EUROPEAN JOURNAL OF HEALTH LAW最新文献_第8页

The European Court of Human Rights and the Emergence of Human Germline Genome Editing. 欧洲人权法院与人类生殖系基因组编辑的出现。

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EUROPEAN JOURNAL OF HEALTH LAW Pub Date : 2022-04-13 DOI: 10.1163/15718093-bja10082

Merel M Spaander

引用次数: 0

Governing, Protecting, and Regulating the Future of Genome Editing: The Significance of ELSPI Perspectives. 管理、保护和调节基因组编辑的未来:ELSPI观点的意义。

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EUROPEAN JOURNAL OF HEALTH LAW Pub Date : 2022-04-08 DOI: 10.1163/15718093-bja10076

Santa Slokenberga, Timo Minssen, Ana Nordberg

引用次数: 1

Addressing Cognitive Vulnerabilities through Genome and Epigenome Editing: Techno-Legal Adaptations for Persons with Intellectual Disabilities. 通过基因组和表观基因组编辑解决认知脆弱性:智障人士的技术法律适应。

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EUROPEAN JOURNAL OF HEALTH LAW Pub Date : 2022-04-08 DOI: 10.1163/15718093-bja10085

Pin Lean Lau

{"title":"Addressing Cognitive Vulnerabilities through Genome and Epigenome Editing: Techno-Legal Adaptations for Persons with Intellectual Disabilities.","authors":"Pin Lean Lau","doi":"10.1163/15718093-bja10085","DOIUrl":"https://doi.org/10.1163/15718093-bja10085","url":null,"abstract":"The key aim of this paper is to highlight the oft-under-represented narrative of how persons with disabilities (specifically, those with intellectual disabilities) may access the benefits that genome editing may offer. Firstly, this paper reflects on the critical need for a paradigm shift in how we view intellectual disabilities, and centering the rights of persons with disabilities to allow them to access the broad scope of their right to health under various international law instruments (including the complementary right to habilitation under Article 26 of the CRPD). Secondly, the paper evaluates the legal provisions in the CRPD and other international instruments relating to the rights of persons with intellectual disabilities, and their access to genome editing technologies. This analysis intends to demonstrate that human rights in disability discourse be complemented with emancipatory, participatory, and transformative research. Finally, the paper argues for a reinvigorated line of thinking that expands on the social model of disability: to align with inclusive, contemporary disability discourse that embodies greater responsibility and innovation in perpetuating better access to genome editing technologies for persons with intellectual disabilities.","PeriodicalId":43934,"journal":{"name":"EUROPEAN JOURNAL OF HEALTH LAW","volume":"29 3-5","pages":"409-434"},"PeriodicalIF":0.8,"publicationDate":"2022-04-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10022045","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}

引用次数: 1

Balancing Innovation, 'Ordre Public' and Morality in Human Germline Editing: A Call for More Nuanced Approaches in Patent Law. 平衡人类生殖系编辑中的创新、“公共秩序”和道德:呼吁在专利法中采取更细致入微的方法。

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EUROPEAN JOURNAL OF HEALTH LAW Pub Date : 2022-04-08 DOI: 10.1163/15718093-bja10073

Duncan Matthews, Timo Minssen, Ana Nordberg

{"title":"Balancing Innovation, 'Ordre Public' and Morality in Human Germline Editing: A Call for More Nuanced Approaches in Patent Law.","authors":"Duncan Matthews, Timo Minssen, Ana Nordberg","doi":"10.1163/15718093-bja10073","DOIUrl":"https://doi.org/10.1163/15718093-bja10073","url":null,"abstract":"This article analyses the role that 'ordre public' and morality exceptions can play in the granting of patents on inventions in the field of human germline editing and the consequences of this policy option. In order to provide the context for such an analysis, the article will, first, provide an overview of the current patent landscape for relevant genome editing technologies, drawing attention to recent patent disputes and, second, examine 'ordre public' and morality exceptions under patent law in international, national and regional law, and the implications for innovation and access to novel treatments. The article argues that patent exceptions should not be used as a blunt policy instrument, nor interpreted in a way that is contrary to the patent system's overall objectives. The 'ordre public' and morality based exceptions in the context of human germline editing should not be interpreted and applied in a way which results in outcomes counterproductive to the goal of balancing innovation with the protection of societal higher normative values. Instead, the application of the exception should be based on a sound understanding of both the underlying science as well as the broader ethical, social, and legal implications, thus enabling case-by-case decisions that provide the basis for patent claim amendments and nuanced purpose-bound protection. Further analysis and debate as to the role that such flexibilities can play in the context of genome editing technologies is therefore both necessary and desirable, and can be facilitated in the ways set out in this article.","PeriodicalId":43934,"journal":{"name":"EUROPEAN JOURNAL OF HEALTH LAW","volume":"29 3-5","pages":"562-588"},"PeriodicalIF":0.8,"publicationDate":"2022-04-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10019387","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}

引用次数: 0

What Would It Take to Enable Germline Editing in Europe for Medical Purposes? 为了医学目的，在欧洲进行生殖细胞编辑需要什么?

