Abstract：
People report experiencing value from learning genomic results even in the absence of clinically actionable information. Such personal utility has emerged as a key concept in genomic medicine. The lack of a validated patient-reported outcome measure of personal utility has impeded the ability to assess this concept among those receiving genomic results and evaluate the patient-perceived value of genomics. We aimed to construct and psychometrically evaluate a scale to measure personal utility of genomic results-the Personal Utility (PrU) scale.
We used an evidence-based, operational definition of personal utility, with data from a systematic literature review and Delphi survey to build a novel scale. After piloting with 24 adults, the PrU was administered to healthy adults in a Clinical Sequencing Evidence-Generating Research Consortium study after receiving results. We investigated the responses using exploratory factor analysis.
The exploratory factor analysis (N = 841 participants) resulted in a 3-factor solution, accounting for 74% of the variance in items: (1) self-knowledge (α = 0.92), (2) reproductive planning (α = 0.89), and (3) practical benefits (α = 0.91).
Our findings support the use of the 3-factor PrU to assess personal utility of genomic results. Validation of the PrU in other samples will be important for more wide-spread application.
We used an evidence-based, operational definition of personal utility, with data from a systematic literature review and Delphi survey to build a novel scale. After piloting with 24 adults, the PrU was administered to healthy adults in a Clinical Sequencing Evidence-Generating Research Consortium study after receiving results. We investigated the responses using exploratory factor analysis.
The exploratory factor analysis (N = 841 participants) resulted in a 3-factor solution, accounting for 74% of the variance in items: (1) self-knowledge (α = 0.92), (2) reproductive planning (α = 0.89), and (3) practical benefits (α = 0.91).
Our findings support the use of the 3-factor PrU to assess personal utility of genomic results. Validation of the PrU in other samples will be important for more wide-spread application.
摘要：
目的：人们报告说，即使在缺乏临床可操作信息的情况下，学习基因组结果也有价值。这种个人效用已成为基因组医学中的关键概念。缺乏经过验证的患者报告的个人效用结果衡量标准，阻碍了在接受基因组结果的人群中评估这一概念并评估基因组学的患者感知价值的能力。我们旨在构建和心理评估一个量表来衡量基因组结果的个人效用-PrU。
方法：我们使用了基于证据的方法，个人效用的操作定义，用系统的文献综述和德尔菲调查的数据构建了一个新的量表。在与24名成年人一起驾驶后，在一项临床测序证据产生研究联盟(CSER)研究中,在获得结果后,对健康成人进行了PrU给药.我们使用探索性因子分析调查了反应。
结果：探索性因素分析（n=841名参与者）得出了三因素解决方案，占项目差异的74%：1)自我知识(α=0.92)，2）生殖计划（α=.89），3)实际效益(α=.91)。
结论：我们的发现支持使用三因子PrU来评估基因组结果的个人效用。在其他样品中验证PrU对于更广泛的应用将是重要的。
方法：我们使用了基于证据的方法，个人效用的操作定义，用系统的文献综述和德尔菲调查的数据构建了一个新的量表。在与24名成年人一起驾驶后，在一项临床测序证据产生研究联盟(CSER)研究中,在获得结果后,对健康成人进行了PrU给药.我们使用探索性因子分析调查了反应。
结果：探索性因素分析（n=841名参与者）得出了三因素解决方案，占项目差异的74%：1)自我知识(α=0.92)，2）生殖计划（α=.89），3)实际效益(α=.91)。
结论：我们的发现支持使用三因子PrU来评估基因组结果的个人效用。在其他样品中验证PrU对于更广泛的应用将是重要的。
