p. 33 in Human Genome Research and Society
Proceedings of the Second International Bioethics Seminar in Fukui, 20-21 March, 1992.

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


Copyright 1992, Eubios Ethics Institute All commercial rights reserved. The copyrights for the employees of the US Government, are subject to other copyright arrangements. This publication may be reproduced for limited educational or academic use, however please enquire with Eubios Ethics Institute.

Historical Background on Bioethics in Medical Genetics

Kazumasa Hoshino,
Director, International Bioethics Research Center, Kyoto Women's University, JAPAN


In this session the first speaker, Dr. Michael Yesley will talk about "The bioethics process in the United States of America, who decides", and the second speaker, Dr. Kiyoshi Aoki will discuss about "The historical background of bioethics in medical genetics in Japan". It seems important to note that both topics are based upon bioethics and not on traditional medical ethics.

Bioethics was developed during the patient rights movement as one of the various civil rights movements which took place in the 1960's in the United States. Patients and their families and supporters accused physicians and surgeons in general of being paternalistic and dogmatic in their attitude and behaviour toward them. People demanded the rights as patients to know the truth about their condition and its consequences. They wanted to be self-determined in their decision-making and able to give informed consent. Doctors were obliged to tell the truth, to provide proper options in order to enable patients to select the medical procedure which seemed most suitable for the patients' needs, to respect the patient's wishes and will, to have patients make their own decisions autonomously, and to let them provide doctors with informed consent. Basically in bioethics, it is important for doctors to respect their patient's will, and to secure freedom in their decision-makings.

In light of this, it follows that Dr. Yesley would emphasize "who decides" in his presentation. Dr. Aoki in his presentation seems to be most concerned about some possible conflicts between rapidly and significantly advanced modern science and medical procedures, especially genetic engineering, and the associated ethical values.

With these issues to be considered, it seems that we ought to be constantly concerned with the well-being and prosperity of mankind in the present as well as future generations, in addition to the doctor's obligation of respecting the individual will and freedom of patients concerned.


Discussion

pp. 50-52 in Human Genome Research and Society
Proceedings of the Second International Bioethics Seminar in Fukui, 20-21 March, 1992.


Hoshino: The two presentations were made from two different perspectives. The presentations were very clear and emphasised important point. We would like to invite questions, first for Dr. Aoki.

Yosida: In your last presentation you mentioned something. Are you saying that Western religion should not be used as a solution? Do you think it is wrong to use Western religion as a solution to the ethical issues that we face now? We should use approaches of bioethics, which is based on Western religion, is that what you mean?

Aoki: Yes that is correct. I think we have to be thorough. Science and technology is being imported, from the West. If we are to import the science and technology we need to also have the bioethics, with that same tradition. However, we also have to look into the historical background that we have. New science and holistic issues. People sometimes try to deal with these issues from Zen, and I am against just talking about these religious solutions. I think there are many ways of thinking in science in West and East. In West people say religion started from the Judeo-Christian roots, therefore the science and religion are very deeply related. Some people say the science and religion go hand-in-hand, especially in terms of religion they say there are certain value systems which play a very important role in the development of the world. So is your understanding based on these perspectives?

Yosida: Scientific methodology is based on this background, but are you saying that people who do not understand monotheism do not understand science? Is that what you mean? If you go further people may not be able to understand. I don't know about the audience here, but some people believe in a single God, and other people are against a single God. All these people, do you think that they are not qualified for the bioethical seminary? This is a very important issue, because what has been developed in Europe has a certain tradition, but this is something that encompasses all the people of the world. This is playing a very important role in influencing the whole world. If people not believing in a single God are disqualified from participation I think this is very unfair.

Aoki: I understand your point, perhaps my explanation was not enough. I'm not saying that these people are not acceptable, but I think mutual understanding is enough, because there is freedom. I am not denying that. But the origin of current science and technology should be understood. How people were born and people have personality, this may not be relevant. But, as I listen to you, I think your understanding and mine are different. But my understanding is that at least science can be studied from different perspectives than the single God principle. Science or scientists are taking science as something very easy, but science is somewhat complex, scientific analysis will not solve the bioethical issues. Of course science is very important, but it will not be sufficient.

Yosida: Thank you very much, I think ethics is different from science.

