Rethinking transplantation between siblings

Parents and physicians often subject ill children to treatments that have inherent risks. The basic justification for placing these children at risk is the reasonable expectation that they will benefit. But sometimes parents and physicians place healthy children at risk for the benefit of other children. This happens when children serve as kidney donors or bone marrow donors for their siblings. Our purpose in this paper is to criticize the standard way of thinking about these cases and to suggest an alternative. In cases of transplantation between siblings, we believe that the standard approach misconstrues the nature of the ethical problem, ignores the ethical import of family relationships, and requires an egocentric evaluation of the situation. We shall try to offer an alternative way of thinking about these cases, a way that takes seriously the ethical aspect of relationships. But before we formulate an alternative, we want to examine the standard approach. The Standard Approach The standard approach to questions about placing persons at risk is based on a ranking of the following ideas: (1) informed consent, (2) substituted judgment, and (3) best interests. In this approach informed consent is viewed as the first and best justification. Patients are to be informed about all reasonable alternatives, the expected benefits, and the significant risks; they can then decide, based on their values and attitudes, whether the benefits of a proposed treatment are worth the risks. Thus the practice of informed consent is meant to protect patients against unwanted intrusions and to give expression to the idea of patient autonomy. The practice of informed consent is meant to apply only to those who have the requisite decisional capacity. Children, or at least young children, lack the requisite ability to understand and appreciate risks and benefits and so are viewed as incompetent to give valid consent. Although the understanding that is needed may be specific to the proposed treatment, and the degree of understanding may be relative to the risk-benefit ratio of the proposed treatment, it seems clear that young children are not competent to consent to tissue transplantation. So the transplantations must be justified in terms other than the informed consent of these children. In the standard approach the next line of justification is in terms of substituted judgment, an attempt to decide in the given circumstances as the incompetent person would if he or she were competent. Thus a substituted judgment is really a conditional judgment: if the person were competent, then he or she would decide such and such. The application of this doctrine to the case of children is quite problematic. Young children are not formerly competent adults who have lost their capacity to decide. They are young people who have never been competent, and may not have well-formed values and outlooks. Thus it is not even clear what it would mean to decide as the young child would if the child were competent. When it is not possible to use the notion of substituted judgment because the person was never competent (or because not enough is known about the preferences of the person who was once competent to yield a determinate answer), then the conventional approach turns to the idea of the person's best interests. Simply put, on the best interests standard the agent decides to do what is best for the person. Thus, on the conventional approach, the justification for placing a young child at risk must be in terms of that child's best interests. Tissue transplantation between young children must then be shown to be in the recipient's and the donor's best interests. Some transplantation programs have taken the standard approach a step further by requiring that an impartial child advocate be appointed for the donor.[1] Of course, when cases are disputed in court, a guardian ad litem is appointed and charged with representing the child's interests. …