Editorial Preface and Summary, pp. 3-5 in Bioethics and the Impact of Human Genome Research in the 21st Century

Author: Norio Fujiki, Masakatu Sudo, and Darryl R. J. Macer

Editors: Norio Fujiki, Masakatu Sudo, and Darryl R. J. Macer
Eubios Ethics Institute

Copyright 2001, Eubios Ethics Institute All commercial rights reserved. This publication may be reproduced for limited educational or academic use, however please enquire with the author.

This book includes 41 talks presented at the Seventh International Bioethics Seminar in Fukui held during 1-3 November, 2000, in Fukui International Association Building. The seminar was divided into three parts, pharmacogenomics and DNA polymorphisms, guidelines for medical genetic services, and special lectures for MURS Japan. We hope that this meeting has further stimulated the developments of bioethics and also educated the general public in the fields of science, technology and society.

These papers include those from 16 foreign and 21 Japanese invited speakers coming from the various fields of medicine and biology, as well as sociology, ethics, law, philosophy and science policy, together with other foreign and Japanese academics and members of the general public. The meeting followed the same general issues which we have discussed, the ethical, legal and social issues (ELSI) of the human genome project, and the promotion of human dignity in the face of advances of science and technology, in order to make a bridge between science, technology and society.

This is the third in a series of three meetings, starting with the Sixth International Tsukuba Bioethics Roundtable, chaired by Macer, which was followed by the Bioethics, Health and Environment conference in Tokyo in cooperation with the International Association of Law, Ethics and Science in Tokyo, chaired by Judge Byk.

In the evening of 1 November we had special lectures of MURS Japan considering the issues of scientific responsibility, with the President of MURS Japan, Professor Okamoto, followed by Reverend Kimura of Eiheiji Temple, which coincides with the occasion of the 800th anniversary of the Grand Reverend Dogon's lessons. Then Dr. Fujita of Kyoto Pasteur Medical Research Center who spoke on life and morality, and Professor Yamori of Kyoto University who spoke on long life and healthy longevity, which has a great significance for the general public. These lectures are at the end of this volume so that more people can understand the importance of scientific responsibility for scientists.

The opening ceremony on the 2 November, started with Fujiki's presidential address, where he talked on the history of the International Bioethics seminars in Fukui, remembering the first visit of Jean Bernard, the honorable former chair of the National Bioethics Consultative Commission on Ethics in the Life Sciences of France, which was in 1978. He emphasized that scientific responsibility in science and technology is essential, and also mentioned the UNESCO Universal Declaration on the Human Genome and Human Rights of 1998. Following his talk the Governor of Fukui prefecture, Mr. Kurita, and the President of Fukui Medical University, Professor Sudo, and the Hon. President of this seminar, Professor Okamoto, gave their welcome addresses. We also received the congratulatory message from Jean Bernard.

Then we had three plenary lectures on the issues of law and ethics and human genome sciences and technology, by Judge Christian Byk, Professor Robert Kneller and Professor Yuji Kobara. They represent the fields of ethics, law and science.

The session on pharmacogenomics started with Dr. Fujita (Director of R&D at GlaxoWellcome, Japan) who talked on the significance of pharmacogenomics in the areas of drug research and development, by using human genome analysis and focusing on the future prevention of common diseases. After his paper he also recalled the memorial efforts in Japan of several scientists including K. Matsubara (Former Director, HUGO Pacific), Y. Sakaki (Director, HUGO Pacific), T. Noguchi (President, Pharmacogenomics Forum), and M. Fujita (Takeda Pharmaceuticals). Then the next paper by Professor Kiso introduced a new field proteomics that is part of pharmacogenomics. Then the next talk by Mr. Yokoyama, the editor of Nikkei B.P., was on recent trends in the pharmacogenomics and industry in Japan.

In the afternoon of 2 November the basic techniques of DNA polymorphisms, such as DNA chips and SNPs, were discussed in a session chaired by Professor Sugano, talking about the completion of cDNA libraries that have been developed. Then Professor Hayashi talked on the techniques in the Human Genome Diversity Project, using capillary electrophoresis and fluorescent illuminated methods. These save time and money with this simplification of the techniques, while also avoiding technical error. Finally the vice president of Myriad Genetics, Mark Skolnick, emphasized the importance of privacy in conducting epidemiological surveys, using such genetic information carefully to avoid genetic discrimination and the leakage of that information, and also talked how we have made a number of efforts for international cooperation and public support.

The next session was on the clinical use of DNA polymorphisms and was chaired by Professor Miki in the Geriatrics Department of Ehime University Medical School. He talked on the significance and techniques to research aging problems. The whole of the human genome has maybe 100,000 genes over 3 billion base pairs, so that there maybe almost 1 million SNPs. He summarized the, so-called genetic susceptibility of individual differences, and discussed tailor-made genetic diagnosis and therapy. Then Professor Kneller of Tokyo University discussed about the issues of privacy in genetics introducing some recent studies from United States. It is important to have international projects for academic and industrial and governmental cooperation so that we can develop basic projects plans, infrastructures, and produce quality information and useful results.

