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13.1. Ethical Dilemmas in Genetics and Reproductive Decisions from the Views of Chinese People

- Baoqi Su
Research Center for Bioethics
and the Department of Social Sciences, 
Chinese Academy of Medical Sciences
and Peking Union Medical College, 
No. 5 Dongdan Santiao, Dongcheng District,
Beijing, 100005, CHINA
- Darryl R. J. Macer
Institute of Biological Sciences, 
University of Tsukuba, 
Tsukuba Science City, 305-8572, JAPAN

1. Ethical Dilemmas in Genetics

The quality of life relates to the individual person, and conceptions of it change with time and situation. With the development of the genetics and more genetics technology applied in the clinical practice, we must justify how to use them, what are the ethical reasons to use them.

Every human being has a different set of genes. Our genetic information is very important in determining parts of our physical characters and intellectual capacity. All things being equal it is the exception for anyone to want to have a baby born with a genetic disease. People want to have healthy babies. This is true in every culture, although there are wide variations in the definitions of genetic disease, and in the extent to which societies allow individuals choices in prenatal genetics and reproductive selection technology.

Negative eugenics means to decrease the proportion of genes that cause disease. Positive eugenics means to take some action to increase the frequency of desirable genes in a population. For millennia people have had ideas of selective breeding to increase the representation of people with "good genes". Plato had considered the desirability of achieving these ends by subtle, or direct, incentives to control marriage, and/or mating, of supposedly "fit" human beings. Allen (2001) wrote that eugenics defined by Galton meant "truly- or well-born," and referred to a plan to encourage the "best people" in society to have more children (positive eugenics) and to discourage or prevent the "worst elements" of society from having many children (negative eugenics).

During the first three decades of the 20th century, eugenics became a popular concept in many countries throughout the world, especially the United States (Pernick, 1996), and, after World War I, in Germany (Kevles, 1985; Macer, 1990). Not only are there serious ethical arguments against these types of reproductive policies, but also the above attempts have fundamental scientific flaws. However, there are individual benefits for the reduction of suffering caused by genetic disease, and the involvement of society in these goals depends on culture.

2. The Chinese concept of "Yousheng"

The Chinese Encyclopedia of Medicine (1994) defines eugenics as: "a science for the improvement of human heredity, prevention defects of births and raising the quality of the population by research applying genetics theories and approaches." In fact, most such eugenic practices pay attention to the prevention the defect of the births. Social policy interventions associated with genetics measures exist in many countries. Such social policies intervention should be based on the individual's informed consent. This science can be called "negative eugenics" (Wang, 1999). Eugenics, unlike pure genetic science, involves decision making on various issues, and it involves the risk of making errors.

"Maternal and Infant Health Care Law" was implemented in 1995. Foreign critics of China focused on articles 10 and 18, which are (Doering, 1998):

Article 10: Physicians shall, after performing the pre-marital physical check-up, explain and give medical advice to both the male and the female who have been diagnosed with certain genetic disease of a serious nature which is considered inappropriate for child-bearing from a medical point of view: the two may be married only if both sides agree to take long-term contraceptive measures or to take a ligation operation for sterility. c
Article 18: The physician shall explain to the married couple and give them medical advice for a termination of pregnancy if one of the following cases is detected in the prenatal diagnosis: (1) the fetus is suffering from genetic disease of a serious nature; (2) the fetus is with defect of a serious nature; and (3) continued pregnancy may threaten the life and safety of the pregnant woman or serious impair her health due to the serious disease she suffers from.

The intention of the Chinese government in enacting the law is that people in China should be warned of the risks of inheriting heritable genetic diseases, and helped to avoid them among their children (Wang, 1999). There are actually guidelines or laws that prohibit the marriage between close relatives in many countries. This can also be called a type of eugenics. Even though involuntary is included in such eugenics, almost few persons object to it.

