pp. 434 in Bioethics in Asia

Editors: Norio Fujiki and Darryl R. J. Macer, Ph.D.
Eubios Ethics Institute

Copyright 2000, Eubios Ethics Institute All commercial rights reserved. This publication may be reproduced for limited educational or academic use, however please enquire with the author.

F27. Ethical, Legal and Social Issues in Pre-symptomatic Testing for Cancer

Yukiko Tsunematsu.

National Children's Hospital, Tokyo

Recent advances in molecular biology have led to the identification of several inherited cancer susceptibility genes including common adulthood cancer. Much has been learned from the experience of careful study of Huntington Diseases and other non-malignant conditions. There are some differences in the case of predisposition testing for cancer. There is often the perception that cancer is preventable, and sometimes curable, in the contrast to other hereditary conditions; thus this pre-symptomatic testing is expected to reduce cancer morbidity and mortality by preventive intervention, early detection and adequate management. But these new predictive tests raise ELSI issues, 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. Any physician who offers genetic testing should be aware of, and able to communicate, the benefits and limits of current testing procedures and the range of prevention and treatment options to patients and their families.

Historically, Japanese doctors have not fully communicated the true diagnosis to patients with cancer. It has been thought to be very difficult for Japanese patients to be told a serious condition concerning both hereditary and neoplastic disease. The Ethics committee in Japanese Society of Familial Tumors is now elaborating the guidelines for research on genetic testing for familial tumors in order to support the individuals or families who are the subjects of the research on the clinical applications and to protect all their rights. The perception of the families' follow-up raises the large issues like the need for a health care system which includes general family counseling. Genetic testing for cancer susceptibility should generally be performed only within the context of long-term outcome of the studies which are designed to measure the medical and psychological effectiveness. While individual autonomy must not be sacrificed, in many instances multigenerational counseling will be appropriate. It is the ethical duty for the individuals who are informed to be at genetic risk of familial cancer to disclose to their relatives that they may also be at genetic risk prior to the testing (draft proposed WHO Guidelines).

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