Darryl R. J. Macer, Ph.D. Eubios Ethics Institute 1992
The recommendations are not only addressed to the public, scientists, teachers and government in Japan, but many are internationally applicable. A brief discussion of some of the key issues of bioethics, law and policy, that Japan and other countries of the world are facing related to the use of genetic technology, is made throughout these chapters.
There is a lot of genetic engineering research being performed worldwide. Some applications of genetic technology are already being used in daily life. There has been a variety of opinions expressed about different scientific developments, and this is especially true of genetic engineering. Genetic engineering may be perceived as a technology that can bring many benefits, and it is also often perceived as a technology associated with many risks, and people often have both these feelings about it. Despite this public concern, and the obvious importance of genetic engineering and biotechnology for the future of humanity, there have been few opinion surveys which examine the attitudes to genetic engineering.
In light of this, the following survey was embarked upon, to determine attitudes of particular groups of the Japanese public, and to compare these groups with each other, and with international opinion. Comparisons were also made between people working in Tsukuba Science City with other residents of Japan. Questions were mainly taken from other surveys that have been conducted in order to allow international comparisons, though translation from English to Japanese does not always render the same meaning in both languages. There may also be more ambiguity in some questions when in Japanese than there is when the question is in English. To gain additional information, the people completing the questionnaires were encouraged to write comments wherever they wanted on the questionnaire, and in particular for the answers to some questions. These comments provide much useful information for debate about these issues, and are used in addition to information obtained from interviews with individual persons, when discussing these issues. An attempt was made to avoid leading questions, and in several cases similar questions were used to allow internal checks on the consistency of responses during the analysis of results.
Although public opinion can change dramatically in the light of specific events, such as a disaster, or a media announcement of a cure for a disease, the data obtained from a questionnaire can nevertheless be of use for many years to come. This survey provides a background for future studies in Japan, and may allow some assessment of the way that public opinion is changing as technology becomes more closely involved in people's lives. The reasoning behind the questions is included in the discussion of the questions and results. Particular questions are immediately important for education policy, such as the way people receive information, and the teaching of genetic engineering and the social, ethical and environmental issues that arise from it.
The different perceptions by people of different occupations and positions in society is important because decisions regarding the use of technology may be made by committees composed of representatives from only one group of people, which has different attitudes to the general public. Also, it will allow those making such decisions in future, even if they do not open their doors to the public, at least to have more awareness of the opinions of the majority groups of Japanese society, and some of the groups that are likely have the major influence on future development of biotechnology. The representatives and members of several interest groups were spoken to regarding these issues, in order to attempt to understand their views. The results of this report may help people understand the type of reactions to this area of research. It is sincerely hoped that this may assist an increased dialogue about the use and control of the introduction of applications of biotechnology between scientists and the public, and groups concerned about genetic engineering research.
There have been several recent surveys of the progress of Japanese biotechnology research, and the policy decisions behind that (Brock 1989, Nishimura 1988, Schmid 1991). There is little discussion of the public attitudes to biotechnology, which reflects the absence of detailed knowledge about public attitudes. The government and industry has been promoting biotechnology throughout the 1980's, and it has been predicted that by the year 2000, bioindustry will represent 10% financially of the Japanese economy (Y127 trillion) (BIDEC 1986), though 90% of this may be in traditional industries such as fermentation of food and drink. The 1990 sales of products made using recombinant DNA technology in Japan were valued at Y124 billion (Schmid 1991).
There has been some government and industry efforts to promote biotechnology, including the Bioindustry Development Centre (BIDEC), now called the Japan Bioindustry Association (JBA), a private think-tank of the Ministry of International Trade and Industry (MITI). In 1989 the Science and Technology Agency (STA) spent Y30 million on public acceptance of biotechnology, and may have spent three times this amount in 1990. The prefix "bio" has been applied to many new words in common Japanese language, maybe more so than in the language of the public in most other countries. However, by early 1992 there has still only been one field release of a genetically-modified organism (GMO) in Japan, so the agricultural applications of genetic engineering are still at a very early stage internationally. The Ministry of Health and Welfare has just released guidelines to assess applications for foods and food additives made from GMOs (MHW 1992). Overall, despite the efforts to promote biotechnology, there appear to be some bottlenecks caused by strict or bureaucratic regulations.
