pp. 195-198 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.

A survey of attitudes of people with higher education to genetics and diseases in Beijing

Wilson H.Y. Lo, Shaomei Han, Ju Zhang, Jasmine L. Lee
Institute of Basic Medical Sciences, Peking Union Medical College, Beijing, CHINA

A survey of attitudes of people to genetics and diseases in China has been carried out. This study was done in a short time period so that a large scale survey was not possible. We have, therefore, limited this study to the Beijing area. We used the questionnaires of Fujiki and Verma (1), and Macer (2) (see papers in this book by Verma, Hirayama, Macer), with some modifications to adapt them to the Chinese situation. The former survey deals mainly with attitudes towards the handicapped and genetic diseases, and the latter deals with science and technology.

It was apparent that without a considerable educational background many of the questions would be difficult to understand. Hence, we picked cadres, college students, doctors and nurses as our participants (nurses have an education equivalent to high school graduates). Otherwise, the selection of participants was random though effort was made to balance the numbers between the different categories. Nevertheless, it was not uncommon for a question to be left unanswered, presumably because of difficulty in understanding the meaning of it, and the percentage does not always equal 100%.

From Table 1, we can see that most of the participants were young adults, relatively well educated, and mostly in the middle income group. About half of them had a medical background. Very few had religious belief.

Table 1: Sample characteristics (N, %)
Sex Male 98 44.3%; Female 123 55.7%
Religion Believer 21 9.5%; Atheist 200 90.5%
Marital status Non-married 123 55.7%; Married 97 43.9%
Children Without 118 53.4%; With 103 46.6%
Gestation Without 52 42.0%; With 71 58.0%
Artificial abortion Yes 41 33.3%; No 82 66.7%
Age 20+yrs 124 56.1%; 30+yrs 48 21.7%; 40+yrs 49 22.2%
Income Low 65 29.4%; Middle 129 58.4%; High 25 11.4%
Education High school 32 14.5%; College 108 48.9%; Postgraduate 78 35.3%
Occupation University students 86 38.9%; (Medical 29; Non-medical 57); Doctors 26 11.8%; Nurses 58 26.2%; Cadres 51 23.1%
Since most Chinese do not have a good grasp of the English language, the questionnaires were first translated into Chinese. The survey was either carried out in group sessions with interviewers present to explain the meaning of questions that were unclear or the questionnaires were sent to participants with names and addresses of interviewers in case help was required. Many of the participants expressed the view that in a number of questions, especially those of a quantitative nature, they were really just taking an educated guess.

The results were analysed statistically with a computer. If there was a difference in attitude to a specific question between different categories of people, a chi square test was conducted. Only those when a statistically significant difference was found are possible explanations explored.

Results and Discussion

1. Attitudes towards the handicapped (see Table 2)

The majority were concerned about the welfare of the handicapped and many would care for them, though not necessarily with a preference over the healthy. Most believed that the local or provincial government should be mainly responsible for their care. However, most were of the opinion that present rehabilitative facilities are inadequate and it is difficult for the community to provide them. The Chinese Society of the Handicapped is instrumental in fighting for better welfare for the handicapped. Most believed that it is better for the handicapped to live in their own circle for the sake of their own happiness. The great majority did not want a handicapped child. They preferred to abort or refrain from being pregnant even if there was only a 1% risk. This actually reflects upon their ignorance because a recent nation-wide survey in China revealed congenital abnormalities had an incidence of 1.3% in uneventful pregnancies. Most were of the opinion that it is not good for a handicapped child to come into this world. The "one child per family" policy in China may also have something to do with such an attitude.

