Editors: Norio Fujiki, M.D. & Darryl R.J. Macer, Ph.D.
Director, NHK Educational Television, JAPAN
I think the issues of the Human Genome Project will lead to a very heated discussion in the future. In two days last week on NHK we had programmes on the Human Genome Project on the Midnight Journal, on which we announced the project. Mostly there is an optimistic perspective on the project, for example we are able to discover methods to treat the incurable diseases. There is potential to find the cause of diseases, and of some hereditary diseases. At the same time we will encounter various difficult problems. What we know is the scientific aspects of the genes. One presentation on the charges of health insurance and the discrimination against people with genetic diseases. I think the situation will get much more serious and we should get prepared for such problems in the future. I have a feeling that regarding the Human Genome Project, it is advanced in the USA, but there is much difference between the USA and Japan so we should be prepared about all the problems in each country. There may be some unavoidable problems, but some we can solve.
In Japan, hereditary disease is still a taboo, we need to change this and make the general public better understand this. The congenital diseases are disliked by the general public. For example, ten years ago, although not to do with genetics, there was a disease hyperclusia which was difficult to detect so that there were many patients who were severely deaf and dumb, but in recent years we can check this disease 2-3 months after birth. Although we cannot treat the disease, we can provide enough training for such people. Ten years ago these children were sent to institutions for the mentally retarded children, they may not listen but have a very good understanding, so they may become violent. But with early diagnosis and appropriate education we can avoid this problem. However, Japanese people hide abnormal children from society.
We broadcast another program 'Can you select a new life?", discussing prenatal diagnosis in the daytime news and at night. For half a year a reporter, Mr Kumamoto, studied the situation of prenatal diagnosis in different countries. He found that in Japan there was such a strong prejudice against hereditary disease. After the programme was broadcast, for three hours we received many telephone calls, and about 300 letters came after the programme. Therefore through this general programme we opened some window through which to observe the opinions of the public. We had calls from the victims of disease, and also many people wanted to know where to go to receive prenatal diagnosis. The apparent abnormality of the baby can result in discrimination. The dignity of their live is neglected. Since, many years ago, before World War II, there was education calling for the respecting of human life, but this is still an important phenomenon in Japan. Thirty years ago President Kennedy in his presidential state of the union address said that 10% of people have abnormality, and they are unfortunate and unlucky, and it is the responsibility of all people to help them. This concept does not exist in Japan. There are social welfare and institutions, but we do not generally have such a consciousness of helping such people. In order to have such a feeling, education is most important.
What I would like the educators to do is to educate the doctors. Yesterday, we heard that there are few courses in genetic counseling for doctors. I think it is necessary to provide educational training for practitioners. I think enlightenment of the knowledge of genetics is very important, and I think it is the responsibility of us to provide information of the human genome analysis to the doctors. Also it is important to provide accurate information to the mothers who are pregnant. If we have prejudice, such information will be negative. As presented by Prof. Makino, another important area is education in the Junior and Senior High Schools. When we studied biology we learnt the ideas of evolution of Darwin, the genetics laws of Mendel, and the double helical structure of DNA has been taught. But in the schools the value systems are not taught enough and prejudices remain. We need to teach them not to have prejudice against the handicapped. What is important is to provide wide and accurate information to school students. Education at schools should be reviewed.
Further there was the discussion of the relationship between the mass media and the scientists, actually the influence of NHK on the general public is very large. When we broadcast a programme we are very careful that it is based on facts. For each fact we try to have an endorsement of each fact. This is true of other television companies too. We have to learn things and collect information, and look at the quality of the information. At the same time we have to have cooperation from the experts. When we make a programme about medicine, we also need to be up-to-date. Doctors are busy with their practice and they may have difficulty in keeping up-to-date too. Also, in one case, a very famous professor said he would not appear on television because everyone should depend on the doctors for information, this was said thirty years ago and still today. It is somewhat improved, but still doctors will say they have problems in clinical visits because the programme provided too much information to the general public. Judging from this, we should not only depend on the professionals. Regarding informed consent, you need to have enough information, on the same level as the doctor. We should enlighten ourselves so that we can be on the same level.
Finally when I was reading a book I read that progress in genetics will improve our quality of life. However, a believer of Darwinism said that development of genetics will not bring about happiness and peace because the science will give values that are not the basis of happiness. The science and technology has provided a tool so that human beings may become happy. I mentioned before the programme, "Can you select a life?". A mother whose first child was Down's syndrome said that she received diagnosis that the second fetus was also Down's syndrome. So she had a difficult time to decide, but at that time the fetus started moving in her stomach so she said she felt she could not kill a fetus that was moving, so she decided to bear the child. In the future genetic diagnosis will be more developed, but in such days even if we have such information there will be people who select to bear children with abnormality. I think that the right of people to select their own response to the knowledge provided by science and technology is important for the future.