Bioethics

生物伦理学
  • 文章类型: Journal Article
    本文研究了选择的框架,新加坡关于选修卵子冷冻的辩论中的风险和倾向,从2012年政府对禁令的审查开始,到2023年程序合法化时结束。它证明了将关于生殖选择的自由话语与关于卵子冷冻的技术批评话语调和为一种危险且压迫性的发音技术的可能性。虽然医疗并发症,虚假的希望和商业滥用是新加坡长期以来的担忧,通过年龄限制,这些风险被认为与选择相协调,来自国家和国际监管背景的强制性咨询和比较框架。此外,低生育率和促进性别平等的努力使选择和平等成为政策理由,而女性候选人的“异性恋生殖欲望”的建构以女性为中心的方式构成了发音主义。新加坡强大的干预主义文化促进了这种和解,这种文化使家长制和专一主义正常化。在这种情况下,通过参与者表达政策理念,选择性卵子冷冻被重新解释为一种风险可控的技术,以及对妇女和国家的希望技术。因此,政治家共同创造了一个道德的新加坡国家,该国家允许选择性冷冻卵子,同时支持妇女和社会的利益,记者和医生。
    This article examines the framing of choice, risk and pronatalism in Singapore\'s debate on elective egg freezing, beginning from the government\'s review of the ban in 2012 and ending in 2023 when the procedure was legalised. It demonstrates the possibility of reconciling liberal discourses on reproductive choice with technocritical discourses on egg freezing as a risky and oppressive pronatalist technology. While medical complications, false hope and commercial abuse were longstanding concerns in Singapore, these risks were perceived as reconcilable with choice through an age limit, mandatory counselling and comparative frames from the national and international regulatory context. Additionally, low fertility rates and efforts to advance gender equality enabled the reconciliation of choice and pronatalism as policy justifications, while the construction of female candidates\' heteronormative reproductive desire framed pronatalism in women-centric ways. Such reconciliation was facilitated by Singapore\'s strong interventionist culture which normalises paternalism and pronatalism. Within this context and through actors\' articulation of policy ideas, elective egg freezing was reinterpreted as a technology with manageable risks, and a hope technology for women and nation. A moral Singapore State which permits elective egg freezing while supporting the interests of women and society was thus co-produced by politicians, journalists and doctors.
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  • 文章类型: Journal Article
    背景:新兴的生物标志物技术(例如,MRI,脑电图,数字表型,眼动追踪)有可能将自闭症的识别转移到生命的第一年。我们调查了父母对从婴儿期基于生物标志物的测试中预测后期自闭症诊断的预期效用和影响的观点。
    方法:对婴儿的父母进行了访谈,以确定使用新兴生物标志物技术对自闭症早期(6-12个月)预测的接受度和观点。一组有养育年龄较大的自闭症儿童的经验(n=30),另一个没有自闭症育儿经验(n=25)。使用归纳定性编码方法分析了父母的反应。
    结果:两组中几乎所有的父母都对自闭症的预测性测试感兴趣,一些人表示,只有在担心婴儿发育的情况下,他们才会寻求检测。测试的主要预期优势是能够获得更早的干预。父母还描述了他们对测试结果的预期情绪,他们在学习婴儿可能患上自闭症时可能采取的行动,对预测儿童未来支持需求的态度,以及不准确预测的潜在影响。
    结论:在定性访谈中,有或没有自闭症经历的婴儿的父母分享了他们预期的动机和对自闭症第一年预测测试的担忧。据报道,测试的主要动机——有更多时间提前准备和干预——可能会受到家庭资源和服务可用性的限制。对结果的伦理沟通的影响,公平的早期干预,并对未来的研究进行了讨论。
    BACKGROUND: Emerging biomarker technologies (e.g., MRI, EEG, digital phenotyping, eye-tracking) have potential to move the identification of autism into the first year of life. We investigated the perspectives of parents about the anticipated utility and impact of predicting later autism diagnosis from a biomarker-based test in infancy.
