1. Brain death and Japanese society

    The word "bioethics" appeared in the United States in the early 1970s, and spread to other advanced countries in the 1980s. Japan was no exception. Through powerful patients' rights movements and fierce debates on brain death in the 1980s, Japanese society has realized the importance of bioethical ideas and bioethical ways of thinking. Today, "informed consent" is a key concept among human rights activists in the field of medical care. At the same time, however, Japanese society seems to have showed reluctance to, for example, organ transplants from brain-dead donors.
    In this paper, I will illustrate how the Japanese have responded to newly imported bioethical ideas by examining their discourse on brain death and patients' rights. Through the analysis the reader will encounter a typical Asian response to modern "Western" medicine and culture.
First, let us take a brief look at the important events concerning brain death and transplantation in Japan. In 1967, the first heart transplant in the world from a comatose patient was performed in the Republic of South Africa. The next year, in 1968, a similar heart transplantation was performed at Sapporo Medical School by Professor Wada. The recipient patient lived for 83 days after transplantation. However, a citizens group accused Professor Wada of illegal human experimentation, and also of exercising dubious judgment with respect to the donor's (brain) death. After this incident, the phrase "heart transplantation" became taboo in Japanese society, and remained so for fifteen years.
    In the 1970s many countries and states established laws allowing transplants from brain dead bodies, we could call "brain death laws," and heart and liver transplants from brain-dead donors began to be performed frequently. Japan, though, kept silent until 1983. In that year, the Ministry of Health and Welfare established an ad hoc committee on brain death, and in 1985 the committee announced national criteria for brain death. In 1987 the Japan Medical Association declared brain death to be equivalent to the death of a human being. In 1992 the Prime Minister's special committee on brain death and transplantation likewise concluded that brain death equals the death of a human being. Despite this, however, in Japan, there has been no heart or liver transplants from a brain-dead donor since Professor Wada's case. Some patients with severe heart diseases have gone abroad, to Britain, Australia or the United States, for example, to have transplant operations there.
    Social scientists have tried to clarify why the Japanese seem to reject brain death as the definition of human death, but they [87/88] have not found persuasive scientific answers to that question (Hoshino,1993). According to opinion surveys, surprisingly, almost half of the Japanese view brain death as equivalent to human death; this figure is very similar to that of Western countries (Macer, 1992; 1993). This suggests that we should seek the reason for Japan's current rejection outside of each person's individual choice or preference regarding the idea of human death. Researchers have proposed a number of factors which may prevent the spread of transplantation from brain-dead donors. These factors are, for example, the after-effects of Professor Wada's case, scientific doubts as to the Japan criteria of brain death, distrust of physicians, the influence of traditional Japanese culture, the clash of the Japanese autopsy system with transplantation procedures (Cf. Tachibana, 1986; Morioka, 1989; Lock & Honde 1990; Nudeshima, 1991). In my personal view, all of these factors taken together create a strong barrier which have prevented the use of heart transplantation.
    I will discuss the brain death controversy again later, let us turn to the bioethics movement in Japan in the 1980s.

