Editors: Norio Fujiki, M.D. & Darryl R.J. Macer, Ph.D.
In 1990 the Inuyama Declaration (1) was issued that stated that there weren't any inherent problems of human genome analysis. But, what will happen in the future? Will it be true? The progress of the Human Genome Project will probably cause inherent ethical and social problems and therefore we should prepare ourselves for these changes, and prepare counter-measures. The nature of genetics causes problems in the way that medicine is applied.
Considering the features of the environment in Japanese society, I would like to point out three important points. They are related to the information, values and social system. In other words, it is associated with all aspects of Japan.
Japan is a very sophisticated information society, however, as far as the Human Genome Project is concerned, especially from the aspect of the information available for people, it is insufficient. The wider discussion has just begun among the representatives, and educational activities for people in general are yet to be started. However, in the USA for the last two or three years debate and discussion has been actively and positively conducted. In the mass media there have been many articles discussing the research. In Japan, such education should be done concurrently with Human Genome Project research for the general public, in language that can be easily understood by people. By using television programmes, and different channels of communication, seminars, or conferences like this one. However, the scope of coverage is still limited.
Compared with Western society, Japanese society includes certain unique behaviour patterns, especially with regard to genetics (2). There is prejudice against genetic disease in Japanese society, and patients with genetic disease are subject to prejudice in society. Even among educated intellectuals that prejudice still exists. We respect order and homogeneity. These culture and traditions might be challenged by what is revealed by the Human Genome Project. The heterogeneity of genetic inheritance among people should be fully educated and understood by people in Japan. What is essential is education at the secondary school level in Japan for people to better understand the issues.
Secondly, the social systems, health insurance and life insurance and legal systems need to be considered. What has particularly been debated in the USA is life insurance, health insurance and employment. There have been several conferences focusing on these issues (3), and also the mass media has showed interest. In the USA there has been genetic discrimination of people who have genetic problems (4). Fortunately in Japan, all people are covered by health insurance, therefore, even if people have incurable disease there is no retraction of insurance coverage. All patients are covered on an equal and fair basis. This system should be sustained for long into the future, it is very essential.
The Human Genome Project will open up a large potential for genetic diagnosis. At the moment, several hundred genetic diseases can be analysed, but in the future, adult disease such as cancer, diabetes, and hypertension will be able to be diagnosed together with the risk at the genetic level. We should treat those with high risk. The employer of life insurance company may be reluctant to have open policies which include those susceptible to genetic disease. Therefore we need to be very careful to protect these people's individual interests. A system should be prepared for this.
There will be an unprecedented amount of information provided through the development of genetics. However, because of this, there may be some time gap between the ability for diagnosis, and the ability for therapy or prevention. This gap will cause some problems. It will be associated with many diseases. For example, if we go to a human genome investigation center your genome could be examined and diagnosis provided. In Japan we have a dry dock routine check up system, quite widely established throughout the nation. This could be quickly adjusted to include genetic diagnosis as one item to be included. However, there is a problem, the diagnosis may be available but there is no therapy available to treat those who have a bad result. This is in a way a devastating result which we would like to avoid. The goal of medicine is the early diagnosis of a disease followed by early prevention and treatment. However, although there is early diagnosis, there is no prevention or treatment or therapy. It will just cause psychological anguish to the patients. The diagnosis of disease is not the ultimate goal of medicine, the prevention and therapy is the goal. However, diagnosis is a starting point for effective therapy, so when there is a gap between diagnosis and therapy, how should we treat this? This is an important social problem in the future. Therefore in association with the Human Genome Project we have to prepare ourselves for countering this problem.
Blood or the environment of child rearing, which is more important? This is the question of genetics and the environment. Genetic engineering will make this relationship more clear. In some cases a single gene is related to one phenotype, on the other hand multiple genes can be associated with ambiguous phenotypes. Therefore it is diverse. Also, environmental factors exercise influence to humans. Therefore the interpretation of diagnosis coming from the Human Genome Project is not very clear cut or decisive. It has a lot of problems of diversification and uncertainty. We have to consider these uncertainties and probabilities.
Some genes might be favourable, and others unfavourable, but we should not discriminate against any human beings based upon preference for genes. The preference of genes will be dependent upon the environment. Although we cannot change genes, we can make some counter-measures to progress the therapy of disease by changing the environment. Under these circumstances how do the public react. Generally, they are not used to the probability or statistical issues, and therefore the decisive argument is more acceptable. But decisive arguments can sometimes make the real situation ambiguous, therefore we have to have a full analysis concerning these factors.
As to the social approach, I would like to propose the following counter-measures. We have to provide people with sufficient information about genetics and medicine. If such an understanding is lacking it will jeopardise the advancement of science and technology. We must use the media, and seminars to inform the public. We have to deepen the public understanding of new genetic medicine through scientific associations and citizen's forums. Perhaps national level forum's are required. What is important for happiness and the health of individuals needs to be discussed. The nation should not interfere or control the genomes of individuals. Genetic discrimination should not be allowed at all. Human genomes are biological assets for free people, as part of freedom. As in the Inuyama (1) and Valencia (5) Declarations, those things should be made clear. We have to fully understand the issues. Scientists have responsibility to help the public understand what science really promises, and at the same time help the understanding of the things that science cannot give. Science gives freedom of choice, but to choose is up to individual persons (6).
1. The Declaration of Inuyama (24th Round Table Conference of CIOMS, Genetics, Ethics, and Human Values: Human Genome Mapping, Genetic Screening and Therapy, July 1990)
2. Ohkura, K. & Kimura, R. in Wertz, D.C. & Fletcher, J.C., eds., Ethics and Human Genetics: A Cross Cultural Perspective (Heidelberg: Springer-Verlag 1989).
3. Rothstein, Mark A., ed., Legal and Ethical Issues by the Human Genome Project, Proceedings of the Conference held in Houston, Texas, March 1991.
4. "Health Insurance Discrimination", in Genewatch (February 1992).
5. Valencia Declaration on Ethics and the Human Genome Project (14 November 1990).
6. Rowley, Peter T., "Genetic screening: marvel or menace?", in Rosemary Chalk, ed., Science, Technology and Society: Emerging Relationships (AAAS 1988).