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Families' experiences accessing care after genomic sequencing in the pediatric cancer context: “It's just been a big juggle”
Vuocolo and colleagues interviewed patients with cancer predisposition syndrome (CPS) diagnoses and follow up recommendations or their parents to identify barriers and facilitators of access to follow-up care. The authors suggest supports for the pediatric-to-adult transition process, recommendation letters to improve provider knowledge, and other actionable interventions to improve access to genomic services.
Rajagopalan, Cakici, and Bloss envision a future in which empirical ELSI research is deployed early and continuously to align the goals of publicly funded science with local, public interests.
Improving care for marginalized populations at risk for hereditary cancer syndromes: Innovations that expanded reach in the CHARM Study
Gilmore and colleagues reflect on their experiences and make several recommendations for enhancing the inclusivity of genomic medicine including expanding eligibility criteria to include those with limited family history, building and supporting a diverse research workforce, prioritizing long term relationships with patient advisors, and implementing the ARIA genetic counseling model.