Doering (1998, 1999) argued that many international critics had not studied thoroughly even the English translation. He noted that there has not been any similar objection against the Taiwanese 'Eugenics Health Care Law' of 1984 ('Yousheng baojian jiating jihua fa'), nor the remnants of eugenics laws in some 'Western' states. This anti-Chinese view stands in the way of a fair and balanced judgment, and it does not help Chinese physicians and patients. As many have noted there were new and encouraging concepts in the law inventing new standards for medical personnel, stipulating patient's informed consent, and forbidding sex-related abortion in China.

The issue of healthy babies is a very broad topic, covering not only issues from the Chinese eugenics debate, as it relates to genetic screening, sterilization, and marriage laws, but generally maternal and infant health. In our daily lives, few of us can escape from the eugenic thinking "good in birth". Couples shall decide to delay having a child until they were financially and emotionally ready to be a qualified parent. Most modern governments hope that their people will be energetic, ingenious and enterprising. But eugenic thinking and practice in Chinese thinking should balance the interests of all sides (Wang, 1999), individual, community or society. There is actually a written tradition of universal love as fundamental ethical principle in China for three millennium (Macer, 1998a).

3. Methodology of interviews

What is lacking in the English language literature is adequate representation of the views of Chinese citizens, and academics. In order to clarify what ordinary citizens think in China, and the way that future studies may be conducted, interviews were conducted with both the general public and bioethics researchers in cities and countryside with an emphasis on qualitative study. The data collection in Mandarin Chinese was followed by interpretation of the results considering ethical principles that the respondents were using and translation of words and concepts into English.

The 36 respondents from the general public included 28 women and 8 men aged between 20 to 65 years (Table 1). A range of people in different social positions was interviewed, rather than just focusing on family composition. They were from four different regions in China. The locations were Beijing city and Changping county and Changzhi city and Yangcheng county in Shanxi province.

A fundamental question about conducting social research in a country where people have some risk of persecution from authorities is whether they will give honest answers to interviews, and fully trust that their privacy will be maintained when tape recorded. The interview subjects for the general public study in this paper were chosen through personal acquaintances or subsequent introductions, because an unknown person will not discuss freely some personal opinions. Further attention should be developed if quantitative studies are needed on how to really get a random sample rather than a representative sample as we concentrated on here.

Interviews with 23 persons in the expert group (Table 1), included 10 bioethics researchers; 4 gynecology and obstetrics doctors; 3 health workers for maternal and children health; 3 policy bureaucrats; and 3 members of the All-China Women's Federation. Persons were also met through attendance at an International Scientific Symposium on Genomics and Biotechnology in Hangzhou, China, August 2001, and at the Sixth and Seventh Tsukuba International Bioethics Roundtables in Japan.

13.1 Table 1 13.1 Table 2

4. Public attitudes to genetic disease and handicap

We can see a summary of people's attitudes towards handicapped in Table 2 and towards genetic diseases in Table 3. The respondents who are listed as uncertain include the people who could not understand the questions and could not give the clear answers. Table 2 shows that the majority (53%) thought that handicapped persons had a right to come into this world, while also 19% of respondents disagreed. A majority, 61%, believed that the government should provide for their care and 67% considered it was difficult for the community. At the same time most (83%) said that they would like to help the handicapped.

When asked personally, 78% of respondents would not consider childbearing with the risk of handicap to the child, even only 5% risk, and 83% of they would choose abortion when diagnosed with a 5% risk of handicapped.

Table 3 tells us that most of respondents had some basic knowledge of genetic disease and prefer to consult a doctor when there was any such suspicion. The majority knew that heredity could be the cause of diseases (83%), especially for congenital disorders (72%). All of them were against consanguineous marriages. They knew the marriage law in China prohibits it. Two thirds (69%) would perform a prenatal diagnosis if there were the risk of genetic disease, and 89% of the total would perform an abortion if the diagnosis was positive.

From the interviews we may know people's attitudes towards handicapped persons and genetic diseases. It was shown that majority of parents wanted to be given information by a doctor to decide whether to risk passing on unwanted family traits to the next generation. However, the majority of reproductive choices are not to conceive a child with high risk of hereditary disability or to choose abortion. More than half the respondents thought that handicapped children had a right to come into this world, also some of them disagreed. Most of respondents had some basic knowledge of genetic disease and prefer to consult a doctor when there was suspicion.

