National Human Genome Research Institute, 31 Center Drive, Building 31, Room B1B36, Bethesda, MD, 20892, USA; Johns Hopkins Bloomberg School of Public Health, 615 N Wolfe St, Baltimore, MD, 21205, USA.
Johns Hopkins Bloomberg School of Public Health, 615 N Wolfe St, Baltimore, MD, 21205, USA.
Soc Sci Med. 2021 Feb;271:112179. doi: 10.1016/j.socscimed.2019.02.030. Epub 2019 Feb 26.
As medical genetic services become a standard part of healthcare, it will become increasingly important to understand how individuals interpret and use genetic information. Exploring lay beliefs of disease inheritance that differ along cultural lines is one research strategy. The purpose of this study was to describe conceptualizations of disease inheritance held by members of the Latina immigrant population in the United States. Semi-structured interviews were employed to gather qualitative, exploratory data from 20 Latina immigrant women. All interviews were conducted in Spanish, and thematic analysis was used to analyze interview transcripts. Demographic and acculturation data were also collected and analyzed. The final sample was diverse in age, time lived in the United States, country of birth, and education level. From participant interviews, the authors identified one dominant model of disease inheritance to which most participants ascribed as well as two non-dominant models. The main model was characterized by a focus on the ability to modify an underlying disease risk, especially in the case of hereditary predisposition to common complex disease. Of the non-dominant models, one focused on genetic disease as extraordinary and less modifiable while the other placed less emphasis on the role of genes in health and greater emphasis on non-genetic factors. Across these models, participants expressed their uncertainty about their understanding of genetics. Many of the themes that arose from the interviews, including uncertainty in their own understanding of genetics, were similar to those seen in studies among other populations. Importantly, participants in this study demonstrated a lack of genetic fatalism, which may allay fears that explaining the role of genetics in common health conditions will reduce uptake of positive health behaviors. These findings have practice implications for healthcare providers communicating genetic information to Latina immigrants.
随着医学遗传学服务成为医疗保健的标准组成部分，了解个人如何解释和使用遗传信息将变得越来越重要。探索文化差异导致的疾病遗传观念是一种研究策略。本研究的目的是描述美国拉丁裔移民群体成员对疾病遗传的概念化。采用半结构式访谈从 20 名拉丁裔移民女性中收集定性、探索性数据。所有访谈均以西班牙语进行，采用主题分析对访谈记录进行分析。还收集和分析了人口统计学和文化适应数据。最终样本在年龄、在美国生活的时间、出生国和教育水平方面具有多样性。通过参与者访谈，作者确定了大多数参与者归因的一种主要疾病遗传模型以及两种非主要模型。主要模型的特点是强调改变潜在疾病风险的能力，特别是在遗传性易患常见复杂疾病的情况下。在这两种非主要模型中，一种侧重于遗传疾病的特殊性和较少的可变性，另一种则较少强调基因在健康中的作用，而更强调非遗传因素。在这些模型中，参与者表达了他们对自己遗传理解的不确定性。从访谈中出现的许多主题，包括对自己遗传学理解的不确定性，与其他人群研究中看到的主题相似。重要的是，本研究中的参与者表现出缺乏遗传宿命论，这可能会消除人们对解释遗传学在常见健康状况中的作用会降低积极健康行为的接受度的担忧。这些发现对医疗保健提供者向拉丁裔移民传播遗传信息具有实践意义。
