Jones Tarsha, Howard Heather, Freeman-Costin Katherine, Creighton Ana, Wisdom-Chambers Karen, Underhill-Blazey Meghan
Christine E. Lynn College of Nursing, Florida Atlantic University, 777 Glades Road, Boca Raton, FL, 33431, USA.
College for Design and Social Inquiry, Florida Atlantic University, Boca Raton, Florida, 33431, USA.
J Community Genet. 2021 Jul;12(3):415-429. doi: 10.1007/s12687-021-00507-6. Epub 2021 Feb 8.
The vast majority of (BRCA1/2) genetic testing has been conducted in White women, in particular Ashkenazi Jewish women, with limited information available for Black and Hispanic women. Understanding perspectives of those who are underserved is critical to developing interventions to support inclusive approaches to genetic testing. This qualitative study explored knowledge and perceptions of BRCA1/2 genetic testing among diverse women in South Florida. We also explored participants' information needs. Convenience sampling was used to recruit a diverse group of 15 women with a personal or family history of breast cancer. We conducted semi-structured interviews and used grounded theory method to analyze the data. Five themes were identified: (1) lacking awareness and knowledge of BRCA1/2 genetic testing and results among Black women, (2) perceiving BRCA1/2 genetic testing as beneficial to themselves and a way to be proactive about cancer risk, (3) perceiving BRCA1/2 genetic testing as beneficial to family members, (4) interactions with healthcare providers and the healthcare system that shape genetic testing experiences, and (5) information needs for reducing cancer risk and promoting health. Our findings suggest that diverse underserved women perceived genetic testing as beneficial to themselves and family members. Women needed more information about the BRCA genes and genetic testing, prevention strategies, and the latest breast cancer research. Healthcare providers, particularly nurse practitioners, need to engage diverse high-risk women in discussions about their cancer risk, address unmet information needs, and, in particular, educate Black women about the benefits of pursuing genetic testing.
绝大多数（BRCA1/2）基因检测是在白人女性中进行的，尤其是阿什肯纳兹犹太女性，而针对黑人女性和西班牙裔女性的相关信息有限。了解那些未得到充分服务人群的观点对于制定干预措施以支持基因检测的包容性方法至关重要。这项定性研究探讨了南佛罗里达州不同女性对BRCA1/2基因检测的了解和看法。我们还探讨了参与者的信息需求。采用便利抽样法招募了15名有乳腺癌个人或家族病史的不同女性。我们进行了半结构化访谈，并使用扎根理论方法分析数据。确定了五个主题：（1）黑人女性对BRCA1/2基因检测及其结果缺乏认识和了解；（2）认为BRCA1/2基因检测对自己有益，是一种积极应对癌症风险的方式；（3）认为BRCA1/2基因检测对家庭成员有益；（4）与医疗服务提供者及医疗系统的互动塑造了基因检测体验；（5）降低癌症风险和促进健康的信息需求。我们的研究结果表明，未得到充分服务的不同女性认为基因检测对自己和家庭成员有益。女性需要更多关于BRCA基因、基因检测、预防策略以及最新乳腺癌研究的信息。医疗服务提供者，尤其是执业护士，需要让不同的高风险女性参与关于她们癌症风险的讨论，满足未得到满足的信息需求，特别是要向黑人女性宣传进行基因检测的益处。
