Editors: Norio Fujiki, M.D. & Darryl R.J. Macer, Ph.D.
Fujiki: Before making my presentation on Bioethics in Human Genome Research, I would like to express my sincere thanks to everyone, as chairman of the last session. As I emphasised in my opening remarks, it is my great pleasure that this Seminar has been possible so effectively with the cooperation of all the participants. I have a few comments to add to my opening remarks.
Over the last five years I have talked on diagnosis, prevention and treatment of hereditary diseases, and the social consequences, at numerous meetings from the First International Bioethics Seminar in Fukui (1987), in the WHO Working Group Discussion (1989), and other meetings both in Japan and internationally. These five years have shown me the need to change the objectives of human genome research according to the ethical, legal and social issues, especially those associated with DNA diagnosis. We should emphasize the need to think carefully about the issues raised by each technology, including prenatal diagnosis, presymptomatic diagnosis and carrier detection for high risk persons with a given hereditary disease also about neonatal mass screening, genetic testing in the workplace, and general population screening for occupational and common diseases.
As I mentioned in my paper, and as was also emphasised by the comments of Prof. McKusick, the chairperson of the HUGO Ethics Committee, when chairing the first session, we need to emphasis the importance of public education for these issues of human genome research. Let us begin the presentations for the final session on Future Directions in Human Genome Research and International Bioethics. The first speaker is Prof. Kagawa, from Jichi Medical School, who is also the chairman of the Ministry of Education, Science and Culture Study Group on Gene Therapy. Thank you Prof. Kagawa for your presentation, are there any questions?
Morioka: Your presentation about "honne" and "tatamae" (Table 2) was interesting, and brought up an interesting aspect in Japanese bioethics. Is your "honne" in prenatal diagnosis to promote your research?
Kagawa: Thank you for your comment. Table 2 is for all people, not any academic speciality. But I would like to stress that feasible prenatal diagnoses are based on medically established solid results, and there is no scientific interest in performing prenatal diagnoses themselves. To express "honne", busy scientists will not spend their own research grant, and labour for prenatal diagnosis, unless they are supported economically and ethically. The prefectural support for prenatal diagnosis has been abolished by the opinion of some so-called "bioethics people" in Japan. Nevertheless, there are many doctors who ask for prenatal diagnosis to a genetic disease specialist without such concerns.
Fujiki: Maybe we can continue this latter. Our next speaker is Prof. Sakamoto, who is the former president of the Japan Association of Bioethics. Thank you, you may want to add more after coffee break. Are there any questions?
Kagawa: Thank you for your excellent talk. On this opportunity there is something that I'd like to tell the foreigners amongst us, and that is, that the value systems of Western people are very uncompromising, but Japanese, especially the Jodo school of Buddhism and the teaching of Shinran is harmony and tolerance. In fact another teacher, Rennyo, forbid something bad to be said about another school. The biggest ethical problem nowadays is the unwillingness to compromise, e.g. we can see fighting between Protestants and Catholics, or in India, between Hindus and Moslems. If we try to insist on human rights only they will never stop fighting. They tend to make very broad and scark statements on various ethical problems. Foreigners who come to Japan wonder why Japanese religious groups don't fight each other. When we think about international bioethics, nobody insists what you have said. Rather we see religious thinkers may even shoot their opponents by guns if they think that they are right. That side of religion is a very dark shadow to world ethics. I think we have to see the good side of Japanese society, it is peaceful and there is not much criminality, we have to consider that this compromising attitude is important in maintaining this.
Tranoy: I would like to make two points in response to the paper. Both concern my basic attitude to this, that there is not a sharp dichotomy between the Eastern and Western cultures that you would seem to be saying in your paper. Let me make two points for the proof of this. In the first place, in the Middle Ages in Europe there are very strong and very well known traditions which are closely related and very similar to those that you quoted from Eastern Buddhism. In fact, so strong, that there has been some speculation as to whether this was an influence on the West from Buddhism, but I think that this is a point which is not clearly shown. The point is that these tendencies, even if they are not predominant in Western culture, they are certainly present. The other point is that even among very outstanding Western philosophers after the year 1600, Spinoza, for example, who is one of the important philosophers and is very much read and appreciated even today, is the typical paradigm of the holistic, non dualistic philosopher. So there are points of contact between these two traditions in these two cultures. It is only another set of trends that are at the moment are dominating in the West, but this make for possibilities for new contacts in the future.
