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KMID : 0986720160240020069
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Korean Journal of Medicine and Law
2016 Volume.24 No. 2 p.69 ~ p.101
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A Study on Legal Framework for Secondary Use of Public Data in Scientific Research on Health : Focusing on Secondary Use of Bio·Medical Information and Genomics Data
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Park Mi-Jeong
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Abstract
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The aim of this study is to suggest how to strike a balance between the benefits of secondary use of public data and rights of self-determination for other purposes that within frameworks of personal data protection laws. Particularly, the research sought to find common ground between private rights and public interest by specifying privacy issues which could be threatened by secondary use of sensitive information such as bio or medical information.
Each public agency uses aggregated databases which enable extraction of new meanings and utilization of individual dataset. While not new, these issues play increasingly critical and complex roles given that the Information and Communication Technology Revolution has created a dilemma regarding individual privacy. The nature of the utilization of public data from the database by various public agencies causes them to hold and collect personal information beyond the primary purposes in common databases as secondary use of personal information, incurring serious cases of legal violation of information usage. Essentially all bio or medical information in public agencies are sensitive and require protection in varying degrees. Theoretically, only limited processing of such information is allowed, and no special laws can exempt consent. In other words, priority is given to a subject"s right of self-determination.
The idea concerning privacy and public interest is embedded within a complementary ‘using vs. protecting’ concept that is not trusted by the owner(s) of the data. There is clearly a need to consider whether the Government is balancing this critically important relationship between data subjects and personal information and whether the current approach is fit for its purpose.
The current special law in place exempts written consent upon approval of Institutional Bioethics Committee, thereby allowing researchers to utilize data for secondary use without consenting process. Nonetheless, in such case of exemption, the principle of proportionality should be met by allowing a subject to practice his or her right of self-determination. As the secondary use of personal information is randomly scattered in the database of the public and collected beyond primary purposes, the minimized use of personal information protected by common law is likely to be violated with the absent clarity in the norms of secondary usage of personal information. Laws to protect personal information protect the interests of the people by requiring consent at every step of information process. Secondary use, however, does not require consent according to a special law that exempts such condition. The problem is exacerbated when every public agency adheres to different special laws that reflect the objectives of each agency.
Restricting the right of self-determination on sensitive information such as bio or medical information must notify subjects the purposes in which their information will serve and how the information is being processed. Whether purpose is justifiable for the sake of public is directly related to the roles of Data Protection Authorities which deliberates the process of secondary use.
In the new phase of the secondary use of public information, this study attempts to balance between public interest and private rights as well as ‘using’ and ‘protecting’ through the review procedures to ensure the data subject’s rights including the broad consent to entrust personal data processing in case of substitution
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KEYWORD
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Public Data, Secondary Use, Privacy, Bio·Medical Information, Genomics Data
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FullTexts / Linksout information
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Listed journal information
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