Darryl Macer, Yuki Niimura, Takayoshi Umeno, and Kunio Wakai
Institute of Biological Sciences, University of Tsukuba, Tsukuba Science City 305, Japan.
pp. 33-48 in Eubios Jounral of Asian and International Bioethics 6 (1996).
Sample and Methods
In May 1995 a survey of doctors was conducted (Doc in the tables) including the physician decision-making survey of Rothenberg et al. (1996) of the Volkswagen Foundation-Kennedy Institute Project, together with a supplementary double-sided survey on bioethics and euthanasia. 300 questionnaires were posted, including 93 inside the University of Tsukuba, and 197 to other doctors in university hospitals in Japan (including 137 members of the Japan Association of Bioethics). From the 207 questionnaires sent out, 3 had the wrong address, making the sample size 204 outside of Univ. of Tsukuba, and from these 113 responded (55%). Gift pen and pencil sets provided by L. Rothenberg were included to try to increase response rate, and we acknowledge the assistance of Dr. Takashi Hosaka with this survey . From 93 inside the University of Tsukuba, 4 had the wrong address, making the sample size 89 inside the University of Tsukuba, and 19 responded (21%). A total of 133 responses were returned (47% response rate), of which 86 were physicians caring for adult patients at an academic medical center which were included in the advance directive survey. 86% were male, and the average age was 45.5 years. The results of those questions will be reported in the next issue of EJAIB (Macer et al., 1996b; Rothenberg et al. 1996).
In Sept-Oct 1995 a survey of all other members of the Japan Association of Bioethics was made using the 1993 address book (A95 in tables here). A total of 512 surveys were posted, and after resending for mistaken addresses, and subtracting those who had passed away or could not be contacted, the number of surveys that were sent was 498. In December, reminders were sent by fax and post to those who had not replied. By February 1996 there were 175 respondents which are analyzed in this paper. 63% requested a copy of the summary of the results, which is this paper.
The results were calculated using Statview software in Macintosh. The main ideas in the open comments were placed into idea categories, and the results are summarized in the Tables below, using the approach of Macer (1994). Comparisons are made to the following samples (abbreviations): Public 1991 (P91), Biology students (S91), Academics 1991 (A91), Scientists (Sci), High school biology teachers (BT91), from Macer (1992); Fukui Nurses 1993 (Nu) from Macer (1994, 1994b - surveys collected by Dr. M. Hirayama and Prof. N. Fujiki; using 1991 questionnaire); Public 1993 (P93) and Medical students 1993 (S93) from Kato and Macer in Macer (1994a); High school biology (BT93) and social studies (ST93) teachers from Macer et al. (1994, 1996a); and a pilot public random digit telephone survey of Macer conducted in 1995 (with Shiro Akiyama, Ayumi Okada & Nobuko Macer, which had a response rate of 50% (P95(T)).
The complete English translation of the open comments from the 1995 surveys is presented at the end of this paper to show the depth of responses.
The main sample characteristics of the
A95 sample were:
72% male, 28% female: average age 55.1 years, 91% urban.
44% were university staff and 28% were Medical workers.
The specialties were 18% law, 29% medicine, 22% philosophy, 4% social sciences, 2% psychology, 21% others.
Marital status: 18% single, 77% married, 5% divorced
Children: 32% no children, 2% pregnant, 14% one, 32% two, 20% more children
Education: 12% up to two year college; 28% graduates; 47% postgraduates; 13% others.
Religion: 34% No, 22% Christian, 37% Buddhist, 7% Other
Importance of religion in daily life: 29% very, 35% somewhat, 24% not too, 12% not at all important.
Income: 11% <500,000Y; 18% 500,000-800,000Y; 19% 800,000-1,000,000Y; 53% >1,000,000Y
Images of bioethics
The first question in the survey asked
what respondents thought bioethics was. Most of the respondents
had heard of bioethics. Ideas in the comments were assigned to
up to two categories, and the comments are listed in the Appendix.
A comparison is made in these questions to the analysis of the
International Bioethics Education Survey in Macer et al. (1994)
of high school teachers images. The answers may be influenced
by the surrounding questions and topic of the questionnaire, but
provide some comparison. There was a high proportion of comments
about respect for life and natural providence among all groups.
