Editors: Norio Fujiki, M.D. & Darryl R.J. Macer, Ph.D.
Foreign Professor, Institute of Biological Sciences, University of Tsukuba, JAPAN
According to Polynesian legend, New Zealand was settled in 1350 by a great migration from Hawaiki by the ancestors of the Maori population. The exact date is unknown but it was certainly long before the arrival of Europeans. Colonization began in the 1800s, and in 1840 the Treaty of Waitangi was signed. British sovereignty was proclaimed in return for recognition of equal rights of the indigenous people. The English version and Maori versions were a little different, and it has been a source of confusion. The governorship of the country was given to England, but the chieftainship of the land to the Maori tribes (about 500 chiefs signed the treaty). This was the beginning of a mixed country, and the application of the treaty principles in the last decade has seen growing chieftainship being given back to Maori tribes, for example half of the fishing industry has been given to the Maori population.
For distribution of health care there is little difference between the Maori and non-Maori values, a socialist view that medicine should be accessible to all. Only for particular issues, such as disposal of dead bodies, values of work, life and disease there may be differences. However, it is rather symbolic that there is said to be almost no pure Maori left in the world, all are mixed, and so are the values of members of any group in New Zealand. About 10% claim some Maori blood, but 90% would claim some of the Maori heritage as their tradition, and be proud of it.
New Zealand has been a world leader in social welfare. In 1893, 100 years ago, it became the first country in the world to give women the right to vote, one vote per person, the same as men. In 1898 the world's first Old Age Pensions Act was passed, providing an old age pension to the elderly. In 1938 a Social Security Act was passed, a socialist health and welfare system. In 1946 a universal family benefit of £1 a week was introduced, for all children. In 1974 a no-fault accident compensation scheme was introduced - to provide fair and reasonable compensation to every accident victim, regardless of the fault. The philosophy is, that the whole community accepts responsibility for the accidents which inevitably afflict a proportion of its members. This is an extension of the health for all policy of 1938 - in which the community accepts responsibility for all accidents of genes or disease. The accident compensation scheme superseded legal rights previously held by citizens to sue through the courts for accidents that were the result of negligence, but it provides rapid compensation to all, reducing the need for lawyers.
A current trend of reducing costs is challenging the assumptions of the period starting from 1898 when many innovative ideas in social welfare were tested and accepted in New Zealand. In 1938 the Social Security Act was passed when people thought it was ethical to redistribute income to ensure that none of its members were without basic necessities of life. New Zealand has tried to be a classless society, and from the 1940s until the 1970s it had one of the highest living standards in the world, and was also rather classless. I was still surprised when I visited the USA in 1974 as a child to see the vast differences in class between different people in the same country, or city. Both are former British colonies, but have reached different, and in some aspects, opposing, views of common morality for social responsibility.
In 1990 New Zealand abolished the family benefit, in 1992 the accident compensation scheme was modified to make coverage more restrictive, and in 1992 the medical system was altered to a user-pays idea, with issuing of special benefits cards for low earners. Also in 1992 a Bill of Rights was passed, guaranteeing all people many rights, incidentally also the right to refuse medical treatment, so that life-sustaining treatment against the wishes of a patient is legally a crime. A National Advisory Committee on Core Health and Disability Services has released a discussion document in 1993 to look at the distribution of health care (1). It asked the public the questions: "What are the benefits?", "Is it value for money?", "Is it fair?", and "Is it consistent with the community's values and priorities?". The answers to these questions will affect the future social consequences of genetic testing. They have said, they will not make a list of certain conditions that receive public support and others which do not, as in the priority lists of Oregon in the USA.
The introduction of a user-pays system has not been publicly supported. In 1989, 63% of people agreed that "Medical care should be available free-of-charge to those who need it", while 25% disagreed, and 10% were neutral; while 53% disagreed the "Medical care should be on a 'user pays' basis", 32% agreed and 12% were neutral (2). On the question "I would be prepared to pay a little more in taxes if public hospitals could be improved", 41% agreed and 42% disagreed. Therefore, the socialist ideals seem to be retained in New Zealand. In education also, handicapped children are usually integrated, at least for part of their week, into ordinary schools. No country is ideal, but the current social values suggest people with disease in New Zealand continue to be supported by the community more than in many other countries.
