| Project/Area Number |
16K16333
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| Research Category |
Grant-in-Aid for Young Scientists (B)
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| Allocation Type | Multi-year Fund |
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| Research Field |
Sociology/History of science and technology
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| Research Institution | National Center for Global Health and Medicine (2018-2019)
The University of Tokyo (2016-2017) |
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Principal Investigator |
Takashima Kyoko 国立研究開発法人国立国際医療研究センター, その他部局等, 上級研究員 (10735749)
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| Project Period (FY) |
2016-04-01 – 2020-03-31
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| Project Status |
Completed (Fiscal Year 2019)
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| Budget Amount *help |
¥3,900,000 (Direct Cost: ¥3,000,000、Indirect Cost: ¥900,000)
Fiscal Year 2019: ¥780,000 (Direct Cost: ¥600,000、Indirect Cost: ¥180,000)
Fiscal Year 2018: ¥780,000 (Direct Cost: ¥600,000、Indirect Cost: ¥180,000)
Fiscal Year 2017: ¥1,560,000 (Direct Cost: ¥1,200,000、Indirect Cost: ¥360,000)
Fiscal Year 2016: ¥780,000 (Direct Cost: ¥600,000、Indirect Cost: ¥180,000)
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| Keywords | ELSI / 家族性疾患 / 遺伝情報の患者家族への開示 / 守秘義務 / ゲノム医療と倫理 / データ共有 / 遺伝情報の患者家系員への開示 / ヒトゲノム / 研究倫理 / ゲノム研究 |
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| Outline of Final Research Achievements |
This study aimed to clarify ethical concerns for familial/hereditary disease research in the era of next-generation sequencing. Through literature study and empirical study, three main outcomes were achieved: 1) ethical considerations in familial genomic data sharing that researchers and other stakeholders conducting familial disease study should manage are identified, and an article of recommendations for them was published; 2) surveys which subjected to the public were conducted to clarify their knowledge and comprehension about genome or genetic information, views against ethical concerns in genomic research, and preferences for genomic medicine; 3) a dilemma between sharing of patients’ genetic information with their family members and confidentiality, and its ethical and legal issues were examined with reviewing international latest discussion and national regulations and guidelines, and published.
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| Academic Significance and Societal Importance of the Research Achievements |
国内においてNGSを用いた家族性疾患研究や大規模多施設共同研究はすでに実施されており、さらに本研究の実施期間中、コンパニオン診断薬やがん遺伝子パネル検査が保険収載されるなど国内のゲノム医療が大きく進展、国民にとって現実的な治療選択肢となり、患者同様、家系員への配慮の重要性が一層増している。そうした状況において、本研究が提示した倫理的配慮事項は、現に実施される国内外の家族性疾患ゲノム研究において、必要かつ直ちに実践に生かせるものである。また、研究倫理及びELSI研究（医学研究の倫理的・法的・社会的問題に取り組む研究分野）の領域においても新たな意義を提起すると考える。
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