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.
authors.affiliation: Department of Epidemiology, Program in Genetic Epidemiology and Statistical Genetics, Harvard School of Public Health, Boston, MA 02115 USA ; Department of Medicine, Division of Genetics, Brigham and Women's Hospital, EC Alumnae Building, Suite 301, 41 Avenue Louis Pasteur, Boston, MA 02115 USA.
authors.forename: Deanna Alexis
authors.initials: DA
authors.lastname: Carere
authors.affiliation: Survey Research Center, University of Michigan Institute for Social Research, Ann Arbor, MI 48106 USA.
authors.forename: Mick P
authors.initials: MP
authors.lastname: Couper
authors.affiliation: Survey Sciences Group, LLC, Ann Arbor, MI 48108 USA.
authors.forename: Scott D
authors.initials: SD
authors.lastname: Crawford
authors.affiliation: Department of Medicine, Division of Genetics, Brigham and Women's Hospital, EC Alumnae Building, Suite 301, 41 Avenue Louis Pasteur, Boston, MA 02115 USA.
authors.forename: Sarah S
authors.initials: SS
authors.lastname: Kalia
authors.affiliation: Department of Medicine, Division of Genetics, Brigham and Women's Hospital, EC Alumnae Building, Suite 301, 41 Avenue Louis Pasteur, Boston, MA 02115 USA.
authors.forename: Jake R
authors.initials: JR
authors.lastname: Duggan
authors.affiliation: Pathway Genomics, San Diego, CA 92121 USA.
authors.forename: Tanya A
authors.initials: TA
authors.lastname: Moreno
authors.affiliation: 23andMe Inc, Mountain View, CA 94043 USA.
authors.forename: Joanna L
authors.initials: JL
authors.lastname: Mountain
authors.affiliation: Department of Health Behavior and Health Education, University of Michigan School of Public Health, Ann Arbor, MI 48104 USA.
authors.forename: J Scott
authors.initials: JS
authors.lastname: Roberts
authors.affiliation: Department of Medicine, Division of Genetics, Brigham and Women's Hospital, EC Alumnae Building, Suite 301, 41 Avenue Louis Pasteur, Boston, MA 02115 USA ; Harvard Medical School, EC Alumnae Building, Suite 301, 41 Avenue Louis Pasteur, Boston, MA 02115 USA ; Partners Personalized Medicine, EC Alumnae Building, Suite 301, 41 Avenue Louis Pasteur, Boston, MA 02115 USA.
authors.forename: Robert C
authors.initials: RC
authors.lastname: Green