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Research on ethical, legal, and social issues associated with the implementing cancer genomic medicine

Research Project

Project/Area Number 18K09940
Research Category

Grant-in-Aid for Scientific Research (C)

Allocation TypeMulti-year Fund
Section一般
Review Section Basic Section 58010:Medical management and medical sociology-related
Research InstitutionThe University of Tokyo

Principal Investigator

Nagai Akiko  東京大学, 医科学研究所, 特任助教 (00568678)

Project Period (FY) 2018-04-01 – 2023-03-31
Project Status Completed (Fiscal Year 2022)
Budget Amount *help
¥4,420,000 (Direct Cost: ¥3,400,000、Indirect Cost: ¥1,020,000)
Fiscal Year 2020: ¥650,000 (Direct Cost: ¥500,000、Indirect Cost: ¥150,000)
Fiscal Year 2019: ¥1,560,000 (Direct Cost: ¥1,200,000、Indirect Cost: ¥360,000)
Fiscal Year 2018: ¥2,210,000 (Direct Cost: ¥1,700,000、Indirect Cost: ¥510,000)
Keywordsゲノム医療 / がん遺伝子パネル検査 / 倫理的・法的・社会的課題(ELSI) / 情報提供 / がんゲノム医療 / リテラシー / ELSI / フォーカスグループインタビュー調査 / ELSI
Outline of Final Research Achievements

Cancer genome profiling tests have been launched to be medical treatment covered by the national health insurance since June 2019, and cancer genome medicine is becoming more familiar in Japan. This study clarified the expectations and concerns about cancer genomic medicine, the preferences for sharing information on hereditary cancer risk that may be found by cancer gene panel testing with family members, and the current status of information sources for cancer genome medicine and the information needs regarding cancer genome medicine through anonymous online surveys and focus group interview surveys. Based on the survey results and the current situation surrounding cancer genome medicine in Japan, the study examined how information on cancer genome medicine should be provided in the future and the necessary social infrastructure.

Academic Significance and Societal Importance of the Research Achievements

がん遺伝子パネル検査が2019年6月から保険適用され、今後、がんゲノム医療は急速に普及が進むと予想されることから、がんゲノム医療に関する倫理的・法的・社会的課題の検討は急務である。しかし、日本で保険診療として提供されるがんゲノム医療について、患者や市民がどのような期待や懸念を持っているかは明らかではなかった。本研究は、がん患者や市民を対象とした量的な意識調査とがん患者を対象とした質的調査の実施により、がんゲノム医療に関する期待や懸念、がんゲノム医療の情報源の現状や情報提供に関するニーズ等を明らかにした。これらはがんゲノム医療を適切に推進していくための基礎資料となるだろう。

Report

(6 results)
  • 2022 Annual Research Report   Final Research Report ( PDF )
  • 2021 Research-status Report
  • 2020 Research-status Report
  • 2019 Research-status Report
  • 2018 Research-status Report
  • Research Products

    (15 results)

All 2022 2021 2020 2019 2018 Other

All Journal Article (3 results) (of which Peer Reviewed: 2 results,  Open Access: 2 results) Presentation (11 results) (of which Int'l Joint Research: 4 results) Remarks (1 results)

  • [Journal Article] Expectations, concerns, and attitudes regarding whole-genome sequencing studies: a survey of cancer patients, families, and the public in Japan2022

    • Author(s)
      Izen Ri, Junichi Kawata, Akiko Nagai, Kaori Muto
    • Journal Title

      Journal of Human Genetics

      Volume: 68 Issue: 4 Pages: 281-285

    • DOI

      10.1038/s10038-022-01100-6

    • Related Report
      2022 Annual Research Report
    • Peer Reviewed / Open Access
  • [Journal Article] 生命保険における遺伝情報の取扱いをめぐる倫理的法的社会的課題(ELSI)2022

    • Author(s)
      武藤香織, 李怡然, 飯田寛, 河田純一, 永井亜貴子
    • Journal Title

      腫瘍内科

      Volume: 29 Pages: 78-84

    • NAID

      40022805278

    • Related Report
      2021 Research-status Report
  • [Journal Article] Attitudes toward genomic tumor profiling tests in Japan: patients, family members, and the public2019

