Abstract
Cancer genomic services (CGS) can support genetic risk‐stratified cancer prevention and treatment. Racial/ethnic minority groups are less likely to access and utilize CGS compared with non‐Hispanic Whites. Little research has described characteristics of interventions targeted at CGS among Latinos. This scoping review aimed to (1) describe interventions promoting uptake of CGS among Latinos in the United States and Latin America, (2) describe intervention adaptations for Latino participants, and (3) summarize intervention implementation factors suggested by reach, effectiveness, adoption, implementation, and maintenance (RE‐AIM) framework. We conducted a search in English and Spanish of literature published between 2005 and 2022 across PubMed and Latin American and Caribbean Health Sciences Literature databases. Sixteen of 2344 papers met the inclusion criteria of the analysis. Efforts to promote CGS among Latino communities were limited in the US and lower in Latin America. This review highlights the need for in‐depth exploration of acculturation‐informed interventions and better reporting on implementation factors to enhance their scalability across diverse settings.
Keywords: cancer, evaluation, genetic counseling, genetic testing, Latino health, RE‐AIM
Little research has described characteristics of interventions targeted at cancer genomic services (CGS) among Latinos. This scoping review aimed to (1) describe interventions promoting uptake of CGS among Latinos in the United States and Latin America, (2) describe intervention adaptations for Latino participants, and (3) summarize intervention implementation factors suggested by reach, effectiveness, adoption, implementation, and maintenance (RE‐AIM) framework. We conducted a search in English and Spanish of literature published between 2005 and 2022 across PubMed and Latin American and Caribbean Health Sciences Literature databases.

1. INTRODUCTION
The Latino population in the United States (US) is diverse, consisting of members with ancestry from multiple countries. 1 Since 1970, the Latino population has grown more than sixfold and now makes up 19% (62.5 million individuals) of the national population. 2 Cancer is the leading cause of death among this group, accounting for 20% of deaths. 3 Earlier studies report that to non‐Hispanic Whites and Latinas have a higher incidence of triple‐negative breast cancer and are diagnosed at younger ages, factors that are associated with a higher likelihood of carrying hereditary genetic variants that increase cancer risk. 4 , 5 , 6 , 7 However, present research indicates that Latinas have a lower incidence and mortality rate of triple‐negative breast cancer compared with non‐Hispanic White women, suggesting that there are research gaps in knowledge surrounding hereditary cancer‐related incidence, mortality, and screening practices among Latinas. 8 , 9 , 10 Despite this, the uptake of family history screening, genetic counseling, and genetic testing among Latina women remains low, even in specialty settings. 11 , 12 , 13 As the Latino population continues to increase in the US, disparities in hereditary cancer‐associated cases and premature deaths will continue to widen. 2
Cancer genomic services (CGS) can support risk management and reduce hereditary cancer‐related mortality. 14 , 15 These services have notable benefits particularly relevant to the Latino population. For example, brief family history assessments endorsed by national and public health organizations (e.g., United States Preventative Services Task Force [USPSTF] and Centers for Disease Control and Prevention [CDC]) now enable population‐based screening to identify families at high risk for BRCA‐associated cancers and Lynch syndrome (LS). 16 , 17 , 18 , 19 , 20 The National Comprehensive Cancer Network (NCCN) recommends genetic testing for patients diagnosed with colorectal cancer under the age of 50 and those with a personal history of tumor testing or a family history suggesting Lynch Syndrome. 21 Implementing cancer genetic screening is critical as individuals who carry a BRCA1/2 mutation have significantly increased lifetime risks for breast (50%–80%) and ovarian cancer (10%–40%), and individuals with LS have an increased lifetime risk of developing colorectal cancer (22%–74%), endometrial cancer (15%–71%), and ovarian cancer (4%–20%). 22 , 23 , 24 Potentially lifesaving prevention and treatment options are available to mutation carriers; thus, early detection is key to improvement of cancer outcomes (e.g., risk‐reducing surgeries, conventional chemotherapy, enhance screening). 5 , 23 , 24 However, Spanish‐preferring Latinas are half as likely as Whites to have discussed genetic counseling (GC) or genetic testing (GT) with a health provider. English‐preferring Latinas and Spanish‐preferring Latinas have greater odds of having unmet need for discussing GT with providers (OR = 2.44 and OR = 7.28, respectively). 25 Similarly, findings from a national health survey found that among those who reported completing GT, only 23% of Latinos reported completing GT for cancer screening compared 42% of non‐Hispanic White respondents. 26 The Hispanic Community Health Study, a longitudinal cohort study, found that only 3.3% of participants reported ever completing GT. 27 These findings demonstrate the underutilization of CGS among the Latino community. Efforts to expand CGS beyond urban cancer specialty settings that serve predominantly non‐Hispanic White populations have been exceedingly slow, which will likely lead to further worsening of health disparities. 28 , 29 , 30 , 31
Various factors may contribute to the low uptake of CGS, such as cost, inadequate insurance coverage, lack of awareness on the part of the patient and/or provider, and limited availability of screening services. 32 Additionally, language barriers and immigration status may pose unique challenges for Latinos in accessing these screening services. While many Spanish‐speaking patients prefer language‐concordant GC, only 6% of US genetic counselors provide services in Spanish, and 60% use a bilingual medical interpreter. 33 , 34 , 35 Spanish‐preferring patients who receive GC in English or through interpreters have reported low hereditary breast and ovarian cancer knowledge, uncertainty about the purpose of testing, feeling overwhelmed, and inaccurate understanding of cancer risk and risk management options. 36 , 37 An analysis of the 2005 Health Information Trends Survey also found that individuals with immigrant status were less likely to report a family history of cancer, possibly resulting from fewer opportunities to learn about their family history due to separation from extended or immediate family members. 38 Providers may also forgo referring high‐risk Latinos to cancer‐related GC due to concerns about access, language, and cultural barriers, thus reducing opportunities for increasing awareness and knowledge about cancer risk and genetic screening among Latinos. 39 These barriers are partially associated with the community's level of acculturation—the degree to which the majority culture is adopted by a minority culture. 40 However, it is unclear to what extent existing strategies considered acculturation levels or made adaptations for the Latino community. While there is ample research that explores the individual‐level predictors (i.e., income, education level, etc.) for CGS attitudes and knowledge among minority groups, 41 , 42 , 43 it is unknown how many existing interventions have aimed to promote the uptake of CGS among Latinos. Understanding the characteristics of successful interventions geared toward Latino communities can facilitate the implementation of future interventions in broader settings and address persistent racial and ethnic inequities in CGS implementation, utilization, and access. 44
RE‐AIM (reach, efficacy/effectiveness, adoption, implementation, maintenance) is an implementation framework designed to guide the planning and evaluation of programs to support program implementation in realistic settings. 45 Application of the RE‐AIM framework could facilitate systematic evaluation of intervention strategies implemented, with a special focus on implementation strategy adaptations and components that support intervention sustainability and scalability. 46 This scoping review aimed to (1) describe interventions to promote uptake of cancer‐related genomic services among Latino populations in the US and Latin America, (2) describe the extent to which these interventions have adapted to increase their fit for Latino community needs, and (3) summarize the components suggested by RE‐AIM implementation framework that are associated with potential scalability of these strategies.
