pp. 203-209 in Intractable Neurological Disorders, Human Genome Research and Society.

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.

Attitudes to diseases and therapy in Japan, Asia and the Pacific

Darryl Macer & Yuko Kato*
Institute of Biological Sciences, University of Tsukuba, Japan

Tables are being formatted, and will soon be on-line. *The results presented here come from the joint results and papers of Angeles T. Alora, Jayapaul Azariah, Hilda Azariah, Prasert Chatwachirawong, Ong Chin Choon, Vijay Kaushik, Frank Leavitt, Peerasak Srivines (in Ref. 2).

Bioethics is the study of decision-making in questions of life. Balancing the ideals of: "do good" and "do no harm" and respecting both "autonomy" and "justice". Do individual people and families in Japan, or other countries, actually make decisions by balancing these ideas, and do so differently? We need to look at the degree of similarity and differences, and determine what level of universalism is possible. At present many countries have their own standards, some of which are based on false assumptions of cultural uniqueness (1). These standards may be challenged by this data, though we also recognise the importance of adopting standards that are suitable to the society. If people are the same then the same standards of bioethics may be applied - Universal bioethics, while respecting the freedom of informed choice and responsibilities to society.

How can we answer the question of cultural similarities? In addition to using our widely open eyes and ears to observe, we can also gain data from opinion surveys. Opinion surveys about bioethical reasoning of public, high school teachers, and medical students in Japan, Australia, Hong Kong, India, Israel, New Zealand, the Philippines, Russia, Singapore, and Thailand, were conducted with collaborators in 1993 (2). The International Bioethics Survey team is shown in Table 1. There were researchers from many countries, with several main collaborators and cooperation from numerous other people. These surveys included open response questions. The results of some key questions which reveal similar attitudes to bioethical decision-making are presented, and further international comparisons to North America and Europe are made.

Data Input:
NZ, Australia, Hong Kong, India, Israel, Philippines, Singapore, Thailand Darryl Macer
Japan public and students Yuko Kato
Japan high schools Shiro Akiyama, Yukiko Asada, Miho Tsuzuki, University of Tsukuba
Russia Vijay Kaushik, Russian Academy of Sciences

Data collection (if different from input):
Public samples (collected by)
Thailand Peerasak Srivines & Prasert Chatwachirawong, Kasetsart University
(who also categorised the Thai language comments)
India Jayapaul Azariah, Hilda Azariah, University of Madras
Israel Frank Leavitt, Ben Gurion University
Medical student samples (collected by)
Australia Peter Singer, Monash University
Hong Kong Maureen Boost, Hong Kong Polytechnic
Japan Michio Hirayama, Norio Fujiki, Fukui Medical School; Hideo Hayashi, Tsukuba University
New Zealand D. Gareth Jones, Otago University
Philippines Angeles T. Alora, University of San Theresa
Singapore (Science students) Lim Tit Meng, University of Singapore; Ong Chin Choon, Singapore Polytech

Table 2: Sample Characteristics - expressed as %'s of total respondents (N)

