哲学 Q1 ETHICS Pub Date : 2024-06-01 Epub Date: 2024-03-16 DOI: 10.1007/s11019-024-10199-7
Manon van Daal, Anne-Floor J de Kanter, Karin R Jongsma, Annelien L Bredenoord, Nienke de Graeff

Regenerative Medicine promises to develop treatments to regrow healthy tissues and cure the physical body. One of the emerging developments within this field is regenerative implants, such as jawbone or heart valve implants, that can be broken down by the body and are gradually replaced with living tissue. Yet challenges for embodiment are to be expected, given that the implants are designed to integrate deeply into the tissue of the living body, so that implant and body become one. In this paper, we explore how regenerative implants may affect the embodied experience of implant recipients. To this end, we take a phenomenological approach. First, we explore what insights the existing phenomenological and empirical literature on embodiment offers regarding the experience of illness and of living with regular (non-regenerative) implants and organ transplants. Second, we apply these insights to better understand how future implant recipients might experience living with regenerative implants. Third, we conclude that concepts and considerations from the existing phenomenological literature do not sufficiently address what it might be like to live with an implantable technology that, over time, becomes one with the living body. We argue that the interwovenness and intimate relationship of people living with regenerative implants should be understood in terms of 'entanglement'. Entanglement allows us to explore the complexities of human-technology relations, acknowledging the inseparability of humans and implantable technologies. Our theoretical foundations regarding the role of embodiment may be tested empirically once more people will be living with regenerative implants.

再生医学有望开发出再生健康组织和治疗身体的疗法。这一领域的新兴发展之一是再生植入物,如颌骨或心脏瓣膜植入物,可被人体分解,并逐渐被活体组织取代。然而,由于植入物的设计目的是与活体组织深度融合,使植入物与人体合二为一,因此在体现方面的挑战也是意料之中的。在本文中,我们将探讨再生植入物可能会如何影响植入物接受者的体现体验。为此,我们采用了一种现象学方法。首先,我们探讨了现有的现象学和实证文献对疾病体验以及常规(非再生性)植入体和器官移植的生活体验提供了哪些启示。其次,我们运用这些见解来更好地理解未来的植入物接受者如何体验与再生植入物一起生活。第三,我们得出的结论是,现有现象学文献中的概念和考虑因素并不足以解决与植入式技术共同生活的感受,随着时间的推移,植入式技术将与活体融为一体。我们认为,应该从 "纠缠 "的角度来理解与再生植入体共同生活的人们之间的相互交织和亲密关系。纠缠使我们能够探索人类与技术关系的复杂性,承认人类与植入技术的不可分割性。一旦有更多人与再生植入体生活在一起,我们关于体现作用的理论基础就可以得到实证检验。
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引用次数: 0
Severity and death. 严重程度和死亡。
IF 2.1 2区 哲学 Q1 ETHICS Pub Date : 2024-06-01 Epub Date: 2024-02-08 DOI: 10.1007/s11019-024-10193-z
Adam Ehlert

This article discusses the relationship between two theories about the badness of death, the Life-Comparative Account and the Gradualist Account, and two methods of operationalizing severity in health care priority setting, Absolute Shortfall and Proportional Shortfall. The aim is that theories about the badness of death can influence and inform the idea of the basis of severity as a priority setting criterion. I argue that there are strong similarities between the Life-Comparative Account and Absolute Shortfall, and since the Life-Comparative Account is one of the most reasonable accounts of the badness of death, this provides some support for using Absolute Shortfall. I also argue that it is difficult to find support for Proportional Shortfall from theories about the badness of death, and also, that it is difficult to find support for Gradualist Account from theories about severity.

