- Masakazu Inaba and Darryl Macer Eubios Ethics Institute; <http://eubios.info/index.html> Institute of Biological Sciences, University of Tsukuba, Tsukuba Science City, 305-8572, Japan. Email: firstname.lastname@example.org
Each society has developed a system by which citizens deal with life and questions that it poses. The development of new technologies in medicine has raised ethical, social, legal issues (ELSI). Consistent with the ethical principle of avoiding harm, applications that have a risk of harm to the wider society beyond the individual should proceed after public acceptance that the risk of harm is acceptable. Policy makers need to be sure of the public understanding and acceptability of risk associated with applications of medical biotechnology.
The interventions planned in the sphere of genetic technology will affect not just ourselves, in medical uses, but already have affected our agriculture, microorganisms, plants, animals and possibly entire ecosystems. Such an increase in our ability to change life-forms in biology, and especially medicine, and the moral issues attendant upon them, is reflected in the concentration of attention that has given birth to the newly-described science of "bioethics". Bioethics is the systematic study of human conduct in the area of the life sciences and health care, in so far as this conduct is examined in the light of moral values and principles.
There are four main approaches to bioethics (Macer, 1998). One is descriptive bioethics, which is to look at how people view life, their moral interactions and responsibilities with living organisms in their life. A second is prescriptive bioethics, which is to tell others what is ethically good or bad, what principles are most important in making decisions, or someone has rights and duties. A third is interactive bioethics, which is to discuss and debate between people, groups within society and communities about descriptive and prescriptive bioethics. A fourth is practical bioethics, like environmental activism that applies moral ideas into action. Opinion surveys are useful instruments for descriptive bioethics, and they can provide understanding of the way people reason over applications of technology. This descriptive data should be used in society to inform and develop policy on the use of technology.
Surveys of the attitudes of Japanese people towards biotechnology have found a positive view of science and technology (Macer and Ng, 2000). The attitudes of the Japanese public to biotechnology were examined in a 1991 survey using random mail sampling (Macer, 1992, 1994a), a 1993 survey using random mail sampling (Macer, 1994b), and in a 1997 survey using telephone interviews (Macer et al., 1997). One purpose of social surveys is to assess the changes in views of society over time. We are also interested to seek what kind of communication is required between the public and professionals over applications of modern biotechnology that will be used by the public. In order to answer these questions, Macer, Ng and colleagues conducted an opinion survey throughout Japan during November 1999 to February 2000 (Ng et al., 2000). Attitudes among the public and scientists towards six applications of genetic engineering were compared. From November 2002 to February 2003 another nationwide mail response survey was conducted on the public, and opinions were compared. This paper presents the results of the analysis of questions on the application of biotechnology illustrating a methodology for analysis of open comments to examine people's reasoning.
The questionnaire was designed referring to questionnaires of Japanese public telephone interviews in 1997 (Macer et al., 1997), and a modified Eurobarometer 46.1 survey (Einsiedal, 1997, Gaskell et al., 2000). This paper presents the results of analysis of some of the questions in depth, and the raw results for some other questions have been published (Ng et al., 2000; Inaba and Macer, 2003). In order to understand whether people differentiate the various applications of genetic engineering in terms of perceived benefits and risks, and moral acceptability, respondents were asked whether they have heard of the applications (sub question a), followed by 5-point self-indicated scales of agreement (1. Definitely agree 2. Agree 3. Disagree 4. Definitely disagree 5. Don't know). In the 2000 and 2003 surveys blank spaces allowed respondents to write down the reasons for their attitudes on the benefits (utility) (b), risks (c), moral acceptability (d) and overall encouragement (e) for each application. An English translation of the series of questions that were asked in Japanese is written in Table 1.
The surveys were randomly distributed in unnamed cover envelopes to the public, and personally addressed to scientists. The public sample in 2000 (P2000) was obtained by distributing these into the letterboxes of houses at random in representative areas across Japan, and the scientist sample (S2000) was obtained by sending the questionnaires to scientists, randomly selected from lists of Japanese researchers. The survey questionnaires were sent with stamped return envelopes.
In the 2003 survey (P2003) the distributors personally asked randomly selected householders across Japan to complete the questionnaire, leaving it behind with the householders to complete and return. The response rate is thus higher than the 2000 survey and like the 1997 survey; responses were obtained from all 47 prefectures. The response rates were 12% for P2000 (N=297), 20% for P2003 (N=378) and 23% for S2000 (N=370). The responses were obtained from 34 (P2000), 47 (P2003) and 44 (S2000) of the 47 prefectures of Japan. Of the public respondents in 2000, 38% were female, the mean age was 44 years, 71% were married, 65% had children, 40% were university graduates, and 16% had postgraduate training. The demographics were more gender balanced in 2003, as 48% were female, the mean age was 47 years, 71% were married, and 70% had children. The range of occupations represented the range in Japanese society (Ng et al. 2000). The scientist sample was 89% male and the average age was 50 years.
