Editors: Norio Fujiki, M.D. & Darryl R.J. Macer, Ph.D.
Emeritus Professor, National Institute of Genetics, JAPAN
1) Could one leave such a project that is concerned with basic blueprints of human life entirely to specialists? If the answer is no, how could it be guaranteed that the public will know about the planning and development of the project.
2) The issue of informed consent and confidentiality of persons who donate their tissues and cells needed for the project need to be discussed and addressed.
3) To whom do the biological specimens and research results of the project belong? Could they be monopolised by certain individuals in particular advanced countries? Yesterday we heard of the issue of patents, but we need to address the question of whether human genetic material is patentable or not. We need to establish some policy.
4) Carrier detection and prenatal diagnosis is becoming increasingly possible for various genetic diseases for which at present there are no effective therapies available. I personally think we should only perform such testing when there is a request from the individual patient or family. But this poses difficult problems in medical care services, not only for doctors but also for patients and their families. If the testing reveals that the subject is a carrier, how should doctors communicate it to the family? In some instances it can be more difficult than cancer notification.
5) Can the confidentiality of the person who is identified as carrying a gene or genes for hereditary disease be fully protected, especially in employment or life insurance? We need to protect individual's rights and privacy.
6) Genetic idiosyncracies will be made clear through the results of human genetic research, which could lead to genetic discrimination. Could the reality of genetic differences among people justify discrimination? Obviously the answer is no, with regard to basic human rights and dignity. We should be apprenhensive of the abuse of genetic information for "positive eugenics". We should never use genetic information for this type of eugenics for societies goals, as distinct from personal uses for genetic counseling.
7) With respect to points 4, 5 and 6, is it not necessary to formulate some guidelines?
We need to debate these issues, and at first five panelists are asked to make comments on some of these topics. After that, we invite comments from the floor. The first speaker is Yoshizo Ohno, from NHK educational. He has been developing programs on the educational issues. In the mass media, television is exercising enormous impacts to society. In terms of the Human Genome Project, a television program would exercise a large impact to society. The second speaker is an obstetrician Prof. Shinryo Shinagawa, who is involved directly with the clinical issues. In the Association of Obstetrics they have an Ad Hoc Committee concerned with ethical issues, which is rather rare among Japanese Medical Associations. In their organisation they are making clearer approaches to bioethics. The next speaker is Dr Makiko Osawa, she also deals with genetic counseling in pediatric clinics. She will talk from the viewpoint not only of a genetic counselor, but also of a mother. Following that Prof. Natuhiko Yosida, an expert in philosophy will talk about the essential problems of this issue. Our last speaker is Prof. Kotaro Nawa, who has a speciality in computer law and engineering, and will discuss DNA patentability, which is another important issue for researchers.
Ohno: Previously, Dr. Yosida gave us a very informative presentation. I cannot speak on behalf of NHK, my resources are limited. However, Dr. Yosida made a clear distinction between what it should be and what we can do. It is not always easy to implement what we should do, therefore the exchange of ideas is very important. Also discussing the system and society of Japan itself is important.
Yosida: I do not have much more to add. I appreciate that Mr. Ohno has understood my point very well. We always have a problem of how to be frank and candid, it can be awkward at times and it may destroy the atmosphere of the seminar, but you are generous to allow me to be frank.
Matsunaga: Having asked all the panelists, I now invite questions from the floor. Free discussion is encouraged.
Cohen: I am from France, and I want to expose the view of our National Committee on Bioethics, which has just discussed the problem of the patentability of the genome. Our position, which has been conveyed to the French Government, and there is a law that is going to be passed to the Parliament this month, is an extension of something that already existed. It is that no part of the human body can be commercialised, and this includes, obviously, the genome. What can be patented is, for example, if you have a certain gene that can manufacture a protein, you can express that after transferring it to something like Escherichia coli, or a cell, and if you can get the protein, and normal conditions for folding the protein, to make an active protein, you can very well patent that because that is a process, or an invention. But the human genome is not an invention, it has been there for centuries and millenia, and I think we are going to try to convince the other members of the European Community to adopt the same principles. The second point is a small detail about EMBL database. The EMBL database is a European nonprofit database, based in Heidelberg, Germany, because the European Molecular Biology Laboratory is there. It is an effort made by all the nations of the European community.