Sakamoto: In Europe it is certainly true that there have been holistic trends as well, but what I am talking about is the present and recent times. Also I have been talking about science in the modern age, which I think has been clearly under the influence of Descartes in recent times. I talked about modern times because bioethics was born as one way to cope with modern science. In particular, science as it has developed has been completely dualistic. In the Middle Ages you said that some have suggested Eastern influence on holistic thinking, but I think rather than Eastern this was Islamic influence. At present it is often said that Confucianism and Islam have a lot of points of contact, and similarities. Up to now Western ideas have had the greatest influence, but are some who worry that from now on and in the future that a combination of Confucianism and Islamic Influences may take an important role in influencing and leading our ideas.
Lo: I know very little about philosophy, and bioethics so perhaps I shouldn't speak, but Dr Leavitt from Israel mentioned possibly a blending of socialism and capitalism this morning. I am wondering whether there is much more contact between West and East. Do you think that there can be some type of blending between bioethics in the West and the East?
Sakamoto: I'd like to add one thing, I think that as you said, yes. However, I must not cause any misunderstandings here. I'm not saying that we don't need to have this idea of human rights, but I think that we need to become more used to these ideas. We are importing technology from the West, but the root of Western scientific technologies and the idea of human rights are in the same thought system. At the same time, as Western people try to internationalise bioethics, I think that they have to be sensitive to Eastern ideas. That is what I want to say.
Fujiki: Thank you, I am afraid that more people want to make comments, but we can postpone discussion until later. Our next speaker is Mr Igarashi from NHK Fukuoka, who is talking about recent genetics research in the United States. He recently made a nice television program. I asked him to come because of our concern for public education, and the mass media is at the front of this educational effort. We don't have much time now so we would like to have discussion after the coffee break. I planned to have Prof. Kuwaki's lecture on "Towards Ethics, Rooted in Philosophy", however, he was unable to attend this seminar, so we can only present his abstract in the proceedings. Our next paper is by Dr Morioka, who also attended the last Seminar in Fukui. Thank you, very much, we have time for one question now.
Leavitt: I very much enjoyed your paper, and you are of course right that bioethics has to be crosscultural, holistic, and interdisciplinary. You quote Pellegrino, that a traditional medical ethics should be done in a Hippocratic fashion. I think it should be pointed out that if you look not just at the Hippocratic Oath, but at all Hippocrates's own more extensive texts, you will find that Hippocrates had a very profound philosophy of nature, in addition to medicine. Even in the Oath he appeals to the gods, so he combines an interest in religion, philosophy, and medical science. I think Maimonides as well, the reason he was so great, was that he was a true student of Hippocrates, who was interdisciplinary. The narrowing of medicine is really a phenomenon of our own century, but not a tradition of truly Hippocratic ethics.
Fujiki: Thank you. Now we will have coffee break, and after coffee break we will continue our discussion, not only for this session, but also this mornings and the whole seminar. At this time I will turn the chair to Prof.'s Takebe and Macer.
Takebe: First Prof. Macer, will give his conclusions on this afternoon's session, then he will move onto a comparative view between the presentations from this morning. There are many questions raised by comparing different ethnic or religious groups, and he will summarise his survey. Also may we ask some of the participants from this afternoon or this morning who may add some additional comments. Then we will be open to general discussion open to all three days.
Macer: Just before I make some conclusions to stimulate discussion, one or two of the speakers this session were wanting to add a little more to their discussion. In particular, would you Prof. Sakamoto like to add something in response to Dr Morioka's ideas, and the development of Asian bioethics, and universality? No, perhaps later then. Prof. Kagawa, would you?
Kagawa: I would like to make one comment. No matter what idea you have on the fate of the fetus with genetic disease, if you let them be born, they will suffer or society will suffer. If some people want to insist on the right to life of the fetus, they should be more responsible for the life after birth. I would like to ask this of anyone who insists on the right to life of the fetus?
Macer: Would anyone like to answer that comment? No, well, let's come back to that topic soon. Mr Igarashi, would you like to add anything?
