- Norio Fujiki, MD.
Vice President of International Bioethics Committee of UNESCO; Former Chairman of ELSI Group of Human Genome Research of Japanese Ministry of Education; Emeritus Professor of Fukui Medical School, Matsuokacho, Fukui Pref., 910-11, Japan (FAX 81-776-61-8110); Medical Advisor of Gene Analysis Laboratory in Tsuruga TOYOBO.
- Prepared with the cooperation of colleagues, especially M. Kuriyama, M. Hirayama, T. Mutoh, T. Azuma, S. Nakazaki, Y. Nakagawa, T. Ebata, S. Murayama (Fukui Medical School, Dept. Int. Med. & Med. Genet) and K. Mano (Nagoya First Red Cross Hospital).
For over 40 years, I have made every effort to help alleviate anxiety about genetic diseases and handicap among the general public, through genetic counselling, which my respected late Professor Emeritus T. Komai taught could contribute to the welfare and health of human beings, through applying human genetic knowledge. After graduation from Kyoto Prefectural University of Medicine, I was taught the dignity of humanity by late Professor Emeritus M. Masuda, who himself noticed his own suffered from lung cancer for 6 years, while I studied in his department of internal medicine. Thereafter, I learned the dignity of human beings from the handicapped children in Aichi Prefectural Colony for Mentally and Physically Handicapped, even though they were doubly handicapped physically and mentally. Not only myself but also many physicians have learned from severely handicapped infants, the facts that even the physically and mentally handicapped have great human dignity, which they never lose.
In the last 35 years I have made every effort in genetic counselling (3, 6) in the clinical applications of medical genetics, in order to contribute to medical practice, including early diagnosis, mass screening, prenatal diagnosis and carrier detection, as well as treatment and prevention of hereditary diseases and congenital malformations, and to discuss the ethical, legal and social issues (ELSI) of medical genetics.
History Of Bioethics In Japan
Bioethics has had a long history since the Hippocratic Oath. After the introduction of bioethics in Japan by Kimura (26) and Hoshino (37), who came back from the USA and Canada, the discipline has compared traditional Japanese values with ethical insights of scholars from around the world.
Conferences, workshops, special committees, forums and various reports, have discussed bioethical standpoints and a number of publications in the last 15 years reflect not only the topics of major interest, such as organ transplantation, euthanasia, cancer notification, as well as genetic diagnosis, therapy, in vitro fertilization and genome research, but also equally these has been public contact and debate and the rights to be born, live and die, decision making and genetic intervention. Seen as being philosophically grounded in Western individualism, organ transplantation raises many conflicts with traditional Japanese values, in particular the predominant community outlook that stresses group harmony as the primary social good, and the belief that the body, - living, dying and dead - is not an entity distinct from the mind or soul, This was made strikingly clear, when in 1986, a surgeon, Wada, in Sapporo Medical College performed the first Japanese heart transplantation, on this led to a complete defect on heart transplantation and prompted a lively and ongoing debate in the Japanese public and medical, legal and social communities.
Thereafter, many bioethics committees in medical schools and scientific communities have been established, not only among biological, medical and scientific, but also among social and literal scientists, and discussion has taken place in such bodies as The Japanese Society of Bioethics (Sakamoto, Hoshino), Japanese Medical Association (Takemi, Haneda, Murase), Ministry of Health & Welfare (Hayashi), Science Council of Japan (Kondo), Japanese Society of Transplantation (Hashimoto), Japanese Bar Association (Bai), Bioethics Network (Kimura), and Bioethics Committees in Kitasato Medical School (Sakanoue), as well as in Sangyo University Medical School (Tsuchiya), Japan Euthanasia Association (Nakagawa) etc., have been rapidly developed.
Since 1976, The Bibliography of Bioethics (2) has been published by Warren in USA and Japan Medical Ethics References (7) has been published by the Bioethics Committee in Tokai University Medical School since 1983. Although still immature, Japanese studies on bioethics have been gradually developed year by year.
First International Bioethics Seminar In Fukui (1987)
At the time of the visit to Fukui by J. Bernard, former President of French National Academy of Sciences and present Chairman of French National Consultative Committee of Ethics in Life Sciences, we had the first IBSF chaired by Fujiki (12) and Kajikawa in April 1987. In his plenary lecture on "Recent Trends on Bioethics in France", he talked of recognition of the urgent problems resulting from the rapidly developments of science and technology and both exploration of these common areas and attempts to bridge the cultural differences between the East and West. After his main lecture, "Dignity of Human Life" (8) (Rev. Inouye of Eiheiji Temple) and "Bioethics in Canada" (Miller) and "Bioethics in Thailand" (Ratanakul), followed during the plenary session chaired by Nakagawara. Kimura and Neel in both USA (14), were unfortunately unable to joint but provided their presentation for the proceeding. The afternoon session, chaired by Kusunoki, included "Development of Bioethics in Japan" (Nakagawa), "Medical Ethics in Medical Education"(Sakanoue) as well as a general discussion by Commentators, such as Kuwaki and Yamamoto, from philosophical standpoints.
These international trends in bioethics benefited the over 180 participants throughout Japan, including physicians, students, priests, nurses, lawyers and researchers in biotechnology as well as general public. As a pre-seminar evening, public lectures by Ohura, and Nakamura on "A Pediatrician's Monologue" and "Life Sciences and Bioethics" were well reviewed for over 200 general public and participants.
Bioethical intervention, stemming from the respect of humanity and science, as well as maintenance of a non-commercial orientation, were discussed from the multidisciplinary standpoints of biosocial science. It was generally agreed that bioethical principles should be established taking into consideration the historical, cultural and national traditions of the respective participating countries. It was considered most significant to create ethical guidelines and establish bioethics committees according to the lines of those presented in France, Thai, Canada and USA and to satisfy both humanistic and safety considerations of the general public, who were very welcome since one of the aims of this seminar was education of the community at large, emphasized at Nakasone Summit in 1984 Conference of Life Science and Mankind (2).
Among the many issues confronting us, the rapid developments in the life sciences, such as clarification of quality of life (9, 10), recombinant DNA experimentation, genetic engineering and its application for prenatal diagnosis (1) and genetic counselling, as well as euthanasia, organ transplantation, revelation of cancer diagnosis and brain death were discussed.
On the second day, the lectures dealt with bioethical problems concerned with special fields of human genetics, chaired by Ohkura, Sudo and Tominaga; genetic counselling (Fujiki) (4) prenatal diagnosis (Soma) (1), DNA diagnosis and treatment (13) (Sakaki), international comparison of ethical issues (Ohkura), reproductive medicine (Mori) education of handicapped (Fujisawa), international differences of bioethics (Hoshino) and attitudes to prenatal diagnosis (Shirai). During the final summarizing discussion chaired by Torizuka and Nakagawa, emphasis was intentionally placed on moral issues, not only specifically concerned with how we should survive in this era of rapidly technological advancement, but rather concerning the multidisciplinary processes, not only within but also between the specified areas of sciences and technology. Of course, bioethical considerations were established from the standpoints of medical care and included the doctor-patient relationship, autonomy in decision making, technology assessment, confidentiality and informed consent.
Council For International Organizations Of Medical Sciences Conference On Genetics, Ethics And Human Values (1990)
The Conference of CIOMS (16) was aimed at creating an international interdisciplinary forum to enable the scientific and lay communities is exchange views on topics of immediate concern, unhampered by administrative, political or other considerations. The participants discussed not only the scientific and technical basis of new developments in biology and medicine, and other related areas, but also their social, economic, ethical, administrative and legal implications. Participants in this conference were prominent representatives of different fields of medicine, natural and social sciences, philosophy, theology, law and health policy -making. These multidisciplinary approaches were felt to be the best means of obtaining a comprehensive picture of issues that do not fall within the exclusive domain of any one profession.
