Beyond mistrust: Diverse biobanking preferences among parents and adolescents with sickle cell disease

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 between 13 and 18 years (n = 100) completed a written survey that included 5 questions about biobanking, and a subset of them 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 = .0237). Both groups expressed support for allowing their samples to be used in research beyond SCD (parents: 75.0%; adolescents: 79.0%; P = .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 = .967). Altruism supporting participation (78%) and mistrust constraining participation (62%) 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 exists. 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.