Darryl Macer, Ph.D.

Institute of Biological Sciences, University of Tsukuba
Tsukuba Science City, Ibaraki 305, JAPAN
Eubios Journal of Asian and International Bioethics 5 (1995), 144-6.

The word "bioethics" was first used in English in 1970 by Potter in environmental ethics and the Hellegers in the medical ethics movement. It is quite common to see people quoting these sources as the origins of bioethics. People also may say bioethics started because of advances in life support systems, reproductive technologies and patient right movements. However, the concepts of bioethics are seen since ancient times in all countries (1).

There are two ways to think of the term bioethics, one is asdescriptive bioethics - the way people view life and their moral interactions and responsibilities with living organisms in life. The other is prescriptive bioethics - to tell others what is good or bad, what principles are most important; or to say something/someone has rights and therefore others have duties to them. Both these concepts have much older roots, which we can trace in religions and cultural patterns that may share some universal ideals. This is especially true when we talk of reproduction and genetics, themes of family, which have been discussed for millenia.

This separation into two types is also not new, rather is based on the English meaning of the word "ethics". For example, the American Heritage Dictionary, gives: "1.a. A set of principles of right conduct. b. A theory or a system of moral values. 2. The study of the general nature of morals and of the specific moral choices to be made by a person; moral philosophy."

"Bioethics" means the study of ethical issues arising from human involvement with life, and I have called it simply the "love of life". Love is a broad term, but includes the concepts of balancing benefits and risks. Love is the desire to do good and the need to avoid doing harm. It includes love of others as oneself, the respecting of autonomy. It also includes the idea of justice, loving others and sharing what we have - distributive justice. It includes love for oneself, love for other people, love for the environment around us, and love for God. These cover all the ideas and concepts of bioethics, and are found in ancient writings around the world - both as descriptions of behaviour and as prescriptions that others have made on the desirable standards of society. Considering that Asia was the origin of most of the major world's religions, we should also expect to see the origins of bioethics in Asia, though the need to make life decisions is a feature of human life every where.

If I am asked to think of the earliest great bioethicist I would say Aristotle. He was both a father of biology and a father of ethics. Maybe because I started also as a biologist I found the fact that he contributed to both fields inspiring. Today we think that interdisciplinary is a trendy word, however, the specialisation of modern science is only very recent. Many of the most familiar scientists were very general in approach. In the past the application of science and technology also raised ethical issues, but like today, not all considered these issues. Only some were aware of the social and ethical issues arising from their work. As we become more familiar of figures in Asia, then we may find similar scholars in the past here too.

One of the common events across all cultures is the birth of a child, and the development of a family. Genetic disease has meant that some people face the trauma of a handicapped child, and genetic variation means that society has to be mixed. When people talk of the "new" genetics, as an example of new technology, they often forget the fact that their ancestors also thought of genetics and having children who would lead a healthy life, otherwise they would not be here (2). There is no inherent clash between genetic technology and ethics, and we should reject the phrase "Genethics" (3) because almost all the issues raised by application of genetics are not novel (4).

We can see early images of genetic disease in the sculptures found in ancient cultures, and the stories. We are all familiar with Mabiki in Japan (where handicapped babies were left to die or killed), something seen in most cultures in the past. The question of how a sick baby should be left to die is one which may be becoming less familiar to modern people in developed countries, actually converse to the idea that genetics is giving us more dilemmas. We luckily can treat more sick patients than we could in the past. Though, it is true that use of life-sustaining technology gives us more questions about when to stop the respirator, and when to stop applying medicine. Sometimes we wonder whether our technology offers us too much. It is also true that new medicines and genetic treatment have the potential to decrease the number of us that die early because of genetic disease, though it means more of us will die of late onset genetic diseases, which could be a new issue.

Another aspect of the new technology that has been a cause for alarm is the increased speed of social change. What is needed is a revival and renewed discussion of ethical values as society interacts with technology. Applications of genetics has been a useful catalyst for this process and the process of review is certainly welcome (2). We can learn lessons for our thinking about life in general. There is a need to look at the ethical issues of any situation, case-by-case. We can save life by better public sanitation or new genetically engineered vaccines.

Selfishness versus Altruism: Autonomy versus Love

The principles of cross-cultural and universal bioethics can considered from both a biological and a social point of view (1). As discussed above, bioethics is the concept of love, balancing benefits and risks of choices and decisions. Its biological, social and spiritual heritage can be seen in all cultures, religions, and in ancient writings from around the world. Decision-making is about making good choices, and choices that we can live with, improving our life and society. The choices that need to be made in the modern biotechnological and genetic age are many, extending from before conception to after death - all of life. The timing of reproduction, contraception, marriage choice, or euthanasia are not new choices, but are always difficult. One of the dilemmas in choices is balancing between autonomy and love.

We could say that the concept of autonomy is based upon selfishness, and the concept of love upon altruism. We can see these concepts in sociobiology and animal behaviour. Love is considered better than selfishness in most religions (e.g. God is love). Love is considered better than selfishness by most people in theory, but not always in our practice. Joseph Fletcher proposed the theory of Situation Ethics in 1966 (5). He said love was the greatest principle in bioethics. He was rewording the Golden Rule, "love others as yourselves", passed down in religion for 3,500 years.

