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KMID : 1172020170180010047
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Journal of Korean Bioethics Association
2017 Volume.18 No. 1 p.47 ~ p.62
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Current status and recommendations for protection of genetic data in human material banks in the Republic of Korea - focus on the field survey by Center for Ethical, Legal and Social Implications (ELSI) in 2015 -
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Lee Yeon-Ho
Jeong Chang-Rok
Kim So-Yoon
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Abstract
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This study on human material banks was conducted by the 2015 Center for Ethical, Legal and Social Implications. As part of a field study, we visited human material banks and researchers and conducted research using a semi-structured questionnaire. It is focused on privacy protection, such as collection of human material, informed consent, security, training, and international data sharing. The results showed each human material bank is managed according to its own guidelines. However, the study also revealed a need to improve the training system focused on human material banks, managing system after distribution, and working system for main employee.
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KEYWORD
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ELSI Center, human material bank, Gemone Research, Genetic data, privacy data protection, a field study
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