Journal: Human Gene Therapy 3 (1992), 511-8.
Author: Darryl R. J. Macer
Clinical trials of gene therapy are underway in different countries, and further countries can be expected to use gene therapy soon. Little remains known, however, about public perceptions of gene therapy. Nationwide mail response opinion surveys were conducted in Japan in August-October 1991, and 54% of the public, 65% of the high school biology teachers and 54% of the scientists who responded, said that they would be willing to use gene therapy, and 66%, 73% and 62%, respectively, said that they would be willing to use gene therapy on their children. There appears to be growing acceptance of gene therapy in Japan, though about one quarter of the population are against it. The underlying reasoning behind the acceptability of human genetic manipulation, and perceived benefits and risks are presented, and these were found to be generally similar to reasoning expressed in a similar survey conducted in New Zealand in May 1990. Public perceptions are also compared to those in Europe and the USA. People perceive both benefits and risks from genetic manipulation. There appears to be more teaching of ethical, social and environmental issues associated with genetic engineering in senior high school biology classes in New Zealand than in Japan. In Japan and New Zealand about 90% of the public would support including discussion of social issues associated with science and technology in the curriculum.
There are a number of human gene therapy trials currently underway in several countries. There have been numerous human gene transfer or therapy trials approved by the Recombinant DNA Advisory Committee (RAC) in the USA, and trials approved in China, France, Italy and the Netherlands (Anderson, 1992a). There is presumed public support for therapeutic use of somatic cell gene therapy in many countries, seen in the numerous international reports issued on the subject (Walters, 1991, Clothier et al., 1992).
Research relevant to human gene therapy is being conducted worldwide, and all countries will face the question of when to allow clinical trials. Public opinion is an important factor in deciding when to permit the commencement of clinical trials, and also on how rapidly medically effective therapy will be introduced into standard medical practice. However, public opinion has not been investigated in many countries.
Elaborate regulatory systems have been established in some countries, especially in the USA, partly as an attempt to balance support for use of a new therapy against fears of human genetic engineering. The public consensus for clinical trials of gene therapy was found in the USA before clinical trials proceeded (OTA, 1987). A trusted regulatory system may allay public fears that gene therapy might be misused, or that it might be extended to enhancement uses beyond what is medical therapy. Another issue is whether any genetic change will be inheritable, and this is an important issue for current debate (Anderson, 1992b, CIOMS, 1990, Juensgt et al., 1991). Although there may be public consensus for the use of experimental medical therapy in most countries, still in some countries there is much debate about any clinical application involving human genetics.
In Japan, medical genetics is still being introduced to medicine and "genetics" may still be a taboo word in traditional regions (Fujiki and Macer, 1992). Therefore it is interesting to examine perceptions of genetic technology in Japan, especially among groups with differing educational backgrounds. This paper describes the results of opinion surveys conducted in Japan, and compares them to surveys conducted in Europe, New Zealand and the USA. Several of these questions examined attitudes toward human gene manipulation, and the results are presented here.
This data suggests that there may be public consensus for gene therapy trials to begin in many countries, but there continue to be fears of human genetic engineering. It may be impossible to eliminate such fears, because they are shared by people with relatively high awareness of the technology, as well as those unfamiliar with it. It may also be undesirable to eliminate such fears; perhaps the mixed emotions that people have should be valued and we all should develop the ability to balance risks and benefits, to improve the bioethical maturity of society. Consistent with this goal, there is also high public support for education about the ethical, social, and environmental issues associated with genetic engineering, in Japan and New Zealand.
Questions that had been used in English language questionnaires concerning biotechnology and genetic engineering in the USA (OTA, 1987) and in New Zealand (Couchman and Fink-Jensen, 1990) were translated into Japanese language. Questionnaires were distributed randomly nationwide; the academic and high school surveys were distributed by post in August 1991, and the public and student surveys were distributed by hand in October 1991. Mail response using enclosed stamped and addressed envelopes was requested. Mail response has one advantage over interviews, the longer time for contemplation means that lengthier comments were given to the free response questions and at other points in the questionnaire. However, there may be more possibility for sample bias and the response rate can be lower than interviews. The relevant questions are presented in the tables with the results.
