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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…

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.

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…

This semi-structured interview guide is intended for use with individuals diagnosed with a sex chromosome aneuploidy (SCA) or with parents of a child diagnosed with a SCA. It employs open-ended…

To understand challenges involved in the use of personal health data (PHD) in research, Bietz and colleagues created Health Data Exploration Survey Questions (Individuals) that examines the…

Bietz and colleagues created the Health Data Exploration Survey Questions (Researchers) to examine the experiences with and attitudes about self-tracking data among researchers who could potentially…

Kim, Joseph, and Ohno-Machado created the California Consumers’ Views of Data Sharing for Healthcare And Research Survey to assess technology use, opinions about electronic health records and…

This 17 minute video provides adolescents with information on the meaning, limitations, and potential benefits and risks of receiving positive and negative genomic test results.

This semi-structured interview guide provides physicians with scenarios in which adult and pediatric patients receive unsolicited genomic results and elicits their views about the need for provider…

This survey was designed to elicit responses from providers’ regarding their experiences with and perceptions about patient-generated family histories.