pp. 461-464 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 for Fukui Symposium

Fujiki: We welcome you here today. I first invite Prof. Sudo to open the Symposium. Next we ask Prof. Kuriyama, to outline the series of seminars in Fukui, then Mr. Iwamoto from the Ministry of Education, Science, Culture and Sports to give a message. I would invite Dr. Boulyjenkov to give the opening lecture, and Dr. Wertz to explain the need for the guidelines and outline the guidelines. This afternoon we will have comments from Japanese and overseas commentators, but now we have to proceed to the panel discussion.

Boulyjenkov: Thank you very much, and I will introduce the panelists, Profs. Roberts, Ivanov, Penchaszedeh, Dudas, Matsuda, and Neizel. It is my pleasure to introduce my co-chair, Prof. Verma to make a summary. He is a member of the WHO Advisory Panel on Human Genetics.

Verma: Our first speaker, Prof. Roberts discussed the insurance companies in the UK. He gave the good news that the insurance companies will not use genetic testing to determine the risk of an individual for the next two years. They have kept their options open, so that they might do in the future. Generally the world seems to agree that insurance companies should not use the genetic tests. The genetic testing of children is always controversial, though I have sometimes read that the British Society of Clinical Genetics has said that children should not be tested until adult. But why do we differentiate. If you have a disease like menningcoccal meningitis in the family, if you look at the other children you will see that they are at risk, and you could use some preventive approach so that they do not get meningitis. Why do we differentiate when its a question of genetic disease in the other siblings? I think the problem arises not for children, but for predictive testing there is a big role of the environment. You can argue that if we can find a predisposed individual you can alter risk by changing diet. The second speaker Dr. Ivanov, gave us a lucid description of genetics in Russia, which is fairly well developed. Prof. Penchaszedeh gave us a description of genetic services in Latin America, which appear to be very similar to the situation in other developing countries with the poverty, lack of resources, lack of trained manpower. The remedies he suggested are useful for all countries. Dr. Dudas touched on the issue of primary prevention which would be preferable to secondary prevention, because it bypasses abortion. However there is only available data for a few disorders, like neurotubal defects raise the issue of the woman taking folic acid before pregnancy. That is one handicap in getting the information to the people, and the approach being used in the UK or USA is fortifying the wheat flour. This has even greater application in developing countries where it can be more common to be deficient. Data from countries with a low incidence, like Africa, are now reporting higher incidence. Probably because earlier data was incomplete. However, still it seems that 30% are not preventable by folic acid as shown by MRC trial. Other vitamins, like inositol have been shown to be effective in the Curly-Tail mouse model. We still need more research. Prof. Matsuda described his survey in Japan. I am very surprised that while Japan looks very progressive, in their approach to abortion they still do not have a law for genetic reasons. He described some of the reasons. Dr. Neizel gave us outline of the proposed guidelines from Germany. It seemed a very sensible approach, keeping in vie their historical misuse of eugenics. They put genetics back in all countries. We have not completely got rid of that idea, and all geneticists need to work on this. I close my remarks.

Boulyjenkov: Thank you, I would like to ask Profs. Verma and Fujiki to chair the next session on opinion surveys.

Verma: Thank you, Profs. J. Singh, Kang, Takebe, Wertz, Fujiki, for your papers. Unfortunately time is too short, and we must break for lunch.

Fujiki: The afternoon session will be chaired by Prof. Takebe.

Takebe: This session on Ethics of Medical Genetics in Japan, and we have nine papers, and we have discussion later if time permits. Thank you, Profs. Nakagome, Kondo, Fukushima, Satoh. The next chairperson is Prof. Matsuda.

Matsuda: Thank you, Prof. Suzumori, Prof. Osawa, Dr. Tsunematsu, Dr. Tamai, and Ms. Fukumoto.

Fujiki: Concerning Ms. Fukumotofs paper we should note that these are the draft guideline, and this is not yet the final decision to have the legal guidelines. Dr. Boulyjenkov discussed the history of these proposed guidelines, in which we should note that it is always revised several times, through committees and working groups. Although there is some gap between scientists and the general public, but we try to make closer communication and to have better guidelines. Mrs. Nobe, President of the Parents Association of Persons with Congenital Abnormalities of the Extremities, has given some written comments on these draft guidelines, enclosed in the proceedings.