2. METHODS
2.1. Study design
A scoping review, informed by Arksey and O'Malley's scoping study framework, was performed as the research team anticipated a limited number of primary interventions reporting CGS interventions among Latino communities indicated by current racial/ethnic disparities in genetic databases. 47 A scoping review was conducted to map the existing body of evidence on interventions aimed to address this health disparity to highlight new ways of understanding it. 47 , 48 This paper utilizes the preferred reporting items for systematic reviews and meta‐analyses (PRISMA) guidelines for reporting on scoping reviews. 49 The PRISMA strategy is outlined in Figure 1. The current scoping review did not involve human subjects and therefore was exempt from the IRB approval process.
FIGURE 1.

PRISMA flow diagram.
2.2. Inclusion/exclusion criteria
The present analysis included interventional designs to promote the uptake of CGS that occurred within the US and/or Latin America after September 2005 to capture the clinical interventions that occurred after the USPSTF recommendation that women whose family history is associated with an increased risk for deleterious mutations in BRCA1 or BRCA2 genes be referred for GC and evaluation for BRCA testing. Papers were included if they described evidence‐based interventions aimed at increasing the utilization of cancer genomic services, were conducted in the U.S. or Latin America, and were human studies that included participants that are identified or self‐identified as Latino/Hispanic.
For the purposes of this study, cancer genomic services are defined as clinical services that include hereditary risk assessment of cancer, cancer genetic education or counseling, and cancer GT. 50 We defined ‘evidence‐based’ interventions as intervention strategies and methods informed by or derived from peer‐reviewed documented evidence (i.e., data‐based, research‐based, or scientifically‐based). Adaptations were defined as intentional modifications to achieve a better fit between an intervention and a new context, such as tailoring language, visuals, or literacy level. 51 , 52 We defined ‘intervention’ as a strategy or program to promote the uptake of cancer‐related genomic services. In this scoping review, Latino was defined as having origins or descent from Argentina, Bolivia, Brazil, Chile, Colombia, Costa Rica, Cuba, Dominican Republic, Ecuador, El Salvador, Guatemala, Honduras, Mexico, Nicaragua, Panama, Paraguay, Peru, Puerto Rico, Uruguay, or Venezuela. 1 While additional gender‐neutral terms, such as Latinx and Latine may also describe this community, Latino is often used as a gender‐neutral option and is widely accepted by the community. 53 For the purposes of this study, acculturation measures included language fluency, language preference, immigration status, nativity, country of origin, and time/number of generations living in the US. 54 Lastly, the intervention levels assessed were patient, provider, and organization (none of which were mutually exclusive).
Papers were excluded from the analysis if they were not written in English or Spanish, were not peer‐reviewed journal articles (including conference and meeting abstracts, commentaries, editorials, literature reviews, scoping reviews, and systematic reviews), performed tumor testing without direct patient involvement, conducted genetic screening/testing with the sole purpose of determining eligibility for a clinical trial, or did not provide full‐text access.
3. SEARCH STRATEGY AND STUDY SELECTION
Our search strategy (Appendix 1: Tables A1 and A2) was developed with the assistance of the library services of the Woodruff Health Sciences Center Library at Emory University. The PubMed search terms included free‐text and MESH terms for Latino (and terms that captured multiple nationalities and identities within the Latinx community), genetic screening, cancer, and cancer screening on PubMed.
Our search terms were then adapted for the Latin American and Caribbean Health Sciences Literature (LILACS) database by translating the English search terms to Spanish. Due to the limitations in the search function in the LILACS database, researchers chose the broadest search terms to produce results relevant to the scoping review (cáncer y genética/o [cancer and genetics] and tumor y genética/o [tumor and genetics]). The scoping review included interventions published in English or Spanish published within September 2005 to September 2022.
4. DATA EXTRACTION AND STUDY SELECTION
Titles and abstracts were double‐screened for inclusion by two of five reviewers (D.R., Y.G., D.M., J.R.R., or L.F.). Remaining studies were single‐screened at full‐text review by one of three reviewers (D.R., Y.G., or D.M.). Discrepancies were resolved through discussion.