Australia has an older history of colonization, by both its indigenous Aborigines and recent Europeans and Asians. The Aborigines were migratory in society and life, whereas the New Zealand Maoris were village-based, thus it is not surprising that the race situation in New Zealand is generally much better than in Australia, in the modern life-style. However, Australia has also generally followed a socialist view of human responsibility and community solidarity. It has a social welfare system, and a Medicare system. In 1992 Australian courts recognised the claims of Aboriginal people, as original inhabitants, to Australian land, which may have broader consequences in social attitudes. There are some racial differences in incidence of genetic disease, for example, Aborigines have a high incidence of colour blindness. Given the claims of racial discrimination, the use of genetic testing for more serious conditions has to be careful to avoid any future claims of racial abuse.
At an individual level Australians are more like Americans, while New Zealanders are more like Europeans. Australia and New Zealand are collectively called Australasia, and are the main countries of Oceania, and are the closest countries in the world to each other in culture, despite Australia being more than 10 times closer to Indonesia than New Zealand.
It is therefore not surprising that the opinions expressed in the International Bioethics Survey conducted in 1993 are similar (3). Opinion surveys including questions about genetic testing, genetic and mental disease were conducted among the public, high school teachers, and medical students in Australia, New Zealand, Japan and other Asian countries, as are considered in following papers by Macer & Kato, and Kaushik. The surveys from India and Thailand are not finished yet, at the time that this went to press, and neither is the sample of medical students from the United States. Some of the basic characteristics of the samples are in Table 1, but reference to the complete survey results should be made to the book Bioethics for the People by the People (3).
The public surveys were obtained by random nation-wide samples, relying on mail response with no reminders. The student samples, except in Hong Kong and Singapore, were from selected medical schools and numerous collaborators were involved, as explained in Macer & Kato in this book (p. 203), or (3). These surveys included open response questions, and were designed to reveal some of the factors which people use to make decisions. The samples from New Zealand, Australia and Japan were representative of the general population, while the samples from India, Thailand and Israel had higher education than the general population.
In New Zealand and Australia just less than half the people said that they knew someone with a genetic disease, but only 30% and 40%, respectively, said that they knew someone with a mental disease, significantly less than the 68% of Japanese respondents. This trend was also seen in medical students. More discussion of attitudes to disease follows (Macer & Kato, p. 205-207).
Privacy of Genetic Information
Respect for privacy of genetic information was similar between Asians and Australians, differing from those in the USA, as shown in Table 2. People in all countries are similarly positive about sharing information with a spouse. People in Japan or the Philippines may share information more with the immediate family than in Singapore, Thailand or Hong Kong, and less in India and Australasia or the USA. People in the USA say that employers or insurers deserve to know the information about genetic disease much more than in the other countries. Less people in Japan and Israel say the information about genetic disease or HIV should be shared with them.
Does this mean the social consequences of genetic testing will be different? I think the difference in the family result may represent attitudes to family involvement, and if disease is seen more as a family problem. Both genetic disease and HIV had similar results. A family in all countries may support a sick person. More important for society is sharing information with insurers and employers. In the USA surprisingly, many people agreed that an employer or insurer deserved to know the information. This suggests that they may accept insurers altering costs based on genetic risk (as long as it is not them!), a lack of community solidarity for the sick. Life insurance companies in Australasia may refuse cover for families with genetic disease, but fortunately medical insurance is not necessary to receive medical care.
|How important is religion?|
|Not at all||20||26||17||-||18||2||24||12||34||20||45||22||0.4||0||5||13||30||22||16||17||23||17|
1%=response rate of the survey;
2Time that sampling started.
3Indian samples were divided into city, town and rural responses; Russian samples were from three cities, both are described in the analysis of the results for the respective samples.
4Income for NZ, A, Is, S, P in $; Japanese
Yen, (Y500,000; 800,000; 1,000,000; Russian in rbl; T in bahts
(125,000; 250,000; 500,000); In in rupees.
Abbreviations used in all tables: NZ=New Zealand; A=Australia;J=Japan;
J91 from Japan 1991 survey (Macer, 1992);
P=Philippines; S=Singapore; HK=Hong Kong; T=Thailand; R=Russia.
