Clinical Cancer and Direct-to-Consumer Genetic Test Result-Sharing Behavior: Findings from HINTS 2020.

Clinical Cancer and Direct-to-Consumer Genetic Test Result-Sharing Behavior: Findings from HINTS 2020.
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DOI:
10.3390/jpm13010018
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发表时间:
2022-12-22
影响因子:
--
通讯作者:
Shete, Sanjay
Shete, Sanjay
中科院分区:
医学4区
文献类型:
--
作者:
Makhnoon, Sukh;Yu, Robert;Peterson, Susan K.;Shete, Sanjay

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前言:在基因组医学中,与不同的利益相关者,如家庭成员、医疗保健提供者和遗传顾问(HCP/GC)、配偶/伴侣和朋友共享基因测试结果是一种具有临床重要性的健康行为。方法:利用健康信息全国趋势调查(提示5,周期4)收集的具有全国代表性的人群数据,我们确定了高危癌症检测、遗传健康风险检测和血统检测的高危癌症检测结果分享行为的患病率和相关因素,分为四组:HCP/GCs、一级亲属(FDR)、配偶/伴侣和朋友/其他。结果:总体而言,在接受高危癌症基因检测的患者中,68.4%的人与FDR分享他们的结果,而89.9%的人与HCP/GCs分享他们的结果。在调整后的多变量分析中,女性分享的可能性是男性的9倍(p=0.006),而那些有癌症个人病史的人分享HCP/GC的可能性较低(OR=0.025,p≤0.001)。在那些接受基因健康风险测试的人中,66.5%与HCP/GCs共用,38.7%与FDR共用,66.6%与配偶/伴侣共用,12.8%与朋友共用,14.1%不与任何人分享结果。在那些接受血统测试的人中,很少有人与HCP/GC分享结果(2.6%),而报告与FDR、配偶/伴侣和朋友分享结果的比例不大。讨论:这些数据增加了关于遗传信息共享的人群流行率的经验证据,并作为公众参与基因检测的指标。
Introduction: Sharing genetic test results with different stakeholders such as family members, healthcare providers and genetic counselors (HCP/GCs), spouses/partners, and friends is a health behavior of clinical importance in genomic medicine. Methods: Using nationally representative population-based data collected from the Health Information National Trends Survey (HINTS 5, cycle 4), we identified the prevalence and factors associated with genetic test result-sharing behavior for high-risk cancer tests, genetic health risk tests, and ancestry tests within four groups: HCP/GCs, first-degree relatives (FDRs), spouse/partner, and friend/other. Results: Overall, 68.4% of those who underwent high-risk cancer genetic testing shared their results with FDRs, whereas 89.9% shared with HCP/GCs. In adjusted multivariable analyses, women were nine times more likely than men to share (p = 0.006), and those with a personal history of cancer were less likely to share with HCP/GCs (OR = 0.025, p ≤ 0.001). Of those tested for genetic health risk, 66.5% shared with HCP/GCs, 38.7% with FDRs, 66.6% with a spouse/partner, 12.8% with a friend, and 14.1% did not share results with anyone. Of those who underwent ancestry testing, very few shared results with HCP/GCs (2.6%), whereas modest sharing was reported with FDRs, spouses/partners, and friends. Discussion: These data add empirical evidence about the population prevalence of genetic information sharing and serve as a metric for public engagement with genetic testing.
DOI: 10.1016/j.pmedr.2022.101781
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