The data extraction form was developed by the study team (D.R., Y.G.) and uploaded into the Covidence systematic review system. The research study characteristics extracted included authors, year of publication, country, study interventions to promote uptake of cancer‐related genomic services, intervention characteristics, study population, number of participants, and the main findings. The outcomes of interest included the uptake of genetic risk assessment (individuals who completed genetic risk screening/individuals who could have been screened), uptake of genetic education/counseling (individuals who completed GC services/individuals eligible for GC services), and uptake of GT (individuals who completed GT/individuals eligible for GT). 55 The acculturation measures identified in the previous section were also extracted. D.R., Y.G., and D.M. extracted qualitative and quantitative data based on the presence (1) or absence (0) of components for each RE‐AIM dimension (Table 3). Operationalization of each RE‐AIM dimension was informed by examples listed on the RE‐AIM website (https://re‐aim.org/learn/what‐is‐re‐aim/) and previous applications of the framework in health‐related systematic reviews. 55 , 56 , 57 Frequency counts and percentages were recorded for each RE‐AIM component, and means were calculated for each RE‐AIM indicator using Microsoft Excel 365.
TABLE 3.
Proportion of cancer‐related genetic service interventions among Latinos reporting RE‐AIM (n = 16 interventions).
| RE‐AIM Dimensions and Components | Proportion reporting |
|---|---|
| Reach | |
| Method to identify target population | 16 (100%) |
| Inclusion criteria | 15 (93.8%) |
| Exclusion criteria | 4 (25%) |
| Sample size | 16 (100%) |
| Participation rate | 10 (62.5%) |
| Characteristics of nonparticipants | 6 (37.5%) |
| Average of overall reach dimension | 69.8% |
| Efficacy/Effectiveness | |
| Uptake of genetic risk assessment | 10 (62.5%) |
| Uptake of genetic counseling and education | 11 (68.8%) |
| Uptake of genetic testing | 13 (81.3%) |
| Average of overall efficacy/effectiveness dimension | 70.9% |
| Adoption | |
| Description of intervention location | 16 (100%) |
| Description of staff who delivered intervention | 14 (87.5%) |
| Method to identify target delivery agent | 1 (6.3%) |
| Level of expertise of delivery agent | 14 (87.5%) |
| Adoption rate | 0 (0%) |
| Characteristics of cost implementation | 3 (18.6%) |
| Average of overall adoption rate | 48.0% |
| Implementation | |
| Intervention type and intensity | 16 (100%) |
| Extent protocol delivered as intended (%) | 6 (37.5%) |
| Measures of cost of implementation | 1 (6.3%) |
| Conducted training courses for intervention delivery agents | 7 (43.8%) |
| Piloted health education materials | 2 (12.5%) |
| Reported facilitators to implementation | 6 (37.5%) |
| Reported barriers to implementation | 11 (68.8%) |
| Adaptation made for intervention | 14 (87.5%) |
| Average of overall implementation dimension | 49.2% |
| Maintenance | |
| Assessed outcomes ≥6 months post‐intervention | 4 (25%) |
| Current status of program | 2 (12.5%) |
| Cost of maintenance | 0 (0%) |
| Average of overall maintenance dimension | 12.5% |
The study team (D.R., D.M., Y.G.) pilot tested the data extraction form with three studies and reached consensus among coders for each article. The lead author (DR) independently coded the rest of the eligible studies. The study team (D.R., D.M., Y.G.) met regularly to resolve any coding discrepancies and operationalize the RE‐AIM framework.
5. QUALITY ASSESSMENT
Rigor was assessed using the Effective Public Health Practice Project's Quality Assessment Tool for Quantitative Studies, chosen due to the tool's validity and reliability in assessing observational and experimental interventions. 58 , 59 Criteria assessed for study quality include study design, data collection methods, withdrawals, intervention integrity, and analyses.
6. RESULTS
6.1. Study characteristics
Of the 576 search results produced in the PubMed parent scoping review, only 16 met the inclusion criteria. Of the 3260 search results produced in LILACS, 1768 papers remained after duplicates were removed, and 0 met the inclusion criteria. Table 1 summarizes the descriptive characteristics of the included interventions (n = 16). Most interventions took place within the US (n = 13), 12 , 60 , 61 , 62 , 63 , 64 , 65 , 66 , 67 , 68 , 69 , 70 , 71 and the remaining interventions were conducted in Latin American countries, including Brazil (n = 2) 72 , 73 and Mexico (n = 1). 74 Of the 16 interventions included, 14 (87.5%) of the interventions were evidence‐based 12 , 60 , 62 , 63 , 64 , 65 , 66 , 67 , 68 , 69 , 71 , 72 , 73 , 74 and 2 (12.5%) interventions were not evidence‐based. 61 , 70 The most frequently hereditary cancer syndromes were hereditary breast and ovarian cancer (n = 14, 77.8%), 12 , 60 , 61 , 63 , 64 , 65 , 66 , 67 , 69 , 70 , 71 , 72 , 73 , 74 Lynch syndrome (n = 6, 37.5%) 61 , 64 , 68 , 70 , 72 , 73 and melanoma (n = 2, 12.5%). 62 , 64 Various studies reported a study sample that was predominately highly educated (n = 6, 37.5%), 60 , 62 , 63 , 64 , 67 , 70 had limited knowledge regarding genetic risk and testing (n = 4, 25.0%), 61 , 63 , 71 , 74 had completed mammogram screening (n = 3, 18.8%), 12 , 60 , 67 had a personal (n = 3, 18.8%) 12 , 71 , 74 or family history (n = 2, 12.5%) 65 , 72 of cancer, or lacked health insurance coverage (n = 2, 12.5%). 28 , 68 Five (31.3%) were cross‐sectional interventions, 12 , 60 , 61 , 72 , 73 4 (25.0%) interventions were randomized controlled trials, 62 , 63 , 66 , 71 3 (18.8%) were cohort studies, 65 , 68 , 69 2 (12.5%) were non‐randomized experimental interventions, 67 , 70 1 was a case–control study, 64 and 1 (6.3%) was a mixed‐methods study. 74 A detailed summary of each intervention and its characteristics can be found in Table 1.
