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东正教犹太思想领袖对BRCA突变的见解:一项描述性研究。

Orthodox Jewish Thought Leaders' Insights Regarding BRCA Mutations: A Descriptive Study.

作者信息

Bressler Toby, Popp Beth

机构信息

Maimonides Medical Center, Brooklyn, NY.

出版信息

J Oncol Pract. 2017 Apr;13(4):e303-e309. doi: 10.1200/JOP.2016.015503. Epub 2016 Nov 22.

DOI:10.1200/JOP.2016.015503
PMID:27875073
Abstract

PURPOSE

To examine the factors that influence Orthodox Jewish (OJ) thought leaders' perceptions of genetic counseling and testing for BRCA mutations. The specific aims of this study were to describe (1) OJ thought leaders' views on genetic counseling and testing for BRCA mutation status and (2) insights into this high-risk faith-based minority group and their beliefs about counseling and testing for BRCA mutations.

METHODS

In-depth focus groups and demographic questionnaires were used in this descriptive, qualitative study, which was performed in the cancer center of a 750-bed community teaching hospital in Brooklyn, New York. Participants included 17 OJ thought leaders in a large metropolitan area in the northeastern United States.

RESULTS

Four themes emerged that describe the key components of the views of OJ thought leaders regarding genetic counseling and testing for BRCA mutation carriers. There was a high level of concern about cancer, recognition that community norms shift, acknowledgment of the role of the rabbi in medical decision making, and concern about the balance between determinism and personal responsibility in utilizing this health care service.

CONCLUSION

The identification of social contributors to the utilization of genetic counseling and testing, as well as identification of solutions to optimize utilization of BRCA testing, supports the philosophic premise or conceptual model that faith-based leaders are crucial to the promotion of culturally sensitive health care delivery. Incorporating faith-based leaders early in health care strategic planning and implementation can translate into communities better utilizing health-related services.

摘要

目的

探讨影响东正教犹太教(OJ)思想领袖对BRCA基因突变的遗传咨询和检测认知的因素。本研究的具体目标是描述:(1)OJ思想领袖对BRCA基因突变状态的遗传咨询和检测的看法;(2)深入了解这个基于信仰的高危少数群体及其对BRCA基因突变咨询和检测的信念。

方法

在纽约布鲁克林一家拥有750张床位的社区教学医院的癌症中心进行了这项描述性定性研究,采用了深入焦点小组和人口统计问卷。参与者包括美国东北部一个大都市地区的17位OJ思想领袖。

结果

出现了四个主题,描述了OJ思想领袖对BRCA基因突变携带者的遗传咨询和检测观点的关键组成部分。对癌症高度关注,认识到社区规范的转变,承认拉比在医疗决策中的作用,以及在利用这项医疗服务时对决定论和个人责任之间平衡的关注。

结论

确定遗传咨询和检测利用的社会影响因素,以及确定优化BRCA检测利用的解决方案,支持了基于信仰的领袖对促进具有文化敏感性的医疗服务至关重要这一哲学前提或概念模型。在医疗战略规划和实施早期纳入基于信仰的领袖可以促使社区更好地利用与健康相关的服务。

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