International data-sharing norms: from the OECD to the General Data Protection Regulation (GDPR).
International data-sharing norms: from the OECD to the General Data Protection Regulation (GDPR).
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DOI：
10.1007/s00439-018-1919-7
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发表时间：
2018-08
期刊：
影响因子：
5.3
通讯作者：
Phillips M
中科院分区：
文献类型：
--
作者：
Phillips M
基因组研究的发展及其与临床实践的整合，随着它们成为国际性甚至全球性的努力，已经把我们带到了一个地方，科学家和临床医生现在可能只会忽视管理国际数据共享的规则。一方面，开放数据政策越来越多地要求其他国家基因组数据的保管人尽可能广泛地提供这些数据，包括向其他国家的研究人员提供。另一方面，数据保护法已成为跨司法管辖区共享个人数据的重大障碍。这两个相互竞争的职责之间的空间正在缩小。与本卷中探讨数据共享和数据保护的现在和未来的其他文本相比，本文的重点是过去。它集中于迄今为止有关个人数据国际传输的数据保护规则的历史发展。本文的目的是把重点放在已经影响并将继续影响数据保护规则应用于基因组学和健康领域的方式，以及数据保护的未来发展的基本目标。本文第一部分介绍了自1970年以来国际数据共享数据保护规则的发展。第二部分考虑了在基因组学和健康的具体情况下适用一般数据保护规则的困难。第三部分也是最后一部分从基因组学的角度比较了遵守欧盟通用数据保护条例中规定的国际转移限制的可用选项。
The evolution of genomic research and its integration into clinical practice, as they become international—even global—endeavors, has brought us to a place where scientists and clinicians may now only ignore the rules governing international data sharing at their own peril. Open data policies, on the one hand, increasingly require custodians of others’ genomic data to make it as widely available as feasible, including to researchers in other countries. Data protection law, on the other, has become a significant hurdle to the sharing of personal data across jurisdictional borders. The space between these two competing duties is narrowing. In contrast with the other texts in this volume, which explore the present and future of data sharing and data protection, this article’s focus is on the past. It centres on the historical development of the data protection rules regarding the international transfer of personal data up to the present. The article’s aim is to bring into focus the underlying objectives that have influenced and that will continue to influence the way that data protection rules are applied to the fields of genomics and health, as well as future developments in data protection generally. The first part of this article describes the development of international data-sharing data protection rules since 1970. The second considers difficulties in applying general data protection rules to the specific context of genomics and health. The third and final part compares the options available to comply with the international transfer restrictions set out in the standard-setting EU General Data Protection Regulation from a genomics perspective.
影响因子：
2.1
作者：
Stoddart, Jennifer;Chan, Benny;Joly, Yann
通讯作者：
Joly, Yann
影响因子：
16.6
作者：
Naveed, Muhammad;Ayday, Erman;Wang, Xiaofeng
通讯作者：
Wang, Xiaofeng
DOI：
10.1001/virtualmentor.2009.11.12.mhst1-0912
发表时间：
2009-12-01
期刊：
The virtual mentor : VM
影响因子：
--
作者：
Oppenheimer, Gerald M;Bayer, Ronald
通讯作者：
Bayer, Ronald