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50 Years of advance care planning: what do we call success? 50年的提前护理计划:我们怎么称呼成功?
IF 1.6 Q1 Arts and Humanities Pub Date : 2021-07-01 Epub Date: 2021-05-08 DOI: 10.1007/s40592-021-00127-3
Kerstin Knight

Advance care planning (ACP) is promoted as beneficial practice internationally. This article critically examines different ways of understanding and measuring success in ACP. It has been 50 years since Luis Kutner first published his original idea of the Living Will, which was thought to be a contract between health carers and patients to provide for instructions about treatment choices in cases of mental incapacity. Its purpose was to extend a patient's right to autonomy and protect health carers from charges of wrong-doing. Yet, it can be doubtful whether different types of ACP achieve these goals rather than aiming at secondary gains. My discussion suggests that the current promotion of ACP is not always engaging critically with the original ACP intentions and may even pursue notions of success that may run contrary to respecting autonomy. The risk of this may especially be the case when high participation rates are taken as indicators of success for institutional ACP programs. I further suggest that Kutner's two original aims of protecting patient autonomy and preventing charges of wrong-doing are near impossible to achieve in conjunction, because their simultaneous pursuit fails to acknowledge that patients and carers have opposing needs for reassurance about possible judgment errors. I conclude that the most realistic idea of success of modern ACP is an acknowledgement of the importance of ongoing dialogue about what constitutes appropriate care and a diversity of aims rather than any kind of advance, contractual insurance in the face of controversy.

预先护理计划(ACP)作为有益的实践在国际上得到推广。本文批判性地考察了理解和衡量ACP成功的不同方法。50年前,路易斯·库特纳(Luis Kutner)首次发表了他的“生前遗嘱”(Living Will)的最初想法。生前遗嘱被认为是医护人员和患者之间的一份合同,在精神残疾的情况下为治疗选择提供指导。其目的是扩大病人的自主权,并保护医护人员免受不当行为的指控。然而,不同类型的ACP是否实现了这些目标,而不是以次要收益为目标,这是值得怀疑的。我的讨论表明,目前对ACP的推广并不总是与ACP最初的意图进行批判性的接触,甚至可能追求与尊重自治背道而驰的成功概念。当高参与率被视为机构ACP项目成功的指标时,这种风险可能尤其明显。我进一步认为,库特纳的两个最初目标——保护病人的自主权和防止对不当行为的指控——几乎不可能同时实现,因为他们同时追求的目标没有承认,病人和护理人员对可能出现的判断错误有截然相反的需要。我的结论是,现代ACP成功的最现实的想法是承认持续对话的重要性,讨论什么是适当的照顾和目标的多样性,而不是面对争议的任何形式的预付款和合同保险。
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引用次数: 5
Human research ethics committees members: ethical review personal perceptions. 人类研究伦理委员会成员:伦理审查个人看法。
IF 1.6 Q1 Arts and Humanities Pub Date : 2021-07-01 Epub Date: 2021-06-25 DOI: 10.1007/s40592-021-00130-8
Boris Handal, Chris Campbell, Kevin Watson, Marguerite Maher, Keagan Brewer, Anne-Marie Irwin, Marc Fellman

This study aims to characterise Human Research Ethics Committee (HREC) members' perceptions on five main themes associated with ethics reviews, namely, the nature of research, ethical/moral issues, assent, participants' risk and HREC prerogatives issues. Three hundred and sixteen HREC members from over 200 HRECs throughout Australia responded to an online questionnaire survey. The results show that in general, HREC members' beliefs are reasoned and align with sound principles of ethical reviews. There seems to be a disposition for living up to ethical/moral values, avoiding the issue of consent waivers and respecting participants' welfare, as well as a sense of ambiguity about HREC prerogatives. Problematic areas were a tendency towards over-valuing quantitative research methods for their perceived validity and a neutral view on issuing consent waivers to participants with intellectual disability and, finally, the belief that research that limits disclosure, plans deception or actively conceals is morally unjustifiable. Implications for professional development and policy-making are discussed.

