Abstract:
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.
摘要:
专业社团,FDA,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员提供咨询的价值,以提高价值并最大程度地降低与DTC-GT相关的风险。然而,遗传咨询师对DTC-GT的看法有限,他们愿意根据DTC-GT结果为消费者提供咨询,以及他们迄今为止在临床环境中看到DTC-GT消费者的经验。我们调查了通过与国家遗传顾问协会(NSGC)和美国遗传咨询委员会(ABGC)相关的邮件列表访问的遗传顾问。反应率估计为12.2%(n=482)。所有受访者中的大多数(56.4%,n=263)描述自己对DTC-GT有负面或非常负面的感觉;只有6.9%(n=32)描述自己有积极或非常积极的感觉。虽然90.9%的受访者(n=398)认为DTC-GT会随着遗传咨询师的参与而得到改善,只有31.2%的人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消费者的临床咨询不是常规的,但也并不少见;所有受访者中有40.1%(n=189)在临床上见过至少一名消费者,其唯一目的是查看DTC-GT结果。我们的研究结果表明,如果遗传咨询是DTC-GT过程的一部分,大多数受访者会更接受DTC-GT,但是大多数辅导员觉得提供这项服务不舒服。