pp. 99-102 in Protection of the Human Genome and Scientific Responsibility

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

Copyright 1996, 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.

Kyoto Session Discussion

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Fujiki: Thank you for coming today, and we look forward to having three hours for interesting papers. We all the invited speakers, and pass on best wishes and deep regret from Madame Lenoir, who cannot be here today. We will show a video explaining some of the work of UNESCO IBC. First we invite Dr Hudelot, Director, Kansai Japan-France Maison, to open the Seminar.

Hudelot: Thank you Prof. Fujiki. I just wanted to welcome all of you here, and we are very pleased to have such an assembly of important people working on such an important subject, here at our Institute. You know that you are always welcome here, and we are so pleased to greet Prof. Okamoto here. We are also very pleased because MURS was an initiative of Prof. J. Dausset, and Prof. Fujiki. At first it was this idea of working on ethics related to science. I know that Prof. Okamoto is going to talk about the earthquake, and of course we are all deeply involved in the earthquake. Not only because it came to Kyoto, but also because we tried to help, with our small means, Japanese and French people who were very touched by this terrible accident. This is one of the main things to say today. We are very sorry that Madame Lenoir is not be here today, but I spoke to her yesterday, and she is here in spirit. This is very important. I am happy to host everyone to a reception after this afternoon's session.

Fujiki: Madame Lenoir was intending to welcome everyone here and open this session, but unfortunately her commitments mean she is not here. Prof. Okamoto, President of MURS-Japan, will give a brief opening address.

Fujiki: Thank you, now we ask Prof. Hanihara, the Vice-Director of the International Institute for Advanced Studies to chair Prof. Okamoto's plenary lecture.

Hanihara: Unexpectedly I have to chair this afternoon's session. Now we ask Prof. Okamoto to give his lecture, who does not need any introduction. He was a former President of Kyoto University, Chairman of the Ministry of Education's Special Education Committee, Chairman of the Science and Technology Committee, Science and Technology Agency. He has rendered a lot of distinguished academic service. At the moment he is one of the founders and former-Director of the International Institute for Advanced Studies in the Kansai Science City. He is now the President of the Institute, and the work of the Institute includes considering the responsibility of scientists, which he will now address in his lecture.

Hanihara: Thank you for your lecture, now I must hand over to Prof. Fujiki.

Fujiki: Now we have the video presentation, "Genome: Odyssey of the Species". The chairman is Dr Nishijima, who was a former President of Kyoto University. He is chairman of the UNESCO National Committee, and has a close relationship to Madame Lenoir. We invite his thoughtful comments on the video.

Nishijima: As we said already Madame Lenoir could not attend today. We will look at the video presentation on ethical issues raised by the Human Genome Project, produced by UNESCO International Bioethics Committee. She was made chairperson of the International Bioethics Committee in September, 1993, and before that she was discussing these issues with Dr Mayor, Director-General of UNESCO. During the last half of this century there has been development of biotechnology, and application of this for medical treatment raises issues of life and humanity. This also poses questions about God and intelligence, and there is no international forum for discussion of these issues. We recently have had an international seminar on science and culture. We need to consider the future of humanity, and all of life and death, to fully consider human dignity. In that seminar there were discussions of religion from Europe, and beautiful poetry including songs to convey ethics and religion from Africa, as well as discussion of the topic we concentrate on today. UNESCO has four pillars, Education, Science, Culture and Communication. Because this is the responsibility of UNESCO, they should include this bioethics committee within their organization. Madame Lenoir was the first woman member of the Constitutional Council of France, and Dr Mayor wanted her to chair the UNESCO committee. It is a shame that she is not here, so let us watch the video together.

Nishijima: This video looks at the Greek mythological story the Odyssey, where God becomes Human and Humans become God. Bioethics is a symbolic issue, we are facing to a new age, and need to ask what is humanity? When we used to talk with Dr Mayor, we would discuss diagnosis cannot be better than autopsy, but autopsy is too late. This is a difficult issue facing humanity at the moment, and we need to solve with our wisdom among different nations and different specialties. It is fifty years since UNESCO was founded, in the first five years after its work was said that the work was to make a perpetual question mark, this is still UNESCO's mission. Now thinking of this, we want to listen to the panel discussion.

Hanihara: We must now move onto the panel discussion. First we will have the lectures, then discussion at the end. First we invite Prof. Omoto. He is an Emeritus Professor of Tokyo University, and a Professor at the International Center for Japanese Studies in Kyoto, specializing in anthropology. He is focusing on human genetics, which is the point of view we want him to explore today. We heard from the anthropological point of view we had a warning for the Human Genome Diversity Project.

We welcome Prof. Mori, specializing in internal medicine from the Kyoto University Medical School.

Next we have Prof. Fujita from the Kyoto Pasteur Institute, his real specialty is nerve development, how our nerves develop. Today's talk is more of a general nature. He talked about our background of a long evolution, and the problems of politics and economics.

