Authors:
Darryl R. J. Macer, Institute of Biological Sciences, University of Tsukuba, Ibaraki 305, JAPAN; Eubios Ethics Institute, 31 Colwyn Street, Christchurch 5, New Zealand
Shiro Akiyama, Institute of Biological Sciences, University of Tsukuba, Ibaraki 305, JAPAN
Angeles Tan Alora, Southeast Asian Center for Bioethics, University of Santo Tomas, Espana, Manila, Philippines
Yukiko Asada, Institute of Biological Sciences, University of Tsukuba, Ibaraki 305, JAPAN
Jayapaul Azariah, Department of Zoology, University of Madras - Guindy Campus, Madras 600 025, INDIA
Hilda Azariah, Center for Advanced Study in Botany, University of Madras - Guindy Campus, Madras 600 025, INDIA
Maureen V. Boost, Department of Health Sciences, Hong Kong Polytechnic, Hung Hom, Kowloon, HONG KONG
Prasert Chatwachirawong, Faculty of Agriculture, Kasetsart University, Kamphaeng Saen, Nakhon Pathom 73140, THAILAND
Yuko Kato, Institute of Biological Sciences, University of Tsukuba, Ibaraki 305, JAPAN
Vijay Kaushik, Institute of Philosophy, Russian Academy of Sciences, Moscow, RUSSIA
FrankJ. Leavitt, Jakobovits Center for Jewish Medical Ethics, Faculty of Health Sciences, Ben Gurion University of the Negev, 84105 Beer Sheva, ISRAEL.
Nobuko Y. Macer, Eubios Ethics Institute, 31 Colwyn Street, Christchurch 5, New Zealand
Chin Choon Ong, Department of Chemical Process and Biotechnology, Singapore Polytechnic, 500 Dover Rd, SINGAPORE 0513
Peerasak Srinives, Faculty of Agriculture, Kasetsart University, Kamphaeng Saen, Nakhon Pathom 73140, THAILAND
Miho Tsuzuki,
Institute of Biological Sciences, University of Tsukuba, Ibaraki 305, JAPAN
Gene therapy is in clinical trials in a number of countries, raising the question of whether different ethical standards can be justified in different countries. One key issue is how divergent are the perceptions and bioethical reasoning of peoples around the world.
An International Bioethics Survey with 150 questions including 35 open ones was developed to look at how people think about diseases, life, nature, and selected issues of science and technology, biotechnology, genetic engineering, genetic screening, and gene therapy. The mail response survey was conducted in 1993 among the public in Australia, India, Israel, Japan, New Zealand, Russia, and Thailand, and the same written survey was conducted among university students in Australia, Hong Kong, India, Japan, New Zealand, The Philippines, Russia, Singapore and Thailand. Similar questions were included in an international high school education bioethics survey among high school teachers in Australia, Japan and New Zealand. Further international comparisons to the USA and Europe are made.
About three quarters of all samples supported personal use of gene therapy, with higher support for children's use of gene therapy. The diversity of views was generally similar within each country. The major reasons given were to save life and increase the quality of life. About 5-7% rejected gene therapy considering it to be playing God, or unnatural. There was very little concern about eugenics (0.5-2%), and more respondents gave supportive reasons like "improving genes", especially in Thailand and India. Support for specific applications was significantly less for "improving physical characters", "improving intelligence" or "making people more ethical" than for curing diseases like cancer or diabetes, but there was little difference between inheritable or non-inheritable gene therapy.
The application of human genetics raises ethical issues, and some of these issues have been a major stimulus for bioethics and medical sociology. The ethics of gene therapy has been debated for many years and this debate is also closely linked to public and political opinion (Carmen, 1993). There have been several surveys published concerning public acceptance of gene therapy (OTA, 1987; Macer, 1992a, 1992b; March of Dimes, 1992). There have been many surveys in a range of countries published on attitudes to biotechnology and genetic engineering in general (Eurobarometer, 1993; Macer, 1994a, 1994b; Zechendorf, 1994). However, opinion surveys are prone to bias and numbers may be misused only to provide a scientific aura to reinforce pre-existing views. We need to develop approaches to examine the reasoning that people have, which may allow us to better predict the social impact of genetics. Therefore in this survey some open questions were used to explore the reasoning that different people used (Macer, 1994b).
The widening international use of gene therapy also makes us ask whether regulations should be national and or international, and whether different standards can be justified in different countries. The call for international approaches (including education and guidelines) is based on several arguments, including shared biological heritage and destiny of human beings in all "nations", and the transitory nature of "nations" and the precedents for international law to protect common interests of humanity (Macer, 1994c). There are currently efforts to make international guidelines for gene therapy, particularly by UNESCO (Butler, 1994). Those calling for national guidelines argue that each culture should make its own standards because of national autonomy (Bonnicksen, 1994), and because people in each country have different attitudes. Perhaps the key balancing issue is how divergent the perceptions and bioethical reasoning of peoples around the world are.
