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.

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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DOI:
10.1186/s13073-014-0096-0
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发表时间:
2014
期刊:
影响因子:
12.3
通讯作者:
PGen Study Group
PGen Study Group
中科院分区:
生物学1区
文献类型:
--
作者:
Carere DA;Couper MP;Crawford SD;Kalia SS;Duggan JR;Moreno TA;Mountain JL;Roberts JS;Green RC;PGen Study Group

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与23andMe和Pathway Genomics合作设计的个人基因组学(PGen)研究的影响是学术界与产业界合作的典范,并为研究与直接面向消费者的个人基因组检测(PGT)相关的心理社会,行为和健康结果提供了纵向数据集。基于网络的调查在三个时间点进行,并与个人层面的PGT结果相关联,提供了1,464名PGT客户的数据,其中71%完成了每次随访调查,64%完成了所有三次调查。该队列包括15.7%的非白人种族,包括一系列的收入,教育和健康水平。超过90%的参与者同意为未来的研究重新联系。本文的在线版本(doi:10.1186/s13073-014-0096-0)包含补充材料,可供授权用户使用。
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. 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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