Igarashi: I would like to talk about what Prof. Nakanishi said about Prof. Wilson and his work at Pennsylvania Medical Center on gene therapy. He asked whether the decrease of LDL by 22% in a patient with hypercholesterolemia has any significance. I don't know about this as well, but we have to consider whether there is any real meaning to this decrease.
Macer: This decrease in LDL will lower the risk of heart disease for that patient which is good. Let us hope that this treatment will progress in the future. Dr Morioka, would you like to make any further comment.
Morioka: I'd like to comment about what I said myself. I have used the term "international bioethics", but I was not meaning that one universal rule of bioethics has to be applied uniformly to all countries of the world, but rather that in international bioethics there must be both a universal aspect and a local aspect. That's what I want to emphasise. So the question is what can be the standard for this universality in bioethics, and what do we have to deal with locally. I think that we have to start talking about this. What should be universal and what should be dealt with locally. I think that there may have been some misunderstandings about this, so I wanted to add this comment to clarify this. When we discussed about this in the Tsukuba ELSI Roundtable we found that basic human rights could be a universally applied fundamental principle of bioethics, but what other values apart from that can be applied universally? There are a lot of problems and doubts about proposals, so I'd like to continue discussion on that during this session.
Macer: Thank you, we will discuss that. I think that Prof. Sakamoto wanted to clarify that although he questioned whether fundamental human rights are always to be retained, even in Asian bioethics, he was also saying that he did not mean that we should not recognise the importance of some fundamental human rights. Could you please clarify?
Sakamoto: There was some criticism of my speech by Dr Morioka, but when I listened to when I listened to what he said, I thought that our ideas were actually very similar. There was some criticism of my ideas on fundamental human rights, but I don't want to use too much time on this. So I'd like to spend more time on constructive discussion.
Morioka: This is not intended as a criticism of you, what I've just said.
Sakamoto: If we have enough time, then I'd like to hear criticisms of what I have said.
Macer: Let me make my conclusions on the papers, which I hope can also stimulate the discussion. I hope we can look constructively at the draft seminar statement, which I hope we can get some spoken and written comments on in the coming weeks. Already I have several.
I'd like to have some comments on the concept of cross cultural bioethics, and I wonder whether it might be more helpful and productive to direct the discussion around the seminar statement. If we go through point by point, this may be the best use of the remaining time. Does everybody have a copy of this statement? If not please raise your hand and someone can get for us. First on article number 1, "Bioethics is an interdisciplinary field, not limited to any academic speciality, and including debate among all people, i.e. not only academics". Are there any comments on that, may be it is noncontroversial. I should also say that if you are going away today, we would like to have as many comments on this as possible, so please take to your colleagues and friends. We also plan to send this to several other international meetings that are happening this week in different countries.
Clarke: I'm not entirely clear whether it is a normative statement or intended to be a descriptive statement. Because obviously bioethics is limited to just a few academic specialities, and does involve very few people, at the moment. So it may be nice to clarify that this is what you would like to see.
Macer: Yes, we should clarify, that this statement is what we would like to see. If there is any disagreement we would like to hear it.
McKusick: If you want to achieve that the wording might be changed to "Bioethics should be viewed as an interdisciplinary field", rather than "is", because as stated it is not true, as just pointed out.
Macer: Yes, another wording change may be "among all people". As you may notice many of these statements are chosen to be rather noncontroversial, in order to get agreement. For example the issue of abortion will always be controversial, and would not be included here. On the second article, "We should develop international cross-cultural bioethics, for example studies and discussions, which respect individual cultures as long as they do not conflict with fundamental human rights". Yes, a few more comments.
Lo: Do you think it is necessary first of all to define what are "fundamental" human rights? It seems to me that there maybe different viewpoints on this question.
Macer: Yes, in fact I deliberately did not try to define it because that would take all afternoon.
Dausset: Just the same remark, because I wanted to ask whether the fundamental human rights are the same in all cultures? So you said you cannot define, but it is a pity because all is based on that. Of course it is very long to define, but a few lines maybe could be added. Perhaps a comment that we are sure it applies to all cultures or not.
Macer: Would you like to suggest any? Yes, I think it is good if we could.