It has become standard in ethical debates about gene therapy to divide it into somatic cell gene therapy and enhancement, and germ-line gene therapy and enhancement (Anderson and Fletcher, 1980; Anderson, 1989; Walters, 1991). In the US NIH and FDA guidelines, the only class that is generally approved is somatic cell gene therapy to treat a disease or somatic cell gene transfer as a marker involved in development of medical therapy (Kessler et al., 1993). This is also true of all European (Mauron and Thevoz, 1991), Australian, Japanese (Macer, 1994c), and Canadian (Canada, 1993) guidelines and reports. We also see this reflected in the 1994 Council of Europe Draft Bioethics Convention (Nelki, 1994), which bans germ-line interventions, but notes that possible future exceptions could be permitted. There have been concerns that scenarios of germ-line gene enhancement may ignite public opposition to somatic cell gene therapy, and therefore a distinction has been maintained (Anderson, 1992). However, there are still frequent calls for its discussion (Fletcher and Anderson, 1992; Wivel and Walters, 1993).
Such distinctions are also being discussed in the formulation of international law in UNESCO. The UNESCO International Bioethics Committee is drafting general guidelines and an international declaration on the human genome and human genetics, that it is hoped will be approved by the United Nations General Assembly in 1998, the 50th anniversary of the Declaration of Human Rights (Butler, 1994). As one of the members of this committee, I would summarise the positions adopted in the 1994 report on gene therapy as:
1) encouragement of somatic cell gene therapy for any disease, not only genetic disease,
2) not making somatic cell gene enhancement or germ-line gene therapy illegal,
3) outlawing germ-line gene enhancement.
It is therefore interesting to look at how public opinion relates to the academic discussion of the ethics of gene therapy, given that public opinion will be an important factor in deciding what sort of applications of gene therapy that companies and researchers can implement.
This paper describes a survey method that may be used to provide data to explore people's reasoning about gene therapy, and data on perceptions of gene therapy in Australasia and Asia as a reference point for further international comparisons. Respondents made very interesting comments, and some are given. The diversity of comments was generally found to be the same in different countries, suggesting that reasoning about these issues goes deeper than cultures, or religions; which in itself is interesting from a sociobiological viewpoint, and also supports international approaches to regulation. This paper also reports relevant results from a high school bioethics education survey conducted in Australia, Japan and New Zealand.
International Bioethics Survey
Questionnaires including 150 questions in total, with 35 open-ended questions, were developed to look at how people think about diseases, life, nature, and selected issues of science and technology, biotechnology, genetic engineering, genetic screening, and gene therapy (Macer, 1994b). The questions about gene therapy were based on surveys conducted in the USA in 1986 (OTA, 1987) and 1992 (March of Dimes, 1992), and 1991 in Japan (Macer, 1992a, 1992b, 1994a). The two open questions (Q26, Q27) are below:
The simple open question, "why?", should not lead respondents into set responses, and was added to look at people's reasoning. The ideas in each comment were assigned to different categories, which were compared.
Another question directly concerning gene therapy was Q28 (See Table 3), which used specific cases and fixed response options and compares approval of therapy for different cases. There was also a question "Can you tell me how much you have heard or read about each of these subjects?", with a list of eight topics including "human gene therapy", and the responses, "Not heard of", "Heard of", or "Could explain it to a friend" (Table 1). Respondents who gave the third response could be generally assumed to know something about gene therapy, however, there was no question asking the respondents to explain what they thought gene therapy meant.
The survey was performed in 1993 in ten countries of the world, in English in Australia (A), Hong Kong (HK), India (IN), Israel (IS), New Zealand (NZ), The Philippines (P) and Singapore (S); in Japanese in Japan (J); in Russian in Russia (R); and in Thai in Thailand (T). Translations were checked by professional translators and questions were pretested (Macer, 1994b). Three population samples were chosen for these International Bioethics Surveys: the general public, university students and high school teachers. The questionnaires consisted of 6 A4 size pages with a 1 page introductory letter including a form for the public and teachers to request a summary of the survey results. The public and student questionnaires were identical. The teacher's survey included some of the same questions, but half of the questions were about teaching and curriculum in bioethics and genetics (Macer, 1994). The surveys to public and teachers were sent within each country with stamped return envelopes, and people were asked to respond. The responses rates and sampling dates are in Table 1.
Questionnaires were distributed randomly nationwide by hand to the public in Australia, India, Japan, New Zealand, and Thailand. The samples were chosen by a clustered random sampling method, involving selection of a representative cross-section of the community on maps combining both rural and urban areas chosen by randomly choosing names from all possibilities within the chosen provinces. Inside those localised areas every second house on both sides of every second street had a questionnaire delivered into the letterbox. Personal contact was avoided to attempt to standardise response, even if this may have adversely affected response rates. In each cluster of sampling no more than 50 questionnaires were delivered, and generally around 30 questionnaires per area. More than 80% of the questionnaires in Australia, Japan and New Zealand were delivered by D.M. and N.M., to help standardisation.
In India and Thailand some members of universities and institutes were also asked to deliver questionnaires, and although the clustered sampling method was used, this explains the higher representation of more educated persons in the samples than the general population. The survey in India and Israel was also restricted to areas where it could reasonably be expected to find English speaking persons, as the questionnaire was written in English. The sample size from Israel is not sufficient nor random, and this sample is only included as a preliminary observation. The survey in India is large but is not representative of the whole country, rather only of those who can speak English, and of the southern regions of India where most of the sampling was made.
The surveys in Israel and Russia included half public and half academics (including philosophers, molecular biologists, general humanities and science, and medical graduates), and included random delivery to institute members and to households, in the manner described above. The Russian sample included 56% from Moscow, 22% from Ufa, and 22% from Peterozavodsk, and does not therefore represent the rural section of the population of Russia.
