6.8. Gaps Between East and West have been Filled

p. 110 in Bioethics and the Impact of Human Genome Research in the 21st Century

Author: Hiraku Takebe (HUGO Ethics Committee; Japan )

Editors: Norio Fujiki, Masakatu Sudo, and Darryl R. J. Macer
Eubios Ethics Institute

Copyright 2001, Eubios Ethics Institute All commercial rights reserved. This publication may be reproduced for limited educational or academic use, however please enquire with the author.
It was announced in June 2000 that the basic nucleotide sequence of the human genome had been decoded. While this in itself will not immediately revolutionize medicine, this declaration that decoding was complete, coming as it did nearly five years ahead of the original schedule, reflects the eagerness in the business community. Already the R&D competition has moved on to the next stage, and the race to find and analyze SNPs (single nucleotide polymorphisms) has already started. In Japan too, which was left behind in the sequencing race, the Science and Technology Agency (STA) is planning a major effort analyzing SNPs in the Japanese population.

While human genome analysis has told us the sequence of the 3 billion or so bases (adenine, guanine, cytosine, thymine) that make up the human genome, it is still not known what most parts actually do. However, in SNP analysis, by comparing the differences in a number of DNA sequences for many people, even if the gene itself has not yet been discovered or there are a number of genes involved, when a relation to a particular disease (say hypertension) is found , it is anticipated that it will be possible to discover early those with this predisposition, and by suitable guidance on life-style, prevent the appearance of symptoms, or reduce their severity. However, there are many genetic diseases for which even if diagnosis is possible, there is absolutely no treatment, also all the genetic information of an individual is shared with a certain probability by their blood relatives. How do deal with these and other situations is an example of the problems requiring ethical judgment that have been raised.

It was in 1992 that the Ethics Committee was established in the Human Genome Organization HUGO, and I have served as a member from the beginning, being currently one of the co-chairpersons. During the first several years of the Committee's activity all the members except me were from the so-called Western advanced countries, with a Judeo-Christian cultural background, and much of the debate sounded strange to my ears. This was only natural as the analysis of the human genome has been carried out mainly in these countries. But as we discussed the ethics related to human genome analysis we began to realize that we have to deal with the problems faced in the developing countries as well. When China was criticized by the International Genetics Federation for drafting a law apparently forcing abortion of genetically handicapped fetuses, the Committee invited a representative from China to discuss the matter. Through such experiences the HUGO ethics Committee came to propose the invitation of members from China, India, Mexico and Oman, a proposal to which the HUGO Council agreed. Now we can claim that the Committee is made of delegates representing over half the world's population who discuss the ethics surrounding the "human" genome. Discussion on the Committee has convinced us that ethical standards should be universal, although there may be many apparent differences.

In Japan too, the Ministry of Health and Welfare and the Science and Agency have at last recently set up Committees to debate ethical problems, and discussion is under way. However it is worrying that their planned guidelines differ on many points to the standard of those announced to date by international organizations. A concrete example is the provision that as the genetic data on an individual is their own confidential information, it may not be revealed to blood relatives without the individual's consent, which I think is contrary to the principles of genetics. Internationally, in principle blood relatives would be informed. Another serious problem is the lack of any call for improvement to the extreme deficiencies in education on human genetics in Japan at all levels and first and foremost in medicine. To try and make some small contribution to this state of affairs, the Japan Society of Familial Cancer Research, of which I am a member, after about 4 years of debate published its guidelines in June 2000. We want to put these into practical application, if necessary revising them annually, to demonstrate ethical guidelines on genetic analysis that is suited to the present situation in Japan.

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