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Democratic Justifications for Patient Public Involvement and Engagement in Health Research: An Exploration of the Theoretical Debates and Practical Challenges. 病人公众参与和参与健康研究的民主理由:理论辩论和实践挑战的探索。
IF 1.6 3区 哲学 Q3 ETHICS Pub Date : 2023-06-20 DOI: 10.1093/jmp/jhad024
Lucy Frith

The literature on patient public involvement and engagement (PPIE) in health research has grown significantly in the last decade, with a diverse range of definitions and topologies promulgated. This has led to disputes over what the central functions and purpose of PPIE in health research is, and this in turn makes it difficult to assess and evaluate PPIE in practice. This paper argues that the most important function of PPIE is the attempt to make health research more democratic. Bringing this function to the fore and locating PPIE in the wider context of changes in contemporary forms of democratic engagement provides greater conceptual clarity over what PPIE in research should be trying to achieve. Conceptualizing PPIE as a form of democratization has a number of benefits. First, theories of what are appropriate, normatively justifiable and workable criteria for PPIE practices can be developed, and this can provide tools to address the legitimacy and accountability questions that have troubled the PPIE community. Second, this work can be used to form the basis of a research agenda to investigate how PPIE in health research operates, and how it can facilitate and/or improve democratic processes in health research.

在过去的十年中,关于健康研究中患者公众参与和参与(PPIE)的文献有了显著的增长,并颁布了各种各样的定义和拓扑。这导致了关于PPIE在健康研究中的核心功能和目的的争论,这反过来又使在实践中评估和评价PPIE变得困难。本文认为,PPIE最重要的功能是尝试使卫生研究更加民主。将这一功能放在首位,并将PPIE置于当代民主参与形式变化的更广泛背景中,可以更清楚地了解PPIE在研究中应该努力实现的目标。将PPIE概念化为民主化的一种形式有很多好处。首先,对于PPIE实践来说,什么是合适的、规范的、合理的和可行的标准的理论可以被开发出来,这可以为解决困扰PPIE社区的合法性和问责问题提供工具。其次,这项工作可以用来形成研究议程的基础,以调查卫生研究中的PPIE如何运作,以及它如何促进和/或改善卫生研究中的民主进程。
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引用次数: 2
On the Anatomy of Health-related Actions for Which People Could Reasonably be Held Responsible: A Framework. 剖析人们可合理承担责任的与健康有关的行为:一个框架。
IF 1.6 3区 哲学 Q3 ETHICS Pub Date : 2023-06-20 DOI: 10.1093/jmp/jhad025
Kristine Bærøe, Andreas Albertsen, Cornelius Cappelen

Should we let personal responsibility for health-related behavior influence the allocation of healthcare resources? In this paper, we clarify what it means to be responsible for an action. We rely on a crucial conceptual distinction between being responsible and holding someone responsible, and show that even though we might be considered responsible and blameworthy for our health-related actions, there could still be well-justified reasons for not considering it reasonable to hold us responsible by giving us lower priority. We transform these philosophical considerations into analytical use first by assessing the general features of health-related actions and the corresponding healthcare needs. Then, we identify clusters of structural features that even adversely affected people cannot reasonably deny constitute actions for which they should be held responsible. We summarize the results in an analytical framework that can be used by decision-makers when considering personal responsibility for health as a criterion for setting priorities.

我们应该让个人对健康相关行为的责任影响医疗资源的分配吗?在本文中,我们澄清了对某一行为负责的含义。我们依赖于负责和让某人负责之间的关键概念区别,并表明即使我们可能被认为对我们与健康有关的行为负责和应受谴责,仍然有充分的理由认为通过降低我们的优先级来让我们负责是不合理的。我们首先通过评估与健康相关的行动的一般特征和相应的医疗保健需求,将这些哲学上的考虑转化为分析用途。然后,我们确定了即使受到不利影响的人也不能合理地否认构成他们应该负责的行为的结构特征集群。我们在一个分析框架中总结了结果,决策者在考虑将个人健康责任作为确定优先事项的标准时可以使用这个分析框架。
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引用次数: 2
Toward a Hybrid Theory of How to Allocate Health-related Resources. 健康相关资源配置的混合理论研究
IF 1.6 3区 哲学 Q3 ETHICS Pub Date : 2023-06-20 DOI: 10.1093/jmp/jhad022
Anders Herlitz

How should scarce health-related resources be allocated? This paper argues that values that apply to these decisions fail to always fully determine what we should do. Health maximization and allocation-according-to-need are suggested as two values that should be part of a general theory of how to allocate health-related resources. The "small improvement argument" is used to argue that it is implausible that one alternative is always better, worse, or equal to another alternative with respect to these values. Approaches that rely on these values are thus incomplete. To deal with this, it is suggested that we ought to use incomplete theories in a two-step process. Such a process first discards ineligible alternatives, and, second, uses reasons grounded in collective commitments to identify a unique, best alternative in the remaining set.