The results of the survey in Table 1 show few in the public sample were not aware of at least one of the four applications of modern biotechnology. The level of awareness of the term "biotechnology" has been high in Japan through the 1990s (Macer, 1992, 1994ab; Inaba and Macer, 2003). Biotechnology was perceived to be beneficial by more persons than genetic engineering in all samples, and more persons thought genetic engineering would be harmful than they did for biotechnology (Ng et al., 2000). In the 2003 national random survey, the proportion of the public who said that they thought that genetic engineering was worthwhile stayed at a similar level to the same questions 1993, being 60% compared to 57% in 1993 (Inaba and Macer, 2003). Only 8% said that they did not think it was worthwhile compared to 10% in 1993. It appears that the peak of concern about genetic engineering was in the year 2000 (Ng et al., 2000).
The 2000 survey included national random samples of scientists, which provides some interesting comparisons for the reasoning. The results of the survey show more of the public and scientists were aware of GM crops than food made by modern biotechnology (Ng et al., 2000). The perceived benefits were similar between the two applications. Around 50% of the public and 60% of the scientists agreed with the utility, while about 40% of the public and 30% of the scientists disagreed in 2000. Similar to the trend of perceived benefits, those of perceived risks, moral acceptability and overall encouragement were similar between the two applications as well. Half of both the public and scientists answered that GM crops were risky. When comparison was made between the public and scientists attitudes on the 5-point-self-indicated scale, no significance was found on the risk perception of two applications. In general, the scientists were more accepting of the two applications than the public. Finally when the respondents expressed their attitudes towards overall encouragement of two applications, 40% of the public and 50% of the scientists expressed agreement similarly towards two applications.
On the question about the usefulness of an agricultural application for better food and drinks, there was a drop in the proportion of people who expressed positive attitudes to 35% in 2003, from 52% in 2000. Risk perception also changed. The proportion of people who thought it was not risky dropped significantly from 35% in 2000 to 20% in 2003. Besides, the proportion of people who answered it is risky increased by 7% from 49% in 2000 to 56% in 2003. However, the awareness of this application among respondents was not as high as in 2000 (55% in 2003, 69% in 2000). Overall attitudes of respondents became slightly more pessimistic (8 points drop for agreement, and 5 points increase for disagreement). Thus despite the general stabilization in attitudes to genetic engineering discussed in the previous section, since 1997, the acceptance of GM food has decreased, revealing the major concern is perception of health concerns to the consumers. This could also be due to the concerns people have because the government decided to label the foods, thus implying some risks.
The trends of self-indicated attitude to use of human genes in bacteria to make insulin are similar to those from the same question that was used in the 1997 survey (Table 1). However, moral acceptability of the public dropped from 56% in 1997 to 44% in 2000, as did the overall encouragement from 66% in 1997 to 53% (Macer et al. 1997). When the open comments were analyzed it was found that more of the public raised negative reasons such as "Ethical Concerns", "We Don't Need", or "Unnatural Feelings". On the other hand, the scientists had more comments in the "Balanced View" group. These trends are widely seen through all the applications. Regarding risk perception, similar proportions of the public and scientists raised comments about "Human Benefits" in usefulness (b) (more than 90% of the respondents), moral acceptability (d) (around 60%), and social acceptability (e) (around 60%). The perception of benefits or utility is greater than that of risks in this application among the respondents.
In addition to awareness and knowledge, understanding is the factor of acceptance of new technologies. In order to measure people's perception of benefits and risks, self-evaluation of respondents' attitudes towards usefulness, risk, and overall encouragement of the applications were scored depending on the degree of their attitudes. In cases of people who definitely agree with the use of the applications, the score will be +6 points. In cases of people who definitely disagree, the score will be -6 points. In other cases people balance benefits and risks, it is conditional approval or disapproval. The score will be in between -6 and +6 points. Figure 1 shows the results of the scoring of 1997, 2000 and 2003 surveys for the public. It is clear that the acceptance of GM food and xenotransplantation has been decreasing.
In order to explore the reason of respondents' attitudes, open comments were combined with self-evaluation scales. Reasons given in the open comments were categorized into 7 broad groups; human benefits, balanced view, risky, ethical issues, we don't need, unnatural, and personal choice. The comparison of the results made between 2000 and 2003 is shown in Tables 2-6. One of the reasons for the decreased acceptance of food applications was less people saw benefits. For medicines, people's attitudes became slightly more positive from 2000, this would be partly increased balanced view. One factor for the decreased acceptance in xenotransplantation was more perceived risks from this application. For genetic testing, there was a significant decrease in the proportion of ethical concerns, while those of risk concerns and benefits increased. Perceived benefits of genetic testing increased. More people saw benefits of medicine. For genetic testing, more respondents expressed more balanced views than they did in 2000, which might lead to more of the public accepting this application.
