pp. 296-298 in Intractable Neurological Disorders, Human Genome Research and Society. Proceedings of the Third International Bioethics Seminar in Fukui, 19-21 November, 1993.

Editors: Norio Fujiki, M.D. & Darryl R.J. Macer, Ph.D.

Copyright 1994, Eubios Ethics Institute All commercial rights reserved. This publication may be reproduced for limited educational or academic use, however please enquire with Eubios Ethics Institute.

The future of international bioethics

Darryl Macer
Foreign Professor, Institute of Biological Sciences, University of Tsukuba, JAPAN;
Director, Eubios Ethics Institute, Christchurch, NEW ZEALAND & Tsukuba, JAPAN.

This session focused on the future of international bioethics in genetics research, and has covered a number of topics like the whole seminar. At first we heard the paper by a molecular biologist, Prof. Kagawa, titled "Genetic diseases and freedom of faith in life". In his summary he began with the words, "very few molecular biologists want to discuss bioethics". He is one of the few who does, there are a few others of us at this seminar also. The basic premise of his paper was that we should have "freedom of faith in life", in other words freedom of expression. The freedom of expression has its roots in human rights and constitutions, which have their roots in religion, especially in protestant Christianity. Even the Japanese constitution, is based on the US Constitution, which was based on a protestant theology. The idea being that all human beings are made in the image of God, therefore they have freedom of faith and choice. In medical terms we could call this informed choice.

We should distinguish informed choice from informed consent. Consent implies agreement, in a relationship where the doctor is above the patient. Informed consent as a concept is in the stage of being accepted as an idea in Japan, and is gradually being introduced to practice. Significant changes are beginning in the last few years, particularly in the growing social consensus seen in the media, television talk shows and magazines, and newspapers. The concept of informed choice can be expected to continue this transition. Implicit in the idea of informed choice is a relationship where the patient is above the doctor. This will shock the doctors in many countries, but I would predict the social transition of patient rights will move the relationship to this situation. The media, as represented by Mr Igarashi of NHK has an integral part in this. Perhaps the main deficit in the current media in Japan, which is true of some other countries, is the lack of drama programs that include positive role models for people exercising informed choice in medicine, or for handicapped people. Considering that intractable neurological disorders afflict so many people's lives, and popular drama programs are watched by more people than most documentaries, even such excellent balanced documentaries as we have seen recently in Japan, they are an important niche to explore.

The results we heard this morning provide data on which we can review our philosophical ideas. We should continue to develop our thinking, and use data from many fields. We should not limit ourselves to our own speciality, in fact in this seminar we have a number of people who have multiple specialities, and we have a majority of people who do not limit themselves to some arbitrary field. I think the degree Ph.D. - Doctor of philosophy, is given for all disciplines, all are philosophy. In another way all are science; natural science and social science. Bioethics is however, not just an academic discipline, as we have heard. And in fact, when it becomes only an academic discipline it is no longer bioethics, but applied philosophy, as Dr Morioka said. The bioethics discussion must not be centred on the academic world, rather it must come from the people. We can use the phrase from genetics, it must be a "Bottom-up" approach, not a "Top-down" approach. The bioethics movement in the USA has a number of roots, but undoubtedly the speed at which it transformed thinking in medical practice and environmental policy was dependent upon the grassroots movement of civil and political rights.

Who is the voice of international bioethics? We need to have not only the public voice, but also international discussion. At the moment, despite the formalities of politeness, and despite the good intentions and aims of different groups, there are some problems in the coordination of the activities of different international bioethics bodies. Let us hope that the activities of the International Association of Bioethics, the International Association of Science, Law and Ethics, the UNESCO Bioethics Committee, the HUGO ELSI Committee, the WHO group, CIOMS, and other more regional attempts such as the Council of Europe, can coordinate their activities more. Various networks have been established, such as the networks of the International Association of Bioethics, and the Eubios Ethics Institute Newsletter network. We need to develop these methods of information sharing, and internationalise our thinking.

We need to build a bioethics which includes the views of all people's of the world. Not only from the United States (we should not say American, as the USA is only one country of the Americas), neither only European. Also Europe itself is extremely diverse. We need to add Asian and African perspectives. However, the arguments given by Prof. Sakamoto for the foundations of western bioethics ignore the philosophical and religious traditions, especially Christian, behind both science and bioethical ideas. The debate about public health responsibilities is not one that began this century, rather several centuries ago. The animal welfare movement was started at least a century ago. The concept of equal rights can be traced back much earlier than the rise of humanism. The same concepts he mentioned as especially Asian, such as harmony, are found also in Western thought, both today and in the past. Oneness with all of creation is seen in the thoughts of Saint Francis of Assissi, to mention just one example. Open questions about the image of "life" or "nature" were included in the International Bioethics Survey, extending the earlier research of Dr Morioka in his questions of images of life ("inochi") in Japanese. The responses from people in all countries reveal many similarities, and also that there is similar diversity in all countries. These open comments are published in English in the book, Bioethics for the People by the People, and they provide data to the debate.

