Racial and ethnic differences in genetic counseling experiences and outcomes in the United States: A systematic review

J Genet Couns. 2020 Apr;29(2):147-165. doi: 10.1002/jgc4.1230. Epub 2020 Mar 6.

Abstract

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.

Keywords: attitudes; beliefs; counseling techniques; disparities; diversity; genetic counseling; genetics services; systematic review; underrepresented populations.

Publication types

  • Systematic Review

MeSH terms

  • Delivery of Health Care / organization & administration
  • Ethnic Groups*
  • Genetic Counseling*
  • Humans
  • Minority Groups*
  • United States