The advances in biology and medicine have brought many benefits to people and society, from curing disease to growing more tomatoes in the garden. At the same time we are all becoming aware of the difficult issues science and technology raise, both global issues such as the ozone hole and personal dilemmas like in vitro fertilisation, so-called test tube babies. Some of these issues were the topic of the International Bioethics Survey, which asked ordinary people what and how they think. Further philosophical background behind the survey is in the first section of this book, on Universal Bioethics.
Bioethics is the study of ethical issues associated with biology or life, and in simple terms it could be called a love of life. It is looking at how we make decisions, whether we want to donate our kidneys, to check if the fetus of a pregnant woman is healthy, or has a genetic disease, or how to cope with the bad news that someone has cancer or AIDS. Do people balance the benefits and risks of using pesticide or medicines in the same way? How much do people value the privacy of others or themselves or family? What do people think about life or nature? Should sick people pay for their own medicine or is it community responsibility? Do we want to screen our genes to predict whether we will get Alzheimer's disease or cancer?
In 1993 a survey was performed across ten countries of the world, including Australia, Hong Kong, India, Israel, Japan, New Zealand, The Philippines, Russia, Singapore and Thailand. The results can be compared to surveys in North America and Europe. The purpose was 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.
Three population samples were chosen for these International Bioethics Surveys, 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. Both survey forms are found later in this book, alternative language versions are available. The surveys were sent with stamped return envelopes, and people were asked to respond (within each country).
The 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, as they included not only public samples but also academics. Student samples were chosen from selected medical schools (Australia (N=110), Japan (N=435), New Zealand (N=96), the Philippines (N=164)), a medical laboratory course (Hong Kong (N=105)) and biology students (India (N=325), Singapore (N=250) and Thailand (N=232)). Students were generally similar to the public within each country, with most questions being age independent. The high school teacher surveys were national, using randomly selected biology and social studies teachers, in Japan (N=560 biology; N=383 social), New Zealand (N=206 biology; N=96 social) and Australia (N=251 biology; N=114 social). The funding for these surveys comes from principally from the Eubios Ethics Institute, with some assistance from the ELSI (Ethical, Legal, and Social Impact issues) group of the Japanese Ministry of Education, Science and Culture Human Genome Project, and The University of Tsukuba. The high school samples in Japan are supported by the Ministry of Education, and are part of a longer term project to develop high school materials to teach about bioethical issues in the biology and social studies classes.
In total nearly 6000 questionnaires were returned from 10 countries during 1993, and the results are included in this book, though the comments and statistical relationships will continue to be further analysed for some time. The questionnaires included about 150 questions in total, with 35 open-ended questions. The open questions were designed not to be leading, to look at how people make decisions - and the ideas in each comment were assigned to different categories depending on the question, and these categories were compared among all the samples. Out of ethical commitment to those who participated in the survey, I believe it is important to release all these data as soon as possible for other people to use.
The results find that the diversity of comments, both the yes/no's and the reasons behind them, are basically the same in all these different countries. This suggests that people are not very different from each other - and similar range of opinions is seen in every sample, generally independent of race, religion, sex, age or education. This has a number of implications, one being that people are the same varied bunch all over; that means that someone in a distant country is just as likely to have the same views as someone close to home.
A basic question is who should decide policy on health care, and the democratic answer is that the public should. This survey was conducted to find out what people think, and may be useful to help form future policy. Many issues are personal in nature, and ethically should remain open to the informed choices of people - the users of medicine and agriculture. Ordinary people are often excluded from decision-making, both in their encounter with their physicians, or in national policy. Some issues are international, for example, if someone starts genetic engineering to cure disease in future children, those children will move around the world and the genes will be passed onto people in other countries - so it is rather pointless for one country to ban it if the neighbouring country approves it. The same applies to global environmental issues - a global response is required. We live in an international age, and our thinking is required to be wider than our own small sphere. The finding that people in different countries are similar, and the diversity is similar, means that it should not be any more difficult to reach international consensus on these issues because of any differences in people's views, than national consensus. The problem is more at the level of politics - where people seeking power may want to exert this power and draw up national differences - they want to say "We are different", to justify the different policies which preserve their power. From the data obtained in this survey they can no longer say their positions are based on fact - though most will still pursue their positions based on prejudice.
