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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

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...

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Autores principales: Carere, Deanna Alexis, Couper, Mick P, Crawford, Scott D, Kalia, Sarah S, Duggan, Jake R, Moreno, Tanya A, Mountain, Joanna L, Roberts, J Scott, Green, Robert C
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2014
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4256737/
https://www.ncbi.nlm.nih.gov/pubmed/25484922
http://dx.doi.org/10.1186/s13073-014-0096-0
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author Carere, Deanna Alexis
Couper, Mick P
Crawford, Scott D
Kalia, Sarah S
Duggan, Jake R
Moreno, Tanya A
Mountain, Joanna L
Roberts, J Scott
Green, Robert C
author_facet Carere, Deanna Alexis
Couper, Mick P
Crawford, Scott D
Kalia, Sarah S
Duggan, Jake R
Moreno, Tanya A
Mountain, Joanna L
Roberts, J Scott
Green, Robert C
author_sort Carere, Deanna Alexis
collection PubMed
description 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. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1186/s13073-014-0096-0) contains supplementary material, which is available to authorized users.
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spelling pubmed-42567372014-12-05 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 Carere, Deanna Alexis Couper, Mick P Crawford, Scott D Kalia, Sarah S Duggan, Jake R Moreno, Tanya A Mountain, Joanna L Roberts, J Scott Green, Robert C Genome Med Method 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. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1186/s13073-014-0096-0) contains supplementary material, which is available to authorized users. BioMed Central 2014-12-03 /pmc/articles/PMC4256737/ /pubmed/25484922 http://dx.doi.org/10.1186/s13073-014-0096-0 Text en © Carere et al.; licensee BioMed Central Ltd. 2014 This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly credited. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
spellingShingle Method
Carere, Deanna Alexis
Couper, Mick P
Crawford, Scott D
Kalia, Sarah S
Duggan, Jake R
Moreno, Tanya A
Mountain, Joanna L
Roberts, J Scott
Green, Robert C
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
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
title_full 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
title_fullStr 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
title_full_unstemmed 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
title_short 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
title_sort 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
topic Method
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4256737/
https://www.ncbi.nlm.nih.gov/pubmed/25484922
http://dx.doi.org/10.1186/s13073-014-0096-0
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