Tabor and colleagues developed My46, a self-guided, web-based information management system for individuals undergoing genetic testing in clinical and research settings, to enable them to choose wh
Tabor, H. K., Jamal, S. M., Yu, J., Crouch, J. M., Shankar, A. G., Dent, K. M., Anderson, N., Miller, D. A., Futral, B. T., Bamshad, M. J. (2017). My46: a Web-based tool for self-guided management of genomic test results in research and clinical settings. Genetics in Medicine, 19(4), 467-475.
The Genetic Literacy Fast Test (GeneLiFT) is a self-administered genetic literacy test for individuals who intend to undergo genetic screening with return of results.
Rasouly, M. H., Cuneo, N., Marasa, M., DeMaria, N., Chatterjee, D., Thompson, J. J., Fasel, D. A., Wynn, J., Chung, W., Appelbaum, P., Weng, C., Bakken, S., & Gharavi, A. G. (2020). GeneLiFT: A novel test to facilitate rapid screening of genetic literacy in a diverse population undergoing genetic testing. Journal of Genetic Counseling, 30(3), 1–13.
- Rasouly, M. H., Cuneo, N., Marasa, M., DeMaria, N., Chatterjee, D., Thompson, J. J., Fasel, D. A., Wynn, J., Chung, W., Appelbaum, P., Weng, C., Bakken, S., & Gharavi, A. G. (2020). GeneLiFT: A novel test to facilitate rapid screening of genetic literacy in a diverse population undergoing genetic testing. Journal of Genetic Counseling, 00, 1–13.
This semi-structured interview guide is intended for use with gene drive technology (GDT) experts. It was developed using ethical arguments identified by the authors via literature review.
This topic guide can be used to interview research participants on their perceptions of recall by genotype research, which recruits on the basis of genotype.
Minion, J. T., Butcher, F., Timpson, N., & Murtagh, M. J. (2018). The ethics conundrum in Recall by Genotype (RbG) research: Perspectives from birth cohort participants. Plos One, 13(8), e0202502.
This interview guide was developed to elicit African researchers experiences in international health research consortia; perceived benefits and risks of participation, and their recommendations for
Munung, N. S., Mayosi, B. M., & de Vries, J. (2017). Equity in international health research collaborations in Africa: Perceptions and expectations of African researchers. PLoS One, 12(10), e0186237.
Chen and colleagues developed this qualitative interview guide to explore the topic of family health history with Chinese Americans in the United States.
Chen, L. S., Li, M., Talwar, D., Xu, L., & Zhao, M. (2016). Chinese Americans’ views and use of family health history: A qualitative study. PloS One, 11(9), e0162706.
Briscoe and colleagues primed repondents ahead of a survey that assessed public attitudes toward genomic data by providing them with information about genomic databases via a 3-minute video.
Briscoe, F., Ajunwa, I., Gaddis, A., & McCormick, J. (2020). Evolving public views on the value of one’s DNA and expectations for genomic database governance: Results from a national survey. PloS One, 15(3), e0229044.
Interview Guide: Genetic Health Professionals’ Experiences with Informed Consent in Diagnostic Genomic Sequencing
This interview guide seeks to understand genetic health professionals' experiences with obtaining informed consent for diagnostic genomic sequencing from patients.
This interview guide seeks to understand the experiences of those who publicly shared their direct-to-consumer genetic testing results on the online platform openSNP.
This semi-structured interview guide explores perceptions and use of personal genomic testing (PGT).