The results of the International Bioethics Survey are in the data tables following the end of this section (p.186-215), including open comments (all open comments on life and nature, and examples of the others for explanation of the categories). The chapters in this section look at interesting features of the results for each region, and do not repeat the statistics which are found in the data tables. The chapters are intended to point out featuresof the results, with brief background for better understanding of the data. A critique of the value of surveys such as this for questions of bioethics is also to be found, at the end of the section (p.174-176). The general outline for each country includes:
The analysis includes papers on New Zealand and Australia, Japan, Russia, India, Thailand, Singapore and Hong Kong, Philippines; a critique on use of bioethics surveys to quantify ethics, with a response; followed by a report on bioethics in high schools in New Zealand, Australia and Japan. In this overview only some features of the survey will be given, the country details are in each chapter.
The word "biotechnology" simply means using living organisms, or parts of them, to provide goods or services. The word can apply to agriculture in the past thousands of years, but is often used to apply to new techniques. We should not forget that all civilisations were formed needing food, clothes, and medicines, and in that sense biotechnology is not new. What is new is that we can now make new varieties much more quickly, and with greater variation - and some foodstuffs made from plants bred using genetic engineering are already being sold in parts of the world. They will generally be no different to the foods we already eat, but some can avoid the use of chemical pesticides which damage the environment. One part of the survey was looking at agricultural and environmental issues, and concerns and perceptions of genetic engineering.
There have been several major surveys on attitudes to biotechnology. The public image of biotechnology is useful for different groups of people. These type of studies have at least two purposes, one being academic study, and the other being public relations for the biotechnology industry. Both of these purposes are relevant to policy. The studies that I will generally refer to are academic, as is this study. As I said in the conclusion to a previous book reporting survey results (Macer, 1992a), it is up to the ethics of the readers of this book that the data is used in the spirit in which it was conducted.
There are various strategies being used to study public opinion. The first type is the use of fixed response questions, to chose from set answers, and this has been done in the USA. The major study in 1986 was the Office of Technology Assessment study (OTA, 1987). In 1992 there was a study by Hoban and Kendall (1992), looking at agricultural issues. There has also been comparative studies of scientists in USA and in Europe, looking at their perceptions of the public image of genetic engineering (Rabino, 1991; 1992). In 1993 there was a survey conducted by the Canadian Institute of Biotechnology in Canada also, the partial results of which have been made public (CIB, 1994). While these surveys provide some assessment of public acceptance, they generally use simple set questions. The Eurobarometer is a regular public survey in Europe, including different questions each time, and is conducted in all 12 countries of the European Community. In 1991 Eurobarometer 35.1 looked at biotechnology and genetic engineering, and in 1993 Eurobarometer 37.1 repeated the same questions. The report is available from the EC, which is necessary for anyone interested in the public attitudes to biotechnology in a global fashion. The Eurobarometer poll is limited because of the relatively small number of questions, and also the set format of the questions, but is the most comprehensive in terms of sample response, randomness, size, and number of countries. There is some diversity within Europe, in biotechnology policy, public acceptance, and regulations.
Recent survey strategies in Europe look at reasoning more than just statistics (Hamstra, 1991, 1992, 1993; Martin & Tait, 1992) which may shed more light on the factors which will affect policy development. In New Zealand there was also a study using both set and open questions in 1990 (Couchman & Fink-Jensen, 1990). In Japan there have been several studies, the most comprehensive of these being a study that I did in 1991, among public, academics, and high school teachers, in which I also reviewed all the previous studies in Japan (Macer, 1992a, b). In these surveys I used open questions, and found that some arguments that are often used in biotechnology debates, such as eugenic fears or environmental risk, are not the major concerns voiced by people in open questions. The more common concerns are interference with nature or general fear of a less concrete nature. Also the survey found that many people perceive both benefit and risk simultaneously, they are attempting to balance these; and also educated people show as much concern, in fact biology teachers considered there was more risk from genetic engineering than ordinary public (Macer, 1992a; 1993). This result was confirmed for Japan in 1993, and the level of concern was similar in Australia and New Zealand (p.198).