2. Bioethics and patients' rights

    Historically speaking, the patients' rights movement in the 1960s and 1970s in the United States was the main force lending support to the emergence of bioethics. In a sense, we can see the patients' rights movement in the U.S. as a powerful political movement which aimed to change the feudalistic medical community into a modern civil society where all people are politically equal and every rational individual has basic human rights. This is another story of modernization in the field of medical care. Bioethics has, I believe, a strong motive of modernization at its core.
In Japan, the word "bioethics" came into common use among specialists in the mid-1980s. Some interpreted it as a set of moral rules doctors should obey, and some as an academic discipline in which scholars and students debate to create tons of papers. Among those involved in the discussion, Mr.Okamura and Professor Kimura were two of the first to introduce bioethics in the early 1980s as a patients' rights movement. Kimura (1987) clearly states in his book that bioethics is a human rights movement and a process of making sound public policy.
    A process very similar to that which occurred in the United States in the 1960s began in Japan in the 1980s. The trigger was, again, the brain death controversy. Through fierce debates on brain death and transplantation, it became clear to those involved that one of the strongest factors preventing transplantation was the average person's distrust of doctors, and of Japanese medicine's feudalistic customs. In Japanese hospitals if you ask your doctor in detail about the medicine prescribed, the doctor will respond with an unpleasant expression. Sometimes the doctor may scold you and ask you to keep silent. Paternalistic forms of conduct are still widespread among Japanese doctors. One aspect of this is that, Japanese doctors often refuse to give important medical information to patients. For instance, according to the results of a survey conducted by the Ministry of Health and Welfare in 1992, only 20% of terminal cancer patients knew the fact that they had a cancer because of their doctors' decision to tell them the truth (Asahi Shimbun 8 May, 1993). In the other 80% of the cases, doctors lied to the patients, or told almost nothing about the disease.
    People call this "closed-door medicine," a system in which patients are unable to get important information about themselves, and can't say anything against their doctors. Ethics committees at medical schools are virtually closed to the public. An ethics committee is usually composed of the professors of that medical school; there are only a handful of people who are not professors of the particular university on all the 80 university medical school ethics committees in Japan.
    Through the brain death controversy quite a few people expressed great fear that in the process of the determination of brain death and transplantation no information might be given to family members, and in the worst case that the doctors might lie to family members. Some pointed out the possibility that doctors might psychologically threaten the family members if they refuse to agree to organ donations from a brain-dead relative.
    Patients' rights activists started to urge that we change our closed, feudalistic medical community into a more liberal and open society where each of us has the basic right to know medical information concerning our own body, and has the right to make important medical decisions by ourselves. They stressed the importance of "informed consent," "patients' rights," and "self-determination"; and their proposals are now gaining the approval of many people inside and outside of the hospital. For example, the Consumer Organization of Medicine and Law started its activities in 1990 at Osaka, aiming at establishing patients' rights in hospitals and completely changing old medical customs (COML 1990). Their newsletter has a circulation of 1,500, and the organization is widely supported by the people concerned.
    This movement is now beginning to change Japan's outdated, feudalistic medical community. Modernization in medical care is now underway in Japan. The goal of this modernization is to establish a European-American style of human relationships in medical care, that is to say, the idea that every patient should be guaranteed his/her basic human rights, and that the doctor-patient relationship should be based on contract. And it seems to me that a number of Japanese are being attracted to this idea.

