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
|
---|---|
Published in |
Genome Medicine, December 2014
|
DOI | 10.1186/s13073-014-0096-0 |
Pubmed ID | |
Authors |
Deanna Alexis Carere, Mick P Couper, Scott D Crawford, Sarah S Kalia, Jake R Duggan, Tanya A Moreno, Joanna L Mountain, J Scott Roberts, Robert C Green, for the PGen Study Group |
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. |
X Demographics
Geographical breakdown
Country | Count | As % |
---|---|---|
United States | 6 | 27% |
United Kingdom | 4 | 18% |
Austria | 2 | 9% |
Netherlands | 2 | 9% |
Canada | 2 | 9% |
Australia | 1 | 5% |
Germany | 1 | 5% |
Turkey | 1 | 5% |
Unknown | 3 | 14% |
Demographic breakdown
Type | Count | As % |
---|---|---|
Scientists | 13 | 59% |
Members of the public | 9 | 41% |
Mendeley readers
Geographical breakdown
Country | Count | As % |
---|---|---|
United States | 1 | 1% |
Unknown | 75 | 99% |
Demographic breakdown
Readers by professional status | Count | As % |
---|---|---|
Researcher | 14 | 18% |
Other | 13 | 17% |
Student > Master | 11 | 14% |
Student > Bachelor | 9 | 12% |
Student > Ph. D. Student | 9 | 12% |
Other | 16 | 21% |
Unknown | 4 | 5% |
Readers by discipline | Count | As % |
---|---|---|
Agricultural and Biological Sciences | 19 | 25% |
Biochemistry, Genetics and Molecular Biology | 17 | 22% |
Medicine and Dentistry | 16 | 21% |
Social Sciences | 6 | 8% |
Computer Science | 4 | 5% |
Other | 9 | 12% |
Unknown | 5 | 7% |