Characterizing Participants in the ClinSeq Genome Sequencing Cohort as Early Adopters of a New Health Technology.

Characterizing Participants in the ClinSeq Genome Sequencing Cohort as Early Adopters of a New Health Technology.
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DOI:
10.1371/journal.pone.0132690
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发表时间:
2015
期刊:
影响因子:
3.7
通讯作者:
Biesecker BB
Biesecker BB
中科院分区:
综合性期刊3区
文献类型:
--
作者:
Lewis KL;Han PK;Hooker GW;Klein WM;Biesecker LG;Biesecker BB

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基因组测序是一种新的临床工具,有可能确定疾病的遗传起源。然而,这项新技术的复杂性是显着的,很少有人知道它的整合到临床护理,其潜在的采用患者。人们对个性化医疗的期望很高,重要的是要将期望与测试的现实相匹配。NIH ClinSeq队列研究试点将基因组测序整合到临床研究和护理中,以评估实施这项技术的技术,医疗和社会行为方面。超过950名年龄在45-65岁的成年人已被招募并进行临床表型分析。作为一项初步研究,我们描述了ClinSeq参与者的个性特征,并探讨了这些特征与其他新技术早期采用者的特征如何比较。我们的分析是对队列中630名成员的回答进行的,这些成员在收到任何基因组测序结果之前完成了关于健康认知,情感,健康相关行为和人格特质的基线调查。大多数参与者是白色(90.5%),至少有大学学位(86.5%),至少有一个亲生子女(74.6%)。这个ClinSeq样本的成员被发现在性格乐观和韧性方面很高。他们的高社会经济地位超过了其他早期采用新技术的人。与一般人群相比,这些属性可能有助于参与者对有利结果的预期和承担更高风险的意愿。这些特征可以区分那些最有可能追求基因组测序的人,并表明他们管理返回结果的心理资源。
Genome sequencing is a novel clinical tool that has the potential to identify genetic origins of disease. However, the complexities of this new technology are significant and little is known about its integration into clinical care, and its potential adoption by patients. Expectations of its promise for personalized medicine are high and it is important to properly match expectations to the realities of the test. The NIH ClinSeq cohort study pilots the integration of genome sequencing into clinical research and care to assess the technical, medical and socio-behavioral aspects of implementing this technology. Over 950 adults ages 45-65 have been enrolled and clinically phenotyped. As an initial study, we describe the personality traits of ClinSeq participants, and explore how these traits compare to those that characterize early adopters of other new technologies. Our analysis was conducted on responses from 630 members of the cohort who completed a baseline survey on health cognitions, affect, health-related behaviors and personality traits, prior to receipt of any genome sequencing results. The majority of participants were white (90.5%), had at least a college degree (86.5%), and had at least one biological child (74.6%). Members of this ClinSeq sample were found to be high in dispositional optimism and resilience. Their high SES paralleled that of other early adopters of new technology. These attributes may contribute to participants’ expectations for favorable outcomes and willingness to take higher risks when compared to the general population. These characteristics may distinguish those who are most likely to pursue genome sequencing and be indicative of their psychological resources to manage returned results.