Some sample characteristics are shown in Table 1 (Macer, 1994b). The public samples from New Zealand (N=329), Australia (N=201) and Japan (N=352) were representative of the general population, while the samples from India (N=568), Israel (N=50), Russia (N=446) and Thailand (N=680) had higher education than the general population, and this must be considered in discussion of the results. In India and Israel surveys were conducted in English, which is not spoken by the whole population, introducing a selection bias for higher education level.
Student samples were obtained with the kind assistance of the persons indicated below. The surveys were distributed by staff of the universities, and returned to a following class or departmental mail box. The samples include: medical schools in Australia (Peter Singer, Monash University, N=110), Japan (Michio Hirayama and Norio Fujiki, Fukui Medical School, N=127; Hideo Hayashi, University of Tsukuba, N=308), New Zealand (D. Gareth Jones, Otago University, N=96), the Philippines (Angeles T. Alora, University of San Tomas, N=164); a medical laboratory course in Hong Kong (Maureen Boost, Hong Kong Polytechnic, N=105); and biology students in India (Jayapaul Azariah and Hilda Azariah, University of Madras, N=325), Singapore (Lim Tit Meng, University of Singapore, N=23; Ong Chin Choon, Singapore Polytech, N=227) and Thailand (Peerasak Srivines and Prasert Chatwachirawong, Kasetsart University, N=232).
The high school teacher surveys were national, using randomly selected schools from published school lists. All 438 high schools in New Zealand were surveyed. Two copies of the questionnaire, with two stamped return envelopes, were sent along with a covering letter to the principal requesting that they randomly give one each to a biology and a social studies teacher. The samples of respondents included more biology teachers than social studies teachers; Japan (N=560 biology; N=383 social), New Zealand (N=206 biology; N=96 social) and Australia (N=251 biology; N=114 social); and these are treated separately.
General information gathered in the surveys included sex, age, marital status, children, education, religion, importance of religion, race, income and rural/urban locality (Table 1). Results of the other questions, further background, and more examples of open comments have been published (Macer, 1994b). In this paper the word "significant" implies a statistical significance of P<0.05.
Table 1:
Sample Characteristics
| %'s of total respondents | ||||||||||||||||||||||
| NZ | A | J | J91 | India | Thai | R | Israel | NZ | A | J | India | Thai | P | S | HK | NZb | NZs | Ab | As | Jb | Js | |
| N (returned questionnaires) | 329 | 201 | 352 | 551 | 568 | 689 | 446 | 50 | 96 | 110 | 435 | 325 | 232 | 164 | 250 | 104 | 206 | 96 | 251 | 114 | 560 | 383 |
| Response rate (%) | 22 | 13 | 23 | 26 | 57 | 36 | 43 | <20 | 60 | 70 | 66 | 65 | 50 | 70 | 80 | 52 | 61 | 28 | 47 | 21 | 37 | 26 |
| Sex Male | 41 | 45 | 52 | 53 | 61 | 48 | 36 | 38 | 41 | 50 | 67 | 53 | 42 | 46 | 23 | 45 | 64 | 62 | 48 | 63 | 88 | 92 |
| Female | 59 | 55 | 48 | 47 | 39 | 52 | 64 | 62 | 59 | 50 | 33 | 47 | 58 | 54 | 77 | 55 | 36 | 38 | 52 | 37 | 12 | 8 |
| Urban | 77 | 71 | 73 | - | 78 | 54 | 90+ | 80 | 85 | 89 | 49 | 85 | 58 | 87 | 96 | 88 | 31 | 73 | 75 | 79 | 63 | 66 |
| Age (years) | ||||||||||||||||||||||
| Mean age | 47.4 | 45.2 | 41.7 | 39.8 | 30.6 | 37.2 | 36.3 | 33.4 | 20.8 | 18.1 | 21.1 | 21.8 | 21.3 | 21.1 | 19.3 | 21.0 | 40.8 | 42.5 | 41.8 | 42.0 | 40.7 | 40.0 |
| ²20 | 5 | 5 | 3 | 4 | 5 | 0.5 | 9 | 11 | 38 | 92 | 29 | 22 | 20 | 3 | 69 | 10 | 7 | 4 | 9 | 5 | 0 | 0 |
| ²30 | 18 | 19 | 21 | 24 | 55 | 18 | 28 | 37 | 60 | 8 | 70 | 77 | 80 | 97 | 31 | 90 | 33 | 35 | 29 | 29 | 17 | 15 |