    METHODS: Parents of infants were interviewed to ascertain receptiveness and perspectives on early (6-12 months) prediction of autism using emerging biomarker technologies. One group had experience parenting an older autistic child (n=30), and the other had no prior autism parenting experience (n=25). Parent responses were analyzed using inductive qualitative coding methods.
    RESULTS: Almost all parents in both groups were interested in predictive testing for autism, with some stating they would seek testing only if concerned about their infant\'s development. The primary anticipated advantage of testing was to enable access to earlier intervention. Parents also described the anticipated emotions they would feel in response to test results, actions they might take upon learning their infant was likely to develop autism, attitudes towards predicting a child\'s future support needs, and the potential impacts of inaccurate prediction.
    CONCLUSIONS: In qualitative interviews, parents of infants with and without prior autism experience shared their anticipated motivations and concerns about predictive testing for autism in the first year of life. The primary reported motivators for testing-to have more time to prepare and intervene early-could be constrained by familial resources and service availability. Implications for ethical communication of results, equitable early intervention, and future research are discussed.
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  • 文章类型: Journal Article
    2008年,在英国重新引入了循环系统死亡后的受控器官捐赠(DCD),以努力提高器官移植率。在重新引入之后,有关于DCD伦理的争论,包括潜在的DCD捐赠者是否获得最符合他们利益的临终关怀。从这次开始,DCD已成为NHS中的常规供体途径。在这篇文章中,我们提供了一项人种学研究的结果,该研究研究了两个英国信托基金中DCD的日常实践。借鉴死亡经纪的概念和Bea\'s(2020)呼吁将器官捐赠视为医疗保健中的嵌入式和常规做法,我们来看看DCD是如何整合到重症监护病房的临终关怀中的。我们展示了如何通过卫生专业人员的做法使DCD在生命结束时成为常规,这些专业人员在关于死亡和捐赠的讨论之间建立了积极的分离;在生命结束护理中重现通常的做事方式;并尊重患者/捐赠者之间的区别,死亡和死亡。在这样做的时候,我们认为这些功能是为了保护潜在捐赠者的耐心,确保DCD作为一个整体部分运作,和文化上接受的形式,为潜在的捐赠者提供良好的临终关怀,他们的亲戚,和健康专业人士一样。
    Controlled organ donation after circulatory death (DCD) was re-introduced in the UK in 2008, in efforts to increase rates of organs for transplant. Following reintroduction, there were debates about the ethics of DCD, including whether potential DCD donors receive end-of-life care which is in their best interests. Since this time, DCD has become a routine donor pathway in the NHS. In this article, we present findings from an ethnographic study examining the everyday practices of DCD in two English Trusts. Drawing on the concept of death brokering and Bea\'s (2020) call to consider organ donation as embedded and routine practice within health care, we look at how DCD is integrated into end-of-life care in intensive care units. We show how DCD is made routine at the end-of-life via the practices of health professionals who create an active separation between discussions about death and donation; reproduce usual ways of doing things in end-of-life care; and respect the distinction between patient/donor, dying and death. In doing so, we argue these function to preserve the patienthood of the potential donor, ensuring DCD operates as an integrated part, and culturally accepted form of, good end-of-life care for potential donors, their relatives, and health professionals alike.
