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.
{"title":"Chapitre 5. L’innovation frugale au service de systèmes de santé durables.","authors":"Laurent Ravez","doi":"10.3917/jibes.333.0059","DOIUrl":"https://doi.org/10.3917/jibes.333.0059","url":null,"abstract":"<p><p>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.</p>","PeriodicalId":73577,"journal":{"name":"Journal international de bioethique et d'ethique des sciences","volume":"33 3","pages":"59-72"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9257268","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Hommage. Hommage à Christian de Paul de Barchifontaine et à Daniel Piedra Herrera.","authors":"Christian Byk","doi":"10.54695/jibes.333.0011","DOIUrl":"https://doi.org/10.54695/jibes.333.0011","url":null,"abstract":"","PeriodicalId":73577,"journal":{"name":"Journal international de bioethique et d'ethique des sciences","volume":"33 3","pages":"11-13"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9347797","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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。
{"title":"Chapitre 7. Les enjeux de l’aide médicale à mourir en contexte de sclérose latérale amyotrophique : une revue de la littérature.","authors":"Caroline Favron-Godbout, Eric Racine","doi":"10.3917/jibes.333.0095","DOIUrl":"https://doi.org/10.3917/jibes.333.0095","url":null,"abstract":"<p><p>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.</p>","PeriodicalId":73577,"journal":{"name":"Journal international de bioethique et d'ethique des sciences","volume":"33 3","pages":"95-128"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9606949","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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.
{"title":"Chapitre 1. Présentation de la nouvelle loi en contexte.","authors":"Xavier Bioy","doi":"10.54695/jibes.342.0017","DOIUrl":"https://doi.org/10.54695/jibes.342.0017","url":null,"abstract":"<p><p>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.</p>","PeriodicalId":73577,"journal":{"name":"Journal international de bioethique et d'ethique des sciences","volume":"34 2","pages":"17-32"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10567615","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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.
{"title":"Chapitre 12. Impact sociétal et éthique de la thérapie cellulaire et des biotechnologies.","authors":"Christian Jorgensen","doi":"10.3917/jibes.342.0165","DOIUrl":"https://doi.org/10.3917/jibes.342.0165","url":null,"abstract":"<p><p>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.</p>","PeriodicalId":73577,"journal":{"name":"Journal international de bioethique et d'ethique des sciences","volume":"34 2","pages":"165-171"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10567618","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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?
{"title":"Conclusions et ouverture : dialogue intergénérationnel.","authors":"Marie Glinel","doi":"10.54695/jibes.342.0243","DOIUrl":"https://doi.org/10.54695/jibes.342.0243","url":null,"abstract":"<p><p>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?</p>","PeriodicalId":73577,"journal":{"name":"Journal international de bioethique et d'ethique des sciences","volume":"34 2","pages":"243-272"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10567621","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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.
{"title":"Chapitre 16. Les effets de la loi sur la filiation.","authors":"Sophie Paricard","doi":"10.3917/jibes.342.0211","DOIUrl":"10.3917/jibes.342.0211","url":null,"abstract":"<p><p>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.</p>","PeriodicalId":73577,"journal":{"name":"Journal international de bioethique et d'ethique des sciences","volume":"34 2","pages":"211-220"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41184344","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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?
{"title":"Conclusions et ouverture : dialogue intergénérationnel.","authors":"Marie Glinel","doi":"10.3917/jibes.342.0243","DOIUrl":"10.3917/jibes.342.0243","url":null,"abstract":"<p><p>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?</p>","PeriodicalId":73577,"journal":{"name":"Journal international de bioethique et d'ethique des sciences","volume":"34 2","pages":"243-272"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41184392","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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..
{"title":"Chapitre 8. Annoncer ou pas la découverte d’anomalies non sollicitées lors d’un test génétique à séquençage haut débit ?","authors":"Myriam Guedj, Marion Rosier, Patrick Calvas, Sophie Julia, Christelle Garnier, Anne Cambon-Thomsen, Maria Teresa Munoz Sastre","doi":"10.3917/jibes.342.0121","DOIUrl":"https://doi.org/10.3917/jibes.342.0121","url":null,"abstract":"<p><strong>Objective: </strong>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.</p><p><strong>Method: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusion: </strong>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..</p>","PeriodicalId":73577,"journal":{"name":"Journal international de bioethique et d'ethique des sciences","volume":"34 2","pages":"121-130"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10197544","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Revue de livres.","authors":"Christian Byk","doi":"10.3917/jibes.341.0030","DOIUrl":"https://doi.org/10.3917/jibes.341.0030","url":null,"abstract":"","PeriodicalId":73577,"journal":{"name":"Journal international de bioethique et d'ethique des sciences","volume":"34 1","pages":"30"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9417687","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}