Recently autonomy has been the most valued, over-valued I think, in American bioethics. If we respect the autonomy of human beings we respect their right to have at least some property, and control over their own body. This is international law, and has a good effect in many parts of the world, protecting the weak. Our autonomy should be limited by respect for the autonomy of other individuals in the society. People's well-being should be promoted, and their values and choices respected, but equally, which places limits on the pursuit of individual autonomy. We should give every member in society equal and fair opportunities, this is justice. Society should also include the future of society, future generations are also an essential part of society.

Excessive concern with personal autonomy could be called selfishness, and there is obviously a balance between too little recognition of autonomy which is against the dignity of a person, and too much which can clash with justice. Autonomy should not be the most valuable principle of bioethics, even if it is the most dominant feature of human behaviour (e.g. selfish genes). If it is we arrive at a society with lack of concern for the poor or sick, and some would say the USA is an extreme. Rather we need to balance selfishness with sufficient altruism, to make a true loving society.

ÊHow can we measure individualism? How can we measure the difference between selfishness and altruism? The extreme of individualism is in conflict within the family? But is this behaviour, children independent of the family, really against the family? One test of altruism is whether sisters help brothers because they want the brother's genes (which are their's) to be promoted? To promote your own genes and family is biologically "selfish". This means that a family-centred society may actually be more selfish, if it treats' genetic relations better than non-genetic, family members. To separate from the parents and find new genetic partners is actually helping and promoting the family genes. The test is how much we selectively help family more than non-family. We could say that people's attitude to be more willing to donate their organs to a family member than a non-family member is also "selfish".

We could also look at other behaviour patterns as the test, e.g. shopping choices or taxes. How do people view the money they have? Is it considered their own to spend on themselves, to spend on their family, or their municipality, country or internationally? Some of this decision is made for us by the government and prefectural taxes. What do we do with the extra. Do we buy or rent an expensive house, do we eat expensive food, or do we eat cheaply? How much do we give away? This is another measure. To look at national policy, we could say individualistic countries have lower individual taxes, more privatised education, lack of city planning and utilities, aesthetics, lack of consciousness of noise pollution for others, less concern or love for unknown people, and social harmony.

One way to measure the influence of selfish choices versus altruistic choices in bioethical decision-making is to look at medical practice. Do doctors chose medicine to make money or to save lives? Before we criticise doctors too much we have to ask ourselves, do we chose to do bioethics to make money or to save lifes? A better way to measure the influence of selfish choices versus altruistic choices in bioethical decision-making may be to look at the decisions the patients make? Do they think of other persons? In general no. However, we could look at persons attitudes to the freedom that they give others? To give people more freedom is less individualistic, because you accept the value of other person's choices.

Surveys as a method of descriptive bioethics

There are several ways to observe or describe bioethics. Observations of culture and society are useful, but to avoid the dangers of mixing the descriptive and prescriptive elements of bioethics through the biased interpretation of subjective experiences, random surveys allow somewhat more quantification. Surveys provide another way to look at how people make bioethical decisions, in descriptive bioethics. This background gives us some tools to examine social systems, and people's thinking, needed to study cross-cultural ethics and to consider universal bioethics. We can also say that the ability to balance benefits and risks of choices is some indicator of bioethical maturity of a society (6), and of a person.

There are various survey strategies. The first type is the use of fixed response questions. Recent survey strategies in attempt to look at reasoning more than just statistics which may shed more light on the factors which will affect policy development. There has been attention on qualitative survey approaches to look at factors used in decision-making, which can be useful to identify the range of factors that people use. Ideally they need to be combined with some quantitative measurement to discover which are the most common issues. However, by finding all the issues that people can think of, one can trace out key issues which are behind concerns.

The International Bioethics Survey performed in 1993 in Australia, Hong Kong, India, Israel, Japan, New Zealand, the Philippines, Russia, Singapore and Thailand considered bioethical decision-making, at a descriptive level (1). A basic question of descriptive bioethics is how universal are the bioethics of different people inside every society, and between every society. The topics included attitudes to science; environmental concerns; genetic engineering; privacy, genetic diseases and AIDS; prenatal genetic screening; gene therapy; assisted reproductive technology; and education.

The randomly distributed surveys to public and teachers were sent with stamped return envelopes, and people were asked to respond within each country with no reminders. 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. In total nearly 6000 questionnaires were returned from 10 countries during 1993. Results of the other questions, further background, and more examples of open comments have been published (1).

A few examples of the results are shown in the tables, for genetic screening (Table 1), gene therapy (Table 2), images of life (Table 3), and teaching of bioethical issues (Table 4). The opinion surveys examine the range of opinions and decision-making in bioethics that people have in 10 countries in the Asia-Pacific region. Further international comparisons were made around the world, including with the USA (7), Europe (8), and China (9). In 1995 the survey was conducted in the UK among students. What the data suggests is that the same concerns and hopes are found, that there is similar wide diversity of opinions in all countries, that international approaches do provide insights for policy development at both national and international level, and there is strong need for education and debate about bioethics and genetics (10). Surveys in 1991 in Japan found public, high school teachers and scientists have similar concerns, and in the questions of genetic screening and gene therapy they were almost identical (11).