| ²40 | 15 | 20 | 26 | 23 | 22 | 43 | 28 | 14 | 1 | 0 | 1 | 1 | 0.5 | 0 | 0 | 0 | 47 | 40 | 40 | 46 | 34 | 34 |
| ²50 | 14 | 15 | 19 | 25 | 13 | 31 | 17 | 23 | 1 | 0 | 0.2 | 0 | 0 | 0 | 0 | 0 | 13 | 20 | 21 | 19 | 25 | 32 |
| ²60 | 15 | 12 | 14 | 12 | 4 | 7 | 11 | 9 | 0 | 0 | 0 | 0 | 0 | 0 | 0 | 0 | 0 | 1 | 1 | 1 | 21 | 17 |
| 61+ | 33 | 29 | 17 | 12 | 1 | 0.2 | 7 | 6 | 0 | 0 | 0 | 0 | 0 | 0 | 0 | 0 | 0 | 0 | 0 | 0 | 3 | 2 |
| Marital status | ||||||||||||||||||||||
| Single | 25 | 26 | 29 | 29 | 53 | 38 | 33 | 34 | 95 | 98 | 99 | 97 | 99 | 99 | 99 | 100 | 9 | 6 | 13 | 16 | 22 | 24 |
| Married | 59 | 62 | 66 | 66 | 45 | 59 | 54 | 62 | 3 | 0 | 1 | 2 | 0.4 | 1 | 0.4 | 0 | 83 | 86 | 79 | 70 | 77 | 74 |
| Other | 16 | 12 | 5 | 5 | 2 | 3 | 13 | 4 | 2 | 2 | 0 | 1 | 1 | 0 | 1 | 0 | 8 | 8 | 8 | 14 | 1 | 2 |
| Children | ||||||||||||||||||||||
| No child | 33 | 39 | 40 | 35 | 55 | 22 | 41 | 48 | 97 | 100 | 100 | 98 | 96 | 100 | 99 | 100 | 22 | 15 | 24 | 24 | 30 | 28 |
| Pregnant | 1.4 | 1 | 1 | 2 | 3 | 2 | 0.5 | 4 | 1 | 0 | 0 | 1 | 0 | 0 | 0.4 | 0 | 3 | 1 | 1 | 1 | 1 | 1 |
| One | 8 | 6 | 9 | 14 | 16 | 24 | 29 | 6 | 1 | 0 | 0 | 0.4 | 2 | 0 | 1 | 0 | 8 | 8 | 12 | 13 | 15 | 13 |
| Two | 26 | 25 | 36 | 32 | 19 | 39 | 24 | 21 | 1 | 0 | 0 | 0 | 2 | 0 | 0 | 0 | 39 | 38 | 31 | 27 | 36 | 40 |
| More than2 children | 31 | 29 | 14 | 17 | 7 | 13 | 5 | 21 | 0 | 0 | 0 | 0.4 | 0 | 0 | 0 | 0 | 28 | 38 | 32 | 35 | 18 | 18 |
| Education | ||||||||||||||||||||||
| High school | 43 | 36 | 37 | 37 | 4 | 2 | 13 | 16 | 29 | 94 | 54 | 7 | 4 | 0 | 23 | 71 | 1 | 0 | 1 | 1 | 0 | 0 |
| 2 year college/technical | 18 | 15 | 19 | 22 | 6 | 3 | 18 | 20 | 48 | 4 | 6 | 13 | 18 | 0 | 77 | 3 | 1 | 2 | 0.4 | 1 | 0.2 | 1 |
| graduate degree | 25 | 28 | 31 | 31 | 31 | 35 | 37 | 39 | 20 | 2 | 38 | 27 | 60 | 50 | 0 | 6 | 64 | 58 | 59 | 57 | 78 | 82 |
| postgraduate degree | 9 | 16 | 10 | 7 | 52 | 59 | 28 | 25 | 3 | 0 | 0 | 51 | 13 | 47 | 0 | 8 | 30 | 37 | 39 | 41 | 21 | 17 |
| other | 5 | 5 | 3 | 3 | 7 | 1 | 4 | 0 | 0 | 0 | 2 | 2 | 5 | 3 | 0 | 4 | 4 | 3 | 0.4 | 0 | 0.8 | 0.3 |
| How important is religion? | ||||||||||||||||||||||
| Very important | 27 | 23 | 10 | - | 40 | 46 | 10 | 38 | 28 | 19 | 5 | 36 | 54 | 89 | 32 | 21 | 20 | 17 | 42 | 47 | 7 | 10 |
| Some important | 26 | 27 | 33 | - | 27 | 44 | 38 | 16 | 20 | 41 | 16 | 24 | 38 | 11 | 41 | 40 | 17 | 29 | 23 | 26 | 25 | 37 |
| Not too important | 27 | 24 | 40 | - | 15 | 8 | 28 | 34 | 18 | 20 | 34 | 18 | 7 | 0 | 22 | 26 | 33 | 32 | 19 | 10 | 45 | 36 |
| Not at all important | 20 | 26 | 17 | - | 18 | 2 | 24 | 12 | 34 | 20 | 45 | 22 | 0.4 | 0 | 5 | 13 | 30 | 22 | 16 | 17 | 23 | 17 |
| Religion | ||||||||||||||||||||||
| None | 25 | 25 | 39 | - | 2 | 0.2 | 20 | 0 | 45 | 32 | 68 | 3 | 0.4 | 0 | 25 | 60 | - | - | - | - | - | - |
| Christian | 70 | 71 | 8 | - | 34 | 0.4 | 57 | 0 | 49 | 41 | 5 | 24 | 1.7 | 99 | 24 | 40 | - | - | - | - | - | - |
| Moslem | 0 | 0 | 0 | - | 4 | 0.6 | 6 | 2 | 1 | 4 | 0 | 7 | 0.4 | 0 | 11 | 0 | - | - | - | - | - | - |
| Buddhist | 0.3 | 1 | 47 | - | 0.4 | 99 | 2 | 0 | 2 | 6 | 24 | 0 | 97 | 1 | 36 | 0 | - | - | - | - | - | - |
| Hindu | 0 | 0 | 0 | - | 59 | 0 | 0 | Jew: | 0 | 2 | 0 | 65 | 0.4 | 0 | 4 | 0 | - | - | - | - | - | - |
| Other | 5 | 4 | 6 | - | 1 | 0.3 | 1 | 98 | 3 | 15 | 3 | 2 | 0.4 | 0 | 3 | 0 | - | - | - | - | - | - |
| Awareness of human gene therapy | ||||||||||||||||||||||
| Not heard of it | 26 | 23 | 23 | - | 27 | 10 | 22 | 20 | 7 | 16 | 6 | 19 | 15 | 8 | 25 | 29 | 2 | 26 | 4 | 20 | 3 | 21 |
| Heard of it | 57 | 50 | 58 | - | 47 | 70 | 57 | 48 | 28 | 48 | 56 | 55 | 71 | 66 | 59 | 55 | 22 | 44 | 16 | 40 | 35 | 61 |
| Could explain it to a friend | 17 | 27 | 19 | - | 26 | 20 | 21 | 32 | 65 | 36 | 38 | 26 | 14 | 26 | 16 | 16 | 76 | 30 | 80 | 40 | 62 | 18 |
1J91 from Japan 1991 survey (Macer, 1992a, 1992b).