13.1 Table 3

5. The burden of genetic disease in a developing country

The results of the interviews with academic "specialists" on these subjects were consistent with the public views. While some academics were happy to be personally quoted, in order to preserve privacy we will give only their background to describe the situation in China for readers. An ethics professor said that, "considering the quality of population and the future of the country, a regulation on promoting healthy birth and rearing healthy children should be implemented. The population of handicapped in China amounts to 54 million, 4.5% of the whole population. The disability has not only brought suffering to individuals, misery to the family, but also burdens to community and country."

In China, physicians have responsibility to provide prenatal care, genetic counseling and prenatal diagnosis (Mao and Wertz, 1997). Most of the people in China are more receptive to prenatal diagnosis than before. Ethical debates were always raised when the fetus was diagnosed as a disabled one. In China it seems easy to get consensus to abort in most cities and provinces, perhaps that is due to the effect of generous propaganda of family planning policy and everyone's responsibility to limit the huge population of China (Sun, 1992). In Peking Union Medical College Hospital, Sun (1992) reported from their prenatal diagnostic service the results of 420 handicapped and genetically diseases fetuses of pregnant women, 98% of the couples asked for abortion. The couples most common reason was life would be very tough for their lives if they insisted to have the disabled children, and so it was better wait to have a healthy baby next time. Of the babies that were born in their ward there were 14 couples who delivered a "disabled" baby in 1991, the outcome of those babies were as follows: 8 cases died in newborn period because the parent did not ask for treatment. They were very miserable and were discharged. Then they were told that the baby died. Some of those told had asked for surgery, but there were many problems, such as the result was unsure and it was too expensive. At last they all gave up. In another 6 cases the babies were taken care of by parents or grandmothers (Sun, 1992). Maybe it would have appeared different in Western countries, because the government could provide the services for disabled children. But the situation is different in China, because one must take economics into account more than in the Western world. The medical cost of treatment is very expensive and wages are low.

A geneticist influential in the Human Genome Project in China in a international lecture to a Conference to the public session on "The human genome project and its social impact: to educate the educators" (Yang, 2002), said, "Concerning 'bad genes' and 'good genes', I insist that there is no 'normal genome' or 'disease genome'. There is no good gene or bad gene, no such thing, because all our genes are good." Referring to the Maternal and Infant Health Care Law, he said, "I really would like to see more of the internationally acknowledged principles embedded into Chinese practices in this field. That is one of the reasons for me to believe that it is really necessary to again and again debate these issues in the field of ethical, legal and social issues."

6. Public support for healthy babies and "Yousheng" in China

The above results of these interviews are consistent with the results of earlier opinion surveys in China, Hong Kong and Singapore. In opinion surveys conducted by Macer (1994) and colleagues, eugenic ideas found both positive support in some developing countries, for example for improving genes by genetic screening; with less negative reaction, for example a few people cited social eugenics programs, or many being against gene therapy for enhancement. The questions regarding genetic screening and gene therapy suggest positive support for eugenics among a significant portion of the population, especially in China (Lo et al., 1994), as well as India and Thailand (Macer, 1994). There was less support for genetic enhancement of genetic screening in Singapore and Hong Kong, but it was still at a higher level than Japan or Australasia (Macer, 1994). A number of specialists disliked the term "eugenics" because it is used in so many different ways as to make it no longer suitable for use in scientific literature.

A survey of attitudes of people to handicapped and genetic diseases in China by Lo et al. (1994), at Peking Union Medical College showed the majority of respondents were willing to perform prenatal diagnosis and even more of them would chose abortion if prenatal diagnosis was positive with the risk less than 5%. This survey was carried among persons with higher education, and half of participants had a medical background in Beijing. Their opinions towards the handicapped and genetic diseases suggest they favor abortion, as 34% said that they would abort even if only a 1% risk of handicapped fetus, and 72% would decide to abort a fetus affected by a serious genetic disease. 87% would abort for Down's syndrome.

