pp. 413-421 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.

F20. Summary of Panel Discussion and Opinion Surveys on Medical Genetics in Asian Countries

Norio Fujiki (Vice President UNESCO, IBC; Emeritus Professor, Fukui Medical University), Mikio Hirayama (Fukui Medical University), Shigeaki Nakazaki (Kunitaka Clinic), Kazuo Mano (Neurology Dept. 1st Nagoya Red Cross Hospital), Ishmar C. Verma (AIIMS, India), Pinit Ratanakul (Mahidol University, Thailand), Wilson Y. Lo (Chinese Institute Medical Genetics, China), Yung Sun Kang (Suwon University, Korea), Victor Boulyjenkov (WHO).

Forward

After the follow up study of our genetic counselling services (1), we have strongly emphasized the necessity of opinion surveys on the recent developments of genetic knowledge among the general public and the Japanese concept of heredity and handicapped, compared with medical geneticist's concepts. Therefore, we have conducted opinion surveys among Japanese lay people and extended this survey internationally, with the kind cooperation of WHO, UNESCO and JHGP. Following the series of Five International Bioethics Seminars in Fukui (2-6), we had the UNESCO Asian Bioethics Conference in Kobe and prepared this report.

Public Opinion Survey on Heredity and Handicapped in 1975-80 in Nagoya and Fukui

Fujiki has started the opinion survey with cooperation of Shirai, Social Welfare Department, at the time of directorship of Department of Genetics, Institute for Developmental Research, Aichi Prefectural Colony for Physically and Mentally Handicapped, using our questionnaires.

Firstly, we have surveyed a total of: 243 female students (140 literature, 103 nurses), 100 female unmarred employees; 163 male students (98 athletic, 65 medical ); 82 unmarried male employees; 82 male married employees; 112 pregnant women; 205 mothers with normal children; 102 mothers with a disabled child; and 198 clients in genetic counselling services (81 in Kyoto, 117 Nagoya) during 1975-80. Secondly, we also conducted this opinion survey in Fukui at the 1982 University Festival events with Fujiki's students (Umeda and Kato) on 274 general public (108 old town and 166 new town ); 287 public health nurses; 37 clients (Fukui); and also audiences of public lectures of Ruffie (176), and N. Fujiki (300), comparing with 264 medical students and doctors (163 Fukui and 101 Nagoya).

In the first survey, we have concluded that the younger aged, the higher the academic profession, the more male and more professional contact with handicapped care are, show most interest for the handicapped. However, concerning more practical question than theoretical understanding, the client themselves or professional staffs working in handicapped care show much better understanding and interests. This means limited knowledges of handicap and heredity might lead to misunderstandings, prejudices and lower cognition by people, even medical students and health professionals.

The second survey in Fukui has clarified still misunderstandings and prejudices with a negative image of heredity, although there has been a little better understanding on hereditary diseases among medical and paramedical staffs. However, even medical students have misunderstanding on the frequency of birth defects and meaning of carrier state. The general public and clients have much more misunderstanding that harelip, or psychosis are thought to be monogenic diseases, or 2% genetic risk is a high recurrence, or to never marry with spouses who have handicapped relatives. Such prejudice occurrs from the concept of general public, that handicap is very rare and almost all hereditary, and they have no interest for handicapped people. The concept has improved a little at Fukui, due to public education and improved psychological reaction to the handicapped (Figure 1).

 

Figure 1
: Selected results of opinion survey on genetic medicine

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Public Opinion Survey on Prenatal Diagnosis and Selective Abortion in Nagoya and Fukui in 1975-1981

Fujiki and Shirai have also conducted opinion surveys on prenatal diagnosis and following selective abortion among the general public in Nagoya on the above-mentioned 1088 general public. Comparing with this general public, we have also the survey among 412 doctors (180 internists, 151 pediatricians and 81 gynecologists) and 503 paramedical staff (367 public health nurse, 136 midwives and 101 medical students) in Fukui. We have also reported the opinion survey on assisted reproductive technique among 200 Japanese Medical Law Association and medical staff.

