Research Tools

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

This project evaluated simplified tools used to inform the public around the consent process. 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

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

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

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

The aim of this project is 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 data dictionary for this study outlines the structure, content, and variable definitions for the dataset.

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 data dictionary for this study outlines the structure, content, and variable definitions for the dataset.

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

REDCap data dictionary for the project "Carrier Screening Decision-making: An Experimental Study of Media Influences on Conversational Development and Outcomes." The data dictionary outlines the structure, content, and variable definitions for the study dataset.

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

The aim of this study was to develop a gaming prototype for decision making about pre-implantation genetic screening (PGS) with in vitro fertilization. The data dictionary for this study outlines the structure, content, and variable definitions for the dataset.

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

This study investigated the efficacy and impact of prenatal education about newborn screening and use of residual dried blood spots (DBS) in research. The data dictionary outlines the structure, content, and variable definitions for the study dataset.

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