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Allergic Intimacies: Food, Disability, Desire, and Risk by Michael Gill (review) 过敏性亲密关系:食物、残疾、欲望和风险》,迈克尔-吉尔著(评论)
IF 1.4 4区 哲学 Q3 ETHICS Pub Date : 2024-07-02 DOI: 10.1353/ken.2023.a931055
Megan A. Dean
<span><span>In lieu of</span> an abstract, here is a brief excerpt of the content:</span><p> <span>Reviewed by:</span> <ul> <li><!-- html_title --> <em>Allergic Intimacies: Food, Disability, Desire, and Risk</em> by Michael Gill <!-- /html_title --></li> <li> Megan A. Dean (bio) </li> </ul> Review of Michael Gill, <em>Allergic Intimacies: Food, Disability, Desire, and Risk</em> (Fordham University Press, 2023) <p>In the early days of the COVID-19 pandemic, the mundane activity of eating with or near others became physically hazardous and normatively fraught. Nourishing oneself outside one's home could raise serious risks to one's health and wellbeing, and was suddenly subject to new policies and prohibitions aimed at minimizing harm and liability. The decision to eat out demanded personal calculations of risk and benefit, as well as interpersonal negotiation, sometimes prompting contentious conversations about the realities of disease transmission and our moral responsibilities. For many people, coming to think about eating outside the home as a pressing and significant threat to health and life was a radical shift. Yet, as Michael Gill's <em>Allergic Intimacies: Food, Disability, Desire, and Risk</em> details, the experience of eating meals as risking lethal consequences, demanding active personal risk management (including knowledge and negotiation of laws and policies), and straining important interpersonal relationships, is quite familiar to those living with food allergies.</p> <p><em>Allergic Intimacies</em> offers a rich and generative exploration of the challenges of living with food allergies in the United States. A disability studies scholar, Gill frames the book as an examination of the "meanings" of food allergy from an intersectional perspective that centers both disability and race (ix). The book analyses various cultural representations of and narratives about food allergy, and traces the health effects of social and institutional structures, policies, and practices, while interweaving these findings with Gill's personal experiences with nut allergies. The focus throughout is on IgE-mediated food allergies, the sort which can cause anaphylaxis and which are exemplified by peanut allergies. The book's central claim is that common individualistic approaches to food allergy—approaches that emphasize personal and familial responsibility for allergy management—are inadequate, failing to address the systemic and structural issues that significantly disadvantage food-allergic people in marginalized groups in the U.S., especially Black people. These structural <strong>[End Page 421]</strong> issues include barriers to accessing not only food and medicine, but also the social and economic resources necessary to advocate for food allergy needs.</p> <p>The book contains a preface, introduction, and brief conclusion, along with four main chapters. The introduction presents a medical and epidemiological overview of food allergies, including va
