Editors: Norio Fujiki, M.D. & Darryl R.J. Macer, Ph.D.
Chairman, Organising Committee, President, Fukui Medical School, JAPAN
Almost five years have passed since the First Bioethics Seminar in Fukui in 1987. The keynote address by Prof. Jean Bernard discussed bioethics, which was a new concept in Japan at that time. Now, the knowledge and technologies of genetic engineering, in which the genes causing specific genetic diseases can be identified, have been tremendously developed. The diagnosis, treatment and prevention of such incurable genetic diseases through the development of gene mapping and DNA sequencing, as well as clarification of the molecular mechanisms of gene expression, have been greatly developed by the Human Genome Research Projects in the USA, Europe, Japan and other countries.
It is our great pleasure and honour to extend a welcome address for over 200 participants. Twelve foreign academics, including members of the Human Genome Organisation (HUGO) and the National Center for Human Genome Research in the USA, Europe, and Asia, as well as thirty one Japanese academics, including medical and biological scientists who belong to the Ministry of Education's Human Genome Research Project, and members of the Japan Society of Bioethics and of Human Genetics, who are involved in various fields of sociology, psychology, ethics, law and economics, as well as medical and biological sciences, will present papers on the ethical, legal and social issues.
The topics have been selected by the organising committee as international dialogues for clarification of basic concepts and technologies of Human Genome Research. That is, overviews of the Human Genome Research Project, bioethical issues and clinical applications for the diagnosis, treatment and prevention of incurable genetic diseases, as well as ethical, legal and social issues, will be presented and discussed. Lastly, we propose scientist's responsibility for the whole human species and its environment, and we intend to have a public lecture on the Human Genome Project by a scientific journalist, Mr Takashi Tachibana, in the same auditorium.
In closing this address, I hope that this seminar will be a rich and rewarding experience for all of us. Let us greet old friends and make new ones. I also hope participants from abroad will be able to experience traditional culture, such as the Zen Buddhism of Eiheiji Temple and "Echizen Washi", Japanese handmade paper, and enjoy the beauties of nature during your stay in Japan.
Governor of Fukui Prefecture, JAPAN
During that time the progress of science and technology in the area of medicine was very rapid. On the other hand, very sophisticated technology such as in vitro fertilisation and organ transplantation has been applied to the clinical area and has influenced the life and ethical values of people. Especially the issue of brain death and organ transplantation has involved a lot of discussion from the citizens of Japan from a bioethical point of view. Under such circumstances, at this time and considering the next generation of medical technology in the area of genetic medicine, we are going to discuss the measures designed to promote bioscience respecting the life of human beings, and the dignity of human beings, and will have a discussion from the ethical point of view, as well as from the philosophical, sociological and legal points of view. I think that this will be very significant for the thinking of bioethics in the future.
In Fukui prefecture, the society matures responding to the diversification of the value systems. In response to the changes from material richness to spiritual richness we have incorporated a prefectural theme, which is vitality and comfort. We are aiming at improving the vitality and comfort, and at making a wealthier society in Fukui. We are expecting a great deal that this seminar will provide clear direction for the 21st century.
Fukui prefecture is a very nice area, so I would like to conclude my welcoming address, by wishing you the success of this seminar. Thank you for your kind attention.
Mayor of Fukui City, JAPAN
I've heard people say that the human genetic information is included in about 100,000 genes, written by four nucleotides, and to read this sequence is the Human Genome Project which the Ministry of Education is supporting over a five year plan. With the present rapid progress of biotechnology, the human genome started to be discussed not only in the science and technology, and medical field, but also it has raised discussion in human bioethics. Recently conferences on the Human Genome Project have begun to be held at many places throughout the world.
In 1987 the First Bioethics Seminar in Fukui was held, so this is the second time. This conference is an international seminar where people will collectively discuss ethical, legal and social problems about human genome research, and people from a wide range of fields are gathered here. These include specialists of the Human Genome Research Group, the Ministry of Education, members of the Japan Society of Human Genetics and of Bioethics, researchers from the US Genome Research Center and the International Human Genome Organisation, and a wide range of researchers from sociology, law, philosophy, religion and ethics.
