@article{6c236d687efc480f9da8bb29f73b58c4,
title = "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",
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.",
author = "{the PGen Study} and Carere, {Deanna Alexis} and Couper, {Mick P.} and Crawford, {Scott D.} and Kalia, {Sarah S.} and Duggan, {Jake R.} and Moreno, {Tanya A.} and Mountain, {Joanna L.} and Roberts, {J. Scott} and Green, {Robert C.} and Krier, {Joel B.} and Weipert, {Caroline M.} and Christensen, {Kurt D.} and Lehmann, {Lisa S.} and Peter Kraft and Ruffin, {Mack T.} and Le, {Lan Q.} and Jenny Ostergren and Uhlmann, {Wendy R.} and Kiefer, {Amy K.} and Michael Polcari and Christian Peccei and Becker, {K. David} and Cupples, {L. Adrienne} and Chen, {Clara A.} and Catharine Wang and Richard Sharp and Gray, {Stacy W.} and Koenig, {Barbara A.} and Kaufman, {David J.} and Kimberly Kaphingst and Sarah Gollust",
note = "Publisher Copyright: {\textcopyright} 2014 Carere et al.",
year = "2014",
month = dec,
day = "3",
doi = "10.1186/s13073-014-0096-0",
language = "English (US)",
volume = "6",
journal = "Genome medicine",
issn = "1756-994X",
publisher = "BioMed Central",
number = "12",
}