Tachibana: While listening to your discussion there was a very surprising result to me. The success rate of DNA diagnosis is very low, I imagined that DNA diagnosis is 100% sure and correct. That was propaganda perhaps. What is the reason for this low rate, is it because it is still in some trial period, or is it a limitation of the technology itself. I would like some people, perhaps Dr. Osawa, or some people from the floor to explain. I would appreciate your answers because the assessment of the technology will vary depending on this.
Matsunaga: Dr Osawa presented some examples, which the majority of researchers will agree with.
Osawa: When we have advancement of the Human Genome Project, making probes in large number and different types, diagnosis will be improved. When the mutations causing Duchenne-type muscular dystrophy are identified the accuracy of the diagnoses should be much enhanced. But even in such a case, by using markers you can do some things as described in my paper.
Nakagome: In Duchenne-type muscular dystrophy about 3 million base pairs are involved. It is much larger than many other genes, and therefore it is difficult to examine all the regions. Because of the size and magnitude it is difficult to cover all the gene. Also recombination can often be involved so that even with PCR there is still difficulty in diagnosis. This is not the case for all the cases of muscular dystrophy.
Chizuka: I would like to ask two points of Dr. Osawa. This morning I talked about the right to survival of humans. While listening to her presentation, she pointed out a very important issue. Fertilisation and conception occur from which cell division proceeds, and after nine months a baby can be born. At what stage does a human start to have the right to life to survive? This is a very difficult question, so what is your perspective as a professional? I am an amateur therefore I am always confused. Unless you know that point of time when the right to survival begins it is very hard to judge many things. According to the Japanese Constitution, as long as you are born, you are protected with this type of survival right. But in the bioethical framework when does the right to life begin? I would like to know your personal view. The second point is, during your presentation we saw the right of the fetus on one hand and on the other hand the right of the mother for self determination. The underlying principle is important. A woman gets pregnant, and the fetus is carried in utero, who has got the survival right? Can the mother decide the survival right of the fetus or not? Personally I think that there is a right of survival of the mother, but within the uterus there is a totally different entity, and that right of survival is totally different from the right of the mother. How do you make this distinction. I think this is the most underlying and fundamental issue underlying human individual rights. I appreciate your comments.
Osawa: The first question is at what point in time does the fetus start to have the right to survival. I haven't established my idea yet. When I read the Bible in the Roman Catholic view, the time of conception is given. Another concept is when the heart is started. Another concept is that when the central nervous system is created and the brain starts to function, the existence of a human begins. Therefore it is quite diversified. More recently people have suggested that the right to survival comes when after birth the baby can exist on their own, maybe 23 weeks after birth. But, personally, I object to abortion after conception. When conception is completed I believe the embryo starts to have the right to survival, but if there is any threat to the life of the mother, from other conditions, in a case-by-case manner, this principle can be varied I suppose. On the second point, you asked me whether the woman or the mother ought to have the property right over the fetus or not. As I described in my paper, prenatal diagnosis and selective abortion can be done. But the question whether to do this or not can be discussed between the doctor and the pregnant woman. There are many factors to be considered. I don't think that the mother or pregnant woman has got the property right for survival over the fetus. I'm sorry if my answer is not clear, but I have thought about this unanswerable question for a long time while being engaged in this clinical work.
Matsunaga: As to the first part of the question, I think, traditionally, i.e., without relying on modern knowledge of human biology, when the mother perceives the first movement of the fetus in the womb, usually the personality right is awarded. I believe this concept was accepted in many societies in the past, including Japan. We have just herad an interesting story from Mr. Ohno that a mother, who became pregnant with a second fetus with Down's syndrome, determined not to abort the baby because she had perceived fetal movement at the time when she was informed of the bad news of prenatal diagnosis. Perhaps Prof. Shinagawa may give us additional comments.
