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本文引用的文献

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Importance of race and ethnicity in individuals' use of and responses to genomic information.种族和族裔在个人对基因组信息的使用及反应中的重要性。
Per Med. 2016 Jan;13(1):1-4. doi: 10.2217/pme.15.39. Epub 2015 Dec 14.
2
Communication of cancer-related genetic and genomic information: A landscape analysis of reviews.癌症相关遗传和基因组信息的交流:综述的全景分析。
Transl Behav Med. 2018 Jan 29;8(1):59-70. doi: 10.1093/tbm/ibx063.
3
From public health genomics to precision public health: a 20-year journey.从公共卫生基因组学到精准公共卫生:20 年的历程。
Genet Med. 2018 Jun;20(6):574-582. doi: 10.1038/gim.2017.211. Epub 2017 Dec 14.
4
Psychological and behavioural impact of returning personal results from whole-genome sequencing: the HealthSeq project.全基因组测序返回个人结果的心理和行为影响:健康序列计划
Eur J Hum Genet. 2017 Feb;25(3):280-292. doi: 10.1038/ejhg.2016.178. Epub 2017 Jan 4.
5
A Pilot Randomized Controlled Trial of the Feasibility, Acceptability, and Impact of Giving Information on Personalized Genomic Risk of Melanoma to the Public.一项向公众提供黑色素瘤个性化基因组风险信息的可行性、可接受性及影响的试点随机对照试验。
Cancer Epidemiol Biomarkers Prev. 2017 Feb;26(2):212-221. doi: 10.1158/1055-9965.EPI-16-0395. Epub 2016 Oct 4.
6
Genetic/Familial High-Risk Assessment: Colorectal Version 1.2016, NCCN Clinical Practice Guidelines in Oncology.遗传/家族性高风险评估:结直肠癌 1.2016 版,NCCN 肿瘤学临床实践指南。
J Natl Compr Canc Netw. 2016 Aug;14(8):1010-30. doi: 10.6004/jnccn.2016.0108.
7
The impact of communicating genetic risks of disease on risk-reducing health behaviour: systematic review with meta-analysis.传达疾病遗传风险对降低风险的健康行为的影响:系统评价与荟萃分析
BMJ. 2016 Mar 15;352:i1102. doi: 10.1136/bmj.i1102.
8
Transforming Cancer Prevention through Precision Medicine and Immune-oncology.通过精准医学和免疫肿瘤学转变癌症预防
Cancer Prev Res (Phila). 2016 Jan;9(1):2-10. doi: 10.1158/1940-6207.CAPR-15-0406.
9
Universal Screening of Colorectal Cancers for Lynch Syndrome: Challenges and Opportunities.对林奇综合征进行结直肠癌的普遍筛查:挑战与机遇
Dig Dis Sci. 2016 Apr;61(4):969-76. doi: 10.1007/s10620-015-3964-6. Epub 2015 Nov 24.
10
Clinical Application of Multigene Panels: Challenges of Next-Generation Counseling and Cancer Risk Management.多基因检测板的临床应用:下一代咨询与癌症风险管理的挑战
Front Oncol. 2015 Sep 29;5:208. doi: 10.3389/fonc.2015.00208. eCollection 2015.

基因组学和精准医学时代的癌症传播研究:范围综述。

Cancer communication research in the era of genomics and precision medicine: a scoping review.

机构信息

Huntsman Cancer Institute, Salt Lake City, UT, USA.

Department of Communication, University of Utah, Salt Lake City, UT, USA.

出版信息

Genet Med. 2019 Aug;21(8):1691-1698. doi: 10.1038/s41436-018-0402-0. Epub 2018 Dec 21.

DOI:10.1038/s41436-018-0402-0
PMID:30573799
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC7725534/
Abstract

Effective use of genetic and genomic data in cancer prevention and treatment depends on adequate communication with patients and the public. Although relevant empirical work has emerged, the scope and outcomes of this communication research have not been characterized. We conducted a comprehensive scoping review of recent published research (2010-2017) on communication of cancer-related genetic and genomic testing (CGT) information. Searches in six databases revealed 9243 unique records; 513 papers were included. Most papers utilized an observational quantitative design; fewer utilized an experimental design. More attention has been paid to outcomes of CGT results disclosure than to decision making regarding CGT uptake or the process of results disclosure. Psychosocial outcomes were most common across studies. This literature has a strong focus on BRCA1/2, with few papers focused on Lynch syndrome or next-generation technologies. Women, Caucasians, older adults, and those of higher socioeconomic status were overrepresented. Research gaps identified include the need for studies on the process of CGT communication; examining behavioral, decision making, and communication outcomes; and inclusion of diverse populations. Addressing these gaps can help improve the use of genomics in cancer control and reduce disparities in access to and use of CGT.

摘要

有效的利用遗传和基因组数据来预防和治疗癌症取决于与患者和公众的充分沟通。尽管已经出现了相关的实证研究,但该沟通研究的范围和结果尚未得到明确描述。我们对最近(2010-2017 年)发表的有关癌症相关遗传和基因组检测(CGT)信息沟通的研究进行了全面的范围综述。在六个数据库中的搜索共揭示了 9243 个独特的记录;共纳入了 513 篇论文。大多数论文采用了观察性定量设计;采用实验设计的较少。更多的注意力集中在 CGT 结果披露的结果上,而不是 CGT 采用的决策或结果披露的过程上。在研究中,心理社会结果最为常见。该文献主要集中在 BRCA1/2 上,只有少数论文关注林奇综合征或下一代技术。女性、白种人、老年人和社会经济地位较高的人在研究中所占比例过高。确定的研究空白包括需要研究 CGT 沟通的过程;检验行为、决策和沟通结果;以及纳入不同人群。解决这些差距可以帮助提高基因组学在癌症控制中的应用,并减少获取和使用 CGT 的差异。