The public acceptance of biotechnology in Japan is claimed to be good, but one could challenge this observation even before this current study commences, especially with regard to genetic engineering. In the most recent review of biotechnology in Japan, Schmid (1991, p.615) claims that public acceptance of biotechnology is high, "reflecting a high level of education and information within Japanese society, and the specific way of reaching decisions, which usually involve lengthy discussions with all groups". If one asked the public if they had been involved in the decisions associated with the promotion of biotechnology, it is very doubtful if almost anyone would say that they had been involved. Decision-making in Japan tends to exclude the public, and biotechnology is no exception. The observation that the public strongly supports biotechnology is not to be conclusively found in any of the published "public" opinion surveys, and some findings of these surveys are discussed in this report in light of the new results.
We need to think about ethics. Ethics is about decision making. There are large and small problems in ethics. We can think of problems that involve the whole world, and problems which involve a single person. Although all people should think of ethics and its implications for their lifestyle, government action is also needed. We could think that global problems such as global warming and ozone depletion may overshadow all others. This problem however, can only be solved by individual action, to reduce energy use. You could do this by turning off lights, turning down heaters and airconditioners, building more energy efficient buildings, shutting doors, and driving with a light foot. These are all simple actions which everyone must do if we are concerned about our planet, yet we can notice so many doors left open, air conditioners used unnecessarily, so many lights used and huge wastage of energy. In Japan, it is very common to see empty parked cars with the engines still running! It is as if people do not care about our planet at all.
We need to ask why we need ethics, and what factors are crucial for guiding decision-making. Any moral choice involves ethical decision making. Those type of decisions are ones that everyone makes, though many may ignore the alternative actions. Medical ethics involves more decision making, but on a personal level, it concerns the patient and the health care professional, especially the physician. Similar to the above example, action relies on personal decisions. For example, the health care professional needs to change their dominating role and the patient should no longer be submissive like the Japanese saying that a patient is like a fish on the chopping block. A few other people are indirectly affected, such as the family and competing patients who also need medical attention. At a further level away may be many others who will be indirectly affected by such questions as the cost of very expensive treatment that takes funds away from other patients. At this level higher policy-making is required, as in the case of pollution.
Decisions may be made democratically in a country if a consensus supports them, if the rights of minority groups are not overtroden, and if it makes sense in the long term, both nationally and internationally. However, not all decisions made this way will be ethical, society can make unethical majority decisions and will continue to do so. In the area of biology and genetics, we should never forget the unethical compulsory eugenics that swept the world in the first half of this century, when more than 40 countries made laws to enforce mandatory sterilisation and selective immigration policies (Kelves 1985), nor should we forget the environmental destruction that still continues today. We cannot say that these abuses are always based on ignorance, rather they are sustained by groups of people pursuing their own interests who can lead the public into following the pattern of living that will sustain the people in power in those positions. Usually appeals are made to the selfish side of human personality, that we all possess. Rather, we should be concerned with global sustainability and protection of the rights of all people. There are some key principles of ethics which are briefly outlined below, and we should balance the implications that arise from each principle to arrive at more ethical decisions.
All people are different. This is easy to see, if we look at our faces, sizes and the clothes that we chose to wear. This is also true of the choices that we make. We may decide to play tennis, or golf, or chess, read a book, or watch television. These are all personal choices. We may be put under some pressure by the people around us to engage ourselves in a particular activity, or to behave in a certain way, but ultimately it is our choice. In a democratic society we recognise that we have a duty to let people make their own choices. This is also expressed in the language of rights, by recognising the right of individuals to make choices. Respect for the autonomy of individuals is the fundamental principle of bioethics (Veatch 1981).
There are several types of rights (Annas 1989): legal rights are claims that would be currently backed by the law if the case went to court; probable legal rights would be likely to be backed by the law if the case went to court; human rights are critical to maintaining human dignity but may not have yet attained legal recognition.
