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Retrospective Radiology Research: Do We Need Informed Patient Consent? 回顾性放射学研究:我们需要患者知情同意吗?
IF 1.8 3区 哲学 Q2 ETHICS Pub Date : 2024-08-19 DOI: 10.1007/s11673-024-10368-6
Yfke Ongena, Thomas C Kwee, Derya Yakar, Marieke Haan

While knowledge of the population's view on the need for informed consent for retrospective radiology research may provide valuable insight into how an optimal balance can be achieved between patient rights versus an expedited advancement of radiology science, this is a topic that has been ignored in the literature so far. To investigate the view of the general population, survey data were collected from 2407 people representative of the Dutch population. The results indicate that for non-commercial institutions, especially hospitals (97.4 per cent), respondents agree with the retrospective use of imaging data, although they generally indicate that their explicit consent is required. However, most respondents (63.5 per cent) would never allow commercial firms to retrospectively use their imaging data. When including only respondents who completed the minimally required reading time of 12.3 s to understand the description about retrospective radiology research given in the survey (n = 770), almost all (98.9 per cent) mentioned to have no objections for their imaging data to be used by hospitals for retrospective research, with 57.9 per cent indicating their consent to be required and 41.0 per cent indicating that explicit patient consent to be unnecessary. We conclude that the general population permits retrospective radiology research by hospitals, and a substantial proportion indicates explicit patient consent to be unnecessary when understanding what retrospective radiology research entails. However, the general population's support for the unrestricted retrospective use of imaging data for research purposes without patient consent decreases for universities not linked to hospitals, other non-commercial institutions, government agencies, and particularly commercial firms.

虽然了解民众对回顾性放射学研究是否需要知情同意的看法,可以为如何在患者权益与加快放射学科学发展之间实现最佳平衡提供有价值的见解,但迄今为止,这是一个被文献忽略的话题。为了调查普通民众的观点,我们收集了具有荷兰代表性的 2407 人的调查数据。结果表明,对于非商业机构,尤其是医院(97.4%),受访者同意回顾性使用影像数据,尽管他们普遍表示需要征得他们的明确同意。然而,大多数受访者(63.5%)决不允许商业公司追溯使用他们的成像数据。如果只包括完成最低要求的阅读时间(12.3 秒)以理解调查中关于放射学回顾性研究描述的受访者(n = 770),几乎所有受访者(98.9%)都表示不反对医院将其影像数据用于回顾性研究,其中 57.9% 的受访者表示需要征得他们的同意,41.0% 的受访者表示无需征得患者的明确同意。我们的结论是,普通民众允许医院进行回顾性放射学研究,而且在了解回顾性放射学研究的内涵后,相当一部分人表示无需征得患者的明确同意。然而,对于与医院无关联的大学、其他非商业机构、政府机构,尤其是商业公司,普通民众对不经患者同意为研究目的不受限制地回顾性使用影像数据的支持率有所下降。
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引用次数: 0
"A Picture Paints a Thousand Words"-A Systematic Review of the Ethical Issues of Prenatal Ultrasound. "一图绘千言"--产前超声波伦理问题系统回顾。
IF 1.8 3区 哲学 Q2 ETHICS Pub Date : 2024-08-19 DOI: 10.1007/s11673-024-10360-0
M Favaretto, M Rost

Prenatal ultrasound is a non-invasive diagnostic examination. Despite the recognized diagnostic value, this technology raises complex ethical questions. The aim of this study is to provide a comprehensive analysis that coherently maps the ethical challenges raised by prenatal ultrasound examination, both 2D and 3D. We performed a systematic literature review. Six databases were systematically searched. The results highlight how concerns related to beneficence, informed consent, and autonomy are mainly related to routine use of prenatal ultrasound in the clinical context, while considerations linked to overmedicalization of pregnancy, discrimination, and fetal ontology were often reported in relation to the impact ultrasound is having on medicine and society. Ethical issues in the context of pre-abortion ultrasound, obstetric practices in low-income settings, and keepsake ultrasound imaging were also greatly discussed. Since prenatal ultrasound practices critically impact pregnant people's autonomy and their role within pregnancy, we conclude that information providing strategies should be developed to appropriately inform pregnant people about the nature, purpose, risks, and choices revolving around prenatal ultrasound. In addition, as it is becoming increasingly difficult to separate the social and clinical dimensions of prenatal ultrasound, future research should focus on examining if and how such dimensions should be reconciled.

