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Patient autonomy in the era of the sustainability crisis. 可持续发展危机时代的患者自主权。
IF 2.3 2区 哲学 Q1 ETHICS Pub Date : 2024-09-01 Epub Date: 2024-06-08 DOI: 10.1007/s11019-024-10214-x
Szilárd Dávid Kovács

In the realm of medical ethics, the foundational principle of respecting patient autonomy holds significant importance, often emerging as a central concern in numerous ethically complex cases, as authorizing medical assistance in dying or healthy limb amputation on patient request. Even though advocates for either alternative regularly utilize prima facie principles to resolve ethical dilemmas, the interplay between these principles is often the core of the theoretical frameworks. As the ramifications of the sustainability crisis become increasingly evident, there is a growing need to integrate awareness for sustainability into medical decision-making, thus reintroducing potential conflict with patient autonomy. The contention of this study is that the ethical standards established in the 20th century may not adequately address the challenges that have arisen in the 21st century. The author suggests an advanced perception of patient autonomy that prioritizes fostering patients' knowledge, self-awareness, and sense of responsibility, going beyond a sole focus on their intrinsic values. Empowering patients could serve as a tool to align patient autonomy, beneficence, and the aim to reduce resource consumption.

在医学伦理学领域,尊重病人自主权这一基本原则具有重要意义,在许多复杂的伦理案件中,它往往成为一个核心问题,如应病人要求授权进行临终医疗救助或健康肢体截肢。尽管任何一种选择的倡导者都经常利用表面原则来解决伦理困境,但这些原则之间的相互作用往往是理论框架的核心。随着可持续发展危机的影响日益明显,人们越来越需要将可持续发展意识融入医疗决策中,从而重新引入与病人自主权的潜在冲突。本研究的论点是,20 世纪确立的伦理标准可能不足以应对 21 世纪出现的挑战。作者提出了一种先进的病人自主权观念,这种观念把培养病人的知识、自我意识和责任感放在首位,而不仅仅关注他们的内在价值。赋予病人权力可以作为一种工具,使病人自主权、惠益原则和减少资源消耗的目标保持一致。
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引用次数: 0
The hunger strike in prison: bioethical and medico-legal insights arising from a recent opinion of the Italian national bioethics committee. 监狱中的绝食:意大利国家生物伦理学委员会最近提出的一项意见在生物伦理学和医学法律方面的启示。
IF 2.3 2区 哲学 Q1 ETHICS Pub Date : 2024-09-01 Epub Date: 2024-06-12 DOI: 10.1007/s11019-024-10215-w
Francesco De Micco, Vittoradolfo Tambone, Rosa De Vito, Mariano Cingolani, Roberto Scendoni

This contribution addresses some bioethical and medico-legal issues of the opinion formulated by the Italian National Bioethics Committee (CNB) in response to the dilemma between the State's duty to protect the life and health of the prisoner entrusted to its care and the prisoner's right to exercise his freedom of expression. The prisoner hunger strike is a form of protest frequently encountered in prison and it is a form of communication but also a language used by the prisoner in order to provoke changes in the prison condition. There are no rules in the prison regulations, nor in the laws governing the legal status of prisoners, that allow the conscious will of the capable and informed subject to be opposed and forced nutrition to be carried out. However, this can in no manner make therapeutic abandonment legitimate: the medical doctor should promote every action to support the patient. In the recent opinion formulated by the CNB it was remarked how self-determination is a central concept in human rights and refers to an individual's ability to make autonomous and free decisions about his or her life and body.

