pp. 149-151 in Human Genome Research and Society
Proceedings of the Second International Bioethics Seminar in Fukui, 20-21 March, 1992.

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

Copyright 1992, Eubios Ethics Institute All commercial rights reserved. The copyrights for the employees of the US Government, are subject to other copyright arrangements. This publication may be reproduced for limited educational or academic use, however please enquire with Eubios Ethics Institute.

The urgent ethical problem in China

Nianhu Sun,
Professor, Dept. of Obstetrics & Gynecology, PUMC Hospital, Beijing, CHINA

In China, clinicians are working hard to enhance perinatal care, genetic counseling and prenatal diagnosis. In medical centers we have prevented delivery of many congenital malformed fetuses. It is worthwhile for carrying out the "one family - one child policy" of the society. But due to lack of ethical policies these results will be limited to only the medical centers. It is still a long distance to go to extend these works in the whole society. Conflicts always happen when the fetus was diagnosed as a malformed fetus. As people become more knowledgeable, early and mid trimester prenatal diagnosis seems to be more easily accepted by the people than before.

The ethical problem is should the couple make the decision to abort or to carry to term a fetus with a malformation or genetic disorder. Though there was no consensus in the world, 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. For example, in our prenatal diagnostic service we had prenatally diagnosed 420 malformed and genetically diseases fetuses of pregnant women, and 98% of the couples asked for abortion. Because they know if the malformed fetuses were born there'll be more difficult to deal with and their only hope is that the next pregnancy can be prenatally diagnosed and will be a healthy normal fetus. When one of the couple with bad reproductive history was diagnosed as a carrier of a translocation, they'll frankly ask for your help for reproductive options and when they should do prenatal diagnosis. But there were a few couples who will break their marriage. In our service it's 3/55 couples. It's not so much as in the Western world. I think this is because of good traditional culture. The couples will be even more faithful to each other in such circumstances and help each other including overcoming the burden of prenatal diagnostic procedures for reaching their goal to get a healthy fetus at last.

But there are great ethical confusions present when the newborn was found to be a malformed and genetically diseased. What should the couples do and how should the doctors and ethical specialists give advice? There is great controversy about the future and profit of these families and society. The management was different in different families and no one will blame them by moral or psychology or sociology, there is only sympathy. For example, in our service there were 102 couples who delivered a malformed baby, 90 were in out patient clinics in the period 1987-1990, and 14 were delivered in our obstetrical ward in the year 1991.

Among these 90 malformed babies, 58 were chromosomal abnormality (Tri 21, 53 Tri 18, 4 Klinefelter, 1), 18 were severely malformed (most were NTD), 7 were congenital heart defect, and 7 were other malformations. Table 1 shows the outcome of these babies.

Among the 14 malformed babies delivered in the ward, there were 2 cases of Tri 21, 4 of long bone and palangal abnormality, 5 of cleft lip+palate, 2 of hypospadias, 1 of atresia of oesophagus. The outcome of those babies were as follows: 8 cases died in the newborn period (2 trisomy 21, 5 cleft lip+palate, 1 atresia oesophagus) 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 effect was unsure, it was too expensive. In another 6 cases the babies were taken care of by parents or grandmothers.

Table 1: Outcome of 90 malformed babies

Columns across the page: Disorder: Number born; Number of deaths (Newborn period); (0-6 years by pneumonia); Alive;

Trisomy 21: 53; 28; 18; 7
Trisomy 18: 4; 3; 1; 0
Klinefelter: 1; 0; 1; 0
Sever malformation: 18; 16; 1; 1
Congenital heart disease: 7; 1; 3; 3
Other malformations: 7; 0; 6; 1
Total: 90; 48; 30; 12

There were different opinions around the management of these babies. For these severely malformed babies, most families didn't do genetic counseling and prenatal diagnosis, therefore they were in great shock when the doctor told them that the baby was malformed. They regretted, and blamed themselves. What they should do is a very sensitive question that no one can answer directly. But analysing the results above, most couples preferred to face the scientific fact, to save energy and money, and wait for the next pregnancy. Some families (25/53) of the trisomy 21 babies chose to raise the baby die to humanity or religious reasons, but 18 of these 25 lost them due to pneumonia.

For the mildly malformed babies, the parents took care and did their best to raise these babies.

There were six cases that especially attracted my attention, including one atresia oesophagus and five cleft lip+palate. The parents had consulted and asked for surgery. But the charge would be very expensive and the result cannot be guaranteed. The cleft palate babies must wait for 2-6 years. In this period the feeding problem will be very difficult, so not one got treated. Another phenomenon is that the young generation usually think of the rule of advantage of family, society, the legal dividing of resources of society, and the rule of cost/benefit. According to some bioethicist's opinions, treatment that is futile should not be provided, because in China one must take economics into account more than in the Western world. The medical cost of the technology for neonatal treatment is very expensive. It cannot be afforded by the income or workers or physicians. The cost of neonatal intensive care will run the parent into debt for several years or even a decade. From the social point of view, medicine in China is regarded as a social institution, therefore the physician not only has responsibility to the patient but also to the society How to save the limited resources and to use them in more urgent and effective cases, to save the patient and take into account the values and happiness of the family. That's why the physicians will not insist on treating a newborn with serious birth defects. This view is easily accepted by the young generation. Therefore they'll persuade the parent to give up treating these malformed babies. The old generation, around the 70-80 year old group, will support the decision to treat these babies due to traditional culture, religion and Confucianism.

Here is a story, the father of the newborn with a missing forearm, at first planned to treat the baby by spending 20,000 yuan. His friend persuaded him to give up trying to raise the baby, because for a malformed baby there were too many difficulties and it needed much money to be spent. His grandma was against the decision. They argued for seven days. At last he asked for the physician's opinion, but the physician couldn't give any answer. One day the grandma came and picked up the baby then went to her own house. She said "I'll take care of this baby. You can't visit him, you don't have the right because you'll be the executioner". Another example is a 34 year old lady who delivered a newborn with the features of Down's syndrome, so the chromosome analysis was done immediately. The newborn had jaundice then was sent to neonatal intensive care. Four days later the chromosome data proved to be trisomy 21. The couple decided to give up raising the baby. They asked the physician to leave the baby in the ward, but they didn't get agreement. Then the husband carried his wife home and prosecuted the hospital for failing to do prenatal diagnosis and their having to spend a lot of money to rescue the newborn. Still this problem is not solved.

In closing, I will mention the impact on parental decision making of the one child per family policy. The majority of people do not want treatment for their seriously defective newborns. In addition to financial reasons, parents want a healthy strong baby. The views of physicians mirror those of the parents. The majority favour letting seriously defective newborns die. The economically different conditions as well as social, cultural and political factors lead Chinese to have different views about neonatal medical ethics than Western people.

This is the important ethical problem we face now. To solve this, we need to investigate ethical policy to combine with our national situation. We are very young in this field. We hope that the friends here will give us good suggestions.

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