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

Knowledge and perceptions of the genetic counseling profession among a national cross‐sectional sample of U.S. adults

“…This was true after controlling for educational attainment and income, suggesting there are additional barriers to awareness of the GC profession beyond just educational differences as has been reported previously (Ladson-Billings, 2006). Non-White individuals may not have the opportunities that White individuals do to learn about or be referred to GC as often as do White patients (Ladson-Billings, 2006;Southwick et al, 2020). This is demonstrated by two recent studies; one study reported that Black patients with young-onset colorectal cancer were less likely to be referred to and attend genetic counseling sessions compared with White patients (Dharwadkar et al, 2020) and the second study found that Non-Hispanic White patients were more likely to be referred for cancer genetic services based on family history when compared to Non-Hispanic Black, Hispanic, and Asian patients (Chaoman-Davis et al,…”

The NYCKidSeq project: study protocol for a randomized controlled trial incorporating genomics into the clinical care of diverse New York City children

“…Other studies have explored the use of narrative educational tools for at-risk Latinas to improve psychosocial outcomes [19,20]. The vast majority of literature on genetic counseling interventions in diverse populations has focused mainly on cancer genetics [21], and there is a dearth of literature on barriers to communication in racially and ethnically diverse pediatric patient populations and their families. Digital applications that display personalized genetic testing results in a way that addresses lowhealth literacy, includes images, and provides information in both English and Spanish can be leveraged to improve understanding.…”

The NYCKidSeq project: study protocol for a randomized controlled trial incorporating genomics into the clinical care of diverse New York City children

“…All participants are followed by a physician in the participating institutions. Patient participants are 0-21 years of age; young adults (18-21) who are cognitively intact are included in this study provided that their parent(s) or legal guardian(s) also agree to participate. All participants have a currently undiagnosed, suspected genetic cause of their specific neurologic, immunologic, or cardiac disorders.…”

“…Other studies have explored the use of narrative educational tools for atrisk Latinas to improve psychosocial outcomes (19,20). The vast majority of literature on genetic counseling interventions in diverse populations has focused mainly on cancer genetics (21), and there is a dearth of literature on barriers to communication in racially and ethnically diverse pediatric patient populations and their families. Digital applications that display personalized genetic testing results in a way that addresses low-health literacy, includes images, and provides information in both English and Spanish can be leveraged to improve understanding.…”