Research under way on human genome mapping and sequencing ushers in a new scientific era, perhaps a revolution in medicine in the 21st century. This field is of much topical concern and the initiation of an international dialogue on rights and responsibilities of individuals and societies is very timely. This conference on "Genetics, Ethics and Human Value, Human Genome Mapping (16), Genetic Screening and Therapy" was held in Tokyo and Inuyama on 1990 July, under the auspices of the Science Council of Japan, CIOMS, cosponsored by WHO, UNESCO, as Fifth Series entitled "Health Policy, Ethics and Human Values : An International Dialogue", began in Athens in 1984. This conference included 102 participants from 24 countries.
After opening addresses by Organizing Committee Members (Kondo, Bankowski, Inoue, Yagi), it began with the keynote address of Wyngaarden, who emphasized the need for international dialogue, between understanding and acceptance of bioethics in rapidly developing areas of medical genetics. Then three plenary sessions covered human genome mapping (Worton, Shimizu, Knoppers and Cook-Deegan on its application, present trends, special and political problems), genetic screening (Cao, Wexler, Fletcher, Sakaki, Takagi for prenatal and presymptomatic diagnosis, DNA diagnosis, international consensus on gene screening), and gene therapy (Parkmann, Friedmann, Yagi, Gregorius, Iyanatullah, Wartburg), for many problems on gene diagnosis not only by physicians, but also by lawyers, policy makers, ethicists, priests and Diet members. The meeting then divided into three working groups, chaired by Worton, Knoppers, Wexler, Kimura and Inouye, Cook-Deegan and their proceedings finally summarized by Danielson, Osuntokun as physician and scientist. The closing ceremony took place at Inuyama with closing remarks, Bankowski, Inouye, Villardell presented as the Inuyama Declaration. This includes ethics in human genome research, transferring knowledge, gene testing, gene therapy and prohibition of germ line gene therapy, the scientist's responsibility, and information provided to developing countries, which will be helpful in stimulating a continuing international consideration of the topics discussed against different cultural backgrounds.
International Association Of Human Biologists - Japan Society Of Human Genetics Joint Symposium On Medical Genetics And Society (1990)
On the occasion of the 20th anniversary of IAHB and the 35th annual meeting of JSHG, over 500 participants of both societies from 15 countries, met in Fukui on July 1990, immediately after the CIOMS Conference in Tokyo and Inuyama, under the auspices of WHO, UNESCO, CIOMS, IUBS as well as IAHB and JSHG.
The meeting of IAHB(20) with 22 lectures from 16 countries and 6 Japanese lecturers, with 9 other participants from 6 countries and 96 other Japanese participants, opened with Fujiki's Presidential lecture, in which he traced back the history of IAHB, which grew from the highly successful Human Adaptability Section of the International Biological Program since 1960, to give back ground to his own studies on consanguinity in isolated communities in Japan, and on the effects of environment on Japanese migrants to Hawaii. There followed the three symposia, while dealt with a demographic aspects of isolation, chaired by Neel and Yanase, (Verma, Bochkov, Mukherjee, Papiha, Platto, Kondo, Vogel), by migration features, chaired by Baker and Mimura (Hara, Nowell-Norris, Kanazawa, Prior, Rudan, Bonne-Tamir) and methodology of isolation and migration and disease patterns, chaired by Malhotra and Omoto (Garruto, Lefevre-Witier, Saito, Sukernik, Hamaguchi). The final session, chaired by Hausere, Roberts reviewed the programs achieved to the Human Genetic Section of Decade of the Tropics Program with particular reference to DNA Variations. This provided a smooth link to the program of JSHG for the following 3 days.
The program of JSHG (President: Fujiki) included a session on new developments of DNA technology, human genome projects and Western contributions to human genome research with the participation of young Asian scientists who not only presented their own work but also were able to meet and learn from the distinguished scientists from all over the world. Since 1973 in London, HGM Workshop has been held at regular intervals and the next workshop was planned to Kobe in 1993. The total number of participants for both IAHB-JSHG was 500 from 15 countries, including USA, India, France, Switzerland, UK, China, Yugoslavia, Korea, USSR, Israel, Austria, Germany, New Zealand, and Belgium. The total number of presentation was over 270, including five symposia, five plenary lectures, two panel discussions as well as nine simultaneous poster sessions. We may say that this led to further cooperative population genetic study in India, and to the commencement of an international consensus survey of the general public in Asia.
On this 35th annual meeting of JSHG the main theme was human genome projects, the most ambiguous of all the biological sciences. We selected 3 plenary lectures by the eminent scientists Frezal, chaired by Fujiki (physical mapping), Shimizu chaired by Sasazuki (DNA sequencing), and Cohen chaired by Matsunaga (Perspectives of HGR throughout the world). Such knowledge of the human genome will be universally applicable to improve human health, genetic diagnosis, and screening as well as treatment. Two symposia on genetic heterogeneity chaired by Higurashi and Suzuki, (Fukumaki, Yamamura, Mutoh, Oishi and Fujiki) and on DNA diagnosis chaired by Matsuda, Nakagome (Matsuda, Niikawa, Abe and Nakamura) as well as many oral and poster presentations.
The final day of JSHG was devoted to two international panel discussions, on education in medical genetics, chaired by Matsunaga and Bulyzhenkov, (Kondo, Neel, Werteleki, Vogel, Roberts, Lo and Malhotra) and on ethics in medical genetics, chaired by Inouye and Bankowski, (Sun, Frezal, Cohen, Wertz and Fujiki), at which 20 invited non-Japanese participants introduced the recent trends in their countries, comparing with Japanese data.
The tremendous developments, which have occurred in biotechnology, coupled with the patients increased awareness and expectation, emphasize the importance of medical genetics, so that medical students must be familiar with the principles of the subject and their application in preventive medicine. Both ethical, discussions covered various applied fields of medical genetics, genetic counseling screening, prenatal diagnosis, treatment and the utility in the research fields of medical genetics. Both followed from the 1990 CIOMS conference. The rights and responsibility of the individual and society figured prominently in the discussion and showed features in common, but also quite marked differences among the different nations represented. In 1962, the Expert Advisory Panel on Human Genetics in WHO pronounce on the teaching of human genetics in the undergraduate medical curriculum and in postgraduate training. This interest has become accentuated due to the rapid advances in human genetics, applying new findings in everyday practices for treatment and prevention and improving health for prolonging human life. In this regard, education should be considered a mandatory function of genetic services, and be provided at undergraduate and postgraduate levels, including primary care, and to the community at large. The latter can be done by providing suitable materials for use within the educational system, and by cooperation with the news media and other community elements, such as parent-patient associations. The main reason why we gathered together in this seminar was to consider possible examples of education in medical genetics in different countries; to try to summarize available experiences and to provide our recommendations which could be taken into account both by WHO and by interested countries.
In the last panel discussion on medical genetics and ethics (17), there were many common features in USA, France and Japan, such as those with respect to prenatal diagnosis and screening, but the situation is quite different in India, China where the infectious and nutritional diseases are of primary concern, and the problem of how to deal with severely malformed newborn was pointed out in the context of the one family- one child policy in China. However, the panel proved to be an important step, leading to a certain level of consensus, and the possible establishment of a kind of guidelines in medical genetics. Ethics issues are equally important, not only in the case of single gene diseases, but also in multifactorial diseases, in which the possibility of detecting individual predisposition to a given disease must be weighed against the risk of misuse of this information. They are also raised in genetic screening and treatment for protection of privacy and confidentiality. Ethical standards and principles of risk and benefits are universal, but their interpretations and applications vary in different cultural settings - national, cultural and religious traditions yield different ethical values and their interaction with health decisions also vary from country to country.
