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Chapitre 5. L’innovation frugale au service de systèmes de santé durables. 第五章。为可持续卫生系统提供节俭创新。
Pub Date : 2023-01-01 DOI: 10.3917/jibes.333.0059
Laurent Ravez

Bioethics is sometimes presented as a series of universal guidelines aimed at regulating health care practices and research on human beings. Such a presentation, however, does not hold water in the face of the history of the discipline. Bioethics was born in the ideological context that prevailed in the United States in the 1960s and 1970s. Should we then abandon all hope of universality for ethical benchmarks that have proven their usefulness in illuminating health practices? By carefully distinguishing the universal from the uniform, this contribution shows, based on the work of G. Tangwa, that it is possible to respect the specificities of cultures around the world, while maintaining a universal aim for bioethics.

生物伦理学有时被认为是一系列旨在规范卫生保健实践和人类研究的普遍准则。然而,面对这门学科的历史,这样的陈述是站不住脚的。生命伦理学诞生于20世纪60年代和70年代盛行于美国的意识形态背景下。那么,我们是否应该放弃对已被证明在阐明卫生实践方面有用的伦理基准的普遍性的所有希望?根据G. Tangwa的工作,通过仔细区分普遍性和一致性,这一贡献表明,在保持生物伦理学的普遍目标的同时,尊重世界各地文化的特殊性是可能的。
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引用次数: 0
Hommage. Hommage à Christian de Paul de Barchifontaine et à Daniel Piedra Herrera. 致敬。向Christian de Paul de Barchifontaine和Daniel Piedra Herrera致敬。
Pub Date : 2023-01-01 DOI: 10.54695/jibes.333.0011
Christian Byk
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引用次数: 0
Chapitre 7. Les enjeux de l’aide médicale à mourir en contexte de sclérose latérale amyotrophique : une revue de la littérature. 第7章)。肌萎缩性侧索硬化症背景下死亡的医疗援助问题:文献综述。
Pub Date : 2023-01-01 DOI: 10.3917/jibes.333.0095
Caroline Favron-Godbout, Eric Racine

Amyotrophic lateral sclerosis (ALS) is an incurable neurodegenerative disease that leads some people with the disease to consider medical assistance in dying (MAiD). In this article, we describe how a variety of moral problems can emerge from this particular context and affect the well-being of people with ALS, their loved ones, and their caregivers. As MAiD is framed by specific eligibility criteria, broadening its eligibility is often proposed to address these issues. This critical review of the literature aims to identify moral issues relating to ALS that may persist or arise in the event of such widening. The MEDLINE, EMBASE CINAHL and Web of Science databases were searched using 4 search combinations to capture insights from existing literature on ethics, MAiD and ALS (N=41). A thematic content analysis highlighted 3 contextual categories where moral issues emerge (the experience of the disease, the choice of how to die, and the implementation of MAiD). Two important observations are discussed: 1) there are differences in perspective between stakeholders, which can lead to disagreement, but some similarities of perspective also exist; 2) the widening of MAiD eligibility mainly concerns moral issues related to the choice of how to die, and thus constitutes a partial solution to the problems identified.

肌萎缩性侧索硬化症(ALS)是一种无法治愈的神经退行性疾病,导致一些患者在死亡时考虑医疗援助(MAiD)。在这篇文章中,我们描述了各种各样的道德问题是如何在这种特殊的背景下出现的,并影响到ALS患者、他们的亲人和他们的照顾者的福祉。由于MAiD有具体的资格标准,因此经常建议扩大其资格以解决这些问题。这篇对文献的批判性回顾旨在确定与ALS相关的道德问题,这些问题可能在这种扩大的情况下持续存在或出现。使用4种检索组合对MEDLINE、EMBASE CINAHL和Web of Science数据库进行检索,以获取有关伦理学、MAiD和ALS的现有文献的见解(N=41)。专题内容分析突出了出现道德问题的3个背景类别(疾病经历、死亡方式的选择和MAiD的实施)。讨论了两个重要的观察结果:1)利益相关者之间的观点存在差异,这可能导致分歧,但也存在一些观点的相似性;2) MAiD资格的扩大主要涉及与死亡方式选择相关的道德问题,因此构成了对所确定问题的部分解决方案。
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引用次数: 0
Chapitre 1. Présentation de la nouvelle loi en contexte. 第一章的标题。介绍新法律的背景。
Pub Date : 2023-01-01 DOI: 10.54695/jibes.342.0017
Xavier Bioy

The 2021 bioethics law intends mainly to respond to expectations from society, mainly from minorities regarding procreation and little relayed by the “general states of bioethics”. It therefore looks bioethics, at the legislative level, not as a set of safeguards against the evolution of technologicals resources, but as the granting of new rights using these technologies. Beyond procreation, the law also loosens the constraints on the research and organ donation or genetic information. In so doing, it determines new balances between subjective rights and protective orders, which the Constitutional Council did not wish to examine.