To hold this seminar is also very significant for Fukui city as an International Convention City. Also I think it is interesting for the general public because during this seminar an address will be made to the public, and the seminar materials to be published will be for ordinary people. I really hope that this seminar will become something that ordinary people can understand easily, because this problem cannot be avoided for future research on life.
Our Fukui is an old historical city surrounded by rich green and nature. I would be very happy if you take this opportunity and can enjoy to the full the atmosphere and feeling of Fukui as a nature city, walking around places such as the site of Ichijodani, the ruins of the Asakura Family Mansion, which played an important role in Japanese medieval history; and Asuwayama Park which has vivid seasonal colours; and the Echizen Seashore in this early spring season.
I want to close my celebratory words. I want to show deep respect to Professor Fujiki of Fukui Medical School and his colleagues, who worked very hard to organise this conference. I wish the success of the conference, and the progress and happiness of all the attendees.
Hereditary Disease Programme, World Health Organisation, SWITZERLAND
It is clear that the further implementation resulting from Human Genome Research will make it possible for all monogenic diseases to be traced to a specific chromosomal location within the next few years. This knowledge will help develop treatment and prevention. It will also allow predictive diagnosis of an increasing number of genetic diseases of late onset, and in the future may allow the identification of individuals at high risk for common diseases of middle life that can be prevented or alleviated by diet, drugs, or a more healthy lifestyle. At a later date, human genome research is likely to provide further insight into gene regulation including understanding of fetal development and abnormalities.
An important future application of genetic technology may be the identification of people with genetic risk factors for common diseases that are now the main course of morbidity and mortality in adults. However, many problems may arise when this becomes available and its necessary to learn more about the social implications of the proposed genetic testing and screening. Also while this approach has been long awaited, there is a great danger that its misuse will be common unless recommendations on its proper use are discussed and introduced. It is important that appropriate programs for the new technology be developed in advance before inappropriate programs arise spontaneously. This is the main reason why we are gathered here today. The main issues we will concentrate on include, ethics, legislation, public health implications and the provision of experts opinions in the area of major health importance.
As you are aware, the work of WHO is based on its constitution, which states that health in the broad sense is complete health of the physical, mental and social well being. The health ethic of WHO is that there can be no liberty or economic development or human progress unless we meet the minimum conditions for human health. In this context, genetic information and ways of avoiding genetic risk must be provided according to the basic ethical principles of medical genetics. They are that the autonomy of the individual or couple must be respected, that they have a right to full information given in a way that they can understand it, and that confidentiality must be preserved. WHO fully supports the objective of this seminar and looks forward to receiving your expert advice.
I would like to close by wishing you every success in your discussion. Thank you.
Like you, I am convinced of the need for careful deliberation at the international level of the various implications of human genome research. In accordance with the recommendations of the UNESCO Scientific Coordinating Committee on the Human Genome, ethical issues related to human genome research are encompassed within UNESCO's Human Genome Project. However, much as I should be very interested in taking part in the seminar, my previous commitments unfortunately preclude my doing so. I have heard, on the other hand, that Professor Grisolia, Chairman of the UNESCO Scientific Committee on the Human Genome Project, has also been invited to take part in the seminar. I should therefore like to propose that, with your concurrence, he represent me at the seminar.
I am confident that the discussion at the seminar will be wide-ranging and fruitful, and I look forward to receiving a full report on its outcome.
Director-General, World Health Organisation, SWITZERLAND
Although I am deeply convinced of the importance of the issues that will be on the agenda, I regret to inform you that, due to other commitments, I am unable to accept your kind invitation. I am pleased to learn that my colleague Dr V. Bulyzhenkov will be attending, and I intend to request him to provide me with personal briefing on the outcome of the Seminar.
May I take this opportunity of wishing you and the members of the Organising Committee every success in your preparations for this important event.
Secretary-General, Council for International Organisations of Medical Sciences, World Health Organisation, SWITZERLAND
I do not need to repeat how important are your Seminars which discuss the progress in medical genetics and in human genome research from an ethical viewpoint.
On behalf of the Council for International Organisations of Medical Sciences, I congratulate you for your activities in this particularly important field in medical progress. I take this opportunity to express my best wishes to you and the participants for a very successful seminar.