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. 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

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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

Deanna Alexis Carere et al. Genome Med. .
Free PMC article

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.

Figures

Figure 1
Figure 1
Timing of personal genomic testing (PGT) and survey data collection in the PGen Study. Steps of the PGT process are indicated by solid arrows and bold text; data collection points are indicated by dashed arrows and italicized text. BL, baseline; 2 W, 2 week; 6 M, 6 month.
Figure 2
Figure 2
Data transfer and protection in the PGen Study. Heavily shaded boxes represent PGen Study team members; PGT customers/PGen Study participants are represented by a striped box. The contents of each box represent the data types available to each party. Numbers indicate the sequential steps involved in data transfer between PGen Study members (step 1 is italicized), and each arrow represents a one-way flow of data between parties. Data in parentheses were embedded in the survey invitations and were not visible to participants. PGT, personal genomic testing; MID, master identification number; SID, survey identification number; PID, personal identification number; BL, baseline; 2 W, 2 week; 6 M, 6 month.
Figure 3
Figure 3
PGen Study data collection strategy and enrollment results. Heavily shaded boxes represent data collection points; lightly shaded boxes represent loss-to-follow-up or exclusion criteria.

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