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The 5th ELSI Congress - ELSIcon2022

ELSIcon2022 Paper: The definition and handling of genomic data in a digitalized society: A Japanese perspective


ELSIcon2022 • Paper • May 27, 2022

Jusaku Minari


The development of genomic research increasingly contributes to the understanding, diagnosis, and treatment of various diseases, including cancers and rare illnesses. This trend is facilitated by a variety of analytical technologies and methods (e.g., genome-wide sequencing, polygenic risk scoring, and cloud computing) and is accelerated by the rapid sharing of genomic data both in domestic and global contexts. However, these enterprises raise significant ethical, legal, and social implications (ELSIs). Specifically, the handling of genomic data is under careful scrutiny. In fact, in the European Union and Japan, an increasing perspective exists to regulate genomic data related to personal data protection. In Japan, since non-legally binding governmental guidelines have been established in light of research ethics and robustly utilized in research communities, adjusting the concept of personal data protection and research ethics in the guidelines is an emerging challenge. This study focuses on the nature of Japan’s latest regulations, thus raising three key ELSIs: the relationship between personal data protection and research ethics, the scientific and social characteristics of genomic data, and the roles and responsibilities of research participants and genomic data providers. Given that both the digitalization of society and the use of genomic data are expected to increase in the future, this study’s exploration can be useful in considering the meaning and value of genomic data and in shaping debates on relevant regulations in different countries.


Education and public reception of genetic science

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