Editors: Norio Fujiki, M.D. & Darryl R.J. Macer, Ph.D.
Foreign Professor, Institute of Biological Sciences, University of Tsukuba, JAPAN
In order to look at the situation in Japan, a country belonging to the first group of countries, a series of questionnaires was sent to academics, high school biology teachers, and the general public, examining attitudes to genetic engineering, genetic screening and therapy, and the regulation of biotechnology. The relevant results of this mid-late 1991 survey will be discussed, with the implications for the future decision-making processes, and the future of applications of medical genetics.
These results were compared to the results of other opinion surveys conducted by other researchers, in particular a 1990 opinion survey in New Zealand which also looked at the opinions of scientists, teachers and the general public and the results of the US Office of Technology Assessment (late 1986) public perceptions survey. New Zealand and the USA are examples of countries which belong to the second group of countries, as defined above. The comparative results will be discussed in terms of the association between international public opinion and the responsibility of scientists, and how this affects the decision-making process.
Another point of this paper will be to examine the ethical concerns expressed by these different groups in response to questions on the perceived benefits and risks, of genetic manipulation, and the questions on specific applications in medical genetics. The questionnaire included questions on personal and national use of genetic testing, and personal and family use of gene therapy. The majority of all groups supported the use of such techniques, the results will be presented.
Whenever we use statistics we need to remember how much we can trust statistics. In English we say "Lies, Damn Lies, and Statistics". Nethertheless, they can still provide us some insight into the way people think. The full details of the surveys has been reported in the book describing the results (Macer 1992). Questions were chosen not to be leading, and the relevant questions are shown with the results. The questionnaires were written on three double-sided sheets of A4 paper stapled together, with the introductory note on the first page of the questionnaire. They were sent with an enclosed stamped and addressed return envelope for return to a P.O. Box number. University of Tsukuba envelopes were used for the mailing. The surveys were nationwide randomly distributed.
The sample sizes and characteristics of the samples that I will discussing are in Table 1. The two other surveys for comparison were conducted in USA (OTA 1987) and in New Zealand (Couchman & Fink-Jensen 1990). All three surveys were nationwide in coverage and based on random samples of the groups that are indicated. The approach in Japan used mail response questionnaires. Although they have an apparent disadvantage of a lower response rate than interviews generally, in this survey the response rates (and responses) were found to be similar in the public from interviews and mail response. The Japanese survey desired respondents to write comments down, and this would not have been possible using interviews. The comments that people write down are more accurate and lengthy than comments that interviewers transcribe, so mail response actually has this advantage.
Japan August-October 1991 (Macer, 1992) Sample: Public Students High Academics
School Biology Teacher Total Univ. of Tsukuba Staff Outside Univ. of Tsukuba Total Scientist Number 551 204 228 728 249 479 555 Male 53 53 90 89 78 95 90 Female 47 47 10 11 22 5 9 Response 26%, +
Interview 60% 46% 48% 37% 56% -
New Zealand May 1990
Couchman & Fink-Jensen (1990) USA Nov. 1986
OTA (1987) Sample: Public High School Biology Teacher Total Scientist
Public Number 2034 277 258 1273 Male 49.7 64 87 50 Female 50.3 36 13 50 Response Interview 64% 58% Interview
Although the principal purpose of the survey was to investigate opinions about genetic engineering, in Q5 some other controversial and non-controversial developments were listed and the results for each can be compared. The public awareness of, and attitudes to, specific developments of science and technology was examined using the same question as used by Couchman & Fink-Jensen (1990) in New Zealand. People were first asked about their awareness of the techniques (Q5a), whether they had not heard of it, they had heard of it but knew little about it, or whether they could explain it to a friend. The next question (Q5b) asked them whether they thought each development would have a benefit for Japan or not. Q5c and Q5d examined their perceptions about the risks of technology by asking them how worried they were about each development. Q5b and Q5c were:
For each of these developments that you have heard of;
Q5b. Do you personally believe (DEVELOPMENT) would be a worthwhile area for scientific research in Japan?