以下是内容的简要摘录,以代替摘要:评论者: 过敏性亲密关系:Megan A. Dean (bio) Review of Michael Gill, Allergic Intimacies:食物、残疾、欲望与风险》(福特汉姆大学出版社,2023 年)在 COVID-19 大流行的早期,与他人一起或靠近他人进食这一平凡的活动变得既危险又充满规范性。外出就餐可能会给个人的健康和福祉带来严重风险,并突然受到旨在尽量减少伤害和责任的新政策和禁令的约束。外出就餐的决定需要个人对风险和利益进行计算,还需要进行人际谈判,有时会引发关于疾病传播的现实和我们的道德责任的争议性对话。对许多人来说,将外出就餐视为对健康和生命的紧迫而重大的威胁是一种彻底的转变。然而,正如迈克尔-吉尔(Michael Gill)的《过敏性亲密关系》(Allergic Intimacies)一书所言:食物、残疾、欲望和风险》一书中详细描述的那样,对于食物过敏症患者来说,进餐有可能造成致命后果,需要积极的个人风险管理(包括了解和协商法律和政策),并使重要的人际关系变得紧张。过敏性亲密关系》对美国食物过敏患者的生活挑战进行了丰富而有启发性的探讨。作为一名残疾研究学者,吉尔从交叉视角出发,以残疾和种族为中心,对食物过敏的 "意义 "进行了研究(ix)。该书分析了有关食物过敏的各种文化表述和叙事,追溯了社会和制度结构、政策和实践对健康的影响,同时将这些发现与吉尔个人的坚果过敏经历交织在一起。全书的重点是 IgE 介导的食物过敏,这种过敏可导致过敏性休克,以花生过敏为例。该书的核心主张是,针对食物过敏的常见个人主义方法--强调个人和家庭对过敏控制的责任的方法--是不充分的,未能解决系统性和结构性问题,这些问题使美国边缘群体中的食物过敏者,尤其是黑人处于非常不利的地位。这些结构性 [尾页 421]问题不仅包括获得食物和药物的障碍,还包括倡导食物过敏需求所需的社会和经济资源。本书包括序言、导言和简短的结论,以及四个主要章节。导言介绍了食物过敏的医学和流行病学概况,包括近几十年来食物过敏发病率明显上升的各种假设。该书还讨论了四种 "情景",以激发对食物过敏进行超越个人主义、"单轴"(即非交叉)分析的必要性:肾上腺素注射器的使用(8-14)、食品工业过敏原标签做法(14-16)、航空公司食物过敏原政策(16-18)以及《英国烘焙大赛》对食物过敏的处理(18-23)。第一章 "食物过敏、免疫和环境的关系 "探讨了对食物过敏者和其他饮食限制者的责任,讨论了风险管理、身份以及无过敏原空间的伦理和政治等主题,包括共餐、学校和飞机。第二章是 "无坚果松鼠和花生过敏公主":第二章 "无坚果松鼠和花生过敏公主:食物过敏、身份和儿童读物 "对有关食物过敏的儿童读物进行了批判性分析,指出大多数英语儿童读物都以患有花生过敏症的白人男孩为中心,他们的经历反映了经济和社会特权。这些儿童读物在很大程度上忽视了许多边缘化家庭所经历的挑战,例如需要努力争取学校承认和照顾食物过敏,社区成员对提供此类照顾的抵制,以及难以获得不含过敏原的食物。第三章 "液体交换引起的过敏反应 "提出了食物过敏者接吻和性行为的伦理问题。由于过敏原可以通过体液传递,因此食物过敏使 "安全 "的亲密身体接触变得更加复杂(57-58)。吉尔借鉴了米娅-明格斯(Mia Mingus)的 "获取亲密关系 "概念(2011 年),提出了一种相互依存的伦理观,即以沟通和同意为中心,同时为愉悦和自发性留出空间。最后一章 "你吃了什么? 故意、意外和死亡 "探讨了与那些故意...
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引用次数: 0
Minding Brain Injury, Consciousness, and Ethics: Discourse and Deliberations 关注脑损伤、意识和伦理:讨论与审议
IF 1.4 4区 哲学 Q3 ETHICS Pub Date : 2024-01-24 DOI: 10.1353/ken.2023.a917928
Joseph J. Fins, James Giordano
<span><span>In lieu of</span> an abstract, here is a brief excerpt of the content:</span><p> <ul> <li><!-- html_title --> Minding Brain Injury, Consciousness, and Ethics: <span>Discourse and Deliberations</span> <!-- /html_title --></li> <li> Joseph J. Fins (bio) and James Giordano (bio) </li> </ul> <p><strong>T</strong>he annual John Collins Harvey Lecture at the Georgetown University’s Pellegrino Center for Clinical Bioethics is a forum for addressing contemporary topics at the intersection of medicine and bioethics. This year, in marking the decadal anniversary of the launch of the Brain Research through Advancing Innovative Neurotechnology (BRAIN) Initiative, the Harvey Lecture provided an interactive discussion with renowned clinician, researcher, scholar, and author, Joseph J. Fins, MD—who is the E. William Davis, Jr., MD Professor of Medical Ethics, Chief of the Division of Medical Ethics, and a Professor of Medicine at Weill Cornell Medical College—conducted by James Giordano, PhD, MPhil—who is a Professor of Neurology and Biochemistry, and Chief of the Pellegrino Center’s Neuroethics Studies Program at the Georgetown University Medical Center. The discourse focused upon the topic of covert consciousness, and the ways in which current and developing brain science technologies, together with revised practices of medicine, in general, may afford new opportunities in patient care, but may also give rise to issues, questions, challenges, and opportunities for neuroethics.