TABLE 1.
Summary and characteristics of included studies.
| Study | Design description | Screened hereditary cancer syndromes | RE‐AIM dimensions | Quality assessment | ||||
|---|---|---|---|---|---|---|---|---|
| Reach | Effectiveness | Adoption | Implementation | Maintenance | ||||
| Abul‐Husn et al., 2021, USA 61 | Cross‐sectional study
|
HBOC, LS, familial hypercholesterolemia (FH), Hereditary transthyretin amyloidosis (hATTR) |
N = 74 Male: 13 (17.4%); Female: 61 (82.4%); Mean age: 58 years Age range: 28–83 years Latino: 31% |
|
Program was adopted by genetic counselors and Spanish translators at a university medical center. |
|
N/A | Weak |
| Anderson et al., 2015, USA 60 | Cross‐sectional study
|
HBOC |
N = 243 Age range: 25–69 years Female: 100% Latino: 26.2% |
|
Delivered by 2 research staff members in 2 federally qualified health centers. |
|
N/A |
Weak |
| Blazer et al., 2021, Mexico 74 | Mixed methods study
|
HBOC |
N = 1321 Male: 17 (1%); Female: 1304 (99%) Latino: 100% Varying healthcare coverages (private, no coverage, and national program coverage) |
|
Delivered in four clinic settings (1 university, 2 cancer centers, 1 hospital) by 11 staff members (6 geneticists, 2 oncologists, 1 gynecologist, 1 general physician, 1 genetic laboratory clinician). |
|
All physicians who received training continued to conduct GCRA. One site trained additional clinicians for more sustained services. Some clinicians left their institutions to implement GCRA services at other institutions. |
Weak |
| Campacci et al., 2017, Brazil 72 | Cross‐sectional study
|
HBOC, LS |
N = 20,000 Age range: 18–79 years Average age: 51 ± 9.45 years Female: 100% Latino: 100% |
|
Delivered by nurses with experience in cancer genetics in 12 mobile units across 381 cities and in a cancer hospital. |
|
N/A |
Weak |
| Conley et al., 2021, USA and Puerto Rico 71 | Randomized controlled trial
|
HBOC |
N = 52 Average age: 54 ± 9 years Female: 100% Latino: 100% Born in Puerto Rico: 56% Born in Columbia: 21% Born in Cuba: 17% |
|
Delivered by researchers and genetic counselors at a cancer center in the USA and a university research center in PR. |
|
N/A |
Moderate |
| Hay et al., 2018, USA 62 | Randomized controlled trial
|
MC1R (melanoma risk) |
N = 499 Age range: 19–85 years Mean age: 54 years Male: 103 (21%); Female: 376 (79%) Latino: 48.5% |
|
Delivered by bilingual project assistants at a university medical center. |
|
N/A |
Moderate |
| Kukafka et al., 2022, USA 63 | Randomized controlled trial
|
HBOC |
N = 187 Age range: 21–75 years Female: 100% Latino: 46.6% Can consent in English or Spanish |
|
Delivered at an academic medical center by research team and included 67 clinicians. |
|
N/A |
Moderate |
| Lee et al., 2005, USA 64 | Case–control study | HBOC, LS, melanoma |
N = 7316 Female: 100% Non‐English speaking: 25% Latino: 26% |
|
Delivered by a genetic counselor, a part‐time physician, and a clerk at a public health hospital. |
|
N/A |
Weak |
| McGuinness et al., 2019, USA 12 | Cross‐sectional study
|
HBOC |
N = 3055 Age range: 29–91 years Mean age: 58 years Female: 100% Latino: 76.7% |
|
Delivered by research team at an academic medical center. |
|
N/A |
Weak |
| Mette et al., 2016, USA 70 | Non‐randomized experimental study
|
HBOC, LS |
N = 353 Age ≥ 50 years: 58% Latino: 56.6% English‐preferring: 84% |
|
Delivered in four clinic settings by healthcare providers, genetic counselors, and oncologists. |
|
N/A | Weak |
| Nogueira et al., 2021, Brazil 73 | Cross‐sectional study
|
HBOC, LS |
N = 675 Latino: 100% |
|
Delivered by a psychologist, lab technician, administrative staff, oncogeneticist, and general geneticist in a clinic setting. |
|
Discussed 3 potential strategies to improve sustainability of the program. | Weak |
| Pasick et al., 2016, USA 66 | Randomized controlled trial
|
HBOC |
N = 88 Age range: 28–69 years Female: 100% Latino: 36.3% Foreign‐born: 25.0% |
|
Delivered by telephone information specialists. Individuals were referred to genetic counselors (GC). |
|
Mention of collaboration with Cancer Risk Program to screen women but status of funding for GC referrals after the study is unclear. | Moderate |
| Schonberg et al., 2020, USA 67 | Non‐randomized experimental study
|
HBOC |
N = 337 Age range: 40–49 years Female: 100% Mean age: 44.1 ± 2.9 Latino: 9.2% |
|
Delivered by Primary Care Clinician (PCC) at a university PCP. |
|
N/A | Moderate |
| Snedden et al., 2020, USA 68 | Cohort study
|
LS |
N = 381 PRE (N) = 272 PERI (N) = 25 POST(N) = 84 Male: 230 (60.4%), Female: 151 (39.6%) Latino: 62.5% |
|
Delivered by gastroenterologists, medical oncologists, surgeons, and pathologists in a clinical setting. The pathologists were responsible for verbally requesting and confirming the order for testing. |
|
N/A |
Weak |
| Soewito et al., 2022, USA 65 | Retrospective cohort study
|
HBOC |
N = 1595 Age range: 18+ years Male: 224 (14%), Female: 1371 (86%) Latino: 80% Low SES, literacy, and educational attainment levels |
|
Program delivered by Community Health Workers at the home clinic, locally on periodic outreach trips (occurring in 8‐week intervals), or through video‐teleconferencing. |
|
N/A | Weak |
| Walker et al., 2021, USA 69 | Historical control study
|
HBOC, pancreatic ductal adenocarcinoma (PDAC) |
N = 223 Mean age: 64.6 ± 12 years Male: 116 (52%), Female: 107 (48%) Latino: 5% Spanish‐preferring: 7 (3%) |
|
Intervention occurred at 1 oncology clinic. Program delivered by Nurse Navigators (NN), New Patient Coordinators (NPC), Genetic Counseling Assistants (GCA), and Genetic Counselors (GC). |
|
N/A |
Weak |
Abbreviations: FH, family history; GC, genetic counseling; GRA, genetic risk assessment; GT, genetic testing; HBOC, hereditary breast and ovarian cancer; LS, lynch syndrome; PCP, primary care provider.