Almost 90% of the general public agreed with prenatal diagnosis. 28% of pregnant women, mothers with either normal or abnormal child, 42% of priests, and 12% of doctors recognized the fetal right to be born (18% of pediatricians, 13% of internists, and 7% of gynecologists). Pediatricians have much interest in the newborn life, even if handicapped, and followed by public health nurses, midwives, parents with handicapped child, gynecologists, internists and, lastly the general public, conferring the availability for prenatal diagnosis. 74% of lawyers, and 40% in doctors want to have guidelines, 17% and 38% want to have new guidelines, and only 2% and 14%, respectively, trust without guidelines. This reflects the present situation of discrepancy of medical and social recognition and of multifacial judicial interpretations.

These results (8) suggested the Japanese physicians attitudes toward these problems are very similar to those of American physicians, but an explicit sex differences is found between Japan and US regarding determinants of abortion attitudes among the general public. One of the most profound dilemma of modern medicine of the questionnaires is whether ordinary medical care can be justifiably withheld for newborn infants with severe congenital defects, and how we can apply the rapidly growing biotechnology for treatments of human genetic disease, respecting the human dignity.

Public Opinion Survey on Biotechnology in Medical Genetics in Fukui 1982-98

We have also made the public opinion survey on biotechnology in medical genetics in Fukui, among 200 members of the Japanese Medicojudicial Association, 287 public health nurses and 477 audiences for Ruffie and Fujiki's lectures on bioethics in life sciences as mentioned before. Among these surveyed subjects (9), people in Fukui have had much better understanding and interest. One third of respondents agreed with the use of gene therapy in thalassemia, making supermouse, as well as withholding of treatment to severely handicapped infants, as examples of the new genetic technology. Among the people some knew both the merits and demerits, but can't decide which one, and some do not know such a term at all. Therefore we should give the chance to know such scientific knowledge at popular science seminars such as Ruffie and Fujiki's lecture or forums in Fukui Prefectural Life Academy. Of course, which answer is right or not, was not defined, and we should respond according to their own knowledge following their own learning in the concept of biotechnology and ethical, legal and social issues. It is important to think now on such problems. Anyone faced with such a problem has access to critical information and judgments.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Figure 2
: Attitudes to biomedical technology
Since tremendous developments of biotechnology have caused changes in the quality of life and the concept of birth and death in human being (10), we should discuss very carefully the moral norms and make our discussion on the common understandings on both newly developed and old traditional evaluations.

Concerning withholding of treatment for severe handicapped infants, over 80% of the general public agreed, but many paramedical staffs disagreed from the standpoints of human rights for severe handicapped infants, requirements for social welfare for handicapped infants and parental decision making for treatment of such infants. We should continue the public debate for selective abortion associated with prenatal diagnosis (Figure 2). Opinion whether gastrointestinal operation of Down's infants is permissible or not, is almost all agreeable due to relatively good prognosis, but how doctors should explain the decision making of their parents, is judged by doctors themselves. We should emphasize the human dignity at the time of decision making for genetic counseling, for consensus on withholding the treatment of affected infants.
International Opinion Survey on Heredity & Handicapped in India and Thailand in 1990

Since we have concluded that our domestic opinion surveys revealed many misunderstandings and prejudices over heredity and handicapped, we would have extended our opinion survey into foreign countries, especially in Asian countries, India and Thailand, under the kind assistance of Boulyjenkov, Hereditary Disease Programme, WHO and also of Matsubara, Human Genome Projects, Ministry of Education, with WHO Research Grants, and ELSI Group Research Grants. Such Asian countries have different backgrounds of society, religion and culture. In the US and Europe genetic counsellors and clinical geneticists were surveyed by Wertz and Fletcher and in Japan by Ohkura, Ozawa and Shirai as described later.

With the kind assistance of WHO, JHGP and the Naito Foundation, we have expanded the opinion survey for global comparative studies in Asian countries. 1212 persons in 5 different cities in India (11-12), (Verma & Sharma in New Delhi, Harvah in Chandigarh, Ahuja in Hyderabad, Malhotra in Calcutta and Parikh in Bombay), and 500 persons in Thailand (12-13) (Ratanakul in Bangkok) and 627 persons in Fukui (15) (Fujiki) and 519 newly added persons in Fukui (Hirayama, 1997).

