Banking the Future: Adolescent Capacity to Consent to Biobank Research

Kyle A. McGregor, Mary A. Ott

Research output: Contribution to journalArticle

Abstract

Adolescents are an important population to represent in biobanks. Inclusion of biospecimens from adolescents advances our understanding of the long-term consequences of pediatric disease and allows the discovery of methods to prevent adult diseases during childhood. Consent for biobanking is complex, especially when considering adolescent participation, as it brings up issues that are not present with general clinical research. The development and successful implementation of an adolescent capacity assessment tool applied specifically to biobanking can potentially provide researchers and clinicians with contextualized information on participants’ understanding, appreciation, reasoning, and voluntary choice for biobanks. This tool would enhance current studies looking at the role of shared decision-making in biobanking, as well as provide a formal measurement when considering decisions around pediatric and adolescent biobanking participation. This study adapted the MacCAT-CR for use with a hypothetical adolescent biobank study and examines predictors of MacCAT-CR scores on healthy and chronically ill adolescents.

Original languageEnglish (US)
Pages (from-to)15-22
Number of pages8
JournalEthics and Human Research
Volume41
Issue number4
DOIs
StatePublished - Jul 1 2019

Keywords

  • adolescents
  • biobanks
  • informed consent
  • pediatric biobank
  • young adults

ASJC Scopus subject areas

  • Health(social science)

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