At the beginning of each section, I will return to the issue of brain-death and organ transplantation, because this was the first bioethical issue that Japan had to face in the 1960s. In reading about how this issue was handled in Japan, the reader will obtain a better understanding of “The Japanese Path.”

2.1 Enactment of the Organ Transplantation Law (OTL)

The movement to legislate organ transplantation from brain-dead persons began in May 1968. However, the first heart transplantation surgery, performed 3 months later (the famous Wada heart transplantation incident), received harsh criticism from the media, healthcare professionals, and legal experts, because what constituted brain-death diagnosis was not clearly established. There was also suspicion about the status of the donor, and a lack of data around activity on the electro encephalogram. Professor Juro Wada of Sapporo Medical University was charged with a criminal offence (although this ended in non-prosecution). After that the movement toward the legislation for organ transplantation as well as social debate on this issue came to a standstill for some time.

The debate surrounding brain-death and organ transplantation were reignited by the press in the early 1980s, creating a major discussion involving academia, the religious sphere, the government, media, and civil society. Against this backdrop, the development of effective immune-suppressants such as cyclosporine yielded higher success rates in allogeneic organ transplantation surgeries. The debate, which began with the question, “is brain-death the same as human death?” opened up the field for active debate on Japanese perspectives on life, death, and the status of dead bodies, with a large number of publications ensuing. Some of this work was groundbreaking. For example, the clinical or research use of brain-dead bodies “neomort,” first introduced by Willard Gaylin in 1974 [1], was further discussed in Japan [2, 3].

On April 24, 1997 in the Lower House of the Japanese Diet, the original bill was voted on and passed, 320 for and 148 against. Then, a revised version passed in the Upper House with 181 for and 62 against on June 17, 1997. That same day, the bill was approved in the Lower House with 323 for and 144 against [4, 5].Footnote 1

In what follows I will focus on the characteristics of Japan’s OTL. This law is created through a compromise between those opposed to the notion that brain-death is not affirmed as human death and those who approved of organ transplantation from a brain-dead body. This law does not clearly specify that brain-death is human death. When all of the conditions necessary for organ transplantation from a brain-dead body (that is, the individual’s personal consent to organ donation, and family consent) are met, only then is a legal brain-death evaluation conducted, after which organ extraction and transplantation from a brain-dead body is allowed [4].

In Japan, it is common for different ways of being to merge, as is the case with Shinto and Buddhism (syncretism). This is a religious phenomenon in which Shinto (indigenous to Japan) and Buddhism (from abroad) have combined to form a single faith system. Beginning in the Nara era (710–794 A.D.), Shinto gods were celebrated at Buddhist temples and jin-guji (places of worship that combined a Buddhist temple with a Shinto shrine) were erected at Shinto shrines.

In this way, Japanese culture often takes two different philosophies or ways of being and fuses them. Thus a resolution is created, but each unique characteristic that is included may also lose some of its intrinsic qualities. Hereafter, I refer to this as a “fusion/transformation” strategy.

Another characteristic of Japan’s OTL is the possibility for the family to veto the individual’s decision to donate his or her organs. In addition to the potential donor’s expressed intent to donate, the law also requires the family’s consent. Notably, the 1997 law only considered the expressed intent to donate of those 15 years or older as valid.

2.2 The First Organ Transplant from a Brain-Dead Donor

There was a considerable period of time between the declaration of the first OLT and the first organ transplant. This was partly due to the fact that the 1997 OTL required both a donor’s written consent and the family’s consent. The family’s surrogate consent alone was not sufficient for organ transplantation. It also granted the patient or the patient’s family veto power over a diagnosis of brain-death [5]. Thus, the 1997 OTL was one of the strictest “opting in” laws in the world at that time. Many predicted that the strictness of this law would prevent transplantation using organs from brain-dead bodies from becoming a common practice. However, in accordance with the enactment of the OTL in October 1997, The Japan Organ Transplant Network (JOTN) was established, through which registration for heart and liver transplants was initiated, transplant coordinators were appointed, donor cards were made available at many places, and transplant facilities were developed. Nonetheless, Japanese people remained hesitant.