Original questionnaires (16) were designed by Fujiki in Japanese and English, thereafter translated into each language. The contents were revised a little to meet the demand of each country and these were answered in the manner of multiple choices. In Thailand and Japan all answered themselves, but in India only 30% wrote the answer by themselves and 70% persons dictated to the interviewer because of low literacy rate. All students in Thai were non-medical but in Japan medical and nurse students have been selected. Thai subjects were all Buddhists and the attitude toward the handicapped was influenced by Buddhist compassion (see Tables on p. 258, and Table 1).

In India, 32% of the respondents agreed entirely that an abnormal fetus has a right to survive, with 47% of these saying life should be preserved and respected, but 49% disagreeing, with the most frequently chosen reason being that it is not happy for sick child to come into this world (60%), followed by the opinion that a handicapped child has low values 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 frequent 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 the 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 surveys, and if the social situation is improved for the handicapped, then many more people agree that an abnormal infant has a right to survive. In summary, the value of handicapped people is mostly highly regarded in Japan and least in India, probably because of financial burden in each country.

Table 1: Results of opinion surveys “What do you think of the handicapped?”

Question (%)

Nagoya

Fukui

China

Thai

India

Who should take care of the handicapped - govt.

70

60

60

24

42

Who should take care of the handicapped - family

62

80

69

53

86

Spend money on both the healthy and handicapped

60

60

60

85

82

Image of genetics Good / Bad

20/40

30/60

90/10

40/60

42/32

Image of genetics Scientific / Mysterious

20/30

26/60

80/20

40/60

63/14

Get married if fiance’s family has a handicapped person

67

20

72

40

76

Most of bad diseases are caused by heredity Yes/No

21/22

40/20

90/10

41/34

29/33

Congenital malformation had been thought to be quite rare, in old Japanese and Indian data, which may be due to traditional cultural or religious reasons, compared to the actual incidence of 1 per 20 live births on average, but not 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 counselling at the marriage of person with handicapped relatives is being sought more. This does not mean that these results are precise representations of the opinions in each location, but means that there is better understanding now than in the past, depending on the locality, as to how people perceive misunderstandings and prejudices. 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 a bad image, and 40% as scientific and 40% as mysterious. In India, 43% said good and 32% bad, and 61% said scientific and 14% mysterious. The hereditary diseases that Thais were aware of most were diabetes, hemophilia, mental retardation psychosis and thalassemia, but most Indian respondents did not know whether colorblindness, Down syndrome or thalassemia were genetic or non-genetic. Japanese correctly responded that colorblindness, Down 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 prevalence of such genetic diseases and the amount of public information released through the mass media.

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 attitudes to abortion and to sex selection are found between Japan and other countries surveyed in Asia, probably due to religious and social reasons. Agreement with selective abortion of a fetus with Down syndrome, as well as disagreement to withholding treatment in severely handicapped infants decreased.

The relationship between congenital defects and heredity was asked and half chose yes and half no in all countries. In India, 42% learned the knowledge of prenatal diagnosis by school, 12% by magazine and newspaper, while in Thai 32% by magazine and newspaper, and less than 10% by school, compared with Japanese data of 10% by school and 40% by magazine and newspaper. 66% in India knew the term of prenatal diagnosis was, 51% in Japan and 41% in Thailand. All these countries have 70% support for abortion, if the result was positive. For carrier detection after explanation of the concept of probability, only 55% said they would be shocked in Thailand compared to 83% in Japan. These questions are based upon assumptions only, so we cannot appreciate how much they could realize the situation. Differences were found between India and other countries, if a strong chance of serious defect in baby was suspected. Application of prenatal diagnosis for sex selection was totally disapproved of in Japan and Thailand, bit only by a little less than 70% in India.

One of the most profound dilemmas of modern medicine lies in the questions of whether ordinary medical care can justifiably be withheld from the treatment of newborn infants with severe congenital defects, and how we can apply the rapidly developing biotechnology for treatment of human genetic disease without affecting human dignity. Recently, there has been increasing awareness of the changes in the quality of life and the concept of birth and death, country by country and 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 old traditional evaluations.

