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Organ Transplants and Families under the Amended Organ Transplant Law

Megumu Yokono
Assistant Professor, Faculty of Social Sciences, Waseda University

The amended organ transplant law went into full effect on July 17th. As of August 25th, three cases of organ donation have already taken place under the amended law, and the media reported that the final decision to donate organs was made by "consensus of the donor's family" in every case. As shown in this phrase, this amendment significantly increased the importance of the roles played by families in organ transplants.

Family Consent

Under the amended organ transplant law, donors' families play important parts in organ donation decision making. As a prerequisite for organ donation after brain death, the law prior to the amendment required written consent of the donor in order to donate organs following a legal declaration of the donor's brain death. In contrast, the amended law allows, along with the above procedure, donating organs after a legal declaration of the donor's brain death based on the consent of the donor's family in the case where the donor did not declare their intention about the donation.

The decision to donate organs following a legal declaration of brain death is equivalent to deciding to terminate life-sustaining treatment for the donor. This amendment, therefore, could impact not only organ donation but also decision making regarding life-sustaining treatment. In clinical medical practice, if it is impossible to confirm the wishes of patients, decisions on life-sustaining treatment are generally made based on the wishes of their families. The roles of the families in such situations, however, do not have clear and established legal basis. While the wishes of patients must be respected in healthcare decisions, there are no explicit legal rules as to who assumes the responsibility for the decisions when it is impossible to confirm the patients' wishes. In particular, there is debate over whether or not the patients' families, or anyone other than the patients, may make crucial decisions including the termination of life-sustaining treatment, and if the families may make such decisions, where the decision should be positioned in a legal context-i.e., whether the families exercise the patients' right to decide on behalf of the patients, and the families have their own rights for the decisions along with the rights of the patients; or whether the decisions should always be based on the patients' intentions and the opinions of the families merely help to ascertain them.

It is significant that the amended organ transplant law introduced the rule permitting family decisions on matters that had previously required decisions by the patients themselves, though only in the case of organ donation. In addition, it is also important that such a rule is based on the idea that the inference of patients' intentions by their close family members leads to respect for the intentions of the patients. We need to pay close attention to the resulting impacts on clinical medical practice and theoretical arguments regarding decision making on life-sustaining treatment.

Family members as organ donors

The amended organ transplant law also introduced rules on declarations of preferential organ donation for donors' relatives. Now donors may express their intentions, only in writing, that their organs be preferentially donated to their relatives, in addition to their intentions of donating organs. This will make it more probable that patients are provided with organs from their family members not only in the case of living donor transplants but also deceased donor transplants.

Most organ transplant cases in Japan have been living donor transplants. Particularly in the case of organs which are suitable for transplants from living donors and which are in high demand from many patients-such as kidneys and livers-living organ transplants have been increasing even since the organ transplant law allowed organ transplants from brain-dead donors in 1997. Even if organ donation from brain-dead donors increases after the amendment, living organ transplants will continue to account for the majority of organ transplant cases.

Living donor organs may only be donated from patients' relatives in principle, because transplants between relatives tend to be associated with higher compatibility and better outcomes, and because relatives are presumably more likely to voluntarily donate organs, eliminating the sale of organs and forced organ donation. However, it has also been pointed out that the selection of donors from such a limited pool puts potential donors under pressure hindering their free decision making. Moreover, living organ donation entails removal of healthy organs from donors, in some cases causing health problems. Living organ transplants are totally dependent on donors' families assuming heavy burdens both mentally and physically.

In Japan, the organ transplant law was enacted after an extremely long argument about organ transplants from brain-dead donors. The intensity of the argument was unprecedented in the world. On the contrary, living organ transplants seldom become a subject of social discussion from the viewpoint of their ethical and legal acceptability, and there are no legal regulations governing them. The society might have regarded living donor transplants as an issue only for patients and their families, paying little attention to them.

The wishes of the family: the only issue?

The expanded roles of families under the amended organ transplant law might sometimes lead to the realization of the families' genuine hopes. On the other hand, too much emphasis on families' wishes would obscure the reality and problems attendant in organ transplants. When a living donor died after a liver transplant in 2003, it was reported that the surgery was performed in accordance with the fervent wishes of the donor (the patient's mother) in spite of the risks. When it comes to the recent cases of organ transplants based on families' consent under the amended organ transplantation law, criticism has been directed toward the Japan Organ Transplant Network who emphasized the families' wishes while declining to disclose the detailed processes involved in donations because the families wished to keep the matters private. If the emphasis on families' sentiments disguised the real situation of brain-dead donor transplants, society could once again regard transplants as only relevant to patients, donors, and their families-losing sight of these issues.

Organ transplants rely on family ties

The amended organ transplant law assumes that family members share such close spiritual bonds that they can infer the intentions of the others, and that family members will wish to donate organs to their relatives preferentially. Given that it is not so difficult to live without family ties these days, we should be aware of the difficulty and vulnerability of a scheme based on such assumptions about families.

Megumu Yokono
Assistant Professor, Faculty of Social Sciences, Waseda University

[Brief Biography]
Professor Yokono graduated from the School of Law at Waseda University in 1997. She completed the master's course and withdrew from the doctoral course in the Graduate School of Law at Waseda University. She has been a research associate at the School of Law at Waseda University and a postdoctoral fellow with the Japan Society for the Promotion of Science before assuming her current position in 2006. Professor Yokono specializes in Medical Law and Anglo-American Law.

Bioethics in the Practice of Neonatal Care: Guidelines for Discussion [Shinseiji-Iryou Genba no Seimei-Rinri: "Hanashiai no Gaidorain" wo Megutte] (co-authored, Medicus Shuppan, 2005); and Pediatric Care and Bioethics: Reading Materials [Kodomo no Iryou to Seimei-Rinri: Shiryou de Yomu] (co-authored and co-edited, Hosei University Press, 2009).