</p> <strong>Prof. James GIORDANO:</strong> <p>Prof. Fins, your most recent book, <em>Rights Come to Mind: Brain Injury, Ethics, and the Struggle for Consciousness</em> (Fins 2015), addresses your ongoing work to employ current and emerging neurological approaches to reveal conscious functions in patients with profound brain injury and disease. To be sure, the destination—if you will—is to talk about covert consciousness. But in commencing this discussion, I’d like to propose a route, which traces your professional journey to this point in your career, and how it led you on your search to reveal consciousness in those patients who lack expressive capability. You went into palliative care first, and that brought you to where you are today. <strong>[End Page 227]</strong></p> <strong>Prof. Joseph J. FINS:</strong> <p>First, let me thank you and the Pellegrino Center for the honor of giving the John Harvey Collins Lecture in such an interactive manner. The forefront of neurological care—and the neuroethical issues and methods focal to such practice—wasn’t what I initially intended to do professionally, but I think that therein is a good lesson for young people’s career aspirations. Simply put, one doesn’t always know where they’ll end up at the beginning of the journey, and as Kierkegaard said, life is lived forward, but is understood backwards (Kierkegaard 1843).</p> <p>In the nineties and the early 2000s, I was trying to help improve the quality of care of people at the end o
以下是内容的简要摘录,以代替摘要: 关注脑损伤、意识和伦理:约瑟夫-J-芬斯(Joseph J. Fins)(简历)和詹姆斯-乔尔达诺(James Giordano)(简历) 乔治敦大学佩莱格里诺临床生物伦理学中心(Pellegrino Center for Clinical Bioethics)一年一度的约翰-柯林斯-哈维讲座(John Collins Harvey Lecture)是探讨医学与生物伦理学交叉领域当代话题的论坛。今年,为纪念 "通过推进创新神经技术进行脑研究(BRAIN)计划 "启动十周年,哈维讲座与著名临床医生、研究员、学者和作家约瑟夫-J-芬斯(Joseph J. Fins)医学博士进行了互动讨论、在乔治敦大学医学中心神经病学和生物化学教授、佩莱格里诺中心神经伦理学研究项目主任 James Giordano 博士的主持下,医学博士、医学伦理学教授、威尔康奈尔医学院医学教授约瑟夫-J-芬斯(Joseph J. Fins)进行了互动讨论。讨论的重点是隐蔽意识这一主题,以及当前和发展中的脑科学技术如何与经过修改的医学实践相结合,为病人护理带来新的机遇,同时也为神经伦理学带来问题、疑问、挑战和机遇。詹姆斯-乔丹诺教授:芬斯教授,您最近出版的新书《权利涌上心头:脑损伤、伦理学和意识之争》(芬斯,2015 年)讲述了您正在开展的工作,即运用当前和新兴的神经学方法揭示深度脑损伤和疾病患者的意识功能。可以肯定的是,如果你愿意的话,我们的目的是讨论隐蔽意识。但在开始讨论时,我想提出一条路线,追溯你职业生涯中走到这一步的专业历程,以及这条路线是如何引导你探索如何揭示那些缺乏表达能力的病人的意识的。你先是从事姑息治疗,然后才有了今天的成就。[约瑟夫-J-芬斯教授:首先,请允许我感谢您和佩莱格里诺中心,让我有幸以这种互动的方式发表约翰-哈维-柯林斯讲座。神经病学护理的最前沿--以及与这种实践相关的神经伦理问题和方法--并不是我最初打算从事的职业,但我认为这对年轻人的职业理想是一个很好的启示。简而言之,一个人在旅途的起点并不总是知道自己的终点在哪里,正如克尔凯郭尔所说,生活是向前的,但理解却是向后的(克尔凯郭尔,1843 年)。在九十年代和二十一世纪初,我曾试图帮助改善临终关怀的质量,并写了一本书,名为《姑息关怀的伦理》(The Palliative Ethic of Care):我写了一本书,名为《姑息治疗的伦理:生命终结时的临床智慧》(Fins,2006 年),在书中我论述了phronesis--实践智慧--的概念,将理论与实践相结合,以改善人们的死亡方式。我对昆兰案(Quinlan,1976 年)和死亡权产生了兴趣,大约在同一时间,我遇到了康奈尔大学的一位同事:尼古拉斯-D-希夫医生。希夫博士是一位神经学家,他是弗雷德-普卢姆(Fred Plum)的门生,弗雷德-普卢姆是早在 1972 年就与布莱恩-詹尼特(Bryan Jennett)共同提出植物人状态概念的鼻祖。弗雷德是我们俩在康奈尔大学的老师。尼科(希夫博士)对意识障碍患者很感兴趣,并开始设想利用脑深部刺激(DBS)来治疗处于微意识状态的患者--我们最终做到了。我意识到,患有这些意识障碍的整个人群在某种程度上被边缘化了,而对他们的忽视本质上可以追溯到对死亡权利的考虑。昆兰案确立了死亡权,因为休斯法官--新泽西州最高法院的主审首席法官--谈到昆兰女士丧失了认知和智能状态,这是她享有死亡权的道德依据,因为这被视为一种徒劳无益的状况。在随后的几年里,我从我在姑息治疗和临终关怀方面的背景中认识到,[1] 我们对 "无用 "的概念过于笼统......
