Impact of Personal Genomics（PGen）研究的设计、方法和参与者特征，这是一项针对直接面向消费者的个人基因组检测客户的前瞻性队列研究。
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.
机构信息
Department of Epidemiology, Program in Genetic Epidemiology and Statistical Genetics, Harvard School of Public Health, Boston, MA 02115 USA ; Department of Medicine, Division of Genetics, Brigham and Women's Hospital, EC Alumnae Building, Suite 301, 41 Avenue Louis Pasteur, Boston, MA 02115 USA.
Survey Research Center, University of Michigan Institute for Social Research, Ann Arbor, MI 48106 USA.
出版信息
Genome Med. 2014 Dec 3;6(12):96. doi: 10.1186/s13073-014-0096-0. eCollection 2014.
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.
该研究由 23andMe 和 Pathway Genomics 合作设计，是学术与产业合作的典范，为研究与直接面向消费者的个人基因组检测（PGT）相关的社会心理、行为和健康结果提供了一个纵向数据集。该研究通过三次基于网络的调查，并与个人 PGT 结果相链接，共收集了 1464 名 PGT 客户的数据，其中 71%的客户完成了每次随访调查，64%的客户完成了所有三次调查。该队列包括 15.7%的非白种人群体，涵盖了不同的收入、教育和健康水平。超过 90%的参与者同意在未来的研究中重新联系。
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