稀缺的卫生资源应如何分配?本文认为,应用于这些决策的价值观并不能完全决定我们应该做什么。建议将健康最大化和按需分配作为如何分配与健康有关的资源的一般理论的两个价值的一部分。“小改进论证”用于论证在这些值方面,一种选择总是比另一种选择更好、更差或等于另一种选择是不可信的。因此,依赖这些值的方法是不完整的。为了解决这个问题,有人建议我们应该在两步过程中使用不完全理论。这样的过程首先抛弃不合格的替代方案,其次,根据集体承诺的理由,在剩下的一组中确定一个唯一的、最佳的替代方案。
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引用次数: 2
Preclinical Disease or Risk Factor? Alzheimer's Disease as a Case Study of Changing Conceptualizations of Disease. 临床前疾病还是危险因素?阿尔茨海默病:疾病概念变化的个案研究。
IF 1.6 3区 哲学 Q3 ETHICS Pub Date : 2023-06-20 DOI: 10.1093/jmp/jhad009
Maartje H N Schermer

Alzheimer's Disease (AD) provides an excellent case study to investigate emerging conceptions of health, disease, pre-disease, and risk. Two scientific working groups have recently reconceptualized AD and created a new category of asymptomatic biomarker positive persons, who are either said to have preclinical AD, or to be at risk for AD. This article examines how prominent theories of health and disease would classify this condition: healthy or diseased? Next, the notion of being "at risk"-a state somewhere in-between health and disease-is considered from various angles. It is concluded that medical-scientific developments urge us to let go of dichotomous ways of understanding disease, that the notion of "risk," conceptualized as an increased chance of getting a symptomatic disease, might be a useful addition to our conceptual framework, and that we should pay more attention to the practical usefulness and implications of the ways in which we draw lines and define concepts.

阿尔茨海默病(AD)提供了一个很好的案例研究,以调查健康,疾病,疾病前期和风险的新兴概念。两个科学工作组最近重新定义了阿尔茨海默病,并创建了一个新的无症状生物标志物阳性人群类别,这些人要么被认为患有临床前阿尔茨海默病,要么有患阿尔茨海默病的风险。这篇文章探讨了著名的健康和疾病理论是如何对这种状况进行分类的:健康还是患病?其次,“处于危险”的概念——介于健康和疾病之间的某种状态——从不同的角度被考虑。结论是,医学科学的发展促使我们放弃理解疾病的两分法,“风险”的概念被概念化为获得症状性疾病的机会增加,这可能是对我们概念框架的有益补充,我们应该更多地关注我们划线和定义概念的方法的实际用途和含义。
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引用次数: 1
Priority for Organ Donors in the Allocation of Organs: Priority Rules from the Perspective of Equality of Opportunity. 器官分配中的器官捐赠者优先:机会平等视角下的优先规则。
IF 1.6 3区 哲学 Q3 ETHICS Pub Date : 2023-06-20 DOI: 10.1093/jmp/jhad023
Andreas Albertsen

Should priority in the allocation of organs be given to those who have previously donated or declared their willingness to do so? This article examines the Israeli priority rule in light of two prominent critiques of priority rules, pertaining to failure to reciprocate and unfairness. The scope and content of these critiques are interpreted from the perspective of equality of opportunity. Because the Israeli priority rule may be reasonably criticized for unfairness and failing to reward certain behaviors, the article develops an adjusted priority rule, which removes and adjust the elements in the Israeli priority rule deemed problematic. However, such a priority rule is complex to the extent that it may fail to increase donation rates and furthermore introduce new concerns of fairness, as the better off may be better able to navigate the complex adjusted priority rule.