Awareness of gene therapy
The awareness of gene therapy was examined only by personal opinion of the respondents, with the results shown in the bottom of Table 1. The awareness of gene therapy was the lowest among the 8 developments in science listed (others included pesticides, in vitro fertilisation, computers, biotechnology, nuclear power, AIDS, genetic engineering) (Macer, 1994b). The samples with the greatest awareness were biology teachers, next were medical students (New Zealand, Japan, Australia and the Philippines), followed by the other groups, social studies teachers, biology students and the general public (Table 1).
In the USA in 1992, when asked "How much have you heard or read about gene therapy, 60% said "almost nothing", 26% said "relatively little", 10% a "fair amount", and 3% "a lot" (March of Dimes, 1992). In the International Bioethics Survey, the term "genetic engineering", was significantly more familiar in all samples. Awareness of both terms was significantly related to educational attainment. There was no question requiring respondents to explain their understanding of technologies. An indirect measure of the depth of knowledge was gained through the responses to the open questions.
Reasoning expressed about gene therapy
About three quarters of all samples supported personal use of gene therapy (Q26), with higher support for children's use of gene therapy (Q27), as shown in Table 2. The acceptance of gene therapy was somewhat higher among students than the public, but there was greater difference seen among countries. Indians were the most supportive, and Thais the least for personal use, but when asked about use on children, Thai respondents were among the most willing. When compared to the USA results, we find a general tendency for Asians to be more accepting of gene therapy. We did not find any significant differences dependent upon sex, age, education or religiosity.
It is interesting methodologically that we find the least number of people who say that they "don't know" in the USA surveys using telephone interviews. We think it is inconsistent with the idea that the low response rate of mail surveys selects those who are more informed and have made up their mind compared to the higher response rates of telephone surveys. Separate questions in the US surveys exploring knowledge of gene therapy did not find the samples to be especially well informed (OTA, 1987, March of Dimes, 1992). We also know the educational attainment of the respondents in the mail surveys were at least as high as the US sample, so the response "don't know" refers to the decision itself, and the results suggest it is relatively independent of education (i.e. no significant general trends were found in the data). One third of Russians said that they did not know, the highest of all samples, however, as noted, their level of education was high (Table 1). The low percentage of don't know responses in the USA makes us question the reliability of telephone surveys for predicting decision-making, and it is a point for further analysis in the future. There are several ways to interpret this, and it may be that people don't like to admit they don't know on the telephone.
The reasons people gave are among the more interesting parts of the surveys, and are the major benefit of mail surveys with open questions. Many are given in Macer (1994a). The ideas expressed in each comment were assigned to categories, with up to two categories per comment. This method was used for general questions on genetic engineering in a Japanese survey in 1991 (Macer, 1992a, 1992b). In that survey the same two questions were used (Q26, Q27), and it was found that some respondents wrote comments on the questionnaire. Therefore we decided to add the question "why?" to the specific gene therapy questions, as well as to other questions.
