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

the PGen Study

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25 Citations (Scopus)

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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Genomics
Cohort Studies
Prospective Studies
Health Education
Health Status
Industry
Health
Surveys and Questionnaires

ASJC Scopus subject areas

  • Genetics(clinical)
  • Genetics
  • Molecular Biology
  • Molecular Medicine

Cite this

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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 Sharp, {Richard R} and Gray, {Stacy W.} and Koenig, {Barbara A.} and Kaufman, {David J.} and Kimberly Kaphingst and Sarah Gollust",
year = "2014",
month = "12",
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language = "English (US)",
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AU - the PGen Study

AU - Carere, Deanna Alexis

AU - Couper, Mick P.

AU - Crawford, Scott D.

AU - Kalia, Sarah S.

AU - Duggan, Jake R.

AU - Moreno, Tanya A.

AU - Mountain, Joanna L.

AU - Roberts, J. Scott

AU - Green, Robert C.

AU - Krier, Joel B.

AU - Weipert, Caroline M.

AU - Christensen, Kurt D.

AU - Lehmann, Lisa S.

AU - Kraft, Peter

AU - Ruffin, Mack T.

AU - Le, Lan Q.

AU - Ostergren, Jenny

AU - Uhlmann, Wendy R.

AU - Kiefer, Amy K.

AU - Polcari, Michael

AU - Peccei, Christian

AU - Becker, K. David

AU - Cupples, L. Adrienne

AU - Chen, Clara A.

AU - Wang, Catharine

AU - Sharp, Richard R

AU - Gray, Stacy W.

AU - Koenig, Barbara A.

AU - Kaufman, David J.

AU - Kaphingst, Kimberly

AU - Gollust, Sarah

PY - 2014/12/3

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