pp. 110-118 in Intractable Neurological Disorders, Human Genome Research and Society.

Proceedings of the Third International Bioethics Seminar in Fukui, 19-21 November, 1993.

Editors: Norio Fujiki, M.D. & Darryl R.J. Macer, Ph.D.


Copyright 1994, Eubios Ethics Institute All commercial rights reserved. This publication may be reproduced for limited educational or academic use, however please enquire with Eubios Ethics Institute.

Social acceptance and consequences of genetic testing in Australasia and Asia

Darryl Macer
Foreign Professor, Institute of Biological Sciences, University of Tsukuba, JAPAN


Australia and New Zealand are new countries with a mixed population, mainly of European descent. They are industrialised countries with both public and private health care systems, and a well developed social welfare system. Oceania is the south eastern part of Asia, and in the 1990s it is Asia which has replaced the traditional focus of Europe, especially for trade. In this paper I want to first, briefly introduce some of relevant social history of the countries, which may aid the prediction of the future paths that they are likely to follow in the "genetic age". Then I will discuss some results of opinion surveys and discuss the likely consequences of increased genetic testing.

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.


Table 1: Sample Characteristics - expressed as %'s of total respondents (N)

Public
Medical/Biology students
High School Teachers
NZ AJJ91 InTR IsNZA JInT PSHKNZb NZsAbAs JbJs
N329201 352551568 68944650 96110435 325232164 250104206 96251114 560383
%12213 2326-36 43low60 7066- 50708052 612847 213726
Time23/933/93 3/937/917/93 9/934/9311/93 3/933/936/93 7/939/938/93 10/9312/938/93 8/938/938/93 7/937/93
Male4145 525361 48363841 506753 42462345 646248 638892
Female5955 484739 52646259 503347 58547755 363852 37128
Rural32329 27-22 54-2015 115115 4213412 692725 213734
Urban7771 73-78 4690+80 85894985 588796 88317375 796366
Age (years)
Mean47.445.2 41.739.830.6 37.236.333.4 20.818.121.1 21.821.321.1 19.321.040.8 42.541.842.0 40.740.0
<2055 345 0.591138 922922 2036910 749 500
<301819 212455 18283760 87077 80973190 333529 291715
<401520 262322 4328141 011 0.5000 474040 463434
<501415 192513 3117231 00.20 0000 132021 192532
<601512 14124 71190 000 0000 011 12117
61+3329 171210.2 760 0000 000 0000 32
Marital status
single2526 292953 38333495 989997 999999100 9613 162224
Married5962 666645 5954623 012 0.410.4 0838679 707775
Div/wid.139 540.2 31040 000 100.40 665 1011
Other33 0.3120.3 302 2010 00.40 2234 00.6
Children
No child3339 403555 22414897 10010098 9610099 1002215 242430 28
Pregnant1.41 123 20.541 001 000.40 311 111
One86 9141624 2961 000.42 010 881213 1513
Two2625 36321939 24211 0002 000 39383127 3640
>2 child3129 14177 135210 000.4 0000 283832 351818
Education
High school4336 37374 2131629 94547 402371 101 100
2 year

college

1815 19226 3182048 4613 180773 120.4 10.21
graduate2528 313131 35373920 23827 605006 645859 577882
postgrad.916 10752 5928253 0051 134708 303739 412117
other55 3371 400 0225 304 430.40 0.80.3

How important is religion?
Very2723 10-40 46103828 19536 54893221 201742 47710
Some2627 33-27 44381620 411624 38114140 172923 262537
Not too2724 40-15 8283418 203418 702226 333219 104536
Not at all2026 17-18 2241234 204522 0.40513 302216 172317
Religion
None2525 39-2 0.220045 32683 0.402560 --- ---
Christian7071 8-34 0.457049 41524 1.79924 40--- ---
Moslem00 0-4 0.6621 407 0.40110 --- ---
Buddhist0.31 47-0.4 99202 6240 971360 --- ---
Hindu00 0-590 0Jew:0 20650.4 040 ---- --
Other54 6-10.3 1983 15320.4 030 ---- --
Race
Caucasian9291 0-0.2 0-4379 6100 0210 949395 98--
Asian12 100-592 -2311 23100479 989599 0.5031 --
African00 0-0 0-40 000.3 000.41 010 0--
Indian0.30 0-94 0-01 7095 0010 MaoriMaori1 0--
Arabic01 0-0.6 0-40 000.6 0000 120 1--
Other76 0-0.48 -269 90021 030 5410 --
Income4
<200003218 373121 28245625 143624 41525969 001 32727
<350002928 343322 42253510 191727 32242324 939 44747
<500002024 151823 2124717 211425 1612102 475249 641918
50000+1930 141834 927248 463324 111285 444541 2978

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).


