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凝聚基因组团结力量,促进全球健康公平。

Commoning genomic solidarity to improve global health equality.

作者信息

Zhang Joy Y

机构信息

Centre for Global Science and Epistemic Justice, Division for the Study of Law, Society and Social Justice, University of Kent, Canterbury, UK.

出版信息

Cell Genom. 2023 Sep 28;3(10):100405. doi: 10.1016/j.xgen.2023.100405. eCollection 2023 Oct 11.

DOI:10.1016/j.xgen.2023.100405
PMID:37868031
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC10589616/
Abstract

This article underlines two key asynchronies between prevailing governing logic and expanding practices in somatic human genome editing that are hindering an effective and orderly translation of the new technology into public good. The first is a "genomic sovereignty" framing adopted by a number of non-Western countries that may exacerbate data biases in global research and that directs policy attention away from the necessary structural changes required to achieve non-discriminatory and equitable genomic healthcare. The other is a global deficiency in attending to "science at large": the challenge of regulating new assemblages of societal interests that advocate controversial or experimental research, often outside of conventional institutions and aided by "policy shopping." Both issues point to the fact that genomic research does not represent a well-defined scientific commons but rather a domain that requires active "commoning," with the aim of fostering genomic solidarity that coordinates responsible research within and across national boundaries.

摘要

本文强调了当前治理逻辑与人类体细胞基因组编辑不断扩展的实践之间的两个关键不同步之处,这些不同步正在阻碍新技术有效且有序地转化为公共利益。第一个是一些非西方国家采用的“基因组主权”框架,这可能会加剧全球研究中的数据偏差,并使政策关注偏离实现非歧视性和公平基因组医疗所需的必要结构变革。另一个是全球在关注“整体科学”方面的不足:监管新出现的社会利益组合面临挑战,这些组合倡导有争议的或实验性研究,通常在传统机构之外进行,并借助“政策套利”。这两个问题都表明,基因组研究并非一个定义明确的科学公共领域,而是一个需要积极进行“公有化”的领域,目的是促进基因组团结,以协调国内外负责任的研究。

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The gene-therapy revolution risks stalling if we don't talk about drug pricing.如果我们不谈论药品定价,基因治疗革命可能会停滞不前。
Nature. 2023 Apr;616(7958):629-630. doi: 10.1038/d41586-023-01389-z.
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China expands control over genetic data used in scientific research.中国加强对科研中使用的基因数据的管控。
Nature. 2022 May;605(7910):405. doi: 10.1038/d41586-022-01230-z.
3
GA4GH: International policies and standards for data sharing across genomic research and healthcare.全球基因组与健康联盟(GA4GH):跨基因组研究与医疗保健领域数据共享的国际政策与标准。
Cell Genom. 2021 Nov 10;1(2). doi: 10.1016/j.xgen.2021.100029.
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Gene therapies should be for all.基因疗法应该面向所有人。
Nat Med. 2021 Aug;27(8):1311. doi: 10.1038/s41591-021-01481-9.
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Genetic discrimination: introducing the Asian perspective to the debate.基因歧视:将亚洲视角引入辩论
NPJ Genom Med. 2021 Jul 1;6(1):54. doi: 10.1038/s41525-021-00218-4.
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The Brazilian Initiative on Precision Medicine (BIPMed): fostering genomic data-sharing of underrepresented populations.巴西精准医学倡议(BIPMed):促进代表性不足人群的基因组数据共享。
NPJ Genom Med. 2020 Oct 2;5:42. doi: 10.1038/s41525-020-00149-6. eCollection 2020.
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A Review on the Challenges in Indian Genomics Research for Variant Identification and Interpretation.印度基因组学研究中变异识别与解读面临的挑战综述
Front Genet. 2020 Jul 22;11:753. doi: 10.3389/fgene.2020.00753. eCollection 2020.
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Sponsorship and Funding for Gene Therapy Trials in the United States.美国基因治疗试验的赞助和资金来源。
JAMA. 2020 Mar 3;323(9):890-891. doi: 10.1001/jama.2019.22214.
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Science. 2019 Jul 5;365(6448):34-36. doi: 10.1126/science.aax3248.