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Genome Med. 2014 Dec 3;6(12):96. doi: 10.1186/s13073-014-0096-0. eCollection 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.

Author information

  • 1Department 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.
  • 2Survey Research Center, University of Michigan Institute for Social Research, Ann Arbor, MI 48106 USA.
  • 3Survey Sciences Group, LLC, Ann Arbor, MI 48108 USA.
  • 4Department of Medicine, Division of Genetics, Brigham and Women's Hospital, EC Alumnae Building, Suite 301, 41 Avenue Louis Pasteur, Boston, MA 02115 USA.
  • 5Pathway Genomics, San Diego, CA 92121 USA.
  • 623andMe Inc, Mountain View, CA 94043 USA.
  • 7Department of Health Behavior and Health Education, University of Michigan School of Public Health, Ann Arbor, MI 48104 USA.
  • 8Department 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.

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.

PMID:
25484922
PMCID:
PMC4256737
DOI:
10.1186/s13073-014-0096-0
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