US National Institute Of Health / Department Of Energy Conference On International Aspects Of Ethical And Social Issues In Human Genome Research (1991)
The Conference in NIH on June 1991 associated with DOE, was distinctive in several ways among the Ethical, Legal and Social Issues (ELSI) program of Human Genome Research(HGR). This world wide examination of the issues raised by gene mapping and sequencing, looked beyond a comparative analysis of clinical and domestic, legal issues, and concentrated on topics that may require responses on a truly international level. The organizers, Capron (18) and Wikler gathered an impressive group, including CIOMS, CE, CAHBI, EC'S ELSI, HUGO, IAB, NIH-DOE ELSI, and UNESCO, of more than 70 participants from 15 countries, including the first significant contingent of Japanese and USSR scientists, physicians & philosophers at an ELSI meeting.
There were talks by the heads of the genome projects in each major country (Mori, Mirzabekov & Cook-Deegan), following the keynote address by Director General of HUGO, Wyngaarden, who emphasized the need for international dialogue for understanding and acceptance of bioethics following the development of medical genetics. In the final session, the entire group proposed resolutions on the several topics and narrowed the list needing further internal exploration to provide an international frame work for this process, and established a Global Steering Committee on Ethical and Social Issues on HGR. Chairman, Capron set up a task force to provide interim reports and to continue their analysis (5). Several topics were sent directly to the Steering Committee. On all issues, major objectives capable of implementing the group recommendations to monitor the issues, to ensure that appropriate implementation is occurring.
The first part on the impact on the individual has begun with multinational cooperation on insurance and employment, chaired by Holzman, (Goves, Anderson, Murray (19)), and on forensic applications, chaired by McKusick (Zorkin, Hicks, Reilly) and confined to discuss genetic discrimination. These examined international anti-discrimination laws, as a possible means of supplementing domestic statutes and regulation. DNA fingerprinting also needs international cooperation and protection, to provide protection for criminal suspects and confidentiality of official records among nations, with potential for abuse of civil liberties.
In the second part on scientific independence and neutral advises (Blumental, Takebe, Malkov) chaired by Fujiyama, creating and sharing informations in HGR, (Paces, Stevenson, Grisolia) was studied. Then there were presentations in different areas of HGR (Mirzabekov, Matsubara, Watson), chaired by Cook-Deegan. Sessions on politics and genetics (27), chaired by Yesley (Leng, Babbov, Yonemoto, Kissler, Gutenhausen, Nelkin, Glover, Niermeijer) on ethnicity, race and migration, chaired by Billings (Piazza, Bristein, Tateno, Reilly); responsibility of scientists in the global HGR community, chaired by Niermeijer (Yudin, Frenkel, Fujiki, Ignatiev); international discussions on ethical issues chaired by McKusick (Hondius, Capron, Nakagome, Terada, Wexler, Niermeier, Yudin), and future and potential efforts, chaired by Wexler (Singer, Kokkenen, Handley). After this, a summary session chaired by Capron, including all participants and reporters introduced the resolutions of all session regarding international action on each issues whether any action was needed; what form this might take; which agency has responsibility.
Second International Bioethics Seminar In Fukui (1992)
The Human Genome Project is an international effort to map and sequence all the human DNA, starting in 1987, especially in USA, and Europe and Japan. The diagnosis, treatment and prevention of incurable genetic diseases through the development of genome mapping and sequencing, as well as the elucidation of the mechanisms of gene expression has been furthered tremendously.
Since the First International Bioethics Seminar 1987, there have been major developments in basic and applied genetic technology, and the genes responsible for specific genetic diseases have now been identified, including the gene and its mutations, causatively linked to cystic fibrosis, muscular dystrophy, thalassemia, hemophilia, neurofibromatosis and fragile X syndrome as well as cancer and coronary heart disease.
This second seminar was held under the auspices of the Study Group of ELSI in HGR., sponsored by Ministry of Education, chaired by Matsubara (34, 35), and of Fukui Medical School (President: Torizuka) and cosponsored by UNESCO, WHO, CIOMS, IAHB, JSHG and JAB. Efforts were made to limit the discussion to those issues concerned with medical genetics and the ELSI arising from the use of medical genetics, which required urgent attention. International moral aspects were emphasized, not concerned so much, with how we human beings, should survive in this rapidly developing technology, but rather concerning the multidisciplinary processes that are required in efforts to resolve some of ethical issues. The seminar was attended by more than 200 participants, including 30 invited Japanese speakers and 12 foreign academicians from 10 countries (USA, UK, Canada, Korea, Thai, China, France Norway, New Zealand and Russia), representing various fields in the natural and social sciences. Members of the general public took part in the discussion on science and ELSI, and enrolled for a public lecture, delivered by a well-known Japanese Science Commentator, Tachibana, for an audience over 200.
The proceedings started with a welcome address by Fujiki, Torizuka (the chairman of the conference), and Kurita (Governor) ,and followed message conveyed by representatives, of Mayor (UNESCO) , Nakajima (WHO) Bankowski (CIOMS) and Bulyzenkov (HDP). An overview of current status of research on the human genome was presented by Matsubara, chaired by Cohen, and then followed 2 papers dealing with human genome research in Japan (Sakaki and Matsuda), chaired by Watanabe, and 2 papers presenting historical background of bioethics in medical genetics (Yesley (24) and Aoki), chaired by Hoshino. After these sessions, presentations illustrating some clinical applications of medical genetics, chaired by Takaku, (Niikawa, Nishijo, Suzumori, Takebe and Nakagome) for genome printing, presymptomatic diagnosis, prenatal and preimplantation diagnosis, genetic counselling and Y chromosome mapping, respectively.) At the evening reception, addresses were delivered by Ohtake (Mayor) and also Fukui (Nobel Laureate).
The next day's programs were extremely full, with presentations on a large range of topics concerning social issues in medical genetics, chaired by Nakamura. There was special focus on the possible misuses of genetics that may occur both intentionally and unintentionally, as society attitudes changes, and on the policy and legal initiatives needed to regulate this technology, (Chizuka, Tachibana, Makino, Fujiyama, Yomemoto, Roberts, Wikler, Billings), for human rights, social conflicts, genetic testing, historical ethical aspects, human genome research, society and genetic medicine, rights of disabled and genetic discrimination, respectively, and needed further discussion due to deficiency of the time.
The next session dealt with the international consensus survey, chaired by Fujiki,with data presented for Thailand (Ratanakul), for India (Verma), for Japanese, and on international attitudes (Macer). Shirai and Kawashima discussed differences between clients responses in Japan and US and commented on the ethical background. Kang and Sun presented perspectives from Korea and China. Unfortunately Verma was unable to present the results of his survey in India, but Fujiki provided comparisons with Japanese data. Fujiki, concluding this international opinion survey supported by a WHO research grant, demonstrated the necessity for public education in order of solve misunderstanding and prejudice in countries under different social and cultural backgrounds.
This session was followed by a panel discussion on ELSI raised on HGR, chaired by Matsunaga, and presented by Ohno, Shinagawa, Osawa, Yoshida and Nawa as information provider, obstetrician, mother-pediatrician-genetic counselor, philosopher and patent-layer, respectively.
The final session dealt with the responsibility of scientists, including some background information on the projected Japanese Branch of Universal Movement of Scientific Responsibility (MURS) chaired by Okamoto, and Melancon reviewed the scientist's responsibility with regard on human genome research, while Gadjusek (Nobel Laureate) pointed out that the new technology was not necessarily cheaper or better technology, and emphasized the interactions between gene and environment. Lastly, closing remarks included messages of Mori, as well as speeches by Wikler and Takebe.
