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针对不同种族和族裔人群的遗传咨询流程与策略:一项系统综述。

Genetic counseling processes and strategies for racially and ethnically diverse populations: A systematic review.

作者信息

Shete Mrunmayee, Kocher Megan, Pratt Rebekah, Lee Heewon, Zierhut Heather

机构信息

Department of Genetics, Cell Biology & Development, University of Minnesota-Twin Cities, Minneapolis, Minnesota, USA.

University Libraries, University of Minnesota-Twin Cities, Minneapolis, Minnesota, USA.

出版信息

J Genet Couns. 2024 Aug;33(4):842-861. doi: 10.1002/jgc4.1773. Epub 2023 Sep 24.

DOI:10.1002/jgc4.1773
PMID:37743585
Abstract

Genetic counseling outcomes are influenced by the processes and strategies used by counselors, yet little is known about how these strategies directly impact patients and populations. In particular, tailoring genetic counseling consultations to best meet the needs of cultural, racial, and ethnically diverse populations has been explored. This review aims to identify genetic counseling strategies tailored for a diversity of racial and ethnic populations with the goal to find ways to improve genetic counseling outcomes. Medline, Cochrane CENTRAL, Embase, PsychInfo, and CINAHL databases were searched for original research articles published in English that employed genetic counseling processes and strategies to improve genetic counseling outcomes, specifically for participants from ethnically or racially diverse populations. A review of 5300 titles and abstracts resulted in the identification of 36 articles that met the inclusion criteria. Three themes emerged: (1) community involvement in culturally tailoring genetic counseling, (2) creation and use of culturally tailored resources, and (3) modifications to the genetic counseling process. The effectiveness of genetic counseling strategies could not be evaluated due to lack of consistent outcome measures in the articles. The involvement of diverse ethnic and racial populations in developing inclusive genetic counseling tools and practices will help the profession provide better patient care in the future. More research connecting genetic counseling processes and outcomes will help to assess how well these modified approaches meet the needs of diverse populations.

摘要

遗传咨询的结果受到咨询师所采用的流程和策略的影响,但对于这些策略如何直接影响患者和人群,我们却知之甚少。特别是,人们已经开始探索如何量身定制遗传咨询服务,以最好地满足文化、种族和民族多样化人群的需求。本综述旨在确定为不同种族和民族人群量身定制的遗传咨询策略,目标是找到改善遗传咨询结果的方法。我们在Medline、Cochrane CENTRAL、Embase、PsychInfo和CINAHL数据库中检索了以英文发表的原创研究文章,这些文章采用了遗传咨询流程和策略来改善遗传咨询结果,特别是针对来自不同种族或民族人群的参与者。对5300个标题和摘要进行综述后,确定了36篇符合纳入标准的文章。出现了三个主题:(1)社区参与遗传咨询的文化定制,(2)创建和使用文化定制资源,以及(3)对遗传咨询流程的修改。由于文章中缺乏一致的结果测量方法,无法评估遗传咨询策略的有效性。让不同种族和民族人群参与开发包容性的遗传咨询工具和实践,将有助于该行业在未来提供更好的患者护理。更多将遗传咨询流程与结果联系起来的研究,将有助于评估这些改进方法在多大程度上满足了不同人群的需求。

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引用本文的文献

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Addressing family communication in genetic counseling: A scoping review of process studies.遗传咨询中的家庭沟通问题:过程研究的范围综述
J Genet Couns. 2025 Aug;34(4):e70067. doi: 10.1002/jgc4.70067.
2
Unveiling genetic counseling skills: Developing an online training course and analyzing counselor communication practices.揭示遗传咨询技巧:开发在线培训课程并分析咨询师的沟通实践。
J Genet Couns. 2025 Apr;34(2):e2002. doi: 10.1002/jgc4.2002.
3
Engaging communities: A scoping literature review of community-based participatory research in genetics service delivery settings.
社区参与:对基因服务提供环境中基于社区的参与式研究的范围界定文献综述。
J Community Genet. 2024 Dec;15(6):583-602. doi: 10.1007/s12687-024-00740-9. Epub 2024 Nov 25.
4
Raising awareness and education of genetic testing and counseling through fotonovelas among Latina women at risk for hereditary breast and ovarian cancer.通过图文小说提高有遗传性乳腺癌和卵巢癌风险的拉丁裔女性对基因检测和咨询的认识并开展相关教育。
J Community Genet. 2024 Oct;15(5):475-488. doi: 10.1007/s12687-024-00728-5. Epub 2024 Sep 6.
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Linking genetic counseling communication skills to patient outcomes and experiences using a community-engagement and provider-engagement approach: research protocol for the GC-PRO mixed methods sequential explanatory study.采用社区参与和提供者参与方法将遗传咨询沟通技巧与患者结果和体验联系起来:GC-PRO 混合方法序贯解释研究的研究方案。
BMJ Open. 2024 Apr 17;14(4):e085472. doi: 10.1136/bmjopen-2024-085472.