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KMID : 1172020180190020057
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Journal of Korean Bioethics Association
2018 Volume.19 No. 2 p.57 ~ p.76
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Privacy Issues in Large-Scale Genomics Research
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Cho Eun-Hee
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Abstract
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The privacy of a participant in genomics research can be protected by preventing direct information leakage and making it impossible to trace the person using information in the public database. Genomic information is unique enough that one may identify an individual either directly using the information or by aggregating it with multiple sources of other information. Thus, preventing the identification of specific individuals with genomic data is of great concern in genomics research. This study investigated representative large-scaled genomics research projects to examine how the privacy-related risks of participating in large-scaled genomics research are communicated with participants. Specifically, this study reviews the informed consent forms and/or supplementary information sheets of the 1,000 Genomes Project, the UK Biobank, the USA Precision Medicine Cohort 'All of Us', and Korean Genome and Epidemiology Study. Information on the identifiability of genetic information was provided to the participants only in the 1,000 Genomes Project. The UK Biobank, USA Precision Medicine Cohort, and Korean Genome and Epidemiology Study focused on the risk of information leakage and described detailed measures to deal with this issue such as the de-identification and anonymization of direct identifiers. However, recent studies confirmed that de-identification methods does not provide sufficient protection for privacy in genomic research because genetic data could be re-identified when matched with reference genotype and/or linked to non-genetic databases. Therefore, future genomics research should provide more detailed information on the potential risks to their participants, including the potential re-identification of genomic information.
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KEYWORD
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Genetic information, Genomics, Informed consent, Genetic privacy, Biobank, Precision Medicine, Responsibility of researchers
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