pp.96-97 in Human Genome Research and Society
Proceedings of the Second International Bioethics Seminar in Fukui, 20-21 March, 1992.

Editors: Norio Fujiki, M.D. & Darryl R.J. Macer, Ph.D.

Copyright 1992, Eubios Ethics Institute All commercial rights reserved. The copyrights for the employees of the US Government, are subject to other copyright arrangements. This publication may be reproduced for limited educational or academic use, however please enquire with Eubios Ethics Institute.

Social problems of human genetic research - a historical perspective

Shohei Yonemoto,
Laboratory of Social Life Science, Mitsubishi Kasei Institute of Life Sciences, JAPAN

Sometimes people say that I am specialised in bioethics, but in fact my speciality is in the history of science. Especially I'm interested in the eugenic policies of the Nazis, and other regimes. The first point I want to take about the information society is how information is changed and amplified. In the past scientists would only observe information and report on the factual data. In modern society, information is given as a message, and in some cases the information is distorted. In such a society what is the role of science? Also, how can human beings control the use of information in human society? We can compare the situation for modern medical genetics in some different countries.

Modern society has faced two hurdles related to modern medicine and genetics. The ethical problem of human genome mapping and gene therapy is the second. The first hurdle was the ethical problem of genetic screening and prenatal diagnosis in the 1970's, especially discussed in the USA. Beneath it was the liberalization of abortion. Abortion and prenatal diagnosis were discussed simultaneously. It is generally believed that abortion is morally painful but permissible if a severe abnormality is found in the fetus. Thus, prenatal diagnosis has been widely accepted. If one accepts the premise of the above argument, it is relatively easy to resolve the ethical problems of human genome research and gene therapy. Yet the only country among the advanced societies who did not experience a heated debate about genetic screening and prenatal diagnosis in the 1970's was Japan. In other advanced societies, genetic screening and prenatal diagnosis are regarded as measures to prevent the occurrence of congenital abnormality and genetic disease. But in Japan these technologies are thought to be rooted in "eugenic ideas" aimed at the elimination of would-be handicapped people. This difference indicates a gap between Japan and other nations concerning which aspects of "eugenics" should be avoided. With regard to Japan, the attitude which appears in Japan comes from inaccurate recognition of history and little confidence in social management.

When examined from history, the revival of eugenic ideas in the 1930's is not very significant. Now, the prevalent understanding among science historians is that it is an error to see Nazi medical policy and "eugenics" as identical. Under the Hitler regime, eugenics appeared to be a major Nazi policy, but eugenics proved responsible only for 'genetic health', a part of their complete health management program intended to increase the purity of the German population. Hitler was proud of his originality of merging state and race, and Germany deteriorated into a tyrannical and racist quasi-state. The Nazi regime has proved so unusual and grotesque an example that in present democratized societies it seems unlikely that 1930's-style eugenics could be revived.

When we saw the discussions on how to regard the issue of organ transplantation in the recent Japanese Prime Minister's Office Ad Hoc Committee on Brain Death, generally the researchers and scientists tended to be satisfied with the achievements of their research and they appear too optimistic in their interpretation of the information. Therefore some parts of society can have an over-expectation, while others can reject, such achievements. What is the role of bioethics? I think it is related to decision making, about practical results of research. This was emphasized in Prof. Yesley's paper. But in Japan decision making by individuals is becoming to be emphasized, but decision-making by a nation should be discussed more.

All over the world we are thinking of the best method of controlling scientific technology in the information societies. We have the authority to gather it, to investigate information, and the authority to make laws and political decisions. Such authority should not be laid on the professionals. We are still making an effort for third party organisations to perform this role. I think Japanese society is a society of materialism, therefore natural scientists and researchers are regarded as experts. Although they are putting their energy into developing biotechnology, they are not good at deciding how to use such technology and they don't make any investigation, into how it is going to be utilised. Therefore the technology and data can be kept so they cannot receive money for their research and manpower. What is very important from now is that we have the correct information, and make politically neutral and comprehensive reports. This is important for decision making, especially to be politically neutral.

Every ethical argument concerning human genetic research reflects a philosophical view of the genetic code, that view tends to polarize. The first is that DNA is a blueprint of our life, so that most of the human traits are written in the DNA. From this view, human genome research could be a serious invasion of privacy. The second view is that DNA engineering is only engineering of molecular components, not human character, and treats the body at the molecular level as a container for the mind. The danger of this philosophical point of view is that it could lead to a more uncritical acceptance of DNA engineering than the former. The focus of the scientific conception of life has shifted from the former to the latter viewpoint. Human genome research may imply the design of medical records that predict when individuals will become ill. So we all, the same as victims of genetic disease, must therefore be protected, especially at the level of our personal genetic information and its control.

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