1 Yes 2 No 3 Don't know
Q5c. In the area of (DEVELOPMENT) do you have any worries about the impact of research or its applications?
1 Yes 2 No 3 Don't know
In areas of the application of science and technology that are associated with benefits and risks, it may be more useful in opinion surveys to ask questions about the benefits and the risks, as done in Q5, as well as approval of the techniques in general, and for specific applications. The relative benefits and harms expressed by respondents to Q5 are represented in Figure 1. Basically all the developments are considered to be of benefit by the majority of respondents. There are some differences in the position of the eight science developments on the scattergrams. Pesticides stays at a similar position, of high benefit and high concern, and silicon chips, fibre optics and superconductors stay at positions of low concern and high benefit. IVF shifts considerably, being more favourably considered in New Zealand than in Japan. Biological pest control is associated with more concern in New Zealand, even though it is considered the most worthwhile development. Biotechnology has a higher level of concern in Japan, even though more people think it is worthwhile compared to New Zealand. Genetic engineering stays at the position of high concern in both samples.
The results are based on the number of respondents who said that they had heard of each development, and are presented as scattergrams, with the number of respondents who thought each development was worthwhile for their country versus the number of respondents who were worried about the impact of the developments. Results from New Zealand are from the survey of Couchman & Fink-Jensen (1990).
More specific questions than those asked in Q5, were used in Q7. Rather than testing concerns about the techniques included by the broad term "genetic engineering", the views of genetic manipulation on four types of organisms were examined: humans, animals, plants and microbes. The questions used by Couchman & Fink-Jensen (1990) were used, with room for free response to list reasons for acceptance, benefits and risks perceived. The questions were:
Please answer the questions below:
Q7b. Which, if any, of those biological methods you've heard of are acceptable to you for any reason?
Manipulating genetic material in human cells
Manipulating genetic material in microbes
Manipulating genetic material in plants
Manipulating genetic material in animals
2 Unacceptable (If unacceptable write why each one is not acceptable to you)
Q7c. Which of those biological methods, if any, of those you've heard of could provide benefits for Japan?
1 No benefit
2 Benefit (If a benefit, what benefits do you believe each one could produce?)
Q7d. Which, if any, of those biological methods could present serious risks or hazards in Japan?
1 Risk 2 No risk (If a risk, what serious risks or hazards do you believe each one could present in Japan?)
To be aware of genetic manipulation is a different thing from accepting genetic manipulation, the same as is true of any scientific development. In the responses to Q7b we see clear differentiation by all groups of the acceptability of genetic manipulation depending on the organism, see Figure 2. There is clear support for genetic manipulation of plants and microbes from all groups. There is less support for genetic manipulation of animals, but still a majority of all groups thinks that it is acceptable. However, the public thought that genetic manipulation of human cells (which will often be interpreted to mean human beings), is unacceptable. Other groups were more equally split on this question, though only scientists had a majority in favour of it.
In both Japan and New Zealand genetic manipulation of plants is the most acceptable type. Followed by genetic manipulation of microbes, animals and humans, in order of decreasing acceptability. This preference order is the same as that obtained in the USA in 1986 (OTA 1987), but their question asked interviewees to rank their acceptability on a ten point scale, 1-10, so we cannot compare the acceptability ranks. It is also very likely that the acceptability values have shifted since 1986 in the USA.
The reasons for unacceptability were asked, and these are perhaps the most interesting result (Macer 1992). For different organisms they were different, as in New Zealand. The method used to analyse the reasoning was to assign the comments to categories. A total of 38 different categories were used in the computer data analysis. For each distinct reason given in the comment, a count of 1 was scored in one of the categories of the data sheet in the computer. The most reasons given for a single comment was 3, but generally there were only 1 or 2 reasons. Also, about 25% did not write any comment. More university students and high school biology teachers wrote comments than did scientists, academics and the public. Interestingly, more public wrote comments than scientists.
There was a reasonable diversity of replies. For genetic manipulation of human cells the most common responses were that it is unethical, there is the danger of human misuse, eugenics and insufficient controls and the reasons such as it is unnatural, it is playing God, or the fear of the unknown. In the reason "fear of unknown", most respondents were concerned that there may be unknown results, rather than it being an unknown "area" of research.
