pp. 86-87 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 genome analysis and human rights

Tadami Chizuka,
Professor, Faculty of Letters, University of Tokyo, JAPAN

Thank you, I am not a doctor, or a scientist, but a historian. Therefore I'd like to talk on a historical viewpoint on human genome analysis and human rights. The first thing I'd like to point out is that human genome analysis must be advanced with every regard to human rights. But there are many kinds of "human rights" which are not only varied in nature but also sometimes contradictory to each other. Therefore, these various human rights should be put in order of priority, and harmony should be established between human genome analysis and human rights according to this priority order. The Human Genome Project must be done in harmony with human rights.

Human rights are acknowledged by everyone, however so-called human rights are very diversified and some contradictions can be found. For example, property rights and the right of commerce should not be left without any control because that will endanger the right to live of socially weak people. So the development of human genome analysis should be harmonised with human rights. The first thing we must do is to prioritise human rights, which we can do by looking at the history of human rights. The priority order is obvious when we consider the history of human rights. The concept of human rights was established in "Declarations of Human Rights" of the 17th and 18th centuries, in England, the American revolution in the USA, and in the French revolution. They approved three kinds of fundamental human rights: liberty, equality and property. Thereafter the importance of social rights including the "right to live" (droit d'existence) gradually became recognised. The socialism of the nineteenth century and the Russian revolution and Wiemar Constitution in Germany, first recognised social rights. Nowadays, the priority of the right to live is now widely approved as a superior right.

In 1948 at the time of the United Nations Declaration of Human Rights and in the Japanese Constitution, the right to live were granted. So the three rights, the right to live, the right of moral freedom, and the equality of rights, now have the top ranking among the human rights. Other rights, such as economic freedom and property rights are inferior to these first three fundamental rights. This should be clearly recognised.

Now we need to look at the right to live and human genome analysis. No matter how seriously diseased a person is, they have the right to live. Every human being, without the exception of the embryo, has their own right to live, even if they have genetic vulnerabilities. Induced abortion will deny the right to live of the fetus. Then it becomes very important to get the genetic information before fertilisation. With human genome analysis we will be able to get individual human genetic information. To know the genetic information of oneself, and one's spouse, and children, is therefore a matter of deep concern to one's right to live, and the right of the children to live. We have the "right to know" or the "right to refuse to know" our own genetic information. These rights should be respected as an accompanying right to the "right to live". Patient's genetic information should be given, even if there is no therapeutic remedy available, to those who demand it, by their "right to know". Doctors should give patients their genetic information.

Moral freedom in its wider sense includes freedom of speech and freedom of religion. In the field of life science, the right of moral freedom is equivalent to the right of self decision or of autonomy in the way of life. People have the right to decide how they live. According to this right, everyone can exercise their "right to know" or "right to refuse to know" their own genetic information. When people find out the possibility of some serious genetic disease, they can prepare themselves to meet it and perhaps decide to discontinue the fertilisation or decide to die peacefully. They can also exercise the right not to know, and leave it to the course of nature. This right of self-decision or autonomy is an application of the concept of "informed consent" to the announcement of genetic information. In other words, one's free will or the right of moral freedom must be respected in the field of genetic information.

Every human being is equal in their rights, although they are not equal in terms of their capabilities. Therefore, we must prevent any discrimination and isolation due to genetic information. When genetic information is known to a third party there is a danger of discrimination. The abuse of genetic information in the education system, in employment, and in the criminal justice system, should be carefully prevented. With this view, genetic information must not be given to anyone nor to any public organisation, only to the person themselves.

Property rights and economic freedom are inferior to the right to live, and therefore are able to be constrained by the right to live. The commercialisation of the products from human genetic analysis and the settlement of intellectual property rights (patents or copyrights) on genetic information must be strictly forbidden because they are no exception. It is the same as preventing the commercialisation of human organs, it needs to be outlawed.

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