本研究旨在描述人类研究伦理委员会(HREC)成员对与伦理审查相关的五个主要主题的看法,即研究的性质、伦理/道德问题、同意、参与者的风险和HREC特权问题。来自澳大利亚200多个HREC的316名HREC成员回答了一项在线问卷调查。结果表明,总体而言,HREC成员的信念是合理的,并与健全的伦理审查原则相一致。似乎有一种符合伦理/道德价值观的倾向,避免同意放弃的问题,尊重参与者的福利,以及对HREC特权的模糊感。有问题的地方是,人们倾向于过分重视定量研究方法的有效性,对智力残疾参与者的同意弃权持中立态度,最后,认为限制披露、计划欺骗或积极隐瞒的研究在道德上是不合理的。讨论了对专业发展和政策制定的影响。
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引用次数: 1
Changing the channel on medical ethics education: systematic review and qualitative analysis of didactic-icebreakers in medical ethics and professionalism teaching. 改变医学伦理教育的渠道:对医学伦理和职业精神教学中的破题者进行系统回顾和定性分析。
IF 1.6 Q2 ETHICS Pub Date : 2021-07-01 Epub Date: 2020-10-17 DOI: 10.1007/s40592-020-00120-2
Abbas Rattani, Dalia Kaakour, Raafay H Syed, Abdul-Hadi Kaakour

As medical ethics and professionalism education continues to equip medical students and residents with long-lasting tools, educators should continue to supplement proven teaching strategies with engaging, relatable, and generationally appropriate didactic supplements. However, popular teaching aids have recently been criticized in the literature and summative information on alternatives is absent. The purpose of this review is to evaluate and assess the functional use and application of short form audiovisual didactic supplements or "icebreakers" in medical ethics and professionalism teaching. A systematic review of both the medical and humanities literature (i.e., PubMed/MEDLINE, Cochrane Library, and JSTOR) was conducted from inception to August 1, 2019. Final articles were subjected to a qualitative appraisal and thematic analysis. Thirteen articles were included for final analysis. Sixty-nine percent (n = 9) of the studies were published after 2000. Two studies were qualitative, one study was quantitative, and the remaining articles were commentaries. Short form audiovisual media was most popular outside of the United States (n = 10). Sixty-nine percent (n = 9) of articles advocated for self-contained media in the form of trigger films or short films/videos, while the remaining articles (n = 4) discussed the use of TV/film clips. Producibility of media was exclusive to short/trigger films. Nine themes were identified in the content analysis: adaptability, conversation catalyst, effective, engaging, nuance, practice, producibility, real, and subject diversity. The three most common themes in descending order of frequency were: conversation catalyst, realness, and adaptability. Trigger films represent an effective and unique pedagogical strategy in supplementing current medical ethics and professionalism teaching at the medical school level.

随着医学伦理和职业精神教育不断为医学生和住院医师提供长效工具,教育者应继续采用引人入胜、贴近生活、适合不同年龄段的说教式辅助手段,来补充行之有效的教学策略。然而,近来流行的教学辅助工具在文献中受到了批评,而且缺乏有关替代品的总结性信息。本综述旨在评价和评估简短的视听说教补充材料或 "破冰 "在医学伦理和职业精神教学中的功能性使用和应用。从开始到 2019 年 8 月 1 日,我们对医学和人文学科文献(即 PubMed/MEDLINE、Cochrane Library 和 JSTOR)进行了系统性回顾。最后对文章进行了定性评估和专题分析。最终分析纳入了 13 篇文章。69%的研究(n = 9)发表于 2000 年之后。两项研究为定性研究,一项研究为定量研究,其余文章为评论文章。短篇视听媒体在美国以外最受欢迎(n = 10)。69%的文章(n = 9)主张使用触发影片或短片/视频形式的自制媒体,其余文章(n = 4)则讨论了电视/电影剪辑的使用。媒体的可制作性仅限于短片/触发片。内容分析确定了九个主题:适应性、对话催化剂、有效性、参与性、细微差别、实践、可制作性、真实和主题多样性。最常见的三个主题从高到低依次为:对话催化剂、真实性和适应性。触发式电影代表了一种有效而独特的教学策略,可以补充当前医学院层面的医学伦理和职业精神教学。
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引用次数: 0
Can 'eugenics' be defended? “优生学”可以辩护吗?
IF 1.6 Q1 Arts and Humanities Pub Date : 2021-07-01 Epub Date: 2021-05-25 DOI: 10.1007/s40592-021-00129-1
Walter Veit, Jonathan Anomaly, Nicholas Agar, Peter Singer, Diana S Fleischman, Francesca Minerva

In recent years, bioethical discourse around the topic of 'genetic enhancement' has become increasingly politicized. We fear there is too much focus on the semantic question of whether we should call particular practices and emerging bio-technologies such as CRISPR 'eugenics', rather than the more important question of how we should view them from the perspective of ethics and policy. Here, we address the question of whether 'eugenics' can be defended and how proponents and critics of enhancement should engage with each other.

