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2020 Fiscal Year Final Research Report

Establishing a governance system for residual biospecimens and health information based on trust through value sharing with the public

Research Project

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Project/Area Number 17K08916
Research Category

Grant-in-Aid for Scientific Research (C)

Allocation TypeMulti-year Fund
Section一般
Research Field Medical sociology
Research InstitutionKyoto University

Principal Investigator

Sato] Keiko  京都大学, 医学研究科, 特定研究員 (10398456)

Co-Investigator(Kenkyū-buntansha) 伊藤 達也  京都大学, 医学研究科, 講師 (00452342)
松村 由美  京都大学, 医学研究科, 教授 (10362493)
鈴木 美香  京都大学, iPS細胞研究所, 特定研究員 (60555259)
児玉 聡  京都大学, 文学研究科, 准教授 (80372366)
Project Period (FY) 2017-04-01 – 2021-03-31
Keywords人体由来資料 / 医療情報 / 研究利用 / 胚盤胞 / ES細胞 / ガバナンス
Outline of Final Research Achievements

The purpose of this study is to propose a governance system for the use of residual biospecimens and health information obtained for treatment purposes. To this end, we examined measures for the governance of biospecimens and information in medical institutions by surveying the opinions of patients and citizens and comparing the strategies in other countries.
Most of the patients and citizens were generally supportive of using biospecimens and information for research, but they also mentioned that researchers must conduct meaningful research, create and follow rules. Therefore, anonymization alone is not enough; it is essential to inform patients and citizens about how the samples and information are used and to obtain their consent (societal consent). It was shown that citizens do not unconditionally trust researchers, that trust can be gained when researchers build autonomous governance systems.

Free Research Field

生命倫理学

Academic Significance and Societal Importance of the Research Achievements

研究機関等が検体・情報を研究利用する際の条件として、患者・市民は、研究実施の公表や、逸脱者への制裁も含むルールを作って遵守すること、これらを明示すること等を挙げた。匿名加工や拒否の機会の設置等では十分でなく、研究の適正な実施や自律的なガバナンス方法を社会に説明して了解を得ること(societal consent)が重要であり、施設では、基本方針、ガイドライン・行動基準、説明ツール等の整備が必要である。市民は、研究者を無条件で信頼するわけではなく、研究者が責任を明確にしてそれを果たすことを説明し、患者・市民の了解を得るための持続的な営為が必要であることが明らかとなるなど、有益な知見が得られた。

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Published: 2022-01-27  

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