A 45% reply rate was obtained from high school biology teachers (N=228), and a 48% response rate was obtained from academics (N=728) (including 24% company scientists, 31% government researchers and 45% university academics). Scientists (N=555) were defined as academics who had a speciality in natural sciences, medicine or technology (Macer, 1992). A 26% response rate was obtained from the public (N=551). No reminders were sent to non-responders. The questionnaires to the scientists and high school teachers in New Zealand (Couchman and Fink-Jensen, 1990) also used a mail out method, with response rates of 58% from scientists and 64% from teachers. They used face-to-face interviews to the public, as in the U.S. survey (OTA, 1987), which had much better response rates. The student sample was made from random selections of students of the University of Tsukuba (N=151), excluding any students that were taught by the author because their views may have been influenced during classes on bioethics, and from university students among the public respondents (N=53).
In Japan an interview method was attempted at first for the public sample, but a high refusal rate was experienced, so the mail method was adopted. A response rate of 26% is still a low rate, and this must raise questions about the statistical reliability of the results. Part of the reason was the length of the questionnaire, but a response rate to mailed surveys of about 30% is common in Japan. The sample characteristics were similar to the population (Macer, 1992), and the level of awareness of the word "biotechnology" (97%) was the same as that obtained in a January 1991 survey conducted using randomly chosen government "public opinion monitors" of the Prime Minister's Office (Agency for the Environment, 1992).
Awareness of Genetic Manipulation of Human Cells
A general question found that 85+% of all respondents had heard of human cell genetic manipulation (Table 1). The level of awareness of genetic manipulation of human cells in Japan in October 1991 was significantly higher than that in New Zealand in May 1990. This could be due to the publicity associated with the first human trials of gene therapy.
However, acceptability of human cell genetic manipulation was significantly lower in Japan than in New Zealand (Table 1). Human cell genetic manipulation was seen as unacceptable by 74% of the Japanese public, which compares to 19%, 27% and 46% who saw genetic manipulation of plants, microbes and animals as unacceptable, respectively (Macer, 1992). This result illustrates that even if people are aware of a technique they may not accept it. It could also mean that the publicity, via the media, may have been negative. However, within both countries, scientists were more accepting than teachers, and teachers more accepting than the public. Also, within every group there were significant trends for those who were most aware of "genetic engineering" and "genetic manipulation" to be more accepting of its use.
In the OTA survey in the USA, when people were asked a general statement about changing the genetic makeup of human cells, 42% said they thought it was morally wrong and 52% thought that it was not wrong. In that survey 24% said that they knew almost nothing about genetic engineering, and 39% said relatively little, with 35% saying that they knew a fair amount (OTA, 1987, Q17a). There was a higher acceptance of genetic manipulation in human cells, with an average 4.5 on a scale of 1-10 (acceptable), in the USA (OTA, 1987, Q17c) than there was in Japan (73% said unacceptable). In all three countries genetic manipulation of human cells was least acceptable, compared to animal, microbes and plants.
|The results are marked as %'s of those who answered the question in Japan (Macer, 1992) and New Zealand (NZ) (Couchman and Fink-Jensen, 1990).|
|How much you have heard about manipulating genetic material in human cells?
