pp. 88-89 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.

Human rights and medical genetics

Takashi Tachibana,
Science Commentator, Tokyo, JAPAN

As to the specific points, they have been mentioned in other papers. Therefore I would like to focus my paper on general issues. This is related to the presentation of Prof. Chizuka on human rights. We have to have a good balance between human rights with some other issues.

In yesterday's discussion we discussed the various values in society that have to be equally respected. A common basis for society should be sought. Where is this basis? In the past there was God, and God gave us a common basis for ethics, but in a society that does not recognise God where can we seek such a common basis in ethics? In the past the legal system provided a basis. The philosophy behind this was to keep agreements with binding power, "Consensus facit legem". This is the principle that law has come up with. That is the basis of Western society as a contract society. In bioethics, informed consent is discussed very often, because informed consent is based on this principle. This is the condition on which informed consent is formed. Under this agreement, informed consent is achieved among the two parties. Therefore, this is not only the relationship between doctors and patients, but it should also be expanded to the comprehensive issues of ethics. When we talk about the issue of brain death, society is on one hand and the medical profession is on the other, and informed consent is not obtained between these two parties. This is the problem.

In this case, on one hand there is the science of the Human Genome Project, and the other hand society, the other party, there should be informed consent. The elements of this informed consent include the need for open and public discussion of the issues , and for the information to be given by the scientists. Society needs to have a great interest, and to seek for the explanation of the problems, and they need to have discussion between scientists and society. This is essential in order to have informed consent. This is the ideal, and in this type of society professionals could say to the public that they don't need to worry about it, and no one will take advantage of you. But in reality, many things happen and many people will take advantage of the situation. So, we have to think of the worst case in our estimation and have preventive measures for such a worst case. Therefore, we will put restrictions on scientists, who will say that the restrictions are too severe and object. In molecular biology, an example of this was the Asilomar Conference, where scientists self-imposed restrictions on themselves, on research using recombinant DNA techniques. At that time, this was the point of issue. They put severe limitations on the experiments. However, after looking at the safety of recombinant DNA the measures could be loosened. At the Asilomar Conference in California this principle was adopted, and we can apply it to other areas. I think we should adopt and follow this basic principle.

So after taking such steps, we have to think whether any type of agreement can be an ethical agreement. Of course there are some basic limits on what type of agreement can be reached. There is a basic law that you should not kill, or steal, and all agree. And if there we alternative laws saying that you could kill or steal, such a society could never last. There is a natural law, and the agreement should not be contrary to natural law.

What is natural law? It is the principles that can be agreed on by everyone, because it is based on natural human emotion. If it is applied to the ethical issues, and based upon the natural feelings of people, without any other reason people can think that only one thing is good and another bad, this is natural. But natural ethical emotions can be divided into two categories. On one hand it is dominated by genes, the genes that control natural ethical feelings and on the other hand by culture and customs which influence the natural ethical feelings of human beings. Therefore, a combination of genetic and environmental factors will make the natural ethical feelings. There is no solution to the question of how important either influence is.

However, when the time comes that we are able to genetically manipulate such genes, we should not manipulate the genes that are involved in the natural intuitive feelings of human beings. Because we would make mistakes, such as pursuit of pleasure. When human beings are satisfied they feel pleasure. I think this is one of the feelings that is controlled by genes, and is opposed to ethics. So if we follow the principles of pleasant feeling and seek our own comfort and pleasure, it is not directly related to ethics.

When we talk about human rights, basically speaking we will try to defend our own territory. But when we are talking about ethics, part of the natural ethical feeling is to restrict personal profit and sacrifice ourselves for public profit. This is a very natural ethical feeling, self-sacrifice. For us to follow the conduct of self-sacrifice would improve people a great deal. We should suppress personal desire and offer ourselves for public profit. What is defined as public profit, or comfort, or advantage, was for the community or society or nation in the past, but in the new sense of today, the public means for human beings, the human race or the human species. So when we seek for the profit of the public, we will do this within the limits so that we do not interfere with the rights of other people. This attitude is also important when talking of the Human Genome Project.

There is the issue of the human gene pool. The human gene pool is a common asset for human beings and the basis for the existence of human beings. We should not interfere with this when we deal with genes. When seeking for the profit of human beings as a whole, this is considered to be the public. However, what we have learnt from our genes is that human beings are one of the living organisms, and that human beings only can exist supported by other living organisms. All living organisms need to have a natural environment, and this should be considered to be something public. Therefore the environmental problems have been given higher status in society and this is also a very important issue today.

So when we consider the public with whom we have to be involved, we have to have a good balance between public and self. We have to make restrictions because of respect for human rights. This is the most important principle we must follow.

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