Conclusion: harmonisation in genomic and health data sharing for research: an impossible dream?
Conclusion: harmonisation in genomic and health data sharing for research: an impossible dream?
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DOI：
10.1007/s00439-018-1924-x
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发表时间：
2018-08
期刊：
影响因子：
5.3
通讯作者：
Townend D
中科院分区：
文献类型：
--
作者：
Townend D
基因组学和健康数据共享在研究和治疗中对整个社会的个体有明显的好处。与此同时，公民对数据共享有不同的期望和担忧。与研究伦理和实践有关的国际立法，特别是数据保护，创造了一个特殊的环境，正如本期特刊第二部分的文章所见，迫切需要在程序层面和基本概念层面上进行协调。数据共享法则正朝着不同的方向发展。本文提出了“协调，一个不可能实现的梦想？”的问题，答案是肯定的“不”。本文反思了特刊第二部分的论文中可以看到的内容。然后，它确定了新的欧盟《通用数据保护条例》中概念不确定性的三个主要领域（不是因为它比其他司法管辖区具有优越性，而是因为它是数据保护法的最新修订，使得普遍的概念问题不明确）。此后，讨论了人工智能解决一些缺点的潜力。本文最后考虑了可以实现数据共享协调的条件：理解人权方法和公民在考虑“公共利益”时的敏感性；作为团结基础的社会自由主义；以及‘研究员’这个职业。
There are clear benefits from genomics and health data sharing in research and in therapy for individuals across societies. At the same time, citizens have different expectations and fears about that data sharing. International legislation in relation with research ethics and practice and, particularly, data protection create a particular environment that, as is seen in the articles in part two of this special issue, are crying out for harmonisation both at a procedural but at fundamental conceptual levels. The law of data sharing is pulling in different directions. This paper poses the question, ‘harmonisation, an impossible dream?’ and the answer is a qualified ‘no’. The paper reflects on what can be seen in the papers in part two of the special issue. It then identifies three major areas of conceptual uncertainty in the new EU General Data Protection Regulation (not because it has superiority over other jurisdictions, but because it is a recent revision of data protection law that leaves universal conceptual questions unclear). Thereafter, the potential for Artificial Intelligence to meet some of the shortcomings is discussed. The paper ends with a consideration of the conditions under which data sharing harmonisation might be achieved: an understanding of a human rights approach and citizen sensitivities in considering the ‘public interest’; social liberalism as a basis of solidarity; and the profession of ‘researcher’.
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影响因子：
5.3
作者：
Knoppers, Bartha M.;Harris, Jennifer R.;Dove, Edward S.
通讯作者：
Dove, Edward S.
影响因子：
5.7
作者：
Roelofs, Erik;Dekker, Andre;Lambin, Philippe
通讯作者：
Lambin, Philippe
影响因子：
9.8
作者：
Wilkinson MD;Dumontier M;Aalbersberg IJ;Appleton G;Axton M;Baak A;Blomberg N;Boiten JW;da Silva Santos LB;Bourne PE;Bouwman J;Brookes AJ;Clark T;Crosas M;Dillo I;Dumon O;Edmunds S;Evelo CT;Finkers R;Gonzalez-Beltran A;Gray AJ;Groth P;Goble C;Grethe JS;Heringa J;'t Hoen PA;Hooft R;Kuhn T;Kok R;Kok J;Lusher SJ;Martone ME;Mons A;Packer AL;Persson B;Rocca-Serra P;Roos M;van Schaik R;Sansone SA;Schultes E;Sengstag T;Slater T;Strawn G;Swertz MA;Thompson M;van der Lei J;van Mulligen E;Velterop J;Waagmeester A;Wittenburg P;Wolstencroft K;Zhao J;Mons B
通讯作者：
Mons B
影响因子：
3.1
作者：
Deist TM;Jochems A;van Soest J;Nalbantov G;Oberije C;Walsh S;Eble M;Bulens P;Coucke P;Dries W;Dekker A;Lambin P
通讯作者：
Lambin P
影响因子：
1.1
作者：
Damiani, Andrea;Masciocchi, Carlotta;Valentini, Vincenzo
通讯作者：
Valentini, Vincenzo