Shinagawa: I wish that I could have remained silent. As was said, this idea is very diversified. Whether it is at the instant of fertilisation, the earliest point. The next point is implantation, even if the fertilised egg divides it may not develop into an entity, and so people can argue that it occurs about two weeks after conception. Some people say, as was said by Dr. Osawa, when the heart is functioning, or when the central nervous system is functioning, the fetus starts to have the right to life. Also when the fetus is born as a baby it is not yet competent enough to survive with their own resources, others say they get the right when they become competent. In the civil rights interpretation only after child birth they have the right. Therefore it is a very controversial issue. The earliest time is conception, and people say that the earliest time is when the fertilised egg or embryo will grow given the appropriate place to develop and implant. I think this is the central argument in current society.
Takebe: Concerning this particular issue, Dr. Suzumori previously touched on related issues with in vitro fertilisation. According to some people, abortion is very controversial issue in America, but if we use in vitro fertilisation and preimplantation diagnosis we can avoid this controversy. But how do we discuss this problem. In Japan, in contrast, abortion is more easily accepted in society, and if so, do you think it is more desirable in society or not. If possible, Dr. Shinagawa, please discuss this point.
Shinagawa: Yes, preimplantation diagnosis was touched on by Dr. Suzumori, who is doing a few experiments in Japan. In the UK and the USA there are many more cases, for example in a recent NHK programme, Mr Kunihiko Kunamoto a journalist of NHK went to London where the technique was developed to discuss this issue. From the point of view of Japanese, these things seem quite hard to understand. Induced abortion is regarded as a sin. If the principle is established in that way, then maybe people need to go that far to resolve the problem. So maybe, they are making much effort, which should also be evaluated by us in Japan too. I think they are endeavoring so much, in order that they can avoid that controversial issue.
Takebe: Yesterday Dr. Suzumori mentioned about preimplantation diagnosis. I heard a rumour that abortion is such a big issue that in order to avoid this issue some people see this as more preferable. Is this true?
Matsunaga: Could I ask for an answer from an American representative?
Billings: I think from a practical point of view, preimplantation diagnosis is impractical. It is very expensive, and even with technological improvements I think that for the general kind of diagnostic problems it is never going to be a practical way of doing genetic screening, as a whole. I do think it is fair to say, that some of the interest in in vitro fertilisation and preimplantation diagnosis arises because of attempts to avoid the issue of abortion, which is very likely to become more difficult to get in the USA over the next couple of years. This will profoundly affect the way that we deliver genetic counseling in the USA, it will have a major impact on that. I also think that part of the reason that germline gene therapy is being more significantly considered in the USA, is the same trend, that is, to avoid the situation where we are going to have abortion as a potential option after genetic diagnosis. Yes I think its true, but it may not be the only reason, but its one of them.
Shirai: Can I make additional comment regarding this issue? I don't think there are many legal experts, my background is psychology. When I discuss this issue I would like to make a comment about the US situation. As to the issue of abortion, as was discussed by Dr. Wikler, in 1973, the Roe versus Wade ruling was issued by the Supreme Court. In that ruling the viability of the fetus was discussed, so that the demarcation line was drawn when the fetus can survive outside the womb of the woman. Before the viability of the fetus is possible the woman has the right, and after viability, the compelling interest is awarded to the state. Then the decision is made between the doctor and the women. The health of the woman should be considered, but unless maternal death is at risk, the abortion request will not be granted. This was the Supreme Court ruling. The point of this was, because of reproductive technology the time of viability is being decreased, to an earlier stage of pregnancy. With in vitro fertilisation technology, the embryo can be fertilised and grown outside the womb, then it is put back, and a baby can be born. Under these circumstances the viability concept does not apply any more. Such a concept, the stepwise moral development of an embryo's life was discussed in several steps through development by Prof. Peter Singer. The question is where moral responsibility should be introduced. We have a right and duty as human beings, but the fetus should obtain the same status, but this process of obtaining the same rights should be discussed stepwise, not all at one moment.
Matsunaga: With the advancement of technology I think there are new issues being created, perhaps that is the point.