	Public								Medical/Biology students								High School Teachers
	NZ	A	J	J91	In	T	R	Is	NZ	A	J	In	T	P	S	HK	NZb	NZs	Ab	As	Jb	Js
N	329	201	352	551	568	689	446	50	96	110	435	325	232	164	250	104	206	96	251	114	560	383
%1	22	13	23	26	-	36	43	low	60	70	66	-	50	70	80	52	61	28	47	21	37	26
Time2	3/93	3/93	3/93	7/91	7/93	9/93	4/93	11/93	3/93	3/93	6/93	7/93	9/93	8/93	10/93	12/93	8/93	8/93	8/93	8/93	7/93	7/93
Male	41	45	52	53	61	48	36	38	41	50	67	53	42	46	23	45	64	62	48	63	88	92
Female	59	55	48	47	39	52	64	62	59	50	33	47	58	54	77	55	36	38	52	37	12	8
Rural3	23	29	27	-	22	54	-	20	15	11	51	15	42	13	4	12	69	27	25	21	37	34
Urban	77	71	73	-	78	46	90+	80	85	89	49	85	58	87	96	88	31	73	75	79	63	66
Age (years)
Mean	47.4	45.2	41.7	39.8	30.6	37.2	36.3	33.4	20.8	18.1	21.1	21.8	21.3	21.1	19.3	21.0	40.8	42.5	41.8	42.0	40.7	40.0
<20	5	5	3	4	5	0.5	9	11	38	92	29	22	20	3	69	10	7	4	9	5	0	0
<30	18	19	21	24	55	18	28	37	60	8	70	77	80	97	31	90	33	35	29	29	17	15
<40	15	20	26	23	22	43	28	14	1	0	1	1	0.5	0	0	0	47	40	40	46	34	34
<50	14	15	19	25	13	31	17	23	1	0	0.2	0	0	0	0	0	13	20	21	19	25	32
<60	15	12	14	12	4	7	11	9	0	0	0	0	0	0	0	0	0	1	1	1	21	17
61+	33	29	17	12	1	0.2	7	6	0	0	0	0	0	0	0	0	0	0	0	0	3	2
Marital status
single	25	26	29	29	53	38	33	34	95	98	99	97	99	99	99	100	9	6	13	16	22	24
Married	59	62	66	66	45	59	54	62	3	0	1	2	0.4	1	0.4	0	83	86	79	70	77	75
Div/wid.	13	9	5	4	0.2	3	10	4	0	0	0	0	1	0	0.4	0	6	6	5	10	1	1
Other	3	3	0.3	1	2	0.3	3	0	2	2	0	1	0	0	0.4	0	2	2	3	4	0	0.6
Children
No child	33	39	40	35	55	22	41	48	97	100	100	98	96	100	99	100	22	15	24	24	30	28
Pregnant	1.4	1	1	2	3	2	0.5	4	1	0	0	1	0	0	0.4	0	3	1	1	1	1	1
One	8	6	9	14	16	24	29	6	1	0	0	0.4	2	0	1	0	8	8	12	13	15	13
Two	26	25	36	32	19	39	24	21	1	0	0	0	2	0	0	0	39	38	31	27	36	40
>2 child	31	29	14	17	7	13	5	21	0	0	0	0.4	0	0	0	0	28	38	32	35	18	18
Education
High school	43	36	37	37	4	2	13	16	29	94	54	7	4	0	23	71	1	0	1	1	0	0
2 year college	18	15	19	22	6	3	18	20	48	4	6	13	18	0	77	3	1	2	0.4	1	0.2	1
graduate	25	28	31	31	31	35	37	39	20	2	38	27	60	50	0	6	64	58	59	57	78	82
postgrad.	9	16	10	7	52	59	28	25	3	0	0	51	13	47	0	8	30	37	39	41	21	17
other	5	5	3	3	7	1	4	0	0	0	2	2	5	3	0	4	4	3	0.4	0	0.8	0.3

How important is religion?
Very	27	23	10	-	40	46	10	38	28	19	5	36	54	89	32	21	20	17	42	47	7	10
Some	26	27	33	-	27	44	38	16	20	41	16	24	38	11	41	40	17	29	23	26	25	37
Not too	27	24	40	-	15	8	28	34	18	20	34	18	7	0	22	26	33	32	19	10	45	36
Not at all	20	26	17	-	18	2	24	12	34	20	45	22	0.4	0	5	13	30	22	16	17	23	17
Religion
None	25	25	39	-	2	0.2	20	0	45	32	68	3	0.4	0	25	60	-	-	-	-	-	-
Christian	70	71	8	-	34	0.4	57	0	49	41	5	24	1.7	99	24	40	-	-	-	-	-	-
Moslem	0	0	0	-	4	0.6	6	2	1	4	0	7	0.4	0	11	0	-	-	-	-	-	-
Buddhist	0.3	1	47	-	0.4	99	2	0	2	6	24	0	97	1	36	0	-	-	-	-	-	-
Hindu	0	0	0	-	59	0	0	Jew:	0	2	0	65	0.4	0	4	0	-	-	-	-	-	-
Other	5	4	6	-	1	0.3	1	98	3	15	3	2	0.4	0	3	0	-	-	-	-	-	-
Race
Caucasian	92	91	0	-	0.2	0	-	43	79	61	0	0	0	2	1	0	94	93	95	98	-	-
Asian	1	2	100	-	5	92	-	23	11	23	100	4	79	98	95	99	0.5	0	3	1	-	-
African	0	0	0	-	0	0	-	4	0	0	0	0.3	0	0	0.4	1	0	1	0	0	-	-
Indian	0.3	0	0	-	94	0	-	0	1	7	0	95	0	0	1	0	Maori	Maori	1	0	-	-
Arabic	0	1	0	-	0.6	0	-	4	0	0	0	0.6	0	0	0	0	1	2	0	1	-	-
Other	7	6	0	-	0.4	8	-	26	9	9	0	0	21	0	3	0	5	4	1	0	-	-
Income4
<20000	32	18	37	31	21	28	24	56	25	14	36	24	41	52	59	69	0	0	1	3	27	27
<35000	29	28	34	33	22	42	25	35	10	19	17	27	32	24	23	24	9	3	9	4	47	47
<50000	20	24	15	18	23	21	24	7	17	21	14	25	16	12	10	2	47	52	49	64	19	18
50000+	19	30	14	18	34	9	27	2	48	46	33	24	11	12	8	5	44	45	41	29	7	8