本文讨论了关于死亡严重性的两种理论--生命比较理论和渐进理论--与医疗优先级设定中严重性的两种操作方法--绝对短缺和比例短缺之间的关系。这样做的目的是,关于死亡坏处的理论可以影响和指导将严重程度作为确定优先级标准的基础的想法。我认为,"生命比较理论 "与 "绝对短缺理论 "之间有很强的相似性,由于 "生命比较理论 "是对死亡严重性最合理的解释之一,这为使用 "绝对短缺理论 "提供了一些支持。我还认为,从有关死亡坏处的理论中很难找到对 "比例短缺说 "的支持,同样,从有关严重性的理论中也很难找到对 "渐进说 "的支持。
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引用次数: 0
Fostering dialogue: a phenomenological approach to bridging the gap between the "voice of medicine" and the "voice of the lifeworld". 促进对话:弥合 "医学之声 "与 "生活世界之声 "之间差距的现象学方法。
IF 2.1 2区 哲学 Q1 ETHICS Pub Date : 2024-06-01 Epub Date: 2024-01-29 DOI: 10.1007/s11019-024-10195-x
Junguo Zhang

This article adopts Husserl's transcendental phenomenology to explore the complex relationship between patients and physicians. It delves into the coexistence of two distinct voices in the realm of medicine and health: the "voice of medicine" and the "voice of life-world." Divided into three sections, the article emphasizes the importance of shifting from a scientific-medical attitude to a more personalistic approach in physician-patient interactions. This shift aims to prevent depersonalization and desubjectification. Additionally, it highlights the equal and irreducible nature of patients while acknowledging the vital role physicians hold in the realm of illness. The article stresses the need for a balanced and equitable relationship between both parties, rooted in the shared life-world. Moreover, empathy is underscored as a crucial element in fostering meaningful dialogue, wherein understanding diverse perspectives and attitudes towards illness is paramount. The article argues that differences between patients and physicians are necessary for empathy, while shared similarities form its foundation. Ultimately, a harmonious relationship facilitates empathy and enables the constitution of a new sense of life for both patients and physicians.

本文采用胡塞尔的超验现象学来探讨病人与医生之间的复杂关系。文章深入探讨了医学和健康领域中两种不同声音的共存:"医学的声音 "和 "生命世界的声音"。文章分为三个部分,强调了在医患互动中从科学-医学态度转变为更具个人主义态度的重要性。这种转变旨在防止人格解体和去主体化。此外,文章还强调了病人的平等性和不可还原性,同时承认医生在疾病领域所扮演的重要角色。文章强调,双方需要建立一种植根于共同生活世界的平衡、平等的关系。此外,文章还强调同理心是促进有意义对话的关键因素,其中理解不同的观点和对疾病的态度至关重要。文章认为,病人和医生之间的差异是共情的必要条件,而共同的相似性则是共情的基础。最终,和谐的关系能促进共鸣,并为病人和医生带来新的生命感。
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引用次数: 0
Who has a meaningful life? A care ethics analysis of selective trait abortion. 谁的人生有意义?选择性人工流产的护理伦理分析。
IF 2.1 2区 哲学 Q1 ETHICS Pub Date : 2024-06-01 Epub Date: 2024-02-02 DOI: 10.1007/s11019-023-10192-6
Riley Clare Valentine

Trait Selective Abortions (TSA) have come under critique as a medical practice that presents potential disabled infants as burdens and lacking the potential for meaningful lives. This paper, using the author's background as a disabled person, contends that the philosophy underpinning TSAs reflects liberal society's lack of a theory of needs. The author argues for a care ethics based approach informed by disability analyses to engage with TSAs.

特质选择性人工流产(TSA)作为一种将潜在残疾婴儿视为负担和缺乏有意义生活潜能的医疗实践而受到批评。本文作者利用自己的残疾人背景,认为特质选择性人工流产的理念反映了自由社会缺乏需求理论。作者主张采用一种以护理伦理为基础、以残疾分析为依据的方法来处理 TSAs 问题。
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引用次数: 0
Discovering clinical phronesis. 发现临床phronesis。
IF 2.1 2区 哲学 Q1 ETHICS Pub Date : 2024-06-01 Epub Date: 2024-03-07 DOI: 10.1007/s11019-024-10198-8
Donald Boudreau, Hubert Wykretowicz, Elizabeth Anne Kinsella, Abraham Fuks, Michael Saraga