The perceived benefits were highest for medicines made using bacteria, like insulin, and for the cancer mouse (Table 1; Ng et al. 2000). Around 70% of the public and 80% of the scientists agreed there was utility in these applications. This level is similar to that expressed at the same time in another option for genetically modified foods, such as making better tasting GM tomatoes. However, xenotransplantation was the least acceptable application seen through the series of questions. The results of embryonic genetic diagnosis show it is slightly more acceptable than that of xenotransplantation. These trends were seen similarly among both the public and scientists sample. In general, the scientists were more accepting of the applications than the public.
The analysis of the reasons that respondents gave is described below under headings for each application. Comparisons were made between the frequencies of the agreement for the subquestions bcde (5-point self-indicated scales), and the broad categories of reasons, using chi square-tests. The results from the agreement with the subquestions bcde show significantly higher support for all four medical applications presented below among the scientists compared with the public attitudes (Table 1, ƒÔ2=15.3-55.5, df=4, p<0.01). Removing the effects of the "don't know" response can see clearer attitudes of the respondents. Without "don't know", significant differences were not observed between the public and scientists on the usefulness of xenotransplantation and for the overall encouragement of embryonic genetic diagnosis.
One problem in the use of mail response surveys without reminders, which was not possible for the anonymous public sampling, is the low response rate. One measure of the interest of respondents in the questions is whether they gave a reason when asked to write one. The rates of giving a reason were not significantly different between the public and scientist respondents for the four applications, despite their difference in education level. The two groups sampled, had a similar behavior pattern to give some reasons to the questions. The average number of reasons given per person who stated reasons was between 1.2-1.6. The public gave more reasons in almost all the cases. However, no significant difference in the number of the reasons per person were observed between the public and scientists for each application at p<0.05 level. However, the public gave more variety of reasons for the usefulness of embryonic genetic diagnosis (1.58) than the scientists (1.20) (ƒÔ2=3.29, df=1, p<0.1). The public showed their high interest in genetic diagnosis with the rate between 1.36-1.56 ideas per comment. In most cases, the rates of the scientists were around 1.2 ideas per comment. The least number of ideas for the scientists (1.14) was seen in comments over the moral acceptability of genetic diagnosis, as opposed to the public rate (1.48).
When we compare the attitudes of people who stated a reason with those of who did not state a reason, significant differences were observed between the two groups. In general, there were more risk concerns among those who stated reasons than among those who did not. However, in some cases, there was also greater moral acceptability and encouragement at the same time. This implies that risk, moral and social concerns may be motives to make people speak out.
The reasons that the respondents gave for their attitudes were categorized into a total of 30-40 types differing between questions. For comparisons here, these categories were combined into 7 broad groups, including "Human Benefits", "Balanced View", "Risk Concerns", "Ethical Concerns", "We Don't Need", "Unnatural Feelings" and "Consumers Choice" (Tables 2-5). The reasons for each of the four applications are discussed below.
Modern biotechnology includes technologies which can modify characteristics of organisms without using the method of direct genetic manipulation, or technologies which enhance beneficial attributions of food products or organisms themselves, for example, chemical treatment, screening, cell fusion, or food irradiation for longer food preservation. However, these technologies are more efficient than traditional methods such as simple cross breeding.
There are some controversies about the adverse effects of these applications since these technologies are supposed to be safe in those methods compared to genetic modifications that are direct manipulation of genes in organisms. Therefore, thorough investigations of those end products are often not conducted, when compared with those of GMOs and its derivatives. Regulations on products which modern technologies are applied are not as strict as those seen for GMOs and their derivatives.
Perceived utility and overall encouragement of this application have been decreasing gradually since 1997 (Table 1). Besides risk perception has been increasing in parallel. Thus, as figure 1 shows, overall acceptance has decreased, and dropped into negative side in 2003. Also moral acceptability has dropped by 14% from 45% in 1997 to 31% in 2000. Interestingly, the trend of scientists was similar to those of the public.
The ratios of reasons that the public and scientists raised were very similar in utility and overall acceptance (Table 2). However, except for several parts, such as proportions of risk concerns in perceived risk and balanced view comments in general, similar proportions of each category were seen. More than 60% of the respondents gave "Human Benefits" in usefulness (b) in 2000. Specifically "Human Benefits" group has dropped in 2003 (39%), while other groups were not different over the time. Similarly in the question of social acceptability (e) less people gave comments of "Human Benefits" in 2003 (30%) than they did in 2000 (48%).
Comments in "Human Benefits" include utility of food, improvement of production efficiency, production of better products, environmental benefits, and other benefits. Example comments are below:
"It is necessary to produce foods efficiently to some extent to overcome the shortage of food in the future."
"It is beneficial if it can be kept for long as survival foods, and has a rich food value."
"If it enables us to useful to reduce usage of chemical fertilizer or pesticides."
Other examples of "Human Benefits" show humanity in their comments: "It is good for people who are poor and starving."