1%=response rate of the survey;

2Time that sampling started.

3Indian samples were divided into city, town and rural responses; Russian samples were from three cities, both are described in the analysis of the results for the respective samples.

4Income for NZ, A, Is, S, P in $; Japanese Yen, (Y500,000; 800,000; 1,000,000; Russian in rbl; T in bahts (125,000; 250,000; 500,000); In in rupees.

Abbreviations used in all tables: NZ=New Zealand; A=Australia;J=Japan; J91 from Japan 1991 survey (Macer, 1992); P=Philippines; S=Singapore; HK=Hong Kong; T=Thailand; R=Russia.
Other surveys that are compared in data tables include: NZ90 (Couchman & Fink-Jensen 1990, N=2034); US86 (from the Office of Technology Assessment Survey 1986, N=1273); US92 (from March of Dimes Survey 1992, N=1032).

Three population samples were chosen for these International Bioethics Surveys, public, university students and high school teachers. The questionnaires consisted of 6 A4 size pages with a 1 page introductory letter including a form for the public and teachers to request a summary of the survey results. The public and student questionnaires were identical. The teacher's survey included some similar questions, but half of the questions were about teaching and curriculum in bioethics and genetics. The native language of the country was used, unless otherwise stated.

The samples are summarised in Table 2. These public and high school teacher surveys were national, using randomly selected mail response. Public questionnaires were distributed by hand into letter boxes chosen at random in different areas of Japan, New Zealand, and Australia. Mail response using enclosed stamped and addressed envelopes was requested. Mail response has one advantage over interviews in that lengthier comments were written to the free response questions and at other points in the questionnaire. The characteristics were representative of the population in each country. The public samples in India, Thailand and Israel included more people with higher education than the national average.

Student samples were chosen from the institutions shown, with the kind cooperation of collaborators shown previously. The funding for these surveys comes from the Eubios Ethics Institute, with some assistance from the ELSI group of the Ministry of Education, Science and Culture Human Genome Project, and The Universaity of Tsukuba. The high school samples in Japan are partly funded by the Ministry of Education as part of a longer term project we are working on, to develop high school materials to teach about bioethical issues in the biology and social studies classes.

In this paper we consider some of the results related to the question of genetic disease, which will illustrate the approach we have been using. The results of the question, "Do you know anyone with a genetic disease or mental disease?" (Q19, 24), are shown in Tables 3 and 4. These show some interesting geographical differences in the number of people who said that they knew someone with a genetic or mental disease. If they said yes, they were also asked to openly cite what disease, which is also interesting to see their perceptions of what is genetic or mental disease.

One of the interesting results in Japan is the high number who said they knew someone with colour blindness, as a genetic disease. The incidence of all types of colour blindness in total in Japan is about 5% of men, whereas it is 8% in Caucasians. However, many Japanese said they knew someone and few Australasians or other samples. Colour blindness is a high school example of a genetic disease in Japan, and it appears that this stays in people's minds. This should make us think carefully about the way that genetic disease is discussed in schools.