Table 2: Privacy of Genetic Information and HIV status

Public
Students
US92 NZAJ InTR IsNZA JInT PSHK
If someone is a carrier of a defective gene or has a genetic disease, who else besides that person deserves to know that information?

Employer

Yes3320 18193048 22205 892147 413931
No6358 60564227 567277 69724732 484249
DK422 22252825 22818 23193221 111920
Insurer
Yes5839 39184451 37626 26184358 526155
No3831 38562822 333052 46562522 342220
DK430 23263827 302422 28263220 141725
Spouse or fiance
Yes9895 96908098 928694 90917395 989687
No23 3481 484 4393 114
DK12 16121 462 66182 139
Other immediate family
Yes7074 74895887 714861 57895291 918876
No2713 145226 154224 254184 4713
DK213 126207 141015 187305 5511

If someone has HIV (the AIDS AIDS virus), who else besides that person deserves to know that information?

Employer

Yes4648 284560 24602938 254255 614853
No2933 523119 55324540 553425 303526
DK2519 202421 2182622 202420 91721
Insurer
Yes5857 245461 37744436 275163 646361
No2022 492415 35123538 492219 252017
DK2221 272224 28142126 242718 111722
Spouse or fiance
Yes9898 938298 96929696 947696 999892
No12 371 2232 292 111
DK10 4111 2612 4152 017
Other immediate family
Yes8177 896685 70805666 905889 938781
No914 567 17142521 4205 488
DK109 688 1361913 6226 3511


World-wide Support for Prenatal Genetic Screening

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

Public
Students
US86 J91NZA JInT RIsNZs AsJs InT PSHK
Yes8976 79827672 889288 668174 7283 618585
No97 128812 328 21129 125 2656
DK217 9101616 964 13717 1612 13109
General useNZ AJIn TRIs NZAJ InT PS HK
Number322 196339 530681459 5095110 430312 230157 248104
Not stated22.4 21.935.141.7 27.042.764 25.321.842.3 35.921.3 44.643.6 39.4
Don't know0.3 01.80.6 0.61.10 001.4 1.60.4 0.61.2 1.0
Save life8.7 9.216.58.9 6.911.34 11.65.58.1 7.44.3 12.73.2 5.8
Parent's life16.5 23.015.320.2 2.94.120 29.537.314.9 23.72.2 6.425.0 13.5
To know17.4 11.211.82.5 9.72.40 3.212.73.5 1.07.8 2.56.9 3.9
Improve quality of life8.1 7.72.91.5 13.45.00 2.29.10.9 3.59.1 02.4 0
Depends on case5.6 7.73.52.5 0.72.06 13.74.51.6 0.31.7 4.50.4 1.0
Improve genes3.7 6.61.57.4 3.211.12 3.21.81.2 7.72.6 0.66.0 13.5
Other benefit3.1 1.07.71.9 1.93.96 1.103.5 1.91.3 1.94.4 2.9
Health care is a right16.8 21.412.717.2 10.74.114 8.410.919.8 18.921.3 16.615.3 24.0
Economy13.4 13.30.94.9 11.60.74 13.711.81.2 6.110.0 12.15.2 10.6
Fetus right to life4.3 3.12.10.8 002 14.77.31.2 1.60 3.82.0 1.9
Eugenics/Misuse0.6 0.50.91.5 1.00.40 5.301.4 2.20 2.50.8 0
Play God/unnatural1.6 0.50.30.6 0.70.20 2.100.5 0.30 0.600
Ethics0.60 2.100 0.4000 0.50.3 0.41.9 00
Health risk0.6 00.30.4 0.90.70 1.100.2 1.31.3 00 1.9
Other harm4.0 2.05.32.3 0.30.10 2.24.53.7 1.30.9 1.31.6 1.9

Would you want such a test during (your/your spouse's) pregnancy? Why?

