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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.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 21 Research Tools
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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] -
Genetic Knowledge Test (Carrier Status, Autosomal Recessive Disorders, Expanded Carrier Screening)
Year: 2020Conjin and colleagues created this brief knowledge test to measure the effect of an educational video compared to an educational text.
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 -
Semi-Structured Interview Guide: Storage and Use of Residual Newborn Bloodspots
Year: 2014Botkin 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 bloodspot
Research Population: ParentsContact: [email protected] -
Prenatal Diagnoses of Sex Chromosome Aneuploidies Interview Guide
Year: 2019This semi-structured interview guide is intended for use with individuals diagnosed with a sex chromosome aneuploidy (SCA) or with parents of a child diagnosed with a SCA.
Research Population: Adults -
Inteview Guide: Knowledge and Attitudes about Privacy and Secondary Data Use among African-Americans Using Direct-to-Consumer Genetic Testing
Year: 2022Ziegler and colleagues developed this semi-structured, qualitative, interview guide to elicit perspectives from Black/African-American participants on direct-to-consumer genetic testing.
Research Population: AdultsContact: [email protected]