p. 85 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.

Social issues in medical genetics

Keiko Nakamura,
Professor, School of Human Sciences, Waseda University, JAPAN

Until now we have had presentations on the Human Genome Project. In the rest of the seminar we will look at the ethical problems that arise. In the first session of the second day we want to talk about the social issues. I would like to clarify what we are going to discuss. When the Human Genome Project is translated into Japanese, it uses the biological word for human, "hito", so we are looking at the biological being. From the Human Genome Project we have a better understanding of the human being as a biological organism. In this case the information we are going to acquire is not about the genes of a particular person, but rather we are obtaining information about the genes of human beings in general. This is very important. On the other hand, we are going to obtain information related to the health of human beings which can be utilised for medical care. There are many specific examples. In such a case, the genes of particular individuals are going to be an issue.

In the seminar at this time, we are looking at the analysis of the human genome, and are looking at the issues of human genome analysis in society. We are now going to focus on the social issues related to human genome analysis. With the assistance of Prof. Fujiki, there are many presenters from various fields. There are so many speakers within 90 minutes, so there is only ten minutes for each person. It is quite unfortunate for us to only have ten minutes to talk. I feel sorry, so I don't want to take too much time for myself, so I will invite the presenters to begin.

Discussion

p. 118 in Human Genome Research and Society
Proceedings of the Second International Bioethics Seminar in Fukui, 20-21 March, 1992.

Nakamura: Thank you very much for your presentations. Fortunately, we can extend our discussion further. I want comment from one person on the Japanese side on how we can limit ourselves and convey the information. Is there any right to know the information, or a right not to know the information? We also need to discuss the methods for dealing with this information. From the Americans there was a presentation on how to deal with genetic information in a specific manner. If we have a discussion on these points it would be very meaningful, but unfortunately we don't have enough time. I want to have just one comment please.

Tachibana : As was mentioned by Prof. Wikler, the protest activities by disabled people has been an issue in Japan, and sometimes genetics research is attacked by some pressure groups. If you are a moderator for such a meeting what would be the best approach for such an attack?

Wikler: This is a very difficult question, that is why you asked it. Because, the people who are in these pressure groups do not want to have a conversation. They believe that there is a secret plan, by people like us, to have certain questions debated as if there were two sides worth listening to - when actually there are not. And by having these questions debated as if both sides were reasonable, you automatically give more dignity to the wrong side. Therefore their purpose is to make sure that these debates are never held in the first place. So in Europe they have refused invitations to join in the debates and to take the other side against people who are raising some of the points of view which we have heard today. So the question of how to deal with these people starts from the fact that many don't want to participate in the debate. This, however, is not the whole story. One has to ask why it is that they have the position that they do. My own personal belief is that those who are on the other side can be faulted to some degree because too often the assumption is that the people who are raising the protests are scientifically illiterate, and that their values are not worthy of consideration. Whereas, from my point of view, as I said in my talk, I believe that there is a very serious moral argument that some of them are making. Those of us who conduct such symposia, I believe, should create a condition in which the other side wants to talk by showing an appreciation for the serious moral point of view which is being expressed. Perhaps after doing that the other side will feel welcome enough to enter into a conversation rather than attempting to shut the conference's down.

Nakamura: Thank you very much. We are very sorry, but we have run out of time. What we have discussed may be worth discussing further. This is the first meeting. If we could come up with some of the agenda for future discussion that would be beneficial. Fortunately, we have had wonderful speakers. As I mentioned earlier, we have been quite successful and meaningful in providing some future items for the agenda. This will not be the end of the discussion. I hope that this discussion will further develop into a public forum. Thank you.

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