Abrams and colleagues designed the Genetics Literacy Survey to gather information about how the public understands genomics and applies their knowledge in everyday scenarios beyond medical settings
Abrams, L. R., McBride, C. M., Hooker, G. W., Cappella, J. N., & Koehly, L. M. (2015). The many facets of genetic literacy: Assessing the scalability of multiple measures for broad use in survey research. PLOS ONE, 10(10), e0141532.
- Abrams, L. R., McBride, C. M., Hooker, G. W., Cappella, J. N., & Koehly, L. M. (2015). The Many Facets of Genetic Literacy: Assessing the Scalability of Multiple Measures for Broad Use in Survey Research. PLOS ONE, 10(10), e0141532.
Lowe and colleagues developed a questionnaire containing two scenarios in which misattributed paternity is incidentally discovered, possible courses of action for the doctor in each scenario, and a
Lowe, G., Pugh, J., Kahane, G., Corben, L., Lewis, S., Delatycki, M., & Savulescu, J. (2017). How should we deal with misattributed paternity? A survey of lay public attitudes. AJOB Empirical Bioethics, 8(4), 234–242.
The PIGSR is a brief instrument that enables adult respondents the ability to express their preferences or opt out of getting secondary results.
Brothers, K. B., East, K. M., Kelley, W. V., Wright, M. F., Westbrook, M. J., Rich, C. A., Bowling, K. M., Lose, E. J., Bebin, E. M., Simmons, S., Myers, J. A., Barsh, G., Myers, R. M., Cooper, G. M., Pulley, J. M., Rothstein, M. A., Wright Clayton, E. (2017). Eliciting preferences on secondary findings: the Preferences Instrument for Genomic Secondary Results. Genetics in Medicine, 19(3), 337-334.
Hooker and colleagues designed the Genetic Literacy and Comprehension (GLAC) measure to assess research participant familiarity with eight commonly used genetic terms and concepts (genetic, chromos
Several study sites in the third phase of the electronic MEdical Records and GEnomics (eMERGE) Network implemented protocols to enable research participants to choose the type of secondary results
Hoell, C., Wynn, J., Rasmussen, L.V., Marsolo, K., Aufox, S. A., Connoly, J. J., Freimuth, R. R., Kochan, D., Hakonarson, H., Harr, M., Holm, I. A., Kullo, I., Lammers, P. E., Leppig, K. A., Leslie, N., Myers, M. F., Sharp, R. D., Smith, M. E., Prows, C. A. (2020). Participant choices for return of genomic results in the eMERGE Network. Genet Med, 22(11), 1821–1829.
Christensen and colleagues developed a survey to enable parents of pediatric patients to set preferences for return of individual results from research on pediatric biobank samples based on disease
Christensen, K. D., Savage, S. K., Huntington, N. L., Weitzman, E. R., Ziniel, S. I., Bacon, P. L., Cacioppo, C. N., Green, R. C. & Holm, I. A. (2017). Preferences for the return of individual results from research on pediatric biobank samples. Journal of Empirical Research on Human Research Ethics, 12(2), 97-106.