Tachibana: In relation to that, I have interviewed Dr. Rihachi Ihzuka of the Keio University Medical School. According to Dr Ihzuka we have some moral issues that are important. It is possible, technically speaking, to use in vitro fertilisation, and grow the embryo up in an artificial womb. This may be realised in the near future as technology develops. I wonder whether this really true? Then there was a question of when people gain the right to life. At the ethical meeting of the gynecological society, they developed an internal code that they can manipulate the embryo in vitro only until two weeks. So is that the borderline of a human being? Internationally speaking in Europe and the USA, I understand that was the deadline that they drew in many cases.
Shinagawa: We may get an embryo, but it is not recognised fully as an embryo because it is at a very early stage. About the first point of an artificial uterus, perhaps Dr. Ihzuka made his own comment, I think that is very far away in the future.
Ohkura: We started out with a question to Dr Osawa. During the past few days we have had much discussion on ethical issues based on the point of view of providers. The consumers point of view has never been expressed. We have discussed some prenatal diagnosis and abortion issues. Abortion for socioeconomic reasons is very frequent in Japan, it is done freely, but it is officially not legally permitted to perform abortions for fetal abnormalities, so such abortions are very rare in Japan. According to statistics the numbers may be very surprising to foreigners. The numbers diagnosed are very small, and so the number of subsequent abortions are also very small. I heard of a survey where Japanese women are willing to have abortions when they are willing to be pregnant, but when they are willing to be pregnant they have much hesitation in abortion. I think this is the psychology of Japanese women as Dr Osawa mentioned. This is the point of view of a consumer, that is the point of view we have to start discussing. No matter how much the technology advances we will never be able to get to the consumer otherwise. We should further this type of discussion.
Roberts: I was only going to add further to the question from the floor about the low reliability of DNA diagnosis, by Mr. Tachibana. It was pointed out, by Dr Nakagome, the large size of the muscular dystrophy gene is one reason, with the share difficulty of covering all the possible mutations. But it is not only the large size of the gene that is the sole reason, because there are other genes which are smaller, for instance, we can pick up polyposis coli, but we are only accurate in about 70% of cases, because we do not have sufficient probes on either side of that particular locus. For those disorders where we only have a single probe on one side of the locus, then we have the possibility of crossing over between them. As knowledge develops, and we shall either be able to bracket with a second probe the other side of the deleterious gene locus, in which case we can virtually rule out crossing, or as technology further develops we would find a probe on the gene itself, or in some cases we can actually look at the basepair sequence within the gene. So there are a variety of reasons why we are still not at 100% diagnostic reliability.
Makino: I would like to ask Prof. Matsunaga, the chairman. Earlier, as an extension of what we have been doing it was mentioned that we can deal with the ethical issues. However, the Human Genome Project has just started, we have ten or fifteen years ahead. We do not know what will be the consequence, we do not know about this project. Although we say we can have an extension of the past, even at this moment clinical genetics and human genetics which are faced with a variety of problems which we are not able to solve. The question is, at this very moment, is it alright to continue as an extension of the past, including the ethical, social and legal issues?
Matsunaga: My personal opinion is that the conventional medical ethics have been applied with the development and progress of medicine. The Japanese medical society at the moment practises medical care services based on such tradition. Bone marrow transplantation, for example, has now a national network. How we can obtain a donor is a difficult task. If this type of network is well operated, if technology allows it, we can first start with bone marrow transplantation for gene therapy, the link is possible. The current medical ethics should be applied where it is possible for such application. If it turns out not appropriate then we can come up with a new code of ethics, and have a discussion. I think the existing medical ethics are applicable to most, if not all, issues in medical genetics that may arise from the development of the Human Genome.
Makino: I understand that, but only if such a discussion takes place in society. In the Inuyama declaration there was a declaration decided upon only by a group of experts, society was not aware of that. If we are only at that stage we cannot go that far.