Phronesis is often described as a 'practical wisdom' adapted to the matters of everyday human life. Phronesis enables one to judge what is at stake in a situation and what means are required to bring about a good outcome. In medicine, phronesis tends to be called upon to deal with ethical issues and to offer a critique of clinical practice as a straightforward instrumental application of scientific knowledge. There is, however, a paucity of empirical studies of phronesis, including in medicine. Using a hermeneutic and phenomenological approach, this inquiry explores how phronesis is manifest in the stories of clinical practice of eleven exemplary physicians. The findings highlight five overarching themes: ethos (or character) of the physician, clinical habitus revealed in physician know-how, encountering the patient with attentiveness, modes of reasoning amidst complexity, and embodied perceptions (such as intuitions or gut feeling). The findings open a discussion about the contingent nature of clinical situations, a hermeneutic mode of clinical thinking, tacit dimensions of being and doing in clinical practice, the centrality of caring relations with patients, and the elusive quality of some aspects of practice. This study deepens understandings of the nature of phronesis within clinical settings and proposes 'Clinical phronesis' as a descriptor for its appearance and role in the daily practice of (exemplary) physicians.

箴言通常被描述为适应日常生活的 "实用智慧"。"实践智慧 "使人们能够判断在某种情况下什么是利害攸关的,以及需要采取什么手段才能取得好的结果。在医学中,人们往往要求phronesis来处理伦理问题,并对作为科学知识的直接工具性应用的临床实践提出批评。然而,对 "相思 "的实证研究却很少,包括在医学中的研究。本研究采用诠释学和现象学方法,探讨了 "相性 "如何体现在 11 位模范医生的临床实践故事中。研究结果突出了五大主题:医生的职业道德(或性格)、医生诀窍中揭示的临床习惯、用心接触病人、复杂性中的推理模式以及体现性知觉(如直觉或直觉)。研究结果引发了关于临床情况的偶然性、临床思维的诠释学模式、临床实践中 "存在 "和 "行动 "的隐性维度、与患者之间关爱关系的中心地位以及实践中某些方面难以捉摸的质量等问题的讨论。本研究加深了对临床环境中 "phronesis "性质的理解,并提出了 "临床phronesis "这一描述,以说明其在(模范)医生日常实践中的表现和作用。
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引用次数: 0
A critical view on using "life not worth living" in the bioethics of assisted reproduction. 在辅助生殖的生命伦理学中使用 "不值得活下去的生命 "的批判性观点。
IF 2.1 2区 哲学 Q1 ETHICS Pub Date : 2024-06-01 Epub Date: 2024-02-16 DOI: 10.1007/s11019-023-10191-7
Agnes Elisabeth Kandlbinder

This paper critically engages with how life not worth living (LNWL) and cognate concepts are used in the field of beginning-of-life bioethics as the basis of arguments for morally requiring the application of preimplantation genetic diagnosis (PGD) and/or germline genome editing (GGE). It is argued that an objective conceptualization of LNWL is largely too unreliable in beginning-of-life cases for deriving decisive normative reasons that would constitute a moral duty on the part of intending parents. Subjective frameworks are found to be more suitable to determine LNWL, but they are not accessible in beginning-of-life cases because there is no subject yet. Conceptual and sociopolitical problems are additionally pointed out regarding the common usage of clear case exemplars. The paper concludes that a moral requirement for the usage of PGD and GGE cannot be derived from the conceptual base of LNWL, as strong reasons that can be reliably determined are required to limit reproductive freedom on moral grounds. Educated predictions on prospective well-being might still be useful regarding the determination of moral permissibility of PGD and/or GGE. It is suggested that due to the high significance of subjective experience in the normativity of beginning-of-life bioethics, the discipline is called to more actively realize the inclusion of people with disabilities. This regards for instance research design, citation practices, and language choices to increase the accessibility of societal debates on the reproductive ethics of genetic technologies.

