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非裔美国人参与BRCA1/2基因突变遗传咨询和检测的比例较低:是种族差异还是仅仅是一种不同?

Low rates of African American participation in genetic counseling and testing for BRCA1/2 mutations: racial disparities or just a difference?

作者信息

Halbert Chanita Hughes, Kessler Lisa, Collier Aliya, Weathers Benita, Stopfer Jill, Domchek Susan, McDonald Jasmine A

机构信息

Center for Community-Based Research and Health Disparities, Department of Psychiatry, University of Pennsylvania, Philadelphia, 19104, USA.

出版信息

J Genet Couns. 2012 Oct;21(5):676-83. doi: 10.1007/s10897-012-9485-y. Epub 2012 Jul 12.

Abstract

Low rates of genetic counseling among African American women have generated concerns about disparities; however, to the extent that women's decisions to accept or decline counseling are consistent with their values, then lower participation may reflect preferences and not disparities. We evaluated the extent to which women were satisfied with their decision about participating in genetic counseling for BRCA1/2 mutations and identified variables that were associated significantly with satisfaction. Prospective study of decision satisfaction with 135 African American women who had a minimum 5% prior probability of having a BRCA1/2 mutation. Decision satisfaction was evaluated one month after women were offered participation in genetic counseling using a structured questionnaire. Women were satisfied with their participation decision; more than 80% reported that their decision was consistent with their family values. However, women who declined pre-test counseling had significantly lower satisfaction scores. Our findings highlight the importance ensuring that racial differences that are due to preferences and values are not misclassified as disparities in order to identify and address the root causes of disparate treatment.

摘要

非裔美国女性中基因咨询率较低引发了对差异的担忧;然而,就女性接受或拒绝咨询的决定与其价值观一致而言,较低的参与率可能反映的是偏好而非差异。我们评估了女性对参与BRCA1/2突变基因咨询的决定的满意程度,并确定了与满意度显著相关的变量。对135名非裔美国女性进行了关于决定满意度的前瞻性研究,这些女性携带BRCA1/2突变的先验概率至少为5%。在女性被提供参与基因咨询一个月后,使用结构化问卷评估决定满意度。女性对她们的参与决定感到满意;超过80%的人报告说她们的决定与家庭价值观一致。然而,拒绝预测试咨询的女性满意度得分显著较低。我们的研究结果强调了确保不因偏好和价值观导致的种族差异被错误归类为差异的重要性,以便识别和解决差异对待的根本原因。

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