Research Tools

"What are the Risks?" is a 3 minute video for American Indian and Alaska Native participants of the All of Us Research Program (All of Us) that describes the various risks involved with learning and sharing DNA results. All of Us is a health research program, funded by the National Institutes of Health, with the goal of studying health data from over one million people in the United States, including individuals traditionally underrepresented in health research.

Cho 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 genomics.

Ziegler and colleagues developed this semi-structured, qualitative, interview guide to elicit perspectives from Black/African-American participants on direct-to-consumer genetic testing. Topics include participants' experiences with ordering DTC GT kits, using the kits, and receiving their DNA test results. Questions also explore the participants' knowledge of genetic data privacy (for example, if they know whether DTC GT companies could sell their data) and ask how they would feel if their genetic data were used in different scenarios (for example, by a healthcare facility for medical research or a DTC GT company.)

Timmins and colleagues created this semi-structured interview guide to explore parents' perspectives on expanded newborn screening through genomic sequencing. Questions explore parent's attitudes towards screening in different scenarios and for different conditions, privacy concerns, preferences for receiving information, and making informed choices.

Carver and colleagues developed the Public Understanding and Attitudes towards Genetics and Genomics (PUGGS) questionnaire to assess college students' knowledge of genetics, including gene-environment interaction. The questionnaire also explores opinions and beliefs regarding genetic determinism and genetic testing and other technologies.

The 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 classification decisions about other people. The survey includes demographic questions (including race, country of origin, political party affiliation, political views, gender, age, education, income, etc.) as well as belief in genetic essentialism, racial attitudes, and beliefs about the relevance of genetic ancestry testing in medicine measures. Respondents are randomized to several treatments (survey modules that differ by context, gender, ancestry, and genetic ancestry test results). Following a task introduction, respondents are shown a profile and directed complete racial classification tasks. Also see the Black-White Race Morphs Research Tool in this database.

The Black-White Race Morphs Research Tool is a resource comprised of 240 morphed images combining same-gender Black and White face images. The research tool uses original images from the Chicago Face Database (CFD) and morphs ten models each of CFD Black females, White females, Black males and White males. Also see the How Does Genetic Ancestry Testing Affect Perceptions of Race? Conjoint Survey Instrument in this database.

This consent form was used for the Utah Genome Project. The form describes the specific protected health information that would be collected for the study, how the information would be used, and how the information would be protected.

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The aim of this project was to gain understanding of the implications of alternate concepts of genetic causation for theoretical work in behavior genetics and for interventions and therapies arising from behavior genetics research. The REDCap codebook for this study outlines each data element of the survey, including the questions administered to the participants.

University of Utah Center of Excellence in ELSI research (UCEER). Grant number(s): RM1HG009037

Case and colleagues developed an educational intervention (CRiTICS) for providers' communication of a positive prenatal genetic screening result. The REDCap codebook for this study outlines each data element of the survey, including the questions administered to the participants.

University of Utah Center of Excellence in ELSI research (UCEER). Grant number(s): RM1HG009037