1 I have not heard of this
2 I have heard the words but no more
3 I have heard the words and have some understanding of the idea behind it
|Is genetic manipulation of human cells acceptable to you for any reason?|
|Could genetic manipulation of human cells provide benefits for Japan (NZ)?|
|Could genetic manipulation of human cells present serious risks or hazards in Japan (New Zealand)?|
Table 2 Reasons given for unacceptability
of genetic manipulation
The values are expressed as %'s of the respondents who answered
that it was unacceptable. Values written in small figures are
those obtained in New Zealand (Couchman and Fink-Jensen, 1990).
|Number who said it was unacceptable||758 370||97 117||79 240|
Interfering with nature
|Unethical||16 6.8||43 17.9||8 13.3|
|Disaster, out of control||16 7.0||12 4.2||14 4.2|
|Fear of unknown||8 8.4||11 13.7||10 14.6|
|Ecological Effects||7.8||0 2.6||0 1.7|
|Humanity changed||4.3||6 3.4||7 4.2|
|Insufficient controls||7 3.8||19 9.4||21 20.0|
|Danger of human misuse||9 4.1||12 12.8||11 9.2|
|Eugenics, Cloning||5 5.1||10 8.5||5 5.0|
|Deformities, mutations||3 2.4||2 2.6||2 2.0|
|Human health effect||5 1.1||3 1.7||2.1|
|Not stated||9 26.8||17.9||3 28.3|
Public opinion is subject to change, and additionally the survey of the Japanese public had a relatively low response rate. A more valuable result from this survey than the statistical values was the attempt to look at the reasoning behind the responses. Respondents were asked to give their reasons why they found genetic manipulation of human cells unacceptable. The analysis of comments was performed by categorization of the reasons expressed in each comment. A total of 38 "reason" categories were used, and each comment was generally assigned to 1-2 of these and scored as 1 point. These results are presented in Table 2, with comparisons from New Zealand where possible (Couchman and Fink-Jensen, 1990), based on the number of people who said that the techniques were unacceptable.
In Japan the major reasons expressed were that it was interfering with nature or playing God, which was expressed by 32%, 15% and 16% of the public, teachers, and scientists, respectively. These values are similar to those expressed in New Zealand (Couchman and Fink-Jensen, 1990), but only a combined result was presented. Scientists were most concerned about the controls on the techniques, which 20% in both Japan and New Zealand cited as a reason for the unacceptability of human cell genetic manipulation. Additionally about 20% of the respondents from all samples who said that human cell genetic manipulation was acceptable, spontaneously added a comment that it had to be controlled carefully and not misused. It is clear that most people extrapolate the phrase "human cell" to "human". (The phrase human "cell" was only used to be consistent with the international surveys so as to allow comparisons.)
Perception of Risks and Benefits of Human Genetic Manipulation
Further insight into the reasoning for acceptability of genetic manipulation came from the following two questions, about perceived benefits and risks (Table 1). In spite of the high public unacceptability, 41% did see benefits from this technique for the nation in Japan. The results of the question regarding the benefits in Japan were more similar to the New Zealand values than were the results of the acceptability question. However, there was a significantly higher perception of risk in Japan, especially among the public and high school biology teachers, than in New Zealand. More of the respondents who said that genetic manipulation was unacceptable said so because of perceived risks than because of perceiving no benefit.
Japanese scientists perceive somewhat less concern than the public for genetic manipulation of human cells and animals, but they perceive a similar level of concern about genetic manipulation of plants and microorganisms. High school biology teachers perceived both significantly more risks and significantly more benefits from genetic manipulation than the public. Respondents from all groups cited numerous and varied examples of their reasoning for acceptability of genetic manipulation as discussed (Table 2), and their perceived benefits (Table 3) and risks (Table 4) from genetic manipulation, and also about their concerns about consuming foodstuffs made from GMOs (Macer, 1992).
The major benefit of human cell genetic manipulation cited by respondents in all groups were medical interventions, including curing or prevention of genetic disease, disease control and cancer cures (Table 3). The question was deliberately phrased to refer to national benefits, and it was interesting to see that more public respondents wrote comments that the benefits should be seen in terms of the whole world or humanity, than teachers or scientists did, in both New Zealand and Japan.