Mykitiuk: In that context then I have some question about the utility of a statement like this one, which is so vague and general, in the absence of actually putting some meat on the skeleton, of the very vague principles that are articulated here. I question the utility of such a statement in the absence of a much broader discussion of what substantively is at issue.
Macer: On the question of utility, I think that we do not know whether people will find it useful or not until we see the response.
Dausset: May be it would be possible to refer to the Declaration of Human Rights, it would be a common text at least.
Macer: Yes, would there be any objection to adding "do not conflict with fundamental human rights, as outlined in the United Nations Declaration of Human Rights."?
Mykitiuk: What about all the other covenants?
Macer: Yes, all the other covenants is another question. I think that as you were saying in your utility statement, this is not going to be international law, it is not so important to define every human right, rather we can say in general, the Declaration of Human Rights.
Kuwahara: I am one of the non-scientists participating in this meeting. I am from Niigata, Faculty of Law. I wonder if I could propose to add "and the Constitutional limitations of each country", to article 2. The reason is that in Japan, as you may know, we have article 25 of our constitution, which states "All people shall have a right to maintain the minimum standards of wholesome and cultured living". This kind of provision would not be found in other countries. What I am trying to say is that every country has its own specific constitutional limitation on it.
Macer: Any comments on that?
Takebe: I'd like to exclude the word law because ethics is not based upon laws. For example, in article 4, it says harmonisation of some international laws, but I think it is very difficult to define laws related to ethical issues, so I'd prefer to avoid the use of laws.
Macer: Yes, before we go on there is another comment.
Clarke: I am not meaning to be destructive, but I am worried about the idea of trying to concretise the idea of individual cultures as discrete entities, because I don't think they really exist. Even within one country, for example my own experience in Britain, there are lots of different ethnic, cultural and religious groups, and if you try to label and say what culture people belong to, you can start stereotyping them and create offence. I don't know how you can get around it, but I am concerned to make the label of culture too concrete.
Macer: Yes, within one country you can have people of many cultures, and some cultured and some uncultured as well. Coming back to the previous question, before we go on, I think that although article 25 of the Japanese Constitution may be accepted by many people, I think it would be difficult to accept including individual Constitutions of different countries. We would find some of them that we would not agree with. Some would include clashes with fundamental human rights, as in the Declaration of Human Rights. I think that article 3 may be uncontroversial, that "The method of bioethics should aim for cross-cultural understanding. Such understanding is necessary to develop international cross-cultural bioethics." So coming to article 4, as Prof. Takebe said, should the word "law" be included in such a statement?
Takebe: I have some followup statement. After this morning's session I discussed with Dr Clarke that if Huntington's disease diagnosis was not permitted in the U.K., many people may go abroad to have a test. This is not controlled by the law, it is a sort of mutual agreement, or encouragement. It is impossible to control by the law.
Dausset: I think that this point 4 is just to avoid commercialisation, and in my view it may be simpler to include "The human body, cells, tissues or organs, has no price and thus cannot be a source of profit". This is what MURS has tried to enforce some years ago. I think that the dangers of commercialisation of transplantation are so high, at the present time, and also the same for the DNA. I would be very very precise on this point if it is possible, "The human body, cells, tissues or organs, or even DNA, has no price and thus cannot be a source of profit".
Macer: Does anyone have any objections to including this specific MURS statement.
Clarke: That is a very nice idea, but does it apply to blood? I think one ought to specify.
Macer: Yes, Prof. Dausset says it does apply to blood. I gave two examples in the first draft. For the question of organs, Prof. Dausset has suggested a better statement. Another example is people buying genetic technology for enhancement purposes, for example, if growth hormone is available in one country, we can go to that country and buy it from the shelf and use it to make our children taller. Several other examples were suggested to me, including the example of surrogacy by Dr Morioka. But I think that may be too difficult, because even in one country, like the United States, you have different states with contrasting laws. The issue of human embryos is even more difficult.
Leavitt: I am not sure where to draw the line. If somebody takes a job they are selling their body for 8-9 hours a day, I think this question of selling human tissues wasn't really discussed at the Seminar, so I am a little bit hesitant to agree with something that we haven't really discussed at great length. While I agree with the sympathies behind the idea I don't know if it has been clarified sufficiently.
