Parental Perspectives on an Educational Tool for Values-Informed Biobanking Consent in Pediatric Oncology: A Pilot Project.

Abstract

Parents of children with cancer describe experiencing gaps in their knowledge and recall after providing biobanking informed consent. Following the Standards for Quality Improvement Reporting Excellence in Education Guidelines, we developed a biobanking educational website. This pilot project assessed parental perspectives on the content that was most valuable and relevant to their decision-making. Surveys and a focus group revealed that the website adequately covered the values-informed topics relevant to consent. Such educational tools have the potential to enhance interactive communication about biobanking by serving as a precursor to consent and ongoing reference to expand parents' understanding of what they have consented to.