In a recent European public opinion poll in the U.K., France, Italy and Germany (performed in 1990 by Gallup for Eli Lily, N=3156, Dixon, 1991), the respondents were asked to choose from a list the most important benefit they saw coming from biotechnology. Over half rated cures for serious diseases as the most important benefit, and one quarter chose reducing our dependence upon pesticides and chemical fertilisers. It appears that in all countries medical advances, and the ability to cure genetic diseases are the major benefits people see from genetic engineering and biotechnology. Microorganisms are seen for medical use and production of useful substances. Plants and animals are seen for their obvious agricultural importance, and genetic manipulation is perceived for its ability to aid the breeding of new varieties, and to increase production of food (Macer, 1992).
The comments cited for risks of human cell genetic manipulation in Japan were more varied than those cited for benefits (Table 4). The risks or hazards that were perceived are related to the reasons given for unacceptability of genetic manipulation, but there was relatively more concern expressed about danger of human misuse and human health effects.
In the 1986 public opinion survey in the USA (OTA, 1987) people were asked a related, but more general, question, "Have you heard about any potential dangers from genetically engineered products?". They were asked to cite one danger. Only 19% said that they had heard of a potential danger, and from a total of N=285 of these people, 35% did not state a reason (after saying yes), a similar proportion to that found in the risk perception question in Japan (Table 4). Other responses were; difficult to control, spread 16%, health hazards and harm 12%, would create mutants 10%, environmental harm or contamination 7%, unforeseen consequences 7%, create new diseases 6%, cause cancer 6%, danger of consumption of products 3%, cause side effects 3%, create antibiotic resistant disease 3%, and other reasons were cited by 18%.
The respondents to the European opinion poll described above (Dixon, 1991) were asked a similar question to the one they were asked about benefits, what was their largest concern about biotechnology and genetic engineering. Eugenics was chosen by 40% of French, 35% of Germans, and 25% of British and Italian respondents, and environmental harm was chosen by 34% in Britain, 33% in France, 22% in Italy and 21% in Germany. Potential health hazards from laboratory genetic research were named by 29% in Italy, 17% in France, 11% in Britain and 10% in Germany. Overall one third of respondents felt that biotechnology is ethical and one third felt that it is unethical, and one third thought it is in between, "neither". From the results of the surveys conducted in New Zealand and Japan, it is clear that eugenics is not so frequently cited in free response questions (Table 2, 4), as the number who will agree with it in a specific question. We must question the reliability of opinion polls that ask respondents to agree with specific reasons for their perceptions of benefits or risks.
Values are expressed as %'s of the respondents who thought that
there were benefits. Values written in small figures are those
obtained in New Zealand (Couchman and Fink-Jensen, 1990).
|Number who said there was a benefit||638 176||113 113||94 306|
Cure or prevent genetic disease
|Disease control||31 14.8||12 19.5||20 19.9|
|Medical Advance, cancer cure||18 8.5||28 17.7||58 11.8|
|Make useful substances||0.6||0||1.0|
|Increased quality, improvement||5.1||0 0||1.3|
|Scientific knowledge||7 1.7||1 6.2||2 5.2|
|Humanity and whole world benefits||22 14.1||4 3.5||11 9.1|
|Exports increase, economics||4 6.3||0 0.9||2 1.6|
|Not stated||20 35.2||16.8||3 23.9|
Table 4 Risks of genetic manipulation cited by respondents
Values are expressed as %'s of the respondents who thought that
there were risks. Values written in small figures are those
obtained in New Zealand (Couchman and Fink-Jensen, 1990).
