pp. 140-143 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.
4.2. Teaching Bioethics in Medical Genetics

 Mikio Hirayama, Norio Fujiki*, Shigeaki Nakazaki**, Kazuo Mano***, Masaru Kuriyama.

The Second Dept. of Internal Medicine, Fukui Medical University

* Vice President of UNESCO, IBC, Emeritus Professor of Fukui Medical University

** Director, Kunitaka Clinic *** Head, Neurology Dept. 1st Nagoya Red Cross Hospital

 In the first part, the results of opinion surveys on heredity and the handicapped in Asian countries is reviewed. In the second part, we show the benefit of the mass media as a means to educate the general public . In the last part, we focus on the necessity of teaching bioethics in medical genetics from our experience in Fukui Medical University.

International Opinion Survey on Heredity and the Handicapped

Since we have concluded that our domestic opinion survey has revealed many misunderstandings and prejudices on heredity and the handicapped (1-3), we extended the opinion survey into India, Thailand and China, where there were different backgrounds of society, religion and culture (4-9).

The original questionnaires were designed by Fujiki in Japanese and English, thereafter translated into each language (10). The contents were revised to meet the demand of each country and the questionnaires were answered using multiple choices. We obtained responses from 1404 persons in India (4, 5) (Verma & Sharma in New Delhi, Harvah in Chandigarh, Ahuja in Hyderabad, Malhotra in Calcutta and Parikh in Bombay) in 5 different cities, and 500 persons in Thailand (6, 7) (Ratanakul in Bangkok), and 221 persons in Beijing (Lo) and 519 persons in Fukui (8) (Hirayama) (Table 1). In Thailand, Japan and China, 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. Thai subjects were all Buddhists, and there was no medical staff included (Table 2). While in Beijing, 91% were atheists but the academic training was higher than other countries. In India, 64% had handicapped children. In all countries, most people agreed that money should be spent on both healthy and handicapped children. The image of heredity was good for 90% in Beijing, and bad for 60% in Thailand and Japan. Marriage if fiance' s family had a handicapped person was accepted the least in India (Table 2).

The application of prenatal diagnosis for sex selection was disapproved in Thailand and Japan (more than 80%), but by 70% in India and 60% in Beijing, which may reflect the "one child per family" policy in China (Table 3). In India, and Beijing, about 30% of the respondents agreed that an abnormal fetus has a right to survive, while in Fukui, 50% agreed. That life should be respected was the most frequent reason. In Thailand, only 24% of the respondents agreed that an abnormal fetus has a right to survive, with the most common reason for this being that life should be respected (47%), followed by the reason that there were a lot of handicapped people who can live happily with support of people (45%). This may reflect the religious faith. Namely, the handicapped should lead the life to spend the bad karma, while we should carry out mercy for the handicapped. Many responded with shock upon the diagnosis of their being a heterozygous carrier.

There appears to be much better understanding of handicapped people in recent attitudes, and if the social situation is improved for handicapped, then more people would agree that an abnormal infant has a right to survive. 63% in India knew the term prenatal diagnosis, 41% in Thailand, 80% in Beijing and 44% in Fukui (Table 4). In India, 24% learnt the knowledge by medical staff, while in Thailand 32% by magazine and newspaper, in Beijing 50% by medical staff, compared with Japanese data of 35% by television. Congenital malformation had been thought to be quite rare in every country. In India, 43% agreed with prenatal diagnosis for Down syndrome, lower than compared with other countries. 11% agreed with the abortion after positive diagnosis in Thailand, 40% in Japan, while 70% agreed in India, and 87% in Beijing. The difference of the attitude between Japan, Thailand and other countries might be due to the religious and social reasons.

