- Darryl Macer, Ph.D.
Institute of Biological Sciences, University of Tsukuba, Tsukuba Science City, 305, JAPAN
Eubios Ethics Institute Newsletter 3 (1993), 72-76.
Prenatal Genetic Screening: Acceptance of genetic screening is high in Japan, for inclusion under national health insurance. More people say they would personally use it than in the USA.
Abortion of a handicapped fetus: High support, in Japan only 12% are against it.
Privacy of genetic disease and HIV status: People in all countries are similar for sharing information with a spouse. People in Japan may share information more with the immediate family.
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 say the information about genetic disease or HIV should be shared with them, than in the other countries.
Very high support for gene therapy: High support for personal/family use in all countries. There is more support for gene therapy in Japan in 1993 (66% willing /21% unwilling for personal; 74% willing / 11% unwilling for their children) than in 1991 (53% willing /30% unwilling for personal; 66% willing / 18% unwilling for their children), perhaps as a result of increased publicity this year?
Extremely high support for use of gene therapy to cure disease, both as somatic cell (a,b) or germ-line (c,d); high support as an AIDS vaccine (h). Rejection of enhancement genetic engineering (e,f,g).
In early 1993 I organised an international survey, in Japan, Australia and New Zealand. Collaborators joined the project in other countries to add to the survey. This opinion survey (using mail response in random nation-wide samples) was conducted with collaborators in several countries of the world from March - October 1993 (still ongoing in several), including Australia, India, Israel, Japan, New Zealand, Norway, Philippines, Russia, Singapore and Thailand.
The opinion surveys included questions about biotechnology, genetic engineering, bioethics, disease were conducted among the public, high school teachers, and medical students in Australia, New Zealand, Japan and other Asian countries. These surveys included many open response questions to look at the reasoning that people have in different countries.
International society is facing many policy choices for the adoption of new medical, and especially genetic, technology. In every country individual's are facing personal choices in the use of genetic tests, and in the use of new medical therapy. Social interactions depend on individual values that people have, and in medical questions it is the values of disease and health that are most important. However, attitudes to disease also affect the education of different groups of society, and employment of people. If people are labelled handicapped or diseased, it can affect their life in many ways. There are also many questions about the future consequences that the genetic revolution will bring. Open questions on the meaning of life and nature were also included, as were other questions relevant to environmental and agricultural biotechnology issues.
The way that people make decisions in any one country is not known, let alone whether decision-making is different in people in different countries. Bioethics is the study of ethical decision-making in questions of life. Many assumptions have been made in comparative culture studies, including the assumption that a different social organization means different individual decision-making. One way to be more systematic in the study of culture is to conduct opinion surveys, and in the feasibility of this study was suggested by the similarity in results between Japan and New Zealand seen in the book Attitudes to Genetic Engineering I published in 1992.
The results of the countries in which data is complete are Japan, Australia and New Zealand. Public samples include: Japan (J; N=352), NZ (NZ; N=329), and Australia (A; N=201). Russia (Kaushik & Macer) is not included, neither are further countries are being surveyed with the cooperation of collaborators, but data is incomplete for Thailand (in Thai and English) and India (in English).
Student samples were chosen from the following institutions with the kind cooperation of collaborators: Medical school student samples in Australia (As; N=110 Monash University, first year, thanks to Prof. P. Singer), Japan (Js; Fukui Medical School, N=123, thanks to Dr. M. Hirayama & Prof. N. Fujiki; and Tsukuba University Medical School, N=308, thanks to Prof. H. Hayashi), New Zealand (NZs; N=96 Otago University, all years, thanks to Prof. D.G. Jones), the Philipines (Ps; N=164 UST, all years, thanks to Dr A.T. Alora), Singapore (Ss, biology students, University of Singapore, N=21, thanks to Dr T.M. Lim; and Singapore Polytech, N=140, thanks to Dr C.C. Ong). Further countries are being surveyed with the cooperation of collaborators, but data is incomplete for Thailand (in Thai), India (in English), or Israel.
A high school biology and social studies teacher survey is progressing in Japan (Jb; N=507), NZ (NZb; N=200) and Australia (Ab; N=212). A few questions overlap, and results for these questions are still not final.
The data is compared to results of previous surveys by D. Macer in Japan, and other surveys in the USA (see Attitudes to Genetic Engineering: Japanese and International Comparisons, Eubios Ethics Institute, 1992): J91 = Macer, Mid 1991 (N=551); also: US86 = US OTA, Dec 86 (N=1273); US92 = US March of Dimes, May 1992 (N=1000). General data on samples is on an accompanying page. A survey questionnaire is available.
