Banking the Future: Adolescent Capacity to Consent to Biobank Research
Year: 2019
Type: article
Study design: Observational Study
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.
Source: Ethics & Human Research
DOI: 10.1002/eahr.500023
Authors: Kyle A. McGregor, Mary A. Ott
Institutions: NYU Langone Health, Indiana University School of Medicine
Language: English
Topic: Ethics in Clinical Research
Field: Medicine
Domain: Health Sciences
Open Access status: green
OpenAlex ID: W2963894428