pp. 188-191 in Intractable Neurological Disorders, Human Genome Research and Society. Proceedings of the Third International Bioethics Seminar in Fukui, 19-21 November, 1993.

Editors: Norio Fujiki, M.D. & Darryl R.J. Macer, Ph.D.


Copyright 1994, Eubios Ethics Institute All commercial rights reserved. This publication may be reproduced for limited educational or academic use, however please enquire with Eubios Ethics Institute.

Consensus survey on handicaps and heredity

Mikio Hirayama, Shigeaki Nakazaki & Norio Fujiki
Second Department of Internal Medicine, Fukui Medical School, JAPAN


Introduction

Knowledge of medical genetics has advanced recently with the development of techniques for early diagnosis, such as neonatal mass screening, prenatal diagnosis and carrier detection tests, but this has brought with it scrutiny of the attending ethical, legal and social issues (1,2). In a previous survey of genetic counseling (3), half of the clients gave a similar estimate of genetic risk as the consultant did. However in recent years, those who overestimate genetic risk has increased in number. Thus it has become necessary to know the opinion not only of those who come for genetic counseling, but also the general background opinion of the general public as it has shifted over time. We emphasize the necessity of education of medical genetics and bioethics in medical school and for the general public, and we will consider some of the ethical and religious issues concerned with prenatal diagnosis and selective abortion.

Results of the Survey

We have carried out an opinion survey by questionnaire about heredity and handicaps of businessmen, comedical students and staff, and medical students. The response rate was about 70% for all groups. We compared the differences of opinion concerning mental and physical handicap and heredity among the groups.

The average age of each group was as follows: businessmen 32 years, comedical students 20 years, comedical staff 29 years-old, and medical students 22 years old (Table 1). For businessmen and medical students, the men outnumbered the women, and most businessmen were high school graduates, while for comedical staff and students women outnumber men.


Table 1: Sample characteristics (Japan 1993) Occupation: Businessmen; Co-medical students; Co-medical staff; Medical students;

Number 132 151 162 74
Average Age 32 20 29 22
Male 97 39 7 49
Average Age 35 21 40 22
Female 35 112 155 25
Average Age 25 20 28 21


Table 2: Images towards Heredity (%'s who had the following images)

Predetermined; Neutral; Accidental;

Businessmen 68 27 5
Co-medical students 62 30 8
Co-medical staff 59 31 10
Medical students 41 41 18

Columns across the page: Mysterious; Neutral; Scientific;

Businessmen 49 27 24
Co-medical students 58 22 20
Co-medical staff 34 43 23
Medical students 17 65 18


The percentage interested in heredity was as low as 21% of businessmen, 42% of comedical students, and 32% of comedical staffs. 93% of medical students have an interest in heredity. Most respondents answered that the images they got from the word heredity were "difficult", and "neither good nor bad". Compared with the results of the 1982 survey, those with a good impression had increased in number (6to 15%), and those with a bad impression decreased (22to 12%). The number of respondents who felt heredity to be "predetermined" was higher in businessmen (68%), and comedical students (62%) and staff (59%) (Table 2). Those who answered it to be "mysterious" comprised half of the comedical students and businessmen, while 20% of each group answered it to be "scientific". Compared with the previous survey, generally the number of those with an image of heredity as mysterious had increased from 33% to 43%, while the number of those with a scientific image was almost unchanged.

Most of each group estimated the frequency of congenital anomaly in general population to be 1 in a 1000. Even among the medical students only 6% answered correctly that it is 1 in 20 and most answered that it was very rare (Table 3).


Table 3: Incidence of Congenital Anomaly (%'s who chose the following incidence) Columns across the page: 1/10000; 1/1000; 1/500; 1/100; 1/20;

Businessmen 31 44 10 11 4
Co-medical students 15 53 14 16 2
Co-medical staff 28 41 9 17 5
Medical students 27 33 12 21 6

Table 4: Reaction to news of being a carrier of hereditary disease (%'s) Columns across the page: Very shocked; Somewhat shocked; None;

Businessmen 44 54 2
Co-medical students 43 50 7
Co-medical staff 43 54 3
Medical students 31 56 13