With the same question among high school teachers in Australia
and New Zealand more practical ideas were expressed than the vague
concepts (Macer et al. 1996a). Among the A95 and Doctors there
were more comments about medical decisions and human choice, which
are practical, compared to teachers, however, there was still
less practicality than in the other two countries that this question
has been tried in.
|Q1: What do you think bioethics is? %'s|
|Respect for life||29||18||28||22|
|Very important subject||4||3||2||9|
|Human benefit / rights||9||3||9||22|
|Respect human life||9||11||-||-|
|How we should use life||14||13||7||7|
|Science raises issues||8||5||2||7|
|People face issues||11||4||1||1|
|Debate is useful||3||2||3||0|
|How to apply biotech||6||8||9||10|
|Animal rights / expts||2||0||1||0|
|Quality of life||2||4||-||-|
Several of the general questions from the International Bioethics Survey (Macer 1994a) were given to the survey of the members of Japan Association of Bioethics (A95). The results are below with comparisons to P93 (Kato & Macer 1994). The results of Q2a, Q2b, are statistically the same as P93 and S93, suggesting that the general science attitudes of this sample are similar to the public and medical students in Japan. The perception of science as doing good (Q4) tends to be higher in A95 than P93 and S93, and the A95 were significantly more interested in science than the public. The attitudes to the release of GMOs were rather similar to other groups surveyed (Q5) as shown in the Table below.
More of the A95 respondents tended to disagree with surrogate motherhood (Q2f) more than the public, but the abortion attitudes were rather similar. There was less of an interquestion difference between Q2d and Q2e in A95 than in the public, which is consistent with the lower acceptance of prenatal diagnosis by A95. Within the A95 sample, females and very religious persons were significantly less accepting of abortion, however there were not significant differences in the public or students.
The sources of information that
people said they used to make decisions were diverse, but mostly
the media, books, journals and conferences and colleagues. 14%
did not state sources, compared to 16% in P93 and 13% in S93.
Q2: To what extent do you agree or disagree with the following statements?
++: Agree Strongly +: Agree =: Neither -: Disagree --: Disagree Strongly
2a. Science makes an important contribution to the quality of life in Japan.
30% 57% 12% 0.6% 0%
P93 34 56 8 2 0
2b. Most problems can be solved by applying more and better technology.
9% 28% 41% 20% 2%
P93 12 34 33 17 4
2c. Students should be informed about the social issues associated with science and technology so that they can participate in contemporary debates.
57% 38% 5% 0% 0%
P93 51 39 9 1 0
2d. A woman can abort a 4 month old fetus.
6% 26% 29% 27% 12%
P93 6 23 33 29 6
2e. A woman can abort a 4 month old fetus that has congenital abnormalities.
7% 42% 30% 16% 5%
P93 6 45 28 10 2
2f. A married couple can use a surrogate mother and in vitro fertilization if they cannot get pregnant themselves.
2% 12% 28% 40% 18%
P93 6 21 35 23 15
Q3. Which of these statements best describes your interest in science and technology?
Not at all 0% 1 (P93)
Not very interested 2% 17
Interested 27% 43
Very interested 38% 27
Extremely interesting 33% 12
Q4. Overall do you think science and technology do more harm than good, more good than harm, or about the same of each?
More harm 3% 5 (P93)
More good 52% 42
Same 39% 45
Don't know 6% 8
|Tomatoes with better taste|
|Healthier meat (e.g. less fat)|
|Larger sports fish|
|Bacteria to clean oil spills|
|Disease resistant crops|
|Cows which produce more milk|
The knowledge of selected areas of science and technology and several
words, was examined using the standard question format used in
all the previous samples:
Q6. Can you tell me how much you have heard or read about each of these subjects?
Not heard of it
Heard of it (H)
Could explain it to a friend (E)
Have you discussed it in class? (Teach - Yes)
The results are shown in the tables, and show several differences. 90% of members of Japan Association of Members (A95) said they could explain bioethics to a friend, but 10% said they had heard of it only, higher than expected for a sample of the national association. Less of the university physicians could explain it, it fact a similar number to the biology teachers. We could wonder whether they should be expected to know more since they were practicing medicine. The problem may be the interpretation of the question. Besides bioethics, eugenics was also most familiar to the A95 among these groups.
|Human gene||E T||71||49||71||13||62||51||18||15|
Benefits/risks of selected areas
The standard question on benefits and risks of the areas below was given to A95, and the results are in the Table.
Q6. Do you personally believe each of these scientific discoveries and developments is a worthwhile area for scientific research? Why?...
Yes No Don't know
IVF In vitro fertilization
NP Nuclear power
Pes Agricultural Pesticides
GE Genetic engineering
Q7. Do you have any worries about the impact of research or its applications of these scientific discoveries and developments? How much? Why?..