Some respondents raised human happiness or convenience in "Human Benefits":
"It can increase happiness of humankind."
"It is indispensable for modern diet that is meal individualization or full of luxury goods."
On the other hand, there were comments against pursuing human happiness:
"It is questionable that anthropocentrism exceeds the limit."
"It is a question that something favorable for human beings is favorable for other organisms in practice."
"Science and technology should be humbly progressed."
Safety concerns were the most common in risk concern group:
"When we eat them, we feel only delicious. However, there is a possibility that accumulation affects human body."
"There is a possibility to increase the number of people who have allergies to the proteins. I'm also concerned about environmental contamination."
"It is against nature, and it is like a safety experiment by using humans."
Comments in risk concerns also include business corruption, losing food diversity:
"Traditional food cultures will be eliminated by enterprises which pursuit benefits."
"There is a fear to expel traditional production procedures."
"It decreases food diversity all over the world, and becomes like space food. Still are human beings happy?"
The questions in 2003 included the above four options (earlier years have included more options (Macer et al. 1997; Ng et al. 2000)), and were:
I am going to show you a list of applications which are coming out of modern biotechnology. For each one, please tell me whether you have heard of the application, then let me know whether you definitely agree, tend to agree, tend to disagree, or definitely disagree with the following questions.
Q11. Using modern biotechnology in the production of food and drinks, for example, to make them higher in protein, keep longer, or taste better.
Q12. Introducing human genes into bacteria to produce medicines and vaccines, for example, the production of insulin for diabetics.
Q13. Introducing human genes into animals to produce organs for human transplants, such as pigs for human heart transplants.
Q14. Using genetic testing to determine whether human embryos have a genetic predisposition for serious diseases such as muscular dystrophy.
Figure.1: Trends in overall support for GM food, GM medicines, xenotransplants and genetic testing from 1997-2003 from Q11-14.
Medicines produced by genetically modified (GM) microorganisms are the only application already widespread in Japan at the time of the survey. Insulin was approved in 1982, and is a classic example of genetic engineering between human and microbes. Some of the public knew this application was used at the moment. The Japanese Ministry of Health, Labor, and Welfare estimated that around 10% people in the Japanese population could not deny the possibility of developing diabetes. Diabetes is one of the common adult diseases in Japan. Japanese people have high familiarity with diabetes, and it is a frequent topic in the media. Since some tragedies such as HIV contaminated blood have occurred in Japan, general safety concerns about medicines have increased. The results of this application illustrate how people have hopes as well as doubts about production of medicines, as well as towards genetic engineering.
The trends of self-indicated attitude are similar to those from the same question that was used in the 1997 survey (Table 1). However, moral acceptability of the public dropped from 56% in 1997 to 44% in 2000, as did the overall encouragement from 66% in 1997 to 53% (Macer et al., 1997).
The ratios of reasons between the public and scientists are significantly different (Table 3, usefulness: ƒÔ2=15.5, df=6, p<0.05, risk: ƒÔ2=19.3, df=5, p<0.01, moral acceptability and social acceptability: ƒÔ2=20.3-20.5, df=6, p<0.01). The public raised more negative reasons such as "Ethical Concerns", "We Don't Need", or "Unnatural Feelings". On the other hand, the scientists had more comments in the "Balanced View" group. These trends are widely seen through all four of the medical applications.
Table 2 shows that 40-50% of the respondents expressed concerns about risk in response to Q7c on risk. Regarding risk perception, the public and scientists raised similarly "Human Benefits" in usefulness (b) (more than 90% of the respondents), moral acceptability (d) (more than 50%), and social acceptability (e) (more than 50%). The perception of benefits or utility is greater than that of risks in this application among the respondents.
Some people knew this application is already practiced in Japan, giving comments like:
"Actually it is useful, and has already been utilized."
"I think that it has already been accepted."
According to the characteristics of diabetes, some people pointed out medicines could not cure the disease, for example:
"Prevention of diabetes has priority."
"Many are just only symptomatic therapies."
"Adult diseases are matters of eating habit. They cannot be cured by medicines."
"It encourages an inclination to cure by medicines rather than to remedy the roots."
Some comments that sound desperate were given, such as:
"Once I get a deadly disease, I'll accept my death."
"We should accept our limited lifetime."
"There is no point in prolonging life unnecessarily."
"It should be progressed, however, I don't need the medicine when I get a disease."
A comment was also about diseases as natural selection:
"It is good for remedy, however, I think disease is a kind of natural selection."
However, some of the public expressed doubts about this application, for example:
"It is a question of whether gene insertion cures 100%."
"It is a fear that bacteria go out of control and change into harmful ones."
"I feel concern about injection directly into human body."
"There are possibilities to produce unintended stuffs, or to commercialize them."
"It is a question whether the development of medicines is required to that extent."