6.2. Characteristics of the intervention
Most interventions occurred at the patient‐level (n = 12, 75.0%), 12 , 61 , 62 , 63 , 64 , 65 , 66 , 69 , 70 , 71 , 72 , 74 followed by the organizational level (n = 6, 37.5%), 60 , 64 , 66 , 68 , 69 , 74 and the provider‐level (n = 4, 25.0%). 60 , 65 , 68 , 74 Seven interventions addressed multiple levels. 60 , 64 , 65 , 66 , 68 , 69 , 74 Of these interventions, 13 (81.25%) piloted the use of cancer risk assessment tools (electronic, printed, or administered via phone call), 12 , 60 , 61 , 64 , 65 , 66 , 67 , 68 , 69 , 70 , 71 , 72 , 74 12 (75.0%) provided educational materials on GC/GT, cancer, and genetic risk among providers and/or patients (outreach events, brochures, and in‐service trainings), 60 , 62 , 63 , 64 , 65 , 66 , 68 , 69 , 70 , 71 , 72 , 74 and 3 (18.75%) provided printed individualized cancer risk results to patients. 60 , 61 , 67
6.3. Strategies to address acculturation
Most interventions considered acculturation issues to some extent during their design and implementation phases (n = 11, 68.8%). 61 , 62 , 63 , 64 , 65 , 66 , 69 , 70 , 71 , 73 , 74 As seen in Figure 2, common strategies to address acculturation include use of translation services (n = 10, 62.5%), 61 , 62 , 63 , 64 , 65 , 66 , 70 , 71 , 73 , 74 measuring language preference (n = 7, 43.8%) 61 , 63 , 65 , 69 , 70 , 71 , 74 or fluency (n = 3, 18.8%), 62 , 66 , 74 and documenting nativity (n = 2, 12.5%) 62 , 71 and country of origin (n = 1, 6.3%). 74
FIGURE 2.

Number of interventions reporting acculturation measures (n = 16).
6.4. RE‐AIM dimensions
Table 3 summarizes the number and percentage of interventions reporting each RE‐AIM dimension and component. The most reported dimensions of the implementation framework were reach (69.8%) and efficacy (70.9%). The least reported dimension of the framework was maintenance (10.4%).
6.5. Reach
Baseline sample sizes ranged from 52 to 20,000 (median = 359) participants. All interventions reported the proportion of Latino/a participants (range = 5%–100%). Most interventions reported characteristics such as sex (n = 15, 93.8%) 12 , 60 , 61 , 62 , 63 , 64 , 65 , 66 , 67 , 68 , 69 , 71 , 72 , 74 and age range (n = 10, 62.5%). 12 , 60 , 61 , 62 , 63 , 65 , 66 , 67 , 69 , 72 Some reported characteristics such as language literacy and language preference. Eight (50.0%) interventions only targeted female patients and screened for hereditary breast and ovarian cancer syndrome. 12 , 60 , 63 , 64 , 66 , 67 , 71 , 72
All interventions reported their methods for identifying the target population for the intervention and sample size (n = 16, 100%), and most interventions outlined their inclusion criteria (n = 15, 93.8%) 12 , 60 , 61 , 62 , 63 , 64 , 65 , 66 , 67 , 68 , 69 , 70 , 71 , 72 , 74 and participation rate (n = 10, 62.5%). 12 , 60 , 61 , 62 , 63 , 66 , 67 , 69 , 70 , 74 Patients were recruited through an electronic health record 61 , 68 , 73 or registry, 68 , 71 recruiting in clinic settings 12 , 60 , 62 , 63 , 64 , 65 , 69 , 71 , 72 , 74 or outreach events, 71 by patient referral, 70 , 73 by mail, 67 or through a call center. 66 Few interventions, however, outlined their exclusion criteria (n = 4, 25.0%) 62 , 67 , 68 , 69 or the characteristics of individuals who refused to participate (n = 6, 37.5%). 60 , 62 , 63 , 66 , 68 , 69 The reach dimension had an overall reporting proportion of 69.8%.