Table 1: Sample Characteristics

India Thailand Beijing Fukui

Year 1993 1991 1993 1993

Number 1404 500 221 519

Sex (% female) 75 22 56 63

Religion (%) 77 Hindu 100 Buddhist 91 atheist 86 Buddhist / 14 atheist

Married (%) 80 N.D. 44 43

Income (%): low 10 N.D. 29 70

 middle 24 N.D 58 28

high 66 N.D. 25 -

Education (%)

primary school or less 18 1 - 7

high school 31 43 15 60

college 44 50 49 33

postgraduate - 14 6 35

Occupation (%)

student 17 - 39 43

housewife 48 7

worker 4 49 25

comedical staff 31 26 31

doctor 12

official - 44 23

Table 2: Bioethical Opinion Survey in Asian Countries/ What do you think of the handicapped?

India Thailand Beijing Fukui

Who should take care-Government 42 24 60 60

Who should take care-Family 86 53 69 80

Spend money on the healthy /handicapped 82 85 60 60

Image of Heredity Good/Bad 42/32 40/60 90/10 30/60

 Scientific/Mysterious 63/14 40/60 80/20 26/60

Marriage / fiance's family has handicapped 76 40 72 20

Most serious diseases by heredity (Yes/No) 29/33 41/34 90/10 40/20

 One of the most profound dilemmas of modern medicine lies in the questions of whether withdrawal of ordinary medical care can be justified for 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 norms and make our decisions based on the common understanding by combining both newly developed and traditional evaluations.

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 among the countries. 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 disturbed. The results that ethical and emotional conclusions are so common to the these countries, while they depend upon the society differently. We cannot ignore the interactions of education on the process of decision making. Conceptually, the decision stands on both spiritual and material basis. The personal or spiritual pillar includes emotion, ethics, moral, religion, and decision making based upon this pillar is relatively common to the these countries. On the other hand, the social or material pillar consists of law, institution, policy, economy. Education can be regarded as the 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 the understanding of the mechanism of heredity and to advancing technology in medical genetics. Bioethics in medical school, and postgraduate curriculum courses, should be added in order to educate general public effectively. We should concern 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.

Table 3: Bioethical Opinion Survey in Asian Countries-What do you think of genetic disorders?

India Thailand Beijing Fukui

Prefer prenatal diagnosis in general 63 65 80 44

Disagree diagnosis for sex selection 70 88 60 80

Selective abortion of abnormal fetus 72 65 72 40

Abnormal fetus has a right to survive 32 24 33 50

Because life is given by God 58 2 N.D. 20

Because life should be respected 47 47 59 50

Disapprove (unhappy/not valuable) 68(43/42) 76(46/27) N.D. 50(20/30)

Shocked if you are a carrier 62 55 N.D. 60

2% frequency seems to be very high 59 65 N.D. 40

Table 4: Bioethical Opinion Survey in Asian Countries-What do you think of genetic disorders?

(%) India Thailand Beijing Fukui

Knowledge of Prenatal Diagnosis 63 41 80 44

Knowledge of incidence of congenital anomaly 24 25 N.D. 3

Consanguineous marriage should be avoided 75 79 93 61

Acceptance of prenatal diagnosis in case of Down syndrome

43 76 80 74

Abortion after positive diagnosis 70 11 87 40

Carrier detection test 93 88 72 82

 Bioethics in the Mass Media

 The differences on opinion survey are thought to be due to the Japanese concept of birth and death, through the religious and cultural backgrounds. It is more important to establish the bioethics in each country, adapted with their own history, culture and religion, respecting the varieties of their own opinions.

Information transfer also occurs via television programs. NHK, a semigovernmental broadcasting company, has tried to educate the public on bioethical considerations. Since the latter half of 1987, NHK had several programs under the titles like medical care and ethics in life sciences, in vitro fertilization, prenatal diagnosis, terminal care, euthanasia, with panels of an ethicist, a social psychologist, with a journalist. Following this educational programs, NHK picked up these themes for the general public in Good Morning Journal 8 times in a 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 with physicians and sociologists, 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 have time for the discussion on new biotechnology and social psychological consequences, through these mass media in order to let the general public think about these problems.