Other surveys that are compared in data tables include: NZ90 (Couchman & Fink-Jensen 1990, N=2034); US86 (from the Office of Technology Assessment Survey 1986, N=1273); US92 (from March of Dimes Survey 1992, N=1032).
|If someone is a carrier of a defective gene or has a genetic disease, who else besides that person deserves to know that information?
|Spouse or fiance|
|Other immediate family|
If someone has HIV (the AIDS AIDS virus), who else besides that person deserves to know that information?
|Spouse or fiance|
|Other immediate family|
Genetic testing provides genetic information. Approval of prenatal genetic testing is high in all countries surveyed, as seen in the results of the survey, in Table 3. In New Zealand and Australia there was about 80% support for making prenatal genetic screening available under government funded medicine, and about 70% said that they would personally use it. 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. There is no difference in Japan between public and academics as seen in the data from my survey in 1991 (4). In the Philippines there was support for genetic screening, but rejection of abortion, as shown in Table 4. In New Zealand and Australia maternity services are mostly publicly funded, with some private hospital services also available. In Australia there may be more individual charges for mothers. Birth, and abortion for fetal handicap, are covered by public health, whereas in Japan these services are not generally covered.
According to an ethical tradition seen in the President's Commission on Genetic Testing in the USA, testing should be done only if it helps the individual. Prenatal genetic screening is a special case, the information may not always benefit the fetus though it may benefit the family. Genetic testing of individuals to identify risk factors can lead to lifestyle change which is a benefit. If there is a national social welfare system providing equal health opportunities to all people, and more services to those who need it, and a supportive educational and social environment, there may well be few direct social consequences of increased genetic testing.
The major reasons cited in the open questions for and against genetic testing are revealing, and are shown in Table 5. Major reasons in the open comments given in all countries were similar, but in Japan there was less economic reasons given like it would "save the country's health care system money". People in Japan may not think deeply about the economic costs of health care, and it will be interesting to see whether this attitude changes as a result of the recession and of the growing health costs and aging population. It may be that the economic recession in New Zealand 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, taxes are redistribution of wealth according to the ethical principle of justice. Economic hard times will force cuts in medical services, as will an aging population; these may be a stronger social force to change attitudes to the sick than genetic testing. It was the force that has changed government policy in New Zealand, though people are still behind social welfare, and it remains to be proven whether recession makes people think more economically. Although public comments are called for in New Zealand, the government may still implement policy without popular support. In Australia the government is more sensitive to public opinion, while also requesting it. In some Asian countries public opinion is not requested.
Table 3; Table 5: Reasons cited in open questions for genetic screening
Some genetic diseases can be predicted in the fetus during the early stages of pregnancy. Do you think such tests should be available under government-funded Medicare? Why? Yes No Don't know
In US it did not say funded
|Improve quality of life||8.1||7.7||2.9||1.5||13.4||5.0||0||2.2||9.1||0.9||3.5||9.1||0||2.4||0|
|Depends on case||5.6||7.7||3.5||2.5||0.7||2.0||6||13.7||4.5||1.6||0.3||1.7||4.5||0.4||1.0|
|Health care is a right||16.8||21.4||12.7||17.2||10.7||4.1||14||8.4||10.9||19.8||18.9||21.3||16.6||15.3||24.0|
|Fetus right to life||4.3||3.1||2.1||0.8||0||0||2||14.7||7.3||1.2||1.6||0||3.8||2.0||1.9|
Would you want such a test during (your/your spouse's) pregnancy? Why?
|Improve quality of life||6.9||3.5||3.6||2.2||6.5||2.7||0||2.1||8.2||0.9||3.6||6.5||0||2.4||0|
|Depends on case||13.5||14.3||4.5||8.8||2.1||0.9||6||14.7||9.1||6.4||3.6||2.2||7.7||1.6||9.6|
|Health care is a right||0||0||1.8||0.2||3.4||3.2||2||0||0||4.5||0.3||12.6||0||0||0|
|Fetus right to life||7.5||4.1||0.9||0.8||1.0||0||2||17.9||7.3||1.9||1.6||1.7||5.1||3.6||1.0|
"Parent's life" includes those who said abortion was acceptable; "To know" includes those who only said they would want to see, but they did not indicate in this question they would have an abortion. "Other benefit" includes those who gave personal reasons.
To what extent do you agree or disagree with the following statements?
++ Agree Strongly + Agree = Neither - Disagree -- Disagree Strongly
f. A woman can abort a 4 month old fetus.
g. A woman can abort a 4 month old fetus that has congenital abnormalities.
Social acceptance of genetic testing is the high in all countries, and the reasons given are rather similar, but not all the reasons are known in these responses to a paper questionnaire, other responses may be the secrets of people's hearts. The reasoning is similar, and there is much greater diversity of reasoning in any one country than the differences between any two countries. This survey focused on the public attitude, and also general student 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. There have been two international surveys of the attitudes of genetic counselors, conducted by Wertz and Fletcher, the earlier one of which has been published (6). The results of all these surveys allow us to form a better picture of the real situation, and on the ideas that people may use in genetic counseling.