产前超声波检查是一种无创诊断检查。尽管该技术具有公认的诊断价值,但也引发了复杂的伦理问题。本研究旨在提供全面的分析,连贯地描绘产前二维和三维超声检查所带来的伦理挑战。我们进行了系统的文献综述。我们系统地检索了六个数据库。结果凸显了与获益、知情同意和自主权相关的问题主要与产前超声在临床中的常规使用有关,而与妊娠过度医疗化、歧视和胎儿本体论相关的问题则经常与超声对医学和社会的影响有关。堕胎前超声、低收入环境下的产科实践以及超声成像纪念品等方面的伦理问题也得到了广泛的讨论。由于产前超声波检查对孕妇的自主权及其在妊娠中的角色有着至关重要的影响,因此我们得出结论,应制定信息提供策略,让孕妇适当了解产前超声波检查的性质、目的、风险和选择。此外,由于产前超声波检查的社会性和临床性越来越难以分开,未来的研究应侧重于探讨是否以及如何协调这两个方面。
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引用次数: 0
Decision-Making Capacity and Authenticity. 决策能力与真实性。
IF 1.8 3区 哲学 Q2 ETHICS Pub Date : 2024-08-14 DOI: 10.1007/s11673-024-10372-w
Tim Aylsworth, Jake Greenblum

There is wide consensus among bioethicists about the importance of autonomy when determining whether or not a patient has the right to refuse life-saving treatment (LST). In this context, autonomy has typically been understood in terms of the patient's ability to make an informed decision. According to the traditional view, decision-making capacity (DMC) is seen as both necessary and sufficient for the right to refuse LST. Recently, this view has been challenged by those who think that considerations of authenticity and putative counterexamples should lead us to revise the traditional account. In this paper, we respond to these revisionist arguments, and we defend the traditional view according to which we have autonomy-based reasons to respect a patient's decision to refuse LST if and only if she has DMC.

在确定病人是否有权拒绝拯救生命的治疗(LST)时,生命伦理学者对自主权的重要性达成了广泛共识。在这方面,自主权通常被理解为病人做出知情决定的能力。根据传统观点,决策能力(DMC)被认为是拒绝 LST 权利的必要条件和充分条件。最近,这一观点受到了一些人的质疑,他们认为,真实性和可能存在的反例等因素应促使我们对传统观点进行修正。在本文中,我们对这些修正论点做出了回应,并为传统观点进行了辩护,根据传统观点,如果且只有当病人拥有 DMC 时,我们才有基于自主权的理由尊重她拒绝 LST 的决定。
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引用次数: 0
Perspectives on Spare Embryos amongst IVF users: An Exploratory Study from a Selected District of the Southern Indian State of Karnataka. 试管婴儿用户对备用胚胎的看法:印度南部卡纳塔克邦选定地区的探索性研究。
IF 1.8 3区 哲学 Q2 ETHICS Pub Date : 2024-07-29 DOI: 10.1007/s11673-024-10359-7
Salik Ansari, Ravi Vaswani

Perspectives of IVF users on their spare embryos is a less explored subject in the Indian context despite the country's population and abundance of IVF clinics. We conducted a qualitative study using in-depth interviews in a selected district of the Indian state of Karnataka. Seven individuals were recruited independently of any assistance from an IVF clinic. The interviews explored participants' knowledge and perception of the spare embryos using a set of guiding questions exploring the theme of the informed consent process, views on research, preferences for embryo donation, the role of family and the dynamics of decision-making, amongst other things. The interviews were qualitatively analysed using Corbin and Strauss's grounded theory approach. Our findings reveal that the participants do not learn about the prospects of spare embryos from the very start of their IVF journeys, and they may not be informed about the various options available to decide the fate of the spare embryos. Irrespective of their views on research and moral perceptions of embryos, participants expressed a sense of responsibility and ownership towards their embryos and a general reluctance to donate them. Our findings have implications for guiding future inquiries on this subject, which can better the informed consent process and unravel the role of ownership in the ethics of spare embryos in the Indian context.

