pp. 32-35 in Protection of the Human Genome and Scientific Responsibility

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

Copyright 1996, Eubios Ethics Institute All commercial rights reserved. This publication may be reproduced for limited educational or academic use, however please enquire with Eubios Ethics Institute.

Tokyo Session

Five Problems of Human Genome Analysis in Japan - From a philosophical point of view

Yujiro Nakamura(
Professor, Meiji University Law School

I would like, taking this opportunity, to arrange my ideas by pointing out five problems regarding "Human Genome Analysis in Japan" and to comment on them briefly. I will move from theoretical problems to more concrete ones.

1. Animism and Reality of Human Genome

The complicated issue of brain death and organ transplants has made the Japanese people realize how firmly animism exists subconsciously within them. Opponents of the idea of brain death who insist upon "three symptoms' death" are based so often on a hidden animism. These people not only state religious reasons against brain death (religious means Buddhist in this case), but also scientific ones.

The doctrines of Buddhism themselves give little worth to a corpse. The view of the Japanese people regarding it as important is rather related to a Taoist animism passing through a Japanized Confucianism. We gradually came to understand this fact. Even those who state scientific justifications are reduced to animists' thought because they bring the strict life-death border into question, and this relation between life and death becomes paradoxically undistinguished by their endless division.

On the other hand, the reality of the human genome is of course based on the development of biological life research by modern science. The discovery of double helix of DNA in the 1950s, especially strengthened the idea of the determinism of livings things. Later in the 1980s not each gene but a genome, a set of genes, came into problem. Nevertheless today's genetic research is based on mechanistic theory - in the broad sense - of life. However, the reality of DNA and the genome has been accepted in Japan on a quite different level from that of "soul", because the Japanese people have adopted modern science rapidly and rather smoothly under the modernization of Japan after the Meiji Era with the slogan "Western knowledge, but with Japanese soul".

The different level means, not in the sense of mind-body dualism but of mind-body coexistent monism. That is to say, these two seemingly differing realities are actually accepted without contradiction, because in my opinion, many scientists and lay people here stand vaguely on this thought. However as long as they remain in this inconsistent view, the problem will be never solved and this ambiguity will be a great obstacle for human genome analysis and gene therapy in the future.

2. To What Extent is the Human Genome Privileged?

The distinction between human beings and other living things is traditionally not so clear in Japan as in the Christian world, and yet this difference at the macro level has been regarded as self-evident. However it is not so obvious at the micro level such as that of genome and of DNA. For as their outward apparent forms become more and more similar, the underlying difference becomes more and more difficult to detect. It has become more difficult to distinguish other living things, including other animals, plants and microbes, from human beings.

This view seems to be consistent with Buddhist doctrine of egalitarianism of life which finds all life to be of equal value and importance in the natural world. This view is familiar to the Japanese people and easily to be accepted by them.

On the contrary, the view that human beings are somehow privileged among all animals has been supported until now by Judeo-Christianism. The view is that God created human beings in his image and that human beings are superior due to their self-awareness. But this claim has come to be generally unacceptable with the worldwide development of the ecology movement. Also in Japan the majority does not stand against the dignity of man and the respect of human rights as their principle or public opinion, but they can not forever remain compatible with the strong thought that all living things have equal rights. Therefore, in place of the "Homo-centrism" which has been treated as self-evident, the new role and responsibility which are based on the human position in the universe has come into question .

It is not easy to give a clear-cut solution to this problem. Nevertheless, I would like to attempt to do so, as much as possible. That is retrace the timeline of birth and evolution of life in the universe, particularly on the earth, on a genetic level under the conception of Pierre Teillard de Chardin and clarify the identity, difference and relation between other organisms' genomes and the human genome. So we should see to what extent human genes have a closed relationship with other organisms' genes and are supported by them, at the same time examine how they bear their responsibility and role.

3. "Sanctuary" and Libido Sciendi

Gene therapy has been accepted by the public almost without opposition. One of the principal reasons for this is that there are limitations in regards to the manipulation of the somatic cell: the reproductive cell must not to be touched in principle by the Guidelines of Inuyama Declaration. If the recombination of genes has extended to that of the reproductive cell, the public would have strengthened its warning and recombination and therapy of somatic cell level must have thus become more difficult to do. But to what extent can we hold this "sanctuary"? It is not, of course, problem only concerning Japan, however I think that it is particularly slighted here.

