Ethical considerations of using a single minor donor for three bone marrow harvests for three HLA‐matched siblings with primary immunodeficiency

Abstract

Allogeneic hematopoietic stem cell transplantation is curative for primary immunodeficiencies. Bone marrow from an unaffected human leukocyte antigen (HLA)‐identical sibling donor is the ideal graft source. For minor donors, meaningful consent or assent may not be feasible, and permission from parents or legal guardians is considered acceptable. Adverse events, albeit extremely small, can be associated with bone marrow harvest in pediatric donors. Donor safety concerns potentially increase with multiple bone marrow harvests. Very little is known about multiple bone marrow harvests from pediatric donors. We describe the ethical considerations and clinical decision‐making in an unusual clinical situation where three patients with the same primary immunodeficiency were HLA identical to one another and their younger sibling, who underwent bone marrow harvests three times between 1.3 and 4 years of age, resulting in successful transplantation for all three patients. We hope that this experience will provide guidance to providers and families in a similar situation.

Mapping ethical, legal, and social implications (ELSI) of preimplantation genetic testing (PGT)

“…An interesting suggestion was the need to make sure that the child's wish is not solely motivated by the therapeutic purpose [73,74]. Empirical research (12 articles) included reports of task forces producing ethical guidelines aimed at protecting the future interests of the donor child-to-be [14,111],analysis of real-life case studies [115]; and a few articles capturing patients' views, attitudes, and beliefs, in a few countries, concerning practices and ethical issues of PGT-HLA [65,116,117].…”