Table 2: Attitudes towards the handicapped

Welfare of the handicapped is secondary: 77% disagreed
Prefer to spend more on healthy people: 41% disagreed
Local/provincial government should care for the handicapped: 60% agreed
Care for handicapped by community is difficult: 50% agreed
Education for handicapped is useful: 94% agreed
Rehabilitation facilities inadequate: 35% agreed; 42.5% uncertain
Difficult for handicapped to work: 46% agreed; 42% disagreed
Better for handicapped to live in own group: 69% agreed
Sympathy for handicapped: 48% felt this way
Willingness to help handicapped: 81% willing
Bearable risk for handicapped to consider childbearing: 50% would take no risk; 19% would take a 1% risk
Risk of handicapped fetus as reason for abortion: 34% would abort even if 1% risk
Chose to abort if fetus affected: 72% would do so
Right of fetus to survive: 53% strongly disagree; 19% somewhat disagree; 33% believed it is not good for handicapped to come into the world; 40% did not answer

Table 3: Attitudes towards genetic diseases
Heredity as a cause of disease: 90% were aware of this
Genetics is scientific: 80% agreed
Heredity as the cause of most congenital disorders: 60% agreed
Knowledge about genetic diseases: 84% could cite 4-5 genetic diseases; 60-80% were right as to which of the 9 diseases listed are genetic
Factors determining the importance of risk: 89% thought the severity of disease is most important; 42% the possibility of treatment is most important
Course of action if fiancee's close relative was handicapped: 72% would consult a doctor
Consanguineous marriage: 93% disapproved of it
Prenatal diagnosis, CVS and amniocentesis: 75% knew of it; 50% from health workers
Fetus at risk for Down's syndrome: 80% willing to perform prenatal diagnosis; 87% would abort if prenatal diagnosis was positive of which 57% did not want another Down syndrome baby
Fetal sexing to get a boy: 60% disagreed; 35% considered it as sexual discrimination; 42% did not answer
Family planning and contraceptive measures: 49% thought the husband should adopt contraceptive measures; 45% thought that the wife should
How one learns about genetics: 95% learned through lectures

2. Attitudes towards genetic diseases (see Table 3)

Most of the participants had a considerable basic knowledge of genetic diseases and were more receptive of prenatal diagnosis, especially those with a medical background. But they were usually uncertain when asked quantitative questions. This is evident from the fact that 63.3% were uncertain of the incidence of congenital diseases, 54.4% as to the frequency of mental retardation and 30-50% with respect to the recurrence risk of certain genetic diseases.

The great majority were against consanguineous marriages. The marriage law in China prohibits it. 60.2% were found to be against fetal sexing for getting a boy, however, 9% were for it, and 29% would consider it under certain circumstances. Those against it believed that this represents sexual discrimination, and some because it would disturb the sex ratio. A considerable proportion were for it, when you include the number who would consider it under some circumstances. This is probably due to the Chinese tradition of continuing the family lineage.

Most were willing to take prenatal diagnosis and gene therapy, as well as presymptomatic tests for serious genetic diseases. It is doubtful, however, whether they knew of the deleterious "stigmatising effect" of presymptomatic testing. Again most would decide to abort a fetus affected by a serious genetic disease just as in the case of a handicapped fetus. As to which of the couple is to take contraceptive measures in family planning, interestingly, more males count on the wife, and more females, on the husband.

3. Attitudes towards science and technology (see Table 4)

Most were interested in science and technology and believed that science has done more good than harm. However, 54% were of the opinion that the general population is poorly informed. Not many knew about patents or copyrights though they had heard of them. Maybe this is because they are relatively new to Chinese. The majority had heard about the new scientific developments listed in the questionnaires but only 30% knew something about them. Most believed that China should explore them, but 60% were somewhat worried about such research.

