Research Tools

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 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 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.

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.

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.

Bukini and colleagues designed the vignette used in theis study to explore the importance of shared decision making about research participation in Ghana and Cameroon. The vignette, available in the methods section of this study, describes a hypothetical study of children with sickle cell disease. It can be used to examine whether parents would independently decide to enroll their children, or whether they whould or would seek the advice of others, including family members, community elders, etc.

Michie and Allyse developed five scenarios that describe existing and hypothetical interventions for symptoms of Down syndrome (DS): 1) prenatal physical intervention, 2) prenatal cognitive intervention, 3) pediatric physical intervention, 4) pediatric cognitive intervention, and 5) Adult treatment to reduce Alzheimers risk. Participants, consisting of family members of people with DS, were asked to choose whether or not they would have the intervention and explain their reasoning behind their choice.

The Personal Utility Scale (PrU) asks participants to rate how useful they find nineteen outcomes of genome sequencing on a scale ranging from 1 (not at all useful) to 7 (extremely useful). This scale, the Parental Personal Utility Scale (Parent PrU), was specifically adapted for parents of children who have undergone genomic testing.

Rothwell and colleagues surveyed patients to assess the financial burden of genetic testing. The REDCap codebook for this study outlines each data element of the survey, including the questions administered to the participants.

University of Utah Center of Excellence in ELSI research (UCEER). Grant number(s): RM1HG009037