Martin and Tait (1992), conducted surveys of selected groups of the UK public. They conclude that groups with an interest in biotechnology have probably already formed attitudes to it, which are unlikely to significantly change. They looked at industry and environmental groups, and local communities, which are major players in the development of policy at both national and local levels. They also suggest that people with the least polarised attitudes are most open to multiple information sources. Consumer research in the Netherlands (Hamstra, 1992) conducted by SWOKA - an Institute for Consumer Research, has involved two major studies of what people in the Netherlands think about eating foods made through biotechnology.
In all countries of the International Bioethics Survey there was a positive view of science and technology, it was perceived as increasing the quality of life by majority in all countries (p. 190), with India being the most negative. However, less than 10% in all countries saw it as doing more harm than good (p. 211). When asked about specific developments of technology, including in vitro fertilisation, computers, pesticides, nuclear power, biotechnology and genetic engineering, both benefits and risks were cited by many respondents (p. 192-198). People do show the ability to balance benefits and risks of science and technology (Macer, 1992a, 1993). People do not have a simplistic view of science and technology, and can often perceive both benefits and risks. This balancing of good and harm is necessary for bioethics, and I have called this one indicator of the bioethical maturity of a society.
Consistent with North American surveys, in particular the survey of Hoban and Kendall (1992) from which Q9-12 were taken from, in all the countries in this survey, plant-plant gene transfers (Q9) were most acceptable, with animal-animal (Q11) next, and animal-plant (Q10) or human-animal gene transfers (Q12) were least acceptable (p. 212-213). In the USA the proportion accepting these were 66% (Q9), 39% (Q11), 25% (Q10), and 10% (Q12) (Hoban & Kendall, 1992), and the trend was also seen in Canada (CIB, 1994). A variety of reasons were cited, as was the case in questions about the concerns of consuming products made from genetic engineering (Q14, p. 199-201). The results of that question found similar concerns to the surveys in New Zealand (Couchman & Fink-Jensen, 1990) and Japan (Macer, 1992a), with people having most concern about meat. One of the main concerns was that the products would be unnatural, but there were also a variety of other comments. In the previous survey in Japan (Macer, 1992a) a series of open questions were also asked about genetic engineering, which give complimentary information on the reasoning people have. The questioned used (Q9-12) in this survey were more specific, but some people made comments that suggested they were looking at secondary aspects, such as whether they liked potato or chicken. The generally higher fears about animal genetic engineering, and meat, is also seen in Europe (Eurobarometer 37.1; Hamstra, 1991, 1992, 1993).
When specific details of an application were given there was generally greater acceptance, suggesting people have some discretion (Macer, 1992ab). It also suggests that if details are given the public will show greater acceptance of an application, especially for human gene therapy (p. 202-203, 205). This is seen in the questions looking at environmental release of genetically modified organisms (Q31, p. 204), which were taken from the OTA survey (1987), with comparisons to a question of Hoban & Kendall (1992). The approval of a modified tomato which has delayed ripening for general growth in the USA was given in 1993, and it is expected to be approved for general commercial food consumption by the FDA soon. It would be generally supported around the world.
The healthier meat question is relevant to efforts to make less fatty meat, both by hormones in pigs, and other animals. In the USA in 1992, 45% said "acceptable", 32% "unacceptable" and 23% "don't know" to a similar question (Hoban & Kendall, 1992). In a related question on cows with increased milk, and in the USA in 1992, 36% said "acceptable", 41% "unacceptable" and 23% "don't know" to a similar question in 1992 (Hoban & Kendall, 1992). This has become reality in 1994 with the general use of bovine growth hormone (BST - bovine somatotropin) in the USA dairy industry, a hormone made by genetic engineering that can increase milk yield by 10-20%. It also received less support in the International Bioethics Survey than the goal of less fatty meat, which is consistent with the existing milk surplus in some countries. In a recent telephone survey in the USA conducted by Hoban (1994), it was found that consumers gained confident about consuming milk produced from cows treated with BST after receiving scientific facts attributed to respected agencies (e.g. AMA, FDA, NIH).
