Editors: Norio Fujiki, M.D. & Darryl R.J. Macer, Ph.D.
Professor, Program in Medical Ethics, University of Wisconsin Medical School, USA
One, which I think might strike any outside observer of our meeting in the last two days, is that we have now, and will continue to have, a problem in discussing the ethical issues arising from the human genome project, which could be put under the heading of the "two cultures" problem. And here I'm using a phrase from the British author Snow who published an essay called the Two Cultures many years ago. Snow's complaint was that, at least in British academic life, there was a widening gap between the natural sciences and the humanities. Each side was losing something precious, because each side failed to incorporate the contribution of the other side. I think that, similarly in the discussion of the ethical aspects of the Human Genome Project, we'll face this problem.
Many of the people who come from backgrounds in bioethics and law, such as myself, are almost completely ignorant of the basic science involved, as well as the technology involved in the applications. And while it may be possible for people with backgrounds in bioethics and law to make some headway in discussing the logic of arguments or the applicability of certain legal concepts, the lack of a firm grounding in the science makes it a problem to ensure that the discussions are relevant to any of the developments that will actually take place. At the same time, those who are involved in the sciences and who have the requisite scientific knowledge may find themselves uncomfortable in talking about ethical issues, and therefore tend to focus very narrowly on rather straightforwardly scientific questions. Some may have a belief that the ethical and legal problems are simpler than they actually are, and that they can be solved by just anyone who has the right kind of sentiments. Needless to say the perspectives of both those involved in bioethics and law on the one hand, and those in science on the other, are necessary for any progress. Almost never are these two bodies of knowledge joined together in the bodies of the same person. Therefore, no matter how difficult it is for those of us involved in this effort to speak across this gap between the two cultures, it is essential that we try to do so.
Secondly, another thing quite evident from the proceedings, are the profound differences in our perspectives in these issues that correspond to different national identities, ethnic identities and religious identities. These moreover, criss-cross we heard a debate yesterday between Japanese, over the relevance of a Western orientation in their value system, and today we heard from a number of people from different countries who have quite different religious, ethnic and national perspectives on these questions.
To some of you, you may feel that it is a welcome thing that we have such diversity and each nation should be left to work these problems out for themselves. But there is a problem with this view: the social consequences of the scientific advances in the Human Genome Project will not respect boundaries, and developments that occur in one place will have profound social consequences in other places. It may not be possible to have a purely local solution, or national solution, to any of these problems, for that reason.
The third obstacle which I'd like to point to as a continuing issue for us to have in mind as we continue these discussions, is the function that symposia like these have in the social process that leads to resolution of these difficult issues. Those of us who are here, who have applied our energies to working out solutions to the problems which were set for us by the organisers of this symposium, prefer to suppose that we are the advance guard; we are if not the elite, at least the group that is more informed than the rest of society, and we are trying to solve the problems raised by these problems raised by the Human Genome Project, prespectively, before they become actual social problems. But I should report that there is another point of view, which I hear regularly from my colleagues, some of you may have heard the same opinion. This is a fairly widespread cynicism about what the point of all this discussion of the ethical problems of human genome research is really for. We heard earlier that Dr. James Watson promised 3% of the enormous budget given over to the Human Genome Project in the USA would be spent on discussion of the ELSI issues raised by genome research. All of which sounds to a bioethicist, like myself, to be a wonderfully noble and advanced idea. To my cynical friends, however, what it means is that people like myself are only too willing to sell themselves to people like Dr Watson and his colleagues to be used for pacification. To have symposia like those taking place all over the USA, funded in part by programs controlled by people like Dr Yesley here, which discuss these problems, give the illusion, so my cynical friends say, that the problems are all being handled by the experts and that the public instead of joining in and organising themselves to protect their interests, can rest assured that people who call themselves ethicists will have these problems solved by the time that the research is done. According to my cynical friends, the provision of large amounts of money for discussion of ethical problems is not really an attempt to solve the problems, or to deal with the very real conflicts of interests that arise in the wake of human genome research, but rather to create an illusion. Enormous amount of discussion generated by the use of these funds from ELSI (ethical, legal, social issue) projects will, in the cynical interpretation, substitute for actual substantive solutions. I don't share this cynical viewpoint, and I doubt that many of us here do, or else we wouldn't be here, but I think that the fact that there is this widespread cynicism, at least among scholars in the USA, imposes a responsibility on us. Which is, first of all, to ensure that our own discussion of ethical and social issues of human genome research are genuinely independent, and secondly that our forums be as substantive as possible and not consist merely of more and more talk.