The economic burden of looking after persons who need expensive medical care is one that is often too much for persons living in rich countries, let alone for developing countries. The underlying reasons for this support for healthy babies and good birth "Yousheng" may be because Chinese society cannot provide enough facilities, care and welfare for the handicapped. At present the family with a low salary cannot afford expensive health care fees and the expenses to care for a person with a serious handicap. So it could be thought that most Chinese family do not want a handicapped child and from the practical situation they think that it is good for such a child not to come into this world, especially not to come into the country with low economic development and large population. However if someone has an accident and become handicapped they will be looked after, though again resources are limited. It would be an interesting question for future research to compare attitudes to persons with disabilities acquired at different stages of life.

Although a handicapped person is not counted in the government quota for number of children, as the world's most populous nation, China has attempted through the past few decades to curb population growth. The population problem has been viewed very seriously in China, and affects the choices that pregnant women make (Doherty et al., 2001). From 1 September, 2002, the first National Planning Law took effect with the stated intention of preventing arbitrary fining and harsh punishment of families who violate the one child family that have been reported in local communities. Under the new law violators will pay a social alimony based on their income in the local area. The law calls for funding of birth control education from other sources than the collection of fines from violators as been the practice until now. The law requires sex education, which has been neglected until now. Ethnic minorities are allowed to have 2-3 children because of their low number and life in harsh conditions, which is the opposite of some images of social eugenics policies in the past in some countries, which restricted the rights of ethnic minorities.

The number of children that the interviewees had often exceeded one, as older persons did not have to follow these guidelines when they gave birth. There were a few cases of persons breaking the official regulations in those interviewed, having paid a fine. Interestingly, all the persons interviewed were supportive in general of the need for the birth control policy. We did not talk with dissident groups and NGOs who are opposed to the policy, but the support from the general public sample in these interviews conducted with privacy and trust with the interviewer suggests that there is widespread support for the birth control policy among the general public in China.

7. Enthusiasm with science in China

What can we learn from this phenomenon in China? Surveys have found that Chinese people are very interested in science and technology and most believe that science should do more good than harm to human beings (Zhang, 1991). More people in China are receptive to prenatal diagnosis compared to Japan, especially those with a medical background (Macer, et al., 1996). They would receive gene therapy for serious genetic disease for their children. Most of the people surveyed who had basic medical knowledge probably will chose to abort under doctors' advice when there is a chance of a handicapped fetus or serious genetic diseases, even if the risk is very low. The medical staff may have been considering this point in their choices expressed in the survey. The implementation of the laws to restrict marriage of persons with "serious" conditions is under debate by some of the specialists we interviewed in China and the extent of the practice is unknown.

8. Medical genetics and disability rights

The advances of the world-wide Human Genome Project and other research in this field have led to the explosion of our knowledge about our genes which are so widely and deeply involved in our lives. Science is only beneficial if it is applied to society in a proper way. Medical geneticists are in the best position to understand that genes and their related technologies would be most dangerous if they were abused or misused. It is the moral, professional and social responsibility to pay serious attention to the ethical, legal and social issues (ELSI) of genetics (Yang, 1999).

There is a close relationship between eugenics and medical genetics. If a fetus has serious genetic impairment, with a consequence of serious mental deficiency, some people might say that the fetus does not, and will not in the future, have a "life" as "normal" human have a life, it's potentiality is different (Macer, 1998b). Medical geneticists are not out to make superior people, but to combat disease; or even more modestly, to enable individuals to make informed choices in their personal decisions about reproduction. However, there is a debate that medical genetics aims to combat disease not by healing anyone but by preventing the conception or birth of afflicted individuals. It aims to bring about a world less in which fewer people who suffer from hereditary diseases (Wikler and Palmer, 1992). It is argued that children not yet conceived had rights that were being violated.

