title: [Ethical legal and social issues in pre-symptomatic testing for cancer susceptibility in familial tumors].
abstract: Recent advance in molecular biology have led to the identification several inherited cancer susceptibility genes. The pre-symptomatic testing is expected to reduce cancer morbidity and mortality by preventive intervention, early detection and adequate management. But this new predictive tests may raise ethical legal social issues (ELSI) in association with the right to control private information and confidentiality. The implications of test results are enormous, not only for the individuals but also for relatives who share this genetic legacy and society as a whole. Genetic testing for cancer susceptibility should generally be performed only within the context of long-term outcome studies which are designed to measure the medical and psychological effectiveness. The Ethical Subcommittee in Japanese Society of Familial Tumors is now elaborating the guidelines for the research on genetic testing for familial tumors in order to support the individual or family who are the subjects of the research of the clinical applications and to protect their human rights. Current standards for contents and process of informed consent and core elements in obtaining consent for DNA sample storage in medical research were listed up.
authors.affiliation: Division of Hematology/Oncology, National Children's Hospital, Tokyo, Japan.
authors.forename: Y
authors.initials: Y
authors.lastname: Tsunematsu
mesh_terms: D003219:Confidentiality; D016208:Databases, Factual; D004198:Disease Susceptibility; D004992:Ethics, Medical; D005817:Genetic Counseling; D006801:Humans; D007258:Informed Consent; D007883:Legislation, Medical; D009369:Neoplasms / Q000175:diagnosis / Q000235:genetics*; D012306:Risk