这篇论文探讨了意大利国家生物伦理委员会(CNB)针对国家保护受其监护的囚犯的生命和健康的义务与囚犯行使其表达自由的权利之间的两难境地所提出的意见中的一些生物伦理和医学法律问题。囚犯绝食是监狱中经常遇到的一种抗议形式,是一种交流方式,也是囚犯为促使监狱条件发生变化而使用的一种语言。监狱条例和有关囚犯法律地位的法律中都没有规定允许反对有能力和知情的主体的自觉意愿和强制营养。然而,这并不能使放弃治疗合法化:医生应采取一切行动支持病人。全国委员会在最近提出的意见中指出,自决是人权的核心概念,是指个人对自己的生活和身体做出自主和自由决定的能力。
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引用次数: 0
An "ethics of strangers"? On knowing the patient in clinical ethics. 陌生人伦理"?论临床伦理学中的 "了解病人"。
IF 2.3 2区 哲学 Q1 ETHICS Pub Date : 2024-09-01 Epub Date: 2024-06-08 DOI: 10.1007/s11019-024-10213-y
Joar Björk, Anna Hirsch

The shape and function of ethical imperatives may vary if the context is an interaction between strangers, or those who are well acquainted. This idea, taken up from Stephen Toulmin's distinction between an "ethics of strangers" and an "ethics of intimacy", can be applied to encounters in healthcare. There are situations where healthcare personnel (HCP) know their patients (corresponding to an "ethics of intimacy") and situations where HCP do not know their patients (corresponding to "an ethics of strangers"). Does it make a difference for normative imperatives that follow from central concepts and principles in medical ethics whether HCP know their patients or not? In our view, this question has not yet been answered satisfactorily. Once we have clarified what is meant by "knowing the patient", we will show that the distinction is particularly relevant with regard to some thorny questions of autonomy in healthcare (e.g., regarding advance directives or paternalism in the name of autonomy), whereas the differences with regard to imperatives following from the principles of justice and beneficence seem to be smaller. We provide a detailed argument for why knowing the patient is ethically valuable in encounters in healthcare. Consequently, healthcare systems should provide fertile ground for HCP to get to know their patients, and structures that foster therapeutic continuity. For this to succeed, a number of questions still need to be clarified, which is an important task for medical ethics.

如果是陌生人之间的互动,或者是熟人之间的互动,那么伦理要求的形式和功能可能会有所不同。斯蒂芬-图尔敏(Stephen Toulmin)对 "陌生人伦理 "和 "亲密关系伦理 "进行了区分,这一观点也适用于医疗保健领域。在某些情况下,医护人员(HCP)了解他们的病人(相当于 "亲密伦理"),而在某些情况下,医护人员不了解他们的病人(相当于 "陌生人伦理")。医护人员是否认识病人,对于医学伦理的核心概念和原则所产生的规范性要求是否有区别?我们认为,这个问题尚未得到令人满意的回答。一旦我们弄清了 "了解病人 "的含义,我们就会发现,这种区别与医疗保健中一些棘手的自主权问题(例如,关于预先指示或以自主权为名的家长制)尤其相关,而与正义和恩惠原则的要求相比,区别似乎较小。我们详细论证了为什么了解病人在医疗保健过程中具有伦理价值。因此,医疗保健系统应为医护人员提供了解病人的沃土,以及促进治疗连续性的结构。要做到这一点,仍有许多问题需要澄清,这是医学伦理学的一项重要任务。
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引用次数: 0
Toward a new clinical pragmatism: method in clinical ethics consultation. 迈向新的临床实用主义:临床伦理咨询的方法。
IF 2.3 2区 哲学 Q1 ETHICS Pub Date : 2024-09-01 Epub Date: 2024-07-15 DOI: 10.1007/s11019-024-10219-6
Ryan Marshall Felder

In this paper, I leverage the pragmatist tradition in philosophy, the collective wisdom of scholarship in clinical ethics consultation, and earlier attempts to apply pragmatism in clinical ethics to develop a new vision of clinical ethics practice called New Clinical Pragmatism. It argues that clinical ethics methodology, from the New Clinical Pragmatist's perspective, amounts to the recommendation that consultants should customize a methodological approach, drawing on the various available methods, depending on the demands of the specific case, and should avoid attempts to identify a 'true' methodology but to the incoherence and inevitable failure of those attempts. I argue that pragmatism's emphasis on practical wisdom and experimentation allow the New Clinical Pragmatist to do this while avoiding irrationality in choosing methods. I discuss how the New Clinical Pragmatist gives a unique, constructive perspective on key aspects of clinical ethics consultation such as the choice of common morality vs. internal morality of medicine approaches, process standards, bioethics mediation, and narrative ethics, and suggest how New Clinical Pragmatism's relaxed approach to choice of methodology encourages consultants to balance attention to the particulars of the case with knowledge of what the many insightful scholars of clinical ethics methodology have found useful in the past. I also argue that New Clinical Pragmatism is consistent with efforts to professionalize clinical ethics consultation.

