| Project/Area Number |
15K19149
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| Research Category |
Grant-in-Aid for Young Scientists (B)
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| Allocation Type | Multi-year Fund |
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| Research Field |
Medical sociology
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| Research Institution | Kyoto University (2017-2018)
Osaka University (2015-2016) |
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Principal Investigator |
Minari Jusaku 京都大学, iPS細胞研究所, 特定准教授 (60635332)
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| Project Period (FY) |
2015-04-01 – 2019-03-31
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| Project Status |
Completed (Fiscal Year 2018)
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| Budget Amount *help |
¥3,640,000 (Direct Cost: ¥2,800,000、Indirect Cost: ¥840,000)
Fiscal Year 2018: ¥910,000 (Direct Cost: ¥700,000、Indirect Cost: ¥210,000)
Fiscal Year 2017: ¥910,000 (Direct Cost: ¥700,000、Indirect Cost: ¥210,000)
Fiscal Year 2016: ¥910,000 (Direct Cost: ¥700,000、Indirect Cost: ¥210,000)
Fiscal Year 2015: ¥910,000 (Direct Cost: ¥700,000、Indirect Cost: ¥210,000)
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| Keywords | 倫理的・法的・社会的課題 / パーソナルゲノム / 市民参画 / 研究ガバナンス / 科学技術政策 / デジタルガバナンス / ELSI / パブリック・エンゲージメント / 電子的IC / e-ガバナンス |
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| Outline of Final Research Achievements |
New technologies to sequence and analyze genome information enable us to implement genome research and genome medicine in a more precise manner. While these technologies can play a key role in understanding of diseases and providing us with personalized clinical care, they also have ethical, legal and social implications. To address these issues, this study has considered the nature of proactively involving research participants, such as healthy individuals and patients, by specifically focusing on the utilization of information and communication technology (ICT). The study has identified emerging key issues of translational genome research in Japan, the US and the UK in light of ethical and policy aspects and considered the potential to use ICT for solving these issues. Furthermore, based on these results, it has suggested some major points for the revision of governmental ethical guidelines of genome research.
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| Academic Significance and Societal Importance of the Research Achievements |
ゲノム研究やゲノム医療に関する科学的な側面は進展が目覚ましいものの、倫理的・法的・社会的側面については対応が必ずしも間に合ってはいない。本研究は、国際的に注目が集まり始めている、ICTを介した研究協力者の研究参画のあり方に取り組むものであり、今後のゲノム研究やゲノム医療の営みに寄与する学術的成果といえる。またこの検討においては、潜在化・顕在化する倫理的・法的・社会的課題の抽出と行政指針という規制・規律への示唆を踏まえているため、実社会に資する研究成果ともいえる。
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