The most support is seen for disease-resistant crops, and bacteria to clean oil spills - two uses of genetic engineering that most agree with (Figure 1). The sports fish is an example of genetic engineering for fun - and it is reassuring that many people reject such genetic engineering. The highest degree of support for the sports fish is in the USA where 53% approved in a 1986 survey, while 73% said approved bacteria to clean oil spills or disease-resistant crops. The general support for products of genetic engineering seems to be high, especially if they are claimed to be more healthy. In the Canadian study comparisons between chemicals and genetically engineered organisms usually found less support for chemical methods (CIB, 1994). All these examples of genetic engineering are already made.
These glimpses into the public image of biotechnology provide much food for thought, and show us that the image is a changing one. Although people have always faced risk, and at least in this century, have faced technological forces which transform society, biotechnology has more critics than most. These studies allow us to see whether the critics represent the views of ordinary people, and also how this criticism influences public opinion, which in turn, influences policy. Perhaps this influence is no where stronger then in Europe, as seen in the controversy associated with the bans on the use of bovine growth hormone (BST) made by genetic engineering to boost milk production, and in the debate over patenting policy. At the same time, these studies must be used responsibly, rather than just to allow better plans for the next line of commercials - public attitude making - rather than for seeing what the public has to say. One thing that is likely to stay is the diversity of opinion and reasoning, something which makes these studies interesting.
The issue of patenting genes arose several years ago as the US National Institutes of Health applied for patents on 4,000 human genes at one time. Since the Human Genome Project (to find all the genes of human beings) is expected to find most of the 100,000 human genes by early 1995, the possibility of them being patented was strongly opposed by some governments (France), and in general by scientists. The US applications were later rejected, and the decision was not appealed before the expiry date in early 1994. World-wide, this means that it is not likely anybody can patent large numbers of genes, but they can still patent those which can be used for medical therapy, or if they are modified. The question of balance between incentives for commercial research which can do good in the long run, versus the shared ownership of genes by all, and our shared biological heritage needs further examination - to find where the acceptable limits are (Macer, 1991). We should not forget the parallel with farmer's ownership of plants and animals, in which "life" is owned. The question on patenting revealed negative attitudes to patents on life, especially of human genes (p. 211).
Another issue of ethics is who should make decisions, and who do people trust. A question on the level of trust that people had in authorities who were making a statement about the safety of a product of biotechnology, for example a new drug, revealed differences between countries in who was most trusted (p. 212). There was most trust in the government in Hong Kong and Singapore, and least in Australasia, Japan, Russia, USA and Europe. Despite the lower trust shown in the government in Russia, they had a level of trust in medical doctors. The result is most striking when we compare it to Japan, in which doctors were not trusted. In fact it appears Japanese do not trust anyone very much, but the biggest difference with the other countries was that doctors and university professors were mistrusted, especially so by medical students. Whereas Russians show great trust in doctors and environmental groups, and a high level of trust in professors. Companies were least trusted everywhere. Farmers were also not trusted (unlike the USA, where in 1992, 26% had a lot of trust, 68% had some trust, and 6% had no trust in farmers (Hoban & Kendall, 1992).
The main source of information (Q8, p. 214) was the media in all countries. The newspaper and television were the most cited, with the radio being common in Thailand especially. Magazines and books were common in Thailand and Russia, with education in personal experience also being common there.
The areas of science and technology that were chosen for this survey included several controversial subjects, and this question (Q6, Q7) was modified from one used in Couchman & Fink-Jensen (1990) and Macer (1992), with the request for a reason. The topic of computers (a neutral control subject) and nuclear power were added to the four biological areas, pesticides, in vitro fertilisation, biotechnology and genetic engineering. There are some interesting results in the way people balance benefit and risk (p. 192-198). For example, in Table 6a from in vitro fertilisation, Japanese public see the least benefit in it, and the most people say they have worries, but there are actually less people with "some" or "a lot" of worries than in Australasia. The reasons are also interesting, and the general results can be seen from the wealth of data in the tables. The results confirm people can perceive both benefit and risk, not simply taking up one position.
