Parental Knowledge and Decisional Satisfaction Across Genomic Sequencing Consent Processes in Pediatric Cancer

To determine whether transitioning from a two-visit consent process led by an expert consenter to a decentralized model of consenting using an educational video and a clinical care provider translated into sustained decisional satisfaction and comparable levels of understanding about genomic sequencing for cancer predisposition.

A total of 150 parents of children with cancer agreed to participate in this study approximately 4 weeks (±2 weeks) after a consent conversation for genomic sequencing using a decentralized model to assess their genetic knowledge and decision satisfaction. Results were compared with a cohort of parents (n = 121) consented with an expert consenter using a two-visit process consisting of an informational session followed by knowledge reinforcement 5 weeks (±3 weeks) after diagnosis.

Among parents in the decentralized consent process, 94% recalled providing consent. However, 53% could not recall who conducted the consent conversation. Less than half (44%) recalled reviewing a copy of the consent form, and only 17% viewed the educational video. Overall, parents endorsed consenting to sequencing as the right choice (mean 4.4/5-point Likert) without decisional regret (1.5 of 5). Parents who consented through the decentralized process did not significantly differ in genetic knowledge from the baseline preconsent genetic knowledge assessment for the comparison sample. Only 56% of parents who consented through the decentralized process answered at least 75% of the knowledge questions correctly (P < .001), compared with 82% of parents who consented through the expert consenter model.

While the decentralized consenting processes translated into lower knowledge scores, parents maintained high levels of decisional satisfaction. Further research is warranted to maximize knowledge exchange and ensure values-aligned consent in decentralized models.