6.6. Efficacy/effectiveness
Of the 16 interventions included, the uptake rate of genetic risk assessment screening was available for 10 (62.5%) interventions (uptake rate range: 19%–100%). 12 , 60 , 63 , 66 , 67 , 68 , 69 , 70 , 71 , 72 Three additional studies completed genetic risk screening but did not provide information on how many participants could have been screened. 64 , 73 , 74
Eleven interventions (68.8%) reported the uptake rate of GC/education (range: 6%–95%). 61 , 62 , 63 , 64 , 65 , 66 , 67 , 68 , 69 , 70 , 71 Four additional interventions reported how many patients were eligible for GC/education; however, they did not report how many participants completed GC. 60 , 72 , 73 , 74
Thirteen interventions (81.3%) reported the uptake rate of GT (uptake rate range: 4.6%–100%). 12 , 61 , 62 , 63 , 64 , 65 , 66 , 68 , 69 , 70 , 71 , 73 , 74 Three interventions did not measure GT uptake as an intervention outcome. 60 , 67 , 72 Overall, 70.9% of the efficacy/effectiveness domain was reported by the interventions included in the review. Assessing the uptake of CGS among Latinos is challenging as only five studies reported uptake of genetic risk assessment among Latinos. 12 , 60 , 71 , 72 , 74 Two studies reported uptake of GC among Latinos, 62 , 71 and four reported uptake of GT among Latinos. 62 , 71 , 73 , 74
6.7. Adoption
All interventions (n = 16, 100.0%) provided a description of the intervention location. Most interventions (n = 11, 68.8%) occurred in one site location 12 , 60 , 61 , 62 , 63 , 64 , 65 , 67 , 69 , 70 , 72 and 5 (31.3%) occurred across multiple site locations. 66 , 68 , 71 , 73 , 74 Intervention settings included universities (n = 12, 75.0%), 12 , 61 , 62 , 63 , 65 , 66 , 67 , 68 , 69 , 70 , 71 , 74 oncology hospitals (n = 3, 18.8%), 72 , 73 , 74 cancer centers (n = 2, 12.5%), 71 , 74 primary care clinics (n = 2, 12.5%), 60 , 73 a national research center (n = 1, 6.3%), 74 a general hospital (n = 1, 6.3%), 64 and a state department of health (n = 1, 6.3%). 66 Fourteen interventions (87.5%) described the staff who delivered the intervention and their level of expertise. 60 , 61 , 62 , 64 , 65 , 66 , 67 , 68 , 69 , 70 , 71 , 72 , 73 , 74 Delivery agents include PCPs, GCs, nurses, community health workers, and research assistants with multiple years of experience. Of these 14 interventions, only 1 reported their method to identify the intervention delivery agent. 74 Three interventions (18.8%) reported the cost characteristics of the intervention implementation, such as the materials needed to complete GT, the cost of genetic tests, and printed educational materials. 71 , 73 , 74 None of the interventions included in the review reported the adoption rate of the intervention. Overall, the interventions included reported 48.0% of the components in the adoption dimension.
6.8. Implementation
All interventions (n = 16, 100%) reported the intervention type and intensity of the intervention. Seven interventions (43.8%) conducted training for the personnel delivering the intervention 60 , 63 , 67 , 68 , 70 , 72 , 73 and 2 (12.5%) interventions piloted health education materials prior to the start of the intervention. 71 , 74 Eleven interventions (68.8%) reported barriers to implementation, 12 , 61 , 62 , 64 , 65 , 68 , 69 , 70 , 71 , 73 , 74 the most common being lack of adequately trained workforce, financial barriers to GC/GT, lack of GT/GC knowledge among patients, limited family history knowledge, and language barriers. Only 6 (37.5%) interventions reported facilitators to implementation, 65 , 66 , 69 , 70 , 71 , 74 including reducing health literacy required to comprehend GT/GC educational materials and scheduling GT/GC appointments earlier in the intervention process. Most interventions (n = 7, 43.8%) delivered the intervention within the current workflow of the organization. 12 , 64 , 66 , 68 , 69 , 70 , 72 Six interventions (37.5%) reported the extent to which the protocol was delivered as intended 62 , 66 , 67 , 68 , 69 , 71 and 1 (6.3%) intervention reported the cost of implementation. 74 Most interventions (n = 14, 87.5%) made adaptations to the intervention. 12 , 60 , 61 , 62 , 63 , 64 , 65 , 66 , 68 , 69 , 70 , 71 , 72 , 74 Of these interventions, adaptions in 7(43.8%) addressed only one level of implementation, 12 , 61 , 62 , 63 , 70 , 71 , 72 6 (37.5%) addressed two levels, 60 , 64 , 65 , 66 , 68 , 69 and 1 (6.3%) addressed three levels (levels assessed: patient, provider, organization). 74 Most adaptations made were related to various measures of acculturation. Other adaptations included designing intervention materials that mirror current workflow of intervention setting (n = 4, 25.0%), 60 , 66 , 69 , 74 reducing required literacy of health education materials (n = 4, 25.0%), 66 , 70 , 71 , 74 incorporating changes to health education materials after piloting (n = 3, 18.8%), 64 , 70 , 71 and providing no‐/low‐cost GC/GT (n = 2, 12.5%). 69 , 71 Overall, the interventions reported an average of 49.2% components of the implementation dimension.
6.9. Maintenance
Of the 16 interventions, only 3 (18.8%) assessed intervention outcomes 6 months after the implementation 63 , 64 , 67 , 74 and 2 (12.5%) interventions reported the current status of the intervention. 73 , 74 One intervention reported an expansion of the program to other site locations and among other clinical practitioners. 74 Another intervention is exploring strategies to improve the sustainability of the program. 73 No intervention reported the cost associated with the maintenance of the program. Overall, the interventions reported an average of 12.5% of the components of the maintenance dimension.
6.10. Quality assessment
Based on the quality assessment tool criteria, 11 interventions (68.7%) were of weak quality, 12 , 60 , 61 , 64 , 65 , 68 , 69 , 70 , 72 , 73 , 74 5 interventions (32.3%) were of moderate quality, 62 , 63 , 66 , 67 , 71 and none of the included interventions were of strong quality (Table 2). The moderate‐quality interventions utilized a RCT and a pre‐/post‐cohort study design.
TABLE 2.
