Editors: Norio Fujiki, M.D. & Darryl R.J. Macer, Ph.D.
Wilson H.Y. Lo, Shaomei Han, Ju Zhang, Jasmine L. Lee
Institute of Basic Medical Sciences, Peking Union Medical College, Beijing, CHINA
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.
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.
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
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.
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.
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).