Biobanking in the Pediatric Critical Care Setting

Adolescent/Young Adult Perspectives

Erin Daksha-Talati Paquette, Sabrina Fraser Derrington, Avani Shukla, Neha Sinha, Sarah Oswald, Lauren Sorce, Kelly N Michelson

Research output: Contribution to journalArticle

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.

Original languageEnglish (US)
Pages (from-to)391-401
Number of pages11
JournalJournal of Empirical Research on Human Research Ethics
Volume13
Issue number4
DOIs
StatePublished - Oct 1 2018

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Intensive care units
Pediatric Intensive Care Units
Pediatrics
Critical Care
young adult
Young Adult
parents
adolescent
comprehension
Parents
Research
Interviews
participation
interview

Keywords

  • assent
  • biobank
  • biorepository
  • informed consent
  • research ethics

ASJC Scopus subject areas

  • Social Psychology
  • Education
  • Communication

Cite this

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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.",
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Biobanking in the Pediatric Critical Care Setting : Adolescent/Young Adult Perspectives. / Paquette, Erin Daksha-Talati; Derrington, Sabrina Fraser; Shukla, Avani; Sinha, Neha; Oswald, Sarah; Sorce, Lauren; Michelson, Kelly N.

In: Journal of Empirical Research on Human Research Ethics, Vol. 13, No. 4, 01.10.2018, p. 391-401.

Research output: Contribution to journalArticle

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