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NIPT for adult-onset conditions: Australian NIPT users' views 成人发病的 NIPT:澳大利亚 NIPT 用户的观点。
IF 2.2 2区 哲学 Q2 ETHICS Pub Date : 2024-05-23 DOI: 10.1111/bioe.13310
India R. Marks, Katrien Devolder, Hilary Bowman-Smart, Molly Johnston, Catherine Mills

Noninvasive prenatal testing (NIPT) has become widely available in recent years. While initially used to screen for trisomies 21, 18, and 13, the test has expanded to include a range of other conditions and will likely expand further. This paper addresses the ethical issues that arise from one particularly controversial potential use of NIPT: screening for adult-onset conditions (AOCs). We report data from our quantitative survey of Australian NIPT users' views on the ethical issues raised by NIPT for AOCs. The survey ascertained support for NIPT for several traits and conditions including AOCs. Participants were then asked about their level of concern around implications of screening for AOCs for the future child and parent(s). Descriptive and comparative data analyses were conducted. In total, 109 respondents were included in data analysis. The majority of respondents expressed support for NIPT screening for preventable (70.9%) and nonpreventable AOCs (80.8%). Most respondents indicated concern around potential harmful impacts associated with NIPT for AOCs, including the psychological impact on the future child and on the parent(s). Despite this, the majority of participants thought that continuation of a pregnancy known to be predisposed to an AOC is ethically acceptable. The implications of these data are critically discussed and used to inform the normative claim that prospective parents should be given access to NIPT for AOCs. The study contributes to a body of research debating the ethical acceptability and regulation of various applications of NIPT as screening panels expand.

无创产前检测(NIPT)近年来已广泛普及。该检测最初用于筛查 21、18 和 13 三体综合征,现在已扩展到包括一系列其他病症,并有可能进一步扩展。本文探讨了 NIPT 的一个特别有争议的潜在用途所引发的伦理问题:成人发病条件(AOC)筛查。我们报告了对澳大利亚 NIPT 用户进行的定量调查数据,这些用户对针对 AOCs 的 NIPT 所引发的伦理问题发表了看法。调查确定了对包括 AOCs 在内的几种性状和疾病进行 NIPT 的支持度。然后,还询问了参与者对 AOCs 筛查对未来孩子和父母的影响的关注程度。对数据进行了描述性和比较性分析。共有 109 位受访者参与了数据分析。大多数受访者表示支持对可预防(70.9%)和不可预防(80.8%)的 AOC 进行 NIPT 筛查。大多数受访者对与 AOC NIPT 相关的潜在有害影响表示担忧,包括对未来孩子和父母的心理影响。尽管如此,大多数受访者认为,在伦理上可以接受继续妊娠,因为已知妊娠易导致 AOC。我们对这些数据的影响进行了批判性讨论,并以此为依据提出了规范性主张,即未来的父母应该有机会进行 AOC 的 NIPT 检测。随着筛查范围的扩大,NIPT 的各种应用在伦理上的可接受性和监管问题也在争论之中,本研究为这方面的研究做出了贡献。
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引用次数: 0
Four shades of paternalism in doctor–patient communication and their ethical implications 医患沟通中的四种家长作风及其伦理意义。
IF 2.2 2区 哲学 Q2 ETHICS Pub Date : 2024-05-21 DOI: 10.1111/bioe.13307
Anniken Fleisje

The present study aims to explore the forms paternalistic communication can take in doctor–patient interactions and how they should be considered from a normative perspective. In contemporary philosophical debate, the problem with paternalism is often perceived as either undermining autonomy (the autonomy problem) or the paternalist viewing their judgment as superior (the superiority problem). In either case, paternalism is problematized mainly in a general, theoretical sense. In contrast, this paper investigates specific doctor–patient encounters, revealing distinct types of paternalistic communication. For this study, I reviewed videorecorded encounters from a Norwegian hospital to detect paternalism—specifically, doctors overriding patients' expressed preferences, presumably to benefit or protect the patients. I identified variations in paternalistic communication styles—termed paternalist modes—which I categorized into four types: the fighter, the advocate, the sympathizer, and the fisher. Drawing on these findings, I aim to nuance the debate on paternalism. Specifically, I argue that each paternalist mode carries its own normative implications and that the autonomy and the superiority problems manifest differently across the modes. Furthermore, by illustrating paternalism in communication through real-life cases, I aim to reach a more comprehensive understanding of what we mean by paternalistic doctors.

