@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 = "Funding Information: The PGen Study is supported by the National Institutes of Health (NIH) National Human Genome Research Institute (R01-HG005092). DAC is supported by the Canadian Institutes of Health Research (Doctoral Foreign Study Award) and acknowledges the mentorship of her doctoral advisor at the Harvard School of Public Health, Professor Peter Kraft. RCG is also supported by NIH U01-HG006500, U19-HD077671 and R01-HG002213. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Center for Research Resources, the National Institutes of Health, or the Canadian Institutes of Health Research. Members of the PGen Study at the time of publication are as follows: Robert C Green, Joel B Krier, Caroline M Weipert, Sarah S Kalia, Kurt D Christensen, Lisa S Lehmann, Jake R Duggan, Harvard Medical School and Brigham and Women{\textquoteright}s Hospital; Deanna Alexis Carere, Peter Kraft, Harvard School of Public Health; J Scott Roberts, Mack T Ruffin IV, Lan Q Le, Jenny Ostergren, University of Michigan School of Public Health; Wendy R Uhlmann, Mick P Couper, University of Michigan; Joanna L Mountain, Amy K Kiefer, Michael Polcari, Christian Peccei, 23andMe; Tanya A Moreno, K David Becker, Pathway Genomics; Scott D Crawford, Survey Sciences Group; L Adrienne Cupples, Clara A Chen, Catharine Wang, Boston University; Richard Sharp, Mayo Clinic; Stacy W Gray, Dana-Farber Cancer Institute; Barbara A Koenig, University of California San Francisco; David J Kaufman, Johns Hopkins University; Kimberly Kaphingst, University of Utah; Sarah Gollust, University of Minnesota. 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",
}