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在家附近提供咨询服务:遗传咨询师与自己家庭成员的经历。

Counseling Close to Home: Genetic Counselors' Experiences with their own Family Members.

作者信息

Rust Laura, Adamsheck Hallee, Reiser Catherine A, Petty Elizabeth M

机构信息

Mayo Clinic, Rochester, MN, USA.

, 200 First Street SW, Rochester, MN, 55905, USA.

出版信息

J Genet Couns. 2018 Feb;27(1):225-240. doi: 10.1007/s10897-017-0138-z. Epub 2017 Aug 16.

Abstract

Genetic counselors are trained to provide personalized genetic information and support to clients and their families. When requests for counseling comes from the counselor's own family member, should that counselor still provide service? There is a paucity of literature regarding genetic counselors counseling their own family members and no specific recommendations regarding how to reply to requests for genetic information from relatives. The purpose of this mixed methods study was to report genetic counselors' and genetic counseling students' perspectives and experiences providing genetic counseling to relatives. In the present study, 423 genetic counselors and genetic counseling students completed a 70-item web-based survey that explored genetic counselors' experiences counseling family members outside of a clinic setting. The majority (73%; n = 301/410) of respondents have been asked to provide genetic counseling. Over half (57%; n = 257/423) provided counseling, personalized genetic information or risk assessment to family members. Only a small fraction of respondents (11%; n = 45/420) responded that they received any formal training in their graduate education, or in any other capacity that addressed the issue of how genetic counselors should respond to genetic counseling requests made family members. Those who have were less likely to provide genetic counseling to a family member (p < 0.05). Respondents who provided genetic counseling to relatives were significantly more likely to think their colleagues would do the same. Those who never provided genetic counseling to relatives were more likely to think their colleagues would refer to an unrelated genetic counselor (p < 0.0001). We highlight how our results have clinical and professional implications and provide suggestions to generate discussion among genetic counselors on how they might respond to requests for counseling from family members.

摘要

遗传咨询师经过培训,旨在为客户及其家人提供个性化的遗传信息和支持。当咨询请求来自咨询师自己的家庭成员时,该咨询师是否仍应提供服务?关于遗传咨询师为自己的家庭成员提供咨询的文献很少,对于如何回复亲属的遗传信息请求也没有具体建议。这项混合方法研究的目的是报告遗传咨询师和遗传咨询专业学生为亲属提供遗传咨询的观点和经验。在本研究中,423名遗传咨询师和遗传咨询专业学生完成了一项包含70个条目的网络调查,该调查探讨了遗传咨询师在临床环境之外为家庭成员提供咨询的经历。大多数(73%;n = 301/410)受访者曾被要求提供遗传咨询。超过一半(57%;n = 257/423)的人向家庭成员提供了咨询、个性化遗传信息或风险评估。只有一小部分受访者(11%;n = 45/420)表示他们在研究生教育或其他任何情况下接受过关于遗传咨询师应如何回应家庭成员提出的遗传咨询请求的正式培训。接受过此类培训的人向家庭成员提供遗传咨询的可能性较小(p < 0.05)。为亲属提供遗传咨询的受访者更有可能认为他们的同事也会这样做。那些从未为亲属提供过遗传咨询的人更有可能认为他们的同事会将其转介给非亲属遗传咨询师(p < 0.0001)。我们强调了我们的研究结果如何具有临床和专业意义,并提供了一些建议,以引发遗传咨询师之间关于他们如何回应家庭成员咨询请求的讨论。

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