ANENCEPHALIC ORGAN TRANSPLANTATION IN NAGOYA

The recipient of a renal transplant from an anencephalic baby was an 8-year-old girl. In early 1981, she had been screened by the school health program which periodically performed a urine test for protein. Due to the high level of urea nitrogen in her blood as well as her severe anemia, she was admitted to Shakai Hoken Chukyo Hospital in Nagoya, where she was diagnosed as suffering from rapidly progressive glomerulonephritis. In early October, 1981, she became uremic, and by October 21st she was given renal hemodialysis. As there were no live kidney donors available, she was placed on the waiting list for a cadaver renal transplant since her parents were ABO incompatible. On December 11th an anencephalic baby weighing 2000 grams was born at Nagoya University Hospital after 36-weeks gestation. The medical team obtained a consent for kidney donation from the anencephalic baby's family (i.e., the father of the baby, who received a full explanation describing the baby's clinical situation and prognosis).
The renal transplantation was performed by the physicians in the Department of Obstetrics and Gynecology of Nagoya University Hospital. That evening, according to one reporter (Miwa, 1988, p. 169), the attending physicians maintained that they had confirmed the death of the anencephalic baby by applying the criterion of total cessation of heartbeat. In his clinical report, one attending physician mentioned that he judged renal transplantation as the optimal treatment for the 8-year-old patient's terminal kidney deficiency (Tsuzuki, 1984a). Since there are very few cadaver donors available in Japan compared with European and North American countries, Japanese physicians have decided to utilize anencephalic neonates as organ donors even for patients who are not infants.

PHYSICIANS' ATTITUDE TOWARD ANENCEPHALIC NEONATES

At the time the medical report was written, medical experts were very optimistic about the usefulness of anencephalic neonates as possible sources of organ donation. Dr. Oshima, in a recent interview with Nikkei Medical Magazine, said that anencephalic infants should be permitted to serve as organ donors, since Japanese physicians are obliged to treat critically ill infants whenever they appear in the clinic (Miwa, 1988). However, his opinion had changed slightly due to the compromised quality of anencephalic donors' organs, and he expressed a less than optimistic attitude regarding anencephalic organ donation. Originally, Dr. Oshima thought that organ donation from cadavers would remain very rare in Japan due to the absence of brain-death criteria for declaring anencephalic infants dear. (The incidence is 1 per/1000 live births.)
There had been no official public and/or medical guidelines until January 1987, when the Japanese Society of Obstetrics and Gynecology addressed the use of organs from dead fetuses and dead newborns:

The Ethics Committee on Research and Clinical Practice has deliberated at length on the ethicality of and limits to the use of organs from aborted and stillborn fetuses and dead neonates in research. In light of the social and moral implications of the issue, Society members are advised to observe the following guidelines. 1. Regardless of the stage of gestation, the provisions of the Autopsy Law (Shitai Kaibo Hozon Ho) must be observed in the handling of dead fetuses and neonates. 2. The use in research of organs from dead fetuses and neonates should be limited cases where no other research method exists and the benefits from such research are expected to be extremely great. 3. In principle, research using organs from dead fetuses and neonates must be performed by a physician; all those who undertake such research, including collaborators, must be fully aware of its unique nature and social implications. 4. Those who wish to use organs from dead fetuses and neonates in research must fully explain the purpose of the research to the mother and the father (or legal guardian) beforehand and obtain their consent. Furthermore, the privacy of the fetus or neonate and their parents must be fully respected. The clinical treatment of living fetuses and neonates for research purposes, however, may be conducted only in cases where such treatment is considered certain to improve the prognosis, and the consent of the mother and the father (or legal guardian) has been obtained.

Dr. Shinagawa, who in chairing the Society's Ethics Committee on Clinical Research was active in formulating these guidelines, mentions that the Committee discussed anencephalic neonates as sources for organ provision. He concludes that the issue is too complex and difficult to be encompassed by the present guidelines (Miwa, 1988, p. 170).

