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.

Autor: Carere DA; 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., Couper MP; Survey Research Center, University of Michigan Institute for Social Research, Ann Arbor, MI 48106 USA., Crawford SD; Survey Sciences Group, LLC, Ann Arbor, MI 48108 USA., Kalia SS; Department of Medicine, Division of Genetics, Brigham and Women's Hospital, EC Alumnae Building, Suite 301, 41 Avenue Louis Pasteur, Boston, MA 02115 USA., Duggan JR; Department of Medicine, Division of Genetics, Brigham and Women's Hospital, EC Alumnae Building, Suite 301, 41 Avenue Louis Pasteur, Boston, MA 02115 USA., Moreno TA; Pathway Genomics, San Diego, CA 92121 USA., Mountain JL; 23andMe Inc, Mountain View, CA 94043 USA., Roberts JS; Department of Health Behavior and Health Education, University of Michigan School of Public Health, Ann Arbor, MI 48104 USA., Green RC; 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.
Jazyk: angličtina
Zdroj: Genome medicine [Genome Med] 2014 Dec 03; Vol. 6 (12), pp. 96. Date of Electronic Publication: 2014 Dec 03 (Print Publication: 2014).
DOI: 10.1186/s13073-014-0096-0
Abstrakt: 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.
Databáze: MEDLINE
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