尽管印度人口众多,试管婴儿诊所林立,但印度试管婴儿用户对其剩余胚胎的看法却鲜有人问津。我们在印度卡纳塔克邦的一个选定地区开展了一项深入访谈的定性研究。在没有试管婴儿诊所协助的情况下,我们招募了七名参与者。访谈使用一组指导性问题探讨了参与者对备用胚胎的了解和看法,这些问题的主题包括知情同意程序、对研究的看法、对胚胎捐赠的偏好、家庭的作用和决策动态等。我们采用科尔宾和斯特劳斯的基础理论方法对访谈进行了定性分析。我们的研究结果表明,参与者并不是从试管婴儿旅程的一开始就了解备用胚胎的前景,他们可能并不了解决定备用胚胎命运的各种选择。无论参与者对胚胎研究和道德观念的看法如何,他们都表示对自己的胚胎有一种责任感和主人翁感,并且普遍不愿意捐献胚胎。我们的研究结果对指导今后有关这一主题的调查具有重要意义,它可以改善知情同意程序,并揭示所有权在印度备用胚胎伦理中的作用。
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引用次数: 0
Consideration of Sustainability When Approving Human Medical Research-A Scoping Review. 批准人类医学研究时对可持续性的考虑--范围审查。
IF 1.8 3区 哲学 Q2 ETHICS Pub Date : 2024-07-25 DOI: 10.1007/s11673-024-10365-9
Tony Skapetis, Bernadette Nicholl, Kellie Hansen

This article attempts to highlight the importance of including research sustainability as imperative when assessing human medical research in terms of ethical principles. Using a scoping review of recent literature, the complexity of research sustainability is highlighted with key themes and concepts surrounding this important topic being recognized and discussed. An overall paucity of guidance documents was identified and recommendations have been made to practically address this deficiency. An example of a research sustainability evaluation tool which is currently being piloted has been provided for possible adaptation and use by Ethics Committees and Institutional Review Boards to bolster the concept and inclusion of sustainability during the research approval process.

本文试图强调,在根据伦理原则评估人类医学研究时,必须将研究的可持续性纳入其中。通过对近期文献进行范围界定,强调了研究可持续性的复杂性,并对围绕这一重要主题的关键主题和概念进行了确认和讨论。我们发现指导性文件总体不足,并提出了切实解决这一不足的建议。还提供了一个目前正在试行的研究可持续性评估工具的例子,供伦理委员会和机构审查委员会在研究审批过程中调整和使用,以加强可持续性的概念并将其纳入审批过程。
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引用次数: 0
Honesty in Human Subject Research. 以人为研究对象的诚信。
IF 1.8 3区 哲学 Q2 ETHICS Pub Date : 2024-07-24 DOI: 10.1007/s11673-024-10357-9
Sungwoo Um

In this paper, I discuss the ethical issues related to deception in human subject research in terms of honesty. First, I introduce the background and suggest the conception of honesty that understands it as involving respect for the right not to be deceived (RND). Next, I examine several ways to address the ethical issues of deceptive elements in the human subject research and show why they fail to adequately meet the demand of honesty. I focus on how to make an honest research plan and examine after participation and before participation phases in turn. Then I conclude by suggesting possible strategies to minimize dishonesty in human subject research.

在本文中,我将从 "诚实 "的角度讨论与人类课题研究中的欺骗行为有关的伦理问题。首先,我介绍了相关背景,并提出了 "诚实 "的概念,即把 "诚实 "理解为对 "不被欺骗的权利"(RND)的尊重。接下来,我探讨了解决人类课题研究中欺骗因素伦理问题的几种方法,并说明了为什么这些方法不能充分满足诚实的要求。我的重点是如何制定诚实的研究计划,并依次考察参与后和参与前阶段。最后,我提出了在人类课题研究中尽量减少不诚实行为的可行策略。
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引用次数: 0
Genome Editing Dilemma: Navigating Dual-Use Potential and Charting the Path Forward. 基因组编辑的两难选择:探索双重用途的可能性并规划前进的道路。
IF 1.8 3区 哲学 Q2 ETHICS Pub Date : 2024-07-24 DOI: 10.1007/s11673-024-10358-8
Ana Ruxandra Badea, Oliver Feeney

Contemporary genome editing techniques have made genomic intervention-from microorganism to human-more accessible, easier to use, and more accurate than previous methods. We argue that, notwithstanding its merits in treating and preventing disease in humans, genome editing represents a potential threat for domestic and international security, requiring an integrated approach in regulating, detecting, preventing, and mitigating the risk of its use for malicious purposes. Despite the global regulatory ambitions of the 2021 WHO framework, we see insufficient attention given to the future prospect of dual-use genomic technology. Drawing parallels with the nuclear field, we suggest tentative practical steps for a way forward in dealing with genome editing technologies, such as: 1) adapting national (bio)security and defence strategies to include genome editing as a possible threat (with conceivable WMD potential); 2) enhancing the international dialogue on genome editing and raising the issue at the highest level; 3) working towards a global, legally binding verification mechanism; 4) tracking genome editing technologies.

