Southwick Sabrina V, Esch Riley, Gasser Rachel, Cragun Deborah, Redlinger-Grosse Krista, Marsalis Scott, Zierhut Heather A
Department of Genetics, Cell Biology, and Development, University of Minnesota, Minneapolis, MN, USA.
Department of Biochemistry, Molecular Biology, and Biophysics, University of Minnesota, Minneapolis, MN, USA.
J Genet Couns. 2020 Apr;29(2):147-165. doi: 10.1002/jgc4.1230. Epub 2020 Mar 6.
As genetic counseling services expand and reach a wider catchment of the population, there is a critical need to better understand the impact of services on a greater diversity of patients. We conducted a systematic review to evaluate genetic counseling experiences and outcomes among racial and ethnic minorities. Six databases extracted articles published from 2005 to 2019 that assessed genetic counseling participation, knowledge and awareness, motivators, barriers, perceptions, and outcomes for racial and ethnic minority populations in the United States. Genetic counseling outcomes were categorized using the Framework for Outcomes of Clinical commUnication Services. A total of 1,227 abstracts were identified, of which 23 papers met inclusion criteria. Results suggest the possibility of racial and ethnic differences in some genetic counseling experiences and outcomes but noted differences were not adequately replicated between studies. The few included studies differed greatly in aims, methods, and results, which made comparison across study designs challenging and effectively barred thematic analysis. Additional research is needed that includes more study populations and settings with patients of diverse racial and ethnic backgrounds, as well as more structured study designs that allow for elucidations of differences between White and non-White populations.
随着遗传咨询服务的扩展并覆盖更广泛的人群,迫切需要更好地了解这些服务对更多样化患者的影响。我们进行了一项系统综述,以评估种族和少数民族群体的遗传咨询经历及结果。通过六个数据库检索了2005年至2019年发表的文章,这些文章评估了美国种族和少数民族群体参与遗传咨询的情况、知识与意识、动机、障碍、看法及结果。使用临床沟通服务结果框架对遗传咨询结果进行分类。共识别出1227篇摘要,其中23篇论文符合纳入标准。结果表明,在某些遗传咨询经历和结果方面可能存在种族和民族差异,但研究之间所指出的差异并未得到充分重复。少数纳入研究在目的、方法和结果上差异很大,这使得跨研究设计进行比较具有挑战性,并有效地阻碍了主题分析。需要开展更多研究,纳入更多具有不同种族和民族背景患者的研究人群和环境,以及采用更具结构性的研究设计,以便阐明白人和非白人人群之间的差异。