Study of ELSI in human genomic research and the utilization of personal information in the personal genomic era

2015 Fiscal Year Final Research Report

• Project/Area Number: 25500005
• Research Category: Grant-in-Aid for Scientific Research (C)
• Allocation Type: Multi-year Fund
• Section: 一般
• Research Field: Bioethics
• Research Institution: Osaka University
• Principal Investigator: KURITA NATSUKO 大阪大学, 医学(系)研究科(研究院), 特任助教(常勤) (00379570)
• Project Period (FY): 2013-04-01 – 2016-03-31
• Keywords: ゲノム情報 / 個人情報保護法 / パーソナルゲノム / 次世代シーケンサー / 消費者ゲノム

Outline of Final Research Achievements

Due to the ever-increasing value of personal genomic information in the medical and health-related industries, huge amounts of genomic information from patients and consumers are beginning to be distributed and shared in Japan and abroad. In this study we examined and comparatively analyzed the discussions concerning the protection of personal genomic information during the creation of the EU data protection regulation and during Japan's revision of Personal Information Protection Laws. Our analysis showed that issues such as privacy protection and genetic discrimination were almost entirely absent from public discussions in Japan. Furthermore we saw that discussions that focused on the promotion of the scientific use of genomic information lacked sufficient consideration for ELSI issues. We presented our findings in several articles, discussed it with members of our working group, which consists of a wide range of stakeholders, and published a recommendation report for the government.

Free Research Field

生命倫理学