Open comments about people suffering with muscular dystrophy are Table 5. Most people expressed sadness or compassion, but in Japan more included a comment like "they would be happy about therapy". This may be only a matter of language, and all these comments are sympathetic. However, there were more comments suggesting people are the same, no matter what disease they have, in Australasia. Only 2% admired people with muscular dystrophy, though for other diseases no one expressed admiration. For mental disease, such as depression (Table 6), more people considered the diseases their own fault, in all countries. People were more afraid of people with neurosis (Table 7). The results of attitudes to people with other diseases are discussed in the following paper by Kaushik and Macer, and more fully in ref. 2.

To ensure the categorisation of open comments was consistent between countries, all comments in English were categorised by D. Macer, and all in Japanese by Y. Kato, and the Japanese comments were translated into English to recheck the consistency.

Another approach to looking at the attitude people have to the handicapped and eugenics is to examine their attitudes to genetic screening and selective abortion. In the previous paper in this book (Macer, p. 114), we can see the acceptance of prenatal genetic screening under national health insurance is high in Japan (76% yes, 8% no). Less people say they would not personally use it than in the USA. Abortion of a handicapped fetus is supported in all countries. There is high support in Japan, only 12% are against it. The reasons shown for genetic screening were also given before, (Macer, p. 115). They include a right to choose, to save the parents stress, and health care is a right. Very few people said the fetus had a right to life.

	Public							Students
	NZ	A	J	In	T	R	Is	NZ	A	J	In	T	P	S	HK
% who knew	47	44	68	39	57	75	58	43	50	73	36	42	38	16	43
N who knew	162	104	106	159	386	106	29	52	54	112	65	96	59	40	45
Not stated	17	5	13	15	37	18	6	1	0	18	6	15	6	3	2
Diabetes	14	6	8	31	104	9	2	5	3	2	11	23	5	4	1
Hemophilia	19	10	11	21	23	12	2	11	6	12	10	7	3	2	4
Muscular dystrophy	20	16	10	6	6	1	2	4	5	15	3	1	2	1	3
Depression	3	0	1	2	0	0	0	1	0	0	0	0	0	0	0
Schizophrenia	2	1	2	1	0	11	0	1	0	1	0	0	0	0	0
Neurosis	0	0	0	4	2	0	0	0	0	0	2	1	1	0	0
Alcoholism	1	0	0	0	0	3	1	0	0	0	0	0	0	0	0
Mental handicap	1	4	8	16	29	0	0	1	0	1	4	6	2	1	1
Huntington's	6	3	0	0	0	0	0	4	2	1	0	0	0	0	0
Asthma	6	1	1	3	11	1	1	1	1	0	1	4	0	1	1
Spina bifida	9	5	0	0	0	0	0	0	1	0	0	0	2	1	0
Cystic fibrosis	13	11	0	0	0	0	1	10	8	0	0	0	0	0	0
Heart disease	6	3	6	1	6	0	0	0	0	0	1	0	2	3	3
Down's	38	24	8	19	28	11	9	14	28	30	8	5	32	10	10
Dwarfism	1	0	2	0	0	0	1	0	0	0	0	0	2	0	0
Physical deformity	5	7	5	4	7	0	0	1	1	1	0	1	0	0	0
Parkinson's	1	1	0	0	0	0	0	0	1	1	0	0	0	0	0
Epilepsy	1	0	7	2	6	8	1	0	0	0	0	1	0	0	0
Alzheimer's	1	0	0	0	0	0	0	0	0	0	0	0	0	0	0
Colour blindness	0	1	30	7	17	-	0	3	3	32	5	14	1	0	7
PKU	5	0	0	0	0	-	1	1	0	0	1	0	0	0	1
Deaf/blind	2	2	1	3	2	-	0	1	0	0	1	1	0	0	0
Thalassemia	-	-	-	0	43	-	0	-	-	-	0	2	0	5	8
Cancer	-	-	-	2	19	-	1	-	-	-	1	2	1	1	-
Albino	-	-	-	5	4	-	0	-	-	2	1	3	0	1	0
Sickle cell anemia	0	0	0	3	4	-	0	0	0	0	0	0	0	1	0
Others	34	29	22	44	78	25	13	14	9	20	19	25	17	12	14
Personal	8	4	1	0	2	0*	0	1	0	0	1	0	0	0	0
Several	4	3	4	5	15	4	5	0	0	6	0	0	2	1	0