当代基因组编辑技术使基因组干预--从微生物到人类--比以前的方法更容易获得、更容易使用、更准确。我们认为,尽管基因组编辑在治疗和预防人类疾病方面有其优点,但它对国内和国际安全构成了潜在威胁,需要采取综合方法来监管、检测、预防和降低其被用于恶意目的的风险。尽管 2021 年世卫组织框架具有全球监管的雄心,但我们认为对双重用途基因组技术的未来前景关注不够。借鉴核领域的经验,我们初步提出了处理基因组编辑技术的切实可行的步骤,如1) 调整国家(生物)安全和防卫战略,将基因组编辑作为一种可能的威胁(可能具有大规模杀伤性武器的潜力);2) 加强关于基因组编辑的国际对话,并在最高级别提出这一问题;3) 努力建立一个具有法律约束力的全球性核查机制;4) 跟踪基因组编辑技术。
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引用次数: 0
Family-Oriented Living Organ Donation in Bangladesh: A Bioethical Defence. 孟加拉国以家庭为导向的活体器官捐赠:生物伦理辩护。
IF 1.8 3区 哲学 Q2 ETHICS Pub Date : 2024-07-22 DOI: 10.1007/s11673-024-10361-z
S Siraj

This study focuses on issues related to living organ donation for transplantation in Bangladesh. The policy and practice of living organ donation for transplantation in Bangladesh is family-oriented: close relatives (legal and genetic) are the only ones allowed to be living donors. Unrelated donors, altruistic donors (directed and non-directed), and paired/pooled or non-directed altruistic living donor chains-as many of these are implemented in other countries-are not legally allowed to serve as living donors in Bangladesh. This paper presents normative arguments explaining why the family-oriented nature of regulations and practices surrounding living organ donation for transplantation is essential for Bangladesh. In this article, I specifically argue that if the Bangladesh government revises the current biomedical policy robustly beyond relatives and allows unrelated donors to donate organs legally, this may foster organ selling due to the poverty and corruption problems in Bangladesh. The family-oriented requirement of the living organ donation policy and practice is defensible and morally justifiable as it preserves common notions of the family unit and family bonding in Bangladesh. Maintaining the current living-donation regulations and promoting deceased donation is the way forward, as this safely preserves the family values, protects against organ selling, and increases access to organ transplantation.

本研究侧重于与孟加拉国活体器官移植相关的问题。孟加拉国活体器官移植捐赠的政策和实践以家庭为导向:近亲属(合法和遗传)是唯一被允许的活体捐赠者。在孟加拉国,非亲属捐献者、利他捐献者(定向和非定向)、配对/集合或非定向利他活体捐献者链(在其他国家有许多这样的链条)在法律上都不允许作为活体捐献者。本文提出了规范性论点,解释了为什么围绕活体器官移植捐赠的法规和实践的家庭导向性质对孟加拉国至关重要。在这篇文章中,我特别提出,如果孟加拉国政府修改现行的生物医学政策,将亲属之外的捐赠者排除在外,并允许无亲属关系的捐赠者合法捐赠器官,那么由于孟加拉国的贫困和腐败问题,这可能会助长器官买卖。活体器官捐献政策和实践中以家庭为导向的要求是站得住脚的,在道义上也是合理的,因为它维护了孟加拉国家庭单位和家庭纽带的普遍观念。维持现行的活体捐献条例并促进死者捐献是未来的发展方向,因为这可以安全地维护家庭价值观,防止器官买卖,并增加器官移植的机会。
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引用次数: 0
Attitudes Towards Non-directiveness Among Medical Geneticists in Germany and Switzerland. 德国和瑞士医学遗传学家对非指导性的态度。
IF 1.8 3区 哲学 Q2 ETHICS Pub Date : 2024-07-22 DOI: 10.1007/s11673-024-10355-x
J Eichinger, B S Elger, S McLennan, I Filges, I Koné