Rights give us dignity and protection. If we have a right to something we can insist on it without embarrassment or fear, though to challenge those in authority in many countries, including Japan can result in fear. Above the challenges of new technologies, and increasing knowledge, the challenge of respecting people as equal persons with their own set of values is a challenge for all. Respect for personal rights should change the nature of relationships between people in power and people without power from being characterised by authoritarianism or paternalism to becoming a partnership.
The recognition of human rights has changed the shape of many countries, and many countries in the world have signed the U.N. Declaration of Human Rights (Sieghart 1985), or one of the regional versions of this. This can be applied to many situations, for example, we all have a right to be involved in decisions about our country, the freedom of religion, or speech, to raise a family, to share in the benefits arising from scientific advances, and a right to a reasonable future. In medicine, this is especially important in an age when modern technology is increasingly used in medicine, which can distance the patient from the human side of the healing process. The recognition of human rights can humanise the clinical and hospital environment, and is desirable even if it was not a right. When a patient enters a hospital they do not give up their human rights. Rights are important in almost everywhere that we live.
In Japan, the rights of people are laid out in the constitution to be those of basic human rights (Japan 1947). The right of people to life, liberty, and the pursuit of happiness, to the extent that it does not interfere with public welfare, should be the supreme consideration of the law and government (article 13). In article 14, equality in law, politics, economics and social relations is legally stated for people of different race, creed, sex, social status or family origin. Article 19 states that, freedom of thought and conscience shall not be violated; in article 20, freedom of religion is guaranteed; in article 21, freedom of assembly and speech; and in article 23, academic freedom is guaranteed. What is stated in the law in a constitution is not always what is found in practice, and the law certainly does not make it easy to make all decisions.
Ethics is not the same as law. Ethics is a higher pursuit, doing more than the law requires. The law is needed to protect people and to set a minimum standard, but you can not determine good moral behaviour by settling cases in a court of law. Look at the extremes of medical malpractice in Japan patient's claims are not respected or fairly judged, while in the USA a court can award a person exceptionally high sums of money, well beyond what is fair. The medical staff becomes terrified of lawyers, and the costs of legal aid insurance is ever increasing. No one wants this sort of system of the doctor-patient relationship. There is only one long term solution. That is, good doctors, who respect patient's autonomy. Doctors who a patient can trust while maintaining their own values as a human being. We can also think of environmental damage, which can also not be compensated by monetary reimbursement. The solution is to have more moral companies and politicians, and the replacement of money by ethics, as the primary motive of decision-making.
One of the underlying philosophical ideas of society is to pursue progress. The most cited justification for this is the pursuit of improved medicines and health. It has often been assumed that it is better to attempt to do good than to try not to do harm. A failure to attempt to do good, working for the people's best interests, is taken to be a form of doing harm, a sin of omission. This is the principle of beneficence. This is a powerful impetus for further research into ways of improving health and agriculture.
The term beneficence suggests more than actions of mercy, for which charity would be a better term. The principle of beneficence asserts an obligation to help others further their important and legitimate interests. It means that if you see someone drowning, providing you can swim, you have to try to help them by jumping in the water with them. It also includes the weighing of risks, to avoid doing harm. We will look at how people weigh benefits of technology against the risks, in chapters 3 and 4.
Do no harm
The laws of society generally attempt to penalise people who do harm, even if the motive was to do good. There needs to be a balance between these two. This balancing is very relevant to areas of science and technology, where we can expect benefits and risks. There will be different types of risk. For example, nuclear power is sometimes portrayed as a very risky method of generating power, because of the chance (even if low) of a major event, worse than Chernobyl. Yet, the current alternative for industrial-scale power generation is burning fossil fuels, such as coal. There are many more people killed mining coal than because of nuclear power stations, but because the direct human risk is of a relatively low magnitude, even if accidents have a high frequency, we may not perceive of this as risky. In the last two decades we have become aware of the indirect risks of using fossil fuels, and the consequences of global warming will far outweigh the harm done directly to coal miners, or oil and gas rig workers. We must balance risks versus benefits of different and often alternative technologies, and take these comparisons into our daily lives and behaviour, as well as when determining government policy.