A transgenic cancer mouse for research use was chosen as an example of genetic engineering between humans and animals in the question. This is not making a product to be consumed by people, but such mice are becoming more common in research around the world on a number of diseases, as well as for basic genetics research. Cancers dominate the causes of one third of Japanese deaths. This is a global social concern as cancers caused 46% of deaths over the whole developed world in 1997 (WHO, 1998, http://www.who.int/whr/1998/whr-en.htm). The respondents expressed similarly high acceptability for a cancer mouse as for medicines in GM microorganisms (Table 1). However, the ratios of the broad categories of the reasons are different from those of making medicines in GM microorganisms (Tables 3 and 4).
Social encouragement by the public dropped from 65% in 1997 to 49% in 2000, although the moral acceptability was similar (from 43% saying it was morally acceptable in 1997 to 39% in 2000) and fewer respondents said it had a risk (from 46% in 1997 to 39% in 2000) (Table 1; Macer et al., 1997).
The ratios of the broad categories of reason given in 2000 are significantly different between the public and scientists (Table 4, usefulness: ƒÔ2=18.4, df=7, p<0.01, risk: ƒÔ2=32.7, df=5, p<0.01, moral acceptability and social acceptability: ƒÔ2=17.7-22.2, df=6, p<0.01). General concern, and personal familiarity with cancer might make more of respondents answer with a comment categorized under "Human Benefits" as the reason for overall encouragement (e) (more than 60% of the respondents). At the same time, "Ethical Concerns" among the public for moral acceptability (d) was relatively high (28%). This implies that the possibly some respondents have conflicts about this application in their minds between the social utility and their moral standards towards animals.
Considering the subject of this application, a mouse, is animal, previous surveys have found that there is not a high degree of concerns about animal rights in Japan (Tsuzuki et al., 1998). In Japan, concerns about animal rights are not very high. In the open comments, we could see people were balancing benefits and risk based on sacrifice of animal life, for example:
"It may be necessary for happiness of humankind although I feel sorry for the mice."
"Necessary to some extent for human prosperity."
"It may be necessary because I feel that experimental animals are a necessary evil."
"Although I feel cruel to sacrifices, otherwise it doesn't make development."
"It is inevitable for medical advancement. However, it is desirable to be minimized."
However, some people gave comments that respect animal life:
"It should be beneficial as long as lives are used for experiments."
"All animal lives are equal."
"Concern about moral paralysis toward using experimental animals."
"It is a question whether animals should be sacrificed for human beings."
"Animals should be protected."
There were examples that people were aware of cancers as social concerns:
"Cancer research is a big social concern."
Also some people were aware that some mice were under experiments:
"It has already been done."
"From the fact that the nude mouse is used for development of cancer care."
There were some comments that were positive about animal experiments, like:
"I don't deny the fact that mice have been used for experiments."
"Human beings have performed animal experiments for a long time."
Xenotransplantation of pig hearts into humans was used as another example of genetic engineering between mammals. Organs from human cadavers are not broadly used over Japan (Macer, 1992; Macer et al., 2002). In response to the question on moral acceptability (d), there is a significant increase in the proportion of the public who answered don't know in 2000 (24%) compared to 1997 (14%) (Table 1). Interestingly the proportion of respondents who did not think that the technique was morally acceptable decreased from 39% to 24%, suggesting that people in Japan might be more supportive of xenotransplantation over time as a moral issue. These results might be partly due to the high level of publicity regarding the patients who are waiting for organ transplants that has been made since the enactment of the organ transplant law in 1997.
Interestingly for GM pigs as heart donors (Table 1), the proportion of respondents who did not think that the technique was morally acceptable decreased from 39% in 1997 to 24% in 2000, suggesting that people in Japan might be more supportive of xenotransplantation over time as a moral issue (Macer et al., 2002). These results might be partly due to the high level of publicity regarding the patients who are waiting for organ transplants that has been made since the enactment of the organ transplant law in 1997. However, there was higher support for transgenic mice for cancer research (Ng et al. 2000). Medical need was the most frequently cited reason for the utility of xenotransplants (b), being the biggest proportion in the "Human Benefits" group of reasons among all the respondents (Table 5). However when asked overall whether they thought xenotransplantation should be encouraged (e), a number of comments saying "no need" over-rode comments like "saving life", even among the scientists (Table 5). The major risks (c) that the respondents expressed were those of safety (40% of the respondents) and ethical issues (30%), including animal rights. The proportion of the public who thought it was unnatural to mix animal organs into humans was greater than the scientists (ƒÔ2=5.11, df. =1, p<0.05). The safety issues included not only the fear of infectious viruses, and environmental safety of GMOs, but also fears over intergenerational transmission of genetic changes to the children of the recipients.
Since one quarter of the public answered, "don't know", to see the clear attitudes of the respondents, the effects of "don't know" frequency on 5-point self-indicated scales were removed (Table 1). The results show that there is no significant difference in self-indicated attitudes expressed by the public and scientists on the usefulness of xenotransplantation. Also scientist support in xenotransplantation was not as strong as for medicines made in genetically modified microorganisms or for the cancer mouse.