本研究旨在探讨家长式沟通在医患互动中可能采取的形式,以及应如何从规范的角度考虑这些形式。在当代哲学辩论中,家长式作风的问题通常被认为是损害了自主性(自主性问题),或者是家长式作风者将自己的判断视为优越(优越性问题)。无论哪种情况,家长制都主要是在一般的理论意义上被提出问题。与此相反,本文调查了具体的医患接触,揭示了家长式沟通的不同类型。在这项研究中,我查看了一家挪威医院的视频录像,以发现家长式沟通--具体来说,就是医生凌驾于患者所表达的偏好之上,可能是为了使患者受益或保护患者。我发现了家长式沟通风格的变化--即家长式沟通模式,并将其分为四种类型:斗士、倡导者、同情者和渔夫。根据这些发现,我旨在使关于家长式作风的辩论变得更加细致。具体而言,我认为每种家长制模式都有其自身的规范意义,自主性和优越性问题在不同模式中的表现也不尽相同。此外,我还通过现实生活中的案例来说明沟通中的家长式作风,旨在更全面地理解家长式医生的含义。
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引用次数: 0
'Displaced in the name of Religion': Girl child abuse and community healthcare workers' response to women crying for help in IDP camps in North Central, Nigeria. 以宗教的名义流离失所":在尼日利亚中北部地区的国内流离失所者营地中,女童遭受虐待和社区医疗工作者对妇女呼救的反应。
IF 2.2 2区 哲学 Q2 ETHICS Pub Date : 2024-05-21 DOI: 10.1111/bioe.13305
Favour Chukwuemeka Uroko, Mary Jerome Obiorah

This study examines girl child abuse in an internally displaced people's camp in north-central Nigeria and the response of community health workers. The conflict in Benue State is caused by religious differences between the natives (Tiv people) and the invading Fulani herdsmen. During these conflicts, women and girls were displaced, and they were kept in internally displaced persons (IDPs) located in different parts of the state. Literature has been extensively written on internal displacement in Nigeria, but none has been able to elucidate the health needs of girls and the various abuses girls and women are suffering in IDP camps. In this study, literature was extended (1) to explore the environment of the girl child in IDP camps, (2) to identify reasons for the abuse of the girl child in IDP camps, (3) to investigate the impacts of the abuse on the girl child in IDP camps and (4) to investigate how healthcare workers could be used to alleviate the plight of girl children in IDP camps. This is a qualitative case study, with data obtained from relevant academic literature and personal observation. The data were analysed using content analysis. Findings reveal that the girl child is suffering from psychological, economic and health challenges due to the various forms of abuse they are going through. Following the devastation in Benue State, healthcare workers from the community relocated to neighbouring states. There is a need to recall those healthcare workers and provide them with the necessary materials to assist girls in IDP camps. Recommendations are discussed.

本研究探讨了尼日利亚中北部一个境内流离失所者营地中女童遭受虐待的情况以及社区卫生工作者的应对措施。贝努埃州的冲突是由当地人(蒂夫人)和入侵的富拉尼牧民之间的宗教分歧引起的。在这些冲突中,妇女和女童流离失所,被安置在该州不同地区的境内流离失所者(IDPs)中。关于尼日利亚境内流离失所问题的文献资料很多,但没有一篇能够阐明女童的健康需求以及女童和妇女在境内流离失所者营地遭受的各种虐待。本研究对文献进行了扩展:(1) 探讨境内流离失所者营地中女童所处的环境;(2) 找出境内流离失所者营地中女童遭受虐待的原因;(3) 调查虐待对境内流离失所者营地中女童的影响;(4) 调查如何利用医护人员来缓解境内流离失所者营地中女童的困境。这是一项定性案例研究,数据来自相关学术文献和个人观察。采用内容分析法对数据进行了分析。研究结果显示,由于遭受各种形式的虐待,女童在心理、经济和健康方面都面临挑战。贝努埃州发生灾难后,该社区的医护人员迁往邻州。有必要召回这些医疗工作者,并向他们提供必要的材料,以帮助境内流离失所者营地中的女童。讨论了相关建议。
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引用次数: 0
Rawls, race, and the 20th-century bioethics 罗尔斯、种族与 20 世纪生命伦理学。
IF 2.2 2区 哲学 Q2 ETHICS Pub Date : 2024-05-20 DOI: 10.1111/bioe.13301
Akshay Pendyal
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引用次数: 0
Reply to Rawls's, race, and 20th century bioethics 对罗尔斯、种族和 20 世纪生命伦理学的答复。
IF 2.2 2区 哲学 Q2 ETHICS Pub Date : 2024-05-20 DOI: 10.1111/bioe.13298
Robert Baker
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引用次数: 0
New perspectives on women's reproductive rights 妇女生殖权利的新视角。
IF 2.2 2区 哲学 Q2 ETHICS Pub Date : 2024-05-20 DOI: 10.1111/bioe.13308
Mansoureh Moaya, Shadab Shahali, Minoor Lamyian, Alireza Milanifar, Seyed-Mohammad Azin
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引用次数: 0
Transnational review on the use of information and communication technologies and technoscience in healthcare: Their impact on the autonomy and governance of individuals and communities. 关于在医疗保健领域使用信息和传播技术及技术科学的跨国审查:它们对个人和社区的自主权和管理的影响。
IF 2.2 2区 哲学 Q2 ETHICS Pub Date : 2024-05-18 DOI: 10.1111/bioe.13303
Concepción Unanue Cuesta