近年来,围绕“基因增强”话题的生物伦理讨论越来越政治化。我们担心人们过于关注语义问题,即我们是否应该将特定的实践和新兴的生物技术(如CRISPR)称为“优生学”,而不是更重要的问题,即我们应该如何从伦理和政策的角度看待它们。在这里,我们讨论的问题是“优生学”是否可以辩护,以及强化的支持者和批评者应该如何相互接触。
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引用次数: 12
Public perceptions on Controlled Human Infection Model (CHIM) studies-a qualitative pilot study from South India. 公众对受控人类感染模型(CHIM)研究的看法——一项来自南印度的定性试点研究。
IF 1.6 Q1 Arts and Humanities Pub Date : 2021-07-01 Epub Date: 2020-10-21 DOI: 10.1007/s40592-020-00121-1
Manjulika Vaz, Olinda Timms, Avita Rose Johnson, Rathna Kumari S, Mala Ramanathan, Mario Vaz

Research using Controlled Human Infection Models is yet to be attempted in India. This study was conducted to understand the perceptions of the lay public and key opinion makers prior to the possible introduction of such studies in the country. 110 respondents from urban and rural Bangalore district were interviewed using qualitative research methods of Focus Group Discussions and In-depth Interviews. The data was analyzed using grounded theory. Safety was a key concern of the lay public, expressed in terms of fear of death. The notion of infecting a healthy volunteer, the possibility of continued effects beyond the study duration and the likelihood of vulnerable populations volunteering solely for monetary benefit, were ethical concerns. Public good outcomes such as effective treatments, targeted vaccines and prevention of diseases was necessary justification for such studies. However, the comprehension of this benefit was not clear among non-medical, non-technical respondents and suggestions to seek alternatives to CHIMs repeatedly arose. There was a great deal of deflection-with each constituency feeling that people other than themselves may be ideally suited as participants. Risk takers, those without dependents, the more health and research literate, financially sound and those with an altruistic bent of mind emerged as possible CHIM volunteers. While widespread awareness and advocacy about CHIM is essential, listening to plural voices is the first step in public engagement in ethically contentious areas. Continued engagement and inclusive deliberative processes are required to redeem the mistrust of the public in research and rebuild faith in regulatory systems.

印度还在尝试使用受控人类感染模型进行研究。进行这项研究是为了在可能在该国进行这种研究之前了解非专业公众和主要舆论制造者的看法。采用焦点小组讨论和深度访谈的定性研究方法,对来自班加罗尔城乡的110名受访者进行了访谈。数据是用有根据的理论来分析的。安全是外行公众最关心的问题,表现为对死亡的恐惧。感染健康志愿者的概念、在研究持续时间之后持续影响的可能性以及弱势群体仅仅为了金钱利益而志愿服务的可能性都是伦理问题。诸如有效治疗、有针对性的疫苗和疾病预防等公益成果是进行此类研究的必要理由。然而,非医学、非技术受访者对这一益处的理解并不清楚,寻求替代中西医结合的建议一再出现。每个选民都觉得除了他们自己以外的人更适合作为参与者,这就产生了很大的偏差。愿意承担风险的人、没有家属的人、更了解健康和研究的人、经济状况良好的人以及有利他主义倾向的人都可能成为CHIM的志愿者。虽然对CHIM的广泛认识和倡导至关重要,但倾听多方声音是公众参与伦理争议领域的第一步。要挽回公众对研究的不信任,重建对监管体系的信心,就需要持续的参与和包容性的审议过程。
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引用次数: 5
Radical enhancement as a moral status de-enhancer. 激进的强化是一种道德地位的削弱。
IF 1.6 Q2 ETHICS Pub Date : 2020-12-01 DOI: 10.1007/s40592-020-00118-w
Jesse Gray

Nicholas Agar, Jeff McMahan and Allen Buchanan have all expressed concerns about enhancing humans far outside the species-typical range. They argue radically enhanced beings will be entitled to greater and more beneficial treatment through an enhanced moral status, or a stronger claim to basic rights. I challenge these claims by first arguing that emerging technologies will likely give the enhanced direct control over their mental states. The lack of control we currently exhibit over our mental lives greatly contributes to our sense of vulnerability. I then argue moral status should be viewed in terms of vulnerability. The enhanced will slowly gain the ability to command their mental states, reducing their vulnerability. These radically enhanced beings will have greater capacities, and possibly an inner life more valuable than our own. They will also be less vulnerable, and as a result, their moral status will be subordinate to our own.