	Public							Students
	NZ	A	J	In	T	R	Is	NZ	A	J	In	T	P	S	HK
% who knew	30	39	59	53	41	70	46	41	69	67	34	28	36	16	22
N who knew	219	116	137	217	280	128	23	56	34	137	61	63	54	39	23
Not stated	24	11	22	21	42	22	7	2	0	29	7	7	8	9	6
Depression	117	43	58	68	41	7	3	26	15	66	12	7	8	9	4
Schizophrenia	51	45	33	31	63	51	2	21	9	45	6	17	15	2	6
Neurosis	15	6	21	47	87	7	3	1	0	6	11	14	10	3	1
Alcoholism	0	1	0	1	1	12	0	0	0	1	0	0	1	0	0
Handicapped	6	5	9	27	17	0	1	3	1	5	10	7	5	2	2
Huntington's	0	0	0	1	0	0	0	0	1	0	0	0	0	0	0
Down's	8	4	0	3	3	2	1	1	0	0	0	0	4	7	0
Parkinson's	0	1	0	0	0	0	0	1	0	0	0	0	1	1	1
Epilepsy	1	0	3	1	0	13	0	2	1	2	2	0	0	0	0
Alzheimer's	21	13	1	0	0	0	4	7	6	0	0	1	0	0	0
Other	12	14	5	33	68	12	3	13	5	5	19	16	7	6	4
Personal	12	6	3	1	2	0	0	0	1	2	0	0	0	0	0
Several	8	6	7	9	2	0	0	3	4	4	0	0	2	0	0

Muscular Dystrophy	Public						Students
% of respondents	NZ	A	J	In	T	Is	NZ	A	J	In	T	P	S	HK
N	329	201	352	419	684	50	96	110	435	184	232	161	235	104
Not stated	7.4	6.6	30.0	35.8	16.2	42	7.4	18.4	26.9	28.8	10.3	29.9	34.9	23.1
Don't know	1.9	6.6	6.3	8.8	5.0	0	6.3	11.1	8.0	11.4	3.9	1.3	3.0	7.7
Sad or Compassion	51.2	43.9	23.8	29.1	51.0	28	46.3	33.0	31.4	30.1	61.2	31.9	40.0	24.1
Want to help	7.1	5.6	6.3	3.8	12.6	2	4.2	2.8	12.6	10.3	8.7	7.6	2.6	5.8
Happy for therapy	3.7	5.6	15.9	7.6	4.2	10	1.1	0.9	8.2	5.4	3.0	2.6	1.3	2.9
People are same	15.7	16.8	5.2	4.1	2.2	8	23.2	19.3	7.3	6.0	4.3	16.6	11.5	8.7
Unlucky	1.9	4.1	0.9	1.7	0.7	0	1.1	4.6	0.2	1.1	0.4	1.9	0	7.7
Admire	2.5	1.5	0.6	0	0.3	0	2.1	2.8	1.9	0.5	0.4	2.6	0	0
Helpless	2.2	1.0	1.4	2.9	1.3	8	3.2	1.8	2.3	4.4	3.0	4.5	3.0	13.5
Other	2.8	5.6	1.4	4.8	1.9	2	0	1.8	0.5	4.4	1.3	0.6	0.9	4.8
Rejection	1.5	1.0	0.3	0	0.2	0	1.1	1.8	0.5	0.5	0.9	0.6	0	0
Can't understand	0.3	0	0	0.5	0.2	0	1.1	0	0	0	0	0	0.4	1.9
Own fault/depends	0	0	0.6	0	0.3	0	1.1	0	0	0.5	0	0	0.9	0
Afraid & Risk	1.2	1.0	0	0.7	2.5	0	2.1	1.8	0	0.5	1.7	0	0.4	0

