pp. 287-289 in
Bioethics in Asia
Editors: Norio Fujiki and Darryl R. J. Macer, Ph.D.
Eubios Ethics Institute
Copyright 2000, Eubios Ethics Institute
All commercial rights reserved. This publication may be reproduced for limited educational or academic use, however please enquire with the author.
Discussion on Gene Therapy
Ivanov: Prof. Kagawa did not participate so that I will chair the session. The first speaker, was myself. Our next speaker is Dr. Shirai. We have time for one or two questions.
Wertz: I would like to say that in the USA the public seems to be overwhelming in favour of germ-line gene therapy, in a survey done by the National Center for Human Genome Resources, using some of the questions used by the Office of Technology Assessment in 1987. In 1987 only a minority favoured germ-line therapy but now over 80% do. They did not use the word "germ-line therapy" because that may scare people, and they do not know what it is, but they described it as gene therapy that affects not only the human individual but also will prevent a disease from occurring in the individual's children, and their children. The public is in favour of it, but the experts are not.
Matsuda: Are gene therapy and gene manipulation of intelligence different?
Shirai: Thank you, both are good points. I used the expression "gene therapy" in Japanese for both applications.
Sakaki: I would like to make a comment on Dr. Shirai's talk. This afternoon I found an interesting poster presentation by Ms. Muto, and she analyzed the attitudes of doctors and patient families to a lethal genetic disease FAP. Interestingly, patient's families are much more positive to the genetic tests than doctors. That is a big difference to what Dr. Shirai presented, which was that the expert is more positive and lay public more negative. The big difference may be that Muto's questions are to patients and families who are directly facing the risk, but Dr. Shirai sent to the more general public. As a general problem people may look at what is comfortable to the heart, but if really patients are facing the risk I think the attitudes are different. I think opinion surveys can mislead us on the necessity of this kind of technology. We must be very careful in surveys. I am a molecular biologist, not a clinician, but still I believe that we really need new technology, and if many people are facing to the risk, people expect new technologies rather than just fearing the new technology.
Shirai: Thank you it is a very nice and important point to talk about the new technologies for treatment or testing. Generally speaking I suppose that Prof. Sakakifs comment is important and proper for the personal clinical relationship between doctor and patient. However, I think that medical treatment has not only personal character, but also lies in the common social future, so it is necessary to think about how member's of general public think about technology, and how to relate the social consent to decisions on use of technology. Another point is how each society tolerates each of these technologies.
Sakaki: I think these problems have several aspects. One further point I would like to comment is that generally people talk of gene therapy, but as Prof. Matsuda pointed out, even the word gene therapy, is sometimes gene manipulation not therapy. This is confusing in community. Before we talk about new technologies, at first even the lay public should understand the technique precisely. Often journalists just give fears about new technologies, and this is one difference between the lay public and the hospital expert, as in Dr. Shirai's paper. To ask the lay public at first we have to give precise information, not technically but as a concept, otherwise we always mislead the lay public. I do not know in the USA or Europe, but often in Japan, journalists give a one-sided viewpoint, and sometimes it misleads the public.
Macer: In a series of opinion surveys I have conducted in Japan and in Asia, in 1991 the attitudes to gene therapy from national random samples of public and scientists were exactly the same, as they also were towards prenatal diagnosis. Both were generally supportive. The 1993 survey showed increasing public acceptance of gene therapy in Japan, among the public. In 1995 I conducted surveys among university doctors and they were actually less supportive of prenatal diagnosis, but the same as the lay public for gene therapy. If we are recognizing the informed choices of the public, the technology should be available to them within limits. We come to major questions of debate. We have two big problems in the future when gene therapy becomes effective. There is no division for the case of curing a person with cancer, therapeutic goals. In every society surveyed 85-90% support this. There is however a division if we use gene therapy to improve physical characteristics, or intelligence. Japan follows Australasia, and Europe, Russia, and North America, in that only about 20% of people support enhancement, so we have a problem do we let those people use enhancement or not? The other problem is that in some countries, like India and Thailand, among well educated samples, in Thailand 80% supported enhancement and in India 75%, supported it. Then it becomes an international public policy question. There are two problems then. In industrialized countries, 20% say "Why not try it" to improve our childrenfs future by genetics. In some other countries 70-80% say this.
Leavitt: One of the questions that has to be asked is whether ethics of genetics is fundamentally different to other issues in medicine? I was wondering when listening to Dr. Shirai's talk how many of these questions could be reformulated to other areas of medicine. For example, do you approve of surgery to prevent to cure a fatal disease, or prevent a future disease from occurring in a now healthy child, or you could ask about cosmetic surgery, or plastic surgery for cleft palate. I wanted to make a suggestion about whether a survey has been done using very similar questions about other branches of medicine, in order to see if these attitudes are specifically because genetics is being talked about, or if these are general attitudes to enhancement uses of medicine.
