Editors: Norio Fujiki, M.D. & Darryl R.J. Macer, Ph.D.
Chief, Laboratory of Life Science, Mitsubishi-Kasei Institute of Life Sciences, Tokyo, JAPAN
When starting a full world-wide project on human genome research, it is critical to examine the possibility of the resurgence of eugenics, and I am grateful to the scholars who not missing this chance have organised such a major international conference. I discuss briefly, firstly the historical background of eugenics, secondly the philosophical implications of human genome research, and thirdly the specific condition of Japanese human genetics research.
As a historian of eugenics, I will first examine whether the fear of a renewal of 1930s-style eugenics is realistic. In addition to Nazi eugenics policy in 1930s, the most influential and notorious, there were also other eugenic policies, like the enactment of sterilization statutes and the Immigration Act in the US during the 1920s. To elucidate why eugenic policies were prevalent at the beginning of this century, it is important to examine both general historical trends and specific situations.
After the latter half of 19th century, the long-standing Western world view had fallen into crisis, mainly because of the appearance of Darwinian evolution theory. Among philosophical alternatives addressing this crisis of Christian world view, 'Scientific Naturalism', a term coined by an English historian, was an influential ideology. It claimed that natural science, including evolution theory, having contributed to the decline of the old world view, could itself become a proper basis for both understanding and evaluating the world. Intellectuals were inspired by this to connect human beings and society directly with biological principles. This is how, from the end of the 19th to the beginning of the 20th century, natural sciences became an important part of the Western value system and is the reason why Social Darwinism was so prevalent at that time. Eugenics was born as an offspring of Social Darwinism that strictly applied Darwinian theory to human society, and developed into scientific social policy.
On the new continent, in American society, there was a tendency to accept the implication of scientific theories as common social authority. Such a naturalistic way of thinking led to an acceptance of genetic determinism, and the pragmatic outlook that any knowledge attained should serve human welfare. This served as a fundamental justification for the ideology of eugenic sterilization statutes and the restriction of immigration based on IQ score in 1920s.
The current academic debate over Nazi medical practices is related to eugenics. During the thirty five years after World War II, the subject of Nazi medicine was taboo. Since 1980, however, substantial research has been conducted by medical historians. As a result, the evaluation of Nazi medical policy has been revised. Now, the prevalent understanding is that it is an error to see Nazi medical policy and "eugenics" as identical. Before being controlled by Hitler, both the German government and the medical profession were cautious about eugenic sterilization. However, after obtaining power this changed under the Hitler regime, eugenics appeared to be a major Nazi policy, but in reality it proved responsible only for 'genetic health', a part of the complete health management program intended to increase as much as possible the pure German population. Hitler was proud of his originality in merging state and race, and Germany quickly deteriorated into a tyrannical and racist quasi-state. But this quasi-state, with its ultimate purpose in the increase of one specific race, in order to attain its ends turned to thorough supervision of all its criteria including their genetic quality. I call this a "suprahealth control state".
Until the beginning of the 1950s, Japanese health policy was focused on infectious disease and poor nutrition while other developed countries confronted chronic diseases. So there was no opportunity to come to grips seriously with genetic disease policy as government policy to seek genetic related cures. Certainly, in Japan a eugenics law was passed in 1940, the National Eugenics Act, which was a translation of the German 1934 Genetic Disease Prevention Law. But the Japanese version was never implemented or enforced, and engendered no controversy. After World War II, in 1948, the Diet amended the law and changed its name to the Eugenic Prevention Law. This law, which allows abortion when the health of the mother is endangered and in the case of economic distress, continues to be enforced.
In the pre-War period, the Japanese government repeatedly promoted the racial superiority of the Japanese, but health policy was directed at insuring basic health needs and not at racial purity. In Korea, Japanese expansionists forced the Koreans to live like Japanese, to speak Japanese, and to take Japanese names, insisting 'same written letters same race', but they did not measure racial traits. In Manchuria, Unit 731 did systematic human experimentation with the specific aim of developing biological weapons, in contrast to Nazi human experimentation in concentration camps, which was a byproduct of racial extermination. Both are deplorable, but distinguishable with regard to motives. These examples show that political ideologies in pre-War Japan and Nazi Germany were very different, with Japan as a late-coming imperialist power and Hitler's Germany as a brutal and radical racist state. Today, there are various Japanese right-wing groups, but they are mostly concerned with the Emperor system and anti-communism, and not at all interested in eugenics.
The Nazi regime has proved so unusual and grotesque an example that in present democratized and information-oriented societies it seems unlikely that narrowly defined 1930s-style eugenics could be revived. But, racial discrimination never fades away, and is still around us in many forms today, so it is a good time to review the UNESCO Statement on Race in light of recent developments in genetic research. The difficulty in discussing the problems involved in human gene research is that differences in philosophical views are rejected greatly in the evaluation of latent dangers lying at the end of the research.
2. Implications of human genome research
Every ethical argument concerning human genetic research reflects a philosophical view of the genetic code. These views lend to polarize. The first is that DNA is a blueprint of our life, such that all human traits are written in the DNA. From this view, human genome research could be a serious invasion of privacy, and we may have to call off all research at an early stage. This viewpoint implies genetic determinism, which may lead to a sort of DNA fetishism. From this viewpoint, the fear is often voiced that once genetic research is allowed, it will lead to a nightmare scenario, the reconstruction of human genetics in order to obtain superior individuals. In common usage the term "eugenics" implies such behaviour.