This seminar attempted, by informing both natural and social scientists, to create an "hybridoma" between science and humanity. A number of important conclusions were drawn namely; scientists are sequencing the shared DNA of humanity and have a major responsibility to the consistence with the WHO Goal "Health for All"; bioethicists are multidisciplinary and should contribute their view: the rational discussion of bioethics needs developing in Japan as elsewhere; health means more than just physical and mental well-being and everyone should benefit from genetic technology, without being subject to genetic discrimination. The proceedings were published in both English and Japanese, with the title of Human Genome Research and Society (21) from Eubios Ethics Institute, 1992.
Human Genome Organization Bioethics Workshop (1992)
During Fujiki's stay in Europe for a lecture at the College de France, the discussed with Bernard for the translation of his book "De la Biologic a l'Ethique", with Dausset for MURS Japan. He also participated in the first meeting of the International Bioethics Society in Amsterdam, as well as in the HUGO Bioethics Workshop there, on Oct. 8-10, sponsored by HUGO Europe under the chairmanship of President McKusick and Vice Presidents, Wexler and Pompidou Among the 29 members present were Fluss, Yesley, Matsui, Takebe, Byk, Fujiki, Lhuguenot, Milani-Comparetti, Mikkelsen, Shapiro, representing WHO, DOE, UNESCO, IALES, ELSI HGR, NCCEBS, EINB, EUS, NEC respectively, and several members of HUGO staffs.
HUGO started in 1988, and has 50 members from 35 countries. It has played an important role in technical developments and in ELSI through the coordination of international research, exchange of data and training programs. In 1991, following the proposal at the coordinating committee am the previously described NIH-DOE conference, there was established the HUGO Ethics Committee, as a part of HUGO's activities, to deal with topics such as intelligence property, mouse genetics, human genetic polymorphism, human genome mapping.
McKusick proposed the necessity of discussion, such as 1) usage of genetic information in employment and health insurance 2) privacy and confidentiality of data banks 3) DNA fingerprinting in legal medicine and international exchange, 4) introduction of genetic services and testing for diagnosis and counselling, 5) ethical debate at public and professional levels, and 6) patenting after his plenary session, each representative on his own research activities. Fujiki (22, 23, 29), as chairman of the ELSI Group on HGR in Japan and president of IAHB, presented the outlines of the two International Bioethics Seminars held in Fukui, considered genetic counseling and the need for follow up study. He spoke of the importance and need for international opinion surveys and emphasized the education for professionals and the public.
Today we have new insights, as a result of the development of biotechnology allowing for prenatal diagnosis and selective abortion, which may lead to fundamental changes in the quality life. In our previous survey (28) on gene therapy for thalassemia in humans, engineering a supermouse in animals, and withdrawal of treatment to severely handicapped infants, we explored opinion on the applicability of the new technology. Naturally some agree and some disagree. But there are two types of people who were not certain; one type believes in the progress of sciences but also knows of possible adverse effects, and therefore is not able to answer yes or no. The second type does not have the necessary knowledge and said " don't know". Therefore, we should discuss very careful the moral norms, and base our decisions on the common understanding, both by those who judge developed and old traditional evaluations.
We must devote more of the curriculum to human genetics and bioethics in training medical students and professionals, in order to educate general public. We are not talking here of the scientific reality, we are talking about how people perceive, their misunderstandings and prejudices. It is important to think about these ethical problems, when the general public has been asking these questions. We also tried to survey opinion in students before and after they visited institutions for severely handicapped and aged, following premedical courses on basic human genetics in medical school, as well as in their clinical and postgraduate courses and at clinical genetics conferences. After these visits, agreement for selective abortion in Down's syndrome, as well as disagreement for withholding treatment in more severely handicapped infant, decreased. After discussions with hospital doctors and nurses, the medical students agree on the dignity of the human being and the right to life they want to discuss more bioethics in their society, the same as Weltz and Fletcher (10) discussed the results of the survey of genetic counselors. Fujiki and his groups with Verma in India and Ratanakul in Thailand, proposed international networks of ethical codes at the Second IBSF in Fukui in 1992. He also reported an international opinion survey in India (1212 subjects in 1991, including New Delhi, Chandigarh, Hyderabad. Bombay and Calcutta) and Thailand (500 subjects in 1991 in Bangkok) started in 1991 with the kind support of WHO and ELSI in HGR, and compared the results with Japanese data (624 cases in 1982, Fukui ) who have different religions, cultures and disease patterns. The data are being analyzed by location, sex, age, religion, marital status, education, and occupation.
Workshop On Genetic Engineering And Bioethics In Japanese Society Of Bioethics (1992) And Workshop On Bioethics In Genetic Medicine In Japanese Society Of Human Genetics (1993)
Recently, we have emphasized the bioethical considerations in medical sciences on birth, living and dying of human beings, problems such as cancer notification, heart transplantation and brain death as well as environment and society. During third annual meeting of the Japanese Association of Bioethics in Tokyo in Nov. 1992, we had a workshop on genetic engineering and bioethics, chaired by Furusho (25), with the scientists Chizuka, Onishi, Kida and Fujiki (30), talking on human rights, reproductive choice, prenatal diagnosis and genetic counselling, respectively, the views of Japanese characteristic on bioethical considerations, comparing with Western cultures and religions. Fujiki presented the outlines of genetic counselling of over 3000 cases during the past 35 years, under the kind guidance of the late Profs. Emeritus Komai and Masuda, its follow up was studied, based on following on opinion survey on the handicapped and heredity, which clarified the misunderstandings and prejudices and emphasized the importance of the international opinion survey with the assistance of WHO.
In the following year 1993, the Japan Society of Human Genetics held a workshop on bioethics in medical genetics, chaired by Fujiki, which emphasized the importance of human dignity in the discussion, not only in the areas of clinical and basic medicine, but also in the other areas of the social sciences, as recorded in our IBSF, as well as NIH-DOE, WHO, CIOMS, HUGO and UNESCO workshops. They considered DNA diagnosis in medical genetics, presymptomatic diagnosis, neonatal mass screening, prenatal diagnosis following selective abortion, as well as carrier screening for genetic diseases. There was discussion of the international opinion survey on handicapped, heredity and new technology, by Macer, Hirayama and Osawa, additionally by Fukushima (NHK), Kida and Hasegawa. Fujiki in his summary stressed the need to make every effort to educate the general public and medical professions, as emphasized in MURS. Lastly, the former President of JSHG, Matsunaga proposed well-balanced discussions between medical geneticists in both basic and clinical medicine and social scientists, as well as better use of mass media, and promised the reunion and confirmation at the Third IBSF.
UNESCO International Bioethics Committee First and Second Sessions (1993, 1994)
The Director General of UNESCO, F. Mayor decided to set up the UNESCO International Bioethics Committee (IBC) the invited Mm. Lenoir, member of the Constitutional Committee of the French Republic, as president of this committee to lay down the intellectual framework and practical program, which formed the background for the present committee, in order to reply to ethical marries raised by advances in the life sciences. After preliminary studies by several members during Jan - June 1993, Mm Lenoir prepared a report on the ethical and juridical problems raised by HGR and its applications, and invited 50 members from all over the world, during 15 - 16 Sept. 1993, to the headquarters of UNESCO in Paris. Three Vice Presidents, Ambassador Gros Espiell (Uruguay) and Mborantsuo (Gabon) and Fujiki (Japan) and two rapporteurs Dellagi (France) and Edgar (USA) were elected for 3 years. After the opening address, Mayor underlined the importance of the IBC for the developing countries, who do not always have ethics committees or regulations governing bioethics, Lenoir(31) emphasized the necessity in view of the complexity of the problems involved in bioethics, of working in a spirit of humanity and tolerance in multicultural approaches recalled the triple role of this committee: 1) a forum for the exchange of ideas and experiences, in under was to facilitate comprehension of social, political and economic changes brought about by progress in the biomedical sciences, especially in human genetics; 2) an initiating role in giving practical effect to field work, a view to the better influencing the public and making health and research workers and decision-makers better aware of the opportunities available to them; 3) a summarizing role in identifying values common to human kind, which could bring scientific and biological progress while main raining individual rights and liberties. These researches were basic to the reflection necessary to the elaboration of an international instruments for the protection of human genome.