There is no statistical significance in the reasons given by the public and scientists on perception of usefulness and risk (Table 5). However, the results indicate that there are statistically significant differences on moral acceptability (ƒÔ2=17.7, df=6, p<0.01) and social acceptability (ƒÔ2=14.3, df=6, p<0.05).
Medical need was the most frequently cited reason for the utility of xenotransplants (b), being the biggest proportion in the "Human Benefits" group of reasons among all the respondents (Table 5). However when asked overall whether they thought xenotransplantation should be encouraged (e), a number of comments saying "no need" over-rode comments like "saving life", even among the scientists. The major risks (c) that the respondents expressed were those of safety (40% of the respondents) and ethical issues (30%), including animal rights. The proportion of the public who thought it was unnatural to mix animal organs into humans was greater than the scientists (ƒÔ2=5.11, df=1, p<0.05). The safety issues included not only the fear of infectious viruses, and environmental safety of genetically modified organisms, but also fears over intergenerational transmission of genetic changes to the children of the recipients. There were some scientist comments about social affects on humanity, and on risks (c), 10% of scientists (compared to 3% of the public) gave this type of comment.
These results indicate there are more ethical and social concerns among the public than the scientists, with similar perception of benefits and risks in xenotransplantation as the scientists have. However, it doesn't mean that the scientists strike out the application. The scientists also felt some difficulties compared to the other applications previously described. The perception and value of moral social implications of xenotransplantation are significantly different.
Comments expressing aversion toward this application were commonly seen:
"It is a question whether human beings need to live so much as to use animal organs."
"I feel resistant to obtain human organs from animals."
"I don't want to imagine myself living with a pig heart."
Also comments about human dignity were seen, like:
"It is most dangerous to derogate the true nature of life."
"It is better to think about better life and better death."
"It degrades human dignity remarkably, and animals are used as\ parts."
"I prefer death to transplanting a heart from a pig."
Some respondents stated it is not needed, or they are against human centrism, for example:
"No need to live longer by such a manipulation."
"I don't think it is right to save life that far."
"To die in bed or diseases are one function of life. No necessity."
"It is a terrible human centrism. It goes beyond limitation as one species."
"It is a question that human lives should be saved up as far as sacrificing animals."
A discussion was given pointing out the issue of using organs from dead bodies:
"It is better to think of other ways to produce organs without using animals. Also better to think about organ transplantation from brain-dead bodies."
On the other hand, another comment pointed to a benefit of genetic diagnosis, like:
"There is no need to wait for organ donation from a brain-dead body."
Animal rights and dignity were mentioned in some questionnaires, such as:
"Even pigs have dignity."
"Pigs are not animals to make hearts for humans."
"I feel cruel to animals."
"Human gene transfer harms the dignity of animals."
Also some respondents expressed a concern, for example:
"It is dangerous to regard the thinking that organs are obtainable easily as a common sense."
"A fear to lead to an easy way of organ transplantation."
"Human is deemed parts."
An example of a respondent with a broad view is:
"I disagree with organ transplantation. Huge efforts are made for saving a life. On the other hand, I cannot understand many lives are lost easily by war or hunger all over the world."
Preimplantation diagnosis was used since 1990 in the UK. It is being widely used in some countries. In 2002, the American Society of Fertility Ethics Committee decided to allow its use for sex preselection, and the UK Human Fertilization and Embryology Authority allowed its use for implanting an embryo who would be a suitable immuno-compatible donor for tissue transplants. This advanced technique, genetic diagnosis, is more than just a technique to allow parents at risk of a genetic disease to have a child free of that disease (Harris, 1992), but also it casts questions to society of where we should draw a line on genes to be screened out of the human race (Campbell et al., 1998).
The comparisons with the results of the 1997 survey show significant changes in Japanese attitudes. Both of the public and scientists decreased their interest in genetic diagnosis. In 1997, 63% of the respondents saw it to be useful and 60% said it was a technique to be encouraged (Macer et al., 1997). In 2000, more respondents recognized the risks (49% of the public and 51% of the scientists) than in 1997 (38%). However, in 2000, significantly the level of agreement that there were benefits dropped by 14% (Table 1), and there was a 23% decrease in the proportion of those who thought it should be encouraged overall. This may be due to the increased perception of the risks and the decreased moral acceptability (Table 1).
Considering self-indicated attitudes, Japanese public were less likely to be willing to accept genetic diagnosis for reasons of moral acceptability (d) than they were at any earlier survey point since surveys were started in 1991 (Macer, 1992; 1994b). All in all, it was a split proportion of around 37% of public respondents both who agreed and those who disagreed on encouraging the technique (e). Removing the effects of "don't know", a comparison of their clear attitudes on self-indicated scales toward genetic diagnosis was made between the public and scientists. The results illustrate that there is no statistically significance on social acceptability (e) among the public and scientist respondents. Regarding the social encouragement of genetic testing, the public and scientists are likely to have a common attitude, as has been observed also in 1991 (Macer, 1992).
