Discover data collection instruments and related materials in the Research Tools database. Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.
1 - 10 of 11 Research Tools
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Genetic Literacy Fast Test (GeneLiFT)
Year: 2020The Genetic Literacy Fast Test (GeneLiFT) is a self-administered genetic literacy test for individuals who intend to undergo genetic screening with return of results.
Research Population: AdultsValidation(s):- Rasouly, M. H., Cuneo, N., Marasa, M., DeMaria, N., Chatterjee, D., Thompson, J. J., Fasel, D. A., Wynn, J., Chung, W., Appelbaum, P., Weng, C., Bakken, S., & Gharavi, A. G. (2020). GeneLiFT: A novel test to facilitate rapid screening of genetic literacy in a diverse population undergoing genetic testing. Journal of Genetic Counseling, 00, 1–13.
Contact: [email protected] -
CSER Phase 1: MIONCOSEQ Study Patient Vignettes
These patient vignettes, based on the experiences of real participants in the Michigan Oncology Sequencing Center (MI-ONCOSEQ) DNA sequencing study, help adults understand what to expect should the
Research Population: Adults -
CSER Phase 1: NCGENES Study Brochure
The study brochure for the North Carolina Genomic Evaluation by Next-generation Exome Sequencing (NCGENES) study includes information on what whole exome sequencing is, why the study is being condu
Research Population: Adults -
CSER Phase 1: NCGENES Incidental Information Brochure
The brochure, developed by North Carolina Genomic Evaluation by Next-generation Exome Sequencing (NCGENES), describes Whole Exome Sequencing (WES) and six types of non-medically actionable incident
Research Population: Adults -
CSER Phase 1: NCGENES "What can I learn from whole genome sequencing" Brochure
The brochure, developed by North Carolina Genomic Evaluation by Next-generation Exome Sequencing (NCGENES), includes information about whole exome sequencing (WES), the three types of incidental in
Research Population: Adults -
CSER Phase 1: The Baylor Advancing Sequencing into Childhood Cancer Care (BASIC3) Study Brochure
Year: 2012The 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.
Research Population: Parents -
Scenarios for Ethical and Legal Analysis of Genomic Data Sharing Practices
Year: 2020McWhirter and colleagues report the development and validation of 6 scenarios based on actual genomic data sharing pratices in Australia.
Research Population: AdultsValidation(s):McWhirter, R., Eckstein, L., Chalmers, D., Critchley, C., Nielsen, J., Otlowski, M., & Nicol, D. (2020). A scenario-based methodology for analyzing the ethical, legal, and social issues in genomic data sharing. Journal of Empirical Research on Human Research Ethics, 15(4), 355-364.
Contact: [email protected] -
Research Scenarios Associated with Moral Concerns
Year: 2016In the linked study, De Vries and colleagues provided participants with a description of a fictional biobank and a description of blanket consent.
Research Population: AdultsContact: [email protected] -
Social Policy Options forBiobank Consent
Year: 2016In the linked study, De Vries and colleagues provided participants with a description of a fictional biobank and a description of blanket consent.
Research Population: AdultsContact: [email protected] -
Genomic Data Governance Policy Statements
Year: 2020In the original study, Briscoe and colleagues asked participants how each of twelve, randomly ordered policies (e.g., employee code of conduct, right to request deletion of data, warrant protection
Research Population: AdultsContact: [email protected]