是否应该优先分配器官给那些曾经捐献过器官或表示愿意捐献器官的人?本文考察了以色列优先规则的两个突出的批评优先规则,有关失败的回报和不公平。这些批评的范围和内容是从机会平等的角度来解释的。由于以色列优先规则可能因不公平和未能奖励某些行为而受到合理的批评,因此本文开发了一个调整的优先规则,该规则删除并调整了以色列优先规则中被认为有问题的元素。然而,这样的优先规则是复杂的,以至于它可能无法提高捐赠率,并进一步引入新的公平问题,因为富人可能更能驾驭复杂的调整后的优先规则。
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引用次数: 2
Prevention of Disease and the Absent Body: A Phenomenological Approach to Periodontitis. 疾病预防与缺失体:牙周炎的现象学研究。
IF 1.6 3区 哲学 Q3 ETHICS Pub Date : 2023-05-16 DOI: 10.1093/jmp/jhad015
Dylan Rakhra, Māra Grīnfelde
A large part of the contemporary phenomenology of medicine has been devoted to accounts of health and illness, arguing that they contribute to the improvement of health care. Less focus has been paid to the issue of prevention of disease and the associated difficulty of adhering to health-promoting behaviours, which is arguably of equal importance. This article offers a phenomenological account of this disease prevention, focusing on how we-as embodied beings-engage with health-promoting behaviours. It specifically considers how we engage with oral hygiene regimens to prevent periodontitis and why we are not good at it. The article suggests that poor adherence to health-promoting behaviours can be explained with reference to the concept of the absent body, because prevention of disease is generally concerned with pre-symptomatic illness experience. The final section contains a discussion of some strategies for the improvement of disease prevention based on this viewpoint.
当代医学现象学的很大一部分都致力于健康和疾病的描述,认为它们有助于改善医疗保健。对预防疾病问题以及坚持促进健康行为的相关困难给予的关注较少,而这一点可以说同样重要。这篇文章提供了一种疾病预防的现象学解释,重点关注我们作为具身生物如何参与促进健康的行为。它特别考虑了我们如何参与口腔卫生方案,以防止牙周炎和为什么我们不擅长它。这篇文章认为,缺乏对促进健康行为的坚持可以参照缺席身体的概念来解释,因为疾病的预防通常与症状前的疾病经历有关。最后一节根据这一观点讨论了改善疾病预防的一些策略。
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引用次数: 0
Anti-abortionist Action Theory and the Asymmetry between Spontaneous and Induced Abortions. 反堕胎行动理论与自然流产与人工流产的不对称。
IF 1.6 3区 哲学 Q3 ETHICS Pub Date : 2023-05-16 DOI: 10.1093/jmp/jhad011
Matthew Lee Anderson

This essay defends the asymmetry between the badness of spontaneous and induced abortions in order to explain why anti-abortionists prioritize stopping induced abortions over preventing spontaneous abortions. Specifically, it argues (1) the distinction between killing and letting-die is of more limited use in explaining the asymmetry than has sometimes been presumed, and (2) that accounting for intentions in moral agency does not render performances morally inert. Instead, anti-abortionists adopt a pluralist, nonreductive account of moral analysis which is situated against a backdrop that sees the limits of our ability to control the process of fertility as themselves valuable. Although this view is complex, the paper concludes by arguing that it has the advantage of explaining features of the anti-abortion outlook that have sometimes been overlooked. First, it accounts for why the pre-Roe regime of abortion restrictions primarily imposed penalties on doctors who induced abortions rather than the women who seek them. Second, it explains why the advent of ectogestation will not prompt anti-abortionists to compromise on 'disconnect abortions,' which putatively let the embryo die by extracting it from the mother's womb.

这篇文章为自然流产和人工流产的害处之间的不对称辩护,以解释为什么反堕胎者优先考虑停止人工流产而不是预防自然流产。具体来说,它认为(1)杀戮和听任死亡之间的区别在解释不对称性方面的作用比有时假设的要有限,(2)解释道德行为中的意图并不会使行为在道德上变得惰性。相反,反堕胎者采用了一种多元的、非简化的道德分析,这种分析的背景是,我们控制生育过程的能力的局限性本身就是有价值的。尽管这一观点很复杂,但论文的结论是,它具有解释反堕胎观点中有时被忽视的特征的优势。首先,它解释了为什么在roe案件之前的堕胎限制制度主要是对引产医生而不是寻求堕胎的妇女进行惩罚。其次,它解释了为什么体外受精的出现不会促使反堕胎者在“断开堕胎”上妥协,“断开堕胎”是指通过将胚胎从母亲的子宫中取出来而导致胚胎死亡。
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引用次数: 1
Miscarriage, Abortion, and Disease. 流产、流产和疾病。
IF 1.6 3区 哲学 Q3 ETHICS Pub Date : 2023-05-16 DOI: 10.1093/jmp/jhad012
Tom Waters

The frequency of death from miscarriage is very high, greater than the number of deaths from induced abortion or major diseases. Berg (2017 , Philosophical Studies 174:1217-26) argues that, given this, those who contend that personhood begins at conception (PAC) are obliged to reorient their resources accordingly-towards stopping miscarriage, in preference to stopping abortion or diseases. This argument depends on there being a basic moral similarity between these deaths. I argue that, for those that hold to PAC, there are good reasons to think that there is no such similarity. There is a morally relevant difference between preventing killing and letting die, giving PAC supporters reasons to prioritize reducing abortion over reducing miscarriage. And the time-relative interest account provides a morally relevant difference in the badness of death of miscarriages and deaths of born adults, justifying attempts to combat major diseases over attempts to combat miscarriage. I consider recent developments in the literature and contend that these new arguments are unsuccessful in establishing moral similarities between deaths from miscarriage and abortion, and deaths from miscarriage and disease.