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引用次数: 0
A Theory of Bioethics by David DeGrazia and Joseph Millum (review) 大卫-德格拉西亚和约瑟夫-米勒姆的《生物伦理学理论》(评论)
IF 1.4 4区 哲学 Q3 ETHICS Pub Date : 2024-01-24 DOI: 10.1353/ken.2023.a917931
Colin Hoy, Winston Chiong
<span><span>In lieu of</span> an abstract, here is a brief excerpt of the content:</span><p> <span>Reviewed by:</span> <ul> <li><!-- html_title --> <em>A Theory of Bioethics</em> by David DeGrazia and Joseph Millum <!-- /html_title --></li> <li> Colin Hoy (bio) and Winston Chiong (bio) </li> </ul> Review of David DeGrazia and Joseph Millum, <em>A Theory of Bioethics</em> (Cambridge University Press, 2021) <p>David DeGrazia and Joseph Millum’s <em>A Theory of Bioethics</em> 2021 arrives at a curious time for an ambitious effort at systematic theory construction, seemingly out of step with bioethical fashion. At the same time, a prominent group of philosophical bioethicists authored an article, possibly with a touch of defensiveness, to “make the case that philosophy and philosophers still have a very important and meaningful role to play in contemporary bioethics” (Blumenthal-Barby et al. 2021). Meanwhile, the annual meeting of the American Society for Bioethics and Humanities included several expressions of impatience with the historical privileging of philosophy over more empirical, situated, and community-oriented approaches to moral problems in health.</p> <p>DeGrazia and Millum’s work itself reflects the current state of bioethics and how it has changed since the heyday of grand bioethical theory construction in the late twentieth century. To apply Parfit’s philosophical taxonomy (1984), the general frameworks promulgated by theorists like Veatch, Engelhardt, and Gert, as well as Beauchamp and Childress, were by necessity <em>revisionary</em>. These bioethical theories were whole-cloth alternatives to a conventional and paternalistic medical ethos that was already widely acknowledged as unsatisfactory. Today, however, bioethics is a mature and institutionalized field, with well-established practices and a corpus of accepted tenets (alongside matters of ongoing but generally demarcated controversy). A plausible and fruitful contemporary theory of bioethics must be largely <em>descriptive</em>, in Parfit’s sense, providing an intellectual framework that gives coherence and sense to existing practice, while at the same time clarifying matters of confusion.</p> <p>In contemporary bioethics, a central component of this practice is the application of the four principles of biomedical ethics—non-maleficence, beneficence, justice and autonomy—not merely as originally proposed by Beauchamp and Childress (2019), but in their refined form, following decades of exchange, critique, and revision. DeGrazia and Millum’s theory begins with two core values: well-being and respect for rights holders. <strong>[End Page 321]</strong> The bulk of the book then applies the method of reflective equilibrium to specify these two values in terms of the canonical four principles, here treated as “mid-level” constructs with readier application to specific cases than the two core values. Experienced bioethicists may have an uncanny sense of setting off from a new trailhe