No A few Some A lot
level of benefit and concern are similar to the public and students,
as are the reasons (Macer 1994b). There was more citation of
scientific benefits are a benefit, and the conditional comment
that they would be helpful if we were careful, or considered the
dangers, than in P93 or S93. IVF was the example seen to be least
worthwhile, consistent with 1991 surveys on academics, and all
other samples in Japan (Macer 1994a, 1994b).
|Help if careful||15||16||15||20||29||18|
|Bad for the Environment||0||1||1||1||4||1|
|Good for the Environment||0||1||1||0||0||0|
|Insufficient control / misuse||1||0||2||1||0||1|
|Dangerous / harmful||0||0||3||11||5||3|
|Playing God/Interfer. nature||9||1||3||1||2||1|
|Don't need / It is a Waste||4||1||0||5||3||1|
|Can control/limit use||8||15||9||6||7||7|
|Interfere nature / Play God||5||0||7||2||2||4|
|Fear of unknown / feels bad||7||4||10||8||7||11|
|Human health /deformities||7||1||1||1||5||1|
The results of questions on fetal diagnosis are compared to public and students in the table. The members of Japan Association of Bioethics and University Physicians were more negative towards fetal diagnosis than any of the other groups ever surveyed by Macer. In all other groups over 70% had supported the general question, with less than 9% disagreeing; and the range for personal use was 56-66% saying Yes and 10-24 saying No.
In the questionnaire to A95 there were also two questions modified from a survey sent in 1995 to members of the Muscular Dystrophy Association (The results of the survey of Dr. H. Kaiya will be in a paper in the next issue). The questions were modified to include three diseases, so that readers of A95 did not think we had a prejudice against any disease. The results confirm that the A95 group is the most conservative group that has been surveyed, even more so than patients seen in a number of diseases.
Q14. If you were having children, would
you use DNA diagnosis for the following diseases? Muscular dystrophy
(MD); Down's syndrome
(DS); Schizophrenia (S)
(%) MD DS S
Yes 36 37 28
No-Although possibility, leave as it is
44 43 47
No- Scared of test
1 1 0
No- Other 20 19 25
(9, 7, 9% Depends on situation; 3% Playing God; 1.2% eugenics)
Q15. Would you use preimplantation diagnosis for the following diseases...?
Muscular dystrophy (MD); Down's
syndrome (DS); Huntington's Disease (HD)
(%) MD DS HD
Yes 38 36 37
No- Don't want children 2 2 2
No- Selection is playing God 32 34 32
No- Sounds expensive 1 1 1
No- Other 19 20 19
Don't know 8 7 9
In all three examples, answers to No-Other, were similar with 6% playing God, 4% eugenics, 4.4% Depends on situation (4% from Down's), and a few other infrequent reasons.
In both Q14 (DNA diagnosis) and Q15 (Preimplantation diagnosis) there is no significant difference in response between MD and Down's syndrome. There is lower acceptance of Q14 for schizophrenia. In Q15 there is no difference given for Huntington's disease. The responses to specific diseases mentioned in Q14 and Q15 are more negative compared to the general personal question in Q11. This could suggest either people do not like to select a specific disease; or they consider these diseases less severe than the general case.
In the responses given to the standard questions shown above, on general availability of fetal diagnosis under health insurance, or personal use, we can assess the reasoning that both A95 and doctors had. While they had significantly lower acceptance of diagnosis (see the Table below for further comparisons between groups), there were significantly more comments suggesting support for eugenic thinking, "improving genes", "economy" (some economy comments were concerns about the cost of tests rather than saving money in society), as well as more specific concerns against prenatal diagnosis "fears of misuse or eugenics", "unnatural", "ethics", than the public or medical students in 1993. Therefore it appears that these groups have more polarized views than the public.
The feelings towards persons with a range of diseases were surveyed among A95, as shown in the Table. The most familiar disease was alcoholism, with 64% saying that they knew someone with this disease, and the least familiar by personal contact was leprosy. In general we could say that the persons were fairly familiar with persons with genetic disease, something which has been sometimes found to be linked to more negative feelings towards fetal diagnosis (and other times not).
The genetic and environmental contributions to all these diseases were asked, and about 30% did not respond. This compares to 60-70% who did not respond to the feelings question in the same table. The knowledge of genetic and environmental contributions was generally consistent with the actual contributions, but there were some mistakes, for example MD, HD, H are genetic diseases, but some environmental affects by mutagenesis could be involved if this was in the minds of the persons. However, the HD results suggests some were guessing answers. The answers are complex as any proportion could be described to total 100%.
Among the feelings, the most common feelings
were sympathy as in the public and students in 1993 (Macer, 1994b).
For AIDS, and alcoholism the negative feelings of rejection and
depends on reason ill were cited more.
(Q10): Some genetic diseases can be predicted in the fetus during the early stages of pregnancy. Do you think such tests should be available under government-funded Medicare? Why?