Mental Depression	Public						Students
% of respondents	NZ	A	J	In	T	Is	NZ	A	J	In	T	P	S	HK
N	329	201	352	418	683	50	96	110	435	183	229	161	235	104
Not stated	9.7	9.6	30.2	26.3	19.8	40	10.4	20	34.7	28.4	14.4	31.6	23.4	30.8
Don't know	2.5	7.6	5.6	4.1	4.7	2	5.2	10	9.9	7.7	2.6	1.3	4.3	8.7
Sad-Compassion	36.1	32.5	19.1	24.2	30.8	26	31.2	28.0	10.4	21.9	29.3	29.7	43.8	16.3
Want to help	14.1	12.7	7.9	22.2	24.3	10	10.4	10.0	10.1	26.2	21.0	16.8	6.8	12.5
Happy for therapy	8.5	8.1	16.1	11.2	3.8	8	7.3	6.4	10.6	8.2	3.5	6.5	3.8	0
People are same	10.0	10.2	4.4	1.7	3.7	4	14.6	9.1	8.5	1.1	6.6	7.7	10.2	11.5
Unlucky	2.2	1.5	2.9	1.9	1.8	2	2.1	0	1.2	1.1	0.9	0.7	0	1.0
Admire	0	0	0	0	0.6	0	0	0	0	0	0.9	0	0	0
Helpless	2.2	2.0	0.9	1.4	0	0	1.0	2.7	0.2	0.6	0.9	0	3.0	3.9
Other	0.9	1.5	1.8	3.1	0.6	0	1.0	0.9	0.2	2.2	0	0.7	1.3	1.0
Rejection	1.6	2.5	2.4	0.5	3.1	6	1.0	1.8	3.8	0	5.2	1.3	3.0	3.9
Can't understand	4.7	1.5	0.6	1.0	2.8	0	2.1	0	2.1	0	6.1	0	0.9	1.9
Own fault/depends	3.8	6.1	5.6	0	1.3	0	8.3	3.6	4.5	0	2.2	1.9	0.9	1.9
Afraid & Risk	2.2	4.1	2.6	1.4	1.6	2	5.2	5.5	2.1	2.7	4.9	1.9	4.7	2.8

Neurosis	Public						Students
% of respondents	NZ	A	J	In	T	Is	NZ	A	J	In	T	P	S	HK
N	329	201	352	418	683	50	96	110	435	182	229	161	235	104
Not stated	13.5	13.8	31.5	30.4	20.4	44	11.5	25.5	34.8	36.8	14.9	32.9	26.0	35.6
Don't know	8.2	10.7	4.7	6.7	4.0	2	12.5	23.6	8.6	11.0	1.8	3.2	8.9	17.3
Sad or Compassion	31.8	31.1	18.5	22.7	28.0	12	28.1	23.6	12.0	22.0	27.9	26.5	40.9	10.5
Want to help	12.0	7.1	6.2	14.8	19.2	6	8.3	5.5	11.2	17.0	17.0	13.6	3.8	10.5
Happy for therapy	7.6	5.6	16.5	12.4	4.1	6	6.3	3.6	10.7	5.5	3.1	7.7	2.6	1.0
People are same	7.6	9.2	4.4	1.4	3.8	2	10.4	5.5	8.1	1.1	3.9	6.5	9.8	6.7
Unlucky	1.3	3.1	3.2	1.7	1.6	6	4.2	0	1.7	0.6	0.9	1.3	0.4	1.0
Admire	0	0	0	0	0.4	0	0	0	0	0	0.9	0	0	0
Helpless	1.6	2.0	1.2	1.4	0.4	0	0	0.9	0.5	0.6	0.4	0	4.3	1.9
Other	0.6	1.5	2.4	3.3	0.7	0	1.0	0	0.7	2.8	0	1.3	0.9	0
Rejection	1.9	2.0	2.7	1.2	4.8	4	2.1	0.9	3.8	0.6	8.3	2.6	3.0	4.8
Can't understand	3.1	2.0	0	1.2	4.5	0	3.1	0	1.0	0.6	4.8	0.7	1.3	1.9
Own fault/depends	6.3	6.6	5.6	0.2	2.5	0	3.1	2.7	5.5	0	3.5	1.3	0	0
Afraid & Risk	4.4	5.1	3.2	3.8	4.2	3	9.4	8.2	2.2	1.7	10.0	2.6	3.0	8.7

