Chavez-Yenter Daniel, Vagher Jennie, Clayton Margaret F, Rindler Mary, Shukovich Masha, Kaphingst Kimberly A
Department of Communication, University of Utah, Salt Lake City, UT, USA.
Cancer Control and Population Sciences, Huntsman Cancer Institute, Salt Lake City, UT, USA.
J Community Genet. 2021 Oct;12(4):617-630. doi: 10.1007/s12687-021-00542-3. Epub 2021 Aug 20.
Genetic testing is becoming an integral part of healthcare, but evidence suggests that both race and ethnicity influence access to and utilization of genetic testing. Given this barrier, data are needed on the perceptions of genetic testing in racial and ethnic minority groups. The purpose of this study was to explore the perceptions of three types of genetic testing (genetic testing for adult-onset conditions, prenatal screening, and newborn screening) in a sample of US participants who identified as White, Pacific Islander, and Latinx (10 dyads from each group for 60 participants total). Data were collected through semi-structured dyadic interviews and assessed using thematic analysis. The major themes were knowledge as empowering, knowledge as stressful, and predictive nature of prenatal testing and newborn screening. Some differences were seen in themes by race and ethnicity. A sense of collective and familial health appeared to be a more important theme for Pacific Islander and Latinx participants compared to White participants. Adult-onset genetic testing was viewed variously across all groups with some noting how it may increase anxiety, particularly if the disease screened for was unable to be prevented with action. All three groups reported on the positives of prenatal testing and newborn screening yet often were confused on the differences between them. This study presents novel perceptions of genetic testing in participants from diverse communities across three types of genetic testing. Genetic healthcare providers should incorporate participants' perceptions, values, and beliefs into their counseling delivery as a way to engage with diverse communities.
基因检测正成为医疗保健的一个重要组成部分,但有证据表明,种族和族裔都会影响基因检测的获取和使用。鉴于这一障碍,我们需要了解种族和族裔少数群体对基因检测的看法。本研究的目的是在一个由白人、太平洋岛民和拉丁裔组成的美国参与者样本中(每组10个二元组,共60名参与者),探讨对三种类型基因检测(成人发病疾病的基因检测、产前筛查和新生儿筛查)的看法。通过半结构化二元访谈收集数据,并使用主题分析进行评估。主要主题包括知识带来力量、知识带来压力以及产前检测和新生儿筛查的预测性质。在不同种族和族裔的主题中发现了一些差异。与白人参与者相比,集体和家庭健康意识对太平洋岛民和拉丁裔参与者来说似乎是一个更重要的主题。所有群体对成人发病基因检测的看法各不相同,一些人指出它可能会增加焦虑,特别是如果所筛查的疾病无法通过行动预防的话。所有三个群体都报告了产前检测和新生儿筛查的积极方面,但往往对它们之间的差异感到困惑。本研究呈现了来自不同社区的参与者对三种类型基因检测的新颖看法。基因医疗保健提供者应将参与者的看法、价值观和信念纳入他们的咨询服务中,以此作为与不同社区互动的一种方式。