Authors
Meaghann S Weaver, Ambria Williams, Belinda Mandrell, Jane S Hankins, Jami S Gattuso, Abagail Cohen, Yunus Olufadi, Guolian Kang, Liza-Marie Johnson
Published in
Genetics in medicine : official journal of the American College of Medical Genetics. Pages 102635. Jun 19, 2026. Epub Jun 19, 2026.
Abstract
- To examine biobanking preferences among adolescents with sickle cell disease (SCD) and parents of children with SCD, to inform best practices for promoting informed consent.
- A purposeful sample of caregivers of patients with SCD (any genotype) (n=200) and adolescents aged 13-18 years (n=100) completed a written survey that included five questions about biobanking, and a subset participated in follow-up interviews.
Adolescents (82.0%) were significantly more willing than parents (69.0%) to grant permission for long-term sample storage (p=0.0237). Both groups expressed support for allowing their samples to be used in research beyond SCD (parents: 75.0%; adolescents: 79.0%; p=0.532). In contrast, support for the use of samples by researchers outside the home institution, conditional on appropriate privacy protections, was more limited (parents: 57.0%; adolescents: 58.0%; p = 0.967). Altruism (78%) supporting participation and mistrust (62%) constraining participation were the most frequent themes shaping participants' views. Perspectives varied widely regarding sample use, biobanking intentions, permission processes, perceived burden, storage duration, ownership, motivation, reciprocity, trust, potential harm, and privacy considerations.
Substantial diversity in biobanking preferences exist. Teams should consider offering a flexible range of consent options to respect participant autonomy and accommodate the broad spectrum of views revealed in this study.
PMID:
42318776
Bibliographic data and abstract were imported from PubMed on 19 Jun 2026.
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