Before the reception party we enjoyed the performance of the Fukui Junior Orchestra to relax from such hot discussions during the one week that started in Tsukuba. We appreciated the excellent food of Fukui and the atmosphere with the culture and traditional arts of Echizen Washi which we in Fukui are proud of.

In 8 November, 1997 we had a satellite symposium on medical genetic services and ethics in Fukui, immediately after the UNESCO Asian Bioethics conference in Kobe. The WHO guidelines on ethical issues in medical genetics and provisions of genetic services, has been translated into Japanese and appeared in the proceedings of that conference, Bioethics in Asia. The WHO working group has advised on the how to integrate ethical issues into overall public health policies and practices as well as for international health cooperation. WHO has contributed to coordinating national regional and local approaches, identifying gaps and attempting to harmonize the standards and practices in global level. Finally international guidelines were proposed in Geneva in December 1997 that have also been translated into Japanese as mentioned above.

This time we discussed follow-up studies on the guidelines on medical genetic services in the morning of 3 November and this panel discussion was chaired by Professor Matsuda, the President of the Japan Society of Human Genetics, and Professor Wertz from the Shriver Center in USA. There were ten papers from three Japanese and seven foreign countries. The panel participants and the audience discussed the importance of cultural and social consequences of genetics, and public education and media communication on topics including genetic counseling, reproductive and regenerative medicine, prenatal and preimplantation diagnosis, DNA carrier and presymptomatic diagnosis. Also patient and parent associations play important roles and public perception of genetics has influenced the way that medical genetic services are implemented in different countries, all for the goal of safe and effective health care.

Included in these discussions were a description of the follow-up studies of the Universal Declaration on Human Genome and Human Rights by Professor Ida and we should note that article 19 of that Declaration emphasizes solidarity and international cooperation, that the state should respect and promote the practice of solidarity towards individuals, families, and population groups, who are particularly vulnerable or affected by diseases or disability resulting from genetic factors. We should further continue the research on the notification, precautions, and treatment for those who suffer from genetic diseases. The freedom of research is important. In conclusion the participants were urged to consider these issues as a matter of priority for global consultation and awareness.

As the ethical guidelines related with medical sciences, fundamental bioethics in genetic services, genetic counseling, genetic testing and screening, informed consent, autonomy of decision making, privacy as well as genetic susceptibility, prenatal and preimplantation diagnosis, and repeated genetic counseling before and after testing, the issues of stored blood and tissues and DNA samples, and access to them, have all been discussed.

On the afternoon of 3 November we had the second series of plenary lectures starting with Professor Takaku, the chair of the subcommittee of the human genome project, and co-chair of the National Bioethics Committee of Japan, and then Dr. Williams, the vice president of the Foundation for Genetic Medicine, followed by Professor Shimizu, the vice chairman of the human genome project in Japan, who all talked under the general theme of human genetics and medicine in the 21st century. Professor Takaku talked on recent developments of science and technology and their clinical application for reproduction and regenerative medicine including the brain sciences, and the ethical issues that they raise. Dr. Williams talked on some cross cultural comparisons of human genetics. Professor Shimizu talked on recent developments in the human genome projects and his own research on chromosome 21 and 22. There was an emphasis on the necessity of public education in order to reach social agreement with such tremendous development of science and technology, as has been stated by Professor Imura, the President of the National Bioethics Committee of Japan and the chair of the Cabinet Council on Science and Technology.

At the end of the Fukui seminar there were some conclusions on the future of Bioethics, Health and the Environment by Macer, the chair of the Tsukuba Bioethics Roundtable (TRT6). This was followed by some discussion and then conclusions from the Tokyo meeting from Judge Byk, and further general discussion by all participants to the Fukui seminar. Then there were closing comments from Fujiki and Professor Ueda, Hospital Director, who closed this seminar.

In summary we have discussed the ethical issues and recent trends in pharmacogenomics, basic and clinical applications of DNA polymorphisms, DNA chips and SNPs, as well as guidelines on medical genetics services. The participants in Fukui totaled over 100 invited speakers and participants, with 30 foreign guests, 60 members of Fukui Life Academy, and high school students. We were supported by Monbusho, Japan Expo 70 Fund, Osaka and Tokyo Pharmaceutical Manufacturers Associations, Smith Kline Beecham, Toyobo, as well as Fukui Prefectural Government, Fukui International Association, Fukui Convention Bureau and Fukui Medical University. We also especially thank the three interpreters, Dr. Richard Clark, Mrs Kazumi Inagaki and Ms. Fumi Maekawa. As well we thank all secretariat staff, and members of the Department of Internal Medicine of Fukui Medical University, including especially, Professor Kuriyama, Hirayama, and Mrs Nakagawa and Hayashi, and Mr. Yamamoto of Studio Nippo. We hope that this further publication from Eubios Ethics Institute will stimulate the development of cross cultural understanding and consideration of the impact of science in society.

Norio Fujiki Masakatsu Sudo Darryl Macer

President, IBSEF President, Fukui Medical University Director, Eubios Ethics Institute


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