US86 US92J91NZ AJIn TRIs NZAJ InTP SHK
Yes6964 57667361 647780 84636966 688253 8377
No2732 17181516 21138 16241510 16732 610
DK44 26161223 151012 0131624 161115 1113
Personal UseNZ AJIn TRIs NZAJ InTP SHK
Number319 196330 532681442 5095110 423308 230156248 104
Not stated25.4 28.645.342.1 32.041.268 24.225.542.8 41.923.046.8 43.240.4
Don't know0.6 0.51.80.6 1.92.00 004.31.0 1.31.30 0
Save life11.0 13.318.711.5 10.712.22 11.610.913.0 8.810.414.7 11.315.4
Parent's life22.3 32.117.228.6 7.81.822 25.340.922.2 30.87.814.1 28.221.2
To know16.3 13.38.83.0 21.31.82 14.715.53.3 4.921.77.7 16.114.4
Improve quality of life6.9 3.53.62.2 6.52.70 2.18.20.9 3.66.50 2.40
Depends on case13.5 14.34.58.8 2.10.96 14.79.16.4 3.62.27.7 1.69.6
Improve genes2.8 6.10.38.3 2.17.52 2.100 8.43.50 2.010.6
Other benefit4.1 2.06.91.3 0.65.02 00.94.5 0.30.41.9 4.41.0
Health care is a right0 01.80.2 3.43.22 004.5 0.312.60 00
Economy2.22.6 00.41.3 002.1 0.901.0 001.20
Fetus right to life7.5 4.10.90.8 1.002 17.97.31.9 1.61.75.1 3.61.0
Eugenics/Misuse0.3 0.50.30.2 0.70.20 1.100.4 0.700 0.40
Play God/unnatural4.7 5.12.14.7 0.40.52 5.36.40.7 1.61.78.3 0.41.0
Ethics0.60 1.20.20.3 0.501.1 0.900.3 0.400 0
Health risk0.6 1.50.90.8 0.71.10 1.11.81.9 1.61.34.5 02.9
Other harm2.5 2.02.72.6 1.01.62 1.13.61.7 2.60.43.2 0.40

"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.


Table 4: Support for abortion of handicapped fetuses*

To what extent do you agree or disagree with the following statements?

++ Agree Strongly + Agree = Neither - Disagree -- Disagree Strongly

Public
Medical or biology students
High School Teachers
NZ A JJ91In TRIs NZAJIn TPS HKNZbNZs AbAsJbJs

f. A woman can abort a 4 month old fetus.
++914 6-53 141411 5963 110 101089 32
+2924 23-1214 292721 2629510 3713 2024129 1919
=1723 33-1217 262919 26381119 12325 23272425 4645
-2322 29-3039 201023 23203150 72737 25202422 2527
--2217 9-4127 112026 2044738 884225 22193235 77

g. A woman can abort a 4 month old fetus that has congenital abnormalities.
++2732 6-2935 433110 8172625 11418 24252217 104
+4240 45-3844 442533 49454046 73853 41312528 3941
=1314 28-139 102017 23311312 112716 20282126 4042
-87 10-128 11415 126811 241010 76147 89
--107 2-84 21015 81136 57113 8101822 34


Other reasons for genetic screening included saving the fetus, saving the parents and more positive support for a right to chose and decide to abort. Only 1-2% in Japan said the fetus had a right to life; 3-4% in Australia and 4-8% in New Zealand. At the end of 1993 there was debate about a proposal for the time limit for abortion for handicapped fetuses in New Zealand being extended beyond the general limit for "mental health reasons" of 22 weeks. The result of this debate may have some repercussions for genetic testing. In the 1992 Fukui Seminar, Dr Hiroko Kawashima gave a very revealing comparison between attitudes to genetic testing in Japan and the USA (5). 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.

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.


World-wide Support for Gene Therapy

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).


Table 6: Acceptance of gene therapy for specific cases in International Bioethics Survey

Q28. How do you feel about scientists changing the genetic makeup of human cells to:

++ Strongly Approve + Somewhat Approve - Somewhat Disapprove - - Strongly Disapprove DK Don't know *UK sample from 1994, see text.