One of the most representative Western grounds on this sanctuary is the theory which considers a reproductive cell as "eidoV". According to this theory, a reproductive cell has formal character, while a somatic cell has material one. Because "Divine Providence" works in formal character, a reproductive cell should be regarded as eternal sanctuary. And furthermore, we have misgivings about every worst-case scenario such as the one that contends that human beings will design and produce life themselves, if they are allowed to manipulate reproductive cells. That is Holutag's famous "Slippery slope theory". But here is where the question whether scientific research has any absolute limit comes in.

For if we reflect upon the history of science, we can see that science has been developed by the human's God-defying act. Many important scientific discoveries, in every age, were so often regarded as Satan's doings. The problem is whether the manipulation of reproductive cells is fundamentally different from the God-defying act. The greatest difference that we can imagine will consist of the lost of identity by the cell as a living thing. However, we cannot essentially distinguish it from the large scale substitution of artificial organs by the development of electronics at the nano level which many scientists are seriously attempting in the USA.

On this problem, I wish to demand that Japanese professional scientists and doctors have the consciousness that there is in the base of scientific research, the insatiable "libido sciendi" of mankind, and this is a sort of "instinct of life". However by this reasoning it is easy to turn into "instinct of death". In the case of the human genome, it touches, by that very same reasoning, the origin of life, and the problem will get more grave, therefore the professionals are required to be as prudent as possible.

4. Is It Possible for the "Right Not To Know" to Be Just?

In the case of genetic testing, like in the case of AIDS testing, when the doctor possesses specific information about a patient, is it possible to objectively consider the patient's wish to remain ignorant of that information of his or her human right? In freedom of information in general of course, also about medical treatment, the right in question was the right to know, and it has been expanding gradually. But with the development of human genome analysis and genetic testing, we should ask with regards to privacy and discrimination, whether it is possible for the right not to know to be just?

One reason this issue arises is that under the development of genetic screening, diseases which are "able to be tested" but "untreatable" have increased. There are several cases. For example, when a test subject is probably a carrier of some untreatable and/or fatal hereditary disease, the right not to know is worth assuring. And in the case where genetic screening is done without the testee's own consent, we should not inform him of the result. Another example is that when a screening has been done with a person's own consent, but he later decides that he does not wish to know the result, he has the right not to be informed of.

It is this "right not to know" which based on the privacy and self-determining right to control the circulation of information, that is in question today. when mass screenings are commonly done on people who apply for company positions, life insurance and professional licenses, the subject of one's privacy must to be considered within limits not prejudiciary to a third person's profit. In Japan, in addition to the quota system of employment for handicapped people, the government gives some subventions to businesses which are actives in the employment of the handicapped. As for life insurance, its main motives are compulsory ones, which treat risks collectively and neglect individual risks.

However, when individual health problems became common knowledge by the widespread practice of genetic screening, it comes into question whether we can hold today's way of thinking or not. It is indeed suffering for a person to know something they do not to know, and to be confronted with a new hardship as a result of this knowledge. Therefore, we cannot force the knowledge upon him, but if he overcomes this hardship, he will most likely gain a new perspective on happiness and human right.

5. Gap Between Family - Communitarianism and Individualism

A remarkable difference between general medical diagnoses and genetic diagnosis exists in the fact that the former is almost always geared toward the individual and the latter has some extension beyond the individual into consanguinity, including the parent-child relationship and the sibling relationship. In other words, if we gain a certain person's genetic information, it is also possible to know the genetic information of persons who are related to him. If a person is the carrier of some genetic disease, it is highly possible that his family and relatives are carriers of the same disease. Therefore, this kind of diagnosis causes his family and relatives serious distress especially if the genetic disease is serious and untreatable.

More concretely speaking, this kind of medical information not only greatly influences the family planning of a couple themselves, but also their blood relatives. Therefore it is natural that the test subject might want to keep withheld this diagnosis from his spouse, family and relatives. In this case there arises the problem of how we should mediate his "right to keep secret" with their "right to know" it.

However, a large problem now comes to the fore front; that is that the family-community principle still remains blatantly strong despite the process of modernization of Japan, which has aimed at the independence and the liberation of individuals. Generally speaking, the tendency towards family and community-oriented, encouraged by human genome analysis and gene therapy, will shift from "individual therapy" to a "family-and-future-generation oriented" one. However, it is rather necessary in that shift in Japan, not to slight the principles of individual will, responsibility and self-determination.

Besides in Japan people often think that "genetic defects are shameful", and the blood gathering, which makes family-relative research base, is sometimes prevented by some "force to keep the facts secret". Formerly, "fox possessed" families had been discriminated against. If we think about this past, there is yet the possibility to put into confusion the objective scientific facts by means of some magical ideas.

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