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Careful the Things You Say, Children Will Listen: Parents, Adolescents, and Fairytales 小心你说的话,孩子会听:父母,青少年和童话
4区 医学 Q1 Arts and Humanities Pub Date : 2023-09-01 DOI: 10.1353/pbm.2023.a909726
Daniel J. Benedetti, Benjamin S. Wilfond
abstract: Being a parent is hard, particularly parenting adolescents, who need to be given choices and allowed the space to learn how to make choices for themselves, even when those choices result in negative consequences. This essay explores how Steven Sondheim and James Lapine's 1987 musical Into the Woods provides relatable stories of the challenges of being a parent, the challenges of parenting adolescents, and just how messy parents and families can be despite everyone trying their best. The stories of Little Red Riding Hood, Rapunzel, Jack, and Cinderella show us various stages, trajectories, and occasional tragedies of adolescents' emerging autonomy, while the Baker's and the Witch's struggles becoming and being parents encapsulate how disorderly and untidy parenting often is. Pediatricians and clinical bioethicists, who are often in a position to scrutinize the choices of parents and teens, should remember that parents and adolescents are almost always motivated by good intentions and doing the best that they can. Perhaps the best we can do is accompany them on their journey "into the woods."
为人父母是很困难的,尤其是为人父母的青少年,他们需要被给予选择,并被允许学习如何为自己做出选择的空间,即使这些选择会导致负面的后果。本文探讨了史蒂文·桑德海姆(Steven Sondheim)和詹姆斯·拉平(James Lapine) 1987年的音乐剧《走进森林》(Into the Woods)如何提供了为人父母的挑战、养育青少年的挑战、以及尽管每个人都尽了最大努力,但父母和家庭有多混乱的相关故事。《小红帽》、《长发公主》、《杰克》和《灰姑娘》的故事向我们展示了青少年自主发展的不同阶段、轨迹和偶尔发生的悲剧,而面包师和女巫成为父母的挣扎则体现了父母的无序和不整洁。儿科医生和临床生物伦理学家经常处于审查父母和青少年选择的位置,他们应该记住,父母和青少年几乎总是出于良好的动机,并尽其所能。也许我们能做的最好的事情就是陪伴他们踏上“走进森林”的旅程。
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引用次数: 0
The Trouble with Child Poverty 儿童贫困问题
4区 医学 Q1 Arts and Humanities Pub Date : 2023-09-01 DOI: 10.1353/pbm.2023.a909727
Mary Breheny
abstract: In research, in policy, and in the media, there is a clear focus on alleviating child poverty. Child poverty is cast as an urgent societal problem, in part reflecting recognition of the impact of early life circumstances on health across the life course. However, focusing on child poverty can have unintended consequences. First, calls to alleviate child poverty position children as a worthy investment in future population health, while adult poverty is represented as a misallocation of scarce resources. Second, children are positioned as blameless in talk about child poverty, whereas adults are viewed as potentially blameworthy for living in poverty. This ignores the ways early poverty shapes opportunities throughout the life course. These accounts are inconsistent: if a childhood of poverty shapes long-term outcomes, then poverty in adulthood cannot be an individual failing. Building arguments for poverty alleviation on social investment and personal responsibility ultimately supports rather than undermines the social structural arrangements that entrench inequalities. Recognizing the interconnectedness of families and communities and the destructiveness of poverty at every point in the life course has the potential to improve health in a way that can never be achieved by focusing solely on child poverty.
在研究、政策和媒体中,减轻儿童贫困都是一个明确的焦点。儿童贫困被视为一个紧迫的社会问题,这在一定程度上反映了人们认识到早期生活环境对整个生命过程中健康的影响。然而,关注儿童贫困可能会产生意想不到的后果。首先,减轻儿童贫困的呼吁将儿童视为对未来人口健康的一项有价值的投资,而将成人贫困视为对稀缺资源的不当分配。其次,在谈论儿童贫困时,儿童被定位为无可指责的,而成年人则被视为生活在贫困中的潜在罪魁祸首。这忽略了早期贫困在整个生命历程中塑造机会的方式。这些说法是不一致的:如果童年的贫困影响了长期的结果,那么成年后的贫困就不可能是个人的失败。在社会投资和个人责任的基础上建立减轻贫困的理由,最终会支持而不是破坏巩固不平等的社会结构安排。认识到家庭和社区的相互联系以及贫穷在生命过程中每个阶段的破坏性,就有可能以一种只注重儿童贫穷永远无法实现的方式改善健康。
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引用次数: 0
An Ethical Framework for Research Using Genetic Ancestry 利用遗传祖先进行研究的伦理框架
IF 1 4区 医学 Q1 Arts and Humanities Pub Date : 2023-03-01 DOI: 10.1353/pbm.0.0176