In medicine there is a very long history of the principle of avoiding harm. The duty of the physician to do what they think benefits the patient or to keep them from harm is stated twice in the Hippocratic Oath (written about 400BC) and in other traditions. Actually the maxim often claimed to be from the Hippocratic Oath, "primum non nocere", or "at least, do no harm," is not to be found in the Hippocratic Corpus, its origin is unknown. The principle can be formulated in several ways. The Hippocratic Oath states "but I will never use it to injure or wrong them [patients]", the idea is that medicine is a moral enterprise and the knowledge should only be used for healing. Medical knowledge is very powerful and privileged and should only be used to help, not for malevolent purposes. This idea is certainly found in the Hippocratic Oath, and has been part of the Hippocratic tradition. The second version of this idea is in the Hippocratic work Epidemics, which states "to do no harm," which is a directive to take due care when treating disease. The famous physician of the second century, Galen, rephrases this maxim "the physician must aim above all at helping the sick; if he cannot, he should not harm them,". This third version puts the emphasis on the helping motive, the reverse of the latin maxim. While we need to balance the risk-benefit ratio, at least we should try to do good. The fourth version, the Latin maxim "primum non nocere," is on the cautious side, maybe more appropriate to ancient medicine which often resulted in worse symptoms than the injury, but also useful today. If harm is going to come to the patient, there must be some compensating benefit.
This is a very broad term, but is the basis for the principles of justice and confidentiality, and philantropy. It can also be expressed as respect for human life and integrity. The reason we do no harm is because we respect human life. This feature is found in the Hippocratic tradition and all other traditions of medical ethics. It is also found in ethics in general. To do no harm is expressed more at an individual level, whereas justice is the expression of this concept at a societal level. This idea has been called the principle of nonmaleficence. We can apply this to technology application in general.
Those who claim that individual autonomy comes above societal interests need to remember that at major part of protecting society is because it involves many human lives, which must all be respected. Individual freedom is limited by respect for the autonomy of all other individuals in the society and world. People's well-being should be promoted, and their values and choice respected, but equally, which places limits on the pursuit of individual autonomy. We also need to consider interests of future generations which places limits on this generation's autonomy. We also need to apply this principle globally, no single country should pursue policies which harm people of any country.
The key principle arising from the high value of human life is respect for autonomy of each individual human being. This means they should have the freedom to decide major issues regarding their life, and is behind the idea of human rights. This idea is found in many religions also. Part of autonomy is some freedom to decide what to do, as long as it does not harm others, also called individual liberty or privacy. Well-being includes the principle of "do no harm" to people, and to work for people's best interests.
The emphasis on confidentiality is very important. Personal information should be private. There may be some exceptions when criminal activity is involved or when third parties are at direct risk of avoidable harm. It is very difficult to develop good criteria for exceptions, and they will remain rare. There must be care in the reporting also, so that it is not widely spread. We must be careful, because we use computer databanks that contain such information, and if they can not be kept confidential, the information should not be entered to such a bank.
A feature of the ethical use of new genetics is the privacy of genetic information. This is one of the residual features of the existing medical tradition that needs to be maintained. It is not only because of respect for people's autonomy, if that is not enough. It is also needed to retain trust with people. If we break a person's confidences, then we can not be trusted. It applies to all aspects of life. We need to protect individuals from discrimination that may come in an imperfect world, one that does not hold justice as its pinnacle.
An extension of confidentiality is privacy, the right to refuse questions. If medical insurance companies try to take only low risk clients by prescreening the applicants, there should be the right to refuse such questions. The only way to ensure proper and just health care is to enforce this on insurance companies, or what is a better solution, a national health care system allowing all access to free and equal medical treatment.
These above principles apply to human interactions with other humans. However, we also interact with animals, and the environment. The issue of the use of animals in research has not been a very controversial issue in Japan, unlike Western countries. Animals are being used for genetic engineering, for use as models of human disease, for use in the production of useful substances such as proteins for medical use, and in the more traditional uses in agriculture. Some of these uses, such as the production of mutations in strains of animal to study human disease will have human benefit, but are more ethically challenging because some of these strains may feel pain (Macer 1990).