|Number who said there was a risk||981 404||83 184||97 372|
Unethical, ethical abuse
|Playing God, unnatural||8 8.7||8 4.9||2 3.8|
|Disaster, out of control||25 6.4||15 3.3||22 5.9|
|Fear of unknown||13 11.6||10 12.5||18 14.2|
|Ecological effects||8.9||0 6.5||0 4.8|
|Biohazard, spread of genes||0.7||4 2.2||2.4|
|Danger of human misuse||11 10.1||17 14.1||16 22.0|
|Cloning, human reproduction abused||6 2.7||15 3.8||7 2.7|
|Humanity changed||9 6.2||8 3.3||5 9.4|
|Deformities, mutations||23 5.9||11 12.0||2 5.9|
|Insufficient controls, need public discussion||11 5.4||10 3.8||19 9.7|
|Economic corruption of safety standards||1.2||0.5||1.6|
|Not stated||14 39.9||28.3||9 30.6|
There was much higher public approval of specific applications of human cell genetic manipulation to cure serious disease, and the results of questions on acceptance of gene therapy are presented in Table 5. An examination of the mean of the respondents who answered the questions with a response other than "don't know" does show some significant trends. Teachers were most accepting of both questions, and were significantly more willing (P<0.01) to undergo gene therapy on themselves than other groups, showing similar support to the US public. Like the US survey, there was greater acceptance of using gene therapy in children than for personal use.
There was no significant correlation with the responses to these questions on gene therapy and the level of awareness of genetic manipulation, educational level, sex, or age. Some people gave comments and reasons for their choices; some examples are reproduced in Macer (1992). The overall results from the samples of scientists, high school biology teachers, and the public are similar, though the scientists showed significantly higher uncertainty of response than the public and teachers. As in questions asked about genetic screening (Macer, 1992), there is a much higher proportion of undecided respondents in Japan than in the USA (OTA, 1987).
In two public opinion surveys conducted by the Japanese Prime Minister's Office using interviews with 74% response rates (N=7439, PMO, 1986, N=2380, PMO, 1991), people were asked whether they thought it was good for humans to use gene therapy to cure genetic disease. In December 1985 45.7% said yes, 29.5% said no, and 24.9% didn't know. In October 1990 52.3% said yes, 23.9% said no, and 23.8% didn't know. The results of the Prime Minister's Office surveys are consistent with the values obtained in the current survey, though the questions were somewhat different. There is, however, stronger support for the use of gene therapy on children or for personal use than in the general case, which was the situation examined in the public opinion surveys by the Prime Minister's Office. The responses expressed in surveys obviously also depend on the circumstances that people have experienced. There is support for gene therapy to treat disease in Japan, and only about one quarter of the population are against it, and this proportion may be decreasing since 1985.
|Q13. 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?|
|1. Very willing||25.2||19.7||34.8||23.7||25.4||35|
|2. Somewhat willing||29.1||31.8||30.4||28.9||28.1||43|
|3. Somewhat unwilling||18.0||26.8||11.1||15.1||15.6||12|
|5. Don't know||16.0||12.1||13.0||18.9||17.3||2|
|Mean of 1-4||2.19||2.30||1.97||2.22||2.21||1.97|
|Q14. 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?|
|1. Very willing||36.9||28.4||39.5||30.3||32.1||51|
|2. Somewhat willing||29.3||37.6||33.2||31.7||30.1||35|
|3. Somewhat unwilling||11.2||11.3||5.8||9.5||9.7||7|
|5. Don't know||15.6||17.5||13.4||21.0||20.5||3|
|Mean of 1-4||1.86||1.92||1.80||1.93||1.91||1.63|
Table 6 Teaching about the issues associated with genetic
engineering in Japan
Do you think more room should be made in the curriculum for discussion of these issues associated with genetic engineering?
|Number who responded||217||363||295|
|Yes, social issues (%)||49.8||62.1||61.4|
|Yes, ethical issues (%)||53.0||63.2||61.8|
|Yes, environmental issues (%)||70.4||73.6||74.2|
To what extent do you agree or disagree with the following statement?
"Students should be informed about the social issues associated with science and technology so that they can participate in contemporary debates"
Public understanding of the issues associated with genetic engineering requires much improvement so that people can make educated and informed choices about the use of genetic technology. Public education is required, at all levels. In order to look at how willing people are to support the education of these issues in schools and universities, a question was asked, whether students should be informed about the social issues associated with science and technology so that they can take part in contemporary debates. As the results show (Table 6), there is strong support with this statement. In New Zealand, 86% of high school biology teachers agreed (Couchman and Fink-Jensen, 1990), compared to 93% in Japan. This is a clear mandate for inclusion of these issues in the curriculum in Japan and New Zealand.
