Malen Rachel, Knerr Sarah, Delgado Fernanda, Fullerton Stephanie M, Thompson Beti
Cancer Prevention Program, Fred Hutchinson Cancer Research, Seattle, WA, USA.
Department of Health Services, University of Washington, Seattle, WA, USA.
J Community Genet. 2016 Jan;7(1):91-6. doi: 10.1007/s12687-015-0245-1. Epub 2015 Jul 4.
Disseminating the results of transdisciplinary health disparities research will increasingly involve discussing family health history and/or genetic information with study participants and their communities. Often, individuals' familiarity and comfort with these topics will be unclear. To inform the dissemination activities of a Center for Population Health and Health Disparities (CPHHD) studying multilevel determinants of breast cancer disparities in Latinas, we talked with Spanish-speaking Mexican-Americans from a rural agricultural community about family health history, genetics, and disease risk. We found that participants had limited genetic literacy but were familiar with some concepts related to family health history. Participants emphasized the role of individual behavior in shaping health and expressed a strong desire for health-related information. This included genetic information about future disease risk, which participants were previously unaware of but thought could be useful for disease prevention. These findings suggest that for research dissemination to facilitate health promotion, gaps in knowledge, particularly genetic knowledge, will need to be overcome. Outreach to underserved Latino communities should take advantage of this existing knowledge of family health history and strong desire for health information, but also take care to not overstate the significance of unreplicated or low-penetrance genetic associations.
传播跨学科健康差异研究的结果将越来越多地涉及与研究参与者及其社区讨论家族健康史和/或基因信息。通常,个人对这些话题的熟悉程度和接受程度并不明确。为了为一个研究拉丁裔乳腺癌差异的多层次决定因素的人口健康与健康差异中心(CPHHD)的传播活动提供信息,我们与一个农村农业社区的说西班牙语的墨西哥裔美国人讨论了家族健康史、遗传学和疾病风险。我们发现参与者的基因知识有限,但对一些与家族健康史相关的概念很熟悉。参与者强调个人行为在塑造健康方面的作用,并表达了对健康相关信息的强烈渴望。这包括关于未来疾病风险的基因信息,参与者此前并不知晓,但认为这可能对疾病预防有用。这些发现表明,为了使研究传播促进健康促进,需要克服知识差距,特别是基因知识方面的差距。对服务不足的拉丁裔社区进行外展时,应利用现有的家族健康史知识和对健康信息的强烈渴望,但也要注意不要夸大未经验证或低 penetrance 基因关联的重要性。