3. The brain death controversy and cultural factors

    In light of our previous discussion, let us now reconsider the brain death controversy. We can find here a way of thinking which is opposite to the one I mentioned in the previous section. Through the brain death controversy, many scholars and journalists attempted to discover why Japanese society continued to reject organ transplantation from brain-dead donors. Some researchers thought that there was a unique feature, specific to Japanese culture, and this unique feature creates a strong cultural barrier against transplantation.
    Shohei Yonemoto (1987:14) called this "the cultural factor". He said that the Japanese had accepted almost all of the fruits of modern European medicine, but seemed to refuse technologies concerning human birth and death. He concluded that this is because "modern medicine came into head-on collision with our view of life and death, or with our view of the dead body, notions which were lurking deep within our culture". He wrote that Americans think of organs as replaceable parts, and that this way of thinking is based on traditional Western notions of mind-body dualism. The idea of brain death and transplantation thus matches the Western way of thinking. Contrasting with this, Yonemoto noted that Japanese tend to find in every part of a deceased person's body a fragment of the deceased's mind and spirit (Yonemoto, 1985: 200). He suggested that the Japanese view of the dead body may be completely different from Western views. In addition, he thought we must make clear how this cultural gap, or cultural factor, functions in our cultural systems by painstaking research from the perspective of cultural anthropology (Yonemoto,1988).
    In 1985, 520 people died when a Japanese jumbo jet crashed in the mountains. Emiko Namihira, a cultural anthropologist, investigated how the victims' family members behaved toward the dead children's or parents' bodies. She found that the bereaved families were very eager to confirm the dead family member's corpse with their own eyes, and tried hard to gather all the parts of the dead person's body as if they thought the body should be perfect. Her conclusion was as follows. Japanese think that a dead person goes to the next world as a soul. The soul has its own body, and it has senses and feelings similar to a living person. The soul hopes to come back to the house in which it lived. Part of the soul remains at the place where the accident occurred, and the bereaved family should visit the place periodically. The dead body must be perfect. If some parts are missing, the soul becomes unhappy in the next world (Namihira,1988:18-36).
    Namihira suggested that in Japan it is believed that a dead person can communicate with the bereaved family psychologically and religiously, and the sadness of the dead person's soul can affect the bereaved family members. Hence they refuse to injure the dead person's body, since it may make the dead person's soul unhappy. She insisted that this traditional [88/89] world view is still alive in Japanese minds, and it prevents the acceptance of organ transplantation from the brain dead (Namihira, 1988:61).
    Nobuyuki Kaji enlarged Namihira's idea. Kaji said that the Japanese view of the dead body is not specific to the Japanese. That world view is shared at least in East Asian countries where Confucianism once flourished. Kaji noted that the Japanese view of the dead body which Namihira pointed out resembles proto-Confucianism's view of life and death. "Proto-Confucianism" is Professor Kaji's term for the ancient Confucianism that was at the stage of shamanism. Kaji believes this shamanism must have widely existed in the East Asian region in ancient times. Hence, the transplantation problem in Japan is, according to Kaji, an expression of the clash between modern Western science and ancient Asian shamanism (Kaji,1990).
    Takeshi Umehara, a former member of the Prime Minister's special committee that wrote a dissenting opinion, has asserted in an essay that a brain-dead human being is not dead. His view is that it is alive until all the circulation of the blood stops and the body becomes cold. According to Umehara (1990), the idea of brain death and transplantation goes back to the philosophy of Rene Descartes, namely, his dualism of mind and body, and "cogito ergo sum." Umehara held that Japanese culture is based on a kind of animism which tells us that all beings in the world -- including animals, trees, and the mountains -- have souls. He concluded that the Japanese should not accept the idea of brain death based on the Cartesian world view, which has brought about this century's world wide environmental crisis.
    Interestingly, some of those who accept transplantation feel uneasy about the idea of brain death. For example, the influential journalist M.Nakajima insists that transplantation is necessary, but that the idea of brain death is unacceptable (Nakajima,1985). A draft transplantation law prepared by a citizens group argued that we don't have to define brain death as human death in order to perform organ transplants from brain-dead donors (Nakajima,1992).