在本文中,我利用哲学中的实用主义传统、临床伦理学咨询学术研究的集体智慧,以及早先将实用主义应用于临床伦理学的尝试,提出了一种名为 "新临床实用主义"(New Clinical Pragmatism)的临床伦理学实践新观点。它认为,从新临床实用主义的角度来看,临床伦理学方法论等同于建议咨询师应根据具体案例的需求,借鉴各种可用的方法,定制一种方法论方法,并应避免试图确定一种 "真正的 "方法论,而是避免这些尝试的不连贯和不可避免的失败。我认为,实用主义强调实践智慧和实验,这使新临床实用主义者能够做到这一点,同时避免在选择方法时的非理性。我论述了新临床实用主义如何在临床伦理学咨询的关键环节上,如共同道德与医学内部道德方法的选择、过程标准、生命伦理学调解和叙事伦理学等方面,提出了独特的建设性观点,并建议新临床实用主义在方法论选择上的宽松态度如何鼓励咨询师在关注案例的特殊性与了解临床伦理学方法论的众多有见地的学者在过去发现的有用方法之间取得平衡。我还认为,新临床实用主义与临床伦理学咨询专业化的努力是一致的。
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引用次数: 0
A contextual integrity approach to genomic information: what bioethics can learn from big data ethics. 基因组信息的语境完整性方法:生物伦理学可以从大数据伦理学中学到什么。
IF 2.3 2区 哲学 Q1 ETHICS Pub Date : 2024-09-01 Epub Date: 2024-06-12 DOI: 10.1007/s11019-024-10211-0
Nina F de Groot

Genomic data is generated, processed and analysed at an increasingly rapid pace. This data is not limited to the medical context, but plays an important role in other contexts in society, such as commercial DNA testing, the forensic setting, archaeological research, and genetic surveillance. Genomic information also crosses the borders of these domains, e.g. forensic use of medical genetic information, insurance use of medical genomic information, or research use of commercial genomic data. This paper (1) argues that an informed consent approach for genomic information has limitations in many societal contexts, and (2) seeks to broaden the bioethical debate on genomic information by suggesting an approach that is applicable across multiple societal contexts. I argue that the contextual integrity framework, a theory rooted in information technology and big data ethics, is an effective tool to explore ethical challenges that arise from genomic information within a variety of different contexts. Rather than focusing on individual control over information, the contextual integrity approach holds that information should be shared and protected according to the norms that govern certain distinct social contexts. Several advantages of this contextual integrity approach will be discussed. The paper concludes that the contextual integrity framework helps to articulate and address a broad spectrum of ethical, social, and political factors in a variety of different societal contexts, while giving consideration to the interests of individuals, groups, and society at large.

基因组数据的生成、处理和分析速度越来越快。这些数据不仅限于医疗领域,在社会的其他领域也发挥着重要作用,如商业 DNA 检测、法医环境、考古研究和基因监测。基因组信息还跨越了这些领域的边界,如法医使用医疗基因组信息、保险使用医疗基因组信息或研究使用商业基因组数据。本文(1)认为基因组信息的知情同意方法在许多社会环境中都有局限性,(2)试图通过提出一种适用于多种社会环境的方法来扩大关于基因组信息的生物伦理辩论。我认为,语境完整性框架是一种植根于信息技术和大数据伦理的理论,是探讨基因组信息在各种不同语境中产生的伦理挑战的有效工具。语境完整性方法并不关注个人对信息的控制,而是认为信息应根据特定社会语境的规范进行共享和保护。本文将讨论这种情境完整性方法的几个优点。本文的结论是,情境完整性框架有助于阐明和处理各种不同社会背景下的道德、社会和政治因素,同时考虑到个人、群体和整个社会的利益。
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引用次数: 0
Navigating the uncommon: challenges in applying evidence-based medicine to rare diseases and the prospects of artificial intelligence solutions. 驾驭罕见病:将循证医学应用于罕见病的挑战和人工智能解决方案的前景。
IF 2.3 2区 哲学 Q1 ETHICS Pub Date : 2024-09-01 Epub Date: 2024-05-09 DOI: 10.1007/s11019-024-10206-x
Olivia Rennie