To illustrate the process that was used, some comments are quoted below. The questionnaires provide an interesting resource of peoples comments, and further analysis is possible on more specific themes within the comments. The following are examples of open comments, under the "reasons" which appear in Table 2 (Abbreviation codes: V=very willing; W=somewhat willing; U=somewhat unwilling; X=very unwilling; D=don't know; Q26 or Q27; comments from the same person are separated by ";")
Don't know
I don't know how I would react if faced with life or death. 26D
It is doubtful whether such therapy exists or is possible. 26D
I don't know without consideration of the future with my family. 26D
I cannot answer by only this information. 26,27D
I feel like taking it to be healthy, however, I am afraid also because it may be against God's will. But when I think of my children, I might have them take the therapy because I am sorry for them and I have responsibility as their parent. 26,27D
Save life
Endeavour to save life or make the child more comfortable. 27V
To prolong my life! 26V
Mother instinct to try anything for her child. 27V
To possibly prevent future illness. 26V
Basic survival instinct. 26W; Would step over all principles to save my child. 27V
If I can become healthier. 26W
The happiness of mine and my family is more important than the future of the human race. I cannot be such a good-natured person. 27V
I cannot understand the meaning of the question. There must be no parent who doesn't want to treat a fatal disease of their child, except those who believe in a peculiar religion. Many parents may be at a loss when to answer to this question. 27V
Since I think it is an instinct to want to be helped without reasons if the death is faced immediately. Also, since it is parental love to want to help the life of their child above anything else. 26,27V
Saves family
I don't want to see my kids go through life with pain and not knowing when or what's going to happen to my kid latter on in life. Or whether my kid will live through life. 27V (+save live)
So I won't be a burden on anyone. 26V
If it would help I would - I have a young family that I feel responsible for and I would feel I'd let them down if I didn't try. 26V
To live a full life, ease the burden on care giver. 26V (+ quality of life)
I would take what help is available - so that I am not a bother to other people. 26V (+ save life)
I love my daughter and could not live without her. 27W (+ save life)
People around me may have trouble and I don't want them to do so. 26,27V
Because we have the right to give birth to babies. 26V
Not to have a heavy burden to people who are around, like family. 26V
Improve quality of life
To enjoy life as best as possible.26V
Must improve quality of life in later years. 26,27V
It would depend on the quality of life it could offer and its affordability. 17D (+depends on situation)
To help your quality of life and those close to you. 26U; Hopefully to improve your quality of life. 27U
I want to have a reasonable quality of life. 26V; I would also want my child to have a reasonable quality of life. 27V
To give the child every opportunity to live a full and natural life. 27V
I want my child to be same as a normal person who doesn't have a disease. 27V (+save life)
Now in Japan, it is rather hard for weak people to live. And social security has not been prepared yet. I want to spend my life more normal if possible because the life is only one time. 26,27V
Since we have the right to the pursuit of a better life. 26,27V
It's good for the person if she/he can live a happy social life. 26V
Depends on situation
It would depend on type of disease, cost of treatment, my age, and responsibility to others. 26D
I am 85 and ready to go when my time is up. 26D; Depends on the treatment and what the result would be. 27D
I know what I feel morally but may change my mind if I needed help. 26,27D
I cannot understand the meaning of correcting genes very much (what is done and what result actually happens) , though, personally I would like to live facing my life as long as my body has a life. About my child, I may think of it if it can be treated, however. 26X,27D
Respecting my child's will. 27W
Well, about my child. It's OK to change it partly, though, I don't want to change reproductive cells. 27D
Improve genes
To live longer and not to pass it on to offspring. 26W (+save life)
I don't care if it is only my problem, however, I want to avoid a defect down to my child. 26,27V
Because I want to end the genetic disease in my generation if possible. 26V
I cannot bear to hand a bad gene down to my descendant and to have troubled them. 26W
By thinking about my descendants. 26V (+ save life)
Because bad genes should be removed. 26,27V
Because I feel responsibility since genetic diseases are because of parents' gene. But I don't want them to take it if it's dangerous. 27W (+health risk)
Other benefit
I would rely much more on the power of the Lord Jesus in prayer. 26W
Help advance scientific knowledge for future sufferers. 26W; As above, and at least there is hope. 27W
It might fail, though, we will die anyhow and the treatment method may be researched progressively one after another if there are others who have the same disease. 26V
Economic comment
Waste of money. 26,27U
Eugenics/Misuse
The thin edge of the wedge. Play on personal preservation notion as a persuasive argument in favour of unleashing 'Pandoras Box'... 26,27X
Fear of unknown, potential for where this type of treatment might lead. 26,27U
Danger of unforeseen consequences to human race. 26,27U
Because a bad gene is needed from the viewpoint of the species. 26U
Playing God / Interfering with Nature
Nature put it there so nature can take it away. 26X
I am wondering whether mere human beings might fumble with the genes of living things. 26D
Whether it is a gene or a body, an important thing is that it is temporarily left in my keeping until the day my life comes to an end. However I want to take good care of it. I don't want to make it more or less than it is. 26U
Because I suppose it may be my destiny. 26U
Because it is against nature. 26U
I don't want to correct genes which were inherited from my parents. 26X
I will take it if there's little risk. But such genes should be naturally selected. 26U,27W
Against Ethics
When I ethically think of it, I don't like to correct genes, though, we cannot take such a resolve attitude for an emotional problem. 26,27D
Though I cannot declare whether it is right or not ethically, I would like to cure the disease. 26,27V
Health risk
If there were minimal risks. 27V
Short term relief (therapy) may trigger complications. 26,27U
If my child was not in pain and there was no increased risk to her health. 27W
Though I don't spare my cooperation as possible, the safety to next generation could not be guarantied. 27U
Because I am not sure of the details of the treatment and the risks. 26,27D
I don't want my child to be used as a guinea pig. 27D
Other harm
I do not have absolute faith in the medical profession. 26U
One problem is risk. Another one is that it may not be only disadvantage, such as sickle cell disease has resistance to malaria in Africa. 26,27U
Because there's a possibility not to be taken ill. I am very afraid to play with genes. 26,27U
Because I don't think everything will be good by the therapy. 26U
The numerical description of the results is in Table 2. The major reasons were to save life and increase the quality of life. The same responses were given for Q26 and Q27 by many persons. Significant proportions of the New Zealand and Australian respondents gave a reason that it depends upon the situation. In Thai students one third gave a reason that it would save their family, which was significantly higher than any other sample, and the same result was found for Q26 and Q27, because most replied in Q27 "same as in Q26". This may suggest a close family structure, however in questions about the privacy of genetic disease, there was similar sense of family interdependence in most countries, with Japan, the Philippines and Thailand showing most willingness to share genetic information inside the family (Macer, 1994b).