International Opinion Survey on Heredity & Handicaps in Other Parts of Asia since 1994

In these studies, we have tried to compare the differences of recognizing variety and unity in bioethical discussions according to the religious, economic and cultural differences between the countries. Unfortunately the situation did not allow us to treat the subject equally; the data from UNICEF show remarkable differences in the standard of living, health and life. In India due to low literacy rate and low diffusion rate of mass media, the medical care rate and the value of handicapped has been highly disturbed. This study results that ethical and emotional conclusions are so common to the these countries, while they depend upon the society differently. We cannot ignore interactions of education on the process of decision making. Conceptually decisions come from spiritual and material influences. The personal or spiritual pillar includes emotion, ethics, moral, religious etc. and decision making is based upon this pillar is relatively common to all three countries. On the other hand, the social or material pillar consists of law, institution, policy, economy etc, and decision making, and influences by this pillar are different. Education can be read as a bond of the two.

Further comparative studies are necessary to make it clear what is variety and what is unity among the people all over the world. We should appreciate how much education contributes to understanding the mechanism of heredity and to advancing technology in medical genetics. Bioethics should be added in medical school and postgraduate curriculum courses.We should also act in the rapidly developing areas of life sciences, but concern with the thoughtful processes of the multidisciplinary discussions on human dignity, in the wide areas of biology and medicine, with other areas of philosophy, sociology, psychology law and economics. Nobody could imagine the fear of nuclear contamination, when famous physicists first discovered nuclear reaction, which at that time was thought to be a wonderful and useful event for human beings.

 

Other Opinion Surveys

In 1993 the International Bioethics Survey, including genetic screening and gene therapy was conducted by Darryl Macer in Tsukuba University on public, school teachers, and medical students in Australia, Japan, Hong Kong, India, Israel, New Zealand, the Philippines, Russia, Singapore and Thailand. Macer found the majority of respondents support the use of gene therapy and there is less opposition to prenatal diagnosis in Japan than in USA, and the myth perpetuated in Japan among the medical communities that Japanese don't want prenatal screening is wrong. Full results are published in the books Attitudes to Genetic Engineering: Japanese and International Comparisons (21) and Bioethics for the People by the People (22), both published at Eubios Ethic Institute in Tsukuba 1992 and 1994, and several other papers (23-24), include background materials, open comments and explanations of each categories. This provides some data that allows us to actually look at the bioethical decision-making of lay people, and to examine the question of the universality of responses to genetic disease. In every society there are people who wish to use new genetic techniques, such as prenatal genetic screening, and some who reject the concept of selective abortion. In all societies we see high support for gene therapy.

Attitudes to people suffering from diseases may be affected by the use of genetic screening, but further studies will be needed to see whether there are significant attitude trends (22). In most countries the majority of respondents express sympathy, however, in practice, we may not always see such an attitude. This type of study is one approach to address some of these questions. The results are also being used in attempt to develop a method for assessing the general bioethical maturity of different societies.

The most important message of that survey was that people in different countries share very similar diversity of ideas. The main difference may be in the acceptance of selective abortion, but religious persons also supported this. The question is a difficult dilemma, but not simply resolved by dogmatic respect for a right to life. Any universal ethics must include some respect for informed choices of people, and the range of choices is transcultural (22). Whether or not policy will reflect that is a matter or hope, but we must be realistic and consider the legacy of our past.

Bioethics in the Mass Media

There have been many problems such as clarification of the quality of life, euthanasia, organ transplantation, definition of death, notification of cancer diagnosis, environmental preservation and resources, as well as medical genetic problems like prenatal diagnosis, preimplantation diagnosis and genetic counselling which concentrate at the beginning or life (28) We have emphasized moral issues not concerning the question how we human beings should survive in these rapidly growing areas of life sciences, but concerning the thoughtful processes of the multidisciplinary discussions on human dignity, not only within but also between the specific areas of biology and medicine, with other areas of philosophy, sociology, psychology, law, economics and the general public. Any differences in results of opinion surveys may be due to a Japanese concept of birth and death, as religious and cultural backgrounds as pointed out by Bernard in the First International Bioethics Seminar in Fukui. It is much important to establish bioethics in each country, adopted with their own history, culture and religion, respecting the variety of their own opinion.

