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. 2018 Oct;13(4):391-401.
doi: 10.1177/1556264618782231. Epub 2018 Jun 14.

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

Erin D Paquette  1   2 , Sabrina F Derrington  1   2 , Avani Shukla  2 , Neha Sinha  3 , Sarah Oswald  1 , Lauren Sorce  2 , Kelly N Michelson  1   2
Affiliations

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

Erin D Paquette et al. J Empir Res Hum Res Ethics. 2018 Oct.

Abstract

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.

Keywords: assent; biobank; biorepository; informed consent; research ethics.

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Figures

Figure 1
Figure 1
Screening and Enrollment for Adolescent and Young Adult Participants Response rate = 20/47 = 42.5% among eligible adolescents and young adults. Response rate for corresponding parent interview study = 75/192 = 39.1%. Full parent screening and enrollment data is available from authors.
See this image and copyright information in PMC

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