Some respondents gave a reason like "improving genes", which will be discussed below under "enhancement". About 5-7% rejected gene therapy considering it to be playing God, or unnatural. There was very little concern about eugenics (0.5-2%). The most significant reason for disapproving of gene therapy was health risk, except in Thailand where more people gave a response that it was unnatural.
| % | |||||||||||||||||||||
|
Q26. If tests showed that you were likely to get a serious or fatal genetic disease later in life, how willing would you be to undergo therapy to have those genes corrected before symptoms appear? Why? | |||||||||||||||||||||
| ++ | 35 | 30 | 25 | 47 | 50 | 42 | 61 | 35 | 23 | 54 | 52 | 43 | 44 | 60 | 34 | 43 | 49 | 40 | |||
| + | 43 | 49 | 29 | 25 | 27 | 24 | 16 | 20 | 24 | 16 | 34 | 44 | 30 | 14 | 30 | 35 | 34 | 38 | |||
| - | 12 | 9 | 18 | 9 | 6 | 15 | 5 | 11 | 6 | 4 | 3 | 2 | 11 | 2 | 11 | 11 | 6 | 6 | |||
| -- | 9 | 9 | 12 | 4 | 4 | 6 | 4 | 24 | 13 | 0 | 3 | 2 | 5 | 4 | 16 | 3 | 2 | 3 | |||
| DK | 2 | 2 | 16 | 15 | 13 | 13 | 14 | 10 | 34 | 26 | 7 | 6 | 10 | 20 | 9 | 8 | 9 | 13 | |||
| N | 318 | 195 | 335 | 529 | 684 | 414 | 50 | 96 | 110 | 421 | 310 | 230 | 151 | 249 | 104 | ||||||
| Not stated | 16 | 14 | 32 | 37 | 23 | 60 | 58 | 15 | 17 | 29 | 38 | 15 | 38 | 38 | 35 | ||||||
| Don't know | 2.5 | 0.5 | 2.7 | 1.1 | 3.1 | 7.0 | 0 | 0 | 0 | 3.3 | 1.9 | 2.2 | 1.3 | 0.4 | 0 | ||||||
| Saves life | 34 | 43 | 26 | 41 | 19 | 13 | 24 | 52 | 38 | 38 | 41 | 21 | 39 | 39 | 43 | ||||||
| Saves family | 4.4 | 5.6 | 3.3 | 4.7 | 2.6 | 0 | 2 | 2.1 | 0 | 0.2 | 3.2 | 31 | 1.3 | 2.0 | 1.9 | ||||||
| Improve quality of life | 15 | 13 | 9.6 | 3.4 | 5.6 | 1.2 | 4 | 7.3 | 15 | 4.5 | 5.2 | 16 | 5.9 | 3.6 | 1.0 | ||||||
| Depends on situation | 19 | 25 | 9.0 | 4.3 | 12 | 4.8 | 12 | 28 | 38 | 11 | 3.9 | 9.5 | 3.3 | 6.4 | 11 | ||||||
| Improve genes | 1.9 | 0.5 | 5.4 | 5.5 | 8.6 | 0.2 | 0 | 2.1 | 0.9 | 1.9 | 6.1 | 6.0 | 2.6 | 2.8 | 3.8 | ||||||
| Other benefit | 7.0 | 4.1 | 11 | 1.1 | 2.9 | 2.7 | 0 | 2.1 | 1.8 | 2.9 | 3.2 | 0.9 | 0 | 0.8 | 2.9 | ||||||
| Economic comment | 1.9 | 1.0 | 0 | 1.3 | 1.3 | 1.4 | 0 | 0 | 1.8 | 0 | 1.3 | 0.9 | 0.7 | 1.6 | 0 | ||||||
| Eugenics/Misuse | 0.9 | 0 | 1.8 | 0.4 | 0.9 | 0.5 | 0 | 0 | 0 | 1.7 | 0 | 0 | 0 | 0 | 0 | ||||||
| Playing God/unnatural | 5.3 | 7.2 | 5.1 | 4.5 | 15 | 0 | 2 | 9.3 | 5.5 | 5.2 | 1.6 | 20 | 2.0 | 5.2 | 6.7 | ||||||
| Against ethics | 0.6 | 0 | 0.3 | 0 | 0.3 | 0.5 | 0 | 0 | 0.9 | 1.0 | 0 | 0 | 0 | 0 | 0 | ||||||
| Health risk | 8.0 | 10 | 5.7 | 2.8 | 3.4 | 5.1 | 8 | 3.1 | 3.6 | 10 | 4.2 | 0 | 12 | 6.4 | 11 | ||||||
| Other harm | 3.1 | 2.1 | 3.6 | 1.5 | 0.2 | 3.4 | 2 | 0 | 0 | 2.4 | 0.3 | 0 | 1.3 | 1.2 | 1.9 | ||||||
|
Q27. If you had a child with a usually fatal genetic disease, how willing would you be to have the child undergo therapy to have those genes corrected? Why? | |||||||||||||||||||||