An important Japanese cultural idea that I would like to focus on next is what I will call the “village society.” The village society is a form of communitarianism [see 7, 8 for some Western examples], and is a closed and exclusive society within which people are mutually monitored and regulated. In a village society, an act that is considered most challenging is one that disrupts and damages internal homogeneity. For example, if a person were to present an opinion that differs from that of the community, this might be viewed as a betrayal. In this way, individualism in Japan is diluted due to the influence of this traditional form of Japanese culture.

In this form of communitarian culture, if some prominent community members were to be opposed to the idea of organ donation, even though the law had permitted it, becoming the first donor or donor’s family would involve some courage.

According to the JOTN, there have been several cases in which potential donors hold valid donor cards, but no organ procurement is performed because the family’s consent could not be obtained [9]. Even physicians and organ transplant facilities were also not quite ready to be “the first in Japan,” especially knowing that this was a socially contentious issue.

It was against this sociocultural backdrop that the first organ transplant from a brain-dead donor was carried out in Japan [9]. Not surprisingly there was an enormous amount of media attention. Recipient information was supposed to have been kept confidential, and yet detailed information on the donor’s sex, age, disease, hospital of admission, and the names of organs transplanted and hospitals where those procedures were performed were disclosed. Essentially, a show was put on for the “village society.” This excessive media reporting is thought to have increased anxiety for future donors and their families. It also became a tremendous burden on transplant facilities.

2.3 Twenty years After the 1997 OTL Enactment

As discussed above, the original OTL was extremely rigid, requiring the donor’s expressed intent to donate in advance as well as the family’s consent. Following its enactment, only 86 cases of organ donations from brain-dead donors took place between 1997 and 2010. In response to these low numbers, the government revised the law in 2010, so that it (1) incorporated an “opt-out” policy that enabled an organ to be extracted with family consent alone if the individual’s wishes could not be clarified, and (2) legalized organ transplantation from a child under the age of 15 years with family consent. As a result, the number of organ transplants from brain-dead donors increased under the revised OTL, to 413 cases between 2010 and 2017.

The question remains: how do we interpret this increase? How can we measure its significance? According to the International Registry in Organ Donation and Transplantation (IRODaT) [10], of the 99 registered countries, Japan had an extremely low number of donors in 2015, relative to other countries (Fig. 2.1) [11]. Twenty years have passed since the 1997 enactment of the original OTL, and 9 years since the original OTL was revised. Why have the numbers of brain-dead donors remained so low in Japan?

Fig. 2.1
figure 1

Updated Worldwide Actual Deceased Donors (PMP) in 2015. Data were collected from the 2015 database of the International Registry on Organ Donation and Transplantation. Updated data in 2015 were available for 61 of the 99 registered countries. From among these 61 countries, we selected the same countries listed in the figure of the same database, Worldwide Actual Deceased Donors (PMP) 2013 for the sake of comparison. Four countries are missing data from 2013. Accordingly, data from 57 countries are shown in this figure

Full size image

My colleagues and I performed an in-depth secondary analysis of information published on the JOTN webpage data from the Fact Book 2016 of Organ Transplantation in Japan published by the Japan Society for Transplantation [11]. Data from the JOTN webpage comprised results from seven polls conducted by the Cabinet Office between 1998 and 2013 and compared responses to the same questionnaire items. Content analysis was performed to organize the data from 13 families of brain-death donors.

In 2015, livers (8066 from living donors; 318 from brain-dead donors) and kidneys (26,440 from living donors; 649 from brain-dead donors) were the most common organs for transplant. As of June 2017, 615 were registered on the waiting list for a heart, and 318 were registered for a liver. Those registered for a kidney numbered 12,145, and 324,986 were on kidney dialysis.