Some of the most interesting answers came in the two open questions asking what images people had of life and nature. These were analysed by assigning up to two ideas per comment. The diversity of comments was similar in all countries, with similar proportions expressing different ideas - which is very interesting for looking at what we think of nature or life. The back of the book records most of the comments and pictures drawn by the people in all the countries about nature and life.
The question on nature (Q15) followed several questions on genetic engineering, so it is not surprising that many included a comment that nature is something that should not be touched by human beings. The ethical limits of genetic engineering may in the end be decided by perceptions of "nature", however, this is very difficult to define and this survey is an attempt to begin a search among ordinary people around the world on what these limits might be. We all have some limit, whether it be blue roses or chicken with four legs - and we also realise these limits change through time. The tabular results are useful for comparison (p. 215), but a better picture requires a read through the comments (p. 256-325), and looking through the pictures, presented at the end of this book (p. 326-349).
The set questions on environmental concerns (Q2, p. 214) revealed some differences in the actual behaviour of people, that may be more realistic than the idealistic questions of belief in a valuable property of nature (Q1ci). The environmental concern questions were based on those used in Eurobarometer survey 35.0 and Hoban and Kendall (1992).
A simple definition of bioethics, as I said earlier could be love of life. The images of life are therefore most illuminating in the pursuit of bioethics. The images of life were most interesting, and this question is based on a question used in a one question survey in Japan by Morioka (1991). The most common response in all countries was images of life and death. Various other common ideas were found, with some variations which could be due to linguistic differences in the non-English samples. Further analysis will be made, but some comparisons are in Table 27 (p. 215). The open comments are recorded on p. 350-405, with pictures, p. 426-452.
Half of the survey dealt with medical issues. One of the bioethical issues is privacy, something which is becoming more familiar in the age of computer databases. Confidentiality is a consequence of respecting autonomy. There is a growing number of conditions which can be screened for (Macer, 1990). Genes are often involved in disease - both directly causing some, and for others making a person at higher risk of a disease - such as osteoporosis (losing calcium, which is over 75% genetic), many cancers, and the complex mental disorders. The issue becomes more sensitive if discrimination is made. A private health insurer may not want to insure someone at high risk for cancer, or any diseases - the same as an employer who may not want to pay health costs, or lose workers at an early age. Even if we develop regulations to protect people from discrimination, we also need to protect the privacy of sensitive information.
The question "If someone is a carrier of a defective gene or has a genetic disease, who else beside that person deserves to know that information?" (Q21), came from a US survey (March of Dimes, 1992) to allow comparison, and the parallel question "If someone has HIV (the AIDS virus), ..." (Q23) was also asked. Overall, respect for privacy of genetic information was similar between Asians and Australians, differing from those in the USA (p. 207). People in all countries are similarly positive about sharing information with a spouse, with 85-98% saying that a spouse deserved to know if someone was the carrier of a defective gene or had a genetic disease, with 88-98% saying the same for HIV. About 90% of the people in Japan, Singapore, the Philippines or Thailand said that the immediate family deserved to know, more than in Hong Kong (76%), and less in India and Australasia (74%), USA (70%) or India (67%). The difference in the family result may represent attitudes to family involvement in disease and how much disease is seen as a family problem. Both genetic disease and HIV had similar results. A family in all countries may support a sick person, but it is interesting to see where the balance between individuals and families is; which is the basic unit of autonomy.
A difference was that 58% of people in the USA said that insurers deserve to know the information about genetic disease, much more than in the other countries, with Thailand next (51%), than India (44%), followed by Australia, New Zealand, Russia (37-39%). Less people in Japan (18%) and Israel (6%) say the information about genetic disease or HIV should be shared with them. Although there are many bioethicists in the USA, the public apparently does not value privacy as much as in some other countries. Sharing information with employers was rejected most in Australasia and Japan (only 20% agreed), but it was still accepted by a third in most other countries.
Attitudes to disease are central to how much people will want to "treat" someone, or return to "normal". People were also asked whether they knew someone with a genetic disease (Q19) or mental disease (Q24) (p. 210). The most commonly cited genetic diseases were Down's syndrome, and muscular dystrophy. The most common mental diseases cited were schizophrenia and depression. In different countries there were some different perceptions, for example in Thailand many people said diabetes was a genetic disease, while this was not so common in other countries, and in Japan colour blindness. However, the frequency of some of these diseases is similar in different countries, so their familiarity may be due to other associations. The wide variations in number who said they knew someone are generally not related to the actual incidence of disease but is related to perceptions of shame and privacy, as well as perceptions of diseases themselves. The list of diseases is interesting for what diseases are included and what are not.