以下是内容的简要摘录,以代替摘要:评论者 大卫-德格拉兹亚和约瑟夫-米勒姆的《生命伦理学理论》 Colin Hoy(生物)和 Winston Chiong(生物) 评论大卫-德格拉兹亚和约瑟夫-米勒姆的《生命伦理学理论》(剑桥大学出版社,2021 年) 大卫-德格拉兹亚和约瑟夫-米勒姆的《生命伦理学理论》(剑桥大学出版社,2021 年)问世于一个奇怪的时期,对于一个系统理论建构的雄心勃勃的努力来说,似乎与生命伦理学的时尚格格不入。与此同时,一群著名的哲学生物伦理学家撰写了一篇文章,"论证哲学和哲学家在当代生物伦理中仍然扮演着非常重要和有意义的角色"(Blumenthal-Barby et al.)与此同时,美国生命伦理学与人文科学学会年会也多次表达了对哲学在解决健康领域道德问题方面的历史特权,而非更多的经验、情景和社区导向方法的不耐烦。DeGrazia 和 Millum 的著作本身就反映了生物伦理学的现状,以及自 20 世纪末生物伦理学理论建设的鼎盛时期以来,生物伦理学发生了怎样的变化。套用帕菲特的哲学分类法(1984 年),维奇、恩格尔哈特、格特以及博尚和柴尔德里斯等理论家颁布的总体框架必然是修正性的。这些生命伦理学理论是对传统的、家长式的医学伦理的全面替代。然而,今天的生命伦理学已经是一个成熟的、制度化的领域,有着完善的实践和公认的信条(同时也存在着持续的、但普遍有争议的问题)。按照帕菲特的观点,当代生物伦理学的合理和富有成果的理论必须在很大程度上是描述性的,提供一个知识框架,使现有的实践具有连贯性和合理性,同时澄清混乱的问题。在当代生命伦理学中,这一实践的核心内容是应用生物医学伦理学的四项原则--非恶意、受益、公正和自主--这不仅仅是博尚普和柴尔德里斯(2019)最初提出的原则,而是经过数十年的交流、批判和修订后的完善形式。DeGrazia 和 Millum 的理论始于两个核心价值:福祉和对权利持有者的尊重。[本书的大部分内容都运用了反思平衡的方法,用经典的四项原则来明确这两项价值,这些原则在本书中被视为 "中层 "建构,比这两项核心价值更容易应用于具体案例。有经验的生命伦理学家可能会有一种不可思议的感觉,就像从一个新的小路出发,但最终发现自己走的仍然是一条熟悉的路。不过,这种介绍和阐释四项原则的方式可能更容易为更多读者所接受,包括尚未熟悉博尚和柴尔德里斯讨论中所包含的修订、完善和妥协的高年级本科生和研究生。本书还有两个特点,建议将其作为受训人员和感兴趣的非专业人员加深对生命伦理学理解的资源。首先,本书清晰的风格和组织方法为非专业人士提供了一个值得欢迎的方向。在章节结构上,作者先概述了主要的争论观点,然后根据这些观点阐述了自己的立场。每一章都考虑了广义理论的应用,展示了广义理论如何阐明潜在的候选方法或政策,以及如何在理想和非理想情况下使用伦理分析工具来评估这些建议。这种讲授概念论证与实践之间关系的方法,对于许多最初不熟悉理论或对理论望而生畏的人来说,是可以理解的。其次,值得称赞的是,作者决定以电子版的形式提供该书,这也有可能扩大该著作的影响范围,特别是在资源不足的情况下,让生物伦理讨论中经常被忽视的各方参与进来。如上所述,虽然作者的方法是帕菲特意义上的描述性方法,但并不一定保守。在许多地方,作者强调了他们的理论如何包含了未被广泛接受的元素或得出了未被广泛接受的结论,并按照反思平衡的方法,从广泛的原则和对案例的特定判断两方面为这些立场进行了辩护。这要从他们的双重价值说起。
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引用次数: 0
The First Smart Pill: Digital Revolution or Last Gasp? 第一颗智能药丸:数字革命还是最后的喘息?
IF 1.4 4区 哲学 Q3 ETHICS Pub Date : 2024-01-24 DOI: 10.1353/ken.2023.a917930
Anna K. Swartz, Phoebe Friesen

Abilify MyCite was granted regulatory approval in 2017, becoming the world’s first “smart pill” that could digitally track whether patients had taken their medication. The new technology was introduced as one that had gained the support of patients and ethicists alike, and could contribute to solving the widespread and costly problem of patient nonadherence. Here, we offer an in-depth exploration of this narrative, through an examination of the origins and development of Abilify, the drug that would later become MyCite. This history illuminates how an antipsychotic can become a top-selling drug and maintain its blockbuster status for more than a decade. It also provides a detailed case study for how knowledge is constructed within the logic of biomedical capitalism, providing impetus to reexamine claims regarding how MyCite addresses patient nonadherence, engenders patient support, and is ethicist-approved.

