Research on Bioethics in the Era of Genome Design

2022 Fiscal Year Final Research Report

• Project/Area Number: 19K21566
• Research Category: Grant-in-Aid for Challenging Research (Exploratory)
• Allocation Type: Multi-year Fund
• Review Section: A New Phase of Our Advanced Science and Technology Society
• Research Institution: Kyoto University
• Principal Investigator: Minari Jusaku 京都大学, iPS細胞研究所, 特定准教授 (60635332)
• Co-Investigator(Kenkyū-buntansha): 小門 穂 神戸薬科大学, 薬学部, 准教授 (20706650) ; 木村 めぐみ 公益財団法人未来工学研究所, 研究センター, 研究員 (50711579)
• Project Period (FY): 2019-06-28 – 2023-03-31
• Keywords: 規律 / ELSI / ゲノム情報

Outline of Final Research Achievements

The historical analysis of governmental regulations for genome research in Japan was one of the main achievements of this study. Specifically, while the development of a set of guidelines was originally undertaken to establish and promote a particular research project, the fundamental principles of the human genome and genome research were established around the same time. By utilizing these two streams (i.e., the concepts and frameworks of the guidelines and fundamental principles), the enactment of another set of guidelines that are more general while containing specific provisions was achieved. This analysis indicated that the formation of these regulations was influenced by several international movements, including the promotion of the Human Genome Project launched in 1990 and the adoption of the Universal Declaration on the Human Genome and Human Rights at UNESCO's 29th General Conference in 1997.

Free Research Field

生命倫理

Academic Significance and Societal Importance of the Research Achievements

先端生命科学や先端医科学といった領域における規律は、国内外の様々な要因により影響を受け、しばしば改正や統合が行われている状況にある。本研究では、このような規律のあり方を主軸として、規律の発足経緯や関連領域における動向等について分析・考察し、今後の規律の検討に資する基礎的知見を提示した。また本研究課題で対象にした行政指針と個人情報保護法との調整は、今後も検討が求められる重要な論点であるため、本研究の取り組みにはある程度の社会的意義があるものと考える。