Matsunaga: As experts in human and medical genetics, we should make much more effort for providing the public with information about progress in our field. The Japan Society of Human Genetics published in 1974 a report in which detailed account was made on what should be done for future development of human genetics in this country, with special reference to genetics education not only in medical schools but also for the general public I was responsible for editing that report. In our society there still is a lot of prevailing prejudice towards human heredity. The Japanese term "Iden", which means hereditary, is regarded as a synonym with fatalism and determinism. Biology teachers in high schools are generally reluctant to touch on this sensitive subject. we should include some aspects of human genetics objectively and thoughtfully in the high school biology education we should not forget to teach pupils that, while there exists abundant human diversity, each individual should be regraded as being equal in dignity and right, which is the basic principle of ethics in the world today. The essence of this report was reviewed and discussed by the Japan Science Council, which issued a recommendation to the Prime Minister. As for public education, I personally have been involved, a decade ago, in a series of lectures on "Genetics and Man" in the NHK television educational program. However, I think our effort cannot be enough so we need further efforts. Basically speaking, the educational issue is most relevant.
Shinagawa: I would like to make a few comments to Dr Makino's question. I generally agree with what Prof. Matsunaga mentioned. Traditionally there was a certain relationship between the patient and the doctor. The doctor was the centre of medical ethics. Based on this issue I think there are more issues that need to be discussed. At least there are three or four issues that need to be discussed in the context of the relationship between doctors and patients. We have been making efforts to save the lives of the patients. The more we make efforts the more we see issues of all the population. We should regard the patient only as individuals, in some ethical viewpoints we have to look at the human being en masse. This type of discussion was lacking in the past. Secondly there was a question regarding the fetus from the audience. We have some questions relevant to future generations. Discussion of these issues has not been sufficient. Thirdly, additional ethics were targetted to individuals as a whole, organs and germ cells which are part of these patients, should be the subject of further discussion. Fourthly the current medicine requires the cooperation of more then ten people for a single physician to function, including the nurses, x-ray specialists and so forth. I think ethics should cover all these people who are in the supportive side of medicine to physicians. We have to look at the human beings as a total mass, we have to look into human beings in future generations, we have to further discuss and review organs and germ cells, and we have to discuss what to do with bioethics relevant to nurses and other specialist health care workers. But basically we have no way, but to proceed with extension, as Prof. Matsunaga mentioned.
Takebe: I have two or three comments. Prof. Matsunaga mentioned about education. You said in the biological curriculum, but I think we should put it in the physical education and hygiene. I have read some textbooks of my children on hygiene, and in those books they talked about purity and hygiene, and about having a good marriage. The same thing is true in the textbook of university. The Kallikak family, where a family with a good wife and a family with a prostitute were compared. This was the only example mentioned in the textbook. This is very silly. It takes a lot of time for us to renovate the ideas of textbooks. We have to have a drastic change. Since Mr Ohno is here, and Prof. Makino talked about the media before, I would like to make a proposal to the media. Dr Keiko Nakamura is not here, I haven't got her approval, but I'd like to quote her comments. She said she participated in the NHK's Midnight Journal television programme and she was not satisfied, because they had a set conclusion before hand and she did not have enough time to say what she wanted, but she was directed to a certain conclusion that the television programme was supposed to obtain. Therefore she was not satisfied with the programme. I think people are trying to classify what they should do and what they should not do, I think that is not an ideal. One thing I was also very surprised about when I talked with Dr Nakamura, there was a BBC programme which was broadcast last year. The discussion was very much obsolete, and I was very much surprised that such a programme was actually broadcast because the science is advancing at a very rapid pace and that programme was something that was totally obsolete. I wondered why NHK decided to broadcast such a programme, I think it was very unwise for NHK to do that. Sometimes we get many interviews from the press people, and sometimes we reject having them. I think you should have a good discussion at NHK, and should make full use of the opinions of the experts to come up with a desirable programme. I really hope you will discuss the actual opinions, not the framed opinions. This would solve this dissatisfaction of you.