There was a comparatively low level of concern expressed about ethical problems when using animals in Japan. There were also significant proportions of respondents who thought that genetic manipulation was interfering with nature, or that it was profanity to God. These respondents may see these techniques as unacceptable, regardless of the state of technology and regulation. Although many scientists react to people with these views as irrational, it is noteworthy that about 16% of the scientists and teachers in New Zealand and Japan who found these techniques unacceptable also shared these views (Macer 1992).
The results of Q7c, which asked people whether they thought there were benefits of genetic manipulation. Both plants and microbes were perceived to give the most benefit, with genetic manipulation of animals significantly lower. However, still more than 70% of teachers and scientists saw a benefit from genetic manipulation of animals. There were less benefits perceived from human genetic manipulation. Teachers and scientists saw more benefit from these techniques than the public or students. More New Zealanders believed that there would be benefits from genetic manipulation, especially for animals and plants, and the comparative results are represented in Figure 3.
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 the largest benefit that they saw coming from biotechnology, between one of four possible benefits from biotechnology. Over half rated cures for serious diseases as the most important benefit. The respondents were asked a similar question about their largest concern. 40% of French, 35% of Germans, and 25% of British and Italian respondents chose eugenics, and slightly lower proportions overall chose environmental harm, 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 feel that biotechnology is ethical and one third feel that it is unethical, and one third think it is in between, "neither". Therefore, 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. Other benefits are divided, depending on the organisms that are considered. Microorganisms are seen for both medical use and use to produce useful substances in general through fermentation. 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.
New Zealand data from the survey of Couchman & Fink-Jensen (1990).
Figure 3 Comparative perceptions of the benefits and risks of genetic manipulation in Japan and New Zealand
Data from New Zealand from the survey of Couchman & Fink-Jensen (1990).
People were asked to express the risks that they perceived, and these are summarised in Figure 4. The method used to assign the cited reasons, was the same as for the reasons given for benefits, and unacceptability. The key feature of these questions is that they were free response. To use any other sort of question to look at the reasoning can be very misleading. The free response means that people's own thoughts can be examined, yet this style of question is seldom seen. Although it is much work, any other approach can give misleading results or what we could call tricks of statistics.
There was wide diversity of responses, as found with the other questions. The frequency of the common responses did not differ greatly from those given to Q7b, though many respondents listed different reasons in response to these two questions. The risks were in general more involving human misuse, and activity, rather than "interfering with nature". They were also more specific, so that more respondents listed deformities and mutations as a problem.
The question of genetic screening and genetic therapy were addressed by a series of questions, Q9-14, which were modified from those used in the USA (OTA 1987). These questions are written in Table 2, together with the results.
Q9 asked about prenatal genetic screening, including a question whether people thought it should be available under national health insurance, and also Q9b asked whether people would personally use prenatal genetic screening (Table 2). 77% of the public answered that prenatal genetic screening should be available under national health insurance, and only 7% said that it should not be. 16% said that they were not sure. The students gave a similar result. The results from the scientists and high school biology teachers were similar, with slightly less support (71-73%), partly because of more uncertainty (19-21%).
There was greater doubt over the personal use of such testing, with 57% of the public saying that they would personally use such tests, and 17% said that they would not, with 27% undecided. Teachers and scientists were somewhat keener to personally use such tests, with 60% saying yes and 15-17% saying that they would not. The personal acceptance of prenatal genetic screening (Q9b) appears to be lower in Japan than it is in the USA (Figure 5), though there are less people who state that they would not use such tests, if we compare these results with those of question 32 of the OTA (1987) survey in the USA, in which 69% said that they would use the test but 27% said that they wouldn't. In the USA only 4% said that they are not sure, but in Japan 26% said they were not sure. A recent US public telephone survey (N=1006, February 1990, Singer 1991) found that 66% of respondents want to personally use prenatal genetic screening and 16% do not.
