pp. 426-427 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.

F23. Shinshu University Hospital Established the Division of Clinical Genetics as One of its Central Service Departments

Yoshimitsu Fukushima.

Shinshu University School of Medicine, Japan

Recent advances in molecular genetics enable us to perform carrier detection, presymptomatic diagnosis or prenatal diagnosis of many genetic disorders. These techniques are useful for reducing the anxiety of patients or families, and for early diagnosis and treatment. However some people have misgivings about endangering confidentiality, genetic discrimination and enforced genetic testing. To use these techniques effectively, a division of clinical genetics, at which genetic diagnosis and counseling are provided, is necessary. However, the field of clinical genetics has lagged in Japan, and hardly any university hospitals have a division specializing in this field. Shinshu University Hospital has taken a lead in this field and established a division of clinical genetics as one of its central service departments. Several MDs from the departments of internal medicine, geriatrics, pediatrics, surgery, laboratory medicine and hygiene staff this project. In principle the staff of this department are doctors certified as clinical geneticists by the Japan Society of Human Genetics and have been gathered from the departments of internal medicine, geriatrics, pediatrics, surgery, laboratory medicine and hygiene. Those seeking genetic counseling or genetic testing generally visit the clinic twice. On the first visit staff collect detailed information including family history, and confirm diagnoses and test results in order to carry out accurate counseling. A staff meeting of the department of clinical genetics is held once a week to discuss for each case how to provide adequate counseling at the next visit. Based on the results, the staff gives genetic counseling to the counselee at the second consultation. As there are specialists from many fields in our group, we can cope with any kind of genetic disorder. During the one-and-a-half years since its establishment over 115 counselees with problems such as congenital defects, familial cancer, genetic nerve disorders, etc. have visited the clinic and received counseling, and appropriate genetic diagnosis.

This is the first clinical genetics department in a National University Hospital in Japan, but it is to be hoped that this system of having a clinical genetics division will become widely available in other university hospitals in Japan where there are a number of clinical geneticists and cooperative physicians and technicians.

In cooperation with a doctor colleague in the genetics section of a pediatric hospital I have translated "draft WHO Guidelines on ethical issues in medical genetics and the provision of genetic services" into Japanese, preparing a booklet in September 1997. This we have distributed on request, mainly to members of the Japanese Society of Human Genetics. We have handed this booklet out not only to doctors and researchers, but also to members of the mass-media, patient support-groups, and the general public.

We asked for the impressions of those who had read the proposed guidelines, and obtained a generally favorable response from doctors and researchers. This was that the written content was appropriate and that it would contribute to the healthy future development of genetic medicine.

However, a number of concerns were voiced by some members of patient support-groups and the general public. I will introduce some of these here.

* There is unease that given the present state of medical treatment in Japan, with its insufficient genetic services, that a choice purported to be free may be under considerable coercion.

* Although not involving eugenic ideology, the aim being the eradication of genetic disease may strengthen discriminations against the handicapped.

* With Japan still a village society, and individual's rights of self-determination still imperfect might it not be dangerous for new techniques such as genetic diagnosis to spread? Moreover in Japan, where a climate in which genetic disease is seen as a family shame and defiling the image has not yet been completely dispelled, wouldn't the demerits of being diagnosed with a genetic disease outweigh the merits?

* There is a problem in the attitude which rushes to draw-up ethical guidelines once a new technology has been developed just because people want to use it in their research.

These misgiving are not directed at the proposed guidelines themselves, but can rather be thought of as based on distrust of the whole medical system in Japan, and an insufficient genetic counseling, education in genetic medicine and genetic treatment.

Therefore our above work at Shinshu University is an experiment to spread education in genetic medicine and genetic treatment in Japan. In recent years in order to apply the rapidly advancing techniques of gene analysis in the place of treatment, a clinical genetics department carrying out genetic diagnosis and genetic counseling has become necessary. But in Japan the field of clinical genetics lays behind and hardly any university hospitals have a consultantcy specializing in clinical genetics. In May 1996 Shinshu University Hospital took a nationwide lead by establishing a department of clinical genetics as one of its central service departments.

We can expect that when genetic treatment, including genetic counseling and training in genetic medicine, come up to scratch, then the draft proposed WHO guidelines will also become acceptable to the general public and patient support-groups, and take on a real significance.


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