There were six open questions asking people what they thought of people who had the following diseases: hemophilia, muscular dystrophy, AIDS, depression, schizophrenia and neurosis (p. 208-209). In all samples the most common response was sympathy and compassion. Other responses included people are the same, understanding, or saying "they would help them". In general there was more expression that the diseases were "their own fault" for mental diseases than genetic ones, as well as less understanding. The highest level of rejection was seen for persons with HIV, another common comment being that it depends on how they got it. This is a rather judgemental attitude, as all people make mistakes and AIDS is generally a fatal disease. Singapore and Hong Kong students showed the highest degree of rejection. Only 2% admired people with muscular dystrophy, though for other diseases no one expressed admiration. For mental disease, such as depression, more people considered the diseases their own fault, in all countries. People were more afraid of people with neurosis. Overall there was little difference between any of the samples in their attitudes to people with disease.
The main objective of prenatal screening or diagnosis (also included in the phrase "genetic counseling") is to remove the doubts in the mind of the mother, and to ensure the health of the fetus, and at the moment only 1-5% of fetuses tested are aborted. In fact the screening should be independent of decisions whether to abort or not, as it can result in treatment to aid the fetus.
There was high support for making prenatal genetic screening available under government funded medicine in all countries of the survey, and the USA (OTA, 1987; March of Dimes, 1992). About two thirds said that they would personally use it, and a tenth to a fifth said that they would not. The open comments were varied (p. 206). In the general question on government funding of prenatal genetic tests, 17% (NZ) and 21% (A) included the comment "health care is a right", or "should be available to all". This was similar in Japan, India and Israel, but less in Russia or Thailand said so. 13% (NZ & A) gave economic reasons given like it would "save the country's health care system money". In Japan only 1% gave economic reasons, and it may be that the economic recession in NZ and Australia has forced people to think in terms of saving money - it is also true that if taxes are high people have had to face the fact that taxes are redistribution of wealth according to the ethical principle of justice.
Most other reasons were also given for the personal use of genetic screening, and more people say "don't know" or "it depends on the case", than in the general question. About a fifth said the testing would help the family or parents, and other reasons included a desire to know, the quality of life of the child-to-be, and saving the life of the fetus. Only 1-2% in Japan said the fetus had a right to life; 3-4% in Australia and 4-8% in NZ. There was surprising little objection on religious terms in Thailand. There were very few fears of eugenics expressed anywhere.
Another question in the survey looked at the attitudes to abortion of 4 month old fetuses in general or with congenital abnormalities. In the general case of abortion there was less approval, and teachers and medical students were somewhat less willing. In the case of a 4 month old fetus that has congenital abnormalities", about two thirds or more approved. Australian respondents appear to be slightly more positive about prenatal genetic screening and more willing to abort fetuses with congenital abnormalities than New Zealanders, Japanese or North Americans.
This ethical question is rather independent of sample education, and there is no difference in Japan between public and academics as seen in the data from my survey in 1991 (Macer, 1992). In the Philippines there was support for genetic screening, but rejection of abortion, but in most countries there was not significant religious difference in attitude. The level of personal rejection of genetic screening in the United States was similarly high to in the Philippines, being among the more negative of countries (32% said they would not use, while 53-64% would use; compared to 15-18% against in Australasia and Japan, and 61-69% saying they would use). Education does not seem to be an issue, consistent with results finding no difference in Japan between public, students, high school teachers and academics in my survey in 1991 (Macer, 1992a).