There is clear support for prenatal genetic screening, and that it also should be available under national health insurance in Japan. We need to avoid abuses of such screening, for non-disease conditions, such as sex selection, and for eugenic purposes, by some regulations. An extra insurance against abuse is to improve social support services for handicapped people in Japan, and to continue to educate people away from discrimination that is based on any apparent difference. Such education measures can change social attitudes towards "handicapped" as shown by studies in Canada between 1975 and 1988 (Rees et al. 1991). Most Japanese receive medical insurance from the government, and extending the coverage of national health insurance to include genetic testing would ensure all people have free and open access to such services. There is a lack of information about the availability of prenatal diagnosis outside of large cities, and there must also be concerns about the practice of genetic counselling after the results of surveys of genetic counselors in Japan (Ohkura & Kimura 1989, Shirai 1992). It may also allow the establishment of some national statistics on genetic services to ensure that the quality of services could be monitored.
Table 2: Attitudes to genetic screening
Many genetic diseases may be able to be treated by correcting the defective genes, by gene therapy. Gene therapy is "a therapeutic technique in which a functioning gene is inserted into the somatic cells of a patient to correct an inborn genetic error or to provide a new function to the cell" (Anderson 1992). There are a number of human gene therapy trials currently underway, for several different diseases including several cancers (Culliton 1991, Gutierrez et al. 1992). At the time of writing there have been 16 human gene transfer or therapy trials approved by the Recombinant DNA Advisory Committee (RAC) in the USA, and trials approved in Lyon, France and Shanghai, China. It is still an experimental therapy, but if it is safe and effective, it may prove to be a better approach to therapy than many current therapies, because gene therapy cures the cause of the disease rather than merely treating the symptoms of a disease. Also, many diseases are still incurable by other means.
Currently such gene therapy is not inheritable, we need to have much wider discussion about the ethics and social impact before we start inheritable gene therapy (Macer 1990). However, non inheritable gene therapy to treat patients involves similar issues to any other therapy, and if it is safer and more effective, it should be available to patient's who consent to it. There are many approaches being developed (Bluestone 1992) and we can expect rapid introduction of these techniques, because of more than 20 years of preparatory experiments on animals, and the success of some of the current clinical trials.
The results of questions on public acceptance of gene therapy are presented in Table 3. Q13 asked whether people would personally undergo gene therapy to correct a serious or fatal genetic disease later in life, and it used a four point acceptance scale, and a "don't know" answer. 54% of the public sample were either very or somewhat willing, and 29% were somewhat or very unwilling, with 16% undecided. Q14 asked people whether they would be willing for their child to undergo genetic therapy, and there was higher acceptance, with 66% willing and 18% unwilling, with 16% undecided. Teachers were more accepting, with 65% willing and 22% unwilling, and 13% undecided, about gene therapy on themselves, and 73% willing and 14% unwilling to allow gene therapy on their children. Scientists were slightly more willing to use gene therapy on themselves than the public in general, but gave similar responses for gene therapy on their children. Students were somewhat less willing to use gene therapy, but similar in total agreement to the use of gene therapy to the public.
There is less willingness to use gene therapy in Japan than in the USA, though as in the cases involving genetic screening, there is a high proportion of undecided respondents in Japan (in the USA only 2-3% of the people were undecided (OTA 1987)). Like the US survey, there was greater acceptance of using gene therapy in children than personal use, see Figure 6.
In the two Prime Minister's Office surveys of public opinion in Japan, described above (PMO 1986, 1991) people were asked whether they thought it was good for humans to use gene therapy to cure genetic disease. In Dec. 1985 45.7% said yes, 29.5% said no, and 24.9% didn't know. In Oct. 1990 52.3% said yes, 23.9% said no, and 23.8% didn't know.
.c4. The responses expressed in this survey obviously also depend on the circumstances that people have experienced. The conclusion is that there is support for gene therapy to treat disease in Japan, and only about one fifth of the population are against it, and this proportion may be decreasing since 1985. 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 than in the general case, or for personal use, which was the situation examined in the public opinion surveys by the Prime Minister's Office.