4. Where should future Japanese bioethics go?

    So far I have examined some of the recent topics concerning the Japanese patients' rights movement, and the cultural factor arguments that seem to have prevailed in Japanese bioethics discourses. In this section I discuss further these topics by distinguishing the level of "phenomenon" and that of "discourse."
    First, let us look at the phenomena. As for patients' rights movement, Japanese paternalistic medical customs are gradually changing. Physicians themselves have come to use the words "informed consent" and "patients rights" more frequently than before. However, it is also true that the majority still hesitates the total truth-telling to the patients, especially in the case of cancer. As I have already noted, only 20% of the physicians said they told the truth to their cancer patients in 1992. Recent studies by Naoko Miyaji, an anthropologist, show that the most frequent responses from the physicians she interviewed were where the physicians themselves wanted to know the truth but in the case of their patients they do not tell the truth. Many physicians think that patients should live in the web of warm-hearted consideration shown by the surrounding people, and that it is a good custom that a patient leaves his/her decision making to intimate others. Miyaji surmises this as one of the reasons for the low rate of truth telling in Japan (Miyaji,1994).
    Whether Japanese medical customs are restructured on the basis of "autonomy" and "informed consent" in the future or not will depend on how much Japanese society outside hospital is going to change toward a "Western" style civil society. If Japanese society as a whole becomes truly individualistic in the future, the physician-patient relationship will sooner or later change into a contract-based one, and the complete truth-telling will be executed. Japanese society is now rapidly changing; we don't have any reliable predictions. I feel that it will become more and more individualistic, but it is unlikely that Japanese society as a whole becomes, for example, an American style one.
    Let us turn to brain-death and organ transplants. As I said earlier, a strong barrier against transplantation from brain-dead donors exists in Japanese society. In 1994 an Organ Transplantation bill was introduced at the Diet, but as soon as the bill was presented, a network against organ transplantation bill was established, collecting more than 700 signatures. Among the signature names there were such leading bioethicists as Rihito Kimura and Gen Ohi; such famous scholars as Tomio Tada, Tetsuo Yamaori, and Yoshio Kawakita; and many women feminism activists (Network 1994). Their reasons for opposition are diverse, but this signifies the negative atmosphere against brain-death and organ transplants shared among some intellectual groups.
    However, according to public opinion surveys between 1985 and 1992, the respondents who think brain-death is the death of humans always exceed these who don't think. For example, Asahi Shimbun's survey in 1992 shows that 47% for and 41% against, and NHK's survey in the same year shows that 30% for and 22% against. As for organ transplants, the number of rejection gets lower, 5-25% (Nakayama 1992).
    Here researchers fall into chaos. No one has succeeded in presenting a clear-cut theory that explains the gap between the result of opinion surveys and the loud negative voices which have repeatedly erupted at the time of the establishment of brain-death criteria(1985), guidelines for human death by Japan Medical Association(1987), and the transplantation bill this time. Public opinion surveys must be one of the basic data for bioethical discussion, but I cannot help thinking that the method of ordinary opinion survey may have crucial limitations when it comes to the matters of "life" and "death."
    My personal communications with the people concerned show that many feel that organ transplants from brain-dead donors will be resumed sooner or later, and will continue to be performed in a comparatively small scale. But before that we will have to try to destroy the existing "closed-door medicine." Without that, transplantation will never get real public support.
    As I wrote above, Japanese society is now accepting "Western" biomedicine and bioethics movement. Probably the modernization process in Japanese society will go further, but as to "individualism" and "autonomy," Japanese society will never reach an U.S.-like civil society. I think future Japanese society will be similar to that of south and/or east European countries. In this sense, bioethical guidelines from Europe will be well fitted to Japan for the coming few decades.
    Let us turn to the level of discourses. Here we have to look again at the "cultural factor" arguments I cited in the section three. Yonemoto, Namihira, Kaji, and Umehara stressed that there is a unique feature, specific to Japanese culture,and this unique feature creates a strong barrier against transplantation. However, in spite of the apparent persuasiveness of their arguments, their theories need further social scientific investigations to confirm their statements. For example, some people say the Japanese view of the dead person's body is unique, but many of them just compare Japanese folklore and "Western" ones, and draw their conclusions. However, in order to conclude that Japanese view is unique, one have to demonstrate that it is different from those of all countries outside the "West," and at the same time look closely inside the "West" to examine whether there are exceptions among Western countries. Some people say East Asia is unique. In that case they have to do the same painstaking research outside and inside East Asia.
    Instead, I want to pay attention to the reason why such cultural factor arguments had power in Japan's bioethical discourses. These arguments really have had power in the world of discourse; for instance, the media picked them up repeatedly, and their books sold well in spite that they were academic ones. Again I want to stress that having power in the world of discourse is one thing, and whether the ordinary people believe them is another. This is a very important point. Discourse is a tool of persuasion in a sense. It's like a mirror that reflects an ideal figure which you want to put to yourself.
