This project developed and evaluated the efficacy of a game decision aid among pregnant women about prenatal screening in a randomized controlled study. 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 assessed the impact of a video and survey about expanded carrier screening on patient knowledge and decision making. 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

Rothwell and colleagues surveyed patients to assess the financial burden of 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

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

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

Rothwell and colleagues surveyed patients to assess the financial burden of 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 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.

Michie and Allyse developed five scenarios that describe existing and hypothetical interventions for symptoms of Down syndrome (DS): 1) prenatal physical intervention, 2) prenatal cognitive intervention, 3) pediatric physical intervention, 4) pediatric cognitive intervention, and 5) Adult treatment to reduce Alzheimers risk. Participants, consisting of family members of people with DS, were asked to choose whether or not they would have the intervention and explain their reasoning behind their choice.

Wonkam and colleagues designed this survey to gather information about how Cameroonian parents with SCA-affected children feel towards prenatal diagnosis and termination of an affected pregnancy.

Bukini and colleagues designed the vignette used in theis study to explore the importance of shared decision making about research participation in Ghana and Cameroon. The vignette, available in the methods section of this study, describes a hypothetical study of children with sickle cell disease. It can be used to examine whether parents would independently decide to enroll their children, or whether they whould or would seek the advice of others, including family members, community elders, etc.