Carere Deanna Alexis, Kraft Peter, Kaphingst Kimberly A, Roberts J Scott, Green Robert C
Program in Genetic Epidemiology and Statistical Genetics, Department of Epidemiology, Harvard School of Public Health, Boston, Massachusetts, USA.
Division of Genetics, Department of Medicine, Brigham and Women's Hospital, Boston, Massachusetts, USA.
Genet Med. 2016 Jan;18(1):65-72. doi: 10.1038/gim.2015.34. Epub 2015 Mar 26.
The aim of this study was to measure changes to genetics knowledge and self-efficacy following personal genomic testing (PGT).
New customers of 23andMe and Pathway Genomics completed a series of online surveys. We measured genetics knowledge (nine true/false items) and genetics self-efficacy (five Likert-scale items) before receipt of results and 6 months after results and used paired methods to evaluate change over time. Correlates of change (e.g., decision regret) were identified using linear regression.
998 PGT customers (59.9% female; 85.8% White; mean age 46.9 ± 15.5 years) were included in our analyses. Mean genetics knowledge score was 8.15 ± 0.95 (out of 9) at baseline and 8.25 ± 0.92 at 6 months (P = 0.0024). Mean self-efficacy score was 29.06 ± 5.59 (out of 35) at baseline and 27.7 ± 5.46 at 6 months (P < 0.0001); on each item, 30-45% of participants reported lower self-efficacy following PGT. Change in self-efficacy was positively associated with health-care provider consultation (P = 0.0042), impact of PGT on perceived control over one's health (P < 0.0001), and perceived value of PGT (P < 0.0001) and was negatively associated with decision regret (P < 0.0001).
Lowered genetics self-efficacy following PGT may reflect an appropriate reevaluation by consumers in response to receiving complex genetic information.Genet Med 18 1, 65-72.
本研究旨在测量个人基因组检测（PGT）后遗传学知识和自我效能感的变化。
23andMe和Pathway Genomics的新客户完成了一系列在线调查。我们在收到检测结果前和结果出来6个月后测量了遗传学知识（9个是非题）和遗传学自我效能感（5个李克特量表项目），并使用配对方法评估随时间的变化。使用线性回归确定变化的相关因素（如决策后悔）。
998名PGT客户（59.9%为女性；85.8%为白人；平均年龄46.9±15.5岁）纳入我们的分析。基线时遗传学知识平均得分8.15±0.95（满分9分），6个月时为8.25±0.92（P = 0.0024）。基线时自我效能感平均得分29.06±5.59（满分35分），6个月时为27.7±5.46（P < 0.0001）；在每个项目上，30 - 45%的参与者报告PGT后自我效能感降低。自我效能感的变化与医疗保健提供者咨询呈正相关（P = 0.0042）、PGT对感知健康控制的影响呈正相关（P < 0.0001）以及PGT的感知价值呈正相关（P < 0.0001），与决策后悔呈负相关（P < 0.0001）。
PGT后遗传学自我效能感降低可能反映了消费者在收到复杂遗传信息后进行的适当重新评估。《遗传医学》18卷1期，65 - 72页。
