In defense of the American Academy of Pediatrics Policy Statement—Children as Hematopoietic Stem Cell Donors

I want to thank the editors of Pediatric Blood and Cancer for asking me to respond to 2 commentaries [1,2] regarding the new American Academy of Pediatric (AAP) statement on Children as Hematopoietic Stem Cell Donors, a statement for which I was the lead author on behalf of the Committee on Bioethics [3]. AAP statements undergo an extensive review process before they are considered by the Board. In this case, the reviewers included the AAP Section on Hematology and Oncology. I am writing this as an individual and not as a representative of the AAP, but would like to acknowledge my former committee members who made helpful comments on earlier drafts of this commentary. I also want to thank Mr. Revera for sharing his family’s story. I assume by the tone of the commentary that both his donor-child and his recipientchild are doing well. That is a wonderful outcome. I also want to thank Dr. Joffe for acknowledging his role in writing the AAP policy statement. Dr. Joffe and I worked on this statement together for over 2 years, through many layers of review by the AAP. Dr. Joffe deserves public credit for his help in developing what I will argue was and remains a valuable set of recommendations for the stem cell transplant community. Revera and Frangoul’s main objection to the AAP statement is the role of the donor advocate. They claim that the policy aims to remove parents from the process and replace them with an unknown donor advocate. The authors mischaracterize the donor advocate: It names a role whose primary function is to support potential donors and their families in the evaluation and donation process. It is not meant to substitute, but to supplement parents who may be so preoccupied with their ill child that they are willing to do anything to find a potential donor, without giving considered thoughts to the risks and benefits that the donation may pose to their other child. Nor should the donor advocate be viewed as a judge about reasonable decisions being made by parents in an intimate family. The donor advocate serves as an ally to both the donor child and his or her family, and is only empowered to prevent sibling donations in very rare circumstances. The AAP statement is meant to be quite deferential to parental authority. However, there are limits or constraints to parental authority [4], and one of those limits occur when parents need the help of third parties [5]. It is appropriate for parents to determine that their child is ready to cross the street unsupervised for the first time or to ride a bicycle in traffic because parents have obligations to protect their children but also to promote their autonomy. It is also appropriate for parents to want their healthy child to serve as a bone marrow donor for an ill sibling, even when the chances of success are remote and even when the healthy child has no emotional relationship to the ill child (see the case of Curran versus Bosze below). But to have a child serve as a bone marrow donor requires the assistance of health care providers who are also moral agents [6]. And there are situations in which it would not be appropriate for health care providers to permit a child to serve as a bone marrow, despite parental permission. None of the health care providers involved in the case of L.R. should have agreed to allow her to serve as a bone marrow donor to her half-brother A.R. who is serving time for sexual assault against L.R., despite the fact that her mother gave permission and she did not verbally object [7,8]. Clearly the case of L.R. is a negative extreme. But there are other scenarios, also rare, when doctors or other health care providers might refuse to permit a child to participate as a bone marrow donor. Such were the physicians at the University of Chicago who argued in defense of the defendants in Bosze versus Curran [9]. This case involved a man, Mr. Bosze who was the father of three-and-a-half year old twins, Allison and James Curran, with Ms. Curran and the father of three other children with three other women. One of his sons, Jean-Pierre, was ill with relapsed undifferentiated leukemia and the only chance of cure was a bone marrow transplant, described as having, ‘‘at best, optimistically, somewhere between 1 and 5 percent chance’’ [9 at 47]. Mr. Bosze asked Ms. Curran, the mother and legal guardian, to allow their children to undergo HLA testing and bone marrow transplant but she said it was not in their ‘‘best interest.’’ She noted that the children had only met their half-brother twice and thus did not have a close relationship. The Court sided with Ms. Curran, offering three criteria that must be fulfilled for a court to allow a child to serve as a stem cell donor: (i) the consenting parent must have been informed of the risks and the benefits of the procedure; (ii) there must have been emotional support available to the child from his or her caretakers; and (iii) there must have been an existing, close relationship between the donor and recipient [9]. The Court rejected Mr. Bosze’s claim because there was no existing relationship (criteria 3) and worried that without Ms. Curran’s support, criteria 2 might also not be met for the donor child. In the AAP statement, these criteria were accepted with minor language revision. The AAP also added another criterion, that there should be some ‘‘reasonable likelihood of success’’ which may also not have been met in this case given that the physician could not get Jean-Pierre into remission. The lack of an existing relationship is the same error made in a case presented by Kesselheim, Lehmann, Styron, and Joffe in Archives of Pediatrics and Adolescent Medicine [10]. In that case, parents had adopted a child who developed leukemia. The