Table 4: Attitudes towards science and technology (S&T) (ref 2, survey question numbers)
Interest in science and technology (Q1): 94% were very interested; 54% felt that the general population is poorly informed; Read articles and journals about S&T or watch TV programs about S&T (Q2-4); 90% did so frequently
Media coverage of science and technology (Q15) : 50% regarded it as average in China
Science does more good than harm (Q6): 86% agreed; 62% believed that science has contributed much in China
Knowledge about new scientific developments, e.g. genetic engineering (Q5): 90% have heard of them. Only 30% knew something about some of them; 70% thought China should also explore them;
Genetic manipulation (of human cells, animals, plants, microbes) (Q7); 70% had heard of it, and 30% had some idea about it. It was acceptable to 70%; 60-70% believed that genetic manipulation would bring benefits; 50% said that there would also be risks.
30% were somewhat concerned by foods & drugs produced by genetic engineering (Q8)
60% approved of the use of products from genetically engineered organisms (Q19)
Prenatal diagnosis (Q9): 85% willing to take it if indicated and through national insurance
Presymptomatic test (Q11) : 72% willing to take it
Gene therapy (Q13, 14): 73% willing to take it if indicated; 80% willing for their children to take it
Patents and copyrights (Q17): 95% have heard of them but knew little about them
Regulation of biotechnology research (Q20) : 54% favoured joint regulation by the government and industry
Science should receive more government support (Q16): 91% agreed
4. Differences in attitudes between sample groups

a) Many of those that had children would abort even if the risk of a handicapped fetus was less than 5% (57 respondents said that they would abort even if <5% risk, 35 if >5% risk), whereas many of those with no children would be willing to take a greater risk (48 said they would abort even if <5%, 59 if >5%) (X2=5.8, p<0.05).

In parallel with this, more females, especially those with children, denied that a handicapped fetus has a right to survive, or life. Of the males, 45 respondents agreed the handicapped fetus had a right to survive, and 41 disagreed; whereas 32 of the females agreed and 75 disagreed (X2=9.99; p<0.01). This is to be expected since it is usually the mother that bears the main burden in bringing the child up. The same factor is also seen in the abortion of fetuses affected by genetic diseases (Table 5).

Traditionally, the welfare of the majority has always been given more attention in China. Hence it is not surprising that the welfare of the handicapped has been relatively ignored. The present low salary system in China has probably accentuated the situation because a handicapped child will naturally lower the living standard of a family. While people do not want a handicapped child, they are sympathetic to them and willing to help. The Chinese Society of the Handicapped is playing an important role to promote the welfare of the handicapped. The Chinese Congress recently passed a law protecting the rights and welfare of the handicapped (3). These are encouraging.

b) In family planning, an interesting phenomenon is the fact that more males would place responsibility of taking contraceptive measures on the wife (56 said the wife, 36 the husband), and more females, on the husband (72 said the husband and 43 the wife) (X2=12.7, P<0.01).

c) As to be expected, people with a medical background knew more about genetic diseases and prenatal diagnosis than those with a non-medical background (Table 6).

d) Also people with more advanced education were more interested in science and technology, as is expected. The numbers expressing very much interest and average interest in science were: high school level, 25 and 7; college, 107 and 1; and postgraduate, 73 and 5, respectively (X2=13.8, P<0.01).

e) Religion and income did not play any important role in our survey. This could be due to the fact that only 10% of our participants were religious so the sample was small, and that there are less relative differences between different income groups in China compared to developed countries.

Table 5: Abortion of a fetus with a genetic disease (Numbers of respondents)

Sex No; Yes (sometimes); Yes; X2; P;
Male 7 13 60 6.86 <0.05
Female 6 6 100

Children X2 P
No 4 17 77 13.9 <0.01
Yes 9 2 83

Table 6: Occupation and knowledge of medical genetics (Numbers of respondents)

Occupation Genetics is causal factor of diabetes (Aware; Unaware) X2; P;
Medical 69 18 7.09 <0.05
Non-medical 38 26

Knowledge about prenatal diagnosis (Good; Poor); X2; P;
Medical 106 8 35.5 <0.01
Non-medical 56 40


1. Fujiki, N. & Macer, D.R.J., eds., Human Genome Research and Society (Christchurch: Eubios Ethics Institute 1992).
2. Macer, D.R.J. Attitudes to Genetic Engineering: Japanese and International Comparisons (Christchurch: Eubios Ethics Institute 1992).
3. "Law for the Protection of the Handicapped", in Decree #36 of the Chairman of the People's Republic of China (The law came into effect from 15 May, 1991).

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