The trends of acceptance in genetic diagnosis among Japanese public are that more than half of the people were expressing at the same time both acceptance and the strongest type of ethical concerns (Table 6). When we see the proportion of the reasons in the series of the questions for the four applications, the respondents to this question on genetic testing gave more comments like "Ethical Concerns" rather than "Risk Concerns". Furthermore, the public gave more of those comments than the scientists. Rather as opposed to the currents seen in other three medical applications, significantly more of the scientists thought it was risky even in the question on usefulness (b) (ƒÔ2=5.26, df=1, p<0.05). Also genetic diagnosis was the only application that the scientists expressed more of "Unnatural feelings" in response to the question on risk (c) than the public (Tables 2-5). Considering this point, risk perception among the respondents tends to be significantly different (ƒÔ2=10.3, df=5, p<0.1). This inversion might explain why the attitudes of the scientists are similar to those of the public in the self-indicated scale on overall encouragement, which represents the social acceptability.
Comments included concerns about abortion or human selection, for example:
"To test at the stage of fetus is for reasons to abort."
"It justifies fetal selection."
"I feel there may be fetuses that have their lives taken."
"A possibility to encourage abortion unnecessarily."
"A fear of fetal selection with some advantages."
Also many people gave comments about eugenics or discrimination as well as abortion, for example:
"Life selection leads to exclude handicapped people who are today."
"There is a fear to lead to eugenics."
"It leads to deny that people who get genetic diseases should be given birth."
"It may expand gender or intelligence."
"A risk to grade lives."
Some respondents wondered whether genetic diagnosis works well, for example:
"Even though it can be found, there is no effective remedy. It will result in abortion."
"It is a question what they do after diseases are found."
Comments included concerns about the rights of the embryo or fetus, for example:
"Children to be born cannot make a choice."
"I agree if it is done at one's will, however, fetuses have no way to express their wills."
"Fetuses who get genetic diseases will be aborted, and deprived of their rights to be born."
A number of children in a family in an affluent society tend to be less than that of a family in the developing world. A comment given reflects this point:
"More people will desire the diagnosis as the number of children decreases."
In opinion surveys that have been conducted to examine the trust persons have in the government to regulate biotechnology the results have revealed a lack of trust. There are a variety of reasons for this distrust. One is the general distrust of government authorities due to government corruption in general, with a frequent series of allegations and court cases involving government officials accepting bribes or kickbacks from industry. Most are not specifically related to the agricultural or medical industries however there is a general distrust of government.
Table 7 summarizes the results of opinion surveys in 1993 and 2003 on how much people trust different sources of information about biotechnology in Japan, and shows decreased trust in every source in 2003 compared to 1993. Concerns about medicines in Japan have increased due to news coverage over the long process of lawsuits over contaminated blood products and over CJD-contaminated dura mater sold in Japan in 1996. The editorial of Nature in September 2001 (Editorial, 2001) pointed out issues about the management of Japanese government over regulations for products containing potentially infectious matters. These incidences might partly decrease the trust in both medicines and regulatory bodies since 1997. In the surveys respondents did not trust their own government, however, over half would rather trust the United Nations bodies like World Health Organization (Macer et al., 1997a; Ng et al. 2000).
The positions of the public and scientists became clearer by this analysis of the reasons for their opinions. To get consensus about biotechnological applications, for example, which areas need to be considered and discussed more precisely, we can look at the comments and trends in response. The results of the surveys suggest mixed attitudes towards biotechnology in Japan, which is a healthy sign for the maturity of the society in facing ethical issues of science and technology. Approaches for bioethical discussion can involve the public and these studies show that the public includes persons with a diversity of ideas.
The Japanese public supports the development of science and technology to make life better, as do the public in all societies. Compared to the 1997 survey (Macer et al., 1997), support of the public for these biotechnology applications dropped in all cases. This was because there were less perceived benefits and more perceived risks (Table 1). On the other hand, amongst the scientists, there is a high level of support for encouraging research using transgenic cancer mice and xenotransplantation, although there is lower support for genetic diagnosis. Internationally there continues to be more concerns in Europe over GM food than in the USA, and Japanese consumers are cautious like Europeans. The analysis of the reasons given for the perception of benefits and risks of specific applications of biotechnology, and the other questions asked in this survey will provide more in depth analysis of the way people process these moral dilemmas and be able to construct more of the human mental map.
Xenotransplantation and genetic diagnosis were less acceptable than the other applications, and there were more changes in responses to the five-point agreement scales since 1997 compared to the other two. They were perceived to be more problematic applications compared to the other two. In some cases, the attitudes and reasons of the public overlapped with those of the scientists. Thus, the scientists did not support them as strongly as they did for medicines made in GM microorganisms and research using the cancer mouse. Since so many scientific papers are published from studies using transgenic animals we could expect there to be a high level of support in terms of their scientific utility. However the most common reason was medical benefit, rather than research or pure science. It seems like most Japanese people are prepared to genetically engineer animals if they perceive a benefit (Bruce and Bruce, 1998).