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  • 文章类型: Journal Article
    在临床试验中包括育龄妇女,因此有必要从生物伦理学的角度考虑两个因素:第一,缺乏关于研究产品潜在致畸作用的知识,而且,正义原则不排除任何人口从研究的利益。解决这个问题的最常见方法是要求志愿者在使用避孕药之前,during,在临床试验几周后.这项工作介绍了在阿尔茨海默病预防倡议常染色体显性阿尔茨海默病(APIADAD)哥伦比亚临床试验期间用于促进避孕使用和预防怀孕的所有策略。该试验的两个特征使其对密切监测避孕使用特别感兴趣。一是审判持续了7年多,另一个是参与者可能是E280APSEN1突变的携带者,早在30多岁时就导致轻度认知障碍。
    在筛查访视期间进行了一项单独的医学评估,以选择最适合志愿者的避孕方法,必要时交给妇科医生。所有非手术避孕方法均由申办方提供。工作人员接受了避孕咨询培训,向志愿者正确分配避孕药,和识别,reporting,并跟进怀孕。进行了两次关于避孕使用的全面教育运动,干预包括所有志愿者。此外,在一项年度调查中,我们要求志愿者评估配药程序.最后,这些策略的有效性进行了回顾性评估,通过外推法将整个试验期间出现的怀孕次数与哥伦比亚的一般生育率进行比较。
    共招募了159名女性志愿者。所有战略都按计划实施,即使在COVID-19应急期间。评估期间(2015-2021年)发生了10次怀孕。计划了两个;其余的与潜在的治疗失败或不正确使用避孕方法有关,每年避孕失败0.49%。百分之六十的怀孕导致堕胎,流产或治疗性流产。然而,没有足够的数据将妊娠结局与研究产品的给药相关联.最后,我们观察到,与哥伦比亚人群相比,参与试验的女性生育率较低.
    在7年的评估中,与哥伦比亚人口相比,参与试验的妇女避孕失败的发生率较低,怀孕的发生率下降,这表明在APIADADColombia中使用的策略在解决避孕使用方面是充分和有效的。
    UNASSIGNED: Including women of childbearing age in a clinical trial makes it necessary to consider two factors from a bioethical perspective: first, the lack of knowledge about the potential teratogenic effects of an investigational product, and also, the principle of justice not to exclude any population from the benefits of research. The most common way to address this issue is by requiring volunteers to use contraceptives before, during, and a few weeks after the clinical trial. This work presents all the strategies used to promote contraception use and prevent pregnancy during the Alzheimer\'s Prevention Initiative Autosomal-Dominant Alzheimer\'s Disease (API ADAD) Colombia clinical trial. Two characteristics of this trial make it of special interest for closely monitoring contraception use. One is that the trial lasted more than 7 years, and the other is that participants could be carriers of the E280A PSEN1 mutation, leading to a mild cognitive impairment as early as their late 30s.
    UNASSIGNED: An individual medical evaluation to select the contraception method that best fits the volunteer was carried out during the screening visit, remitting to the gynecologist when necessary. All non-surgical contraception methods were supplied by the sponsor. Staff were trained on contraception counseling, correctly dispensing contraceptive drugs to volunteers, and identifying, reporting, and following up on pregnancies. Two comprehensive educational campaigns on contraception use were performed, and the intervention included all volunteers. In addition, volunteers were asked on an annual survey to evaluate the dispensing procedure. Finally, the effectiveness of these strategies was retrospectively evaluated, comparing by extrapolation the number of pregnancies presented throughout the trial with the General Fertility Rate in Colombia.
    UNASSIGNED: A total of 159 female volunteers were recruited. All strategies were implemented as planned, even during the COVID-19 contingency. Ten pregnancies occurred during the evaluation period (2015-2021). Two were planned; the rest were associated with a potential therapeutic failure or incorrect use of contraceptive methods for a contraceptive failure of 0.49% per year. Sixty percent of pregnancies led to an abortion, either miscarriage or therapeutic abortion. However, there was not enough data to associate the pregnancy outcome with the administration of the investigational product. Finally, we observed a lower fertility rate in women participating in the trial compared to the Colombian population.
    UNASSIGNED: The lower rates of contraceptive failure and the decrease in the incidence of pregnancies in women participating in the trial compared to the Colombian population across the 7 years of evaluation suggest that the strategies used in API ADAD Colombia were adequate and effective in addressing contraception use.
