Preferences Instrument for Genomic Secondary Results (PIGSR)
The PIGSR is a brief instrument that enables adult respondents the ability to express their preferences or opt out of getting secondary results. It is designed to be completed prior to testing without assistance. While initially developed for use in a study in which intellectual disability and related conditions were considered to be primary results, it possible to adapt the PIGSR to other genomic contexts.
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.