Secondary analysis of results from polls targeting 3000 individuals from across Japan aged >20 years conducted in 1998 and 2013 revealed some changes in responses over the 15 years under analysis. An increase was noted among those who had declared their intent to donate, especially among younger people. General knowledge about transplantation had increased and the feeling of resistance had decreased. Answers such as “My family will not approve,” “I want to leave it up to my family,” and “I have no interest” remained steady. In 2013, >90% of the younger group responded that they would respect the family’s wishes if they were in writing. However, regarding family consent, those who responded “I will not” [provide family consent] comprised roughly half of all age groups.

As to content analysis, I have selected seven relevant codes extracted out of 13 that relate to the Japanese attitude toward organ transplantation [11]. With regard to family perspective (wherein code names are in {} and typical narratives are in parentheses ()), the codes and narratives are as follows: {family view: to leave it up to the family: omakase} (I want to leave this decision up to my family), {For our own (the family’s) sake} (At the very least it might comfort the family), and {Disservice from family/relatives} (I was hurt by insensitive words from those around me). Perspectives from surrogate decision-makers were as follows: {Cannot make the decision} (Even though I know that I need to respect her wishes, I was unable to make that decision with my daughter still alive in front of me), {Worry/regret afterward} (some donor families still wonder if that was the right thing to do), in addition to {They are living in the recipient} (I can tell the children that part of their mother’s body is still living in this world), and {Not my problem, not interested} (just someone distant from me living a very different existence). All of these reflect the tentative attitude in Japan toward (brain-dead) organ transplantation.

Among the issues given as reasons to oppose organ transplants from brain-dead patients during the 1990s, the following five issues seem to have diminished in importance: (1) Distrust in medicine; (2) Uncertainty about brain-death criteria; (3) A lack of infrastructure; (4) Opposition from traditional religions; and (5) Excessive press coverage.

In sum, a comparison of the 1998 and 2013 polls reveal changes over 15 years, including (1) increased proportions of those with donor cards and those declaring their intent to donate; (2) decreased number of those who opt out, due to less resistance toward organ donation; (3) increased general awareness; and (4) increased proportion of those who respect the desires of family members and embrace the concept of “respecting the individual’s wishes” among the Japanese people.

Interestingly, in response to the question, “If there is no indication of the individual’s intent, would you as a family give your consent?” approximately half of all age groups stated, “I would not.”

Notwithstanding, the number of brain-dead organ donors remains extremely low when compared to other countries. Our analysis revealed three sociocultural reasons for this. What follows is the summary of our findings.

  1. 1.

    Views on corpses (gotai manzoku: “5-body satisfaction,” defined as an intact body with a head and four limbs, indicating no defective body parts). This perspective on the body originates from Buddhism. Although Japan is largely a secular country, many Japanese are considered “funeral Buddhists,” in that many who would not ascribe to this religion still desire a Buddhist funeral. For this to occur, a corpse must be cremated in a state of gotai manzoku. Many Japanese worry that they may not be able to pass into a place of rest without all their organs. Compared to Christian cultures, where the emphasis is more on the soul than the dead body, those who embrace the concept of gotai manzoku tend to approve of organ donation far less readily.

  2. 2.

    Perspectives of the family. Japan has always been a family oriented society, and strong family bonds persist. In medical care settings, families play important roles in deciding treatment objectives for patients, and patients often leave important decisions up to their families (omakase). The patient’s body is not just his/her own, but is regarded as one part of a larger whole. Reasons such as {Cannot make judgments}, {Worry/regret afterwards}, or “without gotai manzoku I cannot go to the afterlife (cannot be put to rest)” are likely to explain why some families do not consent to organ transplantation. This trend is not limited to the elderly but is observed consistently throughout all age groups.

  3. 3.

    Characteristics of Japanese altruism. The concept of “volunteer” in Japan embodies a slightly different nuance than that in other countries. That is, in Japan, the act of a “volunteer” does not necessarily represent altruism for which no return is expected. While Japan is often viewed as a communal society, in reality, a substantial amount of self-interest is also evident, along with a fairly low level of commitment to others in the community. The average individual in Japanese society has an “inner circle” comprising family and relatives, and all others are considered exactly that: “others.” As long as one’s inner circle is well, then others do not matter; if there is a problem, it is someone else’s to fix. We noted that a certain proportion of individuals responded that they had no interest in organ donation, which may be a byproduct of this form of “altruism.”