After addresses from Touboin, (French Ministry of Culture) and Nakajima, (Director General of WHO), President Lenoir invited all members (including Macer, Saito and Fujiki from Japan) to introduce themselves each underlining points or aspects relevant to the work of committee, with the secretarial work of Kutukdjian, (Director of Bioethics Unit). The representatives of CE, OECD, PAHO,ICRO took part in turn in the debate.
The debate then is no longer one of the relation of science and society, but of man's relationship with nature in all its biological diversity, including the nature of man himself. An international ethics for the life sciences and society needs to be developed. The United Nations Commission on Human Rights adopted in March 1993 a resolution regarding the need for international cooperation, in order to ensure that mankind as a whole benefits from the life sciences, and to prevent them from being used for any purpose other than the good of mankind. The resolution invites governments, the specialized agencies and other United Nations bodies, and specifically UNESCO, to inform the Secretary General of the activities being curried out, in order to ensure that the life science develop in a manner that respects of human rights. UNESCO's human genome program is directly in line with that resolution.
After two successive committee bureau meetings in January and June 1994, we had the second session of IBC, UNESCO on Sept. 1994, for proposing the international instrument for protection of human genome. During these committee meetings, we discussed several points described below; concepts of consanguinity in civil law, higher education programs on treatment of cancer, gene therapy, participation of developing countries in scientific progress, property in genetic information, patenting, protection of genetic data and access to research results. Fujiki talked on medical geneticist's responsibility, emphasizing the importance of genetic counseling and its bioethical considerations. The working documents for this session consisted of contributions from the members of the committee. The president proposed that the UNESCO secretariat should prepare a handbook of IBC members and permanent liaison officers. The secretariat (41) prepared and circulated a list of review and publication.
Finally, the President specified the three subject areas to be included in the agenda for next session: 1) genetics of population; demography and development; 2) therapeutic applications, stemming from genetic engineering; 3) genetic screening and testing. Therefore, the committee emphasized the importance of establishing a clearing house at UNESCO on the ethical and juridical aspects of genetic research, to fully informed of the progress of all activities or meetings on bioethics.
Third International Bioethics Seminar In Fukui (1993)
Third IBS meeting was held in Nov. 1993 in Fukui, as a satellite symposium of Human Genome Mapping '93 in Kobe, in which a plenary session on bioethics included a workshop with McKusick, Pompidou, Wexler, Fujiki and Takebe, as well as a poster session. These were 600 presentations with 1200 participants from 24 countries.
This seminar was chaired by Fujiki supported by ELSI Group of HGR in the Ministry of Education, and cosponsored by UNESCO, WHO, HUGO, CIOMS IAHB and Fukui Medical School. It was composed of over 200 participants, including 32 Japanese lecturers and 22 foreign lecturers from 12 countries (USA, France, Korea, UK, Canada, Thailand, China, New Zealand, Russia, India, Israel, and Norway) from biological, basic and clinical medical scientific fields but also from social, ethical, political fields as well as patient-supporting organizations and general public. A main topic was intractable neurological disorders, such as Parkinson disease and schizophrenia, recognized as polygenic diseases, which have genetic susceptibility with environmental risk factors, as well as Huntington's disease, progressive muscular dystrophy, recognized as monogenic diseases. These neurological disorders raised a number of ELSI, because of their intractability.
After the welcome addresses of Torizuka (President of Fukui Medical School), Kurita (Governor), we heard the congratulatory addresses of Inoue (Ministry of Education) Mayor (UNESCO). The first session was on sociology and intractable diseases, chaired by Sobue and McKusick (Kohozuki, Yonemoto, Emi, Ishikawa, Mykitiuk, and Billings) and the second on diagnosis and counseling, chaired by Sugita and Cook-Deegan, (Suzuki, Nonaka, Araki, Imaizumi, and Kanazawa). At a reception party, we had further welcome and congratulatory addresses from Ohtake (Mayor), Matsubara (Vice President of HUGO), Nakajima (Director General of WHO), Bulyzhenkov (HDP, WHO), Bodmer (Former President of HUGO) and Venter (Director of TIGR). On the first day, we have covered topics ranging from Zen to homosexuality, eugenics, and the methodologies and sociologies of research on behavioral genetics.
On second day, sessions on genetic testing and social acceptance, were chaired by Kondo and Nishimi (Yesley, Tranoy, Macer, Kawamura, Nakahara, Hamaguchi) and on prevention and therapy, were chaired by Takaku and Platt (Kinoshita, Ienaga, Nakanishi, Yagi and Wikler). These began with considerations of the social consequences in different countries. The economic aspects were also related to medical care systems that are adopted and the attitudes people have to those suffering from diseases. Later, we discussed possible therapeutic approaches, including gene therapy. Topics including the philosophy of eugenics and examples of nursing experiences with sick patients, were also covered. After these sessions, we had a joint session with the Japanese Branch of the Universal Movement of Scientific Responsibility (MURS Japan) with challenging addresses of both Vice Presidents, Fujisawa and Pompidou, chaired by both Presidents Okamoto and Dausset, and also a public lecture by Okada (Vice President of IUBS), entitled flexibility of living organisms, which the general public was deeply impressed with.
On the third and last day, we had two workshops on the international opinion survey on bioethics, chaired by Verma and Takebe. This project conducted by Fujiki in 1990, with the support of international organizations, such as WHO, UNESCO-IBC, Japan ELSI Group of HGR, and Eubios Ethics Institute, with compared attitudes in different countries around the world; Australia (Macer), China (Lo), India (Verma), Israel (Leavitt), Japan (Hirayama, Shirai, Osawa, Takebe), Korea (Lee), New Zealand (Macer), Russia (Kaushik), Thailand (Ratanakul), UK (Clark) and USA (Bodurtha). Previously complementary survey projects had been under way for several years in Japan, India and Thailand on heredity and the handicapped. The Topics covered various issues of bioethics, biotechnology, medical genetics and attitudes to the environment. In order to develop cross-cultural ethics, we have to examine the reasoning in the general public, although Wertz and Fletcher stated academicians and physician were often too distant from them and their reasoning. Therefore, such a survey was a useful addition to the instruments that were available to examine international bioethics in UNESCO-IBC.
After the first workshop, we had a plenary lecture "ethics, law and new genetics" by Milunsky of Boston University, chaired by Miwa (President of ISHG). (Unfortunately Galjaard in Erasmus University was unable to join but his review was included in our proceedings).
We had a final workshop on genetics and bioethics in a global society, chaired by Fujiki and Macer, both UNESCO-IBC, considering future directions for international research on bioethics in human genome research.(37, 38, 39, 40). We, (Fujiki, Kagawa, Sakamoto, Igarashi, Kuwaki, Morioka and Macer), presented different backgrounds of ethical considerations and delivered the Fukui Statement that reflects much of the spirit of this seminar; such as interdisciplinary considerations, respect for different cultures and their understanding, international standards and guidelines, diversity and universality, ELSI on HGR, genetic screening and therapy, availability of gene therapy, public education etc. Our seminar was closed with Takebe's remarks.
These proceedings were published in both English and Japanese, with the title "Intractable Neurological Disorders, Human Genome Research and Society" from Eubios Ethics Institute, 1994.