The analysis of the reasoning presented here suggests that there are ethical concerns beyond human safety seen in the opinions of Japanese public and scientists (Table 5). Perhaps most distressing for public bioethics was the lack of trust by most persons in any domestic group in Japan. Over half the respondents to the 2003 survey said that they had no trust in government agencies (Table 7). 40% said they had no trust in medical doctors or university professors, increased from 30% in 1993. Concerns about medicines in Japan has increased due to news about the long process of lawsuits over contaminated blood products and over CJD-contaminated dura mater sold in Japan in 1996. The editorial of Nature in September 2001 (Editorial, 2001) pointed out issues about the management of Japanese government over regulations for products containing potentially infectious matters. These incidences might partly decrease the decreased trust in both medicines and regulatory bodies since 1997. In the surveys respondents did not trust their own government but rather over half would rather trust the United Nations bodies like World Health Organization (Macer et al., 1997; Ng et al. 2000). Government and industry that want public trust should be more closely aligned to the positions of UN organizations if they want people to believe them. The lack of trust is also a reason for increased concern about biotechnology in Europe (Eurobarometer 52.1, 55.2; Bonny, 2003). Television was the most frequently mentioned information source in the surveys.
For comparison, the results of a survey conducted in New Zealand in 1997 (Macer et al., 1997), and in 2001 (Tanaka, 2002) show that the respondents expressed the highest acceptability in both of benefits (93%) and social acceptability (79%) in genetic diagnosis, which is similar to GM medicines (90% and 79% respectively). Comparisons can also be made to trends in Europe (Gaskell, et al. 2000), and confirm that Japanese people are relatively positive towards biotechnology when compared to other countries (Macer, 1992; Hoban, 1997).
When the 1997 survey was conducted, more people were optimistic about modern biotechnology. A factor that affected the decrease of the public support in biotechnology was not so much the birth of Dolly, the cloned sheep in February 1997 (Macer and Ng, 2000), but rather the concern over the introduction and labeling of food made from genetically modified organisms. After these two events, suddenly the topics about biotechnology, especially genetic engineering, heated up not only in the media, but also in general public or religious groups with some negative concerns already about the way policy decisions are made in Japan only by scientists and not by the public. This might increase skeptical views of the people over biotechnology.
In the 1997 and 2000 survey, respondents were asked about another two applications of genetic engineering, modern biotechnology for making genetically modified plants for food and agriculture. As a result, a similar proportion of the public wanted to encourage (subquestion e) genetic diagnosis as they did for GM plants, and GM plants were less acceptable than GM medicines and the cancer mouse (Ng et al., 2000). This is opposite to the general trend in surveys to be more supportive of applications in plants rather than animals (Macer, 1994ab).
The Japanese public had more concerns about ethical problems of genetic diagnosis than the scientists. Many Japanese people are likely to have an image that manipulating and selecting life is something invading the natural course of pregnancy. The abortion rate of 13 per 1000 women of reproductive age is a little higher than West European countries, but lower than communist countries or East European countries (AGI, 1999). Various factors affect the abortion rate, such as economic aspects. It would be interesting to see how scientific knowledge can be adapted to thinking that gives some extrinsic values on early embryos. This issue is controversial in all societies, regardless of religion (Macer, 1994b). Regarding a new issue, there are implications of this idea on the use of surplus embryos for stem cell research as a result of genetic diagnosis. Although legally such research is supported, if the proportion of the people who feel "sorry" for dumping unselected embryos grows, they may reject utilizing them for the use. The further association between stem cell research and Japanese views needs to be investigated.
The most noticeable sign for bioethical maturity in this analysis is reflected in the category of balanced view (Macer, 1994a; 1998). A good or a morally good decision may differ between people and time, though it is believed widely that, a more satisfied decision is made after considering variety of views and ideas. Still, it is debatable whether real maturity can be measured by statistics, or even whether bioethics education itself is effective on the minds of the receivers. When it comes to practical application of knowledge, people often find it difficult to reflect their previous logic. Ideas and concerns change and develop over time, which can be a process of bioethical maturity (Maekawa and Macer, 2001). By informing people about facts and ideas over different bioethical issues, they may be more prepared, or more aware of it. It is important to investigate its effects and reflect its results in the actual teaching grounds.
We thank Mr. Tomoyuki Watanabe for help with the survey in 2000, and Eiko Suda, Yoshihiro Okada, Masayuki Takahashi, Mariko Onodera, Fumika Hiwa, Fumi Maekawa and Makina Kato in the 2003 survey, and all the respondents who answered the surveys. The 2003 survey costs were paid for by a grant from the Japan BioIndustry Association, under funding form the Ministry for International Trade and Industry of Japan.
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