Table 8 shows the high level of support for personal use of gene therapy. There was also a high level of support for children's use of gene therapy. The support in Japan is growing. The reasons for gene therapy being supported that people gave are shown in Table 9. The major reasons were to save life and increase the quality of life. Few people gave a reasons like "improving genes". There was very little concern about eugenics, confirming the results of a different open question in 1991 (3-5). All peoples showed significant discretion over therapeutic and cosmetic applications of gene therapy, as presented earlier (Macer, p. 116). The support for specific therapeutic applications of gene therapy in Japan may be higher than in other countries (Q28), and the overall support as measured in Q26 and Q27 (Table 8) significantly increased between 1993 and 1991. This we suspect is due to increased media attention, particularly during the last year. It increased much more than over the period 1986-1992 in the USA. This survey is being conducted among US medical students, which will be reported later (2).

%		Public												Students
		US86		US92		J91	NZ	A	J	Ind	T	R	Isr	NZ	A	J	Ind	T	P	S	HK
Q26. If tests showed that you were likely to get a serious or fatal genetic disease later in life, how willing would you be to undergo therapy to have those genes corrected before symptoms appear? Why?
++		35		30		25	47	50	42	61	35	23	54	52	43	44	60	34	43	49	40
+		43		49		29	25	27	24	16	20	24	16	34	44	30	14	30	35	34	38
-		12		9		18	9	6	15	5	11	6	4	3	2	11	2	11	11	6	6
--		9		9		12	4	4	6	4	24	13	0	3	2	5	4	16	3	2	3
DK		2		2		16	15	13	13	14	10	34	26	7	6	10	20	9	8	9	13
N							318	195	335	529	684	414	50	96	110	421	310	230	151	249	104
Not stated							16	14	32	37	23	60	58	15	17	29	38	15	38	38	35
Don't know							2.5	0.5	2.7	1.1	3.1	7.0	0	0	0	3.3	1.9	2.2	1.3	0.4	0
Saves life							34	43	26	41	19	13	24	52	38	38	41	21	39	39	43
Saves family							4.4	5.6	3.3	4.7	2.6	0	2	2.1	0	0.2	3.2	31	1.3	2.0	1.9
Improve quality of life							15	13	9.6	3.4	5.6	1.2	4	7.3	15	4.5	5.2	16	5.9	3.6	1.0
Depends on situation							19	25	9.0	4.3	12	4.8	12	28	38	11	3.9	9.5	3.3	6.4	11
Improve genes							1.9	0.5	5.4	5.5	8.6	0.2	0	2.1	0.9	1.9	6.1	6.0	2.6	2.8	3.8
Other benefit							7.0	4.1	11	1.1	2.9	2.7	0	2.1	1.8	2.9	3.2	0.9	0	0.8	2.9
Economic comment							1.9	1.0	0	1.3	1.3	1.4	0	0	1.8	0	1.3	0.9	0.7	1.6	0
Eugenics/Misuse							0.9	0	1.8	0.4	0.9	0.5	0	0	0	1.7	0	0	0	0	0
Playing God/unnatural							5.3	7.2	5.1	4.5	15	0	2	9.3	5.5	5.2	1.6	20	2.0	5.2	6.7
Against ethics							0.6	0	0.3	0	0.3	0.5	0	0	0.9	1.0	0	0	0	0	0
Health risk							8.0	10	5.7	2.8	3.4	5.1	8	3.1	3.6	10	4.2	0	12	6.4	11
Other harm							3.1	2.1	3.6	1.5	0.2	3.4	2	0	0	2.4	0.3	0	1.3	1.2	1.9
Q27. If you had a child with a usually fatal genetic disease, how willing would you be to have the child undergo therapy to have those genes corrected? Why?
++	51		52		37		60	57	53	73	67	35	62	58	49	51	70	79	57	67	59
+	35		36		29		22	25	21	10	16	24	18	26	39	25	9	13	24	24	26
-	7		5		11		3	2	10	3	2	5	2	5	4	7	3	1	7	3	4
--	4		4		7		2	2	1	3	5	6	0	1	1	2	4	2	3	0	3
DK	3		3		16		13	14	15	11	10	30	18	10	7	15	14	5	9	6	8
N							317	196	335	527	675	436	50	96	110	417	309	230	150	173	104
Not stated							16	13	29	41	23	62	62	16	16	32	39	15	39	60	35
Don't know							1.0	0.5	2.1	1.3	3.9	4.8	0	0	0	2.6	1.3	2.2	1.3	0.4	0
Saves life							42	44	36	42	24	17	22	49	47	40	43	21	37	27	43
Saves family							1.6	2.6	2.7	2.1	8.4	0	2	3.1	0.9	0	0.6	31	0	1.2	0
Improve quality of life							23	19	13	8.3	17	0.9	6	13	16	5.0	9.1	16	11	7.6	2.9
Depends on situation							20	31	13	2.3	33	5.5	10	27	33	16	2.9	0.9	4.0	2.0	14
Improve genes							0.3	0	2.7	5.7	9.9	0.5	0	0	0.9	1.2	4.9	7.4	0.7	0.4	0
Other benefit							6.0	2.0	6.6	1.3	2.5	2.5	0	1.0	1.8	1.2	1.9	0.9	1.3	0.4	1.0
Economic comment							0.9	1.0	0	1.1	0.9	1.4	0	0	0.9	0	0.7	0	0	0	0
Eugenics/Misuse							0.6	0	1.2	0.4	0.3	0	2	0	0	1.2	0	1.3	0	0	0
Playing God/unnatural							2.2	4.6	2.1	2.3	2.2	0	0	1.0	2.7	2.4	0.3	0.9	1.3	0.8	1.9
Against ethics							0.3	0	0.3	0.2	0	0	0	0	0.9	0.7	0	0.4	0	0	0
Health risk							4.4	7.7	5.7	2.1	3.6	4.4	6	6.3	2.7	8.9	4.5	0.9	9.9	4.8	8.7
Other harm							0.6	0.5	2.4	1.1	0.3	1.6	2	1.0	0	1.2	1.0	1.7	0.7	0.4	2.9