Wertz: I think this comment is excellent. I think most of the ethical problems in genetics are similar to problems in general medicine. What is different about genetics is that it affects other members of a family, so you have disclosure problems, accidental findings like non-paternity which arise from tests done for different purposes, in some countries you have a tradition of non-directiveness which is very different from any other medical tradition in any other area of medicine. But most problems are similar to general problems, and as we find more common diseases have genetic components we will find more similarities. I would add that I think we are going to enhance ourselves, and I think this will be the ethical problem in genetics in 100 years from now, not negative eugenics but positive eugenics. We are going to do this because we have been doing it already for a long time in other areas like hormone treatment, cosmetic surgery, all kinds of therapies to make ourselves not only normal but better. Whatever lines bioethicists try to draw, it is not going to work, we are going to enhance ourselves. We are going to have ethical problems about commercialization, about who owns these therapies, who can afford them? We are going to have different social group and race problems as different groups enhance themselves, at different rates.
Ivanov: Thank you, the next speaker is Dr. Salvi. Thank you very much, we can have some comments.
de Castro: Do you think there is a qualitative difference in the kind of transformation that takes place in the way gene therapy is intended in the laboratory or the clinic, and the kind of transformation that takes place in nature?
Salvi: I think there is a big difference, basically. When we are interrogating on the moral meaning of genetics, we are thinking of the moral implications of human interaction with natural laws. That is why we are here. I think germ-line therapy is a new kind of scientific responsibility because we are creating new organisms, and these new organisms will be reproducing, duplicated. So the consequences of this act are extended in time, which is extension of a basic property of organic systems, it's molecular expression. At the same time we are producing a consequence rate which is completely new in science, because we can really interact with population dynamics and evolution. I think this is a new responsibility of science. So we cannot compare a human genetic transformation or biotechnological alteration of natural laws, because these are two different things.
Wertz: In this discussion of DNA and identity, I think we need to avoid genetic determinism. We are not our genes, our identity is not the same as our genes, and DNA is not our soul. Though a lot of people think this way when they describe DNA. But if you are changing somebody by somatic therapy, or simple medical therapy, you are changing them. As far as that individual is concerned, I do not think there is any difference whether you affect the DNA through genetic engineering or whether you do something else. It is still an individual and the DNA is not the identity. I think you are right when it comes to consider the potential for germ-line therapy to make a mistake, which can then replicate itself.
Salvi: Yes, but at the same time, since we are talking about first development stage of an organism, we have to see what role the DNA has in this embryogenic stage. I do not agree with biological reductionism, but life is also the expression of physical and chemical processes, and so in my opinion, we have to think what kind of role DNA has in the global phenomenon of individual identity. We have to stress the meaning of DNA in moral analysis, like the one I outlined, because we are working at the molecular level.
Mauron: Thank you for a thought-provoking presentation. I have two questions. I quite agree with you that the role of DNA in identity has to be clarified, but one problem is that the kind of biology that informs this clarification is somewhat approximate. Strictly speaking there is no first step in the development of an organism, because for many animals the steps of early embryogenesis are controlled by the maternal genome, so there is no really strict demarcation between what is controlled by the parental genome, and what is under the control of the zygotic genome. This conflict is under what inspires your model used in your analysis, which is a model of a genome there at fertilization that unfolds into being the recipient of a certain potential. I think this is a metaphor that is very deeply rooted in the popular version of developmental biology which is deeply misleading, because it makes the genome the bearer of all future properties of the organism, which it is not.
Salvi: I think we cannot avoid this role of the genome in human identification. I agree that it is not clear when the individual genome starts and the parental one stops, but we may not need to really define a clear boundary.
Mauron: If we do not define a boundary in that way, we are really addressing a different question, because numerical identity is inherent in the question of identity. When an entity starts and stops. The biology shows that it is more complicated. I agree that the kind of question you pose is legitimate but it is not the same question that you start out with. We need to redefine it.
Salvi: I could not outline the history of the concept of identity in the short time, so I focused on how we can use philosophy in practical problems of identity in different levels of complexity, and I stressed the role of DNA. We need a theory to explain identity in a developed phase.
Ivanov: Thank you, the next speaker is Dr. Leavitt. Now we can open up for discussion.
Fluss: I want to add one interesting comment. I was reading about the 7th International Congress of genetics, held in Edinburgh in August, 1939. On that occasion, Warrington, Mueller, and some of the leading geneticists, developed something called the Edinburgh Charter on Genetics and Human Rights, called the Geneticist's Manifesto. I wonder if anyone has a copy of that. I think we should see if there are still lessons for today.
Ivanov: Thank you, and I think that our present session was the most contradictive of all the sessions at the conference. One of the reasons is that we have not only discussed not only the clinical research in gene therapy today, but the prospective gene therapy of tomorrow. The experience is limited, the imagination is rich, so it is one of the reasons for these contradictory opinions. It is not one of the problems of the day after tomorrow, but a question of the modernity of gene therapy, it is here at our doorstep and we have to discuss the ethics of gene therapy now. In my personal experience in genetics, I started 40 years ago, when we had nothing but crude cytogenetic analysis of manifest diseases. Today we went deeper, from preclinical to prenatal to preconceptional diagnosis, and the same issues will arise with gene therapy. We have to prepare our stage for gene therapy, we can do nothing to stop it. We hope it will be done in due time and in due place, this is important. Let me conclude with a joke. There was an author who wrote a number of erotic novels, full of sins of perversive sex, and nobody could guess how she or he could imagine such things. At last it was revealed that it was a lady author, a virgin, so lack of experience and plenty of imagination helped her in her writing. Thank you very much to all the participants.
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