The moral status of animals, and decisions about whether it is ethical for humans to use them, depends on several key attributes; the ability to think, the ability to be aware of family members, the ability to feel pain (at different levels), and the state of being alive. If we believe that we evolved from animals we should think that some of the attributes that we believe humans have, which confer moral value on humans, may also be present in some animals (Rachels 1990). Although we cannot draw black and white lines, we could say that because some primates or whales and dolphins appear to possess similar brain features, similar family behaviour and grief over the loss of family members to humans, they possess higher moral status than animals that do not exhibit these. Therefore, if we can achieve the same end by using animals that are more "primitive" than these, such as other mammals, or animals more primitive than mammals, then we should use the animals at the lowest evolutionary level suitable for such experiment, or for food production (which is by far the greatest use of animals). Additionally, as all will recognise, inflicting pain is bad (Singer 1976), so if we do use animals we should avoid pain. If we take this line of reasoning further, we conclude that we should use animal cells rather than whole animals, or use plants or microorganisms for experiments, or for testing the safety of food. This reasoning, is also reflected in public opinion presented in chapter 4.
Humans also have interactions with the environment, and in fact depend upon the health of the environment for life. The easiest way to argue for the protection of the environment is to appeal to the human dependence upon it. There are also human benefits that come from products we find in nature, from a variety of species we obtain food, clothing, housing, fuel and medicine. The variety of uses also supports the preservation of the diversity of living organisms, biodiversity. As we have learnt, the ecosystem is delicately balanced, and the danger of introducing new organisms into the environment that will upset this balance is another key issue raised by genetic engineering. However, we have been using agricultural selection for 10,000 years, so the introduction and selection of improved and useful plants and animals is nothing new! This will be examined in chapter 4.
The above arguments should convince people of the value of the environment, and that is a first stage. However, it appeals to our sense of values based on human utility. There is a further way to argue for the protection of nature and the environment, and it is a more worthy paradigm. It is that nature has value for itself because, it is there. We should not damage other species, unless it is absolutely necessary for the survival of human beings (not the luxury of human life). Nature has life, thus it has some value. Another paradigm for looking at the world is a religious view, that God made the world so the world has value, and we are stewards of the planet, not owners. This paradigm can make people live in a better way than if they look at the world only with the paradigm of human benefit.
To anyone who starts to try to use these principles in their daily life, it will very soon be apparent that there needs to be a balancing of conflicting principles of ethics. Different people's interests will conflict, so that there are exceptions to the maintenance of privacy and confidentiality. How do we balance protecting one person's autonomy with the principle of justice, that is protecting all people's autonomy. In this regard utilitarianism, that we should attempt to produce the most happiness and benefit, will always have some place, though it is very difficult to assign values to different people's interests and preferences.
Many medical and scientific procedures are challenging because they involve technology with which both benefits and risks are associated, and will always be associated. Human beings are challenged to make ethical decisions, and to balance the benefits and risks of alternatives, they have to. The benefits are great, but there are many possible risks. Although our life may have become easy, so that we avoid making very many decisions, we must. The more possibilities that we have, the more decisions that we make. Fortunately standards of education are increasing, but this is no guarantee that the right decisions will be made. People need to be taught more about how to make decisions, and the education system should accommodate this need of modern life.
It is now time to look at what people say about biotechnology and genetic engineering. Both techniques will provide many benefits, but there are also many risks. It is also unclear who will really benefit the most. It is important to see these benefits and risks in an international way, because the world is becoming smaller and ever more interdependent. Biotechnology will affect the lives of people throughout the world. All people of the world can benefit if it is used well, through medicines, and more environmentally sustainable agriculture. However, biotechnological inventions that allow industrialised countries to become self-sufficient in many products will change the international trade balances and prosperity of people in developing and industrialised countries. If developing countries cannot export products because of product substitution the result may be political instability and war. This may in the end become the biggest risk. We need to remember national and international issues. Although we will continue to enjoy the many benefits to humanity, and we may hope for environmental benefits, the price of the new technology is that it may make us think about our decisions more than in the past. This is long overdue!
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