Public
Medical or biology students High school teachers
NZ A J In T R Is U86 US92 NZ A J In T P S HK UK* NZb NZs Ab As Jb Js
a. Cure a usually fatal disease, such as cancer
++ 5860 42 5478 72 5848 57 6763 41 6286 67 7054 61 6360 65 6537 29
+30 29 4131 18 1130 35 3026 33 4727 13 2628 44 3527 35 2722 45 45
-4 5 35 1 210 7 51 1 32 0 50.4 2 12 2 44 6 7
-- 43 2 41 7 07 7 11 0.2 20 1 10 0 62 1 13 4
DK 42 12 62 8 22 1 52 9 71 1 0.40 3 21 4 89 15
b. Reduce the risk of developing a fatal disease later in life
++ 4247 35 4850 46 5039 41 4546 31 5346 49 5647 46 5342 49 4927 19
+36 34 4035 32 3334 38 3737 41 5032 40 3938 39 4531 44 3827 45 46
-9 6 56 12 614 12 117 7 75 11 72 9 35 5 815 12 11
-- 65 1 43 7 09 8 32 0.2 22 2 10 0 84 2 34 4
DK 78 19 73 8 22 3 84 12 81 3 25 6 35 3 613 20
c. Prevent children from inheriting a usually fatal disease
++ 5963 37 6375 68 5251 52 6258 33 6886 57 6157 54 6253 58 5624 22
+26 24 4324 21 1730 33 3225 31 4820 12 3434 30 4123 42 2923 44 44
-5 5 36 2 516 8 63 4 52 1 71 8 24 0 511 12 10
-- 52 1 21 5 07 7 23 0.5 21 1 11 0 73 2 15 4
DK 56 16 51 5 21 3 84 13 80.4 1 34 3 42 6 915 20
d. Prevent children from inheriting a non-fatal disease, such as diabetesdiabetes
++ 4350 25 4263 45 4041 28 3229 18 3859 39 4337 27 5642 49 4716 14
+34 29 3731 28 2630 36 3844 43 4335 34 4344 48 4029 45 3430 35 31
-11 8 1510 6 1020 12 188 14 1413 4 118 9 195 6 68 22 23
-- 75 2 82 11 49 14 74 3 53 5 22 2 74 5 87 6
DK 58 21 91 8 62 3 910 22 90.4 2 34 12 33 6 720 26
e. Improve the physical characteristics that children would inherit
++ 1015 12 3654 16 1016 16 24 3 3652 16 1411 2 64 2 73 3
+14 13 1627 29 2012 28 2711 12 831 35 2730 26 310 10 812 6 11
-17 19 3511 11 1234 22 2114 31 4713 7 2934 31 2819 17 1816 43 39
-- 4744 16 153 38 4231 33 6750 25 143 25 1714 61 5960 66 5834 29
DK 129 21 113 14 23 3 63 17 63 3 518 6 69 6 714 18
f. Improve the intelligence level that children would inherit
++ 1115 13 4148 18 618 17 21 3 4058 18 1513 2 74 3 62 4
+13 12 1329 26 1716 26 258 13 728 22 3126 23 67 13 912 6 8
-21 21 3510 16 1132 22 2014 26 4512 12 2631 33 2317 15 1618 40 40
-- 4641 19 136 38 3831 35 6953 28 115 21 2320 65 5860 65 5439 30
DK 911 20 74 16 82 3 77 17 93 4 511 4 118 7 1013 18
g. Make people more ethical
++ 1418 14 3168 19 10- - 33 3 2465 37 178 2 -- - -- -
+13 16 1025 18 1222 - -11 13 528 17 2125 63 7- - -- - -
-12 10 3212 11 724 - -10 23 3812 9 1927 34 28- - -- - -
-- 4334 21 166 44 32- - 6241 36 166 15 1614 44 -- - -- -
DK 1822 23 167 18 12- - 1420 18 203 8 1523 19 -- - -- -
h. As an AIDS vaccine
++ 4952 33 4975 74 48- - 5353 27 5475 62 6343 56 -- - -- -
+24 28 3622 17 1128 - -18 26 4017 20 2520 31 31- - -- - -
-6 8 46 3 218 - -6 11 65 2 55 9 3- - -- - -
-- 74 0.3 82 6 2- - 62 3 91 5 36 0 -- - -- -
DK 148 27 153 7 4- - 178 24 152 3 911 10 -- - -- -


Social Consequences depend on Social Systems

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".


References

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.


To next chapter
To contents list
To book list
To papers by Darryl Macer
To Eubios Ethics Institute home page