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
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Author
Carere, Deanna Alexis
Couper, Mick P
Crawford, Scott D
Kalia, Sarah S
Duggan, Jake R
Moreno, Tanya A
Mountain, Joanna L
Roberts, J Scott
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https://doi.org/10.1186/s13073-014-0096-0Metadata
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Carere, Deanna Alexis, Mick P Couper, Scott D Crawford, Sarah S Kalia, Jake R Duggan, Tanya A Moreno, Joanna L Mountain, J Scott Roberts, and Robert C Green. 2014. “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.” Genome Medicine 6 (12): 96. doi:10.1186/s13073-014-0096-0. http://dx.doi.org/10.1186/s13073-014-0096-0.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. Electronic supplementary material The online version of this article (doi:10.1186/s13073-014-0096-0) contains supplementary material, which is available to authorized users.Other Sources
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4256737/pdf/Terms of Use
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