尼古拉斯-阿加尔(Nicholas Agar)、杰夫-麦克马汉(Jeff McMahan)和艾伦-布坎南(Allen Buchanan)都对远远超出物种典型范围的人类强化表示担忧。他们认为,从根本上增强的人类将通过提高道德地位或对基本权利的更强要求,有权获得更多、更有益的待遇。我对这些说法提出了质疑,首先我认为,新兴技术很可能会让强化人直接控制自己的精神状态。我们目前对自己的精神生活缺乏控制,这在很大程度上加剧了我们的脆弱感。然后,我认为应该从脆弱性的角度来看待道德地位。强化人将慢慢获得控制自己精神状态的能力,从而降低他们的脆弱性。这些从根本上得到强化的生命将拥有更强的能力,其内在生命可能比我们自己的生命更有价值。他们的脆弱性也会降低,因此,他们的道德地位将从属于我们自己。
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引用次数: 0
A general approach to compensation for losses incurred due to public health interventions in the infectious disease context. 在传染病方面,对公共卫生干预措施造成的损失进行补偿的一般方法。
IF 1.6 Q1 Arts and Humanities Pub Date : 2020-12-01 DOI: 10.1007/s40592-020-00104-2
Søren Holm

This paper develops a general approach to how society should compensate for losses that individuals incur due to public health interventions aimed at controlling the spread of infectious diseases. The paper falls in three parts. The first part provides an initial introduction to the issues and briefly outlines five different kinds of public health interventions that will be used as test cases. They are all directed at individuals and aimed at controlling the spread of infectious diseases (1) isolation, (2) quarantine, (3) recommended voluntary social distancing, (4) changes in health care provision for asymptomatic carriers of multi-resistant microorganisms, and (5) vaccination. The interventions will be briefly described including the various risks, burdens and harms individuals who are subject to these interventions may incur. The second part briefly surveys current compensation mechanisms as far as any exist and argue that even where they exist they are clearly insufficient and do not provide adequate compensation. The third part will then develop a general framework for compensation for losses incurred due to public health interventions in the infectious disease context. This is the major analytical and constructive part of the paper. It first analyses pragmatic and ethical arguments supporting the existence of an obligation on the part of the state to compensate for such losses, and then considers whether this obligation can be defeated by (1) resource considerations, or (2) issues relating to personal responsibility.

本文就社会应如何补偿个人因旨在控制传染病传播的公共卫生干预措施而遭受的损失,提出了一种一般性方法。本文分为三个部分。第一部分初步介绍了相关问题,并简要概述了将作为测试案例的五种不同的公共卫生干预措施。它们都针对个人,旨在控制传染病的传播:(1) 隔离;(2) 检疫;(3) 建议自愿拉开社会距离;(4) 改变为无症状的多重耐药微生物携带者提供的医疗服务;(5) 接种疫苗。将简要介绍这些干预措施,包括受这些干预措施影响的个人可能遭受的各种风险、负担和伤害。第二部分将对目前存在的补偿机制进行简要调查,并指出即使存在补偿机制,这些机制也明显不足,没有提供足够的补偿。然后,第三部分将就传染病背景下公共卫生干预造成的损失制定一个总体补偿框架。这是本文的主要分析和建设性部分。它首先分析了支持国家有义务赔偿此类损失的实用主义和伦理学论据,然后考虑这一义务是否会因(1)资源方面的考虑或(2)与个人责任有关的问题而落空。
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引用次数: 0
Infection control measures in times of antimicrobial resistance: a matter of solidarity. 抗微生物药物耐药性时期的感染控制措施:一个团结的问题。
IF 1.6 Q1 Arts and Humanities Pub Date : 2020-12-01 Epub Date: 2020-11-07 DOI: 10.1007/s40592-020-00119-9
Babette Rump, Aura Timen, Marlies Hulscher, Marcel Verweij

Control measures directed at carriers of multidrug-resistant organisms are traditionally approached as a trade-off between public interests on the one hand and individual autonomy on the other. We propose to reframe the ethical issue and consider control measures directed at carriers an issue of solidarity. Rather than asking "whether it is justified to impose strict measures", we propose asking "how to best care for a person's carriership and well-being in ways that do not imply an unacceptable risk for others?". A solidarity approach could include elevating baseline levels of precaution measures and accepting certain risks in cases where there is exceptionally much at stake. A generous national compensation policy that also covers for costs related to dedicated care is essential in a solidarity approach. An additional benefit of reframing the questions is that it helps to better acknowledge that being subjected to control measures is a highly personal matter.