Macer: Perhaps we can just use it as an example, and refer to the MURS statement. Yes, Prof. Dausset takes your point. About article 5, "Research on the reasoning of ordinary people should be expanded in order to understand the diversity of people's thinking. This is necessary for determining the degree of universality that is possible, but is not the only way." Reasoning could include thinking, or feeling and ordinary people in this case meaning non-scientists. The conditional phrase, "But it is not the only way", was in response to a comment from Dr Leavitt, that public opinion is not always to be trusted, we can think of times of war when the public opinion can cause many atrocities. We can also think of other sources of course, religious traditions, and there is a long history of philosophical thought. Any comments on that.
Clarke: If one is going to explore people's reasonings, then I think it is very important to pay attention to methodology. I think that the type of questionnaire that we have seen coming out of Australasia and parts of Asia is very limited in the way that it explores the way people think, and I want to appeal for a more anthropological perspective, along the lines of work coming out from people such as Marilyn Stretham, Sarah Franklin, in Britain, and I am sure that there are other people in other countries doing the same thing. They are much more detailed analysis of the way in which people are using concepts, rather than a checklist of questions yes and no.
Macer: Yes, I think so, you cannot only use yes and no comments to examine the reasoning. The work he is referring to is a way of examining arguments by connecting the arguments together in the reasoning. I think we can discuss that in a few minutes time, when we have general comments about this mornings session.
Lo: May I go back to article 4, because all of a sudden it comes to my mind that there are so many blood donors in the world. Some give voluntary and some give for monetary purposes how are you going to compromise between the blood donors and what you are talking about here.
Macer: Yes, I think in statement 4, with the MURS Statement including tissues and blood, because we did not discuss it at the seminar, I don't think we can include it. I think we can just refer loosely as an example to the MURS statement on there being no monetary value in tissues. Let us go on to article 6, "Human genome research and the application of genetic screening and gene therapy, like some other technologies, present some important ethical, legal and social issues which need to be approached/considered at local, national and international levels."
Tranoy: I am neither a physician nor geneticist, but I have spent some fifteen years of my life in close contact and collaboration with medical geneticists in Norway, and in other countries, and there are two impressions that remain with me, as a summary of this experience. The first is that there is no other branch of contemporary science which concerns us so intimately as individuals as does medical genetics. The other, which is more important, is that there is no other branch of science so difficult to make accessible to outsiders as molecular genetics. We've had several other references to physicians who do not know enough about medical genetics to have what we consider to be an informed opinions of the options that they should take. There is no mention of this particular problem in this statement. So my conclusion would roughly be the following; "that this situation should be accepted as an important challenge by genetic communities worldwide." It has to be faced in local arenas because it is only there that needs for specific types of education can be known. It should not only be accepted on paper, I think it needs some more systematic initiatives from genetic communities. We may need more empirical information about the actual lack of information, in order to go about remedying this very important need.
Dausset: I think that in bioethics there is a very important point which is the distinction between somatic cell gene therapy and so-called germ-line gene therapy. So I think that in a conference like this one a strong statement should be taken against germ-line gene "therapy", at least given our present level of knowledge. This would leave the door a little bit open. But I think that for the time being we should be strongly against germinal gene therapy, which could lead to some strong modification of the human patrimony, so in MURS we have this sentence, "Human genetic inheritance, given our present level of knowledge, should not be modified". Of course somatic cell gene therapy is quite acceptable.
Macer: Thank you. Does any one here have any objection to including an article like, "With our current state of technology, and in the absence of sufficient international discussion, germ-line gene therapy should not be performed". We should talk about it, but not perform it, until we have both technology and sufficient international discussion. As you were saying, perhaps the MURS statement is rather more influential than such a conference statement as here, but of course it would be good to include.
Morioka: Could you explain a little more about article 6, because when I first read it I have a somewhat strange feeling. Because you pointed out only ethical problems of genome research, what about other ethical problems. Is there are special reason for only choosing genome research?
Macer: The reason is that this seminar was talking about genome research and we did not discuss euthanasia or other issues.
Morioka: So I wonder what the title of this statement will be? Will it be a statement on International Bioethics concerning Human Genome Research.