The impact and use of Information and Communication Technologies (ICTs) in healthcare settings has been increasing since 2019. This is greatly due to the COVID-19 pandemic. But beyond accommodating an extraordinary and complex situation in terms of healthcare services, or beyond replacing personalised care delivered by healthcare professionals (HCPs), has there been a process of information and consultation for communities and HCPs? Do we have the basic requirements needed to make such use commonplace in health care? What will the impact be on communities and their governance? Have we arrived here by consensus or by imposition? Our purpose has been to conduct a transnational analysis by approaching communities, social actors, and healthcare professionals in three territories in a pilot study following a qualitative methodology. The aim being to discover the potential impact of such measures beyond the right to health and if such measures are compatible with the purpose of population settling in rural areas. Furthermore, to identify if this entails a conflict of value and priorities or if we need new ethical reviews both for communities and healthcare professionals.

自 2019 年以来,信息和通信技术(ICTs)在医疗机构中的影响和使用不断增加。这在很大程度上归功于 COVID-19 大流行。但是,除了在医疗保健服务方面适应特殊而复杂的情况,或取代医疗保健专业人员(HCPs)提供的个性化护理之外,社区和医疗保健专业人员是否有一个信息和咨询的过程?我们是否具备在医疗保健中普及这种使用所需的基本要求?这将对社区及其管理产生什么影响?我们是达成共识还是强加于人?我们的目的是在一项采用定性方法的试点研究中,通过接触三个地区的社区、社会行动者和医疗保健专业人员,进行跨国分析。目的是发现这些措施对健康权的潜在影响,以及这些措施是否符合农村地区人口定居的目的。此外,还要确定这是否会引起价值和优先事项的冲突,或者我们是否需要对社区和医疗专业人员进行新的伦理审查。
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引用次数: 0
Ethical challenges in health care during collective hunger strikes in public or occupied spaces 在公共场所或被占领场所集体绝食期间的医疗保健伦理挑战。
IF 2.2 2区 哲学 Q2 ETHICS Pub Date : 2024-05-17 DOI: 10.1111/bioe.13306
Dominik Haselwarter, Katja Kuehlmeyer, Verina Wild

Public collective hunger strikes take place in complex social and political contexts, require medical attention and present ethical challenges to physicians. Empirical research, the ethical debate to date and existing guidelines by the World Medical Association focus almost exclusively on hunger strikes in detention. However, the public space differs substantially with regard to the conditions for the provision of health care and the diverse groups of healthcare providers or stakeholders involved. By reviewing empirical research on the experience of health professionals with public collective hunger strikes, we identified the following ethical challenges: (1) establishment of a trustful physician–striker relationship, (2) balancing of medico-ethical principles in medical decision-making, (3) handling of loyalty conflicts and (4) preservation of professional independence and the risk of political instrumentalization. Some of these challenges have already been described and discussed, yet not contextualized for public collective strikes, while others are novel. The presence of voluntary physicians may offer opportunities for a trustful relationship and, hence, for ethical treatment decisions. According to our findings, it requires more attention to how to realise autonomous medical decisions in the complex context of a dynamic, often unstructured and politically charged setting, which ethical norms should shape the professional role of voluntary physicians, and what is the influence of the hunger strikers' collective on individual healthcare decisions. Our article can serve as a starting point for further ethical discussion. It can also provide the basis for the development of potential guidelines to support health professionals involved in public collective hunger strikes.

