Botkin and colleagues created this semi-structured interview guide to uncover what prospective parents are interested in knowing about the practice of retaining residual newborn screening bloodspots by state newborn screening programs for various purposes (e.g., quality assurance, biomedical research, and forensic applications). The guide contains seven interview questions to ask prospective parents about newborn screening/residual samples.

Goldenberg, Dodson, Davis, & Tarini created two scenarios to assess parents’ interest in whole-genome sequencing (WGS) for newborns. Participants were either given a scenario in which WGS was offered through a state newborn screening or a scenario in which WGS was offered in a pediatrician's office.

This parent consent form was approved by the Institutional Review Board for the Baylor College of Medicine and Affiliated Hospitals for use in the Incorporation of Genomic Sequencing into Pediatric Cancer Care Study. The purpose of the study was learn how to report and use clinical exome sequencing test results for childhood cancer patients.

The GEmS can be used to assess the genomic healthcare empowerment of parents (e.g., the meaning of a diagnosis for their child, emotional management of the process, their confidence in utilizing the information, etc.) related to the conduct of genomic sequencing for diagnostic purposes in their children in both research and healthcare settings.

This patient consent form was approved by the Institutional Review Board for the Baylor College of Medicine and Affiliated Hospitals for use in the Incorporation of Genomic Sequencing into Pediatric Cancer Care Study. The purpose of the study was learn how to report and use clinical exome sequencing test results for childhood cancer patients.

The study brochure for the BASIC3 Study, funded by the NHGRI, is an easy to read description of the study purpose, eligibility requirements, and study procedures. It also offers a basic explanation of how genetics relates to cancer.

This parent consent form was approved by the Institutional Review Board for the Baylor College of Medicine and Affiliated Hospitals for use in the Incorporation of Genomic Sequencing into Pediatric Cancer Care Study. The purpose of the study was learn how to report and use clinical exome sequencing test results for childhood cancer patients.

This questionnaire was developed for use in the BASIC3 study. It collects demographic and health information from parents about their child.

This questionnaire was developed for the BASIC3 study. It collects a detailed family history of cancer from parents about their child.

This questionnaire for parents was developed for the BASIC3 study. It collects demographic and health information, measures numeracy and genetic literacy, and records parent preferences for making decisions about the care of their child.