Research Tools

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.

The 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). This scale, the Parental Personal Utility Scale (Parent PrU), was specifically adapted for parents of children who have undergone genomic testing.

The Perceived Caregiving Interactions and Behaviors: Malfeasance, Nonfeasance, Uplift Scales are used to examine whether levels of nonfeasance, malfeasance, and uplift are associated with the perception that a member of a familial caregiving network is under-contributing. The scales include 19 questions about caregiving interactions and behaviors. Participants name each person in their familial caregiving network and indicate which members are engaged in the specified caregiving interactions and behaviors.

The Hierarchical Mapping Technique, best described in the measures section of the validation included here, enables the collection of information about social network structure using a concentric circles diagram.

The Perceptions of Uncertainties in Genome Sequencing (PUGS) Scale was developed to evaluate perceived uncertainties in genome sequencing. The scale comprises ten items to assess uncertainties within three domains: clinical, affective, and evaluative.

Goranitis and colleagues developed the genomic utility valuation (GUV) scale to enable a standardized measurement and scoring of genomic utility based on 5 key policy priority indicators: clinical, diagnostic, economic, societal, and family utility.