The Research Tools database facilitates access to commonly used instruments for empirical ELSI scholarship.
This post-return of child genetic test results survey for parents assesses the psychosocial impact of receiving genomic findings by measuring how much participants had specific feelings such as anx
- Li, M., Bennette, C. S., Amendola, L. M., Ragan Hart, M., Heagerty, P., Comstock, B., Tarczy-Hornoch, P., Fullerton, S. M., Regier, D. A., Burke, W., Trinidad, S. B., Jarvik, Gail P., Veenstra, D. L., Patrick, D. L. (2019). The feelings about genomiC testing results (FACToR) questionnaire: development and preliminary validation. Journal of Genetic Counseling, 28(2), 477-490.
Christensen and colleagues developed a survey to enable parents of pediatric patients to set preferences for return of individual results from research on pediatric biobank samples based on disease
Christensen, K. D., Savage, S. K., Huntington, N. L., Weitzman, E. R., Ziniel, S. I., Bacon, P. L., Cacioppo, C. N., Green, R. C. & Holm, I. A. (2017). Preferences for the return of individual results from research on pediatric biobank samples. Journal of Empirical Research on Human Research Ethics, 12(2), 97-106.
The Patient Reported Utility (PRU) of Clinical Sequencing Survey asks participants to rate how useful they find nineteen outcomes of genome sequencing on a scale ranging from 1 (not at all useful)
The Patient-Initiated Actions Attributable to Genomic Testing Survey, developed by the Clinical Utility, Health Economics, and Policy (CUHEP) working group, asks adult patients to report whether th
The Follow Through on Medical Actions Attributable to Genomic Testing Survey, developed by the Clinical Utility, Health Economics, and Policy (CUHEP) working group, measures whether parents of pedi
CSER Phase 1: Informed Consent Form and HIPAA Authorization - PediSeq: The Pediatric Genetic Sequencing Project
The purpose of PediSeq: The Pediatric Genetic Sequencing Project was to identify best practices for educating patients about exome and genome sequencing, determining the sequencing data relevent to
CSER Phase 1: Consent Form - ClinSeq : A Large-Scale Medical Sequencing Clinical Research Pilot Study
This consent form for adult patients or parents of minor patients (with child assent) includes standard consent language and the ability for participants to “opt out” of learning about genome seque