The study of rare diseases has long been an area of challenge for medical researchers, with agonizingly slow movement towards improved understanding of pathophysiology and treatments compared with more common illnesses. The push towards evidence-based medicine (EBM), which prioritizes certain types of evidence over others, poses a particular issue when mapped onto rare diseases, which may not be feasibly investigated using the methodologies endorsed by EBM, due to a number of constraints. While other trial designs have been suggested to overcome these limitations (with varying success), perhaps the most recent and enthusiastically adopted is the application of artificial intelligence to rare disease data. This paper critically examines the pitfalls of EBM (and its trial design offshoots) as it pertains to rare diseases, exploring the current landscape of AI as a potential solution to these challenges. This discussion is also taken a step further, providing philosophical commentary on the weaknesses and dangers of AI algorithms applied to rare disease research. While not proposing a singular solution, this article does provide a thoughtful reminder that no 'one-size-fits-all' approach exists in the complex world of rare diseases. We must balance cautious optimism with critical evaluation of new research paradigms and technology, while at the same time not neglecting the ever-important aspect of patient values and preferences, which may be challenging to incorporate into computer-driven models.

长期以来,罕见病研究一直是医学研究人员面临挑战的一个领域,与更常见的疾病相比,罕见病在提高对病理生理学和治疗方法的认识方面进展缓慢,令人痛苦。循证医学(EBM)将某些类型的证据置于其他证据之上,这对罕见病的研究提出了一个特殊的问题,由于一些限制因素,使用 EBM 认可的方法对罕见病进行研究可能并不可行。虽然有人提出了其他试验设计来克服这些局限性(成功率不一),但最近被热烈采用的可能是将人工智能应用于罕见病数据。本文批判性地研究了 EBM(及其试验设计分支)在罕见病方面的缺陷,探讨了人工智能作为解决这些挑战的潜在方案的现状。此外,本文还进一步对应用于罕见病研究的人工智能算法的弱点和危险进行了哲学评述。这篇文章虽然没有提出单一的解决方案,但却深思熟虑地提醒我们,在复杂的罕见病世界中不存在 "放之四海而皆准 "的方法。我们必须在谨慎乐观与对新研究范例和技术的批判性评估之间保持平衡,同时也不能忽视患者价值观和偏好这个永远重要的方面,将其纳入计算机驱动的模型可能具有挑战性。
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引用次数: 0
A critical and systematic literature review of epistemic justice applied to healthcare: recommendations for a patient partnership approach. 对应用于医疗保健的认识论正义的批判性和系统性文献综述:关于患者伙伴关系方法的建议。
IF 2.3 2区 哲学 Q1 ETHICS Pub Date : 2024-09-01 Epub Date: 2024-06-04 DOI: 10.1007/s11019-024-10210-1
Catherine Isadora Côté

Invalidation from healthcare practitioners is an experience shared by many patients, especially those marginalized or living with contested conditions (e.g., chronic pain, fibromyalgia, etc.). Invalidation can include not taking someone's testimony seriously, imposing one's thoughts, discrediting someone's emotions, or not perceiving someone's testimony as equal and competent. Epistemic injustices, that is, the disqualification of a person as a knower, are a form of invalidation. Epistemic injustices have been used as a theoretical framework to understand invalidation that occurs in the patient-healthcare provider relationship. However, to date, the different recommendations to achieve epistemic justice have not been listed, analyzed, nor compared yet. This paper aims at better understanding the state of the literature and to critically review possible avenues to achieve epistemic justice in healthcare. A systematic and critical review of the existing literature on epistemic justice was conducted. The search in four databases identified 629 articles, from which 35 were included in the review. Strategies to promote epistemic justice that can be applied to healthcare are mapped in the literature and sorted in six different approaches to epistemic justice, including virtuous, structural, narrative, cognitive, and partnership approaches, as well as resistance strategies. These strategies are critically appraised. A patient partnership approach based on the Montreal Model, implemented at all levels of healthcare systems, seems promising to promote epistemic justice in healthcare.