Ohno: I really agree with you, this is my only answer. I feel very sorry about that. I asked Mr. Tachibana to be on the programme, and I believe that he experienced the same thing. We think of the conclusion of the programme, and we ask the speakers to touch upon the results. It is quite true that sometimes we lack knowledge and we must reflect on ourselves. I do not want to make any excuses for this, I will report to my colleagues on this.
Tachibana: Since I participated in the program, I do not want to leave a misunderstanding. I created three programmes on brain death at NHK and there was no conclusion before hand, not at all, we just had a free discussion, and I never had any intention of manipulating those programmes. Other than that we created other programmes in NHK. Of course there are some director's who would like to have a particular direction or orientation towards a conclusion, and there are some others. I think it depends on the capability of the director. Of course there are some directors who are not very good. I think the senior people who allocate such people should be blamed.
Billings: I want to comment on the issue of education, since this has been a proposal in the USA as well. That public education is an important part of the ethical program to improve the decision-making. I just want to comment that it is not only education about genetics that is the issue, the Mendelian principles, and DNA. But it is also something about the conditions themselves. It seems to me that in the USA, for instance there is a very popular TV show, with a star who has trisomy 21, and this has done more to improve public understanding about the range of this particular anomaly, or the fact that far fewer than a quarter of the children born with this particular anomaly die before the age of six in the USA now, than anything else that could have been done. This representation of the anomaly has been very important to public understanding than anything else which could have been done about it. Similarly, if the public understands that the average life expectancy of a person with cystic fibrosis in the USA is between 40-50 years now, just with general improvements in treatment, that has nothing to do with gene therapy, or of understanding of the gene, it just seems due to better hygiene and care for these individuals, the utilisation of genetic screening for cystic fibrosis will change. While if we present it as being a very severe disease understood to lead to people dying in their teens or twenties, the consumers will want to have more information about cystic fibrosis, because it is a different disorder, in some meaning. So, it seems to me that as other societies, as our own, look at genetic education, that also as Dr. Wikler says, representations of what disability is, will have a major impact on the public understanding and of the public utilisation of this techniques. If you have comments I'd be very interested.
Matsunaga: Thank you for your very useful information.
Kuwaki: Well listening to the discussion so far, there are many things I would like to mention, but I would like to mention a very simple thing. Last year I attended a symposium, and one commentator said what we have to improve are the politics, administration, universities and mass media in the 21st century. There is no criteria, and there are several factors which are the cause of the corruption of those institutions. I would like to comment something related to this. What does it mean to say that there is no criteria that the mass media is dependent upon? There are many opinions from the people from mass media. Also universities need to be improved.
As to the medical education, I would like to comment. The general education is very important especially in the human science. Such education can be given, but in the natural science prior to graduation such education should be provided. Especially in medical education, medical ethics and bioethics are very important topics. Courses on these themes should be provided in the medical training, and prior to graduation they should be provided with such courses. In most of the medical and general universities, those who have very high scores are allocated to be in the Department of Medicine. But they do not judge the applicability or suitability of the students, but only judge according to the high scores. For example in Fukui Medical School, Dr Yamamoto who is my friend has only one course in the School, and it is very unfortunate for him, because he should have more chance to speak on bioethics to the senior students before graduation, so that they can improve the quality of the students from Fukui Medical School. And I expressed my view to him, and to Prof. Okamoto, and I think Fukui Medical School is a most appropriate place for having such an education. I just wanted to mention those two points, thankyou.
Matsunaga: Prof. Fujiki would you like to make any comment?
Fujiki: I appreciate what you have pointed out, and Prof. Torizuka and we will also think about it, and give it special consideration. Prof. Yamamoto and myself are teaching the courses to the sophomores, and afterwards jointly with Prof. Yamamoto we visit the institutions for disabled people and the elderly, and such a focus is given to the sophomores, considered to be our exposure. We hope that they will learn what are human beings. I would like to mention the importance of such a course. They will learn the theory, while at the same time learning about somepractical issues by visiting such institutions in the sophomore year.
