Haga Susanne B, Barry William T, Mills Rachel, Ginsburg Geoffrey S, Svetkey Laura, Sullivan Jennifer, Willard Huntington F
Institute for Genome Sciences and Policy, Duke University, Durham, NC 27708, USA.
Genet Test Mol Biomarkers. 2013 Apr;17(4):327-35. doi: 10.1089/gtmb.2012.0350. Epub 2013 Feb 13.
Variable health literacy and genetic knowledge may pose significant challenges to engaging the general public in personal genomics, specifically with respect to promoting risk comprehension and healthy behaviors.
We are conducting a multistage study of individual responses to genomic risk information for Type 2 diabetes mellitus. A total of 300 individuals were recruited from the general public in Durham, North Carolina: 60% self-identified as White; 70% female; and 65% have a college degree. As part of the baseline survey, we assessed genetic knowledge and attitudes toward genetic testing.
Scores of factual knowledge of genetics ranged from 50% to 100% (average=84%), with significant differences in relation to racial groups, the education level, and age. Scores were significantly higher on questions pertaining to the inheritance and causes of disease (mean score 90%) compared to scientific questions (mean score 77.4%). Scores on the knowledge survey were significantly higher than scores from European populations. Participants' perceived knowledge of the social consequences of genetic testing was significantly lower than their perceived knowledge of the medical uses of testing. More than half agreed with the statement that testing may affect a person's ability to obtain health insurance (51.3%) and 16% were worried about the consequences of testing for chances of finding a job.
Despite the relatively high educational status and genetic knowledge of the study population, we find an imbalance of knowledge between scientific and medical concepts related to genetics as well as between the medical applications and societal consequences of testing, suggesting that more effort is needed to present the benefits, risks, and limitations of genetic testing, particularly, at the social and personal levels, to ensure informed decision making.
健康素养和基因知识的差异可能给让普通公众参与个人基因组学带来重大挑战,特别是在促进风险理解和健康行为方面。
我们正在开展一项关于个体对2型糖尿病基因组风险信息反应的多阶段研究。从北卡罗来纳州达勒姆的普通公众中招募了300人:60%自认为是白人;70%为女性;65%拥有大学学位。作为基线调查的一部分,我们评估了基因知识以及对基因检测的态度。
遗传学事实知识得分在50%至100%之间(平均=84%),在种族群体、教育水平和年龄方面存在显著差异。与科学问题(平均得分77.4%)相比,关于疾病遗传和病因的问题得分显著更高(平均得分90%)。知识调查得分显著高于欧洲人群的得分。参与者对基因检测社会后果的认知显著低于对检测医学用途的认知。超过一半的人同意检测可能会影响一个人获得健康保险的能力这一说法(51.3%),16%的人担心检测对找工作机会的影响。
尽管研究人群的教育水平和基因知识相对较高,但我们发现与遗传学相关的科学和医学概念之间以及检测的医学应用和社会后果之间存在知识不平衡,这表明需要做出更多努力来呈现基因检测的益处、风险和局限性,特别是在社会和个人层面,以确保做出明智的决策。