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Research on Bioethics in the Era of Genome Design

Research Project

Project/Area Number 19K21566
Research Category

Grant-in-Aid for Challenging Research (Exploratory)

Allocation TypeMulti-year Fund
Review Section A New Phase of Our Advanced Science and Technology Society
Research InstitutionKyoto 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
Project Status Completed (Fiscal Year 2022)
Budget Amount *help
¥6,370,000 (Direct Cost: ¥4,900,000、Indirect Cost: ¥1,470,000)
Fiscal Year 2021: ¥2,210,000 (Direct Cost: ¥1,700,000、Indirect Cost: ¥510,000)
Fiscal Year 2020: ¥2,210,000 (Direct Cost: ¥1,700,000、Indirect Cost: ¥510,000)
Fiscal Year 2019: ¥1,950,000 (Direct Cost: ¥1,500,000、Indirect Cost: ¥450,000)
Keywords規律 / ELSI / ゲノム情報 / 規範 / 生命倫理 / ゲノム
Outline of Research at the Start

生命科学の発展は社会に恩恵だけでなく不利益をももたらし得る。最近では、植物や動物、人間を含め、生物の遺伝情報を容易に読み取れるため、このような遺伝情報をどのように取り扱っていくかが国際的に重要な論点となってきている。特に最近のゲノム編集技術やゲノム合成技術を用いることにより、様々な生物の遺伝情報を人為的に改変できるため、どのような改変をどのように認めていくかについて議論が必要になってきている。この研究では、最先端の生命科学の動向を調べつつ、社会的に求められる規範やルールのあり方について国際的な視点から検討する。

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.

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。

Report

(5 results)
  • 2022 Annual Research Report   Final Research Report ( PDF )
  • 2021 Research-status Report
  • 2020 Research-status Report
  • 2019 Research-status Report
  • Research Products

    (32 results)

All 2023 2022 2021 2020 2019

All Journal Article (11 results) (of which Int'l Joint Research: 4 results,  Peer Reviewed: 6 results,  Open Access: 4 results) Presentation (20 results) (of which Int'l Joint Research: 7 results,  Invited: 7 results) Book (1 results)

  • [Journal Article] Old and new challenges regarding comparable and viable data sharing in population-scale genomic research2023

    • Author(s)
      Raz A, Minari J, Takashima K, Gaydarska H, Hashiloni-Dolev Y, Horn R.
    • Journal Title

      European Journal of Human Genetics

      Volume: Epub ahead of print Issue: 6 Pages: 617-618

    • DOI

      10.1038/s41431-023-01355-3

    • Related Report
      2022 Annual Research Report
    • Peer Reviewed / Int'l Joint Research
  • [Journal Article] Challenges for precision public health communication in the era of genomic medicine2022

    • Author(s)
      Raz A, Timmermans S, Eyal G, Brothers K, Minari J.
    • Journal Title

      Genetics in Medicine

      Volume: 24 Issue: 9 Pages: 9-9

    • DOI

      10.1016/j.gim.2022.05.010

    • Related Report
      2022 Annual Research Report
    • Peer Reviewed / Int'l Joint Research
  • [Journal Article] Gamete donation in the time of DNA surprises2022

    • Author(s)
      Adrian Stine W.、Ravn Tine、Herrmann Janne Rothmar、Sylvest Randi、Kokado Minori、Semba Yukari、Fencker Mads、Skytte Anne‐Bine、Sellmer Anette、Gronbaek Emma、Wahlberg Ayo、Kesmodel Ulrik
    • Journal Title

      Acta Obstetricia et Gynecologica Scandinavica

      Volume: 101 Issue: 12 Pages: 1348-1350

    • DOI

      10.1111/aogs.14483

    • Related Report
      2022 Annual Research Report
    • Open Access / Int'l Joint Research
  • [Journal Article] Looking back: three key lessons from 20 years of shaping Japanese genome research regulations2021

    • Author(s)
      Minari J, Yokono M, Takashima K, Kokado M, Ida R, Hishiyama Y.
    • Journal Title

