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

Sabrina V. Southwick, Riley Esch, Rachel Gasser, Deborah Cragun, Krista Redlinger-Grosse, Scott Marsalis, Heather A. Zierhut

Research output: Contribution to journalArticlepeer-review

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.

Original languageEnglish (US)
Pages (from-to)147-165
Number of pages19
JournalJournal of Genetic Counseling
Volume29
Issue number2
DOIs
StatePublished - Apr 1 2020

Bibliographical note

Funding Information:
Riley Esch's work is under the advisement of Dr. Eric A Hendrickson at the University of Minnesota with funding from the National Institutes of Health. Sabrina Southwick, Rachel Gasser, Deborah Cragun, Krista Redlinger‐Grosse, Scott Marsalis, and Heather Zierhut declare that they have no conflict of interest.

Publisher Copyright:
© 2020 National Society of Genetic Counselors

Copyright:
Copyright 2020 Elsevier B.V., All rights reserved.

Keywords

  • attitudes
  • beliefs
  • counseling techniques
  • disparities
  • diversity
  • genetic counseling
  • genetics services
  • systematic review
  • underrepresented populations

PubMed: MeSH publication types

  • Journal Article
  • Systematic Review

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