Racial and ethnic differences in knowledge and attitudes about genetic testing in the US: Systematic review

Abstract

Precision medicine has grown over the past 20 years with the availability of genetic tests and has changed the one‐size‐fits‐all paradigm in medicine. Precision medicine innovations, such as newly available genetic tests, could potentially widen racial and ethnic disparities if access to them is unequal and if interest to use them differs across groups. The objective of this systematic review was to synthesize existing evidence on racial and ethnic differences in knowledge of and attitudes toward genetic testing among adult patients and the general public in the US, focusing on research about the use of genetic testing in general, not disease‐specific tests. Twelve articles published in 1997–2017 met inclusion and exclusion criteria, with 10 including knowledge variables and seven including attitude variables. Studies found consistent patterns of lower awareness of genetic testing in general among non‐Whites compared to Whites, lower factual knowledge scores among Blacks and Hispanics/Latinos, and mixed findings of differences in awareness of direct‐to‐consumer (DTC) genetic testing or the term precision medicine. Blacks, Hispanics/Latinos, and non‐Whites generally had more concerns about genetic testing than Whites. The findings suggest that patients and the general public need access to culturally appropriate educational material about the use of genetic testing in precision medicine.

Attitudes toward Precision Treatment of Smoking in the Southern Community Cohort Study

“…Research in other healthcare contexts shows racial/ethnic minorities have more concerns about genetic testing and precision medicine than Whites, believing genetic testing or precision medicine may be misused, lead to racial discrimination, or do more harm than good (21,22). However, preliminary findings support the acceptability of precision approaches for smoking among minorities.…”

Community education to enhance the more equitable use of precision medicine in Northern Manhattan

“…When evaluating comprehension by language in which the education was conducted, Spanish‐speaking participants scored significantly lower at pre‐test than did English speakers. Recent large national studies assessing knowledge surrounding genetic testing found that compared to Whites, minorities are less knowledgeable of genetic testing (Canedo et al, 2019; Haga, O'Daniel, Tindall, Lipkus & Agans, 2012; Singer, Couper, Raghunathan, Van Hoewyk & Antonucci, 2008). A retrospective evaluation of the General Social Survey at three time points (1990, 1996, and 2004) showed that while the proportion of respondents claiming to know ‘a great deal’ about genetic testing has increased (from 12.8% in 1990 to 18.1% in 2004), 67.4% of respondents know ‘not very much’ and 14.1% know ‘nothing at all’.…”

“…How low educational attainment, poor English proficiency, and limited health literacy and numeracy (Giuse et al, 2016) affect the understanding of complex genetic information and, thus, the uptake of these new treatments is of great concern. Accumulating evidence demonstrates that culturally diverse populations have limited understanding of genetics and genetic testing and are concerned about the purpose of genetic testing and the information this testing provides (Canedo, Miller, Myers & Sanderson, 2019). Minorities fear genetic discrimination and worry how this information may be used/misused (Catz et al, 2005; Hamilton et al, 2016), which impacts genetic testing.…”

Barriers and facilitators to dissemination and adoption of precision medicine among Hispanics/Latinos

“…Awareness of the term "precision medicine" among adults in the US is low, estimated at less than 25% in a recent study [9], even though approximately 80% of adults in the U.S. report that they have heard of genetic tests, which are a key component of PM [10]. A recent systematic review of studies published through 2017 [11] identified no studies that compared racial/ethnic differences in awareness of PM, though one study found no difference between Blacks and Whites in awareness of the related term "personalized medicine" [12]. This review also found Blacks and Hispanics/Latinos had lower factual knowledge about PM and more concerns about genetic testing compared to Whites.…”