许多患者,尤其是那些被边缘化或患有有争议病症(如慢性疼痛、纤维肌痛等)的患者,都有过被医护人员否定的经历。无效包括不认真对待某人的证词、将自己的想法强加于人、诋毁某人的情感,或不认为某人的证词是平等和合格的。认识论上的不公正,即剥夺某人作为认识者的资格,是无效的一种形式。认识论上的不公正已被用作一种理论框架来理解发生在患者与医疗服务提供者关系中的无效性。然而,迄今为止,还没有人列出、分析或比较过实现认识论公正的不同建议。本文旨在更好地了解文献现状,并批判性地回顾在医疗保健中实现认识论公正的可能途径。本文对有关认识公正的现有文献进行了系统性和批判性的回顾。在四个数据库中搜索到了 629 篇文章,其中 35 篇被纳入综述。文献中描绘了可应用于医疗保健领域的促进认识公正的策略,并将其分类为六种不同的认识公正方法,包括良性方法、结构方法、叙事方法、认知方法、合作方法以及抵制策略。对这些策略进行了批判性评估。以蒙特利尔模式为基础的患者伙伴关系方法在医疗保健系统的各个层面实施,似乎有望促进医疗保健中的认识公正。
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引用次数: 0
Learning from disability studies to introduce the role of the individual to naturalistic accounts of disease. 向残疾研究学习,在疾病的自然描述中引入个人的作用。
IF 2.3 2区 哲学 Q1 ETHICS Pub Date : 2024-09-01 Epub Date: 2024-07-03 DOI: 10.1007/s11019-024-10216-9
Ozan Altan Altinok

Disability studies have been successfully focusing on individuals' lived experiences, the personalization of goals, and the constitution of the individual in defining disease and restructuring public understandings of disability. Although they had a strong influence in the policy making and medical modeling of disease, their framework has not been translated to traditional naturalistic accounts of disease. I will argue that, using new developments in evolutionary biology (Extended Evolutionary Synthesis [EES] about questions of proper function) and behavioral ecology (Niche conformance and construction about the questions of reference classes in biostatistics accounts), the main elements of the framework of disability studies can be used to represent life histories at the conceptual level of the two main "non-normative" accounts of disease. I chose these accounts since they are related to medicine in a more descriptive way. The success of the practical aspects of disability studies this way will be communicated without causing injustice to the individual since they will represent the individuality of the patient in two main naturalistic accounts of disease: the biostatistical account and the evolutionary functional account. Although most accounts criticizing the concept of disease as value-laden do not supply a positive element, disability studies can supply a good point for descriptive extension of the concept through inclusion of epistemic agency.

残疾研究在定义疾病和重构公众对残疾的理解方面,成功地关注了个人的生活经历、目标的个性化和个人的构成。尽管这些研究对疾病的政策制定和医学模型有很大的影响,但其框架并没有转化为对疾病的传统自然主义描述。我将论证,利用进化生物学(关于适当功能问题的扩展进化综合[EES])和行为生态学(关于生物统计学描述中参考类问题的龛位一致性和构建)的新发展,残疾研究框架的主要元素可用于在两个主要的疾病 "非规范 "描述的概念层面上表现生命史。我之所以选择这两种说法,是因为它们以一种更具描述性的方式与医学相关。通过这种方式,残疾研究在实践方面取得的成功将得到传播,而不会对个人造成不公,因为它们将在两种主要的自然主义疾病论述中代表病人的个性:生物统计论述和进化功能论述。尽管大多数批评疾病概念带有价值色彩的论述都没有提供积极的因素,但残疾研究可以通过纳入认识论机构,为描述性扩展疾病概念提供一个良好的切入点。
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引用次数: 0
Pain and temporality: a merleau-pontyian approach. 疼痛与时间性:梅洛-庞蒂的方法。
IF 2.3 2区 哲学 Q1 ETHICS Pub Date : 2024-09-01 Epub Date: 2024-05-18 DOI: 10.1007/s11019-024-10205-y
Judith N Wagner

