The ethics of genomic medicine: redefining values and norms in the UK and France.
The ethics of genomic medicine: redefining values and norms in the UK and France.
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DOI：
10.1038/s41431-020-00798-2
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发表时间：
2021-05
期刊：
影响因子：
--
通讯作者：
UK-FR GENE (Genetics and Ethics Network) Consortia
中科院分区：
文献类型：
--
作者：
Gaille M;Horn R;UK-FR GENE (Genetics and Ethics Network) Consortia
本文介绍了英国-法国基因组学和伦理网络（UK-FR基因），这已经建立了反映在英国和法国的常规临床护理基因组学的整合所产生的伦理和社会问题的联合立场。2018年，两国宣布加强国家战略、英国基因组学和法国计划2025年基因组学之间的合作，这为研究基因组医学和相关政策在不同国家背景下的影响提供了一个独特的机会。本文件首先介绍了这两项国家战略以及每个国家所涉及的规范、价值观和原则。它讨论了基因组医学对已建立的关系和现有法规的影响，并研究了其对公共卫生系统的团结和信任的影响。最后，它使用社会契约作为分析的透镜，探讨和重新定义基因组医学背景下的个人权利和集体义务之间的平衡。本文得出三个主要结论：（1）尽管两国的战略处于不同的实施阶段，但两国面临着相似的伦理问题;（2）两国都试图通过以自己的方式（重新）定义个人权利和集体义务来解决这些问题;（3）社会契约为分析英国和法国如何应对基因组学带来的伦理挑战提供了有用的工具。这一概述为英国和法国之间未来的深入比较奠定了基础，并推动了合作研究。
This paper presents a joint position of the UK-France Genomics and Ethics Network (UK-FR GENE), which has been set up to reflect on the ethical and social issues arising from the integration of genomics into routine clinical care in the UK and France. In 2018, the two countries announced enhanced cooperation between their national strategies, Genomics England and Plan France Médecine Génomique 2025, which offers a unique opportunity to study the impact of genomic medicine and relevant policies in different national contexts. The paper provides first insights into the two national strategies and the norms, values and principles at stake in each country. It discusses the impact of genomic medicine on established relationships and existing regulations, and examines its effects on solidarity and trust in public healthcare systems. Finally, it uses the social contract as an analytical lens to explore and redefine the balance between individual rights and collective duties in the context of genomic medicine. This paper leads to three key observations: (1) despite each country’s strategy being at a different stage of implementation, the two countries face similar ethical issues; (2) each country tries to solve these issues by (re-)defining individual rights and collective duties in its own way; (3) the social contract presents a useful tool to analyse the ways the UK and France address the ethical challenges raised by genomics. This overview lays the groundwork for future in-depth comparison, and drive collaborative research, between the UK and France.
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DOI：
10.1038/s41431-018-0285-1
发表时间：
2019-03
期刊：
European journal of human genetics : EJHG
影响因子：
--
作者：
Carrieri D;Howard HC;Benjamin C;Clarke AJ;Dheensa S;Doheny S;Hawkins N;Halbersma-Konings TF;Jackson L;Kayserili H;Kelly SE;Lucassen AM;Mendes Á;Rial-Sebbag E;Stefánsdóttir V;Turnpenny PD;van El CG;van Langen IM;Cornel MC;Forzano F;European Society of Human Genetics
通讯作者：
European Society of Human Genetics
DOI：
10.1016/j.atg.2016.06.001
发表时间：
2016-09
期刊：
Applied & translational genomics
影响因子：
--
作者：
Endrullat, Christoph;Glokler, Jorn;Franke, Philipp;Frohme, Marcus
通讯作者：
Frohme, Marcus
影响因子：
1.8
作者：
Koski, CA
通讯作者：
Koski, CA
影响因子：
1.7
作者：
Chadwick R;Wilson D
通讯作者：
Wilson D
影响因子：
1.9
作者：
Hylind, Robyn;Smith, Maureen;Aufox, Sharon
通讯作者：
Aufox, Sharon