I didn't have any chance to speak today, but in a previous conference on Genetics and Society I presented the results of a questionnaire that we gave to students and the public regarding knowledge of genetics, and ethical problems, and handicaps. Especially relating to the questions related to the Human Genome Project, I asked the people whether they were for or against such a project. At that time we thought that we would find that those who were for the project, who saw the benefits from science, and those who were against such a project said that it would be misused, and those people that were uncertain said that there were some advantages and disadvantages, therefore it is difficult to determine whether it is right or wrong. Another point from the questionnaire, was that neither public nor students had ever had heard of such a Human Genome Project. Thus from both the students and public we learnt that it is necessary to provide such education to the general public, and I also thought that it is necessary to provide such education to students and doctors as well. When they enter their junior year they will enter clinical education, and they will accumulate knowledge about the clinical situation, and again they will receive a similar course before the senior year. In the final year they will learn about the dignity of human beings and the proportion of students who learn about the dignity of human beings were increased. For clinical issues practical medical education is also very important. Prof. Torizuka, the president of Fukui Medical School is here, so I want to have his comment too. He is in a very responsible position, and probably I made a statement on behalf of him. He agrees with what I have said now. Under such circumstances, Prof. Yamamoto has very few opportunities to provide courses, but he has such a chance.
Kuwaki: I feel very relieved that there should be well educated and nice good doctors to be born. About the mass media I will talk with Mr. Ohno personally later on.
Matsunaga: We still have a few minutes left. More questions please.
Aoki: My question is a little different from the discussion now. At the beginning Prof. Matsunaga mentioned that conventional ethics was very important , but now we have recognised that we are going to have a discussion about the ethical points of the new technological developments of genetics. Do you have any confidence that the conventional medical ethics can be applied to the new inventions of today.
Matsunaga: Yes, as far as new inventions are concerned with medical care services. Taking gene therapy for example, its technology is still under development, but it will be available in the not too distant future. With current medical ethics, if the disease of the patient is obviously fatal and there is no other efficient treatment, then, after carfeul balacing of the benefit versus the risk, and with informed consent, I think, we may be allowed to make a trial. So gene therapy of somatic cells may be dealt with like a treatment with a new drug.
Sun: I think I have the responsibility to make a comment about China. This morning, Dr. Billing showed us a newspaper cutting saying that China enforces tube sterilisation. But I don't think this is true. We just had the first ethical meeting last november and we only talked about this topic. Someone said that we should do this tube sterilisation, and some were against. We tried to find an ethical basis for this decision. It was just discussion. Just three weeks ago, we had a lady who is mentally retarded give birth, by cesarian section, and we don't know whether the baby will be mentally normal or not. That is one thing. In China because of the open and economic reforming movement, different opinions and conflicting opinions are expressed. One side is the family planning opinion, and on the another side we have so many test tube babies from in vitro fertilisation. I also would like to give information about a meeting to be held in May about the prevention of birth defects and improving child upbringing. This is actually a symposia for eugenics. I think Dr Chu will give a talk about the bioethics, and what is good for China. We need a lot of wise advice, so please come to China and give us advice. Thankyou.
Matsunaga: Thank you for your valuable information. In the advanced countries there is some concern about the reported compulsory abortions or sterilisations in China, but I am very pleased to hear from you that there is much discussion being made. I personally think this is very important.
Now it is time to close this session. Many opinions were expressed, but what is most important in such a session is whether we could have proper dialogues among people from different disciplines. A proper dialogue is possible if and only if both partners understand each other through lively discussion. I feel very glad that persons from mass media or philosophy on the one side, and people involved in clinical medicine or genetics on the other hand, were able to have a nice discussion. One point that I feel is unfortunate is that all but a few of the molecular biologists, who are actively engaged in the Human Genome Project in Japan, left already. In order to promote the project in this country in a sound way, we certainly should avoid such a situation. I think of what Dr. Watson said in the USA, that, in the Human Genome Project, 3% of the budget should be spent for discussion on the ethical, legal and social issues. We appreciate Prof. Fujiki and the organising committee for having this symposium. If possible, in the next symposium in the future, I would like to see more molecular biologists to participate in the discussion of this kind. Let me thank you for your cooperation and we would like to conclude our panel discussion.