Teachers at high schools were also asked whether they had taught about ethical, social or environmental issues associated with genetic engineering during the last two years of high school. The values in Japan (N=218, Macer, 1992) and New Zealand (N=261, Couchman and Fink-Jensen, 1990) can be compared (the New Zealand values are given in parentheses). There were significant differences; 64% (83%) had taught about genetic engineering in high school, 41% (89%) had discussed in class the social issues, 51% (95%) had discussed the ethical issues, and 58% (80%) had discussed the environmental issues associated with genetic engineering, while 19% (2%) had not discussed any of these issues in class. There was somewhat more support for inclusion of these issues in the curriculum (Table 6), though some teachers who had taught about these issues did not support their inclusion in the curriculum, even though they supported discussing these issues with students. This area requires further research to determine what issues might be appropriate to include, and how they might be taught. There appears to be much more teaching of these issues in New Zealand school biology classes than in Japan, though it is a question for further research on how well these issues are taught.
The results obtained in Japan can be compared with the results from the surveys in New Zealand and USA, but it must be noted that the method of sampling of the public differs between these surveys. The survey results from Japan are not based on a random sample, but represent the views of respondents. Some estimate of the uncertainty of the values can be estimated by comparison of the results obtained from the different samples in Japan. The views of the public, students, high school biology teachers, scientists and academics in general were very similar for many questions, and the reasoning appeared to be similar. Overall, there appeared to be more homogeneity in the views of these groups in Japan than there was in the results of studies conducted in New Zealand, and less education-dependent difference in opinion about genetic engineering in Japan than in the USA (Macer, 1992).
These results indicate that the Japanese public would welcome the use of gene therapy in Japan to treat serious diseases. The approval of gene therapy may be common to different countries, and it may be feasible to develop common international guidelines which are widely acceptable at a national level. International discussion of the ethical issues should occur, in the light of this similarity of attitude, rather than attempting to infer sociological and anthropological conclusions based on putative cultural differences.
It would be interesting to ask free response questions in Europe and North America currently, and to collect the results. Nevertheless, the comparative results between New Zealand and Japan allow some East/West comparison. There is as wide a diversity of views expressed among Japanese, as there are among New Zealanders. The finding that they generally have similar concerns, in addition to sharing some of the same hopes, suggests that there is much similarity in the ideas associated with genetic engineering among people of industrialised countries. This is not very surprising, given that scientific research is international, and many of the media stories are also internationally presented. There is little support for the idea that Japan has any special reasoning in this area, compared to New Zealanders or Americans, and further international studies including people in developing countries would allow us to look at more international reasoning associated with genetic manipulation. Such studies are required before broader conclusions about the sociological and anthropological aspects can be drawn on an international level.
The depth of reasons expressed for all the responses, on acceptability, benefits, and risks, indicate that at least some members of the public have thought about these issues. The Japanese public sometimes has the image of being complacent; however, a significant number of respondents did express well developed and lengthy comments about these questions (some examples of comments are reproduced in Macer, 1992). They also indicate that people can simultaneously understand that new technology is associated with both benefits and risks. From the large proportion of respondents who answered "don't know", it is clear that many are still thinking about these issues, and public education is required to enable an informed discussion about the limits of applications.
International studies of the perceptions that people have of genetic manipulation and of human gene therapy are needed. The educational level of people needs to be improved so that more can take part in the debate, and so that individuals can decide whether to personally use therapeutic gene therapy. It appears that there may be wide societal support for the use of gene therapy in many countries. In particular, before deciding whether or not to embark on germline gene therapy, or deciding where to draw the line with respect to enhancement gene therapy, wide discussion of these issues should be encouraged, bringing both the benefits and risks to the debating table and find out what people think.
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