Finally, I will enter a plea that the discussions continue to be as international as this discussion has been. One of the most fascinating aspects of these two very interesting days for me, personally, has been to see the tremendous range of opinion from people of different nationalities. I would like to speak briefly of two possible forums for continued international discussion. The first is a possibility that has been moved at least some distance by the conference held in the NIH in the USA in June 1991, "Human Genome Research in an Interdependent World". The conference that was held at the NIH was specifically addressed to the question of whether there were specific aspects of the ELSI issues which were inherently international, that is questions that could not be handled on a national, country to country basis, but would have to be handled on the basis of international accords or treaties. Now at that time, there was some speculation that the time was right for some kind of actual treaty between nations, one that would govern either the flow of information, or the use of the identifying data that the human genome project was alleged to make possible in forensic and police work, or in any number of other issues. At the time of the NIH conference it quickly became apparent that any talk of an international agreement was premature, because the discussion had simply not advanced far enough to allow the kind of clarity that would permit the drafting of something that could act as the provisions of such a treaty. Therefore at the NIH conference the call was made for a call for an international coordinating committee, which would then assemble task forces, whose membership would come from countries from all over the world, with the kinds of legal and scientific and bioethical expertise needed to draft suggestions for international agreements, if they turned out to be necessary, in any of a number of fields. This recommendation was presented to HUGO, the International Human Genome Organisation, and there is now some sign that HUGO may give rise to a committee of this sort under the joint direction of Dr Nancy Wexler and Mr Pompidou. It is my personal hope that if such a committee is established within HUGO it take on the international investigative, scholarly, and coordinating functions that have been recommended to it by many of us here who attended the NIH conference.
Finally, I'd like to urge that as many of you who are here as possible, participate in the forthcoming Inaugural World Congress on Bioethics, organised by the International Association of Bioethics. The formation of the International Association of Bioethics was motivated precisely by the desire to have continued discussions, not only of ethical issues of the Human Genome Project, but that the discussion of all bioethical issues be thoroughly and genuinely international. Prof. Hoshino is on the scientific programme committee of the forthcoming congress, to be held in Amsterdam, October 5-7, 1992. My experience here in Fukui has convinced me, if I didn't know already, that the vigorous involvement of large numbers of Japanese bioethicists will add substantially to the success to the outcome of this meeting. On behalf of the foreign visitors, I express thanks to Prof. Fujiki for this opportunity to participate and to see how much can be gained by a thoroughly international and multicultural discussion of these issues.
Professor, Dept. of Expt. Radiology, Faculty of Medicine, Kyoto University, JAPAN
Now I would like to read the closing message of Dr. Wataru Mori for closing remarks, which I will present on behalf of him. Prof. Mori was a member of the Japanese Prime Minister's Ad Hoc committee for Brain Death, and he chairs the Human Genome Project in the National Council for Science and Technology of the prime Minister's Office. He was also the head of the ten member delegation from Japan to the NIH conference last year, referred to by Prof. Wikler. He emphasizes three points:
Mori (message): This is the Second Bioethics Seminar in Fukui, one of the few conferences at which bioethics is made the subject. Although the necessity of bioethics is recognised by people, there are not so many opportunities to have such a seminar. Therefore there is much significance in this seminar.
