Abstract
BackgroundWith the rapid advances in gene technologies in recent years, the potential benefits of precision medicine (PM) may spread unevenly to disadvantaged populations, such as Hispanics/Latinos.The objective of this study was to explore patient-level barriers and facilitators to dissemination and adoption of PM among Hispanics/Latinos, including knowledge and awareness.MethodsSelf-identified Hispanics/Latinos from diverse countries in Latin America (N = 41) participated in the study. Using a cross-sectional observational qualitative research design, six focus groups and a demographic questionnaire were collected in English and Spanish. Qualitative content analysis was utilized to code the transcripts and identify emerging themes.ResultsHispanics/Latinos never heard of and had no knowledge about PM. Barriers to dissemination and adoption of PM included lack of health insurance, financial burden, participants’ immigration status, distrust of government, limited English proficiency, low literacy levels, cultural norms, fear about genetic testing results, lack of transportation, newness of PM, and lack of information about PM. Facilitators included family support; information provided in Spanish; use of plain language and graphics; assistance programs for uninsured; trust in physicians, healthcare staff, well-known hospitals, academic institutions, and health care providers and community organization as sources of reliable information; personal motivation, and altruism or societal benefit.ConclusionsCulturally-and linguistically-tailored, low-literacy educational material about PM should be created in English and Spanish. Future research should examine provider-level and system-level barriers and facilitators to implementation and adoption of PM among Hispanic/Latino patients.
Highlights
With the rapid advances in gene technologies in recent years, the potential benefits of precision medicine (PM) may spread unevenly to disadvantaged populations, such as Hispanics/Latinos
When healthcare providers offer genetic testing to patient to determine their risk for a disease or pharmacogenomic testing to guide the selection and dosing of medications, patients must decide if they consent to the testing and if they want to know the results
Awareness of the term “precision medicine” among adults in the United States (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]
Summary
With the rapid advances in gene technologies in recent years, the potential benefits of precision medicine (PM) may spread unevenly to disadvantaged populations, such as Hispanics/Latinos. The objective of this study was to explore patient-level barriers and facilitators to dissemination and adoption of PM among Hispanics/Latinos, including knowledge and awareness. The continued diffusion of PM innovations into healthcare practice is influenced by many factors, including the willingness of patients to adopt new PM approaches, in relation to the use of their genetic information [5]. 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 found Blacks and Hispanics/Latinos had lower factual knowledge about PM and more concerns about genetic testing compared to Whites
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