In Asia there is more blame and shame for the birth of a handicapped child than in Western societies. This will be affected by genetic knowledge, but until education reaches more people it will be more than just bad luck in the minds of many Asian families, rather it will include guilt or shame. However, social acceptance of genetic testing is the high in all countries, and the reasons given are rather similar. Not all the reasons are known in these responses to a paper questionnaire, other responses may be the secrets of people's hearts, but the general nature of the comments suggests that it is a reasonable approximate. There is much greater diversity of reasoning within any one country than the differences between any two countries. This survey focused on the public attitude. The public is the user of genetic counseling, and if non-directive counseling is practiced than their attitude will be more important than the attitudes of genetic counselors. The results allow us to form a better picture of the real situation, and on the ideas that people may use in genetic counseling. For comparison, we can look at the international survey of genetic counselors (Wertz and Fletcher, 1989), which looks at the reasons from the medical profession's side.
In this survey eugenic ideas found both positive support (genetic screening), and negative reaction (gene therapy for enhancement). Whether eugenic views of improved genes and health for individuals, a positive view in itself, can be separated from the negative eugenic social forces of conformity, and discrimination against people with disease, is a question only time will truly answer. At the end of 1993, a proposal in China for a "eugenics and health protection" law that would ban the marriage of people with undesirable genes (Editorial, 1994), is another argument supporting the view that economic forces are the major factor in determining the social consequences of genetic testing. The results of a survey in China among medical staff (Lo et al., 1994) suggests that many people will support the concept, though perhaps less would support the compulsory nature of the law. About 10% of the respondents in this survey in Russia, and many in India also, gave eugenic reasons for support of genetic screening, more than in the other countries. If we combine this with the economic reasons, we find Australia, New Zealand and Thailand also have significant support for this idea. We need to ask the question more deeply, where is the line between justice (economy), quality of life (genes), versus accepting what nature or God should bring us for a child? The issue is one that needs sensitive exploration, as in Europe and the USA it already has emotional and political connotations, and genetic screening technology is only just beginning (Macer, 1990)!
Many genetic diseases may be able to be treated by correcting the defective genes, which is called gene therapy. Gene therapy is a therapeutic technique in which a functioning gene is inserted into the cells of a patient to correct an inborn genetic error or to provide a new function to the cell. Over 70 human gene therapy trials have been approved in numerous countries. 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.
The responses to the questions about gene therapy show people do have significant discretion over therapeutic and cosmetic applications of gene therapy (p. 202-203). This is encouraging for ethicists, and a similar discretion was shown in a question about use of genetic engineering to make a sports fish, compared to a disease-resistant crop. There was lower support for enhancement uses (Q28efg - improving physique, intelligence, making more ethical) than for treating disease, suggesting some discretion. There is extremely high support for use of gene therapy to cure disease, both as somatic cell (a - fatal, b - late onset) or inheritable (c - fatal, d - non-fatal); and high support as an AIDS vaccine (Figure 2). There was least discretion against enhancement uses in Thailand and India, which may suggest that the economic strive and infectious disease makes people more pragmatic about the use of any therapy to treat disease. The applications discussed in Q27, Q28c,d,e,f,g are the only examples of technology in the whole survey that are not yet in practice. However, the success of cosmetic surgery suggests that once it is possible the 20-30% who accept genetic engineering to improve intelligence, may do so in practice. Whether this is acceptable is a much bigger question and may require stricter control than today's cosmetics as heritable changes affect future generations.
There is clear support for attempting to do good, and no apparent public rejection of therapy targetted on genes. About three quarters of all samples supported for personal use of gene therapy (Q26), with slightly higher support for children's use of gene therapy (Q27). The major reasons were to save life and increase the quality of life (p. 205). Few people gave a reasons like "improving genes". About 5-7% rejected gene therapy considering it to be playing God, or unnatural. There was very little concern about eugenics (0.5-2%), confirming the results of a different open question in 1991 (Macer, 1992a, b).
Currently such gene therapy is not inheritable, we need to have much wider discussion about the ethics and social impact before we make inheritable changes (Macer, 1990). The need for education is also suggested by the lower familiarity with the word (Q5, p.192), but this is not surprising given the early stage of trials. Non-inheritable (somatic cell) 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 need it. The public around the world agrees.
These results clearly show people do show the ability to balance benefits and risks of science and technology. People around the world do not have a simplistic view of science and technology, and can often perceive both benefits and risks. This is necessary for bioethics, the balancing of good and harm, and I have called this some indicator of the bioethical maturity of a society.
