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 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 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 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 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.
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.
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.
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.
"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.
"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.