Macer: So you suggest to modify the title to something like, "The Fukui Statement on International Bioethics and Human Genetics", would that be more acceptable?
Morioka: Do you mean that you restrict the scope of this statement to human gene technology?
Macer: I do not especially want to restrict it, I think that only article 6 is restricted to human genetics. The other article are more general.
Morioka: That is why I felt something strange about this list?
Macer: So do you think that they should all be general, and article 6 should not be specific?
Morioka: Yes, we should discuss this.
Macer: Any comments on this?
Joko: I am in the administrative staff of the government (Science and Technology Agency). One of my questions about article 6, is does this approve research and development work concerning human genome activities, or does it have some request to reduce such research activities. Which is the meaning?
Macer: The meaning is not restriction, because again, that would take too long to get a consensus. I think the meaning was more as you first suggested. I wonder if we could change article 6, to alter the first line to add, "Scientific technology, for example, human genome research...". Would that be more acceptable, using genome research only as an example. I take it the absence of objection means "presumed consent"?
Dausset: I think it is too vague, we should not make the addition.
Leavitt: Why not "The life and medical sciences," which includes genome research", but excludes scientific technology and machinery and other things that we are not talking about here?
Macer: Would that be more acceptable? To make it specific to life sciences, to read again "The life and medical sciences, for example, or especially, human genome research...".
Dausset: To use "for example" makes it a little vague.
Tranoy: Could you please read the statement again?
Macer: Let me read it again, considering the two possibilities, "for example", or "especially". "The life and medical sciences, "especially" human genome research and the application of genetic screening and gene therapy, present some important ethical, legal and social issues which need to be considered at local, national and international levels."
Tranoy: I suggest that you add the word "educational", to the statement.
Macer: Yes, what do you think Prof. Dausset?
Dausset: Yes, it is correct, but vague.
Macer: Well I think we also have some more specific documents in existence.
Lo: I prefer the word "especially", because genome research has such a tremendous impact, and it raises such a multitude of ethical problems, so I think the word "especially", may be better than "for example".
Macer: Could I ask people, to vote. Who thinks "for example", and who thinks "especially". Most think "especially", so it is better. Democracy at work. In addition we would have a statement on germ-line gene therapy as article 7, and the current article 7 would become number 8. Article 8 would read, "The above goals need the active collaboration of all members of society and the international community". It was suggested to me that it should be "all individual members" of society.
Clarke: I think instead of the word "need", which makes it sound a bit compulsory, we should have "would be promoted by".
Macer: Yes, maybe there are two different meanings there.
Leavitt: I'm sorry, but I think the active collaboration of all members of society is really idealistic and a beautiful dream, but it is totally unrealistic. So what I would suggest that might state the same sentiment more realistically is "In order to achieve the above goals there is a need for more effort to educate and involve all members of society, as to the scientific and clinical background, and the ethical principles and problems involved in the life and medical sciences." I thought that this might be a little more realistic.
Macer: Yes, so this is to change the focus to make it a call for active collaboration. Is that acceptable to people, in general. Yes, so in that case I think we will stop discussing this. Before we print the book we will try to send a copy of the revised statement to everybody, and please come back again with comments to Prof.'s Fujiki, Takebe, and myself, and we will consider these comments. Thank you.
Takebe: I would like to ask Prof. Macer to make some concluding comments on this afternoon and this morning's session, and in particular to compare the reports on the surveys from each country and ethnic group. Thank you for your good conclusion and summary of this afternoon's session.
Macer: I will do that very briefly, and then I would like to have discussion from other people as well. Let me move onto my conclusions on the Future of International Bioethics.
Would any one like to make a few comments, and then Prof. Takebe is going to make a presentation of some interesting results related to education.
Takebe: One point I was curious on is that in Dr Kaushik's presentation, one Table saying that people in Japan do not trust doctors. Can that question be answered by any clinical doctors?
Kondo: I already answered to Prof. Tranoy personally, but I will repeat publicly. In this country all kinds of authorities are questioned, not only doctors. However, this does not mean that authority does not exist, people are very anxious to be able to distinguish real authority from false authority. In such opinion surveys, such as the International Bioethics Survey as presented this morning, it is difficult to expose this particular aspect of people's attitude. I am a clinician, and I used to try to do the best for each patient when I was active in the clinic, but even so some patients mistrust me. There are reasons from their point of view.