Teaching Bioethics In Medical Genetics

 Our survey has clarified the misunderstanding and prejudices among the general public. In order to discuss the common understanding on both newly developed and traditional evaluation, we would emphasize the necessity of more bioethics in the curriculum of medical genetics.

We have 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 the handicapped and aged peoples for discussing bioethics, 2) clinical course for 12 hours, including clinical genetic practices of genetic counseling, discussion on bioethics for good doctor-patients relationship, such as informed consent, self decision making, non-directive counseling and confidentiality, 3) postgraduate course for 10 hours, including the research thesis, clinical genetics conference in hematology, neurology as well as counseling techniques.

We tried to make the opinion survey before and after the visit to the hospital for the severely handicapped or aged, following premedical courses on basic human genetics in our medical school. They were shocked to meet the severely handicapped. I myself (Hirayama) was also shocked to see those persons from bed-ridden hydrocephalic infants to good-willed Down syndrome children. The students had time to think about the handicapped and human dignity. I suggested that they are teaching us what is the human value or what is important in human life. After the visit, the agreement for selective abortion in Down's infants, as well as the disagreement for withholding treatment in more severely handicapped infants has decreased. After the discussion with the hospital doctors and nurses, the medical students have recognized the dignity of human being, and the right of life and they wanted to discuss bioethics more in their society. We emphasized that the medical ethics must be taught at the beside, the early encounter to these people make the medical students to have a impetus to know about bioethics or philosophy of life.

Conclusion

 By our Japanese survey , many misunderstanding and prejudices were found, like that birth defects are thought to be quite rare and the disease almost in genetic origin are incurable. So that people don't have any interests or sympathies. There are also differences in their responses maybe from the amounts of information available or the interests they have on specific genetic problems. Since 1992 , the international opinion survey has been extended into Asian countries, especially in India, Thailand and China and the topics covered various issues of heredity, the handicapped, biotechnology and medical genetics. In order to develop the cross cultural ethics, we examined the reasoning that people have.

Most of the respondents in each countries had misunderstanding and prejudices even in modern society. Education of the general public seems to be most effective with impact through the mass media, especially television programs. Differences in bioethical decision were investigated with the differences in religion, economics and cultures, an their ethical and emotional conclusions were common to all countries, while dependence on their society was different.

Lastly, we should discuss very carefully the moral norms and ask for decisions on the common understanding for both newly developed and traditional evaluations. And we need more space in the curriculum on human genetics and bioethics for medical students and professionals, in order to educate the general public effectively.

References

1. Fujiki N, Macer DR (Ed) : Intractable Neurological Disorders, Human Genome Research and Society. Eubios Ethics Inst. Tsukuba.1994.

2. Fujiki N : Bioethical consideration in genetic counselling. Human Dignity & Medicine. 97-106, 1998.

3. Fujiki N et al : Japanese perspectives on ethics in medical genetic. Medical Genetics & Society. 77-91, 1990.

4. Verma IC, Fujiki N et al : The common people's viewpoint on handicap and heredity. Human Genome Research & Society. 160-162, 1992.

5. Verma IC, Fujiki N et al : How national are Indians in their views on handicap & heredity. Intractable Neurological Disorder, Human Genome Research & Society. 184-187, 1994.

6. Ratanakul P : A preliminary report on an opinion survey on handicap & heredity in Thailand. Human Genome Research & Society. 152-159, 1992.

7. Ratanakul P : A survey of Thai Buddhist attitudes toward science and genetics. Intractable Neurological Disorders, Human Genome Research & Society.199-202, 1994.

8. Lo, WHY et al : A survey of attitudes of people with higher education to genetics and diseases in Beijing. Intractable Neurological disorders, Human Genome Research & Society. 195-198, 1994.

9. Hirayama M, Fujiki N et al : Consensus survey on handicap & heredity. Intractable Neurological Disorders, Human Genome Research & Society. 188-191, 1994.

10. Fujiki N: (Appendix) Questionnaires of international consensus survey. Medical Genetics & Society. 86-91, 1990.

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