| ++ | 51 | 52 | 37 | 60 | 57 | 53 | 73 | 67 | 35 | 62 | 58 | 49 | 51 | 70 | 79 | 57 | 67 | 59 | |||
| + | 35 | 36 | 29 | 22 | 25 | 21 | 10 | 16 | 24 | 18 | 26 | 39 | 25 | 9 | 13 | 24 | 24 | 26 | |||
| - | 7 | 5 | 11 | 3 | 2 | 10 | 3 | 2 | 5 | 2 | 5 | 4 | 7 | 3 | 1 | 7 | 3 | 4 | |||
| -- | 4 | 4 | 7 | 2 | 2 | 1 | 3 | 5 | 6 | 0 | 1 | 1 | 2 | 4 | 2 | 3 | 0 | 3 | |||
| DK | 3 | 3 | 16 | 13 | 14 | 15 | 11 | 10 | 30 | 18 | 10 | 7 | 15 | 14 | 5 | 9 | 6 | 8 | |||
| N | 317 | 196 | 335 | 527 | 675 | 436 | 50 | 96 | 110 | 417 | 309 | 230 | 150 | 173 | 104 | ||||||
| Not stated | 16 | 13 | 29 | 41 | 23 | 62 | 62 | 16 | 16 | 32 | 39 | 15 | 39 | 60 | 35 | ||||||
| Don't know | 1.0 | 0.5 | 2.1 | 1.3 | 3.9 | 4.8 | 0 | 0 | 0 | 2.6 | 1.3 | 2.2 | 1.3 | 0.4 | 0 | ||||||
| Saves life | 42 | 44 | 36 | 42 | 24 | 17 | 22 | 49 | 47 | 40 | 43 | 21 | 37 | 27 | 43 | ||||||
| Saves family | 1.6 | 2.6 | 2.7 | 2.1 | 8.4 | 0 | 2 | 3.1 | 0.9 | 0 | 0.6 | 31 | 0 | 1.2 | 0 | ||||||
| Improve quality of life | 23 | 19 | 13 | 8.3 | 17 | 0.9 | 6 | 13 | 16 | 5.0 | 9.1 | 16 | 11 | 7.6 | 2.9 | ||||||
| Depends on situation | 20 | 31 | 13 | 2.3 | 33 | 5.5 | 10 | 27 | 33 | 16 | 2.9 | 0.9 | 4.0 | 2.0 | 14 | ||||||
| Improve genes | 0.3 | 0 | 2.7 | 5.7 | 9.9 | 0.5 | 0 | 0 | 0.9 | 1.2 | 4.9 | 7.4 | 0.7 | 0.4 | 0 | ||||||
| Other benefit | 6.0 | 2.0 | 6.6 | 1.3 | 2.5 | 2.5 | 0 | 1.0 | 1.8 | 1.2 | 1.9 | 0.9 | 1.3 | 0.4 | 1.0 | ||||||
| Economic comment | 0.9 | 1.0 | 0 | 1.1 | 0.9 | 1.4 | 0 | 0 | 0.9 | 0 | 0.7 | 0 | 0 | 0 | 0 | ||||||
| Eugenics/Misuse | 0.6 | 0 | 1.2 | 0.4 | 0.3 | 0 | 2 | 0 | 0 | 1.2 | 0 | 1.3 | 0 | 0 | 0 | ||||||
| Playing God/unnatural | 2.2 | 4.6 | 2.1 | 2.3 | 2.2 | 0 | 0 | 1.0 | 2.7 | 2.4 | 0.3 | 0.9 | 1.3 | 0.8 | 1.9 | ||||||
| Against ethics | 0.3 | 0 | 0.3 | 0.2 | 0 | 0 | 0 | 0 | 0.9 | 0.7 | 0 | 0.4 | 0 | 0 | 0 | ||||||
| Health risk | 4.4 | 7.7 | 5.7 | 2.1 | 3.6 | 4.4 | 6 | 6.3 | 2.7 | 8.9 | 4.5 | 0.9 | 9.9 | 4.8 | 8.7 | ||||||
| Other harm | 0.6 | 0.5 | 2.4 | 1.1 | 0.3 | 1.6 | 2 | 1.0 | 0 | 1.2 | 1.0 | 1.7 | 0.7 | 0.4 | 2.9 | ||||||
++ Very willing + Somewhat willing
-Somewhat unwilling -- Very unwilling DK Don't know
Abbrevations: J91
- Japan 1991 (Macer, 1992a, N=532); US86
(OTA, 1987, N=1273); US92 (March of Dimes
Survey, 1992, N=1032).
Table 3: Acceptance of gene therapy for specific cases in International Bioethics Survey
Q28. How do you feel about scientists changing the genetic makeup of human cells to:
++ Strongly Approve + Somewhat Approve - Somewhat Disapprove - - Strongly Disapprove DK Don't know *UK sample from 1994, see text.
| a. Cure a usually fatal disease, such as cancer | ||||||||||||||||||||||||
| ++ | 58 | 60 | 42 | 54 | 78 | 72 | 58 | 48 | 57 | 67 | 63 | 41 | 62 | 86 | 67 | 70 | 54 | 61 | 63 | 60 | 65 | 65< | ||