Those who are disabled children or families with members with a genetic disease, may have their own feelings. They may regard themselves as a social group, no differences to the other groups. They could enjoy their lives although maybe suspected by others. They will feel sad when are separated from others, and will feel happy in the cooperation with others. We should not have negative attitude toward those with hereditary diseases, whether they be one's own children or those of other parents. People agreed that they should not to see the disabled person in the way of their disabilities, whether a blind person or someone who cannot hear. At the same time that we show our sympathy, we need to do our best to help them, to provide the facilities and to remedy the barrier environment, in order to let their lives become close to a normal life. A so-called "normal life" differs between countries and cultures.

For the parents who have the hereditary condition and have high risk to conceive a disabled child, we need to respect their own reproductive decisions. The genetic counselors have responsibility to tell the disease, but have no right to help making decision. They desire to conceive a healthy child and also not to regret conceiving an unhealthy one. They will wish the best for them, but when it turns out children to be born with a disease, they still love and will take care of them. Studies in Hebei province in China found that females have poorer health than men observable during young adulthood (Anson and Sun, 2002).

However, it is a common desire to have a healthier baby than a diseased one. It claims that the disease is undesirable, the person with the disease is not (Wikler and Palmer, 1992). We could talk about treatment of "sick" babies, for example, those with Down's syndrome. Sun (1992) showed how many babies appear to be neglected when they suffer from a handicap in China leading to their early death. This may be a problem in all countries, especially with limited resources.

It is a reasonable assumption that people do not wish to be diseased, nor do they wish their children to be so (Green, 1997). There are also non-genetic interventions being used to reduce birth defects. One of the simplest remedies that is now being introduced is prenatal and preconception folic acid, to lower the risk of spina bifida; and neural tube defect. This is a very important area of prenatal care, and does not mean we are against persons who suffer from these illnesses.

There was universal disapproval of consanguity. Consanguineous marriages were banned in most of nation of antiquity (Macer, 1990). There are also the laws that prohibit the marriage between close relatives in many countries today. This can also be called eugenics.

9. Conclusion

This paper concludes that people in China wish to promote the idea of healthy babies and will accept the use of medical genetic techniques for prenatal screening and selective abortion of fetuses at risk for genetic disease. The Chinese government policy is concerned with the avoidance of avoidable genetic handicap among future generations. These moves do not appear to be linked to discrimination against the present population of persons with a genetic disease directly (Beardsley, 1997).

The "Maternal and Infant Health Care Law" is not be very different in its effect from the services provided elsewhere, where public health services offer genetic counseling, on occasion, abortion if there is proof that the outcome of a pregnancy will be a seriously handicapped child. The chief beneficiaries of the law, which should be voluntary, are parents and their children. To the extent that seriously handicapped children may be an expense on public finances, there is also a benefit to nation. The eugenics thinking in the law belongs to negative eugenics and may be justified ethically if the parents have choice, given that Chinese society accepts abortion.

From the social point of view, China is a developing country with the biggest population of the world. It has no ability to provide everybody a good social welfare for health care. Thus sometimes the social's choices are to save the limited resources and to use them in more urgent and effective cases. This was easily accepted by Chinese people, therefore the majority of the couples that were reported to us, and in studies (Sun, 1992) gave up treating the disabled children. We could not blame them in anyway, for there is only sympathy.

There is impact on decision making of the one child family policy, the people have strong desire to have a healthy baby, they will easily choose abort or give up treating disabled child and hope for adoption next time. The government cannot provide enough facilities, and care and welfare for the handicapped. The family with a low salary cannot afford to care for a handicapped child. The most important ethical problem is should the couple make the decision to abort a disabled fetus.

To better understand the conditions of persons with disability, future interviews will be made with parents with hereditary conditions. Comparisons of the live of persons in different countries would be useful. While geneticists who assist them in this choice may profess neutrality, studies suggest that many may not leave the decision entirely up to the parents (Mao and Wertz, 1997).


The authors wish to thank the participants of the interviews. We also thank Professor Renzong Qiu, Professor Huanming Yang, Dr. Yanguang Wang and Dr. Ole Doering for helpful comments on the research.


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