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Comparative Study on Ethical and Legal Problems regarding Medical Genetics and Genetic Counseling

Research Project

Project/Area Number 12620004
Research Category

Grant-in-Aid for Scientific Research (C)

Allocation TypeSingle-year Grants
Section一般
Research Field Fundamental law
Research InstitutionKOBE UNIVERSITY

Principal Investigator

MARUYAMA Eiji  Kobe University Graduate School of Law Professor, 大学院・法学研究科, 教授 (10030636)

Project Period (FY) 2000 – 2002
Project Status Completed (Fiscal Year 2002)
Budget Amount *help
¥3,500,000 (Direct Cost: ¥3,500,000)
Fiscal Year 2002: ¥900,000 (Direct Cost: ¥900,000)
Fiscal Year 2001: ¥1,100,000 (Direct Cost: ¥1,100,000)
Fiscal Year 2000: ¥1,500,000 (Direct Cost: ¥1,500,000)
Keywordsgenomic analysis research / genetic information / genetic test / wrongful birth action / informed consent / 匿名化 / 組織細胞バンク / 遺伝子 / 倫理審査委員会 / 生命倫理 / ヒトゲノム / 既存試料
Research Abstract

In this research, I studied ethical and legal problems of (1) genetic diagnosis and testing, (2) genomic analysis research, (3) genetic counseling, based upon the investigation of developments in the United States and Japan.
(1) I studied the requirements of informed consent and confidentiality, and adequacy of disclosure of genetic risk to patient's relatives, taking into consideration the characteristics of genetic information such as individuality, predictability, unchangeability, and it being shared among relatives. Additionally, recent legislative measures in the United States against insurance discrimination based upon genetic information was studied.
(2) As I participated in the study groups drafting governmental guidelines for the genomic research, my study was focused upon the requirements of these governmental guidelines. In the process, I found that the degree of anonymity that can be gained through deletion of the personal identifier from research materials depends not only the specificity of the identifier but also the volume and accuracy of the personal information stored by the person dealing with the materials and his information processing capabilities. As the research that studies the relation between the genomic data of individuals and their conditions will be extensively conducted, personal information gathered for research will be increasingly detailed. New schemes for protection of personal medical data in the setting of research must be developed.
(3) With respect to the wrongful birth/life action in the United States, the attitude of American courts has not changed in the past 10 years. Courts of the majority of the states entertain the wrongful birth cause of action, whereas only three states allow wrongful life actions.

Report

(4 results)
  • 2002 Annual Research Report   Final Research Report Summary
  • 2001 Annual Research Report
  • 2000 Annual Research Report
  • Research Products

    (16 results)

All Other

All Publications (16 results)

  • [Publications] 丸山 英二: "ヒトゲノム・遺伝子解析研究に関する最近の政府指針"ジュリスト. 1193号. 49-56 (2001)

    • Description
      「研究成果報告書概要(和文)」より
    • Related Report
      2002 Final Research Report Summary
  • [Publications] 丸山 英二: "先端医療技術に関する最近の政府指針におけるインフォームド・コンセント"年報医事法学. 16号. 64-74 (2001)

    • Description
      「研究成果報告書概要(和文)」より
    • Related Report
      2002 Final Research Report Summary
  • [Publications] 丸山 英二: "医学・医療における個人情報保護とインフォームド・コンセント"JACR MONOGRAPH. No.7. 5-9 (2002)

    • Description
      「研究成果報告書概要(和文)」より
    • Related Report
      2002 Final Research Report Summary
  • [Publications] 丸山 英二: "生命倫理関係の政府指針をめぐって"Scientia. 27号. 18-20 (2003)

    • Description
      「研究成果報告書概要(和文)」より
    • Related Report
      2002 Final Research Report Summary
  • [Publications] 丸山 英二: "わが国の医学・生命科学研究に関する政府指針"ジュリスト. 1247号. 37-48 (2003)

    • Description
      「研究成果報告書概要(和文)」より
    • Related Report
      2002 Final Research Report Summary
  • [Publications] Eiji Maruyama: "Recent Sets of Governmental Guidelines concerning Human Genomic Research"Jurist. No. 1193. 49-56 (2001)

    • Description
      「研究成果報告書概要(欧文)」より
    • Related Report
      2002 Final Research Report Summary
  • [Publications] Eiji Maruyama: "The Requirement of Informed Consent in Recent Governmental Guidelines concerning Advanced Medical Technologies"Journal of Medical Law. No. 16. 64-74 (2001)

    • Description
      「研究成果報告書概要(欧文)」より
    • Related Report
      2002 Final Research Report Summary
  • [Publications] Eiji Maruyama: "Protection of Personal Information and Requirement of Informed Consent in Medicine"JACR Monograph. No. 7. 5-9 (2002)

    • Description
      「研究成果報告書概要(欧文)」より
    • Related Report
      2002 Final Research Report Summary
  • [Publications] Eiji Maruyama: "On Governmental Bioethics Guidelines"Scientia. No. 27. 18-20 (2003)

    • Description
      「研究成果報告書概要(欧文)」より
    • Related Report
      2002 Final Research Report Summary
  • [Publications] Eiji Maruyama: "Governmental Guidelines regarding Medical and Life Science Researches in Japan"Jurist. No. 1247. 37-48 (2003)

    • Description
      「研究成果報告書概要(欧文)」より
    • Related Report
      2002 Final Research Report Summary
  • [Publications] 丸山 英二: "医学研究・先端医療に関する政府指針"患者のための医療. 1巻2号. 354-355 (2002)

    • Related Report
      2002 Annual Research Report
  • [Publications] 丸山 英二: "生命倫理関係の政府指針をめぐって"Scientia. (未定). (2003)

    • Related Report
      2002 Annual Research Report
  • [Publications] 丸山 英二: "先端医療技術に関する最近の政府指針におけるインフォームド・コンセント"年報医事法学. 16号. 64-74 (2001)

    • Related Report
      2001 Annual Research Report
  • [Publications] 丸山英二: "クローン,ES細胞,遺伝子研究に関する生命倫理"法律時報. 72巻7号. 1-3 (2000)

    • Related Report
      2000 Annual Research Report
  • [Publications] 丸山英二: "ヒトゲノム・遺伝子解析研究に関する最近の政府指針"ジュリスト. 1193号. 49-56 (2001)

    • Related Report
      2000 Annual Research Report
  • [Publications] 丸山英二: "先端医療技術に関する最近の政府指針におけるインフォームド・コンセント"年報医事法学. 16号(未刊). (2001)

    • Related Report
      2000 Annual Research Report

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Published: 2000-04-01   Modified: 2016-04-21  

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