WHO Expert Advisory Panel On Human Genetics And Council Of Europe Conference On Ethics And Human Genetics (1993)
Since 1972, HDP of WHO has published the report (WHO Trs 497) on prevention, treatment and rehabilitation, and reported the working group discussion in 1981, 90, and 92, especially for hereditary anemia, prenatal diagnosis, a model strategy of polygenic disease, and the necessity of clinical genetic services.
In Nov. 1993, a WHO scientific group discussion on control of hereditary diseases, chaired by Berg(42), was made up of researchers from nine countries; Verma, Modell, Brambati, Ginter, Knoppers, Williamson and Fujiki with Bankowski and Bellerman, Castella, Dodge, Heidet, Warbel, Mannucci from different associations and Bulyzhenkov and several WHO staff. The meeting focused on current trends in the control of hereditary diseases, and examined genetic approaches to the prevention and control of common non-communicable diseases as well as genetic diseases and assessed the latest scientific evidence on the genetic aspects of two types of diseases, which affected in many ways advances in medical genetics, some of which are already made use in practices. Detailed DNA diagnosis, prenatal diagnosis, screening programs in populations and genetic counselling was reviewed, which raised many ethical questions, whether it will become possible or single to predict diseases that are going to developing a hereditary incurable disease later in life. The ethical issues are linked not with the technology itself but with its proper use. We should ensure that it is not misused and that the dignity of the individual is preserved. Many developing countries do not have the resources to take part in global molecular genetic research, but all should be able to take part in ELSI debates, which could play a very important role in stimulation of international discussion the same as UNESCO and HUGO did. This report was published in Sept. 1994 as Technical Report Series.
On the way back to Japan, Fujiki has participated in the Council of Europe Conference on Ethics and Human Genetics, in Strasbourg in Nov. 1993. This symposium was organized under the authority of the Steering Committee on Bioethics (CDBI) chaired by Berg, it was the Second Symposium of the Council of Europe it was composed of five sessions, genetics at the population level (Motulsky, Hadjiminas, Englezos, Jacquot-David, Vogel), consensus ethics in medical genetics (Mandel, Fletcher, Demmer, Ivanov, Sajervarsen, Serrao, Pompidou), human genome patent ( Elizalde-Perez, Gugerell, Winter, Frocg), confidentiality (Cavoukian, Berg, Barber, Moreau, Michaud, Walter), human rights issues in research in medical genetics (Romeo-Casabona, Wodmer, Andre, Oberfrank, Poledge, Puglisi), and finally, balance between people's rights and public demands (Kokkonen, Traitmann, Kennedy, Lenoir, Bernart, Czeizel, Zielinska), with an introduction, panel discussion and debate. There were over 100 participants, including my old friends, (Nudeshima, Saito, Fluss, Kutukdjian, Bulyzhenkov, Norio, Jacoutaria, Knoppers, Boue, Byk, Lhugenot, Mauron) and the 3 days conference finished with the concluding remarks of Furger, Quatana-Trias and Palacios and CDBI proposal for future works.
In conclusion, genetic research and its applications are seen as a new tremendous but unknown high risk activity, consequently these may be restrictive attitudes to research as well as practices in human genetics, sometimes based on inadequate information. This symposium aimed at informing, clarifying the debate and trying to define a balance between freedom and regulation.
Indo-Japanese Workshop On DNA Diagnosis (1994)
During a project site visit to the Department of Medical Genetics, Sanjay-Gandy Postgraduate Institute of Medical Sciences in Lucknow, India in 1992, on behalf of the Japan International Cooperative Agency Program, I have discussed with S.S. Agarwal, and organized this workshop for mutual communication between these countries. This was after the publication of the Proceedings of the First International Symposium on Genetics, Health and Diseases, chaired by Jai Rup Singh in the Human Genetics Centre, Guru Nanak Dev University in Amritsar in 1987, which I have reported (44).
This workshop (45) was aimed to train young Indian scientists on the methodology of DNA diagnosis, and also established communication between Indian and Japanese human and molecular geneticists for joint efforts in human genome research under the auspices of the JICA-SGPGIMS Technical Cooperative Program (Director: Kojima) as well as the HUGO Pacific Human Genome Research Program (Director: Matsubara), sponsored by the Ministry of Education, and the Japanese and Indian Societies of Human Genetics (Directors: Miwa and Murey) with great success. Japanese scientists were Fujiki (Program Director and Ethics), Niikawa (chromosome dissection), Hattori (hemoglobinpathies), Kita (malaria), Kosjima (hemophilia), Taniwaki (FISH technique) who learned trends of genetics in India from 17 senior Indian scientists. Over 40 young Indian scientists have trained well, developing wonderful friendships. Immediately after this workshop in Lecknow, in January 1994, the All India Institute of Medical Sciences conducted the Indo-Japanese Symposium on Molecular Genetics and Medicine (46) in New Delhi, organized by Verma and Fujiki for over 70 Indian scientists, who could not attend the Lucknow Workshop.
This first Indo-Japanese International DNA Workshop has made a significant contribution to training and education of participants, and the later was certified at the time of the Third International Symposium on Genetics, Health and Disease in Amritsar in December 1995, where I have noticed many research presentations that had roots in the training workshop. Both meetings were reported at the UNESCO-IBC bureau meeting, receiving a high evaluation as the nucleus of further developments of an Indo-Japanese Network on Medical Genetics
International Congress Of Internal Medicine (1994)
Villardell, President of CIOMS, has organized the Session on ethics in medicine at the International Congress Of Internal Medicine in Budapest, September 1994. In this session basic ethical principles such as beneficence, do no harm, autonomy, confidentiality, Justice, rationing medicine, ethical committees, were discussed. Fujiki has talked about the responsibility of medical geneticists (43), and the principles and history of genetic counseling. He also discussed bioethics and medical genetics, the Fukui International Bioethics Seminars and the UNESCO International Bioethics Committee, and called for more inclusion of bioethics and human genetic in the medical and postgraduate curriculum. The idea of scientific responsibility was also discussed together with the establishment of MURS Japan in response to MURS France proposed by Dausset.
Translation of "de la Biologic a l'Ethique" (1994)
Fujiki and Nakazawa published the translation of J. Bernard's book "De la Biologie a l'Ethique " (32) with the cooperation of 4 young Japanese Students, in 1994 through Igaku Shoin. My tutor, Bernard was the former President of the French National Academy of Sciences, Member of Academia Francaise, as well as former President of the National Consultative Committee on Ethics in Life Sciences of French Republic.
This book reviewed all the problems of clarification of life sciences, beginning of life, recombinant genetic engineering, and its application to prenatal diagnosis, genetic counselling, gene therapy and reproductive medicine; quality and the end of life, such as euthanasia, organ transplantation, brain death, cancer notification, environmental resources and its rights, journalism, it summed up the problems faced during his presidency of the national committee, showing the heavy responsibility in this same as the present study group in France. It is in time for the coming 21st century bring of possibilities of reproductive, gene or brain modifications. In this time of not only new difficult situations in the doctor-patient relationship but also balance between science technology and dignity of humanity, Bernard clarified the progress of bioethics, in the traditional civilized society, and also emphasized the need privacy as well as possibilities of computer utilization from the standpoints of epidemiologists.
This book expressed not Anglosaxon arraides and arguments or Japanese traditional melancholy, but a cocktail of rationalism and lyricism specific for French scientists with multidisciplinary view points, which started the original concepts of bioethics in Japan at the First IBSF and now has grown year by year as shown by this translated book.