In bioethics we should use not only the data of our own interpretations, but rather look for any other data that can aid us in understanding the real situation. Academics may often have abstract ideas, we need to come back to earth and look at reality. The data from surveys, and observations, reveals that there are fundamental similarities in reasoning by individuals in different countries, despite diversity in social systems and even greater diversity in legal approaches to bioethics. I called this the universal bioethics approach. This is different in focus from the approach of regionalisation of bioethics, into Asian bioethics, as Prof. Sakamoto was making. Though Asia includes the views of Christianity, Judaism, Islam, Buddhist, Hindu, Chinese, Korean, Thai and Japanese). However, in practical method there may not be a great difference because both roads, Universal or Regional, both desire understanding of local cultures, and want to recognise the contribution of different peoples to bioethics. In fact we cannot really develop a complete bioethics without including this contribution. Even in Europe, there is a lot of debate about the autonomy, or ego. In Europe they add more emphasis to solidarity. Also in the USA, we can see some shift towards recognising our duties to other people more. Harmony and naturality are desired by some people in all cultures, and in this century all peoples have abused power, not only in war.

When I am in the USA I often have a sad laugh at the term "Minorities" that is used to refer to black, hispanic and Asian Americans. As you will know, these are not minorities in the world. The minority is the white people. This term "Minorities" has political and bioethical connotations, and of course is necessary to attempt to prevent the preservation of opinions in a population which may differ from the majority, what we could call informed choice. However, it can lead to the nationalistic views that some would say the USA has, in considering their bioethics to be universal. This is not to say that the world can learn many things from the bioethical debate in the USA, and the policy in the USA was the subject of Dr. Nishimi's paper, which is placed earlier in the book in the section on Social Consequences of Genetic Testing, though it was originally intended for this session. She represents the Office of Technology Assessment, which has produced many informative reports on bioethical subjects, and has been attempting to fill some of the vacuum left by the absence of a national bioethics committee in the USA.

We need to ask people in many countries what they think, we need to look at their religious and cultural history, and we have to see how they live. We cannot do this by television, we have to visit and live in different countries, we have to have some experience, not only inside the seminar hall at a Seminar. In the week before this seminar about a dozen of us were gathered for the Tsukuba ELSI Roundtable, which gave time for discussion of different viewpoints, and was stimulating preparation for those of us who came on here. One way to grasp something of the thinking of a more representative sample of people is the use of opinion surveys. In the session this morning we had the opinions of a variety of countries discussed. We have to consider the usefulness of the different opinion surveys that have been presented. We had the presentations by the representatives of rather large groups of researchers. Dr.'s Verma, Hirayama, Kang, Lee, Lo, Ratanakul, Kaushik, and myself, who were looking at public opinion. We also had Dr Leavitt talking about the importance of traditional religious ideas and philosophy, and how this can shape our approaches and how we can get some ideas. Many of the issues in genetics are not so new in themselves, we can draw on the history that we have, and apply this to new situations.

We also had a comment from Prof. Verma, saying "Maybe religion should change with the times", maybe it should be "the application of religion should change with the times". In fact we can see in history of religions, changes between times where fundamentalism reigns to other times when there is more tolerance and understanding, which is what we together would like to see. We also saw the surveys of professional attitudes. Prof. Lo was also looking at this, and in particular Dr's Clarke, Shirai and Osawa. They were emphasizing how the practical experience of these medical dilemmas will shape our experience, and this is another factor which may be more important than the so-called "naive" public opinion. If we have education the public opinion may not be so "naive". Also for some questions I think that the public opinion is already well aware of the dilemmas in their life. We also had Prof. Bodurtha focusing on education, which is of course essential to explore, and the effects upon the receivers are not fully understood. I am also working on education of bioethics in Japan and Australasia, and we have found already many teachers discuss bioethics in biology classes. However, their understanding of bioethics may be quite varied.

In our search for international bioethics, which I think that this Seminar has helped us move towards, above all, we have to be humble, and look towards the ideas of others, while also suggesting our own. In the words of old prophet, "Listen, those of you that have ears to hear". This is cross-cultural international bioethics.

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