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Ethical issues of returning participants' individual genomic data in medical research

Research Project

Project/Area Number 26882012
Research Category

Grant-in-Aid for Research Activity Start-up

Allocation TypeSingle-year Grants
Research Field Sociology/History of science and technology
Research InstitutionThe University of Tokyo

Principal Investigator

Takashima Kyoko  東京大学, 医科学研究所, 特任研究員 (10735749)

Project Period (FY) 2014-08-29 – 2016-03-31
Project Status Completed (Fiscal Year 2015)
Budget Amount *help
¥2,730,000 (Direct Cost: ¥2,100,000、Indirect Cost: ¥630,000)
Fiscal Year 2015: ¥1,300,000 (Direct Cost: ¥1,000,000、Indirect Cost: ¥300,000)
Fiscal Year 2014: ¥1,430,000 (Direct Cost: ¥1,100,000、Indirect Cost: ¥330,000)
Keywords研究倫理 / ELSI / 研究結果の開示 / ゲノム情報の開示 / ゲノム研究 / Whole genome sequencing / 家族 / 研究結果の提供 / 遺伝情報の開示 / 研究参加者
Outline of Final Research Achievements

The goal of this study project was to suggest an appropriate model for offering individual genomic results or incidental/secondary findings to research participants in genomic research including whole genome sequencing (WGS). To achieve this goal, literature research and case analysis of national and international genomic research or biobanks were conducted. As a result, currently researchers do not have an active duty to offer individual genomic results unless informed consent documents indicated it would be offered, because it is difficult to confirm analytical validity, evaluate clinical utility, and make genetic counseling and adequate follow-up care available in the research context. However, researchers should be responsible for continuing to discuss the best way for not only research participants but also their families as genome sequencing technology is advanced more.

Report

(3 results)
  • 2015 Annual Research Report   Final Research Report ( PDF )
  • 2014 Annual Research Report
  • Research Products

    (9 results)

All 2016 2015 2014

All Journal Article (3 results) (of which Peer Reviewed: 1 results,  Open Access: 1 results) Presentation (5 results) (of which Int'l Joint Research: 3 results) Book (1 results)

  • [Journal Article] 遺伝医療における倫理的問題―二次的所見を巡る議論の動向―2016

    • Author(s)
      高島響子
    • Journal Title

      ホルモンと臨床

      Volume: 印刷中

    • Related Report
      2015 Annual Research Report
  • [Journal Article] "Handling incidental findings in neuroimaging research in Japan: current state of research facilities and attitudes of investigators and the general population"2014

    • Author(s)
      Misao Fujita, Yoshinori Hayashi, Shimon Tashiro, Kyoko Takashima, Eisuke Nakazawa and Akira Akabayashi
    • Journal Title

      Health Research Policy and Systems

      Volume: 12 Issue: 1 Pages: 58-58

    • DOI

      10.1186/1478-4505-12-58

    • NAID

      120005512248

    • Related Report
      2014 Annual Research Report
    • Peer Reviewed / Open Access
  • [Journal Article] 臨床研究における偶発的所見に関する倫理的課題2014

    • Author(s)
      高島 響子
    • Journal Title

      医薬ジャーナル

      Volume: 50 Pages: 101-105

    • Related Report
      2014 Annual Research Report
  • [Presentation] Reconsideration of “research participants” concerning a familial disease registry for prospective genomic research2016

    • Author(s)
      Kyoko TAKASHIMA, Yuichi MARU, Kaori MUTO
    • Organizer
      13th World Congress of Bioethics
    • Place of Presentation
      Edinburgh (Scotland)
    • Year and Date
      2016-06-14
    • Related Report
      2015 Annual Research Report
    • Int'l Joint Research
  • [Presentation] Ethical considerations in sharing genomic data of patients’ relatives in cancer research2016

    • Author(s)
      Kyoko TAKASHIMA, Seiichi MORI, Hiroyuki MANO, Tetsuo NODA, Kaori MUTO
    • Organizer
      European Conference of Human Genetics 2016
    • Place of Presentation
      Barcelona (Spain)
    • Year and Date
      2016-05-21
    • Related Report
      2015 Annual Research Report
    • Int'l Joint Research
  • [Presentation] 家族性疾患登録および研究における家系員への倫理的配慮2015

    • Author(s)
      高島響子、武藤香織
    • Organizer
      日本人類遺伝学会第60回大会
    • Place of Presentation
      新宿プラザホテル(東京都新宿区)
    • Year and Date
      2015-10-14
    • Related Report
      2015 Annual Research Report
  • [Presentation] Ethical challenges in recruiting participants for “familial” disease registry2015

    • Author(s)
      Kyoko TAKASHIMA, Kaori MUTO
    • Organizer
      42nd IMSUT Founding Commemorative Symposium
    • Place of Presentation
      東京大学医科学研究所(東京都港区)
    • Year and Date
      2015-06-01
    • Related Report
      2015 Annual Research Report
  • [Presentation] Public attitude towards DTC (direct-to-consumer) personal genomics services in Japan2015

    • Author(s)
      Akiko NAGAI, Kaori MUTO, Kyoko TAKASHIMA
    • Organizer
      11th International Genome Meeting
    • Place of Presentation
      学術総合センター(東京都千代田区)
    • Year and Date
      2015-05-20
    • Related Report
      2015 Annual Research Report
    • Int'l Joint Research
  • [Book] 医学・生命科学研究の研究倫理ハンドブック2015

    • Author(s)
      神里彩子、武藤香織(編)、高島響子(執筆)
    • Total Pages
      180
    • Publisher
      東京大学出版会
    • Related Report
      2015 Annual Research Report

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Published: 2014-09-09   Modified: 2017-05-10  

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