2017 年,Abilify MyCite 获得监管部门批准,成为世界上首款可数字化追踪患者是否服药的 "智能药片"。这项新技术的推出得到了患者和伦理学家的支持,有助于解决患者普遍存在的不依从性问题,而且成本高昂。在此,我们将通过对后来成为 MyCite 的药物 Abilify 的起源和发展的研究,对这一叙述进行深入探讨。这段历史揭示了一种抗精神病药物是如何成为畅销药物,并将其畅销地位维持了十多年的。它还提供了一个详细的案例研究,说明知识是如何在生物医学资本主义的逻辑中构建起来的,从而推动我们重新审视有关 MyCite 如何解决患者不依从性、吸引患者支持以及获得伦理学家批准的说法。
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引用次数: 0
Social Robots to Fend Off Loneliness? 社交机器人能抵御孤独?
IF 1.4 4区 哲学 Q3 ETHICS Pub Date : 2024-01-24 DOI: 10.1353/ken.2023.a917929
Zohar Lederman, Nancy S. Jecker

Social robots are increasingly being deployed to address social isolation and loneliness, particularly among older adults. Clips on social media attest that individuals availing themselves of this option are pleased with their robot companions. Yet, some people find the use of social robots to meet fundamental human emotional needs disturbing. This article clarifies and critically evaluates this response. It sets forth a framework for loneliness, which characterizes one kind of loneliness as involving an affective experience of lacking human relations that provide certain social goods. Next, the article discusses social robots and critically reviews the literature on the ethics of using them in light of this loneliness characterization. Third, we present a normative argument connecting the philosophical critique of loneliness-as-absence with the design and deployment of social robots. Finally, we draw out the implications of our analysis for public health and for interrogating the aims of commercial companies who make social robots.

越来越多的人开始使用社交机器人来解决社会隔离和孤独问题,尤其是老年人。社交媒体上的一些片段证明,使用这种方法的人对他们的机器人伴侣很满意。然而,有些人认为使用社交机器人来满足人类基本的情感需求令人不安。本文对这种反应进行了澄清和批判性评估。它提出了一个孤独感框架,将一种孤独感描述为缺乏能提供某些社会物品的人际关系的情感体验。接下来,文章讨论了社交机器人,并根据这种孤独感的特征,批判性地回顾了有关使用社交机器人的伦理问题的文献。第三,我们提出了一个规范性论点,将 "孤独即缺失 "的哲学批判与社交机器人的设计和部署联系起来。最后,我们总结了我们的分析对公共卫生以及对制造社交机器人的商业公司的目标的影响。
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引用次数: 0
Editor's Note 编者按
IF 1.4 4区 哲学 Q3 ETHICS Pub Date : 2024-01-24 DOI: 10.1353/ken.2023.a917927
Quill Kukla
In lieu of an abstract, here is a brief excerpt of the content:

  • Editor’s Note
  • Quill Kukla, Editor-in-Chief

This issue of the Kennedy Institute of Ethics Journal contains two essays and one dialogue, all of which concern ethical and epistemological issues that arise at the meeting point of our cognitive and mental lives and technology.

In the first piece, two leading bioethicists with expertise in neurotechnology, James Giordano and Joseph J. Fins, discuss a wide range of complex problems surrounding people with disorders of consciousness that make their mental states opaque to observers. It is especially difficult to know how to respectfully care for and interact with such people, since we cannot directly communicate with them and our technological methods for discerning whether and how they are conscious are nascent and unreliable. People with these disorders challenge our norms for decision-making and patient care, including end of life care. It is easy for doctors, who may only sporadically have contact with people with these disorders, to be unaware of their consciousness altogether. Because caring for people with these sorts of consciousness disorders is typically technologically intense, such care also raises difficult questions concerning resource allocation. Giordano and Fins discuss these and a wide range of other issues in depth. Their discussion of how the tools of disability studies and disability rights advocacy can and should be applied when it comes to people with whom we cannot communicate is particularly powerful. As Fins points out, the important principle, “Nothing about us without us,” cannot be honored in the case of people whose voices and experiences we cannot discern; this slogan presupposes communicative abilities. Fins and Giordano challenge us to revisit our concepts of accessibility and inclusion in ways that might let them be adapted to the needs of people with consciousness disorders.

