Perceptions of genetic counseling services in direct-to-consumer personal genomic testing
Perceptions of genetic counseling services in direct-to-consumer personal genomic testing
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DOI：
10.1111/cge.12166
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发表时间：
2013-10-01
影响因子：
3.5
通讯作者：
Bloss, C. S.
中科院分区：
文献类型：
--
作者：
Darst, B. F.;Madlensky, L.;Bloss, C. S.
本研究的目的是在直接面向消费者的个人基因组测试的背景下描述消费者对遗传咨询服务的看法。利用斯克里普斯基因组健康计划的数据，我们评估了直接面向消费者的基因组测试消费者对遗传咨询服务的利用和看法。在长期随访中，即测试后约 14 个月，参与者被要求回答几个项目，以衡量他们与 Navigenics 遗传咨询师的相互作用（如果有），以及他们对这些相互作用的看法。在完成长期随访的 1325 人中，187 人 (14.1%) 表示他们曾与遗传咨询师交谈过。不使用咨询服务的最常见原因是由于认为已经了解自己的结果而缺乏需要（55.6％）。使用该服务的最常见原因包括想要利用免费服务（43.9%）和想要了解有关风险计算的更多信息（42.2%）。在使用该服务的人中，很大一部分人表示咨询提高了他们对结果（54.5%）和总体遗传学（43.9%）的理解。相对较小比例的参与者在直接面向消费者的个人基因组测试后利用了遗传咨询。然而，在那些使用该服务的人中，很大一部分人认为它提供了丰富的信息，因此可能是有益的。
To describe consumers' perceptions of genetic counseling services in the context of direct-to-consumer personal genomic testing is the purpose of this research. Utilizing data from the Scripps Genomic Health Initiative, we assessed direct-to-consumer genomic test consumers' utilization and perceptions of genetic counseling services. At long-term follow-up, approximately 14months post-testing, participants were asked to respond to several items gauging their interactions, if any, with a Navigenics genetic counselor, and their perceptions of those interactions. Out of 1325 individuals who completed long-term follow-up, 187 (14.1%) indicated that they had spoken with a genetic counselor. The most commonly given reason for not utilizing the counseling service was a lack of need due to the perception of already understanding one's results (55.6%). The most common reasons for utilizing the service included wanting to take advantage of a free service (43.9%) and wanting more information on risk calculations (42.2%). Among those who utilized the service, a large fraction reported that counseling improved their understanding of their results (54.5%) and genetics in general (43.9%). A relatively small proportion of participants utilized genetic counseling after direct-to-consumer personal genomic testing. Among those individuals who did utilize the service, however, a large fraction perceived it to be informative, and thus presumably beneficial.