针对多药耐药生物携带者的控制措施传统上被视为一方面是公共利益,另一方面是个人自主之间的权衡。我们建议重新定义道德问题,并将针对运营商的控制措施视为团结的问题。与其问“采取严格措施是否合理”,不如问“如何以不给他人带来不可接受风险的方式,最好地照顾一个人的身体和健康?”团结一致的做法可包括提高预防措施的基线水平,并在风险特别大的情况下接受某些风险。一项慷慨的国家补偿政策也包括与专门护理有关的费用,这对于团结一致的做法至关重要。重新定义问题的另一个好处是,它有助于更好地认识到,受到控制措施的影响是一个高度个人化的问题。
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引用次数: 3
Embryo experimentation: is there a case for moving beyond the '14-day rule'. 胚胎实验:是否有理由超越“14天规则”?
IF 1.6 Q1 Arts and Humanities Pub Date : 2020-12-01 DOI: 10.1007/s40592-020-00117-x
Grant Castelyn

Recent scientific advances have indicated that it may be technically feasible to sustain human embryos in vitro beyond 14 days. Research beyond this stage is currently restricted by a guideline known as the 14-day rule. Since the advances in embryo culturing there have been calls to extend the current limit. Much of the current debate concerning an extension has regarded the 14-day rule as a political compromise and has, therefore, focused on policy concerns rather than assessing the philosophical foundations of the limit. While there are relevant political considerations, I maintain that the success of extension arguments will ultimately depend on the strength of the justifications supporting the current 14-day limit. I argue that the strongest and most prevalent justifications for the 14-day rule-an appeal to individuation and neural development-do not provide adequate support for the limit of 14 days. I instead suggest that an alternative justification based on sentience would constitute a more defensible basis for embryo protection and that a consideration of such grounds appears to support an amendment to the current limit, rather than the retention of it. While these conclusions do not establish conclusively that the current limit should be extended; they do suggest that an extension may be warranted and permissible. As such, this paper offers grounds on which a reassessment of the 14-day rule may be justified.

最近的科学进展表明,在体外维持人类胚胎超过14天在技术上是可行的。超过这一阶段的研究目前受到14天规则的限制。自从胚胎培养取得进展以来,一直有人呼吁延长目前的限制。目前关于延期的辩论,大部分都把14天的规定视为一种政治妥协,因此,关注的是政策问题,而不是评估上限的哲学基础。虽然有相关的政治考虑,但我认为延长辩论的成功最终将取决于支持目前14天限制的理由的力度。我认为,14天规则最有力和最普遍的理由——对个性化和神经发育的呼吁——并没有为14天的限制提供足够的支持。相反,我建议,基于感觉的另一种理由将构成保护胚胎的更站得住脚的基础,对这种理由的考虑似乎支持对目前限制的修正,而不是保留它。虽然这些结论并未确定应延长目前的限额;他们确实建议延期是有保证和允许的。因此,本文提供了重新评估14天规则的理由。
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引用次数: 7
Emerging moral status issues. 新兴的道德地位问题。
IF 1.6 Q1 Arts and Humanities Pub Date : 2020-12-01 Epub Date: 2020-12-04 DOI: 10.1007/s40592-020-00124-y
Julian J Koplin, Christopher Gyngell

Many controversies in bioethics turn on questions of moral status. Some moral status issues have received extensive bioethical attention, including those raised by abortion, embryo experimentation, and animal research. Beyond these established debates lie a less familiar set of moral status issues, many of which are tied to recent scientific breakthroughs. This review article surveys some key developments that raise moral status issues, including the development of in vitro brains, part-human animals, "synthetic" embryos, and artificial womb technologies. It introduces the papers in this Special Issue, contextualises their contributions to the moral status literature, and highlights some enduring challenges of determining the moral status of novel types of beings.

生命伦理学中的许多争议都涉及道德地位问题。一些道德地位问题受到了广泛的生物伦理学关注,包括堕胎、胚胎实验和动物研究引起的道德地位问题。在这些既定的争论之外,还有一组不太为人所知的道德地位问题,其中许多问题与最近的科学突破有关。本文综述了一些引起道德地位问题的关键进展,包括体外大脑、半人动物、“合成”胚胎和人工子宫技术的发展。它介绍了本特刊中的论文,将其对道德地位文献的贡献置于背景中,并强调了确定新型生物道德地位的一些持久挑战。
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引用次数: 4
期刊
Monash Bioethics Review
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