As for the knowledge of hereditary disease, businessmen's knowledge of Down's syndrome (50%) was lower than that of other groups (comedical students 72%, comedical staff 68%, medical students 87%). Knowledge of colour blindness was high in each group. Knowledge concerning thalidomide babies was lower among businessmen (62%) and comedical students (65%) than the other groups (comedical staff 77%, medical students 88%). 24% of businessmen knew of the term "prenatal diagnosis". For all other groups about 50% knew the term (comedical students 53%, comedical staff 45%, medical students 58%). The source of information of those who knew about prenatal diagnosis was asked. They were asked to choose from a among newspapers, television, radio, magazines, weekly magazines, and others. The medical related groups all had a large percentage replying "other", i.e. through lectures, however, television occupied a large percentage in every group (businessmen 43%, comedical students 37%, comedical staff 27%, medical students 36%).

After an explanation of amniocentesis, a case was presented where the first child had Down's syndrome. The respondees were asked what they would do as the mother if they were pregnant with a second child, and a doctor told them there was a 30% chance it has Down's syndrome. Over 70% of respondents in each group answered they would take the amniocentesis test (businessmen 72%, comedical students 70%, comedical staff 81%, medical students 74%). When asked what they would do should the test show the fetus to be abnormal 15-19% of respondents wanted to bear the child in each group, except the medical students (businessmen 15%, comedical students 16%, comedical staff 19%, medical students 0%). The number of those who didn't want to bear the child was higher among medical students (70%) and lower in other groups (comedical staff 52%, businessmen 40%, comedical students 33%). Everyone carries unknowingly an average of 8 fatal deleterious genes but on being asked how they would feel if they found out they were a carrier of a genetic disease, over 90% of respondents answered they would be shocked (Table 4). The proportion was lower among medical students (31%). Were they to be told that they needed to have such a test, 80% of each group answered that they would. Half of them agreed they would recommend brothers and sisters to take such a test.

Discussion

This survey showed that the interest of businessmen in heredity was rather low. Comedical students and staff took less interest in heredity than expected but their knowledge of heredity was intermediate between that of medical students and businessmen. Most of the respondents in each group exception for medical students had an image of heredity as mysterious and predetermined. There were many businessmen who did not know the word "prenatal diagnosis". The main source of information for those who had heard of it was television. In the modern information society, education of the general public seems to be most effective and have most impact through the mass media, especially television. It's our duty, as specialists to cooperate with people in the mass media and so provide information that is accurate and easy to understand.

This survey also showed that even medical students thought that the frequency of congenital anomaly was very low. In view of these results, more education of medical genetics and bioethics in medical school is necessary (1) and also during compulsory education, high school and university. For adults, education that is correct and easy to understand should be given via the mass media, especially television (4).

There was a problem in this survey in the way the question concerning amniocentesis was set, as no adequate clinical explanation of Down's syndrome was given. Usual textbooks of genetics only describe Down's syndrome objectively and unemotively involving mentally retardation (IQ25-60) , an average life span of 40 years, 40-70% complication frequency for heart anomalies and so on. A richness of sensitivity and affection that cannot be seen in unaffected people can sometimes been seen in mentally retarded children whose intelligence was lower than usual. Dr. Sakanoue, a noted pediatrician at Kitasato University, mentioned in the Symposium of Life and Ethics at Waseda University (5), a person with Down's syndrome who lived until 61 years old whose life was full of wonderful impression that other people could not describe, and he lived fruitfully each day. Dr. Sakanoue was against the manipulation of life of a Down's syndrome fetus or child.

Next, the inherent problem that underlies prenatal diagnosis and selective abortion is when human life begins. In criminal law in Japan, it is at the time of implantation and, in civil law at the time of birth (6). For Roman Catholics, life begins at fertilization and so we can see that there are various intertwining standpoints (7,8). From the standpoint of religion it is easiest to think, and a correct interpretation, that when the point at which the individual soul enters the fetus is the beginning of the person. But the Roman Catholic idea that the soul enters the fetus at fertilization has the following problems according to Dr. Mikamo, 77% of fertilized eggs and implanted embryos are doomed to die, half show chromosomal abnormality, so only 23% result in a live birth (9). For the individual soul to enter the fetus during this dangerous period would not be good for it, but rather harmful. A certain leader of a new Japanese religion tells us that the human soul enters the fetus at 9-10 weeks of gestation (10). At this period, "morning sickness" appears. The spiritual meaning of "morning sickness" is said to be that the soul of the fetus enters the mother's uterus and the mother feels bad just as if she was temporarily possessed by a spirit. The reason that the pregnant woman's taste in food tends to change at this early period of morning sickness at 3 months tends to be explained as being because the fetus likes it (10) . At this stage, the face of fetus changes to that of a human child from that of reptile (11). Also the brain develops noticeably. Electroencephalogram can be detected and the cerebral hemisphere's basic structure is reported to be complete at 3 months (11,12).