因流产死亡的频率非常高,超过了因人工流产或重大疾病死亡的人数。Berg (2017, Philosophical Studies 174:1217-26)认为,鉴于此,那些主张人格始于受孕(PAC)的人有义务相应地重新调整他们的资源,以阻止流产,而不是阻止堕胎或疾病。这一论点基于这些死亡之间存在基本的道德相似性。我认为,对于那些坚持PAC的人来说,有很好的理由认为没有这种相似性。在道德上,防止杀戮和放任死亡是有区别的,这让政治行动委员会的支持者有理由优先考虑减少堕胎,而不是减少流产。时间相对利益解释提供了一种道德上的差异在流产死亡和出生成人死亡的坏处上,证明了对抗重大疾病的努力比对抗流产的努力更有道理。我考虑了最近文献的发展,并认为这些新的论点在建立流产和堕胎死亡以及流产和疾病死亡之间的道德相似性方面是失败的。
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引用次数: 1
Embryo Loss and Moral Status. 胚胎丧失与道德地位。
IF 1.6 3区 哲学 Q3 ETHICS Pub Date : 2023-05-16 DOI: 10.1093/jmp/jhad010
James Delaney

There is a significant debate over the moral status of human embryos. This debate has important implications for practices like abortion and IVF. Some argue that embryos have the same moral status as infants, children, and adults. However, critics claim that the frequency of pregnancy loss/miscarriage/spontaneous abortion shows a moral inconsistency in this view. One line of criticism is that those who know the facts about pregnancy loss and nevertheless attempt to conceive children are willing to sacrifice embryos lost for the healthy children they ultimately have. I respond to this criticism and argue that on the most plausible accounts of well-being, these embryos are not made worse off and thus not "sacrifices." I then make some more general remarks about what people's typical views about pregnancy loss show about their views toward the moral status of embryos.

关于人类胚胎的道德地位存在着重大的争论。这场辩论对堕胎和体外受精等实践具有重要意义。一些人认为胚胎与婴儿、儿童和成人具有同样的道德地位。然而,批评者声称,怀孕失败/流产/自然流产的频率显示了这种观点在道德上的不一致。一种批评是,那些知道怀孕失败的事实,但仍然试图怀孕的人愿意牺牲失去的胚胎,以换取他们最终拥有的健康孩子。我对这种批评做出了回应,并辩称,在最合理的幸福解释中,这些胚胎并没有变得更糟,因此不是“牺牲”。然后,我就人们对流产的典型看法以及他们对胚胎道德地位的看法做了一些一般性的评论。
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引用次数: 1
The Scourges: Why Abortion Is Even More Morally Serious than Miscarriage. 《祸患:为什么堕胎在道德上比流产更严重》
IF 1.6 3区 哲学 Q3 ETHICS Pub Date : 2023-05-16 DOI: 10.1093/jmp/jhad014
Calum Miller

Several recent papers have suggested that the pro-life view entails a radical, implausible thesis: that miscarriage is the biggest public health crisis in the history of our species and requires radical diversion of funds to combat. In this paper, I clarify the extent of the problem, showing that the number of miscarriages about which we can do anything morally significant is plausibly much lower than previously thought, then describing some of the work already being done on this topic. I then briefly survey a range of reasons why abortion might be thought more serious and more worthy of prevention than miscarriage. Finally, I lay out my central argument: that reflection on the wrongness of killing reveals that the norms for ending life and failing to save life are different, in such a way that could justify the prioritization of anti-abortion advocacy over anti-miscarriage efforts. Such an account can also respond to similar problems posed to the pro-lifer, such as the question of whom to save in a "burning lab" type scenario.

最近的几篇论文表明,反堕胎观点包含了一个激进的、令人难以置信的论点:流产是人类历史上最大的公共卫生危机,需要彻底转移资金来应对。在本文中,我澄清了这个问题的严重程度,表明我们可以做任何具有道德意义的事情的流产数量似乎比之前想象的要低得多,然后描述了一些已经在这个主题上完成的工作。然后,我简要地调查了一系列原因,为什么堕胎可能被认为比流产更严重,更值得预防。最后,我列出了我的中心论点:对杀戮的错误的反思揭示了结束生命和未能挽救生命的规范是不同的,在这种情况下,可以证明反堕胎倡导优先于反流产努力的合理性。这样的描述也可以回应反堕胎者面临的类似问题,比如在“燃烧的实验室”类型的场景中拯救谁的问题。
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引用次数: 2
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Journal of Medicine and Philosophy
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