pp. 394-295 in
Bioethics in Asia
Editors: Norio Fujiki and Darryl R. J. Macer, Ph.D.
Eubios Ethics Institute
Copyright 2000, Eubios Ethics Institute
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F12. Background of the proposed guidelines for genetic counselling and testing in Japan
Kumamoto University School of Medicine, Kumamoto
In 1948, three years after the end of the Second World War, the Eugenic Protection Law was promulgated in Japan. The law is deeply coloured by pre-war eugenic thinking and it even perimitted the compulsion of eugenic surgery on specific individuals on request by a doctor (However, this has not been carried out since 1990 from a doctorfs request). Under this law, legal abortion is permitted only if a family member has one of approximately 30 listed disorders, in which genetic diseases are not included. Fetal inborn error in itself was not legal grounds for an abortion: Most abortions done after prenatal diagnosis has been performed for socio-economical reasons.
In recent years people have felt eugenic ideas to be dangerous, and in particular the clause in the Eugenic Protection Law, gThis law, from the standpoint of euegnics will prevent the birth of inferior progrenyh, and called for its revision. In 1996, the law was revised to become the Maternal Protection Law, and all eugenics was excluded. However, scientific progress, such as genetic test, gene analysis, prenatal diagnosis, in vitro fertilization and so on were given no attention, and genetic reasons for abortion are not touched on at all. Abortion is still done only for socio-economical reasons. In 1997, the Ministry of Health and Welfare established a Committee for Advances in Medical Technology Assessment in the section of Health Science Council where biomedical ethics, including that of reproductive medicine, is to be discussed. Guidelines for genetic counselling and prenatal diagnosis (1994) and guidelines for genetic testing, using DNA analysis (1995) were set up by the Japan Society of Human Genetics. The context of the guideline is similar to that proposed by WHO (1996), as introduced by Dr. D. Wertz et al. There are three main approaches; (1) prenatal diagnosis will be made on a voluntary basis only, (2) disclosure of genetic information, when necessary to avoid serious injury to other family members, must follow the judgment of the ethics committee of each institute, not that of the individual attending physician, (3) abortion in the 3rd trimester, for genetic disorders is illegal in Japan. The response to genetic testing at present among the general Japanese population is most important and the issues in question should be discussed openly and in detail.
I would also like to present the results of a survey I have conducted, which shows how the Japanese people view genetic tests. We have had replied from one thousand people between 20-50 years old, and still continue. Recently we opened a home page and more people can access it. 47% of replies were from medical practitioners (medical students, doctors and nurses, etc.) and 53% from the general public. 95% of the medical workers were aware of prenatal diagnosis and 74% of the public. This was the only question for which there was a significant difference between the groups, so for the rest of the questions I combine the results.
89% replied that genetic counseling during pregnancy was necessary. 93% would want to have a genetic test if there was a danger that the fetus had a genetic disease. 93% would want to give birth if that disease was light and treatable. If the disease was serious and there was little hope of treatment, 17% thought that they would give birth, 39% said they would want an abortion and 49% were undecided. Concerning abortion, 14% were absolutely against it, 44% thought it was up to the mother to decide, and 42% did not know whether to leave it to the mother. Concerning carrying out abortions, 25% thought that there should be provisions concerning the fetus, 69% thought that more debate was needed before altering the law, and 6% thought that there was no need for change.
In summary, genetic counseling is necessary and among the choices should be the offer of prenatal diagnosis. Concerning abortion a number of choices should be provided, with the decision left to the family, and ultimately the woman involved. About 15% raised objections to abortion. Even so people seem to feel that there has not been sufficient discussion of these issues within Japan. 94% thought that written informed consent was necessary when receiving a genetic test, and 84% wanted some kind of documentary information.
We asked about disclosure of genetic information within the family in the cases where either the person in question had undergone genetic testing, or where someone else in the family had. 50% replied that the family should be told in the case that the subject themselves had had the test, but 74% said that family information should be passed onto them. People did not want information about themselves passed on, but they did want to know that of other family members. In other words the instinct of self-protection works strongly in the case of disclosure of information, and hence rational examination of the issues is necessary, with specific rules on disclosure being set up for cases in which non-disclosure might lead to risk for someone in the family. On this point I believe that the thinking of WHO is correct.
Concerning the preservation of used genetic samples, 69% replied that they thought that samples should be preserved and 93% of these wanted some explanation concerning this preservation. In reply to the question on the use for other purposes, for example testing for other disease, 18% replied that samples should not be used for other than the original purpose, 12% replied that this use was OK, and 71% replied that use was OK if prior explanation was given. Thus, sufficient explanation and respect for the individualfs opinion are important. Even so, 82% are not against their use in testing. Concerning the workplace, only 6.6% replied that an employer should know genetic information, with 15% saying life insurance companies should know.
Comparing our results with the WHO and the Japanese Society for Human Genetics guidelines we can see that these latter are supported by the majority of people.
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