pp. 437-438 in Bioethics in Asia

Editors: Norio Fujiki and Darryl R. J. Macer, Ph.D.
Eubios Ethics Institute

Copyright 2000, Eubios Ethics Institute All commercial rights reserved. This publication may be reproduced for limited educational or academic use, however please enquire with the author.

F29. The Draft Proposed WHO Guidelines and the Gaps in Information and Understanding of Medical Genetics and Genetics Services between Specialists and the General Population

Eiko Fukumoto.

Freelance Journalist, Tokyo

The revolutionary nature of life manipulating techniques not only gives new methods for diagnosis, treatment, and prevention of disease but also ties in the great changes it brings to our views of life and humanity, and social norms. And people who are affected directly by this wave of violent change are the general population. But very little information on either the state-of-art of these techniques or the draft proposed WHO guidelines gets through to the population as a whole, and I feel very apprehensive that guidelines will be drawn up and the fruits of genetic analysis will be exploited with discussion and judgments only being made by professionals and experts. I propose here:

1. We need enough time to find out about and discuss the issues.

2. Both the general population and professional groups need to thrash out in more detail whether merely the simple freedom of choice (self-determination) of the people who receive medical treatment and services can keep shut in the eugenics that gene technology connotes.

3. The people at present most worried and on their guard about eugenics are those who are handicapped. I hope that the professionals will listen to their ideas and draw on their opinions.

My understanding is that WHO "Guidelines on Ethical Issues in Medical Genetics and the Provision of Genetics Services" are due to be announced this year. Specialists in Japan expect the contents to be really the same as those of the 1995 draft, which they welcome.

However, I am very worried that this is so, and hope that WHO will put off the announcement of the guidelines for the present. My reasons I give below:

1. In Japan, the general population has been informed neither of the fact that the work of drawing up the guidelines is in progress, nor of what their contents will be.

2. The general population of Japan has been given very little information about the application of genetic techniques, especially genetic diagnosis; how far research has advanced; which diseases can actually be diagnosed; how and where these diagnoses are carried out; and what kind of ethical, legal and social problems arise out of the application of these techniques.

3. The way of thinking and general direction of the 1995 draft are far removed from the ways of thinking and views on life itself and what humans should be that people in general have debated and built up over a long time through the issues related to the handicapped, the eugenics law, sex and reproduction, and of the modification of life.

Should we apply reproductive technology to human beings? If so, then how? It is already widely acknowledged that these questions should be settled through broad discussion in society. Nevertheless, specialists in Japan have made no effort to inform the general population about genetic diagnosis and the work of WHO. Of course I am not saying that enlightenment and education of the general population by specialists are needed. I am just saying that the duty of specialists who will apply the technology is neither enlightenment nor education, but the provision of information on which to base judgments and discussion.

Genetic diagnosis is raising a lot of difficult problems; whether we can block the path leading to eugenics; whether we can accept a breakdown is privacy due to the picking-up and using of the genetic information jointly owned by; whether we can prevent an increase in discrimination against people who have a handicap or disease genes; on whether we should inform a person who is diagnosed with an incurable disease. It seems that the expert are trying to overcome such problems and draw up guidelines simply, by restricting the scope of application of the techniques to disease, by giving weight to the voluntary will of the counsellee and the free will of couples bearing a child etc. But I think that is too optimistic, and difficult to accept for most of the general population.

The effects of the norms for genetic diagnosis suggested by the draft guidelines will be enormous, especially in Japan. I think we need much more time for the specialists to give us information, and for the general public to ponder and make up their minds based on that information.

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