Design, methods, and participant characteristics of the Impact of Personal Genomics (PGen) Study, a prospective cohort study of direct-to-consumer personal genomic testing customers

Deanna Alexis Carere, Mick P. Couper, Scott D. Crawford, Sarah S. Kalia, Jake R. Duggan, Tanya A. Moreno, Joanna L. Mountain, J. Scott Roberts, Robert C. Green, Joel B. Krier, Caroline M. Weipert, Kurt D. Christensen, Lisa S. Lehmann, Peter Kraft, Mack T. Ruffin, Lan Q. Le, Jenny Ostergren, Wendy R. Uhlmann, Amy K. Kiefer, Michael PolcariChristian Peccei, K. David Becker, L. Adrienne Cupples, Clara A. Chen, Catharine Wang, Richard Sharp, Stacy W. Gray, Barbara A. Koenig, David J. Kaufman, Kimberly Kaphingst, Sarah Gollust

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29 Scopus citations

Abstract

Designed in collaboration with 23andMe and Pathway Genomics, the Impact of Personal Genomics (PGen) Study serves as a model for academic-industry partnership and provides a longitudinal dataset for studying psychosocial, behavioral, and health outcomes related to direct-to-consumer personal genomic testing (PGT). Web-based surveys administered at three time points, and linked to individual-level PGT results, provide data on 1,464 PGT customers, of which 71% completed each follow-up survey and 64% completed all three surveys. The cohort includes 15.7% individuals of non-white ethnicity, and encompasses a range of income, education, and health levels. Over 90% of participants agreed to re-contact for future research.

Original languageEnglish (US)
Article number96
JournalGenome medicine
Volume6
Issue number12
DOIs
StatePublished - Dec 3 2014

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