Descriptive characteristics of interventions.
| Studies (n = 16) | |
|---|---|
| Country | |
| USA | 13 (81.3%) |
| Brazil | 2 (12.5%) |
| Mexico | 1 (6.3%) |
| Study design | |
| Cross‐sectional study | 5 (31.3%) |
| Mixed methods | 1 (6.3%) |
| Randomized controlled trial | 4 (25.0%) |
| Case–control study | 1 (6.3%) |
| Non‐randomized experimental study | 2 (12.5%) |
| Cohort study | 3 (18.8%) |
| Quality rating | |
| Strong | 0 |
| Moderate | 5 (32.3%) |
| Weak | 11 (68.7%) |
| Intervention setting | |
| Academic institution | 12 (75.0%) |
| Cancer center | 2 (12.5%) |
| Oncology hospital | 3 (18.8%) |
| Primary care clinic | 2 (12.5%) |
| National research center | 1 (6.3%) |
| General hospital | 1 (6.3%) |
| State department of health | 1 (6.3%) |
| Intervention level | |
| Patient‐level | 12 (75.0%) |
| Provider‐level | 4 (25.0%) |
| Organization‐level | 6 (37.5%) |
| Number of levels addressed in study | |
| 1 | 7 (43.8%) |
| 2 | 6 (37.5%) |
| 3 | 1 (6.3%) |
| Evidence‐based design | |
| Yes | 13 (81.3%) |
| No | 2 (12.5%) |
7. DISCUSSION
Few published interventions promoting the uptake of GC/GT services among Latino populations in the U.S. have been reported, and fewer in Latin America. CGS are rare in many Latin American countries, possibly because genetic counseling is not a formally recognized discipline in these countries, limited CGS expertise among healthcare professions, few genetic counseling training programs, and lack of CGS services among socioeconomically disadvantaged populations. 73 , 74 , 75 , 76 Of 2344 publications, 16 interventions (0.68%) conducted among Latino communities were published. Of these interventions, none were uniquely identified through LILACS or published in Spanish, highlighting the lack of CGS uptake research in Latin America.
The most common intervention delivery method was incorporating an existing or modified family history‐based screening tool within the current clinic setting workflow. While most interventions addressed multiple levels, they primarily focused on the patient level (75%). Comparatively, a recent systematic review conducted across the U.S. population found that only 17 of 44 (39%) interventions designed to promote the uptake of CGS focused solely on the patient level. 77 The results of this review may be inconsistent with interventions conducted among the overall US population due to the prominence of acculturation‐informed intervention design in our review. To increase the fit of the intervention for Latino patients, 11 interventions included acculturation measures and adaptations to address language barriers in clinic settings and demonstrated higher uptake of CGS. These findings suggest that patient‐level implementation and adaptation may be uniquely necessary for communities that experience language barriers in health care settings. Future interventions may explore the role of acculturation measures at provider/organizational levels such as assessing the impact of cultural humility trainings on healthcare providers' cross‐cultural interactions, examining the availability and quality of translation services within healthcare organizations to assess communication and comprehension gaps, and implementing strategies to engage patients from diverse backgrounds in CGS uptake.
Commonly applied acculturation‐informed strategies included use of translation services, measuring language preference and fluency, and documenting nativity and country of origin. However, important acculturation measures, such as immigration status and time/generations in the US, went unreported. These findings were consistent with prior literature in healthcare settings. 54 While considering language barriers is necessary to address gaps in uptake among the Latino community, it may also be valuable to consider less‐reported factors. For example, time/generations in the US and immigration status may provide important context for providers regarding patient knowledge of GC/GT and incomplete patient family history. 38 In this review, interventions 12 , 67 , 68 that did not implement adaptations to address varying levels of acculturation generally reported lower rates of uptake of CGS compared with the interventions 61 , 65 , 66 , 70 , 71 , 74 that implemented acculturation‐informed adaptations. Studies that did not report any language‐based adaptations 60 , 67 , 69 had much lower recruitment of Latinos in the study sample compared with interventions that did incorporate these adaptations. Inclusion of additional acculturation measures can inform the design of culturally relevant health education programs and interventions that account for the heterogeneity of the Latino population.
Adapting established screening methods to current patient intake processes facilitated implementation and promoted adoption of screening tools among staff, regardless of educational background or expertise. There is promising evidence that implementing existing screening tools into current organizational workflows can promote the delivery and uptake of CGS. However, most interventions lacked maintenance details of the intervention, making the status of the program unclear. Additionally, there was a lack of reporting of intervention implementation factors that were associated with program scalability and sustainability. Future interventions may benefit from the application of an implementation framework, such as RE‐AIM, to ensure factors of scalability and sustainability are measured and reported. The use of implementation frameworks in intervention design can further our ability to reproduce interventions outside of academic institutions and reduce access to care barriers, which is essential to address the paucity of interventions aimed at the Latino community despite the broad and inclusive search conducted for the present scoping review.
Regarding increasing access among Latino communities, the interventions showed varying success. Of the interventions included, 5 (31.25%) interventions had a sample that was 100% Latino, and 2 (12.5%) interventions included samples that were less than 25% Latino. Most interventions (n = 8, 50%) included exclusively female study populations. Interventions that addressed access barriers highlighted by Latino communities, such as cost, high participant burden, timeliness of care, and language barriers, showed high reach potential for CGS uptake. Existing research also highlights the importance of cultural factors, such as religion, in the formation of genetic fatalism beliefs. 78 Although the research base is limited, current literature suggest that creating culturally curated intervention strategies can facilitate the uptake of CGS among Latino communities by addressing perceived concerns and negative emotional effects. 78 Future research may focus on intentionally recruiting from Latino communities and measuring CGS uptake among men to improve intervention methods that benefit the community at large. Implementing the use of community‐based participatory research and transdisciplinary methods can further develop our knowledge base on addressing existing inequities in CGS by emphasizing mutual learning and minimizing bias. 79 , 80
Our review has some limitations. Our analysis included all relevant interventions that reported inclusion of Latino participants, regardless of the proportion. As such, the findings of some interventions may not be applicable to Latino populations if the community was underrepresented in the study population. Additionally, many studies did not report characteristics that highlight the diversity of Latino study participants, thus limiting our ability to analyze uptake rates across ethnicities, language preference groups, or immigration statuses. Research focused on understanding or addressing racial/ethnic disparities in CGS should consider reporting uptake by such characteristics to identify hidden trends in large racial/ethnic groups. Despite these limitations, our review included literature searches in both English‐ and Spanish‐language databases to characterize interventions designed to promote the uptake of CGS among Latino communities in the US and Latin America. Acculturation‐informed adaptations may improve the fit of future interventions with the Latino community and promote the uptake of CGS services. The lack of consensus on the role acculturation plays on the health experiences of Latinos highlights the need for further explore acculturation‐informed intervention design and implementation to better understand how to operationalize acculturation and analyze its impact on health outcomes. Usage of the RE‐AIM framework showed that various measures of implementation are underreported, thus limiting application in other settings and scalability. Designing future interventions using implementation frameworks may improve intervention scalability of successful strategies and increase utilization of CGS services among Latino communities.