A. Lewis, Santiago J. Molina, P. Appelbaum, B. Dauda, A. Fuentes, Stephanie M. Fullerton, N. Garrison, Nayanika Ghosh, R. C. Green, Evelynn M. Hammonds, J. Jeff, David S. Jones, E. Kenny, P. Kraft, Madelyn Mauro, A. Ori, Aaron Panofsky, M. Sohail, B. Neale, D. Allen
ABSTRACT:A wide range of research uses patterns of genetic variation to infer genetic similarity between individuals, typically referred to as genetic ancestry. This research includes inference of human demographic history, understanding the genetic architecture of traits, and predicting disease risk. Researchers are not just structuring an intellectual inquiry when using genetic ancestry, they are also creating analytical frameworks with broader societal ramifications. This essay presents an ethics framework in the spirit of virtue ethics for these researchers: rather than focus on rule following, the framework is designed to build researchers’ capacities to react to the ethical dimensions of their work. The authors identify one overarching principle of intellectual freedom and responsibility, noting that freedom in all its guises comes with responsibility, and they identify and define four principles that collectively uphold researchers’ intellectual responsibility: truthfulness, justice and fairness, anti-racism, and public beneficence. Researchers should bring their practices into alignment with these principles, and to aid this, the authors name three common ways research practices infringe these principles, suggest a step-by-step process for aligning research choices with the principles, provide rules of thumb for achieving alignment, and give a worked case. The essay concludes by identifying support needed by researchers to act in accord with the proposed framework.
摘要:广泛的研究利用遗传变异模式来推断个体之间的遗传相似性,通常被称为遗传祖先。这项研究包括推断人类人口统计学历史,了解特征的遗传结构,以及预测疾病风险。研究人员在使用基因祖先时不仅构建了一个智力调查,他们还创建了具有更广泛社会影响的分析框架。本文以道德伦理的精神为这些研究人员提供了一个伦理框架:该框架旨在培养研究人员对其工作的伦理层面做出反应的能力,而不是关注规则遵循。作者确定了知识自由和责任的一个首要原则,指出自由的所有形式都伴随着责任,他们确定并定义了四个共同维护研究人员知识责任的原则:真实性、公正性和公平性、反种族主义和公共利益。研究人员应该使他们的实践与这些原则保持一致,为了帮助实现这一点,作者列举了研究实践违反这些原则的三种常见方式,建议了一个循序渐进的过程来使研究选择与原则保持一致的过程,提供了实现一致的经验法则,并给出了一个可行的案例。文章最后确定了研究人员根据拟议框架采取行动所需的支持。
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引用次数: 0
The Diversity of Institutions Conducting Biomedical Research 生物医学研究机构的多样性
IF 1 4区 医学 Q1 Arts and Humanities Pub Date : 2023-02-10 DOI: 10.1353/pbm.0.0175
J. Flier
Biomedical research in the United States has contributed enormously to science and human health and is conducted in several thousand institutions that vary widely in their histories, missions, operations, size, and cultures. Though these institutional differences have important consequences for the research they conduct, the organizational taxonomy of US biomedical research has received scant systematic attention. Consequently, many observers and even participants are surprisingly unaware of important distinguishing attributes of these diverse institutions. This essay provides a high-level taxonomy of the institutional ecosystem of US biomedical research; illustrates key features of the ecosystem through portraits of eight institutions of varying age, size, culture, and missions, each representing a much larger class exhibiting additional diversity; and suggests topics for future research into the research output of institutional types that will be required to develop novel approaches to improving the function of the ecosystem.
美国的生物医学研究对科学和人类健康做出了巨大贡献,并在数千个机构中进行,这些机构在历史、使命、业务、规模和文化方面差异很大。虽然这些制度差异对他们进行的研究有重要的影响,但美国生物医学研究的组织分类却很少得到系统的关注。因此,令人惊讶的是,许多观察者甚至参与者都没有意识到这些不同机构的重要区别属性。本文提供了美国生物医学研究制度生态系统的高级分类;通过对8个不同年龄、规模、文化和使命的机构的描述,说明了生态系统的主要特征,每个机构都代表了一个更大的类别,表现出额外的多样性;并提出了未来研究机构类型的研究成果的主题,这些研究成果将需要开发新的方法来改善生态系统的功能。
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引用次数: 0
The Demise of the AMA's Mission to Improve Public Health. AMA改善公共卫生使命的终止。
IF 1 4区 医学 Q1 Arts and Humanities Pub Date : 2023-01-01 DOI: 10.1353/pbm.2023.0017
John Abramson

