Buseh A, Kelber S, Millon-Underwood S, Stevens P, Townsend L
College of Nursing, University of Wisconsin-Milwaukee, Milwaukee, Wis., USA.
Public Health Genomics. 2014;17(1):33-42. doi: 10.1159/000356013. Epub 2013 Dec 24.
Reasons for low participation of ethnic minorities in genetic studies are multifactorial and often poorly understood. Based on published literature, participation in genetic testing is low among Black African immigrants/refugees although they are purported to bear disproportionate disease burden. Thus, research involving Black African immigrant/refugee populations that examine their perspectives on participating in genetic studies is needed.
This report examines and describes the knowledge of medical genetics, group-based medical mistrust, and future expectations of genetic research and the influence of these measures on the perceived disadvantages of genetic testing among Black African immigrants/refugees.
Using a cross-sectional survey design, a nonprobability sample (n = 212) of Black African immigrants/refugees was administered a questionnaire. Participants ranged in age from 18 to 61 years (mean = 38.91, SD = 9.78). The questionnaire consisted of 5 instruments: (a) sociodemographic characteristics, (b) Knowledge of Medical Genetics scale, (c) Group-Based Medical Mistrust Scale, (d) Future Expectations/Anticipated Consequences of Genetics Research scale, and (e) Perceived Disadvantages of Genetic Testing scale.
Participants were concerned that genetic research may result in scientists 'playing God,' interfering with the natural order of life. In multivariate analyses, the perceived disadvantages of genetic testing increased as medical mistrust and anticipated negative impacts of genetic testing increased. Increase in genetic knowledge contributed to a decrease in perceived disadvantages.
Our findings suggest that recruitment of Black African immigrants/refugees in genetic studies should address potential low knowledge of genetics, concerns about medical mistrust, the expectations/anticipated consequences of genetic research, and the perceived disadvantages of genetic testing.
少数族裔参与基因研究的比例较低，原因是多方面的，且往往鲜为人知。根据已发表的文献，尽管据报道非洲黑人移民/难民承受着不成比例的疾病负担，但他们参与基因检测的比例较低。因此，需要开展涉及非洲黑人移民/难民群体的研究，以考察他们对参与基因研究的看法。
本报告考察并描述了非洲黑人移民/难民的医学遗传学知识、基于群体的医疗不信任感、对基因研究的未来期望，以及这些因素对他们所认为的基因检测弊端的影响。
采用横断面调查设计，对212名非洲黑人移民/难民的非概率样本进行问卷调查。参与者年龄在18至61岁之间（平均年龄=38.91岁，标准差=9.78）。问卷由5个部分组成：（a）社会人口学特征，（b）医学遗传学知识量表，（c）基于群体的医疗不信任感量表，（d）基因研究的未来期望/预期后果量表，以及（e）基因检测的感知弊端量表。
参与者担心基因研究可能导致科学家“扮演上帝”，干扰生命的自然秩序。在多变量分析中，随着医疗不信任感和基因检测预期负面影响的增加，基因检测的感知弊端也会增加。基因知识的增加有助于减少感知弊端。
我们的研究结果表明，在招募非洲黑人移民/难民参与基因研究时，应解决他们可能存在的遗传学知识不足、对医疗不信任的担忧、基因研究的期望/预期后果，以及基因检测的感知弊端等问题。