I would discuss the information-transfer, according to the television programs, which NHK, semigovernmental broadcasting company, have tried to educate the public on bioethics. Since the latter half of 1987, NHK had several programs on ETV 8, educational program on two successive nights (20:00-20:45) under several titles such as medical care and ethics in life sciences, in vitro fertilization, prenatal diagnosis, terminal care, euthanasia, which included a panel of an ethicist, a social psychologist with a journalist. Following these educational programs, NHK has picked up these themes for the public in Good Morning Journal (8:30-9:30) 8 times year, under the titles of new biotechnology and family planning, terminal care, euthanasia, beginning and the end of human life through the changing patterns of physicians, as well as the selection of human rights. These programs included discussion between physicians, sociologists, and writers, talking first on the developments of medical care by doctors, and asking several questions raised by sociologists, writers, and lawyers. It is very important to discuss, in order to educate these problems to have time thinking on new biotechnology and the social psychological consequences of it, through these mass media. The general public should consider their understanding and selective process, in the rapidly changing biotechnological concepts through physicians and mass media.

Fujiki and Nakazawa published a translation of Bernard's book "De la Biologie a l'Ethique" (29), the former President of the French National Academy of Sciences. This book started the original concept of bioethics in Japan at the First International Bioethics Seminar in Fukui, and now has grown year by year, as shown by this book. Students of Fukui Medical School have had their own place for panel discussion on terminal care at the time of the University Festival in 1992, under the kind suggestion of Bernard and Fujiki's, and published its proceeding in both English and Japanese, and received high evaluations.

On the occasion on Fujiki’s invited lecture (30) at the French Academy of Medicine, Dausset, a Novel laureate and President of Mouvement Universale de la Responsibilite Scientifique (MURS) of France contacted with Okamoto, President of International Institute of Advanced Studies , for the expansion of MURS activities to Japan. Since we have organized the Joint Session of MURS Japan and Fifth International Bioethics Seminar in Fukui 1995, and continued these seminars into the UNESCO Asian Bioethics Conference in Kobe, 1997.

Teaching Bioethics in Medical Genetics

As mentioned before, our opinion survey has clarified some misunderstandings and prejudices among the general public and in order to discuss the common understanding on both newly developed and old traditional evaluation, we have emphasized more in the curriculum, at our 1987 International Bioethics Seminar in Fukui.

My respectful tutor, late Prof. Emerit. Komai, who gave us lectures on human genetics for 12hours in my home medical school almost 40 years ago, said “Human genetics brings us much contributions to clinical medicine, and human genetic knowledge become more important each year for clinical sciences and technology, which confronted the society with new moral and ethical problems.” (32)

We have experiences on three different levels of human genetic courses; 1) preclinical course for 20 hours including demonstration of pedigree drawing, karyotyping, blood typing, metabolic spot testing as well as visiting institutes for handicapped and aged peoples for discussing bioethics, 2) clinical course for 12 hours, including clinical genetic practices of genetic counselling, discussion on bioethics for good doctor-patients relationship, such as informed consent, self decision making, non-directive counselling and confidentiality, 3) postgraduate course for 10 hours, including research thesis, clinical genetics conference in hematology, neurology as well as counselling techniques.

We have tried to make opinion surveys before and after visits to institutions for severely handicapped or aged, following premedical courses on basic human genetics in our medical school (9). After the visit, agreement for selective abortion in Down infants (Before: 69% yes, 26% neutral, 5% no; After 52% yes, 39% neutral, 9% disagree), as well as disagreement for withholding treatment in more several handicapped infants (Before: 14% yes, 43% neutral, 43% no; After 21% yes, 50% neutral, 29% disagree), and birth of defective fetuses (Before: 36% yes, 48% neutral, 16% no; After 50% yes, 40% neutral, 10% disagree), decreased. After discussion with hospital doctors, and nurses, medical students have recognized the dignity of human being, and the right of life and they wanted to discuss more bioethics in their society as Wertz and Fletcher have discussed the results of genetic counsellor's opinion survey in their book on Ethics and Human Genetics. We also emphasized that the medical ethics - applied skills-, must be taught at the bedside and this instruction should be done primarily by clinical geneticists as stated in Medical Ethics and Medical Education (33) edited by Bankowski and Bernardelli et al. in CIOMS Conference, and Medical Genetics and Society (3) edited by Fujiki, Boulyjenkov and Bankowski from the IAHB-JSHG Joint Symposium.