AUTHOR CONTRIBUTIONS
Dayanna Ramirez Leon: Conceptualization (lead); data curation (equal); formal analysis (lead); investigation (equal); methodology (equal); software (equal); visualization (lead); writing – original draft (lead); writing – review and editing (equal). Denise Martinez: Formal analysis (equal); validation (equal); writing – review and editing (equal). Jessica Rivera Rivera: Formal analysis (equal); validation (equal); writing – review and editing (equal). Lindsay Fuzzell: Formal analysis (equal); resources (equal); validation (equal); writing – review and editing (equal). Susan Vadaparampil: Methodology (supporting); resources (equal); writing – review and editing (equal). Hannah Rogers: Data curation (lead); resources (lead); software (equal); writing – review and editing (equal). Sheryl Gabram: Conceptualization (supporting); supervision (supporting); writing – review and editing (equal). Cindy Snyder: Conceptualization (supporting); supervision (supporting); writing – review and editing (equal). Yue Guan: Conceptualization (equal); formal analysis (equal); funding acquisition (lead); methodology (equal); project administration (equal); supervision (equal); validation (equal); writing – review and editing (equal).
FUNDING INFORMATION
PI (Guan) received a research grant from the Emory University Rollins School of Public Health Dean's Pilot and Innovation 2022 Grant to pay authors (Dayanna Ramírez and Denise Martinez) for the time spent preparing the manuscript.
CONFLICT OF INTEREST STATEMENT
No authors have conflict or interests to report.
APPENDIX 1. SEARCH STRATEGY
TABLE A1.
Search terms for PubMed.
| Concept | Specific search terms |
|---|---|
| Latine | (hispanic*[tiab] OR “hispanic american*”[tiab] OR “hispano*”[tiab] OR “latine*”[tiab] OR “latina*”[tiab] OR “latin”[tiab] OR “latinu*”[tiab] OR “latino”[tiab] OR “latinx*”[tiab] OR “latin american*”[tiab] OR “latin america”[Mesh] OR “spanish speak*”[tiab] OR “mexico*”[tiab] OR “Mexico”[Mesh] OR “cuban*”[tiab] OR “peruvian*”[tiab] OR “dominican*”[tiab] OR “brazilian*”[tiab] OR “central american*”[tiab] OR “costa rican*”[tiab] OR “guatemalan*”[tiab] OR “honduran*”[tiab] OR “uruguayan*”[tiab] OR “argentina”[Mesh] OR “argentine”[tiab] OR “argentinian”[tiab] OR “argentinean”[tiab] OR “panamanian*”[tiab] OR “salvadorean*”[tiab] OR “salvadoran*”[tiab] OR “salvadorian*”[tiab] OR “nicaraguan*”[tiab] OR “south america*”[tiab] OR “bolivian*”[tiab] OR “chilean*”[tiab] OR “Chile”[Mesh] OR “colombian*”[tiab] OR “ecuadorian*”[tiab] OR “paraguay*”[tiab] OR “Paraguay”[Mesh] OR “venezuelan*”[tiab] OR “puerto rican*”[tiab] OR “puerto rico*”[tiab] OR “Puerto Rico”[Mesh] OR “spanish america*”[tiab] OR “boricua*”[tiab] OR “chicana*”[tiab] OR “chicano”[tiab] OR “Hispanic or Latino”[Mesh] OR “latinoamerican*”[tiab] OR “Mexican Americans”[Mesh] OR “spanish caribbean*”[tiab] OR “mexican american*”[tiab]) |
| AND | |
| Cancer | (“Neoplasms”[Mesh] or neoplasm*[tw] or cancer*[tw] or tumor*[tw] or tumor*[tw] or malignan*[tw]) |
| AND | |
| Genetic screening | ((genetic[tw] or genetics[tw]) and (screening*[tw] or “Mass Screening”[Mesh])) OR “Genetic Testing”[Mesh] OR “Genetic Carrier Screening”[Mesh] |
| AND | |
| Publication date | (2005/1/1:2022/8/10[pdat]) |
TABLE A2.
Search terms for Latin American and Caribbean Health Sciences Literature (LILACS).
| Concept | Specific search terms |
|---|---|
| Cancer | cáncer o tumor |
| AND | |
| Genetics | genética/o |
Ramirez Leon D, Martinez D, Rivera Rivera J, et al. Assessing interventions promoting the uptake of cancer‐related genomic services within the Latino community: A scoping review using the RE‐AIM framework. Cancer Med. 2024;13:e7440. doi: 10.1002/cam4.7440
DATA AVAILABILITY STATEMENT
All data and materials are available upon request (Dayanna Ramirez, dayanna.ramirez@emory.edu).
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Data Availability Statement
All data and materials are available upon request (Dayanna Ramirez, dayanna.ramirez@emory.edu).
