2002 Fiscal Year Final Research Report Summary
Comparative Study on Ethical and Legal Problems regarding Medical Genetics and Genetic Counseling
| Project/Area Number |
12620004
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| Research Category |
Grant-in-Aid for Scientific Research (C)
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| Allocation Type | Single-year Grants |
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| Section | 一般 |
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| Research Field |
Fundamental law
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| Research Institution | KOBE UNIVERSITY |
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Principal Investigator |
MARUYAMA Eiji Kobe University Graduate School of Law Professor, 大学院・法学研究科, 教授 (10030636)
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| Project Period (FY) |
2000 – 2002
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| Keywords | genomic analysis research / genetic information / genetic test / wrongful birth action / informed consent |
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| 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.
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