Surveys are useful for descriptive bioethics, in fact they are one of the most reliable methods if performed and analysed carefully. However, their role in prescriptive bioethics depends upon a number of factors: does the group surveyed represent the population, should the opinions of that group make decisions, can we trust that group whether it be the public, product consumers, scientists, politicians or farmers? Also, there are some principles which may be commonly perceived to be good, but are commonly ignored in daily life, for example, equal human rights, looking after the poor, and respect for the environment. Even the interpretation of surveys is clouded by the fact that leading questions can be used by surveyors who want to make different points.

International approaches to bioethics

The future of bioethics and universality are major issues in bioethics in Asia today. Bioethics networks play a role in our understanding of other people and groups. One of the networks is the (Eubios Ethics Institute and the bimonthly) Eubios Journal of Asian and International Bioethics (EJAIB). EJAIB and many other papers and books are on-line on the Internet (http://www.biol.tsukuba.ac.jp/~macer/EJAIB.html)

Studies of descriptive bioethics suggest there is much in common among cultures, which we could call universal bioethics (1). This includes international law, all human beings have equal rights. The ideals that love is good; and do no harm are common. We should also respect others solely because they have life. Ideally, a love that extends to all beings. Universal cross-cultural ethics should be developed to allow diverse views to be maintained even within a single community, as well as throughout the world in the global community.

The call for international approaches is also based on the shared biological heritage and destiny of human beings in all "nations", and the precedents for international law to protect common interests of humanity. However, the strongest call is based on another fact, that people everywhere live in groups of societies called nations, and these are shown to be microcosms of diversity. The range of the genetic, social and spiritual diversity inside each is as broad as the total of all nations. This is universal bioethics. This descriptive reality of bioethics challenges the prescriptive side - policy and guidelines - to be international

One of the efforts of universal prescriptive bioethics is the work of the UNESCO International Bioethics Committee to develop guidelines and an UN Declaration on the Protection of the Human Genome which attempts to protect humanity from future abuses of human genetics. The draft UNESCO Declaration on Protection of the Human Genome includes 20 articles, and its formal title is "A Declaration on the human genome and its protection in relation to human dignity and human rights" (12). It must be general to obtain the broad support of the United Nations General Assembly. But it encourages national governments to enact laws to protect people against misuse of genetics. It is hoped to celebrate the 50th anniversary of the UN Declaration of Human Rights.

The idea of Genethics may seem to be reinforced by the creation of a special Declaration to look at its bioethics. However, if we look at all of its twenty articles we see them all in previous laws and Declarations. What this Declaration does is to bring them together in focus in one document, to supplement the existing laws, and act as a catalyst to make us remember what bioethics we should have, and how we should treat our fellow person and the world in which we live.

We have been using the word bioethics in these two ways, which does lead to confusion especially in cross-cultural dialogue. When we prescribe bioethics we need to consider not only ethical principles, but the descriptive face of bioethics, to attempt to have bioethics for the people by the people.

References

1. D.R.J. Macer (1994), Bioethics for the People by the People, Eubios Ethics Institute, Christchurch, 1994.
2. D.R.J. Macer, Shaping Genes: Ethics, Law and Science of Using Genetic Technology in Medicine and Agriculture, Eubios Ethics Institute, Christchurch, 1990.
3. D. Suzuki and P. Knudtson, Genethics: The Clash Between the New Genetics and Human Values, Harvard University Press, Boston, 1989.
4. D. Macer, No to "genethics", Nature 365: 102 (1993).
5. Joseph Fletcher, Situation Ethics: The New Morality (London: SCM Press, 1966).
6. D. Macer , Perception of risks and benefits of in vitro fertilization, genetic engineering and biotechnology, Social Science & Medicine 38: 23-33 (1994).
7. U.S. Congress, Office of Technology Assessment, New Developments in Biotechnology, 2: Public Perceptions of Biotechnology - Background Paper. Washington D.C.: U.S.G.P.O. 1987.
8. Eurobarometer Survey 39.1 (and 35.1) is available in French or English from M. Lex, DG XII/E-1 SDME 2/65, Commission of the European Communities, Rue de la Loi 200, B-1049, Brussels, Belgium.
9. W.H.Y. Lo et al., A survey of people with higher education to genetics and diseases in Beijing, pp. 195-198 in N. Fujiki & D.R.J. Macer, eds., Intractable Neurological Disorders, Human Genome Research and Society (Eubios Ethics Institute 1994).
10. D. Macer, et al. International perceptions and approval of gene therapy. Human Gene Therapy6: 791-803 (1995) .
11. D.R.J. Macer , Attitudes to Genetic Engineering: Japanese and International Comparisons, Eubios Ethics Institute, 1992.
12. Reproduced in EJAIB 5 (1995), 97-99; Oct. 1995 revised draft in EJAIB 5 (1995), 150.