Conclusion

As shown in the brilliant strategy for thalassemia eradication by WHO (34), clinical applications of human genetic knowledges - early diagnosis, neonatal screening, prenatal diagnosis, followed by selective abortion and carrier detection as well as genetic counselling-together with such preventive measures, as prohibition of inbreeding, eugenic law, family planning and treatment, has been most effective. Recent tremendous developments of human genome research has been applied to our genetic counselling services but new bioethical problems such as the justification of presymptomatic diagnosis and possible genetic discrimination for genetic susceptibility of common disease using predictive marker (35) should be discussed further, as it was at the UNESCO ABC and WHO-Assisted Satellite Symposium today.

We have concluded the domestic opinion surveys on heredity and handicapped to students and general public in different areas of Japan as described. Our survey found out many misunderstandings and prejudices that birth defects are thought to be quite rare and almost all of genetic origin and uncurable. So that they don't have any interest or sympathy. There are also differences in their responses seemingly from the amount of information available or the interest they have on specific genetic problems. However, these data are improved year by year, and handicapped children have equal human dignity and should not be discriminated due to having deleterious gene.

Since 1962 international opinion surveys have been extended into Asian countries, especially in India, Thailand and China and Korea, comparing with Japan, USA, Europe and other countries, by the support of WHO, UNESCO IBC, Japanese ELSI Group on HGR in Ministry of Education. The topics cover various issues of heredity, handicap, biotechnology, medical genetics and environment. In order to develop the cross-cultural ethics, we should examine the reasoning that people have.

Most of the respondents in each country have misunderstandings and prejudices. Even in modern society, education of the general public seems to be most effective and impact through the mass media, especially television programs. Differences in bioethical decision are investigated with the differences in religion, economics and cultures, and their ethical and emotional conclusions are common to all countries, while dependence on society is different.

Concerning the questionnaires, some agree, others disagree, but some cannot answer either way. Therefore, we should discuss very carefully the moral norm and make our decision with the common understanding of both newly developed and traditional evaluations. More curriculum on human genetics and bioethics is needed for medical students and professionals, in order to educate the general public. We are not talking here of the reality, we are talking about how people perceive misunderstanding and prejudices. It should be important to think about these ethical problems when the general public has been asked to respond these questions.

In closing, we would not want to be the health or genetic technicians who tell the clients the cold facts in an objective manner, who bring in psychiatrists to make the clients feel better. We would want to be medical advisors and genetic counsellors, who know both sciences and human dignity, who can decide what information will be in the best interests of the clients.We should continue to fall back on the basic concept of genetic counselling showing preventive measures and expression of our humanity.

Our UNESCO IBC (36) and MURS Japan have emphasized the responsibility for the further international discussion on international guidelines for the protection of human genome and human rights; exchange over ethical, legal and social issues for providing the genetic, scientific knowledge and biotechnologies. Education for policy makers and general public in the university is important. There should be freedom of fundamental human rights and UNESCO, WHO, CIOMS and HUGO have a roles as bridges between South and North, East and West, where there are different cultural religious and social backgrounds.

Acknowledgment

Partly supported by research grants from the Ministry of Health and Welfare and Ministry of Education, Japan, the National Institute of General Medical Science of the United States of America, World Health Organization, Naito, Chiyoda and Daiwa Health Foundations over the past 35 years.

References

1. Fujiki, N. et al. Genetic counselling -Clinical applications of human genetic knowledge. Jap.J. Const. Med.49: 123-138, 1985.(J)

2. Bernard, J., Kajikawa, K., Fujiki, N. (Ed), Human Dignity and Medicine. Excerpta Med. (I.C.S.#778) Amsterdam 1988.

3. Fujiki N., Boulyjenkov V., Bankowski Z (Ed), Medical Genetics and Society. Kugler Publ. Amsterdam.1990.

4. Fujiki N. Macer D.R. (Ed), Human Genome Research and Society. Eubios Ethics Institute, Christchurch, NZ. 1992.

5. Fujiki N., Macer D.R. (Ed), Intractable Neurological Disorders, Human Genome Research and Society. Eubios Ethics Institute, Christchurch, NZ. 1994.

