Huntsman Cancer Institute, Salt Lake City, UT, USA.
Department of Communication, University of Utah, Salt Lake City, UT, USA.
Genet Med. 2019 Aug;21(8):1691-1698. doi: 10.1038/s41436-018-0402-0. Epub 2018 Dec 21.
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.
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。