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KMID : 1234820180190030121
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Korean Society of Law and Medicine
2018 Volume.19 No. 3 p.121 ~ p.163
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Study on the Establishment of Domestic Healthcare Big Data Legislations -Focusing on the Guarantee of the Right to Know-*This research was supported by a grant of the Korea Health Technology R&D Project through the Korea Health Industry Development Institute (KHIDI), funded by the Ministry of Health & Welfare, Republic of Korea (grant number : HI16C2398)
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Lee Seo-Hyung
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Abstract
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The development of technology can free individuals from the restriction of reality, which is the same case in genomics research and precision medicine. However, the has been sufficiently demonstrated, and it is required to use health information for the development of such new medical technology. The principle for utilizing the personal information for different purposes from the specified one was to acquire the prior consent of the personal information use. However, the legislation related to the use of personal information has changed so that it imposes a responsibility of safely managing the personal information to the personal while gradually allowing the personal information to be used without the consent of the information subject. In addition, as the information and communication technology develops, the transfer of information gradually becomes free, and information processed in anonymity spreads widely in the form of provision to the third party. Thus, a series of situations in which information about individuals is processed in such an area that individuals cannot control presents a question about the legitimacy of the system for processing personal information. In this context, this paper suggests that it is necessary to know the whole process of processing personal information to earn individuals’ trust in the system for processing personal information. In other words, even if personal information is used in anonymized, unidentified, or pseudonymized form, it is difficult to determine that such processing completely eliminates the risk of privacy. Therefore, it is important to predict the flow of information processing, such as where and how such information is used and eliminated and the risks and benefits of providing and using such information to individuals. In particular, as the processing of sensitive information such as health information and genetic information is required, the right to know about the processing should be strongly guaranteed. Furthermore, it is difficult for information subjects to know the flow of their information and cope appropriately with the huge impact of new technologies on individuals in the era of big data. Therefore, individuals should know not only their own information but also the entire system of personal information use, in which information about individuals is circulated, processed, and returned to them from a macroscopic perspective. Individuals have protected their private spheres by excluding the interference by the government and others or through preliminary consent. Now, they should know the entire system in which personal information is used and ultimately participate in the construction of the system to guarantee the individuals’ right to protect the private spheres. In this regard, this paper examines the UK and Japan’s healthcare big data legislation and presents issues to be considered for establishing legislation that can be socially agreed for the use of big data by focusing on ensuring an individual’s-and individuals’- right to know about the process where health information is collected, analysed, and used.
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KEYWORD
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Big Data in Healthcare, Right to know, Right to Information Self-determination, Anonymization, De-identification
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FullTexts / Linksout information
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Listed journal information
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