pp. 145-146 in Human Genome Research and Society
Proceedings of the Second International Bioethics Seminar in Fukui, 20-21 March, 1992.

Editors: Norio Fujiki, M.D. & Darryl R.J. Macer, Ph.D.

Copyright 1992, Eubios Ethics Institute All commercial rights reserved. The copyrights for the employees of the US Government, are subject to other copyright arrangements. This publication may be reproduced for limited educational or academic use, however please enquire with Eubios Ethics Institute.

Different client's response at genetic clinics in Japan and the USA, and its ethical background

Hiroko Kawashima,
Director, Wajima Health Center, Ishikawa, JAPAN

I am involved in clinical study so I do not have any results of experiments, but I will base this presentation on experience as a pediatrician at genetic clinics in the USA, at the University of California, San Francisco, and in Kanazawa, Japan. I have relationships with the clients and client's families in various ways. These observations are based on my personal judgement. Where I was working in Japan, at Kanazawa, Ishikawa Prefecture is a very conservative place. When I talk about Japan in general it may be somewhat different from Japanese living in the cities, therefore there may be some bias in my thinking. Since people's behaviour is based on their ethics, different attitudes towards genetic issues tells us some of the differences in their ethics.

The following comparisons of family reaction are based on the assumption that a boy with a hereditary disease is born, and the physician recommends that the family visit the genetic clinic for consultation. The comparisons are summarised in Table 1. In Japan the mother usually comes with the patient, sometimes with maternal grand mother. The mother may come secretly, whereas in the USA both parents may come. The main concern of the family in Japan is the family name, appearance. But in the USA the happiness of the patient or individual is most important. In Japan, the reaction to the hereditary disease is shame of the family and they want to hide it, but in the USA it is just considered unlucky. In Japan the mother must take the responsibility of having a disabled child, because the baby is inside the mother for nine months while she is pregnant. The mother herself feels that it is her responsibility, and family members reinforce this view. In some cases the family may divorce her, due to paternal parents. When the disease is found to be paternally inherited, the mother can feel some relief. But in the case of the USA, no one is blamed, it is very opposite. We can hope that the Japanese attitude will change, so that all take a share in the responsibility.

The responses of the family to this child also differ. In Japan the family wants to hide this child, to see whether there is any institution to take care of him. But in the USA, they say since he is handicapped where is the best place for him to get a better chance. In Japan the mother must take care of the child, with some help from the maternal grandmother. In the USA the father and other family members help the child. The reaction of other members of society is also very different. Other people in the USA may try to help that family.

Of course not all the clients' responses are like this at genetic clinics, but this is one of the most often seen stories. These are personal impressions, but I think this is a reasonable comparison. There are at least three reasons for the different attitude towards genetics by Japanese.

1) In Japan for most people the family name is still the most important issue in their life.

2) People are still prejudiced against the genetic issue.

3) Although it is changing, Japan is still a male-dominated society and women are not treated equally as men. This is especially true of wives, if something happens it is blamed on the wife.

Those are the major reasons that make up typical Japanese thinking. You could call these "ethics", and we can see that people respond very differently to the genetic issue than in the USA. In the past ten years I have been involved with these patients, I wanted to express my views.

Table 1: Comparisons of family actions and genetic counseling in Japan and USA

Subject? Japan; USA

Who comes to the genetic clinic first? Mother (often no other family member knows); Mother and father

What is his family's main concern? Family's name; Boy's happiness

What is his family's response to the genetic issue? Family disgrace, shame; Unlucky

Whose fault is it? Mother feels guilt because she gave birth to him. Family blame her for the family disgrace of a handicapped baby. Sometimes family divorce her, especially when genetic disease is inherited from the mother; It's genetic, its nobody's fault. All the family share this burden

What will family do for this handicapped boy? They try to find some place to hide this boy; They try to get more information to make the best choice for him

Who will take care of this boy at home? Mother must take care of her son without help of other family members. Often the maternal grandmother helps her; All the family take care of their son

What will other people feel about this family? We are very sorry for you, but it is nothing to do with us. We should not get married to somebody from this family; We are very sorry for you, it can happen to my family too. Please tell us what we can do to help your family

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