Research Tools

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.

Carere and colleagues created the Baseline Impact of Personal Genomics (PGen) Study Survey to collect information about why participants chose to pursue direct-to-consumer personal genomic testing (PGT), their current health status, health conditions of relatives, current health behaviors, and other topics. This baseline survey should be administered after consumers order PGT but before they receive their results. The baseline survey used in the PGen Study is part of a longitudinal series and the first of three surveys designed to examine experiences with PGT at different points in time (baseline; ~2 weeks after results; ~6 months after results).

Carere and colleagues created the 2 Week Follow-Up Personal Genomics (PGen) Study Survey to measure experiences related to direct-to-consumer personal genomic testing (PGT) approximately 2 weeks after consumers received their results. The baseline survey used in the PGen Study is part of a longitudinal series and the second of three surveys designed to examine experiences with PGT at different points in time (baseline; ~2 weeks after results; ~6 months after results).

Carere and colleagues created the 6 Month Follow-Up Personal Genomics (PGen) Study Survey to measure experiences related to direct-to-consumer personal genomic testing (PGT) approximately 6 months after consumers received their results. The baseline survey used in the PGen Study is part of a longitudinal series and the final of three surveys designed to examine experiences with PGT at different points in time (baseline; ~2 weeks after results; ~6 months after results).

Carere and colleagues created the 6 Month Follow-Up Non-Responder Personal Genomics (PGen) Study Survey, a short 5 minute survey sent to study participants who had not responded to the 6 Month Follow-Up Survey (6 M Survey). The purpose of this survey is to give non-responders an opportunity to quickly answer the most important questions from the 6 M Survey, indicate their reasons for not responding to the 6 M Survey, and complete the original, longer 6 M Survey.

Chung and colleagues created the REVEAL Impact of Genetic Testing in Alzheimer’s Disease (IGT-AD) Scale to measure psychological impact of genetic susceptibility testing for Alzheimer disease (AD). The scale includes questions about how often participants experienced emotional responses in the past week (never, rarely, sometimes or often) after receiving genetic test results.