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  • 文章类型: Journal Article
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  • 文章类型: Journal Article
    反抗是一种社会疾病。我们被围绕堕胎的文化战争所包围,疫苗授权,跨性别护理,我们怎么死,甚至我们如何定义死亡。问题不在于我们不同意,但是我们的分歧是:太频繁了,带着愤怒,侵略,以及战胜对方的紧迫感.生物伦理学家具有模拟建设性分歧和尊重变革呼吁所需的知识和技能。生物伦理学家可能已经意识到每个人都患有无意识的自我服务偏见-我们都是不完美的。他们被训练来识别相互竞争的价值观,并参与在社会环境中平衡价值观的过程。临床伦理学家还接受过调解方面的培训,这包括承认善意,深入聆听,在需要的时候道歉,寻求共同点。总之,生物伦理学家拥有许多必要的工具,可以成为饱受战斗性折磨的文化的治疗者。
    Combativeness is a social illness. We are surrounded by culture wars over abortion, vaccine mandates, transgender care, how we die, and even how we define death. The problem is not that we disagree, but how we disagree: too often, with anger, aggression, and a sense of urgency to win against the other. Bioethicists have the knowledge and skills needed to model constructive disagreement and respectful calls for change. Bioethicists may have increased awareness that everyone suffers from unconscious self-serving biases-we are all imperfect. They are trained to recognize competing values and to engage in processes of balancing values in social contexts. Clinical ethicists are additionally trained in mediation, which involves acknowledging goodwill, listening deeply, apologizing when needed, and seeking common ground. In short, bioethicists have many of the tools needed to be healers of a culture afflicted with combativeness.
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  • 文章类型: English Abstract
    本文从个人主义的生物伦理学出发,分析了由无控制的自治和受格言支配的命令所支持的技术进步模型:如果可以做到,让我们做吧!,作为进步的必要和充分条件。这使我们处于技术上可行和道德上合法之间的滑坡。哲学家的开创性工作,JoséSanmartinEsplugues2,敦促反思面对技术的丰富,将人类视为有用的具体对象,并提供干预人类生活的权力,这是以前无法想象的。将人减少到仅仅是生物材料数据,通过服从工具理性主义的计算,为增加去人性化打开了大门。在看到自己处于世界之巅的愿望和遗传技术的基础上,是对人类解放的渴望的最终表达,这种渴望渴望通过抽象的后生物学想象来控制进化。Sanmartin提出了一种超越传统影响类别的技术科学活动的道德评估和社会插入模型,区分社会的使用和有效性,文化,经济,政治和价值观相关,为了通过既不无害也不中性的技术来绣出一种决定人类生活方式和目的的图案。一个没有解毒剂的社会,也教会我们培养关于人性的乌托邦梦想,很容易被那些承诺幸福世界并从我们的脆弱中拯救我们的精英们所塑造。
    This essay analyzes from a personalistic bioethics the model of technological progress supported by an autonomy without controls and an imperative that is governed by the maxim: if it can be done, let\'s do it!, as a necessary and sufficient condition of progress. This puts us on the slippery slope between the technically feasible and the morally lawful. The pioneering work of the philosopher, José Sanmartin Esplugues 2 , urges reflection in the face of a technological profusion that sees the human being as a useful embodied object and offers powers of intervention on human life that were previously unimaginable. The reduction of the person to mere biological-material data opens the door to increasing deshumanization by subordination to the calculations of an instrumental rationalism. Underlying the desire to see ourselves at the top of the world and genetic techniques are the ultimate expression of a longing for human emancipation that aspires to take the reins of evolution through an abstract postbiological imaginary. Sanmartin proposes a model of ethical evaluation and social insertion of technoscientific activity that goes beyond the conventional categories of impact, use and effectiveness to distinguish social, cultural, economic, political and values correlates, in order to embroider a pattern that decides on the means and ends of human life through technologies that are neither innocuous nor neutral. A society without antidotes to manipulation that also teaches us to cultivate utopian dreams about human nature is easily malleable by elites who promise happy worlds and redeem us from our vulnerability.