This is a seminar in which the Human Genome Project was directly involved, where bioethics was mainly discussed with special focus on the issues of human genetics and human genome research.
The contents of the seminar has been excellent and wonderful. There were many distinguished scholars who attended and presented wonderful speeches.
Takebe: As to these issues I totally agree with Prof. Mori. Like in the USA, in Japan, 1% of the funds should be dedicated to the research and activities related to bioethics, and this is part of the factor which has made it possible to have this forum. It signifies that there is increasing awareness among people of the importance of these issues.
As Prof. Wikler and others mentioned, we have already gone past the age of saying we should do this and that, we should now enter the era of how we should do this. In medication and clinical activities we have to make continuous efforts to deepen our understanding. How can we cooperate to these upcoming research activities, which is actually the assignment that is on all of our shoulders. This afternoon there was an importance stressed about the increasing awareness of people about this important scientific issue. Some prejudice and ignorance still exists in society which should be eradicated by the efforts made by scientists and society in total. That recognition is the culmination of the efforts, and a very important accomplishment of the discussions.
Unfortunately there are not so many molecular biologists still staying here. In Japan the Human Genome Project is often discussed in the framework of molecular biological activities. At least it is partially existing in the academic community, therefore I hope that this seminar will give some momentum for changing people's perception, and I really wished that there were more molecular biologists who stayed here to listen to the discussions this afternoon. We will make an effort that the society as a whole will be enlightened to recognise the importance.
There were representatives from Asian regions, like South Korea, China, Thailand, who engaged in very candid and frank discussion on these issues. From the point of view of international coordination, this was really epoch-making. The peoples in Asian countries account for over half of the world population, in this sense an Asian contribution is becoming even more important in science, technology, culture and religion, where there used to be more orientation to Western values and cultures. Now there could be some turning point where we pay more attention to the ideologies, ideas, cultures and religions in the Asian world, and these will be more respected. Considering these aspects, perhaps we are trying to motivate ourselves to pay more attention to those aspects in this part of the world, we also need to have some reflection of our own attitudes in Japan because we may have paid more attention to the Western world before.
Now on behalf of the organising committee of this seminar, before closing this seminar, I would like to extend my heartful thanks and appreciation to all the members and parties concerned who have made a contribution to the organisation. Thank you for the excellent and very impressive presentations and discussions, and I thank the supporting staff for preparation and success of the seminar, and also to the simultaneous translators who had a very hard task to translate the difficult and multidisciplinary presentations and discussion. I am sure that without their effort this seminar could not have turned out such a success. Finally I thank the local organisers, and thanks to Prof. Torizuka and, and Governor of Fukui Prefecture and the Mayor of Fukui City, and supporting organisations such as UNESCO, WHO, HUGO, and others. Above all thanks to Prof. Fujiki.
Fujiki: We will soon be clearing the auditorium for an open public lecture by Mr. Tachibana. I would just like to extend a few words of hearty gratitude to all the people who have gathered here, despite the busy season at the end of the fiscal year. As Prof. Wikler mentioned, we would like to view just a small portion of the meetings at the NIH. Prof. Matsubara talked about the 1% of his budget, and we are very grateful to his collaboration. Many thanks have already been expressed by Prof. Takebe, so I do not need to repeat those. We thank the Convention Bureau, Stadio Nippo, and SIMUL interpreters, and the students and staff members in my research group, young ladies and doctors, I would like to thank all of these people for their collaboration and support.
As someone mentioned, this is not the end but this is the starting point. I hope in some case we can hold another meeting like this, next time perhaps we should not cover this many different topics. We had many speakers and we had to ask the speakers to rush like in the rush hour in Tokyo, and I'd like to apologise for the inconvenience caused. In the next meeting perhaps we should concentrate more on a specific number of topics. On behalf of the other members of the organising committee this concludes my closing remarks.