Macer: Yes I think to add to that, doctors in Japan would have stronger authority than in some other countries, though also in Russia they would have stronger authority. In New Zealand they may have less authority, but apparently more trust. In fact, people may have no choice, they have to use medicine, so they can hope that you can find a doctor that you can trust. I think it is interesting in Japan now that we see the publication of lists, in some women's magazines, of doctor's who are trustworthy, and doctors who have a rather bad reputation.
Leavitt: I don't know whether we are drawing conclusions too quickly. In the survey the question was specific, asking would you trust their opinion about the "safety of a new product made by biotechnology", a particular item. I don't recall a question do you trust a doctor to treat you or cure your illness. So I think it is too broad a generalisation to say that in general in Russia they trust doctors and in Japan they don't. I think to answer this question we need a much more detailed and clear survey than this one.
Macer: Yes, thank you, your point is taken. Prof. Miwa would you like to make any comments about the doctors?
Miwa: As we have just discussed, the replies to this question obtained a very unexpected impression. In my opinion Japanese doctors are not really mistrusted that much. I think that the problem may be the way in which the question was posed. I think that from other points of view, it is said that you have to wait for three hours in Japan and you are only treated for three minutes. This is often said about doctors, especially about private clinics. In this case I think we can say there is a definite weakening of trust and reliance in doctors, that would be my answer to the question.
Macer: The survey results found that the trust in doctors in Japan was significantly lower, even considering the generally lower trust in authorities in Japan in the answers to this question. If you wanted to examine this question you would need a complete questionnaire. I think that the doctors that we see here are those who are actually trying to work for a better relationship with the patient. We can take another question.
Morioka: My personal impression from surveying the problem of brain death over the last few years, and the impression I have gained from this is that when we ask the general people, apart from doctors, whether they distrust doctors, many people say they distrust doctors. If we ask the doctors if their patients distrust them, they tend to answer they don't feel that they are mistrusted. So there is some kind of difference in the impressions of the two sides.
McKusick: I do see patients regularly so I can speak from the position of a doctor. In general terms when similar questions are asked of the public in the United States, the answer to the question "Do you trust doctors", is "no" and the answer to the question "Do you trust your doctor?", the answer is "yes". In general the medical profession is not trusted, but usually there is a relationship on an individual basis between the patient and the doctor, which is one of trust. So when you ask the doctor whether they feel trusted, obviously they are speaking in terms of individual patients with whom they work every day.
Macer: Quite true, also we select the doctor whom we can trust also. Now, Prof. Takebe would like to discuss the results from a survey he has been doing, and then make some conclusions.
Professor, Dept. of Experimental Radiology, Faculty of Medicine, Kyoto University, JAPAN
To summarise my impressions from all three days, these are the issues and topics we discussed, not necessarily in any order of importance:
1) Genome diversity was a basic concept discussed in all aspects of this meeting. This is also a big issue for the HUGO Ethics Committee.
2) Privacy and confidentiality and informed consent, were discussed throughout the seminar fairness in the use of genetic information, and life and health insurance were extensively discussed, and employment, and even the military draft in some other countries may require genetic testing. We didn't have time to discuss DNA fingerprinting to identify criminals.
3) Genetic diagnosis and genetic screening.
4) Presymptomatic diagnosis of the late onset diseases, such as Huntington's disease.
5) There is a big gap between the advancement of diagnosis and therapy, so there are many diseases which can be identified but which are still not able to be cured.
6) We did not have much discussion on gene therapy, but in our statement we emphasise a definite no to germ-line gene therapy.
7) We discussed education of medical professionals, students, doctors, and counselors. In particular in Asian countries there is essentially no formal training for counseling. For example, in Japan we have some genetic counseling courses for nurses, but there is no formal status or national exam to have qualified genetic counselors. This is true all over Asia I believe. As Prof. Milunsky pointed out there is a need for education for legislators, policy makers, and even for judges. Genetic issues are becoming serious social issues, but these people may have no knowledge or even incorrect knowledge which is incompatible with current science. Also we had a presentation on education for school children, covering from junior high to college education. My daughter is a student of psychology in a very big university, and her textbook of health care has just one short paragraph on genetics. It is the example of the fictious so-called Kalikak family, where one excellent person is married to the daughter of a good family and they had many good children and offspring, and he happened to have a mistress, a nameless feeble-minded girl, and unfortunately there were many bad descendants, so you have to choose carefully! That is the only lesson in that health book, only two years ago.