Figure 6 Comparative attitudes to gene therapy in Japan and the USA (Q13, Q14)
In 1991 a controversy arose when a single patent application for 337 human genes was made in the USA. This has raised questions about patenting policy. In February 1992 an application for patents on another 2375 genes was made by the same people. Modern technology has the ability to sequence all of the 100,000 human genes within several years. Further applications for several thousand human genes will follow. However, there is no demonstrated utility so this type of broad application is expected to fail, regardless of ethical or policy issues. The patents were applied for on behalf of the US National Institutes of Health, though many inside the NIH are against it (Roberts 1992). This government body may sublicence particular US companies to pursue research on these genes in an attempt to "protect" the US biotechnology industry from international competition. However, researchers in Britain, France and Japan are also obtaining many gene sequences (including some of the same genes and sequences), so a patent war may begin, and international scientific cooperation in the human genome project will be seriously damaged. It could take years before courts decide on the validity of such patents, so more applications are expected just in case a patent office recognises such applications. Actually, the publication of such sequence markers will make it more difficult for companies to patent those genes and could discourage research. Governments are debating what policy should be made. The French government, and Japanese genome researchers, have announced that they will not apply for similar patents because of ethical reasons. England's Medical Research Council (MRC) has applied for a similar patent on more than 1000 genes, though England is joining France in calling for an international agreement to waive any of these patents if they should be granted. The human genome is common property of all human beings, and no one should be able to patent it (Macer 1991). Public opinion could force a policy change regarding the patenting of genetic material, even if it is judged to be legally valid. The policy should be made considering all the economic, environmental, ethical and social implications, and it should be international.
An effort to examine this question of patenting life was made using a question that was modified from one used in New Zealand (Couchman & Fink-Jensen 1990). The patenting of genetic material derived from humans was added to the other questions, as shown below:
Q17b. In your opinion, for which of the following should people be able to obtain patents and copyright? 1 Approve 2 Disapprove 3 Don't know
New Inventions, such as consumer products
Books and other information
New plant varieties
New animal breeds
Genetic material extracted from plants and animals
Genetic material extracted from humans
People were asked if they agreed whether patents should be obtainable for different subject matter. 90-94% of all groups agreed with the patenting of inventions in general, such as consumer products. There was less consensus on the patenting of other items, though the same relative order of items was followed in all groups in Japan and New Zealand. The proportion of respondents who disagreed with the patenting of all items was greater in New Zealand, because many Japanese respondents chose the "don't know" response.
There was less acceptance of patenting new plant or animal varieties than of inventions in general. Only 51% of the public agreed with patenting of "genetic material extracted from plants and animals" in New Zealand, but even less, 38%, in Japan. There was even lower acceptance of patenting "genetic material extracted from humans", in Japan only 29% of the public agreed, while 34% disagreed. In all groups more people disagreed with the patenting of genetic material extracted from humans than those who agreed with it. The comparative results in Japan and New Zealand are presented in Figure 7.
The responses of the different sample populations to the questions in this survey, give us views of parts of the complete picture. There are clearly some questions in which there was surprising little difference in response detected, such as the questions on the use of medical genetics. There are also other questions where there are significant differences in response. In addition to the comparisons that have been made throughout this paper between the responses to the general questions, some of the questions were directly associated with the relationship between scientists and the public. A series of specific statements was used (Q16), largely using those of Couchman & Fink-Jensen (1990) used in New Zealand.
Q16b asked whether people would believe a statement made by a scientists working in a government department about product safety. 35% of the public said that they would agree with such a statement, and 21% said that they would not, and 44% said that they would not be sure. Q16c asked about the credibility of company statements about product safety, and there was less trust of such statements, with 17% of the public saying that they would believe such statements and a greater proportion, 36% saying that they would not believe it, and half, 46% said that they would neither agree or disagree.