    • Author(s)
      Nagai Akiko、Ri Izen、Muto Kaori
    • Journal Title

      Journal of Human Genetics

      Volume: 64 Issue: 5 Pages: 481-485

    • DOI

      10.1038/s10038-018-0555-3

    • Related Report
      2018 Research-status Report
    • Peer Reviewed / Open Access
  • [Presentation] がんゲノム医療に関するがん患者の態度と普及に向けた情報提供のあり方の検討2022

    • Author(s)
      永井 亜貴子,中田 はる佳,高島 響子,吉田 幸恵
    • Organizer
      日本人類遺伝学会第67回大会
    • Related Report
      2022 Annual Research Report
  • [Presentation] Awareness, expectations, and concerns regarding whole-genome sequencing studies: a survey of cancer patients, families and the public in Japan2022

    • Author(s)
      Izen Ri, Junichi Kawata, Akiko Nagai, Kaori Muto
    • Organizer
      European Human Genetics Conference
    • Related Report
      2022 Annual Research Report
    • Int'l Joint Research
  • [Presentation] 全ゲノム解析に対するがん患者・一般市民の意識調査(1)―認知度および研究への期待と懸念2021

    • Author(s)
      河田純一, 永井亜貴子, 李怡然, 武藤香織
    • Organizer
      日本人類遺伝学会第66回大会・第28回日本遺伝子診療学会大会
    • Related Report
      2021 Research-status Report
  • [Presentation] ゲノム解析に対するがん患者・一般市民の意識調査(2)―結果返却への期待2021

    • Author(s)
      李怡然, 永井亜貴子, 河田純一, 武藤香織
    • Organizer
      日本人類遺伝学会第66回大会・第28回日本遺伝子診療学会大会
    • Related Report
      2021 Research-status Report
  • [Presentation] がん遺伝子パネル検査に対するがん患者・患者家族・市民の態度と情報源2020

    • Author(s)
      永井 亜貴子.李 怡然.武藤 香織
    • Organizer
      2020年日本人類遺伝学会第65回大会
    • Related Report
      2020 Research-status Report
  • [Presentation] What public concerns exist regarding genetic information: Japanese experiences and beyond2020

    • Author(s)
      Kaori Muto, Akiko Nagai, Izen Ri, Zentaro Yamagata.
    • Organizer
      European Society of Human Genetics 2020.2-Live in your living room-Virtual Conference.
    • Related Report
      2020 Research-status Report
    • Int'l Joint Research
  • [Presentation] What Public Concerns Exist Regarding Cancer Genomic Medicine? ―Japanese Experience and Beyond―2020

    • Author(s)
      Kaori Muto, Akiko Nagai
    • Organizer
      The International Conference on Cancer Systems Biology Beyond
    • Related Report
      2019 Research-status Report
    • Int'l Joint Research
  • [Presentation] Genetic knowledge and attitudes toward genomic tumor profiling tests in Japan2019

    • Author(s)
      Akiko Nagai, Kaori Muto
    • Organizer
      The 13th International Workshop on Advanced Genomics
    • Related Report
      2019 Research-status Report
    • Int'l Joint Research
  • [Presentation] 子どもの全ゲノム解析への期待と懸念に関する一般市民の意識調査2019

    • Author(s)
      李怡然, 永井亜貴子, 武藤香織
    • Organizer
      日本人類遺伝学会第64回大会
    • Related Report
      2019 Research-status Report
  • [Presentation] がん遺伝子パネル検査に関する患者・家族の態度 (1)~がん遺伝子パネル検査の認知度と検査に関する期待および懸念~2018

    • Author(s)
      永井亜貴子、李怡然、武藤香織
    • Organizer
      日本人類遺伝学会第63回大会
    • Related Report
      2018 Research-status Report
  • [Presentation] がん遺伝子パネル検査に関する患者・家族の態度 (2) ―遺伝性腫瘍に関する結果の家族内共有2018

    • Author(s)
      李怡然、永井亜貴子、武藤香織
    • Organizer
      日本人類遺伝学会第63回大会
    • Related Report
      2018 Research-status Report
  • [Remarks] がん遺伝子パネル検査に寄せる期待と懸念とは?

    • URL

      https://www.ims.u-tokyo.ac.jp/imsut/jp/research/papers/post_116.html

    • Related Report
      2019 Research-status Report

URL: 

Published: 2018-04-23   Modified: 2024-01-30  

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