(Q11): Would you want such a test during (your/your spouse's) pregnancy? Why?
|Right to know||12||11||12||4||12||18||9||3|
|Health is right||16||16||13||20||0||0||2||5|
|Fetus right to life||5||7||2||1||4||5||1||2|
|% respondents (A95)|
|Know someone %||24||33||17||38||50||15||53||64||59|
|80+% genetic cause||3||57||3||43||40||39||24||1||10|
|50-79% genetic cause||2||8||5||3||7||8||14||8||32|
|<50% genetic cause||61||4||56||6||17||3||20||69||24|
|Not stated (N=175)||62||63||66||63||64||71||67||64||62|
|Sorry / Sympathy||7||11||6||10||7||8||7||5||8|
|Rejection / abnormal||1||1||1||1||1||1||1||1||1|
|Want to help, but.....||2||3||1||3||3||1||1||5||3|
|Depends reason ill||5||0||0||0||0||0||0||0||0|
|People are same||4||5||7||5||5||3||5||2||5|
|Can happen to every||0||1||1||2||1||1||1||1||1|
|Dangerous / afraid||0||2*||2||0||0||0||0||0||2|
|Happy about therapy||5||2||1||3||2||1||3||1||3|
*"Afraid & Risk" in
Hemophilia usually means afraid of them hurting themselves, not
The results of questions on the privacy of persons with a genetic disease or HIV were more distinct than the public or students (Macer 1994). There was rejection of giving information to employers or insurers, and also less support than the public to share the information with the spouse of family.
Q If someone has HIV (the AIDS AIDS virus),
who else besides that person deserves to know that information?
Yes No Don't Know
Employer 14 74 12
Insurer 10 75 15
Spouse or fiance 89 5 5
Other immediate family 76 11 13
Q. If someone is a carrier of a defective
gene or has a genetic disease, who else besides that person deserves
to know that information?
Yes No Don't Know
Employer 8 81 11
Insurer 11 75 14
Spouse or fiance 84 7 9
Other immediate family 77 11 12
The results of the questions on the approval of gene therapy by A95 are shown in the Tables. A comparison with the other groups shows that they are less willing to support gene therapy than the public in 1993. The results from the telephone survey also find less people agreeing and more people say that they do not know. The P95 survey was conducted at the end of 1994, early 1995, when their was discussion in the media of the eminent approval of the Hokkaido University gene therapy trial, however, that trial did not commence until August 1995. Therefore the differences could be due to the different methodology, and may suggest that there are more people uncertain of gene therapy than mail response surveys suggest (Macer et al. 1995). Whether the trend for increased willingness to accept gene therapy seen between P91 and P93 has reached a peak is uncertain, and it will be interesting to investigate opinion in another year or two when there have been more gene therapy trials in Japan.
There was generally no statistically significant
difference with demographic characteristics, however, in A95 there
was a significant difference in the acceptance of gene therapy
There were more
serious religious believers among members of Japan Association
of Bioethics (A95) than other samples in Japan. By using the
scale: 1 = very willing, 2 = somewhat willing, 3 = somewhat unwilling,
4 = very unwilling: the average values for the respondents who
answered that religion was very important, somewhat important,
not too important or not at all important, for personal use was
2.72, 2.12, 2.11, 2.00, and for child's use, 2.29, 1.90, 1.89,
1.24, respectively. The difference between those who said religion
was not at all important and very important was significantly
Approval of fetal diagnosis & gene therapy in groups in Japan
|Approval of fetal diagnosis being available under health insurance|
|Approval of fetal diagnosis in personal pregnancy|
|Approval of gene therapy on yourself*|
|Approval of gene therapy on your children*|
*Yes = Yes, or Very willing and somewhat willing
No = No, or Very
unwilling and somewhat unwilling DK=Don't Know
|Improve quality of life||5||10||4||5||13||8|
|Depends on situation||11||9||17||16||13||13|
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?
Children: 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?
The A95 survey is the only survey of these
that has been conducted after the actual gene therapy trial in
Hokkaido University. Therefore a set of questions about that
particular trial were asked. We found 92% said they had heard
of the trial, 53% said that they knew the name of the disease
but only 31% could correctly name the disease (ADA deficiency
or immunodeficiency) that is the subject of the trial. We also
asked them the question:
"Considering the gene therapy that is done now, how do you
think about gene therapy in the future in Japan?", and the
responses were: 13% Not stated, 3% Don't know; Benefits: 0.4%
For family benefit, 12% save life, 1% health care is right, 1%
Improve quality of life, 4% Right to choose such medicine, 8%
another benefit; Concerns: 4% need ethics committees, 6% need
to be open to public, 11% said it depends on situation, 4% ethics,
2% play God/unnatural, 2% economy, 2% misuse, 0.4% eugenics, 15%
had health concerns, 10% another harm.