The principle of non-directiveness remains an important tenet in genetics. However, the concept has encountered growing criticism over the last two decades. There is an ongoing discussion about its appropriateness for specific situations in genetics, especially in light of recent significant advancements in genetic medicine. Despite the debate surrounding non-directiveness, there is a notable lack of up-to-date international research empirically investigating the issue from the perspective of those who actually do genetic counselling. Addressing this gap, our article delves into the viewpoints and experiences of medical geneticists in Germany and Switzerland. Twenty qualitative interviews were analysed employing reflexive thematic analysis. Participants' responses revealed substantial uncertainties and divergences in their understanding and application of the concept. It seems to cause distress since many geneticists stated that the principle was difficult to put into clinical practice and was no longer ethically justified given the increasing likelihood of therapeutic implications resulting from genomic testing outcomes. The insights provided by our qualitative empirical study accord with the ongoing theoretical debate regarding the definition, legitimacy, and feasibility of the principle. An adequately nuanced understanding and application of non-directiveness seems crucial to circumvent the risks inherent in the principle, while promoting patient autonomy and beneficence.

非指导性原则仍然是遗传学的一个重要信条。然而,在过去二十年中,这一概念受到了越来越多的批评。人们一直在讨论非指导性原则是否适合遗传学中的特定情况,特别是考虑到遗传医学最近取得的重大进展。尽管围绕 "非指导性 "的争论不绝于耳,但从实际从事遗传咨询工作的人的角度对这一问题进行实证调查的最新国际研究却明显不足。针对这一空白,我们的文章深入研究了德国和瑞士医学遗传学家的观点和经验。我们采用反思性主题分析法对 20 个定性访谈进行了分析。从参与者的回答中可以看出,他们对这一概念的理解和应用存在很大的不确定性和分歧。这似乎造成了困扰,因为许多遗传学家表示,这一原则很难应用于临床实践,而且鉴于基因组检测结果越来越有可能产生治疗影响,这一原则在伦理上已不再合理。我们的定性实证研究提供的见解与目前关于该原则的定义、合法性和可行性的理论辩论相吻合。充分细致地理解和应用非指导性原则似乎是规避该原则固有风险的关键,同时还能促进患者的自主性和受益性。
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引用次数: 0
Human Brain Organoid Research and Applications: Where and How to Meet Legal Challenges? 人脑类器官的研究与应用:在哪里以及如何应对法律挑战?
IF 1.8 3区 哲学 Q2 ETHICS Pub Date : 2024-07-05 DOI: 10.1007/s11673-024-10349-9
M Kataoka, T-L Lee, T Sawai

An ethical and legal framework is needed to regulate the rapidly developing human brain organoid research field properly. However, considering the legal issues involved in human brain organoid research remains underdeveloped and scattered. This article reviews the legal issues of human brain organoid research, grouping them into the following five broad themes: (1) consciousness, (2) legal status, (3) consent, (4) ownership, and (5) transplantation. The issues in each topic include both the urgent (e.g., appropriate forms of consent) and the speculative (e.g., protection of conscious human brain organoids). Therefore, we have attempted to be as explicit as possible about the timescale within which each issue will be realized and to prioritize each. Examining these issues has revealed legal issues specific to human brain organoid research and issues common to research in other fields. Further discussion of human brain organoid research from a legal perspective is needed in the future, considering discussions in related fields.

要对快速发展的类人脑器官研究领域进行适当监管,需要一个伦理和法律框架。然而,对人脑类器官研究中涉及的法律问题的思考仍然不够深入和分散。本文回顾了类人脑器官研究的法律问题,将其归纳为以下五大主题:(1) 意识,(2) 法律地位,(3) 同意,(4) 所有权和 (5) 移植。每个主题中的问题既包括紧急问题(如同意的适当形式),也包括推测性问题(如保护有意识的人脑器官)。因此,我们试图尽可能明确每个问题实现的时间范围,并确定每个问题的优先次序。对这些问题的研究揭示了人脑类器官研究特有的法律问题和其他领域研究的共同问题。考虑到相关领域的讨论,今后需要从法律角度进一步讨论人脑类器官研究。
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引用次数: 0
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Journal of Bioethical Inquiry
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