In the Eugenic Protection Act of Japan, induced abortion of a fetus up to 22 weeks of gestation is permitted providing stipulated conditions are met, and according to the statistics for 1990, about 460,000 cases of induced abortion were performed (13). From the point of view of the soul of the fetus, there is cause for grave concern. If prenatal diagnosis can be made possible before 8 weeks of gestation, abortion might be permissible for particularly seriously diseased fetuses.

It might be right to consider the relationship of brain structure and function with soul in its religious meaning as Dr. Eccles, a noted neurophysiologist, describes in the last chapter of his book entitled Evolution of the Brain, "An appealing analogy, but no more than an analogy, is to regard the body and brain as a superb computer built by genetic coding, which has been created by the wonderful process of biological evolution. On the analogy, the Soul or Self is the programmer of the computer. Each of us as a programmer is born with our computer in its initial embryonic state. We develop it throughout life"(14). A fault in brain function is like a breakdown in part of a computer, and we are certain that the idea that the soul as a programmer is still intact and healthy leads to respect for all human beings including those with handicaps.


References

1. Hirayama, M. et al. (1992) Genetic counseling. Modern Physician 12: 277-281.

2. Fujiki, N. et al. (1992) "Ethics of Medical Genetics", Modern Physician 12: 317-321.

3. Fujiki, N. et al., Japanese perspectives on ethics in medical genetics, pp.77-91 in Medical Genetics and Society, eds. N. Fujiki, V. Bulyzhenkov & Z. Bankowski (Kugler Publications, 1991).

4. Ohno, Y. From the standpoint of an information conveyer, pp.168-170 in Human Genome Research and Society, eds. N. Fujiki & D.R.J. Macer (Eubios Ethics Institute, 1992).

5. Sakanoue, M. et al., "Symposium : How to Accept Life.-Medicine, Law and Ethics-" pp.217-245 in Japan Ethics Society Articles 24, Eds., Japan Society of Ethics (Keio Tsushin).

6. Higurashi, M. et al. (1993) Ethics and Fetal Medicine. Jpn. J. Human. Genet. 38: 335-339.

7. Phillips, M. & Dawson, J. When does life begin ?, pp.27-31 in Doctor's Dilemmas : Medical Ethics and Contemporary Science (The Harvester Press 1985).

8. Shirai, Y., Artificial Abortion - Ethical Issues and Japanese Attitudes, pp.149-160 in Issues of Ethics in Medical Care and Research, eds. N. Okamoto, K. Baba & T. Furusho (Tokyo: Igakusha, 1988).

9. Mikamo, K., Cytogenetic Study of Reproduction, pp.140 Abstract of 38th Proceeding of the Japan Society of Human Genetics 1993.

10. Okawa, K., Happiness As a Mother, Delight to Bring Up an Angel, pp.16-101. (IRH Press, 1993).

11. Miki, S. Development of Fetus, pp.99-124 in The World of Fetus, Life Memory of Mankind (Tyuko Shinsho, 1983).

12. Niedermyer, E. & Lopes da Silva, F., Maturation of the EEG : Development of Waking and Sleep Patterns, pp.133-157 in Electroencephalography, Basic Principles, Clinical Applications and Related Fields (Urban & Schwarzenberg 1987).

13. Takemura, T. et al. (1992) Eugenic Law and Family Planning. Modern Physician 12: 271-276.

14. Eccles, J.C., The Creation of the Self or the Soul, pp.236-238, in Evolution of the Brain : Creation of the Self (Routledge 1989).


To next chapter
To contents list
To book list
To Eubios Ethics Institute home page