Ethical Dilemmas Involved in Pediatric Bone Marrow Donor Evaluation: Demonstrating the Need for Standards of Care

• Published in: Psycho-oncology (Chichester, England) Vol. 23; p. 19
• Main Authors: Ross, Sarah, Tarquini, Sarah, Frumer-Styron, Nancy
• Format: Journal Article
• Language: English
• Published: Chichester Wiley Subscription Services, Inc 01.02.2014
• Subjects: Blood & organ donations; Bone marrow; Medical ethics; Pediatrics; Psychological tests; Quality of care; Stem cells; United States > US; Northeastern states
• ISSN: 1057-9249; 1099-1611

Stem cell transplantation has become standard treatment for a variety of diseases in children and adults. Children often serve as hematopoietic stem cell donors, most commonly for their siblings. Although a general outline of recommended criteria to be met in order for a child to serve as a donor was presented in a 2010 policy statement by the American Academy of Pediatrics, there is currently no established standard of care in regards to the psychological assessment of child donors. The purpose of this presentation is to discuss a variety of ethical dilemmas that may be present during the pediatric donor evaluation process in order to demonstrate the need for standards of care. We have completed sibling donor evaluations for a large pediatric hospital in the Northeast. Evaluations include a variety of components centered on providing psychoeducation, ruling out contraindications to participation, and ultimately obtaining child assent. RESULTS: Based on extensive clinical experience, we have compiled a list of ethical dilemmas faced while completing these evaluations, each illustrated by a brief case summary. These dilemmas are rooted in areas of development, culture, language, psychological functioning, and family dynamics. Ultimately, we aim to demonstrate the need for standards of care for pediatric bone marrow donors in an effort to provide guidance to clinicians and ensure the psychological well-being of these children. Challenges associated with establishing such guidelines will also be discussed. A standard evaluation procedure for pediatric donors would also result in an improved ability to conduct psychosocial research across hospital sites, with each hospital following a specific protocol for their pediatric patients. This may ultimately lead to multi-site studies that examine outcomes for pediatric donors. It is our hope that a standard evaluation procedure for pediatric bone marrow donors would lead to an improvement in the quality of care provided to pediatric donors, in addition to increased collaboration and discussion among providers from pediatric hospitals across the United States and internationally. None.