Suppr超能文献

欧洲的基因组数据共享步履蹒跚——行为准则能防止其衰落吗?

Genomic data sharing in Europe is stumbling-Could a code of conduct prevent its fall?

作者信息

Molnár-Gábor Fruzsina, Korbel Jan O

机构信息

Heidelberg Academy of Sciences and Humanities, Heidelberg, Germany.

European Molecular Biology Laboratory, Genome Biology Unit, Heidelberg, Germany.

出版信息

EMBO Mol Med. 2020 Mar 6;12(3):e11421. doi: 10.15252/emmm.201911421. Epub 2020 Feb 18.

Abstract

Genomic data sharing is becoming more important as scientists join forces across borders in biomedical research for the benefit of patients and society. The EU's General Data Protection Regulation (GDPR) helps simplify sharing of such data at the European and international level. However, initial optimism has dried up as EU member states go their own ways in implementing the GDPR into national laws, and as legal cases challenging data sharing reach courts. Codes of conduct could facilitate data sharing in Europe and better connect it to global health research. This commentary explains the potential of codes of conduct for addressees and drafters. Codes are no panacea though; other measures may be necessary to ensure that Europe remains collaborative and competitive in biomedical research. Nevertheless, codes of conduct would bring immediate benefits and, in the long term, could foster a true European ecosystem for joint biomedical research and easier international data sharing.

摘要

随着科学家们跨越国界携手开展生物医学研究以造福患者和社会,基因组数据共享正变得愈发重要。欧盟的《通用数据保护条例》(GDPR)有助于在欧洲和国际层面简化此类数据的共享。然而,随着欧盟成员国各自为政地将GDPR纳入国内法,以及质疑数据共享的法律案件诉诸法庭,最初的乐观情绪已然消散。行为准则可以促进欧洲的数据共享,并使其更好地与全球卫生研究相联系。本评论解释了行为准则对受众和起草者的潜在作用。不过,准则并非万灵药;可能还需要其他措施来确保欧洲在生物医学研究中保持协作性和竞争力。尽管如此,行为准则将带来立竿见影的好处,从长远来看,还可以培育一个真正的欧洲联合生物医学研究生态系统,并使国际数据共享更加便捷。

相似文献

引用本文的文献

8
Apropos Data Sharing: Abandon the Distrust and Embrace the Opportunity.论数据共享:摒弃疑虑,把握机遇。
DNA Cell Biol. 2022 Jan;41(1):11-15. doi: 10.1089/dna.2021.0501. Epub 2021 Dec 23.

本文引用的文献

1
Germline Elongator mutations in Sonic Hedgehog medulloblastoma.胚系延伸酶突变与 Sonic Hedgehog 型髓母细胞瘤。
Nature. 2020 Apr;580(7803):396-401. doi: 10.1038/s41586-020-2164-5. Epub 2020 Apr 1.
3
Pan-cancer analysis of whole genomes.泛癌症全基因组分析。
Nature. 2020 Feb;578(7793):82-93. doi: 10.1038/s41586-020-1969-6. Epub 2020 Feb 5.
4
Germline Mutations Predispose to Pediatric Medulloblastoma.胚系突变使儿童罹患成神经管细胞瘤。
J Clin Oncol. 2020 Jan 1;38(1):43-50. doi: 10.1200/JCO.19.00577. Epub 2019 Oct 14.
6
Model consent clauses for rare disease research.为罕见病研究制定同意条款。
BMC Med Ethics. 2019 Aug 1;20(1):55. doi: 10.1186/s12910-019-0390-x.
10
The Human Cell Atlas.人类细胞图谱
Elife. 2017 Dec 5;6:e27041. doi: 10.7554/eLife.27041.

文献检索

告别复杂PubMed语法,用中文像聊天一样搜索,搜遍4000万医学文献。AI智能推荐,让科研检索更轻松。

立即免费搜索

文件翻译

保留排版,准确专业,支持PDF/Word/PPT等文件格式,支持 12+语言互译。

免费翻译文档

深度研究

AI帮你快速写综述,25分钟生成高质量综述,智能提取关键信息,辅助科研写作。

立即免费体验