The public belief in product safety statements made by both companies and government scientists in Japan is lower than the public in New Zealand (Couchman & Fink-Jensen 1990). While both in New Zealand and Japan 35-36% of the public agreed with safety statements made by government scientists, and 20-21% disagreed with them (Figure 8). In Japan 17% agreed with company statements versus 26% in New Zealand, while in both countries 34-6% said that they would disagree with company statements. It appears that the public in both countries would question safety statements, especially those made by companies. In the USA, people were asked whether they would believe statements made about the risks of products by different groups (OTA 1987), and companies were less trusted than government agencies, with university scientists being the most trusted. Only 6% said that they would definitely believe a statement made by a company about its product, and 15% said they would not believe, with 37% inclined not to believe and 39% inclined to believe. The question was different, but it appears that the public in the USA may be more trusting of companies than the public in Japan and in New Zealand. This would be an interesting point to confirm, because often people observe that Japanese are less outspoken than Westerners, and draw the conclusion that they are less critical of authorities. These results, together with other experience, suggests that underneath they share at least as much distrust of authority as in the West, it is only that they do not openly express it.
Q16d asked whether the activities of scientists in Japan should be more closely regulated to protect public safety. 51% of the public agreed with this statement, and 49% of teachers, 43% of University staff, whereas only 31% of the scientists and students agreed. 42% of the scientists, 28% of university students, 20% of the University staff,18% of the teachers and 17% of the public disagreed with this statement. This suggests that people do see some hazards from the activities of scientists and they think they should be regulated more closely. The scientists are against regulation of their activities, though still one third support it. The scientists in New Zealand were also against further regulation of their activity, with 42% opposed and 23% supporting more regulation, while the public expressed even greater support for regulation of scientist's activities, 67% agreeing with 11% opposed (Figure 8). This could be due to a more outspoken public in New Zealand than in Japan, rather than due to any particular local scientific accidents, but as seen in the responses to Q16b and Q16c, the Japanese public questioned safety statements that scientists made more than the New Zealand public. It may be due to the Japanese distrust of regulatory systems themselves, in addition to the scientists. This would also be interesting to investigate.
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. Scientists perceived more benefits from genetic manipulation of all organisms than the public. 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, and their perceived benefits and risks (Figure 4) from genetic manipulation, and their concerns about consuming foodstuffs made from GMOs.
There is strong support for the availability of general genetic screening tests for serious diseases under national health insurance in Japan. There is strong support for the availability of prenatal genetic screening tests under national health insurance in Japan (Table 2). A majority of people said that they would personally use prenatal genetic screening tests for serious diseases, or presymptomatic genetic screening tests for fatal diseases. There is less opposition to the use of genetic screening in Japan than in the USA (Figure 5).
A majority of Japanese people would personally undergo gene therapy for serious diseases, and there was even more support for having their children undergo gene therapy (Table 3).
There is public rejection of the patenting of genetic material from humans, and there are also many who reject patenting of genetic material from plants and animals. There are also many people who oppose patenting of new plant and animal varieties (Figure 7). The area of biotechnology patent policy is contentious, and public opinion should be examined and this should influence patent policy.
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. There appears 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. There is significantly less concern about animal rights issues and the ethical issues of animal genetic manipulation in Japan than in New Zealand.
There was also a strong consensus for the inclusion of discussion of the ethical, social and environmental issues associated with genetic engineering in school and University curriculum. Such discussion should include a discussion of the alternative technologies and approaches. There appears to be significantly less discussion of the social, ethical and environmental issues associated with genetic engineering in Japanese high schools than there is in New Zealand (Macer 1992).
The results of these comparisons challenge some commonly held perceptions about the understanding and attitudes about medical genetics held by different groups of both the national and international communities. Scientists have several responsibilities as human beings with specialised knowledge. These include ensuring the effective and ethical delivery of useful applications to the public, who support their research activity. In the light of the positive support for genetic screening and genetic therapy in Japan and the USA, there should be more access to these techniques. However, the decision-making concerning technology should be made in public, and due attention should be given to the ethical issues. These results indicate that the public is at least as well prepared to enter this debate as academics are, therefore academics should no longer attempt to claim that superior technical knowledge gives them a right to exclude the public and non-experts from debates concerning applications of science and technology. It also means that the public should make the effort to be involved in decision-making processes at individual and community levels.
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