A cross sectional study of perceived couple communication patterns and influencing factors among colorectal cancer patients.

Patients with sickle cell disease () are historically under-represented in biobanks, often attributed to a limited willingness to consent to biobanking among African American parents. The lack of inclusion of racially minoritized patients with SCD in biobanking has tended toward a monolithic assumption that this is due to medical mistrust. Biobanking is a foundational infrastructure that supports modern genetics and genomic medicine. It acts as the bridge between patient samples and the data-driven discoveries relevant to precision medicine. Disparate inclusion in biobanks risks increasing disparities, limiting generalizability, and further marginalizing communities from access to advances in personalized medicine. The purpose of this study was to learn about biobanking preferences from adolescents with SCD and parents (non-dyadic) of children with SCD to inform best practices for promoting informed consent in biobanks. Learning from this specific study cohort with an existing high participation in biobanking has potential to help inform inclusivity in biobanking. As previously described, this mixed-method study included a convenience sample of caregivers of patients with SCD (any genotype) and adolescents aged 13–18 during their routine hematology appointments. All participants had previously been approached for participation in the SCCRIP cohort study (Sickle Cell Research and Intervention Program) which has a biobank and clinical data repository. Participants on this SCDGEN study (Clinical Trial: ) completed a written survey which include five questions about biobanking (). While biobanking was not part of SCDGEN, the cohort had been previously approached for participation in the SCCRIP biobank protocol. A subset of parental participants participated in follow-up interviews. During the interviews, parents were asked to reflect and conversationally expand upon their previous answers to the survey questions. Interviews were balanced to achieve representation across our age-based clinics (infant/toddler, school age, and teen) to ensure a diversity of illness experiences and continued until thematic saturation was achieved. Factual inaccuracies were operationalized as statements made by participants that contradicted verifiable information. A fact-checking guide was created prior to coding. Interview transcripts were segmented into discrete meaning units (i.e., clauses or sentences) that expressed a single factual claim. Each meaning unit was treated as an independent analyzable item. Each factual statement was coded using a two-category scheme: factually inaccurate or accurate. The number of inaccurate statements was held as the numerator and the total number of factual statements was treated as the denominator to calculate the proportion of inaccurate statements (reported as a percentage).