The second view is that all we can say at present is that DNA determines only protein structure and its regulation. Everything else is unclear. This view appears more liberal because almost all human traits are determined epigenetically, and so it greatly reduces the importance of DNA to our actual lives. From this point of view gene decoding, if we can exclude dealing with disease causing genes, does not require particular ethical consideration. It implies 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. While from the former standpoint DNA manipulation is manipulation of the person, and from this philosophy to try and improve people would be one kind of such conviction. The danger of this philosophical point of view is that it could lead to a more uncritical acceptance of DNA engineering than the former. Consequently other types of eugenics experiments, like human improvement at the level of DNA, are more easily considered.
During the past twenty years the focus of the scientific conception of life has shifted from the former to the latter viewpoint. The setting for this change has been the development of molecular biology. As the focus of molecular biology changed from viruses to higher animals, the analogy of DNA as the blueprint of life, which existed during the earlier period, was unable to survive in the latter as the impossibility of applying it directly to higher animals became clear of itself.
"Eugenics" as an academic concept entails the prevention of the increase of abnormal genes or their positive elimination from the human genetic pool. However, in order to change gene frequencies in the human race, a huge hybrid species, it would be necessary to adhere to one eugenic policy for many generations. If one generation is thirty years, it is clear that no political authority exists that can sustain this sort of policy. Furthermore DNA is not a passive entity as classical genetics imagined but extremely dynamic, hence engineering to control morbid genes would be a futile effort.
Despite the futility, however, there have been and could be in the future, severe consequences for those considered genetically undesirable. For example, Nazis displayed films of parents said to have to killed their genetically diseased children, and end to justify the persecution of the genetically ill, and human genome mapping may imply the design of medical records that predict when individuals will become ill. Victims of genetic disease and personal genetic information must therefore be protected. Already some movement to this ends is taking place but I would recommend that an international committee should be established to make a statement, such as the UNESCO Statement on Race, and write guidelines on human genetic information, concerning the meaning of genetic codes and genetic traits, the access and control of individual genetic information, the abolition of discrimination against victims of genetic disease, the prohibition of manipulating human DNA except in the case of therapeutic applications, education regarding human genetics, and the limitation of governmental intervention. The last, however, may be inconsistent with the Chinese 1980 Constitution, which declares that people must pay attention to eugenics aspects.
There is already overwhelming fundamental agreement that the manipulation of human genetic traits is unethical. For instance, the recommendations (No.934, 1982) of The Council of Europe explicitly recognize a right to genetic inheritance without artificial interference in the European Convention on Human Rights. The Embryo Protection Law enacted in the German Federal Parliament 1990 made the genetic manipulation of human germ lines and embryos illegal.
There are two reasons why genetic manipulation should be prohibited; one religious and ethical (human DNA is special); the other legal (we do not have the right to control the genetic profile of our descendants). In the case of the descendants of patients, prevention of genetic disease will be controlled by genetic screening and prenatal diagnosis.
I strongly believe that the non-therapeutic application of human genetic engineering should be strictly prohibited. In the long term, we will have to establish the range of symptoms of genetic disease that are appropriate for genetic therapy. As a basic principle, we need an ethical rule that makes a sharp distinction between therapeutic and cosmetic non-therapeutic applications.
In a broad sense, the scientific community must try with candor to shape the achievements of modern biology and future technology for the sake of society. Today's scientific community, in contrast to the past generation of researchers, believes that it can predict the possible achievements of scientific technology rather precisely. From the best of motives, researchers often overestimate their results and the future impact of their own research, and hence also outsiders often exaggerate the results of experimentation. When we discuss genetic research, we are often caught in this trap and therefore give unrealistic hope to the victim of genetic disease. This exaggeration also creates fear of genetic engineering in groups inherently critical of genetic manipulation. Our responsibility is to correct for ourselves this over-inflated picture of the future and turn our energies to discussion of legitimate topics. 3. The present situation in Japan
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 1970s. Beneath it lies 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 and even included in health policies. If one accepts the premise of the above argument, it is relatively easy to resolve the ethical problems of genome research and gene therapy. In the study of genetic disease, prenatal diagnosis occurred far before gene therapy. Most of the measures to prevent genetic disease should be in accord with established guidelines of prenatal diagnosis.
Yet only Japan among the advanced societies didn't experience heated debate about genetic screening and prenatal diagnosis in the 1970s. In other advanced societies, genetic screening and prenatal diagnosis are regarded as one way 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, and amniocentesis was conducted only 5000 times last year. This difference indicates a gap between Japan and other nations concerning which aspects of eugenic should be avoided. In the Japanese view, policies of prenatal diagnosis in Western countries seem too secularized and pragmatic.
In Japan, compared to other advanced societies, biomedical technologies tend to be viewed sceptically. This is a sharp contrast to the general acceptance of new technology in Japan. Ethical argumentation will clarify the type of value system we rely on. If all advanced countries are moving towards a unified technological society, this means that technology does alter cultural values. The most important factor, however, is cultural judgement. The guidelines and protocols that I introduced are minimal moral standards which must be considered when applying new technology. Cultural factors are crucial in the acceptance of genetic technology in a given society.
Japanese society, including the medical profession, has avoided the discussion of ethical problems caused by advanced bio-medical technologies. The development of ethic committee systems is still in its infancy. While Japan has become a typical information-oriented society, the veil of privacy appears thin in daily life. One factor facilitating the development of ethics committee systems is the international search for universal guidelines governing genetic technology. Problems concerning the conflict between medical technology and cultural values and the gap between international guidelines and individual cultures require further study.
To confront the issues raised by DNA research, we must fight the temptation to accept the validity of scientific technology, and we need a strong sense of ethics and firm beliefs. In this way, we can gain time to discuss the problems and seek common international guidelines. At the same time we must make an effort to clarify the moral standards of various societies and cultivate mutual understanding. I believe that we can also resolve the general fears of most people without simple compromises.