8) There has also been discussion of where people get information. It is from the newspaper, television, or mass media. So the mass media has a large responsibility. Also the need to have good understanding among the general public is another issue of this conference.
9) Commercialisation was also discussed in the proposed statement by Prof. Macer and patenting by Prof. Pompidou. There was also a tentative proposal for a DNA bank, which I will ask Prof. McKusick to make comments about. This will be necessary for international exchange of materials and to minimise the commercialisation of the genetic-related products.
10) This morning we heard many results from different ethnic groups and there was actually a rather small difference in opinions among religious groups. There are also factors of gender and age diversity to consider. Some countries may have population policies which may influence family planning and selection of so-called good or healthy children.
There may be some other important issues raised too, these are just some of the issues. I would just like to show the list of HUGO Ethics Committee members, chaired by Prof. McKusick. We met last year in Amsterdam, and there were ten representatives, three from the United States and one each from another 7 countries, We discussed essentially everything over those three days.
Takebe: Could I ask Prof. McKusick to make some comments about the HUGO Ethics Committee, before I close.
McKusick: I don't think that I need to add much. The co-chairs of the HUGO committee are Prof. Pompidou who was at this meeting, and Prof. Nancy Wexler who was not. The committee sees genomic diversity and patenting issues as two of the largest ones of international scope that it will be addressing. I should like to suggest another outcome of the Amsterdam meeting, which has already been implemented. This is for the initiation of an International Yearbook of Genetics, Ethics, Law and Society, which will go by the acronym GELS. I hope that it will do some geling of the thinking in this area which will collect on an annual basis documents related to these interrelated areas. This is being edited by Alex Capron and Bartha Knoppers, two members of the HUGO Ethics Committee. Since I am on my feet may I take this opportunity to thank Prof. Fujiki, and all of his colleagues for organising this marvellous meeting. Speaking personally I feel well rewarded for the time I have spent here and I think it has been a very thought provoking meeting, and a very valuable meeting for getting a feel for the points of view from many different parts of the world, and I would like to thank the organisers.
Takebe: I think this is the time to proceed to our final closing of this seminar. This is the final opportunity in case you have forgotten something. If not, I wish to say a few words in closing. Those who participated in Human Genome Mapping '93, held in Kobe a few days ago, may have realised that human genome research has been, or is, conducted essentially by so-called advanced countries. But if we consider ethical issues we have to remember there are large populations outside of those advanced countries. This meeting, thanks to Prof. Fujiki's and Macer's initiative, is one of the rare opportunities to have representatives from so many countries, including many Asian countries. So this is a very important opportunity to have representatives from so many different areas of the world, with different cultural and ethnic backgrounds.
In conclusion of those many issues, there are some basic concepts. Genetic risk, for example, should not be regarded as a risk just like cigarette smoking which can be controlled by each person's will. Genetic risk cannot be chosen or avoided, so this may be related to the basic concept of fundamental human rights. There was some discussion a few minutes ago, but my definition is that all people should be equal when they are born. Particularly when you are discussing genes, you may expand to the fetus or embryo, these are other difficult questions. It is another question how far we should go. By that definition then we should not discriminate any person based on genetic predisposition, so my conclusion is natural from those ideas.
I wish to make a comment on another basic concept for ethics and human genome research. Human beings without infectious diseases should be one of the major goals of medical science and practice, but human beings without genetic diseases should not be a goal, because it is not only impossible, but it also denies the diversity, or genetic variation, of living organisms. The ideal society is a human society in which all people with all types of genetic traits can live happily. Maybe this is too idealistic, but this is the natural conclusion of the last few days.
Finally, I wish to thank Prof. Fujiki again, and Prof. Torizuka of Fukui Medical School, and many organisations which made this seminar possible. We also thank the very hard work of the translators, and we thank the staff members who helped organise this Seminar. Thank you for your active participation.