      Journal of Human Genetics

      Volume: 66 Issue: 3 Pages: 1039-1041

    • DOI

      10.1017/s0963180104133070

    • Related Report
      2021 Research-status Report
    • Peer Reviewed / Open Access
  • [Journal Article] Reflection on the enactment and impact of safety laws for regenerative medicine in Japan2021

    • Author(s)
      Takashima K, Morrison M, Minari J.
    • Journal Title

      Stem Cell Reports

      Volume: 16 Issue: 6 Pages: 1425-1435

    • DOI

      10.1016/j.stemcr.2021.04.017

    • Related Report
      2021 Research-status Report
    • Peer Reviewed / Open Access
  • [Journal Article] ゲノム情報と研究, 社会2021

    • Author(s)
      三成寿作
    • Journal Title

      Bio Clinica

      Volume: 36 Pages: 51-55

    • Related Report
      2020 Research-status Report
  • [Journal Article] フランス生命倫理法2021年改正の動向2021

    • Author(s)
      小門穂
    • Journal Title

      医事法研究

      Volume: 3 Pages: 121-129

    • NAID

      40022573117

    • Related Report
      2020 Research-status Report
  • [Journal Article] ヒト受精胚を対象とするゲノム編集に関する規制の動向2020

    • Author(s)
      加藤和人, 小門穂, 濱川菜桜
    • Journal Title

      医学のあゆみ

      Volume: 273 Pages: 902-908

    • Related Report
      2020 Research-status Report
  • [Journal Article] Meaning of Ambiguity: A Japanese Survey on Synthetic Biology and Genome Editing2019

    • Author(s)
      Hibino A, Yoshizawa G and Minari J
    • Journal Title

      Frontiers in Sociology

      Volume: 4 Pages: 81-81

    • DOI

      10.3389/fsoc.2019.00081

    • Related Report
      2019 Research-status Report
    • Peer Reviewed / Open Access
  • [Journal Article] Dynamic Consent: An Evaluation and Reporting Framework2019

    • Author(s)
      Prictor M, Lewis MA, Newson AJ, Haas M, Baba S, Kim H, Kokado M, Minari J, Molnar-Gabor F, Yamamoto B, Kaye J and Teare HJA
    • Journal Title

      Journal of Empirical Research on Human Research Ethics

      Volume: - Issue: 3 Pages: 175-186

    • DOI

      10.1177/1556264619887073

    • Related Report
      2019 Research-status Report
    • Peer Reviewed / Int'l Joint Research
  • [Journal Article] フランスにおける性別表記変更の脱医療化─21世紀司法の現代化法のインパクト2019

    • Author(s)
      小門穂
    • Journal Title

      ジェンダー法研究

      Volume: 6 Pages: 157-165

    • Related Report
      2019 Research-status Report
  • [Presentation] A Japanese perspective on regulation and public communication regarding human-virus research2023

    • Author(s)
      Minari J, Kiriyama A.
    • Organizer
      Cell Symposium: Viruses in Health and Disease 2023
    • Related Report
      2022 Annual Research Report
    • Int'l Joint Research
  • [Presentation] A Japanese perspective on the development of regulations governing emerging genome-relevant technologies2022

    • Author(s)
      Minari J, Takashima K, Shahrier S.
    • Organizer
      The 2022 ESOCITE/4S Joint Meeting
    • Related Report
      2022 Annual Research Report
    • Int'l Joint Research
  • [Presentation] Reflection of the fundamental principles of human genome research in Japan2021

    • Author(s)
      Minari J, Takashima K.
    • Organizer
      4S Annual Meeting 2021
    • Related Report
      2021 Research-status Report
    • Int'l Joint Research
  • [Presentation] 先端生命科学の進歩に伴う倫理的・法的・社会的課題をどう捉えるか2020

    • Author(s)
      三成寿作
    • Organizer
      第32回日本生命倫理学会年次大会
    • Related Report
      2020 Research-status Report
  • [Presentation] The transition of governmental ethical regulations on genome research in Japan2020

    • Author(s)
      Minari J
    • Organizer
      EASST/4S 2020 conference
    • Related Report
      2020 Research-status Report
    • Int'l Joint Research
  • [Presentation] 医学・医療分野におけるゲノム編集技術2020

