Patient/family-healthcare professional relationship and ethical issues in personalized genomic medicine

2023 Fiscal Year Final Research Report

• Project/Area Number: 20K12909
• Research Category: Grant-in-Aid for Early-Career Scientists
• Allocation Type: Multi-year Fund
• Review Section: Basic Section 01080:Sociology of science, history of science and technology-related
• Research Institution: National Center for Global Health and Medicine
• Principal Investigator: Takashima Kyoko 国立研究開発法人国立国際医療研究センター, 臨床研究センター, 臨床研究統括部 生命倫理研究室長 (10735749)
• Project Period (FY): 2020-04-01 – 2024-03-31
• Keywords: ELSI / ゲノム医療 / 患者遺伝情報 / 患者・家族-医療者関係 / 守秘義務 / 医療情報

Outline of Final Research Achievements

This study aimed to elucidate the physician-patient/family relationship and ethical issues in the era of personalized genomic medicine through normative and empirical research. Normative research encompassed: 1) reconsideration of genetic exceptionalism in the era of genomic medicine and the management of genetic information in electronic health records, 2) the duty of medical professionals to recontact patients/relatives regarding revised genomic test results, 3) ethical considerations in cancer research and medicine, and 4) dilemmas related to sharing patient genetic information with their relatives. In the empirical study, we analyzed genetic counseling cases at our hospital, focusing on issue 4).

Free Research Field

生命・医療倫理学

Academic Significance and Societal Importance of the Research Achievements

本研究実施期間中にも、乳がんまたは卵巣・卵管がん既往の遺伝性乳がん卵巣がん症候群患者に対するリスク低減手術が保険収載されるゲノム医療の臨床応用が少しずつ進み、またんできている。本研究を通じて明らかにされた論点は海外では一定の議論の蓄積が見られるもののまだ国内でのコンセンサスが得られていない。本研究の成果が今後ゲノム医療を進める中での必要な議論、方針を検討する上で一定の寄与をすると考える。