6. Okamoto M., Fujiki N., Macer D.R.(Ed), Protection of the Human Genome and Scientific Responsibility. Eubios Ethics Eubios Ethics Institute, Christchurch, NZ. 1996.

7. Fujiki N., et al. Social Problems in genetic counselling services. Proc. 21st Proc. Jap. Med. Assembly. 2: 861-864, 1983.(J)

8. Shirai Y., Fujiki N. Doctor's attitudes of prenatal diagnosis and selective abortion. Rep. Study Group in Ministry of Health & Welfare 1: 80-89, 1982.(J)

9. Fujiki N.:Bioethical consideration in genetic counselling. pp. 97-106 in Ref 2, 1988.

10. Fujiki N., et al:Japanese perspectives on ethics in medical genetic. pp 77-91 in Ref 3, 1990.

11. Verma, I.C., Fujiki N., et al: The common people's viewpoint on handicap and heredity. pp. 160-162 in Ref 4, 1992.

12. Verma I.C., Fujiki N., et al: How national are Indians in their views on handicap & heredity. pp. 184-187 in in Ref 5, 1994.

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16. Fujiki N.: (Appendix) Questionnaires of international consensus survey. pp. 86-91 in Ref 3, 1990.

17. Sakamoto S., Fujiki N., et al (Ed), Guidebook on Genetic counselling. Ministry & Wealth & Welfare, Tokyo, 1982.(J.

18. Lo, WHY et al: A survey of attitudes of people with higher education to genetics and diseases in Beijing. pp. 195-198 in Ref 5, 1994.

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20. Verma, I.C. & Takabe, H.(Chaired): International attitudes to genetic technology and diseases. pp. 184-248 in Ref 5, 1994.

21. Macer D.R.J. Attitudes to Genetic Engineering: Japanese and International Comparisons. Eubios Ethics Institute, Christchurch, NZ. 1992.

22. Macer D.R.J. Bioethics for the People by the People. Eubios Ethics Institute, Christchurch, NZ. 1994.

23. Macer D.R. & Kato Y.:Attitudes to diseases and therapy in Japan pp. 203-209 in Ref 5, 1994.

24. Macer D.R.:The challenge of universal bioethics & genetics. pp 70-72 in Ref 6, 1996.

25. Wertz D. & Fletcher J.C.(Ed): Ethics and Human Genetics. A Crosscultural Perspectives. Springer Verlag. N.Y., 1989.

26. Shirai Y., et al: Advances in genetic testing and meaning of genetic counselling. pp. 222-225 in Ref 5, 1994.

27. Osawa, M et al: Public perceptions of genetic counselling. pp. 226-234 in Ref 5, 1994.

28. Fujiki N.:Medical geneticist's responsibility. pp. 43-52 in Ref 6, 1996.

29. Bernard J. De la Biological a l'Ethique. Buchet Chastel, Paris. 1991.(F):Fujiki N. & Nakagawa N.(Translated: Bioethics). Egakushoin, Tokyo. 1995.(J)

30. Fujiki N.: Consideration bioethique sur l'application de nos connasainces en genetique humaine. Bull. Nat. Acad. Med. 169:1037-1043,1986.(F)

31. Dausset J.Sciences and the future of man. Science et Devenir d'Homme.4(18) 34-41, 1989.

32. Komai T. Human Genetics. Sogensha, Tokyo. 1952.(J)

33. Bankowski Z., & Bernardelli, J.C.(Ed): Medical Ethics & Medical Education. CIOMS, 1990.

34. Berg K., Fujiki N. et al. Control of Hereditary Disease WHO(TRS#865) Geneva, 1996.

35. Fujiki N. (Ed) :Illustrated Medical Genetics. Kanehara, Tokyo, 1997.(J)

36. Lenoir N. Bioethics and UNESCO. pp. 12--22 in Ref 6, 1996.


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