The results provide some data that allows us to actually look at the bioethical decision-making of ordinary people, and to examine the question of universality. This data generally finds most of the total diversity in all samples is found in any one country or group. In every society there are people who want to use new genetic techniques such as prenatal genetic screening, and there are some who reject the concept of selective abortion. The issue goes deeper than religion or culture, and suggests that these issues will always be divided. We should build a society which respects this division of opinion, and offers improved services to those who want to use them - while also providing counseling to help people reach decisions. In all societies we see high support for gene therapy, which also will in the future have the option of enhancement, whether it be for improving the immune system as a vaccine, which may have broad support, or for improving other characters of persons, and their children, with a range of possibilities. These are two examples of new medical technology that will expand as human genome research proceeds.
The most important message of this survey is that people in different countries share very similar views on most of these issues of bioethics associated with genetics. The main difference may be in the acceptance of selective abortion, but even people who said they were very religious also supported this. Any universal ethics must include some respect for informed choices of people, and the range of choices people desire is transcultural. Whether or not policy will reflect that is a matter of hope, but we must be realistic and consider the legacy of our past. If we think about the common origins of human beings, the common goals of families, and their social and religious systems, it should not be so surprising that we find people are similar.
The data that allows us to actually look at the bioethical decision-making of ordinary people, and to examine the question of the universality of responses to genetic disease, and biotechnology. This data finds most of the total diversity in all samples is found in any one country or group. In every society there are people who want to use new genetic techniques such as prenatal genetic screening, and there are some who reject the concept of selective abortion. The main difference may be in the acceptance of selective abortion, but even people saying they were very religious also supported this. In all societies we see high support for gene therapy, or making disease-resistant crops, as could be expected.
We can also draw comparisons between countries based on other surveys, and can mention at least two other surveyed issues in bioethics; euthanasia, including withdrawal of life sustaining treatment and do not resuscitate orders, and organ transplantation. In these issues we also see basic similarity between what are called diverse countries, for example attitudes to brain death and willingness to donate organs after one's death find about half willing, and a fifth to a quarter unwilling, in most countries (Macer, 1992c). The legal and social systems constructed to allow the donation of organs from those who want to are generally existing, with Japan soon to change the law to end its exception to the general. Japanese attitudes are at least as positive towards organ transplantation as Europeans and Americans, despite the opposite view often said.
Another controversial issue is euthanasia, being tested in the Netherlands, with moves to challenge the law in a variety of countries including the USA (see Yesley, in this book). Surveys in different countries find a mixed reaction to this question also, as there has been for 3,000 years of known history. Another issue is the balance between social responsibility and individual health. This may change with economic times, and community solidarity has its extremes in the populations of European descent (USA versus Canada, Europe, Oceania). This health care reform issue is being addressed in many countries, as discussed by Wikler and Tranoy in this book. The health status of people in the countries of the world varies greatly, and this another important determinant of bioethical choices.
Attitudes to people suffering from disease may be affected by the use of genetic screening, but further studies over time will be needed to see whether there are significant attitude trends. In most countries the majority of respondents express sympathy, however, in practice we may not always see such an attitude. This type of study is one approach to address some of these questions. The results are also being used in an attempt to develop a method for assessing the general "bioethical maturity" of different societies, which includes the ability to balance benefit and risk; and discretion between enhancement and therapy; and the balance between autonomy and freedom/restriction.
Any universal ethics must include some respect for informed choices of people, and the range of choices people desire is transcultural. Policy should reflect the universality of diversity and reasoning. The social consequences of biotechnology depend on the society that we make - but they are international. Individuals in different countries share similar attitudes to these questions, but still the social systems around Asia and Oceania are different. Despite the similarity in the views of individuals, the social system in Japan and some other countries is constructed differently, and may not represent the views of the public (Macer, 1992c). However, universal attitudes reviewed in some parts of the International Bioethics Survey, when compared to other international surveys, suggest that we have to reconsider our view that different social systems are the result of differences between peoples, in fact the different social systems may actually be used in attempts to establish differences. Universal bioethics already exists at the level of individual decision-making, and therefore it is certainly possible to develop social and educational systems to allow universal ethics at the higher level of social systems.
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