The views on corpses, families, and this specific type of altruism appear to be deeply rooted. Thus, despite secularization and outward changes in family structure, that which forms the deepest layers of the Japanese spirit persists, crossing generations. I believe that these reasons explain the lack of increase in the number of brain-dead donors, even 20 years after the enactment of the OTL. These numbers will not change easily.

2.4 Is Japan Moving in the Right Direction?

The laws and the necessary environment are already in place in Japan, and yet our cultural perspectives on corpses, on family, and the concept of altruism among Japanese people have not changed. In addition, the requirement of family consent also works against organ donation, which also means that Japanese people’s wishes are not being honored posthumously. The lack of cadavic organs has been addressed to some degree through living donor organ transplants, but heart donations cannot come from living donors. The deficiency in hearts available for pediatric transplant is particularly critical.

As of August 2018, only 24 pediatric heart transplants (<15 years old) had been performed in Japan, despite the fact that the 2010 revisions of the Japan’s OTL legalized transplants from brain-dead donors under 15 years of age with surrogate consent. The number of overseas pediatric heart transplants to Japanese patients was 67 (5.15 patients per year) between 1998 and 2010, and 31 (4.43 patients per year) between 2010 and 2016 after the 2010 revision of the OTL. There is evidence that nearly all overseas pediatric heart transplants in the USA are Japanese patients. Even after the Istanbul Declaration (2008), the 2010 WHO Global Consultation on transplant tourism, and the 2010 revisions to Japan’s OTL, which enabled transplants from child donors under 15 years old, no marked changes have been noted in the yearly number of Japanese pediatric patients undergoing heart transplants overseas.

For this reason, in December 2017, the government targeted pediatric heart patients who could undergo transplants overseas and decided to put in place a policy that would provide partial coverage through the national public health insurance system. On December 22, 2017, the Japanese Ministry of Health, Labor and Welfare (MHLW) issued a notice of a policy in support of transplant tourism. It decided to pay approximately JPY 10,000,000 (about USD 100,000) from the national public health insurance for each patient who underwent transplant surgery overseas. The money could be used toward any purpose except for the purchase of organs, which is prohibited by Japan’s OTL.

My colleagues and I performed a critical ethical analysis based upon political philosophy [12]. We found the most promising justification of this policy was to be found in liberal egalitarianism based upon John Rawls’ “Difference Principle,” in which inequalities are to be addressed to “the greatest benefit of the least advantaged” members of society.

However, it is doubtful that “The Difference Principle,” which focuses on the least advantaged, or the “best interests” of (only Japanese) patients, can fully serve as grounds for such justification, to the extent of violating international rules. The issues are as follows: those awaiting transplantation may not be the least advantaged compared to others with chronic conditions. Secondly, this policy infringes upon the opportunity of patients in other countries to access health care and might cause international inequalities surrounding health care access. Therefore, advocating only for the best interests of a limited number of Japanese patients does not offer enough reason to violate international rules.

It would not be strange then, if this policy were to be condemned internationally. Because transplant tourism is, as above, an act which infringes upon the rights to access health care of people from other countries with the same shortages of organs.

Responses vary about Japanese patients undergoing transplants elsewhere. As stated above, we published a critique of this practice in 2018 in a major transplantation journal [12]. There were not many strong responses from Japan. However, outside Japan, there were some strong responses. The Director of The Japan Society of Transplantation replied as follows:

To Members of The Japan Society for Transplantation

December 22, 2017

Director, The Japan Society for Transplantation

This particular system applies to children who will undergo heart transplantations in the USA who were allotted to the “overseas transplantation cases” in order to save lives. …….This is neither organ trade nor industrialism, but rather transplantation at the mercy of US citizens, in which Japanese national health insurance supports Japanese patients who pay the same medical care fees as US citizens. (Translated from the original; author’s abbreviations and emphasis)Footnote 2

That said, as the Director of The Japan Society for Transplantation, I feel both deeply apologetic to the pediatric patients in the US awaiting heart transplantations and helpless acknowledging that Japan cannot provide enough pediatric hearts to cover their own transplantation cases.

