pp. 64-65 in
Bioethics in Asia
Editors: Norio Fujiki and Darryl R. J. Macer, Ph.D.
Eubios Ethics Institute
Copyright 2000, Eubios Ethics Institute
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Discussion - Law and Ethics in the World
Shapiro: Thank you Mr. Fluss for your paper from WHO, and we have time for one question. I can thank you for making WHO so effective in supporting bioethics around the world, and this paper was an excellent overview.
Verma: You mentioned that you have monitored the reports from governments and other groups on human rights, what does the WHO do if the human rights codes are not followed.
Fluss: The reports are not submitted to the WHO, but reports are submitted to the United Nations treaty bodies. In the case of the Covenant on Human Economic, Social and Political Rights, the reports are submitted to the Office of the High Commissioner for processing by the Committee on Economic, Social and Political Rights. If a country does not submit its report on time, there is very little the UN can do, other than send reminders. Sometimes reports are five years late or never turn up. There is extremely little that can be done, there is no form of sanctions. The International Labour Union has other mechanisms, but there is no International Court of Justice on Economic, Social and Political Rights. Perhaps in a few decades there might be.
Shapiro: Thank you very much for your presentation, Dr. Yesley. The United States has had the most experience with the problems of genetics, and it is very important for us to assimilate from the lessons you shared. Unfortunately questions and debate can proceed in the corridors of the conference venue, as we do not have enough time.
Thank you also Judge Byk, of the International Association of Law, Ethics and Science. First I would like to point out that article 1 of the final version of the Universal Declaration does not say the genome is the common heritage specifically as the earlier versions. It was made by governments who were concerned that the previous wording would prevent patenting of human genes.
Matsuda: I agree completely with Judge Byk that privacy should be protected, but in the WHO guidelines there are some exceptions given. What do you think about the exceptions.
Byk: Genetic information raises some difficult issues of confidentiality. I do not mean here the question raised by an insurance company or employer, but simply the medical issues. It is related to the fact that the genetic information is important to the family as well, so sometimes it will be informative for other members of the family to know more about the risks that they themselves have, when another member has a test. In some European countries, like France, there is a very strict concept of medical confidentiality, but probably we need an evolution of this concept. It has been difficult to do it in the Council of Europe, new recommendations are needed on medical use of genetic data.
Leavitt: I am still considering what Mr. Shapiro said, about the words, the common heritage, in a symbolic sense. What I am concerned about is that there is a very fine line between trying to prohibit something and opening the door to allow something. I just wonder that if the revised article 1 will not encourage the further applications for patents on genes. As a Judge, please comment on them.
Byk: Symbolically it is a balance, between a strong affirmation of the importance of dignity of the human genome, and the common heritage of information that it brings for medical progress and for each of us as individual. On the other hand it does not resolve the restriction at the international level of the WIPO and WTO and at the European Level of the EU. UNESCO has no jurisdiction in this field, and also many countries now understood the necessity to promote biotechnology as an industry.
Shapiro: Thank you, Dr Mauron for some interesting ideas. I am afraid we have to go immediately onto Prof. Casabona. Thank you, and I agree that we have had a lot of philosophically and legally poor arguments around cloning, as a result of the media hype about cloning, which was used by political leaders with various motives. Could I ask, would you accept that a clone, if produced, would not be strictly identical, there would be environmentally identical. Many of the shock and horror arguments rely on genetic reductionism, that Dr Mauron also criticized. Why has there been so much fuss.
Casabona: In the case that in the future we use human cloning, there are many risks to be overcome. But I wanted to reflect on the issue, as the matter is seen as very dangerous. I would say that the techniques should only be used for human reproduction in the case when the woman has not enough ova to try normal assisted reproductive technology, so she can try to make an embryo. So the result would only be like non-zygotic twins in the natural reproduction.
Ivanov: I completely agree with you, that a clone is only a delayed monozygotic twin. They are only identical at the level of the initial genetic information. But to be identical in final expression they need to follow exactly the same route of development, which is impossible. So they never may be identical, each different persons with a full measure of human rights.
Casabona: This is also my idea.
Shapiro: Thank you, next Dr Hlaca. We have time for several questions.
Fluss: I want to make a historical comment. In 1966 we in the WHO undertook a study of abortion laws, which was published in the November 1967 issue of the American Journal of Public Health, the first European country that introduced liberal abortion laws was Republic of Spain in 1936, and in 1938, Iceland. In the Soviet Union, Lenin signed a decree around 1920 liberalizing abortion.
Pinto: You mentioned that in France 50 years ago, and in Sweden 40 years ago, the basic concepts of human rights law were implemented. The exception was Rumania because of the dictatorial regime. Could you comment on the recently revealed sterilization programs in Sweden, and I do not understand what you mean by legal abortion, does that mean one performed in a medical environment, or supported by the health system.
Hlaca: It is an interesting question, and the data on legal abortions refers to the official number of abortions reported by the Ministry of Health. There is no state in the world which has exact information on abortion, in many cases there are illegal abortions, those not reported under the law. In Croatia the legal abortions are performed free of charge, and in 1980 we had an equal number of abortions to live births of children. Sweden has an interesting approach to family relationships and social welfare, and Swedish society supports all different ways of life. Babies born out of marriage have the same rights, and they have a special law on homosexual cohabitation. It is difficult to explain why Sweden society supports such a liberal and modern approach. The data are quite strange, the birth rate is not decreasing because the state is supporting children in all situations.
Ivanov: You presented interesting data on abortions and live births. Could you tell us about contraception during the same period.
Hlaca: It was not legally forbidden to use contraception, but it seems from this data that there was a clear lack in of educational campaign, no church or NGOs was supporting family planning. The situation was tragic, as the abortion was treated as normal the same as going to the dentist.
Shapiro: Thank you, we must stop. We have two presentations that are not able to be presented in person. Prof. Ida is in Paris at the UNESCO General Conference, discussing the UNESCO Declaration as it reaches final approval. Prof. Kitagawa is also unable to be here in person. I will read the text of Prof. Ida. Let us continue discussion over the break, the amount of material was a little overwhelming, and we thank all the speakers for the thought provoking presentations.
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