%0 Journal Article
%T Biobanking in the Pediatric Critical Care Setting: Adolescent/Young Adult Perspectives
%A Avani Shukla
%A Erin D. Paquette
%A Kelly N. Michelson
%A Lauren Sorce
%A Neha Sinha
%A Sabrina F. Derrington
%A Sarah Oswald
%J Journal of Empirical Research on Human Research Ethics
%@ 1556-2654
%D 2018
%R 10.1177/1556264618782231
%X Biorepository research in children raises numerous ethical questions that are heightened in the pediatric intensive care unit (PICU) setting. We conducted a cross-sectional, interview-based study of 20 adolescent/young adult (A/YA) PICU patients and 75 parents of PICU patients to elucidate perspectives on biorepository research. A/YAs had a positive attitude toward 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/YAs and involvement of A/YAs in decisions
%K informed consent
%K assent
%K biorepository
%K biobank
%K research ethics
%U https://journals.sagepub.com/doi/full/10.1177/1556264618782231