本文批判性地探讨了生命之初生命伦理学领域如何将 "不值得活下去"(LNWL)及相关概念用作道德要求应用胚胎植入前遗传学诊断(PGD)和/或种系基因组编辑(GGE)的论据基础。有观点认为,在生命之初的案例中,客观的 LNWL 概念在很大程度上并不可靠,无法得出决定性的规范理由,从而构成有意为人父母者的道德责任。主观框架被认为更适于确定无法律约束力原则,但在生命之初的案例中却无法使用,因为还没有主体。此外,本文还指出了在普遍使用明确的案例范例方面存在的概念和社会政治问题。本文的结论是,不能从无法律约束力的概念基础中推导出使用 PGD 和 GGE 的道德要求,因为以道德为由限制生育自由需要有可以可靠确定的强有力的理由。在确定 PGD 和/或 GGE 的道德允许性时,对未来福祉进行有教育意义的预测可能仍然有用。我们建议,由于主观经验在生命之初生命伦理学的规范性中具有重要意义,该学科应更 积极地实现对残疾人的包容。这涉及到研究设计、引用实践和语言选择等方面,以提高社会对遗传技术生殖伦理辩论的可及性。
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引用次数: 0
The Ethical Obligation for Research During Public Health Emergencies: Insights From the COVID-19 Pandemic. 公共卫生突发事件期间的研究伦理义务:COVID-19 大流行的启示。
IF 2.3 2区 哲学 Q1 ETHICS Pub Date : 2024-03-01 Epub Date: 2023-12-28 DOI: 10.1007/s11019-023-10184-6
Mariana Barosa, Euzebiusz Jamrozik, Vinay Prasad

In times of crises, public health leaders may claim that trials of public health interventions are unethical. One reason for this claim can be that equipoise-i.e. a situation of uncertainty and/or disagreement among experts about the evidence regarding an intervention-has been disturbed by a change of collective expert views. Some might claim that equipoise is disturbed if the majority of experts believe that emergency public health interventions are likely to be more beneficial than harmful. However, such beliefs are not always justified: where high quality research has not been conducted, there is often considerable residual uncertainty about whether interventions offer net benefits. In this essay we argue that high-quality research, namely by means of well-designed randomized trials, is ethically obligatory before, during, and after implementing policies in public health emergencies (PHEs). We contend that this standard applies to both pharmaceutical and non-pharmaceutical interventions, and we elaborate an account of equipoise that captures key features of debates in the recent pandemic. We build our case by analyzing research strategies employed during the COVID-19 pandemic regarding drugs, vaccines, and non-pharmaceutical interventions; and by providing responses to possible objections. Finally, we propose a public health policy reform: whenever a policy implemented during a PHE is not grounded in high-quality evidence that expected benefits outweigh harms, there should be a planned approach to generate high-quality evidence, with review of emerging data at preset time points. These preset timepoints guarantee that policymakers pause to review emerging evidence and consider ceasing ineffective or even harmful policies, thereby improving transparency and accountability, as well as permitting the redirection of resources to more effective or beneficial interventions.

在危机时刻,公共卫生领导人可能会声称,对公共卫生干预措施进行试验是不道德的。出现这种说法的一个原因可能是,专家集体观点的改变扰乱了平衡状态,即专家对某项干预措施的证据存在不确定性和/或分歧。有些人可能会说,如果大多数专家认为紧急公共卫生干预措施可能利大于弊,那么这种平衡状态就会受到干扰。然而,这种想法并不总是合理的:在没有进行高质量研究的情况下,干预措施是否能带来净效益往往存在相当大的不确定性。在这篇文章中,我们认为,在突发公共卫生事件(PHEs)中,无论是在政策实施之前、期间还是之后,都必须开展高质量的研究,即通过精心设计的随机试验进行研究。我们认为,这一标准既适用于药物干预,也适用于非药物干预,并详细阐述了 "等价交换 "的概念,该概念捕捉到了近期大流行病辩论的关键特征。我们通过分析 COVID-19 大流行期间采用的有关药物、疫苗和非药物干预措施的研究策略,并对可能的反对意见做出回应,从而建立我们的论点。最后,我们提出了一项公共卫生政策改革建议:只要在公共卫生紧急事件期间实施的政策没有高质量的证据证明预期的益处大于危害,就应该有计划地生成高质量的证据,并在预设的时间点对新出现的数据进行审查。这些预设的时间点能保证决策者停下来审查新出现的证据,并考虑停止无效甚至有害的政策,从而提高透明度和问责制,并允许将资源转用于更有效或更有益的干预措施。
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引用次数: 0
Emerging perspectives in the shared decision making debate. 共同决策辩论中的新观点。
IF 2.1 2区 哲学 Q1 ETHICS Pub Date : 2024-03-01 DOI: 10.1007/s11019-024-10196-w
Bert Gordijn, Henk Ten Have
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引用次数: 0
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Medicine Health Care and Philosophy
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