Phoebe Friesen and Anna Swartz—in “The First Smart Pill: Digital Revolution or Last Gasp?”—offer a critical social history of Abilify MyCite, a version of the popular antipsychotic drug Abilify, which contains a small sensor that digitally tracks when patients take the medication, thereby enabling compliance information to be shared with health care professionals. Friesen and Swartz show in detail the ways in which the story [End Page ix] of this drug’s use and uptake were fundamentally shaped by marketing pressures and financial incentives. Even though we do not actually have good evidence that the drug provides benefits that normal Abilify does not provide, nor that it increases compliance, Abilify MyCite was marketed as a success story. Bioethicists who were paid consultants for Otsuka, the maker of the drug, offered shallow analyses that justified the drug’s existe

以下是内容的简要摘录,以代替摘要: 编者按 奎尔-库克拉(Quill Kukla),主编 本期《肯尼迪伦理学研究所期刊》收录了两篇论文和一篇对话,均涉及在我们的认知和精神生活与技术的交汇点上出现的伦理学和认识论问题。在第一篇文章中,两位精通神经技术的顶尖生物伦理学家詹姆斯-焦尔达诺(James Giordano)和约瑟夫-J-芬斯(Joseph J. Fins)讨论了围绕意识障碍患者的一系列复杂问题,这些患者的精神状态对观察者来说是不透明的。由于我们无法与这些人直接交流,而且我们用于辨别他们是否有意识以及如何有意识的技术方法还处于萌芽阶段,并不可靠,因此要知道如何以尊重的态度照顾这些人并与他们互动尤为困难。患有这些疾病的人对我们的决策和病人护理(包括临终护理)规范提出了挑战。医生可能只是偶尔接触到这些失调症患者,很容易完全不了解他们的意识。由于对这类意识障碍患者的护理通常需要大量的技术,因此这类护理也提出了有关资源分配的难题。Giordano 和 Fins 深入讨论了这些问题以及其他一系列问题。他们对残疾研究和残疾人权利倡导的工具在涉及到无法与我们交流的人时如何应用以及应该如何应用的讨论尤为有力。正如芬斯指出的那样,"没有我们,就没有我们 "这一重要原则在我们无法辨别其声音和经历的情况下是无法兑现的;这一口号的前提是沟通能力。芬斯和乔尔达诺要求我们重新审视无障碍和全纳的概念,使其适应意识障碍者的需求。菲比-弗里森(Phoebe Friesen)和安娜-斯沃茨(Anna Swartz)--"第一颗智能药丸:提供了关于阿比利费 MyCite 的重要社会历史。阿比利费 MyCite 是一种流行的抗精神病药物,它含有一个小型传感器,能够以数字方式跟踪患者服药的时间,从而能够与医护人员共享遵医嘱信息。弗里森和斯沃茨详细介绍了营销压力和经济激励如何从根本上影响了这种药物的使用和吸收。尽管我们实际上并没有充分的证据证明这种药物能提供普通阿利福所不能提供的益处,也没有证据证明它能提高依从性,但阿利福 MyCite 却被当作一个成功的故事进行营销。为该药制造商大冢制药(Otsuka)提供有偿顾问服务的生命伦理学专家提供了肤浅的分析,证明该药的存在是合理的,他们主要关注的是依从性和安全性,而对有关隐私、监控和针对少数群体的深层伦理问题则一笔带过。弗里森和斯沃茨得出结论:"MyCite 不过是为了利用阿利费的巨大成功而采取的又一举措,而阿利费正在从一家日益绝望的公司手中溜走。他们的讨论提供了一个引人入胜的案例研究,说明了医学知识的生产及其被经济利益控制和塑造的复杂方式,以及医学界和生物伦理学界对技术修复的乐观热情。最后,佐哈尔-莱德曼(Zohar Lederman)和南希-杰克尔(Nancy Jecker)在他们的文章《社交机器人能抵御孤独吗》(Social Robots to Fend Off Loneliness?正如他们所指出的,孤独是一个紧迫的公共健康问题,尤其是在老年人和其他弱势群体中,但却很少受到生命伦理学的关注。他们指出,如果不深入研究孤独的本质和种类,就无法对机器人在帮助解决孤独问题方面可以发挥什么作用这一问题给出精细的答案。这是一个深奥的哲学课题,文章认为,孤独有不同的种类,其中许多主要涉及人与人之间互动的缺陷,而这种互动对我们来说有各种各样的目的,其中只有一部分可以由非人类机器人来实现。莱德曼和杰克尔提出了一个引人入胜的问题:欺骗是否是机器人为抵御孤独所能提供的帮助中不可或缺的一部分?
