Research Tools

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 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

Kilbride and colleagues developed this data dictionary for the ENLITE Study. The ENLITE study explored public perceptions and knowledge of direct-to-consumer genetic testing. 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

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.

Conner and colleagues developed this interview guide to better understand primary care providers’ readiness to conduct population-based risk assessment and offer genetic testing for hereditary cancer. Study participants first completed a survey and then participated in a follow-up interview.