RECENT DEVELOPMENTS CONCERNING BRAIN DEATH IN JAPAN (1988)

In the anencephalic organ donor case discussed above (Nagoya, 1981), lack of cadaver organs was due to the Japanese public's rejection of brain death criteria for declaring patients dead. On January 12, 1988, the Bioethics Council of the Japan Medical Association (which includes two physicians, two lawyers, and one expert in each of molecular biology, philosophy, cultural anthropology, literature, and industry) issued its final report on brain death and organ transplantation. The main points made were the following:

1. Brain Death (i.e., irreversible dysfunction of the entire brain) would be recognized as the death of an individual in addition to the traditional absence of heartbeat (circulation, pulsation, and respiration). 2. Minimum standard of brain death would be based on the standard adopted by the Special Task Force on Brain Death within the Ministry of Health and Welfare (whose chairperson is presently Dr. Kazuo Takeuchi). 3. The determination of Brain Death by brain-death criteria would be provided by physicians who respect the patient's and/or family member's wishes evidenced by a truly informed consent. 4. Determination of death by applying whole-brain-death criteria would be justified socially and legally if it (1) is grounded in the consent of the patient, (2) is determined by appropriate methods, and (3) is carried out by a physician in accordance with the guidelines of the Japanese Medical Association. 5. The time of death would be recorded no later than 6 hours after the initial determination of brain death. 6. Organ transplantation would be performed according to the guidelines of the Japanese Transplantation Society, which requires providing a full explanation for a free, uncoerced, and informed consent by the donor, the recipient, and the recipient's family members.

This final report clearly encourages organ donation by those who wish to donate organs for transplantation based on the individual's and/or his family's decisions. But the document also respects the traditional clinical criteria (e.g., heartbeat, circulation, pulsation, and respiration) for declaring a patient dead, and permits individuals and families to choose between the two criteria. Understandably, it has caused great debate among the public and the experts, as the brain death issue had already been discussed for several years. The report sought to achieve some sort of consensus within Japanese society concerning issues of life and death provoked by emerging biomedical technology. However, it did not accomplish its aim. A negative opinion on the conclusion of the report was issued by the Japanese Federation of Bar Association on July 15, 1988. And according to public opinion polls issued by the Prime Minister's Office in October, 1987, only 23.7 percent of those surveyed accepted brain death criteria, and 17.8 percent agreed to donate organs.

CONCLUDING REMARKS

As the Japanese psychoanalyst T. Doi explained in The Anatomy of Dependence (1973), in Japanese society people are encouraged to be dependent on each other and are expected to suppress egoism. In other words, Japanese society is not 'rights' oriented, as Western societies tend to be. Moreover, Japanese bioethical principles require a more subtle sense of the ways in which all living things are related to one another, based on the Buddhist notion of En (relatedness). A sharing-of-life principle, for example, would be more appropriate in a Japanese social context, than a right-to-life principle, because it affirms the values of dependent life and togetherness. The idea of sharing life with others, including all living beings who suffer, are sick or dysfunctionally aged, is viewed as a positive, creative living principle that is critical to human empathy.
This sense of relatedness of all life, along with various Buddhist strictures about the integrity of the human body, helps to explain why Japan is one of the few medically advanced nations that has not a definitive clinical standard of brain death. As a result, most kidney transplants in Japan come from living donors, and there has been only one heart transplant operation. This was done in 1968, but caused serious questions to be raised about the use of brain-death criteria to declare the donor dead. The case also raised questions about medical experts making decisions and practicing without public scrutiny.
Cases like the anencephalic neonate and the 8-year-old girl in Nagoya clearly need greater public exposure so clinical decisions in Japan's broad social context as well as among medical experts can receive the ethical, religious, and social scrutiny they deserve. Toward this end, the Bioethics Council of the Japanese Medical Association has made a meaningful contribution for at least it played a role in placing bioethical issues before the public ¹.