    I correlate this with "national identity." I said earlier that bioethics movement can be seen as a kind of "modernization." For Japan, and many other Asian countries, this is a movement came from the "West." Hence, for these Asian countries, modernization and Westernization are the opposite sides of the same coin. In Japan, such modernization processes began in the late 19th century, and she succeeded in catch up with Western [89/90] countries by the 1970s. And in the 1980s and 90s, the remaining closed door was opened; the medical world started to be modernized under the flag of "informed consent" and "patients' rights." Brain-death and transplantation can also be understood as modernization in the field of medicine.
    The point is that this modernization came from the outside. This fact let people feel that their culture and the basic social systems are being forcibly modified, if I use a stronger word, raped by the "West." It is easy to imagine what do these people with such a victim consciousness try to do. They would seek from Japanese culture some sacred cultural-units which are considered to be so unique that even the strong "Western" power cannot overwhelm them. And they guard these cultural-units against the modernization, regarding them as sacred tools for maintaining national identity. In the brain-death debates, "the Japanese view of the dead person's body," " the Japanese view of the next world," and "Buddhist and/or Confucian and/or Shinto tradition" were among the sacred cultural-units.
    I think this is one of the important reasons why the cultural factor arguments were so popular in the world of discourse in Japanese bioethics, in spite that some of them lacked objective data. In connection to this, Hyakudai Sakamoto's declaration of East Asian Bioethics shares this sentiment (Sakamoto 1995). He says that "though we should learn from Euro-American bioethics much more, "our bioethics" should be based on our own culture, and, therefore, it should be somewhat different from the Euro-American ones. (p.2)" In this case, something unique is enlarged from Japan to East Asia, and he thinks that should not be modified by Euro-American bioethics. He did not think profoundly what is "we" and "our own culture" in such a vast region with various religious and economic backgrounds. It is not fruitful to use "Japan/West" or "East Asia/West" framework when discussing international bioethics. As Helen Hardacre writes, "it is no more true that everyone in the West considers their existence principally in terms of the autonomous self questing for release from the prison of relations with other people than everyone in Japan is so mired in sticky relationships that they have no access to a consciousness of personal identity. (Hardacre 1994)"
    However, this kind of cultural factor arguments might be a typical response when Asian countries accept "Western" bioethics. When Japan started to accept European civilization in the late 19th century, Japanese intellectuals advocated the importance of the attitude, "Western technique but Japanese spirit." Similar words "Western technique but Chinese spirit" were found in China at the same period. This time, at the end of 20th century, similar phenomena might be seen again in some Asian countries simultaneously.
    When I first studied bioethics in the mid-1980s, I was once possessed with the "our bioethics" syndrome just as Sakamoto has. But now I refuse that idea because it has danger of bringing about evil (enlarged) nationalism, and because it conceals diversity inside "our culture" and diversity inside our own minds.
    I have been showing the negative side of the cultural factor arguments. However, I don't necessarily think that cultural factor arguments are senseless. On the contrary, if we interpret them as an attempt to criticize modern scientific civilization in which all the people in the advanced countries, including Japan, are now dwelling, we can get fruitful insights from them.
    For example, some of these arguments stress that the essence of human being resides not only in his/her brain, but also in every part of the body, therefore, the idea that brain-death equals human death can not be true in a certain context. Of course their arguments are not so strictly constructed, but if we take this theory seriously and develop it philosophically, it may have the possibility of criticize the very basis of contemporary civilization which is inclined to see humans only as a reasoning and calculating machine made up of brain's complicated neuron-networks.
    Advanced countries, particularly the United States, are trying to construct broad transplantation networks, aiming at recycling all the possible organs and tissues from brain-dead donors. In this system, I must say, these organs and tissues are going to be regarded as mere exchangeable bodily parts -- just as cogwheels inside a clock. And this kind of social system might someday lead us to a more inhumane society in which every person is regarded as an exchangeable cogwheel of the total social system (Morioka 1994). In 1980s, brain-dead human bodies were used for medical experiments in the U.S., France, and Japan (Akabayashi & Morioka 1991). This is a logical result from the idea brain-death equals human death. We have to have an imagination to see what will be waiting for us at the end of this road. Hans Jonas once presented similar criticism (see Jonas 1980). I believe time has come to reconsider the mainstream biomedicine, as Jonas did more than 20 years ago.
    When interpreted as critics against civilization, the cultural factor arguments will be sure to provide us precious materials for thinking about our future. Bioethics includes not only making sound guidelines but also thinking about the future course of our society and civilization.

* A former and shorter version of this paper was presented at the XIXth International Congress of History of Science, 22-29 August 1993, Zaragoza.

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