Our last speaker is Prof. Yasaki, who is will discuss the issue from the point of view of the philosophy of law. He is an Emeritus Professor of Osaka University. The problems of genetics are deeply related to society, and has a big effect on human society. From the sociological or philosophical point of view I would like to listen to this lecture.

Hanihara: Thank you for your talk, based on a sociological view. There is a little time left for discussion, so we will invite questions for the panel in general.

Fujita: I have a question for Prof. Omoto, who talked about the Human Genome Project. I wonder what is the value of this project? As you say you cannot explain simply with its value. In order to do this, it costs an enormous amount of energy and money. Is it a waste of resources?

Omoto: I agree exactly with what you say, maybe my expression was difficult. Since I have the microphone I want to ask Prof. Mori, also connected to Prof. Fujita's talk, human beings have a desire to want to know and also to do something with our knowledge. Another thing human anthropology made it clear that human beings, different from other animals, destroy the environment. Obviously we destroy more compared to other animals, human beings themselves are part of nature, so to change human beings is in a way destroying nature. But human beings are the only animal which judges values, and the judgment of what to change is for our own benefit. We try to change ourselves, so we think in that way; this is the view from anthropology. This is also connected to what Prof. Yasaki said. Only human beings are changing the nature which includes ourselves. This insistence that we have the right to be able to change and were made at one stage in evolution to have this right. He doesn't know the logical explanation for why we change nature and ourselves, and after today's talk I think it is more difficult.

Hanihara: This is a very difficult question, for Prof. Mori and Yasaki.

Mori: To change genes or add a new thing is, as you say, destroying nature and unnatural. In medical practice we desire to conquer illness. Because of this, we think it is OK if we do not touch the germ-line. That is why we have been doing gene therapy. if it is logically right is not sufficiently discussed. In Japan, from now on, listening to people's opinion, we have to do the appropriate treatment. I think it is still not too late to have this discussion.

Yasaki: These three people talked almost what I wanted to stay.

Hanihara: Would you like to comment about what Prof. Omoto said, destroying nature?

Yasaki: I want to give a little example. In New York Zoo in the Bronx, there is a mirror with a sign below "This is the worst animal in the world". It means people.

Hanihara: What you said sounds harsh to my ear because it is true. I want to ask Prof. Mori how do we understand the information from genes?

Mori: As a doctor, there is the opinion because they found it they want to use it. Who does the gene belong to? Generally it is understand the gene belongs to the person who the sample came from. What do you think?

Yasaki: For a person to get economic benefit from the things which exist in nature, or genes, is basically wrong. This is morally distorting gene therapy. We shouldn't allow this.

Kato: I am an ethicist from Kyoto University, and I have a different question about a word Prof. Mori used. I don't think that it is permitted that researchers check the genetic information of some individuals, and take a patent on that in USA. In case that you create something artificially, some creature which does not exist in nature, you can take a patent, but to certain individuals for example if I had a gene predisposing for a stroke, somebody cannot.

Mori: I don't know enough about patents. If you find a high risk and unusual gene predisposing for Alzheimer disease, and find the sequence, I heard that the patent is valid if someone else wants to use that gene as a probe.

Kato: Metaphorically there is a case to say that a registered patent should be given for special information, and to receive economic benefit, however, that is different from being given a monopoly. We must be careful about the words.

Mori: I haven't confirmed this, but I have heard that some sequences are limited in access based on money.

Hanihara: We only have time for one or two more questions.

Kato: I want to come back to the question about disease therapy. In the video somebody made the comment that in the advanced countries it costs much money to treat one hepatitis patient, yet in Africa that money could be used to vaccinate thousands of persons against Yellow Fever, for example. I feel the same thing. Because of the advanced technology in so-called developed countries, I wonder whether to use a lot of money for one person is good for humanity. What do you think about this? I always worry about this, and it is related to the patent issue. For the people in developed countries to connect their own knowledge to economic benefit, and not to think of all humanity is a problem. They ignore the big economic differences, and only advanced countries use their knowledge and go ahead with treatment.

Mori: Somebody said that the North exists because of the South's sacrifice. I think it is true in this case. But some of Southeast Asia is getting powerful, it means also that the destruction of nature will occur. From the scientific point of view it is good to make something if we know it was a good thing, and if we make in the advanced countries it will go to the developing countries. As a result it leads to the happiness of humanity.

Yasaki: I have a comment about the video, in which they consider the South-North problem, and the issues like this were not included.

Yamori: I was in the WHO on a committee looking at how we should approach these problems. These South-North problems cannot be ignored, even inside a country there are large differences in economic situation, economic power in concentrated in certain parts. This is the first problem. For many people to get benefit is of course important, but it is not good to pick one narrow subject and criticize it is not good, it will spread to other countries. We need to seek a balance. In an advanced country we need to think about the quality more, but always we need to think about balance. We have to judge seeing the who thing.

Hanihara: We have already gone over time, so I wish to thank everyone. Not only for the genome research but also advanced science is not only for scientists, but it involves sociological, philosophical aspects as well. Scientists should always think about these issues. I thank everyone for their enthusiasm.


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