2021年的生物伦理法主要是为了回应社会的期望,主要是少数民族对生育的期望,而生物伦理的一般状态几乎没有体现出来。因此,在立法层面上,它认为生物伦理不是一套防止技术资源演变的保障措施,而是授予使用这些技术的新权利。除了生殖之外,该法律还放宽了对研究、器官捐赠或遗传信息的限制。在这样做时,它确定了主观权利和保护命令之间的新平衡,这是宪法委员会不希望审查的。
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引用次数: 0
Chapitre 12. Impact sociétal et éthique de la thérapie cellulaire et des biotechnologies. 12章。细胞治疗和生物技术的社会和伦理影响。
Pub Date : 2023-01-01 DOI: 10.3917/jibes.342.0165
Christian Jorgensen

Cell therapy is becoming established in many fields, including oncology with CAR-Ts or in regenerative medicine for cardiovascular diseases, diabetes or musculoskeletal disorders with mesenchymal stromal cells. These therapeutic cells are called advanced therapy medicinal products (ATMPs) and include all processes including cells manipulated to obtain reprogramming (iPS), to induce gene expression or by genome editing to modify the expression of a gene. The development of new biomaterial supports that can be 3D printed and take the desired shape of the target tissue before being colonised by the cellular elements necessary for their biological functions and replace the failing organ. All of these new technologies are driving innovation and the development of tomorrow’s bio-medicines. These new biotherapies will profoundly modify patient care in all areas, changing medical practices but with a considerable societal impact. Thus, the development and clinical research on cellular biotherapies are essential health issues but with a major ethical, societal and economic impact.

细胞疗法已经在许多领域建立起来,包括使用car - t的肿瘤学或使用间充质间质细胞治疗心血管疾病、糖尿病或肌肉骨骼疾病的再生医学。这些治疗细胞被称为高级治疗药物产品(ATMPs),包括所有过程,包括通过操纵细胞获得重编程(iPS)、诱导基因表达或通过基因组编辑修改基因表达。开发新的生物材料支持,可以3D打印,并在被其生物功能所需的细胞元素定植之前采取目标组织的所需形状,并取代衰竭的器官。所有这些新技术都在推动未来生物医药的创新和发展。这些新的生物疗法将深刻地改变所有领域的病人护理,改变医疗实践,但具有相当大的社会影响。因此,细胞生物疗法的发展和临床研究是必不可少的健康问题,但具有重大的伦理、社会和经济影响。
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引用次数: 0
Conclusions et ouverture : dialogue intergénérationnel. 结论和建议:与其他人员对话。
Pub Date : 2023-01-01 DOI: 10.54695/jibes.342.0243
Marie Glinel

As the bioethics law has just been voted, several actors during this academic conference have examined the paradigm shift introduced by this resolutely liberal law from their respective perspectives. Using a reading grid inherited from Pascal’s orders, the different dimensions of moral, political, legal, and scientific discourse are used as a reference to evaluate an often highly contrasting discourse. The evolution of the paradigm from bioethics law to zoethics law, in search of social legitimacy and of a response to individual desires, constitutes a turning point in the revision of bioethics laws. Under these conditions, does bioethics law does not lose its universal purpose?

由于生物伦理法刚刚被投票通过,这次学术会议上的几位参与者从他们各自的角度审视了这一坚决自由的法律所带来的范式转变。使用继承自pascal的阅读网格,道德、政治、法律和科学话语的不同维度被用作评价经常高度对比的话语的参考。从生命伦理学法到动物伦理学法的范式演变,寻求社会合法性和对个人欲望的回应,构成了生命伦理学法修订的转折点。在这种情况下,生命伦理学法是否失去了它的普遍目的?
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引用次数: 0
Chapitre 16. Les effets de la loi sur la filiation. 第16章。法律对亲子关系的影响。
Pub Date : 2023-01-01 DOI: 10.3917/jibes.342.0211
Sophie Paricard

The bioethics law of 2 August 2021 opened up MAP to couples of women, thus enabling a child to have two women as parents and overturning the law of filiation. The legislator has created a new tool for establishing filiation by blood, the joint recognition. Despite its name, this joint recognition only applies to the woman who has not given birth, creating unequal filiation between the two women, and does not fit easily into the common law of filiation by blood.

