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

Direct-to-consumer genetic testing: an assessment of genetic counselors' knowledge and beliefs.
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DOI:
10.1097/gim.0b013e3182011636
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发表时间:
2011-04
期刊:
Genetics in medicine : official journal of the American College of Medical Genetics
影响因子:
--
通讯作者:
Uhlmann WR
Uhlmann WR
中科院分区:
其他
文献类型:
--
作者:
Hock KT;Christensen KD;Yashar BM;Roberts JS;Gollust SE;Uhlmann WR

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直接面向消费者的基因检测是一种在传统临床环境之外获得基因检测的新手段。这项研究评估了遗传咨询师的经验,知识和信念,关于直接对消费者的基因检测的测试,目前将提供遗传诊所。全国遗传咨询师协会的成员于2008年2月完成了一项网络调查。回应率为36%;最终数据分析包括312名受访者。83%的受访者对直接面向消费者的基因检测有两次或更少的询问,14%的受访者收到过测试解释或讨论的请求。受访者认为,遗传咨询师有专业义务了解直接面向消费者的基因检测(55%)和解释结果(48%)。51%的受访者认为基因检测应仅限于临床环境; 56%的受访者同意,如果提供遗传咨询,直接面向消费者的基因检测是可以接受的。超过70%的受访者肯定会或可能会考虑对以下患者进行直接面向消费者的检测:(1)担心基因歧视,(2)希望匿名检测,或(3)有地理限制。结果表明,遗传咨询师对直接面向消费者的基因检测的患者经验有限,并且正在谨慎考虑是否以及在什么情况下应该使用这种方法
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. Members of the National Society of Genetic Counselors completed a web-administered survey in February 2008. 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. 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