++ Very willing + Somewhat willing -Somewhat unwilling -- Very unwilling DK Don't know
Abbrevations: J91 - Japan 1991 (Macer, 1992a, N=532); US86 (OTA, 1987, N=1273); US92 (March of Dimes Survey, 1992, N=1032).

The full results are published in the book Bioethics for the People by the People, including chapters from each region describing the background circumstances, examples of open comments and explanation of the categorisation (2). This provides some data that allows us to actually look at the bioethical decision-making of ordinary people, and to examine the question of the universality of responses to genetic disease. This data generally finds most of the total diversity in all samples is found in any one country or group. In every society there are people who want to use new genetic techniques such as prenatal genetic screening, and there are some who reject the concept of selective abortion. In all societies we see high support for gene therapy, as could be expected. These are two examples of new medical technology that will expand as human genome research proceeds.

Attitudes to people suffering from disease may be affected by the use of genetic screening, but further studies over time will be needed to see whether there are significant attitude trends. In most countries the majority of respondents express sympathy, however, in practise 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 an attempt to develop a method for assessing the general "bioethical maturity" of different societies (2, 5).

The most important message of this survey is that people in different countries share very similar views on most of these issues of bioethics associated with genetics. The main difference may be in the acceptance of selective abortion, but even people saying they were very religious also supported this. The question is a difficult dilemma, and 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 people desire is transcultural. Whether or not policy will reflect that is a matter of hope, but we must be realistic and consider the legacy of our past.

1. Macer, D. (1992) The 'far east' of biological ethics. Nature 359: 770.
2. Macer, D.R.J. Bioethics for the People by the People (Christchurch, N.Z.: Eubios Ethics Institute 1994).
3. Macer, D.R.J. Attitudes to Genetic Engineering: Japanese and International Comparisons (Christchurch: Eubios Ethics Institute 1992).
4. Macer, D.R.J. (1992) Public acceptance of human gene therapy and perceptions of human genetic manipulation. Human Gene Therapy 3: 511-8.
5. Macer, D.R.J. (1993) Perception of risks and benefits of in vitro fertilization, genetic engineering and biotechnology. Social Science and Medicine 38: 23-33.

Statistical Note: The word "significant" when used in this paper means it was significant at least at P < 0.05.