Much has been written about the deplorable state of American health care, but rarely with the wealth of historical and political information packed into Peter Swenson's Disorder: A History of Reform, Reaction, and Money in American Medicine (2021). In this meticulously researched and comprehensive study of the role of organized medicine, particularly the American Medical Association (AMA) and affiliated state and county medical societies, Swenson provides detailed insight into the AMA's political evolution from a force advocating progressive reforms to a protective guild backed by powerful economic and ideological interests. Swenson addresses the conflicts leading to and arising from these movements, always with an eye on the profession's failure over the last century to fulfill its implicit social contract. Swenson describes the American medical disorder without fear or favor, including a public health system in disarray, defective government regulation of drugs, unchecked and concealed commercial influence on medical research, publications, and clinical guidelines. Swenson's hope is clear: that a progressively reformed AMA-combined with a broad coalition of concerned citizens and legislators-will lead the medical profession back to its rightful mission.

关于美国医疗保健的糟糕状况,人们写了很多文章,但很少有丰富的历史和政治信息被纳入彼得·斯文森的《美国医学的改革、反应和金钱史》(2021)。在这项对有组织的医学,特别是美国医学协会(AMA)及其附属州和县医学会的作用进行的精心研究和全面研究中,斯文森详细了解了美国医学协会的政治演变,从一支倡导进步改革的力量到一个由强大的经济和意识形态利益支持的保护性协会。斯文森谈到了导致和引发这些运动的冲突,他总是着眼于该行业在上个世纪未能履行其隐含的社会契约。斯文森毫无畏惧地描述了美国的医疗混乱,包括混乱的公共卫生系统、有缺陷的政府药品监管、对医学研究、出版物和临床指南的未经检查和隐瞒的商业影响。斯文森的希望很明确:一个逐步改革的AMA,加上关心此事的公民和立法者的广泛联盟,将带领医学界回到其合法的使命。
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引用次数: 0
Making and Managing New Biological Entities: conceptual, ontological, epistemological, and ethical aspects. 制造和管理新的生物实体:概念、本体论、认识论和伦理方面。
IF 1 4区 医学 Q1 Arts and Humanities Pub Date : 2023-01-01 DOI: 10.1353/pbm.2023.0020
Bjørn Hofmann

Novel biotechnologies produce new person-related biological entities, such as cell lines, organoids, and synthetic organisms, that tend to disrupt existing concepts, taxonomies, modes of evidence production, as well as moral norms and values. This raises the question of how we can manage these new person-related biological entities. This article identifies and analyzes key conceptual, ontological, epistemological, and ethical aspects of such entities in order to suggest how to make, manage, and regulate them. It argues that in order to avoid conceptual vagueness and taxonomic confusion, it is important to clarify how person-related biological entities relate to existing concepts and to make new concepts where necessary. Ontologically, we need to determine the thing- and person-likeness of such entities. Epistemically, we must provide measures to verify the characteristics of person-related biological entities and to provide high-quality knowledge of their implications (outcomes). And ethically, we must clarify the moral status, rights, and responsibility for and of the entities, and how they will change our norms and values. Addressing these issues up front may improve our making and managing of person-related biological entities.