Matsuda: We have several minutes for comments.

Wertz: I would like to say in response to Ms Fukumotofs first point, that the general public in most nations has not been informed about these proposed guidelines. Certainly not in the United States, and in most nations the guidelines will be mediated through the public health service in that nation. The public should be listening to the interpretation of these guidelines by the health services in their particular nation. This will make the difference. I completely agree with your second point, that the public has been given little information about genetics and ELSI problems, and I do not agree that the guidelines are removed from the way people feel about reproduction. At every point we tried to involve consumer groups in decision making.

Boulyjenkov: One of the roles of WHO is to provide information and initiate discussions on ethical issues in medical genetics. We think these guidelines could be prepared by national genetics societies, who in turn would educate the general population. The national societies would therefore support dialogue on genetics between professionals, the public and interested persons. This approach could also give rise to ideas on modern genetic techniques, and how they may best be used for health improvement.

Matsuda: The main purpose of these proposed guidelines are the protection of the patient and their family, and to protect those who are treated unethically. Then the next session will be chaired by Prof. Macer.

Macer: Thank you very much to the nine Japanese commentators who were exemplary in restricting what they said to the time given, and we now have the perspectives from international commentators. Thank you, Drs. Crawley, Leavitt, Fluss, Kishore, I.P. Singh. We now have five minutes for questions, and I would like to take questions from the floor not the panel.

Miyasaka: One of the issues raised in this symposium is that of patenting genes. Is there a consensus on patenting genes in the WHO?

Fluss: The WHO has not addressed the issue of patenting of genes. We have had a number of requests for a position, but we have not yet made a position. The International Council of Scientific Unions has issued a precise statement, which I can give details of.

Shirai: Rather than a question, I want to make a comment. As Ms. Fukumoto and others have said, we should think of this problem based on the life view or medical situation. I think the WHO also says this. Prof. Wertz also included this in her comment, that these are guidelines of a specialist. We have heard the opinions of many specialized persons, I would have liked more general discussion.

Macer: Thank you very much, are there any further questions.

Osawa: From the standpoint of a pediatrician I agreed with the opinion of Dr. Leavitt, and there is one thing I could not present today. I am very reflective about the use of presymptomatic diagnosis. The reason is that the stage from birth to three years of age is a very important period, for the parents and child to make very good relationships with each other. If the parents have some information that the patient might suffer from the disease in the future, I am not sure, but there might be some difficulties to make smooth relationships. So I have one concern about the description in the guidelines, that prenatal diagnosis can be used as a preparation to accept diseased children. But if the target disease is intractable I do not think it is good to do the screening, even if it is necessary to prepare to accept children. From the standpoint of a pediatrician, when I look at the relationship between parents and children, I really feel, it is really important for the parents to accept the baby as a happy baby.

Qiu: I would like to talk about some conceptual issues on the proposed guidelines, rather than a linguistic issue. My question is to Dr. Wertz or others; according to the guidelines you distinguish eugenics from medical genetics. But on p.4 in the guidelines you use the word positive eugenics. But you distinguish from negative eugenics? Do you still use this word? Because if you use negative eugenics you cannot distinguish genetics from eugenics?

Wertz: This is probably the first issue that we will take up in Geneva in December, 1997, in the discussion of the guidelines. We received comments from Dr. Mariko and Kunio Tamai on this issue, and from other sources. We cannot avoid discussion of whether genetics involves eugenics, and I think we must define eugenics. If we define eugenics as a coercive government program then we can say genetic services are not a coercive government program. If you define eugenics as any activity that prevents the birth of children with disabilities, then a lot of genetics is involved with the prevention of these births. People in the Disability Rights Movement are very sensitive to this. We will have to define eugenics, and the role of medical genetics with regard to disability, and we will have to point out I think, that preventing births of children with disability is not saying anything negative about living children with disability, who can and should receive services.

