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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.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 - 9 of 9 Research Tools
-
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: Baylor Advancing Sequencing into Childhood Cancer Care (BASIC3) Germline Sequencing Form
Year: 2014This form is for physicians to record demographic and clinical information about a patient to facilitate laboratory interpretation of whole exome sequencing results.
Research Population: Adults, Children -
Consent to Share Genetic and Health Information, Clinical Genome Resource (ClinGen)
Year: 2017This one-page consent form helps to faciliate consent and promote broad genomic data sharing in the clinical setting.
Research Population: AdultsContact: [email protected] -
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] -
8 Consent Scenarios for a Precision Medicine Cohort Study
Year: 2016These eight consent scenarios that describe consent and data sharing arrangements were used to assess respondents' opinions of the conduct of a precision medicine cohort study on genes and env
Research Population: AdultsContact: [email protected]