The responses given by people in different countries are being analysed. Results from other countries will be released gradually as complete, and the full results and full reasons are in the book, Bioethics for the People by the People. The tables from this paper are deleted in the on-line version, please refer to the tables in the book.
Prenatal Genetic Screening
In Japan 76% favour the tests and 8% oppose, the same as in 1991. The support in all countries is high. Note: the US question did not say funded - and the likely number in the US would be a little less support for funded tests!
Personal use of tests is less than general support, the USA is the country most opposed to the tests. Japanese are more undecided than other countries, but a possible shift towards "yes" since 1991.
Major reasons in the open comments given in all countries were similar, but in Japan there were less reasons given for health care is a right or saving money. The main reasons were: Q16: 13% (J), 21% (A) and 17% (NZ) said "Health care is a right for all". 1% (J), 13% (A) and 11% (NZ) said it would "save the country's health care system money"
Q16&17: 9-18% said screening saves the fetus; 16-31% said it saves the parents; 9-17% said there was a right to choice 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 NZ.
Q16. 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?
Q17. Would you want such a test during (your/your spouse's) pregnancy? Why?
Abortion of a handicapped fetus
The genetic screening results need to be balanced by the abortion question, which was done, and was found to be consistent with the results. The reasoning was not asked for this question. It was in a series of statements which looked at general bioethical and science questions.
In Japan only 12% disagree with abortion of a handicapped fetus, Q1g; why is the abortion law against it? People in all countries see fetal disease as a justifiable reason for abortion. There are few differences between samples on this question, the sample with the most objection so far is the Philippines medical student sample.
Q1. To what extent do you agree or disagree with the following statements?
f. A woman can abort a 4 month old fetus.
g. A woman can abort a 4 month old fetus that has congenital abnormalities.
Privacy of genetic disease and HIV status
People in all countries are similar in that they are willing to share information most with a spouse. People in Japan may share information more with the immediate family, which is consistent with the family image seen in Japan.
People in the USA say that employers or insurers deserve to know the information much more than in the other countries. This could be because the medical insurance system in the USA relies on insurance companies while in these three other countries it is primarily government funded. It is interesting that despite the supposedly deeper discussion of ELSI issues in the USA, the apparent respect for privacy is less. It may be less importance is given to social responsibility to the whole community, and it would be interesting to explore the issue more in the USA.
To compare the case of genetic disease to another topical issue, AIDS, the following question was also used. The results are generally very similar.
Q21. If someone is a carrier of a defective gene or has a genetic disease,
who else besides that person deserves to know that information?
Q23. If someone has HIV (the AIDS virus), who else besides that person deserves to know that information?
Employer; Insurer; Spouse or fiance; Other immediate family
There is very high support for personal/family use in all countries. There is more support for gene therapy in Japan in 1993 than in 1991, perhaps as a result of increased publicity this year? In japan the Ministry of health and Welfare has issued guidelines, but the Ministry of Education is still to issue guidelines, which are required before clinical trials in university hospitals can begin. The guidelines are urgently needed to allow gene therapy trials to begin in Japan. Overseas about 52 clinical trials have been approved in many countries already.
The major reasons cited in all countries was to save life or increase quality of life. Many people who were somewhat willing said it depends on the situation. There is very little opposition.
The following questions were looking at the conditions that gene therapy is acceptable for, and were modelled on extensions of OTA questions used in 1986, so that comparisons could be made. The results show: Extremely high support for use of gene therapy to cure disease, both as somatic cell (a,b) or germ-line (c,d); high support as an AIDS vaccine (h). Rejection of enhancement genetic engineering (e,f,g). The rejection of cosmetic uses is encouraging, and suggests people can draw some lines. The agreement with germline therapy is interesting, maybe many do not realise the implications of it.
Q26. If tests showed that you were likely to get a serious or fatal genetic disease later in life, how willing would you be to undergo therapy to have those genes corrected before symptoms appear? Why?
Q27. If you had a child with a usually fatal genetic disease, how willing would you be to have the child undergo therapy to have those genes corrected? Why?
Q28. How do you feel about scientists changing the genetic makeup of human cells to:
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 diabetes
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
As said in the summary above, these results suggest a number of interesting points for study of bioethics and genetics. The conclusions will be made after the project is complete in more countries, in the forthcoming book.