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引用次数: 0
Contributors. 撰稿人:
IF 1.1 4区 哲学 Q3 ETHICS Pub Date : 2024-01-01 DOI: 10.1353/ken.2024.a943426
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引用次数: 0
Introduction to the Kennedy Institute of Ethics Special Issue, "Situating Neurodiversity and Madness". 肯尼迪伦理研究所特刊导言,“定位神经多样性和疯狂”。
IF 1.1 4区 哲学 Q3 ETHICS Pub Date : 2024-01-01 DOI: 10.1353/ken.2024.a958990
Quill R Kukla, Rua Mae Williams
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引用次数: 0
Autonomy and Mental Health Care: Enabling The Pursuit of A Life Of Meaning. 自主和精神保健:追求有意义的生活。
IF 1.1 4区 哲学 Q3 ETHICS Pub Date : 2024-01-01 DOI: 10.1353/ken.2024.a958996
Abigail Gosselin

One of the central aims of mental healthcare should be to increase a person's autonomous agency. In a mental healthcare context, it is often argued that mental healthcare should maximize a person's autonomy so they can make autonomous choices about their treatment. My argument in this paper is broader: mental healthcare should increase autonomous agency so that a person can exercise direction over their life and live a life of meaning. Mental healthcare can and ought to increase autonomous agency by helping the person achieve both internal and external conditions of autonomy. Mental healthcare can fulfill these conditions by reducing mental illness symptoms and thus enhancing competence and voluntariness, increasing the capacity for reflective endorsement by examining the influence of social norms, enabling normative authority through the development of self-worth, and connecting individuals with services that can provide multiple good options to choose from.

精神保健的中心目标之一应该是增加一个人的自主能动性。在精神卫生保健的背景下,人们经常认为,精神卫生保健应该最大限度地提高一个人的自主权,这样他们就可以自主选择他们的治疗。我在这篇论文中的论点更广泛:精神卫生保健应该增加自主代理,这样一个人就可以在他们的生活中行使方向,过上有意义的生活。心理保健可以而且应该通过帮助患者实现自主的内部和外部条件来增加自主能动性。精神卫生保健可以通过以下方式满足这些条件:减少精神疾病症状,从而增强能力和自愿性,通过检查社会规范的影响增加反思认可的能力,通过发展自我价值来实现规范权威,并将个人与可以提供多种良好选择的服务联系起来。
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引用次数: 0
From Patients to Citizens-Narrative Solidarity in Healthcare. 从病人到公民--医疗保健中的叙事团结。
IF 1.1 4区 哲学 Q3 ETHICS Pub Date : 2024-01-01 DOI: 10.1353/ken.2024.a943430
Aleksandra Glos

This article analyzes the meaning of solidarity for bioethics and healthcare. Drawing on the anthropology of embodiment, it argues that solidarity arises upon relations of care for our vulnerable bodies and transforms it into our common democratic project. Its main focus is, therefore, not on distribution, which is the purpose of justice, but on the recognition and democratic inclusion of persons who-due to the vulnerable condition of their bodies-are still deprived of full participation in the public sphere. By reorienting caring relationships around the horizontal axis, solidarity obliges us to treat a person who is cared for not only as a passive recipient of healthcare goods, but as a fellow citizen and a partner in the process of care. It is argued that the model of narrative citizenship, by establishing discursive equality between a patient and a physician, can contribute to greater inclusion of vulnerable individuals into our societies.

本文分析了团结对于生命伦理学和医疗保健的意义。文章借鉴了体现人类学的观点,认为团结精神产生于对我们脆弱身体的关爱关系,并将其转化为我们共同的民主项目。因此,它的主要重点不在于分配(这是正义的目的),而在于对那些由于身体的脆弱状况而仍然被剥夺了充分参与公共领域的人的认可和民主包容。通过围绕横轴调整护理关系,团结使我们有义务不仅将被护理者视为医疗保健物品的被动接受者,而且将其视为同胞和护理过程中的合作伙伴。本文认为,叙事公民模式通过在病人和医生之间建立话语平等,有助于将弱势个人更多地纳入我们的社会。
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引用次数: 0
期刊
Kennedy Institute of Ethics Journal
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