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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.
11 - 20 of 25 Research Tools
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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] -
Semi-structured Interview Guide, Recall by Genotype (RbG) Research
Year: 2018This topic guide can be used to interview research participants on their perceptions of recall by genotype research, which recruits on the basis of genotype.
Research Population: AdultsContact: [email protected] -
Family Health History Interview Guide
Year: 2016Chen and colleagues developed this qualitative interview guide to explore the topic of family health history with Chinese Americans in the United States.
Research Population: AdultsContact: [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] -
Sharing Power with Communities in Priority-Setting for Health Research Projects: A Toolkit
Year: 2021Pratt developed Sharing Power with Communities in Priority-Setting for Health Research Projects (a set of four worksheets and a companion document available in this database), following consultatio
Research Population: AdultsContact: [email protected] -
Interview Guide: Experiences of Sharing Direct-to-Consumer Genetic Testing Results
Year: 2018This interview guide seeks to understand the experiences of those who publicly shared their direct-to-consumer genetic testing results on the online platform openSNP.
Research Population: Adults -
Semi-structured Interview Guide: Experiences with Personal Genomic Testing
Year: 2020This semi-structured interview guide explores perceptions and use of personal genomic testing (PGT).
Research Population: Adults