Billings: I'll try not to ask a question about religion or God, but I will ask you about an issue which is important in the USA. The relationship of bioethics to the basic science endeavor, to basic scientists. There have been a couple of interesting developments in the USA. One really grows out of the issue of data falsification and publications, which is that the NIH now requires that scientist's on their training grants receive ethical courses and training during their graduate research. This is a fairly substantial advance, and says something about the interplay between bioethics and the basic science training process. The second development is the ELSI program. It is rather unique, both in its size and that it occurs at the same time, and through the same fundamental funding mechanism, as the basic science program of the human genome initiative in the USA. So bioethics is put right at the beginning of the basic science effort. On the other hand, there is a sort of joke in the USA, for the tendency at bioethics conferences in the USA to invite the prominent basic scientists to give a lecture early on, and then they leave very quickly, or they fall asleep. So there is a funny relationship between the basic scientists and the bioethical community. I wonder whether you have any sense of how this might work in Japan, and what is the proper relationship between the study of bioethics and the conduct of basic science.

Aoki: I think this meeting is one example of such a relationship in Japan. It is organised so that at first we have speeches by the scientists, where they explain their progress. And then the bioethics and religious people talk about the value of human beings and religion. Then there will be a discussion between the two. This is the typical relationship between the two, and the typical arrangement for a seminar based on bioethics in Japan. We have the Japan Society of Bioethics. Every year they hold a big meeting. The form of the meeting is like the one that I explained. First the scientists talk about their own progress, they do not talk about bioethics, then people from the bioethical community talk about their own ethical, and legal opinions, based on what they hear. Not much discussion is going on between the two in good harmony. But, one of the recent developments is that bioethics is getting good comments. In the past bioethics was following the science, but in recent years the bioethics is trying to go ahead of the science, in giving opinions and comments. I think this is good.

Hoshino: I don't think the moderator should make much comment, but what is the basis of this discussion is the question. This seminar is based on the advancement of Human Genome Project, and bioethical issues relevant to this project are to be discussed in this seminar. Now we are talking about advanced technology and bioethics, but from the bioethical point of view to what extent can you advance is not the question. How we can apply the advanced technology to human beings? To what extent that will benefit the welfare of human beings? I think these are the things that bioethics should deal with. Science and technology and its discussion is not bioethics in my understanding. Otherwise, we will have miscommunication as we had earlier.

Tachibana: I found the earlier discussion quite interesting, but I think there was a discrepancy between the opinions of the two because they were not very well streamlined in their opinions. I would like to ask Prof. Aoki, when you said that bioethics originated from the West, what do you mean by the Western origin? In excluding what Prof. Yosida mentioned, what do you mean by Western? Another point of discussion related to the discussion of natural science and the monotheistic tradition was pointed out by Prof. Yosida, but historically and generally, natural science was established when Western society came away from religion. If we are to preserve the tradition of the monotheistic understanding, then it is easy to understand the basis of the ethics, because we just need to refer to the tradition of religion. But if we are to come apart from that we need to disregard all the religions. We have to come up with the basis of ethics that can be followed by all the people concerned. The question is then where the basis of ethics is, can I have your comment?

Aoki: In your first comment I think the human rights movement is still rigid, human individuality is very important, but in the case of science individuality should not be emphasised too much. Perhaps my explanation was not enough, but in science sometimes we try to classify human beings into several types, so sometimes it is not individualistic. We emphasize human rights, that is the starting point of science. That kind of tradition was lacking in Japan. At the time when Prof. Kimura introduced the understanding of bioethics there was a lot of confusion. As I said earlier, when bioethicists from Georgetown University came they first started the discussion from the point of view of the individual human rights movement, which was something totally alienated from the Japanese point of view. I think we have to get accustomed to these understandings as well because the human rights was very much emphasised. This means, we need to have much better understanding of science and its technology, and we have to look into individuality. Talking about monotheistic religion, as you say we are coming away from religion in science. DNA development is trying to include everything, human beings are taken with everything in the study of the whole of DNA. In the past the relationship between science and human beings and animals was separate. Without being able to solve the very basic starting point of the discussion we will not be able to solve this discussion further. In Christianity they have their own ethics, and based on that ethical viewpoint they have a very well streamlined theory. That is one example. We have to have a good streamlined theory in solving these problems, we should not just mix up everything. The nature of science, and nature of its traditions and these backgrounds should be well understood. I don't think that this is an issue which can solve everything I don't know if I answered your question.

Tachibana: Thank you very much.

Hoshino: It is time to close this session, I am sure there are many other people who would like to make comments, but thank you very much.


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