新型生物技术产生了与人相关的新生物实体,如细胞系、类器官和合成生物体,这些生物实体往往会破坏现有的概念、分类法、证据产生模式以及道德规范和价值观。这就提出了我们如何管理这些新的与人相关的生物实体的问题。本文确定并分析了这些实体的关键概念、本体论、认识论和伦理方面,以建议如何制造、管理和规范它们。它认为,为了避免概念模糊和分类混乱,重要的是澄清与人相关的生物实体与现有概念的关系,并在必要时提出新的概念。在本体论上,我们需要确定这些实体的物与人的相似性。从认识上讲,我们必须提供措施来验证与人相关的生物实体的特征,并提供关于其影响(结果)的高质量知识。从伦理上讲,我们必须澄清实体的道德地位、权利和责任,以及它们将如何改变我们的规范和价值观。提前解决这些问题可能会改善我们对与人相关的生物实体的创建和管理。
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引用次数: 0
Historical Lessons on Vaccine Hesitancy: Smallpox, Polio, and Measles, and Implications for COVID-19. 疫苗犹豫的历史教训:天花、脊髓灰质炎和麻疹及其对COVID-19的影响
IF 1 4区 医学 Q1 Arts and Humanities Pub Date : 2023-01-01 DOI: 10.1353/pbm.2023.0008
J J Eddy, H A Smith, J E Abrams

Vaccine hesitancy continues to pose a formidable obstacle to increasing national COVID-19 vaccination rates in the US, but this is not the first time that American vaccination efforts have confronted resistance and apathy. This study examines the history of US vaccination efforts against smallpox, polio, and measles, highlighting persistent drivers of vaccine hesitancy as well as factors that helped overcome it. The research reveals that logistical barriers, negative portrayals in the media, and fears about safety stymied inoculation efforts as early as the 18th century and continue to do so. However, vaccine hesitancy has been markedly diminished when trusted community leaders have guided efforts, when ordinary citizens have felt personally invested in the success of the vaccine, and when vaccination efforts have been tied to broader projects to improve public health and social cohesion. Deliberately cultivating such factors could be an effective strategy for lessening opposition today, when COVID-19's distinctive characteristics make addressing vaccine hesitancy more urgent than it has ever been.

摘要:疫苗犹豫继续对提高美国全国新冠肺炎疫苗接种率构成巨大障碍,但这并不是美国疫苗接种工作第一次遇到阻力和冷漠。这项研究考察了美国针对天花、脊髓灰质炎和麻疹的疫苗接种工作的历史,强调了疫苗犹豫的持续驱动因素以及帮助克服这些因素的因素。研究表明,早在18世纪,后勤障碍、媒体的负面报道和对安全的担忧就阻碍了疫苗接种工作,并将继续如此。然而,当值得信赖的社区领导人指导疫苗接种工作时,当普通公民对疫苗的成功感到个人投入时,当疫苗接种工作与改善公共卫生和社会凝聚力的更广泛项目挂钩时,对疫苗的犹豫明显减少。今天,当新冠肺炎的独特特征使解决疫苗犹豫问题比以往任何时候都更加紧迫时,故意培养这些因素可能是减少反对的有效策略。
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引用次数: 0
On Antiscience and Antisemitism. 反科学和反犹主义
IF 1 4区 医学 Q1 Arts and Humanities Pub Date : 2023-01-01 DOI: 10.1353/pbm.2023.a902035
Peter Hotez

Recent surges in antivaccine activism and other antiscience trends now converge with rising antisemitism. During the COVID-19 pandemic, authoritarian elements from the far right in North America and Europe often invoked Nazi imagery to describe vaccinations or at times even blame the Jewish people for COVID-19 origins and vaccine profiteering. Such tropes represent throwbacks to the 14th century, when European Jews were persecuted during the time of the bubonic plague. This article provides both historical and recent perspectives on the links between antiscience and antisemitism, together with the author's personal experience as a Jewish vaccine scientist targeted by both dark forces. New approaches to uncoupling antisemitism from antiscience, while combating both, are essential for saving lives and preserving democratic values.