If Japanese people wish to use organ transplantation, then they have no other alternative but to increase their own numbers of brain-dead donors. Japan is facing a choice: do we value traditional beliefs (perspectives on corpses, familism, our own altruism) or do we invest in a strategy to increase the number of brain-dead donors which would require changes in perspective?

2.5 Living Donor Organ Transplantation

When considering organ transplantation in Japan, we must also consider organ donation from family members. Living organ donation has increased in Japan, perhaps because of the scarcity of organs from brain-dead donors. When I was the Chair of the Ethics Committee of Kyoto University Faculty of Medicine, I interviewed donors and recipients for living organ transplants immediately prior to transplant surgery, in order to obtain final confirmation of their wishes, as a third party not included in the medical team. The interview required them to check the boxes to confirm many items, such as “Were you coerced in any manner by other family members or relatives?” (Table 2.1) [13]. I also confirmed that they knew that they (the donor) could withdraw if they wished to do so, even on the morning of the surgery.

Table 2.1 Interview checklist for donors of living related liver transplantation
Full size table

On May 4, 2003, a liver donor died following a procedure performed at Kyoto University Hospital. This was the first official donor death recorded from among approximately 2300 living related liver transplantations performed in Japan. The donor was a mother in her late 40s who donated the right lobe of her liver to her adolescent daughter suffering from liver cirrhosis caused by congenital biliary atresia. After the donation, the liver function in the mother deteriorated rapidly. In January 2003, the mother succumbed to liver failure after an unsuccessful domino liver transplant from a donor with a metabolic disease. She died without regaining consciousness. Histologic examination of the donor liver revealed that the donor had nonalcoholic steatohepatitis (NASH), a rare disease with a poor prognosis [14, 15].

Since then at Kyoto University Hospital, it has become mandatory to confirm that the donor has been informed of the possibility of his or her own death as a worst-case scenario. In fact, as the Chair of the Ethics Committee, I was the one who instructed the medical team about informing the donor candidates that there had been a case in which the donor died. Interestingly, during my interviews with the living donor candidates, they responded that they were indeed aware of this fact; however, the manner in which they responded implied that the likelihood of a donor death was very low (one in several hundred).

I have heard numerous narratives from donors and recipients of living related organ transplantations during the interviews conducted to confirm informed consent. I noted some hesitancy when donors are asked to check the box that stated that they are not being forced to become a living donor. When I asked them, “Is the intent to donate your liver of your own will?” They all responded, “Yes.” However, when they were asked how they came to decide to become a living organ donor the stories became both long and complex.

At least three patterns of informed consent have been developed using qualitative analysis that are relevant here [16]. “Unconditional Consent” denotes agreement to donate one’s organs without any feelings of reservation; a donor hopes to save a family member’s life. Within this category, a donor may occasionally be overzealous, resulting in not hearing accurately issues relating to informed consent. “Pressured Consent” describes a donor who feels implicit pressure from others or, from his or her own conscience, to donate. This pressure ultimately overrides any fear the candidate might have toward donation.

“Ulterior-Motivated Consent” defines a donor who has an ulterior motive and donates purely for reasons that have nothing to do with unconditional love for one’s family. Ulterior-motivated consent is not necessarily monetary, but also relates to psychological reward. For instance, a spouse may offer his or her organ in hopes of patching up a failing marriage.

