Genetic counselors' and community clinicians' implementation and perceived barriers to informed consent during pre-test counseling for hereditary cancer risk.
Genetic counselors' and community clinicians' implementation and perceived barriers to informed consent during pre-test counseling for hereditary cancer risk.
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遗传咨询师和社区临床医生在遗传性癌症风险的测试前咨询过程中实施知情同意的情况以及感知到的障碍。
DOI：
10.1002/jgc4.1887
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发表时间：
2024
影响因子：
1.9
通讯作者：
Blazer,KathleenR
中科院分区：
文献类型：
--
作者：
Capasso,Alexandra;Nehoray,Bita;Gorman,Nicholas;Quinn,EmilyA;Bucio,Daiana;Blazer,KathleenR
随着对遗传癌症风险评估(GCRA)的需求持续增加，加大对患者进行分诊、促进知情同意并下令对癌症风险进行基因测试的紧迫感也在不断增加。全国遗传咨询师协会概述了在GCRA会议上应讨论的知情同意的要素。虽然这一实践资源旨在改善健康公平，但缺乏关于知情同意要素在实践中的落实情况的研究。这项回顾和前瞻性的混合方法研究评估了307名社区临床医生(CC)和129名癌症遗传顾问(GC)在GCRA测试前如何充分处理知情同意的要素，以及他们在解决这些要素时面临的障碍。结果显示，在测试前的咨询中，两个队列中超过90%的人一致地解决了知情同意的10个要素中的至少5个要素。技术方面、测试的准确性和测试结果的利用是最相似的内容。值得注意的是，GC更经常审查测试的目的、测试对象、有关基因的一般信息(S)和经济考虑因素，而CC更经常审查测试的替代方案。这两组人都报告说，知情同意程序的心理社会方面是最不充分涉及的因素。时间限制和与患者有关的问题最常被两个队列引用为最佳促进知情同意的障碍。CCS报告的其他障碍包括提供者缺乏认识、经验或教育，以及资源和机构支持的可用性。这项研究的结果可能有助于开发替代的交付模式，其中包括补充教育工具，以增强患者对基因检测的效用的理解，同时有助于缓解时间限制的障碍。同样重要的是，利用这些信息为提供者开发继续教育工具。
As demand for genetic cancer risk assessment (GCRA) continues to increase, so does the sense of urgency to scale up efforts to triage patients, facilitate informed consent, and order genetic testing for cancer risk. The National Society of Genetic Counselors outlines the elements of informed consent that should be addressed in a GCRA session. While this practice resource aims to improve health equity, research on how well the elements of informed consent are implemented in practice is lacking. This retrospective and prospective mixed‐methods study assessed how adequately the elements of informed consent are addressed during pre‐test GCRA among 307 community clinicians (CC) and 129 cancer genetic counselors (GC), and barriers they face to addressing these elements. Results revealed that more than 90% of both cohorts consistently addressed components of at least 5 of the 10 elements of informed consent during a pre‐test consultation. Technical aspects and accuracy of the test and utilization of test results were the most similarly addressed elements. Notably, GCs more often review the purpose of the test and who to test, general information about the gene(s), and economic considerations whereas CCs more often review alternatives to testing. Both cohorts reported psychosocial aspects of the informed consent process as the least adequately addressed element. Time constraints and patient‐related concerns were most often cited by both cohorts as barriers to optimal facilitation of informed consent. Additional barriers reported by CCs included provider lack of awareness, experience, or education, and availability of resources and institutional support. Findings from this study may contribute to the development of alternative delivery models that incorporate supplementary educational tools to enhance patient understanding about the utility of genetic testing, while helping to mitigate the barrier of time constraints. Equally important is the use of this information to develop continuing education tools for providers.