    • Author(s)
      三成寿作
    • Organizer
      国立国会図書館「科学技術に関する調査プロジェクト:ゲノム編集の技術と影響」
    • Related Report
      2020 Research-status Report
    • Invited
  • [Presentation] How to regulate the use of gene editing technology on human embryos-the Japanese context2020

    • Author(s)
      Kokado M
    • Organizer
      EASST/4S 2020 conference
    • Related Report
      2020 Research-status Report
    • Int'l Joint Research
  • [Presentation] 情報活用・編集型商品のイノベーションと規制:デジタル時代の科学技術と経済(3)2020

    • Author(s)
      野中孝浩, 上田宏幸, 長谷川大地, 田口久美, 植木貴之, 金柄式, 木村めぐみ
    • Organizer
      研究・イノベーション学会第35回年次学術大会
    • Related Report
      2020 Research-status Report
  • [Presentation] 地域イノベーションの事例研究について2020

    • Author(s)
      木村めぐみ
    • Organizer
      第2回政策のための科学オープンフォーラム
    • Related Report
      2019 Research-status Report
    • Invited
  • [Presentation] ゲノム編集技術の社会応用をどう考えるか2019

    • Author(s)
      三成寿作
    • Organizer
      第31回日本生命倫理学会年次大会
    • Related Report
      2019 Research-status Report
  • [Presentation] 医学研究に係る倫理指針の見直しに関する検討状況について2019

    • Author(s)
      三成寿作
    • Organizer
      第2回がんに関する全ゲノム解析等の推進に関する部会(厚労省)
    • Related Report
      2019 Research-status Report
    • Invited
  • [Presentation] ゲノム情報の科学的・社会的含意に関する整理と検討2019

    • Author(s)
      三成寿作
    • Organizer
      第18回科学技術社会論学会年次研究大会
    • Related Report
      2019 Research-status Report
  • [Presentation] ゲノム研究・医療と指針改正について2019

    • Author(s)
      三成寿作
    • Organizer
      第2回ヒトゲノム研究倫理を考える会(文科省、先進ゲノム支援)
    • Related Report
      2019 Research-status Report
    • Invited
  • [Presentation] 社会におけるバイオバンクの役割とあり方2019

    • Author(s)
      三成寿作
    • Organizer
      JASISコンファレンス2019
    • Related Report
      2019 Research-status Report
    • Invited
  • [Presentation] 先端生命科学と生命倫理、社会2019

    • Author(s)
      三成寿作
    • Organizer
      第30回九州地区若手ケミカルエンジニア討論会
    • Related Report
      2019 Research-status Report
    • Invited
  • [Presentation] Tensions of genomic data sharing in genome research and pluripotent stem cell research2019

    • Author(s)
      Minari J
    • Organizer
      2019 ISSCR/KSSCR International Symposium
    • Related Report
      2019 Research-status Report
    • Int'l Joint Research
  • [Presentation] 生殖する身体の性別はいかに判断されるのか─フランスの動向から2019

    • Author(s)
      小門穂
    • Organizer
      第31回日本生命倫理学会年次大会
    • Related Report
      2019 Research-status Report
  • [Presentation] フランス生命倫理法改正─生殖医療・受精卵を中心に2019

    • Author(s)
      小門穂
    • Organizer
      第49回日本医事法学会
    • Related Report
      2019 Research-status Report
  • [Presentation] 生殖ツーリズムと国内法規制─フランス生命倫理法2019年改正から2019

    • Author(s)
      小門穂
    • Organizer
      第64回日本生殖医学会
    • Related Report
      2019 Research-status Report
    • Invited
  • [Presentation] Gametes Move Across Borders : Forefront of Reproductive Tourism2019

    • Author(s)
      Kokado M
    • Organizer
      4S Annual Meeting 2019
    • Related Report
      2019 Research-status Report
    • Int'l Joint Research
  • [Book] 生殖補助医療の公的管理と子の出自を知る権利:フランスの動向, 『LGBTQの家族形成支援~生殖補助医療・養子&里親による(第2版)』(二宮周平編著)2023

    • Author(s)
      小門穂
    • Total Pages
      11
    • Publisher
      信山社
    • Related Report
      2022 Annual Research Report

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Published: 2019-07-04   Modified: 2024-01-30  

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