Chronic pain is a common disorder with enormous sociomedical importance. A major part of primary and secondary costs of illness is caused by the various pain syndromes. Nociception - the sensory perception of a painful stimulus - is a complex process relying on an intricate system of anatomical, neurophysiological and biochemical networks. This applies even more so to pain - the state of experiencing a nociceptive event, of interpreting it in terms of meaning for the affected individual and of suffering a range of emotions it elicits. This intricacy renders it obvious, that the empirical medical sciences alone cannot explain all aspects of pain. Hence, it has also become a focus of phenomenological research. One aspect of these investigations is the interaction of pain and the perception of the lived body's spatiality. The focus of this article will build on these concepts to develop a construct of the alteration of temporality caused by chronic pain and the effects this spells out for the affected subject. To this end, I will primarily draw on Merleau-Ponty's ideas of the lived body as well as on theories of enactivism and embodiment. I will also point out parallels to neuroscientific data, thereby demonstrating the proximity of phenomenology and neuroscience. A possible partial solution to the pain dilemma may be derived from psychology: techniques relying on cognitive behavioural intervention, awareness training, and existential analysis may provide alleviation to patients suffering from chronic pain.

慢性疼痛是一种常见疾病,具有重要的社会医学意义。各种疼痛综合症造成的原发性和继发性疾病费用占主要部分。痛觉--对疼痛刺激的感觉--是一个复杂的过程,依赖于解剖学、神经生理学和生物化学网络的复杂系统。疼痛更是如此--经历痛觉事件的状态、从对受影响个体的意义角度对其进行解释以及承受其引发的一系列情绪。这种复杂性显然表明,仅凭经验医学无法解释疼痛的所有方面。因此,疼痛也成为现象学研究的重点。这些研究的一个方面是疼痛与对生活身体空间性的感知之间的相互作用。本文的重点将以这些概念为基础,构建一个由慢性疼痛引起的时间性改变的概念,以及这对受影响主体的影响。为此,我将主要借鉴梅洛-庞蒂(Merleau-Ponty)关于 "活生生的身体"(lived body)的观点,以及 "行为主义"(activism)和 "体现"(embodiment)的理论。我还将指出与神经科学数据的相似之处,从而证明现象学与神经科学的接近性。疼痛困境的部分解决方案可能来自心理学:依靠认知行为干预、意识训练和存在主义分析的技术可以缓解慢性疼痛患者的痛苦。
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引用次数: 0
Epistemic (in)justice, social identity and the Black Box problem in patient care. 病人护理中的认识(不)公正、社会认同和黑匣子问题。
IF 2.1 2区 哲学 Q1 ETHICS Pub Date : 2024-06-01 Epub Date: 2024-02-14 DOI: 10.1007/s11019-024-10194-y
Muneerah Khan, Cornelius Ewuoso

This manuscript draws on the moral norms arising from the nuanced accounts of epistemic (in)justice and social identity in relational autonomy to normatively assess and articulate the ethical problems associated with using AI in patient care in light of the Black Box problem. The article also describes how black-boxed AI may be used within the healthcare system. The manuscript highlights what needs to happen to align AI with the moral norms it draws on. Deeper thinking - from other backgrounds other than decolonial scholarship and relational autonomy - about the impact of AI on the human experience needs to be done to appreciate any other barriers that may exist. Future studies can take up this task.

本手稿借鉴了关系自治中认识论(不)正义和社会认同的细微论述所产生的道德规范,从规范角度评估并阐述了在黑盒问题下将人工智能用于患者护理所带来的伦理问题。文章还介绍了如何在医疗保健系统中使用黑盒人工智能。手稿强调了要使人工智能符合其所借鉴的道德规范所需要做的事情。除了非殖民化学术和关系自治之外,还需要从其他背景深入思考人工智能对人类体验的影响,以了解可能存在的其他障碍。未来的研究可以承担这项任务。
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引用次数: 0
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