Editors: Norio Fujiki, M.D. & Darryl R.J. Macer, Ph.D.
Professor, Dept. of Internal Medicine & Medical Genetics, Fukui Medical School, JAPAN
In this section the ethical, social and legal impacts will be discussed. The impact is an urgent issue related to the progress of science and technology. We have to first grasp what the general public has in mind. Although we have some differences with respect to culture and religion, we want to talk about these issues.
In 1987 we had the First International Bioethics Seminar in Fukui, and in 1990 we had an International Forum for discussion (IAHB and JSHG meetings). We have also been conducting surveys on heredity and disabled in Japan. As a result of that survey we found that there was tremendous prejudice and misunderstanding against the disabled. As Prof. Wikler discussed, people should not be eliminated or discriminated against just because they have inferior genes. This is what we also have emphasised. Fortunately with the support of WHO (Dr Bulyzenkov) we received support to carry out an international comparative study. This time we targeted our study in five regions of India, where they have different cultures and religions. Although Prof. Verma is not with us, we have Prof. Verma's abstract in this section. We look into the position in Japan, in Thailand, China and Korea. In this section we will have papers from these countries, as well as a presentation from Western society. Based upon the experience of the speakers, although the surveys presented here have not been performed on an equal basis, we would like to see the results of these surveys and ponder upon the framework of the international network. We want to learn what the general public have in mind.
Ohkura: Professors' Fletcher and Wertz took an initiative in 1985 in discussing ethics and medical genetics in the USA, from their international survey of genetic counselors, published in 1989. There investigation asks what attitudes genetic counselors had, and what ethical reasons they gave for their attitudes.
In summary a difference was found between Japan and other countries. As to the ethical problems, the overall responses were similar, but the response rates to questions on ethical reasoning were different. In other countries 92% gave a very accurate counsel, but in Japan only 61% gave answers on the ethical problems. They never thought of the ethical reasons, they had not been trained to think of things from the ethical viewpoint. I think this is a very significant difference. The differences in attitude based on ethical principles were compared. In the category of justice there was no difference to other countries, nor in the category of beneficence, but in Japan there was less importance placed on autonomy. There was also a significant difference in the responses in non-maleficiency, which was regarded more importantly in Japan. Thus we can see that in Japan, families have a low opinion of their own judgement, and they depend upon the doctors to make a judgement. The doctors will be asked by the families to make the judgement. The doctors are very compassionate to the patients, and do not behave as a powerful authority.
There have been been many technologies developed, but in many of these we experience failure from the ethical point of view. The Human Genome Project is a very large project, and we only have 0.7% of the results, but it is already raising issues. At an early stage we have to do a technical assessment, we should not repeat the same mistakes the have happened in other areas. I request that people make a technical assessment at this stage, it is not too late. This has been called for before, but there is still no progress, so it is time to do it now.
Fujiki: You mentioned what I wanted to say, thank you for your comment.
I would like to summarise some of the findings of the cross cultural survey that has been conducted. In India, 32% of the respondents agreed entirely that an abnormal fetus has a right to survive, with the most frequent reason chosen for this being that life is given by God (58%), followed by the reason that life should be preserved and respected (47%). However, 49% disagreed with this view, with the most frequently chosen reason being that it is not happy for such children to come into this world (60%), followed by the opinion that a handicapped child has low value as a human being (40%). In Thailand, 25% of the respondents agreed entirely that an abnormal fetus has a right to survive, with the commonest reason for this being that life should be preserved and respected (46%), followed by the reason that there are a lot of handicapped people who can live happily with support of people (45%). However, 37% disagreed, with the most common reason being that this child will be unhappy (45%), followed by the view that their life is not valuable (26%). We can compare this data with results in Japan, where 52% agreed entirely that an abnormal fetus has a right to survive, with the commonest reason for this being that live should be preserved and respected (60%), and the choice that we have no right to select fetal life (30%), however, 43% disagreed, with the reason that the child will be unhappy (30%), followed by the family burden due to economic and psychological conflicts (30%). There appears to be much better understanding of handicapped people in recent attitudes, and if the social situation is improved for handicapped people then many more people will agree that an abnormal infant has a right to survive.
We have also conducted an opinion survey on prenatal diagnosis and selective abortion among the general public and health personnel. These results suggest that Japanese attitudes are similar to those of other countries, but explicit differences regarding determinants of abortion attitudes and attitudes to sex selection are found between Japan and other countries surveyed in Asia, probably due to religious reasons, which Verma and Ratanakul discussed in their presentations.