Another qualitative study using grounded theory revealed the decision-making processes of donors in adult-to-adult living donor liver transplantation [17]. The central theme of this model was “having no choice” and consisted of four codes: (1) priority of life, (2) only living donor liver transplantation, (3) for family, and (4) only me. The model comprised five stages: (1) recognition, (2) digestion, (3) decision-making, (4) reinforcement, and (5) resolution. “Digestion” and “decision-making” described donors’ experiences of “reaching a decision;” “reinforcement” and “resolution” stages described those of “facing transplantation.” (Fig. 2.2) [17].

Fig. 2.2
figure 2

Features of the decision-making model of “having no choice”

Full size image

Familism, a closed society, and a unique sense of altruism all materialized in various forms through the informed consent process and narratives of each of the donors. Further, living organ donations by anonymous donors reveal the particular characteristics of altruism described above. The Japan Society of Transplantation guidelines do not prohibit anonymous donors. However, one survey reported that the number of members of the Japanese Liver Transplantation Society who would accept friends and strangers as donors was extremely low. By contrast according to a report from the University of Toronto, following the success of the first living liver transplant from an anonymous donor in 2005, over 1000 individuals inquired; of these, 29 were tested and 12 actually donated organs [18]. This would never happen in Japan.

In Japan, where familism is dominant, family donors are relatively easy to come by, and living organ transplantation has developed quickly, partly compensating for small numbers of other categories of donors. National health insurance covers living organ transplantation surgery. For some time to come, living organ transplantation, and not organ transplantation from the brain-dead, will likely continue to be the main transplantation option in Japan. However, the question remains: “How far should a culture or social value be able to drive a particular medical act, and what ethical issues need to be addressed therein?”

Addendum

Organ Recycling

There is one very unique aspect of how Japanese people view organs. They perceive them as having a sense of inheritability. As the JOTN website states: “They are living in the recipient” and “I can tell her children that part of their mother’s body is still living.” The emotions contained in these statements are very different from those inherent in the simply utilitarian statement is that, as a person no longer needs their organs, they will pass them on.

In an article on organ reuse [19], my colleagues and I argued that organ recycling endangers the personal identity of the recipient. One issue that was not addressed in that particular article is the perspectives of the donor and their family, not just the perspective of the recipient. We state: “…the organ will inevitably contain its own unique history. This means that the organ will be shouldered with some form of inherent memory, which would form what might be called a ‘pseudo personality.’” However, regardless of the body in which the organ lives viewing this issue from the perspectives of the donor and the family rather than the recipient’s highlights the fact that it was originally the donor’s organ. Thus for the donor family, it will always be a part of someone they loved. In this regard, organs that have been passed on to others do not have a “pseudo personality.” For the donor’s family, the organ still retains the genuine personality of the donor, and thus some cases of organ recycling do not create major ethical issues. The organ of their loved one is living on in the body of someone else. In fact, knowing that someone else may live on for that much longer may even offer peace of mind to the donor’s family with regard to the recycling of this organ.

In response to a paper discussing the same issue in the USA, we presented a hypothetical thought experiment using a case in which a live kidney donor is in a car accident and now requires a kidney [20]. We ask if it is possible for the kidney that was already offered to a recipient to be returned to the donor, and whether this is ethically permissible. The researchers in the USA argue that it is ethically impermissible to impose the risk of dialysis on the recipient. (It is important to note here that in the USA, the prognosis for transplantation is far better than that with dialysis.) They add that the donor with one kidney who donated an organ through living transplantation would be bumped up significantly on the brain-dead transplantation waiting list, and since this individual would likely receive an organ in a short time, there is no need for the kidney that had been donated to be returned to the original donor. However, Japan has excellent results with dialysis and the wait is extremely long for brain-dead transplants. Finally, unlike brain-dead transplants, living organ transplantations are directed donations. Therefore, we argued that it may be permissible to allow one to sign a contract that preemptively specifies that if one were to develop the need for an organ in the future, the kidney recipient could return the organ that was originally donated, instead of becoming a dialysis patient with a severely restricted QOL. The differences between countries this scenario reflects, a prevailing view in Japan that ownership of the organ is still present. This emotion and feeling of inheritability is very common and might also lead to differences in thinking about altruism.