How should the legal framework for the protection of human genomic data be formulated?―Implications from the revision processes of the Act on the Protection of Personal Information (PPI Act).
How should the legal framework for the protection of human genomic data be formulated?―Implications from the revision processes of the Act on the Protection of Personal Information (PPI Act).
复制标题
人类基因组数据保护的法律框架应如何制定？——《个人信息保护法》（PPI法）修订过程的启示。
DOI：
10.1038/jhg.2014.121
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发表时间：
2015
影响因子：
3.5
通讯作者：
Masatomo Suzuki and Kazuto Kato
中科院分区：
文献类型：
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作者：
Natsuko Yamamoto;Minae Kawashima;Takanori Fujita;Masatomo Suzuki and Kazuto Kato
日本《个人信息保护法》（2003年《个人信息保护法》）目前正在修订中，1主要是由于信息和通信技术的发展显著增加了个人数据的性质和使用。事实上，数据的增长和全球移动已经促使世界各国重新考虑应该保护的个人数据类别以及应该如何保护这些数据。经济合作与发展组织、欧盟和美国通过重新考虑其监管环境，鼓励使用和应用个人信息。2-4 2003年的PPI法案规定了正确处理个人信息的一般义务，但对数据类型的定义很少，因此没有详细处理当前重要的个人数据，包括敏感数据和“大数据”。这些修正案旨在促进对多学科利用此类个人数据的讨论，以创造和促进日本的经济创新。[5] 2014年6月19日，《生产者价格保护法》修正案的总体纲要公布，公众意见征询期于7月24日结束。关于《生产者价格指数法》修正案的讨论几乎没有触及人类基因组数据问题。其中一个原因是，参与修订进程的人很少提出这个问题。另一个原因是，最终基因组数据被认为不适合任何类别的“个人信息”，包括一个新的
Japan’s Act on the Protection of Personal Information (PPI Act, 2003) is currently being amended, 1 largely due to information and communication technology developments that have markedly increased the nature and usage of personal data. Indeed, the growth and global movement of data have caused countries around the world to reconsider the categories of personal data that should be protected, and how they should be protected. The amendments also come in the wake of efforts by the Organization for Economic Co-operation and Development, European Union and the United States to encourage the use and application of personal information by reconsidering their regulatory environment. 2–4The PPI Act, 2003 provided for general obligations for proper handling of personal information with very few definition of data type, therefore have not treated currently important personal data including sensitive data and ‘big data’in detail. The amendments aim to stimulate the discussion for multidisciplinary utilization of such personal data to create and promote economic innovations in Japan. 5 The general outlines of the amendment of the PPI Act were made public in 2014 on 19 June and the period for public comment ended on 24 July. The discussion relating to the amendments of the PPI Act barely touched upon the issue of human genome data. One reason for this was that very few of those involved in the amendment process raised the issue. Another reason was that ultimately genome data were not considered to fit into any of the categories of ‘personal information’, including a new