Latinx attitudes, barriers, and experiences with genetic counseling and testing: A systematic review

Dron, Heather A; Bucio, Daiana; Young, Jennifer L.; Tabor, Holly K.; Cho, Mildred K.

doi:10.1002/jgc4.1632

Cited by 8 publications

(2 citation statements)

References 150 publications

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“…A key finding was that GUÍA was most helpful in increasing understanding outcomes for the H/L population in our study. These results suggest that GUÍA may be a useful and beneficial tool for counseling individuals of H/L descent, who currently represent almost 19% of the US population(33) yet for whom research has demonstrated significant unmet needs in genomic medicine (34). Interestingly, GUÍA's effectiveness in the H/L population was attenuated when a medical interpreter was used for result disclosure.…”

Section: Discussionmentioning

confidence: 96%

The NYCKidSeq randomized controlled trial: Impact of GUÍA digitally enhanced genetic counseling in racially and ethnically diverse families

Suckiel,

Kelly,

Odgis

et al. 2023

Preprint

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Background: Digital solutions are needed to support rapid increases in the application of genetic and genomic tests (GT) in diverse clinical settings and patient populations. We developed GUÍA, a bi-lingual web-based platform that facilitates disclosure of GT results. The NYCKidSeq randomized controlled trial evaluated GUÍA's impact on understanding of GT results. Methods: NYCKidSeq enrolled diverse children with neurologic, cardiac, and immunologic conditions who underwent GT. Families were randomized to genetic counseling with GUÍA (intervention) or standard of care (SOC) genetic counseling for results disclosure. Parents/legal guardians (participants) completed surveys at baseline, post-results disclosure, and 6-months later. Survey measures assessed the primary study outcomes of perceived understanding of and confidence in explaining their child's GT results and the secondary outcome of objective understanding. We used regression models to evaluate the association between the intervention and the study outcomes. Results: The analysis included 551 participants, 270 in the GUÍA arm and 281 in SOC. Participants' mean age was 41.1 years and 88.6% were mothers. Most participants were Hispanic/Latino(a) (46.3%), White/European American (24.5%), or Black/African American (15.8%). Participants in the GUÍA arm had significantly higher perceived understanding post-results (OR=2.8, CI[1.004,7.617], P=0.049) and maintained higher objective understanding over time (OR=1.1, CI[1.004, 1.127], P=0.038) compared to those in the SOC arm. There was no impact on perceived confidence. Hispanic/Latino(a) individuals in the GUÍA arm maintained higher perceived understanding (OR=3.9, CI[1.6, 9.3], P=0.003), confidence (OR=2.7, CI[1.021, 7.277], P=0.046), and objective understanding (OR=1.1, CI[1.009, 1.212], P=0.032) compared to SOC . Conclusions: This trial demonstrates that GUÍA positively impacts understanding of GT results in diverse parents of children with suspected genetic conditions. These findings build a case for utilizing GUÍA to deliver complex and often ambiguous genetic results. Continued development and evaluation of digital applications in diverse populations are critical for equitably scaling GT offerings in specialty clinics. Trial Registration: Clinicaltrials.gov identifierNCT03738098

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Section: Discussionmentioning

confidence: 96%

The NYCKidSeq randomized controlled trial: Impact of GUÍA digitally enhanced genetic counseling in racially and ethnically diverse families

Suckiel,

Kelly,

Odgis

et al. 2023

Preprint

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“…Prior studies report low awareness and uptake of genetic testing services for inherited cancers among the Hispanic/Latino (H/L) populations in the United States [ 2 ], who comprise more than 18% of the population and represent the largest minority group. Despite the low awareness, studies suggest once aware, H/L individuals are interested in learning more about inherited cancer and testing [ 3 ]. However, access to these services by Spanish speakers is limited due to a multitude of barriers including a dearth of Spanish-speaking genetic counselors [ 4 ].…”

Section: Introductionmentioning

confidence: 99%

Piloting a Spanish-Language Web-Based Tool for Hereditary Cancer Genetic Testing

Cragun,

Manso,

Arcusa

et al. 2023

Current Oncology

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The delivery of hereditary cancer pre-test education among Spanish-language patients is impeded by the dearth of Spanish-speaking genetic counselors. To address this gap, we evaluated a web-based genetic education tool delivered in Spanish to provide information typically discussed during an initial genetic counseling session. Spanish-speaking patients with a personal or family history of cancer were recruited at two centers in Puerto Rico and through social media. A total of 41 participants completed a survey before and after viewing the tool to measure knowledge, attitudes, and decisional empowerment. A subset of 10 participants completed a virtual semi-structured interview to assess the usability and appropriateness of the tool. Paired t-tests were calculated to evaluate changes in knowledge and attitudes. A McNemar test assessed for decisional empowerment. Interview transcripts were translated from Spanish to English and inductively coded and analyzed. Results revealed significant increases in knowledge (p < 0.001), while attitudes about genetic testing did not change (p = 0.77). The proportion of individuals who felt fully informed and empowered to decide about whether to undergo genetic testing increased from 15% to 51% (p < 0.001). Qualitative data indicated that participants found the tool easy to use with informative and valuable content. Our findings suggest this Spanish-language tool is a user-friendly and scalable solution to help inform and empower many individuals to decide about cancer genetic testing, recognizing that others may still benefit from genetic counseling prior to testing.

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