One of the most profound dilemmas of modern medicine lies in the questions of whether ordinary medical care can justifiably be withheld from newborn infants with severe congenital defects, and how we can apply the rapidly developing biotechnology for treatment of human genetic diseases without reducing human dignity. Recently there has been increasing awareness of the changes in the quality of life and concepts of birth and death. These change by different degrees country by country, and from year to year. We should discuss very carefully the moral norm and make our decisions based on the common understanding by combining both newly developed and traditional evaluations.
All our presentations have emphasized that more time is needed in the medical curriculum for genetics and bioethics in Medical School and extramural courses should be added in order to educate the general public. As described in the IAHB-JSHG 1990 meeting, we have tried to conduct opinion surveys before and after respondents inspected an institution for the severely handicapped, following a premedical course on basic human genetics at Fukui Medical School as well as clinical and postgraduate courses, and at clinical genetics conferences.
I have summarised the present data in our international opinion survey based on samples from Japan (Fukui 1992; N=600), India (New Delhi, Chandigarh, Hyderabad, Bombay, Calcutta 1991; N=1200), Thailand (Bangkok 1991; N=500), and compared these with our previous data from Nagoya (1980; N=200) and Fukui (1982; N=600). The samples collected in each area had average characteristics of: 1 male/3 female; 40% housewife, 40% student and 20% business; 60% single and 40% married; 40% having children and 60% having no children; 10% professional, 40% college, 40% high school and 10% non-educated; and 70% high income, 25% middle income and 5% low income.
Our previous papers showed that those of younger age, higher academic profession, more males and those of closer association with the handicapped or who are in a profession associated with handicapped care, showed more interest for the handicapped. Concerning more practical questions than theoretical understanding, the clients who came for genetic counseling themselves, or professional people working for handicapped care, showed much better understanding and interest. This tendency is seen in all present reports and means that it is limited knowledge of handicapped and hereditary that may lead to misunderstanding, prejudice and less cognition by people, even in medical students and health professionals. However, recent developments of the teaching of medical genetics appear to show much improvement regarding such misunderstandings and prejudice.
For example, previously, congenital abnormalities had been thought to be quite rare, especially in old Japanese and Indian data, which may be due to traditional cultural or religious reasons, as opposed to the actual incidence of 1 per 20 live births on average, but not so in new Japanese and Thai data, reflecting some educational improvement. Many responded with shock upon the diagnosis of their being a heterozygous carrier in the past, but now this has improved a little. Also genetic counseling at the marriage of persons with handicapped relatives is being sought more. This does not mean these results are precise representations of the opinions in each location. but it means that there is better understanding now than in the past, and depending on the locality, as to how people perceive misunderstanding and prejudice. There are some differences in responses stemming from the amount of information available on their specific problems. In Japan, 40% of the respondents considered "genetics" as good and 38% as bad, and 40% as scientific and 40% as mysterious; in India 43% said good and 32% bad, and 61% said scientific and 14% said unscientific. The hereditary diseases that Thai people were aware of included diabetes, hemophilia, mental retardation and psychotic diseases, and thalassemia, but most Indian respondents did not know whether colour blindness, Down's syndrome or thalasemmia were genetic or non-genetic. Japanese correctly responded that colour blindness, Down's syndrome, hemophilia and progressive muscular dystrophy were genetic, but were unclear about thalassemia. Therefore in each area there are different responses and levels of awareness due to local prevalences of such genetic diseases and the amount of public information released through the mass media.
Agreement for selective abortion of fetuses with Down's syndrome, as well as the level of disagreement for withholding treatment in more severely handicapped infants has decreased. In summary, in Fukui after discussion with our hospital doctors and nurses, medical students agreed with the dignity of a human being and the right to life, and they wanted to discuss bioethics in society. Previously, Wertz and Fletcher's international project, and in this session, Dr Shirai, have discussed the results of opinion survey responses by genetic counselors in the USA, Japan and other countries.
Concluding my chairman's remarks, we have compared international opinion surveys between India, Thailand and Japan, which will probably be expanded to China and Korea among the Asian countries, where there are different religions, cultures and disease patterns. This joint research project has been supported by research grants from the ELSI Working Group of the Study Group of Human Genome Research supported by the Ministry of Education,as well as by the World Health Organisation, and more details will be published later.