Guerrini and colleagues designed the Genetic Genealogy Experiences Survey to gather information about the experiences of users of genetic relative-finder services offered by direct-to-consumer genetic genealogy companies.
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.
This survey was designed to elicit responses from providers’ regarding their experiences with and perceptions about patient-generated family histories.
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 resesarch using them, perceptions of their health status, and other topics. Please check your downloads folder for the survey after you click the link to this content.
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 use personal health data as part of their research. To access the survey, click on the supplementary materials link at the bottom of the linked article and open the downloaded file folder.
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 experiences and attitudes of early adopters of self-tracking health data. To access the survey, click on the supplementary materials link at the bottom of the linked article and open the downloaded file folder.
Morton, Bixenman, & Wellis designed this fifteen-item survey to measure blood donors' interest in participating in a hypothetical study, similar to the All of Us Research Program, which seeks diverse participants to ensure equitable benefits of precision medicine research.
Rubanovich and colleagues created the DNA Ancestry Testing Survey to examine the impact of DNA ancestry test results on perception of ethnic and racial identities. The 13 question survey was sent to study participants after they had received DNA ancestry results and isntructions on how to interpret the information. Two of the questions are open-ended and the others ask participants to choose between three responses (e.g., Yes, No, Somewhat).
Carere and colleagues created the 6 Month Follow-Up Non-Responder Personal Genomics (PGen) Study Survey, a short 5 minute survey sent to study participants who had not responded to the 6 Month Follow-Up Survey (6 M Survey). The purpose of this survey is to give non-responders an opportunity to quickly answer the most important questions from the 6 M Survey, indicate their reasons for not responding to the 6 M Survey, and complete the original, longer 6 M Survey.
Carere and colleagues created the 6 Month Follow-Up Personal Genomics (PGen) Study Survey to measure experiences related to direct-to-consumer personal genomic testing (PGT) approximately 6 months after consumers received their results. The baseline survey used in the PGen Study is part of a longitudinal series and the final of three surveys designed to examine experiences with PGT at different points in time (baseline; ~2 weeks after results; ~6 months after results).