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EUROPEAN JOURNAL OF HEALTH LAW Pub Date : 2022-04-08 DOI: 10.1163/15718093-bja10074

Santa Slokenberga

{"title":"What Would It Take to Enable Germline Editing in Europe for Medical Purposes?","authors":"Santa Slokenberga","doi":"10.1163/15718093-bja10074","DOIUrl":"https://doi.org/10.1163/15718093-bja10074","url":null,"abstract":"Commonly, the regulation on germline editing in Europe is described through the two prohibitions: the prohibition set out in Article 13 of the Convention for the protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine and the prohibition that is set out in the EU Clinical Trials Regulation. These prohibitions reflect the European regional position regarding the ethical and legal questions raised by the technology, and an unwillingness to enable such interventions in Europe. Simultaneously, these prohibitions have been shaped prior to the recent breakthroughs in the field, such as the discovery of the CRISPR-Cas technology, which has initiated a new era in the field. This contribution examines what it would take to enable human germline gene editing in Europe for medical purposes. It scrutinises in detail the content and context of the existing bans, as well as mechanisms to lift them. It argues that the bans that are prescribed by each of the European regional legal orders are embedded in strong structures, composed of values and principles. For the human germline gene editing to be enabled in Europe for health-related purposes, the approach to these values and principles needs to change. Only then can the machinery to lift the bans lead to a change.","PeriodicalId":43934,"journal":{"name":"EUROPEAN JOURNAL OF HEALTH LAW","volume":"29 3-5","pages":"521-542"},"PeriodicalIF":0.8,"publicationDate":"2022-04-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10022041","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}

引用次数: 1

Genetics and Justice, Non-Ideal Theory and the Role of Patents: The Case of CRISPR-Cas9. 遗传学与正义，非理想理论和专利的作用:以CRISPR-Cas9为例。

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EUROPEAN JOURNAL OF HEALTH LAW Pub Date : 2022-04-08 DOI: 10.1163/15718093-bja10075

Oliver Feeney

引用次数: 0

A Room with a View (and with a Gene Therapy Drug): Gene Therapy Medicinal Products and Genetic Tourism in Europe. 一间有景观的房间(和一种基因治疗药物):欧洲的基因治疗药物产品和基因旅游。

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EUROPEAN JOURNAL OF HEALTH LAW Pub Date : 2022-04-08 DOI: 10.1163/15718093-bja10083

Vera Lúcia Raposo

引用次数: 0

The Object-Based and Process-Based Regulation of Genome Editing. 基于对象和基于过程的基因组编辑调控。

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EUROPEAN JOURNAL OF HEALTH LAW Pub Date : 2022-04-08 DOI: 10.1163/15718093-bja10078

Michal Koščík, Eliška Vladíková

{"title":"The Object-Based and Process-Based Regulation of Genome Editing.","authors":"Michal Koščík, Eliška Vladíková","doi":"10.1163/15718093-bja10078","DOIUrl":"https://doi.org/10.1163/15718093-bja10078","url":null,"abstract":"The article explores whether the broader regulatory framework applicable to the member states of the EU contains suitable tools to react to the rapid advances in science, especially as to the question of germline editing technologies. From the perspective of EU member states, the regulatory framework is fragmented between norms of international law, secondary EU law and national legislation. The rules and their interpretation are strongly influenced by the concept of precaution, which reflects the concern that there is not enough knowledge to assess the impact of genome editing technology on individuals, society and future populations. However, the argument of precaution loses its strength with every new scientific discovery. The expanding knowledge in the field creates the need to replace regulation, which is based on the lack of knowledge (such as precautionary moratoriums) by the regulation that is based on the actual knowledge. The article reaches a conclusion that the EU framework for advanced treatments and medicinal products is in a state where it can, in principle, address the questions associated with the safety and efficacy of germline editing technologies. The EU framework is, however, not suitable to assess the moral and societal impacts of new technology, which should be left for member states.","PeriodicalId":43934,"journal":{"name":"EUROPEAN JOURNAL OF HEALTH LAW","volume":"29 3-5","pages":"484-503"},"PeriodicalIF":0.8,"publicationDate":"2022-04-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10019384","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}

引用次数: 0

Regulating Heritable Human Genome Editing: Drawing the Line between Legitimate and Controversial Use. 调节可遗传的人类基因组编辑:在合法和有争议的使用之间划清界限。

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EUROPEAN JOURNAL OF HEALTH LAW Pub Date : 2022-04-08 DOI: 10.1163/15718093-bja10080

Noemi Conditi

引用次数: 0

The Application of EU Competition Law to the Exploitation of Human Genome Editing Technology. 欧盟竞争法在人类基因组编辑技术利用中的应用。

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EUROPEAN JOURNAL OF HEALTH LAW Pub Date : 2022-04-08 DOI: 10.1163/15718093-bja10077

Vladimir Bastidas Venegas

引用次数: 0