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

被引：39

作者：

Carere, Deanna Alexis ^{[1
,2
]}

Couper, Mick P. ^{[3
]}

Crawford, Scott D. ^{[4
]}

Kalia, Sarah S. ^{[2
]}

Duggan, Jake R. ^{[2
]}

Moreno, Tanya A. ^{[5
]}

Mountain, Joanna L. ^{[6
]}

Roberts, J. Scott ^{[7
]}

Green, Robert C. ^{[2
,8
,9
]}

机构：

[1] Harvard Univ, Sch Publ Hlth, Dept Epidemiol, Program Genet Epidemiol & Stat Genet, Boston, MA 02115 USA

[2] Brigham & Womens Hosp, Dept Med, Div Genet, Boston, MA 02115 USA

[3] Univ Michigan, Inst Social Res, Survey Res Ctr, Ann Arbor, MI 48106 USA

[4] Survey Sci Grp LLC, Ann Arbor, MI 48108 USA

[5] Pathway Genom, San Diego, CA 92121 USA

[6] 23andMe Inc, Mountain View, CA 94043 USA

[7] Univ Michigan, Sch Publ Hlth, Dept Hlth Behav & Hlth Educ, Ann Arbor, MI 48104 USA

[8] Harvard Univ, Sch Med, Boston, MA 02115 USA

[9] Partners Personalized Med, Boston, MA 02115 USA

来源：

GENOME MEDICINE | 2014年 / 6卷

基金：

加拿大健康研究院; 美国国家卫生研究院;

关键词：

GENETIC SUSCEPTIBILITY TEST; RISK PERCEPTION; HEALTH; AWARENESS; SERVICES; RESPONSES; ANXIETY; CARE;

D O I：

10.1186/s13073-014-0096-0

中图分类号：

Q3 [遗传学];

学科分类号：

071007 ; 090102 ;

摘要：

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.

引用

页数：11

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