Biobanking in the Pediatric Critical Care Setting: Adolescent/Young Adult Perspectives

Biorepository research in children raises numerous ethical questions, which are heightened in the pediatric intensive care unit (PICU) setting. We conducted a cross-sectional interview based study of twenty adolescent/young adult (A/YA) PICU patients and seventy-five parents of PICU patients to elucidate perspectives on biorepository research. A/YA had a positive attitude towards biobanking. In young adults, comprehension was higher for knowledge of a choice to withdraw and participate in the research and lower for purpose, procedures, risks and benefits of participation. All but one A/YA wanted to have a say in whether their samples would be used. Parent views on child assent were mixed; 55% of parents favored child involvement in decisions. Efforts should be made to improve comprehension by A/YA and involvement of A/YA in decisions.