Editors: Norio Fujiki, M.D. & Darryl R.J. Macer, Ph.D.
Director, Wajima Health Center, Ishikawa, JAPAN
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.
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