International Symposium on Human Gene Therapy (1995)
Yagi, Director of the Institute for Applied Biochemistry, organized the International Symposium On Human Gene Therapy in Nagoya and Inuyama in September 1995, sponsored by the Pharmaceutical Manufacturers Associations of Osaka and Tokyo, with the support of Suzuken Memorial Foundation and under the auspices of CIOMS, IUBMB, Japan Society of Gene Therapy. In the roundtable on ethical issues, Fujiki talked on UNESCO IBC activities in human gene therapy, conveying a message from Mme Lenoir, and also discussing the international opinion surveys. He emphasized the importance of consideration of bioethics in medical genetics debates, and public education.
Domestic Scientific Meetings on Medical Genetics (1994-1995)
The first and second meeting of the Japanese Society of Gene Diagnosis were held in Kyoto and Tokyo in September 1994 and 1995, by Kawai and Mori of the Laboratory of Medicine in Jiji and Kyoto Universities. There were increasing numbers of participants. The 1994 meeting had only three educational and plenary lectures on recent trends in gene diagnosis, and a panel discussion on been diagnosis and treatment from various clinical and practical viewpoints. The 1995 meeting saw 65 topics in many basic and clinical fields, especially on the genetic basis of common diseases and cancers, the present dated of gene diagnosis, gene testing and screening, infectious disease diagnosis, and transgenic experiments, and the control of genetic information.
Otherwise, the Japan Society of Gene Therapy was organized by Takaku, Director of the International Medical Center of Japan, in Tokyo in May 1995, which included 25 oral and 47 poster sessions covering genetic transfer techniques, infectious diseases and vascular diseases, cancer, with three plenary lectures.
Since 1990, development of gene therapy has started in the USA and Europe for cancer, immunodeficiency and fatal genetic diseases, for which the NIH Subcommittee on Gene Therapy (9) has already approved over 100 protocols. However, the situation in Japan has still immature recently the Committee on Health Sciences in Ministry of Health and Welfare (36) has approved the guidelines for clinical research on gene therapy, in order to clarify the scientific justification of the proposal, procedures for bioethical considerations on selection of the subjects, informed consent, and the function of advisory committee, under the chairmanship of the Ministry of Health and Welfare. The Ministry of Education also approved the same procedure. Therefore, this association can make important contributions not only in practical but also scientific procedures, in order to communicate basic research, exchange information, examine practical protocols as well as ethical discussion for broad consensus including the general public.
The Japan Society of Human Genetics established the Subcommittee on the Network System of Genetic Counselling in 1974, and published a Guidebook on Genetic Counseling in 1982, under the editorship of the Study Group on Birth Defects, sponsored by the Ministry of Health and Welfare. This subcommittee emphasized the importance of clinical applications of medical genetic services.
Recently, following the tremendous progress of medical genetics, especially on HGR, and bioethical considerations, a newly established Committee on Genetic Counselling and Prenatal Diagnosis, has delivered new guidelines, in order to avoid genetic discrimination and protect fundamental human rights of patients and their families receiving medical care and support. It has the same basic continuing concepts as the "Guidebook on Genetic Counselling" including informed consent, confidentiality, self-decision making, truth telling and quality control of techniques, under the well-trained medical geneticist with sufficient medical genetic knowledge and technology, especially on prenatal diagnosis and its technology assessment.
Recently in 1995, the Human Genome Projects (50) entered into the second stage and emphasized 1) large scale sequencing of the human genome, including the construction of high resolution physical maps, 2) functional analysis of the genome, including cDNA analysis and the analysis of the genome, including cDNA analysis and the analysis of model organisms genomes, and 3) development of new technologies for genome analysis including computer technology for gene analysis, under the new directorship of Sakaki in Tokyo improvement, with the second five year project for human genome analysis ( 1996-2000), which will continue the ELSI debates in the ELSI Group directed by Nakamura and Kato. Another ELSI study in the Japan Medical Association directed by Kato in Seijo Gakuen, has published a monograph on ELSI in human genome research in 1996 (51).
Establishment of MURS Japan (1993)
Of the occasion of Fujiki's invited lecture on "Bioethics of genetic counselling" at the College de France in 1985, President of MURS France, Dausset (11) contacted with Okamoto, Director of the International Institute of Advanced study, for the expansion of Universal Movement of Scientific Responsibility (MURS) activities to Japan. After that time, Fujiki has invited Dausset and Gajdusek, both Nobel Laureates, to the Second IBSF, but Dausset sent Melancon, Vice President of MURS Canada. Therefore, we had two Nobel Laureates, Gajdusek in USA and Fukui in Japan, at this joint session chaired by Okamoto, in order to emphasize the importance of coupling of sciences and ethics.
After this preliminary meeting in the Second IBSF, Okamoto organized the starting committee of MURS Japan, with such prominent scientists as Kondo, Fujisawa, Ebashi, Mori, Yanase and Oda, with secretary general Fujiki (15), and officially started MURS Japan at the time of Joint Session in Third IBSF, with Fujisawa and Pompidou's lectures, under the chairmanship of Okamoto and Dausset, with 150 participants, including 60 members of this association.
Students of Fukui Medical School has had their own plans for a panel discussion on terminal care (Miyabo, Miyagawa, Tokuda, Smith, Yoshioka, Kanehara, Okazaki), at the time of the University Festival on Oct. 1992, under the kind suggestion of Bernard and Fujiki, and published its proceedings in both English and Japanese and received high evaluations.
Anyhow, MURS is the movement, with no political, ethical and religious links, to propose an additional article to the Universal Declaration of Human Rights of "our scientific knowledge should be used only to promote the human dignity, and preserve the integrity of scientific knowledge and to address the universal consciences and obtain the solemn declaration endorsed by the most competent scientific bodies and in particular by the scientific academies as same as UNESCO IBC proposed.
Second South - North Human Genome Conference (1994)
UNESCO with the Chinese National Commission for UNESCO, directed by Wei of Peking University has organized the second South - North Human Genome Conference in Beijing in December 1994, under the chairmanship of Chen and Wei. Fujiki has also been invited to see on medical genetic services in human genome research at the closing ceremony. He discussed the international opinion survey and trinucleotide repeat mutations in intractable neurological diseases, and emphasized that the DNA differences of every person vary greatly as can be seen in the human genome diversity project, which means we should preserve the dignity of mankind.
East Asian Conference on Bioethics (1995)
EACB'95 was organized under the presidency of Kao, Chinese Medical Association, Okamoto, Director, International Institute of Advanced Studies, Qiu, Chinese Academy of Social Sciences, and Sakamoto, Nihon University in November 1995 in Beijing. Fujiki was invited to speak on medical genetic services and bioethics in a session on bioethics and genetics. He emphasized the effective measures of genetic counseling and talked about over 3500 cases and the follow-up study, followed by further domestic and international opinion surveys. We, with MURS and UNESCO IBC have agreed that our scientific knowledge should be used only to promote human dignity and preserve the integrity of scientific knowledge. I delivered the congratulatory message of Madame Lenoir.
Third International Symposium on Genetics, Health and Diseases (1995)
Jai Rup Singh, Director, Human Genetic Center, Guru Nanak Dev University in Amritsar, invited Fujiki to chair the roundtable discussion on ethics and genetic of the Third International Symposium on Genetics, Health and Diseases in Amritsar, India, in December 1995. Fujiki delivered the congratulatory message of Mme Lenoir And presented a talk on bioethics in medical genetics, participated in the roundtable discussion on international collaboration in human genetics, discussing necessary procedures for collaboration. This included the planned Asian Bioethics Conference sponsored by UNESCO, reflection on the previous DNA diagnosis Workshop organized by JICA. Fujiki's colleagues, Hashimoto and Nakagawa in TOYOBO Gene Analysis Laboratory and Fukui Medical School talked on trinucleotide repeat mutations in intractable neurological diseases in the session on Molecular Genetic Diseases which has been most effective for human genetic studies in India. Further collaborative projects between India and Japan were arranged.
