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KMID : 1172020180190020039
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Journal of Korean Bioethics Association
2018 Volume.19 No. 2 p.39 ~ p.56
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Precision Medicine and Protection of Personal Information
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Choi Kyung-Suk
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Abstract
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Precision medicine is a new paradigm of medical service based on various mass personal information often including human material. However, the development of big data brings about some worries on protection of personal private information as well as realization of precision medicine. Collecting personal private information follows the practice of obtaining informed consent. But some who use such information intend to collect it through the waiver of informed consent or without consent appealing to the concept that de-identified personal information is not personal private information. I raised a question of whether research on precision medicine can be carried out through the waiver of consent when we consider characteristics of information it pursues. I argue that the technology of big data makes us reconsider the concept that de-identified personal information is not personal private information. With the consideration of domestic acts, American regulations, and EU regulation, I argue that those current regulations on the waiver of informed consent and the concept of de-identification will be applied to particular cases with the consideration of the purpose of using personal information and the features of combined additional information, that de-identification is not enough to protect privacy in the era of big date because even anonymised personal information may become identifiable, and that we need the system to monitor the flow and management of information. In addition, we need to reconsider a research paradigm such as donation in obtaining personal information because information in itself is a material for commercialization in precision medicine.
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KEYWORD
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Precision medicine, big data, personal information, de-identification, pseudonymisation, privacy
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