摘要:最近反疫苗运动和其他反科学趋势的激增,与反犹太主义的兴起相融合。在新冠肺炎大流行期间,来自北美和欧洲极右翼的威权分子经常援引纳粹的形象来描述疫苗接种,有时甚至指责犹太人是新冠肺炎的起源和疫苗牟利者。这些比喻代表了14世纪的倒退,当时欧洲犹太人在黑死病期间受到迫害。这篇文章提供了反科学和反犹太主义之间联系的历史和最新视角,以及作者作为犹太疫苗科学家的个人经历,这些经历都是黑暗势力的目标。将反犹太主义与反科学脱钩的新方法,同时打击两者,对于拯救生命和维护民主价值观至关重要。
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引用次数: 0
Elephants, Personhood, and Moral Status. 大象、人格和道德地位
IF 1 4区 医学 Q1 Arts and Humanities Pub Date : 2023-01-01 DOI: 10.1353/pbm.2023.0001
David DeGrazia

This essay uses the lens of moral status to explore the question of whether elephants ought to count as persons under the law. After distinguishing descriptive, moral, and legal concepts of personhood, the author argues that elephants are (descriptively) at least "borderline persons," justifying an attribution of full moral status and, thereby, a solid basis for legal personhood. A final section examines broad implications of elephant personhood.

文摘:本文从道德地位的角度探讨了大象是否应被视为法律规定的人的问题。在区分了人格的描述性、道德性和法律性概念后,作者认为大象(在描述性上)至少是“边缘人”,证明了完全道德地位的归属,从而为法人身份奠定了坚实的基础。最后一节探讨了大象人格的广泛含义。
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引用次数: 0
The Impact of Transmissible Microbes: How the Cystic Fibrosis Community Mobilized Against Cepacia. 传染性微生物的影响:囊性纤维化群落如何动员起来对抗Cepacia
IF 1 4区 医学 Q1 Arts and Humanities Pub Date : 2023-01-01 DOI: 10.1353/pbm.2023.0005
Rebecca Mueller

Long before COVID-19 made social distancing familiar, people with cystic fibrosis (CF) already practiced such behaviors. CF is held up as a classic example of genetic disease, yet people with CF are also susceptible to bacteria from the environment and from other CF patients. Starting in the 1980s, a bacterial epidemic in the CF population highlighted clashing priorities of connection, physical safety, and environmental protection. Policymakers ultimately called for the physical separation of people with CF from one another via recommendations that reconfigured the CF community. Simultaneously, medical researchers recognized that one highly transmissible CF pathogen called cepacia was being developed for environmental applications and got the EPA to limit cepacia's environmental deployment. Environmental regulations speak to the challenge of useful microbes that harm a minority, but CF cross-infection also involves legal implications for microbial and genetic discrimination, social consequences for CF communities, and ethical questions about balancing autonomy, harms, and benefits. As scientists increasingly study connections between host genetics, microbial genetics, and infectious risks, CF is a vital referent.

早在COVID-19使社交距离变得熟悉之前,囊性纤维化(CF)患者就已经采取了这种行为。CF被认为是一种典型的遗传性疾病,但CF患者也容易受到来自环境和其他CF患者的细菌的影响。从20世纪80年代开始,CF人群中的细菌流行凸显了连接、人身安全和环境保护的优先冲突。政策制定者最终呼吁通过重新配置CF社区的建议,将CF患者与其他人进行物理隔离。与此同时,医学研究人员认识到,一种名为cepacia的高传染性CF病原体正在被开发用于环境应用,并要求EPA限制cepacia在环境中的应用。环境法规对有害少数的有益微生物提出了挑战,但CF交叉感染也涉及微生物和基因歧视的法律含义,CF社区的社会后果,以及平衡自治,危害和利益的伦理问题。随着科学家越来越多地研究宿主遗传学、微生物遗传学和感染风险之间的联系,CF是一个重要的参考。
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引用次数: 0
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