Siani Merav, Ben-Zvi Assaraf Orit
Science and Technology Education Department, Ben-Gurion University of the Negev, Beer Sheva, Israel.
J Genet Couns. 2017 Dec;26(6):1254-1269. doi: 10.1007/s10897-017-0104-9. Epub 2017 Apr 25.
The aim of this study is to describe the perceptions and recommendations of Israeli genetic experts in regard to culturally competent genetic counseling. Qualitative data was collected from 15 semi-structured interviews with Israeli genetics experts. Recurring themes were identified using "thematic analysis" and coded by means of "grounded theory". Our analysis divides data from the genetic experts' interviews into four main themes: Why is culturally competent genetic counseling important? (Describing its contribution to individuals and to society); who is the recipient of culturally competent genetic counseling? (Differentiating the needs of counselees based on genetic education, cultural/religious characteristics and geographic location); what should we include in culturally competent genetic counseling? (Addressing the contents that counseling should convey); how should we perform culturally competent genetic counseling? (Addressing the methods that counseling should employ). In light of the study, we recommend lengthening the genetic counseling session so that counselors will be able to truly gauge all the prior knowledge of the counselees, their religious beliefs, norms, values and attitudes towards genetic testing. We further recommend that students continue to study genetics further into high school. Finally, we suggest adding a preparation session, similar to a prenatal course, to the genetic counseling of lay people so that their genetic knowledge, attitudes and perceptions will be enhanced, leading to more efficient genetic counseling and more informed decisions.
本研究的目的是描述以色列基因专家对具有文化胜任力的基因咨询的看法和建议。通过对15位以色列基因专家进行半结构化访谈收集定性数据。使用“主题分析”确定反复出现的主题，并通过“扎根理论”进行编码。我们的分析将基因专家访谈的数据分为四个主要主题：为什么具有文化胜任力的基因咨询很重要？（描述其对个人和社会的贡献）；谁是具有文化胜任力的基因咨询的接受者？（根据基因教育、文化/宗教特征和地理位置区分咨询对象的需求）；在具有文化胜任力的基因咨询中我们应该包括什么？（讨论咨询应传达的内容）；我们应该如何进行具有文化胜任力的基因咨询？（讨论咨询应采用的方法）。根据这项研究，我们建议延长基因咨询时间，以便咨询师能够真正了解咨询对象的所有先验知识、他们的宗教信仰、规范、价值观以及对基因检测的态度。我们还建议学生在高中阶段继续深入学习遗传学。最后，我们建议在对非专业人士的基因咨询中增加一个类似于产前课程的准备环节，以便增强他们的基因知识、态度和认知，从而实现更有效的基因咨询和更明智的决策。
