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Direct‐to‐consumer genetic testing companies tell their customers to ‘see a genetic counselor'. How do genetic counselors feel about direct‐to‐consumer genetic testing?
Journal of Genetic Counseling ( IF 1.9 ) Pub Date : 2020-07-24 , DOI: 10.1002/jgc4.1310
Vicky Hsieh 1 , Tamara Braid 2 , Erynn Gordon 3 , Laura Hercher 4
Affiliation  

Professional societies, the FDA, and many direct‐to‐consumer genetic testing (DTC‐GT) companies have highlighted the value of counseling from a medical professional with genetics expertise in order to enhance the value and minimize the risks associated with DTC‐GT. However, there is limited information available identifying genetic counselors' own views on DTC‐GT, their willingness to counsel consumers based on DTC‐GT results, and their experiences to date seeing DTC‐GT consumers in a clinical setting. We surveyed genetic counselors accessed through mailing lists associated with the National Society of Genetic Counselors (NSGC) and the American Board of Genetic Counseling (ABGC). Response rate was estimated to be 12.2% (n = 482). A majority of all respondents (56.4%, n = 263) described themselves as feeling negatively or very negatively toward DTC‐GT; only 6.9% (n = 32) described themselves as feeling positively or very positively. While 90.9% of respondents (n = 398) believed that DTC‐GT would be improved with the involvement of genetic counselors, only 31.2% agreed or strongly agreed that they are comfortable providing counseling to DTC‐GT consumers (n = 142). Clinical counseling of DTC‐GT consumers is not routine but it is also not uncommon; 40.1% of all respondents (n = 189) have seen at least one consumer in clinic for the sole purpose of reviewing DTC‐GT results. The results of our study suggest that most respondents would be more accepting of DTC‐GT if genetic counseling was a part of the process, but the majority of counselors do not feel comfortable providing this service.

中文翻译:

直接面向消费者的基因检测公司告诉他们的客户“去看遗传咨询师”。遗传咨询师如何看待直接面向消费者的基因检测?

专业协会、FDA 和许多直接面向消费者的基因检测 (DTC-GT) 公司都强调了具有遗传学专业知识的医学专业人士提供咨询的价值,以提高价值并最大限度地降低与 DTC-GT 相关的风险。然而,关于遗传咨询师自己对 DTC-GT 的看法、他们根据 DTC-GT 结果为消费者提供咨询的意愿以及他们迄今为止在临床环境中看到 DTC-GT 消费者的经验,可用信息有限。我们调查了通过与国家遗传咨询师协会 (NSGC) 和美国遗传咨询委员会 (ABGC) 相关的邮件列表访问的遗传咨询师。响应率估计为 12.2% ( n  = 482)。大多数受访者 (56.4%, n = 263)描述自己对 DTC-GT 感到消极或非常消极;只有 6.9% ( n  = 32) 形容自己感觉积极或非常积极。虽然 90.9% 的受访者 ( n  = 398) 相信遗传咨询师的参与会改善 DTC-GT,但只有 31.2% 同意或强烈同意他们愿意为 DTC-GT 消费者提供咨询 ( n  = 142)。DTC-GT 消费者的临床咨询并不常规,但也并不少见;所有受访者的 40.1% ( n = 189) 至少有一名消费者在诊所就诊,其唯一目的是审查 DTC-GT 结果。我们的研究结果表明,如果遗传咨询是过程的一部分,大多数受访者会更接受 DTC-GT,但大多数咨询师对提供这项服务感到不自在。
更新日期:2020-07-24
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