Images of Life
At the end of the questionnaire there was the following question, "Will you please express freely, in sentences and/or pictures, the images which come to mind when you hear the word "life", and/or any ideas you have on "life"?", which is the same question used at the end of the International Bioethics Survey in 1993 (Macer 1994b), originally made by Morioka. The open comments to this question are available, and the results of categorization are in the table. The results are generally similar, except for the lack of comments by A95 about living things and an increased frequency of mentioning harmony. Most of the questions between these surveys were common, therefore the difference may not be due to the effects of other questions.
It is interesting that significantly
less comments were made about life and death in A95, especially
given the significantly older average age compared to the other
|% total respondents|
|To be saved||32||17||22|
|Life & Death||27||17||11|
|Family / friends||1||1||2|
The results of these surveys suggest that there are some significant differences in the approval of fetal diagnosis by members of the Japan Association of Bioethics (JAB), and University doctors in Japan from the general public, scientists, high school teachers and students. This is despite similar or more positive views on the general benefits of science to society. This result makes us ask whether the JAB does represent the general community views in some questions of bioethics.
There are two major demographic distinctions of the A95 group compared to all other samples, the older age, and increased religiousity. They generally had high educational qualifications, income, and had more male than the public, however, these characters were shared by the 1991 academic and scientist samples. However, generally we did not see many age associated differences, and if there was a tendency actually older respondents of A95 were more accepting of gene therapy and fetal diagnosis than younger. While we could link greater religiousity of A95 with more negative opinions to selective abortion and fetal diagnosis, this result was not seen within the public samples, and also was not reflected by the international comparisons (Macer, 1994b; Macer et al. 1995).
The greatest difference between the A95 and the doctor samples are that they are selected groups of the population, doctors could be expected to value life more because they attempt to save life in their vocation (though this should be confirmed by data), and members of JAB share the similar interest to study bioethics. "Bioethics" has a somewhat suspicious attitude to biotechnology because it includes technology assessment as one of the ideas, but in this survey we only found negative feelings towards human genetic applications not to other applications of science.
The images of bioethics that A95 and Doctors had were rather similar to the public. What is internationally interesting is the high proportion of comments about respect for life, among groups that should have thought about practical issues as well. As discussed above, in high school teachers in Australia and New Zealand much more practical ideas were expressed than the vague concepts (Macer et al. 1996a). This result has implications for cross-cultural comparisons and would be interesting for study among members of Bioethics Associations in other countries. The balance between practical and theoretical concepts could be an important of the maturity of bioethical reasoning, yet we could not say that doctors were not practical, having had to face decisions about saving life.
The mail response method does suffer from
a low response rate, even among academics specializing in the
field. The response rate of 35% achieved through a reminder,
is better than 25% achieved among the public with no reminder
in anonymous letter box surveys, and is similar to the response
rates achieved with social studies teachers in anonymous surveys
in Japan though principals (Macer 1994). However, it is less
than the response rates with no reminders among scientists and
biology teachers in 1991 (Macer 1992). This result suggests that
interest or knowledge in a subject does not necessarily correlate
with response rate.
Macer, DRJ (1992a) Attitudes to Genetic Engineering: Japanese and International Comparisons, Eubios Ethics Institute.
Macer, D.R.J. (1992b) "Public acceptance of human gene therapy and perceptions of human genetic manipulation", Human Gene Therapy 3, 511-518.
Macer DRJ (1994a), Bioethics for the People by the People, Eubios Ethics Institute, Christchurch, 1994.
Macer DRJ (1994b), Perception of risks and benefits of in vitro fertilization, genetic engineering and biotechnology, Social Science & Medicine 38: 23-33.
Macer, D.R.J., et al. (1995), "International perceptions and approval of gene therapy", Human Gene Therapy 6: 791-803.
Macer D., Hosaka T., Niimura, Y. & Umeno, T. "Attitudes of university doctors to the use of advance directives and euthanasia in japan", EJAIB 6 (1996, In Press).
Rothenberg LS, Merz, JD, Wenger NS, Kagawa-Singer M, Macer DRJ, Tanabe N, Fukuhara S, Kurokawa K, Fuenzalida-Puelma HL, Figuueroa P, Meran JG, Bernat E & Hosaka T. "The relationship of clinical and legal perspectives regarding medical treatment decision-making in four cultures", Annual Review of Law and Ethics 1996 (In Press).
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