2021年8月2日的生物伦理法向女性夫妇开放了MAP,从而使一个孩子能够有两个女性作为父母,并推翻了亲子关系法。立法者创造了一种新的工具来建立血缘关系,即共同承认。尽管名字如此,这种共同承认只适用于未生育的女性,这在两位女性之间造成了不平等的血缘关系,不容易符合普通的血缘关系法。
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引用次数: 0
Conclusions et ouverture : dialogue intergénérationnel. 结论和开放性:代际对话。
Pub Date : 2023-01-01 DOI: 10.3917/jibes.342.0243
Marie Glinel

As the bioethics law has just been voted, several actors during this academic conference have examined the paradigm shift introduced by this resolutely liberal law from their respective perspectives. Using a reading grid inherited from Pascal’s orders, the different dimensions of moral, political, legal, and scientific discourse are used as a reference to evaluate an often highly contrasting discourse. The evolution of the paradigm from bioethics law to zoethics law, in search of social legitimacy and of a response to individual desires, constitutes a turning point in the revision of bioethics laws. Under these conditions, does bioethics law does not lose its universal purpose?

由于生物伦理法刚刚投票通过,本次学术会议上的几位参与者从各自的角度审视了这项坚决自由的法律所带来的范式转变。使用继承自Pascal的读取网格;道德、政治、法律和科学话语的不同维度被用作评估一个经常高度对比的话语的参考。从生物伦理法到行为伦理法的范式演变,寻求社会合法性和对个人欲望的回应,构成了生物伦理法修订的转折点。在这种情况下,生物伦理法是否不失普遍性?
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引用次数: 0
Chapitre 8. Annoncer ou pas la découverte d’anomalies non sollicitées lors d’un test génétique à séquençage haut débit ? 第八章。在高通量测序基因测试中宣布或不宣布主动发现的异常?
Pub Date : 2023-01-01 DOI: 10.3917/jibes.342.0121
Myriam Guedj, Marion Rosier, Patrick Calvas, Sophie Julia, Christelle Garnier, Anne Cambon-Thomsen, Maria Teresa Munoz Sastre

Objective: New genome sequencing techniques allow new approaches in medical genetics, in particular by facilitating the diagnosis of genetic diseases. However, their use also leads to unsolicited genetic findings being uncovered. This type of discovery raises ethical, legal and psychological considerations. The objective of this psychological research was to study the different positions of patients, health professionals and general public regarding the acceptability of the announcement of unsolicited findings revealed during a high-throughput sequencing genetic test.

Method: the first exploratory study aimed, through non-directive research interviews conducted with 13 patients of a medical genetics service, to understand the psychological repercussions linked to the announcement of a result of a targeted genetic test and to know the patients’ desires regarding the announcement of unsolicited findings if the test had been a high-throughput genetic test. The second study, using a quantitative methodology, aimed to identify the judgment policies of 144 patients, 94 healthcare professionals and 211 people from the general public concerning the acceptability of this type of disclosure.

Results: The cluster analyses highlighted six judgment policies as to whether or not to disclose the discovery of unsolicited anomalies: “Tell everything”, “Tell even in part”, “Tell everything unless desperate”, “Undecided”, “Do not tell” and “Do not tell if no prevention”. The participants positioned themselves differently, in particular according to the patient’s consent.

Conclusion: This research shows the variability of positioning and the importance of consent in the acceptability of the disclosure of unsolicited findings. However, one of the limitations of the study lies in the fact that in medical clinic, acceptability and acceptance may vary over time. A longitudinal study would undoubtedly afford a better understanding of the psychological progress of patients in this type of care pathway..

目的:新的基因组测序技术为医学遗传学提供了新的途径,特别是通过促进遗传疾病的诊断。然而,它们的使用也会导致未经请求的基因发现被发现。这种类型的发现引起了伦理、法律和心理方面的考虑。这项心理研究的目的是研究患者、卫生专业人员和一般公众对高通量测序基因测试期间公布未经请求的结果的可接受性的不同立场。方法:第一项探索性研究旨在通过对医学遗传学服务的13名患者进行非指导性研究访谈,了解与宣布目标基因检测结果相关的心理影响并了解患者;如果检测是一种高通量基因检测,关于宣布未经请求的发现的愿望。第二项研究使用定量方法,旨在确定144名患者、94名医疗保健专业人员和211名公众对这类披露的可接受性的判断政策。结果:聚类分析突出了关于是否披露发现的主动异常的六种判断策略:“Tell everything” “即使部分地告诉”“告诉一切,除非绝望”“未决定”“和“不要告诉如果没有预防”。参与者对自己的定位不同,特别是根据患者的同意。结论:本研究显示了定位的可变性和同意在非自愿发现披露的可接受性中的重要性。然而,本研究的局限性之一在于,在医学临床中,可接受性和接受度可能会随着时间的推移而变化。纵向研究无疑可以更好地了解患者在这类护理途径中的心理进展。
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引用次数: 0
Revue de livres. 书评。
Pub Date : 2023-01-01 DOI: 10.3917/jibes.341.0030
Christian Byk
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引用次数: 0
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Journal international de bioethique et d'ethique des sciences
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