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  • 文章类型: Journal Article
    本评论讨论了有关在医院接受道德咨询的12个故事。五个故事是医生写的,三个是护士,和四个家庭成员;三位作家接受了生物伦理学方面的培训。一些作家要求咨询,其他人将协商视为强加于人,在两种情况下,这个故事是关于没有任何咨询服务。发现三种类型的叙事结构的故事:真正的困境叙事,制度不妥协的叙述,和关系关怀叙事。在整个过程中,问题是什么可以进行有价值的咨询,一般的答案是协商是否可以发展相互支持的关系。
    This commentary discusses 12 stories about receiving ethics consultation in hospitals. Five stories are by physicians, three by nurses, and four by family members; three of the writers have training in bioethics. Some writers requested the consultation, others experienced the consultation as an imposition forced upon them, and in two cases, the story is about the absence of any consultation service. Three types of narrative are found to structure the stories: the genuine dilemma narrative, the institutional intransigence narrative, and the relational care narrative. Throughout, the question is what makes for a valuable consultation, and the general answer is whether consultation enables the development of mutually supportive relationships.
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  • 文章类型: Journal Article
    本文研究了在破坏性技术上应用开放科学(OS)实践的伦理意义,如生成AI。颠覆性技术,以它们的可扩展性和范式转换性质为特征,有可能产生重大的全球影响,并有双重使用的风险。操作系统通过使知识民主化来促进社会利益的道德义务与与破坏性技术的公开传播相关的风险之间存在紧张关系。VanRennselaerPotter的“第三生物伦理学”是治理这些紧张局势的伦理框架的基础。通过理论分析和具体实例,本文探讨了操作系统如何为更好的未来做出贡献或构成威胁。最后,我们为操作系统和颠覆性技术之间的交叉提供了一个道德框架,试图超越简单的“尽可能开放”的原则,将开放视为追求其他伦理价值的工具性价值,而不是具有表面道德意义的原则。
    This paper investigates the ethical implications of applying open science (OS) practices on disruptive technologies, such as generative AIs. Disruptive technologies, characterized by their scalability and paradigm-shifting nature, have the potential to generate significant global impact, and carry a risk of dual use. The tension arises between the moral duty of OS to promote societal benefit by democratizing knowledge and the risks associated with open dissemination of disruptive technologies. Van Rennselaer Potter\'s \'third bioethics\' serves as the founding horizon for an ethical framework to govern these tensions. Through theoretical analysis and concrete examples, this paper explores how OS can contribute to a better future or pose threats. Finally, we provide an ethical framework for the intersection between OS and disruptive technologies that tries to go beyond the simple \'as open as possible\' tenet, considering openness as an instrumental value for the pursuit of other ethical values rather than as a principle with prima facie moral significance.
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  • 文章类型: Journal Article
    体育在创造公平方面面临许多挑战,有趣的,和有意义的比赛,突出和奖励体育中广泛重视的品质,比如天赋,奉献,有竞争力的精明。残奥会通过组织将具有同等损伤水平的运动员分组,以使原始的身体差异不会压倒天赋或奉献精神的差异,从而阐明了挑战和深思熟虑的应对方式。反思在决定谁与谁竞争时如何使用性别可能会有所帮助。长期以来,性别一直是大小和力量差异的粗略代表。对于大小和力量很重要的运动,这些是竞争对手应该匹配的维度,不是他们的性别认同。在这个意义上,性别是体育公平竞争的附带因素。因为运动在很多方面对人们都有好处,我们应该为所有人提供广泛和愉快的丰富机会。
    Sport faces many challenges in creating fair, interesting, and meaningful competitions that highlight and reward the qualities widely valued in sport, such as natural talents, dedication, and competitive savvy. The Paralympic Games illuminate both the challenge and a thoughtful way of responding by organizing events that group athletes with comparable levels of impairment so that raw physical discrepancies don\'t overwhelm differences in talent or dedication. It may be helpful to reflect on how gender is used in decisions about who competes against whom. Gender has long served as a rough proxy for differences in size and strength. For sports where size and strength matter, those are the dimensions along which competitors should be matched, not their gender identity. In that sense, gender is incidental to fair competition in sport. Because playing sports is good for people in so many ways, we should provide abundant opportunities that are widely available and enjoyable for all people.
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