Some people in Japan claim that abortion of handicapped fetuses will increase discrimination of those who have genetic disease or a handicap? I think no, because: 1) Many people will still be disabled by accidents after birth, not by genetic accidents; 2) If the mother has free choice about 10-20% in any country will not abort even for a severe disease; 3) Deciding that abortion is the best of several hard choices is difficult, and the personal experience may make people more understanding of the condition. Intensive treatment to prolong life is "Playing God", so is abortion for reasons of fetal disease. Many human activities could be called "Playing God", including treatment of disease by any method.
From other questions in the survey, we can see that people do show the ability to balance benefits and risks of science and technology (3, 4, 7). People 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 (7).
The question about gene therapy shows people do have significant discretion over therapeutic and cosmetic applications of gene therapy. 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 (3, 4). In the gene therapy case shown in Table 6 there are 8 questions. There is extremely high support for use of gene therapy to cure disease, both as somatic cell (a,b) or germ-line (c,d); and high support as an AIDS vaccine (h). There is rejection of enhancement genetic engineering (e,f,g). This is seen in all samples. This supports earlier results suggesting wide support for gene therapy (4, 8).
Q28. How do you feel about scientists changing the genetic makeup of human cells to:
++ Strongly Approve + Somewhat Approve - Somewhat Disapprove - - Strongly Disapprove DK Don't know *UK sample from 1994, see text.
|Medical or biology students||High school teachers|
|a. Cure a usually fatal disease, such as cancer|
|b. Reduce the risk of developing a fatal disease later in life|
|c. Prevent children from inheriting a usually fatal disease|
|d. Prevent children from inheriting a non-fatal disease, such as diabetesdiabetes|
|e. Improve the physical characteristics that children would inherit|
|f. Improve the intelligence level that children would inherit|
|g. Make people more ethical|
|h. As an AIDS vaccine|
In conclusion we could say that the social consequences depend on the society that we make. Individuals in different countries share similar attitudes to these questions, but already the social systems in 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 (9). This difference is not surprising, for the health care system in the USA and Canada, bordering countries, represents much of the world extreme in social health policies. However, universal attitudes reviewed in some parts of the International Bioethics Survey (3), 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 occasionally be used in attempts to establish differences.
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 (10), is another argument supporting the view that economic forces are the major factor in determining the social consequences of genetic testing. The paper in this Seminar by Lo suggests that many people will support the concept, though perhaps less would support the compulsory nature of the law. There is hope from the social history of two sporting nations in Oceania that a society that values vigour on a sports field, or vigour in academia, can also value weakness, and in that recognition they become socially strong. The ethical and religious strength of the "law of Community" may continue to defeat the "law of the Jungle".
1. National Advisory Committee on Core Health and Disability Support Services, The Best of Health 2 (Wellington, N.Z.: Core Health Services Committee, P.O. Box 5013, Wellington, New Zealand, 1993).
2. Chetwynd, S.J. (1989) New Zealanders' attitude to health care policy. Community Health Studies 13: 186.
3. Macer, D.R.J. Bioethics for the People by the People (Christchurch, N.Z.: Eubios Ethics Institute 1994).
4. Macer, D.R.J. Attitudes to Genetic Engineering: Japanese and International Comparisons (Christchurch: Eubios Ethics Institute 1992).
5. Kawashima, H. pp. 145-6 in Fujiki, N. & Macer, D.R.J., eds., Human Genome Research and Society (Christchurch: Eubios Ethics Institute 1992).
6. Wertz, D., & Fletcher, J.C., (eds) Ethics and Human Genetics. A cross cultural perspective (Berlin: Springer 1989).
7. Macer, D.R.J. (1993) Perception of risks and benefits of in vitro fertilization, genetic engineering and biotechnology. Social Science and Medicine 38: 23-33.
8. Macer, D.R.J. (1992) Public acceptance of human gene therapy and perceptions of human genetic manipulation. Human Gene Therapy 3: 511-8.
9. Macer, D. (1992) The 'far east' of biological ethics. Nature 359: 770.
10. Editorial, (1994) China's misconception of eugenics. Nature 367: 1-2, 3.
Statistical Note: The word "significant" when used in this paper means it was significant at least at P < 0.05.