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“寄希望于更好的机会”:黑人前列腺癌患者对基因咨询与检测的看法

"Hope at a better chance": perspectives on genetic counseling and testing among black individuals with prostate cancer.

作者信息

Prindeville Breanne, Szymaniak Brittany M, Greenberg Samantha E, Murphy Adam B, Ross Ashley E, Duquette Debra

机构信息

Center for Genetic Medicine, Feinberg School of Medicine, Northwestern University, Chicago, IL, USA.

Mark R. Neaman Center for Personalized Medicine, Endeavor Health, Evanston, IL, USA.

出版信息

J Community Genet. 2025 Mar 17. doi: 10.1007/s12687-025-00785-4.

DOI:10.1007/s12687-025-00785-4
PMID:40095207
Abstract

Black individuals have the highest prostate cancer (PCa) incidence and mortality rates of any racial or ethnic group. Racial disparities persist in the understanding and uptake of genetics services, while the perspectives of Black individuals with PCa regarding genetic counseling and germline genetic testing for inherited cancer risk (GC/GT) remains understudied. This qualitative study explored attitudes, facilitators, and barriers to awareness, interest, and uptake of GC/GT among Black individuals with PCa. Eight individuals who self-identified as African American and/or Black with a personal history of PCa participated in individual telephone interviews using a semi-structured interview guide. Interview transcripts were analyzed using both an inductive and deductive coding approach, constant comparison, and selective coding. Five major themes were identified: (1) uncertainty surrounding personal relevance of GC/GT, (2) family influence and impact of GC/GT, (3) healthcare providers and institutions as gatekeepers of GC/GT, (4) community identity, influence, and impact of GC/GT, and (5) systemic barriers to GC/GT exemplify larger structural constraints. A key finding was the influence of community, a collective identity among Black individuals and a desire to benefit the Black community, in motivating research participation and pursuit of GC/GT to lessen racial disparities in PCa. Individual, interpersonal, institutional, community, and structural factors are both barriers and facilitators to awareness, interest, and uptake of GC/GT. Multilevel interventions such as communicating personal, familial, and community implications of GC/GT, improving patient-provider relationships and genetics education, and addressing systemic barriers are necessary to increase efficacy, utility, and equity in GC/GT.

摘要

在所有种族或族裔群体中,黑人的前列腺癌(PCa)发病率和死亡率最高。在对基因检测服务的理解和接受方面,种族差异依然存在,而患有前列腺癌的黑人个体对遗传性癌症风险的遗传咨询和种系基因检测(GC/GT)的看法仍未得到充分研究。这项定性研究探讨了患有前列腺癌的黑人个体对GC/GT的认知、兴趣和接受方面的态度、促进因素和障碍。八名自我认定为非裔美国人或黑人且有前列腺癌个人病史的个体,使用半结构化访谈指南参与了个人电话访谈。访谈记录采用归纳和演绎编码方法、持续比较和选择性编码进行分析。确定了五个主要主题:(1)GC/GT与个人相关性的不确定性;(2)家庭对GC/GT的影响;(3)医疗服务提供者和机构作为GC/GT的把关人;(4)社区身份、GC/GT的影响;(5)GC/GT的系统性障碍体现了更大的结构限制。一个关键发现是社区的影响,即黑人个体之间的集体身份认同以及造福黑人社区的愿望,在激励研究参与和追求GC/GT以减少前列腺癌的种族差异方面发挥了作用。个人、人际、机构、社区和结构因素既是GC/GT认知、兴趣和接受的障碍,也是促进因素。为了提高GC/GT的有效性、实用性和公平性,有必要采取多层次干预措施,如传达GC/GT对个人、家庭和社区的影响,改善医患关系和基因教育,并消除系统性障碍。

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本文引用的文献

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