公众集体绝食发生在复杂的社会和政治背景下,需要医疗关注,并对医生提出了伦理挑战。经验研究、迄今为止的伦理辩论和世界医学协会的现有指导方针几乎完全侧重于拘留所中的绝食。然而,在提供医疗服务的条件以及所涉及的不同医疗服务提供者或利益相关者群体方面,公共空间存在很大差异。通过回顾有关医疗专业人员参与公共集体绝食行动经验的实证研究,我们发现了以下伦理挑战:(1)建立医生与绝食者之间的信任关系,(2)在医疗决策中平衡医学伦理原则,(3)处理忠诚冲突,以及(4)维护专业独立性和政治工具化风险。其中一些挑战已被描述和讨论过,但没有结合公共集体罢工的背景,而另一些挑战则是新的。自愿医生的存在可能会为建立信任关系提供机会,从而为做出合乎道德的治疗决定提供机会。根据我们的研究结果,需要更多地关注如何在一个动态的、往往是非结构化的、充满政治色彩的复杂环境中实现自主的医疗决策,哪些道德规范应塑造志愿医生的专业角色,以及绝食者集体对个人医疗决策的影响。我们的文章可以作为进一步伦理讨论的起点。它还可以为制定潜在的指导方针提供依据,以支持参与公共集体绝食斗争的医疗专业人员。
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引用次数: 0
Bioethical challenges in postwar development aid: The Rwandan case study. 战后发展援助中的生物伦理挑战:卢旺达案例研究。
IF 2.2 2区 哲学 Q2 ETHICS Pub Date : 2024-05-17 DOI: 10.1111/bioe.13304
Łukasz Wiktor, Maria Damps, Grace Kansayisa, Szymon Pietrzak, Bartłomiej Osadnik

This article considers aspects of a development aid that provides medical support to strengthen pediatric orthopedics in Rwanda. We present part of the Afriquia foundation work, a nonprofit foundation from Poland involved in supporting the medical sector in Rwanda as a sign of global solidarity and the human right to health. The main foundation's activity is the treatment of orthopedic problems among Rwandan citizens. We present a case study of two children under the care of the Afiquia foundation. 11-year-old Seraphine treated due to the consequences of right tibia osteomyelitis and 11-year-old Lavi suffering from osteogenesis imperfecta. Both children were treated surgically in Poland due to Rwanda's lack of treatment possibilities. After the applied treatment, Seraphine walks correctly without crutches and can attend school and thrive among her peers. Lavi has not sustained any fragility fracture since the surgery in Poland. He is healthy and constantly ongoing his rehabilitation including gait training. The described cases initiated development aid in Rwanda, supplying hospitals with orthopedic implants and training medical staff. The growing number of humanitarian crises across the globe and the people affected requires increasing organizations involved in providing relief. The emphasis should be on global education, aiming to make the recipients reflect and prepare them to face humanitarian crises.

本文探讨了为加强卢旺达小儿矫形外科而提供医疗支持的发展援助的各个方面。我们介绍了 Afriquia 基金会的部分工作,这是一个来自波兰的非营利性基金会,参与支持卢旺达的医疗部门,以体现全球团结和人类的健康权。该基金会的主要活动是治疗卢旺达公民的矫形问题。我们将介绍由阿菲基亚基金会照顾的两名儿童的案例研究。11岁的塞拉芬(Seraphine)因右胫骨骨髓炎而接受治疗,11岁的拉维(Lavi)患有成骨不全症。由于卢旺达缺乏治疗条件,这两名儿童都在波兰接受了手术治疗。经过治疗,塞拉芬不用拐杖就能正常行走,可以上学,在同龄人中茁壮成长。自从在波兰接受手术以来,拉维没有发生过任何脆性骨折。他身体健康,并不断进行康复训练,包括步态训练。上述案例启动了卢旺达的发展援助,为医院提供矫形植入物并培训医务人员。全球人道主义危机日益增多,受影响的人也越来越多,这就需要越来越多的组织参与救援。重点应放在全球教育上,目的是让受援者进行反思,为应对人道主义危机做好准备。
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引用次数: 0
Mental patient—Psychiatric ethics from a patient's perspective By  Abigail Gosselin, Cambridge, MA: The MIT Press.  2022.  308pp. $45.00 (Paperback), ISBN: 9780262544313 精神病人--从病人的角度看精神伦理学 Abigail Gosselin 著,马萨诸塞州剑桥:麻省理工学院出版社。2022.308页。45.00美元(平装本),ISBN:9780262544313
IF 2.2 2区 哲学 Q2 ETHICS Pub Date : 2024-05-15 DOI: 10.1111/bioe.13309
Sam Wilkinson
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引用次数: 0
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