Fujiki was also very pleased to know how much our previous JICA workshop on DNA diagnosis in Lecknow has influenced today's DNA studies in India so effectively, that means this symposium was almost like a reunion of the JICA Workshop participants.
UNESCO International Bioethics Committee Third Session (1995)
The Third Session of the IBC was held in September 1995 and considered reports on genetic counselling, ethics and brain research and the human genome diversity project and population genetics, and teaching of bioethics in South America. Fujiki was a member of the subcommittee on population genetics where he talked about genetic epidemiology. The annual report was also presented. The Legal Commission presented a revised draft of the Declaration on the Protection of the Human genome for the comments by the IBC members who have consulted world-wide with experts from many organizations, research centers and law schools. It is hoped to have the Declaration approved by UN member states at the time of the 50th anniversary of the Declaration of Human Rights in 1998.
MURS Japan / UNESCO IBC Joint Seminars on the Protection of the Human Genome (1995)
As Vice President of UNESCO IBC, I have organized the above seminars in Tokyo, Nagoya, Fukui and Kyoto, welcoming Mme Lenoir, the President of the UNESCO IBC, who gave plenary lectures on "UNESCO and bioethics" and discussed the issues with various scientists under the auspices of the Science and technology section of the French embassy, the UNESCO IBC, the International Institute for Advanced Studies, and Fukui Medical School. There were 50, 20, 40 and 40 participants, respectively, and there were plenary lectures by Madame Lenoir under the chancellors Ebashi, Yagi, Fujiki and Okamoto, moderators, Kuroda, Katsumata, Sudo and Nishijima, with panel discussions in Tokyo (Takaku, Sakanoue, Nakamura and Sakamoto), Fukui (Davies, Bourene, Aussarge, Singh and Macer) and Kyoto (Hanihara, Omoto, Fujita, Mori and Yazaki), during 16-21 October, 1995.
Mme Lenoir emphasized 1) a forum for exchange of ideas and experiences, 2) an initiating role in giving practical effects to field work with a view to better informing the public by health and research workers and decision-makers, and 3) identifying common values of mankind. This will bring about scientific and biological progress and clarify a future forum for bioethics in Asian countries in 1997 in japan, as well as further exchange conferences between Japan and France.
These reports and discussions were published in April 1996 in English and Japanese from Eubios Ethics Institute (Director: Macer) with the editors, Okamoto, Fujiki and Macer (58). This proceedings will play an important role as the fourth milestone of the IBSF and for further development of bioethics in medical genetics in japan and Asian countries.
I, as Vice President of UNESCO-IBC and Former Chairman of ELSI Study Group of Human Genome Research, have made this overview of this subject in Japan, and proposed the whole scientific responsibility for the human species and their environments, the same as MURS. Nobody could imagine the fear of nuclear contamination, when famous physicists discovered nuclear reaction, which at that time was thought to be wonderful and useful for mankind. We should develop multidisciplinary discussions on human dignity, as same as did IBSF combining wide areas of biology and medicine, with other areas of philosophy, sociology, psychology, law, economics as well as general public.
Medical genetics is the science itself for the study of individuality and diversity, resulting from the growing number of DNA sequences of all persons. It has important roles in the evolutionary processes of human species, respecting human dignity. If someone wanted to standardize some combinations of genotypes, which are regarded at the present time as the most suitable, the human species would disappear before 100 years. Thus, our own great diversity must be respected, in order to preserve the dignity of mankind.
In order to educate the general public in their understanding of individual and social problems, we should remove the boundaries between the developed and developing countries, the professional and non-professional fields, and give more time in the medical and postgraduate curriculum for medical genetic including bioethics and the scientist's responsibility in our own society.
Our scientific knowledge should be used only to promote human dignity and preserve the integrity and the future of mankind, as proposed at UNESCO-IBC.
I close this review with the message of Spinoza's Ethica: The souls of men are not conquered by arms but only by love and generosity.
Thus study projects have been supported by research and travel grants from ELSI Working Group of Human Genome Research in Ministry of Education (1991-3) , International Bioethics Committee in UNESCO (1992-5) and Hereditary Diseases Program in WHO (1992-5) as well as several private foundations.
Our previous research projects on genetic counseling, its follow up study, consanguinity study in isolated communities as well as domestic and international opinion survey study, were partly supported by research grants from the Ministry of Health & Welfare (1973-82), Ministry of Education (1973-6, 1982-3), with the cooperative staff in Kyoto Prefectural University of Medicine, Institute of Developmental Research and Fukui Medical School, for the past 35 years, and were reported at our four IBSF (1987, 1992, 1993, 1995) IAHB-JSHG Joint Symposium (1990) CIOMS Conference (1990) as well as NIH-DOE Conference (1989), HUGO Ethics Workshop (1990) , WHO Working Group Discussion (1992), Indo-Japanese Workshop (1991) and IBC in UNESCO (1993-7), described in this overview, and published respectively. I appreciate the editorial assistance of Dr Darryl Macer with this paper.
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38. Herdman R.C. (Ed) Biomedical Ethics in US Public Policy , Washington, D.C.US CDOE, 1993.
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41. Kutukdjian, G:PARE Data Bank of Bioethics Institute. Paris, UNESCO Social & Human Science Documentation Center,1994.
42. Berg P., Fujiki N. et al(Eds): Control of Hereditary Diseases. WHO TRS, Geneva WHO 1994.
43. Fujiki N. Medical geneticist's responsibility. Budapest, Proceeding of Intern. Congr. Int. Med., 1994; and Proc. UNESCO IBC 2 (1995), 15-20.
44. Singh, Jai Ruj (Ed) Human Genetics, Health, Disease Perspectives. ESS Ess 300pp., 1994.
45. Agarwall, SS. & Fujiki, N. (Ed.) DNA Diagnosis. JICA and SGPGIMS, 1994.
46. Verma, IC. Fujiki, N (Ed.) Molecular Genetics and Medicine. AIIMS and JICA. 1994.
47. Mori, T. & Narizawa, K. (Ed.) Panel Discussion on Gene Diagnosis (I) Jap. J. Gene Diagnosis 1: 50-95, 1994 (J).
48. Kawai, T. & Muramatsu, M. (Ed.), Panel Discussion on Gene Diagnsois (II) Jap. J. Gene Diagnosis 2: 120-130, 1995 (J).
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50. Sakaki, Y. Human Genome Project in Jaspan. The Second Five Years. Genome Digest 2 (4), 5-6, 1995.
51. Kato, I. & Takaku, F. (Ed.) ELSI in Human Genome Research, Nihon Hyoron Sha, 1996 (J).
52. Okazaki, S. (Ed.) Panel Discussion on Terminal Care. Pamphlet on Univewrsity Festival, p.20, 1994.
53. Grisolia, S. (Ed.) UNESCO South-North Genome Conference in China. Genome Digest 2(4), 8-9, 1995.
54. East Asian Conference on Bioethics, abstracts in Eubios Journal of Asian and International Bioethics 6, 11-22, 1995.
55. Singh, Jai Rup (Ed.) Third International Symposium on Genetics, Health and Disease. Proceedings ISGHD 3, 40pp., 1995.
56. Fujiki, N. Genetic epidemiology. Proc. UNESCO IBC 3 (1995), 20-25.
57. Executive Committee: The Human Genome Diversity Project. Genome Analysis Newsletter 5 (2), 29-33, 1995.
58. Okamoto, M., Fujiki, N. & Macer, DRJ. (Eds.) Protection of the Human Genome and Scientific Responsibility , MURS 1, Tsukuba, Eubios Ethics Inst. 1996.
Fujiki - Bibliography 20