Kishore: I have a question to Prof. Roberts, on what is the justification in the UK, for not allowing the children born out of donated gametes to know their genetic identity, while such a right has been granted on even the children who have been adopted.

Roberts: I am sorry I cannot answer this question. It may derive from history. Only recently has an adopted child been able to trace its history. With regard to donated gametes, the donors are giving under the condition of anonymity.

Kishore: This is my concern, because no one has been able to answer this question. The children born out of donated gametes have been totally deprived to know about their genetic origin.

Macer: Thank you, we must move onto the summary by Prof. Matsuda.

Matsuda: I am going to summarize the first session of the afternoon. Prof. Nakagome gave a short history of the JSHG, and he also emphasized the necessity of genetics research, also ethical issues, and education in genetics of citizens. Prof. Kondo pointed out the responsibility of the mass media, especially in regard to medical genetics. Prof. Fukushima who translated the draft proposed WHO guidelines into Japanese, received a similar comment from the readers, and he introduced these. He also introduced his experience of genetic counseling in Shinshu University Medical School. It is a unique position in Japan. Prof. Satoh introduced assisted reproductive technology, and Prof. Suzumori introduced preimplantation diagnosis. He pointed out the benefits of these techniques, and compared to prenatal diagnosis, also the high costs, discussed its efficiency and limited availability. Prof. Osawa introduced responses of muscular dystrophy patient parents who received prenatal diagnosis. All of them seems very reasonable and understandable. Dr. Tsunematsu discussed guidelines on testing familial cancer, both the techniques and ethics are very important for discussion. She said many people, not only specialist, but also ethicist and public are involved in making these guidelines. In 1998 a final code will be proposed. Dr. Tamai, the president of the JSDS, said that he organized half of the parents of Down syndrome children. His special concern was triple marker tests for screening, and he pointed out the current unacceptable situation of this testing. Ms. Fukumoto tried to point out the responsibility of the specialist. My conclusion is that not only we should promote new technology but find the most rational way to use it.

Macer: Thank you, and I have been asked to give a summary of the papers from the international session, so I am going to focus on two points. Today has seen 40 people give formal presentations and little time for others to ask questions in the symposium sessions. The proceedings will be published with the full papers, and we welcome written comments from all others present on the topics presented. Please ensure that these arrive as soon as possible, and they will be considered by the WHO group.

I hope you all can take a few new ideas back home now, with more after time for digestion. I want to return to two points as a summary. First please consider the results of survey questions on approval of fetal diagnosis by different groups in Japan in the Figure below. With collaborators I have surveyed the public, students, academics, members of Japan Association of Bioethics (Academic 1995), doctors, nurses in Fukui, biology teachers, scientists; and presented results with Dr. Hisanobu Kaiya of surveys among members of the muscular dystrophy association, in 1992 and 1995, patients and families. The most supportive group is the families with muscular dystrophy, and the least supportive, members of Japan Association of Bioethics. Who should decide public policy? Because their views differ the results may be different.

International surveys follow similar support levels. The first point is how to give informed choice to mothers and families with what WHO calls genetic abortion?

The second figure is taken from the data of the Eurobarometer survey on attitudes to biotechnology that I conducted in 1997 (see poster at ABC). The question, "Do you think each of the following characteristics is mainly inherited or mainly the result of upbringing and living conditions?". The second point is seen in the results, the public may still be able to distinguish genetic and environmental factors, for example athletic ability is seen as genetic; while happiness, homosexuality, work attitude, are seen as more environmental. How can we ensure that this continues?

How people use genetic tests for non-disease traits will depend on these attitudes, unless which is unlikely, uninhibited access is controlled. We can urge authorities to limit medical use, but most people spend more money on cosmetics, and aesthetics, than their health - a universal problem.

Fujiki: Thank you, now we turn the chairmanship to Prof. Ueda.

Ueda: Thank you for your talk Judge Byk. Dr. Boulyjenkov, Fujiki and then myself will give closing addresses.

Please send comments to Email < d.macer@unescobkk.org >.

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