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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.
81 - 86 of 86 Research Tools
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Genetic Genealogy Experiences Survey
Year: 2022Guerrini and colleagues designed the Genetic Genealogy Experiences Survey to gather information about the experiences of users of genetic relative-finder services offered by direct-to-consumer gene
Research Population: AdultsContact: [email protected] -
ELSI Research Methods Questionnaire
Year: 2023Cho and colleagues created this questionnaire to understand the research methodologies currently being used in the study of the ethical, legal, and social implications (ELSI) of genetics and…
Research Population:Contact: [email protected] -
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] -
Interview Guide: Diverse Parental Perspectives of the Social and Educational Needs for Expanding Newborn Screening through Genomic Sequencing
Year: 2022Timmins and colleagues created this semi-structured interview guide to explore parents' perspectives on expanded newborn screening through genomic sequencing.
Research Population: AdultsContact: [email protected] -
How Does Genetic Ancestry Testing Affect Perceptions of Race? Conjoint Survey Instrument
Year: 2022The Conjoint Survey Instrument is a survey instrument developed for the study “How Does Genetic Ancestry Testing Affect Perceptions of Race?” The study explores how respondents make racial classifi
Research Population: AdultsContact: [email protected] -
The Parental Personal Utility Scale (Parent PrU)
Year: 2024The Personal Utility Scale (PrU) asks participants to rate how useful they find nineteen outcomes of genome sequencing on a scale ranging from 1 (not at all useful) to 7 (extremely useful).
Research Population: Adults, ParentsValidation(s):Turbitt, E., Kohler, J. N., Brothers, K. B., Outram, S. M., Rini, C., Sahin-Hodoglugil, N., Leo, M. C., & Biesecker, B. B. (2024) The Parent PrU: A measure to assess personal utility of pediatric genomic results. Genetics in Medicine, 16(1), Article 100994.
Contact: [email protected]