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Direct-to-consumer genetic testing: an assessment of genetic counselors' knowledge and beliefs.

机译:直接面向消费者的基因测试:对遗传咨询师知识和信念的评估。

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PURPOSE: Direct-to-consumer genetic testing is a new means of obtaining genetic testing outside of a traditional clinical setting. This study assesses genetic counselors' experience, knowledge, and beliefs regarding direct-to-consumer genetic testing for tests that would currently be offered in genetics clinics. METHODS: Members of the National Society of Genetic Counselors completed a web-administered survey in February 2008. RESULTS: Response rate was 36%; the final data analysis included 312 respondents. Eighty-three percent of respondents had two or fewer inquiries about direct-to-consumer genetic testing, and 14% had received requests for test interpretation or discussion. Respondents believed that genetic counselors have a professional obligation to be knowledgeable about direct-to-consumer genetic testing (55%) and interpret results (48%). Fifty-one percent of respondents thought genetic testing should be limited to a clinical setting; 56% agreed direct-to-consumer genetic testing is acceptable if genetic counseling is provided. More than 70% of respondents would definitely or possibly consider direct-to-consumer testing for patients who (1) have concerns about genetic discrimination, (2) want anonymous testing, or (3) have geographic constraints. CONCLUSIONS: Results indicate that genetic counselors have limited patient experiences with direct-to-consumer genetic testing and are cautiously considering if and under what circumstances this approach should be used.
机译:目的:直接面向消费者的基因检测是在传统临床环境之外获得基因检测的一种新方法。这项研究评估了遗传咨询师有关直接面向消费者的基因检测的经验,知识和信念,以进行目前遗传学诊所提供的检测。方法:美国国家遗传咨询顾问协会成员于2008年2月完成了一项网络管理的调查。最终数据分析包括312位受访者。 83%的受访者对直接面向消费者的基因测试有两次或更少的询问,而14%的人收到了关于测试解释或讨论的请求。受访者认为,遗传咨询师有专业知识,必须了解直接面向消费者的基因检测(55%)并解释结果(48%)。 51%的受访者认为基因检测应限于临床环境;如果提供遗传咨询,则可以接受56%的商定直接面向消费者的基因测试。超过70%的受访者肯定或可能考虑对(1)担心遗传歧视,(2)希望匿名检查或(3)有地理限制的患者进行直接面向消费者的测试。结论:结果表明遗传咨询员接受直接面向消费者的基因检测的经验有限,并正在谨慎考虑是否以及在何种情况下应使用这种方法。

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