Codebook: ENLITE - Evaluating the Benefits and Limitations of Next Generation DTC

Kilbride and colleagues explored public perceptions and knowledge of direct-to-consumer genetic testing. 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

Codebook: Willingness to Pay (WTP)

Rothwell and colleagues used a willingness to pay (WTP) survey to evaluate the values individuals place on the information provided by a genetic counseling consultation providing incidental findings for cancer causing genes. 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

Codebook: Video Informed Consent Information (VICI) for Residual Newborn Specimen Research

Rothwell and colleagues developed a video and an app for obtaining consent about allowing newborn blood spots (NBS) to be used as biospecimen resources for biobanking. They conducted focus groups and interviews with three diverse communities to determine (a) how well the consent tools worked and (b) participant familiarity with NBS. 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

Codebook: UCEER - SDSU Mapping the Genetics Communication Circuit

This project brought together health communication experts with diverse areas of expertise to investigate connections among clinical encounters, family decision making conversations, and information networks. 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

Codebook: Meaning of Screening

This project developed and evaluated the efficacy of a game decision aid among pregnant women about prenatal screening in a randomized controlled study. 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

Codebook: Assessment of the Reading of the Informed Consent Play

Rothwell and colleagues assessed the short-term impact of the play "Informed Consent" by Deborah Zoe Laufer (a fictionalized look at the controversy over specimens collected from the Havasupai Tribe for diabetes research in 1989) on perceptions of trust, willingness to donate biospecimens, and attitudes toward harm and privacy among the medical and undergraduate students, faculty, and the public in the Intermountain West. The REDCap codebook for this study outlines each data element of the survey, including the questions administered to the participants.

Codebook: Assessment of a Video and Survey about Expanded Carrier Screening

This study assessed the impact of a video and survey about expanded carrier screening on patient knowledge and decision making. 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

Codebook: The Influence of Genetic Testing on Redirection of Care in the NICU

Mowery and colleagues conducted a descriptive study characterizing the influence of genetic testing on redirecting care for neo-nates. 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